Thursday, October 7, 2010

ramblings and rantings of a semi sane fool

      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.

Monday, October 4, 2010

curing the crazy's with truth....WHOOSAH

   What to write, where to go with this. Should I go sarcastic or sad emo bitch, maybe tough guy who fears nothing? I've been all these things and they all where lies. Should I chat about pain and suffering? The dos and don't of a terminal disease? I haven't done much right but dear Jesus do I  have the wrong ways down pat. Seems like the last thing tried , the very last thing attempted - the simple and easy thing I try last ...Is the only thing that works.
   Prime example,I waited seven years to tell anyone about it. Waited till I was crazy with pain and fear.... Truth is I waited till I was having surgery okay, it was the third  surgery then I begrudgingly   told anyone. I was toxic and weak. thinking the whole time that it was the strong thing the man thing to do.  Now, with the cat is outta the bag... everything is easier... they still think I'm nuts just  not nutty nuts instead it's,  "Damn George, this shit would get Gandhi slap a girl scout."
   I never thought about how selfish it was to let my friends and family worry about me. Not knowing what was what. My strong way was so the wrong way. Believing that I had suffered in silence and to find out my silence was deafening. No matter how far i pushed or fell outta grace with my actions some stayed. They are still here and they are not going anywhere. As for the ones my actions forced outta my life now have time to make some amends and attempt to make it right.