Living constructively, adapting, and outwitting the odds
Author: Isy
////Today, I went up to Heath Fair, the kind of country fair that has pulling contests for everything from bullocks to tractors, first through third prizes for identical piles of potatoes, rare critters no factory farm would make room for (like this 4-horned goat),
… and also henna tattoos, a massage booth, Chinese food options, and extraordinary handicrafts with century-old handtools being used by gnarly-handed, smiling neighbors.
I started the day with a good solid Brain-Food shake, but once we hit the Fair, that was it.
French fries made from fresh local potatoes, fudge made from fresh local milk, coffee with maple syrup from fresh local farmers.
Then we got home and had ice cream and cheese.
I haven’t touched a single bit of produce (that didn’t have a ribbon on it) since breakfast.
I’m doing okay. Daffy, but okay. A little sore through the elbows, but okay. Not able to soak up any science, but okay. Very glad I didn’t have to drive home, but that’s okay, too.
We stopped on the way home to catch the closing of the Pow-Wow on the Mohawk Trail, a lovely arty cozy time with friends and their friends. And that was more than okay.
Whipped cream on top: learning that moose have moved down to this area…
As long as I do this wild irrational feasting on weird stuff about once or twice a year (no more), I should be … okay.
For one thing, it’s good to keep your body guessing. (That’s why dieters need to have one good belly-filling meal every 2-3 days, so the body doesn’t go into famine mode.)
For another, I suspect it does me good to remind myself why I don’t eat this stuff normally. Even though my body is handling it like a champion, that’s because my usual diligence has created a certain amount of metabolic slack; I can absorb a bit of crap without disaster.
Still no wheat, though. I’m adventurous, but not self-destructive. My lovely hostess, Laurie, indulged me by getting some of the homemade wild blueberry pie and assuring me it was every bit as good as it should be.
While tomorrow brings another day of quantities of greens that could make even Dr. Terry Wahls raise an eyebrow, I’m kind of digging the memory of one day with so much creamy, mouth-melting sweetness. I’m smart enough (finally) to know what’ll happen if I keep it up any longer, but I’m old enough to really, truly enjoy my memories just as they are — without regret, without longing, just with simple pleasure. This is a nice one.
Mmmm…
And tomorrow’s shake will be just as good as ever. Possibly even better.
//No matter how fascinating a line of inquiry is… no matter how badly I want to make that conference call… no matter how scintillatingly brilliant that blog post that’s unrolling in my head will be…
Something else has to come first.
If I haven’t had my brain-food shake, or it’s time for a massage, or the phone is ringing and it’s someone I haven’t connected with in awhile, then shake or massage or phone comes first, in that order.
And then, CRPS doing what it does to attention and memory, whatever I had on my mind beforehand is gone. Taking notes, unfortunately, doesn’t work — I’ve tried it. Notes work for those whose brains maintain networks of ideas, who can trigger a cascade of memories from the brief mnemonics. I’m working to get it back… which brings us back to the first priority.
And, I’ve found over the years, the second priority is inextricably linked to the first — directly and indirectly. But I think that’s a whole ‘nother post, all by itself.
I’ve been a Type A worker for about 24 years. Relaxing does not come naturally, but I’ve learned to manage it in reasonable doses. Losing work is bad enough, but losing it before I’ve even had a crack at doing it is, well, what those with pithier vocabularies call a mindf!ck.
Knowing that I’ll probably lose the work, and making the choice to go ahead anyway, takes more discipline than I always have. But — despite the learning difficulties — I’m getting better. Even I can learn to keep my priorities in order.
//The most manageable way for me to get them in is via my handy little one-person blender. It keeps them raw (maximum nutritional value) and prechews the kale, which can really be troublesome after the 3,000th bite.
Here’s my basic recipe. Options and rationales are below.
– handful of berries (I prefer blueberries and cane berries), or 1/3-1/2 a half-pint container.
– about 1/2 cup water (helps soften berries)
– 3-4 medium to large stalks of the fluffy kind of kale, called “lacinato kale.” 7 or 8 stalks of the smooth variety. Chop in strips ~1″ wide, depending on blender strength.
– about 1/2-3/4 cup apple juice or cider.
– 1/8-1/4 teaspoon cinnamon.
– Options:
= Dessertspoon of nut butter or a slosh of yogurt, for protein and a bit of oil/fat to help me absorb all the nutrients.
= Pinch of stevia powder: adds sweetness, further aids with blood sugar stabilization.
Kale: given the quantities I eat this in, it has to be organic or I’m in strife.
Berries: I use either fresh or frozen, whatever is available and affordable. Always organic or close to it, because industrial growers use lots of pesticides on most berries and they’re hormone-based (estrogenic) – I used to live near strawberry country and the spraying was really obnoxious. I tried using berries grown by industrial methods, to save money, but it put me on a horrible hormonal roller-coaster… 2 solid weeks of PMS? Not so good.
Cider/apple juice: provides malic acid, which helps clear garbage out of the cells. Also helps cut the bitterness and predigests the burpy stuff out of the kale. Use a splash of raw cider vinegar if you have to use another juice.
Cinnamon: It cuts the bitterness the rest of the way, and helps stabilize blood sugar. There’s a lot of sugar in this, for me. You wind up not tasting it, but the shake goes down better.
Options: I often add the nut butter. The resulting texture is creamier. The yogurt, even a little bit, makes the shake more filling, so it’s good for making it feel like a meal.
I recommend adding a bit of oil/fat, because it’s so important to squeeze all the nutrition I can out of each bite (especially when nausea makes eating unpleasant) and oil or fat helps with the absorption of key nutrients in this shake.
I also find that pain is less and thinking is better if I get adequate fat in my diet, meaning, a moderate amount more than I need to absorb this nutrition; one day I’ll remember why. It rings a bell from my nursing school classes. Might relate to the demyelination issue in chronic CRPS.
If I don’t add a bit of something oily to the shake, I have a slice of aged cheese or meat, which provides brain-friendly fat and also gives my body neurotransmitter precursors — adding more oomph to the brain-value of what I’m eating.
It’s an uphill slog but I’m determined to get better again. These shakes really help. Trouble is, there’s only so much room in an individual tummy, and I do need to stay under a bearable weight and eat other things to stay in balance.
Sigh… It’ll work out. It’s hard to be patient enough, but healing in the face of profound illness does take time. If there’s one thing I’m learning, it’s patience.
Time for another shake…
//The output of these interviews is going to go under an umbrella project, a 501(c)(3) we’re putting together, called “CRPS: Art & Spirit” – but that’s another blog.
I’ve been car-less for a long time, which is tough in this country. After the usual research and footwork, I wound up buying a Toyota Highlander, 2005, less than 80,000 miles on the odometer, a tad over budget. It looked good (and, with deep red coloring, is the perfect visual for this disease), it felt fantastic… But I noticed the engine hadn’t been fully serviced. It’s been in the shop for two days now. It’s supposed to be ready.
What started in a sweet blaze of optimism is going sour as the time comes closer to put my signature on paper. (We closed the deal after hours.) I had to call for an update to find out the car was ready; now it turns out my insurance company is one they don’t like the flavor of; and it turns out, with additional tone of voice, that I’m supposed to make an appointment to do the paperwork.
Excuse me? At a car dealership, I need to make an appointment for paperwork?
This does not bode well. I suspect distraction. I’ve already asked for a copy of the documentation on the work that was done.
… So here’s the thing.
I’m a nice, middle-aged, former RN… with a devastating, incurable and painful disease… with (I’m happy to say) a growing readership… using this vehicle as a tool to work for the greater good.
And documenting the entire process.
Is this a person anybody would really want to deal badly with?
I’m pretty sure the answer is no. But we shall see how this goes. I’ll keep you posted.
//Selling my home of 6 years, moving twice in one month to different regions under difficult circumstances, starting a relationship (which quickly became long-distance), having a setback with CRPS, and getting a windfall, is a heck of a lot of change in less than two months.
Some of them are good changes (for a change, ha ha) and am I ever grateful for that! But they cause significant shifts in the mind, which causes significant shifts in the body. …With chronic CRPS, there’s simply no practical difference between physical shifts and mental or emotional shifts any more. The domino effect is complete.
I had malabsorption syndrome for a few weeks there, where all my food went whizzing through me and I couldn’t get much nutrition out of it. It has settled down, but I still have considerable endocrine weirdness and I’m gaining too much weight (more than my intake should cause.) This means my feet and knees are under still-heavier attack from CRPS and fibromyalgia.
I find this disturbing enough to be frightening — if my feet get wiped out, there goes my one good form of exercise — until I got reminded of one of those things I used to know, back when philosophy was easy, before this past decade’s descent into Hell: “Fear and sorrow inhibit action… anger generates it. When you learn to make proper use of your anger, you can transmute fear and sorrow to anger, and anger, to action.”
That’s from Millman’s Way of the Peaceful Warrior, a book I couldn’t read for years because allegory’s contrived tone always put me off. One of the great advantages to getting my butt so severely kicked for so long is that I finally shed a lot of intellectual arrogance; I can now stomach the clumsiness of allegory, if there’s something worth gleaning from it.
That tip alone might be worth the effort. I’ve got plenty of anger, and rightly so. Rather than always managing it out of sight, I can dump my fear in there, where I can use it.
Chosen change is mine. Make way.
//This could go on for quite some time, especially since my figuring out how to fix it is going to involve a better-functioning brain than I’ve been able to bring to bear. Or else a flash of insight. Or a tremendous stroke of luck. Possibly a gift from the great good gods. I’m open to all of that!
The old idea was that it was silly to post unless I could post something I’d be happy to reread, and I can tell when I’m not happy to reread something if it gets changed or deleted. I’ve been changing and deleting more, indicating a certain amount of wasted effort.
I’m beginning to think it’s silly not to post. This is life with CRPS, after all. It goes on, whether I’m ready for it or not, and frankly, it does involve a certain amount of apparently wasted effort.
//It’s not here yet, and I have to manage with what I have. I’m grateful for my monthly disability income. It would be nice to have more, but it’s enough for me to live on. Just enough. My income is more than many have, and I have really simple tastes… but most people can live a whole lot cheaper than I can, because my “basics” are different.
I want to ask my blithe friends to point to something in their cupboards — something to eat. Anything.
I have to put expensive berries and piles of organic greens in my cart.
I spend hundreds of dollars each month on supplements, herbs and homeopathic preparations, carefully tuned at every purchase to make sure I’m getting the best possible effect for my money. Collectively, they let
I constantly double-check and experiment to make sure I’m not wasting my money, that every one of them makes a real difference. They are not optional, and there is no slack in the system.
I can’t live like a normal person. If I try, I’m dead. It’s not drama, it’s just a fact.
I don’t choose to live like this because I can afford it. I live this way, and do without other things. I think of those who live in houses or flats with multiple rooms, petting the companion animals they can afford to feed, with their feet on a coffee table or rug, drinking out of their own mugs. And the poor things don’t realize how good they’ve got it, but eye my windfall askance and look for something more to be dissatisfied with. It’s human nature. I’ve done the same, back when I could afford to.
Everything I own right now fits into a messenger bag and a carryon; that’s it. There are three boxes and a dive bag stored with a friend somewhere. I know I’ll see the friend again (to the extent one can be sure of anything), but heaven only knows whether I’ll see the stuff, because stuff tends to leave me by freaks of chance. In the end, if it’s not important enough to keep with me, how badly do I really need it?
I’ve learned to be relaxed about possessions. Having the US Postal Service lose thousands of dollars of art, books and paraphernalia at a formative moment in life, can have that effect. All I need is enough to wear, plus the laptop and e-reader. Other things (pots, knives, movies) are useful, but I find them hard to hold onto; they keep slipping away, one way or another.
I know exactly what I’m going to do with that backpay. Every penny will be used. Not spent, not frittered, not idly indulged with. Nothing will be wasted. It should be just enough.
There is still no excess or slack in the system. But as long as there is just enough, I can make it work.
// |
| Look a little more closely… |
My inward life (narrative, spirit, meaning) and outward life (events, tasks, purpose) have been approaching each other at an increasing rate, and the transparency this creates causes some re-evaluation of publicly-held assumptions like what I am. For instance, is being a writer my core occupation — my “real” job, where “real” means “true, valid, essential”?
It dawned on me that writing, for all its wry, playful and muscular delight,
is, for me, a means to an end. Here’s why.
I’ve considered myself a writer since I was 10 years old. My mother gave me a blank book to write my poems and stories in, when I was 11 years old — a step up from my plethora of scoliotoc spiral-bound notebooks — so at that point I was clearly committed.
But my earliest coherent memories are of comforting her, of trying to rescue baby birds, of helping to wash and change my baby brother.
So there’s something I’ve been doing longer than writing.
As an adolescent, I probably spent more time rescuing cats, dogs and (more successfully this time) birds than I did putting words down on paper.
Writing is a joy, and it’s a tool. I know I wrote the right thing when someone says, “That really cleared things up for me,” or more transcendently, “This helped me so much.”
I write to heal. First, I wrote to heal myself, but now, it’s a way of doing a bit of good in the world outside my own head.
As I remarked to a friend of mine, some people go into the healing professions because they like the feeling of power it gives them to help others.
(Many of them are very good at their challenging jobs, so I’m not inclined to dis their motivations.)
Some of us go into it because we like to help people find their strength and set themselves free.
I used to enjoy some of that power, though I believe I did a good job of maintaining perspective in the face of the quite extraordinary impact an emergency nurse can have.
Of course, what I really loved about that job was the scope and depth of challenge, and the instant feedback. Never a dull moment, and I learned a lot.
Now I have lost what taste I had for power over others, even benevolent power. But I have always loved helping people find their strength and watching them set themselves free.
These days, when I think of anything worth doing (after taking care of myself), that’s what it comes back to: helping people find their own strength, and watching them set themselves free.
Writing lets me do that in absentia, while I’m unconscious, perhaps even long after I’m gone. If I do my job well, others will be reminded of their own strength, or find the clue they need to set themselves free.
So, I’m a healer… who writes.
 |
| At least I have better dress sense and less disturbing kibitzers than this guy. |
I hope it helps.
//However, it lightens the load on my feet and makes transit-sized seating less harrowing.
For getting about, there’s really nothing more shiny than a narrow heiny.
And now, an automatic word from our communication device…
iPhone. Because, when you can press only 1 button, there is no substitute.