Sunday, January 31, 2010

little-big disabling things

  1. I MISS being able to leave my room easilty. Why does so much of the world have to be lit by florescent lights? Why do I end up in disabling pain just from sitting for an hour with my friends eating dinner under florescent lights?
  2. I wish I didn't have to plan my wardrobe based on my pain level of the day.
  3. Similarly, it would be nice if I could put my hair up without that hurting.
  4. Chairs! Wouldn't it be nice if the chairs didn't hurt my back and make my pain levels worse?
It's funny how all these little things, that so many people never think about, can be so important. Can basically trap me in my room--and even hurt me in my room. Sometimes I flip off the florescent lights-curse them out with my hands and voice.

But how do you build a university and a world with my accessibility needs in mind? Would it even be fair of me to ask that?

Birth Control

Next up on my list of treatments is birth control. I may start next week. I really hope it works, but it seems unlikely. After all, I've tried over 20 medications.

But I'm scared: part of me is hopeful that this might help and that hope could be a problem. The more hope I have, the more it will hurt when the treatment doesn't work. And despite how many things I try--pills, injections and alternative treatments--it always hurts when it fails. I try to be as pessimistic as possible about the possibilities so that it will hurt less. (Sometimes people who don't have similar health problems try to convince me this is the wrong way to go about it. But I'd rather fall from a low height, of low expectations, than a high one.) I've fallen over 20 times and it still hurts every time. I think I cry every time.

So here's a hope it helps. And here's a reminder that it probably won't and that I have friends, online and in meatworld, who will be there to help when it falls apart again. And here's to hope. To still having hope. And to the strength it takes to still have hope and to keep trying treatements instead of saying "sod it."

Wednesday, January 27, 2010

I'm back

I haven't had internet access or been home for a couple weeks, but I'm back and ready to try to find more positivity and deal with more health decisions. Yay....?