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.

Leaping

I'm finally putting a book together for publication. I sent the first part out to readers for feedback, coasting that post-prep phase of being certain it's practically perfect and totally wonderful.
Unlike the delightfully daft P. G. Wodehouse, I only think my work is perfect for about half a day. Then, with no warning, everything changes: my heart hits my feet and I become certain that what I've just thrown out all naked and unprotected into the world, is nothing more than a puerile squall which will soon be riddled with well-deserved flaming arrows.
I'm eating too much sugar (for which I'll pay the price in pain, don't worry) and trying to settle down for a bit of brain-soothing meditation. Then a bit of light boatwork, maybe some laundry ... and then a couple of hours on the next part of the book. Because what I think of it doesn't matter.

Pertinent pain data

Here's a little gem I found while cleaning up my hard drive. It's from early last year...

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Each year, 80,000,000 (that's eighty million) Americans seek professional care for pain.

Combine the numbers of Americans who seek care for diabetes, heart disease, or cancer -- three much sexier issues -- and they still aren't as many as those who seek care for pain.

• Pain is the cause of 25% of all sick days.
• 50% of those with nonmalignant pain have considered suicide.  (That puts a real crimp in a family's earning power.)

The consequent costs of lost productivity and reduced contribution to the tax base & economic flow, the social impact with concomitant loss of productivity, etc., has never been quantified (that I know of), although it certainly exists. With that large a base, and that wide a ripple-effect, it has to run into billions of dollars per year.


Each year, we spend $100,000,000,000 (that's one hundred billion) on the direct costs of dealing -- badly, expensively, and inconclusively -- with pain.

That same amount could buy:

• More than one-fifth of Medicare’s entire 2010 budget.
• 60% of 2010 Federal spending on long-term unemployment (to which disability is the single biggest contributing factor, and pain is the single most common factor in disability.)
• 5 weeks of current military spending, with two wars to prosecute and unprecedented numbers of walking wounded to care for.

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I had forgotten those facts.  I was geekishly delighted to find them. But it is definitely an answer in search of a question, and in this case the question is this: why the hell are we wasting so much money, time, life and energy on handling pain so badly??

There are profound cultural and economic reasons why the present, appalling system is still in place.  I'm not rich enough to face those reasons down so I'll leave that as an exercise in logic for the reader: follow the money.  Who profits by this system?  Who funds it?  Who benefits, and of those who benefit, exactly how do they benefit? What do they give up or pay, in order to reap those benefits? What are the benefit/drawback profiles for the many different stakeholders in this system?

Pain patients are the least important stakeholders in this system, and that doesn't seem right to me. I realize I may be biased.

Sorting out the answers could keep you busy for awhile, but once you figure out a couple of common denominators, it starts to fall into place very easily. It's a bit disconcerting at first, though.

The point, as far as pain control is concerned, is this: we're studying the wrong things about it, and we're treating it the wrong way around.  There is no conclusive success path on the present trajectory, just increasingly expensive ways of mitigating these largely failed clinical (and economic) strategies.

And that's today's ray of sunshine! :)

References:
“Chronic Pain Fact Sheet”, http://www.cssa-inc.org/Articles/Chronic_Pain.htm (journalistic summary)
“AAPM Facts and Figures on Pain” , http://www.painmed.org/patient/facts.html (cited sources include the AMA, ADA, AHA, NIH)
THOMAS (Library of Congress online)
Office of ppp, http://www.whitehouse.gov/sites/default/files/omb/budget/fy2011

Reality check bounce

I got a settlement last year of $40,000. In 8 months, it's nearly gone. I ran through my numbers and realized that all that money went into taking care of myself (clothes, for the first time in years; chiropracty, not covered by insurance; acupuncture, which should be covered but is sometimes improperly denied; $300/month in supplements which aren't covered, but do let me function; $500/month for fresh whole food that keeps me from getting worse, more important now that I'm allergic to inexpensive foods like wheat, corn and rice; massage prepayments, for my masseur who was stuck abroad but is finally back & starting to work on me.) There were a couple of large one-offs, but they total the equivalent of the other 3-4 months of the year.
Although I'm certainly far better than I'd have been without it, I'm considerably sicker, weaker, sorer and more mentally impaired overall.
Meanwhile, insurance has -- most improperly -- denied any of the care that they are supposed to pay for and have covered in the past.
This disease is a bit like cancer in that, if treatment is delayed, you're liable to lose ground, and there's no realistic hope of regaining the ground you lose.
I've been pegging my hopes on federal disability (the dole, but a relatively generous dole) but even that will provide only one-third of what I need to live on. If I weren't tending this illness -- and could eat grains -- it would be enough; that gives scale to these expenses. It takes 40k to support me for a year and the best I'll get is 14.4k.
If I move ashore, which I'm trying to do (finishing up the boats and selling them being this winter/spring's project), then it will be considerably less, because rent ashore is so high. However, it's becoming impossible to function without hot running water, a bath and a laundry machine. Catch-22, or at least a choice of impossible situations.
If I could get a year's funding for the intensive health work I'd hoped to do this year, I'd stand a chance of regaining enough ground to work and earn. I don't see how to make that happen. I may be lacking in imagination.
Anyway, I'm beginning to wonder if it makes sense to keep working on figuring out how to mend. I've contemplated the babbling fool I'll become on the present trajectory without supplements and so forth: pride and dignity aside, there's no realistic way to bear it -- the waking with a muddle in my mind, the increasing helplessness and isolation as my friends get more and more frustrated with dealing with me, the waxing helplessness in the face of the most basic tasks like budgets and shopping, the inability to make decisions on the basis of imperfect understanding, the constant wounding of my amour propre as the patronizing tones and "there, there" remarks continue to mount. The startling shafts of clarity when I see just how stupid I've been, and knowing I'll soon fall into the fog again. It's simply unbearable.
Had I grown up unintelligent, I'd have the skills to manage life with fuzzy brains, but I really don't. It's desperately confusing and the constant humiliation doesn't help.
When I can just sit down and write, focusing on the one thing for a stretch of time, I do fine. (I hope that's obvious.) The hopping about from topic to topic, without having time to sink into one and pull up the mental flash cards, is becoming impossible. And that's what life requires.
My mind is thixotrophic: quick moves bounce right off; it takes time and gentle pressure for me to get in.
Though without the rigorously pure food and costly supplements, that focused writing-mind doesn't work either. It can't even start.
I read up on Woolf and Hemingway some years ago. I felt the usual poignant poetic feelings about their deaths, gilding over a sneaking suspicion that they'd copped out. But, as my own mental life becomes ever more fraught, I become ever more awed at the strength, grace and nerve each brought to their final stages. The words that sounded just a little bit like whining or wounded vainglory, were really a symptom of the inadequacy of language in the face of an assault on one's core that defies meaning itself, let alone language's ability to convey meaning.
I need more options. I need real care. I'm out of ideas.
I liked being happy & relieved last summer. I could do with more of that!