My gut has a mind of its own

I take good care of my brain. I work hard at learning more all the time about how to support and foster it in spite of this tedious collage of illnesses. Neurology interests me — always has. Now that it’s so personal an issue, it’s positively compelling. Neurology’s very complex, and hooks into everything — fascinatingly fractal, in the way it repeats the same physiological “phrases” to very different effect in different parts of the body in response to different changes.

I’ve been wrestling with my gut this past year or so. Lately, it looks and feels like someone’s taking a bicycle pump to it and bringing it up a little more every day. When it interferes with your breathing, that’s a lot of bloat!

I’ve found the gastrointestinal (GI) system to be a bit of a trial. It’s very complex, and hooks into everything. There’s no getting away from the endless iterations of its main roles of sensing, transforming, processing, and discarding: at the intracellular level, intercellular level, endocrine level, organ level, and so on.

Some observant part of my brain notes that the same characteristics I find appealing in neurology, are the same ones I find appalling in gastroenterology.

And the gut has so much STUFF in it…

  • The liver parked under the ribs at one side, the spleen at the other, holding half your blood at any one time, right across the top of your abdomen;
  • The endless loops of squirming intestine, stretching and shifting within their blobby webs of mesentery, shoving along several pounds of food residue at any one time along its length;
  • Lymphatic nodes linked in constellations in the shining webs of mesentery and glistening loops of intestine, ready to respond instantly to allergens or pathogens or anything else in your GI tract that could make your body revolt;
  • Major vessels, the abdominal aorta and the vena cava, coursing alongside the spine, apparently apart from the mess, but branching out so thoroughly and so minutely into the organs and the mesentery that the smartest rats in science couldn’t make it through that maze;
  • The tenth cranial nerve, forming an intimate and instant link between your brain and your gut, linking your brain directly to the largest grouping of nerves outside your brain, the nerves that surround and penetrate your organs and your gut, embedded in and supported by that amazing net of connective and fatty tissue, the mesentery;
  • And let’s not even go into the endocrine system, responding minutely — at the level of individual molecules at times — to the constituents in your food, the way you feel about them, what you need them for right then, what else you’re sensing at the time, and even what time of day or year or month it is… then hooking the info back out through the nervous system, cardiovascular system, lymphatic system, and of course the gastrointestinal system.

I was sitting in my Epsom bath today, mulling this over after the battery in my e-book died. I had done the squishing of my legs and arms with the washcloth, and ran it over my neck and back and sides too, but had a terrible time making myself touch my abdomen. It felt just awful. It also felt like it was somewhat detached from me, like it was floating a couple of inches off my back and spine, simply hovering, slightly displaced, in front of the rest of my physical self. Touching it was deeply upsetting in some way, triggering a wordless revulsion.

This is not an unusual experience for CRPSers. We often feel as if the affected parts of our bodies are almost separate from us, or like they belong to someone else, and touching them is — even apart from the allodynia — a crankiness-inducing, unpleasant experience. It’s a perceptual trick the brain plays, probably part of its general effort to manage more ghastliness than it’s really set up to deal with.

One reason I do the Epsom baths (and the stretching, and the activity, and the relaxation meditations, and the aikido/tai chi/qigong, etc.) is to stay on good terms with my body. That whole self-alienation thing is just too wrong, to me — my life is always best when I’m in my skin, so to speak, whether or not my circumstances suck.

Also, to be fair, my body has done nothing wrong; it just got some of the shortest darn straws out there, and it’s doing its mighty best to manage that. It doesn’t deserve my loathing at all. So, I work to keep on good terms with it.

This is probably one reason why I’m still often functional, frequently productive, and can still walk a mile without sitting down to rest on a good day — even after 15 years with this disease on little or no medication (here’s why no CNS depressants like narcotics, here’s why minimal other meds.)

Anyway, there I was in the bath, watching my belly inflate and almost float away, even though I was Epsom bathing (which usually calms my systems down), and realizing I was finding it unbearable to touch the darn thing, even though it was practically in front of me.

I thought, “Neurology is not that hard for me. Why is gastroenterology so impenetrable? Why am I making so little headway on figuring out this stomach stuff, and dealing with so many setbacks? Why do I get these little tailspins of terror about it? What’s going on in… the second largest collection of nerves outside my brain?” I said, as the lightbulb over my head turned on.

I thought, “I’ve been having a lot of trouble with gastroenterology. But I can usually do neurology.”

And the word for the neurology of the gut, ladies and gentlemen, is neurogastroenterology. (Break it down: neuro meaning nerves, gastro meaning stomach, entero meaning inestines, ology meaning study of. Now you have it.)

I’m pretty sure I can do that. I can sure take a stab at it.

First lesson: review the vagus, a.k.a. Cranial Nerve X. It’s a doozy.

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Battle for the Brain

It’s been a crazy winter, even for New England. Those of you with pain syndromes know what that means: changeful weather means unstable pain neurology which means more pain and less brain.

I’m so much more stable here in other ways that I found it frustrating to be soooooo daffy. I wanted to tuck that daffiness back behind the dam I can usually hide it behind, and use the creative and practical components of my mind to drive what I show in public.

I revised my supplements a few times, and finally found a routine that does seem to stabilize things a bit better, although it’s kind of hard to tell (it’s like inspecting a crystal with the lens inside, or possibly the other way around.) I’ve stopped fiddling, and will let the test of time tell me how this regime really does.

Also, we’ve had 2 or 3 strains of flu (so far) dancing through the household. The second one was nice, because the really awful part lasted about 5 days and it had an incubation period of about 6-7, and we got it one by one; as soon as 1 person got really sick there were 2 people to take care of him or her. In one case, this meant miso and ginger soup; in another, raw garlic in mashed potatoes; in a third, goldenseal and vitamin C; in all cases, loads of homemade chicken soup and buckets of fluids.

I’m not sick of homemade chicken soup, as every pot is different, but I am *so over* herbal tea, broth, diluted juice… everything. I had a big mug of plain hot water yesterday because at least I’m not sick of it.

I find that viruses affect my brain. They have for as long as I can remember. One of the first signs of viral illness, for me, is getting cranky and forgetful all of a sudden. With all these brain issues I have now, it just turns the volume of pain, reactivity, and goofiness up to 11.

Into this brew of brainlessness, add one more element of confusion: my most expensive brain prescription, Savella, looks exactly like my cheap antihistamine, generic Zyrtec; I take them both twice daily.

You can see this coming, can’t you…

I found out a week ago that I’ve been double-dosing on Savella and underdosing on Zyrtec. (No wonder my asthma has been acting up.) That, more than the virus and sinus activity, would explain the intense dizzy spells, disembodied feelings, uncharacteristic irritability, and eerie emotional detachment from my nearest and dearest. (No medication is harmless. Now you know what an overdose of SNRI does to me.) It was a relief to know what really caused all that, but it still sucked to go through it.

So, thanks to the daffy-dam getting burst by those bugs, I blew my brain out of the water (and also blew about $150!) AND set myself and my housemates up for a few weeks of needless unpleasantness. I’m still recovering, but well enough to think coherently about it, so that’s a huge improvement.

To my morning pre-pill routine of apple (malic acid) and sunflower butter (digestible folate, minerals and anti-inflammatory oil), I now have ~1/2 cup of defrosted Boreal blueberries (intense brain food with anthocyanins and antioxidants for recovery) topped with grated aged cheddar (intense brain food with dopamine precursors and saturated fats for those nerves) during and after pills. My pills go down better, and bit by bit the fog seems to be clearing.

Now that I might be able to think my way past a soggy Kleenex, it’s time to get that “activity” thing going again… if I can remember how. There is absolutely no substitute for activity, because it balances the autonomic system, improves neurochemical stores and their behavior, and can even reduce pain, with *no negative side effects* — as long as you don’t get hurt or over-do.

I had a dream last night of dealing with broken gym equipment, and of absolutely longing for good t’ai chi instruction. Until I find it, I’ll work with what I’ve got: my class notes and a couple DVDs from my old Academy. It’ll get me started, and then we shall see.

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Losing Our Angels to Suicide

A friend I’ll call A died of suicide last night. It’s easy to say of people that they are rare and radiant souls once they’re gone, but A is the sort of person who was generally agreed to be a rare and radiant soul even when she was alive. Pretty angelic, really.

Suicide is a tough gig for all concerned, but being suicidal is living hell. I’m going to try to present some information in an accessible way, but this is an emotional time (it’s also deathiversary season for some of the biggest losses in my life, and there have been more deaths than usual this winter) … I’m very upset and very angry. It’s liable to show. Anyway, here goes…

Most of the time (not all the time), the deed that causes self-death is impulsive, which is the point of the 3-day hold in psychiatric hospitals: get them over that bump, then their coping skills come back, and then they find a way forward.

In cases like A’s, some survivors want to know why our loved one didn’t reach out, didn’t let us know ahead of time. Some want to know why this person “didn’t love us enough to stay.”
That’s a common feeling after suicide. These are all very common responses. Thing is, they miss the causative point.

Reality check

Here’s the thing:

Stop being so selfish!

It’s NOT ABOUT YOU. This is a tough one to swallow because you’re the one left alive and hurting, but it’s something to be faced in order to understand how this could happen.

It’s about being in so much pain that continuing is intolerable and there is no way this person can find to make it stop. Can you even imagine that? If not, then who are you to judge? If you can, then why are you blaming the victim?

Do you think she didn’t try hard enough, or know enough to battle this more effectively?

Actually, that’s a fair question. Some people don’t know enough, and need the chance to breathe, reboot, and find another way forward. (Most people who attempt suicide fall into this category.) It’s not an unreasonable thing to ask, so let’s look into that.

Some things can’t be fixed

My lovely friend A was a sophisticated, educated, well-informed consumer of, and professional in, the health care industry and effective alternative therapies. She really knew her way around.

I have a pain disease that, if I have to be truthful, hurts more every year. I’ve had over 15 years to ramp up to my present level of unthinkable, brain-blistering agony — and to find ways to manage it along the way. I can kid my mind most of the time that the pain is hardly there. I’m not likely to kill myself any time this year, though I might get flattened by a bus in a fit of absent-mindedness due to masking too much pain… you never know. (I’ll keep wearing bright colors and getting assistance around town, so don’t worry unduly, Mom!)

My friend A had a painful condition evolve recently that wouldn’t budge despite much work, and a surgery with… interesting characteristics. I sure don’t need to spell that out for those of you who’ve had, cared for, or performed surgeries. One of her main nerve branches was involved, which tells you the rest. It was risky, tough, and fraught. She knew that. Surgery was the only way to avoid the dreadful situation she faced if she didn’t have it.

By the time she made her last tragic decision, A could easily have been in a level of pain comparable to what I live with, but she did not have 15 years to ramp up. Most of that mountain of agony landed on her inside of a few weeks.

She knew what was going on in her body and worked for years to correct it without surgery.

She knew what the surgery might result in and she tried it anyway.

She knew her options.

She knew what to do to mitigate risk and optimize healing.

It’s likely that she did everything that could possibly be done.

It’s likely that there was too much pain and no way to escape it.

Sometimes, some things can’t be fixed.

I respect her choice. I hate it, it makes me miserable, but given the circumstances, I respect her choice as I respect her right to make it.

I don’t blame A. I wish that things had been different for her.

Please remember the compassion that was at the core of her spiritual and professional life, and return it to her as well as you can. She may need your compassion more than ever, because the end of her life was so awful, and she worked and fought so hard to make it.

She loved you. She loved us all, in her endless outpouring of loving-kindness and intelligence and determination. Please, try to give some of that back to her, now when it’s no longer easy.

Step Up

Of course you’re angry to lose wonderful people to suicide. Want to do something about that?

  • Vote for universal health care, so people like A can get timely care and prevent minor issues from becoming major ones and then becoming deadly nightmares. Because this should not have happened in the first place.
  • Lobby for universal housing and emergency accommodations in every state, so people like my brilliant friend Cross don’t have to choose between being murdered by a caregiver or taking their own lives, because NO OTHER OPTIONS EXIST.
  • Get your elected representatives to re-fund, and stop de-funding, mental health services and social safety nets, so my gifted friend Ethan didn’t have to shoot himself in the head to make the PTSD nightmares stop. Every dollar spent on these programs saves between 10 and 800 dollars in the costs of cleaning up the failures resulting from their absence. Our economy cannot afford that kind of constant, suppurating loss.

YOUR VOTING RECORD AFFECTS THE SURVIVAL OF THOSE YOU LOVE.

Don’t step into the voting box in the hope of choosing your next drinking buddy; the POTUS will never drop in at your neighborhood dive. Try to remember you’re voting for your next Chief Executive. This needs to be someone who’s smart enough and wise enough to do the job of leading a huge country that’s in serious trouble.

If you feel that, against reason and compassion, against economics and decency, you really have to vote against these policies or vote in those who oppose them, then don’t EVER complain to me about losing people you love to suicide, or maltreated illness, or poverty, or homelessness. These deaths are optional 99.9% of the time, and I have absolutely had enough of them!

This worm has turned

I used to be vigorously opposed to suicide. I spent too many hours coding people who had no choice about whether they lived or died, so that the occasional attempted suicides I treated in the ER just made the bile rise in my throat. Those idiots were bloody well going to live whether they liked it or not, and if they reached consciousness, they were getting a short and fiery talking-to from a short and fiery RN.

One day, I confided my thoughts to a longtime trauma counselor. She stopped me dead when she said, with great pain and exquisite kindness, “They do that because they can’t think of any other way to stop the pain.”

I tried to imagine so much pain and so much trapped-ness… and I couldn’t hate them any more.

And then, years later, I developed CRPS… then fibromyalgia… then dysautonomia… and, this week, I’m getting screened for a couple of cancers.

Those of you who follow this blog know that I spent a few years clinging to life by a thread. The pain, disability, and relentless, pounding losses and brutality of the world on the suddenly-disabled, on top of an ongoing roster of bereavements around me, very nearly finished me.

I was suicidal for some of that, only I was not going to screw it up; if I did it, I was going to do it properly. So there were no attempts, there was a thorough exploration of the idea. (At the very bottom of my personal root under the final level of Hell, I found … curiosity. I could not rest until I found out how this story went. Not only would I miss my funeral by several days, I’d never find out if we got a cure in my natural lifetime, if I ever figured out how to blog, what exactly CRPS is, who I had yet to meet, or anything. That was more unbearable than pain for me: unsatisfied narrative curiosity. I can’t explain it, I can only report it. I’m still working out how to crash my funeral.)

The point is, I’m pretty familiar with the landscape of endless pain.

I understand, with diamond-sharp clarity, that there is a point where a person simply shouldn’t have to put up with any more.

I know, as I never did in the innocence of my ER days, that there is such a thing as No More Options.

The word “unbearable” is no longer just an adjective; it has real meaning. Some things should not be borne, and that’s bad enough, but some things really cannot be borne. What then? Do we turn our backs and shrug, feeling we’ve done our jobs?

Those who’ve survived the suicide of someone you loved, you have my absolutely heartfelt sympathy. It’s awful, peculiarly and specially awful. There’s nothing like it.

If you’re really outraged, turn your anger onto a suitable target: the systemic failure that made that cherished person’s life unlivable.

That would honor them, in a remarkably constructive way.

I’m off to make sure I’m registered to vote tomorrow. I don’t want to sit this one out. I’m torn up and miserable, and I want to honor the memory of A and all my dear departed angels.

How

I

miss

you.

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To fail myself is to fail others, and doesn’t that suck!

My desk setup is nonexistent and much of it still buried in unpacking. I wish I’d been writing some of the wonderful blog ideas that have passed through, but I didn’t. Rather than trying to reconstruct them from addled hindsight, I’ll just go on as if I had a whole nest of posts to plop this one into, and go on from here.

As my desk situation indicates, I still feel perched, rather than settled. I’m going to have to find a rental in the spring and then start looking for a miraculously good deal on a house to buy after that, so it’s hard to unpack all the way.

Moreover, California is still extending opportunistic tendrils into our wallets, task lists, and attention.

And then there are the periodic health crises: a bit of allergy exposure here, a bit of partner’s chest pain there, a sprained wrist from me overdoing, a sprained back from him overdoing… you know. Stuff.

Oh, and the holidays, with a trip and gifties to prepare, mostly for people I haven’t seen for over a decade… no pressure.

These aren’t excuses, they’re reasons. I don’t really believe in excuses; it’s largely an irrelevant concept. It’s for an injured party to decide if I’m excused, not me, so “offering an excuse” just doesn’t make sense. I have reasons, but so does everyone.

Here’s the thing I feel a need to mention my reasons for:

I’ve let my self-disciplines go. T’ai chi, qigong, meditation, reiki, relaxation exercises, stretching, even listening to chamber music — I think about them, but I don’t do them. I still have my morning routine, or at least half of it… if that… OK, yeah, my self-disciplines are pretty much out the window.

Like medication, meditation only works if you use it.

After weeks, actually months, of coping and managing with (and concealing, because that’s what chronically ill people do) my rising instability and neural chaos, I’ve finally started skidding off the cliff.

As for the effect… I’m trying to come up with a good image.

Imagine a patch of sea. I’m in a well-rigged little sailboat, noodling along in a fair wind.
view forward from deck of sailboat. Mainsail on right, jib on left, Marin headlands and Golden Gate visible between.
The oil of willpower is constantly sprinkled on the water’s surface, keeping it smooth and flat, easy to sail along on.

Underneath, the weedy patches pluck at the propeller and keel, the barnacles grow restive and start plucking back, the creatures swimming underneath get bigger and more voracious, and then they get big enough to break the surface now and then.

More oil! Keep sailing!

Those surface-breaking tiddlers get chased off by the real mondo beasts. The boat is getting sprayed by the monsters breeching.

Everything’s fine, I’m too busy to pay attention, la la la la la I’m not listening!

Also, the wind is acting up. The boom is starting to swing across at head-height.

Just a little farther now! More oil! /BOOM/ It’s OK, I’m fine, just a flesh wound!

Unbeknownst to me (since I’ve got the radio turned off, because I’m not listening), there was a string of earthquakes.

Since Banda Aceh and the meltdown at Fukijima, we’ve all learned about how earhquakes make waves. The shock of the quake trundles happily along the ocean floor until the ocean floor rises towards the shore. Then it sucks the landward water into itself and brings it all back as a tsunami.
water_tsunamiformation
If you’re afloat and listening, you move out to deep water, sail over the bump without losing stability, and you’re fine. If not… cue exciting sound track and hire George Clooney for the (possibly race- and gender-inappropriate) lead in another disaster movie.

There was a wave and I wasn’t in deep water. I didn’t handle it well; I was dysregulated and chaotic for days. Days. I was so dysregulated and chaotic I didn’t even see that that’s what I was, until it was pointed out to me — by the person who’d just gotten butt-kicked by an earthquake. That is not a fair burden to put on someone who’s already having trouble.

I have a personal meme about being good to friends. This is important for us spoonies (as chronically ill people sometimes call themselves.) My disease treats me like crap, but that isn’t a license for me to treat others like crap.

People who are protected from the true impact of this illness need to not get it at close range, or they run away (understandably) feeling as if they just got burned.

People who have this illness can understand a lot more, but are able to do much less.

I have to communicate appropriately. That’s my job in each relationship.

Basically, humans are emotionally fragile creatures and — whether I want to be judgmental about it or not — I can either respect that, keep the worst of my crap to myself, and have good relationships; or I can expect them to be as tough as me and to do so on my schedule, neglecting that they have to be as tough as themselves on their own schedule, and wind up isolated. Because I’m human too, I’m emotionally fragile enough that being isolated sucks.

I absolutely dropped my backlog of frustration and pain and rage on someone who was about the last to ever deserve it. That’s quite a breach of trust.

I stopped taking care of myself. As a result, I fkdup and hurt someone else. Now I have to own up (did that), figure it out (working on it), and do what needs to be done (re-integrate my practices) to prevent it ever happening again (and find a way to cue myself before I get bad: the missing piece.)

At that point, I’m allowed to make amends. It’s another tweak of my logic that I can’t make amends until I’m sure I won’t make the same mistake.

Being a spoonie is hard work. Part of that work is these time-intensive disciplines that seem like “oh how nice, you’re so cool, I wish I could do that” — but, as it turns out, are really not optional if I want to function.
Allie Brosch cartoon,
Why I need to do my disciplines: to stay out of this pit with Allie.

BTW, do you notice how people excuse themselves by saying, “I wish I could do that”? I listen for these words coming out of my own mouth. It’s a sure flag that I’m throwing the baby out with the bathwater. Oh, a little extra effort up front to save a whole lot of trouble later on? H’mmm…

We all screw up at times. The consequences for spoonies can be life-threatening, if the wrong relationship gets ruined. Handling these issues is part of “living anyway” in the face of profound disease. It’s harder to figure out and harder to repair the damage, because of the nature of central nervous system diseases. So, dear reader, I’ll try to stay on the right side of the line between washing dirty laundry and discussing a common issue here.

We often tell each other, “You can’t take care of others if you don’t take care of yourself.” That’s a tough one for caregiver personalities; we’d much rather take care of others than ourselves. However, it was through failing to take care of myself that I actively hurt another. That is a whole different octave of problem. I guess I’d better learn this lesson.

This is a lot of thinking for a breached boat. I can do it, though. I must. I’m still a long way from harbor.
boatsSBMarina_night

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How I find my doctors

It’s not easy to find providers who can pay attention to the people in front of them and think their way out of a wet paper bag at the best of times, especially in the increasingly money-oriented and depersonalized model of care that grows and spreads out from the US like a bad rash.

When you’re looking for a specialist in a rare disease like CRPS, it’s even more interesting.

Sources for lists of providers


The online info-and-education site, RSDS.org, can send you a list of providers if you write to them and ask:
http://rsds.org/finding-a-crps-specialist/. More usefully, though, they also provide a list of links to medical-specialist licensing board sites, where you can find specialists in your region.

I checked these out.

American Board of Pain Medicine

Enter your city, state/province, and country in the fields provided; choose your target category (Anaesthesiology, Physical Medicine & Rehab, Neurology, Psychiatry, etc.) to find someone board-certified in that specialty; and click Find.
http://imis.abpm.org/abpmimis/abpm/directory.aspx

American Academy of Physical Medicine & Rehab

Same as above but with better instructions at the site.
https://members.aapmr.org/AAPMR/AAPMR_FINDER.aspx

American Academy of Pain Management

This very useful search tool includes a range of natural, ancillary, and supportive fields of care, not just physicians. It also allows you to set a distance, so you can expand or limit your commute as you see fit.
https://members.aapainmanage.org/aapmssa/censsacustlkup.query_page

Last but not least

Of course, if your insurance provider has a specific list of providers they’re willing to pay for, you may have to start with the list they give you. That simplifies the process initially.

Using online reviews rationally

Having found a list of specialists, I strongly recommend reading lots of reviews to find the one who suits you the best.

That will be different for different people, of course, because we have different bodies and we each have found that certain kinds of things work best for us; doctors, likewise, have different brains and are inclined to use a distinctive set of treatments, believing that that is what’s best.

So, if possible, we probably want to find a doctor whose approach and treatments bear some resemblance to our own.

Excellence

In addition to that, I recommend finding someone with over a decade of practice. There is no substitute for experience. It’s the only way that judgment — that subtle sense that takes in a lot of info subconsciously to arrive faster at a better result — can develop.

Excellence takes time. Extensive research on excellence indicates that 10 years is the functional minimum to develop it.

Personally, I tend to go for 25-30 years. I know that I require a collegial relationship with my doctor, and it takes an unusual degree of poise for most specialists to handle that gracefully. Also, I really need to be treated by someone who knows more than I do, and the longer I have this, the rarer that is….

Review sites

List of review sites I’ve used

Doctor review sites I’ve used include:

Yelp.com
ratemds.com
www.vitals.com
healthgrades.com
zocdoc.com

Using review sites rationally

Once I get a list of specialists, it’s pretty easy to screen out the majority on the first pass, on the basis of inexperience or irrelevant experience. Some of these review sites, like ratemds.com and healthgrades.com, show the education, experience, rewards, and publication highlights for each physician. (All of this is public info.) These data make a great screening tool.

I only need to do in-depth review reading for less than a dozen doctors, usually. I don’t feel comfortable with less than 4 review sites for each doc I take seriously. Each site has its own slant, so I prefer to triangulate on each provider’s patient relationships from different sites.

Caveat emptor: It’s important to look at review sites with my brain plugged in and working. We know that some reviews are posted malevolently, and that everyone — including doctors — has a bad day. We also know that everyone — including doctors — has got their blind spots. That’s fine. I’m looking for PATTERNS, not exceptional instances.

For instance, one memorable doc treated beautiful people very well, and everyone else very dismissively. When his attention was engaged (which, for him, was about looks), he was intelligent, appropriate, and did outstanding work; these are valuable traits. Therefore, I’d recommend him (with an explanation), to friends who meet the age/BMI criteria in his sweet spot, because good care is good care — but I’d emphatically warn against him to the rest!

Last time, I wound up choosing a doctor who had a super high proportion of “he listens to me” remarks, had over 30 years of practice, had started in psychiatry (which indicated a more human-oriented and less problem-oriented approach, I thought), and did charity work for pain in his own time. That turned out extremely well. I wish I could get him to move across the country now, because I hate having to start the search all over again.

Now that I’ve got all my links in one place, it’ll be a lot easier.

Recap of my process

1. Create a list of potential providers:


Choose an appropriate specialty, such as..

  • anaesthesiology (training is oriented towards meds and procedures)
  • physical medicine and rehab (training is oriented toward physiotherapy and mental discipline)
  • psychiatry (training is oriented toward neurochemistry and life habits)

Choose an appropriate level of experience,with 10 years as my recommended minimum.

Make a comprehensive list of possibilities in your commute distance, using one of the board-certification bodies above or the list your insurance company provides you with.

2. Narrow it down to what makes sense:


First, quick pass through the list: screen for appropriate specialty (you’d be amazed at what winds up in those lists) and experience.

Second pass through the list: Start looking at online reviews. Cross out those who do a great job of pissing off their patients. Again, you’d be amazed… Every single doc gets a certain number of “he treated me like crap! I’ve never been so insulted in my life!” remarks, so I don’t notice a few of those, but when they predominate, out that doctor goes.

Third pass through the list: I look at 3-4 sites containing online reviews for the surprisingly short list of names I’ve got left. Some reviews are cut-and-pasted across sites, so I count those only once. This is where a pattern of personalities and approaches comes across.

Final triangulation: These impressions are easy enough to check by looking at the doctor’s web presence — activities they’re involved in, published work, what they do in their spare time (I find doing disease-related charities more compelling than golf club or Rotarian memberships, for instance), and I’m quickly down to 1 or 2 practitioners.

From there it’s a very simple choice.

3. Pick one.

If it’s a hard choice, I’ll call the office and ask to talk to the nurse. The staff a doctor hires have an awful lot to do with my experience there, so, by the time I know the doc has met my other criteria, incompetent or stupid staff is a perfectly reasonable deal-breaker.

I’m willing and able to travel quite a distance for a good provider, and this makes it a lot easier for me to find one. I’m deeply indebted to my partner for being so willing and happy to do so much driving on my behalf. It makes an enormous difference, and I’m suitably grateful.

I hope you all can find the right doctor where you need one. There is simply no substitute for good and appropriate care.

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Don’t abandon yourself

Um, I’m embarrassed here, but WordPress decided I wanted to publish this instead of keeping it as a draft, despite my (I thought) clear button-clicking. And after all this work, naturally, I’m too clobbered to figure out how to back out and fix that. So I won’t advertise this until it’s done. Meanwhile, enjoy reading the beta version, if you want…

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Don’t abandon yourself

As individuals and as a group, we have far too much experience of being abandoned by those who are supposed to care for us and those who, we believed, cared about us. Sooner or later, those of us with invisible disabilities in general, and disruptive neurological and pain diseases particularly, *really* learn who our friends and allies *truly* are — if we have any at all. It’s a brutal lesson.

On top of this, those of us who survive the initial assaults of the disease — not to mention the staggering rounds of betrayals and abandonments — tend to be rather driven. If we weren’t when we started, we sure are by the time we get through those ghastly shivarees. We can keep going by will alone, without the muscle, the memory, or the means to do so. We do it anyway.

In the long run, this is a skill that needs to be used selectively. It gets us through the pinches and punches of life, but we have to learn when to turn that off and take care of ourselves, as we wish others had taken care of us.

The trickiest lesson of all may be, how not to abandon ourselves.

It’s not that hard. It’s difficult, but it’s not hard. The trick is learning to walk fine lines, using our judgment instead of our impulses — which are a LOT more impulsive because of the neurochemistry of relentless pain.

The deck is stacked against us. But we are still in the game.

Here are some notes on the distinctions we have to learn, even when our brains can’t cooperate. The fact that we get as far as we do is astounding, when you think about it.

H/The difference between comfort and care

There are habitual comforts that belonged to our pre-disease life, and care that belongs to the present. I’ve found that care itself has become very comforting, so the work of leaving behind old comforts that suddenly came with a very high price has turned out to be well worth the years of effort. (I rarely even want pastries any more, which is just as well, considering all the problems they trigger in this body… but Epsom baths are wonderful, and berries are delicious!)

H/The difference between rest and sluggishness

There are four pillars to self-care for CRPS and, indeed, most pain diseases: activity, rest, nutrition, and distraction.

We have GOT to move. We have GOT to rest. Neither is optional. But the pain makes it hard to start moving, and once you get comfortable… oh, dear heavens, why get up when it just makes things hurt again? Initiating movement is awful at the time, but maintaining flow of blood and lymph is absolutely crucial for *ongoing* pain control and keeping the damage down.

Putting your feet up between tasks, taking it easy the day before and the day after an appointment or event, and [LINK] having good sleep habits[/] is resting. Resting is good. Resting is helpful. Resting makes you stronger.

H/The difference between doing and overdoing — and undoing

One great advantage that kids with CRPS have is parents. Parents push you when you can’t push yourself. It’s their job. I suspect that two reasons why kids have a better chance at remission is that, for one thing, they have a structured daily routine, which reduces the CNS chaos; and, for another, they have parents helping and coaching and maybe crying with them as they push through the pain to keep moving and
get their activity in, as well as their rest.

One great disadvantage that adults have is less resilience. If we overdo, our bodies go straight to Hell — go to Hell, go directly to Hell, do not pass Go, do not collect $200 (to paraphrase the game Monopoly.)

At worst, we can create a spread or an intensifying of CRPS if we push ourselves too hard, eat the wrong thing, have a procedure, break a bone. We can, by one misjudgment or accident, find ourselves far more disabled and agonized and in need than we already were. Which is unimaginable to a healthy person in the first place.

And yet, we must move… While exhibiting good judgment… With a brain that hasn’t got much judgment-juice at the best of times.

No, it’s not fair! It’s CRPS!

H/The difference between pushing and pacing

Pacing is key. Pacing is how I built up from being able to walk just 100 feet to a couple of miles. Pushing is how I got CRPS in the first place, and it’s insane to do the same thing in the hope of getting different results.

Learning how to pace, when you’re used to pushing, is relentlessly frustrating… but it *can* be done! For me, it’s usually a question of turning my stubbornness towards my own service, instead of the service of my frustration, ADD-driven fixation, or impulsiveness.

Actually, come to think of it, it’s really a question of *remembering* to do that, prioritizing accordingly, and following through on the decision. Easier said than done. This brain doesn’t have much judgment-juice, remember? It’s unspeakably weird to feel myself make the choice to stop doing whatever task I’ve gotten sucked into, realize it’s a good idea, find that I’m totally unable to make the switch, and — here’s the kicker — hear myself say in my head, “I haven’t got enough dopamine,” and simply realize I’m going to be in trouble and that’s all there is to it.

H/The difference between a bad decision, the end of life as you know it, and being dead.

Normally, only one of these is unrecoverable. Remember that. Being dead eliminates aaaaaaaaall your future options. Every last one. This is why I say, with Barrie Rosen, that *only suicide* is failure; everything else is just tactics.

Bad decisions have consequences, as we know better than most. We are often underfunded in what it takes to make those decisions, as my example in the previous section indicates. Bad decisions suck, they’re often costly, and it’s not like we can always help making them, adding a layer of humiliation that isn’t fun.

But they aren’t the end of the world. Not usually. They rarely result in our deaths. Being able to manage or mitigate the consequences and move on with a minimum of fuss is a hugely valuable skill. This brings us to our next topic.

H/The difference between being irresponsible, and forgiving yourself for a mistake.

Forgiving ourselves is key. The neurochemistry of judgment and decision-making takes heavy damage from the neurochemistry of pain *and* the particular neurological re-mapping and re-wiring of CRPS.

That’s not fair!

Would you dis someone with no legs because they couldn’t climb a mountain? No, of course not. You’d be much more likely to offer to help them get their chair up to where they can get a better view.

Between our greater likelihood of dropping a brick, so to speak, and the incredibly high price we pay for every mistake, being able to forgive ourselves is essential to keeping some perspective and keeping ourselves going.

Not forgiving ourselves actually leaves us with *less* judgment-juice (otherwise known as dopamine.) Being critical is hard work, neurologically speaking. Our brains are already overtaxed, in every possible sense of the word; do we really need to strip still more dopamine from this system and work the pain pathways even harder? Probably not, eh?

Being irresponsible boils down to surrendering your own agency. Agency, in this case, means being the active force in your own life. Whose body is it? Yours. Who is it who has this pain and all that goes with it? You. Who is responsible for learning how to manage this body? Who is it who has to find the right treatment and negotiate usefully with your providers? One guess…

Doctors spend a decade just being trained to treat this disease. We don’t have that luxury, even though we have to depend on them to get the care. Since it shows up uniquely in each one of us, we have to become our own best specialists. To quote Ojocion Ingram, a passive patient is a dead patient.

While modern conventional medicine does not take kindly to patients who drive their own care, there’s a reason for that: modern conventional medicine was not designed to create healthy patients, it was designed to create healthy profits. The system does not have your best interests at heart. It’s up to you to manage the system to serve your needs to the extent that it can… and then to find ways to stretch it a little further.

Although others may help us (and isn’t it wonderful when they do?) the final decisions are ours, for better or worse. The law still mostly respects that, if only because it shifts responsibility off the “health care” system.

H/The difference between inner wisdom and inner chaos

I recently lost a friend with CRPS who released her agency to her surgeon, for very logical reasons, but very much against her inner voice. Her voice is now silenced, and we miss her dreadfully.

This raises an interesting conundrum: with or without adequate brain-juice, we have to find ways to make decisions which can have consequences up to, and including, death. Is the logical decision the right one? Or should we listen to our inner voice, even if we can’t find logical reasons to do so? Is it inner wisdom, or yet another anxiety attack? How can we know?

I’m an old triage nurse. I used to say, always go with that inner voice. I’ve seen it be right more often than the best of doctors. There is something inside us that knows more than we can possibly perceive. Sadly, we can’t always hear it clearly, especially when our brains are hotwired and hair-triggered by the constant barrage of weirdness that CRPS creates.

The primitive parts of our brain that monitor risk and reward, hazards and fears, aversion and attraction, are all potentially infected with the disruption and misfiring that CRPS causes. It’s a central disease, so the pain it creates in the body can be reflected and echoed and magnified by the upheaval it creates in the brain. This can make it very hard to know what’s really going on, especially for the person most closely involved.

This is why coloring, meditation/contemplation, relaxation techniques, and inner arts like yoga and qi gong are so useful. They smooth out the chaotic ripples set off by the disease, so we can hear our inner voices a bit more clearly. Sadly, they’re still seen as something absurd (coloring? Really??), out of reach, exotic, or personally irrelevant. My doctors almost never mention them, and if they do, it’s usually clear that it’s something they don’t do themselves — it’s for the patients. And, as every practitioner knows, patients are just a little less than fully human.

That’s one thing I learned from working as a nurse at 6 teaching hospitals. Patients are consistently seen as less than fully human. The training in that regard goes very deep. Knowing that may make it easier to understand why things are the way they are in the modern health care system.

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Managing with one foot

CRPS tends to demineralize the bones, creating a sort of Swiss-cheese-looking osteoporosis. I’ve held that at bay so far, and I believe it relates to jumping on the vitamin D bandwagon long before I saw it in the news — I followed a tip from a friend without CRPS, who found that it kept her teeth from chipping. Well, I know why teeth chip — demineralization. So I started on the D3 at the first sign of soft teeth, years ago.

The other main thing to hold back osteoporosis is weight-bearing exercise.

I am absolutely certain that the old nursing/physiotherapy trope, “Use it or lose it,” is nearly always true.

Mind you, there are no guarantees.

Another trope: absolutist statements are always flawed.

Preferring to stack the oddds in my favor, I’ve stayed active and weightbearing despite considerable slumps, occasional backslides, and the occasional wish to throw myself off a bridge rather than mobilize.

So here I am with a broken foot, bone pain for the very first time since I got CRPS, and camping in our trailer as a diversion and a coping measure for being in between homes right now. (And that’s another looooong story.)

The second week post-fracture was interesting, as I figured out how to stay mobile. In this third week, I’ve learned that I should probably spend more time sitting down with my leg up.

Lay-people keep asking where my cast is. Casting slows healing. I have CRPS, which means my healing is already slowed considerably. Do I really need to slow it further? Hard to see an upside to that.

The point of casting is immobilization, and there are other, safer, saner ways to do that. Jamming a hard surface against a soft and variably swelling one doesn’t strike me as the best way to stabilize a small but essential bone. There’s nothing quite as rational as just leaving the darn thing COMPLETELY ALONE. Especially when even the touch of the sheet is unbearable … because, oh yeah, I’ve got CRPS.

The single biggest cause of nonhealing bones is overuse. Even I, type A-ish as I might sometimes be, can’t think of anything stupider and more wooly-headed than putting any weight or stress on a broken foot. Those are small bones with the most fundamental job in the whole skeleton. When they go wrong, it’s not good!

At first, I didn’t even put a sock on it — just a light lady’s scarf at times (a gift from a healer friend), gently wrapped around to keep the breeze off — or, as I thought of it, the burning blast from hell.
mismatched_sox
Recently, I graduated to a loose, bright red fleece sleeve with the end stapled shut (breeze…) Now that the swelling is down enough, I can wear the “walking” (no, that’s not a sensible suggestion) shoe…
Red fleece sleeve slid over foot and lower leg. Walking shoe on.
… to minimize the effects of the occasional little bumps and jostles the foot gets as I dart around on my stunning little knee-walker.
scooterfreesme
I can’t use the knee-walker in the trailer, too close to the car, on rough terrain, or when the bruising on my shin gets too bad. So the moves I developed in my first week are getting more refined.

Major problem… Despite an eating pattern averaging 1,450 kcal a day of steamed greens, lean protein, and highest-quality fats, I weigh 200 pounds (90 kg.) So,

  • every time I lever myself up from the floor on one foot .. that’s 200 pounds going through one knee bent double, on a frame designed for less than 150.
  • Every time I hop, even in my scoop-bottomed sneakers, that’s 200# — plus velocity — landing on that leg each time.
  • I do my best to control my velocity and distribute the load through the whole spring-structure of the leg, but … 200 pounds. I thought my Achilles tendon was going to pop off my heel yesterday.
  • Every time I brace myself with my hands on a rail or counter as I swing or scoot along, that’s 3 digits of poundage on my CRPS’d carpal tunnels.
  • And then there’s getting in or out of the trailer I’m living in, with its two and a half foot rise… makes me feel faint to think of it.

It’s kind of unreal that my body has held it together for so long. But hey, like I’ve said, a lot of us find that we are capable of far more than the science might think.

The t’ai chi is invaluable. It’s all about the curves. Everything, in the end, is embodied in the swooping lines of the taiji symbol.
Yin_yang-sm
I can get a lot more leverage than should be humanly possible out of a curving or looping wave of my hand — a Roll-sideways rather than Roll-back, for my fellow t’ai chi-kans.

I propel myself from the ground up onto my foot by sending energy down from my back in a spiral into the floor, and letting that “imaginary” spring push me up. Go Dragon!

I settle onto the toilet while keeping one foot aloft by using a really cool sort of 3-D scissor-swoop with my two arms — Part Wild Horse’s Mane, but with less tilting and more curve.

The pain is, well, beyond words, so let’s pass on. The level of dependency is, for me, even worse. The hardest part of all, though, was giving up chocolate. It interferes with calcium absorption. I did say about not slowing healing, right?
choco-giving-it-up
I’m grateful beyond words for the t’ai chi moves. They save me, in a very physical, literal sense.

While we may find, in impossible situations, that we are a little superhuman, it isn’t good that we have to do these things. It isn’t healthy. In fact, it’s all rather ghastly from the first-person standpoint, however much it seems to inspire outsiders. In short, it sucks. And we suck it up. Then move on.

Swoopingly, if we know how.
I think I’m halfway to Bagua Zhang by now.

But it’s all related.

I wish I were an animator. I have these ideas in mind of a cartoon character who wiggles where I do, and not only could I make the character bounce and thud and stagger and scoot like I do, but I could animate wa-wa-ing waves and oscillating ropes of pain in morphing colors for each move. It’s really rather elegant, as well as side-splittingly funny in a greusome way. At the same time, extremely informative. Extremely.

Hmmm.. I guess I’ll download and learn some suitable animation software. In between the fractures, fallouts, fall-throughs, snafus, and the dribbling detritus of a slightly ridiculous life.

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Autobiographita

I heard from a lovely friend of my youth, who wanted to know what I’ve been doing since Egypt. I tried to tell her. I realized that, embedded in my nutshell autobiography, were a lot of clues about why I blog and why I approach CRPS and its ghastly little friends with this sort of incisive determination seasoned with a laugh, a sort of functional contempt — an attitude of, “not going to let such a nasty little mindless rat-fink take any more of my life than required.” It goes way back. So here’s a little background…

I was born in Ankara, Turkey, though I nearly wasn’t born at all. My mother started bleeding well into her pregnancy. The protocol at the time was to get care from the Army base near Ankara. The Army doctor told her, “The baby’s dead. Come back on Monday and we’ll have it out.” Which, if it were true, would have killed my mother… but she didn’t think the baby was dead.

She asked around and found a Turkish doctor (her Turkish was pretty good) and he said, “The baby’s not dead, but you’re going to bed and will stay there until it’s born.” (She spent her time reading, smoking, and knitting, so I have something to blame for the asthma. I think it was all that knitting. The sweater made its way all the way down three children intact, so it was some very good knitting, but still… )

block image of a toddler's read sweater
A few months later, the wonderful Turkish doctor strolled into my mother’s hospital room, threw open the blinds, and said in Turkish, “A new day, a new baby!”
children-Versailles_petit_appartement_de_la_reine_web
As we left Turkey 3 years later, me toddling along with my little stuffie in one hand and my mother’s hand in the other, my older brother charging ahead of my Dad who was carrying the bags, and my younger brother a babe in arms, my mom was stopped on our way to the gate. It was the nurse from the Army hospital. She said, ever so kindly, “Oh Mrs. Aweigh, I remembered that you’d lost a baby. I’ve thought of you often, and I just wanted to know that you’re all right, now.”

My mother was very touched, but she had a plane to catch. She looked at me, looked at the nurse, looked at me, looked at the nurse, and said, as nicely as she could manage, “I’m fine, thank you,” then caught up with the rest of her family.

We survived 7 years Stateside, and left for Egypt in January of 1976. I consider that to be my humanization, as I never felt at home in New Jersey. That could come off as a cheap shot, but it’s the simple truth. I was all wrong there.

Cairo was a dream come true, only I never could have imagined being somewhere so rich — rich in history, rich in culture, rich in the textures of language, rich in feeling. I had finally come home.

I also discovered healing, taking in whatever sick or injured animals came my way and figuring out how to help them — kittens, pups, birds both wild and tame… I’d have gotten a donkey, if the neighbors would have let me.

Very young white donkey grazing cutely under palm trees.
This little colt is nearly as cute as the one I had my heart set on.

I was a dependent, however, and we weren’t allowed to stay in one place for more than two “tours”, totaling four and a half years. My folks went to Bangladesh, and my older brother and I went to high school in Massachusetts.

I was in rural Western Massachusetts, a slice of heaven on earth, especially if you grew up in a desert.

I wound up starting at a Seven Sisters college there. Left the ivory tower when school was interfering with my education (thus neatly acquiring the black sheepskin from my disreputable older brother, who had meanwhile cleaned up his act and gone to law school.)

I became a registered nurse after surviving a sailing trip from Cape Cod to the US Virgin Islands, taking the deep-water route outside Bermuda. The captain was a drug-addicted control freak and sexually inappropriate — none of which became apparent until we were signed on and nearly underweigh. (Now, I’d run anyway, and let her lawyers try and find me. I was younger then.)

She had been an ivory tower classmate of mine, an older student who had been locked up for most of her youth for being gay. She probably was perfectly sane to start with, but after being thrown off by parents and socialized in a nut house, nobody stands a chance. However, she was in her 30’s and living as an adult, so it was not ok.

Side note: queer people are somehow expected to be better than straight people, but that’s just unfair. People are people. Some straight people are really decent. Some queer people are really awful. And vice versa! Just let everyone be human, okay? Rant over.

Due to the intolerable hostility and tension aboard the boat, the nicest member of the crew developed a stomach ulcer, which hemmorhaged… so I started my first IV on the high seas and we had a day-long wait for the helicopter to air lift her. Why? Because the drug-addicted captain had plotted us as being about 80 miles landward of our actual position.

That bleeding ulcer saved us all!

We got safely to anchor in Tortola a few days later.
Panoramic view of Road Town harbor in the tropics
After a screaming row with the captain at 1 am over something irrelevant and stupid (not danger, not losing the dinghy, not being hit on, not being verbally abused day in and day out, but something totally stupid and irrelevant), I was kicked off the boat in a foreign country, with $5 and a tube of toothpaste in my pocket — which exploded as I lay sleeping on a picnic table at Pusser’s Landing, halving my resources and adding a mess.

My dad was posted to Jamaica at the time. I was allowed back on the boat to get my things and call him and arrange for my extrication. Nothing happened on weekends on the Islands in the late 1980’s, so I wound up being the house-guest of a truly kind and decent Island couple, who took in penniless waifs and strays simply in order to make the world a better place. I’m everlastingly grateful to Marina and Samuel. May all good things come to them.

After that, nursing school was a stroll.

I supported myself by tutoring in the school and splitting and hauling cordwood in the forest. However, between the time I started and the time I graduated, the economy in Massachusetts crashed, so I headed to Washington DC, where my State Department-associated family members and friends roosted.

My first nursing job was on an HIV unit, until it closed when visitors realized that most people there had, my goodness, HIV. (Sigh…) My second job was at DC General Emergency Dept, the only public hospital in one of the roughest cities in the country at the time. I learned a LOT.

I found my way back to rural Massachusetts, once I had the resume to get a good job in a lean market. I had first learned about herbs and energy healing there, and treated my illnesses and injuries with no health insurance from the time I left college through nearly all of my nursing career. (How ironic is it that it was so hard to get health insurance when I was a nurse?) I also took care of a couple of “incurable” things that patients of mine had, and cured them. I became a good empiricist. Home care nurses HAVE to get results, because there’s no backup.

Scientific-method science is very sound when it’s properly applied, but money and access distorts it too easily. Empirical-method science is the only kind that can actually tell you what works in the case of the individual.
While I prefer to understand how things work, I really only care WHETHER they work in a given case. I’m also well aware that, in medicine, at every point in history, we always think we know a lot — but, 10 or 20 or 100 years later, we look like idiots.

My favorite Star Trek clip of all time sums it up well:

A few years later, as the economy softened again and all but the worst jobs dried up, I allowed myself to be drawn to California by a nice face — which ditched me once we arrived. Not so nice.

I worked as a nurse and made my home in Central California until my immune system gave out, for no discernible reason. Shortly after the immune system pooped, my dad died, preventably (CPR would have clearly saved him, but he was in Egypt and swimming alone) and that was the final straw. Well, the penultimate straw…. Afterwards, my lungs shut down and my doctor was out of ideas. I’m pretty sure that acupuncture saved my life, because nothing else worked.
Acupuncture_chart_300px
Once I was well enough to do some career research and put together a portfolio, I was hired to document programming software, starting with an internship on the basis of the raw talent my supervisor saw in my work. I was quickly hired out of the internship. They had an onsite gym, and one of the loveliest running trails through the redwoods was right on my way to work, so I got into outstanding shape …

…And then the repetitive stress injuries hit.

A couple of surgeries later, with odd complications, I developed a horrific central AND peripheral nervous system disorder called Complex Regional Pain Syndrome, or CRPS. It took from 2001 to 2005 to get diagnosed, then fighting until 2012 to get disability dole (SSDI) and get worker’s compensation insurance off my back. (Call it another 3 near-death experiences. They so badly wanted me to just die, it was stunning to see what they’d do to try to effect that, short of hiring a hit man.) This gave me a lot of insight into the approaching-3rd-world status of US health care and its social administration.

The U.S. spends twice as much on care as other "civilized" countries, and turns out the worst outcomes of all. Tell me how an insurance-driven, corporate-owned system is efficient and economical, again? Because that's not what the data show.
The U.S. spends twice as much on care as other “civilized” countries, and turns out the worst outcomes of all. Tell me how an insurance-driven, corporate-owned system is efficient and economical, again? Because that’s not what the data show. This link takes you to the full story.

The nursing background and the information-architecture and explanatory experience have formed my current career, the (currently unpaid, but highly useful) job of explicating CRPS, its mechanisms and management, and how I adapt my world to function, in spite one of the most invisibly crippling diseases known to science.

I’ve been trying to think how to turn the plot arc of this life into a nice, suitable-for-polite-company little anecdote, but I broke my foot in my one non-affected limb last Friday (I am laughing with heartfelt irony as I write this) and am hugely motivated to simplify. For me, simplicity is most congruent with honesty and straightforwardness — less to remember. So I just spat it out.

This might explain a few things, among them my fascination with health and medical science, my very wide view of healing (belief is irrelevant; what matters is if it works for you), and why I have zero to negative patience for the arrogantly overeducated — they’ve nearly killed me a few too many times. Right from the start!

"Visis mu! Visis mu! This is a truly excellent mouse which I am shoving smugly up your spine!"

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The Bean Dip Response, companion to the Spoon Theory

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

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

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

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

Here’s my version…

Health Management Choices – Boundaries

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Chronic patients often struggle with this.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Living without hope – tasks and aftereffects

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

They really had trouble with that.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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