I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: jjneyjr on April 11, 2013, 06:43:05 PM
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The hardest fundamental question one has to answer is why and what are we here for.
Our moms would say “BECAUSE”. (Smile)
Questions like, what have I done and what I was supposed to, was there a purpose, what I have I achieved?
Anything?
I guess my questions could all be answered with the opening of the tap. A beer tap? The tap of knowledge?
The tap is a unique path unwittingly provided to me for self-termination but please allow me some time to digress.
Back when I was told I had CKD, I understood the all the medical risks but I also understand that people die every day so I continued to live. Plus I understand the fact that living or life causes dying no matter what your philosophy may be. Life in a certain way is the cancer killing us all. But wasn’t life good?
In the nihilist’s mind my mind since everyone dies no one wins. For example look at Mr. Microsoft with all that wealth but in the end he can’t escape that cancer called life.
Wasn’t that life cancer good?
Einstein, dead.
All of our heroes will fall upon the same fate, death.
So there won’t be any bad years following my fifty one great years. I will not allow bad to be absorbed into the collective conscience of the world because I am a good person.
I will miss the smell of the rain on a freshly cut lawn and the look in a kids eye when he or she catches on to something new. I will miss playing, writing and composing music and I will miss painting. I will miss meaningful conversations with friends or that fresh new feeling of love. I will miss programming and building and creating things with my hands I will truly miss that cancer called life and all the joys it brings.
The doctors said give dialysis 6 weeks for it to get better but the joy, laughter and hope is slowly fading from my memories. I want to remember the good, not the bad. Again I want to place good memories in the collective consciousness not bad ones.
So I will give it a six week trial in hopes that it is much better than the first 3 treatments or I can see me taking a proverbial walk upon the mountain.
Cheers,
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:embarassed: Well,,,,,,,,,,,,,,, from a non nihilist (of which i had no idea what that ment, so looked it up ;) ) i say,,, God bless you in your health and life and may your life become, or continue to be ;D what you wish it to be. You look to be a very sincerely nice man, and i wish you well and that dialysis will indeed bring you back to the person you desire to be... :flower; :cuddle;
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jj, I'm really glad you decided to give it a try. Personally, I spent most of the first month thinking the same thing - "Why the f$%*#ng he%% did I start this?" The beginning was misery - I crashed and cramped and threw up and barely made it home to bed before passing out.
But it got better.
Oh, it never got fabulous, mind you. Until you get to a stable dry weight and figure out what settings work best for you, as well as how to limit your fluid intake, it's a lot like medically approved torture. But it slowly stabilized into something tolerable. I got to the point where I could drive myself there and home. I was able to stop and run some errands after treatment. I still wanted to sleep the rest of the day, but I didn't have to if I had things I really had to do.
What it did get to was something that gave me enough good days when I wasn't at the center to make me feel like it was worth doing.
When I started NxStage, it got even better. I felt better, and getting to do it at home turned it from a dreaded drag-myself-to-it appointment into a rather boring chore that I needed to do, like laundry or mopping the floor.
I think the miserable beginning is a common experience. I hope you get through it okay.
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I love how honestly jbeany writes about dialysis. Yes, perhaps it does get tolerable - I'd reckon even the most upbeat among us doesn't exactly delight in doing dialysis - (I await a certain member's correction) but I suppose there are many things that I have to do in a day that are only ever tolerable, yet they are over soon enough and I get to the wonderful parts.
That sounds like I'm trying to talk you out of quitting dialysis, and I'm not. I understand the view that nothing matters because we all come to death in the end. I guess, in my happier moments, I think *everything* matters because we all come to death in the end.
I hope you find dialysis worth the effort.
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I hope you give it a good two months, or maybe a little longer and see what happens. There are so many things in life to enjoy and you seem to have nailed most of them, from my point of view. I am 74 years old and am still in stage 4 so I have plenty of room to talk, but like you, I feel there is no point in being alive if you can no longer enjoy the simplest things, other than to be a burden on my family. So, I wish you good dialysis and as most people will say, " hang in there buddy"
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I think that once you start to feel halfways human again, then you can go back to all those things that you enjoy. I think that the time it takes to get there is different for everybody. I know for myself, it took about 3 months. I started HD deathly ill from a severe peritonitis infection around the end of December 2008, and I was running the streets of NYC with my best friend the end of May 2009.
I'm glad you're giving it a shot (and no, I don't know what a nihilist is either). After 6 weeks, you may find you have a different view of dialysis than you do now. I still call it life support, but I am glad to have it
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"... it's a lot like medically approved torture."
What a great turn of phrase!
cheers,
skg
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It was about 28 years ago that my mom's kidneys failed. She had made a life for herself as a homemaker, and now both my sister and I had moved out of the house, and her relationship with my dad, never really strong, grew worse. Then, she ended up in the hospital for 3 weeks, and she told me that she just wanted to die. I managed to talk her out of it.
In the following weeks, dialysis slowly brought her back, and she felt better than she had in years. She took it upon herself to help another dialysis patient learn how to cook healthy foods for herself (this other woman was diabetic, and a bit slow), which resulted in a friendship that lasted many years. She also found that the time spent hooked up to the dialysis machine allowed her the ability to make quilting squares, which started her most prolific period, during which she made more than 70 quilts, several of which earned her awards. She also lived to see the birth of her first grandchild, and to know her other 2 grandchildren.
She lived another 18 years, thanks to dialysis and a transplant. In the end, it was cancer that stopped her, but I'm certain that she was glad that she didn't give up when she wanted to.
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Frankly, you can call yourself a "nihilist", but many would read your missive and consider you a selfish coward.
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Thankfully, being called a "selfish coward" is something no one needs to worry about on this site!
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I don't think any of us can presume to know the inner workings of anyone else's mind.
Everyone reacts to a diagnosis of ESRD differently. Dialysis may be a walk in the park, or it may be akin to daily torture. A transplant may be in the cards, or it may be nothing but a pipe dream.
I'm glad your mom got 18 good years out of dialysis, but as they say in the world of statistics "an anecdote does not equal data".
Frankly, you can call yourself a "nihilist", but many would read your missive and consider you a selfish coward.
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Bummer.
"Since everyone dies, no one wins" is absurd. You're thinking like a man, where everything is a competition. That's typical hierarchical thinking. Everyone on IHD has faced terrible adversity, yet somehow we have found ways to touch the lives of others in ways that defy definition. You never know when a kind word or a good deed can transform the life of one you've touched, and that transformation of that one life could change the world. Steve Jobs might be dead, but is death the definition of "losing"? Really?
Abraham Lincoln is dead, but he was the catalyst of a movement that freed millions. Did he "lose"? How many of us "won" because of him?
Think past the end of your own nose.
Joy and laughter might be a distant memory at the moment, but that doesn't mean they are gone forever. You're going through the hard part. I went through 8 years of this pre-dialysis crappy mindset, and it was the people here on IHD who were both gentle and forceful enough to help me through it. Every day I had to make a choice on whether or not this would be a good day or a bad one. For a while, you will have to battle every single damn day, so if you want to think in terms of winning and losing, there you go. Each day you will have to fight, and whether you win or lose on that particular day will be entirely up to you.
I was my own worst enemy for years, and I don't want to see that happen to you or to anyone else.
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I don't know, MM. Did you ever read H.G. Wells' Time Machine? Remember that oh-so-uplifting ending when they wonder what the point of anything is because, if I remember correctly, the world is now populated by gigantic bugs and that's it? (This is why I don't care for SciFi. It tends to be relentlessly depressing.) I took that statement about 'winning' to be shorthand for that sort of issue, but maybe I was meant to take it on an entirely literal level. :waiting;
There does seem to be a bit of all-or-nothing thinking going on here, Jay. If you can't have a life with minimal bad in it, you don't want it at all. That's what I'm hearing, anyhow. I'd find it hard to believe you made it 51 years without facing some horrible things, but if not, wow, you are truly lucky. Assuming there have been other traumas and unpleasant obligations in your life, what makes dialysis different if you don't mind my asking?
Frankly, you can call yourself a "nihilist", but many would read your missive and consider you a selfish coward.
You probably don't want to know what many would consider you after reading this missive!
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LOL, maybe those among us who are not nihilists don't have the same understanding of "winning" as those who are. Maybe I'll rethink it once the gigantic bugs take over.
"Life is the cancer that is killing us all."?
"...that cancer called 'life'."?
I'm not sure that cancer survivors would agree.
Oh dear. Never in a million years would I have thought someone would grab my "Gloomy Guts" crown. :P I'll lend it to you, but only for a short while. Give it back as soon as you can! :cuddle;
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Frankly, you can call yourself a "nihilist", but many would read your missive and consider you a selfish coward.
Alex, this is over the line. Read the board rules. NO PERSONAL ATTACKS ARE ALLOWED. This is a support group. Consider this fair warning, and keep in mind that the admins do ban members when necessary.
jbeany, Moderator
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I'm a hypocrite when Ed had to start dialysis I never thought about whether he should start. I can't imagine my life without him. But now that it's my turn all I can think of is my death and if I'm going to die anyway why start dialysis.
Ed tells me that I need to for the family. That everyone needs me. I know that if I don't try dialysis one or more of the kids will be very upset.
I understand your prospective.
But the purpose is LOVE. and if you miss out on that then you do loose.
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Sydnee, :cuddle;
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In July 2008 my mother's kidneys failed. She had been a nurse for many years caring for people in the hospital, Duke's trauma ward and the transplant ward. She gave up a career as a concert pianist to raise her three children after her divorce in 1964. I had been taking care of my mother in her later years as her health declined and when her kidneys failed I was selfish and talked her out of letting nature take its course. She knew all too well the many problems associated with dialysis and heck she was 72 so she tried to convince me to let her go but I resisted. I told her I would train with her and be her care giver and I would set her up an electric piano so she could play music again. When she came back from the hospital her room was redone for PD and set up with a hospital bed a powered recliner a widescreen and her computer. She even had a small fridge to hold some drinks so she wouldn't need to make trips to the kitchen. She was ready for PD and she loved her new room. Her craft room was set up in the next room over she could live out the rest of her life in happiness doing what she loved all her hobbies. She died 2 months later the most excruciating painful death one could imagine. A death from calciphylaxis. She looked like she had been passed through a meat grinder.
So yes Alex, I may be a coward and I have enjoyed my life but it is my life not yours so whatever you think of me I really don't care.
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no no jj,,,, only :cuddle; :grouphug; and gratitude for what you've done for your mom. I am a caregiver, a selfish one , to my hubby and i do the best, the very best i can to make his life as good as it can be, but!!! I always wonder if what i do is right for HIM. You have rights to your thoughts and feelings, and beliefs and you have given with your heart, and i hope you hold that as good in your heart as well. to me, God is always my lead, and of course i wish that you had Him as well, but that is not for me to ............ well, mabie it is,,lol, BUt..... im not goen there ;) I still ask for blessings on you, and wish you goodness and health.... :grouphug;
modified to add..... I mean no offence about wishing blessings on you... you are strong, you can just push them off ;) but it is my heart wishing good for you,,thats all.
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jj, is the manner of your mother's death contributing to your fear of dialysis? Calciphylaxis is pretty rare in someone who has been on dialysis for only 2 months, I believe.
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Kind of a long story MM.
She had Calciphylaxis for over 2 years and when it finally ulcerated it was a terrible ugly sight. It took 2 months to get the smell out of the house.
That and the stories I grew up with!
Cheers,
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LOL, maybe those among us who are not nihilists don't have the same understanding of "winning" as those who are. Maybe I'll rethink it once the gigantic bugs take over.
"Life is the cancer that is killing us all."?
"...that cancer called 'life'."?
I'm not sure that cancer survivors would agree.
Oh dear. Never in a million years would I have thought someone would grab my "Gloomy Guts" crown. :P I'll lend it to you, but only for a short while. Give it back as soon as you can! :cuddle;
Just to be clear, I've never considered myself a nihilist. I am way too upbeat for that crowd. My friend whom I saw yesterday is teaching Camus to his students. I thought of this thread when he mentioned this, and while I read L'Etranger in French at prep school, I always remember the first line in English. "My mother died today, or maybe it was yesterday, I don't remember." That so perfectly captures the kind of angsty ennui that I think of when I think of nihilism. I doubt Jay is the first to call life a cancer. That seems like a metaphor that was used long before any of us were born, but again, I read this all metaphorically in the raw emotion, stream-of-consciousness, highly symbolic tradition.
But the purpose is LOVE. and if you miss out on that then you do lose.
This is exactly my feeling.
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Love is the only true cure for the cancer of life!
Cheers,
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Camus engaged in entirely too much navel gazing. Perhaps he found something there of more value than just fluff.
I could ask for a more encompassing explanation of the "cancer of life" metaphor, but I really don't think I want to know. My daffodils are blooming and my raspberries are budding, and I choose not to see any malignancy.
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I feel like any person's feelings are valid. I've been in some pretty low places where I seriously considered just letting myself go. I knew then that it was purely physical. I have no doubt that it's possible for a person to be in a place where death is really the thing they are ready for. Why did I hang on? I've still got a few people in my life that I really don't want to leave, so I continue to hang on through the times when it would actually be easier for me to "let go". because the time i get to spend with them is worth the trouble. But again, if they weren't here on this earth, and I found myself in another physically torturous situation, i would probably let go. having said that, I hope I will always have a reason to keep trying, and I very much hope that every other person in my kind of situation will likewise find a reason to keep enduring the pain. Because for me, regardless, life is generally better than death. Yes, life is a terminal disease in that, once you are born, you will most certainly die. In between, it's about good vs. evil: good being the pleasure of love between souls, and evil being disease. I totally agree with the idea that love is the cure for the evil of death. While you are in love, even the love of a loving God, then in a way, there is no death, only transformation.
jjneyjr, hope you can endure and that it gets better. I am about your age, and it's been a long road too. But here is one small voice saying: for me the world is better because someone like you, even though i don't know you, would try to hang on and would write something insightful about life.
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I never studied philosophy at school or university, although I do consider myself philosophical. When I consider the two very elements which brings us to this forum; life and dialysis, I conclude that the equation is very simple... Dialysis = life. It really is that simple. And if that is too hard to comprehend or accept, then there is this wonderful quote from arguably the finest film of all time; "Get busy living, or get busy dying." Andy Dufresne. Now that doesn't mean that we have to crawl through a mile of $hit to get living, but it does mean we have to saddle up to dialysis three times a week, which is a small price to pay when you consider the benefits we enjoy staying alive. Of course life would be much better if my damned football team could actually win a game once every while!
Peace.
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I'm getting the feeling that I am not the only one that is philosophical around here.
Cheers,
:beer1;
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I feel like any person's feelings are valid. I've been in some pretty low places where I seriously considered just letting myself go. I knew then that it was purely physical. I have no doubt that it's possible for a person to be in a place where death is really the thing they are ready for. Why did I hang on? I've still got a few people in my life that I really don't want to leave, so I continue to hang on through the times when it would actually be easier for me to "let go". because the time i get to spend with them is worth the trouble. But again, if they weren't here on this earth, and I found myself in another physically torturous situation, i would probably let go. having said that, I hope I will always have a reason to keep trying, and I very much hope that every other person in my kind of situation will likewise find a reason to keep enduring the pain. Because for me, regardless, life is generally better than death. Yes, life is a terminal disease in that, once you are born, you will most certainly die. In between, it's about good vs. evil: good being the pleasure of love between souls, and evil being disease. I totally agree with the idea that love is the cure for the evil of death. While you are in love, even the love of a loving God, then in a way, there is no death, only transformation.
jjneyjr, hope you can endure and that it gets better. I am about your age, and it's been a long road too. But here is one small voice saying: for me the world is better because someone like you, even though i don't know you, would try to hang on and would write something insightful about life.
This is nicely put, and helpful insight, at least for me.
Camus engaged in entirely too much navel gazing. Perhaps he found something there of more value than just fluff.
I feel I need to (briefly) defend Camus. He was known as a fiercely disciplined author, his best known work (L'Etranger) was compact (thus we could handle it in French class) and, more importantly, fiction, he defined a philosophy in a single sentence that I've already quoted (I have yet to meet the person who can discuss that work without quoting the first line), he won the Nobel Prize and died at 46. Frankly I cannot imagine literature or my life without him. I also suspect he lacked the time for too much self-reflection. He claims (via Wikipedia) that his life was devoted to opposing nihilism. I did not know that until I skimmed his Wikipedia page, but it makes sense. Mark Twain opposed racism, but he had to write racist characters to do that effectively.
I could ask for a more encompassing explanation of the "cancer of life" metaphor, but I really don't think I want to know. My daffodils are blooming and my raspberries are budding, and I choose not to see any malignancy.
It's hard to write one's feelings down and open them up to criticism, especially difficult when it involves the feeling that you'd rather not live. I think it's wise to look away if you suspect your own emotional state might be too fragile. Sometimes I make that choice, too. I am lucky right now in that I can discuss these subjects and leave the computer and still appreciate all that is worth living for. I trust that if I ever feel differently, IHD would be one outlet where I could discuss this openly.
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I have a very simplistic view of the philosophy of life, as least how it pertains to me, because I like simplistic things. They are far less complicated. *LOL*
I have six people that my world revolves around. As long as they endure, so will I. I do know that at some point, I may not have a choice in the matter, but as long as I do, I will not put these six people through the pain of losing me unnecessarily.
I'm not really sure if this is a philosophy, but it is why I continue to have a machine keep me alive
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Very astute RiKi!
Cheers,
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I could ask for a more encompassing explanation of the "cancer of life" metaphor, but I really don't think I want to know. My daffodils are blooming and my raspberries are budding, and I choose not to see any malignancy.
It's hard to write one's feelings down and open them up to criticism, especially difficult when it involves the feeling that you'd rather not live. I think it's wise to look away if you suspect your own emotional state might be too fragile. Sometimes I make that choice, too.... I trust that if I ever feel differently, IHD would be one outlet where I could discuss this openly.
As long as it is understood that looking away implies neither criticism nor disinterest but, rather, self-preservation. I'm not sure I've ever been able to look away no matter the state of my emotions, but I don't claim to be particularly wise.
Many people have discussed this topic on IHD, and if I remember correctly, there has always been someone to criticize. But the critics have been few. IHD continues to be the best virtual sounding board.
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I have a very simplistic view of the philosophy of life, as least how it pertains to me, because I like simplistic things. They are far less complicated. *LOL*
I have six people that my world revolves around. As long as they endure, so will I. I do know that at some point, I may not have a choice in the matter, but as long as I do, I will not put these six people through the pain of losing me unnecessarily.
I'm not really sure if this is a philosophy, but it is why I continue to have a machine keep me alive
I'd call this "a philosphy".
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Of course life would be much better if my damned football team could actually win a game once every while!
Now, THIS is "a philosphy" that really speaks to me. LOL!
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sometimes it is simpler and easier not to overthink. I like Riki's philosophy.
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Dialysis does not equal life. Dialysis equals survival. Dialysis sucks in all its ways. It has allowed me to survive for many years, however being hooked up to a machine 3 days a week for hours on end is not life, it is survival. I wish you luck and Godspeed on your journey. I hope the time you spend on dialysis becomes more pleasant.