First aid kit – homeopathic side

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.

Share this article:

New set of wheels

I walk everywhere I need to go. I finally tried the bus, and honestly, it could have been worse — but the base of my spine is still not prepared to put up with more than about a mile of that banging.

The problem with walking is that my legs are getting really good at “Burning Bones” — one of those trippy CRPS nerve games where it feels like the bones themselves are covered in & consisting of fire.

I used to wonder what burning bones were like and felt lucky for not having experienced it — and highly inclined to keep hammering massive doses of D3 to keep my blood levels in normal range. (D3 helps keep calcium in the bones & teeth, where it belongs, and prevents excess calcium from causing nerves to misbehave, among other things.)

Well, this clears *that* up! I know exactly what burning bone pain feels like now. But still, I’m well aware it could be so much worse: I just get little yellow flames, not big blue-based barn-burning flames. Those are definitely worse. I don’t know if I could keep walking through big blue flames.

Do I walk through the little yellow ones?

Go on, guess.

Shows woman flat on floor, with woozles coming out of her head
Creative Commons share-alike attribution license, credit livinganyway.com.

Carrying the bag I use as a purse adds a few pounds to the load on my legs, hips, and knees, and a bag or two of groceries adds about another 10-12, however carefully chosen they are for weight.

Plus, I’ve been slinging those from my shoulders — better than a backpack, which puts the stress right across the anterior nerve plexus for the shoulders, but — as we say about little yellow flames for bones — is, um, less than ideal.

I have tried every grocery cart conceived of in the last decade. The vibration on my hotwired palms is like hanging onto a working jackhammer covered in razorwire. (I don’t recommend doing that, however much you want to see what this is really like.)

I stared longingly at jogging strollers all year.

I designed my own grocery conveyance, priced the parts, and realized I had just designed a jogging stroller and it would cost about as much.

I haunted Craigslist and Freecycle for weeks, until an add for a Schwinn jogging stroller popped up.

Shows cupholder bracket affixed to handle of stroller

Is that a cushy push or what? 😀

And, guess what, it has pockets! — I mean, cupholders! (Cupholders are definitely the pockets of non-clothing items, say I.)

For once, I kept myself from saying *just how much* this means to me and why, because who wants to hear sob stories, right? I handed over the very reasonable sum, thanked him 4 times but not nearly enough, and sailed away.

Even though my legs are starting up the burning bones awfully quick today, in every other respect I feel like I’m walking on air.

I can pick my own *groceries*! OMG!!! And *get them home* with minimal further damage! WOOHOOO!!

Life is good.

Thank goodness for that sweet family who let this go ❤, and for craigslist.org for linking our complementary needs.

Share this article:

Planning ahead

I’m getting an allergy panel in a month or so. This means I have to be off my antihistamine for 5 days before.

THAT means I have to start tapering off ~2 weeks ahead of time; 3 weeks would be safer, but I don’t see how to endure over 3.5 weeks total with that level of obnoxious symptomatology and brittle physical fragility. 

That said, I *really* want the data.

You might ask, “Why?” (Or possibly, depending on how familiar you are with the twisted satire that is my health record, “WhyTF?? Are you *crazy*??” As if you didn’t already have a definite opinion about *that*! 😏) 

Well, here goes…

Flash back to 2013

Years ago, under the tutelage of a late & very lamented friend who Knew Mast Cell Stuff like I know the back of my hands, I finally (in 2013) did my empirical testing around whether mast cell & histamine activation-like signs & symptoms I was struggling with, would respond to treatment. 

Step 1: reducing & eliminating competing problems

I had already gotten excellent neurological & biofeedback training, which worked well for many things (Go, Pain Psychologist Dr Faye Weinstein! I got tremendous and lasting benefits from my work with her. Highly recommended. “Stabilize, stabilize, stabilize.”) While I had excellent results from the neuro stabilization, it didn’t make much difference to the allergies, a particular “flavor” of brain fog, food & digestion issues, or the usual allergy circus of itching facial orifices & random urticaria.

The histological issues persisted most obnoxiously. This was 9 years ago when the mast cell activation diagnoses were not as well developed, and at a time that, though I had access to an enormous pool of well trained doctors, I was already up to my hip-waders in the maximum number of appointments I was able to keep. 

What do you think? Pursuing testing and inquiry into a set of issues that were still widely considered to be a matter of hysteria? — For a middle-aged woman with pain diseases and 60 extra pounds of weight, do you think *that* would have been a good use of my limited time? 

Smh!

So, I went empirical on it.

Two methods of science: “empirical” and “scientific” method

Both methods are scientific, in that they require diligent examination & limiting of variables as well as testing, retesting, and recording results accurately. 

(But hey, that nomenclature isn’t confusing, right? <eyeroll>)

It boils down to this: 

Empirical method: what works in this case in particular? 

Scientific method: what’s generally likely to work in many cases?

The empirical method of science is brilliant on a case-by-case basis, there’s nothing better; but avoid making assumptions beyond that case. The scientific method of science depends on hundreds, ultimately thousands, of cases, and from all those together, it generates statistical probabilities about what’s *likely* to work under certain circumstances as a general rule. It’s much more widely applied, but explicitly *not*  individualized.

This is why, as someone dealing with multiple rare issues, I test everything ~3 times on myself before deciding if it’s a good idea for my particular situation.

Now the next section will make more sense.

Right med, right dose, right time

I tried several antihistamines to see which one helped me the most. 

Then I experimented with dosing to see how much it took to get me functional most of the time. 

Then I experimented further with once-daily dosing, or dividing the dose in two and taking it twice daily. It had better results (and no “oog” feeling) if I took it twice a day.

In the end, I wound up on one of the top 3 meds for mast cell/histamine issues. I also wound up at the common dose for those with a solid case of Mast Cell Activation Disorder. (The twice-daily dosing was my own special twist, but I’ve since learned it’s not that uncommon among “masties”, as people with mast cell dysfunctions refer to themselves.)

Without any further ado, my doctors added MCAD to my list of diagnoses.

(As with every med and supplement, I continued testing it every 6 months or so, backing off the dose and looking for the minimum effective dose, but stopped doing this because of … we’ll get to that.)

But, frankly, a differential diagnosis doesn’t yield enough info to change anything causative. If I can nail specific allergens — or culprits — and receive treatments that can actually reverse this ghastly crap, that would be *great*!

So, I really want the data.

Histamines & tendon problems

I stopped trying to cut down on the antihistamines a couple of years ago, because I couldn’t bear any more injuries that threatened my mobility.

“Mobility? Huh??” I hear you ask.

One of the things the antihistamine helped with was tissue-tearing. I didn’t expect that, but was delighted not to be twisting my ankles on uneven ground or sudden jumps away from traffic, then having to crawl or scoot home because hopping on 1 foot when your tendons don’t work is a terrible idea.

As I thought about it, it made sense though…

Histology review:

Q: What happens when your histamines are active?

A: Among other things, inflammation in and around your cells.

Q: What happens when cells get inflamed?

A: Among other things, cell walls get weak and leaky.

Q: What happens when connective tissue cells get weak?

A: They tear more easily. 

Ah hah!

So, yeah, maybe MCAD could weaken my connective tissue after all — especially because, for one thing, I started out hyperflexible, which is a setup for these kinds of problems; and for another thing, the fibrosity of fibromyalgia has made my connective tissue more brittle & easier to tear.

Ducky! Another hat-trick! 🤣🤠

Back to the testing

This is the test where they put a grid on your back and scratch or inject tiny amounts of different stuff into your skin. In about 20 minutes, whatever you’re going to react to should be a nice hot ruddy lump, technically a “wheal”. 

For this to happen, your body has to have nothing interfering with histamine reactions — in other words, no anti-histamines.

Since the antihistamine I wound up on has a long half-life, I have to be off it for 5 full days before testing.

Prepping for the test

Because going from full dose to no dose means I can barely get out of bed safely (see “Histamines & tendon problems” above), I have to taper down. I’ve done this before, usually to eke out my meds when my supply is running late. It’s familiar territory. 

Experience tells me that:

  • I have to taper at a rate of no more than 12.5% of my daily dose at a time.
  • I’m best off (in this terrible sitiation) stopping for 3 days at each new dose before the next step down.

This means that it would take 20 days to taper off to 0 (shorting the last step to 2 days instead of 3) *and then* 5 more days at 0.

Doing this with tissues crying, “Go on — tear me!” And every bite of food, breath of air, bit of furniture, bump in the sidewalk, or tussock of grass all giggling in evil tones (so to speak), eager to hear my muffled yells.

Yeah. Tasteless spoofing aside, that’s not a great situation to spend 3.5 weeks in.

Then, of course, as soon as I can horse down my meds again, it’ll be several days before I qualify as human.

Then, about another 1 to 3 weeks before I get back up to baseline function.

My Halloween costume will require very little makeup for me to pass as a zombie, so that’s one bonus.

What a month-and-a-half to look forward to!

Is all this really necessary?

Well… I really, *really* want the data. If this is at all reversible, wouldn’t that be worth a few weeks of howl-worthy endurance?

Obviously, yes… but I don’t think I could keep at it for over a month. I’m good at enduring, but I’ve got hard limits.

I really, *really* want the data.

Managing towards the best possible outcome 

My doc prescribed me some prednisone to take in order to avoid winding up in the hospital over this. I look at the results of my last round of prednisone — the change in my face and the truly shocking stretch marks (which made my dermatologists blanch and leap back, no kidding) — and I consider this truly last-ditch stuff. Beats nothing, I guess. It might keep me out of our ER.

There are dietary issues to consider. (What follows is a brain-dump from my years of querying doctors and reading, as well as my empirical food testing.)

Food matters: boost the signal

I know that the system being tested (mine) can respond more truthfully if it’s familiar with the molecule being tested. For instance, I haven’t eaten gluten in years, so this test might possibly come up negative to that. 

Doesn’t mean that, the next time I walk past a bakery without my mask on, I won’t get an itchy swollen throat and everything won’t turn white for a bit, it just means my body had enough of a break to stand down, and will need to re-arm.

With that in mind, I might grab a couple of saltines before I go in. If I could calm the gluten circus enough to just be safer walking around, that would be awesome.

Food matters: reduce the noise

I’m getting off the aged and fermented food, because that makes such a dramatic difference in my pain and swelling. This includes seafood and beef and anything packaged (look up what creates histamine in food).

Despite that, I’m making exceptions for things which I want to make sure my body has experienced in the month before testing — nuts, bananas, stone fruit, fish, grains in addition to glutinous ones, even beans — although that’ll be a period of gastroparesis hell, but this system must not be “bean-naïve” for the test.

Because I really, *really*, REALLY want the data. This is the kind of info that could change the course of my life for the better. 

For that, I can get through some serious struggle. 

Ramping down steeper

I’m going to go down 12.5% of my dose every 2 days, instead of 3. This will shorten the ramp-time to 2 weeks. Recovery might be a little longer, but I can maintain attention on what I’m doing this for, for that length of time. 

Until then, I’ve got a lot of cooking to do and a freezer to stuff with things that 

  1. Won’t hurt me more than absolutely necessary, and
  2. Will include exactly what I think I need to be exposed to, to maximize the value of the test. 

If you’re in a similar situation, remember that your mileage may vary. Ask your own docs, and then ask their nurses the same questions.

The differences in the answers tend to reflect the wholism that nurses work with, a nitty-gritty pragmatism that rounds out the more optimistic notional-ness that doctors can succumb to. Both views matter.

For only the second time in my life, I might do actual menu planning. I’m usually more of a “what’s fresh? What’s cheap? What’s safe? What’s appealing? Throw it in the pan” kind of cook, but that takes brain. I’d like to insulate myself from a potentially very brain-free near future and reduce my frustration over the coming month. Having easy-to-grab, safely frozen meals sounds fabulous.

Here’s my plan…

The grocery order just arrived, so if you’ll excuse me…

Share this article:

The freedom of masking

Two years ago, if I were walking down a sidewalk next to trucks belching diesel, I had to breathe shallowly and mentally plan on the nausea and neuro-huckery that was likely to follow.

When I went shopping at Big Y — well, I couldn’t, because the massive bakery displays at both ends of the store could wipe me out in a heartbeat. 

I was sadly giving up my Goodwill/Salvation Army pillaging habits because the unquenchable stench they saturate the stuff with made me so sick it was harder and harder just to walk in there, and my de-stinking magic stopped working on fabrics. Sad sniffle… I used to get half my furniture from there, and most of my better clothes.… 

I considered getting surgical masks, but I already knew how many leery looks & disparaging comments that public mask-wearing used to provoke. I try to avoid getting leery looks, because people are a lot less likely to be pleasant or helpful towards someone they’re leaning away from.

Then The Modern Pandemic hit, and everything changed.

Nearly two heartbreaking and traumatic years later, the message that this is the new reality is starting to take hold; testing and explanations of what makes a mask effective is available from legitimate labs and reputable sources; and I’ve made myself 2 custom-fitted, Isy-safe, well-made masks that are easy to clean and dry well overnight. 

Colorful though they are, they just don’t stand out any more! Masks are part of the New Normal, and generally provoke smiles and friendliness instead of the opposite.

So, on today’s walk, I wound up surrounded by fuming traffic — and put my mask on. No problem. Then I went shopping at Big Y and went from end to end of the store — with my mask on. No problem. I was too tired to go to Goodwill today, but when I do go there, I put my mask on — and I don’t smell a thing until I get everything well outside and take my mask off. (I can still get the smell off of hard-surfaced things.)

Mind you, it’s not like my own breath is a bucket of roses (!) — but it still smells way, way better than diesel, and it doesn’t make me sick! 

It took awhile to realize it, but masks really set me free and make my *whole* world (not just the pandemic aspect) much, much safer and more comfortable to be in.

 

 

Share this article:

Wholeness is order

Many people have figured out before me that approaching life coherently, as a complex creature with inward & outward lives, as physical and energetic beings at once, and so on, is probably a really good idea.

I’ve spent years describing myself as a “text-based life form”, and “better in print than in person.” That was useful for a time; most of us need something to cling to, to carry us through, when we feel terribly broken.

This summer was transformative. I started it wholly committed to making my legacy; I’ve come out of it realizing that I’m very much alive, and that, if I’m going to get anything done, it has to be as a whole person — minding my relationships with those who can relate to me, minding my physical care as a loving duty rather than an intransigent puzzle, tending my crafts as sweetly as I need to be tending my recuperation, and so on.

Somehow, I’m absolutely certain that only in this way — and not in the head-first, head-down policy of my old working self — only in this way can I make meaningful progress.

Of course, that means it’ll take longer up front. But, as an old mariner, I’m well aware that prep is between 80 and 90% of the final result — so you take the time and do the prep, if you want good results.

I happily think of star nurseries (thank you, NASA , for this image), which look like glorious messes — but, from these, galaxies are born.

Logical? Well, not in any linear sense. Organically it works, though.

 

Share this article:
Seat-shaped rock in a shallow stream.

The Place to Be

On a rock in a river

Clean quiet murbles and shushes

everything Not Me drawn gently off

So easy.

 

Skeeters drift on, slackjawed with peace.

Dogs huff and slosh in the shallows,

Just going by,

In furry certainty

That happy playtime is normal

And right.

 

White white aspen tickles

Blue blue sky

And the birds zip

& comment benignly

up there.

 

The wet scent

Of contentment

Soaks to my marrow

And I’m finally

 

Still.

Seat-shaped rock in a shallow stream.

Share this article:

Enjoy

I’ve got notes for blog posts everywhere, but I’ve been too busy living life to document how. The important lessons I’ve mulled for years around self care, managing self and managing care team, relationships via electronics (not a new concept for connected spoonies, but now we have more & better tools!), balancing everything against rest rest rest, and soaking up the healing power of having a safe and accessible home… have all been revisited and integrated in many ways. (Boy, the effort that goes into developing a good care team really pays off!)

I’m also getting older. I’m unarguably at least middle aged (despite the opinion of my inner 17-yr-old), my local second-hand shop finally gives me a senior discount, and after 20 years of central pain and multi-system comorbidities & sequelae, the relentless work to get “better” (whatever that means) has become more tiring than it is rewarding.

But that’s okay! When one thing stops working for us, and repairs don’t help or aren’t available, then we sit & listen and wait for that inner voice or inner nudge that leads us in a new direction, right?

Sometimes going forward simply means going a different way.

While I still manage my care team and my patient role with courteous diligence, my overall focus has shifted from “how can we get Isy a bit better” to “how can Isy enjoy what’s left as much as possible with minimal harm.” (No harm is a bit silly as a goal. This is real life, not a nice fiction, so everything is a cost/benefit calculation.)

The focus is different, but the behaviors are very much alike. It’s just that this new perspective is so freeing! At this age and at this stage of apparently-inchoate decrepitude, enjoyment is a powerful motivator, and besides, the decades of diligence for its own sake have worn out a lot of spark plugs and gaskets in the engine of my soul. I’m happy to replace that engine with something a bit zippier.

Having the underlying personality that I do, part of enjoyment is working (obviously); at this time of life, I’m deeply interested in putting together some kind of lifework (also, obviously.) Putting out good work is extremely enjoyable, so, this mingling of motivations is right on target!

It’s good to feel a positive sense of direction. I wonder if it’ll take me where I expect it to?

Horse & woman laughing hysterically

Like as if!

Share this article:

When momentum uses inertia

Wizard, with hat and staff, standing next to text of Tolkien quote.That last post, about acknowledging the shimmering sense of mortality I’ve lived with for nearly a year? Well, I kept meaning to post an update, but I’ve been having too much fun making progress elsewhere, and simply dropped the ball. I often think, “oh, I should post that on my blog,” and then – pain diseases being what they are – when I shift context to hop online, I’ve forgotten what it was and quickly get sucked into something else.

At the risk of using terms improperly, I found myself explaining this normality of painee existence as a sort of “acquired ADD.” As it happens, our brains get changed in the same places and pathways that ADD brains live in, so that our scans look amazingly similar. Those ADD-like symptoms are definitely not imaginary. I have found myself using adaptations very much like those I’ve read about in some of the terrific books on ADD. I recommend reading up on it. There’s a ton of helpful material on how to manage with and work around these attention issues.

I miss blogging. So, I hope to automate (or at least simplify) moving information here from social media. There are still interesting questions to answer, and I think that useful info we generate in pain groups should find its way to a more stable, searchable medium.

I have been sinking into this life, having acknowledged that inward message about its likely brevity. I’ve been here a year, and love my little flat more and more each day. I’ve been rearranging, creating more usable space within the same square footage. It’s delightful!

I keep the picture that reminds me of those who made this happen over the decorative fireplace, where it looks wonderful, and send grateful thoughts to its source/s – even when reaching out in real life only creates confusion and misunderstanding. We humans generally, and painees particularly, sometimes realize we don’t control how others receive us, but we can steer our own thoughts. So, I maintain this practice of gratitude, because that’s who I am and always have been, and wait for better times.

More health problems? Certainly! I will write about the gastrointestinal circus another time. I’m currently working on digesting a drink of water, and I’d prefer not to think about it until that’s done. This is the big, hairy, stinking follow-up to the first sign of trouble nearly 2 decades ago, which I wrote about (with disgusting toilet humor, inevitably) over at the post Intestinal Fortitude.

Apart from one misunderstanding and that additional body system, this life is amazing. Bit by bit, I’ve been getting a broader pool of professional and personal help and support. Bit by bit, I’ve been coming up with adaptations that bring more art, craft, and productive time into my weeks, although I have to be careful (of course) about changing tasks and changing position and managing time better than I really want to. For instance: “No,” I had to myself yesterday evening; “you don’t get to finish that row of adaptive crochet! I don’t care how pretty this is, or how soft the yarn. These helpful tools only improve my function, they don’t correct the problem! Put. The yarn. Down. Thank you.  Now go do something else.”

So I did.

And then I treated my right forearm with everything in my toolkit. And then I made myself promise not to pick up those tools for at least two more days, because that’s what it takes to recover when I’m forgetful enough to do crochet on a couple of consecutive days. Change those tasks! Figuring out a crafty solution is not as important as protecting tomorrow’s ability. Or even tonight’s. I can use myself hard, but I’m not allowed to use myself up. I don’t count on a ton of recovery time.

I’m back to using dictation software, in order to make better use of my arm time. The stylistic difference is clear to me, but it probably doesn’t matter. This is a good compromise to make, although it’s not necessarily an easy one. Dictation is a strange, slow way of speaking, and it forces me to think in chunks rather than in thoughts and words. But hey, it works!

Times are changing. Whether or not the current American president behaves any better, whether or not the next American president has the moral courage for fundamental changes, whatever, times are changing. My own possibilities are opening up, and I’m not holding back. I didn’t even know I was, but boy, things have changed since I stopped trying to eke everything out! I’ve got things to do, and I’m not waiting any longer to do them.

If I were more self-conscious, I’d throw in a bumper sticker-appropriate remark here. I’m out of ideas. I’ve got other things to do now. Maybe next time. Maybe. 🙂

Take care of yourselves. When you can’t, take care of each other. When you can’t do that, take care of your world. It helps.

Share this article:

Active presence

I love the term “radical presence” because it feels radical to jump the barrier of overwhelming emotion to land face-to-face with the moment and be able to look straight at it regardless. However, in practical terms it’s the opposite of radical — it’s conservative in the classic sense, because it puts us back into the realm of what’s demonstrably real and solid.

Therefore, conservative presence is the same as radical presence.

What a wonderful object lesson in putting political branding aside.

However, for the sake of clarity, I think I’ll start calling it “active presence”, as it usually takes an act of will.

When I was working as a nurse, an important part of the job was teaching people what they needed to know in order to go on better: dress the wounds, improve activity, improve nutrition, manage impaired systems (immunity, pain, respiratory), take care of relevant organs (heart, liver, pancreas, kidneys, gut, brain) and so on.

I’m sorry to say I was too idealistic at first and found myself being scoldy. The word “should” showed up a lot; worse still, “shouldn’t.” Argh! Words I’d love to take back!

I finally learned the key principle of teaching & training around life skills, especially primal ones like eating/drinking/moving: people have to start from where they are, not from where anyone, including them, thinks they should (ugh) be. The ideal is not relevant, only the real.

The first step, therefore, is to find out what that reality is, no matter how egregious. Their best hope of improvement is almost always in small, manageable steps, starting right from their current reality.

This led me to my first understanding of active presence: change has to start from this eating habit, this activity level, this degree of self management. No others exist yet! Trying to pretend they do only builds castles in the air.

However, I’ve seen patients of mine go, for example, from couch potatoes with snack-stocked shops and triple-bypass heart attacks to organic-grocery-owning half-marathon runners in a couple of years, by starting with tiny stepwise improvements: cardiac rehab class, to slow walks, and on up from there.

woman walking up beach, looking totally at home in her skin.

There are no guarantees (it’s easy to joke about people with great life habits getting hit by a bus) but hydration, nutrition, fresh air, and exercise tend to pay off tremendously– usually after a clunky adjustment period, as body and mind lurch through the initial changes.

Of course, the time that new habits take is going to pass anyway. Would you rather be reaping rewards at the end of it, or find yourself back in the rut that put you into medical care?

I’ve said exactly that to many people, with honest attention. This isn’t a trick question, nor is it an occasion for smarm. It’s a key question we all have to ask ourselves periodically throughout our lives, in one way or another. Everyone has the right to contemplate and answer that question honestly, even if the real reaponse is, “I like my habits/my rut, I see the trajectory, I know where it will take me, and I accept that probable outcome with open eyes.” I’ve had people say that, in tones varying from sweet concern for my feelings to roaring defiance. It’s all okay; it’s their call. I’d ask if they’re interested in cushioning their fall or minimizing damage to others, tailor suggestions accordingly, and then call their physician to adjust expectations and ask about/offer any ideas for mitigation over improvement. (It was never a total surprise to their doctors.)

As a patient, I have made — and continue making — complex changes in order to stay as well and functional as possible. I’m persistent like that. To me, being incapacitated is intolerable. I’d rather have better options.

“When you’re alive, anything is possible. It’s being dead that seriously limits your options.”
– Jodi Taylor

Active presence puts me on ground firm enough to step off from, and actually get somewhere. I’ve been living with a strong inward nudge to simplify, focus, and hurry up, because I don’t have much time left. It may be fallacious (I hope so), my subconscious working to override my “completion anxiety” about larger works. Given the accuracy rate of these deep, strong inward messages up to now, I’d be a complete idiot to ignore it. So, I’m simplifying, focusing, putting my ego (which is where this anxiety resides) off to one side, and buckling down on building the structure of my legacy in my head. I’ll discuss that more when there’s some output.

Dying is horrible. I don’t want to do that, ever. I’ve started to, a couple of times, and I’ve seen far too many loved ones go, especially those with these diseases. No words, no words for it… That said: Being out of this relentless, grinding circus of delicately-balanced tolerability, with horrific and likely further life-limiting consequences for certain mistakes? Really looking forward to being done with it! There will come a time — at some point, for me as for anyone — which will suck, and shortly after that, I’m absolutely certain there’ll be an end to this (extremely well-managed) biological terror and the unimaginably cruel pain that drives it.

I have this stubborn inner nudge that it’s not far off for me personally. That’s definitely NOT my choice, it’s the circumstance I find myself in. Without having wanted or chosen it, I somehow find acknowledging it to be hugely freeing!

That is intensely weird, I know. Also uncomfortable and maybe bitter and sad.

But that’s what is true for me, right here and right now.

From here, and only from this point in my often tortuous reality, can I move on.

I accept that.

Here I am.

Time for the next little step. Who knows where it’ll take me in the long run?

Let’s find out.

Share this article:

Focus

There’s a lot going on.

My own health took a hard dive late last year and the damage continues to evolve…

…On top of an increasingly human-hostile political system and increasingly deadly climate.

Fun times.

So, yeah, sitting here on a big pile of crap. But that’s not the problem.

What really bugs me is this relentless, quiet, basso-profundo voice murmuring in the back of my brain, “Hurry up. You don’t have much time. You, personally, don’t have time to waste. Pick your focus. Nothing else matters. Get to work. You don’t have much time.”

I used to have a lot of projects running at once…

  • I didn’t tell anyone, but I secretly hoped I’d be able to run again. I used to run 4 miles up & down a canyon in the redwoods before work most days. It was glorious. Before that, on the other coast, I ran 5 to 10 miles along the banks of the river in Alexandria, Virginia, because it felt good and kept my head clear for work on the HIV ward. I ran from one place to another because it was faster than walking.
    Yeah. Well. Between dysautonomia screwing up my circulatory responses and adrenal glands, the tissue fragility of mast cell dysfunction vs. undiagnosed EDS offering to rip holes in my tissues again, and the recurring exercise intolerance, I can let that one go. I enjoyed it at the time, look back on it fondly, and intend to be grateful for that much.
  • I was going to start a business with a line of absolutely stellar pain creams I came up with. Seriously good stuff! It’s at least as good as the medical marijuana salve I used to make from top-shelf medical-grade bud — but totally legal everywhere! I was looking forward to getting that out to my fellow painees, doing some good and making some money. (Comment if you’re interested. I could be persuaded to sell my stock-on-hand.)
    Instead, I’m willing my recipes and equipment to a friend who knows people. She can get it out, and make more when that’s gone. Meanwhile, I’ve got a few hundred bucks locked up in the only exception to my “2 piles” rule for money: 1 pile (my paycheck) for monthly expenses, and 1 pile (an insurance account from the Worker’s Comp branch of the higgledy-piggledy US system) for treatment and survival. That 3rd pile, which belongs to the business and only to the business, is gathering dust. It might help her get started.
  • As regular readers know, I once hoped to make my own safe home to age, work, rest, and die in.
    The downside to owning a home is clearer than ever, and to a limited budget and limited body, it’s a disaster waiting to happen. That dream is dead, staked, burned, and the ashes are buried at the crossroads.
  • I love fixing sh-tuff. The dopamine wave is delicious. However… too many piles of sh-tuff waiting to be fixed, plus associated tools and supplies.
    I’ve donated, bartered, and tossed away more than I even knew I had to spare. So far, I don’t really miss it.

Months ago, I gave up all my arts & crafts except writing and drawing. (And making masks.) I came up with some chirpy sounding reason, but it was about clearing my agenda and narrowing my focus.

There’s something intense about that voice. I look back and realize I’ve been responding to it since before this GI crisis evolved. Thinning out my pursuits. Thinning out my belongings. Thinning out my life.

Narrowing my focus long before I could hear the words this clearly.

For awhile, I thought it was a symptom of wonky chemistry, as I’ve had to do that medication square-dance that people who need neurotransmitter stabilizers have to do now and then. Chemistry is pretty good in here now, and that voice is clearer than ever.

So, here’s what there is to work with:
* I’ve done a lot of writing and training.
* The biological-sciences part of my brain has kept its doors jammed open, despite all the other closures.
* I’m an honest enough historian to know how too many people have been shut out of the process of using their health care systems, due to gender, race, class, and lousy sociohistorical times.
* Me and my friends have developed some powerful tools for being seen and being believed.
* Also, we’re pretty delightful cartoonists. (Hey, it’s a great teaching tool!)

It might be time for all of this to come together. My mission, should I choose to accept it, is to “drive” turning all this into a body of work that can continue teaching, training, and translating between chronically & profoundly ill patients and the rest of the world, long after I’m gone.

I have only 2 jobs now: stay as well as possible for as long as possible, and craft that legacy.

It’s frightening to contemplate pushing everything else off my plate, but the experience of the past year has shown me, over and over, the peace and release that happens after.

I don’t have to find the perfect home, although I’d sure be grateful if it landed on me and sucked me right in. (I can’t pack myself up to move one more time.) I have to make this one work better, and get on with the rest of my life. I honestly don’t think I’ve got a lot of time.

But then, I’m not sure that’s the point. Maybe I just can’t focus on more than 2 jobs anymore.

Share this article: