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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Marathoning, murder, and masses

Who the hell would bomb a marathon? The shock and fury make my eyes hot and narrow.

Second thought: what a way to go – accomplishment, adrenaline, euphoria, and a quick blast.

Yesterday, ironically, I realized I was fully recovered from overdoing. That only took 11 days… I took careful walks around the park while recovering, so as not to lose much ground.

Leading myself along, and minding my posture.
Today I roughly doubled my walking distance and I’m back up to ~18 min. On a flat.

I’m grateful.

I grew up in Egypt, a Middle Eastern country. We were there in the relatively tranquil days of the late 1970s: Sadat was secure in power, a secularist who stood no nonsense and could be bought – excuse me, persuaded – into a peace treaty that ended several thousand years of war. (For the meantime.)

Islam was a thoughtful, neighborly religion. Guests were treated like the loveliest royalty. A blonde 13-year-old girl with a forward figure could (at least, did) walk the streets in daylight fearing nothing more than vile remarks and, in a crowd, a vile grope.

That was the key to life in a tourist country: avoid the crowds.
 
When terrorist attacks happened, and they were rare then, they happened in crowds. My family was constitutionally adventurous and put off by mob thinking, quite apart from the (really tiny) chance of bombs, so we just did what came naturally and took off on our own.
 
We saw crowds the way a sailor sees sandbars: a lot of work, and not much fun to get stuck with.

Moreover, I’ve always been an introvert in the Myers-Briggs sense, meaning that I recharge in solitude and that I find society in large doses simply exhausting.

Now, with CRPS, this distaste for crowds has become a deep aversion. The physical dynamic of being in crowds is unbearable: when people bump me unexpectedly, it’s horrific; the noise overwhelms my sensory brain, which, let’s face it, is overworked already; and, of course, my hotwired autonomic nervous system is ready with the fight or flight response… with nowhere to go that isn’t in the crowd.

Breathe. Breathe. Breathe.

I was reading Angela N. Hunt’s book about living while training for a first marathon, and her description of the starting crowd was appalling. For me, it would be like being inside a tiny electric fence, cattle jostling around against the outside, bashing and zapping me mindlessly and endlessly.

Not do-able. Not even think-able.

But that’s just a problem, and problems are meant to be solved.

There are several possible solutions: invoke the ADA and start in my own class behind the crowd; rustle up about five good buddies — preferably large, sturdy types — to run around me for the first half, and be a better fence until the crowd thins enough;

run a different marathon course over open country, with only a handful of others; or abandon the whole thing.

I can hear some strenuous votes for the last option. In the wake of the Boston marathon bombing, I’ll ignore them. Completely.

I will go on. If distance is not an insuperable barrier, then neither is willful fear. I’m a woman, weakened, disabled, and rather poor; I have enough to be afraid of. I don’t let it stop me. Why should this? I’ll wear the names of the dead, if it helps. I won’t let it stop me.

I will go on. I’ll find a way to avoid the crowds, in some creative and tasteful fashion.

I will go on.

“Watch me go.”

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"Angel" in my mouth

I use endearments because I’m an affectionate person. “Sweetie” and “honey” and (my personal favorite) “sweet pea” are terms I use whenever the urge strikes.


One word I never used, because it was just too hokey, was “angel.”

Yes, I used “sweet pea” with perfect ease, but couldn’t bring myself to call anyone “angel” with a straight face.

What can I say? We all have our limits, however idiosyncratic.

I thought, What an overused, overfluffy, overly silly word to use about someone who is decidedly human — as everyone I’ve met so far is.

Then I went through the Years from Hell, a period of about 3 years I try not to even think about because it was so bloody harrowing it’s unbearable to remember, and there’s nothing to be done now to change that.

One set of surprises were some of the people who I was sure would come through, but fell from view when their actions were supposed to match their words.

Many people who seem awfully nice are more socially adept than genuinely good. It’s an important distinction.

Starting late 2011, I found myself using the word “angel” as an endearment for a very particular set of people. It came naturally to my mouth as a substitute for “sweetie” or “sweet pea” when speaking to those who showed up when the going became almost impossible,

who never gave up on me despite good reason to do so,

and who showed up for me through thick and thicker.

The handful of people who made the key difference between my living and dying, are the ones I call “angel” — and find it easy to do so.

It’s not over- anything. It barely does them justice. And, I have to say, some of them were a real surprise: people who aren’t apparently nice can be genuinely decent and deeply good.

Like every ER nurse ever, I used to preen myself on how good a judge of character I was. This disease, and the many versions of Hell that it comes with, teaches us a thing or two about human nature.

It’s fair to say that, even at my most brain-frozen, my judgement about people’s core attributes is better than it used to be.

I know where to find the real angels on this earth.

Among my besties, that’s where.

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The Hot Cocoa of Peace


I’m thoroughly enjoying a cup of cocoa made by an excellent friend, warmly mulling another cocoa and another excellent friend.

C and I met at the American school in Cairo, Egypt, in the mid-1970’s, and I share this story with her kind permission. I had just moved there and she had just come over from the German school, where she had spent her first five years of school. Her mother was English, a working artist, and her father was American — although his English accent seemed slightly stronger than his wife’s – teaching drama and English at the University.

C told me something which, in this era of rising intolerance and martial rage, gets more interesting all the time…

At the German school, they had cocoa with their morning break. At that time, at least, German children took their cocoa without sugar – more like coffee, really, but milkier and easier on the adrenals. But, every day at 10:30, one of the staff would bring out, on a little silver salver, a sugar bowl and a small spoon, just for the one child who was used to having her cocoa sweet.

It’s a simple story with a lot behind it.

This was less than 30 years after Germany had succumbed to two bitter defeats — an internal one, when they collectively gave in to a meme of hatred and intolerance; and an external one, where they were eventually crushed — despite superior technology and better training — in an epic war.

We lived in a country that had been one of the pivotal battle-grounds of that war. Think of Rommel, the Desert Fox, or google El Alamein.

This one child was the product of their two most bitter recent enemies.  And they were both nuns and teachers, second only to nurses in their capacity for passive-aggressiveness, suppressed rage and murder with a smile.

The way they handled it was this: they taught her the same, scolded her the same, cared for her the same, made accommodations as she learned the language but expected her to finish her homework — and, every day, brought sugar on a little silver salver just for her, so she could mix exactly the right amount of sweetness into her cocoa.

It could have been seen as coddling, and there’s no question that C enjoyed the little feeling of specialness. It could have been seen to spoil her. Instead, it was a demonstration of — well — not just tolerance, not just accommodation, but of real graciousness and decency, a touch of comfort in a foreign environment, and a tiny gift of autonomy inside the regimented life of a strict school.

As it turns out, it was a lesson well learned, because C has always been one of the most gracious and utterly decent people I’ve ever met, while being wholly individual.

She’s also the most adept amateur historian I’ve ever even heard of, one who shows the real sensitivity and love in the word “amateur.” Hard not to be, growing up in such a place, with parents grabbing at life with both hands, as hers did.

But it’s hard for me not to think of an intelligent, middle-aged Teuton with an excellent memory, bringing a little Anglo girl sugar on a salver, without any fuss… and wonder what that added to the mix.

I sit here, wreathed in gentle steam, and wonder what it would take to share my cocoa with all this anguished world. It would be a better place indeed.

And I’d be happy to bring sugar on a salver to anyone who likes it.

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Getting it right

H’mm… Struggling with the recurring message from the world around me that I can’t do this, I can’t cure this case of cold chronic CRPS. It’s twinned with the message that, whatever I’m doing, it’s wrong.

I’m not interested in whining, because, as my CRPS cohorts know, this nonsense is par for the course… but every now and then, it’s good to step back and do a reality check.Let’s take a good look at this thinking:

  • On the conventional medicine side, I walked into a new doctor’s office with my tabulated timeline of years of a complex case, pictures showing the evolution of the disease in this body, and documentation about what works and what doesn’t. The response: “You spend way too much time thinking about this!”

Don’t waste time trying to find any upside to that remark. It surprised me especially because most of my docs (the best in the biz) loved my documentation. Now I know that the really good doctors love it, and the ones who don’t love it are either one-trick ponies or second-rate. This one was a one-trick pony, and once he’d done his job, I was gone.

Let’s back up and pretend this guy asked,

  • “Wow, that’s a boatload of well-crafted, thoughtful documentation. Why did you go to so much apparent effort?”

I’d say, “I was a nurse so the concepts are easy, and I was a tech writer so the structure is even easier. This is a cakewalk for me. If I CAN’T document what’s going on, check for a pulse!

“Moreover,” I’d go on, assuming the doctor cared about my well-being, “tracking this stuff frees up my attention by letting me plonk it down in black & white and then put it out of my head. That leaves the rest of my time free for meditating, friends, bathing, housework, and so on.

“Besides,” I’d add, if the doctor looked like one who could take a joke, “most docs find this case hopelessly confusing, and I don’t need you wasting my time by asking the same questions 3 times and still getting it all wrong in the end, just like the one other doc who refused to look at this!” Ha ha.

Clinical note: Seriously, physicians, that’s how to handle an expert patient: Ask, then listen. Saves time.

  • The alt-health folks are liable to tell me, first, that I’m sick because I think the wrong thoughts; then, if they ask about my mental habits, it’s obviously because I eat toxic foods; if they want to get straightened out about that, “it’s clear, dear, that you’re too attached to this disease” and there’s nothing anyone can do to help. (Direct quote.)

My fellow CRPSers are thinking exactly the same things as me right now.

Besides the sheer cruelty of that response, the fact is that spontaneous total remission from CRPS after the first 3 years is even rarer than spontaneous remission in cancer or AIDS. I’ve heard of it happening once as late as 7 years; I’ve had it for roughly 10; average survival is 30 years after onset. If any of you has more optimistic data, I’d love to see it!

Here are some things I’ve learned about how what you think and what you do REALLY affect the course of your CRPS:

  • Those who stick exclusively with the conventional model and submit to their doctors without question, especially when they have noxious drug reactions (as I do), tend to suffer much and die young.
    That’s what happens when you’re a passive patient with a disease that few doctors understand.
  • Those who become well-informed and educate their doctors, have better results and do considerably better for much longer.
    That’s what happens when you open your eyes and take initiative regarding a very rare and complex disease.
  • Those who research and implement changes to diet and lifestyle most vigorously, have the best results from their care and use a lot less medication with much better results, higher function, and lower disability.
    That’s what happens when you shoulder real responsibility for what you do and how it affects your life.
  • Those who are active in the online communities, seeking support and providing support to others and sharing information, tend to beat the odds.
    That’s what happens when you constructively engage with your community.

I’m looking for something I’m not doing yet. I will figure it out, hunt it down and I will do it.

CRPS is an incredibly hard disease, in every conceivable way. Where there is any spontaneous remission at all, there is something to work with. I just haven’t figured out what yet.

Since I still have CRPS, I find those recurring messages a little intimidating. I  don’t yet have hard data to throw back against the key message.

I can see that, when others say I’m doing things wrong, the statements tend to be presumptuous and ill-informed — but the fact is, I still haven’t cured my own case of CRPS …YET.

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