Wrist Issues

I am writing this with a dictation software. My wrists are in agony and some of my fingers are as well. I spoke to the Dean for students with disabilities yesterday, and had a discussion about deadlines, papers, and my disability. We figured out that I am in a flareup, and that that is why I have not been completing my work. I have been subconsciously avoiding writing a paper that I think I will enjoy because my wrists hurt.

I have since had two professors suggests my dictation software. But I am not used to using it, and it is really hard to write papers through dictation rather than with my hands. I need to get used to the software, but I do not know how, much less how to do it quickly in order to get a paper written.

I think I am also fighting the idea that I need to use it and have been since I bought it two years ago. This is another part of getting used to being disabled instead of temporarily able-bodied. It is a struggle to remember that there are things I can't do, that there are things I shouldn't do, and that it's not my fault. I am having a negative emotional reaction, such that it is hard to speak this without crying. I think I've adjusted to mobility issues, and to asking for help when I can't walk or at least shouldn't be walking far, but it is a lot harder to recognize and to admit that I can't do schoolwork at times because I am in too much pain to do so. I have not fully made peace with what my disability does to me, and having multiple suggestions to do exactly what I'm doing right now somehow makes it worse.

I don't know how to make this better. I know how to take care my wrists, and I know how to take care of my hip and my knee, so that with time they will heal. It's the emotional stuff that I can't–but I don't know how to handle. There are a lot of “should” and “should not” statements in my head. Things like, “I should have written this weeks ago,” or “I should be able to get this done now,” or “I should not ask for two extensions from the same professor on the same paper,” and all of this based on a conception formed a in high school while I was still able bodied. I feel like I'm annoying my professor by asking for the accommodations that are my right.

In short, I am struggling with my limitations, and I think with internalized able-ism. I am not sure how to move forward from here.

Minor Flare-up

I suspect I've started a flare-up recently. My wrists and hands are achy off and on (particularly just before a dose of one of my meds), my mouth keeps getting either dry or extremely thick mucous, so that I have to keep rinsing my mouth with water periodically (particularly when I'm singing!).

Of course, I've also been spending a lot of time on my computer doing things like scrolling through long readings when it would be better to print it out, except that printing costs money, or paper and ink. Today I printed all of my readings in a computer lab that does double-sided printing.

And so it goes.

At least my meds are handling it enough that my work hasn't been impacted too much this time.

Quick Update

If you read either of the last two entries, you know that I did a lot of driving last week to get myself and my brother to my mom's house for Thanksgiving (US). I did have time to sufficiently recover before driving back to school yesterday.

But yesterday's drive set me back again. I was doing pretty well; I didn't need more than one stop to stretch, at which point I also refilled my tank. (Seriously, I've spent >$65 on gas in the last week, first to fill, then to get back to full after driving extra and then letting someone borrow my car. *sigh* I technically could have waited to refill my tank, but didn't anticipate prices being any better a week before Christmas than they are now. And I could have bought a new pair of shoes with that money.) The bad part of the driving came when I hit Hartford and there was stop-and-go traffic for I think more than a mile to get onto I-91, and then I-91 was backed up for another mile, so I spent at least half an hour longer on the road than usual, and all of that was for a kind of driving that really messes up my hip and knee. On a Sunday afternoon, which I thought would mean light traffic, but Thanksgiving, go figure. I actually resorted to two-footed driving for the stop-and-go, or my right leg would be a LOT worse today. As it is, I took the medical van once to get to the other end of campus for class.

Anywho, my leg isn't in agony today, which is a miracle in itself, but it also isn't working as well as it does when I haven't been driving a lot. It'll get better. I'll just nurse it for a few days. And no one here gets mad at me when I can't do stuff!

OTOH, my wrists are in a flare-up. Basically the symptom I have is that things feel "tight" as opposed to extremely painful all the time. I need to find effective massage techniques or exercises for those kinds of pains. It's not bad enough to impede my typing, but I kept massaging my right wrist while taking notes in class today. I think I ended up with four or five handwritten pages--no wonder it hurt! And this is starting the last three or so weeks of class and finals, which means, lots of papers to finish the semester. But it's almost over!

Out for the count

Yesterday was a better day in terms of pain levels than I've had in a while. I think it was a result of my physical therapist putting me on electrical stimulation and a heating pad for twenty minutes. For the rest of the day I managed pretty well, aside from some ongoing emotional problems resulting mostly from being in pain all the time and not getting things accomplished (see my last post). It wasn't until after dinner that I was noticing enough discomfort to take the medical van or the Ride.* I didn't. I walked home. I even managed to get a solid night's sleep without being awoken or kept awake due to pain or discomfort.


*The medical van is available in the daytime for students with disabilities or injuries like a broken leg who have permission from the health center. The Ride is a nighttime shuttle service available to all students.


Today I started getting mild pain as I did my morning routine, and then went to my Hebrew class. I think that was what started the problems. I have a heavy textbook for Hebrew, which we work from in class, which means I have to carry it with me. The class is a ~7 minute walk from my house. From the class to lunch is probably 3 minutes. Then 5-6 minutes back to my dorm. I was somewhat okay sitting through class. Lunch was terrible and I finished as fast as I could. Went back to my dorm, started crying.

Pain is extremely difficult for me to deal with. I hate it, I fear it, I can't think around it. I ended up not going to my voice lesson in favor of meeting with one of the doctors at the health center about pain management. I start a low dose of amitriptylene tomorrow. In the meantime, the doc said to take Tylenol regularly for a while to see if it will get me over the hump because that sometimes works better than taking it occasionally. I asked for and received a couple of handfuls of single-dose packets of acetaminophen (my Tylenol bottle is probably going to run out soon...).

I also emailed a couple professors, the Dean for Students with Disabilities and my Class Dean to work out how to hopefully set me on a better track. I'm going to set up a weekly meeting with one of the deans (I haven't quite decided which, but I'm thinking probably my Class Dean) in order to strategize and deal with new things as they come up. I expressed the need to have someone working with me because I can't self-advocate easily when I'm already having trouble keeping up with things, and cry every time I explain things to a new person, to boot.

I'll be doing something about my textbook, although I haven't decided what yet. I've had suggestions to photocopy, get a rolling bag, cut the binding from the textbook and just bring in the pages I need from that, or share with a classmate. I don't think I'll be cutting the binding. I'm horrified by the suggestions, and honestly am not sure how to do such a thing without having to do a lot of hard work. Most likely I'll end up photocopying, even though it's wasteful and will make me run out of ink pretty fast (or coins, if I decide to use the library copy machine).

These are some of the things I'm doing to deal with the pain, but I hate that I have to work so much harder than my friends to do simple things, I hate that I keep spending my weekends doing bedrest, because even though I don't party, I still usually do something on weekends, even if it's just go visit a friend somewhere else (often it's board games).

Right now I'm laying in my bed with my laptop on top of the covers and wishing that I could make my wrist pain go away, too. I'm sleepy partly from crying earlier and partly because I took vicodin to get some relief. I think I'm pretty coherent and able to think, which is not my past experience with it (I once took vicodin and then tried to tutor someone; I would not recommend this). I suspect that the fact that I can still feel what's going on with my knee has something to do with why I'm more clear-headed; the pain is bad enough that the dose I have isn't quite as strong as I need, so it's not affecting my cognitive function. Though I'm not a medical official, so I don't know if that's actually something that happens.

My physical therapist says that this kind of pain shouldn't result from Sjogren's syndrome. Maybe she's right. Maybe my unofficial diagnosis isn't correct. I certainly don't have that many problems with things like dry mouth, which is a common symptom (I have plenty of saliva, etc, although dry eyes are slightly more of a problem). However, I reject the notion that this is my fault from doing something wrong; as far as I can tell, I haven't done anything different except that I'm not in a dance class this semester, and the summer ended so I've started school again. Granted, I'd love agency and to be able to pinpoint something I could change to make this all go away, but...I have a hard time right now with being told X thing you're not doing is wrong and there's no excuse for not doing it. I feel like I'm failing on so many levels and it's hard to combat that feeling. Being told that by two different people within two days (even if they didn't mean it that way), especially two authority figures, is just making things worse.

What I need is to get back on track and not struggle every day to keep up with my studies. What I want is to not be in pain.

I can only take things one little bit at a time, but at least that gets something done when I have a very limited number of spoons to work with.