This, a good morning the coffee hot, black as Satan's heart, and scotch a damn fine creamer. Yesterday got word from SSI disability that i need to see their doctors, apparently Duke, Ashville, University of Kentucky medical and West La medical aren't enough. So more tests, the same tests and explaining to yet another man , person of medicine what my illness is.
The fucked thing about a rare disease is most of the people have not dealt with this since medical school. They call LCH a orphans disease, when I first heard this I thought of Oliver Twist " Please sir, I want some more." In the place of porridge I'd like some treatment.Orphans disease translation- few have this, sorry, you are fucked. There is an option - I'm still waiting for approval from the VA for a trial at the Mayo Clinic. Great place for this thing. They have actually cured a few people, slowed the progress in others , back tracked it a bit in a few, and not "that" many died. Fucked thing this is hope and hope is good. Fighting is great and beating the odds amazing. I remember when I first heard of 2- CDA chemo and its promising potential I had a mild anxiety attache. I owe the IRS 120 G's and will never have the gigs I once had to get out from under the debt. Then , I laughed and thought.... Quality problem.
So, now I pray to be allowed to spend six months in Rochester, MN during the winter (-20) doing chemo. I remember once praying for things like, her or it. Whether it was a shinny new bike,a Oscar, Twu-lub, Stephani Palmer in high school or Julie Burns is kindergarten (many, MANY, far too many others), and a gnome that would magically do my home work. Funny thing, I do not pray for the Mayo Clinic, or healing, or any of the things I maybe should be. Instead I pray to be a better man- to live with dignity, to be less selfish, zero tolerance for the why mes or not fairs,and more man of the moment. Try and fail try and try and try. This is what it is.