Regen at Black Butte

I came to CA for a leisurely camping trip with my sweetie. (One can have enough of the “long-distance” in a “relationship” until you have to cut some slack on one or the other. I chose the former.)

I landed in the fiery heart of an explosive crisis in his life, but one thing that nursing and 10 years of serious illness have taught me is, other people’s crises are not mine. It frees me up to have all the empathy in the world, without losing my own balance. (Much… :-))

Our idyllic excursion into nature with nothing much to do has turned into … an idyllic excursion into nature with nothing much to do, but a lot more to talk about.

We wound up at Black Butte Country Store and Camping, …

The store as you approach through the intersection.

…run by his old pals Tom and Margie, a charming and hospitable couple who came up from the East Bay – so they know damn well they’re onto a really good thing here. Margie’s smile just won’t quit, and that kind of says it all.

We’re at the juncture of Black Butte and the Middle Fork of the Eel River, a far corner of a protected and remote swathe of the simple life called Round Valley.

This phone is getting old, but it still shows how blue the sky is.

We’re in the shadow of the Mendocino National Forest, recently the site of a huge wildfire. You can see where the charring and scarring stop at the top of the hill right across the street. A huge sign in front of the store thanks the firefighters in letters over a foot high.

Everyone here is REALLY fond of the fire service now.

 There’s very little cell signal (neither JC nor I get phone-joy), only a few radio stations come through at all, and the only wifi is at the store run by the campground owners, a 5 minute walk from the site. This is a huge bonus: the low levels of EM radiation are letting me cope with the stress and the dietary compromises perfectly well. 

Good for neurons and what they control.

I even drank half a soda yesterday, and hardly felt a thing… In other times and other places, I’d have paid for that for 3 days. At least.

The grill (closed on Wednesdays) serves fresh local natural beef and incredible salads. Really good greens with just enough dressing and the lovely smokey meat of your choice. The convenience store is pretty small, but the coolers are packed with everything from coconut water through Naked juice to conventional sodas all the way to the rankest beer you’d hate to find.

They’re perfectly happy to make me a gluten-free sandwich wrapped in that lovely lettuce.

You can’t see the sandwich, which covered the whole plate, cuz I ate it.

On our first night, the full moon rose directly over our feet, waking us both out of our first doze to stare at the radiant spot on the tent wall in bleary wonder for at least a minute, wondering who turned on such a damn great light at that hour.  JC finally stuck his head out and told me what it was, and we both had to laugh.

The air is absolutely pure. Each evening, the spotless sunset gets punctuated by exactly one contrail, a screaming streak of orange across a melting sky of peach, green and sixteen shades of blue.

Since the moon rises later and smaller every day (and as we get caught up on our rest, able to stay up past dark!), last night we got a full hour of gazing at the Milky Way and the million million stars I never get to see.

Photo collage: TwTunes at www.digitalsky.com

Casseiopea and the Big Dipper wheeled overhead with a-a-all their lovely autumn cohorts, as familiar and ever-present as old friends.

At the time of our visit, there was a breathtaking piece on show from local artist (and Santa  Cruz transplant) Lynn Zachreson. The link goes to her web page but, of course, online photos can’t do justice to her brush control, delicate textural discrimination, or authoritative use of color. Look her up; it’s worth it.

There’s a gorgeous swimming hole a few minutes’ walk up the pike, sinking deep around great boulders of white chalcedony. Healthy-sized fish nibble your legs if you hold still long enough, and the water is perfect on one of these bakingly hot afternoons.

The water is a lot bluer once you’re in.

JC says the weather can change in a minute here (this old New Englander reserves judgement) but we’ve had a glorious run of unseasonably hot, clear weather with deliciously cool, clear nights.

This illness is hugely responsive to nutrition, air quality, and man-made radiation. In most far-flung places, the produce is dodgy and tends to look (and taste) second-hand; you can’t get good food and good air waves without a lot of advance planning and a huge cooler.

This place was a total find, and for those of you who really care about things like air, food and EM smog, it doesn’t get much better than this. Especially at these prices.

It’s absolutely outstanding.

And you can bring your horses! There’s a black and a bay here who’ve kept us endlessly amused.

Being around JC has always knocked back my pain and increased my strength since we first met, before we ever thought of getting together. He’s obviously got his own electrical field or something. Between his company and the clear and deliciously benevolent environment here, I’m stronger after a few days than I’ve been in some weeks.

I’d thought of this as a side-trip to squeeze in, before I got on with my serious healing junket… but it’s looking like an ideal start, instead. I wound up landing on my feet, and I am grateful.

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Into hot water.. then cold water.. then hot..

This is a bit odd and I haven’t heard anyone else with CRPS trying it, so I’m just tossing it out to show how weird things can be…

I’m cold intolerant. Absolutely can’t handle it. My body locks up and the pain goes all-body and through the roof.

Can’t take too much heat either; makes me weak and foggy, and can trigger POTS symptoms (in my case, that’s mostly nausea, bloating, dizziness, weakness, lethargy.)

My body temp drops so much when I sleep that I’m cold to the touch. A housemate woke me once when she touched me affectionately as I slept, then found I was so cold that she shook me awake — she wanted to be sure I wasn’t dying. That’s how cold I was.

My first massage therapist, a good friend of mine, insisted I try the hot/cold plunges at Harbin Hot Springs, which happen to be 47 F and 118 F.


I told him that was completely insane and did I need to explain dysautonomia again?

He kept at it, and I finally went there for a few days. I was in bad shape, one of those times when I think I’m not going to live for long because there’s so much that’s so wrong and there’s so little energy left. So there wasn’t much to lose, as far as I was concerned…

At least it’s not an ugly place.

Took two and a half days to work up to it, starting with cool bath/dry sauna, working up to going between intermediate baths, dipping in the really hot for moments, splashing arms then trunk with cold. Eventually I could go for the full plunge. I did 2 full exchanges, and was all right. In fact, I was pretty good. Felt crisp, not chewed.

I went back later and did at least 5 or 6 more (I lost count, truthfully.) By then, I could FEEL my hands and feet as I couldn’t remember having felt them before: exactly where and what and how they were — which was, keenly alive.

I had no pain, no pain anywhere at all, everything was the right color — only a much better shade than I’d seen in years, and my head felt as sparkly as a diamond.

I don’t like to sound over the top, but it was such a feeling of absolute, perfect, poised and healthy ecstasy that words simply fail in the face of that experience.

Being totally pain-free makes us CRPSers high, but this was more than that. Everything worked, from the tiniest microvessel to the least drop of chemical messenger. My cells sang with the bouyant joy of it.

I copyrighted this image… kinda cool. Think I’ll use it as a logo.

I went out to the main pool, actually enjoying the cold roughness of the path on my unharmed feet, and drifted into the “quiet zone”, that is, the temperate pool. Although it’s not etiquette to contact strangers there, an awful lot of people turned to look at me and smile the sweetest smiles. I can only imagine how radiantly happy I looked. I felt that I was glowing brightly enough to light the whole space.

According to my online research, there aren’t many hot springs that have contrast baths at all, let alone to that extreme degree. If they do, they’re awfully coy about it…

I have hopes of a particular roadside hot spring at Yellowstone National Park that runs into a chilly stream. In winter, which it nearly is, that could be worth trying, though it would take a bit of effort.

I’m not sure how slippery it is, what the currents are like, or what sort of work is involved to get from hot to cold. I do have to be mindful of physical damage, until I can really find that cure I’m convinced is just around some corner on my winding path.

We shall see what comes up. I know this is something to add to the repertoire, one of the ingredients to combine into a cure, or something like it.

One more piece of the puzzle… a twitchy, morphing, complex, incredibly irritating puzzle, but one I’m rather stuck with until further notice.

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One for the money, two for the show…

I suddenly got tired of waiting.

I do this: churn up a great idea, spin possibilities, lay in lots of groundwork, get cold feet, get reinspired, hammer down some details, fall apart completely, then say “oh the heck with it, who needs drama, let’s stop dithering and get this done” — and off we go. (Editorial “we” there.)

I’ve gotten nearly all the stuff that I need — vehicle, bedding, cooler, and a power inverter to charge the laptop with.

I’m making a custom map on Google Maps with airports from the halfway point on (in case I need to fly out to make my next doctor’s appointment), campgrounds and national parks along the way, and increments of no more than four hours of driving per day — aiming for one hour at a time, with lots of long breaks.

There is flex built into this that lets me stop for a couple of days when necessary, to rest and reboot. Some days I might drive only two hours, or one. I got my ticket on Southwest so I can change it for free. It’s all progress.

I’m driving across the temperate zone during harvest season, so getting my produce is less of an issue than it would be at any other time.

I’m fed up with the mess in my car so that’s great motivation to thin out and repack.

I found a wonderful site called http://www.reserveamerica.com/ which includes national parks, state parks, and KOA, among others. And there’s always Motel 6 for backup, if I really need walls and a door.

And I’m wondering why I’d delay getting better. I’m off to combine the healing factors I’ve looked into and spend enough time on them to make a lasting difference.

Or not.

In any case, it’s time to try. At least it will leave me in better shape for the winter — always the worst, hardest, bleakest time. Maybe this one will be better..

Let’s find out.

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Remembering and re-membering

I’ve been doing intensive massage and craniosacral therapy for the past few weeks. I’m reminded, of course, that the neurological system extends throughout: bodies have memories. (There is some confusion about how those memories are stored. We’ll figure it out eventually.)

This, in turn, reminds me that the brain is malleable. CRPS changed it,

and if I’m thorough enough, persistent enough, and clever enough, I might be able to change it again.

Persuading the brain to remap itself is a remarkable process, because the brain uses the language of vision and metaphor and it responds most strongly to longing and fear. (This is one reason why mythology is so helpful, given the right story: myths tend to have powerful visual metaphors and visceral emotional force.)

The brain is also a monument to inertia: once it has started going down a certain path, it’s very hard indeed to persuade it to change course. I find I have to be firm, focused, and relentless, and since I also have CRPS-related ADD and periods of unbelievable vacuousness, that’s tricky… (I’m working on how to construct a webpage that has all my tricks and routines easily accessible, so I don’t have to remember what to do when my memory is at its worst. It’s a heck of a design problem.)

One good way to access the central nervous system (CNS) in a way that specifically rebalances some of the most critical areas of the autonomic nervous system (ANS) is through bodywork, like therapeutic massage and craniosacral therapy (these link to my providers — both warmly recommended.) Here are a few of the reasons why.

  • Humans, and other mammals, are hardwired to respond deeply to touch. The “safe touch” of good bodywork is profoundly soothing to the ANS, and since the ANS drives the multi-system dysregulation of chronic CRPS, this is a powerful thing.
  • The rocking motions of massage stimulate the parasympathetic nervous system, which has a lasting calming effect.
  • It releases endorphins, which reduces pain and brightens mood.
  • The tissue stimulation improves and stabilizes blood pressure and circulation, major factors with CRPS and dysautonomia.
  • Swelling goes down, as circulation is mobilized.
  • Hyperesthesia (pain to light touch) and allodynia (blunted sense of touch) improve because of something that clinicians call “desensitization”, a hostile sounding word which really means, “developing appropriate sensation.”
  • Hormones stabilize, perhaps due to the improved circulation and more stable ANS.
  • More stable hormones improve mood, reduce pain, and stabilize immune and inflammatory responses.

Therapeutic bodywork does all that. There is no pill or surgery in the world that can come close. Once I get my links sorted out, I’ll rewrite that for the medical blog. The value of good bodywork simply can’t be overstated.

A couple of weeks ago, during several treatments in a row, I had the curious sensation that my right arm and shoulder were being knitted back into my body. I hadn’t realized until then just how completely I had succeeded in shutting them out.

The still, quiet voice inside me indicated that dissociation should be intentional, purposeful, and temporary; if I wanted to be well, it could not be habitual. My inward guidance wasn’t telling me to stop dissociating (that is, mentally and emotionally separating myself from that part of my body), but to do so only when I needed to, to separate from too much pain.

Remaining dissociated is like disowning that part of my body, and I can’t persuade it to do anything when I’ve essentially cut it off. I need to persuade it to heal, and that’s a tall order.

During today’s craniosacral treatment (from the delightful and competent Sonja Sweeney), I remembered standing on the wall of my French-bed corner garden a few years ago, right before I fell off it and smashed my tailbone on the edge of a ramp. Pathetic lavender and dying weeds filled most of the bed, since I hadn’t gotten far with digging it up. Behind the glorious, fragrant, massive rosemary against the back edge, a 20-year-old growth of climbing roses spilled green and pink everywhere.

I had just completed a course of treatment that put my insides in the best shape they’d been in years. My stomach no longer bothered me, I was healthier and stronger, my stamina was better, and I was still inside the five-year mark with RSD.

What’s interesting is that, during this treatment, I was remembering the moment right before I got injured, not right after. My eyes were filled with roses and my nose with rosemary, and I was sketching out great plans for my bit of garden.

As I walked away after my treatment, that quiet inward voice said, “Remember pre-injury, not post injury. Remember that.”

It had to start with the rosy garden, because before the CRPS injury, I was working at Borland and was so involved with my work (which I loved) that I really had no idea how magnificently fit my body was, by the time I got injured. I simply didn’t notice it.

I enjoyed the activities of riding to work and running miles through the redwoods, but when I thought of my body, it was to criticize function, appearance, or both. (Except occasionally when I noticed those legs… :-))

In the rosy garden, I was aware of being better. And that was the point.

My brain needs something to reach for that has inward meaning and emotional oomph, so vague dissatisfaction is not a helpful point of reference. A sturdy inward “YES” is the goal: re-remembering this body, with all attached limbs fully integrated, blood coursing warmly throughout, everything moving and working, and that radiant feeling of blooming health and returning vigor.

I’m 46. I don’t expect feel the way I did when I was 34. But I know 60-year-olds who could kick the ass of me at 34. Being well is not an unreasonable idea, keeping in mind that I’m going forward, not back.

I’m inventing a frame of mind that doesn’t exist yet. Both remembering and re-membering give me important clues as to what it should be. I’m delighted to have figured that out.

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The mighty steed (maybe)

As some of you know, I have it in mind to travel around the country, in a vehicle I can stand to use for more than an hour a day, and interview fellow CRPSers who know more than I do. If we pool our knowledge effectively, I’m absolutely certain that we can point the way to a cure, so this is by way of being the most important work of my life.

The output of these interviews is going to go under an umbrella project, a 501(c)(3) we’re putting together, called “CRPS: Art & Spirit” – but that’s another blog.

I’ve been car-less for a long time, which is tough in this country. After the usual research and footwork, I wound up buying a  Toyota Highlander, 2005, less than 80,000 miles on the odometer, a tad over budget. It looked good (and, with deep red coloring, is the perfect visual for this disease), it felt fantastic… But I noticed the engine hadn’t been fully serviced. It’s been in the shop for two days now. It’s supposed to be ready.

What started in a sweet blaze of optimism is going sour as the time comes closer to put my signature on paper. (We closed the deal after hours.) I had to call for an update to find out the car was ready; now it turns out my insurance company is one they don’t like the flavor of; and it turns out, with additional tone of voice, that I’m supposed to make an appointment to do the paperwork.

Excuse me? At a car dealership, I need to make an appointment for paperwork?

This does not bode well. I suspect distraction. I’ve already asked for a copy of the documentation on the work that was done.

… So here’s the thing.

I’m a nice, middle-aged, former RN… with a devastating, incurable and painful disease… with (I’m happy to say) a growing readership… using this vehicle as a tool to work for the greater good.

And documenting the entire process.

Is this a person anybody would really want to deal badly with?

I’m pretty sure the answer is no. But we shall see how this goes. I’ll keep you posted.

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