I am a 42 yrold male married w/3 children.
I was diagnosed with esrd 3 years ago and have been on dailysis for a year.
I have been disabled since 1989. I suffer from 1. asthma 2. sleep apnea 3. morbid obesity (500lbs)4. esrd.
before I was on dialysis I was on Prednisone for my asthma. all along I have numerous day to day bouts with "moody-ness" and outright pain.
My gfamily has been through alot dealing with my illnesses but I have too.
through it all I have been a "house husband" dealing with all of the usual and not so usual tasks of rearing 3 children while at the same time ttrying to be a decent husband and also worked out of my home to help my children through a career in entertainment. That means hitting the highway for auditions, lessons, and whatever it took. Now the children are half grown up ( my youngest is 12) and they are successful in their careers. my wife thinks I complain too much and always have something wrong with me. I have been acussed of being evil and thoughtless.
No one here knows how this disease works and when I tell my wife how I feel from day to day she uses that against me. somehow she cannot seem to realize the stress that is constantly on me. will someone please explain it to herhow this disease is eating me alive. in the past I have been short to listen to her problems at work because to me I notice that whenever I listen to them I would tend to offer my opinion for a solution which would always seem to be unwelcome.
it is true that I am guilty of being short on patience but how many times tdo you have to tell someone to close the refrigerator or clean up your room?
It is no secret that I run the house and I want things done a certian way, but I am no "neat freak" or "knit picky" i just want average respect to the furnishings so that we don't have to rebuy stuff that supposed to last. ie carpeting, walls,toilets,
but all in all she thinks I am extreme about my home management.
recently she told me that she didnt want to be married to me anymore citing that I treat her like crap and all I do is yell at the kids.
while its trrue that I do yell.( especially at the kids) but she is not there 24/7 to see any of my other interactions with my (step)sons. they have been homeschooled since 2nd grade and 6th grade. I have been the one to take them around the country for their careers in the entertainment field.( for over 8years now)I have been spending 24/7 with my guys and they at least understand me and my moods.
But now of all times when I can spend some time slowing down and get my health stable I am hit with this crap.my question.
Can someone please explain to me why I am having so much trouble keeping it together?
at times I feel rage and at other times I am so tired I cant evem talk,or walk or even chew my food.
what can I say to my wife to make her understand? she's the one that is wanting us to break up, shes says that she cant take it( all the noise and drama) anymore.
I need help if you can help me please write me at:
roadmgr@aol.com
I have worked my butt off to help our kids and us be in a position to be paid for our art and music so that we can be financially independent for future generations. that is happening right now. now we have a chance to work on our relationship even more and she want to go separate ways. this is complicated by the fact that now we cannot afford to live separately. so we are staying together until some money comes in and we can afford to separate?
this is killing me, I am ready to stop my dialysis and all other meds because I already feel dead. physically, mentally, socially, financially,medically, and now spiritually.
what can I do? what am i supposed to think? how am I supposed to feel? how can I make them understand I am having a daily "Life and Death" struggle to stay stable.
Please help me!!
Am I the only one going through this?

Road, I hope you consider marriage counseling. I also hope that you change your mind about quitting treatment. It is entirely possible that you are too controling around the house. I have worked in healthcare for many years; one thing I have noticed with my patients is that when they loose control in one area they make up for it in other areas, often without even realizing it. I work with home care patients who micro manage their home environment. I'm in esrd myself so I know what a strain it can be. Try not to become your disease! Good Luck, and I hope things work out for you and your family!

I have found that once I started dialysis, I had to learn how to be selfish. I went from being Mother Teresa to being focused on ME and my health. My thought is; my health first or I'm dead. The idea is to take control of your life, your trearment, your diet, your nutrition. Read this web site as much as possible. Information is power. Do whatever you can to knock your weight back. dialysis puts enough strains on your heart and arteries. Marriage counseling should help your mate understand your needs, but you have to see to most of your needs to be in control of your condition. Dialysis only maintains life, you have to fight to keep a status quo. Whatever you can do to drop your weight will make a difference in your longevity. Good luck.

How much prednisone are you on?

When I had my transplant, I went from being a meek, quiet person who never stood up for herself, to being a raging bitch who couldn't control her temper! It was a damned nightmare! Overnight, the whole family dynamic changed because my family couln't exert the same control over me as they were used to. It took a long time to adjust to it, and even though I stopped the prednisone when the kidney rejected in 1994, I still have the 'prednisone personality".
I refuse to take any more of that stuff-- that's hy I took my name off of the transplant list and went back on hemodialysis. At least I know I won't be psychotic on dialysis.