Getting re-humanized by phenylalanine

After breaking my own heart just before the holidays, and then lots of traveling and the sheer delight of swimming in the ocean of love I felt with my kin (lucky me!), and then coming back in once piece, and then a bumpy recovery period… my dopamine was pooped.

How do I know that? Simple. I lost touch with the usually easy-flowing sense of love for my nearest and dearest. I was not quite as interested in grabbing good moments to have some fun; I was drawn to sitting around, disaffected and lethargic. My mind was a bit fuzzy. It was pretty much impossible to control my impulses to buy things I didn’t need, but felt a need for right at the moment.

Dopamine (among other things) is used to make decisions, control impulses, get interested in things, be motivated, and feel the pull of love or other desires.

I experimented years ago with precursors to neurotransmitters, because I was having a hard time convincing doctors that addressing the neurochemical impact of the disease might lessen the neurological effects of the disease.

Line drawing of brain, including medulla, sliced near the middle so the lacunae are visible.

 

I know, crazy stuff. Such a weirdo.

mirror_neuron

I’m taking an SNRI which mostly does a good job, but I’ve been doing this long enough that I don’t want to crank up the meds as my first line of action. Meds are problematic, especially for me, so I keep them as a second or third line option, starting with less toxic options first.

I’ve learned that the meds need something to work on. Selective reuptake inhibitors basically affect the molecules that already exist; they can’t make new molecules of serotonin, or norepinephrine, or whatever; they can only push the ones that already exist to work harder.

I like to make sure my reuptake inhibitors have something to work on, rather than just squeezing the last of the juice out of what few molecules are there. I still trust my body to make the neurotransmitters if they have the raw materials, so I listen to my cravings and supplement accordingly, giving them the raw materials to make more neurotransmitters.

Craving starch and fat and sugar is a good indicator that I need more serotonin, so I add 5-HTP to give myself a solid, measured dose of serotonin precursor. Craving sugar and having protein quench the urge, is usually a good hint that I need more dopamine, so I take some nice clean d,l phenylalanine.

Wide-eyed kitten staring at a roast chicken on table in front of its face

(Your mileage may vary, of course, but it turned out there was good, straightforward science behind these two simple self-checks.)

These are only two out of dozens of neurotransmitters, but they interrelate and often morph into each other sooner or later. So far, I’ve had good results with focusing on these two as the lynchpins of my neurochemical management.

Here’s a metaphor that parallels the relationship between neurotransmitter meds and neurotransmitter precursors. You can crank up the volume all you want, but if there’s nothing in the CD/MP3 player, most of what you’ll get is just noise. Precursors are the music media. Meds can be the volume control.

I stopped taking d,l phenylalanine a couple months ago because I was doing great and really wanted to reduce the number of capsules I have to choke down. For awhile, I thought things were fine, but I’m not sure they actually were… I made some very silly decisions.

Phenylalanine, found in processed (smoked or dried) meats and well-aged cheese, as well as in certain artificially-sweetened drinks, is a key precursor for the dopamine/norepinephrine set of neurotransmitters. It has been found to suppress pain at the spinal root, too. It’s used by some vets to help advanced arthritic pain in dogs.

Line drawing of spine in a human frame.
The spinal root comes out between the vertebrae. Most pain nerves in the body lead to a spinal root, and the spinal root goes into the spinal cord. The spinal cord is part of your central nervous system and goes straight to your brain. This explains a lot about CRPS, and other things.

My early experiments, when my neuro situation was getting bad, showed that 4 packets a day of that phenylalanine-rich artificial sweetener helped my mood and my pain noticeably. This persuaded my (slightly bemused) doctor to try me on SNRIs. Once I got onto the right SNRI, I’m happy to say I could get off the crazy chemical-sweetener version of the molecule. Suddenly the artificial sweetener stopped tasting good!

Anyway, to make a long story short (“Too late!”), I keep d,l phenylalanine on hand in case I need it for pain or brain. I started taking it a few days ago, in the morning, and I’m finally starting — starting! — to feel more human again. I started at a low-moderate dose, and gave it a few days to work its way in before reassessing.

I understand that many people shy away from these precursor supplements because medical conservatives don’t trust their patients to pay attention and notice what makes things better or what makes things worse. That’s often reasonable… when I was working as a nurse, 90% of my patients probably couldn’t tell if their feet were on fire without looking first. Most people are really dissociated from our bodies.

Moreover, pain patients have every reason to be! When you spend most of your time in some degree of agony, it takes nerve, practice, and stubbornness to check in on yourself and make note of what you find, in order to screen out or screen in things that might be harming and helping. I have to say, I have found it well worth the effort, overall.

Also, surprisingly, it makes the pain less oppressive to look it straight in the eye once in awhile and say, “I see you. I see exactly what, and where, you are. You don’t fool me. You are not my life. You are not my body or brain. You’re just something that gets in the way, and I can usually work around you to some degree.”

Now, here is the “caveat” part.

It is possible to over-crank your meds by cranking up the precursors; it is possible to generate too much serotonin or too much dopamine by taking too much in the way of purified precursors, and your meds will keep squeezing the most out of that excess. So yes, you need to be careful and pay attention if you’re going to try this. Don’t jump in blindly. Take some time to study up.

This is where your own research and self-awareness becomes pivotal. What will that look like? How will you handle it?

My first experience of serotonin syndrome came from an iatrogenic overdose of an SSRI. That was bad. But hey, I sure know what it feels like now! I back off on the precursor or med when I feel the slightest drift that way.

Personally, I normally cut back on the meds first, because they contribute more to the fogginess and confusion that makes life so sucky sometimes. This is how I handle it, because I am comfortable doing things like filing or nipping a bit off my pills to cut the dose down, and I know my body well enough to notice the effects.

Using these supplements appropriately — with all this awareness and empirical experiments on myself and so forth — has reduced the side effects from my meds while giving me much better pain control and a much pleasanter quality of life. That’s a huge benefit. Huge. Definitely worth the effort.

If you’re interested in doing this… be sure to research the possibilities; understand what the sources, benefits, and drawbacks can be; and learn to track your symptoms. When you feel comfortable trusting your mind to your knowledge and record-keeping skills, then experiment carefully to see what works for you.

I’m not going to patronize my readers by telling them not to take responsibility for their bodies and their knowledge base, but I’ll gladly remind you — as I’ve recently reminded myself — to keep paying attention. Whatever mistakes you make are as much yours to deal with, as your successes are yours to celebrate. I wish you all success.

Naturally, it’s a good idea to start small and work up until you notice an effect. These things rarely work instantly, so give it a few days in your system until you bump the dose up.

Just as with meds, go with M.E.D.: Minimum Effective Dose.

If you don’t know your body pretty well, it can be hard to figure out what deficiency or excess you’re dealing with. Most online definitions of these syndromes or toxicities discuss the extreme and life-threatening levels of toxicity, which are not helpful to those of us who are working out our supplementation and medication levels.

When I had serotonin syndrome, I simply didn’t care if I had anything to eat or if my laundry — or my body — got washed. Nothing mattered. The peace was outstanding, but the situation was not compatible with long-term survival. I didn’t have tachycardia, myoclonus, or tremors, and I only noticed my reactions were twitchy when my doctor did the knee-hammer thing.

This non-disastrous level of reaction matters, because this is where we have the chance to tune our levels and make our lives better instead of worse.

I took years to get to know my body’s reactions, knowing the time would pass anyway and I might as well be wiser for it. So I learned to be mindful and careful, pay attention to myself and my body’s signals, and do my homework on the foods and nutritional supplements I wanted to try. Everything has to make sense to me before I try it.

I don’t much care if a bunch of overpaid idiots agree. I care what works for me.

Currently, I’m on 500 mg a day and am noticing an improvement, although it’s a rather slow one. I now have a theory that my body can cache something in the chain between phenylalanine and dopamine, and the important thing to do is not to let that cache get too depleted. Once I’m back up to par, I may not need it all the time, but I need it often enough to keep my “backstock” up to par. Progress!

I’m going to go from once daily to twice daily on this phenylalanine, and once I get back to a tolerable baseline, go back down to once daily and stick to that at least through the winter. Then I’ll reassess, yet again, as I normally do every 6 months or so, and consider going down to every other day or so.

One thing you’ll discover in your research is why I use the d,l form of phenylalanine. Go on, check it out 🙂

Re-assessing meds and supplements a couple of times a year is just part of life now. Things change and I want to keep up! I can usually find an intelligent pharmacist to talk things over with, and those decades of tracking what happens to my body and mind serve me well when it’s time to fiddle my supplements, so I can take as little as possible for the best effect.

It would be all too easy to take dozens of supplements, because this set of diseases wears so hard on the body’s systems, from the intracellular organelles to the organs themselves — not to mention the nerves and circulation connecting it all. But that has its own pitfalls, in addition to the staggering expense. I stick to what works for me, and try to stay current on the theory of other things so I can give meaningful suggestions when people ask. Other people’s bodies are different from mine, and what works for one may be no good to another; we all have to be our own, not mad scientists, but sane ones… an interesting challenge at the best of times.

Wishing you the best of the new year. I hope it’s good to you.

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Isy’s Pocket Guide to Managing CRPS Naturally

Is it possible to manage CRPS without drugs?

I tell you from personal experience, it takes time and study and a lot of experimenting, but many have done it and I did for years.

I found that nutrition, activity/rest, and mental hygiene were the Magic Triumvirate.

Nutrition has a huge effect on what happens in our cells.

Activity re-regulates the whole CNS, while our bodies require rest and pacing to let the activity happen.

Mental hygeine encompasses meditation (sitting, yoga, tai chi, qi gong, relaxation exercises), cognitive behavioral tools (such as noticing tense postures and re-grounding and releasing them, playing chamber music or soft rock or soft jazz to calm the brain down, using lenses and mirrors to remap the brain’s crazy ideas about our bodies, biofeedback), and the art of distraction (absorbing books/shows, phone calls with friends, coloring abstract designs, doing something you enjoy, doing something productive for the neurotransmitter-boosting pat on the back you give yourself for doing it)…. all very important and useful stuff.

Learning to plug all this into daily life is a monumental task and it takes time to learn what YOU need to do, but the time will pass anyway and crps is still a full-time gig anyway, so you might as well be healthier and bether informed.

If you don’t mind one strenuous suggestion: before you take out anything, be sure you’ve plugged in something else that already helps. So, for instance, I got healthy fats (for neuroprotection) on board before I cut additives and phosphoric acid out of my diet. Those substances are neurologically addictive (“have a cola and a smile!”) and I knew from seeing people deprived of preservatives and sodas suddenly, that there’d be an unhappy withdrawal period. Once I had the coconut oil for cooking veggies, the grass-fed butter, and the olive oil & avocados going, I hardly noticed the change and didn’t even want colas or packaged food after a few weeks.

Again from experience, I suggest a combination of liver cleansing food (parsley, milk thistle, avocado hearts, dandelion, cilantro) and phosphorus-rich food (lecithin especially, mixed nuts) to calm the shift off of medications.

The liver uses phosphorus to process meds, in a process called (not surprisingly) phosphorylation. Providing plenty of raw material for phosphorylation really smoothes out medication issues for me. Lecithin has a mild, slightly buttery taste, the granules are easy to clean up after, and it makes fats (neuroprotection, remember) a lot easier on my sulky digestion.

Also tons of water, seltzer, whatever fluids you can get in. Most modern human central nervous systems are chronically dehydrated, which makes crap build up and that increases inflammatory response and pain. The bathroom breaks are time well spent: I need to get up and move a little anyway.

I blog some of my stuff here at livinganyway.com. I also recommend www.tamingthebeast.ca since she manages mast cell disease (massive drug allergies) on top of crps.

I use lemon balm (Melissa officinalis) extract for flares, and it is great for nerve inflammation. It’s been used for shingles and cold sores for millenia.

Clove oil — well diluted! — is outstanding for nerve pain.

Emu oil is good for almost every kind of pain, and absorbs amazingly. I use it by the drop, it’s so effective, and I add a bit of clove oil for good measure.

I’d add st johns wort oil as well, if I had any, because it does something remarkable to neurotransmission that smoothes out the pain.

I take neurotransmitter precursors twice daily, and they’ve been found to suppress pain signals at the spinal nerve root: 5-HTP and D,L Phenylalanine.

I also take st johns wort. I used to use it instead of neurotransmitter meds like SSRIs, SNRIs, tricyclics, etc, but now I take it alongside and I find I get better results with fewer side effects.

Epsom salt baths help with flares, pain, dysautonomia, all kinds of yuckiness. I have to be up to a bath, but when I am, it’s wonderful.

I stick to whole foods with almost no grains, healthy fats and oils, quality meat and eggs daily but not hugely, starch from root veg and stalks. I have to hit the roadside stands, membership stores, and offbrand markets, because this stuff costs rather a lot in the supermarket, but this is a great area for organic and whole food.

I did without meds for years and I’m glad I did. For someone who’s had this disease, with several complications, for 15 years, I’m in phenomenally good shape. Now I take a wee bit of an SSRI and an SNRI, and antihistamines to manage my own mast cell histrionics, and with everything together, my pain is roughly 90% managed, sensory sensitivity is down to a functional level, stamina allows me to be up for most of the day, and my dysautonomia probably 50% managed. Sadly, still not enough for a job or much of a social life, but, fortunately, I did finally get disability income and many of my friends are able to come to me 🙂

Life is good.

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Pacing, from the outside for a change

Now that I’m writing more, I find (again) that I don’t always know if I’m writing a blog post or journal entry until after the fact. (When I’m in practice, I always know ahead of time.) Naturally, the blog posts go here, and the journal entries don’t, so this is only visible at my end. However, I’m getting more journaling done, and that’s definitely good for my brain!

My partner J is learning to pace himself. He’s bit older than I am, is a bit hyperactive, and has had outrageously good health all his life. The onset of, um, late middle age is coming as a rather shocking surprise to someone whose body seemed to hold its position from 25 to 55 … and then it only took a decade or so for him to have some peace and wisdom around the fact that it’s time to act with more peace and wisdom.

Of course, in his case, he first had to find a place where acting with peace and wisdom was a survival path, rather than an invitation to younger predators.

Etching of elephant in distance, man taking aim at elephant with rifle, another man preparing to stab the man with rifle.
Life in J’s old neighborhood. Img from Wikimedia Commons.

I used to think that it didn’t much matter where I lived, that people were people and that things would work out much the same nonetheless. Boy, have I ever changed my mind about that. Some places are nice to visit, but I wouldn’t want to live there.

Back here in the North Beast, the cold snap has us both moving slowly. We’re about 2/3 done with sanding the driveway, and will take a couple days to rest until the next push on that task. It’s good to sit here in the living room all cozy and peaceful, because he’s now comfortable with doing things in episodes.

Pacing is a tough thing to learn, but it’s nice once you get it. It’s easier on those around you, too. Who knew? I never thought of that before, until I was one of those hanging around a person who paced himself successfully.

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

We are warm, safe, housed, fed, loved, and cherished. For all the years that none of that was true for either of us, well, we never knew this was up ahead. We had to stay alive long enough to get to this point. It wasn’t easy. I’m glad we did.

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Living anyway

I was holding off on blogging consistently until my brain was more consistently reliable — until I had enough improvement in my mental faculties. Reason intervened, and it got through the concrete that, longstanding CRPS being what it is, that could be a very long wait. Those of you looking for solid whacks of brilliance or coherence or good judgment, consider yourselves warned. This is real life, and, whatever is left of it, it’s time to live it anyway.
Snowy lawn, apple tree, row of pines behind apple tree, snowy road visible between trees, silvery cloudy sky above trees.
And, with that said, 2015 is left in the dust.

Waiting for perfection is obviously absurd. Anything with a pulse is still imperfect. Waiting for “enough improvement” is the mental sucker-punch that hides in perfection’s shadow. It cajoles me by not being perfect, but … define “enough improvement.” — See what I mean? Mental sucker-punch!

My tea, like me, is a work in progress at the moment. I sit here letting it steep, with my patches of exposed skin singing “zippity do dah!” every time something touches them, the silver and white day rising gently through my window, my insides solidly blocking the thought of food or pills for the foreseeable future (we’ll have to negotiate that later), J coming over to hug me against his side and give a pleased giggle that we’re reallly here and really together and we made it this far, and I find a perfect moment in it.

Living anyway. That’s the point. Well done, Isy.

Happy New Year.
May your hardships be balanced by your blessings.
May your love drown your pain.
For the many of us who live unbearable lives, may you have all the courage and wit and calm to bear it and find your moments of freedom.
Whatever you’ve got to live with, live anyway, and find the peace and joy there is even in the event horizon.
My heart is with 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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// consider splitting into 2 or 3
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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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A simple 3-step program for bearing the unbearable

It’s been an interesting summer. It’s good to be safe and well. And that’s all I want to say about it right now. On to more interesting things.

Those of us who have to bear the unbearable eventually learn that there’s no trick to it, no shortcuts, no secret wisdom. I’m sorry to say it, but there isn’t. It’s very simple — not easy, but simple.

There are just three things we have to do:

1. Keep breathing.
2. Put one foot in front of the other.
3. Keep going through the motions until we adapt to the New Normal.

That seems a bit telegraphic. Let me expand on these a little:

  1. Keep breathing.

    If we don’t do that, we’ve got nothing. Literally. Keep breathing. In fact, the better we breathe, the better we cope. (There’s a ton of science on this, if you care about that.) For those who need reminding how, try this:

    1. Ease your lower back, if you can. Gently drop your shoulders, which are probably up near your ears.
       
    2. Breathe in through your nose, if you can; if you can’t, stick your tongue out loosely between your open jaws and breathe through your mouth. (This opens the back of your throat — and releases clenched teeth.) Imagine the breath going down in front of your spine and into the bowl of your pelvis. This helps draw it in deeper, which is key to calming and strengthening your system.
       
    3. Breathe out naturally, or by gently exhaling through pursed lips — like blowing out a little candle. The pursed-lips one is great for tense moments and higher pain.

    Breathing well disrupts the “anxious/fight/flight” loop in the nervous system. It’s amazing. So simple, can’t beat the price, and no bad side-effects!

  2. Put one foot in front of the other.
     
    This means doing the work of survival:

    1. Do what it takes to get fresh air, water, food, clothing, and shelter, plus a phone and internet access. (In this isolated and far-flung age, phone and internet are essential elements of survival.) The safer and more effective, the better, but we can’t always be choosy.
       
    2. Keep our bills paid, if we can. If we can’t, find out how to get assistance with them. (This is one task where we need the phone and internet.)
       
    3. Put the minimum effective effort into maintaining our relationships. (More phone and internet.) We need to know who won’t fade away at the first real sign of trouble. We can’t expect much, though — a sad fact of life. Just stay in touch and see what happens.

      One way or another, we do find out who our real friends are.

  3. Keep going through the motions until we adapt to the New Normal.

    What that involves varies for each of us; you’ll know it when you see it starting to happen. Things you’ll probably notice include:

    • The work of survival shifts from “minimum survival” to meeting slightly higher expectations.
       
    • New relationships have begun to form, and old bonds to re-form, around the new realities.
       
    • The inevitable grief over what we’ve lost (abilities, opportunities, friends, and so on) begins to separate from the general mash of misery.

That’s actually a good sign.

When grief becomes distinct, it makes room for other things — relief, moments of joy, feelings of love, appreciation for what we now have.

If we keep breathing well, we can notice those other things better, and get closer to that quality of “radical acceptance” (which can work with or without hope) that makes even hellacious lives so much richer.

When in doubt, breathe. Then just go through the steps.

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Story: Shasta suggests a dog

This is another story improvised on the fly. One solution to boredom, when my studying-brain won’t work: I send it wandering, and it brings back souvenirs. I find that these mental excursions strengthen my mind and my focus when my studying-brain does work. (Jung might have been onto something, there.) It’s also very satisfying to feel capable of nothing, yet still produce something. I mean, wow, how cool is that?

Enjoy.

Shasta suggests a dog

Dark wings overhead. Are they angled up in a V, or flat across? Flat. Oh. Time to get the kids in.

She ran back towards the house, waving and barking. “Eagle! Eagle!” she snarled, when she was close enough to be understood.

Denny reacted quickly. He extended one gangly arm and snapped open two gates so that the pasture led straight into the barn. Then he followed Shasta, who had raced back up the pasture and was getting around behind the herd, shepherding them in. Danny called out the goats’ supper-call, but the goats didn’t take that well. They knew it wasn’t anywhere near suppertime!

Shasta‘s more direct approach got them going. She hustled and hassled the goats, coaxing here and pushing there, taking attitude from the harder-headed nannies and dishing it out in return. Fortunately, the billy was a lamb. Figuratively speaking.

Making soothing noises, Denny stood near the gate and persuaded the disgruntled herbivores, despite their complaining and nagging, to shuffle along and take a break in the barn.

Shasta sneezed after the last little goat, making it skip, jump up, and bounce off its mother’s side. Or, at least, giving it an excuse to.

Denny swung the barn door shut and sighed. The goats farted and burped, some of them eating their breakfast for lunch, settling in to hurry up and wait.

“So now we’ve got eagles,” Denny said. “I thought the hawks had that niche filled.”

“That pair of red-tails didn’t come back last year, and I saw a peregrine in the road yesterday,” Shasta muttered. “And now there’s baby goat,” she sighed.

Denny shrugged and walked back to the cabin. Shasta shuffled after, looking back moodily now and then.

“C’mon, old girl, let’s go in and have a cup of coffee.”

Coffee made and distributed, Denny sat down hard with a woof. Shasta flopped on the rug.

“I don’t know what to do about eagles,” Denny fretted.

Shasta blinked agreement.

There was a long silence.

“I know what,” said Shasta, pushing up on her hands. “Let’s get a dog.”

Denny looked at her with light slowly dawning. “You’ve got that friend,” he started.

Who breeds kuvasch,” Shasta finished.

Denny sank down, cross-quartering the idea for feasibility.

“Let’s call,” she said. “It can’t hurt to ask about it.”

Denny’s face didn’t change, but something in the air smelled of masculine resistance to asking.

“I’ll call,” Shasta rephrased. “Time I caught up with him anyway.”

She came back with a bag of peanuts and a grin. “He’s moving and has one pup left from the last litter,” she said, “so we get a deal, if it works out. We need the right kind of dog, because most of them don’t look up. Not normally. Not unless they’ve got a really tall owner, I guess. Kuvasch are enormous, and they’ll take on anything that attacks their flock, up, down, or sideways. They’re left in charge of herds for months at a time, they’re that good. We get to meet the puppy and try each other on, but in two weeks he’ll be gone, so he’s kind of on the fence about it.”

That was a long speech from Shasta.

Once Denny recovered from the verbosity, he gave his head a little shake and said, “He’s on the fence about it? What does that mean? Doesn’t he want to get rid of the dog?”

Shasta offered him the peanuts. “He’s a breeder. A real one. It’s not about unloading the dogs for a profit, it’s about spreading the kuvasch love and covering his expenses.” She chewed thoughtfully. “These are good peanuts,” she remarked. “Fresh.”

She examined the label while Denny absorbed that.

“Okay, so what’s so special about kuvasches?” he asked, making it an honest question, not snarking.

Shasta passed him her smart phone, with a search on “kuvasch” already done. “In rural Turkey, my parents had trouble finding childcare for me and my little brother. They were going to get a kuvasch, but then the neighbor’s sister came home from a bad marriage, and she became our nanny instead.” She shrugged. “Worked out for everyone. The dog was considered a reasonable solution, though.”

They went to meet the puppy three days later. He would scarcely even acknowledge Shasta‘s presence.

Half an hour later, after Denny had escorted a shell-shocked Shasta to the car and helped her to sit, he just sat and looked at her for a long moment.

Finally, she said, “He wouldn’t even look at me.” She turned to Denny. “How could he not even look at me? Dogs love me.” She turned away, sinking her chin. “I love dogs. Even that one, the rotten ratfink little bastidge.” She shook her head, tears trickling beside her nose. “I love dogs. I never met a dog who didn’t like me. I don’t understand.”

Worse still, in Denny’s mind, was the increasingly suspicious looks cast at Shasta by the breeder. Some friend. Even now, he was peering through the blinds, as Shasta wept over his churlish pup. (The sire and dam had been delighted with her, within the cat-like restraint typical of the breed. Only the pup had snubbed her.)

Denny gave up the pat-pat-there-there routine, cast a look of good riddance at the tacky suburban front of the breeder’s house, and drove off.

He was keeping his thoughts to himself, but they weren’t nice ones. He didn’t realize he was muttering nasty things under his breath, imagining the conversation he would have *liked* to have with the supercilious breeder.

Shasta noticed. She poked him.

He turned to her. “What is it?”

“You’re mutt–“

Denny checked the road just in time, swerved, ran the car off the road and stopped after several vaulting leaps over curbs, hummocks and undergrowth.

The car went pink-pink-pink. Denny and Shasta looked at each other with big eyes. Then they unbelted, cursed a bit as they got their feet under them, and tottered shakily back up to the road.

Yup. There was a green gym bag in the middle of the lane. And it was wiggling and whining.

Later, back at the cabin, Shasta, who was having the most talkative day of her adult life, puzzled some more. “Who would abandon such a beautiful pup?” She was on the rug with their new find, or new friend, stroking the drizzle of white that ran from nose to tummy through the short black fur. “She can’t be more than a few months old.”

The youngster looked at her worshippingly, as Shasta‘s hand traced the white drizzle again.

The next day, at the vet, Denny asked if the vet could identify the dog.

“Well, pit bull of some kind, I’d guess a thinking breed rather than a musclehead like most of them are.” The vet looked at the dog with her head cocked on one side, her fabulously chic lopsided fade blending up into a gorgeous cap of kinky curls. She was the sharpest vet for hundreds of miles, and even though she looked out of place in the country, there was something in her air — like the way she cocked her head — that made it impossible not to feel you’d found a good ally in troubled times.

“Hang on,” she said. “I’ll see if there’s a chip.”

There was.

“I have to look it up,” she said, clearly rather sorry.

Denny nodded.

She rattled at the keyboard for several minutes, shifting screens several times. Then she picked up the phone. “Mr. Mess? Hi, I’m the veterinarian at –“

She looked at the phone, surprised. She hit Redial, and began again. “Hi, Mr. Mess, I believe we were just disconnected. … Uh huh. Yes. … I’m sure you do, but I can hear you perfectly, so …. Why yes, it is about a dog with your chip in it. … Uh huh. … Uh huh. … Oh dear. … I didn’t hear about that. Oh, you did, did you? Well, I go home every night to the county sherif, and he never mentioned that call to me. … Oh, I see.”

Denny saw a vein start to throb in the side of her forehead.

“No, he would not have forgotten, because I’m the only forensic vet in the county. He would certainly have let me know. … Uh huh. … I see. … I think that would be best. … No, we are not a shelter, we’re a vet hospital. Howev-” she had clearly been interrupted, but was listening .. for another moment, anyway. “Let me say that there’s someone who might be interest –” Interrupted again.

The vet made eye contact with him, made a gesture to be quiet, and put the call on speakerphone. A grating male voice came out.

“– and then there’s the vet bills, vaccinations and so forth, plus five weeks of dog food,” the guy said, clearly compiling a bill to see how much he could get for the dog he’d abandoned for free. “And wear and tear on the furniture. And the makeup. That stupid bitch got into my wife’s Lancôme! Do you have any idea how much that crap costs? I’m seriously out of pocket here, and if someone wants that dog –“

She tried to intervene. “Mr. Mess, you misunder–“

He rode right over her. “And then there was the gas to take the dog out to where she could be found. That was not a short trip, you know.”

Denny had had enough. Shasta had long ago told him that she didn’t say much because she hated being interrupted or ignored, and men always interrupt women and most of them never listen.

He stepped up to the phone and, in his most alpha tones, rumbled, “Mr. Mess. This is Mr. Grill. If you’re interested in an accounting, then you should know that this dog has required treatment for damage due to her injuries on the road. As Dr. Smart stated, this is not a charity, it’s a veterinary hospital. If you are saying that, despite endangering and abandoning your pet, you still claim legal ownership, then we will be happy to send you a bill payable on receipt. It’s only fair to say that, even if your lawyer can persuade a judge to grant you everything you’ve listed, you’ll still owe us –” he stretched the word out — “thooooouuusands.”

He took a breath, then pulled on the velvet glove. “If, on the other hand, you relinquish all claim to the dog, then of course what happens after you abandoned it, illegally and in a manner which endangered both the animal and all traffic on that road, then of course this bill is not your problem. And, naturally, your expenses up to that point are yours and yours alone.”

There was a stage wait. Dr. Smart used the time to pick her jaw up off the floor and try to compose herself for speech.

There was a shaky little mumble, in which the word “relinquish” was barely distinguishable.

Denny needed to make this vaguely legal, so he added, “Would you like to conclude your business with Dr. Smart?”

Obliging gurgling sounds. Denny backed off the phone.

Dr. Smart said, very precisely, “Do I understand you to say that you relinquish all claim to this dog?”

Obliging hiss, probably a yes.

“And I can reassign ownership however I want?” She added briskly, “And speak up, I can barely hear you.”

“Sorry. Yes. Do whatever you want. She’s not mine anyway.” He muttered nastily, “Stupid black bitch.”

Dr. Smart reared back, took one look at Denny’s expression, and hung up.

She said to Denny, crossing her arms and leaning back slightly, “You do know she’s all right, don’t you? And this visit is not much more than a well-puppy checkup? And, although I appreciate the good intentions that made you run interference, I can’t support lying, and I and only I am in charge of what happens in my practice?”

Denny thought fast. He reached carefully over to point at one paw. “Um, I think she stubbed a toe. That was related to her being abandoned on the road. Right?” He spoke humbly. It was b.s., but it was obvious b.s., and he radiated apology.

She smiled, unbending just this once. “She certainly could have gotten much worse. Now take her home and teach her to watch the skies for eagles. Something tells me she’ll be good at that, in spite of the odds. I’ll update the microchip database for you.”

Denny reached into his pocket. “What do I owe?”

She smiled wryly at him. “Thooooouuusands. Now get home before Shasta starts worrying.”

Denny said, offhandedly, “Shasta never worries. She’s too sensible.”

The vet gave him a look, a very womanly and very smart Look. “She just doesn’t tell you about it. Good afternoon, Mr. Grill. And good driving.”

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Burning Mercury and the story of Bathsheba

This was written a week ago. Enjoy…

We’re on an extended camping trip, simultaneously waiting for my broken foot to mend, waiting to find out when we can move our travel trailer into a long-term spot, and figuring out how we are going to manage this relationship over the long term — which involves a lot of waiting. So things are quiet and scenic, but, on the whole, not very comfortable.

I was sitting by the cold firepit, looking out across the sere grass and low hills, in a quiet reverie in a quiet hour. I sent my imagination off to find something utterly irrelevant.

What came back was the sign of Pluto, which approached in a portentous manner —
astrological glyph for Pluto
And, in the sideways manner of dreams, said it was Mercury, which normally looks like this:
astrological glyph for Mercury
Then it grew flames, starting from the ball.
pluto glyph with small flame on ball
The flames spread, and as they spread around the symbol and over it, the symbol came close to me.
Pluto glyph nearly engulfed in flames on top
Closer.

Closer still.

Then it hooked its barbs into my side. It was intrusive as dammit. It poked right into my flesh, as if it wanted to climb in.

Trying to pull away, I said, “What the heck are you doing? What do you want?”

It said, “We need your stories.

I thought of my science writing at my biowizardry blog, and it said No. I thought of my anecdotes here, and it said No.

It waved a few pages of books and stories I’ve half-written and said, “We need your STORIES.”

Oh. The imaginative stuff. Didn’t think that was the most unique thing I had to offer, but hey, I’m a writer … I usually do what the little voices tell me.

So here’s a story.

One day, there was a woodcutter and … no, wait, you’ve heard that one. How about this, and I’m writing it from sentence to sentence, no idea what comes next, so be kind…

The story of Bathsheba

Bathsheba was beautiful and did not know it, despite her luscious name. She wanted little, and got slightly less, but she had a gift for appreciation and made the most of it.

One day, while dumpster-diving (she did even that with grace), she came across half a salmon, nearly fresh, cooked with red wine and oranges. It was heavenly. She was only three bites in when a bully named Tom came by, heard her happy little sounds, and cursed and smacked her away so he could have the rest. He never learned that it’s wrong to hit people smaller than you, especially girls.

She scrambled out in a hurry, but he didn’t come after her, so she calmed down and wandered away to somewhere more peaceful. She was glad she had gotten the three bites, and sat on the curb in the sun, licking her lips and enjoying the aftertaste.

A car drove by, spitting fumes and loud music, and a half-empty can nearly beaned her. She leaned aside to dodge it, and went back to soaking up the sun. It was part of city life — she could tell that they hadn’t been aiming.

Another car pulled up, partly blocking the sun, large and with something sturdy on the roof. She pulled her feet in neatly. The occupants didn’t seem to notice; they were busy talking, sounding uncomfortable and distracted. The one on the street side got out and opened the back up, then returned to the front. The two occupants opened out an enormous sheet of paper between them. A map.

Bathsheba loved maps. It had been ages since she’d been able to just relax and look at a map. Curiosity flashed a fin.

Very quietly, she sidled closer to the car’s rear end.

No reaction from up front.

Very gently, very quietly, she leaned — oh so casually — against the rear bumper.

They were having technical issues: the space was too small to turn the map over in, but they were trying.

Bathsheba put one foot on the bumper, experimentally. The piles of clothing and sleeping gear obscured her view.

Up front, the map turning had not gone well, so there were some knocked mirrors and banged knuckles and bumped heads. The trivial dip of the bumper didn’t even show up in the chaos up front.

She shifted her weight, oh so carefully… just to see …

And, up front, the map tore.

One of the occupants burst into tears.

Bathsheba leaped towards the front of the car, then remembered herself — you don’t just go up to strangers, even if all you want to do is comfort them!

Instead, with wide eyes, she crouched behind the back seat, half-buried by piles of clothing and pillows, her back against the hard plastic side of a cooler, looking all her sympathy, yet terrified of the very questionable position she found herself in. She had absolutely no idea what to do.

The conversation up front shifted gear, from frustration and recrimination to apology and comforting. Eventually, and more or less in the middle of a word, the driver put the idling car into gear and pulled away from the curb.

Bathsheba clutched the clothing under her, eyes now very wide indeed. She definitely didn’t belong here, but the car was going too fast to jump out; all she could do was hold onto the clothing, which she was now half-buried in, and hope with all her might that it didn’t fall out the still-open back.

Some time later, she was startled awake by a thud. The driver had stopped the car and put the back lift-gate down. He apparently hadn’t noticed Bathsheba, curled up among the tumbled clothing. The car lurched forward and took off again at highway speed.

She peered over the cooler and gazed out at the darkening sky. There was a great big wall along the road and city smells blew in through the vent, but not the strong stenches she was used to.

She wondered if being homeless out here was any better than being homeless in the heart of the city. She couldn’t even begin to think of how she’d get back. It wasn’t a great life, sure, but at least she knew where the good dumpsters were, and who to avoid. Mind you, it smelled better out here.

She wanted to cry, and maybe she whimpered very quietly so nobody else could hear, but she didn’t dare to announce herself. She had no idea how she was going to get out of this, but maybe something would go right… later…

With nothing else to do and a short lifetime’s experience of stress under her belt already, she burrowed in and went back to sleep among the strangers’ clothes. They smelled kind of nice, like cotton and lemon and something crisp and soft which she couldn’t name, but felt so at home with.

She woke later to a voice, a nice gentle man’s voice tinged with wonder: “Kate, come look.” It was one of the occupants.

The car was still. The air was full of that crisp, soft smell. The sky was dark, with millions of points of light — stars, so rare in the city. There was a fire burning nearby under a grill loaded with wonderful things. The other occupant got up from her seat by the fire and came over.

The two people looked down at Bathsheba, utterly tangled in their clothing, utterly helpless, and curiously at home.

They didn’t snarl. They didn’t throw cans. They didn’t invade her privacy or try to grab at her.

They just smiled — two kind, sweet, wondering smiles. They looked like they were witnessing a minor miracle, and like Bathsheba was someone they already considered a friend.

Bathsheba couldn’t help herself. The clothes under her fingers curled. Her chest stretched. Her eyelids squished gently closed, then opened again. She purred.

“I think you’re going to like it a lot better out here, kitty,” said Kate.

Bathsheba wanted to correct her, and say her name was Bathsheba, not Kitty. But just then, Kate reached out with two hands and gently scooped her in. Bathsheba felt Kate’s slow, solid heartbeat — thubump, thubump, thubump — against her own soft little body, and melted into joy.

Don’t worry. There will be plenty more science, and plenty more stories too.

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