Coping with failing health

[GoodWishes]

I am very sorry.

I have several health issues for years and I have seen many doctors. I found that doctors' knowledge and skill vary a lot.

For one of my problem, the first specialist didn't offer much help, the second specialist offered some options which I tried but said surgery was not an option, the third specialist did surgery. Not only that I recovered nicely in two weeks, this problem is now gone.

For another one of my problem, I now see a highly specialized doctor who is also a professor/researcher at a top medical university. This problem is under control which is already a big improvement.

The point being keep trying different doctors/medications, keep trying different options including alternative medicine, exercise (especially relaxing type of exercise like deep breathing), diet, etc.

Support group can be very helpful. Keep a positive attitude. Get plenty of help.

I wish you and your wife the best.

[spncity]

So sorry you are going through this.

Support groups - you may have to try more than one to find something that fits you. I don't think they even expect you to 'share' if you're not ready to do so. You likely need different support groups - one for your DW and one for you, the caregiver.

Google natural pain relief to see what might interest you.

I'm a big fan of soaking in a big tub of water to help physical pain and/or mental stress.

At different times for different things, DH and I have benefited from acupuncture.

Hang in there.

[athena53]

Quote:

Originally Posted by bclover not sure if your wife has heard of this, but a friend of mine hangs out at lifewithlupus.org it's very much like this site, an on line support forum. tons of information Wishing both of you much love and health

I was also going to recommend on-line support. DH was on a forum for polycythemia for years; he even learned of the two experts in the US from that group and made a trip to Johns Hopkins to see one. He learned a lot. Right now I'm on one for people with Acute Myeloid Leukemia and their caregivers on FaceBook, which I joined after the polycythemia morphed into AML. I'm still on there because every case is different and people can learn from my/our experiences. You do have to prepare yourself for some worst-case stories. It's ideal for introverts, though!

What we've found over the years is that sometimes the best information comes from people who actually have the disease.

[Moemg]

So sorry to hear about your wife's struggles . Dealing with failing health is rough and even online support is better than no support and may help her find some options .

[littleb]

Quote:

Originally Posted by athena53 I was also going to recommend on-line support. DH was on a forum for polycythemia for years; he even learned of the two experts in the US from that group and made a trip to Johns Hopkins to see one. He learned a lot. Right now I'm on one for people with Acute Myeloid Leukemia and their caregivers on FaceBook, which I joined after the polycythemia morphed into AML. I'm still on there because every case is different and people can learn from my/our experiences. You do have to prepare yourself for some worst-case stories. It's ideal for introverts, though! What we've found over the years is that sometimes the best information comes from people who actually have the disease.

OP

First, let me say how sorry I am about your wife having lupus. It seems she had many years in remission and now it is digressing into other areas of her body. Like many diseases lupus can be mild or severe. Also, you can have great times in remission and then the flare ups can be debilitating.

Education is helpful in understanding any medical condition. The recommendation of online lupus forums is a great idea to find people who understand completely what she is going through. Mentally and physically. She will even find out about new medicines or at home treatments that may help when the lupus is not in remission. She is an introvert which is perfect because you can become a member of a forum and participate when the time is right. Or she can stay a lurker but still learn so much about lupus. She will gain so much more by not feeling alone. Even with your support you cannot understand all the emotions that come when this disease starts attacking different parts of her body.

My mother was diagnosed with lupus at a later age in her 40's. She had a severe case and was never in remission. I understand the pain of watching someone you love go from strong and energetic to sick and wrecked in pain. I wish there had been more education 25+ years ago when my mother was diagnosed but it was not a well known disease back then. There was only support groups and like your wife my mother was an introvert.

My heart goes out to her and to you in trying to understand and support her during this time.

[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]

Quote:

Originally Posted by athena53 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.