Saturday, August 28, 2010

I would if it weren't for my legs

Earlier today I was on facebook (which can be a bit of a bummer sometimes, since it means glimpsing into other people's lives, and all the things they are able to do and enjoy, while I just sit most of the time). I came across a discussion on my news feed involving a bunch of friends of mine, people I used to hang out with regularly, and how they are planning to go out dancing tonight. At first I thought of how nice it would be to see them, and didn't I wish I could just swing by. But my body can no longer handle being squished in crowds. I would surely regret any attempt made at dancing for at least 2 or 3 days following, and would expect more pain, stiffness and fatigue than usual. Not to mention the headache would worsen. It is constant and getting worse all the time, depending on the weather, or rather the pressure in the atmosphere. I need to get my rest more than anything, or else these things become more and more intolerable.
This morning I cried while trying to hang a picture frame that had fallen off the wall, cause of the pain in my left shoulder when I lifted it, and the tingling in my fingers, and the curling, and tensing up; the strange way I am beginning to hold my arm so I don't further injure it, almost cradling it, "t-rex arm", I've been calling it.
Today a stranger told me I am lucky to be young. People are always telling me I look great. I wish looks corresponded with feelings. Dani is always saying it would be great if all the parts of me that are sore turned purple, so the doctors would actually be concerned.
Less horrible than the pain, but also scary to think about are the parts of me I just can't feel as well as I used to, the way my feet fall asleep while I am standing on them, how parts of my skin are always slightly numb. Particularly my legs, as it feels like I am always wearing knee high stockings. I find myself confused by this, wondering how the feeling in my legs can just start to disappear like this. I wonder if it's worth it to hope that it could ever return.

Wednesday, August 25, 2010

Chiari 1 Malformation

They found something interesting. They say I have a Chiari 1 Malformation. This means that part of my cerebellum is herniating into my spinal canal. They say this may not explain all of my symptoms. There is a surgery for it, but I do not qualify for it at this time. Meaning, my symptoms are atypical of Chiari and they don't know if the surgery would help. Furthermore, they like to wait till you lose a lot of your independence and functioning before they cut open your head. I can still walk for up to 3 blocks at once, and I'm still managing to hold down a part time job, so I guess I'm doing ok, comparatively.

I feel as though I have a long road ahead of me still.

I do have a lot of headaches, well one all the time that gets worse at times. Tylenol doesn't help. Coffee helps. They say caffeine opens your blood vessels or something.

Anyway, it's all very thought provoking, but for now I'm going to take a break from doctor's appointments. I wish I felt like I could think properly. I hate thinking about this stuff, but it's hard to get it out of my head when I'm constantly reminded by the nagging symptoms. Of what... I'm not exactly sure. I worry about the times when things go numb, or all pins and needles, or when my hand gets to trembly and cramped up after I play guitar for a few minutes.

I suppose I have to think of what I still cando. I'm not wasting away yet. Things can always level out at some point and stop getting worse. Or, get better even. That would be nice.

Speaking of nice. I made a mini-vacation out of my last out of town doctor visit. That's always a good idea.