This is a brain-dump and research-blurch I just did for a compatriot. These are issues that come up occasionally — every 28 days, for many — and always deserve good answers. Lots of links to scientific articles here.
Pain-related cytokines (this is old information, so these studies are old, but still informative):
“Recent findings on how proinflammatory cytokines cause pain”
This article specifically cites 3 main culprits in neuropathic pain: IL-1beta (interleukin 1-beta), IL-6 (interluekin 6), and TNF-alpha (tumor necrosis factor alpha, which does a lot more than kill tumors!)
The publicly-available articles on cytokines’ role in pain are abundant from the early part of the millenium (1999-2010) but seem to disappear after 2013. I assume a lot of patentable activity is going on about it now, and given the usual lead-time on drug development, may not be available even for human trials for at least 5 more years.
Your pain specialist should be able to pull up more recent articles to share with your OB-GYN about that.
“Oxytocin – A Multifunctional Analgesic for Chronic Deep Tissue Pain” 2015
“Oxytocin and the modulation of pain experience: Implications for chronic pain management” 2015
Pain-related cytokine & hormonal changes around menstruation:
“Impact of Gender and Menstrual Cycle Phase on Plasma Cytokine Concentrations”
Women always have more pain cytokines than men, but they have more still during the luteal phase of the cycle, right after the egg is released (a.k.a. premenstrual phase) and leads to menses.
Since there’s so little science on menstruation in those with pain disorders, I include an article on menstruation & cytokines which explicitly draws a conclusion that *menstrual tissue itself* is the cytokine trigger (and endometriosis is basically an exaggeration of it), a conclusion which does support our experience of higher levels of CRPS pain with menses:
“Menstruation pulls the trigger for inflammation and pain in endometriosis”
PREGNANCY & BREASTFEEDING
Breastfeeding confers protection against noxious brain chemistry:
“A new paradigm for depression in new mothers: the central role of inflammation and how breastfeeding and anti-inflammatory treatments protect maternal mental health”
Has loads of references. It’s from 2007, but it’s so approachable I want you to have it anyway. Besides, the chemistry of our bodies hasn’t changed, only our understanding has increased.
Here’s an update by the same original author:
“The new paradigm for depression in new mothers: Current findings on maternal depression, breastfeeding and resiliency across the lifespan” 2015
It may be risky to include this, depending on your OB/GYN, because of the brutalizing confusion and ignorance around depression — widely seen as a character flaw and sign of weakness, when it’s just an overwhelming neurochemical state, and incidentally overlaps significantly with the overwhelming neurochemical state of neurogenic/central pain. In short, things that alleviate/mitigate depression also usually alleviate/mitigate central pain. It’s very simple.
GOOD TO KNOW
Let me give you two names to pass on to doctors willing to learn, for great info on CRPS: R.J. Schwartzmann, who retired in 2012 but whose work remains the most intelligent and articulate among CRPS researchers; and currently Breuhl and van Rijn are doing good work too.
More articles listed here by a trained 2dary researcher: https://elleandtheautognome.wordpress.com/crps-frequently-asked-questions-faq/
This, right after “Keep breathing”, is one of my go-to pieces of mind management. It’s about so much more than consequences. Let’s take an example.
A non-obvious choice
At work, before I got sick, there were a lot of big, well-built guys in the software engineering department, who wrote the programming code that made the business happen. (It was a software firm with a great gym on campus; hence, lots of engineers & muscley ones at that.)
There were a lot of diligent people (almost all of them fit, though few as statuesque) in the QA department, who tested the programming code that the software engineers wrote, and had to make sure it was accurate and well-behaved (yes, code is supposed to be well-behaved!) before it was finalized.
Among the QA engineers was a woman about 4’9″, one of those sweetly scintillating geniuses who didn’t seem to have a temper to lose.
One day, in a meeting, one of the most magnificent of the software engineers learned that something he’d made was not behaving well. He argued the point; this QA engineer calmly reiterated her findings. To my astonishment, he actually stood up, walked over to her, and loomed. I mean, LOOMED.
The entire room (mostly men) held its collective breath. It was out of character for this engineer to be unpleasant, as a rule; and to pick on a woman? Unthinkable.
But his brainchild had been criticized, and he did not like it one bit.
Now, I grew up with two brothers. I also worked as an ER nurse in one of this nation’s hell-holes. I know how this is supposed to go. One person looms, the other bristles, and things get louder, with the (sometimes implicit) threat-level increasing until one backs down.
I learned that day that there is, in fact, more than one way that this absolutely primal interaction can go.
All 92 pounds of QA engineer peered straight up, neck totally relaxed and head dropped back, at the scowling 180-pound sculpture of irritation and physique, with a mild air of bland puzzlement. It was as if she was wondering if he really thought standing over her changed the facts, and what was the point, which it turned out was exactly what she _was_ thinking.
Not a patch on that moment. It was wonderful.
The engineer eventually breathed and went back to his seat. Like the super-smart guy he almost always was, he moved straight on to how to fix the problem.
Given the format of conflict most of us know, the QA engineer should have tensed up and snarled, and that should have turned into a shouting match and disrupted the rest of the day — possibly involving HR and resulting in reprimands for them and hours of “training” for all. That’d make for a difficult, expensive, exhausting, and largely fruitless afterwards. These two worked together a lot, and this could have started a long downhill slide in their work relationship, which would have affected a lot more than their moods.
Instead, the QA engineer stayed on task — she held the larger view of what was needed to bring the code “up to code”, so to speak. By doing so, she gave the software engineer (who, admittedly, shouldn’t have needed it, but we’re all human and make mistakes sometimes) enough mental space and time to calm down, refocus, and get on with the important thing. Which he did.
After that, he did his looming without moving from his seat, which was no more than anyone else did. Their relationship continued to be a little testy, since one necessarily had to criticize the other, but increasingly respectful because they were both so good at their jobs. (They loved each other, professionally, even when they didn’t like each other. Sound familiar?)
I finally got it
I found my own level of tension dropping after that. Even when the brainstem is receiving hard signals, it’s possible for the cortex to choose wisely, instead of reflexively. Who knew??
My own team of software engineers were more shouty and less loomy, but it sure calmed things down when I could simply wait, relaxed, as they ranted, and then ask — in a calm, natural manner — what to do about it.
It was great preparation for living with central (that is, driven by the brain and spine) pain.
Pain does things to the brain, and central pain does more, worse, longer, and harder. However, pain is not the only thing in my brain. I have all kinds of things there, not least of which is — my mind.
There was a period when I was almost dead (sorry, Mom.) Even getting to my knees was impossible until my body had turned up the volume on itself, which took almost an hour. I was living aboard a sailboat at the time, and the fresh air and gentle rocking did me a lot of good. Not enough, though.
As this period began, I thought about it long and hard, lying there in my berth, desperate to yield completely to the exhaustion but unable to give up on life until I’d figured out the plot. Seriously, that was all that kept me alive: narrative curiosity, and feeding my cat. (Hey, whatever it takes!)
But wait, this gets even funnier.
I mentally reviewed the many adventure movies I’d seen, where the protagonist gets through impossible situations and overcomes unbearable limits by pure willpower, because they choose — over and over — to take the next step or make the next move, however hard it might be.
It popped into my head that almost all of those movies were fiction. “Doesn’t matter,” I told myself. “It’s all right. Some of them were based on fact.” Sure, I’ll go with that!
And so, with Cleopatra (Queen of Denial) riding my back…
I pushed my pillows aside, planted a fist on the settee coming straight out from the head of my sleeping berth, and pulled forward. God, that was hard. I panted until I could breathe again, then muttered, “I choose to go forward, whatever it takes.” I planted the other fist, dragged myself forward another few inches. Panted, took a breath, “I choose to go forward.” Over and over. “I choose.”
After a few days, I didn’t have to say it aloud every time. After a few weeks, I didn’t verbalize it at all; it was a silent stream of intention. A couple months later, I got hooked up to an acupuncturist/naturopath/homeopath who figured out how to gently draw my shattered system back from the brink, without accidentally knocking me off the edge. (Dr. Daniel Donner in the Oakland/Berkeley area; very highly recommended.)
Becoming super-human, or maybe more fully human
It was around this time — with social media toddling out of the BBS/chat era with its first firm steps, and blogs becoming normalized — that I developed the theory that humans under unbearable circumstances have to become superhuman, and that this is why we have myths — to show us the way past our learned limits. To quote the sainted Sir Terry Pratchett,
It’s amazing how peope define roles for themselves and put handcuffs on their experience and are constantly surprised by the things a roulette universe spins at them.
We are so much more than we think we are, than we have let ourselves believe, than this tiny moment in history and culture allows us even to notice!
As an amateur historian and someone who bounced all around the world growing up, I’ve always had a pretty solid sense that what one time/place thinks is normal, is actually pretty darn weird in the eyes of the rest of reality. (“Eggs for breakfast? But that’s dinner food!” And the moment I realized it was breakfast in London but dinner for me, and so it didn’t matter what I had.)
What I learned a little later is that I don’t always have to blend in. In fact, there are times when it’s best to ignore “normal” and get on with what needs doing.
These days, “normal” is scarcely ever a relevant concept, except as a matter of how to tune my disguise.
I’ve noticed I get better results and am treated better by others when I fall within certain parameters of appearance and behavior — ones that are “normal” either for a nice White soccer mom with arty sensibilities (on the street), or a pleasantly intelligent professional (when seeing physicians & administrators) — so I track myself accordingly. Your mileage may vary — we’re all different — so, try different things and see what works for you.
Back to reality
The point is, even at the hardest moments, and despite intense cultural programming and bitter central pain, it IS possible to choose how to be.
We don’t hear that much, especially from movies, eh? Follow your feelings! Be impulsive — it’s cool! Violence works! 3 days is enough to know someone’s soul! Good people will love you no matter what! If it/they are not perfect, it’s broken! If others disagree, you have the right to hurt them back! Sigh.
In fact, these are symptoms of a traumatized brain. I know — I live in one that’s constantly being re-traumatized. Black-and-white thinking, catastrophizing, blaming, panicking — being totally overwhelmed by huge emotions, forgetting that there is a complex human being in the midst of them, one who HAS feelings but IS NOT the feelings.
This is the un-managed internal reality of central pain: full-on red-alert, a fire drill for an inferno that never stops burning.
Feelings, impulses, drives — they’re information, not commands.
Consciously or not, we choose what to be guided by.
This is why self-management is imperative for us — and why we can be a bit fragile when the pain is high, or we have to think about being sick (like at the doctor’s office.)
We have to work to manage this impossible mess without looking like we’re falling apart. If we don’t succeed, if we simply react the way “normal” people would “normally” react under that kind of stress, we can easily lose everything — doctors, jobs, family, friends, allies, resources, the lot. We have to be abnormally strong to handle abnormally large, abnormally relentless assaults on our peace and poise, not to mention our lives and minds.
This is why being “super-human” is not a bad concept — imagine being a better survivor than X-Men’s Magneto, a cannier manager than James Bonds’ M, as resourceful as Coyote, as implacable as Kronos, as benevolent as Kuan Yin. These mythological models, not “normal human behavior”, may be the only standards that are even applicable to people in extraordinary circumstances.
For people like me (and there are a lot of us, not only from central pain), with a brain constantly under siege from noxious primal signals and in a socio-historical moment aiming to squash the disabled/poor/female/peculiar like bugs, this understanding is transformative, and very freeing: I can’t aspire to be normal, let alone change the world… but I can learn to choose my responses, and if I have to aim higher than normal to do so, there are still models to follow — even if I have to go inch by inch, fist over fist, to follow them.
It takes practice, but it’s possible. As with muscles, our habits of mind get stronger with practice. Of course it takes time, but the time will pass anyway, right?
Catching the wave
The first habit to develop is learning to notice when the wave of emotion rises. That is the sweet spot, right before emotional/physical pain (in all their strangling glory) take over.
That’s the moment when it’s easiest to catch on and remember our larger job of doing well despite everything, the moment when it’s easiest to pick a good “afterwards” to aim for and follow the inner prompts that can lead to it.
I find that the temporary relief of discharging my anguish or rage is absolutely nothing compared to the lasting relief of making things better, one choice at a time. At times, I have to remind myself of this, pause, breathe, and take the time to choose a better response than the first or strongest one that occurs to me.
It’s a constant discipline, rather than a destination; life always has more surprises in store. But I’ve had practice, and those “choosing my afterwards” mind-muscles are in decent shape. If I can get clear of mind-muddling mold, they might get even better.
Hard to do that without being able to catch the moment. It took time to learn to identify it, and when I’m particularly disrupted by pain or shock or toxic exposures — especially toxic exposures — catching that moment can be temporarily impossible.
Given good nutrition and no toxins, though: reaching for a better way to be, comes soon after we learn to identify that difficult moment. It’s a wonderful skill; makes a person very powerful in the wider world, as well as in the interior world of “living anyway.”
I think it also improves my writing 🙂
Beyond the moment
I said earlier that “always an afterwards” was about more than consequences. It was an important part of my getting through what I call The Hell Years. It reminded me that, if I survived this — whatever it was — I’d get to find out what would happen next.
And boy, was that a journey worth making!
There I was, trying to steer the 3-headed rhinoceros that is the de-mold-the-mobile-home project (dubbed “DeStroy DeMold.”) Two of my volunteers had gotten sick with things that could conceivably relate to:
- Their refusal to wear respirator masks, and
- The craptastic nature of the stuff coming out of the walls.
So, no more volunteers, and I was trying to figure out what next.
With heavy multiple mold exposures.
And food poisoning (different story.)
First things first
I declared a personal moratorium on entering my place unless I had to. Ditto for my car.
Counting the inescapable mold-factory of the leaky place where I’m staying, that means I had been sucking in three, count ’em, three, substantially different species of mold. …And feeling very sorry for myself that I was strangely unable to compensate with supplements and air filters, think my way through the end of a compound sentence, get through a pain flare without going zombie, or recover from an ordinary bout of hit-the-opposite-wall vomiting.
Sorry, letting my vile sense of humor run away with me there. I actually did get it all in the toilet; I’m just not sure how.
Attitude adjustment (with cast of characters)
Last week, my gracious hostess Laurie and I realized we had not gone to the shore this year, despite our good intentions. 24 hours later, she had us all set up, and invited her excellent friend & traveling companion Dave along for the ride.
Dave & Laurie are wonderful together. A gal so butch her nephews call her Uncle Laurie and a guy so cis he could — and did — show up in white Gucci snaffle loafers and still look straight, they bring out a gleeful zest in each other that’s contagious.
Laurie was our hinge, the one who is so close to us both, and it was impossible for me to be stranger-shy with their buoyancy lightening everything.
Dave has an enormous, unflappable black lab named Bernie as his guide dog, who avoids being lethargic simply through being so good-natured. Laurie has a teeny weeny toy fox terrier named Vinny who is irretrievably in love with Big Black Beautiful Bernie.
Imagine a stately black galleon with a high-powered white tender zipping around alongside, and you’ll have the image perfectly.
I almost brought the cat…
But five bodies and 14 feet seemed like quite enough.
So: me, a human; Laurie, human, with Vinny, pocket pup; Dave, human, with Bernie, guide dog.
If everyone sucked in their hips, there was just room to pass between the beds in our one room.
The weather was perfect. The waves were influenced by a hurricane out at sea, and were nearly Californian in size and color. The dark sand was almost silky. The water was about as warm as it gets, brisk but not bracing, according to Dave’s well-tested algorithm.
What I did on my vacation
It wasn’t an eventful trip on the outside — mostly. At one point, I saw Vinny heading down to the water, mooning hopefully after Bernie; I almost called him back, but if you’ve ever seen a terrier on a mission, you know that only going over and picking him up would change his mind. Something told me to wait.
Bernie ambled into the lap of the waves, checking on his master. Vinny toddled after, absorbed and elated. The wash of the wave splashed up Bernie’s ankles; Vinny’s little legs shot out to the sides as he tried to brace against the movement, and off he went. His human turned with perfect timing and lifted him out of the water as the backwash carried him to her, knee-deep.
I was braced to race and plunge in for some dog-rescuing, but watching that remarkable little ballet unfold was quite a moment.
Vinny isn’t the only one who got a bit more than he bargained for.
I was having a bangup time, playing at the shore break. Diving under, popping over, and frequently getting trashed by the waves is such a blast. I might have some retriever in me — probably more than Bernie, who couldn’t be bothered with boisterous water.
I saw two waves converge at an angle, and jumped on them to ride the double-act into shore. Little did I know that two other waves had approached that intersection from behind me. I got washing-machined like I rarely have — completely bashed and thrashed and flung around under the water. My sinuses got washed along with everything else. I’m really glad there were no solid objects (besides me) in that water.
I came up hooting with glee — then felt something was amiss.
Somehow, over the surf, the words, “It came out!” reached me from our pretty neighbors on the thinly-populated beach. I looked down and, sure enough, one half of my generous allotment of, um, chest flesh was making a determined dive for freedom.
Wrestling it back under cover was considerably hampered, not only by the cantankerous mechanics of a soggy bathing suit, but by the fact that I was laughing so hard I could barely control my limbs.
I’m over 50. I don’t have to care what people think. Laughing is so much healthier than anxiety!
Most of my exits were much more successful.
Apart from that, we just found the nearest beach on the first day, found the best beach on the second, chatted with the neighbors, walked, ate, told each other stories, and enjoyed the muscular shush of the sounds of the shore. We all got ice cream.
It was transformative on the inside, at least for me.
I found that I kept talking about my childhood and my family of origin — not about life as a spoonie or neuro-nerd or an Isypedia of potentially life-saving information, but about life as something quirky and full of character; if not innocent, then willing to be optimistic in spite of it all.
That was odd, but refreshing.
After a day at the seaside and a good night’s sleep (despite the pillows fighting back against my leaning-tower arrangement), I woke up feeling…
What’s the word…
Oh, how shall I put it…
What do you call it when you feel like you can tell you’re inside your skin and the mental lights are on and you can tell what’s going on around you? Y’know, zestful and buoyant and present and awake and alive?
I felt more like myself than I had in about as long as I can remember.
THAT was the opposite of odd, though it was totally unexpected.
Mold toxicity: CONFIRMED.
Recommendation: GIT THAT SH-T.
My brain unfolded like an origami map and alternative ways to get this mobile home taken care of — AND paid for — emerged from the crumpled mess of blocked avenues and despair.
And all that quiet, worried persistence about getting in at least one short walk most days? Well, the exercise intolerance packed it in, too — I walked a couple of miles the day before we left, the day we arrived, and the day after; definitely no exercise intolerance, without the wicked mold exposures.
This is huge. So huge.
Being able to exercise opens up new worlds of improvement. Nothing is as stabilizing to every body system as exercise. Few things are as stabilizing to the brain. I can’t even find words for the explosion of gasping hope I hardly dare to let myself feel.
My planner is about to explode. I’ve got things to do this week! WOOHOOOO!
A word to my longtime readers & fellow spoonies (a wise & canny crew)
Remember all the times I’ve said that it’s sometimes just a question of getting through one day, one hour, or one breath at a time, and that there is always an afterwards?
This, my dears, THIS looks like an afterwards worth surviving long enough for. Let’s see what I can make of it.
May we all have the right care, the right meds, the right supplements, the right routine, the right friends — and the right breaks.
Five years of no ocean
ended at last:
the waves curled almost Pacific blue
and crashed most assertively;
soft silky sand
burled them mackerel-patterned
below utterly spotless blue skies.
I ran out all daffy abandon
“Hi water! Here I am!”
and the waves came to greet me,
and beat me, and rub me all over
like a pack of retrievers convinced I held food…
A smug Californian, I dissed the sun’s vigor
But turns out I do burn — quite well! —
on Block Island
but oh, it was worth every sting.
Rainbow sky melts above while returning.
Sun rivers and I’m stupid happy
One glint, one shimmy, and all I can smile
is eyes locked on water, waiting for more.
DJ Fabulous! LaurieB, a local fixture at sober fests and community events, works in Western Massachusetts. She plays all styles, genres, and eras of music, specializing in all-ages events. She gets people smiling and moving and having a good time. 🙂
David Roulston, Esq, is the sort of lawyer every community should have. He does, or has done: probate & wills, criminal defense, designing implementation of legislation, mental health and community health, poverty & homeless issues, and business law.
Laurie took almost all of the photographs. When I mentioned I’d credit her, she said, “I think they’ll figure it out. Who else is gonna take them? The blind guy??”
I’m aware that I disappeared for awhile. Obsessively focusing on housing and breakup, everything else sorta disappeared. Here’s what that period looked like, framed around the 3 dimensions of life I always update my doctors on — physical, mental/cognitive, and emotional changes:
Physically: holding together with bubble gum and baling wire. Somehow didn’t injure myself with packing, storage, and less and less help with errands.
Mentally: dear gods and little piglets, did I ever get a lot done! Dealing with my own move, identifying resources for nontoxic and used building components, dealing with an identity theft, getting a new provider on board (acupuncture), looking at homes, finally getting an old friend out of a deadly situation and somewhere safe, and still keeping my appointments.
Emotionally: J used his last Saturday here helping a friend. He left late enough on a Monday that we could have a bit of morning together and say a proper goodbye. Best moment we’ve had in a long time. And so, my partner of seven years removed his hugely-wounded self to the other side of the continent, so he couldn’t hurt me anymore.
Physically: living in one mold factory, driving in another, and working in a third. Discovered that Borax, vinegar, and hydrogen peroxide are very unkind to auto interiors and soft furnishings. Discovered concromium, and hosed almost everything down with it – twice. Much improvement.
Mentally: bought a house (mobile home in a sweet park, actually – who knew!)
Emotionally: saw a beloved friend from my youth. Woot! After five friends, one by one, sat me down and told me how was going to be, I promised to include my friends in the work of making my home safe for me. Horrifically, one of my dearest and most dependable friends dropped dead. See Taming the Beast for some of her outstanding work on nontoxic self care, mast cell disease (weird allergies), and central-pain management.
Physically: much stronger than this time last year, but still have exercise intolerance, so have to go carefully. Tried to lower meds to summer pattern, but whoops! Bad idea. Definitely not getting the usual warm weather recovery; so, having a chemically and biologically safe home is more important than ever.
Mentally: flailing, burned out and not willing to admit it. Housemate/hostess pulled my head out of my butt and got me back to pacing, alternating activity and rest. Figured out how to organize the work on my home.
Emotionally: it’s extremely reassuring to be 5 min. from the highways, 10 min. from the store, 15 min. from the hospital, 20 min. from nearly half my regional friends, and have a bunch of sweet-natured busybody neighbors making sure I’m all right. Started opening up my social world, now that I’m here.
It’s been one hell of a summer.
When I look inside, I see myself as entirely raw, a walking mass of weeping wounds. Naturally, this doesn’t normally show, because I’m a responsible painiac and I’ve had 20 years of experience in choosing what to show, what to focus on in public.
Despite so much wounding, healing is possible. In fact, it’s imperative. It’s what I do.
For better or worse, here I am, still alive and kicking. With staunch old friends, something resembling a plan in place, and one new friend who touches on my past in interesting ways and opens up my sense of an unexplored future, I’m looking ahead again – not as a duty, the job of the living; but because it could be really fun, and how much fun I have is largely up to me.
I’m outrageously lucky. Yeah, multiple crap-tastic diseases, too little income, too much loss and pain; yada yada, that’s life sometimes. In these harrowing times, kindness, love, and care define my world, and that’s so very wonderful.
Life’s short. Take care of yourselves and each other – and do have fun. It makes you stronger 🙂
J just drove away from here for the last time.
Friday, he filled up the kindling box and organized the firewood to his satisfaction. (Yes, it has been cold enough in the mornings to need a fire sometimes. In late June.)
Saturday, he helped my friends change out a very troublesome toilet. It was not a task for the faint of heart.
En route, he let me know he’d decided to leave this weekend, 2 weeks earlier than planned. I could have handled it worse, but it wasn’t good.
Being part of doing something as fundamentally Freudian as changing a toilet helped, though. We both were a lot better afterwards.
Sunday, he took a “recovery” day but still mowed the whole lawn, did the lion’s share of washing every stitch of clothes and linens for me, cleaned the kitchen, and vacuumed the living room.
I wrote up an illustrated “so long & thanks for all the fish” sort of letter for him, so he could leave easier in his mind. I saw him read it, pause, smile upside-down and let one eyebrow drift up. A shadow lifted.
Neither of us slept much last night, but spent hours hearing the other toss and sigh a floor away. While I was rattling around upstairs at midnight, he came up and asked for alka-seltzer. I gave him half a box for the road. (It’s part of my gluten-exposure first aid kit.)
This morning, unable to lie down past 5:40am (my feet were spasming something awful), I got up and took a shower straight away, giving him time to slip away if he wasn’t up to seeing me. He waited until I was dressed and ready, then gave me a warm hug and a warm kiss and asked for my blessings.
I carried the cat out to wave goodbye.
When I came back, there was, of course, exactly the right amount of water in the kettle for my tea.
So, this is what it looks like to let go with love.
It’s still devastating, absolutely devastating, but a lot less wracking and a lot quieter than the usual alternative.
And now, back to my regularly-scheduled programming of coping with agony, loss, DIY for gimps, too much work with too little time and capacity, appropriate depression/anxiety, and impending homelessness.
Send in the clowns!
Today’s task: get my last box into storage, retrieve my camping stuff, and assess whether I’m safe to use the table-saw I’ll need to rent to do the subflooring downstairs. Probably not a good idea. That might have to wait. At least a week.
Okay, storage it is. And work on prepping the car for camping. Because the future happens whether I’m ready or not.
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!
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:
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?
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:
- more leeway in nearly every respect;
- less than half the moving parts;
- 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:
• ? 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?
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
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 🙂
So, here she is: my little fuzzbutt of curiosity, in a mellow moment.
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!
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.