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.

Monday, January 28, 2013

Pushing back on neuroplasticity

I got the Sydney norovirus right before it hit the news. I'm recovering, but slowly; the persistent low-grade nausea is annoying -- and worrisome. I don't want my body to get the idea that this is the new normal...

Brain plasticity is a major culprit in CRPS and its maintenance --
  • from the first refusal to cut pain signals off...
  • to the growth of the brain cortex area that monitors that body part, so it can handle more pain signals and provide less space for normal body areas...
  • to the deeper remapping and rewiring that alters cognition, disrupts memory formation, screws up autonomic signalling, knocks endocrine and digestive function out of whack...
  • and so forth.

It's important to stay on top of the brain, so to speak.
Thanks to the brilliant pioneering work of Dr. V. S. Ramachandran, we now know that mirror therapy and reducing-lens therapy can remap the brain's perception of injured body parts to something closer to normal. That was a huge help with the pain, when I had CRPS in limited areas.
The reality-shattering concept behind mirror therapy is, basically, that conditioning can work in reverse: rather than allowing ourselves to be the passive objects of what our brain becomes accustomed to doing, we can push back against the brain's alterations using our natural mechanisms of perception and intent. (The basis of Dr. Ramachandran's discovery is that perception alone can provide the altering input. Intent gives it more focus, force and direction.)
The relationship between body, intention, and brain is interactive, multi-dimensional, and interdependent. 
Having said that, it's not completely reciprocal, nor is it ever under perfect control -- unlike a good trapeze act.
If we could will ourselves better, then, given the extraordinary focus and determination of my fellow CRPSers, I know for a fact that we would have done so already. I never had met anyone with as much determination as me, until I met my core group of CRPS friends. If will alone were the answer, we'd have it!
CPRS is complex indeed.
Anyway... back to what we CAN do.
Communicating with the brain, in language it can't ignore
The basic principle of RE-re-mapping the brain is this: describing to the brain, in language it can't ignore (combining sensory perception and intent), what it should be doing.
In my Epsom bath article, I described rubbing a washcloth over body parts that have distorted perceptions and telling them silently, over and over again, "It's just a washcloth. Feel just a washcloth."
Where there is normal perception, or even nearly-normal perception, I stroke from the normal area to the abnormal area -- never, ever in reverse! the brain understands the concept of "spread" -- and tell my brain and body, with absolute focus, "This is what normal feels like. Feel normal HERE now. This is normal. Feel it here now. That is the correct feeling. It's just a washcloth. Feel a washcloth."
Not a burning sheet of sandpaper twice the size of my leg. Not a blunt sense of almost nothing, somewhere else.
A washcloth, right here.
When I'm doing this, I don't even think about what the abnormal feelings are like; I came up with those metaphors just now, sifting through my memory. I shut the incorrect perceptions out of my mind and dismiss them, over and over, as obviously false information.
I have to take a break sometimes when the pain is bad and just breathe, but I don't think about it, I focus on the point: learning to perceive what's really there.
Vision, tactile input, kinesthesia (meaning that, as my hand and arm moves over the body part, my brain's mechanisms triangulate on where things really are and its picture of my body gets corrected), and the focus of intent, are all part of the exercise.
This combination of factors is what makes it so effective. The multisensory inputs, the constant messaging of proper information, eventually overrides the false information.
Slowly at first, but with increasing pace, the normal sensation spreads over into the abnormal area. Every time. Not always completely or perfectly, but often both.
So far, I've reclaimed normal sensation in my back and most of my left leg, and I've kept the sensation and function in my arms at a level almost incompatible with the decade that I've had this disease.
Considering how bad things have gotten when I let this slide, the value of this exercise is clear to me.
Pruning your neurons intelligently
Learned responses are due to the basic learning mechanism in the brain:
  1. neurons hook up, and a connection (or association) is made;
  2. if the connection gets used (or the association is allowed to stand), more neurons hook up to make it stronger;
  3. once enough neurons have hooked up, the connection becomes like a good road;
  4. and the thing about good roads is, they get used, even if they're used for something odd.
It's important to manage the roads in your brain, especially when you have a neuro-plasticity disease like CRPS:
  • Make sure the roads in your brain are useful to you.
  • Do that by pruning the connections you don't want.
  • Prune those connections by letting the associations die.
  • Let a connection die by deciding to think about, or do, something else, whenever it comes up.
    Consistently. Persistently. Relentlessly.
  • And keep making that decision every time it comes up.
It works by a negative, which is not how we are taught to do things: turn away from the response, shut out the perception, ignore the link. That's how you prune an unhealthy connection.

It takes time, but it works. The time will pass anyway, so your brain might as well be better off at the end of it...

Masters of distraction
We CRPSers are masters of distraction -- not to mention the kind of persistence that this pruning takes. We can learn to be diligent about applying it to sensory associations we don't want. This is where ADD, used selectively, becomes truly -- oh look! Yellow feet!
... Wait, what was the connection I was about to make? I've forgotten.
See? It works!
The joy of having a bit of ADD and being a meditator is, you really can choose when and how to let out the ADD -- as long as you do it often enough. It's a great tool, and I'm grateful for it.
Pruning specific sensory and functional associations
I've had recurring nausea for months now. It's related to upticks in stress, of which I've had more than an elegant sufficiency in the past year.
Then there was this tummy bug...
It's day 5 and I haven't vomited in 3 days but I'm still nauseous. While this bug is supposed to leave one nauseous for quite some time afterwards, I really don't want my brain getting the idea that sending nausea signals is going to be the new normal. I'm not going to let the nausea become habitual. So I'm pruning those connections.
I can't will nausea away, as it comes from quite deep in the brain from a primitive place. And, unlike pain, distraction doesn't help much for long.
So I'm balancing the use of ginger (short acting, "hot i' the mouth", sugary) and anti-nausea meds (long-acting, makes me slower in brain and gut) to shut down the nausea for a good part of each day. 
This means I'm not nauseous for a good part of the time. This helps retrain my brain away from constant nausea by letting the relentless association, and the neurons that make it, die off. I'm going to keep after it over the expected week of recovery still to come.
Only constructive connections, please.
That's one example. It doesn't take much thought or mental discipline, just persistence.
My lovely friend X has a recent example of something different, an obviously inappropriate new association being made.
She multitasks, making full use of her functional time. When she was eating, then turned aside to the plastic phone or plastic computer to respond to someone, then turned back, her food suddenly tasted and smelled like plastic.
That is a very errant association indeed. Prune it!
She is now putting aside the laptop and turning off the phone while she eats, so the association doesn't develop further. Moreover -- and she may have just enough ADD to pull this off -- she hopes to be able to switch her attention immediately when the plastic taste pops back into her -- Look! Yellow feet!
Egrets make great distraction, especially in funny socks.
It takes time to let those connecting neurons die, but if you get on it quickly, as X did, it can turn around pretty well and pretty quickly.
The Principle of Primal Exclusivity
This is simpler than it sounds. It's the opposite of pruning.  
When you're doing something really basic (or primal), like eating or drinking or sleeping or running or sex, keep your attention basically on that activity. It helps keep your brain straightened out about those things.
You really don't want them getting bollixed up, because rewiring primal functions takes more work to undo.
That's one reason why insomniac advice is about having a calming bedtime routine and sticking to it: it's retraining the brain around a primal activity. The brain needs absolutely consistent signals over a period of time, to retrain successfully.
Incidentally, sex (alone or together) is the only activity that (ideally) engages both sides of the autonomic nervous system: arousal is mediated by the sympathetic nervous system, and orgasm by the parasympathetic nervous system. It provides a balancing mechanism I can't think of occurring in any other sphere of life. Done properly, it could be the perfect autonomic tuning tool...
And with that happy thought, I'll leave you to wash your hands against this norovirus and do whatever seems best.

Wednesday, January 23, 2013

In a house of flu

My darling host V got this year's brutal tummy flu two nights ago. His daughter, L, and I jumped right on it. A couple gallons of mixed fluids and someTamiflu later, he's looking better than ever, and is quietly enjoying the privilege of lying around in his jammies and having two women dancing affectionate attendance on him.

Yesterday, I got a little more white grape juice and pedialyte than I thought he'd need, just in case we needed to jump-start someone ele's treatment. Looks like it was just about enough, though.

Over last night, L and I hammered 3 doses each of oscillococcinum, which we usually find very effective in warding off the flu. I'm used to respiratory flus. We shall see.

Today, L wiped all the knobs and surfaces with alcohol and washed all the towels and linens in hot water. Growing up, she had two rounds of rheumatic fever and her mother had adult polio, and the entire family got chicken pox at the same time; she knows what to do "when there's sickness in the house," to use her timeless phrase.

I stood back and made encouraging noises, and wished -- for the very first time, every time -- that I was able to be just a bit more use.

With the autonomic nausea I've been fighting off and on for weeks now, it's hard to say if I'm actually getting flu-y or if the autonomia is kicking up. As I finished picking up the kitchen, though, my insides let me know that they are considering the value of reverse gear. Nothing substantial, just a warning...
That's the autonomic transmission, on the right...
Intestinal flu wreaks havoc on the autonomic system:
  • Turns the GI system inside out, which boosts inflammation, disturbs blood sugar, and wastes fluids;
  • Whacks out the electrolytes, which alters nerve transmission and pretty much every other cellular process, generally spiking a pain flare and roasting the higher cognitive functions;
  • Dries out the body, which puts what's left of the fluid-dependent brain and CNS in the toilet -- along with everything you've eaten for the last day.

A healthy body has metabolic margins to absorb this with considerably more grace. It's still bad, mind you -- really rotten, in fact. Pre-injury, tummy flus always made me wish I was dead.

In a body with dysautonomia and CRPS, it's a ghastly festival of burning, of mindless agony, and a sheer dreadfulness to existence that words can't touch.

So I'm considering a quick Epsom salt bath to preload my system with that lovely electrolyte, I'm getting up a blog post with these wonderfully dinner-appropriate details (hah!), and hoping that L -- who, as she has often said, did have her flu shot this year -- will be well enough tomorrow to run to the store for more pedialyte and white grape juice.

Everything comes to an end, even the flu. The awareness that there is always an "afterwards" is always with me now. It's a good thing to keep in mind, because the reflex is to get lost in the now, when it's overwhelming. But there is always an afterwards.

I'm not worried, I'm not anticipating, I'm not buying into the nerves. My mind always runs contingency plans, but that's natural for me. (If I can't come up with a plan B and a plan C, check for a pulse.)

So it's time to catch up on a few things, push extra fluids, coach my body into the tub and back out again, and take things as they come. The low energy just means I have more time to watch DVDs; the wonky tum just means I don't have to think as often about what to eat.

But seriously... take every opportunity to be happy; it makes you stronger. :-)

Wednesday, January 16, 2013

The point of mythology -- and there is one

NOTE: Blogger has taken to putting ads in random links within my text. To clarify which links are relevant and intentional, the links I write are now in italics. (Not pretty, but it works.)

I'm working on a series of 3 novellas, a triptych:

1. Kronos in season: The growing-up of a primal god.
2. Hell -- the bright side: The original story of Persephone, the original career woman.
3. Pain, a comedy: the intimate family drama that came down to us as the story of Chiron, the wounded healer -- and possibly the first recorded case of CRPS.
(Warning: slapstick and hangman's humor, sometimes simultaneously.)

I've been bogged down on number 2 for the best part of a year. In other words, I've been stuck in Hell... heheh.
"That Heironymous Bosch. What a weirdo." - Good Omens
When asked what I write, I usually talk about CRPS and turning medical science into plain English. When asked what my favorite thing to write about is, I have to say, it's mythology.

"Wait -- mythology? ... Why??"

Because myths are about the greater parts in ourselves. Those of us in unbearable situations (like the Newtown teachers or Mother Theresa or, indeed, anyone with a terrible illness) have to be superhuman at times. Sometimes most of the time.

Myths remind us of our innate capacity to reach beyond our limits and own the moment, hideousness and all, so that we can lift ourselves beyond all reason and find a way to make things better.

We have modern myths, like James Bond, Star Trek, the X-Men and Harry Potter.  While they have their limits as myths, they still meet the inward need to see that part of ourselves that can bear the unbearable, survive the murderous, and emerge victorious from a no-win situation.

I should have died at least 5 times in the past 10 years. But here I am, very much against the odds, still thinking (sort of) and writing. Rediscovering mythology played a part in that.

And, more than ever, I find it incredibly easy to tell those enormous stories as if I were talking about real people in real time -- because, in my own mind at least, I am. When I write about gods and demons, I'm writing of things I know, although under different names.

You should meet my friends with CRPS -- and some of their parents. These people embody powers of creativity, diligence, determination, resourcefulness, strength and brilliance that make the great gods of prehistory look like punks, and leave modern adjectives beggared. Telling myths is easy-pie after talking to them!

If we should stick to writing what we know, then I've been to Hell and back so often they've installed a revolving door for me. I've wept on the knees of Hera. Sedna is my sister. I've heard Taliesin's lament. Coyote has my home address, and comes over (too often) for tea... I have my suspicions about what he puts in his cup -- and mine.

I won't discuss the demons, except to say that they, too, can usually be healed. But it's always by the thing you wouldn't think of.

"O..kay." Checks my head for tinfoil hat. "But what does mythology have to do with CRPS?"

It gives us back the unstoppable inner part of ourselves that can defeat it in the end.
And that's good medicine.

Tuesday, January 15, 2013


This picture shows the only thing I can do with any real success right now.

Each time a piece goes in, I soak up the little shot of dopamine that success experiences release.

It might help that, in this friend's household, it's mandatory to ring the bell when a particularly difficult section comes together, so everyone can look up and give a supportive nod.

The pattern-matching uses a soothingly primitive part of my visual brain, one that's pretty much unaffected by CRPS.

The gentle motion of hand and eye back and forth, back and forth, soothes the central nervous system.

What's ironic is that I realize I'm in recovery from a long damn case of too much too often too fast, but right at this moment, I feel stupider and weaker than I have in months.

I think I'm overdue.

Saturday, January 12, 2013

A great flight

The first leg of this flight was the best I've had in years. I chit-chatted at the gate with another invisibly disabled person for half an hour and the three of us (including his wife) kept each other very amused, then wound up with not just one, but two, delightful neighbors.

No sooner had I noticed, and enjoyed, the fact that I could converse for an hour and a half without saying "CRPS", than one of my lovely neighbors turned to me and said, "And what do you do?"

"I'm a writer." A surefire conversation-starter, that.

Inevitably, "What do you write?"

I talked, not so much about the disease, but about my core group of CRPS friends, most of us in different countries. I described our ongoing efforts to publicize the disease by surfacing the art and creative work of people with CRPS, of pooling our own information about what works both within and outside the standard medical model, and our hope, one day, to be funding research to quantify what works in fields that have been completely overlooked (I'm being tactful) for so long.

I got what could be THE critical referral to a lawyer who has relevant experience in nonprofit structure. That alone might have been worth the price of the ticket.

Then the entire plane sang "Happy Birthday" to my other lovely neighbor.

It really was a great flight.

Departure day

With  uncharacteristically sublime timing and verbiage, I got us into a breakup conversation that was the kindest, most civil and caring one I've ever had. Hard to argue with the heart problems and needing to be where the doctors are a lot less likely to kill me by accident...

Two days later, it seems more like a stretch out than a break up, but I'm not sweating that. I can't take any more chaos, stress or drama, so I'm going to let things stand. The love is there, so why kick it to the curb? The world needs more love -- at least, mine does.

Given the year we meant to take to see if this would (or should) work out, it's reasonable to take that time to figure out what shape this connection -- with its own strange, resilient, unique strength -- should really look like.

I'm getting a healing break with an old friend whose life includes just the right mix of rest and activity, good food and indulgence, solitude and society.

Meanwhile, J is going to wash my car inside and out, and pull everything out of it and put it into storage so I can sort it back in more rationally -- as I've intended to for months. I didn't even think of that, let alone hint, I swear! He just thought it up himself, to make my life nicer and more manageable.

I'll bounce back to J's in early February to get my stuff and get the last business sorted, then go to LA to see my doctor and find a place to stay that meets my needs for awhile -- where he could come visit and try for some reality checks.

Anybody got a place in the warmer parts of the San Gabriel range for under $500/month? Where my lovely wolfish un-boyfriend can bring his considerably better-behaved dog? :-)

Tuesday, January 1, 2013

Bringing chocolate

I have to be back up North by noon on Thursday, to collect my mail, get the paperwork, meet one of J's many brothers, and catch up.

A friend is going to come up and visit me when I'm up North.  I actually have a friend in SF who likes me enough to make the drive. Pretty cool :)

J has been making friends with the neighbors, and there is nothing like friendly neighbors.

I didn't find a place to land in LA for my upcoming doctor stuff, but I did cultivate one real, very charming possibility for the future. Not open now, but maybe in a month or two. Which would be better for me anyway.

I've been meditating and doing a lot of spiritual work, and am bent on making as little room as possible for mean-spiritedness and ill-will in my life. This is a wonderful exercise because let's face it, it's a challenge to have no ill-will in these (apparently) increasingly mean-spirited times.

But I have a very welcome houseguest to see, a bf who's a bit challenging but extraordinarily loving, and the sweetest dog alive to get back to.

My bf's brother is going to be hanging around for a few more days. I find that comforting. I'm bringing chocolate.