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:

• Warrior, eh? (End-of-year retrospective)
• Not even anger is wasted 
• Whiplash... but the good kind
• Just enough
• Think zebra
• Imp-possible
• Vocation and purpose
• Re-learning how to drive
• Tern to the present
• After the burn
• Quantum physics and the divine plan
• Remembering and re-membering
• I intend

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....

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.

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 ;-)

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.

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.