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….

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…

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.

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.

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!

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.

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!

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.

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.