Coping with failing health

[outdoorgirl02]

I am so sorry you are both dealing with Lupus. I have a few autoimmune diseases and they can be brutal. In my experience, getting 2nd and 3rd opinions from Rheumatologists has been helpful in determining the best medications to try. Also, my main rheumatologist wasn't big on running further testing but when I got a 2nd opinion, that dr ran more thorough testing which revealed a few other health things that were likely making me feel worse.

There are some fantastic Facebook support groups for Lupus where you can ask questions and talk with others who are going through a similar experience.

 

[Bamaman]

My wife was the chemistry supervisor in a large hospital laboratory and later worked in a very large medical practice. Suddenly, she started running a 103 degree temperature at 1:00 p.m. daily. She ended up at an AIDS doctor in Atlanta--the diagnostic doctor of last resort when no one else can figure out a health issue. She finally got better--many years later. She had a mono-like virus of unknown origin--obviously caught from processing chemistry tests (blood or urine) from a very sick person.

My best suggestion is to find that Superstar Physician in your market. Sounds as if she needs a team of doctors with numerous specialties to address her issues. For those with good insurance, the very best doctor costs the same as having a doctor of lesser quality.

Pain is the body's way to tell you that some changes need to be made. And one thing always comes with pain--serious depression. Having eyesight problems can also cause withdrawal from society.

Best of luck to you. Sounds as if you're addressing the pain first--and that's great. Just hang in there, and hopefully things will improve.

 

[Koogie]

I was also going to recommend on-line support.... You do have to prepare yourself for some worst-case stories.

I would agree with and caution the OP about the second part above.

I would also slightly disagree with the prevailing wisdom and warn the OP that online forums specific to your DW disease might not be for you (or for you both) because they can be terribly upsetting and if you let the stories of other peoples conditions get to you, depressing enough to worsen the situation.

My wife has a hereditary degenerative neurological disease (similar to MS) but is somewhat rare and untreatable (a true "orphan disease") She was diagnosed in her mid thirties and is now in her early fifties. It follows no predictable declining path but moves in fits and starts. She also has good days and bad, good years and bad.

It took us a very long time to come to terms with it. Frankly, I still don't think we are. We took advice early on to get into forums for support because so few people have the condition. We went online and joined one forum. The majority of people there had much more advanced symptoms (wheelchair bound, unable to perform daily functions or in extreme examples incapacitated)

It frightened and depressed my wife incredibly. Her symptoms at that time were not severe (and might never be that severe) but she was so badly shaken by the experience that it put her into a tailspin emotionally. I didn't do a helluva lot for me either.

It took her a long time to recover from that. She has started to occasionally go on the forum again (over 10 years later). I never have.

Again, this might not apply to you. Or your wife. But it might. Just be careful and be aware of the emotional impact it might have.

Other than that, take care of yourself. Being a caregiver, especially as a man, is never easy. There are lots of statistics about men who leave when their wives get sick. We have known people it has happened to. Take the time for yourself that you need, blow off steam when you need to and find someone to talk to. You'll be better off for it and by extension so will your wife. All the best.