Recipe: Even Brain Food Shakes evolve

As my digestion has gotten more frail, I’ve had more and more trouble with my Brain Food shake.
 
I went to a powder, because organic kale was hard to find and unwieldy,  and the nonorganic kind smells like a chemist’s armpit. And was still unwieldy.
 
But those shakes still hit my stomach like a cannonball.
 
J listened to me complain for the second day in a row and said, “Don’t eat fruits and vegetables together. Of course it’s impossible to digest.”
 
I stared at him a moment. “I used to know that,” I said with chagrin.
 
That was over a month ago and I think I’ve finally figured out how to make the greens taste like something other than pond.
 
So here are the current incarnations of my Brain Food Shakes, the simplest way to get maximum nutrition with minimal effort:
 
Morning Shake:
 
– 1/4 pound Trader Joe’s frozen Wild Boreal Blueberries (high anthocyanins, low toxins)
– heaping soupspoon almond butter (good oil, protein, minerals) (TJ’s is cheapest)
– Cal-mag supplement (for nerve transmission, teeth and bones; 1 tablespn Lifetime brand, blueberry flavor)
– 1/8 tsp clove powder (massive antioxidants, calms nerve pain, and I love clove)
– ~3 oz apple juice concentrate (malic acid helps clear cellular detritus)
– stevia (stabilizes blood sugar, cuts any lingering bitterness)
 
Whizz it until the flakes of blueberry skin are more or less uniform and quite small.
 
I’ve recently added:
 
– fat pinch of schizandra berries (massive antioxidants, seems to stabilize neurotransmitter behavior; whole berries take extra time in the blender)
– lecithin (improves digestibility and oil uptake)
 
Once everything’s whizzed down smooth, I add at the last minute:
 
– 1/2-3/4 cup blueberry kefir (I really like Lifeway brand, blueberry or plain)
 
The point of blenderizing is to chop open those cells so the nutrition is easy to get to, but with kefir or yogurt, the cells only work if they’re intact. So I whizz in kefir just until blended, maybe 2 seconds.
 
I mix in blackberries and fresh local berries when I can. On the road, I use dried currants, which are an overlooked “antioxidant powerhouse”, in modern marketing lingo. They can make the sweetness overwhelming, though.
 
This afternoon (fruit is more appropriate in the morning, veg in the afternoon) I tried something like this:
 
Afternoon Shake:
 
– Vegetable juice (TJ’s Garden Patch, but I’m open to suggestions)
– Scoop of green powder (I get distinct results from Garden of Life brand Perfect Food Raw; brain really perks up)
– 1/4-1/2 an avocado (cleans up blood vessels, great oil)
– 2 handfuls chopped kale (most nutritious veg per calorie; thanks to TJ’s for taking the work out of prepping organic kale)
– 1 handful sliced cabbage (sulfur for brain, glutathione precursor; also, does something magical to the kale so it tastes smooth and mild)
– salt (reduces ANS/POTS symptoms of dizziness and wonky bp)
– lecithin
– 1-2 individual grains of Epsom salt, a.k.a. magnesium sulfate (sulfur for the brain, magnesium for nerve transmission and electrolyte balance)
– water enough to make it go
 
Has a wonderfully fresh, pleasingly grownup flavor. A bit of cilantro, onion and lemon, and you could call it gazpacho.
 
I’m considering a pinch of curry powder, for the antiinflammatory circumin and that wonderful taste. It doesn’t need it, but it could add a bit of variety. 
 
I’ve often said that it HAS to taste good, or I won’t be able to keep doing it. And, since I test regularly (that is, try to do without), I know I have to keep doing it.
 
And as long as it tastes this good, I’m happy to do so.
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Breathing

Sooner or later, it all comes back to breathing.

Without adequate breath, obviously, nothing else matters. As a sometime ER nurse and continuing asthmatic, I’m more than usually aware of that fact.

I mean something beyond that, though. Something more pervasive.

Breathing, like walking, is one of those things that I keep coming back to as an interesting study — one that’s so fundamental that I forget, in between times, exactly how deeply it changes everything else in life.

I first began meditating in my very early teens, after basic instruction from my mother:

1. Think of a simple, unemotional mental image, like a burning candle flame, and breathe.
2. As thoughts come and go, let them go (sometimes, especially at first, I had to chase them off) then…
3. Bring your attention back to the image and the breath.

The image didn’t do me much good – I think fire is a little too emotional for me – but simply being at home to my breath, and letting the haywire-ness of the day drift off into the mist… with my odd and beguiling little cat softly nestled against my leg under the covers… did me all the good in the world. Especially at 13.

The language of breath is interesting. Breath, spirit, life, and insight often share the same word or sounds in languages around the world. For instance, in English, “inspiration” means both a breath, and a sudden idea; the root word means spirit. There is no divide between these ideas.


(Life, breath, spirit, ideas… how can these be separated? How can a life worth living, let alone a bearable life, let alone a pulse, exist without all of them?)

As I said, I’ve been breathing intentionally for decades. In my 20’s, I taught my ER and ICU patients a particular form of breathing which, I’d noticed, cut their pain response, lowered their blood pressure, and improved the level of oxygen in their blood — no matter what they came in with.

In 3 breaths the difference was noticeable, and if I could persuade them to take 10, we were halfway home.

It goes like this:

1. Breathe in through your nose.

2. Draw the breath all the way down into your lower abdomen.

3. Let it out through gently pursed lips, like softly blowing out a birthday candle.

4. Repeat.

The abdominal breathing improves lung expansion. The slight backpressure on the exhalation nudges extra oxygen into the system (the importance of oxygen can’t be overstated, especially in emergencies) and sends a gentle message to the blood-pressure sensors in the neck, telling them to lower pressure.

This kind of breathing activates the “calm down” part of the central nervous system, that is, the parasympathetic branch of the autonomic nervous system.

The extra oxygen helps clear some of the oxidative damage away.

It feels wonderful.

And it always works.

(Clinical note: for people with COPD, I did 2-3 breaths, and checked in. As with most adults with a chronic disease, they could generally be trusted to sense their limits and stop. Youngsters soon learn, though very few youngsters have COPD.)

Recently, I’ve learned a slightly different technique from the same psychologist I mentioned in my last post…

1. Notice my breathing. That’s all. Let everything calm down for a bit.

2. Draw the breath into my abdomen.

3. Gradually increase the size of those abdominal breaths.

4. Let the midchest join in, getting still more air in. Exhale from the top down.

5. Eventually, let air into my abdomen, then midchest, then upper chest — inhaling from the bottom up. My lungs are pretty fully expanded in the inhale now, and I still exhale from the top down.

6. I tell myself: My arms are heavy and warm. Soon, they are.

7. I tell myself: My legs are heavy and warm. Soon, they are.

8. I tell myself: My lower abdomen is warm and relaxed. The whole bowl of my pelvis becomes a sea of lovely calm. (I had no idea how much standing tension was stored there, at the bottom of the spine and where all the exits are — though it makes sense, when I think about it…)

9. Then I stop contriving my breathing, and let it just flow.

After about 15 minutes, well, life is good. Really good. Talk about activating the parasympathetic nervous system.

I’ve forgotten what else I was going to say. I want to be that peaceful and warm right now.

Oh yeah. The point is this:

Breathing well makes everything better.

It shouldn’t be that simple, but it is.

Excuse me. My limbs need to be heavy and warm… In a good way.

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Unexpected adventures with the rent

Yesterday I did 10 minutes on the treadmill. Today, I walked almost a full mile of this hill in 18 minutes and 16 seconds — no shuffling, no stopping, lots of striding, not much slowing down. Woo hoo!

I’d better start scouting trails and footpaths around here. I’m going to need more options soon.

As I calm my breathing in preparation for my autogenic exercise (more on that later), I have to admit that I had some angst to work off, and that probably had something to do with the pace I kept up.

Last night, I realized I’d lost my ATM card. I have one bank, one card, and one checkbook. … Er… had…

The card was gone.

The checkbook was empty.
I’m fresh out of cash.
And rent is due.
Suuuuuuuuuucks.

Welcome to My Brain on CRPS!

To be completely apt, these should be thoroughly scrambled.

I went to the landlady’s bank to see if we could do a wire transfer.
Turns out they’re closed on Wednesday.

I called a different branch and asked if they could.
No, not without an account of my own.

I asked if I could open an account with a wire transfer.
After 20 minutes on hold, it turned out that I could only open an account with cash or a check.

Rather than repeating myself, I said, “You realize that does me no good.”

I called my bank (a local savings bank) in Massachusetts. They were pleased to tell me that someone had called in my missing card and it had been cancelled promptly. 2 weeks to get another one.

They couldn’t do a wire transfer because they’re rather old-school, and I hadn’t gone into a branch and filed the appropriate form in person.

But — and this is why I stay with them — they didn’t end the conversation there.

After exploring several possibilities, which turned up as dead ends, I thought of Cougar, one of my angels (a word with specific meaning.) He bears a passing resemblance to a slimmer and semi-shaven Jerry Garcia..

A recent photo by yours truly.

But, more importantly, he takes my mail. Why?

In case you hadn’t noticed, I move around a lot. (I’m looking for a place that has an affordable cost of living, good soil, first-rate medical care, and no extra pollution or radiation, and one day I’ll find it.) I’m here in California for awhile for medical care, BUT, no matter where the rest of me goes, my mailing address remains the same.

The benefits are tremendous:

  • Not only is my steel-sieve brain spared the affliction of changing my address every time I move,
  • Not only are my ridiculous paws spared the trouble of wrestling with envelopes and handling papercuts (a task which cougar claws are apparently well-adapted for),
  • But my memory and cognition issues get a real break from having to deal with pieces of effing paper. I have developed a mental block around dealing with pieces of effing paper, so I get them into softcopy as soon as possible.

Or, rather, most of the time, Cougar does… Because he doesn’t just take in my mail, he scans it in and sends me softcopy of anything I ask him to open. This means I have COMPLETE RECORDS of everything I need to keep track of.

He’s the Magnificent Mail Mage, and I’m grateful. Take that, Pain-Brain!

He’s my current Cash Carrier, now. The management staff at my lovely little bank have agreed to work with him as my designated agent, and will provide him with the cash I request — which he will then send to me via Western Union, so I can take care of business here. And with it, I’ll pay rent, open a bank account locally, and try not to let this happen ever, ever again.

Meanwhile, it’s time to get my heart rate down from the clouds and that strangely full feeling out of my tissues. Easier said…

While the excitement is over for the moment, I have a vivid memory of the stress-tracking line on the biofeedback machine, and how bloody hard and bloody long it takes to get the level to drop after it goes up over something as small as one giggle.

This was no giggle. In fact, it was several hours of no giggle. None. A totally giggle-free period.

I found it stressful.

The walk helped. And I hope — when I find some good forest trails to explore — to spot some wildlife.

Meanwhile, I’m off the hook for laundry and shopping. It all has to wait until tomorrow. Bonus!

Everyone should have a little cougarosity in their lives…

 

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Posture matters, across species

For the past forty-mumble years, and for some time to come, my experience of life is shaped by the particular body I’m in. The reciprocal nature of the mind-body experience fills more books than I’d ever want to read, and that’s saying something, so let’s cut past that idea of, “Wow, the mind can influence the body and the body can influence the mind, but neither has sole control of the steering wheel” and look at the subtle, but strangely clear, ways that it plays out – at least in me.

I lived in a dog-friendly marina. – Trust me, this is relevant.

It’s not just about the scenery.
I found that, even before I knew the neighborhood dogs, I could tell which ones belonged on the dock by their posture as they stood, sat, walked, and moved.



I saw dogs in every degree of getting along — or not.

I saw the active posture of dogs who were used to plenty of food and care…



and dogs who clearly weren’t.



This was interesting to me as I was coming out of a period of being thugged on by every force outside myself that had a duty to care for me. Being, not only neglected, but frequently tormented and abused in response to most of my efforts towards survival and care, left me very nervous indeed.

Not good for the brain. Or anything else.

I was having trouble with my posture, and – limited by impaired kinesthesia (the sense we have of where our body is in space) – I was working out exactly what the trick points were.

– My low back was in a tight sway, sticking my stomach and butt out egregiously. I lost over an inch of height to that sway in my back.

– I recently realized that, when I fall back in this posture, my abdominal muscles are braced outward. I’m not slack in the belly; the muscles are braced for an incoming blow!

– My neck was hunched against my shoulders. This was funny because I did used to have a bit of a weightlifter’s neck, short and thick; but that was many years ago… when I lifted weights.

– My tailbone was curled in tight, which I only realized after my physiotherapist at the time taught me to straighten it out as a way of releasing tension on the nerve “sleeve.”

– The points of my shoulders were rotated inward. I attributed this to an effort to ease the nerve opening through my shoulders, but that doesn’t actually make sense.

All of these things reduced effective nerve flow to my limbs, shortened the wrong muscles, limited blood flow to where I needed it most, and reduced my capacity for physical exercise.

And you can see how happy it makes me!

Since activity is key to managing CRPS and keeping the autonomic nervous system under some kind of regulation, this is actually a huge problem.

Good posture is not about vanity, it’s about feeling better, being stronger, hurting less, and surviving tolerably well.

Watching all those dogs running around and deciding whether to let others sniff their butts,

You’re not imagining things: the pit bull is missing a leg.

I realized exactly what my posture looked like: a dog in a hostile area, not wanting to fight, but protecting its spine while bracing for blows. Always ready to snap into action. Never knowing when things will go sour, but pretty sure they soon will.

That’s what those years had brought me to. It was a reasonable response, but not useful.

This is what’s really going on when I fall back into that posture.

I’ve managed to explain this “braced dog” image to my current physiotherapist, who’s wonderfully willing to work with my rather original views. He comes up with ways to tell my body how to stand/sit/move like a calm, alert animal, instead of one that’s braced for the next fight… 

I can’t do anything about the 3 extra cup sizes
this endocrine dysregulation caused, but
my back and shoulders hurt less anyway.

And I remind my too-nervous nervous system that a calm dog can snap into a fight about as fast, but tends to find far fewer of them.

In the meantime, relaxed animals have a lot more fun.

Postscript on self-imaging

Nearly every time I see pictures of someone in regard to posture or movement explanations, it’s someone really fit.

Now, really. Is that who needs to know?

Much as I loathe looking at myself from the outside, using my own image here is preferable to the implicit lie of using others’ figures. So here I am, warts (so to speak) and all.

/shrug/ Could be worse.
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Waiting

I’m sitting in the lab’s waiting room, recovering from the most recent vampire attack.

It’s always a bit of a circus. As I said to the lab tech, “I used to be a trauma nurse. What would be the fun of being an easy stick?”

This time, I had the joyful opportunity of having the first lab tech assess my veins and go find a better vampire without even poking me first. His hands were actually shaking by the time he left.

All I could do was laugh to myself. I used to have hosepipes for veins. They were still leathery, full of valves, and inclined to roll, but with a sharp needle and good technique, you could nail ’em with your eyes closed.

Now it takes 5 minutes with the warm pack (hot water in a blue glove) and the sharpest needler in the house. She got it in one.

In thematically related news… I’ve been essentially incommunicado since I moved into the new cabin. Internet is supposed to come tomorrow and AT&T has knocked $50 off my bill for not providing service yet and having terrible communication with me (losing notes, calling back the wrong week, trying to send me on wild goose chases) when they do get through.

Every effort to do anything other than nest — carefully, gently, and in small controlled increments of effort — seems to take 10 times the effort it should. Not two or three times. 10 times.

All I can do is laugh to myself… and, when necessary (such as when someone’s looming over me with a sharp instrument and a purposeful expression), sitting firmly on my perpetually hair-triggered fight-or-flight response.

As I said to the same skillful lab tech, “I have good doctors, and I’m finally getting lab tests, PT and good care.”

This is why I protect my mental faculties so vigilantly. They let me assess the real risk, the real effort, the real impact of the moment, so I can talk the CRPS-triggered responses down out of the sky.

And then wait for my system to recover.

I think I’m ready to go now.

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Pain rating scales that describe reality

I’m filling out paperwork for these assessments. It’s a lot of homework, especially since they didn’t provide anything I could edit in softcopy. (Wait… how long have computers and the internet been around? Doesn’t the ADA require hospitals to provide access? … ok, never mind. Anyway.)

 
I got to the usual 1-10 pain rating scale and my gorge rose. That’s so irrelevant to my life now that I can’t even throw a dart at it.

 
Between my self-care strategies and spectacular mental gymnastics, the level of what most people would experience as “pain” is a secret even from me, until it’s strong enough to blast through the equivalent of 14 steel doors, each three inches thick. At that point, the numeric level is off the charts.

 
What’s useful and relevant is how well I can cope with the backpressure caused by the pain reflexes and the central and peripheral nervous system disruption this disease causes.

 
You can read on without fear, because for one thing, it’s not contagious, and for another, your experience of pain — whether you have CRPS or not — is uniquely your own. This is mine, as it has changed over the years…

 

Step 1: Acute CRPS, with otherwise normal responses

My first pain rating scale, just a few years into the disease’s progress, was suitable for a normal person’s experience. My experience of pain was still pretty normal (apart from the fact that it didn’t know when to stop):

Mental impact

Physical changes

0

 

No pain at all.

 

1

 

Hurts when I stop and look.

 

3

3

Neither looking for it nor distracted.

 

5

5

Noticeable when concentrating on something else. 

Nausea, headache, appetite loss.

7

7

Interferes with concentration. 
Drop things, grip unreliable.
8

8

Difficult to think about anything else. 

Trouble picking things up.

9

9

Makes concentration impossible. 

Interferes with breathing pattern.  No grip.

10

Can’t think, can’t speak, can’t draw full breath, tears start –  or any 3 of these 4.

Unrated even numbersindicate a worse level of pain than prior odd number, which does not yet meet the criteria of the following odd number.

Note that weakness is only loosely related to pain.  I drop things and have trouble picking things up at times when I have little or no pain.  However, as pain worsens, physical function consistently deteriorates.

Notice how the scale ties the rating numerals to physical and mental function. This is crucial, for two reasons — one personal and one practical:

 
– Personally, I can’t bear to let misery get the better of me for long. Tying the numbers to specific features keeps the awful emotional experience of pain from overwhelming me. Making the numbers practical makes the pain less dramatic.

– Practically, in the US, health care is funded by a complex system of insurance. Insurance companies are profit-driven entities who are motivated not to pay. They don’t pay for pain as such, only for limits on function. This makes my pain scales excellent documentation to support getting care paid for, because MY numbers are tied to explicit levels of function. (Hah! Wiggle out of that, you bottom-feeders.)

 

Step 2: Early chronic CRPS, with altered responses

My next was upwardly adjusted to describe learning to live with a higher level of baseline pain and noticeable alterations in ability:

Mental impact

Physical changes

3

3

Neither looking for it nor distracted.  Forget new names & faces instantly.

Cool to touch @ main points (RCN both, dorsal  R wrist, ventral L wrist). Hyperesthesia noticeable.  .

5

5

Interferes with concentration.  Anxiety levels rise.  Can’t retain new info. Can’t follow directions past step 4. May forget known names.

Nausea, headache, appetite loss.  Grip unreliable.  Hyperesthesia pronounced. Color changes noticeable.

7

7

Absent-minded.  White haze in vision.  Can’t build much on existing info.  Can follow 1 step, maybe 2.  May forget friends’ names.

Drop things.  Cold to touch, often clammy. Arms & palms hurt to touch.

8

8

Speech slows.  No focus. Behavior off-key. Can’t follow step 1 without prompting.

Can’t pick things up; use two hands for glass/bottle of water. 

9

9

Makes concentration impossible.  Hard to perceive and respond to outer world.

Interferes with breathing pattern.  No grip. Everything hurts.

10

Can’t think, can’t speak, can’t stand up, can’t draw full breath, tears start –  or any 3 of these.

Notice how specific I am about what general tasks I can complete — following instructions, lifting things. These are the fundamental tasks of life, and how do-able they are is a fairly precise description of practical impairments.
 

Step 3: Established chronic CRPS

And my third changed to describe living with more widespread pain, a higher level of disability, and — most tellingly — a physical experience of life that’s definitely no longer normal:

Mental impact

Physical changes

3

3

Neither looking for it nor distracted.  Forget new names & faces instantly.

Cool to touch @ main points (RCN both, dorsal  R wrist, ventral L wrist, lower outer L leg/ankle, R foot, B toes). Hyper/hypoesthesia. Swelling.

5

5

Interferes with concentration.  Anxiety levels rise.  Can’t retain new info. Can’t follow directions past step 4. May forget known names.

Nausea, headache, appetite loss.  Grip unreliable.  Hyper/hypoesthesia & swelling pronounced. Color changes. Must move L leg.

7

7

Absent-minded.  White haze in vision.  Can’t build on existing info.  Can follow 1 step, maybe 2.  May forget friends’ names.

Drop things. Knees buckle on steps or uphill.  Cold to touch, often clammy. Shoulders, arms & hands, most of back, L hip and leg, B feet, all hurt to touch. L foot, B toes dark.

8

8

Speech slows.  No focus. Behavior off-key. Can’t follow step 1 without prompting.

Can’t pick things up; use two hands for glass/bottle of water.  No stairs.

9

9

Makes concentration impossible.  Hard to perceive and respond to outer world.

Interferes with breathing pattern.  No grip.  No standing.  Everything hurts.

10

Can’t think, can’t speak, can’t stand up, can’t draw full breath, tears start –  or any 3 of these.

 

The CRPS Grading Scale

The other scales measure the wrong things now. Asking me about my pain level is bogus. It would have the asker in a fetal position, mindless; is that a 5 or a 10? Does it matter?

 
I need to avoid thinking about depressing things like my pain and my disability. I focus pretty relentlessly on coping with them and squeeezing as much of life into the cracks as possible — on functioning beyond or in spite of these limitations.

 
The fourth rating scale is much simpler than its predecessors. It’s based, not on level of pain or disability, but on the degree to which I can compensate for the disability and cope past the pain. Therefore, this rating scale remains meaningful, because it describes my actual experience of life.

Mental impact

Physical changes

A. Coping gracefully

(baseline)

Track to completion, baseline memory aids sufficient, comprehend primary science, think laterally, mood is managed, manner friendly.

Relatively good strength and stamina, able to grasp and carry reliably, knees and hips act normal, nausea absent to minimal, pulse mostly regular.

B. Coping roughly

B

Completion unrealistic, extra memory aids required and still don’t do it all, comprehend simple directions (to 3-4 steps), think simply with self-care as central concern, unstable mood, manner from prim to edgy to irritable.

Moderate strength and stamina, grip unreliable and muscles weaker, balance goes in and out, knees and hips unreliable, nausea and blood sugar instability alter type and frequency of intake, occasional multifocal PVCs (wrong heartbeats) and mild chest discomfort.

C. Not coping well

C

Hear constant screaming in my head, see white haze over everything, likely to forget what was just said, focus on getting through each moment until level improves, manner from absorbed to flat to strange, will snap if pushed.

Muscle-flops, poor fine and gross motor coordination, major joints react stiffly and awkwardly, restless because it’s hard to get comfortable, unstable blood sugar requires eating q2h, bouts of irregularly irregular heartbeat.

D. Nonfuntional

D

Unable to process interactions with others, suicidal ideation.

Unable either to rest or be active. No position is bearable for long.

There is no Grade F. Did you notice that? As long as I have a pulse, there is no F, which stands for Failure.

In the words of that divine immortal, Barrie Rosen, “Suicide is failure. Everything else is just tactics.”

So what’s the point of all this?

Documenting our own experience in terms that are meaningful and appropriate advances the science. The treatment for this disease is stuck in the last century in many ways, but that’s partly because it’s so hard to make sense of it. The better we track our experience with it, the better outsiders can make sense of it.

 
Since studies, and the funding for them, come from those who don’t have the disease, this is the least — and yet most important — thing that we can do to improve the situation for ourselves and those who come after us.
 

This isn’t a bad snapshot of the natural history of my case, either. Understanding the natural history of a disease is a key element of understanding the disease. Imagine if we all kept pain rating scales, and pooled them over the years. What a bitingly clear picture would emerge.

 
I’ve never sat back and looked at all of these pain rating scales together. It’s certainly an interesting mental journey.

 
Important legal note: These forms are available free and without practical usage limitations; to use, alter, and distribute; by individuals and institutions; as long as you provide free access to them and don’t try to claim the IP yourself or prevent others from using it. All my material is protected under the Creative Commons license indicated at the foot of the page, but for these pain scales, I’m saying that you don’t have to credit me — if you need them, just use them.
 

Bien approveche: may it do you good.

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Pushing back on neuroplasticity

I got the Sydney norovirus right before it hit the news. I’m recovering, but slowly; the persistent low-grade nausea is annoying — and worrisome. I don’t want my body to get the idea that this is the new normal…

Brain plasticity is a major culprit in CRPS and its maintenance —
  • from the first refusal to cut pain signals off…
  • to the growth of the brain cortex area that monitors that body part, so it can handle more pain signals and provide less space for normal body areas…
  • to the deeper remapping and rewiring that alters cognition, disrupts memory formation, screws up autonomic signalling, knocks endocrine and digestive function out of whack…
  • and so forth.




It’s important to stay on top of the brain, so to speak.

 
Thanks to the brilliant pioneering work of Dr. V. S. Ramachandran, we now know that mirror therapy and reducing-lens therapy can remap the brain’s perception of injured body parts to something closer to normal. That was a huge help with the pain, when I had CRPS in limited areas.
 
The reality-shattering concept behind mirror therapy is, basically, that conditioning can work in reverse: rather than allowing ourselves to be the passive objects of what our brain becomes accustomed to doing, we can push back against the brain’s alterations using our natural mechanisms of perception and intent. (The basis of Dr. Ramachandran’s discovery is that perception alone can provide the altering input. Intent gives it more focus, force and direction.)
 
The relationship between body, intention, and brain is interactive, multi-dimensional, and interdependent. 

Having said that, it’s not completely reciprocal, nor is it ever under perfect control — unlike a good trapeze act.

 
If we could will ourselves better, then, given the extraordinary focus and determination of my fellow CRPSers, I know for a fact that we would have done so already. I never had met anyone with as much determination as me, until I met my core group of CRPS friends. If will alone were the answer, we’d have it!
 
CPRS is complex indeed.
 
Anyway… back to what we CAN do.
 
Communicating with the brain, in language it can’t ignore
 
The basic principle of RE-re-mapping the brain is this: describing to the brain, in language it can’t ignore (combining sensory perception and intent), what it should be doing.
 
In my Epsom bath article, I described rubbing a washcloth over body parts that have distorted perceptions and telling them silently, over and over again, “It’s just a washcloth. Feel just a washcloth.”
 
Where there is normal perception, or even nearly-normal perception, I stroke from the normal area to the abnormal area — never, ever in reverse! the brain understands the concept of “spread” — and tell my brain and body, with absolute focus, “This is what normal feels like. Feel normal HERE now. This is normal. Feel it here now. That is the correct feeling. It’s just a washcloth. Feel a washcloth.”
 
Not a burning sheet of sandpaper twice the size of my leg. Not a blunt sense of almost nothing, somewhere else.
 
A washcloth, right here.
 
When I’m doing this, I don’t even think about what the abnormal feelings are like; I came up with those metaphors just now, sifting through my memory. I shut the incorrect perceptions out of my mind and dismiss them, over and over, as obviously false information.
 
I have to take a break sometimes when the pain is bad and just breathe, but I don’t think about it, I focus on the point: learning to perceive what’s really there.
 
Vision, tactile input, kinesthesia (meaning that, as my hand and arm moves over the body part, my brain’s mechanisms triangulate on where things really are and its picture of my body gets corrected), and the focus of intent, are all part of the exercise.
 
This combination of factors is what makes it so effective. The multisensory inputs, the constant messaging of proper information, eventually overrides the false information.
 
Slowly at first, but with increasing pace, the normal sensation spreads over into the abnormal area. Every time. Not always completely or perfectly, but often both.
 
So far, I’ve reclaimed normal sensation in my back and most of my left leg, and I’ve kept the sensation and function in my arms at a level almost incompatible with the decade that I’ve had this disease.
 
Considering how bad things have gotten when I let this slide, the value of this exercise is clear to me.
 
Pruning your neurons intelligently
 
Learned responses are due to the basic learning mechanism in the brain:
  1. neurons hook up, and a connection (or association) is made;
  2. if the connection gets used (or the association is allowed to stand), more neurons hook up to make it stronger;
  3. once enough neurons have hooked up, the connection becomes like a good road;
  4. and the thing about good roads is, they get used, even if they’re used for something odd.
It’s important to manage the roads in your brain, especially when you have a neuro-plasticity disease like CRPS:
  • Make sure the roads in your brain are useful to you.
  • Do that by pruning the connections you don’t want.
  • Prune those connections by letting the associations die.
  • Let a connection die by deciding to think about, or do, something else, whenever it comes up.
    Consistently. Persistently. Relentlessly.
  • And keep making that decision every time it comes up.

It works by a negative, which is not how we are taught to do things: turn away from the response, shut out the perception, ignore the link. That’s how you prune an unhealthy connection.

It takes time, but it works. The time will pass anyway, so your brain might as well be better off at the end of it…

Masters of distraction
 
We CRPSers are masters of distraction — not to mention the kind of persistence that this pruning takes. We can learn to be diligent about applying it to sensory associations we don’t want. This is where ADD, used selectively, becomes truly — oh look! Yellow feet!
 
… Wait, what was the connection I was about to make? I’ve forgotten.
 
See? It works!
 
The joy of having a bit of ADD and being a meditator is, you really can choose when and how to let out the ADD — as long as you do it often enough. It’s a great tool, and I’m grateful for it.
 
Pruning specific sensory and functional associations
 
I’ve had recurring nausea for months now. It’s related to upticks in stress, of which I’ve had more than an elegant sufficiency in the past year.
 
Then there was this tummy bug…
 
It’s day 5 and I haven’t vomited in 3 days but I’m still nauseous. While this bug is supposed to leave one nauseous for quite some time afterwards, I really don’t want my brain getting the idea that sending nausea signals is going to be the new normal. I’m not going to let the nausea become habitual. So I’m pruning those connections.
 
I can’t will nausea away, as it comes from quite deep in the brain from a primitive place. And, unlike pain, distraction doesn’t help much for long.
 
So I’m balancing the use of ginger (short acting, “hot i’ the mouth”, sugary) and anti-nausea meds (long-acting, makes me slower in brain and gut) to shut down the nausea for a good part of each day. 
 
This means I’m not nauseous for a good part of the time. This helps retrain my brain away from constant nausea by letting the relentless association, and the neurons that make it, die off. I’m going to keep after it over the expected week of recovery still to come.
Only constructive connections, please.
That’s one example. It doesn’t take much thought or mental discipline, just persistence.
 
My lovely friend X has a recent example of something different, an obviously inappropriate new association being made.
 
She multitasks, making full use of her functional time. When she was eating, then turned aside to the plastic phone or plastic computer to respond to someone, then turned back, her food suddenly tasted and smelled like plastic.
 
That is a very errant association indeed. Prune it!
 
She is now putting aside the laptop and turning off the phone while she eats, so the association doesn’t develop further. Moreover — and she may have just enough ADD to pull this off — she hopes to be able to switch her attention immediately when the plastic taste pops back into her — Look! Yellow feet!
Egrets make great distraction, especially in funny socks.
It takes time to let those connecting neurons die, but if you get on it quickly, as X did, it can turn around pretty well and pretty quickly.
 
The Principle of Primal Exclusivity
 
This is simpler than it sounds. It’s the opposite of pruning.  
 
When you’re doing something really basic (or primal), like eating or drinking or sleeping or running or sex, keep your attention basically on that activity. It helps keep your brain straightened out about those things.
 
You really don’t want them getting bollixed up, because rewiring primal functions takes more work to undo.
 
That’s one reason why insomniac advice is about having a calming bedtime routine and sticking to it: it’s retraining the brain around a primal activity. The brain needs absolutely consistent signals over a period of time, to retrain successfully.
 
Incidentally, sex (alone or together) is the only activity that (ideally) engages both sides of the autonomic nervous system: arousal is mediated by the sympathetic nervous system, and orgasm by the parasympathetic nervous system. It provides a balancing mechanism I can’t think of occurring in any other sphere of life. Done properly, it could be the perfect autonomic tuning tool…
 
And with that happy thought, I’ll leave you to wash your hands against this norovirus and do whatever seems best.
 

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The point of mythology — and there is one

I’m working on a series of 3 novellas, a triptych:

1. Kronos in season: The growing-up of a primal god.
2. Hell — the bright side: The original story of Persephone, the original career woman.
3. Pain, a comedy: the intimate family drama that came down to us as the story of Chiron, the wounded healer — and possibly the first recorded case of CRPS.
(Warning: slapstick and hangman’s humor, sometimes simultaneously.)

I’ve been bogged down on number 2 for the best part of a year. In other words, I’ve been stuck in Hell… heheh.

“That Heironymous Bosch. What a weirdo.” – Good Omens

When asked what I write, I usually talk about CRPS and turning medical science into plain English. When asked what my favorite thing to write about is, I have to say, it’s mythology.

“Wait — mythology? … Why??”

Because myths are about the greater parts in ourselves. Those of us in unbearable situations (like the Newtown teachers or Mother Theresa or, indeed, anyone with a terrible illness) have to be superhuman at times. Sometimes most of the time.

Myths remind us of our innate capacity to reach beyond our limits and own the moment, hideousness and all, so that we can lift ourselves beyond all reason and find a way to make things better.

We have modern myths, like James Bond, Star Trek, the X-Men and Harry Potter.  While they have their limits as myths, they still meet the inward need to see that part of ourselves that can bear the unbearable, survive the murderous, and emerge victorious from a no-win situation.

I should have died at least 5 times in the past 10 years. But here I am, very much against the odds, still thinking (sort of) and writing. Rediscovering mythology played a part in that.

And, more than ever, I find it incredibly easy to tell those enormous stories as if I were talking about real people in real time — because, in my own mind at least, I am. When I write about gods and demons, I’m writing of things I know, although under different names.

You should meet my friends with CRPS — and some of their parents. These people embody powers of creativity, diligence, determination, resourcefulness, strength and brilliance that make the great gods of prehistory look like punks, and leave modern adjectives beggared. Telling myths is easy-pie after talking to them!

If we should stick to writing what we know, then I’ve been to Hell and back so often they’ve installed a revolving door for me. I’ve wept on the knees of Hera. Sedna is my sister. I’ve heard Taliesin’s lament. Coyote has my home address, and comes over (too often) for tea… I have my suspicions about what he puts in his cup — and mine.

I won’t discuss the demons, except to say that they, too, can usually be healed. But it’s always by the thing you wouldn’t think of.

“O..kay.” Checks my head for tinfoil hat. “But what does mythology have to do with CRPS?”

It gives us back the unstoppable inner part of ourselves that can defeat it in the end.

And that’s good medicine.

 

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Recuperating

This picture shows the only thing I can do with any real success right now.

Each time a piece goes in, I soak up the little shot of dopamine that success experiences release.

It might help that, in this friend’s household, it’s mandatory to ring the bell when a particularly difficult section comes together, so everyone can look up and give a supportive nod.

The pattern-matching uses a soothingly primitive part of my visual brain, one that’s pretty much unaffected by CRPS.

The gentle motion of hand and eye back and forth, back and forth, soothes the central nervous system.

What’s ironic is that I realize I’m in recovery from a long damn case of too much too often too fast, but right at this moment, I feel stupider and weaker than I have in months.

I think I’m overdue.

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Something like rest

I thought I would get laundry done today, but I’m still too shaky. I got a good walk in, and finally set up voicemail on my “dummy” phone.

I’m trying to think outside the box with the shattered remnants of my brain. My next doctor appointment is in February, and I expect to be in an intensive 2-month program for March and April. I do need a reasonable place to land, although there’s no knowing if I’ll get a permanent home here.

A package arrived for me up north, forwarded from my mailing address in Massachusetts: a present, several cards, and one or two letters. J, with controlled pain, asked where he should send it all. At this affirmation of distance, I broke down in tears. Once I could speak, I asked him to hold it until I got back. He said, “I like that.”

This forced separation is for the birds, but I’m certain he is fine without me, and that I can’t go back yet.

We went to a great deal of trouble to find a nice place to be, and it was far better than we dared to hope for. My feelings at being driven from it are beyond words.

All right, so it’s a little idealized here…

His brother made it into town last night… but then J’s car broke down at the airport, and he was improperly ticketed… Fortunately, he has AAA Plus and got towed most of the way home for free, and could afford the rest of the trip to the shop. The kindly, dog-loving, competent woman tow truck driver got the car safely stashed and took them all safely home afterwards. How cool is that?

Tow truck drivers can be really cool.

He’s enjoying the visit, though it’s bittersweet. He says it might be for the last time; this brother does not take care of himself, and his next trip will be to go stay with his daughter in another state, where he can get checked out by a whole stable of medicos.

Mortality sucks.

I’ve noticed, though, that J’s voice is stronger and brighter and deeper (a delicious combination!) so I think it’s doing him a ton of good to have someone around who reminds him of being the capable older brother. He was in the upper third of a brood of 9, and it seems he had a real gift for getting things done and making everyone like it… As long as there was an element of mischief involved.

Surprised? 🙂 I’m certainly not. He has the gift of getting others to play. He thinks he’s a lone wolf, but wolves choose their leaders according to who can get everyone to play well together…

There are so many layers of person there, that, even at this distance, and under this strain, he continues to unfold in my eyes. I don’t know what the future holds, but I believe he’s in it somehow.

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