Looking through the Summer 2009 issue of Momentum, the NMSS magazine, I came across the page that dealt with the issue of brain tissue donation. I don't know how quickly one decides that they're cool with donating their own brain matter once they're dead and gone, but apparently I do so pretty quickly. According to said article, less than 1% of people living with MS "make arrangements for a posthumous donation of brain tissue." Those are some puny statistics. I immediately knew that this was something I wanted to do, so I earmarked the page, planning on coming back to it later. It was only after having my neuropsych appointment and thinking (borderline) obsessively about brains for a few days, that I remembered the article. 

Rocky Mountain MS Center was the first of three tissue banks listed on the page, so naturally it's the first one I looked into. After checking out all of them, I decided for a few different reason, that this was the tissue bank I would sign up with. One of the main reasons was the fact that the procedure could be done in my hometown, if you will. I know that another one of them bascically said the procedure would have to be done at their facilities, which just so happened to be in Chicago. Somehow I think this seems a bit unmanageable. Also, the Rocky Mountain MS Center was the tissue bank which was exclusive to tissue donation specifically for MS research.   

I suppose this seems like a bit of a morbid subject, maybe that's the reason that so few people have signed up. Who really wants to talk about death anyway? In thinking about being an organ or tissue donor, I suppose you have to actually ponder your own death, on one level or another. For some reason I don't really get all that far in this part of the thought process, it's just kind of a "meh" thing for me. I have been signed up as an organ donor for about eleven years now, and have only recently discovered that perhaps this is something I will have to change. I learned from one of the sites I visited that because there is a chance that MS may be caused by a virus, there are certain organs which are not recommended for donation. So rather than giving someone a kidney with possible side of MS after I kick the bucket, I have decided that donating some brain tissue for further research into MS would be a better option.

It goes without saying that for those of us less educated on the removal of brain tissue, it sounds kind of gorey. The procedure is actually quite simple, for the trained professionals of course, and frankly we aren't going to present for any of it, at least I don't believe so. There will be no visible damage done to your body, save whatever fate may have nabbed you post donation. So if you're checking yourself out from some distant planet, or perhaps as an annoying fly buzzing around the funeral home, and you happen to catch a glimpse of yourself post bucket kicking, there's a good chance you'll still be...pretty. 

You can check out the latest issue of Momentum for more info, or just dig around on the internet for that matter. I downloaded some forms from Rocky Mountain MS Center, went over them with my Mom and boyfriend, and have sent them in. You'll need to make sure you've made clear your wishes with your closest family members, since they will be responsible for making this happen, once you've made your final exit...not that any of us are going anywhere, anytime soon. 

So I went to my app yesterday. I'm officially a lab rat. Today I was supposed to take my first pill. I would love to have a post-a-thon about how I've in the hours since, but because I'm SO awesome, I've already forgotten to take it. I'm off to a booming start.

p.s. Yes I did notice that the date on the medication is expired.

Update: While I would have liked to have thought I was more cultured, its been brought to my attention that the date is in the European format. Gee who woulda thunk that us Americans don't know everything. Crazy.

Well today I go to my clinical trial doc to start drugs.  Why does this feel so damn anti-climactic for me? So much so that I even forgot to tell my Mom that I was accepted into the study.  I suppose this should feel like a big deal, but it just doesn't. Instead of one great leap for MS-kind, I just feel that its more like just a 40 minute car ride.

I have a problem with surprises, have my whole life. I was the kid who snooped for christmas presents, and constantly read my sisters diary. So the idea of being on  clinical trial and not know what I'm taking is more than annoying. It is more annoying that there isn't even a doctor I can manipulate into telling me. The fact that we're all running around blind is also annoying.

Pardon me for my excessive negativity. I'm just really jaded lately by doctors and the whole medical system. Much like everyone else, I wonder when things will actually start working for me. Perhaps when doctors will start listening, and be less concerned with getting your copay. I wish, just for once, the doctor who treated you, could experience what you do. Then perhaps things would be just a tad more urgent.

Well there has been a lot going on in life lately in general and with health. Though nothing I particularly feel like sharing (shocking, I know). So while I haven't felt moved to write about anything, I do want to leave you with this. My favorite quote, from a movie I didn't love by a character I didn't love. But I do think that this one works quite often for me. Especially with my life right now.

"You laugh. I'm not saying I don't cry but in between I laugh and I realize how silly it is to take anything too seriously. Plus, I look forward to a good cry. It feels pretty good. " -Garden State

This is how I look at MS. I cry, sometimes I cry too much. But when I'm not busy being a total D-bag, I laugh. I make jokes about this disease and hopefully I entertain you all a bit. Because it is true, you have to learn to laugh at things even when they make you want to cry. I hope that you can appreciate this as I attempt to follow my own advice.

So it's been forever since I did an update on anything from my little corner of the MS world. I finally have something worthy of writing about however, since yesterday I went in to have some neuropsychological testing done. I was oddly exited about going in for the tests, I guess partially because the brain is just so darn fascinating. Since learning that my brain may look a little more like swiss than cheddar, I definitely want to learn more about how it processes. 

My boyfriend went to the appointment with me, since I wasn't sure I'd want to drive home from Portland afterwards, considering my taxed brain may not enjoy the highways and byways. Also, he hasn't been to a Dr. appointment with me since I was seeing my first neurologist, and I think he secretly enjoys being a part of this process. I know I like having him there, simply because it helps make me feel a little more understood by him.  

So the first half hour of the appointment consisted of just conversation about changes that I have noticed not only in the last few years, but since my diagnosis. I went over with her the issues of short term memory, my inability to focus at times, as well as just feeling overall foggy. She asked a lot of questions about work and we talked a bit about my plans for getting back to school this fall. She was a bit concerned at my plan to do full time classes, as well as keep working (albeit very few hours) and suggested maybe doing part time classes. I'm definitely taking this suggestion into consideration, but stretching out my education any longer than I need to, isn't exactly thrilling. I am the queen of the impatience. She also offered a few suggestions for ways to make work a bit more bearable when I'm finding myself overwhelmed. We also talked a lot about stress, which isn't something any of us can just make disappear, but she wants me to work on ways to better deal. She has referred me to a certain psychologist who will help teach me some skills in this department, and I'm not opposed to that at all. It was interesting to hear my boyfriend pipe up and answer some questions regarding changes that he's noticed in me as well. I have to admit, it was definitely interesting to hear things from his perspective. He pointed out my increase in "word fishing" which is sort of hilarious, as well issues with my memory. He talked about how he'll tell me something, and I will swear up and down that he never told me. Dr. Sherman made a good point, that part of this is just selective hearing, which happens a lot in relationships, but the fact that it's happening so much may be part of my cognitive issues. One thing that was slightly disturbing was to hear was that he's noticed me begin to struggle with writing, which is something that came a lot easier for me in the past. He mentioned the blog, and how it could sometimes take me days to finish writing a short little post, but how in the past I could write a research paper in a day. I was a little embarrassed by this verbal, third party acknowledgement of my less than exemplary writing skills. I feel like it's a good metaphor for how I'm just sluggish at times, with everything. I feel like my processing time for just about everything, as well as my production time, has gone way down.