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!!!
So I’m on a bit of a “wordiness hiatus” due to some serious “last week before infusion” fatigue. I’m in shit load of pain and so exhausted. I’m sure you all know all about it prob more than I do. Anyway, now that I’m stopping tysabri I’m not sure how this will work out for me. I will likely not be on any meds for at least a month or 2 while I get the gazillion tests required for Gylenia and wait for insurance to approve the medication. The fatigue is usually helped by the next infusion but now I’m wondering if maybe I’ll just have to deal? dunno. Fingers crossed and all that.
SO, I just thought I’d stop in and say hi and share this sculpture I’ve been working on (semi related to the project I’ve been working on but not directly… ) The piece is about 1/3 of the way to some sort of completion but its a big one and is Resin based so it smells to all hell.. have to do it outside when semi warm so as to not asphyxiate myself and/or my landlord & fam. Anyway, I’ll send some more pics as I just added a polishing layer to the top and am working on a mold for the second go (cause you’re so interested right? right. ) I’d share the main project but I’d like to wait till I have something semi complete to share. So this here is a side project, half head with personal MRI prints, cast in Polyester Resin. Its not whole and is cracked, but thats sorta the point.
so I guess this was pretty wordy though I said I was on a hiatus, so uh.. sorry I never shut up once I start :o
I just want to thank everyone for their advice, support, thoughts, and just reading this darn blog. I can’t tell you how helpful its been for me to write about this and touch base with so many of you that are (unfortunately) going through so much of the same crap.
So after reading and writing and posting I had my appointment today. It wasn’t so bad. I’m pretty exhausted and achey today so I won’t go on the rant about how amazing it is to have a great doctor that you respect and you feel respects you. Its only been a couple months but the differences is beyond words. Anyway, I decided that if I’m sticking to injections I’m going to stay on the copaxone since the others are generally intolerable to me (side effects wise) but that this will just be until I complete all the testing for the other medication options. I’m almost totally leaning towards Tysabri after reading, talking to everyone, and talking to my neuro today. That is, we both agree switching to tysabri is a great plan…. as long as I test negative for the JC virus (which having increases the risk of brain infection a TON statistically speaking ..hahha I like to make the former statistician in me twitch). Anyway, If I test positive for the virus (which is not unusual) I am not at a critical mass quite yet that its worth risking a brain infection. In that case I’ll be taking my chances with Gylenia. I had my blood drawn and we’ll find out 3 weeks from now.
In other news my usual neuro exam showed some dramatic weakness in my right side (arm especially) which oddly enough I didn’t list as a major new issue for me. Guess all the aches and shock pain and muscle cramping made that seem unimportant. So due to that weakness, and the increase in pain, I’m scheduled for another MRI in Mid November (had one in sept.) and my doc has put me on Baclofen for the muscle/joint/ pain. I’m still reading about it but it seems to be a muscle relaxant of sorts. Not thrilled about more meds but that really pales in comparison to the joy at potentially getting some relif from this pain and from having a doctor actually listen to me describe my symptoms and not look at me like I’m nuts, making it up, or whatever and actually trying to help!
So following all that I went to the RMV to get my placard only to realize after an hour of waiting (cause I’m slow) that I was supposed to mail it in. So they did that for me and I came home and collapsed on the couch. So now I’m gonna try to make that collapse some sort of sleep hah. Wanted to thank you all again. You rule! <3