How I reinvented my life after GCA.

[nallufl24]

I had already retired as a Flight Attendant from a large commercial airline. I then went on to a part time job which I absolutely loved. I always said I was never going to stop working. I was healthy and could literally run rings around the younger employees. Life was good and I was so happy.

4 months before diagnosis I kept getting little subtle symptoms. Of all things I kept getting nausea. I went to my regular doctor for tests and everything was normal. I went to a gastroenterologist, gynecologist and orthopedic surgeon because my back hurt. Everything was normal except I had a slipped vertebrae. Every day I was getting worse and worse. I couldn’t function and slept all day. I had blood work done and nothing was normal. Inflammation levels were sky high. I was severely anemic and had low blood sodium. I went to a hematologist and still no one could help me. When to ER. I was admitted and no one seemed interested in helping me. Was released and went to a large hospital system’s ER. I then saw psychiatrist, neurologist, etc. it went on and on. Finally I saw a rheumatologist who guessed it. I had a biopsy where GCA was confirmed. Looking back, I’m appalled no one could figure it out. I admit I didn’t have the classic symptoms. No jaw pain, no bulging temporal artery, just a slight headache and no eye involvement.

After 2 years I’ve finally been able to accept what I have. Work is something I will never go back to. I’m happy again. I spend a lot of time with my daughter’s family and go out to lunch frequently with friends. I have limitations. I’m not as active as I was. My arthritis is worse and so is my back. I have accepted the fact I can’t go hiking, skiing anymore. I spend a lot of time with quiet activities. I walk my dog everyday, read, try to paint (I’m not a talented painter Haha).

Anyway, there is life at the end of the tunnel. I never thought I’d see it again but I’m happy and content. I’m thrilled I survived. In the beginning I felt I’d be gone soon and frankly didn’t even care.

I’m only on Actemra which helped give me my life back but if I had to back on prednisone I would. I at least know a little more to expect.

Good luck to all of you and keep going. It will be ok.

[MarkWin]

I sympathise. I had a fantastic job that I loved. On the Tuesday felt bad, by Friday (being a man) I went to GP who took bloodtests, by the following Monday I was in hospital - for several weeks - with CRP of >180 that went to >350 whilst in hospital. No jaw issue, sight issue, temporal issue and noone seeming the wiser. Eventually let out with bag of steroids and other muti and possibility of GCA, though noone actually said so. So I returned to work full of 60mg a day, and soon collapsed again. End of job and end of 'getting better', so now trying to 'manage' LVV/GCA, though noone actually said what the issue is. I am now 64 having had this issue for 7 years. Am on 2mg PRED/day, 20mg MTX weekly, and some other stuff having been and done AA, AdCal, etc, but just getting along fine. Resigned to not working as fatigue really awful, and am volunteering in conservation organisations locally. Thankfully have a (very) small pension and getting along on basics, but life really did take a change from full on to pottering along in slow lane, and just thankful I have enough to get by, but there seems to be nothing so important as health and am glad that you are happy and content.