Category: CRPS knock-on effects

Cold Watershed

Isy / / adaptation, critical thinking, CRPS knock-on effects, home-hunt, imp-possible, radical presence/radical acceptance

In my blogs on getting safe housing, I’ve researched and discussed the following:

  • What aspects of ordinary housing do me in
  • What alternative building techniques could do for me
  • What’s involved in a fresh build, nontox and otherwise
  • What “reno” can really mean for me
  • All within my picayune means.

The last bullet point makes it all increasingly absurd.

In the most recent housing blog, I started getting my head out of that two-digits-to-the-right-of-the-decimal possibility. The  housing market has been creeping up, and this year it’s definitely putting those possibilities out of reach.

It’s time to stop thinking I can go it alone. I clearly can’t — not in any way.

Now, time to start researching in 2 different directions:

  • What’s a reasonable range of cost, given the kinds of houses that are on the market, to acquire a fixer and renovate it to my requirements?
  • How many other people or units could that accommodate, generally?

And  then, given those harder and more realistic numbers, figure out the following:

  • How to get that funded
  • Who’d be interested in funding it
  • A list of good prospective tenants who need safe nontox housing
  • What the contract with the funders would look like (several ways that could go)
  • What the contract with the tenants should look like

Because, as my Dad would have said and my other relatives still do, better keep everything clear and above-board. That’s what contracts are actually supposed to do.

Of course, this contract will have to have contingencies for my incapacity and death as a real possibility. Plan A, the place goes on the market and all investors (including my heirs) get their money back. Plan B could be more interesting. Depends on who shows up for this.

And all of this assumes I can stage-manage all this.

I’m so scared.

Meanwhile, back to packing and health appointments. One foot in front of the other.

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3-4 solid tools for tough times

Isy / / activity, ANS and fight-or-flight, basics, brain care, CRPS knock-on effects, martial & internal arts, radical presence/radical acceptance, reiki/meditation, self-care, what works
(If you’re looking for my housing-search info, go here for the latest with all the tables, and here for the one before that 🙂 )
I’ve often remarked that one of the really SPECIAL things about CRPS is the way it essentially “re-traumatizes” the brain: in many ways, it duplicates what happens to the brain when horrific things happen — car accidents, war, etc.
That’s so not right.
This is why we tend to be a leeeeeetle intense at times, and why those of us who survive it long-term become Jedi masters about managing how we appear to feel and how we manage how we really feel.
A key component, as many of you are well aware, is helping yourself find and develop the tools that let your brain process the endless hurt, integrate useful lessons, and release the bitterness, day by day by day. 
 
This is where a regular inner practice comes in handy. I’m sure there’s something most of y’all have got going, possibly related to CBT or DBT or mindfulness, for anxiety, grounding and self-calming; these are great tools. To strengthen yourself further and create more resiliency, try taking that to the next level in some way.
Here are some tools from my life and from survivor workshops and so forth. Individually, they’re amazing. Together, they’re mutually reinforcing and geometrically powerful. They are:
  • Free writing
  • Journaling (not the same thing at all)
  • Disciplined movement
  • Some kind of meditation
 

A. Free Writing:

1. Set a timer or page-count. If possible, use paper and pen rather than keyboard.
2. Once you start, just keep the pen moving forward, no crossings out or edits, just keep the pen moving forward. 
3. When the timer/page count is done, stop right there. It’s okay to finish the sentence, but stop.
> This does something important, which we don’t really have language for but which is absolutely primitive-brain-supportive, that helps de-sting one’s thoughts and experiences.
> Start as short or long as you think it would be successful to do, and go from there. Time spent doing free-writing is never wasted, but running around and art are good too.
> Walk away and do something physical or practical afterwards.
>> Take at least 2 hours before coming back for another round. The brain needs the integration-rest-time, for this to work.
> If you leave out any of these points, then you’re journalling, which is also great, but it’s a totally different strategy as far as the brain/mind/emotional landscape is concerned.
This technique is particularly useful after school, after a big incident when the feelings have calmed down but the mind is still recovering, or before starting a big project.
 

B. Journaling:

1. Put it outside the head and onto a physical medium.
That’s it.
> Journaling can be written, drawn, painted, danced (if filmed), sculpted, photographed, montaged, whatever. Out of the head and onto/into a physical medium.
> We journal for ourselves alone. The writing, pictures, even the dance footage, are not for showing. They might be shown later, after the period of life has passed, but that’s not the point. More commonly, they lay the groundwork for exponentially better art that’s made later.
> Keep them close, where they can be consulted by the one who did them. Nobody else is involved.
> Journaling exteriorizes and preserves our thoughts/feelings/subjectivity so they get less “gluey” and less scatty and become easier to handle.
> Looking over a period of life’s journals can be a great way to shine a Klieg Light of God on things, and free you up to make great changes quickly.
> It’s compost. Don’t expect it to be sweet or glorious, just let it compost. It pays off over time.
 

C. Disciplined movement

Of any sort: dance (Traditional, hip hop, jazz, modern, square, anything), t’ai chi, yoga, playing drums, gymnastics, long-distance running, group sports (plenty of opportunities for seeing both useful and silly ways to handle conflict), canoeing, sailing, etc.

Big grinning woman in spectacular Hawaiian ceremonial dress dancing with her arms
Photo: Joanna Poe in Honolulu
> This literally helps organize the brain, especially a growing brain, most especially that of an intelligent child.
> It also helps regulate neurotransmitters to a healthier balance.
> The body working under specific direction of the brain is enormously neuro-protective and re-balancing. Nothing else works half as well for the brain, the mind, the feelings, and the immune and digestive systems, as disciplined movement. Its value simply can’t be overstated.

D. Meditation

Of any of several kinds.
It seems most useful to have a couple of different kinds of meditation, so if you’re not up to one, you can do the other, and the benefits are mutually reinforcing.
1. “Still” meditation is mostly based on breathing with attention, and once that gets more natural, there are progressive layers of using attention & breathing to strengthen, stabilize, and regulate inner life and responses to outer events in life.
2. “Standing” and “Moving” meditations are often easier than still meditation when it’s harder to focus. The posture and/or movement provides a way into the meditative state.  Also, it qualifies as “disciplined movement.” Two-fer!
> Different methods of “still” meditation only become interesting once you’re generally pretty comfortable with sitting and breathing, and being able to put your attention on some place in your breathing path and just rest it there. (Feeling the air come in at the tip of your nose. Feel it come down to 2″ above your navel. Or rest your attention on any place in between. I love the feeling of it moving in my lungs, so that’s where I focus. My mom focuses on the tip of her nose. Just pick one and learn to rest your attention there — with a naturally-upwelling calm delight, yum! — while breathing.)
> Set a timer, and respect it — just like with Free Writing. For that period of time, all you have to do is the meditation, of whatever kind. It’s okay if it’s boring. It’s okay if it’s frightening — you’re actually safe and okay, and it’s okay to breathe through the feelings and let the time pass. The timer is your safety net. Remember that it takes about 5 minutes before and after meditating to transition, and that’s okay too.
> “Standing” and “Moving” meditations come in millions of styles and schools. These include yoga (hot, cold, slow, fast, many schools!), t’ai chi, qi gong (thousands of schools), judo (those who engage in judo are referred to as “playing” rather than “fighting” judo — it was my first martial art; surprised?), aikido, Shaolin — in fact, any martial art with a great teacher… and of course these come in styles relevant to the countries in which each particular school originated — Japan, Okinawa (my Dad’s karate style), China, Tibet, India, even France (savate) and Brazil (capoeira)… lots to choose from.
 
I’ve found that most more-detailed techniques of managing and clarifying thoughts, feelings, and decisions are basically variations or elaborations of these 4 core strategies. Play around and find what works for you.
 
I copied this from a comment I wrote on social media. So many of us need reminding, especially me. I’m so frightened and overwhelmed myself, I want to put this info where I can grab it quick.
Off to set a timer and do some t’ai chi.
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Fixing the old, opening doors…and 2 shameless plugs for highly competent friends

Isy / / critical thinking, CRPS knock-on effects, home-hunt, imp-possible, loved ones, money, moving/traveling, radical presence/radical acceptance

What a couple of weeks it has been!

The local police chief failed to take a police report about an identity theft for 4 weeks. This has brought my mortgage process to a screaming halt. For some reason, it takes the local PD another week to generate the hard copy (some of us can just hit Print… In California, they tore off the relevant layer of NCR paper and handed me that. This town has some weird stuff.) I can get the mortgage app back on the road late this week, maybe Friday. /Eyes roll so hard they fall out and dribble across the desk./

You won’t get that full story, because I couldn’t log in for most of it. (Probably just as well.) The mighty Wizard of Interwebbery who has kindly chosen to support my online presence for years, has triumphed over the poisonous Login Lizards who made it impossible for me to post. Steven Radecki, my hat is off to you! And since I don’t wear hats, I had to put one on specially, just to doff!

Shameless plug: When he’s not defeating Login Lizards or whacking hackers, he publishes books at Paper Angel Press  or constructs interweb-homes for lovely, tasteful, intelligent people like my readers at Practical Content. He’s a joy to work with; highly recommended!

So, finally, I can gather my thoughts here – and share an outstanding set of information I’ve learned about low-income, non-toxic housing in this time, in this country, and in this region. I know darn well I’m not the only one interested in this!

Tabulation

Over the past few weeks, I’ve been researching what goes into making a home I could live in. I had to learn a lot about building materials, ordinary building practices, alternatives, brands, and a surprising level of detail – combined with yawning gaps of ignorance – about all of that.

Here is a more colorful version of the table I sent to my Dr., laying out what it is that I react to an ordinary housing, what the reaction looks like, and how long it lasts. The columns on the right indicate how much control I have over this in different environments:

Table_WhatExposuresHurtMe

Here is my high-level, thumbnail sketch of how much it would cost to put up a building with one to one and a half stories, 600 square-foot foundation:

And, last and biggest, here is a link to the Excel spreadsheet I worked up as I was researching the costs for conventional versus non-toxic building which I could get hold of online.

PLEASE NOTE: this is for my planning purposes, not yours! This is not a responsible price guide, it’s me dumping the crap-tastic information I could find online, into another thumbnail sketch I could work from, as I talk to my builders and funders and so forth. In short, this is the third-grade homework that could one day lead to a thesis, but don’t confuse the third-grader with the graduate, okay?

BuildCosting4myNeeds

Of course it looks impressive! – and of course it makes all kinds of sense. I tend to create informational material that does all of that, whether or not it should. Please be very diligent in costing out your own projects with appropriate professional support – but feel free to make use of the search terms, brands, and concepts I’ve mentioned here.

So, here are the results of much thinking and online research. Now, time to do my due diligence: checking my figures against competent local professional experience, filling in the blanks, and otherwise holding these data to the test of reality.

Filling in the blanks

Following through with my due diligence opened up a big fat wriggling bag of boa constrictors.

Intellectually, lifting the lid and finding a muscular tangle underneath is intriguing; these days, I’m not sure I can take shock and surprise anymore! However, this is why we have friends, and why it’s worth the spoon-tastic effort of taking care of relationships. I got hold of an old friend, who’s a longtime builder, a good listener, and who always, always tells it exactly like he sees it.

I find that level of honesty very reassuring. I don’t need people to have soft squishy manners, I need not to have to guess!

As you can see from the tables above, I haven’t priced out several key elements convincingly. I had no idea how much it costs to get electricity in. From the masthead at the road, to inserting power into the house, is probably around $2000. Once inside the house, as long as I don’t have more than 100 A of electrical need, I could probably get that done for $5-8000. This adds a total of $7-$10,000. And then there’s plumbing: one kitchen and one full bath for a small place, probably $8-10,000.

Well and septic are fascinatingly complex examples of geology at play. I heard about one 3rd-generation well builder who could describe, in such detail it’s as if he could see it, exactly where a ledge dropped off, where a granite seam ran, and if you moved your well 3 feet to the right, you’d have a much shorter drill depth. I also realize how breathtakingly rare that is. I don’t even know if the guy is still alive. I do know that the hard-working people who dig a well, or anything else around here, have to get paid for the digging they do, whether or not it means I get what I want.

The geology of the Connecticut River Valley is so complex and interesting that several of the world-class colleges in this area have classes dedicated to just that.

What this means to me is, putting in a new well and septic tank does have the minimum costs I cited, but the maximum costs can be horrific given the wrong geological morphology.

Checking my assumptions like a hockey star

Building is a complex gig. Although it looks like a bunch of hammerheads slamming nails and flexing their measuring tapes, there’s an astounding quantity of math, knowledge, organization, and subtlety that has to be done before, during, and after the build.

I’ve sometimes wondered if certain aspects of the building code were meant to keep costs up and access for the low-income that much harder. However, as Kris Thomson (of Kris Thomson Carpentry) reminded me, “People die for building codes.”

It relates to my apothegm, “there’s always an afterwards”: clever economies made in the design stage wind up exposing people who can’t afford better alternatives to problems that may not be survivable – from toxic exposures, to overwhelming infections, to house fires. This is where someone with Kris’s depth and breadth of intelligence and experience really stands out, for being able to make sense of something as technical as building codes in the context of their history and the social forces that have shaped them over the years.

Get him talking sometime; he’s a natural storyteller with a voracious mind.

The real, head-slamming moment came when, after an hour of listening carefully to my concerns, explaining fully every question I had, and telling me all sorts of things I never knew, this builder turned my thinking upside down with two hard data points:

    • “Building new is absolutely the most expensive thing you can do.”
    • “If you get an existing building, even if you have to strip it to the frame and make structural fixes, you have:
      1. more leeway in nearly every respect;
      2. less than half the moving parts;
      3. smaller pieces to juggle.”

Kris does make a living restoring and renewing old houses, so that’s his familiar territory. Structural work holds no fears for him. It’s good to note that he’s close to other people with horrific sensitivities, and doesn’t take these things lightly.

Old and antique houses are really common here. Europeans have been building for their heirs for well over 300 years in this region, a slice of history that deserves way more than half a sentence.

The point is, although I’m very reluctant to take on too many unknowns, if Kris says stripping and re-fleshing an old house is ultimately as safe for me as building a new one, I have to stop and consider that seriously. He’s not taking my concerns lightly; I can’t possibly take his suggestions lightly.

Revising, so to speak, an old building means that the following are already done, upgradable if they’re not currently up to code:
• Driveway
• Foundation
• Framing
• Roof
• ? Septic system (with at least one already in, even if it needs revising, subterranean features are less of a mystery)
• Electricity and phone (bringing up to code is much easier than creating new)
• Siding, probably
• Flooring, potentially gorgeous old hardwood
• ? Heating system

Once we started enumerating the advantages, I started feeling the pull… That’s a lot to not have to put in!

Having said all that, it’s still true that it’s hard to find a small house. I have to be able to project-manage a larger building (even if it’s really a smaller project)… and then find people to help me occupy it when it’s done.

That’s not a bad thing… I have discovered, over the past year, that if I don’t have other people to remind me that there is a world beyond my skin, life can get really hard to sustain. I’ve had an awful lot of housemates, despite being fundamentally introverted. Mostly, I’ve been extremely lucky.

Options: Good Properties

There are two kinds of properties that would be good to start with:

1. An abandoned project, with driveway, infrastructure, foundation, septic, etc. already in place. (So far, I find all this puts the build out of reach because the projects that get abandoned aren’t nearly as small as mine.)

2. An old house in the country, but nowhere near a floodplain, with, ideally, a solid foundation and frame, and a roof that isn’t too bad. (I probably need more cash down than I actually have to offer, but I’m thinking about that.)
I would gleefully pounce on either one, given the chance.

Flexibility is the key to turning the impossible into the imp-possible.

Next, the Money

This opening-out of possibilities doesn’t change my financial picture, which was rather bleak to begin with. I’m still a long way from having good options in my price point, and I’d be way better off if I could find someone to pool resources with.

A new possibility begins to open up: an investor.

The main difference between Saturday and today is, I can now talk about a property that could yield income.

For the money I didn’t have for a new build with room to share, I could actually rebuild/renovate a larger house that would be classy, safe, and non-toxic, and rent out half or two thirds of it. We already know there’s a roaringly under-served market for safe, non-toxic housing, so… Is there a downside?

I mean, besides coping with landlord issues. Being a landlord is no walk in the park. I don’t imagine that I have any secret formulas for being better at that than anyone else, but I have to say, I have had many many years of learning to be patient, clear, and effective with some of the most difficult people and intransigent situations outside of the current White House.

I didn’t realize that until I said it, but the more I think about it, the more accurate I see it is!

If the agonizing work and discipline of revising an old house doesn’t scare me, and if 20 years of pain disease and 17 years of growing disability (and all the doctors, insurers, fiscal abuse, and casual cruelty that comes with it) haven’t killed me, is there any reason I should quaver or shrink from managing a multi-unit home?

I don’t take it lightly, but it doesn’t seem like that big a deal to me.

So, if anyone wants to go halvsies with me on the cost of fixing up a charming old house, just let me know! I get a safe home, you get relatively safe income. I know a couple of good real-estate lawyers in the area who could write a nice safe contract for all concerned!

Hey, have I got almost everything dialed in here, or what?

Loan Structures

I hope the two letters from my doctors will open up types of loans that would normally be closed to me; namely, construction loans and renovation loans.

  •  If I found that perfect little lot less than 45 min. from my hospital with all that prep work done and in budget, then a construction loan would be fine!
  •  If I found that perfect “cash buyers only” house less than 45 min. from my hospital and in budget, a renovation loan would be terrific!

I know that I qualify for the USDA rural loan of $90,000. Yes, folks, I’m naming figures. It’s possible that I can access about 33% of that in addition, in cash down. This is what I’ve got to work with.

Chances of success, given my financial and chemical limits, are absolutely miniscule. However, they aren’t exactly zero.

A Bigger Reality Check Than Before

Mom, you’ll definitely want to skip this. If you want something to research, maybe find me a freestanding cabin & a kind maid, somewhere safe & warm, an hour from a good hospital, something culturally interesting in the environment, with rent under $300/month?

Everyone else who’s still with me here … I have to keep trying. Fact is, either I find a safe house, or I put my papers in order and give myself about two years before I wind up drooling in a nursing home or stumbling into traffic. I have no good choices.

I do have a Plan G. Move to a cheaper place. Kansas, San Miguel de Allende, Turkey (where I was born), Portugal, Fiji, Cambodia, Croatia, New Mexico — the possibilities are endless. I’ve moved, and traveled, an awful lot. I know that:

  • It takes a year to figure out where to get what I need as easily and reliably as possible.
  • It takes two years to figure out who to trust in my area: shopkeepers, helpers, neighbors, etc.
  • It takes a minimum of 3 years to make friends, and that’s if they’re already kindred spirits… when I was healthy, and could go out and do things like normal people who want to share experiences and get acquainted. With so little functional time (3 hours daily, and dropping) that’s totally unrealistic.

Am I really up to the job of being that lonely, that vulnerable, and work that hard to meet my needs, for that long? And do I really want to leave the one place on this whole earth that really feels like home?

Of course not. If I’m up against the wall, though, I can’t say my absurdly relentless drive towards life won’t push me to it. At least I’d be warmer… It’s June and in the low 40’s F overnight, which is ridiculous. Climate change is a cuss.

I’m too weak to keep doing this half-assed, “not real safe, but not dead yet” thing for much longer. I’ve lost a lot of ground fast. I feel my resiliency is not gone, though, so I believe I could recover appreciably, given the right home environment.

I’m keenly aware that, in most times, and in most of the world as it is now, I’d have died long ago. I know I’m one of the lucky ones. I’ve mentioned some of my friends who’ve died of this disease, some at home, some in hospice, some on the table, and several because they had no safe place to live. I’m silently terrified. Absolutely terrified. But I don’t have time to dwell on that.

Achieving this goal is not the end, but a change in the game. I have larger things to do, once I’m safely homed.

• I’ve had some ideas, based partly on my journey with this housey biz so far, about how to put together an effective, ultimately self-supporting charity to make affordable housing available to the chem-sensitive, even in emergencies. The realtor, builder, and policy wonks I’ve shared it with all love it, and I think it should happen.

• A dear (and brilliant!) old friend helped me rough out an idea about how to make my health-care guidance available to more spoonies more of the time, without hurting myself further. “Your Guide to the Medical Wilderness” probably should exist.

• There are 2 publishers longing for books I’ve pitched. They’re deliciously informative books and I believe they should be written.

Yes, I’m talking about all the do-goody stuff I want to do. It’s not an act: being able to make a difference for the better in this world is what keeps me going. It’s what I am. It’s why I keep going.

I want to keep going.

I hope that what I need can come together in time. The period it took to pull my fractured brain out of its winter hibernation right as the cops fell asleep at the switch has made this even harder and time more of a problem. Well, here we are, got to work with what I have and not what I wanted or aimed for!

Meanwhile, I’m looking into camping solutions for the summer. I love camping. I need nature like others need wifi; I’ve figured out how to smooth out many of the hardships; and I’m serious like a heart attack about saving the last of my resources for making a home. It’s a terrifying prospect, of course — in fact, homelessness terrifies me speechless, even if it is a great excuse to camp.

Fingers, and tent pegs, crossed.

I keep thinking I should revise this, but my eyes are reloading from cache and my brain is done.

Take care of each other; life is too short to be mean. <3

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Decisions, decisions, decisions (this is a triptych)

Isy / / basics, brain plasticity, critical thinking, CRPS knock-on effects, imp-possible, radical presence/radical acceptance, self-care

WordPress has utterly changed their writing UI. Apparently, they felt the need to reinvent text entry… (um… Why???)

I usually hold off on publishing a post until I’ve got the formatting tidied up and the images in. I can’t even figure out how to do that yet. So I’m posting a couple of ragged, really funny-looking articles, because it’s better than not posting at all, and there is SO much to keep up with I don’t want to keep falling behind here.

Back to our regularly scheduled programming…

As I’ve said before, making decisions amidst pain-brain and the neurowackiness of CRPS is not the easiest thing to do.

It takes more effort and time than it used to, but the years have led me to certain strategies that help me make good decisions pretty consistently, even though doing so is such an up-hill task.
[Sysiphus image]

1: Good info about the problem.
The idea of “good info” is key. For health and practical matters, I need my info to be coherent, consistent, reliable, and reasonable. Above all, I need it to reflect reality — in other words, to be true.

Opinions are not info, except when they are.

“Hey, thanks for that totally meaningless sentence, Isy! That’s not confusing at all!”

But seriously — a professional opinion, about something that’s pertinent, does matter. That opinion goes into the data pool.

Personal opinions, which are usually accompanied by logical fallacies[LINK], are not data (except to sociologists and comedians) and will never be useful to me. I can provide my own, if I want them. I’ve got loads of opinions, but they go up on the shelf when I’m culling information.

I need facts, data, professional (or highly-skilled amateur) quality input.

At this point, I’m not always as diligent about that as I think I should be. A large part of this early stage of inquiry is getting a sense of the social and cultural clues. I find it almost impossible to immerse myself in a subject without letting in some of the noise around it. /shrug/ Not perfect yet.

1a: Enough good info

After mulling things for a bit, I find that the lower-quality info annoys me instead of pulling me in, and I seek out more higher-quality info with a better basis in experience or science or whatever the best measure of the field is.

I’m building a mental map of the field, and where I see blank spaces, I try to fill them in with information.

  1. Good information about my options.
    This is where it gets interesting. Because of my significant non-standard needs, which are not so much a matter of taste as of survival (key point there!), I have to put extra time, diligence, and effort into developing a good list of options, because by the time I’ve done a reality check to evaluate my options against my diseases and disabilities, the REAL options available to ME tend to be few — even where most people would have a lot to choose from.

This is one of those occasions where the limits I live with just hit me in the face, and I have to figure out how to deal with a reality most people can’t even wrap their heads around as anything other than a bizarre whimsy or a sign of questionable judgment.

That hurts.

Moving right along here…

  1. Time to digest it

[use nav. tree image to illustrate how I absorb info, so it can be used as needed in any context.]

Reality check #1 — floating trial balloons
This is when I can sound half-cocked, because the decisions are floating around in my brain in about 5 dimensions and don’t readily lend themselves to explanatory words. Action words, yes, but not explanatory ones. So,it sounds like I’m going off half-cocked, when what I’m doing is trying on a decision for size.

My focus is oriented towards implementing my current decision, and of course at the time I always think it’s the Real Plan. If I didn’t, I wouldn’t focus as hard and pay as close attention to what goes on when my decisions meet the outer reality.

At this point, I’ve got the basic decision made, and I’m roughing out how to make it happen.

Because I have a peculiar set of circumstances (in every possible respect, it seems), my decisions are rarely off-the-shelf solutions. Every solution is customized. They have to be, or I suffer, lose brains, and die horribly. Or, at least, things don’t go well. YMMV — my mileage varies all the time.

  1. Digest results and lessons learned
    Just what it says. This is a semi-conscious process that I can feel happening, but doesn’t lend itself well to description. It’s more of the tree-and-grass activity, adjusting and tuning my ideas and understanding all the way down and all the way across and all the way up the related chains of ideas. It takes a lot longer than it used to, but it does happen if I’m patient and let it be.

In time, what I don’t know becomes obvious to me, and what I need to unload just goes.

If, at this point, I’ve got a workable choice, I’m done. Time for the next task.

If not, time to re-assess and re-evaluate.

  1. Seek out more and better info
    At this point, I’m past online research alone; I need to talk to experts. This involves phone calls and meetings and interviews. The face-time may not be free. The mobility may not be easy. I may have to spend more time on the phone than my brain is, er, quite happy with.

This one-to-one contact is a super-effective way for me to get more info out of people than they’re aware that they’re sharing, so if I can afford it — physically and fiscally — I’ll do it.

Naturally, being me (and wanting to get the most out of everyone’s time), I prepare for these conversations. I want to make sure I:

  • Have the vocabulary. I’m not at all afraid to ask for corrections, but it’s essential to have a working vocabulary of the subject and the major professionals involved. An hour or four over a few days of web-reading usually provides enough context for me to get going with.
  • Can show an intelligent interest in them and the subject. They need to know I’m taking them seriously in order for them to take me seriously. An extra 15 minutes on their web site, learning about the people and history behind the industry or company, pays off hugely.
  • Have a clear, specific answer to the question, “What can I do for you?” I need to know what it will look like when I have the answers I’m looking for. That means I need to have a pretty good idea what my questions should be. This is rarely as easy as it sounds. All those orbiting words and ideas have to be beaten into some kind of shape so the question marks bursting out of my head have meaningful sentences in front of them.
  • Have note-taking or recording equipment appropriate to the format of the meeting and my physical and attentional abilities at the time. I need notes. As medical professionals get drilled into our heads, “If it isn’t documented, it didn’t happen.” Plus, I want to make sure I get the data right. The ideas I can process; it’s the facts and figures and new terms I need to preserve.
  • Correct contact info for those I want to talk with. (It’s the little things…)

Since the bulk of my online research has already happened, the online part of this “more and better info” search is largely backward-referring:

  • Reviewing the websites I found most helpful
  • Chasing down data or info that seemed less important then, but deserves attention now
  • Filling in holes I didn’t notice or didn’t care about before, but want to clear up now
  • Going through my Evernote directory, if it’s a subject that needs one, and making sure I have enough info in it that I could go back and reconstruct my reasoning just from my information pool.

The discussions and “interviews” with friends and trusted contacts are important (especially in relation to whether an option matches my needs) but much more casual. A significant exchange can happen in 15 seconds at the deli counter or between gossip and talk about the weather. I can “download” a huge amount of info in these brief, solid exchanges with people who know me well.

Therefore, after a certain (large) amount of data-gathering, thinking, and processing, it’s essential for me to do sanity-checks and get assessments from friends and contacts I trust in that context.

  1. Reality check #2 — feasible plan, with fallbacks
    This is where the adhesive meets the tacky surface. There’s a lot more weight and momentum behind a plan that falls into place after all that thinking and working and studying up and experimenting, and it shows.

At this point, I should know what a successful outcome involves, what the major pitfalls — both generally, and for me particularly — could be and how to avoid or mitigate them, and what the likeliest way to implement the decision successfully should be. I should also have a good idea what “yellow light” and “red light” signals to look for, and what to do if they happen. I should have a good idea what the first round of “gotchas” might be and what to do to avoid them or deal with them. (Later “gotchas” are less likely to be out of the blue, and can be figured out more easily.)

To think it used to be so easy, and lightning quick, before I got sick.

I remember wondering, almost a decade ago, how I could possibly make sound decisions when there was so much that was so uncertain in my mind. The time passed, I kept working on it, and the decisions involved in making a process for decisions evolved into something repeatable and reliable. Phew!

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Controlling my descent

Isy / / activity, adaptation, basics, CRPS knock-on effects, humor, imp-possible, loved ones

Admittedly, this might be one of those posts that I think is wonderfully uplifting and informative and positive and yadda yadda, and normal people have to call a therapist after reading. If it weren’t for my fellow painiacs, and the otherwise-normal people who love me and want to know how things are going, I’d probably have abandoned this years ago.

I started out blogging for myself, because I was driven to; I’ve mostly written it as a “non-scientist’s guide to living constructively with this” for the benefit of painiacs who don’t have my medical and communication background; and I’ve wound up writing purely for others, because I’m (very sweetly) obliged to. My high school English teacher quoted that freedom is choosing your chains, and the obligations of love, mutual care, and friendship are wonderful chains — if that’s not too much of an oxymoron. (Personally, I find the image a bit eye-watering, but different strokes for different folks. I’ll try to remember to think before I choose a metaphor.)

However, that’s not what I sat down to write.

Not long ago[LINK], I was in a tailspin about how to manage winter in this body, which is inevitably a bit tiresome (oh look! A flash of humor!), and looked like being more so than ever this year.

I found an old, simple, eliptical trainer by the side of the road that had a stride as short as mine now is. Huzzah! Got it home, and have been using it to work my way gently out of this exercise intolerance. I’ve gone up from 3 minutes 38 seconds, to 4 minutes 40 seconds! And that only took a month. (Look, another funny :))

I have to stop just at the point where my blood gets going and it just starts to feel warm and wonderful. That’s right, I have to stop before it gets really good. If I don’t, I wind up in a slow-motion collapse onto the sofa or bed, and have to really work at it to keep the usual disciplines of getting a shower and food and toilet trips. Since that means that appointments and groceries may not happen, it’s kind of a big deal.

I assure you, many people live like this.

For me, it’s the cardiovascular activity I have to be careful of. The annoying peripatetic noodling-around of errands and driving don’t wear on those mechanisms (though driving wears hard on my attention and I can do, at most, 3 stops for errands before my brain and spinal relays pack it in for the day.)

As I was flailing through the fog of the past month or so, my entire pelvic girdle (hips, low back, tailbone, all the joints involved) decided to lose their cool. Quite literally. I’d be putting my magic goop on the icy skin over my hips, which most women have, and my hand would go over two wide ribbons of fire over my sacroiliac joints, with zapping spicules at each disk, and great squanching bolsters of “eff you, kid, you are NOT sitting on us” right on my sit-down bones. Not cool at all. (See what I did there?)

Much physical therapy and massage therapy happened. It took awhile, but finally, some stability began to re-emerge. I asked my PT how to keep from getting off-kilter again, and she said, “It could be anything: stepping too hard off a curb, carrying heavy things off-balance. That new car of yours could be a problem.”

Ah, the car. There is a story about the car. And what a story it is! So much of a story, in fact, that it’s going to have to wait for its own blog post. It might be right up there with “Intestinal Fortitude”[LINK] for sheer WTH??? But, luckily, I wound up with a good solid vehicle that mitigates everything about driving that a vehicle could possibly mitigate. Unfortunately, it’s easily 4 inches higher off the groudn than the last one.

Talk about stepping off a curb too hard.

I also thought about the eliptical trainer, which I hadn’t been using very mindfully. I lurched from one foot to the other, and I know my hips were taking a wrenching, but I was too daffy to notice. I just, strangely, couldn’t improve my time. I wonder why!

I remember a PT 11 years ago, in my first Multi-Disciplinary Functional Restoration Program, who worked with all of us to “control your descent,” meaning, don’t just plonk your foot dodwn and crsh the rest of your weight onto it; lay your foot down, roll on in a controlled fashion, and whoa, suddenly life gets a lot better — until you forget. Real built-in motivation, there.

As sometimes happens, I stood there for a moment, staring past my current PT’s left shoulder, feeling the idea burst upon me and wash through all my current struggles: loss of partner, loss of help, added responsibilities in the house and for a cat, aging in winter with a rotten set of diseases, new injuries, etc, etc, etc,

Control my descent.

Don’t lurch onto the next step and come crashing down on it.

Stay mindful of each more; it pays off immediately.

Well, that has helped enormously!

It’s elegant and genteel, two words I never cherished but now find strangely redeeming, to pause and collect both legs before exiting a vehicle, and stepping down gently.

Believe it or not, I don’t have to do everything NONOWNOWNOWNOW. That was a tough nut to crack, but I did it with the hammer of “control my descent.”

I’ve gotten cushions I recommended to a friend with a tailbone injury [LINK?] for myself, and everything I sit in is loads better; I can rest.

As for plopping into chairs, that has gone the way of hopping out of my car; still happens once in awhile, but instantly regretted. I control my descent.

The ice and snow are doing interesting things in the driveway, and it will get dealt with, but since my amazing vehicle doesn’t mind, I have the time to prioritize and deal with it when I can do so properly. (I might get a plow attached… that could pay for itself in a couple of years, given my usual fortune/skill at shopping for bargains and finding friendly neighbors who’ll do things cheaply.) I can control the descent of that resolution.

It’s nice not to be crashing from fire drill to inferno. I’m coming back to myself — the practical, quirky-clever, loving little dingbat that still lives on under all the messes I’ve staggered through over the years.

I like the dry, mechanical nature of the image of “controlling my descent.” It gets quite emotional enough in here, I don’t need to rock the boat any more by trying too hard to push the perkiness; it’s healthier for me to just calm the upheaval. I can’t stop life throwing me up in the air sometimes. However, I can usually do something to control my descent.

Time check: must go, in a controlled and pleasantly mindful ashion, to my next appointment. I will try to remember to insert those links and maybe add some pictures afterwards. Feel free to nudge me… because I know I’m forgetful, and I can ask my friends for help  🙂

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Service animal in training

Isy / / brain care, care team, CRPS knock-on effects, imp-possible, kitten, loved ones, massage/bodywork, perspective, what works

So, here she is: my little fuzzbutt of curiosity, in a mellow moment.

Photo: Laurie B., who’s also an excellent dj.

I told my pain specialist about her, as follows:

She is turning into a service pet already: when I hurt myself, she comes and brushes against it, providing a good sensory input to help me push back against the wa-wa of pain. When I’m upset, she stops what she’s doing and comes over to comfort me, so I don’t go so hard into my body’s “autonomic fuss”: color and vital sign shifts, sudden weakness, persistent nausea, emotional instability and pain, etc. She licks softly on the most numb or paraesthetic bits: my toes and wrists. She’s extremely well-behaved in public, handles being in the carrier pretty well, and is adapting to being on leash.

We’re working on the concept of when it’s time to sleep. Those of you with cats, I heard that sardonic laugh. However, I’m feeling relieved and pleased once again that my training techniques are paying off.

I do two things, which I haven’t read about much:

1. I think about what I’m saying. House pets read emotional and mental states extremely well. Probably because of this, I find that speaking to my fuzzy-butts in plain English, and halting my internal chatter to notice and mean what I say when I speak to them, is extremely effective. “It’s like they understand every word.”

2. Wow. Can’t remember what I was going to say for the second thing. That’s embarrassing. It’s like I have pain brain or something. Just like!

So, anyway…

Last night, she was bouncing off the walls at bedtime. Sigh.

I put on the classical CD I play to let her know it’s time to settle down — twice. (Mstislav Rostropovich and Ytchak Perlman playing something deliciously calming.) Usually, that knocks her right out. Better than Valium. Not that time, though. Did I give her extra vitamins?

As she pinged around my legs, I scooped her up and explained sincerely that it’s time for sleep. She paused briefly, all furry and cuddlesome, then went “nah, but thanks” and squirmed off.

I gave up and trundled off, flared limbs throbbing, head lolling with weariness on my sore neck.

I climbed under the covers, arranged my pillows, read my “bedtime silly” book for 5 minutes, and realized I needed some autogenic-training meditation (those are the ones that include, “your limbs feel heavy and warm”) to get my feet and lower legs to warm up enough.

I ignored the squacking and mooping noises (she has quite a vocabulary) from the next room. My limbs were finally getting warm.

Then Miss Thing popped up, literally, and let me know we were going to sleep now if it killed her. O…kaaaayyy…..

She made deep biscuits, pressing hard but still not using claws, first on my right shoulder, then on my right forearm, then on my left shoulder.

Then she turned around once, slapped her head down against my pillow, and conked out, her purr fading into sleep almost as soon as it started.

OMG the cute. Much brain juice. So impressed, too.

Did you notice — she zeroed in on the key spots that triggered my condition. She went straight to them. I have to spend hundreds of words explaining these points to humans; she just dialled straight in.

She is definitely my Service Cat.

Just need to help her get calmer in the world outside, and be old enough to develop a little more poise in the face of the unexpected, because always behaving well in public is a key part of Service Animal requirements — and that amazing little fur-girl will be all set.

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This is not a triptych

Isy / / activity, adaptation, basics, brain care, CRPS knock-on effects, imp-possible, kitten, loved ones, nutrition, radical presence/radical acceptance, self-care

I’m a writer; I think in terms of story. I assumed I’d have some definite third stage of recovery from that breakup, but no, just more process.

Not just the emotional work of disentangling two mingled lives and learning how to be in the same room and hold a practical conversation in civilized tones, and not give in either to the huge love or the awful rage.

There’s the special spoonie stuff, brought to me by CRPS/fibromyalgia/dysautonomia/Hashimoto’s disease. Learning how to get everything done every hour of every day of every week, with little help, no encouragement, no prompting or reminding that I don’t think to set up myself on that increasingly irritating & necessary phone, no underlying love to smooth the steps out or to rest in the soothing of, between efforts. With winter coming on, there is SO much to do. He has come over a couple of times to help with that. How do I say thank you without weeping?

I noticed when we first met, before we were ever lovers, that my pain and brain fog dropped when he was within about 16 feet of me. Once we were partnered, that symptom-suppression held pretty much all the time.

So now, I’m doing all this with an additional physical burden of pain and, dear heavens, so much brain fog.

It’s a process. It’s a two-steps-forward-one-step-back process… and, frankly, those are pretty boring to read about.

So yeah, it sucks. And I don’t get to stop working on it. Spoonies rarely get breaks, and never get vacation time, from being sick.

Onward.

I got a cat. She’s just over a year old, and came to me not knowing how to eat. (The irony is so thick you could cut it with a knife.) The first couple days, her hip bones kept getting sharper. A mini dog came over and showed her how it’s done. That was the first big bump forward. Her hip bones are marginally less sharp now.
She’s beginning to learn that that “I waaaaant!” feeling means she’s hungry. I don’t know how she lost track of that instinctive message, but she would sidle up to her bowl and then skitter away with a little flash of anxiety.

Drama is emotionally seductive and magnetic, especially to the young. So, that exciting pattern needed interrupting. I took up her food for hours, so there was nothing to sidle up to and skitter away from. At first, I held her bowl down to reassure her, but as she gets more settled and secure, I leave her to it once she gets started, and stay quiet so as not to distract her. I spent the usual cat-lady hours finding food she liked. (She’s definitely my cat: she likes real food, not Friskies.)

She’s quite a beauty — flared cheekbones, cute little nose, huge eyes with heavy liner, a charming overbite. A bit like Geena Davis, but with whiskers instead of dimples.

I’m taking her out with me everywhere. She gets along with everyone, having met eight cats, three dogs, two squirrels, and any number of people, with roughly equal aplomb. She’s turning into a service pet; already, my increasingly sluggish reflexes (which have given me some scares while driving) are slightly less bad. Wand-toys FTW!

Time to get on with wrestling the requirements for another day into a set of hurdles I can probably clear.

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A week on, slightly shocky but keeping calm

Isy / / adaptation, basics, brain care, CRPS knock-on effects, imp-possible, loved ones, perspective, radical presence/radical acceptance

Those of you who’ve been, been with, or treated addicts won’t be surprised to know that J’s story changed 3 times in a week, but I didn’t fall for it. He has not tried to come back, did not go to the deadly place, and is taking care of himself rather better than might be expected.

The fact that he’s not imminently in danger is a huge relief, actually. I can handle breakups — I just can’t handle mortality.

I looked back at my previous post and got a huge laugh out of the fact that I opened with one sentence regarding a life-shattering event and went straight into the nerdiest possible fugue about meds, care, and therapies that are affected by it. I’m not sure of the distinction between nerd, dork, and geek, but I’m pretty sure I’m all three, and that’s okay with me. The doc I sent that letter to is the brainiest of those, whichever that may be.

The feelings washing through me are as varied as you might expect. There are some ways I feel freed up — I finally got to rearrange the living room furniture, and it’s a vast improvement. Nobody to get all tense and cranky about moving his sofa location. I look back no the ways I’d just stopped making room for myself because it was easier than arguing. The last year and a half was a downward trend, the last year pretty bumpy, the last few months really rough, and the last few weeks we were together were frankly awful.

That, I don’t miss.

What I miss is that where he was, was home. I’m homeless in one sense, because he’s homeless in the literal sense. (He sure enjoys the camping, though.) I rarely had to scold him for anything because he could hear me yelling at him in my head; he’d give me the same pissy look my cat used to give me when he was scolded, and make the adjustment I wished he’d make, with no more than 5 soft words exchanged. He literally read my freaking mind.

I don’t know what he’ll do when the weather changes. Not my circus now. He’s facing the consequences of his own decisions, and one is that he has fewer, and at this point less attractive, options.

I found a person who knows how to get me signed up for things like help with the dishes and laundry and vacuuming, rides to my medical appointments, and other logisstical needs. The shuddering absence of J has left me with arms so overused and attention so wrung out that I had trouble driving safely home today. I actually missed a turn on a road I’ve taken uncountable times. Not reassuring, that. Fortunately, it was easy to correct.

As I explained to my passenger: I can pay attention to the road and obstacles around me, and I can control the vehcile I’m driving, and do both confidently; the rest, like where to turn, is a bit iffy.

The physical consequences crash on, no matter how calm I can keep my mind most of the time. The tearing, strengthless feelings in my hand tendons is pretty scary. My ashtma is acting up, a consstant background pull. I guess I’d better raise my antihistamine dosage, and make an appointment with my rheumatologist to look into that.

The emotions ebb and flow: bouts of anger, so seductive but I refuse to cling to them … I let them roll through and roll away; irritation; lovely memories; wry humor; noticing things he’d like; gaping wounds of loss; grief; the endless wordless cry of a mature heart that’s broken, like a descant that never stops. I let them roll through. I’m an old hand at loss. The trick is not to hide from them, and not to cling to them. Look at them, one by one or five by five as they come, and see them for what they are. Then let them go. Not easy, but so worth it.

Task focused is good. I have things on my schedule and things I have to do. I pay attention to the next task. It really helps. It’s okay to stay out of emotional space, something I didn’t used to know. It’s absolutely okay not to go prodding that open wound. I can work around it.

I was cooking up a frozen Indian dinner on the stove, anything further being beyond me and microwave dinners being disgusting to me (except rice-pasta mac and cheese, for some reason.) I sat there, stirring it gently, and taking a step back to look at the whole picture.

Aspects of my life are better. There’s no arguing, for one thing. I’m seeing my friends more.

Aspects of my life are harder. I have more creative impulses but less ability to do anything with them. The logistics of getting through the week are awful.

On the whole, my life is definitely worse without J in it. His jobs can be done by others, but the whole blooming warmth and joy and peace that he brought with him, until he gave into the “stinkin’ thinkin'” of addictive-mind, is gone, except in memory.

Having said that — having looked squarely at that — I let it go.

I remember the time I decided to give up on repeating my mistakes. It was at my first nursing job, on the HIV unit. I realized, imperfect person in a tough high-stakes job that I was, that I was probably going to make mistakes. I made an agreement with myself not to repeat them, but to pay attention and learn, and when I screwed up, to figure out how to avoid doing that particular thing again.

I waited too long for him to do what he needed to do to get better. He’s not going to do that unless and until he decides, and — here’s the not repeating mistakes part — he has no place here unless and until he has well begun that arduous journey.

Whether he takes it or not is not up to me.

Not my circus any more.

Time to have that dinner and watch a silly movie.

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Many itchings!

Isy / / CRPS knock-on effects, food allergies, neurotransmitters, nutrition, self-care, what works

Another great question about an ordinary (for CRPS!) change led to another “Isypedia” blurch. Here goes.

Once in awhile, something changes out of the blue. What is a CRPSer to think when suddenly caffeine and chocolate cause massive itching?

Nerd note: Yes, the word “caffeine” is used differently in ordinary speech than it is in botany or food chemistry. That’s okay.

There is a chemical class called xanthines, of which caffeine is one member.

Related chemicals, with very similar or nearly identical activity in the body, are lumped together and called ‘caffeine’ in ordinary communications.

“Why? Why this sloppiness??” I hear some of you cry.

Because most people are not food chemists, and what’s important is what it does to you, not exactly what to call it.

So…

Technically, tea contains theine, mate contains mateine, coffee contains caffeine, and chocolate contains theobromine (and sometimes a tiny amount of caffeine.)

But…

Neurologically, it’s all “tomayto, tomahto.”

Back to our blog post.

On developing food reactions in CRPS

First, it’s not unusual (yet not really normal) for CRPSers to develop new sensitivities and allergies out of the blue. This has to do with several things, as a rule: the digestion doesn’t break down proteins as well as it used to, and those proteins are more provoking to the immune system than they would be in a healthy body.

It’s worth noting that allergies (and many sensitivities, which can also be histamine reactions — another note for my fellow nerds) happen on the basis of molecules, not teaspoons or larger doses — and, at that micro level, everything has protein the body can react to.

Second note on allergies is, that most of what we eat contains more than one thing we could be reacting to. If I thought it were the caffeine and chocolate setting you off, I’d want to check those labels and look for similar additives.

If you’re using medical marijuana (great when it works! Wish it worked for me) then look into how it was grown. Aim for organic and, if possible, outdoor-grown. If you have allergies or sensitivity to iodine, egg, etc, then you may need to dig further and avoid marijuana grown with fish compost, chicken manure, or what-have-you. You may need to cultivate (as it were!) a relationship with an individual grower who can meet your needs.

On neuro causes of itching

However, you’re specifically noticing reactions from caffeine and chocolate, which — specifically — can activate the C-type fibers in your nervous system — the very fibers responsible for the sensation of itchiness and also for the surface hypersensitivity that go with CRPS.

So, it’s very possible that it’s not so much an allergy (which is a protein response) but that you’ve developed a neurological hypersensitivity to these C-fiber-stimulating chemicals.

In that case, it’s not just a question of avoiding caffeine and chocolate (sorry!!!) but also supporting the C-fibers so they can calm the heck down and not go further into their over-reacting.

On other causes of itching

Have you changed meds in the past few weeks? MANY meds can cause itching, especially neuro-active meds — and most meds that we take are neuro-active in one way or another.

Check with your pharmacist or doctor right away if you develop itching with a new medication.

Have you changed laundry detergent or other things that come in contact with your skin? These could increase your skin’s reactivity.

If your neurological system is being hyper-reactive, it’s not a bad idea to switch off of scented products. Keep in mind that they don’t have to test something for safety before marketing it, and their profit depends on consumers not asking too many questions. Just food for thought.

Things to try that don’t require a doctor

Some things to try for itching, if you aren’t already doing them, are nutritional (something to swallow) or topical (something to apply to your skin.)

Nutritional care for itchy nerves

– Vitamin C, preferably Ester-C (food-based, and specifically easy on the stomach and slow-releasing.) Vitamin C is one of the few food/nutrition things specifically studied in CRPS. It’s wonderfully neuro-protective and most forums recommend making it part of daily life. The range studied was 1,000 to 1,500 mg per day. Some people take 500 mg /day with good results. I take 1,000 mg.

– Magnesium, either as digestible chelates in capsule form, or as Epsom salt in a not-too-hot bath. This can really soothe hyper-reactive nerves, especially the C-fibers. If you take the capsules, take with food, partly to improve absorption and partly because magnesium can be a little hard on the stomach. (For internal use, stick with the chelates. Don’t drink Epsom salt solution unless you want to clean out your GI tract really fast.)

– Other nutritional supplements that can help moderate that itchy C-fiber activity are, believe it or not, Calcium (food-based, not rock-based) and vitamin D3. The physiology is kind of complex, but it boils down to this: Calcium not only builds bones, but it handles certain kinds of nerve transmission; D3 stabilizes the behavior of Calcium, so it doesn’t wander off in the wrong direction. Not surprisingly, CRPSers (and everyone who’s chronically ill, even in sunny locales) tend to be very low in vitamin D3. Talk to your doctor or pharmacist about your condition, your symptoms, and what dose of D3 to start with. Although too much can be toxic, that’s not something you’ll be dealing with for awhile! Unless you’re tracking this already, you’re likely to be quite low in D3.

Topical care for itchy skin

– Certain oils can help tremendously.
* Emu oil (not suitable for vegetarians) is packed with antioxidants and anti-inflammatories. It’s absolutely amazing for pain. It’s extremely well-received by most skin, and absorbs several inches deep into the tissues. This makes it a great carrier oil, as it can carry whatever is added to it right into your tissues. Be sure to get AEA certified emu oil, as that’s the only kind known to be 100% real. (Because it’s not cheap and not regulated, all kinds of things get tossed into a bottle and labeled “emu oil.”) Cheapest brand of AEA certified I know of is Pro Emu, available from proemu.com and amazon.

* Sweet Orange essential oil. Always, always blend this at 1:15 or more with other oils, because it can cause chemical burns (first time I used it in a bath I didn’t dilute it! Never making that mistake again! LOL) In other words, a few drops of Sweet Orange oil to a couple tablespoons of any vegetable oil or emu oil, makes a great treatment for that C-fiber itching.

* Clove essential oil is better for nerve pain (been used for thousands of years for nerve pain) than it is for itching, but it sometimes helps me with my itching. Same precaution about diluting the heck out of it, applies. I mix it with Sweet Orange and Emu oil for a one-size-fits-most solution.

– The herb Melissa officinalis (also called lemon balm), either as tea, hypercritical extract capsule, in the bath, or on a washcloth used as a compress, can also be helpful. It, too, has been used for thousands of years to treat inflamed and over-reacting nerves. It’s good for itching and great for nerve pain. It blends very well with chamomile, which also has anti-inflammatory (not NSAID-like; works differently) and can soothe itching.

– Some find oatmeal baths helpful, especially when it’s an allergy itch. (Sometimes it helps with a C-fiber nerve itch.) Put rolled oats in the blender and whirr the heck out of them to make your own “Aveeno bath”, and use about 1-1/2 tablespoons in your bath.
I can’t go near oats because they trigger gluten issues for me, but that’s my problem. If I could use oats, I’d add a few drops of orange oil mixed with carrier oil right into the whirring blender and whip it right into the oat powder.

What’s cheapest and most reasonable of these things depends on your situation and circumstances. I hope you find something helpful here.

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When I lose everything but me

Isy / / activity, basics, brain plasticity, CRPS knock-on effects, imp-possible, perspective, radical presence/radical acceptance, self-care, Uncategorized

This is one of several blog posts I drafted late last year and got distracted from.

This isn’t the duckiest or most amusing one to read, but it’s so important for so many that I’m posting it anyway. (My mother will probably want to give this one a miss.)

This level of fundamental-ness has a certain appeal in the depth of winter.

Fortunately for me, I don’t have too much trouble with existential questions. At a certain point, when everything I thought defined me had been blasted away, and in my mind there was not a single structure left that held a fragment of my old self, and all I saw stretching away to the mental horizon was blasted mud and broken stone and shapeless lumps and rot… I asked myself, “None of ‘me’ is left. Who am I?” And I realized that something was standing there, doing the asking.

That was my answer: I’m what is left after everything has been blasted away. I’m the immanent awareness, unable to be seen or described, simply because only less-permanent things can be seen or described.

As I think about that last sentence, I realize why objects lost their fascination for me. It was weirdly easy to get rid of gorgeous and glorious things I could no longer afford to keep. A couple of them I still miss, like my old bedstead (birdseye maple, passed down from my grandmother), but very few.

Things did get worse for awhile, and only curiosity kept me alive. (I simply had to know how the story went.) It propelled me through the work of surviving when my body had failed.

Angels appeared just before it was too late — several times; my life was a solid group effort — and eventually I fled the area and got my disability check (yes they were related) and could afford to survive. I have some photos that seem ethereal still, I look so nearly gone, smiling back from the edge of the grave, happy I don’t have to take that last step.

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As usual, lately, I’ve wandered off-course.

My ability to track a tale (remember I survived the impossible because I had to see how the story went?) is enfeebled. It’s barely tottering along on one of those cumbersome canes with 4 feet, too heavy to lift and too necessary to leave behind.

I grind to a halt in my post, forgetting what I started this for, but this time, I’m letting you in on the secret. This blog is not retired, and being incapacitated has not excused me before, as a flick back would show. Or even when I was blowing bubbles.

I’m approaching this winter with the determination that it will be different than the last, which was an endurance exercise — one that went on for 9 months, as Spring never sprung and my Summer was clouded by meningitis.

So far, I’m getting more physiotherapy, more outings, and even have a weekly pain group I meet with. The higher level of activity is key; because exercise is so important for healing and supporting the brain, I have to find ways to stay active, despite the obvious drawbacks for someone with roaring sensory and cardiovascular issues to leaving the house during a New England winter.

I’m pleased with that. Yay, me!

Now for the other part.

Too much exercise is poisonous, because I have a solid case of exercise intolerance. I can safely walk less than a mile, which really irritates me. It takes that long just to warm up!

Also, drawing and sketching is back to being hard work. For awhile there, sketches flew out from under my pencil like they’d been crowded in there too long. Now, it’s stick figures with bad hair. I draw anyway now and then, because it’s better to keep trying than to give up altogether.

I don’t want to exercise too little or draw badly, but I do it anyway. Why? Because there’s always an afterwards, and I still have to work on influencing an “afterwards” I want.

Meanwhile, as my ability to juggle logistics is holding ground, my ability to juggle language is slipping.

After I was a nurse, I was a writer. Before I was a nurse, I was a writer. I started calling myself a writer before the age of 10, and started rescuing and healing animals shortly after.

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I’m crashing into the stupefying question: “What am I, if I’m not a writer?” I feel like nothing without that. I feel like an intrusive blob of snot on the face of the earth, out of purpose and out of place and not very pleasant to have around.

My immanent awareness looks on as my sense of self weeps helplessly. It is what it is. I am what I am… whatever that is. That will always be true, even as everything else changes.

Meanwhile, though my strength and endurance are rather better than I’d hoped, my blood pressure and pulse are less stable. One more set of variables (or issues) to chase down, one more group of tests to orchestrate, one more set of diagnostic efforts to get through, one more possible adjustment to my regime to figure out, integrate, and absorb.

By the way, that lower abdominal pain has no treatable cause. Nothing to be done but roll it into the bundle of issues (or variables) to manage and work around. Every. Freaking. Day.

This is what it’s like for me to head into winter.

A cousin and I promised each other that we’d live forever until the day we die. That agreement still stands, but gee whiz, could this be a little less tiresomely complex??

Update: And here I am, 2 months later, writing again. Still waiting for drawing to come back, though.

Digesting my food is hard work now, again. Always something.

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