I’m going to give organizing my mental database a try here. The aim is to pick one broad topic each month and cycle through them in a year. I’m doing it the way nurses and doctors are taught to do it: head to toe.
Physical assessments have to go from head to toe, every time, without exception. This makes use of the brain’s basic tendency to work in patterns. If you assess every patient from head to toe, every time, then the variances are easier to find (because your brain is so dialed into what to expect at that point in the pattern) and it’s a lot easier to get to a sound differential diagnosis.
If I go to the doctor with a sore knee, the doctor is still going to notice my level of consciousness, attachment to or detachment from my environment, track my gaze and whether the sides of my face are more or less equal, differentiate how much of my limp is because my knee hurts and whether any of it is because my balance is off (all of that is about the brain), notice my breathing pattern (lungs), become aware of blood- flow problems (heart) showing up in my skin, and checking to see if I’m “splinting” or bracing against pain or weakness in my abdomen (g.i/g.u. systems) and hips (ortho, right above the knee).
An experienced doctor does most of this in 1 to 3 seconds, because it’s a head- to- toe assessment every single time and they can just let their pattern-matching brain (which is powerful and primal) take care of it and send up a flag to their conscious mind if anything is abnormal.
The medical term for “head to toe” is “cephalocaudal”, which literally means “head to tail”… but humans don’t have much in the way of tails, and our bodies keep going for quite a ways after them. I’d love to hear from my Latin-knowledgeable readers what the term should be!
I’m recovering from a migraine, which is very on-topic, but I’m not yet up to writing much. I thought I’d introduce this new structure, which I hope will be a bit simpler and less overwhelming than “what am I wrestling with right now that I could usefully write about?” There’s so much to write about, it magnifies the intransigence of the empty page. (Writers know what that’s like.)
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.
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.
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…
I’ve been chewing over something for awhile and recently realized that it might be time to apply that much mercy to myself. It’s a more coherent, whole way of thinking about what I discussed in some panic in my previous post.
Complex chronic spoonies tend to drive ourselves hard because we really have no option (the exhausting, but relevant, internal chorus of “adapt or die, figure it out or eff off, push through or give up, fight or fall” is inescapable) but does it need to be so ubiquitous?
A lot of these posts have been oriented on finding light through the cracks, on putting life itself into center stage somehow. I think I’m cooking up a new way of doing that.
The most basic of basics
Many years ago, when I was working as an emergency nurse, I realized that (despite the hype & excitement) our job was fundamentally simple: give people another chance to get “it” right.
Whether “it” was keeping up with their meds, staying off of whatever was poisoning them, choosing better company, finding the healing path that worked for them – whatever. There are fewer “its” than their are people working on them, which is why we are never the only one with our struggles.
That made more sense inside my head. Sorry.
People wind up in the ER because something bad happened, and usually human ignorance, stupidity, or violence was involved.
That’s not about blame. People don’t always get to choose their company or can’t always bear to be alive without some kind of buffer between them and their situations. Even if they did do something colossally daft (like the rich kids who decided to cut out the middlemen and drive 350 miles to buy their drugs from the distributor; 4 came down, 1 eventually went back), it’s not right to require mistakes to be terminal if they don’t have to be.
Of course people with heart disease should take their meds even when they feel fine, and get periodic blood tests to show that it’s working. Of course people with diabetes should keep an eye on their blood sugar and stay on their meds. Of course primary care when you first get symptoms is better than going to the ER when you start to fall to pieces… but it’s awfully hard to find a primary doctor these days.
Life is complicated and increasingly expensive. ER work really shows that.
Anyway, I saw our job not as holding back the sea with a broom (as some do), but as giving individual people a chance to figure out how to do things better. Lift properly. Drive sensibly. Stay off the hard stuff. Find an appropriate doctor who’ll listen – and then talk with them.
Nobody likes to be told, so reciting these mantras to them doesn’t often make sense. Oddly enough, it can be a lot more meaningful when you’re meeting their worried gaze as you administer the medication or fit their c-collar or go over the x-rays with them. Or tape and dress the wounds in their wrists.
There is so much we don’t control… sometimes we just have to remember what we could control, and how to put that in reach. It’s not easy, but it’s often very simple. When the universe is dropping its big hammer, where do I need to be when it lands? Under it? Or can I get off to one side? What will I have to let go of in order to get out of the way? Is it worth it?
The answers to this aren’t always obvious, and “worth it” to some is not the same “worth it” as for others.
What that looked like in practice
We had a lot of repeat customers. Some of them I wound up zipping into body bags, because what it took to get out from under the universe’s hammer was either too far out of reach or not ultimately worth the effort of letting go of what they were clinging to. They mostly didn’t want to die, but it wound up being too hard to do what it took to live.
I’ve got to respect that. It’s not for me to judge.
Some of them I saw come back just for ordinary bump-and-owie stuff, showing me the healing scars (inward or outward) of their old struggles. There are no words for the sense of sunrise I felt on seeing them. It made the rest worth doing.
It was all their work… but it was up to us to give them another chance to get it right.
My chance
I absolutely love to work. Being useful and productive is the bomb! If it weren’t so important to me… well, I probably would not have come down with CRPS, which stemmed from relentless overuse injuries in my case. I could not take a break to save my life. Whatever it was, I had to jump in with both feet, arms flailing and shouting “incomiiiiing!”
I imagine I could be pretty tiresome that way. Belated apologies to my friends and colleagues along the way!
I’ve been wrestling – for years (how embarrassing) – with recognizing that having fun… recreating… seeking diversion instead of merely a change of work… I’m not even sure how to put it… but that loose, apparently useless, seemingly non-productive use of my time, is really good for me.
It lowers my stress levels. It reduces my pain. It raises my spirits. I don’t know if it gives me back any of my lost abilities, because I find it incredibly hard to do and have never been able to hang onto the easy-going vibe long enough to find out.
What with one thing and another (I’m an American living stateside in January of 2025; IYKYK) I have a powerful inward pull to go somewhere glorious – and affordable, thank you very much – and simply muck about enjoying the diversions. Play tourist for once in my life. Soak up pretty colors and different sounds. Be warm every single day.
And, if I get bored or don’t like it well enough, simply go somewhere else.
At this point, a lot of places are more affordable than the U.S. (more on that later) and, for all the challenges of travel in this body, I do plan on doing nothing but recover and enjoy myself for a good while afterward.
…It’s a weird idea, honestly.
Good thing I’m used to maintaining and cultivating relationships via the internet, after a quarter century of having to do so. It makes love more portable.
It’s still a weird idea. Wherever I go, I still bring myself along, and I know I’ll have to leave my compulsiveness behind with my snowboots. That’s unnatural, but I’ll learn.
Learning to let go of that deep attachment to being productive and useful is not the same as not being productive and useful – but it could give me time and space to heal my much-clobbered systems.
That might be the point.
Rest and play is widely regarded as essential. I think that’s the “it” that I need to work on getting right. Get out from under the falling hammer of overdriving a broken system.
I’m likely to post more often, about littler things, and to mask less about the impacts of my illness and circumstances. I’m hunkering, and inviting you to join me.
Today’s topic is about a beautiful thing.
Olive oil is proof that the Earth loves us and wants us to be comfortable.
Sadly – and, I’m sorry to say, despite marvelous advertising and gorgeous labels – most of the olive oil you can buy is mixed with other oils, whether or not that’s legal or whether the labelling indicates this. This dilution is so integrated in key parts of the industry that there’s not much hope of stopping it, but honest people keep trying (https://www.foodnavigator.com/Article/2024/08/08/olive-oil-fraud-increases-in-europe).
However, it’s a big world and artisanal food is becoming more accepted and appreciated. This creates light between the cracks, so it’s still possible to get 100% olive oil that’s not diluted with something unfortunate, as long as you have a sufficiently sensitive laboratory on hand to check it with.
I do. My analytical laboratory looks remarkably like a reactive, chemically over-sensitive, mast-cell-activated human system which I’ve been working with and paying attention to almost since I was born. It’s expensive to maintain but easy to move. It goes everywhere with me, so I can always check what I eat, drink, and breathe – whether I like it or not!
It’s not always clear about the details of what it reacts to, but if there’s something at all whacky with whatever I’m taking in, my system will generally let me know in anything from moments to hours.
My body can’t stand any rancidness and it screams its head off at oils that should, theoretically, be fine – as long as they’re highly processed. Canola and deodorized oils are pure hell for me, triggering pain like ice-picks swinging into my arms and stomach.
Certain kinds of refining techniques make otherwise innocent oils do likewise, although they might fool other, more ordinary labs into reporting that there’s simply nothing amiss. Technically, there isn’t, and an ordinarily healthy body would agree with that. Lucky things.
My body has its own criteria and levels of accuracy, levels which remind me that some physiological events are triggered by molecule-sized exposures (as are hormones and immunity, even in healthy systems) rather than by mouthfuls or serving sizes.
Experience has taught me that it’s cheaper and easier to pay attention to my built-in laboratory and its reports, rather than try to convince myself it’s imaginary and the marketing, labels, and purported 3rd-party tests must be more correct than my own body. Nah… my body is a better guide about what to do for my body.
Where to start
The easiest test of olive oil’s purity is whether the oil smells olive-y. (If you don’t want olive-smelling oil, might as well use something else anyway.) I always start there.
From much experimentation over the years, I’ve found that olive oil that’s 100% Californian is pretty reliable. Almost anything can be grown in that region, but the market for adulterants (like deodorized hazelnut oil, commonly used in the Mediterranean) is hotter in their more natural state in California. I can’t really imagine California nut farmers – a proud group, not to mention bright & as profitable as possible in a drought-torn land – processing their oils into bleah and selling it for pennies on the dollar. Nope, they’ll take top dollar for their good nut oils, thankyew!
Olives are probably better-suited to California’s arid weather than thirsty nut trees. So, apparently, it still makes financial sense to deliver all-olive olive oil.
Naming names
I’ve found 2 brands of olive oil that currently work for me. There used to be 3, but one got hugely popular and ramped up their supply to meet demand and draw down prices, and (for whatever reason – I’m not making any accusations) their oil started hurting like heck.
Oil #1
Paesanol is a family-grown Italian oil. It has a slightly buttery mouth-feel with an olive-rich scent and a glorious flavor. The organic version is as good as a pain pill, actually knocking back the pain and confusion for about 4 hours, or even breaking the cycle. The price varies considerably through the seasons and right now it’s at peak price. (I stop paying attention when it gets over $30/bottle). The price should come down again when the new season is bottled and shipped, probably pretty soon.
It doesn’t have all the usual tags and certifications that a foodie might look for. I live in a great growing region and I know that good farming doesn’t always mean being willing or able to handle the extra paperwork that certificates require. Whatever its status, it works like a charm for me and I love it.
Oil #2
My go-to (now that Paesanol is out of reach price-wise) is Cobram Estate, a 100% Californian olive oil from an area I used to live in. It’s very good, though it doesn’t have quite the lush personality of Paesanol. Slightly peppery, which I like (because I can’t have real pepper any more). It marries well with other flavors, making it a wonderful base for simmering with garlic and herbs and making flavored oils with, topping soup with, mixing with veggie mash for those of us on low-residue diets, or splashing on eggs or salad or bread or anything else. Excellent all-arounder.
It helps a little with the pain, but, most reliably & importantly, it never makes it worse. That’s the key, really.
Afterthought
As food prices rise (amidst record profits for agri-biz and food suppliers, hmm), I expect to have to revisit this and try some more beautiful bountiful olive oils. I hope I can find a few that settle well and don’t hurt. It’s good to have options. 2 is not a lot of options.
Most people want a reasonable life: reasonable effort should result in a reasonable income, so they can keep a roof over their heads, feed and clothe their kids reliably, and be able to get out once in awhile.
This is increasingly difficult. That’s not reasonable.
As for me, I want to be, not only safely housed and fed, but also in not-too-much pain so I can get a few things done that help, cheer up, and inform & amuse those I care about.
I headed to psychotherapy after texting, “I’m on my way. I’ll see you in person today, barring the unexpected”
I was feeling a bit cautious, because a couple hours before, the thought had come to me, “when things get hectic, trust your training.”
What training? Was I about to have a series of intrusive thoughts harking back to the times I’ve had to file restraining orders, one of which magically disappeared and I had to flee the area – right before Christmas? I hoped not. Martial arts training has certainly come in handy, but come on…
No, no intrusive thoughts, but I did wonder which set of training I should have in mind.
A few miles down the interstate, I saw a pickup truck stopped dead, and a sedan facing it.
People were only just getting out of the truck. I put my flashers on and pulled in behind.
I definitely trust my training in this kind of situation. I put my anxiety to one side and sailed in.
The only person to worry about was a littlie in the back of the sedan. Had spontaneous pulse – a good one – and respirations. He could speak, to the limit of saying, “I want my Mommy” (sound of heart-strings tearing), so I checked his spine at his neck. It was there, but not quite right. Once he could speak more, he told me his neck hurt where I touched it (I’d been holding his head & neck stable since I felt it). As I told the fire department medic later, “on me, it’d be a chiropractic adjustment. On a littlie that age, I’m not sure.” He nodded and sent his buddy in with a pediatric cervical collar.
Littlie’s mother was on the phone the whole time with him. So much love swirling around in that car. I told the Dad that I noticed it, and that it’s healing.
At each stage – or rather, just before the next round of excitement – I explained to Littlie that there would be more people, highly trained people who really cared about him being okay. Let him know roughly what to expect at each stage. Coached him to go along with things as well as he could. When the fireman asked him to squeeze his finger, he squeezed my hand instead (sound of heart melting).
I could see most of my words going over his head (as expected), but I could also see the sense of reason and structure calming his exhausted and shocky brain so he could tune in a little more.
I grew up in a musical household, so naturally I hummed pretty little made-up tunes and it visibly calmed him – and possibly his parents too, a little.
I’ve been working on learning how to stabilize a shocky system for 25 years, on top of my trauma nursing work. I’m only a patient – and a nerd – but still, I have lots of good training. I trusted my training in that, too.
I gave his mother my number right before the fire department and EMTs rolled up. I think it was a training day, because there were 7 or 8 more people there, one of them a cheerful charming know-it-all (every team needs one of those) who got the best responses out of Littlie.
I let the kid know I had to go but his Mommy would stay on the phone with him and he’d be cared for by these really nice people. Told his Mom I loved her kid and he was terrific (sound of heart-strings pulling).
Once his c-collar was on (definitely a training day; I helped get it positioned and sealed correctly in the end) and they had the gurney ready, I realized I had to stand up. After perching my crippled butt by one hip on a steel door frame for half an hour. In front of people. Specifically, a total of 9 or 10 fit, athletic slabs of beef (-cake) no less than 10 years younger than me, and most of them half my age.
This was not going to be great for the ego, but I knew I could get a laugh out of it.
So I used both arms and every available leg (which was slightly less than 2) to lever myself upward, saying, “I’m an *oooold* trauma nurse” by way of cover, and squirmed through the kindly, protective testosteronic press and into fresh air.
I signed off with everybody and retreated to my comfy car.
I called my psychotherapist and said, “Remember what I said about ‘barring the unexpected?’…”
We had a phone session once I was safely off on a side street and in a proper parking space. She was full of commentary about how I applied those psych skills and met psychosocial and informational needs appropriately, as well as the nursey stuff. So yeah, that was good…
… because my brain was churning constantly about every single moment and thought and decision for an entire hour. Looking for a fault. Looking for something I’d missed or where my training had lapsed or been forgotten. Cycling through, over and over, looking for any lapse.
This used to be how I improved my skills – look for errors, even tiny ones, and figure out how to prevent or avoid them in future. Now, it’s just my ADHD brain torturing me.
And computer says Nope. Failed to suck. I’m pretty sure I failed to suck. That’s a relief.
I’ve been thinking about it pretty much nonstop, but rather than worrying myself woolly, I got an organizing thing for my car and picked up some food. Both of these are calming, grounding things, perfect for pulling my adrenaline out of the stratosphere.
Then I crawled home and had fresh corn and gluten-free carrot cake for dinner. It’s good to have a little sweetness when your body is still convinced the world is full of excoriation.
I’ve had no calls from them and I don’t expect one. They’ve got to be absolutely wrung out regardless of how things went. The kid comes first, and then comes their own care and self-management.
They don’t have to think of me ever again: I know how shocking and painful it could be to revisit the moment.
I’d love to know. I hope like crazy that the kid came out of it OK. I never got to follow up with patients when I was a nurse (because confidentiality), and I’d sure appreciate it if this family wanted to give me a heads-up just to soothe that old itch.
All that being said, I want all you non-nurses to know that they don’t owe me one word of contact or one moment of concern. I was in the right place at the right time with the right training, and I trusted my training. That’s what we do.
They have the hard part: figuring out next steps with a shook-up and possibly injured Littlie who was going home early because he was already ill.
That kid was having a rotten day.
I sure hope it got better.
Forestalling future problems
I don’t have a jump-kit for my car. That could be a problem in the future. I was lucky this time because all I needed was my brain, arms, hands, and voice.
It’s probably the 6th or 7th accident I’ve stopped at and I really do know what’s needed at the roadside – and it isn’t much. I used to get confused by the fact that I didn’t have a stethoscope, oxygen on tap, i.v. gear, and All Tha Meds. Once I’m on scene, though, it gets very easy.
Any blood or, indeed, anything wet? Nitrile gloves, packed up in pairs and stowed in a closed outer pocket to keep them clean & dry and easy to get on.
Heaven forbid, does anybody need CPR? This very rarely happens, but when it does, I don’t want to have to dig for the needful. I physically can’t do chest compressions (though I can coach any able-bodied person properly) but I can darned well use a mask with a one-way valve as if I’ve had years of practice. Years. You don’t have to have that (the training has shifted away from doing rescue breathing) but I feel that I do.
Pressure dressing? Kerlix. Sling? Kerlix. Wound cleaning? Kerlix makes a great sponge. Wound wrap? Kerlix. Piece of clean water-resistant paper to slap over a bubbling wound? Wrapping off a Kerlix.
So, plenty of Kerlix.
Road rash? Plenty of saline rinse (and a Kerlix) then a petroleum dressing to stabilize the damage until the ER can do a better job.
And possibly most essential: disinfectant cleansing towels, individually wrapped and big enough to grab. Those get used before if there’s time, during if the patient wants cleaning up, and definitely afterwards.
Because allergies & neurological reactivity, I stick with ethyl alcohol 70%.
Secure the mess. A gallon-sized zip bag or 2 for garbage and wrappings. Having a garbage bag is one of the things that separates rescuers from ego-trippers.
Oh, did I say that out loud? Sorry. I don’t want anyone not to stop & help… I just wish that, if they’re going to the effort of bringing gear, they could pick up a bit. Seeing blood and mess is not good for survivors & passers-by.
I got all these online for about $10 each, and also got a clear bag (with outside pockets) to put the kit in.
I’ll keep backstock at home.
What I don’t carry
Blood pressure readings, stethoscopes, and pulse oximetry are at-home and in-hospital concerns: we want to know if what we’re doing is working over time and refine our understanding of the body’sfunctional state.
In the field, the main issue is not whether the patient has rales or a murmur, but whether the lungs and heart are keeping them alive – a much simpler, larger-grained issue.
So, these tools might be nice to have, but for a noodle-noggin like me, they’re an added complication and a bunch of expensive equipment to lose at the scene.
In the field,
You need to keep pulse and respirations going,
the spine stable,
make sure the inside stuff stays inside
and in place,
and (as much as possible) the outside stuff stays out – or at least doesn’t move much where it’s inside the person.
And that, ladies and gentlebeings, is Advanced First Aid and Basic Life Support in a nutshell. You’re welcome 😊 Now go get that training… please?
I wrote the start of this for a fellow spoonie today and realized it’s a good starting point for a subject most people find overwhelming: reading medical science when you’re starting off as a non-scientist.
The article I cite first is a good example to start with, because it’s written well and has passages of clear English to work with. So…
I suggest reading the abstract and introduction. After that, just skim the first sentence of each paragraph, since (in science writing) that tells you what the paragraph is about.
If the first sentence makes no sense, skip that paragraph.
If you can figure out the first sentence, glance at the rest of the paragraph to see if there’s any more to glean. If not, move on..
It’s a skill
Reading science is a skill, and skills take time to master. That’s expected! Share what you glean with your doctor and ask them to help you understand it better.
Honestly — this isn’t to puff myself up, it’s just the nature of patients to dis themselves, so hear me out — if you can read my stuff and make out half of it, you are plenty smart and literate enough to start reading science. It’s just work and time, and the time will pass whatever we do, and the work will get easier with time. We just have to take care of ourselves and pick our time, when we’re chronically ill.
Using the right amount of honey
Doctors might give you attitude about comparing your Google search to their medical degree, but that’s not what you’re doing: you’re studying up on your condition, which is wise, and you’re expanding your info base on this thing that has imposed on your life, which is survival.
So, feel free to correct them sweetly, and don’t be afraid to pour some admiration on them if it helps them to re-focus on your information-gap.
The point is not who knows more overall. That’s not in question. When you talk to your doctor, you’re talking to someone who had to memorize, for instance, the Krebs cycle (here’s a partial explanation: https://www.medschoolcoach.com/the-krebs-cycle-mcat-biochemistry/) — so, yes, they have a depth and nuance of knowledge that’s nearly impossible to replicate without going to medical school.
They like having that acknowledged, because they take a lot of painful flak for not knowing everything about everybody’s illnesses all the time, and they need to know that you know what an effort they made to be able to work as a doctor.
So, it’s good to acknowledge that enormous effort.
Then they are usually able to hear you when you clarify that you’re not arguing with them, you’re trying to improve your understanding of this thing that affects you so profoundly. You trust them to help because of their knowledge.
Trust. Help. Knowledge.
These are keywords because they are core professional values for most doctors.
They’re important to acknowledge, and great to invoke and rely on.
That said… if you can’t rely on these characteristics in your doctor, even after you tell them that that’s what you need, then it might be time to find another doctor if you can. These core values are far more important than whether a doctor has good social skills or a good handshake.
When all is said and done, guess who has to live (or not) with the outcomes? It’s you. While the doctor is the subject-matter expert on the medical info around your condition, you are the subject-matter expert on being in your body and dealing with the fallout. There’s a degree of respect that should go both ways, though modern practice makes that hard.
The key to reading science is realizing — or at least, going ahead as if — you’re perfectly capable, and just need to practice. Science is written by humans, and you’re a human too.
1. You are a perfectly sensible person. If you’re reading this, you know how to read (or access translations from) English; also, you have access to a whole world of dictionaries. MedlinePlus is especially helpful in explaining concepts and helping us learn to read medical stuff.
2. Not all scientists can write well in English, and none of them write in English all the time. That’s okay. They went to school for a long time to get extra vocabulary and learn to do what they do; good for them. They’re still people, and they have to write in English at least some of the time. That’s where you can come in.
3. You can read the English just fine. Trust yourself and take time. With practice, you can learn more lingo over time, and get better at reading more science.
Just work from what you can understand now, and let that grow over time. You’ve got this.
Choosing credible sources
While you’re learning to read science, start where you can and work from there. As you get more confident and your understanding grows, you’ll learn to be choosier.
The gold standard for science info
When learning how to assess science, you’ll hear a lot about placebo-controlled, double-blind studies and that method is often important. This method of science gives us more reliable statistical probabilities about whether something will work in a certain situation. The statistical probabilities become reliable when several thousand people (“subjects”) have been tested, probably over many different studies.
With rare diseases, this is obviously pretty unlikely, so we have to work with less scientific certainty. C’est la vie.
Statistical probabilities have more limited value for patients than doctors, because we’re individuals, not pooled data. There used to be a phrase used in medical school: “Statistics mean nothing in the case of the individual.” This has gone by the wayside a bit, but it’s still true.
We may have to cast our nets further afield, because we’re looking for clues that might help us, personally. Be aware when you’re doing that, and put those science reports in your mental “hmm, maybe” folder.
I showed a case study that had a marvelous impact to one of my best doctors. He said to me, “If I could put that effect in a bottle, I would. It worked for that person, and we have no idea why. We do know that it doesn’t work for all these other people. Everybody’s different. Figuring out how to apply one thing to help a lot of people is our holy grail!” Lloyd Saberski, MD.
And that’s why doctors rely on the pooled data gathered from the scientific method. They want to help as many people as possible with each thing they try. Otherwise they fear they’ll spend too much time chasing rainbows.
We patients have to find our own rainbows, just as we have to count on our doctors to keep an eye on what’s statistically worth trying. It really is teamwork, and we both need to do our jobs.
What’s peer review?
Before you give a study to your doctor, it’s worth checking if it’s from a peer-reviewed journal. Don’t expect them to put too much stock in it otherwise.
Peer review means that other people in related fields have checked it over for sanity and validity. This is important for us patients, as well as the doctors who rely on the information.
You can Google whether the journal your article was first published in is a peer-reviewed journal. JAMA, BMJ, and the Lancet are all reliably peer-reviewed.
The value of literature reviews
Then, after a fair amount of studies have been done on a topic, there’s usually a literature review. This is when a qualified scientist takes a close look at all the studies, throws out the ones that were badly designed or poorly run (because bad technique creates bad data. “Garbage in, garbage out”) and writes an overview of what the current good science says.
They also discuss the strengths and weaknesses in the data, and suggest where future science funding could go, in light of the science so far.
Literature reviews are wonderful places to improve your knowledge of your disease/condition, expand your vocabulary, and get a lot better at understanding what goes into the science on your condition in the first place.
For instance, it used to be widely believed that most people with Complex Regional Pain Syndrome had had traumatic childhoods. (“Blame the parents” LOL.) There was a literature review done on about 30 years’ worth of studies, and it turned out that almost all of them were so badly-designed, poorly run, and calculated with so much bias, that nearly all of the studies had to be thrown out!
This taught me very important lessons:
– Just because most people say it, doesn’t mean it’s right, even if they should know better. This is an excellent attitude to have while reading science.
– Methods matter. You’ll learn over time how to sense whether the methods used are appropriate to the topic studied. The wrong method can lead to truly bogus results. The method has to fit the material.
– People lose their minds when they think about pain, as well as when they think about childhood trauma. In practical terms, this means I have to approach all normal (non-CRPS) people’s reasoning about my condition (which is characterized by relentless agony which a non-CRPS’d brain cannot even conceive of) with compassionate criticism. They do not know what it’s like, nor how to live with that pain and still think rationally. They’re not able to know. I don’t want them in a position where they do know, because that’ll mean their lives are as battered as mine is.
Therefore, every word they say has to be filtered through my awareness of how their minds get lit up by unreason, when they think about my pain. This, believe it or not, is perfectly natural. (Look up “amygdala hijack” for background on this mechanism.)
I survive because I’ve learned to substantially displace or ignore one of the most powerful primitive signals in the human body. That isn’t natural, and nor should it be.
These scientists mean well, without question. However, their logic is necessarily fractured when thinking about this, because they lack my tools for facing it. I need to dig into their data and methods before I can buy into their conclusions.
That’s good to know!
The conclusion of that literature review? CRPSers are likely (not guaranteed) to have had relatively eventful lives. Whether the events were traumatic or wonderful wasn’t relevant to our probability of developing CRPS.
In other words, we live in interesting times!
Where to find science to read
Google pubmed, and you’ll find the National Library of Medicine (NLM) division of the National Institutes of Health (NIH). This is a searchable science library which hosts articles from all around the world, in whatever language they were published in plus English. You can search any valid medical term — for instance, use the full name of your disease rather than its initials, for better results:
Here, you can see that I typed out “complex regional pain syndromes” instead of CRPS.
Some of them have full articles that are free to read (look for “Full Text Link”) …
The square brackets around the title tell you it originated in another language. The note under the title tells you which one. Good science is done all over the world. I’m glad we can access so much of it!This image shows what pops up when you touch the Full Text Link button.This is the original site that published this paper. As you can see, it’s in German here, but an English translation is also printed below the German version. For better or worse, English is the world language for science and medicine. I feel lucky being born into an English-speaking family, because it’s tough to learn. All those synonyms… and the crazy spelling!
…But most will show only the abstract, that is, the high-level overview of what the study is about. For our purposes, that’s the most important thing, so it gives you something useful to work with.
The interface gives you options for saving, sending, and citing the articles.
Touch the “…” button to get this helpful menu. If you get a free account with the NLM, you can use these to help you keep your studies organized and accessible.
To use these, just touch or click the one you want. They do exactly what they say they will.
If you touch one of the menu options that requires them to store the info on their side — like “Collections”, “Bibiography”, or “Citation Manager”– it will give you what you need to sign in (if you already have an account) and, at the very bottom, the option to “Sign up”:
The site is very helpful; just slow down and let yourself look at one thing at a time.
Once you feel more self-assured, try out Google Scholar. It’s smaller in some fields and generally less selective, but that can be good. I suggest saving it for later only because it’s got fewer guard-rails. We’re all different, though, and you might find that easier.
These two libraries aren’t identical. They do overlap.
A word about MeSH terms
MeSH stands for Medical Subject Heading. It’s a curated list of specific terms used in the National Institutes of Health materials. This kind of consistency is necessary when organizing a stupendous medical database like the National Library of Medicine.
MeSH terms are listed at the bottom of each article. If that article was useful, you can click the MeSH terms to have them saved to your PubMed search history:
I’ve circled the heading “MeSH Terms”, where it appears below other back-matter after the article.
Here’s a tip: when using their Search tool, don’t worry about capitalization, but be very particular about spaces and punctuation. Copy them exactly.
Using MeSH terms will improve your future searches, because it makes the most of the databases self-referencing mechanisms.
Trust your eyebrows
Best tool in your mental toolbox: when you’re reading sentences you know you do understand and, yet, you feel your eyebrows moving around on your forehead… that logic is not right.
The scientist might be misinformed, biased, pulling a fast one, or just plain wrong, but it doesn’t really matter which — that logic is not right. The underlying pattern-matching part of your brain can tell. That’s a primitive part of the brain and, when you’re paying attention to it, it’s extremely hard to fool!
Trust your eyebrows. If you want to, save the article and come back to it when you know more, so you can figure out where the problem is. I assure you, there is one. Your eyebrows don’t lie.
Feed your brain
Reading science is hard work and brains are big hungry things at the best of times. Feeding it right can be a huge help.
Meds & caffeine
If you’ve got attention problems, adjust your meds and caffeine to give you some extra focus when you’re reading science. It’s a lot more fun that way!
Smart produce
Green, blue, and purple foods are absolutely marvelous for brains — and pain. They feed the nerves, literally. I know you needed an excuse to eat more blackberries, blueberries, collard greens, and rocket salad, aw shucks.
I also know it’s not the cheapest stuff in the market. Explore your local options for farmer’s markets, roadside stands, produce sales, and organized assistance like EBT/food stamps and healthy-living programs giving more access to produce in the state, like they have in Massachusetts and California and other places.
This is a great opportunity to learn more about your condition and to bring what you’ve learned into your life (more on that later), and the upfront effort pays off so much in the end.
Body-safe phenylalanine
Obviously, if you’re prone to phenylketonuria, skip this part! IYK,YK.
Also, keep in mind that this can have an effect on some meds — sometimes giving them a boost, sometimes making things worse. Be sensible, do your due diligence, and study it up for yourself if you’re interested. Also, use your self-documentation skills: note what you do and what it does to you, change what needs to change, and take responsibility for the results of your choices. We are our own best caregivers.
I’m discussing the physiological activity of this thing with the weird name, and what I’ve found in my life and those closest to me. This isn’t any kind of assurance that it’ll do good for anyone else. Put it no further than “hmm, maybe” in your mental filing system and do your own further research to validate what I say and get an idea how it might work for you, yourself.
Basically, phenylalanine is a precursor to the “up” side of the neurotransmitter suite, dopamine and norepinephrine and even epinephrine (they all transform into each other as needed). These neurotransmitters carry messages among the parts of the brain involved in learning and memory. Taking in phenylalanine can have a truly astonishing effect on attention and memory WHEN you’ve got fundamental deficits, as do people with central and longstanding pain and some other conditions.
TL;DR — If it doesn’t make an obvious difference in less than an hour, you don’t need it.
I’ve trialed using aspartame, which went well for me. (Discussing my results with my doctor paved the way to including SNRIs in my med regime, to my considerable benefit.)
Food sources of phenylalanine
This is where hard cheese and smoked or processed meat shine. They’re rich natural sources of phenylalanine. They also have saturated fats which, in moderate doses, seem to help with pain and brain symptoms.
As a moderate part of a well-balanced diet, folks.
This hasn’t been well-studied; it’s one of those things you pick up after being involved with self-managed patients for over 30 years.
It doesn’t take much. I found that 2 or 3 bites of aged cheddar would absolutely light up my brain for 45 min to an hour and a half, depending on my deficit.
One pal of mine keeps meat jerky sticks on hand for study sessions. Aged cheese works better for me; jerky works better for them.
Now, unfortunately, mast cell activation problems have moved cheese and smoked meat out of my diet. When I need a brain boost, and it feels like cheese might help, I have to use a supplement instead.
Supplementing phenylalanine
It’s more measurable to use a supplement called DLPA, or d,l phenylalanine. It’s a blend of natural and manufactured forms of phenylalanine. One works better for pain and another for depression, but the blend seems well-tolerated and helps both. Phenylalanine suppresses certain inflammatory kinases and may help suppress pain at the spinal root (that is, right where the base of the peripheral nerve path comes out of the spine) as well as helping with mentation and cognition. (Sarcastic Sister notes: The recent science about it magically disappeared in the wake of the “war on pain meds” and I won’t pretend to understand why.)
There is a maximum recommended dose before it gets toxic, but if you’re seriously thinking about that, you’ll want to do your own studying, and might want to talk to your doctor about SNRI meds as a possibility. (The N is for norepinephrine, which phenylalanine supports.)
Why bother with learning how to read science?
Knowledge and understanding are the most powerful tools you can have for dealing with complex chronic health problems. It may or may not change what you have to deal with, but it certainly gives you more and wiser options about how to deal with it.
Even if you aren’t ready to start now, you can circle back around to this whenever you want. It’s attainable; you can do it. It’ll always be there (although individual articles and topics may come and go.)
The patients who learn the most and put that to work in their own lives, are the patients who most consistently beat the odds and have the best quality of life over time.
Therefore, better information leads to better living with complex chronic illness. My HIV patients taught me that 32 years ago at my first nursing job, and it’s truer than ever now.
Note: Nobody here says it’s easy. That said, our complex chronically ill lives are never easy.
Pretending that getting through the day is not, itself, almost a superhuman task is a disservice to our strength, so let’s just start off by recognizing that everything we do is really hard work.
Knowing that, I have found that the effort of learning and applying what we learn pays off a whole lot more than passively waiting to be saved and feeling rotten all the while — and still being wrecked & exhausted.
I can whole-heartedly recommend learning and figuring things out. It’s a winner.
My poor ol’ body has been carrying an unfair load for a long time. It does its very best, but the dice are loaded and, of course, aging intensifies all the problems and reduces all the healing mechanisms that keep it going.
Its experience as a physio-electro-mechanical system constantly in search of homeostasis – that is, a flexibly stable state — is seriously affected by the fact that it’s got these conditions which seem to think that homeostasis is a nice big target to shoot at and instability is fun. Woohoo!
I’m having what I suspect is a barrage of endocrine stuff which, among other things, makes my body’s pain and ability to adapt simply go phut.
CW: graphic descriptions of pain.
The bone pain triggered by walking is off the charts. Now I get one walk per week, it has to be less than 2 miles, I come home and go straight to sleep for 3-4 hours after, and have no attention or stamina the following day; I have to write off that time completely. My muscles and tendons feel like they’re filled with burning shards of glass. My leg bones feel like gelid columns of fire, like stiffened napalm, so that I’m half-afraid they’ll go squish and disintegrate under me, and who knows where that napalm would go if they did.
Honestly, that’s weird.
Activity is good. Moving is the secret of life.
Used to be.
My cycles still help at times. The recumbent trike, while it unloads my lower back beautifully, exacerbates my neck posture, which redounds into headaches for days. It also takes up a huge amount of space (it’s over a meter wide), so I have to stick to the wider paths and not try to use it in winter. However, it gave me back a lot of life last summer and fall. I had no idea what this year had in store for me, or honestly I’d have gotten something cheaper. Less safe, less comfortable (despite the neck thing), less of a joy to ride, because that trike is fantastic of its kind and fits like a glove… below the neck.
The cute retro bicycle? I didn’t sell it (though I probably should). I’ve been able to use it on some good days, but unfortunately I was still right about the road vibration on my spine and arms, and the pressure on my carpal tunnels. But it does fit into narrower spaces.
So, at this point, I have 3 modes of transport which used to work well, but this absolutely relentless business of being chronically ill has nearly, if not quite, taken them away.
Breathe, me. It’s just a problem.
It’s just a problem, and problems are meant to be solved.
I have a rowing machine which is currently my safest option for activity, although it doesn’t get me anywhere. It uses most of the body’s muscles, and I can tell because I can go for 6-8 minutes before I get sick and light-headed and the burning shards turn up. I’ve been trying to go up from 6 minutes without making myself sick, but my body can’t get past the 7.5-minute barrier without the spiculated pain all over and the desperate exhaustion for days. And yes, I incremented very slowly, but it just won’t work.
Weird. I cannot get used to that.
Time was I’d row for 20 minutes at “fit man” level, and go even longer in the water. I wanted to get a sea kayak and use it for transportation; I loved the motion of kayaking and could not imagine a better way to start or end the day. Middle-distance running (3 to 13 miles, depending on how much time I had) was a lot more affordable and accessible, so I did that instead. I was one of those annoying people who really enjoyed running.
I try not to think about that. These kinds of losses are about so much more than “hey, I could do this thing, yay me”; it’s more about how I fit into life and engaged with the world around me, about the tools I had available to help me through the hard times and illuminate the good ones. So much is out of reach.
That’s life.
Breathe, me.
I’ve got more specialist appointments crammed into the next few months than I’ve had in years; possibly ever. The science is a lot further along than it was when I was working as a nurse, thank goodness. The reason why I get heavier when I don’t eat enough is technically understood. The trouble lies in getting people to believe it and trust that I’m telling the truth.
It’s very weird to me to be disbelieved: I’m white, well-educated, have big blue honest eyes, and present info well. Now, as a fat middle-aged woman, apparently I’m inherently much less credible. Obviously, I must be kidding myself (if only!) and comfort eating (if only!) and clearly just being too lazy to work out (if only!)
I have no idea how that works, because you don’t get to middle age with significant illnesses by being stupid or incapable of self-care.
Breathe.
Keep breathing.
Problems are meant to be solved.
I’ve been thinking over solutions to the “how to be able to get things done outside the house” issue. I have partial solutions – all of them depending on others or on problematic systems.
For now, they’ll have to do. I’m glad I’ve got even them, of course. For all the towering cost of agony, uncertainty, and logistics, it beats having none.
Keep breathing.
I have a good home that I love. That’s one huge thing right, an unbearably difficult problem that has definitely been solved. From here, I’ll just have to figure out the rest.
Up until I got the injuries that precipitated CRPS, I used to run about 3.8 miles (about 6.1 km) up and down a redwood canyon most mornings. It was a highlight of the day: watching the light stain the tops of those glorious trees, waking the birds as it went, until the whole forest was filled with the noise of thousands of adorable featherbrains screaming their fool heads off, and the spiraling redwoods were soaked in molten gold.
I sprained my ankles a few times, leaving them with permanent puffy-pads. One time it was a bad sprain (I was pretty sure it was broken, given the huge swelling and rapid bruising) and I had to crawl and hop the last mile-and-a-bit, but I got there in the end because I’m just that kind of bonehead. I drove my stick-shift to the ER because, after all, the foot was still attached and all I had to do was push a little.
…Bonehead. (With, admittedly, an unusually high pain tolerance.)
Got poison oak a few times, until I went back to using poison-oak honey in my tea for the passive immunity.
I was kind of a sucker for a challenge, and I liked figuring things out.
I also liked the boards they had laid across a sandy furlong of the path to keep the sand from getting ploughed too far by the horses. The boards were just tall enough to make me hop them, and I liked pretending I was a horse trotting through a series of in-and-outs as I popped over them one after the other.
Great way to start the day.
And then what happened?
The repetitive stress injuries of long hours with keyboard and mouse, led to a series of wrist surgeries and complications in a couple of years. The CRPS diagnosis took longer.
What with all the roots and stones and the sun being in my eyes for the latter part of the run, I did stumble a lot. Having to catch myself went from being a diversion, to a nuisance, and rather suddenly to a terrifying possibility with crippling results. I dared not land on my wrists, because that could be the end of my career and my ability to support myself.
After recovering from surgery, cardiovascular exercise just caused too much swelling and inflammation — for years. I found that counterintuitive, which means illogical and, for me, extremely frustrating.
Fast forward 24 years
And now, it’s now. The ongoing heat wave (and flash floods) are making my usual afternoon walks impossible. My body refuses to stay vertical when the temp is a stunningly humid 84 degrees F (28.8 C). This body-system and wet-bulb temps just don’t get along.
Meanwhile, my thyroid supplement is starting to take hold. This means that, while I’m not up to normal energy by a long way, I crave exercise like a junkie with healthy tastes.
The only time I can be outside is before 8 am.
It usually takes me until then just to get out of bed, because of dysautonomia.
It’s hard to describe the sensation of challenging your dysautonomia, but if you turn on a powerful electric milk-frother and throw that down your stomach, while putting your head inside a vice and trying to breathe through a sodden sock, as flesh-eating termites devour your limbs… well, you still won’t know what it feels like, but you’ll at least be in the right ballpark.
I have an agreement with my body where it will let me get up early for Really Important Things, like fasting lab draws and airplane trips; I just have to pay for it the rest of the day.
I decided that it’s time to move exercise back into that category and hope it adapts appropriately. This is going to be rough, but the skills I’ve learned might make it work.
The skills
First thing is, No Surprises. I think about getting up and out early, as I’m getting ready for bed the night before. I think about the early hush and the freshness of morning air. I wonder what birds I’ll hear. I look forward to it sincerely.
Next thing is, Lower Barriers & Eliminate Excuses. Water is at my bedside and clothes & shoes get picked out the night before. I don’t want to have to think about doing it, I just want to grease the slide out the door.
Third thing is, Wake And Ground Deliberately. Once my eyes are willing to open, I drink at least half my pint of water and then organize my spine (a series of moves and physical therapy stretches that make my spine feel properly engaged), and then get all the way inside my skin (tapping down the top of my left arm, up the bottom of the left arm, down my side and front, down the front of my left leg, grab my foot until I can really feel it top and bottom, tap up the back of my leg, over my kiester and up my back and side; then, do exactly the same thing on my right side; then, tap up my neck — tapping on alternate sides — and use my fingertips over my face; rub through my scalp to get all the scalp muscles awake and ready to encase my skull today; and nice big sigh to turn over the air in my lungs.)
It sounds rough for CRPS, but I’ve been doing this for a long time and my brain knows what to expect. That’s important.
It also works to apply pain cream instead of tapping. It’s fine to skip over bits that don’t let you touch them. It’s fine to use a very soft touch, or stroke with something soft like a bit of plushy fabric or a feather.
It’s about input for the skin that helps the brain remember and rehearse where your body is in space. This is an important tool for pushing back on CRPS. It literally recaptures parts of your brain that have been turned into pain-sensation, and makes them remember how to do body-sensation instead. Worth pursuing and persisting with.
After this, I check in and, if body says it’s willing to try, I swing my feet onto the floor. I finish my water there, sitting on my bed.
I Check In as I Sit Up, nicely hydrated and with no surprises. If all is well, I get up and check in with my legs. If they’re OK holding me up and flexing, then I climb into clothes and shoes, and head out for my walk.
I planned my walk the night before (“no surprises” really helps the autonomic system to cope!) so there’s nothing to figure out as I grab my phone and keys and head out.
I adjust the distance I’ll go depending on how I feel when Im out. Today, I got wildly nauseous when I was about at half my intended distance. Vomiting tears open my saggital seam, that tough band that forms the middle crease in a 6-pack. (I vomit very hard.) So, I sat down and smoothed down the texture of my thoughts until the nausea passed.
Then I did some t’ai chi and qi gong, focusing on moves that stabilize the autonomic nervous system and ending with a “microcosmic orbit” series I always enjoy. (Let me know if you’d like video of any of that.)
Once my internal system was going better, I bowed out and returned, snapping pretty pictures on the way.
Summary & Conclusions
I’ve gone about the same distance both days, though yesterday’s walk took less time — I didn’t have to sit down. Today’s walk was more up & down. I think I’ll stay on level ground the rest of this week and see how that goes.
I’m now fighting the urge to go to sleep. I fell asleep at 8:30 am yesterday, after getting in from my walk, and slept until 1:30 pm. Waste of a day, IMHO.
Maintaining a diurnal cycle (regular sleep/wake and eating times) is very important for taking care of yourself with dysautonomia. So, now that my thyroid is not completely in the toilet, I’m going back to fighting to keep hold of the day. I want some life back.
To be perfectly frank, I’ve spent most of the last 9 or 10 months just waiting for each day to pass in the hope that another day will be better, and if not, at least I’ll be closer to the right treatment.
Enough is enough.
It’s hard work, but so is life: I’m starting to take back my days. That starts with regular activity, because nothing re-regulates a dysregulated system like regular activity.
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.
