Isy – Page 29 – Life, CRPS & Everything

Imp-possible

Isy / June 11, 2012 / humor, imp-possible, perspective, tasty words

Healing this disease is supposed to be impossible. In my experience, the word “impossible” is relative.

Some things simply cannot be done: scaling Everest with flippers on your feet, for instance. Scaling Everest in a hot little bikini might be do-able, for all I know, although it hasn’t been done yet. I’ve met one or two people who seemed well suited (so to speak) for the job.

Many things that are widely considered impossible are simply heinously difficult, requiring extra time, diligence, and determination. They may be practically impossible, because most people are not willing to try that hard and can’t imagine that anyone else would be. I’ve met a few of those, too.

When facing the practically impossible, it helps to have a certain blithely F-U attitude, to be willing to flip a bird or two at the forces – or people – that seem to hold me from it. Not to hold resentment, but to detach from their limitations and clarify that they have no hold over me.

It helps to realize that those who tell me it’s impossible are really speaking for themselves, but that doesn’t mean they get to speak for me.

In short, it helps to have that inner steel spring that winds me up beyond any comfort zone and propels my willful butt over the heads of everyone who has failed before they began, and lets me look at them – not with contempt, because that has no place at this height – but with a cheerful bouyancy that holds the possibility that maybe there’s room for them up here, too.

This attitude is springy without being snappish, free-spirited without wasting time in rebellion, wild and fresh with only its own inner guidance for discipline.

It’s impish, in other words.

And this gives us a word we can use to describe things like scaling Everest in a skimpy swimsuit, or inviting cannibals to a linen-dressed tea, or curing CRPS:

Imp-possible.

I rather like that.

Curing CRPS is imp-possible. Excellent. Bring on the bikinis.

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

Isy / May 24, 2012October 10, 2014 / CRPS knock-on effects, nutrition, what works

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 1

Part 2 (with demo of animated light show 🙂 )

Part 3

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.

Mendo Acid Trip

Isy / May 23, 2012 / humor, loved ones, nature

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.

Pride of pwnership

Isy / May 22, 2012 / adaptation, loved ones, perspective

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.

Tern to the present

Isy / May 2, 2012 / adaptation, loved ones, mortality, nature, perspective, reiki/meditation, what works

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.

Getting it right

Isy / April 19, 2012January 8, 2014 / adaptation, critical thinking, Dept. of Blith. Obv., perspective, reiki/meditation, sheeple, what works

H’mm… Struggling with the recurring message from the world around me that I can’t do this, I can’t cure this case of cold chronic CRPS. It’s twinned with the message that, whatever I’m doing, it’s wrong.

I’m not interested in whining, because, as my CRPS cohorts know, this nonsense is par for the course… but every now and then, it’s good to step back and do a reality check.Let’s take a good look at this thinking:

On the conventional medicine side, I walked into a new doctor’s office with my tabulated timeline of years of a complex case, pictures showing the evolution of the disease in this body, and documentation about what works and what doesn’t. The response: “You spend way too much time thinking about this!”

Don’t waste time trying to find any upside to that remark. It surprised me especially because most of my docs (the best in the biz) loved my documentation. Now I know that the really good doctors love it, and the ones who don’t love it are either one-trick ponies or second-rate. This one was a one-trick pony, and once he’d done his job, I was gone.

Let’s back up and pretend this guy asked,

“Wow, that’s a boatload of well-crafted, thoughtful documentation. Why did you go to so much apparent effort?”

I’d say, “I was a nurse so the concepts are easy, and I was a tech writer so the structure is even easier. This is a cakewalk for me. If I CAN’T document what’s going on, check for a pulse!

“Moreover,” I’d go on, assuming the doctor cared about my well-being, “tracking this stuff frees up my attention by letting me plonk it down in black & white and then put it out of my head. That leaves the rest of my time free for meditating, friends, bathing, housework, and so on.

“Besides,” I’d add, if the doctor looked like one who could take a joke, “most docs find this case hopelessly confusing, and I don’t need you wasting my time by asking the same questions 3 times and still getting it all wrong in the end, just like the one other doc who refused to look at this!” Ha ha.

Clinical note: Seriously, physicians, that’s how to handle an expert patient: Ask, then listen. Saves time.

The alt-health folks are liable to tell me, first, that I’m sick because I think the wrong thoughts; then, if they ask about my mental habits, it’s obviously because I eat toxic foods; if they want to get straightened out about that, “it’s clear, dear, that you’re too attached to this disease” and there’s nothing anyone can do to help. (Direct quote.)

My fellow CRPSers are thinking exactly the same things as me right now.

Besides the sheer cruelty of that response, the fact is that spontaneous total remission from CRPS after the first 3 years is even rarer than spontaneous remission in cancer or AIDS. I’ve heard of it happening once as late as 7 years; I’ve had it for roughly 10; average survival is 30 years after onset. If any of you has more optimistic data, I’d love to see it!

Here are some things I’ve learned about how what you think and what you do REALLY affect the course of your CRPS:

Those who stick exclusively with the conventional model and submit to their doctors without question, especially when they have noxious drug reactions (as I do), tend to suffer much and die young.
That’s what happens when you’re a passive patient with a disease that few doctors understand.
Those who become well-informed and educate their doctors, have better results and do considerably better for much longer.
That’s what happens when you open your eyes and take initiative regarding a very rare and complex disease.
Those who research and implement changes to diet and lifestyle most vigorously, have the best results from their care and use a lot less medication with much better results, higher function, and lower disability.
That’s what happens when you shoulder real responsibility for what you do and how it affects your life.
Those who are active in the online communities, seeking support and providing support to others and sharing information, tend to beat the odds.
That’s what happens when you constructively engage with your community.

I’m looking for something I’m not doing yet. I will figure it out, hunt it down and I will do it.

CRPS is an incredibly hard disease, in every conceivable way. Where there is any spontaneous remission at all, there is something to work with. I just haven’t figured out what yet.

Since I still have CRPS, I find those recurring messages a little intimidating. I don’t yet have hard data to throw back against the key message.

I can see that, when others say I’m doing things wrong, the statements tend to be presumptuous and ill-informed — but the fact is, I still haven’t cured my own case of CRPS …YET.

Balance

Isy / April 18, 2012 / adaptation, realpolitik, what works

I recently had a sequence of conversations that showed me where I really stand.

In one, I answered a series of health questions in a linear, rational, consensus-reality style: this did that, the other happened, and this twisted disease all makes sense to the crowd outside Wendy’s.

In another, I discussed the comparative neurogenetics of mice and men like a hardcore science geek, all Cartesian assumptions and classical physics.

Then there was Firefly and Terry Pratchett, fine examples of satire that manage to be curiously strengthening rather than cutting anyone down.

Then a writer friend asked about the 2012 thing (maybe I should capitalize that: The 2012 Thing) and that led to a little discourse on Mayan numerics and calendar theory, galactic astronomy, and the quantum physics behind astrology.

For one thing, I’ve found that reality is a lot weirder than I was ever told. For another, I rather like being what I am: a translator. I can explain neonatal cardiology to a soccer mom, Hunab Ku to a lawyer, international politics to a meth head.

So where do I stand? It just dawned on me that I stand on understanding. (Look at that again, because I just did: stand…on…under…standing. I love it when patterns emerge, even if they’re Moebius strips.) That stance often puts me between two extremes, bridging them with the clarity of the best words I can find at the time.

I don’t need a creed of my own beyond “do no intentional harm”, “we’re all part of something larger (details vary)”, and the like. This adogmatic flexibility is where my balance is. That’s pretty cool. Not normal — normal doesn’t seem to work for me. But that’s fine. This does.

EM-hmmmm

Isy / April 18, 2012 / CRPS knock-on effects, moving/traveling, self-care, what works

Last year, I could tell exactly when the fallout from Japan got here, because my hands and arms swelled up the moment I stepped outside. I could tell which gloves had been left in the rain, because they made my fingertips go numb when I touched them.

Who needs Geiger counters when you’ve got cold chronic CRPS?

So I took off for the summer & went East until September, when the air and sunlight had calmed down quite a bit. However, the entire SF Bay is simply carpeted with wifi, radio, EM, and a whole lot of other stuff in the band that’s so noxious to CRPS — at least, in me … And in almost everyone I know who has CRPS who has taken the time to reflect on what triggers swelling, autonomia and pain.

I had staggering improvements from a trip I got to a hot springs, where I did hot & cold plunges. In all my life, it was the most amazingly recuperative experience that didn’t involve persuading someone else to work on me. That low emotional overhead has a certain appeal, in these dysregulated times. But I do look forward to finding lots of good company along the way.

I’m clearing the boat for sale then taking off on an extended tour of hot springs. I have no idea where it’ll take me, but what a trip! I expect you’ll read quite a lot about van camping, because remember, I’m on Disability and that doesn’t leave much for hotels.

New glasses, renewed perspective

Isy / March 26, 2012 / adaptation, critical thinking, loved ones, perspective, self-care

I used to have remarkably acute vision (20/15, if you’re curious) and exceptional color perception to go with it. It used to make me happy just to look. Turning my sweet eagle’s eyes on a treetop and picking out each leaf really felt good. Noticing the individual speckles on a falcon overhead made my heart sing.

I liked to see.

That has been changing for some years; I remember when I could no longer see the star at the center of the sparkle in the night sky, for instance. With more pressing matters (food, rent, keeping CRPS under control) I’ve adapted and adapted and adapted to my worsening vision, using pattern-matching skills (another 5-star category in my old brain) to replace actual perception.

It is an excellent adaptation to use, leveraging a primitive part of the brain that is very hard to screw up. However, it does have its limits.

My housemate, the excellent R. (I avoid using personal names without permission), finally confessed that my driving scared him because he really thought I couldn’t see well enough to manage it safely. He worried even more when he wasn’t in the car. That made me think.

And then I scared myself today on the road, and decided that was the last time. I called the ocular shop and they squeezed me in at 4 o’clock on a Sunday.

My visual acuity had deteriorated from 20/15 to 20/80.

Some things should not be adapted to.

I’m now a member of the four-eyed fraternity.

I think my nose was red because I almost cried.

I wear my polycarbonate steel-rimmed cheaters as if they were portals into heaven, because they are. I spent an hour and a half simply strolling around, agog, with the whole world smacking me squarely in the eyeballs.

First thing I noticed is, everything has an edge. I had forgotten that; more precisely, I had taken it so much for granted when I could see, that I didn’t notice when it faded from view. It’s like the resolution on the world is turned up to infinity. (…It is, in case you’re wondering.)

The next humdinger was the warping effect. Looking through the lenses is hunky-dory, but it gets a bit weird at the very edges, and beyond the rims there is no correction at all — the world is a palid mess, off to the sides and around the bottom, right where my feet and hands are most of the time.

I twisted my head slowly around, expecting wa-wa noises and doppler effects to accompany the dizzying twist of light around the margins of my sight.

I stumbled until I figured out that my feet were just where I’d left them, and I’d have to treat them just the same as I did before the glasses.

I was sure the pavement was breathing.

I’ve never taken hallucinogens (apart from exhaustion, surgery and chronic pain). I have nothing against them, I just felt no need to. There might be a reason why: all it takes is a pair of new glasses and I’m nearly there.

I went down to the beach and saw two boys in red shirts. I was riveted. My ocular nerve itself was stained, the color was so intense. Did you know red is the color of healthy, living blood? Red so glorious and alive that it almost quivered was all over street signs, cars, carts — shirts.

When I noticed that, I noticed that all the colors were darker, richer, more alive. The dim shapes of the SF Peninsula across the Bay were purple, dark steel and deep amber. I had no idea. It was spectacular, in a tasteful and slightly intimidating palette.

Then the shapes and colors came together for me as I looked up at the sky. The clouds didn’t just drift stately by, they floated in a tender dance of radiant whites and silvers, caressing the air with fingertips trailing Chantilly lace and oxygen.

As I saw that, I realized that the movement of things had taken on new poetry. Palm trees shifted in the breeze with the distracted grace of mermaids playing with their hair. Every frond was alive and had a finger of wind wrapped around it. Who knew?

I walked until I could bear to focus on a path, could do head checks without headspins, and generally felt able to drive more safely. It was still a stunning trip home, and I got here just as the sun touched the top of the Marin Headlands and dropped out of sight, staining the sky with farewell colors. I said thanks to it, right out loud.

I’m told it will take another day to adapt, and by then I’ll know what my world will look like from now on. The hallucinatory wonder will probably be replaced by something I can talk about in public (“Didja see that? Looked like the Goodyear blimp!”) but, from my personal history as a visual junkie of ocular delight, this intense thrill of LOOKING will probably be mine again forever — or for as long as I keep my prescription up to date.

I’m pretty motivated. This cuts into my car-buying budget, but I do think it’s worth it. Being able to survive driving is not a bad idea at all.

Gluten exposure and recovery – Testing myself (silly me)

Isy / March 19, 2012 / food allergies, reiki/meditation, self-care, what works

Gluten: really is that bad

Yesterday, I walked past the bread display at Trader Joe’s three times, breathing deeply. It smelled good, but not as good as I remembered. That was odd.

As I left the store about ten minutes later, my face turned beet-red and puffed up, my brain went into a deep white fog, colors faded to pastels, and the pain left my arms and foot briefly to return, five minutes later, to every joint in my body.

I was in full neurological gluten reaction. From inhaling near a bread display!

I did that in the first place because I just could not believe I was that sensitive to something I’ve eaten – and really enjoyed – all my life until last summer.

I know there’s a difference between the kind of food sensitivity where, if you avoid that food most of the time, you can tolerate a little now and then with no trouble; it’s about keeping the contact down below a certain minimum. Then there are the sensitivities where, if you eat a bit on a regular basis, your body retains an ability to deal with it and you don’t get a reaction (vegetarians who go back to eating meat are familiar with this – it takes awhile for the body to readjust.) And then there are the sensitivities that amount to true allergies, where any contact causes a reaction and the reaction can get intense enough to create a crisis.

That was an intense reaction. I’m not interested in seeing how much more my face can inflate.

It’s true that I used to eat wheat regularly and experienced nothing as dramatic. Would it be less dramatic if I ate a little on a regular basis?

Considering how quickly my health was slipping while I was eating gluten, and the fact that I continue to get sicker but I appreciate that it’s at a slower rate, I don’t see any real point in making the experiment.

Moreover, the literature on gluten allergies does not support that. The science indicates that, if your body has trouble with that particular protein, then the further you can stay from it, the better off you are.

I called my acupuncturonaturohomeopath. He gave me a recipe for gluten exposure, which is mostly about buffering the heck out of the molecule. I cobbled together a gluten exposure kit from my talk with him and my nursing background.

Gluten Exposure Kit:

–          2 Alka Seltzer tablets,
–          4 Tums,
–          500 mg body-friendly Vitamin C (not more),
–          10-15 capsules of activated carbon, to soak up any toxins in the gut. (More for eating it by accident, but it can’t hurt. I think it cleared a few things up, in fact.)

Just add water! And plenty of it.

Keep it in snack-baggies in key places: glove compartment, purse, first aid kit, desk drawer.

I turned normal Isy color almost immediately and then had a great, rippling burp every 10 minutes for about half an hour – feeling considerably more human each time. A day later, I’m not quite up to where I was before exposing myself, but am LOTS better than I’d expect to be, without that treatment. A reaction like that usually puts me down & out for about three days. Drooling Barbie doll. It’s awful.

Why so little Vitamin C? Doesn’t your body just wash away the excess?

Actually, if you take in excess Vitamin C, your body washes away all of it that it can still get hold of. 500 mg seems to be the sweet spot of maximum absorption and minimum waste. I used to megadose it, but with a frail system, that’s intolerable. 500 mg lets me take in and use every bit of it. If I need more, I just take it 3 times a day instead of twice.

Meditation and Reiki: really is that good

Today, I had to test myself on the value of my mental disciplines. I’m not sure why I’m testing myself so much; I doubt myself, perhaps. There is something surreal about what this disease does to you; I suppose the occasional reality check makes sense.

I didn’t meditate last night or this morning. The emotional surges are quite noticeable, but I’m well aware that they are what they are, which is not me.

After my gluten experiment, I feel no need to push this farther.

I’m now perfectly convinced that my relentless internal work does keep the rudder in line, the engine tuned, the brake pads operational, etc. Basically, it keeps CRPS from taking over my brain.

Dammit. I wanted to be normal again. Though, to quote the fabulous Stockard Channing in Practical Magic, “Darling, when are you going to learn that being normal is not a virtue? It rather denotes a lack of ambition!”