I’m now attending a weekly meeting of fellow pain patients in the area. It’s very good. A few things came up which I felt confident to share with the group and am now sharing with you, because the body of info is so useful… even if it’s only connected “under the hood.”
Pain care in the western New England region
Here are the local resources I can (to some degree) recommend. Those of you from other states and regions, please feel free to make recommendations in the comments! 🙂
Baystate Pain Management
There’s a Pain Management Center in Greenfield, MA, which I never knew about. It describes itself as “interventional”, meaning their focus is on procedures and injections and the like. (This means they aren’t currently doing much with the material mentioned in the Readings heading, but that may change in time.) They also provide PT and acupuncture, the latter only at the Springfield site. https://www.baystatehealth.org/services/pain-management-center
The Springfield site is the old home of a doctor I’ve mentioned before and don’t want to mention again. I noticed they don’t list staff on their current web page, but I do intend to follow up and learn a bit more about their current practitioners.
My doc, Lloyd Saberski, is intellectually conservative, and will do nothing that has a fair chance of hurting the patient. (Since I tend to be more gung-ho, I consider his approach a necessary complement to mine.)
There are a couple of other specialties (stem cell treatment and a weight-loss thingy) attached to the clinic, which is probably how they stay in business despite putting something as rare, time-intensive, & low-paying as advanced pain diagnosis at the center of the practice. I have never had the least hint of being nudged towards either of those; rather, Dr. Saberski specifically mentioned once that stem-cell treatment was still an immature modality with only a few conditions it was proven for, and that it would be totally unsuitable for me. Despite my poundage, he has never mentioned weight-loss, not even with a glance.
Readings on brain plasticity, with guidance on pushing back
I consider this the best lowdown on trauma gets put in place into the brain & body (and why this shows that Worker’s Comp and the insurance industry are specifically trying to destroy us, so don’t buy their evil story about you): “The Body Keeps the Score” by Bessel van der Kolk
It’s pretty science-y, so feel free to start with other authors like Pat Ogden or those listed below.
He’s a doc who developed central pain in himself, realized the current medicine on it was, um, let’s call it ill-informed, and eventually turned his extensive study on the subject into accessible material for the rest of us. He’s a good story-teller with an eye for the compelling detail that makes his point. He has two books out, both of them excellent, informative, and inspiring, avoiding all the usual pitfalls of physicians who like to write. He stays on topic, refers to the science, defers to the patient’s experience, and each side-trip turns out to be relevant and interesting.
I now mentally push my pain back up my spine and squish down on the pain regions in my brain every time I think of it 🙂 Week 2 — 4 more to go! Read more from him to understand what that’s about.
Credited with developing one of the most-recognized techniques (called EMDR) for accessing the neurobiology of distress and reprogramming the mind/body response to it. Some of her work is very clinical, and some of it is designed for anyone to pick up and use for themselves. Be aware that EMDR techniques tend to be multi-stage processes, and the “at home” techniques involve a little advance work to set up your mental safety-net. (I did that during my designated meditation time, which I use for any solitary mental healing work.) With that done, you have a lot of options later for catching yourself and quickly restoring your ability to cope.
An outstandingly practical person with tremendous insight and depth, she is one of the founders & leaders in the field of understanding how ghastly experiences interact with the brain, and how the individual can get consciously involved and get back in control of these systems.
Note: These last two skillful practitioners produce, not only video clips and their defining books, but also accessible articles, textbooks, narratives, and workbooks for both professionals and patients. This provides many ways to get into their information, whatever your sensory learning mode and attention span, so you can see what works for you.
A lucid speaker and explainer with many videos and a couple of books, especially (but not exclusively) for brain-science nerds. He co-authored several additional books that turn his theory into practical tools and techniques to use in real life. He focuses on hot issues for painiacs and those who love us: re-training our brains to identify and embrace the feeling of safety, developing healthy relationships in spite of twitchy brain responses, and re-developing our neurological coordination so we can get back in charge of ourselves.
Multiple access-points to get to the same root issues of healing our neurobiology
These brilliant practitioners have come up with different ways to access and engage with our natural neurobiological wiring, in order to manage our own brain and body responses better. Many of them focus on trauma recovery rather than the ongoing disruption of central pain etc, but, where that’s the case, I mentally edit for ongoing “trauma” (which ongoing pain is, strictly speaking), and I find considerable insight and useful techniques there. Great stuff. Also, if you’ve had awful things happen in your life, you may find a useful healing approach in one or more of their works.
Resources & info in this blog
I’ve been keeping a blog for ~9 years, though the earlier years got lost in a move. (Just as well; I was flailing.) Questions I could probably bore you to tears answering in person…
As I say elsewhere in this blog, it’s a bit of work to generate the first set of documents, but maintaining them is easy, and the payoff in personal poise and doctor response is tremendous.
Why is sitting in a moving car for hours so rotten?
Oh, boy, let me tell you what I’ve found about this! I think of it as 4 main issues, each of which I’ve developed ways to mitigate for my own case:
Our skin (where all those peripheral nerve sensors hang out) is hardly moving and half of it is pretty much unable to breathe, due to the mechanical pressure of our limbs against our bodies and the seat against our backs & thighs.
Hungry skin, with cellular & intestinal metabolic waste building up, no way to flush itself, with unhappy sensors, makes for serious discomfort.
I find a good song and dance & gently gyrate in my seat :))
Believe it or not, cars (especially American cars, sadly) are made of plastics that release molecules, which is called outgasing. Most plastics (including fabrics) outgas, meaning that molecules evaporate off the surface and escape into the atmosphere. These aren’t body-friendly molecules. Variously, they may interfere with endocrine (hormones) and aprocrine (sweating) activity. Many are neurotoxic, capable (depending on individual factors) of reducing impulse control, spiking irritation, and triggering emotional and physical pain. (Many of the studies around this have disappeared from the web, which somehow doesn’t surprise me. Sigh.) This lessens as cars age, but doesn’t go away as long as there is plastic, car fabric, foam, treated leather, varnish, etc, in the car.
The vehicle itself compounds all the skin stuff, and adds a constant low-dose exposure to neurotoxins.
Even in cold weather, I roll down all the windows every hour or so and purge the air in the car.
Our joints are not able to move much. The position, with the hips rotated slightly back, the shoulders reflexively rolled slightly forward to compensate, and not much room to do otherwise, is an unnatural position to be strapped into. It reduces ordinary motion, CSF/lymphatic flow, and nerve transmission, especially through the hips and spine. Our joints carry a lot of sensors, including those for blood pressure and balance; having them stuck in one position (while we’re breathing outgas, of course) makes the sensors unhappy, contributing to that general sense of yucky unpleasantness.
Unhealthy stasis in the joints, spine, and circulating body fluids, including CSF, lymph, and blood. This contributes to a central (brain & spine based) body-unhappiness.
When I’m driving alone, I stop every hour and, at least, stretch and move until I feel okay, or do t’ai chi/qi gong/yoga if I feel safe enough. When I’m being driven, we stop every 1-1/2 to 1-3/4 of an hour. We usually stop for 20-30 minutes, unless we’re in a real hurry, in which case it’s 15. I don’t tolerate less.
Mitigation bonus: stopping this often means I can get potty breaks, making it easier to stay hydrated and up on my electrolytes — which makes everything more bearable and significantly reduces recovery time.
For many of us, vibration is a problem. It certainly stimulates the nervous system, especially in the spine and feet, and wherever you’re touching the structure of the car.
Whether vibration itself is obnoxious or not, car vibration is irregularly irregular, having no consistent pattern whatsoever. This means my brain/body has no chance of anticipating or compensating for the rhythm of it, putting my body in a constant state of jolt. I find it exhausting, and it pushes up my dysautonomia as well as my pain.
Central stimulation in a relentlessly irregular vibrating pattern can be really harsh.
I adapted the inside of my car to reduce my exposure to seat outgas, improve airflow to my skin, and cut steering wheel and seat vibration to manageable levels. I also chose my car carefully to get maximum smoothness & good shocks in the first place.
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,
paper trial was the beginning,
soon the end,
your dark tunnel will remain,
Yes this once holy man,
now a fucked up memory,
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.
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,
Protecting what’s remaining,
Adapting each day,
Earth is distributing,
New rhythm for humanity,
Voice your feelings,
Full moon of greatness,
Hidden lights reflecting,
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.
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.
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
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.
I’m writing a retrospective, looking over the past year. It’s one good way to get my head out of the muddled present.
It’s gratifying to see how I’ve matured as a writer. Most of my posts this year have been solid, practical, and reasonably well-put. I don’t say that as a matter of ego (much), but as a matter of professionalism: if I’m going to be doing this, I should be doing a good job! I’m constantly trying to improve. There is always room for improvement, a fact which I find intriguing more than frustrating.
The arc of 2013 was interesting: started off very rough, so rough I had to completely revamp my pain rating scale to ignore the question of pain, and go straight to the question of function. And even that was pretty iffy. In retrospect, it was actually pathetic.
I moved out of the LA area and in with my beloved – at last! – and rediscovered fresh air and sunshine, which is a great help with the body and mind, I find.
I worked on what I had learned at USC, (here’s one and here’s another example of using those mental tricks) and, in parallel, I worked with my lawyer on closing and settling my work injury case. (I wasn’t able to discuss that at the time, as it was an open legal issue. Now, it’s not. That’s what we call foreshadowing 🙂 )
To my consummate relief and delight, we succeeded in crafting an offer that was acceptable to all parties, and we finally closed the legal aspect of this case – after almost exactly 14 years since my first injury, 12/1999.
Last week, for the first time, I was able to get my medication without needing anyone’s approval. That was a great day.
We have another move coming up in a couple of months, and the idea is to go where I can get all the massage, acupuncture, and chiropracty I need. It’s a much shorter commute to LA, which, I hope, will mean shorter recovery times from those trips.
Moreover, now that I don’t have to argue about my care, I plan to go back to “class” and try to recapture some of what I missed in 2013.
2013 was a lot of hard work, but a lot less brutal than many of its predecessors.
From where I stand, 2014 looks like it’s going to be a lot of work too, but I sincerely hope – I almost expect – to be considerably stronger at the end of it. We shall see.
Happy and painless 2014, with hopes for full remission and possibly total healing for us all! Hey, I dream big 🙂 Postscript:
My partner is becoming better acquainted with what this disease does to me. He wants backup.
I know of two of my compatriots who’ve died of CRPS this week, people I was acquainted with online. The world is poorer without them.
So, what with one thing and another, and despite the absurd snafus involved so far, it’s time to finish up my will and legally establish a durable power of attorney for healthcare. Unless I achieve complete remission, I expect my death (hopefully long since) to be attributed to this disease. My executrix knows, and I trust her to see to it. CRPS is deadly, and it doesn’t get nearly enough credit for that.
If you haven’t already done so, I encourage you to take care of these things, too. It’s very freeing, and the conversations you have around it can be useful beyond themselves.
Being better prepared for these brutal and terminal issues frees up a lot of energy for living and enjoying it. Really 🙂
I collected health info on others for years. I’m what clinicians call “a good historian” — and in the health context, it means someone who can tell you exactly what happened to them and when it happened, and they turn out to be right.
This is fine… as long as I can keep track, and as long as the story is short enough for someone else to remember after a single telling.
This isn’t going to remain true for any case over a couple of years in the making, and certainly not for a case that even started out with multiple diagnoses: volar ganglion, tendonitis, and repetitive strain.
When I noticed that a doctor’s eyes were glazing 5 minutes into my recital of events, I knew I had to do this differently.
I started keeping a timeline. It was a nuisance to set up, because I got injured at work, and U.S. law doesn’t necessarily allow me to get copies of my records under those circumstances.
So I drafted my first timeline from memory, journal entries, and my datebook, and asked my doctor’s staff, as sweetly as possible, to please check the dates for me. They loved the timeline and were happy to do so.
As you can see, this is before I had a lawyer, and reflected my personal tendency towards information overload:
As you can see, I decided to keep my timeline in a table. I found that to be the most natural way for me to organize the layers of information in a readable way. But then, I had just finished hand-coding and debugging about 21 pages of HTML tables in raw markup. Tables were easy for me!
To some people, a table of text just looks like word salad.
I can understand that.
There are other ways to organize information: brain maps, fishbone diagrams, bullet lists with nested lists, even labeled images linked together. Search any of those terms, or even terms like “information architecture” or “flow charts”, to look for ideas.
I took a later version of this to my first QME (QME=Qualified Medical Examiner, a consultant called upon when a U.S. insurance company disputes care in an injured-worker case.) Bless his stern and rock-bound heart, he gave me excellent advice. Here it is, as close to his wording as I remember:
“Leave out the insurance stuff. It’s not my department. It’s distracting, annoying, and clutters up the timeline for me.”
(I was not offended, because I’ve worked with a lot of hotshot doctors. I fully expected the brusqueness and just listened to the words for information. That information was pure gold.)
“In fact, thin this out a lot. I want facts, data, not suppositions or what you read. I want to know exactly what happened to you and what your doctors said or did. Everything else is filler. I’m a doctor, so doctors’ ideas are what I care about.”
(That was frank! And an excellent statement of inherent bias, which I really appreciated knowing up-front.)
“Take out the personal impact? No! No. I want that in there. It tells me how this really affects your life, and I should know that.”
(He was almost human when he looked at me then. It was a cool moment.)
“But I DO want the personal impact to be visually distinctive, so I can screen it out when I’m looking for the medical part alone.”
“I’d also like to be able to find your work status more easily. This is a worker’s compensation case, after all.”
That man should advise more designers. He’s retired from his medical career now, and I hope he’s enjoying himself immensely.
My next timeline, for my next QME, was much leaner and it distinguished between three key types of info: straight medical information, work status, and personal impact.
Did you notice how the hand images I wrote about before are referenced right in the timeline? This is a great way to build your case. The pictures kick the message of your disease progress and your needs right through concrete.
Incidentally, this uses mutually-reinforcing teaching principles: multiple sensory inputs, plus multiple paths to the same info, equals excellent retention. Your doctors will really be able to remember what your case looked like and what happened along the way, what worked and what didn’t.
Dr. F was pleased to see the table and thought it was basically a good idea, but looking at it through 78-year-old eyes was a different experience. He gave me his own feedback, speaking as someone who had gone through more medical records and had more problematic vision than anyone who’d looked at it yet:
“Yes, it’s nice that you picked out the work status, but I want to be able to see surgeries, x-rays, the really important stuff, just as easily. No, even more easily.”
I picked those out in bold and flagged them in the left column:
Before long, I learned to condense multiple entries so I could use one row for several visits that were about one issue, or where there wasn’t much change:
Then I saw a doctor who had more human sensibilities. He said,
“Why not use colors? I want to see surgeries and tests in different colors.”
I asked, “Do you want the different kinds of tests in different colors, so you can distinguish Xrays from MRIs from nerve studies at a glance?”
“No, no, that’s too much. I can read EMG versus MRI; I don’t want too many colors. I want the surgeries to really stand out, though. Put them in red.
“And I want to see the legal pivot-points, too, because that affects your case.”
Then the first page grew legs. Someone along the line said,
“One more thing. I’d really like to see your allergies and medical-surgical history immediately. If you could put that up front on this, that would give me the most critical medical information right off.”
That was a real forehead-smacker for me…
I used to be a triage nurse. I used to collect certain information on every patient I saw, regardless of age, sex, race, or what they came in with.
– Name, date of birth.
– Any medical diagnoses.
– Any surgery, with dates.
– Current medications and doses (if they recall), and what they take it for. (This fills in a lot of holes on the medical and surgical stuff — you’d be surprised what people forget. “Oh yeah, my heart stopped last month.” Good to know!)
– Allergies — and what the reaction is (because there’s a world of difference between something that gives you a stomachache and one that stops your breathing, and we need to know this if it winds up in the air or, heaven forbid, the IV line.)
This is basic. This is absolutely basic. It’s essential information that should be immediately surfaced on every patient’s chart. How could I take for granted that it would be easy to find in my medical record? The whole point of needing the timeline is that, after a couple of years, my medical record was a mess!
Also, after years of popping from one specialist/QME/consultant to another, I got tired of having to dig out the same demographic and billing information every time they had to generate a new chart.
I had a brainstorm: make the first page into a billing/demographic sheet, add the triage information, and start the table on its own page after that.
It all goes together on the medical chart anyway, and one of the unsung truths of medical care is this: make life easier for the desk staff, and they will make life easier for you.
After all this time, I can put my whole history with this disease into one single document that totals 10 pages.
The first sheet has my contact, billing, and demographic info.
The second has my more-extensive medical/surgical history, medications and yet more allergies, and priority notes, highlighting my CNS sensitivity and emphasizing that cognition matters most.
The rest tells all the key points of 14, yes, 14 YEARS of injury and disease, in only seven and a half pages.
Here is the final result:
Every doctor, with one exception, who has seen this, has cooed — literally, cooed — with delight. They ask if they can keep it (I tell them to put it in my chart, so they can always find it. “Ooo, great!” they say.)
This one doctor looked at it, laughed rather sardonically, and said, “You spend way too much time on this.”
Clinical note: For the record, that is not an acceptable response. What clinician makes progress by dissing patients on the first visit? Right. None. The thing to do here is ASK; in this case, ASK how much time this patient put into creating the documentation. The answer certainly surprised this one.
I set him straight, in my sweetest tone of voice. I said, “After the initial setup, it requires only a couple of minutes of maintenance every few months. That’s it. Moreover, you’re forgetting that I used to be an RN and a software documentation writer; this information is easy for me to understand and easy for me to organize. If I CAN’T do this [gesturing to the document in his hand], you need to check for a pulse.”
He never sassed me again.
However, most of what I told him is true for all of us.
We are the subject-matter experts on our own bodies. Never forget this and never let anyone tell you otherwise, because they are wrong. You ARE the subject matter expert on your own life. Nobody else really knows how you feel or what you’ve been through.
It’s in your power to communicate that clearly enough to work with. It’s just a matter of figuring out how.
Once you get a timeline set up and put in the key events so far, it takes very little to maintain. I update mine before every key doctor visit — when I see a new one or when I need to see a QME or, of course, when I think a doc is losing the plot.
It takes me less than half an hour to update contact info, meds, and current entries, and I do that once or twice a year now. That’s a great effort/benefit trade-off!
Moreover, keeping a timeline has life-changing benefits besides simplifying explanations to my doctors. Every long-term patient can see how utterly transformative these changes can be:
The doctors take me and my case absolutely seriously from the get-go (or else it’s obvious right off that this person is never going to, and I need to move on. That saves time!) It stops arguments and attitudes before they even start. It makes me almost human in any good physician’s eyes, and that’s nearly a miracle, because, generally, they can’t emotionally afford to think of their pain patients as human. (This explains a lot.)
My medical records are a lot more accurate, because the providers writing them have this great cheat-sheet right there to help them stay on track and keep their facts straight. This has saved me more grief, bad treatments, misapplied care, getting meds I’m allergic to, and chasing red-herring issues with the insurance company, than I could ever count.
I can keep my limited brain-space free for handling the appointment and looking ahead, instead of trying to wrestle my complex history into shape. This makes my visits a lot more valuable to all concerned.
I consider my timelines to be worth roughly 1,000 times their weight in plutonium. A little bit of effort has paid off thousands of times over, and made it immeasurably easier to keep this messy, protracted, brutally complex case on track for nearly one and a half decades.
Now that’s a good trick!
Put your name and the date on every page.
Put triage information (in second blockquote above) at the top.
Highlight surgeries and invasive procedures in bold and red.
Highlight tests and noninvasive procedures in a different color or style.
Highlight life impact, but keep it separate from medical info.
Attach the relevant doctor’s name to each procedure, diagnosis, or consultation.
Track adverse events.
Remember, this and all my blog work is under a Creative Commons Share-Alike Attribution license: do anything you want with it, as long as you don’t keep others from using it. I’d love it if you’d credit me with my work, but don’t let that slow you down.