Humbling invitation

I’ve been invited to ride in the funeral cortége of the man I helped code last week. It’s a semi-public occasion, as he was a semi-public figure (which is why I’ve been cagey about details), so “yes” is not as simple as it sounds.

I seek public exposure the way other people seek whooping cough — every now and then, it hits, but fortunately, it’s rare, and generally causes no lasting damage.

I was silly enough to mention that I have a sub-par central nervous system to the extremely kindly person arranging the event — who was also my CPR partner at about this time last week. He nearly withdrew the offer on the spot, possibly raw over the possibility of another medical event.

It’s a bit strange to have someone else worrying more about my body’s reactions than I do. Kind of refreshing… but definitely strange. This disability has been so invisible for so long — a fact assisted by the sturdy stoicism so many of us live by — that I simply have no idea how to handle someone else’s concern.

To mitigate any need for worry on anyone’s part, I’m preparing for CNS stress on Monday. Here’s how…

I have found, absolutely consistently, that the key to preparing for extra events is all about berries and vegetables. All the vitamins in the world — which I think I’ve tried — can’t do quite as much good as half a bucketful of organic greens and half a basket of good berries per day. I just had a big farmer’s-market-fresh salad; I’ll have kale for dinner, and there’s steamed summer squash awaiting the next moment when I can handle a few bites. Wild blackberries are set for breakfast.

I’ll boost my multivitamins and antioxidants only slightly, since I already take about as much as my body can absorb. I’ll keep lemon balm (for pain flares and dysautonomia) and yerba santa (for nausea and nerviness) in my pockets.

I’ll do extra brain-training, which I’ll talk more about one day, but it’s basically about learning how to calm the central nervous system by sheer will. And t’ai chi. Lots of t’ai chi. Mental practice, if not much physical. I see a couple of Epsom baths in my future, stocking my system up on magnesium and sulphur to buffer this body a bit.

Funerals are for the living, though we think so hard about what the deceased would appreciate. I’m not sure why that works, but it does.

The peacocks left us a glorious side-feather.

peacock_sidefeather

It might come with me. It might not come back. I’ll see what it feels like the deceased would appreciate.

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T’ai chi and emotional pain

When I’m out in the world, my reflex is to shove grief into a bundle and push it aside, and try to act as if I don’t feel it.

It’s always surprising how much energy that actually takes. When I’m doing anything else that takes much effort, it’s nearly impossible. It makes me forgetful and clumsy, just like a pain flare.

When I was at t’ai chi class yesterday, shoving and pushing one way with my mind while I was shoving and pushing another way with my body was so exhausting that I was wringing wet with sweat. Then I remembered something I’d tried briefly before, and decided to try it for the rest of the class.

I mentally drew the grief into my whole body. The grief turned to sadness and stretched out into every muscle fiber, every moving part. And I did t’ai chi with a body that was swarming with sadness.

It was, above all, peaceful.

I certainly wasn’t as tired. The sweat vanished as if by magic. I don’t even remember it drying on me.

The important thing is, I wasn’t expressing sadness in any deliberate way. I didn’t move more slowly, or try for any effect. I moved more deliberately and with better focus, because I was integrated. My body was filled with sadness, and I moved that body through the t’ai chi form.

The point of t’ai chi is to clear things up, straighten out what needs straightening, and separate muddled body parts and muddled energies into their proper alignments. Therefore, the sadness got a heck of a massage, and by the end of class, it was like it had been processed into something more wholesome. There wasn’t nearly as much sadness, as such. There was a lot more peace. There was a sense of strength I can’t put a name to.

I must add, as a footnote, that it’s been a long time since my feelings were capable of unshadowed joy. I have learned to cultivate a certain shallowness of mind at times, so I can be insulated from the deeps and be simply happy in the moment.

Therefore, when I say that I was happy as I left class, understand that it was a deep happiness. The shadows were very much a part of it, but that was fine. They were in the right place.

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Just like Hemingway (no, really)

I read, years ago, something from Ernest Hemingway about his process. (I can’t wait to see which of my literary friends will be able to tell me where he wrote this.)

He took off, for months or years at a time, to live. In his terms, that meant running with the bulls, or falling down mountains, or shaking his sweat off into the sea. He had what most of us would call adventures, big hairy spans of eventfulness, in which he’d get immersed past the reach of words, and soak up sheer experience.
boat-bittenbycrocodile
He said, mindfully, that it took weeks or months to regain his command of his wordcraft, but if he didn’t take the time out from writing in order to take time to live, there would be nothing to write about.

Needless to say, I’m envious that he had the choice. Lucky swine.

It’s safe to say that I’ve been living — if not in Hemingway’s terms, then certainly in my own — occasionally even past the reach of words, or at least past the desire to use them.
me-fingers-2up
Some experiences are beyond words, but not beyond gestures.

Some things are a lot more entertaining in retrospect, and if it takes a few weeks or a few months to be able to write about them in the way I want to, well, the time will pass anyway.

Meanwhile, we are working simultaneously on getting me back my brain and getting darling J back his heart. Both are turning out to be a bit trickier than we’d thought.
sketc h of excessively happy doctor running with a hypodermic needle

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I’m sorry, Dave. I’m afraid I can’t do that.

Interesting metaphor for this, um, ratfink disease.

Interviewer:
HAL, you have an enormous responsibility on this mission, in many ways perhaps the greatest responsibility of any single mission element. You’re the brain and central nervous system of the ship…

Poole:
Unfortunately, that sounds a little like famous last words.

I had the pleasure of explaining CRPS to a doctor who isn’t mine, who really wanted to understand. After listening to me for 15 minutes nonstop, he summarized it perfectly.

He said, “It’s a bit like HAL, in 2001.”

I asked if I could borrow that.

I’ve culled movie quotes off the web and my CRPS compatriots can say how breathtakingly parallel they are. In no particular order:

Dr. Frank Poole:
… That would pretty well wrap it up as far as HAL was concerned, wouldn’t it?
Dave Bowman:
Well, we’d be in very serious trouble.
Frank Poole:
We would, wouldn’t we. What the hell could we do?
Dave Bowman: [sigh]
Well, we wouldn’t have too many alternatives.
Frank Poole:
I don’t think we’d have any alternatives. There isn’t a single aspect of ship operations that isn’t under his control.

And that, ladies and gentlemen, is the central nervous system in a nutshell.

Dave Bowman:
All right, HAL; I’ll go in through the emergency airlock.
HAL:
Without your space helmet, Dave, you’re going to find that rather difficult.
Dave Bowman:
HAL, I won’t argue with you any more! Open the doors!
HAL:
Dave, this conversation can serve no purpose anymore. Goodbye.

We’ve all had that happen!

HAL:
Just what do you think you’re doing, Dave?

Um, trying to survive?

[Regarding an apparent problem which HAL itself falsified]
HAL:
It can only be attributable to human error.

Swine. YOU did this, CRPS!

HAL:
I know I’ve made some very poor decisions recently, but I can give you my complete assurance that my work will be back to normal. I’ve still got the greatest enthusiasm and confidence in the mission. And I want to help you.

This reminds me of the “you have CRPS because you think wrong” school of thought. Right… thanks for the help… next time, suck the oxygen out of my atmosphere; that’d be a real help.

Dave Bowman:
Hello, HAL. Do you read me, HAL?
HAL:
Affirmative, Dave. I read you.
Dave Bowman:
Open the pod bay doors, HAL.
HAL:
I’m sorry, Dave. I’m afraid I can’t do that.

Because sometimes this system seems to get input, but it just won’t generate any output.

On providers trying to assess from outside:

Mission Controller:
X-ray delta one, this is Mission Control. Roger your two-zero-one-three. Sorry you fellows are having a bit of trouble. We are reviewing telemetric information in our mission simulator and will advise.

On trying different treatments:

Dr. Frank Poole:
Let’s see, king… anyway, Queen takes Pawn. Okay.
HAL:
Bishop takes Knight’s Pawn.
Frank Poole:
Huh, lousy move. Um, Rook to King 1.
HAL:
I’m sorry, Frank, I think you missed it. Queen to Bishop 3, Bishop takes Queen, Knight takes Bishop. Mate.
Frank Poole:
Huh. Yeah, it looks like you’re right. I resign.
HAL:
Thank you for a very enjoyable game.
Frank Poole:
Yeah, thank you.

Yeah, thank you. Sooooooo much.
me-fingers-2up

This movie says everything you need to know about what it takes to deal with this disease:

  • It’s hard. Breathtakingly hard.
  • We don’t really know where it came from, and we really don’t understand why.
  • It’s crazy, and it does its best to make us crazy — and those around us.
  • It takes away more than we knew we had to lose.
  • We have to out-think it, even though it seems to stay 3 steps ahead of us.
  • Persistence — unvarnished, absolute, bloody-minded persistence — is key. Even when you feel you can’t, take a breath and make the next move. Keep working.
  • It seems impossible. It’s a harrowing thing to face, and has killed so many of us, in different ways.
  • It sabotages our efforts to improve things.
  • It’s worse than we could have imagined.

It really is like HAL.

So … Let’s remember who won.

Now a bit of Youtube for dessert, and a hopeful image for all in search of remission. Let’s pop those modules, one by one.

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Acute pain, chronic brain, and naming this ratfink disease

Complex Regional Pain Syndrome is the latest in a long line of names for this disease. Some of the older names have been recast to cover aspects of it, or versions of it, or special cases, and of course there are overpaid people who argue about it intensely. I’m going to go out on a limb and list a few sometime-names, sorta-names, and related-names to go on with:

  • Complex Regional Pain Syndrome
    Until recently, there were two subtypes: Type 1 had no visible nerve damage, Type 2 did. However, with chronic CRPS, there is extensive and pervasive nerve damage, and it makes no difference in treatment after the acute stage, so this subtyping is widely considered irrelevant.
  • Sudeck’s atrophy
    No longer used; atrophy of bone and muscle is really symptomatic, and not always present.
  • Causalgia
    No longer used, except as an old name for CRPS type 2.
  • Reflex Sympathetic Dystrophy
    Used by old-timers and sometimes for CRPS type 1, although CRPS-1 is not necessarily maintained by the sympathetic nervous system.
  • Algodystrophy
    More often used in Europe; also, neuroalgodystrophy. Problematic because it implies that this is the result of autosuggestion. I know I could not have made this up in a million years; moreover, extensive analyses of the literature show that there is simply no truth to that.
  • Neurodystrophy
    More often used in Europe. It’s a perfectly good name, but not the one that the IISP paid a bunch of specialists to come up with)
  • Reflex neurovascular dystrophy
    RND; no longer used, because it only addresses vascular changes, not neurology or systemic issues.
  • Shoulder-hand syndrome
    No longer used, except to refer to upper-body chronic neuropathic pain while dodging a CRPS diagnosis.
  • Peripheral trophoneurosis
    Good one, eh? No longer used, both because it may spread out of the periphery, and it’s not about neurosis. See “algodystrophy” above.

For more on comparative naming and different nations’ approaches over the years, check out the RSD Canada site.

A certain amount of acute CRPS does clear up (or go into remission) before it’s even diagnosed. Since it can take years to get diagnosed, there’s not a good way of figuring out what those numbers might be. Even after diagnosis, acute CRPS can go into full remission and never show up again, before it becomes the ground-in form of trouble I call chronic CRPS.

In its chronic form, CRPS is a disease of dysregulation — of everything being thrown off balance. Our efforts to push back against any given part of that are quite likely to throw our systems off balance in some other way.

The body doesn’t balance simply, like a seesaw; it dances in 4-D homeostasis, which I’ve explained here. It’s a bit more like this:
Trapeze_artists_trimmed
Now imagine pushing one of those trapeze bars the wrong way.

Adjustments need to be carefully incremental in order not to distort the system further, but often need to be done quickly because the situation is so horrible to be in.

It’s a conundrum.
Sketch of brain, with bits falling off and popping out, and a bandaid over the worst
Personally, I’d like to have different names for acute and chronic CRPS. Here’s why:

Acute CRPS is all about the pain, with swelling and dystonia and circulatory high-jinks playing second fiddle. With acute CRPS, good results are consistently found with vitamin C (500 mg twice or three times daily is the usual dose range) and also with activity plus pain control, both quite aggressive.

Apart from that, therapies vary widely as to what will work with whom, but chances of remission in the first few months are very good, and in the first few years are still comparatively good.

After that, the whole situation changes.

With chronic CRPS, you realize that you have to find a way to live around the pain because so many other things are going wrong, life itself has to take center stage at some point, and pain has to take its turn in the wings.

Once the brain plasticity has gotten going, it’s no longer just a pain disease, but a disease of dysregulation, as the signals change and the body’s responses to the signals change and the brain’s ability to even recognize appropriate responses to temperature, circulation demands, sensation, perception, and so forth, all slide downhill.
Bosch_painting_of_Hell_(582x800)
In acute CRPS, having the word “pain” in the name is absolutely appropriate, because that must be addressed to let the brain reboot and get back to normal.

In chronic CRPS, pain often remains a huge part of it, but the central brain-changes are what creates and sustains the disease state. Pain is, clinically speaking, a ghastly distraction.

It’s a key symptom, a good guide (since muscle weakness, sweat and circulatory changes all tend to track to it at least some of the time), but it is not the driving force of the disease. The brain changes are.
poison_skull
Pain is terribly seductive to researchers, because people who don’t have chronic CRPS think they “get it” about pain (hah!) and, since that’s easier to relate to than the word “complex,” let alone the hopelessly misunderstood terms “regional” and “syndrome”, what they focus on is the pain.

The real problem is the brain, not the pain.

In my private internal world of reason and order, chronic CRPS is actually known as Complex Neuro-plastic Dysregulation, CND.

My eyes make words out of letter groups, usually just by adding a vowel. What comes to mind for me is, if you don’t win at CR[a]PS, you get C[a]ND.
craps-tshirt-front
Makes all kinds of sense to me 🙂

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Threads on the loom: bereavement and CRPS

When I was 4, we moved to New Jersey from Turkey, as my parents thought their kids should get a feel for their native land. Our new backfence neighbors were a large and lovely family from Virginia, so I learned to spell “dog” both with and without a “w” by the time I was six.

The youngest daughter got me going on poetry. We read A. A. Milne and Louis Untermeyer in between dips in the kiddie pool. Her Mom, Mrs P, gave me drawing lessons when I was about 9.

My Mom was very maternal in her genuine enthusiasm for all my art. (I found that frustrating, because I knew it could be better and had no idea how to make it so.)

Mrs P did not have that problem with me… Her key edicts make reasonable rules for living: For one thing, I should not draw the whole scene until I was capable enough (don’t let things overwhelm you.) I had to pick the parts that were most important or that caught my eye, keep it simple, and do it right – or else there’d be erasing, and, if you erase too much, the surface gets harder to work on. (Isn’t that the truth.)

She was also good for the reality check. She quickly eliminated my grade-school habit of drawing red apples and brown trees, but made me look at a real apple and draw that; hold my colored pencils up to the tree and see which colors really matched.

See what’s really there, not what I expect or what I’ve been told things should look like.

The biggest note of approval I ever got from her was, “not bad.” By the time I was 6 weeks in, I was able to collect a “not bad” or two almost every lesson, which pleased me no end.

CRPS took away the link between brain and hand that let me make art, but one thing really stuck with me …

Why settle for good or even great, when you could aim for making it absolutely right?

“Good” and “great” are about others’ opinions, but “absolutely right” is something ageless that stands on its own.

Later that year, our parents sat us down to have a family meeting. Dad had been offered a job in Cairo, Egypt. He wanted to know what we thought about moving to Egypt in a few months. Mom and Dad discussed pros (long list) and cons (short list.) Older Brother asked about schooling (very good) and the social scene (unknown, but probably interesting.) Younger Brother piped up with characteristic curiosity and adaptability.

It seemed like a done deal, but I was wrong. Dad looked at me and said, “What do you think, Isy?” I must have looked surprised. He said, “You have a good sense of people. I don’t want to finalize this decision until I hear what you think it’ll do to us, either way.”

Should I be nice? My first instinct was to be nice, to stick up for the shabby underdog (in this case, New Jersey), to do what I thought was expected of me … but it stuck in my craw. Perhaps Mrs P’s lessons on seeing things as they really are had sunk in.
I said, quite honestly, that New Jersey was not being good for any of us (except maybe Younger Brother) and that Egypt would be new and interesting. We all liked new and interesting. So, as far as I could see, it was hard to see a downside to going, and hard to see an upside to staying.

So we went. And I got an early lesson in the value of calling it like I see it.

Our vacations were dreamlike, because we were close to some of the most striking sights in the world:

  • El Alamein and the remains of fallen soldiers from 5 continents;
  • The Red Sea, when it was still the most outstandingly varied and brilliant source of sea life on Earth (it’s still good in spots, as that video shows);
  • The southwest coast of Turkey when Bodrum (formerly known as Halicarnassus) was still a fishing town and their medieval castle the tallest building in it;
  • And, of course, the remains of roughly 8,000 years of Egyptian history from before the Old Kingdom, down through all those Rameses, Greek absorption, Roman annexation, Medieval flowering and Mameluk co-optation, the French and British tradeoffs, modernization as the royal family fell and the secular dictatorship accepted Nazi help to fend off the British return, the flowering of art and writing as the world wars faded and the newly mobile masses could collect like runoff from the tortured continent to the north. The Ancient history is only the beginning…

During the day, I learned about path-finding, history, and sea life, and in the evenings my mother read to us from local literature such as the Odyssey, the Iliad, My Family and Other Animals, even A Connecticut Yankee in King Arthur’s Court (the sharpest satire on jingoism and culture shock ever written.)

My parents had a gift for making the most of teachable moments.

The move turned out to be an excellent choice for all of us: Older Brother became a track star on the international circuit, I found a crop of kindred spirits, Younger Brother’s precocious historicity kept growing, Mom became a successful working photographer (and, as it happened, a role model of working womanhood for every intelligent female friend I had), and Dad got paid to help people – then towns – then governments get better and better at handling their money and improving their chances for a sustainable future.

The day I drafted this is the 38th anniversary of that move.

Dad was great at practical stuff. He genuinely liked humans, despite being such a historian. He often said that people are like table wine. Each one is a blend of different strains: good and bad, clever and foolish, creative and not, good with money and profligate, nice and otherwise… and each person’s blend is a little bit different. If you can accept each of them as the blend they are, and not try to change them – into a different blend, or even into beer, for instance – then you could really come to appreciate the variety that this world has to offer.

People are what they are. Accepting that makes for better connections.

The first time he taught me to drive was when we were on vacation in France, which was cheaper to get to than the US. We had rented a historical farmhouse that was about to become a gîte (at which point the price would go up), so we got all the benefits – a fireplace Younger Brother could stand up in, window sills two feet thick to sit on, a lush yard going down to a creek at the bottom with a moat up one side of the yard, a line of stately chestnut trees, twittering birds, fresh eggs and raw milk from the neighbor – for considerably less than we should have paid.

The rental car looked like it came straight out of a matchbox, but it was a real, rattly little French Renault. Dad sat in the passenger seat and directed me to the driver’s seat. He told me about the brake, the gas and clutch, the gear shift, the friction point, and how it all came together. I got the friction point coordinated and tested it a few times.

Then he said, “Okay, here we go.” I checked the friction point again and then stopped. He said, “No, I want you to go. Go ahead and drive across the yard.”

Oh, okay then. I can do this.

I grabbed the wheel tightly, engaged the gear, and eased past the friction point.

The car snorted briefly, pawed the ground, took the bit firmly between its teeth, and off it went. Or so it seemed to me.

The car charged off the gravel, kicking it up behind. It careened over the lush yard, carrying us past (fortunately) the huge stone house. It rocked and bounced off of molehills, scoring crazy tracks through the soft green earth.

I noticed my Dad was yelling, but he never yelled, so that was confusing. I didn’t understand a word of it, anyway.

Completely out of its metallic mind, the car charged past the trees, heading straight for the neatly-dug moat.

I was helpless to stop it. My own involvement had escaped my awareness completely. I simply hung onto the steering wheel for dear life, eyes wider than ever, completely absent to the fact that MY FOOT WAS ON THE GAS.

All at once, Dad finally got his full-grown leg around the gear shift and kicked my foot off the gas pedal and stamped on the brake in one astoundingly swift move.

The car sputtered, died, rocked to a standstill.

Its front wheels were on the lip of the moat. Below us, three feet of water and unimaginable depths of sticky mud glittered silently.

Little clods of earth trickled out from under the front tires and dropped in, stirring tiny clouds as each one descended through the water and into the mud.

All was quiet. Even the birds were too shocked to peep.

I sat there, frozen, hands locked on the wheel. I was alive. And dry. It was shocking.

I didn’t dare to move.

I heard Dad take a breath, and then take another. I felt, even with my head still turned away, two completely different speeches considered, then thrown away before he even made a sound.

I turned to see what he’d finally settle on, and whether it would finally involve a pair of hands wrapped around my throat – something I’d never seen him do yet, but you never knew, especially after a performance like that.

A pair of blue lasers drilled me to my seat.

Very quietly, very clearly, very firmly, he said, pronouncing each word distinctly:

“When what you’re doing doesn’t work… Try. Something. Different.”

Words to live by.

It was years until I was anywhere as green as Bordeaux. I lived along the Mohawk Trail in my 20’s. My excellent friend Paul was the hub of a wide circle of friends who, even if we couldn’t always stand each other individually, felt strangely as if we were still part of the same tribe: Paul’s tribe – or, as we called it at the time (such was his gift for invisible influence) The Tribe.

Paul was a master of appreciating people just as they were – even if that was not necessarily what the person in question wanted to be. He was the first to say, in assured tones,

“You’ll figure it out, Bella.”

He wasn’t kidding, either. He had complete faith in me, in spite of the evidence. I don’t know why. It sure helped, though.
My Dad died in early February 1999 while swimming in Egypt. I still remember the way the word “No” echoed off the walls of my little room at 4:08 am, when I got the call. The second flight on my 3-legged trip back East was overbooked, and I was going to get bumped.

I went up to the desk with my untucked button-down shirt, uncombed hair, and my own pair of blue lasers. Very quietly, very clearly, very firmly, I said, pronouncing each word distinctly, “My father is dead. I’m going back to bury him. I will be. On. That. Plane.”

And I was.

On January 23rd the following year, Paul decided to sleep late, and never woke up. On the plane to his funeral, I wrote to the father of one of my oldest friends from Egypt days, who had end-stage cancer. It started something like this:

“I’m on my way to a dear friend’s memorial, and I’m keenly aware that life is short and time is passing. Even though I don’t know you well, because you were my friend’s father rather than my friend directly, you matter to me. I want to let you know how important you’ve been throughout my life.” And then I told him about the ways his life had intersected mine over the years, brightening it along the way.

It was the last letter he received in this life.

Deathiversaries.

That’s my word for those days that sneak up on the calendar, dropping shards of stabbing tears out of a clear blue sky, breaking my knees for a moment as the agony of the unfillable absence hits me anew.

Now, not to strain the violins further, but the period that encompassed the deaths of my father, Paul, and my friend’s father also encompassed several other bereavements, a crippling stroke of my grandmother’s, the heartbreaking failure of my almost-marriage, the end of my nursing career due to illness, being too sickly-weak to make it to the mailbox and back for months, starting a new tech career from nothing but raw talent and pure luck, and moving.

And I really hate moving.

That was all in 18 months. I was a different person at the end of it. I’m sorry to say that it was someone who could face the devastation of CRPS with a lot more poise, but it still sucks.

Last Monday, January 20th, my old neighbor and teacher Mrs P died in her sleep. I haven’t seen her in 38 years (minus a week) but something as sharp and bright as faceted crystal slid out of my world.

My kitten Ari was a comfort to me, flinging himself firmly onto my body, as if to shove his strength and warmth into me.

He was enormous in every way: 10 pounds at 10 months and all of it lanky muscle, enormous love, enormous cheer, enormous charm, enormous athleticism, enormous independence, enormous courage, enormous confidence, enormous sense of humor … he was enormously unusual, even for a cat. He was an enormous invitation to life, just by the way he lived it.

Four nights after that, Ari disappeared. The following morning he was found on the road, dead and cold. Our Lovely Neighbors got us through, from finding his body to explaining to J to telling me. (I’m weaker now. It’s the buckling knees I remember.)
Partner J dug a perfect meter-deep grave, bedded it 6” deep in sprigs of fresh California bay while I blew sage smoke in, and I carried my kitten down to his final spot in the sun, at the bend in the path where he played with our dog and the Lovely Neighbors’ numerous cats.

I took the loss hard.

I’m an old hand at grieving. I can walk through the stages and the process in my sleep, although my body handles it worse all the time.

  1. The initial devastation and shock.
  2. The tasks:
    1. communicating the news,
    2. planning the funerary rites,
    3. preparing the final rest,
    4. performing the rites one needs to lay the deceased, as well as life with the deceased, to rest,
    5. cleaning up their things,
    6. comforting each other,
    7. getting something to eat,
    8. reminding everyone to be extra careful and remember to drink lots of water, which we tend to forget nevertheless.
  3. The reactions:
    • Noticing the way sunshine lands on my skin and birds sing in the trees but it seems to come from a world that’s not quite the one I’m in.
    • The way I have casual surges of wishful thinking: wouldn’t a bullet in the brain be nice about now? This isn’t suicidality (I promise), it’s my mind’s way of signaling that it’s overwhelmed by horrible feelings that it can’t do anything about, and it’s tired and doesn’t know what to do.
    • Re-learn the daily habits that this person (of however many feet) used to be involved in. That’s so dislocating. I don’t need to eyeball a certain corner of the bed before moving my feet now. I’m not even awake when I do that. It’s so horribly weird to wake up by realizing I don’t have to look.

Then the misnamed “stages” of grief, which are really nodes, which can be visited in any order.

  • The anguish, where life without that person has to be faced.
  • The anger, like, why couldn’t that little cuss cross under the bridge as usual, instead of testing one more damned limit and crossing over?
  • The bargaining, although I stopped bargaining years ago. I don’t seem to do that now. Too many unanswered prayers wept and bled into silence.
  • The sweet memories that stab like a ray of sun in my eyes, bringing tears that gradually wane over time, until those memories bring mostly sunshine.
  • Finding a new pattern beginning to emerge in my life, one that encompasses that absence without filling it, but making it less of an obstacle over time. They call that “acceptance”, but I think that’s a bit of a misnomer. I’d call it adapting.

I’ve only realized how very deep and interconnected life is by losing parts of mine. In that 18-month period of multiple losses, I found myself mulling the image of a complex weave on a loom, where each person and each influence in my life was a thread.

Some threads were solid and stable, some were wildly colorful, some thick with burrs, some wove in and out of the pattern, some were knotty and strange, some were pure gold.

When a major thread, or a lot of threads of any size, were ripped off the loom, then the fabric was distorted and there was a visible gap in it for a long time. I could weave on, but that band of the fabric was weaker – sometimes for years, sometimes for a lifetime. It takes a very long time to rebuild from the loss of enough warp threads.

It takes time to work new threads into the weave of life, and longer still to see which ones work in the overall pattern, and which ones fall out on their own – or need to be pulled out, for the damage they do to the rest.

Some people and influences are part of the warp, as they’re meant to stay in the weave for its length and are made to be strong. Career, close family, good friends, matters of identity – these are all warp threads which usually shape and color our lives all along its length. Each one has its own color and texture and breadth, which varies from person to person, and each contributes a depth of color and texture to the weaving that nothing else can provide.

In life, unlike fabric, the warp threads are highly individual.

When one of those gets ripped out, the whole weave … well … warps.

Some people and influences are weft threads, and are easier to change out. Doctors are usually weft threads, although the need for medical care is a warp thread for some of us. Jobs are weft, while careers are usually warp.

I lost a number of warp threads in that 18-month period. Between the end of January and the second week of February, the closest bereavements hit, year after year. The weave of my life has warped, over and over, in the armpit of winter.

I shift my stance from relying unthinkingly on having a lot of strength inside and out, to being mindful and precise about where to put my diminishing attention and energy.

I’ve learned to be more and more aware of good times, genuine love, beautiful days, radiant people, perfect moments, delicious food …

When I look back, I have far fewer regrets when I really noticed good things at the time.

I didn’t expect to have that kitten in the first place.
Even in this season of bereavement, I didn’t expect to lose him so soon.

But when he was here, keeping me permanently in a mild state of befuddlement because he was so much larger than life but still so very young, I sure noticed.

One day, that should be a comfort.

Meanwhile, as CRPS continues to change the game on me, I’m trying to learn to handle bereavement-amidst-deathiversaries with this new and different body-system.

My autonomic system is normally in a state that maps most closely to that of someone who’s being continually beaten with a live cattle prod, but years of practice have taught me when to ignore it and how to manage the results somewhat.

It gets better and worse from time to time. Stress, uncertainty, poor diet, missed meds, solar flares (believe it or not), and injuries, all crank up the volume on my oscillating central nervous system.

Bereavement is stressful, unpredictable, and contributes to poor diet, missed meds, and injuries. (Possibly solar flares for all I know.) Deathiversaries are a hardwired physical memory of bereavements. Having both at once is like being hit from both sides at once. Double oscillations that don’t cancel each other out, but feed into each other and magnify their effects.

All right… What’s an oscillating nervous system like?

Right now, the skin on my face is so raw that my partner’s nice springy beard feels sharper than a cheese-grater. My left lower leg wants to turn into a lump of Dacron, impenetrable and basically useless. My wrists and forearms, well, the less said the better, but I have to hold my mug with both hands to avoid wearing what’s in it. I went outside in soft shoes today (I usually wear hiking shoes) and the friendly little stones in the yard slowed me down considerably, as each one wanted to get way too personal with my foot-bones.

That’s the physical side of CRPS.

Because of the brain changes that make that stuff happen, there’s a parallel process that happens on the emotional side. Imagine the same degree of relentless rawness and unquenchable pain inside the heart and mind, and you’ll have some idea what it’s like.

I’ll give you a minute, if you like.

I don’t mean to whine, it’s just a fact of life with this disease. It takes a lot of managing, because my mental state wants to default to, well… how distressing and upsetting it is to be beaten continually with a live cattle prod.

How do you deal with an oscillating nervous system?

When your world is being purged, it’s important to replenish and nourish. This means extra antioxidants, extra meditation/biofeedback, extra hugs, and – if possible – someone else to clean the house and help with laundry and cooking.

One must eat, clean, and cope, and if it takes help, then I ask for help.

Herbal lemon balm extract helps cut the flared nerve pain. Chamomile and lavender tea, maybe with tulsi, helps me get to sleep. Some people do well with vervain or ashwaganda.

Homeopathics like ignatia amara and hypericum ease other parts of my nervous system responses. Also, I use an essential oil blend from Young Living called Valor, to reduce the hotwired panic reflex and hyper-alertness.

In case it isn’t obvious …

I don’t care what academics say, I only care what works for me. Empiricism is the only form of science that matters in the individual case.

I keep busy in order to keep my mind from exploding over the surfeit of losses and memories of losses, while CRPS takes the brakes off of all the feelings – physical and emotional alike.

This leaves me to manage the resulting inward chaos with whatever poise I can fake, because I know that a certain part of it is grief but a certain part of it is simply brain damage.

Either way, it will ease up in time.

So I keep busy, take my supplements, comfort the dog (whose heartsick look would make a stone weep), try not to draw attention to my partner’s look of not knowing what hit him, and wait …

Mostly, I wait for the balm of time, because it doesn’t change the loss, but it helps me learn to live with it.

Also, it moves the deathiversaries into my rearview mirror for another year. Until then, I’ll hold the love and leave the pain as much as I can.

Lastly, I wait for the fierce oscillations of my nervous system, humming and shaking like a five-foot-high tuning fork, to decrease and diminish and eventually …
quiet down …
to … a …
stop.

There is always an afterwards. Survival is simply a matter of getting to it.

Managing CRPS under this kind of duress is not magic, it’s persistence.

I keep breathing and let the awful moments pass. I’m old enough, both as a person and a CRPSer, to know that there are better ones ahead.

All I have to do is get there.

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Documentation — Long time? Timeline!

I collected health info on others for years. I’m what clinicians call “a good historian” — and in the health context, it means someone who can tell you exactly what happened to them and when it happened, and they turn out to be right.

This is fine… as long as I can keep track, and as long as the story is short enough for someone else to remember after a single telling.

cartoon of surgeon hiding a saw behind his back.
They aren’t always paying attention.

This isn’t going to remain true for any case over a couple of years in the making, and certainly not for a case that even started out with multiple diagnoses: volar ganglion, tendonitis, and repetitive strain.

When I noticed that a doctor’s eyes were glazing 5 minutes into my recital of events, I knew I had to do this differently.

I started keeping a timeline. It was a nuisance to set up, because I got injured at work, and U.S. law doesn’t necessarily allow me to get copies of my records under those circumstances.

So I drafted my first timeline from memory, journal entries, and my datebook, and asked my doctor’s staff, as sweetly as possible, to please check the dates for me. They loved the timeline and were happy to do so.

As you can see, this is before I had a lawyer, and reflected my personal tendency towards information overload:

First 2 pages of first timeline
Click to link to the 3-page PDF.

As you can see, I decided to keep my timeline in a table. I found that to be the most natural way for me to organize the layers of information in a readable way. But then, I had just finished hand-coding and debugging about 21 pages of HTML tables in raw markup. Tables were easy for me!

To some people, a table of text just looks like word salad.

 

I can understand that.

 

There are other ways to organize information: brain maps, fishbone diagrams, bullet lists with nested lists, even labeled images linked together. Search any of those terms, or even terms like “information architecture” or “flow charts”, to look for ideas.

I took a later version of this to my first QME (QME=Qualified Medical Examiner, a consultant called upon when a U.S. insurance company disputes care in an injured-worker case.) Bless his stern and rock-bound heart, he gave me excellent advice. Here it is, as close to his wording as I remember:

  • “Leave out the insurance stuff. It’s not my department. It’s distracting, annoying, and clutters up the timeline for me.”
    (I was not offended, because I’ve worked with a lot of hotshot doctors. I fully expected the brusqueness and just listened to the words for information. That information was pure gold.)
  • “In fact, thin this out a lot. I want facts, data, not suppositions or what you read. I want to know exactly what happened to you and what your doctors said or did. Everything else is filler. I’m a doctor, so doctors’ ideas are what I care about.”
    (That was frank! And an excellent statement of inherent bias, which I really appreciated knowing up-front.)
  • “Take out the personal impact? No! No. I want that in there. It tells me how this really affects your life, and I should know that.”
    (He was almost human when he looked at me then. It was a cool moment.)
  • “But I DO want the personal impact to be visually distinctive, so I can screen it out when I’m looking for the medical part alone.”
    (That’s fair.)
  • “I’d also like to be able to find your work status more easily. This is a worker’s compensation case, after all.”
    (Good point.)

That man should advise more designers. He’s retired from his medical career now, and I hope he’s enjoying himself immensely.

My next timeline, for my next QME, was much leaner and it distinguished between three key types of info: straight medical information, work status, and personal impact.

timeline-beta
Click for the full PDF.

Did you notice how the hand images I wrote about before are referenced right in the timeline? This is a great way to build your case. The pictures kick the message of your disease progress and your needs right through concrete.

Incidentally, this uses mutually-reinforcing teaching principles: multiple sensory inputs, plus multiple paths to the same info, equals excellent retention. Your doctors will really be able to remember what your case looked like and what happened along the way, what worked and what didn’t.

Dr. F was pleased to see the table and thought it was basically a good idea, but looking at it through 78-year-old eyes was a different experience. He gave me his own feedback, speaking as someone who had gone through more medical records and had more problematic vision than anyone who’d looked at it yet:

  • “Yes, it’s nice that you picked out the work status, but I want to be able to see surgeries, x-rays, the really important stuff, just as easily. No, even more easily.”

I picked those out in bold and flagged them in the left column:

timeline-gamma
Click for a closer look at the PDF.

Before long, I learned to condense multiple entries so I could use one row for several visits that were about one issue, or where there wasn’t much change:
timeline-condensed
Then I saw a doctor who had more human sensibilities. He said,

  • “Why not use colors? I want to see surgeries and tests in different colors.”

I asked, “Do you want the different kinds of tests in different colors, so you can distinguish Xrays from MRIs from nerve studies at a glance?”

  • “No, no, that’s too much. I can read EMG versus MRI; I don’t want too many colors. I want the surgeries to really stand out, though. Put them in red.
  • “And I want to see the legal pivot-points, too, because that affects your case.”

Easy enough.

timeline-colors
Click for pretty colors. subtly used, in the PDF.

Then the first page grew legs. Someone along the line said,

  • “One more thing. I’d really like to see your allergies and medical-surgical history immediately. If you could put that up front on this, that would give me the most critical medical information right off.”

That was a real forehead-smacker for me…

I used to be a triage nurse. I used to collect certain information on every patient I saw, regardless of age, sex, race, or what they came in with.

TRIAGE INFORMATION:
– Name, date of birth.
– Any medical diagnoses.
– Any surgery, with dates.
– Current medications and doses (if they recall), and what they take it for. (This fills in a lot of holes on the medical and surgical stuff — you’d be surprised what people forget. “Oh yeah, my heart stopped last month.” Good to know!)
– Allergies — and what the reaction is (because there’s a world of difference between something that gives you a stomachache and one that stops your breathing, and we need to know this if it winds up in the air or, heaven forbid, the IV line.)

This is basic. This is absolutely basic. It’s essential information that should be immediately surfaced on every patient’s chart. How could I take for granted that it would be easy to find in my medical record? The whole point of needing the timeline is that, after a couple of years, my medical record was a mess!

Also, after years of popping from one specialist/QME/consultant to another, I got tired of having to dig out the same demographic and billing information every time they had to generate a new chart.

I had a brainstorm: make the first page into a billing/demographic sheet, add the triage information, and start the table on its own page after that.

It all goes together on the medical chart anyway, and one of the unsung truths of medical care is this: make life easier for the desk staff, and they will make life easier for you.

timeline-coverpage
Click to see how I organized this info. PDF format.

After all this time, I can put my whole history with this disease into one single document that totals 10 pages.

  1. The first sheet has my contact, billing, and demographic info.
  2. The second has my more-extensive medical/surgical history, medications and yet more allergies, and priority notes, highlighting my CNS sensitivity and emphasizing that cognition matters most.
  3. The rest tells all the key points of 14, yes, 14 YEARS of injury and disease, in only seven and a half pages.

Here is the final result:
timeline-current
Every doctor, with one exception, who has seen this, has cooed — literally, cooed — with delight. They ask if they can keep it (I tell them to put it in my chart, so they can always find it. “Ooo, great!” they say.)

This one doctor looked at it, laughed rather sardonically, and said, “You spend way too much time on this.”

Clinical note: For the record, that is not an acceptable response. What clinician makes progress by dissing patients on the first visit? Right. None. The thing to do here is ASK; in this case, ASK how much time this patient put into creating the documentation. The answer certainly surprised this one.

I set him straight, in my sweetest tone of voice. I said, “After the initial setup, it requires only a couple of minutes of maintenance every few months. That’s it. Moreover, you’re forgetting that I used to be an RN and a software documentation writer; this information is easy for me to understand and easy for me to organize. If I CAN’T do this [gesturing to the document in his hand], you need to check for a pulse.”

He never sassed me again.

However, most of what I told him is true for all of us.

We are the subject-matter experts on our own bodies. Never forget this and never let anyone tell you otherwise, because they are wrong. You ARE the subject matter expert on your own life. Nobody else really knows how you feel or what you’ve been through.

 

It’s in your power to communicate that clearly enough to work with. It’s just a matter of figuring out how.

Once you get a timeline set up and put in the key events so far, it takes very little to maintain. I update mine before every key doctor visit — when I see a new one or when I need to see a QME or, of course, when I think a doc is losing the plot.

It takes me less than half an hour to update contact info, meds, and current entries, and I do that once or twice a year now. That’s a great effort/benefit trade-off!

Moreover, keeping a timeline has life-changing benefits besides simplifying explanations to my doctors. Every long-term patient can see how utterly transformative these changes can be:

  • The doctors take me and my case absolutely seriously from the get-go (or else it’s obvious right off that this person is never going to, and I need to move on. That saves time!) It stops arguments and attitudes before they even start. It makes me almost human in any good physician’s eyes, and that’s nearly a miracle, because, generally, they can’t emotionally afford to think of their pain patients as human. (This explains a lot.)
  • My medical records are a lot more accurate, because the providers writing them have this great cheat-sheet right there to help them stay on track and keep their facts straight. This has saved me more grief, bad treatments, misapplied care, getting meds I’m allergic to, and chasing red-herring issues with the insurance company, than I could ever count.
  • I can keep my limited brain-space free for handling the appointment and looking ahead, instead of trying to wrestle my complex history into shape. This makes my visits a lot more valuable to all concerned.

I consider my timelines to be worth roughly 1,000 times their weight in plutonium. A little bit of effort has paid off thousands of times over, and made it immeasurably easier to keep this messy, protracted, brutally complex case on track for nearly one and a half decades.

Now that’s a good trick!

clip-art-dancing-755667

Timeline Tips:

  • Put your name and the date on every page.
  • Put triage information (in second blockquote above) at the top.
  • Highlight surgeries and invasive procedures in bold and red.
  • Highlight tests and noninvasive procedures in a different color or style.
  • Highlight life impact, but keep it separate from medical info.
  • Attach the relevant doctor’s name to each procedure, diagnosis, or consultation.
  • Track adverse events.

Remember, this and all my blog work is under a Creative Commons Share-Alike Attribution license: do anything you want with it, as long as you don’t keep others from using it. I’d love it if you’d credit me with my work, but don’t let that slow you down.

Use it. Share it. Spread it around.

Bien approveche — may it do you good 🙂

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Documentation – a picture’s worth a thousand words

Doctors believe what they see.The training they get and the laws they must follow all reinforce that. If they see it themselves, then it’s real; if they only hear about it, it’s hearsay, which is much less believable.

This is why it’s hard for us, as chronic pain patients with all sorts of hidden issues, not to come off as shrill and demanding: we expect them to believe what we say, and they find that outstandingly hard. It goes against everything they really know.

Therefore, show them. Put it in pictures, put it in print, and watch their expressions change before your very eyes.

sketch of excessively happy doctor running with a hypodermic needle
They should always move with such alacrity and glee 🙂

This is the first in a series of posts about the documentation that I’ve used over the years. I’m starting with the time I got tired of pointing to my arm and saying, “Well, it was like this (gestures) last week and it’s like this (different gestures) most of the time this week. It’s only blue because of the cold.” And then he couldn’t remember what I said it looked like a week ago.

No help at all.

So I went home, put my hand and forearm on a piece of paper, and drew an outline around it. I came up with a set of symbols to show what I needed to track, and marked up the outline accordingly.

As my situation changed from week to week and month to month, I grabbed paper, put my arm on it, drew another outline (I really should have made blank copies), and filled it in with the current state of my arm.

Lo and behold, I hardly had to say a thing. One doctor looked over my stack of images and said, “Wow. They really tell the whole story, don’t they? I hardly need to look at the medical record.” He did anyway, but was pretty quick.

My office visits were a lot more productive after I started keeping those pictures. I called them “snapshots” and collected quite a few of them before the case became too complex and moved into different territory. (More on that later.)

Here’s the key I came up with to explain the symbols I used for the symptoms I had at the time:

6 different scribbles to show 6 different signs and symptoms
key to snapshot scribbles

As you can see, I just scribbled patterns which I found easy to remember. Nothing fancy.

Each sign is distinct from the others, except for the two strengths of “bruising” (I now know that that was CRPS discoloration), which are the same symbol at different densities. Makes sense, right?

Here are the first 3 images, and what made the difference between them:

Baseline, after working as best I could with the injuries:

sketch of hand that shows extensive pain and bruising.
My first stab at this. What can I say? I was a writer and musician, so I took my hands very seriously.

After about 4 weeks off duty, resting and recuperating:

sketch of hand showing very little pain or discoloration.
It took 2 weeks just to relax, but I succeeded.

After 1 single week back at work on restricted duty:

sketch of hand showing pain and discoloration going further up the forearm than ever before
Yeah. Sucks, huh?

That doctor was right. They really do tell the whole story.

See how easy that was? 🙂 All it took was a pen, paper, and a few notes.

Here are some tips:

  • Put the date and your name on every single one, always.
  • Be consistent about how you label things. They don’t need to learn different labeling systems, they need to learn your case’s course over time.
  • This is a good place to note your pain ratings.I annotated my snapshots with current pain range (at rest and on exertion), bullet points and narrative notes, but it took awhile to learn to keep those annotations very short and to the point.

I scanned all the snapshots into my hard drive, so I can recreate these at any time. I find it very useful when breaking in a new team, because the story told by my first few years of pictures really does tell the key parts of those first few years. They “hardly have to look at the medical record” to understand — and remember! — what happened.

Plus, you clearly don’t have to be an artist to make these pictures accurate and useful 🙂 If tracing around your own limb is too painful or awkward, there’s no reason not to ask someone else to do theirs. Alternatively, you could take a photograph and use image-editing software (available with your camera, or for free or cheap online) to mark the image with your signs and symptoms.

There are lots of ways to get these images going, with any set of tools. And boy, are they ever worth it.

As a point of interest, the freeware I use for editing images is called Gimp. Perfect tool-name for someone like me, eh?

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On sleeping despite all this

This is a brain-dump from a recent social-media post. Since the same question was asked 3 times in one day on my groups, I figured I might as well put it all right here and link …

Stylized image of woman asleep with enormous red and black dress billowing around and supporting her. White snow falls from a deep blue sky

I used to be a night shift nurse and a home care nurse. Boy, do I have advice about helping your body sleep. Pick and choose what to start with and try as many of these ideas as you want, until it starts coming together and working well for you:

* Positioning. (Old nurses and physical therapists can be really good at this — we don’t get to write prescriptions, so we have to go with what really works and has no side effects. Oops, did I say that out loud?) Invest in enough pillows that you can, as needed, elevate appropriate limbs; support your neck; cradle your head; support your back and hips; pad your knees; get your upper body at a good enough angle so your blood doesn’t pool too much in your head; if you’re a tummy-sleeper, this can be really interesting because you need to slant your whole body from the knees up. Positioning, and the pillows/towels/blankets that requires, is generally the first thing to address.

* Have a regular bedtime routine. This gives your body and brain a consistent, reliable set of cues that it’s getting towards That Time. Our too-plastic brains need to be constantly retrained. Mine starts about an hour and a half before bedtime; I would do well to move it up to 2 hours,, as my descent into sleep is iffy.

* Turn off electronics (TV, phone, interwebby stuff) 1.5-3 hours before bed. There are several reasons for this: multisensory stimulation, EM activation, input from the outside world beyond your control, input you need to react to or decide not to react to (all of which suck up neurotransmitters.) All of this cranks up the primitive brain. Mine goes off around 8-8:30 pm.

* Listen to soothing, calming music for an hour or two before bed. I love classical chamber music, especially Mozart, Bach, Schubert, Rachmaninov, Pachelbel – elegant but not too emotional. Soft jazz or soft rock are also good for those who don’t care for classical. The brain patterns readily to music, so this is like free help.

* Speaking as a night shift nurse, I have to say that chamomile tea is the best, bar none, the BEST way to get the squirrels off the wheel. It doesn’t make you feel as “different” as sleeping pills do, so many people under-rate it dramatically. I noticed that most of my patients couldn’t even get halfway down the mug before they passed out completely, so I know it works objectively, even if it isn’t dramatic subjectively.

* Tulsi, or holy basil (Latin name occinum sanctum), is an herb from India that actually lowers cortisol. (It was used to teach novice monks what a calm mind feels like, so they could get it together with their meditation.) If you get that pop-awake in the wee hours, that’s probably cortisol, and tulsi at bedtime can do a lot of good.

* Ashwaganda has similar abilities, but I haven’t used it much so I haven’t studied it. See what you think. Some teas have both.

* All major herbal traditions have herbs that help. Tulsi and chamomile work best for me, but valerian works for others. I find hops stimulating, and wouldn’t go near poppy or belladonna because of my CNS sensitivities. Those with migraines, central nervous system and some vascular issues need to check twice before using some hypnotic herbs… This is well worth discussing with an herbalist, because they can make all the difference if you get the right recipe.

* Melatonin can help, too. There are two ways to use it: at a “metabolic dose”, which means one tablet can last 8 doses, and that’s just to remind your body to do its calming down; or at a pharmaceutic dose, in which case you can experiment with the different dosings available (usually from 1 to 4 mg, I believe.) See which works for you.

* You can also use 5-HTP before bedtime, which is a good serotonin precursor. If you’re on antidepressants, start at low dose and be mindful of its effects; it can potentiate your antidepressants, making them more effective at a lower dose. Being overdosed on serotonin can be counterproductive, as it makes it very hard to wake up completely!

* If nightmares are making it hard to nod off (often the case for me; I can tell I’ve been having nightmares if I can’t make myself calm down for sleep) then lavender oil dabbed onto either side of your pillow can be a real help. Or a lavender pillow, but remember to refresh it as needed. It’s very good for keeping nightmares at bay.

* Get what activity you can, pretty much every day, and stop exercising either before 5 or before 3, depending on your system. Activity helps regulate the autonomic nervous system, especially if you respect the body’s natural diurnal cycle and take enough time to let the neurochemistry slow down at the end of the day.

* Be mindful of your caffeine intake. Caffeine in the morning can be a huge help to keeping the diurnal cycle regulated, but it’s important to lay off it in the later afternoon and evening, because the disruptive effect always lasts longer than the real waking-up effect.

* Be gentle with yourself. Take the time to learn what works best for you. Be considerate of your household regarding lights and noise, so there’s less fallout in the morning. When you’re stuck awake, remember that rest is still restful, even when it isn’t sleep, and do your best with what you can get. If all else fails, make the most of the time, and try again tomorrow night.

Prolly enough to go on with for now… any other thoughts, folks? 🙂

On a lighter note…

toon_dlewis_bedtimeroutine

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International group post: Love is portable

The point is this: love is portable. Real, solid love can handle time and distance.

I’ve been saying that for a very long time. I didn’t know, however, that even the formation of love can cover distance. It can cross the globe.

I grew up overseas. Since there wasn’t always a credible, accredited school where we lived, this meant we kids were sometimes away from the family for months at a time. I learned to handle it in a curious way …

I realized, in a deeply personal way, that the same sky covered us all, and the same world held us. If I could see the stars, I felt very strongly that my brothers and parents could see those same stars — if not today because of clouds, then perhaps tomorrow or yesterday — and knowing that we could look at the same stars was a powerful comfort to me.

Beautiful colored view of a star-forming region
Star-forming region in the Magellanic Cloud. Photo from NASA’s Hubble project.

It doesn’t have to make sense, if it works.

As an adult, I got a dreadful disease that requires more research to manage and understand than one person can do in a lifetime. It took me weeks in the Stanford medical library to realize I had something truly rare. Once I was finally diagnosed, it took me months to begin to understand the complexities of what I have.

I also got the internet and a membership in an online pain group … and eventually a blog and social media accounts.

And suddenly, I wasn’t alone.

That first group’s administrator got me through the second major test of survival. (This disease has caused quite a few.) She’s on the other side of the country.

As I’d reached out to her in desperate need, I found someone else reaching out to me in a similar fashion, and she’s a nearly equivalent distance North, in another country.

Then I met the Swede, the Briton, the Belgian, the Icelandic… then Australians, New Zealanders, Chinese, Japanese, more Britons, French, French-Canadian, Dutch, Danish, Mexican, Argentine, and on and on and on. Any country with a health system sophisticated enough to think of, and look for, rare diseases, seems to have people with CRPS.

Let’s think about that for a moment.

OK, that’s long enough. It’s depressing.

The truly international distribution of the disease is almost as penetrating as the international distribution of the internet.
The Earth's winds. Not a bad metaphor. By NASA's Goddard center.
I could go on about the obvious benefits — having someone to chat with at almost any hour is a good one; having such a wealth of perspectives on health, medical delivery, and self-care is another; being able to discuss findings in one country that aren’t yet known in another is a hottie; and, of course, there’s always someone worse off to make me feel humbly grateful for my little all; but these are pretty obvious and probably stated better elsewhere. I’m not doing too well above the neck this week and I have to keep it simple.

This disease has stripped me of many of my friends, my careers (both of them: nursing and software), almost all of my hobbies, most of my strength and stamina, and pretty much every illusion about life and humans that I ever had.

Life can be bleak when it’s this lean. There has to be more to live for than usual, not less, when every day is another stab at the same tedious, repetitious, miserable slog that would make me say to Sysiphus, “Quit your whining, kiddo. Trust me, you’ve got it easy.”
Sysiphus looking miserable as he pushes a rock up hill... with poor body mechanics.
But every connection that I make with my CRPS cohorts makes me stronger. And — how do I say this without sounding mushy or daft — these aren’t superficial connections. I would gladly stop a bullet for my friends, not that that’s likely to happen … but then, it’s easy to find something worth dying for. The trick is finding what, or who, is worth living for.

Any hour of day or night, I can log on and find a soul-sibling somewhere in this world, beyond first-languages and politics, beyond gender and race, beyond anything that might have mattered once.

I don’t have time to ask permission to use names before posting, so my own ethics force me to skip personalization, but the fact is, ladies and gentlemen, you light up my world.
Earth seen from the moon. Earth is gibbous.

When I get discouraged or disgruntled about this tedious, repetitious, miserable slog, and I can’t remember the self-care routines that can help me with it, instead I remember my friends: this one’s Celtic ferocity; that one’s wry wit; the painful eloquence of one; the utter gentle kindness of another; the ghastly spelling over the radiant sweetness of yet another; the shining fragile beauty and boundless courage of, well, all of them …

Every piece I write has to meet multiple tests of integrity before it gets posted: factually accurate, logically defensible, ethically sound, emotionally true (but as the rambling nature of this one indicates, brilliance is NOT a criterion, or I’d be posting a whole lot less.)

That list of criteria has a lot to do with who I think of when I write. It’s this absolutely global, polyglot, brilliant, loving, well and widely informed set of people. Each one of us has our strengths and our weak points, but collectively, we are astounding. Utterly astounding.

I have to live up to that, and be translatable … and it’s an honor and a challenge, every time.

CRPS has taken much, but the internet, mother wit, and a quorum of luck has given me infinitely more. I’m a better being and a better writer because I share the world with people like this … and I’m aware enough to know it.

I have plenty to live for. Screw the slog. Sysiphus, move over and I’ll show you how it’s done.
girl on a flat beach kicking a ball high

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