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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The Bean Dip Response, companion to the Spoon Theory

Those of us with crazy-bad illnesses appreciate the stroke of genius from Christine Miserandino, who originated the Spoon Theory to explain what it takes to get through the day.

For the most part, though, we shouldn’t have to explain much. Wouldn’t it be nice if everyone could get that memo?

To that end, here is a great article by family therapist and parent counselor Joanne Ketch on parenting boundaries, using the Bean Dip Response: http://www.joanneketch.com/ParentingChoiceBoundaries.en.html

With her permission and kind support, I’ve revised her article to reflect the realities of the chronically or severely ill. Please feel free to print out/pass on, with credit to her embedded as it is in this text.

Here’s my version…

Health Management Choices – Boundaries

A long time ago, as a developing patient educator, I found many chronic patients uncomfortable and frustrated with unsolicited advice – or inadvertently soliciting advice and then feeling uncomfortable with the discussion that followed.

Eventually, I read this great article on boundaries that eventually become known as “The Bean Dip Response”, “Pass the Bean Dip”, or even used as a verb: “bean dip” someone.

I rewrote the article from the perspective of a chronically ill, alternative-using or drug-disabled patient (one who can’t use common meds for the condition because of uselessness or devastating side-effects) – but the principles are transferrable to any constellation of health management choices.

The Bean Dip Response is best used when you don’t need to defend or don’t wish to engage with a person over a health management choice. If you are discussing issues with a person and you welcome their feedback, the Bean Dip Response is not needed.

I’ve found that chronic patients may confuse boundaries while trying to convince someone of the rightness of their choices. The best thing is to assert your boundary, rather than defend your choice. Your choice needs no defense.

Health management choices should be on a “need to know” basis. Most people don’t “need to know”. Since medical information is highly confidential, it’s NOT incumbent on you to explain yourself to those who don’t need to know. Those who need to know are essentially you, your doctors/providers, and your designated decision-maker for when you can’t make your own decisions.

If anyone else asks, "How are you sleeping?"
Answer: Great! Thanks for asking! Want some bean dip?

"Are you sure you should get picked up every time your legs flare?"
Answer: “Yes! Thank you! Want some bean dip?"

"When do you plan to wean off those meds?"
Answer: "When it's time. Thanks! Want some bean dip?"

"You should use my aunt's hairdresser's physiotherapist's product. It cleared up her [symptom du jour] in two weeks."
Answer: "That's great! I'm happy for her. Want some bean dip?"

Now, with some people you will need to set firm boundaries. The offer of bean dip won’t be sufficient to redirect them [I can’t imagine why not. -ed.] They either don’t respond to gentle redirection or they have emotion tied to the issue and a desire to “go there” more deeply. You may be able to anticipate this – if it’s a pattern of intrusion, for example, which you’ve seen in other circumstances.

In such a case, a stronger “Bean Dip” response may be needed. In these cases, the redirect will need to be backed up with action (like hanging up, leaving the room, or even unfriending them).

Remember, boundaries are not about forcing another person to comply. You cannot “do” that. Boundaries are about what YOU will do or not do. You are the person you own. You don’t own them and they don’t own you.

Practice kind but firm responses: "I know you love me and want to help. I am so glad. My health choices have been researched and made. I won't discuss it again.”

Don’t confuse setting boundaries with trying to convince someone of the rightness of your choices. It’s a common (and understandable) desire to present the same information that led you to your choices. The problem with that in dealing with a person who has boundary issues is that engaging with content invites discussion. (Also, different people’s minds work in different ways, so your train of thought may make no sense at all to them. Wasted effort all around.)

Chronic patients often struggle with this.

The boundary is that no one else has an inherent right to tell you how to take care of yourself.

You set boundaries by doing the above: acknowledging what they said and redirecting.

Where the chronically ill may invite problems is by citing authors, studies and sites to “defend” themselves. Each time you do so, you create more time for discussion and rebuttal and send the message that your decisions are up for debate.

Don’t defend your choices beyond generalities, and then only once or twice. “My doctor is in support of my choices. Want some bean dip?” Or maybe, “Well, this is my decision. Want some bean dip?”

If necessary, look them in the eye and say simply, “I want us to have a good relationship. I want to enjoy my time with you. I’ll take care of me, so that we both can make the most of our time together. Let’s not discuss this anymore. If you bring it up again, I will have to ask you to leave.”

Finally, an important corollary to the “Bean Dip Response” is reciprocity. Once again, the content of your choices should not dictate the interaction.

You may be totally, and correctly, convinced that you should be able to determine your own activity, medication, and supplementation regime; never be left to “cry it out”; and should be allowed to follow your own weaning path, if any.

But, if you post those opinions on Facebook (or communicate them in other ways), you invite (and therefore solicit) feedback and advice. Post accordingly and respond to comments with that in mind. You need to give the “other side” the same respect that you expect to receive.

Credit for original: Joanne Ketch, MA, LPC, LMFTa, LCDC
http://www.joanneketch.com/ParentingChoiceBoundaries.en.html

For those of us who are chronically ill, there are people we DO need to explain ourselves to. However, these are mostly highly educated people with specialist training, and that makes it a short list indeed.

Our loved ones may believe they want to understand, but, as my mother finally admitted, “I don’t think I really do want to understand what you’re going through. I couldn’t stand to know how much pain you’re in and how rotten you feel all the time. It would drive me crazy, knowing that.”

But, hoo boy, does she ever respect my boundaries! That’s worth the world. It makes everything open and clear between us, and our current relationship reflects that.

When someone confesses their limits to me, I take it as a gift. They have told me how to protect our relationship and how to move forward with it. I appreciate that. With that subject opened, we can move on to discuss how, or if, they can connect with me in a way that works for us both. This is priceless information. I’m glad my mother had the courage to open that can of worms, because then it got very manageable very quickly.

For an ever-changing kaleidescope of visual delight, check out my Mom’s photography from all around the world at http://jldtifft.com/

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Of Mice, Medicine, and Malefactors

Older Brother and his wife, Aunt Krusty, sent me a fabulous little doohicky from a medieval town they visited. It’s a brooch of a common design element used in the Middle Ages: a tabby cat with two tails and fabulous eyebrows offering a mouse, with the legend, “visis mu” — “here’s the mouse.”

Pewter pin of tabby cat as described in text.
Close inspection shows both letter “s”s to be upside down. I’ve known a few artisans, and they like making people twist their heads around. Besides, that’s relevant. You’ll see why.

The enclosed card contains the usual wonderfully vague, semi-academic wording saying that animals with two tails (no mention of fabulous eyebrows) are signifiers of evil forces at work, but beyond that, nobody really knows what this means.

I thought some academics kept cats…?

My lovely polyglot friend Sylvie does. Sylvie is a CRPS compatriot who lost a frightening percentage of weight late last year, from which she’s still recovering. Her cat Nala has become a serial killer of the entire species Rodentia, bringing her grisly accomplishments to lay at Sylvie’s feet — or couch, or pillow — with startling frequency. Naturally, they aren’t always quite dead.

Pinto cat biting into white mouse on a lawn.
Not Nala, but a kindred spirit. Photo Tomasz Sienicki @ Wikimedia Commons.

Cats don’t have thumbs, so they don’t really get it about cooking and cupboards. All Nala knows is that Sylvie obviously needs to work on her hunting skills, but in the meantime, Nala can at least help her fatten up.

Also, cats tend to gatomorphize, just as those of us who are close to them tend to anthropomorphize. Nala has no idea that mice, gophers, shrews, and moles do Sylvie no good at all; that, on the contrary, they’re upsetting, messy, and potentially infectious. Nala thinks they’re good, and Nala cares for Sylvie, so they must be good for Sylvie.

She honestly believes that, with all her furry, loving little heart. “Visis mu! Have this great mouse!” So the slaughter continues.

Sylvie’s garden blooms, but her house is an abattoir at times. This is not a bad metaphor for explaining one of the more difficult aspects of being under a doctor’s care.

Most doctors really mean well. Becoming a physician takes an enormous amount of work, which requires great commitment to complete. It’s a hard job with ridiculous hours, especially for the first few years.

That doesn’t mean they’re all bright or gifted or even humane. It just means they believe in the value of medicine and surgery, enough to spend a decade or more learning to do it.

Line drawing of doctor going over an x-ray with patients.
There is much care and dedication among many doctors.

Doctors are intensely, let’s say, socialized to stay within the parameters of accepted practice. It keeps them out of trouble, although it may also keep them from true excellence at times.

Mostly, they love those parameters. They love having guidelines. They are truly, madly, deeply convinced of the value of the meds and procedures that they’re trained in. It doesn’t help that, if they put a foot wrong outside of those parameters and things don’t go well, they can lose everything. They are heavily incented, so to speak, to stay inside whatever they understand their parameters to be.

And, of course, the peer pressure is enormous.
And, of course, the peer pressure is enormous.

Now, this is tough for CRPS patients. There is so much variation from one CRPSer to the next, that there are NO established treatment parameters that meet the medical gold standard of being consistent, repeatable and reliable over a majority of patients.

None. Nada. Zilch. There is not one thing that consistently works well for most of us — at least nothing that comes from a bottle or an operating room. Activity, rest, hydration and nutrition all seem to be key, but even their benefits are hugely variable, and you rarely hear about them from physicians.

For a while, it was thought that COX-2 inhibitors combined with membrane stabilizers, came close to being a semi-magical bullet. (Gabapentin/ Neurontin, pregabalin/Lyrica, and so on, are known to most patients as anti-seizure meds, but many healthcare providers call them membrane stabilizers.)

Then it turned out that the Dr. Scott Reuben, the physician who popularized that treatment, was making the numbers up (here, reported to his colleagues and here, reported to science fans.)

Old poster of a show called, "Pinocchio, the tale of a marionette"
He was so busy being a puppet of the drug companies paying him, that he forgot what it means to be real.

COX-2 inhibitors were given a general thumbs-down over cardiac effects (which many people with chronic CRPS have enough trouble with anyway) and, as peri-surgical meds, did not live up to Reuben’s promise that subsequent chronic pain would be less.

Ironically, it had already been established that 500 mg of vitamin C two or three times daily for 3 months after surgery does have significant demonstrated benefit, reducing the incidence of CRPS – the most intractable and severe form of chronic pain – by 35-80%, depending on the extremity, extent of injury, and probably the degree of compliance. Moreover, vitamin C is very cheap, as well as very effective. (See extensive links list below.)

The anti-seizure meds, unfortunately for pain patients, did not get removed from first-line treatment.

By then, unfortunately, whole nations (Great Britain and the Netherlands, take a bow) had adopted Reuben’s corrupt recommendations for first-line treatment. It takes a lot more effort to undo that level of adoption than it does to hoodwink an entire sub-economy of peer reviewers and medical specialists, apparently.

The arrogantly reputable journals that accepted his work, and subsequently published other work which was based unquestioningly on his false results, are still trying to live it down. What’s interesting is that other doctors couldn’t replicate his results, so he was the only one publishing these great data… yet journals and physicians continued to publish and follow his recommendations. I do hope the journals revised their “peer-review” process to include more actual, I don’t know, reviewing, perhaps by peers.

Old cartoon of Pinocchio sitting on a pile of books, with a book open on his lap.
It took a lot of people to permit and perpetuate Reuben’s false reports. They are not innocent.

It could take decades to undo much of his damage, and meanwhile, the advancement of treatment has been down the wrong track for years, while other more appropriate avenues of treatment have been ignored or even forgotten.

So, millions of CRPS patients are being first-lined with truly obnoxious meds with iffy benefits and ghastly side-effects, rather than being examined as individuals, and assessed as to whether:

  • neurotransmitter support, most provably with antidepressants, would be more appropriate, given disease-related onset of affective symptoms (antidepressants), sleep problems (tricyclics), or dysautonomia (SNRI);
  • a short, hard attack of narcotics and aggressive PT would answer in the case of a hardy, active, or young person;
  • a proprietary or tech-based treatment, like TCMI or Calmare, are indicated for those who show active neuroplasticity or respond well to electrical stim; or
  • this person is a good candidate for ketamine protocols of one kind or another, some of which are no more toxic than membrane stabilizers.
  • it might be reasonable to try a more experimental approach which has demonstrated significant promise, notably magnesium infusions, immune globulin therapy, or temporary immune suppression.

Oops… Doctors, as a group, forgot to look at the patients in their excitement to have a designated treatment protocol. “Visis mu! Take this mouse – it’s government approved!

If you've worked with government agencies, you know why they're laughing.
If you’ve worked with government agencies, you know why they’re laughing.

But the doctors doing the offering really think this is a great idea. That’s what the guidelines say, after all, and they are evidence-based – except that that evidence was cooked.

While anti-seizure meds do work very well for some, starting with them reflexively is not reasonable: the cost-benefit profile is worse than most of the other potential first-line alternatives, due to high rates of side effects and comparatively unimpressive rates of usefulness.

Using them as a first-line treatment delays more effective, lower-cost treatment for many people in horrific pain, and, between the delay and the cognitive and neurologic side effects of this class of drugs, causes greater impairment (with higher associated costs) in far too many. It should be a second or even third line treatment, if you go by the evidence that has remained credible – taking a back seat to less fraught (not perfect, but still less problematic) therapeutic agents and interventions.

But the docs who lean on it really think it’s great.

sketch of excessively happy doctor running with a hypodermic needle
“Visis mu! Visis mu! Look – it’s a great mouse!”

Reminds me of my previous pain doctor, a competent technician with a bedside manner directly related to the patient’s appearance. He has a good reputation in his area – which tells you what a lot of rubbishy practitioners there were in the area.

He wanted to shove into the neck of my spinal column a couple of widgets which were the size of Starbucks drinking straws – you know, those really fat ones that you could suck a steak through, if it’s tender enough. Two of those, jammed into a six-inch length of a space that didn’t have enough room for one, and which – as we now know – was already inflamed in much the same way that the spinal cord of someone with a spinal cord injury is inflamed.

He liked it because shoving surgical hardware into other people’s bodies is what he does best, and these widgets have embedded electrodes which could zap the pain signal at the spinal root of my arms and he thought it would work really well and I had the right psych profile for it and this was the greatest thing since sliced bread.

"Visis mu! Visis mu! This is a truly excellent mouse which I am shoving smugly up your spine!"
“Visis mu! Visis mu! This is a truly excellent mouse which I am shoving smugly up your spine!”

It was a nice idea, and, again, this particular thing works spectacularly well for some people. For me, not so much. In fact, it was a disaster. It was truly worse than the CRPS pain, which takes some doing. The equipment trial still gives me spasms due to the mere memory of the staggering physical trauma it entailed.

Truly, each of us is unique.

Once he realized that I couldn’t accept his mouse, his whole manner changed. Just like a sulky cat, nursing his disappointment seemed a lot more important to him than finding something that would help me.

How could I be so callow and blind that I couldn’t appreciate this great mouse he wanted to give me? There’s just no helping some people! His neglect and disaffection was so damaging I had to fire him and move on to the excellent Dr. Richeimer at USC Pain Center, 4 hours’ drive away and worth the two-night stay in the armpit of LA.

Another dear friend, the angelically kind M, has roughly 3 dozen anaphylactic reactions a year. She is so hyper-reactive to so many things that driving past a town with the wind in the wrong direction could be the death of her. 3 dozen anaphylactic reactions a year, and she’s in her fifties now. Yes, amazing.

She saw a young cardiologist, who did what young cardiologists do: he threw upon her a huge, bloody gopher, covered in prickles and gore. “Your heart is dicky! This could kill you in a year! Visis mu, I can save you! Isn’t this exciting?”

Sepia-toned photo of a very dead, gutted gopher.
I processed this image out of respect for X’s exquisite sensibilities.

Personally, I think the appropriate thing to do is to pick that gopher up and shove it down his throat, but when a patient does it, it’s assault and battery with a biohazardous weapon.

The cardiologist, naturally, is doing exactly what he was trained to do and is wildly excited to have such a thrilling case and such interesting news. She, who already faces death on a weekly basis, should clearly get wound up about this because it might kill her if she doesn’t.

Gopher poking head out of hole, looking grumpy, with long claws and nasty teeth.
“Visis mu! This is a glorious mou — er, gopher! Check out those charming teeth, those tiny claws, that helpful expression! Awesome!

A brickbat? A muzzle? What do you think? Words simply fail. All I can think of is applying to him the kind of cat that has nine tails. It’s not a good way to model compassion, let alone tact, however.

As for me, I have to pick a primary doc for myself. My old one retired from private practice, and I miss him, because I could just walk in and look at him and he’d know.

I’m just thrilled at the prospect of training someone new, who will be a generalist treating the peripheral issues of someone with an incredibly peripheral-intensive disease. There will to be many rounds of “visis mu”, as he comes up to speed. And, since it’s all well-intended, I have to find a way to accept one or two mice as graciously as possible. One can only recoil so often before they decide they can’t treat you.

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

They mean well. They really do.

I never have figured out what to do when a cat, with every evidence of caring attention, brings me a mouse. I try to be nice about it, and that’s the best I can do.

Obit
Sadly, Sylvie’s furry little caregiver, Nala, departed this earth for the Happy Hunting Grounds. By a series of flukes, Sylvie wound up with a rescue cat, Filou (meaning roughly “brat” or “mischief-maker”), who has taken over her care with great enthusiasm — and much less bloodshed.

Links

Grouped by subject.

Sylvie’s blog on “neuroalgodystrophie”, mostly French but some bilingual French/English: http://sylvieghyselscrpsdrc.wordpress.com/

I’m shielding my friend M for safety reasons, but I can point you to a blog on managing immune suppression and chronic pain with few drugs and much natural care: http://www.tamingthebeast.ca/

Scott Reuben’s villainy, as reported to colleagues in Anesthesiology News:
http://www.anesthesiologynews.com/ViewArticle.aspx?d_id=21&a_id=12868
And in Scientific American: http://www.scientificamerican.com/article/a-medical-madoff-anesthestesiologist-faked-data/

Vitamin C after surgery or trauma, value established before Reuben’s fall:
From 1999, in The Lancet: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(99)03059-7/abstract
From 2002, in Belgian orthopedic periodical: http://www.ncbi.nlm.nih.gov/pubmed/12584978
From 2007, in the Journal of Bone and Joint Surgery: http://jbjs.org/content/89/7/1424.long

CRPS at the top of the McGill Pain Index:
https://elleandtheautognome.wordpress.com/2012/09/05/mcgill-pain-index-crps-and-fibromyalgia/

UK treatment protocols for GPs treating CRPS: https://www.rcplondon.ac.uk/sites/default/files/documents/complex-regional-pain-full-guideline.pdf

Netherlands treatment protocols for treating CRPS: http://www.posttraumatischedystrofie.nl/pdf/CRPS_I_Guidelines_patient_version.pdf

Relatively useful treatments for CRPS:
Most suggestions are pulled from the current IASP recommendations for diagnosis and treatment of CRPS or the pivotal work of Dr. R. J. Schwartzman, Dr. van Rijn, and Dr. Breuhl (part of the team that developed the IASP guidelines), with updates from recent science available on PubMed.

Dr. Robert J. Schwartzman’s seminal works..
Outstanding primer on CRPS and what it can do in Systemic Complications of Complex Regional Pain Syndrome
Neuropsychological deficits associated with Complex Regional Pain Syndrome

Dr. van Rijn’s Spreading of complex regional pain syndrome: not a random process

IASP current recommendations: http://onlinelibrary.wiley.com/doi/10.1111/pme.12033/full#pme12033-sec-0023
Simplified diagnostic tool using IASP criteria: http://biowizardry.info/wp/2014/12/the-hidden-simplicity-of-diagnosing-complex-regional-pain-syndrome/

The authors have their blind spots and biases, of course, so researching any therapies that sound interesting is a good use of time.

The National Library of Medicine at the National Institutes of Health (U.S.) is an outstanding clearinghouse of articles from peer-reviewed scientific journals: http://www.ncbi.nlm.nih.gov/pubmed/?term=complex+regional+pain+syndrome
Just add the term of the treatment you’re interested in to the MeSH term, “complex regional pain syndrome”, to maximize useful hits.

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TV, inappropriate sensory stimulation, and when enough is enough

TV flickers at a rate guaranteed to put the higher cognitive functions to sleep. LINK It is literally, and specifically, hypnotic. Anyone surprised?

Some people like that, although I don’t. Some people need that, at least in some measure.

Every waking hour when you’re at home? There’s a problem there, even when you don’t share a house with someone with longstanding CRPS.

I learned to hear the words behind the words when I was an ER nurse. I had to be able to know the truth from the lies to the self, the lies to others, and the lies to the universe. I had to know when people didn’t care if they were lying or not.

Our brains can split the channels of verbal communication, so that the literal meaning of the words goes into our brains via one logical branch, the subtext and connotations of those words go into another, the emotional load the person is trying to convey goes into a branch that analyzes conscious manipulation, and the emotional load the speaker feels about what they’re saying — or if they’re even paying attention to it — goes in via a subtler branch. I learned to parse it quite specifically.

Some people thought I was reading their minds. I was just hearing their speech.

Now you know why, much as I loathe and despise the modern Democratic party, my outraged contempt for the modern GOP (and all its wacky little offshoots) is even greater. The sound of all those relentless, delusional lies is unbearable to me.

My mostly lovely partner, J, has TV again for the first time in a couple of years. Like the Scot that he isn’t, he wants to get the most out of his monthly investment — or that’s his excuse. In any case, he has perfected the most effortless way to get me out of the house: keep the TV on.

Every.
Waking.
Hour.

There are only so many times you can argue about the same thing before you realize you’re utterly screwed, and the most important person in your life is just going to torture you until something breaks.

No wonder I can’t get any work done. It’s too darn cold to be outside for long, so I have no choice but to have my brain beaten into a pulp day after day.

I can’t get the message through to him about what it does to me. He thinks I’m being dramatic or controlling, “because that’s how women are.” (Yeah. I know. Living with someone with CRPS is hard, and he uses the “woman” excuse to think about something besides the fact that this is such a hellacious disease. Moving right along…)

It’s not how *I* am. I’m a weird woman, I readily admit it, but I am not interested in interfering in someone else’s self-medication, as long as it does no harm to others.

That’s a major freaking caveat.

My ears have been ringing for days now. Early hearing loss runs in my father’s family, and the absolutely relentless natter of evasions, irresponsibility, bad acting and recreational conflict are doing significant damage to my hearing mechanisms, not to mention what’s left of my capacity for reason.

And J wonders why I’m getting more unhappy and short-tempered.

Dad protected his hearing and commented on his symptoms and how he treated them. He swore off music and TV for days when his ears started ringing. Moreover, as heads of the family, he and my mother limited TV time to two hours a day.

Lucky cuss.

When J and I leave this area, he thinks we’re going to live in a trailer or something as we wander around the country. While 90% of that is a fine idea (as long as I’m strong enough), we are definitely going to have to solve the TV problem. Personally, I’m preparing to “accidentally” drop something heavy on all the TVs in the vicinity, and apologetically give him a small laptop set that doesn’t even have speakers, just a headphone jack.

I think I could just about live with that.

P.S. It’s worth noting that, every time I write a post about J, I read it to him before posting. I don’t sneak around behind his back at all.

His comment halfway through: “Okay, I’m prepared to split this 50:50.”
His comment at the end: “Okay, I’m just off to go kill myself.”

I think it might have finally penetrated.

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Un Crossed

Note – For legal reasons, this article is explicitly labeled an opinion piece. Quotes are used with prior permission of the author.

I’ve written of bereavement, suicide, the fact that CRPS is not imaginary (the whole point of this blog), and the true mortality rate of CRPS.

Now it has all come together.

Cross Y. was a friend of mine. He wore his heart on his sleeve — there was no deception about him, no malingering, no lying, no selfishness. Selfishness was something he needed more of, and tried to aspire to, because he forgot his own needs in the face of others’. His kind and loving heart poured forth upon his CRPS kindred and those he loved, often in scintillatingly original and muscular words.

He was injured at work. You’ve seen the news about corruption in New Jersey. Add to that the corruption of the Worker’s Comp system, and try to imagine for one minute what that might be like.

July 8, 2013
The truth will set me free,
Kill your dreams,
have nightmares for the rest of your days,
Welcome to New Jersey,
we stand our ground,
unite and become one sound,

The truth will set me free,
technology,
paper trial was the beginning,
soon the end,
your dark tunnel will remain,
Yes this once holy man,
once believed,
now a fucked up memory,
many joined,
happily crucified,
only one will remain,
your future is in vain,
your lies you cannot hide,
you may run,
change your name,
DNA will remain.

The truth will set me free,
Kill your dreams,
have nightmares for the rest of your days,
Welcome to New Jersey,
we stand our ground,
unite and become one sound.

Cross Y 7/6/13 1.21pm

He was a good-looking young Middle Eastern man, so of course, the New Jersey cops figured he was dirty from the get-go.
Cross solo
Then his brother, who didn’t believe he had this disease, became a cop, and things got worse still.

I watched his family dynamics transform as his marriage with a green-card seeker fell apart, then his beloved family started to fail him, and then he spent the best part of a year fighting to survive in an increasingly hostile and impossible hail of abuse, predation, invasion, and brutality.

The system failed him. His lawyer failed him. His family failed him. The original newspaper articles, based on interviews with his family, trivialize and brutalize still further the brightest mystic-poet I’ve ever known.

I’m grieved. More than that, I’m furious.

I had to watch as his extraordinary resilience was pushed and pushed and pushed until every strand of rubber broke.

I had to watch as his stumbling command of English prose was used to throw away the meaning behind his words. Judges and doctors alike could hardly be bothered to listen, and certainly couldn’t be bothered to believe him. Those of us who knew him had to watch as his posts wove between intelligent determination and raging despair, as time after time after time he was thrown back from what properly belonged to him.

His wife stole $30,000 of disability checks. His wife dumped him as soon as her immigration status was assured. His wife pushed him down off his weak leg.

Guess who went to jail? It wasn’t his wife. Try to imagine cold, sharp steel cuffs snapping tightly on CRPS wrists. You can’t. The world isn’t supposed to be large enough to hold that much pain.

August 6, 2013
The color of my eyes have become

the mountain I cannot climb,
the west brings the rainy days,
the east brings the heat,
So I wait,
I’ll give you my night,
I’ll give you my site,
I’ll give you my last breath,

The color of my eyes have become

the mountain I cannot climb,
Realities exist,
Unwinding occurs,
Petals unfolding,
Protecting what’s remaining,
Adapting each day,
Earth is distributing,
New sign,
New rhythm for humanity,
Being Bold,
Voice your feelings,

Full moon of greatness,
Hidden lights reflecting,
Fire resurrecting,
Slumbering beliefs,
Illusions of the underground,
Transformation of natural field,

The color of my eyes have become

the mountain I cannot climb.

9.42am 8/6/13 Lost soul

His brother’s police pals broke into his room (or were let in by his parents), stole his thumb drive, plowed through his poetry and his belongings, took his personal belongings, hacked his hard drive and his accounts. When he said he was going to install a spycam for evidence, his parents got him involuntarily committed to a public psychiatric hospital in New Jersey. They did not treat his CRPS, which was, after all, all in his head. They treated delusions that didn’t exist and a paranoia that was a perfectly rational response to his ghastly situation.

He got in line for emergency housing, but the wait list was at least 6 months long — for emergency housing. A combination of Governor Christie and Hurricane Sandy saw to that. The emergency housing and homeless shelters in New Jersey have been utterly gutted.

Three weeks ago, his father attacked and strangled him at a barbecue, in front of others. He posted a picture of himself afterward, with a bleeding bruise under one eye and big red welts around his neck, with the distinctive engorged look around the eye-bones (remember this is a former Emergency nurse writing this.)

His mother stood by and watched.

Someone called the police.

The partygoers disappeared.

His mother told the police that her husband had not attacked Cross, but that Cross had attacked her — with a knife.

Guess who got the handcuffs…

In private, she later apologized, and said she’d write a statement retracting the police report and her statements behind the psychiatric report.

She reneged.

He was living with people who were actively trying to destroy him. His work was being invaded and stolen. His life was in danger. Not even his dog’s life was safe.
Cross and his dog Leo
He had a sign posted in the rear window of his car: “We burn until there is a cure for RSD/CRPS.”

With perfect logic, he burned his car, before jumping to his death in the most beautiful part of the state. Of such indelibly poetic actions are myths made.

For him, there was no cure.

July 7, 2013
They Murdered me, I never

committed Suicide….

This disease is not imaginary. He was not crazy. He was perilously sane. He was a warm and loving soul with a shining gift of a mind, trapped in a fatally tightening spiral.

All he is now is a tragically truncated memory. What’s left is what we can scrape together of his work from our online conversations.

They keep saying he died of suicide. That’s not true. He died of torture: CRPS, institutional murder, and child abuse.

I. Am. Furious.

Cross, however, is finally at peace.

Reaching the Universe

Silence the past,
Silence the worries,
Silence the outside,
Silence the future,
Silence the self,
Silence the noise,
Silence the people,
Silence the voices,
Everything has left,
Faith in the now moment,
Faith that I am present to myself,
You are stripped,
You are Free,
You are Pure.
You are reaching the universe.

– Cross Y

Rest in peace, my darling, shining brother.

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The Red Pen Technique (dramatic music, please)

This is probably the simplest, most powerful tool for getting your complex care back into the realm of sanity.

It’s easier said than done, but it’s worth it. More valuable than words can say.

It’s a fairly simple 3-step process:

  1.  Get copies of your medical records.
  2.  Prepare: understand the records, get a colored pen, and stock up on post-its.
  3.  Mark it like you own it.

Here’s the step-by-step rundown of this process, with insider insights, tips and suggestions. (I apologize in advance for the clunky formatting. I’ll work on it.)

1. Get copies of your medical records

[Updated 3/2018 to reflect current trend towards soft copy documentation.]

In the US, you are LEGALLY ENTITLED to all the information in your medical chart. (Worker’s Compensation is a special case; you can still get copies through your lawyer or sometimes directly from the doctor, but don’t talk to the insurer about any of that.)

To get copies,

A. Call the hospital, clinic, or office and ask for the Medical Records department.

B. Ask what their process is for obtaining copies of your medical records. Most MR departments are honest, understaffed, and extremely literal-minded. Be clear, frank, and polite-but-not-wimpy; that seems to work well with the MR mindset.

i. Some will let you come into the office and make your own photocopies. They may charge you for the copies. Some may have soft copy they can send you on a CD or provide a secure way to download.

ii. Some don’t allow non-staff into the department and will make the copies for you (and it’s best to provide them with a list of what you want, so they don’t provide you with the usual thin, doctor-oriented version. More on that later.) They will probably charge you for pulling the record, making the copies, reassembling the chart, and packaging your copies up for you. They might fax them to you, but, if they don’t require you to come in personally and show ID, then the chart copy is usually mailed or FedExed. Soft copy may be free or cheap. Ask about the cost for each method, and if they don’t offer the method you want, ask if they can provide it anyway.

iii. Some will give you the runaround. In that case, be polite but firm, and let them know that you have a legal right to the information in your chart, so let’s figure out how to get it to you. (Never buy into a power struggle with petty power weilders. Just refocus on the goal — like with toddlers.)

iv. If you had films of any kind (X-ray, MRI, CT scan, ultrasound), ask how to get those films. You usually get them directly from the Radiology or Sonography department rather than Medical Records. They’re most likely to drop a CD in the mail for you. You’ll need software that can view DICOM images — do an internet search to find the best current free application for reading DICOM files.

The radiology departments no longer use film. They used to recycle it every 2 years, so the only way to keep those records was to get the physical films and hang onto them despite promises they’d demand to return them. That didn’t mean you were any better or that the film was irrelevant in two years!

C. Follow the instructions they give you for getting those copies. Be sure to request copies of the following:

i. Doctor’s notes, both narrative notes and forms.

ia. Consults’/Specialists’ notes. (Yes, they need to be specifically requested in some facilities.)

ii. Medication orders. This is what was supposed to be given.

iii. Medication Administration Record (MAR.) This is what was actually given.

iv. Nurse’s notes, both narrative notes and forms. (These days, some places only have forms.) These should include Nursing Diagnoses (which gives a good idea of just how worried or confused they were about you) and daily tracking of what care was needed and provided.

v. Vital signs and intake/output sheets. (Includes fingerstick blood sugars when used.) This is usually background information, but every now and then there’s a nasty surprise. There is no substitute for the clarity and simplicity of this info.

vi. Results of tests. These include labs taken from your blood, urine, stool, saliva, tissue samples, or whatever else they examined. It can include psych tests, behavioral tests, and any other test.

vii. Readings. This refers to what a trained specialist concluded from looking at your films, ultrasound, EEGs, EMGs, EKGs, and so on. It’s usually a couple of paragraphs.

viii. Rehab notes: narrative notes, test results, and forms. This is what your PT, OT, and other rehab specialists saw.

ix. Discharge planning notes. Discharge planning is supposed to start as soon as you’re admitted. These notes will tell you what they knew or assumed about your context and abilities. Very useful info between the lines.

x. List of charges. This is what they’re telling the insurance company they did for you and how much it cost. This should include pharmacy charges as well as “floor” charges. Another place to find both corroborations and surprises.

xi. If they say, “Would you also like [something else in the chart]?” The right answer is usually, “Why yes, thank you, that would be helpful.” Sometimes they offer it because they’re so detail-oriented, but sometimes they offer it because it fits into the pattern of the care you received. Feel free to ask why they suggested it or what it relates to.

D. When you get your chart copy, either scan it into your hard drive before you do anything else, or make 2 more copies and put the original (clearly labeled) somewhere safe.

Some people consider this step optional. I won’t argue with someone else’s working style or legal situation; you’re the one best-qualified to decide how protective to be of your chart copy.

I have everything on my hard drive. I have dealt with a hospital, a federal agency and an insurance company that forgot, mislaid, misread, or destroyed part or all of my chart. I don’t trust any institution to get it right any more.

2. Prepare

When your original copy of your chart is as safe as you want it to be, take a copy to mark up. This is where the real fun begins.

A. Read the whole thing over once. Try not to get bogged down — this quick run-through will help you familiarize yourself with the lingo and the special way of thinking that’s used in the health care field. It will also give you an overall idea of what you’re working with and will shine a light on the most obvious gaps — in your knowledge or vocabulary, or in theirs. Put flags in the strangest, most egregious or excitiing parts, so you can refer to them quickly. Use post-its to comment on the page.

B. Whether or not your first read-through is quick, your second read-through will be a LOT more informative. Pick out and investigate the obvious holes in your own knowledge, looking up words and concepts that aren’t clear, or checking your assumptions about what they meant.

C. (You can start doing this in 2.B., but you’ll be better-equipped if you wait until you’ve got your vocabulary and assumptions squared away.)

GRAB A COLORED PEN. Mwahahahahahahaaaa!

Red, green, dark  pink, and medium purple are all great, because they stand out so well from the black and grey of the copy. Use a color you enjoy commenting with, in a pen that feels good to write with.

No black. No grey. Blue if you must, but it’s a very “normal” color and easy to overlook.

3. Mark it like you own it

Now that you’re prepared, are familiar with the chart, have the hot spots flagged, and know the vocabulary, you’re ready to TAKE BACK YOUR CARE.

A. Go through the chart with your colored pen.

B. Mark everything that is wrong, misleading, or unclear. (Feel free to color-code, if that works for you.)

C. Comment on:

i.  what the real deal was,

ii. what was wrong with what they wrote,

iii. your own observations,

iv. any evidence or witnesses,

v. and — this is usually relevant! — where else in the chart this error, confusion or lie is brought into question. (This is why you get the nurse’s notes. They tend to be accurate, front-line reportage of what happened at the bedside.)

Generally, you can keep emotions out of it. The facts WILL tell the story, and the reader’s own emotions will fill in the blanks.  If you can do this, then you will wind up with a much more powerful piece of documentation than if you’d given into the natural urge to editorialize. Sometimes, if I’m just too mad, I editorialize (and use expletives and call names) on separate paper, then, when I’m calmer and my thoughts are clearer, I go back and write in a calmer note.

D. Write (or tabulate, or draw; whatever works for you to nail your understanding) a summary of issues with the chart.

i. Pick out major issues, overarching issues, and the points where things really should have gone differently. (If you’re writing, use headings — that impresses the heck out of people.)

ii. Summarize the whole thing in a paragraph or two at the end.

4. Now what?

It’s up to  you. You have documentation that is worth presenting in court. (Yes, believe it or not, you can talk until you’re blue in the face and be only tolerated, but if you really want to persuade highly-educated people, then put it in print — with annotations. They will believe exactly the same thing in print, that they’ll be incredulous of when you speak.)

Regardless of what happens next, you will have a whole new approach to medical care. Your perspective on the whole business will change as a result of doing this exercise. You will be much more collegial with your doctors — much less the supplicant praying for something beyond your control. You will speak about your care with more clarity and authority, and your care providers will respond to that, usually with more forthcoming-ness and respect.

Depending on the issues involved (and whether your case is already part of a legal process, such as Worker’s Comp), you can:

  •  Send a (color?) copy to  your attorney. You can always do this. It’s guaranteed to get some attention, and your attorney is liable to  respond well to the nonverbal message that this is important enough to you to go to all this effort. That’s a big deal. Most clients of attorneys are kind of helpless. You set yourself apart with this.
  •  Take it with you to your next visit with a key physician — the worst offender, or his boss, or the one who’s on your side and can help you figure out how to proceed most effectively. Be prepared to let the “good guy” take a copy, and consider bringing a copy for the “bad guy” since you don’t want to let your copy out of your hands there.
  •  Arrange a meeting with the facility’s adminstrators to address the hot issues. Take it with you (or scan copies and show it from your laptop — lots of tech assumptions there) and let them know, kindly and clearly, what you want them to do about it. Administrators tend to be goal-oriented, so give them a goal. Tip: If they have legal counsel present, it’s good if you do, too. In any case, it’s not a bad idea to bring a couple of respectable-looking friends (“my assistants/associates/posse”) who have faith in you, for moral support — and so you’re not all alone on your side of the table.
  •  Send a color copy to your local paper, your congresscritter, the medical board for your state, or the Department of Health, with a cover letter explaining your concerns and what you would like to see change. This could raise some attention, all right. (If your case is currently in a legal process, it may be illegal to do this. Ask your lawyer.)

If you’ve never done this before, you’re in for a transformative experience. Even if you do nothing further with it, your situation will feel very different, and you’ll find yourself facing future care with a stronger, clearer, more in-charge attitude.

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Is losing our minds to “pain brain” optional?

64% of CRPSers experience significant cognitive decline. Speaking as a member of that majority, I think that sucks. Most people with chronic pain find that they experience the following:

– Confusion: it’s harder to keep track of things like we used to.

– Forgetfulness: forget the car keys? We’re capable of forgetting the car. It’s more than a touch of early onset Oldtimer’s.

– Distractability: I got up in the middle of a sentence when my meditation exercise was playing. I forgot what I was doing netween one syllable and the next and I could NOT make myself lie down again.

– Locked focus: once I do get into something, it can be impossible to tear myself away, even if I need to move or stretch or calm a racing heart. It’s *weird.*

– Memory: Forgetting the car? Sometimes I forget my birthplace. There are random, shifting holes in my long-term memory that I can’t do anything about, except waffle and flannel until the subject changes. Learning anything new that isn’t related to CRPS or writing (which my brain seems to have anchored with industrial grade mooring chains, so far) is pretty much doomed.

– Intense, driving feelings: catch me on a bad pain day and discover a new word for female dog, and it’s not because I want to be like that, but my internal brakes are off and everything feels like the emotional equivalent of flashing neon.

– Oversimplifying/black-and-white thinking: this was one of the first issues we addressed in my functional restoration class all those years ago. Without constant checking, chronic pain makes everything MUCH more intense, and maintaining middle gears is a constant job.

– Poor sleep. Trouble waking up. No duh.

 

Now, just for grins, let’s look at the list of symptoms for AD/HD:

– Difficulty tracking complex ideas/confusion

– Forgetfulness.

– Distractability.

– Locked focus.

– Memory issues.

– Intense, driving feelings.

– Oversimplifying/black-and-white thinking.

– Poor sleep. Trouble waking up. Hel-lo!

 

Is it just me, or is there a wee bit of overlap here?

 

Classically, ADD (or ADHD, or AD(optionalH)D) is not considered an aquired disease. However, I noticed that the parts of the brain that ARE distorted in ADD are some of the same parts of the brain that GET distorted in CRPS — and perhaps in other types of chronic pain.

 

We aren’t making these symptons up. We struggle mightily to keep our symptoms under some kind of control, but the worse this particular family of symptoms gets, the closer it gets to impossible to keep it under control.

 

Fortunately, ADD (et alia) has been treated successfully for years. The meds used overlap with meds used for neuropathic pain, depression and dysautonomia (because it’s all about regulated nerve signaling); the techniques overlap with the techniques for handling CRPS, dysautonomia and chronic pain (see my last two posts); and the therapy follow-up ties into the fact that ongoing counselling is part of the gold standard of treatment for CRPS, and darn well should be for chronic pain.

 

This is solvable. Let’s get our brains back, because life is too short for this to be allowed to continue.

 

When I get my scientific studies lined up, I’ll rewrite this for my bioscience blog. Feel free to take it to your doctor.

 

We can do this.

 

Meanwhile, borrow a couple of books like “you mean I’m not lazy, stupid or crazy?” and “delivered from distraction”, and see if it doesn’t take a load off your mind to recognize that there IS a way forward.

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Pain rating scales that describe reality

I’m filling out paperwork for these assessments. It’s a lot of homework, especially since they didn’t provide anything I could edit in softcopy. (Wait… how long have computers and the internet been around? Doesn’t the ADA require hospitals to provide access? … ok, never mind. Anyway.)

 
I got to the usual 1-10 pain rating scale and my gorge rose. That’s so irrelevant to my life now that I can’t even throw a dart at it.

 
Between my self-care strategies and spectacular mental gymnastics, the level of what most people would experience as “pain” is a secret even from me, until it’s strong enough to blast through the equivalent of 14 steel doors, each three inches thick. At that point, the numeric level is off the charts.

 
What’s useful and relevant is how well I can cope with the backpressure caused by the pain reflexes and the central and peripheral nervous system disruption this disease causes.

 
You can read on without fear, because for one thing, it’s not contagious, and for another, your experience of pain — whether you have CRPS or not — is uniquely your own. This is mine, as it has changed over the years…

 

Step 1: Acute CRPS, with otherwise normal responses

My first pain rating scale, just a few years into the disease’s progress, was suitable for a normal person’s experience. My experience of pain was still pretty normal (apart from the fact that it didn’t know when to stop):

Mental impact

Physical changes

0

 

No pain at all.

 

1

 

Hurts when I stop and look.

 

3

3

Neither looking for it nor distracted.

 

5

5

Noticeable when concentrating on something else. 

Nausea, headache, appetite loss.

7

7

Interferes with concentration. 
Drop things, grip unreliable.
8

8

Difficult to think about anything else. 

Trouble picking things up.

9

9

Makes concentration impossible. 

Interferes with breathing pattern.  No grip.

10

Can’t think, can’t speak, can’t draw full breath, tears start –  or any 3 of these 4.

Unrated even numbersindicate a worse level of pain than prior odd number, which does not yet meet the criteria of the following odd number.

Note that weakness is only loosely related to pain.  I drop things and have trouble picking things up at times when I have little or no pain.  However, as pain worsens, physical function consistently deteriorates.

Notice how the scale ties the rating numerals to physical and mental function. This is crucial, for two reasons — one personal and one practical:

 
– Personally, I can’t bear to let misery get the better of me for long. Tying the numbers to specific features keeps the awful emotional experience of pain from overwhelming me. Making the numbers practical makes the pain less dramatic.

– Practically, in the US, health care is funded by a complex system of insurance. Insurance companies are profit-driven entities who are motivated not to pay. They don’t pay for pain as such, only for limits on function. This makes my pain scales excellent documentation to support getting care paid for, because MY numbers are tied to explicit levels of function. (Hah! Wiggle out of that, you bottom-feeders.)

 

Step 2: Early chronic CRPS, with altered responses

My next was upwardly adjusted to describe learning to live with a higher level of baseline pain and noticeable alterations in ability:

Mental impact

Physical changes

3

3

Neither looking for it nor distracted.  Forget new names & faces instantly.

Cool to touch @ main points (RCN both, dorsal  R wrist, ventral L wrist). Hyperesthesia noticeable.  .

5

5

Interferes with concentration.  Anxiety levels rise.  Can’t retain new info. Can’t follow directions past step 4. May forget known names.

Nausea, headache, appetite loss.  Grip unreliable.  Hyperesthesia pronounced. Color changes noticeable.

7

7

Absent-minded.  White haze in vision.  Can’t build much on existing info.  Can follow 1 step, maybe 2.  May forget friends’ names.

Drop things.  Cold to touch, often clammy. Arms & palms hurt to touch.

8

8

Speech slows.  No focus. Behavior off-key. Can’t follow step 1 without prompting.

Can’t pick things up; use two hands for glass/bottle of water. 

9

9

Makes concentration impossible.  Hard to perceive and respond to outer world.

Interferes with breathing pattern.  No grip. Everything hurts.

10

Can’t think, can’t speak, can’t stand up, can’t draw full breath, tears start –  or any 3 of these.

Notice how specific I am about what general tasks I can complete — following instructions, lifting things. These are the fundamental tasks of life, and how do-able they are is a fairly precise description of practical impairments.
 

Step 3: Established chronic CRPS

And my third changed to describe living with more widespread pain, a higher level of disability, and — most tellingly — a physical experience of life that’s definitely no longer normal:

Mental impact

Physical changes

3

3

Neither looking for it nor distracted.  Forget new names & faces instantly.

Cool to touch @ main points (RCN both, dorsal  R wrist, ventral L wrist, lower outer L leg/ankle, R foot, B toes). Hyper/hypoesthesia. Swelling.

5

5

Interferes with concentration.  Anxiety levels rise.  Can’t retain new info. Can’t follow directions past step 4. May forget known names.

Nausea, headache, appetite loss.  Grip unreliable.  Hyper/hypoesthesia & swelling pronounced. Color changes. Must move L leg.

7

7

Absent-minded.  White haze in vision.  Can’t build on existing info.  Can follow 1 step, maybe 2.  May forget friends’ names.

Drop things. Knees buckle on steps or uphill.  Cold to touch, often clammy. Shoulders, arms & hands, most of back, L hip and leg, B feet, all hurt to touch. L foot, B toes dark.

8

8

Speech slows.  No focus. Behavior off-key. Can’t follow step 1 without prompting.

Can’t pick things up; use two hands for glass/bottle of water.  No stairs.

9

9

Makes concentration impossible.  Hard to perceive and respond to outer world.

Interferes with breathing pattern.  No grip.  No standing.  Everything hurts.

10

Can’t think, can’t speak, can’t stand up, can’t draw full breath, tears start –  or any 3 of these.

 

The CRPS Grading Scale

The other scales measure the wrong things now. Asking me about my pain level is bogus. It would have the asker in a fetal position, mindless; is that a 5 or a 10? Does it matter?

 
I need to avoid thinking about depressing things like my pain and my disability. I focus pretty relentlessly on coping with them and squeeezing as much of life into the cracks as possible — on functioning beyond or in spite of these limitations.

 
The fourth rating scale is much simpler than its predecessors. It’s based, not on level of pain or disability, but on the degree to which I can compensate for the disability and cope past the pain. Therefore, this rating scale remains meaningful, because it describes my actual experience of life.

Mental impact

Physical changes

A. Coping gracefully

(baseline)

Track to completion, baseline memory aids sufficient, comprehend primary science, think laterally, mood is managed, manner friendly.

Relatively good strength and stamina, able to grasp and carry reliably, knees and hips act normal, nausea absent to minimal, pulse mostly regular.

B. Coping roughly

B

Completion unrealistic, extra memory aids required and still don’t do it all, comprehend simple directions (to 3-4 steps), think simply with self-care as central concern, unstable mood, manner from prim to edgy to irritable.

Moderate strength and stamina, grip unreliable and muscles weaker, balance goes in and out, knees and hips unreliable, nausea and blood sugar instability alter type and frequency of intake, occasional multifocal PVCs (wrong heartbeats) and mild chest discomfort.

C. Not coping well

C

Hear constant screaming in my head, see white haze over everything, likely to forget what was just said, focus on getting through each moment until level improves, manner from absorbed to flat to strange, will snap if pushed.

Muscle-flops, poor fine and gross motor coordination, major joints react stiffly and awkwardly, restless because it’s hard to get comfortable, unstable blood sugar requires eating q2h, bouts of irregularly irregular heartbeat.

D. Nonfuntional

D

Unable to process interactions with others, suicidal ideation.

Unable either to rest or be active. No position is bearable for long.

There is no Grade F. Did you notice that? As long as I have a pulse, there is no F, which stands for Failure.

In the words of that divine immortal, Barrie Rosen, “Suicide is failure. Everything else is just tactics.”

So what’s the point of all this?

Documenting our own experience in terms that are meaningful and appropriate advances the science. The treatment for this disease is stuck in the last century in many ways, but that’s partly because it’s so hard to make sense of it. The better we track our experience with it, the better outsiders can make sense of it.

 
Since studies, and the funding for them, come from those who don’t have the disease, this is the least — and yet most important — thing that we can do to improve the situation for ourselves and those who come after us.
 

This isn’t a bad snapshot of the natural history of my case, either. Understanding the natural history of a disease is a key element of understanding the disease. Imagine if we all kept pain rating scales, and pooled them over the years. What a bitingly clear picture would emerge.

 
I’ve never sat back and looked at all of these pain rating scales together. It’s certainly an interesting mental journey.

 
Important legal note: These forms are available free and without practical usage limitations; to use, alter, and distribute; by individuals and institutions; as long as you provide free access to them and don’t try to claim the IP yourself or prevent others from using it. All my material is protected under the Creative Commons license indicated at the foot of the page, but for these pain scales, I’m saying that you don’t have to credit me — if you need them, just use them.
 

Bien approveche: may it do you good.

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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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