Planning ahead

I’m getting an allergy panel in a month or so. This means I have to be off my antihistamine for 5 days before.

THAT means I have to start tapering off ~2 weeks ahead of time; 3 weeks would be safer, but I don’t see how to endure over 3.5 weeks total with that level of obnoxious symptomatology and brittle physical fragility. 

That said, I *really* want the data.

You might ask, “Why?” (Or possibly, depending on how familiar you are with the twisted satire that is my health record, “WhyTF?? Are you *crazy*??” As if you didn’t already have a definite opinion about *that*! 😏) 

Well, here goes…

Flash back to 2013

Years ago, under the tutelage of a late & very lamented friend who Knew Mast Cell Stuff like I know the back of my hands, I finally (in 2013) did my empirical testing around whether mast cell & histamine activation-like signs & symptoms I was struggling with, would respond to treatment. 

Step 1: reducing & eliminating competing problems

I had already gotten excellent neurological & biofeedback training, which worked well for many things (Go, Pain Psychologist Dr Faye Weinstein! I got tremendous and lasting benefits from my work with her. Highly recommended. “Stabilize, stabilize, stabilize.”) While I had excellent results from the neuro stabilization, it didn’t make much difference to the allergies, a particular “flavor” of brain fog, food & digestion issues, or the usual allergy circus of itching facial orifices & random urticaria.

The histological issues persisted most obnoxiously. This was 9 years ago when the mast cell activation diagnoses were not as well developed, and at a time that, though I had access to an enormous pool of well trained doctors, I was already up to my hip-waders in the maximum number of appointments I was able to keep. 

What do you think? Pursuing testing and inquiry into a set of issues that were still widely considered to be a matter of hysteria? — For a middle-aged woman with pain diseases and 60 extra pounds of weight, do you think *that* would have been a good use of my limited time? 

Smh!

So, I went empirical on it.

Two methods of science: “empirical” and “scientific” method

Both methods are scientific, in that they require diligent examination & limiting of variables as well as testing, retesting, and recording results accurately. 

(But hey, that nomenclature isn’t confusing, right? <eyeroll>)

It boils down to this: 

Empirical method: what works in this case in particular? 

Scientific method: what’s generally likely to work in many cases?

The empirical method of science is brilliant on a case-by-case basis, there’s nothing better; but avoid making assumptions beyond that case. The scientific method of science depends on hundreds, ultimately thousands, of cases, and from all those together, it generates statistical probabilities about what’s *likely* to work under certain circumstances as a general rule. It’s much more widely applied, but explicitly *not*  individualized.

This is why, as someone dealing with multiple rare issues, I test everything ~3 times on myself before deciding if it’s a good idea for my particular situation.

Now the next section will make more sense.

Right med, right dose, right time

I tried several antihistamines to see which one helped me the most. 

Then I experimented with dosing to see how much it took to get me functional most of the time. 

Then I experimented further with once-daily dosing, or dividing the dose in two and taking it twice daily. It had better results (and no “oog” feeling) if I took it twice a day.

In the end, I wound up on one of the top 3 meds for mast cell/histamine issues. I also wound up at the common dose for those with a solid case of Mast Cell Activation Disorder. (The twice-daily dosing was my own special twist, but I’ve since learned it’s not that uncommon among “masties”, as people with mast cell dysfunctions refer to themselves.)

Without any further ado, my doctors added MCAD to my list of diagnoses.

(As with every med and supplement, I continued testing it every 6 months or so, backing off the dose and looking for the minimum effective dose, but stopped doing this because of … we’ll get to that.)

But, frankly, a differential diagnosis doesn’t yield enough info to change anything causative. If I can nail specific allergens — or culprits — and receive treatments that can actually reverse this ghastly crap, that would be *great*!

So, I really want the data.

Histamines & tendon problems

I stopped trying to cut down on the antihistamines a couple of years ago, because I couldn’t bear any more injuries that threatened my mobility.

“Mobility? Huh??” I hear you ask.

One of the things the antihistamine helped with was tissue-tearing. I didn’t expect that, but was delighted not to be twisting my ankles on uneven ground or sudden jumps away from traffic, then having to crawl or scoot home because hopping on 1 foot when your tendons don’t work is a terrible idea.

As I thought about it, it made sense though…

Histology review:

Q: What happens when your histamines are active?

A: Among other things, inflammation in and around your cells.

Q: What happens when cells get inflamed?

A: Among other things, cell walls get weak and leaky.

Q: What happens when connective tissue cells get weak?

A: They tear more easily. 

Ah hah!

So, yeah, maybe MCAD could weaken my connective tissue after all — especially because, for one thing, I started out hyperflexible, which is a setup for these kinds of problems; and for another thing, the fibrosity of fibromyalgia has made my connective tissue more brittle & easier to tear.

Ducky! Another hat-trick! 🤣🤠

Back to the testing

This is the test where they put a grid on your back and scratch or inject tiny amounts of different stuff into your skin. In about 20 minutes, whatever you’re going to react to should be a nice hot ruddy lump, technically a “wheal”. 

For this to happen, your body has to have nothing interfering with histamine reactions — in other words, no anti-histamines.

Since the antihistamine I wound up on has a long half-life, I have to be off it for 5 full days before testing.

Prepping for the test

Because going from full dose to no dose means I can barely get out of bed safely (see “Histamines & tendon problems” above), I have to taper down. I’ve done this before, usually to eke out my meds when my supply is running late. It’s familiar territory. 

Experience tells me that:

  • I have to taper at a rate of no more than 12.5% of my daily dose at a time.
  • I’m best off (in this terrible sitiation) stopping for 3 days at each new dose before the next step down.

This means that it would take 20 days to taper off to 0 (shorting the last step to 2 days instead of 3) *and then* 5 more days at 0.

Doing this with tissues crying, “Go on — tear me!” And every bite of food, breath of air, bit of furniture, bump in the sidewalk, or tussock of grass all giggling in evil tones (so to speak), eager to hear my muffled yells.

Yeah. Tasteless spoofing aside, that’s not a great situation to spend 3.5 weeks in.

Then, of course, as soon as I can horse down my meds again, it’ll be several days before I qualify as human.

Then, about another 1 to 3 weeks before I get back up to baseline function.

My Halloween costume will require very little makeup for me to pass as a zombie, so that’s one bonus.

What a month-and-a-half to look forward to!

Is all this really necessary?

Well… I really, *really* want the data. If this is at all reversible, wouldn’t that be worth a few weeks of howl-worthy endurance?

Obviously, yes… but I don’t think I could keep at it for over a month. I’m good at enduring, but I’ve got hard limits.

I really, *really* want the data.

Managing towards the best possible outcome 

My doc prescribed me some prednisone to take in order to avoid winding up in the hospital over this. I look at the results of my last round of prednisone — the change in my face and the truly shocking stretch marks (which made my dermatologists blanch and leap back, no kidding) — and I consider this truly last-ditch stuff. Beats nothing, I guess. It might keep me out of our ER.

There are dietary issues to consider. (What follows is a brain-dump from my years of querying doctors and reading, as well as my empirical food testing.)

Food matters: boost the signal

I know that the system being tested (mine) can respond more truthfully if it’s familiar with the molecule being tested. For instance, I haven’t eaten gluten in years, so this test might possibly come up negative to that. 

Doesn’t mean that, the next time I walk past a bakery without my mask on, I won’t get an itchy swollen throat and everything won’t turn white for a bit, it just means my body had enough of a break to stand down, and will need to re-arm.

With that in mind, I might grab a couple of saltines before I go in. If I could calm the gluten circus enough to just be safer walking around, that would be awesome.

Food matters: reduce the noise

I’m getting off the aged and fermented food, because that makes such a dramatic difference in my pain and swelling. This includes seafood and beef and anything packaged (look up what creates histamine in food).

Despite that, I’m making exceptions for things which I want to make sure my body has experienced in the month before testing — nuts, bananas, stone fruit, fish, grains in addition to glutinous ones, even beans — although that’ll be a period of gastroparesis hell, but this system must not be “bean-naïve” for the test.

Because I really, *really*, REALLY want the data. This is the kind of info that could change the course of my life for the better. 

For that, I can get through some serious struggle. 

Ramping down steeper

I’m going to go down 12.5% of my dose every 2 days, instead of 3. This will shorten the ramp-time to 2 weeks. Recovery might be a little longer, but I can maintain attention on what I’m doing this for, for that length of time. 

Until then, I’ve got a lot of cooking to do and a freezer to stuff with things that 

  1. Won’t hurt me more than absolutely necessary, and
  2. Will include exactly what I think I need to be exposed to, to maximize the value of the test. 

If you’re in a similar situation, remember that your mileage may vary. Ask your own docs, and then ask their nurses the same questions.

The differences in the answers tend to reflect the wholism that nurses work with, a nitty-gritty pragmatism that rounds out the more optimistic notional-ness that doctors can succumb to. Both views matter.

For only the second time in my life, I might do actual menu planning. I’m usually more of a “what’s fresh? What’s cheap? What’s safe? What’s appealing? Throw it in the pan” kind of cook, but that takes brain. I’d like to insulate myself from a potentially very brain-free near future and reduce my frustration over the coming month. Having easy-to-grab, safely frozen meals sounds fabulous.

Here’s my plan…

The grocery order just arrived, so if you’ll excuse me…

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Wholeness is order

Many people have figured out before me that approaching life coherently, as a complex creature with inward & outward lives, as physical and energetic beings at once, and so on, is probably a really good idea.

I’ve spent years describing myself as a “text-based life form”, and “better in print than in person.” That was useful for a time; most of us need something to cling to, to carry us through, when we feel terribly broken.

This summer was transformative. I started it wholly committed to making my legacy; I’ve come out of it realizing that I’m very much alive, and that, if I’m going to get anything done, it has to be as a whole person — minding my relationships with those who can relate to me, minding my physical care as a loving duty rather than an intransigent puzzle, tending my crafts as sweetly as I need to be tending my recuperation, and so on.

Somehow, I’m absolutely certain that only in this way — and not in the head-first, head-down policy of my old working self — only in this way can I make meaningful progress.

Of course, that means it’ll take longer up front. But, as an old mariner, I’m well aware that prep is between 80 and 90% of the final result — so you take the time and do the prep, if you want good results.

I happily think of star nurseries (thank you, NASA , for this image), which look like glorious messes — but, from these, galaxies are born.

Logical? Well, not in any linear sense. Organically it works, though.

 

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Seat-shaped rock in a shallow stream.

The Place to Be

On a rock in a river

Clean quiet murbles and shushes

everything Not Me drawn gently off

So easy.

 

Skeeters drift on, slackjawed with peace.

Dogs huff and slosh in the shallows,

Just going by,

In furry certainty

That happy playtime is normal

And right.

 

White white aspen tickles

Blue blue sky

And the birds zip

& comment benignly

up there.

 

The wet scent

Of contentment

Soaks to my marrow

And I’m finally

 

Still.

Seat-shaped rock in a shallow stream.

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When momentum uses inertia

Wizard, with hat and staff, standing next to text of Tolkien quote.That last post, about acknowledging the shimmering sense of mortality I’ve lived with for nearly a year? Well, I kept meaning to post an update, but I’ve been having too much fun making progress elsewhere, and simply dropped the ball. I often think, “oh, I should post that on my blog,” and then – pain diseases being what they are – when I shift context to hop online, I’ve forgotten what it was and quickly get sucked into something else.

At the risk of using terms improperly, I found myself explaining this normality of painee existence as a sort of “acquired ADD.” As it happens, our brains get changed in the same places and pathways that ADD brains live in, so that our scans look amazingly similar. Those ADD-like symptoms are definitely not imaginary. I have found myself using adaptations very much like those I’ve read about in some of the terrific books on ADD. I recommend reading up on it. There’s a ton of helpful material on how to manage with and work around these attention issues.

I miss blogging. So, I hope to automate (or at least simplify) moving information here from social media. There are still interesting questions to answer, and I think that useful info we generate in pain groups should find its way to a more stable, searchable medium.

I have been sinking into this life, having acknowledged that inward message about its likely brevity. I’ve been here a year, and love my little flat more and more each day. I’ve been rearranging, creating more usable space within the same square footage. It’s delightful!

I keep the picture that reminds me of those who made this happen over the decorative fireplace, where it looks wonderful, and send grateful thoughts to its source/s – even when reaching out in real life only creates confusion and misunderstanding. We humans generally, and painees particularly, sometimes realize we don’t control how others receive us, but we can steer our own thoughts. So, I maintain this practice of gratitude, because that’s who I am and always have been, and wait for better times.

More health problems? Certainly! I will write about the gastrointestinal circus another time. I’m currently working on digesting a drink of water, and I’d prefer not to think about it until that’s done. This is the big, hairy, stinking follow-up to the first sign of trouble nearly 2 decades ago, which I wrote about (with disgusting toilet humor, inevitably) over at the post Intestinal Fortitude.

Apart from one misunderstanding and that additional body system, this life is amazing. Bit by bit, I’ve been getting a broader pool of professional and personal help and support. Bit by bit, I’ve been coming up with adaptations that bring more art, craft, and productive time into my weeks, although I have to be careful (of course) about changing tasks and changing position and managing time better than I really want to. For instance: “No,” I had to myself yesterday evening; “you don’t get to finish that row of adaptive crochet! I don’t care how pretty this is, or how soft the yarn. These helpful tools only improve my function, they don’t correct the problem! Put. The yarn. Down. Thank you.  Now go do something else.”

So I did.

And then I treated my right forearm with everything in my toolkit. And then I made myself promise not to pick up those tools for at least two more days, because that’s what it takes to recover when I’m forgetful enough to do crochet on a couple of consecutive days. Change those tasks! Figuring out a crafty solution is not as important as protecting tomorrow’s ability. Or even tonight’s. I can use myself hard, but I’m not allowed to use myself up. I don’t count on a ton of recovery time.

I’m back to using dictation software, in order to make better use of my arm time. The stylistic difference is clear to me, but it probably doesn’t matter. This is a good compromise to make, although it’s not necessarily an easy one. Dictation is a strange, slow way of speaking, and it forces me to think in chunks rather than in thoughts and words. But hey, it works!

Times are changing. Whether or not the current American president behaves any better, whether or not the next American president has the moral courage for fundamental changes, whatever, times are changing. My own possibilities are opening up, and I’m not holding back. I didn’t even know I was, but boy, things have changed since I stopped trying to eke everything out! I’ve got things to do, and I’m not waiting any longer to do them.

If I were more self-conscious, I’d throw in a bumper sticker-appropriate remark here. I’m out of ideas. I’ve got other things to do now. Maybe next time. Maybe. 🙂

Take care of yourselves. When you can’t, take care of each other. When you can’t do that, take care of your world. It helps.

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Active presence

I love the term “radical presence” because it feels radical to jump the barrier of overwhelming emotion to land face-to-face with the moment and be able to look straight at it regardless. However, in practical terms it’s the opposite of radical — it’s conservative in the classic sense, because it puts us back into the realm of what’s demonstrably real and solid.

Therefore, conservative presence is the same as radical presence.

What a wonderful object lesson in putting political branding aside.

However, for the sake of clarity, I think I’ll start calling it “active presence”, as it usually takes an act of will.

When I was working as a nurse, an important part of the job was teaching people what they needed to know in order to go on better: dress the wounds, improve activity, improve nutrition, manage impaired systems (immunity, pain, respiratory), take care of relevant organs (heart, liver, pancreas, kidneys, gut, brain) and so on.

I’m sorry to say I was too idealistic at first and found myself being scoldy. The word “should” showed up a lot; worse still, “shouldn’t.” Argh! Words I’d love to take back!

I finally learned the key principle of teaching & training around life skills, especially primal ones like eating/drinking/moving: people have to start from where they are, not from where anyone, including them, thinks they should (ugh) be. The ideal is not relevant, only the real.

The first step, therefore, is to find out what that reality is, no matter how egregious. Their best hope of improvement is almost always in small, manageable steps, starting right from their current reality.

This led me to my first understanding of active presence: change has to start from this eating habit, this activity level, this degree of self management. No others exist yet! Trying to pretend they do only builds castles in the air.

However, I’ve seen patients of mine go, for example, from couch potatoes with snack-stocked shops and triple-bypass heart attacks to organic-grocery-owning half-marathon runners in a couple of years, by starting with tiny stepwise improvements: cardiac rehab class, to slow walks, and on up from there.

woman walking up beach, looking totally at home in her skin.

There are no guarantees (it’s easy to joke about people with great life habits getting hit by a bus) but hydration, nutrition, fresh air, and exercise tend to pay off tremendously– usually after a clunky adjustment period, as body and mind lurch through the initial changes.

Of course, the time that new habits take is going to pass anyway. Would you rather be reaping rewards at the end of it, or find yourself back in the rut that put you into medical care?

I’ve said exactly that to many people, with honest attention. This isn’t a trick question, nor is it an occasion for smarm. It’s a key question we all have to ask ourselves periodically throughout our lives, in one way or another. Everyone has the right to contemplate and answer that question honestly, even if the real reaponse is, “I like my habits/my rut, I see the trajectory, I know where it will take me, and I accept that probable outcome with open eyes.” I’ve had people say that, in tones varying from sweet concern for my feelings to roaring defiance. It’s all okay; it’s their call. I’d ask if they’re interested in cushioning their fall or minimizing damage to others, tailor suggestions accordingly, and then call their physician to adjust expectations and ask about/offer any ideas for mitigation over improvement. (It was never a total surprise to their doctors.)

As a patient, I have made — and continue making — complex changes in order to stay as well and functional as possible. I’m persistent like that. To me, being incapacitated is intolerable. I’d rather have better options.

“When you’re alive, anything is possible. It’s being dead that seriously limits your options.”
– Jodi Taylor

Active presence puts me on ground firm enough to step off from, and actually get somewhere. I’ve been living with a strong inward nudge to simplify, focus, and hurry up, because I don’t have much time left. It may be fallacious (I hope so), my subconscious working to override my “completion anxiety” about larger works. Given the accuracy rate of these deep, strong inward messages up to now, I’d be a complete idiot to ignore it. So, I’m simplifying, focusing, putting my ego (which is where this anxiety resides) off to one side, and buckling down on building the structure of my legacy in my head. I’ll discuss that more when there’s some output.

Dying is horrible. I don’t want to do that, ever. I’ve started to, a couple of times, and I’ve seen far too many loved ones go, especially those with these diseases. No words, no words for it… That said: Being out of this relentless, grinding circus of delicately-balanced tolerability, with horrific and likely further life-limiting consequences for certain mistakes? Really looking forward to being done with it! There will come a time — at some point, for me as for anyone — which will suck, and shortly after that, I’m absolutely certain there’ll be an end to this (extremely well-managed) biological terror and the unimaginably cruel pain that drives it.

I have this stubborn inner nudge that it’s not far off for me personally. That’s definitely NOT my choice, it’s the circumstance I find myself in. Without having wanted or chosen it, I somehow find acknowledging it to be hugely freeing!

That is intensely weird, I know. Also uncomfortable and maybe bitter and sad.

But that’s what is true for me, right here and right now.

From here, and only from this point in my often tortuous reality, can I move on.

I accept that.

Here I am.

Time for the next little step. Who knows where it’ll take me in the long run?

Let’s find out.

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Focus

There’s a lot going on.

My own health took a hard dive late last year and the damage continues to evolve…

…On top of an increasingly human-hostile political system and increasingly deadly climate.

Fun times.

So, yeah, sitting here on a big pile of crap. But that’s not the problem.

What really bugs me is this relentless, quiet, basso-profundo voice murmuring in the back of my brain, “Hurry up. You don’t have much time. You, personally, don’t have time to waste. Pick your focus. Nothing else matters. Get to work. You don’t have much time.”

I used to have a lot of projects running at once…

  • I didn’t tell anyone, but I secretly hoped I’d be able to run again. I used to run 4 miles up & down a canyon in the redwoods before work most days. It was glorious. Before that, on the other coast, I ran 5 to 10 miles along the banks of the river in Alexandria, Virginia, because it felt good and kept my head clear for work on the HIV ward. I ran from one place to another because it was faster than walking.
    Yeah. Well. Between dysautonomia screwing up my circulatory responses and adrenal glands, the tissue fragility of mast cell dysfunction vs. undiagnosed EDS offering to rip holes in my tissues again, and the recurring exercise intolerance, I can let that one go. I enjoyed it at the time, look back on it fondly, and intend to be grateful for that much.
  • I was going to start a business with a line of absolutely stellar pain creams I came up with. Seriously good stuff! It’s at least as good as the medical marijuana salve I used to make from top-shelf medical-grade bud — but totally legal everywhere! I was looking forward to getting that out to my fellow painees, doing some good and making some money. (Comment if you’re interested. I could be persuaded to sell my stock-on-hand.)
    Instead, I’m willing my recipes and equipment to a friend who knows people. She can get it out, and make more when that’s gone. Meanwhile, I’ve got a few hundred bucks locked up in the only exception to my “2 piles” rule for money: 1 pile (my paycheck) for monthly expenses, and 1 pile (an insurance account from the Worker’s Comp branch of the higgledy-piggledy US system) for treatment and survival. That 3rd pile, which belongs to the business and only to the business, is gathering dust. It might help her get started.
  • As regular readers know, I once hoped to make my own safe home to age, work, rest, and die in.
    The downside to owning a home is clearer than ever, and to a limited budget and limited body, it’s a disaster waiting to happen. That dream is dead, staked, burned, and the ashes are buried at the crossroads.
  • I love fixing sh-tuff. The dopamine wave is delicious. However… too many piles of sh-tuff waiting to be fixed, plus associated tools and supplies.
    I’ve donated, bartered, and tossed away more than I even knew I had to spare. So far, I don’t really miss it.

Months ago, I gave up all my arts & crafts except writing and drawing. (And making masks.) I came up with some chirpy sounding reason, but it was about clearing my agenda and narrowing my focus.

There’s something intense about that voice. I look back and realize I’ve been responding to it since before this GI crisis evolved. Thinning out my pursuits. Thinning out my belongings. Thinning out my life.

Narrowing my focus long before I could hear the words this clearly.

For awhile, I thought it was a symptom of wonky chemistry, as I’ve had to do that medication square-dance that people who need neurotransmitter stabilizers have to do now and then. Chemistry is pretty good in here now, and that voice is clearer than ever.

So, here’s what there is to work with:
* I’ve done a lot of writing and training.
* The biological-sciences part of my brain has kept its doors jammed open, despite all the other closures.
* I’m an honest enough historian to know how too many people have been shut out of the process of using their health care systems, due to gender, race, class, and lousy sociohistorical times.
* Me and my friends have developed some powerful tools for being seen and being believed.
* Also, we’re pretty delightful cartoonists. (Hey, it’s a great teaching tool!)

It might be time for all of this to come together. My mission, should I choose to accept it, is to “drive” turning all this into a body of work that can continue teaching, training, and translating between chronically & profoundly ill patients and the rest of the world, long after I’m gone.

I have only 2 jobs now: stay as well as possible for as long as possible, and craft that legacy.

It’s frightening to contemplate pushing everything else off my plate, but the experience of the past year has shown me, over and over, the peace and release that happens after.

I don’t have to find the perfect home, although I’d sure be grateful if it landed on me and sucked me right in. (I can’t pack myself up to move one more time.) I have to make this one work better, and get on with the rest of my life. I honestly don’t think I’ve got a lot of time.

But then, I’m not sure that’s the point. Maybe I just can’t focus on more than 2 jobs anymore.

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Chaos theory

  1. As regular readers know, I’ve had an eventful life. The past 20 years, particularly, have been a circus of bizarre improbabilities, oxymoronic paradoxes, and irreconcilable conundrums. My life reads like a dystopian comedy, if your sense of humor is sufficiently twisted.

This is why I’ve got the category “imp-possible” going in this blog. It looks merely cute, but it has a lot of layers. Imps could be little devils, or little fairies, or little children. They emphasize the power of the small. It feels like the only power left. “Imp” also suggests the power of the unexpected.

As the current American president’s so-called “tax cut” comes home, the US Disability Income management agency, Social Security, has decided to trim costs in anticipation of their lost income: they’re cutting my pay, on the grounds that the Worker’s Compensation element of US health care paid me off for being hurt. Separately, they handed over a bunch of health insurance money so Medicare wouldn’t have to pay for my work-related treatment.

Social Security confused the two, and then added zeros to the left of the decimal, divided it by 12, multiplied that by the square root of Guatemala (I’m making this up, just like they did), slapped a bonus on it, and decided I make OVER $5,000 PER MONTH and they’re going to count 80% of that and dock my pay by ~$160 per month…

I’m allowed to make over $5,000/month? Where? How? Sign me up! But wait… huh?? You think I actually have $5,000/month???

Yeah, I’m confused too. (The payout was good, but not that good: I got a sturdy, 10-yr-old car and a year’s worth of rent in a clean, dry cottage out of it.)

That $160 is what allows me to keep my pain-cream-making gear & off-season clothes in storage *and* pay for my writing course at the 50% discount I negotiated with the teacher (I’m doing that course instead of buying books & music for a few months.) I’m not sure any of that counts as extra these days.

They said this would be (future conditional tense) reflected in my pay as of December 2019 (whaaaaat???)…

Either they’re as confused as the rest of us, they’re in even harder denial about which year this is, or they’re setting up to make the pay cut retroactive in case they decide that that’s in their best interests. Also, Social Security being who they are and the current US administration being who they are, this feels like the first move against our lifeline, not the only move.

… I’m sitting here speechless again. Happens every time I think about it.

This is on top of the brutal horrors of approaching winter (relentless agony, burning brain, incapacitating fog), no bathtub (CRPS’s disruptive surface effects creep up my legs and over my back and make my shoulders, hips, and right arm into bloated purple sausages wrapped in electrified barbed wire, with no way to push back), encroaching mold (which multiplies everything, including mast-cell hyperreactivity/disabling allergies, heart dysrhythmias, gut problems, and it adds respiratory diseases to the mix), and gastroparesis so bad that every other day I have to do a big ol’ — you don’t want to know. Trust me. Even I can’t make it funny.

My psychotherapist is savvy, sweet, and has that merciless faith in her client that the best of them wield like surgeon’s tools (yes, this is relevant, hang on through the curve)… I fell apart completely in our virtual visit and whispered in stricken tones, “I don’t know if I’ll make it this time.”

After acknowledging the depth and legitimacy of my feelings and recognizing my prior successes against staggering odds (she does know her job!) she encouraged me to see the breadth of creative possibility embedded behind, “I don’t know.”

I blinked, because that sounded pretty darned merciless, even for a top-flight psychotherapist. (Keep in mind that surgeon’s tools include, not just scalpels and silk, but electric saws and the sprung barbs known, deceptively, as towel clips.) She wouldn’t give up, though.

I agreed to accept that as a working hypothesis.

On reflection, that thought began to feel more like pre-2019 Isy, before my heart got ripped out and stomped on a little too hard by a few too many, and my system fell apart so badly in the storm of it. It began to feel more like the Isy who, 13 years ago at the start of the Hell Years, looked around at the absolute rubble & blasted mess of everything I thought defined my life, and realized someone was still there doing the looking, so there was still an “I” and I wasn’t done yet. It felt more like the Isy who made the term “imp-possible” a regular category. I didn’t know where that would lead me, but…

I didn’t know how to finish that sentence yet.

This morning, while listening to an audiobook that’s a romantic comedy about overthinky nerds (still relevant; hang on through one more curve), I used the toilet successfully for the first time in months, without having to resort to the apparatus hanging nearby for the thing I’ve had to do that I won’t tell you about. (It involves soap & warm water, nothing too ghastly.)

I use audiobooks to keep my brain from overheating. It gives me just enough to focus on that I don’t drive my thoughts off a cliff, and it’s not so intrusive or demanding that I can’t do ordinary tasks at the same time.

This one had gotten to a part where the author discusses basic chaos theory: chaotic systems (and I defy any biologist to come up with a more chaotic system than a dysautonomic human body with longstanding central pain syndromes) … where was I? Right. Chaotic systems tend to get more and more chaotic until a sort of tipping-point is reached and they reorganize at a higher level of criticality.

What the heck does that actually mean, anyway?? What do they mean by a higher level of criticality?

Partly, it means that a lower level of energy is required to maintain that state of chaos, even though it’s still a higher level of chaos.

And that (I thought, as I looked up at the equipment I was going without at last) meant that I could do more coping with less effort.

Once you’ve prioritized your needs hard enough and developed your adaptations effectively enough, it gets a whole lot harder to throw you off your game.

I can work with that.

The next level of chaos is here. I have no idea how it’ll unfold. That said, I’ve already reorganized at a higher level of criticality.

I’ll meet it somehow. I don’t know how. I’m still here doing the looking, so I’m not done yet.

In honor & memory of Ruth Bader Ginsberg.

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Wizard, with hat and staff, standing next to text of Tolkien quote.

Sizing the Covid-19 problem, for real

Like many, I’ve been watching the extraordinary infinity-ring circus of Covid-19 with rising confusion.

Old amber-screen lettering showing *TILT* like on old pinball machines

I hate being that confused.

So, I thought about how to cut to the chase. I investigated mortality figures, looking for clarity on the competing narratives about the actual danger posed by Covid-19. (This is aside from the epidemiological information, which is hard work for me and possibly beyond a lot of people. Look into attack rate, latency, and lag if you want to know more about the reasons for its spreadability.)

This boils it down to one simple, definitive marker:

How many die? Because that’s the point.
Lead-grey statue of dark angels swooping down from the sky

Comparing mortality numbers

This is all out of a U.S. population (as of 2019) of 328,200,000.

Annual US death rates from various causes in 2019 (or 2018):

36,560 … Highway fatalities (2018.)
 5,250 … Fatal workplace injuries (2018.)
48,236 … Adverse medical events ending in death (including surgical problems, allergic responses, medical devices, prescription errors, and fatal drug overdoses.)☆
61,200 … Seasonal flu, 2018-2019 season.
15,820 … Those with HIV, of all known causes (2018.)
Fatalities due to Covid-19 in the US in 2020, only up to Sept 1:
About 180,000

Expected to exceed 200,000 in 2 more weeks.

🤯😱💔

Questioning the data

If this number were as low as 2X the nearest competitors, I’d have dug into the question of just how bad the Covid-19 reportage is.

(Hint: lots of problems, some pushing the numbers up, others pushing the numbers down.)

It’s nearly FOUR TIMES higher than the nearest causes of death. Even I can’t pick a big enough hole in that number to change the outlook!

Bottom line

This final figure is inescapably bigger — in only 8-9 months! — than any other major/relevant cause of mortality in an entire year in the U.S.

So… death by Covid-19 is a real problem. A huge problem.

It’s a real, huge, problem.

Please protect yourself & others: don’t share air or germs.

Self-protection skills

For my fellow chronics, don’t be too worried. Surviving this is a 3-part skill, and you’ve mastered much worse. You can do this.

1. Dilute your air. 🌀
2. Protect your airway. 😷
3. Wash wash wash. 👐

Here’s what that means:

1. 🌀 Get as much air as possible around you. Avoid recirculated air. Open windows in closed buildings. Dilute, dilute, dilute your air. Even a little! (Work within your constraints.)

2. 😷 Cover all your breathing apparatus with something that meets these practical criteria for masks that protect *you* as well as others:
A. Seals: doesn’t gust air out the edges and passes the “doesn’t fog glasses” test.
B. Protects: has enough material/filtration that you can’t see any light specks peeking through, when you hold it up to the light.
C. Doesn’t vent. (Apart from exposing others, venting can also create weird ripples for super-small viruses to ride back in on. Look up “Venturi effect”.)

After reading mask tests until my eyes bubbled, I agree with these guidelines. Plus, no codes to remember!

3. 👐 Wash, wash, wash your paws & whatever you touch or touch with. Alcohol will do in between times.

Dealing with questionable cleaners

After two painful toxic exposures, I learned that 40 proof in a spritz bottle smells better, is easier & potentially cheaper than the gooey store stuff, and is far safer than methylated or isopropyl.

Alcohol-free folks: look into spritzing 3% hydrogen peroxide, which kills viruses faster than Clorox (watch your clothes, it can bleach too), proven essential oil blends, or even soapy wipes. Read labels for virus killing info.

Summary

THIS IS NOT IMAGINARY.

The death toll from Covid-19 is horrific — no matter how small the comparative R’s are.

It really IS a huge problem, still unfolding.

It’s appropriate to take it very seriously — and intelligently.

You’re not helpless. You really can protect yourself and your loved ones with that simple 3-part skill set:

1. 🌀 Dilute your air.
2. 😷 Protect your airway.
3. 👐 Wash wash wash.

Follow these guidelines for the best chance of staying well.

Reflect: “adequate protection” means masks AND 6 feet (“safer six”.) Both masks and “safer six.” Look around and see where that does or doesn’t happen.

Tip: Most eateries do takeout now, and parks are open for meeting in 🏕🏖🏜🏞.

We all have horrible choices ahead. Hope it helps to have a little coherent, practical, straightforward info. 👩‍⚕️👨‍🔬👩‍💻

Note on, & list of, sources

Sources are all primary data collection organizations within the federal government, which has access to all the original info streams:

– U.S. Census Bureau
– U.S. Bureau of Labor Statistics
– Bureau of Transportation Statistics (a dept. of U.S. DOT)
– The Joint Commission (of AHQS)
– DHHS-NPDB (National Practitioner Data Bank)
– HIV.gov
– CDC.gov
– EPA.gov

☆A statement along the lines of “prescription drug mismanagement results in >2M injuries and 100,000 deaths annually” is cut & pasted into many articles, some going back to 2005, despite the advances in monitoring and treatment in the past 15 years. Therefore, those figures are meaningless.

I wish politicians realized that made-up figures never improve the debate. They’re only bad for everyone’s blood pressure, at the very least.

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Living anyway, up at the sharp end

Ladies, gentlemen, and others, we can do this.

The tracks have been laid. All we need to do is acknowledge them, and accept where they can lead us.

The most recent relentless global pandemic was HIV. (Note: We still don’t have a safe & effective vaccine for it.) It changed all our lives forever, in ways that most people no longer notice.

My first nursing job was on a unit that specialized in HIV, in 1991. The treatments were new, the extensive effects of the disease still poorly understood, and everything was still very much in flux. Sound familiar?

We were pretty sure how it was transmitted — hence the dawn of Universal Precautions, where old nurses had to learn new tricks, like putting on latex gloves and a mask while running to a code blue. My class learned it alongside our other skills, so we usually found ourselves promoted to leading operations until the “dinosaurs”, who otherwise knew what they were doing, got kitted up.

What I learned from my patients then was that, in facing such a horrifying illness, basics matter:
– good nutrition,
– good information,
– adequate activity,
– relentless adaptability,
– cheerful determination,
– true friends, and
– emotional integrity — the only ballast burly enough to keep a person upright through wave after wave of bereavement and harrowing loss.

Obviously, those lessons tailored my response to my own ghastly illnesses. The more science discovers, the more sense it all makes.

“Emotional integrity? Huh?”
This is closely related to “radical presence” and “radical acceptance”, useful terms in trauma therapy.

This sense of the world spinning out of control, all bets are off, legitimate fear and uncertainty, not sure how we’ll survive, the horror of realizing that we can never go back to our pre-Covid-19 reality? That’s all traumatic, in the psychological sense. It’s legitimately frightening and disruptive of life.

This pandemic is a profound, global, traumatic event, and not everyone is handling it well — some leaders especially.

When dreadful things happen, we want to fly, fight, or freeze.

Flight:
Pandemics can travel with — or to — you, so, as Europe learned during the Black Death, running tends to make things worse all over.

Fight:
Pandemics don’t have faces. They can’t be punched or shot. Doesn’t work.

Try telling that to the weird extremists screaming for their imaginary right to kill and die without even trying.

Ah, denial. It’s so predictable, and it does not help.

The opposite of denial is emotional integrity.

This is the knife that cut through the fog after my Dad died; the sharp anguish somehow opened up my eyes to the silvered beauty of morning mist on the trees, and the bottomless comfort of being around my brothers — the only people to be similarly wounded by the loss, and whose sense of humor is as quirkily angled as mine.

There was no point pretending he wasn’t dead. Nothing would bring him back.

There’s no point pretending that Covid-19 and all that goes with it isn’t happening. Nothing will undo its intrusion or the consequences of our leadership and our collective actions.

It’s okay, and healthy, to let go of the fact now & then and focus on something equally real but maybe more fun, or at least more pressing. Doesn’t change the new reality that awaits the return of your involvement in dealing with it.

The weird and counterintuitive point is this:

Starting from “This is what’s real, and it truly sucks” opens up the barn door and lets out all the good feelings too.

Suddenly the air smells better, my real friends matter more, priorities simplify, internal muddles settle down… Although I become more keenly aware of the grief and loss and pain, it’s also natural to be more aware of the things that help me bear it. It worked then and it has worked through all the 21 years (, 3 months and 21 days) since then, in which I’ve lost far, far more than I ever imagined was possible. (Long-term spoonies and the much-bereaved, you get it. Like many, I’m both.)

You know how the sun keeps coming out and the world keeps turning even though you’ve just had a loss that leaves you almost prostrate? There’s a reason. Open up and let it in. It’ll wash through and leave you stronger.

Emotional integrity is learning how to stand and face the feelings, look straight at them, acknowledge them, name them, assert what they are. Then release yourself into the wider view that incorporates and surpasses them. Grief is complex anyway, so it makes sense, when you face it, to expand awareness enough to accept feelings that don’t suck, too. It’s weirdly freeing.

Sounds odd, but it works. 5 thousand years of meditative development and ~50 years of neurological and psychological science all show this. Powerful tool; simple, though not always easy, to use.

I write this to remind myself, because I’m struggling.

I’ve lost another friend to suicide (not impulsive; she was truly done with her life), on top of the Covid-19 reality and the slaughter of my homing dreams and the shockingly multifarious personal devastations of 2019. Oh, and worsening disease with spreading & intensifying CRPS and either worsening neurovascular dysfunction or maybe a vascular manifestation of EDS, which recently killed a most excellent friend who was my angel of survivorship.

So yeah, tough times. Absolutely craptastic in so many ways. (But it could certainly be worse. I finally reside somewhere safe & kind, and I’m truly grateful.)

But still, I live. Still, I walk. Still, I love. More than ever. Still… I must find a way to go forward.

I don’t have to feel good. It’s a tiresome fact of my life that I almost never do. (The last time was a little over 2 years ago, in a successfully pain-killing vitamin C and Epsom bath after the right meds, my lover peeking in and giggling, and the songbirds going nuts outside.)

I just have to continue to feel — and remember not to close the door too hard or too long on grief and pain, because then I lose joy and wonder as well.

We can do this. We can all learn to do this. I mean that in pure sincerity.

It’s worth the effort of learning to do so at will, and not wait for the rare gifts of unavoidable joy to bring back a bit of life. I think we have to go out and get it, thorns and all.

Of course it hurts. Is that the point? There’s so much more to life than just all this terrible pain. I know that, even when I don’t feel it.

This is the diamond-hard point of “living anyway.” I never said it was easy. What I have said, often, is: there’s a future worth having — we just have to live long enough to get to it.

L’chaim: here’s to living… long enough.

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Next step, stop!

Update on wifiddling…
I got an idiot-proof radiation meter. Wifi is in the microwave band of 2,500 GHz and the additional 5,000 GHz band, which are part of the radiofrequency band, abbreviated as RF.

Here’s the reading from upstairs’s wifi, beaming down to where I used to have my sofa:
TriField Meter showing RF reading of .029
Here’s the reading where I have the sofa now:
TriField Meter showing RF reading of .004
I found a couple other hottish spots, but I also found a sitting spot that registers nearly 0 in every direction (as does most of my bed) and that’s where I take tea and pills in the morning.

I really like having data. After finishing my last post, I thought I was going to have to spend $1500 at the very least for partial protection, and start at $2200 for the whole enchilada, and where the heck would I get that? (My savings are tied up in a messy little mobile home I can’t go anywhere near.) Instead, it turns out I just need to move the furniture a little, and stay back from the windows that look next door. MUCH cheaper!

It turns out I’m just shatteringly tired. I’ve been living with too much fear for too long. Fear uses up a lot of energy and neurochemicals. On top of the relentless pain signalling (which uses a lot of energy and neurochemicals) and the neurochemically-expensive and exhausting work of having to juggle the exponentially increased effort and decisions required by disability AND poverty (each of which uses a lot of energy and neurochemicals)… once I got a safe and sane chance to rest, it’s like aaaaall those energy bills are coming due at once.

… To clarify my relationship to an excess of rest, let me relate a work anecdote.

I was new to software. I was still used to the pace of nursing, which is inhuman and unforgiving. I said something about having completed 4 out of 5 of my tasks (which I didn’t realize I had another week to complete) but I hadn’t completed the 5th because, I said with chagrin, I was probably being a lazy cuss.

The entire room erupted in laughter. Me — lazy? What a joke!

After 20 years post-injury and still being upright, articulate, and seasonally functional (which takes a TON of relentless work) I’ve almost adjusted to the idea that I’m the opposite of lazy. What I can do, I will, as soon as I can do it safely and adequately. That’s just how my programming goes. Good thing, too, or I’d never have made it this far.

It turns out I’m just phenomenally tired right now, 99.98% of the time. I’ve begun to stop apologizing for it, because it’s clearly beyond me. It just is, and will continue to be until it’s over.

When I can, I will do more. I have absolutely no worries about that, because I know in my bones that I’m the opposite of lazy.

I just really need to rest. I didn’t know it was possible to be this weary. Of all I’ve read about profound idiopathic exhaustion, the only thing that consistently works with no further damage is to rest thoroughly enough and long enough. Plus maybe a bit of careful, inch-by-inch support with Chinese herbs, which I’m also starting.

Rest. What a concept.

Well, here I go…

Ready? Set?

Resting.

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