Thursday, May 3, 2007

RA bleh

I've been sidelined by my own disability issues lately. I'm struggling with the worst flare in my recent history -- I think since I've had rheumatoid. I had a horrible time at a respite weekend, where I could not push a wheelchair up a hill, made the girl walk instead (she IS mobile for short distances) and she had a seizure. This is the first time that my disability has interfered with my ability to help others. I mean, I've been tired before, skipped work, called in sick, needed help to get S.'s bottle of abilify open. (I've run down the street after his mom's car in the morning, waving the bottle). But I feel very deep down that I put her in danger, even though my boss has told me that I didn't. It's sobering. I've always believed that where ever I go in the world, there will caregiving jobs for me. I'm starting to realize that I may not be able to be a caregiver indefinitely.

There's a lot to think about lately -- I want to post some really exciting things happening on the tutoring front. Both Jessie, the teenager I tutor, and S., the teenager with severe autism for whom I am waiver staff, have had success at a few adaptive writing techniques I've stumbled on. I will post pictures and samples soon.

Meanwhile, I'm looking into switching to biologic agents, my neuro wants me on Zyrem, and I've checked out scooters in case I need one. I'm also confronting my stereotypes because I don't want to look disabled. Isn't that crazy? After all of this, I still want to keep my "us and them" distinction.

Anyway, I would like this for getting around inside places and campus, because it's great combo of a standing scooter, like a Segway, put with a place to rest my butt:
And this just because it's totally bad to the bone:

It's so good to have the Durable Medical Equipment covered on my insurance.

It's so good to have insurance. Let's hope I can keep working to keep it. I'm starting to enter sick world or disability world, where the energy to keep the obligations that come with being sick and/or disabled is equal to the energy needed to deal with the illness or disability. I have a neurologist, a rheumatologist, and personal trainer, a physical therapist. I have a zillon drugs to swallow or inject, some with food, some without, some in the mornings, some at night, some once a week. The paperwork and management of being sick can overshadow the sickness itself.

At one time, I ran/walked a marathon in support of the Arthritis Foundation.
Now I'm doing a 1 mile walk, and I think that at my current state, that might be an equal accomplishment.

I'm going to take my sore self to bed.
Tomorrow, once I get moving and take the prednisone I once begged my doctor not to put me on again, I will be bouncing around the house, full of energy, eating anything that moves. The crash seems to come about 7 pm. I love to hate prednisone, but it's saving my life right now. And killing my stomach. And mysteriously shrinking all my clothes. And making everyone around me totally unreasonable and hard to get along with.

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