Category: what works

Refocus on what works: In memoriam

Isy / / critical thinking, legislation, loved ones, meds/drugs, perspective, politics, science, what works

Debbie died yesterday. She was a never-failing source of encouragement and intelligent support on one of my key online CRPS support groups.

She died on the table, while undergoing a medical procedure. I don’t know exactly what it was, and given my respect for patient confidentiality, it’s none of my business.

She’s the first person to die of my disease, to whom I felt personally attached. Needless to say, it’s sobering as hell.

I’ve written about the need to attribute deaths from this disease correctly. I’m preparing my own final papers. These thoughts are nothing new.

But today, they are biting deep.

I’ve recently become highly politicized over rights abuses and intolerable corporate stature in my country. I have privately — and quietly — become convinced that the US healthcare system is so completely predatory, so opposed to its own mandate, that it will never offer healing for anyone in my position.

Debbie’s death has broken through my professional anxiety about appearing detached and scientifically sound. I have, at long last, become politicized about the most important subject in my life, after 25 years of personal and professional involvement up to my back teeth.

I have minimized my discussion here of what actually works. That dishonest omission has done us all a great disservice. I’m going to discuss what works, whether or not it’s FDA approved, pharmaceutically profitable, or adequately studied.

Medical studies are a shining example of the fact that we inspect what we expect, not necessarily what we need. The fact that studies have not been done on most modalities, or not rigorously done in double-blind experiments, doesn’t mean the modalities don’t work.

It means the studies need to be done. Period.

Where I understand the mechanisms of action, I will explain them. Where studies don’t exist, I’ll detail what should probably be explored.

But I have had enough of silence. I will not die as Debbie did. I will not die on the table. I certainly will not die saturated with soul-destroying pharmaceutical-grade poisons, as so many of us do.

I will find a better way. I will find a way that works. I’ll do my best to persuade others to study the modalities involved, and to fund the studies. My legislators will learn to recognize my name on sight, because their slavish debt to the pharmaceutical industry is absolutely intolerable and it’s up to me, and others like me, to convince them of that.

I wish Debbie a painless and peaceful rest. I hope her extraordinary husband finds enough strength and comfort to manage life without her.

For myself, I want the intelligence, resources and strength to find a solid cure, make it happen, and spread the word.

No more silence. It’s too much like consent or, worse, collusion.

I do not consent to the deaths of my friends.

With my eyes now open, I’ll no longer collude.

Let’s find a real way out.

L.O.B.E.: Lung-Opening Buoyancy Exercise

Isy / / nature, self-care, what works

I floated in the hot springs, like a wallowing marshmallow: inhale to come up, exhale to go down and sink beneath the surface. Lift chin, inhaling through fish lips to lift myself up, wobbling; exhale, slowly descend… to one side.

It had been a few years since I had done this, but something wasn’t right. I was rocking like a drunk.

Inhale, slopping over to the left; inhale further, watch my middle rise, then my belly. Exhale, and sink piecemeal, in chunks.

This was just weird.

I got up, reached for the brains I had left by the side of the pool, and dumped them back into my head.

Now lie back… breathe… whoa, definitely off-balance. Flopping over onto my left side, I grabbed the side of the pool as realization struck.

I was only using my lungs one lobe at a time.

Yeah, weird. I didn’t know it was possible.

Some of you know that the right bronchus is supposed to be more accessible, but it was the left lower lobe that inflated first. The right side inflated second, middle then bottom. Before the left upper lobe. My right upper lobe had simply forgotten how to expand, and took some prodding.

Inhale, slop, wobble; exhale, stagger, bump. The water let me know exactly how well — or not — I was doing.

It was a busy morning, relearning how to use my lungs, rocking like a sea serpent surfing for prey. I spent as little time as possible reflecting on how a once-athletic health nut who liked to meditate, could forget how to breathe.

In a hectic and pun-lathered conversation this afternoon, we decided that “lobing” was a good word to describe working on those skills you really should’ve mastered long ago, preferably with a built-in indicator that not even the terminally clueless could miss.

I’ll spare you the wordplay, except that I’m a little worried about the Loberlords.

Next, I’ll try to go for a walk… but that’s far more complicated.

Maybe I’ll just sit here and breathe.

Fair Share Challenge: what taxes do for me

Isy / / critical thinking, loved ones, opinion, perspective, realpolitik, what works
This budget horror-show has given us a lot to think about. The role of taxes in our country is probably the biggest, sorest issue of them all right now.
“Why should we pay taxes? That money is ours – we earned it!”I heard this from a member of the armed services who’s quite intelligent.   
Out of respect and consideration for my impassioned, but perhaps distracted, old friend, I wanted to find a non-partisan, preferably non-political way to discuss the point of taxation. So let’s simply see how that money gets used in real life.
Everything in bold-face type is heavily subsidized or completely funded by government money – local or federal, for better or worse. Do any of these tax-funded things affect you?
I take pain medicine which was funded by government grants to develop. My treatment was developed by government grantees. It keeps me alive and functional, so I can write things like this. Is that a good use of taxpayer dollars (printed at the Mint and monitored at the Federal Reserve)?
Read on and let’s all decide.
My nephews go to school by bus, when their mother can’t take them. She has just received her teaching credentials, so she will soon be working as a teacher. Their father, my brother, is a Marine. He runs a base where he supervises the training of National Reservists of the Army, Marines, and Air Force.  He recently visited a friend in the VA hospital.  All of his children were born in military hospitals.
Since they all run on a tight schedule, they use their car a lot. It uses gasoline; they used to have one that ran on diesel; the next one may be an electric hybrid. To cover short distances, they use local roads. To cover long distances, they use highways. They’re careful of road crews, and drive sensibly over bridges and through tunnels (I hope.) Me, I mostly use the bus and train.
My brother and his wife pull over to make room for fire trucks, police cars and ambulances. (Many ambulance systems have been privatized; however, they still work on the basis of city or county contracts that are funded by taxes.)
They eat on the healthy side of a normal American diet. With three growing boys in the house, they eat plenty of wheat and corn-based products, such as bread for sandwiches, cereal, pasta, and so on. They’re allowed occasional treats, including candy and soda sweetened with corn or cane sugar.  I bet they get their beef from the grocery store, so you know it was raised on soy and corn, and was probably fed antibiotics.  Those boys are pure dynamite anyway.
My dear old friend David used to work at the library. He still volunteers there. His pension keeps him in a simple but comfortable style of life. He likes to attend church, though most of his real friends are out and about on the city sidewalks.  He keeps in touch with a friend who has been in the mental hospital, and their conversations help her stay on track.
When my Dad died suddenly, I attended support groups at the local Hospice.  I used to be a nurse, working in hospitals and home care.  In the ER we took care of prison inmates when they got hurt. 
I ran out of work at one point and wound up on food stamps and welfare.  I will never forget that they kept me alive until I could find work again.  Since then, I haven’t really minded paying my fair share of taxes.  
During the last election cycle, I saw an angry woman on TV waving a sign that read, “Get your government hands off my Medicare!”  I hope she understands things better now. 
This has given me a lot to think about.  
And, fellow bloggers, here’s an invitation/challenge: how much better can you write on this theme?  How much do you really know about government support for the things you use every single day that make your life do-able?  How does this pertain to your work, paycheck, interests, family – whatever really matters?
I’d love it if you’d share links here and let me know.

Beyond courage & compassion

Isy / / CRPS knock-on effects, perspective, self-care, what works

Here is a link to an article I once would have found moving and relevant to my nursing practice:

Courage and Compassion

The central idea is that the writer is dealing with an Ivy Leaguer with early dementia, who does the usual things of declaring that it’s “not that bad” even as her mind shatters piecemeal. The writer is trying to figure out how to be a good therapist while trying not to panic at the thought that it could happen to her. She looks for her answer in Buddhism, which is not a bad start.

I wrote a response which seemed too long to go through the web page’s comment function. I thought it over, and decided to post these ideas here, since this is the quintessence of learning how to live with the unbearable.

For several reasons — including being wildly overmedicated on antidepressants — I’ve gone back and forth across this line of intellectual capacity and incoherence. Since my central nervous system is still compromised, I will inevitably go back across that line again, if I live long enough. (Sadly, science focuses on the pain of my condition rather than the impaired function. As far as I can tell, the scientific subculture in psychiatric medicine has absolutely no regard for intellectual capacity in its patients, considering intelligence disposable — when it’s mentioned at all.)

There is another reason why this writer’s patients tell themselves it’s not that bad. Like most of those with an acquired disability, they find that there is more to life than they imagined, and that functioning with an impairment in an aspect of life they once considered essential, has opened up their minds — and their hearts — to aspects of life they never realized they valued so much.

This newly-demented woman is still loved. Her survival is still assured — to the extent one can say that in this world. Even though she lived all those years depending so heavily on her intellectual capacity, there comes a time, when everything is swept away and every characteristic you thought defined your “self” is gone, when you realize that something is still standing there, asking the question, “Who — or what — am I?”

Our ideas of who we are, are, I suspect, an essential part of samsara, or the world of illusion. I know that, whatever happens to me, the answer to the question of identity is both eternally answered and perfectly unanswerable.

In the end, it may be that we find we don’t need those illusions. If I didn’t have to struggle to survive, if I had a spouse and children and insurance, functioning without my intellect would have been immeasurably easier. When I lose it again, I have no idea what I’m going to do. However, I have a pretty good idea which of my friends will be able to stay with me on that journey. The past few years have been enlightening in that respect.

Suffering is, by definition, a willful engagement in the anguish of life. I find that it soon loses its charm. Is it more useful to struggle with the engagement of my ego, or to turn my attention to what works — the love in my life, the warmth of the sun, the value of the moment, the puzzle of doing the very next task?

In front of a boat propped up on blacktop, a man holds a bubble wand with bubbles streaming away, lit up by sunlight.

Losing my mind was a stunning lesson in the fact that it’s not about my limited and ego-driven ideas of myself. It was a door to perceiving what really fills my world, what lies beyond my expectations and beyond my uniquely limited understanding. Through her work with these people, this writer may have the privilege of discovering that, without having to pay the savage price that most of us have to pay for that understanding.

She writes with desperate fear of facing this herself, but this opportunity could be the gift that insulates her from the very devastation she fears, even if it does happen.

We humans are driven to comfort as the sparks fly upward, but there are times when it makes sense to turn your back on present comfort to ensure your future safety. Her fear won’t ease until it’s dealt with, as this issue is part of her work.

As for me, it’s time to go meditate. I intend to weather my future well, regardless of how little intelligence I can bring to bear at any given moment.

A bad day

Isy / / CRPS knock-on effects, self-care, what works

I thought being able to live would ease my system. Unfortunately, my hands and feet are freaking out and going suddenly, rapidly downhill on pretty much the same trajectory as a week ago. I’m having the natural feelings that all artists, crafters, musicians and handyfolk have as they contemplate a plate of wieners at the end of each hand and wonder if this is finally it.

Reaction setting in? Perhaps. It occurred to me that even a surge of _positive_ emotion is still a huge shock to a fragile system. What I know for sure is that today has been the worst pain day I can recall. Off the charts.


Lacking a boyfriend, I’m contemplating my next pet: something with rough fur, since cuddling with texture helps my arms’ skin normalize sensation a bit. That could help.

The ground beneath my feet

Isy / / insur-dance, self-care, what works

I said quietly to my lawyer about an hour ago, “I’m not used to being massively relieved or explosively happy. So I’m just going to sit here and think about it for a minute.”

The settlement of my worker’s comp case turned out in a way everyone looks very pleased with.

First, I got something to eat (oxygen first, blood sugar second, everything else third, during big emotional surges — elementary mental hygiene!)

For the past half hour or so, I’ve been just strolling around, practicing feeling not worried about survival. Amazing how it all comes back.

This time, though, I’m well aware of embracing my inner Scot — I’ll tend my money carefully, because I understand its value and power as I never have before.

The crystalline nugget that emerged, as the shock and fog cleared away, was this:

I’ve always been rich. Now, I can afford to survive.

The happy thought that followed was: I can finally afford to have a pet. Maybe a ferret … I could use more work on my reasoning skills anyway.

"Nothing you do is in vain"

Isy / / loved ones, perspective, self-care, what works

My older brother’s sister-in-law has been doing international relief work for almost as long as I’ve known her. She was so helpful and wise, at the time that I was considering it myself, that I didn’t go into the field, though the thought of being so useful to those in such need was overwhelmingly seductive.

I know I don’t have the mental scale that lets you balance what you can’t accomplish with what you can, and decide whether the tradeoff is acceptable. The conditions are so harsh and the scale of work so grim that it imposes limits on care that are unimaginable to those of us who take soap and clean towels for granted; let’s not even think about bandages or IVs. I’d have come off very badly indeed, and that means I couldn’t have done much good.

In our intercontinental conversation on the subject (she’s British), she pulled off a balancing act I have strived to acheive ever since: clearly convinced of my capacities, without any assumption that she knew what they were. When you think about it, that’s very sensible — everybody’s good at something, often several somethings, and there’s nothing that says they have to wear their talents on their sleeves.

I was desperately intrigued by international aid work, but not sure I should pursue it and not even sure how to start; I wanted to know what to do to improve my chances.

She told me, “It doesn’t really matter what you do.” Shifting up from her lovely gentle, understated, soft British manners, I was riveted to my chair as her voice became more resonant, more intense, and I could hear the words marching from the depths of her soul, as she said something like this: “Do what you do; follow your instincts; do the work that comes to you. If [disaster relief] is the right work, the opportunities will open for you when you put yourself in their way, and whatever you’ve done until then will help you get there. If something else is right for you, then whatever you’ve done will help you get there instead.” And then, with a certainty that still makes my bones ring, “Nothing you do is wasted effort. Nothing you do is in vain.”

That was a third of my lifetime ago. Even now, when I have to pull myself through these non-international, unaided situations that are unimaginably grim in a totally different way, I remember her words and how she said them: “Nothing you do is in vain.”

Knowing that no effort is wasted effort, everything becomes much less difficult. Even in such a tiny life as mine has become, this matters hugely. In fact, it totally changes the game.

She was awarded an MBE in this year’s Queen’s Birthday Honors list. Clearly someone agrees that her own work is far from in vain.

How moving

Isy / / moving/traveling, perspective, self-care, what works

I’m working on clearing out all the needless stuff from my boat. This includes unfinished projects, equipment for work I can no longer do, things I’ve kept only because they’re too cute to get rid of, and so on. It’s been sufficiently, um, absorbing that I have neglected the blogs, but I’m playing catch-up online as I take an hour or two this morning to step back and breathe.

One realization that has helped me tremendously is the insight that NOTHING IS WASTED. I realized this when I held up a shirt that I had worn for a sweaty project: it was too smelly to use as a rag, but I couldn’t bring myself to wash it (laundry costs), and I realized it ought to go in the bin.

In a century or three, it will make very nice dirt for something to grow in. And isn’t it possible, I found myself thinking, that holding relentlessly to individual human scales of usefulness and time is a little … well, ethnocentric isn’t even the word. Speciecentric? … We are, after all, part of a greater reality which none of us will see the end of.

This expands on an idea I had long ago: that I don’t have to hold everything inside my skin. I was meditating to escape pain one day, and it followed me in, the jerk. So I took the idea that I’m just one drop in the ocean of humanity, and as my sense of awareness grew and expanded, the pain did not — it dissipated, being spread so wide over the whole world, and went away.

It was waiting for me when I got back, of course, but for one thing there was less of it; for another, the break did me a lot of good.

So I’m working on expanding my awareness. It makes it easier to detach from Things — objects whose main purpose is to take up space, use up mental energy, and carry some emotional trigger that, in fact, I probably don’t need. Life is quite emotional enough without the needless triggers, thanks.

Radiant

Isy / / radiation, self-care, what works

We got the first rain since the reactors melted down in Japan. Weather systems being what they are — global, persistent, and efficient vectors — I took that rather seriously: scrubbed the deck to reduce absorption capacity, reconstructed the cockpit cover to keep the rain off, shoved fuel and spare cushions into the hard storage area, cleaned up belowdecks so I could stand being indoors for a couple days. Also stocked up on miso and tasty seaweed treats, to protect my thyroid — damn, they’re good.

In the absence of a Geiger counter… One of the really fun things about radiation is that — like fiberglass dust — we have no good way of assessing our exposure until it’s much too late to change it. As a nurse and as a DIY boat-owner, I figure it’s reasonable to protect myself as best I can, then hope for the best.

Tech note on seaweed/thyroid remark: the natural iodine in seaweed and miso loads up your thyroid gland’s iodine receptors. This leaves no room for radioactive iodine — carried in rainwater, for instance — to glom onto you. It’s exactly the same mechanism as the benign iodine in radiation pills. The dosage is more precise with the pills, but the taste of the seaweed treats is rather better.

Radiation and sudomotor silliness

Isy / / CRPS knock-on effects, radiation, what works

My hands and feet have been getting very swollen. My hands puff up on the phone or computer especially; with a bit of training, I bet I could learn to feel just how many rads are coming off of which hotspot, just by the icky feeling and instant puffiness. (Puffiness is driven by a neuro-vaso-muscular response called the “sudomotor response.” Also drives sweating.)

I left the computer off & unplugged for 24 hours. Left the phone at home while I was out today. Hands: hardly puffy at all, until now — they’re inflating as I touchscreen this entry. Mood: ooooh, grouchygrouchygrouchy. And such a headache…!

Think I’d better back off on the radiation. I do not need that kind of physical or mental alteration. I do need the tech, but I can manage it better.

I knew my hands inflated near my devices, but the confirmation that they don’t inflate normally was a relief.