I used to be punctual, meaning, 3-10 minutes early. I used to be relentlessly diligent. I used to be cast-iron reliable. (I worked hard to acquire those skills, after drifting through my first couple of decades with my energy and attention set to “simmer.”)
These were so much a part of my identity that, after a memorable lunch with 12 engineers and one writer (me), they passed me the bill to calculate. I didn’t know whether to laugh or cry, but I scolded them and passed it back. CRPS had already set in and numbers tended to cartwheel in front of my eyes, but I didn’t tell them that.
My care providers know they have to call me to confirm the day before an appointment, because even with the calendar in my phone and on the wall, and now with a weekly dry-erase scheduler on the fridge, I need the added sensory input to make sure the other 3 are correct and, above all, to give my brain one more hook to the info.
Reliable, remember? I’ve still got a lot of identity tied up in being reliable, and it takes a LOT more work, but it’s important enough to me to do, and ask for a little practical assistance with.
Today, I looked at the clock when I woke up and thought, “Hour and a half to appointment time. OK.”
As I set up my tea, I thought, “I’ll let J sleep. He’d only have half an hour to get ready and I don’t want to spoil his morning.”
As I washed and dressed, I thought, “Excellent, time to read a little while I have my tea, fruit and morning pillage.” Can’t just call them pills. Definitely pillage. I hope to lay waste to CRPS as it tries to lay waste to me, so that could go either way.
En route to my appointment, I found a whopping case of vehicular atherosclerosis — a traffic jam, in a country stretch of highway. Very odd. The clock read 9:50, and I realized I was going to be late gor my appointment.
Diligently, I picked up my phone and made an illegal call to notify Dr. Resneck that I’d be late.
She said, in slightly worried tones, “But… your appointment isn’t until 11.”
Not missing a beat, I said, “Excellent! I’ll pull over and read for an hour. That’ll be nice!”
In response to the still-shocky silence, I added, “Well, an hour early is better than an hour late, isn’t it! See you soon!” And hung up.
I realized that my brain had simply done an ER-worthy triage — is anyone hurt? Anything made worse? No? Fine! — and moved straight on to a good Plan B. I’m reading Jodi Taylor, and St Mary’s is about to be incinerated and I’m dying to know what happens. And yes, I’ve read it before, though not for awhile.
If I were a clinician caring for me, I’d note this incident down and give a worried little sigh. It’s not good, just not very good.
But I have learned, in this brutal school of my life with this ratfink stinker of a disease, that I CAN’T WORRY ABOUT THESE THINGS. From the standpoint of the person doing this, I am really pleased with my handling of it.
Anyone hurt? Anything worse because of my mistake? No? Fine! Now let’s advance some other agenda I’ve got! Because as long as the first two questions come up negative, IT’S OKAY. I am not a failure, oddly enough. I’m just not. I get a free hour, and that’s pure bonus!
Off to read my book. Enjoy the rest of your day, and remember that blessings can come in heavy disguise.
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.
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?
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.
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/
I was mulling a post called, “The Pulse,” about how my life tends to go in surges, and when I work with that, things go better, but when I try too hard to flatten life out to a steady level, everything goes badly. Some people try to flatten the ocean. That’s above my paygrade. I just try to ride the waves. Photo Brocken Inaglory/Wikipedia.
It’s about the pulse — push when I have the momentum to push, pause when the momentum fades, sink when even standing still feels like a sucking drain; push, pause, sink, push, pause, sink, and so forth.
If you’ve ever held a stethoscope to the sound of a beating heart, you have an idea what that sounds like.
It’s like pacing, a familiar concept to the chronically ill, but on a larger timescale.
Winter always involves some withdrawal, some sinking. This makes lots of sense to my acupuncturists and martial arts teachers. The traditional Chinese medical model assumes that we’re embedded in a larger reality, with weather and climate and timely changes, a key idea which conventional medicine doesn’t acknowledge very well.
I used to be able to push enough, even in winter, that the annual sinking wasn’t that obvious, given that most of those around me were in winter too. However, since my mid-30’s, a lot of people I’ve loved, liked, and depended on have died in the chilly armpit of the year. Deathiversaries, as I’ve noted, tend to have an effect on me, especially when they pile up like… well… bodies.
Perhaps I should move south of the equator. Then it’ll be warm at this time of year, at least for me, if not for my lovely ghosts. Photo in the public domain, with thanks to the photographer Nello Rolleri
Late last year, two honorary brothers, one of my dear CRPS friends and a young friend whose life I actually saved at one time, both died. Now, at least two of my honorary sisters are at the end of their lives, one of CRPS and the other who’s working on her 6th cancer.
I’m not whining. It’s not about me, it’s definitely about them. I’m not dying.
It’s just that it’s hard to remember that, sometimes.
Helpless as I am to hold back the grim reaper’s scythe, there are sometimes things I can do to soften the end of others’ lives. My first nursing job was on an HIV/AIDS unit in 1991, so this is a well-established idea for me.
This year, though, 24 years on, some invisible line has been crossed, or some invisible straw has landed on this camel’s back. I cannot move. (It’s kind of wild that I can write, finally.)
I am paralyzed, generally anesthetized, frozen. There is no pulse, no pause, no sinking, not a microgram of push. My mind currently looks something like this. Photo Chris Stubbs/Wikimedia.
Four days of work, pushing so hard it sucks my breath away, and I now have a psychotherapy appointment with a 30-year veteran of helping the chronically ill and deeply traumatized. Plus one blog post.
I can’t do a thing for anyone else until I can move and breathe again. This thought alone is like a blanket of razors, since the condition of my friends isn’t going to wait for me to get my act together, but still — it doesn’t break the ice.
There are some things that are too much to expect a reasonable person to bear, and anyone with a hellacious disease already has one of those things on their plate. Those who are in the last stage of life have another. Those who are bereaved … you get the idea.
I’m posting this, not to write my diary in public, but because I know I’m not alone. Those of you who can barely move enough to shift the cursor, be assured that I know you’re not alone, either. Somehow, we will get through this. We will melt the ice, with help if we can get it. There is always an afterwards.
There’s one thing that offers this frozen veteran of grief the kind of scathing consolation that’s all I can expect these days: when my time comes to shuffle off this mortal coil, then, if there’s anything left of me to notice or care (as I strongly suspect the more subtle yet intransigent laws of physics require), I will be in the very best company.
Older Brother and his wife, Aunt Krusty, sent me a fabulous little doohicky from a medieval town they visited. It’s a brooch of a common design element used in the Middle Ages: a tabby cat with two tails and fabulous eyebrows offering a mouse, with the legend, “visis mu” — “here’s the mouse.” Close inspection shows both letter “s”s to be upside down. I’ve known a few artisans, and they like making people twist their heads around. Besides, that’s relevant. You’ll see why.
The enclosed card contains the usual wonderfully vague, semi-academic wording saying that animals with two tails (no mention of fabulous eyebrows) are signifiers of evil forces at work, but beyond that, nobody really knows what this means.
I thought some academics kept cats…?
My lovely polyglot friend Sylvie does. Sylvie is a CRPS compatriot who lost a frightening percentage of weight late last year, from which she’s still recovering. Her cat Nala has become a serial killer of the entire species Rodentia, bringing her grisly accomplishments to lay at Sylvie’s feet — or couch, or pillow — with startling frequency. Naturally, they aren’t always quite dead. Not Nala, but a kindred spirit. Photo Tomasz Sienicki @ Wikimedia Commons.
Cats don’t have thumbs, so they don’t really get it about cooking and cupboards. All Nala knows is that Sylvie obviously needs to work on her hunting skills, but in the meantime, Nala can at least help her fatten up.
Also, cats tend to gatomorphize, just as those of us who are close to them tend to anthropomorphize. Nala has no idea that mice, gophers, shrews, and moles do Sylvie no good at all; that, on the contrary, they’re upsetting, messy, and potentially infectious. Nala thinks they’re good, and Nala cares for Sylvie, so they must be good for Sylvie.
She honestly believes that, with all her furry, loving little heart. “Visis mu! Have this great mouse!” So the slaughter continues.
Sylvie’s garden blooms, but her house is an abattoir at times. This is not a bad metaphor for explaining one of the more difficult aspects of being under a doctor’s care.
Most doctors really mean well. Becoming a physician takes an enormous amount of work, which requires great commitment to complete. It’s a hard job with ridiculous hours, especially for the first few years.
That doesn’t mean they’re all bright or gifted or even humane. It just means they believe in the value of medicine and surgery, enough to spend a decade or more learning to do it. There is much care and dedication among many doctors.
Doctors are intensely, let’s say, socialized to stay within the parameters of accepted practice. It keeps them out of trouble, although it may also keep them from true excellence at times.
Mostly, they love those parameters. They love having guidelines. They are truly, madly, deeply convinced of the value of the meds and procedures that they’re trained in. It doesn’t help that, if they put a foot wrong outside of those parameters and things don’t go well, they can lose everything. They are heavily incented, so to speak, to stay inside whatever they understand their parameters to be. And, of course, the peer pressure is enormous.
Now, this is tough for CRPS patients. There is so much variation from one CRPSer to the next, that there are NO established treatment parameters that meet the medical gold standard of being consistent, repeatable and reliable over a majority of patients.
None. Nada. Zilch. There is not one thing that consistently works well for most of us — at least nothing that comes from a bottle or an operating room. Activity, rest, hydration and nutrition all seem to be key, but even their benefits are hugely variable, and you rarely hear about them from physicians.
For a while, it was thought that COX-2 inhibitors combined with membrane stabilizers, came close to being a semi-magical bullet. (Gabapentin/ Neurontin, pregabalin/Lyrica, and so on, are known to most patients as anti-seizure meds, but many healthcare providers call them membrane stabilizers.)
Then it turned out that the Dr. Scott Reuben, the physician who popularized that treatment, was making the numbers up (here, reported to his colleagues and here, reported to science fans.) He was so busy being a puppet of the drug companies paying him, that he forgot what it means to be real.
COX-2 inhibitors were given a general thumbs-down over cardiac effects (which many people with chronic CRPS have enough trouble with anyway) and, as peri-surgical meds, did not live up to Reuben’s promise that subsequent chronic pain would be less.
Ironically, it had already been established that 500 mg of vitamin C two or three times daily for 3 months after surgery does have significant demonstrated benefit, reducing the incidence of CRPS – the most intractable and severe form of chronic pain – by 35-80%, depending on the extremity, extent of injury, and probably the degree of compliance. Moreover, vitamin C is very cheap, as well as very effective. (See extensive links list below.)
The anti-seizure meds, unfortunately for pain patients, did not get removed from first-line treatment.
By then, unfortunately, whole nations (Great Britain and the Netherlands, take a bow) had adopted Reuben’s corrupt recommendations for first-line treatment. It takes a lot more effort to undo that level of adoption than it does to hoodwink an entire sub-economy of peer reviewers and medical specialists, apparently.
The arrogantly reputable journals that accepted his work, and subsequently published other work which was based unquestioningly on his false results, are still trying to live it down. What’s interesting is that other doctors couldn’t replicate his results, so he was the only one publishing these great data… yet journals and physicians continued to publish and follow his recommendations. I do hope the journals revised their “peer-review” process to include more actual, I don’t know, reviewing, perhaps by peers. It took a lot of people to permit and perpetuate Reuben’s false reports. They are not innocent.
It could take decades to undo much of his damage, and meanwhile, the advancement of treatment has been down the wrong track for years, while other more appropriate avenues of treatment have been ignored or even forgotten.
So, millions of CRPS patients are being first-lined with truly obnoxious meds with iffy benefits and ghastly side-effects, rather than being examined as individuals, and assessed as to whether:
neurotransmitter support, most provably with antidepressants, would be more appropriate, given disease-related onset of affective symptoms (antidepressants), sleep problems (tricyclics), or dysautonomia (SNRI);
a short, hard attack of narcotics and aggressive PT would answer in the case of a hardy, active, or young person;
a proprietary or tech-based treatment, like TCMI or Calmare, are indicated for those who show active neuroplasticity or respond well to electrical stim; or
this person is a good candidate for ketamine protocols of one kind or another, some of which are no more toxic than membrane stabilizers.
it might be reasonable to try a more experimental approach which has demonstrated significant promise, notably magnesium infusions, immune globulin therapy, or temporary immune suppression.
Oops… Doctors, as a group, forgot to look at the patients in their excitement to have a designated treatment protocol. “Visis mu! Take this mouse – it’s government approved!” If you’ve worked with government agencies, you know why they’re laughing.
But the doctors doing the offering really think this is a great idea. That’s what the guidelines say, after all, and they are evidence-based – except that that evidence was cooked.
While anti-seizure meds do work very well for some, starting with them reflexively is not reasonable: the cost-benefit profile is worse than most of the other potential first-line alternatives, due to high rates of side effects and comparatively unimpressive rates of usefulness.
Using them as a first-line treatment delays more effective, lower-cost treatment for many people in horrific pain, and, between the delay and the cognitive and neurologic side effects of this class of drugs, causes greater impairment (with higher associated costs) in far too many. It should be a second or even third line treatment, if you go by the evidence that has remained credible – taking a back seat to less fraught (not perfect, but still less problematic) therapeutic agents and interventions.
But the docs who lean on it really think it’s great. “Visis mu! Visis mu! Look – it’s a great mouse!”
Reminds me of my previous pain doctor, a competent technician with a bedside manner directly related to the patient’s appearance. He has a good reputation in his area – which tells you what a lot of rubbishy practitioners there were in the area.
He wanted to shove into the neck of my spinal column a couple of widgets which were the size of Starbucks drinking straws – you know, those really fat ones that you could suck a steak through, if it’s tender enough. Two of those, jammed into a six-inch length of a space that didn’t have enough room for one, and which – as we now know – was already inflamed in much the same way that the spinal cord of someone with a spinal cord injury is inflamed.
He liked it because shoving surgical hardware into other people’s bodies is what he does best, and these widgets have embedded electrodes which could zap the pain signal at the spinal root of my arms and he thought it would work really well and I had the right psych profile for it and this was the greatest thing since sliced bread. “Visis mu! Visis mu! This is a truly excellent mouse which I am shoving smugly up your spine!”
It was a nice idea, and, again, this particular thing works spectacularly well for some people. For me, not so much. In fact, it was a disaster. It was truly worse than the CRPS pain, which takes some doing. The equipment trial still gives me spasms due to the mere memory of the staggering physical trauma it entailed.
Truly, each of us is unique.
Once he realized that I couldn’t accept his mouse, his whole manner changed. Just like a sulky cat, nursing his disappointment seemed a lot more important to him than finding something that would help me.
How could I be so callow and blind that I couldn’t appreciate this great mouse he wanted to give me? There’s just no helping some people! His neglect and disaffection was so damaging I had to fire him and move on to the excellent Dr. Richeimer at USC Pain Center, 4 hours’ drive away and worth the two-night stay in the armpit of LA.
Another dear friend, the angelically kind M, has roughly 3 dozen anaphylactic reactions a year. She is so hyper-reactive to so many things that driving past a town with the wind in the wrong direction could be the death of her. 3 dozen anaphylactic reactions a year, and she’s in her fifties now. Yes, amazing.
She saw a young cardiologist, who did what young cardiologists do: he threw upon her a huge, bloody gopher, covered in prickles and gore. “Your heart is dicky! This could kill you in a year! Visis mu, I can save you! Isn’t this exciting?” I processed this image out of respect for X’s exquisite sensibilities.
Personally, I think the appropriate thing to do is to pick that gopher up and shove it down his throat, but when a patient does it, it’s assault and battery with a biohazardous weapon.
The cardiologist, naturally, is doing exactly what he was trained to do and is wildly excited to have such a thrilling case and such interesting news. She, who already faces death on a weekly basis, should clearly get wound up about this because it might kill her if she doesn’t.
“Visis mu! This is a glorious mou — er, gopher! Check out those charming teeth, those tiny claws, that helpful expression! Awesome!“
A brickbat? A muzzle? What do you think? Words simply fail. All I can think of is applying to him the kind of cat that has nine tails. It’s not a good way to model compassion, let alone tact, however.
As for me, I have to pick a primary doc for myself. My old one retired from private practice, and I miss him, because I could just walk in and look at him and he’d know.
I’m just thrilled at the prospect of training someone new, who will be a generalist treating the peripheral issues of someone with an incredibly peripheral-intensive disease. There will to be many rounds of “visis mu”, as he comes up to speed. And, since it’s all well-intended, I have to find a way to accept one or two mice as graciously as possible. One can only recoil so often before they decide they can’t treat you. “Visis mu! I care for you, so let me do this wildly inappropriate thing, because I’m too rushed to think things all the way through!”
They mean well. They really do.
I never have figured out what to do when a cat, with every evidence of caring attention, brings me a mouse. I try to be nice about it, and that’s the best I can do.
Obit
Sadly, Sylvie’s furry little caregiver, Nala, departed this earth for the Happy Hunting Grounds. By a series of flukes, Sylvie wound up with a rescue cat, Filou (meaning roughly “brat” or “mischief-maker”), who has taken over her care with great enthusiasm — and much less bloodshed.
I’m shielding my friend M for safety reasons, but I can point you to a blog on managing immune suppression and chronic pain with few drugs and much natural care: http://www.tamingthebeast.ca/
Relatively useful treatments for CRPS:
Most suggestions are pulled from the current IASP recommendations for diagnosis and treatment of CRPS or the pivotal work of Dr. R. J. Schwartzman, Dr. van Rijn, and Dr. Breuhl (part of the team that developed the IASP guidelines), with updates from recent science available on PubMed.
The authors have their blind spots and biases, of course, so researching any therapies that sound interesting is a good use of time.
The National Library of Medicine at the National Institutes of Health (U.S.) is an outstanding clearinghouse of articles from peer-reviewed scientific journals: http://www.ncbi.nlm.nih.gov/pubmed/?term=complex+regional+pain+syndrome
Just add the term of the treatment you’re interested in to the MeSH term, “complex regional pain syndrome”, to maximize useful hits.
J’s experience of the holiday of loving and giving was one of manipulating and threatening for a long time. He doesn’t say that, of course; it takes detective work to glean the data from the clues he drops. He doesn’t reflect on the past, but it does tend to cast shadows into his present.
After last year, when I’d kept the holiday out of our home and opened my gifts in private, he said — to my surprise — that he’d like maybe a little bit of decoration and festivity next year. Not the commercial garbage, just a little light.
This year, I put redwood swags tied with burlap bows against the fence and draped a green swag of redwood across the trunk outside.
I picked up redwood cones, which are tiny and exquisite. I dipped them in penetrating epoxy to make them sturdy and non-porous. Then I painted the tips in copper or gold paint, and where I had twin cones on a single twig, I made one of each.
On Christmas Eve, I made lamb kofta that turned out better than any I’ve had in years. It was the first solid food J had had in almost 2 weeks, and he ate half of it in a few hours. It went down well.
We’d gotten new flannel sheets. I dressed the bed in a brighter, perkier version of Black Watch plaid, fresh and soft and soothing.
That was enough preparation for me, clobbered by the worst humdinger of a cold I’ve had in years.
Then Christmas day dawned, sparklingly bright and crisp. Once he’d had coffee and I’d had tea, I made blueberry pancakes (recipe below) which he told me were the best I’d ever made.
We noodled around the house and yard all day, warm and content. I opened my gifts in the living room (he’d gotten and opened his earlier.)
I made a leopard-print minkee shawl for his dog, who has been swanning around ever since, clearly feeling as breathtakingly stylish as a modern Grace Kelly.
The satellite TV was out, but I figured out how to connect my computer to the new TV and stream Netflix on our gorgeous HD screen.
Like many people, he has deep scars from mainstream religion. When he started climbing down that rabbit hole, I told him the history of the Christmas holiday, which dates back thousands of years in Europe. People collected under the largest available roof for the armpit of winter, keeping warm and entertaining each other, and those who had more shared with those who had less. Everyone got through better together than they would have alone, and familial and social bonds were reconfirmed ahead of another year of hard, often lonely labor. When the Church moved into Europe, they moved the celebration of their Savior’s birth from springtime to a few days after Yule, because the good ones loved the season of warmth and sharing and the scheming ones could spot a good opportunity. (I told him that the 3-day margin gave people time to sober up from the Solstice bonfires and clean up in time for Church.)
That isn’t about faith, just about historical data. Belief creates its own reality, and I respectfully support everyone’s right to choose and structure their own beliefs. All honest forms of worship make the world better, in my view. Amen.
The history lesson took the sting out of Christmas, and the last detail made him laugh.
After a week of prostration with that awful cold, he actually got up and washed all the dishes. The kitchen was sparkling by bedtime. It’s the little things that really tell you.
From about dusk on, J kept saying, “This is the best Christmas I’ve had in years.”
Something tells me they’ll get even better.
Recipes
These are Isy Recipes, so they don’t have too many ingredients or too many steps, and every ingredient has something fabulously useful about it.
Pain-cutting Pancakes
2 bananas, mashed
2 eggs, beaten
1/4 cup flaxseed, ground
1/4 coarse raw sugar
1/4 package Boreal blueberries
Beat everything together and let it sit while the pan heats to medium heat or slightly lower. These cook low and slow, not like flour pancakes.
Pour the oil off the top of your almond butter into the pan. If you don’t have that, use safflower oil. Either one makes a wonderful crispy edge.
Spoon the batter into the pan about 3-3.5 inches (5-6 cm) across and up to 1/4 inch (.75 cm) thick. If you’re using the almond oil, they may fizzle and make white foam with a lovely scent. Cover the pan. It takes at least 5-7 minutes for them to cook well enough to flip in one piece. Cook the other side for slightly less time. Serve with Kerrygold butter and non-osmosed maple syrup, if possible 🙂
Kofta Kebab
1 pound (2.2 kg) ground lamb
2 eggs
~2 tsp natural mustard
2 handfuls of finely chopped spinach (I couldn’t find the parsley) Spices:
Lots of ground cumin
black pepper
1 tablespoon (scant palmful) basil
2-3 tablespoons parsley (I found it)
Mix everything well with your clean hands. Heat 1/4 inch (.5 cm) of grapeseed or olive oil in a frying pan over medium high heat, hot but not smoking. As the oil heats, take small handfuls of meat and squish them into a lozenge shape, laying them out on a plate or board. Drop them into the pan, one batch at a time. If you made the lozenge shape rolly-polly enough, you can roll the kebabs over in the pan. Only turn them once; more often and the meat gets tough.
When they are crispy gorgeous dark amber, scoop them out and lay them on brown paper to drain. Eat with your fingers if you can’t wait, like me, or with ketchup if you’re a total yahoo, like J.
Lamb has lots of zinc, which is good for fighting off viral infections.
Whatever you celebrate, may this season be peaceful, fruitful, loving, and kind to you.
May all your pain lift. May all your wounds heal. May all your illnesses get completely better.
May your weaknesses become secret strengths, ready to your hands. May your strengths bring nothing but benefits and joy to you and the world around you.
May those you love the most, appreciate you just the way you are. May those who love you the most, be recognized — and valued — just the way they are.
May you have all that you really need. May it truly gladden you.
Most importantly, when you can’t take care of yourselves, take care of each other. It generally works.
I tried to find a song for Ethan, who did love music, but it wasn’t working. I’m not much of a poet, frankly, but it was the only thing I could do.
Here is Ethan’s poem from me.
We did the impossible quietly
Getting the boat into harbor
and keeping it safe through the night
Tight hugs abeam unstable piers
My little brother, so big
When I thought I'd die of weakness
You showed me my strength
And, smiling, would not accept less
Tight hugs killing off mortal fears
My little brother, so big
Long nights talking and talking
'til your gyroscope turned and you looked
at the first stains of dawn on the water
Tight hugs at the end of the tears
My little brother, so big
When you turned searching eyes upon me
For the integrity that rooted your heart
You had the grace to thank me
Tight hugs through difficult years
My little brother, so big
You were so impossibly larger than life
I wrote you into a comedy of death
And you were the best thing in it.
I miss your hugs, my dear.
It’s really too bad (a bit of staggering English understatement, there.) He had found the right life and the right wife, and I was beginning to think I’d eventually meet his children.
I hope he’s free of the demons that hounded him so mercilessly. Wherever he is, I expect he’s raising Hell — kicking righteous butt and making the world fall in love with him, and doing both with equal, unquenchable vigor.
TV flickers at a rate guaranteed to put the higher cognitive functions to sleep. LINK It is literally, and specifically, hypnotic. Anyone surprised?
Some people like that, although I don’t. Some people need that, at least in some measure.
Every waking hour when you’re at home? There’s a problem there, even when you don’t share a house with someone with longstanding CRPS.
I learned to hear the words behind the words when I was an ER nurse. I had to be able to know the truth from the lies to the self, the lies to others, and the lies to the universe. I had to know when people didn’t care if they were lying or not.
Our brains can split the channels of verbal communication, so that the literal meaning of the words goes into our brains via one logical branch, the subtext and connotations of those words go into another, the emotional load the person is trying to convey goes into a branch that analyzes conscious manipulation, and the emotional load the speaker feels about what they’re saying — or if they’re even paying attention to it — goes in via a subtler branch. I learned to parse it quite specifically.
Some people thought I was reading their minds. I was just hearing their speech.
Now you know why, much as I loathe and despise the modern Democratic party, my outraged contempt for the modern GOP (and all its wacky little offshoots) is even greater. The sound of all those relentless, delusional lies is unbearable to me.
My mostly lovely partner, J, has TV again for the first time in a couple of years. Like the Scot that he isn’t, he wants to get the most out of his monthly investment — or that’s his excuse. In any case, he has perfected the most effortless way to get me out of the house: keep the TV on.
Every.
Waking.
Hour.
There are only so many times you can argue about the same thing before you realize you’re utterly screwed, and the most important person in your life is just going to torture you until something breaks.
No wonder I can’t get any work done. It’s too darn cold to be outside for long, so I have no choice but to have my brain beaten into a pulp day after day.
I can’t get the message through to him about what it does to me. He thinks I’m being dramatic or controlling, “because that’s how women are.” (Yeah. I know. Living with someone with CRPS is hard, and he uses the “woman” excuse to think about something besides the fact that this is such a hellacious disease. Moving right along…)
It’s not how *I* am. I’m a weird woman, I readily admit it, but I am not interested in interfering in someone else’s self-medication, as long as it does no harm to others.
That’s a major freaking caveat.
My ears have been ringing for days now. Early hearing loss runs in my father’s family, and the absolutely relentless natter of evasions, irresponsibility, bad acting and recreational conflict are doing significant damage to my hearing mechanisms, not to mention what’s left of my capacity for reason.
And J wonders why I’m getting more unhappy and short-tempered.
Dad protected his hearing and commented on his symptoms and how he treated them. He swore off music and TV for days when his ears started ringing. Moreover, as heads of the family, he and my mother limited TV time to two hours a day.
Lucky cuss.
When J and I leave this area, he thinks we’re going to live in a trailer or something as we wander around the country. While 90% of that is a fine idea (as long as I’m strong enough), we are definitely going to have to solve the TV problem. Personally, I’m preparing to “accidentally” drop something heavy on all the TVs in the vicinity, and apologetically give him a small laptop set that doesn’t even have speakers, just a headphone jack.
I think I could just about live with that.
P.S. It’s worth noting that, every time I write a post about J, I read it to him before posting. I don’t sneak around behind his back at all.
His comment halfway through: “Okay, I’m prepared to split this 50:50.”
His comment at the end: “Okay, I’m just off to go kill myself.”
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.
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.
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.
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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.
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