Recuperating

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.

Remembering and re-membering

I've been doing intensive massage and craniosacral therapy for the past few weeks. I'm reminded, of course, that the neurological system extends throughout: bodies have memories. (There is some confusion about how those memories are stored. We'll figure it out eventually.)

This, in turn, reminds me that the brain is malleable. CRPS changed it,

 

and if I'm thorough enough, persistent enough, and clever enough, I might be able to change it again.

Persuading the brain to remap itself is a remarkable process, because the brain uses the language of vision and metaphor and it responds most strongly to longing and fear. (This is one reason why mythology is so helpful, given the right story: myths tend to have powerful visual metaphors and visceral emotional force.)

The brain is also a monument to inertia: once it has started going down a certain path, it's very hard indeed to persuade it to change course. I find I have to be firm, focused, and relentless, and since I also have CRPS-related ADD and periods of unbelievable vacuousness, that's tricky… (I'm working on how to construct a webpage that has all my tricks and routines easily accessible, so I don't have to remember what to do when my memory is at its worst. It's a heck of a design problem.)

One good way to access the central nervous system (CNS) in a way that specifically rebalances some of the most critical areas of the autonomic nervous system (ANS) is through bodywork, like therapeutic massage and craniosacral therapy (these link to my providers -- both warmly recommended.) Here are a few of the reasons why.

• Humans, and other mammals, are hardwired to respond deeply to touch. The "safe touch" of good bodywork is profoundly soothing to the ANS, and since the ANS drives the multi-system dysregulation of chronic CRPS, this is a powerful thing.
• The rocking motions of massage stimulate the parasympathetic nervous system, which has a lasting calming effect.
• It releases endorphins, which reduces pain and brightens mood.
• The tissue stimulation improves and stabilizes blood pressure and circulation, major factors with CRPS and dysautonomia.
• Swelling goes down, as circulation is mobilized.
• Hyperesthesia (pain to light touch) and allodynia (blunted sense of touch) improve because of something that clinicians call "desensitization", a hostile sounding word which really means, "developing appropriate sensation."
• Hormones stabilize, perhaps due to the improved circulation and more stable ANS.
• More stable hormones improve mood, reduce pain, and stabilize immune and inflammatory responses.

Therapeutic bodywork does all that. There is no pill or surgery in the world that can come close. Once I get my links sorted out, I'll rewrite that for the medical blog. The value of good bodywork simply can't be overstated.

A couple of weeks ago, during several treatments in a row, I had the curious sensation that my right arm and shoulder were being knitted back into my body. I hadn't realized until then just how completely I had succeeded in shutting them out.

The still, quiet voice inside me indicated that dissociation should be intentional, purposeful, and temporary; if I wanted to be well, it could not be habitual. My inward guidance wasn't telling me to stop dissociating (that is, mentally and emotionally separating myself from that part of my body), but to do so only when I needed to, to separate from too much pain.

Remaining dissociated is like disowning that part of my body, and I can't persuade it to do anything when I've essentially cut it off. I need to persuade it to heal, and that's a tall order.

During today's craniosacral treatment (from the delightful and competent Sonja Sweeney), I remembered standing on the wall of my French-bed corner garden a few years ago, right before I fell off it and smashed my tailbone on the edge of a ramp. Pathetic lavender and dying weeds filled most of the bed, since I hadn't gotten far with digging it up. Behind the glorious, fragrant, massive rosemary against the back edge, a 20-year-old growth of climbing roses spilled green and pink everywhere.

I had just completed a course of treatment that put my insides in the best shape they'd been in years. My stomach no longer bothered me, I was healthier and stronger, my stamina was better, and I was still inside the five-year mark with RSD.

What's interesting is that, during this treatment, I was remembering the moment right before I got injured, not right after. My eyes were filled with roses and my nose with rosemary, and I was sketching out great plans for my bit of garden.

As I walked away after my treatment, that quiet inward voice said, "Remember pre-injury, not post injury. Remember that."

It had to start with the rosy garden, because before the CRPS injury, I was working at Borland and was so involved with my work (which I loved) that I really had no idea how magnificently fit my body was, by the time I got injured. I simply didn't notice it.

I enjoyed the activities of riding to work and running miles through the redwoods, but when I thought of my body, it was to criticize function, appearance, or both. (Except occasionally when I noticed those legs… :-))

In the rosy garden, I was aware of being better. And that was the point.

My brain needs something to reach for that has inward meaning and emotional oomph, so vague dissatisfaction is not a helpful point of reference. A sturdy inward "YES" is the goal: re-remembering this body, with all attached limbs fully integrated, blood coursing warmly throughout, everything moving and working, and that radiant feeling of blooming health and returning vigor.

I'm 46. I don't expect feel the way I did when I was 34. But I know 60-year-olds who could kick the ass of me at 34. Being well is not an unreasonable idea, keeping in mind that I'm going forward, not back.

I'm inventing a frame of mind that doesn't exist yet. Both remembering and re-membering give me important clues as to what it should be. I'm delighted to have figured that out.

Moderation, part 2 (with footnotes)

Last week’s experimental overdose was not without consequences. There were a couple of days of the most astounding vacuousness, combined with a lethargy and inertia so profound that I find it hard even to remember... Also, record-setting levels of forgetfulness.

So that was the "overdoing on bad stuff" side of the question.

Because I don’t know when to quit, apparently, I did another experiment yesterday: allowed myself to run out of greens, and had a whole day without my Brain Food shakes. That was the "neglecting the good stuff" part, because of course //wide eyes// one must have both the yin and the yang.

Here’s how that went:

I was scheduled for a massage at one, but my massage therapist had (for once) forgotten to change it in his schedule, so he thought it was at noon. As I was leaving the house, I walked through a cell signal (few and far between here) and got the happy blurt that tells me I have a message. It was Ed, my massage therapist, calling to see if I was all right because it was 30 minutes into my session and I wasn't there. (It’s not like me to be late.)

Here’s the fun part: I stood there, phone in hand, mentally cursing because now I had to go back in the house and look up his number.

While holding the cellphone he’d called me on.

I went back inside to where I keep my cell phone plugged in, looked at the empty space, realized my mistake, cursed inwardly, went back outside to make the call. Before I started dialing, I realized my vision was too bad to drive without my glasses. (It varies with my brain state.) Slightly panicked, I went back inside for my glasses. I didn't want to forget and drive off without them, which I feared I might be capable of.

By the time I got there, I’d forgotten why I had gone inside, and was very annoyed with myself for wasting time. I stood there, staring into the blurry living room which I could not see across accurately, wondering what the hell I had come inside for and why it was important enough to keep me from driving off.

I went back outside, and was almost at the car...

when I realized, again, that I couldn’t possibly drive like that. Muttering, “Glasses, glasses, glasses,” so I wouldn’t forget again (which I was fully capable of), I went back inside and retrieved them.

I came back out, found my way to the phone zone, and made a slightly hysterical call to my massage therapist. I was now 15 min. late by my time, and an hour and a quarter by his. Bless his golden heart, he calmed me right down, and my day was considerably better soon after.

I’m preparing for a cross-country meander, meant to be conducted within my limits of capacity – mental, physical, and financial – which may be yet another fantasy, but at least it will be an interesting one.

I’ve taught myself 2 important lessons this week, though, and it’s good to be absolutely clear about them before I have so much else to think about:

1. Sugar in strictest moderation. It used to be a matter of avoiding pain, but this was a neurologic meltdown of a depth and duration best avoided in future.

2. Eat my damn Brain Food shake. I didn’t spend all these years figuring it out, just to dis my own discovery. Figuring out how to get them on the road just became the most important job of my life!

Is it just me? I sometimes wonder how many of us, who turn to sweets for comfort and let our distaste for kale exceed our longing to function (as I certainly did until very recently), could be doing so much better.

My pain levels rest very low, as long as I eat right and drink enough water. And my mental function -- as, wow, I have reeeeeally demonstrated this week -- is hugely affected by what I do, and don't, get into my system.

• If I still ate wheat, I'd be so thoroughly impaired I'd be in need of daily care to make sure I showered and ate and -- literally -- didn't wander into traffic. 
• If I still ate corn regularly, I'd be so sore, cranky and ill-behaved that it would be impossible to find an aide to help me. 
• If I still ate rice I'd regularly be in so much pain I couldn't think of anything else.
• If I still ate grains in any amount (even of good quality, as I used to), I'd be nearly immobilized by the extra weight I'd be carrying, making that care even more necessary but even harder to get. 
• If I ate sweets for comfort, I'd never really find it. But I'd keep trying, probably by eating more sweets! With insulin resistance, it's a vicious cycle of longing with temporary and partial satisfaction overlaying a bottomless need.

How many undiagnosed food sensitivities and metabolic dysregulations are deepening the levels of Hell in which CRPSers live? Especially given that it's a disease of the central nervous system, which most certainly does include the gut? It really makes me wonder.

The largest concentration of nerves outside the brain is in the gut, and there's a breathtaking new field of science about that, called gastroneurology or neurogasteroenterology (it's only been around for 20 years, so the name is not yet fixed).

Metabolically, I'm just not that weird,  that so many core, neuro-immunologic issues that show up in me could be all that unusual. It makes me wonder if my brain is really all that broken, or if it's just signalling really hard...

I know how desperately hard it is to change the way you eat, because it means changing the way you have to respond to your most primitive longings at your most vulnerable and achingly needy times. (I have an extremely high tolerance for uncertainty and an extremely low one for needless stupidity, especially in myself, and that has been a great help in working this out.)

It helps to have a structure worked out and some sort of support: hence the success of Weight Watchers and clinician-approved eating patterns like the Stone Age diet or the South Beach Diet.

These dramatically different strategies coexist because ... drumroll please ... we aren't all the same! Some will work on some, others will work for others.

Personally, I'm intrigued by the immunological component of digestion and assimilation (another key characteristic of gastroneurology), best addressed by the Blood Type bouquet of diets. The Type O eating pattern (with added wheat) was what I did naturally when I was fit and well, and guess what, I'm type O.

mmmmm, lunch!

But things have gotten weirder since then...

Now that I’ve finished my tea, it’s time for breakfast. Guess what that’ll be? :)

Links:

• Last week's divine excess: Moderation... in moderation 
• Ed Connor at The Healing Zone: The Healing Zone Therapeutic Massage
• My Brain Food shakes, Recipe: Kale Shake & the Sunshine Band
  
• The defining book of gastroneurology, The Second Brain, by Michael Gershon, MD
• Slate magazine article from 2007, Should You Trust a Gut Feeling
• NY Times article from 2011, The Other Brain Also Deals With Many Woes
• Fascinating but deeply geeky paper explaining this field, Fundamentals of Neurogastroenterology: Basic Science
• Weight Watchers official site: http://www.weightwatchers.com/
• Dr. Voegtlin's original book on the Stone Age, or Paleolithic, Diet: The stone age diet: Based on in-depth studies of human ecology and the diet of man ...plus a more recent reference: Wikipedia on the Paleolithic diet
• Dr. Agatston's South Beach Diet book: South Beach Diet: The Delicious, Doctor-Designed, Foolproof Plan for Fast and Healthy Weight Loss
• Dr. D'Adamo's page for Blood Type diets: Eat Right for Your Type

Mind: more useful than you think

The power we have over our own minds is so often underestimated -- or misinterpreted. The "you're sick because you obviously don't think the right thoughts" frame of mind makes me livid -- it's inexcusable.
But mental & emotional discipline is absolutely key to my function and survival. I know every moment I take to notice enjoyment, my brain gets a shot of pain-reducing endorphins and decision-improving dopamine. Every time I grab my brain when it wants to go to pain-lashed catastrophizing, and stop and do a reality check and look for good things, I know I'm cutting the pro-inflammatory cycle and reducing a pain-spiking dose of cortisol.
It's bloody hard to remember to do at times, but practice makes perfect and I do get better the more I work at it.
... Speaking of neurotransmitters ...
I've been meaning to write a primer on brain chemistry and neurotransmitters. It's so convoluted I don't know where to start. I'm thinking of setting up the table (or 3-d matrix!) of chemicals, body parts & functions, then writing about one segment of that at a time. As my Mom says, cut large tasks into bite-sized pieces, then go after them one by one.

Out of the foggy night: Overmedication and abandonment issues

I was overmedicated on mixed psychoactives (in plain English, my doctors had me on too many pills for CRPS) and, at the beginning of February, I ditched most of them. The following weeks were pretty hideous in an interesting way, as my brain's natural chemistry struggled with the messy extrication and departure of the pharmaceuticals.

It feels like washing my dirty laundry to say this, but I suspect I'm being too finicky: LOTS of people get overmedicated by well-meaning medicos who don't talk to each other.

The pills I stopped were SSRIs and SNRIs. (I can't remember which was which.) The upside to this class of medication is that it specifically relieves nerve pain, in addition to helping lift depression. (I wrote an article, buried in my archives, about the tiny handful of neurotransmitters, and how each one has many jobs. Serotonin, for instance, helps digest protein in the gut; dopamine mediates decisions. I'll dig it out and post it on the Biowizardry blog.)

When you have CRPS and you're overmedicated on neurotransmitter Reuptake Inhibitors (of whatever flavor), your brain is in the toilet and there's no way to tell which mental blurch is due to drugs and which one is CRPS. I couldn't always tell how well I was thinking, though I kept trying anyway. Perceiving how I felt underneath it all was like trying to determine the shape of a bomb while it's still in the box. I was usually clear about what I remembered and what I wasn't sure about... but just try getting anyone to believe you when they already know that your brain is not firing on all four cylinders.

There's a lot of grey area in the grey matter, when you're overmedicated and have CRPS.

I'm not sure how much more crap there is to clear out, but I know I'm a lot clearer about what's going on right now. I look back on the past two years with some dismay, as I try to rebuild the relationships I dented, and (most painfully) try to understand why those who should have known better had simply abandoned me to that foggy night.

[photo credit http://www.flickr.com/photos/jfraissi/2165047274/]

But anyway.

I am remarkably clear, now, about what I remember and what is nothing but a sudden hole in my mind. I'm clear about whether I can think right now or not. I'm able to feel the brain crank up and crank down, so I can communicate to others, "I can do this!" or "Gotta stop now!" And, for the first time in years, I can get something done on some sort of schedule. Not a consistent or reliable schedule, not to any sort of clock, but just to know that I CAN do something is quite a step. I'll take it and be thankful!

I still have CRPS. My medication is still problematic. I still have sudden, random, Swiss-cheese-like holes in my memory and cognition. BUT -- and it's a big but! -- there is no grey area in my grey matter any more. I know if I know, and I know if I don't know.

And that's information I intend to use.

Dopamine, poverty, and pain: the lighter side

Executive decisions are made in the forebrain. The information that goes into them cones from the sensory cortex (nearby) and the hypothalamus (back in the dark heart of the brain.) The execution of those decisions happens in the pituitary, among other places. In short, there's a lot of nerve-impulse mileage laid down between the moment you feel the itch in your armpit, check your surroundings for privacy, scratch away, and give a happy little sigh of relief. Lots of neurotransmission there.

Dopamine is the neurotransmitter of executive decisions. It's a daughter chemical of adrenaline, and your adrenal glands share blood supply with your kidneys; interestingly, Chinese medicine views the need to make too many decisions as being hard on the kidneys. Makes perfect sense to me. But that's a red herring.

The key is, without dopamine, the decision can't get from the frontal lobe to the action parts of the brain. Dopamine levels can be knocked back by pain, drugs (including the prescribed ones), depression, poor diet, and -- of course -- overuse.

People who have crippling pain have to make exponentially more decisions than those who don't. Every action is measured against an internal set of standards that don't exist for normos: how much pain will lifting that cost me? That car door -- which way should I turn my hand to minimize damage when I pull it? How many function-dollars do I have left in my body's account -- enough to do laundry _and_ shower? Or should I do just one? If so, which one is more necessary?

Poor people have a similar ceaseless train of calculations running in their heads, but with different parameters. Can I get a little meat this week? What are my produce options, since there's no good market in this area? Which neighborhood's market has the best prices? Have I got the bus fare? Will I get into trouble over there? How do I blend in? Can I call in a favor to get some Tylenol too? These headaches are killing me.

As a poor person with pain, I figure I make easily 20 times as many decisions -- on a slow day -- as a normal person my age. When I was still overmedicated, I used to feel like a loser for not making 100% perfect decisions 100% of the time; in fact, I occasionally just goofed. And the trouble with living within such narrow parameters of function and finance is, the occasional goof can put you behindhand for a very long time.

It's easy to sneer at those who make weird decisions like paying for a flat-screen TV instead of a semester of junior college. But try wringing out your dopamine every single blessed day, week after month after year, and see how well you do. These people don't have decision-making disorders, so much as decision-making overload.

If you're poor or in pain, take some credit for getting through the day. Cut yourself a little slack. Take a moment to rest and relax. See, it's easier already.

Being hypercritical just uses up your dopamine faster. Why? Because criticism is the result of long strings of decisions. It's very dopamine-expensive. (Ever wonder why hypercritical people don't seem very happy? Now you know.)

Take a moment to be happy, to notice what's good. Those moments rebuild your store of decision-making, anti-depressant dopamine. Each natural, happy little sigh is a shot of the stuff.

Sniff that flower one more time. Scratch where it itches (preferably in private.) Feel the sun warming your head. Laugh with your friends. There's a reason why it feels so good. It really does make you stronger. It freely gives back what life makes you use. And it's not too hard to find a reason to be happy.