CRPS, or Complex Regional Pain Syndrome (Type 1), is a change in the nervous system that's usually triggered by a very painful episode. The bad kinds affect the brain, nerves, muscles, skin, metabolism, circulation, and fight-or-flight response. Lucky me; that's what I've got. ... But life is still inherently good (or I don't know when to quit; either way) and, good or not, life still goes on.

Monday, December 31, 2012

Any such thing as "just another day"?

At the end of last year, I had the pleasure of writing exactly the kind of end-of-year post I'd always wanted to: Pleasant without being dull, reflective without being melancholy, whimsical without being trivial, and, of course, linking back to blog posts marking turning points in the year.

I took that week to reflect, which was appropriate. It had been, for me, a year of great inward shifts, starting from the inevitable, flattening despair of the massive practical and intangible losses this disease brings, to a new awareness of possibilities that I had discovered, fought for, or created out of whole cloth. It was probably the year that this blogging voice really took shape.

This year is quite a bit different. I've been technically homeless for most of it, catching up with friends I hadn't seen in far too long, and looking for a rational way and reasonable place to set up my post-poverty life. (Oh well.)
 Despite my plans, I haven't had much time for reflection these past few weeks. Physical survival in the form of an income and affordable home were taken care of... but then the survival issue became much more personal, and at the same time, even further beyond my control as my nervous system took off without me.

Despite all that work, all that expense, all that hope of 2012… Nothing is assured. There is more to manage, but less I feel I can hang onto.

Admittedly, this isn't my cheeriest post ever. Be assured that my determination remains unmoved.

With it, that F-U imp still holds the back of two fingers up to anything – or anyone – that thinks to squash me.

This date is an accident of history. The end of the year has even less reason to land on this day, of all days, than the last cycle of the Mayan calendar had to land a few days ago.

Our calendar is only loosely tied to anything but mental habit -- and centuries of political pressure.

But it does us humans good to have a chance to pause and reflect, think about how we define ourselves, how we adapt, how we react, how we think, notice what we're grateful for, what we cherish and want to keep.

As for me, that's now too obvious to bear speaking of.

I will not die.  
I have work to do
I love, and am loved, more than my pitiful mind can encompass.

It's more than enough to keep me going!

Whatever we call this day, it's one more in the middle of an adventure beyond imagining...
 Adventures tend to be damned uncomfortable things, as Bilbo Baggins was not the first to assert; but they make good material. As a writer, I get something out of that. If it's a form of insanity, at least it's an adaptive one.

Come with me on the journey. I always appreciate the company.


Links to blog entries:

Optimism has its place, but...

I'm a bit tired of the message, "It'll be okay if you think happy thoughts" or "it can't be as bad as all that."

Tell you what, let's trade bodies and lives for 7 days, and if you're still alive at the end of it, we'll talk....

Sunday, December 30, 2012

Something like rest

I thought I would get laundry done today, but I'm still too shaky. I got a good walk in, and finally set up voicemail on my "dummy" phone.

I'm trying to think outside the box with the shattered remnants of my brain. My next doctor appointment is in February, and I expect to be in an intensive 2-month program for March and April. I do need a reasonable place to land, although there's no knowing if I'll get a permanent home here.

A package arrived for me up north, forwarded from my mailing address in Massachusetts: a present, several cards, and one or two letters. J, with controlled pain, asked where he should send it all. At this affirmation of distance, I broke down in tears. Once I could speak, I asked him to hold it until I got back. He said, "I like that."

This forced separation is for the birds, but I'm certain he is fine without me, and that I can't go back yet.

We went to a great deal of trouble to find a nice place to be, and it was far better than we dared to hope for. My feelings at being driven from it are beyond words.
All right, so it's a little idealized here...

His brother made it into town last night... but then J's car broke down at the airport, and he was improperly ticketed... Fortunately, he has AAA Plus and got towed most of the way home for free, and could afford the rest of the trip to the shop. The kindly, dog-loving, competent woman tow truck driver got the car safely stashed and took them all safely home afterwards. How cool is that?
Tow truck drivers can be really cool.
He's enjoying the visit, though it's bittersweet. He says it might be for the last time; this brother does not take care of himself, and his next trip will be to go stay with his daughter in another state, where he can get checked out by a whole stable of medicos.

Mortality sucks.

I've noticed, though, that J's voice is stronger and brighter and deeper (a delicious combination!) so I think it's doing him a ton of good to have someone around who reminds him of being the capable older brother. He was in the upper third of a brood of 9, and it seems he had a real gift for getting things done and making everyone like it… As long as there was an element of mischief involved.

Surprised? :-) I'm certainly not. He has the gift of getting others to play. He thinks he's a lone wolf, but wolves choose their leaders according to who can get everyone to play well together...

There are so many layers of person there, that, even at this distance, and under this strain, he continues to unfold in my eyes. I don't know what the future holds, but I believe he's in it somehow.

Saturday, December 29, 2012

A bit of flow

All in all, a successful day, by rational markers...
  • Two huge problems taken care of at long distance (the combination of phone and internet is a wonderful thing). 
  •  J has a brother with him now, a good-hearted dude who totally has his back. Just the kind of person I want him to be seen with around town! 
  • I saw properties in, and did a reasonable checkout of, the nearest town covered by Craig's List and within any version of my budget. 
It didn't result in housing, but it did result in info and a certain amount of clarity...

Benefits: more than one color among its inhabitants, both middle-class and poor people, all the usual stores, houses reasonably recent and reasonably well-constructed (by California standards.)

Drawbacks: the classes are strictly segregated, and the gates and walls shut the poorer people IN. That's just a bad sign... All the stores are big box; I think I saw one non-chain store in my whole tour. A town with shallow roots.

Fun bit: A scam claiming that a house worth $1400/mo is posted on craigslist as being rented at $550/mo; my email query got a fulsome reply from a "pediatrician" (who can't even spell the word) who just moved to Florida, and might possibly go to Texas next, don't worry, just fill out all this personal, identifying info and send the money and he'll FedEx the key...
And if you believe that....
I  checked out the house, called the number on the sign, had a lovely chat with the receptionist for the real-life management company, and forwarded the email after informing her that a thoroughgoing scam like that really is a police matter. (It was at least the third call.)

Unfortunately, the bogus price was the only one I could really afford...

Given the way my credit got trashed by my descent into destitution a few years ago, and the problem with sublets (and therefore getting a roommate), I think this will take a lot of footwork.

I've always, always paid my rent. My bills go,
  1. Rent
  2. Warmth
  3. Phone
  4. Food
  5. Everything else
But try proving that, in an economy that means houses and harbors get bought and sold every time you turn around, and housing managers and harbormasters get moved and downsized even more often than retail clerks.

Which brings us to the next thing. I spoke of being out of the flow, nothing feeling right. Well, that seems to be shifting -- all things being subject to change without notice, and not assuming I'm right or anything. But there is a blossoming of hope and possibility, and whatever brings it, I am truly grateful.

I have the thundering inward message to spend at least the next 18 hours on self-care. No running around until I have done so. No house-hunting until further notice.

This is painfully hard because I'm spending a lot per night (for me) and I want every day to be worth what I spend on it. That's a bogus, above-the-neck, able-ist thing to say, though. I have to damn well take care of myself. Otherwise there is no worth, no day, no useful activity.

I got enough food for a couple days, detergent for dishes and laundry, and need nothing more that I can't get within a short walk in this reasonable neighborhood from my safe, upper-story room.

Time to take care. There are far worse things!

with a tip of the hat to Zorba the Greek ;-)

Friday, December 28, 2012

A day, still in life

Today was good: sent a care package to J, did some research, and plotted out a town to look at homes in. Tomorrow is a big day: lots of househunting.

Still struggling with the feeling of being off the rails completely but there is so much to do that it almost seems irrelevant. Two completely different dramas are unfolding which aren't mine to discuss, but this blog post is going to be a lot shorter than I'd intended so I can get back on the phone.

Meanwhile, I'm hoping for a lack of interference in the hunt for a safe home. That's all I ask....

Thursday, December 27, 2012

An upside down day

Today was a day when everything seemed to turn at least one somersault, including my mind. In fact, I just took off the headset and turned one myself, to complete the set.

Extreme stress makes me a little whimsical…

Food & housing

I woke up this morning in a motel that was as creepy as it was the night before, when the desk clerk had looked up and down at sweet, white, worried me, and said in her most reassuring tones, "I'll give you the room on the second floor, on the corner, right where I can see you."

On the one hand, I was glad there was someone to look out for me. On the other, it was horrifying that it was so baldly necessary. A bit like my relationship lately.

Today was the last day of intestinal meltdown before heading into real wasting syndrome: relentless nausea, episodes of dizziness, and nearly volcanic indigestion. The next step is relentless diarrhea. I've had wasting syndrome once this year already, and that was enough.
The automatic drive is about to go in reverse...
Time to put more money into staving off physical self-destruction: I called a good hotel with monthly rates, and made a 30 day reservation.

The indigestion is considerably better, and at least I can eat past the nausea. Success! I WILL save this system!



I finally had a good, real conversation with boyfriend J this evening. For all our mutual problems, there's a lot of love there. This separation is agony for both of us.

I finally got to say what I have been tripping over all day: nothing feels right. I usually have a strong sense of flow, of what should happen next and how to get there. But it's as if I got washed up on the riverbank weeks ago, and however hard I try, I can't catch up with the current. I'm more lost than I have ever been.

Being away from my sweetie, and pouring so much money I really need elsewhere into the painful boondoggle of a separate life, is lonely and brutal.
So I have some thinking to do...

Monday, December 24, 2012

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.

Friday, December 21, 2012

Poem: From the silence

Chaos of terror and battering storms of emotion
Bashing the hull and ripping at the rigging --
Can't tell: is water pouring over outside
Or pouring in inside?
So much it's hard to say.
Will something come loose?
What sail could hold against this?
What rudder keep on?
Doesn't matter.... It doesn't matter. These are the ones I have.


The soul breathes regardless.
I remember that the answers come in the silence.
Step outside the storm, though it goes on without me
Feeling it, but outside, on the hull, not inside, not in me.
This vessel holds.

So I pause, heart whole or heart breaking,
and hold the silence
until I need to speak; and
if I speak from the silence,
then can answers come.

Monday, December 10, 2012

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!

Saturday, December 1, 2012

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.

Saturday, November 24, 2012

Handling my hinges

I had a day off from driving around. After wonderfully quiet morning, I took a walk to the nearest park, half a mile away. The mistletoe was going like gangbusters:


It was shocking to realize how much the tendons in front of my hips had shortened. I had to use a bit of the washing-machine action through the hips, to get a stride more than a couple feet long.

That's way too hard on the cartilage, so once the washing machine warmed me up enough to stretch without injury, I stretched enough to let me take a tolerable stride without grinding my knees.

There's only so much my tendons will release, in one careful stretching period. There's quite a bit of work ahead of me.

I really haven't been taking position seriously enough: spending so much time driving is not just hard on the torso (which I have managed with better success) but it's hard on everywhere you bend, especially when your body sucks at bouncing back.

Short tendons in the front of the hip pull your lower back out of alignment, dragging on the front of the spine. This is terrible, as anybody who has ever had the least little bit of low-back trouble can tell you.

The way CRPS makes your tissues less resilient means that a few good stretches will not do what they used to do, back in my 20s and 30s, when 10 min. of dedicated work would put me right back in trim. Like most athletic young adults, I had no idea how good I had it… :-)

Taking care of my hinges now has to be part of my daily routine. Especially since the driving isn't over yet. Stretching five or six times a day, like I do my neck, which I'm still losing ground on; walking absolutely every day, or at least six days out of seven. At least it will buy me time, until I come up with something more definitive.

I fight hard to keep CRPS out of my legs in terms of circulation and sensation. Not interested in losing them to any kind of laziness!

Thursday, November 22, 2012

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.

Tuesday, November 20, 2012

It's good to know your limits

Turns out that two and a half weeks is my absolute limit for sleeping in a different place every night.

I think that's quite reasonable.

Saturday, November 17, 2012

Made it!

Sacramento. In exactly the same number of pieces as we started out in.

I've learned a lot on this trip about travelling with CRPS. I have a lot to digest -- and a great deal of paperwork to complete for the larger project. 

The next few days, we're going to spend taking care of JC's concerns for a change.

Then there's a historically corrupt holiday which is widely celebrated (including by me) as an excuse to spend quality time with family of the heart.

Then we shall see what my brain makes of all this, after a chance to mull and recuperate.

Meanwhile, I've gotten used to blogging more often. There's something to be said for it.

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.

Friday, November 16, 2012

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:

View Larger Map

Thursday, November 15, 2012

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.

Wednesday, November 14, 2012

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.

3-D landscape at last!

Both of us are breathing easier within sight of hills and trees.

My third blender in a month might not make it. However, it's gotten me 3 days' worth of kale-berry shakes, and combined with J's pain-reducing presence and sharing the driving, I'm in significantly better shape than I was a few days ago.

Tuesday, November 13, 2012

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.

Monday, November 12, 2012

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.

Sunday, November 11, 2012

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.

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 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 minutes until most of the chlorine dissipates. 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.
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Nearly all motels have washcloths with a nice scrubby texture.
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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 the 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. 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. 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 it a brief demonstration. That seems to help.

My calves take a little extra care. I always start on the left, and it feels like a hunk of plastic. I tell it to calm down – in firm, maternal yet authoritarian 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.
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This is a sidebar note, but it's relevant… When I was studying up on Dr. S. V. Ramachandran's work on mirror therapy and lens therapy for people with amputations and other limb pain problems, what impressed me most was the plasticity of the brain. With enough persistence, and a persuasive enough message, the brain can be 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.
There are several ways to do this, including lenses (optical input is very powerful in the brain) and forms of retraining, such as meditation – and the exertion of parental authority over your own being.

Speaking to my body in tones of loving maternal authority, I find, is remarkably persuasive.
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Eventually, my left calf loses that awful dense feeling and starts to feel like a leg again. Then I coach it 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.

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 one hand or two, bouf them against the bone, and jostle them around. You can mobilize quite a lot of tissue with very little effort, if you use a washcloth in the bath.

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 mobilizing.) I go back to my knees a couple of times, where the main issue 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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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.

Saturday, November 10, 2012

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.

Friday, November 9, 2012

A good day

Tired beyond belief but made it to Greenville, Illinois. I'm going to take a nap before doing anything further, and if it lasts until tomorrow, so be it. The epsom bath can wait for a change.
I'm in an EconoLodge paying far too little for an airplane hangar with two queen sized' twin' beds. And not a trace of mildew.

Thursday, November 8, 2012

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?

Wednesday, November 7, 2012

I'll take it and be grateful

I'm happy to say that it has been an otherwise fairly uneventful day. I'll have to repair the male connector that activates Oliphaunt's tail-lights, but it's taped up and will do until I'm somewhere warmer and hurting less.

Heading South was a good move. It was bitterly cold on I-80. It's getting more bearable every 50 miles.

I've discovered that not only stopping every hour and stretching, but running in place for a few minutes -- until my whole body starts getting warm -- really makes a difference. 

Exercise not only improves circulation and oxygenation, it helps stabilize the autonomic nervous system. This is my substitute for a 20 minute walk at every break, which is rarely realistic at highway rest stops.

I got 4 hours of driving time today, which was my target amount. Considering I'm in hard recovery from the previous 36 hours, that's pretty good!

Well away from Pennsylvania's peculiarly slimy water, here in roaring downtown Ashland, Ohio (you can blink without missing it, but don't blink twice, or you might),  I'm curled up in a rather luscious little Super 8. (I did say my needs are simple...)

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The bath overflow is halfway up the tub, leaving a depth suitable for a footsoak. I tied a couple of loosely folded tissues into the plastic bag they leave in the ice bucket, stuffed it into the overflow gap, and it blocked it completely.

I put about a pound and a half (~3 kg) of epsom salt into the bath, and had a looooovely warm bath. My spine and hips and legs and arms are sooooooo much happier now, and I can bear to be inside my left leg. The thought of doing it again tomorrow is bearable, and that's all I ask.

My sweetie is safe and well, my last lovely hostess's internet is up and running, and I am warm and at rest. Life is good.

I'm awake now

After an obnoxious 4am pop, not surprising after a cortisol-saturated day like yesterday, I dozed until 7 when I could persuade my body to take consciousness seriously.

Thinking in terms of an early start. It was great. Then I tried to move.

So I spent a little over an hour on qi gong, stretching, and PT exercises. Much better.

I used my hot pot to make tea and my self-important Oster blender to make my shake, not with kale but frozen spinach, a soft mutzu apple and slushy blueberries.

It burned out the blender.

When I tried to take a picture of the really impressive clouds of smoke, my phone declared it needed updating. I took it as a cue to move forward rather than stand there gawping.

But I needed to get it off my chest. The scary negative crap can stop any time now.

Tuesday, November 6, 2012

"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.

Monday, November 5, 2012

Not what I expected today

I got bitten by a deer tick right before leaving Massachusetts.

Lyme disease is, of course, something CRPSers are susceptible to, so I took it seriously, especially when the head popped off when we tried to remove it.

A two-tone rash quickly rose and fell with much hot salt water, but it rose again last night and I woke up this morning feeling glandular.

I found an urgent care clinic, called to make sure they take Medicare, and put it on my list of errands on my way out of Scarsdale. I returned one thing, picked up another, stopped at Trader Joe's to pick up lots of kefir to help with the antibiotic impact, and pulled over at an AT&T shop because my newly-activated Galaxy S3 phone wasn't behaving well -- and wasn't surfing at all.
(Mine is white.)

Two hours and a great deal of work later, I walked out with a phone I now know is not as unlocked as Negri Electronics said it was (it will soon be available on eBay, once I know what carrier it can use) and a brand new Galaxy S3.

The very capable and helpful young lady who got me sorted out gave me a tip that is probably worth what I've lost on the phone: Never buy anything that matters from a company that doesn't have a customer service phone number on their web site.

What a simple, brilliant filter. No customer service phone number = no interest in staffing for customer service. Do you want any problems dealt with in a rational manner, or not?

The good news is, these phones are so hot I probably won't lose all that much on my original purchase price.

Then I went to the address of the clinic, according to Google Maps, and there was no clinic there. In fact, nobody at the Family Center had any idea about it. I  should have taken the secretary up on her offer to give me directions, if only to check the address...

I wanted to cross the Tappan Zee Bridge (yes, those of you from anywhere else, that's the right name) before the construction started tonight. So I did a search for hotels and motels on the other side.

They're all full, probably with hurricane refugees, and the least expensive room I could find was double what I have budgeted for a single night's lodging. Most of them were quadruple that.

It was getting below 40 degrees Fahrenheit and very dark. I called my hostess and turned back to Scarsdale.

Safe, warm and fed, this is beginning to look less awful.

It really brings home to me the pointlessness of taking plans too seriously. The linear approach has only ever yielded average results for me, at best; I can only excel in a more seat-of-the-pants kind of way.

It's hard to accept, because it's -- wow -- really, really difficult to start something when you have absolutely no idea what the finish might be, and are necessarily vague about even the next step.

The blind leap is exceptionally challenging, especially with a hotwired fight-or-flight response thanks to dysautonomia.
Try it blindfolded, with live wires stuck in your brain...

But I did get down that birth canal all those years ago, and that was the quintessential one-way leap into the void.

After that, any other trip oughta be a piece of cake. Right? Even if you have to start it twice.

Saturday, November 3, 2012

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.

Monday, October 22, 2012

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 :-)