what works – Page 6 – Life, CRPS & Everything

Isy’s principles of blogging 101

Isy / October 30, 2013October 30, 2013 / recipes, self-care, useful links, what works

Quite a few people I know are going into blogging. Most of them are CRPSers, all of them are clever and interesting, and I think that is terrific. I couldn’t find a Blogging 101 that wasn’t oriented towards cashcow blogs, so I figured I’d better write one.

Each writer who writes as themselves is unique, and the more of us who write truly about CRPS (or whatever we struggle with), the more others will begin to understand what’s really at stake when we talk about managing and even curing it.

First, let’s knock off some assumptions…

What it isn’t

– A blog post is normally not a chapter in a book, or a news article, or a short story — unless it is. If you’re posting any of the above, it means you’re writing a particular sub-category of blog, which is a good thing to be clear about. (Generallly, a blog is a place to work out ideas which subsueqently turn into books or articles, we’re writing for.)

– It’s not a journal. Generally, it’s creepy people who want to read other people’s journals; most of the rest of us are uncomfortable with that feeling.

– With that in mind, writing a journal entry before writing a blog post can really help deliver a punchy, powerful blog post.

Then let’s talk about the almost unlimited potential…

What it can be or do

– A great place to work out ideas that later go into books, articles, and so on, with more focus and a better understanding of the audience. The interaction and feedback you get on each nugget of thought is a great way to learn how to tune your writing and make your ideas clearer.

– Pre-marketing. When people love your blog, they’re liable to be interested in any work that comes out of it: books, articles, even speaking tours or movies.

– Wonderful way to connect with people in your target group, the group of people you want to explain things to or share things with.

And now some basic guidelines…

What a good blog usually is or does do

– Each post has one or two main points. A post is a limited space, oriented towards people with not a lot of time — either because of work, attention span, or memory issues. Keep each post to the point.

– Short posts get read more. Kinda sad, but true.

– The above is a good reminder to keep the writing “tight”, that is, no needless words, no needless sentences, and no needless paragraphs. (Another reason why journaling is so helpful — we can get the need to gnaw on an idea out of our systems, so we can step back and deliver it more tightly and strongly in less space.)

– Be particular about which posts get long, and keep them engaging to someone outside one’s own head. Extended metaphors or an underlying plot can keep people reading.

– Serious stuff matters. Humor keeps people reading. The two often go together really well, or at least can take turns gracefully.

– Keywords/categories/tags (the terminology depends on the blog host) are important. They help people find your blog online, so choose terms that people are likely to search for.

And finally…

Further tips and suggestions from my experience

– As I have to remind myself now and then — my readers are people outside of my head, not in here with me 🙂 This helps me explain and unpack when my first impulse is to be telegraphic; it also keeps me from belaboring a point that’s bothering me more than it would bother someone else.

– I get a lot out of watching the director commentaries on good/entertaining films, especially if there are director commentaries on the deleted scenes and outtakes. Hearing how they chose to eliminate much-loved or super-cool scenes in service to the overall piece, is like a mini-workshop on creative structure and knowing what your priorities are. Most notably, the concept of eliminating “repeated beats” is key to keeping my blog posts solid. I’ve deleted some great lines, but they aren’t missed. It took awhile to realize that, if they won’t be missed, they aren’t needed.

And now for a practical note…

Choosing a setup for blogging on

If you have access to a server and a web geek, read no further. You’re set. Just do what they advise and ask for any help you need.

If you’re totally new to all this, it’s not crazy to go to http://blogger.com, set up a Google account if you don’t already have one, and go through their step-by-step process for setting up and customizing your blog. The upside is, they really protect you from spam and thin out the hacking issues. The downside is, once you’re hacked, you’re hacked. They don’t seem to have a way of letting you build in extra protections.

If you have some geek skills and can get access to a server or hosting service, you might prefer http://WordPress.com to build your blog site with. It’s highly customizable and you can choose from plenty of forms of protection, which you can alter, tune, and change as you like. Downside: the spam is horrific. Upside: You can always upgrade your hacking protection.

There are a growing number of options, but I’m describing what I know and have worked with myself. Hope it’s helpful.

Happy blogging 🙂

Link list

Predatory mis-links are so common now, I aim to be more diligent about providing lists of the links I actually use in my blogs. That’s not a bad tip, actually, and it was first suggested by one of my readers 🙂

Rock stars

Isy / September 19, 2013July 8, 2023 / brain care, care team, critical thinking, meds/drugs, neurotransmitters, radical presence/radical acceptance, self-care, what works

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.

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.

Figured out where they overlap with the brain damage caused by chronic CRPS.

Then it was the neurochemistry.

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.

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.

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.

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.

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 on one side. That’s what’s backward!

Imaginative experience and rebuilding the brain

Isy / July 30, 2013July 30, 2013 / activity, brain care, imp-possible, perspective, quest for a cure, science, Uncategorized, what works

In 1986, the course of neurologic treatment changed forever when Mark Block, one severely spine-injured young man, chose “imp-possible” over “impossible” and, every day, spent hours imagining how it would be to walk again, imagining his “wires” getting hooked back up again, riding a wave of inner certainty that can only be called a gift.

He mentally rehearsed endlessly. Day after day after week after month.

And then, months into his care, he told the nurse, “Watch this,” and made his foot twitch. The first nurse dismissed it as a spasm. The second or third nurse got the doctor.

The doctor stood over the foot — really close — and said, “Do it again.” Twitch.

“Again.” Twitch.

“Again.” Kick.

One of the great moments in medicine.

Upon discharge, he walked out of the hospital.

Some of the meditations from my pain psychologist are visualizations. They’re made for a mass audience, not for people with chronic illness generally or CRPS specifically, so a certain amount of tolerance with the language is required. (At one point, the narrator says, after a pregnant pause, “Looking good.” Oh for heaven’s sake.)

Fortunately, she’s dropped pearls of wisdom about what’s important in these exercises, so I’m (naturally) mulling over a new set of scripts which attain those ends a wee bit more gracefully. (Of course, the files will be freely available to download.)

The key point is, it’s important to imagine what it feels/looks/smells/sounds like to be really well, really functional, really active, really smart again. Here’s the lowdown:

It’s not just a set of images, it’s a multisensory experience that I imagine as clearly as a good memory.
It’s important to do so vividly and frequently.
It’s important to think of imaginative experience as a good working hypothesis, rather than a hopeless quest or pointless daydreaming.

That’s key. Making it seem real, and not dismissing it afterwards. Over and over again.

That’s how the brain is persuaded — molecule by molecule, link by link, cell by cell — to give up its current structure, which pins so much of the neuro-anatomical, neuro-chemical and neuro-endocrine dysfunction in place.

Then, in many cases — and with suitable support from nutrition, psychological care and physical activity — it’s possible to reverse-engineer a healthier, more functional neuro-setup.

It takes time. It takes dogged persistence. It takes a vivid imagination — which can be developed, if it’s not already there. (Like getting to Carnegie Hall: practice, practice, practice.) Last but not least, it takes a smidgen of luck.

The imaginative experiences, if all goes well, help your neurological structure leap the chasm between what it is and what it should be. It’s an enormous leap of faith to get started, let alone keep going for as long as it takes to rewire such an astoundingly complex structure.

Of course, inner resistance and outer events are liable to leap out and knock us off track, because that’s what they do… and we have to find ways to pick ourselves up and dust ourselves off and get back on track as soon as possible.

It’s a huge job, inside and out — all that leaping.

But it’s not impossible.

I’ve been mulling experiences that I can imagine failing to do with my current body, but remember doing with my healthy one. I think I’ll write them out (word-painting at its most precise) and build really great imaginative experiences to come back to, again and again.

Running; sailing; riding; studying; traveling; writing complex books; lecturing on neurology, pain, and healing — you know that’s what I’m thinking about.

What would your imaginative experiences be? What would you leap the chasm for? What could you immerse yourself in, week after week, month after month, maybe year after year, for the chance of pulling yourself up to it?

It’s an interesting question, isn’t it? I have a feeling my list will change with time. As I sit with these imaginative experiences, I’ll see which ones really keep on giving, and which ones were better in theory than practice — and, of course, I’ll find the one I haven’t thought of yet, which will turn out to be key.

At the moment, the hard part is coming back to reality afterwards. That can really suck. But there are ways to deal with that — instant distraction, for instance — and the more I think it over, the more I think it’s worth it.

Recipe: Even Brain Food Shakes evolve

Isy / June 8, 2013 / basics, nutrition, perspective, recipes, self-care, what works

As my digestion has gotten more frail, I’ve had more and more trouble with my Brain Food shake.

I went to a powder, because organic kale was hard to find and unwieldy, and the nonorganic kind smells like a chemist’s armpit. And was still unwieldy.

But those shakes still hit my stomach like a cannonball.

J listened to me complain for the second day in a row and said, “Don’t eat fruits and vegetables together. Of course it’s impossible to digest.”

I stared at him a moment. “I used to know that,” I said with chagrin.

That was over a month ago and I think I’ve finally figured out how to make the greens taste like something other than pond.

So here are the current incarnations of my Brain Food Shakes, the simplest way to get maximum nutrition with minimal effort:

Morning Shake:

– 1/4 pound Trader Joe’s frozen Wild Boreal Blueberries (high anthocyanins, low toxins)
– heaping soupspoon almond butter (good oil, protein, minerals) (TJ’s is cheapest)
– Cal-mag supplement (for nerve transmission, teeth and bones; 1 tablespn Lifetime brand, blueberry flavor)
– 1/8 tsp clove powder (massive antioxidants, calms nerve pain, and I love clove)
– ~3 oz apple juice concentrate (malic acid helps clear cellular detritus)
– stevia (stabilizes blood sugar, cuts any lingering bitterness)

Whizz it until the flakes of blueberry skin are more or less uniform and quite small.

I’ve recently added:

– fat pinch of schizandra berries (massive antioxidants, seems to stabilize neurotransmitter behavior; whole berries take extra time in the blender)
– lecithin (improves digestibility and oil uptake)

Once everything’s whizzed down smooth, I add at the last minute:

– 1/2-3/4 cup blueberry kefir (I really like Lifeway brand, blueberry or plain)

The point of blenderizing is to chop open those cells so the nutrition is easy to get to, but with kefir or yogurt, the cells only work if they’re intact. So I whizz in kefir just until blended, maybe 2 seconds.

I mix in blackberries and fresh local berries when I can. On the road, I use dried currants, which are an overlooked “antioxidant powerhouse”, in modern marketing lingo. They can make the sweetness overwhelming, though.

This afternoon (fruit is more appropriate in the morning, veg in the afternoon) I tried something like this:

Afternoon Shake:

– Vegetable juice (TJ’s Garden Patch, but I’m open to suggestions)
– Scoop of green powder (I get distinct results from Garden of Life brand Perfect Food Raw; brain really perks up)
– 1/4-1/2 an avocado (cleans up blood vessels, great oil)
– 2 handfuls chopped kale (most nutritious veg per calorie; thanks to TJ’s for taking the work out of prepping organic kale)

– 1 handful sliced cabbage (sulfur for brain, glutathione precursor; also, does something magical to the kale so it tastes smooth and mild)
– salt (reduces ANS/POTS symptoms of dizziness and wonky bp)
– lecithin
– 1-2 individual grains of Epsom salt, a.k.a. magnesium sulfate (sulfur for the brain, magnesium for nerve transmission and electrolyte balance)
– water enough to make it go

Has a wonderfully fresh, pleasingly grownup flavor. A bit of cilantro, onion and lemon, and you could call it gazpacho.

I’m considering a pinch of curry powder, for the antiinflammatory circumin and that wonderful taste. It doesn’t need it, but it could add a bit of variety.

I’ve often said that it HAS to taste good, or I won’t be able to keep doing it. And, since I test regularly (that is, try to do without), I know I have to keep doing it.

And as long as it tastes this good, I’m happy to do so.

Breathing

Isy / May 1, 2013 / ANS and fight-or-flight, basics, care team, reiki/meditation, self-care, tasty words, what works

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.

Unexpected adventures with the rent

Isy / April 3, 2013 / adaptation, ANS and fight-or-flight, critical thinking, loved ones, nature, what works

Yesterday I did 10 minutes on the treadmill. Today, I walked almost a full mile of this hill in 18 minutes and 16 seconds — no shuffling, no stopping, lots of striding, not much slowing down. Woo hoo!

I’d better start scouting trails and footpaths around here. I’m going to need more options soon.

As I calm my breathing in preparation for my autogenic exercise (more on that later), I have to admit that I had some angst to work off, and that probably had something to do with the pace I kept up.

Last night, I realized I’d lost my ATM card. I have one bank, one card, and one checkbook. … Er… had…

The card was gone.

The checkbook was empty.

I’m fresh out of cash.

And rent is due.

Suuuuuuuuuucks.

Welcome to My Brain on CRPS!

To be completely apt, these should be thoroughly scrambled.

I went to the landlady’s bank to see if we could do a wire transfer.
Turns out they’re closed on Wednesday.

I called a different branch and asked if they could.
No, not without an account of my own.

I asked if I could open an account with a wire transfer.
After 20 minutes on hold, it turned out that I could only open an account with cash or a check.

Rather than repeating myself, I said, “You realize that does me no good.”

I called my bank (a local savings bank) in Massachusetts. They were pleased to tell me that someone had called in my missing card and it had been cancelled promptly. 2 weeks to get another one.

They couldn’t do a wire transfer because they’re rather old-school, and I hadn’t gone into a branch and filed the appropriate form in person.

But — and this is why I stay with them — they didn’t end the conversation there.

After exploring several possibilities, which turned up as dead ends, I thought of Cougar, one of my angels (a word with specific meaning.) He bears a passing resemblance to a slimmer and semi-shaven Jerry Garcia..

A recent photo by yours truly.

But, more importantly, he takes my mail. Why?

In case you hadn’t noticed, I move around a lot. (I’m looking for a place that has an affordable cost of living, good soil, first-rate medical care, and no extra pollution or radiation, and one day I’ll find it.) I’m here in California for awhile for medical care, BUT, no matter where the rest of me goes, my mailing address remains the same.

The benefits are tremendous:

Not only is my steel-sieve brain spared the affliction of changing my address every time I move,
Not only are my ridiculous paws spared the trouble of wrestling with envelopes and handling papercuts (a task which cougar claws are apparently well-adapted for),
But my memory and cognition issues get a real break from having to deal with pieces of effing paper. I have developed a mental block around dealing with pieces of effing paper, so I get them into softcopy as soon as possible.

Or, rather, most of the time, Cougar does… Because he doesn’t just take in my mail, he scans it in and sends me softcopy of anything I ask him to open. This means I have COMPLETE RECORDS of everything I need to keep track of.

He’s the Magnificent Mail Mage, and I’m grateful. Take that, Pain-Brain!

He’s my current Cash Carrier, now. The management staff at my lovely little bank have agreed to work with him as my designated agent, and will provide him with the cash I request — which he will then send to me via Western Union, so I can take care of business here. And with it, I’ll pay rent, open a bank account locally, and try not to let this happen ever, ever again.

Meanwhile, it’s time to get my heart rate down from the clouds and that strangely full feeling out of my tissues. Easier said…

While the excitement is over for the moment, I have a vivid memory of the stress-tracking line on the biofeedback machine, and how bloody hard and bloody long it takes to get the level to drop after it goes up over something as small as one giggle.

This was no giggle. In fact, it was several hours of no giggle. None. A totally giggle-free period.

I found it stressful.

The walk helped. And I hope — when I find some good forest trails to explore — to spot some wildlife.

Meanwhile, I’m off the hook for laundry and shopping. It all has to wait until tomorrow. Bonus!

Everyone should have a little cougarosity in their lives…

Posture matters, across species

Isy / March 8, 2013 / adaptation, critical thinking, CRPS knock-on effects, massage/bodywork, perspective, self-care, what works

For the past forty-mumble years, and for some time to come, my experience of life is shaped by the particular body I’m in. The reciprocal nature of the mind-body experience fills more books than I’d ever want to read, and that’s saying something, so let’s cut past that idea of, “Wow, the mind can influence the body and the body can influence the mind, but neither has sole control of the steering wheel” and look at the subtle, but strangely clear, ways that it plays out – at least in me.

I lived in a dog-friendly marina. – Trust me, this is relevant.

It’s not just about the scenery.

I found that, even before I knew the neighborhood dogs, I could tell which ones belonged on the dock by their posture as they stood, sat, walked, and moved.

I saw dogs in every degree of getting along — or not.

I saw the active posture of dogs who were used to plenty of food and care…

and dogs who clearly weren’t.

This was interesting to me as I was coming out of a period of being thugged on by every force outside myself that had a duty to care for me. Being, not only neglected, but frequently tormented and abused in response to most of my efforts towards survival and care, left me very nervous indeed.

Not good for the brain. Or anything else.

I was having trouble with my posture, and – limited by impaired kinesthesia (the sense we have of where our body is in space) – I was working out exactly what the trick points were.

– My low back was in a tight sway, sticking my stomach and butt out egregiously. I lost over an inch of height to that sway in my back.

– I recently realized that, when I fall back in this posture, my abdominal muscles are braced outward. I’m not slack in the belly; the muscles are braced for an incoming blow!

– My neck was hunched against my shoulders. This was funny because I did used to have a bit of a weightlifter’s neck, short and thick; but that was many years ago… when I lifted weights.

– My tailbone was curled in tight, which I only realized after my physiotherapist at the time taught me to straighten it out as a way of releasing tension on the nerve “sleeve.”

– The points of my shoulders were rotated inward. I attributed this to an effort to ease the nerve opening through my shoulders, but that doesn’t actually make sense.

All of these things reduced effective nerve flow to my limbs, shortened the wrong muscles, limited blood flow to where I needed it most, and reduced my capacity for physical exercise.

And you can see how happy it makes me!

Since activity is key to managing CRPS and keeping the autonomic nervous system under some kind of regulation, this is actually a huge problem.

Good posture is not about vanity, it’s about feeling better, being stronger, hurting less, and surviving tolerably well.

Watching all those dogs running around and deciding whether to let others sniff their butts,

You’re not imagining things: the pit bull is missing a leg.

I realized exactly what my posture looked like: a dog in a hostile area, not wanting to fight, but protecting its spine while bracing for blows. Always ready to snap into action. Never knowing when things will go sour, but pretty sure they soon will.

That’s what those years had brought me to. It was a reasonable response, but not useful.

This is what’s really going on when I fall back into that posture.

I’ve managed to explain this “braced dog” image to my current physiotherapist, who’s wonderfully willing to work with my rather original views. He comes up with ways to tell my body how to stand/sit/move like a calm, alert animal, instead of one that’s braced for the next fight…

I can’t do anything about the 3 extra cup sizes
this endocrine dysregulation caused, but
my back and shoulders hurt less anyway.

And I remind my too-nervous nervous system that a calm dog can snap into a fight about as fast, but tends to find far fewer of them.

In the meantime, relaxed animals have a lot more fun.

Postscript on self-imaging

Nearly every time I see pictures of someone in regard to posture or movement explanations, it’s someone really fit.

Now, really. Is that who needs to know?

Much as I loathe looking at myself from the outside, using my own image here is preferable to the implicit lie of using others’ figures. So here I am, warts (so to speak) and all.

/shrug/ Could be worse.

Waiting

Isy / March 5, 2013February 6, 2016 / adaptation, ANS and fight-or-flight, CRPS knock-on effects, radical presence/radical acceptance, what works

I’m sitting in the lab’s waiting room, recovering from the most recent vampire attack.

It’s always a bit of a circus. As I said to the lab tech, “I used to be a trauma nurse. What would be the fun of being an easy stick?”

This time, I had the joyful opportunity of having the first lab tech assess my veins and go find a better vampire without even poking me first. His hands were actually shaking by the time he left.

All I could do was laugh to myself. I used to have hosepipes for veins. They were still leathery, full of valves, and inclined to roll, but with a sharp needle and good technique, you could nail ’em with your eyes closed.

Now it takes 5 minutes with the warm pack (hot water in a blue glove) and the sharpest needler in the house. She got it in one.

In thematically related news… I’ve been essentially incommunicado since I moved into the new cabin. Internet is supposed to come tomorrow and AT&T has knocked $50 off my bill for not providing service yet and having terrible communication with me (losing notes, calling back the wrong week, trying to send me on wild goose chases) when they do get through.

Every effort to do anything other than nest — carefully, gently, and in small controlled increments of effort — seems to take 10 times the effort it should. Not two or three times. 10 times.

All I can do is laugh to myself… and, when necessary (such as when someone’s looming over me with a sharp instrument and a purposeful expression), sitting firmly on my perpetually hair-triggered fight-or-flight response.

As I said to the same skillful lab tech, “I have good doctors, and I’m finally getting lab tests, PT and good care.”

This is why I protect my mental faculties so vigilantly. They let me assess the real risk, the real effort, the real impact of the moment, so I can talk the CRPS-triggered responses down out of the sky.

And then wait for my system to recover.

I think I’m ready to go now.

Pain rating scales that describe reality

Isy / February 19, 2013February 6, 2016 / adaptation, critical thinking, CRPS knock-on effects, Dept. of Blith. Obv., documentation, quest for a cure, radical presence/radical acceptance, science, what works

I’m filling out paperwork for these assessments. It’s a lot of homework, especially since they didn’t provide anything I could edit in softcopy. (Wait… how long have computers and the internet been around? Doesn’t the ADA require hospitals to provide access? … ok, never mind. Anyway.)

　
I got to the usual 1-10 pain rating scale and my gorge rose. That’s so irrelevant to my life now that I can’t even throw a dart at it.

　
Between my self-care strategies and spectacular mental gymnastics, the level of what most people would experience as “pain” is a secret even from me, until it’s strong enough to blast through the equivalent of 14 steel doors, each three inches thick. At that point, the numeric level is off the charts.

　
What’s useful and relevant is how well I can cope with the backpressure caused by the pain reflexes and the central and peripheral nervous system disruption this disease causes.

　
You can read on without fear, because for one thing, it’s not contagious, and for another, your experience of pain — whether you have CRPS or not — is uniquely your own. This is mine, as it has changed over the years…

Step 1: Acute CRPS, with otherwise normal responses

My first pain rating scale, just a few years into the disease’s progress, was suitable for a normal person’s experience. My experience of pain was still pretty normal (apart from the fact that it didn’t know when to stop):

Mental impact	Physical changes
0
No pain at all.
1
Hurts when I stop and look.
3	3
Neither looking for it nor distracted.
5	5
Noticeable when concentrating on something else.	Nausea, headache, appetite loss.
7	7
Interferes with concentration.	Drop things, grip unreliable.
8	8
Difficult to think about anything else.	Trouble picking things up.
9	9
Makes concentration impossible.	Interferes with breathing pattern. No grip.
10
Can’t think, can’t speak, can’t draw full breath, tears start – or any 3 of these 4.
Unrated even numbersindicate a worse level of pain than prior odd number, which does not yet meet the criteria of the following odd number. Note that weakness is only loosely related to pain. I drop things and have trouble picking things up at times when I have little or no pain. However, as pain worsens, physical function consistently deteriorates.

Notice how the scale ties the rating numerals to physical and mental function. This is crucial, for two reasons — one personal and one practical:

　
– Personally, I can’t bear to let misery get the better of me for long. Tying the numbers to specific features keeps the awful emotional experience of pain from overwhelming me. Making the numbers practical makes the pain less dramatic.

– Practically, in the US, health care is funded by a complex system of insurance. Insurance companies are profit-driven entities who are motivated not to pay. They don’t pay for pain as such, only for limits on function. This makes my pain scales excellent documentation to support getting care paid for, because MY numbers are tied to explicit levels of function. (Hah! Wiggle out of that, you bottom-feeders.)

Step 2: Early chronic CRPS, with altered responses

My next was upwardly adjusted to describe learning to live with a higher level of baseline pain and noticeable alterations in ability:

Mental impact	Physical changes
3	3
Neither looking for it nor distracted. Forget new names & faces instantly.	Cool to touch @ main points (RCN both, dorsal R wrist, ventral L wrist). Hyperesthesia noticeable. .
5	5
Interferes with concentration. Anxiety levels rise. Can’t retain new info. Can’t follow directions past step 4. May forget known names.	Nausea, headache, appetite loss. Grip unreliable. Hyperesthesia pronounced. Color changes noticeable.
7	7
Absent-minded. White haze in vision. Can’t build much on existing info. Can follow 1 step, maybe 2. May forget friends’ names.	Drop things. Cold to touch, often clammy. Arms & palms hurt to touch.
8	8
Speech slows. No focus. Behavior off-key. Can’t follow step 1 without prompting.	Can’t pick things up; use two hands for glass/bottle of water.
9	9
Makes concentration impossible. Hard to perceive and respond to outer world.	Interferes with breathing pattern. No grip. Everything hurts.
10
Can’t think, can’t speak, can’t stand up, can’t draw full breath, tears start – or any 3 of these.

Notice how specific I am about what general tasks I can complete — following instructions, lifting things. These are the fundamental tasks of life, and how do-able they are is a fairly precise description of practical impairments.
　

Step 3: Established chronic CRPS

And my third changed to describe living with more widespread pain, a higher level of disability, and — most tellingly — a physical experience of life that’s definitely no longer normal:

Mental impact	Physical changes
3	3
Neither looking for it nor distracted. Forget new names & faces instantly.	Cool to touch @ main points (RCN both, dorsal R wrist, ventral L wrist, lower outer L leg/ankle, R foot, B toes). Hyper/hypoesthesia. Swelling.
5	5
Interferes with concentration. Anxiety levels rise. Can’t retain new info. Can’t follow directions past step 4. May forget known names.	Nausea, headache, appetite loss. Grip unreliable. Hyper/hypoesthesia & swelling pronounced. Color changes. Must move L leg.
7	7
Absent-minded. White haze in vision. Can’t build on existing info. Can follow 1 step, maybe 2. May forget friends’ names.	Drop things. Knees buckle on steps or uphill. Cold to touch, often clammy. Shoulders, arms & hands, most of back, L hip and leg, B feet, all hurt to touch. L foot, B toes dark.
8	8
Speech slows. No focus. Behavior off-key. Can’t follow step 1 without prompting.	Can’t pick things up; use two hands for glass/bottle of water. No stairs.
9	9
Makes concentration impossible. Hard to perceive and respond to outer world.	Interferes with breathing pattern. No grip. No standing. Everything hurts.
10
Can’t think, can’t speak, can’t stand up, can’t draw full breath, tears start – or any 3 of these.

The CRPS Grading Scale

The other scales measure the wrong things now. Asking me about my pain level is bogus. It would have the asker in a fetal position, mindless; is that a 5 or a 10? Does it matter?

　
I need to avoid thinking about depressing things like my pain and my disability. I focus pretty relentlessly on coping with them and squeeezing as much of life into the cracks as possible — on functioning beyond or in spite of these limitations.

　
The fourth rating scale is much simpler than its predecessors. It’s based, not on level of pain or disability, but on the degree to which I can compensate for the disability and cope past the pain. Therefore, this rating scale remains meaningful, because it describes my actual experience of life.

Mental impact	Physical changes
A. Coping gracefully	(baseline)
Track to completion, baseline memory aids sufficient, comprehend primary science, think laterally, mood is managed, manner friendly.	Relatively good strength and stamina, able to grasp and carry reliably, knees and hips act normal, nausea absent to minimal, pulse mostly regular.
B. Coping roughly	B
Completion unrealistic, extra memory aids required and still don’t do it all, comprehend simple directions (to 3-4 steps), think simply with self-care as central concern, unstable mood, manner from prim to edgy to irritable.	Moderate strength and stamina, grip unreliable and muscles weaker, balance goes in and out, knees and hips unreliable, nausea and blood sugar instability alter type and frequency of intake, occasional multifocal PVCs (wrong heartbeats) and mild chest discomfort.
C. Not coping well	C
Hear constant screaming in my head, see white haze over everything, likely to forget what was just said, focus on getting through each moment until level improves, manner from absorbed to flat to strange, will snap if pushed.	Muscle-flops, poor fine and gross motor coordination, major joints react stiffly and awkwardly, restless because it’s hard to get comfortable, unstable blood sugar requires eating q2h, bouts of irregularly irregular heartbeat.
D. Nonfuntional	D
Unable to process interactions with others, suicidal ideation.	Unable either to rest or be active. No position is bearable for long.

There is no Grade F. Did you notice that? As long as I have a pulse, there is no F, which stands for Failure.

In the words of that divine immortal, Barrie Rosen, “Suicide is failure. Everything else is just tactics.”

So what’s the point of all this?

Documenting our own experience in terms that are meaningful and appropriate advances the science. The treatment for this disease is stuck in the last century in many ways, but that’s partly because it’s so hard to make sense of it. The better we track our experience with it, the better outsiders can make sense of it.

　
Since studies, and the funding for them, come from those who don’t have the disease, this is the least — and yet most important — thing that we can do to improve the situation for ourselves and those who come after us.
　

This isn’t a bad snapshot of the natural history of my case, either. Understanding the natural history of a disease is a key element of understanding the disease. Imagine if we all kept pain rating scales, and pooled them over the years. What a bitingly clear picture would emerge.

　
I’ve never sat back and looked at all of these pain rating scales together. It’s certainly an interesting mental journey.

　
Important legal note: These forms are available free and without practical usage limitations; to use, alter, and distribute; by individuals and institutions; as long as you provide free access to them and don’t try to claim the IP yourself or prevent others from using it. All my material is protected under the Creative Commons license indicated at the foot of the page, but for these pain scales, I’m saying that you don’t have to credit me — if you need them, just use them.
　

Bien approveche: may it do you good.

Pushing back on neuroplasticity

Isy / January 29, 2013February 6, 2016 / adaptation, brain care, critical thinking, CRPS knock-on effects, humor, imp-possible, loved ones, radical presence/radical acceptance, self-care, what works

I got the Sydney norovirus right before it hit the news. I’m recovering, but slowly; the persistent low-grade nausea is annoying — and worrisome. I don’t want my body to get the idea that this is the new normal…

Brain plasticity is a major culprit in CRPS and its maintenance —

from the first refusal to cut pain signals off…
to the growth of the brain cortex area that monitors that body part, so it can handle more pain signals and provide less space for normal body areas…
to the deeper remapping and rewiring that alters cognition, disrupts memory formation, screws up autonomic signalling, knocks endocrine and digestive function out of whack…
and so forth.

It’s important to stay on top of the brain, so to speak.

Thanks to the brilliant pioneering work of Dr. V. S. Ramachandran, we now know that mirror therapy and reducing-lens therapy can remap the brain’s perception of injured body parts to something closer to normal. That was a huge help with the pain, when I had CRPS in limited areas.

The reality-shattering concept behind mirror therapy is, basically, that conditioning can work in reverse: rather than allowing ourselves to be the passive objects of what our brain becomes accustomed to doing, we can push back against the brain’s alterations using our natural mechanisms of perception and intent. (The basis of Dr. Ramachandran’s discovery is that perception alone can provide the altering input. Intent gives it more focus, force and direction.)

The relationship between body, intention, and brain is interactive, multi-dimensional, and interdependent.

Having said that, it’s not completely reciprocal, nor is it ever under perfect control — unlike a good trapeze act.

If we could will ourselves better, then, given the extraordinary focus and determination of my fellow CRPSers, I know for a fact that we would have done so already. I never had met anyone with as much determination as me, until I met my core group of CRPS friends. If will alone were the answer, we’d have it!

CPRS is complex indeed.

Anyway… back to what we CAN do.

Communicating with the brain, in language it can’t ignore

The basic principle of RE-re-mapping the brain is this: describing to the brain, in language it can’t ignore (combining sensory perception and intent), what it should be doing.

In my Epsom bath article, I described rubbing a washcloth over body parts that have distorted perceptions and telling them silently, over and over again, “It’s just a washcloth. Feel just a washcloth.”

Where there is normal perception, or even nearly-normal perception, I stroke from the normal area to the abnormal area — never, ever in reverse! the brain understands the concept of “spread” — and tell my brain and body, with absolute focus, “This is what normal feels like. Feel normal HERE now. This is normal. Feel it here now. That is the correct feeling. It’s just a washcloth. Feel a washcloth.”

Not a burning sheet of sandpaper twice the size of my leg. Not a blunt sense of almost nothing, somewhere else.

A washcloth, right here.

When I’m doing this, I don’t even think about what the abnormal feelings are like; I came up with those metaphors just now, sifting through my memory. I shut the incorrect perceptions out of my mind and dismiss them, over and over, as obviously false information.

I have to take a break sometimes when the pain is bad and just breathe, but I don’t think about it, I focus on the point: learning to perceive what’s really there.

Vision, tactile input, kinesthesia (meaning that, as my hand and arm moves over the body part, my brain’s mechanisms triangulate on where things really are and its picture of my body gets corrected), and the focus of intent, are all part of the exercise.

This combination of factors is what makes it so effective. The multisensory inputs, the constant messaging of proper information, eventually overrides the false information.

Slowly at first, but with increasing pace, the normal sensation spreads over into the abnormal area. Every time. Not always completely or perfectly, but often both.

So far, I’ve reclaimed normal sensation in my back and most of my left leg, and I’ve kept the sensation and function in my arms at a level almost incompatible with the decade that I’ve had this disease.

Considering how bad things have gotten when I let this slide, the value of this exercise is clear to me.

Pruning your neurons intelligently

Learned responses are due to the basic learning mechanism in the brain:

neurons hook up, and a connection (or association) is made;
if the connection gets used (or the association is allowed to stand), more neurons hook up to make it stronger;
once enough neurons have hooked up, the connection becomes like a good road;
and the thing about good roads is, they get used, even if they’re used for something odd.

It’s important to manage the roads in your brain, especially when you have a neuro-plasticity disease like CRPS:

Make sure the roads in your brain are useful to you.
Do that by pruning the connections you don’t want.
Prune those connections by letting the associations die.
Let a connection die by deciding to think about, or do, something else, whenever it comes up.
Consistently. Persistently. Relentlessly.
And keep making that decision every time it comes up.

It works by a negative, which is not how we are taught to do things: turn away from the response, shut out the perception, ignore the link. That’s how you prune an unhealthy connection.

It takes time, but it works. The time will pass anyway, so your brain might as well be better off at the end of it…

Masters of distraction

We CRPSers are masters of distraction — not to mention the kind of persistence that this pruning takes. We can learn to be diligent about applying it to sensory associations we don’t want. This is where ADD, used selectively, becomes truly — oh look! Yellow feet!

… Wait, what was the connection I was about to make? I’ve forgotten.

See? It works!

The joy of having a bit of ADD and being a meditator is, you really can choose when and how to let out the ADD — as long as you do it often enough. It’s a great tool, and I’m grateful for it.

Pruning specific sensory and functional associations

I’ve had recurring nausea for months now. It’s related to upticks in stress, of which I’ve had more than an elegant sufficiency in the past year.

Then there was this tummy bug…

It’s day 5 and I haven’t vomited in 3 days but I’m still nauseous. While this bug is supposed to leave one nauseous for quite some time afterwards, I really don’t want my brain getting the idea that sending nausea signals is going to be the new normal. I’m not going to let the nausea become habitual. So I’m pruning those connections.

I can’t will nausea away, as it comes from quite deep in the brain from a primitive place. And, unlike pain, distraction doesn’t help much for long.

So I’m balancing the use of ginger (short acting, “hot i’ the mouth”, sugary) and anti-nausea meds (long-acting, makes me slower in brain and gut) to shut down the nausea for a good part of each day.

This means I’m not nauseous for a good part of the time. This helps retrain my brain away from constant nausea by letting the relentless association, and the neurons that make it, die off. I’m going to keep after it over the expected week of recovery still to come.

Only constructive connections, please.

That’s one example. It doesn’t take much thought or mental discipline, just persistence.

My lovely friend X has a recent example of something different, an obviously inappropriate new association being made.

She multitasks, making full use of her functional time. When she was eating, then turned aside to the plastic phone or plastic computer to respond to someone, then turned back, her food suddenly tasted and smelled like plastic.

That is a very errant association indeed. Prune it!

She is now putting aside the laptop and turning off the phone while she eats, so the association doesn’t develop further. Moreover — and she may have just enough ADD to pull this off — she hopes to be able to switch her attention immediately when the plastic taste pops back into her — Look! Yellow feet!

Egrets make great distraction, especially in funny socks.

It takes time to let those connecting neurons die, but if you get on it quickly, as X did, it can turn around pretty well and pretty quickly.

The Principle of Primal Exclusivity

This is simpler than it sounds. It’s the opposite of pruning.

When you’re doing something really basic (or primal), like eating or drinking or sleeping or running or sex, keep your attention basically on that activity. It helps keep your brain straightened out about those things.

You really don’t want them getting bollixed up, because rewiring primal functions takes more work to undo.

That’s one reason why insomniac advice is about having a calming bedtime routine and sticking to it: it’s retraining the brain around a primal activity. The brain needs absolutely consistent signals over a period of time, to retrain successfully.

Incidentally, sex (alone or together) is the only activity that (ideally) engages both sides of the autonomic nervous system: arousal is mediated by the sympathetic nervous system, and orgasm by the parasympathetic nervous system. It provides a balancing mechanism I can’t think of occurring in any other sphere of life. Done properly, it could be the perfect autonomic tuning tool…

And with that happy thought, I’ll leave you to wash your hands against this norovirus and do whatever seems best.