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.
me_wrysmile
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.
Trapeze_artists_1890

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.

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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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Un Crossed

Note – For legal reasons, this article is explicitly labeled an opinion piece. Quotes are used with prior permission of the author.

I’ve written of bereavement, suicide, the fact that CRPS is not imaginary (the whole point of this blog), and the true mortality rate of CRPS.

Now it has all come together.

Cross Y. was a friend of mine. He wore his heart on his sleeve — there was no deception about him, no malingering, no lying, no selfishness. Selfishness was something he needed more of, and tried to aspire to, because he forgot his own needs in the face of others’. His kind and loving heart poured forth upon his CRPS kindred and those he loved, often in scintillatingly original and muscular words.

He was injured at work. You’ve seen the news about corruption in New Jersey. Add to that the corruption of the Worker’s Comp system, and try to imagine for one minute what that might be like.

July 8, 2013
The truth will set me free,
Kill your dreams,
have nightmares for the rest of your days,
Welcome to New Jersey,
we stand our ground,
unite and become one sound,

The truth will set me free,
technology,
paper trial was the beginning,
soon the end,
your dark tunnel will remain,
Yes this once holy man,
once believed,
now a fucked up memory,
many joined,
happily crucified,
only one will remain,
your future is in vain,
your lies you cannot hide,
you may run,
change your name,
DNA will remain.

The truth will set me free,
Kill your dreams,
have nightmares for the rest of your days,
Welcome to New Jersey,
we stand our ground,
unite and become one sound.

Cross Y 7/6/13 1.21pm

He was a good-looking young Middle Eastern man, so of course, the New Jersey cops figured he was dirty from the get-go.
Cross solo
Then his brother, who didn’t believe he had this disease, became a cop, and things got worse still.

I watched his family dynamics transform as his marriage with a green-card seeker fell apart, then his beloved family started to fail him, and then he spent the best part of a year fighting to survive in an increasingly hostile and impossible hail of abuse, predation, invasion, and brutality.

The system failed him. His lawyer failed him. His family failed him. The original newspaper articles, based on interviews with his family, trivialize and brutalize still further the brightest mystic-poet I’ve ever known.

I’m grieved. More than that, I’m furious.

I had to watch as his extraordinary resilience was pushed and pushed and pushed until every strand of rubber broke.

I had to watch as his stumbling command of English prose was used to throw away the meaning behind his words. Judges and doctors alike could hardly be bothered to listen, and certainly couldn’t be bothered to believe him. Those of us who knew him had to watch as his posts wove between intelligent determination and raging despair, as time after time after time he was thrown back from what properly belonged to him.

His wife stole $30,000 of disability checks. His wife dumped him as soon as her immigration status was assured. His wife pushed him down off his weak leg.

Guess who went to jail? It wasn’t his wife. Try to imagine cold, sharp steel cuffs snapping tightly on CRPS wrists. You can’t. The world isn’t supposed to be large enough to hold that much pain.

August 6, 2013
The color of my eyes have become

the mountain I cannot climb,
the west brings the rainy days,
the east brings the heat,
So I wait,
I’ll give you my night,
I’ll give you my site,
I’ll give you my last breath,

The color of my eyes have become

the mountain I cannot climb,
Realities exist,
Unwinding occurs,
Petals unfolding,
Protecting what’s remaining,
Adapting each day,
Earth is distributing,
New sign,
New rhythm for humanity,
Being Bold,
Voice your feelings,

Full moon of greatness,
Hidden lights reflecting,
Fire resurrecting,
Slumbering beliefs,
Illusions of the underground,
Transformation of natural field,

The color of my eyes have become

the mountain I cannot climb.

9.42am 8/6/13 Lost soul

His brother’s police pals broke into his room (or were let in by his parents), stole his thumb drive, plowed through his poetry and his belongings, took his personal belongings, hacked his hard drive and his accounts. When he said he was going to install a spycam for evidence, his parents got him involuntarily committed to a public psychiatric hospital in New Jersey. They did not treat his CRPS, which was, after all, all in his head. They treated delusions that didn’t exist and a paranoia that was a perfectly rational response to his ghastly situation.

He got in line for emergency housing, but the wait list was at least 6 months long — for emergency housing. A combination of Governor Christie and Hurricane Sandy saw to that. The emergency housing and homeless shelters in New Jersey have been utterly gutted.

Three weeks ago, his father attacked and strangled him at a barbecue, in front of others. He posted a picture of himself afterward, with a bleeding bruise under one eye and big red welts around his neck, with the distinctive engorged look around the eye-bones (remember this is a former Emergency nurse writing this.)

His mother stood by and watched.

Someone called the police.

The partygoers disappeared.

His mother told the police that her husband had not attacked Cross, but that Cross had attacked her — with a knife.

Guess who got the handcuffs…

In private, she later apologized, and said she’d write a statement retracting the police report and her statements behind the psychiatric report.

She reneged.

He was living with people who were actively trying to destroy him. His work was being invaded and stolen. His life was in danger. Not even his dog’s life was safe.
Cross and his dog Leo
He had a sign posted in the rear window of his car: “We burn until there is a cure for RSD/CRPS.”

With perfect logic, he burned his car, before jumping to his death in the most beautiful part of the state. Of such indelibly poetic actions are myths made.

For him, there was no cure.

July 7, 2013
They Murdered me, I never

committed Suicide….

This disease is not imaginary. He was not crazy. He was perilously sane. He was a warm and loving soul with a shining gift of a mind, trapped in a fatally tightening spiral.

All he is now is a tragically truncated memory. What’s left is what we can scrape together of his work from our online conversations.

They keep saying he died of suicide. That’s not true. He died of torture: CRPS, institutional murder, and child abuse.

I. Am. Furious.

Cross, however, is finally at peace.

Reaching the Universe

Silence the past,
Silence the worries,
Silence the outside,
Silence the future,
Silence the self,
Silence the noise,
Silence the people,
Silence the voices,
Everything has left,
Faith in the now moment,
Faith that I am present to myself,
You are stripped,
You are Free,
You are Pure.
You are reaching the universe.

– Cross Y

Rest in peace, my darling, shining brother.

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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.
Faience_beer_stein_with_ball_scene_on_brown_background_web
But I’m looking forward to knowing how to walk.

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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.

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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Move slowly, stay happy… except when pushing one and a half to two inches straight down on the lower half of the sternum

We went to a great farmer’s market, where J got me a ceviche tostada that had to be tasted to be believed. I got a flat of outstanding organic peaches to dry for the winter. All this is much easier said than done, because today, for some reason, is pretty harsh as pain days go.

J wanted to know, in his brusque-backwards way, what I intend to do about it.

I replied that I’d probably trim his hair, then lie down for a bit, then watch a silly show, then come help with the wood — which means, bringing cold drinks and looking on admiringly.

I said, “Managing pain days is basically a matter of, move slowly and stay happy — to the extent that that’s possible.”

He liked that. He added jovially, “Used to be more like, move quick so I can get away from people — then I could stay happy,” he said, veteran of a socially hideous region.

We both laughed.

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Moments later, we saw people beside the road, one lying down. I saw CPR.

CPR

I barked, “Pull over NOW!” J knows my voice, and he’d never heard that tone before. He did. Instantly.

A first responder was doing chest compressions, and getting tired. CPR is incredibly hard work; if Mr. Universe did CPR, he’d tire even quicker.

I got down and planted my less-injured hand on the responder’s stacked palms and between us, we made a strong enough compression to create a pulse in the patient’s leg. This is what you want to do: create an artificial pulse, to sustain the vital organs until the heart itself can be restarted.

The runner had felt chest pains 5 minutes before, according to his workout partner. Then he went over. Just like that.

I won’t go into messy details, but by the time the helicopter was landing and I’d brushed myself off to come home again, I was aware of how strange it was to do this outside the ER, to snap into lifesaving mode from a standing start, and to find myself — without the mental shield of my work-badge and trusty stethoscope — turning away from a still-blue figure and not knowing if he’d make it.

J said of the man behind us, in his elliptical way, “He didn’t look like a jerk.”

I said quietly, “No. He had a really nice face.”

I’m sure he had good medical care. He worked out to keep fit, and had the muscle tone to show for it. He had a bit of chest pain 5 minutes before, then keeled over.

It’s not fair.

I took my clothes off carefully, keeping the dirt off me and turning them inside-out before dropping them in the laundry. I washed my hands and arms to above the elbows. I used to do that on coming home from work, every time. But I’m not able to work, and those weren’t scrubs.

I have some additional prayers to make now, and a body of my own to manage.

I have to move slowly, and stay happy, to the extent that that’s possible. There’s nothing else that could possibly help, because I’m no longer in the ER. I’m a 13-year veteran of the worst pain disease known to medicine, and I helped do CPR today.

I wrote this in the hope of coming to some conclusion that would make it easier to move on from this shell-shocked state of mental mumbling. I haven’t, yet… but let me add one thing.

This man had every chance, once he went down. CPR was started within a minute. The ambulance arrived within 5. He should be getting definitive care within 15 or 20 minutes of hitting the dirt. This is how it’s supposed to go.

In honor of this man who was given every chance, and in honor of my father who never had any, please learn CPR.

Even if your bones are too frail, as mine are, you can still provide the extra push that’s needed.

Even if you can’t risk infection from someone else’s fluids, you can still check for a pulse while others do the dirty work.

Even if all you can do is puff your chair a little closer, you can still direct the able-bodied, because it really helps to have a cool head looking over the whole scene.

Please learn CPR. You’d be amazed at what you can do with it. Those of us with disabilities get too much of the message that boils down to “can’t”, but when it comes to working to save a life, if you know the protocol and what to look for well enough, then there’s usually a “can” that you can go for.

I gave the police my name and number, and I hope to find out if our guy made it. (NB: Details were changed to protect his privacy… but I’m sure prayers and meditations and good thoughts will get through just the same.) I’ll post a comment to let you know.

In the meantime, here are a few links.

My ANS is going to be vibrating for awhile. I’ll start with lemon balm and see what else I can remember to do.

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T’ai chi and emotional pain

When I’m out in the world, my reflex is to shove grief into a bundle and push it aside, and try to act as if I don’t feel it.

It’s always surprising how much energy that actually takes. When I’m doing anything else that takes much effort, it’s nearly impossible. It makes me forgetful and clumsy, just like a pain flare.

When I was at t’ai chi class yesterday, shoving and pushing one way with my mind while I was shoving and pushing another way with my body was so exhausting that I was wringing wet with sweat. Then I remembered something I’d tried briefly before, and decided to try it for the rest of the class.

I mentally drew the grief into my whole body. The grief turned to sadness and stretched out into every muscle fiber, every moving part. And I did t’ai chi with a body that was swarming with sadness.

It was, above all, peaceful.

I certainly wasn’t as tired. The sweat vanished as if by magic. I don’t even remember it drying on me.

The important thing is, I wasn’t expressing sadness in any deliberate way. I didn’t move more slowly, or try for any effect. I moved more deliberately and with better focus, because I was integrated. My body was filled with sadness, and I moved that body through the t’ai chi form.

The point of t’ai chi is to clear things up, straighten out what needs straightening, and separate muddled body parts and muddled energies into their proper alignments. Therefore, the sadness got a heck of a massage, and by the end of class, it was like it had been processed into something more wholesome. There wasn’t nearly as much sadness, as such. There was a lot more peace. There was a sense of strength I can’t put a name to.

I must add, as a footnote, that it’s been a long time since my feelings were capable of unshadowed joy. I have learned to cultivate a certain shallowness of mind at times, so I can be insulated from the deeps and be simply happy in the moment.

Therefore, when I say that I was happy as I left class, understand that it was a deep happiness. The shadows were very much a part of it, but that was fine. They were in the right place.

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My guts are gallivanting

The past few weeks have been… interesting.

me_wrysmile
Oh, dear.

I seem to have gastroparesis, because after every bite or two of food, I felt like I’d swallowed a cannonball, I’d still taste it up to five hours later, and even the thought of food made me nauseous.

At the same time, I seem to have wasting syndrome, because the other end of my GI system was working double-time and overtime. I was exploding on the toilet long after there was anything to explode with, whether I had eaten or not.

Toilet stall with graffiti covered with brown, yes, brown paint
It’s not what it looks like…

The weight loss has been a boon to my knees and hips, but the ground-in weakness is annoying.

The usual treatment is a “low-residue” diet, a shameful pile of poor nutrition and monotonous eating, consisting largely of things that I’m allergic or sensitive to — and steamed vegetables, which I can usually eat by the plateful, but can now barely manage a bite of, they’re so heavy with water.

I thought it over.

The Thinker, Auguste Rodin
Rodin’s “The Thinker”, looking very apt.

Both gastroparesis and diarrhea indicate an intestinal lining that is starving for antioxidants, and probably inflamed. Therefore, anything I eat is going to have to have antioxidants, because that is first-line treatment for tissues starved for antioxidants. Many antioxidant-rich foods are anti-inflammatory, so it’s useful for me to lean towards those.

The sluggish-to-trudging pace of intestinal motion, or peristalsis, is liable to under-stimulate the release of digestive juices, so anything I eat had better be easy to digest — or, better still, partly digested already.

Since I could only eat one or two bites at a time (and still feel rather ghastly afterwards), every single bite — in terms of both nutrition and flavor — had darn well better be worth the trouble of eating it!

Woman with eyes closed about to bite a cherry
Fabulous cherry by Jiri Ruzek.

I’ve been interested in good food since forever. My mother has been an outstanding cook all my life, and time spent helping in the kitchen was never wasted. She’s always been good at shoehorning a bit of extra nutrition into something in a way that improves the flavor. Dad would eat anything, so failed experiments were never wasted.

Because of my upbringing (traveling widely with a good cook on one side and a walking disposer on the other) I’m a fearless cook and a promiscuous eater, happy to try anything from anywhere, as long as it’s good in both senses of the word.

Earth with Place Setting. Photo of formal place setting from Hopefulromntic, images of Earth and Moon from NASA
Photo of formal place setting from Hopefulromntic, images of Earth and Moon from NASA.

On my sudden return from abroad in 2006, terribly weak, badly sick with CRPS, and having my heart broken in umpteen pieces by the most traumatic, trouble-ridden, devastating trip of my entire life, I found sanctuary with my friend L and her family. It took ten days even to notice which end was up, but then L said, as I snacked on something homemade from a jar, “It’s normal to eat a lot of raw food when your system has been deprived for so long. Give it another week and your appetite will get more normal.”

I considered being embarrassed, but I was too busy absorbing the impact of what she had said. I had heard her talking about “raw food” since I’d arrived, and I understood it meant cold-processed food that was carefully jacked to boost its nutritional value and digestibility.

I didn’t realize I was devouring it on an industrial scale.

backhoe, by Antti Leppänen
Veggie-loving backhoe by Antti Leppänen.

Knowing what I know now about the devastation at the cellular level that this disease can wreak — and the depth of disruption that even occasional trauma can cause, let alone a relentless, months-long parade of traumas — I’m not surprised. At the time, I found my attention sinking deeper and deeper into my body, and noticing a curiously profound ravenousness that only L’s un-cooking seemed to satisfy.

It actually took four and a half weeks… of grated beets lightly marinated in balsamic vinegar; young spinach dressed with fresh lemon juice and flax oil; pepitas dried with tamari and spices; crispy sesame-kale flakes; yogurt made from sprouted cashews; homemade nut milk; juice from apples picked an hour before they met their fate; tomato-leather from the garden’s surplus, stowed in the deep-freezer to make tomato paste and soup base in the winter. It was a feast of discoveries, or a discovery of feasts.

feast of beautiful food, most of it raw
Beautiful feast photo by Incase.

At that point, L asked if I’d mind kicking into the grocery budget. (I turned bright red, smacked my foggy forehead, and started taking my turn at the grocery store.) I did my feeble best, but I’ll never be able to pay back the real value of what they gave me, in terms of sustenance for the body, balance for the mind, and stability for the soul. L let me know when she had had enough of gratitude, so at this point, I just do my best to pass it on.

I recently replaced my blender, as the old one was blowing smoke, and I got a dehydrator too. In light of my nutritional status, I put them to use.

Here’s an example of the sippy-cup-sized shakes that I make in the blender…

Blender cup with ingredients for small, mostly raw, shake next to it.
My mini-shake makings, with an aperitif of bitters to get my gut to gear up.

… and the partially re-created flax-cracker recipe we’d invented all those years ago — the ones that smell like hot-dogs and taste like junk-food, and have more minerals and omega-3s than you could shake a Triscuit at. Mine aren’t quite hot-doggy yet (I used a lot of sesame), but they are, wow, really good just the same. Especially with a touch of grassfed butter, when they’re out of this world.

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Homemade flax-sesame cracker, with grassfed butter. Mmmmmm.

It has been almost 3 weeks, and I can finally eat a small meal once a day without significant repercussions. Also, I can be more than an hour from a toilet without fearing for my trousers.

I’m so far successfully denying the fact that the endocrine shenanigans of this disease have made it so that I can’t drop this excess weight unless I’m literally starving. I don’t think I’ve gotten above 1,000 calories per day more than 3 times since this started.

I’ll think about that later. Right now I have a sliver of raw goat-milk cheddar and a sprouted sesame-flax cracker waiting for me.

baby goats under their dam. One goat looking at us, one nursing.
Cute kids from Fir0002.
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Define “invasive”

I was a Registered Nurse for 8 years — in one of the first HIV specialist units in the country, in the only public ER of one of the murder capitals of the US, in cardiac telemetry, in home care. It was a good, demanding, well-rounded career, if a bit short for my taste.

I’ve often wanted to re-educate my nursing self in light of my experience as a patient.
me-tongue-out
Here’s one of the most outstanding, outrageous lies we tell ourselves as clinicians: medications are not invasive.

That statement bears no resemblance to the reality of those being treated. It relates entirely and exclusively to the clinician’s experience. The clinician’s unstated assumption is, “I’m not hanging onto the thing that’s getting under your skin; therefore, what I’m doing is not invasive.”

News flash: Treatment is not about the clinician. It’s about the person being treated.
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Medications get taken into the whole body, not just the ill part. Injections go right past the first barrier against infection and assault, the skin. Oral medications go through the mouth, descend into the stomach, and there meet the second barrier to infection and assault, the GI system… which they either aren’t bothered by, or can resist.

They’re then taken up by the blood, which goes everywhere.
circulation-allbody-Anna_Fischer-Dückelmann_1856–1917
They are all processed in the liver (it’s called “phosphorylation” and, privately, I suspect that’s why we tend to have trouble with phosphorus issues when we’re on lots of meds.) This is why too many meds for too long can lead, or contribute, to liver failure.

What goes through the liver goes through the spleen and kidneys, because that’s how it works. This is why some drugs can cause kidney damage.

What hangs out in the blood can, all too often, hang out in the brain. This is why some medications for organ issues or even a simple infection can cause deafness.

Blood circulation exchanges fluids with lymphatic circulation. Blood and lymph communicate with the central nervous system via the blood/brain barrier and the sheath around the spinal cord. The blood/brain barrier provides partial, rather temperamental protection, but it can be suborned by anything that makes the tissues fragile — fever, illness, injury… and some kinds of medication.

What is in the blood goes everywhere.
circulation-allbody-Anna_Fischer-Dückelmann_1856–1917
How is that not invasive?

I’m watching my partner fading with weakness after only a week on a couple of cardiac meds. I’m certain his heart has not gotten worse in a measly 7 days. The only thing that has changed is that he is seeing doctors and taking medication — for nearly the first time in his life. (“No side effects,” my left foot.)

How much of that weariness is stress, how much of it is the past couple of years catching up with him, how much of it is heart disease (actually, that part is pretty clear) and how much of it is medications? Each of these things has some part in it, there’s no question, but drawing the line between them is more than I can really do. I know the meds are part of it, but how much?

Medications are intimately, unavoidably invasive. There is no completely safe dose, and there is nothing that helps you for free.

Everything — meds, interventions, surgeries — EVERYTHING has side effects. There is no single thing you can do to your body, or allow others to do, that doesn’t affect every part of you in some way.

My years as a CRPSer, where the consequences of every change are so exaggerated, makes this pitilessly clear to me.

Given that there is no free ride, we have to look at the tradeoffs. Knowing that there are issues with absolutely everything, however “natural” or “close to our bodies’ own chemicals” it may be, we have to balance that against whatever benefits it may have.

Herbs are included, by the way. My increased sun sensitivity (which my disease causes a bit of anyway) and impairment of birth control (which I don’t take — what, mess with these chaotic hormones?) are side effects I shoulder with my eyes open, so that I can have the neurotransmitter support of the St. John’s wort herb I take twice a day.
St._Johns-wort_(Hypericum_tetrapetalum)_(6316227601)
I review all my medications twice a year at least, to see how I can tread the narrow path between optimum benefit and minimal confusion. Doing this from a chronically slightly confused state is, naturally, a whole different kind of fun. Working out which part of the daffiness is disease and which part is meds and supplements is really my most important task.

My partner has to choose between cautiously building back up some heart strength and circulation — and meanwhile have a life that is a small fraction of what he used to have for energy and activity, unless and until the medications and rehab really work; or risking the total loss of death by having a surgery which would leave him in pain and in rehab for awhile — but, afterwards, bring him back a lot closer to his normal, with many good years ahead.

Wait and see and work and hope, or take a leap and — if you live — work and probably win?

In a way, I envy him. If there were a procedure to do a bypass graft to eliminate CRPS, I’d be in the OR already. I’ve had enough of a twilit life, of exhaustion and fog. I want to get back into the full sun.

I miss running, too.

But it’s his heart, not mine. I do my best to explain things, listen carefully so as not to run over his real thoughts, and grab hold of my anxiety with both hands, so that any decision made is truly his. As it has to be.

Until then, he has to peer through the fog and work through the weariness of these “non-invasive” medications, to make his choices and his appointments. I’m just there to help — and to make sure he’s taken seriously, which is a real drawback to looking as fit as he does.
J-playing-on-treadmill
But that issue is another post…

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Just like Hemingway (no, really)

I read, years ago, something from Ernest Hemingway about his process. (I can’t wait to see which of my literary friends will be able to tell me where he wrote this.)

He took off, for months or years at a time, to live. In his terms, that meant running with the bulls, or falling down mountains, or shaking his sweat off into the sea. He had what most of us would call adventures, big hairy spans of eventfulness, in which he’d get immersed past the reach of words, and soak up sheer experience.
boat-bittenbycrocodile
He said, mindfully, that it took weeks or months to regain his command of his wordcraft, but if he didn’t take the time out from writing in order to take time to live, there would be nothing to write about.

Needless to say, I’m envious that he had the choice. Lucky swine.

It’s safe to say that I’ve been living — if not in Hemingway’s terms, then certainly in my own — occasionally even past the reach of words, or at least past the desire to use them.
me-fingers-2up
Some experiences are beyond words, but not beyond gestures.

Some things are a lot more entertaining in retrospect, and if it takes a few weeks or a few months to be able to write about them in the way I want to, well, the time will pass anyway.

Meanwhile, we are working simultaneously on getting me back my brain and getting darling J back his heart. Both are turning out to be a bit trickier than we’d thought.
sketc h of excessively happy doctor running with a hypodermic needle

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