Mental toolkit for overwhelming times

As I’ve said before, much of brain-retraining has to do with speaking to the primitive parts of the brain in ways it can’t ignore.

Being overwhelmed is very common these days. So, this tool is helpful for far more than just  my fellow painiacs. I originally laid this out for someone else dealing with very different issues, and realized as I did so that it was a darn good tool and I’d have to remember it for myself. It has already been a help to me, so I hope it helps others as well.

The State of Overwhelm

I can tell when I’m in the state of Overwhelm because life is just a big old mess of decisions and problems and unresolved issues which are so toweringly massive they stop making sense. My usual ability to sort and prioritize and manage information freezes up, and my brain skids off into the ditch.

pencil and ink wash drawing of WW 1 red cross van sliding backwards off a mountain road

Once I’m in Overwhelm, it’s unreasonable to try to reason my way out of it in my usual way. Each thought is blocked by half a dozen issues backed up against it.

I’ve got to simplify. Not just that, but I need to SUPER-simplify — break it down into binary questions — that is, questions with only one of two possible answers. It’s the only way I can start managing the pile.

(What follows is a technique used in several disciplines. I’m avoiding jargon and simply using the words I use in conversation.)

The roadmap out of Overwhelm

When I was rebuilding my credit, the first thing to do was to figure out what I really owed, and what someone else was supposed to pay. This is a good template for dealing with Overwhelm.

First, whose job is it, really?

When I get overwhelmed, it’s hard to tell what’s my responsibility and what’s really someone else’s. It feels like this:

white box with orange speckles throughout, with the words "my job" on the left and "someone else's job" on the right, with no barrier between them

All the jobs are kind of muddled around in the space and there are too many jobs and not enough space.

When I draw a mental barrier between the two, things suddenly start to clear up:

plain white box, with a line down the middle. "my job" in left part, "someone else's job" in right part.

Notice that, at this point, I don’t need to know who the “someone else” is; the first step is to be clear about whether it’s my job or not.

Managing my care?

my job slash someone else's job box, with my job illuminated and someone else's job darkened

Ordering tests and prescribing meds?

my job slash someone else's job box, with someone else's job illuminated and my job darkened

Testing those meds on my system, tracking their benefits and drawbacks, and updating the prescriber?

my job slash someone else's job box, with my job illuminated and someone else's job darkened

Keeping the dishes clean?

my job slash someone else's job box, with someone else's job illuminated and my job darkened

Keeping the outside steps de-iced?

my job slash someone else's job box, with my job illuminated and someone else's job darkened

(It’s my one outdoor job, and my partner does everything that I can’t and a lot that I shouldn’t, so I bundle up and take care of the steps without a whimper.)

Second, is it something volunteers can do or is it a professional job?

This is an important distinction.

binary box, with "volunteer job" on left and "professional job" on right, with bar down middle dividing the two

When in doubt, upgrade.

Volunteers

Take care not to abuse the skills of your volunteers. You may know lawyers, counselors, accountants, and so forth, but that doesn’t make it right to ask for free professional services from them, except under unusual circumstances.

If those who help me out aren’t being paid (either by an agency/employer or by me), then they’re a volunteer, regardless of the skills they have.

I tread as lightly as I can on my volunteers. It’s an important long-term goal not to alienate them, but to keep them comfortable with me and happy to stick around.

Professionals

The corollary is, I have high standards for my professionals, and hold them to those standards with all the clarity-with-courtesy I can manage. I have no hesitation about firing someone who consistently fails to measure up.

I put a lot of legwork into choosing my doctors. Here’s an overview of the process and links I used a few years ago: How I find my doctors

It’s certainly worth the time and effort to find good people who can do justice to your life and your needs. The question is whether you can find the slack. I hope so.

Examples

Fix the heater?

binary box, volunteer/professional, with professional job illuminated and volunteer job darkened

Put us up for a night until it’s fixed?

binary box, volunteer/professional, volunteer job illuminated and professional job darkened

Give hugs, tea, and sympathy when I’m recently bereaved?

binary box, volunteer/professional, volunteer job illuminated and professional job darkened

Train me in how to get my brain to reprocess deep pain (and the staggering scope of loss associated with it) without short-circuiting?

binary box, volunteer/professional, with professional job illuminated and volunteer job darkened

This is definitely not for volunteers; too much knowledge about neuropsych and too much investment of time is required.

Professional level brain & mind care

For some things, talking to a friend, doing something strenuous, or meditating a lot, is enough to allow a person to heal heart and mind. Life itself is generally a good therapist.

Some things are too complex, too deep, or too dangerous for amateurs. Despite our longstanding social taboos, people with recurring trauma (like central pain or abusive relationships) or PTSD (like survivors of war or child abuse or those who’ve been through worker’s compensation or disability applications on top of a devastating condition) are right and smart to get highly-qualified care for resolving the damage that these things do to our minds and our brains. The damage is not imaginary, and sheer force of will is not a great tool for healing it.

Sketch of brain, with bits falling off and popping out, and a bandaid over the worst

It CAN be healed, even the worst of it. It does NOT require chewing over the past; in fact, that’s often avoided in modern trauma counseling, because that can do to the PTSD brain roughly what our recurring pain does to  CRPS brains.

Line drawing of brain, including medulla, sliced near the middle so the lacunae are visible.

Some techniques DO re-map and re-train the brain to make room for more stability, more healthiness, and move even a CRPS’d brain closer to a normal state.

Less pain! More joy! Less instability! More abilities 🙂

Some keywords for finding relevant mental health professionals: trauma-informed, PTSD, pain psychology. These are jargon terms that usually indicate the professional understands how these profound experiences affect our brains, and how that can be rewound or reworked to a better state.

Another thing you can do

It helps to vote for legislators who see the value in health care, including mental health care. Conservative estimates say that each $1 spent on care saves between $10 and $100 in downstream costs (ER visits, health costs, police activity, lost productivity, lost wages, family impact, etc.) Middle-of-the-road estimates place the savings much higher.

Something to think about, in times like these.

Find your legislators here and let them know what you think:

  • In the US, here’s where you find national, state, and local legislator info: www.usa.gov
  • Canadians, here is your national parliament contact info: http://www.parl.ca/

Please feel free to add contact info for elected officials in other countries in the comments below. It has become clear that voting is a health-care issue.

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When I lose everything but me

This is one of several blog posts I drafted late last year and got distracted from.

This isn’t the duckiest or most amusing one to read, but it’s so important for so many that I’m posting it anyway. (My mother will probably want to give this one a miss.)

This level of fundamental-ness has a certain appeal in the depth of winter.

Fortunately for me, I don’t have too much trouble with existential questions. At a certain point, when everything I thought defined me had been blasted away, and in my mind there was not a single structure left that held a fragment of my old self, and all I saw stretching away to the mental horizon was blasted mud and broken stone and shapeless lumps and rot… I asked myself, “None of ‘me’ is left. Who am I?” And I realized that something was standing there, doing the asking.

That was my answer: I’m what is left after everything has been blasted away. I’m the immanent awareness, unable to be seen or described, simply because only less-permanent things can be seen or described.

As I think about that last sentence, I realize why objects lost their fascination for me. It was weirdly easy to get rid of gorgeous and glorious things I could no longer afford to keep. A couple of them I still miss, like my old bedstead (birdseye maple, passed down from my grandmother), but very few.

Things did get worse for awhile, and only curiosity kept me alive. (I simply had to know how the story went.) It propelled me through the work of surviving when my body had failed.

Angels appeared just before it was too late — several times; my life was a solid group effort — and eventually I fled the area and got my disability check (yes they were related) and could afford to survive. I have some photos that seem ethereal still, I look so nearly gone, smiling back from the edge of the grave, happy I don’t have to take that last step.

me_wrysmile

As usual, lately, I’ve wandered off-course.

My ability to track a tale (remember I survived the impossible because I had to see how the story went?) is enfeebled. It’s barely tottering along on one of those cumbersome canes with 4 feet, too heavy to lift and too necessary to leave behind.

I grind to a halt in my post, forgetting what I started this for, but this time, I’m letting you in on the secret. This blog is not retired, and being incapacitated has not excused me before, as a flick back would show. Or even when I was blowing bubbles.

I’m approaching this winter with the determination that it will be different than the last, which was an endurance exercise — one that went on for 9 months, as Spring never sprung and my Summer was clouded by meningitis.

So far, I’m getting more physiotherapy, more outings, and even have a weekly pain group I meet with. The higher level of activity is key; because exercise is so important for healing and supporting the brain, I have to find ways to stay active, despite the obvious drawbacks for someone with roaring sensory and cardiovascular issues to leaving the house during a New England winter.

I’m pleased with that. Yay, me!

Now for the other part.

Too much exercise is poisonous, because I have a solid case of exercise intolerance. I can safely walk less than a mile, which really irritates me. It takes that long just to warm up!

Also, drawing and sketching is back to being hard work. For awhile there, sketches flew out from under my pencil like they’d been crowded in there too long. Now, it’s stick figures with bad hair. I draw anyway now and then, because it’s better to keep trying than to give up altogether.

I don’t want to exercise too little or draw badly, but I do it anyway. Why? Because there’s always an afterwards, and I still have to work on influencing an “afterwards” I want.

Meanwhile, as my ability to juggle logistics is holding ground, my ability to juggle language is slipping.

After I was a nurse, I was a writer. Before I was a nurse, I was a writer. I started calling myself a writer before the age of 10, and started rescuing and healing animals shortly after.

George_Goodwin_Kilburne_Writing_a_letter_home_1875

I’m crashing into the stupefying question: “What am I, if I’m not a writer?” I feel like nothing without that. I feel like an intrusive blob of snot on the face of the earth, out of purpose and out of place and not very pleasant to have around.

My immanent awareness looks on as my sense of self weeps helplessly. It is what it is. I am what I am… whatever that is. That will always be true, even as everything else changes.

Meanwhile, though my strength and endurance are rather better than I’d hoped, my blood pressure and pulse are less stable. One more set of variables (or issues) to chase down, one more group of tests to orchestrate, one more set of diagnostic efforts to get through, one more possible adjustment to my regime to figure out, integrate, and absorb.

By the way, that lower abdominal pain has no treatable cause. Nothing to be done but roll it into the bundle of issues (or variables) to manage and work around. Every. Freaking. Day.

This is what it’s like for me to head into winter.

A cousin and I promised each other that we’d live forever until the day we die. That agreement still stands, but gee whiz, could this be a little less tiresomely complex??

Update: And here I am, 2 months later, writing again. Still waiting for drawing to come back, though.

Digesting my food is hard work now, again. Always something.

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“Best Christmas in years”

J’s experience of the holiday of loving and giving was one of manipulating and threatening for a long time. He doesn’t say that, of course; it takes detective work to glean the data from the clues he drops. He doesn’t reflect on the past, but it does tend to cast shadows into his present.

After last year, when I’d kept the holiday out of our home and opened my gifts in private, he said — to my surprise — that he’d like maybe a little bit of decoration and festivity next year. Not the commercial garbage, just a little light.

This year, I put redwood swags tied with burlap bows against the fence and draped a green swag of redwood across the trunk outside.

I picked up redwood cones, which are tiny and exquisite. I dipped them in penetrating epoxy to make them sturdy and non-porous. Then I painted the tips in copper or gold paint, and where I had twin cones on a single twig, I made one of each.
redwood-cones_decorated
On Christmas Eve, I made lamb kofta that turned out better than any I’ve had in years. It was the first solid food J had had in almost 2 weeks, and he ate half of it in a few hours. It went down well.

We’d gotten new flannel sheets. I dressed the bed in a brighter, perkier version of Black Watch plaid, fresh and soft and soothing.

That was enough preparation for me, clobbered by the worst humdinger of a cold I’ve had in years.

Then Christmas day dawned, sparklingly bright and crisp. Once he’d had coffee and I’d had tea, I made blueberry pancakes (recipe below) which he told me were the best I’d ever made.

We noodled around the house and yard all day, warm and content. I opened my gifts in the living room (he’d gotten and opened his earlier.)

I made a leopard-print minkee shawl for his dog, who has been swanning around ever since, clearly feeling as breathtakingly stylish as a modern Grace Kelly.
dog_shonie_elegant
The satellite TV was out, but I figured out how to connect my computer to the new TV and stream Netflix on our gorgeous HD screen.

Like many people, he has deep scars from mainstream religion. When he started climbing down that rabbit hole, I told him the history of the Christmas holiday, which dates back thousands of years in Europe. People collected under the largest available roof for the armpit of winter, keeping warm and entertaining each other, and those who had more shared with those who had less. Everyone got through better together than they would have alone, and familial and social bonds were reconfirmed ahead of another year of hard, often lonely labor. When the Church moved into Europe, they moved the celebration of their Savior’s birth from springtime to a few days after Yule, because the good ones loved the season of warmth and sharing and the scheming ones could spot a good opportunity. (I told him that the 3-day margin gave people time to sober up from the Solstice bonfires and clean up in time for Church.)

That isn’t about faith, just about historical data. Belief creates its own reality, and I respectfully support everyone’s right to choose and structure their own beliefs. All honest forms of worship make the world better, in my view. Amen.

The history lesson took the sting out of Christmas, and the last detail made him laugh.

After a week of prostration with that awful cold, he actually got up and washed all the dishes. The kitchen was sparkling by bedtime. It’s the little things that really tell you.

From about dusk on, J kept saying, “This is the best Christmas I’ve had in years.”

Something tells me they’ll get even better.

Recipes

These are Isy Recipes, so they don’t have too many ingredients or too many steps, and every ingredient has something fabulously useful about it.

Pain-cutting Pancakes

2 bananas, mashed
2 eggs, beaten
1/4 cup flaxseed, ground
1/4 coarse raw sugar
1/4 package Boreal blueberries

Beat everything together and let it sit while the pan heats to medium heat or slightly lower. These cook low and slow, not like flour pancakes.

Pour the oil off the top of your almond butter into the pan. If you don’t have that, use safflower oil. Either one makes a wonderful crispy edge.

Spoon the batter into the pan about 3-3.5 inches (5-6 cm) across and up to 1/4 inch (.75 cm) thick. If you’re using the almond oil, they may fizzle and make white foam with a lovely scent. Cover the pan. It takes at least 5-7 minutes for them to cook well enough to flip in one piece. Cook the other side for slightly less time. Serve with Kerrygold butter and non-osmosed maple syrup, if possible 🙂

Kofta Kebab

1 pound (2.2 kg) ground lamb
2 eggs
~2 tsp natural mustard
2 handfuls of finely chopped spinach (I couldn’t find the parsley)
Spices:
Lots of ground cumin
black pepper
1 tablespoon (scant palmful) basil
2-3 tablespoons parsley (I found it)

Mix everything well with your clean hands. Heat 1/4 inch (.5 cm) of grapeseed or olive oil in a frying pan over medium high heat, hot but not smoking. As the oil heats, take small handfuls of meat and squish them into a lozenge shape, laying them out on a plate or board. Drop them into the pan, one batch at a time. If you made the lozenge shape rolly-polly enough, you can roll the kebabs over in the pan. Only turn them once; more often and the meat gets tough.

When they are crispy gorgeous dark amber, scoop them out and lay them on brown paper to drain. Eat with your fingers if you can’t wait, like me, or with ketchup if you’re a total yahoo, like J.

Lamb has lots of zinc, which is good for fighting off viral infections.

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My guts are gallivanting

The past few weeks have been… interesting.

me_wrysmile
Oh, dear.

I seem to have gastroparesis, because after every bite or two of food, I felt like I’d swallowed a cannonball, I’d still taste it up to five hours later, and even the thought of food made me nauseous.

At the same time, I seem to have wasting syndrome, because the other end of my GI system was working double-time and overtime. I was exploding on the toilet long after there was anything to explode with, whether I had eaten or not.

Toilet stall with graffiti covered with brown, yes, brown paint
It’s not what it looks like…

The weight loss has been a boon to my knees and hips, but the ground-in weakness is annoying.

The usual treatment is a “low-residue” diet, a shameful pile of poor nutrition and monotonous eating, consisting largely of things that I’m allergic or sensitive to — and steamed vegetables, which I can usually eat by the plateful, but can now barely manage a bite of, they’re so heavy with water.

I thought it over.

The Thinker, Auguste Rodin
Rodin’s “The Thinker”, looking very apt.

Both gastroparesis and diarrhea indicate an intestinal lining that is starving for antioxidants, and probably inflamed. Therefore, anything I eat is going to have to have antioxidants, because that is first-line treatment for tissues starved for antioxidants. Many antioxidant-rich foods are anti-inflammatory, so it’s useful for me to lean towards those.

The sluggish-to-trudging pace of intestinal motion, or peristalsis, is liable to under-stimulate the release of digestive juices, so anything I eat had better be easy to digest — or, better still, partly digested already.

Since I could only eat one or two bites at a time (and still feel rather ghastly afterwards), every single bite — in terms of both nutrition and flavor — had darn well better be worth the trouble of eating it!

Woman with eyes closed about to bite a cherry
Fabulous cherry by Jiri Ruzek.

I’ve been interested in good food since forever. My mother has been an outstanding cook all my life, and time spent helping in the kitchen was never wasted. She’s always been good at shoehorning a bit of extra nutrition into something in a way that improves the flavor. Dad would eat anything, so failed experiments were never wasted.

Because of my upbringing (traveling widely with a good cook on one side and a walking disposer on the other) I’m a fearless cook and a promiscuous eater, happy to try anything from anywhere, as long as it’s good in both senses of the word.

Earth with Place Setting. Photo of formal place setting from Hopefulromntic, images of Earth and Moon from NASA
Photo of formal place setting from Hopefulromntic, images of Earth and Moon from NASA.

On my sudden return from abroad in 2006, terribly weak, badly sick with CRPS, and having my heart broken in umpteen pieces by the most traumatic, trouble-ridden, devastating trip of my entire life, I found sanctuary with my friend L and her family. It took ten days even to notice which end was up, but then L said, as I snacked on something homemade from a jar, “It’s normal to eat a lot of raw food when your system has been deprived for so long. Give it another week and your appetite will get more normal.”

I considered being embarrassed, but I was too busy absorbing the impact of what she had said. I had heard her talking about “raw food” since I’d arrived, and I understood it meant cold-processed food that was carefully jacked to boost its nutritional value and digestibility.

I didn’t realize I was devouring it on an industrial scale.

backhoe, by Antti Leppänen
Veggie-loving backhoe by Antti Leppänen.

Knowing what I know now about the devastation at the cellular level that this disease can wreak — and the depth of disruption that even occasional trauma can cause, let alone a relentless, months-long parade of traumas — I’m not surprised. At the time, I found my attention sinking deeper and deeper into my body, and noticing a curiously profound ravenousness that only L’s un-cooking seemed to satisfy.

It actually took four and a half weeks… of grated beets lightly marinated in balsamic vinegar; young spinach dressed with fresh lemon juice and flax oil; pepitas dried with tamari and spices; crispy sesame-kale flakes; yogurt made from sprouted cashews; homemade nut milk; juice from apples picked an hour before they met their fate; tomato-leather from the garden’s surplus, stowed in the deep-freezer to make tomato paste and soup base in the winter. It was a feast of discoveries, or a discovery of feasts.

feast of beautiful food, most of it raw
Beautiful feast photo by Incase.

At that point, L asked if I’d mind kicking into the grocery budget. (I turned bright red, smacked my foggy forehead, and started taking my turn at the grocery store.) I did my feeble best, but I’ll never be able to pay back the real value of what they gave me, in terms of sustenance for the body, balance for the mind, and stability for the soul. L let me know when she had had enough of gratitude, so at this point, I just do my best to pass it on.

I recently replaced my blender, as the old one was blowing smoke, and I got a dehydrator too. In light of my nutritional status, I put them to use.

Here’s an example of the sippy-cup-sized shakes that I make in the blender…

Blender cup with ingredients for small, mostly raw, shake next to it.
My mini-shake makings, with an aperitif of bitters to get my gut to gear up.

… and the partially re-created flax-cracker recipe we’d invented all those years ago — the ones that smell like hot-dogs and taste like junk-food, and have more minerals and omega-3s than you could shake a Triscuit at. Mine aren’t quite hot-doggy yet (I used a lot of sesame), but they are, wow, really good just the same. Especially with a touch of grassfed butter, when they’re out of this world.

food_myflaxcrackers
Homemade flax-sesame cracker, with grassfed butter. Mmmmmm.

It has been almost 3 weeks, and I can finally eat a small meal once a day without significant repercussions. Also, I can be more than an hour from a toilet without fearing for my trousers.

I’m so far successfully denying the fact that the endocrine shenanigans of this disease have made it so that I can’t drop this excess weight unless I’m literally starving. I don’t think I’ve gotten above 1,000 calories per day more than 3 times since this started.

I’ll think about that later. Right now I have a sliver of raw goat-milk cheddar and a sprouted sesame-flax cracker waiting for me.

baby goats under their dam. One goat looking at us, one nursing.
Cute kids from Fir0002.
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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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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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There’s always an afterwards

When I was a nurse, I could see when death was creeping up on someone. I saw gray fluttering around the person’s edges, especially around the head and upper body. As they recovered, the fluttering grew narrower and disappeared; as they lost ground, it grew wider, sometimes growing too wide to see.

Rear view of sturdy stone angel inside a lovel stone church

When that happened, I made sure I could find the code cart, because we were going to need it.

I worked and fought like hell to shrink that fluttering, to get each person closer to life.

Not every life can be saved. There’s a dislocating moment when, after working with several others to try to revive someone, it sinks in upon all of you – neaerly simultaneously – that it’s a lost cause, and then the doctor calls the code.

Everyone steps back for a moment, same expression on their faces: eyebrows up, eyes on the erstwhile patient, mouth slightly open, every brain running through the scenario and looking for something left undone (never has been, on my teams)… pausing in the shock of rebooting.

When I was coding someone, that person was the most important thing in my world, and all of my training and experience and physical capacity was tightly woven into my determination to get them back. When I had to stop coding them, all of that intense focus, activity, and energy had to come to a screeching halt, be re-assimilated back into my reserve, and clear the way for the next set of tasks. Not a trivial job.

Multiply  that by the number of professionals in the room, and you see why there’s always a breathless pause, even in the most practiced ER.

Then we get back to work, but it’s the work of cleaning up, restocking supplies and meds, prepping the body for the morgue/organ harvesting, and clearing the way for the next incident — a gunshot wound, a bloody nose, a beaten child, a drama queen or king; could be anything.

This explains a lot about ER staff: whatever happens, however we feel about it, we have to clear it away, clean up, restock, and be ready for the most trivial or the most harrowing issues to come in that door next — with little or no warning. Then deal with that, sometimes by brutal means (which you’d understand if you ever saw a chest tube placed or helped set bones for someone who’s been beaten.) Then go home, get food down and go to sleep, and be ready to  come in the next day and do it all over again. Day after day after week after year.

Imagine what that takes.

No wonder they often seem a bit detached, a bit harsh, a bit clueless about the human impact of what they do. They have to come back to that every working day, and try to stay above the madness.

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The very day I realized I’d forgotten the human impact, was the day I knew I had to change careers. No wonder my immune system was failing. The effort to protect myself was killing me.

My dad’s death was unexpected, and happened overseas. It happened shortly after I knew I’d have to change careers, and shortly before I gave notice and surrendered my RN licensure.

I don’t think I’ll talk about it much, except to pass on the best advice I ever got about survival:

Take every opportunity to be happy, because it makes you stronger for the other times.

Less than a year later, one of my dearest friends died suddenly, back East… After that, I lost someone I loved every month or two, for just over a year… and somewhere in the middle of that, my relationship fell apart.

Hellish, tragic and harrowing as that period of time was, it turned out to be training wheels for being disabled with CRPS and all that comes with that.

It’s no wonder I have some of the symptoms of someone in an abusive relationship. I am; it’s called Life.

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And that’s what I say about it.

I’ve seen the grey fluttering around myself more often than I’d care to say. I’ve wrestled with the desperate temptation to end this brutal, chaotic nonsense for myself.

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My own intransigence saves me; no stupid disease gets to win. The very thought is intolerable. Not gonna let it happen.

US Navy: Marines of the embarked 15th Marine Expeditionary Unit practice hand-to-hand combat
I identify with both. They’re working their butts off and there’s no telling who’ll win… but neither one will cry uncle.

I’ve had to tell myself, sometimes every few seconds, “Keep breathing. This will pass. There is an afterwards. Just stay alive long enough to see it. There is an afterwards. Let’s find out what it’ll be like. Keep breathing. This will pass.”

Verbatim.

And, eventually, times like this morning come, which thaw those unspeakable memories on the warm stove of peace…

Gentle air from a misty morning caresses my mouth. Happy morning voices trickle in from the neighbors. My tea tastes just right. The birds are screaming their fool heads off in the greenery. My feline ray  of sunshine can’t stop moving for the sheer glee of being alive.

Ari-squirming

It’s simple, but it’s perfect.

I find myself glancing back at the shadows behind me, giving them a nod.

I was right. There is always an afterwards.

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The Red Pen Technique (dramatic music, please)

This is probably the simplest, most powerful tool for getting your complex care back into the realm of sanity.

It’s easier said than done, but it’s worth it. More valuable than words can say.

It’s a fairly simple 3-step process:

  1.  Get copies of your medical records.
  2.  Prepare: understand the records, get a colored pen, and stock up on post-its.
  3.  Mark it like you own it.

Here’s the step-by-step rundown of this process, with insider insights, tips and suggestions. (I apologize in advance for the clunky formatting. I’ll work on it.)

1. Get copies of your medical records

[Updated 3/2018 to reflect current trend towards soft copy documentation.]

In the US, you are LEGALLY ENTITLED to all the information in your medical chart. (Worker’s Compensation is a special case; you can still get copies through your lawyer or sometimes directly from the doctor, but don’t talk to the insurer about any of that.)

To get copies,

A. Call the hospital, clinic, or office and ask for the Medical Records department.

B. Ask what their process is for obtaining copies of your medical records. Most MR departments are honest, understaffed, and extremely literal-minded. Be clear, frank, and polite-but-not-wimpy; that seems to work well with the MR mindset.

i. Some will let you come into the office and make your own photocopies. They may charge you for the copies. Some may have soft copy they can send you on a CD or provide a secure way to download.

ii. Some don’t allow non-staff into the department and will make the copies for you (and it’s best to provide them with a list of what you want, so they don’t provide you with the usual thin, doctor-oriented version. More on that later.) They will probably charge you for pulling the record, making the copies, reassembling the chart, and packaging your copies up for you. They might fax them to you, but, if they don’t require you to come in personally and show ID, then the chart copy is usually mailed or FedExed. Soft copy may be free or cheap. Ask about the cost for each method, and if they don’t offer the method you want, ask if they can provide it anyway.

iii. Some will give you the runaround. In that case, be polite but firm, and let them know that you have a legal right to the information in your chart, so let’s figure out how to get it to you. (Never buy into a power struggle with petty power weilders. Just refocus on the goal — like with toddlers.)

iv. If you had films of any kind (X-ray, MRI, CT scan, ultrasound), ask how to get those films. You usually get them directly from the Radiology or Sonography department rather than Medical Records. They’re most likely to drop a CD in the mail for you. You’ll need software that can view DICOM images — do an internet search to find the best current free application for reading DICOM files.

The radiology departments no longer use film. They used to recycle it every 2 years, so the only way to keep those records was to get the physical films and hang onto them despite promises they’d demand to return them. That didn’t mean you were any better or that the film was irrelevant in two years!

C. Follow the instructions they give you for getting those copies. Be sure to request copies of the following:

i. Doctor’s notes, both narrative notes and forms.

ia. Consults’/Specialists’ notes. (Yes, they need to be specifically requested in some facilities.)

ii. Medication orders. This is what was supposed to be given.

iii. Medication Administration Record (MAR.) This is what was actually given.

iv. Nurse’s notes, both narrative notes and forms. (These days, some places only have forms.) These should include Nursing Diagnoses (which gives a good idea of just how worried or confused they were about you) and daily tracking of what care was needed and provided.

v. Vital signs and intake/output sheets. (Includes fingerstick blood sugars when used.) This is usually background information, but every now and then there’s a nasty surprise. There is no substitute for the clarity and simplicity of this info.

vi. Results of tests. These include labs taken from your blood, urine, stool, saliva, tissue samples, or whatever else they examined. It can include psych tests, behavioral tests, and any other test.

vii. Readings. This refers to what a trained specialist concluded from looking at your films, ultrasound, EEGs, EMGs, EKGs, and so on. It’s usually a couple of paragraphs.

viii. Rehab notes: narrative notes, test results, and forms. This is what your PT, OT, and other rehab specialists saw.

ix. Discharge planning notes. Discharge planning is supposed to start as soon as you’re admitted. These notes will tell you what they knew or assumed about your context and abilities. Very useful info between the lines.

x. List of charges. This is what they’re telling the insurance company they did for you and how much it cost. This should include pharmacy charges as well as “floor” charges. Another place to find both corroborations and surprises.

xi. If they say, “Would you also like [something else in the chart]?” The right answer is usually, “Why yes, thank you, that would be helpful.” Sometimes they offer it because they’re so detail-oriented, but sometimes they offer it because it fits into the pattern of the care you received. Feel free to ask why they suggested it or what it relates to.

D. When you get your chart copy, either scan it into your hard drive before you do anything else, or make 2 more copies and put the original (clearly labeled) somewhere safe.

Some people consider this step optional. I won’t argue with someone else’s working style or legal situation; you’re the one best-qualified to decide how protective to be of your chart copy.

I have everything on my hard drive. I have dealt with a hospital, a federal agency and an insurance company that forgot, mislaid, misread, or destroyed part or all of my chart. I don’t trust any institution to get it right any more.

2. Prepare

When your original copy of your chart is as safe as you want it to be, take a copy to mark up. This is where the real fun begins.

A. Read the whole thing over once. Try not to get bogged down — this quick run-through will help you familiarize yourself with the lingo and the special way of thinking that’s used in the health care field. It will also give you an overall idea of what you’re working with and will shine a light on the most obvious gaps — in your knowledge or vocabulary, or in theirs. Put flags in the strangest, most egregious or excitiing parts, so you can refer to them quickly. Use post-its to comment on the page.

B. Whether or not your first read-through is quick, your second read-through will be a LOT more informative. Pick out and investigate the obvious holes in your own knowledge, looking up words and concepts that aren’t clear, or checking your assumptions about what they meant.

C. (You can start doing this in 2.B., but you’ll be better-equipped if you wait until you’ve got your vocabulary and assumptions squared away.)

GRAB A COLORED PEN. Mwahahahahahahaaaa!

Red, green, dark  pink, and medium purple are all great, because they stand out so well from the black and grey of the copy. Use a color you enjoy commenting with, in a pen that feels good to write with.

No black. No grey. Blue if you must, but it’s a very “normal” color and easy to overlook.

3. Mark it like you own it

Now that you’re prepared, are familiar with the chart, have the hot spots flagged, and know the vocabulary, you’re ready to TAKE BACK YOUR CARE.

A. Go through the chart with your colored pen.

B. Mark everything that is wrong, misleading, or unclear. (Feel free to color-code, if that works for you.)

C. Comment on:

i.  what the real deal was,

ii. what was wrong with what they wrote,

iii. your own observations,

iv. any evidence or witnesses,

v. and — this is usually relevant! — where else in the chart this error, confusion or lie is brought into question. (This is why you get the nurse’s notes. They tend to be accurate, front-line reportage of what happened at the bedside.)

Generally, you can keep emotions out of it. The facts WILL tell the story, and the reader’s own emotions will fill in the blanks.  If you can do this, then you will wind up with a much more powerful piece of documentation than if you’d given into the natural urge to editorialize. Sometimes, if I’m just too mad, I editorialize (and use expletives and call names) on separate paper, then, when I’m calmer and my thoughts are clearer, I go back and write in a calmer note.

D. Write (or tabulate, or draw; whatever works for you to nail your understanding) a summary of issues with the chart.

i. Pick out major issues, overarching issues, and the points where things really should have gone differently. (If you’re writing, use headings — that impresses the heck out of people.)

ii. Summarize the whole thing in a paragraph or two at the end.

4. Now what?

It’s up to  you. You have documentation that is worth presenting in court. (Yes, believe it or not, you can talk until you’re blue in the face and be only tolerated, but if you really want to persuade highly-educated people, then put it in print — with annotations. They will believe exactly the same thing in print, that they’ll be incredulous of when you speak.)

Regardless of what happens next, you will have a whole new approach to medical care. Your perspective on the whole business will change as a result of doing this exercise. You will be much more collegial with your doctors — much less the supplicant praying for something beyond your control. You will speak about your care with more clarity and authority, and your care providers will respond to that, usually with more forthcoming-ness and respect.

Depending on the issues involved (and whether your case is already part of a legal process, such as Worker’s Comp), you can:

  •  Send a (color?) copy to  your attorney. You can always do this. It’s guaranteed to get some attention, and your attorney is liable to  respond well to the nonverbal message that this is important enough to you to go to all this effort. That’s a big deal. Most clients of attorneys are kind of helpless. You set yourself apart with this.
  •  Take it with you to your next visit with a key physician — the worst offender, or his boss, or the one who’s on your side and can help you figure out how to proceed most effectively. Be prepared to let the “good guy” take a copy, and consider bringing a copy for the “bad guy” since you don’t want to let your copy out of your hands there.
  •  Arrange a meeting with the facility’s adminstrators to address the hot issues. Take it with you (or scan copies and show it from your laptop — lots of tech assumptions there) and let them know, kindly and clearly, what you want them to do about it. Administrators tend to be goal-oriented, so give them a goal. Tip: If they have legal counsel present, it’s good if you do, too. In any case, it’s not a bad idea to bring a couple of respectable-looking friends (“my assistants/associates/posse”) who have faith in you, for moral support — and so you’re not all alone on your side of the table.
  •  Send a color copy to your local paper, your congresscritter, the medical board for your state, or the Department of Health, with a cover letter explaining your concerns and what you would like to see change. This could raise some attention, all right. (If your case is currently in a legal process, it may be illegal to do this. Ask your lawyer.)

If you’ve never done this before, you’re in for a transformative experience. Even if you do nothing further with it, your situation will feel very different, and you’ll find yourself facing future care with a stronger, clearer, more in-charge attitude.

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Is losing our minds to “pain brain” optional?

64% of CRPSers experience significant cognitive decline. Speaking as a member of that majority, I think that sucks. Most people with chronic pain find that they experience the following:

– Confusion: it’s harder to keep track of things like we used to.

– Forgetfulness: forget the car keys? We’re capable of forgetting the car. It’s more than a touch of early onset Oldtimer’s.

– Distractability: I got up in the middle of a sentence when my meditation exercise was playing. I forgot what I was doing netween one syllable and the next and I could NOT make myself lie down again.

– Locked focus: once I do get into something, it can be impossible to tear myself away, even if I need to move or stretch or calm a racing heart. It’s *weird.*

– Memory: Forgetting the car? Sometimes I forget my birthplace. There are random, shifting holes in my long-term memory that I can’t do anything about, except waffle and flannel until the subject changes. Learning anything new that isn’t related to CRPS or writing (which my brain seems to have anchored with industrial grade mooring chains, so far) is pretty much doomed.

– Intense, driving feelings: catch me on a bad pain day and discover a new word for female dog, and it’s not because I want to be like that, but my internal brakes are off and everything feels like the emotional equivalent of flashing neon.

– Oversimplifying/black-and-white thinking: this was one of the first issues we addressed in my functional restoration class all those years ago. Without constant checking, chronic pain makes everything MUCH more intense, and maintaining middle gears is a constant job.

– Poor sleep. Trouble waking up. No duh.

 

Now, just for grins, let’s look at the list of symptoms for AD/HD:

– Difficulty tracking complex ideas/confusion

– Forgetfulness.

– Distractability.

– Locked focus.

– Memory issues.

– Intense, driving feelings.

– Oversimplifying/black-and-white thinking.

– Poor sleep. Trouble waking up. Hel-lo!

 

Is it just me, or is there a wee bit of overlap here?

 

Classically, ADD (or ADHD, or AD(optionalH)D) is not considered an aquired disease. However, I noticed that the parts of the brain that ARE distorted in ADD are some of the same parts of the brain that GET distorted in CRPS — and perhaps in other types of chronic pain.

 

We aren’t making these symptons up. We struggle mightily to keep our symptoms under some kind of control, but the worse this particular family of symptoms gets, the closer it gets to impossible to keep it under control.

 

Fortunately, ADD (et alia) has been treated successfully for years. The meds used overlap with meds used for neuropathic pain, depression and dysautonomia (because it’s all about regulated nerve signaling); the techniques overlap with the techniques for handling CRPS, dysautonomia and chronic pain (see my last two posts); and the therapy follow-up ties into the fact that ongoing counselling is part of the gold standard of treatment for CRPS, and darn well should be for chronic pain.

 

This is solvable. Let’s get our brains back, because life is too short for this to be allowed to continue.

 

When I get my scientific studies lined up, I’ll rewrite this for my bioscience blog. Feel free to take it to your doctor.

 

We can do this.

 

Meanwhile, borrow a couple of books like “you mean I’m not lazy, stupid or crazy?” and “delivered from distraction”, and see if it doesn’t take a load off your mind to recognize that there IS a way forward.

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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.

Trapeze_artists_1890

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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