Frustration

Yesterday was another long marathon day at MGH. First a visit to the gyno then my doctor. It was a productive day but, it seems as thought the monster that is GVHD is back. Yes folks, the vaginal GVHD is back. So, back to the Clobetasol. I really thought I had put that behind me, crossed it off the list of stuff I have to deal with. Not so. Grrrrrrr.... Also, the cramps I've been experiencing in my hands, feet and back are still hanging around. The new drug, Cellcept, has taken them down a notch but they aren't gone. Not by a long shot. Last week I had a nasty cramp in my foot in the middle of the night. Woke me right up and took an hour to get it to release. It was brutal. My doctor says it make take quite awhile for the cramps to subside. Heck, they might never subside. I may live with this forever. Ugh..... And, my case of GVHD is mild, that's right, MILD. I can't imagine what people with moderate or severe GVHD do. It is the nastiest rollercoaster. Up and down, this drug then that, good one day then bad the next, gone then back again. So goes the life of a bone marrow transplant patient. So, all in all, I have a game plan moving forward which is a very good feeling and I am tapering off the Prednisone for good in a weeks time. Cross that drug off the list :) So, I do what I always do when I find myself frustrated during this long, long journey back to health; stop, remember how far I've come, remember those who have fought this disease and lost and find the ever flowing spring of gratitude inside me for the very fact that I am alive.