Metabolic moon dance

My digestion is not happy.

Between the stress of househunting (and the way that forces us into other families’ dreadful dramas), some really egregious motels, and too many things hanging fire for too long…

Plus taking that spirochete-assassinating, gut-grating antibiotic doxycycline for three weeks (19 days, actually; those last four pills, I almost vomited just looking at them)…

With a bit too much pain and dysautonomia for a little too long…

Amidst, of course, the infinitely complex metabolic moon dance of CRPS…

In consensus reality,
this is a shot of my old marina’s night lights…
but it’s a great visual metaphor for the body events of CRPS. Fling!
Image c.2008

… Well, things have been better.

They could be a great deal worse, but really, they could be rather better.

I haven’t been able to keep up my kale shakes, because the indigestion is too energy-sappingly unpleasant. My sweetie made a remark the other day that gave me a clue I want to pursue: don’t mix fruits and vegetables.

I used to know that.

I’m going to try berries with kefir and nut butter as the morning shake, and kale with avocado, cabbage and broth in the evening. (And, for the record, I’ve reconfirmed that organic berries are a lot less nauseating in this hotwired system.)

This assumes, of course, that I can get all the ingredients… Handle the blender… Have a place to plug it in… And somewhere to rinse it out afterwards… In the midst of homeless upheaval and chaos… Twice a day.

Editorial comment is useless. There are times when my natural wryness is wholly inadequate to real life.

I’ll let you know how it goes.

Handling my hinges

I had a day off from driving around. After wonderfully quiet morning, I took a walk to the nearest park, half a mile away. The mistletoe was going like gangbusters:

It was shocking to realize how much the tendons in front of my hips had shortened. I had to use a bit of the washing-machine action through the hips, to get a stride more than a couple feet long.

That’s way too hard on the cartilage, so once the washing machine warmed me up enough to stretch without injury, I stretched enough to let me take a tolerable stride without grinding my knees.

There’s only so much my tendons will release, in one careful stretching period. There’s quite a bit of work ahead of me.

I really haven’t been taking position seriously enough: spending so much time driving is not just hard on the torso (which I have managed with better success) but it’s hard on everywhere you bend, especially when your body sucks at bouncing back.

Short tendons in the front of the hip pull your lower back out of alignment, dragging on the front of the spine. This is terrible, as anybody who has ever had the least little bit of low-back trouble can tell you.

The way CRPS makes your tissues less resilient means that a few good stretches will not do what they used to do, back in my 20s and 30s, when 10 min. of dedicated work would put me right back in trim. Like most athletic young adults, I had no idea how good I had it… 🙂

Taking care of my hinges now has to be part of my daily routine. Especially since the driving isn’t over yet. Stretching five or six times a day, like I do my neck, which I’m still losing ground on; walking absolutely every day, or at least six days out of seven. At least it will buy me time, until I come up with something more definitive.

I fight hard to keep CRPS out of my legs in terms of circulation and sensation. Not interested in losing them to any kind of laziness!

The sheer activity of Epsom salt baths

Taking a day to rest has been just the thing.Now here’s what I mean when I say, “I took an Epsom bath…” And I’m sorry to say that getting images loaded will have to wait for another day, so use your imaginations for now 🙂

Nearly all motels have a bathtub. I consider this essential. They’re small, but adequate. With a swipe of cleanser and a quick rinse, I’ve found all of them usable so far.

I should add that baths are not essential to Epsom treatment for CRPS. Here are a couple of tricks I’ve used, with a degree of success which not only included the targeted limb but also improved CRPS for me generally:

  • I’ve immersed my arms in an Epsom solution in a sink or basin. This is great when I’m not up to a bath, but I’m too chilly to sit around with wet limbs. I lean into the basin, with sleeves all the way up, and slosh and slosh and just soak it up. I’ve found that not only does it help my arms, but the relief goes up through my shoulders, down my back, and even my feet feel better after doing this with my arms for 15 minutes or so, 20 minutes if I can stand there that long.
  • When the dysautonomia is being REALLY bratty, I sit with a basin of Epsom solution and a tea towel nearby, and simply wipe the bothersome limb, stroking from healthy area to painful/spasming/misbehaving area, with the same mental chants I describe below…

Both of these strategies work extremely well. Many of us are accustomed to sink baths, and it’s no harder than that — easier, because rinsing is optional.

Temperature – the first consideration

People with chronic CRPS have two substantial issues that affect bath temperature: wonky signals to the circulatory system, and screwy temperature regulation.

Hot baths are a thing of the past. They aren’t good to me any more.

I like a bath that’s just a few degrees warmer than the temperature that feels like nothing on your skin. That seems to provide the best results.

I find chlorine to be counterproductive, so I let it go first. I run the tub a little hot, with the fan on, and leave the room for 5-10 minutes until most of the chlorine dissipates. (This really works.) Then I adjust the temperature.

MgSO4, my ally

I’ve gone up to using about 2 pounds of Epsom salt for one bath. That’s about a third of the 6 pound bag, costing between $3.50 and $6.50, depending on where you buy them. I used to use a cup or two, but I really get better results with a stronger solution.

The process

Remember, this is about re-regulating and re-normalizing, so leaping into the bath and getting busy is the wrong thing to do!

Going one step at a time and persuading my body to stabilize at each point is how the process works.

So I take a couple minutes to just sink into it, let the mottling pattern on my lower body and arms fade, and get some circulation going to my overworked skin.

I brush over all my limbs with my hands, introducing them to the idea of tactile input, and how that should go. This is an important first step, because the touch of a hand wet with Epsom solution is softer than silk, and it’s important to start with the most positive possible sensations. This helps de-alarm your central nervous system as well as re-acquaint your skin with the world. This is supposed to start, and end, as a definitely positive experience. In between, there might be some work.

When working on such deep and challenging health issues, it’s important to set yourself up for success whenever possible!

Back to our bath.

Nearly all motels have washcloths with a nice scrubby texture. The soft kind that you get in the bath and body store feels to me like turgid gelatin, soaking up a lot of soap and doing very little in the way of exfoliation – which is what I used to use washcloths for.

Now, it’s all about renormalization – or, to use the standard allopathic medical term, desensitization.

Leave it to medicine to make returning to normal sound like something bad!

I start with the soles of my feet. If yours are too sensitive to touch, start where you can touch. Remember, set your body up for success. This second pass distinguishes between contact on the surface and underneath, which are two different sensory realms. The first thing I do is go underneath, to the tissues below the surface of my feet, in a gentle and encouraging way.

I hold the washcloth in my open hand, using a big, squishing gesture.

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With that big gesture, and a certain amount of gentle elbow grease, I reassure the soles of my feet that they’re doing fine. Once they start sending appropriate signals of touch and motion, I work around the foot and up my ankles.

Using the washcloth in one hand, and nothing in the other, I alternate strokes, soothing the frazzled burning sensation left by the terrycloth with the silkiness of Epsom water in my palm. The frazzled sensation eases off gradually.

I don’t just notice what the sensations are from my skin, I tell that part of me what the sensations ought to be:
It’s just terrycloth. There’s no burning here. It’s just terrycloth. It should feel pleasantly scrubby, nothing more.

Every now and then, I move the washcloth to a part of my body that still thinks terrycloth is just terrycloth, and give myself a brief demonstration. That seems to help.

Once the signals start calming down a bit, I can go deeper. My calves take a little extra care. I start on the left, and it feels like a hunk of plastic. I tell it to calm down – in firm, maternal, authoritative tones – and go squish my right calf instead. When my right calf and shin are sending nice, normal signals of terrycloth texture in motion, I go back to my left calf, reassuring it that you can be normal, you know perfectly well what that feels like, there you go, you can do it.

Firm, yet loving, maternal tones are hard to resist. It’s a great re-progamming tool for bringing your brain closer to normal.

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Eventually, my left calf loses that awful dense feeling and starts to feel like a leg again.

The next step is to address the surface sensations on up the rest of me.

I coach my skin not to send sparkling messages of hot and cold where the washcloth goes, but just the sensation of terrycloth rubbing moderately over skin, and that that’s okay and the right thing to do.

I work my way up my legs, paying attention to the major nerve path and the major muscle groups (always with big, squishy gestures, not too challenging, but very tissue-mobilizing.)

I go back to my knees a couple of times, where the main effort is to mobilize the circulation and draw away the swelling.

I work on my low back and hips until the inclination to spasm turns off. I tell them to take it easy, just let go, you’ll know when it’s time to contract, now settle down.

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Then I lean forward to dip my arms and work on them, with somewhat gentler gestures. Since I can’t remember just what normal sensation is there, I look for overall warmth and better mobility in my forearms, with touch signals as close to normal as we can get.

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Part of the idea, obviously, is not only to re-normalize my skin as much as possible, but to improve surface circulation, so that as much magnesium as possible can be taken up by the troubled tissues.

Once I have squishy-massaged my arms from fingertips to collarbones, I do a quick scrubby pass on my back (where I used to get symptoms, and don’t want anymore)…

And then I get the Calgon experience, lying back in a warm bath, feeling alive and remarkably well, with nothing to do but enjoy myself until the water cools.

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Speaking to my brain in a way it can’t ignore

Health professionals dress it up in fancy words, but this is what brain plasticity boils down to: our brains take in messages that are so simple and so primal they slide in below the level of words. The way to push back against that plasticity and make it go the way you want, is to address your brain in ways that are simple, primal, and slide in below the level of words – even if you use words at the time. Even in spoken exchanges, remember, 90% of the communication is nonverbal. This is true when we talk to ourselves, as well as others.

With enough persistence, and a persuasive enough message, the brain can be re-reshaped.

Since so much of CRPS’s maintenance relates to the brain having been reshaped in a distorted way, part of the task is to reshape it into a healthier structure.

Dr. S. V. Ramachandran’s work on mirror therapy and lens therapy for people with amputations and other limb pain problems led the way in brain plasticity work, highlighting the very powerful (and nonverbal) effect of visual input on brain remapping.

There are several other ways to do this, including forms of brain retraining such as hypnosis, biofeedback, meditation, specific and clear visualization of painless movement (which, if done clearly enough, can cause brain activity nearly identical to the real thing) – and, naturally, using tones of parental imperative with your own sensations.

Speaking to my body in tones of loving maternal authority, I find, is remarkably persuasive.

Why I start deep and work my way out

I find that it’s often easier to start with deep tissues and then address the surface issues. It sounds weird, but it’s often easier for me to get past the surface sensations when I’m reaching into the muscle and fascial layers, and then, when the deeper tissues are responsive and the blood is flowing through them again, it’s a lot easier and more productive to work out the surface sensations.

Conversely, if I start with the surface sensations, I may not get far enough to be able to dig in to release and mobilize the deeper tissues. Getting halfway through surface pain leaves my body a lot more sensitive to intrusions than just charging in and starting with the deeper tissues.

On the other hand, there are times when the surface simply has to be dealt with, or there’s no chance of getting to the deeper tissues. My left calf was like that when I first wrote this, though it has improved a lot since then.

YMMV. Each of us is different. That is part of what makes CRPS so interesting, and at the same time so darn hard to treat.

Physical issues

In mobilizing tissue, the washcloth provides traction against my skin, so I hardly have to use any hand strength at all. This is important, because if I had to rely on my grip to get hold of the tissues, this would be totally out of the question.

The water neutralizes a lot of gravity, so it’s easier to control a limb you’re massaging. I can squish the muscles with either one hand or two, boof them against the bone, and jostle them around.

I can mobilize a lot of tissue with very little effort, if I use a washcloth in the bath.

I figure I should spend at least a solid 20 min. in the tub, to absorb as much as possible of the magnesium, the warmth, and the chance to melt all the little knots out of my brain. It’s not a bad prescription. Not bad at all. There is always considerable improvement, and sometimes it makes me feel almost completely well.

Not what I expected today

I got bitten by a deer tick right before leaving Massachusetts.

Lyme disease is, of course, something CRPSers are susceptible to, so I took it seriously, especially when the head popped off when we tried to remove it.

A two-tone rash quickly rose and fell with much hot salt water, but it rose again last night and I woke up this morning feeling glandular.

I found an urgent care clinic, called to make sure they take Medicare, and put it on my list of errands on my way out of Scarsdale. I returned one thing, picked up another, stopped at Trader Joe’s to pick up lots of kefir to help with the antibiotic impact, and pulled over at an AT&T shop because my newly-activated Galaxy S3 phone wasn’t behaving well — and wasn’t surfing at all.

(Mine is white.)

Two hours and a great deal of work later, I walked out with a phone I now know is not as unlocked as Negri Electronics said it was (it will soon be available on eBay, once I know what carrier it can use) and a brand new Galaxy S3.

The very capable and helpful young lady who got me sorted out gave me a tip that is probably worth what I’ve lost on the phone: Never buy anything that matters from a company that doesn’t have a customer service phone number on their web site.

What a simple, brilliant filter. No customer service phone number = no interest in staffing for customer service. Do you want any problems dealt with in a rational manner, or not?

The good news is, these phones are so hot I probably won’t lose all that much on my original purchase price.

Then I went to the address of the clinic, according to Google Maps, and there was no clinic there. In fact, nobody at the Family Center had any idea about it. I  should have taken the secretary up on her offer to give me directions, if only to check the address…

I wanted to cross the Tappan Zee Bridge (yes, those of you from anywhere else, that’s the right name) before the construction started tonight. So I did a search for hotels and motels on the other side.

They’re all full, probably with hurricane refugees, and the least expensive room I could find was double what I have budgeted for a single night’s lodging. Most of them were quadruple that.

It was getting below 40 degrees Fahrenheit and very dark. I called my hostess and turned back to Scarsdale.

Safe, warm and fed, this is beginning to look less awful.

It really brings home to me the pointlessness of taking plans too seriously. The linear approach has only ever yielded average results for me, at best; I can only excel in a more seat-of-the-pants kind of way.

It’s hard to accept, because it’s — wow — really, really difficult to start something when you have absolutely no idea what the finish might be, and are necessarily vague about even the next step.

The blind leap is exceptionally challenging, especially with a hotwired fight-or-flight response thanks to dysautonomia.

Try it blindfolded, with live wires stuck in your brain…

But I did get down that birth canal all those years ago, and that was the quintessential one-way leap into the void.

After that, any other trip oughta be a piece of cake. Right? Even if you have to start it twice.

Into hot water.. then cold water.. then hot..

This is a bit odd and I haven’t heard anyone else with CRPS trying it, so I’m just tossing it out to show how weird things can be…

I’m cold intolerant. Absolutely can’t handle it. My body locks up and the pain goes all-body and through the roof.

Can’t take too much heat either; makes me weak and foggy, and can trigger POTS symptoms (in my case, that’s mostly nausea, bloating, dizziness, weakness, lethargy.)

My body temp drops so much when I sleep that I’m cold to the touch. A housemate woke me once when she touched me affectionately as I slept, then found I was so cold that she shook me awake — she wanted to be sure I wasn’t dying. That’s how cold I was.

My first massage therapist, a good friend of mine, insisted I try the hot/cold plunges at Harbin Hot Springs, which happen to be 47 F and 118 F.


I told him that was completely insane and did I need to explain dysautonomia again?

He kept at it, and I finally went there for a few days. I was in bad shape, one of those times when I think I’m not going to live for long because there’s so much that’s so wrong and there’s so little energy left. So there wasn’t much to lose, as far as I was concerned…

At least it’s not an ugly place.

Took two and a half days to work up to it, starting with cool bath/dry sauna, working up to going between intermediate baths, dipping in the really hot for moments, splashing arms then trunk with cold. Eventually I could go for the full plunge. I did 2 full exchanges, and was all right. In fact, I was pretty good. Felt crisp, not chewed.

I went back later and did at least 5 or 6 more (I lost count, truthfully.) By then, I could FEEL my hands and feet as I couldn’t remember having felt them before: exactly where and what and how they were — which was, keenly alive.

I had no pain, no pain anywhere at all, everything was the right color — only a much better shade than I’d seen in years, and my head felt as sparkly as a diamond.

I don’t like to sound over the top, but it was such a feeling of absolute, perfect, poised and healthy ecstasy that words simply fail in the face of that experience.

Being totally pain-free makes us CRPSers high, but this was more than that. Everything worked, from the tiniest microvessel to the least drop of chemical messenger. My cells sang with the bouyant joy of it.

I copyrighted this image… kinda cool. Think I’ll use it as a logo.

I went out to the main pool, actually enjoying the cold roughness of the path on my unharmed feet, and drifted into the “quiet zone”, that is, the temperate pool. Although it’s not etiquette to contact strangers there, an awful lot of people turned to look at me and smile the sweetest smiles. I can only imagine how radiantly happy I looked. I felt that I was glowing brightly enough to light the whole space.

According to my online research, there aren’t many hot springs that have contrast baths at all, let alone to that extreme degree. If they do, they’re awfully coy about it…

I have hopes of a particular roadside hot spring at Yellowstone National Park that runs into a chilly stream. In winter, which it nearly is, that could be worth trying, though it would take a bit of effort.

I’m not sure how slippery it is, what the currents are like, or what sort of work is involved to get from hot to cold. I do have to be mindful of physical damage, until I can really find that cure I’m convinced is just around some corner on my winding path.

We shall see what comes up. I know this is something to add to the repertoire, one of the ingredients to combine into a cure, or something like it.

One more piece of the puzzle… a twitchy, morphing, complex, incredibly irritating puzzle, but one I’m rather stuck with until further notice.

Moderation, part 2 (with footnotes)

Last week’s experimental overdose was not without consequences. There were a couple of days of the most astounding vacuousness, combined with a lethargy and inertia so profound that I find it hard even to remember… Also, record-setting levels of forgetfulness.

So that was the “overdoing on bad stuff” side of the question.

Because I don’t know when to quit, apparently, I did another experiment yesterday: allowed myself to run out of greens, and had a whole day without my Brain Food shakes. That was the “neglecting the good stuff” part, because of course //wide eyes// one must have both the yin and the yang.

Here’s how that went:

I was scheduled for a massage at one, but my massage therapist had (for once) forgotten to change it in his schedule, so he thought it was at noon. As I was leaving the house, I walked through a cell signal (few and far between here) and got the happy blurt that tells me I have a message. It was Ed, my massage therapist, calling to see if I was all right because it was 30 minutes into my session and I wasn’t there. (It’s not like me to be late.)

Here’s the fun part: I stood there, phone in hand, mentally cursing because now I had to go back in the house and look up his number.

While holding the cellphone he’d called me on.

I went back inside to where I keep my cell phone plugged in, looked at the empty space, realized my mistake, cursed inwardly, went back outside to make the call. Before I started dialing, I realized my vision was too bad to drive without my glasses. (It varies with my brain state.) Slightly panicked, I went back inside for my glasses. I didn’t want to forget and drive off without them, which I feared I might be capable of.

By the time I got there, I’d forgotten why I had gone inside, and was very annoyed with myself for wasting time. I stood there, staring into the blurry living room which I could not see across accurately, wondering what the hell I had come inside for and why it was important enough to keep me from driving off.

I went back outside, and was almost at the car…

when I realized, again, that I couldn’t possibly drive like that. Muttering, “Glasses, glasses, glasses,” so I wouldn’t forget again (which I was fully capable of), I went back inside and retrieved them.

I came back out, found my way to the phone zone, and made a slightly hysterical call to my massage therapist. I was now 15 min. late by my time, and an hour and a quarter by his. Bless his golden heart, he calmed me right down, and my day was considerably better soon after.

I’m preparing for a cross-country meander, meant to be conducted within my limits of capacity – mental, physical, and financial – which may be yet another fantasy, but at least it will be an interesting one.

I’ve taught myself 2 important lessons this week, though, and it’s good to be absolutely clear about them before I have so much else to think about:

1. Sugar in strictest moderation. It used to be a matter of avoiding pain, but this was a neurologic meltdown of a depth and duration best avoided in future.

2. Eat my damn Brain Food shake. I didn’t spend all these years figuring it out, just to dis my own discovery. Figuring out how to get them on the road just became the most important job of my life!

Is it just me? I sometimes wonder how many of us, who turn to sweets for comfort and let our distaste for kale exceed our longing to function (as I certainly did until very recently), could be doing so much better.

My pain levels rest very low, as long as I eat right and drink enough water. And my mental function — as, wow, I have reeeeeally demonstrated this week — is hugely affected by what I do, and don’t, get into my system.

  • If I still ate wheat, I’d be so thoroughly impaired I’d be in need of daily care to make sure I showered and ate and — literally — didn’t wander into traffic. 
  • If I still ate corn regularly, I’d be so sore, cranky and ill-behaved that it would be impossible to find an aide to help me. 
  • If I still ate rice I’d regularly be in so much pain I couldn’t think of anything else.
  • If I still ate grains in any amount (even of good quality, as I used to), I’d be nearly immobilized by the extra weight I’d be carrying, making that care even more necessary but even harder to get. 
  • If I ate sweets for comfort, I’d never really find it. But I’d keep trying, probably by eating more sweets! With insulin resistance, it’s a vicious cycle of longing with temporary and partial satisfaction overlaying a bottomless need.

How many undiagnosed food sensitivities and metabolic dysregulations are deepening the levels of Hell in which CRPSers live? Especially given that it’s a disease of the central nervous system, which most certainly does include the gut? It really makes me wonder.

The largest concentration of nerves outside the brain is in the gut, and there’s a breathtaking new field of science about that, called gastroneurology or neurogasteroenterology (it’s only been around for 20 years, so the name is not yet fixed).

Metabolically, I’m just not that weird,  that so many core, neuro-immunologic issues that show up in me could be all that unusual. It makes me wonder if my brain is really all that broken, or if it’s just signalling really hard…

I know how desperately hard it is to change the way you eat, because it means changing the way you have to respond to your most primitive longings at your most vulnerable and achingly needy times. (I have an extremely high tolerance for uncertainty and an extremely low one for needless stupidity, especially in myself, and that has been a great help in working this out.)

It helps to have a structure worked out and some sort of support: hence the success of Weight Watchers and clinician-approved eating patterns like the Stone Age diet or the South Beach Diet.

These dramatically different strategies coexist because … drumroll please … we aren’t all the same! Some will work on some, others will work for others.

Personally, I’m intrigued by the immunological component of digestion and assimilation (another key characteristic of gastroneurology), best addressed by the Blood Type bouquet of diets. The Type O eating pattern (with added wheat) was what I did naturally when I was fit and well, and guess what, I’m type O.

mmmmm, lunch!

But things have gotten weirder since then…

Now that I’ve finished my tea, it’s time for breakfast. Guess what that’ll be? 🙂

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What comes first, comes first

Hard lesson I keep re-learning: My very first priority is taking care of this bodymind complex. My very second priority is taking care of my relationships. Studying and writing about this disease and everything that relates to it … no better than third.

No matter how fascinating a line of inquiry is… no matter how badly I want to make that conference call… no matter how scintillatingly brilliant that blog post that’s unrolling in my head will be…

Something else has to come first.

If I haven’t had my brain-food shake, or it’s time for a massage, or the phone is ringing and it’s someone I haven’t connected with in awhile, then shake or massage or phone comes first, in that order.

And then, CRPS doing what it does to attention and memory, whatever I had on my mind beforehand is gone. Taking notes, unfortunately, doesn’t work — I’ve tried it. Notes work for those whose brains maintain networks of ideas, who can trigger a cascade of memories from the brief mnemonics. I’m working to get it back… which brings us back to the first priority.

And, I’ve found over the years, the second priority is inextricably linked to the first — directly and indirectly. But I think that’s a whole ‘nother post, all by itself.

I’ve been a Type A worker for about 24 years. Relaxing does not come naturally, but I’ve learned to manage it in reasonable doses. Losing work is bad enough, but losing it before I’ve even had a crack at doing it is, well, what those with pithier vocabularies call a mindf!ck.

Knowing that I’ll probably lose the work, and making the choice to go ahead anyway, takes more discipline than I always have. But — despite the learning difficulties — I’m getting better. Even I can learn to keep my priorities in order.

Recipe: Kale Shake & the Sunshine Band

Being able to manage means having enough brain and energy to work with. In recovery from a major setback, that means getting down enough kale and berries to choke a couple of horses.

The most manageable way for me to get them in is via my handy little one-person blender. It keeps them raw (maximum nutritional value) and prechews the kale, which can really be troublesome after the 3,000th bite.

Here’s my basic recipe. Options and rationales are below.

– handful of berries (I prefer blueberries and cane berries), or 1/3-1/2 a half-pint container.
– about 1/2 cup water (helps soften berries)
– 3-4 medium to large stalks of the fluffy kind of kale, called “lacinato kale.” 7 or 8 stalks of the smooth variety. Chop in strips ~1″ wide, depending on blender strength.
– about 1/2-3/4 cup apple juice or cider.
– 1/8-1/4 teaspoon cinnamon.

– Options:
   = Dessertspoon of nut butter or a slosh of yogurt, for protein and a bit of oil/fat to help me absorb all the nutrients.
   = Pinch of stevia powder: adds sweetness, further aids with blood sugar stabilization.

Kale: given the quantities I eat this in, it has to be organic or I’m in strife.

Berries: I use either fresh or frozen, whatever is available and affordable. Always organic or close to it, because industrial growers use lots of pesticides on most berries and they’re hormone-based (estrogenic) – I used to live near strawberry country and the spraying was really obnoxious. I tried using berries grown by industrial methods, to save money, but it put me on a horrible hormonal roller-coaster… 2 solid weeks of PMS? Not so good.

Cider/apple juice: provides malic acid, which helps clear garbage out of the cells. Also helps cut the bitterness and predigests the burpy stuff out of the kale. Use a splash of raw cider vinegar if you have to use another juice.

Cinnamon: It cuts the bitterness the rest of the way, and helps stabilize blood sugar. There’s a lot of sugar in this, for me. You wind up not tasting it, but the shake goes down better.

Options: I often add the nut butter. The resulting texture is creamier. The yogurt, even a little bit, makes the shake more filling, so it’s good for making it feel like a meal.

I recommend adding a bit of oil/fat, because it’s so important to squeeze all the nutrition I can out of each bite (especially when nausea makes eating unpleasant) and oil or fat helps with the absorption of key nutrients in this shake.

I also find that pain is less and thinking is better if I get adequate fat in my diet, meaning, a moderate amount more than I need to absorb this nutrition; one day I’ll remember why.  It rings a bell from my nursing school classes. Might relate to the demyelination issue in chronic CRPS.

If I don’t add a bit of something oily to the shake, I have a slice of aged cheese or meat, which provides brain-friendly fat and also gives my body neurotransmitter precursors — adding more oomph to the brain-value of what I’m eating.

It’s an uphill slog but I’m determined to get better again. These shakes really help. Trouble is, there’s only so much room in an individual tummy, and I do need to stay under a bearable weight and eat other things to stay in balance.

Sigh… It’ll work out. It’s hard to be patient enough, but healing in the face of profound illness does take time. If there’s one thing I’m learning, it’s patience.

Time for another shake…

Not even anger is wasted

I’ve been struggling with how to make certain changes when my mind and body are so intolerant of change. I’m not naturally intolerant to change — quite the opposite! — but CRPS makes changes cost me a whole lot more.

Selling my home of 6 years, moving twice in one month to different regions under difficult circumstances, starting a relationship (which quickly became long-distance), having a setback with CRPS, and getting a windfall, is a heck of a lot of change in less than two months.

Some of them are good changes (for a change, ha ha) and am I ever grateful for that! But they cause significant shifts in the mind, which causes significant shifts in the body. …With chronic CRPS, there’s simply no practical difference between physical shifts and mental or emotional shifts any more. The domino effect is complete.

I had malabsorption syndrome for a few weeks there, where all my food went whizzing through me and I couldn’t get much nutrition out of it. It has settled down, but I still have considerable endocrine weirdness and I’m gaining too much weight (more than my intake should cause.) This means my feet and knees are under still-heavier attack from CRPS and fibromyalgia.

I find this disturbing enough to be frightening — if my feet get wiped out, there goes my one good form of exercise — until I got reminded of one of those things I used to know, back when philosophy was easy, before this past decade’s descent into Hell: “Fear and sorrow inhibit action… anger generates it. When you learn to make proper use of your anger, you can transmute fear and sorrow to anger, and anger, to action.”

That’s from Millman’s Way of the Peaceful Warrior, a book I couldn’t read for years because allegory’s contrived tone always put me off. One of the great advantages to getting my butt so severely kicked for so long is that I finally shed a lot of intellectual arrogance; I can now stomach the clumsiness of allegory, if there’s something worth gleaning from it.

That tip alone might be worth the effort. I’ve got plenty of anger, and rightly so. Rather than always managing it out of sight, I can dump my fear in there, where I can use it.

Chosen change is mine. Make way.

Brain fog …and living anyway

I’ve been struggling with chronic brain fog for awhile. I generally wait for a clearer time to blog, but I’m not sure that’s sensible. It’s been ages.

This could go on for quite some time, especially since my figuring out how to fix it is going to involve a better-functioning brain than I’ve been able to bring to bear. Or else a flash of insight. Or a tremendous stroke of luck. Possibly a gift from the great good gods. I’m open to all of that!

The old idea was that it was silly to post unless I could post something I’d be happy to reread, and I can tell when I’m not happy to reread something if it gets changed or deleted. I’ve been changing and deleting  more, indicating a certain amount of wasted effort.

I’m beginning to think it’s silly not to post. This is life with CRPS, after all. It goes on, whether I’m ready for it or not, and frankly, it does involve a certain amount of apparently wasted effort.