Category: nutrition

The times, they are a-changing

Isy / / activity, ANS and fight-or-flight, care team, critical thinking, Dept. of Blith. Obv., humor, imp-possible, marathon, moving/traveling, nature, nutrition, perspective, politics, radical presence/radical acceptance, realpolitik, survival

Without descending into the morass of modern U. S. history and politics, let’s just say that I’d like the first months – up to half a year – of the new regime to happen with me being somewhere bearable, where good produce is a lot cheaper and the medical care both stable and affordable.

None of this is likely here, where my food prices rose about 30% during the harvest season and there is much loose talk and planned chaos around Medicare and the dole (which I depend on to stay alive) – not to mention the cost of everything rising by 15-60%.

The pundits and those who follow them tell me not to worry, because there are rules and procedures “they” have to follow.

Given the Mump track records regarding rules and procedures, all I can do is smile sweetly so as not to worry my loved ones, and let my mental gears turn more quietly.

Hot tip #1: a tariff is a tax. These get passed on to the consumers, not sucked up by the companies from countries exporting to us.

Hot tip #2: as we’ve seen so clearly over the past 5 years, industries don’t just raise costs in line with their own expenses, but jack them up to see just how much the market will bear. Given a captive market, this has gotten really ugly. Remember eggs last year? The sub-prime lending fiasco leading to the 2008-9 crash? Yeah, it’s an established pattern.

So anyway… here I am: if I stay in one place, I’ll be wrestling hard with un-meetable expenses (my dietary needs are simple, but not cheap) and a constantly-cycling urge to run away. That’s neither stable, healthy, nor fun. Been there, did that, threw away the t-shirt.

I didn’t grow up in one place, or even one country. I’m not mentally stuck here, and I don’t believe I have to put up with the scrambling anxiety or insufferable expenses to come as the Mump Regime and its trail of chaos gets itself through the initial reality-checks.

I’ve been toying with the idea that it’s healthful and good to be warm, stable, and happy. That takes adjusting to, because so much of what makes me feel anchored to the world is about work. I love to be productive. It makes me feel superbly grounded to be useful/helpful to others. This is very compelling… but as far as my daily choices go, doesn’t have a lot to do with being warm, stable, and happy.

It does have to do with abusing my eyes and attention with falling down back-lit rabbit-holes and trying to turn the swarms of information floating around in my brain into streams of relevant words, pertinent to the question I’ve just read.

But I’ve got serious limits and, as it turns out, I am much more useful and productive after I’ve been taking really good care of myself and playing and recreating and being happy outdoors – a lot.

This doesn’t sound like computer-gazing, which is how most of my work happens.

This focus on making myself happy is a weird concept, and I’m still working out a lot of the details. I mean, not even details – I haven’t settled on where to start; even my departure date is unfixed. Getting the right people in to keep my place clean & warm while I’m gone is kind of a big deal too. I’m not prepared to move and won’t sacrifice my sweet little home – not until I’ve got a much better offer in hand, anyway!

Anything could happen. I’m trying to keep breathing properly as I say that.

Maybe it’s time to take a sabbatical…

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>

 

Olive oil all the time

Isy / / basics, nutrition, self-care, what works

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.

Good olive oil helps. … It’s the little things.

My job as a complex chronic patient

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

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

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

Anecdote from the front lines..

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

Because we weren’t abandoned enough already…

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

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

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

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

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

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

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

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

Back to the job of being a complex chronic patient.

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

Three key principles

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

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

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

Three different sets of jobs

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

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

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

They’re perfectly straightforward.

My (the patient’s) job

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

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

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

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

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

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

Significant other’s job

shows images suggesting love, friendship, and work

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

Believe me

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

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

Avoid making this harder

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

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

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

Provider’s job

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

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

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

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

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

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

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

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

Here is what I hope for, from my providers:

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

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

All 3 working together = best possible situation

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

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

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

And here we are

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

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

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

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

crab nebula, tuned to look like brain activity

May 2023 on the Back 40

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

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

Cultural note:

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

Good metaphor!

Areas of life…

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

Endocrinology

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

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

Plus a thyroid med I tolerate well.

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

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

And lots of sleeping.

Dr:

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

G.I.

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

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

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

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

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

Dr:

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

Brain & pain

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

CRPS-specific

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

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

I hope.

Fibro pain

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

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

Dr:

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

Ehlers-Danlos Syndrome

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

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

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

Dr:

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

Life

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

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

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

Major events

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

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

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

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

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

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

*Huge* yays!

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

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

Conclusion

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

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

More on environmental insults on a hyper-reactive system

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

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

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

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

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

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

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

Reactions set off aaaaaall the other clowns in the circus.

Nasty bunch of customers!

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

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

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

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

Yeah… but no.

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

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

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

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

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

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

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

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

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

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

Competing needs vs. Layered needs

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

CW: food & size & related topics.

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

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

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

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

I know, right? Who knew???

Horse & woman laughing hysterically

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

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

I feel profoundly rewarded.

Competing needs: no brassicas; lots of winter veg.

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

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

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

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

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

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

This obviously needs to change.

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

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

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

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

 

Putting words to the problems

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

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

Stone angel with hands clasped in prayer, standing on a pillar, sun like a glorious halo

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

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

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

I mean… I… ay, ay, ay.

TW: Describing the usually silent reality

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

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

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

Letter stating what my helpers do

Dear Gate Keeper,

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

Cooking:

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

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

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

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

Here’s what Person A does for me:

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

 

Housekeeping:

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

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

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

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

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

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

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

Please let me know if you need any supporting documents.

 

Thank you so very much for your time…

Low-histamine shopping list and recipes

Isy / / adaptation, basics, food allergies, imp-possible, money, nutrition, recipes, self-care

Ladies and gentlebeings, here’s what I’ve come to after a 6 month period of, firstly, a strict diet of tapioca, carrots, butternut, apples, and chicken; then, careful reading about *tested* foods on *living* humans, plus extensive empirical testing on my own particular system. The fruits (, veg, herbs, and meats) of this work lies below. Foods that I currently remember as improving the histamine picture have a +.

Note: I’m focusing on what I *can* eat as part of a low-histamine diet. Where my diet is restricted for other reasons, I say so, in order to point out where there’s obviously something for others to explore.

I don’t mention higher-histamine foods nor do I go into the details of what makes a food low-histamine (which can involve mast cell triggering, histamine levels within the food, salicylates, non-food triggers that raise the background level of reactivity, whether fermentation or aging is inevitably part of the process – as with beef – and so on) because that’s a whole ‘n’other article, and a bit beyond my bludgeoned brain at the mo’.

Caveat emptor: we’re all a bit different. This is why empirical testing, tracking results for yourself, and being able to notice when things change, is so important. My list is basically ok in principle, but it won’t be right for everybody, and may not even be right for me in a couple of years.

Besides “everything organic” and “everything fresh”, the third leg of this mow-histamine diet is “everything freezable frozen”, because leftovers and meats start making histamines real quick. So, freezing and then defrosring in the microwave is the only safe way to go with yhese things.

I let stuff that’s fresh off the stove or out of the oven freeze up on the top shelf (usually atop the “buns” box) and then move it to its rightful place:

The magic lists

Everything, absolutely everything, is super fresh and organic. This is part of the deal with low-histamine foods, and I’m ever so grateful that it’s possible right now. (Thank you to the federal SNAP/Food Stamps system and to HIP, the produce-enhancing state funding system for low-income people, plus an outstanding local farmer’s market that works with these programs!)

Produce:

    • +Apples, fresh local low-spray or organic (by low-spray, I mean they get sprayed twice, once when the buds set and once when the fruit sets. I find I tolerate this just fine, as long as the apples aren’t sprayed for storage)
    • Fresh cider, UV treated to impede fermentation (when I’m not frail)
    • Blueberries, wild
    • Cranberries
    • Peaches, when not frail
    • Plums, most kinds, when not frail
    • Cherries, when not frail
    • Mangos (not bruised)
    • Spring onions (some people are good with sweet white onions but not spring onions, and some can’t tolerate any onions, so YMMV)
    • Garlic heads (as above)
    • Sweet peppers (I find red bells and bullhorn peppers easiest to digest)
    • +Asparagus
    • Cauliflower, if good (no black or yellowed spots)
    • Soft/summer squash: marrows, zucchini, yellow crookneck (scoop out seeds if currently fragile)
    • Different squash: delicata, pattypan (seeded as above)
    • Beet greens
    • Radishes (which I like to steam)
    • Celery


    I can’t eat leafy cabbages because my fragile thyroid poops out if I do: mustard greens, collards, chard, bok choy, napa, savoy, radicchio, kale, green and purple cabbages, and other winter-harvest yumminess! Check them out for yourself, as long as your thyroid and gut is up to the job.

    Protein:

    • Chicken, turkey, pork, lamb (frozen straight off the block; another farmer’s market item here) (NOT ground: that generates histamine, possibly from the extensive cell damage)
    • Eggs (from scratching, soy-free hens)

    I can’t eat lentils, beans, or peas due to gastroparesis, but you lucky so-and-sos who can might want to read up & experiment to see which ones are ok for you.

    Lipids:

    These have to be fresh and not have any whiff of rancidity. Since all my food is fresh now, these and my protein sources are my only source of lipids for my brain and spine:

    • Olive oil
    • Grassfed (or Kerrygold) fresh butter, not raw
    • Avocado oil
    • Drippings from cooking meats, frozen right out of the pan. These are *wonderful* for cooking veggies with!
    • Coconut oil (when not frail)

    Carbohydrate rich:

    • Rice (plain whites, basmati, or jasmine are all ok for me; brown and sweet rice are not for frail times, but ok in small doses at other times)
    • Sweet potatoes, any kind but Japanese (which I think I did to myself by eating them too often at one time! Darn it)
    • Tapioca/yucca/manioc, same vegetable; fantastic for a sluggish gut & delicious made with apple cider
    • Farmer’s market honey
    • Sugars: panela, jaggury, coconut (all of them unrefined & mineral-rich, so YMMV)
    • Beets – with greens (I use the stems to flavor soups and I steam the greens or drop them on top of a batch of stir fry; delicious!)
    • Carrots, lots, as they go with everything
    • Broccoli
    • Parsnips, if I’m not currently frail (they’ve got such good nutrition I keep them on my shopping list, but they’re the first to go if I’m not up to the mast impact)
    • Celeriac
    • Hard/winter squash: butternut, acorn, kabocha (NOT pumpkin or spaghetti squash)

    Rice is my only grain. Some do ok with sorghum or buckwheat or some other things, but it’s hard on me in anything but small doses & when I’m not reactive.

    Flavorings and spices

    I can do, almost all fresh:

    • Parsley
    • Basil
    • Dandelion greens
    • Cilantro
    • Sumac (this is dried)
    • Bay leaf (dried)
    • Rosemary
    • Sea salt
    • Mined salts: Kosher, pink salts
    • Garlic
    • Ginger
    • Turmeric
    • Cedar sprig (fantastic when cooking chicken or buttered black beans, not that I can eat the beans any more)
    • Cumin (when not fragile)

    Here’s the fun part…

    Recipes

    The web is international, and I try to work with that 🙂 Please be aware that, as my cooking was learned in US-origin households and restaurants, I cook by volume rather than weight. Measurements are noted accordingly. (I’m aware of the flaws in this system, so I use recipes that can accommodate the “fudge factor.”)

    These are much-loved ingredients I make ahead:

    “Ginger Fabulous”

    I almost took a picture of this, but it just looked brown on camera. It’s lovely earthy honey-colors IRL.

    • Peels from 4-6 apples (may freeze ahead)
    • Ginger x6-8 thumbs (a bit bigger than my smallish thumb, anyway)
    • Farmer’s market local honey, ~1/2 cup [120 ml]
    • Sugar (panela or jaggury for me; light brown or raw is probably good), same volume as honey
    • 1 pint [500 ml] cider
    • Optional: Dash of clove, if you’re ok with it

    Slice ginger to 1/8″ or less.
    Chop apple peels to about 3/4″ segments.
    Put everything in a good pot.
    Simmer until all the ginger is translucent, usually ~ 1/2 hour.
    Let cool.
    Try to keep enough for later; I find it hard to stop taste-testing.
    Uses:
    Use as is for preserves, or process/blenderise to rough texture for marinade, jam, or even hot drink if you don’t mind a bit of dessert in the bottom.

    “Super Greens”

    Here they are mixed into buns:

    • Parsley x6-8 bunches
    • Basil x3 bunches
    • Dandelion, Italian/less bitter (has spikier leaves), x1

    Chop parsley and the leafier part of dandelion greens to 1/2″ lengths.
    Pick basil leaves off stems and chop a bit smaller than that.
    (Wrap the stems in foil and keep in freezer for flavoring soups, as their flavors cook down delightfully.)
    Throw it all in a processor and chop very fine. (I have to go 1 head of parsley & equivalent of others at a time, because my processor is not that big.)
    Package up into ice trays, or in foil or paper by ~dessert spoon or ~50 ml sizes and freeze.
    Uses:
    1 of these dresses 2 to 4 scrambled eggs or omelettes, depending on taste.
    I take a batch and mix it with softened Kerrygold/grassfed (not cultured!) butter, to a ratio of 1 butter : 1 pressed-down greens by volume, and beat well into a super healthy spread. I refrigerate enough for a few days and freeze the rest. Way more yummy than something this healthy should be!

    “Isy’s elf-rising flour”

    This recipe is taken from alittleinsanity.com, but I removed the xanthan gum, use non-fungal risers, and make with organic flour ingredients. Its ingredients are friendly to systems dealing with inflammation and histamine problems. It makes buns, quickbreads, and muffins very quick & easy to put together. (I haven’t tried it with pancakes because I can’t limit my intake of pancakes sufficiently & don’t like to feel that sick, so doing without is my best bet rn.)

    This recipe uses weights because, for the most part, the ingredients are often packaged in these sizes so you just dump out a bag of each. Easy!

    • 24 oz [0.7 kg] brown rice flour, fine
    • 24 oz [0.7 kg] white rice flour, fine
    • 24 oz [0.7 kg] sweet white rice flour
    • 20 oz [0.6 kg] tapioca flour/starch (same thing)
    • 2+1/2 [37.5 ml] Tablespoons baking soda
    • 1 Tablespoon [15 ml] baking powder (I push this through a tea strainer to get all the clumps worked out. I abhor the taste of baking powder clumps)
    • 2 Tablespoons [30 ml] salt

    Blend carefully in a huge pot. I use both a paddle and a whisk, gently.
    Take the time to get everything *very thoroughly blended*.
    This makes a gallon plus 1.5 cups, or about 4 liters.

    Uses:
    This makes a forgiving dough, and will generally work out fine.

    2.5 cups [or about 750 ml] of flour will take:

    • 5 to 7 tablespoons[75-100 ml] of butter (maybe more; tell us if you try it?)
    • 1/3 cup [80 ml] liquid
    • 1/4 cup [60 ml] to 1/2 cup [120 ml] of sugar
    • Eggs, 1 to 4…

    If you use 1 egg per 2.5 cups of flour mix, it gives a texture suitable for scones or gf (American) biscuits.
    If you use 3-4 eggs per 2.5 cups of flour mix, it results in a soft, puffier texture with more volume, as for quickbreads [teacakes] or (American) muffins.
    Additions
    It adapts well: you can use water, broth, milk, or cider as the liquid, and can add as little as 1/2 cup [120 ml] or as much as 1+1/4 cups [300 ml] of diced chicken or Super Greens or wild blueberries – with or without some Ginger Fabulous – and still get a wonderful result.

    It bakes in 12-15 muffin tins (depending on the extras) at 350*F [175*C] for 16 to 20 minutes in my oven, or until there’s no steam in the scent from the oven / toothpick comes out dry.

    Here are chicken buns & blueberry teacakes in their freezer box. Defrost & warm by microwave on low for 30 seconds on top and 30 seconds on bottom.

    I’m still working out a recipe for lembas, but it’s only a matter of time. Buns made from this are light & crumbly all right, and certainly very filling!

First aid kit – homeopathic side

Isy / / basics, brain care, CRPS knock-on effects, meds/drugs, neurotransmitters, nutrition, radical presence/radical acceptance, self-care, supplements, what works

I’d like to eschew certain arguments altogether. This is not about dissing or justifying one approach over others. Every one of us has to figure out what works for our own individual selves. Anybody who feels they have the right or duty to argue otherwise, please read the last 3 paragraphs first. Thank you!

My homeopathic first aid kit

I used to keep just Arnica montana and Symphytum officinale around. As an old trauma nurse & athletic over-doer, dealing with sprains, bruises, and occasional bone bruises & minor fractures was the main point, and these two remedies are outstanding.

Then Zicam became over-the-counter shortly after Oscillococcinum hit the market during flu season, followed a year or two later by the blend Cold Calm, and winters got a lot less snurgee. So that was another win. It was interesting to finally care whether a virus came on fast or slow, because until then, it didn’t matter, because I was in for 10 to 14 days of aching yukiness either way. (Generally speaking, if it hits fast, it’s flu; if it comes on over a day or three, it’s a cold.)

It was good to be young! And healthier! XD

The current cabinet

Now I’ve got a lot more to deal with, including lower and fewer possibilities for meds, herbs, and food. Homeopathics are taking up more of my “treatment options” space as other things fall away and conventional therapeutics have less to do for me.

Here’s my current lineup:

Pain

Body pain: Arnica, 6c or 30c, or both starting with 30c and going down.

Bone pain*: still evolving this solution. Currently isolating effects of Symphytum o.(absolutely brilliant for previous fractures and bone aches in early CRPS) vs. Bryonia (commonly used for my type of bone pain) vs. Calcarea flourica (helped with aching bones 15 years ago, on occasions when Symphytum wasn’t helpful.)

Muscle cramps and spasms: Magnesium phosphorica, known as Mag phos by its many fans, 6c for pre-spasm tension or sudden onset, 30c for deeper or more persistent cramping.

Labeled as a remedy for menstrual cramps, I have found it to be outstanding for my skeletal muscles and intestinal muscles as well — as long as:

  • My serum magnesium is ok (I supplement with chelated magnesium twice a week, since my body plows through this electrolyte at a consistent rate);
  • My other electrolytes are ok, including calcium, and my vitamin D is high enough to regulate the calcium properly;
  • My hydration is adequate. If I can’t experience thirst normally, I blink and feel for discomfort in my eyelids, or pinch up the skin on the back of my hand and give it 1/10 of a second to return to flat. (I need to stay in the upper level of hydration for the sale of my brain & spine — as well as my kidneys, which work hard to deal with my meds.)

Note of caution: Muscle spasms are not necessarily a simple fix. Start with the simple thing and work out what your underlying tendencies are: dehydration is usually easy to sort out, and you’ll know if it helps within a day; magnesium/calcium/electrolyte levels need a simple blood test to discover; once you’ve got good info to work from, you’ll know if your next step is supplementation, medication, homeopathy, or a call to your doctor.

So, please, start with getting good objective info so you know what your particular system is likely to need when your muscles cramp. There is definitely such a thing as too much dietary magnesium, so throwing magnesium chelates at spasms can make things considerably worse if that’s not the underlying problem!

G.I.

Colic & abdominal cramps: Mag phos for the win! See above.

Constipation: As I’ve recently been reminded… first, call your pharmacist, and ask about your med side effects. Sigh, so easy to do, so hard to remember to do.

Homeopathically, Sepia and Alumina took turns being helpful, but didn’t complete the turnaround I needed.

In the end, getting off a key med, while also minimizing histamine release in my gut, while also supporting digestion with a prescribed suite of digestive enzymes and some Chinese herbs, while also eating tapioca with nothing in it but a bit of coconut sugar nearly every darned day for 6 weeks… turned that intransigent problem right around. Plus, Mag phos for the abdominal cramps.

This is a 5-star example of a multi-front approach: med revision, diet revision, toxicity reduction, and a combination of supportive measures: prescription, dietary, herbal, and homeopathic.

Life, at this end, isn’t simple. Simple solutions often aren’t enough. That’s why I value the “multi-factor” approach: nothing works that well in isolation, so I often wind up getting everything possible to head in the desired direction.

Brain

“Heated” brain feeling & stormy sensory sensitivity: still best with herbal concentrated lemon balm, which is effective & reasonable. Good homeopathic fallbacks (for me) are Silicea or Kali phosphorica, depending on accompanying feeling of irritability (Silicea) or dullness (Kali phos.).

*Bone pain treatment note: The bone pain started up as Savella cleared my system. My bowels got back into gear over the same span of time. This week, I trialled a small dose (12.5 mg twice daily) of Savella to see what it did; in 2 days, the bone pain decreased by ~80% — and my bowels shut down at the same time, leaving me with the poor sleep, delayed recovery, body pain, and joint pain that comes with the inflammatory bloom that produces.

I might give it one more shot, but honestly, there was no other change involved and I hate torturing myself.

I’ve learned what it’s like to survive without a working gut,  and it’s too hard. The knock-on effects of pain, fog, and allergic activity is brutal.

So, my current personal project is to figure out another way to manage bone pain. It’s just awful, but a stalled gut is still worse.

Diet and nutrition has brought me a very long way forward, but at the moment, there’s not much more it can do. I’ve had a squeaky clean diet for years, but now it’s so carefully tuned it could probably hit high C. This may change, and if I have to do something else, I’ll figure it out when the time comes.

Pharmaceuticals have come a long, long way, especially these amazing mixed-SNRI neurotransmitter supporters. However, between my genetic tweaks affecting med assimilation and the natural effects of biochemistry, there isn’t an obvious way forward here, now that Savella has washed out for me.

Herbs are so built into my life that it’s a specific mental effort to think what else I could try here. Given that herbs A. Require frequent dosing and B. Do have side effects and I’m exhausted with side effects right now, that currently there’s nothing herbal I know of that I’m willing to try.

Homeopathics have a history of being more predictable, consistent, reliable, and safer for me than herbs and pharmaceuticals (though I owe my life to pharmaceuticals and am not dissing them, just facing another tough reality). There are several possibilities to explore, so that’s where the next step leads me.

Onward!

Felix the Cat with bag of tricks and scientist

Last 3 paragraphs

My own approach is absolutely comprehensive — pharmaceutical, nutritional, dietetic, physical, psychological, mental, herbal, artistic, behavioral, and energetic techniques all play a part, and there’s peer-reviewed science behind over 90% of what I do. Every single intervention gets tested on me — and assessed for benefit and drawbacks — before being incorporated, and gets retested at least yearly.

I’m a diligent empiricist; as I’m responsible for exactly 1 clinical case, that is the most rational approach. Empirical science is the only method of scientific inquiry which consistently considers the individual case.

Sarcastic Sister adds:

Anyone who sincerely & totally refutes the value of homeopathic remedies is welcome to borrow my body for a week or two & see what works for themselves; I’d be happy to borrow theirs while they figure it out.