Music lit me up and doused the fire

Okay, this is weird… good weird, though.

I’d been in a really bitter, increasing pain jag for days, and though a dose of Norco and dramamine gave me one good night Wednesday night, the pain started ramping up again once the meds wore off on Thursday morning.

That was bad. Very bad.

The Norco usually breaks the cycle. I definitely did not want my body thinking it was normal and appropriate to keep cranking up the pain.

I worked in the yard Thursday late morning (John keeping me from overdoing on any one thing, because I couldn’t track well enough to notice), because I just had to move through the pain to keep it from making me lock up.

Then I took a disco nap, dressed up minimally, and went to see Boz Scaggs at the Calvin Theatre in Northampton, which we’ve been looking forward to for a month.

Side note… I haven’t been inside the Calvin for 30 years, and it looks it around the gingerbreading, but apart from the art-nouveau panels it was in great shape.

The opening artist was a solo acoustic set by Jeff LeBlanc, who has had some success but not that much; an unfair position to be in, because he has the creamiest tenor I’ve ever heard in the rock/folk-rock realm, a pleasing and rather classy onstage personality, and a delightful way of framing and playing his material. He has matured just since recording this:

I mean, John Mayer can just shut up and move over. Beautiful.

The Boz show was outstanding.

He used to go in for pyrotechnics and flash, I’m told, but this show was just pure, perfect musicianship. His 7-member band fattened up the sound in the smoothest, tightest way — every note perfect, every beat perfect, and the band grinning and digging into the show like they were as happy as we were.

Bonus: I finally understand what musical stage lighting is supposed to do. I’ve seen a few shows and, apart from the spotlight, the shifting colors and intensities just seemed to be either distracting or hokey. The lighting actually worked this time, and I only noticed because there was one single slightly missed cue, and then I noticed how flawlessly it had been guiding my attention and floating with the music until then. I could see everyone, but each musician was distinct, and the soloists glowed. Every moment was beautiful. Who knew?

I was absolutely jamming. Every song was just a whisker better than the last (perfect) song, and everyone was having a fabulous time. I was lost in it, elated. I was rocking in that ecstatic state that a great performance can put you in… and suddenly, I swear I felt my brain move: my left front inferior pareital portion and my right lower temporal lobe and some bits elsewhere gave a squirm, a shift, and then clunked into a more comfortable position.

Then I realized I was in no pain. No pain! I mean, NO FREAKING PAIN AT ALL!

I’ve got to look those parts up and see what they relate to. I may be overthinking it, of course.

Fast forward past a couple post-show hours of “wow” and a happy thunk into the pillows; waking up to a beautiful dawn and feeling, in the words of Tony the Tiger, grrrRRRRREAT.

Still have allodynia, where a breeze feels a bit like a hot iron sliding over my skin. Still feeling a bit fragile, like my body might tear at the seams if I try too hard. Still not pushing it (which means I gotta get off this keyboard.) But my baseline pain is back down, well below the event horizon of functionality, and I can sit and stand and move and there is NO FIRE. NOR FIRE AT ALL.

Those coals banked in my feet and hands and knees and every single bone of my spine and so on and so forth are just gone.

This is a good day, folks.

Next on the agenda, after finding our own home and getting the outstanding business nailed down: Music lessons. I don’t know in what, but all those scientific studies about the different ways the brain benefits from hearing and playing good music are suddenly making a boatload of very personal sense. Victory! Thank you, Boz & co. 🙂

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Battle for the Brain

It’s been a crazy winter, even for New England. Those of you with pain syndromes know what that means: changeful weather means unstable pain neurology which means more pain and less brain.

I’m so much more stable here in other ways that I found it frustrating to be soooooo daffy. I wanted to tuck that daffiness back behind the dam I can usually hide it behind, and use the creative and practical components of my mind to drive what I show in public.

I revised my supplements a few times, and finally found a routine that does seem to stabilize things a bit better, although it’s kind of hard to tell (it’s like inspecting a crystal with the lens inside, or possibly the other way around.) I’ve stopped fiddling, and will let the test of time tell me how this regime really does.

Also, we’ve had 2 or 3 strains of flu (so far) dancing through the household. The second one was nice, because the really awful part lasted about 5 days and it had an incubation period of about 6-7, and we got it one by one; as soon as 1 person got really sick there were 2 people to take care of him or her. In one case, this meant miso and ginger soup; in another, raw garlic in mashed potatoes; in a third, goldenseal and vitamin C; in all cases, loads of homemade chicken soup and buckets of fluids.

I’m not sick of homemade chicken soup, as every pot is different, but I am *so over* herbal tea, broth, diluted juice… everything. I had a big mug of plain hot water yesterday because at least I’m not sick of it.

I find that viruses affect my brain. They have for as long as I can remember. One of the first signs of viral illness, for me, is getting cranky and forgetful all of a sudden. With all these brain issues I have now, it just turns the volume of pain, reactivity, and goofiness up to 11.

Into this brew of brainlessness, add one more element of confusion: my most expensive brain prescription, Savella, looks exactly like my cheap antihistamine, generic Zyrtec; I take them both twice daily.

You can see this coming, can’t you…

I found out a week ago that I’ve been double-dosing on Savella and underdosing on Zyrtec. (No wonder my asthma has been acting up.) That, more than the virus and sinus activity, would explain the intense dizzy spells, disembodied feelings, uncharacteristic irritability, and eerie emotional detachment from my nearest and dearest. (No medication is harmless. Now you know what an overdose of SNRI does to me.) It was a relief to know what really caused all that, but it still sucked to go through it.

So, thanks to the daffy-dam getting burst by those bugs, I blew my brain out of the water (and also blew about $150!) AND set myself and my housemates up for a few weeks of needless unpleasantness. I’m still recovering, but well enough to think coherently about it, so that’s a huge improvement.

To my morning pre-pill routine of apple (malic acid) and sunflower butter (digestible folate, minerals and anti-inflammatory oil), I now have ~1/2 cup of defrosted Boreal blueberries (intense brain food with anthocyanins and antioxidants for recovery) topped with grated aged cheddar (intense brain food with dopamine precursors and saturated fats for those nerves) during and after pills. My pills go down better, and bit by bit the fog seems to be clearing.

Now that I might be able to think my way past a soggy Kleenex, it’s time to get that “activity” thing going again… if I can remember how. There is absolutely no substitute for activity, because it balances the autonomic system, improves neurochemical stores and their behavior, and can even reduce pain, with *no negative side effects* — as long as you don’t get hurt or over-do.

I had a dream last night of dealing with broken gym equipment, and of absolutely longing for good t’ai chi instruction. Until I find it, I’ll work with what I’ve got: my class notes and a couple DVDs from my old Academy. It’ll get me started, and then we shall see.

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A word on oils and fats, collectively called lipids

A healthy person needs a lot less than a painie; women need a slightly higher proportion than men. Recommendations are based on healthy men. Think that over for a minute, painie women…

More and more science is discovering the link between longstanding pain disease and demyelination, that is, the protective layer of fat around certain nerves. Without that protective layer, the nerves can’t work right and rapidly get very sick and sore.

A healthy person can maintain myelination on a normal diet. That’s great for them. It’s why we call them normal.

We have a lot more demand on our myelination. We are playing a different numbers game than normal people. Normal diet is not necessarily right for us. A low-fat diet does not necessarily support myelin enough for those whose nerves are as heavily besieged as ours are.

We benefit, more than most, from staying away from poisonous fats, like hydrogenated fats and conventionally-farmed flesh foods and farmed fish. They can really push the poisons into our sensitive systems.

We need, much more than most, to get cleansing and healing oils and fats of all kinds:
– from omega-3s in fresh vegetable oils (avocados, olives, sunflowers, nuts, seeds) and wild fish (salmon, sardines, cod, menhaden fish),
– to the medium-chain fatty acids in cocoa butter and coconut, both of which are wonderful to cook with (vegetables sauteed in refined coconut oil are outstanding),
– to the naturally saturated, artery-*cleaning* fats in 100% pastured dairy (cheap source: Kerrygold butter!) and other flesh foods raised according to their genotype (scratching poultry, rooting pigs, pastured herd animals, etc.)

*Fats and oils are necessary, in the presence of ongoing nerve damage.* They provide mechanical, physiological, and anti-inflammatory support to the beleaguered nerves. Lack of adequate lipid intake can worsen the nervous system’s situation, which has knock-on effects on the metabolism, cardiac system, digestion, endocrine signalling, and so forth. The nervous system drives every system in the body; without adequate support, it can’t do a good job. Very simple.

When I first got knocked down by CRPS, I couldn’t lose the sluggish-digestion-related extra weight or improve my functional level, until I raised my intake of healthy lipids to about 2.5-3 times what the recommendations said. Once I was getting enough of these neuro-protective and anti-inflammatory ingredients, my metabolism went up, my pain and clothing-size went down, and everything got significantly better.

The temptation then is to overdo, which still helps reduce pain at the time. Half a tablespoon of grassfed butter is better than a pain pill for me. Unfortunately, it was a high-pain winter, and I used it several times a day. That created a much bigger body than I can manage, and that puts more strain on my joints and bones. I’m working on that right now. I definitely overdid the pain-reducing foods through all the activity around moving and travelling my first 6 months here. I’m about 20 pounds down, but it won’t really show for another 20.

We like to eat serendipitously — it’s natural, and harks back to when we ate whatever was around: apples, berries, tubers, mastodons, and so on. Unfortunately for me (as it is for many spoonies), I have to be very thoughtful about what I eat. As my brain gets clearer, it becomes easier.

It’s too bad, because I’d love to be thoughtless and festive about food once in awhile, but I’ll have to be content with being thoughtful and festive instead. It works better.

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What does it take to seize a difficult life in both hands?

This disease, like time and life, dips and dances but tends to go in one direction. As long as it doesn’t outrun my ability to adapt and amuse, I can put up with that. After all, we’re all born with a one-way ticket, and sooner or later we have to get off the ride. Not all of us get a chance to prepare for our exit, or even get much warning as to what it will be like.

In my first nursing job, on an HIV unit in the very early 90’s, I had a Mexican soap opera star as a patient. He was lovely, in every way.

Head shots of Penelope Cruz and William Levy
If you can, picture a cross between these two. That was this guy. And really sweet, too.

This was his first hospitalization with the disease and he hadn’t found his particular polestar, the thought/idea/perspective that would keep him determined and alive for however long he had. He was a lot of work emotionally, needing much encouragement to keep trying new treatments (and they were very new back then) and to keep eating even when he didn’t feel like it and so forth. He had been in for a long time — over a week.

One day, while I was setting out some medications for a complex patient who needed his meds punctually, and didn’t have time or attention to spare, the soap star came mooching up to my med cart in his hospital gowns (one in front, one in back) and huge, lustrous eyes.

With what attention I had to spare, I thought, “go away, come back later” as hard as I could. Didn’t work that time.

He said, as he’d said before, in the same miserable tone as always, “I’m going to die.”

Sysiphus looking miserable as he pushes a rock up hill... with poor body mechanics.
“It’s a big weight.”

Up until this occasion, I’d stop what I was doing and gave him a full minute of attention and cheer him up a bit.

I didn’t have a minute right then. I had maybe two seconds. “Everyone’s going to die,” I said, barely pausing in my dosing and calculations.

girl on a flat beach kicking a ball high
“Maybe it’s only this big.”

Long silence next to me. I kept doing my job. (Keep in mind that nurses are paid to dish meds, not counsel and encourage struggling patients. That’s all that the staffing patterns allow.)

Then, in that delicious accent, a voice like the rising sun announced, “You’re right! Everyone’s going to die!”
Stone angel with hands clasped in prayer, standing on a pillar, sun like a glorious halo
I heard him drift back to his room, muttering in wonderment, “Everyone’s going to die… it’s not just me,” and I smiled to myself. I wasn’t usually rude to patients, but it sounded like it was exactly what he needed.

My other patient got his meds on time. So did the rest. At dinner that evening, my soap star sat up and devoured every bite, beaming and bouyant as we had never seen him. I began to see what all of Mexico had fallen in love with. He was discharged next day, full of fight and life again.

Somehow, that brutal realization — that everyone dies, that being doomed to death isn’t special — was what he needed to break the spell of misery that his diagnosis had put him under. He had staggered in a broken boy, and he walked out a free man.
Man_walking_EMuybridge
I don’t understand it either, but it sure worked for him.

Perhaps I do understand, at least a little. My experience with that revelation goes a bit further back, though.

I had a book of rhymes when I was little. Most were delightful,  but there was an old one about a sick little girl that contained the lines,

“Doctor, doctor, must I die?”
“Yes you must, and so must I.”

old engraving of a doll-like child lying down, a grim-looking woman in robes looking down unfeelingly on it, a child skeleton hanging from a pole. So hokey and grim it's funny.
Makes you feel all warm and fuzzy, eh?

I went through a jagged 6 months when I got to grips with the meaning of that (plus, I thought it was a rotten thing to say to a sick little girl.) My mother got tired of assuring me I had never been nearly sick enough to worry about it and, on further questioning, assuring me that she and Dad wouldn’t pop off for a long time yet, and I’d be an adult and able to handle it.

Later, I vaguely remember looking around at a sunlit day, seeing my brothers and friends playing in the sun, the leaves of my favorite tree fluttering in the breeze, and knowing everyone would die one day…
Old Chinese painting of 4 children, in voluminous clothes, kicking a ball around.

…but not yet.

Now, we were all alive and together.

Better grab it! Yes!

A smile pushed up through my whole body, and I went out to play.
glee
I think that’s when I first began to understand the difference between being a spectator of life and being a part of it. That realization was rooted in knowing that it’ll end one day, and I didn’t want to miss out on whatever it had to offer in the meantime.

Perhaps that’s what my remark to my patient did for him; but, being older, he could process it in 6 seconds, rather than 6 months. Everyone dies; but right now, I’m alive!

Cats are masters of pa:ng :)
for lifelong celebrations!

I could be wrong, but I think my insistence on being a part of life is a big piece of my adaptability, not only to this wretched bouquet of stinker diseases, but to everything.

What do you think? I’m curious if there’s a link between knowing death and survival, between a lust for life and adaptability. I’m not talking about Norman Cousins’s ideas of exceptionalism, but of an ordinary, grubby-handed greed to be in this thing called life, warts and all. What does it take to reach that?

This might be the question that shapes our future ideas about adaptation and resiliency.

I’d be fascinated to hear from others on this.

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