Metabolic moon dance

My digestion is not happy.

Between the stress of househunting (and the way that forces us into other families’ dreadful dramas), some really egregious motels, and too many things hanging fire for too long…

Plus taking that spirochete-assassinating, gut-grating antibiotic doxycycline for three weeks (19 days, actually; those last four pills, I almost vomited just looking at them)…

With a bit too much pain and dysautonomia for a little too long…

Amidst, of course, the infinitely complex metabolic moon dance of CRPS…

In consensus reality,
this is a shot of my old marina’s night lights…
but it’s a great visual metaphor for the body events of CRPS. Fling!
Image c.2008

… Well, things have been better.

They could be a great deal worse, but really, they could be rather better.

I haven’t been able to keep up my kale shakes, because the indigestion is too energy-sappingly unpleasant. My sweetie made a remark the other day that gave me a clue I want to pursue: don’t mix fruits and vegetables.

I used to know that.

I’m going to try berries with kefir and nut butter as the morning shake, and kale with avocado, cabbage and broth in the evening. (And, for the record, I’ve reconfirmed that organic berries are a lot less nauseating in this hotwired system.)

This assumes, of course, that I can get all the ingredients… Handle the blender… Have a place to plug it in… And somewhere to rinse it out afterwards… In the midst of homeless upheaval and chaos… Twice a day.

Editorial comment is useless. There are times when my natural wryness is wholly inadequate to real life.

I’ll let you know how it goes.

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Oliphaunt, the Thule Frog

Those of you on the central coast of California know that tule fog is what comes in when it’s hot inland and cool on the ocean. If you live there long enough, you can’t keep saying “fog” so — especially if your housemate is whimsical — you wind up using “frog” as a euphemism when it’s froggy out.

I couldn’t possibly get all my clothing, tech, and kitchenry into Henrietta and still leave room for a sleeping Isy, and a rooftop carrier would kill the mileage and my arms, so I had to come up with an alternative…

I stopped at ProLine in Wallingford, CT since they sell this, which is a cargo carrier with 3 features I really need: an accessible height, plenty of space, and a swing-arm so I don’t have to fight with the box to get to the back of the car.

It turns out that Stowaway ships direct from their warehouse on the other coast, but they had a slightly smaller Thule carrier. I asked to look at it to see if it would suffice. I thought it would, after measuring and peering and playing with the lid a bit…

Then it turned out they didn’t have the swing-arm version… but as he said so, I saw wheels starting to turn. Rather than dashing off, I explained a bit about why I needed it (“my hands don’t work so well; I can’t handle the Transporter’s drop-down hinge”) and stated rather baldly that, without the swingarm, I was screwed.

He said he might have the swingarm itself from a Thule Terrapin (which they discontinued for some silly reason.) He thought there was a spare one lying around somewhere, for some reason, and if the holes lined up…

There was.

And the holes lined up.

And it wound up costing less than my Plan A.

And, bless his heart, he got out a drill, put the whole thing together for me, and popped the monster into place.

Its gaping mouth… its long leggy swing… its sheer enormity…

Meet Oliphaunt, the Thule Frog:

The answer to my prayers.

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Different souls, one world

I’m intrigued by how different the characteristic of integrity looks on different people.

My car’s detailing is being supervised by a very Catholic chaplain who really doesn’t lie, really does respect others, really does care about his world, and really does put his time, life and energy into working for the greater good. He’s pleasant and charming in a comfortable way, and his whole demeanor is slightly aglow. He’s a man on a mission, and it’s one that coheres with his best innermost self.

Obviously, what comes next is about the general perception of certain groups — not individual or local impressions, but the wider impression that history, actions/consequences, and the publicity about them, have left in the public mind…

The Catholic church isn’t known these days for turning out coherent, stable, disciplined characters, so it’s really good to meet one.

Lutheranism isn’t known for sweetness, and one of my uncles is both a devout Lutheran and one of the most kindly, gentle, nonjudgmental people I’ve ever met. It really works for him.

Atheism isn’t known for consideration, yet this culture of argument which so often defines itself in terms of opposition has turned out some of the most resolutely practical, inspiring and embracing activist-philosophers of any creed in this age.

It’s possible to go on for some time, but let’s take a moment to realize that all belief systems look a little odd from the outside, despite the fact that living a belief system is a seriously powerful thing to do. It’s one of the great ironies of humanity.

I suspect it’s a clue: it matters on the inside, but shouldn’t matter on the outside. Being responsible to our own internal structure (respecting our own uniqueness) makes sense, but trying to push our framework onto others (disrespecting the uniqueness of others) does not.

Decency and moral stature don’t belong to any one belief, but they do belong to the human race. Each of us is at least as different in our inmost selves as we are in our outward lives. When you think about it, it would be impossible — bizarre and irrational — for us all to believe the same way.

Anyone who finds a path — whether well-defined or idiosyncratic — that gives them, in their uniqueness, real strength and purpose holds a great gift and a powerful tool.

I no longer fear the differences of belief and it’s been a long time since I held any in contempt, but I’ve taken a step back to simply admire and appreciate them, filled with joy tinged with awe.

We are an astoundingly diverse species, inside and out. Such an abundance of different ways to be should make us fitter than ever to handle anything. When we enjoy and admire our variety, rather than fretting over it, I’ve noticed that that’s exactly what happens: together, we can handle anything.

After we had done the paperwork, this chaplain and I continued our conversation and I wound up telling him about the purpose of this trip, the reason I was dropping scarce money on prepping my car.

As I did so, I felt my own coherence of integrity coming into focus, the energetic union of innermost self and outer reality.

And I realized: I’m on a mission. Regardless of my own outcome, I’m certain now of leaving the world better for my feeble but determined efforts.

This radiant chaplain is going to pray for me and my work. The science shows that prayer and meditation correlate to better outcomes, regardless of the forms used. To bring the science back to life and into specifics, I know that the prayers of someone so coherently devout are powerful help.

I’m a handicapped woman on a mission which is technically impossible. But now, I do have a prayer 🙂

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Peripatetic Stealth Gimp

Last week, I was in California, doing good and necessary things.

This week, I’m in Massachusetts, doing different necessary things.

I have to find a doctor in LA (long story) and soon will have to be there.

Meanwhile, I’m tired of being this sick and am determined to interview some patients and practitioners, make the time to put together what I’ve learned, and see what progress I can make against an impossible illness; this will probably, though not certainly, put me back in northern California for a bit.

I have a cat waiting for me in LA, a friend waiting for me in San Antonio, a family waiting for me in Vancouver, and the home of my bones in the Berkshires.

It’s very quantum: I can be sure of where I am or where I’m going, but not both.

CRPS, though, I intend to sort out.

My lovely Henrietta is going to get a double coat of wax this week. It’s nearly the last thing to do before I can — carefully, slowly, gently, mindfully, in short bursts, with at least an hour each of meditation and exercise every day — begin the long drive.

I just hope the gas prices go down. I’m going to be traveling for awhile.

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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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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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Trapeze act

I’m preparing to start off on a cross-country odyssey to interview certain people who have CRPS and manage it particularly well, and incidentally hit some hot springs and massage methods along the way, since that (besides nutrition) seems to have the biggest effect on me.

Let me restate that. I’m about to move my simple little life (the whole suitcase) and complex little body (11 bottles of twice-daily pills &  supplements, dietary requirements that would make an allergist blench, and let’s not think about the wildly variable pain, confusion or autonomia) into a rather pretty vehicle and make my way across the entire continent (probably in increments of one hour at a time), to meet a bunch of strangers (my inner introvert is screaming), some of whom I’ll try to draw out about some very personal issues (my inner Miss Manners has the fantods), all by myself (at a time of epic mysogyny and rising crime.)

And I still intend to have my Brain Food Shakes and a cup of hot tea, first thing, every morning.

After I had a meltdown on the table today, my craniosacral therapist remarked that it’s like I’m reaching for a trapeze: I’m leaping off of the highest platform and, if I get the trajectory just right, I’ll be fine… but there’s an awful lot of the world that isn’t the trapeze bar, and it’s hard not to be hypnotized by the massive potential for disaster.

But how can I not go?

I won’t get many side trips, but I get to wrap my arms around people I’ve known online for years. We get to talk about what matters most in life: living off the steel core of the spirit, finding integrity in Hell, what it means to love and be loved.

The staggering physical beauty of Turtle Island is mine to explore, only this time on a reasonable schedule and without any cranky, arrogant pyschopaths (other than myself, of course) for company.

If I’m very lucky and very very good, I might stumble into the shape of a cure for this awful disease.

How can I not go? Whatever the outcome — really, whatever the outcome, even if it lands me in a nailed box — there is no way I can hold myself back with so much hope and love on the horizon. I’m a sucker for a challenge anyway, but this… turning my back on it would be unbearable.

Of course it’ll be unimaginably hard. Guess what, I have CRPS and I get up every morning. Everything else is decoration. This can be done.

My toes are leaving the platform and I’m reaching as hard as I can. Somehow, I don’t know how, I will make that bar — and swing it like hell. Because there’s something beyond that, too, and I aim to get there.

It’s impossible to be like this and not realize that I may die falling. But what a way to go, eh? I have every intention of surviving (Mom, take note) but the thing to do with what scares me most is to stare it down.

Keep your eyes on this space… The packing is almost done.

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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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EM-hmmmm

Last year, I could tell exactly when the fallout from Japan got here, because my hands and arms swelled up the moment I stepped outside. I could tell which gloves had been left in the rain, because they made my fingertips go numb when I touched them.

Who needs Geiger counters when you’ve got cold chronic CRPS?

So I took off for the summer & went East until September, when the air and sunlight had calmed down quite a bit. However, the entire SF Bay is simply carpeted with wifi, radio, EM, and a whole lot of other stuff in the band that’s so noxious to CRPS — at least, in me … And in almost everyone I know who has CRPS who has taken the time to reflect on what triggers swelling, autonomia and pain.

I had staggering improvements from a trip I got to a hot springs, where I did hot & cold plunges. In all my life, it was the most amazingly recuperative experience that didn’t involve persuading someone else to work on me. That low emotional overhead has a certain appeal, in these dysregulated times. But I do look forward to finding lots of good company along the way.

I’m clearing the boat for sale then taking off on an extended tour of hot springs. I have no idea where it’ll take me, but what a trip! I expect you’ll read quite a lot about van camping, because remember, I’m on Disability and that doesn’t leave much for hotels.

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