The Thoughts and Wild Ranting of a Home HemoDialysis Patient
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December 31, 2006 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.
December 23, 2006 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.
December 21st, 2006 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.
December 16th, 2006 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!
December 15th, 2006 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!
December 12th, 2006 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!
December, 7th, 2006 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.
November, 27th, 2006 01:17:30 PM 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!!
November 23, 2006 07:49:44 PM 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.
November 22, 2006 03:16:19 PM 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 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 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 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 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 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.
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
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
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
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.
9-14-2006
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
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
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 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 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 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
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
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
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
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
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
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
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 |