Category: self-care

Quickies: How the doctor-patient situation is supposed to work

Isy / / care team, critical thinking, cultural context, perspective, Quickies, radical presence/radical acceptance, self-care, translating Medical Jargon into Plain English, what works

Chronic specialist care

Once upon a time, I asked my hot-shot pain specialist (I’ve had some real rock-stars) for something heavy-duty and intense (I forget what).

He told me that he wanted to stick with using current meds a little differently and upgrading my self-management skills, because I had a lot of years left and he wanted to keep something in reserve for when things got worse.

This doctor really understood long-term palliative care — palliative care meaning, you’re not expected to recover, so treatment means managing symptoms for as long as possible.

That’s not about dying comfortably, most of the time. It’s about living anyway. Being sick is not the end of life. It’s just a heck of a detour.

He was apologetic and sympathetic, hoping I wasn’t too dismayed and disappointed. I was delighted to realize this physician firmly intended for me to have a long and active life, and was asking me to step up to the plate to help to make it so. I don’t think he realized that, in that moment.

I said to my specialist, “My job is to figure out how to get through my days as gracefully as possible. Your job is to hold the long view for me, and figure out how to manage my care over time so I can get through the years as gracefully as possible.”

He looked at me in perfect stillness for a long moment. For someone who likes talking as much as he does (for good reason; interesting talker), that was weighty.

He asked, “Would you please come to my severe-pain support group and say that?”

Sadly, I really couldn’t drive safely that late and knew I couldn’t get a ride for it. (This was pre-pandemic, so, no remote possibilities.)

It’s possible that he was as frustrated and disappointed that I couldn’t come and say this to his patients as he had expected me to be about the medication. So, Dr. Saberski, this one’s for you!

Emergency visits

The purpose of the Emergency Department (or A&E/Casualty, for the other English-speaking countries) is to figure out if anything is going to kill or disable you in the next 24-48 hours. It’s a very specific remit.

Flare-ups of chronic conditions can creep into that remit, severe pain being very disabling in itself.

However, another condition of mine, gastroparesis, is not a great candidate. The heavy-duty pain meds in the ER are mostly narcotics, which rarely work for intestinal pain and, more importantly, make the intestinal paralysis worse. The anti-vomiting meds may not be better than what your doctor prescribes, although they may be different and worth trying for that reason alone.

ER nurses used to have an effective line in moving stubborn bowels. It seems this is no longer the case. It’s often considered a specialist task, not that specialists do it either. If in doubt, look up “soap-suds enema” and follow the instructions carefully. Stay near a toilet for the next 6 hours as your guts remember their job.

It’s vital to know that dehydration can be deadly or disabling, and the ER is exactly the place to go for treating that. So, if you can’t keep even sips of water down for a day or two, for any reason, and you’ve got the sunken eyes and play-dough skin (pull up a little fold on the back of your hand, and it stays there), the ER is the place to go.

Bodies can’t recover without water. Water really is life.

If your condition requires specialist knowledge to treat, but probably won’t kill you or further disable you in the next 24-48 hours, the ER can be bitterly frustrating, because thats not their brief and it feels unfair to ask them for it when they don’t have the training or funding.

However, it’s perfectly okay to phone them up and ask the triage nurse what to do. I’m an old triage nurse and I loved it when people were “on it” enough to call and ask. If they didn’t need to come in, I could tell them what to do and what to report if things changed. If they needed to come in, I knew they would do as well as possible and I could get them sorted and into appropriate care faster and with a rare smile on my face.

Being deliberately involved in your care is that powerful a message to send to your system. We can’t consciously control our systems, except in nudging things here & there, after specific training. We can deliver primal shoves with our basic approach, with how deliberate and mindful we are about our care.

Urgent care

Urgent Care is where you go if you’re pretty sure you aren’t going to die or be (further) disabled, but you do need same-day care.

Keep in mind that these providers do not have specialist training, but might be able to make a call to your specialist or be willing to discuss what you want from them. I said “might” — it depends on factors beyond your, or even their, control.

In the US, they usually can’t make referrals — except to the ER, if they find that you need further scans or a higher level of care.

It’s not fair to them to expect specialist care. That said, it’s not fair to you to have an inaccessible specialist. Lousy situation.

Primary (general) care

This person is supposed to be the ring-master who holds the ends of all the threads of your care. They’re supposed to take over your prescriptions (unless they’re actively in the “figuring out what works” stage) or you’ve got a specialist who wants to stay absolutely on top of things.

This is the person you usually call for coughs and colds, annual checkups, questions about whether you might need another specialist or different care, and when you want to talk over health care concerns, including confusion with how the system works.

They’ve still only got 5-10 minutes with you, but it’s time well spent if you’re confused or overwhelmed. As ever, note your issues and questions before going in, to make the best use of your time together.

One of the uses of those “talking” visits is for a medication review, one of the best uses of time there can be for us. See the Pharmacist section for more.

Pharmacist

These are the medication bosses. Their depth of knowledge of medications, interactions, side-effects, and alternatives is absolutely daunting. They’re the wizards of meds.

If you’re having symptoms that might be side-effects, this is who you ask about it. If you’re unsure about a new med or dont know what to expect, this is who you ask about it. If you’ve got genetic variants that might affect medication metabolism, this is who you ask about it.

Medication review

If you’re concerned at how many meds you take, talk to your pharmacist first. Then, with the notes from that conversation in hand, talk to your doctors.

This is called a “medication review” and everyone can do it annually, or more often if things are changing for you.

Pharmacists can’t prescribe, because the depth of knowledge about various bodies in sickness and health is the reason why physicians spend even longer in training than anyone else. Most of medical care is beyond medication. It’s why nutrition and self-care matter so much.

The body is its own unique thing and needs its inhabitant to be involved for best results.

In short

Medicine is really, seriously deep and complex. Each of these segments of the health care system is necessary, and none can substitute for the others.

It’s an imperfect system. It should be much better, but, heaven forfend, that might cut into enormous corporate profit margins. Patients, doctors, pharmacists, and every actual helping human has to work within the restraints of enormous corporate profit margins.

Hope this helps clear a few things up!

Quickies: Stubborn CRPS sores? TCM burn cream

Isy / / basics, CRPS knock-on effects, injuries & surgeries, Quickies, self-care, tools and techniques, what works

New series: Quickies. Short, practical notes, mostly about things to try for problems with CRPS, dysautonomia, mast cell & histamine disorders, etc.

Problem

I get what my grandmother would have called chilblains: cracks in the calluses around my feet and sometimes on my fingers. Nasty, uncomfortable, and — because they’re surrounded with thick walls — hard to heal.

Option

I’m an old nurse. I know a lot about healing wounds of all kinds. Nothing worked, at all …until I tried Ching Wan Hung, in the copper-colored packaging.

Ching Wan Hung:
Different manufacturers but similar copper packaging

It’s a traditional herbal product with Chinese cinnamon, which smells a whole lot different from the tropical stuff we eat. It also has menthol, which I can’t tolerate normally, but is no problem for me here. I can scarcely smell it, so maybe it’s a dosing or production issue. Most herbal salves bring on menthol like a battering ram.

Usage

I squish it right into the cracks and holes of the sores, rub it in well, then put a dark sock over it for an hour. (It stains light colors.) Then I get on with my nap, or my task, or whatever. I put it on twice a day, before getting out of bed and at bedtime. I should probably use it more often for faster results, but I’m not very good at that.

It doesn’t work for everyone, just as everything else I tried, that did work for other CRPSers, didn’t work for me. It’s another option.

Sourcing

I’ve found it online at the usual places and at my local Asian/ international market, usually in little copper-colored tubes, which is more hygeinic than the larger tub you have to stick fingers into. It’s cheap for what it is, too.

You can ask for “Chinese burn cream” if you can’t remember the name.

 

Caveats

Use common sense (all my readers are extremely sensible, so of course you will).

If it brings up a rash or makes you wheeze, wash it off well and never use it again. Not for wounds that bleed readily or might be infected. Never use on bites, because mouths are utterly filthy and bite wounds need different care. If you can’t feel the tissues where your chilblains or non-healing sores are, see a doctor about them and follow their advice over mine. And so on.

Disability & commensurate effort

Isy / / activity, adaptation, imp-possible, moving/traveling, perspective, radical presence/radical acceptance, self-care

“Why do you do that to yourself?”

Why would I not? That’s the more pointed question.

I remember being lazy. I was fit, well, and always a little dissatisfied. …This might be the human condition.

I loved to work (still do) but I also valued my downtime, time in the wild, beach time, workout time, hang time with friends. Something like work-life balance, I guess. In retrospect it seems lazy, but my perspective is a little distorted. It’s been decades since I had a real vacation from my current work.

Current work situation

My current work is living anyway, in spite of this suite of deficits and dysfunctions. It doesn’t give me time off. It’s frankly a bit tiresome.

Why, yes, that was a supremely wry understatement. Cackle freely!

If I stuck to doing only the things that hurt the least, stress my system the least, and otherwise rock this boat as little as possible, what would happen?

Would I be more comfortable? Actually… no, not beyond the time that rest is necessary and productive.

Would I get any better? Decidedly not. “Use it or lose it” beats in my mind like a metronome when I’m down too long. If I don’t stay active, right up to current limits, my exertional malaise gets worse. (It’s a real thing: exercise tears the body down, where it would build a normal person’s up.)

Survival of the fittest

“Then, let’s be honest here, do you deserve to survive?”

Most (not all) people ask that more subtly, but it’s a question I’ve faced often. Brutal it may be, but it’s natural.

First, let’s check the wording. The phrase “survival of the fittest” was coined by the economic theorist & philospher Herbert Spencer (who clearly didn’t let clarity stand in the way of a good bumper-sticker slogan.)

Darwin later adopted it, possibly assuming that his accompanying thoughts would be kept in mind. Now we have to specify them: strength, speed, intelligence, etc., are all subordinate to being able and willing to adapt to change.

The point he was making all along is that they key to survival is adapting to change. Not being in shape.

Finches aren’t humans

Darwin famously studied tiny birds on tiny islands to arrive at his insights. They had tiny life spans and tiny jobs. For them, fitness was biological: who got to breed and have their offspring get to breed, and so on ad infinitum? Breeding and brooding are simple markers.

Humans have big, tangled societies with big, tangled networks and big, tangled obligations. It’s not just breeding and brooding, although that can be part of it. It’s work, school, friends, parents, neighbors, politics & policy, insurance premiums, mutual aid, prepping for a blizzard or another record-breaking hurricane. This time of epochal shifts in weather, science, and economics creates a relentless roar of things we need to cope with and adapt to, and a life where breeding & brooding cannot ensure survival, because, for many, the money and assurance of a tolerable future just aren’t there any more. Only appropriate adaptation to change can aid survival.

We’re (almost) all forced to manage so much more than the finches ever could conceive of.

Stating the obvious

What group of people is the best at adapting?

Take a minute. I’m not going anywhere.

Who else but your people with handicaps and disabilities.

Watch what they do, how they manage in the face of an intransigent world and variable limits, how they keep going. It looks like an art form, if life itself were art.

Just the cost of doing business

I’m still absorbing an incident ~12 years ago when a chair-riding friend with paraplegia was driving us in his van, and we had to stop and get gas. I unbuckled my seatbelt and was going to go pump. He waved me down. “Nah, I got it.”

He opened the sliding door behind him, flicked his wheelchair out of the minivan and half-open in one complicated motion, levered himself and the chair into conjunction, and went on about the business of pumping gas from his chair. Then he reversed the process (more or less) to get back in.

I told him that was impressive. Didn’t he mind the effort?

He shrugged. “It’s just the cost of doing business.”

I let that sink in.

Everybody has to do tedious things to get to the next thing they want. It’s the cost of doing business, of getting through life.

Everybody’s cost is a bit different.

Everybody should have the right to choose what’s worth the cost.

“Life, liberty, and the pursuit of happiness” was originally written in bloody-handed hypocrisy, but it’s right and wise to make it true.

Challenging yourself can be fun

With all that said, my insistence on pushing my limits — as long as I can generally expect safe air, food, water, shelter, and adequate rest — might make more sense. Or maybe it doesn’t. It’s not likely to change, especially since I decided last year that life was too short to settle for survival — I was going to chase fun, and see where I found it!

Pulling the masks off in pieces

Isy / / adaptation, communication tools, CRPS knock-on effects, documentation, imp-possible, perspective, radical presence/radical acceptance, self-care

Having crashed and burned in a (for me) spectacular manner, I’m being (ahem) encouraged by many of my nearest and dearest to stop pretending I’m so much healthier and stronger and more multi-systemically resilient than I am.

My underlying state of health is not good, and I hate discussing it. It’s tiresome and depressing. That said, ignoring it obviously doesn’t work for long. Need a 3rd way.

I’m pushing 60. Time to stop pretending I’m 34… which was my last year of what I still reflexively consider my normal health & athleticism, and it was also when this pain syndrome was laying down its first tracks. Between multiple bereavements, recurring respiratory infections, and repeated courses of megadeath antibiotics, my nervous system was primed for disruption.

As one friend said, “We habitually present a version of our pre-CRPS selves” and, outside my 4 walls and the privacy within, I don’t seem to have anyone else to be yet. How can I exist without coming off as hardy and buoyant? I don’t know what that could even look like.

I go out and do things in public view, then crawl home (nope still no car, yes it’s been all of 2025, yes I’m struggling more all the time, don’t ask) to recover in private. Those are my 2 gears. I’ve recently developed a half-gear of being in my garden plot, but that now requires a lift because the bus is too brutal – although I love that it’s currently free!

It feels like I’m waiting for the world to allow me to heal. If that sounds self-pitying, you’re probably right. I’m new to un-masking, and it’ll take practice to get the tone right – un-self-pitying, but fully honest for a change.

Showing showering

I’ve been drawing cartoons of lives like mine for years. I was waiting to put them into a book, but they’re doing no good in my folio and some have been there for way too long. I’ve also drawn communication tools. It didn’t seem time to share them before, but it sure does now.

First up…

Taking a shower on a bad day:

When I’m rash enough to shower on a bad day, it feels kinda like this.

This picture isn’t finished, but it’s good enough. You can enlarge it to see the way the (to my senses) appalling changes of temperature wrap around every individual drop’s path all the way into the drain.

I couldn’t find a way to draw the way each drop feels like there’s a hook in its head, physically latching onto and dragging energy out of my body. That doesn’t hurt (unlike the hot/cold nonsense) but boy, is it exhausting!

So, when you can tell (pew!) that I haven’t had a proper shower or even gotten wet recently, you’ll be able to surmise that the pain has been higher than my ability to cope with the intensity of the experience.

For the record – I gritted my teeth and showered & washed my hair yesterday morning! I’m taking a bow, frankly. I had a familiar audiobook to listen to, which sometimes can keep my attention off those hot/cold and dragging sensations.

Keep in mind that everyone’s pain is their own. CRPSers don’t all have the same experience in the shower, because, for some, it’s awful in some other way. Not all days are this bad, even 24 years in. Nuance is key. Also, boundaries.

My pain isn’t yours, and nor should it be.

The idea here is to give you a chance to look on, without looking for anything more than your witness. That right there is a powerful thing: just being seen.

Don’t take it on.  Just adjust your expectations, maybe, as I’m learning to do myself.

If you’re a bio-nerd, read up on how humans go from mad mitosis to having skin and organs. It is absolutely fascinating – and explains a lot about neurological variations!

Communication tool: moods & self-care

I’ve also got a delightful communication tool to share.

As we all now know, my mood may not reflect the outward, apparent situation. There can be stuff burbling away that affects me in ways I might not realize, but others can.

I came up with a rough drawing of a rating scale for my housemates to use (when I had some) and it was a huge help to get that objective feedback – without anyone being defensive! I’d sometimes find the magnet moved to a different number, then go away and take care of myself until I was pretty sure it could move back up. Usually, though, they felt free to call me over and show me where my behavior was, and I loved their honesty. Did me a lot of good.

Click here for the full-sized PDF: Irritability Scale

I particularly like how it indicates when a level of irritation is appropriate. That was a mind- blower for me, as I’d been telling myself that it was always bad to be unpleasant. Nope! Sometimes it’s perfectly appropriate!

I think, and hope, that sharing these images and tools will:

A. Be useful, and

B. Get it right through the concrete (taps own head) that I need to come up with ways to live and engage with the world that are congruent with this reality.

My inner Cleopatra, queen of de Nile, needs to get back to Egypt.

Cheers and virtual hugs are most welcome! I’m daunted by this job. I mean… I value honesty enormously… just not about my weaknesses and disabilities 🤣

The Beast

Isy / / 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.

Need a moment to process this.

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.

Care of Spines & CRPS

Isy / / activity, basics, brain care, CRPS knock-on effects, injuries & surgeries, radical presence/radical acceptance, self-care, tools and techniques

This is about the messy intersection of CRPS & the mechanical aspects of central nervous system dysfunction, and dealing with those effects.

I’m writing through the waunnng, waunnng, waunnng of a ringing headache. I’m hoping that if I hydrate, urinate, and (carefully) ambulate enough, it’ll pass faster. We shall see. Meantime, I’ll do my best to pass on some useful info.

The brain and spine are supposed to float in cerebrospinal fluid. We are supposed to stay hydrated enough to keep those sensitive tissues from grounding out.

We have 2 kidneys – each one capable of filtering twice the water we actually need – as a practical accommodation for the fact that, throughout history, most water was filthy and needed lots of filtering.

We have 4 times the kidney power we need for a busy, messy lifetime. We’re supposed to use them! The more we use them, the healthier they can stay. They love to do their job.

When we’re properly hydrated, our brains and spines can float comfortably in their spaces. When they float comfortably, they have plenty of shock absorption protecting them.

Spinal care

Dr Faye Weinstein taught me an important part of brain & spine care.

I had too little cartilage in my knees, so I had developed the habit of dropping into chairs instead of using my legs to lower myself neatly.

She hated that. She visibly flinched, and one day she finally cried out in audible distress, “Stop doing that!”

I stopped doing that.

Just as she had predicted, my baseline level of misery became less.

Once I was out of the habit of dropping into chairs, then, when I did it again, it caused headaches and sometimes back pain (depending on my hydration, of course). I was no longer used to enduring this as part of my daily quorum of yuk.

That was (checks watch) over 10 years ago. My brain and spine, oddly enough, haven’t gotten any younger since then.

Yesterday (after a couple of days of being “too busy” to hydrate properly), while I was turning to admire something across the street (a boat or a building; I forget which)… I stepped off a step I hadn’t noticed. One step down, caught myself, barely stumbled, no harm done. Massaged my neck a bit, to ease the slight jamming on one side. In my formerly healthy system, that would have been that. Probably would have forgotten about it instantly.

But now is different.

It took 10 minutes for the icky feeling to set in at my low back and back of head. It took a little over 2 hours for the whole brain-fog and uncontrolled body pain to take hold. Chronic CRPS really is wired into the whole neurological system, and one of the hallmarks is how the spine takes on an anti-life of its own in the face of any signs of disrespect.

Clearly, my spine felt seriously disrespected.

Content warning – skip this description if you’re squeamish about pain:

We know that I have no effective pain control left to me, with genetic tweaks making narcotics disgusting (they make the pain worse, cause untreatable nausea, and trigger horrific mood swings), and mast-cell activation making NSAIDS unbearable (they cause a soft-tissue-wide inflammatory pain, making it feel like shards of hot glass are hammered into all my cells).

So, how to approach this?

There’s a super-concentrated lemon balm extract that helps calm down inflamed nerves. Lemon balm has been used to calm nerve inflammation & pain for, approximate thousands of years.

Since all the nerves coming out of my spine are feeling very hot right now, I’m taking that about every 8 hours.

Note: check this against your meds, especially with GABAnergics. Ask your pharmacist to check their standard herb-drug interaction charts.

Pain salve on my spine and up my neck before bed, and also on arms/ shoulders and hips once I tried to sleep, helped noticeably.

It was a rocky night, but I’ve been getting as much water down as my tummy will tolerate and, now that my kidneys have been flushed 3 times, the headache is noticeably easing.

Conclusion

We can’t be alert every second. Our senses are so distracting at the best of times. Finding ways to manage these impacts is unspeakably important.

Long-term pain patients tend to get self-concerned to a degree that could be obnoxious normally, but it’s a legitimate self-care attribute in a life where one wrong move or one wrong exposure can destroy weeks or months of work.

Mouse brain neurons, two pairs, stained flame yellow against red background
Image by neurollero on flickr, CC share-alike attribution license.

One benefit of this self-attention is learning how to manage and mitigate the problems that arise by catching them early, and sharing the info in the hope that it’ll do some other painee or their caretakers some good. We have to learn from each other. Nobody else is as qualified.

With a pet & chronic illness

Isy / / CRPS knock-on effects, documentation, food allergies, imp-possible, moving/traveling, perspective, radical presence/radical acceptance, self-care, survival, tips on traveling with pain

This is a long one. Grab something to drink and put your feet up, if you want to…

In the wildly unlikely event that, say, a vulnerable American citizen felt moved to respect the anti-immigration feeling and return to the lands that, say, my ancestors left in the 1600s and 1700s… how would that work?

It helps if you already have a passport. This is important. Go here:

https://travel.state.gov/content/travel/en/passports.html

and follow the instructions there – whenever you land on it. Passports are issued by the State Department, and the State Department is currently being defunded and depopulated, so their processes may change.

This hypothetical traveler – let’s call her Max Peregrine – and why not? – is female, disabled, poor, and has very short hair. This puts her in several categories of risk in the US in 2025, and she’d like to know what other options there are for someone like her. Her service animal, a minature goldendoodle, has to go with her.

This is important.

Max has learned that a pet leaving the US has to get a certificate from a vet specifically qualified to issue international pet health certificates. She asked her usual vet, who referred her to the USDA web site to find one.

The USDA has been running increasingly lean for years, and has recently been gutted by the incoming president and his team, so the list of vets qualified to give this pet health certificate is out of date.

Max has been disabled a long time and is used to this kind of disappointment, so, after an Epsom salt bath and a TV break, she called down the list of veterinarians in the area until she found one who can (theoretically) give this certificate.

It took the one vet she found 3 weeks to research whether this is even possible. The USDA (which supervises animal health certificates for travel) is running out of staff, after all, and every country people want to bring their animals to has its own peculiarities over what is required to clear a pet for arrival, so it gets very complicated very quickly.

Sadly, the information that non-vets like Max find about import requirements is less than half the story.

Also, the US export process is complex in itself, and requires a 3-hour minimum turnaround between the vet and the USDA for the form to be submitted, reviewed, inspected, corrected, approved, and printed out. That is, if nothing goes wrong.

This vet certificate has to be issued within 10 days of departure (in some cases, 3 days, depending on the country the traveler is going to) so it’s good to start this process well in advance, and be willing to stay flexible.

If, like Max, your pet had an uncertain history or belongs to someone with limited mobility, it’s possible you’ll hit a snag: if the initial rabies series was not done exactly right, you might have to start the series over, do a blood test in 3 weeks, and be sure to get the next one inside of a year.

If you travel to Europe, you’re in luck: go to a certified vet there and get your pet an EU Pet Passport. It’ll make everything a lot easier as it’s widely accepted.

It’s important to remember that Max belongs to a category of people who can’t afford a package trip, nor a concierge trip. She has to do all the planning and reservations herself, and track all that info if, for instance, her pet’s initial rabies vaccination did not happen exactly as intended, and every leg of her trip has to be adjusted, by herself, one piece at a time.

Every transport company has their own pet policies, so she also has to call every single carrier in the chain of the journey to make sure her pet reservation has followed her.

It’s fortunate for Max that her executive function happens to have extra bandwidth for travel planning. It’s in her DNA. Her ancestors have been traveling for at least 350 years.

Since Max’s mini goldendoodle, a girl named Sam, is a Service Animal, there’s no question of that pet being refused. She has to fly with her person.

However, her paperwork still has to be in order!

So, having rectified the rabies shot situation, changed the entire trip to 2 weeks later to make sure her dog can come, and found half a dozen places to get food that matched her dietary requirements in each place she planned to stay in, Max was smart enough to know she could not possibly relax until she actually had her toes in the sand and her dog in her arms at the same time. The preparation for this trip had only just started.

Max is probably a bit overwhelmed, but can get good advice and good tools. She got Smart Tags for her luggage, found friends willing to be phone buddies to use Find My Phone to watch her progress, set an alarm to remind her to turn on Location and 5G at every transfer to give Find My Phone a signal, and then returns to low-rad mode so she’s not battling cyclical vomiting syndrome (which is what happens when she’s around too much signal too close to her body) while conducting a long trirp.

Cyclical vomiting is never fun, but it’s worse all around when you’re packed into Economy class.

Max, who hates travel surprises and likes to be organized, has also prepared a travel folder with pockets and tabs:

  • Complete itinerary in the inside pocket in front.
  • First tab: Check in information for each stage of the trip. This also proves that she plans to return in less than 90 days, because that’s important in an increasingly immigrant-hostile world.
  • 2nd tab: Visa related info: trip insurance coverage, with the coverages page copied and stapled to the front for easy reference.
  • 3rd tab, more visa related info: Lodging reservations, printed in every language she’ll be travelling through, so each border can conduct its own checks. Arriving with nowhere to stay is a big no-no these days; no more turning up and finding the nearest hostel.
  • Health tab: vaccination info. A lot of places really care about this, so get your shots if you want to travel, and get printouts from your provider. If you can afford it, you can have a travel specialist doctor make a yellow International Certificate of Vaccination, which is accepted everywhere – like the best credit cards.
  • Emergency: this tab is particular because Max has underlying medical conditions. There’s a MOLST form, which providees instructions for when someone is unconscious and can’t tell you if they want CPR or oxygen. It should also have copies of prescriptions, which you can get by calling your pharmacist and asking them to print them out. (Some countries require prescriptions hand-signed from the doctor’s office, but electronics are making their way into this process more over time.)
  • The pet, naturally, has her own tab. Her health certification, rabies documentation, and whatever else is needed, go here. This includes her microchip number, because pets require a chip for travel.

At the back of the folder, Max has left space to keep brochures and flyers for things she most wants – from safe places to get food, to inexpensive trips, free/cheap sights, and bus schedules. Max looks forward to filling that up, but knows she has to be careful with money because she’s still poor … she’s just staying somewhere a lot cheaper than her home at the moment, somewhere the government is not (yet) committing very messy self-merc.

And then there’s packing. Max has to bring her own self-care mechanisms, which involve a lot of pillows and some extra gear. Being disabled is a lot of work and there’s just no getting around that. Everything that’s most necessary for that work has to come with, or be bought there, and she’s on a tight budget.

Happily, sunshine is free!

Max is an expert at enjoying the little beauties and making the most of whatever blessings come her way. She’s going to have a fabulous time, and so is her service animal.

I’m a little envious, but I’ll be sticking around for the foreseeable. I helped Max with some of her research, though, so there’s likely to be more to come…

Neuro reset FTW

Isy / / activity, basics, care team, imp-possible, perspective, self-care, what works

I’m working on building up stamina because being a blob doesn’t agree with me.

I had one of our rare, hard-won, absolutely stunning neuro physiotherapy sessions yesterday. It usually takes time (days or even weeks) for my body to embrace the resetting, but this one is showing up fast.

Until last week, walking a bit too far would wipe me out.

When I was well, walking lifted my spirits and calmed my mind, and “too far” had more to do with comfort & convenience than anything more pressing.

For most of my illness, walking helped in the aggregate – if I kept it up, I did better over time. It was good, and I was glad to do it, but…

I’d forgotten, until today, just how lovely it was possible to feel after a good walk.

Yes, I’ve overdone a bit, and I’m open to the idea of staying in tomorrow & taking it easy.

I just… I haven’t had a workout high in… dear heavens, I can’t even remember. Decades, possibly.

Must remember to send this link to my physiotherapist. She’ll be:

A. Over the moon for me.

B. Reminding me to drink a lot of water and put my feet up for a bit.

It’s hard to keep it all in perspective – to celebrate this properly, without falling into the old trap of ignoring all the ongoing work it took to get here; to keep it up & stay honest about the jungle of limits I still have to negotiate.

Good day, though, eh? Really, really good. My heart is as light as the feather of Ma’at…

Tough gift, but a good one

Isy / / adaptation, ANS and fight-or-flight, brain care, critical thinking, humor, imp-possible, legislation, moving/traveling, perspective, politics, radical presence/radical acceptance, realpolitik, self-care

American Thanksgiving is the 4th Thursday in November. I had a gift that day – a difficult one, but I’ve been unwrapping it and wondering ever since.

Wide-eyed kitten staring at a roast chicken on table in front of its face

My phone (which has my i.d. and my bank cards in it, and it provides my only internet access) disappeared on Wednesday evening.

While this is momentous for anyone these days, I have a disease-specific reason for being harrowed by it:

  • I listen to audiobooks to drown out my brain’s ongoing response to the ongoing pain, wonky signaling, and that disconcerting imbalance between what I need and what I have or can get to keep my environment safer for my body. To me, it sounds like screaming; I’ve heard others describe it other ways, as crunchiness or a kind of rattling wobble or other experiences entirely. My sensory processing apparatus decided that it’s a constant, ongoing scream from someone too upset to be the least bit self-conscious. Audiobooks and internet rabbit-holes are fantastic ways to manage this, partly by drowning out the internally-generated sound by the external one that I want to hear, and partly with the power of distraction.
  • Pain, reasonable & irreconcilable anxiety about how I’m going to get through anything from this day to the next chapter in my life, and the occasional neurological crumping (when my cognition shuts down and my coordination goes to hell, so I can’t make ideas or hold things) … all of these are best addressed by comfort and distraction. For me, books and memes and contact with absent friends are all good for that.

For Thanksgiving – when everything is shut aaaaaaaall day – I had none of that.

I just need a moment to process this.

It was a sad day. I couldn’t make or receive any of the usual holiday calls with people I love. I couldn’t go out to eat, and the previous evening I’d had to put back all the holiday food I had in my cart and get only what I could pay for in the cash I had on hand.

I had the sweetest visit from 2 friends (I explained why I had nothing to feed them with) who made it their mission to check on me twice daily until I was en-phoned again, and that helped me get through several hours much better.

Apart from that, I had little to do but hear the screaming, and wonder what I would do next year in a country that has voted for unprecedented chaos that, on the showing so far, is liable to shatter a large part of what makes it possible for me to live. The litany starts off like this: “The level of daily chaos to come is unbearable to think about. Every time I read up on the latest plans or appointments, it gets worse.” Not good for dysautonomia, among other things.

Sketch of brain, with bits falling off and popping out, and a bandaid over the worst

At the end of the day, I began to apply a bit of cognition to this experience (as you do) and realized something important…

The screaming was a whole lot quieter than it used to be; than it was, say, a year ago.

Last year, it was a lot quieter than when I first moved in here, right before the Pandemic. That was a tough time and the screaming was so loud I had to play the audiobooks and dvds at a fairly ridiculous volume to get the benefit. (The neighbor knocked on my wall a couple of times.) That volume might be partly why I now have ongoing tinnitus, a ringing in my ears that’s always at a different pitch and volume from the inward screaming. Clearly, my brain decided not to confuse the two.

Also, I noticed that my mind had actually recovered some ebb and flow!

There were times of day where it was natural to fix things, other times for doing something creative, times to sit and be quiet and times to move around and chat with the cats…

Natural texture and dimension in my mental activity, which the constant audiobooks had smoothed out and neutralized since they came back until that day of enforced quiet.

To the able-bodied and -minded, this is perfectly natural. It didn’t used to be for me. I had 10 or 12 alarms set throughout each day to tell me exactly when to do each kind of activity, because that mental texture had been quite, quite lost.

I got through 2 nights and a day without any alarms. I survived, and I also realized that alarms are jarring.

Who knew??

It turns out that my slowly-healing autonomic system has finally agreed with me that a stable diurnal schedule is a good thing to do, so I wake up within the same half-hour every day, without needing to be kicked awake by a series of 3-4 alarms.

The phone climbed out of its hiding place the next day. (Of course, I had already thoroughly checked there.) I canceled almost all of the alarms, except the one for feeding the cat.

I can make a short list for each day and get through it by riding those mental waves – and being kind if I can’t get them done at the very time that I wish to. It seems that being kind to myself knocks down a number of stress-related barriers.

Horse & woman laughing hysterically

I’m still digesting this new experience of the world. It’ll probably continue evolving over some time to come.

It’s not exactly normal to have such a significant level of recovery when you’re close to pushing 60 and sitting on 25 years of pain-related neurological disruption, including 20 years of dysautonomia.

So yeah, it was a sad day and not an easy one, but what a gift it turned out to contain!

I needed such a gift. My life is about to change drastically, and it’s up to me to work out which path to take through it. None of them are easy, but some could be more rewarding than others.

Can’t wait to see, not only how I’ll screw up, but what I’ll learn from it!

I’m going to try something new, as I navigate this tricky shift in life: asking for input and advice from people outside my head and its rabbit-warrens of associated ideas.

I know, wild idea… and for that reason alone, probably worth trying.

 

Defining my terms: burny brain

Isy / / adaptation, ANS and fight-or-flight, brain care, definitions & descriptions, imp-possible, nutrition, radical presence/radical acceptance, self-care

Current science states that there are no nerves that convey temperature or pain in the brain.

Well, not a normal brain.

Well… not as far as we know.

Since I’m terribly clear about the fact that my sensory experience of life has been extensively revised over the past quarter century of constant and increasingly centralized (that is, brain- and spine-driven) neurogenic pain, I’m going to sail sweetly right over that assumption and get on with today’s topic.

We live in the messy and extensive reality of the world outside of labs, scientific studies, and academic debates. Don’t worry about them – they’ll catch up eventually, usually in about 10-30 years.

Brain inflammation

Brain inflammation is one of those topics which patients and wholistic or ancillary professionals have been working with & evolving strategies for for years, but many clinical practitioners have trouble working out how it applies in real life, let alone how to work with it given current techniques.

Practical point:

This is not a dis of those practitioners, it reflects their environment of practice. Their training – and liability insurance coverage – focuses on what has been proven through multiple double-blind placebo-controlled studies, preferably on thousands of patients. Those take time, funding, lots of patients (which rare diseases don’t provide anyway), and a crucial position away from interfering with vested interests.

This is why clinical practice lags 10-30 years behind practical patient experience.

Where were we? Oh – brain inflammation.

One of my dear friends has been working specifically on chronic longstanding brain Inflammation, and it’s been validating as heck to see someone so smart, disciplined, and articulate work through that. Burny brain is, in my case, a sign of acute flare-ups, and talking the concepts over has helped me articulate my own situation.

And then there was Election Day and this lifelong historian & longtime spoonie saw my future get thrown on the flames.

NB: I don’t believe ideology or labeling, I believe that past performance is a good indicator of future behavior and, more importantly, that a written plan is a big fat clue about what to expect – and it’s not good for someone in my position.

After days of feeling staggered, my brain caught fire.

Inflamed brain, level 1

When a series of events, or one overwhelming and life-altering event, land in my life and awareness, my brain takes a few days to go into full bonfire mode. But it does:

Managing that

I depend on my well-established habits around self care and communication to mask my real state and continue to function, but it’s not reliable.

I crank up my vitamins, especially B complex, and do what it takes to get enough protein in. This is tricky, because eating is hard work and few things taste ok.

Keeping a stable schedule is important, to avoid feeding into the general autonomic instability.

Stabilize, stabilize, stabilize.

Since I lose track of time constantly in this state, I have to double-check whether I’ve taken my meds on time, and they’re one of the most important ways of stabilizing that there are.

If I had a bathtub, I’d take baths with vitamin C (20 min very warm; lie down on the C-powder as the bath fills) and then Epsom salt (20 min not so warm) then take naps – a fantastic 1-2-3 recovery technique that I really miss having access to. I recommend it highly.

Level 2

Once the flames get lower and my brain feels more like heavy coals, I know I’m making progress, although it doesn’t feel great:

This feeling of roaring combustion comes with big, fragile feelings. I limit contact and focus hard on noticing when & how I’m functioning, and grab tasks off the to-do list that relate to that.

So, laundry was a significant part of my weekend: no brain required, little physical effort, quick reward, and a huge improvement in my life. Now I’m  dressing off the clean laundry pile rather than my drawers & closet, because I can’t focus on folding & putting away, but that’s okay.

More veg today, partly because I was finally hungry for them, and also because protein was too difficult.

All the olive oil all the time.

Level 3

This is how my brain feels today, more or less:

Honestly, this still sucks beyond belief, but it is improvement and improvement is good. I could eat in portions larger than half-cups and palmfuls, finally.

Today, I wanted to make some calls about getting something fixed, but that wasn’t possible – I kept going blank and stumbling into furniture when I tried (burny brain comes with worse coordination).

Instead, I went and got a ball of yarn to finish a project, which felt good and freed up more focus; with that, I dropped in at the law library and learned how best to approach an issue and then did some online research with that in mind. Now, when I do make those calls that i couldnt make today, I’m actually going to be much better prepared. Still not possible, but it will be at some point.

I wanted to make progress on another administrative task (paperwork, urgh) but my friend has taught us that, even though the clock keeps ticking, when the inflamed brain says “no”, it’s useless to argue. Let it go and rest that brain.

So I put on a movie. Then a dear old friend called out of the blue and we enjoyed reconnecting. Very good for the brain!

Level 4

With any luck, tomorrow my brain will feel more like this, still raw and hot, but somewhat contained, and with more cool spots:

Unless something else happens to shake my foundations. You never know. But still, I hope for continued improvement!

If you’re having trouble understanding brain inflammation as a physiological thing, write a query in the comments and I’ll explain…

Later <grin>