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Pain Manifesto

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This came out of cold chronic CRPS type 1, a debilitating condition of intractable chronic pain, nervous system disruption, and multi-system dysregulation — destroying the body’s ability to manage heat/cold, blood sugar, immune defense, circulation, sensation, bone density, movement, vision, digestion, heart function, and ultimately survival.

“Standard” treatments don’t work well for me; moreover, they involve invasive procedures too brutal to tolerate and medications I’m either outright allergic to, or that impair me so profoundly I can no longer function. At all.

So I took myself off my meds, thought things over, and came to the following conclusions.

MY CHRONIC PAIN MANIFESTO

Yes, it hurts.
It’s going to anyway.

So should I hoard my days
And fast from life?
Comfort myself with poisons,
Blister-packed and FDA approved?

Some think it would be best all ’round.
I’d cure them if I could (heh!)
But I’m too tired for
Yet another pointless struggle.

The sunlight pours through trees like prosecco
And reminds me what it means to live:

Voices warm with love, the
Mouth-smack of good food,
The hug of hills and the
Rough snuggles of the sea.

Hoard my days? I’ll spend each one
Like it’s stuffed with jewels
Pouring through my hands like a miser’s dream.

Feast on this:
The cost of life is much the same.
The difference lies in how you spend it.

How is this relevant to medical science? For one thing, it shows just how badly off base it is in vivo. Like any manifesto, it makes an explicit declaration: fundamental attitudes must change.

Policy determines what will be profitable, and profit opportunities determine what science gets funded. There is no profit in fully-functioning people, but there’s plenty in people who are too sick to function but not sick enough to die … for awhile.

Policy could allow my insurance to cover the things that do work (massage, reiki, homeopathy, yoga), especially given the detailed and vivid documentation I’ve provided of just how well they work. Nobody will fund science studies on these in any volume, because it is so much more profitable to drug people into silence.

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Links between racial discrimination, stress and health

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A fine candidate for the ever-popular Department of the Blitheringly Obvious: Being treated horribly because you were born at the melanin-rich end of the racial spectrum makes your health significantly worse.

Moreover, this study supports what sociologists have said for decades about the deep difference between discrimination against Blacks and discrimination against Whites — it really is fundamentally different. Moreover, not all Blacks experience racial discrimination. So there’s a couple of common assumptions blown apart by a few blood tests and a little science.

http://www.sciencedaily.com/releases/2011/09/110914122315.htm#.TnJi1Jxg-40.mailto

Living under indirect and direct threats to your autonomy and survival can damage your health? No, really??

I know, sarcasm is unbecoming. It’s a little hard to resist, though, after so many decades of studies trying to “correct” for that and claim that Black people were just more poorly constructed and shouldn’t eat all that chicken & grits. /tears hair/

I’m delighted that this study has hit the net, because we could do with more of this kind of, “Well, duh, of course!” information becoming part of the provider mindset.

As I learned when a guy tried to kill me for his prejudices on my 21st birthday, it doesn’t matter if you belong to an oppressed group or not. (He thought killing Lesbians would be just fine, and since we didn’t have a man around…)

We are all in this together, and if Black people are being shut down, I could be shut down next. After race, disabled middle-aged single women are about as close to the care “toilet” as you can get without flushing.

History is rich with examples of this kind of trajectory.

Let’s keep our eyes wide open and our brains turned on. Especially when we’re talking to those in different categories than ourselves.

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Assessing live myelination — and dead CRPS!

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Fortunately, I’m bright enough to evaluate this extraordinary new method:

http://www.sciencedaily.com/releases/2011/09/110913103211.htm#.TnDL-iVvIQs.mailto

There are vague mentions in the literature of myelination in CRPS, but researchers are so busy trying to figure out how to pill CRPS — a highly pillable disease — that such mechanistic issues get surprisingly little play.

Myelin is the protective sheath of fat that keeps your neurons safe and warm, so they can do their work. Without myelin, your nerves can’t fire properly — or else they can’t stop firing. They need the myelin sheath. Little kids need to take in a certain amount of cholesterol so their growing bodies can build good myelination. Demyelination, that is, the loss of that sheath, is most famously known for its role in Lou Gherig’s disease.

I’ve long suspected that demyelination is both an important sign of disease progress and a powerful contributing factor to further degeneration of the peripheral, if not the central, nervous system in CRPS. However, there’s not much in the literature, probably because it’s a useless treatment marker in someone who’s beyond treatment.

This brings us to the particularly delightful issue of finding corpses to study, since until now we could only check myelination after autopsy, and those who donate their bodies to science are filed under what took their lives.

People with CRPS develop heart disease, cardiovascular disease, bleeding disorders, organ failure, vision impairment, and staggering depression as a direct consequence of CRPS. However, when they drop dead, get struck by a bus they couldn’t see, or take their own lives, we don’t say “They died of CRPS.” We say, “They died of heart disease, organ failure etc., traffic accident, or suicide” (– if we’re feeling kindly, “or depression.”)

Thus, there’s no way to identify the actual mortality rate of CRPS, although there unquestionably is one.

Diabetes, cancer, and AIDS get more dignity than this. I’d like to see our mortality rate properly attributed, not swept under the enormous rug of opportunistic conditions. This would contribute hugely to better medicine.

Doctors hate seeing patients hurt, but after awhile they can turn away from that, in order to drag themselves back to the office; they hate to see them die on their watch, and it makes them apply upward pressure on the reimbursement and legislative aspects of the care system.

There’s nothing like a mortality rate among those in their “productive years” to make legislators sit up and take notice.

I started nursing within a decade of the first AIDS diagnosis; my first job was on an AIDS unit. I’ve seen it work.

Let’s get our deaths properly attributed. It’s one last gift we can give our compatriots as we head out the door. I’m going to put it in my will.

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Full disclosure/reality check

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I aim to post here at least once a week. Obviously, I’ve been slipping lately.

While CRPS has seriously (if episodically) affected my cognition, the great advantage of dealing with CRPS alone, over dealing with being overmedicated for CRPS, is this:

I know when I’m not that bright.

The ability to self-assess is key, and I’m grateful for it. (Small favors, I know.)

When I don’t remember, I know I don’t remember; when I need context, I know I need context; when I have the data in mind, I can tell you just how high my degree of certainty is.

My brain works sporadically, but I know when it’s working. This is a big deal. The pharmaceuticals made it very very difficult to assess my own capacity, and that alone was functionally crippling.

Clinical takeaway: even subtle overdosing matters. Anything that acts on the central nervous system affects cognition to some degree. Boy, do I have articles about that!

As for now … My brain has had no slack beyond what I need for coping with daily life. There are a couple of fascinating-looking articles I’d love to review, but they’re going to have to wait until the pendulum swings back again.

Assuming it does, because let’s face it, there are no guarantees. Nevertheless, I’ll keep trying. Thinking and learning is what makes my life bearable, so I will definitely keep trying.

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Creativity, "vomit," "poison" and "agony"

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Here’s a fascinating insight into why creative ideas get creamed so quickly, without regard for their merit:

http://www.sciencedaily.com/releases/2011/09/110903142411.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fmind_brain+%28ScienceDaily%3A+Mind+%26+Brain+News%29#.TmOwKMTHEIo.mailto

It relates to our typically low tolerance for uncertainty. People would really rather suffer horribly with the devil they know, because the very idea of change fills them with such profound reflexive dread.

This is a useful datum for me to know in my ongoing inquiry into the intellectually indefensible aspects of medical science, as they affect my care. It’s a ray of light.

Why? Because, on the one hand, I grew up with a higher than average level of variety in life, so it’s not that scary to me; and on the other, my baseline state involves rather a lot of nausea, toxicity and pain, so the devil I know has serious competition. This reflexive gag-response to “thinking outside the box” has never made sense to me.

It has been clear to me for ages that people would rather suffer horribly and endlessly in their lives, rather than endure the mental discomfort of change. I’d like to know how to circumvent that, short of putting them through the same experiences as me. If those data surface, I’ll be happy to share them.

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Fundamental neurotransmission is not that simple

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This is the kind of discovery that leads scientists to say, “What’s happening is not a simple, monolithic process.”
And when they say that, you know they’re starting to pay attention. 
This fascinating discovery is a matter of function, not form. I gripe about the simplistic, even boneheaded science that seeks to uncover neurology by approaching it with a backhoe. This is one example of the more productive & telling approach, using the scientific equivalent of brushes and trowels. Good stuff, intelligent and apt. 
The radical new idea is this: the little blobs of neurotransmitters that sit between the nerve endings are not identical little blobs, but are in two separate sets of blobs. 
So what do they do?
The smaller group of blobs is the “recycling” set, called that because they get used and restocked each time the nerve fires. The larger group of blobs hangs back out of the way, and occasionally a blob takes off but not because the nerve just fired. Due to their relaxed attitude, these are called the “resting” set. 
In the article, the blobs are referred to as sacs (or “vesicles,” in med-speak.) They’re sacs in precisely the same way that the drop of water rolling across the hood of your car is a sac. The blobs have a sort of “skin” created by molecules gathering more densely at the surface, but nothing more. 
It’s an important layer of molecules, though, since the detectable difference between the “resting” blobs/sacs and “recycling” sacs is the proteins that gather on their surfaces. 
Now, to discover what those proteins mean … That’s another study. I look forward to it. 
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Scared of the wrong things: depressive chemistry and danger

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Funny how the whole delicate neurological/neurochemical structure is so interwoven:

“…The researchers suggest that the strange defensive behavior exhibited by the enzyme-deficient mice may actually reflect a limited range of adaptive responses and lack of emotional flexibility — the mice may only have one gear for fear.”

We’ve all known people who make exaggerated choices around danger that make no sense to ourselves. (Having heard my mother and my sometime partner on the subject of my riding motorcycles, I’m pretty sure of that.) However, only at my most desperately depressed have I engaged in unsafe sex, which is the second stupidest risk I can think of (the first having nothing to do with motorcycles.) 
The role of MAO-A and depressive neurotransmitters, combined with the dopamine-deficient sense of hopelessness and diminished executive function, make that make sense: 
“Monoamine oxidase A is the main enzyme in the brain that breaks down serotonin, norepinephrine and dopamine…”
Which makes me think that it’s possible, in humans in vivo, to be deficient in both MAO-A and in dopamine, serotonin, etc. It would explain a lot about certain mental states, even though it seems chemically tautological at first glance to be both Big 3-deficient and MAO-A deficient. As I’ve learned, though, deficiency and dysregulation do have additive effects, they don’t cancel each other out. 
I’d like to see more studies which monitor serum and brain levels of these key chemicals together, preferably in humans. Science tends to take the simplest possible approach, which is rarely the most realistic and not necessarily the most telling. It does get funded and it does make it simpler to design the studies. 

I look forward to having more sophisticated thinkers (and funders) get into this branch of psychoneurology, since all these lively lovely tiny bits of info won’t come together in a meaningful way until we can look at them in concert with a higher degree of exactitude and completeness. I suppose I’ll have to be patient. And careful. 
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Good medicine

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Long silence. It’s not that I’ve been uninspired by recent medical science.

I’ve been traveling, spending a lot of time with people I haven’t seen in many years. They’ve turned out to be the kind of people who, as the body get more chewed up, the personality gets richer and smoother. Proud to love them. Delighted to be with them.

Now that’s good medicine.

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Mechanisms of the special neurologic destruction caused by blast injuries

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This is absolutely thrilling:
“Bioengineers identify the cellular mechanisms of traumatic brain injury; New hope for treatment of TBI in veterans wounded by explosions”
http://www.sciencedaily.com/releases/2011/07/110722213427.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fmind_brain+%28ScienceDaily%3A+Mind+%26+Brain+News%29

These scientists discovered the answers to two frustrating questions that have been blocking effective treatment of blast-related head injuries (TBI, or Traumatic Brain Injuries.)

1. What happens to the brain’s axons? Why do the vital communication-arms of the brain’s nerve cells just disappear?

2. Why does TBI from explosions cause the brain’s blood vessels to shut down and turn themselves off, even though the the injury doesn’t seem that bad?

The horrific health cost to our soldiers on active duty has included being blasted by explosives. These cause profound and persistent brain injuries that seem too severe for the amount of shock experienced by the brain.

1. The axons are part of an interlocked structure that’s woven together by cells and intracellular “glues.” This structure is shaken apart by explosive shock. Axons have to release their connections and shrink, retreating into the body of the cell. This destroys the physical functional structure of the brain. The person instantly loses memories and processing power, as well as a pervasive host of brain tasks.

2. The vessels undergo a mechanical stretch caused by the explosive force pushing through the gelatinous mass of the brain, and then, as a result of that stretch, they become super-sensitive to the chemical messenger that tells them to snap shut and then stop acting like vessels at all.
Normally, #2 only happens in the case of severe hemorrhagic (that is, bleeding) stroke. However, we now know that it also happens in blast injuries that otherwise cause less apparent damage.
Clinical note: Blast injuries to the brain are uniquely insidious. They cause diffuse injury that’s invisibly disabling and incredibly hard to manage, let alone recover from significantly. Behavioral issues and so forth are mechanically and chemically imposed on the soldier’s brain; they are not wilful choices on the soldier’s part.

A lot of fundamental retraining has to be done, because emotional, cognitive and social skills have to be significantly rebuilt and rewired. The wiring that the soldier has built on since childhood has been torn up on duty.

Thanks to our present understanding of neuroplasticity, there’s hope and a path to develop, but it takes time. On top of psychological trauma and the damage that causes to the amygdala and sometimes the hippocampus, it’s a hell of a lot for any layperson to grasp, let alone try to handle.

One of the truly thrilling things about these findings is the discovery of a process that keeps the axons from pulling back in the first place. At present, it works in a Petrie dish if given within 10 minutes of injury; hard to see how that could work in combat.

If it could be formulated to be used in a person, it would still have to be administered extremely fast. Maybe send each soldier out with an inhaler of the stuff? Or a nose spray? A 50-cent bottle apiece to save millions in treatment, lost wages, cost of care, incidental costs on the family, for each injured soldier. Seems like a bargain!

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Chronic pain in homeless people not managed well

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Today’s very promising applicant for the Dept. of the Blitheringly Obvious: “Chronic pain in homeless people not managed well”:
> http://www.sciencedaily.com/releases/2011/07/110721112613.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fmind_brain+%28ScienceDaily%3A+Mind+%26+Brain+News%29
My cynical side is just delighted that people got paid to write that down in black and white. Smacken zie forehead.

For a change, I’m going to ignore the disingenuous and smug language putting inappropriate blame on the patient, because there’s so much basic information missing.

As anyone who has been homeless or worked with the homeless knows, indigence involves the following facts of life:

– Assuming you can even get to treatment sites …
– Doctors won’t take you.
– Hospitals don’t want you.
– Clinics can rarely fit you in.
– Pharmacies hate to see you — a gaping well of need — coming through the door.

And that’s just the medical side. In regular life,

– There’s no decent surface to lie down on.
– There’s rarely a good way to get clean.
– The concept of “good food” is irrelevant. You have to eat what you can get, regardless of whether it triggers a flare or messes with your brain, and are expected to be grateful.
– If you’re a woman or a kid alone, you’re going to wake up with some guy on top of you. This is very bad for back and hip pain, among other things.

Facts you should know:

– Being homeless is a perfect recipe for mental ill-health.
– Disabled people are over 10x more likely to be homeless than their equally-educated & -skilled cohorts.
– Chronic pain is part of most disabling conditions.
– Because of the economy, and despite the masses of money floating around in the stratosphere, disability and indigence are hitting historic highs.

Clinical take-aways:

– Take note of the link on the right to contact your political representatives. Let them know how you’d like the situation to change.
– ALWAYS ask indigents about pain: what, where, when, exacerbates, what they do about it, & most importantly, what they’d like to be able to do about it. Answers to the last will surprise you, because most of these people aren’t stupid. (Just weird.)
– Provide freebies, including toothbrushes and emesis basins. What they can’t use, they can barter with.
– When prescribing, be as generous with free samples as your drug reps’ handoffs permit. Your insured patients only need enough to get started; your impoverished patients need to get so used to feeling better that they’ll prioritize accordingly (beg, borrow & steal for their scrip instead of their booze? It happens.)

Keep in mind that a few days’ relief is just a break, but a few weeks’ relief lets them start to function for a change. Some will abuse your kindness, but big deal.

The rest will take the opportunity of having their burden lifted a little, to move forward in a way they couldn’t do before. And thus a good deed goes onward, invisible to you but not to those ahead.

Make it a habit. Eventually, you’ll see it come back to you. The feeling when it does is indescribable.

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