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.

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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 🙂

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Humbling invitation

I’ve been invited to ride in the funeral cortĂ©ge 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.

peacock_sidefeather

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

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It’s a different world in here

TRIGGER WARNING: Body image. With a twist.

I feel like I’ve been inflated. If I get any larger, I may collapse in on myself and form a neutron star — possibly even a black hole.

"Portrait of the Quasar as a Young Black Hole" from NASA's Hubble telescope
Charming, eh? And round.

My pain psychologist isn’t worried. She thinks there’s nothing wrong with “a little comfort weight”, especially as I’ve been making such progress in her area.  Of course, she has a slender elfin figure herself.

This isn’t the usual rant about weight and health, or the girly American whining about fat. This is about living from the inside out, and what happens when my physical vehicle takes up a whole lane.

Nursing has a diagnosis called, “Body Image Disturbance.” Take a look at that phrase for a minute. It’s very telling.

Body
Our physical interface with the world; the medium we use to communicate with others; the first sensory impression we get of our surroundings; the complex organism that gets us from one place to another; the thing that gives others their first sense of who or what we are.

Image
Our mental framework, or paradigm; the belief or understanding we have about our presence or effect in the world; the way others tend to think of us; the way we think they think of us.

Disturbance
Something awry — probably disturbingly so. Not good.

Do we need to address the usual social issues? Yes, skinny people get treated better, all across the board; fat people are far more likely to get abused and overlooked, and not just for sex — for everything. Lots of people have made lots of money writing lots of books about that, so read them if you’re confused.

Let’s move on.

I’m in a different sensory and physical world from what I’m used to, and it’s a really strange one. The experience of physical life from this different shape is, yes, disturbing.

My feet are pressing so hard against the ground that my shoes fit differently.  When I carry something, it pushes my weight over the tolerable limit and threatens to bring the CRPS in my feet back to life — and I had just about gotten rid of the pain symptoms there. The circulatory symptoms are another matter — zombie-foot is a regular event.

My cat floats above me by quite a few inches, when he should be lying more or less on my abdominal muscles plus a blanket of padding.  It’s weird to have to reach so far up from my spine to pet him — my shoulder rotates much further in my cuff than I’d expect. I’m getting better at feeling my joints, and this is not exactly a positive feedback loop.

My upper arms keep catching against my sides. This is rather disorienting, since I’m improving my sense of my body in space and usually, when my arm catches on something, it means I need to increase the space between me and foreign object. There’s no foreign object. It’s just more of me. Weird.

I had a sway in my lower  back which I managed to straighten out awhile ago. Better spinal posture means less pain overall. So now I have a substantial, unstable weight hanging in front of my spine, which means I have to work my abdominal muscles really hard to pull it closer to my center of gravity so I can just stay in balance.

My abs are killing me. If I don’t use them, my lower back hurts me worse, so those abs are constantly on duty.

I give them a break and relax them when I sit down — and it’s like being on top of a balloon that inflates, as my stomach takes over the lower horizon.

balloons-innflating

I poke it curiously, wondering how far down I have to go to find the original outline. I give up at the second knuckle. Too discouraging.

When I sit in my car, my right hip brushes against the driver’s armrest.  First thought: I’m over too far to the right; my hip shouldn’t be near that. Wrong. I’m dead center. It’s my hip that has travelled far.

But there is an up-side. When I fold my hands together, I have a perfect armrest. Soooo comfortable. It’s like it was made for me!

And the stares I used to get — or rather, that my endocrine-disrupted DDD cups used to get? Gone. No wolf-whistles or dribble on the sidewalk from creepy slimebuckets who seem to think I should be delighted at their lack of self-command. Nobody’s goosed me or grabbed a feel in ages!

It’s very peaceful. Makes it a lot easier to feel at home in my own skin, not to be bracing for the next random invasion of privacy.

I’m no longer constantly holding a sharp elbow at the ready, to fend off some suddenly-clumsy dude who goggles briefly, with a word-balloon appearing above his head that says “are those real?”, then says “oops” and bumps into my pneumatic (and sensitive) form as if by mistake. I got so freakin’ tired of that!

Perhaps a leather vest with spikes all around…

myvest_front_med

This, incidentally, is why so many women feel  comforted wearing a burka. It makes the wearer more sexually invisible and insulates her from much of this random predatory crap.

My fleshly burka. Take that, right-wing-nuts — of any religion. You don’t even WANT to control this.

And, in a huge relief to my CRPS-riddled body, nobody wants to slam into it now, either. Yesssss!

I’ve got to get that vest. I can’t, and don’t want to, keep the fleshly burka, but I have to find a way to manage the body-slams. Never again.

As for food… Here’s what I’ve learned for the current incarnation of CRPS endocrine/digestive ballyhoo:

– No grains of any kind. No lentils or beans.
– No dairy, except small amounts of hard cheese — the protein sufficiently altered that I can handle it in small doses.
– No sugar at all, but more unrefined stevia.
– I’ll have to get kefir “grains” and make my own water-kefir. I have some ideas for that.

I still have most of the world of nontoxic produce, nuts, and meat from healthy animals to sit down to. There are worse things… It isn’t cheap, but I’m learning where to shop. And it sure tastes good.

P.S. You want what?? Measurements, weight, photographs? They miss the point. I’m not looking at me, I’m looking from me.

I’m not comparing myself to anyone or anything. This is simply the view from inside. Hope it’s worth a laugh or two 🙂

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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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Back in the saddle again

The grip of the last round of the Yucks started to break right after posting my last. I hate it when I have to go that far to get past a bad spot, but hey, I’ll do whatever it takes to keep heading in the right direction.

Dignity is optional. Progress is not. Words I live by.

My new kitten has changed apparent gender twice, and is back to being a boy kitty — not that it matters in any practical way. I was looking for a name as elegant, good-natured and playful as he/she/it, while treating an upper respiratory infection that made that left eye look like a mouse:

My cat’s mouse

But then, with returning health and strength, his natural energy and violence reasserted itself. He has exactly two gears:
1. Unconscious (or nearly so)
2. Full-tilt, greedy, grasping, and spikily impulsive (as the scratch-marks around my blinked eyelashes attest)

So I’ve named him Siddhartha, in the hope that something will rub off.

Siddhi playing hide-n-seek.
(“Siddi” is an Arabic address used towards a respectable gentleman.
Another fine malapropism from the chronically punny.)

All of his front nails are trimmed now…

In health care, we call this “desensitization”

As for my own care, I’m up to 2/3 of my reiki time and 2/3 of my basic qi gong routine, and hope to get some t’ai chi in today as well. This is tremendous progress.

Vegetables are once again a chief component of my diet, thanks in no small part to an enormous bag of frozen “Normandy style” blend from Costco and our local dollar store, which sells cheap organic produce out of cardboard boxes.

I actually did laundry yesterday.  Today, I hope to take a shower and — gasp — wash my hair!

 

I realize only a minority of you will find that truly inspiring, but the rest can have a good laugh… and then think for a minute 🙂

For me, life with CRPS is indeed a matter of tiny triumphs and great goals. For the record, I’m still bound and determined to advance the search for a cure, and yes, I’ve gotten slightly more concrete in my ideas about that… More to come in time.

And now, just for the deliciously hokey yodeling at the end…

Links list:
Here is a recap and explication of the links used in this post:

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Frustration at the wall

I’ve had my nose shoved up against a wall for two and a half weeks now. It’s very frustrating but it’s the nature of this disease that, at times, I’m going to get stopped in my tracks, and I may not always understand why.

I have had less energy than I do now, but I have never had less motivation. Me? Unable to start something? This is so out of character that it’s a bit like seeing Mother Teresa bite a kitten — unfathomable.


Speaking of eating, I’ve been craving sugar so intensely I have truly felt like I’d lose my mind if I didn’t eat sweets. I haven’t had serious sugar cravings for almost a decade. That was one problem I never ever thought I’d be dealing with again. That’s finally lightening up, thank goodness — and thanks to some mental judo and nutritional first-aid. I can’t take on any more weight or the pain in my feet will become unbearable, and my hips are already giving me hell.

I have great blog ideas, but getting them into words isn’t happening. No… words… come… together. This is so strange I don’t even need to elaborate. This is the first thing I’ve been able to write in weeks and it’s not a blog, it’s a tirade. Excuse me while I scream.

My muscles across my shoulders and upper back are so tightly knotted I can’t do my exercises or qi gong or even more than a stroke or two of tai chi without that weird warping sensation when the muscles pull my moves awry — and then the nerves pull back and howl. Some activity would be better than none, but low as that bar is, I just can’t make it over.

I got a break from my muscles last night when I loaded up on Flexeril (if you follow this blog, you know it’s almost unheard-of for me to hit the CNS-affecting meds) but the lethargy, brain fog and stupidity this caused, for 18 hours afterwards, is hideously limiting in itself.

After trying to do my most basic stretches just now, I took another dose. I will NOT let this twisty locked-up posture become the new normal.

And somehow, nevertheless, I will function tomorrow enough to get my pills and get my gear and get my food for the day and get my sorry ass over to OT and PT and hope something can break through this maddeningly comprehensive barricade.

Needless to say, this is not my usual pleasant, mindful, lemons-into-lemonade sort of post.

This is me grabbing the damn lemons and throwing them right back, hoping to hear a few screams as they connect. 

In the fullness of time, I expect I’ll be able to  find a trigger, or a clue, as to what exactly started this and how to avoid it in future.  I can’t see it from here, and maybe this is the start of what I dread most: The Slide, the final descent into irresistible helplessness and incompetence.

But I think not. I’m too damn angry to give it that much room.

Let’s see what happens next. My money’s on the chunky blonde with the harsh mouth and crappy attitude. 

… And the new kitten…

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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.

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Dietary limitations? Where? I’m too busy feasting, thank you

Dietary limitations are a recurring theme in my life — and that of many who read this.  There’s little self-pity left in me for it, because my world of food has opened up in magnificent new ways. I hardly miss wheat, for instance, because I have so many other wonderful things to wrap my teeth around.

This attitude is essential to a bearable life.  Admittedly, it’s an adjustment to learn not to think in terms of “not“… Wait, let me rephrase that…

Since it’s hard to get started with food changes, and my energy and attention are limited, it helps to have people show me alternatives.The past decade or so has been filled with people who do things — like eating — differently from how I did, and that has been a huge help. I’ve mentioned the Brain Food shakes (once or twice) but the blender is only one of the arrows I have in my dietary quiver.

I’ve also had the advantage of living in “foodie” areas where it’s not that hard to find alternative sources of nutrition:

– heritage and heirloom strains of vegetables abound (a good way to reduce exposure to problematic proteins is to eat unmodified strains),

– gluten-free mixes of several different brands let me figure out what works for me (I do best with sorghum/tapioca based blends), and

– it’s easy to find foreign foods like quinoa (a quick-cooking grain which is extremely high in protein and tastes fantastic with a little butter) and English cucumbers (which are more digestible than the US kind).

It also helps to experiment with different forms of cookery. For instance, I loved discovering sprouting, because it creates lots of food from very little outlay, it’s mechanically easy, and it takes only a few seconds of effort at a time — perfect for CRPS-induced ADD!

There’s a lot of, well, let’s call it culture, around sprouting. Don’t be fooled by the complex gear and the long lists of instructions. Those complications are for those who find it satisfying to work out the details.

That’s fine. It’s also optional.

Sprouting

It’s really very simple. There are only 3 things you need to have and 3 things you need to do.

Have

1. Clean jar,
2. organic (or close) sproutees,
3. safe water.

That’s all you need. A mesh top for the jar is handy, but you can make one with cotton gauze and a canning band, or by drilling the original lid. Toss the used gauze in the washer and reuse, or just toss it and cut off more.

Do

1. Water them.
  a. Soak sproutees overnight, covered +2″ with water, in the fridge. Pour out water in the morning.
  b. Then rinse 2-3 times a day, more if it starts smelling anything other than fresh and bright. Just stagger to sink, pour water in over gauze/mesh, give it a gentle slosh around, and pour it out. Repeat.
  c. Park aslant, head down, in a clean drainer or in a lip of the sink. Drains excess moisture.
No fussing.

2. Grow them until the tails are at least 1/4″ or 60mm long, for best nutrition; up to 2″, if you like greenery. Takes 1-3 days to get to 1/4″.

3. Eat them fresh; keep a couple jars going so you always have something coming up. It’s very encouraging. As soon as I empty a jar, I set it back up.

Whatever I sprout, I buy it fresh enough to have its proper color and scent, and that yields 80% or more of sprouted germs. Less yield with older product.

I’ve discovered that tiny red lentils sprout quickly and have a subtle sweetness that’s wonderfully satisfying and goes with soup, salad, on sandwiches, in rollups, and (usually) straight out of the jar.

Sprout amaranth to just over 1/4″, add half and half or cream, sweeten with a touch of brown sugar … it’s halfway between Cream of Wheat and Malt-O-Meal. I was stunned. Had to try it a couple more times just to be sure.

If you’re inspired, please let me know if you discover any real gems, like amaranth cream of wheat 🙂

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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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