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.
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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.
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“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.
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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.

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Preparing for winter in “Settler summer”

I’m too conscientious a historian to call it Indian summer, when the normally pleasant California shoulder season turns murderously hot.

I’m cleaning up, getting rid of clothes that were old a year ago and replacing them, and canning, dehydrating and even preserving food. I feel driven to, although it’s a lot of work and not necessarily CRPS-friendly tasks.

J cannot fathom why I’d be cooking in this heat, let alone making heavy, hearty food like bacon mash.

He’s cutting firewood instead.

Yeah, I know. We’re both kinda special.
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I have 4 blog posts almost ready to go up, but I keep making the mistake of starting my online time at social media. Within minutes, my attention is shot. I can’t finish a blog. I can barely finish a sentence.
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This is the first vaguely functional day I’ve had after a spectacularly ghastly mast-cell-mediated flare.

Silly me, I ran out of my zyrtec (which I didn’t take very seriously; it’s not important like an SNRI, right? HAH!) and spent one day incoherent and two days merely swollen, crabby and able to cope only by losing myself in mindless tasks or Terry Pratchett books.

Took a day to figure out what was wrong. Partly, that was because I didn’t realize how much the zyrtec was doing for me, and then, of course, there was the headache that made me want to hack off the offending part, which made it quite hard to reason things through.
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J is still avoiding me, hiding in the trailer with the tv when he’s not actively butchering logs. It’s possible this chicane isn’t over yet; his behavior is usually a reasonable guide to how unbearable I am.

I only took one zyrtec today, as my stomach would not even think about more. In a couple of days I may be back up to my usual 2. It will be nice to have normal fingers; reasonably functional digestion; less inflammatory pain playing xylophone on my spine, with rimshots off the other joints; and maybe a calm and considerate personality again.

Anything is possible.
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Isy’s anti-inflammatory mashed potatoes
Obviously not for those with belladonna sensitivity.

  • 5 pounds organic red potatoes, cleaned and coarsely chopped
  • Turkey broth
  • 1 organic white onion, diced and lightly browned
  • 4 oz grassfed butter, like Kerrygold or Organic Valley Grassfed, in chunks
  • 10-12 oz grassfed aged cheddar, like Oscar Wilde 2 yr, Cabot Extra-Sharp, or Kerrygold aged cheddar, sliced or chunked
  • Optional: nitrate-free naturally-raised bacon, like Niman Ranch, cooked until very crisp, then drained and crumbled fine

Steam the potatoes in the turkey broth.

You might need to assemble the rest by halves, depending on the volume of your mixing bowl or blender.

Dump the rest of the ingredients into a mixing bowl or, if you have a really good blender, use that instead. Put the potatoes and broth on top, so the butter and cheese start melting under them and make it blend better.

Beat or blend until it’s the consistency you like.

Enjoy it nice and warm on an achy day.

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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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Learning to stand: t’ai chi, qi gong, and unscrambling the CNS

About 15 years ago, I studied shaolin kung fu with Ted Mancuso at the Academy of Martial Arts in Santa Cruz. I was outrageously lucky to wind up there. I had too much spiritual feeling to tolerate the gym-type martial arts classes normally found in the US, but not nearly enough discipline to make the most of my time at the Academy.

However, I did learn a few things, including how to block a punch in such a way that my opponent’s spinal reflexes were disabled for my return punch. That was cool.
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Being short, blonde, female, well-traveled, and — above all — a sometime Emergency nurse, all my illusions about bad things only happening to bad people were long since destroyed. It’s a great big world out there, and anything can happen to anybody.

So there I was, in my self-satisfied early 30’s, at a top-flight martial arts training school. The fact that the teacher (or “sifu”) had started in qi gong somehow totally eluded me. I was infatuated with the grandmother of martial arts, shaolin kung fu, and really had eyes for nothing else.

Smiling sparrers from Shaolinsuomi at Wikimedia.
Smiling sparrers from Shaolinsuomi at Wikimedia.

I briefly flirted with t’ai chi, but decided it would be too hard on my knees… Knees are important, but shoddily made. I had cruddy cartilage (what was left of it) under my kneecaps. I thought that was painful (how cute!) and was afraid of making it worse before my time (another joke, in retrospect.) I got physical therapy for that problem, and learned that my legs had been aligning poorly at least since I was 11.

Retraining my legs to activate different muscles, ones I could hardly feel (and no wonder), was daunting at first.

I remarked to Sifu Ted, in tones of reflective melancholy overlaying a certain smugness, “I’m re-learning how to walk.”

That was supposed to be the opening line of a short discourse on rebuilding something so fundamental, literally repatterning one of the most reflexive early lessons in life, going right back to the beginning and restructuring an utterly basic activity … yeah. Cute.
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But, before I could get started, he said, in a tone of unrehearsed frankness overlaying a certain frustration, “I’m always relearning how to walk.”

My verbal hot-air balloon deflated on a laugh, before it ever left the ground.

He said, “It’s true.”

I nodded, and went away to think that over for a decade or so.

I thought of Ted when I realized that combining energy discipline and body work was the best rubric for managing my CRPS. I’m back at his school now, studying — you guessed it — qi gong and t’ai chi.

Um… No, it’s not too hard on my knees.

T’ai chi is second to nothing I’ve tried for correcting posture, the way Ted’s Academy teaches it. While each body is unique, there are certain things that have to happen in order for the movement to work. To do good t’ai chi is to line your body up properly. My low back is slowly opening and lengthening again, and my feet are remembering how to find the ground.

Qi gong is another dimension beyond that. I’m sweating over re-learning how to stand. When I find the words, which may take awhile, I’ll write about it more. To start with, I’ll just say that I had no idea how much I get in my own way — and I’m not that bad, for a Westerner. I started qi gong 20 years ago, but now I’m starting all over again.

I thought it was trippy to go back to when I was 11, and un-learn from there. Now I’m realizing I have to go back to when I was 1.
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But I’m looking forward to knowing how to walk.

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Humbling invitation

I’ve been invited to ride in the funeral cortége of the man I helped code last week. It’s a semi-public occasion, as he was a semi-public figure (which is why I’ve been cagey about details), so “yes” is not as simple as it sounds.

I seek public exposure the way other people seek whooping cough — every now and then, it hits, but fortunately, it’s rare, and generally causes no lasting damage.

I was silly enough to mention that I have a sub-par central nervous system to the extremely kindly person arranging the event — who was also my CPR partner at about this time last week. He nearly withdrew the offer on the spot, possibly raw over the possibility of another medical event.

It’s a bit strange to have someone else worrying more about my body’s reactions than I do. Kind of refreshing… but definitely strange. This disability has been so invisible for so long — a fact assisted by the sturdy stoicism so many of us live by — that I simply have no idea how to handle someone else’s concern.

To mitigate any need for worry on anyone’s part, I’m preparing for CNS stress on Monday. Here’s how…

I have found, absolutely consistently, that the key to preparing for extra events is all about berries and vegetables. All the vitamins in the world — which I think I’ve tried — can’t do quite as much good as half a bucketful of organic greens and half a basket of good berries per day. I just had a big farmer’s-market-fresh salad; I’ll have kale for dinner, and there’s steamed summer squash awaiting the next moment when I can handle a few bites. Wild blackberries are set for breakfast.

I’ll boost my multivitamins and antioxidants only slightly, since I already take about as much as my body can absorb. I’ll keep lemon balm (for pain flares and dysautonomia) and yerba santa (for nausea and nerviness) in my pockets.

I’ll do extra brain-training, which I’ll talk more about one day, but it’s basically about learning how to calm the central nervous system by sheer will. And t’ai chi. Lots of t’ai chi. Mental practice, if not much physical. I see a couple of Epsom baths in my future, stocking my system up on magnesium and sulphur to buffer this body a bit.

Funerals are for the living, though we think so hard about what the deceased would appreciate. I’m not sure why that works, but it does.

The peacocks left us a glorious side-feather.

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It might come with me. It might not come back. I’ll see what it feels like the deceased would appreciate.

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Define “invasive”

I was a Registered Nurse for 8 years — in one of the first HIV specialist units in the country, in the only public ER of one of the murder capitals of the US, in cardiac telemetry, in home care. It was a good, demanding, well-rounded career, if a bit short for my taste.

I’ve often wanted to re-educate my nursing self in light of my experience as a patient.
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Here’s one of the most outstanding, outrageous lies we tell ourselves as clinicians: medications are not invasive.

That statement bears no resemblance to the reality of those being treated. It relates entirely and exclusively to the clinician’s experience. The clinician’s unstated assumption is, “I’m not hanging onto the thing that’s getting under your skin; therefore, what I’m doing is not invasive.”

News flash: Treatment is not about the clinician. It’s about the person being treated.
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Medications get taken into the whole body, not just the ill part. Injections go right past the first barrier against infection and assault, the skin. Oral medications go through the mouth, descend into the stomach, and there meet the second barrier to infection and assault, the GI system… which they either aren’t bothered by, or can resist.

They’re then taken up by the blood, which goes everywhere.
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They are all processed in the liver (it’s called “phosphorylation” and, privately, I suspect that’s why we tend to have trouble with phosphorus issues when we’re on lots of meds.) This is why too many meds for too long can lead, or contribute, to liver failure.

What goes through the liver goes through the spleen and kidneys, because that’s how it works. This is why some drugs can cause kidney damage.

What hangs out in the blood can, all too often, hang out in the brain. This is why some medications for organ issues or even a simple infection can cause deafness.

Blood circulation exchanges fluids with lymphatic circulation. Blood and lymph communicate with the central nervous system via the blood/brain barrier and the sheath around the spinal cord. The blood/brain barrier provides partial, rather temperamental protection, but it can be suborned by anything that makes the tissues fragile — fever, illness, injury… and some kinds of medication.

What is in the blood goes everywhere.
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How is that not invasive?

I’m watching my partner fading with weakness after only a week on a couple of cardiac meds. I’m certain his heart has not gotten worse in a measly 7 days. The only thing that has changed is that he is seeing doctors and taking medication — for nearly the first time in his life. (“No side effects,” my left foot.)

How much of that weariness is stress, how much of it is the past couple of years catching up with him, how much of it is heart disease (actually, that part is pretty clear) and how much of it is medications? Each of these things has some part in it, there’s no question, but drawing the line between them is more than I can really do. I know the meds are part of it, but how much?

Medications are intimately, unavoidably invasive. There is no completely safe dose, and there is nothing that helps you for free.

Everything — meds, interventions, surgeries — EVERYTHING has side effects. There is no single thing you can do to your body, or allow others to do, that doesn’t affect every part of you in some way.

My years as a CRPSer, where the consequences of every change are so exaggerated, makes this pitilessly clear to me.

Given that there is no free ride, we have to look at the tradeoffs. Knowing that there are issues with absolutely everything, however “natural” or “close to our bodies’ own chemicals” it may be, we have to balance that against whatever benefits it may have.

Herbs are included, by the way. My increased sun sensitivity (which my disease causes a bit of anyway) and impairment of birth control (which I don’t take — what, mess with these chaotic hormones?) are side effects I shoulder with my eyes open, so that I can have the neurotransmitter support of the St. John’s wort herb I take twice a day.
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I review all my medications twice a year at least, to see how I can tread the narrow path between optimum benefit and minimal confusion. Doing this from a chronically slightly confused state is, naturally, a whole different kind of fun. Working out which part of the daffiness is disease and which part is meds and supplements is really my most important task.

My partner has to choose between cautiously building back up some heart strength and circulation — and meanwhile have a life that is a small fraction of what he used to have for energy and activity, unless and until the medications and rehab really work; or risking the total loss of death by having a surgery which would leave him in pain and in rehab for awhile — but, afterwards, bring him back a lot closer to his normal, with many good years ahead.

Wait and see and work and hope, or take a leap and — if you live — work and probably win?

In a way, I envy him. If there were a procedure to do a bypass graft to eliminate CRPS, I’d be in the OR already. I’ve had enough of a twilit life, of exhaustion and fog. I want to get back into the full sun.

I miss running, too.

But it’s his heart, not mine. I do my best to explain things, listen carefully so as not to run over his real thoughts, and grab hold of my anxiety with both hands, so that any decision made is truly his. As it has to be.

Until then, he has to peer through the fog and work through the weariness of these “non-invasive” medications, to make his choices and his appointments. I’m just there to help — and to make sure he’s taken seriously, which is a real drawback to looking as fit as he does.
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But that issue is another post…

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Threads on the loom: bereavement and CRPS

When I was 4, we moved to New Jersey from Turkey, as my parents thought their kids should get a feel for their native land. Our new backfence neighbors were a large and lovely family from Virginia, so I learned to spell “dog” both with and without a “w” by the time I was six.

The youngest daughter got me going on poetry. We read A. A. Milne and Louis Untermeyer in between dips in the kiddie pool. Her Mom, Mrs P, gave me drawing lessons when I was about 9.

My Mom was very maternal in her genuine enthusiasm for all my art. (I found that frustrating, because I knew it could be better and had no idea how to make it so.)

Mrs P did not have that problem with me… Her key edicts make reasonable rules for living: For one thing, I should not draw the whole scene until I was capable enough (don’t let things overwhelm you.) I had to pick the parts that were most important or that caught my eye, keep it simple, and do it right – or else there’d be erasing, and, if you erase too much, the surface gets harder to work on. (Isn’t that the truth.)

She was also good for the reality check. She quickly eliminated my grade-school habit of drawing red apples and brown trees, but made me look at a real apple and draw that; hold my colored pencils up to the tree and see which colors really matched.

See what’s really there, not what I expect or what I’ve been told things should look like.

The biggest note of approval I ever got from her was, “not bad.” By the time I was 6 weeks in, I was able to collect a “not bad” or two almost every lesson, which pleased me no end.

CRPS took away the link between brain and hand that let me make art, but one thing really stuck with me …

Why settle for good or even great, when you could aim for making it absolutely right?

“Good” and “great” are about others’ opinions, but “absolutely right” is something ageless that stands on its own.

Later that year, our parents sat us down to have a family meeting. Dad had been offered a job in Cairo, Egypt. He wanted to know what we thought about moving to Egypt in a few months. Mom and Dad discussed pros (long list) and cons (short list.) Older Brother asked about schooling (very good) and the social scene (unknown, but probably interesting.) Younger Brother piped up with characteristic curiosity and adaptability.

It seemed like a done deal, but I was wrong. Dad looked at me and said, “What do you think, Isy?” I must have looked surprised. He said, “You have a good sense of people. I don’t want to finalize this decision until I hear what you think it’ll do to us, either way.”

Should I be nice? My first instinct was to be nice, to stick up for the shabby underdog (in this case, New Jersey), to do what I thought was expected of me … but it stuck in my craw. Perhaps Mrs P’s lessons on seeing things as they really are had sunk in.
I said, quite honestly, that New Jersey was not being good for any of us (except maybe Younger Brother) and that Egypt would be new and interesting. We all liked new and interesting. So, as far as I could see, it was hard to see a downside to going, and hard to see an upside to staying.

So we went. And I got an early lesson in the value of calling it like I see it.

Our vacations were dreamlike, because we were close to some of the most striking sights in the world:

  • El Alamein and the remains of fallen soldiers from 5 continents;
  • The Red Sea, when it was still the most outstandingly varied and brilliant source of sea life on Earth (it’s still good in spots, as that video shows);
  • The southwest coast of Turkey when Bodrum (formerly known as Halicarnassus) was still a fishing town and their medieval castle the tallest building in it;
  • And, of course, the remains of roughly 8,000 years of Egyptian history from before the Old Kingdom, down through all those Rameses, Greek absorption, Roman annexation, Medieval flowering and Mameluk co-optation, the French and British tradeoffs, modernization as the royal family fell and the secular dictatorship accepted Nazi help to fend off the British return, the flowering of art and writing as the world wars faded and the newly mobile masses could collect like runoff from the tortured continent to the north. The Ancient history is only the beginning…

During the day, I learned about path-finding, history, and sea life, and in the evenings my mother read to us from local literature such as the Odyssey, the Iliad, My Family and Other Animals, even A Connecticut Yankee in King Arthur’s Court (the sharpest satire on jingoism and culture shock ever written.)

My parents had a gift for making the most of teachable moments.

The move turned out to be an excellent choice for all of us: Older Brother became a track star on the international circuit, I found a crop of kindred spirits, Younger Brother’s precocious historicity kept growing, Mom became a successful working photographer (and, as it happened, a role model of working womanhood for every intelligent female friend I had), and Dad got paid to help people – then towns – then governments get better and better at handling their money and improving their chances for a sustainable future.

The day I drafted this is the 38th anniversary of that move.

Dad was great at practical stuff. He genuinely liked humans, despite being such a historian. He often said that people are like table wine. Each one is a blend of different strains: good and bad, clever and foolish, creative and not, good with money and profligate, nice and otherwise… and each person’s blend is a little bit different. If you can accept each of them as the blend they are, and not try to change them – into a different blend, or even into beer, for instance – then you could really come to appreciate the variety that this world has to offer.

People are what they are. Accepting that makes for better connections.

The first time he taught me to drive was when we were on vacation in France, which was cheaper to get to than the US. We had rented a historical farmhouse that was about to become a gîte (at which point the price would go up), so we got all the benefits – a fireplace Younger Brother could stand up in, window sills two feet thick to sit on, a lush yard going down to a creek at the bottom with a moat up one side of the yard, a line of stately chestnut trees, twittering birds, fresh eggs and raw milk from the neighbor – for considerably less than we should have paid.

The rental car looked like it came straight out of a matchbox, but it was a real, rattly little French Renault. Dad sat in the passenger seat and directed me to the driver’s seat. He told me about the brake, the gas and clutch, the gear shift, the friction point, and how it all came together. I got the friction point coordinated and tested it a few times.

Then he said, “Okay, here we go.” I checked the friction point again and then stopped. He said, “No, I want you to go. Go ahead and drive across the yard.”

Oh, okay then. I can do this.

I grabbed the wheel tightly, engaged the gear, and eased past the friction point.

The car snorted briefly, pawed the ground, took the bit firmly between its teeth, and off it went. Or so it seemed to me.

The car charged off the gravel, kicking it up behind. It careened over the lush yard, carrying us past (fortunately) the huge stone house. It rocked and bounced off of molehills, scoring crazy tracks through the soft green earth.

I noticed my Dad was yelling, but he never yelled, so that was confusing. I didn’t understand a word of it, anyway.

Completely out of its metallic mind, the car charged past the trees, heading straight for the neatly-dug moat.

I was helpless to stop it. My own involvement had escaped my awareness completely. I simply hung onto the steering wheel for dear life, eyes wider than ever, completely absent to the fact that MY FOOT WAS ON THE GAS.

All at once, Dad finally got his full-grown leg around the gear shift and kicked my foot off the gas pedal and stamped on the brake in one astoundingly swift move.

The car sputtered, died, rocked to a standstill.

Its front wheels were on the lip of the moat. Below us, three feet of water and unimaginable depths of sticky mud glittered silently.

Little clods of earth trickled out from under the front tires and dropped in, stirring tiny clouds as each one descended through the water and into the mud.

All was quiet. Even the birds were too shocked to peep.

I sat there, frozen, hands locked on the wheel. I was alive. And dry. It was shocking.

I didn’t dare to move.

I heard Dad take a breath, and then take another. I felt, even with my head still turned away, two completely different speeches considered, then thrown away before he even made a sound.

I turned to see what he’d finally settle on, and whether it would finally involve a pair of hands wrapped around my throat – something I’d never seen him do yet, but you never knew, especially after a performance like that.

A pair of blue lasers drilled me to my seat.

Very quietly, very clearly, very firmly, he said, pronouncing each word distinctly:

“When what you’re doing doesn’t work… Try. Something. Different.”

Words to live by.

It was years until I was anywhere as green as Bordeaux. I lived along the Mohawk Trail in my 20’s. My excellent friend Paul was the hub of a wide circle of friends who, even if we couldn’t always stand each other individually, felt strangely as if we were still part of the same tribe: Paul’s tribe – or, as we called it at the time (such was his gift for invisible influence) The Tribe.

Paul was a master of appreciating people just as they were – even if that was not necessarily what the person in question wanted to be. He was the first to say, in assured tones,

“You’ll figure it out, Bella.”

He wasn’t kidding, either. He had complete faith in me, in spite of the evidence. I don’t know why. It sure helped, though.
My Dad died in early February 1999 while swimming in Egypt. I still remember the way the word “No” echoed off the walls of my little room at 4:08 am, when I got the call. The second flight on my 3-legged trip back East was overbooked, and I was going to get bumped.

I went up to the desk with my untucked button-down shirt, uncombed hair, and my own pair of blue lasers. Very quietly, very clearly, very firmly, I said, pronouncing each word distinctly, “My father is dead. I’m going back to bury him. I will be. On. That. Plane.”

And I was.

On January 23rd the following year, Paul decided to sleep late, and never woke up. On the plane to his funeral, I wrote to the father of one of my oldest friends from Egypt days, who had end-stage cancer. It started something like this:

“I’m on my way to a dear friend’s memorial, and I’m keenly aware that life is short and time is passing. Even though I don’t know you well, because you were my friend’s father rather than my friend directly, you matter to me. I want to let you know how important you’ve been throughout my life.” And then I told him about the ways his life had intersected mine over the years, brightening it along the way.

It was the last letter he received in this life.

Deathiversaries.

That’s my word for those days that sneak up on the calendar, dropping shards of stabbing tears out of a clear blue sky, breaking my knees for a moment as the agony of the unfillable absence hits me anew.

Now, not to strain the violins further, but the period that encompassed the deaths of my father, Paul, and my friend’s father also encompassed several other bereavements, a crippling stroke of my grandmother’s, the heartbreaking failure of my almost-marriage, the end of my nursing career due to illness, being too sickly-weak to make it to the mailbox and back for months, starting a new tech career from nothing but raw talent and pure luck, and moving.

And I really hate moving.

That was all in 18 months. I was a different person at the end of it. I’m sorry to say that it was someone who could face the devastation of CRPS with a lot more poise, but it still sucks.

Last Monday, January 20th, my old neighbor and teacher Mrs P died in her sleep. I haven’t seen her in 38 years (minus a week) but something as sharp and bright as faceted crystal slid out of my world.

My kitten Ari was a comfort to me, flinging himself firmly onto my body, as if to shove his strength and warmth into me.

He was enormous in every way: 10 pounds at 10 months and all of it lanky muscle, enormous love, enormous cheer, enormous charm, enormous athleticism, enormous independence, enormous courage, enormous confidence, enormous sense of humor … he was enormously unusual, even for a cat. He was an enormous invitation to life, just by the way he lived it.

Four nights after that, Ari disappeared. The following morning he was found on the road, dead and cold. Our Lovely Neighbors got us through, from finding his body to explaining to J to telling me. (I’m weaker now. It’s the buckling knees I remember.)
Partner J dug a perfect meter-deep grave, bedded it 6” deep in sprigs of fresh California bay while I blew sage smoke in, and I carried my kitten down to his final spot in the sun, at the bend in the path where he played with our dog and the Lovely Neighbors’ numerous cats.

I took the loss hard.

I’m an old hand at grieving. I can walk through the stages and the process in my sleep, although my body handles it worse all the time.

  1. The initial devastation and shock.
  2. The tasks:
    1. communicating the news,
    2. planning the funerary rites,
    3. preparing the final rest,
    4. performing the rites one needs to lay the deceased, as well as life with the deceased, to rest,
    5. cleaning up their things,
    6. comforting each other,
    7. getting something to eat,
    8. reminding everyone to be extra careful and remember to drink lots of water, which we tend to forget nevertheless.
  3. The reactions:
    • Noticing the way sunshine lands on my skin and birds sing in the trees but it seems to come from a world that’s not quite the one I’m in.
    • The way I have casual surges of wishful thinking: wouldn’t a bullet in the brain be nice about now? This isn’t suicidality (I promise), it’s my mind’s way of signaling that it’s overwhelmed by horrible feelings that it can’t do anything about, and it’s tired and doesn’t know what to do.
    • Re-learn the daily habits that this person (of however many feet) used to be involved in. That’s so dislocating. I don’t need to eyeball a certain corner of the bed before moving my feet now. I’m not even awake when I do that. It’s so horribly weird to wake up by realizing I don’t have to look.

Then the misnamed “stages” of grief, which are really nodes, which can be visited in any order.

  • The anguish, where life without that person has to be faced.
  • The anger, like, why couldn’t that little cuss cross under the bridge as usual, instead of testing one more damned limit and crossing over?
  • The bargaining, although I stopped bargaining years ago. I don’t seem to do that now. Too many unanswered prayers wept and bled into silence.
  • The sweet memories that stab like a ray of sun in my eyes, bringing tears that gradually wane over time, until those memories bring mostly sunshine.
  • Finding a new pattern beginning to emerge in my life, one that encompasses that absence without filling it, but making it less of an obstacle over time. They call that “acceptance”, but I think that’s a bit of a misnomer. I’d call it adapting.

I’ve only realized how very deep and interconnected life is by losing parts of mine. In that 18-month period of multiple losses, I found myself mulling the image of a complex weave on a loom, where each person and each influence in my life was a thread.

Some threads were solid and stable, some were wildly colorful, some thick with burrs, some wove in and out of the pattern, some were knotty and strange, some were pure gold.

When a major thread, or a lot of threads of any size, were ripped off the loom, then the fabric was distorted and there was a visible gap in it for a long time. I could weave on, but that band of the fabric was weaker – sometimes for years, sometimes for a lifetime. It takes a very long time to rebuild from the loss of enough warp threads.

It takes time to work new threads into the weave of life, and longer still to see which ones work in the overall pattern, and which ones fall out on their own – or need to be pulled out, for the damage they do to the rest.

Some people and influences are part of the warp, as they’re meant to stay in the weave for its length and are made to be strong. Career, close family, good friends, matters of identity – these are all warp threads which usually shape and color our lives all along its length. Each one has its own color and texture and breadth, which varies from person to person, and each contributes a depth of color and texture to the weaving that nothing else can provide.

In life, unlike fabric, the warp threads are highly individual.

When one of those gets ripped out, the whole weave … well … warps.

Some people and influences are weft threads, and are easier to change out. Doctors are usually weft threads, although the need for medical care is a warp thread for some of us. Jobs are weft, while careers are usually warp.

I lost a number of warp threads in that 18-month period. Between the end of January and the second week of February, the closest bereavements hit, year after year. The weave of my life has warped, over and over, in the armpit of winter.

I shift my stance from relying unthinkingly on having a lot of strength inside and out, to being mindful and precise about where to put my diminishing attention and energy.

I’ve learned to be more and more aware of good times, genuine love, beautiful days, radiant people, perfect moments, delicious food …

When I look back, I have far fewer regrets when I really noticed good things at the time.

I didn’t expect to have that kitten in the first place.
Even in this season of bereavement, I didn’t expect to lose him so soon.

But when he was here, keeping me permanently in a mild state of befuddlement because he was so much larger than life but still so very young, I sure noticed.

One day, that should be a comfort.

Meanwhile, as CRPS continues to change the game on me, I’m trying to learn to handle bereavement-amidst-deathiversaries with this new and different body-system.

My autonomic system is normally in a state that maps most closely to that of someone who’s being continually beaten with a live cattle prod, but years of practice have taught me when to ignore it and how to manage the results somewhat.

It gets better and worse from time to time. Stress, uncertainty, poor diet, missed meds, solar flares (believe it or not), and injuries, all crank up the volume on my oscillating central nervous system.

Bereavement is stressful, unpredictable, and contributes to poor diet, missed meds, and injuries. (Possibly solar flares for all I know.) Deathiversaries are a hardwired physical memory of bereavements. Having both at once is like being hit from both sides at once. Double oscillations that don’t cancel each other out, but feed into each other and magnify their effects.

All right… What’s an oscillating nervous system like?

Right now, the skin on my face is so raw that my partner’s nice springy beard feels sharper than a cheese-grater. My left lower leg wants to turn into a lump of Dacron, impenetrable and basically useless. My wrists and forearms, well, the less said the better, but I have to hold my mug with both hands to avoid wearing what’s in it. I went outside in soft shoes today (I usually wear hiking shoes) and the friendly little stones in the yard slowed me down considerably, as each one wanted to get way too personal with my foot-bones.

That’s the physical side of CRPS.

Because of the brain changes that make that stuff happen, there’s a parallel process that happens on the emotional side. Imagine the same degree of relentless rawness and unquenchable pain inside the heart and mind, and you’ll have some idea what it’s like.

I’ll give you a minute, if you like.

I don’t mean to whine, it’s just a fact of life with this disease. It takes a lot of managing, because my mental state wants to default to, well… how distressing and upsetting it is to be beaten continually with a live cattle prod.

How do you deal with an oscillating nervous system?

When your world is being purged, it’s important to replenish and nourish. This means extra antioxidants, extra meditation/biofeedback, extra hugs, and – if possible – someone else to clean the house and help with laundry and cooking.

One must eat, clean, and cope, and if it takes help, then I ask for help.

Herbal lemon balm extract helps cut the flared nerve pain. Chamomile and lavender tea, maybe with tulsi, helps me get to sleep. Some people do well with vervain or ashwaganda.

Homeopathics like ignatia amara and hypericum ease other parts of my nervous system responses. Also, I use an essential oil blend from Young Living called Valor, to reduce the hotwired panic reflex and hyper-alertness.

In case it isn’t obvious …

I don’t care what academics say, I only care what works for me. Empiricism is the only form of science that matters in the individual case.

I keep busy in order to keep my mind from exploding over the surfeit of losses and memories of losses, while CRPS takes the brakes off of all the feelings – physical and emotional alike.

This leaves me to manage the resulting inward chaos with whatever poise I can fake, because I know that a certain part of it is grief but a certain part of it is simply brain damage.

Either way, it will ease up in time.

So I keep busy, take my supplements, comfort the dog (whose heartsick look would make a stone weep), try not to draw attention to my partner’s look of not knowing what hit him, and wait …

Mostly, I wait for the balm of time, because it doesn’t change the loss, but it helps me learn to live with it.

Also, it moves the deathiversaries into my rearview mirror for another year. Until then, I’ll hold the love and leave the pain as much as I can.

Lastly, I wait for the fierce oscillations of my nervous system, humming and shaking like a five-foot-high tuning fork, to decrease and diminish and eventually …
quiet down …
to … a …
stop.

There is always an afterwards. Survival is simply a matter of getting to it.

Managing CRPS under this kind of duress is not magic, it’s persistence.

I keep breathing and let the awful moments pass. I’m old enough, both as a person and a CRPSer, to know that there are better ones ahead.

All I have to do is get there.

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2013 retrospective

I’m writing a retrospective, looking over the past year. It’s one good way to get my head out of the muddled present.
boat-mancallingastern
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.
George_Goodwin_Kilburne_Writing_a_letter_home_1875
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 got reacquainted with my body and, of course, my mind, with considerable help from a capable team at the University of Southern California. I felt like I missed a lot of the “coursework”, so to speak, because my cognitive function was so horribly screwy. (In fact, I had recurring nightmares about finding myself in school partway through the term, with no idea what my schedule was and not even knowing what classes I was taking, certain only that I was doomed to failure.)
poison_skull
Identifying my screwy cognitive function (or rather, dysfunction) as, basically, “acquired ADD” and treating it accordingly allowed me to play some catch-up after the fact.

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.
girl on a flat beach kicking a ball high
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.

Big grinning woman in spectacular Hawaiian ceremonial dress dancing with her arms
Photo: Joanna Poe in Honolulu

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.

Stone angel with hands clasped in prayer, standing on a pillar, sun like a glorious halo
Halleluiah!

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 🙂
me-fingers-peace
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.
Earth seen from the moon. Earth is gibbous.
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 🙂
Detail from the Crab Nebula,

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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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