As the title hints, it’s been another fascinating visit with my pain diagnostician.
His current working diagnosis is fibromyalgia, which he characterizes as being capable of throwing some hairy curve balls (my terminology, not his) including the growing litany of food sensitivities, which solves a major problem in my mind.
Thyroid disease can also trigger the symptom complex that otherwise gets tagged “fibromyalgia” (more on symptom complexes in a minute.) I mentioned that I’ve had my thyroid checked several times and last year came up with Hashimoto’s (meaning my immune system is attacking on my thyroid.) Since I developed the first symptoms of this central sensitization around 16 years ago, it seems not like a precipitating event; since “normal” thyroid activity is not the most meaningful term, I’m not sure it’s irrelevant. I guess I’ll learn more as we go on.
He’s also checking my hemoglobin A1c to check for underlying blood sugar instability. I’m always happy to check that. Also B12 (pernicious anemia etc.) and D3.
Now we come to the fascinating (and crucial) distinction between a symptom complex and a disease. Both are used as diagnoses, but they mean different things. (Yes, I’ve used the word “disease” indescriminately here, for simplicity.) Medically speaking, a disease has a cause that can be targeted, what you might call a diagnostic end-point. A symptom complex doesn’t have that level of targeted responsibility for the illness; it’s a consistent set of symptoms that cluster together often enough to get a diagnostic label, which takes some doing.
Here are the two scenarios.
On the one hand, you’ve got someone with a lot of pain, funky guts, sensory reactivity, and normal labs. The doctor (we hope) rules out any other possible cause, and decides the diagnosis is, say, Fibromyalgia. This is a symptom complex, because it’s described in terms of what it does to the person, not in terms of specific pathogens or organs as the causative thingy. (I’m tired; thingy will do.)
On the other, you’ve got someone with a lot of pain, funky guts, sensory reactivity, and thyroid labs that are out of whack. Further examination of the thyroid discovers specific thyroid abnormalities which can be treated. With treatment, the symptoms subside or even disappear. The diagnosis is the disease of hypothyroidism, with a diagnostic end-point in an organ (as in this case) or pathogen.
CRPS/RSD, Fibromyalgia, and some other hideous conditions are symptom complexes. This is used by some as a reason not to “believe in” those conditions, because they aren’t “real.” This is intellectually dishonest, but it does no good to tell them that; assuming that a lack of diagnostic end-point equals lack of ill-health is blatantly absurd, but this is a reality we must contend with. It’s a drawback of having such a flexible language as English, where the same word can mean different things from one context to the next: in Plain English, disease and illness are interchangeable, but in Medical Jargon, they’re definitely different: disease means specific diagnostic end-point, illness tends to suggest a pathogen, and condition is the catch-all term — but is used more for things that really aren’t diseases or illnesses. Another example on a hot issue: in medicine, narcotic refers specifically to opioid analgesics; in law enforcement, it’s a MUCH wider term, encompassing any substance that legislators have decided is not legal. In courts, the meaning of the term has to change depending on who’s involved, which has to be weird.
No wonder there’s confusion around anything medical. What a setup, eh?
This brings us to the physician ethical structure this doc works with, and where it fits into this patient’s worldview. You can almost hear me purring comfortably from here.
He speaks of himself as a Palliative Care specialist. Most people think of Hospice when they hear palliative care, but it’s wider and simpler than that. It means this physician has chosen a field defined by the fact that his patients will probably never recover. That’s what palliative care means: keeping the patient as comfortable and functional as possible, for the rest of their (probably, but not necessarily, truncated) lives.
Yeah, pretty darn special. How many of you who see pain docs hear them use the term “palliative care” naturally and fluidly, without wincing and scuttling on? It’s a little thing that means a lot. It makes me realize I’m seeing a doctor who CAN be there for the long haul, if need be. Someone who would NOT throw me off with the very natural cringe of frustration and failure most docs feel when they can’t save you, or when you’re in the final downhill slide and they can’t face you dying. He can take that strain without failing me. That’s rare indeed.
Palliative care is the very heart of chronic pain care, and I couldn’t face that myself until today.
So now I just have to die before he retires…
I’d like to go over his approach more, but the fog is descending; it was an early morning and I’m paying for it as usual. I’ve got lots of notes, though. It’s great food for thought, so, with luck, I’ll come back to it.
While I was mulling the constancy of nausea and yuckiness, looking for a reason more useful than “it’s winter”, I realized I had relentless cascades of post-nasal drip.
The stomach isn’t too fond of relentless cascades of post-nasal drip, because the glucoprotein complex generically called “mucus”, which we usually call “snot”, is not that easy to digest. It’s not really meant to be digested; it’s meant to do its job (picking up and trapping obnoxious particles or germs or what-have-you) and then get blown out. It’s not supposed to roll into the tummy in a never-ending stream.
I was reading up on GI issues (as one does) and stumbled across a piece which said something like, “Stay away from nuts and seeds entirely. The oil is rancid by the time it gets to you and that rancidity is poison to the systems of people who have leaky guts and sensitized systems. You can usually tell because the immune reaction affects your sinuses and causes lots of extra mucus.” If you’re curious, this article was about the GAPS diet and explained the whats and whys.
I threw my hands up in exasperation and disgust. I relied on nut and seed butters to start my day, because they cut the morning pain down to a quite bearable level and gave me a bit of protein that didn’t bring my stomach up in revolt. My mornings are tough enough and this info just pissed me off.
The next morning, I woke up noticing that I didn’t have post-nasal drip. Nice. Then I started on my morning breakfast of apple (malic acid helps the pain ease off too) and sunflower or almond butter (I forget which.)
Two bites…. then a relentless cascade of post-nasal drip.
My first thoughts were mostly expletives. Totally unprintable in a family-friendly blog.
I went off the rails a bit. I’ve been dealing with this disease complex for nigh on 15 years now and I have evolved a pretty limited (and not cheap) diet to manage it. Rather than thinking, “Oh great, a good clue as to what I can do to improve things!” I mentally roared, “WHAT THE BLEEDING HECK CAN I EAT ANYWAY????”
– Genetically-determined mild allergy to white beans. That means soy, chick peas (which wipes out hummus and much Indian food), most multi-bean soups and salads.
– Roaring neurologic gluten response, which in my case spills over into related molecules. This means: no wheat, barley, triticale, rye, oats — in fact, most grains; nor fresh milk, soft cheese, dairy ice cream; and eggs only in strict moderation.
– Hashimoto’s disease means my body is chewing up my thyroid. This means definitely no soy, but also, no broccoli, chard, kale, bok choy, cauliflower — no cabbage/brassicas of any kind — and that’s an awful lot of vegetables not to have as an option, including most winter veg. And yet, I need lots of vegetables and happen to like all of those. Even in small amounts, brassicas can squash thyroid response. It’s very sad.
– Candida/c.diff overgrowth, which means no sugars (not even unrefined honey or maple syrup, not even low-glycemic stuff like agave [which makes me cramp] or maltose), no rice, minimal fruit, no juice, no root starch (too high in sugars) or white starch of any kind (if I’m doing this diligently) which wipes out the potato family and remaining grains except amaranth (I can’t digest quinoa at all, so it’s not even an option.) Then there are the limitations that are less obvious, which means, no tea or coffee, no vinegar or cultured food (if I followed that parameter, I’d be unable to digest anything and my guts would be even worse), no artificial anything because they tend to be grown on yeast or malt slurries (which is fine because packaged foods tend to happen to other people, not me.)
– The constant immune-y fuss means I should probably be more diligent about the inflammatory culprits: tomatos, eggplant, potatos, peppers, the whole belladonna group. I LOVE those things. Also, no canned foods, because the trace amounts of preservative stuff are so neurotoxic that molecules matter to my body, and homemade canned stuff can still grow trace amounts of the fungusy-yeasty stuff that boots me back into candida territory.
– Now, no nuts or seeds. At all. Possibly no cooking oil. I was diligent about getting the freshest and checking best-by dates and inspecting the packaging, for the candida reason. Not enough any more. No nuts or seeds at all.
I think i’m down to squashes, lettuce, and incredibly expensive pastured/wild flesh foods. Oh, and grassfed (Kerrygold) butter. I can put that on the squash, I guess.
To be frank, I haven’t been very diligent about eliminating the root veg and I’ve had some broccoli and cauli lately, because it’s freaking winter and I’ve needed to eat something that’s available.
Since reading about the nuts/seeds thing, I totally fell off the rails. No gluten, because I’d rather die than go through all that again, but I’ve gone to town on sweets, rice, vinegar, ice cream, root veg, brassicas, belladonnas — everything but nuts and seeds.
Paying the price for it, too… as one does.
Two nights ago, I made myself a new bedtime meditation recording, designed to rebuild my own mental core. I’ve just about had it with trying to cope with the world (if you have one eye on US politics, you’ll understand that well enough, especially if you have friends and family who are losing care due to political brangling, losing property due to corporate gamesmanship, or losing their liberty due to being not-White); add to that some family crises of illness and a bereavement in the extended family, and… yeah.) I’ve reached March feeling absolutely shredded inside.
And then…. NUTS!
Lately and increasingly, my brain was really resisting the relaxation response training — which is very odd for me — and I was having nightmares and waking up 5 times a night. I thought that, if I backed off the calming exercises and instead re-integrated my core self, that would make more sense than trying to pretend everything’s all right for half an hour. I have no idea what that looks like for other people, but I have a pretty good idea what it looks like for me. So, I made a recording with a series of mental/imaginative exercises that boil down to my individualized psychological structural support.
The chaos and rage are abating, which is just as well, because I have a follow-up appointment with my pain specialist tomorrow. I’m calming myself down with this article before turning my fragile attention to encapsulating the physical fallout and revelations of this winter in a coherent patient update.
I get to tell him that I’m seeing the GI specialist later this week, and that I have tested marginally positive in a screening test for mold toxicity, so more blood tests are coming from my allergist. That would actually explain a lot, but I’m not sure where he stands on the subject. Mold toxicity, as a driver of illness, is one of those things where the physician’s belief-state has more bearing on care than the coherent, consistent, verifiable facts of the patient’s disease-state — in that respect, it’s like chronic fatigue, neurogenic pain, and most immune disorders. Familiar territory to many of us.
A few days ago, I apologized to J for being such a piece of work lately. I told him I’ve been ill and in more pain than usual. He said, with the kindest intentions, “Well, it’s hard to act right when you’re sick. You have to feel good.”
I said, “I never get to feel good. It’s just different levels of –” (waved my arm expressively.) “I usually do a pretty good job of managing myself anyway.” He agreed, bless him.
That first phrase, “I never get to feel good,” has been preying on my mind. But then, it’s winter. This will pass, and I’ll find it easier to put my focus where it belongs — on what I CAN do, CAN eat, CAN feel, that’s not so — (wave my arm expressively.)
Until then, I’ll keep breathing, keep making my appointments, keep tending my relationships as well as possible, keep up on my documentation, keep on keeping on. As one does.
Fortunately for all of us, the blogger at Elle and the Autognome has done a good job of laying out the basics and providing a starting-point for figuring out how to manage it in individual cases — because we’re all different, and we have to figure out what works in our particular bodies. So, rather than waiting for me to get it together on this topic, I’m going to punt to her.
* For the record, “central nervous system sensitization” is a collective term for the diseases characterized by CNS up-regulation of essential neural signals, notably pain but also a whole garbage-can of signaling misbehavior that goes with that. These diseases include CRPS, fibromyalgia, chronic fatigue, multiple sclerosis, lupus. chronic Lyme, and so on.
I have written about dealing with careless, ignorant, detached, and outright bad doctors, which is needful and — given the many problematic layers of living with chronic, intransigent pain — appropriate. However, I’m also a nurse, and I really do see things from both sides.
You’re both right.
Having said that, I normally have to pull for the patients, because only one person in that exam room is definitely NOT paid to be there and is NOT on duty, and it’s the one seeking care.
Patients need more advocacy, partly because few of us have the vocabulary to make our real needs and issues understood, and partly because the mere label “patient” instantly drops a person out of the realm of “real human being” in the minds of providers. If you’ve ever seen, or been, a doctor or nurse who needs medical or surgical care, you know darn well how your erstwhile colleagues speak to you differently from how they did before — but still more humanely than they do to most other “patients.”
Being labeled a “patient” is damning. You become a thing, a self-steering talking object, with only a surface resemblance to “real” people. Your main appearance in the eyes of the system, and, at some level, of those who work in it, is as a collection of problems. Your main purpose is to respond to treatment and go away cured.
Chronic intractable pain syndromes become zero-sum games from this standpoint, because pain is inherently demanding — even thinking about pain is painful!*1 — and managing these disease states rarely involves being able to “go away cured.” So, from this institutionalized standpoint, chronic pain patients are set up as failures from the start, because we can’t do our job — go away cured.
Explains a lot, doesn’t it! This unfortunate fact is simply one more thing to work around.
Those of us with intransigent pain syndromes are lucky in one respect — we have interesting sets of problems, and intelligent doctors find that intriguing! Appealing to their curiosity is often more effective than appealing to their humanity, because it gets them where they work best.
A nurse who’s a patient
It has taken many years of painfully humiliating introspection for me to come to terms with this basic dehumanization of patienthood. I was a good, solid, compassionate nurse, but I did not treat people who came under my care the way I would have treated my friends or relatives if they were in my care.
Many reasons for that. For one thing, the profit-driven scheduling doesn’t allow time for anything more than slinging meds and essential care; spending too much time with one patient means putting other patients at risk.
Beyond that, there’s a primal survival reflex involved, because there are things nurses have to do for patients that would be unbearable to do to a friend or relative.
We have to do all of them, thoroughly and without flinching, because they need doing in order for that patient to heal; and we still must be able to come back to work the next day. So, we create a little distance that we can do the work from.
Patients are Other. When they become too human, they can quickly become embarrassing, and every human on earth cringes away from what’s embarrassing. (Just as every human on earth cringes away from what’s painful, and this explains why we tend to get abandoned by our friends and by the system when our pain becomes too obvious for them to bear. That, in turn, is why we get so crazy-good at minimizing the appearance of being in pain; we don’t like the abandonment, and we don’t want to hurt those around us anyway.)
Speaking as a patient and long-term survivor, starting from the underdog position is a terrible position to negotiate your ongoing survival from.
So, I spend most of my time advocating for and educating my fellow patients. They’re the ones who need it most.
However, once in awhile, something hits me, and I feel a point needs to be made.
Doctors (and other care providers)
This article is a good little anecdote from the ER, my old base:
And that, right there, is the juggling-act providers have to do. The decent ones, which is most of them (really), put their hearts on the line every day, knowing they’re imperfect and doing their best anyway.
When I was doing something intense, like dressing a complex wound or teaching someone about their disease or (obviously) coding someone, that patient was the most important person in my life. I threw everything I had, with all the control and skill I had, into the moment-by-moment demands of their care, the whole time that they needed me.
That patient was my life.
Then, whether they lived or died, I had to arrange what happened next, clean up the mess, and leave the bedside, only to go to the bedside of someone who needed me perhaps just as badly in a wholly different way.
No matter what had just happened, after all that effort and dedication, I had to leave it behind and be ready and focused to correctly identify and move forward with the next patient’s tasks.
So, yes, I rarely came off as a fluffy cuddle-bear (which I tend to do at home), and a lot of my responses could be pretty formulaic, but when the chips were down, “he [still] wasn’t my child.” He, or she, or they, was my whole world.
Being able to turn away from that intensity is what makes it possible to turn back to it at need. That’s a tough thing to deal with when you’re on the wrong end of it, when you’re not the one dying on the table or getting your insides pulled about. You know you matter, and want to be treated as if you do. That’s right and proper. It might be too much to ask of a full-time RN. (There is definitely something weird about that.)
Nurses are the bedside providers. Physicians are the directors of care, deciding who goes where and why. They’re accustomed to deciding what happens, and expecting others to make it so, so that the patient can get better and go home.
Chronic care is always a long game, sometimes a waiting game, and doctors are dealing with people who simply can’t do what the doctor’s expensive education said was the doctor’s job: “send them away cured.” This means that the chronic care provider is also set up as a failure from the start, as some have found the grace and integrity to express. *2
This must be a special kind of tricky to learn to deal with, so it doesn’t surprise me that not many otherwise good-hearted people, who go into medicine for laudable reasons, don’t always manage it with the tact and decency that chronic patients (rightly) expect.
In that case, it’s not a bad idea to find a way to waft this article their way… It’s not judgmental, and it provides much food for thought, for physicians and patients alike:
As a side-note, one strategy I find useful for getting through the thing-ness of being a collection of probl– er, a patient, is being as pleasant and amusing as possible. This creates a safe-zone of humor while drawing the provider in past the boundary of “thing-ness” I’m reflexively put in. The wry, black-nailed, hangman’s humor of living with something so vile and refusing to let it win, coming out in my burbling and whimsical-sounding tones, is probably sufficiently unexpected to blow categories out for the moment anyway.
If I can make them laugh with me (while checking me out with a puzzled “are you serious?” kind of glance) I’m halfway to being human in their eyes, and still being treatable. Then, I just keep up with my due diligence (timelines of care, understanding my treatment options, studying up on things we’ve discussed, etc.) and — with the exception of one doctor out of two dozen, who I thought was a buffoon in any case — my relationships with my doctors have been remarkably good.
“Never give up. Never surrender.”
Leonidas of Sparta, Jael the wife of Heber, Alexander the Great, Queen Boudicca, Mary Magdalen, the Prophet Mohammed, Hildegaard of Bingen, Vlad the Impaler, Queen Isabel of Spain, Geronimo, Copernicus, Marie Curie, Winston Churchill, Aung Suun Kyi, Terry Pratchett, the 14th and Final Dalai Lama…
Rest and retreat, yes.
Pause for thought, please (unlike some of those listed above.)
Knowing when to acquire a sense of proportion, ideally (again, unlike some of those listed above.)
But… don’t give up. Don’t give your rightful self away.
It’s always been easy for me to be determined, but not easy to pick the right things to be determined about.
In my 20’s, I wanted to save the world.
In my 30’s, I was willing to work only on that part of it that wanted my saving.
In most of my 40’s, I was dying — sometimes by inches, sometimes by yards — and couldn’t quite save myself.
I’m 50; what a relief!
Given that trajectory, it’s no wonder that my priorities have shifted a little.
I figure that, as long as I have working pulse and respirations, I’ve got a job to do. (I suspect everyone does, but I could be wrong.) My particular job is to re-possess my physical self, and, given enough slack, help others to re-possess theirs.
Our bodies are not just machines, despite the inherent dis-inheritance proposed by Descartes (considering the body a separate entity from awareness), and the even more extreme model funded and fomented by a slightly misguided Hearst (who fell in love with interventionism, and drove the mechanical-problem-to-be-fixed model of medicine over the shifting-dysfunction-to-right-function model of medicine.)
Bodies are the media we experience life through, the means we have to respond with. Despite the relentlessly shallow concerns over appearance the media saturates our lives with, our fundamental experiences of life are not just seen. Life is an all-body experience.
Bodies are marvelously self-aware organisms on an enduring quest to care for and maintain themselves by communicating as effectively as possible within themselves, and responding as usefully as possible at every level — within the cells, between the cells, from cells to organs and back again — with the marvelously alert circuitry of the nervous system and the dazzlingly subtle chemical dance of the endocrine system drawing the whole show together.
That’s a bit more complex than just meat-sacks wrapped in hide.
I’ve been mulling the twined facts that my body is an amazingly tough, brilliantly adaptable organism, and at the same time, is an organism constantly under sieges both subtle and overwhelming. Yet it never stops trying to find a useful set of responses, it never stops signaling and listening.
It never gives up. It has never surrendered.
I admire that.
Just for grits and shins, here are a few other things that I mutter to myself over and over.
C’mon, you can do it.
Motion is lotion.
Use it or lose it.
Change or die.
That’s quite a set, when I look at it laid out like that.
Not all of them are cheerful. Sorry.
They’re all thoroughly grounded in my reality, though, and they all have had something to do with my getting this far. They are hammers and screwdrivers in my mental toolkit of radical presence, pushing back on neuroplasticity, and not settling for what this disease would leave me.
Naturally, I say these things to myself in tones of firm, loving parental authority, since it’s all about re-re-plasticizing my brain, and those are the tones it responds to.
FTR, I’m sincerely glad it responds at all. When I was in nursing school, they told us adult brains were fixed for life. I doubted that from the start, and events eventually caught up with my skepticism. Brain plasticity FTW!
Add to that a disease nobody understands without years of serious effort; unbelievable pain; weird deficits (sound volume? Vibration? Time in the shower? Crowds and excitement? How weird is it that that stuff can make us so much sicker, eh?); forgetfulness; loss of perceptions that tell us about social cues; distorted sense of touch; and above all the improbable wobbles, waxing-and-waning, and variations in every dimension… and we could have a recipe for disaster — and occasionally do.
I’ve lost a job, some hard-earned professional respect from my peers, an excellent friend in the making, and several medium-close friends whose presence I still miss, due purely to the effects of the disease.
Kinda sucks, eh?
And I’m definitely one of the lucky ones!
Over the years, I’ve developed a handful of personal guidelines. Key to every one of them is this: I’d rather be effective than right.
What does that have to do with taking care of relationships? (Yeah, kind of a trick question. I can hear many of you shout, “Everything, duh!”)
Life is not fair, this kind of illness is not fair, and there is nothing in this world that can make it fair. Being sick like this is just fundamentally wrong, a vile distortion of life and of fairness — but that doesn’t mean I no longer have a life or that I lose my own sense of fairness.
That, folks, is where the real power of “living anyway” comes in — of doing the imp-possible with character and flair. Life is not fair, but I can still be generous (when it’s reasonable), and to heck with the unfairness anyway. This disease is vile, but I can still be pleasant (most of the time), and to heck with the vileness anyway. Imp-possible WIN!
So, here is my list of personal guidelines for tending the relationships that matter:
1. Nobody shall be worse off for helping me.
Corollary: Be truly grateful, without groveling, when they do.
Reminder: This trumps short-term survival. If I let someone be worse off for helping me, things get very bad very quickly. Don’t go there, ever again.
2. My problems are my own.
Corollary: Help is precious.
Reminder: Treat those who give it accordingly.
3. No, normal people don’t understand.
Corollary: Nor should they!
Reminder: Bless those who try; they are gold.
4. It’s hard to reach out and stay in touch. Do it anyway.
Corollary: The payoff is worth many times the effort, over time.
Reminder: I feel better after hanging up than I did when I was dialing, ~90% of the time.
5. People say more than they can do, not less.
Corollary 1: Don’t believe them when they sound generous.
Corollary 2: Believe them when they state their limits.
Reminder: Be grateful for the more painful information, and courteous about the generous lies. This has led to more subsequent real help (mostly from the curmudgeons) than anything other than #1.
6. I could be wrong.
Corollary: I might not be.
Reminder: Is that what matters?
7. Every New Year, think over two things for the coming year, because these are the only resolutions that matter: i. What do I need to work on to take better care of myself? ii. What do I need to work on to take better care of my relationships?
Corollary: It’s okay to make the same resolution as many times as necessary.
Reminder: Celebrate having made another year!
I’m not kidding. I really do all that. It’s a constant practice, of course. I have to constantly check and recheck and remind myself of each thing on the list, especially if I’ve been slipping. The point of a practice, of course, is that it’s a work in progress — like life.
It takes a lot of humility to abide by these guidelines, and, believe me, humility doesn’t come naturally — I’m genetically wired for its opposite. (You should meet my folks: gifted, glorious, hilarious, adorable, and unselfconsciously smug, every one of them!)
Having said that, the value of what comes from the humility sure is worth the effort, even though it’s overwhelmingly difficult at times.
I intended to go into these guidelines in more detail (explanations, expansions, maybe a few links to science articles to back up an assertion or three), but I find I’m running out of steam and don’t want to leave this theme — again. I’ve got several drafts with a similar title, and couldn’t hammer any of them into shape for a post.
The brutal challenges we have with maintaining relationships really need to be addressed (however brief this is, it’s still something), so you might as well dig into this and comment on what you think about this, what guidelines you’ve come up with for yourself, why you think these might be valuable or not. I love it when you share your thoughts and experiences here.
There are two things I wanted to discuss, which I’ll just drop here and leave for further comments and conversation.
Taking responsibility is not the same as taking blame. This is a very powerful idea. (It’s okay to say, “I’m taking responsibility. I’m not interested in blame.” This shifts focus for everyone involved.) This is particularly important in relation to #1, 4, and 6.
Everybody has their limits. My relationships only work and grow when I respect others’ limits, whether or not they can respect mine. (I can’t do anything about them, but I can do something about me. Moreover, when I give them this slack, people tend to move through their mess and become more considerate in time.) Particularly relevant for #1, 2, 3, and 5.
There’s always an afterwards. I developed these guidelines in light of what tended to leave the most useful “afterwards”, because I intend to be around and continuing to beat the odds for a long time.
This is from one of my Isypedia-type replies to someone with a dreadful case of clostridium difficile (commonly known as c.diff) who had been told to use antibacterial soap to wash.
NB: This is not an opportunity to argue about antibacterial soap, but a sharing of experience from someone who was on the front lines of the “soap revolution” over a quarter of a century ago.
A word from an old nurse on this question, one with leaky gut, bouts of multi-system candidiasis, and assorted other gut issues, as well as c. diff …
About c. diff
C. diff is common in hospitals and is an opportunistic infection. (Doctors carry it from bed to bed on their white coats, and few of them even wash the darn things more than once a month. This is disgusting.) Once it’s in you, it hibernates, and comes out in flares periodically, usually when you’re stressed out or when your immune system is down. There’s no question of curing it, but of suppressing it and managing outbreaks.
Healthy gut flora are the first, best line of defense. They simply crowd it out and leave no room for it to grow. A normally healthy person might do fine with eating yogurt, but those of us with chronic or profound illnesses usually can’t meet their needs this way. We need the big guns because our gut flora are likely to be very weak,very few, or both.
There are some great probiotics out there. Good brands are pretty numerous. They include Jarrow, Garden of Life/RAW Vitamin Code (my personal favorite), and Ortho Molecular Products. I use the RAW Vitamin Code 5-day Intensive product for 2 weeks at a time, when I need to reboot my gut. Recently, I had candidiasis and c.diff flare up simultaneously, so I’m using the Ortho Molecular Pro Biotic 225 (tastes weird, so I mix with juice to cut the funk) for 2 weeks and then I’ll do a round of the RAW Intensive (which has a much broader spectrum of organisms, something my body really needs for maintenance — the longer a person has CRPS, the fewer gut species that person has, oddly enough) for 10 days or so.
I get these products on Amazon or at Vitacost.com, where they can usually be found at near-wholesale prices.
About the social and practical aspects of soap
Men have trouble with soap. (I’ve had to teach males of every age to wash their hands for dressing changes or eye care, so yes, I can confirm it absolutely.)
It doesn’t mean they aren’t capable of using it well, any more than women are incapable of lifting weights; they just have to put a little more effort into it, but almost all of them are capable of becoming very capable.
No, really, it’s true. They can. They just have to put a bit more work into it.
Where possible, many men would much rather have a toxin or tool to do the cleaning job for them — hence sonic cleaners and autoclaves for equipment, and benzalkonium chloride or alcohol cleaners for the skin of male responders and providers.
These aren’t as good as soap and water. Notably, alcohol cleaners, which are widely used in hospitals and do kill many germs, don’t even touch c.diff — a peculiarly hospital-based pathogen.
These products are considered good enough, and are certainly a great deal better than nothing at all.
If men (at least, US men) have to use soap, though, it seems easier for them to think about if it’s a tool-ish sort of soap — Gojo (by every mechanic’s sink, next to a fossilized bar), Lava soap (which feels like dirt and has powdered rocks in it), or antibacterial soap (which sounds medical, and therefore like a specialized tool.)
That’s a lot of needless expense. Also, and more importantly for the purposes of this blog, it’s becoming clearer that there are toxicity issues with antibacterial soaps which affect men as much as women and children.
How to clean your skin so well at home, only a surgical scrub could be better
Whatever body part you’re washing, whether it’s hands or what the medical profession delicately refers to as the “peri area” (Latinists, look away from that) and what most Americans call “the crotch”, there is a very simple way to get as clean as you can, short of a surgical prep.
Here’s the magic:
20 seconds by the clock(you’d be amazed how long that really is) with regular hand or body soap,
On your hands, from nails to wrist; Between your legs, from front to back; In both cases, right through all the crevices and any wobbly bits,
Then rinsing well afterwards,
This process will get you as clean as, or cleaner than, any amount of antibacterial soap, without the side effects. That’s what the independent science says, over and over, plain and simple.
The problem is, of course, that most people (especially men) have trouble spending that much time with soap and water.
Personally, I do a quick pass with soap to get the worst of the stinkies off, and then do a second and sometimes a third pass, front to back. I do this every time I shower, and when I’m too sick to shower but can still stand up at the sink to wash. It adds up to 20 seconds, usually closer to 30. My nurse’s nose finds my sick-body smells distressing, so I like to clean them off completely.
When I’m really not up to washing well for at least 5 days out of the week, that’s when the troubles start. Usually, diet and hygiene keeps my gut content, but I recently got a virus and then a long pain-flare and that put me down for over a week of very little proper washing — plus, of course, diminished immunity. That’s probably what led to the multiple gut flares. (They’re much better now, thank you.)
Making the right choice for you
Bottom line is this… IF you can trust yourself to really clean yourself properly, which means 20 seconds of soap (in 1, 2, or 3 increments at a time, as long as it’s 20 seconds total), then ordinary, nontoxic soap is just fine.
If you can’t trust yourself to do that, then yes, you need the extra killing effect that the antibiotic soap can have on pathogens, and will have to risk the consequences.
For triclosan and its relatives, this includes muscle wasting, dose-dependent (the more you use it, the worse it gets); for most others, it includes moodiness, suppressed immunity, more skin issues, and all the stuff that goes with endocrine disruption — possible neurological issues like pins-&-needles and faulty neuro, endocrine, and hormonal responses. (You have to watch the medical science closely to find some of those things, because they rarely make it into the mainstream press. Bad for business.)
And that, ladies and germymen, is the lowdown on how to choose soap.
I’m going through one of those periods where I’m just tired of my body hurting.
This is one of those offhand remarks that makes fellow painiacs nod understandingly, offer a kind look or emoji, and move on, but it makes normal (-ish) people with good social skills cringe and stops the conversation in its tracks.
I don’t want to make nice people cringe, and I don’t want to kill the conversation. I was recently reminded how hard it can be to avoid that while answering “how are you/what have you been doing” with any honesty. In fact, I find myself talking about most of the past 20 years in terms of not getting dead.
I think that’s a hoot, because it’s so improbable and so much against my initial setup and programming. (I have a truly dreadful hangman’s humor.)
Needless to say, most people think it just sounds grim.
My setup and programming
I’m the offspring of a diplomat and a working artist, well-traveled and extremely well-educated, Seven Sisters undergrad… until I went off-road and became something totally bourgeois and practical (a registered nurse) and, when my immune system conked out for no apparent reason, went on to become something nouveau and nerdy (a writer documenting high-end programming software.)
It was a sweet setup: good brain, strong body, great start to a useful life, good plan B when plan A failed.
Eventually, this promising start led (via surgical complications, neurological disruption, extensive worker’s comp and SSDI abuses, failures of care and denials of treatment, tediously protracted near-death experiences — a term I’m longing to refine — and years so close to utter destitution I refused to look at dumpsters because I knew I was not far from winding up in 2 or 3 of them simultaneously, like the other invisibly disabled woman of my age, build, and coloring who landed on the streets of Oakland) to my utter destruction as a professional entity.
That was definitely not in any of the scripts my life was supposed to follow!
My childhood friends now have their own businesses, pocket palaces, successful careers in the arts (most), policy/diplomacy/public service (some), and STEM (a few), and in raising children with little concern for whether they can feed them. I’m deeply relieved and happy for them, while realizing that my own life-path got so completely hijacked I have no idea what I’d be doing if it hadn’t been for this.
I bet I’d be complaining more, but I’d be doing more too. I wouldn’t be hurting this much for decades, if ever, and even then, only if I had terminal cancer.
Which brings us to a key point: to discriminate against the disabled is to discriminate against your future self. We’re all getting older; with more lifespan come more proofs of mortality, which include reductions of function, stamina, mobility, and even memory and reasoning.
These, folks, are disabilities, and either they will happen to you or you will be a premature death statistic. There’s no third option.
This is why, when you discriminate against the disabled, you discriminate against your future self — and all those you love.
I wish legislators had the humility to remember that. Perhaps you’ll remind them… Find yours at www.usa.gov.
Where was I? Oh yes.
How do I talk about the last 20 years, especially the last 15, with a person who hasn’t spent an appreciable part of life dancing with Death and occasionally taking the lead?
How can I convey how incredibly marvelous it is to have a minimum of 2 functional hours — consecutive hours! That’s thrilling! — nearly every single day? And yet, I used to work 10 or 12 hours at at time for preference because I loved immersing myself in the work.
In comparison to that, isn’t 2 hours pathetic? Especially because I did very demanding work, and 2 hours of noodling around in the yard or walking around downtown really doesn’t compare.
It makes me realize how long it’s been since I even thought about the razor-wire-bound memories of “how I used to be” and “what I used to do.”
I compare only as far back to 2008-2012, the pit of the pit, the nadir of my existence.
Compared to that, I’m fantastic! Being fantastic is a great thought!
Being at maybe 10% of my youthful vigor is actually amazing, because during that time, I went from being so close to dead it took 25 to 30 minutes to drag myself, fist over fist, all 6 feet from my bed to the other end of the settee, to feed the cat in the morning. I think that level of function (or nonfunction) is a percentage of my youthful vigor that’s several digits to the right of the decimal. It felt like a negative number, that’s all I can say for sure.
There’s nothing I can do about the past, only the future. That’s not pathetic, it’s just life.
Actually, I feel that way about most of this chronic-illness gig. It’s not pathetic, it’s just life.
The power of “use it or lose it” as a tool under your control
The trick to living with chronic illness is twofold:
Figure out what it takes to manage your illness without letting it take up all your focus. It does not belong in center stage, or not often anyway. Life belongs in center stage. Figure out how to make it so.
Figure out how to have a routine, some sort of rational approach to every day. It’s all too easy to lie back and let the world go by. Speaking as an old nurse, I know the immovable truth of the old adage, “use it or lose it.” Having a routine stabilizes the body’s coping mechanisms; knowing what to expect soothes the central nervous system and simplifies healing. So, make a routine; decide what happens next. Make yourself do things, alternating activity and rest. Use your body, use your mind, rest, then use different aspects of your body, different aspects of your mind, rest, and so on.
These two strategies allow me to make more room, more time, and have more attention, for joy.
Joy is not a luxury; it’s essential to proper function.
The gut, brain, immunity, everything, are worse off when there is no room for joy. Whether I can appreciate my partner, the sunshine, a lolcat, whatever, I grab each opportunity for a shot of delight. I call those bursts of joy “brain juice”, because they boost useful neurotransmitter patterns and, cumulatively, reduce my pain and improve my function.
Bit by bit, even as age creeps up and new issues arise, I find myself better and better able to make use of what I still have. In fact, over the last year, with safety and sanity finally framing my existence, I’ve regained an amazing amount of function. I’m so pleased! (Oo! More brain juice!)
I still don’t know how to explain this to a normally healthy person without sounding like something from another realm of existence.
Different is probably fine
Perhaps I am from another realm of existence.
I’m certainly from another realm of experience; longstanding profound illness is special like that.
Perhaps I simply need to get over this idea that, just because I’m back home or just because I’m talking to someone who knew me when I was an arrogant young jerk and saw beyond that to someone worth liking, I should fit in with them.
Perhaps I should have more faith in myself to be interesting and likeable enough to shine through even the CRPS. I clearly shone through the old arrogance and jerkiness, somehow.
I’m far less confident, eloquent (in person), and humorous — at least, less intentionally humorous — than I was in my 20s or 30s, but I’m a whole lot more confident, eloquent, and (occasionally intentionally) humorous than I was a few years ago.
So, I need to remember to keep my focus relevant, and not think too far back.
Emotional boundaries: My pain shouldn’t be your pain
There’s a trick to disclosing without wounding, even when what you’re disclosing is tremendously difficult. Good boundaries are key.
You may have noticed… people tend to pull away from pain. It’s an ancient reaction that happens in the most primitive parts of our central nervous systems. That means, when we’re too raw about our pain, others may pull away from us because that primitive response combines with their emotions around pain, and our pain makes them hurt emotionally.
I remember how I used to open with the idea that my pain is my pain and others don’t need to imagine it or take it on.
This approach of “it’s not your pain, so let it go” frees many people up to re-engage from a rational distance which works for both of us. It’s important to give others the distance they need, because then they don’t feel a need to pull back further to protect themselves, and can stay in contact. They don’t feel driven to pull away from all that pain.
Each of us, well or ill, has to carry our own load, and really isn’t equipped to take on others’ loads as well. I try to remember that and respect the loads of others. It usually works out well.
Come to think of it, it’s essential to relationship maintenance.
Taking it on vs. bearing witness
When I was a nurse, I dealt with harrowing human experiences all the time. I could handle it with real care, and go back next day and do it all again, because I was clear that my load was my load and their load was their load, and the most healing and empowering thing to do for another person is to bear witness to their struggle without trying to take over. The one with the struggle is the one best qualified to find their best solutions; having that implicit faith in them, I found, is tremendously powerful.
For those of us in dreadful situations, we don’t get to choose the reaction others have to our struggles. All we can do is try to back-lead, essentially, guiding them tactfully to a more comfortable position.
Allowing well-intended people to bear witness in a safe way is a natural outlet for the sympathy and compassion evoked in decent people. Letting them get sucked into the awfulness doesn’t help anyone.
Put that way, it’s a lot more clear to me. It’s another form of radical presence/radical acceptance, a mental tool which boils down to, “Things may suck right now, but here I am, it is what it is, and this will pass.” Try it — you’ll be amazed how much mental energy it frees up.
The approach for discussing my illness with others may go more like, “It sucked then and it sucks now, but the worst suckage is behind me, it gave me great opportunities for growth and I took ’em. At this point, I’m better at looking ahead than looking behind, and hey, I’ve got interesting projects going…”
So, first I should clarify the needful boundary between my personal load and the rest of the world, and then I can discuss all this with some detachment from the gluey-ness of remembered distress, unbelievable losses, and intransigent pain, and best of all I can point the conversation towards something much more positive.
I’m still not sure exactly how to do that, but I’ll practice.
I’m definitely better at looking ahead!
Well, I don’t know about you, but I feel a lot better about this already. I’m grateful for your company as I figure out my rubric for yet another tricky twist of the Rubik’s cube of life.
Here’s my Doctor Appointment Optimization strategy. This is especially important for new diagnoses, new doctors, and any significant change or comcern you have.
– Between now and your appointment, keep a pad handy and note down anything you want to find out when you see the doc.
– A day or two before the appointment, set up your documentation. Lay those questions out so you have room to write the answers (in printout or on a notepad, whatever works for you.) Also, if it’s relevant or might be helpful, make a current Snapshot to show the doctor. Make copies of whatever science articles or studies you want to share.
– If it’s a first appointment with a new doc, also print out your current Timeline and previous Snapshots so he or she can absorb your info more accurately and easily. Put them where you can be sure they’ll go with you to the appointment. (Consider faxing them ahead of time, with a cover note asking to have them put in your chart. The doc can then review them ahead of your visit. There are benefits either way.)
– Let the doctor lead the appointment, because they find it easier to be forthcoming, but let them know you have a list to check against before leaving. They like that balance as a rule, because they want your need for info taken care of, but need to feel free to do things their way too.
– It’s your appointment. It’s their job to do you, and your case, full justice. Ask, and keep asking, until you feel you understand the answers.
– Write everything down, because the brain flips a switch when you leave the office and it’s amazing what you can forget.
– Get as many relevant printouts as possible before leaving.
– This is key, an enormous time saver in the long run: Go over your notes and handouts once you’re out of the office but before you pull out of the lot. Just take 5-10 minutes to sit down and go over everything, complete unfinished sentences, tie things together, fill in details you didn’t capture right away.
– When you get home, put your stack by your chair, get something to drink/eat, recharge your brain.
– Pick up your stack, pull out your computer or a pad, and put everything you’ve learned and acquired into a plan of action.
What are the most important things you got out of today?
What is the next thing to learn?
What is the next thing to do?
Are your next tasks and appointments on your calendar yet? (If not, do that. The ‘overwhelm’ tends to short circuit common sense. It’s pretty normal, so you might as well plan accordingly.)
– Once your calendar is updated, your to-do list is laid out, and you know the keywords you’ll need for further research, you’ve digested the appointment pretty well. So, get out your Timeline (which of course you have, or, if you’re new to having a chronic condition, you’re about to start) and fill in a new row.
The point of the pre-departure review is twofold:
1. It gives your brain exposure to the info outside the office, after that switch flicks in your brain, but before the info in all its rich detail gets dumped from your short-term memory.
2. With that second exposure helping secure the wealth of detail, it signals your brain to start working on creating networks between the new info and older info. This not only helps put your own situation in perspective and improves your base of knowledge, but it sets off a cascade of subconscious activity of a very helpful kind, destressing the situation and helping you get on top of your condition.
If this looks a lot like great study skills, there’s a reason 🙂 Chronic conditions require study so you can make better decisions on the basis of better understanding. This is definitely, fully, 5-star, hayull-yes, one of those things where the upfront additional effort (which honestly is pretty trivial) pays off a million times over downstream… in easier life changes, less trouble over choices, fewer complications, more time to spend on having your real life.
Speaking from way too much experience, it’s worth it!
May all your appointments go well and all your doctors be excellent.
I take good care of my brain. I work hard at learning more all the time about how to support and foster it in spite of this tedious collage of illnesses. Neurology interests me — always has. Now that it’s so personal an issue, it’s positively compelling. Neurology’s very complex, and hooks into everything — fascinatingly fractal, in the way it repeats the same physiological “phrases” to very different effect in different parts of the body in response to different changes.
I’ve been wrestling with my gut this past year or so. Lately, it looks and feels like someone’s taking a bicycle pump to it and bringing it up a little more every day. When it interferes with your breathing, that’s a lot of bloat!
I’ve found the gastrointestinal (GI) system to be a bit of a trial. It’s very complex, and hooks into everything. There’s no getting away from the endless iterations of its main roles of sensing, transforming, processing, and discarding: at the intracellular level, intercellular level, endocrine level, organ level, and so on.
Some observant part of my brain notes that the same characteristics I find appealing in neurology, are the same ones I find appalling in gastroenterology.
And the gut has so much STUFF in it…
The liver parked under the ribs at one side, the spleen at the other, holding half your blood at any one time, right across the top of your abdomen;
The endless loops of squirming intestine, stretching and shifting within their blobby webs of mesentery, shoving along several pounds of food residue at any one time along its length;
Lymphatic nodes linked in constellations in the shining webs of mesentery and glistening loops of intestine, ready to respond instantly to allergens or pathogens or anything else in your GI tract that could make your body revolt;
Major vessels, the abdominal aorta and the vena cava, coursing alongside the spine, apparently apart from the mess, but branching out so thoroughly and so minutely into the organs and the mesentery that the smartest rats in science couldn’t make it through that maze;
The tenth cranial nerve, forming an intimate and instant link between your brain and your gut, linking your brain directly to the largest grouping of nerves outside your brain, the nerves that surround and penetrate your organs and your gut, embedded in and supported by that amazing net of connective and fatty tissue, the mesentery;
And let’s not even go into the endocrine system, responding minutely — at the level of individual molecules at times — to the constituents in your food, the way you feel about them, what you need them for right then, what else you’re sensing at the time, and even what time of day or year or month it is… then hooking the info back out through the nervous system, cardiovascular system, lymphatic system, and of course the gastrointestinal system.
I was sitting in my Epsom bath today, mulling this over after the battery in my e-book died. I had done the squishing of my legs and arms with the washcloth, and ran it over my neck and back and sides too, but had a terrible time making myself touch my abdomen. It felt just awful. It also felt like it was somewhat detached from me, like it was floating a couple of inches off my back and spine, simply hovering, slightly displaced, in front of the rest of my physical self. Touching it was deeply upsetting in some way, triggering a wordless revulsion.
This is not an unusual experience for CRPSers. We often feel as if the affected parts of our bodies are almost separate from us, or like they belong to someone else, and touching them is — even apart from the allodynia — a crankiness-inducing, unpleasant experience. It’s a perceptual trick the brain plays, probably part of its general effort to manage more ghastliness than it’s really set up to deal with.
One reason I do the Epsom baths (and the stretching, and the activity, and the relaxation meditations, and the aikido/tai chi/qigong, etc.) is to stay on good terms with my body. That whole self-alienation thing is just too wrong, to me — my life is always best when I’m in my skin, so to speak, whether or not my circumstances suck.
Also, to be fair, my body has done nothing wrong; it just got some of the shortest darn straws out there, and it’s doing its mighty best to manage that. It doesn’t deserve my loathing at all. So, I work to keep on good terms with it.
This is probably one reason why I’m still often functional, frequently productive, and can still walk a mile without sitting down to rest on a good day — even after 15 years with this disease on little or no medication (here’s why no CNS depressants like narcotics, here’s why minimal other meds.)
Anyway, there I was in the bath, watching my belly inflate and almost float away, even though I was Epsom bathing (which usually calms my systems down), and realizing I was finding it unbearable to touch the darn thing, even though it was practically in front of me.
I thought, “Neurology is not that hard for me. Why is gastroenterology so impenetrable? Why am I making so little headway on figuring out this stomach stuff, and dealing with so many setbacks? Why do I get these little tailspins of terror about it? What’s going on in… the second largest collection of nerves outside my brain?” I said, as the lightbulb over my head turned on.
I thought, “I’ve been having a lot of trouble with gastroenterology. But I can usually do neurology.”
And the word for the neurology of the gut, ladies and gentlemen, is neurogastroenterology. (Break it down: neuro meaning nerves, gastro meaning stomach, entero meaning inestines, ology meaning study of. Now you have it.)
I’m pretty sure I can do that. I can sure take a stab at it.
First lesson: review the vagus, a.k.a. Cranial Nerve X. It’s a doozy.