Life, CRPS & Everything – Page 34 – Living constructively, adapting, and outwitting the odds

Reverse culture shock, transcontinental style

Isy / May 12, 2011 / humor, loved ones, moving/traveling, perspective

Dear Reader … I’m a Yank. It’s true. I may have sparkly blonde hair, find it easy to talk to strangers, and not assume that anyone who smiles at me has an agenda, but that’s because I’ve been living in Central Coast California for 1/3 of my life.

Here in California, when you tell an acquaintance that they’re particularly clever or sweet, they grin pinkly and do a little riff on, “aw shucks, stop it again, quit it some more,” and like you the better for it. In New England, they’re liable to lift their chins — apparently avoiding a slobbery little dog — and take it as their due … while wondering what your agenda is, and bracing to resist it.

I know this because, after living in each place for a few years and watching the expressions and asking why, I found myself doing these exact same things. (I’m not immune, but I try to be aware.)

I’m also planning to go between the mid-Atlantic seaboard and the Northeast, which I’ve done before, and that has a charming set of subtle cultural potholes of its own.

For instance, if you call a stranger “ma’am” or “sir” in Alexandria, they figure you have nice manners and relax a little.

If you do that in New York, they raise their chins (ever so slightly) and figure you’ve taken a lower peg than themselves in the pecking order; then they’re either magnanimous or obstructive, but usually magnanimous.

If you do that in Massachusetts, they look around in a flustered manner and can’t quite figure out if you’re making fun of them or are putting them on a pedestal they aren’t sure they should occupy. … Which is in interesting contrast to the reaction to compliments.

Mind you, those who know me well have it figured out: compliments are taken pleasantly and “ma’am/sir” lightens the mood. So I’m not worried.

But I am glad that California has the cultural weight that it does, because — as I learned long ago — saying in an explanatory tone, “I’m from California,” smooths out any number of cultural faux pas. And there are sooo many pas to faux up.

How moving

Isy / May 8, 2011 / moving/traveling, perspective, self-care, what works

I’m working on clearing out all the needless stuff from my boat. This includes unfinished projects, equipment for work I can no longer do, things I’ve kept only because they’re too cute to get rid of, and so on. It’s been sufficiently, um, absorbing that I have neglected the blogs, but I’m playing catch-up online as I take an hour or two this morning to step back and breathe.

One realization that has helped me tremendously is the insight that NOTHING IS WASTED. I realized this when I held up a shirt that I had worn for a sweaty project: it was too smelly to use as a rag, but I couldn’t bring myself to wash it (laundry costs), and I realized it ought to go in the bin.

In a century or three, it will make very nice dirt for something to grow in. And isn’t it possible, I found myself thinking, that holding relentlessly to individual human scales of usefulness and time is a little … well, ethnocentric isn’t even the word. Speciecentric? … We are, after all, part of a greater reality which none of us will see the end of.

This expands on an idea I had long ago: that I don’t have to hold everything inside my skin. I was meditating to escape pain one day, and it followed me in, the jerk. So I took the idea that I’m just one drop in the ocean of humanity, and as my sense of awareness grew and expanded, the pain did not — it dissipated, being spread so wide over the whole world, and went away.

It was waiting for me when I got back, of course, but for one thing there was less of it; for another, the break did me a lot of good.

So I’m working on expanding my awareness. It makes it easier to detach from Things — objects whose main purpose is to take up space, use up mental energy, and carry some emotional trigger that, in fact, I probably don’t need. Life is quite emotional enough without the needless triggers, thanks.

Words, words, and words, with a poetry chaser

Isy / April 26, 2011 / humor, perspective, poetry, satire, tasty words

I have logical and philosophical objections to certain words used to describe me or what I do. I don’t expect anyone to change the way they speak, but feel free to entertain yourself by mulling two ideas and reading one egregious rhyme (think Lewis Carroll meets either Timothy Leary or Tom Lehrer, I’m not sure which.)

Word 1: Disabled

Hah! I am extremely able, thank yeeew. With both hands behind my back and my head held under water, I am still able. I’m able to add 2 and 2, for instance, or quote that wonderful bit from Twelfth Night that starts, “I’d build me a willow cabin at your gate, and wait upon my soul within the house …” Mind you, if you’re holding me underwater, it would be hard to check that, but I can still do it, I assure you.

I am handicapped. Like a runty little horse that has to have 30 pounds of lead stuffed into its saddle before it gets into the race. Like a golfer who’s being scored by a drunk with a broken calculator. I have exactly the same tasks to accomplish as anyone else in the race or on the course, but I have some added burdens that make it rather harder to succeed.

Word 2: Recovery

Why should I want to re-cover? Of all the covers that have been ripped off, I can’t say I think all that many need to go back on. I love all this fresh air. I love the lack of artifice. I love the inward freedom of having so much stuffing removed.

I don’t need recovering. Appropriate padding, yes; portable cushions, yes please, by all means. But upholstery is just one big refuge for dust mites and dander, metaphorical and otherwise.

I aim to heal. Healing from any profound physical or mental insult (and CRPS is certainly both!) does not mean going back to what or who or how I was before, it means finding a new way forward. There is no way back, and if there were, I have no reason (given how things played out) to think that returning there would be good for my health!

No, it’s forward for me: man the lifeboats, or woman them of course, but I’ll head for new horizons rather than try to wade back through the hideous swamp I sometimes think I’m climbing out of.

The Rhyme: “Re-cover and Heel — an overstretched metaphor”

Before you read further, let it be clearly understood that I love dogs, I have always loved dogs, and I’m old enough to use the word “bitch” in its traditional sense of female dog. In this case, an upholstered one…

The brocade bitch took a turn for the worse
and bit off the toe of a shoe.
The shoe kicked back with a bitter laugh
And said, “That the worst you can do?”

Upholstery torn, the bitch barked out,
“You’re badly in need of a nurse!”
The shoe stomped off and hollered back,
“You’ll soon be in need of a hearse!”

So the bitch went home to patch things up
While the shoe sought places new.
She’s jacquard now, otherwise fine;
He’s Prada, Gucci, and Diesel too.

Isy / April 26, 2011 / Uncategorized

I have logical and philosophical objections to certain words used to describe me or what I do. I don’t expect anyone to change the way they speak, but I do sweetly invite you to be aware of the way you think about these things that, I hope, affect your own life as little as possible.

Disabled.

Hah! I am extremely able. With both hands behind my back and my head held under water, I am still able. I am able to add 2 and 2, for instance, or quote that wonderful bit from Twelfth Night that starts, “I’d build me a willow cabin at your gate, and wait upon my soul within the house …” Mind you, if you’re holding me underwater, it would be hard to check that, but I can do it, I assure you.

I am _handicapped_. Like a runty little horse that has to have 10 pounds of lead stuffed into its saddle before it gets into that race. Like a golfer who’s in a game judged by a dyslexic with a nonfunctional calculator. I have exactly the same tasks to accomplish as anyone else in the race or on the course, but I have some additional burdens that make it quite a bit harder to succeed.

Recovery.

Why should I want to recover? Of all the covers that have been ripped off, I can’t say I think all that many need to go back on. I love all this fresh air. I love the lack of artifice. I love the inward freedom of having so much stuffing removed. I don’t need recovering. Appropriate padding, yes; portable cushions, by all means. But upholstery is just one big refuge for metaphorical dust mites and dander.

I aim to _heal._ Healing from any profound physical or mental insult (and CRPS is certainly both!) does not mean going back to what or who or how I was before, it means finding a new way forward. There is no way back, and if there were, I have no reason (given how things played out) to think that returning there would be good for my health! No, it’s forward for me: man the lifeboats, or woman them of course, but I’ll head for new horizons rather than wade back through the hideous swamp I sometimes think I’m climbing out of.

Isy / April 26, 2011 / Uncategorized

Disabled.

Recovery.

Radiant

Isy / April 8, 2011 / radiation, self-care, what works

We got the first rain since the reactors melted down in Japan. Weather systems being what they are — global, persistent, and efficient vectors — I took that rather seriously: scrubbed the deck to reduce absorption capacity, reconstructed the cockpit cover to keep the rain off, shoved fuel and spare cushions into the hard storage area, cleaned up belowdecks so I could stand being indoors for a couple days. Also stocked up on miso and tasty seaweed treats, to protect my thyroid — damn, they’re good.

In the absence of a Geiger counter… One of the really fun things about radiation is that — like fiberglass dust — we have no good way of assessing our exposure until it’s much too late to change it. As a nurse and as a DIY boat-owner, I figure it’s reasonable to protect myself as best I can, then hope for the best.

Tech note on seaweed/thyroid remark: the natural iodine in seaweed and miso loads up your thyroid gland’s iodine receptors. This leaves no room for radioactive iodine — carried in rainwater, for instance — to glom onto you. It’s exactly the same mechanism as the benign iodine in radiation pills. The dosage is more precise with the pills, but the taste of the seaweed treats is rather better.

Out of the foggy night: Overmedication and abandonment issues

Isy / March 28, 2011 / brainiac, CRPS knock-on effects, neurotransmitters, realpolitik, tasty words

I was overmedicated on mixed psychoactives (in plain English, my doctors had me on too many pills for CRPS) and, at the beginning of February, I ditched most of them. The following weeks were pretty hideous in an interesting way, as my brain’s natural chemistry struggled with the messy extrication and departure of the pharmaceuticals.

It feels like washing my dirty laundry to say this, but I suspect I’m being too finicky: LOTS of people get overmedicated by well-meaning medicos who don’t talk to each other.

The pills I stopped were SSRIs and SNRIs. (I can’t remember which was which.) The upside to this class of medication is that it specifically relieves nerve pain, in addition to helping lift depression. (I wrote an article, buried in my archives, about the tiny handful of neurotransmitters, and how each one has many jobs. Serotonin, for instance, helps digest protein in the gut; dopamine mediates decisions. I’ll dig it out and post it on the Biowizardry blog.)

When you have CRPS and you’re overmedicated on neurotransmitter Reuptake Inhibitors (of whatever flavor), your brain is in the toilet and there’s no way to tell which mental blurch is due to drugs and which one is CRPS. I couldn’t always tell how well I was thinking, though I kept trying anyway. Perceiving how I felt underneath it all was like trying to determine the shape of a bomb while it’s still in the box. I was usually clear about what I remembered and what I wasn’t sure about… but just try getting anyone to believe you when they already know that your brain is not firing on all four cylinders.

There’s a lot of grey area in the grey matter, when you’re overmedicated and have CRPS.

I’m not sure how much more crap there is to clear out, but I know I’m a lot clearer about what’s going on right now. I look back on the past two years with some dismay, as I try to rebuild the relationships I dented, and (most painfully) try to understand why those who should have known better had simply abandoned me to that foggy night.

[photo credit http://www.flickr.com/photos/jfraissi/2165047274/]

But anyway.

I am remarkably clear, now, about what I remember and what is nothing but a sudden hole in my mind. I’m clear about whether I can think right now or not. I’m able to feel the brain crank up and crank down, so I can communicate to others, “I can do this!” or “Gotta stop now!” And, for the first time in years, I can get something done on some sort of schedule. Not a consistent or reliable schedule, not to any sort of clock, but just to know that I CAN do something is quite a step. I’ll take it and be thankful!

I still have CRPS. My medication is still problematic. I still have sudden, random, Swiss-cheese-like holes in my memory and cognition. BUT — and it’s a big but! — there is no grey area in my grey matter any more. I know if I know, and I know if I don’t know.

And that’s information I intend to use.

A gift that keeps on giving

Isy / March 20, 2011 / loved ones, perspective

My 37th birthday happened at a fraught time (no, really?) but I planned ahead: 4 friends and I, tiny Brazilian restaurant, pitcher of mojitos.

No crowds. No fuss. No presents, please.

That was important. I was preparing to move but didn’t know where yet.

So Joyce and Graham, the techies, got me an early iPod Mini. Laura, an artist, got me an extraordinary shawl. Vince, a true gentleman, did exactly as I had asked and felt terrible about it.

My 37th year had been full of character-building surprises. I had decided not to reprise turning 36 because the subsequent year had been so rotten, but I wasn’t happy about getting older. Even before the drinks were poured, I was bitching about my age.

Joyce and Graham, who were just peeking over the shelf of 30, said, “There there, it’s good to be seasoned, age brings wisdom,” and so on.

Laura, a couple months older than I and the most sensible artist I’ve ever met, said, “Yeah. It sucks.”

Vince, who was barely old enough to rent a car in his own name (although he was bright enough to write the certification tests for Borland C++), with a self-deprecating shrug and a charming little pinkness, said, “I don’t know, you always seem to me like you have a mental age of 17.”

I remembered being 17 — happy, busy, fit, secure in my slice of the world, delighted with most things and amused by the rest, my adult mind just blooming, and absolutely no idea how cute I was.

Once I could reef in my grin enough to use my mouth for speaking, I said, “You just gave me the best present of all.”

Sadly, he didn’t exactly believe me.

The iPod Mini was superseded, then stolen. The beautiful shawl disappeared, along with everything else, when the US Mail failed to deliver what I mailed in my move.

But every year, when yet another birthday looms, I remember Vince twitching his shoulders and saying sweetly, “I don’t know…”

And, really, the count of years doesn’t seem quite so bad.

Radiation and sudomotor silliness

Isy / March 17, 2011 / CRPS knock-on effects, radiation, what works

My hands and feet have been getting very swollen. My hands puff up on the phone or computer especially; with a bit of training, I bet I could learn to feel just how many rads are coming off of which hotspot, just by the icky feeling and instant puffiness. (Puffiness is driven by a neuro-vaso-muscular response called the “sudomotor response.” Also drives sweating.)

I left the computer off & unplugged for 24 hours. Left the phone at home while I was out today. Hands: hardly puffy at all, until now — they’re inflating as I touchscreen this entry. Mood: ooooh, grouchygrouchygrouchy. And such a headache…!

Think I’d better back off on the radiation. I do not need that kind of physical or mental alteration. I do need the tech, but I can manage it better.

I knew my hands inflated near my devices, but the confirmation that they don’t inflate normally was a relief.

Because things change anyway

Isy / March 12, 2011 / Dept. of Blith. Obv., perspective, self-care, what works

As I rebuilt my posture this morning per usual, I remembered a conversation I had in my 30’s with my Shaolin teacher. I was sorting out knee issues, and after a week of working on something I hadn’t thought much about in several decades, I said in a ‘pity me’ voice, “I’m relearning how to walk.”

He shrugged, too distracted by the picayune-ness to notice the self-pity: “I’m always relearning how to walk.”

That was one of those moments that made me go away and think all the way up the thought, all the way down the thought, and all the way across it, too. (A good Sifu/sensei can do this to you, sometimes in even fewer words than that. Ted Mancuso in Santa Cruz; look him up.)

So here’s today’s update from the Department of the Blitheringly Obvious, which does a brisk trade because we are so good at not connecting the dots … Or I am, anyway:

1. Time moves.
2. We go with it.
Therefore,
3. Things change.
Therefore,
4. Our bodies alter, and take us with ’em.
Therefore,
5. We are always relearning, whether we know it or not.

Therefore…

I might as well pay a bit of attention and relearn better, instead of slipping off into relearning unconsciously and making things worse.

My posture is definitely improving. Core strength is damn good. Pants fit and my low back is MUCH better.

I haven’t worried much about my knees in ages. … Hunh.