i'm so bad at journalling on here. my last entry posted was when my friend haley passed away. since then i lost two more friends, shea and laura. these diseases really suck. my own health has been in a decline as well. i stopped tolerating my j tube feeds and i've lost 70lbs. and though its nice to fit into smaller clothes (some of my things are actually mediums now!) after being mega chubby my whole life, it sucks that i'm wasting away. my doc started me on marinol, the marijuana pill, about two months ago, so i've been able to eat a bit orally, though not what/how much i need to be taking in, but it has slowed the loss and now i've been bouncing back and forth within the same 10lb margin.
lots of signs are pointing towards mitochondrial disease, so i've been referred out to someone at UPENN to investigate that further. i also got sent to a neurologist last week because i've developed tremors and my muscles give out on me a lot. i got a walker the other day which could have been depressing, but as it's sparkly pink and has a seat with a basket underneath and has made my life so much easier, i'm mostly feeling positive about it. and today (well, yesterday----friday.) i finally got my handicapped placard for my car---no more hiking a mile across parking lots!
i got a bump in my pain meds today too (he pushed my fentanyl from 37mcg/hour to 50mcg/hour) and for the first time i actually feel like the fentanyl is helping. the true test will be when i wake up in the morning, though--that's when my back pain is the worst despite having a fancy 3-inch memory foam mattress pad.
i'm also awaiting the arrival of my new over-the-bed table, because mine broke the other day. the handle, which was welded on, literally just fell off rendering the entire thing useless. (thanks for the quality control, walmart!) the one i ordered is bigger and nicer though, and i paid about the same as i paid for the one from walmart so i'm feeling pretty positive about that too. though until it gets here, im having to limit my computer time as i can't sit with it very comfortably at the moment.
i've been struggling with depression lately, but i've put my foot down about psych meds as i've had nothing but terrible experiences with them in the past. (and, if you know me IRL, you know that i've been on pretty much all of them at one point or another.) all i take is ativan for the aspergers/anxiety---3mg a day, and it keeps me at a pretty even keel anxiety-wise. i've mostly been trying to ignore the depression as much as possible. when i start feeling upset i put something on the tv or nap or whatever.
school's been going pretty well so far. i've dropped down to part time, so i've only got two classes this semester--philosophy in film (the first film we are dissecting is AI Artificial Intelligence, which i really like! and for our final paper we can pick any movie we want to write about!) and elementary algebra. so far i've kept up pretty well with the math, which is super impressive because i suck at math and have mild dyscalculia (number dyslexia). there's only one concept i don't understand so far, but my girlfriend promised to explain it to me. and she teaches elementary school so she's really good at explaining things.
anyway, that's my life at the moment. i hope this entry did a good job of catching up as well as sort of introducing my mess of a self to my new watchers. i'm a bit out of it as its 4:30am and i've taken my melatonin, so i'm off to get some sleep. unfortunately i can't sleep in as my aid is coming at 10am. sundays are the only day i can sleep in now--my aid comes tuesday thursday and saturday at 10, and i have class monday wednesday and friday at 10. i've got to start going to bed earlier or napping more!
anyway... good night! <3