Jim's Long-Winded & Overly Wordy Blog

The Thoughts and Wild Ranting of a Home HemoDialysis Patient

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December 31, 2006
Today is the last day of the year. Tomorrow things start anew according to our society. Most people will be making resolutions for the new year. In my case I will be starting my new dialysis process back in-center and no longer doing home dialysis.

In many ways I am pleased and in others I am disappointed. The home dialysis program at my clinic is not very good. There have been many concerns and issues that they seem to not care about at all. I am hoping that returning to the center will relieve stress here at home and maybe improve my health. I think I am allergic to the filter or the dialysate or something about the NxStage machine and it's process. We shall see.

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December 23, 2006
Sandy and Amanda are cooking up a storm today. They love to take advantage of holidays to make all manner of cakes, cookies and whatnot which they give to the neighbors. They seem to have a grand time with it although I think it looks like a great deal of sweaty work. Hey.. I am sure they do not understand my enjoyment of computer programming either. To each their own. On the bright side it is a nice reward for the neighbors who have been really helpful this year with the yardwork. In my state I could never have managed.

At the first of the year I will be returning to in-center dialysis. The pressure and demands of doing dialysis 6 days a week on the NxStage unit here at home is just too much. It leaves no time for anything else in the evenings. It is also a massive stress on Sandy and Amanda. Mostly on Sandy. She works all day and then comes home only to have to spend 4 hours tending to me and making sure nothing goes wrong with my dialysis. That is a lot to ask of a person with no money in return. She has a 25 hour a week job with nothing in return.

By going back in clinic I can take the stress and load off both of them and let them have some time to live their lives as they desire. This is very importnant to me. I am an Objectivist not an Altruist. People sacrificing their time and life for me is not how I live. At least the nurses at the clinic get paid for the service they perform. And that is a much better situation I think. I am quite disturbed that the clinic thinks it is okay to charge for my sessions but Sandy gets nothing for her work. Must be nice to have unpaid workers.

Dialysis has been no fun at all. I did not expect that it would be, but I never dreamed there would be so many people playing games with it all. I should have expected it I suppose. Our society has much to learn and far to go. I am just disappointed that we care more for unearned money and resources than for other humans. And please let me add in to that grouping the unreal amounts of bureaucracy in our society. So many rules and regulations that only add pain and anguish to the world. I won't bore you with examples... I am sure you can think of your own.

So back to clinic I go. On the bright side: I will have a lot less to hassle with overall. And I am even hoping that some of my issues may be a side effect of the NxStage dialysate solution. If that is the case then in time I will feel better even with less cleaning. I have often wondered about this possibility but never had a way to test it. I would really like to feel better. I have spent too many days already feeling rather ill. It would be quite an irony if the NxStage was the cause of my ill feelings over the last few months. We shall see.

So I guess I have only a few more sessions here at home and then on January 2nd, 2007 I shall start the new year in the clinic. What the future will bring I cannot say, but I shall approach it with a sense of excitement and see.

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December 21st, 2006
Hard to imagine it is just days until Christmas. I do not celebrate the holiday myself since I am an atheist, but the world shuts down so it is a day one has to acknowledge if only to take the day off. I will probably do just that and enjoy the time off. Since it is a Monday this year I will spend some of the day on the dialysis machine. Holidays mean nothing to my body.

Today was another monthly visit to the dialysis clinic. Things went well enough although the staff there seemed far more interested in holiday festivities than medical care. It is always something with those people. Personally I think they hate their jobs and lives as much as all the rest of the people around here. All I know is that they take an awful lot of time to take my blood and pat me on the head. On the bright side: I got a gift from the clinic. A small nylon tote bag. Last year was a blanket. Say it with me... What a joke! At least this year I was not trapped in a chair on the floor when the fake Santa comes around and hands the gift out to the patients. Geez, I hated that foolishness.

I still fail to grasp how the Judeo-Christian religion could be so powerful for almost 2000 years and yet be so infantile in it's needs and wants and rituals. And they call me a heathen? Please. The whole lot of them needs to grow up and start acting like thinking adults. Instead we get all this infantile foolishness several times a year. So tiresome.

Hopefully my recent issues with internal bleeding and gall bladder complications will not kill me just yet. I have a couple more doctor's appointments this month and if I am lucky I will still be alive to greet the new year. I must admit to a certain anger regarding all my health care. So often my medical team tries to convince me that if I just hang on and keep struggling that some day I will return to my previous state of life. It has become quite clear to me that this is a rather large fabrication. My life is never going to be the same again, but if they can convince me that it will then I continue to be the "cash cow" to them that I am now. Clearly it is all about me being "of value" to the medical community.

I never expected to have my old life back again and I don't beleive people when they assure me that someday it will be so. I fully understand that in most cases this fantasy is for them and not me. They need to beleive that life is good and always comes out okay if you just struggle hard enough and more importantly... want it badly enough. Clearly I see the world differently because I believe in reality as a base instead of "what I think is what happens". In many ways it all comes down to a basic fear.

I understand this because I too share this fear. In my case I feel it and see it better than most people. I know what it is to be on the edge of death. To know that tomorrow will never come and that all of your ideas, projects, and dreams are done. Never to be completed by you. Perhaps to be lost forever to the empty void we call death. That is a hard thing to swallow. It is terrifying as it happens... as you lose control and all that you are ceases to be.

I have wondered many times how average people can simply waste away the days of their lives in so many futile pursuits. If death teaches any leasson it must be the concept that life is special and can be swept away so fast. I think it also teaches that each life is valuable and each moment must be cherished.

Our ancestors knew this better than we do I think. In times gone by our species faced many dangers and many predators that desired to end our lives to feed theirs. In modern times we have changed that equation but there are still dangers a plenty. A human life can be terminated with startling speed. That being the case we should honor life and celebrate each day. We should work with joy and never spend time with things that are boring or bothersome. That is why humans invented technology in the first place.. to free our minds and bodies from boring repetition.

Ironically instead of freeing us to progress some indiviuals have used that technology to trap us even more. Sad. Life is too valuable to waste that way. On another level most of the major religions have tried to create a dream paradise on the other side of death. They do not seem to realize that as they make the afterlife more important, they diminsh the value of this life in reality. In fact these days most people are so convinced that the afterlife is wonderful they totally ignore the reality of this life and spend many days unhappy and eventually they end up like me with organic damage and wondering if tomorrow will really come.

If I leave nothing else behind other than this blog then I want to convey the importance of life.. this life.. here and now. Ayn Rand understood and wrote about it. So did many others. Life is so very wonderful. Cherish each day and life like it was your last. I know this is very hard in a world of people who think heaven awaits, but one must try. And at least that is worth the struggle.

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December 16th, 2006
Some days you are the pigeon... some days you are the statue! Today has been a statue day so far. I am not feeling well and I suspect that my troubles are related to my gall bladder and it's questionable status. No doubt in the near future I will have to have the poor thing removed. My body is becoming like an old car with worn out parts. I only wish there was a "junkyard" where one could go and get some pieces.

My most recent scan showed cysts on my liver. I knew they were there, but it is always harsh to get a report on sizes and locations. Somehow it makes things more real. Polycystic kidneys are bad enough, but polycystic liver and everything else is a real bother. I guess in the end we all get a certain amount of time and then "game over". What does one do to make the time count? I ask myself that question often.

When you have seen the end of the story you get a strange sense of calm and of what matters. You start to ask what can I do to make it all matter more? Truth is you can only do what brings you joy. So to that end I have installed a donation button on my page. Since I don't get all the government help that I was hoping for I am asking people to randomly donate if they can. I am hoping to pay off some of my medical debts so I can perhaps do a few things that are more fun before I run out of time.

I will still keep working on my programming efforts but perhaps if I can get a bit of help then I can make better progress. I have to do something because I sense I am running out of time. Not sure why, but call it a feeling that I am getting closer to the finish. Could just be my mood today... who knows. Hell.. call me depressed. It fits today.

I also added a gizmo that shows things that happened on this day in history. Why? Because I liked it and thought it was cool. I think things like that are neat. Let me know if you like it or hate it. It is really cool all the things you can do with html programming these days. The scope of the web is now bigger than a single person can grasp. I think that is cool. So in that spirit I will be adding more things as the days pass. Some fun and some useful. And if you happen to need some programming help or work then let me know. I love a good project and a good challenge!

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December 15th, 2006
You may notice as you browse about the website today that I have added some advertising in a couple of places. On most days I would agree that there is entirely too much advertising in the world and most is for pure crap. So why do I have some on my website now? The reason is simple: I am trying out the code links to learn how it all works and how best to help my clients to place this stuff on their websites.

It is becoming a large part of being a Freelance Programmer to build and place links and banners on websites for people. One has to get things in the right places and make sure it does not jam up the browser. The best way to play with that code is to use it here and see what happens. I chose Google ads because they have the best reputation and I like Google as a search engine. I use it all the time. They also have the most sensible and reliable ad and banner program out there.

I have also placed some banners at the bottom of my main page for websites that host Freelance programming projects. If you get an idea and need somebody with skills to build some software for you or even a website then those are the places you want to go. Safe and reliable they connect you with literally thousands of programmers like me in just about all the areas you can imagine. I would have to admit that many of the programmers there are way better than I am at coding. They also get more per hour. Good code is not cheap and cheap code is not good!

What has been amazing to me is the number of people I run across trying to "cheat" the system with all the ads. They build fake pages and fake reports just to get good search results and drive more ad clicks to their system. Disgusting! Ads are bad enough, but fake websites just to support ads is like a plague. Tons of wasted space just to sell some piece of crap. I support capitalism and sales, but only of quality goods. Cheap junk is like static on a radio... annoying!

If you have any comments on my ads or the placement of them or even ideas regarding advertising on websites feel free to comment via e-mail and I will put your thoughts here with mine. Include a picture and you can smile for the world.

On a personal note: My doctor's office called today and they seem to think my gall bladder needs to go "bye-bye". Something about being dialated or some such. I was given an ultra-sound scan last week to check my gall bladder because I have had some nausea of late. Truth is that my gall bladder was about the last stop on the line to find the cause of the nausea. All the other "ideas" had not panned out. Most of it is my pills that I take to handle my kidney issues. When your kidneys quit you loose several other functions as well. Things like red blood cell production and control of some other hormones. Quite a bother really.

Alas, the pills to help with other issues can really turn your tummy at times. I am going to have to read the report on this gall bladder business carefully because I am not real fond of loosing another organ. Modern medicine seems to be all too happy to start removing things they don't understand. If it looks odd on the scan then "off with it's head!" to borrow a phrase. Personally I would like to keep as much of me as I can until there is no other choice. Ironically the items that I would love to have taken out (my kidneys... dead as rocks ) are the ones they seem to not want to mess with. Go figure!

For the most part I am stable of late. Dialysis is going smooth and I am doing okay as far as I know. It has become almost a routine event in the day. Every evening when Sandy gets home we set-up, hook me up and I sit there for 4 hours. Trust me... this time of year the TV choices are dismal at best. Lots of year end stuff and Christmas specials... bleech! Being an atheist is hard enough most of the year but this time of year it is really rough. Everywhere you turn they are shoving all that religious crap at you. And hey... I like some of the shows, but this is just tiresome.

On that note: Has anyone else noticed all the weird horror type movies and programs that are being shown this year? Most of them like "Black Christmas" are really gruesome. I don't like Christmas but that is surely the wrong direction as well. Yuck! Bad enough to see this stuff around Halloween. Sure don't need it at this time of year too. I might have to just give up on TV in general if this junk keeps up. Perhaps it is the "will of the people" but man I think I will pass.

It is bad enough as it is with all the folks being rude and overstressed this time of year. Perhaps it is a backlash from the war or the high gas prices or maybe all the people in my area just have gas? Who knows. All I know is that some of the most cranky and rude people this time of year are the Christians. Not sure why but I am sure they need to chill out a bit. Me? I think I will just hide until March!

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December 12th, 2006
Thankfully the weather is warmer today. That cold snap was hard to deal with for sure. I find that I do not do as well in the cold weather as I once did. Now I have lots of bone and joint pain when the cold air comes this way. In fact I can often feel the storms before they roll in and change things. Tennessee has great weather in the winter. Mild and much warmer than most places. I like that for sure.

My freelance programming efforts are going very slow. I have the skills I need and I am gaining new ones all the time but it seems that all the projects online are either irrational in their desires or some idiot has bid $5 or $10 bucks for a ton of work. I have no idea how to compete with that for sure. In most cases I can do the job, but nobody seems to know that. Perhaps if I keep trying and keep learning I will eventually get a chance at it all. I may have to accept a job for little money and I am prepared to do that if need be. What I really need is for the bidders to post something that makes sense for a change instead of "I wish and I want" all the time.

I still enjoy my programming efforts. I can sit here at my computer and learn things without much pain or energy output. If I can get enough cash together to purchase an older laptop I could really get going because I can hook it up to work while I am in the chair and connected to the dialysis machine. That would help a lot to be able to browse the listings while I am pinned down and not able to do much else. And it is a good thing to do while the winter cold comes and goes. Not much I can do outside anymore so no point in challenging that.

I am feeling much more clear than I was last week. I realized that my Promethazine was making me super groggy. I would take it for nausea and end up asleep for 5 hours. Not a good deal. It also enhanced my other pills so I was getting some weird changes in how things affected me. I will keep them on hand for the bad days but I think overall I will avoid taking them until I really need help. No point in sleeping life away.

As I go along I will be making changes to my website. Please bear with me as I do this and if you need some html or other programming work done please let me know. I am sure we can work out something. Even if you have no money I might do the work and use you as a reference in my portfolio. LOL... will program for food! Now there is what I need, a big cardboard sign with that on it. Who knows.. might help!

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December, 7th, 2006
I finally got all the kinks worked out of this blog page so now I can start writing in it again. I have been doing all the HTML by hand but eventually realized that I needed a faster way so I resorted to Frontpage 2000 to help me a bit. Same code, but a little faster. I am hoping I can add some JavaScript tricks and abilities to my arsenal of fun html things I can do. So much to read and so little time when I am focused.

Sandy's birthday is coming up and I have not a clue what to do for her or what to get. Being broke really sucks. Perhaps I can come up with something by then. She will be 44 this year. I am 1.5 years behind her but I know the feeling since I feel much older than my age due to the PKD playing with my bones and body systems. Growing old gracefully is easier before you actually grow old. You know... back when you were still young. After you get older it seems to be harder and harder as time messes with you. Oh well... no stopping the march of time.

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November, 27th, 2006 01:17:30 PM
I had a good time over the Thanksgiving holiday weekend. I ate and enjoyed some of the standard turkey and side-dishes and was only ill one time. I think that was a problem with some pills. One has to be careful or you get over-lapping symptoms on all these darn pills. I even was daring enough to skip my dialysis session on Thanksgiving itself. That was fun and a solid aspect of home dialysis. You get choices this way and I like choices. If you know you can do it at any time then you feel better about letting a session go for a bit so you can enjoy life instead. And I am all about enjoying life now.

I have spent most of today so far making sure I was signed up at all the freelance programming web sites. I even added some banners to the bottom of my own website. This helps me to see the projects coming in to be bid on as they come. I was also thrilled to find a program called Feedreader ( http://www.feedreader.com/ ) which is totally free. The purpose of the Feedreader is to read feeds... I know that seems obvious but it is more than that. Feeds are the newest thing online and they can give you access to a ton of information in almost instant fashion.

In the case of my freelance programming it downloads the projects for me and presents them in order so I can view them faster than before and be able to bid much sooner. It will also download just about any feed that has changing information to share. I can see this as being a program that will be open on my desktop almost all the time. Suddenly having two monitors is a very good thing!

As is the normal state of life... it is much harder to earn a living than a person imagines. I have to split my time between bidding on projects, working on projects and keeping my skills sharp so I have the knowledge I need. I look forward to the challenge but I can see how this could be become very consuming. Small wonder most of the competition is in other countries. Yes, India and other countries in that region are really on the ball with custom programming. I don't know if those guys ever sleep?! They seem not to do so... always on the boards bidding.

I think in time, however, I will carve a small niche for myself and hopefully be able to generate some much needed cash. Living as I do on charity of others is really not my thing. Not getting government help was a great thing and a terrible thing all in one shot. At least this way I know who I owe in the end. Now I must scuttle back to my RSS feeds... so much to read in so little time!!

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November 23, 2006 07:49:44 PM
You may have noticed that the blog looks rather different today. If not you might want to ease up on the sedatives. I have been working on my JavaScript and Java programming skills of late as some of you may know. Along the line one simply has to dig into HTML coding as well. All of it goes so nicely together and I was not at all happy with the way QuickBlog was doing the layout or fonts. So I shifted everything over to my own space and cancelled my monthly QuickBlog account. Hopefully by doing things on my own I can get a better page with better layouts and better readability.

Naturally, of course, there will be some weirdness until I get it all fixed the way I want. This way at least I can control the details of the HTML coding and things can be changed as I go. Please bear with me as I tweak the layout and if you desire to contact me with suggestions please do so. Personally I like the bigger and brighter font here. I thought the one on QuickBlogs was a bit hard to read. And here I can also add pictures and anything else that suits me. Hand-coding HTML may seem tedious in this day and age of WYSIWYG programs but I like the control.

My Thanksgiving day was a quiet one. Sandy and Amanda made all manner of goodies in the kitchen while I stayed out of the way. It works better than way really. I was also not feeling as well as I could and indeed just before the fine meal... I was in the bathroom loosing breakfast. Once again the nausea demon rears its ugly head. I have no idea what the trouble is but I grow weary of it all. Perhaps the doctor can work it out in the end. The irony is that overall I feel better than I have in some time. Only this stomach ailment slows me down anymore.

Well... that and the fatigue. All the pills cause fatigue. Perhaps the method behind the scenes is to make me so tired I sleep all the time and don't notice the pain? Perhaps. However, in the up time I get some good things done. I have been joining all the Freelance Programmers forums that I can. I am really surprised at the amount of software work that is out there and needs to be done. Somebody has some ideas they need made into reality... in fact... quite a few some bodies.

With the cool air coming and the holiday season upon us again I think this is a good time for me to stay home and work on my skills. I do pretty good at a desk. And thanks to the dialysis my mind is pretty clear too. Perhaps on this day I should be thankful for the great minds that have come before me? Yes, I think that is appropriate indeed. Those great minds have made my life full and abundant with things that would have seemed like magic at the original Thanksgiving feast. And this year those same minds have provided me with life extension as well. No matter what I say about it all, there is no debating they gave me my life back. Now it is up to me to decide what to make of it.

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November 22, 2006 03:16:19 PM
My calendar says that tomorrow is Thanksgiving. I say it this way because to me the holiday seems to be almost impossible. I guess my focus on my programming efforts has blotted out most everything else. I have to admit that I sit each evening on the dialysis machine wondering how to get my hands on this keyboard again, but alas, it is far too difficult to do so. Perhaps some day I can purchase a small, older laptop that can access my network here. I think that would be grand because then I could work on my coding while in the chair.

I am loving every minute of my programming efforts. They occupy my mind and have really gone well since my thoughts are calm and linear again. I am literally learning 3 languages at the same time because they are so close together. Of course my real goal here is money. I want to be able to take on freelance programming projects and earn money in the process. Since the government decided I am not worthy of their gun-point hand-outs then I welcome that concept and I say "Shove it!". I will make my own way in the world like a proper objectivist.

This also allows me to do what I want, how I want and when I want. No rules and no concerns about breaking some silly regulation. There is great freedom in being your own person. I still get Medicare but that is more between the dialysis clinic and the government than it is with me. I honestly have no idea how it all works but I am sure that there is great deal of fraud happening. Somehow my little bit of money that gets spent on me is nothing in comparison to the other things the system does.

I think my family is going to do some cooking and such tomorrow. I know Sandy and Amanda have some new things to try out. I really loved the new brined turkey recipe. Good stuff... and all I have to do is clean out the cooler and eat it. Very nice! Of course we don't really celebrate the actual holiday or any other for that matter. Being Atheists there is nothing to celebrate as such. Still because the society thinks it happens then we must deal with it. Okay.. so we will buy some food goodies and eat a bit. No harm.

I wonder about Christmas this year. I see signs of economic failure on every corner here. Knoxville is a booming place but there is still a lot of small business that struggles. More empty buildings this year than last. Sign of the times? Perhaps... hard to know for sure. But I am glad I can live on less. I think as the years tick past all of the American society will be feeling the crunch. I can only hope that better minds will prevail and find the solutions we need.

As for me.. I am going to continue to enrich my mind. With computer books at McKay's used book store being $5.00 or less for most of them, I am going to be a very well read person and a master of technology. Heck... for $100 I could not carry all the books I can buy. Since I love books I find that a very warming thought. And I do love books. If I won the lottery I would right away purchase a book store. Now that would be paradise to me. However, one step at a time. First I just need to figure out how to earn enough to feed myself. So if you know of anyone that needs some programming help.. send them my way. I look forward to the challenges.

6:42pm Monday, November 20th, 2006
Tis Monday once more. Not that this day means anything to me as such but for most of the world it means returning to work. My days are pretty much the same all the time due to the dialysis each day. Sometimes I get a little lost as to what day it is and often have to check. Much to my amazement it is only a few days until Thanksgiving again.. wow.. how time passes anymore. Days just seem to come and go so quickly.

It was a chilly day here today and indeed actually snowed for quite a while. First snow of the season here. And, of course, it was gone just as fast. I like that aspect of the southern weather... comes on quick and melts in a day or so. Winter like that I can deal with. I was a little sore today because I always get sore when the weather shifts. Darn joints. Thankfully it does not take all that much in the way of medications to handle the pain. A pill or two and all is well for another few hours.

Java programming or the learning thereof is going well. It is a lot to remember and one has to deal with the object orientation factor as well. Even so I am making good progress. Java is a lot like C and that has made things easier for me. It is a very powerful language for sure and I am looking forward to being able to build cool things with it. The way it functions on the Internet is the real power I think. Being able to build programs that run from a web site is a very positive thing to have in your programming arsenal these days.

I have come across a great web site called http://www.GetACoder.com where all the freelance programmers hang out and bid on projects. I am looking forward to the day when I can start bidding on more projects there. Most of the really big programmers or groups are in India and Sweden from what I can tell. The world has become a global market and one has to consider that they can be outbid by a guy living in a hut now. I am not sure the American public is ready for true global trade prices. Might be scary when they see how that all works. Even so I am ready to play the game and get in there. We shall see how I do.

1:28 PM 11/16/2006
Having finally found some relief from my terrible stomach issues and nausea I have started doing things once again. Yes, it means I have to take another pill each day but at this point I think functioning is more important that worrying over pill counts. The pill is Prometrozine or something of that name. I had to see a new primary care doctor to get it. At least this doctor actually seemed to take an interest in me. Things are not perfect because the new pill now makes me very tired, but I plug onward.

Over the last few days I have been working on Sandy's web space. She is trying to get a small food catering service started and I am helping to setup the menu system so her customers can see the upcoming food and hopefully be able to purchase it online. I remember most of my HTML but have had to pull out some old books to refresh the hazy parts.

I am learning Java as a programming language so I can add even more cool things to the site. I do so love a good challenge and big, fat computer books. If the book weighs less than two pounds I think it is a lesser thing. LOL... ah.. me and my big books. I am old fashioned in that aspect. I love a good book even though online reading is often more current. I just think reading at the computer for any length of time is tiring. Nothing like a good book when you want to be portable. Same for movies and TV shows. They are very hard to watch when you are at the computer in my opinion. I think that is ironic since my computer has a better DVD player than my TV.

Java programming has gone very well in terms of learning and remembering. Some things that I did not understand before are becoming more clear to me now. I find that is happening a great deal these days. I seem to be calmer and better able to deal with the world at large. It is hard to be too upset over my ailments when I do better now than I did before I was diagnosed. I don't know if it was the worst thing to ever happen to me or the best. I guess that answer depends on the day in question.

However, despite my lack of writing here things are going okay. Truth is I often forget or have nothing interesting to say. Perhaps the world would be a better place if people only spoke or wrote when interesting things happened? Hard to say but I would be willing to try it out for a few days. And with that thought... back to learning!

8:30 PM 10/21/2006
I have been a little under the weather of late. I seem to continue to have great pain and nausea and I have little clue as to why this is happening. I strongly suspect a combination of pressure internally from my kidneys getting bigger as the cysts continue to multiply and general pain from all my joints hurting due to bone damage from my failing kidneys before I was able to go on dialysis.

I certainly know when the rainy days are coming as rain and clouds makes all my joints hurt more. On the bright side I rarely need a weather forecast anymore. Thankfully my visit to pain management on Friday was uneventful and I was able to get what I needed from them to smooth out my pain. I do wish they would get a clue and stop treating me like a drug dealer in training. Now they even demand that I bring in the empty boxes and bottles if I run out of medications. I assume this is so I can prove I did not sell the patches on the street. Although one has to ask why a box proves anything. I am sure I could sell them without the box if I wanted.. rather a stupid rule. I find that Medicare, the dialysis clinic and government in general has many really stupid rules.

I have been active on eBay once again. I am trying to sell some things that I no longer need. I like eBay overall but things there have really changed over the last couple of years. As the fuel costs rise and the shipping rates reflect that rise, people on Ebay seem to be loathe to pay much for the item. Instead they seem to think of the shipping cost as part of the price. I can understand this thinking but they seem to not realize or care that I never get the money for the shipping. I guess in the future I will have to make sure I price things higher to start. eBay loves to advertise that they have under a dollar auctions but that is just not real in today's economy.

It has been nice to generate a few dollars here and there. I really would like to get back to working in the shop but I am wondering if that will ever happen. I cannot seem to get a handle on the pain and nausea troubles. I really just need some good days. I have even begun to wonder if there is something about the daily dialysis process or the NxStage machine that is causing me grief. I don't recall ever feeling this way while on the Braun machines at the clinic. I hope that is not the case because I do like doing home dialysis most days. Sometimes it is a drag but overall it still is nice.

On a rather random note: I have been noticing squares and cubes of late. Is this really happening or am I going nuts finally? I see them on TV ads and in stores. Even toys and games have taken in cube shapes and themes of late. I am not sure what is gong on but if you watch TV and the world at large with open eyes I think you might see it too. Perhaps 2006 is the year of the cube? Who knows... just something I am seeing a lot lately.

Of course the cube or box is a uniquely human shape. It is very rare to find right angles and cubes or boxes in nature. Sometimes mineral formations will come out with square shapes now and then but cubes and boxes are a hallmark of humans. We really go nuts with them too. We are born into cradles, live in cubes called houses with smaller cubes called rooms. Most vehicles are mostly cube shaped. Offices are cubes and all of our internal spaces are some form of cube. In the end we get buried in a cube casket and placed in a cube shaped grave or cremated and placed into a cube shaped cubby.

I am sure it is simply the fact that we love the space and function of squares and cubes that causes us to use them so much. And they are quite useful. I learned years ago when I was building a house with my father that square rooms give you more floor space that even rectangles. It is interesting to me that when humans make movies and tell stories of science fiction that the first thing we do away with is the square shape. Indeed most visions of the future in movies are anything but square. One interesting variation on that theme was the Borg in the Star Trek series. They carried the idea of cubes to a new level although inside their ship everything was once again twisted and non square. Just an interesting concept to ponder.

I guess I should indulge myself and do some research on cubes and see if they ever appear in mystic literature. I don't recall that shape very often. Mostly triangles and circles come to mind. I shall have to investigate that more. As a last thought on the matter: Check this URL and see what I mean... http://www.radicagames.com/cubeworld/index.php Even the toys are cubes now!

Enough of that for now. If you have any thoughts on the matter feel free to comment here or e-mail me at jim@jimcales.com as I do love a good thought provoking comment.

1:31 PM 10/15/2006
Today is Sunday and nature is living up to the label today. Fall has arrived in East Tennessee and the weather here is very sunny and just a bit cool. Just a bit cool translates to "I get to wear a nice looking leather jacket but not look like I am freezing". Basically a lovely day.

Sandy, Amanda and I went yesterday to a place in the Smokies called Cade's Cove. What a lovely place to go. It is a small valley that is ringed by the mountains. You drive around the entire area in your own car and there are numerous places to park and enjoy the natural beauty of the area as you like. It is a free deal in terms of getting in and only your gas is required. They also have biking and walking trails along with hay and carriage rides. Truly a nice place to visit if you are in this area.

I enjoyed the day because I was feeling pretty well. My days vary so I take what I can get and try to make the most of it. It was a perfect trip for me because I was not required to walk if I did not wish to do so. With my cranky bones and sore feet that is a very important issue. I was also fortunate enough to see some of the advertised wildlife there. We saw a couple of deer up close and personal and a large male black bear foraging about in the woods. Later in the trip we got to see a mother black bear and her 3 little ones in a field. All of it up close and personal. Just delightful.

One could even get out and interact with said animals if you desired, although it is not prudent to go out and bother a bear. Most people seemed happy to spend time taking pictures and letting the creatures alone. Since the park is a protected haven this a good thing because the animals are not concerned about the humans at all. You get to see them very close. And, of course, the entire area is just lovely as the fall colors start to appear. It was a truly great day for me. I so rarely get out anymore or get to go places.

Thankfully over the last few days I have been feeling better. I discovered that I have a problem with hydrocodone and I stopped taking it. That really helped me get my legs back under me. So back to the patches and Darvocet we go. Hey... as long as it works I don't mind one bit. My entire goal here is to live as well as I can for as long as I can. If I can feel better during that time then so much the better. Nobody wants to live forever if they feel like crap the entire time. Everyone wants to feel great or at least good when being immortal.

I think in many ways that is a concept that gets neglected by the medical professionals. They are trained to do what they can to return a sick person to a state of wellness. In some cases they do really well but in other situations they drop the ball. Most of the situations where they go wrong are the ones where a person is never going to really be right again. They often seem to think that all people can be made whole again if they just try hard enough and honestly that is not real. There are some folks like myself that are simply never going to be whole again. We can live better lives with some medical help, but going back to perfect is not going to happen.

People in my situation are a different deal and I think our society needs to just realize that and let us be. I am not asking for more handouts and more help. Quite to the contrary I think we sometimes need a lot less. And we need a lot less rules too. Rules to prevent abuse and things like drug addiction don't really apply to a person that knows the score. I am fully aware of my limited time and I cannot imagine doing things to harm myself. In fact... most of the time I strongly disagree with my care providers because they want to do things that are simply not required. Just make me comfortable and let me be. There are days when I actually feel forced to do things to improve my health. Things that I know are not going to work because I am not going to get better.

People like me are called "non-compliant" sometimes but that just reflects the ignorance of the medical professionals. I am not trying to buck the program, I am just trying to be comfortable and deal with reality. I truly wish there was a way for my care givers to live in my body for a few days and get the picture. Then I think they would understand. Some of their efforts bring more pain than help in the end.

On a slightly different note: Sandy and I were talking this morning about people. We often do this because we are often amazed at the way people act and react to the events of life. My illness has been a very interesting event that has caused a lot of people to act differently than normal to and around us. It makes for some great discussions for sure.

We have noticed that many people in the world seem to be working at an emotional state of a small child. They seem to have serious problems with minor events that happen in their lives. Most of these events are so simple to fix or deal with as such. Most just require a simple response of logic but instead they are often "solved" with a huge blast of emotion. And as you might guess... that rarely works.

We have discovered that most people seem to be trying so very hard to get attention or caring in some form or fashion. A good example of this is our chiropractor. He is a very successful man with a lovely wife and great kids. He makes a ton of money and has the admiration of his church peers. However, even with all of this going on he seems to need more. To this end he has started taking missionary trips to India. I have no idea what he does there, but I am sure it involves giving away money and tons of spiritual advise to the starving children of the slums.

My primary concern is that while he is away the hours of his office are changed so that it is almost impossible for me to get there and recieve the care that I pay for. And of course the office is plastered with pictures and crap about his journey and the great need for our help so he can help them. This is just plain wrong and exactly my point. Why must my life be changed for his needs? Why must I pay attention to his life and/or interests as the customer? Ironically it is all about him demanding that I care about his issues and pay attention to what he thinks is important in life.

Naturally I could give many other examples of the same behavior among other people I know. It seems like the vast majority of people I meet are always trying to ram some issue into my mind because they need attention or caring. This could be how they feel or what they think or even the trauma of the events of their lives. That would be those events I mentioned that are so easliy solved with a little clear thinking or logic.

Sometimes it gets to the point where if you subtract the ability of people to push emotional issues at you there is nothing left to speak about at all. They truly have nothing positive going on nor do they want to speak of anything else. I have actually had people cringe when they find out about my illness because it means that they cannot push their troubles into my life. They actually admit that their small problems are nothing compared to mine and therefore they feel really lame speaking about them to me! Can you imagine? They actually know their emotional issues are small and pathetic but they really wanted to whine about them anyway. Somehow it makes them feel good.

It is really something I tell you. I personally try to speak very little of my problems. Sure I do so here, but you can ignore that or not read it. Your choice. And I run across it so much out in public. I have actually had people stop me and comment on things like my walking stick simply to engage me in conversation so they can then dump their issues and view of the world on me. Total strangers! After a while you start trying to avoid people. Evenutally I have to even get a little rude. Most of the time I would do anything to avoid speaking to people even when I am lonely because I know it is going to be an emotional dump as soon as they can.

Clearly our world has become a strange realm of people that think nobody cares about them. And they are getting really militant about demanding "airtime" to vent their emotional troubles. If you think I am nuts then I challenge you to listen carefully to your freinds and aquantances for a few days. See how much of what they say is just emotional drama. Keep an ear open for the need to push information you don't want into your mind and world. I think if you listen a bit you will find as I have that 90% of what goes on around us is just emotional "static" pumped out by some very mature 5 year olds.

9:25 AM 10/8/2006
I was just sitting here at my computer on the quiet Sunday morning and I was playing with the new Internet Explorer. Microsoft has released a new version of it, version 7. I rather like it as it has nice features and works well. I was looking at different web sites on my favorites list and browsing links from some of my mail lists. Mostly just seeing how the new browser works on different layouts.

Naturally, of course, I am always interested in all things kidney related. I noted a message in one group about a disease called FSGS. It is another form of kidney ailment that does what PKD does with less swelling from what I can tell. In the end you still end up with no function. I then popped over to the PKD foundation ( http://www.pkdcure.org/ ) to see how they are doing. If one clicks on the "About PKD" link you get a small summary of what PKD is and does. I quoted it here for you:

Polycystic Kidney Disease is the most common genetic, life threatening disease affecting more than 600,000 Americans and an estimated 12.5 million people worldwide - regardless of sex, age, race or ethnic origin. In fact, PKD affects more people than cystic fibrosis, muscular dystrophy, hemophilia, Down syndrome and sickle cell anemia combined. Polycystic means multiple cysts. In effect, PKD denotes multiple cysts on each kidney. These cysts grow and multiply over time, also causing the mass of the kidney to increase. Ultimately, the diseased kidney shuts down causing end-stage renal disease for which dialysis and transplantation are the only forms of treatment. PKD comes in two forms. Autosomal Dominant Polycystic Kidney Disease (ADPKD) is the most common, affecting 1-in-400 to 1-in-500 adults. Autosomal Recessive Polycystic Kidney Disease (ARPKD) is far less common, affecting 1-in-10,000 at a far younger age, including newborns, infants and children.

Now you may wonder why I bothered? Good question. The answer is that I never see anything on TV or in print about PKD. It is very rare to even hear of it. Ironically very few people at the dialysis clinic even know much about it. Most people in the clinic have diabetes from what I have seen.

I am concerned over this because in truth, PKD is not sexy! That's right.. it is not at all popular or sexy as diseases go. I am unaware of any famous people that have it and 99% of people that I speak with each day have no clue about it. Yet it effects 1 in 500 people in America right now. And this is by no means all the forms of kidney ailment possible. let's hop on over to the National Kidney Foundation and see how many people are afflicted by all forms of kidney issues shall we? Again quoting from the web site of the Kidney folks....

The Facts About Chronic Kidney Disease (CKD) -20 million Americans - 1 in 9 US adults - have CKD and another 20 million more are at increased risk. -Early detection can help prevent the progression of kidney disease to kidney failure. -Heart disease is the major cause of death for all people with CKD. -Glomerular filtration rate (GFR) is the best estimate of kidney function. -Hypertension causes CKD and CKD causes hypertension. -Persistent proteinuria means CKD. -High risk groups include those with diabetes, hypertension and family history of kidney disease. -African Americans, Hispanics, Pacific Islanders, Native Americans and Seniors are at increased risk. Three simple tests can detect CKD: blood pressure, urine and serum creatinine.

Well, that certainly covers it all. Basically 1 in 9 adults in America have failing kidneys! Why do we never hear about this killer? I think it is because so much of what people do in a day is harmful to the kidneys. Things we eat and drink are certainly up there on the list. It would never do to have people stop eating and drinking trash just to protect themselves from harm. If that happened tons of money might never be spent into the pockets of food and drink producers.

I think it is also not sexy to have a kidney disease because, in my experience, people like to classify it as a "later, later" issue. What I mean by this is that people seem to be very concerned over a thing that kills you in 6 months, but things that kill you in a couple of years or more seems less important to them because everyone dies of something, right?

I hear that all the time and it is very annoying. Never mind the daily pain or the terrible side effects... as long as I am going to live for more than a year this way, then there is no concern. It also does not create lots of emotion or angst because it is so slow overall. People seem to have really short attention spans and I think they honestly get tired of thinking about problems in life for more than 5 minutes. Everyone wants to evade reality and go off in a happy, happy mode. One must never be down or sad right? One must always be positive and upbeat.

See.. I spared you my choice of nasty thing to say.. nice of me, eh?

I am endlessly amazed at how people act in the modern world. The word that comes to mind most often is "infantile". It is almost like humans no longer want to think or deal with the world at large. They want it all to go away or better yet... have a parental figure deal with all the "nasty things" out there. I think this explains the current political leaders and the current religious leaders. Both groups are trying hard to be in charge of all your troubles but at the same time do little or nothing to solve them.

Normal and responsible adults are concerned about themselves and the world they live in each day. They do not abdicate all concerns to leaders, spiritual or political. And they do not act like children or ostriches when confronted with problems. They act to solve them. Even if those problems and challenges are not sexy or popular or the topic of the moment. And they do not try to reverse nature in order to cover up all the problems. I see that one happen a great deal anymore. Perhaps that is a tirade for another day?

In the end I find it disheartening as a PKD patient. Not because few people pay attention to me but because they really don't take the time to be aware of the world around them. One could really say the same for most diseases and issues. People these days just seem to wander about looking for some relief from whatever situatuion plagues them the most. Just once I would like to see people actually start to deal with things that mean something to them personally instead of blanking it all out in hopes that it just goes away.

3:41 PM 10/3/2006
Life is much better with stronger Duragesic patches. Using them has resolved much of my troubles of late. I am able to eat again and also able to move around better. I have to admit I am very glad because I was getting very tired of not being able to function. Heck, some days I could not even take my pills for all the nausea.

I still have some aches and pains due to my bone damage but I find them tolerable. I just could not deal with whatever was really tearing me up last month. Ironically I never really got a very good answer regarding that matter. CT scans say my cysts on my kidneys are shrinking. I guess in time the kidneys simply give up and dry up to nothing. I am not sure of this because I feel like things are getting bigger in there, not smaller. It could also be something else but getting anyone medical to care takes an act of congress.

These days fatigue is my greatest issue. All the pain medications drag me down and make me sleepy. Same for the blood pressure pill I take. Indeed I am sitting here yawning even now as I write this. I only have 12 hours each day because I do dialysis at 6 p.m. each evening. If one gets up at 6 a.m. then that is all you get. Most days I am lucky to manage getting up that early. Sometimes I sleep in for a time. Again... all the pills drag me down.

I am not so much complaining as trying to figure out what to do with my choppy life. It is very hard to undertake projects with all this fatigue hitting me. I had the same trouble for almost a year before I went on dialysis even though I had no idea what was wrong then. I was just always so fatigued. I know now that most of it is the low red blood cell count. Hence the reason I take the EPOGen. Even so I struggle forward as best I can.

I don't have much to write about today really. All I have done today is spend some time shuffling some items around the house. Things that needed to be someplace else and not in the way. Thankfully Amanda was able to assist me or I would have gotten only a little done. I am not sure how I would even function if she did not do all the things for me that she does.

Nobody ever mentions this massive fatigue when you sign on for the dialysis process. They say nice things like, " you'll feel a bit tired" or " you'll have to reduce your daily efforts just a little". Ha! How about you will barely be able to drag your ass off the couch at all in a day? That seems closer to the truth.

I must admit that in the last year since I started this process I have been lied to more often than ever before in my life. Stupid lies mostly.. things regarding how I would feel and be. Oh well.. in time perhaps things will improve. Right now I think I need a little nap.

12:06 PM 9/28/2006
Since today was a bit of a rainy day I thought it a good time to catch up on things. I have not been very good about making entries into my blog. I do have an excuse though... one has to have a decent excuse in this society right?

In actual truth I have been rather ill of late. Last week was the worst and I was not really sure I was going to make it. I actually went to the Emergency Room on Monday night of last week. University of Tennessee has a great medical facility but the darn thing is constantly full or busy. I suppose if you were really dying it might be a good place to go, but otherwise the old adage of two aspirin and call the doctor in the morning seems better.

I also saw my primary care doctor, a new urologist, and my dialysis clinic nephrologist in the same week. I thought I had some serious swelling in my kidneys since I was feeling bloated and in great pain but they all assured me that my kidneys and cysts were actually shrinking. Eventually I was able to get back into the pain management clinic and get some better pain patches. That seems to have helped quite a bit.

It is very frustrating to hurt so badly and feel so sick and not a soul seems to know why. I would think with CT scans and MRI units it would be a simple matter to scan me and know in 10 minutes why I hurt. Between that and the blood tests I am rather well studied. Even so there seems to be a constant mantra among the medical types: "That's not our area of concern". After a few visits you really want to give up and just go home to die in peace.

I have no idea why all the doctors seem to be unable to explain my situation. They certainly seem to be able to give me numerous pills for it all. And I notice the visits all get paid at a high price even if there was no knowledge gained. I sure wish I could do that. Would it not be great to do nothing but look busy and then charge staggering money for no answers? Too cool... great work if you can get it.

Personally I just want to know what to do to feel a bit better so I can live out the rest of my life in minor pain. I am not looking for a cure of all ailments because I know that is fantasy now. Ironically all the medical people I deal with are so afraid to say it. I think they are more scared of death than I am. Sometimes you just have to say you can't do anymore and let it go. I am okay with that.. just wish they were.

Much to my surprise my Mother called me this morning. She reads my blog and was concerned that I had not been writing here of late. And she was correct. I have not been well. We had a nice chat. My younger by 3 years sister also has Polycystic Kidney Disease and is in a serious amount of pain. It sound in fact like she is in worse shape than I am all things considered. PKD spares nobody when it ravages along. Ironically it changes a little and each person has different pain levels and troubles.

My sister is a chiropractor and is wrestling with the illness while trying to maintain a business and family too. I am not sure how she does it really. I know my life crashed pretty hard and only now a year later am I even beginning to think I might be able to go forward for a bit. I don't think anything can prepare a person for the changes this disease brings. It is odd though that she knew long before I did and yet I ended up on dialysis first. She is still in the early stages. I can see now that I was suffering the illness but I did not know it then.

On a brighter note I have been able to get out and walk a little this week. I actually walked with my stick up and down the street in front of my house a little for the last couple of days. Might do it again today if the rain holds up a bit. It has been very nice to get out and get some fresh air and sunshine. With all my arthritis troubles I was beginning to wonder if I was ever going to be able to go walking again. I guess the answer is "yes" although I putter along pretty slow. My daughter Amanda and our dog go on ahead and loop back a few times around me. This is nice in case I keel over... somebody can come and pick me up.

Honestly it seems so strange to concern over such a thing but I actually have fallen a couple times. I just seem a little unsure anymore. I was not aware that falied kidneys would steal your balance but so it seems. Mostly I have to concern over the low blood pressure moments. Mostly I just go really slow. It is the same reason I don't really drive anymore. I am so loaded up on drugs that any cop would be right in hauling me in for intoxicated states. All prescriptions, but they do mess with your senses and reactions. I have no idea how all these old people with 20 prescriptions manage to drive. Then again... watching them do so.. I think they are playing with fire.

Perhaps in time I will be able to get stable again and try once more to rebuild my life. It is a tough ride. In my case I have a tougher time of it because I let my illness go for so long before I realized the problem. If I had known what was going on I might have at least saved my bones. Nothing could save my kidneys. Now I have to wonder how long before I need to get them removed. They no longer do anything so problems might be avoided that way. Honestly I am against the idea simply because I don't want to spend another 6 months in recovery, but eventually I might have no choice.

It may also be time to start considering the idea of a kidney transplant. Daily dialysis is really cool but it is no replacement for what a healthy kidney does. Even on my best day of dialysis I am still a mess in the blood chemistry department. Might be time to consider that avenue of treatment as well. Hard to know.. transplants are not a cure either and only buy time again. What I really need is cloning technology for tissues, but that is many years in the future I fear. Even cloning my crappy gene code would give me good kidneys for 10 years or so. Eventually the PKD would come again but time a precious thing I find. I think it would be worth it. I don't think anybody really wants a whole clone, but a few parts might be handy.

Well, I see there is sunshine so walking is a possibilty. Perhaps I can get a little farther this time? It seems so slow, but I guess I can be happy that I am still walking at all. My thought for today is enjoy your time. Things change so fast... you never know when you will do something for the last time. I was surprised. Go walk in the sun. It is worth more than you think.

3:33 PM 9/15/2006
Another shaky day. It is getting a little old to wake up in the morning and feel pain and nausea right off with the first thoughts of the day. I spend the first half of the day trying to fight vomiting and struggling to get some pills into me to numb the pain. I have no idea what my kidneys are up to anymore but I wish they would settle down a bit. I could use the break.

I think the fall weather has arrived here in Tennessee. Nice days and cool nights. Still warm enough to have the windows open but nice enough that one no longer needs the aircon. I like the spring and fall when the weather gets this way. Life seems easier for a time. I think, however, that I need to buy some new pants. Over the summer I seem to have gained some weight and none of my clothing fits anymore. Not much of a surprise really since I was so underweight before I crashed last year. I really needed to gain some actual weight and muscle but it certainly has made all my clothing fit very tightly!

I have been struggling of late to clear some space in a spare bedroom as well as some space here in the basement. I seem to be plagued by lack of energy and a serious cardboard box issue. I find it amazing how fast boxes can multiply. I get about 60 of them per month with my dialysis supplies so I have a rather continuous supply. I had really hoped to use them for shipping eBay items but I have not been able to get back out to the shop of late. However, if I can ever get back to making wood products I will have the shipping issues all handled. It is a pity I cannot sell these boxes to others doing the same thing. I might make some money that way.

Money has been a difficult issue for sure. I do get Medicare coverage although I have to pay for it like the insurance that it is. I did not qualify for disability benefits. That was a shock. Everyone tells me I need a lawyer, which I am sure is true, but it seems damn rude that I have to sue the government to get a few bucks when they send millions to poor people in other countries... most of which hate us. Am I the only one that thinks this is messed up?

Sometimes I think all I do in this blog is bitch and whine. I sometimes go back and read my entries and I think, "wow.. that guy is really negative". I try not to be negative here... I actually try to be very factual and realistic. I work really hard to not be down and simply to convey my thoughts and feelings in a real way.

However when I do things this way it always come out with a very negative tone. I am sure a lot of that is because I am very ill and my life is not a real happy place anymore. People do not seem to understand that but it is very true. Once they get sick then they get it, but until then it is a mystery as to why I am unhappy.

I think it is also my realistic and factual, dare I say logical?, view of the world. The world is a very insane and messed up place. There are some real crack pots in charge and very few people seem to be concerned over that aspect. I am often stunned by the reactions of people I meet in terms of what they think. I cannot beleive that all of out technology is used so poorly but indeed it is. I also cannot believe we still cater to the stupid and the slow. Does anyone get the fact that if we cater to the stupid and the slow that evetually we will get leaders of that sort and.... oh... well.. too late. Damn. Nevermind. Perhaps if fate is kind a virus will wipe us out and the planet can start over.

As long as the second-handers exist and thrive on this planet there will be little to rejoice about. 10,000 years ago the mobs rode in on horse back and stole your girls and most of your crops. If you survived they came and did it again next year. Now we call it taxes and the mob just skips the horse! What we need is some advancement in the humans as opposed to the technology. If humans acted as intelligent as our machines we could live like gods.

Until then I guess humanity will slug it out and I will continue to be disappointed in the whole thing.

Okay... yes. I have been terribly remiss in my blog entries of late. No doubt about it. All I can say is that I have been rather depressed and in a lot of pain. More in pain than depressed as such.

I suspect that my PKD has been rather active of late and I have had almost constant and daily nausea. I have been living on pain pills and naps for sure. It often feels like I have been attacked and beaten liberally. I feel so bruised and yet nothing external has happened to me. Sometimes the pain has been so bad I have had to skip dialysis... and I am loathe to do that.

I must admit that this entire episode over the last month has been quite a setback. I was all ready to get going again with life and had decided that after a year I could start to make decisions. I finally felt comfortable in my situation and while I was somewhat depressed at the loss of functions there was enough to go on.

Then all these problems started to afflict me. It really took the wind out of me. Everything was put on hold as I lay on the couch hoping to get past whatever this was ailing me. Thankfully it appears that this episode is indeed passing but it was quite a wake up call as to the nature of my real situation. Going onto dialysis was just a stop-gap effort to keep me alive for the moment but it was never intended as a cure. I am often surprised at how many people think of it that way. People think the same of gettting a transplant too. Alas, if only it was the wonderful cure so many people think.

Hopefully this latest event has passed and I can get on with life again but it has been a really good reminder of how fast things can change. And I now know to be very careful of what I do when it comes to lifting and back motions. Sometimes the simple things in life like running a vaccuum cleaner can do me in fast. I shall have to take that into account as I go forward. It is tricky to say the least because a person starts to feel good and wants to do things. And that is generally what puts you back on the couch!

However, I think if I really put my thoughts together I can figure out some things to do. Perhaps in time I can get back to at least a semblance of what I was doing before. I would like that. Sometimes I think the lack of activity is the worst. I never was a very good slacker.

8:29 AM 8/22/2006
A year ago today I was preparing to die. Things had gone badly for several months and by this time last year I had figured out to a certain degree what was happening to me. I was far too poor to get medical help and really had decided that for the benefit of my family it was going to be better simply to let go and be done. Better that than to bury them in hospital debts. Things were hard enough as it was.

I was just looking at an old e-mail from that time. My computer saves all the things I sent out last year. I wrote to family and told them of my plight. We had not been on speaking terms at that time and I finally realized I was out of time so I contacted them. I was very sure of the fact that the family genetic ailment of polycystic kidney disease had caught up with me. I seemed so calm and in fact remember being totally calm as my life faded away.

3 days later I would decide early in the morning that I needed to be sure and walk into the local ER for confirmation. By that time I was so weak I could hardly breathe and I was unable to sleep lying down. Eating was pointless because it all came back up. I know now, of course, that I was almost out of blood cells and my body was so toxic that I could barely function. At the time I was rather puzzled because I did not know all the symptoms of PKD. I also had no way of knowing that I was down to approx 5% of kidney function... if any at all.

Having gained 22 pounds of fluid and urinating like a madman I was sure the end was near. It is funny how things change over time. Only a week later I was a new person with a whole new and very different life. In a way I guess my apathy helped me because when the doctors wanted to fix me up I said, "whatever you want". I had a vague notion of the really rough ride I was in for but I think I was too out of my mind to care or resist.

And indeed it has been a rough year. So many issues and so much pain. Dialysis hurts quite a bit in fact. Not all of the time but in many different ways. And of course the PKD really messes with me some days. There have been some really tough weeks when I wonder what I was thinking letting those idiots tear me up and fix me again. However sometimes I am so grateful that they did. It is hard to know what feeling to have some days.

But I have made it a whole year now. So many changes in life and so many challenges. It took a long time to realize I had to let go of the old life and just start over. It is very hard to go for 42 years and then totally start over with less ability and lots of questions. It reminds me of being 18 again in some ways although without the energy of youth.

I suppose all of this looking back is of little practical use but we humans seem to love to consider our journeys. I think it surprises us to see how far we have come against amazing odds. In truth I should really be dead. As little as 30 years ago I would have been. Dialysis as a technology has come very far, very fast. I am often amazed that it can be done at all. Other days I am amazed that it is so far behind. I find it very strange that we do not always incorporate our best science into many of the things we do in this country. I often wonder why this is the case.

I thought that a few days ago when I was watching Modern Marvels on the history channel. They spoke of a car that ran on a jet turbine and was able to burn almost anything for fuel. Even showed some footage. Yet we seem to have forgot this technology. Sometimes I think it is all about control and money whether in the cars of the medicines. There is little doubt that my life is a slave now to the people that make millions keeping me and others on the machine.

I mention this because I considered it a year ago when I was so ill. I was concerned, and rightly so, that I would become a pawn in the game to extract money from the taxpayers. I was ethically opposed to this but had little choice but to go along or die right there. And for this I apologize to the many people that pay taxes. I apprecaiate you but you really need to vote for new leaders... the ones you have are stealing from you big time.

These days life is pretty good over all. I do have bad days but I also have some good ones. I try very hard to do interesting things with my time because I know my time is very short and very costly. Sometimes that is really hard too. Our society is not well geared to doing intersting or important things for the average person. In fact... it is more correct to say that we normal folk simply grind away so the elite and super rich can have all the services they desire when *they* want to do interesting things.

Oh yes.. being almost dead and then getting a second chance has been rather enlightening to say the least. I can see patterns of life now that I never understood before. I see how the world really works and I understand all the biological nuances that drive the world. If it was not so harsh a process I would suggest it for everyone. I have learned a great deal.

But I shall speak more of that another day. Today is a day of consideration and rememberance. A day to ponder what was and to take stock of what is. And even more important I think... to consider the future and what part I shall play in it. One has to be alive to have goals. A profound statement when that state of being is in question.

After you have lived and almost died and life is over... now what? Yes, that is the big question now. Where do I go from here?

7:13 PM 8/13/2006
I fell down yesterday. It was rather a surprise. I had been working on the computer and got up to go rest. I had been feeling a little fatigued and thought a good nap was in order. I often feel this way due to some of my medications. As I got up from my desk and started to walk towards the stairs I felt rather light headed. I grabbed a support pole located in my basement area and swung myself onto a chair that was there. The feeling was progressing but I thought I was in good shape having set down.

Turns out I was wrong. Apparently I was passing out from a moment of low blood pressure. I literally crumpled onto the floor from this seated position. The entire thing happened in 2 seconds. Too fast to really react. I had lost motor control and was only able to pull in my arms to cushion the impact a bit. And I proceeded to hit the floor.

Thankfully I was already seated as I fell. I cannot imagine how bad that might have hurt if I was standing and went down. I tried to call for help and was surprised at how weak and small my voice was at that point. I guess vocal cords go with the motor functions. I think I passed out for a moment. As it happened my dog headed up without me and Sandy noticed that I was not following. She then heard my wee small voice calling for help and rescued me from my undiginified location on the floor. Remind me to celebrate the guy that invented modern carpet with padding.

I have fallen before in my life. Who has not? But this was different. This time I was helpless. I suppose I could have eventually gotten up after a time but it was tough even with help. I felt more silly than hurt but it was a real wake up call. To get up and walk ten feet and keel over will really get your attention.

Ironically I have had many episodes of low blood pressure over the last year. Most of them while on the dialysis machine. Sometimes my pressure would get so low that it actually hurt. I have never had it happen, however, while I was just walking along. There are moments in life when a person realizes that time has passed and life has truly changed. I think this was one of those moments. It certainly reminded me that I am not the person I once was nor will I ever be again.

I have always been a big fan of change. I think change in life is a good thing and keeps the world moving. New things and new ideas and new people are always the start of progress in life. This is the first time I have ever experinced change as something I was not really so fond of or excited about. It is very hard to look in the mirror and see reality. It is even harder to live with it and admit that things are never going to be the same again.

It has been very hard to deal with kidney failure. In my lifetime I have always been a problem solver and sought solutions to challenges that migh come my way. Sometimes I do well, sometimes I don't but I always seemed to manage some interesting solution to my problems. This time I have a problem which I cannot solve. It is a challenge I cannot meet and will not survive. It has brought confusion to my days because I don't know how to act. I have never had to admit defeat on a permanent level like this.

Lots of people tell me I should keep on trying and struggle to do things. Many people give me long speeches about positive thinking and such things. Most just try to talk me out of my emotions. I think it scares them when I speak of playing the game of life and finally loosing. I think it reminds them that some day all their efforts will come to nothing too. And all the positive thinking in the world cannot change reality nor death.

I have found that as I seek answers to my questions about purpose and life that I am asking questions that have haunted humanity for a very long time. Nobody is comfortable with the idea that we come and go and that is it. Most want to think there is something more. Perhaps so. Perhaps not. Evidence so far says this is it. In my case it has me raising questions about why and what for?

What I find of great interest is that the people I run across that are just fine have no clue either. They often go in circles and hope that somehow it all means something in the end. I think in many ways humans have forgotten why they struggle so. Perhaps we never knew? All I know is that modern life seems very empty when you start to ask "why?". And when one is running on borrowed time it starts to seem even more empty.

Change is good and someday I will change again. I can only hope there is more because I like a good journey. However it seems like a better idea to work on the universe before one leaves it. I so wish I could convey that thought and feeling to the rest of the world. We waste so much time. And we have so many people who try so hard to waste our time for us. I think human rights needs to be taught again in the schools. Right now all we have is some watered down pack of lies that keeps people running in circles. Life, liberty and the pursuit of happiness was a really good list. Perhaps some day humanity will actually understand it.

Until then I think my questions will go unanswered.

10:31 AM 8/9/2006
I feel very lost and alone today. I rather fell apart last night. I guess the truth is that I am afraid sometimes. I try not to be but sometimes it just overwhelms me. It seems such a pity that a life can be so badly spent and end up so pointless. My disease has shaped my life all along the way.

I just want to do something interesting for a change. But I must admit that in the end there is little purpose to the human race as it is right now. I look for meaning yet I find none. Small wonder so many so many people race into the embrace of the major religions. They hope so much to find some sense of purpose and meaning yet all they find is more illusions created to happiness while our span of time fleets suddenly across time and space.

I know many people will argue with me on this. They need to I suppose. To stare into the darkness and see nothing is pretty scary really. I have done it. Oh I know humanity will go on without me. It has already done that a million times over. I am just a speck in a grand parade of beings. My time will come and go with little notice. Sometimes I see young people around me and I know that things will march on for a long time. This is as it should be but it seems so empty when you look at the entire span of history.

Humans are so sure that we are important. Perhaps we are in some way, but I think more to the point we are just a thing that happened in a small corner of the universe. I am so amused by the religious people that somehow think we are the chosen of this diety or that. How like a small child to stand on a rock and declare they are master of the universe. All we need is a towel for a cape and stick sword and we can jump up on that stone and be important for a moment.

I think the process of dying is the most frightening and the most interesting thing I have ever done. It challenges everything that you are and yet in my case it drags on so slowly. Plenty of time to ponder and wonder and rage and cry. It is an odd thing to see your life summed up for you and then to have so much time to consider it. Dying fast would be so sudden and this way you have lots of time to really wonder about it all. So much time to ask "what if?" and really think it over.

I suppose this is what all the old people feel in time yet I cannot help but wonder if it would be more acceptable then because you had a full life to use and enjoy. I know we all have problems along the way. That is normal. But to wake up one day and suddenly know that there is no more time. To know that you did not get to finish and even if you did it might not be enough.

I guess in a way I feel cheated really. An odd sensation but true. I feel sometimes like I was set up to fail. As I look back on my life I see that so much of it was wasted as I wrestled with a disease I did not really understand. I imagine there are many people with genetic diseases that feel that way as well. We try to live like normal people but the day comes when we realize that we did not have the same chance to play. I know people much younger than I that have been stricken by this ailment and they have it even worse.

With all that in mind I wonder why so many people in our society spend so much time struggling for resources and fighting over small ideologies. What a terrible waste. They could have worked for something bigger. They could have spent the money on more meaningful things. Every time I look at the news I just shake my head in disbelief. I see people arguing and fighting and killing over things that matter so little. How foolish they are... how infantile indeed.

I think that is the real crux of the matter. Humanity is so infantile yet. We have so far to go before we are mature and ready for the universe at large. We have barely taken our first stumbling steps as a race. I guess I just regret that so few desire to go forward and ironically those masses of people that desire to stay the same are in charge now. Life would move faster and go better if the dull people were in the follower position like they should be. Who says democracy is a good idea? Generally when the group decides it is a bad decision.

People tell me I should be hopeful and keep a positive attitude. I wonder why? Perhaps it makes them feel better to imagine only the positive things happening in life. I personally like to remain in reality all the time if I can. And in reality good things happen and bad things happen. In truth only events happen.. the good and bad is up to us. My death can be seen both ways even by me. It is just another event. I guess when they tell me to be hopeful they want me to not be negative or what they think is negative. I think it scares them a bit. I think for some reason to see reality all the time is just too much for the average person.

Strange... humanity got where we are by facing the reality of the world. How odd that so many now wish to hide from it. I don't get that luxury anymore. I like that and it makes me afraid sometimes. Sometimes reality is just so big.

10:57 AM 8/8/2006
I have been reading a new web site today. It is http://ilovenxstage.com/index.html and as the name implies it is the experinces of a man on the NxStage home dialysis machine. He has some excellent pictures and an interesting, if lengthy, article about his training process. There is also a great deal of information regarding the NxStage machine.

I would have to echo some of his emotions while doing the home training. One cannot help but feel that the staff in the clinics is a bit lost and confused when it comes to NxStage. I have often commented on the mind set of nurses in the clinics and the home training department is no different. I guess only certain people go into nursing and it shows.. man does it show. I only wish they were are intelligent as they think they are... it would make them veritable gods.

I have been having some trouble of late with my situation. My home dialysis process is going great but my kidney disease is being a bother. I have been having quite a bit of "right flank pain" ( the official phrase for my back hurts like hell ). There is nothing to be done in truth but an extra Darvoset often helps. I also rest a lot. Sometimes that annoys me because I feel like I waste my time sleeping but if I am in pain I cannot function anyhow.

The weather here in East Tennessee has been rather warm. One expects this for the month of August but news reports show that it is really warm in other places too. I think humankind is going to have to reconsider building methods and figure out a way stay warmer in the winter and cooler in the summer. I suggest the immediate ban of polyester as a clothing material. One could also kill the business suit and we would all be happier. Going to the office in a pair of attractive shorts and a cotton shirt would make a great many people a lot happier and save money and energy too.

All this warm air is making it hard to do dialysis in the evenings. Thunderstorms pop up with little notice. I don't mind the rain but the times when the power goes out are troublesome. If I lose power then I only have 2 minutes to do something about it before my blood clots in my machine. If the power comes back I can deal with it. If it does not then I have to get all that back manually. Tricky business.

I tried to use a battery backup on the NxStage machine but it was too much for the one I have. The motors are too large when it is running. Perhaps in the future I might be able to purchase a generator but right now money is really tight. My family is having to make decisions about food, gas and pills. I see millions going out to other countries from our government and I wonder why? I sure don't get much of it. Now Sandy has a part time job taking care of me in the evenings. Too bad there is no money it that for her. I bet the clinic laughs all the time over that one. We do the work and they get the cash. Nice setup if you can arrange it.

I wanted to start doing some work myself but I have been so fatigued of late it is hard to just make it through the day. Perhaps in time things will even out but so far it has been tough. I just am amazed at the requirements of getting help in this country. You have to be literally poor and homeless before you qualify for a little assistance. In a capitalist society there would not be any help. But there would also not be these staggering prices either. Only a government backed fund like Medicare could ever pay these prices for medical tools and supplies. Somebody is making a lot of money on this fraud.

I wonder how long it will all continue this way. I never thought it could go this long but I see that I was wrong. Somehow the powers that be have managed to baffle the population for a long time. I see no end I sight for that situation. I guess as long as there are people who will work as virtual slaves for the enrichment of the elite then there is no change coming. I honestly think they all hope someday they can become the elite and control others. Good luck! The families that control this game have been doing this for centuries. It is a rare person that can break into the upper realms and be a king too. It happens but one has to do some pretty ratty things anymore to be one of those folks.

Oh how I long for a day when people are where they are because they earned it. I don't think i will live to see it.

11:19 AM 8/1/2006
My clinic called yesterday to let me know the results of my last blood test. It was a Kt/V test which indicates how well I am doing and if I need more or less dialysis time. I have always regarded this as a great test because there is no point to sitting on the machine for many hours if you are not getting the cleaning you need. By the same token if you are getting too much then one can cut back a little and less time in the chair is always a good thing.

My Kt/V is now .60 which is excellent so I got to reduce my amount of dialysate from 23.0 liters to 20.0 liters. In my case that means one less bag of fluids to hang and also about 20 to 30 minutes less time on the machine depending on my weight gain for that 24 hour period. They tell me that .40 to .50 is acceptable so i really was doing quite well.

It has taken some time but all things considered this is not so bad. Less time each day, better energy, less restrictions on food and I feel pretty good most days. In a few days it will be a year since this entire adventure started. I went to the hospital ER on August 25th, 2005 and started dialysis the next afternoon about 1 p.m. after getting some blood transfusions. I was in such bad shape I needed some new blood just to have something to run into the machine.

It has been a rather long journey or at least it seems that way. In truth it seems much longer. Sometimes it seems like decades have rolled past because it has been such a change. And there have been some really ugly days when the pain was too much. I think the hardest part was adjusting to the shift in my life. I often speak of my life as ending on that day. And in a lot ways it really did.

After I awoke from the very first dialysis session I was somebody new. It was like waking up after a 20 some year dream. Only problem was my body was really messed up. Must have been a rough dream.

PKD is a rude killer. It steals life so slowly. It creeps and sneaks and steals years along the way. And eventually it steals your life force and then you are left with nothing. It takes so much just to run in place and stay here now. I am endlessly amazed at the people I speak with online and off who are lost and confused. They live in a fuzzy state of not knowing or not caring and waste away so much time. They spend time and vital energy on things that are irrational and pointless. And often they are the first to admit it.

I often look back over my life and see that I too wasted much. However I never simply threw my hands in the air and said "what the heck". I always tried to find a better way or a more effective path. I was never happy with status quo. Perhaps it is the sad lack of good morals that makes people this way? I know that very few even know what the word means.. much less have any. How can a person expect to make any progress at all if all they do is waste time in pointless hedonism? Makes no sense.

I can see, however, why they do so. If you look around a bit you quickly see a world that seems to have gone mad. It is very hard to think of the future when the parasites of the world are dedicated to stealing the present. And these days if you say no those parasites are likely to pull a weapon and use it on you. Humanity will never get far if all we do is survive. We need some solid principles to move forward. We need to do more than make it through the day if we ever expect to make it through the decade.

Perhaps the key really is all this violence. Perhaps when almost everything has been destroyed people will wake up and start to value themselves and the things of this world. Perhaps like myself it is important to loose almost everyting before you realize you can't afford to loose anymore. Maybe if all these wars and battles destroy enough humanity will wake up and be sickened at the waste of time and energy.

One can only hope.

4:11 PM 7/27/2006
Today was my first clinic visit for the monthly blood tests and possible iron supplements. In a way I was dreading the visit because I do so hate getting an IV started in my arm. I have sensetive skin and sticking needles into it is never fun. I also seem to have small viens on top where they might wish to stick things. All that together makes for a concerned visit.

However, things went well. My blood count was 13.6 so that is excellent. I got some iron and the IV was placed in my fistula down low so nothing too serious there. It hurts quite a bit but the pain is brief and always better than nurses fishing for veins in the other arm.

All things considered I think the home dialysis process is going rather well. No real problems overall and the machine is working great. The only real issue I have is facing the daily session. Sometimes that gets rather tedious when you have to do it every day.. over and over again. I think it is like anything else.. it is hard to face a process that is everyday for the rest of your life. Sometimes a person needs a break.

And sometimes I take that break. Some days I just say enough is enough and I skip a session. It does not seem to make a large difference and if one is careful you can get by pretty easy. Just have to watch the fluid intake and salt eaten for that day. I think it is an important issue to have some control and be able to make your own decisions.

Speaking of making your own decisions: my daughter will be 18 on August 2nd, 2006. Yes, it is finally time that she started deciding things for herself officially. She has been thinking for herself and making good decisions in our home for some time, of course, but now she gets to do that outside the home as well. Based on her performance so far I think she will do just fine. We raised her well and she has a good base philosophy to work with in life.

I cannot speak too well of the world she gets to live in nor the people she gets to live with as such. But overall I think she has a bright future and will be able to deal with the many idiots that will come along in her life. It is, of course, sad to consider that the world has degraded like it has but hopefully in the future there will be more thinkers and less idiots and things will once again be put right.

I regret that when I was 18 I did not make more choices and move out into the world in a stronger way. Not so much leaving home but to grab some of the power I had at the time. Now of course it all seems so clear and my path might have been different if I could have known what was coming in 20 years. They say that hindsight is 20/20 and that is so true. However I think foresight can be pretty good too if you have the philosophy and the patience to plan and look carefully ahead.

I have discovered that life is pretty simple once you understand some of the basic principles under it all. It is a sad thing that our schools do not teach any of that nor do the many churches. Both groups are pretty confused as a rule. Aristotle had most of it 2000 years ago and Ayn Rand got the rest back in the early 1960's. Truth is out there if you just know where to look. Between them they wrote out 99% of the basic principles of human living as it could and should be. In a different world reality would have been a more pleasing thing to behold. Now all we have is deception and lies. Small wonder so many young people are dis-illusioned!

However my time is over and it is up to the next generation to do better than I did. Perhaps if I have the energy I can write down some of what I have learned along the way. The amazing ability of the human race is to be able to "talk to the dead" through books and such. I am often puzzled by the number of people that never read such teachings and instead spend a whole life ignornant or worse simply studying the same book over and over without any new ideas. With that attitude humans will never manke any progress.

Our wonderful minds are only functional when we ask, "Why?". We must do that more and teach our children to ask it more too. Only by asking why and looking for answers can we really find truth in this universe. Everything else is just going in a circle of illlusion.

12:32 PM 7/25/2006
Sitting here at the computer wondering if I can get this done before the thunder storm rolls in brings to mind the heat outside. I think all the questions about global warming have been answered. On one hand I think it is disturbing that we managed to make yet another mess. On the other hand, one has to be impressed that we humans have come so far that we have affected the ecosystem of an entire planet. Now if we could just figure out how to do that in a positive way.

My experince of being on dialysis has really given me a unique view of humanity and, of course, the time to ponder such matters. I had the experince of coming to the end of my life before modern medicine put me back together. That forced a serious apprasial of my life and what I had done with it. It also forced a serious look at the world around me and how it works. I cannot say that I was too happy with what I saw and continue to see.

It is very clear that we have come full circle in many aspects. One aspect is the population issue. In the beginning of human experince there were not so many of us. I suspect we valued each member of our society because it was easy to imagine all of us not making it. As the eons passed we grew to massive numbers and now literally have become our own worst enemy. At this stage we seem to be returning to some very animalistic ways of acting because of the enourmous population and resource pressures. Soon I think we will find that humans are not going to make it and once again we will value human life as it becomes scarce.

I often ponder over these issues as I watch TV and see things online. Even just sitting at the mall gives one the impression of things going awry. There is a tension and anger among the populace. I don't blame them... so many issues are pressing on them. But down deep I think they all know that the major issue is too many humans. It is so easy to see anymore with all the shoving and snarling for money and space.

I feel in many ways like I am outside of this process now. Without serious medical intervention I would not last very long at all. I depend on my society and it's level of progress to maintain my life such as it is. I know that if we degrade further into the irrationality that seems to be spreading I will be done very fast. This gives me a unique view on things. I wish I could share this view but I have yet to run across hardly anyone that wants to know. I guess denial is safer.

It is not hard to see the pattern of history regarding our society. We move forward and then after a period we crash back into the darkness of mindless being. It happens again and again because humans like to dodge reality and pretend that things are not as they are. I see this all around me. I speak to people all the time that have a million excuses as to why they cannot deal with truth and reality at all, but must instead make things up and pretend that thinking makes it so.

The truth is they are afraid. They are afraid to face life head on and deal with it as it is in fact. They much prefer the fantasy of religion or TV or stories to reality. This is also a pattern of history. People have always wanted to elect a leader and shove all problems off to that leader. This goes back all the way to tribes in the jungle. It is a safer way to live if you never have to be out front.

We owe our progress to the small number of thinkers that changed the world. But as is the pattern of history it is the irrational masses that often swell and act and in doing so crush the progress with wars and stupid choices. One only has to watch CNN for a little while to see the next wave of madness building. If we are lucky it will crash on the rocks of reailty and little damage will be done. If we are not lucky then the wave of madness will spread and consume more and more until we are all affected by it.

I think what worries me is that I am seeing more and more of this irrational wave happening at the personal level. When I speak to people they say things that I can hardly respond to because it is so goofy. They seem to live in a dream world of strange ideas and weird thoughts. It does not take much to see that these people are unable to think clearly much less act clearly. People are lost and frightened and overall acting irrationally. And each one adds to the growing wave that is to come.

Life is pretty simple. There are some easy rules that make it straight forward to live and function. Ironically most people spend massive amounts of time trying to figure out ways to shortcut the basic rules. They invent all manner of crazy systems and create confusion all over the place.

In truth most are now simply figuring out how to exist without actually doing anything. I guess the idea is to get what you need with no effort. These second handers are a dangerous parasite. They create nothing and use everything. Beware if you corner one because they will attack in a heartbeat if you threaten their stolen livelihood. And if you try to speak to them and understand their basic philosophy you will get a whole river of crazy excuses and insane justifications as to why they simply cannot change... ever.

I meet them all the time really. They are so many now. And getting scary. So many mindless people!

11:17 AM 7/12/2006
Goodness. What to say today? It has been difficult around here of late. First it was the grind of the clinic 3 times a week for 9 months. Then it was the intense grind of several weeks of daily training at the clinic while learning the new system. Now it is the strange shift to being home all the time but still dealing with the daily impact of dialysis every night. 6 pm to 10 pm every evening.

At first glance this does not seem like much of an issue. But in short order you start wishing you could skip a few days here and there. The biggest issue is that I see Sandy for all of 20 minutes in the morning then off to work she goes. I spend the day here and she spends the day at work. Once she comes home it is straight to the dialysis process. If we don't do this then it takes half the night to get done. My actual run time is only 3 hours and 15 minutes but with prep and takeoff it gets to a solid 4. And one always hopes there are no delays. Then to bed we go exhausted.

I am finally having to grapple with the mental impact of being sick. Really sick. The kind of sick where a person gets hit with the staggering reality of never winning this game. I will be doing this until the day I die... which might be sooner rather than later in my case.

I am getting benefit from the daily dialysis process. There is no doubt in my mind about that. I feel better most of the time and I have more energy overall. Not as much as I had hoped but more than I had before. My diet has been relaxed a bit too which is very nice. I can eat fruits and vegetables now in greater quantity. I look forward to that because I have gained a fair amount of weight since I started dialysis. Too many starchy foods that the renal diet encourages. Sometimes it is also hard to tell if it is real weight of my ever enlarging kidneys gaining mass. Not all fat is really fat.

Even with all the benefits of daily dialysis I still dread the process. Needles every day and that long stint in the chair. I was led to believe that it was a 2.5 hour process 6 days a week among other things. Clearly that was hype for the sales people because I have struggled to get down to 3 hours and 15 minutes. As is so often the case the marketing hype is not real and is only to secure the check for the selling company. My clinic did not want me to quit because I was the perfect test case and they needed to prove to the money people that this idea worked. In truth dialy dialysis works.. the NxStage machine is a take it or leave it deal. Any system could do it.

What I want is not possible. I want my life back. I want to be normal again. I want to plan for the future and do things with the calm asurance that tomorrow is expected. I want to wake up in the morning and never again think about kidneys or machines or needles for as long as I live. I want to do the things I used to do even better than I did them before because I am well and healthy. Yes, it is quite a fantasy. Sometimes people ask me if I have sexual fantasies. I just smile and say no. I have fantasies about other things entirely.

The real rub is the sense of feeling alone. I have so many people telling me all about dialysis and my medicaines and my food. A few more make sure it all gets paid for some how. But nobody along the way ever bothered to discuss how to "deal" with the process. Oh they asked how I feel and then nodded enough to be polite. But they don't have any answers. Nobody has any suggestions on how to live a semi-normal life in a society that tries so hard to make me a total dependent.

Of course I get lots of advice. Tons of opinions and advice from people that barely have a clue but feel obligated to tell me how to live anyway. I often think it is more important for them to speak than for me to actually listen. Sometimes I have religious people tell me I just need more faith. My immediate thought is that if their god loved me anymore I would be in terrible shape. that diety seems to love people by crushing them. Thanks.. I'll pass.

Somehow I need to find a balance point for my life. It is however hard to walk on the tight rope with so many people pushing at you. Health care in this country is appalling, but mental care is down right primitive. Nobody even cares that you are a mind in that body. All they want to do is deal with the body. Most of the time I think it is because they are so messed up mentally that they could never offer a solution. From whence would it come? Their wonderful lives?

The American dream has become something of a nightmare. Our society has become all about power and getting to the top of the pyramid... no matter what. If one needs to lie to get there... so what? If one has to hurt another to get there... so what? If one has to do both and harm millions for years to get there... we call them successful!

I live in a world where my rational self interest policy is slammed as greedy, nasty and unkind. Yet I watch others around me and I see them do things I would never do to the weakest people in the country. If this is the face of Altruism then I want to turn away because it is far more ugly than any selfish thought I might have. I see a way to live life without hurting others but nobody wants to listen to that. Honestly I think anymore people like the slaughter and the pain. I think it lets out the anger they hold over the sacrifice they made all their life to a society that cares nothing. I suspect we willl see much more of it before we see less.

In my case I simply have to figure out how to wedge a small bit of life into a schedule that is too full. I guess the people on dialysis that do all those wonderous things we read in the newsletters must never sleep. Gosh, I feel like such a sissy because I need to rest at night. Silly me... I should just get over it and get to succeeding. Perhaps if i just stop thinking at all things will get all better? That seems to be the message in America today, "Stop thinking. Just do as we say!"

Yeah.. I can see how that is working so well.

8:45 AM 7/9/2006
My first week of home dialysis treatment has gone well. Problems have been very minor and generally had to do with arranging the room to be more effective during the treatment. The freedom of being at home and being able to do dialysis when I desire instead of when the clinic is open is really fantastic.

As an example: Friday morning I was feeling well until I ate some pasta with a new dairy based sauce. It was too much for me and I felt sick to my stomach all the rest of the day. When Sandy came home that evening I was still feeling ill so we decided to just skip the session that evening. Not a big issue really, but it was so nice to simply put it off. Last night I was feeling better and decided to go ahead. So for this week Friday became my "skip" day. It is this kind of flexibilty that makes it all worth while. I did have a bit of extra fluid weight, but I can whittle that down over the next couple of days rather than try to take it all at once.

My biggest issue of late has actually been my weight. I never seem to come off the machine weighing what I expected. Now I am trying to determine if the machine is off or perhaps my scale. I think replacing the scale will be a good start. I am feeling fine, but it really is a little bothersome to step on the scale after treatment and not be where you expect. Seems silly to do all that calculating only to be off by half a kilo or more. I guess that just goes to show a good reference point is mandatory. Yup.. new scale time.

Otherwise things are going well. We are starting to settle into a routine and things are getting easier. I know when to take certain pills and when to eat. I start hauling stuff and setting up the machine at certain times too. Eventually this will become boring and I look forward to that. Once a new process is boring then you can focus on the next thing. And in my case I have lots of things I would like to focus on again.

So much of my life went away when my kidneys failed. In truth as I look back over time I see that I was in trouble for many years prior to really seeing the disaster on the horizon. This disease affected my thoughts and attitudes as well as my jobs and home life. There is a horrifying trail back across time like a scorch mark in my history. So many times I see where the PKD changed how I acted and altered what path I chose to take. And I was not even aware of it.

Now I look around me and I see all this "stuff". You know the drill. Everyone has bits and peices of things they accumulate over the years. Things you save and things you picked up here and there. Projects unfinished and things started yet undone. I think it is normal if you live long enough to collect all manner of things like that. Heck, estate sales are made of such things. And it is interesting to see the collections of a person's life after they die. You get to view it all and say.. wow.. I wonder who this person was and what they had in mind when they bought this thing?

Imagine doing that to your own life. I came so close to death that I had given in and figured that was all there was... I was done. Yet in the end here I am a year later looking around at all this stuff that was my life. I must say that is a rather unique experince. Trying to make sense of objects and things that were me. Even my clothing and personal items seem odd to me anymore. I am a new person but there is all this old baggage if you will.

Ironically I felt the same way when my father died. I had to decide what to keep and what not to keep. Some of his things I still have and others not. Again imagine trying to do that with your own life. Don't get me wrong... I am very pleased to still be here to discuss this matter, but I don't think most people realize the impact things like this can have on a person. It will shake you to the core. I can certainly undertand that dazed look you see on the faces of the victims of hurricane or tornado. It is a similiar effect... a life that was and now is just little fragments all about.

I think the biggest issue was one of priority. When we are young and healthy and fine it all seems so important. When our health fades and we have to start making decisions about what gets done and what must be lost forever things change. I see people all the time doing things with mind and body that just boggles the mind. They act like they will live forever and never be hurt by anything. I know personally that this is not true. I know that in short order life becomes more valuable than anything else in the world.

Amazingly this puts me at odds with most of my society. If you look around America you see a terrible disregard for human life. We do things here that clearly say: "Life is cheap". How can this be? How can we treat people like they are trash, and they do things to themselves that say the same thing and then spend staggering amounts of money on them when they are ill?

Are we nuts?

I have to conclude that we really are, yes. Something has gone so wrong along the way. We say children are precious... and then we do things that speak volumes to the opposite. We say every person matters... and then do things to people that speak volumes to the opposite. We say our old people are so important to us... and then warehouse them and hope they die soon.

People tell me all the time that philosophy is stupid and stuff only professors care about at some college. I disagree. I think philosophy matters a great deal and it is clear our society has two. One they speak and another they practice. Over my lifetime I have seen very clearly that people want to be treated like royalty, but they want to treat others like dirt.

I decided to write about this matter today because it is Sunday. And all over the USA people are dressing well and sitting in pews feeling smug and all pleased with themselves. Yet tomorrow morning they will all go back to their double standard and act horrible to others all week only to do it all over again on Sunday. I think it is time for a change. I think it is high time people started getting real, growing up and acting like they care or acting like they hate you. Either is fine.. but stop pretending!

Stop playing the games and hoping to get by with it. I know.. a futile dream but I can hope. Perhaps someday all the people in the world will have a chance to reflect on the priorities in life and consider doing exactly what they say they will. Perhaps in some far flung future people will decide that self deception is just not worth it anymore and we can all settle down and be happy.

I know I look forward to that day.

12:55 PM 7/7/2006
Just a simple entry today. Things are going very well with home dialysis. My new machine is working well, Sandy is doing great with the needles and the watching over me, and I feel pretty darn good on average. All things considered it has been a positive decision to do this. There were times I wondered but in the end it works well.

I have been communicating with other NxStage users in the new group on yahoo. The link is http://health.groups.yahoo.com/group/NxStageUsersGroup/ in case you might also like to join. We discuss all things NxStage. And of late there have been some great discussions about the machine itself and how best to set its parameters. I think this is great because the entire idea is to get the most out of the treatments. Why spend the time if you are not getting the best quality out of it all?

Quality versus quantity has always been a favorite topic of mine. I always thought it was an obvious choice but over the years I have found that many people do not feel as I do on the matter. That never ceases to amaze me even yet.

Not much else to speak about today. Things are good and the world seems normal. In fact I might just go outside for a time because the weather is so nice. Sometimes it is good to just have a good day.

2:32 PM 7/5/2006
Independence Day this year had a special meaning to me. Over this holiday weekend Sandy and I brought home the NxStage dialysis machine and started doing treatments here at home. It has been a little odd at first because we had to shuffle the living room around a couple of times to find the best layout for machine, chair and supplies but I think we have it under control now.

It is going to take me some time to get used to the new process myself. I have to make sure that I prepare better and take some time to plan out my session in advance. I am used to going to the clinic and simply sitting down. Here I have to take more responsibility and carry supplies as well as prime the machine. I also need to plan ahead about my eating and pills because I really do not like the feeling of doing dialysis on a full stomach or with some of my pain pills in me. It is a process that takes some focus and like anything has to be done right.

That being said... what a wonderful sense of freedom. No more clinic, no more overloaded nurses, no more silly rules like keeping my shoes on my sore feet. I actually have my days back again and can plan on doing things. I might even be able to return to work in time since my days are now free again.

I am very glad to be done with the training process. Home dialysis is a serious business but not as serious as the clinic makes it. I really, really think they need to take a hard look at their training program. There is so much they need to teach you and so much they really don't. The lion's share of training is on the needle insertion and the NxStage machine itself. All the rest is just medical issues that rarely happen. In truth with home dialysis on a daily basis you would simply skip the day if things got ugly.

Of course the clinic has called me each day since I came home so they could reassert their power and control over the process. I learned very quickly that like so many other people in my life the staff at my clinic fears that someone will eventually know as much or more than they do about something. I have seen this so many times in my life. I love to learn new things with the intent of improving my life and it's quality. Other people for the most part seem much more determined to make sure nobody ever gets ahead of them on anything. They actually live in a strange world of constant fear that they will be replaced or not needed ever again.

This is a very natural and ancient biological impulse. In nature only the "strong" survive and in our current society strong translates to smarter and more adaptable. The fear these people feel is a result of bad philosophy which feeds the natural impulse to attack others that threaten their little space and resources. I know you have met people like this... they are always trying to convince the world that they are more important than you or others. They do this because they know very well if anyone ever actually tested their ability they would fail miserably and be seen as "dead weight". So they talk a lot and bluster and strut about with not a clue.

Ironically the best defense for this situation is to simply be honest. Admit what you know and learn from the people that know more. In our world there is always someone that knows more than you do about something. What a wonderful thing it is to be human and be able to learn things from other people. The motivational speaker Anthony Robbins calls it "modeling" and it is a process of mimicking the successful person. In doing this you can learn in hours what took someone years to perfect. What a wonderful thing to grow at this rate.

Of course the small minded people in the world fear this process and will do anything they can to hold onto what information they have. It is their only protection, they think, from being useless and homeless. What fools! One cannot learn new things while guarding the old ones. Often these people simply dig a deeper hole and eventually their worst fear comes true. In our current society we often see these people as high level managers and supervisors close to retirement. They think if they can just hold on a little longer they will no longer have to fight in the battle for life and space.

That might have worked long ago but not anymore. Our current society is such that if you are not of value then you are quickly pushed to the bottom. As global competition increases this will only happen more and faster. We are entering an age of service and business where information is no longer the key to success. Now it has become attitude and ability to use that information well. One has to be productiive and functional rather than just intelligent about some little tidbit.

In the near future I think we will see computer AI systems that will store all the actual data about a process or skill but it will be the humans that are needed to implement the work. I have already seen this years ago in the TV service industry. A company called Sencore developed tools and flow charts that could troubleshoot any TV in minutes. You just had to follow the logic and there you were. It was amazing but required little knowledge storage on the part of the repairman. The repairman simply needed the manual skills to follow the instructions.

I have again seen this in the dialysis clinic and in the hospital. Many people doing but only a few calling the shots because the process is refined to a science. And it makes the power/knowledge hoarder look pretty silly. They are a dinosaur of the past and I can only hope they die off soon. If people shared information more there would be a better world waiting for us all.

With that in mind I will keep on learning and growing if I can. And I offer this warning to companies and people that try to be secret about everything: you are on the edge of the cliff... and it is crumbling. In the end you are so transparent and nobody respects you. Wise up now or I and others like me will be ever so happy to shove you into the oblivion you deserve.

5:50 PM 6/29/2006
Only one more day of training, then a pointless session on the hemo floor on Saturday and I am home. Hooray! I tell you I am so tired of this crap. For many years I suspected I was a good deal smarter than most people in the world. Not all of them, but most. This adventure with dialysis for the last 10 months has taught me I was so right. What a painful lesson.

I personally find it terrifying that people we trust with our health and well being as so slow and ignorant. Be it the doctors or the nurses or the social workers or the dietitcians... they are all sure they are gods. They act like nobody else can do what they do. They act like nobody else can speak their language of big medical words. They act like nobody can possibly understand the human body as they do. They act as if not a soul on earth can help and heal as they do. They act as if they invented food.

Wrong on all counts!

Such egos! And based on nothing I find. I cannot even begin to describe the many conversations of late where I was literally sitting there stunned because I could not beleive a medical person was speaking to me in that "you are a 5 year old" tone. Sorry folks... I am 43 and I have dealt with medical things all my life. I studied science and nutrition. I read books, I tested theories and I learned lots. I am not an idiot. Add to that my 10 months of dialysis experince and I think I have a grip on most things.

The part that really staggers the imagination is their inability to comprehend technical things like computers and the machines based on them. Nowhere in our society is computer technology used more than in hospitals and clinics. Yet all of the above named people seem scared of them and unsure of even how they work. When asked about the reasons for a certain machine doing certain things they actually make things up. I feel like I am talking to a practical joker that is telling stories about the spirits of the forest that come and do things at night or gremlins that inhabit the shadows of the world. Alas... they are dead serious and look a little scared as they speak. Hoping, I think, that I will accept the load of non-rational crap they just fed me as an explaination.

People, people. What is the problem in America today? Has mysticism rotted your brains? Computers, like all machines, behave in a rational and logical way that depends on the set of instructions it has at the time. There is no magic nor wonder there. It is mathematical if anything. Yet I see people, medical and otherwise, act is if the machine has a soul or a personality and it just wants to confuse them to be mean.

Most of the time this attitude is stupid but harmless. Thankfully the intelligent minds that built the machines often expect idiots to use them and make sure little can go wrong. But when you add this attitude to life saving devices things get real weird, real fast. I have experinced this many times with my dialysis machine. They simply have no clue how it works. They only do what they have been instructed. A trained monkey pushing buttons comes to mind. Galt forbid that you ask a question or they run across something that they don't grasp. I assure you the excuses will fly!

Can we as a society really accept and tolerate ignorance of machines anymore? Do you as a person want to trust your very life to people that think a computer is out to get them? How about all the other technical systems in our world. What happens when a trained monkey is asked to do something new and your world depends on it?

We owe it to ourselves to stop acting like little children and start taking responsibiltty for the tools and machines we use in a day. We owe it to ourselves to get some education and training so we can stop being scared of simple tools in our lives. And we certainly owe it to the people we serve in business and society to make damn sure we understand the things we work with so they never again have to be terrified when they ask for help or an explaination and get that horrible story.. or worse.. the blank stare.

Personally I think America is doomed. I think in 50 years we all better learn to speak Chinese because they are kicking our butts when it comes to learning and thinking. I loathe Communists but I do admire thinkers that can get past "spooks in the sky" thinking and function here and now. As for the Japanese... honestly they already own us. I am sure they laugh over drinks about the stupid Americans that can barely think anymore. One look at the trade deficeit numbers will tell you I am right.

In a few days I am going to be home with my new dialysis machine. Short of tearing it apart I am going to tweak and learn everything about it and all that it can do. I am going to poke and prod until it is as familiar to me as a part of my body. Should a person do anything less with a machine that *is* a part of their body? I refuse to accept ignorance and I refuse to accept the old addage that I am just too old to learn new things or keep up anymore. I hear that all the time and it is just plain crap.

The older a person is the better base of experince they have for learning new things. The world is knowable. If you think otherwise then maybe I should have your kidneys because I am not afraid. Humans did not make it this far being afraid. We stood up and said "I challenge!" to the elements and nature and eventually the cosmos. We will win and we will go on because there are thinkers among us. Those of you that exist on their achievements should say thank you on your knees because without that small 5% that think and achieve great things you would starve and die.

I for one am sick of ignorance and stupidity. I think it is time for a Stupidity Bigot T-shirt. How about you?

8:35 PM 6/28/2006
Today has been interesting and exciting all at the same time. First off I only have a couple more days of training before I am home with the NxStage machine. Next Monday I will be here for the first time. My nurses are actually going to deliver the machine, supplies, my chair, etc when they arrive on Monday. It is actually quite a load of stuff. I can see there is going to need to be some shuffling and cleaning this weekend. Hopefully it will all fit well. My biggest concern is lighting but I think we have that handled too. It will be really great to do all this in the comfort of my own home.

On that thought... supplies arrived by truck today. There was the 3 boxes of dialyzer cartridges and then 45 (!) boxes of dialysate. My simple math says this is 18 days of supplies. It was an entire shipping pallet on the truck. I think I might need some more shelves. Since this stuff is made in Mexico I think NxStage might want to hurry with that tap water to dialysate machine. They will need them to save on shipping! Can you imagine if I had asked for a whole month worth??

Today's session at the clinic was interesting too. Things were going fine for about 45 minutes when Sandy noticed my aterial pressure was a third of my venous pressure. We started looking about and realized the pressure pod was not looking right. It has the job of measuring the arterial return pressure and appeared damaged. We tried to call NxStage but there was no answer on the help line so we decided to rinseback and replace the cartridge.

Amazingly in 30 minutes we were up and running again. We plugged in the last numbers and ran for the rest of the session with no trouble. I think Sandy and I did very well under pressure and we had no trouble correcting the issue and resuming treatment. I give credit to the engineers of this machine. They made it easy. I did not even have to waste the dialysate. Nice.

All things considered I think Sandy and I are ready to do this at home. We operate with little intervention at the clinic. In many ways I think we could be home now, but I suppose a little more practice will not hurt anyone. Getting up at 5:30 am however is a killer. I feel like I live at that clinic anymore. Training for home dialysis is the worst of both worlds in my opinion. All the limitations of the clinic and none of the freedom to come. Soon.. very soon. I am so looking forward to the changes coming.

I am doing pretty darn well on the new daily dialysis format. My potassium is so low that they ask me to eat more of it. Gosh.. so sad.. I *have* to go eat a bananna! I tell you it is a delight. I only gain 1 to 1.5 kilos in 24 hours so that is no big deal. My hardest part has been backing off my pills fast enough to balance out with the new sense of clean. I feel great but it is a little hard to adapt right away. I think in time it will be wonderful.

I need to start working on a new life now. I will soon have time and be home more than I imagined. And I will even have some energy too! Go figure? I never dreamed I would get this much of my life back... ever. If you are on dialysis or if you are heading that way ask your clinic or doctor. This is great. It is well worth the time and well worth the training.

And that was today. I will try to get some pictures posted to my website with links here next week. Probaly the machine and some of the parts involved. I think it would be interesting for others to see.

4:20 PM 6/23/2006
I have not written a single entry here in some time. It is not that I did not have anything to say... more that I had too much to say and too many conflicted emotions to sort it all out. Along with that I have have so little time and so little energy. Lack of sleep mostly. Darn early mornings!

Sandy and I have just completed another week of NxStage home dialysis training. It seems fitting at this point that we should finally have a day where we worked together and successfully did my dialysis treatment start to finish with not a single error. This was particularly rewarding when the other couple training with us had an air problem and eventually had to dump an entire blood circuit only minutes into the treatment. I really felt bad for them. It is only 210 cc's of blood but the mental impact is much greater.

It has been a very trying process in my clinic. I was the first person in East Tennessee to be on the NxStage and in doing so I also got to watch my home training nurses fold up like a house of cards. They seemed so lost for the first couple of weeks. Personally I blame NxStage for lack of decent training materials. They could really do a better job with that process for sure. It is possible if they had a better trained person there for a couple weeks we could have been done by now. Hopefully in the future they will do a better job in the training area.

I have not heard about the fate of the NxStage machine I returned. I know down deep that it was malfunctioning but nobody except Sandy agreed. NxStage tech support was not exactly helpful and honestly I was really annoyed. However the new machine they shipped overnight works fine so that issue was easy to resolve. The problem has gone away so I think we are there. Things now run smooth. It only took threats to cancel the account to get them onboard.

I am pretty sure I irritated my nurses over the course of the last week or two but sometimes you simply have to stand up and defend against fear, ignorance and blind following of authority. Mostly it was on minor issues like liter rates and how much weight I gained overnight. I find that nurses seem to think all weight gained is water weight. This might be the case in conventional skip a day dialysis but when dealing with daily dialysis you have to factor in the time it takes to digest food and fiber. 24 hours is simply not enough to eliminate yesterday's lunch.

A similair "debate" came up when I read the NxStage manual and realized I could cut my time by almost an hour simply by changing the rate at which fluid was removed from me. Because the NxStage machine is a water conservation machine the system makes the dialysate one of the constants in the time equation. This being the case one needs to run the liter per hour removal rate as high as possible ( and comfortable) so the system can be more efficient. It costs nothing, hurts nothing and sent my nurses into a snarl. They were trained to simply divide the water gained by 2 or 3 and let the machine think out the rest. That is fine if you want to sit for 5 hours a day. I don't.

So now I sit for about 3.5 hours give or take when I have a 1 to 2 kilo gain. Most acceptable for the great way I feel. Not the promised 2.5 hours the clinic said but certainly okay with me. I am a 100 kilo person so I know it takes time to clear the wastes in my blood.

The real star of this process is Sandy. She has learned to put those monster needles into my arm and break only a small sweat. I can honestly say I admire her for this and I could not do the same. I have issues about blood and needles. With her help I can have some of my life back once more. She also listened with patience when I had really had enough stupidity and wanted to just quit. This is not an easy process and I certainly was tested all along. Ironically she was calmer than I was through the process. That is a new thing.

I think in the future as more people learn about daily dialysis there will be a change and all clinics will start to offer this wonderful treatment plan. I personally have been amazed at the changes in my life by doubling the number of sessions. Lower blood pressure, better dietary plans, less binders and more energy! It seems too good to be true but I assure you it is very real. The downside is still the needles, but at least there is a massive benefit to balance all that needle action.

At this point we should do our first dialysis session at home on July 3rd. My nurses are coming here to watch and test us. I think we will do fine. It is a very simple process once you get used to the whole thing. I look forward to it.

3:39 PM 6/14/2006
Things have been going well with the NxStage home training so far. Today, alas, was a bit rough however. Things started out alright with a reasonable stick. However the venous pressure was a bit high so my blood flow was only 350 instead of the normal 400. My nurse wanted to just let it be until we realized that because of the way the NxStage machine calculates my time I was suddenly going to be there for 4+ hours instead of the normal 3.5 so we tried to adjust said needle.

Big mistake.

Within the hour I was writhing in pain and we had to pull all the needles. The lesson here is that messing with big fistula needles is a bad idea once they are in place. I think Sandy and I will remember that lesson for a long time to come. I ended up going home shortly after arriving but not before enduring pain that I may never forget. Such things are nightmares made of. In the end I would have been better off just sitting in the chair for more time.

The dilemma is that the NxStage machine has many parameters internally. They are set to give me the best dialysis I can get. It maintains a 3 to 1 ratio of dialysate to blood. One cannot even change some of the front panel settings unless they adjust others first. It is really a good feature but very odd compared to the machines on the floor. Out there the nurses can adjust my blood flow and time independently. That means that all things considered I can get a less adequate dialysis on the Hemo floor simply by having a lower blood flow. Many liters less blood will pass by.

NxStage has made that almost impossible with the built in safeties. However if the flow changes then the time changes as it should. In clinic that would be a disaster of overlapping times. So in the end I got nothing but tomorrow we can go back and try it all again.

It is a challenge I must say. The pain involved in this process is staggering no matter how one does it. Those needles and the problems of placing them are the weak link in the dialysis process. I cringe everyday as they go in... and I have EMLA cream in place. Today we re-stuck above the cream and I experinced a new level of pain. I was not even able to breathe for a moment. Honestly I have no idea why I do this each day. I really think being dead might be less painful.

As is often the case I find myself pondering a philosophic point over this matter. I really want to stay alive. Who does not? But to do so I have to go through some seriously painful events. The question in my mind is what does one do to make their time valuable when it costs so much to "purchase" that time?

Medicare spends tens of thousands on me. Sandy shuffles me around and arranges her life. The clinic pays staff to deal as well as machine and supplies. I personally endure staggering pain and sickness. It seems like a horrible waste to do all that and then watch TV or something of that nature. The trade-off seems so insane. In fact almost any use of my time seems hard to balance out under that load. I am too expensive for my own life!

Now I know this is overly dramatized, but you see the point. The lives of normal, average people are so valueable that on any given day they are wasting much of it. But add in the extra stuff and you really go out of balance. Imagine if to keep your job you had to actually give back all you made last year. Would you do it? What if you only got 50% of your time to do something? Would you then use some of it to "loaf" in front of the TV or sports or some game show?

Human life has been reduced to a point of almost being worthless by the same people that scream all the time about how valued we are as people. I have seen it all my life. As the population rises on planet Earth people are easy to interchange or replace and certainly not worth a lot of fuss overall. Consider wars and earthquakes and such. Millions die and hardly anyone blinks anymore because in most places they had too many people to begin with.

I know individuals are important to other individuals but overall there is little concern for "the other guy". In fact... when people die there is a sudden influx of money, property and jobs. This is the pattern of human history. It is not hard to find and logical to explain.

I cannot imagine being a college student in the world today. One would be facing huge competiton for mates, resources, living space and careers. I cannot imagine trying to be unique or different in that swirling mass of people when the world sees you as a number. A replaceable number.

So I often ponder my situation as I move into the future. I struggle to be productive even with my sickness. I try so hard to use as little as I can to try and reduce my impact on society. Hey... I know who pays for my life now. And I am so sorry that it is that way. I suspect if the taxpayers got a breakdown of costs they would be pretty pissed about who gets what. I try so hard to find useful and productive ways to generate income even though I know that I can never generate what I am consuming.

My greater concern is what happens when the consumers run out of producers? What do we do as a society when the most productive is shackled forever to the least? Will old and sick and frail be killed in the streets for stealing? Or will the productive go on being brainwashed into thinking they are simply fodder for the needy? Will they actually never stand up and say "No"?

I have answers for these questions, but I doubt many people would admire them. I saw the solution once again on a program my daughter watched the other night about wolves. In the wolf society only the strong and healthy get to mate and only those top wolves get to determine the path of the pack. And sometimes the weak just get killed. If we acted more like wolves and less like rodents I think our world would be a different place. Some might say this is harsh, but I see now as I cheat death for a bit longer that in the end we all may die with a pathetic whimper if we go on like this.

5:32 PM 6/9/2006
Five days of dialysis can make one weak.

I always wanted to use that cheesy phrase. The truth is that getting up at 5:30 a.m. so you can get to the clinic on time is what wipes you out. After five days of this I am totally dizzy. I think I see more of the clinic than I do of my house. The worst part is that I have to go back tomorrow but because the home training staff only works Mon-Fri I will be out on the regular hemo floor again. So much for dedication and commitment to health and training.

More annoying is the fact that they keep shuffling my time. Saturday I have to be there at 10 a.m. like normal. This week has been 7 a.m. all week. Next week they want me at noon on Monday, but then back to 7 a.m. for the rest.. until Saturday again. All of it stems from the limited staff and their needs. Rather ironic for a place that makes millions in a year. I am concerned about Sandy. She is having to try and shuffle all this time jumping and not get fired from her job. I guess the people at the clinic have no clue that some people actually work during all this kidney business. They certainly act as if they are the only people in the world.

After dialysis today we went to the pain management clinic. Of course late because dialysis took longer than normal. Once again we were treated like criminals and ignored mostly. And they tried to hijack our schedule too. What is it with medical people?! They are rude, uncaring and often just snotty. I know I complain about altruists all the time but I get so sick of greedy, self centered people pretending to think only of others while in fact they are just like anyone that concerns only with themselves.

The only exception to this situation is perhaps Nurse Karen. She has been dealing with me this week in what can only be called a fantastic way. She is calm and patient, explains well to Sandy and has even worked hard to establish "buttonholes" on my fistula so in the future I can use blunt needles and avoid all that horrible infiltration because my arm is tricky. This was the suggested method to avoid 12 needle stick per week as I went to the daily dialysis regime. It seemed like a good idea until there was a small clot today and the needle had to be withdrawn and reinserted into the same place. Trust me... that hurts like you cannot imagine. And you know how I love needles.

However, the NxStage machine is working well and I am looking forward to being at home where I can regain at least some of the control again. This was redoubled when I walked into the regular area today only to wave at Nurse Norma and wish her a happy birthday. She is 50 today. I swear my least favorite nurse was seriously trying to bore holes in my hide with her glare. Sandy noticed it too. Oh yeah.. back in the clinic tomorrow is going to be so fun.

If this blog entry seems negative you are correct. It has been a long week. So many people with so little clue have been assailing me the entire time. It is a bad idea to be the first person on something new. I find that while I love new things most people loathe change and are slow to adapt. I have no idea how humanity ever gets anywhere anymore. That 5% that is recognized as creating new ideas must be overworked and very tired by now.

I personally wish to thank them because that group of motivated thinkers has shaved an hour off my time, caused my BP meds to be cut, caused my binders to be cut, caused my need for potassium foods to increase(!) and eased my fluid restrictions... all in the first week. Clearly daily dialysis is a winner. In this case more *is* better.

It is very clear to me that in the future daily dialysis will be the accepted norm for kidney care after they crash. It gives you back so much of what you missed in the first place. And ironically they could do it in center too. There is no real difference in the process. In fact the big machines on the floor could run non-stop all day and be very economical. I was actually able to shave 15 pounds off my weight because I could take a little more fluid each day instead of having so much build up. I think that alone could do wonders for most patients.

So we shall see... only time will provide the full story. According to the NxStage people I am the first person in East Tennessee to use the machine. And I can tell... being the "demo" person is a rough ride at times.

9:04 PM 6/7/2006
I must admit that I was very skeptical of all the claims being made regarding daily dialysis. Everything from less need for all the pills to less shots to paeace and happiness on Earth. This is only my second day on the NxStage machine but it is my 3rd day in a row of dialysis. I also went to the clinic last Saturday so I have only missed Sunday so far.

Without gushing too much let me say that the claims are true. Today went well without a single trouble. I was only 1.4 kilos over yesterday's walk-out weight so we took off 2.3 in an effort to bring me down closer to dry weight. Even so I had no troubles and indeed it was a grand day. The only issue of any concern was my EpoGen shot which I had to have in the arm instead of in the lines. Even that was only a minor pain.

Since I almost passed out last night and totally crashed into bed due to blood pressure issues the doctor cut my BP medicines in half today. There was also the instruction to monitor my BP and only take said pills if needed. This is totally amazing because I have had rampant blood pressure for many years. Suddenly due to daily dialysis I seem to be fine. My EpoGen was also reduced and they changed my Hectorol to a pill.

Despite all the pill reductions I feel great and am happier than I have been in 9 months. It is almost like a dream due to the changes. I look forward to going to the clinic and almost cannot wait to clean my blood again. I cannot even imagine how wonderful it will be to do this at home so I can shift into the evening hours. I see my life coming back again and barring any troubles... I thnk it is really going to happen.

At this point I have to send out wonderful thoughts to Nurse Sandy who has given me nothing but heartache and pain. Her incompetence drove me to do the home training despite my initial reluctance to do so. I did not want that much of the disease and it's issues in my home life. I thought it would be better that way. But her total inability to do her job well and her trailer park trash attitude was the last straw. I now see that she did me a favor in a strange way because I now feel better than I have in so long. I guess in the end the best revenge is truly to live well.

I also cannot speak highly enough of the NxStage machine and it's people. It is simple, compact and easy to use. The company is innovative and really has something going here. Their dedication to daily dialysis is certainly changing lives. I think it will only take a couple of weeks to learn all the tricks and they still have that 24 hour line going for help. Easy function, easy cleanup, easy storage.

I am suddenly thinking of the future in new ways. My bone and joint pain is reduced and I am getting around better. Ironically I am dealing with issues of being light headed because I am not used to being normal in my blood pressure. My appetite has balanced out and many of the nausea issues have simply gone away. I thought I was doing well in the clinic environment on the 3 day schedule, but I was wrong. I was actually slipping away so very slowly. I think it will not be long until even the clinics have to see the truth and go to shorter sessions 6 or even 7 days a week. I know there are many people working on the Medicare system to get them to pay for the extra treatments.

Personally I think the Medicare system is deeply flawed. Why pay tens of thousands of dollars to keep people alive but barely functional when only a couple thousand more would return them to functional and productive life? Talk about penny wise and pound foolish. Then I watch the news and see the President worried over gay marriage instead of more important issues and I wonder who is running the country?

Again I must wonder over the amazing advancements humans could make if we could just let go of all the irrational things we spend mental energy on. It is not hard to see that some real forward movement would be so simple if we all agreed that life is a good thing. As it is humanity grinds forward in spite of the religious and social nuts. It is the men of mind that advance life.. not the people in some fantasy dream land.

I look forward to the rest of the week. Tommorrow I am back to the clinic again, same for Friday and then out on the regular floor for Saturday because the home nurses have the weekend off. Sad, but understandable. 6 days a week for them is 6 days, all day instead of my few hours. I doubt it will be much of an issue. These days anything I can do to dialyze more is a good thing as far as I am concerned.

How funny to be feeling and writing that!

4:20 PM 6/6/2006
Today was my first session on the NxStage home dialysis machine. Sandy and I got to the clinic at 7 a.m. and weighed in. I mention this because the real magic here is the 6 day a week dialysis process. As I weighed in I had only gained a couple of kilos. There is not enough time in-between sessions to overload on fluid or nutrients that one cannot handle. So needless to say I was feeling great before we even started.

The machine itself is politely quiet. Even the alarms are pleasing. Quite a change from the startling scream of the bigger Braun machines. It sits on a small cart beside the chair and plugs into a standard outlet. There is an IV pole on the unit that holds the large sacks of fluid. Instead of needing water line hookups the NxStage simply feeds from these large sacks of special fluid. There is also a sack of the standard saline to use in priming the machine.

Startup time is 18 minutes while the machine checks and rechecks itself. During this time Nurse Karen did the normal sticking of the fistula and prep work one associstes with being on dialysis. Once the machine is ready you hookup and off you go. She got a very good stick on me today so I was able to run at 400 blood flow as opposed to my normal 350. We took some blood pressure and heartrate readings and off we went.

The truth is that the rest of my session was like watching paint dry. I had no troubles, no BP dropouts, no nothing! The machine hummed along flawlessly and did not even alarm until I was done. In my case I ran for 3 hours and 15 minutes total. The time of the session varies a little based on the amount of fluid removed. We took off 3 kilos today because I have been trying to get down closer to dry weight. The nice part is that over the next few days I will be able to remove all fluid I take it with little difficulty.

I had a great session with none of the normal fatigue and "blown away" feeling that I generally have. The NxStage machine takes off all the fluid first and then proceeds to clean your blood second. This seems like a good system and was the most gentle dialysis session I think I have ever had. What little fatigue I did experince was more about my BP meds than the machine. So much so they asked me to skip them tommorrow. I felt bright and perky the entire time. I can easily see how one might read or use a computer or whatever while on the machine now.

The real delight was after I got off the machine. Once done all the tubes and workings simply pull out and get tossed in the trash. You wipe the machine off with a bleach cloth and you are done. I also immediatleley noticed that I felt great, more like an off day that a dialysis day. I was happy, cheery, and even noted that my feet did not hurt as much as usual. And this was only my first session!

Once home my daughter noted right away that I was like I used to be.. alive and animated. I did take a small nap after I got home but again I think it was more about the BP meds because it made my eyes burn like they often do. For the first time in many months I prepared my own lunch with energy and moved about like a man with purpose. I have to admit it all seems to good to be true.

Now.. the negatives. Biggest negative is that all the medicines in shot form are now going to go into my right arm instead of the dialysis lines. I would assume blood tests will be equally primitive coming from said arm again. To me this is a big negative. The irony is that Medicare has rules against giving medicines in IV form at home. There is no logical reason for this... they just demand it. I often tire of the Medicare rules. They are a never ending source of actual physical pain to me.

The second negative is that one must house the machine and store all the bags of fluid. This is a small negative and really no different than some of the other methods of dialysis available that use bags of fluid. The drain line is replaceable and they send you a whole box... one for each week. Too easy.

I cannot decide if the simplified control panel is a positive or a negative. Being a technical person I like all the information available on the Braun machines, but for the average home user I think the NxStage control panel is really a positive. The NxStage rep showed us all the ports on the back of the machine. 2 USB ports, one phone jack and an Ethernet connection. I suspect in the future there will be many advancements in terms of control and data reporting. NxStage already has a system where the machine calls "home" each night and reports the stats of your sessions. They then have a 24/7 help line where you can get assistance regarding the machine and problems you might have and they are using your actual data as you speak with them. Too cool.

I am sure in the future the Ethernet connection will provide even more advanced monitoring perhaps even with doctors or nurses being able to see your session in real time. It was a stroke of genius to put all those ports on the machine now. I see a whole market of add-ons coming because of it.

I don't have anything to compare this machine to except the bigger Braun machines in my clinic. Honestly for home use as well as travel I think it is far superior. Suddenly I see my future holding the possibility of trips that last more that 2 days. One could go on regular cruises or regular flights. In my case I think of the thing in the back of the SUV and away we go. One would simply need to take the right number of fluid bags for the number of sessions you wanted to do.

I was also encouraged by the calm attitude of the NxStage rep and nurse. This is a company that wants to grow slowly and properly. They are concerned with making money, but they want to do it with happy customers over the long haul. Clinics will have lease agreements for the machines and hospitals will simply purchase them. This keeps the costs down for the clinics and allows for overnight replacement should a machine break down. Again because of size one can ship a NxStage unit with no trouble at all. It does not even exceed the weight limit for a UPS package!

Personally I am excited. I see my life coming back all of a sudden. I see the possibility of feeling normal again without all the long weekends. I see my diet returning more to normal because I remove the toxins more often. I think this machine is going to change my life. I think this machine is going to change a lot of lives. It is easy to see how people could use this device to adapt their dialysis to their lives instead of trying to get life to mold around the dialysis clinic. I think the clinic has its place but they simply cannot be as flexible as an individual.

I often rant on and on about men and women of mind. Today I saw and experinced the power of rational minds. I saw a solution to a problem most people don't even see yet. There was no vagueness, no emotion, no begging or sacrifice. There was only a solid piece of reality designed by intelligent minds. I wish I could meet the men and women that built this machine. I wish I could thank them for what they have done. I hope that they become so wealthy they can purchase anything they desire. I think that would be a great trade for the expression of mind that I saw today.

I can only hope that before my life ends I can create something that solves a problem as well as the NxStage machine does. As a form of tribute to these minds I am going to try to purchase stock in the company. That will be my way of saying "good job" and "thank you".

8:21 PM 6/5/2006
I went to the clinic today to dialyze as I was supposed to do. I went earlier than I expected because they called and told me someone had cancelled for the day. I got that person's chair. This happens sometimes because people go to the hospital or skip days for important functions. It was very odd to be there on a Monday... I did not know a single person there since I have never been on the M/W/F schedule. Everything went pretty well however although I thought I would freeze. The chair I was in has a vent above it and I am not used to that since I normally sit in the corner.

I spent most of my time simply looking around and thinking. Some of my time was spent snoozing of course, but mostly I sat and reflected. It has been about 9 months now since I first sat in the chair in that room. And if all goes well this was my last day to do so. Tomorrow I will be starting the home dialysis training on the new NxStage machine (http://www.nxstage.com ). I took a few minutes today to stop in and look at it. My nurses were training on it today so they can use it on me tomorrow.

It is smaller than one expects. I was reminded more of a boom box than anything else. Perhaps 1.5 feet square? Big black handle that reassures you one can tote it along with you. The drain line was simply a thin plastic tube much line one finds on an aquarium tank. Rather long though... about 30 feet they said so you can drain to almost anywhere. The control panel looked like something out of Star Trek. The unit was not on so I will have to wait until tommorow to see it work. Pretty amazing.

I did discuss the matter of 12 needle sticks per week with the NxStage represenative and she said that perhaps a buttonhole method might work better on my fistula. It is a good fistula but there are some curves and thinner spots that will limit the usage. In normal function no problem, but with 12 holes a week... I think I just ran short of needle sites. I must admit it will be interesting to dialyze 6 days a week but for less time. They think 2.5 to 3 hours for me because I am very tall. Body mass and being male increases dialysis time. More muscles they tell me.

But today I just sat there thinking... and occasionally shivering. So much has happened in the last year. I went from almost dead to where I am now. I am not exactly sure where that is yet.. but here I am. I guess the events of the last few days as I close one chapter of my life have me thinking and reflecting. Soon I will be home again all the time save the occasional doctor visit. I should regain much of the time that is often wasted at the clinic. Perhaps not wasted really since it continues my life but hard to use for much else. I know.. I am so impatient. But 4.5 hours is a long time to just sit and do nothing.

I know the comments in the PKD list have affected me quite a bit for sure. I thought much about that today. I am still not sure how what I said got so twisted so fast. I guess people simply see or hear what they want to see or hear... and then unload whatever issues they have. I considered responding or trying to correct the impressions they had of me. Honestly after serious consideration what I did tonight was just leave the list. I find that I have no desire to spend more of my valuable time trying to speak to people that are living in a world of their own making. It was very clear from the many messages that my input is really not desired or needed.

So I decided to simply "hide". Oh not in the normal sense of the word.. not out of fear or upset. No, I simply do not wish to be seen or heard from any more. I write this blog, but I doubt many read it. And my other contacts with the world will be smaller and less too. It has become so plain that my philosophy and my mind no longer belong in the world at large. I have had similair experinces at the clinic and other places too. Too many voices of irrationality have spoken for too long in the world for me to change anything. So... tonight... I have decided to stop.

I will live my life and do my own thing. I honestly don't care about most people anyway since they have no value to me most of the time. It is easy to find the ones that do have value to me.. I generally hand them money for some service in life. All the rest seem to merely want my attention with little in return. This has been quite a surprise to me... I always thought I was being too harsh on people, but I see now that I was not nearly harsh enough.

I won't attack people or demand they change. That is quite foolish. I will simply not be there or have anything to do with them anymore. I think that I will be so much happier that way. Anymore even though I have changed quite a bit in my life I find that the majority of people seem to want something from me that they have not earned. Since this arrangement does nothing for me I will simply cease to play along.

I was accused in a message today of being the most selfish person around ( which is correct ) and therefore there was no way I could ever begin to understand the ways and methods of the true Altruists in this world. I guess the implication was that I am far too evil and selfish to see the good and the light of altruism. This however is not true. For the first time in my life I see the altruists and their creed in full illumination. I understand every nuance of the twisted words they speak. I know what they desire and I know why too.

I see you!

A parasite needs a host, but the reverse is not true. What they desire most is the one thing I can deny them: my sanction. They cannot make their inverted reality work unless people like me agree with it or sanction it. Henceforth I withdraw my sanction and my mind. I will no longer help the parasites to feel good about destroying me. I will no longer offer them my help or my IQ just so they can have someone to attack. I will no longer smile and be polite when people do things to me that I disagree with. I will no longer tolerate the fantasy they shove at me hoping I will let them play a bit longer.

If you do not understand what altruism really is then I suggest a copy of any of Ayn Rand's books. I do. I see it. And I have never been to sick to my stomach in all my life. Darkness, corruption, hate and death do not even start to cover it. But I know the solution now. I have known it all along and not used it well enough. Let me share it with you so you too can use it. Some will not understand yet.. but many others will.

Here is the magic word to destroy all altruists and parasites: "No".

Use it well.. use it wisely.

10:20 PM 6/4/2006
Not surprisingly my post this morning brought a furious wrath of comments. Seems like anything I write anymore has that effect. Come to think of it... anything I say at all brings that response. I have rather come to expect it really.

I think it is very sad to read through comments online that seem to be more focused on attacking my use of words than the meaning of the statements. I made the fatal error of correctly using the word "selfish" which simply means self interested. Judging by the flurry of responses I would say the socialists and the churches have done an amazing job of changing the definition of that word to something very negative. I wish I could repost all the responses here but there were so many. In each of them I was condemned for suggesting that all the parties involved were "selfish" or acting in their own self interest. Far from being a negative this to me was simply a fact.

Alas, so many people have been brainwashed by the altruist teachings in our country that they no longer even know what self interest means and what a grand thing it is in truth. In our society being "selfish" is regarded as the worst crime one could commit.

I find this amazing since every person on the planet is and should be self interested. If one was not self interested then they would surely die in no time. Is it not self interested to eat? To drink? To protect and house oneself? To protect and care for the ones we love? All of the achievements of humanity have been "selfish" or self interested. Even when we "do things for others" we are serving our own best interests. To do otherwise would be an act of insanity.

My moral code is based on my life. It is my most valued possession. How could it be otherwise since it is the source of all that I am? I am rationally self interested or if you like selfish. I do things to further that life. To do unselfish things would mean that I neglect my own interests... my own life. When people stop being self interested to that degree we often as a society put them in someones care... so they do not die of neglect.

Clearly I have to start using different words as I speak and write. I think this is a sad commentary on the current IQ of the populace. Selfish is seen as a horrible negative. Gay means homosexual instead of happy. And the list goes on...

What happened to the minds of our people? Have the schools failed so badly that intelligent people must write in smaller words so people can perhaps understand? Or is the truth more dark? Perhaps it is that fact that men of evil, men that desire control have realized that if you hijack the meaning of enough words you can freeze the minds of people. Suddenly the classic book "1984" comes to mind.

Listen to the TV news media. They do it too... all the time. Words are "spun" to mean new things. Concepts are detached from reality so they can be redefined. There is a strong undercurrent in the world today and that undercurrent is trying to wipe away all the words we need to speak about being free and individual. It is trying so very hard to convince us that we are all small and unimportant and that any thing done in the name of the group is just okay.

I find that when mobs speak it is rarely okay. Democracy is so cool when you are the 51%, but not so amusing when you are the 49%. And if the group or mob suddenly decides there is no more room for words like selfish and the people that use them... then what happens? It is not a fun thing to comtemplate to its conclusion.

But of course that is the idea. We are not supposed to question or think anymore. We are supposed to just follow and obey. I know this because my President says it all the time. He expects just like all the religious leaders that we the people will simply go numb and obey his wishes. And he gets so very angry when we do not.

What does this have to do with my being selfish? Quite a bit really. I am selfish in the true form of the word. I am proudly self interested. And when my society no longer sees that as a positive thing then we are all in trouble. I feel very sorry for the people that commented negatively on my earlier post. They all missed what I said and instead attacked me or my words because it scared them. I was not going along with the mob... I was not in favor of blind giving no matter what the cost to me.

And there it is... the real issue. People want me and you to be unselfish because that is how they get what they need. Look around you and think about how many people are living well on your "unselfish giving". How many of them deserve it? How many of them are living better than you in many cases? Are you getting what you want and need in life? Or does it always seem like you are left out?

Defining selfish as evil and negative is a great way to squeeze resources out of people that would normally tell you to get your own. It makes for massive guilt when we do for ourselves with the money or things we earned. It gives the moochers the chance to get what they need to live without force... because they guilt you into giving it to them. And for so long people have done this to great effect.

I am selfish. I am proud of it. I do things for myself that I enjoy. When I do things for others I do it because there is a benefit to me. I have never acted in any other manner and I never will. If I do get a transplant someday I will be very vocal about the fact that I did it because I wanted to live. I will never apologize for my selfish or self interested behavior. Unlike so many others in America today I am not ashamed to live my life and I don't owe anyone anything for it. I made my choices and I live by them.

7:27 AM 6/4/2006
Well... I thought yesterday was my last day in the regular hemo-dialysis unit. I was to start home training on the new NxStage machine next Tuesday after my normal weekend. However, as luck would have it, the nurse I had yesterday was Nurse Karen who does some of the home training as well and we discussed the coming process. She was surprised that I was not going to dialyze on Monday too so that I could get the benefit of the 6 day a week process.

That day as I understand it was just for the nurses to read up on and get trained themselves on the new machine. Nurse Karen decided to make some calls after I went home on Saturday and suddenly I am re-scheduled into an open position on Monday! As best I can figure they talked it over with the doctor and decided to clean me up after my weekend before the efforts on the new machine. Honestly, while I am annoyed at the late decisions, I can certainly understand the idea. Nobody wants to try something totally new with me overloaded from the long weekend. I have a feeling I am going to feel very "clean" by the end of this next week. I suspect also very tired.

This last week my administrator Mr. Williams also started seeking me out. I had never met him before but he seems like a nice enough man. However his reason for finding me was to talk money. Hmm.. a little late in the game I think for that discussion. Now we have to fill out a ton of paper work and make all the bean counters happy that I am totally broke. I dislike this part because they go by household income. They barely consider all the bills and think all patients should be poverty stricken. I have no job but that matters not since Sandy still works. Never mind the fact that she is barely able to keep the lights on... she still makes too much money.

I have no idea who decided that only the poverty crushed could get some help. Seems like one would want to help people if they were going to do so *before* they hit the gutter. I personally think the entire entitlement system is wrong but I have no option if I wish to stay alive. The clinic will not treat me if I don't apply for government aid. And I sure cannot afford $25,000 a month that they charge the paying customers. I have often commented that it is strange how Medicare only has to pay $14,000 for the same treatments. Clearly the entitlement system of America is making someone very wealthy. Guess who?

However, after all the foolishness of the last minute I start the home training on Tuesday. That will be my first exposure to the new NxStage machine. I am somewhat excited to see how it works. My reservations are in the fact I will gain that knowledge by having needles inserted into my arm and testing personally. Seems I am to be the demo. Oh well.. what is the good of being biologically dead if you cannot risk a little? I will continue to post my experiences here as I go along.

On another note: I belong to a group online that discusses PKD. The link is PKDCARE@yahoogroups.com if you too wish to join. It is a good discussion and support group for those of us with PKD. I like it because it often discusses issues that other people with kidney failure do not have. Most people with kidney failure also have diabetes which I do not have.

Today in the group somebody posted an interesting link to a story on CNN about people in a religious group donating kidneys to strangers. Here is the link:


And here is the message I posted to the group:

Greetings, This is not an unexpected situation. If one follows the altruist moral code to its logical conclusion then giving up parts of ones body is quite normal. The truth is that very few people are irrational enough to actually follow the code to final conclusion. 99% of altruists cheat to live because you cannot live in this world if you follow it 100%. If you listen to the religious leaders and ironically the socialist leaders this practice is very much demanded by them. I would expect that individuals who follow this moral code would continue to donate parts until they were unable to give anything else. Perhaps even until they were dead.

The really scary part of all this is that nobody involved is actually doing something for someone else. The donor is doing it to fulfill their own code and earn spiritual points. Very selfish. The hospitals and doctors involved are doing it because transplanting makes big profits. Very selfish. The patients getting the organs are doing it because they need a kidney to continue living. Correctly the most selfish motive of all.

As a rationally selfish person I find all the lying about motives the worst part. Honestly all these people need to admit their motives and stop pretending. As a person with failed kidneys it all strikes me as rather ghoulish. Borrowing "used" parts is bad enough if the person is dead and no longer using them, but to possibly condemn another person to kidney failure years later when they might have problems because they only have a single kidney left is an act of selfishness even I am not capable of... and I am the most selfish person I know.

Jim Cales - jim@jimcales.com Powell, Tennessee USA 37849-3749 http://www.JimCales.com phone - (615)261-0696

I am sure I will get all manner of flack because people love to get upset about my philosophy often ignoring the bigger issues being discussed. This article is really interesting because right now I am re-reading the "Virtue of Selfishness" by Ayn Rand. If you have not read the book I highly recommend it. It is really a discussion of ethics and points out many aspects of the altruist moral code that most people don't realize. The biggest one, reflected by said CNN article, is that they expect you to sacrifice as much as possible including your own body. If you die.. oh well.. you had great virtue before you died, right?

I think times like this make me the happiest because I am a rational thinker. I would happily give a part of me to someone I loved or cared for deeply. But to think of giving something so valuable to a total stranger... my goodness. That level of unconditional love is appalling. People never stop to consider how truely selfish all this "sacrifice" really is in fact. They always do it for the rush of how they feel. There is no such thing as sacrifice if you really think about the meaning of the word. Sacrifice means to trade a greater value for a lesser one. That is impossible if you get some grand feeling out of the deal or if you earn spiritual points or at least think you do.

I can honestly say with full knowledge that I have never sacrificed anything in my entire life. Not once. Everything I did I did because I got something better in return. That is just how humans work. All this altruistic philosophy is just smoke and mirrors. It is not possible and we see the devastation all around us as people try so hard to make it happen. On a social level the entire Soviet Union collapsed. On a religious level we see people giving away body parts and trashing their own happy lives to try to comply. This warped philosophy simply does not work.

In the end I think America will have to ruin itself before we learn that lesson. I see the signs all around me even now.. we are heading down. How much more to we have to give away to other nations and other people with no regard for ourselves before we finally see that giving to the lesser just makes us all pathetic? In grade school they called it the "lowest common denominator". And the truth is we should be going the other way. Humanity did not get where we are by seeking the lowest and most pathetic. We achieved what we have by reaching for the heavens.

If mankind continues to beleive that greatness is in honoring the sores of men then we are all doomed. In the end I think we will return to the swamp from which we came. Perhaps that is the real goal of the altruists? Perhaps they are so full of self hatred they simply want to kill us all. If you study their creed... you quickly realize it is one of death. Thanks... I will pass.

1:55 PM 5/31/2006
One day down and only two more to go. Naturally, of course, I am speaking of dialysis sessions until I start the home training sessions. Only Thursday and Saturday to go and then I will be in a different part of the clinic and on the new NxStage machine.

I must admit that I have some conflicts on the matter but the retention of my least favorite nurse as an employee in the clinic has pushed me towards home dialysis. I thought surely by now that the nurse manager would be sick of her blunders and have fired her. Not so. In fact as I expected in alternative "B" she has been slowly allowed to start dealing with me again. She is not sticking me but I noticed she is now taking me off the machine and dealing with me during the day. Considering her incompetence and the comments of the other nurses even this small level of interaction concerns me.

However in two sessions I will not have to see her again. I noticed on Tuesday the head nurse showing around two more trainees... a couple of young nurses again. I realize there needs to be an addition to the working staff, but it is really scary to wonder when the new ones are going to get assigned to you. I don't know if there is a training issue or if these new nurses are just prone to being useless and stupid? Either way there is a problem.

I look forward to having Sandy be the only person sticking things in me. While I am sure she will screw up a couple of times, once she learns to do it right she will only be working on my arm and will never mess up again. That is a much better future than new nurses every month as the clinic adds to its staff. So far the "professional" staff have blow my fistula at least 6 times I can think of.

I had a lot of people asking me what I did over the Memorial Day weekend. I told them all the truth in that I did little or nothing. I stayed home and worked on my C programming. Sandy and I saw so many Tennessee police out on Friday and Saturday that we vowed to simply stay home for the rest of the time. Apparently people in Tennessee get even dumber on holidays where you can drink and loaf. They don't drive well under normal conditions and the added police presence signalled that they are worse on holidays.

My big thing was "what else could I do?". I cannot drink much water much less alcohol, I cannot handle the salt and other things in the BBQ often associated with this holiday and I could not deal with the potassium in all the fruit available either. Honestly for a guy on dialysis staying home was the lesser of all evils.

I have also noticed that I get so very hot so very quickly now. It is quite a change from all those years when I was so cold I wore long sleeves even in summer. It is truly amazing how my ability to deal with temperatures has changed over this process. Now I actually feel the heat and act like normal people. I even wear shorts and sandals which I never thought would ever happen. I even require a fan at night just to move the air a bit because I feel so stuffy all the time. In fact I have placed a fan in every room in the house now to help circulate air. Even here by the computers in a room that generally was rather cool.

On a personal note... can you do that in a blog that is 100% personal?... I have a pile of used computer books on my desk. It has been years since that occured. I rather like it. I have enjoyed moving back towards my programming efforts. The prospect of being a freelance programmer again is exciting to me. Ironically it has made my time at the clinic seem all the more boring. I simply desire to be home working instead of sitting there doing nothing. I still cannot beleive that a modern clinic with hundreds of thousands of dollars in high tech machines cannot install a WiFi unit. The act down there like a computer is a magic box. You cannot imagine the comments I hear about the one at the nurse station. People really need to catch up with the technology around us.

Speaking of that aspect... while researching my programming and trying to decide where to jump in again I realized almost nothing has changed over the last three years. I have books on my desk that are almost the same as three years back. I have noticed this situation in the stores too... there is almost no change. Nothing really "new" or amazing has hit the market of late. Things like hard drives have gotten bigger and the iPod is new, but nothing staggering in terms of advancements. Nothing to make a person go "Wow!" at all.

This process of slowing and making cheaper and spreading across the consumer base is normal for other items likes TV's but I had not seen it happen in computers. Computers used to move so fast it was hard to buy anything before the technology was totally obsolete. Now things have slowed down quite a bit. Honestly I was overjoyed along with my concern because it was an opening for me to catch up. First break in my life in over a year. It is interesting however in terms of the overall implications. I will have to watch this situation and see what happens as the years wears on. At this point I can only expect the Christmas season to be boring although the prices will be much better than ever. Hmm.. I wonder what the next "big thing" will be... interesting.

And on that note I must program. I have a lot to learn and nine books to read. It is nice to have purpose again. I was lost for so long. And I know my life will never be the same again. But perhaps I can take back just a few things. I would like that.

2:47 PM 5/26/2006
Here it is Friday again... my goodness. I just awoke from a nap. A blood pressure pill induced nap I must add. It happens the same way each day. I take my BP pills around 6:30 or 7 a.m. each day and again in the eveing about that time and 2 to 3 hours later I am snoring. The nap lasts 2 to 3 hours and I am okay again.

I speak of this today because it seems like fatigue and resting controls my life. It is sometimes even hard to tell what day it is because I have several "mini-days" due to all the resting. Thankfully the second dose of pills happens in the night so I only loose time once in the day. I think I would be really psychotic if I did this twice a day.

I am always amazed at the people with renal failure that seem to live and function just fine even while on dialysis. I have no idea how they achieve this because in my world there is simply too much fatigue. I know some of them do okay because they are diabetic instead of PKD patients and that does not always come with the staggering high blood pressure that PKD patients have to deal with. I realize they have their own issues but not as much BP trouble.

Add on top of this issue the pain medicines I take and it is a wonder I function at all. I try to take as little as I can for just that reason but it is a fine balance between hurting and being a space cadet. It has been a real challenge in terms of doing simple things like driving. I would feel uncomfortable driving all loaded up on pills yet I have tried to drive without any so I was lucid... and the pain was unbearable. And as you can imagine using power tools in the shop is a bit concerning as well. Pain pills and power tools is a bad combo. Just like pain pills and driving makes for CNN stories about the old woman that ran over 10 people on a sidewalk.

Ironically on dialysis days that same thing happens but I simply dose off in the chair for a time. While this seems like a good safe thing to do, and it is, there is the problem of trying to read or write and make use of the time there. No can do when you are nodding off and drooling on yourself. I can see it now.. if I get a laptop I will be writing along and suddenly be snoring and drooling on the keyboard. Oh yeah.. my dignity is just fine.

We seem to have a problem in America today in that almost all the medicines and remedies that doctors hand out are either making you tired or nauseated. I find it odd that we cannot develop solutions to illness that skip these side effects. Of course even better would be some solutions like prevention. I know that I spent many years not knowing that the first symptom of renal failure was your feet start to hurt. Come to find out this is a very common effect and also 99% of people loose kidney function as they age even without something like PKD. Yet the changes in diet that would solve most of this issue are ignored by the government and the AMA too.

We can market pills to the tune of a billion a year in advertising but not a soul wants to advertise against foods that make you ill later on. People blame capitalism for this but I assure you no real capitalist would want to sell death to make money. This is simply another version of reality evasion only this time it is being used to prevent some foul person from knowing his products are inferior. I think of the tobacco folks in this light. They know better and yet they still lie to the world. I don't mind them selling deadly things.. that's fine... just stop lying to me about them.

I think the same thing of many industries. It is the level of fraud not the item itself that offends me. Tell me the truth just once and let me decide. Naturally the whole point of fraud is to make sure that someone cannot get the real picture on reality. This occurs in business, the home, politics, online chat, the supermarket and even schools. It is all about control these days because we all know that even the simplest mind could shy away from trouble if give the truth.

Which brings me back to all things medical. I am amazed at how often the truth is simply hidden from me. I find out later on but then it is too late. It is hard to imagine the level of fraud involved in medical situations. I find it in the pills and I find it in the billing procedures and I often find it even in the words spoken to me trying to get me to ignore pain or some serious side effect. For shame AMA.. for shame!

Shading reality or even flipping it via fraud or lying is harmful. We all know it yet there seems to be a world wide practice of doing it anyway and I think that is sad. How interesting it would be if there was no way to lie for a day. I am reminded of the Jim Carrey movie "Lair, liar". I wonder how many businesses and governments and even relationships would still be there in 24 hours if that happened? I suspect not many.

I challenge you in your life to try not lying for a day. It is an interesting educational experince. Even if you have to lie I want you to mentally consider the truth in your head. Think about the outcome if you had spoken the truth. Consider your world and ask if this is the way you really wanted to live when you were little? Or is this the worst hell you can imagine? I suspect it will be interesting either way.

8:47 PM 5/23/2006
Today was not quite as I had expected. That is one thing you can count on with Polycystic Kidneys... each day will be unique and interesting.

This morning when I awoke I was in considerable pain. My kidneys felt like I had been kicked roughly and my chest was tight. Once my heart rate settled a bit I was able to get up and out of the bed. Alas, there was little relief once I was up and around. In fact then the nausea set in.

For a time I seriously considered going to the ER, but instead called my clinic and asked if I could do dialysis sooner rather than later. They were most accomodating and by 8 a.m. I was in the chair and going. My goal was to see if I was simply overloaded from the weekend. Ironically I had only gained 3.8 kilos which is great for me on a weekend. I can only assume that my PKD has changed something in there and I am feeling the changes.

So I did a full session of dialysis, came home, ate, rested and here I am. Still pretty sore and feeling weak, but not much else. I guess later this week I will need to get scanned in some manner to see if the cysts have gotten larger or more of them. It certainly can change your mood in a hurry.. my goodness! I just wish nausea was not the constant companion of PKD. One sure gets tired of that feeling.

As I write this I am installing Microsoft's Visual C++ 2005 Express Edition. I located it yesterday in my search for what the current programming tools are these days. They also have Visual Basic for free as well so if you know an aspiring computer programmer you might point them towards Microsoft. While I understand this is just the "first one free" in terms of purchasing the entire package, I am still grateful because it allows me to begin where I am with limited cash flow. I remember the beginning of computer programming so the downloading of 1.9 GB of free tools to create awesome programs is really something.

There are few examples of capitalism like Microsoft. No matter how you feel about Mr. Gates one has to admit his efforts have changed the world. He has charged a lot for his tools, but when one looks at the possibilities created by those tools the price seems small.

Some have commented that he has a monopoly and crushes smaller companies. This is not true and one simply looks to Linux to see proof. It might be hard to compete against Microsoft, but it can be done and is done all the time. Personally I am grateful they exist because of the wonderful things they help to create in my world. I am very fortunate to have lived in the same time frame as the birth and growth of the personal computer. I would love to be alive in 500 years to see how it all turns out.

Today's entry will be fairly short. I am afraid the fatigue of the PKD is strong today. (Luke.. I am your father! ) I do so love a cheesy Star Wars reference. Hopefully tomorrow will be an easier day.

10:18 PM 5/22/2006
Monday is a conflicted day for me. I love the fact that I am not on the machine. On the other hand I can certainly feel the fluid and toxin build-up. I am reminded of a water balloon with a headache. By noon tomorrow it will pass and all will be well again but it is tough for the 12 hours beforehand. It is unfortunate that due to the number of days in a week dialysis patients have to skip an extra day. I think life would be better if we could go in every other day no matter what. Ironically most people would gripe about it all. It makes me wonder at the reaction once things change and we all start doing a couple hours each day. I think once the NxStage machine becomes popular that will be the case.

As is so often the case in medicine the treatment has more to do with cost and staffing issues than with health for the patients. All the research shows that daily dialysis is better and more effective but Medicare will be very slow I am sure in changing.

I personally think it is a crime that one has to be on Medicare to pay for all this. $20,000 a month for the dialysis service is just plain nuts. So much for being our brothers keeper. The patient suffers, the tax payers get ripped off and the only ones coming out well are the medical facilities. Yet another example where personal responsibility would be a better solution than a collective one.

Speaking of personal responsibility... after some serious consideration of my life and physical abilities I have decided to pursue computer programming once again. There was a time when such things were my passion but I was never able to focus long enough to do much. I see now that it was my PKD affecting me in terms of mental chaos and I did not know it. With that in mind I am going to start over and hopefully produce some useful Windows programs. Perhaps I will even crank out a game or two. Technology has changed somewhat but not so much that I feel lost. I think a few weeks of reading and practice will bring me back to speed.

It was a difficult decision to make, but I could see that my feet and knees were not going to improve anytime soon. As an Objectivist productive work and independence is more important to me than most everything else. This appears to be a way for me to once again be productive doing something I love. In fact.. once upon a time I loved it so much I rarely slept. I don't think I wil be able to do the house calls and repairs I used to do, but I can compenstate by using my mind to build better utilites and such.

Years ago I used to joke about never giving up as long as I had my hands and my mind. Little did I know as I made that comment that my current situation would be so real and so soon. Time to put my words into action.

Although it has not even been a year yet since I was diagnosed I feel as if a lifetime has passed. It is hard to regain balance when your entire life goes away. Honestly I am not sure if one ever does really, but perhaps I can regain some of it. The hardest part is that one clings to objects of the old life and wants so badly to be whole again. Eventually you realize something has to go and you let go of some of it. It has been emotionally trying for me. I do not want to let go of my old life. It does not seem right that I have to loose so much because of a decision my parents made so long ago. However, reality is my master and like it or not I must find balance within the rules of reality.

I can only hope that some day I am successful to some degree and can turn down the offer to do one of those horrible articles about how I overcame so much and how all the rest of the sick people should just get up and get going. I truly hate those things right now. They make me feel pathetic and lame when I read them. Getting back up is a fantastic strain and one should never assume everyone can do the same thing in the same way. Right now I have no idea if my plans will go anywhere or not. One can only try.

On a personal note: I have received some, shall we say, less than intelligent comments regarding my blog entries. While there is a capacity for making comments and making replies here might I suggest that if you don't care for what I write there are millions of other blogs to read. Let me also say that I do not apologize for who I am and it is very unlikely that I will change my mind or opinions after 43 years of life... and a little death. Overall I no longer argue such things because it bores me. Enough said.

Now I just need to find an inexpensive laptop to take with me to the clinic. It really is a pity they have no network access there. 4.5 hours of computer time is a really valuable thing. I would love to use my time for that. Probably time to stalk the garage sales and eBay auctions looking for something I can afford. I regret now selling all my older machines. I could have ripped them down and installed it all in a briefcase. Odd looking but it would have been useful.

If I can sell enough stuff I might be able to purchase one at Sam's. They have some that are simply fantastic. Small. light and unreal screens. This is one time I actually would not mind getting a check from the government even if it was mooched. Then again.. no. I just cannot feel good about stealing money from other people. I wonder how much lemonade I would have to sell? Hmm...

Speaking of money.. or refusal of it.. all of a sudden my neighbors have decided to mow my lawns. I didn't ask and they insisted passionately. It is a strange bind. We were managing although it was tough. Now they do it but refuse to accept money for their work. I am fully aware of the altruistic intent, but they don't seem to realize the emotional impact on me. Honestly I don't think they care really. They gain so much personal happiness from thinking they are helping me they don't stop to consider my feelings. There is a weird dynamic involved in the altruist process. They cannot do things for themselves without feeling guilt over being "selfish". So instead they do things for me that I may or may not need or want so they can feel good indirectly.

I think my way of being rationally self interested or selfish if you will is much better. Much cleaner and involves less people. I know I would certainly feel better if I could pay them for the work they do, but that would offend them. Perhaps I will give them a copy of the Virtue of Selfishness by Ms. Rand? Somehow I think that would offend them too. It is weird how people want to "help" me all of a sudden since I became ill. Beforehand I was the competition for air space, but now I am "needy" so I am of use. Let's see.. capitalist = nasty, selfish... broken, sick = needy to be served? So when I was trying to make money and be productive I was hated, but now that I am useless and non productive I am everybody's buddy?

And people wonder why I am cranky?

I notice too that all the "help" is doing things they want to do and not what I need. Not a long line of folks wanting to clean my bathroom. It is all such a farce. I cannot wait to be productive and making money again so I can stop being the charity case on the block. I think the new curse on people should be, "May you be terminally ill for a month so you can learn real tolerance". Honestly it is amazing what I tolerate these days.

8:05 PM 5/20/2006
Another nice day. I love it when the weather is warm and nice with just a little rain. It smells so very nice. It was one of those days where you want to go out and do something fun. Alas, I had a prior commitment with a blood pump. :-)

Yesterday I spent a great deal of the day in bed resting. I was not feeling ill by any means I was just overwhelmingly tired. I have not yet figured out why that happens to me on occasion but I think in time I will find the pattern. For now though I simply admit fatigue and go to bed. I always feel so much better once I get up rested.

I wish I had something really amazing to talk about today but in truth nothing happened. It was a beautiful day, I did dialysis without any issues at all, I came home and napped and Sandy and Amanda prepared a delightful Italian meal and served it to me on a tray.

Don't you love the days without drama? I know I do.

Days like this are what good living are all about. A person makes the best choices they can in life and sometimes it just all comes together really well. Oh sure.. I would love to be in perfect health again... who would not? But being stable and doing alright is pretty good.

So while there are problems in the world today... they are not mine. In the spirit of happiness and joy at being alive and feeling pretty good I am going to make this a very short entry. If you are feeling halfway decent then I reccommend you stop looking at this computer screeen and go do something you love with someone that matters to you. Have fun and tomorrow I will be back with all the moral indignation you have come to expect from my cranky self. :-)

7:54 PM 5/18/2006
Normally I do not make blog entries on the same day as dialysis. Most times I am totally wiped out and I simply rest after I get home. The rest of the evening is a total wash. Today for some reason things are different. I have felt fatigued but not so bad. Sandy and I went shopping for a table she wanted and I helped her load it. The only clue I have is that my nurse commented that someone mis-programmed my machine today so my sodium stayed even instead of being removed in a downward line. I do not fully understand this and need to ask more questions but the end result was that I did not drop my blood pressure. That always makes for a nice day.

I had a very brief conversation with the administrator of the clinic today. I was not sure of his purpose but he informed me that Medicare was not paying for the extra sessions on home dialysis and I don't have secondary insurance. I do not know if this means I cannot do the NxStage program or if it means I can only do it 3 times a week or if the administrator just likes to hear himself talk. I'll have to post comments on this aspect as it becomes real. Right now there is no information... only vague suggestions of something I cannot pin down. Bureacrats! Bleech!

So overall today was a fine day. I got to sit in a different position today so that was fun. I like to travel about the clinic... it makes the time pass better. New things, new people. My sessions have been going very well of late since Sandy called and made sure that my least favorite nurse no longer gets to play lawn darts on my fistula. My bruises are healing and things are going well. Ironically that nurse now ignores me and seethes hatred as she passes by my chair. I find this amusing. Her reaction is exactly the reason I loathe her in the first place. She is a total child.

Yesterday was a good day as well. Yesterday was significant in that it was the 21st anniversary of my first date with Sandy. Yes, we have known each other for 21 years. We did some things together and had a nice time. Neither one of us gets around well anymore so it was not nearly energetic as that day so many years ago. However in the true spirit of rememberance... there was a nice nap then and now. We're not getting old.. we're just conserving our energy for later.

One of the things we did yesterday was go to my doctor appointment with my primary doctor. He does not do much but all the other specialists demand that I have one. On this day though he provided us with the right signatures to get a handicapped parking placard so I can park in the special spaces in different places. I resisted getting one of these things for some time because I was resisting the idea of me not walking well again but things are not improved so I gave in. It was $20 and a doctors signature. Okay.. a small concession to the disease. I can deal.

It was amusing at Target because they have this huge parking lot. Got a nice space and hobbled inside. Things got uglier as the day went on. First we noticed that there were no spaces because they were all filled. Then while driving around we saw some people taking the spaces and lo and behold... they popped out and sprinted into the stores! What the #%%$&^? Perfectly fine people were using the handicapped spaces simply to grab a close space. There was not a thing wrong with them at all. I would assume they are the driver for a person with troubles and decided to steal a space anyway even though the proper person was not along for the ride.

First off... this is illegal. The placard goes with the person that needs it. There are even registration papers to that effect. But second and more important... how low can a human sink? Is there no point of depravity that humans will not drop to? Stealing a parking space from a guy that walks with a big stick to save 30 feet on a sunny day is just unreal.

There was also a christian fish symbol on the van but just because I am tired I will skip the obvious implications of this irony.

Simply unreal. I talked to my friends at the clinic today and they also told me stories of the same nature. Seems this is more than common in our area. I really was shocked. I know I should not be but I really was. What is next? A rash of stealing candy from kids and babies? How pathetic and lame do you have to be to steal a parking space from people without the ability to walk well?

As I said I should not be surprised. People have gotten so angry of late. It is really quite simple. They have been forces to sacrifice for so long for the "needy" that they are starting to push back in small and hateful ways. I see this when the ambulance tries to get past on the roads. People here will actually almost ignore it until it is sitting right behind them.

People are sick and tired of being the ones to pickup the slack for the needy and the poor. They are angry about it yet guilty because they actually beleive that they have to sacrifice like this. I am sure they think as they pull into the spot that they deserve it for all the things they do for the needy person in their lives. All the rest they blank out in a festival of reality evasion. I know this because I saw the woman later in the store and was going to tear into her... until I saw her eyes. They was nobody there. Glazed... blank.. call it what you will but there was no "self" in there.

And, of course, this is the real point. We live in an increasingly "selfless" society. It has been drummed into us for centuries to be this way. There is only one problem. A person with no self is a zombie. These people, and I know many, are so empty you cannot really even speak to them. Oh they work and function to some degree, but they cannot hold a conversation because all they have is feelings. No rational thought at all. Just emptiness where a "self" ought to be.

Me? I am selfish. Damn right. I do what is good for my self interest 24/7 thank you very much. I know who I am and I know what I want. And ironically people are afraid of me and really don't want to talk to me. Also ironically I have a superior moral code and I would never consider doing the rude and hateful and even violent things people do around me all the time. People call me an emotionless, soul-less atheistic heathen. They often tell me to my face that I am wrong, wrong, wrong!

I wish these same people could live my life for a few days and see themselves as I do acting in ways that I can not even imagine. If I am so wrong then we need more people like me because the people I see being "proper" are scaring the hell out of me. I have often said there is little I fear now since I have already been so close to death. I know what it is like. I have to amend that... people scare me. They really do. Their actions are frightening to any rational person that sees it. An goodness forbid they get together in a group or mob!

Think I am crazy? Watch CNN for a little each day. I guarantee if you look you will see how the people of the world are acting. And in ever greater numbers. If this is the philosophy of the last 1000 years I think it is time for a change. This one is not working.

6:47 AM 5/16/2006
There are some days when one awakes in the morning and the sensation is much like being returned to reality via a catapult. Generally for me this is Tuesday morning after my long weekend. The best word for it is shock. I am sure it is a result of the toxins that are building in my blood stream and I have no doubt I will feel much better by 3 pm this afternoon. Mostly it is agitated and angry dreams. Today I awoke and had the sensation of screaming in anger at people all night... mostly over dust bunnies on the floor. Hey, I never said toxin overload was logical. In fact most times it is down right strange.

It makes it hard, however, to deal with others and the real world for several hours. The purpose of this blog is to share experinces regarding dialysis and this is truly a large part of it: the moods. Most people have moods for the same biochemical reasons I do. Lots of things can affect your moods... foods... drinks.. TV.. people you meet...etc. But in the dialysis patient things can get pretty odd. We have that weird build-up of things most people dump out daily. Trust me... weird food is even worse when it stays for a couple of days.

It is truly hard to manage these moods at times when you deal with others that are normal. People are always so quick to inquire "How are you today?" in that cheery voice. 99% of them have no desire to actually know about me, in fact they only ask to be polite or more often to engage me in conversation to speak about themselves. As I have always maintained people are very selfish. I just wish they would be more real about it and see that it is alright as long as you admit it.

Anyhow.. can you imagine asking that question of me this morning? If I gave the real answer instead of the polite one you could be there for a time. "Yes, I feel like I was run over by a herd of wild yaks in heat on their way to the lower pastures. And I had to wrestle them for air to breathe. Now I want to kill a cat and 3 small children just to work off the stress. How are you?"

Yeah.. a real conversation starter there.

I wish it was all exageration really. In truth there are some days when my PKD really screws with my moods. I makes me sad or depressed without reason. Other days I am almost giddy. On the build-up days I am angry or shocky. And there is always that terrible sense of exhaustion to go with it all. I am amazed I manage to retain family and friends at all. I must admit to having fantasies about living alone in a small cave. Most of the time I deal, but kidney failure is odd because while I am sick in the normal sense... this will go on for years possibly.

A tough one to deal with because to look at me on the street you would never realize how close to dead I am on any given day. A week or so without treatment and I am toast. Most illnesses are not like that. You can tell people are not well if you see them. I often have people see me on webcam and comment how vibrant and healthy I look!? Maybe I need a better cam?

However my purpose in writing today was to give a glimpse of the mood swings involved in kidney failure. And there are a few extra due to the PKD as well. My congratulations to the people around me and other patients. They do a remarkable job in tolerating us and our insane variations of personality.

Now if you will excuse me... I have a date to get my blood sucked out and cleaned up a bit. I wanted to make a joke here about get my blood tended in the same manner as getting a hat blocked, but I leave that to you. My brain is too fried on the leftover toxins. Maybe later after I am clean and fresh again... say... was that a yak? Wonder if he wants to wrestle...

7:07 AM 5/15/2006
The last few days have been a blur in most respects. Here it is Monday again and I am a bit surprised. I have not been feeling too well over all and I think that has something to do with time changing speed. If you doubt me on this pay attention next time you have a cold or a fever. I assure you that time does pass differently when ill as opposed to healthy.

Well.. let's see... Tuesday and Thursday were dialysis days. I remember them as going well. Nurse Grouchy was no where in sight so that made things better. Ironic how a single person can foul so much space by themselves. Negativity is like a toxin. I have my days by I try very hard not to dump it on people that have no way to escape me.

Friday was pain management again. That has become about a ten minute appointment. I guess once you are in the system they don't concern over you as much. I took all my pain killers in a Ziploc bag to the nurse there. That seems to make them happy and I think it completes the image of the druggie personally. Drugs and Ziploc bags... who would have ever guessed. I could probably do an entire article on Ziploc bags. In the end they increased my Duragesic patches to every 48 hours. It seems it is quite normal for them to work less well as time passes.

Sandy and I also went shopping on Friday. Nothing amazing just some groceries but we had a good time. I recall that I wore out fast.

Saturday was a very concerning day. I was very unsure if Sandy's call on Monday would stick as the weekend crew showed up. I really did not want to go, but I had eaten too many tomatoes to skip the treatment. Death by tomato? Now there is a book title. I was more than relieved to see that I had been moved on Saturday and suddenly was across the room and away from the Nurse from Hell. I even had my favorite person Nurse Norma. There is hardly a way to describe the relief and sense of happiness that I felt once I realized I was going to be stuck well. Needles are a scary thing in the hands of the incompetent.

You know.. I just recalled that Tuesday the 9th was my 43rd birthday. Happy birthday to me. I must admit I was surprised to make it. Even more surprised to be sitting in the chair on that day. Yeah.. that's a weird feeling one remembers for a time. For most people birthdays are easy mental markers. Most people can remember where they were on those days. I wonder if my day falls on a dialysis day very often.. hmm.. have to look that up.

Sunday... yesterday... well.. okay I know it happened. I recall a lot of resting. I really have not been feeling well of late. My PKD has caused more pain of late and my kidneys feel swollen quite a bit. Oddly enough it seems to drain you of energy and make your knees feel weak. Oh yes.. and the nausea. Wow.. so much of that rude feeling. Never enough to actually be sick, but always enough to make you want to crawl in a hole and hide. I am sure some of it is my Sensipar since one hour after I take it here comes the yucky feeling.

I actually had to ask Amanda not to cook anything after I take that pill. Even the food smells can make me ill. I hated to ask it... I know she loves to cook things. She is very good at it too. If anyone ever doubts that PKD can alter the people around you... send them to me. This disease has altered and controlled my life for years. I only wish I had been more intelligent and seen the signs.

So here it is Monday morning again. Sandy is off to work early and I am here with my dog. He is smart... he is snoring. I wish I could say I was full of energy and motivation but the truth is that I am wiped out. People around me seem to think I should be able to do things and simply get on with my life. I would so love to do that. But the real truth is that I am so tired all the time. The fatigue of kidney failure is really hard to even describe. I try, but it always seems to fall short of reality.

Most days I feel like I could simply close my eyes and sleep for a week. It would not help, but the feeling is there. I think the worst part is the blood pressure medications. Those devils drop me in a heap exactly 3 hours after I take them. Not so bad in the evening but in the morning it is like a ticking clock. I know in a little while I will be so tired that my head will bounce off the desk if I am not careful. Alas... my BP is still high enough to need them. I probably should have been taking them many years ago as well.

The first sign of PKD is the high blood pressure. I wonder how different life would have been if I had understood? I wonder how different life would have been if the first round of BP pills had not made me so sick I decided that pills were worse than the problem? Talk about your life choices... wow!

I often talk about evasion of reality. And here I have to be honest and say that I was in denial all those years. I knew something was wrong but I just did not want to be like my father. How ironic that all my efforts brought me to the same place. On the bright side: I did learn a lot about food and diet in those years. Also herbs and alternatives. But in truth I was a fool. I wasted so much time and energy going in circles with that "demon" raging inside of me and taking over my life.

I suspect that makes it all the harder now to deal with life and going on. Where does one start now? Everything is gone now including my energy. It is so hard to pick up the pieces. Even harder to want to do so. I read these articles in the Kidney Foundation newsletter and I think how nice it must be to have kidney failure without all the side effects I have. Those articles really can be depressing to the majority of patients. I wish I could get that across to the people that write them. But they do not listen.

So... the question for today after this long ramble is: Where to go from here? I am stable but I have no money, huge bills, no energy, tons of time and cannot get around well. Quite a dilemma. Seems like there should be something a dead guy can do.

3:32 PM 5/8/2006
Ah Monday. Another nice day in Tennessee. I really like the weather here. So pleasing in all of the seasons. Only thing better might be a beach but of course that brings all those storm issues too. These days it seems prudent to avoid the beaches as places to live.

Not too much going on today. Sandy was kind enough to call the clinic and arrange for me to never have Nurse Sandy again. That was a nice way to start the day. Perhaps now my fistula will heal a bit. I am going to have some serious bruises for 2 weeks I expect. I still want to stick some needles in her arm just to "educate" her a bit. However I will restrain my revenge issues.

Having trouble in the clinic is a real issue for the patients. It is hard to get the staff to listen and somewhat scary to consider causing trouble for the people that have your life in their hands every other day. Since I tend to value my life I am slow to speak up about such matters and I am sure that the incompetent people depend on that. As a patient I have less options and rights although everyone says otherwise. The reality of things is that I am very dependent on the system. If I boycott any aspect I only have a week or so before the sick feeling comes and I would have to give in again. I think the Medical folks know this and use it all the time.

It would be so nice to be treated as a customer instead of a patient. Customers have real power in the marketplace and can shift dollars and choices to other vendors. In my case, however, I am not a customer. I do not actuall pay for the services I receive. I do pay premiums to Medicare like insurance, but I am no fool in that I know the output is staggering compared to the input. Same for my Medicare Part D drug program. Somebody is paying a lot for my drugs but it is not me.

I think this is unfair to the working people of America. And it is a sad statement on the status of capitalism in America today. All this program ( Medicare) has done for the people is cause huge increases in price. No worries that the sick people cannot pay... we'll just force the healthy people to pay for them! I can well imagine how the pill makers are laughing so hard right now. All those millions of new "customers" that have guaranteed backing to pay for it all. Instead of competition lowering prices now the prices can skyrocket and Medicare will just pay for it all.

Indeed we could use some real competition. If the government was to leave the health industry we would all be better off. Prices would drop and only the best doctors and care facilities would stay in business. People would shop for medical care like they shop for a TV.

Schools could use a good does of it too. Imagine the fantastic schools we could have if the school had to answer to the parents instead of the state? Public schools are a disaster. 5 minutes on CNN will teach you that. Private schools might start producing intelligent students that demand more out of life... goodness... no wonder the state supports public schools. They sure don't want young people thinking for themselves.

Our society will never change, however, until people are willing to give up the free ride. We have the mess that we do simply because the voters continue to vote for the people that promise them the most freebies. You know the ones.. the freebies the 49% pay for when the 51% vote them into place. The same thing used to happen eons ago when people would farm and hunt for food and then the raiders came and took the food. If the farmers resisted they killed a few and threatened the rest. These days we use the IRS but it is the same effect.

I am looking forward to home dialysis simply because I will no longer be as large a part of this system. I am already ignored as a person and disrespected as a thinking human. It is hard enough being sick but add on the negation of my life and I often wonder why I do all this. Here is a news flash: My IQ did not drop in half on the day my kidneys failed. That being the case... why do my nurses all talk to me like I am 5 years old? I am still an adult thank you.

The last few weeks have been very difficult. I have often wanted to quit. Alot of it has stemmed from the new people at the clinic that have made my days very negative. Some has been the way I have been treated in the general public. Walk around with a stick or ride in wheelchair and see how your life changes. People start to act really different and weird. Hello... my feet hurt... nothing more.. no virus to spread... won't get sick if you look at me. Geez.

Clearly the philosophy of most people is a mess. They honestly don't know how to live and interact with people. Perhaps I should start classes on rational thinking? No, most people are so busy evading reality they would never want to spend time thinking. Our best bet now is another great depression. Perhaps then people will realize that they need to wake up and do things for themselves.

Viva le private business!!

9:23 PM 5/6/2006
I have been at a loss for what to say of late. For many days I have been depressed and bummed out. Apathetic in point of fact. I spent most of last week playing Dungeon Keeper II because it seemed more engaging than talking to people.

Dialysis has been uneventful until today. Normally I go in and get stuck and then sit there bored for 4.5 hours and go home. Woohoo. Today unfortunately Nurse Sandy, also known as the most negative person in medicine, managed to infiltrate my upper arm on the first try. I now have a painful knot over the top of my fistula and it is right up in my arm pit. Hard to move without feeling that sting. I love how they miss, screw up my arm for 2 weeks and all I get is a lame "sorry". How about if they miss then the patient gets to go digging for veins in their arm for several minutes? Seems right to me.

Clearly enough is enough. I should have said no the very first day they brought her around to do training on my access. I had my doubts but decided to be a decent person about it all. After all I thought... people need to have a chance to train to do their job. What a fool I was! Now they have her assigned to my area all the time. Most people get better in time but this one seems to have no desire to improve.

So clearly I will have to get moved away from her to a new area. If they won't move me then I guess there will be some fireworks as I walk out. I think 3 screw-ups on my arm is enough for anyone. No more for me. I can honestly say I am now very much in favor of home hemo-dialysis. I was not really excited about it but I am getting more so all the time. Looks like training will begin in June. The new NxStage machine ( http://www.nxstage.com ) is very interesting and actually portable. I think that would be neat to be able to travel and still dialyize.

I am shocked at how crazy the clinic is of late. It is hard to describe the mood there, but something is amiss. There seems to be a total lack of professionalism of late. Even worse there seems to be a general sense of chaos most days. Some days it is worse... and today was the worst yet. It is hard to imagine with the money they take in that staffing or equipment would be a problem but somehow it is. I always had a general rule that retail shopping on weekends was annoying because all the good staff gets weekends off. Now I have to conclude the same at my clinic.

I am really starting to wonder why I endure all this foolishness. When I look around me at the society in general I see the same attitudes and behaviors. People have lost their way and the stress is starting to show. The worst part is that I am fully aware that there is nothing I can do to affect things. I could not have done it before... I sure cannot now that I am broken. Most days I cannot drive and can barely walk. Somehow I think changing the world is kinda out of range.

Perhaps I have simply over stayed my welcome? Nature killed me off 8 months ago, but silly me I thought sticking around was a good idea. Every day I am reminded all the time of the things I can no longer do. Every item in my home is taunting me. Things I loved so much are now just sitting there. I think it would be less cruel if they told you at the hospital that you could never go home and gave you a little one bedroom apartment so you could start all over.

Instead I am constantly given false hopes and "Peter Pan" advice ( credit to Billy Joel) about my life and how I can do so many things if I just "beleive". This would be stunning comments from regular idiots but it most often comes from the people in charge of my medical care. Of all people they should know what I can and cannot do. Of course that would require they actually payed attention for five minutes. Trust me... 90% of them do not care one iota.

I am sure anyone reading this would say I am really negative and depressed. Why do people always say that when I start speaking about the truth and reality of things? Like I make this stuff up?! That has to be the basis of the madness in our world today: evasion of reality. There is no way to fix things if you refuse to actually name them first. I get that a lot too. People are always trying to negate me or my feelings or my thoughts. It is really strange. Since I became ill I have had more people telling me how I feel than ever before in my life. Like how I feel is a mystrery to me? Hmm... I am pretty sure I can make up my own mind about the pain.

It is all so crazy. People are so desperate for me to go along with the fantasy. They really get tense and stressed when I start to speak the truth. Most try to change the subject right away. Many look like the deer in the headlights because they know I am right but if they accept it as real then they can no longer maintain the fantasy. And gosh darn it.. then they might have to do something about it all. How rude of me to thrust reality into their illusions!

Having a terminal illness is a rude wake up call. It forces you to see the world as it is rather than what you might have thought. I don't get to pretend anymore. What really blows me away is that anyone else even wants to pretend. All of us are dying in due time. Perhaps we should wake up and realize that foolish illusions and foolish time wasting is quite the dead end street?

Do you really want to think in your last dew minutes about all the things you never did? Or all the time you spent on things you hated doing? Been there, done that... it was not a happy place to be. So much of life is a waste of time. Why oh why do we squander such value?

7:51 PM 4/25/2006
Bar the door and hide the kids... I am about to make a sweeping generalization! Nurses are some of the most uncaring people on the planet! Allow me to clarify a bit and then you can send me all the hate mail you like.

3 times a week for 4.5 hours each time I sit in my chair at the dialysis clinic. I have been doing this for about 8 months now. Many times I have spoken of the conditions there and overall they are not so bad. Rather wasteful of time and primitive in my opinion but tolerable. The personnel is another issue all together.

At first I did not notice all that much. However over time I started to feel very depressed and rather grumpy at the end of the sessions. Nothing would happen that I could point out, but in time I realized that what was happening was the nurses. Nurses have a nasty habit of talking... and talking.. and talking. Did I mention they talk alot?

This alone would not be so bad but I have noticed in many situations that nurses are about the most negative people around. Oh they pretend to be happy and to care about people but as you listen in the quiet times you begin to hear them voice their real feelings and thoughts. Today was a special day in the negative department for some reason. I heard all manner of grumblings regarding how tired they were and how hectic the work was and I personally saw the facial expressions when people needed help.

Mind you we cannot get away from this verbal trash and often it is happening on the other side of the room. One can say very little about it at the time and honestly... how wants to confront the nurse that is supposed to take care of you in the next emergency? Even more so these same persons will be sticking me next week and it is so easy to miss "by accident".

20 some years ago I worked for a time in a rest home. I was there to make some structural repairs and eventually took a job in the kitchen after that repair job ended. I would love to say the staff was caring and concerned but again I have to be honest and report that all the nurses there hated their jobs, hated the patients and often said some really rude things not only out of range but also to the patients. There were even some situations where care was withheld as a form of punishment for the old folks that complained.

A year ago I experinced the hospital ER and eventually regular hospital care. Once again I was struck my the foul attitudes and negative words of the staff. Honestly after a week I was feeling like I was in a German work camp. And if one more blood tech snarled at me at 3 am simply because I was a bit groggy and confused as they dug at my arm I was gonna hurt somebody.

I have experinced the same thing over and over again. The regular doctor's office, the pain management clinic and finally at my own clinic. Every time there are nurses that are rude, condecending, hateful and just plain dead ass negative. Say what you will but this horrible attitude affects people. And it really affects the people like me stuck in place for half the day while they whine about their lives. What is amazing is that I have talked to many nurses online and in person and they are just as intensely negative in person too. Even on the off hours.

Honestly I do not feel comfortable writing down all the words to express how I feel right now. It would be so offensive that even I could not justify it. I am however sick of it. I am very tired of feeling like an object of no importance. My entire society says I am worthless and I really don't need my caregivers to echo that for me simply because they are tired or hungry or overworked or just plain damn lazy! It was not my choice to be ill and it is their choice to work there and get the money for the work required. If they don't like the conditions then they can find other employ. I cannot, thank you very much.

What has happened to America? I would love to say this negative attitude is new and isolated to the medical professions but it is not. In the medical arena this foul verbal pollution is damaging to some very ill people, but I see it and hear it in many other places too. How many times have you had a similiar experince in some business? How many times have you simply needed help... help you are paying for I might add... and gotten nothing but nasty attitude? Is it my fault that millions of people have chosen to work in careers they loathe? Do I have to take up the bilge just because I ask someone to do their job... a job they selected I might add?

I have people tell me all the time that my philosophy is wrong and too harsh. They tell me they are more than happy in life and have no need of a solid and integrated moral code. They accuse *me* of being the problem in America because I will not go along with the flow and just be happy with the sewer they have created of the world.

I would rather die than go along with a philosophy that has millions of people acting like this!

How long are we going to play this foolish game? How long are we going to allow our peers and neighbors to be hateful and rude and harsh with us? How long are we going to lie to ourselves and pretend that our lives are working well when we hate our jobs, kids, spouses, and relatives?

My nurses are fools. I would trade places with any one of them. Their pathetic issues are nothing! What I would not give to walk again as they do and to be able to work as they do. Perhaps if more of these uncaring people fell terribly ill they would gain a new appreciation for the lives they seem to loathe so much. All I know is they are creating a totally negative environment for those of us trying to survive just one more day. I know by the end of this day I was more than ready to quit. If this is the world that become of good christian values then perhaps it is time for me to go because I am so ashamed of humanity today.

And if they are right and there is a god waiting for me on the other side, then send me to hell because I want nothing to do with a god that fosters people like my nurses. Oh... did I not mention that? All of them are fine, god fearing people. Oh yes.. devoted religious people. Ponder that for a moment. Then puke.

10:45 AM 4/24/2006
On Saturday I learned the meaning of the phrase "really hit a nerve there". Unfortunately at times one can stick the dialysis needles right into a nerve on the way to the vein. Trust me this is a new level of pain. However the stick was good and the pressures were good so I endured the stinging and twitching for the next 4.5 hours. I needed the good session for the long weekend and I was afraid that resticking would only bring disaster.

There are many phrases in our culture that take on new power and meaning when you are the one on the receiving end. Hanging on for grim death comes to mind when I see some of the other patients there at the clinic. There are some people that simply exist... and I could not tell you why.

Life and death issues are important. I often discuss them here but they really have stong emotions and powerful moral implications in real life. Death is a simply a state of non-existence, but in being "nothing" it gives contrast to life. Day would be pointless without the knowledge of night. The truth is that "life" gives us our reason for being. It supplies us with our end point in all moral code discussions. It even provides the backdrop for the decision of what to eat for lunch today. As simple as this sounds on the surface, one must determine what is life giving and what will not cause damage or disease or eventual death. If we were immortal then so many questions would go away. And life would actually be boring.

Many people fear death. Ironically I find that lots more fear life. Death requires no decisions. Life on the other hand requires a constant path of clear thinking. Living in America however one would hardly beleive that as we watch people do all manner of things that clearly bring "less life". I must say however that the worst one is evasion of reality.

Evasion of reality is often known as denial. However the mere term is so small in comparison to the reality of the damage. If we live in reality and we desire to live well and happy... and perhaps even long... then there must be a fairly clear path of behavior that will foster these goals. In a way you could say there is only one right answer on how to live and think and behave if you desire life. For those that desire death.... well.. I guess the sky is the limit. Please just stay a few feet away from me because I am traveling the other way think you.

I want to share an article with you. It is written my Dr. Hurd who is an Objectivist therapist. One of the few that I know about and the only one I know that has a nice website. This article is free so click away and enjoy. The topic is Evasion of reality. http://www.drhurd.com/newsletter/evasion-article.php Go ahead... I'll wait..

Now I certainly saw myself in that article and there are still some things I need to work on for sure. Ironically prior to writing this blog entry I was discussing this matter with on online friend and in the end she made it clear that she no longer wished to speak with me. I was disappointed because she seemed quite intelligent but in the end was so afraid to face reality and the changes it would require she ran right off into her illusion and probably breathed a sigh of releif that she was safe from having to think anymore about all those nasty conflicts in her life.

People often accuse me of trying to get them to "convert" to my way of thinking. Perhaps the religious people need one to convert to their fantasy world, but I have no interest in this quest. My life is based in reality and the idea of people converting to my way of thinking is much like a sleeper "converting" to real life again upon waking. This is reality people. There is nothing to convert to... you just have to live in it.

Am I angry about this exchange? No. If anything I am disappointed to see yet another good mind drift back into the conflicted state of denial. I am sure they think that they are better off not facing all the issues and problems... better off not rocking the boat, but in the end their little world comes crashing in and damages them. If you speak with such people you quickly find out they live almost miserable lives of drama and trauma, but oddly will defend them to the death rather than see that there is a better way.

I see this scenario played out all the time at my clinic. My nurses and the other patients constantly lament over their lives and upon listening I can clearly see how evasion of reality has caused all the trouble. By comparision my life is actually "boring" thank goodness. I may have my days but if one honors reality as often as possible there is little drama because at least the events are all real and have real solutions. There are no solutions in fantasyland because the problems are not even close to real. This is probably why soap operas have gone on for years. There is no way to end them in the storyline because 5 minutes of logic would solve all of it. Bleeh!

So my quest goes on although I have no expectations. I would love to come across people that actually try to live in the real world and actually try to think when problems arise instead of running further into their own personal dream. You would think it easy. Many people insist they live in the real world, but upon speaking to them you find their body is here but their mind is not on the bus.

I would love to see the chaos resulting from one single day of no evasion. A single day of real truth and honesty. I think there would be few relationships or friendships left because most people use no judgment on such things. They blank out whatever is "icky" and pretend for the rest. Life is easier that way they think. Judge not lest ye be judged. What a horrible way to live. What a dangerous "open door" to terrible people in today's world. Perhaps this is why we see so many women abused by men they "trusted". Perhaps this is why so many old people are abused by people they "trusted". Perhaps this is why so many people are killed by people they "trusted".

Unconditional love, life or friends is not a good plan. When standards are replaced by "anything goes" we all have a problem. Go ahead... evade reality... see how long your valuable life lasts.

10:10 AM 4/19/2006
Funny how things can change so suddenly in life. I love that random factor... it always keeps you guessing. Of course I am speaking of my new Duragesic patches. For a change a prescribed medicine is doing more good than bad for me.

I was not able to get them until Monday afternoon but I must say I am impressed with how well they work for the relief of chronic pain. According to Medical websites online these patches are made of a drug called Fentanyl that is 80 times more powerful than Morphine. Let that soak in for a moment... wow. They last 3 days at a time and do the slow trickle thing in terms of getting the drug to you. Very easy to apply.

I have been very impressed with the results. My level of pain is less, I was able to rest better and have felt amazingly good all the way around. Coupled with stopping my Allopurinol for my gout things are really improving almost overnight. It was causing a terrible burning feeling and making my thoughts confused. I still have to hobble around a bit but my mobility is getting much better and my attitude is improved because I am not in constant pain.

At first I was very disturbed by the entire situation. I had crossed a mental line in my thoughts and really had never wanted to go to this level of drug usage. However the dosage is small and having a terminal disease is different than just taking things to "feel better" for a bit. In my case the natural warning signs of pain are now constant because my body is trying so hard to tell me I have a problem. Thank you.. I have the message! Wish there was an off switch for that mesage sometimes. So this time I think the pain management folks got it right. Relief is a wonderful thing!

Over the last few days I have been doing some reading regarding some topics and concepts suggested to me by a new online friend, Richard Darkmore. He and I have been discussing some alternative philosophies like Satanism and the Multi-Capitalist Party among other things. If you have some time it is interesting reading to be sure. Another suggestion was a fellow by the name of Fred Phelps. Mr. Phelps is a very religious person and his website is so offensive I am not sure I can recommend it. Christians are such violent people! Imagine reading Satanism and then extreme Christian right wing stuff... and prefering the former to the latter!?

Personally I think I will stick with Objectivism and it's rational approach to life. No extremes required. Objectivism is so well founded in the human spirit of achievement and skips all the violence, hatred and brutality of the above mentioned groups. Our non-initiation of force policy is something I think the entire world could use a bit of today. And the above named groups might do well to study it a bit too. You will never see a true Objectivist shooting up a McDonalds or blowing up an abortion clinic or bombing a mosque in some Muslim country.

Mind you we will not pause even a moment when it comes to self defense, but how many people these days simply start the issues all by themselves? All this first strike foolishness is going to result in nothing but more violence and that only helps the worst elements in our society. Nothing amazing was ever produced by thugs and criminals. That honor always goes to free minds in a civilized and free culture. And freedom starts with the individual. Human rights are always based on individual humans.

This all comes to mind because of the state of the world today and oddly enough my medical adventures. I have often stated how I feel like a criminal when dealing with the doctors and clinics. I know there are people doing wrong things that they must deal with but the philosophy of these places is that all people are evil at the core.

I disagree.

I think 99% of people are good folks that are just badly confused in life. Centuries of bad moral codes and confused, conflicted philosophies have left them puzzled and lost. Ironically the worst offenders in this mess are the many churches and the many political groups. Church of God, Church of Satan.. it does not seem to matter anymore because all they seem to want is destruction of the human spirit. Or worse... destruction of your spirit so they can take what you have. Political groups are exactly the same.

Honestly I grow weary of the fighting. I would like to see a world where competition was only about new ideas and advancements in business. How amazing our lives would be if all the insanity stopped and was replaced by a spirit of advancement? I know I look forward to more medical advancements as well as other fields. I have a lot to gain from that effort.

So today I invite anyone reading this to read something new. Try researching your enemies and your friends. See if perhaps there is not a flaw in your thinking or theirs. Perhaps if we all learn about each other we can dump all the mystic crap and the violent theories and realize people have so much in common. Perhaps we can also finally grow up and evolve at last. I think that would be grand.

3:23 PM 4/14/2006
Ahhhh.. Friday. Time to visit the pain management people again. This time I was only required to be there 30 minutes early. We certainly would not want all those important people at the pain management clinic to have to wait of the likes of me... goodness. This time there was less paperwork to fill out, but I also was handed a lovely paper that explained in great detail how the clinic would be cutting down on the pills they give out and on the number of slack jawwed, pathetic, drug seeking lamers scamming the system and stealing the very foundations of our American way of life!

Oh wait... they mean me.

I am so very tired of being treated like a criminal when I go to the doctor. I go there because I need help. And they charge so damn much it is hard to even get help anymore. Today I went in and was given even stronger meds to help deal with all my joint pains. I took in my previous meds as demanded and they did not even want to see them! It is all about power and control with these people. The letter handed to me at the beginging was all about that too.

Here's a thought... how about we charge reasonable money for the drugs and stop treating them like some rare jewel and see if people calm down a bit? The truth is even scarier. People take drugs to escape reality plain and simple. Perhaps we need to work on why they want to escape? Could it be that the statists have crushed the human spirit so far that people want to leave life? Sounds about right to me.

I have to admit that I often start thinking about taking illegal drugs. Since the pain management people and the doctors seem so uncaring and unmotivated to solve my pain issues I think perhaps I should start thinking for myself and dealing with my own troubles. It is literally insane that ill people should have to consider being criminals just to handle real issues. I guess if I get busted I will not have to worry about paying for dialysis anymore.

Meanwhile... back in the online kidney support groups. My goodness. What can I say about some of these people? I guess it is nice their lives go so well. And it is nice they are so direct with all their pollyanna advice for the rest of us. Now if they could only transport me out of my body and into their pristine heaven of happy thoughts. Ohhh.. is that a butterfly or an angel? Ohhhhh...


Newsflash... PKD hurts. It rips your world apart and tears up your bones along with it. Your world dies and you are left wondering what the hell hit you. Do I sound angry yet? Yeah.. I am angry. I am so tired of stupid people telling me how to feel and what a wonderful world awaits me if I will only be more positive. I am so tired of people telling me that I just need to give it some more time. Oh that's a good one... a terminal person giving things more time. Do they know how stupid they sound?

Hey, I want to live as much as the next person. I want to live to be a thousand years old. Sign me up for the bionic parts. Replace all that I am with machines. Give me immortality if possible. But oh spare me life if I have to live it surrounded by nimwits that make up reality as they go! It is really getting silly anymore. People are running into their fantasies as fast as they can go because the world outside is getting weird, yet this is the world they wanted and made. This is what evading reality does for you.

Some might say I am just angry and depressed because I am sick. Could be. Might also be that I am so very tired of a world that could have been so much more wasting my valuable time wallowing in the muck with them. Freedom people! Personal and mental freedom. We could be gods if we tried. Why do we satisfy with being "sheep"?

Shall I rant about the upcoming Easter holiday? Sure.. why not. Everybody get out your hookum T-shirts. Check this out... churches spent centuries trying to rid the world of the pagans and wiccans. They wanted all those demons out of the way. Now I see tons of churches sponsoring Easter Egg hunts! Let it soak in.. yes...here it comes... feel it yet? That's right... Easter Eggs and Easter bunnies are all pagan rites from the past. These fools are so stupid and confused they actually think this is a good idea to remember and celebrate the very pagan rituals they wiped out.

I cannot wait for Halloween again. Does this seem intelligent to you? Gee... let's all kill and degrade entire populations and then later on celebrate what they believed in... minus them of course. Thanksgiving anyone? Christmas maybe... all the same. They really are out there anymore... desperate to do anything to draw people in... including stealing rituals.

Now let's go for the big guns. The white house and the President will sponsor an Easter Egg hunt. This would be the same President that cancels stem cell research and supports school prayer among other highly right wing christian activities and thoughts. And we wonder why the country is such a mess? Let's just say they are way confused and hope homeland security does not come for me in the night.

What do all these issues have in common? Glad you asked. The common point here is delusion. Or perhaps we could call it evading reality because I like that phrase better. Simply put.. walking around in a dream world. These people have taken over the world very quickly. That is easy to do when you make it up as you go. Tough issues? No problem.. just make something up. Natural disasters? No problem... jump on it with spin doctors. Political issues... call the spin doctors again. Fuel shortages? Pollution? Failing economy? Plants closing? Obesity rampant?

Spin, spin, spin.

As long as we all ignore the lies things are not going to change. As long as we accept fantasy devoid of proof there is little hope for the future. I know this personally because as a person that sits in the chair 3 times a week I have to live in the real world. And I am getting pretty sick of the people around me thinking they can make me go away by pretending I am okay. They have another thing coming.

So if you sit in the chair or are tired of illusions... drop me a message. I would love to hear from other people that are sick of this crap too. Jim@JimCales.com will get right to me. Speak your mind.. positive or negative. I never turn away from reality... even if you disagree with me.

5:16 PM 4/12/2006
I have not written anything for the blog of late. Nothing has happened that seemed worth commenting about. Dialysis is going well... very stable and boring. I read alot while there. Days at home are most about computer time or watching TV. My knees and feet prevent much else. Sometimes I go to the store but it is a short trip.

I have been wanting to get back into the shop to work, but standing for any length of time is really hard now. My doctors all seem to be ignoring the fact that I can barely walk. Not their primary concern it would seem. They seem to think that living at all is grand... why bother with something as pointless as mobility?

This fact has really come home of late at the clinic. My nephrologist makes rounds generally on Thursdays. He looks over the info on the chart, asks how I am, grunts and nods and scoots on to the next person. This process takes all of 2 minutes on a good day. Suddenly he is visiting me on Saturday too?? Seems to be little to do since my last session. And then again on Tuesday as well!? The rumor in the clinic... started by the nurses.. is that he needs to bill more to pay for his upcoming vacation. I cannot say that this rumor seems odd to me. He seems to do the minimum possible anyhow including sending me off to other doctors for simple things related to my kidneys. Hmmph!

Speaking of vacations... my goodness the weather is suddenly nice again. Windows open and all. I also noticed the price of gasoline has now gone up again. No doubt in preparation for the summer vacations. If it gets to $3.00 per gallon I think I am going to be in trouble. I will not be able to get to the clinic. Maybe I can ride the CAC bus? That's a nightmare of waiting around... if they even come. Public transport for the poor is not what they claim it to be.

I have the same trouble with money when it comes to my woodworking in the aforementioned shop. I cannot afford materials. I have to admit I might have to start selling off tools just to eat. Nobody wants to talk about the terrible finanacial burdens of dialysis. In truth there is no burden at all... you just go broke and then homeless and then starve.

If I seem negative... perhaps I am? With the current situation in my life I am really starting to be concerned about the world events around me. As a dialysis patient I am very dependent on the society around me functioning well. I can tell you honestly that I see some frightening things going on here. I already spoke of the gas situation. That will affect transport and food prices. The war-mongering of our president is certainly of concern since that might bring terrible issues to bear on our already staggering economy. I am less worried about Iran's nukes than I am about Tennessee's gas prices.

I also see a terrible tax burden on the working people. The immigration issues of late have brought that one to the front. Hard working people are sinking slowly into the abyss with no way out. The government wants more and more all the time for it's "needs". As a person that only gets Medicare and nothing else I find this all annoying. I have to find a way to pay as I go... why do others get money for free? And why do our enemies get billions? Does this make sense? Surely the money we spend in other countries could have solved the fuel problems here? Brazil has alcohol as fuel... why don't we?

Statism is the term for moving to a situation where the "state" controls everything you do. It is very clear our mixed economy is propelling us that way at high speed. Capitalisim and Statism cannot live together. Right now the only question in my mind is will we have a right wing dictator or a left wing porletariat? Nazi Germany or Soviet Russia? If you think I am paranoid... go read your history. We are almost there people.

I can see all this from my dialysis chair. One thinks about such things when you are so dependent. As a person that counts on technology I need the best and the brightest. I need strong and free minds to come up with solutions. More government and more rules is not going to help anybody that is ill. In fact quite the opposite. We need true capitalism now more than ever before... before it is too late. We need stable companies that can make honest profits from cool ideas and new inventions. We need the minds that never think of mooching or looting but instead only want to be productive.

I fear for the future. I see the dark ages coming again. I see the spark of mind going out or more correctly being squashed out. The people in charge of our world are not interested in your freedom or needs. They only want to be kings and live well as long as they can... and to hell with your life. These looters and moochers see you and I as a resource. Ever been called a human resource? I thought you might have. It is a scary thing to think our parents and grandparents unleashed these "devils" on us, but they did. They somehow thought evading reality would be okay if enough of them did it together.

I fear all they did was open a door. They opened a door to the horrible thing now in charge of our world. It has many names but we all know it well. I will name it by its favorite words, "I wish it... so it is!" These terrible beings think reality can be ignored and life will be what they desire in thier wishes and whims. And right now we are feeding them and making them strong. We need to stand up and say no. No more of the illusions... no more of the lies.

No more evading the real world.

8:09 PM 4/6/2006
Today's blog entry is a little different. I decided to write it while on the machine. Normally I write at home on the computer instead of on paper with one arm tied down, but today I wanted to get the feel of being in the chair. So this entry was written earlier today at about 10:15 am.

I have been here about 30 minutes and my heart just stopped pounding. There is no fear like walking in and finding you have a new nurse. You never know if they are good or bad. Worse... can they stick you right or will you go home with huge knots waiting to become lovely, purple bruises?

My nurse today was Sandy who has been training for several weeks. She is an R.N. but is new to dialysis. Alas, today she was running solo hence my elevated BP and heart rate. She has already infiltrated my fistula once while training so I was quite concerned over a repeat. Thankfully she did it right but it was a tense 10 minutes to say the least. Getting stuck is always ( for me ) the hardest part of dialysis so you can see why a new nurse is troubling.

I come in at the start of the shift change. It is a busy time for about an hour when early patients leave and the next group comes in. Nurses and Med techs buzz about tending patients, tearing down machines, and setting them up again. Lots of noise, activity, and a fair amount of joking and talking. Later in the day things get calmer and most people fall asleep. Then the biggest sound is snoring.

There are different moods in the clinic on different days. Today the mood is subdued... perhaps because of the coming rain. I like the spring rains but the low pressure does cause pain in my joints. From my window in the corner I can see the backyard of the clinic. There are trees, grass and a few birds. I even have a nest with robins out on the eavespout.

The clinic itself is a strange and overwhelming place. I hardly see it anymore, but to someone new it would appear chaotic I am sure. So many people, so many machines, so much blood everywhere, medical supplies all over, and blinding, bright lights to frame it all. There are no shadows here. In many ways I am reminded of a fast food eatery. However there is a smell... antiseptics, tape, chemicals...it all adds up. I call it "medical smell". We all know it. We probably all dislike it. And it clings to you even after you leave the clinic.

The dialysis machine beside me, on the left, looks like a prop from an episode of Doctor Who. Touch screen, tubes, a blocky, white box filled with motor noises. It grinds patiently away. Ocasionally, when I move or a parameter changes, it will howl like a banshee demanding the attention of a nurse.

The number of supplies consumed here is amazing. Each setup needs tubes and dialyzers and there are huge, red bio-trash cans to receive it all at the end. Even here everything is disposable. Welcome to America. Literally cases of supplies come and go in front of me on the supply cart.

My purpose in speaking about all of this is simple. My life is not normal. Nobody that sits in the chair is normal anymore. Why does this matter you ask? Amazingly there are people, some that sit in the chair too, who think that our lives should be normal and no big deal. I guess they need to think everything is okay to feel better. Honestly it can be hard to know your own mortality in this way. And in case you forget... there is always this place to bring it into sharp focus.

I find it challenging to function in normal society. It is difficult because so many rules no longer apply to me. Certainly average moral codes do not. The purpose of a moral code is to perpetuate life in a positive way. Immoral actions have the opposite effect... they decresae life due to negative results. In a way you could say that Polycystic Kidney Disease is immoral although morality requires choice and PKD simply does what it does. A is A.

None the less, it is hard to care about normal things including rules. My standard thought is: "What will it do? Kill me? Big deal." This applies to many things in my life. Sometimes it is cheating on my renal diet. Perhaps having a beer while fully loaded on pain meds. But most often I find myself not caring about petty, social rules. I find myself caring less and less if I offend people with my words or thoughts. I say what I think and I don't mind verbally smacking people around whn they say stupid things. Ironically most people I meet seem to have adopted this position long before I did and most of them are just fine. Makes you wonder.

I feel disconnected at times. Today was like that. I fell as if I am watching my body go through the motions without me. I guess you could call it apathy? Perhaps it is something more? I am not depressed just unconcerned. I think the best analogy is a job you have left. Once you have a new job the old one seems unimportant. Events there seem so far away and not your problem anymore. Such is my world.

I try to care but so much is beyond my grasp now. So many things that I cannot affect. I often wonder if I ever could? Perhaps that is the real lesson of my life? Perhaps a person should spend more time being rationally self interested and worry less about all the rest. Maybe that is what has happened to me. Could it be that in dying I finally grew up and now I am simply thinking and acting as I should have since I was 18?

Life seems so very clear now. I know what to do and how to be. I am simply running into people who do not know how to live. People that really need to grow up mentally and emotionally. People that need to cast aside illusions and live in reality. You know... that place where dying people have to live... like it or not. The place where all proper humans should live.

What can I say? Dying has been very enlightening!

an addendum to the day...

I chose to quit early today. My upper needle stick was a bit shaky as it turned out. The pressure was high all day. I wondered at the time because Nurse Sandy had trouble getting it in there. Later in the day as I repostioned a bit that questionable stick poked through and leaked into my arm. Thankfully another nurse was right there to stop the machine so I only had a small knot.

Rather than getting stuck again and risking further damage I decided to just call it good for the day. Enough fluid was removed so I will be okay and my other needle was okay so the blood could be returned. In the future I will simply ask for a different nurse to stick me. I cannot let my life depend on one person's inability. I wonder how many other people she has infiltrated so far? People need training, but not to the detriment of the patients. If our arm gets messed up.. we go to the hospital. And the incompetent nurse goes to the next victim.

3:52 PM 4/5/2006
I am a stupidity bigot. There... I said it. It is true.. I hate stupid people and stupid things.

Now I am not speaking of blunders and honest mistakes. Accidents you could say. Honest goofs. I am talking about things and people that do stupid things and say stupid things because they lack the good sense to think. There are so many examples of this in our world today that I can scarcely decide where to start.

Perhaps a good place is rules. There are a lot of stupid rules. These are rules that ironically often are all about the stupid people that did things to make the rule needed in the first place. One that comes to mind is a rule at my clinic that you cannot remove your shoes during your dialysis session. The reasoning is that if there were a fire or emergency one might have to run out suddenly and if you have your shoes on things will be better.

Good grief! This is so classic in our fear based society. As far as I know in the many years of operation the clinic has never had a fire. There is little there to even burn. Even so... the floors are smooth and if I need to run to save my life I think I could manage. The end result is that I suffer having to sit 4.5 hours with sore feet because some stupid person thinks it is a good idea. I notice they are not in the chair next to me.

On to stupid people. Stupid comes in all shapes and sizes, many races and colors, and never fails to breed like roaches so there are more stupid people than smart ones on any given day. Living in Tennessee has given me new insight to stupid breeding habits. The short version is if it is female and there is a male... they mate. No questions asked. Bleech! Just add WIC and you have more stupid.

Slightly above this class of stupid is another class of stupid that I call "the norms". These are average people that function okay and live fairly well. They however also fall into the stupid mode when they tell me things like: "I don't want to talk about that ( illness ) because it makes me sad" or " I can deal with reality if I have to.. but later". Another favorite of mine is:"gosh.. I don't know how you manage to sit there for so long or face those needles everyday!". This statement most often comes from the person looming above me holding said needles... about to stick them in my arm. That is when stupid becomes scary stupid honestly.

Being ill with a slow but terminal disease has really been interesting. It has shown me the level of stupid going on in our society with new clarity. Folks.. trust me.. this thing is broken. There is so much stupid on the average day that one can barely function anymore. The news media does it, the medical people do it, the schools do it, the corporations do it. I am sure you can think of many stupid moments in your day too.

I know I harp on rational thinking more than most but this is getting..well.. dare I say it... stupid! At this rate humanity will gridlock in stupid mode somewhere in the near future. We have got to start thinking more and functioning better. All this "stupid" is gonna kill us soon if we do not. It is actually starting to affect us each day and cause great harm.

Need more examples? Cell phones at 70 MPH. Warning labels on products you eat or drink or use... if you need a warning should you use it? Hmm.. hot coffee comes to mind. Geez.. do I even need to get specific about the tax codes? There is so much stupid there it will carry us well into the future. And of course the mistress to tax codes.. government welfare programs. Don't get me started!

Yes.. I am a stupidity bigot. I have no tolerance for stupidity anymore. I call it out where I see it and slap it when I can. If more people did that we might have less stupid floating about. Perhaps I need to make T-shirts: I am a stupidity bigot. Run for your life!

What started me on this train of thought today? What didn't? One does not have to look far to see it. Can you imagine the heights we could reach if all of humanity embraced rational thinking and principles? My goodness... we could be immortal and spread across the universe at will. We are so smart.. and yet act so stupid. I think it is because we have embraced a flawed philosophy over the centuries. I think it is time to make some changes there and start acting like humans and not the animals we evolved from. We could be so much more if we cared enough to think.

I hope it is not too late. I hope that the critical mass of the stupid has not reached killer proportions. I hope there is a glimmer of concern for the future and that you will join me in trying so very hard to think and be rational. It is our only defense against all this stupid. We can make a difference if we try.

Monday, April 3rd, 2006
Oh my goodness... the time change for Daylight Savings Time. Who thought this was a good idea? I feel like a truck ran over me and lost and late all at the same time! Spring forward? yeah.. like a man casting himself into the nearest wall.

So very typical of the reality evaders that run our society to think they can move some hands on a clock and suddenly the universe will obey. Sorry folks... the human body has cycles and simply wishing it to change won't make it so. And what is this puritan fasination with getting up in the dark? Does anyone reading this actually like to get up in the morning before sunrise? Do you feel rested and well by serving wishes rather than millions of years of evolution?

In our society there is a push to move to a 24 / 7 arrangement. Some people like working all night and at odd hours. More power to them. But if this is the case then why even change the time? Our leaders change our time twice each year to supposedly save on energy costs and allow more people to work their little grunt jobs and still have some daylight when they need it. Honestly I think the idea is to not have riots in the streets when these people realize they are getting little in return for working drone jobs all their lives.

The arguement for changin time to save energy is pure crap. We have the technology to use the sun and wind for our needs. There is also corn for alcohol but even that is messy. Solar and wind energy are clean and abundant if we just use our minds. However, the people in charge want to live like kings on the profits from oil energy. Like the looters for centuries they think wealth is created by taking it not making it. So they take from the earth and rape us in the process.

Then to add insult to injury they tell us that we should conserve this energy so they can sell it to more people rather than developing the endless energy of the sun and wind. So we as Americans endure the ravages of poor sleep so a small group can make even bigger profits. At what point does this make sense?

As long as people in this country are willing to be blind and evade reality at all levels there will be little change. Most people I know have no respect for the mind and yet they use the products of the mind every waking second. Even the religious evangelists on TV via satellite curse the mind that makes the TV and the satellite feeds. Talk about biting the hand that feeds you!?

There is one path to sanity in this life: celebrate reason as the only absolute. Cast aside all manner of illusions and start living like the evolved beings we really are in fact. Take pride in being human and living as a thinking being. Teach your kids to think for themselves and to love the planet and the DNA we carry. As humans we need to honor the mind and respect the body. And we need to cast out this infantile moral code that teaches us to hate who we are and be embarrassed by our brilliance.

Are we perfect yet? No... but in time we will progress beyond our wildest dreams. Is it not time to start now? Is it not time to grow up?

10:09 PM 3/31/2006
Maybe I live a dull life? There has been little to write about of late either good or bad. Dialysis has been uneventful which is a grand thing. Today I have actually felt pretty good. It comes and goes... so hard to know when it will be a good day or bad. I just roll with it mostly.

Still reading my Ayn Rand books and delving further into Objectivism. The only real problem there is that as I get more clear and reality based... everyone around me seems less so. I see now why the world runs as it does. Most people have no idea that they *do* have a moral code and principles. They simply cannot express it because they gained it by accident and osmosis. This is a terribly dangerous state of affairs. How can a person live well and move forward if they are simply drifting in life with no real plan or code of behavior?

Sure enough as I speak with people online and in person I find there is great confusion. This all matters to me a great deal because my life crashed about a year ago. Now that I am in a position to actually start living again I want to make maximum use of my time. Drifting in life is no plan for a guy on the clock. Borrowed time in my case.

When I first started this blog I thought I was done and over really. I felt lost and isolated. I could not connect with the people around me nor make sense of what happened. Now I can say that it all seems to fit together for me and I actually worry that others I meet are more lost than I am. So many I speak with are sad and lost. So many are tired and lacking in any form of passion. Honestly it seems amazing that the people with so many years ahead seem to have no reason to live at all. And most will tell you that! Yikes!

Now that I am in a position to start over again I find that my greatest trouble is deciding how best to spend my time. I want to engage in meaningful and productive work once more. I want to feel that rush of pride and self esteem that comes with doing productive work. If I won a million tommorrow in the lottery I would start a business right away. For me there is no greater joy than to engage in mentally stimulating production.

I have a lot of people tell me that I should use my time for personal things. Basically to live it up as best as I can. I thought about this and realized it was such an empty path. And in truth... according to my moral code which is based on my life as the ultimate value... it would be highly immoral to simply waste away the time in pointless relaxation. Call me crazy but I would rather die working than sipping drinks on a beach.

Along this line of thought I was inspired tonight by watching the science channel. There was a show with Mr. Dyson of vacuum cleaner fame. What a great mind! That man is what I would love to be... driven by his passion to make things the right way. I have to say.. enough of this sickness thing. I want to get back in the game. I want to play some more. I may not have long to play but I still want to do so.

Game over? I don't think so!

3:59 PM 3/29/2006
Today has been very nice. The weather is finally warming up a bit and there is nice sunshine. I sat for a time out on our small deck in the sun. That was really nice. Birds singing and flitting about. I tried reading but of course was snoozing in mere seconds. I can think of worse things.

This afternoon I have been able to work in the shop. I limp about slowly but I eventually get some things done. Mostly I have been calibrating my machines. The movers were less than polite with them so I have to put everything back together. I have been shocked at how heavy it all is now. I was moving these items around 9 months ago with no trouble. Now because my BP is normal and my illness is in full bloom I seem so weak. No hand strength at all anymore. There are some parts to my table saw that I will need help just to lift... goodness.

I also have the dilemma of starting over now. New house, new shop and in many aspects... new life. Before we moved and I crashed I was working on making drum shells to replace mine on my drum set. Yes, once upon a time I played like a rock and roll fool. Now I would like to continue with my rebuild but I have realized that due to my weakness, gout and arthitis I cannot play anymore. In fact I can barely hold the drum sticks. Okay.. this is new.. now what?

Perhaps in time I will be able to manage again. This however is the shocking factor that gets so many people with ESRD. I have many conversations at my clinic with other people and they express this frustration too. No ability to do what used to be so easy. And then there is the fatigue as well. It is certainly a new world.

Ironically the government gives all ESRD patients a hard time. Almost any other illness or lack of function gets you a check but kidney failure seems to jam up the works. Perhaps it is because we do not look ill? Whatever the reason one seems to need a lawyer and lots of time to get said checks. Funny... maybe I should go to Iraq. I see stories on the news there where they give out U.S. dollars by the bundle to almost anyone in a turban. Honestly I think we need to just vote the entire welfare system out of existence. It is not working anymore for anyone. Not even for other countries now.

I would love to return to a system more like it used to be where a person paid for what they used. Period. Imagine what a great world it would be if you could work and earn and pay for what you need. No more taxes, no more gun to the head for charity you don't like, no more billion dollar aid to countries you cannot find on a map.

Most people think that if we did this most poor people would starve or die. News flash.. they are now. In truth if everyone had to pay for what they used prices would go down fast. There would not be any more government approved monopolies like insurance or health care. How long would doctors charge extreme prices if people had to pay out of pocket? Ironically Medicare and most insurance plans as well as Medicaid hurts more poor people than it helps by making it possible to steal dollars from the populace and simply pay the big HMOs.

America is a capitalist society. When we stop trying to make it a socialist charity things will get better. I suspect that end is coming soon. With a 9 trillion dollar national debt I think the game is just about over. The next crash is going to make the Great Depression look like a dinner party. If we don't return to balanced spending soon... there won't be any money for anyone.

Sometimes I am grateful for the fact that Social Security turned me down. At least I know what I have to do to continue in life. What an odd thought... I have to earn my own way. At least I can say it was fair and honest.

9:39 PM 3/28/2006
Well, well... aren't I the slothy one? Here it is Tuesday evening already and I have written not a thing! Honestly not that much has been happening of late. Monday was a nice day that I spent mostly in my robe and chatting with people online and the phone. I have Vonage so I can call anywhere in the world for almost nothing and bedevil unsuspecting productive people when they least expect it. Some even like it... go figure!

Monday is kinda cool for me because I am on my long weekend yet. I like it because my AV fistula in my arm heals more and I get a small break from the needles of death. Just kidding... in fact today I was stuck and felt nothing. I was really amazed. My EMLA cream does a find job. They tell you to use it an hour before hand but I find that an hour and a half is even better. I discovered that one by accident when I was delayed one day. Gotta tell you that dialysis needles are a lot less scary when they don't sting.

I must be doing something right of late because today was yet another day where nothing happened. No misses, no BP drops, no nausea... zip. I just sit and read for 4.5 hours and sail on through. I guess there is some truth to the articles that say it gets easier as it goes. My experince says the first 6 months is hellish. After that... not so bad. I could learn to like this if it goes like this all the time. Now all I have is a little fatigue.

Random thought of the day: A couple of my nurses are pregnant. What it is with pregnant women? I think the modeling industry has put the wrong person on the covers of magazines. There is little in this world that glows and smiles like a mother to be. Maybe if I ask them to stand next to my chair for a bit some of that glorious energy will rub off on me? Probably not, but one just wants to soak it in. Nice in that sterile environment.

Still reading philosophy today. yeah.. it is a long book. Still, hard to complain when the information is so sound. Today I was reading about virtues and morality. Objectivist morality is a bit different than most would recognize. Being based on the human life as it's value it is almost opposite of the normal "morals" from say a church or the state. Ironically I would dare to say that few people around have morals as solid and integrated as mine. Of course I also have to say that in my days before dialysis when my mind was a mess I was totally immoral. I won't bore you with gritty details but I was less than rational in my actions and thoughts. Sorry about that Sandy.

I bring this up because a moral code is manadatory in life. A moral code is simply a rule set of actions to take that will enhance and continue your life. Doing immoral things has the opposite impact... they help to end life. A good example that most people would not think of is smoking. Smoking is immoral in the Objectivist ethics because it will bring negative health results in time. The same can be said for heavy drugs and heavy drinking. Even not wearing your seat belt is immoral if your life is the value to judge against.

I see the logic in this and I encourage anyone that reads this to visit http://rebirthofreason.com/Objectivism/ if you wish to learn more. I think that proper life based morals are vital to the person dying from a major illness. One might say, "Gosh.. if I am dying .. why not do what I damn well please before I go?" The problem is that if you do then you will be gone faster. While this might appeal to the christians who think there is a heaven, it is not a good plan for the rational people in the crowd. We like living and want to do more of it. I leave you to judge who has the moral code of life... and who has the moral code of death.

For a long time I had trouble seeing that I even had a life to concern over. Major illness is rough. Your world inverts. You loose the ability to see a future. Everything sucks.

In my lifetime I have researched all the major religions, all the major philosophies and most of the mystical forms available. In the end I only found one system that all locked together and centered on the one thing I have and value most... me. If you are searching for sense and sanity I offer my recent explorations as a possible path. However, whatever one chooses I think it is vitally important to have a code to follow. Without it the world spins out of control pretty fast.

Sunday March 26th, 2006
Cold. Is anyone else sick of the cold?

Spring in Tennessee this year has been strange to say the least. Right now as I write this there is a solid frost outside. The rest of the week is supposed to be warm but I guess winter had to hit one more time. Too bad the forecast did not reflect that and I neglected to pull in my herbs. Thankfully Rosemary and Sage are tough. I so want the warm weather to return.

Yesterday (Saturday) at dialysis was pretty calm. Everyone seemed really laid back for some reason. How a clinic can be quiet like that I will never know. There are moods and cycles in a dialysis clinic. If I could understand them I could write a book and be famous.

I had the exclusive joy of sitting next to Anthony yesterday. He is a patient that is loud and bothersome although harmless as the day is long. I do not know much about him but I would suspect that too many drugs in life have made his deck a few cards short of good poker. The nurses love him like a boil on their butt and deal with him accordingly. The reason I point this out is because unlike the hospital the clinic is a public space. Very public. You deal with everything that happens.... vomiting, passing out, blood leaks and loud people.

Now sometimes this also means laughter and good jokes. We often have a grand time at the clinic. Sometimes the humor is a bit dark but we all enjoy it. And occasionally the overheard gossip is rather informative. It is a strange pseudo-family to say the least. Rather a love-hate relationship of a larger nature. Honestly I think I see more of the staff and patients there than I do of my own family. And yet one feels so isolated in the chair. It is unlike anything I have experinced before.

I did pretty well overall but my blood pressure was playing like a yo-yo yesterday. I have no clue why.. somedays it just does that. It rather left me feeling washed out the rest of the day. Right up until bedtime.

Today I feel achy in the back. No doubt swollen kidneys. Just part of the game when you have PKD. It is like being kicked in the back the day before and now all you have is the ache. I could take pain pills to cover it but then I could not write or speak. Ah .. the choices we make.

I have been reading about choices in my Ayn Rand book. Also about logical and reasoning. It is an odd thing to read as you sit in the chair. There are few places more filled with evasion and altruistic thinking than a medical clinic. Everyone there that I know about is very religious and way into evasion of reality on several levels. I always found that strange since they are the most technical place going but it is true. I find it tiring some days to listen to the fantasy statements all of them make. I could tear apart everything they say several times over but what is the point? People that are evading reality on that scale are not interested in me pointing out the logical flaws in their thoughts.

It raises an interesting question: Where do I find friends? Everyone tells me that I need friendships and contact and people to depend on so I can make it through this illness. What do I do if nobody shares my values in life? One cannot be a friend if they have different values. That would be contradictory in itself. I wonder the same thing for the many addicts in 12 step programs. What does a person do if they need addiction help and are not religious?

Thankfully I do have Sandy to talk to as she shares my objective values, but one person in the entire world? My goodness that makes for a quiet life. I know there are others out there but they are rare. I just wonder how this happened... how did millions of people choose to turn away from reality?

I am talking about this because I cannot turn away from reality now. No choice. And it makes things harder when everyone around me does. It seems like no problem at first but you soon realize that nobody has a clue what you are experincing. They all have some dream of some sort they are walking around in and you simply cannot play anymore.

I find living in reality a great thing. No more lies, no illusions, no stress. Things are what they are... A is A. But it sure is a lonely place anymore. I feel like I live in the land of mental zombies. And I really hate zombies...right Amanda? :-)

7:39 PM 3/24/2006
My internet connection has been down all week on and off. I can honestly say I have felt rather isolated without any contact. In my case my phone is Vonage so that was non-functional as well. I spent much of my time reading and learning.

As you may know I have been rereading my books on Ayn Rand and her philosophy. I have realized that I missed a lot of their content when I read them before I was on dialysis. Clearly my mind was in chaos back then. She truly was a genius and created a completely integrated philosophic system of living. If everyone was taught her methods the world would advance a thousand years overnight.

The topic of interest to me of late has been emotions. I have written here before regarding my confusion over the dialysis process and not knowing how to feel. I realize now that I was in error. Ayn Rand clarifies the emotional process for us.

Emotions are automated responses based on your life experinces to this moment. Contrary to popular belief they are value judgements that have been decided on and stored in our minds. While all human emotions are the same... the cause for feeling them is not. That impluse is triggered by how you arranged the thoughts in your head. A group of people can experience the same event, but have totally different emotional responses.

Miss Rand also provides a logical process to determine your thoughts and therefore clarify the emotional response to events in your life. Excellent philosopher that she is she outlines a process of reduction to work backwards into any concept and find the connection point with reality. And of course... any concept not grounded in reality simply is hookum and should be discarded.

So what does all this long winded crap mean? It means I can now explain better why people around me are behaving so oddly. For example: There are some people at my clinic that truly hate dialysis. There is even a website ( http://www.Ihatedialysis.com ) with that negative thought in the name. I was not sure how I felt about dialysis for a time but I felt uncomfortable with saying I hated it.

By reducing this process down to primaries one can determine the source of conflict. In my case I value my life as my most important item. Without my life nothing else matters. Everything I value must be second in line because all of it is based on my life. That being said... dialysis preserves or continues that life. While the process can be difficult, it still achieves that goal. If I say that I hate dialysis then I would be saying that I hate the life I value so much. Clearly a conflict. If I instead realize that dialysis provides my life then I quickly "feel" different regarding the dialysis experience.

Now my emotions towards dialysis are in line with my thoughts. I walk into the clinic feeling good because I know this process is helping to extend my most valued possession. This is not to say I might have different feelings towards staff or my ice cup or the TV that day. The point is one needs to clearly think through all the different things we "feel" in a day. I suspect many people like myself have conflicts inside that need to be cleared out.

By clearing my thoughts and really working them out I have cleared my depression and am working towards functioning again as a real person. Sure I still have physical issues but I think now I have better tools to work with. For the first time in 7 months I think there might be a life ahead of me. Ironically all I had to do was connect my thoughts with reality in a logical way and dump all the crap and garbage of a lifetime in our society.

Too many people these days are driven by random feelings and imagined concepts. I meet a great many at clinic. Even the staff there is confused and often lost in concepts that have no base in reality... and yes.. I am pointing my finger at religion. Talk about a system of imagined concepts with no base in reality.. whoa. Small wonder these people are confused and angry all the time.

So if you are struggling with your disease I suggest you run to the book store and buy anything Ayn Rand wrote. It may be far different than you are used to, but then hey, you and I are both on borrowed time here. What do we have to loose?

8:18 AM 3/20/2006
I am in a lot of pain this morning. In fact every joint in my body is on fire. Part of that is because it is about to rain here and the barometric pressure has dropped. Part of it is because I have renal osteodystrophy, or bone disease of kidney failure which affects 90 percent of dialysis patients. It causes bones to become thin and weak or malformed and in general just to hurt a lot. They tell me it is caused by the imbalance of calcium and phosphorus once the kidneys stop managing things.

Now as you know I went to pain management a few days back. Alas, it would seem that I am not handling the new pain killers well. In fact they are making me sick to my stomach and loopy in the head. Oh.. and they are not even cutting the pain.. not even close. With the assistance of my online friends Vee Carrington and Robin Deleary as well as Medline Plus http://medlineplus.gov/ I was able to find out that both Lortab and Darvocet contain mostly tylenol and a little of the basic drug. Hydrocodone for Lortab and Codeine for Darvocet-N. And of course... hydrocodone really messes with me.

For some reason the doctor at the pain clinic sent me home with Lortab that is about 1/10th the strength of my Darvocet. I don't know if it was his error or if the transfer form from the dialysis clinic had things wrong, but I did not realize it until I was in serious pain. As you can imagine I had to go back to the Darvocet that I had remaining. Now I have the odd dilemma of calling the pain clinic and asking for another prescription. Considering the massive drug seeking paranoia there... I expect it to be a tough call. I get so tired of people being more concerned with the rules than my health or pain.

It has become clear to me that doctors in America have become almost useless. If you recall this entire situation started when my nephrologist refused to write script for any pain pills at all. I was then forced to go to a new doctor as my primary care guy and he did the same shuffle. He wrote one time and forced me to pain management. All this hand washing is getting me wet. It is beginning to look like a game of hot potato. Or a game of spread the Medicare dollars.

At first I believed the rubbish about drug seeking patients. And even now I am sure they exist, but how many of these poor devils are like me? How many of them had a bad reaction to the drugs or ran out or simply needed something a little stronger? In my case I have come face to face with my pain. In case you don't know PKD is a rather painful version of kidney disease. Mostly from the swelling of the cysts, it can really feel like you have been pummeled with a 2x4 liberally.

Add onto that my joint issues and some days I cannot move at all without crying out. Now I have the dilemma of how much do I numb myself as opposed to functioning. And, of course, how do I get the right pain killers. Over the last couple of days I have started to consider growing weed in my back yard. I have no clue how to do that but for the first time in my life I think it has merit. Could be interesting since I live right between 2 officers of the law!

On a more serious note... this issue of illness and pain is scary. It really boils down to me begging people who are not hurting for something to dull the agony I experince. I only wish I could let them feel it for an hour. I suspect they would be more swift in getting me some help. These same medical persons have been so happy to save my body with technology but now they feel uncomfortable helping me with he pain they induced. One has to remember that left alone I would be dead. Dead is not my goal but at least there was no pain involved.

I think we have a serious problem in America today. I think the desire of the religious right to have everyone suffer is seeping into places where it should not be. I know that suffering is part of their religion but why do I have to be forced to play too? And before you write to me... consider all the many situations where they blocked easing of pain. The media is full of it. Hell.. the bible is full of it. Pain and suffering seems to excite the average christian. Sick.

At this point I am seriously considering getting drunk on some whiskey and staying that way. This has several advantages over pills. First: it is probably cheaper. The big pill companies are big because they get top dollar for pain killers. Second: it tastes better. Mixed drinks or pills... hmmm. Third: I can walk into my local liquor store and buy anything I like. That is what being an adult is all about. Too bad the religious people think I am a child when it comes to pills. And the last item of course is: alcohol is legal! How odd they let one drug be legal and so many other are not. Can you say hypocrisy?

At first I worried over my liver. My kidneys are shot so only my liver matters now. Funny thing is... all the medicines they hand me are full of Tylenol... which kills your liver!! Tell me again why I beleive these people? It would seem that they are simply trying to kill me.

Honestly I have no idea where to go from here. I wrote about this experince today because I *know* I am not the only one dealing with it. I saw the crowd in the pain management clinic. I talk to the people online in the PKD lists. I also talk to the people in my dialysis clinic. Kidney disease hurts. I can only wonder when the normal people are going to wake up and realize the amount of suffering they are causing. I can only wonder when they are going to let *me* decide how to live and die.

7:31 AM 3/18/2006
I was watching CNN Headline news this morning while I ate breakfast. I like to try and eat early on dialysis days so I have time to digest a bit before I go to clinic. I was casually eating and watching with no real intent other than to be entertained while I chewed. However there was a news story this morning that caught my attention mid-bite and actually propelled me to my computer to write. Normally I avoid writing about news events because other people do it a lot and most of the stories are so boringly obvious.

Today was different though as they played a story about teens and young kids doing drugs. This story was different because the drugs being done where normal household items like whipped cream in the spray can and computer dust cleaners. Among others these aerosol items have propellants than can get the kids high. Think your kid is getting into art? Think again because Johnny and Mary are "huffing" your household spray cans.

Naturally the parents are alarmed. And of course there are many speakers making cash wailing about the dangers of this new way to get stoned to schools and other groups. However as a parent I am unconcerned. Even as a parent that has serious drugs on hand most days I am unconcerned

This situation smacks of the way America works anymore. Be it drugs or wars or stealing or Enron scamming billions. There is a breakdown in the moral code. An ethical rift if you will. Younge people doing drugs are expressing the same feelings as the workers of America who also do drugs... or drink... or smoke.. or overeat. It all relates back to a lack of morals. In a broader word: philosophy... the way one lives and acts.

Now before you say, "Gosh Jim.. you just made the point of the religious people" might I remind you that our country has been mostly religious and very christian for better than two centuries. Think about all the churches and all the religious groups both past and present. Think about the rise in violence and drugs and consider the number of TV churches that preach non-stop to millions. There is more "god" in the world now than ever before just on a sheer scale of numbers.

Clearly ( and I say this after watching another story about 3 shooting in a Denny's ) there is someting wrong in this world. How can we have more religious people than ever yet have more anger and drug abuse than ever? If one can step back for a moment I think it becomes clear. The philosphy of the Bible and the Koran and the church in general has a fatal flaw. And we are finally seeing this fatal flaw in all its glory

That fatal flaw is that all these documents try to steal the honor of being human. They call people sinners and unclean. They make rules that are impossible to uphold. They create a mind numbing play of greed and guilty. And then.. just to really top it off.. they tell you the only path to happiness is to die and go to some mystical afterlife. No joy on Earth.. no, no.. only after you die. And we wonder over the suicade rate?

With these twisted moral codes and hatred of life on Earth is it any wonder the youth of America are sniffing your Reddi-Whip to escape? I don't blame them. I see what they see.. hate and anger, failing job situations, parents divorcing as they chase some sexual whim, teachers that drone on endlessly about old events that have no importance. All things considered I am surprised they all don't explode.

What we need is a return to rationally. We need to learn and teach our children about the wonderful heritage that is human. We are not flawed and we are not sinners. We are the climax of a million generations of survivors. We are almost "god-like" in our technology. In some cases like mine we even delay death. What wonderful and heroic beings we can be. But only if we set aside moral codes that preach confusion and death. We must celerate life and become more... more rational.. more passionate.. more joyful. More objective.

I know.. I sound like a broken record. Jim and his objectivist ideas. However as you watch CNN now and in the future I want you to consider what christian morals have produced. Is it not time for something a bit more intelligent? Is it not time to grow up and set all the childish wants and whims aside? I think it is... or we are going snuff out the human spirit. And after that.. who cares if there is a heaven or hell?

5:35 PM 3/17/2006
Today was my appointment with the pain management center. Oh my.. what a trip. I will get to that in a moment.

Yesterday was pretty uneventful as dialysis days go. In fact things were totally boring until the last hour. At that point my nurses gave me Venofer ( liquid iron ) and the last shot in my Hepatitis vaccine series. Normally not a problem but I have this thing about shots and needles. I was immediately feeling faint and my BP sank like a rock. They propped me up with saline solution but I felt faint until the end of the session. Alas, the iron can drop BP too so I was fighting uphill.

I have been considering home Hemodialysis but yesterday reminded me that if I go that route I will have a monthly session of injections for all the things I now get at the clinic via the machine. Medicare will not pay for such things in the home environment so they call you back to the clinic and do it the old fasioned way. Honestly for a guy that feels about needles and shots like I do... that is strong motivation to stay at the clinic! I seriously need to reconsider that path.

On to pain management. Wow... what a scary place. Think mini-hospital with mini-beds and mini-rooms. First off I skipped my normal pain pills to make sure that there was no cross problem. Then they made me wait forever on top of the *hour* they demanded ahead of time... just in case I needed to do more paperwork or something. Let me tell you that people in the waiting room for a pain management clinic are NOT a happy lot. If any one of them had a weapon you can bet there would be blood.

So here I am naked in the stupid gown again.. in the mini-bed in the back.. waiting. Oh sure I got to answer questions for the nurse. Again. But mostly I just waited. Then at last I was wheeled, bed and all into the doctor's lair. Think mini-operating room. With all the cool toys. My immediate thought was run for the door! I mean come on.. I went for a refill on my Darvoset because my primary doctor was not wanting to get involved in pain medications. Now I am staring at a doctor in operating clothes in a mini-operating room. This is not good.

As it turned out all he did was talk. Whew... that was close. I guess the hemodialysis patient is immune from all the crazy stuff because we come with papers from the clinic. In the end we discussed that I just wanted to take the edge off and he gave me some new pills. Something called "Lortab"? Hope I spelled that right.

My big beef of course was the massive waste of time. And hey.. with my joint pain.. taking off your clothes is a major trial. The staff was so desensetized... my goodness. I think they really had no concern at all. Like walking zombies. Of course I got to sign a medication contract that allows them to treat me like a drug crazed criminal. That was lovely. I feel so special now.. Jim the Junkie.

Overall the entire experince was insane. I am sorry.. this is nuts. Our medical system has gone mad. They waste time, they treat you like cattle, they bind you to pill contracts that are totally stupid and they seem to not really care about fixing the real problem which in this case is my aching feet! What a nightmare. Once again I have to say I wonder if I made the right choice here. My journey into the medical system of America has been anything but happy.

There is a crisis in our country and it has nothing to do with sex, drugs and rock and roll. It is a crisis of ethics and morals. Somewhere along the line people stopped caring about other people as human. They decided that people were "human resources" and started using them as such. People have been taught they are meaningless and useless and simply fodder for the rich and important.


You can call me a godless heathen. You can call me a souless jerk. But I will stand by my Objectivist values until I die.. again. Ayn Rand layed out a logical system of morals and ethics that make this pathetic soup of altruistic values seem like a cesspool of waste. I would *never* consider even for a moment treating poeple like most of them treat me. I value life and human mind too much. I am disgusted at my society! For shame.. for shame.

Perhaps some day people will wake up and realize they are worth something. Maybe then the world will stop listening to leaders that see us all as numbers and resources to burn. Maybe then humans will finally embrace the path of mind and grow up. On that day all the cliches about people being of value and children being our future and mind over brawn will finally be true. Until then all I can do is live like a human and not a pathetic animal. Personally... I refuse to be treated poorly and demeaned any more.

10:15 AM 3/15/2006
Gosh... Wednesday already. Days seem to go by so fast anymore. Yesterday dialysis was uneventful for the most part. I was a little heavy in the fluid department at 5.1 kilos gained. I admit having been bad and partaking of some juices and watermelon over the weekend, but darn it was tasty. Sometimes you just have to go for it before you get crazy.

Overall I have been feeling pretty good. Things seem to have improved and leveled out a bit. That happens too as well as the bad days. One just hopes to find a good balance. I think if a person can find a bit of balance between the good days and the bad then they can make it.

The one big thing that happened at the clinic yesterday was a small accident. Not sure how it happened but a woman 20 feet from me had a venous needle pull out. Not sure if the tape slipped or if she hit the line while asleep but the resulting mess was big. While she did not loose much blood in actual fact it looked like a war zone. Blood seems to do that... looks worse than it is really. I think I am making progress with my blood issues though because I watched the entire event from my chair and really was unaffected. In the past I would have passed out cold. I cannot decide if this is a good thing or not. Is numb ever a good thing?

I participate in a few kidney related e-mail lists. You can see which ones from my Yahoo page. In response to a question regarding a women dealing with her illness and family problems I posted:

The truth is that being on dialysis is beyond the normal human understanding. There is no emotion for a person to use when you are already dead and simply borrowing time. There is no way to get people to understand (like hubby) when their lives are so threatened by this new arrangement (your illness). I think one just has to find new purpose and make a new life beyond nature and biology.

This is a really big concept to work on... emotions. Now we all have emotions but 99% of them were forged in the ancient past as shortcuts. These shortcuts allowed us to act and react to environmental stresses without taking time for cognative thought. In a way emotions or feelings are simply guides on how to think and act in a tight situation. Flash forward to current times and suddenly or emotions seem a bit behind the curve.

As I stated above... how does a person "feel" about all this? I know that I have run through all the emotions I have a couple of times and still I feel confused some days. Our technology and progress have actually left our old faithful emotions a bit useless. In the days before modern since there was no way to exist beyoond biological "death" or failure. Yet now we do this all the time. Not only for kidney patients but for heart and cancer patients too. In a way we have outlived our feelings.

Why is this even important? I think it is important for a couple of reasons. First off there is no good way to deal with what is happening to me. I should be dead by all reasonable thought so suddenly I have to function in what I call "bonus time". Since this access to life beyond biology has never existed before there is no precedent on how one should live. The second issue is other people. While they often mean well they really have no clue. They tend to say stupid things and act in odd ways around the terminally ill simply because they are trying to use emotions they know to relate to a situation that has never existed before.

Now humans are pretty adaptable but it takes effort and some time. Personally I am starting to get a grip and move forward. I was not really sure if I would ever make it, but I think I might now. In the case of others I don't think they can ever shift until they experience what I deal with.. and then they would not longer be "other people". Simply put... walk a mile in my shoes.

Every day is a challenge honestly. I have conflicted thoughts and emotions. I have really scary financial issues. And overall my PKD is slowly getting worse. But even so there may be a path forward. Once you realize that you are already dead and gone things get easier. Perhaps that is the acceptance that represents that final stage of dying? If it is then I think I am there. Either way it has become clear to me that I need to focus on me now.

I have no problem with being selfish since I don't think that is a bad word. But this is more about doing things I care about and things I enjoy. And if others don't get it.. too bad. They have no way to relate to me now so heck with it! My existence is now a product of modern technology and future thinking. I have no more interest in or time for animalistic behavior or childish emotional issues. I am outside nature's rules now and I think there is a special freedom that applies.

With that in mind I have started to reread all of Ayn Rand's works. Ironically she created a rational system of thought and philosophy years ago that suddenly seems to apply really well to my life. Her system had no room for anything but reality and indeed my life is very real. I deeply admire her logical and sane approach to life. If you have a chance to check it out I highly encourage it. http://www.aynrand.com

So where does this leave me? I think it leaves me anywhere I wish to be. Since I have no biological future then I get to be anyone or anything I desire. So for me... the path ahead is based on rational living. No more tolerance for the irrational or the mystic. No more crap... just real life.. in a real way. In a way.. true freedom. How ironic.

Today was a truly lovely day! Warm weather and things are starting to get all green. Since I was rather depressed and overall a wreck after Thursday's session Sandy took me to the Knoxville Zoo on Saturday. I honestly wanted to quit and go to the clinic no more. I was just so tired. Mentally as well as physically. Somehow stopping treatment seemed like a good idea. Just to rest at last.

So getting out and about helped quite a bit. We have a Zoo pass so it only cost the gas to get there... always an important factor for the ESRD patient. None of us have a dime to our name. Thanks to better weather and getting out I feel somewhat better today. My problems are not one bit less, but I feel more able to deal.

The mood at the clinic was happy and a bit excited today. Funny how one can sense that as you walk in and sit down. I think the fantastic weather had everyone feeling upbeat. I was not even phased by the massive $50,000 bill I opened before I left today. Ironically it was from the clinic. Are they just trying to depress me? Medicare handles 80% now, but at $25,000 a month one still racks up some costs. That first 3 months before Medicare takes over is scary. More than I can afford since I have no job. Pity that the Social Security folks do not see me as disabled. Go figure.

My session was uneventful which is nice. One of my favorite nurses stuck me yesterday day so I did not have issues with my fistula again. It was still sore and swollen but amazingly not bruised... yet. They ran my blood flow a bit lower so there was not so much pressure. This was a good idea, but also has the side effect of lowering the quality of my dialysis for that session. On the long weekend that can matter.

The real irony of this situation today was that towards the end of my session I recieved my monthly "education" which is a newsletter with a questionaire to see if I "got it". The nurses put the answer sheet in your medical file to satisfy some regulation I suppose. They are always related to dialysis in some way and also generally have a small article about some dialysis patient that is doing really well. This time it was about a fellow that is also an athelete. You can read about him here: http://www.shadireland.com/ if you like. I looked it up for you so you too could follow along.

And this is where I start going off about what I read. If you are feeling warm and fuzzy you might want to stop here because I am about to get decidely unfuzzy. The general idea of the monthly education this time was that dialysis is based on how much you get in terms of how you feel. Clearly more is better because normal kidneys run 24/7 and all the average patient gets is a bit less than 15 hours. The measurement is called Kt/V and along with your BUN tells you how well you are getting cleaned. Today for example my Kt/V was 1.43 according to my machine. That works.

What really got me going today was the story about Shad Ireland. Now I respect this man greatly. I have no beef with him at all. His achievements are fantastic. What pisses me off is the people that printed his story and shoved it in my face while I was sitting on the machine! This is exactly the reason that average people have no clue why folks on dialysis are so tired and unable to function. This riduculous hookem is meant to "inspire" the patients I suppose. The real truth is that it simply annoys them.

In my clinic there is not a soul that does not limp, use a wheelchair, take a pile of pills or feel generally unable to even make it through the day. We are a messed up bunch of people. What a surprise... that is what happens when your kidneys fail.

So here I am sitting in the chair feeling wasted and reading about this guy that has run the triathalon. At first I just felt bad. Then I started to feel angry. How rude! How positively rude to tell these poor people about some guy that does amazing things we can never do again. And the real truth is that all the people that are normal love this crap. It makes them feel less bad when confronted with illness like ours. It gives them a symbol to focus on so they can be in denial about the real issues that face the terminally ill.

Our society is full of this garbage. Think back on how often you have seen a news story about something like this or an article in the newspaper. It is very common for the people in denial about life in general to want to find the one person in a million that is doing well and make them the poster child for that cause. It makes them *feel* better. It makes them less nervous.

I get this all the time. I have nurses and doctors and average people on the street telling me to cheer up and to have hope. Clerks in stores that I have never met before try to assure me that things will get better for me. Stafff in the chiroprators office argue with me that their services will somehow miraculously cure my genetic ailment. Of course this is after I explain what dialysis is all about. Nothing like being informed before you whitewash the world, eh?

Simply put there is a great effort to never deal with reality in this country. Millions of normal people spend tons of time and money to never be aware of anything they feel uncomforatable with... and that is 90% of their lives really. This small article is jus the most recent affront to my intelligence and dignity. It happens all the time and I am getting pretty angry about it. I did not choose this disease. It struck me down when I least expected it and my life vanished. How dare these healthy and average people tell me how to feel and demand that I strive for greatness in an impossible way just so *they* can feel better!

It comes down to this: Why is the terminally ill man comforting the healthy people? How far has our society slipped when the strong and vibrant are more afraid than the dying?

9:13 PM 3/9/2006
Today has been a rough one. There has been a huge storm moving in all day. That means that I and everyone at the clinic were in pain and feeling awful. I spoke with many people there today that echoed my desire to be almost anywhere else. Everyone had to drag themselves into the clinic. I seriously considered staying home myself.

Things only got worse once I was in the chair. I did not feel bad overall but the joints were screaming. Then I realized that we had a new nurse. Nothing strikes fear into hemodialysis patients like a new nurse. In this case she was a full RN but being trained by one of the experienced nurses. Sure enough.. much to my concern.. she infiltrated my upper arm with the venous needle. So now I have a very sore left arm and a knot the size of a golf ball in my armpit. The training nurse was able to place a 3rd needle so I could dialyze, but damn.. that hurts.

Honestly I cannot figure out why nurses in general cannot seem to get IVs and fistulas handled right. I hate going to the ER and having nurses there try for an IV. It surely must be a new form of torture. I think we could solve this dilemma pretty fast by having them practice on each other for a week. That way they get the feeling of the pain and also get to suffer with their own mistakes. In this situation I got a "sorry" and I live with the after effects. Not cool in my book.

Overall it was a bad day to be messing with me. Of late I have been feeling like I just need to quit. All this pain and difficulty does not seem to be getting me anywhere. My joints still hurt and I am no closer to living like a real person. None of my goals are even within reach and each month my finances get thinner and thinner. I do not undertand why our society demands that I be stripped of everything. But that is where we are headed I guess. Why have an existance if you cannot do anything but exist? This is really just a constant loop... and it goes nowhere.

Now I have to face the reality of killing myself by stopping or finding a logic reason to continue with this painful path in a circle. Surely there must be some purpose to all this but I have yet to find it. In fact all I see is a lot of people going in a lot of circles. No wonder there are so many unhappy people out there. I realize life has patterns and many are self-repeating, but this is really surreal.

I cannot understand why humans are so content with getting nowhere for decades at a time. Some people are productive but it is a small group really. You would think others might look at that, but nooooo. 95% of the population seems to be more than happy to simply exist doing little or nothing. Don't beleive me? Ask the person next to you what they dream of as the ultimate life and I think you will find it involves doing little or nothing productive. Probably why the lottery is so popular.

As for me.. I am still searching for purpose here. Hopefully I can find something soon. Something that means something in this world. Something to make the pain worth it.

2:45 PM 3/8/2006
It has been several days since I last made an entry. Mostly I have just been tired and not able to sit at the computer very long. Another aspect is that there has been nothing notable to write about. It is springtime here in East Tennessee and that is truly wonderful, but I feel a little left behind. I want to go and do things but I feel so tired. Mostly I just open the windows and enjoy the fresh air.

I am starting to feel the negative impact of PKD and dialysis. It is a very subtle thing really. It works on your mind a little at a time. And it happens after you get past all the big, major issues like staying alive. In truth I am fine. My days are stable and I coast from day to day without much issue. I even sleep during most of dialysis now and that is great by me. Truth is... it is all so boring and that is the trouble right there.

I feel so isolated really. I spend my days at home with my daughter and Sandy when she is not at work. She works a lot now to make up for the time she spends shuttling me to the clinic. There is nobody that lives nearby that knows me or cares. Typical of modern neighborhoods. I don't get out much due to my stiffness, but when I do get out I cannot afford to really go anywhere. Nobody on dialysis can... it is too financially draining.

I have tried to find friends online via email and chat like Yahoo or MSN but they all seem interested only in sex games or trivial conversation. Now I feel isolated with a hundered people in front of me. In real life I cannot drink or smoke or party any more. Even eating out is a real challenge due to the renal diet food restrictions. Even tatking a walk is tough due to the fatigue factor.

Am I depressed? Hell yes! How could I not be? I have to figure out how to carve a life out of a situation that nobody seems to see except the kidney patient. I often joke about being biologically dead but nature has not come for me yet. In many ways this is emotionally and mentally true too. My life is not like everyone elses. Try as I might I cannot regain strength or improve my situation. I cannot be like the rest of the world and act foolish and say silly things for fun because I know better now. I can see reality all too clearly and have no desire to pretend anymore.

That seems to be the common factor in my dilemma. Too many people around me want to pretend things are not as they are in the world. They often seem to want me to pretend with them... to make them feel better I guess. Too bad it never makes me feel any better. I want so badly to do something useful with the remainder of my life but at every turn there is just more silliness, more make work or more time wasting activities. Is this the real truth behind the curtain? Is this what our society does not want us to see or realize? Are we supposed to never mention that 95% of what average people do is so pointless that they would kill themselves if they could see it?

I suspect this is so. I suspect that in truth the vast majority of people alive today are simply chsing after goals of the 5% at the top. Those people run everything now. They live like royalty and use all the rest of us to achieve that goal. It could be different really, but average people are too content to live in illusion because it feels safer. They honestly are afraid to know the truth and make decisions for themselves. This way they can blame the society or god or somebody else and never have to do anything real or meaningful. It is a childs dream.. to never grow up or be responsible.

Sounds good but life has come to a close already. I had to grow up because my time was over. And now I can see things that nobody else seems to see. Now I can see the patterns of foolish behavior that have destroyed a world. And there seems to be nothing I can say or do about it all. And anytime I try to speak to people they simply label me as tired or depressed and think I need some happy pills.

What I need is a world that can think! What I need is a life that goes somewhere. What I need is a medical association that wants to fix me instead of using me as a cash cow for as long as I will last. I look at the many websites and foundations related to bad kidneys and I see that pattern too. There are many that love this disease too much... they live on it in fact. That's just sick.

I don't have a solution here. I wish that I did. I certainly would use it. Why did I write this down then? Mostly to express to others that might read it exactly how frustrating this illness can be. To express some of the rage over dying in a way that seem more pointless than ever. And perhaps to put words on the feelings of others like me that simply could not find the words to express that loss. You know.. the life that was lost and will never come back.

How does one mourn for themselves?

9:18 AM 3/3/2006
What a great week! For some odd reason I have felt really well this week. I assume that something has changed in my kidneys. I know that with PKD things go in cycles. There are good times and bad. I was beginnning to wonder if I was ever going to hit the good cycle.

Yesterday was so different. I went to dialysis and despite being 4.4. kilos over on water I was able to rest in the chair for the first time in 6 months. 4.5 hours goes a lot faster when you are sleeping. Not to mention I was able to be awake later in the day instead of taking a nap after dialysis. Being in the clinic most of the day gets worse when you have to take a nap later. It simply wipes out the day totally.

Sandy and I are trying out yet another chiropractor. We sat through yet another orientation speech last night. We both understand and value the concept and science of chiropractic care. What we do not value is the layer of religious doctrine that every single chiropractor in the area seems to believe is more important than the healing services rendered. As an atheist I find this very annoying. I just want to purchase the services sans sermon. If I wanted to find god I would look in a church.

Unfortunately in East Tennessee it seems there is almost no respite from the overwhelming press of religious crap. I can understand this when speaking of ignorant people in society. To them everything in life can be seen as some form of magic beyond comprehension. What horrifies me is the number of supposedly intelligent and highly educated professionals that spout this hookum as well. How can an educated person believe in things that have no evidence at all? And just because millions believe it does not make it so. I refer you to the idea that the world was flat.

Overall I do not mind personal beliefs. What a person thinks or believes is of no interest or concern to me. However I think we can all relate to having a set of beliefs shoved onto us. In this case my choices for a doctor are run over. There are other situations too. No beer on Sunday comes to mind. Many of the laws about so called "morality". The list goes on.

Why is this important? I think one has no further to look than the current war in Iraq for that answer. No matter how you feel about this issue everyone will agree that it is really a clash of culture and belief. Alas, this clash of opinions and ideas has escalated into violence and killing. And this is what concerns me about my little corner of the world. How long before my life is of no concern because someone else has a different belief? How long before my ability to work and play and live and purchase is removed or lessened simply because my views on a diety do not match everyone elses?

Humanity has been down this road many times. You would think we would learn. You would think we could understand that as long as the other guy is not physically intruding into our lives it matters little how they live. But no.. there are still millions that desire power and control. And indeed that is the whole game right there. Control. Perhaps some day humans will grow up and learn that control of others and reality is not possible. Let me share a truth with you and help you to save some time. Time better spent on more productive enterprises. Ready? Here it is...

The real truth is that we only control ourselves. Ponder that one for awhile....

9:06 AM 3/1/2006
Yesterday was almost perfect! Yes, I know... a pretty amazing statement coming from me but it is true. I was rather amazed because I was pretty ill over the weekend. I have had some very intense heartburn and have been unable to locate the trouble.

Suddenly Tuesday comes and I feel fine. PKD is like that sometimes. One can feel terrible for days on end and then suddenly you feel great. On the other side of the coin... you can feel great and suddenly slip to awful in short order too. I realize as I look back over the years of my life that this pattern has happened many times along the way. There are numerous occasions when I simply felt terrible and had no clue as to why. It has really messed with my life.

But yesterday was almost perfect. I went to clinic, sailed through the treatment, and then went to a doctors appointment and shopping with Sandy. No nap required. Amazing. I felt great. Now if I can simply figure out what went right... then I can do it again. Clearly when good days happen I want to figure it out so I can reproduce it over and over.

I think some of the credit should go to the weather here in East Tennessee. For all practical purposes it feels like spring. The birds are singing and I have windows open. There is no greater lift for the spirits than fresh spring air and sunshine! It really helps when you are in the home stretch to feel and experince new beginnings. I always wondered when I was younger why old people loved little kids so much. Now I know. I cannot help but smile at the wide-eyed wonder of toddlers I see out in public. Loosing that wonder is perhaps the greatest loss in life.

Sometimes I think they need to cast out the rules at the clinic and get some pets. A couple of cats and dogs would be great. I think the patients would love them. A few finches in cages here and there would be pleasing too. And maybe a fish tank in the lobby? My point is that the clinic seems too sterile at times. When life is fading it is nice to be reminded that overall life goes on.

I find myself thinking about that a lot of late. Anyone reading this blog will know that I often question the quality and purpose of my life. I think this is a good thing really. People need to know why they do what they do. Clearly there is enough mindless activity in this country to go around. We need more action based on purpose for sure.

On days like today and yesterday life seems better somehow. Even if I have no purpose anymore it seems easier to just exist. More pleasureable really. Life seems possible when life is all around. No wonder everyone I know hates the hospital... there is little life there. Death often stalks the halls.

My only regret is that my joints and feet have me stuck for the most part. I would so love to get out and play in the world. Even so I will do all I can to be outside today... even if all I can do is sit there. I have to wonder about my upcoming appointment with "pain management". Personally I would like them to eliminate my pain.. not manage it. However, if I am lucky they can help me to have less joint pain and perhaps I can once again move around in the world. I would like that. I would immediately go to the zoo. I really love the zoo, but it takes a lot of walking.

Since my thoughts today are wandering about... I shall speak on the chiropractor's office I went to last night. I like chiropractors. They help one to feel better without all the pills and with a comforting lack of "sharp objects". I am not a fan of sharp things. For that matter... who is?

My gripe is the in your face religious blast one gets here. All of the chiropractors in this area seem to share this obsession. It is a bit new for me really... I have had experince with chiropractic all my life and only here have I seen this overwhelming religious connection to the practice. I find it annoying and rather rude. It also seems like such a sellout. It comes off as a quick and cheap way to appeal to the locals since most people here is the South are very religious. Spout a few words and paint some bible quotes on the wall and you are instantly a "good" person. Not!

It must be so nice to be able to get acceptance based on keywords or phrases rather than excellence. And I see it everywhere here. Businesses display all manner of christian symbols and words to lure the people in and take their money. The funny part is that if all the businesses say they are religious then they cancel out the benefit. At that point you are back to square one again. Saying you are a "godly" business is no different than saying " we are the best" business. How can this be believed?

Want another example? Walk into our court system. There are oaths taken and yet "godly" people still lie on the stand. Another favorite example of mine is our money. Our money says "In god we trust". Clearly in America this statement cannot be true. We have too many diverse peoples for this to be true. I know that I for one place no trust in any diety. Whatever happened to seperation of church and state? Do we really want the church to be the state again? It has happened before... they called it "The Dark Ages".

Okay.. so why am I ranting about this stuff? Why not let it go and say nothing since it hurts no one? I think it is harmful in point of fact. I think any time you have a group of people making decisions for your life based on a philosophy you do not hold you are in trouble. I have learned this first hand from my medical experiences. They often make decisions based on what they feel is right rather than what I want or need. Such arrogance!

Our founding fathers were on the right track. If a person does not have the freedom to choose then they cannot be free in any sense of the word. It was called "Life, Liberty and the Pursuit of Happiness". Not guarantee, but pursuit of happiness. It also did not say enforced happiness as according to the Pope or the Dali Lama or the local Minister.

If being sick has taught me nothing else it has taught me that personal freedom of choice is the single most valuable factor in life. Once that is taken or compromised we have lost much. It matters not whether it is a rule or a law or a lie that shades reality... it is all a loss of freedom. When I can no longer call the shots in my life, then it is clear I no longer have a life.

So be careful who you vote for or who you follow. You may wake up one day and find you lost something very precious indeed.

1:27 PM 2/24/2006
Yesterday at the clinic was really strange. I knew when I walked in that something was wrong. Sure enough it was a day of people feeling bad and nurses going crazy from the overload. Some people even left on a stretcher via ambulance. Most like myself simply felt poor for some time. I always wonder about days like that since there seems to be no real reason for it. Some days at the clinic are simply quiet and calm. There seems to be no pattern really that I can detect. Perhaps it was the moon phase? Who knows.

Due to the frenzy of the day I was left alone mostly. I was feeling sick from being overloaded with toxins but overall I was not in need of much. I got hooked up and proceeded to dialyize in peace in my corner. I have a nice chair in the corner by the window. More on the window in a minute. It generally takes me about 2 hours on the machine before that sense of "yuck" goes away. Until then I am queasy and grumpy and desire to be somewhere else.

TV was terrible and I spent my time looking around and watching the world. I also spent time looking out of my window. The weather here is getting nicer and the birds are really getting active. There has been a nest on the rain spout of the building for many months but today for the first time... there was a bird. I would guess it to be a female robin. She tried out the nest for size and then flew away, most likely to gather more materials or to choose among the posturing males on the lawn nearby.

As I watched the bird and then the clinic business I was struck by an understanding. In fact I was so struck by it that the experience was more like being hit broadside. As I watched the bird and the play of nature and its cycles and then compared to the clinic and myself I realized that I was well outside the normal "rules of nature".

Now for those of you that do not live close enough to me to hear me rant all the time I define "rules of nature" as the operating functions of the planet minus our intelligence and messing. The birds and animals follow these rules as does the seasons and plants and almost all things of which I am aware. Humans on the other hand have done something unique in all of history... we ignore many of the rules!

This came to me as I realized that my entire "life" now is artificial. I exist only because of human technology all around me. I am like some sort of futuristic, sci-fi character that must "renew" his body every couple of days or he dies. Everything in the dialysis clinic is man-made... every single inch of it. Every tube, every medical supply, even the saline solution is highly processed and refined... despite being simply salt water in essence.

I have been feeling somewhat depressed of late. Or so the sysmptoms tell me. In truth I think what has happened is that I feel very removed from the world. How can a person not feel depressed when they realize that they are no longer part of the living world? And it is very true... without massive technology I would be dead in a couple of weeks. I no longer belong to th natural world. Not even a little! Oh sure my body was once part of it, but nature cancelled my contract 6 months ago. Even my diet has changed into things which are not really natural anymore. In fact... if I eat too many natural things I overload and need help. Potassium comes to mind.

This came as quite a shock to me when I thought about the implications. There was a time in my life when I lived in tune with nature as much as I could. I loved the forest and spending time doing things outside. I tried to eat as many natural things as I could and early on my family even raised their own animals. We even used wood to heat our home... wood collected from our chunk of forest.

As I considered my situation I realized that I truly am beyond nature now. Totally. This leads to interesting philosophical questions: "What is my purpose?" "Why am I still here?" "Am I alive... or something else?" "How should I use my time now?" "Is there a point to all of this?" Can anyone on dialysis every really say they have not considered one or more of these questions?

We sit in the chair day after day maintaining our bodies. But what of our minds? Who have we become now? From a purely biological view a person with PKD is a dead end. Not only am I now biologically dead, but I also may have passed this slow death onto my child. Genetically this is a disaster since the goal of life on this planet is to improve and reproduce that improvement. That is what evolution does... it works slowly to make the best organism going for the environment right now.

With this criteria in mind... I failed. In fact I am such a failure biolgically that I am actually dead and need tons of technology to still be here. Nature called me home and like an errant youngster I ignored the call and ran off to play some more. In time nature will come to find me like my mother did so many years ago when I would not come in for the night on time.

Now that I am very clear on how far outside the "game" I really am, I have to grapple with the meaning of my life. Or at least this existence I now have beyond my life, since my real life ended already. There is a certain sense of freedom for sure. I am not bound by most rules of nature. There is also a scary factor because I know I am being defiant of nature and nobody does that for long. And since I am not in the "game" I also have to manage my own body because the natural balance of my system is long gone. It is major work.. I take many pills to try to manage things.

At this point I am not sure what to do actually. Do I continue to exist? I cannot work anymore so that is out. In fact most of my old activities are gone now. I want to continue as a person but is that real or just my ego begging? Is there any point to my continuing when one considers the pain and the fatigue and let us not forget the amazing cost of it all. I am consuming resources at an alarming rate. That is another violation of natures rules... taking what is not yours.

However here I have to ponder on human society. Are we not all ignoring natures rules daily? We are for the most part well distanced from the natural world. Very few members of my society are any less artificial than I am in that sense. Despite this fact many people still default to "animal mode" when dealing with daily matters. I think this is the prime reason there is so much strife in the world today. Humans as a rule have taken over the management of their lives yet they do not realize it. We no longer live in harmony with our planet at all. That has not happened in tens of thousands of years. The hairy hominids got "uppity"!

And yet we are so rooted in our evolution. I see this in mating rituals and in food problems. You can see it in wars and conflicts around the globe. We no longer live in the jungle but many people act like they do. Almost every technology we posess is eventually corrupted into use for mindless activity... for escapism. We could be almost god-like in our power of mind and efforts.... yet we sadly grovel like cavemen in our daily lives. We need to grow up or we need to go back. And I would dare to speculate we don't really want to go back. But most do not desire to think either!

So now what? I do not know. Just because I can see the dilemma does not mean I know the answer. I do know I need to find one. I can easliy say that my will to live.. to continue on... is fading. It all seems so pointless. I am no longer part of a world that I could not affect when I *was* a part of it.

This is an important question for me, but it is important for the normal, well people too. What is your pupose in life and is it real? Or do you simply exist in a loop of your own making? Or worse... do you exist to serve others while you slowly die away? What is the purpose of life?

What is the purpose of an individual? What do I do now....

12:00 PM 2/22/2006
I was watching TV today with my daughter Amanda ( she is almost 18 ). We stumbled across a program on A&E called "Inside Polygamy". It was an interesting program to say the least. I was curious since I have studied all manner of relationships and I was also curious because it was a group of Mormons and my family members contain a few Mormons. Let me say for the record that I am not a Mormon... nor anything else for that matter.

As the program went along it was clear that the reporting was a bit biased. I often come across this problem no matter the content of the report. Reporters often decide on a view point long before the facts come in to the report. This show was not really different. There was a clear bias against multiple marriages or relationships.

I think this is unfortunate because most of the corruption and abuse mentioned in the report was the fringe group of the Mormon church. I was struck over and over by the irrational nature of their actions and beliefs. Child abuse, incest and all kinds of silly rules that seemed to be only for the power and control. Now I think the Mormon church is pretty much insane as it is, but this extreme branch makes them look totally normal.

The real pity here is that the concept of multiple marriages, or as I prefer, multiple relationships has a biological past that is as old as humans. There is nothing "wrong" or "odd" about the idea. Basically it comes from the ancient past when natures path of evolution forged humans. We can often see this pattern in mammals in nature. There are males that battle for space and power. Once a victor is established that "alpha male" aquires several females and creates a family group.

There is nothing wrong with this idea as it supports the strong males and cares for the strong females. I am sure this pattern worked for a very long time until civilization started to change things. I would imagine that as populations increased there was a demand for more females by the males that were excluded from having a famliy or mate. Eventually one can predict that something would give.

In my personal opinion this change was modern christian monogamy. If there was ever a better example of weak males grabbing onto available females and dividing the spoils amongst themselves I cannot imagine it. The funny thing is that the people on this TV show that were against polygamy often echoed just that since none of their other arguements held water. Somewhere in the background there was a constant scream of " I want mine too!"

I have often considered how well society would work if we could turn back time and subtract monogamy. I can imagine well balanced family groups with love and support for all the members. I can imagine resources shared in a functional way for the benefit of the family. If you think of it for a time without all the crap of the church beliefs crammed into it you can imagine a happy world of functional people.

And just to balance things out here... one can imagine the same of rational relationships based on monogamy. While I consider this path somewhat limited in scope it still would work because of the rational minds involved. What is becoming clear is that only rational thinking with an eye to the past and our biology within can lead us into a sensible future.

Since this is my blog where I get to rant and imagine out loud I invite you to pause and consider ideas that you may have never considered before. Try to mentally simulate the world in new ways and then let me know what you think. That's what comments are for...

11:41 AM 2/22/2006
Clearly I need to work harder on gettting to the computer! I had intended to do daily entries here but honestly the fatigue I have been feeling has me sidelined. Mix in the cold weather and I am done. Today is once again cloudy and gray but at least the weather is warming a bit.

My primary care physician prescribed a new treatment for my gout. I started taking it last Saturday. The drug is called Colchicine. I was to take it every 2 hours until my feet improved. I did so even while on the dialysis machine. It is a very tiny pill.. almost hard to hold it is so small.

Things went fine until that evening. I guess at some point my system overloaded because I found myself puking in the bathroom. This is a side effect and I was not really surprised. I must say that I do hate vomiting. Even when you let it happen it feels like you have been turned inside out. My eyes and face were all red and I think I pulled a muscle in my right side. Not a fun way to finish the day.

Since then I have been trying to recover. I think I am finally feeling better now. My feet improved and I could walk better but what a trade-off. I am now waiting to try it again until I have had a couple of sessions on the machine to clean up again. Perhaps again on Saturday? I want to choose a day when Sandy is around to help me if things go wrong again.

Since Saturday I have been simply existing. It all seems like a dream state sometimes. Wake early, eat something, sit on the machine or at home on the couch. Rest, eat, do it all again. Being sick was never my forte to be sure. That is the one major down side to dialysis I have found so far... the fatigue. I am always tired. Even in the morning after resting all night I am tired. Sometimes fixing food wears me out so much I can barely eat the food I just prepared.

I am looking forward to spring days. I hope the longer days and warmer temperatures will help me to gain some energy. I would love to be able to go for walks in the spring. Let's hope the foot trouble resolves by then.

9:09 AM 2/17/2006
Wow.. Friday already! Where has the time gone? Between dialysis and feeling hung over on the in between days I think I lost a week somewhere.

I did have an excellent doctor's appointment on Wednesday. My new doctor is a regular M.D. and will be my new primary care physician. I like the new doctor and he is very close to my home which is nice. I was particularly glad when he renewed my prescription for Darvoset so I could function a bit. He also enlightened me to a process that Sandy had also explained. Sandy is a claims adjuster for insurance policies on truckers.

This process involves getting prescriptions for drugs from many doctors for the same injury. Being a person that avoided doctors and pills of any type I was a bit surprised by this idea. It also explains why all my doctors and medical team members seem to treat me like a criminal. I guess there are so many people faking that they assume everyone is an addict or a criminal selling the pills on the street.

Being an objectivist philosophically I found the entire matter annoying. As usual I find my life has been comprimised by people that are unable to be rational. It generally amazes me how quickly the philosophy which supports "reality is what I make it" turns people into escapists. And clearly that is the whole point here.. to escape from the reality they have created. Seems like it would be easier to simply change the reality rather than run away from something of their own making.

My approach to life is to take reality as it comes. I would be the first to say that some days this can be really harsh. But most of the time it makes life so much easier. Things are what they are.. nothing more. One learns to deal with it and move on. It saves me a great deal of emotional upset.

Translated to drugs this puts me squarely in the camp of the people that think drugs are just tools. I also think it is a personal decision between you and your health care provider. Considering the poor job the government has done with drugs in general I think they should butt out. The insane phobia about drugs in America is just foolish. But one can certainly see the effects of bad thinking on the public.

We see people addicted to horrible compounds now in an ever increasing effort to escape the stress of the day. We also see people spending insane amounts of money for pills or illegal drugs. Sometimes the legal version is even more expensive! As a person that takes legal prescriptions to control symptoms of a rather nasty disease I find it all a bother.

Because in my mind that is the entire point here: A person should use drugs to control or assist a physical problem that is basically broken. If you are a healthy person taking drugs you are simply an idiot. There is no need for that if you live your life in a rational way.

To carry the idea further we could talk about guns. Simply a defensive tool. We could talk about kitchen knives.. another tool, but often used for irrational things. Almost anything can be abused if you are irrational.

Perhaps what we need is a single law against irrational behavior. Imagine the court time we could save?! I would dare to say however that there would be few people left on the streets! All of them would be in jail for behaving in an irrational manner. I know in my area there would be hardly anyone left.

I could go on for a long time on this thought, but I won't. Let me just suggest that anyone reading this consider their own behavior and consider if it is self destructive and therefore irrational or is it working for you? If you can say your life is not going right... why are you living it?

Time for a change.

7:10 AM 2/12/2006
More snow and cold today in Tennessee. It appears winter is finally here. Ironically I have seen some green shoots of bulb flowers poking up out of the ground near my house. Winter in the South is not a real issue. More like a temporary rest from the warmth.

I must admit to being very angry yesterday. I did not start out that way, but sure got there in time. You see it was snowing a bit yesterday morning as I got ready for another day of dialysis. It was lovely but honestly it was melting pretty fast on the streets. No threat at all. However the powers that be at my clinic decided to run "snow hours".

This roughly translates to get everyone on the machine as early as possible and only run 3 hours no matter who you are or how long you normally run. In theory this sounds good. One can understand that some people are elderly and some live a good distance away from the clinic. Roads here can get ugly in the bad weather.

Too bad there was no bad weather. They called me in early and let me off late but there were others that were going to be there many hours after I left. Clearly I could have done my normal time with no concerns. Besides... I only live 20 minutes from the clinic. What became more than clear to me, once again, was that my health was never a primary concern.

Selfish: Noun: Concerned chiefly or only with oneself. Yes, I looked it up to get a good definition. Now mind you I do not think being selfish is a bad thing. Everyone should be concerned with their own welfare. Anything else is just plain stupid. The problem comes in a broader picture when we deal with others. If you are a nurse or caregiver and you get paid to care for patients then it stands to reason you are being selfish if you take good care of those patients. Let's face it.. if they die then you have less to do and make less money.

I bring this up because it was clear that the staff of my clinic was more concerned with getting home than my long term health. This often happens on snow days and other events like holidays. People get into the emotions and forget the work that should be done. How infantile! Can we not focus a moment and see the results of this set of actions?

I think the part that is most disgusting is that the average person doing this would be shocked by my suggestion. They would howl in anger that I was so wrong. Yet I have seen this behavior so many times in my 42 years. Let's be honest here. People hate their jobs and their lives and they will do *anything* to escape it.

And that includes hurting others.

I am now on a long weekend and will not go back until Tuesday. Nevermind that this schedule is again for the clinic and not me. I would do better on an every other day rotation. I now have to manage my intake with 1.5 hours less cleaning. Will I be sick by Tuesday? Possibly. Will they really care? Not likely. Are you beginning to see why I was angry?

So what is the point here? Why am I ranting? What burr is up Jim's butt today? Simply this: Altruism is a lie!

A big, fat, stinking, noxious lie that hurts and harms and destroys. Every person is concerned for their own well being. Why is everyone so afraid to admit this fact? Why is everyone so afraid to be seen doing what is right for them? There is nothing worse than a liar that tries to make you think they care about you. We see this in dating, we see this in politics and we see this in medical fields.

Who among us actually thinks that a doctor or lawyer is trying to help you out of personal concern for you? Does a store clerk care if you live or die? Waiter? Janitors? I think you get the idea.

I propose a return to sanity. I propose a return to being "selfish" in the true spirit of the word: being concerned for ones own welfare. Ironically I am not the first to propose this idea. Ayn Rand the novelist also suggeted this idea back in 1940. She recognized the false nature of sacrifice and doing for others. She realized and wrote about the concept of being selfish as a good thing. And it good clear thinking too.

Look around your life and see how many times each day you are assaulted by people pretending to "help" you and how often they are simply trying to get wha they need. Is this a bad thing? Goodness no! Is it time to be honest about wanting what we want? Goodness yes!

When we are totally honest in life we allow others to make choices. Now we may hear no every now and then, but that's life. It means we get to say no too. Such power! But lies and illusions steal choice. They cloud reality and create pain. And in the end they blow up too. Why not just live honestly and speak the truth. We could all benefit.

As a PKD patient I would like this very much. I get so tired of the lies and the false "happy". I get so tired of people trying to tell me how to feel and trying to falsify reality for me. Give it up! I know the truth and I live with it. Every day. Come on... like sugar coating things makes the pain any less? I want my doctors and nurse to be straight with me. I am an adult thank you. I want the truth so I can make decisions. And there we have the real truth.... did you catch it?

Why do people lie? It is a big question... think about it for a moment. People lie to prevent others from making proper decisions. I think I need some big, ponderous music here... just for effect. Think about all the times in your life when a lie caused you to do or say something that another person wanted you to do or say.

This can be big like a fraud over money or small over things like a fake compliment. It is always about manipulating reality for a few minutes. Other than small children... has this ever worked?? I think not. I think the average person knows damn good and well that lies are just that.

So today I challenge you. Speak only the truth as you see it for 24 hours. See what happens. I dare you. And ask for the truth in return. I dare you. Imagine the power... imagine the reality.

5:32 AM 2/10/2006
I awoke early today. Is 4 am early? It seems foolish. Even chickens are still sleeping! My kidneys are hurting today. I am sure that was the trouble. I just could not get comfortable in the bed. So I got up, let the dog out and came to the computer to read e-mail.

It is chilly this morning. Not like yesterday morning when I awoke to 3 inches of snow. It was really pretty. Snow here in the southern regions only lasts a day though. It made for a nice view out the window at the clinic. It was, however, all gone by the time I got out of the chair. Oh well.

A minor correction: My dialyizer is a Polyflux 170H. I misspoke in an earlier post here. Teach me to read upside down huh? I can still say the darn thing wipes me out. I rested yesterday for 2 hours and then went to bed early too. Dialysis day has become something of a blur.

I do remember that we did blood tests yesterday. I am looking forward to that so I can adjust my diet a bit. I have been taking 4 Renagel to bind the phosphorus in my system. I was on 3 each meal and the 4th one gives me just a bit of nausea. If the numbers don't change then I am going back to 3. No sense in feeling bad for no change.

I have been wrestling with my joint pain a great deal of late. I have arthritis from the kidney failure. Oh the joy! My trouble is that nobody at the clinic seems to give a damn. They suggest another doctor for that. This makes no sense to me since my joints are a side effect of the kidney failure. If the nephrologist has no solution... then what makes him think another doctor has a clue?

I have been taking Darvoset for some gout pain as well. That helps with the joints but now I am out and nobody wants to write a new prescription. It must be nice to tell people that they do not hurt as much as they think! I wish I could transfer my pain to the medical staff for a day and enlighten them a bit. On a rainy day I can barely move. The clinic wants to feed me Tylenol. Yeah, right. Like that helps.

I see this as a larger problem in our culture. There are some people that simply are not going to get better. I am one of them. And yet our government and doctors seem to think easing pain is a cheat of some type. I hear all about addictions and drug are scary. First off.. I am not addicted. Second... who the hell cares?! Folks.. I am dying here.. I have a terminal disease that is killing me.. for the second time! Geez... would the world be a worse place if I took a few pain pills? It is not like it will destroy my life.

I don't want to be a zombie. I just want to ease some joint and kidney pain. You try and sit in a recliner for 4.5 hours with joint pain. At the end of dialysis I can barely stand up. I am so tired of the conservatives of the world trying to tell me how to feel. What is it with the "god fearing" folk that makes them like pain so well? Personally.. I am getting a bit tired of the pain myself.

I spent 42 years clean and sober. Okay so college was a few drunken days but overall not even an aspirin. Now I hurt and I need a few pills to ease the pain now and then. I am sorry.. I just don't see this as a crime. Am I supposed to be alive and in constant pain? If so... why? What would be the point in that? Is their god such a tight ass that it needs me to feel pain to follow the rules? What crap.

What we have here is nature telling me I have made a mistake. That's what pain is folks.. a warning. You are doing something that will end in death. In my case I already died thank you so I am getting a warning that is over played. There is nothing I can do now about the pain. I cannot fix this problem. The warning is correct. Nature does not undertand that I am not dead yet. I have broken the rules. Humans are good at that really. WE break rules of nature all the time.

The only catch is that then we are in charge. Be careful what you wish for.. you might have to manage it yourself. There is no crime in the terminally ill wanting to feel a bit of comfort in their remaining days. None. Now if we could just get the doctors and congress to brighten up a bit.

I guess I could take up booze? Both groups seem to like that drug!

7:55 PM 2/8/2006
Money, money, money. No... I am not listening to Pink Floyd. I am reading my mail. Yes, I get some interesting bills in the mail these days. Let me share a few thoughts with you regarding them. Yeah.. here comes another rant.

Let me start with a recap of my timeline. I was ill for a long time without knowing why. I finally went to the ER on August 25th, 2005. I was in the University of Tennessee hospital for exactly a week. After that I went to the DCI clinic where I now do hemodialysis each week.

My hospital stay cost me $35,000 right off the top. I know this because a young woman with a pasted smile came to my room and asked me how I was going to pay.. cash or charge? I think my laughing annoyed her. I know that you too keep that kind of money on hand for such things... right?

After I came home from the hospital I started to receive bills from all the doctors and xray folks that tended to me as well. Follow that with surgeons and "happy gas" people.

Today I received another round of demands and a bill from my dialysis clinic too. I don't get many of those really.. probably to avoid heart attacks among the patients. My medicare started once I went on dialysis but there is a 90 day wait period for coverage. Cute! Funny how that 90 days is exactly when all the major bills come streaming in. My coverage started on November 1st, 2005.

According to the bill in my hand I now owe the clinic just shy of $50,000. The hospital and doctors probably add up to another $45,000 or so. And then there are the medications like Renagel that is $500 a month, etc.

Now I do have a point here. I am not just ranting and whining. Think about this for a moment. In raw economic terms: Am I worth $100,000? How about $300,000? How about $500,000? What is my life worth to my society? To my family? To me?

The primary reason I did not go to the doctor earlier was lack of money. It would seem my concern was well founded. And yet now.. due to the greed and insanity of the medical establishments I am right back in the same place again. I cannot afford to be sick. Only now that being sick is a fact of my life... I cannot afford to be alive either.

I think the financial impact of Polycystic Kidney Disease is hushed up. I think that is a crime! My life was trashed by this ailment. Jobs lost due to feeling bad. Bad financial decisions because I was so agitated. There is a trail that stopped when I got help. It is clear to see. I think our society needs to rethink this one for sure. What is a life worth? We often parrot the words "any amount", but is that true?

As a person with PKD I feel great stress over this financial burden on my family. I cannot pay it to be sure... nobody could. I could have never generated enough money in my life to pay for all this. Our society is being forced to pay for it, but that just makes me a dependent. A beggar. Do you want to pay for my illness? Our would you rather take a trip or pay for college for your kids?

It seems very wrong to me to take the money from productive people via taxes ( ala point of a gun ) and fund my illness. Worse all that is really happening is that the medical people are getting rich. I never see this money.. in fact.. I am dirt poor. I have to worry over food. Meanwhile they are soaking us for millions. I have become a cash cow. The horror!

This entry ties in with the earlier one regarding quality and when is it all too much? What our society needs is to turn away from altruism and need and get back to capitalism. Let me earn money in the right way. Let the medical people charge what they will.. and discover that nobody will pay them millions. A true capitalist society returns choice to life. And for the PKD patient this seems like a truly important thing. I hate feeling weak and like a beggar. I hate asking for help all the time. I hate the fact that normal people talk about the wretched sick and poor.. and they mean me!

Nobody wants to talk about this issue. Nobody wants to feel bad about it. The truth is that nobody wants to define the value of life. Any life. They want to pretend that mere existence is enough to make you worthy. Sorry.. nature has different rules. Survival of the fittest is not just words to me anymore. I see it now.. it means the strong do well and the foolish and the weak don't. And it challenges the philosophy we humans hold near and dear.

So what is a life worth? It is a good question to ponder. Let me know how you do.

12:28 PM 2/8/2006
I am a bit late on the blog entries for today. Well.. not for today but for yesterday. It is around noon as I write this entry. I mention this because I wanted to write all day yesterday but honestly I was so loopy. I am finding my dialysis days increasingly difficult because of the state of my body during those days. Since the use of the new dialyizers at the clinic I find that my blood pressure runs low the entire session. Not enough to pass out or feel pain... just enough to put me in a half haze for 4.5 hours.

On the bright side this makes the time pass better and I can say that feeling half "stoned" during dialysis is pretty good. Normally one feels a bit restless after 3 hours or so. Sitting in a recliner half the day sounds good until you do it a few times. The down side to this process is that I cannot read or listen to music or write stuff in a notebook. If I had a laptop I could probably not type on that either. Even watching TV gets a little strange as I miss small "chunks" of time as I drift in and out mentally.

I come back to life at the end of the treatment when the reinfusion happens. I get back my blood that was out in the machine and half a kilo of saline solution to boot. That brings me up to about normal pressure again, but then i just feel washed out. Who am I kidding? I feel like a herd of wild yaks ran over me! I have never felt fatigue to this degree before.

After dialysis I go home and crash for another 2 hours or so in the bed. After that I finally eat something and take the next round of pills. While I feel much better having removed so many toxins from my system I also guarantee that dialysis day is a wash. A little TV in the evening and that's it for me.

Overall this is not much of a dilemma... who would not trade 3 bad days a week for 4 good ones as opposed to a body bag? My problem comes from the point I was making in this entry originally... it is now afternoon... the next day. This feeling of washed out is starting to extend into the next day. Now there is generally breakfast and a nap in the morning.

This scares me a bit. The philosophy of my life has always been about the quality as opposed to the quantity. I am not afraid to die if I lived well. I think many with this ailment feel this way too. We all know there is an end to life for everyone and it all comes down to how well you lived and what you got to do in your time. I like to think of it as a balance scale with 2 bowls. Quality in one and quantity in the other.

If my days are being chipped away by my fatigue then I am not getting as much quality in the bargain. This equation starts to get ugly as you factor in the cost of dialysis and the pain that just comes with it. This is not an easy process by any means. It is also really hard on family members and society in general if you trace out the process a bit.

One thing that is slightly different about having renal failure as opossed to other ailments is that we have to take major actions to stay alive. If we take no action then we have only a short time before nature reclaims us. Having your kidneys fail is a rather clear message that your time is up. This gives all kidney patients a "quit" button. Push come to shove we can call it quits at our own choice. This power of choice is the key to most of our concerns and fears. We can stop... any time we desire.

So all boiled down it becomes a simple question for the renal patient: Have I had enough? A normal person cannot consider this question in this way. For them it takes real effort to terminate life. The recent battle over assisted suicide in Oregon is a case in point.

So I find my thoughts wandering into the "Have I had enough?" question. It is not about being gloomy or morbid. For me it is about quality of life. It is about actually having a life rather than simply existing. It is about choosing to live even with the fatigue and the pain and the fear and the pills and the cost and all the rest. Have I had enough? Am I ready to be no more? Forever?

At this point I don't think so. There are many negatives, but there are also some positives. And I have not even made it 6 months yet. I would have to say that the first 6 months are hard. Really hard. Oh my goodness hard. Harder than anything I ever dreamed. Hard enough that some days you want to quit.

Sandy suggests that I wait for a time yet. She is fully aware of my feelings and dilemma. She also respects my ability to make that most difficult choice. And she is the one person after 20 years that will loose the most if I ask and answer "Have I had enough?" in a negative way. And I tend to agree.. I should wait... for now.

Life is about the choices we make with the cards we are dealt. I have realized that my hand was not too pretty. And in the poker table of life I honestly ended up folding and loosing the pot. Now I suddenly have a second chance to make a few things right before I go. I think that is worth some pain and anguish. Because life is all about things that we cannot keep other than in memory. The hugs and the moments we remember. The small things that mean so much.

Have I had enough? No... not yet.

Cold, snowy and gray today. I am often amazed at how fast the Tennessee weather can change. I rather like it but one needs to be prepared.

I awoke early today. I suspect that my BP medicines wear off in the night and by early morning my body thinks it is running a marathon again. No matter... I just get up and then rest again later when the new set of pills hits me. The see-saw effect can be hard to deal with some days. On the upside: it beats being angry with rage all the time just from high BP.

Yesterday was a very slow day at the clinic. Little to nothing on TV and for some reason Saturday is just a slow day there. I suspect because the staff is minimal. They do what they have to do, but not much else. That stuff gets done in the normal week. My clinic is very "traditional" in terms of its hours of operation.

Once again I was very wiped out after the treatment. The new H170L dialyizers are really something. The staff loves them because they save time by being disposable. I like the overall effect but the immediate impact is pretty harsh. I spend my time feeling really loopy. And then the rest of the day is all about resting.

Some people responded to my last message regarding working on dialysis. I hope that my future will also be possible like theirs. I really miss my work. It seems like such a tragedy to spend my second chance at life watching TV and resting all the time. Why be alive if you never achieve anything?

I am endlessly horrified at the attitude of the normal people around me. They live in this illusion that they have all the time in the world to do whatever. Fools! They do not realize that life is so valueable and they do things everyday that actually move them closer to death with no real rewards. I do not beleive in an afterlife but for those that do... why not kill yourself now and make room for the rest of us that like it here? If I have one more christian tell me to "have patience" I am going to go postal.

If there is a god after all and its purpose is to test me and annoy me... I'll pass. Send me straight to hell thank you. At least there they know the value of living fully. As if I believed in any of that crap.

I suspect the real purpose of all this "patience" is to make sure that the folks at the top stay in control and can siphon away your life to feed theirs. Go watch a nature show and see how the predators feed on the weak. Now go watch CNN and see the same thing. Bingo! Reality.

I find it amusing that we have so many television shows that actually show you the truth in various ways. And yet still the masses sleep. An episode of "Cops" is an education all in itself. Throw in a few episodes of Maury and some court shows and you have all you need. It is right there on the screen. The rules of biology are never far away. We like to think we left them behind but I can assure you we have not. Reality always wins.

P.S. My favorite TV show? Cheaters!

Feb 3, 2006
Had a pretty good day today. Despite the coming rain and the joint pain it brings to me, I went to the West Town Mall here in Knoxville to meet Karen ( an online friend ). We had a most enjoyable time watching people go by and speaking about things. Chat is great but I can certainly speak faster than I can type. And I think in person you get so many more of the facial expressions and tonal qualities.

I think the only thing that might have improved the experience was if there had been a small group of friends so that more thoughts could be expressed in the conversation. But then I have a thing for social gatherings. I know... yahoo people and social gatherings is almost an oxymoron, but I can dream.

Nonetheless it was great to get out and about for a change. I had a good time. Traffic afterwards was a mess. Persoanal note: friday afternoon traffic in Knoxville is a mess. A man on a shaggy yak could move faster. I will be so glad when they finish with I-40.

I was once again amused at how people in public stare at me when I use my bamboo walking stick. It is about 6 feet long and works better for me than a cane since I am quite tall. People here seem to be amazed... I guess they have never seen a man walk with a limp and a stick? I look pretty normal and boring... I cannot imagine what they think of the teens in Goth outfits! I like Tennessee, but there are some people here that need to get out more.

I would love to have gone traveling this weekend. Oddly I like to travel in the rain. Of course this is not an option since I was quite tired after the mall and tommorrow morning it is back to dialysis once more. I will be most intersted to see if the new filter has the same effect as on Thursday. It really wiped me out. On the bright side: I feel much more calm and balanced today so perhaps it really did a better job. If it does the same again my 4.5 hours will pass quickly as I spent Thursdays session in a light haze. I guess sub-normal BP will do that for you.

It would be really grand if my clinic would install a network access. I think WiFi would be very cool but even a cable tap would help. As it is they don't even allow cellphones. People might say it is no big deal but 4.5 hours times 3 days times 52 weeks adds up to 702 hours of time each year. This is the same as 18 weeks of 40 hour job. What could a person do with 18 weeks of time? In my case watch crappy TV and snooze. As an objectivist I find this unacceptable. I am looking forward to the possibility of home dialysis. Maybe then I can regain some of my time.

Another rant I have is the hours of operation at the clinic. 6am to about 5pm. While this sounds good it is a disaster. They need evening hours! I have noticed since I became ill that the medical people seem to think their time is more important than mine. Since I pay the bills I think this is backwards. In fact doctors and bankers both are pretty convinced of their importance in life. Considering the doctors and bankers I have seen in my life... I think they should think again. What good is a service with no customers??

Feb 2, 2006
Today was an interesting day. At the dialysis clinic the powers that be decided that they should use dialyzers that can be tossed out rather than cleaned and reused. I find it amazing that technology has advanced far enough to do this. Imagine... an artificial kidney that costs the clinic about $8. Will wonders never cease?

The downside to this is that the new unit was very effective. I noticed the difference in the feeling right away. It was somewhat like a pressure all over my body. I think the new filter was simply pulling really well. Added to this was the increase in my blood flow from 350 to 400. Kudos to nurse Carol for noticing and nudging it up more. By the end of my session I had processed an additional 10 liters of blood and my KT/V was almost 1.7... not bad.

As you might imagine I felt like a ragdoll afterwards. In all my sessions I have never felt so wiped out. By BP ran at approx 115/67 the entire day. So I was in a fog for the whole 4.5 hours. Sometimes super effective can leave you staggering to be sure. Clean is good but I think it is going to take some time to deal with this new regime.

Additional kudos to nurse Carol for exceptional needle work. I barely felt a thing... going in or coming out. Now that is a good thing! 15 gauge needle manipulation is an art form in this context.

The rest of the day was rather uneventful to say the least. Clearly a nap was required after coming home. A little food and some TV and thus ends the day. It is hard for me to imagine that anyone can actually do dialysis and work. I hear stories but have yet to meet anyone. I don't know how they manage the fatigue.

Anyone reading this actually working? I would love to hear from you about how you manage.

February 01, 2006
My goodness... how quickly the days of this week seem to be passing. I have always wondered about such things like why time moves differently for some situations.

Monday was a quiet and rainy day here. Monday is my one long day where the weekly dialysis schedule skips a day due to the odd number of days in a week. It is often an interesting day because I feel pumped up and more alert, but also a bit edgy due to toxin buildup. Mondays are a good day to drive. Being edgy on the roads in Knoxville seems more like a survival skill.

Tuesday, of course, was dialysis again. Tuesday is the one day of the week when I really want to go to clinic. After 2 hours on the machine I feel much better. I was amazed this week to once again be only 3.5 kilos over my last time regarding fluid gains. I can only assume the cranberry juice is cranking over my kidneys more than normal. I am at the point where I barely have to think about fluid restrictions at all. Too cool!

Today was a reasonable day too. Felt pretty good and worked around the house a bit. I also took a small nap that transmogrified into a 3 hour sleep marathon! Geez.. I must have been tired. Managed to go get some pills at the pharmacy. My goodness some of those prescriptions are costly. Today was Sensipar and it retails for $300 a month. With Medicare Part D it is only $60 now, but it still adds up. You hear about people selling their drugs on the street. I can relate... too bad mine have no street value.

The weather here has been quite nice. I dread the next coming rain though. I always ache so bad when it rains. I was pondering anything different that might have occurred of late but honestly my life has become dreadfully stable. In some ways that is nice and in others it is really boring.

It is an interesting conundrum that I have all the time in the world to live my remaining life but no money and little physical ability to do so. It is clear that to the doctors and AMA I have become a major cash cow. This answers the question that I have asked of "why did they save my body and then leave my life in ruins?" The plain answer is to make money. Staggering amounts of money. About $20,000 plus a month just for the dialysis alone.

Don't get me wrong... I am grateful to still be walking around, but it is clear that what I wanted was the least of the concerns in this process. Anyone that beleives in altruism should spend time in my world. One learns very quickly that there is no such concept. Everything done in a spirit of "charity" is done for the feel good of the person doing it. No exceptions. The ugly situations are the ones where the feel good is much larger for them than me. Sometimes there is little on my end and I often wish people would give it a rest.

I run into the same thing online. People actually want me to make them feel better about me being so ill and dying. It scares them if they find out about it. It appears from this end of the world that people in general have gotten so very shallow. They act like frightened little children. I think somebody needs to grow up.

Clearly the idea of an objectivist society as defined by Ayn Rand of Atlas Shrugged fame would be far superior to the strange mix we have now. As an ill person I can think of nothing more frightening than if the religious factions ever achieve the society they desire. If that ever happens there will be widespread misery. And remember... last time the church ran things... they called it the "Dark Ages". I understand now why that was the case.

What we need is a way for the ill and disabled to still be productive in some way. We are not dead, but simply reduced in function. After seeing some of the people working in stores these days I think disabled folks with some intent would be a better alternative. I like teenagers but they sure have a lot to learn about working.

I think productive work is a joy that exceeds all others. I am just endlessly amazed at the number of people who hate theirs. I think many of them might benefit from massive illness and near death situations. Perhaps then they might better understand that life is meant to be lived rather than just tolerated. What a waste that concept is... and what would I trade to have mine back again? Answer: almost anything.

So be careful what you wish for... you might just get it. And then what will you do?

January 29, 2006 Part II
Sunset once again. It was such a nice day here in Tennessee today. 65 degrees or so. I decided to spend some time and energy working in the garage finishing the lights. Now that the lights are up perhaps I can get some of the woodworking tools in order. It seemed like too nice a day to waste even though I was rather depressed.

Working was good for my mood. I think I miss working more than anything else. My joints still ache but my feet are starting to improve. They say gout but whatever it is hurts quite a bit. Some days I simply cannot walk. Today was a good day and I was able to function. Honestly it was nice to be productive.

I am planning to return to my woodworking as soon as I can. Since the government has made it quite clear I get nothing save Medicare ( which I pay for ) it has become clear that no matter my condition I will have to find a way to generate money. As an objectivist I find this to be a pleasing idea, but honestly it is an uphill climb now. My body is no longer very useful... I guess the mind better take over.

I think once I can get the shop space working it will be easier. I can roll around on a chair if I have to do so. I think considering home dialysis might help too since it would give me more days. Due to the timing of the clinic I pretty much loose Tuesday, Thursday and Saturday. A small price to pay for life but it really chops up a calendar.

I have received some interesting comments on my blog. As a point of reference for the religious folks: I have read and studied all the major religions of mankind. And I am still not impressed. Enough said.

January 29, 2006
Five Stages of Dying: I looked up those stages of dying. The link above takes you there if you don't know them. If you have Polycystic Kidney Disease like I do then you probably already know them rather personally.

I think this morning I would be in stage 4: depression. I feel so hollow after breaking down last night. All my efforts seem so meaningless somehow. I know that I need to find a way to go on but today I am not even sure how that works. Everything I knew has been wiped away by this disease. Even worse is that I now understand that I had this as of the moment of conception. That being said this ailment has guided the path of my life. My life was not my own and I never realized it.

Once you know that there is a frantic feeling to make things right.. to try again and do it better this time. Then the reality of your situation hits you and terror ensues as you realize you don't get to have a "do over". Where you are is where you are... I guess that would be that acceptance thing.. stage 5.

Initially I wanted to blame someone. I was so angry... now I just feel empty. The worst part is that I might die next week and I might last for years. Then I remember that I already did... and now it is just a question of when my balances in my body go wrong.

Shock, terror, fear.. numbness. For a society that is based on Judeo-christian beliefs.. we sure are ill prepared for something so real and inevitable. And people ask me why I am an atheist? Try dying some time... it will change your view too.

January 28, 2006
Today was a tough day. Saturdays always seem hard because it is the 3rd day of dialysis in the week. Generally you feel pretty good and are inclined to play hookey and not show up. I did this once on Christmas Eve 2005 and learned my lesson. I felt pretty sick come the next Tuesday. Skipping days is not recommended.

It was also a long day because the weather was nice and the TV at the clinic was bad. Weekend TV is never much entertainment. At least on weekdays I can be addicted to those stupid soap operas! I watch the CBS lineup because I have to share with some other people that have seniority there. 3 chairs to a TV only sounds good if you don't sit in the chair.

During the last hour of my treatment my BP started to slide away. I can ride all the way down to 110/60 before I start to hurt. After that it gets pretty unpleasant. My nurses propped me up with saline but it is clear I went for too much fluid. Happens every time... take off too much and I start to fade. I can actually go to 80/50 but the room sure spins! Not really a fun ride. And it makes you feel groggy all the rest of the day even after it comes back up. Makes it really tough to breathe too... I kinda like breathing as a rule.

I have been feeling odd this entire week really. Lots of "bilateral kidney pain". Translation: my back hurts! I have been actually doing really well on my fluid gains... 3.5 kilos or less. Normally I run over 5 kilos each time cause I am really bad with the ice chips and water. This last week however I have been drinking a bit of cranberry juice. Low in potassium and I like it. Apparently it is affecting my kidneys because there is more water heading out the door. This is amazingly good for me. Certainly helps with the fluid restrictions.

Unfortunately by sundown I was tired and after discussing some financial issues with Sandy I broke down and cried. I just lost it. In 5 months of playing this game I have not shed a single tear. I have been brave and maintained a good sense of humor. I guess things finally caught up with me. Oh well... win some, loose some.

I have tried to define why this is so scary. We are all dying as humans... why am I so shocked? I think the truth is that in my future there is clarity. I know that nature already cancelled my contract. Without technology I would be very dead in 2 weeks. In a very real way I am already dead. I am certainly out of "the game". Using that metaphor I went all in and lost all my chips. Now I just get to hang out around the poker table for a time. But it has become so very real to me that I will not be winning this game.

I think I need to go look up those stages of dying. I think I already did anger and grief. Wonder what is next?

January 27, 2006
Well it finally happened. Yes... I too now have a blog. What is the world coming to?

Everyone I meet seems very curious about my experiences as a dialysis patient. So it seems more practical to write in here each day than to try to answer each comment or question one by one. Hopefully this blog will be of use to others on the same path. Sometimes it can seem very overwhelming to be sure.

So grab a cup of ice chips and read a bit. Questions and comments are more than welcome.

It has been 5 months and 2 days since I started on this weird journey. I went to the ER on August 25th, 2005 and started dialysis August 26th, 2005 in the afternoon. The delay was for tests, access for the machine ( read as tubes in my leg) and a nice transfusion of blood to give me something to dialyize. Yeah... I was in pretty bad shape.

Since then it has been quite a ride. Some days I was feeling good. Some days I wanted to die. But in the end I feel pretty good and I get a second chance at life. There are not many times we get that for sure. I am trying to make the most of it since I don't think I will get a 3rd shot.

The biggest issue of course is the time taken up. 3 days a week for almost 5 hours total. It takes a big chunk out of life. On the bright side: Being dead is rather time consuming as well.

The people at my clinic where I dialyize are really great people. Everyone is friendly and the staff is terrific. I feel very safe when I am there. If you die in that place you must have been working at it because they are very good at fixing what ails you.

The biggest thing I have trouble with is blood pressure drops. In my case when I reach my actual dry weight and excess fluid has been removed my pressure suddenly plummits. This would not be so bad except that it hurts quite a bit. I can feel it each time as a sudden headache, nausea and that feeling that a rock is sitting on your chest.... a very big rock.

Other than that dialysis has become almost boring. I go, they stick me, I watch TV alot and then I go home. It fatigues me but overall it is not so bad.

I have been trying of late to find somthing to do while I sit in the chair ( recliner). With my left arm having to be still for the 2 large IV needles it leaves me with only one hand to work on things. I have tried sketching and reading, but both are hard to do there. I wish they had computer access, but no such luck. They won't even allow cellphones.

An even bigger challenge is trying to be productive on the off days. Travel is limited since I have to be at clinic every other day and kidney failure for me has caused some serious pain in the feet. No.. not my butt.. my feet. It seems when you have kidney failure your bones can get torn up and you develop a form of arthitis. Oh the joy! The up side is that I can predict rain better than the weather channel.

Despite being disabled I do not qualify for government assistance. I get Medicare because of the dialysis, but not any actual "check in the mail" money. That was a shocker. Now I am disabled and broke. Not exactly the future I had planned to say the least.

I am hoping to eventually rebuild my woodworking business, but I am beginning to wonder if I can. My body is not what it used to be for sure. Perhaps when warmer weather comes I can hobble about enough to manage. I sure need something... this no money thing really sucks. At this point I am wondering if I should try a different career? Perhaps something that does not require a lot of standing up for sure. We shall see...

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