Saturday, May 12, 2007

To wear a blue hat

Today was the Little Rock Arthritis Walk. I was surprised at how small the event was, but it was a great event. I got my blue hat, the hat that people with arthritis or a related disease wear.

No one knows what I've gone through for the blue hat this year.

It seemed a small consolation for the job I love, for the frustration at respite when I couldn't do my job, for watching R.'s seizure, for learning how to stick a needle in my stomach, for spending the night on the floor of an Irish bathroom or a few hours on the more public floor of the Jonathan Swift's bathroom as we crossed the Irish Sea. (For those of you who don't know the story, I started experiencing extreme nausea and motion sickness from methotrexate while in Ireland).

Had things been a bit different, I would have been at a different walk, much bigger, wearing a different hat -- my mortar board. But this was good, in a sobering way for me. Despite my best efforts, I'm going to have this and it's going to bug me sometimes. I can't will it away. It's not a personal failure when it flares. It's not me letting the darkness take hold, as my ex-boss and (ex?) friend said.

When I did the marathon, it was with absolute triumph -- look! RA doesn't stop me! HAH! This walk was with resignation. I can do a mile. I can do three. But I don't want to do three right now.

It was a positive experience, though, and it left me feeling sort of strange. I walked with a 16 year old girl and her family. She too had a bout with invisible mono that never showed up on any tests. A methotrexate thing? She also jabs herself in the stomach. She also referred to herself as "lazy" and it shocked me because she seemed to be very confident. That I'm not sick and really just lazy (or as my boss decided, slipping into darkness) is my biggest fear.

I worked a golf tournament yesterday for UCP. My car has Autism Awareness and Angelman Awareness magnets. Why am I so adamant about advocating for other people, but I couldn't figure out what I needed enough to save my job?

It's time for me to care about rheumatoid as a way of caring about myself. It's time to do some advocacy work for Arthritis as well. I spoke to the people running the Arthritis Foundation about trying to get a branch opened here in Northwest Arkansas. I would LOVE that. I need a job with flexibility but one that will be bigger than me just making money. I need a cause is how my math teacher once put it. And I agree. I am trying to fight the urge to email my resume to the people I met.

But, before I need a cause, I need health insurance. And that means getting enough rest so I can work next week. Last week was an eye opener. Two hours of work a day plus and hour and one half of tutoring and I was beat. And I still have to take sick leave to keep my insurance.

It's time for me to admit that I can't work the way I used to. I can't take a time punching job. Yet I start one next week out of desperation. What happens if I drop a preschooler?

I have to start shopping for a desk job. Period.

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