Ted’s Talks #1: know yourself best

A fellow martial arts teacher/competition judge once barked at Ted Mancuso, “None of your students move like you!”

Ted blinked, barked back “Good!” and walked away, shaking his head.

He refuses to model a move more than the essential minimum, and is no great fan of the mirror, either. However, he will coach the most clueless student with bottomless patience, week after week, as long as they don’t give up.

His model of teaching is based on the (all too rare) assumption that each of us should be the person most aware of, and most in charge of, our own bodies.

… I know, right?

If you follow the logic through, this implies that the correct structure for moving through, say, Fair/Jade Lady Weaves Shuttle (which is an upward block snappily followed by a nose break, which tells you something about those names)… as I was saying, the most effective and correct structure for that move is going to vary from one body to the next. The correct structure for HIS configuration of bones, ligaments, muscles, and chemistry is not going to be the most correct (or even passable) structure for MY configuration, or yours, or anyone else’s.

Ted doesn’t just say that, he bases his whole approach on it, from start to finish. His crogglingly refined sense of how to read that on others is probably another article, or rather book. Gifted pedagogue, yes.

In the long years of wrestling to take back control of my body from CRPS and all its ghastly little friends, I’ve taken PT for months, done intensive massage therapy ditto, and been overdosed on nearly every class of drug used to treat it — except the ones I flatly refused.

This inward/martial training with Ted is the first one that not only requires physical self-awareness, but actually helps me learn that awareness from the inside out, rather than passively requiring me to learn it from the outside in.

Once I gave permission for him to go to town on my structure, it would be tempting to say that he’s become merciless. That would be totally wrong, in both senses. He lives in an ocean consisting of equal proportions of mercy, humor, precision, and a degree of awareness of others that seems uncanny until you reflect that he’s been working on that since I could walk. So, yeah, he’s got that healer’s mercy that means he’ll do what’s right for you even if it sucks right now.

I’m now on the second round of fighting with my low back and hips for control of my spine, and it really sucks right now.

I am tired of trying to unlearn 40-odd years worth of faulty structure from the inside; it hurts, and more pain is tediously wearing.

So I found a massage therapist who suits my needs, and went to line up a series of sessions.

First available time?

3 weeks out.

… I know, right?

I came for a hot tub and chiropractic adjustment (which I believe is within spec for Ted’s style, given the intransigence of bony tissue and the ubiquity of hot water) and sat there letting my knotted thoughts and knotted muscles melt… until I smacked my forehead and started to laugh.

Why is my low spine putting up such a fight? Why has it kept falling back into the same darn reef-knots, despite the PT and massage and Round 1 of this struggle last year and so on?

Right.

It’s obvious, now that I think about it. There are no shortcuts! I have to learn how to identify, unravel, and rebuild those structures from the inside out. That’s the whole point. That’s why I undertook this training. This is exactly how it’s supposed to happen, aches and all.

This is me, having another laugh at my own expense, releasing one last sigh, and figuring out how to do this from the inside.

I love that teacher. I don’t exactly like him a lot right now, but that’s okay.

The Bean Dip Response, companion to the Spoon Theory

Those of us with crazy-bad illnesses appreciate the stroke of genius from Christine Miserandino, who originated the Spoon Theory to explain what it takes to get through the day.

For the most part, though, we shouldn’t have to explain much. Wouldn’t it be nice if everyone could get that memo?

To that end, here is a great article by family therapist and parent counselor Joanne Ketch on parenting boundaries, using the Bean Dip Response: http://www.joanneketch.com/ParentingChoiceBoundaries.en.html

With her permission and kind support, I’ve revised her article to reflect the realities of the chronically or severely ill. Please feel free to print out/pass on, with credit to her embedded as it is in this text.

Here’s my version…

Health Management Choices – Boundaries

A long time ago, as a developing patient educator, I found many chronic patients uncomfortable and frustrated with unsolicited advice – or inadvertently soliciting advice and then feeling uncomfortable with the discussion that followed.

Eventually, I read this great article on boundaries that eventually become known as “The Bean Dip Response”, “Pass the Bean Dip”, or even used as a verb: “bean dip” someone.

I rewrote the article from the perspective of a chronically ill, alternative-using or drug-disabled patient (one who can’t use common meds for the condition because of uselessness or devastating side-effects) – but the principles are transferrable to any constellation of health management choices.

The Bean Dip Response is best used when you don’t need to defend or don’t wish to engage with a person over a health management choice. If you are discussing issues with a person and you welcome their feedback, the Bean Dip Response is not needed.

I’ve found that chronic patients may confuse boundaries while trying to convince someone of the rightness of their choices. The best thing is to assert your boundary, rather than defend your choice. Your choice needs no defense.

Health management choices should be on a “need to know” basis. Most people don’t “need to know”. Since medical information is highly confidential, it’s NOT incumbent on you to explain yourself to those who don’t need to know. Those who need to know are essentially you, your doctors/providers, and your designated decision-maker for when you can’t make your own decisions.

If anyone else asks, "How are you sleeping?"
Answer: Great! Thanks for asking! Want some bean dip?

"Are you sure you should get picked up every time your legs flare?"
Answer: “Yes! Thank you! Want some bean dip?"

"When do you plan to wean off those meds?"
Answer: "When it's time. Thanks! Want some bean dip?"

"You should use my aunt's hairdresser's physiotherapist's product. It cleared up her [symptom du jour] in two weeks."
Answer: "That's great! I'm happy for her. Want some bean dip?"

Now, with some people you will need to set firm boundaries. The offer of bean dip won’t be sufficient to redirect them [I can’t imagine why not. -ed.] They either don’t respond to gentle redirection or they have emotion tied to the issue and a desire to “go there” more deeply. You may be able to anticipate this – if it’s a pattern of intrusion, for example, which you’ve seen in other circumstances.

In such a case, a stronger “Bean Dip” response may be needed. In these cases, the redirect will need to be backed up with action (like hanging up, leaving the room, or even unfriending them).

Remember, boundaries are not about forcing another person to comply. You cannot “do” that. Boundaries are about what YOU will do or not do. You are the person you own. You don’t own them and they don’t own you.

Practice kind but firm responses: "I know you love me and want to help. I am so glad. My health choices have been researched and made. I won't discuss it again.”

Don’t confuse setting boundaries with trying to convince someone of the rightness of your choices. It’s a common (and understandable) desire to present the same information that led you to your choices. The problem with that in dealing with a person who has boundary issues is that engaging with content invites discussion. (Also, different people’s minds work in different ways, so your train of thought may make no sense at all to them. Wasted effort all around.)

Chronic patients often struggle with this.

The boundary is that no one else has an inherent right to tell you how to take care of yourself.

You set boundaries by doing the above: acknowledging what they said and redirecting.

Where the chronically ill may invite problems is by citing authors, studies and sites to “defend” themselves. Each time you do so, you create more time for discussion and rebuttal and send the message that your decisions are up for debate.

Don’t defend your choices beyond generalities, and then only once or twice. “My doctor is in support of my choices. Want some bean dip?” Or maybe, “Well, this is my decision. Want some bean dip?”

If necessary, look them in the eye and say simply, “I want us to have a good relationship. I want to enjoy my time with you. I’ll take care of me, so that we both can make the most of our time together. Let’s not discuss this anymore. If you bring it up again, I will have to ask you to leave.”

Finally, an important corollary to the “Bean Dip Response” is reciprocity. Once again, the content of your choices should not dictate the interaction.

You may be totally, and correctly, convinced that you should be able to determine your own activity, medication, and supplementation regime; never be left to “cry it out”; and should be allowed to follow your own weaning path, if any.

But, if you post those opinions on Facebook (or communicate them in other ways), you invite (and therefore solicit) feedback and advice. Post accordingly and respond to comments with that in mind. You need to give the “other side” the same respect that you expect to receive.

Credit for original: Joanne Ketch, MA, LPC, LMFTa, LCDC
http://www.joanneketch.com/ParentingChoiceBoundaries.en.html

For those of us who are chronically ill, there are people we DO need to explain ourselves to. However, these are mostly highly educated people with specialist training, and that makes it a short list indeed.

Our loved ones may believe they want to understand, but, as my mother finally admitted, “I don’t think I really do want to understand what you’re going through. I couldn’t stand to know how much pain you’re in and how rotten you feel all the time. It would drive me crazy, knowing that.”

But, hoo boy, does she ever respect my boundaries! That’s worth the world. It makes everything open and clear between us, and our current relationship reflects that.

When someone confesses their limits to me, I take it as a gift. They have told me how to protect our relationship and how to move forward with it. I appreciate that. With that subject opened, we can move on to discuss how, or if, they can connect with me in a way that works for us both. This is priceless information. I’m glad my mother had the courage to open that can of worms, because then it got very manageable very quickly.

For an ever-changing kaleidescope of visual delight, check out my Mom’s photography from all around the world at http://jldtifft.com/

Winter Recipe #1 – Cyano-berry brain booster, with special maple syrup notes

I view a recipe strictly as a starting point.

To some, recipes are instructions to be followed. That’s probably very wise.

To me, they’re a series of friendly suggestions, and every ingredient (except baking powder) has the unspoken caveat, “adjust, substitute, or mess with, to taste.”

The recipes I post are decidedly Isyan recipes. Even if I haven’t made them yet, I’ve made many similar things over the years, so I know they’re in the right ballpark. If you’d like to use them, please do — and realize that every ingredient here carries the implied caveat, “adjust, substitute, or mess with, to taste.”

With good ingredients, you can’t go too far wrong.
antioxidant_foods
When it comes to canning and preserving, I do what I do, but I suggest you follow the instructions you can read at any credible site on the subject. The USDA guide is here.

Cyano-berry Brain Booster

The point of this is to provide a stonking great dose of those anthocyanins and antioxidants which have consistently demonstrated that they help my memory and thinking. This is not desserty at all. I think it makes a great breakfast.

Ingredients:

  • 2.5-3 oz dried organic schizandra berries.
  • 1 Qt/Liter organic concord grape juice.
  • 1 small finger (~1-1.25 inch [~3cm] long piece) fresh ginger, or equivalent powder, to aid digestibility.
  • 2 Tablesp (rounded palmful) ground clove.
  • 1 Tablesp (scant palmful) ground cinnamon.
  • 3 Pounds/1.4 kg wild Boreal blueberries, wild (farmed) blueberries, organic currants, organic bilberries, or the most nutritionally dense, fresh or frozen dark-blue berry you can get your hands on.
  • 3/4-1 C (6-8 fl. oz., or 180ml-240 ml) non-osmosed maple syrup (see note below.)
  • 1/4 C (60 ml, or slightly overflowing palmful) ground chia seed.

Preparation:

Put the schizandra berries into the grape juice. Write the date on the bottle, along with the date 3 weeks on, and stick it in the fridge for 3 weeks. The rest of this waits until the schizandra berries are thoroughly steeped.

When you’re ready to make it all up within the next half day, then blend the berry/juice brewage until the schizandra seeds no longer sound like grit hitting the blades, but like very fine sand. Give it at least one minute. (I wear ear protection for that part, or leave the room.)

Grate the ginger fine.

Grind the chia seed in a spice or coffee grinder.

Rest if needed, then aim to finish the tasks below in one session.

Making and canning:

Put 6 quart bottles and new lids into a deep, lidded pan. Once they have boiled for the recommended length of time, you can turn off the heat and leave them there, good and hot and covered.

Combine the ingredients you’ve already prepared in a large pan. Add the spices and maple syrup. Mix everything well, so the spices are thoroughly incorporated. Add the maple syrup and blueberries. When it starts to simmer, turn the heat down to keep it simmering and stir the chia in, mixing well. I leave it loosely covered and let it cook for 5-10 min. I want to preserve the anthocyanins and the volatile spices, after all, not boil them to distortion and death.

Set the jars and lids up so it’s easy to transfer stuff from the pan. When you fill the jars, leave headroom — don’t fill into the neck. Try to keep anything off the lips of the jars.

Use your favorite clean absorbent material to wipe any dribbles or slurps off the lip of each jar. Each lip should be absolutely perfectly clean, with nothing to interfere with the seal you’re about to create.

Lid, band, and tighten each jar. Return them to the pan they boil in. Boil according to your canning instructions.

I actually boil them for about 5 minutes — this is just clean fruit, with preservative spices. I’ve had no problems, except for one batch that didn’t get the final boil because the fuel ran out. It got a bit fizzy after awhile, and wound up giving me half a quart of the best sparkling spiced-blueberry wine ever, plus half a quart of inedible spiced-blueberry sludge. Overall, a happy accident 🙂

Equipment notes:

I wash everything well, with hot water and soap, before I even boil it. They always put seizing of some sort on new bottles and pans. I can’t stand the taste, and I can’t say it’s likely to be good for me.

Ingredient notes:

Clove is a shockingly strong antioxidant and it helps reduce nerve pain. Having said that, it also has a very strong flavor. If you’re not extremely fond of it, that’s the first ingredient you’ll want to adjust. However, I love it, and I can eat this stuff day after day.

Schizandra berries are called, in Chinese, “Five-flavor berries.” They incorporate the flavors of sweet, sour, bitter, salty/savory, and the fifth flavor we don’t have a word for in English, but if you mix fresh-dug peat with barley malt and plum paste, you’re probably close. I happen to like them, but I’m notoriously odd — and internationalized. There’s no question that they’re amazingly good for the brain. Try them and see. I prefer them to goji berries by a long way, and a lot of people can choke gojis down.

Maple syrup is not what you might think these days. Traditionally, sap is collected from sugar maples during the first real warm spell in early Spring.
maple_syrup_tap
It’s then simmered down to syrup consistency, and the scent of it can drift for a mile downwind…

Most modern producers use reverse-osmosis filtration to reduce the volume of the maple sap, sucking the minerals and much of the flavor out of it, then boil the remainder just enough to say they did. The filters themselves are considered so toxic that they have to be sent to the landfill; all those wonderful minerals that get caked up on it are considered to be no longer fit for human consumption, and must not be used for anything that might possibly wind up in the food chain, according to a representative from one famous and otherwise delightful sugarhouse.

In the end, with reverse osmosis filtration, you get expensive brown sugar syrup, without the kick or the minerals of maple syrup. It all tastes much the same — like good brown sugar made into syrup. Traditional maple syrup, on the other hand, has “terroir”, just like wine. Its flavor varies from place to place, depending on the soil, water, bedrock, and microclimate. The Shelburne/Heath terroir has a refined floral foretaste that has to be tasted to be believed. Right over the ridge, in Ashland, the syrup has a deep earthy note like really great whisky. How awesome is that, eh?

The natural/organic syrup producers I wrote to are fine with the highly artificial process of reverse osmosis, as it saves fuel, which reduces their carbon footprint. Standard practice in that group seems to be to osmose the sap until it’s about a third or half the volume (“two passes”) and boil it down the rest of the way. They “feel” (this tells me that they didn’t get out the test tubes and check the nutritional changes) that they “retain the best of the flavor and nutrition of the syrup.” They really don’t — I can always tell when it’s been osmosed, and a few years ago I went taste-testing hundreds of miles through prime sugaring regions to be sure. I dropped a lot of money on tiny little sampler bottles just to make sure I was not imagining things.

The real test is this: the maple syrups I got from standard supermarkets, Trader Joe’s, and Costco made me hurt. The maple syrups I get from my producers who boil it all the way down does not make me hurt. So, as far as I’m concerned, reverse osmosis either puts something in that hurts me, or takes something out that stops the hurt — but, in either case, osmotic filtration hurts me, and I’m not going to pay money for that.

I use maple syrup in order to have a nutritious, painless and digestible sweetener, so I want the stuff that still has that nutrition and digestibility. It’s a bit pricier than the osmosed stuff, but a pain-free gallon lasts nearly a year in my tea and occasional grain-free pancakes, so it’s money well spent.

Buyer beware. Call and ask the producer if they use reverse-osmosis filtration, or if they boil the raw sap all the way down. I don’t recommend discussing it, just asking… New Englanders are not easily persuaded. They’re generally realistic and decent, though, so if the producer you call uses reverse osmosis, ask if they know someone who doesn’t. If they know someone, they’ll tell you. They might even get you their number.

I got my last good, fully-boiled-down batch from a friend of a friend: Jerry Smith at Deer Ridge Farm, 4057 Hinesburg Rd, Guilford, Vermont, (802) 254-3540.

View Larger Map
He’s on country time, so be ready to call and remind him to post your package if you don’t see it in a week.

Most of the fully-boiled producers do NOT seem to be part of industry groups (e.g., the Massachusetts Maple Producers Association, where I wasted a lot of time contacting members only to find that all those who bothered to return my messages used reverse osmosis.) They’re just farmers who happen to have sugar maples and some equipment, to keep themselves from getting bored during “mud month.” You have to be there to find them — or have good connections, like me 🙂 If any of you New Englanders or Canadians have other fully-boiled-down producers to recommend, please do — the more, the merrier, and it’s good to have fallbacks in a weather-sensitive and seasonal industry.

Note on posting: Priority Mail Flat Rate boxes are the cheapest way to ship heavy things like quarts or gallons of syrup in the U.S. If you need to use international mail, better figure out your best strategy for that ahead of time, since that isn’t in a rural U.S. farmer’s normal frame of reference. A quart of syrup weighs around 3lbs 2 oz (1.45 kg). A gallon weighs around 12 pounds (5.45 kg). These are not exact, as weight varies slightly from batch to batch. It is, after all, a handmade product.

Carriers who ship outside the U.S. include the United States Postal Service, DHL, Fedex and UPS.

Prelude to winter canning recipes

Don’t you love the change of season? Especially here in Middle Cali, where there’s a hint o’ green to mark the second of our two seasons — Drought and Mold.

But seriously… I just had my first blueberry-clove shake in awhile, and boy am I glad I remembered about them. I’m actually stringing a thought or two together. Not eloquently, but let’s not be fussy, ok?

It’s worth noting that I’m staying off social media until I’ve finished a couple of very important projects. I’m using my brain time in a highly focused manner.

Why? Because the seasons are changing, the barometer is bouncing around like a honeymooner’s pillow, the solar radiation (between eclipse, sunspot the size of Jupiter, and X-class flares) is doing the hesitation waltz ALL over my nervous system, and my otherwise lovely partner is genuinely addicted to TV so I have that constant, impersonal nag grating against my brain.
Sketch of brain, with bits falling off and popping out, and a bandaid over the worst
If I weren’t so well-equipped with irony and sarcasm, I’d be howling like a princess with a split nail right before her prom date.

So I remembered about my blueberry clove shakes. This reminded me that I need to prepare for the REALLY hard times that winter brings. And that made me think that there are a few principles to keep in mind for my dietary framework:

  • Vegetables. Lots of healthy vegetables.

    I have that covered for emergencies already: vegetable juice with one of those thought-out “super green” organic powders (my choice is Garden of Life’s Perfect Food.)
  • Anthocyanins in ridiculously strong doses. This is key for my brain function. Huge.
  • Something for bad pain.
  • Something for bad pain with a different protein profile, to lower the risk of developing an allergy.
  • Immune support. Winter, right? Virus heaven.

Brains which are under siege need appropriate saturated fats. I know, I know, we’re told they’re bad. Back up a bit and take a look at that, because it doesn’t hold up to closer inquiry. What we don’t need are INappropriate saturated fats, which, admittedly, are most of the ones in the grocery store.

Chocolate, coconut oil, organic palm oil, and pastured butter are appropriate fats. These are well within the kinds of foods we have been eating for thousands of years, if not longer.

One reason why a bite of something fatty is like an instant lift. The saturated fat goes right to the brain’s pleasure centers. The brain knows what it needs, and we’re wired to like it.
glee
It’s up to us to use appropriate forms of fat, which our bodies can reliably use.

When I’m fighting off a virus, I crave raw coconut, coconut oil, coconut butter, or coconut milk with a gnawing passion. I’m old enough to do what my body tells me to. Interestingly, studies are coming to light showing that just the coconut oil has real benefit for fighting off viruses, among other things. Imagine what we’ll find in the rest of the nut, one day.

For pain, I find that half a tablespoon of 100% grass-fed/pastured butter is better than a pain pill. (It cuts the pain dramatically but doesn’t make me goofy at all.) It doesn’t always last for more than a few hours, but there are no side-effects that aren’t healthy: it makes my heart stronger, helps stabilize my immune system, and reduces my tendency to pack on weight. I’ve found this to be consistently true over the years, and, since it doesn’t match our expectations of dairy fat, I checked the science.

For a fairly extensive and science-supported discussion, look here. I’ll provide some highlights.

100% pastured bovine fat, of any kind, is such an effective anti-inflammatory that it can reverse heart and vascular damage. I’m not sure why it helps moderate my weight, but I suspect it has to do with cleaning the metabolic pathways.

Conventionally-raised or grain-finished cattle are sensitive to grain, as a species, so they have ongoing low-level immune responses to their feed (even without the steroids and antibiotics normally used in beef and milk production.)
feedlot-NRCSAZ02094_-_Arizona_(471)(NRCS_Photo_Gallery)
Naturally, the histamine outfall, metabolic garbage, and fats get stored in their flesh, milk, and fat.

That’s how animal bodies work — a lot of stuff gets concentrated in our flesh and stored in our fat, and if what went into us isn’t right, what gets stored in us isn’t right, either. That’s why people pay so much for the grass-fed stuff.

Now you know 🙂

Getting pastured butter is not hard. In Ireland, grass is cheaper than grain, and (unlike New England or Wisconsin) it’s available nearly year-round.

Gorgeous black and white Frisian cows grazing deep green grass with colorful, healthy fields patchworked down to the edge of a body of water.
Breathtaking shot of Irish cows from Richard Webb

Next time you’re at a major supermarket, grab yourself a block of Kerrygold butter and try a slice on some non-inflammatory food, like a dish of steamed veggies.

Go on, try it…

Now you know what’s behind the recipes I’m going to post next.

Autogenic training — calming the CNS in the nicest possible way

I have to fling this file up onto my site and write the supporting material later. I’m trying to do a lot on very little steam, so forgive my slapdash approach. There will be a readme to go with this next time. Believe it or not, there’s a reason for every single line 🙂

Anyway, this is the (probably) final draft of the first autogenic training script I’m writing for my charity, CRPS: Art & Spirit. It will be read in and turned into an mp3 in the fullness of time, which will also be available under the same Creative Commons license, so please do share.

Meantime, if I say it myself, just reading this is soothing to that frazzled ol’ autonomic system 🙂

Now, let’s see if I can load the whole pdf here… direct link to brain-soothing script

Indirect link to script:
autogenictraining-no1-ver1.2 — Click the link, then click the link again.

NOTE
I’m sorry to say there were some ghastly cut and paste errors in the version originally posted. I posted the corrected version on December 2nd, 2014. This one will flow a lot more smoothly.

Living without hope – tasks and aftereffects

I lived without hope for years. Years. It was weird to look around one day and realize I had no hope, and that I hadn’t had any for awhile. I didn’t think I was going to see another Christmas… for at least 5 Christmases.
ChristmasTree_NOT
When the few friends who were willing to be honest asked me what I hoped for or what I had ambitions for, I had to tell them that I had no hope and I had no dreams of the future.

They really had trouble with that.

Some just did that weird, head-shaking, “I didn’t just hear that” thing and changed the subject. A few asked if I was suicidal. I had been, and I drifted in and out of degrees of thinking about how to make it painless and permanent if I did kill myself, but I was… surviving.

Actually, I was working really hard on surviving. Hope had been sucking me dry, making me see things that weren’t there, putting my energy into some future I could only imagine, but couldn’t see a way to reach.

If I hadn’t been willing to drop everything, including hope, in order to just focus on the business of living with this horrific reality, I think I wouldn’t have survived. I had no extra energy, and hope was too demanding.

Line drawing of woman flat on floor, with woozles coming out of her head
Image mine. Creative Commons share-alike attribution license 🙂

When I came out of that time, very very slowly, it dawned on me that I had been fighting for so long for my own life that, for the first time in my entire conscious existence, I felt no need to apologize for the space I took up, the effort and attention I required from the world, or, in fact, for anything.

As I told my Mom at the time, “I’ve fought for others’ lives pretty often, and when you’re coding someone, they’re your whole world for the time that you’re coding them.
CPR
“If you fight for someone’s life over any length of time, you come to care about them as well as for them, even if you have nothing else in common. Well, I’ve spent years fighting for my own life, and it’s impossible to fight that long for someone without really coming to care about them. I really love myself, in a solid way, with no caveats, and nobody and nothing can shake that.”

So, I don’t associate hopelessness with futurelessness or lifelessness, as most people seem to do. I have every faith in our ability to face life without hope, because sometimes it’s just dead weight. Sometimes, it distracts us from what’s real.

I have faith in us, hope or no hope. I have absolute faith in our ability to move through the stages of this unbelievable circus we call life, and make them work for OURSELVES in the end.

Faith isn’t the same as hope, because it relies on something that’s present now, not on something that might be possible in the future. I have faith in our doughtiness, an old-fashioned word combining the meanings of nerve, grit, and determination. Boy, do CRPSers have all of that!

In the end, hope is a luxury we can’t always afford. Hoping and dreaming — putting our energy into things that don’t exist — can be a real sink. That is, maintaining hope and dreams can, themselves, take more energy than we can afford.

It sounds counterintuitive to someone who’s never been there, because most people think of hopes and dreams as what pulls us forward.

If hopes or dreams pull you forward, that’s good; if they don’t, reconsider, and maybe refocus.

Refocusing on the sheer present business of finding a way to survive with things as they are right now is not wasted time, it’s not suicidality, and it’s not even an act of despair. It’s profoundly rational, profoundly functional, and even when it’s profoundly difficult, it’s still profoundly worthwhile.

From my own experience, I have to say it’s a strange state of mind to live in, but it’s surprisingly worry-free. False worries fall away as fast as false comforts do. Once I accepted the state of life with no hope, there was no room for b.s., either in my world or in my relationships.

Life simplified itself; all I had to do was keep up — or rather, pare down. That was weird too, because I used to find stuff comforting.

In that utterly simple state, though, it wasn’t comforting. It was just stuff.

Having emotional energy invested in something so … stufflike … was absurd. Talk about false comfort!

So, before long, all I had was what I needed; nothing more, and not much less.
teapot-eaglehaslanded
In time, everything changes, even the amount of energy we can spare. I can tell you exactly when I rediscovered the luxury of hope, because I blogged about it here. It was nothing more than the first whisper, because that was all I could support, but it was unmistakeable.

Since then, I’ve also rediscovered flippancy, ambition, and even toilet humor. (My sense of irony never left, which makes me think it’s essential. H’mm…)

But a few things still remain, deep currents in the otherwise twinkly surface of my character:

  • stuff is good only if it’s useful and there’s room for it;
  • nobody, but nobody, decides when I die but me; and
  • I love myself. I may be grubby, nerdy, daffy, clever, ill-yet-unconquered — but I love myself absolutely, without vanity, and without caveats.

If it took living without hope, then I’m better for having done it.

Aphorism for the day: Don’t be afraid of what life brings you. You never know what’s on the other side. It’s just a matter of getting there.

me-fingers-peace

Preparing for winter in “Settler summer”

I’m too conscientious a historian to call it Indian summer, when the normally pleasant California shoulder season turns murderously hot.

I’m cleaning up, getting rid of clothes that were old a year ago and replacing them, and canning, dehydrating and even preserving food. I feel driven to, although it’s a lot of work and not necessarily CRPS-friendly tasks.

J cannot fathom why I’d be cooking in this heat, let alone making heavy, hearty food like bacon mash.

He’s cutting firewood instead.

Yeah, I know. We’re both kinda special.
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I have 4 blog posts almost ready to go up, but I keep making the mistake of starting my online time at social media. Within minutes, my attention is shot. I can’t finish a blog. I can barely finish a sentence.
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This is the first vaguely functional day I’ve had after a spectacularly ghastly mast-cell-mediated flare.

Silly me, I ran out of my zyrtec (which I didn’t take very seriously; it’s not important like an SNRI, right? HAH!) and spent one day incoherent and two days merely swollen, crabby and able to cope only by losing myself in mindless tasks or Terry Pratchett books.

Took a day to figure out what was wrong. Partly, that was because I didn’t realize how much the zyrtec was doing for me, and then, of course, there was the headache that made me want to hack off the offending part, which made it quite hard to reason things through.
Sketch of brain, with bits falling off and popping out, and a bandaid over the worst
J is still avoiding me, hiding in the trailer with the tv when he’s not actively butchering logs. It’s possible this chicane isn’t over yet; his behavior is usually a reasonable guide to how unbearable I am.

I only took one zyrtec today, as my stomach would not even think about more. In a couple of days I may be back up to my usual 2. It will be nice to have normal fingers; reasonably functional digestion; less inflammatory pain playing xylophone on my spine, with rimshots off the other joints; and maybe a calm and considerate personality again.

Anything is possible.
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Isy’s anti-inflammatory mashed potatoes
Obviously not for those with belladonna sensitivity.

  • 5 pounds organic red potatoes, cleaned and coarsely chopped
  • Turkey broth
  • 1 organic white onion, diced and lightly browned
  • 4 oz grassfed butter, like Kerrygold or Organic Valley Grassfed, in chunks
  • 10-12 oz grassfed aged cheddar, like Oscar Wilde 2 yr, Cabot Extra-Sharp, or Kerrygold aged cheddar, sliced or chunked
  • Optional: nitrate-free naturally-raised bacon, like Niman Ranch, cooked until very crisp, then drained and crumbled fine

Steam the potatoes in the turkey broth.

You might need to assemble the rest by halves, depending on the volume of your mixing bowl or blender.

Dump the rest of the ingredients into a mixing bowl or, if you have a really good blender, use that instead. Put the potatoes and broth on top, so the butter and cheese start melting under them and make it blend better.

Beat or blend until it’s the consistency you like.

Enjoy it nice and warm on an achy day.

Treating CRPS enough to have a life

Someone asked a question on social media that led to my doing a brain-dump on the basic format of current treatment for CRPS. This will take on a more formal form, but right now, for quick reference, here it is.

Like many others, this person has narcotics as a primary form of pain control. Increasing the dose increases function, but past a certain point, is that a good idea?

And, more importantly, the biggest question was, what does it really take to be able to have a life again?

 

Common-sense note on narcotics

Firstly, it is GREAT to have something that works. I know plenty about narcotics from a physiological and neurological and even a gastrointestinal standpoint, so I know the arguments for and against — but, when all is said and done, it’s great to have the option and it’s great to have something that works for you.

Keep what works! Unless and until you really can replace it with something better. (Clinicians, in their overbearing way, can be pretty cold about this.)

In the end, if you need to increase the dose, then increase the dose, but given how our bodies adapt and the disease shifts over time, it might be good to keep higher narcotic doses in your back pocket for breakthrough pain and flares, and see about the other meds that treat nerve pain specifically, support (in some cases) your neurology so you can function better and be more stable, and leave some slack in your body’s narcotics “budget” for other times.

Doctors should be able to support the idea that you should be able to have a life, and happy to help you figure it out. Good pain specialists have this as a specific goal which they try to help us reach as much as possible for as long as possible.

Read tamingthebeast.ca or elsewhere on this blog for loads of tips on nutrition, homeopathics, herbs, and other at-home strategies. This is just about the stuff your doc can do for you.

I mentally break these into 6 categories, 3 of oral meds and 3 of other, more interventional stuff:

MEDS

  • Neurochemical support: Mostly antidepressant-category meds, from tricyclics to SSRIs to SNRIs. SNRIs have the significant bonus of potentially stabilizing a faulty ANS.
  • Transmission shifters: Mostly anti-seizure meds, Lyrica and Neurontin. Ketamine certainly shifts nerve signal transmission, and the protocols for giving it are getting better and more specific. Technically it’s an NMDA receptor antagonist, but it affects opiate and MAO receptors too.
  • Calcium “wranglers”: Calcium channel blockers, bisphosphonates.

Basic principles of medication

  • Remember, all meds have side effects. There is no free ride; sorry!
  • Most of our meds can affect judgment, memory, and perception. Ask a relative, housemate or friend to check your brainpower and personality, to see if there are effects you’re not aware of.
  • Avoid polypharmacy, or too many meds, because it’s a great way to create a neurochemical mess. I stop at 3 different ongoing meds, since I can’t tell what’s causing problems if I take more. I also have 3 as-needed meds, which I rarely use, unless the side-effects of the pain/nausea/wheezing are worse than the side-effects of the meds.
  • Last but not least, med is spelled M.E.D. which means Minimum Effective Dose. Both adjectives are equally important. It must be effective, or why are you taking it? It must be the smallest dose that really works well, because otherwise you’re dealing with the same issues mentioned in the previous points, and they get a lot worse with overmedication.

Keep in communication with your doctors about your meds. If they’re savvy, they’ll work with you to optimize your medication profile for best functioning with fewest problems.

INTERVENTIONS

  • Injections and implants: spinal root blocks, prolotherapy, spinal cord stimulators, botox injections, spinal baclofen infusions, implanted drug dispensers.
  • Zaps and rads: TENS (electric counter-stim blocks the nerve pain), TCM (electro-magnetically stimulates and remaps certain parts of our brain that support the disease), Calmare (a more complex electrical technology that retrains the pain signal so it eventually doesn’t restart.)
  • Retraining, rebraining: Multi-Disciplinary Functional Restoration/Rehab is the gold standard for treatment. Most of these programs, but not all, require participants to be narcotic-free. The puritanism I can do without, frankly, but the whole-person approach, and the enormous mental toolkit you come away with, is absolutely life-changing.PT, OT, counseling, and learning about relevant subjects from pain mechanisms to nutritional effects on pain and function to communicating effectively with those around you so everyone can do more with less effort, is simply tremendous. It used to be a shoo-in for US citizens because it got people back to work so effectively, but in the industry overall it’s more profitable to keep us sick, so now it’s harder (but still possible) to get that paid for.You have to have determination and some mental flexibility to get admitted into a program, because it’s hard work, but if you find a program that agrees with you, then it could be the single biggest change in your life.

Every time something goes under your skin, your body has a shocky/inflammatory response. It may not be noticeable, but if it is, be ready to manage it.

If you get an invasive procedure, like implants or injections, then use one of the vitamin C protocols to help ward off flares and exacerbations: 500 mg 2 to 3 times daily, for 1 to 2 weeks before the procedure and 2 to 3 months afterwards.

Now what?

Talk over these different options with your doctor, if you haven’t already — increasing your current meds, using supplemental med support, trying technologies and interventions, risks and benefits.

Also, sadly, it’s important to discuss the realities of funding and insurance coverage, so that you can develop contingency plans to follow in case your hoped-for option doesn’t get approved right away.

Always leave yourself a way forward — that’s a good strategy 🙂

There is a lot that can be done, and most of us cobble together a few different things that work a bit so that, together, they add up to enough to let us … have a life 🙂

Learning to stand: t’ai chi, qi gong, and unscrambling the CNS

About 15 years ago, I studied shaolin kung fu with Ted Mancuso at the Academy of Martial Arts in Santa Cruz. I was outrageously lucky to wind up there. I had too much spiritual feeling to tolerate the gym-type martial arts classes normally found in the US, but not nearly enough discipline to make the most of my time at the Academy.

However, I did learn a few things, including how to block a punch in such a way that my opponent’s spinal reflexes were disabled for my return punch. That was cool.
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Being short, blonde, female, well-traveled, and — above all — a sometime Emergency nurse, all my illusions about bad things only happening to bad people were long since destroyed. It’s a great big world out there, and anything can happen to anybody.

So there I was, in my self-satisfied early 30’s, at a top-flight martial arts training school. The fact that the teacher (or “sifu”) had started in qi gong somehow totally eluded me. I was infatuated with the grandmother of martial arts, shaolin kung fu, and really had eyes for nothing else.

Smiling sparrers from Shaolinsuomi at Wikimedia.
Smiling sparrers from Shaolinsuomi at Wikimedia.

I briefly flirted with t’ai chi, but decided it would be too hard on my knees… Knees are important, but shoddily made. I had cruddy cartilage (what was left of it) under my kneecaps. I thought that was painful (how cute!) and was afraid of making it worse before my time (another joke, in retrospect.) I got physical therapy for that problem, and learned that my legs had been aligning poorly at least since I was 11.

Retraining my legs to activate different muscles, ones I could hardly feel (and no wonder), was daunting at first.

I remarked to Sifu Ted, in tones of reflective melancholy overlaying a certain smugness, “I’m re-learning how to walk.”

That was supposed to be the opening line of a short discourse on rebuilding something so fundamental, literally repatterning one of the most reflexive early lessons in life, going right back to the beginning and restructuring an utterly basic activity … yeah. Cute.
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But, before I could get started, he said, in a tone of unrehearsed frankness overlaying a certain frustration, “I’m always relearning how to walk.”

My verbal hot-air balloon deflated on a laugh, before it ever left the ground.

He said, “It’s true.”

I nodded, and went away to think that over for a decade or so.

I thought of Ted when I realized that combining energy discipline and body work was the best rubric for managing my CRPS. I’m back at his school now, studying — you guessed it — qi gong and t’ai chi.

Um… No, it’s not too hard on my knees.

T’ai chi is second to nothing I’ve tried for correcting posture, the way Ted’s Academy teaches it. While each body is unique, there are certain things that have to happen in order for the movement to work. To do good t’ai chi is to line your body up properly. My low back is slowly opening and lengthening again, and my feet are remembering how to find the ground.

Qi gong is another dimension beyond that. I’m sweating over re-learning how to stand. When I find the words, which may take awhile, I’ll write about it more. To start with, I’ll just say that I had no idea how much I get in my own way — and I’m not that bad, for a Westerner. I started qi gong 20 years ago, but now I’m starting all over again.

I thought it was trippy to go back to when I was 11, and un-learn from there. Now I’m realizing I have to go back to when I was 1.
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But I’m looking forward to knowing how to walk.

Humbling invitation

I’ve been invited to ride in the funeral cortége of the man I helped code last week. It’s a semi-public occasion, as he was a semi-public figure (which is why I’ve been cagey about details), so “yes” is not as simple as it sounds.

I seek public exposure the way other people seek whooping cough — every now and then, it hits, but fortunately, it’s rare, and generally causes no lasting damage.

I was silly enough to mention that I have a sub-par central nervous system to the extremely kindly person arranging the event — who was also my CPR partner at about this time last week. He nearly withdrew the offer on the spot, possibly raw over the possibility of another medical event.

It’s a bit strange to have someone else worrying more about my body’s reactions than I do. Kind of refreshing… but definitely strange. This disability has been so invisible for so long — a fact assisted by the sturdy stoicism so many of us live by — that I simply have no idea how to handle someone else’s concern.

To mitigate any need for worry on anyone’s part, I’m preparing for CNS stress on Monday. Here’s how…

I have found, absolutely consistently, that the key to preparing for extra events is all about berries and vegetables. All the vitamins in the world — which I think I’ve tried — can’t do quite as much good as half a bucketful of organic greens and half a basket of good berries per day. I just had a big farmer’s-market-fresh salad; I’ll have kale for dinner, and there’s steamed summer squash awaiting the next moment when I can handle a few bites. Wild blackberries are set for breakfast.

I’ll boost my multivitamins and antioxidants only slightly, since I already take about as much as my body can absorb. I’ll keep lemon balm (for pain flares and dysautonomia) and yerba santa (for nausea and nerviness) in my pockets.

I’ll do extra brain-training, which I’ll talk more about one day, but it’s basically about learning how to calm the central nervous system by sheer will. And t’ai chi. Lots of t’ai chi. Mental practice, if not much physical. I see a couple of Epsom baths in my future, stocking my system up on magnesium and sulphur to buffer this body a bit.

Funerals are for the living, though we think so hard about what the deceased would appreciate. I’m not sure why that works, but it does.

The peacocks left us a glorious side-feather.

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It might come with me. It might not come back. I’ll see what it feels like the deceased would appreciate.