CRPS, or Complex Regional Pain Syndrome (Type 1), is a change in the nervous system that's usually triggered by a very painful episode. The bad kinds affect the brain, nerves, muscles, skin, metabolism, circulation, and fight-or-flight response. Lucky me; that's what I've got. ... But life is still inherently good (or I don't know when to quit; either way) and, good or not, life still goes on.
Showing posts with label food allergies. Show all posts
Showing posts with label food allergies. Show all posts

Sunday, August 26, 2012

Dietary limitations? Where? I'm too busy feasting, thank you

Dietary limitations are a recurring theme in my life -- and that of many who read this.  There's little self-pity left in me for it, because my world of food has opened up in magnificent new ways. I hardly miss wheat, for instance, because I have so many other wonderful things to wrap my teeth around.

This attitude is essential to a bearable life.  Admittedly, it's an adjustment to learn not to think in terms of "not"... Wait, let me rephrase that...

Since it's hard to get started with food changes, and my energy and attention are limited, it helps to have people show me alternatives.The past decade or so has been filled with people who do things -- like eating -- differently from how I did, and that has been a huge help. I've mentioned the Brain Food shakes (once or twice) but the blender is only one of the arrows I have in my dietary quiver.

I've also had the advantage of living in "foodie" areas where it's not that hard to find alternative sources of nutrition:

- heritage and heirloom strains of vegetables abound (a good way to reduce exposure to problematic proteins is to eat unmodified strains),

- gluten-free mixes of several different brands let me figure out what works for me (I do best with sorghum/tapioca based blends), and

- it's easy to find foreign foods like quinoa (a quick-cooking grain which is extremely high in protein and tastes fantastic with a little butter) and English cucumbers (which are more digestible than the US kind).

It also helps to experiment with different forms of cookery. For instance, I loved discovering sprouting, because it creates lots of food from very little outlay, it's mechanically easy, and it takes only a few seconds of effort at a time -- perfect for CRPS-induced ADD!

There's a lot of, well, let's call it culture, around sprouting. Don't be fooled by the complex gear and the long lists of instructions. Those complications are for those who find it satisfying to work out the details.

That's fine. It's also optional.

Sprouting

It's really very simple. There are only 3 things you need to have and 3 things you need to do.

Have

1. Clean jar,
2. organic (or close) sproutees,
3. safe water.

That's all you need. A mesh top for the jar is handy, but you can make one with cotton gauze and a canning band, or by drilling the original lid. Toss the used gauze in the washer and reuse, or just toss it and cut off more.

Do

1. Water them.
  a. Soak sproutees overnight, covered +2" with water, in the fridge. Pour out water in the morning.
  b. Then rinse 2-3 times a day, more if it starts smelling anything other than fresh and bright. Just stagger to sink, pour water in over gauze/mesh, give it a gentle slosh around, and pour it out. Repeat.
  c. Park aslant, head down, in a clean drainer or in a lip of the sink. Drains excess moisture.
No fussing.

2. Grow them until the tails are at least 1/4" or 60mm long, for best nutrition; up to 2", if you like greenery. Takes 1-3 days to get to 1/4".

3. Eat them fresh; keep a couple jars going so you always have something coming up. It's very encouraging. As soon as I empty a jar, I set it back up.

Whatever I sprout, I buy it fresh enough to have its proper color and scent, and that yields 80% or more of sprouted germs. Less yield with older product.

I've discovered that tiny red lentils sprout quickly and have a subtle sweetness that's wonderfully satisfying and goes with soup, salad, on sandwiches, in rollups, and (usually) straight out of the jar.

Sprout amaranth to just over 1/4", add half and half or cream, sweeten with a touch of brown sugar ... it's halfway between Cream of Wheat and Malt-O-Meal. I was stunned. Had to try it a couple more times just to be sure.

If you're inspired, please let me know if you discover any real gems, like amaranth cream of wheat :-)

Moderation, part 2 (with footnotes)

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:

Sunday, March 18, 2012

Gluten exposure and recovery - Testing myself (silly me)

Gluten: really is that bad

Yesterday, I walked past the bread display at Trader Joe’s three times, breathing deeply. It smelled good, but not as good as I remembered. That was odd.

As I left the store about ten minutes later, my face turned beet-red and puffed up, my brain went into a deep white fog, colors faded to pastels, and the pain left my arms and foot briefly to return, five minutes later, to every joint in my body.

I was in full neurological gluten reaction. From inhaling near a bread display!

I did that in the first place because I just could not believe I was that sensitive to something I’ve eaten – and really enjoyed – all my life until last summer.

I know there’s a difference between the kind of food sensitivity where, if you avoid that food most of the time, you can tolerate a little now and then with no trouble; it’s about keeping the contact down below a certain minimum. Then there are the sensitivities where, if you eat a bit on a regular basis, your body retains an ability to deal with it and you don’t get a reaction (vegetarians who go back to eating meat are familiar with this – it takes awhile for the body to readjust.) And then there are the sensitivities that amount to true allergies, where any contact causes a reaction and the reaction can get intense enough to create a crisis.

That was an intense reaction. I’m not interested in seeing how much more my face can inflate.

It’s true that I used to eat wheat regularly and experienced nothing as dramatic. Would it be less dramatic if I ate a little on a regular basis?

Considering how quickly my health was slipping while I was eating gluten, and the fact that I continue to get sicker but I appreciate that it’s at a slower rate, I don’t see any real point in making the experiment.

Moreover, the literature on gluten allergies does not support that. The science indicates that, if your body has trouble with that particular protein, then the further you can stay from it, the better off you are.

I called my acupuncturonaturohomeopath. He gave me a recipe for gluten exposure, which is mostly about buffering the heck out of the molecule. I cobbled together a gluten exposure kit from my talk with him and my nursing background.
Gluten Exposure Kit:

-          2 Alka Seltzer tablets,
-          4 Tums,
-          500 mg body-friendly Vitamin C (not more),
-          10-15 capsules of activated carbon, to soak up any toxins in the gut. (More for eating it by accident, but it can’t hurt. I think it cleared a few things up, in fact.)

Just add water! And plenty of it.
Keep it in snack-baggies in key places: glove compartment, purse, first aid kit, desk drawer.

I turned normal Isy color almost immediately and then had a great, rippling burp every 10 minutes for about half an hour – feeling considerably more human each time. A day later, I’m not quite up to where I was before exposing myself, but am LOTS better than I’d expect to be, without that treatment. A reaction like that usually puts me down & out for about three days. Drooling Barbie doll. It’s awful.

Why so little Vitamin C? Doesn't your body just wash away the excess?

Actually, if you take in excess Vitamin C, your body washes away all of it that it can still get hold of. 500 mg seems to be the sweet spot of maximum absorption and minimum waste. I used to megadose it, but with a frail system, that's intolerable. 500 mg lets me take in and use every bit of it. If I need more, I just take it 3 times a day instead of twice.

Meditation and Reiki: really is that good


Today, I had to test myself on the value of my mental disciplines. I’m not sure why I’m testing myself so much; I doubt myself, perhaps. There is something surreal about what this disease does to you; I suppose the occasional reality check makes sense.

I didn’t meditate last night or this morning. The emotional surges are quite noticeable, but I’m well aware that they are what they are, which is not me.

After my gluten experiment, I feel no need to push this farther.

I’m now perfectly convinced that my relentless internal work does keep the rudder in line, the engine tuned, the brake pads operational, etc. Basically, it keeps CRPS from taking over my brain.

Dammit. I wanted to be normal again. Though, to quote the fabulous Stockard Channing in Practical Magic, “Darling, when are you going to learn that being normal is not a virtue? It rather denotes a lack of ambition!”

Thursday, January 26, 2012

Sunny and warm

Hungry in grainland
Hemmed in by "thou shalt not" eats
Warm sun on my arms
Rough weeks in winter
Are harder yet. These rare days
Keep me from screaming