Wednesday, September 28, 2011
Mice stem cells guided into myelinating cells by the trillions
For once, I've got no logical criticisms to make. This is brilliant work which fills me with hope for those of us dealing with demyelination and all the havoc it causes. Here's hoping it translates well into human models, and soon.
Sunday, September 25, 2011
"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.
Thursday, September 15, 2011
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.
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.
Wednesday, September 14, 2011
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.
Monday, September 12, 2011
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.
Sunday, September 4, 2011
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.