Treating CRPS enough to have a life

Someone asked a question on social media that led to my doing a brain-dump on the basic format of current treatment for CRPS. This will take on a more formal form, but right now, for quick reference, here it is.

Like many others, this person has narcotics as a primary form of pain control. Increasing the dose increases function, but past a certain point, is that a good idea?

And, more importantly, the biggest question was, what does it really take to be able to have a life again?

 

Common-sense note on narcotics

Firstly, it is GREAT to have something that works. I know plenty about narcotics from a physiological and neurological and even a gastrointestinal standpoint, so I know the arguments for and against — but, when all is said and done, it’s great to have the option and it’s great to have something that works for you.

Keep what works! Unless and until you really can replace it with something better. (Clinicians, in their overbearing way, can be pretty cold about this.)

In the end, if you need to increase the dose, then increase the dose, but given how our bodies adapt and the disease shifts over time, it might be good to keep higher narcotic doses in your back pocket for breakthrough pain and flares, and see about the other meds that treat nerve pain specifically, support (in some cases) your neurology so you can function better and be more stable, and leave some slack in your body’s narcotics “budget” for other times.

Doctors should be able to support the idea that you should be able to have a life, and happy to help you figure it out. Good pain specialists have this as a specific goal which they try to help us reach as much as possible for as long as possible.

Read tamingthebeast.ca or elsewhere on this blog for loads of tips on nutrition, homeopathics, herbs, and other at-home strategies. This is just about the stuff your doc can do for you.

I mentally break these into 6 categories, 3 of oral meds and 3 of other, more interventional stuff:

MEDS

  • Neurochemical support: Mostly antidepressant-category meds, from tricyclics to SSRIs to SNRIs. SNRIs have the significant bonus of potentially stabilizing a faulty ANS.
  • Transmission shifters: Mostly anti-seizure meds, Lyrica and Neurontin. Ketamine certainly shifts nerve signal transmission, and the protocols for giving it are getting better and more specific. Technically it’s an NMDA receptor antagonist, but it affects opiate and MAO receptors too.
  • Calcium “wranglers”: Calcium channel blockers, bisphosphonates.

Basic principles of medication

  • Remember, all meds have side effects. There is no free ride; sorry!
  • Most of our meds can affect judgment, memory, and perception. Ask a relative, housemate or friend to check your brainpower and personality, to see if there are effects you’re not aware of.
  • Avoid polypharmacy, or too many meds, because it’s a great way to create a neurochemical mess. I stop at 3 different ongoing meds, since I can’t tell what’s causing problems if I take more. I also have 3 as-needed meds, which I rarely use, unless the side-effects of the pain/nausea/wheezing are worse than the side-effects of the meds.
  • Last but not least, med is spelled M.E.D. which means Minimum Effective Dose. Both adjectives are equally important. It must be effective, or why are you taking it? It must be the smallest dose that really works well, because otherwise you’re dealing with the same issues mentioned in the previous points, and they get a lot worse with overmedication.

Keep in communication with your doctors about your meds. If they’re savvy, they’ll work with you to optimize your medication profile for best functioning with fewest problems.

INTERVENTIONS

  • Injections and implants: spinal root blocks, prolotherapy, spinal cord stimulators, botox injections, spinal baclofen infusions, implanted drug dispensers.
  • Zaps and rads: TENS (electric counter-stim blocks the nerve pain), TCM (electro-magnetically stimulates and remaps certain parts of our brain that support the disease), Calmare (a more complex electrical technology that retrains the pain signal so it eventually doesn’t restart.)
  • Retraining, rebraining: Multi-Disciplinary Functional Restoration/Rehab is the gold standard for treatment. Most of these programs, but not all, require participants to be narcotic-free. The puritanism I can do without, frankly, but the whole-person approach, and the enormous mental toolkit you come away with, is absolutely life-changing.PT, OT, counseling, and learning about relevant subjects from pain mechanisms to nutritional effects on pain and function to communicating effectively with those around you so everyone can do more with less effort, is simply tremendous. It used to be a shoo-in for US citizens because it got people back to work so effectively, but in the industry overall it’s more profitable to keep us sick, so now it’s harder (but still possible) to get that paid for.You have to have determination and some mental flexibility to get admitted into a program, because it’s hard work, but if you find a program that agrees with you, then it could be the single biggest change in your life.

Every time something goes under your skin, your body has a shocky/inflammatory response. It may not be noticeable, but if it is, be ready to manage it.

If you get an invasive procedure, like implants or injections, then use one of the vitamin C protocols to help ward off flares and exacerbations: 500 mg 2 to 3 times daily, for 1 to 2 weeks before the procedure and 2 to 3 months afterwards.

Now what?

Talk over these different options with your doctor, if you haven’t already — increasing your current meds, using supplemental med support, trying technologies and interventions, risks and benefits.

Also, sadly, it’s important to discuss the realities of funding and insurance coverage, so that you can develop contingency plans to follow in case your hoped-for option doesn’t get approved right away.

Always leave yourself a way forward — that’s a good strategy 🙂

There is a lot that can be done, and most of us cobble together a few different things that work a bit so that, together, they add up to enough to let us … have a life 🙂

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Move slowly, stay happy… except when pushing one and a half to two inches straight down on the lower half of the sternum

We went to a great farmer’s market, where J got me a ceviche tostada that had to be tasted to be believed. I got a flat of outstanding organic peaches to dry for the winter. All this is much easier said than done, because today, for some reason, is pretty harsh as pain days go.

J wanted to know, in his brusque-backwards way, what I intend to do about it.

I replied that I’d probably trim his hair, then lie down for a bit, then watch a silly show, then come help with the wood — which means, bringing cold drinks and looking on admiringly.

I said, “Managing pain days is basically a matter of, move slowly and stay happy — to the extent that that’s possible.”

He liked that. He added jovially, “Used to be more like, move quick so I can get away from people — then I could stay happy,” he said, veteran of a socially hideous region.

We both laughed.

matchgrins-horsenwoman_decamps-pauline_4blog

Moments later, we saw people beside the road, one lying down. I saw CPR.

CPR

I barked, “Pull over NOW!” J knows my voice, and he’d never heard that tone before. He did. Instantly.

A first responder was doing chest compressions, and getting tired. CPR is incredibly hard work; if Mr. Universe did CPR, he’d tire even quicker.

I got down and planted my less-injured hand on the responder’s stacked palms and between us, we made a strong enough compression to create a pulse in the patient’s leg. This is what you want to do: create an artificial pulse, to sustain the vital organs until the heart itself can be restarted.

The runner had felt chest pains 5 minutes before, according to his workout partner. Then he went over. Just like that.

I won’t go into messy details, but by the time the helicopter was landing and I’d brushed myself off to come home again, I was aware of how strange it was to do this outside the ER, to snap into lifesaving mode from a standing start, and to find myself — without the mental shield of my work-badge and trusty stethoscope — turning away from a still-blue figure and not knowing if he’d make it.

J said of the man behind us, in his elliptical way, “He didn’t look like a jerk.”

I said quietly, “No. He had a really nice face.”

I’m sure he had good medical care. He worked out to keep fit, and had the muscle tone to show for it. He had a bit of chest pain 5 minutes before, then keeled over.

It’s not fair.

I took my clothes off carefully, keeping the dirt off me and turning them inside-out before dropping them in the laundry. I washed my hands and arms to above the elbows. I used to do that on coming home from work, every time. But I’m not able to work, and those weren’t scrubs.

I have some additional prayers to make now, and a body of my own to manage.

I have to move slowly, and stay happy, to the extent that that’s possible. There’s nothing else that could possibly help, because I’m no longer in the ER. I’m a 13-year veteran of the worst pain disease known to medicine, and I helped do CPR today.

I wrote this in the hope of coming to some conclusion that would make it easier to move on from this shell-shocked state of mental mumbling. I haven’t, yet… but let me add one thing.

This man had every chance, once he went down. CPR was started within a minute. The ambulance arrived within 5. He should be getting definitive care within 15 or 20 minutes of hitting the dirt. This is how it’s supposed to go.

In honor of this man who was given every chance, and in honor of my father who never had any, please learn CPR.

Even if your bones are too frail, as mine are, you can still provide the extra push that’s needed.

Even if you can’t risk infection from someone else’s fluids, you can still check for a pulse while others do the dirty work.

Even if all you can do is puff your chair a little closer, you can still direct the able-bodied, because it really helps to have a cool head looking over the whole scene.

Please learn CPR. You’d be amazed at what you can do with it. Those of us with disabilities get too much of the message that boils down to “can’t”, but when it comes to working to save a life, if you know the protocol and what to look for well enough, then there’s usually a “can” that you can go for.

I gave the police my name and number, and I hope to find out if our guy made it. (NB: Details were changed to protect his privacy… but I’m sure prayers and meditations and good thoughts will get through just the same.) I’ll post a comment to let you know.

In the meantime, here are a few links.

My ANS is going to be vibrating for awhile. I’ll start with lemon balm and see what else I can remember to do.

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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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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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Isy’s principles of blogging 101

Quite a few people I know are going into blogging. Most of them are CRPSers, all of them are clever and interesting, and I think that is terrific. I couldn’t find a Blogging 101 that wasn’t oriented towards cashcow blogs, so I figured I’d better write one.

Each writer who writes as themselves is unique, and the more of us who write truly about CRPS (or whatever we struggle with), the more others will begin to understand what’s really at stake when we talk about managing and even curing it.

The more, the merrier!
The more, the merrier!

First, let’s knock off some assumptions…

What it isn’t

– A blog post is normally not a chapter in a book, or a news article, or a short story — unless it is. If you’re posting any of the above, it means you’re writing a particular sub-category of blog, which is a good thing to be clear about. (Generallly, a blog is a place to work out ideas which subsueqently turn into books or articles, we’re writing for.)

– It’s not a journal. Generally, it’s creepy people who want to read other people’s journals; most of the rest of us are uncomfortable with that feeling.

– With that in mind, writing a journal entry before writing a blog post can really help deliver a punchy, powerful blog post.

Then let’s talk about the almost unlimited potential…

What it can be or do

– A great place to work out ideas that later go into books, articles, and so on, with more focus and a better understanding of the audience. The interaction and feedback you get on each nugget of thought is a great way to learn how to tune your writing and make your ideas clearer.

– Pre-marketing. When people love your blog, they’re liable to be interested in any work that comes out of it: books, articles, even speaking tours or movies.

– Wonderful way to connect with people in your target group, the group of people you want to explain things to or share things with.

And now some basic guidelines…

What a good blog usually is or does do

– Each post has one or two main points. A post is a limited space, oriented towards people with not a lot of time — either because of work, attention span, or memory issues. Keep each post to the point.

– Short posts get read more. Kinda sad, but true.

– The above is a good reminder to keep the writing “tight”, that is, no needless words, no needless sentences, and no needless paragraphs. (Another reason why journaling is so helpful — we can get the need to gnaw on an idea out of our systems, so we can step back and deliver it more tightly and strongly in less space.)

– Be particular about which posts get long, and keep them engaging to someone outside one’s own head. Extended metaphors or an underlying plot can keep people reading.

– Serious stuff matters. Humor keeps people reading. The two often go together really well, or at least can take turns gracefully.

– Keywords/categories/tags (the terminology depends on the blog host) are important. They help people find your blog online, so choose terms that people are likely to search for.

And finally…

Further tips and suggestions from my experience

– As I have to remind myself now and then — my readers are people outside of my head, not in here with me 🙂 This helps me explain and unpack when my first impulse is to be telegraphic; it also keeps me from belaboring a point that’s bothering me more than it would bother someone else.

– I get a lot out of watching the director commentaries on good/entertaining films, especially if there are director commentaries on the deleted scenes and outtakes. Hearing how they chose to eliminate much-loved or super-cool scenes in service to the overall piece, is like a mini-workshop on creative structure and knowing what your priorities are. Most notably, the concept of eliminating “repeated beats” is key to keeping my blog posts solid. I’ve deleted some great lines, but they aren’t missed. It took awhile to realize that, if they won’t be missed, they aren’t needed.

And now for a practical note…

Choosing a setup for blogging on

If you have access to a server and a web geek, read no further. You’re set. Just do what they advise and ask for any help you need.

If you’re totally new to all this, it’s not crazy to go to http://blogger.com, set up a Google account if you don’t already have one, and go through their step-by-step process for setting up and customizing your blog. The upside is, they really protect you from spam and thin out the hacking issues. The downside is, once you’re hacked, you’re hacked. They don’t seem to have a way of letting you build in extra protections.

If you have some geek skills and can get access to a server or hosting service, you might prefer http://WordPress.com to build your blog site with. It’s highly customizable and you can choose from plenty of forms of protection, which you can alter, tune, and change as you like. Downside: the spam is horrific. Upside: You can always upgrade your hacking protection.

There are a growing number of options, but I’m describing what I know and have worked with myself. Hope it’s helpful.

Happy blogging 🙂

Link list

Predatory mis-links are so common now, I aim to be more diligent about providing lists of the links I actually use in my blogs. That’s not a bad tip, actually, and it was first suggested by one of my readers 🙂

  1. Writing Like Yourself, by yours truly
  2. Blogger.com
  3. WordPress
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Rock stars

As many physicians have noted, treating chronic pain is peculiarly frustrating. Therefore, treating a pain condition as subtle, complex and intransigent as CRPS must be heartbreaking — though it’s never as bad as having it.

Don’t get me wrong
If you say hello and I take a ride
Upon a sea where the mystic moon
Is playing havoc with the tide

Most of us live in countries where there are practical limits on who we can see for care. Since there are few CRPS experts to start with, this tends to put us in tight spots.

So, meeting a new doctor, as many of us have said privately, is a bit like being a bride in an arranged marriage in a backward society*: you have no idea how you’ll get along, but this person is not only going to have a significant role in defining your life for the foreseeable future, but can torture and even kill you without any fear of the law.

14 year old bride with lowered head and sad, helpless expression, standing next to an elderly man who peers at her as if she were a new car he was looking over.

It sounds dramatic, but that’s the bottom line. Think about it for a minute…

For one thing, nobody likes being in so vulnerable a position. For another, we’ve all paid the price for some practitioner’s ignorance or intransigence, somewhere along the way. The fears are not theoretical; they’re real and appropriate.

Suddenly the thunder showers everywhere
Who can explain the thunder and rain
But there’s something in the air

Add to that the fact that chronic CRPS tends to hot-wire the fight-or-flight mechanism, and you have to realize that the doctor is facing a situation that requires about a million times more tact and respect than they ever learned in medical school.

Don’t get me wrong
If I’m acting so distracted

And then there’s me.

I used to be an RN, so I can use med-speak fluently and, more to the point, I’ve got the background to understand the scientific material I read when it’s time to explore a new facet of this condition.

I was dealing with a full-bore case of ADD due to the mechanical and chemical damage of chronic CRPS. At the time, I wasn’t sure what to make of my psychiatrist, Dr. Todd Hutton. He’s so quiet that I simply couldn’t get a bead on how much attention he was really paying to what I was saying.

I was beginning to suspect that he was at least awake, which is a huge bonus in my book… But I had to have my duckies in a row, just in case.

Don’t get me wrong
If I split like light refracted
I’m only off to wander
Across a moonlit mile

Everything about CRPS goes off in different directions, so studying it is like working with refractions.

I studied up on the nature of the brain oddities that characterize ADD.
candleburn-1
Figured out where they overlap with the brain damage caused by chronic CRPS.
Sketch of brain, with bits falling off and popping out, and a bandaid over the worst
Then it was the neurochemistry.

candleburn-2

I have the neurochemistry of CRPS pretty well nailed, and found that, again, the overlaps with ADD were astounding.

How much of that awful, crippling fog we call “pain brain” is a treatable form of acquired ADD?

Do we really have to live like that?

I might be great tomorrow
But hopeless yesterday

I’m not so sure any more.

Then I looked at treatment modalities for ADD.

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The cognitive-behavioral stuff — like structuring your day, having contingency plans, staying in charge of your emotions, and creating ways to check yourself and to take care of yourself when things go wahooni-shaped — are pretty much identical, though CRPS adds a lot of material about pacing, communicating about functional and pain levels, and managing physical limits.

The pharmaceutical stuff has some interesting overlaps, too.

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Aside from narcotic pain control (which isn’t much good to many of us), treatment for CRPS neurochemistry tends to focus on serotonin, norepinephrine (noradrenaline), and dopamine; treatment for ADD neurochemistry tends to focus on epinephrine (adrenaline) and dopamine.

More overlap, or is that just a coincidence? Hah! No such thing, when we’re treating the brain.

So, after traversing my “moonlit (or candlelit) mile” of research, I showed up at the psychiatrist’s office with the following info:

  •  It’s probably related to the CRPS. (Nod.)
  •  It’s probably treatable. (Slightly qualified nod.)
  •  I can’t have Adderall, et alia, because my heart is dicky enough as it is. (Firm nod.)
  •  I could face Ritalin, et alia, but I’m already on Savella, which also boosts dopamine. (He shrugged and said, “Same molecule, different location.”)

After a bit more backing and forthing, he said, “How about Provigil?”

I’d seen a friend get hooked on it, so I didn’t leap out of my seat, but we talked it over. His reasoning was faultless. (Something I almost never say.)

More than awake, he was really engaged with my case. So I took the leap of faith and said I’d try it.

Trapeze_artists_trimmed

He said he’d supply me with samples of Nuvigil (a longer-acting form) since the maker no longer supplies samples of Provigil. (Pharma companies only provide samples of what they still have under patent. They’re in it for the money, remember…)

Don’t get me wrong

If I come and go like fashion

I had the singular pleasure of going in for my follow-up, dressed professionally for a change, and reporting that:

+ I had enough energy to get outside and move around nearly every day. This means laundry gets done, there’s proper food in the house, and I can get some of that so-necessary exercise.

+ I had enough focus to put together a settlement offer, which the insurance company accepted. (WOOT!)

+ I could change focus at need.

+ I was driving better, thinking strategically and more able to pay attention to what was going on around me at high speed.

+ I could sleep better, because I’d been properly awake and engaged during the day. (OMG!)

– My anxiety was no worse, but when it did kick in, it was harder to get it to chill. That was one drawback, but not a major one.

– Nuvigil tends to build up in my system, until suddenly I can’t sleep at all. It took about 5 days to clear it after that. So now I take half a tablet (that is, about 75 mg) every other day. That works quite well.

+ It’s not perfect — it’s not like being well — but I’m so much closer to being myself that I can actually think about what to wear again. (I used to be kind of a fashion plate, in the intersection of classic, practical, and colorful, with a dash of steampunk.)

 

I told him, “Love and the relationships I have make life bearable. But being able to think, and be productive, and learn things, and get some work done, THAT’s what makes my life worth living. This is giving me my life back. I’m really grateful.”

If I hadn’t grown up in New England (land of the unspoken), I might have missed the slight lengthening of his spine, the slight lifting of his head, the slight brightening of his face, the tiniest lift of a smile.

For once in my life, a doctor of mine got to feel like a rock star.

It might be unbelievable
But let’s not say so long
It might just be fantastic

I got into the car and drove away on a shiny September afternoon in Pasadena.

On the radio, Chrissie Hynde was belting out,

Don’t get me wrong
If I’m looking kind of dazzled

And it put the seal on everything.

For a moment, I tried to stifle the beaming joy that shot through me. Then sanity intervened.

glee

What I wanted to do was pull over, slap on a headset, and dance on the glittering lawn in front of City Hall, arms wide and the sun sparkling through my starry lashes.

I wasn’t sure the police would understand, though.

Instead, I danced in my car, grinning fit to split my head, bouncing my red SUV to the Pretenders.

Drawing smiles even in LA traffic.

Sometimes, the only right thing to do is dance.

Big grinning woman in spectacular Hawaiian ceremonial dress dancing with her arms
Photo: Joanna Poe in Honolulu

 

Here’s the whole song. At first, I thought the visual story, with its false leads, dead ends, and triumphant ending, was distracting — then I thought about it for a second… 🙂

* Common sense note: obviously, not all societies that practice arranged marriage are backward. I know too many couples who have an excellent partnership and tons of love between them, who were picked out for each other by their nearest and dearest. It’s not arranged marriage that’s the problem, but those situations where there’s a lack of choice and utter helplessness of one partner. That’s what’s backward.

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Imaginative experience and rebuilding the brain

In 1986, the course of neurologic treatment changed forever when Mark Block, one severely spine-injured young man, chose “imp-possible” over “impossible” and, every day, spent hours imagining how it would be to walk again, imagining his “wires” getting hooked back up again, riding a wave of inner certainty that can only be called a gift.

 

He mentally rehearsed endlessly. Day after day after week after month.

 

And then, months into his care, he told the nurse, “Watch this,” and made his foot twitch. The first nurse dismissed it as a spasm. The second or third nurse got the doctor.

 

The doctor stood over the foot — really close — and said, “Do it again.” Twitch.

 

“Again.” Twitch.

 

“Again.” Kick.

 

One of the great moments in medicine.

 

Upon discharge, he walked out of the hospital.

Some of the meditations from my pain psychologist are visualizations. They’re made for a mass audience, not for people with chronic illness generally or CRPS specifically, so a certain amount of tolerance with the language is required. (At one point, the narrator says, after a pregnant pause, “Looking good.” Oh for heaven’s sake.)

Fortunately, she’s dropped pearls of wisdom about what’s important in these exercises, so I’m (naturally) mulling over a new set of scripts which attain those ends a wee bit more gracefully. (Of course, the files will be freely available to download.)

The key point is, it’s important to imagine what it feels/looks/smells/sounds like to be really well, really functional, really active, really smart again. Here’s the lowdown:

  • It’s not just a set of images, it’s a multisensory experience that I imagine as clearly as a good memory.
  • It’s important to do so vividly and frequently.
  • It’s important to think of imaginative experience as a good working hypothesis, rather than a hopeless quest or pointless daydreaming.

That’s key. Making it seem real, and not dismissing it afterwards. Over and over again.

That’s how the brain is persuaded — molecule by molecule, link by link, cell by cell — to give up its current structure, which pins so much of the neuro-anatomical, neuro-chemical and neuro-endocrine dysfunction in place.

Then, in many cases — and with suitable support from nutrition, psychological care and physical activity — it’s possible to reverse-engineer a healthier, more functional neuro-setup.

It takes time. It takes dogged persistence. It takes a vivid imagination — which can be developed, if it’s not already there. (Like getting to Carnegie Hall: practice, practice, practice.) Last but not least, it takes a smidgen of luck.

The imaginative experiences, if all goes well, help your neurological structure leap the chasm between what it is and what it should be. It’s an enormous leap of faith to get started, let alone keep going for as long as it takes to rewire such an astoundingly complex structure.

Of course, inner resistance and outer events are liable to leap out and knock us off track, because that’s what they do… and we have to find ways to pick ourselves up and dust ourselves off and get back on track as soon as possible.

It’s a huge job, inside and out — all that leaping.

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But it’s not impossible.

I’ve been mulling experiences that I can imagine failing to do with my current body, but remember doing with my healthy one.  I think I’ll write them out (word-painting at its most precise) and build really great imaginative experiences to come back to, again and again.

Running; sailing; riding; studying; traveling; writing complex books; lecturing on neurology, pain, and healing — you know that’s what I’m thinking about.

What would your imaginative experiences be? What would you leap the chasm for? What could you immerse yourself in, week after week, month after month, maybe year after year, for the chance of pulling yourself up to it?

It’s an interesting question, isn’t it? I have a feeling my list will change with time. As I sit with these imaginative experiences, I’ll see which ones really keep on giving, and which ones were better in theory than practice — and, of course, I’ll find the one I haven’t thought of yet, which will turn out to be key.

At the moment, the hard part is coming back to reality afterwards. That can really suck. But there are ways to deal with that — instant distraction, for instance — and the more I think it over, the more I think it’s worth it.

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