On the road again

I used to run between 3 and 12 miles, 3 to 5 times per week. Not so much because I wanted to be One Of Those Running Addicts, charging along with a ghastly snarl carved into their faces while insisting they were having a marvelous time. Initially, because I had to dump the stress from my nursing job without killing anyone, because there wasn’t enough Haagen Dasz in the world to smooth the edges of HIV care in 1991 or of working the only public ER in Washington, DC. Later, simply because it was fun, after the first few weeks of adjusting to the initial effort. When I had had to give up nursing due to illness, recovered my lung function eventually, then was burying someone I loved every other month while I learned to handle programming software enough to write about it, I needed a bit of fun.

Well, that was depressing! I sometimes forget that having an eventful life can correspond to having a catalog of horrors in the rearview mirror. It’s not all horrors, really, and my natural bent towards finding beauty in everyday life became well developed, as I dove into the beauties (or the work) of the moment as a coping skill, and then eventually because it’s so rewarding.

At that time my usual trail was up hill and down dale through a redwood preserve — to misquote William Allingham, “Up the airy redwoods, down the mucky glen.” Great for the calves.

Redwood National Park REDW9377

More to the point, getting out before work meant I could watch the sun touch the treetops high above, slowly stroking glowing gold down over their dusky purple and blue-green, each luminous inch bringing the birds roosting at that level to life, shrieking their fool heads off like this was the first time ever and they just couldn’t believe it!

THAT was definitely fun.

Coastal redwood

Speaking of fun: I’ve been reading thriller/adventure stories by an author who’s also an old pal. Like most thrillers and adventures, the characters are annoyingly fit. Unlike most thrillers and adventures, the characters have actual personalities (not just a set of quirks laid over a monotonously steely outlook), with the touch of weirdness I see in the people I’m drawn to, if I look closely enough. I certainly see it in myself.

These days, I have trouble identifying with fit, but I identify with weird just fine.

Suddenly, I couldn’t stand it any more. I got up, put on my sturdiest foundation garment, added a couple layers over that (it’s still chilly and soggy here) and went for a walk. My old, solid stride came back, the one that propelled my blonde fluffy self safely through the Tenderloin in SF and the drug commons of DC, with no more remark than, “Marines? Special Forces? How much do you bench press?” (The last was unusual, and actually made me pause to try and remember.)

I noted which clothes I went to put on, and moved them toward the door so it’ll be quicker to get dressed next time.

I forgot to stretch out afterwards, and getting up from this chair a minute ago was a useful reminder of the absolutely essential need to do so. Stiffening up happens!

I overdid a few days ago and it took 2 days to recover, so I know I have some exercise intolerance. I’m being careful (within the limits of my personality.) So far so good, and if I haven’t crashed and burned by this evening, I’ll know I chose the correct level of activity, and can increase first my distance, and then my intensity, by increments of no more than 10% at a time.

The tiny incrementation is frustrating for a former muscle-head, but I’m old enough (at last!) to know that little strokes really do fell great oaks, that the future will come anyway and I might as well be better for it, and the way to make that happen is to work at my margins and gradually, gently, persistently, open them out.

I don’t dream of marathons, but nor do I count them out. I don’t count them at all. I walk (briskly and sturdily) the dirt roads through my forests, and that’s enough for now, while leaving me plenty of room to grow into.

water_swimminghole-1

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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.
circulation-allbody-Anna_Fischer-Dückelmann_1856–1917
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.
children-Versailles_petit_appartement_de_la_reine_web
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.
Faience_beer_stein_with_ball_scene_on_brown_background_web
But I’m looking forward to knowing how to walk.

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Relentless

My pain psychologist is very insistent that 90% of my day has to be predictable. This allows my nervous system to heal and re-stabilize to the extent that it can.

I cannot even fathom that. 90% of my day? Do any of you have those kind of days, ever?

matchgrins-horsenwoman_decamps-pauline_4blog
Pauline Decamps? I’d love to credit this fantastic shot. Correction invited.

She’s been right about everything else so far, so I’m working on it.

Trying to bring stability to any single part of my life brings the inherent instability of life into high relief.

  • Every commute to the doctor’s office is a crapshoot. There’s no knowing just how long it will take, if there’s parking on the other end, whether anything unpleasantly LA will happen along the freeways on the way.
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  • Every trip out of the house, with all the neighborhood dogs and the roads being under construction here, puts the rest of the day on hold until further notice. Especially when my judgment is in the hopper because of pain, dysautonomia, or not being able to eat enough to prevent hypoglycemia.
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  • Every day is a mine field of discovering things I’ve forgotten and have to find a way to deal with, trying to clean up the past while coping with the present and preparing for the future.

poison_skull

It’s heartbreaking trying to keep up with this, but I can’t stop. This disease never quits. It never gives a break. I must try to keep up.

I thought I was stubborn. I thought I was adaptable. I thought I could be relentless. I have to say, this condition puts me in the shade.

This is one of those articles I wrote to help myself find the nugget of gold. I’m still looking…

George_Goodwin_Kilburne_Writing_a_letter_home_1875

I’m in a very small glass today, but that doesn’t change the scope of work — just what I admit I can do.

This relentlessness, this bitter intransigence, is part of any chronic disease. We find ways to cope, or we don’t make it.

  • I deal with the dietary restrictions by focusing on the wonderful things I can eat;
    antioxidant_foods
  • I deal with weakness by learning to ask for help;
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  • I deal with the pain by focusing on what gives me joy;
    Crab_Nebula-crop
  • I deal with bouts of forgetfulness and confusion by automating as much as possible and using external aids like a whiteboard, checklists, post-its and the apps in my smartphone;
    200px-Check_mark.svg
  • I deal with the heart, lung, and endocrine issues by finding new ways to do things, and rehearsing constant self-control in every single freaking aspect of life.

It just wears on me sometimes. It’s a lot to expect of myself day after day after day after DAY.

Perhaps the nugget of gold is simply taking credit for my imperfect, ongoing attempts to manage an impossible body of work: staying alive and on the right side of the ledger, and trying to make it bearable. It takes some doing, and yet I’m here now. The future terrifies me, but so it goes.

Marathon update:

A bloody pair of athlete’s feet, with ringworm that’s trying to consume my right foot, both fungi profoundly resistant to treatment… Have been joined by an ingrown toenail which looks like a grandchild of The Blob… Which itself is hosting cellulitis.

So I’m off my feet for the most part, wearing slippers when I must walk. I have to knock the cellulitis back by Friday, so the ingrown (which is an outgrowth) toenail (though it’s really the flesh) can be cut away, and part of my nailbed stripped. All those loverly nerve endings…

old_school_surgeon

It’s going to be a rough weekend. Perhaps I should just have it all cut off, ha very ha. Too bad that makes things worse in CRPS.

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Marathon update

For weeks, I could hardly move outside without injury. It was maddening. I completely ran out of arnica pills, my best tool for keeping soft-tissue injuries from turning into flares or spreads of CRPS.

At the same time, I couldn’t make myself do the meditation exercises I’d been assigned, where I’m supposed to let some strange man tell me what to relax. Getting anything but my appointments done has been nearly impossible.

Today, I walked half a mile, half of it uphill, and most of that at around 15 degrees’ slope — really. And so far, I’m just fine. It seems  a bit miraculous, after the past few weeks.

For the past few days, I’ve also been wrestling with my dead… and at the risk of appearing to complain, I’d probably better explain that.

I’ve been interested in re-remapping my brain to a more useful cartography (so to speak) for years; that’s what holds the most promise of moving CRPS aside and leaving more room for life.

Sheer gall, determination and bloody-mindedness can only get me so far. Pretty damn far, but I think I’ve hit the limit. I need to move beyond, because frankly, life is barely worth it and I won’t stand for that.

To gain enough mastery over my brain that I can really push it into a different shape means getting my conscious mind and subconscious mind to play well together. Sooner or later, THAT means coming to terms with a few things I’ve shoved under the floorboards. Then I can put them in their proper place, and make a reliable path around them. It’s no good trying to build new paths in a brain that’s booby-trapped.

It’s impossible to discuss these losses and bereavements and horrors without sounding pathetic or whiny, so I won’t. Tell you what, though, I’ve stopped editing them out, when they’re relevant.

Something’s come loose. It’s true. It does seem to be working.

I’ve finally gotten myself scheduled into my meditation exercises, PT, and cleaning up… and I’ve walked half a mile today, much of it really steep… and I seem to be fine.

Every marathoner knows… you really run it from the inside.

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The wall, redux — with demons on the side

Sooner or later, deep and chronic illness (like, oh, let’s take an example at random, CRPS) will bring you face-to-face with your worst demons. It’s only a question of when, and precisely how.

When I came to adulthood, I realized that I felt a powerful need to earn my right to take up space and breathe the air. You’d think I’d be a cringing slave with that underlying attitude, but I wasn’t. I felt I deserved good pay, reasonable work/life conditions, and common courtesy, because that was fair; I just didn’t deserve to live.

Once I could no longer work, but had to fight like mad to live, this was a bit stressful. Like many, I almost didn’t make it. But then, as the very deepest trough began fading into memory, I noticed that something remarkable had happened.

Rewind about 10 years… I was a nurse for eight years, which put me in a critical relationship to others at critical points in their lives. I might have dealt with 10 patients in an hour, but, in the moment that I was dealing with each person, that was the most important person in my life. I may have coded hundreds of people, but every life I fought for, I fought for with all I had.

There were no caveats or conditions: if you were my patient, you had my absolute attention every moment I was with you.

I think this healer outranks me, but you can see
how focused he is on his patient. It’s like that.

I found that it’s impossible for me to work hard for someone’s survival, and not come to care about them – no matter who or what they are.

Fast forward to where we started, after the deepest trough, around early 2010… I had spent several years increasingly incapacitated, used up all my money, all my favors, all my savings, and lost a lot of friends – some of them to the Grim Reaper.

I won’t go into the brutal and abusive bureaucracy of California EDD or Oakland Social Security offices, because if you haven’t been through it, you wouldn’t believe me. That bad. Worse, even.

I woke up one spring day, with a strange sense of dawning inside. It took an hour or two to wake up, and to realize that I’d been fighting so hard, for so long, for my own survival, that I had become important to myself.

I no longer felt I needed to earn the right to live.

Ever since that time, I’ve never had a serious case of any kind of block – writer’s block, self-care block, learning block, anything – that lasted more than a couple days, unless it was explicitly disease-related.

Then, with this move to a strange area, with no connections, near a city I almost loathe… To get real care, for the first time in years, from seven highly skilled and capable professionals…

I hit a wall. Not just a block, but a huge, massive, precision-crafted, towering, deeply bedded, gateless wall.

Since writing “Frustration at the wall“, I’ve been faking it in the hope of making it. That’s a lot of weeks to keep running up against the same damn wall!

I finally started talking about it – I’m a writer; I’m a woman; I process by words; let’s move on – and began to get unscrambled. Then I had the deeply disconcerting pleasure of having my brain picked apart, cleaned with a dental pick, and neatly reassembled by the deliciously incisive Dr. Faye Weinstein. 

I can’t help thinking that the following is going to strike a few chords with some of my lovely readers…

I am, as she said with characteristic precision, “a helpful, compulsively self-reliant minimizer.” Really, why should I trust these people, who wield the power of Gods over what happens to me?

There’s a deep part of me that says “blow that, let’s go hide instead” and off I go, hiding behind advising on Facebook and diving into books and catching up on others’ crises; my condition is not that bad, so my care is not really that important, and it’s not like these people care more for me than their own crap anyway, so I’m on my own really.

My distraction activity is all very worthy, so I needn’t justify it. But, well, so much for the many new things I need to do to put together my own health…

Unconscious reactivity could be the death of me yet.

I said this illness would raise all your demons, even the ones you’ve hammered a stake through the hearts of. It turns out that the squat and fetid cranks who propped up my old conviction that I “don’t deserve to live” are still there, farting wetly and hawking loogies.

With apologies to Heironymous Bosch.

The demons of our earliest perils can shape our responses to major change forever. The trick is to see them for what they are, face them honestly, and put them back where they belong: in the past.

(Easier said… I think a booger just landed in my hair. At least, I hope it was a booger.)

To add to that, with years of excruciating work behind me and more ahead, my old motto of “change or die” doesn’t carry the same weight: Yes, part of me wants to lie down and die. The frantic, aching, endless weariness is beyond description.

But change is more interesting. A lot more interesting. And I only get to do this life once.

Conscious curiosity could be the birth of me yet. With luck.

With a better sense of what I’m doing, I’m preparing to turn and, with tactful and gentle persistence, come to terms with those monsters.

I might as well. I’m going to be here awhile.

Speaking of which…

Marathon training update

After one day to recover from the trip south, I was able to pull off my .8 mile route up and down this hill, and recover enough a few hours later to unpack the car (that’s a lot of steps!) and get some things done. Today was a lot of appointments, which involved walking at least a mile on city surfaces.

On Thursday or Friday, I hope to increase my hill walking to 1.1 or 1.2 miles. We shall see. No more overdoing.

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Need more than "Dysphoria"

There’s an impressive clinical word for “feeling yucky” — it’s “dysphoria.” It’s literally the opposite of “euphoria.”
One of these people is Dysphoric and one is Euphoric. Guess… 🙂

The trouble is, there are so very many ways to feel yucky, or dysphoric, especially with a disease like CRPS, but only one word to describe it all. Our experience of life no longer maps to that of a normal person, but language can’t describe what we experience. However elegant it sounds, “dysphoria” is inadequate.

That’s about to change. Here are some words I’m adding to the lexicon, a short selection of the most common and most describable (because some are indescribable) of the dysphoric states I move in and out of…

Dysphoria Sunnysidedown
The particular kind of yucky I feel when I get up before I’m ready. It takes about an hour, usually, to avoid D-Sunnysidedown.

Otherwise, I get tremulous, nauseous, my heart races (but quietly), and I’m aware of a particular kind of fragile ghastliness in a minor key. If I really get up too fast, I fall over — muscles quit. This adds up to Dysphoria Sunnysidedown.



Flip ’em!

Dysphoria Darkofnoon
This is a natural consequence of D-Sunnysidedown and usually happens later the same day, but occasionally happens by itself. Darkofnoon involves feeling peculiarly ragged (as if my adrenals had been in overdrive for hours, which is accurate if I arose too fast), forgetful, physically weak, slightly shaky, and of course nauseous. Sometimes dizzy spells.

There’s a more solid kind of ghastliness, more in a dominant chord. Dysphoria Darkofnoon usually happens when the day is brightest, between 11 am and 3 or 4 pm.

Lying down periodically helps me get through the day, but I’m not likely to be quite right until a good night’s sleep and a proper start to the next morning.


Dysphoria Hate2Bme
Stunning levels of distraction, with a dense pale-grey cloud wound around and through my mind and perceptions, dissolving what it doesn’t hide.

It insulates me from such trivial issues as major appointments, where I put the keys, and the state of traffic lights. I can tell where my body is in space, but not how it feels. Likely to injure myself, risking further spread.

It would be tolerable if there weren’t any consequences or anyone leaning nervously away while looking at me with worried pity. When I’m experiencing Dysphoria Hate2Bme, the humiliation and underlying fear are the most dysphoric elements, though there is something intrisically unpleasant and destructive-feeling about the dense grey cloud.

Dysphoria Mitoshriek
This happens when I’ve overtaxed my body, though sometimes it happens by itself. I think of it as the mitochondria in my muscle and nerve cells all setting up a synchronized shriek of anguish as they fall over in a dead faint. (I don’t know how they scream while fainting, but they seem to manage it.)

It feels like my soft tissue threatens to dissolve when I try to get up or do anything. There’s a sort of wholesale, pitiable unpleasantness in mind, body and soul with the least physical effort.

My muscles react with a sort of “You’re kidding, right?” when I try to use them, and if I push through in order to get something done, it’s done by pure determination and then I’m out of commission for a couple of days. I pay hard for pushing back against Dysphoria Mitoshriek.

For all I know, my mitochondria have nothing to do with it, but mito self-care seems to help: tons of antioxidants, lots of vegetables, and as much horizontality as I can stand. I can tell when it’s time to start moving — about 3/4 of a day after I start really wanting to.

One thing that is no worry at all: I don’t ever have to worry about being too lazy.


Your faithful writer at 2 yrs old. I refused help; I was going to
cross that dry riverbed all by myself, come Hell or high water.
Photo: JLD Tifft, used by kind permission 🙂

Bodies and minds, like engines, were made to go, and I’m most at home when I’m going in mine.

After the intense inward training of living as usefully and zestfully as possible despite CRPS, can you imagine what it would be like to have all this determination and energy unleashed on the world if I were finally well again, and could focus on, remember, and do things on a vaguely regular basis?

Can’t wait to find out.

So this is peaceful ol’ me…

…saluting all that keeps me from that.

Speaking of which…

Marathon training note

I’m stable with walking 1.5 miles at a time, and recover fast enough to do more later that day. Will aim for 1.8 later this week, after recovering from this trip.

Despite spasms and cramps etc., I made it all the way home in 1 day yesterday, instead of splitting the drive into 2 days as I usually must. This amazes me. My eyes didn’t cross and my mind didn’t splay into a messy 10-pointed star, both of which usually happen after 4-5 hours of driving with hourly breaks. So, there are some key neurological pieces that are definitely doing better.

Yay cerebral blood flow! Yay exercise!

It might be smart to take today off and stick to PT exercises and tai chi. No more bloody relapses. But boy, I sure am heartened!

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Marathoning, murder, and masses

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

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

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

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

I’m grateful.

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

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

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

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

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

Breathe. Breathe. Breathe.

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

Not do-able. Not even think-able.

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

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

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

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

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

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

I will go on.

“Watch me go.”

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Putting together the team

I saw  my counselor this morning and told her I was thinking of running the marathon. She waited for me to go on, then said, “Wait, you’re not laughing. You’re serious!”

I waved a hand generously and said, “Take a moment to have your reaction…”

It was priceless.

After talking it over a bit, she began to get behind it, rather  breathlessly but with real glee.

I saw my PT just now, for our first conversation since his rather cryptic reply to my email. He doubled my treadmill time (up to 10 minutes from 5), and said without preamble, in his cooly unflappable way, “That marathon idea of yours? It’s going to be slow, it’s going to be hard work, but I think we can do it. It’s a good goal.”

I nearly burst with relief and delight.

He set a 5-mile limit on my exercise over the coming 2 weeks of my vacation, then checked and said, “You’re  going to come back and say, ‘He-e-ey, I did 15!”

Finally… a PT I don’t have to train.

Last, I saw my rheumatologist, who laughed in a pleased fashion and said, “I’m glad you’ve got a good PT for this. That makes my job a lot easier.” Didn’t turn a hair.

I’m seeing my primary care doc and my pain doc on Thursday.  As for data (I am a geek; gotta have data!) I have current baseline levels for all basic chemistries, immune globulins, and a complete blood count, plus vitamin C and D. I have cortisol reports from when I was in adrenal exhaustion.

I’d like a baseline cortisol test now, and talk over what other stress/adaptation/compensation markers we could be tracking and how often.

I might have to shop around to different labs to keep in budget, if insurance can’t be persuaded to cover the lab-based data collection, or if I can’t get it covered some other way.

I’m dead serious about not hurting myself. I’m also dead serious about going for this. In any case,  we might as well collect data, so if nothing else, we’ll have one damn good case study to publish.

See you on the trails.

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Letter to my PT – how about a marathon?

Dear [PT],

Something crystalized in my mind, after reading the preface to a friend’s book. (On Kindle here.)

I  do well with having rather demanding overarching goals. (Trauma nurse at DC General, software geek at Borland? yeah :)…) I have some good mental and creative goals (books on mythology and CRPS neuro-endocrine-immunology, 501c3 called “CRPS: Art and Spirit”, etc.), but my physical goals are reactive rather than proactive

Right now, it’s all about beating back the assaults on my function; there’s none of that necessary “F.U.!”-sized stuff on my horizon that can help me bring enough focus and determination to vault over such paltry issues as washing my damn hair. (One side of my face laughs wryly as I say that.)

There’s the shorter CRPS walk/roll/run in December, Quench the Fire!, and that’s a good, reasonable goal.

I need a slightly unreasonable goal, or I can’t really focus. Normal goals really do bore me. Sad, possibly warped, but true. 

And this reactive mindset is doing me no good at all — look at my last stallout. Awful. 

It’s just awful to be reactive in my goals, and especially in the goals for my horribly challenged physical self — my only vehicle of life. 

I have to do better. 

I need something more — something a bit larger than life to strive for. (Just ask my mother. I’ve been like this since I was at least 2.)

So… I’m considering running next year’s marathon.

Positives:

+ I have a year to pull myself together. If you could help hook me up with some kind of structure for training, so much the better.
+ Keck staffs the medical tents, which I find automatically reassuring.
+ It’s slightly crazy, but not completely insane. Perfect.

Negatives:

– Mostly pavement. A real problem. (I don’t have to train on pavement, though.)

– Potentially difficult, risky and expensive. …Just like life.

– Ummm…

I think the Ayes have it. What do you think? And, if I’m in town, I’d be delighted to do the 5/10k at the end of this year. Not as a goal, but as a coincidental benefit.

It’s all about pacing.
I realize we’ve only just met, and this might strike you as brash or ill-considered. I’m not saying it isn’t, but it’s very much in character and, with a little bit of faith from those backing me, could be just the mental kick to help with quite a few intermediate hurdles.

And, of course, I might finish.

(With a little publicity, this could be pretty cool all around. Fat, brittle, middle-aged, chronic CRPSer turns marathoner. — Huh, that gets MY attention! And how cool if I was not the only one….)

I used to be a middle-distance runner, going 4 miles up and down a canyon or 6-10 over surface streets, 2-5 days a week. I kept getting back to it, pre-injury; I enjoyed it, and looked for places to live where it was safe to run.

Marathoning is a different mindset, but I think it’s learnable. And learning to do a marathon in a paced, calm, controlled, ANS-managed, non-frantic manner… well, that’s one hell of an F.U. to CRPS!

I look forward to hearing what you think about this… I think 🙂 I really do want your advice and would love to be able to check in with you as I go, so please mull it over. I’m seeing my whole team next week, so I’ll get to do plenty of hashing-out. I’ll blog it and talk it over with some of my old guard this weekend, too, so I’ll be better prepared for our conversations.

Many thanks,

Isabel


Writing on science, adaptation, surviving, and running…
* Health and Life with CRPS-1: http://livinganyway.blogspot.com/
* Cauterizing the Bleeding Edge of medicine and science: http://biowizardry.blogspot.com
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