Glorious moment

Isy / August 3, 2023August 3, 2023 / imp-possible, loved ones, music, perspective, story

I’m enjoying my monthly latte, and it’s excellent. The café is playing songs from my youth — more precisely, Elder Brother’s youth. He got an extra share of social instincts, and the latest music — starting in the early 1970s and going through the mid-1980s, an unbeatable time for music — soaked through his walls and filled my burgeoning world from the time I was in single digits. Name any great artist of that time, and I heard them through his walls.

In the evenings, my mother would claim ownership of the air with “her” music, playing records (vinyl was it, for a long time) of gorgeous classical music and the occasional lush opera; the latest by Jacqueline DuPré; a masterclass from Yitzhak Perlman… unless she felt like practicing piano, when she’d float upon Mozart or Haydn, or dance out a buoyant dose of Scott Joplin. (She could jam on that ragtime!)

Because she adored her kids and knew how to listen to music even when it wasn’t “her” genre, she learned some Beatles, 5th Dimension, and Elton John. She even wound up getting a guitar and learning that, because this was the very height of popular American folk music and she had a social conscience as well as an ear for music. Carole King, Buffy Sainte-Marie, and Pete Seeger came into the rotation.

I never learned to choose music, because I had the astonishing luxury of growing up on the best of it chosen by those around me.

So, I’m sitting here finishing a creamy gorgeous latte that won’t make me sick; listening to the Beatles, Steely Dan, CSNY, Prince, Paul Simon, Peter Frampton, and other luscious familiar voices; in the middle of one of the sickest and sorest summers of my entire life (which is saying something)… and this, folks, this right here is a glorious moment.

In this moment, I do not hurt. I’m not struggling to stand or move. I don’t have to fight to remember something crucial or organize another superhuman effort to stretch across the sometimes-impossible gulf between a conventional physician and someone who’s been very sick for a very long time. I’ve acquired 5 new specialists so far, and, mostly, I’m desperately tired.

Right now, I’m gently suspended in a better time. It doesn’t demand anything from me; it just feels good to pay attention to it.

I told the barrista, “This is the song list of my youth.”

She said, “Aw!”

I said, “I had a great youth.”

She caught my eye and was too moved to speak for a moment.

I’m not misty-eyed. Must be allergies acting up. Even though I feel so good.

Morning exercise, redux

Isy / July 19, 2023July 19, 2023 / activity, adaptation, basics, brain plasticity, imp-possible, martial & internal arts, radical presence/radical acceptance, self-care, what works

Flashback

Up until I got the injuries that precipitated CRPS, I used to run about 3.8 miles (about 6.1 km) up and down a redwood canyon most mornings. It was a highlight of the day: watching the light stain the tops of those glorious trees, waking the birds as it went, until the whole forest was filled with the noise of thousands of adorable featherbrains screaming their fool heads off, and the spiraling redwoods were soaked in molten gold.

I sprained my ankles a few times, leaving them with permanent puffy-pads. One time it was a bad sprain (I was pretty sure it was broken, given the huge swelling and rapid bruising) and I had to crawl and hop the last mile-and-a-bit, but I got there in the end because I’m just that kind of bonehead. I drove my stick-shift to the ER because, after all, the foot was still attached and all I had to do was push a little.

…Bonehead. (With, admittedly, an unusually high pain tolerance.)

Got poison oak a few times, until I went back to using poison-oak honey in my tea for the passive immunity.

I was kind of a sucker for a challenge, and I liked figuring things out.

I also liked the boards they had laid across a sandy furlong of the path to keep the sand from getting ploughed too far by the horses. The boards were just tall enough to make me hop them, and I liked pretending I was a horse trotting through a series of in-and-outs as I popped over them one after the other.

Great way to start the day.

And then what happened?

The repetitive stress injuries of long hours with keyboard and mouse, led to a series of wrist surgeries and complications in a couple of years. The CRPS diagnosis took longer.

What with all the roots and stones and the sun being in my eyes for the latter part of the run, I did stumble a lot. Having to catch myself went from being a diversion, to a nuisance, and rather suddenly to a terrifying possibility with crippling results. I dared not land on my wrists, because that could be the end of my career and my ability to support myself.

After recovering from surgery, cardiovascular exercise just caused too much swelling and inflammation — for years. I found that counterintuitive, which means illogical and, for me, extremely frustrating.

Fast forward 24 years

And now, it’s now. The ongoing heat wave (and flash floods) are making my usual afternoon walks impossible. My body refuses to stay vertical when the temp is a stunningly humid 84 degrees F (28.8 C). This body-system and wet-bulb temps just don’t get along.

Meanwhile, my thyroid supplement is starting to take hold. This means that, while I’m not up to normal energy by a long way, I crave exercise like a junkie with healthy tastes.

The only time I can be outside is before 8 am.

It usually takes me until then just to get out of bed, because of dysautonomia.

It’s hard to describe the sensation of challenging your dysautonomia, but if you turn on a powerful electric milk-frother and throw that down your stomach, while putting your head inside a vice and trying to breathe through a sodden sock, as flesh-eating termites devour your limbs… well, you still won’t know what it feels like, but you’ll at least be in the right ballpark.

I have an agreement with my body where it will let me get up early for Really Important Things, like fasting lab draws and airplane trips; I just have to pay for it the rest of the day.

I decided that it’s time to move exercise back into that category and hope it adapts appropriately. This is going to be rough, but the skills I’ve learned might make it work.

The skills

First thing is, No Surprises. I think about getting up and out early, as I’m getting ready for bed the night before. I think about the early hush and the freshness of morning air. I wonder what birds I’ll hear. I look forward to it sincerely.

Next thing is, Lower Barriers & Eliminate Excuses. Water is at my bedside and clothes & shoes get picked out the night before. I don’t want to have to think about doing it, I just want to grease the slide out the door.

Third thing is, Wake And Ground Deliberately. Once my eyes are willing to open, I drink at least half my pint of water and then organize my spine (a series of moves and physical therapy stretches that make my spine feel properly engaged), and then get all the way inside my skin (tapping down the top of my left arm, up the bottom of the left arm, down my side and front, down the front of my left leg, grab my foot until I can really feel it top and bottom, tap up the back of my leg, over my kiester and up my back and side; then, do exactly the same thing on my right side; then, tap up my neck — tapping on alternate sides — and use my fingertips over my face; rub through my scalp to get all the scalp muscles awake and ready to encase my skull today; and nice big sigh to turn over the air in my lungs.)

It sounds rough for CRPS, but I’ve been doing this for a long time and my brain knows what to expect. That’s important.

It also works to apply pain cream instead of tapping. It’s fine to skip over bits that don’t let you touch them. It’s fine to use a very soft touch, or stroke with something soft like a bit of plushy fabric or a feather.

It’s about input for the skin that helps the brain remember and rehearse where your body is in space. This is an important tool for pushing back on CRPS. It literally recaptures parts of your brain that have been turned into pain-sensation, and makes them remember how to do body-sensation instead. Worth pursuing and persisting with.

After this, I check in and, if body says it’s willing to try, I swing my feet onto the floor. I finish my water there, sitting on my bed.

I Check In as I Sit Up, nicely hydrated and with no surprises. If all is well, I get up and check in with my legs. If they’re OK holding me up and flexing, then I climb into clothes and shoes, and head out for my walk.

I planned my walk the night before (“no surprises” really helps the autonomic system to cope!) so there’s nothing to figure out as I grab my phone and keys and head out.

I adjust the distance I’ll go depending on how I feel when Im out. Today, I got wildly nauseous when I was about at half my intended distance. Vomiting tears open my saggital seam, that tough band that forms the middle crease in a 6-pack. (I vomit very hard.) So, I sat down and smoothed down the texture of my thoughts until the nausea passed.

Then I did some t’ai chi and qi gong, focusing on moves that stabilize the autonomic nervous system and ending with a “microcosmic orbit” series I always enjoy. (Let me know if you’d like video of any of that.)

Once my internal system was going better, I bowed out and returned, snapping pretty pictures on the way.

Summary & Conclusions

I’ve gone about the same distance both days, though yesterday’s walk took less time — I didn’t have to sit down. Today’s walk was more up & down. I think I’ll stay on level ground the rest of this week and see how that goes.

I’m now fighting the urge to go to sleep. I fell asleep at 8:30 am yesterday, after getting in from my walk, and slept until 1:30 pm. Waste of a day, IMHO.

Maintaining a diurnal cycle (regular sleep/wake and eating times) is very important for taking care of yourself with dysautonomia. So, now that my thyroid is not completely in the toilet, I’m going back to fighting to keep hold of the day. I want some life back.

To be perfectly frank, I’ve spent most of the last 9 or 10 months just waiting for each day to pass in the hope that another day will be better, and if not, at least I’ll be closer to the right treatment.

Enough is enough.

It’s hard work, but so is life: I’m starting to take back my days. That starts with regular activity, because nothing re-regulates a dysregulated system like regular activity.

And I do love the morning!

My job as a complex chronic patient

Isy / July 6, 2023July 8, 2023 / activity, adaptation, care team, critical thinking, loved ones, mortality, nutrition, perspective, radical presence/radical acceptance, realpolitik, self-care, story, what works

My first nursing job was on an HIV unit in 1991. We were in the 2nd wave of the med mixes, so there were some treatment options. We knew which precautions were necessary, and when.

Those precautions had been newly dubbed, “universal precautions”. HIV was the last global pandemic that had a powerful effect on ordinary patient care, legislation, daily activities, travel, everything. The lessons we learned were rolled so thoroughly into our lives that we no longer think about it.

Anecdote from the front lines..

At that time, it was all rather new. Old nurses were afraid to go near any patients on our unit. We had about 80% novice nurses, an unheard-of proportion on a specialty ward in a nationally-ranked hospital in a major city! We had to pay attention, and we had to learn fast.

Because we weren’t abandoned enough already…

Our rather young nursing preceptor had bone cancer in her knee. She went in for surgery as soon as the last of us (me + 1 other) got signed off on training.

But wait, there’s more: as soon as she came out of surgery, she wrote a message insisting they pull the plug on the machines and let her die. Husband supported that, in tears.

Considering how close to hysterical she’d gotten 3 days earlier, when I tried to dig in my heels and tell her I was not ready to practice autonomously and might need more training after her op; and how strenuously this woman — who’d done little but put me down for weeks and express frustration at how slow I was — now insisted I was ready, really ready; and considering how improbable that post-op scenario is, in so many ways… I think she had planned it well in advance. Most expensive euthanasia ever.

Her 2nd-to-last words to me were: “Change your socks. They should be white. Bright colors are not professionally appropriate.” And gave me a fierce look. She came back for a nice goodbye, telling us we were all “good nurses” despite our occasional touches of color (a laugh and a nudge for the main transgressors, me & a fabulous fellow), before she turned and left the unit for the last time.

She’d been working on me about the sock thing for weeks. Slouchy cotton socks in gem-bright colors were still fashionable; drove her crazy.

She was the only one who hated them. The patients, the other nurses, and my immediate supervisor thought my gaudy ankles were delightful. I was referred to as “the one with the socks” and everyone knew. (I also introduced the fanny pack to nursing life. Nobody had heard of it before I showed up with a white, wipe-clean, bleachable one. You’re welcome.)

It’s possible that I got a packet of white socks, as a gesture of respect to that tough young woman… which quickly got grubby-looking, as white socks always do on me, and thus were eliminated from my wardrobe as not being professionally appropriate.

… That was largely irrelevant, but I’ve stopped suppressing my storytelling urge. There are just too many; they leak.

Back to the job of being a complex chronic patient.

It’s surprisingly logical — it just takes a long time to figure it out. I hope this will shorten that course for whoever reads this! There are 3 key principles to follow, and 3 sets of jobs, one for each kind of person involved in each case.

Three key principles

My patients on that ward taught me a lot about how to navigate hard, complex, intransigent illness. There are 3 key principles:

“Grandma was right” kinds of things: fresh air, activity, nutrition, sincere friends, learning all you can — they make a huge difference.
Find the light, or life, in the cracks. Doing #1 makes that a lot easier.
Communicate with others in the way they need to be communicated with.

That can be a tricky one, but I’ve got a lot of material on it. Some of it is here on this blog. And one day I’m going to complete and organize that collection of communication tools. (Any day now…)

Three different sets of jobs

It’s important to remember that you can’t do everything. I learned that (and keep re-learning it) the hard way.

There are specific realms of responsibilities which the important people in this situation have:

My job.
Significant other’s job.
Provider’s job.

They’re perfectly straightforward.

My (the patient’s) job

A note on terminology: some object to the word “patient” as dehumanizing. I’ll let you mull over what it means to think of someone who needs care as less than human. I don’t.

I’m sticking with the word “patient” here, because it describes a person who has specific, unavoidable experiences with alterations in their bodies, care providers, and whatever health-care system they have access to.

Complex chronic patients have a depth and breadth of experience with these things that most people simply can’t imagine — and nor should they. We wouldn’t wish this on anyone.

So, as a patient, my job boils down to this…

Take care of myself; take care of my responsibilities; take care of my relationships. All this includes having fun and seizing little joys!

Manage my illness. This includes: meds, nutrition, activity, learning about the disease and how to manage it, self-care (whatever that turns out to include, but it always includes pacing: alternating activity and rest.)
Track important signs, symptoms, and changes, and document them meaningfully.
Share this info with providers and significant others when it makes sense to.
Find useful ways to communicate with significant others & care providers about changing needs and abilities.
Make all my appointments on time, every time.
Contact my Dr for anything I need their support with: changes, meds, treatments, info.
Get through the days one at a time. (Thinking of the whole span of my existence is not my job. One day at a time is plenty.)
Find life in the cracks: notice the little beauties, regularly do something I enjoy, stop and smell the flowers.
Make time for fun and happiness. It makes me so much stronger!
Be good to my loved ones, whatever that means and within my limits.
Know that I’m the subject matter expert on my body, and hold myself responsible for managing it accordingly.

Significant other’s job

These two principles can be used by people at work, at home, on the playground, wherever. Very simply, “believe me” and “avoid making this harder, whenever possible”.

Believe me

Nobody — trust me, nobody — can make this stuff up, and there are far too many expensively-educated people working on this for it to be imaginary.

If you can’t believe it, then try pretending you do for awhile, just to test the concept, and see how that works.
Learn about the disease. There’s good info out there and I, or my doctor, can help you find it.
If you’re really important to me, come to an office visit with me and ask the doctor your own questions.

Avoid making this harder

Communicate with me about changing levels of activity and needs. I hate to keep saying how broken I am, so let’s come up with a code to pinpoint the different levels of broken that I could be.

Then, I don’t have to talk about how close I am to puking or crying or passing out, you can know anyway, and we can get on with things appropriately.

That’s what I really want — to be as productive as possible for all the time that I can; to be as good a partner/employee/friend/family member as I can.

Provider’s job

Another note on terminology: I’m old enough to remember when physicians, who were relieved that good schools for PAs, NPs, and APNs were starting to flourish, advocated for the term “provider” as a collective noun, encompassing themselves and the advanced-practice professionals who potentiated their work and multiplied their efforts.

That worm has turned, and now it’s not so popular with physicians.

Please allow this old nurse to use the term with all the respect it originally included, in memory of the brilliant and capable physicians who taught me to use it as the inclusive term of choice.

The provider’s job (as of course you know) is threefold: keeping the larger view, providing appropriate care (of course), and providing info and guidance.

This is sometimes easier said than done, because every time I see you is a rough day. You hold more than the power of life or death over me — you hold the power of tolerability or pure Hell. Thus, it’s natural for me to be a little fragile, possibly overwhelmed, in our conversations.

I do my best to be prepared and “keep it together”. I want to make the best use of our time.

Due to the additional insults of pain and CNS dysfunction, I can be subtly or even grossly impaired when I most need to be responsive, intelligent, and clear.

Given all this, please know that your kindness makes a great difference in my life.

Here is what I hope for, from my providers:

Consider context. Notice where I fall in the statistical ranges and how might this affect my care; help me distinguish between reasonable vs. unreasonable efforts, as well as watchable vs. reportable signs/symptoms; steer me through that intersection created by my medical & physiological peculiarities in one axis, and the statistical probabilities generated by reams of studies and years of clinical practice on the axis which crosses it.
Prescribe appropriate tests, ancillary care (physical therapy, occupational therapy, speech therapy, and so on), and medications.
Respond sensibly and kindly to concerns about meds, therapies, and changes in my illness. (Fragile egg here.)
Let me know what I really need to know about my condition, meds, or treatment, before I leave the room (virtual or 3-D), so I neither ignore something important nor over-study and confuse myself. My responsibility to learn benefits from yours to inform me. Also, it helps me to know the right keywords.
Be the subject matter expert on the scientific and clinical knowledge-base for the illness I see you for, and be willing to figure out relevant context that my other conditions create.

See this article about just how fabulous an experience it is to have a physician who does all that. It’s such a relief and such a joy. Thank you from the bottom of my vital signs for doing what you do.

All 3 working together = best possible situation

When complex chronic patients can monitor and communicate effectively, prioritizing our care while keeping life in center stage most of the time; when our loved ones can coordinate around our limits, allowing us to be at our best, considering; and when doctors apply their staggering breadth of knowledge to our particular situations with attention; we have a fabulous chance of doing as well as possible.

I like doing as well as possible. I have a lot to give and I want to be able to give it — that said, my care comes first, last, and always; it’s the only way!

Thanks to significant help and support, good friends and loving family, and some real rock-stars on my medical team, I’m well set right now. I’m almost afraid to admit it, because I don’t want to rock the boat…

And here we are

There you have it: the 3 key principles and the 3 main jobs of living/working with complex chronic illness.

I know they are that fundamental, because I’ve had a few providers almost plead with me to come and participate in their patient support groups, specifically so I could talk about it with other patients.

Well, here we are, sharing this information all over the world! Send this article wherever you see fit. I’d love to know what your support groups think about it.

Patients, caregivers, loved ones of complex chronic patients, doctors, P.A.s, A.P.N.s and N.P.s… feel free to comment. This is about all of us, after all.

Why Pride means life

Isy / June 9, 2023June 9, 2023 / critical thinking, imp-possible, injuries & surgeries, loved ones, martial & internal arts, perspective, politics, radical presence/radical acceptance, what works

On my 21st birthday, I went out with a bunch of women friends, including 2 couples. All of us health-care workers. Drunk jerk got thrown out of a car right behind is as we stood on the sidewalk deciding where to go next.

He decided that us being out without a man, and clearly happy in our own company, was a terrible transgression. Then he noticed the couple vibes. Then he called us “a bunch of” d-word. Then he tried to kill one of the women in a couple.

Someone else saw him draw a knife. He went to slash her throat. Someone else pulled her back, by her arms unfortunately.

I saw him raising a fist to a defenseless friend, her eyes huge, staring at the fist.

Somehow I levitated between 2 parked cars and a couple meters of pavement in the time it took his hand to move another foot.

I landed in front of him with my arms raised in a blocking stance my Dad taught me at 9 or 10 years old. He said, “I’m teaching you to block with both arms at once, so you don’t get confused in the heat.” That worked!

The attacker looked stunned. Took a step back. I stepped back. He took another, one more, then turned and ran.

I ran back to the bar we’d come out of, passing a couple of delightful young men, shouting a warning: “There’s a man, with a knife, back there.”

I had no idea my left side was covered in blood pouring out of my face.

Those two precious darlings ran. Found out later they ran *towards* the attack, followed my friends’ pointing fingers, and kept him blocked in at the train station, where he had just missed the last train out. Trust me, it takes balls to be a queen.

When the back door of the bar finally opened, the barkeep peeped out and said, “Sorry, we’re clo — oh, dear — somebody get me a towel with ice in it!” He clamped it to my face and that was the moment I realized my left shoe was squishing with the blood in it and I kinda lost my cool.

I hammered on the brick wall with my bare fists, screaming “Never again! Never again!”

I had already been a female for 21 years, which taught me a lot about uninvited violence; had learned about the Stonewall riots; knew the horrific statistics of how often non-heteronormative women are attacked “to teach them a lesson”; and had started getting involved in “let’s all treat each other like frkn human beings & not torture and kill each other like it’s a sport” types of activism.

So. All that was behind that “Never again”. It was too much in my life already, and I was barely an adult.

When the cops brought the attacker in the bulletproof squad car, so I could identify him, I couldn’t see at first because his hand was over his face. Cop went around to the side to ask him to lower his hand. He turned sideways, and I saw the profile that had gone to sink a knife into the throat of a defenseless woman.

It seemed logical at the time that I didn’t want to fight the cops, one on either side of the car. I decided to go through the windshield instead. It was only bulletproof glass; between fingernails and fury, I saw no reason (in my state at the time) not to get through it.

A minute later, with drunk dude stark white and frozen with terror, one of my friends (an ER nurse) pulled me off the hood by the slack of my best black jeans (this was the late 1980s) now smearing blood on the hood of the car.

She and the cop looked at each other and chorused, “I think that’s a positive ID.” ?

While this makes a great story, the memory of it also makes it very, very hard to speak up against microaggressive b.s. because you never know where it will lead. Name calling can go anywhere. Being in a group is some protection but not as much as you might think. If I’d tripped on my gods-assisted leap across that distance, my friend would be dead, and her partner would not have been even acknowledged as a widow, and all of us would have been stuck with that harrowing memory with no tolerable ending.

I now have long hair and am not nearly as fit, so I have the leverage of obvious straight privilege more than I ever did before. (Not that I’m personally wedded to gender or orientation. Binarism is a bit weird to me, but hey, you do you.) My actual sexuality has been all over the map and is currently parked in Neutral: don’t have it, don’t want it. But hey, you do you — that’s the bottom line.

That language changes all the time. When I was an activist, at first “queer” was an all-embracing term, but then the language started moving to an acronym. In the move to acknowledge all the variety, that acronym has gotten unwieldy. The English language being the adaptable thing that it is, another word-based term will emerge to act as the modern umbrella term; that’s still in process.

You don’t have to like LGBTQAI+. If you’d actually read, as I have, holy books in an intellectually responsible translation, you’d find that the major ones are OK with it. God is OK with it, but you do you: just keep your hands to yourself.

You don’t have to support LGBTQAI+ businesses or like having LGBTQAI+ employees. If you check the stats, you’ll find that businesses with strong LGBTQAI+-positive policies and culture get more and better work out of ALL of their employees. A tolerant environment is very freeing to everyone, not just the nominally unusual! But you do you; just keep your hostility to yourself. It’s not OK to be hateful or spiteful at work.

You don’t have to want a LGBTQAI+ family. If you check the records, you’ll find that kids raised in LGBTQAI+ homes are just as smart & just as competent (and generally somewhat more adaptable) as anyone else’s kids. You do you; just keep specific laws off those bodies, because it’s no more your business than your sex, your private parts, your children, and your home life belong in other voter’s hands.

You do you. Let others do them. That’s basic humanity.

It’s not just LGBTQAI+ people who suffer for it. It really is a disservice to everyone.

Let’s get this crapshow turned around, because we really need to get together on issues beyond the personal, if any of our descendants are going to have a bearable future.

May 2023 on the Back 40

Isy / May 14, 2023May 14, 2023 / activity, adaptation, basics, brain care, care team, CRPS knock-on effects, imp-possible, loved ones, mortality, nutrition, radical presence/radical acceptance, self-care

In the spirit of this blog’s brief as a “user manual for complex chronic spoonies”, here’s a health update after another interesting year (my personal year starts in May!) with notes on medical support & the relevant self-care for each problem area.

Cultural note:

In American slang, “the Back 40” was (is) probably the least obvious & accessible parcel of a farmer’s land. Either a lot of work or no work happened there, it was hard to find the person doing it, and the effort didn’t show until afterwards.

Good metaphor!

Areas of life…

Mom (& TL;DR): 2+/3, it kinda sucks but I’m getting doctors involved and they’re good. Adjust expectations downward a bit, because this could take awhile to resolve.

Endocrinology

I got a med with a toxic-to-me ingredient (maltodextrin; it’s specifically inappropriate for people with low thyroid!) and that set me back in inflammation, pain, mood, and thyroid function. That’ll take some time to recover from, but…

=> I’m doing All The Things, mostly hydrating & waiting & antioxidants.

Plus a thyroid med I tolerate well.

Not having thyroid supplementation at all for 4 days (after 2.5 weeks of thyroid with toxic crap in it) set my thyroid recovery back further, but let my mood come back closer to baseline and gave me more access to memory & coping skills.

=>More waiting, plus vitamin A, licorice root, and Maine seaweed for the iodine.

And lots of sleeping.

Dr:

I have an appointment with a good endocrinologist in June, which gives me time to look up his articles & see how he thinks, while brushing up on my endocrinology. (Being a passive patient doesn’t work well for me. Too much complexity & too little margin for error. I hope he can cope with a collegially-minded patient.)

G.I.

I tried heirloom corn flour, because I love masa and grits, and the industrial kinds of corn are too hard on me. (Pain, mood disruption, bit more brain fog.)

Well, it took longer than regular commercial corn, and it took making it a staple & eating it a couple times a day, but it turns out that organic heirloom corn can still do that to me. So, more waiting & more hydration, but after Day 2 of No Corn I’m already a little better. Yay!

Good news is, I’ve consistently been able to eat *enough* overall that my body’s starvation response is calming down! I’m no longer gaining weight daily (which is what my body does when it’s starving). I’m able to fit into my biggest clothes that *aren’t* stretchy, another yay.

=> I find that 1200 kcals/day is the functional minimum on any given day. Getting up to 1600 is good, much more stabilizing.

Organic, free-range everything with plenty of olive oil. I have had skillful & compassionate help with cooking since November, and it’s been absolutely life-altering — for the better, which makes a nice change!

Dr:

I’m seeing my GI doc this week. I sure hope he doesn’t retire soon.

Brain & pain

Not so good. It’ll change, but there’s no knowing just when. I’ve got a UI design & documentation project which I badly *want* to do, but I think the better part of wisdom is to write up what my training & experience leads me to envision, and find others to help do the work. Trouble is, when I get to the computer, I don’t want to write it up, I want to just do it… ADHD fail, so far!

CRPS-specific

The bone pain is having a party in my feet, legs, & pelvic girdle. Skin in my arms & legs is more burny, and it’s getting annoying. That feeling of my brain envelope being hot (not something that happens in a normal body) is a frequent occurrence.

=> Eliminating the corn (which spikes up my neuro signalling) and stabilizing my thyroid should help that a lot.

I hope.

Fibro pain

Yeah… May didn’t used to hurt like this. My joints feel like the surfaces do a quick “squish” and ooze steam at every impact.

=>Antioxidants, hydration, pacing, thyroid… and time.

Dr:

I’m seeing my primary on Monday and will ask for a referral to Brigham & Women’s pain clinic to see if we can get a better handle on this.

Ehlers-Danlos Syndrome

Ironically, the more I read about EDS, the more it explains a lot. I haven’t got enough understanding to opine further, but feel free to look it up and put your favorite links in the Comments.

Everything is in a “chase the symptoms” mode until then, and chasing the symptoms means that I don’t get things I otherwise need to manage pain and inflammation, because they trigger spasms and cause tissue tearing, both of which sound like EDS issues.

Welcome to complex chronic illness, where “competing needs” is more than a metaphor — it’s a way of life!

Dr:

I have 2 appointments, one to prep before genetic testing of a more arcane kind than I can get myself, and one to discuss results. The first of these is in November. We made that appointment last fall, so that’s really the best we can do.

Life

Best time of year is here. I hope I can get some recovery & remission, as I usually do in the summer.

The pain & brain fog keep me indoors more than I’d like, especially with the high pollen count making the histamine & inflammation situations worse. (Competing needs again: I love being outside.) It’s just too much to try to mask over all this, and I’d rather not stand out for the wrong reasons. Again.

I’ve been using my rower for exercise, when I can. That’s better for the bone pain than walking on pavement is, and I’m surrounded by pavement.

Major events

Sadly, I just lost an old sailing buddy to his illness.

Worse, I may soon lose a dear & longtime friend to hers, one of my sisterhood which formed around 2010, forged in the fires of the improbable Hell of having CRPS while being intelligent (ding!) female (ding!!) health-industry professionals (ding!!!) seeking effective care for this insane disease (DONNNNNG).

Some things you just get through and hope for the best.

Love makes everything else bearable — and that makes bereavement a stone b*tch.

On the other end of the spectrum of life… my honorary nephew announced I can expect to be a great-aunt this summer, and the first bundle of crocheted baby-gear is in the mail.

His papa, my widowed honorary BIL, is traveling the world with his skills, hard-won insight, and upright down-home charm to spread the word about what *really* constitutes good patient care. The world is becoming better for his work and I couldn’t be happier for him or prouder of his trajectory!

*Huge* yays!

=> I’ve discovered that the way to avoid emotional whiplash is to think about just one thing at a time.

Some of us are *always* living in interesting times.

Conclusion

I’m going to crawl back under my rock & lurk until all this hydration & waiting does some good. Time doesn’t do everything, but it does give other things a chance to work.

Take care of yourselves, and when you can’t do that, take care of each other. (((Hugs))) to those loved ones & spoonie-compatriots who want them.

The limits of mitigation: dishwashing

Isy / April 12, 2023April 12, 2023 / adaptation, basics, CRPS knock-on effects, documentation, food allergies, loved ones, perspective, radical presence/radical acceptance, what works

This article is utilitarian. It provides descriptive terms for people with similar experiences to use in communicating with their doctors, payors, and loved ones.

It discusses the impact of an ordinary household task, and explains why doing such an ordinary thing could, in fact, be unthinkably difficult for people with certain neurological issues, even though their arms appear to function reasonably well.

It aims to mitigate some of the effects of the invisibleness of pain- and sensory-related disability.

Washing dishes is a problem. It’s never been fun, but it has been satisfying, because, talk about instant gratification: you do something and things are immediately better! I liked that!

Hoping for more autonomy, I recently got a great pair of washing-up gloves. Here’s what I’ve learned.

The problems with washing dishes are:

– The way water over the hands, which are rich in nerves, intensifies sensation and creates constant tactile input that multiplies every other sensation. I think it also has an effect on electrical conductivity in my hands and, as we know, the electrical conductivity in my hands is a complete mess anyway. This is where my CRPS started.

– Hot and cold temperature variation. This activates the C-fibres in my hands and forearms, the nerves that transmit hot and cold and itch and pain. My body has trouble distinguishing between those sensations. So as the water changes temperature – down to fractions of a degree, which most people would not even be aware of – my nerves and the blood vessel activity that the nerves can command are all just having a little meltdown.

– Because of histamine issues and allergies , most of my dishes are glass or metal. Both of those substances have a strong impact on my tactile sensation. (They’re hard to touch and uncomfortable to use, but I have to use them.) I think this has something to do with how extravagantly they conduct temp and, in the case of metal, electricity. Both of which translate to discomfort and pain and impair my ability to control the motion of my hands. This muscular impairment is a characteristic of long-standing CRPS.

So, between having to juggle all that sensation, all that pain, all that vascular/tactile disruption, and the loss of muscle control that comes with it, washing dishes is a real problem for me (cf. taking a shower. Another post for another day.)

Think about dropping glass and fumbling knives, and you’ll see what this means in practical terms.

My cat has learned how to respond when I break glass. She comes to the edge of the splatter zone and meeps to check in on me, then sits out of the way but in sight, supervising the entire process from picking up big pieces to sweeping the rest and finally getting up the tiny shards with large damp rags. Only then does she enter the zone and check my work! She doesn’t let me forget how important it is to clean it up properly, and comforts me considerably during the subsequent recovery time.

I got some dishwashing gloves, hoping they would help. What I’ve found is:

– They eliminate the water contact – until my hands start to sweat. Since they are necessarily an artificial substance, this happens pretty quickly because that’s how my skin responds to manufactured surfaces. The term for this is “sudomotor reflex.”

– They reduce the temperature variations, but not as much as you’d think. I’m astonished, myself, to find just how sensitive these hands are to tiny temperature changes. This relates to “thermoregulation” and “thermosensation” problems in CRPS.

– They do help somewhat with dexterity because they’re nice and grippy. However, they don’t fit well because they’re a generic size. With the quick sweating and the temperature changes, the dexterity problem really isn’t resolved.

– I don’t have to come into direct contact with the glass or metal, and that does mitigate some of these issues. It’s just that they’re not the only issues.

The peculiar nature of peripheral neuropathy with CRPS makes this pretty much unwinnable.

So I guess I still need someone else to do my dishes.

If anyone can think of a way to rinse and load a dishwasher and then remove the dishes when they’re clean and dry but still solves the problems of water, dexterity, glass and metal … I would be happy to hear it.

I’m posting this not to whine, but because it can be so very hard to articulate these profoundly abnormal sensory experiences, and I know I’m not the only one to have them. As always, please feel free to link and copy, and I’d prefer it if you point to this webpage if you put this in print or online. Thank you so much! In the end, if you need to use it, then just use it. Spoonies unite.

Speaking of spoonies uniting…

The fact that this post got written without me going into a complete fugue state and wandering into traffic, or somewhere equally unlikely, is thanks to Elle and the Auto Gnome, who kindly took dictation — and kept me from wandering off in an effort to avoid thinking about this any longer than necessary! It’s a ghastly situation and my usual coping method is to articulate a ghastly situation once, and then focus on workarounds, spending as little further attention as possible on the ghastly thing itself.

Elle and the Auto Gnome blogs here.

She pointed out that being able to articulate these problems is darned rare, so I took the hint and we did this together.

May it be helpful to others in similar straits!

More on environmental insults on a hyper-reactive system

Isy / January 30, 2023January 30, 2023 / activity, adaptation, CRPS knock-on effects, imp-possible, moving/traveling, neurogastroenterology, nutrition, radical presence/radical acceptance, self-care, tools and techniques

I’m dealing with a mold-spore exposure in my home that’s only somewhat mitigated, and can’t reach a better state until the weather allows me to throw open all the windows for a week or so, to allow the super–low-tox coatings to dry and cure.

Honorary sibling & excellent friend Cougar came over to help with a related errand. I was singing my way through my tasks, which I don’t normally do, but apparently it’s sufficiently “on brand” that it fit right in with his expectations. I told him that I was going through a phase of illness where eating anything is treated by my body like a personal insult, and, in addition, the all-body pain and inflammation were through the roof. He said, “I never would have guessed. Your behavior doesn’t show it at all.”

Woo hoo! Yay me. We humans can have real personality distortion due to horrible pain, and when I can manage myself that well in the teeth of a flare, I take an inward bow and award myself a shiny gold star.

I got the Big Craptasms one by one: Ehlers-Danlos Syndrome (type not yet known), CRPS/RSD, dysautonomia, fibromyalgia, Hashimoto’s thyroiditis, mast cell/histamine activation problems, gastroparesis & sluggish gut. All of these require major lifestyle changes.

I could handle the rest, even the CRPS (given all the good neurotransmitter stabilizers we have these days.) It’s the worsening histamine stuff that’s really driving me crazy right now. I’m reacting to everything.

Reactions don’t stop with itching skin, itching eyes, pouring sinuses, and wheezing. Oh no. That would be too easy.

Reactions set off aaaaaall the other clowns in the circus.

So, here’s what that looks like in my case:

My tissues are more brittle and unstable, so I have to be extra careful doing things (and I’m always doing things. Did I mention being mildly hyperactive?) That’s the EDS.
The body pain of the CRPS I don’t want to focus on long enough to describe, but getting my skin sensitivity under control before bed is kind of a big deal.
The fibromyalgia is like a big spiculated cloud of aggravation that my body wandered into and can’t find its way out of.
The thyroiditis means I have to stay off cruciferous foods (the best winter veg, sob sob) or get back on the thyroid supplement/pituitary see-saw that I’ve struggled with before; meanwhile, the thyroid-driven struggle of having one day and one night in every 24 hours is taking up a lot of planning and will-power, especially at 4 or 5 am when I haven’t been able to go to sleep yet, but still have to get up in a few hours in the hope that my body will get the clue. With most sleep disruption issues, it’s important to fake it ’til you make it.
Gastroparesis is tightly tied to mast cell reactivity for me. That’s also so loaded right now it’s best for me not to think about it, especially since it’s almost dinner time and I have to give my gut some work.
It ties in with the fact that, if I don’t eat enough, my body creates more fat “to get me through the famine”, in that lumpy, painful, inflammatory pattern that just makes everything harder.
Also, the mold fragments themselves create a reaction in my body that’s a whole bucket of nasty by itself: more brain fog, more indigestion, more inflammatory-patterned everything.

And I’m one of the lucky ones. This could be so much worse!

As I think about life generally and my life particularly, I think about travel — as essential to me as breathing is to many people. I don’t need as much of it (obviously) but now and then, it’s essential. I have loved ones, few of whom are near; I can no longer go visit them. There are beautiful sights I’d love to revisit, and more I’d love see for the first time. There are fascinating people I’ve not met yet — some of whom I’ve loved dearly for years.

Yeah… but no.

I can’t stay anywhere, because everyone everywhere uses things that either smell or out-gas or both; moreover, at this end of the reactivity bell-curve, what sets me off might be fine for another who’s similarly sensitive. It’s a total crap-shoot.

Plus, mold. Largely invisible, uniquely ubiquitous above the 37th parallel, usually harmless — but astonishingly bad for me!

If I’m going to go anywhere, I’ve got to customize and control the environment I sleep in, at the very least. Sleep is when the body does its housekeeping and cleanup; it’s as if all the doors and windows are thrown open and the sensitivity gets turned up to 11 — any bad stuff that goes in then, goes in much more and makes things worse. The regular cleanup gets interrupted. It all becomes more crisis-manage-y than housekeeping-y. As you can imagine, in hyper-reactive systems like the one I have, that’s a real mess.

This has been creeping up on me for awhile, and I’ve blithely ignored it because gee freaking whizz, isn’t there enough going on??

I just need a moment to process this.I had to give up a visit to friends this week, because my immune system crawled into the blender and hit “frapee”. (I’m nursing a charming case of stomatitis with both canker and cold sores; my lymph nodes are creating topography a bit like the bumpier parts of Death Valley; and I’m having all visitors stay fully masked with windows wide open, because I’ve got nothing to fight off further pathogens with.)

Because I gave up that trip, I get to sit here and think about what a non-delightful level of fragility I have to plan for as I go forward in my life.

So, on the one hand, this is great information and I clearly need to know it, in order to avoid making myself sicker.
On the other hand… Oh FFS, life! Really? — I mean, really?!?

When I’ve gotten the particle-board in the kitchen coated, I hope that will buy me a couple of years of being able to stay in my adorable little flat without further toxic exposures. I’m benefiting hugely from this stability, and the location can’t be beat. I love it and I’m grateful. With the semi-permanent fix in place, I can probably recover quite a lot of the ground I’ve lost — although of course there’s no guarantee, and the best-case scenario involves many months of recovery and being very careful about avoiding other toxic triggers for a couple of years, until the mast cell “bucket” can drain.

Thanks to the diligence and care of my 2 new helpers, this is an attainable goal. Pheee-yew!

Beyond that, I’ve got some thinking and learning to do. I may revisit this subject of controlling my environment while on the go, when I have anything useful to say.

Competing needs vs. Layered needs

Isy / January 21, 2023January 21, 2023 / basics, care team, food allergies, imp-possible, nutrition, radical presence/radical acceptance, self-care, what works

CW: food & size & related topics.

Many things are coming together and my soul is taking warmth and strength from the concatenation of care. I’m incredibly lucky — even blessed — and I feel my good fortune with all my heart. It’s a great, and unforeseen (by me), turn of events, after decades of raw struggle.

One of these blessings takes the form of a gifted young man who takes my complex & often conflicting dietary needs as a delightful challenge, rather than a terrible curse. His work with me is a hugely encouraging capstone to,

A lifetime of food-nerdery,
A career of nutrition-nerdery (not the same thing),
Decades of increasing dietary stringency,
Years of gastrointestinal fuss.

It turns out that addressing underlying nutritional needs can re-shuffle metabolic activity so that former limits are a lot less limiting.

I know, right? Who knew???

I’ve been dealing firmly with mast cell activation & histamine reactivity, by keeping everything I eat super fresh, freezing it in portions immediately, reheating in the microwave (which tastes a lot better than cooking it in the microwave in the first place), and keeping the dishes & utensils squeaky clean.

After doing this for awhile, it turns out I can eat brassicas again (cauliflower and broccoli, 2 of my favorite veg) without my thyroid flipping me the bird as it passes out.

I feel profoundly rewarded.

Competing needs: no brassicas; lots of winter veg.

Layered needs: calm down the mast cell activity & histamine responses, and my immune system is perfectly happy to take brassicas on board without trashing my thyroid in response!

Also, I was gaining weight rapidly around the time this kitchen-magician showed up; since my diet was so limited at the time (homemade parsley buns, homemade blueberry buns, farm-frozen chicken, and sprouted lentils, with only olive oil & salt for flavoring) it was very easy to do a calorie accounting.

It turned out I was in hardcore starvation mode, getting only 700-1000 kcals/day. That’s not enough. It kicked my cortisol into high gear, which is overdriven anyway due to pain & dysautonomia, and manufactured excess adipose tissue from (apparently) thin air & bad grace.

I’ve roughly doubled that calorie intake; with my kitchen-wizard’s help, I’m getting loads more veg, too, which for me are a sort of cure-all — whatever is wrong with me, it eases up if I get more veg.

Keep in mind that *any* consequence of starvation is unhealthy. Losing 80 pounds to starvation is even more horrifying than gaining them. It hurts less, but it’s more dangerous to kidneys and system function.

It’s a peculiarity of our modern sensibilities that gaining weight due to starvation is absolutely invisible, because being fat is considered so repellent (the word “gross” translates as “fat” — that’s a strong linguistic clue), that shaming & blaming is the default response, even — especially — by physicians who should know better than to disbelieve, shut down, and further humiliate their starving patients.

This obviously needs to change.

My clothes fit more naturally and my feet & legs hurt noticeably less 3 weeks on. So, that’s much better!

Competing needs: more nourishment; fewer calories & more activity, I’m told.

Layered needs: adequate calories, so my cortisol can stop screaming about starvation and let my body work better!

There will probably be a lot more about the details — why are all my veg heavily processed or overcooked? What’s the recipe for those buns? How many diagnoses am I working around, anyway? How do you get onions in when you can’t go near them raw? — but that is, as it were, food for future posts. There’s a lot more info in this topic. It’s possible there are a few books in it.

Putting words to the problems

Isy / January 13, 2023January 13, 2023 / basics, CRPS knock-on effects, food allergies, imp-possible, money, nutrition, radical presence/radical acceptance, self-care

Thanks to wonderful people, I’m getting help in my home. Holy hosannahs, people, it. Is. Amazing.

My part of the bargain is to get the state to step up to the extent I can persuade it to, hoping it covers the cost.

Ever since governments realized that keeping people safely at home is much cheaper and more productive than warehousing them, sensible states work to make that possible.

Naturally, they have checklists and formulae to determine what they’ll provide, based on neat cookie-cutter notions of disability, developed in tidy rooms by people with steady pay, good benefits, and a remarkable degree of job security.

I mean… I… ay, ay, ay.

TW: Describing the usually silent reality

Fellow spoonies can guess at the blind horror it was to climb right down into the mess of this life — where getting through the day requires me to gently ignore as much as possible — and blurch it all up, but thanks to an excellent psychotherapist who knows how to pull me off the ceiling, it happened today.

Mom, it’s okay if you skip this! It’s clever & apt, but grim in parts. Keep in mind that it’s not the whole story, just the relevant hard parts, because it’s written to the task of getting money out of the system.

I separated the “Why it is like this” from the “What it is I need” and I thought this might be helpful to share with others, since I’m far from the only one who has to do this. Hope it helps.

Letter stating what my helpers do

Dear Gate Keeper,

Here is a discussion of my needs and the help provided. Thank you for taking the time to look into this.

Cooking:

Diagnoses affecting my intake are numerous and often mutually contradictory (e.g., insulin resistance & gastroparesis.) Inadequate nutrition makes everything worse, as you know. Multivitamins can only do so much.

I mentioned “no shortcuts”: this means sauces, dressings, snacks, everything, has to be made from scratch, thoroughly cooked, and frozen fresh in order to be safe. This is largely due to mast cell activation syndrome (everything super fresh & clean) compounded by the inflammatory reactivity of fibromyalgia, CRPS, dysautonomia, and multiple food allergies and sensitivities which already existed (making the cost of failure high), plus gastroparesis (so everything has to be processed and cooked.)

Everything has to be frozen in serving sizes, because the mast cell reactivity and the downstream consequences of failing to account for that are so devastating. Then those many containers have to be washed and put away. Please see housekeeping about why this is such a big deal.

Shopping: pushing a cart is like holding onto a rail wrapped in barbed wire while every bump is like a blow to the frame driving the barbed wire deeper. Not having to go through that is important for being able to do anything else in the day.

Here’s what Person A does for me:

Shopping: drives me there, handles cart, keeps us on task, remembers what I forget.
Keeps kitchen clean, functional, organized.
Keeps fridge and freezer ditto, which I couldn’t do for years (temperature, metal & glass contact; see below.)
Works closely with me to understand dietary limits and possibilities. Much learning, checking, & creative thought involved.
Preps, portions, and stores fresh food.
Makes sauces, dressings, and desserts; stores them in usable portions for me to dress my meals with.
Cooks main meals and snacks meeting my stringent needs.
Serves me a fresh, hot meal every time he’s here. Everything else I defrost in the microwave.
Portions and stores everything.
Cleans the endless parade of dishes.
Provides apt advice on how I can make my nutrition easier to access and more satisfying.
Every bite has to be cooked (gastroparesis & g.i. disorders) so this means considerably more work and more dishes.

Housekeeping:

Anything involving contact with things that affect transmission of temperature and electricity is agonizing. CRPS and its peripheral nerve activity are essentially a matter of disrupted signaling, and these are hugely exacerbated by contact with metal, glass, running water, any water at anything other than body temperature, vibration (which is brutal – imagine a full-thickness burn happening inside your tissues down through the bones) and other sensations which would ordinarily not even warrant notice, but to systems like mine are limned, imbued, and soaked in pain. Not just ouch or even agony, but a pain that causes the motor nerves themselves to fail without warning of any kind. It’s very distracting and worrisome, as well as uncomfortable and risky. It can be dangerous, as the many glass objects I’ve broken in the past year attest. Dish gloves don’t work for me due to tendon problems and what the gloves are made of.

I’m a fall risk, due to the dystonia and the repurposing of motor nerves to carry more pain. (I can supply excellent peer-reviewed articles to support all of this. If I forget to provide them and you want to see, please let me know.) And, because of the many sensitivities and reactivities I live with, packaging and serving my food in glass dishes is essential. Cleaning them is mandatory. There are no better options.

Due to the combined effects of hyperflexibility, hyperreflexia, complex regional pain syndrome and the nerve damage and “windup” that goes with it, histamine intolerance and the tissue effects of inflammation, and other factors… movements beyond very moderate range have to be deliberate and controlled, or I risk injuring myself again.

This means that things like folding sheets, reaching, or making ordinarily repetitive motions put me at risk of injury, with disproportionately bad results and disproportionately long recovery time. Amidst all this, sensory sensitivity has developed across the board. (I was an emergency nurse, mid-distance runner, hiker, rock climber, and I liked the meditative nature of housework. This current reality is hard to live with, but it is what it is.)

Here is the list of tasks Person B does for me:

Recurring serious attacks on dust and mold in the home. I havent’ been able to get treatment for these allergies to a successful degree, and they impair me badly. Dealing assertively with these environmental insults is key.
Change bed. [I’ve deleted the bit about the worst incontinence. You’re welcome!]
Vacuum floors (vibration, auditory, grip)
Vacuum baseboards, corners, overheads vs dust.
Move furniture to vacuum underneath.
Damp soapy wipe down of baseboards, shelving, & all the surfaces vs dust.
Wash curtains vs dust
Mop floors vs dust in cracks
Clean bedroom carpet and rugs in house vs mold and dust
Deep clean bathroom, bedroom, and kitchen, to keep mold levels below functional threshold.
Spot clean (I drop things often)
Fold laundry
Dishes all the time. They have to be washed really well, because of the mast cell issue.
Errands: trips to P.O., pick up meds, get cleaning products, stock up on masks, and hopefully outings when it’s warmer.
Reminders: get meds, fill med organizer, change towels, etc.
Laundry: bedding, towels, clothes, rags. I have a small apartment washer that we have to use exclusively, due to horrible reactions to commercial cleaning products.
Clean asthma gear & vital-sign gear.
Equipment maintenance for air filters: changing filters, wiping down, checking seals, etc.

It’s hard to realize, until you‘ve been through it, how very helpful it is not to be tortured by ordinary tasks of daily life. I appreciate your willingness to look into this.

Please let me know if you need any supporting documents.

Thank you so very much for your time…

Seeing, as in looking at, stars

Isy / August 1, 2022August 2, 2022 / basics, brain care, Covid-19, documentation, imp-possible, loved ones, mortality, nature, perspective, radical presence/radical acceptance, reiki/meditation, self-care

I saw a whole lot of stars last night. Good for the soul, that.

I’ve been taking this opportunity to be in the experience of life without having to explain it, or articulate reasons to anyone outside my own skin. I had almost forgotten what that’s like. With very bright and articulate people in my life, it’s hard to get that in my personal life. Their need to understand is borne of pure love — they worry, because they’ve seen me through some rough times, and in order not to worry too much, they need to understand in their own minds what’s going on in this mind over here, which is in a completely different person. (Mom, you’re in good company with my lot! <3)

I’m in a lot of “thin end of the bell curve” categories, so this can take some doing: INFP (about 2-4% of the population, last I heard), serendipitously rather than linearly accomplishing (about 20%), and ADHD female (goodness knows, but the proportion seems to be growing as the markers are better understood), in addition to the weird requirements of all these illnesses — pretty much guarantee that anything normal won’t work, no matter how carefully I plan and execute.

This is the second summer in a row where things have not gone according to plan, so much so that a new term somewhere between “not according to plan” and “WTF just happened” needs to be coined to express it. I’m beginning to think I should just take this as a new life pattern, since the switchbacks tend to heal the dribbling wounds of layers & layers of PTSD. (Well-managed PTSD is not the same as resolved PTSD, although the most dramatic difference is on the inside.)

My friend and honorary BIL Ron wound up with massively metastatic liver cancer because 2 years of pandemic disruption and lousy treatment from LA’s indigent support system (which is a criminally bad system, worse than war-escaping migrant camps and most internment camps, according to the UN) left his early, localized, treatable cancer as an undiagnosed blurch on a CT scan which he had a few months before the pandemic was identified.

His care was denied because there weren’t enough staff or open beds. He was killed because of, but not from, Covid. When you think about maskless people and Covid deniers, think about treatable, localized cancer turning into a deadly and agonizing bloodbath for people like Ronnie.

Yeah… I’m not bitter… much!

Folks, this is not a drill. It’s not imaginary. It’s a fast-evolving pandemic in its early days. Read up on the Black Death for a little perspective.

A couple months ago, as people told themselves the pandemic was “settling down” right before the peak of record-setting waves of contagion and death (check the data, not the ideology) Ronnie bent down to pick something up, passed out, and woke up in hospital getting the third of eight units of blood. Then he found out over half his liver was lost to cancer and that treatment would only buy him a matter of months.

He opted to skip treatment and make the best of his remaining time.

He wanted to go fishing, so he set his mind to get strong enough for one last boat trip. His family proposed bringing him home to Northern California, where there’s glorious fishing in all sorts of waters.

Long story short, the appalling facility he was in was so good at losing contact information, that his hospice social worker didn’t realize he even had family until I had the option of including a gift card with a care package I sent from Amazon, and I included four names and numbers. Then things started happening.

If you’ve got someone in a facility, send them a card! It’s documentation that people care, and nothing happens in health care without documentation!

I never thought of it as anything other than a nice gesture, but turns out it’s a whole lot more: It’s evidence that they’re worth saving. ÷O

Put your number on it if they’re in bad shape, so the facility has someone to call. Atrocious that this should be needful, but hey, welcome to modern America! o_O

OK… maybe a *little* bitter.

Since I was about ready to have him kidnapped to get out of that stupid facility, we had contingency plans up the wazoo to get him out of there and home.

Even longer story short, it turned out that the only feasible option was to drive him home, which was a 2 person job and only one person in that elderly and health-challenged family could do that, so I changed my own plans (plan is a 4-letter word anyway) and got the soonest ticket I could.

As he listened to this planning conversation, Ronnie smiled from ear to ear with tears streaming down his face. He could take in how much he was loved and wanted, and he was going home to a slice of paradise to be surrounded and supported by the care of those who loved him.

Important note here: he already had this information, but he also had his own layers of damage which made it hard to let the information in. That resistance was there for a reason. You can say something to someone all you want, but if they aren’t equipped to accept it, it won’t go much further. There has to be a big enough change in themselves and their circumstances for those scars to shift, so the info can flow.

Ron was able to put aside everything that kept him from being able to accept that information, and he had, as the wise social worker said, “a moment of pure happiness.”

The following day, his condition deteriorated. We updated our plans to go visit and hope for the best.

The morning I was supposed to fly out, he was gone.

I did my quiet-inner-voice thing, and it said “go anyway.” So I did.

Bodhisattva oath

I’ve been contemplating the distinction between working the Bodhisattva vow and being a doormat (or codependent, as we call it now), off and on, ever since I discovered the concept when I was 12 or 13. It’s been an important part of my work of dealing with the last couple decades of harrowing illness, poverty, and systematized abuse as a patient. It’s become a regular topic recently in my meditation class. This is a big deal and an important point to consider.

The difference, it seems, is about self-care and responsible boundaries. These are particularly key for people who are women, healers, and in a vulnerable situation; it may not have escaped your notice that the wording which defines these terms was developed by men who had quite a bit of support in their work, and such people need a lot less protecting.

It’s healthful for people in habitual authority/access/power over others to embrace a practice of profound and selfless compassion. It gives them more insight and calm.

Those of us whose ground state is based on acute awareness of others require a more nuanced approach.

There are techniques which allow a diligent practitioner to pursue the Bodhisattva vow over the rim of what appears as boundaried behavior without psychological damage, but they only come after many years of serious training and discipline with qualified supervision. So, people like me have to be pretty darned careful how we proceed.

In short, I was in two minds about my own reasons for coming, but I yielded to the quiet tidal bore of my inner voice and took that flight.

Serendipity

I’ve landed in a beautifully imperfect place among people who wear their glorious sweetness and relentless flaws in flowing symmetry. From Ronnie’s kin, I’d expect nothing less.

Above all, I realize it’s not my bathtub to soak in and not a set of problems for me to fix. I’m just here as a welcomed guest and loved part of this extended & protracted family system.

This is a big deal.

There’s a lot of work for me to do (administrative nonsense, since death and life are both business matters; my trip will be paid for) and that’s healthy, because it’s easy for me and a real boon to the family. Healthy boundary there.

There is a lot of soft, verdant ground for me to walk on; a ton of stars spilling across the sky overhead; a cornucopia of Isy-friendly food pouring out of the greenery on this well-kept land; and my allergies have backed off considerably. My ex has put my health needs absolutely first in every consideration and the rest of the family is happy to support that. Definitely healthy.

And me? I’m not over-explaining! It’s amazing :D! I just quietly take care of my needs and appreciate everything that I *can* partake of. Good boundaries there, too.

I’m learning, carefully, again, how to be present. How to unlock from anxiety without letting go of my real needs. My phone is nearby and in signal, but usually off. That’s healthy too, right now. It’s a kind of technology break, which my battered and hyperactive brain is probably long overdue for.

I’m also bereaved in the presence of others who are also old hands at bereavement. It’s a peaceful thing. It feels curiously wholesome, even as grief and mortality are shredding sorts of events. Ronnie and all our late loved ones are very present in their very absence.

I could natter on about the wheel of life and possibly even spout some Buddhist wisdom about interconnectedness and emptiness, but to put it in words is to miss the point. It’s an experience. All you can really do with an experience is to be in it and allow it to be part of you.

So that’s what I’m doing. And there’s real healing in it.

For some things, no explanation is needed because, at root, none is… oh I don’t know… possible?

Anyway, I’m OK. I’m doing the things and being the me and accepting the limits (including transport) while appreciating the strengths (like interconnectedness) and feeling very secure and centered and remarkably peaceful withal. This is good. And if my phone is off, be assured it would be on if I needed it. Right now, the stars and the green and the peace are healing me, and I’m simply letting them. <3