Chronicles of Life with Multiple Sclerosis
Ugh. So I’ve been without internet for a week now (thanks for sucking RCN). In general I feel like my health has been declining but my attempts to fight the pain and fatigue have been increasing so I guess Its a wash.
Today I got lots of results from the crap load of tests I’m required to complete before I can start Gylenia. All but the dermatologist has been done so I figured I’d be taking the new meds by the end of the month. Well.. that was wishful thinking. Turns out that I never did get exposed to the chicken pox. I knew that about myself but most docs looked at me and sorta laughed and said “I’m sure you were exposed but you don’t remember” or “I’m sure you had a really mild case and didn’t know what it was”. Well they were all wrong so now I need to get vaccinated. Woohoo.
So the nurse at the clinic very softly (and in her kindest social worker voice) told me that its not just a simple vaccine, I’ll get it this week if I’m lucky then wait a month then get another shot then wait another month then they will decide when to start me on the meds. hah!
Yep, that pushes back my start date about 3 months while curascript kindly made sure I received my first month of meds this week.. apparently so I could pay them the copay and stare at the box. The doc says I should probably get a solu-medrol infusion since I feel like I’m on the verge of a flare up (pain and fatigue and cog - fog wise). But since im getting vaccinated I’ll have to wait till they figure out when I can get it so that it doesn’t interfere with the vaccine. Also there is the fact that I’ll likely get sick from the damn shots and I the person I hang out with the most is both immobile and has never had the chicken pox so I can’t expose her. blerg.
Point of all this? I feel like shit and I’m starting to wonder if the medication is even worth all this crap. /negativity
oh and P.S. I may not have internet but I’ve been meticulously typing this post out on my old ipad for the last 6 hours so that I can post it using a data plan I can’t afford to pay for. YAY!!!
and I stayed awake to watch Jimmy Fallon.. which I wanted to watch but.. I’ve been in SUCH pain all day.. that I think it was that half hour of relief that had me up and watching and tweeting.. but now.. i want to pass out and hope the duller ache stays that way so I get at least 5 hours of sleep tonight and wake up from rest not from serious pain. I won’t bet on that happening.