Think zebra

This title has two meanings:

  • Medical students are often told, “When you hear hooves, think horse, not zebra.” This means that a set of symptoms is probably due to a common cause, not an uncommon one. Zebras are rare.
  • There was a popular book about chronic stress and fear that pointed out that, when prey animals like antelope or zebras are attacked, they get really upset; as soon as the attack is over and the predator is gone, they chill right out again. It suggested reacting like the zebra; respond fast, then relax when the threat is gone.
Zebra face
I have a rare disease — a real zebra.

One of its many effects is to hair-trigger my fear, because of the disruption of the autonomic nervous system that regulates the fight-or-flight response and everything that comes with it.

My bf and I are dealing with a crazy ex. It’s an unpleasant experience for anyone, but truly trippy for a former ER nurse (talk about comfortable under stress) who now has a CNS hotwired for the fight-or-flight response. I keep blinking to check whose life this is, anyway.

In between the bouts of crisis management, I’m doing my very best to “think zebra”, do a logical assessment, and chill right out again. One must function, after all.

The daffiness of CRPS-brain (especially one that has been overtaxed with a long trip and multiple moves) means that things I need to do occur to me bit by bit, not in a tidy list. However, I do make lists, and have the backup of good friends with relevant experience: I follow their advice promptly and to the letter.

All that’s left to do is keep on with my mental disciplines: meditation, contemplation, qi gong, and prayer. Studies show it works, though they’re vague as to why. Doesn’t matter what format or religion you meditate or pray in, as long as it’s sincere.

Makes perfect sense in quantum physics — but medicine is stuck in the 1600’s, with the radiant Sir Isaac and classical physics. Maybe it’ll catch up one day.

Meanwhile, here’s a zebra. Time to meditate and pray, then stop and chew grass.

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Whiplash…but the good kind

We now have a cute li’l trailer, sufficient to our simple needs:

 

I lived on a sailboat for years, and J is a camper from way back, so we think it’s about right. I can hear some of you gasping and a few saying, in slightly strained tones, “Well, if you’re sure…”

It’ll do for now.

We paid too much for its years, but about enough for its general condition. It’s clean and tight and, with a few electrical personality issues not surprising in something 30 years old, is in very good shape inside. That is, the cushions, cupboards, furnace and water-heater are excellent!

The trick is finding a place to put it.

We look weird on housing apps.

This is new territory for us.

My nursing and writing/software resumes were irresistible, or so I assume, since I hardly had to look for jobs; they’d just as often come looking for me. J’s carpentry work is second to none, as his rate of re-hire attests. Too bad so much of it was in Mendo, where people change their phones like normal people change their underwear.

Work aside, I’m highly mobile (always have been, except when disease really slaps me down) and J is moving out of a region of the country which, in my view, is a total pit. Among other things, anybody who looks Native American (as J does) looks like a punching bag to the local thugs, uniformed and otherwise.

And, since we’re both now a little daffy, it’s not like we have the routines nailed down. As J says, “We put our two screwy brains together, and we’ve got one pretty good one.”

Still, I’ve always paid my rent on time, even in the worst of times; and J has survived 62 years as a neatly made, brown, feisty dude of less than average height. Persistence is key, in housing as in chronic disease. He is certain something will come soon. Meanwhile, we keep doing the rounds.

***

No sooner had I entered and saved the above then, on J’s advice, I called the manager of the mobile home park we wanted to buy a home in, just to ask if he might have anything…

He had one RV spot left.

It’s huge, has already been dug over and gardened in, backs onto a creek, has good neighbors and a manager who likes us, and it’s in budget (just). He took to us so much, he’s trusting us to move in Wednesday and do paperwork when I’m back the following Monday.

On our previous visit, I gave him a jug of real old-fashioned maple syrup from his old home and mine in rural New England. That might have made us more memorable.

Img from this intriguing article: http://www.ishs.org/news/?p=1588

My well-honed reflex is to wait for the other shoe to come flying out of the dark and whack me upside the head.

My determination is to be profoundly grateful, a good citizen, and maybe re-learn how to relax…

Meanwhile, I’m  off to see my new doctor in LA

I’m leaving tomorrow on a 2-day trek down. I’ll stop for a visit with relatives, giving J free rein on getting us plugged in, set up and organized. He’s going to enjoy that!

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The Car Quest: the Grail is ours

My sweetie is between homes (long story) and, thanks to a few runarounds from shops that should know better,  between cars. That’s one reason he was free to come out and  help me drive across. We had a wonderful time and got our communication styles well in train, so it was a useful trip in many ways. But, on our return to Central California, it was time to face the more humdrum realities.

The first item on JC’s agenda was sorting out transport. First we had to decide whether it was sending good money after bad to continue trying to resurrect his old one (and here, as an honest reporter, I have to put in a very good word for Thurston Toyota‘s Service Dept, managed by Rod, who pulled strings and called in favors and pulled off some minor miracles to help us out).

In the end, he had to pull the plug on his faithful steed. He decided to go straight for his dream car: a VW Passat wagon, V6 with heated seats and leather interior, mileage under 100k, ~10 years old or less … for around $4k.

You realize that doesn’t exist, right?

After a particularly slimy salesman, many hours of driving, and sniffing out a lot of dead ends …

Incidentally, if you find yourself in Stockton and you’re hungry, consider hitting the Creamery at 5756 Pacific Ave #3. There was some confusion about my order, and it didn’t help that I had mentioned gluten allergy but not made a loud, firm pronouncement. The waitress was absolutely angelic, sweetly insisting on taking everything back and bringing something that I could eat, and would want to; and the kitchen turned my revised order around in record time. I expected a Chili’s type of meal — decent but unremarkable — but it was better than the price led me to expect. If I’m ever stuck in Stockton again, I’ll remember it.

Where was I? Oh right, used car salesmen and dead ends…

I called a number in a town I’d never heard of and found myself talking to a sweet young man who was describing JC’s dream car — and wishing he could make it better.

For real.

And then he knocked 15% off the asking price just because he was sooo glad to talk to a nice person after a busy morning of Craigslist trolls.

So 6 hours away from home (but 3 from where we were in Sacramento), we found his dream car, with a lovely young family of the warm and hard-working kind that you can’t help but be glad to give your money to.

We made it back to Clear Lake with breaks at the loveliest places JC has sussed out over the years. He gently scolds me for being too trusting and keeps an eye on the sketchier characters at the gas stations and — I just noticed this — slides up to me when he thinks they’re looking too hard. I’ve never been with someone so protective and mindful. 

JC says it takes the two of our screwy brains to make one, and then we come out pretty good.

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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.

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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.

View CRPS – Art & Spirit: renew, refine, research, revise in a larger map
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.

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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.

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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.

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Re-learning how to drive

I’m either half a day ahead of schedule or half a day behind, and I’m honestly not sure which. It’s roughly another 5 days to Denver, and with my sweetie’s troubles slowly and expensively resolving, it’s probably best not to try to rush, but to let things unfold.

Mind you, an hour’s reiki this morning might be helping me think that way.

Badly as I want to be there already, snuggled up to him and brainstorming, here I am …

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Between Richmond and Centerville, Indiana.

My room has a fog of mildew which stopped me on entering, but I paid before asking to see the room, so I’m stuck. I can’t remember where the AC power cord is for the car’s air filter, though I may have tossed it in a burst of mindless efficiency before leaving.

The window is wide open while I do laundry on the other side of town, so we’ll see if that makes enough difference. If I wake up brain-dead, I’m sure you’ll hear about it.

Despite good energy and good progress, I decided to reef it in and stop early tonight — largely because I’m out of long-sleeved shirts, and needed to save arm-time for dealing with that.

I stopped here, precisely, because I had mail forwarded here to me at General Delivery — a system that actually seems to work. It included my permanent Massachusetts driver’s  license (which might be handy after the temporary one expires) and a really lovely card from one of the really lovely people I’ve met on this trip. A wonderful cherry on top of a rather good day.

It occurred to me that I haven’t discussed  my accommodative strategies much. Here are a few things I’ve done, redone, and learned on the way:

Grabbing the wheel

Those of you who know CRPS well know that vibration is absolute hell, and a steering wheel is a big vibrating thing that’s made to press against the weakest, most pain-frazzled tendons in my entire body. So that had to be dealt with.

I’ve learned, from all my adventures with tools when I lived on the boat, that no amount of padding will make up for harsh hardware.  So buying a vehicle with the lowest possible level of wheel-vibration in the first place was a major consideration.

My car, Henrietta, is a Toyota truck:


… but it’s built on a Camry base:

This means it has a much more forgiving frame than trucks and truck-mounted SUVs (though it can still tow 5,000 pounds!) and it handles the road very gracefully.

I’ve learned through many years of athletics that gel provides the cushioning my body likes best. So that was the next thing to go on:

That’s extra-thick gel-padded bicycle wrap on the steering wheel.

(And, incidentally, that’s the driving grip I use half the time. Holding the cover, rather than the wheel, nearly eliminates vibration altogether, and it’s very easy to grab the wheel if I need to dodge.)

Years of nursing and my own experiences with increasingly, um… responsive skin have made me a HUGE fan of good wool. It breathes even when wet, pads even when squashed, and if you keep your eyes open, you can find wholesale prices on new sheepskin (– and get sturdy sweaters of cashmere, merino, or alpaca for $5-10 at the right Goodwill stores, but that’s another post.)

In Massachussetts, I live near the Sheepskin Outpost on the Mohawk Trail, and I lucked into a sale there. That got me:

– The steering wheel cover, to provide more padding and keep my hands off hot rubber;

– The seatbelt cover, to keep the edge of the belt off me and keep the skin on my shoulder and chest aired;

– The seat covers, which I wound up getting for half of wholesale, because they’d just bought the stock of a company that went out of business and had more inventory than they could afford to store.


Boy, did that ever work out for me!

Covering my can

This is about traveling with disability, so here’s some physical reality.

I started megadeath antibiotics a few days ago, and the first symptoms are making themselves felt. Kefir just isn’t enough to save my skin.

My very favorite brand. I’m getting nothing for saying so, but I’d like that to change 🙂

Also, I’ve really been having trouble getting the circulation in my left leg to behave.

Today, in the middle of my day, I had a brainstorm that would minimize the reduction of circulation to my legs and maximize airflow to my antibiotic-ravaged sit-down.

I swapped my underpants for my white silk long-john bottoms instead, and decided I could just wash out the silk each evening and hang-dry it overnight. Besides, the extra layer kept the chill from cutting into my leg every time I opened the door.

Tonight at 6:22 pm, my left leg is feeling better than it did at 2:22 pm, when I made the switch — despite a couple of hours in the car and far too little activity. Who knew such a little bit of material could make such a difference?

And I’m happy and relieved to say that the parts my undies have to cover are doing better, too. I had no idea that white silk was so healthful.

No more elastic around these legs. It’s too bad, because I’d just stocked up on undies. But of course, I got them on sale. It could have been worse.

Gratuitous toilet humor…

I stopped in a gas station that had the kind of bathroom I grew up thinking of as a gas station bathroom. It’s not chair-accessible (in fact, there’s hardly room for a standing person to turn around in) and the tile might be original with the building.

However, in a totally novel approach to graffiti, this gas station found a new use for the wrongest possible shade of brown paint:

There’s really nothing to add, is there?
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"Plan" is a 4-letter word

Last night, in an effort to give my autonomic nervous system a chance to calm down, I turned off my lovely hostess’s wifi while I slept. Eventually, I did sleep, after several hours of meditation.

Why the insomnia?

People change with time. My sweetie is discovering that in the harshest way. A friend of 20 years is sinking into the pit of addiction and her transformation has put him at considerable risk, due to the company she now keeps and what they think of him.

I hadn’t heard from him since midday yesterday, and since we had agreed to call twice more that day for different logistical reasons, not being able to get hold of him was deeply worrying.

I followed my inner prompting to head away from the coast (where another storm is heading in, this one bitterly cold) and get to Cleveland, with the option of flying out from there to get to California to do whatever was needed for my sweetie.

I took off at 9:30 (woefully early for me) after plugging the router back in and forgetting my jacket — which my lovely hostess chased me down to my parking spot to return.

Worth a thousand words

Dr. Goyal and White Plains Urgent Care were a small parking lot and two buildings over from where my nav device had placed them yesterday. /sigh/

She was saddened and intrigued by CRPS, making notes in the margins of my sheet.  She was initially somewhat dismissive of my description of the bite, because this morning it was being coy, hardly red at all.

I said, “I knew I should have taken pictures. Let me draw you a picture.”

Despite my having explained its vacilating nature clearly, I know from long experience that they need to see it to believe it.

So, using the big white paper sheet they have you sit on, I sketched the bite when I first noticed it, half a day later, a day after that, and so on. I wound up drawing a series of concentric circle patterns, growing, then shrinking, then growing, then shrinking.

I finished by drawing an arrow from top to bottom and saying, “Would you trust that pattern? Because I wouldn’t.”

I walked out with a prescription for 3 weeks of doxycycline and having promised to follow up with my CRPS specialist.

I know it’ll take 3-6 months just to get my insides back into any kind of order. Could take up to a year. I had a bad feeling about this bite, so I’ll consider it time well spent.

 When people talk about Mercury Retrograde, this is what they mean

 While I was in there, my lovely hostess texted me: “Internet still not working – what to do?” An hour (and a lot of non-Mac behavior from her Mac) later, my best answer was, “Call the cable company; it’s a hardware problem.”

Doing unsuccessful telephone tech support for one dear friend behind you, for a problem you might have caused, while driving at highway speeds on strange roads, when you’re sick with worry over another dear friend ahead of you, is not something I would recommend. In fact, now that I can check it off my bucket list, I think I’ll try not to do it ever again.

Her life depends on the internet even more than mine. It’s not optional. I wanted to whip around and ride back to save the day … but for the lashing in my brain to go on, and the fact that her hands work better than mine and I know the interfaces by heart, so there was nothing — in practical terms — that my presence would have added.

I had a fierce feeling that, if I could get far enough away from the tangled vibes behind me, both of these problems would resolve themselves.

So, with solid logic on one side of me, and crystal-clear intuition on the other, I charged ahead.

I crossed the New Jersey/New York state line. Then my lovely hostess texted me to say that she had found a second loose connection — and that the internet was now working fine.

How to search for someone who’s gone missing

I crossed into Pennsylvania. I’d been stopping every hour to stretch and breathe, but I couldn’t stop mulling my sweetie’s situation, so I pulled over to start the legwork of searching.

Here’s the drill. The order varies depending on what you think the situation is, but, when someone has gone missing and you fear the worst, I find it’s very soothing to rule out the worst as soon as you can bear to:

– Contact the police in the area you last knew them to be in. (Use the non-emergency number; the goodwill is worth the effort.) Have they had any dealings with that person? Car accident, fight, anything? One of the first things cops do is ask for ID, whether it’s appropriate or not, so they’re likely to have records of even minor events.
– The police can connect you to the morgue. Rule out the worst, breathe a sigh of relief, and move on.
– Call the hospitals.
– If they aren’t admitted to the hospital, ask for the Emergency Room admissions, which may be a different number.

If all of those turn up negative, count your blessings and wait for them to get back into signal range or to realize they let their phone’s battery die.

First, I surfed the police logs to see if anything was reported. If there was any violence, then it’s a small enough town to turn up on the online blotter. Nothing matched.

I mulled whether it was worth calling the non-emergency number to see if they’d had any other dealings, and I decided to go straight on to calling the hospitals, on the grounds that any police involvement in the situation would be blotter-worthy.

Then the phone rang.

And it was him.

I really think there were gouts of steam poufing out of my ears. My eyes closed and I dropped against the door, so I’m guessing, but it felt like it.

He was slightly shaken, but intact, and maybe beginning to really “get it” about how some people change.

He told me emphatically to be careful who I trust, not to pick up hitch-hikers, and be careful who I talked to.

Naturally, I promised him that I would.

Just for the record, I have really great friends who always have my back to the best of their ability. I am one lucky human, and I know it.

Kylertown, PA (don’t blink… No, really,  don’t blink, or you’ll totally miss it)

After sorting out some logistics and stopping for a quarter of hot roasted chicken (definitely a local bird — tasty!) I came to the sinking realization that Motel 6 doesn’t go along I-80, and I can’t afford the ones that do.

Garmin is no help, because they just list the upper scale lodgings. Lots of B&Bs, but no cheap little roadside doss-houses.

I don’t need much, and can afford slightly less. It can be a problem.

I stabbed “Kwik-Fill Motel” on my phone’s map. What the heck, truckers know a thing or two about cheap dossing.

I spoke to a woman, which was reassuring; when I blew past the exit (# 133, if you’re curious, and it’s right after a wooded curve) she did a swell sales-job that convinced me to drive the 10 miles to the next exit and come back… and it turned out to be a good decision. 

This place has been in business since the 1970’s and has only raised its prices $10 since then. It skips the kitsch, thank goodness. My decent-sized room has the tasteful modicum of furniture with classy Colonial lines, with just the occasional bit of ’70’s carpentry or carpeting peeking around the edges. Decoration and color schemes are quite tasteful, for a motel, and — most importantly — the heater works.

A total find.

Next time you want to come to the wilds of Western Pennsylvania, you might as well plan an overnight at the Kwik-Fill; you can’t do any better, but you could do a great deal worse.

The only downside is, I wasn’t prepared for Pennsylvania water. I’d intended to bring a case of bottled for PA, but it was just like I didn’t have time this morning.

I’m going to run the bath and the fan, and give the whole thing time to clear the copious chlorine. If it doesn’t smell bad after that, I’ll have a nice bath at the end of this roller-coaster day. If it does, well, I’ll let it go and be grateful for the rest.

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