What comes first, comes first

Hard lesson I keep re-learning: My very first priority is taking care of this bodymind complex. My very second priority is taking care of my relationships. Studying and writing about this disease and everything that relates to it … no better than third.

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.

Recipe: Kale Shake & the Sunshine Band

Being able to manage means having enough brain and energy to work with. In recovery from a major setback, that means getting down enough kale and berries to choke a couple of horses.

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 mighty steed (maybe)

As some of you know, I have it in mind to travel around the country, in a vehicle I can stand to use for more than an hour a day, and interview fellow CRPSers who know more than I do. If we pool our knowledge effectively, I’m absolutely certain that we can point the way to a cure, so this is by way of being the most important work of my life.

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.

Not even anger is wasted

I’ve been struggling with how to make certain changes when my mind and body are so intolerant of change. I’m not naturally intolerant to change — quite the opposite! — but CRPS makes changes cost me a whole lot more.

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.

Brain fog …and living anyway

I’ve been struggling with chronic brain fog for awhile. I generally wait for a clearer time to blog, but I’m not sure that’s sensible. It’s been ages.

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.

Just enough

The feds owe me backpay. It should come to quite a chunk of money. Naturally, some of my friends are spending it for me according to their own wishes and tastes. Bless their hearts.

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.

  • Pasta? For me, that’s 3 days of poor vision, no memory, no thought, of being so disoriented I’m unable to drive, let alone get to the end of a sentence. Corn and rice aren’t quite as bad, but they still cost my body too much.
  • Beans? Depends on the bean, but it usually means sluggish bowels, insulin resistance, worse nerve pain (because the endocrine misbehavior triggers inflammatory responses), and disproportionate weight gain. Every extra pound I weigh is a tax on my feet and legs, where the pain and swelling are already about all I can cope with. 
  • Cannned goods?  Neurotoxic preservatives that set my thoughts rattling, interfere with sleep, make me feel like someone took a baseball bat to my head. 
  • Soda? Oh boy, let’s talk about soda. The phosphoric acid alone will send my peripheral and central nervous systems into spasms, and the caffeine throws my fight-or-flight response a curve-ball. Don’t even get me started on the corn syrup. Corn fractions are bad, but high fructose corn syrup is a straight descent into neurogenic Hell.

I have to put expensive berries and piles of organic greens in my cart.

  • If I don’t eat them several times absolutely every day, my brain starts to shut down. 
  • If I eat too much of the herbicides and pesticides used in conventional produce, it’s a quick descent into autonomic Hell, with weeks of constant PMS, radiant gin blossoms, and blood pressure that won’t settle down. 
  • I choose the high-end cheddar over the store brand. Want to know what they use to keep the store brand “fresh”? I need to let my bowels continue working, thank you… But aged cheeses provide precursors for the neurotransmitters used in memory and decision-making; when I’m having trouble thinking, sometimes all I need is a bit of good cheese and a couple of hours to absorb it.

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

  • my mitochondria cope, 
  • my nerves fire, 
  • my brain work, 
  • my body repair itself — reasonably successfully, most of the time. 

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.

Vocation and purpose (illustrated)

I’ve spoken of myself as a writer for ages, and made a decent living writing professionally (about software) for several years — until I got disabled as a consequence of the long hours.

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.

(revised 12 March 2013, to add images and improve clarity)

Look on the bright side

I’m losing weight rather quickly. Clinically, this is unfortunate, and I’m not crazy about the bags of skin.

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.

Imp-possible

Healing this disease is supposed to be impossible. In my experience, the word “impossible” is relative.

Some things simply cannot be done: scaling Everest with flippers on your feet, for instance. Scaling Everest in a hot little bikini might be do-able, for all I know, although it hasn’t been done yet. I’ve met one or two people who seemed well suited (so to speak) for the job.

Many things that are widely considered impossible are simply heinously difficult, requiring extra time, diligence, and determination. They may be practically impossible, because most people are not willing to try that hard and can’t imagine that anyone else would be. I’ve met a few of those, too.

When facing the practically impossible, it helps to have a certain blithely F-U attitude, to be willing to flip a bird or two at the forces – or people – that seem to hold me from it. Not to hold resentment, but to detach from their limitations and clarify that they have no hold over me.

It helps to realize that those who tell me it’s impossible are really speaking for themselves, but that doesn’t mean they get to speak for me.

In short, it helps to have that inner steel spring that winds me up beyond any comfort zone and propels my willful butt over the heads of everyone who has failed before they began, and lets me look at them – not with contempt, because that has no place at this height – but with a cheerful bouyancy that holds the possibility that maybe there’s room for them up here, too.

This attitude is springy without being snappish, free-spirited without wasting time in rebellion, wild and fresh with only its own inner guidance for discipline.

It’s impish, in other words.

And this gives us a word we can use to describe things like scaling Everest in a skimpy swimsuit, or inviting cannibals to a linen-dressed tea, or curing CRPS:

Imp-possible.

I rather like that.

Curing CRPS is imp-possible. Excellent. Bring on the bikinis.

Dr. Oz and Paula Abdul on RSD/CRPS-1

Paula Abdul has an unusual subtype of this unusual disease, and in her case, ice is excellent instead of deadly. Having labeled that huge caveat, here is some excellent, informative, very useful stuff to take away:

[The clip was removed from youtube. Here is the show on Dr. Oz’s page:
Part 2 (with demo of animated light show 🙂 )
Part 4 (which they evidently removed from the RSD segment… discusses highlights of the nutritional changes that turned her disease around]

She and Dr. Oz do a very good job of simply, honestly and clearly conveying the basic physical reality of RSD/CRPS-1. I found her presentation refreshingly honest, very sweet, and completely good.

Note her discussing how food and nutrition (especially drastic amounts of produce) is responsible for a “360-degree change” in her condition. She has found doctors that helped her figure that out; what I want is for those doctors to train all their cohorts!

The (usually passive; occasionally active) resistance of the mass of doctors to nutrition is appalling, but at this point it is the most valuable single strategy that’s available to the most people. The fact that it isn’t available to everyone is a horror which I look forward to seeing the end of: poverty and food insecurity are not good for anyone, and being disabled puts most of us into poverty… so we can’t get the kind of food we really need to manage this disabling condition!

My old commercial-grade blender took a dive off the boat. It’s probably making sushi in the middle of the Pacific Ocean by now.  I can’t wait to get another one and get back to making green shakes. The healthy oils and tons of produce are the best “brain-food” I’ve ever found. They keep the pain down to a manageable level and help me continue to be able to do things like, oh I don’t know, write more blog posts.