Field Trip 09/28/2009
 So I got this flyer in the mail last week from the Providence Brain Institute, where I go to have all my brain needs met. There was a forum dealy thing happening not too far from where I live, and Dr. Stanley Cohan (my specialist) was the speaker. "What Every Patient Should Know About MS" was the title, so I figured what the hell. I registered to attend one of these quite a while back, and didn't end up going, so I figured I might try to make this one. For some reason I felt like it was something I should do, at least once. My biggest concern about going to this thing (yep, I like to make mountains out of molehills) was the fact that I figured there would probably not be a many younger people there. Well, that was an understatement. There was like, none. I got there and peaked in the doorway to about ten round tables, filled with older people. And we wonder why there is this idea out there that MS isn't a disease of teenagers and twenty or even thirty somethings? Jesus, it's because we don't show up to anything! Us younger folk need something a little more enticing than a "free lunch" to get our asses out the door. Anyhow I walked in and immediately felt like some sort of a leper, haaahahaha. I'm supposed to be in a room full of people who have the same shitty ass disease that I do, my comrades, but no, I felt completely out of place. I'm sure much of the confusion I saw in the faces of my fellow MSers was in my own head, but I'd say there was definitely some there. Adventures in prescription pain pills 09/25/2009
 Well it was bound to happen. I think for the first time ever, I have officially taken too many pain pills at once. No seriously. I'm pretty sure I'm tweekin'. This is a horrible feeling. I just keep staring off into nothing, my balance is off, my brain is all over the place, and I can't keep my eyes open. What I wouldn't give for a fucking nap right now. So my stomach pains yesterday were over-fucking-whelming so when I got home, I took a vicodin around 5 and it worked great, I felt better than I had the whole damn day. I laid on my couch watched TV and didn't want to die. I actually even fell asleep at a normal hour. Then it all went to shit. I woke up at 1:30 with excruciating joint pain. I'm not sure why this happens to me, but it did the last time after I got out of the hospital. Its like my knees and ankles just throb and I can't move them or stand on them or do anything without them just killing me. Its awful. Its so bad that it brings me to tears and for some reason only happens at night and when it wakes me up there is no going back to sleep. So in order to save my sanity, I took another vicodin. In the past they haven't really worked for this pain but I was desperate, and it had been about 6 hours which I'm pretty sure is when its ok to take another. So I sit on the couch in awful pain just waiting it out because I know that I can't even attempt to sleep. Around 3:30 it starts to finally go away. I can sleep again. Here is where I fucked up. I woke up again at around 4:30. The pain...it was back in full force. And my Guess who's back....in the hospital....again 09/22/2009
 Well big shocker. Since last Wednesday I have been camping out here again at the hospital...good news is that its not MS related, nor heart problems. Wahoo. However before we all start rejoicing with the peasants, lets take a step back and talk about how shitty it is that I'm here because its due to the colitis. Which as we all know, is seriously one of my favorite things to talk about. Remind me again, how much I hate my life. So I'm here. Have been here. Hate being here, however am becoming a regular here. Nurses know me, people go out of their way to visit me. We're regular old friends around here. Its like cheers except minus the liquor, fun, and Kirstie Alley. So I'm gonna talk about the colitis for a bit, just because I think the education aspect of it is important. I do apologize that because of my medical disasters this blog has branched out a bit from MS, but hey since my MS is in remission right now, its clearly more fun to talk about as my disease ridden asshole. welcome to boring city 09/16/2009
 Hello peoples I am Dana, friend of Jackie, and collaborator on this blog. I have truly flaked out on writing, and I'm sure I could list off a bunch of excuses, but i'll go ahead and spare anyone who is actually reading this. In order to get myself back in the groove of contributing here, I am just going to sort of update/ramble. Here goes nothing... So I spent an interesting summer house hunting, and my boyfriend and I are now finally in our new home. I can definitely say the energy that it took to find/buy/move into/begin minor renovations has truly been...grueling. On the same note it's been totally rewarding and all that cliche-buying your first home-bullshit. I have a really awesome neighbor who is nearing eighty, living alone, and certified schizophrenic. She has decided that I am her new best friend, so I've taken to sticking post it notes on my front door which read "do not disturb" when I truly cannot deal with crazy babble coming from an elderly lady in her granny panties (no, i'm totally serious). Sometimes this actually works, although posting notes on my door makes me feel a little crazy as well. Even though crazy old neighbor lady is totally endearing sometimes, I remain slightly leery given her fragile mental state. Speaking of fragile mental states, I could probably touch on my own, but I'll save that for another post. So I have also just begun school again, as was the plan pre-diagnosis. While I won't say that MS has totally overhauled my plans, I have made a change in my major as well as decided to completely finish my degree online. Both my doctor and my neuropsychologist had suggested that I take school quite slow, and against my better (yes, better) judgement, I am only taking eight credits this term. I have already found myself wishing for a bit more to do, so needless to say, lesson learned. At the same time, there is that little issue of not quite knowing what one day to the next will bring, and tomorrow I might be thanking my lucky stars for so few classes. The unexpected twists and turns in how I am feeling has been by far the most irritating part of this disease for me. I am still working a humble three days a week at the coffee shop, which is the least I have worked in my seven (yes, seven) years there. When I space out on whether I have charged someone, or work to get some flipping straws through lid (who even drinks coffee with straws?) I just make a big fat joke about how I'm getting too old for this job or I've had too much caffeine. Laughter is the best medicine, although some people have shit for a sense of humor. To those people, I smile and make a secret wish that they spill coffee on their crotch. Are We Disabled? 09/08/2009
 So I have struggled with this question often, mostly when its simply put on a form or something. Disabled...check yes or no. If only it were that easy. I have this inner battle whenever I see this question put so nonchalantly on a piece of paper or a radio box online. I want more than a yes or no. I want lines. I want a "maybe" option. I want a "sometimes" option. I want a "depends on what day and what freaking time you're talking to me" option. I feel like maybe this is a really easy question for some people, but for me, and Dana and others its really effing hard to make it so cut and dry. Perhaps they are specifically asking are you "legally" disabled, but if that was the case wouldn't it specify the "legal" part? Is disability reserved for those who carry handicapped parking permits? I suppose this just really comes down to what is disability? According to good old Wikipedia (which is totally trustworthy) Disability is defined by the Americans with Disabilities Act of 1990 as "a physical or mental impairment that substantially limits one or more major life activities. Well shit...who the fuck isn't disabled at sometime. Is disability in the mind of the beholder? There should be a scale of disability on forms like this. Either you check "no" or you get to rate your disability. I don't know. I just feel like, I never know what to say for those things. I also feel like its a catch 22 to answer it sometimes. I often find myself assessing to pros or cons to whatever answer I decide to give and whether or not that could be beneficial to me. At this point in my disease progression, I suppose I would say that I am not disabled. But am I more disabled than the other 24 yr olds I know...most definitely. However what does my disability look like? Its not in a wheel chair, its not on oxygen, and it damn sure isn't bed ridden. But instead its the stereotypical MS symptoms...the invisible disability. Numbness, tingling, fatigue, and the constant mental battles that involve toting around multiple auto-immune diseases (and now a fantastic mystery that caused my heart problems). What is disability to you? How do you answer these questions? |
