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.