False economy

I grew up in the desert… but I didn’t do much driving at the time. If I have an excuse (doubtful) then that’s it.

We were about to blow out of Laughlin, Nevada and passed a Chevron charging $3.75/gal. After a week of gas costing less than $3.50, and knowing for a fact that it was $3.25 across the river, I vetoed JC’s suggestion to tank up before leaving town.

He was thinking about the desert ahead of us; I was thinking about the gas prices behind us.

Our hope of finding gas on the way out of town didn’t pan out. We weren’t worried.

50 miles later, we realized we should have been, and wondered if we might be SOL. I swear I felt my late Dad’s gaze on me with that unmistakeable look telling me I reallly do know better.

JC called out, “Come on, Raven, help us out, brother!”

A mile or two later, an arrangement of plywood (which I’d mistaken for another ruin) caught his eye. He spotted it as a gas station. At that point I was glad to pay $4.98/gal.

Arizona plus one

After a delicious dish of huevos rancheros at Virgie’s, we made it from Gallup, NM to Laughlin, NV in one day, even with a couple of memorable stops…

At the petrified forest in the Painted Desert:

Where JC exchanged formalities with a handsome raven (video coming soon)…

At the Indian Art Center in Winslow, Arizona:

And a brief off-road trip into the woods.

The western third of the state was wonderfully hilly, and at the end of the day, we both had a lot more energy. There’s something to be said for being on terrain that you’re used to.

Blogger ate the prior draft of this entry, which is too bad, but I’m not up to reconstructing it. I’m overdue for my Epsom bath… Here in Laughlin, NV, over one state away from where we woke up this morning:

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New Mexico’s beautiful names

Cimarron, Eagle Nest, Angel Fire, Taos, Chimayo, Santa Fe, Bernalillo, and the mouth-tickling Albuquerque… BEST names of any state yet.

JC checked all the vehicle fluids at the start of the day and is doing my laundry at the end of it.  He shares all costs with me. He keeps an eye on my stuff, likes my car and watches my back. And he actually enjoys driving.

I’m not sure I should get used to this, but I’m certainly grateful to have him around. Plus he’s good company.

It’s been another bad day for autonomia and pain (not helped by a 2am to 4am bout of cortisol-induced insomnia), but my left leg isn’t bad and these beds aren’t bad either, so I’m dosing up on tulsi tea to get through the night and inviting a better physical state tomorrow.

Colorado Springs and the Paleolithic Point

Being part of an interracial couple can be unnerving at times. Last night, we walked into a steakhouse; I sailed in first, as JC had held the door for me like a gentleman. I was confronted by a very long table of very white faces, many of them bearded, all of them looking directly at us.

All of them. Directly. At us.

Not one fork moved.

I fiddled with my jacket zipper for a moment, dithering in the doorway, decidedly nonplussed.

JC took a look around, stepped around me, and sailed in as if he had just bought the place. He twinkled at the waitress, said something jovial to one of the guys at the endless table, chose a booth, and we had a wonderful meal.

He told me later that he cased the men over my shoulder and saw that the biggest of them was very much out of shape. With nothing to worry about, he defaults to playfulness and easy-going charm, which has the effect of drawing any remaining fangs.

I’m learning a lot from this guy.

Today

We noodled around Colorado Springs for a while. We were trying to find a museum which, he was told 20 years ago, would host an extraordinarily valuable archaeological find that he had made.

The museum had moved, with a great website but no address; and according to the website it had shifted its focus to post-World War I, while his find was Paleolithic.

We drove all over Fort Carson looking for the museum, called quite a few different phones with no clue, no answer, or an answering machine, and spoke to any number of very sweet people who had absolutely no idea that anything like a museum ever existed there… a museum that had been built less than 2 years ago — if it exists at all. I’m beginning to think the Mountain Post Historical Whatever exists only in print.

Sigh…

I have a couple of numbers to call, and if those don’t work out, I already have a plan C in place, which involves digging up the now-retired archaeologists in charge of the original excavation. Since his find saved their funding (and at least one doctoral thesis) after four fruitless years, I’m pretty sure somebody will remember.

I have a feeling there’s an interesting story that took place in the 20 years since that item was brought back to the light of day. It was very important to someone very important in his field, but it’s not important to the landlords who ostensibly own the right to it… And, at a market value of ~$10,000 at the time of its finding, that’s not a trivial issue.

It’s not unusual for great finds, like great works of art, to lie moldering in a museum basement because the present curator’s vision doesn’t include them. Even great curators have limits to their vision, and any curator who doesn’t dig Paleolithic craft is somewhat wanting, in my view.

But then, I am a bit of a throwback.

Speaking of being a throwback

We saw the Manitou cave dwellings. We were headed for the Manitou Springs, but I put the wrong thing into the Garmin. I first read about New World cave dwellers when I was five or six, and actually climbing around inside those wonderfully convoluted dwellings was a dream of 40 years’ standing. It was a totally unlooked-for gift.

JC kept saying, “there’s more…” And led me to further outdoor displays… the first floor of the gift shop… the second floor of the gift shop… the museum, with some stunning examples of work… and of course the bathrooms, which he knows I have to get to regularly.

We stopped in Trinidad for the night. The weather has been so odd – and so fraught – that the direct route over the Rockies, via Denver, was a little unnerving to me. Our route will bring us past more painted rock, and even some stunning canyon land. There’ll be a little bit of nostalgia for both of us, and there’s nothing to brighten a trip like telling each other stories.

Logistics

I’ve been doing a lot of thinking about how to conduct long trips. I’m checking some ideas against JC’s horse sense, and will refine them further with my CRPS: Art & Spirit core group.

And then we’ll deal with the reality of funding.

This trip has been immensely valuable from the standpoint of researching how to make this kind of traveling feasible. The answers look nothing like anything I’d envisioned at the beginning, so this was an extremely useful endeavor.

I don’t think we’re in Kansas anymore

We made spanking time:  crossed all of Kansas, made it to Limon, Colorado (and the best ribeye in I can remember), and got our first glimpse of vertical: Pike’s Peak at long range.

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Kansas was unbelievably flat. Not quite as flat as a billiard table, because those are too small to really convey the right impression.  Every now and then, there was a bit of texture — a teeny dell, a couple yards deep; a bit of watering hole; something. I’d stare at it in relief.

Then the landscape went back to flat. Really damn flat. I mean, flat, flat, flat, flat, flat.

Flatter.

The conservatism that’s such a feature of the Midwest makes some sense when you see it. The whole place is so flat (especially Kansas!) that there’s no privacy. You have to plant dozens of trees around your house before you can have any hope of discretion.

With such a constant sense of exposure, doesn’t it make sense that people would edit their own behavior before it can be edited for them? We all behave more carefully when we feel we’re being watched. Around here, it’s hard not to watch anything that isn’t …. flat.

Tomorrow, my sweetie assures me, there will be terrain. Lots of it.

Better

My sweetie got here safely, despite the macramé of transit between there and here.

I spent the day reorganizing the car, throwing away a couple of bags and coming up with some donations for goodwill.

We’re one hour outside of Kansas City, which I drove all the way through from South to North. It’s far and away the most attractive and pleasant-feeling city I’ve seen since Massachusetts.

I love the minarets…

A minaret on  church? Why not? Especially if you gild that lilly…

The fact that gas is only three dollars a gallon doesn’t hurt. One day, I’d be happy to check out the music scene there.

Tomorrow, I get to share the driving! Meanwhile, it’s a quiet evening in good company.

The sheer activity of Epsom salt baths

Taking a day to rest has been just the thing.Now here’s what I mean when I say, “I took an Epsom bath…” And I’m sorry to say that getting images loaded will have to wait for another day, so use your imaginations for now 🙂

Nearly all motels have a bathtub. I consider this essential. They’re small, but adequate. With a swipe of cleanser and a quick rinse, I’ve found all of them usable so far.

I should add that baths are not essential to Epsom treatment for CRPS. Here are a couple of tricks I’ve used, with a degree of success which not only included the targeted limb but also improved CRPS for me generally:

  • I’ve immersed my arms in an Epsom solution in a sink or basin. This is great when I’m not up to a bath, but I’m too chilly to sit around with wet limbs. I lean into the basin, with sleeves all the way up, and slosh and slosh and just soak it up. I’ve found that not only does it help my arms, but the relief goes up through my shoulders, down my back, and even my feet feel better after doing this with my arms for 15 minutes or so, 20 minutes if I can stand there that long.
  • When the dysautonomia is being REALLY bratty, I sit with a basin of Epsom solution and a tea towel nearby, and simply wipe the bothersome limb, stroking from healthy area to painful/spasming/misbehaving area, with the same mental chants I describe below…

Both of these strategies work extremely well. Many of us are accustomed to sink baths, and it’s no harder than that — easier, because rinsing is optional.

Temperature – the first consideration

People with chronic CRPS have two substantial issues that affect bath temperature: wonky signals to the circulatory system, and screwy temperature regulation.

Hot baths are a thing of the past. They aren’t good to me any more.

I like a bath that’s just a few degrees warmer than the temperature that feels like nothing on your skin. That seems to provide the best results.

I find chlorine to be counterproductive, so I let it go first. I run the tub a little hot, with the fan on, and leave the room for 5-10 minutes until most of the chlorine dissipates. (This really works.) Then I adjust the temperature.

MgSO4, my ally

I’ve gone up to using about 2 pounds of Epsom salt for one bath. That’s about a third of the 6 pound bag, costing between $3.50 and $6.50, depending on where you buy them. I used to use a cup or two, but I really get better results with a stronger solution.

The process

Remember, this is about re-regulating and re-normalizing, so leaping into the bath and getting busy is the wrong thing to do!

Going one step at a time and persuading my body to stabilize at each point is how the process works.

So I take a couple minutes to just sink into it, let the mottling pattern on my lower body and arms fade, and get some circulation going to my overworked skin.

I brush over all my limbs with my hands, introducing them to the idea of tactile input, and how that should go. This is an important first step, because the touch of a hand wet with Epsom solution is softer than silk, and it’s important to start with the most positive possible sensations. This helps de-alarm your central nervous system as well as re-acquaint your skin with the world. This is supposed to start, and end, as a definitely positive experience. In between, there might be some work.

When working on such deep and challenging health issues, it’s important to set yourself up for success whenever possible!

Back to our bath.

Nearly all motels have washcloths with a nice scrubby texture. The soft kind that you get in the bath and body store feels to me like turgid gelatin, soaking up a lot of soap and doing very little in the way of exfoliation – which is what I used to use washcloths for.

Now, it’s all about renormalization – or, to use the standard allopathic medical term, desensitization.

Leave it to medicine to make returning to normal sound like something bad!

I start with the soles of my feet. If yours are too sensitive to touch, start where you can touch. Remember, set your body up for success. This second pass distinguishes between contact on the surface and underneath, which are two different sensory realms. The first thing I do is go underneath, to the tissues below the surface of my feet, in a gentle and encouraging way.

I hold the washcloth in my open hand, using a big, squishing gesture.

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With that big gesture, and a certain amount of gentle elbow grease, I reassure the soles of my feet that they’re doing fine. Once they start sending appropriate signals of touch and motion, I work around the foot and up my ankles.

Using the washcloth in one hand, and nothing in the other, I alternate strokes, soothing the frazzled burning sensation left by the terrycloth with the silkiness of Epsom water in my palm. The frazzled sensation eases off gradually.

I don’t just notice what the sensations are from my skin, I tell that part of me what the sensations ought to be:
It’s just terrycloth. There’s no burning here. It’s just terrycloth. It should feel pleasantly scrubby, nothing more.

Every now and then, I move the washcloth to a part of my body that still thinks terrycloth is just terrycloth, and give myself a brief demonstration. That seems to help.

Once the signals start calming down a bit, I can go deeper. My calves take a little extra care. I start on the left, and it feels like a hunk of plastic. I tell it to calm down – in firm, maternal, authoritative tones – and go squish my right calf instead. When my right calf and shin are sending nice, normal signals of terrycloth texture in motion, I go back to my left calf, reassuring it that you can be normal, you know perfectly well what that feels like, there you go, you can do it.

Firm, yet loving, maternal tones are hard to resist. It’s a great re-progamming tool for bringing your brain closer to normal.

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Eventually, my left calf loses that awful dense feeling and starts to feel like a leg again.

The next step is to address the surface sensations on up the rest of me.

I coach my skin not to send sparkling messages of hot and cold where the washcloth goes, but just the sensation of terrycloth rubbing moderately over skin, and that that’s okay and the right thing to do.

I work my way up my legs, paying attention to the major nerve path and the major muscle groups (always with big, squishy gestures, not too challenging, but very tissue-mobilizing.)

I go back to my knees a couple of times, where the main effort is to mobilize the circulation and draw away the swelling.

I work on my low back and hips until the inclination to spasm turns off. I tell them to take it easy, just let go, you’ll know when it’s time to contract, now settle down.

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Then I lean forward to dip my arms and work on them, with somewhat gentler gestures. Since I can’t remember just what normal sensation is there, I look for overall warmth and better mobility in my forearms, with touch signals as close to normal as we can get.

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Part of the idea, obviously, is not only to re-normalize my skin as much as possible, but to improve surface circulation, so that as much magnesium as possible can be taken up by the troubled tissues.

Once I have squishy-massaged my arms from fingertips to collarbones, I do a quick scrubby pass on my back (where I used to get symptoms, and don’t want anymore)…

And then I get the Calgon experience, lying back in a warm bath, feeling alive and remarkably well, with nothing to do but enjoy myself until the water cools.

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Speaking to my brain in a way it can’t ignore

Health professionals dress it up in fancy words, but this is what brain plasticity boils down to: our brains take in messages that are so simple and so primal they slide in below the level of words. The way to push back against that plasticity and make it go the way you want, is to address your brain in ways that are simple, primal, and slide in below the level of words – even if you use words at the time. Even in spoken exchanges, remember, 90% of the communication is nonverbal. This is true when we talk to ourselves, as well as others.

With enough persistence, and a persuasive enough message, the brain can be re-reshaped.

Since so much of CRPS’s maintenance relates to the brain having been reshaped in a distorted way, part of the task is to reshape it into a healthier structure.

Dr. S. V. Ramachandran’s work on mirror therapy and lens therapy for people with amputations and other limb pain problems led the way in brain plasticity work, highlighting the very powerful (and nonverbal) effect of visual input on brain remapping.

There are several other ways to do this, including forms of brain retraining such as hypnosis, biofeedback, meditation, specific and clear visualization of painless movement (which, if done clearly enough, can cause brain activity nearly identical to the real thing) – and, naturally, using tones of parental imperative with your own sensations.

Speaking to my body in tones of loving maternal authority, I find, is remarkably persuasive.

Why I start deep and work my way out

I find that it’s often easier to start with deep tissues and then address the surface issues. It sounds weird, but it’s often easier for me to get past the surface sensations when I’m reaching into the muscle and fascial layers, and then, when the deeper tissues are responsive and the blood is flowing through them again, it’s a lot easier and more productive to work out the surface sensations.

Conversely, if I start with the surface sensations, I may not get far enough to be able to dig in to release and mobilize the deeper tissues. Getting halfway through surface pain leaves my body a lot more sensitive to intrusions than just charging in and starting with the deeper tissues.

On the other hand, there are times when the surface simply has to be dealt with, or there’s no chance of getting to the deeper tissues. My left calf was like that when I first wrote this, though it has improved a lot since then.

YMMV. Each of us is different. That is part of what makes CRPS so interesting, and at the same time so darn hard to treat.

Physical issues

In mobilizing tissue, the washcloth provides traction against my skin, so I hardly have to use any hand strength at all. This is important, because if I had to rely on my grip to get hold of the tissues, this would be totally out of the question.

The water neutralizes a lot of gravity, so it’s easier to control a limb you’re massaging. I can squish the muscles with either one hand or two, boof them against the bone, and jostle them around.

I can mobilize a lot of tissue with very little effort, if I use a washcloth in the bath.

I figure I should spend at least a solid 20 min. in the tub, to absorb as much as possible of the magnesium, the warmth, and the chance to melt all the little knots out of my brain. It’s not a bad prescription. Not bad at all. There is always considerable improvement, and sometimes it makes me feel almost completely well.

Reality check in the pause for breath

With some relief in sight, I can admit that being on the road somewhat underequipped and jnderfunded is really hard. The overnight options, as I learned in Centerville, are fraught with the potential for devastating toxic exposures. Packing and unpacking dvery day is painful and an egregious time sink. The solitude doesnt bother me but the lack of distraction does. The constant, relentless struggle with tbis poor body leaves the words “frustration” and “hovering bitterness” feeling hopelessly inadequate.

I’m supposed to create a budget fod implementi g the CRPS: Art & Spirit projdct. I’m much mord clear about what ig will need to include. Good information to have.

Not much scenery after dark

Usually, or at least so far, I’ve ended each day with some coherent sense of things. Not today!

Perhaps that’s because I spent several hours in the middle of it, struggling with a terrible wireless signal and time sensitive need to book a flight. My sweetie is flying out to meet me and help with the rest of the drive. How cool is that?

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The last-minute logistics have been horrible, but so far, with much persistence and lateral thinking, things are shaking out. Finding a safe place for his dog for a week was probably the most worrisome, but an online search turned up Canine Energetics.

I spoke with the owner, Sean, who struck me as extremely decent, sensible and accommodating. The facilities sounds like dog heaven. I have every faith in her ability to play well with others, and she’ll probably have as good a time as she can away from her human.

I pushed on for an hour past dark, and realized that somehow I’m almost (not quite) a whole day ahead of myself. This means I have time to pull the car apart, make it easier to manage getting what I need, and clear the entire front seat (including the foot well) for another person. Not a trivial task!

I also have a ton of paperwork to catch up on: finding a suitable ISP, nailing down the design for the website, and filing the paperwork for registering “CRPS: Art & Spirit” as a tax-exempt nonprofit. I’ve gotten much-needed logistical help, so at this point, the next tasks are approachable. I’m grateful for all the help I get, and the help I get for this project is more important still. We’re going to have a “gratitude” page, where we can publicly thank those who will let us, for the help they give 🙂

Now, all I need is a web geek who’s reasonably up-to-date on the technology and knows how to design an accessible page. Suggestions…?

Southern Illinois was exquisite. It’s so pretty and so shapely that I can’t wait until Hollywood discovers it as a shooting spot. I knew I couldn’t do justice to the shape of the land, so I cheated:

Somehow, at least along Interstate 70, Missouri isn’t quite as nice, and neither was Indiana. There’s definitely a difference.

Y’know, I feel a lot safer, noodling around by myself, than I did in the coastal Northeast or pretty much anywhere in California. I still keep my word to my sweetie, though: locking all the locks, no hitch-hikers, and — it still cracks me up, but I do it — be careful who I talk to. There’s so much more to human nature than what’s on the surface.

Off for Epsom bath. Incidentally, these are not a “Calgon, take me away!” kind of bath. But I think I’ll talk about that another time.