Friday, September 9, 2011

No seriously, I still can't believe it....

After more than 3 years of hell, I am finally back up to my healthy weight. I'm in no way healthy, but my weight it better, and that makes me feel better. I was holding my own around 120 (with a lot of empty calories, since that's pretty much all I can eat - plain white flours and sugars), but the birth control pills tipped the scale for me. I've been at 124 or higher (always some fluctuation) the entire week. I seriously can't believe it.

Of course, I've had absolutely no appetite all day, and even when I eat something yummy (knowing there will be consequences) just to make myself, eat, it still doesn't do anything. I haven't finished anything today. Fail. Hopefully tomorrow will go better. If nothing else, my baby nephew is gonna keep me busy, so maybe that'll get my appetite going again.

Friday, September 2, 2011

I have a disability.

Not something I say much. Or ever. There seems to be a lot weighing on the word "disabled" and I feel like that I'm not. Not the things that people think a disabled person should be. I don't feel like I'm disabled. But at the same time, I really do.

I don't remember what it's like to go through a day without pain. I don't remember a time before EDS and researching everything I could to figure out why this was happening to my body and what I could do to help myself. I don't remember a day that I didn't think about EDS, my body issues, my differences at least a million times a day.

Yet, I still have a hard time calling myself disabled or saying I have a disability. The fact is, by the very simplest definition of the word, I do have a disability.

I talked to my boss. She's knows a little bit more about my disease now and although she's never heard of it before, as a nurse, she understands just how extreme the words "connective tissue disease" can be. She's helping me to get my medical forms for work straightened out so that I don't end up penalized because I just can't get out of bed one day. Bless her for being so understanding and helpful. I only hope I can get up to the number of hours I need to get the proper medical leave form before I get sick again.

With any luck, my next rheumatology appointment will lend to more options about treatment. I really want to get into therapy and start getting the right splints/braces/supports/etc that would make my day more productive and slightly less painful.

But for today, I accept that I have a disability. Because I have to. Denying it won't change anything. And at least this way, my perception of myself changes for the better. Because I've never thought as a disability as a reason to be anything other than human. So this just makes me human, like the rest of the world.