Awash in "wow"

We are putting together a program called, “CRPS: Art & Spirit.” We aim to collect information — and creative work — from those who manage this disease with extra poise, focusing on what works (rather than profits or politics) and finding our way towards a cure.

The paperwork involved in getting funding and charitable status is a bit more than I can manage. Getting help with that is my holiday gift from Mom.

Designing a web page is essential to getting any message across. After months of flailing, a design suddenly came together that includes everything we need. (Details and testing are still in process.)

A hurricane hit as I was preparing for my journey. Apart from a few bad pain days and a localized power outage that provided some enforced rest, it’s gone easy on me (so far).

I might be able to get some small-business breaks from my bank and phone company (and if I do, I’ll link them.)

The clouds are clearing in more ways than one.

Curiously, I’ve started wondering what I’d do if I no longer had CRPS. I realized that, given how much has been beaten out of me and how much under the surface has been revealed, I’d probably NOT sink back into anxious denial and run as far from this as possible (as many with solid remissions do.).

I could be wrong but I think I’d stay in the thick of it, riding herd on this project with the power and vigor of an _able-bodied_ person — one who doesn’t take it for granted — and keep working a cure for everybody who has it.

None of us is free until all of us are free. I feel it in my bones. Even a perfect remission won’t take me off this road. That well-honed determination will keep me in the game. And, with a structure & funding to back me up, it’s hard to see how any success could stop me.

But what do I know? I’m still in the thick of the illness as well as the work. No point in imagining that things are different, but it’s fun to think about.

Dreaming is free, and when barriers seem to be rearing up only to fall away, anything is possible. 


Facial recognition is wholistic

This blog has been on hiatus as I’ve been dealing with a body-hostile healthcare system, insurance sociopaths and delusionally self-infatuated doctors, and I didn’t want to take it out on the science.

This charming study turned up today and led me back here:

‘ScienceDaily (2011-12-02) — “Face recognition is an important social skill, but not all of us are equally good at it,” says a cognitive psychologist. But what accounts for the difference? A new study provides the first experimental evidence that the inequality of abilities is rooted in the unique way in which the mind perceives faces.’

The brain uses a wholistic method for recognizing faces, whereas recognizing objects is more analytical — meaning that the object is parsed out by the brain and assessed in chunks. Doesn’t work well on faces, though.

One very pleasing, intelligent thing to note: these researchers concluded that the logical next step is to train people to use their brains more effectively — not to look for yet another drug to fiddle with one part of a complex process and leave the patient more helpless than before.

My own facial recognition has plummeted with the evolution of CRPS, but it’s a skill I acquired rather late in life. I’d always recognized people by the way they held themselves and moved — a different region of the brain entirely. So I trained myself to recognize faces as such.

I’m not sure I could recapture that ability, but when a few other mental faculties are more predictable, I’m game to try.


Preoccupation & CRPS-RAD

Last week, I was busy capturing files from FaceBook to save for a new website, It’s very much in development, so please let us know what you think.

It will soon be at but that’s another story.

This is the real-world launch of a FaceBook group that became sufficiently important and popular that it had to get off those godawful training wheels and get a real site. It will shortly have the research and translations into plain English, the discussions and threads, and the ongoing evolution of prevention and management, of CRPS and its comorbidities that the FaceBook page has — and, I hope, far more.

Now if only FaceBook were easier to work with. HAH.


New info on HIV in the central nervous system

My first nursing job was on an HIV/AIDS unti in 1991. I seem to remember learning, in the early ’90s, that we knew that co-infection with different HIV strains meant the person would get sicker quicker and be harder to treat (but trying to get HIV positive people to use condoms etc. with other HIV positive people was practically impossible in those days), and that people with these co-infections had much higher rates of dementia and a more aggressive disease generally.

This study — finally, and despite the facile title — gets more specific about what happens with HIV in the CSF (cerebrospinal fluid):

“Distinct AIDS viruses found in cerebrospinal fluid of people with HIV dementia”

By and large it’s excellent work: the info on HIV in the macrophage is intriguing, as is the implied interplay between the seroactive HIV and the CSF-inhabiting HIV.

The implied determination to get more people on the horrifically aggressive HAART pharmaceutical regime is disappointing, for 2 important logical reasons:

1. This intensive regime, itself, has powerful and often irreversible effects on the following: mitochondrial survival, bone mineralization, memory & cognition, and digestion & absorption. That means teeth crumble and bones turn chalky, nutrition in food becomes unavailable so it’s harder to maintain, and most of all, those of you who’ve read my work on mitochondria and on iatrogenic brain damage know how horrifying I find it to cavalierly trash those vital systems, most notably in the absence of any real efforts to support them in the face of iatrogenic — let alone pathologic — assaults.

2. The lack of any indication that the HAART drugs are any better at crossing the meninges (the covering over your spine & brain that forms the “blood-brain barrier”) after this study, than they were before this study. That’s an oversight that invokes a sardonic laugh. Heaven forbid the provider should actually pay attention to the patient and start the meds when needed, rather than assaulting the system maybe years before it’s necessary in the hope of staying one month ahead of one strain’s breakout. Bad math, you see?

It would be good to move away from the meme that drugs are the best, first, last, and finest answer. They’re one part of it and they’re easy to monitor, but we have to get a lot better at much more basic human care.

Good science. Stupid clinical take-away. But good science.


Links between racial discrimination, stress and health

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.

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.


Full disclosure/reality check

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.


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

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

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.


Fundamental neurotransmission is not that simple

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. 

Good medicine

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.