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.

Thursday, April 19, 2012

Getting it right

H'mm... Struggling with the recurring message from the world around me that I can't do this, I can't cure this case of cold chronic CRPS. It's twinned with the message that, whatever I'm doing, it's wrong. I'm not interested in whining, because, as my CRPS cohorts know, this nonsense is par for the course... but every now and then, it's good to step back and do a reality check.

Let's take a good look at this thinking:

- On the conventional medicine side, I walked into a new doctor's office with my tabulated timeline of years of a complex case, pictures showing the evolution of the disease in this body, and documentation about what works and what doesn't. The response: "You spend way too much time thinking about this!"

Don't waste time trying to find any upside to that remark. It surprised me especially because most of my docs (the best in the biz) loved my documentation. Now I know that the really good doctors love it, and the ones who don't love it are either one-trick ponies or second-rate. This one was a one-trick pony, and once he'd done his job, I was gone.

Let's back up and pretend this guy asked, "Wow, that's a boatload of well-crafted, thoughtful documentation. Why did you go to so much apparent effort?"

I'd say, "I was a nurse so the concepts are easy, and I was a tech writer so the structure is even easier. This is a cakewalk for me. If I CAN'T document what's going on, check for a pulse!

"Moreover," I'd go on, assuming the doctor cared about my well-being, "tracking this stuff frees up my attention by letting me plonk it down in black & white and then put it out of my head. That leaves the rest of my time free for meditating, friends, bathing, housework, and so on.

"Besides," I'd add, if the doctor looked like one who could take a joke, "most docs find this case hopelessly confusing, and I don't need you wasting my time by asking the same questions 3 times and still getting it all wrong in the end, just like the one other doc who refused to look at this!" Ha ha.

Seriously, physicians, that's how to handle an expert patient: Ask, then listen. Saves time.

- The alt-health folks are liable to tell me, first, that I'm sick because I think the wrong thoughts; then, if they ask about my mental habits, it's obviously because I eat toxic foods; if they want to get straightened out about that, it's clear, dear, that you're too attached to this disease and there's nothing anyone can do to help.

My fellow CRPSers are thinking exactly the same things as me right now.

Besides the sheer cruelty of that response, the fact is that spontaneous remission from CC-CRPS (cold chronic CRPS) after the first 3 years is even rarer than spontaneous remission in cancer or AIDS. I've heard of it happening once as late as 7 years; I've had it for roughly 10; average survival is 30 years after onset. If any of you has more optimistic data, I'd love to see it!

Here are some things I've learned about how what you think and what you do REALLY affect the course of your CRPS:

- Those who stick exclusively with the conventional model and submit to their doctors without question, especially when they have noxious drug reactions (as I do), tend to suffer much and die young.
That's what happens when you're a passive patient with a disease that few doctors understand.

- Those who become well-informed and educate their doctors, have better results and do considerably better for much longer.
That's what happens when you open your eyes and take initiative regarding a very rare and complex disease.

- Those who research and implement changes to diet and lifestyle most vigorously, have the best results from their care and use a lot less medication with much better results, higher function, and lower disability.
That's what happens when you shoulder real responsibility for what you do and how it affects your life.

- Those who are active in the online communities, seeking support and providing support to others and sharing information, tend to beat the odds.
That's what happens when you constructively engage with your community.

(One day I'll have an open-source database that lets me pull up all the articles I've read over the years to support those statements.)

I'm looking for something I'm not doing yet. I will figure it out, hunt it down and I will do it.

CRPS is an incredibly hard disease, in every conceivable way. Where there is any spontaneous remission at all, there is something to work with. I just haven't figured out what yet.

I can't help thinking that Norman Cousins was an amateur! If he was looking for miracles ...

Since I still have CRPS, I find those recurring messages a little intimidating. I  don't yet have hard data to throw back against the key message. I can see that, when others say I'm doing things wrong, the statements tend to be presumptuous and ill-informed, but the fact is, I still haven't cured my own case of CRPS ...


Wednesday, April 18, 2012


I recently had a sequence of conversations that showed me where I really stand.

In one, I answered a series of health questions in a linear, rational, consensus-reality style: this did that, the other happened, and this twisted disease all makes sense to the crowd outside Wendy's.

In another, I discussed the comparative neurogenetics of mice and men like a hardcore science geek, all Cartesian assumptions and classical physics.

Then there was Firefly and Terry Pratchett, fine examples of satire that manage to be curiously strengthening rather than cutting anyone down.

Then a writer friend asked about the 2012 thing (maybe I should capitalize that: The 2012 Thing) and that led to a little discourse on Mayan numerics and calendar theory, galactic astronomy, and the quantum physics behind astrology.

For one thing, I've found that reality is a lot weirder than I was ever told. For another, I rather like being what I am: a translator. I can explain neonatal cardiology to a soccer mom, Hunab Ku to a lawyer, international politics to a meth head.

So where do I stand? It just dawned on me that I stand on understanding. (Look at that again, because I just did: stand...on...under...standing. I love it when patterns emerge, even if they're Moebius strips.) That stance often puts me between two extremes, bridging them with the clarity of the best words I can find at the time.

I don't need a creed of my own beyond "do no intentional harm", "we're all part of something larger (details vary)", and the like. This adogmatic flexibility is where my balance is. That's pretty cool. Not normal -- normal doesn't seem to work for me. But that's fine. This does.


Last year, I could tell exactly when the fallout from Japan got here, because my hands and arms swelled up the moment I stepped outside. I could tell which gloves had been left in the rain, because they made my fingertips go numb when I touched them.

Who needs Geiger counters when you've got cold chronic CRPS?

So I took off for the summer & went East until September, when the air and sunlight had calmed down quite a bit. However, the entire SF Bay is simply carpeted with wifi, radio, EM, and a whole lot of other stuff in the band that's so noxious to CRPS -- at least, in me ... And in almost everyone I know who has CRPS who has taken the time to reflect on what triggers swelling, autonomia and pain.

I had staggering improvements from a trip I got to a hot springs, where I did hot & cold plunges. In all my life, it was the most amazingly recuperative experience that didn't involve persuading someone else to work on me. That low emotional overhead has a certain appeal, in these dysregulated times. But I do look forward to finding lots of good company along the way.

I'm clearing the boat for sale then taking off on an extended tour of hot springs. I have no idea where it'll take me, but what a trip! I expect you'll read quite a lot about van camping, because remember, I'm on Disability and that doesn't leave much for hotels.