Halcyon insomnia

Isy / December 2, 2025December 2, 2025 / loved ones, perspective, radical presence/radical acceptance

I’m having an episode of rock-hard insomnia. I’ve been having unpleasant dreams about an obnoxious person I used to know. I wondered if there was some concealed message in these recurring distasteful dreams, but, on reflection, I’ve concluded that my brain is just being an asshat. Sometimes it just is.

Having unpleasant dreams does cause insomnia for me; it seems I don’t want to go to dreamland when dreamland sucks. That seems fair!

So, I’ve dabbed lavender oil on my pillow, which calms my central nervous system and wards off nightmares. I’ve taken hydroxyzine, but didn’t even notice the window of opportunity, so that’s no good. I have one of my favorite books read by one of my favorite readers playing, but it’s just noise tonight.

Nope. Nothing.

I’m more relaxed, sure. Just nowhere near sleepy-bye.

What occupies my mind most of all, though, is how this period in my life, personally, is a halcyon time. Hard as it is in the shared realities of politics and funding, my personal life is filled with kindness, care, and love, more than it’s been in… oh lordy, let’s not go there. Years.

I adopted a young friend and they have brought their partner and siblings and pets into my life. Every time a new member of this clan meets me, my soon-to-be kid-in-law watches the exchange, nods, and says, “Everyone in this family falls in love with Isy,” as if it were the most natural thing and completely to be expected.

It’s an odd way to double your family size. I realize that. It won’t always feel so easy, because that’s life and being human. It’s simply that, after decades of grinding through this really bloody hard work of being alive with CRPS and all its atrocious friends & companions (dysautonomia and disability to start with and spiraling down from there), working through every challenge essentially alone for most of that time… this? This is different.

One of the kids is staying over to do my housework and help with shopping and cooking. They commented, insightfully, how glad they were that I experimented more with food when they were around.

I said that it’s easier because if I choose wrong and my fingers turn into sausages, I can still eat safely and recover without losing ground, because they’re there to take care of things. Also, my allergies are much better because of their work.

I said, “It’s safer when you’re here.”

I had one of those echoey moments when a bone-shaking realization hits you and you can either weep for the dreadful risks and hardships of the past or take a breath and be grateful for the present.

I took a breath.

So, although I need to sleep and I don’t want any more nightmares, I’m enjoying being awake because I can just wallow in this feeling that — after so long and so much — I find myself recognizing, with a rare purity, that these are halcyon days for me. Right now. I didn’t know I’d get such a wonderful time again, but I hoped for it, for many, many years.

I’ve had good times, don’t get me wrong! I’m good at finding joy and making the most of moments of connection and delight. I have friends and relatives I adore and can rely on. My life has loads of good.

It’s not the same as this feeling of bedrock beauty undergirding my daily experience. Does that make sense? It’s not just beautiful moments with loved ones making gorgeous spots among the daily crap. It’s a wholeness of greater safety and loving peace. The lovely moments string together until the brightness takes over.

As my adoptive grandchild sleeps in the next room, I find that I don’t have nearly enough fingers and toes to count all my blessings. I don’t mind being awake tonight. It’s a halcyon insomnia!

The Beast

Isy / August 27, 2025 / activity, ANS and fight-or-flight, CRPS knock-on effects, loved ones, perspective, self-care, survival

One of the characteristics of CRPS and some other longstanding brain-driven pain conditions is the occasional personality transplants which, especially combined with memory-holes and perceptual shifts, can really do a number on relationships. This situation is called the Beast. Medically, it’s considered part of the territory.

I’ve been absolutely smug about my aability to stay away from the Beast. Since regular psychotherapy is part of the gold standard of treatment for CRPS, I’ve prioritized psych care — from professionals who have a good understanding of trauma and PTSD, since actual specialists in central pain are so rare, and trauma/PTSD is a good model to start from. That care hasn’t been possible for most of the past 5 months, and I’m taking stock of how much I’ve lost in that time, now that I’m back on the schedule.

I can count on 3 fingers (now 4) the times I’ve been the Beast in ~21 years. (I’m fuzzy on my first ~4 years of illness. It was a blur.) The most recent of those times was due to a neurotoxic exposure. One was when I lived in a mold infestation I hadn’t mitigated yet. One was during a particularly hectic trauma period. The current one was after I decided to make an extended, extravagant physical effort in not-very-safe air. I really thought I could pull it off, and just rest afterwards.

But these are reasons, not excuses. I hurt people who didn’t have it coming at all. I injured relationships I care about deeply and intend to protect. Today’s event cuts particularly deep.

“Why would you do that?” is an unanswerable question. If you don’t have this shit disease, it can’t be explained. All I know is that I felt myself being pulled under, not recognizing fractured memory and wacked perceptions. I grabbed for a rope. Didn’t think what it was attached to, because I thought I was drowning.

Mind you (adds that inveterate shit, Sarcastic Sister), my feelings are such that I’d rather be dead than hurt my loved ones. But this is not the time to say that, because it makes no sense from the outside, in light of what they just experienced from me.

So… diligent psychoemotional tune-ups, reasonable pacing of activity, and a safe environment are not at all optional. That rubric is my best insurance against the Beast. What I know from seeing my long-term survivor cohort is that there’s no guarantee I’ll be able to avoid the Beast forever. So, I’m wrestling with this reality and not really wanting to be here for my life. (“I’d rather be dead than feel this way” was a state my late BiL and I could bond over.) Many of my fellow CRPSers know the feeling, and it eases my soul ever so slightly to know it’s part of this disease experience, and not because I’ve actually become evil.

I’ve done what I can for now. I’m off home for meditation time, if I can, and a familiar show if I can’t. I have to remember how to rest and how to push myself no harder than is good for me. I have to take recuperation very seriously and basically expect nothing from myself for a week. I have to manage this terrible storm of feelings in the absence of a stable central nervous/ endocrine system. I hope to have the chance to rebuild a couple of relationships. We’ll see if that’s do-able. Fun times.

I’m looking for some more positive message to turn towards or even something to lighten this a little, since the point of this blog is “living anyway” in spite of what this craptastic disease does to people. The only thing I’ve got to offer right now is the passage of time and the hope of some recovery… within the context of this horror-show snowballing around me, around us all.

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.

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.

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!

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

Update: using adaptation tools

Isy / May 29, 2022 / adaptation, brain care, critical thinking, CRPS knock-on effects, imp-possible, loved ones, perspective, radical presence/radical acceptance, self-care, tools and techniques, what works

Yesterday, it came naturally to be warmly present for V during a big event where I stood in for her, even at a distance of 3,000 miles or so. Gotta love technology for that!

Today, I think of D and the anticipatory grief is like a warm finger of current, pulling at me without tearing at my core or dragging my mind away. He’s here now, and everyone who cares about him is working on a graceful last chapter to his intense, vivid, improbably well-groomed life. (Yes, he’s quite a character!)

This recovery is not all perfect: after yesterday’s 8-hour social endurance event (a physical and physiological experience piled on top of a very neurologically demanding week) I woke up this morning with a pure dys-autonomic experience I haven’t had in a very long time.

On the very cusp of waking, as I first became physically aware of the real world, my body’s temperature-regulation mechanism dropped off the rails.

I suddenly got intensely cold, that bone-deep cold that makes the smallest touch of air feel like knives. Imagine full-body Reynaud’s, with added concertina wire. It’s amazing how cold my skin suddenly gets to the touch when this happens, after feeling just right at the moment I started to wake.

So, I did what I learned to do 10 years ago, when the dysautonomia really kicked in with this: I pulled my down duvet completely over me and tucked in every gap, wrapping it right around my head, and constructed a little tunnel just big enough to breathe fresh air through. (Fresh air seems to speed up the recovery period.)

Nothing I can do after that but wait for it to pass, as my regulatory thingies come to terms with being awake instead of asleep (one autonomic function) and being able to be at the right temperature (another autonomic function.) I know that it will pass, while my system creeps toward wakefulness.

Big shrug. The Nasty Cold Snap hasn’t been part of my day in a very long time, which is good!

This just goes to show that the physical/physiological impact of these flows of stress and anguish isn’t negated. Expecting that would be unrealistic.

They are manageable. That’s the point.

Doing those “brain first aid” things makes handling the weighty, current reality bearable. That means I’m still capable of several important tasks:

I can bring my tips and tricks to bear against the physical effects of this illness.
I can think my way through ordinary (to me) problems.
I can remember that things pass: the Nasty Cold Snap will pass, as the mental shock passed, as even terror passes when it’s allowed to.
I return fairly quickly to my normal frame of mind — which beats trauma-brain all hollow!

There’s still a bit more physical recovery involved, mostly giving my systems a chance to finish returning to their normal function and easing up on the extra weakness, reactivity, and pain.

But, basically, I’m OK. I’m able to show up for myself and my friends. That’s what it’s all about.

My point (and I do have one) is…

The skills I learned in psychotherapy really work when I use them, and I’m so relieved.

I want to make the point that psychotherapy is not “just like talking to a friend”, because our friends don’t need a graduate degree to be our friends. Psychotherapy is a professional-level, highly customized form of care, even if it feels relaxed (creating an environment where you can relax is one of the skills of a good shrink.)

Nor is it a passive process; the skills and concepts only work if you work them. It’s good to be heard; that said, it’s also good to remember that real healing involves relevant changes. The fun (??) part is, in medicine, we may influence the changes but there’s a significant random element involved in them; in psychotherapy, the client steers the whole process. While being an active, involved patient can improve outcomes in medicine, being an active, involved client does improve outcomes in psychotherapy.

So, there’s the core message behind this 2-part series, part of the ongoing “what works” toolkit. Psychotherapy works, when done properly and used diligently. Just like any other kind of care. It’s not magic. It’s skills.

Adaptation tools in use

Isy / May 26, 2022May 26, 2022 / activity, adaptation, ANS and fight-or-flight, brain care, Covid-19, CRPS knock-on effects, imp-possible, loved ones, mortality, radical presence/radical acceptance, tools and techniques, what works

As some of you know, CRPS & dysautonomia involve constant re-traumatizing of the brain & nervous system. Our brains have flows that can resemble that of people living with domestic violence, because the CRPS itself keeps waling on us physiologically, in the same way people who get abused are waled on physically and emotionally.

This is why psychotherapy is part of the gold standard of treatment for intense chronic pain generally, and CRPS particularly: it takes good, highly specialized training — and ongoing coaching — to keep re-claiming and re-training the brain, so it can climb out of the being-beat-up mode and stay in the this-is-what’s-going-on-right-now mode.

Since I take the view that “whatever it takes, I’ll do it” is the way to work with such an intransigent, mean-spirited illness… I’ve naturally been persistent about holding to the gold standard of treatment, and working hard to implement everything that works for me. (Let it be clear that, just because that’s such a nice pat sentence, it is a hard road and a lot of work. Sisyphus thought pushing the same rock up the same hill was a lot of work? He should try claiming & holding ground against pain-brain.)

I’ve had tremendously capable psychotherapeutic teachers & coaches, and my present providers are over the moon for me. I tell them, “Gee, it’s like this stuff works!”

***

It’s graduation season in this college-rich area, and there are a lot of transitions taking place. I had a glorious week of family visiting and more social time than I’ve had all year. It was lovely and absolutely wonderful… yet, for a dys-y system, it’s still a lot of work. Big emotions, even good ones, trigger big neurotransmitter flows and that takes managing.

Yesterday, I got set straight by a friend I’ll call V, which was terrifying (really don’t want to lose that one) but the relationship will be better for it.

Big emotions kick out dysautonomic systems, so I started up the brain-stabilizing routines. Cool.

Then, I found out that a friend I’ll call D had nearly bled out last week and was currently in the hospital with massively metastatic cancer. He was diagnosed with limited cancer right before the first Covid-19 lock down. You know what happened with hospitals after that.

So, because he couldn’t get any treatment when it was treatable, he’s now faced with pretty horrific options and chose to go for comfort care for a very short life rather than horrendous chemo with a poor outlook anyway. He was an extreme athlete and had a rough life as a wee wiry guy in the city, so pain is no stranger, but at his age, it starts looking stupid to chase more discomfort.

Because of wacky human stuff, we hadn’t spoken in quite awhile. I’m glad we couldn’t see each other during the call because I know I was crying from the first sentence he spoke, and I suspect he was too. He’s a live wire & a cheery sprite by nature, and he made me laugh before I made him laugh, so I’m happy to say he won that round. We sorted out some heavy material and he said very nice things that were good to hear.

After that conversation, my usual brain-care toolkit was useless.

The first thing I do is, “don’t rehearse, replay, or dwell on it.” This is because that’s how trauma-tracks get laid in.

The more it replays in the mind, the deeper the distress gets planted. So, whatever it takes to prevent another topic of PTSD from getting laid in, is what I do.

I do come back and evaluate the experience for lessons a little later, but first… got to let the flaring, blaring intensity wash off before it stains, so to speak!

When the anguish of 2 perilous-feeling conversations, atop a beleaguered and recently worn brain, keeps roaring back, my usual low-key books/ shows/ audio/ doodling distractions aren’t enough.

I sat back and reached for a thought I’d had recently. There’s nothing more stabilizing for those who can do it than… what was it again?

Activity. Bilateral activity.

In my case, taking a walk.

So, with my phone reading me an audio book at the same time (clever, right?), I pulled on appropriate garments and got my wobbling butt out the door, one foot after another.

Blaring replays started up often, but I’ve had practice with this technique, and I reminded myself that *now* I walk, breathe, and follow along with a silly story; processing events comes later, *not now.*

The blaring replays got quieter by the end of the walk, and by the time I was 2 blocks from home, I could just about bear to be in my skin again.

The combination of bilateral activity (walking, wheeling, and most forms of warming activity qualify) and the distraction of a plot to follow combined to get me through the first stage of harrowing. Yay!

I followed up on a task I’d committed to for V and meditated briefly on how to follow through on family notification for D, a task that couldn’t go further last night.

The first task wasn’t executed perfectly, but I saw the error almost immediately and rectified it.

The second task, the one for D, has yet to be tried: there’s no good way to tell someone their estranged, love-hate sibling is dying, but of course it must be done and it’s not my job to try to be perfect in an impossible situation, it’s my job to be an honest, kind, and diligent friend to both of them.

So, today, once my pills are down (i.e. in a couple of hours) I’m going to the Y for non-weight-bearing exercise (because there’s only so much walking my hips and legs will tolerate) and then do something involving lots of colors (either drawing or crochet) afterwards, while listening to another story… and waiting for D’s sibling to call, so I can relay the dreadful info.

Update:
D’s sibling called, took the news with love and tears, and we conferenced in D for an agonizingly beautiful conversation. Older Sibling being lovingly overbearing and Younger Sibling trying to keep one foot in what’s really do-able, with me occasionally calling time or translating across the gaps, felt very normal to me, even though it’s not my family.

Some things are just human.

So I’ll keep breathing. And drinking lots of water. And taking extra vitamins, because this kind of stuff sucks them right outta me. (Truth to tell, you’ve only heard half of it. It’s been quite a heckin’ week.)

I can see the point of fiddling as your own city burns. Wait, I mean, Nero was a hot mess and a dreadful person to have in charge, if the legends are true.

The point I’m striving (awkwardly) to make is that arty activity calms and settles the mind, so that even devastation is less all-consuming.

I think today is a colored pencils day, or possibly even crayons. Crochet takes more thought, and I don’t want to hold myself responsible for that yet. Besides, my arm tendons are acting up, so crochet isn’t wise.

Update, Part 2:
I think I’ll take some crayons to the gym. Is that allowed? XD

Feelings pass. It’s what they do.

New normals emerge, and we learn to live with what was once unthinkable.

Adaptation is a big job sometimes, but, well, here we go again.