Fun week: rib injury rehab

Isy / / activity, basics, imp-possible, injuries & surgeries, perspective, radical presence/radical acceptance, self-care, what it's like

At the ER…

Packed out to the last couple chairs in the waiting room.

I fell in my garden and landed on a rib… T7 I think.

Insert Adam & Eve joke here.

I laid there in the sun for half an hour (with a friend on the phone with me). It didn’t help enough to let me breathe properly or be able to drive safely at all. My Dr’s nurse thought it best to come in for an x-ray.

Schrödinger’s injury:

Could be fairly trivial and my body is having a meltdown over it, or could be “thank goodness she hasn’t punctured a lung” time — but I’m betting on the former, because I just managed to get a deep enough breath to ease the air hunger. It’s only (😒) been 1:15 since I fell.

UPDATE:

Bent, not broken LOL This is particularly good news because these bones are problematic about fractures.

I get *one* good hit from the *one* narcotic available to me, and I’m on it now. Waiting for the lidocaine patch to kick in.

I’m about to eat something comforting & cash it in for a few days.

Recovery time is 2-6 weeks. Real specific. Fk that. Pain is life so let’s see how hard I can push respiration & recovery…

Tomorrow.

2nd UPDATE:

This is worth passing on: if you figure out how to get into the correct position, lying *on* the rib in question reassures the primitive brain that there’s nothing inserted into the thoracic cavity. All that soft sensation all around. The bodymap fills in with tactile reassurance.

I must be on the mend. Half a dozen ten- cent words in one sentence.

Anyway, the drama is over, and now I just buckle down to healing as fast & well as possible. Could be so much worse. Even when stupid stuff happens to me, I’m fortunate 🙏💖

3rd UPDATE:

As soon as I knew u wouldn’t have to deal with healing CRPSed bones, I told myself, in the ringing authoritarian tones I reserve for my own system, “we are going to heal from this as quickly and securely as possible.” I didn’t get any lip, so went with that assumption.

The trick is rehabbing without triggering windup or creating further injury.

Yesterday, as predicted, I worked on breathing. I think we’ve got nearly half the lung volume back, just gently working the margins and backing off when the painstarts to bite.

Today, as promised, I started stretching on the same policy. “Melt the ice, don’t break it” as my old sifu used to say. I could take my own zipped jacket off just now! Woo hoo!!

I hope to be able to drive short distances by day after tomorrow. I expect another week before being pretty close to baseline, but hey, it gives me something to do. (I’m on a deadline because I don’t want my body to think this is the new normal. Should be ok.)

I thought up a rollicking song this afternoon. It was pissy and testy as to the words, but very jolly as to the tune. I went to write it down, but fell asleep instead… A great loss to the world, I’m sure! 🤣🤣🤣

As soon as I knew u wouldn’t have to deal with healing CRPSed bones, I told myself, in the ringing authoritarian tones I reserve for my own system, “we are going to heal from this as quickly and securely as possible.” I didn’t get any lip, so went with that assumption.

The trick is rehabbing without triggering windup or creating further injury.

Yesterday, as predicted, I worked on breathing. I think we’ve got nearly half the lung volume back, just gently working the margins and backing off when the painstarts to bite.

Today, as promised, I started stretching on the same policy. “Melt the ice, don’t break it” as my old sifu used to say. I could take my own zipped jacket off just now! Woo hoo!!

I hope to be able to drive short distances by day after tomorrow. I expect another week before being pretty close to baseline, but hey, it gives me something to do. (I’m on a deadline because I don’t want my body to think this is the new normal. Should be ok.)

Rehabbing aaaall the ribs…

They’re ganging up on me 😂

They’ve splinted together nicely over the weekend, which I spent gently stretching and breathing.

Good news: I can reach forward and to the side! I can fill my lungs almost 90% of normal with pain meds on board!

Problematic nonsense:

Can’t hold anything while doing so, or it will snuggle up to gravity.

“Eff you, Isy” component:

The individual intercostal connective tissues have banded together, glued by the intracellular garbage generated by the healing process, so the left side and left chest wall spasm as a unit when I move wrong or (gods forbid!) sneeze.

Sneezing is epic. I’m taking extra antihistamines cuz wow, let’s not do that again!

Plan:

Tomorrow, I will load up on antihistamines, Tylenol, and muscle relaxer, take the bus to my garden, and do 5 times more work than feels right and about 10 times more work than feels good. It’ll involve overriding the primal body signals about “this is causing damage” because the glued-down tissues are the damage.

Why TF…?

Because that’s the quickest and healthiest way to bust loose all this glue and get my left arm and left torso back into service.

I know this from bitter experience with my old sailing pal the physical medicine & rehab physician, Dr Carwile LeRoy , who got me to bust loose a tailbone injury years ago.

I had him to cuss out back then. This time, I’ll have no one but myself to shower bitter expletives on. Let’s see how much of a responsible grownup I can be about pushing myself hard enough. I’ve got scheduled downtime for a couple days afterwards.

I’ll watch Mulan tonight. That fires me up for physical endurance and exercise every time.

Windup, not in the athletic way

Isy / / basics, definitions & descriptions, injuries & surgeries, meds/drugs, radical presence/radical acceptance, self-care, slice of life, Toe, what it's like

I forgot that I posted an earlier version of this piece. At the time, I didn’t know how long it would take to recover.

It’s ok, though; nobody has read the earlier version yet. 🤣

My life is Tetris. Logistically, medically, attentionally, and furniturely — it’s all Tetris.

Keep an eye on the last word in that series.

There’s a tall metal piece of furniture that’s supremely helpful for drying sheets on, and if you lower it to earth it becomes a water-resist Sunny Obsidian Surge rowing machine.

Excellent piece.

I recently put colorful tape on the bottom end because it had to be moved 2 inches out from its old position and I knew the color would register out of the corner of my eye (my brain responds well to color).

Tetris.

While speaking over my shoulder — which made my peripheral vision irrelevant — I slammed my foot into it.

Despite having 2 people to mask for, I didn’t mask so much as lean over so they couldn’t see my face. I pounded the doorframe a bit (this rower is right by a door).

So much for the immediate reaction. I hobbled to my bedside where all my gear is. I slathered it with magnesium oil (magnesium blocks a chunk of pain transmission) and then, when I could touch it, emu oil (which is a pain-reducing carrier oil that pushes stuff into the tissues).

This was great because, bit by bit, it went from near-blackout pain to simply, y’know, a throbbing nightmare that slowly began to take shape and allow me to work out what to do.*

I put sturdy shoes on, not because it felt great but because my feet needed to feel protected.

I swung my foot up onto a couple of pillows on the couch. Felt the shimmering windup go up my leg and through my hips, lighting up my piriformis, which has always been a bit of a diva. The active CRPS patches in my hands, wrists, and shins all pitched in, singing the song of their people.

I think of pains as having voices, and sometimes their singing drowns out other sounds. Sometimes it’s just a descant to whatever is going on. Sometimes it’s a baseline running below everything else.

Occasionally, the pain just screams.

And now the muscle failure is creeping in, so I have to put down my phone and just listen to something loud enough to drown out this chorus.

All things pass, and, eventually, so did this.

The magic trick

I’ve been practicing resting when I’m tired. I’m 60 now and it has taken up to this year for me to have any real peace with it. Good thing, too, because it allowed me to spend enough time in bed, diligently and gently, for my nervous and endocrine systems to stand down again.

It only took a couple of weeks.

 

* “What to do” differs for each of us. I can’t take pain meds except Tylenol, which typically gives me about 5-10% relief and sometimes that’s enough to let me cope. NSAIDS trigger a body-wide mast cell reaction which makes everything hurt in a whole new key. Demerol makes me violently psychotic. Other narcotics paralyze my gut and, annoyingly, don’t help my pain. Same goes for weed. Ice makes everything worse with my pain, for tiresome CRPS-malfunction reasons.

So, most of my pain management is what one friend describes as “off-road”, because the health care system doesn’t provide it and hasn’t studied it much. It’s all from my understanding of the physiochemistry of pain transmission, studying the ways CRPS changes that game and working out how to push back, decades of networking and sharing tips with fellow painees, and believing my repeated, reliable, consistent results over my own assumptions.

I hope that this blog provides useful tips to others stuck in similar situations. A lot of us bloggers think about how we can be the resource that we needed when we were newer to this.

History of pain management

Isy / / basics, brain care, science, self-care, tools and techniques, useful links

Someone on Reddit asked how people managed pain before our modern era. It’ll surprise nobody here that I had a lot to say about it.

Another lovely soul asked me to provide links to more info on “this”, and by “this” I assumed they meant central pain, which was the topic of my previous comment.

Here’s a capsule reply…

Bonfire throwing fine sparks across a horizon in deep dusk. This is what it feels like in my head when my brain is burning freshly from a new overwhelming event.
Image CC A-SA by Simpsons Fan 66

Given how exquisitely unique each nervous system is, understanding it is a matter of developing a baseline of practical knowledge then learning how individuals respond to these underlying issues in their own case.

You’re in for serious study to answer your question:

– Best, fairest, most comprehensive and yet readable summary I’ve ever found of my primary condition, which is a template for central pain diseases:

crpscontender.com/crps-primer/

– Blogs, in English, discussing and describing toolkits (mental and practical) for individuals getting their particular centrally-pained body systems through their lives:

https://elleandtheautognome.wordpress.com/ Science oriented, with scales and tools discussed.

https://livinganyway.com/wp/ Slice of life with information embedded inline.

https://princessinthetower.org/ Full of practical suggestions.

If you want to go further into the medical stuff, you’ll find links at the bottom of the CRPS Primer, in the first blog I linked, and at crps.org. It’s medically absolutely fascinating. It’s just awful to have it, but here we are. The trick is figuring out how to arrange life within your parameters and then get life and light back in center stage as much as possible. That’s a very functional attitude with chronic pain.

Full disclosure: One of these blogs is mine.

Central (brain & spine) windup, from inside

Isy / / activity, ANS and fight-or-flight, CRPS knock-on effects, injuries & surgeries, radical presence/radical acceptance, self-care, what it's like

People with pain windup, prepare to feel validated.

My life is Tetris. Logistically, medically, attentionally, and furniturely — it’s all Tetris.

Keep an eye on the last word in that series.

There’s a tall metal piece of furniture that’s supremely helpful for drying sheets on, and if you lower it to earth it becomes a water-resist rowing machine. Excellent piece. I recently put colorful tape on the bottom end because it had to be moved 2 inches out from its old position.

Tetris.

While speaking over my shoulder, I slammed my foot into it.

Despite having 2 people to mask for, I didn’t mask so much as lean over so they couldn’t see my face. I pounded the doorframe a bit (this rower is right by a door).  There was silence from the other room.

So much for the immediate reaction. I hobbled to my bedside where all my gear is. I slathered it with magnesium oil (magnesium blocks a chunk of pain transmission) and then, when I could touch it, emu oil (which is a carrier oil that pushes stuff into the tissues).

I put sturdy shoes on, not because it felt great but because my feet needed to feel protected.

I swung my foot up onto a couple of pillows on the couch. Felt the shimmering signal of windup — where pain gets worse and more extensive after a blow, rather than easing off — go up my leg and through my hips, lighting up my piriformis, which has always been a bit of a diva. Spasms crept up my legs and flickered in my arms.

The active CRPS patches in my hands, wrists, and shins all pitched in, singing the song of their people.

I think of significant pains as having singing voices, and sometimes their singing drowns out other sounds. More often, it’s just a descant to whatever is going on; sometimes it’s a baseline running below everything else. Occasionally, it just shouts.

And now the muscle failure is creeping in, so I have to put down my phone and just listen to something loud enough to drown out this chorus. The fever-like prickling on my forehead and the comprehensive exhaustion are par for the course.

I just stubbed my foot. Nothing is broken. Were I healthy, I’d have saken it off in 10 minutes. This has trashed my day. This is a reality check, not an argument… this is what it’s like with longstanding CRPS.

This is the second or third “what it’s like” post, so I’ve made a new category for that. Not everyone wants to read it, and nor should they. Some people want to know exactly this, and this is for them.

I’ve put a lot of work into becoming more aware of my body because it’s easier to get leverage against faulty neurochemistry that way. Sadly, of course, dissociation happens for a reason and it gets hard to stay checked in — but I’m going to work on it.

Later.

I think today is for movies & grocery delivery rather than what I intended. I need a little constructive dissociation.

And that, ladies and gentlebeings, is windup, at least in me. It’s nuancedly different in everyone, but this is fairly standard — for this very nonstandard way of experiencing a normally trivial event.

Playing with my food

Isy / / activity, basics, CRPS knock-on effects, food allergies, imp-possible, moving/traveling, nutrition, perspective, science, travelogue

For audio version, tap PlayingWithMyFood below:

It’s almost impossible not to start this article with, “I used to…” So I’ll skip that and jump right in.

The first time I had swordfish, we were on vacation and the little restaurant was a rickety shack with a cockeyed roof and rickety grape arbors failing to hold their load up. It was on top of a cliff overlooking a bay of beautiful blue. (This was in the late 1970s. Water really was bluer then.)

The air blew soft in my face, because I was facing the sea. I’d teased my Dad about keeping his back straight even when he was slouching over soup. Everyone was pleased and peaceful. And I took my first bite.

I could tell, just by tasting it, that that fish had been swimming around early that morning. It didn’t taste like anything I could remember having before.

It was an amazing multisensory experience. It made me a foodie forever.

However, 4 years in the more environmentally challenging processes of Egypt followed that. The food filled a wider scale: the packaged white bread tasted like the feet of the men who kneaded the huge vat of dough the old-fashioned way with their shoes off, and the roadside falafel sandwiches on chewy baladi bread fresh from the oven behind the sweet-faced woman selling it at the roadside tasted like joy and love and home. With yogurt and tahini, please, thank you. (Not tomatoes, because hepatitis was in the water.)

Then there was the trip down to Upper Egypt on the train, almost 4 years later. By then, I was used to checking my soda for bugs and broken glass, and never bought candy with a damaged wrapper. (Well… hardly ever.) A certain appropriate skepticism had crept into my gleeful charging-in to the task of eating. I thought things through reflexively. That’s not an oxymoron.

The train went overnight from Cairo to Luxor. We woke in the morning ready for a good breakfast.

Egyptian eggs were small with shells so hard you could break something by throwing them. They had very yellow yolks as a rule, and I remember them as being delicious. I asked for a 3-egg omelet (which we used to spell omelette) with grated cheese. (“What kind of cheese do you have?” Shrug, “Just cheese.”)

I got all that, and a little bit more: a little cockroach cooked right in, a browny-black plaque on the surface facing me. The waiter put the plate down with one quick glance and no actual hesitation.

What good would screaming do? Honestly. I had 2 brothers and I had learned to save screaming for genuine emergencies.

I poked around while I thought this over. The egg had clearly, by its texture and color, been subjected to a good amount of heat; that roach was fried to a crisp, and I know that because I used my otherwise useless knife to check.

I mulled the level of certainty I could possibly have that another plate of eggs wouldn’t have a roach in it, only next time, concealed and not as close to the heat. Nope, anything could be in the next one, at this rate: tails, fewmets, broken glass… I mean, that waiter showed no shame. Not a good sign.

I poked around the omelette to see if there were any other surprises, other than a few scallions. Nope.

Decision: made. Elapsed time: two breaths.

I cut around the cockroach, moved it to the edge of my plate, turned my plate so the other side faced me, and dug right in.

It was good and I was fine.

I think I won the family award for aplomb that year. That was cool.

2026, with the G.I. doctor

I had a nice, relaxing meltdown with my g.i. specialist 2 days ago. My weight is almost as high as it’s ever been — not that I mind attracting small objects into my orbit or knocking over unstable furniture; that’s kind of fun.

As I told her, it’s the side effects. My right knee has developed new spasms and my low back doesn’t bear thinking about. I told her, “With CRPS we get bone pain, and the bones in my legs I’m going to cry about if I talk about them.” The added bust size is a disaster, and my postural muscles are fighting it out between stabilizing my hips and holding up my trunk; there isn’t enough to do both.

Multiple food sensitivities (try crossing FODMAP foods with gastroparesis diet with cardiac diet with mast cell/low-histamine diet, and see what’s left), a few outright allergies including gluten (which is rare), and gastroparesis complicating things have given me lots to learn about. I ranted about it, but I was really doing a sanity-check:

  • People with CRPS and fibromyalgia don’t get much muscle-wasting when we’re bedbound, unlike healthy people who get bedbound. What we do get is very few red muscle cells (the oxygen-dependent endurance muscle cells), and lots & lots of white muscle cells, depending on anaerobic respiration. (This has to do with how our circulatory nerves mess up circulation and the oxygen-driven muscle cells just go away and get replaced by anaerobic muscle.) This explains why I have not been able to get anywhere with cardio exercise at this point. Beating my head against a brick wall.
  • GLP-1s: contraindicated in med-reactive gastroparesis. I need my guts to move.
  • Metformin: attractive for its mast-cell stabilizing effects, but then it would be “bye bye, remaining red muscle cells”, because Metformin blocks their benefit from exercise.
  • The surgeries available for dealing with any of this are contraindicated because of CRPS, with its vascular and neurological complications.

It was a relief just to be heard.

And another thing: The CRPS Primer

I stumbled on this 10 dayd ago and I want to buy the maker dinner. I wanted to do this for 20 years and just haven’t been able to. This person has a kind of neurotwitchy that makes it possible to complete such a complex and challenging task, despite having this wretched condition.

The CRPS Primer is available from crpscontender.com. Buy them a coffee if you can afford it.

I plonked the whole thing into Word so I could highlight and annotate it for my own purposes. Highly recommend this as a learning tool. It’s good to think and add and argue with the writer at times, even when they turn out to be right. The references are extensive, though the gutting of the US Federal science library has affected some of the links. Check the Internet Archive’s Wayback Machine if you need to.

I won’t share that, or any other derivations, without clearing it with CRPScontender first, and that’s likely to take time. Nevertheless, they are serious about keeping it freely available to everyone at all times, so go get your own copy and play with it. It’s brilliant.

Air Quality and validating info you rely on

Isy / / adaptation, basics, critical thinking, mortality, nature, perspective, radical presence/radical acceptance, realpolitik, science

Let’s leap right over the climate arguments and just say that wildfires and their fallout (literally, since the particles “fall out” of the clouds) are a big deal these days.

If, like me, you check your Air Quality Info (AQI) and it’s all green & good, but you look outside and the sky is all yellow and kinda gross, it’s time to delve a little deeper.

AQI indicator showing all green with low pollution numbers
That doesn’t look like what I’m seeing — or smelling — outside my window…

1. Consider the source

Keep in mind that — rightly or wrongly — the United States’ climate science programs have been gutted. We used to lead the world on this, so, it’s a really big loss of data and validity. (Validity is determined by how carefully the instruments are set and cared for, then how appropriately the numbers that come out of them are used, and then how well the results are put into the public realm. Validity requires staffing, training, and lots of equipment. …Oh well.)

Since I’ve learned how badly climate science (which includes air science) has been de-funded, I’ve been waiting for the federal air quality data to get worse. Let’s see if this has begun.

Screenshot of the federal AQI page showing the message this site can't be reached
Funny… it was working yesterday…

This is not the only source of info, though. My state uses the national data and packages it for the state. Same issue as the first picture, though:

A map showing green over Massachusetts and stating that the AQI is 29 and safe for sensitive persons
Safe for sensitive persons? My stinging eyes beg to differ!

That said, let’s look at non-governmental programs that collect air data from volunteers. Usually, volunteers buy their air-quality analyzing equipment out of their own pocket, set it up, and attach it to the larger network of that brand or program.

What could possibly go wrong?

Unlabeled data, for a start.

Some people need to track their indoor air quality with these well-made air aanalysis instruments…  but can’t tag it in the system accordingly. This messes with the average air quality results, which are all pooled together, indoor air and outdoor air alike.

How do we know that?

Well, for instance, if you’ve got one Excellent reading of 6 next to another reading of 68 and Unhealthy, that’s a very good clue that one of those is reading indoor air:

Screenshot of air quality readings. Many are yellow with readings over 50 and 2 are green with readings under 10.
Two of these things are not like the others!

Also, people with sensitive/reactive systems may need to monitor indoor air pretty aggressively in high-pollution areas, where monitoring outdoor air is considered absurd:

Green AQI symbols with low numbers in a high-pollution zone
Ever been to Schenectady?

One resource I rely on for a sanity check is earth.nullschool.net, a gorgeous free online tool that shows the air, the oceans, and what they’re pushing around.

It’s such a great tool, we’ll look closer at it.

Earth

Here’s what it looks like, as of today:

Orthography image of Earth looking at the Americas, image centered on Brazil. It shows air currents and wind speed.
Pretty!

Touch the word “earth” to open or close the menu:

For our purposes, scroll down and adjust your settings to this:

Settings are Mode Particulates, Animate Wind, and Overlay PM two point five

PM stands for Particulate Matter and 2.5 is widely considered the riskiest particle size. It’s generated by wildfires, building fires, and volcanic eruptions. That particle size, in excess, is a real problem for anything with heart or lungs.

You can look at where they get their readings: usually 3 or more sources.

Let’s take a look at Schenectady on this setting:

It’s the lowest end of that yellow smear, in the green  circle.

That shade of yellow doesn’t correlate to an AQI under 30. If you go back and look at the Purple Air monitors for Schenectady, you’ll see what I mean about “the data don’t match the reality”.

Data don’t care if you like them. Facts don’t care if the data matches them. They are what they are.

If your health and function depend on knowing the reality, then it’s good to develop good tools to figure out what the reality is. I hope this helps.

In the end, my policy is simple: if the air looks wrong or smells bad, I want to mask up before going outside — and I bring my personal filter in case it gets worse!

And now… a little perspective

Skip this if you’re not up to it. It’s rough.

The American continents and their wildfires. South fewer wildfires than North — it’s winter down there.

Most of Asia, Australia, and the western Pacific Rim

 

Europe is bad, as are the horrific war zones in Ukraine and the Middle East… but sub-Equatorial Africa is absolutely aflame, the worst of all.

And it’s winter down there. WTAH:

 

Tracker and Brain Support

Isy / / adaptation, basics, brain care, communication tools, documentation, imp-possible, nutrition, perspective, self-care, tools and techniques, what works

You know when you need your basic tools or self-care tips and you just. Can’t. Remember?

Me too. Far too often.

Let me introduce my latest creation:

Half-fold booklet, titled Isy's Tracker and Brain Support. There is a note on the cover stating that the author placed this in the public domain in 2026. There is a typo.

Oops, I mean…

Same cover, with spelling edited

I’ve been thinking about this object for far too long, with lots of complications.

One day, some of those complications may make sense, but, right now, I needed to start with foundations: simple, legible, achievable tasks, with little boxes and numbers to check them off easily.

There are some things paper is better at. I’ve tried sooooooo many tracking apps that I’ve developed a riff about using them.

Apps for tracking allergies,

Apps for hacking maladies —

Working only 1 by 1.

Complex care is just no fun!

Apps for what you need to to buy

Or what to think of when you cry.

Apps for how your bowels go;

Apps for what your numbers show.

Some send info to your doctor!

Others keep it in a locker.

Turn-key claims are such canards

I have to customize them hard…

And therein lies a shocker.

Some apps let you set your own parameters. Great!! Can you write one in, drop it in the right spot, attach its rating box, and carry on?

Nope. Of course not. You have to walk through every blessed step of the engineer’s own logic, digging down to where you even have the option to create a custom line-item, apply its various associated characteristics either before or after you declare it custom (because each app is different), then figure out what system it should be rated under, and at this point were still a long way from done and we’re only 1 line-item in… so I exhale very hard as I vow not to throw my phone into the document shredder because it hasn’t done anything wrong.

I then delete the app and run cool (not cold) water over my wrists and pat it onto my forehead until the flames stop bursting from my nostrils. And then I try to forget the whole experience as completely as possible…

Until the next time, in the desperate hope that this time there might be an app worth one tenth of its set-up time.

With pain brain. And roaring ADHD. And allergies turning my mucous membranes inside out, which, as we know, is a great help (not!), all while my stomach is contemplating rebellion.

So…

I dug out and updated some old tracking sheets, which I once had printed up and glued into a tablet. (That was fun, and another effective format.)

I added a weekly tracker I developed later, and re-formatted it as a brag-sheet to feed the sense of accomplishment. (We’ve got to celebrate our accomplishments! Any reasonable opportunity for joy is key!)

7 days plus a weekly summary makes 8 pages.

This fits very neatly into printable formats.

So… I turned it into a booklet.

Photo of a half-fold booklet, day-tracking checkboxes for tracking pain, hygeine, eating, and self-care. The first page, Monday, is filled in with tick marks in many of the boxes.

And, on every 8th page, I get to pause and take credit for the week.

The booklet open to the 7th and 8th page. The 8th page has a weekly accounting of the hygeine, housework, and self-care of the week, with pretty fonts and a touch of color.

Fundamentals.

It is never too late, or too boring, or too anything, to work on fundamentals.

Here I go: back to fundamentals.

Isn’t that a sign of strength? 🤣

Not recommended – a poem

Isy / / communication tools, CRPS knock-on effects, Head, imp-possible, martial & internal arts, meds/drugs, philosophy, poetry, radical presence/radical acceptance, realpolitik

Tap here for the audio version.

This one is probably just for fellow painees. Others are welcome, but be aware it might be hard going.

How I got to now

Sunday: 2 hours of unexpected VOC exposure.

Monday: massive (for me) radiation exposure, over 1 h.

Tuesday (today): trigger point injections, 3rd or 4th I’ve had. Each is more painful than the last. This one was epic, and there’s nothing I can do about it cuz mast cell dysfunction and cytochrome (genetic) variants mean that pain meds give me all of the side effects and none of the benefits.

This isn’t about whining. It’s about naming a very bad day. Then, one breath or minute or hour at a time, moving on.

This poem fell out of my keyboard today in a comment on socials:

High on pain. Not recommended. 

Of all the highs that touch the skies,
Most humans choose from chemical vibes:
From mickey to fin, from plants to sin,
Delight is the evanescing disguise

That covers the deep unknowable scars
We tend to bear, when off to the stars
We go, and throw our pain in the bin
For respite or maybe transcendence– too wise
To hope for remission, that damnable prize
Of luckier chemistry, luckier lives;

Decades in,
Pain is untreatable, sometimes unbeatable,
And all I can do is rise… and rise…
And not give in.

 

Copyright me, 2026, the year Hell opened its maw for us all.

P. S. ~25 years in, I’ve tried everything and some days are like that. Heigh ho. Moving along…

Seeking Diagnosis if you don’t fit the Standard Medical Model

Isy / / basics, care team, communication tools, definitions & descriptions, documentation, radical presence/radical acceptance

Today’s post is a copy/paste from an answer I wrote in my socials. This is real life, not polemic.

“I’m a woman trying to get a diagnosis for my pain. I can’t understand the doctors, or they don’t understand me. Do I need to take someone in with me? I need the dr to take me seriously.”

Hoo boy, is this in my wheelhouse. Longtime (>25 yrs) pain patient, retired RN, ongoing patient advocate & educator.

You’re right: the pain of women (cis & trans) and people of color is dismissed, misunderstood, and under-treated horrifically. Know that this is unconscious reflex. It can’t be corrected by us, but it usually can be hacked.

How?

By presenting it as non-personally as possible. In other words, use:

A. Data & images to describe your pain & its effects,

B. Journalistic documentation for your experience with it, and

C. Others’ voices to support your words as you communicate it.

First, though, two key points:

Pro tip 1: Keep in mind “an averagely bad day”. We cannot plan for anything better.

When we’re describing how our pain affects us, we have to stick, not to our best or worst day (because they’re irrelevant; they’re exceptions) nor to an average day (because that’s out of reach without effective diagnosis, treatment, support, accommodation, nourishment, and rest), but to an averagely bad day.

This is our reality, and it’s what they need to know in order to plan appropriately and understand our needs.

If you describe any worse, you’re assumed to be faking it. The lack of conviction will show.

Any better, you’re actually faking it, but in the other direction.

“Averagely bad day” is the functional standard.

Pro tip 2: Recuperation and recovery is not calculated into pain description, unless you put it there. For instance, an activity that wipes you out for 3 days is different from an activity that knocks you back for a couple of hours, even if the reported level of pain is similar. Eff that tish!!

Calculate & document recuperation time.

For each thing that makes it worse, or each flare, document how long it takes to get back to your baseline. This is key to getting remission or even disease recovery.

A. Pictures & numbers

There are not enough words for pain in the English language. Also, as we know, they’re somehow just noise when coming from a woman, a “weirdo” (fill in any pejorative term), or a person of color. It’s wild, but there it is. We have to work around that.

Most of my tools are about getting their attention off of me and onto the pure information about my condition.

Which is interesting to them.

I’m not, and I handle things accordingly.

There are many ways to document the location, character, and intensity of your pain:

– Take pictures and mark them up in your photo editor.

– Fill out those “standard body” outlines.

– Draw your own outline of body or body parts and use that.

– Whatever works for you — just visualize it.

Make them look at the image, not you. Then they’re processing info, rather than being triggered by “woman reporting pain — must pretend it isn’t happening”.

We were all brought into the world by a way that typically causes a heck of a lot of pain to those giving birth, and sometimes I wonder if that primal event is what the denial relates to.

Functionality is the bottom line for any chronic condition.

The more you can put numbers to your levels of capacity at different times, the better. “Can carry 2 grocery bags 30 ft to the door today after meds, but yesterday I could only carry 1 without meds.” That’s an incredibly boring task, but it’s also an incredibly important indicator of function. It’s pure gold for the doctor’s notes.

I’ve got posts about doctor visit updates and timelines that demonstrate these tools in real life. For more info, go to the search bar or word cloud and search “documentation”. The site is a bit chaotic, but it’s all there.

B. Journalistic notes

Journalism answers “who, what, when, where, how, why”.

Who:

You’re the “who” who’s in pain.

Who sees, or is impacted by the effects of, your pain? Kids, colleagues, etc.

Who gave you a diagnosis, if any? Mention doctors by name and specialty.

What:

What hurts?

What makes it worse?

What makes it better, and is it significant or not?

What have you tried but had no benefit?

What’s affected? (Work, walking/standing, using the bathroom, carrying things like equipment or groceries, sleep, food prep & eating are the usual biggies.)

When:

When & where did it start?

When does it get worse? Better?

Does it have a diurnal pattern, meaning a consistent rise or fall through the day & night?

Where:

– Where, and how, does it hurt? Pictures are your friend. See A.

– Where do you go that makes it worse or better? Parks, forests, or print shops & other VOC sources can have an impact.

How:

– Describe the character of the pain: piercing, squeezing, burning, tingling, nauseating, etc etc.

– How does it limit you? Be specific. It helps to know that a gallon of water weighs 8 pounds, a bag of groceries about 10-12, a can of beans about a pound.

Whether you can lift without symptoms, how far you can carry, and whether you can manage stairs with those loads, are all good data!

How much you can do *safely and without needing recovery* is key.

– How long does it take to get back to your baseline after something happens? Calculate & document recuperation time. More on this later.

Why:

– If you have any thoughts about why it happened, mention them.

– If you have health-related gene scans or DNA analysis, it can strengthen the case for paying attention to you.

DNA rarely provides diagnoses, but clarifies ways you’re susceptible to types of illnesses, including pain diseases.

– If you have found any scientific articles, bring copies or send links.

C. Others’ voices

Others’ voices (especially deep voices from tall men) are more credible, somehow, and that’s messed up. Our lone voices should be heard! We are the experts in our own experience! But, well, here we are.

– If you don’t have a male friend or relation who is willing to be your “stunt man” and sit there exuding man-itude and occasionally repeating what you say, then there are other hacks.

A 3rd person in the room is key.

– A woman is excellent! She can sit there and quietly back you up, which is the baseline. She can ask if you feel like your questions were fully answered. She can ask if you understood what the doc just said, if it sounded like blah blah blah. She can ask her own questions, if you’re both OK with that. It’s your appointment after all; you can bring your own help.

You might (!!) see the doctor jump when she speaks, if they’ve forgotten she’s in the room. (It’s good for them.)

Pro tip: You’re a patient. Pride is irrelevant. It’s OK to seem goofy (though neat & well dressed,  if possible), as long as your needs are met and your care is appropriate and effective.

– It’s the law that you’re allowed to have a chaperone (yes, they use that word!) from the office in the appointment with you. Insist sweetly that you know it’s your right to have a chaperone with you, you want one, and you’re here a little early (be 15 min early) to allow them to find one for you.

You don’t owe any further explanation, though you can assure them the dr is fine, you want a chaperone anyway. (They’ll just have to work short-staffed until you’re done.)

Corner case: There’s an outside chance they’ll send in a security guard, which is inappropriate (they don’t have medical training and aren’t as trained in HIPAA) but it can work in your favor because, hey, usually someone tall & deeper-voiced. Greet them sweetly and thank them for being your chaperone — they need to know you’re to be protected, in their mental framework.

– You can ask about recording the visit, but be prepared for shock & horror. Being recorded is poison in some facilities because of legalities and liability concerns — and the way words can get twisted in court. If your doctor is fine with it, great! You can review it with your notebook and Merck Manual Consumer Edition.

There you have it.