Controlling my descent

Admittedly, this might be one of those posts that I think is wonderfully uplifting and informative and positive and yadda yadda, and normal people have to call a therapist after reading. If it weren’t for my fellow painiacs, and the otherwise-normal people who love me and want to know how things are going, I’d probably have abandoned this years ago.

I started out blogging for myself, because I was driven to; I’ve mostly written it as a “non-scientist’s guide to living constructively with this” for the benefit of painiacs who don’t have my medical and communication background; and I’ve wound up writing purely for others, because I’m (very sweetly) obliged to. My high school English teacher quoted that freedom is choosing your chains, and the obligations of love, mutual care, and friendship are wonderful chains — if that’s not too much of an oxymoron. (Personally, I find the image a bit eye-watering, but different strokes for different folks. I’ll try to remember to think before I choose a metaphor.)

However, that’s not what I sat down to write.

Not long ago[LINK], I was in a tailspin about how to manage winter in this body, which is inevitably a bit tiresome (oh look! A flash of humor!), and looked like being more so than ever this year.

I found an old, simple, eliptical trainer by the side of the road that had a stride as short as mine now is. Huzzah! Got it home, and have been using it to work my way gently out of this exercise intolerance. I’ve gone up from 3 minutes 38 seconds, to 4 minutes 40 seconds! And that only took a month. (Look, another funny :))

I have to stop just at the point where my blood gets going and it just starts to feel warm and wonderful. That’s right, I have to stop before it gets really good. If I don’t, I wind up in a slow-motion collapse onto the sofa or bed, and have to really work at it to keep the usual disciplines of getting a shower and food and toilet trips. Since that means that appointments and groceries may not happen, it’s kind of a big deal.

I assure you, many people live like this.

For me, it’s the cardiovascular activity I have to be careful of. The annoying peripatetic noodling-around of errands and driving don’t wear on those mechanisms (though driving wears hard on my attention and I can do, at most, 3 stops for errands before my brain and spinal relays pack it in for the day.)

As I was flailing through the fog of the past month or so, my entire pelvic girdle (hips, low back, tailbone, all the joints involved) decided to lose their cool. Quite literally. I’d be putting my magic goop on the icy skin over my hips, which most women have, and my hand would go over two wide ribbons of fire over my sacroiliac joints, with zapping spicules at each disk, and great squanching bolsters of “eff you, kid, you are NOT sitting on us” right on my sit-down bones. Not cool at all. (See what I did there?)

Much physical therapy and massage therapy happened. It took awhile, but finally, some stability began to re-emerge. I asked my PT how to keep from getting off-kilter again, and she said, “It could be anything: stepping too hard off a curb, carrying heavy things off-balance. That new car of yours could be a problem.”

Ah, the car. There is a story about the car. And what a story it is! So much of a story, in fact, that it’s going to have to wait for its own blog post. It might be right up there with “Intestinal Fortitude”[LINK] for sheer WTH??? But, luckily, I wound up with a good solid vehicle that mitigates everything about driving that a vehicle could possibly mitigate. Unfortunately, it’s easily 4 inches higher off the groudn than the last one.

Talk about stepping off a curb too hard.

I also thought about the eliptical trainer, which I hadn’t been using very mindfully. I lurched from one foot to the other, and I know my hips were taking a wrenching, but I was too daffy to notice. I just, strangely, couldn’t improve my time. I wonder why!

I remember a PT 11 years ago, in my first Multi-Disciplinary Functional Restoration Program, who worked with all of us to “control your descent,” meaning, don’t just plonk your foot dodwn and crsh the rest of your weight onto it; lay your foot down, roll on in a controlled fashion, and whoa, suddenly life gets a lot better — until you forget. Real built-in motivation, there.

As sometimes happens, I stood there for a moment, staring past my current PT’s left shoulder, feeling the idea burst upon me and wash through all my current struggles: loss of partner, loss of help, added responsibilities in the house and for a cat, aging in winter with a rotten set of diseases, new injuries, etc, etc, etc,

Control my descent.

Don’t lurch onto the next step and come crashing down on it.

Stay mindful of each more; it pays off immediately.

Well, that has helped enormously!

It’s elegant and genteel, two words I never cherished but now find strangely redeeming, to pause and collect both legs before exiting a vehicle, and stepping down gently.

Believe it or not, I don’t have to do everything NONOWNOWNOWNOW. That was a tough nut to crack, but I did it with the hammer of “control my descent.”

I’ve gotten cushions I recommended to a friend with a tailbone injury [LINK?] for myself, and everything I sit in is loads better; I can rest.

As for plopping into chairs, that has gone the way of hopping out of my car; still happens once in awhile, but instantly regretted. I control my descent.

The ice and snow are doing interesting things in the driveway, and it will get dealt with, but since my amazing vehicle doesn’t mind, I have the time to prioritize and deal with it when I can do so properly. (I might get a plow attached… that could pay for itself in a couple of years, given my usual fortune/skill at shopping for bargains and finding friendly neighbors who’ll do things cheaply.) I can control the descent of that resolution.

It’s nice not to be crashing from fire drill to inferno. I’m coming back to myself — the practical, quirky-clever, loving little dingbat that still lives on under all the messes I’ve staggered through over the years.

I like the dry, mechanical nature of the image of “controlling my descent.” It gets quite emotional enough in here, I don’t need to rock the boat any more by trying too hard to push the perkiness; it’s healthier for me to just calm the upheaval. I can’t stop life throwing me up in the air sometimes. However, I can usually do something to control my descent.

Time check: must go, in a controlled and pleasantly mindful ashion, to my next appointment. I will try to remember to insert those links and maybe add some pictures afterwards. Feel free to nudge me… because I know I’m forgetful, and I can ask my friends for help ¬†ūüôā

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Service animal in training

So, here she is: my little fuzzbutt of curiosity, in a mellow moment.

Photo: Laurie B., who’s also an excellent dj.

I told my pain specialist about her, as follows:

She is turning into a service pet already: when I hurt myself, she comes and brushes against it, providing a good sensory input to help me push back against the wa-wa of pain. When I’m upset, she stops what she’s doing and comes over to comfort me, so I don’t go so hard into my body’s “autonomic fuss”: color and vital sign shifts, sudden weakness, persistent nausea, emotional instability and pain, etc. She licks softly on the most numb or paraesthetic bits: my toes and wrists. She’s extremely well-behaved in public, handles being in the carrier pretty well, and is adapting to being on leash.

We’re working on the concept of when it’s time to sleep. Those of you with cats, I heard that sardonic laugh. However, I’m feeling relieved and pleased once again that my training techniques are paying off.

I do two things, which I haven’t read about much:

1. I think about what I’m saying. House pets read emotional and mental states extremely well. Probably because of this, I find that speaking to my fuzzy-butts in plain English, and halting my internal chatter to notice and mean what I say when I speak to them, is extremely effective. “It’s like they understand every word.”

2. Wow. Can’t remember what I was going to say for the second thing. That’s embarrassing. It’s like I have pain brain or something. Just like!

So, anyway…

Last night, she was bouncing off the walls at bedtime. Sigh.

I put on the classical CD I play to let her know it’s time to settle down — twice. (Mstislav Rostropovich and Ytchak Perlman playing something deliciously calming.) Usually, that knocks her right out. Better than Valium. Not that time, though. Did I give her extra vitamins?

As she pinged around my legs, I scooped her up and explained sincerely that it’s time for sleep. She paused briefly, all furry and cuddlesome, then went “nah, but thanks” and squirmed off.

I gave up and trundled off, flared limbs throbbing, head lolling with weariness on my sore neck.

I climbed under the covers, arranged my pillows, read my “bedtime silly” book for 5 minutes, and realized I needed some autogenic-training meditation (those are the ones that include, “your limbs feel heavy and warm”) to get my feet and lower legs to warm up enough.

I ignored the squacking and mooping noises (she has quite a vocabulary) from the next room. My limbs were finally getting warm.

Then Miss Thing popped up, literally, and let me know we were going to sleep now if it killed her. O…kaaaayyy…..

She made deep biscuits, pressing hard but still not using claws, first on my right shoulder, then on my right forearm, then on my left shoulder.

Then she turned around once, slapped her head down against my pillow, and conked out, her purr fading into sleep almost as soon as it started.

OMG the cute. Much brain juice. So impressed, too.

Did you notice — she zeroed in on the key spots that triggered my condition. She went straight to them. I have to spend hundreds of words explaining these points to humans; she just dialled straight in.

She is definitely my Service Cat.

Just need to help her get calmer in the world outside, and be old enough to develop a little more poise in the face of the unexpected, because always behaving well in public is a key part of Service Animal requirements — and that amazing little fur-girl will be all set.

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This is not a triptych

I’m a writer; I think in terms of story. I assumed I’d have some definite third stage of recovery from that breakup, but no, just more process.

Not just the emotional work of disentangling two mingled lives and learning how to be in the same room and hold a practical conversation in civilized tones, and not give in either to the huge love or the awful rage.

There’s the special spoonie stuff, brought to me by CRPS/fibromyalgia/dysautonomia/Hashimoto’s disease. Learning how to get everything done every hour of every day of every week, with little help, no encouragement, no prompting or reminding that I don’t think to set up myself on that increasingly irritating & necessary phone, no underlying love to smooth the steps out or to rest in the soothing of, between efforts. With winter coming on, there is SO much to do. He has come over a couple of times to help with that. How do I say thank you without weeping?

I noticed when we first met, before we were ever lovers, that my pain and brain fog dropped when he was within about 16 feet of me. Once we were partnered, that symptom-suppression held pretty much all the time.

So now, I’m doing all this with an additional physical burden of pain and, dear heavens, so much brain fog.

It’s a process. It’s a two-steps-forward-one-step-back process… and, frankly, those are pretty boring to read about.

So yeah, it sucks. And I don’t get to stop working on it. Spoonies rarely get breaks, and never get vacation time, from being sick.

Onward.

I got a cat. She’s just over a year old, and came to me not knowing how to eat. (The irony is so thick you could cut it with a knife.) The first couple days, her hip bones kept getting sharper. A mini dog came over and showed her how it’s done. That was the first big bump forward. Her hip bones are marginally less sharp now.
She’s beginning to learn that that “I waaaaant!” feeling means she’s hungry. I don’t know how she lost track of that instinctive message, but she would sidle up to her bowl and then skitter away with a little flash of anxiety.

Drama is emotionally seductive and magnetic, especially to the young. So, that exciting pattern needed interrupting. I took up her food for hours, so there was nothing to sidle up to and skitter away from. At first, I held her bowl down to reassure her, but as she gets more settled and secure, I leave her to it once she gets started, and stay quiet so as not to distract her. I spent the usual cat-lady hours finding food she liked. (She’s definitely my cat: she likes real food, not Friskies.)

She’s quite a beauty — flared cheekbones, cute little nose, huge eyes with heavy liner, a charming overbite. A bit like Geena Davis, but with whiskers instead of dimples.

I’m taking her out with me everywhere. She gets along with everyone, having met eight cats, three dogs, two squirrels, and any number of people, with roughly equal aplomb. She’s turning into a service pet; already, my increasingly sluggish reflexes (which have given me some scares while driving) are slightly less bad. Wand-toys FTW!

Time to get on with wrestling the requirements for another day into a set of hurdles I can probably clear.

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A week on, slightly shocky but keeping calm

Those of you who’ve been, been with, or treated addicts won’t be surprised to know that J’s story changed 3 times in a week, but I didn’t fall for it. He has not tried to come back, did not go to the deadly place, and is taking care of himself rather better than might be expected.

The fact that he’s not imminently in danger is a huge relief, actually. I can handle breakups — I just can’t handle mortality.

I looked back at my previous post and got a huge laugh out of the fact that I opened with one sentence regarding a life-shattering event and went straight into the nerdiest possible fugue about meds, care, and therapies that are affected by it. I’m not sure of the distinction between nerd, dork, and geek, but I’m pretty sure I’m all three, and that’s okay with me. The doc I sent that letter to is the brainiest of those, whichever that may be.

The feelings washing through me are as varied as you might expect. There are some ways I feel freed up — I finally got to rearrange the living room furniture, and it’s a vast improvement. Nobody to get all tense and cranky about moving his sofa location. I look back no the ways I’d just stopped making room for myself because it was easier than arguing. The last year and a half was a downward trend, the last year pretty bumpy, the last few months really rough, and the last few weeks we were together were frankly awful.

That, I don’t miss.

What I miss is that where he was, was home. I’m homeless in one sense, because he’s homeless in the literal sense. (He sure enjoys the camping, though.) I rarely had to scold him for anything because he could hear me yelling at him in my head; he’d give me the same pissy look my cat used to give me when he was scolded, and make the adjustment I wished he’d make, with no more than 5 soft words exchanged. He literally read my freaking mind.

I don’t know what he’ll do when the weather changes. Not my circus now. He’s facing the consequences of his own decisions, and one is that he has fewer, and at this point less attractive, options.

I found a person who knows how to get me signed up for things like help with the dishes and laundry and vacuuming, rides to my medical appointments, and other logisstical needs. The shuddering absence of J has left me with arms so overused and attention so wrung out that I had trouble driving safely home today. I actually missed a turn on a road I’ve taken uncountable times. Not reassuring, that. Fortunately, it was easy to correct.

As I explained to my passenger: I can pay attention to the road and obstacles around me, and I can control the vehcile I’m driving, and do both confidently; the rest, like where to turn, is a bit iffy.

The physical consequences crash on, no matter how calm I can keep my mind most of the time. The tearing, strengthless feelings in my hand tendons is pretty scary. My ashtma is acting up, a consstant background pull. I guess I’d better raise my antihistamine dosage, and make an appointment with my rheumatologist to look into that.

The emotions ebb and flow: bouts of anger, so seductive but I refuse to cling to them … I let them roll through and roll away; irritation; lovely memories; wry humor; noticing things he’d like; gaping wounds of loss; grief; the endless wordless cry of a mature heart that’s broken, like a descant that never stops. I let them roll through. I’m an old hand at loss. The trick is not to hide from them, and not to cling to them. Look at them, one by one or five by five as they come, and see them for what they are. Then let them go. Not easy, but so worth it.

Task focused is good. I have things on my schedule and things I have to do. I pay attention to the next task. It really helps. It’s okay to stay out of emotional space, something I didn’t used to know. It’s absolutely okay not to go prodding that open wound. I can work around it.

I was cooking up a frozen Indian dinner on the stove, anything further being beyond me and microwave dinners being disgusting to me (except rice-pasta mac and cheese, for some reason.) I sat there, stirring it gently, and taking a step back to look at the whole picture.

Aspects of my life are better. There’s no arguing, for one thing. I’m seeing my friends more.

Aspects of my life are harder. I have more creative impulses but less ability to do anything with them. The logistics of getting through the week are awful.

On the whole, my life is definitely worse without J in it. His jobs can be done by others, but the whole blooming warmth and joy and peace that he brought with him, until he gave into the “stinkin’ thinkin'” of addictive-mind, is gone, except in memory.

Having said that — having looked squarely at that — I let it go.

I remember the time I decided to give up on repeating my mistakes. It was at my first nursing job, on the HIV unit. I realized, imperfect person in a tough high-stakes job that I was, that I was probably going to make mistakes. I made an agreement with myself not to repeat them, but to pay attention and learn, and when I screwed up, to figure out how to avoid doing that particular thing again.

I waited too long for him to do what he needed to do to get better. He’s not going to do that unless and until he decides, and — here’s the not repeating mistakes part — he has no place here unless and until he has well begun that arduous journey.

Whether he takes it or not is not up to me.

Not my circus any more.

Time to have that dinner and watch a silly movie.

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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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Getting held up by New York

I’m working on a novelette about the meningitis madness of last month. Until I get it done, let me entertain you with another tale of traveling with pain.

About five years ago, I fled an intolerable situation in California and, being pretty sure I was in my last few months of life, went back to the Northeast to visit with my nearest and dearest and stay until I mended or died, whichever it turned out to be. In short, I was not at my precarious best. I’d thinned my belongings down to what would fit in a suitcase small enough for me to handle, plus a spare set of “smallclothes” and meds in my laptop bag.

I flew into JFK airport and made my way (eventually) to a New York suburb down the street — and downmarket — from Scarsdale. I thought flying across country was hard work. Leave it to New York City (and environs) to adjust that perception. Anything worth doing is worth doing BIG!

It started with getting my luggage — the carousel changed 3 times. It had my supplements and laptop power cord in it, so there was no leaving it behind, as there was no knowing where it would wind up if I abandoned it and tried to get it tomorrow — it could land in Athens stuffed with either explosives or maple candy, or in the garbage scow on the Hudson stuffed with random bits of unsuccessful mobster; the contents would be more oddly distributed still. I’ve been flying into and out of JFK since the early 1970s, and I never leave my luggage uncollected there.

Each time a new carousel number was posted next to our flight number, herds of wilde travelbeests lumbered across the linoleum plains, flowing around eyots of irrelevant carousels and travelers from other flights, who huddled against treelike pillars and carousel islands in order not to be trampled underhoof.

I limped gamely after, unwilling to leave my luggage to the mercies of the feral crowd. We ultimately wound up back at the first one, which somehow didn’t surprise me.

I managed to get my bag unhooked from the carousel lip, but no further. It was just about to throw us both into the guy next to me, when he kindly popped it out and dropped it neatly next to me, with a brisk nod. Then went back to field the hefty steamer trunk of the twitchy Givenchy skeleton behind him.

I debated taking the bus to Penn Station ($3.50) vs train-shuttle (unstated) to the shuttle-bus($1.50); figured train-shuttle would be free, as my training in UI & signage, and casual acquaintance with the law regarding same, made it absolutely clear that prices must be stated up front. No price stated, ride is free. Sweet!

Of course, every other international airport I’d been to in the past 20 years provided free transport within the airport complex. This was New York, where you’re charged even for the gum on your shoe, so I was a little wary, but I was also exhausted and poor.

Got off at the end of the train-shuttle, pulled my wheeled suitcase to the exit door, and there found a sign stating it cost $5 to exit the train-shuttle station.

Stared at sign for 2 solid minutes, flies drifting in and out of my open mouth. SO. BLEEPING. WRONG.

Briefly considered going back, but too tired. I gave up my prospect of a little “real” food in the city to get out of the shuttle track area (why did I think $5 would buy anything in NYC?), and got to the shuttle bus.

The leaderboard read, “Penn Station.”

I asked the driver when the bus came that would take me to Grand Central. He said, “This bus goes to Penn Station.”

I asked again when the bus came for Grand Central Station, and the bus driver again said, “This bus goes to Penn Station.”

I said, “I understand that. I’m wondering when the bus is that goes to Grand Central.”

“This bus goes to Penn Station, lady.”

It finally dawned on me, as he was about to close the door in my face, to ask if there WAS a bus to Grand Central from the airport.

“Nope. This is the only shuttle into the city.”

“You’re kidding.”

“Nope. You have to get from Penn to Grand Central yourself.[I interjected, in shocked squawk, “STILL?” He nodded.] You can take a bus or the subway, but with your luggage, you’ll want to take a cab.”

I hitched up my jaw and hauled self and luggage in. He almost waited until I was seated to take off.

A teenager tripped over my suitcase on the wide, spacious, brightly-lit shuttle-bus. My suitcase came up to mid-thigh and was HOT PINK. Somehow, he walked right into it and went down with it — wrenching my wrist and elbow of course. After looking around blearily, initially wanting to blame someone other than his own clumsy butt, he very sweetly picked up all 38 pounds that encompassed every object I owned other than the clothes I had on, which was more than I could do, and put the handle back in my hand. I re-wrapped it with the scarf I used to cut the vibration and, with an added loop around my forearm, provide some stability against my weak grip. But, in case of other spaced-out passengers, the loop didn’t go back on until I was off the bus… at Penn Station.

Because it’s NYC, where a good conflict should never be resolved but should be handed down for posterity, they have NEVER IN THE PAST CENTURY figured out how to link up the northbound train station with the southbound train station, despite the fact that the trains are the lifeblood of the city and, on top of that, millions of customers travel from south of NYC (Baltimore, Washington DC, and points south) to north of NYC (from White Plains to Buffalo, all of New England, and Canada) every. freaking. year.

The JFK shuttle comes into the southbound train station, Penn. I needed to leave from the northbound train station, Grand Central. It was up to me, as it has been up to every single individual traveler in the past 100 years, to figure out how to get from provincial-sounding Penn to the arrogantly misnamed Grand Central. Let’s review my choices:

  • ¬†A cab was out of reach, especially as I’d just blown $5 on a ride that should have been free.
  • The subway meant more confusion, bumping, and stairs (the elevators and escalators are always out of order or being fought or pee’d on, sometimes both at once) than I could even think about without screaming.
  • The bus required finding secret, unmarked bus stops where they WILL ignore you if you’re off by a few feet and, I’m not kidding, either one or two transfers for one of the most essential routes in the city. There was no direct bus between the two major terminals of this train-dependent conurbation.

I can’t make this stuff up!

I decided to haul myself and my hot-pink suitcase the X blocks of crappy city sidewalks to Grand Central. “It’s not that far” — famous last words. “I’ve done it before” — 20-odd years ago, pre-injury.

I checked the map, got a sighting on the sun, went one block to read the street sign and check my direction, turned left, and marched off — for about 5 steps.

There were many adjustments to work out: soft tethering scarf, arm used (eventually, both), length of stride, and what to focus on — the directions, the pedestrians who mostly swerved nicely, the truly awful surfaces I had to traverse. The surfaces won in the end, out of sheer necessity. The occasional bozos, who thought I could steer better than their unladen selves, bounced off of either me or my sharp-edged case, spitting vile things without drawing breath. I kept on, pushing through the yawing wobbles the collisions caused as I pitched and heaved steadily onward.

Dear heavens, it was arduous.

Halfway there, dripping soot-laden sweat and hauling my grimy, now ashy-rose suitcase which had accumulated about 15 pounds of pollution by then, I found myself heading towards a cluster of burly cops standing between a parked cruiser half in the road with its butt half blocking the driveway, and the loading dock behind.

They gave me that dry, supercilious stare that city cops learn in the Academy. It says, “For our comfort and convenience, we’re deciding whether or not to kill you right now. Don’t try to make our day.”

I thought about that for a moment, trudging along with my case baulking at the bad paving, yanking my swollen wrists around like a fighting tarpon. I glanced at the path around the cruiser, involving 2 curbs, bad patching, and a pothole; quite apart from the random, fast, and dangerous traffic in the street. Definitely worse than the sidewalk.

I realized what I looked like: a grubby, chubby, oversocialized, White middle-aged female, evidently too poor for a cab. Very low on the food chain.

I realized I didn’t care.

I flashed back to the Jaguar my friends used to call me.

It was a youthfully arrogant and vigorous period of my life, when an off-duty cop in a bar in Manhattan wanted me to tie him up and beat him black and blue, because he’d really enjoy that. (I refused ever so courteously — which went curiously with the well-worn motorcycle jacket and wash-and-wear lack-of-hairstyle — and walked away, eyebrows twisting at the sheer novelty of the experience.)

I refused to walk around into the street. It was insane and vile to expect it, when I could clearly hardly put one foot in front of the other and was towing my life with battered arms.

No. Not playing that game.

One tactic of successful women:
If the game is rigged against you, change the rules.

This clot of cops got the twin-engined, diamond-drill stare from under my beetling brows, the burning power of pure womanly disgust and exasperation doing the work of 5 bodyguards and a million dollars.

Great shot by Bernard Dupont of France, via Wikimedia.

New York’s Finest peeled back from my path like an amateur drill team, stumbling slightly and eyes wide.

Yeah. That was more like it.

Same photographer, same cat, relaxing after she made her point.

I heard their startled and admiring voices behind me. I almost smiled. I wondered what they’d say if I turned around and demanded a lift. It was almost worth the effort, but turning back was unbearable, even for that entertainment — so I kept on.

NYC cops weren’t so racist then; it might have worked even if I weren’t White. The good old days.

Stumbled into Grand Central, at last.

Just what it’s like. Image by diego_cue

After dropping my sweat-sodden self onto a bench until my breathing evened out, I got up on pure willpower (my legs certainly didn’t have much to do with it) and wobbled up to the ticket window (One of those funny alcoves on the right.)

Despite the unmitigated chaos and relentless interference of my cross-City odyssey until now, I had the pleasure of getting good instructions, delivered clearly; the right ticket to my destination; explicit directions to exactly the right track and the right train; and which cars to avoid — “The drunks use that one, and it’s never clean.”

I fell into the seat nearest the door, then slid to another when someone dumped a heavy bag which fell over onto me, edge first of course. I let the bag lie and he eventually picked it up.

A lovely young woman, the quintessence of perfectly-formed and perfectly-presented modern American beauty, got on in one of the suburbs, sat down across from me, and gave my weary, grubby, chubby, middle-aged self the sweetest and most open smile. I did my best to repay such sweetness from out of the blue with the best smile I could dredge up in return, and a nice word.

I got off at the Scarsdale stop and there was a slight pause in my progress as I resisted the boisterous flow of commuters scenting their stables. Clutching the rail that had kept me from being swept under, I saw a car door open. In a few steps, I fell off of the train station and into the arms of my old friend.

I asked her later why such a beautiful, clean, discreetly made-up, perfectly turned out young woman would greet such a gargoyle’s appearance with such sweetness. My friend replied, “I’m not sure how to tell you this, but it’s envy. You can afford to let yourself go [finger-quotes.] She can’t. She wishes she could be like you.”

It finally penetrated what a trap the relentless and expensive looks-slavery of upscale New York is for women. My lifelong sarcastic envy of “Barbie dolls”, not to mention “Givenchy skeletons”, died on the spot and I was glad I’d added the nice word. Anyone who could envy me at that point was in really bad shape.

The cross-country flight was originally going to be the funny story I told to amuse my hostess — delay, changed gate, dashing around in a wheelchair, turbulence, sick babies, nervous lady with long arms and huge rings taking up the aisle and risking the eyesight of those nearby — but it really paled next to the story of the last few miles. She laughed and applauded and then, once I was fed and pilled and washed, tucked me into a soft bed with endless pillows. I slept better than I had in months, safe and still and comfortable at last.

I haven’t tried to cross New York City since, except when I can afford a cab all the way from the airport to Grand Central. Life is too short for that much work and physical battery… and the NYC cops have changed.

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Fevers, friends, forgetting, and a kind of freedom

With the kind consent of the friend mentioned, I post the following exercise in¬†“radical presence”, or staying sane in spite of the craziness…

Bubbles of thoughts are rising through the viscidity of my mind, drifting from side to side, now tending one way, now tending another.

Feels¬†like a relapse of that FUO (Fever of Unkown Origin, although there’re more vulgar interpretations of that acronym too) that looked and acted like viral meningitis. This time, I have a thermometer so there’s something I can document. It’s less than a few weeks after the first case, so this is not good.

So far, though, no vomiting!

me-fingers-peace
Awesome! I prefer not vomiting!

While recovering (barely) from the first bout of this, I met with one of my excellent friends, the one who’s going to make decisions for me if I can’t make them myself. We first met during one of the most effective times in my life.

She spent much of the recent visit picking up after me, getting the tea I forgot, making sure everyone got fed — the ideal hostess, really. Too bad that was my job. I was a good small-party hostess at one time.

For obvious reasons, given her impending status as my health care proxy, I need her to be able to tell me how I’m really doing. There was a time when full anesthesia and industrial forceps were required to make anything that wasn’t kindly and flattering come out of her.¬†She’d almost rather lose a limb than lose her manners.

Cartoon of a surgeon with mask and goggles on, head haloed by enormous OR light, leaning toward viewer with scalpel in one hand and chest spreader in the other

So, testing the waters, I asked if she found me a bit daffier and more disorganized than I used to be.

I’m so proud of her. She gave me a somewhat verbose “kind of” … then gave me an eyeball-to-eyeball gaze of love and torture, which I’m pretty sure meant, “It shreds my being to see you like this, but somehow I have to breathe and keep going, and I promise you I will, no matter how hard.”

Such a friend can’t be described, only experienced if you’re insanely lucky.

I rarely look back. There’s no future in it. However, the memories I usually keep firmly in the rear-view mirror haunted me for days, as bright as if they were klieg-lit.

Teaching her to run effectively under the redwoods. She was a quick study, all right. I was getting sick, so the fact that she could lap me in less than a year is probably not something I should feel too bad about.

Trying very hard to talk her out of medical school, which I was pretty sure would embitter her extraordinary sweetness and distort her self-effacing diligence. In the end, it gave her mind and heart a stronger shape.

Researching and working together on user interface guidelines, which made most senior engineers effectively beg our blessing on their designs — as they should!

What it was like to ask my quiet, courteous friend a music question, and have her snap upright, point snappily to a chair, and snap, “Sit.” Then give lively, passionate, 20- to 40-minute illustrated lectures on music theory that enrich my life even now. (I did much the same thing for her health questions.)

On a related but more self-oriented tangent, remembering what it was like to keep over 230 threads of information going simultaneously in my head, switching threads from meeting to meeting and file to file.¬†I tracked the early course of this disease by when the number of thought-threads went down. I was “laid off” when I could only maintain about 90 different threads in active memory. I was crushed by that figure.

Remembering what it was like to run through the redwood glen at dawn, the scenery and birds staging a daily spectacular just for me.

coastal redwood circle seen from base, heavy shadow at bottom, well lit at top

The last walk I took on the mountain tops, when every bit of exercise just made things worse, but I had to say goodbye to the wild open spaces.

view of road on mountain spine of high chaparral and live oaks, motorcycle ahead, other ridges dark purple in the distance
This takes me back to my favorite motorcycle riding route. Bikes were the first great joy this disease took from me. Image by BoltSnypr from Wikimedia Commons.

The curling breezes change direction again.

The wasps are too quiet. I turn my head to follow them and warn them away, and the world seems to slip off its stand then right itself again, and the quiet singing in my ears rises to a sharp chord then slithers down again.

Having a frying brain is like living in a hallucination at times.

Famous photograph called
It felt like this looks.

This post is a little diaristic, but it serves a purpose beyond easing the pressure in my head. You’ll see.

The hundreds of little mercies that keep me going cluster around. The air here is delicious. The trees are fluffing their leaves in the curling breezes. J is quietly rattling around inside, scared in his ignorance of my illness and memories of losses, but keeping a good face on and making sure that I hydrate. The birds are mulling the possibility of rain, but it will hold off a few hours. The sun strokes my head with a long hand.

water_swimminghole-1

I breathe, and the world settles down.

A few days ago, I had a wonderful insight about the way that many bits of my past are getting referenced in the present somehow, and how, rather than highlighting my staggering losses, they fit together in a way that draws me onward.

That’s all I can remember, though. I think most of the ideas poured out of me last night as I sweated with the fever I forgot to document.

Mouse brain neurons, two pairs, stained flame yellow against red background
Even my brain is seeing double after all this fever time. Image by neurollero on flickr from Wikimedia.

Drifting first one way, then another.

Must remember to inhale when getting up. It’s the only way to keep my head from wanting to explode, and clutching it doesn’t really help.

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

Normally, a good idea like the past-reaching-forward-and-propelling-the-present would come back to me with sufficient prompts. Not the way things work anymore. Once it’s gone, that’s it, it’s gone. I’ve learned that the hard way, over years and years.

However, do I need to remember the examples and details? Or do I just need to remember that feeling of a rising tide lifting my weary, worried ass?

Maina at sunset, with masts sticking up and reflecting down, both water and sky streaked with yellow, orange, gold, and purple clouds

Just because I don’t understand how it all fits together, does it stop being real?

Medicine is real, neurology is real, and I defy absolutely anyone to say, hand over heart, that they really, REALLY understand those. Yet, they are real just the same.

I’ll allow myself to be carried onward by the memory of the idea, even if I can’t remember why it made sense.

For now, it’s time for more lie-down and seltzer.

Small moves. Just like steering a sailboat. Small moves get you where you need to go, without steering wrong. Now, seltzer. Later, rest. Then, we shall see.

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Freaky Fibro and the elegance of precision

As the title hints, it’s been another fascinating visit with my pain diagnostician.

His current working diagnosis is fibromyalgia, which he characterizes as being capable of throwing some hairy curve balls (my terminology, not his) including the growing litany of food sensitivities, which solves a major problem in my mind.

Thyroid disease can also trigger the symptom complex that otherwise gets tagged “fibromyalgia” (more on symptom complexes in a minute.) I mentioned that I’ve had my thyroid checked several times and last year came up with Hashimoto’s (meaning my immune system is attacking on my thyroid.) Since I developed the first symptoms of this central sensitization around 16 years ago, it seems not like a precipitating event; since “normal” thyroid activity is not the most meaningful term, I’m not sure it’s irrelevant. I guess I’ll learn more as we go on.

He’s also checking my hemoglobin A1c to check for underlying blood sugar instability. I’m always happy to check that. Also B12 (pernicious anemia etc.) and D3.

Now we come to the fascinating (and crucial) distinction between a symptom complex and a disease. Both are used as diagnoses, but they mean different things. (Yes, I’ve used the word “disease” indescriminately here, for simplicity.) Medically speaking, a disease has a cause that can be targeted, what you might call a diagnostic end-point. A symptom complex doesn’t have that level of targeted responsibility for the illness; it’s a consistent set of symptoms that cluster together often enough to get a diagnostic label, which takes some doing.

Here are the two scenarios.

On the one hand, you’ve got someone with a lot of pain, funky guts, sensory reactivity, and normal labs. The doctor (we hope) rules out any other possible cause, and decides the diagnosis is, say, Fibromyalgia. This is a symptom complex, because it’s described in terms of what it does to the person, not in terms of specific pathogens or organs as the causative thingy. (I’m tired; thingy will do.)

On the other, you’ve got someone with a lot of pain, funky guts, sensory reactivity, and thyroid labs that are out of whack. Further examination of the thyroid discovers specific thyroid abnormalities which can be treated. With treatment, the symptoms subside or even disappear. The diagnosis is the disease of hypothyroidism, with a diagnostic end-point in an organ (as in this case) or pathogen.

CRPS/RSD, Fibromyalgia, and some other hideous conditions are symptom complexes. This is used by some as a reason not to “believe in” those conditions, because they aren’t “real.” This is intellectually dishonest, but it does no good to tell them that; assuming that a lack of diagnostic end-point equals lack of ill-health is blatantly absurd, but this is a reality we must contend with. It’s a drawback of having such a flexible language as English, where the same word can mean different things from one context to the next: in Plain English, disease and illness are interchangeable, but in Medical Jargon, they’re definitely different: disease means specific diagnostic end-point,¬†illness¬†tends to suggest a pathogen, and condition¬†is the catch-all term — but is used more for things that really aren’t diseases or illnesses. Another example on a hot issue: in medicine, narcotic refers specifically to opioid analgesics; in law enforcement, it’s a MUCH wider term, encompassing any substance that legislators have decided is not legal. In courts, the meaning of the term has to change depending on who’s involved, which has to be weird.

No wonder there’s confusion around anything medical. What a setup, eh?

This brings us to the physician ethical structure this doc works with, and where it fits into this patient’s worldview. You can almost hear me purring comfortably from here.

He speaks of himself as a Palliative Care specialist. Most people think of Hospice when they hear palliative care, but it’s wider and simpler than that. It means this physician has chosen a field defined by the fact that his patients will probably never recover. That’s what palliative care means: keeping the patient as comfortable and functional as possible, for the rest of their (probably, but not necessarily, truncated) lives.

Yeah, pretty darn special. How many of you who see pain docs hear them use the term “palliative care” naturally and fluidly, without wincing and scuttling on? It’s a little thing that means a lot. It makes me realize I’m seeing a doctor¬†who CAN be there for the long haul, if need be. Someone who would NOT throw me off with the very natural cringe of frustration and failure most docs feel when they can’t save you, or when you’re in the final downhill slide and they can’t face you dying. He can take that strain without failing me. That’s rare indeed.

Palliative care is the very heart of chronic pain care, and I couldn’t face that myself until today.

So now I just have to die before he retires…

Kidding, Mom!

I’d like to go over his approach more, but the fog is descending; it was an early morning and I’m paying for it as usual. I’ve got lots of notes, though. It’s great food for thought, so, with luck, I’ll come back to it.

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Aw, nuts!

While I was mulling the constancy of nausea and yuckiness, looking for a reason more useful than “it’s winter”, I realized I had relentless cascades of post-nasal drip.

The stomach isn’t too fond of relentless cascades of post-nasal drip, because the glucoprotein complex generically called “mucus”, which we usually call “snot”, is not that easy to digest. It’s not really meant to be digested; it’s meant to do its job (picking up and trapping obnoxious particles or germs or what-have-you) and then get blown out. It’s not supposed to roll into the tummy in a never-ending stream.

me-tongue-out

I was reading up on GI issues (as one does) and stumbled across a piece¬†which said something like, “Stay away from nuts and seeds entirely. The oil is rancid by the time it gets to you and that rancidity is poison to the systems of people who have leaky guts and sensitized systems. You can usually tell because the immune reaction affects your sinuses and causes lots of extra mucus.” If you’re curious, this article was about the GAPS diet and explained the whats and whys.

I threw my hands up in exasperation and disgust. I relied on nut and seed butters to start my day, because they cut the morning pain down to a quite bearable level and gave me a bit of protein that didn’t bring my stomach up in revolt. My mornings are tough enough and this info just pissed me off.

The next morning, I woke up noticing that I didn’t have post-nasal drip. Nice. Then I started on my morning breakfast of apple (malic acid helps the pain ease off too) and sunflower or almond butter (I forget which.)

Two bites…. then a relentless cascade of post-nasal drip.

My first thoughts were mostly expletives. Totally unprintable in a family-friendly blog.

I went off the rails a bit. I’ve been dealing with this disease complex for nigh on 15 years now and I have evolved a pretty limited (and not cheap) diet to manage it. Rather than thinking, “Oh great, a good clue as to what I can do to improve things!” I mentally roared, “WHAT THE BLEEDING HECK CAN I EAT ANYWAY????”

Tiger yawning hugely. Looks like roaring.

Let’s review.

– Genetically-determined mild allergy to white beans. That means soy, chick peas (which wipes out hummus and much Indian food), most multi-bean soups and salads.

– Roaring neurologic gluten response, which in my case spills over into related molecules. This means: no wheat, barley, triticale, rye, oats — in fact, most grains; nor fresh milk, soft cheese, dairy ice cream; and eggs only in strict moderation.

– Hashimoto’s disease means my body is chewing up my thyroid. This means definitely no soy, but also, no broccoli, chard, kale, bok choy, cauliflower — no cabbage/brassicas of any kind — and that’s an awful lot of vegetables not to have as an option, including most winter veg. And yet, I need lots of vegetables and happen to like all of those. Even in small amounts, brassicas can squash thyroid response. It’s very sad.

– Candida/c.diff overgrowth, which means no sugars (not even unrefined honey or maple syrup, not even low-glycemic stuff like agave [which makes me cramp] or maltose), no rice, minimal fruit, no juice, no root starch (too high in sugars) or white starch of any kind (if I’m doing this diligently) which wipes out the potato family and remaining grains except amaranth (I can’t digest quinoa at all, so it’s not even an option.) Then there are the limitations that are less obvious, which means, no tea or coffee, no vinegar or cultured food (if I followed that parameter, I’d be unable to digest anything and my guts would be even worse), no artificial anything because they tend to be grown on yeast or malt slurries (which is fine because packaged foods tend to happen to other people, not me.)

– The constant immune-y fuss means I should probably be more diligent about the inflammatory culprits: tomatos, eggplant, potatos, peppers, the whole belladonna group. I LOVE those things. Also, no canned foods, because the trace amounts of preservative stuff are so neurotoxic that molecules matter to my body, and homemade canned stuff can still grow trace amounts of the fungusy-yeasty stuff that boots me back into candida territory.

– Now, no nuts or seeds. At all. Possibly no cooking oil. I was diligent about getting the freshest and checking best-by dates and inspecting the packaging, for the candida reason. Not enough any more. No nuts or seeds at all.

OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW

I think i’m down to squashes, lettuce, and incredibly expensive pastured/wild flesh foods. Oh, and grassfed (Kerrygold) butter. I can put that on the squash, I guess.

To be frank, I haven’t been very diligent about eliminating the root veg and I’ve had some broccoli and cauli lately, because it’s freaking winter and I’ve needed to eat something that’s available.

Since reading about the nuts/seeds thing, I totally fell off the rails. No gluten, because I’d rather die than go through all that again, but I’ve gone to town on sweets, rice, vinegar, ice cream, root veg, brassicas, belladonnas — everything but nuts and seeds.

Wide-eyed kitten staring at a roast chicken on table in front of its face

Paying the price for it, too… as one does.

Two nights ago, I made myself a new bedtime meditation recording, designed to rebuild my own mental core. I’ve just about had it with trying to cope with the world (if you have one eye on US politics, you’ll understand that well enough, especially if you have friends and family who are losing care due to political brangling, losing property due to corporate gamesmanship, or¬†losing their liberty¬†due to being not-White); add to that some family crises of illness and a bereavement in the extended family, and… yeah.) I’ve reached March feeling absolutely shredded inside.

And then…. NUTS!

Old amber-screen lettering showing *TILT* like on old pinball machines

Lately and increasingly, my brain was really resisting the relaxation response training — which is very odd for me — and I was having nightmares and waking up 5 times a night. I thought that, if I backed off the calming exercises and instead re-integrated my core self, that would make more sense than trying to pretend everything’s all right for half an hour. I have no idea what that looks like for other people, but I have a pretty good idea what it looks like for me. So, I made a recording with a series of mental/imaginative exercises that boil down to my¬†individualized psychological structural support.

The chaos and rage are abating, which is just as well, because I have a follow-up appointment with my pain specialist tomorrow. I’m calming myself down with this article before turning my fragile attention to encapsulating the physical fallout and revelations of this winter in a coherent patient update.

I get to tell him that I’m seeing the GI specialist later this week, and that I have tested marginally positive in a screening test for mold toxicity, so more blood tests are coming from my allergist. That would actually explain a lot, but I’m not sure where he stands on the subject. Mold toxicity, as a driver of illness, is one of those things where the physician’s belief-state has more bearing on care than the coherent, consistent, verifiable facts of the patient’s disease-state — in that respect, it’s like chronic fatigue, neurogenic pain, and most immune disorders. Familiar territory to many of us.

A few days ago, I apologized to J for being such a piece of work lately. I told him I’ve been ill and in more pain than usual. He said, with the kindest intentions, “Well, it’s hard to act right when you’re sick. You have to feel good.”

I said, “I never get to feel good. It’s just different levels of –” (waved my arm expressively.) “I usually do a pretty good job of managing myself anyway.” He agreed, bless him.

That first phrase, “I never get to feel good,” has been preying on my mind. But then, it’s winter. This will pass, and I’ll find it easier to put my focus where it belongs — on what I CAN do, CAN eat, CAN feel, that’s not so — (wave my arm expressively.)

Until then, I’ll keep breathing, keep making my appointments, keep tending my relationships as well as possible, keep up on my documentation, keep on keeping on. As one does.

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On trauma in central nervous system sensitization* & dysautonomia

I’ve been mulling this for years¬†and occasionally blog¬†it on a case-by-case basis:

Handling bereavement (with digressions): http://livinganyway.com/wp/2014/03/08/threads-on-the-loom-bereavement-and-crps/

An anxiety toolkit I came up with for myself: http://livinganyway.com/wp/2016/01/27/handling-anxiety-and-its-obnoxious-little-friends/

On a surprisingly useful tool which really does help (despite my complaining): http://livinganyway.com/wp/2013/07/16/relentless/

Fortunately for all of us, the blogger at Elle and the Autognome has done a good job of laying out the basics and providing a starting-point for figuring out how to manage it in individual cases — because we’re all different, and we have to figure out what works in our particular bodies. So, rather than waiting for me to get it together on this topic, I’m going to punt to her.

Click here to read her friendly, burbling, yet deeply intelligent post: https://elleandtheautognome.wordpress.com/2017/02/25/trauma-in-a-faulty-nervous-system/

*¬†For the record, “central nervous system sensitization” is a collective¬†term for the diseases characterized by CNS¬†up-regulation of essential neural signals, notably¬†pain but also¬†a whole¬†garbage-can of signaling misbehavior that goes with that. These diseases include CRPS, fibromyalgia, chronic fatigue, multiple sclerosis, lupus. chronic Lyme, and so on.

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