Would you change it?

[st789]

Yes, change the experience of this p*cking disease without a doubt.   How would anyone like to stay in the hospital for one month and vomiting every morning?  I feel like I have never fully develop my personality since the day I got diagnose with kidney disease at the age of 16.  I am more reserve and quiet when dealing with others.  I feel like I live for today only and suppress a lot of emotions.  Basically, I am p*cking not happy with how my life have turned out so far.  Excuse my language.  Sometimes, I just pray to God to get me through the difficult times.

[Falkenbach]

You don't need to "excuse" your language (at least not for me - guess I can't speak for others) because being angry is a pretty natural part of all this and you should be able to express it.

[st789]

Thanks for understanding cycobully.

[mrhecht]

Even if you assume that God exists, it is extremely difficult to determine which human tragedies could be consistent with his 'higher purposes' or not, since he has to be assumed to be an entity more weird than our wildest nightmares, given the horrors he imposes on innocent children by the tens of thousands every day.  Just consider what his purposes might be in the case of infants born with Hutchinson-Gilford's Disease, which causes them to age very rapidly, so that by the time they are teenagers they have cataracts, arthritis, two hearing aids, thick glasses, complete baldness, numerous diseases characteristic of 80-year-olds, and the appearance of a tiny plucked chicken, as it has been described.  On top of this, God gives them an extraordinarily rapidly developing intellect, so they can savor with exquisite torture the full horror of what they are experiencing, until they die of a heart attack, usually around age 20.  Can anyone tell me what the divine purpose of this is?

We live in an imperfect world where good and evil co-exist. There is a God, the source of all good things, who loves us too much to intentionally hurt His creation. There is also an enemy of mankind who by contrast, hates us and is the source of every unexplainable horror here on the earth. God does not teach us through bad experiences; He teaches us through His words, handed down through time. Religion has used the spectre of a punishing God to control people. If earth was free of troubles, it would be called Heaven.

[angela515]

Even if you assume that God exists, it is extremely difficult to determine which human tragedies could be consistent with his 'higher purposes' or not, since he has to be assumed to be an entity more weird than our wildest nightmares, given the horrors he imposes on innocent children by the tens of thousands every day.  Just consider what his purposes might be in the case of infants born with Hutchinson-Gilford's Disease, which causes them to age very rapidly, so that by the time they are teenagers they have cataracts, arthritis, two hearing aids, thick glasses, complete baldness, numerous diseases characteristic of 80-year-olds, and the appearance of a tiny plucked chicken, as it has been described.  On top of this, God gives them an extraordinarily rapidly developing intellect, so they can savor with exquisite torture the full horror of what they are experiencing, until they die of a heart attack, usually around age 20.  Can anyone tell me what the divine purpose of this is?

We live in an imperfect world where good and evil co-exist. There is a God, the source of all good things, who loves us too much to intentionally hurt His creation. There is also an enemy of mankind who by contrast, hates us and is the source of every unexplainable horror here on the earth. God does not teach us through bad experiences; He teaches us through His words, handed down through time. Religion has used the spectre of a punishing God to control people. If earth was free of troubles, it would be called Heaven.

You may believe in God, but how can you just say it's true and a fact when there is no proof... only faith. The Bible is not proof.. the Bible was written by man.. and stories were put in it, and stories were left out... man chose what was added and what was not... where is the proof?

I believe in God, but I do not go around saying it's fact, because not everyone believes in God and in reality, there is no proof he exists.

[brenda]

I personally know a littel girl Ashley Hegi who has Progeria. Ashley is now 14 years old, has the appearance of a little old woman, heart problems, no hair (but loves her hats), loves fishing and quading one her own little guad, helps take care of her two baby brothers and has more zest for life than anybody I know. Everything is Ashley's world is far from perfect but you would not know it if you met her. I love spending time with Ashley she is so fun, everthing to her is funny, she is very talented with her crafts, and she is a good reminder for me when I feel down that my life is not really so bad. Cruel god, I don't think so and neither does Ashley, she has given so many people such joy in her short life, she touches everyone she meets. All these children born with special challenges have very special purposes. You can read Ashley's Story her on the net just by typing in her name.

[Falkenbach]

I watched a recent story on progeria on tv, it was quite heartbreaking and inspirational at the same time. What wonderful little kids they all were, even in the face of losing their best friends (other progeria sufferers from around the world) on a regular basis, and suffering their own cruel condition, they could still smile and see the good in things. Much tougher than I could ever hope to be, these kids.

It doesn't take much to make me feel sorry for myself. I spent most of last week's stay in hospital bawling my eyes out, especially when my husband got sick and had to stay home, so I had no visitors and was isolated in my room because of infection risks. I just cried the whole time and thought "why me?". Perhaps I should have given some thought to people like those kids, to help me through a bit better.

[angela515]

Everyone has a right to feel down about their situation cyco... 

I spend my time in the hospital (when i'm admitted), to sleep, since i'm a single parent, I don't get to do that much, and especially don't get to just sleep whatever time of day I am tired and want too... so I use it as a "retreat" even though it's not a spa.. at least I can be by myself for a few hours and sleep.. 

[Falkenbach]

Unfortunately, the hospital bed just about destroyed my back. My last 2 days or so there, my lower back was in almost non-stop spasm, so that put an end to any relaxation or proper rest! Once I got home and started sleeping on my own bed again, my back recovered almost straight away.

I can understand how you use hospital time for rest, though. I've never been a parent, but I imagine it's extremely hard work, especially when you have illness to deal with as well. I'm sure you wouldn't swap your kids for the world, though 

[angela515]

Oh I definately understand the bed and back pain though...!! I am lucky to be on pain meds for bone pain everyday, so i get that every 4 hours in there, so it makes it more comfy for me, but yes definatly without it.. I know what u mean, and my own bed is always a comfort to get back too

[lcamanini]

I would absolutely change it. I'm only 21 years old, and my life was just starting to go where I wanted it. When I was diagnosed I started dialysis immediately. I had to quit my job, and I found out I will probably never have children. (My disease is autoimmune, so kidney transplant is most likey not an option). I feel like I've lost my life, and I don't know how to get it back. When I think about being on dialysis for the rest of my life, I just want to scream. I can't do much of anything that I could do before. I don't feel like I've learned anything new in this process. Now I just feel fear for my future and what will happen to me next.

[Falkenbach]

I was diagnosed with CRF when I was about 22, but I was very lucky that I was nowhere near end-stage, at that point. It was discovered by accident. I didn't know what to expect, though, which certainly led to a lot of fear, so I can understand the fear side of things.

Illness *does* make you feel robbed, there's no denying that.

[st789]

Living with chronic illness is the uncertainty of what tomorrow will bring.  One could only play the best hand of cards available and leave everything up to the one up there.

[angela515]

(My disease is autoimmune, so kidney transplant is most likey not an option).

What autoimmune disease do you have? I have had 2 kidney transplants so far, and I also have an autoimmune disease, so that's why I am asking.

[Romona]

(My disease is autoimmune, so kidney transplant is most likey not an option).

What autoimmune disease do you have? I have had 2 kidney transplants so far, and I also have an autoimmune disease, so that's why I am asking.

Me too! I was diagnosed with FSGS. I also had a transplant.

[angela515]

(My disease is autoimmune, so kidney transplant is most likey not an option).

What autoimmune disease do you have? I have had 2 kidney transplants so far, and I also have an autoimmune disease, so that's why I am asking.

Me too! I was diagnosed with FSGS. I also had a transplant.

I don't know much about FSGS, can it go in remission? If so, did you have to wait for it to go into remission to be considered?

I am wondering if this is the case for lcamanini. Maybe they were told there disease needs to go into remission before they can go on the list or w/e...

In my case, Lupus has to be in remission in order to go on the list, otherwise... it will just attack the new organ right away and that was a pointless wasted kidney.

Thankfully I went into remission as soon as my Lupus made my native kidneys completely fail... it's as if it set out on a mission to attack and murder my kidneys, did it's job, and said good-night.. 

[lcamanini]

Well, my diagnosis is kind of complicated. Originally I was diagnosed with MPGN type II (also called dense deposit disease) which is a rare autoimmune disorder that attacks the kidneys and the eyes. Then they came back and told me that I don't have that; instead I have characteristics of three different diseases. I can't remember what the other two diseases were. So instead of being diagnosed with one disease, I'm diagnosed with partially having three, I guess is the best way to put it. My nephrologist said that my hospital, the hospital in Iowa City, and Mayo Clinic have never seen this combination of diseases before so they don't really know what to expect from a transplant. But he didn't sound too hopeful. I'm going to Mayo Clinic on Oct. 23 to have a bunch of tests done to see if I could have one though, so hopefully I'll find out some good news.

[angela515]

Hopefully they tell what three diseases you have or may have... that's important, a patient should know what they have going on with them and what it's called.

Good luck.

[Falkenbach]

That sure does sound complicated. 

I really hope the tests bring some good news.

[George Jung]

I had a discussion with a friend of mine tonight about me and my health.  We discussed the lessons I have learned and how I could have figred out the same things without having to go through all of this crap.  I talked about how it doesn't balance out.....the suffering v.s. the lesson learned.  During this conversation something was realized. I was missing information, I have not been taking into account all of the effects of my situation.  Everything was based on myself, the kind of person that I am, and who I have become.  It was discovered that a very important part of the equation was missing.  It was discussed that I should also be taking into account (in the balance of lesson v.s. suffering) the effect on the people around me.  I had a realization that I had been looking at the equation from a selfish standpoint and not at the bigger picture.  If I account for my friend giving up cigarettes to improve his health, people signing donor cards, friends embracing their lives, their loved ones, and realizing how important it is to live in the moment while questioning what is truly important to them, then the scale starts to even out a bit.  I don't know, by the time I am done here in this life and all of the data has been collected then it may be possible for the equation to actually be balanced.  This was a perspective that I had not viewed before and I thought it was worth sharing.

[goofynina]

Thank you for sharing that George, it also helps me realize what i have done for others (due to my illness).   What an awesome conversation that must've been, i am so thankful to your friend for helping you realize that there is some good in this damn disease, even though we are not able to benefit much from the goodness, we can get others to and that is a very comforting thought to me.   

[brenda]

Those are great thought's George. I myself just have to keep believing something good will come from this disease. Not necessarily for myself but for others around me. If it is only awareness I guess I am good with that.

I do know at the time when I started dialysis my kids were just in their early teens, starting to get in a little shit once in a while. Once my machine was at home, it didn't take long before every Tuesday and thusday evening my dialysis room would fill up with my kids and their firends to watch movies. Sleeping bags and blankets wall to wall in my little room. Some of the kids even started bring their own movies they rented. I got to know my kids friends well and it kept them all inside being safe and not getting in trouble. I miss those days. I always believe if the neighborhood kid's are at your house all the time then you always know where yous are.

[Falkenbach]

Thanks for sharing, George. They are very special considerations indeed. I had considered those around me, to a degree, but I was more worried about the negative impact it had had on them (e.g. the worrying my family have been through etc) but there can indeed be positive effects on them too, and I hadn't even put this into the equation myself.

[George Jung]

I know what you mean about the negative effects on others and I AM still torn/confused about the question.  I simply realized that my main focus had been a selfish one (for me) considering relationships lost and destruction to my life.  Also not to be all "look at the bright side of things" type of person (I'm not really a chippery type of person) but there ARE two sides to every coin (as much as I hate hearing crap like that) and when there is a negative there (according to science) is a positive.  "For every action there is an equal and opposite reaction," which may be truthful.  I have lost relationships.....but......I have gained some too (IHD among others) and I may not even ever know the positive impact that has had.  I do know some of you have influenced me in a positive way so that has to count for something and there are a lot of lurkers that may have taken something they desperately needed from my/your experience.  I really don't know but the main thing I got out of the conversation was a feeling of a bit of selfishness.  If my Uncle is going to spend less time at work and more time with his little girl because of realizing how delicate and precious life is then I will take that positive, even if it makes me cry because I don't understand why it has to be at my expense, and I will consider it in the great scheme of things.

It should be noted that these are just thoughts, I don't necessarily think they are right or wrong, simply an idea.

Brenda, something good will come but thats not to say that it will be for us.  Then again it may all just be bull shit too and we all just got screwed?

[paris]

George, excellent thoughts!  I hate what this disease has done to my life. I have lost my health, my job, friends and even my church.  BUT, I know at least one person has been positively effected by me having this.  My sweet Beth knows that NOW is what is important. She is grabbing life and living as fully as she can.  And people on IHD have no idea how much they have helped me in a positive way.  Especially Epoman.  Would I change it?  I would change many things in my life, but then again, those are the things that made me who I am.   I do wish I had known earlier that I didn't have to do everything myself, things didn't have to be perfect.  I spent too much time worrying about pleasing the world around me and no time taking care of myself.  Hopefully, those are lessons I can pass on.