Wednesday, January 16, 2013

Ugh. Ugh.

I'm not as good at denial as my parents, although I'm still pretty good. Ignore it, maybe it'll go away... I dragged through the holidays, barely getting out of my pajamas. I slept in the basement so I wouldn't keep my sister up because I'd stopped sleeping though the night long ago.

I literally am uncomfortable in every single position. I can't sit, stand or lie down in any way that will alleviate my pain. That awful ice pick in the nape of my neck.

When my hair started to come out it seemed like a bad joke. Everytime I ran my hands through it, they came away coated in hair. When I washed it hair lined the bathtub and the shower door. There are two frank bald patches above each ear and I cringe everytime my fingers hit my scalp when I touch the back of my head.

It's like, what, the constipation, urinary retention, tachycardia, low blood pressure, nausea, vomiting and months-long headache weren't enough? My fucking hair had to fall out too! My thick, beautiful hair is so thin and brittle now. I didn't realize how much I loved it and took pride in it until I started losing it.

I would like to get some blood work done. For once I actually want to go to the doctor! But my PCP is booked for months and says if I'm really sick, I should go to the ER. My next rheumatologist appointment isn't for months and my GI and neuro terminated our relationship.

I want to use this post for something other than complaining, but when you've spent two weeks straight stuck in your house, your pajamas, your bed, you just want to let it all out.

Especially when your family is in denial. I'm fact, I think they've left Egypt and paddled right on up into Ethiopia in their zeal. I keep trying to get them to read articles but no. They won't drive me to doctors appointments. I'm very angry at them in a way I haven't been since I was banned from the eighth grade farewell dance. Or forced to stay home from a theme park for talking to strangers. I want to laugh, because if only I weren't so sick, I could drive myself wherever I needed to go.

But now I need a lot of help. Their help. And they're just not into it.


BubbleGirl said...

I think you should find a way to get to a doctor. It doesn't sound like you're doing so well, and if you can't get an appointment for months, the ER is the best place to get fast help.

Is there any way you could get a friend to drive you? Or a taxi, or public transit?

I really hope you start to feel better soon.

Yvette said...

I know, as much as I hate it, I have to go. In times of extreme distress I've actually walked before, though I don't know if I could pull it off as I am now. The flip side of being independent is not wanting any help, even when you need it! I'll probably end up contacting the head of our local support group if it comes to that.

Thanks for the well wishes. I'm kind of scared so I hope I strt to feel better too.