Decisions, decisions, decisions (this is a triptych)

WordPress has utterly changed their writing UI. Apparently, they felt the need to reinvent text entry… (um… Why???)

I usually hold off on publishing a post until I’ve got the formatting tidied up and the images in. I can’t even figure out how to do that yet. So I’m posting a couple of ragged, really funny-looking articles, because it’s better than not posting at all, and there is SO much to keep up with I don’t want to keep falling behind here.

Back to our regularly scheduled programming…

As I’ve said before, making decisions amidst pain-brain and the neurowackiness of CRPS is not the easiest thing to do.

It takes more effort and time than it used to, but the years have led me to certain strategies that help me make good decisions pretty consistently, even though doing so is such an up-hill task.
[Sysiphus image]

1: Good info about the problem.
The idea of “good info” is key. For health and practical matters, I need my info to be coherent, consistent, reliable, and reasonable. Above all, I need it to reflect reality — in other words, to be true.

Opinions are not info, except when they are.

“Hey, thanks for that totally meaningless sentence, Isy! That’s not confusing at all!”

But seriously — a professional opinion, about something that’s pertinent, does matter. That opinion goes into the data pool.

Personal opinions, which are usually accompanied by logical fallacies[LINK], are not data (except to sociologists and comedians) and will never be useful to me. I can provide my own, if I want them. I’ve got loads of opinions, but they go up on the shelf when I’m culling information.

I need facts, data, professional (or highly-skilled amateur) quality input.

At this point, I’m not always as diligent about that as I think I should be. A large part of this early stage of inquiry is getting a sense of the social and cultural clues. I find it almost impossible to immerse myself in a subject without letting in some of the noise around it. /shrug/ Not perfect yet.

1a: Enough good info

After mulling things for a bit, I find that the lower-quality info annoys me instead of pulling me in, and I seek out more higher-quality info with a better basis in experience or science or whatever the best measure of the field is.

I’m building a mental map of the field, and where I see blank spaces, I try to fill them in with information.

  1. Good information about my options.
    This is where it gets interesting. Because of my significant non-standard needs, which are not so much a matter of taste as of survival (key point there!), I have to put extra time, diligence, and effort into developing a good list of options, because by the time I’ve done a reality check to evaluate my options against my diseases and disabilities, the REAL options available to ME tend to be few — even where most people would have a lot to choose from.

This is one of those occasions where the limits I live with just hit me in the face, and I have to figure out how to deal with a reality most people can’t even wrap their heads around as anything other than a bizarre whimsy or a sign of questionable judgment.

That hurts.

Moving right along here…

  1. Time to digest it

[use nav. tree image to illustrate how I absorb info, so it can be used as needed in any context.]

Reality check #1 — floating trial balloons
This is when I can sound half-cocked, because the decisions are floating around in my brain in about 5 dimensions and don’t readily lend themselves to explanatory words. Action words, yes, but not explanatory ones. So,it sounds like I’m going off half-cocked, when what I’m doing is trying on a decision for size.

My focus is oriented towards implementing my current decision, and of course at the time I always think it’s the Real Plan. If I didn’t, I wouldn’t focus as hard and pay as close attention to what goes on when my decisions meet the outer reality.

At this point, I’ve got the basic decision made, and I’m roughing out how to make it happen.

Because I have a peculiar set of circumstances (in every possible respect, it seems), my decisions are rarely off-the-shelf solutions. Every solution is customized. They have to be, or I suffer, lose brains, and die horribly. Or, at least, things don’t go well. YMMV — my mileage varies all the time.

  1. Digest results and lessons learned
    Just what it says. This is a semi-conscious process that I can feel happening, but doesn’t lend itself well to description. It’s more of the tree-and-grass activity, adjusting and tuning my ideas and understanding all the way down and all the way across and all the way up the related chains of ideas. It takes a lot longer than it used to, but it does happen if I’m patient and let it be.

In time, what I don’t know becomes obvious to me, and what I need to unload just goes.

If, at this point, I’ve got a workable choice, I’m done. Time for the next task.

If not, time to re-assess and re-evaluate.

  1. Seek out more and better info
    At this point, I’m past online research alone; I need to talk to experts. This involves phone calls and meetings and interviews. The face-time may not be free. The mobility may not be easy. I may have to spend more time on the phone than my brain is, er, quite happy with.

This one-to-one contact is a super-effective way for me to get more info out of people than they’re aware that they’re sharing, so if I can afford it — physically and fiscally — I’ll do it.

Naturally, being me (and wanting to get the most out of everyone’s time), I prepare for these conversations. I want to make sure I:

  • Have the vocabulary. I’m not at all afraid to ask for corrections, but it’s essential to have a working vocabulary of the subject and the major professionals involved. An hour or four over a few days of web-reading usually provides enough context for me to get going with.
  • Can show an intelligent interest in them and the subject. They need to know I’m taking them seriously in order for them to take me seriously. An extra 15 minutes on their web site, learning about the people and history behind the industry or company, pays off hugely.
  • Have a clear, specific answer to the question, “What can I do for you?” I need to know what it will look like when I have the answers I’m looking for. That means I need to have a pretty good idea what my questions should be. This is rarely as easy as it sounds. All those orbiting words and ideas have to be beaten into some kind of shape so the question marks bursting out of my head have meaningful sentences in front of them.
  • Have note-taking or recording equipment appropriate to the format of the meeting and my physical and attentional abilities at the time. I need notes. As medical professionals get drilled into our heads, “If it isn’t documented, it didn’t happen.” Plus, I want to make sure I get the data right. The ideas I can process; it’s the facts and figures and new terms I need to preserve.
  • Correct contact info for those I want to talk with. (It’s the little things…)

Since the bulk of my online research has already happened, the online part of this “more and better info” search is largely backward-referring:

  • Reviewing the websites I found most helpful
  • Chasing down data or info that seemed less important then, but deserves attention now
  • Filling in holes I didn’t notice or didn’t care about before, but want to clear up now
  • Going through my Evernote directory, if it’s a subject that needs one, and making sure I have enough info in it that I could go back and reconstruct my reasoning just from my information pool.

The discussions and “interviews” with friends and trusted contacts are important (especially in relation to whether an option matches my needs) but much more casual. A significant exchange can happen in 15 seconds at the deli counter or between gossip and talk about the weather. I can “download” a huge amount of info in these brief, solid exchanges with people who know me well.

Therefore, after a certain (large) amount of data-gathering, thinking, and processing, it’s essential for me to do sanity-checks and get assessments from friends and contacts I trust in that context.

  1. Reality check #2 — feasible plan, with fallbacks
    This is where the adhesive meets the tacky surface. There’s a lot more weight and momentum behind a plan that falls into place after all that thinking and working and studying up and experimenting, and it shows.

At this point, I should know what a successful outcome involves, what the major pitfalls — both generally, and for me particularly — could be and how to avoid or mitigate them, and what the likeliest way to implement the decision successfully should be. I should also have a good idea what “yellow light” and “red light” signals to look for, and what to do if they happen. I should have a good idea what the first round of “gotchas” might be and what to do to avoid them or deal with them. (Later “gotchas” are less likely to be out of the blue, and can be figured out more easily.)

To think it used to be so easy, and lightning quick, before I got sick.

I remember wondering, almost a decade ago, how I could possibly make sound decisions when there was so much that was so uncertain in my mind. The time passed, I kept working on it, and the decisions involved in making a process for decisions evolved into something repeatable and reliable. Phew!

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Mental toolkit for overwhelming times

As I’ve said before, much of brain-retraining has to do with speaking to the primitive parts of the brain in ways it can’t ignore.

Being overwhelmed is very common these days. So, this tool is helpful for far more than just  my fellow painiacs. I originally laid this out for someone else dealing with very different issues, and realized as I did so that it was a darn good tool and I’d have to remember it for myself. It has already been a help to me, so I hope it helps others as well.

The State of Overwhelm

I can tell when I’m in the state of Overwhelm because life is just a big old mess of decisions and problems and unresolved issues which are so toweringly massive they stop making sense. My usual ability to sort and prioritize and manage information freezes up, and my brain skids off into the ditch.

pencil and ink wash drawing of WW 1 red cross van sliding backwards off a mountain road

Once I’m in Overwhelm, it’s unreasonable to try to reason my way out of it in my usual way. Each thought is blocked by half a dozen issues backed up against it.

I’ve got to simplify. Not just that, but I need to SUPER-simplify — break it down into binary questions — that is, questions with only one of two possible answers. It’s the only way I can start managing the pile.

(What follows is a technique used in several disciplines. I’m avoiding jargon and simply using the words I use in conversation.)

The roadmap out of Overwhelm

When I was rebuilding my credit, the first thing to do was to figure out what I really owed, and what someone else was supposed to pay. This is a good template for dealing with Overwhelm.

First, whose job is it, really?

When I get overwhelmed, it’s hard to tell what’s my responsibility and what’s really someone else’s. It feels like this:

white box with orange speckles throughout, with the words "my job" on the left and "someone else's job" on the right, with no barrier between them

All the jobs are kind of muddled around in the space and there are too many jobs and not enough space.

When I draw a mental barrier between the two, things suddenly start to clear up:

plain white box, with a line down the middle. "my job" in left part, "someone else's job" in right part.

Notice that, at this point, I don’t need to know who the “someone else” is; the first step is to be clear about whether it’s my job or not.

Managing my care?

my job slash someone else's job box, with my job illuminated and someone else's job darkened

Ordering tests and prescribing meds?

my job slash someone else's job box, with someone else's job illuminated and my job darkened

Testing those meds on my system, tracking their benefits and drawbacks, and updating the prescriber?

my job slash someone else's job box, with my job illuminated and someone else's job darkened

Keeping the dishes clean?

my job slash someone else's job box, with someone else's job illuminated and my job darkened

Keeping the outside steps de-iced?

my job slash someone else's job box, with my job illuminated and someone else's job darkened

(It’s my one outdoor job, and my partner does everything that I can’t and a lot that I shouldn’t, so I bundle up and take care of the steps without a whimper.)

Second, is it something volunteers can do or is it a professional job?

This is an important distinction.

binary box, with "volunteer job" on left and "professional job" on right, with bar down middle dividing the two

When in doubt, upgrade.

Volunteers

Take care not to abuse the skills of your volunteers. You may know lawyers, counselors, accountants, and so forth, but that doesn’t make it right to ask for free professional services from them, except under unusual circumstances.

If those who help me out aren’t being paid (either by an agency/employer or by me), then they’re a volunteer, regardless of the skills they have.

I tread as lightly as I can on my volunteers. It’s an important long-term goal not to alienate them, but to keep them comfortable with me and happy to stick around.

Professionals

The corollary is, I have high standards for my professionals, and hold them to those standards with all the clarity-with-courtesy I can manage. I have no hesitation about firing someone who consistently fails to measure up.

I put a lot of legwork into choosing my doctors. Here’s an overview of the process and links I used a few years ago: How I find my doctors

It’s certainly worth the time and effort to find good people who can do justice to your life and your needs. The question is whether you can find the slack. I hope so.

Examples

Fix the heater?

binary box, volunteer/professional, with professional job illuminated and volunteer job darkened

Put us up for a night until it’s fixed?

binary box, volunteer/professional, volunteer job illuminated and professional job darkened

Give hugs, tea, and sympathy when I’m recently bereaved?

binary box, volunteer/professional, volunteer job illuminated and professional job darkened

Train me in how to get my brain to reprocess deep pain (and the staggering scope of loss associated with it) without short-circuiting?

binary box, volunteer/professional, with professional job illuminated and volunteer job darkened

This is definitely not for volunteers; too much knowledge about neuropsych and too much investment of time is required.

Professional level brain & mind care

For some things, talking to a friend, doing something strenuous, or meditating a lot, is enough to allow a person to heal heart and mind. Life itself is generally a good therapist.

Some things are too complex, too deep, or too dangerous for amateurs. Despite our longstanding social taboos, people with recurring trauma (like central pain or abusive relationships) or PTSD (like survivors of war or child abuse or those who’ve been through worker’s compensation or disability applications on top of a devastating condition) are right and smart to get highly-qualified care for resolving the damage that these things do to our minds and our brains. The damage is not imaginary, and sheer force of will is not a great tool for healing it.

Sketch of brain, with bits falling off and popping out, and a bandaid over the worst

It CAN be healed, even the worst of it. It does NOT require chewing over the past; in fact, that’s often avoided in modern trauma counseling, because that can do to the PTSD brain roughly what our recurring pain does to  CRPS brains.

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

Some techniques DO re-map and re-train the brain to make room for more stability, more healthiness, and move even a CRPS’d brain closer to a normal state.

Less pain! More joy! Less instability! More abilities 🙂

Some keywords for finding relevant mental health professionals: trauma-informed, PTSD, pain psychology. These are jargon terms that usually indicate the professional understands how these profound experiences affect our brains, and how that can be rewound or reworked to a better state.

Another thing you can do

It helps to vote for legislators who see the value in health care, including mental health care. Conservative estimates say that each $1 spent on care saves between $10 and $100 in downstream costs (ER visits, health costs, police activity, lost productivity, lost wages, family impact, etc.) Middle-of-the-road estimates place the savings much higher.

Something to think about, in times like these.

Find your legislators here and let them know what you think:

  • In the US, here’s where you find national, state, and local legislator info: www.usa.gov
  • Canadians, here is your national parliament contact info: http://www.parl.ca/

Please feel free to add contact info for elected officials in other countries in the comments below. It has become clear that voting is a health-care issue.

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CRPS terminology, under the nervous grin

After talking with patients, doctors, and loved ones — and, as a trained observer, carefully noticing the changes in posture, expression, and tone as I’ve done so — I’ve arrived at the following conclusion. I realize it flies in the face of current accepted usage, but there are some things wrong with current accepted usage, and I don’t mind saying so.

/SeeYarP’Yes/ is not that hard to say.

No, it’s not proper to call it CRiPS unless you yourself have it. This is partly because “crips” is a term of abuse for disabled people and using the term for a particular set of disabled people won’t change that, and partly because Crips is the name of a violent organized crime group originating from Southern California. Neither is an appropriate form of address for those who have the most disruptive and intransigent pain disease known to science, and can’t perpetrate violence because of the devastation it wreaks in their own bodies.

Those who have this disease sure don’t need to be subliminally messaged with either association.

I understand that young docs are being trained to use the term in order to remind themselves that it is, in fact, a disabling disease. My view is that, if you’re smart enough to graduate from medical school, you’re smart enough to remember that disruption of the central nervous system can be pretty freaking disabling, in CRPS as in spinal injury or Alzheimer’s or anything else that disrupts the normal structure, chemistry, and behavior of the central nervous system.

The fact that the current name focuses on “pain” is a problem of nomenclature, which will change again as it often has since the year 1548 when it was first described by Ambroise Paré, father of forensic medicine and physician to the French court at the time. (Look him up — great guy. Prefigured that outstanding physician and gifted schmooze-meister Dr. Silas Weir by over 300 years.)

CRaPS, as in the game of chance, is not recommended. It sounds like a vulgar term for bowel excretions, which is — if possible — even more inappropriate. It’s certainly a “crappy” disease, but having said that, it’s time to move on and not keep reminding someone that they feel (and believe they look) like shit.

Of course your CRPS patients say they don’t mind. Check the power differential; their ability to bear to live is in your hands, doctor/loved one, so they’re highly motivated to be nice and go along with anything that doesn’t involve an immediate threat. They want you to feel good about them, so they will laugh along with you, however unreal it feels.

Have some decency — don’t call them or their disease CRiPS or CRaPS, even if they say it’s okay. They don’t need to feel any worse than they already do.

The CRPS patients can call it whatever they like, because only they know how bad it really is, and have the right — and need — to cuss it now and then.

/SeeYarP’Yes/ is not that hard to say. It’s only 4 syllables, like “pain diseases” or “really bad day.” It’s 20% shorter than the word “dehumanizing.”

This moment of intellectual — and emotional — honesty has been brought to you by a nightmare I woke up with this morning. My nightmares are a direct result of my disordered central nervous system, which can no longer process things normally and has to roil around and tear up the pavement in between the constant push-back and re-organization that takes place in my waking state.

It’s pretty crappy, not to mention crippling. But I rise above it, yet again, as I intend to do every day until the day I die. I sure appreciate anything others can do to avoid making that harder.

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Related: health care coverage, economic policy, and racism

The same thinking that underlies racism, sexism, and classism underlies the thinking that says, “Hey, let’s get rid of health care coverage for those who aren’t federal politicians, well-employed, or wealthy.”

The bottom line is treating people as things, and money as the thing of most value.

All humans have something to give, which is only freed up when the basic needs of survival are met; money is a means of exchange but is, itself, neither food nor drink nor fuel nor care. It only gets us any of these things if everyone buys into it as a medium of exchange. That piece of paper has no intrinsic value.

Rational policy is based on the understanding that humans give and receive value, while money represents a part of that value. Corollary is, money must move around to gain value; letting it pile up in drifts and hold still is bad long-term policy, as Reagan’s advisors can now see.

“Trickle-down” assumed that rich people would spend. Rich people don’t spend. They save and invest. Thus, their money moves as little as possible, in order to keep more money coming back to them, where it stagnates further. The real economy (wages, employment, individual bankruptcies, COL, savings, home-ownership, etc.) is nearly dead in the water, but the stock exchange is doing better than ever; that’s how bad the disconnect is now.

With wages lower than a worm’s belly and the formerly-thriving middle class nearly all gone, most human energy is consumed by the struggle for survival. We have, in fact, enough resources and infrastructure that the only people who need to work are those who really want to (that would still be far more than half of us; stop seeing your exhaustion as laziness.)

Given the chance to survive, humans give back. It’s simply what we do. As some cities and a few countries have discovered, with housing, food, and care assured, creativity and productivity blossom. Value grows. Stability grows with it. So does the economy, by the way. Not in leaps and bounds, but at a steady, calm, non-bubbly, sustainable rate.

Weird idea, eh? I mean, who wants stability, right?

matchgrins-horsenwoman_decamps-pauline_4blog

I’ll give you a moment to pull yourself together…

Keeping people feeling cheated, disenfranchised, and looking for someone to blame other than those who hold the scales, is a great way to kill that kind of success. Racism, sexism in all its forms, and classism are the key tools used to divide and conquer us.

By request, I’m pasting in a stream-of-consciousness post I made elsewhere about racism. It relates to “living anyway” because, as with having a horrible disease, having and not having race/gender privilege does NOT have to poison my life, destroy my chances for freedom-within-my-limits, or negate my right to find true joy.

I know you know this about me, but in light of the horrors of the week, I just want to lay this out there, in order to be absolutely clear. Ready? here’s some Isy intensity. (Is-ensity?) …

 

I abhor racism. I abhor it in myself above all, and every day I try to educate/inform/reflect/analyze/remove a little more from my own mind and heart. I screw up sometimes, and the guilt for every screwup never leaves me. (True. OTT, but true.)

 

None of us are free until all of us are free. That’s not polemic, it’s basic psychology. The thinking that pulls us apart is irrational and hostile to our individual and collective well-being. Take a course; take two; you’ll see. It takes real work to get through the mental blocks to understand that fully, and classes provide the guidance and support to make that task feasible. It’s worth it.

 

I take an anti-ism/liberation course or pick up an enlightening book once or twice a year at least, sometimes more if I need it. The reason is this: I shower every day or two, because if I don’t, the stink builds up; same thing happens to the mind of a White woman living in this grubby world. Gotta clean up my thinking, because it’ll inevitably get mucked up by living in my skin in this larger reality.

 

  • As long as Native Americans of all ages are systematically robbed and murdered and left uncounted, I’m hollering for justice;
  • As long as Black people are shot down like amusement-park targets, I’m a co-conspirator in Black liberation;
  • As long as Latinos are thrown out like trash, I’m a gringa curandera for the soul of this nation;
  • As long as Asians, from the Subcontinent or the mainland or any of the islands, are silenced, entombed in unmarked graves, and their history erased from these shores, I’m an impassioned teacher of history;
  • As long as … go on, try to think of a race this country HASN’T systematically trashed. Even Whites — cf. indenture, which has changed its name but not its condition since the founding of this country.

 

Think the rich are free? Imagine the underlying terror of knowing that 99% of the population would gladly end you and destroy all you cherish. (A bit like the rest of us feel about the forces they keep in play, but still.)

 

Want to know more? Use primary sources. Nothing is more telling, or compelling, than the words and images of those who were there. Want to know what the data are? Go to the proximal sources — ignore the pundits. Racism, and its toxic twins classism and sexism (including gender isms; graduate class on that coming shortly), poison all didactic thinking to some degree. Look at primary sources, and digest them yourself. It’s worth it.

 

None of us are immune from the effects of racism. Even loads of money only cushions you, as long as you can access its benefits; it doesn’t make you safer outside your circle. Speaking as someone who changed socioeconomic class dramatically, and rather quickly, I’m strongly aware of the value of having social ethics that don’t lock me to an income bracket or neighborhood.

 

Nobody, but nobody, is free, until all of us are free.

Hatred is no way to run a country, let alone a life.

 

Fiercely and lovingly yours,

Isy

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Freaky Fibro and the elegance of precision

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…

Kidding, Mom!

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.

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Different doctors FTW

My pain diagnostic specialist is elegantly opinionated. Fortunately, he acts out the distinction between being opinionated and being rude about it.

We talked over a few things today. He’s still researching my past exposures to uranium, which he has a hard time believing wouldn’t have lasting effects.

He spent a lot of time combing through the idea that evidence-based medicine (in the sense that doctors use the term, not the sense that insurers do, where it means “how can we treat this as cheaply and barbarically as possible”) is really the best and least scary thing out there. Because, data.

I mentioned Dr. Scott Reuben at this point, and he owned that the scientist-practitioner does have to practice with integrity for the science to be meaningful.

He went on to say that the miracle cases that wind up in the literature leave physicians panting to find the next patient who shows up looking just like that case, so they can try the miracle. Doesn’t happen much, and so, there winds up being a paucity of data on rare cases (like mine) that meets the criteria of medical science as he sees it should be.

In the end, as always happens in conversation with a physician who has intellectual integrity, we found ourselves in the cleft stick of modern science:

While statistical probabilities indicate the best chances of success for groups overall, it has two glaring weaknesses, even in ideal circumstances: statistics depend on copious data, which aren’t always obtainable; and statistics mean nothing in the case of the individual.

Thousands of individuals are studied in order to come up with meaningful statistics. Of those individuals studied, how many respond to the treatment at the level of the group’s statistical probability? How many patients in real life will respond at that level? Pfft. All the statistics do is tell you how much of a crap-shoot a given treatment really is; it doesn’t tell you how well or badly it will do for you.

Last Friday, I saw my allergist/naturopathic MD at Northampton Integrative Wellness. He’s exploring mold toxicity, which sure hits all the hot issues I deal with. It doesn’t meet Dr. Saberski’s mental criteria, as I suspected, but that’s okay — I don’t need Dr. Saberski to follow up on it. I need someone like the docs at Integrative Wellness, who have the relevant background and tools, to follow up on it.

Because of my own experiences, I don’t necessarily assume that a well-educated, well-respected, well-published physician necessarily has a lot of intellectual integrity. However, I’ve come to the conclusion, through our conversations and his decisions along the way, that Dr. Saberski’s entire being (at work) is oriented on intellectual integrity.

We may not view things the same way, and he may not be thrilled at everything I do, but the fact is, he shouldn’t have to be. He’s delighted with my good results when I get them, and if this mold toxicity thing pans out and the treatment goes well, he’ll be truly elated for me — and will keep my chart on file, just in case I come back later.

I find it HUGELY relaxing to have such a resolute scientific conservative with such ferociously diligent, relentlessly inquisitive intelligence, which is completely balanced on intellectual integrity, on my case.

All I have to do in relation to the standard science is let him do his job! I do not have to educate this one — quite the reverse! I savor our conversations and make extensive notes, because he always has something to teach me. (Today’s exciting topics: what makes me NOT look like CRPS; the Flexner Report in history; how anesthesiologists, who have the diagnostic training of a spaniel, wound up running pain clinics — another stupid consequence of US insurance companies; and how the nociceptors and immune signaling in the skin are all entangled into being one thing. Woot! Fun stuff 🙂 )

That, frankly, has been unheard of for most of my time with this illness, whatever it turns out to be. I’m well and truly rid of the fearful weight of using my rare full-brain times to try to stay one step ahead of the risk to my survival and management that every doctor visit can be.

I can use my full- and even three-quarters brain time to study up on the stuff he can’t be interested in. For one thing, the vocabulary and writing style is usually less klunky and demanding. For another, that is supposed to be my job.

Patients should figure out what they can do for themselves without making things worse, so I’m happy to do that.

Now, I’m going to find out more about mold toxicity, methods and treatments, plus what data do exist on what to expect from those treatments and what they do in the body. According to my current info, the main researchers are Shoemaker on one hand, and Nathan and Brewer on the other. My allergy/naturo doc is leaving, so I’ll have to start with another one at the same practice. This means I’d better prepare, so I can move the conversation forward a little faster than usual. That means being able to speak her language in regard to what we’re looking into.

I find it’s best to impress doctors right off and for the first several visits, and then, if I’m having a bad day another time, they have a meaningful bar to measure against, and they don’t lose respect for me or dump me into that “just another whacky pain patient” mental garbage-can. I work hard to make visits as useful as possible, as regular readers know.

I’m also getting ready to do another massage intensive. Looking forward to that! It’s pretty uncomfortable for a couple weeks (arnica pills 6c and 30c, and Advil Liqui-Gels, are essential pre- and post-massage medication), but the payoff could be so spectacular. I’m tired of the downward slide and intend to crank up the functional level one way or another.

Winter bit me pretty hard. It’s time to start biting back.

"Visis mu! I care for you, so let me hand you this wildly inappropriate thing, because I’m too rushed to think things all the way through!"
“Visis mu! I care for you, so let me hand you this wildly inappropriate thing, because I’m too rushed to think things all the way through!”

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More on medical relationships as a 2-way street

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

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.

And, of course, the peer pressure is enormous.
They’re all looking at you pretty much the same way. Lovely, isn’t it?

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:

A patient encounter that almost pushes this doctor over the edge

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.

CPR

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:

How Doctors Respond to Chronic Pain

photo of someone wearing a nametag Dr Whatsit, with a word balloon saying, Oh heck! What do I do?

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.

me-fingers-peace

 

*1: A write-up of one of many studies about feeling others’ pain:
http://www.dailymail.co.uk/sciencetech/article-1237760/People-say-feel-pain-really-do.html
And a scientific article looking at brain response:
http://cercor.oxfordjournals.org/content/17/1/230.full”

*2: A particularly dazzling piece from a UK doctor on coming to terms with treating (and living with) chronic pain patients:
https://abetternhs.net/2013/09/07/pain/

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Cleaning up the question of antibacterial soap

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:

  1. 20 seconds by the clock (you’d be amazed how long that really is) with regular hand or body soap,
  2. 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,
  3. 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.

Hope it helps!

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Talking about CRPS with boundaries, perspective, and joy

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.

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

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.

Lead-grey statue of dark angels swooping down from the sky

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.

Image from the Australian RSD syndrome support group, Oz RSD Forum
Terminal cancer can be a 50.
Image from the Australian RSD syndrome support group, Oz RSD Forum

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.

Pathetic? No.

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?

Old-timey line drawing of a skeleton with fiddle and snake dancing absurdly with a woman trying to look away.
She looks more embarrassed than anything. Makes sense to me.. From openclipart.org.

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.

Detail of a Bosch painting. Whiskery demon holding and reaching for a misereable man.
Bosch knew.

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.

Sysiphus looking miserable as he pushes a rock up hill... with poor body mechanics.
We each have our own load. I’ll keep mine; it’s my job.

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!

view forward from deck of sailboat. Mainsail on right, jib on left, Marin headlands and Golden Gate visible between.
Image mine, share-alike attribution (livinganyway.com) license, C.2015 🙂

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.

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My gut has a mind of its own

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

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

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

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

And the gut has so much STUFF in it…

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

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

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

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

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

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

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

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

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

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

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

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

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