I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: StarryNight16 on May 11, 2018, 07:44:20 PM
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Dear fellow dialysis patients and caregivers, y'all helped me out in my last question ("How? How do we do this?") with some straight talk and some tough love. Maybe you can help me with this question: why us? I mean, yes, there are lots of reasons and there's no reason at all, but I wonder, for each of you, how do you answer this to yourself, what do you tell yourself in those dark nights when you wonder why some of us were chosen for this road and some of us were not. What is your answer when you ask yourself this question, because I still don't know how to answer it for myself. Thanks.
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Out of all of the questions I asked of myself, of my doctors and of God, "Why me?" was not one of them.
I was never chosen for this road. I don't believe life works like that.
Stick with working to find the answers to "How? How do we do this?" Please don't waste precious time and energy with the "why" stuff.
:grouphug;
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I agree completely with MooseMom and I would like to add that one of the answers you are looking for is : genetically inherited diseases...
In my case I inherited an extremely rare form of Systemic Lupus and Mixed Connective Tissue Disease with some other rare medical components from my genetic mother, who died shortly after my birth because of medical complications.
As you can see, in my case it was a question of genetically inherited diseases which "usually" also lead to kidney failure...
But ...I have always believed that the point is not the fact that one suffers from whatever diseases, but how to make sure to survive despite these diseases with an acceptable quality of life ... :grouphug;
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Most of us Believe in a Supreme Power, the Great Creator of Everything which has many names among the various Religions.
I Believe that Life is a series of 'Tests' put before us to teach us so many things that we are not aware of. While unable to make sense of much, we do learn, and through our interaction with others we pass on much of what we have learned.
All we can do is keep trying.
Take Care,
Charlie B53
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I know (to answer my own question) it is indeed a genetically inherited event, and so that's the immediate answer to why my wife got kidney disease. But I still don't know why this happened to us. Plenty of people carry these genetic markers and don't get sick, and then there are some people, like all of us reading this, who just get dealt the wrong hand of cards and are sitting at the wrong table.
And I still don't know why. I don't know why there is so much suffering in the world, and why some of us are asked to bear so much of it. I don't know why a kind and loving God can ask this of us. I don't know if God really is kind and loving or whether He simply set everything in motion and then just hopes for the best.
I do know, I think I know, that we are defined not by what happens to us but by how we respond to it, and that is my hope, that I can be the quiet hero who takes care of his wife and his children, and who can look back at the end of his life with the satisfaction of a job fairly well performed. But oh, how I wish I had an easier path.
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Who says we have a "kind and loving God?" Not me. Life is a crapshoot and on top of that, Karma is a bitch.
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"Chosen"? I don't see it that way. To me, every biological entity, while miraculous and beautiful, is temporary. It's amazing how many processes can falter and fail - the variety of diseases attests to that. It happens to people, to animals, to birds, every living thing (that isn't eaten first). I doubt that some intelligence beyond is saying, "I know - kidney failure for Joe!".
Stuff happens. My hubby got PTSD while in the VietNam war. He also got high blood pressure. He also was exposed to Agent Orange and thus got Ischemic Heart Disease. And now he's dealing with ESRD as a byproduct of the high blood pressure. Some of this can be traced back to the fact that he joined the Navy, so he sees all of this as a combination of the results of his own choices and decisions, his own genetic make-up and the time and place into which he was born.
One thing I do know: If life were a bowl of cherries, we'd learn nothing. We'd be like the Eloy in "The Time Machine". Adversity builds knowledge, character, and solutions. It also is quite painful, leading possibly to spiritual challenge and potential growth.
That's Life.
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My answer for me and me only is:
One dark and stormy night God was pacing the halls of Heaven because She was bored. Every Jimmy Chu heel that struck the golden street set off a spark and created rolling thunder. Every swirl of Her Versace gown created a vortex. " What to do.........what to do.....what ... to......." At that moment I strolled past a window and BOOM! I was done for..... because at that moment God saw me not doing my part to maintain Earth and She did not like it even a little bit. So--She pointed Her well manicured index finger at me and said "YOU!" "HERE!"
Normally, it would be an honor to be recognized on any night by God just not this night. The gist of what She told me is that because I was an only child born on Christmas Eve (that part is true) I was truly blessed with good health, good jobs and good friends. So having lived, and while continuing to lead, a long life AND since I am the last leaf on my family tree there are some left over illnesses that were supposed to go to many relatives but they are all waiting "up there" for me to arrive. She cannot in all fairness leave these trials and tribulations just lying around so they have been assigned to me to fulfill the family legacy. HBP, stroke, atherosclerosis, arthritis, removal of at least two organs, ESRD.....the list goes on.
Although the story is mostly not true that IS "my why". Some folks get the short stick.
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StarryNight, I'm not sure there is much honor in being a "quiet hero". Don't be quiet! Fight! Fight for better dialysis. Be an advocate. Closely observe the quality of the care your wife is receiving. If you know of other people on dialysis who are hurting and need support, send them to IHD. Be involved. Be an advocate. Support and be vocal about organ donation. There are many people on IHD who have refused to be quiet.
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lulu, I've never asked God why She chose me (and why She chose Versace, which can be garish if She overdoes it with the accessories), but I've often asked Her why She chose my son and gave him autism. It seemed so, well, wasteful. Being "chosen" oneself is bad enough, but when She chooses your only child, I get angry. And oh, so sad.
I hope She chooses you to have a long life to come. :cuddle;
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My answer to the question why me Is Why not me? My whole lIfe has been predicated by luck, after being thrown out of Colledge my father got me a job at AT&T where one day they said to me take this test if you pass it we will send you to programming class. That started a 40 year career as a systems programmer at AT&T, New York City, and HP which I would have paid to do. For most of my 40 years were spent bringing new technology into production systems. I was a early participant in UNIX, TCP, DEC Computers, 3B computers, Sun systems, Raid technology, and more. It was a blast. Spending my retirement years on dialysis is a minor payment for a life spent installing and managing multi million dollar machines.
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Holy crap!!! Someone else who actually used a 3B2 and 3B5.
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And another: I was a Software and Systems Engineer since 1977 for Bell & Howell (back when they were a very different company), Hughes Aircraft, Rockwell Collins and most recently Eclipse Aviation. Mostly programming in FORTRAN and 'C' on DEC machines, CP/M and Unix platforms until they learned I could manage people and processes. Hubby was a hardware and machine language guy, and we met at work :shy;
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Never used a 3B5 but used tons of the 3B2 and 3B20s. In fact as far as I know the 20`s are still used by AT&T to control the phone network. The army used the 3B2`s in 1991 during the gulf war. They dropped one out of a chopper from 30 accidentally and after they cleaned the box off it worked like a charm. The 2`s were also the original development box for UNIX 5.
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Hate Unix!
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Whenever I find myself asking the "Why me" question, it is usually the result of my being overstressed and very tired. I then do a reassessment and think of ways to make life easier. I think of what tires me out the most or what stresses me out the most and what I can change. As for stuff that cannot be changed, I reassess how I look at it and how I might be able to change my attitude or outlook. For instance, after treatment today my husband came home and we spent the rest of the day going out and doing whatever came to mind. We laughed, we ate and shopped. We had a good time and not once did we ask ourselves "why us". At least not today. Today was a
good GREAT day. War game things a bit, do a reassessment and find ways to make your life easier and more bearable. Sounds like you are at the point.
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Loved UNIX, 10000 lines of c and assembler were sent out with each installation, the whole damn os and commands. In 10 years from 1978 to 1988 I was learnings the internals by working with the code, writing drivers and having a great time. Even ended up teaching UNIX internals in the AT&T data school in Piscataway.
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Loved Linux and variants. This forum runs on Linux, plus I have several different databii on Linux servers, one with millions of records, all working wonderfully. My most recent project was tracking down a bug in a commerce system that turned out to be a setting in the php.ini file. Got loads of goodwill on that one because the original developer of the code was stumped.
I worked for a tech company designing PCB layout software many years ago, and we were using 3B2 (I think I was mistaken about the 3B5 - I looked up specs on that machine and am reasonably sure I didn't use it). The grand plan was to sell our software on 3B systems, but it morphed to Apollo and Sun. Eventually, the company folded and I got a $72 check for my stock option that was supposed to make me rich :P
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So... does every discussion end up being about computer programming languages from the 70's and 80's? I'm just wondering...!
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Yes. Its sort of a "remember when........." IT geek thing. Makes us feel young again. k?
C:/DOS
C:/DOS/RUN
RUN/DOS/RUN
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Hated dos, until window came along used Unix on my pc`s
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So... does every discussion end up being about computer programming languages from the 70's and 80's? I'm just wondering...!
Maybe start a Geeky thread for the oldies? Like now? ;D
Love, Cas (personal, not as moderator)
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So... does every discussion end up being about computer programming languages from the 70's and 80's? I'm just wondering...!
Gee, I hope not. Nothing more boring and OT (and I'm even a computer professional) than reliving your relationship to Linux, mainframes, et al.
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I don't really dwell on the question of "why me." But I am constantly thankful that my condition is what it is - it could be quite worse, or it could have been so bad that I would no longer be living and I'm happy that it grants me the good life I have.
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So... does every discussion end up being about computer programming languages from the 70's and 80's? I'm just wondering...!
Gee, I hope not. Nothing more boring and OT (and I'm even a computer professional) than reliving your relationship to Linux, mainframes, et al.
Ok then, since you are tired of hearing about modern languages, let's get with the times.
I've recently been whiling away the time while I dialyze by learning Python - a language that didn't exist back then. udemy.com has some excellent online courses for short money. It's fairly easy to learn, but I still have to get familiar with the rather extensive standard library and shore up my understanding of dictionary argument packing and unpacking. I've been approached by one company that may have an opportunity for me to do some machine automation using Python to drive an Arduino.
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So... does every discussion end up being about computer programming languages from the 70's and 80's? I'm just wondering...!
Gee, I hope not. Nothing more boring and OT (and I'm even a computer professional) than reliving your relationship to Linux, mainframes, et al.
Ok then, let's get with the modern times.
I've recently been whiling away the time while I dialyze by learning Python - a language that didn't exist back then. It's fairly easy to learn, but I still have to get familiar with the rather extensive standard library and shore up my understanding of dictionary argument packing and unpacking. I've been approached by one company that may have an opportunity for me to do some machine automation using Python to drive an Arduino.
I sure hope you have investigated the jupyter notebook ui for Python, that's truly an innovation in learning and playing with code. We are doing a Python book club at work and it gives a great UI to go over team member led sessions and share code with each other.
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I think I am going to start re-learning COBOL and FORTRAN...and relive my high school days (or was it daze? ) ;) :clap; :yahoo;
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I don't know if I have missed something but this thread has become like a runaway train. I thought StarryNight16 was being serious when asking if any of us ever ask ourselves "Why me?". If that's about computers I'll move along then because I really know nothing about computers. :embarassed:
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I suppose that since there is no real answer to the original question, posters got their nerd on.
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Well I hope StarryNight16 has a sense of humor. Being that my husband has ESRD I know what it's like to feel overwhelmed by fear, stress and even anger and have often found myself asking the "Why me, why us" question. After reading StarryNght16's post, I thought he may be at that point. Wanted him to know it's okay to feel that way and that it's understandable to ask the "why me, why us" question. I brought his post up with my husband and asked him if HE ever asks himself "Why me?" and his reply was "Why NOT me?". His response blew me away. He isn't bitter whatsoever about having ESRD, altho I know he's been depressed over it. You'd never really know it tho. He goes about his life as usual. And he says dialysis isn't so bad or in his words, not so bad as some people make it out to be. He always surprises me like that. Then again, I've always known him to be strong and super positive so his attitude isn't so surprising but where he gets this strength....Anyways, I hope things get better/easier for StarryNight16 and his wife. It takes time. And maybe getting your nerd on can help, too.
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................ I really know nothing about computers. :embarassed:
I still have my pocket protector somewhere in a box in one of the closets.
I know how to turn on my computers. I just had to go around the house and turn on a lot of things. Big storm rolled over us and the power winked off just long enough to reset everything.
If I would not be such a cheep SOB I wouuld buy new batteries for the back-up power rig I have on this desktop. I've tossed the old gel cells many years ago when they died. Too cheep to buy those spendy batteries I put two new car batteries in marine battery boxes alongside it. I could run all this stuff for DAYS. Not any longer, their toast.
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Prime Timer, just to be clear, I agree with you that this thread has perhaps been hijacked. And I agree with you that it is certainly understandable...and normal...to want to know "why us". Your husband seem to be much more sanguine than I could ever possibly be. Kudos to him.
I've been accused by some IHDers as being something of a know-it-all, but I declare that's not true because I know nothing about computers, either. But I DO know what it feels like to be to depressed and even angry about having ESRD. And you, as a caregiver, PrimeTimer, know about this, too. :grouphug;
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I apologize for starting the nerd out. However yes it’s a serious question and we all have had to deal with it. My answer is it’s not the quantity of the days you have but the quality of those days. I suffer from significant cardiac disease, bad knees, and obviously ESRD. Occasionally I get angry at the doctors telling me what I can’t do, for example I currently have a tooth ache. Since last October I have been trying to get a dentist to treat it, I need a root canal, my nephrologist keeps sending letters to my dentist that since I am on Coumadin I need to be hospitalized for the dental work. I can’t find a dentist to work on me. Sooner or later I am going to go nuts and fly to Mexico to find a dentist. The best was 2 months after the heart attack I cleared the snow off of my driveway with a 14 HP snowblower the medical people went nuts. The only one who thought it was okay was my cardiologist. And as for dialysis I have a bunch of tee shirts that have dialysis quotes on them.
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Michael Murphy, we've all seen topics veer off course!
Your answer is a good one, one that I have to really work to live up to. It's easy to get overwhelmed and miss the good stuff of life while trying to answer the "why" question.
I hope you find a dentist soon.
Which quotes do your tee shirts have on them? Has anyone ever asked you any questions while you were wearing one?
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My favorite is Dialysis: Damned if you do, Dead if you don’t.. 5 kilos it was a hell of a weekend. Dialysis is draining. Dialysis is complicated (with a Fresinius machine drawn with labels like red button or Whitley thing). What happens in dialysis stays in dialysis.
Bunch more but these are the ones I remember. The 5 kilo one is the tee that gets the most comments, however it quickly ids the people who have some understanding of the process. Generally I buy them on Amazon.
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I apologize for starting the nerd out. However yes it’s a serious question and we all have had to deal with it. My answer is it’s not the quantity of the days you have but the quality of those days. I suffer from significant cardiac disease, bad knees, and obviously ESRD. Occasionally I get angry at the doctors telling me what I can’t do, for example I currently have a tooth ache. Since last October I have been trying to get a dentist to treat it, I need a root canal, my nephrologist keeps sending letters to my dentist that since I am on Coumadin I need to be hospitalized for the dental work. I can’t find a dentist to work on me. Sooner or later I am going to go nuts and fly to Mexico to find a dentist. The best was 2 months after the heart attack I cleared the snow off of my driveway with a 14 HP snowblower the medical people went nuts. The only one who thought it was okay was my cardiologist. And as for dialysis I have a bunch of tee shirts that have dialysis quotes on them.
Hello Michael,
I feel very sorry that you have tried to find a dentist since last October (!!!) ... and you are suffering from tooth ache as well ... I am so sorry and I do hope you'll be rewarded for your patience and find a good dentist as soon as possible and please take great care.
Keeping my fingers crossed for you and hopefully it gets sorted as soon as possible and I send you my best good-luck-wishes from Kristina. :grouphug;
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Hello, StarryNight16 here. To respond to PrimeTime, I was indeed feeling discouraged when I posted (both posts) and I'm still not sure about the answers. Why did this happen to us, and how do we keep going? I guess that there isn't any kind of decent answer, and that we just keep on going because that is simply what we do. And sometimes we end up chatting about Python and Cobol, and that's OK too.
I'm old enough to remember my mother bringing home unused punch cards from her Cobol and Fortran programming runs at work, and us kids used them to draw pictures and make paper airplanes. Good times, good times.
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Sounds like your spirits have been lifted, StarryNight16. That is always a good thing! :bandance; Gotta keep on keeping on. ;)
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Hello, StarryNight16 here. To respond to PrimeTime, I was indeed feeling discouraged when I posted (both posts) and I'm still not sure about the answers. Why did this happen to us, and how do we keep going? I guess that there isn't any kind of decent answer, and that we just keep on going because that is simply what we do. And sometimes we end up chatting about Python and Cobol, and that's OK too.
I'm old enough to remember my mother bringing home unused punch cards from her Cobol and Fortran programming runs at work, and us kids used them to draw pictures and make paper airplanes. Good times, good times.
Glad to see you have good memories about COBOL... :2thumbsup;
As far as your question, you are right, there's no real answer. For our daughter and all that's happened to her in her 28 years on this earth...I have taken one big thing away from it.
We enjoy every minute of every day-and try to not let the bad things get us down-as worrying about them doesn't do anything. None of us know when our time is up-so live life :cuddle;
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Thanks, Xplantdad. Every good word definitely helps.
Anyways, enough about COBOL and Python... my goal for this summer is to learn R using RStudio!
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Starry, Hello,
This is such an interesting post and I wish I had read it earlier. I am not on dialysis yet, but can only imagine what is worse. But I do know that the saying" God only gives you what you can handle" Is so very true. I am not here to preach to you, your relationship with God is your business. I hope it gets better for you and so many of the posters here say it is just a part of life.
Good Luck to you
Jean
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I love cobol, I spent years chasing performance issues on UNIX boxes. The problem I found is great programmers write phenomenal C programs almost every one else write average or bad code. The most common error that made me nuts was lazy people using system call to run a shell command ls to find directory content. The right way is to use the c subroutine to open the directory and load the contents into a header file. The amount of processing power used in the system call was staggering. On one system I had 59% of the code rewritten I certainly was not popular there. Unix cobol would have fixed the issue.
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So... does every discussion end up being about computer programming languages from the 70's and 80's? I'm just wondering...!
Maybe start a Geeky thread for the oldies? Like now? ;D
There is another web forum I visit from time to time that is only for people who think any computer that can run Windows (any version) is too modern. You occasionally see MS Dos machines talked about, but mostly older stuff than that (1980s and 1970s computers). It started as an Amiga forum and expanded to include all pre-Windows machines. Just before I went into hospital I got a "Wonder Swan" through the board, which is an old Japanese hand held games system (like Game Boy) that was never marketed outside Japan (as well as the chat boards, the forum also has a buy/sell board).
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Actually my OSX 10.13 systems are actually running a BSD UNIX variant. Several times over the years I have taken over the box and ran low level UNIX system commands at the Genius Bar to get my system fixed. They had usb boot drives it was easier to visit a Apple store which has current boot drives than go to the trouble to make them my self. So UNIX is not dead it is running on macs, suns, most super computers, some main frames, my iPad, and a rewritten version is know as Linux. In fact most of the financial world runs some form of UNIX.
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I never finished a project back in school that was written in DOS. Too many data banks and run sequences it too SOOOOO long to run. Processor speeds then absolutely sucked.
This Win 10 machine running at 2.8 G should spit it outwith a quickness IF it still had the DOS option like Win 98 had.
Also, I never did go back and finish that project. I might think about doing just that since I am retired.
But I have learned one thing since retiring, and that is that if there is anything you want to get done, you better do it before the WIFE knows you are retired as she will have you doing every little thing and you won't have time to do anything you want done.