CRPS, or Complex Regional Pain Syndrome (Type 1), is a change in the nervous system that's usually triggered by a very painful episode. The bad kinds affect the brain, nerves, muscles, skin, metabolism, circulation, and fight-or-flight response. Lucky me; that's what I've got. ... But life is still inherently good (or I don't know when to quit; either way) and, good or not, life still goes on.

Wednesday, July 25, 2012

The mighty steed (maybe)

As some of you know, I have it in mind to travel around the country, in a vehicle I can stand to use for more than an hour a day, and interview fellow CRPSers who know more than I do. If we pool our knowledge effectively, I'm absolutely certain that we can point the way to a cure, so this is by way of being the most important work of my life.

The output of these interviews is going to go under an umbrella project, a 501(c)(3) we're putting together, called "CRPS: Art & Spirit" – but that's another blog.

I've been car-less for a long time, which is tough in this country. After the usual research and footwork, I wound up buying a  Toyota Highlander, 2005, less than 80,000 miles on the odometer, a tad over budget. It looked good (and, with deep red coloring, is the perfect visual for this disease), it felt fantastic... But I noticed the engine hadn't been fully serviced. It's been in the shop for two days now. It's supposed to be ready.

What started in a sweet blaze of optimism is going sour as the time comes closer to put my signature on paper. (We closed the deal after hours.) I had to call for an update to find out the car was ready; now it turns out my insurance company is one they don't like the flavor of; and it turns out, with additional tone of voice, that I'm supposed to make an appointment to do the paperwork.

Excuse me? At a car dealership, I need to make an appointment for paperwork?

This does not bode well. I suspect distraction. I've already asked for a copy of the documentation on the work that was done.

... So here's the thing.

I'm a nice, middle-aged, former RN... with a devastating, incurable and painful disease... with (I'm happy to say) a growing readership... using this vehicle as a tool to work for the greater good.

And documenting the entire process.

Is this a person anybody would really want to deal badly with?

I'm pretty sure the answer is no. But we shall see how this goes. I'll keep you posted.


  1. Please post your news! I hope the deal goes through to your satisfaction because your project is so important.
    Will you come up to Sonoma County to meet some RSD patients close to home?
    Your anger/action post is great, too!
    Thanks for all your information and support,

  2. It went well after all, although it didn't go smoothly; the Motor Vehicle registry thought my social security number didn't match my name, but Massachusetts farms their i.d. process out to a company in California, so they had to wait until noon local time to give the CA office a chance to open, and spend 20 minutes on the phone clearing that up ... and then there was the smog certification thingy that didn't like the fact that the battery had been briefly disconnected ... it's ongoing, but nearly done.

    I plan to wend my way back to California (I'm in Massachusetts) and Sonoma is well worth visiting :) It would be cool to meet more people with RSD in person. I've only met us online. Yeah. Nice idea...


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