Treating CRPS enough to have a life

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

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

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

 

Common-sense note on narcotics

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

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

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

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

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

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

MEDS

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

Basic principles of medication

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

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

INTERVENTIONS

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

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

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

Now what?

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

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

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

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

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Documentation — Long time? Timeline!

I collected health info on others for years. I’m what clinicians call “a good historian” — and in the health context, it means someone who can tell you exactly what happened to them and when it happened, and they turn out to be right.

This is fine… as long as I can keep track, and as long as the story is short enough for someone else to remember after a single telling.

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

This isn’t going to remain true for any case over a couple of years in the making, and certainly not for a case that even started out with multiple diagnoses: volar ganglion, tendonitis, and repetitive strain.

When I noticed that a doctor’s eyes were glazing 5 minutes into my recital of events, I knew I had to do this differently.

I started keeping a timeline. It was a nuisance to set up, because I got injured at work, and U.S. law doesn’t necessarily allow me to get copies of my records under those circumstances.

So I drafted my first timeline from memory, journal entries, and my datebook, and asked my doctor’s staff, as sweetly as possible, to please check the dates for me. They loved the timeline and were happy to do so.

As you can see, this is before I had a lawyer, and reflected my personal tendency towards information overload:

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

As you can see, I decided to keep my timeline in a table. I found that to be the most natural way for me to organize the layers of information in a readable way. But then, I had just finished hand-coding and debugging about 21 pages of HTML tables in raw markup. Tables were easy for me!

To some people, a table of text just looks like word salad.

 

I can understand that.

 

There are other ways to organize information: brain maps, fishbone diagrams, bullet lists with nested lists, even labeled images linked together. Search any of those terms, or even terms like “information architecture” or “flow charts”, to look for ideas.

I took a later version of this to my first QME (QME=Qualified Medical Examiner, a consultant called upon when a U.S. insurance company disputes care in an injured-worker case.) Bless his stern and rock-bound heart, he gave me excellent advice. Here it is, as close to his wording as I remember:

  • “Leave out the insurance stuff. It’s not my department. It’s distracting, annoying, and clutters up the timeline for me.”
    (I was not offended, because I’ve worked with a lot of hotshot doctors. I fully expected the brusqueness and just listened to the words for information. That information was pure gold.)
  • “In fact, thin this out a lot. I want facts, data, not suppositions or what you read. I want to know exactly what happened to you and what your doctors said or did. Everything else is filler. I’m a doctor, so doctors’ ideas are what I care about.”
    (That was frank! And an excellent statement of inherent bias, which I really appreciated knowing up-front.)
  • “Take out the personal impact? No! No. I want that in there. It tells me how this really affects your life, and I should know that.”
    (He was almost human when he looked at me then. It was a cool moment.)
  • “But I DO want the personal impact to be visually distinctive, so I can screen it out when I’m looking for the medical part alone.”
    (That’s fair.)
  • “I’d also like to be able to find your work status more easily. This is a worker’s compensation case, after all.”
    (Good point.)

That man should advise more designers. He’s retired from his medical career now, and I hope he’s enjoying himself immensely.

My next timeline, for my next QME, was much leaner and it distinguished between three key types of info: straight medical information, work status, and personal impact.

timeline-beta
Click for the full PDF.

Did you notice how the hand images I wrote about before are referenced right in the timeline? This is a great way to build your case. The pictures kick the message of your disease progress and your needs right through concrete.

Incidentally, this uses mutually-reinforcing teaching principles: multiple sensory inputs, plus multiple paths to the same info, equals excellent retention. Your doctors will really be able to remember what your case looked like and what happened along the way, what worked and what didn’t.

Dr. F was pleased to see the table and thought it was basically a good idea, but looking at it through 78-year-old eyes was a different experience. He gave me his own feedback, speaking as someone who had gone through more medical records and had more problematic vision than anyone who’d looked at it yet:

  • “Yes, it’s nice that you picked out the work status, but I want to be able to see surgeries, x-rays, the really important stuff, just as easily. No, even more easily.”

I picked those out in bold and flagged them in the left column:

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

Before long, I learned to condense multiple entries so I could use one row for several visits that were about one issue, or where there wasn’t much change:
timeline-condensed
Then I saw a doctor who had more human sensibilities. He said,

  • “Why not use colors? I want to see surgeries and tests in different colors.”

I asked, “Do you want the different kinds of tests in different colors, so you can distinguish Xrays from MRIs from nerve studies at a glance?”

  • “No, no, that’s too much. I can read EMG versus MRI; I don’t want too many colors. I want the surgeries to really stand out, though. Put them in red.
  • “And I want to see the legal pivot-points, too, because that affects your case.”

Easy enough.

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

Then the first page grew legs. Someone along the line said,

  • “One more thing. I’d really like to see your allergies and medical-surgical history immediately. If you could put that up front on this, that would give me the most critical medical information right off.”

That was a real forehead-smacker for me…

I used to be a triage nurse. I used to collect certain information on every patient I saw, regardless of age, sex, race, or what they came in with.

TRIAGE INFORMATION:
– Name, date of birth.
– Any medical diagnoses.
– Any surgery, with dates.
– Current medications and doses (if they recall), and what they take it for. (This fills in a lot of holes on the medical and surgical stuff — you’d be surprised what people forget. “Oh yeah, my heart stopped last month.” Good to know!)
– Allergies — and what the reaction is (because there’s a world of difference between something that gives you a stomachache and one that stops your breathing, and we need to know this if it winds up in the air or, heaven forbid, the IV line.)

This is basic. This is absolutely basic. It’s essential information that should be immediately surfaced on every patient’s chart. How could I take for granted that it would be easy to find in my medical record? The whole point of needing the timeline is that, after a couple of years, my medical record was a mess!

Also, after years of popping from one specialist/QME/consultant to another, I got tired of having to dig out the same demographic and billing information every time they had to generate a new chart.

I had a brainstorm: make the first page into a billing/demographic sheet, add the triage information, and start the table on its own page after that.

It all goes together on the medical chart anyway, and one of the unsung truths of medical care is this: make life easier for the desk staff, and they will make life easier for you.

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

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

  1. The first sheet has my contact, billing, and demographic info.
  2. The second has my more-extensive medical/surgical history, medications and yet more allergies, and priority notes, highlighting my CNS sensitivity and emphasizing that cognition matters most.
  3. The rest tells all the key points of 14, yes, 14 YEARS of injury and disease, in only seven and a half pages.

Here is the final result:
timeline-current
Every doctor, with one exception, who has seen this, has cooed — literally, cooed — with delight. They ask if they can keep it (I tell them to put it in my chart, so they can always find it. “Ooo, great!” they say.)

This one doctor looked at it, laughed rather sardonically, and said, “You spend way too much time on this.”

Clinical note: For the record, that is not an acceptable response. What clinician makes progress by dissing patients on the first visit? Right. None. The thing to do here is ASK; in this case, ASK how much time this patient put into creating the documentation. The answer certainly surprised this one.

I set him straight, in my sweetest tone of voice. I said, “After the initial setup, it requires only a couple of minutes of maintenance every few months. That’s it. Moreover, you’re forgetting that I used to be an RN and a software documentation writer; this information is easy for me to understand and easy for me to organize. If I CAN’T do this [gesturing to the document in his hand], you need to check for a pulse.”

He never sassed me again.

However, most of what I told him is true for all of us.

We are the subject-matter experts on our own bodies. Never forget this and never let anyone tell you otherwise, because they are wrong. You ARE the subject matter expert on your own life. Nobody else really knows how you feel or what you’ve been through.

 

It’s in your power to communicate that clearly enough to work with. It’s just a matter of figuring out how.

Once you get a timeline set up and put in the key events so far, it takes very little to maintain. I update mine before every key doctor visit — when I see a new one or when I need to see a QME or, of course, when I think a doc is losing the plot.

It takes me less than half an hour to update contact info, meds, and current entries, and I do that once or twice a year now. That’s a great effort/benefit trade-off!

Moreover, keeping a timeline has life-changing benefits besides simplifying explanations to my doctors. Every long-term patient can see how utterly transformative these changes can be:

  • The doctors take me and my case absolutely seriously from the get-go (or else it’s obvious right off that this person is never going to, and I need to move on. That saves time!) It stops arguments and attitudes before they even start. It makes me almost human in any good physician’s eyes, and that’s nearly a miracle, because, generally, they can’t emotionally afford to think of their pain patients as human. (This explains a lot.)
  • My medical records are a lot more accurate, because the providers writing them have this great cheat-sheet right there to help them stay on track and keep their facts straight. This has saved me more grief, bad treatments, misapplied care, getting meds I’m allergic to, and chasing red-herring issues with the insurance company, than I could ever count.
  • I can keep my limited brain-space free for handling the appointment and looking ahead, instead of trying to wrestle my complex history into shape. This makes my visits a lot more valuable to all concerned.

I consider my timelines to be worth roughly 1,000 times their weight in plutonium. A little bit of effort has paid off thousands of times over, and made it immeasurably easier to keep this messy, protracted, brutally complex case on track for nearly one and a half decades.

Now that’s a good trick!

clip-art-dancing-755667

Timeline Tips:

  • Put your name and the date on every page.
  • Put triage information (in second blockquote above) at the top.
  • Highlight surgeries and invasive procedures in bold and red.
  • Highlight tests and noninvasive procedures in a different color or style.
  • Highlight life impact, but keep it separate from medical info.
  • Attach the relevant doctor’s name to each procedure, diagnosis, or consultation.
  • Track adverse events.

Remember, this and all my blog work is under a Creative Commons Share-Alike Attribution license: do anything you want with it, as long as you don’t keep others from using it. I’d love it if you’d credit me with my work, but don’t let that slow you down.

Use it. Share it. Spread it around.

Bien approveche — may it do you good 🙂

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Rock stars

As many physicians have noted, treating chronic pain is peculiarly frustrating. Therefore, treating a pain condition as subtle, complex and intransigent as CRPS must be heartbreaking — though it’s never as bad as having it.

Don’t get me wrong
If you say hello and I take a ride
Upon a sea where the mystic moon
Is playing havoc with the tide

Most of us live in countries where there are practical limits on who we can see for care. Since there are few CRPS experts to start with, this tends to put us in tight spots.

So, meeting a new doctor, as many of us have said privately, is a bit like being a bride in an arranged marriage in a backward society*: you have no idea how you’ll get along, but this person is not only going to have a significant role in defining your life for the foreseeable future, but can torture and even kill you without any fear of the law.

14 year old bride with lowered head and sad, helpless expression, standing next to an elderly man who peers at her as if she were a new car he was looking over.

It sounds dramatic, but that’s the bottom line. Think about it for a minute…

For one thing, nobody likes being in so vulnerable a position. For another, we’ve all paid the price for some practitioner’s ignorance or intransigence, somewhere along the way. The fears are not theoretical; they’re real and appropriate.

Suddenly the thunder showers everywhere
Who can explain the thunder and rain
But there’s something in the air

Add to that the fact that chronic CRPS tends to hot-wire the fight-or-flight mechanism, and you have to realize that the doctor is facing a situation that requires about a million times more tact and respect than they ever learned in medical school.

Don’t get me wrong
If I’m acting so distracted

And then there’s me.

I used to be an RN, so I can use med-speak fluently and, more to the point, I’ve got the background to understand the scientific material I read when it’s time to explore a new facet of this condition.

I was dealing with a full-bore case of ADD due to the mechanical and chemical damage of chronic CRPS. At the time, I wasn’t sure what to make of my psychiatrist, Dr. Todd Hutton. He’s so quiet that I simply couldn’t get a bead on how much attention he was really paying to what I was saying.

I was beginning to suspect that he was at least awake, which is a huge bonus in my book… But I had to have my duckies in a row, just in case.

Don’t get me wrong
If I split like light refracted
I’m only off to wander
Across a moonlit mile

Everything about CRPS goes off in different directions, so studying it is like working with refractions.

I studied up on the nature of the brain oddities that characterize ADD.
candleburn-1
Figured out where they overlap with the brain damage caused by chronic CRPS.
Sketch of brain, with bits falling off and popping out, and a bandaid over the worst
Then it was the neurochemistry.

candleburn-2

I have the neurochemistry of CRPS pretty well nailed, and found that, again, the overlaps with ADD were astounding.

How much of that awful, crippling fog we call “pain brain” is a treatable form of acquired ADD?

Do we really have to live like that?

I might be great tomorrow
But hopeless yesterday

I’m not so sure any more.

Then I looked at treatment modalities for ADD.

candleburn-3

The cognitive-behavioral stuff — like structuring your day, having contingency plans, staying in charge of your emotions, and creating ways to check yourself and to take care of yourself when things go wahooni-shaped — are pretty much identical, though CRPS adds a lot of material about pacing, communicating about functional and pain levels, and managing physical limits.

The pharmaceutical stuff has some interesting overlaps, too.

candleburn-4

Aside from narcotic pain control (which isn’t much good to many of us), treatment for CRPS neurochemistry tends to focus on serotonin, norepinephrine (noradrenaline), and dopamine; treatment for ADD neurochemistry tends to focus on epinephrine (adrenaline) and dopamine.

More overlap, or is that just a coincidence? Hah! No such thing, when we’re treating the brain.

So, after traversing my “moonlit (or candlelit) mile” of research, I showed up at the psychiatrist’s office with the following info:

  •  It’s probably related to the CRPS. (Nod.)
  •  It’s probably treatable. (Slightly qualified nod.)
  •  I can’t have Adderall, et alia, because my heart is dicky enough as it is. (Firm nod.)
  •  I could face Ritalin, et alia, but I’m already on Savella, which also boosts dopamine. (He shrugged and said, “Same molecule, different location.”)

After a bit more backing and forthing, he said, “How about Provigil?”

I’d seen a friend get hooked on it, so I didn’t leap out of my seat, but we talked it over. His reasoning was faultless. (Something I almost never say.)

More than awake, he was really engaged with my case. So I took the leap of faith and said I’d try it.

Trapeze_artists_trimmed

He said he’d supply me with samples of Nuvigil (a longer-acting form) since the maker no longer supplies samples of Provigil. (Pharma companies only provide samples of what they still have under patent. They’re in it for the money, remember…)

Don’t get me wrong

If I come and go like fashion

I had the singular pleasure of going in for my follow-up, dressed professionally for a change, and reporting that:

+ I had enough energy to get outside and move around nearly every day. This means laundry gets done, there’s proper food in the house, and I can get some of that so-necessary exercise.

+ I had enough focus to put together a settlement offer, which the insurance company accepted. (WOOT!)

+ I could change focus at need.

+ I was driving better, thinking strategically and more able to pay attention to what was going on around me at high speed.

+ I could sleep better, because I’d been properly awake and engaged during the day. (OMG!)

– My anxiety was no worse, but when it did kick in, it was harder to get it to chill. That was one drawback, but not a major one.

– Nuvigil tends to build up in my system, until suddenly I can’t sleep at all. It took about 5 days to clear it after that. So now I take half a tablet (that is, about 75 mg) every other day. That works quite well.

+ It’s not perfect — it’s not like being well — but I’m so much closer to being myself that I can actually think about what to wear again. (I used to be kind of a fashion plate, in the intersection of classic, practical, and colorful, with a dash of steampunk.)

 

I told him, “Love and the relationships I have make life bearable. But being able to think, and be productive, and learn things, and get some work done, THAT’s what makes my life worth living. This is giving me my life back. I’m really grateful.”

If I hadn’t grown up in New England (land of the unspoken), I might have missed the slight lengthening of his spine, the slight lifting of his head, the slight brightening of his face, the tiniest lift of a smile.

For once in my life, a doctor of mine got to feel like a rock star.

It might be unbelievable
But let’s not say so long
It might just be fantastic

I got into the car and drove away on a shiny September afternoon in Pasadena.

On the radio, Chrissie Hynde was belting out,

Don’t get me wrong
If I’m looking kind of dazzled

And it put the seal on everything.

For a moment, I tried to stifle the beaming joy that shot through me. Then sanity intervened.

glee

What I wanted to do was pull over, slap on a headset, and dance on the glittering lawn in front of City Hall, arms wide and the sun sparkling through my starry lashes.

I wasn’t sure the police would understand, though.

Instead, I danced in my car, grinning fit to split my head, bouncing my red SUV to the Pretenders.

Drawing smiles even in LA traffic.

Sometimes, the only right thing to do is dance.

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

 

Here’s the whole song. At first, I thought the visual story, with its false leads, dead ends, and triumphant ending, was distracting — then I thought about it for a second… 🙂

* Common sense note: obviously, not all societies that practice arranged marriage are backward. I know too many couples who have an excellent partnership and tons of love between them, who were picked out for each other by their nearest and dearest. It’s not arranged marriage that’s the problem, but those situations where there’s a lack of choice and utter helplessness of one partner. That’s what’s backward.

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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.
    .
  • 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.
    .
  • 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;
    .
  • 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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Breathing

Sooner or later, it all comes back to breathing.

Without adequate breath, obviously, nothing else matters. As a sometime ER nurse and continuing asthmatic, I’m more than usually aware of that fact.

I mean something beyond that, though. Something more pervasive.

Breathing, like walking, is one of those things that I keep coming back to as an interesting study — one that’s so fundamental that I forget, in between times, exactly how deeply it changes everything else in life.

I first began meditating in my very early teens, after basic instruction from my mother:

1. Think of a simple, unemotional mental image, like a burning candle flame, and breathe.
2. As thoughts come and go, let them go (sometimes, especially at first, I had to chase them off) then…
3. Bring your attention back to the image and the breath.

The image didn’t do me much good – I think fire is a little too emotional for me – but simply being at home to my breath, and letting the haywire-ness of the day drift off into the mist… with my odd and beguiling little cat softly nestled against my leg under the covers… did me all the good in the world. Especially at 13.

The language of breath is interesting. Breath, spirit, life, and insight often share the same word or sounds in languages around the world. For instance, in English, “inspiration” means both a breath, and a sudden idea; the root word means spirit. There is no divide between these ideas.


(Life, breath, spirit, ideas… how can these be separated? How can a life worth living, let alone a bearable life, let alone a pulse, exist without all of them?)

As I said, I’ve been breathing intentionally for decades. In my 20’s, I taught my ER and ICU patients a particular form of breathing which, I’d noticed, cut their pain response, lowered their blood pressure, and improved the level of oxygen in their blood — no matter what they came in with.

In 3 breaths the difference was noticeable, and if I could persuade them to take 10, we were halfway home.

It goes like this:

1. Breathe in through your nose.

2. Draw the breath all the way down into your lower abdomen.

3. Let it out through gently pursed lips, like softly blowing out a birthday candle.

4. Repeat.

The abdominal breathing improves lung expansion. The slight backpressure on the exhalation nudges extra oxygen into the system (the importance of oxygen can’t be overstated, especially in emergencies) and sends a gentle message to the blood-pressure sensors in the neck, telling them to lower pressure.

This kind of breathing activates the “calm down” part of the central nervous system, that is, the parasympathetic branch of the autonomic nervous system.

The extra oxygen helps clear some of the oxidative damage away.

It feels wonderful.

And it always works.

(Clinical note: for people with COPD, I did 2-3 breaths, and checked in. As with most adults with a chronic disease, they could generally be trusted to sense their limits and stop. Youngsters soon learn, though very few youngsters have COPD.)

Recently, I’ve learned a slightly different technique from the same psychologist I mentioned in my last post…

1. Notice my breathing. That’s all. Let everything calm down for a bit.

2. Draw the breath into my abdomen.

3. Gradually increase the size of those abdominal breaths.

4. Let the midchest join in, getting still more air in. Exhale from the top down.

5. Eventually, let air into my abdomen, then midchest, then upper chest — inhaling from the bottom up. My lungs are pretty fully expanded in the inhale now, and I still exhale from the top down.

6. I tell myself: My arms are heavy and warm. Soon, they are.

7. I tell myself: My legs are heavy and warm. Soon, they are.

8. I tell myself: My lower abdomen is warm and relaxed. The whole bowl of my pelvis becomes a sea of lovely calm. (I had no idea how much standing tension was stored there, at the bottom of the spine and where all the exits are — though it makes sense, when I think about it…)

9. Then I stop contriving my breathing, and let it just flow.

After about 15 minutes, well, life is good. Really good. Talk about activating the parasympathetic nervous system.

I’ve forgotten what else I was going to say. I want to be that peaceful and warm right now.

Oh yeah. The point is this:

Breathing well makes everything better.

It shouldn’t be that simple, but it is.

Excuse me. My limbs need to be heavy and warm… In a good way.

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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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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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Marathon — second thoughts

I’ve gotten some interesting responses to my marathon proposal, some of them very worried, bless their excellent, loving hearts. I feel I owe some explanation.

My tiny handful of fellow “imps of the possible” are all for it, completely understanding the uncertainties and sidetracks and possible (even probable) different endings in store – and knowing that it’s the reach that’s important, that spreading

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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