Managing with one foot

CRPS tends to demineralize the bones, creating a sort of Swiss-cheese-looking osteoporosis. I’ve held that at bay so far, and I believe it relates to jumping on the vitamin D bandwagon long before I saw it in the news — I followed a tip from a friend without CRPS, who found that it kept her teeth from chipping. Well, I know why teeth chip — demineralization. So I started on the D3 at the first sign of soft teeth, years ago.

The other main thing to hold back osteoporosis is weight-bearing exercise.

I am absolutely certain that the old nursing/physiotherapy trope, “Use it or lose it,” is nearly always true.

Mind you, there are no guarantees.

Another trope: absolutist statements are always flawed.

Preferring to stack the oddds in my favor, I’ve stayed active and weightbearing despite considerable slumps, occasional backslides, and the occasional wish to throw myself off a bridge rather than mobilize.

So here I am with a broken foot, bone pain for the very first time since I got CRPS, and camping in our trailer as a diversion and a coping measure for being in between homes right now. (And that’s another looooong story.)

The second week post-fracture was interesting, as I figured out how to stay mobile. In this third week, I’ve learned that I should probably spend more time sitting down with my leg up.

Lay-people keep asking where my cast is. Casting slows healing. I have CRPS, which means my healing is already slowed considerably. Do I really need to slow it further? Hard to see an upside to that.

The point of casting is immobilization, and there are other, safer, saner ways to do that. Jamming a hard surface against a soft and variably swelling one doesn’t strike me as the best way to stabilize a small but essential bone. There’s nothing quite as rational as just leaving the darn thing COMPLETELY ALONE. Especially when even the touch of the sheet is unbearable … because, oh yeah, I’ve got CRPS.

The single biggest cause of nonhealing bones is overuse. Even I, type A-ish as I might sometimes be, can’t think of anything stupider and more wooly-headed than putting any weight or stress on a broken foot. Those are small bones with the most fundamental job in the whole skeleton. When they go wrong, it’s not good!

At first, I didn’t even put a sock on it — just a light lady’s scarf at times (a gift from a healer friend), gently wrapped around to keep the breeze off — or, as I thought of it, the burning blast from hell.
mismatched_sox
Recently, I graduated to a loose, bright red fleece sleeve with the end stapled shut (breeze…) Now that the swelling is down enough, I can wear the “walking” (no, that’s not a sensible suggestion) shoe…
Red fleece sleeve slid over foot and lower leg. Walking shoe on.
… to minimize the effects of the occasional little bumps and jostles the foot gets as I dart around on my stunning little knee-walker.
scooterfreesme
I can’t use the knee-walker in the trailer, too close to the car, on rough terrain, or when the bruising on my shin gets too bad. So the moves I developed in my first week are getting more refined.

Major problem… Despite an eating pattern averaging 1,450 kcal a day of steamed greens, lean protein, and highest-quality fats, I weigh 200 pounds (90 kg.) So,

  • every time I lever myself up from the floor on one foot .. that’s 200 pounds going through one knee bent double, on a frame designed for less than 150.
  • Every time I hop, even in my scoop-bottomed sneakers, that’s 200# — plus velocity — landing on that leg each time.
  • I do my best to control my velocity and distribute the load through the whole spring-structure of the leg, but … 200 pounds. I thought my Achilles tendon was going to pop off my heel yesterday.
  • Every time I brace myself with my hands on a rail or counter as I swing or scoot along, that’s 3 digits of poundage on my CRPS’d carpal tunnels.
  • And then there’s getting in or out of the trailer I’m living in, with its two and a half foot rise… makes me feel faint to think of it.

It’s kind of unreal that my body has held it together for so long. But hey, like I’ve said, a lot of us find that we are capable of far more than the science might think.

The t’ai chi is invaluable. It’s all about the curves. Everything, in the end, is embodied in the swooping lines of the taiji symbol.
Yin_yang-sm
I can get a lot more leverage than should be humanly possible out of a curving or looping wave of my hand — a Roll-sideways rather than Roll-back, for my fellow t’ai chi-kans.

I propel myself from the ground up onto my foot by sending energy down from my back in a spiral into the floor, and letting that “imaginary” spring push me up. Go Dragon!

I settle onto the toilet while keeping one foot aloft by using a really cool sort of 3-D scissor-swoop with my two arms — Part Wild Horse’s Mane, but with less tilting and more curve.

The pain is, well, beyond words, so let’s pass on. The level of dependency is, for me, even worse. The hardest part of all, though, was giving up chocolate. It interferes with calcium absorption. I did say about not slowing healing, right?
choco-giving-it-up
I’m grateful beyond words for the t’ai chi moves. They save me, in a very physical, literal sense.

While we may find, in impossible situations, that we are a little superhuman, it isn’t good that we have to do these things. It isn’t healthy. In fact, it’s all rather ghastly from the first-person standpoint, however much it seems to inspire outsiders. In short, it sucks. And we suck it up. Then move on.

Swoopingly, if we know how.
I think I’m halfway to Bagua Zhang by now.

But it’s all related.

I wish I were an animator. I have these ideas in mind of a cartoon character who wiggles where I do, and not only could I make the character bounce and thud and stagger and scoot like I do, but I could animate wa-wa-ing waves and oscillating ropes of pain in morphing colors for each move. It’s really rather elegant, as well as side-splittingly funny in a greusome way. At the same time, extremely informative. Extremely.

Hmmm.. I guess I’ll download and learn some suitable animation software. In between the fractures, fallouts, fall-throughs, snafus, and the dribbling detritus of a slightly ridiculous life.

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Oh look! I’ve adapted!

I used to be punctual, meaning, 3-10 minutes early. I used to be relentlessly diligent. I used to be cast-iron reliable. (I worked hard to acquire those skills, after drifting through my first couple of decades with my energy and attention set to “simmer.”)

These were so much a part of my identity that, after a memorable lunch with 12 engineers and one writer (me), they passed me the bill to calculate. I didn’t know whether to laugh or cry, but I scolded them and passed it back. CRPS had already set in and numbers tended to cartwheel in front of my eyes, but I didn’t tell them that.

My care providers know they have to call me to confirm the day before an appointment, because even with the calendar in my phone and on the wall, and now with a weekly dry-erase scheduler on the fridge, I need the added sensory input to make sure the other 3 are correct and, above all, to give my brain one more hook to the info.

Reliable, remember? I’ve still got a lot of identity tied up in being reliable, and it takes a LOT more work, but it’s important enough to me to do, and ask for a little practical assistance with.

Today, I looked at the clock when I woke up and thought, “Hour and a half to appointment time. OK.”

As I set up my tea, I thought, “I’ll let J sleep. He’d only have half an hour to get ready and I don’t want to spoil his morning.”

As I washed and dressed, I thought, “Excellent, time to read a little while I have my tea, fruit and morning pillage.” Can’t just call them pills. Definitely pillage. I hope to lay waste to CRPS as it tries to lay waste to me, so that could go either way.

En route to my appointment, I found a whopping case of vehicular atherosclerosis — a traffic jam, in a country stretch of highway. Very odd. The clock read 9:50, and I realized I was going to be late gor my appointment.

Diligently, I picked up my phone and made an illegal call to notify Dr. Resneck that I’d be late.

She said, in slightly worried tones, “But… your appointment isn’t until 11.”

Not missing a beat, I said, “Excellent! I’ll pull over and read for an hour. That’ll be nice!”

In response to the still-shocky silence, I added, “Well, an hour early is better than an hour late, isn’t it! See you soon!” And hung up.

I realized that my brain had simply done an ER-worthy triage — is anyone hurt? Anything made worse? No? Fine! — and moved straight on to a good Plan B. I’m reading Jodi Taylor, and St Mary’s is about to be incinerated and I’m dying to know what happens. And yes, I’ve read it before, though not for awhile.

If I were a clinician caring for me, I’d note this incident down and give a worried little sigh. It’s not good, just not very good.

But I have learned, in this brutal school of my life with this ratfink stinker of a disease, that I CAN’T WORRY ABOUT THESE THINGS. From the standpoint of the person doing this, I am really pleased with my handling of it.

Anyone hurt? Anything worse because of my mistake? No? Fine! Now let’s advance some other agenda I’ve got! Because as long as the first two questions come up negative, IT’S OKAY. I am not a failure, oddly enough. I’m just not. I get a free hour, and that’s pure bonus!

Off to read my book. Enjoy the rest of your day, and remember that blessings can come in heavy disguise.

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Living without hope – tasks and aftereffects

I lived without hope for years. Years. It was weird to look around one day and realize I had no hope, and that I hadn’t had any for awhile. I didn’t think I was going to see another Christmas… for at least 5 Christmases.
ChristmasTree_NOT
When the few friends who were willing to be honest asked me what I hoped for or what I had ambitions for, I had to tell them that I had no hope and I had no dreams of the future.

They really had trouble with that.

Some just did that weird, head-shaking, “I didn’t just hear that” thing and changed the subject. A few asked if I was suicidal. I had been, and I drifted in and out of degrees of thinking about how to make it painless and permanent if I did kill myself, but I was… surviving.

Actually, I was working really hard on surviving. Hope had been sucking me dry, making me see things that weren’t there, putting my energy into some future I could only imagine, but couldn’t see a way to reach.

If I hadn’t been willing to drop everything, including hope, in order to just focus on the business of living with this horrific reality, I think I wouldn’t have survived. I had no extra energy, and hope was too demanding.

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

When I came out of that time, very very slowly, it dawned on me that I had been fighting for so long for my own life that, for the first time in my entire conscious existence, I felt no need to apologize for the space I took up, the effort and attention I required from the world, or, in fact, for anything.

As I told my Mom at the time, “I’ve fought for others’ lives pretty often, and when you’re coding someone, they’re your whole world for the time that you’re coding them.
CPR
“If you fight for someone’s life over any length of time, you come to care about them as well as for them, even if you have nothing else in common. Well, I’ve spent years fighting for my own life, and it’s impossible to fight that long for someone without really coming to care about them. I really love myself, in a solid way, with no caveats, and nobody and nothing can shake that.”

So, I don’t associate hopelessness with futurelessness or lifelessness, as most people seem to do. I have every faith in our ability to face life without hope, because sometimes it’s just dead weight. Sometimes, it distracts us from what’s real.

I have faith in us, hope or no hope. I have absolute faith in our ability to move through the stages of this unbelievable circus we call life, and make them work for OURSELVES in the end.

Faith isn’t the same as hope, because it relies on something that’s present now, not on something that might be possible in the future. I have faith in our doughtiness, an old-fashioned word combining the meanings of nerve, grit, and determination. Boy, do CRPSers have all of that!

In the end, hope is a luxury we can’t always afford. Hoping and dreaming — putting our energy into things that don’t exist — can be a real sink. That is, maintaining hope and dreams can, themselves, take more energy than we can afford.

It sounds counterintuitive to someone who’s never been there, because most people think of hopes and dreams as what pulls us forward.

If hopes or dreams pull you forward, that’s good; if they don’t, reconsider, and maybe refocus.

Refocusing on the sheer present business of finding a way to survive with things as they are right now is not wasted time, it’s not suicidality, and it’s not even an act of despair. It’s profoundly rational, profoundly functional, and even when it’s profoundly difficult, it’s still profoundly worthwhile.

From my own experience, I have to say it’s a strange state of mind to live in, but it’s surprisingly worry-free. False worries fall away as fast as false comforts do. Once I accepted the state of life with no hope, there was no room for b.s., either in my world or in my relationships.

Life simplified itself; all I had to do was keep up — or rather, pare down. That was weird too, because I used to find stuff comforting.

In that utterly simple state, though, it wasn’t comforting. It was just stuff.

Having emotional energy invested in something so … stufflike … was absurd. Talk about false comfort!

So, before long, all I had was what I needed; nothing more, and not much less.
teapot-eaglehaslanded
In time, everything changes, even the amount of energy we can spare. I can tell you exactly when I rediscovered the luxury of hope, because I blogged about it here. It was nothing more than the first whisper, because that was all I could support, but it was unmistakeable.

Since then, I’ve also rediscovered flippancy, ambition, and even toilet humor. (My sense of irony never left, which makes me think it’s essential. H’mm…)

But a few things still remain, deep currents in the otherwise twinkly surface of my character:

  • stuff is good only if it’s useful and there’s room for it;
  • nobody, but nobody, decides when I die but me; and
  • I love myself. I may be grubby, nerdy, daffy, clever, ill-yet-unconquered — but I love myself absolutely, without vanity, and without caveats.

If it took living without hope, then I’m better for having done it.

Aphorism for the day: Don’t be afraid of what life brings you. You never know what’s on the other side. It’s just a matter of getting there.

me-fingers-peace

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Treating CRPS enough to have a life

Someone asked a question on social media that led to my doing a brain-dump on the basic format of current treatment for CRPS. This will take on a more formal form, but right now, for quick reference, here it is.

Like many others, this person has narcotics as a primary form of pain control. Increasing the dose increases function, but past a certain point, is that a good idea?

And, more importantly, the biggest question was, what does it really take to be able to have a life again?

 

Common-sense note on narcotics

Firstly, it is GREAT to have something that works. I know plenty about narcotics from a physiological and neurological and even a gastrointestinal standpoint, so I know the arguments for and against — but, when all is said and done, it’s great to have the option and it’s great to have something that works for you.

Keep what works! Unless and until you really can replace it with something better. (Clinicians, in their overbearing way, can be pretty cold about this.)

In the end, if you need to increase the dose, then increase the dose, but given how our bodies adapt and the disease shifts over time, it might be good to keep higher narcotic doses in your back pocket for breakthrough pain and flares, and see about the other meds that treat nerve pain specifically, support (in some cases) your neurology so you can function better and be more stable, and leave some slack in your body’s narcotics “budget” for other times.

Doctors should be able to support the idea that you should be able to have a life, and happy to help you figure it out. Good pain specialists have this as a specific goal which they try to help us reach as much as possible for as long as possible.

Read tamingthebeast.ca or elsewhere on this blog for loads of tips on nutrition, homeopathics, herbs, and other at-home strategies. This is just about the stuff your doc can do for you.

I mentally break these into 6 categories, 3 of oral meds and 3 of other, more interventional stuff:

MEDS

  • Neurochemical support: Mostly antidepressant-category meds, from tricyclics to SSRIs to SNRIs. SNRIs have the significant bonus of potentially stabilizing a faulty ANS.
  • Transmission shifters: Mostly anti-seizure meds, Lyrica and Neurontin. Ketamine certainly shifts nerve signal transmission, and the protocols for giving it are getting better and more specific. Technically it’s an NMDA receptor antagonist, but it affects opiate and MAO receptors too.
  • Calcium “wranglers”: Calcium channel blockers, bisphosphonates.

Basic principles of medication

  • Remember, all meds have side effects. There is no free ride; sorry!
  • Most of our meds can affect judgment, memory, and perception. Ask a relative, housemate or friend to check your brainpower and personality, to see if there are effects you’re not aware of.
  • Avoid polypharmacy, or too many meds, because it’s a great way to create a neurochemical mess. I stop at 3 different ongoing meds, since I can’t tell what’s causing problems if I take more. I also have 3 as-needed meds, which I rarely use, unless the side-effects of the pain/nausea/wheezing are worse than the side-effects of the meds.
  • Last but not least, med is spelled M.E.D. which means Minimum Effective Dose. Both adjectives are equally important. It must be effective, or why are you taking it? It must be the smallest dose that really works well, because otherwise you’re dealing with the same issues mentioned in the previous points, and they get a lot worse with overmedication.

Keep in communication with your doctors about your meds. If they’re savvy, they’ll work with you to optimize your medication profile for best functioning with fewest problems.

INTERVENTIONS

  • Injections and implants: spinal root blocks, prolotherapy, spinal cord stimulators, botox injections, spinal baclofen infusions, implanted drug dispensers.
  • Zaps and rads: TENS (electric counter-stim blocks the nerve pain), TCM (electro-magnetically stimulates and remaps certain parts of our brain that support the disease), Calmare (a more complex electrical technology that retrains the pain signal so it eventually doesn’t restart.)
  • Retraining, rebraining: Multi-Disciplinary Functional Restoration/Rehab is the gold standard for treatment. Most of these programs, but not all, require participants to be narcotic-free. The puritanism I can do without, frankly, but the whole-person approach, and the enormous mental toolkit you come away with, is absolutely life-changing.PT, OT, counseling, and learning about relevant subjects from pain mechanisms to nutritional effects on pain and function to communicating effectively with those around you so everyone can do more with less effort, is simply tremendous. It used to be a shoo-in for US citizens because it got people back to work so effectively, but in the industry overall it’s more profitable to keep us sick, so now it’s harder (but still possible) to get that paid for.You have to have determination and some mental flexibility to get admitted into a program, because it’s hard work, but if you find a program that agrees with you, then it could be the single biggest change in your life.

Every time something goes under your skin, your body has a shocky/inflammatory response. It may not be noticeable, but if it is, be ready to manage it.

If you get an invasive procedure, like implants or injections, then use one of the vitamin C protocols to help ward off flares and exacerbations: 500 mg 2 to 3 times daily, for 1 to 2 weeks before the procedure and 2 to 3 months afterwards.

Now what?

Talk over these different options with your doctor, if you haven’t already — increasing your current meds, using supplemental med support, trying technologies and interventions, risks and benefits.

Also, sadly, it’s important to discuss the realities of funding and insurance coverage, so that you can develop contingency plans to follow in case your hoped-for option doesn’t get approved right away.

Always leave yourself a way forward — that’s a good strategy 🙂

There is a lot that can be done, and most of us cobble together a few different things that work a bit so that, together, they add up to enough to let us … have a life 🙂

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Documentation — Long time? Timeline!

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.

cartoon of surgeon hiding a saw behind his back.
They aren’t always paying attention.

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:

First 2 pages of first timeline
Click to link to the 3-page PDF.

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.”
    (That’s fair.)
  • “I’d also like to be able to find your work status more easily. This is a worker’s compensation case, after all.”
    (Good point.)

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.

timeline-beta
Click for the full PDF.

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:

timeline-gamma
Click for a closer look at the PDF.

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:
timeline-condensed
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.”

Easy enough.

timeline-colors
Click for pretty colors. subtly used, in the PDF.

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.

TRIAGE INFORMATION:
– 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.

timeline-coverpage
Click to see how I organized this info. PDF format.

After all this time, I can put my whole history with this disease into one single document that totals 10 pages.

  1. The first sheet has my contact, billing, and demographic info.
  2. 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.
  3. 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:
timeline-current
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!

clip-art-dancing-755667

Timeline Tips:

  • 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.

Use it. Share it. Spread it around.

Bien approveche — may it do you good 🙂

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Documentation – a picture’s worth a thousand words

Doctors believe what they see.The training they get and the laws they must follow all reinforce that. If they see it themselves, then it’s real; if they only hear about it, it’s hearsay, which is much less believable.

This is why it’s hard for us, as chronic pain patients with all sorts of hidden issues, not to come off as shrill and demanding: we expect them to believe what we say, and they find that outstandingly hard. It goes against everything they really know.

Therefore, show them. Put it in pictures, put it in print, and watch their expressions change before your very eyes.

sketch of excessively happy doctor running with a hypodermic needle
They should always move with such alacrity and glee 🙂

This is the first in a series of posts about the documentation that I’ve used over the years. I’m starting with the time I got tired of pointing to my arm and saying, “Well, it was like this (gestures) last week and it’s like this (different gestures) most of the time this week. It’s only blue because of the cold.” And then he couldn’t remember what I said it looked like a week ago.

No help at all.

So I went home, put my hand and forearm on a piece of paper, and drew an outline around it. I came up with a set of symbols to show what I needed to track, and marked up the outline accordingly.

As my situation changed from week to week and month to month, I grabbed paper, put my arm on it, drew another outline (I really should have made blank copies), and filled it in with the current state of my arm.

Lo and behold, I hardly had to say a thing. One doctor looked over my stack of images and said, “Wow. They really tell the whole story, don’t they? I hardly need to look at the medical record.” He did anyway, but was pretty quick.

My office visits were a lot more productive after I started keeping those pictures. I called them “snapshots” and collected quite a few of them before the case became too complex and moved into different territory. (More on that later.)

Here’s the key I came up with to explain the symbols I used for the symptoms I had at the time:

6 different scribbles to show 6 different signs and symptoms
key to snapshot scribbles

As you can see, I just scribbled patterns which I found easy to remember. Nothing fancy.

Each sign is distinct from the others, except for the two strengths of “bruising” (I now know that that was CRPS discoloration), which are the same symbol at different densities. Makes sense, right?

Here are the first 3 images, and what made the difference between them:

Baseline, after working as best I could with the injuries:

sketch of hand that shows extensive pain and bruising.
My first stab at this. What can I say? I was a writer and musician, so I took my hands very seriously.

After about 4 weeks off duty, resting and recuperating:

sketch of hand showing very little pain or discoloration.
It took 2 weeks just to relax, but I succeeded.

After 1 single week back at work on restricted duty:

sketch of hand showing pain and discoloration going further up the forearm than ever before
Yeah. Sucks, huh?

That doctor was right. They really do tell the whole story.

See how easy that was? 🙂 All it took was a pen, paper, and a few notes.

Here are some tips:

  • Put the date and your name on every single one, always.
  • Be consistent about how you label things. They don’t need to learn different labeling systems, they need to learn your case’s course over time.
  • This is a good place to note your pain ratings.I annotated my snapshots with current pain range (at rest and on exertion), bullet points and narrative notes, but it took awhile to learn to keep those annotations very short and to the point.

I scanned all the snapshots into my hard drive, so I can recreate these at any time. I find it very useful when breaking in a new team, because the story told by my first few years of pictures really does tell the key parts of those first few years. They “hardly have to look at the medical record” to understand — and remember! — what happened.

Plus, you clearly don’t have to be an artist to make these pictures accurate and useful 🙂 If tracing around your own limb is too painful or awkward, there’s no reason not to ask someone else to do theirs. Alternatively, you could take a photograph and use image-editing software (available with your camera, or for free or cheap online) to mark the image with your signs and symptoms.

There are lots of ways to get these images going, with any set of tools. And boy, are they ever worth it.

As a point of interest, the freeware I use for editing images is called Gimp. Perfect tool-name for someone like me, eh?

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On sleeping despite all this

This is a brain-dump from a recent social-media post. Since the same question was asked 3 times in one day on my groups, I figured I might as well put it all right here and link …

Stylized image of woman asleep with enormous red and black dress billowing around and supporting her. White snow falls from a deep blue sky

I used to be a night shift nurse and a home care nurse. Boy, do I have advice about helping your body sleep. Pick and choose what to start with and try as many of these ideas as you want, until it starts coming together and working well for you:

* Positioning. (Old nurses and physical therapists can be really good at this — we don’t get to write prescriptions, so we have to go with what really works and has no side effects. Oops, did I say that out loud?) Invest in enough pillows that you can, as needed, elevate appropriate limbs; support your neck; cradle your head; support your back and hips; pad your knees; get your upper body at a good enough angle so your blood doesn’t pool too much in your head; if you’re a tummy-sleeper, this can be really interesting because you need to slant your whole body from the knees up. Positioning, and the pillows/towels/blankets that requires, is generally the first thing to address.

* Have a regular bedtime routine. This gives your body and brain a consistent, reliable set of cues that it’s getting towards That Time. Our too-plastic brains need to be constantly retrained. Mine starts about an hour and a half before bedtime; I would do well to move it up to 2 hours,, as my descent into sleep is iffy.

* Turn off electronics (TV, phone, interwebby stuff) 1.5-3 hours before bed. There are several reasons for this: multisensory stimulation, EM activation, input from the outside world beyond your control, input you need to react to or decide not to react to (all of which suck up neurotransmitters.) All of this cranks up the primitive brain. Mine goes off around 8-8:30 pm.

* Listen to soothing, calming music for an hour or two before bed. I love classical chamber music, especially Mozart, Bach, Schubert, Rachmaninov, Pachelbel – elegant but not too emotional. Soft jazz or soft rock are also good for those who don’t care for classical. The brain patterns readily to music, so this is like free help.

* Speaking as a night shift nurse, I have to say that chamomile tea is the best, bar none, the BEST way to get the squirrels off the wheel. It doesn’t make you feel as “different” as sleeping pills do, so many people under-rate it dramatically. I noticed that most of my patients couldn’t even get halfway down the mug before they passed out completely, so I know it works objectively, even if it isn’t dramatic subjectively.

* Tulsi, or holy basil (Latin name occinum sanctum), is an herb from India that actually lowers cortisol. (It was used to teach novice monks what a calm mind feels like, so they could get it together with their meditation.) If you get that pop-awake in the wee hours, that’s probably cortisol, and tulsi at bedtime can do a lot of good.

* Ashwaganda has similar abilities, but I haven’t used it much so I haven’t studied it. See what you think. Some teas have both.

* All major herbal traditions have herbs that help. Tulsi and chamomile work best for me, but valerian works for others. I find hops stimulating, and wouldn’t go near poppy or belladonna because of my CNS sensitivities. Those with migraines, central nervous system and some vascular issues need to check twice before using some hypnotic herbs… This is well worth discussing with an herbalist, because they can make all the difference if you get the right recipe.

* Melatonin can help, too. There are two ways to use it: at a “metabolic dose”, which means one tablet can last 8 doses, and that’s just to remind your body to do its calming down; or at a pharmaceutic dose, in which case you can experiment with the different dosings available (usually from 1 to 4 mg, I believe.) See which works for you.

* You can also use 5-HTP before bedtime, which is a good serotonin precursor. If you’re on antidepressants, start at low dose and be mindful of its effects; it can potentiate your antidepressants, making them more effective at a lower dose. Being overdosed on serotonin can be counterproductive, as it makes it very hard to wake up completely!

* If nightmares are making it hard to nod off (often the case for me; I can tell I’ve been having nightmares if I can’t make myself calm down for sleep) then lavender oil dabbed onto either side of your pillow can be a real help. Or a lavender pillow, but remember to refresh it as needed. It’s very good for keeping nightmares at bay.

* Get what activity you can, pretty much every day, and stop exercising either before 5 or before 3, depending on your system. Activity helps regulate the autonomic nervous system, especially if you respect the body’s natural diurnal cycle and take enough time to let the neurochemistry slow down at the end of the day.

* Be mindful of your caffeine intake. Caffeine in the morning can be a huge help to keeping the diurnal cycle regulated, but it’s important to lay off it in the later afternoon and evening, because the disruptive effect always lasts longer than the real waking-up effect.

* Be gentle with yourself. Take the time to learn what works best for you. Be considerate of your household regarding lights and noise, so there’s less fallout in the morning. When you’re stuck awake, remember that rest is still restful, even when it isn’t sleep, and do your best with what you can get. If all else fails, make the most of the time, and try again tomorrow night.

Prolly enough to go on with for now… any other thoughts, folks? 🙂

On a lighter note…

toon_dlewis_bedtimeroutine

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There’s always an afterwards

When I was a nurse, I could see when death was creeping up on someone. I saw gray fluttering around the person’s edges, especially around the head and upper body. As they recovered, the fluttering grew narrower and disappeared; as they lost ground, it grew wider, sometimes growing too wide to see.

Rear view of sturdy stone angel inside a lovel stone church

When that happened, I made sure I could find the code cart, because we were going to need it.

I worked and fought like hell to shrink that fluttering, to get each person closer to life.

Not every life can be saved. There’s a dislocating moment when, after working with several others to try to revive someone, it sinks in upon all of you – neaerly simultaneously – that it’s a lost cause, and then the doctor calls the code.

Everyone steps back for a moment, same expression on their faces: eyebrows up, eyes on the erstwhile patient, mouth slightly open, every brain running through the scenario and looking for something left undone (never has been, on my teams)… pausing in the shock of rebooting.

When I was coding someone, that person was the most important thing in my world, and all of my training and experience and physical capacity was tightly woven into my determination to get them back. When I had to stop coding them, all of that intense focus, activity, and energy had to come to a screeching halt, be re-assimilated back into my reserve, and clear the way for the next set of tasks. Not a trivial job.

Multiply  that by the number of professionals in the room, and you see why there’s always a breathless pause, even in the most practiced ER.

Then we get back to work, but it’s the work of cleaning up, restocking supplies and meds, prepping the body for the morgue/organ harvesting, and clearing the way for the next incident — a gunshot wound, a bloody nose, a beaten child, a drama queen or king; could be anything.

This explains a lot about ER staff: whatever happens, however we feel about it, we have to clear it away, clean up, restock, and be ready for the most trivial or the most harrowing issues to come in that door next — with little or no warning. Then deal with that, sometimes by brutal means (which you’d understand if you ever saw a chest tube placed or helped set bones for someone who’s been beaten.) Then go home, get food down and go to sleep, and be ready to  come in the next day and do it all over again. Day after day after week after year.

Imagine what that takes.

No wonder they often seem a bit detached, a bit harsh, a bit clueless about the human impact of what they do. They have to come back to that every working day, and try to stay above the madness.

Bosch_painting_of_Hell_(582x800)

The very day I realized I’d forgotten the human impact, was the day I knew I had to change careers. No wonder my immune system was failing. The effort to protect myself was killing me.

My dad’s death was unexpected, and happened overseas. It happened shortly after I knew I’d have to change careers, and shortly before I gave notice and surrendered my RN licensure.

I don’t think I’ll talk about it much, except to pass on the best advice I ever got about survival:

Take every opportunity to be happy, because it makes you stronger for the other times.

Less than a year later, one of my dearest friends died suddenly, back East… After that, I lost someone I loved every month or two, for just over a year… and somewhere in the middle of that, my relationship fell apart.

Hellish, tragic and harrowing as that period of time was, it turned out to be training wheels for being disabled with CRPS and all that comes with that.

It’s no wonder I have some of the symptoms of someone in an abusive relationship. I am; it’s called Life.

me-fingers-2up
And that’s what I say about it.

I’ve seen the grey fluttering around myself more often than I’d care to say. I’ve wrestled with the desperate temptation to end this brutal, chaotic nonsense for myself.

Angels_lossy_notsonice

My own intransigence saves me; no stupid disease gets to win. The very thought is intolerable. Not gonna let it happen.

US Navy: Marines of the embarked 15th Marine Expeditionary Unit practice hand-to-hand combat
I identify with both. They’re working their butts off and there’s no telling who’ll win… but neither one will cry uncle.

I’ve had to tell myself, sometimes every few seconds, “Keep breathing. This will pass. There is an afterwards. Just stay alive long enough to see it. There is an afterwards. Let’s find out what it’ll be like. Keep breathing. This will pass.”

Verbatim.

And, eventually, times like this morning come, which thaw those unspeakable memories on the warm stove of peace…

Gentle air from a misty morning caresses my mouth. Happy morning voices trickle in from the neighbors. My tea tastes just right. The birds are screaming their fool heads off in the greenery. My feline ray  of sunshine can’t stop moving for the sheer glee of being alive.

Ari-squirming

It’s simple, but it’s perfect.

I find myself glancing back at the shadows behind me, giving them a nod.

I was right. There is always an afterwards.

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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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