Dr. Oz and Paula Abdul on RSD/CRPS-1

Paula Abdul has an unusual subtype of this unusual disease, and in her case, ice is excellent instead of deadly. Having labeled that huge caveat, here is some excellent, informative, very useful stuff to take away:

[The clip was removed from youtube. Here is the show on Dr. Oz’s page:
Part 2 (with demo of animated light show 🙂 )
Part 4 (which they evidently removed from the RSD segment… discusses highlights of the nutritional changes that turned her disease around]

She and Dr. Oz do a very good job of simply, honestly and clearly conveying the basic physical reality of RSD/CRPS-1. I found her presentation refreshingly honest, very sweet, and completely good.

Note her discussing how food and nutrition (especially drastic amounts of produce) is responsible for a “360-degree change” in her condition. She has found doctors that helped her figure that out; what I want is for those doctors to train all their cohorts!

The (usually passive; occasionally active) resistance of the mass of doctors to nutrition is appalling, but at this point it is the most valuable single strategy that’s available to the most people. The fact that it isn’t available to everyone is a horror which I look forward to seeing the end of: poverty and food insecurity are not good for anyone, and being disabled puts most of us into poverty… so we can’t get the kind of food we really need to manage this disabling condition!

My old commercial-grade blender took a dive off the boat. It’s probably making sushi in the middle of the Pacific Ocean by now.  I can’t wait to get another one and get back to making green shakes. The healthy oils and tons of produce are the best “brain-food” I’ve ever found. They keep the pain down to a manageable level and help me continue to be able to do things like, oh I don’t know, write more blog posts.

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Mendo Acid Trip

Language tends to reflect upbringing, or possibly genetics, or maybe both. Anyway, there is often a familial component. (I’ll let better-paid heads argue about why.)

Case in point — my older brother’s riff on my county’s name might have a familiar feel, although only he could possibly have come up with this imagery:

‘I can’t decide if ‘mendocino’ sounds like an antacid (“Mendocino, now in new cherry flavour…”), or a garment of Mexican origin (“and now just add a chunky brown leather belt to offset the vibrant shade of your mendocino…”), and indeed maybe are old chinos with violent coloured patchwork on them….

cropped from a photo by Midori

‘Why mendo-acid-vibrant coloured-cino?’

I had to read this through 3 times before I could keep my seat long enough to respond without falling off again.

The answer is far too prosaic to make a suitable reply, but frankly, that’s a tough act to follow…

So, why here?

Hills.
Trees.
Rocks.
Air.

Gives me whiplash to read this far.

Antacid-washed chinos might be more entertaining, but I had a deep need for a wooded granite ridge to park my frazzled bones upon, while preparing for the Healing Tour — whatever the heck that turns out to be.

My timing is good. Everything is bursting into bloom:

 Cherry-flavored patchwork chinos would look pretty good sprawled under that tree. Mind you, anything would, including that dusty ol’ truck.

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Pride of pwnership

I transferred my prescription to a new pharmacy today. When I was asked about existing conditions, I said, “CRPS – Complex Regional Pain Syndrome – and fibromyalgia.” My tone, I realized, was firm and proud.
At first, that freaked me out. Proud? To have CRPS? Just how far have I come to identify myself with this disease? 
It bothered me, but not as much as it should have. I put it on a back burner to mull for a bit.
I did some paperwork and watched a movie: Mulan, and I don’t think that’s irrelevant.
I realized that it’s not having CRPS and fibromyalgia that I’m proud of. It’s having CRPS and fibromyalgia, and still being alive – still hugely engaged – still moving to a new place, still sorting out my paperwork, still finding a new adventure, and still organizing that adventure even as it unfolds. 
I identify with whatever it took to develop the nerve, courage, and modicum of grace that got me this far. I identify with what it took to discover those who kept me alive, and made that life worth living. I identify with having gotten to the point where the things that I think about, much of the time, have nothing to do with pain, frailty, and other losses. I have this ridiculously awful disease, but that’s not where my life is. 
I have CRPS, but the verb “to have” has a number of meanings: to possess, to be in relationship to, to be required, to have a duty or need, and so on. If you’ve ever done any translation, you know what a headache the verb “to have” can be. 
In this case, it might just mean that I own the disease, in the way that hackers mean when they spell “own” with a P: pwn. To pwn something (a device, troublesome software, the CIA mainframe) is to figure out how to dominate it, because you know exactly how to make it play ball — whether that’s legal, approved, or otherwise. 
As it happens, that’s pretty much what I intend to do with CRPS.
I’m okay with being proud about that.
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Tern to the present

This is the third major purge of my possessions in 7 years. 

The first time, I decided that anything that I was keeping for sentimental value had to trigger only good feelings; I’d keep nothing that made me unhappy.

The second time, I moved onto the boat, so everything had to have at least two uses.

Now, I’m eliminating everything that isn’t easy to handle, as well as being useful and pleasing.

That meme is extending into the realm of perception. Images and events that used to trigger emotional cascades, because of memories and associations, are finally losing their sickening zap. Associations fall away, and images and events stand out  in simple splendor as just what they are: unlayered, transient, colorful, done.

For instance, I used to hate terns, because their cry sounds exactly like a drowning cat. I blame their awful caw for my not being aware that my cat was in jeopardy when he died. For a couple years now, I’ve gotten snarly at tern-time, when they come here to breed. But, with this shift in my perspective, a tern is just a tern. My excellent companion was still an excellent companion — and, obviously, a kindred spirit.

A tern is not about the past or the future. It’s here now. It’s just that, at this moment, one is floating past with its strange sharp wings twinkling; then it hovers and wiggles for a moment; twists, plunges, spears the water; bobs up again, looking smug, with a little fish in its mouth; takes off and disappears.

Usually, there is no fish. But right now, there goes a pleased tern, enjoying the moment.

It’s just a tern, and it’s doing tern things in a ternish kind of way. Tomorrow it will do tern stuff in a slightly different, but still ternish way. Doesn’t matter. It’s just a tern — nothing more nor less.

There is no furry friend dying alone.

There is just a bird.

Gorgeous photo: Geert Wilders at http://www.freerepublic.com/focus/f-chat/2426290/posts

And I want credit for resisting the obvious urge to make a crack about taking a tern for the worse.

Oops…

Anyway.

I stumbled across a quote that seemed shiningly appropriate:

“To live here and now, you must train yourself: in the seen there will be just the seen, in the heard just the heard, in the sensed just the sensed, in the thought just the thought. That is the end of  sorrow.” – Gautama Buddha

I don’t know about the end of sorrow, but it’s true that it is far easier to manage my moods, notice my body’s signals, and do what I need to do, when I keep things in this charmingly simple, deceptively rigorous perspective.

It’s rigorous because it goes against all my socialization about the importance of hair-trigger reactions and emotional responses: Am I an ice-queen? Don’t I care about things? Aren’t I human? What’s wrong with me?

I’ve gotten all of those remarks in my time, when I strove for calm in former years — especially from mere acquaintances and random strangers, which always shocked me. How I, and those around me, survived my 13th-23rd years is unimaginable at this distance of time and self-certainty, but falling into the reactivity trap was one good way not to get verbally assaulted.

One advantage of being plumply middle-aged is that, for one thing, people watch you less; for another, a degree of equanimity seems to be less … annoying.


Exqueeze me?!?

I’ve had it up to here with emotional reactions. CRPS is a roller coaster par excellence, for emotional reactions. I’m quite done, thank you, and I’d like to get off now.

Actually, I think I just did.

And now, a tern is just a tern. For better … or worse.

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