Saturday May 27, 2006

0
Thursday night I sleeped super shitty, we moved the bed it looks really nice and makes the room look bigger. Corneilus_wright brought over his feather bed and we put that on the bed. Now I should be sleeping like a princess but noooooooo...we went to bed at 11pm I had to get up at 5:45am more on that soon. I woke up at 1am, 3am and then when the alarm went off. UGH!

why was I up so early? I finally got to go to my screening smile

I was dignosed with MS in July of 2005. My neurologist recomended that I get on meds as soon as possible. I was diagnosed last year, but have had MSsymptoms as far back as four years agoshocked My neurologist told me at that time, of a great study that was going to be starting up soon. He told me If I wanted to participate in the study I should be on meds by september 2005, and no later than the end of the year, but even that long was highly unlikely.

Enter the research cordinator Michelle Khol.Prcnct13 and I knew from the start she seemed like a flake and she was. I went in for my screening sometime in august was supposed to be on drugs by september...and then she fucked everything up mad I called and called and called finally my neurologist called and told me they fired Michelle Khol...so the research study had been put on hold frown

If you want to know about the study I'll explain it here:

SPOILERS! (Click to view)
the reaseach study I hope to participate in is to find out if the two types of MS drugs that are currently on the market will work even better together. The two drugs are Avonex an interferon and copaxone which is a synthetic amino acid. Why is this study so great? Everyone gets drugs: 50% get both Avonex and copaxone ,25% get avonex and placebo, and 25% get placebo and copaxone. The study is sponsred by NINDS. The drug companies are providing the medication, and other than that they have no hand in it. All my drugs are paid for, all my MRI's are paid for, all my doctor's visits, bloodwork, and anyother medical expense related to the study will be paid for. The study lasts 3 years. So for three years all this will be paid for it's an estimated $120,000 dollars of medical stuff I will get. And considering I'm losing my health insurance in July and the MS drugs currently cost about $1500 a month. The study looks really good.



Finally yesterday I went in for my second screening, if I pass it which I should I passed last time, I will go in for my MRI on Wednesday and then if that goes well I will be on drugs by June 13th I go in for shot training June 12th !!!!!!!!!!!!! I have been waiting so long for this...and I'm a nervous wreck hoping I pass the screening again *crosses fingers* I do have a back up plan if this falls through but it would be the best thing. So I'm sitting and waiting and hopeing everything is ok.

on a happier note I'm baking today which is fn, fun, fun! And I slept very well last night smile

one more thing if you know Michelle Khol and she still lives in CO you'd better to tell her to get the fuck out, because if I ever see her she'd better be ready to have hands wrapped around her neck and be strangled. I'm not kidding people this bitch will go down wink

VIEW 13 of 13 COMMENTS
plumfairy:
hey miss shark, poker at my place this saturday about7 or 8 until however late people want to stay (usually 2) see you there ?!! smile
smashedpumpkin:
see you tonight miss ramby!

i'm bringing a bunch of clay and my boy. biggrin

More Blogs