and I never really introduced myself, so I figure I might as well.
I'm 23 years old, and I unfortunately still live with my parents. Mostly because I haven't been able to work. Slightly because I like not having to wake up before noon. I got pretty lucky, and live ~30 mins away from the Mayo complex in Rochester, MN.
I was diagnosed over Christmas Break in 2004 (my Junior year). When I got to Mayo, I had lost ~30 lbs in about
a month had severe anemia, and had violent Crohn's in my terminal ileum. I also developed skin tags and perianal fissuring and Crohn's. I started a Prednisone regimen, and weaned off as soon as my life was no longer in danger. For the fissuring, I started (and continue) applying Calmoseptine. I'm a little fuzzy on what I tried first for treatments, at the time I was still trying to wrap my head around the idea that I wasn't going to live forever (I still have my hopes!). I vaguely remember Imuran being mentioned, but I don't know if I was ever actually on it. I do remember starting 6-MP and Remicade fairly early on, and saw decent results from that, but over the next two years I built up a resistance to it, and I stopped taking it before it stopped working entirely (also stopped 6-MP due to new research and whatnot). Shortly afterwards, I started taking high doses of Azathioprine, which kept me in a near-remission state.
I graduated high school (barely), and tried my hand at college. I found that it agreed with me even less than High School did, and returned home after a single semester. I immediately sought work through a 3rd party job agency, and got a position at a local factory. Not fun or glorious, but it was good work and paid decent enough. The insurance, however, was crap, and I was no longer on my Dad's insurance, so I enrolled in a clinical trial for Humira. Over the next three months, my health once again deteriorated, and I lost my job (Because of my disease, but not legally actionable). I recieved a final, "emergency" infusion of Remicade, and then the dosing phase of the Humira trial finally started. Again, I saw decent results, but over the following two years, it slowly stopped working.
A few months after that I started a trial for ABT-874 (I think), which kept me alive, but didn't do much more than that. That lasted about
a year.
A few months after THAT I started a trial for Vedolizumab, or maybe Natalizumab. The one that hasn't caused brain fungus. I had to stop taking Azathioprine for this one, but by then my dose was so low it wasn't really helping anyway. That also lasted about
a year, didn't do much more than keep me alive. about
3 months after that (March 2011) I started a trial for some other nameless drug I never had time to memorize, but due to a minor oversight by one of my study coordinators, I had to be failed out just before dosing started. So after waiting another two months to get back in, due to the pharmaceutical company's idiocy, I was disallowed from re-entering the trial. Finally in May I started a trial for GSK 1605786A, which, in the last week or so, seems to have started working (knock on wood, I Hate White Rabbits, and all that other good-joojoo stuff).
Meanwhile, I've been spending my time playing video games, hanging out with friends, and trying not to poop myself in front of said friends. I recently applied for (and was denied) several forms of Social Security, and have begun the appeal process, but I'm not getting my hopes up. As part of the qualifications for SSI, I'm spending down some money I got from some stocks my Grandpa gave me, so today I spent several hours being fitted for a suit. I had quite a bit of fun, which surprised me. I particularly liked this blue/silver tie the salesman found. It looks sharp. I'll probably wear it to my Niece's wedding on the 25th.
She's 4 months older than me, and is marrying her High School sweetheart. He's a cool dude. He's going to school to be a pharmacist (Actually, I think he may be done with school now). I was gonna help him with one of his projects by giving him a list of my previous medications and immunizations, but I forgot. I still feel bad about
it. My niece just finished getting a degree in education, and teaches young kids at some school in Chicago.
Anyway, I'm glad she's got her life together. It gives me an excuse to wear my suit, and something to talk about
that doesn't make me sound like a nerd/geek/loser! Plus, I get to go visit my sister and her family, whom I haven't seen in ages. I'm not sure if my brother and his family will be there too, but I hope they are. It's been at least a decade since I've seen them. We're kinda spread out across the country.
So yeah! I'm pretty experienced when it comes to clinical trials, gaming, and barely avoiding pooping my pants. Sorry for the wall of text, kudos if you read the whole thing.
Post Edited (Bane) : 6/9/2011 6:10:24 PM (GMT-6)