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.
A healthy person needs a lot less than a painie; women need a slightly higher proportion than men. Recommendations are based on healthy men. Think that over for a minute, painie women…
More and more science is discovering the link between longstanding pain disease and demyelination, that is, the protective layer of fat around certain nerves. Without that protective layer, the nerves can’t work right and rapidly get very sick and sore.
A healthy person can maintain myelination on a normal diet. That’s great for them. It’s why we call them normal.
We have a lot more demand on our myelination. We are playing a different numbers game than normal people. Normal diet is not necessarily right for us. A low-fat diet does not necessarily support myelin enough for those whose nerves are as heavily besieged as ours are.
We benefit, more than most, from staying away from poisonous fats, like hydrogenated fats and conventionally-farmed flesh foods and farmed fish. They can really push the poisons into our sensitive systems.
We need, much more than most, to get cleansing and healing oils and fats of all kinds:
– from omega-3s in fresh vegetable oils (avocados, olives, sunflowers, nuts, seeds) and wild fish (salmon, sardines, cod, menhaden fish),
– to the medium-chain fatty acids in cocoa butter and coconut, both of which are wonderful to cook with (vegetables sauteed in refined coconut oil are outstanding),
– to the naturally saturated, artery-*cleaning* fats in 100% pastured dairy (cheap source: Kerrygold butter!) and other flesh foods raised according to their genotype (scratching poultry, rooting pigs, pastured herd animals, etc.)
*Fats and oils are necessary, in the presence of ongoing nerve damage.* They provide mechanical, physiological, and anti-inflammatory support to the beleaguered nerves. Lack of adequate lipid intake can worsen the nervous system’s situation, which has knock-on effects on the metabolism, cardiac system, digestion, endocrine signalling, and so forth. The nervous system drives every system in the body; without adequate support, it can’t do a good job. Very simple.
When I first got knocked down by CRPS, I couldn’t lose the sluggish-digestion-related extra weight or improve my functional level, until I raised my intake of healthy lipids to about 2.5-3 times what the recommendations said. Once I was getting enough of these neuro-protective and anti-inflammatory ingredients, my metabolism went up, my pain and clothing-size went down, and everything got significantly better.
The temptation then is to overdo, which still helps reduce pain at the time. Half a tablespoon of grassfed butter is better than a pain pill for me. Unfortunately, it was a high-pain winter, and I used it several times a day. That created a much bigger body than I can manage, and that puts more strain on my joints and bones. I’m working on that right now. I definitely overdid the pain-reducing foods through all the activity around moving and travelling my first 6 months here. I’m about 20 pounds down, but it won’t really show for another 20.
We like to eat serendipitously — it’s natural, and harks back to when we ate whatever was around: apples, berries, tubers, mastodons, and so on. Unfortunately for me (as it is for many spoonies), I have to be very thoughtful about what I eat. As my brain gets clearer, it becomes easier.
It’s too bad, because I’d love to be thoughtless and festive about food once in awhile, but I’ll have to be content with being thoughtful and festive instead. It works better.
This disease, like time and life, dips and dances but tends to go in one direction. As long as it doesn’t outrun my ability to adapt and amuse, I can put up with that. After all, we’re all born with a one-way ticket, and sooner or later we have to get off the ride. Not all of us get a chance to prepare for our exit, or even get much warning as to what it will be like.
In my first nursing job, on an HIV unit in the very early 90’s, I had a Mexican soap opera star as a patient. He was lovely, in every way.
This was his first hospitalization with the disease and he hadn’t found his particular polestar, the thought/idea/perspective that would keep him determined and alive for however long he had. He was a lot of work emotionally, needing much encouragement to keep trying new treatments (and they were very new back then) and to keep eating even when he didn’t feel like it and so forth. He had been in for a long time — over a week.
One day, while I was setting out some medications for a complex patient who needed his meds punctually, and didn’t have time or attention to spare, the soap star came mooching up to my med cart in his hospital gowns (one in front, one in back) and huge, lustrous eyes.
With what attention I had to spare, I thought, “go away, come back later” as hard as I could. Didn’t work that time.
He said, as he’d said before, in the same miserable tone as always, “I’m going to die.”
Up until this occasion, I’d stop what I was doing and gave him a full minute of attention and cheer him up a bit.
I didn’t have a minute right then. I had maybe two seconds. “Everyone’s going to die,” I said, barely pausing in my dosing and calculations.
Long silence next to me. I kept doing my job. (Keep in mind that nurses are paid to dish meds, not counsel and encourage struggling patients. That’s all that the staffing patterns allow.)
Then, in that delicious accent, a voice like the rising sun announced, “You’re right! Everyone’s going to die!”
I heard him drift back to his room, muttering in wonderment, “Everyone’s going to die… it’s not just me,” and I smiled to myself. I wasn’t usually rude to patients, but it sounded like it was exactly what he needed.
My other patient got his meds on time. So did the rest. At dinner that evening, my soap star sat up and devoured every bite, beaming and bouyant as we had never seen him. I began to see what all of Mexico had fallen in love with. He was discharged next day, full of fight and life again.
Somehow, that brutal realization — that everyone dies, that being doomed to death isn’t special — was what he needed to break the spell of misery that his diagnosis had put him under. He had staggered in a broken boy, and he walked out a free man.
I don’t understand it either, but it sure worked for him.
Perhaps I do understand, at least a little. My experience with that revelation goes a bit further back, though.
I had a book of rhymes when I was little. Most were delightful, but there was an old one about a sick little girl that contained the lines,
“Doctor, doctor, must I die?”
“Yes you must, and so must I.”
I went through a jagged 6 months when I got to grips with the meaning of that (plus, I thought it was a rotten thing to say to a sick little girl.) My mother got tired of assuring me I had never been nearly sick enough to worry about it and, on further questioning, assuring me that she and Dad wouldn’t pop off for a long time yet, and I’d be an adult and able to handle it.
Later, I vaguely remember looking around at a sunlit day, seeing my brothers and friends playing in the sun, the leaves of my favorite tree fluttering in the breeze, and knowing everyone would die one day…
…but not yet.
Now, we were all alive and together.
Better grab it! Yes!
A smile pushed up through my whole body, and I went out to play.
I think that’s when I first began to understand the difference between being a spectator of life and being a part of it. That realization was rooted in knowing that it’ll end one day, and I didn’t want to miss out on whatever it had to offer in the meantime.
Perhaps that’s what my remark to my patient did for him; but, being older, he could process it in 6 seconds, rather than 6 months. Everyone dies; but right now, I’m alive!
I could be wrong, but I think my insistence on being a part of life is a big piece of my adaptability, not only to this wretched bouquet of stinker diseases, but to everything.
What do you think? I’m curious if there’s a link between knowing death and survival, between a lust for life and adaptability. I’m not talking about Norman Cousins’s ideas of exceptionalism, but of an ordinary, grubby-handed greed to be in this thing called life, warts and all. What does it take to reach that?
This might be the question that shapes our future ideas about adaptation and resiliency.
A dear friend is embroiled in one of those ghastly legal tangles where the vultures are rigged to win. I’m the key defense witness. This comes up later.
This whole winter, I’ve been basking — simply basking! — in the sheer delight of being safe, sheltered, warm, loved, and with as little chaos as anyone with a recent move, a complex illness, and widely scattered relationships can get. Occasionally, I’ve wondered if I’m allowed to be in such a situation, and strained my ears for the sound of the other shoe dropping… Then I do a reality check, tune in with my lovely partner and my lovely housemate/hostess, and it appears that no, it’s okay, things are right, and this is what’s right now.
My nod to the fairly relentless self-management that got me through the past decade has been an occasional effort at meditiation, a minute or three of qi gong, a few moves of t’ai chi now and then, or the occasional mood-check.
In short, diddly-squat.
In December, I lost it with a dear friend.[LINK] I did more mood-checks for awhile, a bit more meditation, maybe ten whole minutes of t’ai chi every other day for a couple weeks.
I was heartbroken at the mess I’d contributed to, but couldn’t dig up the motivation to really “do the Do”, to restart my hard-won disciplines.
Dear heavens, it was soooooo good to rest, just relax for a change, enjoy the sensation of not looking over my shoulder and not being constantly *forced* to calm sometimes-legitimate terror or possibly-reasonable panic.
It was winter. I was safe. I let my disciplines sleep.
Meanwhile, the brakes on my car[LINK] were acting up, or rather, occasionally failing to. $2,000 later, that was supposed to be fixed.
Gradually, I noticed that J was telling me, more and more often, to lower my voice: “I’m right here!” Huh. I didn’t think I was talking that loudly…
As I relaxed, other humans became more interesting and I started striking up conversations with strangers, as I used to do. They didn’t respond as well as they used to. Odd…
On social media, I found myself being snippy where I used to be sweetly witty or wryly amusing to make the same point. I backed off of my online time, because if I can’t manage myself well, I’d better not interact with anybody else who might be feeling frail. “Do no further harm” has been wired into me from way back. It’s the most basic courtesy.
I took the car back for a second brake job a few weeks ago, only $150 this time, and that seems to have taken care of the problem. So my cynicism about car dealerships remains unimpaired, thank you.
Meanwhile, there were some tellingly unpleasant procedures[LINK] which illuminated a fact I’m still failing to accept: CRPS has moved into my viscera — it has leaped out of the musculoskeletal bounds and gotten right into my core. I used to say my case was “all-body”, but that was because of the gastroparesis and subtle endocrine weirdness, which I figured was simply faulty autonomic signaling. It has definitely become much more.
I could feel every line of my intestines and the springy squashiness of my organs as the ultrasound tech noodled around on my abdomen, and the less said about the gynecological exam the better. It’s real. It’s a bed of coals in there. This finally sank right through my skull over the past few days.
Damn damn damn damn damn damn damn damn damn damn damn damn damn damn damn. With extra damn.
So, now we’re up to this week.
I spoke with the lawyer involved with the vulture case mentioned above. I went off on a tear about the duplicity and injustice involved. He finally broke through by howling my name in exactly the tone my mother used when I was getting out of hand. Once I was quiet (and abashed), he said very sweetly, “If you’re going to go on like that, you might as well hit your friend over the head with a two by four.”
Two things happened. I realized that my self-regulation was much worse than I had ever imagined; and I spent the day in a state of total exhaustion and emotional fragility, the classic signs of a massive adrenal-dump.
SIMPLY GETTING WOUND UP IS BAD FOR ME. The mere state of emotional excitement is poison to my system.
I used to know that.
I used to know when the emotional excitement was coming, and could head it off.
Nope. Caught me completely by surprise.
So, I’ve been processing all this for a few days to a few weeks now. I’m coming to some conclusions, and have a few remaining questions.
I’m pretty sure the spread into my viscera had a lot to do with the merry-go-round of the past few years.
The spread in my brain may be related, in fact it must be; however, I’m pretty sure that re-incorporating my habits of self-care and diligence can get back quite a lot of the gentle precision, sweet tact, and pleasant diplomacy I was once capable of.
So, in keeping with this revelation, I’m going to acknowledge that I’ve completed my alotted time for being on the computer and get up to go do some morning activity. Then I’ll put my feet up for a bit and lunch on brain-supporting food. After a digestion break of an hour or two, I’ll do something physical in the afternoon, including 20 minutes of t’ai chi or qi gong. After that, an hour of work, which today will consist of loading my classical collection onto my tablet. This evening, I’ll spend an hour listening to classical music, then meditate, then apply my lotions for pain and muscle spasms before bed.
There are no bloody shortcuts. None. It’s just work, and it doesn’t stop.
I’m still supremely glad to be safe and warm and loved. I just have to wrap my thick head around the fact that it doesn’t mean I’m off the hook for taking care of myself.
I’m an old ER nurse so please, trust me when I say that nobody gets a guarantee with this life. Nobody really knows what’s next, and indeed, everything CAN change in an instant. Even for the healthiest. (This is why the legislation torturing the elderly and disabled makes me livid. People who favor that legislation are poisoning their own future. Everyone who lives long enough will become disabled.)
The point is this: it ain’t over until it’s over. If you’re still breathing, you still have a life, you still have choices. If you’re still alive, you have some influence over the next moment, and the one after that, and the one after that. Only you can decide where to put your focus, for each breath of this life that is left to you.
Being aware in the midst of the hell is what capable spoonies do, and we find a bit of heaven in it whenever we can. Yes this sucks like nothing we could have imagined, and I have a crazy imagination; but I still KNOW that there is a lot more to my life than this pain, this weakness, this utter destruction of everything I thought made up my life.
Turns out that was all peripherals. When the structures of my life were utterly destroyed, I looked around at the blasted rubble that was all that remained of my old ideas of my work, my abilities, and myself. I wondered who I was.
And I realized I was the point of awareness that was doing the asking. I also realized that, without those assumptions holding me down, and despite the agony and unbearable loss, somehow I was free, I could be more simply and purely myself.
So now I’m on groups for this brutal disease, wanting to give comfort, but knowing the only really true thing I can say is, there is comfort to be had, but it’s up to us to make room for it in our lives, to push right past the pain and fog and grief to look for the rest of what this world still has to offer.
There is excitement and peace and ease and delight in this life, but we have to find ways to make room for it, to find time to notice it, even in the ongoing roar of this pain. Over time and with practice, we get better and better at the peace and the joy and the loving connections, and .. it’s not that the pain is any less, because the rocketing nausea these past few days tells me otherwise, but it doesn’t matter as much, because more important things have taken its place in the core of our lives.
Easier said than done, but it’s basically a matter of practice. It doesn’t come naturally, and nor should it, because anyone who responds to getting a leg ripped off with, “Oh, what a lovely flower!” is probably not going to survive to raise offspring.
Being frantic in the face of horrible pain is a good survival mechanism — as long as the pain subsides when it should. For those of us who live with that kind of pain, we have to learn to re-program that core survival response (!!!) and be more mindful about how we deal with life.
Find excuses to celebrate. Finished the dishes? Celebrate! Heard from a good friend? Celebrate! Is it Tuesday? Good enough reason — celebrate! It sounds trivial, but it works. It makes your brain stronger, bit by bit. Each success prepares you for more.
In the Years from Hell, when I didn’t think I’d live out the year for a number of years, I was utterly wrung out with misery, and I refused to accept constant grimness. It was intolerable, literally intolerable; if I left my thoughts to dwell in it, I’d have had to finish myself off.
I turned my attention to whatever was not misery, and sucked the juice from it.
I noticed every sparkle of light on the water, every flicker of color in the tiny wildflowers in the grass, the way trees spread and shake their branches, the caress of the air on a fine morning, the particular blend of colors in every sunrise or sunset I was up for, the way the sky and sea reflected each other in every weather.
I got to learn the habits of the birds, from the imposing night herons to the unearthly blue herons, rare goldfinches, raucous terns, fat geese, chatty ravens, and the everlasting seagulls. I noticed the weird little shrimp living in the greenery below the waterline on the docks. When I could, I got up on shore at sunrise around the equinoxes to see the incredible light-show as the San Francisco windows were lit up by the first liquid rays of the sun, a dappled bank of golden glory marching up the hill across the Bay.
I was like a seagull for joy, pouncing on every bit of it indiscriminately. Time enough for the grey grims when there was nothing else to find. I leaped on every chance to find some beauty, some moment to get lost in.
Sometimes I was disappointed: sometimes the weather soured; sometimes a friend wasn’t answering the phone; sometimes a dash of color was a piece of garbage, not a flower. (I still pick up random garbage when I’m out.)
Working to find bits of joy was probably the most important tool in getting me through, because I could use it every day and it didn’t depend on anyone else to work. Fortunately, things did eventually change, and I was there to rise with that tide.
I trained myself well. To this day, I find myself stopping and staring when I see sunlight or moonlight shining on water.
It’s the most beautiful thing in the world to me. It saved my life day after day for years, so that probably makes sense, eh?
Be greedy; work at finding beauty and joy. It’s good for you. If nothing else, it pierces the veil of pain and frustration and it reminds you that there is a larger world, one worth getting to. Your old reality may be gone, but there are aspects of the new reality worth cherishing. I hope you all find the beauties that make you stop everything, just so you can get lost in them and soak up the joy.
Updated to reflect much experimentation and the final recipe, Dec 16, 2016
We forget that tooth pain is nerve pain. There are big fat nerves going right up into every one of those 30-odd things in your head.
I have sensitive teeth, related to the fact that I have CRPS, which does its very best to thin the bony tissue out until it’s like a lacework pattern crocheted by the famous one-armed wallpaper-hanger.
So, basically, my head is set up for lots and lots of nerve pain.
Have you noticed that there are no brands of toothpaste for sensitive teeth that are anything other than mint-flavored? Moreover, the toothpaste focus groups apparently like a strong minty taste, because that makes them feel like it’s working. Heaven forbid they just lick their teeth to find out, I guess.
The vocal but persistent minority that does NOT like a strong minty taste apparently just isn’t profitable enough to serve.
Those of us who find it obnoxious or uncomfortable, or who are sufficiently chemically sensitive that the mint actually causes a chemical burn? Tom’s of Maine provides a couple of marginally less-caustic alternatives, but none for sensitive teeth.
That’s right, folks. Chemical burns to go with your sensitive teeth. Isn’t that clever?
So, my dental routine has sucked for years. First, brushing requires tension in my wrist tendons for a couple of minutes. Second, it jars my joints every time I switch direction, which happens a lot. Thirdly, I’M GIVING MYSELF CHEMICAL BURNS THROUGHOUT MY MOUTH. There’s something very wrong with that. Fourthly, in the nature of a cherry on the sundae, toothpaste doesn’t actually seem to get my teeth clean. It scores lines in the muck, but it doesn’t actually clear it away.
The routine I developed, which I could only do every few days, was this:
1. Damp washcloth to wipe off the muck, front and back, top and bottom. Only way to clear it off.
2. Floss with a flossing sword, hoicking more muck out from between the choppers.
3. Brush with the least-burning sensitive-teeth toothpaste I could find, the Walgreens brand.
That’s going to happen twice a week at most, not twice a day. It’s a lot of fine-motor maneuvering and, of course, the CHEMICAL BURNS THROUGHOUT MY MOUTH make it hard to look forward to. I can’t eat or drink anything for at least an hour, not without slamming the cup down as I’m sharply reminded why that was a bad idea.
This is a stupid problem to have. It should not be hard to have a non-burning toothpaste which will get the muck off my teeth and protect them afterwards!
Then a friend of mine (a fellow spoonie with a different set of spectacular health challenges) mentioned that she had been using calcium carbonate to brush her teeth, and they were suddenly whiter and stronger and better.
Then the pieces started coming together in my head. I put the calcium carbonate (yes, it’s chalk, in case you were going to look it up) together with some other things I knew about handling oral hygiene in the non-conventional, post-industrial world, and made my own toothpaste.
With one brushing, half as long as my old brushings, my teeth got COMPLETELY CLEAN. I might be hallucinating, but they seem a half a shade lighter after 1 day and 3 (that’s right, 3) brushings.
I’m keeping the potassium-nitrate toothpaste nearby in case this doesn’t work out within a week for sensitivity, but this is a real pleasure to use! It’s tasty, it doesn’t hurt, the jarring isn’t as bad on my wrists and I don’t have to do it as long, so I can actually brush my teeth a couple of times a day and it hardly takes any spoons at all!
This was so worth it 🙂
ADDENDUM/CORRECTION: So, the original recipe for toothpaste was outstanding for a few more days (when my teeth got visibly whiter and felt fabulous!) but the pain came back, absolutely unbearable. I couldn’t eat solids at all. I suspected that the calcium carbonate, which is extremely absorbent, basically sucked the potassium nitrate out of my teeth and may even have trapped the clove oil so it couldn’t do its job. I used commercial sensitive-teeth toothpaste for a few days until it stopped, went back to the homemade toothpaste to build up my teeth, and went back to the commercial stuff every so often as needed, until my home-made tooth PASTE turned into tooth SOLID. The calcium simply did what calcium carbonate does: it absorbed all the water and solidified. It is spectacularly good at absorbing liquid.
After lots of, um, learning experiences, I came to terms with the fact that the only tooth care I can manage to make for myself is not going to be a paste.
I’m not interested in adding glycerine and strange oozy substances to my dentifrice. It’s tedious, mucky, and provides no benefit I care about.
I grew up watching my dad clean his teeth with tooth powder, and he had the best teeth in the house, so it doesn’t seem odd to me at all.
I shake about a half teaspoon into my palm, dab it up with a wet toothbrush that’s as soft as I can find, and my teeth are cleaner and whiter, with less effort, than ever before.
Here is my..
Toothpowder recipe for sensitive tissues:
~1/3 powdered xylitol, a specific non-caloric sweetener.
~2/3 powdered calcium carbonate.
If you like, add to each cup of powder mix:
20 drops essential oil of sweet orange (to boost the cleaning and de-mucking)
20 drops essential oil of clove (to ease nerve pain)
+Why xylitol? Because it loosens the muck. It disrupts the biofilm made by all the different bacteria getting together on your teeth, by dissolving the glue that holds them together. (This is why your dentist likes you to have xylitol candy if you must have candy.) I recommend the xylitol made from hardwood, because the corn-derivation has gotten so that almost anything derived from corn makes my pain spike. Sad but true. I get mine from http://store.xylitolusa.com/xylitol/.
Forward-looking statement (e.g., dream castle)
In the fullness of time, I hope to have a little cottage industry making this stuff up and selling it on to those who need it but can’t put it together or can’t get the stuff in bulk. Fingers crossed..
Chronic pain patients are often called Difficult Patients, when the casual cruelty and reflexive contempt of medicine and the ignorance of other people grates too hard against our increasingly impaired ability to compensate and deal with it as calmly and “rationally” as we used to.
I’m less and less certain that casual cruelty and reflexive contempt are rational to deal with. Really, the *rational* thing to do is draw the line when professionals behave badly, no matter what the profession.
I’m increasingly certain that those who provide care, and have gone to all that effort to be trained and licensed to do so, should probably take on the burden of acting with more kindness and courtesy than those who pursue less intensive interactions with the wounded, disabled, and ill. Not less courtesy. More.
The rational thing for the professional to do then is to reckon that requirement into the cost — because respectful and courteous patient interaction saves money and improves outcomes, but more/higher administrator salaries do not. The data on that are very clear… though strangely hard to dig out on the second point.
I sometimes mull the mindframe I had when I was working as a nurse, which was deeply compassionate without being cuddly or fluffy. I was well aware that only one person was paid to be in that room and adjusted my expectations accordingly. But still, I think of the casual disregard of others’ humanity that defines so much of health-professional behavior, and wonder at the culture that reflects. It’s not that we have to do degrading things like shove needles and hoses into people, it’s that we won’t let them wear real clothes or secure their electronics or even eat real food, when they’re in our hands. We no longer even warm the gel.
CRPS patients are a special category of chronic pain patients: we may be dealing with a level of pain consistently rated as higher and more intense, not to mention more constant, than anything else — including childbirth, most cancer, having fingers ripped off — with the sole exception of terminal cancer pain, which is at the top of the McGill Pain Index. It’s horrible but true that terminal cancer pain doesn’t last as long.
So, we are a distinct, and distinctive, subgroup of the Chronic Pain Patient set.
On top of that, of course, the brain remapping and the neurochemical disruption of longstanding CRPS means that our central nervous systems are absolutely hair-triggered for terror reactions, which transmute into all sorts of other things when our intellect has to wrestle with the terror… because screaming and fleeing blindly into traffic shedding broken bits of furniture and wallboard is, somehow, neither socially acceptable nor particularly useful.
My old pain doc, Dr. Richeimer at USC Keck Pain Center, has a wonderful term for those whom lesser physicians call Difficult Patients:
Isn’t that perfect? Easily broken, and when broken, extremely messy and hard to clean up after. Treat gently. Treat extremely gently. Understand that you may have a mess on your hands anyway. Keep your cool, adapt on the fly as the egg rolls around, and stay gentle. There’s really no other way to handle it.
Silly me. Turns out a “long appointment” is 15 minutes. That’s not a typo. FIFTEEN MINUTES is a “long” appointment.
I really haven’t been keeping up with the downward slide of the health care field below the level of the best-of-the-best I’ve had out West. I’m speechless.
Did you know it takes 5-7 minutes just to say hello and catch up on the case with a complex patient? Do you know what it’s like to have a speculum inserted into a body that is one long scream of pain already, and the tiny, cheap, but essential steps it takes to make that a wise thing to do? Did you know that good practice for intrusive procedures, especially for those with PTSD around their bodies (which includes most women, frankly) is to meet the patient while they’re still clothed and have them undress for the invasion-fandango after they’ve had a chance to be human, and not just one long scream?
I know, it’s crazy to think that patients are human. Forget I said that. I don’t know what I was thinking! Pfft…
I told the office twit who roomed me and informed me that it was a 15-minute vist that a Pap smear on a CRPS body was not going to happen in 15 minutes. Twice. She set up the torture implements, which did not include Lidocaine gel or a warmer, in the cool office, and told me to get completely undressed and climb into the gown she laid on the exam table.
She didn’t mention that my provider, the one decent and rational entity in that department, was running very late. I had to find that out for myself.
Sitting in the cold room, staring at the torture tray laid out directly in front of me, still fully dressed because I could not succumb to being led like a lamb to slaughter, I tried to calm myself, to get my brain out of the state of being hijacked by terror at the casual cruelty of being tortured into spreading this hideous disease into my viscera, and helpless rage at this high-handed and disrespectful way of being treated.
I tried to reflect that, clearly, a lot of women who came to this office for care put up with it and, knowing New Englanders, never even thought of complaining because that would be a sign of weakness.
I tried to tell myself that my provider would surely rinse the speculum in hot water before using it, but that thought was booted immediately. I know from prior experience as a healthy person that a plastic speculum does not hold the warmth, but it does hold drops of water as they cool off quickly, and the temperature of that object does not affect the temperature of the 60-degree gel they put on it.
So, viciously cold thing going into my CRPS-y body’s core. Then that pinching, twisting jolt as it snaps open in mucous membranes which are wired straight into my central nervous system as well as my visceral cavity. During a weather- and trauma-induced flare.
There’s just no way that can go well.
I sat there for half an hour, trying not to stare at the torture implements although they were unavoidable in that tiny space, feeling my brain run circles around itself, trying not to scream, feeling my capacity for verbalization and rationality bleed away in the chill.
I realized that, although I wanted to connect with my provider and use the time profitably at least in discussing these problems and finding out my ultrasound results, I couldn’t sit there any longer. I needed forward momentum if I was going to come out of this intact.
So I spent the next 8 minutes writing my provider a letter, left it on top of the Patient Update document I had brought in (which mentioned my prior interactions with the staff, ALL of which had been record-setting-ly stupid and unproductive), and I left.
I did NOT run screaming into traffic. I didn’t break anything on my way out. I politely commanded the twit to copy my letter “now please”, stood over her while she did it, laid the paperwork I’d created for my provider in a neat pile on her table, and kept my copy for my records.
Then I quietly walked out, smiling politely at my provider as I passed her in the hallway heading towards the nurse’s desk.
I made very little mess, for a fragile egg.
I got my documentation, but forgot my purse. There’s something very Isy about that. (I’ll go collect it next business day, and hopefully that will be the last time I have to see them.)
So, this weekend, I have to do 2 things: find a gynecologist equipped to handle complex patients, and put together my own gyn exam kit — with a suitable implement, lidocaine gel, and heating pads.
Sometimes, BYO* is the only way to go.
I may be a fragile egg at times, but I don’t like it and I don’t intend to live there. I can’t control the industry, but I can control what I walk into the room with.
*Note for non-native English readers: BYO is for Bring Your Own. BYO is derived from BYOB, which means Bring Your Own Beer/Booze, normally used in regard to parties (obviously!) BYO moved into common usage on its own as a handy verbal shortcut; it’s still informal, but not nearly as informal as BYOB 🙂
UPDATE from early March
I got my own speculum, the Pederson type (which is a bit narrower); found food-grade silicon sealant (which smells strongly of vinegar, but nothing more toxic) and applied it over all the contact surfaces and where the edges meet; and prepared a bottle of pain-reducing Emu oil with a bit of nerve-pain-reducing Clove essential oil added.
I called the largest and oldest gynecological practice in the area, and asked for the doctor with the lightest touch. I was a bit disturbed when a large, fit, square-jawed, brush-cut fellow walked in, but he turned out to be an angel. He was happy to use my speculum, poured quantities of my pain-reducing oil over that and his hands, and gave me a break halfway through the procedure to sit up, get my pain/panic response under control, and pull myself into reality and out of the shocky place.
I’m sorry to say that the Pap test itself was a lot like having burning coals shoveled into me and pushed around, so yeah, there is definitely some nervous system remapping that has already happened to my insides. (It used to be an unpleasant little scratching sensation, and no more.)
This doctor wisely asked for a copy of the funky test, which was my serum DHEAS level. I went to my other doctor’s and got copies and ran them over myself. I took a look…
The doctor who’s substituting for my allergy/immunity doctor who ordered this test dropped a very serious brick. THE TEST HE REFERRED TO WAS JUST FINE. I do NOT have an abnormal DHEAS value. It’s a whole lot more normal than the rest of me!
I wrote the gynecologist a note on the back to that effect, and let him know that he did the lightest, best possible job under the circumstances and that I’m grateful. He looked absolutely white and shocky by the time he left the room, so I think it was a pretty horrible experience for him too, and I don’t want to scare him off of treating other pain patients.
I got a Pap test out of the way and learned something important about the state of my disease. I’m being more diligent about my multivitamins and SAMe, the methionine-based antioxidant I use as my main antioxidant supplementation besides vitamins. I’m researching the least nutty, most promising pain centers near me, at Yale and Brown Universities (Dr. Pradeep Chopra is at Brown, so that’s probably first on the list) and this week I’ll be making appointments.
I guess every setback is really a redirection or a kick in the pants for me. I may have CRPS in my viscera (which would explain a few things) but I needed to get my act together about getting a pain doc anyway. My DHEA test was normal, phew, but I’ve been harshly reminded to double-check everything the doctor says. I’m seeing my usual doc at that practice soon, and I’m going to ask him to double-check DHEAS results to see if any patient has been left uninformed and unfollowed-up.
I took a few days after the Pap test to simply refuse to think about it, because I did NOT want THOSE pathways to go any deeper into my impressionable brain! Took it easy, watched and read silly things, ran errands with J, took loads of vitamins and drank plenty of water… then started researching the pain doctors.
This is my policy… strategic withdrawal if necessary, yes; pause, rest, reboot, definitely; but in the end, “Never give up! Never surrender!”
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.
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.
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.
In CRPS and dysautonomia, several parts of the brain get under- or over-enthusiastic (or both, unpredictably.) It’s easy to oversimplify, but even more confusing; each part of the brain has many jobs, so I can’t say that the anterolateral cortex does one thing and the cingulate cortex another.
I can boil it down by the effects that these remappings have, though. That’s relatively simple!
So, in me, this is what happens as a result of these scrambled brain bits.
1. Obviously, pain signals don’t know when to pack it in. That’s obvious. They just keep going and going and going and going and…
2. Coordination gets impaired. I used to be freakishly well coordinated, so I don’t normally get much sympathy, but this is a bit unfair.
I had 38 years of knowing exactly where my body was in space, of being able to move without triple-checking myself, from the time I first learned to walk. Or, rather, the time I first learned to climb out of my crib. … Several months before I was steady enough on my feet to toddle, I’d do a layback (a climbing maneuver where you grab one edge of a gap with your hands and then walk your feet up the opposing surface) to get up the side of my crib…
…then rappel down the rails and crawl down the hall to my parent’s room to let them know that it was almost dawn and I was ready to play.
I also learned to jimmy the rails so they came down altogether, but that took a little longer. More engineering and upper-body strength involved, you know. (I got a bed well before I was two. They figured it was safer.)
I’m not used to living in a world where my body isn’t exactly where I think it is. I probably take more damage than someone who’s been this poorly coordinated all their lives, because there’s this huge layer of bewilderment and surprise. Not to mention lack of preparedness.
I don’t compensate for it unconsciously — I have to be very conscious about being careful bending over, walking not running down stairs, always wearing de-skids when I go outside in the snow. This requires a bit more bandwidth than just doing things as you normally would.
3. The third and most annoying thing is, my brain just LOVES to go to anxiety.
Anxiety is a bit of a circus. It pushes up my blood pressure and makes my heart beat fast, which is worrisome in itself. It makes my vision go whitish, like everything is covered in fog. All this makes it rather hard to think, to reason out whether I really have cause to be anxious.
Then my stomach starts nudging the back of my throat, which is never pleasant. I keep ginger near all the time, because Tums just make it worse and I can’t stand Rolaids or any of the others.
Then my waste systems get into a tizzy and I feel like I have to go wether I do or not. If I don’t need to go now, then I will in half an hour, because (as I’m sure you remember from anatomy class!) the adrenals sit right on the kidneys and when your adrenaline goes up, so does your kidney activity.
So, on an eventually related subject, I recently got worked up for endocrine and allergy issues. The tests are still rolling in. A couple of blood tests were funky, so I need to get screened for gynecological cancer, and I need to get checked for pancreatitis — which, with my squeaky-clean life, would be decidely, wildly, completely idiopathic — if it isn’t cancer.
Naturally, part of my brain is throwing up images of a midsection riddled with malignancies. I’ve seen a few of those, so it’s not a big stretch.
That’s it, I’m doomed.
Stomach… wait, the stomach goes with the pancreatitis.
What notion of reality am I in now? The cancer one or the anxiety one? Because I can ignore the anxiety one — OMG I might have metastatic cancer! Everything’s turning white! My heart’s going too fast! AAAUUUGHHHH —
And this is where my head starts spinning around and the pea soup comes out at projectile velocity.
Not really. It just feels like being in a horror movie sometimes.
I’m lucky. I have a sense of humor. I just think about horror tropes when this circus starts, and I snort and calm down a little bit.
I have to jump on that first lowering of tension or it spins right back up. This is the dysautonomic brain at work — getting right back to panic is the easiest thing for it to do.
If mentally reaching out for my anxiety dials and trying to turn them down doesn’t help, then the very next thing to do is yawn.
It’s an incredible tool — no bad side effects, many uses. Plus, you can do it in company.
Let me explain.
Yawning starts with pulling air into the deepest part of my lungs. I can imagine it going all the way down my spine and filling the bowl of my pelvis. My ribs reach out and stretch nicely. This deep breathing is the first key.
The second key is that my jaws open up wide, releasing that clenched set of muscles there. It’s impossible to grit teeth while yawning.
I may find myself in a yawning cycle — yawn after yawn, for a good five minutes. I figure I need it. All that oxygen, all that jaw-releasing… hard to beat.
Now that my torso, shoulders, neck, and jaws are unclenched, now that I have enough oxygen circulating to let color come back into the world … now I can begin to cope.
The first thing I do, before getting up, is check my breathing. I’ve gone back to breathing from my belly, drawing air down to where it needs to go. Good.
The next thing I check is my head and neck. My jaw muscles feel softer and my neck is flexible; I give it a stretch or two each way to check. This is good.
This is a functional situation now.
Okay, I’ve done all I can. I’ve pulled myself out of the anxiety tailspin. I’ve made the next round of appointments.
As I keep telling others, don’t borrow trouble; all I can do is get on with my life while I wait for those appointments and their results. I’ll take it from there.
It doesn’t help matters that I’m worried about friends and acquaintances who are facing verified life-threatening situations. The background anxiety makes my own triggers harder to handle. But I’ve done all I can there, too. I have to accept my limits and hope for the best for them.
It’s hard to see good people being treated like disposable objects. There’s something very wrong with that.
As a historian, I know that human societies go through these cycles where the empires get bigger, the oligarchs get out of hand, and then a lot of people die as the system falls over and much is lost, and then eventually a set of new systems arise from the rubble. Eventually some of them flourish, a few emerge as empires, and the whole cycle goes around again.
I hate being in a falling-over period of history. There is so much we could be doing that does not involve ripping people and nations apart to see how much money can be made from the minions before everyone dies.
Sadly, I don’t get to make that decision. I’m not an oligarch.
I’m used to it. I grew up in places where electric outages were common. We’d just get on with our homework or reading or tending rescued kittens’ eyes or arranging little army men or what-have-you.
If it was after dark, a parent would call out calmly, “Everyone ok?” and we’d bring our projects to the living room, saving candles by having one well-illuminated space instead of five poorly-lit ones. It was cozy. Quieter than usual. Arguments rarely started when the electricity was out. It was too pleasant to spoil.
My housemates have different experiences entirely.
I live with two adults with wicked ADD. They NEED the TV. The tech-savvy one NEEDS internet. Sleep is out of reach if they can’t numb out their brains first.
I was soaking up the peace, purring inwardly with the candle glow and the outstanding peace.
No hums, no clicks, no TV, no wifi, no human-made radiation bouncing off my spinal cord and twizzling my brain with little egg-whisks.
I loved it.
Meanwhile, my two darling family members were going quietly insane.
They tried going to sleep to take refuge in unconsciousness until their lives became bearable again.
I could hear the ends of their nerves curling and uncurling, even through the closed doors.
They’d bounce up again in ten or fifteen minutes, one upstairs and one downstairs, and I’d hear them dashing quietly around in their unnaturally quiet spaces.
I sat in the squishiest chair in the living room, curled up like a clean kitten, soaking up the peace.
I’m usually more empathetic. If I could have thought of something to help, I’d have been glad to do it. Perhaps we’ll think of something next time.
At the heartless core of my practical brain, though, I found the thought that they get the evenings that make them comfortable almost all the time — only two evenings out of the past five months haven’t been fully electrified.
I only had one evening so far this winter that was great for me. I was going to make the most of it.
I stretched out in my super comfy spot and purred.