September 18, 2014 Been a long time
I haven’t posted in a while. A discussion on one of the GVHD forums about Fatigue prompted me. I thought my fatigue was because of the persistent low RBC. Turns out, other transplant survivors with “normal” RBCs also have it. But they also have Chronic GVHD, which (touch wood) I don’t have at present. Turns out they also have elevated Creatinine levels and have to drink a lot. I love the forum; it helps me know that what I am going through is par for the course. The heart breaking posts are those from parents of young children, or those who have just lost a loved one.
Advice from doctors: exercise and stretch. Been doing that. And Yes, fatigue is lessened after some exercise, and the stiffness is eased. If I don’t stretch in the morning, I really feel it in my legs when I get up after sitting still at my desk for some time.
What else is going on? At my last check up my RBC was up slightly. Hopefully a trend that will continue.
I still have the lizards. I tried going back to the amitryptyline but the side effects were still there. Numbs the pain a little but makes me a zombie. I threw them away. I’ll live with it. I stopped taking Lipitor because the side effects were horrible. I still take Allopurinol because my Uric acid level is high. But no steroids or immune suppressants for months now.
I have a right shoulder rotator cuff problem. Been getting physiotherapy for it and it has helped a lot.
I went scuba diving again. Probably a really stupid thing to do because of the infection risk but I had a great time. Did 4 dives in 2 days and coped just fine. Getting the BCD on was tricky because of the rotator cuff problem, but we managed.
I read a report recently which said that standing up is good for anti-ageing. Great! If I stand up for long periods my legs almost lock up. I was at a reception last night and really, really, wanted to sit down during a speech. But I was right in the eye-line of the speaker so I couldn’t shuffle off and collapse gratefully on a sofa until he finished.
Three months to go to the third anniversary. Another major milestone coming up fast.