Originally Posted by
Al
Debra, I do not have nearly the problems that drz and many others have. Not that the disease is friendly for any of us. But I would like to keep my own travails in perspective. I may be a Sick Old Man, but I am incredibly lucky nevertheless.
Al
Originally Posted by
Lightwarrior
After everything that you have been through, your strength and spirit. My bets are on you, you will finish the ten year agreement and need to sign up for another ten years.
I was going to start a new thread and call it "Things do get better" but then I felt sad when i found these two posts by two of the nicest people I missed dearly from this forum even though i never met them in person. Yet, I felt I knew them and that they knew me better than almost anyone else I know. So I may now have to call this post "Things CAN get better with treatment"!
I saw my Wegs doctor yesterday and got another good check up. It has been six months since I had elevated inflammation markers along with any troublesome symptoms like more blood in sinus rinses, joint pain and increased fatigue. My residual symptoms increase when they are exacerbated by any infection. I call these periods a mini flare but my doctors don't regard these as serious if i can get them under control with an antibiotic for a few weeks and slight increase in steroids and/or my maintenance azathioprine.
I always have the usual residual Weg stuff like excess mucous down the back of throat, lot of fatigue which I think relates more to my kidney damage, lung damage, neuropathy. loss of balance and serious diabetes but generally things feel good to me. I have developed more problems with skin lesions with two new weird or rare pre-cancerous lesions that need to be biopsied and frozen when they appear. These result in people with poor immune systems like people who have diabetes and/or take immune suppressant drugs. This requires more trips to my dermatologists but this seems a minor problem to me. I am very grateful my kidney and lung function remain stable in their impaired condition with no major changes in past two years. My hearing was greatly improved by the BAHA operation and my other hearing aid. I have really enjoyed several music concerts in past few weeks. I believe I can now hear music well enough to dance to it if my feet could keep up with my hands. I also can appreciate my fringe benefit of sleeping through noisy problems that bother my neighbors. "What sirens" "What chain saw" "When was the storm" as I don't hear such things at night when i remove my hearing aids. I can't hear much in noisy settings or outside with a significant wind but I now longer feel isolated by being almost deaf or seriously hearing impaired.
We are now enjoying some beautiful Fall weather. Our trees are in midst of their vivid color change, our temps are perfect for being outside, and our nights have been cool enough to get rid of the mosquitoes and most other problem bugs. It is great to be outside now walking in the woods. I now feel comfortable walking a quarter of mile at slow speed to enjoy the scenery and believe I can go a half mile or more if necessary. Pulmonary rehab and vestibular rehab helped me a great deal in feeling more comfortable walking even without a cane. I don't do any five mile hikes or ten mile bike rides or ice skating or cross country skiing anymore (at least not yet) but I can still enjoy a short walk to appreciate nature. I often do a little geocaching as an excuse to go on a short walk with nice scenery. This all so much better than sitting in wheel chair in a nursing home or hospital or being too exhausted to get out of bed.
I have arranged a pretty good health support system for myself which involves a dozen doctors at six different clinics. One is a world known expert on GPA at Mayo so i feel I am getting good medical follow up and care when needed. I think my amazing recovery makes me a good subject for their longitudinal study on treating GPA. I usually have some medical appointment once or twice a week, take lots of meds every day, have to check my blood sugar every hour or two and make adjustments in my insulin pump, but still regard myself as being in pretty good health when compared to three years ago since I have had a miraculous recovery and major improvement. I know that my health is very poor compared to most people my age so I don't have a delusional loss of reality, but I am very grateful for what I have now and what I can enjoy today. My pred is down to 5 mg so i don't think I have any major delusions of adequacy right now or manic euphoria like i did when at the real high doses in my first year. So, Yes, things really have gotten better for me. I have not had any urinary tract infections since my operation to fix my bladder last year. My vision is better, not perfect, but better. After cataract surgery a year ago I now usually get by with out my glasses except for reading small print.
I used to enjoy traveling but in past year I have only had one short trip but am starting to entertain thoughts of trying some more short trips and traveling just for fun, and not just my medical trips. I think a short cruise might be best for me so I could rest often and nap as needed.
Celebrate what we have now and what we can do today to enjoy our lives. I think that is the best way for us to honor the memory of Al, Jack, and Lightwarrior.
Last edited by drz; 04-07-2019 at 09:55 AM.
Knowledge is power! Wisdom is using it to make good decisions!
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