Category: CRPS knock-on effects

Moderation, part 2 (with footnotes)

Isy / / brainiac, CRPS knock-on effects, food allergies, imp-possible, neurotransmitters, nutrition, self-care, what works
Last week’s experimental overdose was not without consequences. There were a couple of days of the most astounding vacuousness, combined with a lethargy and inertia so profound that I find it hard even to remember… Also, record-setting levels of forgetfulness.

So that was the “overdoing on bad stuff” side of the question.

Because I don’t know when to quit, apparently, I did another experiment yesterday: allowed myself to run out of greens, and had a whole day without my Brain Food shakes. That was the “neglecting the good stuff” part, because of course //wide eyes// one must have both the yin and the yang.

Here’s how that went:

I was scheduled for a massage at one, but my massage therapist had (for once) forgotten to change it in his schedule, so he thought it was at noon. As I was leaving the house, I walked through a cell signal (few and far between here) and got the happy blurt that tells me I have a message. It was Ed, my massage therapist, calling to see if I was all right because it was 30 minutes into my session and I wasn’t there. (It’s not like me to be late.)

Here’s the fun part: I stood there, phone in hand, mentally cursing because now I had to go back in the house and look up his number.

While holding the cellphone he’d called me on.

I went back inside to where I keep my cell phone plugged in, looked at the empty space, realized my mistake, cursed inwardly, went back outside to make the call. Before I started dialing, I realized my vision was too bad to drive without my glasses. (It varies with my brain state.) Slightly panicked, I went back inside for my glasses. I didn’t want to forget and drive off without them, which I feared I might be capable of.

By the time I got there, I’d forgotten why I had gone inside, and was very annoyed with myself for wasting time. I stood there, staring into the blurry living room which I could not see across accurately, wondering what the hell I had come inside for and why it was important enough to keep me from driving off.

I went back outside, and was almost at the car…

when I realized, again, that I couldn’t possibly drive like that. Muttering, “Glasses, glasses, glasses,” so I wouldn’t forget again (which I was fully capable of), I went back inside and retrieved them.

I came back out, found my way to the phone zone, and made a slightly hysterical call to my massage therapist. I was now 15 min. late by my time, and an hour and a quarter by his. Bless his golden heart, he calmed me right down, and my day was considerably better soon after.

I’m preparing for a cross-country meander, meant to be conducted within my limits of capacity – mental, physical, and financial – which may be yet another fantasy, but at least it will be an interesting one.

I’ve taught myself 2 important lessons this week, though, and it’s good to be absolutely clear about them before I have so much else to think about:

1. Sugar in strictest moderation. It used to be a matter of avoiding pain, but this was a neurologic meltdown of a depth and duration best avoided in future.

2. Eat my damn Brain Food shake. I didn’t spend all these years figuring it out, just to dis my own discovery. Figuring out how to get them on the road just became the most important job of my life!

Is it just me? I sometimes wonder how many of us, who turn to sweets for comfort and let our distaste for kale exceed our longing to function (as I certainly did until very recently), could be doing so much better.

My pain levels rest very low, as long as I eat right and drink enough water. And my mental function — as, wow, I have reeeeeally demonstrated this week — is hugely affected by what I do, and don’t, get into my system.

  • If I still ate wheat, I’d be so thoroughly impaired I’d be in need of daily care to make sure I showered and ate and — literally — didn’t wander into traffic. 
  • If I still ate corn regularly, I’d be so sore, cranky and ill-behaved that it would be impossible to find an aide to help me. 
  • If I still ate rice I’d regularly be in so much pain I couldn’t think of anything else.
  • If I still ate grains in any amount (even of good quality, as I used to), I’d be nearly immobilized by the extra weight I’d be carrying, making that care even more necessary but even harder to get. 
  • If I ate sweets for comfort, I’d never really find it. But I’d keep trying, probably by eating more sweets! With insulin resistance, it’s a vicious cycle of longing with temporary and partial satisfaction overlaying a bottomless need.

How many undiagnosed food sensitivities and metabolic dysregulations are deepening the levels of Hell in which CRPSers live? Especially given that it’s a disease of the central nervous system, which most certainly does include the gut? It really makes me wonder.

The largest concentration of nerves outside the brain is in the gut, and there’s a breathtaking new field of science about that, called gastroneurology or neurogasteroenterology (it’s only been around for 20 years, so the name is not yet fixed).

Metabolically, I’m just not that weird,  that so many core, neuro-immunologic issues that show up in me could be all that unusual. It makes me wonder if my brain is really all that broken, or if it’s just signalling really hard…

I know how desperately hard it is to change the way you eat, because it means changing the way you have to respond to your most primitive longings at your most vulnerable and achingly needy times. (I have an extremely high tolerance for uncertainty and an extremely low one for needless stupidity, especially in myself, and that has been a great help in working this out.)

It helps to have a structure worked out and some sort of support: hence the success of Weight Watchers and clinician-approved eating patterns like the Stone Age diet or the South Beach Diet.

These dramatically different strategies coexist because … drumroll please … we aren’t all the same! Some will work on some, others will work for others.

Personally, I’m intrigued by the immunological component of digestion and assimilation (another key characteristic of gastroneurology), best addressed by the Blood Type bouquet of diets. The Type O eating pattern (with added wheat) was what I did naturally when I was fit and well, and guess what, I’m type O.

mmmmm, lunch!

But things have gotten weirder since then…

Now that I’ve finished my tea, it’s time for breakfast. Guess what that’ll be? 🙂

Links:

What comes first, comes first

Isy / / CRPS knock-on effects, imp-possible, loved ones, perspective, self-care, what works
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

Isy / / CRPS knock-on effects, nutrition, recipes
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…

Not even anger is wasted

Isy / / adaptation, CRPS knock-on effects, imp-possible, perspective, what works
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

Isy / / adaptation, CRPS knock-on effects, what works
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.

Look on the bright side

Isy / / adaptation, CRPS knock-on effects
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.

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

Isy / / CRPS knock-on effects, nutrition, what works
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.

EM-hmmmm

Isy / / CRPS knock-on effects, moving/traveling, self-care, what works
Last year, I could tell exactly when the fallout from Japan got here, because my hands and arms swelled up the moment I stepped outside. I could tell which gloves had been left in the rain, because they made my fingertips go numb when I touched them.

Who needs Geiger counters when you’ve got cold chronic CRPS?

So I took off for the summer & went East until September, when the air and sunlight had calmed down quite a bit. However, the entire SF Bay is simply carpeted with wifi, radio, EM, and a whole lot of other stuff in the band that’s so noxious to CRPS — at least, in me … And in almost everyone I know who has CRPS who has taken the time to reflect on what triggers swelling, autonomia and pain.

I had staggering improvements from a trip I got to a hot springs, where I did hot & cold plunges. In all my life, it was the most amazingly recuperative experience that didn’t involve persuading someone else to work on me. That low emotional overhead has a certain appeal, in these dysregulated times. But I do look forward to finding lots of good company along the way.

I’m clearing the boat for sale then taking off on an extended tour of hot springs. I have no idea where it’ll take me, but what a trip! I expect you’ll read quite a lot about van camping, because remember, I’m on Disability and that doesn’t leave much for hotels.

Reality check bounce

Isy / / adaptation, critical thinking, CRPS knock-on effects, insur-dance, mortality, perspective, what works
I got a settlement last year of $40,000. In 8 months, it’s nearly gone. I ran through my numbers and realized that all that money went into taking care of myself (clothes, for the first time in years; chiropracty, not covered by insurance; acupuncture, which should be covered but is sometimes improperly denied; $300/month in supplements which aren’t covered, but do let me function; $500/month for fresh whole food that keeps me from getting worse, more important now that I’m allergic to inexpensive foods like wheat, corn and rice; massage prepayments, for my masseur who was stuck abroad but is finally back & starting to work on me.) There were a couple of large one-offs, but they total the equivalent of the other 3-4 months of the year.
Although I’m certainly far better than I’d have been without it, I’m considerably sicker, weaker, sorer and more mentally impaired overall.
Meanwhile, insurance has — most improperly — denied any of the care that they are supposed to pay for and have covered in the past.
This disease is a bit like cancer in that, if treatment is delayed, you’re liable to lose ground, and there’s no realistic hope of regaining the ground you lose.
I’ve been pegging my hopes on federal disability (the dole, but a relatively generous dole) but even that will provide only one-third of what I need to live on. If I weren’t tending this illness — and could eat grains — it would be enough; that gives scale to these expenses. It takes 40k to support me for a year and the best I’ll get is 14.4k.
If I move ashore, which I’m trying to do (finishing up the boats and selling them being this winter/spring’s project), then it will be considerably less, because rent ashore is so high. However, it’s becoming impossible to function without hot running water, a bath and a laundry machine. Catch-22, or at least a choice of impossible situations.
If I could get a year’s funding for the intensive health work I’d hoped to do this year, I’d stand a chance of regaining enough ground to work and earn. I don’t see how to make that happen. I may be lacking in imagination.
Anyway, I’m beginning to wonder if it makes sense to keep working on figuring out how to mend. I’ve contemplated the babbling fool I’ll become on the present trajectory without supplements and so forth: pride and dignity aside, there’s no realistic way to bear it — the waking with a muddle in my mind, the increasing helplessness and isolation as my friends get more and more frustrated with dealing with me, the waxing helplessness in the face of the most basic tasks like budgets and shopping, the inability to make decisions on the basis of imperfect understanding, the constant wounding of my amour propre as the patronizing tones and “there, there” remarks continue to mount. The startling shafts of clarity when I see just how stupid I’ve been, and knowing I’ll soon fall into the fog again. It’s simply unbearable.
Had I grown up unintelligent, I’d have the skills to manage life with fuzzy brains, but I really don’t. It’s desperately confusing and the constant humiliation doesn’t help.
When I can just sit down and write, focusing on the one thing for a stretch of time, I do fine. (I hope that’s obvious.) The hopping about from topic to topic, without having time to sink into one and pull up the mental flash cards, is becoming impossible. And that’s what life requires.
My mind is thixotrophic: quick moves bounce right off; it takes time and gentle pressure for me to get in.
Though without the rigorously pure food and costly supplements, that focused writing-mind doesn’t work either. It can’t even start.
I read up on Woolf and Hemingway some years ago. I felt the usual poignant poetic feelings about their deaths, gilding over a sneaking suspicion that they’d copped out. But, as my own mental life becomes ever more fraught, I become ever more awed at the strength, grace and nerve each brought to their final stages. The words that sounded just a little bit like whining or wounded vainglory, were really a symptom of the inadequacy of language in the face of an assault on one’s core that defies meaning itself, let alone language’s ability to convey meaning.
I need more options. I need real care. I’m out of ideas.
I liked being happy & relieved last summer. I could do with more of that!

Questing for a strange beast — a laptop I can use

Isy / / adaptation, CRPS knock-on effects, self-care, what works
I’m shopping for a laptop. This is not a trivial task. Here’s why:

– It has to be light enough for me to handle easily.  That right there is a huge barrier. I’m looking at 3 pounds or less — preferrably less.

– It has to be fast enough and strong enough to handle my dictation software, Dragon NaturallySpeaking, while running Windows Office plus whatever provides access to what I’m writing about — the internet, media programs, etc.

You can see the Dragon hardware requirements here:
http://shop.nuance.com/store/nuanceus/en_US/pd/productID.202412500
(click the Requirements tab to see the hardware specs)

I find that, in practice, it’s best to exceed their recommendations by 50-100%, in order to be able to run Dragon alongside the other stuff.  Windows writes crap code, meaning it’s cumbersome, demanding, redundant and sluggish; the same features, if written on a well-designed and well-described codebase, should take up about 1/80th the size of Windows’ codebase.  The damn thing is a monster.

But it’s the only OS that Dragon Professional handles well. Dragon was written to run specifically on Windows, so if I’m doing my budget I have to use Excel, and if I’m writing I’d better be using Word, or all sorts of wretched things happen.

I dream of the day when everyone takes 501 (adaptive-software) compliance really seriously. I dream of the day when they’ll hold off on production until they fix a bug that interferes with Dragon compatibility.  Mind you, I dream of a day when Dragon has real competition at the Professional SKU level.  I’ve tried the lower levels and, yup, all sorts of wretched things happen. (I had no idea my voice was so odd.)

Moreover, I’ve gotten my heart set on solid-state drives, after trashing my much-loved Acer Travelmate (2.8#!) by dropping it from a height of 3 feet.  $1,200 later, I had my data, but no hard drive.  Solid state drives are not bullet proof by any means, but their physical mechanism is totally different and it takes a lot more effort to trash them. As I am getting clumsier, this is getting more and more important.  I’ve filled up a 150 MB drive (despite considerable pruning, keeping music and books on thumb drives) and have nowhere to go, so it will have to be a rather large hard drive.

Fewmets: How I Know when I’m Getting Close

Between my lifting and handling limitations, and the hardware required of a system that could serve my purposes, we’re talking about a fairly exotic beast:

– 3# or less in total weight
– Multi-core CPU with a top speed of 3.5 GHz
– Cache size of 3 MB or better
– RAM of 6-8 MB (8 is better)
– 256 SSD hard drive
– A fast connector, like USB 3.0, to make external drives reasonable to use.
– Windows 7 Professional OS (Vista is against my religion)
– Insurance or warranty covering accidental damage, because it will get accidentally damaged and this is cheaper than a new laptop.

The hunt for such a strange creature is one heck of a challenge.  I feel like Sir Pellinore, King Arthur’s great-uncle, charging after the terrible Beast Glatisant, wearing shiny but battered armor and trailing a puppy on a string.

Of course, I feel the same way when looking for a cure, only more so.

I run into a similar problem with the cure as with the computer: affordability. You’ll see why.

The Long List

I’ve looked at Asus, Acer, Lenovo/IBM, Samsung’s 9 series, Sony, Toshiba, and even Mac, despite the obvious software issues. I have objections to how Dell and HP handle their chipsets and the Windows registry, in that order, so I don’t use them. Fujitsu makes nothing this light.

Neither the delicious ZenBook and MacAir, nor the workmanlike Thinkpads and Ideapads have the chip speed or RAM, more’s the pity.

Besides, though I like Mac, I can’t run my programs on it, and years of experience have taught me that a virtual Windows machine is just not the same as an actual Windows machine.

The Short List

I’ve found exactly two machines that come close to meeting my criteria:

Sony Vaio Z:
$3,100 as spec’d.

Benefits: 2.6#!
Drawbacks: DVD drive and USB 3 in port replicator.

Toshiba Portege R830:
$2,700 as spec’d.

Benefits: Has a built-in DVD drive!
Drawbacks: 3#.  (Due, no doubt, to the drive.)

Conclusions (so far)

The .4# difference is huge to me. It may well be worth the extra $400 (wherever they come from) because of the huge difference in grab-ability. Also, the extra ports on the Vaio’s port replicator are worth a lot.

So I’m leaning towards the Vaio on its features, but if I have to make the choice solely on price, I’ll go for the Toshiba.

In either case, the only thing to do with a really expensive laptop is to make it look like a total POS. So I’m thinking of a skin that will not only cover the brand name but look like a tire tread or barbed wire or something that growls through the hole in its lip, “Don’t touch me.”

Psychological tactics work, because crooks — especially amateurs — are ever so human. …And that’s another random life-lesson I learned from working in the ER.

Donations would be lovely, of course, but I hardly expect them. For those saintly people who want to contribute to this quest (and of course the quest for a cure), there’s now a button in the blue panel on the lower right for the purpose. May all good things come to you.

LINKS
Both of the lovely monster images were snagged from this blog:
http://archideaconalwhitterings.blogspot.com/2010/03/whitterings-april-2010.html

I got the tire tread image from this blog offering free designs:
http://creatingthehive.com/blog-post/143186/tires-amp-treads-free-mds-punches