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.

Wednesday, September 18, 2013

livinganyway.com

I've moved the blog to its own URL, livinganyway.com, and put it on a wordpress backend, so the full URL is what you see in the title: livinganyway.com/wp/

All the posts are there, and all your wise and lovely comments. And I hope it doesn't get hijacked, like this site did.

Saturday, June 8, 2013

Recipe: Even Brain Food Shakes evolve

As my digestion has gotten more frail, I've had more and more trouble with my Brain Food shake.
 
I went to a powder, because organic kale was hard to find and unwieldy,  and the nonorganic kind smells like a chemist's armpit. And was still unwieldy.
 
But those shakes still hit my stomach like a cannonball.
 
J listened to me complain for the second day in a row and said, "Don't eat fruits and vegetables together. Of course it's impossible to digest."
 
I stared at him a moment. "I used to know that," I said with chagrin.
 
That was over a month ago and I think I've finally figured out how to make the greens taste like something other than pond.
 
So here are the current incarnations of my Brain Food Shakes, the simplest way to get maximum nutrition with minimal effort:
 
Morning Shake:
 
- 1/4 pound Trader Joe's frozen Wild Boreal Blueberries (high anthocyanins, low toxins)
- heaping soupspoon almond butter (good oil, protein, minerals) (TJ's is cheapest)
- Cal-mag supplement (for nerve transmission, teeth and bones; 1 tablespn Lifetime brand, blueberry flavor)
- 1/8 tsp clove powder (massive antioxidants, calms nerve pain, and I love clove)
- ~3 oz apple juice concentrate (malic acid helps clear cellular detritus)
- stevia (stabilizes blood sugar, cuts any lingering bitterness)
 
Whizz it until the flakes of blueberry skin are more or less uniform and quite small.
 
I've recently added:
 
- fat pinch of schizandra berries (massive antioxidants, seems to stabilize neurotransmitter behavior; whole berries take extra time in the blender)
- lecithin (improves digestibility and oil uptake)
 
Once everything's whizzed down smooth, I add at the last minute:
 
- 1/2-3/4 cup blueberry kefir (I really like Lifeway brand, blueberry or plain)
 
The point of blenderizing is to chop open those cells so the nutrition is easy to get to, but with kefir or yogurt, the cells only work if they're intact. So I whizz in kefir just until blended, maybe 2 seconds.
 
I mix in blackberries and fresh local berries when I can. On the road, I use dried currants, which are an overlooked "antioxidant powerhouse", in modern marketing lingo. They can make the sweetness overwhelming, though.
 
This afternoon (fruit is more appropriate in the morning, veg in the afternoon) I tried something like this:
 
Afternoon Shake:
 
- Vegetable juice (TJ's Garden Patch, but I'm open to suggestions)
- Scoop of green powder (I get distinct results from Garden of Life brand Perfect Food Raw; brain really perks up)
- 1/4-1/2 an avocado (cleans up blood vessels, great oil)
- 2 handfuls chopped kale (most nutritious veg per calorie; thanks to TJ's for taking the work out of prepping organic kale)
- 1 handful sliced cabbage (sulfur for brain, glutathione precursor; also, does something magical to the kale so it tastes smooth and mild)
- salt (reduces ANS/POTS symptoms of dizziness and wonky bp)
- lecithin
- 1-2 individual grains of Epsom salt, a.k.a. magnesium sulfate (sulfur for the brain, magnesium for nerve transmission and electrolyte balance)
- water enough to make it go
 
Has a wonderfully fresh, pleasingly grownup flavor. A bit of cilantro, onion and lemon, and you could call it gazpacho.
 
I'm considering a pinch of curry powder, for the antiinflammatory circumin and that wonderful taste. It doesn't need it, but it could add a bit of variety. 
 
I've often said that it HAS to taste good, or I won't be able to keep doing it. And, since I test regularly (that is, try to do without), I know I have to keep doing it.
 
And as long as it tastes this good, I'm happy to do so.

Wednesday, June 5, 2013

Your normal is my catatonic

On top of my careful eating and constant self-policing... I've cut my online time to the bone, to conserve neurotransmitters and wear and tear on my telomeres.
 
I'm moving to a sunnier flat, to improve vitamin D uptake and exposure to beneficial UV bands.
 
I've gotten a cat, to lower my bp and help stabilize my diurnal cycle. (They get stirred up and worried when you stay up past your bedtime. It's the cutest form of nagging ever.)
 
I'm doing my autogenic exercises as often as I can bear to, to bring my baseline level of overdrive down and begin to approach "normal".
 
For better or worse, I'm getting more closely in touch with what a "normal" state of relaxation really feels like -- and realizing how far from "normal" it is for me.
 
If I am as close to "normally" relaxed (or "normally" tense -- its the same thing) as I can get, I'm nonfunctional.
 
All I can do is lie there, bathed in the peaceful antitoxins of adequate tissue perfusion and a still mind. Getting up requires dropping that calm, because there just isn't enough energy there.
 
I'm far, far too tired to function as a normal person. My very cells are tired -- I can feel it when I let down this chemical structure of overdrive and tension. Their very organelles are tired. The vacuoles, I bet, are tired.
 
Why? I mean, weariness is all very well,  but isn't this a little ridiculous?
 
Ridiculous it may be, but not irrational or inappropriate. Here's why, as far as I've thought it through.
 
- For one thing, pain is exhausting. An hour of pain is as wearying as an hour of running, but without the cardiovascular benefit or endorphins. Quite the opposite. And it never really stops.
 
- Moving the body with degraded muscles is hard work.
 
- Making decisions and doing the business of life (rent, bills, laundry, shopping) with a brain that flickers on and off... requires a lot of repeated trips and extra effort -- also tiring.
 
- Remember that list of JCAHO-rated crises I mentioned on my last post? That was a sample from the latest in a series of years, each of which was about as harrowingly difficult, in different ways. Truly, I had no idea that so many ghastly things, most far too protracted for Hollywood to use in even their most grueling work, could grind through one measly life.
 
So maybe I should give my weariness some credit. Maybe I should stop bitching about how I just can't get things done. Now that I'm trying to ratchet my ANS responses down from the stratosphere, maybe I shouldn't wonder that it's becoming hellishly difficult to get off the couch most of the time.
Maybe I should stop obsessing on my characteristic need to be productive.
 
Maybe it's finally time to stop ignoring the fact that I'm really damn TIRED, and put my attention on getting more rest.
 
That might be the most productive thing I could do.

Sunday, June 2, 2013

Changing the glass, resetting limits

I have to resurrect a set of rules I thought I'd gotten past:
 
- No internet before noon.
- No more than 2 hours daily for all internet activity: email, FaceBook, Twitter, research, posting and illustrating blogs.
- This includes surfing on the phone.
 
I will be moving upstairs to a brighter apartment that's arranged better for two. J still plans to move in come September, so I'm grabbing the opportunity while it's there.
 
For the past several months I've been learning to notice and deal constructively with signals from body and brain. Part of the reality of this is, there's a ton of backlog to sort out.
 
This is significant, partly due to CRPS and partly to the nature of last year, which was an ongoing festival of upheaval:
 
- Got SSDI.
- Had to save life of same friend twice in three months.
- Sold my boat/home.
- Moved 3 times.
- Travelled for 6 months at a stretch.
- Started an important romantic relationship.
- Had 2 serious threats hanging over my own life.
 
It's not good for the ANS, all this excitement.  I'm not personally opposed to eventfulness, it's just really hard on my regulatory systems. Given similar situations, I'd probably have to do similar things, but it's time to chill the h#11 out now.
 
I'm moving and it makes my lizard brain howl -- if lizards can howl.
 
I'm moving upstairs,  not far at all. And it'll be safer -- you can't even find it from the road. It'll be brighter and quieter. The paint scheme is far more cheery and pleasant.
 
But I'm moving, and at some level, that's an absolute... That is, an absolute brain-fogging mess of suppressed fight-or-flight response and irrational despair. It's seriously altering how well and how long I can think... changing the water level in my current glass, so to speak.
 
Packing my few things is not a physically imposing task,  but moving at all is a brain-crippling one, apparently.
 
I still have to maintain my care schedule, keep appointments and stay caught up (-ish) on laundry and groceries, none of which is optional.
 
When my adrenals are under stress, my brain gets quickly exhausted, especially in the morning. According to my old acupuncturist, that's a classic diagnostic indicator. Cognition is linked to adrenal function, he says.
 
The thing to do is go with it, and not make decisions or try to parse communications until the whole system has had a chance to wake up and get moving. Thoroughly.
 
So, out of respect for my brain's needs, I'll be spending my mornings playing with the kitten and catching up on my bookshelves, instead of being online.
 
Oh gee, isn't that tough :-)
 
And when I've moved in and gotten the new place under control, with no intention of moving again until I've got a "forever home" to go to, I'll find out just how resilient this brain really is and see what parameters make sense then.
 
Until then, the online world will go on with, at most, 2 hours a day of attention from me -- for research, social networking, web page managing,  and posting & illustrating blogs.
 
We'll manage just fine.

Tuesday, May 14, 2013

Half-glassed -- a metaphor for flexibility

We all know the old trope: half full, or half empty?

I worked at Borland, which means, I worked with highly capable engineers who were accustomed to doing things right. I once got a very friendly, but very earnest, lecture about the half-glass phenomenon: the point is not whether the glass is half-full or half-empty.

The problem is, the glass was not designed for that amount of water. You either have to fill the glass,
... or use a vessel that's designed to hold that quantity.

The whole half-glass thing drives them crazy. It's not a matter of attitude, it's just bad design!

I love engineers. There's something adorable about the way they storm the gates of Accuracy, convinced it's the same as Truth.
At first glance, that attitude looks silly at times. On deeper thought, they're usually right.

I was thinking about the engineering approach to the half-glass issue, while my subconscious was still bathed in reflections on Rosalie.

I realized that the engineering approach is exactly what those of us with crippling disease have to do: our glasses, our outward lives, were designed to hold a lot more than we've got right now.

We either have to build up what we have to put into it, or we need to use a smaller glass. A significant disparity between what our lives can hold, and what they do hold, is depressing. They need to match up better.

Rosalie alternated, and I think all of us with chronic disease (and determination) do that as well. Sometimes we can build ourselves up, and expand what we can put into that glass; sometimes we adjust our expectations and commitments, making the glass smaller so that the contents fit.

I like this image, because it reminds me that I can do either thing. When pushing against my limits doesn't work, when I really can't get another drop of water into that glass, I can pull back my expectations and switch to a smaller glass.

By now, I have mental cupboards full of wildly mismatched drinkware – a glass for every occasion, for every level of function so far.
The one on the right is for when my hands don't work.
"My cup runneth over" takes on a new meaning now, doesn't it? When it does, I'll reach for a bigger glass.

Rosalie's gold

I met Rosalie about 15 years ago, when she put me up for my dad's second wedding. I fell in love with her on sight, when she threw open the door and bathed me and my brothers in such warmth and delight that even awkward, dorky I felt completely welcome in her life.

I stayed in the little den next to her bedroom, overlooking the pool. Her house was built in the 50s, when her neighborhood was inexpensive and remote. It has an endless view across the whole valley of Los Angeles.

She was a spring chicken, only 83 years old. She had already had two back surgeries to fuse vertebrae, and scooted around – with characteristic energy – in the distinctive crow-backed shuffle of post-fixation chronic back pain.

About five years later, my CRPS journey started. Rosalie was my first model of how to handle increasing pain and disability with a degree of grace and poise. Whenever I came to visit my stepmom or her mother, I'd see if Rosalie's and my schedules would allow a visit. In all those years, I don't think she failed to raise a smile more than once or twice, despite some brutal trials.

She had several more surgeries, implanted devices, physical therapy, and she swam laps in her pool whenever she could possibly manage it, inviting whoever came over to swim with her to have a glass of wine and tonic water (or gin instead of wine, for my stepmom) afterwards.

She kept love in focus: for her offspring and her dear friends, she had a seemingly bottomless well of love and regard, regardless of the vicissitudes of life and relationships.

She was always herself: whatever her opinion, and whether or not you agreed with it, she would let you know. No energy and no words were wasted on making things seem nicer than they were. You never had to wonder what her agenda was. And she managed that without ever being pissy or the least bit mean. Conservation of energy, including emotional energy, is a big issue for pain conditions, because pain is so exhausting; she didn't waste a drop.

Yet she was famous for the radiancy of her outlook, not to mention of her smile. As soon as she had answered the question, "How are you?" with customary honesty, she visibly put that aside, turned her bright eyes on her visitors, and got them talking about more interesting things. She kept her focus where it belonged: on the rest of life.

As I said at her memorial service yesterday, she always looked for the nuggets of gold, whatever else was going on. She always looked for a way forward, whatever held her back.

If you've read this blog for any length of time, you know that I hardly ever write about anything until I've found the nugget of gold. You know that I always look for a way forward, whatever holds me back.

I can find this in myself, in large part because Rosalie gave me a living, breathing, occasionally querulous but never unfair, always loving, always real example of how to do it. I need those living models. I can learn only so much in theory.

This is real life. And sooner or later, it ends. I'm slightly bowled over by this intensely personal realization that the true radiance of a life can outlast the grave. Rosalie's radiance is with me still, reflected off these nuggets of gold.

Sunday, May 5, 2013

Moving is hard anyway

Intermittently, this page is getting redirected (the Back button usually takes you back to this blog) and Google is becoming more and more problematic. It's like their old adage of "Don't be evil" is fading into the mists of time, along with Borland C++ and proper punctuation.

I'll be switching my active blogs to new URLs, but don't worry, I intend to redirect this link myself (take that, hackers!) to the new link.

It'll be good.

In the meantime, I'm in geek hell. If I could remember more from my software-career days, I'd be in much better shape, but I have to relearn a bunch of basic stuff with a CRPS-riddled brain.

Yeah. It's a ball.

So there's some blood, sweat, tears, and probably no further posts until this is sorted out, but then (I hope) things will be even better and easier and cleaner than before. 

Those of you much-cherished people who've subscribed via email, I'd love to be able to port your subscriptions myself, but we might have to do that the old-fashioned way. There will definitely be a way to sign up again on the new page.

Wish me luck, patience, insight, and adequate brains...

Tuesday, April 30, 2013

Breathing

Sooner or later, it all comes back to breathing.

Without adequate breath, obviously, nothing else matters. As a sometime ER nurse and continuing asthmatic, I'm more than usually aware of that fact.

I mean something beyond that, though. Something more pervasive.

Breathing, like walking, is one of those things that I keep coming back to as an interesting study -- one that's so fundamental that I forget, in between times, exactly how deeply it changes everything else in life.

I first began meditating in my very early teens, after basic instruction from my mother:

1. Think of a simple, unemotional mental image, like a burning candle flame, and breathe.
2. As thoughts come and go, let them go (sometimes, especially at first, I had to chase them off) then...
3. Bring your attention back to the image and the breath.

The image didn't do me much good – I think fire is a little too emotional for me – but simply being at home to my breath, and letting the haywire-ness of the day drift off into the mist... with my odd and beguiling little cat softly nestled against my leg under the covers... did me all the good in the world. Especially at 13.

The language of breath is interesting. Breath, spirit, life, and insight often share the same word or sounds in languages around the world. For instance, in English, "inspiration" means both a breath, and a sudden idea; the root word means spirit. There is no divide between these ideas.

(Life, breath, spirit, ideas... how can these be separated? How can a life worth living, let alone a bearable life, let alone a pulse, exist without all of them?)

As I said, I've been breathing intentionally for decades. In my 20's, I taught my ER and ICU patients a particular form of breathing which, I'd noticed, cut their pain response, lowered their blood pressure, and improved the level of oxygen in their blood -- no matter what they came in with.


In 3 breaths the difference was noticeable, and if I could persuade them to take 10, we were halfway home.

It goes like this:

1. Breathe in through your nose.

2. Draw the breath all the way down into your lower abdomen.

3. Let it out through gently pursed lips, like softly blowing out a birthday candle.

4. Repeat.

The abdominal breathing improves lung expansion. The slight backpressure on the exhalation nudges extra oxygen into the system (the importance of oxygen can't be overstated, especially in emergencies) and sends a gentle message to the blood-pressure sensors in the neck, telling them to lower pressure.

This kind of breathing activates the "calm down" part of the central nervous system, that is, the parasympathetic branch of the autonomic nervous system.

The extra oxygen helps clear some of the oxidative damage away.

It feels wonderful.

And it always works.

(Clinical note: for people with COPD, I did 2-3 breaths, and checked in. As with most adults with a chronic disease, they could generally be trusted to sense their limits and stop. Youngsters soon learn, though very few youngsters have COPD.)

Recently, I've learned a slightly different technique from the same psychologist I mentioned in my last post...

1. Notice my breathing. That's all. Let everything calm down for a bit.

2. Draw the breath into my abdomen.

3. Gradually increase the size of those abdominal breaths.

4. Let the midchest join in, getting still more air in. Exhale from the top down.

5. Eventually, let air into my abdomen, then midchest, then upper chest -- inhaling from the bottom up. My lungs are pretty fully expanded in the inhale now, and I still exhale from the top down.

6. I tell myself: My arms are heavy and warm. Soon, they are.

7. I tell myself: My legs are heavy and warm. Soon, they are.

8. I tell myself: My lower abdomen is warm and relaxed. The whole bowl of my pelvis becomes a sea of lovely calm. (I had no idea how much standing tension was stored there, at the bottom of the spine and where all the exits are -- though it makes sense, when I think about it...)

9. Then I stop contriving my breathing, and let it just flow.

After about 15 minutes, well, life is good. Really good. Talk about activating the parasympathetic nervous system.

I've forgotten what else I was going to say. I want to be that peaceful and warm right now.

Oh yeah. The point is this:


Breathing well makes everything better.

It shouldn't be that simple, but it is.

Excuse me. My limbs need to be heavy and warm... In a good way.

Tuesday, April 23, 2013

The wall, redux -- with demons on the side

Sooner or later, deep and chronic illness (like, oh, let's take an example at random, CRPS) will bring you face-to-face with your worst demons. It's only a question of when, and precisely how.

When I came to adulthood, I realized that I felt a powerful need to earn my right to take up space and breathe the air. You'd think I'd be a cringing slave with that underlying attitude, but I wasn't. I felt I deserved good pay, reasonable work/life conditions, and common courtesy, because that was fair; I just didn't deserve to live.
Once I could no longer work, but had to fight like mad to live, this was a bit stressful. Like many, I almost didn't make it. But then, as the very deepest trough began fading into memory, I noticed that something remarkable had happened.

Rewind about 10 years… I was a nurse for eight years, which put me in a critical relationship to others at critical points in their lives. I might have dealt with 10 patients in an hour, but, in the moment that I was dealing with each person, that was the most important person in my life. I may have coded hundreds of people, but every life I fought for, I fought for with all I had.

There were no caveats or conditions: if you were my patient, you had my absolute attention every moment I was with you.
I think this healer outranks me, but you can see
how focused he is on his patient. It's like that.
I found that it's impossible for me to work hard for someone's survival, and not come to care about them – no matter who or what they are.

Fast forward to where we started, after the deepest trough, around early 2010… I had spent several years increasingly incapacitated, used up all my money, all my favors, all my savings, and lost a lot of friends – some of them to the Grim Reaper.
I won't go into the brutal and abusive bureaucracy of California EDD or Oakland Social Security offices, because if you haven't been through it, you wouldn't believe me. That bad. Worse, even.

I woke up one spring day, with a strange sense of dawning inside. It took an hour or two to wake up, and to realize that I'd been fighting so hard, for so long, for my own survival, that I had become important to myself.

I no longer felt I needed to earn the right to live.
Ever since that time, I've never had a serious case of any kind of block – writer's block, self-care block, learning block, anything – that lasted more than a couple days, unless it was explicitly disease-related.

Then, with this move to a strange area, with no connections, near a city I almost loathe... To get real care, for the first time in years, from seven highly skilled and capable professionals…

I hit a wall. Not just a block, but a huge, massive, precision-crafted, towering, deeply bedded, gateless wall.

Since writing "Frustration at the wall", I've been faking it in the hope of making it. That's a lot of weeks to keep running up against the same damn wall!

I finally started talking about it – I'm a writer; I'm a woman; I process by words; let's move on – and began to get unscrambled. Then I had the deeply disconcerting pleasure of having my brain picked apart, cleaned with a dental pick, and neatly reassembled by the deliciously incisive Dr. Faye Weinstein. 

I can't help thinking that the following is going to strike a few chords with some of my lovely readers...

I am, as she said with characteristic precision, "a helpful, compulsively self-reliant minimizer." Really, why should I trust these people, who wield the power of Gods over what happens to me?

There's a deep part of me that says "blow that, let's go hide instead" and off I go, hiding behind advising on Facebook and diving into books and catching up on others' crises; my condition is not that bad, so my care is not really that important, and it's not like these people care more for me than their own crap anyway, so I'm on my own really.
My distraction activity is all very worthy, so I needn't justify it. But, well, so much for the many new things I need to do to put together my own health...

Unconscious reactivity could be the death of me yet.

I said this illness would raise all your demons, even the ones you've hammered a stake through the hearts of. It turns out that the squat and fetid cranks who propped up my old conviction that I "don't deserve to live" are still there, farting wetly and hawking loogies.
With apologies to Heironymous Bosch.
The demons of our earliest perils can shape our responses to major change forever. The trick is to see them for what they are, face them honestly, and put them back where they belong: in the past.

(Easier said… I think a booger just landed in my hair. At least, I hope it was a booger.)

To add to that, with years of excruciating work behind me and more ahead, my old motto of "change or die" doesn't carry the same weight: Yes, part of me wants to lie down and die. The frantic, aching, endless weariness is beyond description.

But change is more interesting. A lot more interesting. And I only get to do this life once.

Conscious curiosity could be the birth of me yet. With luck.

With a better sense of what I'm doing, I'm preparing to turn and, with tactful and gentle persistence, come to terms with those monsters.
I might as well. I'm going to be here awhile.

Speaking of which…

Marathon training update

After one day to recover from the trip south, I was able to pull off my .8 mile route up and down this hill, and recover enough a few hours later to unpack the car (that's a lot of steps!) and get some things done. Today was a lot of appointments, which involved walking at least a mile on city surfaces.

On Thursday or Friday, I hope to increase my hill walking to 1.1 or 1.2 miles. We shall see. No more overdoing.

Sunday, April 21, 2013

Need more than "Dysphoria"

There's an impressive clinical word for "feeling yucky" -- it's "dysphoria." It's literally the opposite of "euphoria."
One of these people is Dysphoric and one is Euphoric. Guess... :)
The trouble is, there are so very many ways to feel yucky, or dysphoric, especially with a disease like CRPS, but only one word to describe it all. Our experience of life no longer maps to that of a normal person, but language can't describe what we experience. However elegant it sounds, "dysphoria" is inadequate.

That's about to change. Here are some words I'm adding to the lexicon, a short selection of the most common and most describable (because some are indescribable) of the dysphoric states I move in and out of...

Dysphoria Sunnysidedown
The particular kind of yucky I feel when I get up before I'm ready. It takes about an hour, usually, to avoid D-Sunnysidedown.


Otherwise, I get tremulous, nauseous, my heart races (but quietly), and I'm aware of a particular kind of fragile ghastliness in a minor key. If I really get up too fast, I fall over -- muscles quit. This adds up to Dysphoria Sunnysidedown.



Flip 'em!
Dysphoria Darkofnoon
This is a natural consequence of D-Sunnysidedown and usually happens later the same day, but occasionally happens by itself. Darkofnoon involves feeling peculiarly ragged (as if my adrenals had been in overdrive for hours, which is accurate if I arose too fast), forgetful, physically weak, slightly shaky, and of course nauseous. Sometimes dizzy spells.

There's a more solid kind of ghastliness, more in a dominant chord. Dysphoria Darkofnoon usually happens when the day is brightest, between 11 am and 3 or 4 pm.

Lying down periodically helps me get through the day, but I'm not likely to be quite right until a good night's sleep and a proper start to the next morning.

Dysphoria Hate2Bme
Stunning levels of distraction, with a dense pale-grey cloud wound around and through my mind and perceptions, dissolving what it doesn't hide.

It insulates me from such trivial issues as major appointments, where I put the keys, and the state of traffic lights. I can tell where my body is in space, but not how it feels. Likely to injure myself, risking further spread.

It would be tolerable if there weren't any consequences or anyone leaning nervously away while looking at me with worried pity. When I'm experiencing Dysphoria Hate2Bme, the humiliation and underlying fear are the most dysphoric elements, though there is something intrisically unpleasant and destructive-feeling about the dense grey cloud.

Dysphoria Mitoshriek
This happens when I've overtaxed my body, though sometimes it happens by itself. I think of it as the mitochondria in my muscle and nerve cells all setting up a synchronized shriek of anguish as they fall over in a dead faint. (I don't know how they scream while fainting, but they seem to manage it.)

It feels like my soft tissue threatens to dissolve when I try to get up or do anything. There's a sort of wholesale, pitiable unpleasantness in mind, body and soul with the least physical effort.

My muscles react with a sort of "You're kidding, right?" when I try to use them, and if I push through in order to get something done, it's done by pure determination and then I'm out of commission for a couple of days. I pay hard for pushing back against Dysphoria Mitoshriek.
For all I know, my mitochondria have nothing to do with it, but mito self-care seems to help: tons of antioxidants, lots of vegetables, and as much horizontality as I can stand. I can tell when it's time to start moving -- about 3/4 of a day after I start really wanting to.

One thing that is no worry at all: I don't ever have to worry about being too lazy.

Your faithful writer at 2 yrs old. I refused help; I was going to
cross that dry riverbed all by myself, come Hell or high water.
Photo: JLD Tifft, used by kind permission :)
Bodies and minds, like engines, were made to go, and I'm most at home when I'm going in mine.
After the intense inward training of living as usefully and zestfully as possible despite CRPS, can you imagine what it would be like to have all this determination and energy unleashed on the world if I were finally well again, and could focus on, remember, and do things on a vaguely regular basis?

Can't wait to find out.

So this is peaceful ol' me...

...saluting all that keeps me from that.
Speaking of which...

Marathon training note

I'm stable with walking 1.5 miles at a time, and recover fast enough to do more later that day. Will aim for 1.8 later this week, after recovering from this trip.

Despite spasms and cramps etc., I made it all the way home in 1 day yesterday, instead of splitting the drive into 2 days as I usually must. This amazes me. My eyes didn't cross and my mind didn't splay into a messy 10-pointed star, both of which usually happen after 4-5 hours of driving with hourly breaks. So, there are some key neurological pieces that are definitely doing better.

Yay cerebral blood flow! Yay exercise!

It might be smart to take today off and stick to PT exercises and tai chi. No more bloody relapses. But boy, I sure am heartened!

Tuesday, April 16, 2013

Marathoning, murder, and masses

Who the hell would bomb a marathon? The shock and fury make my eyes hot and narrow.

Second thought: what a way to go – accomplishment, adrenaline, euphoria, and a quick blast.

Yesterday, ironically, I realized I was fully recovered from overdoing. That only took 11 days… I took careful walks around the park while recovering, so as not to lose much ground.
Leading myself along, and minding my posture.
Today I roughly doubled my walking distance and I'm back up to ~18 min. On a flat.

I'm grateful.

I grew up in Egypt, a Middle Eastern country. We were there in the relatively tranquil days of the late 1970s: Sadat was secure in power, a secularist who stood no nonsense and could be bought – excuse me, persuaded – into a peace treaty that ended several thousand years of war. (For the meantime.)

Islam was a thoughtful, neighborly religion. Guests were treated like the loveliest royalty. A blonde 13-year-old girl with a forward figure could (at least, did) walk the streets in daylight fearing nothing more than vile remarks and, in a crowd, a vile grope.

That was the key to life in a tourist country: avoid the crowds.
 
When terrorist attacks happened, and they were rare then, they happened in crowds. My family was constitutionally adventurous and put off by mob thinking, quite apart from the (really tiny) chance of bombs, so we just did what came naturally and took off on our own.
 
We saw crowds the way a sailor sees sandbars: a lot of work, and not much fun to get stuck with.

Moreover, I've always been an introvert in the Myers-Briggs sense, meaning that I recharge in solitude and that I find society in large doses simply exhausting.

Now, with CRPS, this distaste for crowds has become a deep aversion. The physical dynamic of being in crowds is unbearable: when people bump me unexpectedly, it's horrific; the noise overwhelms my sensory brain, which, let's face it, is overworked already; and, of course, my hotwired autonomic nervous system is ready with the fight or flight response... with nowhere to go that isn't in the crowd.
Breathe. Breathe. Breathe.

I was reading Angela N. Hunt's book about living while training for a first marathon, and her description of the starting crowd was appalling. For me, it would be like being inside a tiny electric fence, cattle jostling around against the outside, bashing and zapping me mindlessly and endlessly.

Not do-able. Not even think-able.

But that's just a problem, and problems are meant to be solved.

There are several possible solutions: invoke the ADA and start in my own class behind the crowd; rustle up about five good buddies -- preferably large, sturdy types -- to run around me for the first half, and be a better fence until the crowd thins enough;
run a different marathon course over open country, with only a handful of others; or abandon the whole thing.

I can hear some strenuous votes for the last option. In the wake of the Boston marathon bombing, I'll ignore them. Completely.

I will go on. If distance is not an insuperable barrier, then neither is willful fear. I'm a woman, weakened, disabled, and rather poor; I have enough to be afraid of. I don't let it stop me. Why should this? I'll wear the names of the dead, if it helps. I won't let it stop me.

I will go on. I'll find a way to avoid the crowds, in some creative and tasteful fashion.

I will go on.

"Watch me go."

Thursday, April 11, 2013

Slow reboot

Recovering from:
- the logistical hell of last week,
- seriously overdoing my training,
- and a phenomenally complicated iteration of the well-worn drive North...

Well, I arrived at my NoCal home at 9 Monday night, and am only just coherent enough to post.

I'm taking both the resting and activity seriously. This is the great juggling act of being a Type A (-ish) with CRPS: taking rest seriously without going too far into it, and taking activity seriously without getting too far into it.

"Pacing" is the term, but when it consists of sitting down for 20 minutes after a leisurely 15 minute walk, it's hard to give it such a dense-sounding word.

But I am learning.

Pardon the shouting up ahead. Sometimes it's the most apt way to express a thought. And with that said, let me be perfectly clear:

NO MORE OVERDOING. This desperately slow recovery is NOT BLOODY NORMAL and I can't afford many more like this. I'm NOT GOING TO LET CRPS OUTSMART ME.

Even though I can be reeeeeally thick at times.

Monday, April 8, 2013

Overdoing...the first time

My walking time in PT went from 5 min. to 10 min. when we decided to start training for the marathon. My walking at home took the 10 min. up to nearly 20 min., a third of that uphill.

That was nearly a mile. In a burst of what I thought was genius, on Friday I decided to walk down to town (0.8 miles), run a couple of errands, sit down on a sunny bench if need be, and walk back (0.8 miles, all gently but steadily uphill.)

Then, I thought bouyantly, I'd throw necessaries in the car and take off for my two week vacation.

Well, I got as far as making it back to the house. I knew, as I started back from town, that this had been a bad idea, and that there were three outstanding questions: would I have to find a place to sit down en route, exactly how hard would it hit me, and how long would it take to recover.

Saturday was a dead loss.

Sunday, I packed in small loads, resting for an hour or two between each trip to the car. No kidding: an hour or two. By Sunday around 4pm I was beginning to recoup a little. I left at 5.

I had forgotten what a mitochondrial shriek-fest felt like. An almost devastating feeling that my flesh turns to rot when I try to get up. I don't recommend it.

Mitochondria are the wonderful little hitchhikers that house our bodies' energy factories, in return for a warm place to live. They are most thickly concentrated in nerve cells and muscle cells. I knew all along that rebuilding my mitochondria was going to be perhaps the most essential part of training, but after my stellar success on the Hill, I thought I had more to draw on than that.

A delightful piece of training advice I got years ago was, "You can do all the cardiovascular you want." Perhaps that was true at the time, although I noticed I did better when training four days per week than five or six. Perhaps I should've remembered that last week.

I think I should've rested for a day after my Hill expedition, for one thing. More importantly, I should've had a backup plan on my "adventure", so I wasn't stuck with the hike back. And I probably shouldn't have done this around the excitement of going to see my sweetie.

My kitten just typed $. I have no idea…

Perhaps he's telling me that overdoing doesn't pay.

Wednesday, April 3, 2013

Unexpected adventures with the rent

Yesterday I did 10 minutes on the treadmill. Today, I walked almost a full mile of this hill in 18 minutes and 16 seconds -- no shuffling, no stopping, lots of striding, not much slowing down. Woo hoo!

I'd better start scouting trails and footpaths around here. I'm going to need more options soon.

As I calm my breathing in preparation for my autogenic exercise (more on that later), I have to admit that I had some angst to work off, and that probably had something to do with the pace I kept up.

Last night, I realized I'd lost my ATM card. I have one bank, one card, and one checkbook. ... Er... had...

The card was gone.

The checkbook was empty.
I'm fresh out of cash.
And rent is due.
Suuuuuuuuuucks.
Welcome to My Brain on CRPS!
To be completely apt, these should be thoroughly scrambled.
I went to the landlady's bank to see if we could do a wire transfer.
Turns out they're closed on Wednesday.

I called a different branch and asked if they could.
No, not without an account of my own.

I asked if I could open an account with a wire transfer.
After 20 minutes on hold, it turned out that I could only open an account with cash or a check.

Rather than repeating myself, I said, "You realize that does me no good."

I called my bank (a local savings bank) in Massachusetts. They were pleased to tell me that someone had called in my missing card and it had been cancelled promptly. 2 weeks to get another one.

They couldn't do a wire transfer because they're rather old-school, and I hadn't gone into a branch and filed the appropriate form in person.

But -- and this is why I stay with them -- they didn't end the conversation there.

After exploring several possibilities, which turned up as dead ends, I thought of Cougar, one of my angels (a word with specific meaning.) He bears a passing resemblance to a slimmer and semi-shaven Jerry Garcia..
A recent photo by yours truly.
But, more importantly, he takes my mail. Why?

In case you hadn't noticed, I move around a lot. (I'm looking for a place that has an affordable cost of living, good soil, first-rate medical care, and no extra pollution or radiation, and one day I'll find it.) I'm here in California for awhile for medical care, BUT, no matter where the rest of me goes, my mailing address remains the same.

The benefits are tremendous:
  • Not only is my steel-sieve brain spared the affliction of changing my address every time I move,
  • Not only are my ridiculous paws spared the trouble of wrestling with envelopes and handling papercuts (a task which cougar claws are apparently well-adapted for),
  • But my memory and cognition issues get a real break from having to deal with pieces of effing paper. I have developed a mental block around dealing with pieces of effing paper, so I get them into softcopy as soon as possible.
Or, rather, most of the time, Cougar does... Because he doesn't just take in my mail, he scans it in and sends me softcopy of anything I ask him to open. This means I have COMPLETE RECORDS of everything I need to keep track of.

He's the Magnificent Mail Mage, and I'm grateful. Take that, Pain-Brain!
He's my current Cash Carrier, now. The management staff at my lovely little bank have agreed to work with him as my designated agent, and will provide him with the cash I request -- which he will then send to me via Western Union, so I can take care of business here. And with it, I'll pay rent, open a bank account locally, and try not to let this happen ever, ever again.

Meanwhile, it's time to get my heart rate down from the clouds and that strangely full feeling out of my tissues. Easier said...

While the excitement is over for the moment, I have a vivid memory of the stress-tracking line on the biofeedback machine, and how bloody hard and bloody long it takes to get the level to drop after it goes up over something as small as one giggle.

This was no giggle. In fact, it was several hours of no giggle. None. A totally giggle-free period.

I found it stressful.

The walk helped. And I hope -- when I find some good forest trails to explore -- to spot some wildlife.
Meanwhile, I'm off the hook for laundry and shopping. It all has to wait until tomorrow. Bonus!

Everyone should have a little cougarosity in their lives...
 

Tuesday, April 2, 2013

Putting together the team

I saw  my counselor this morning and told her I was thinking of running the marathon. She waited for me to go on, then said, "Wait, you're not laughing. You're serious!"

I waved a hand generously and said, "Take a moment to have your reaction..."

It was priceless.

After talking it over a bit, she began to get behind it, rather  breathlessly but with real glee.

I saw my PT just now, for our first conversation since his rather cryptic reply to my email. He doubled my treadmill time (up to 10 minutes from 5), and said without preamble, in his cooly unflappable way, "That marathon idea of yours? It's going to be slow, it's going to be hard work, but I think we can do it. It's a good goal."

I nearly burst with relief and delight.

He set a 5-mile limit on my exercise over the coming 2 weeks of my vacation, then checked and said, "You're  going to come back and say, 'He-e-ey, I did 15!"

Finally... a PT I don't have to train.

Last, I saw my rheumatologist, who laughed in a pleased fashion and said, "I'm glad you've got a good PT for this. That makes my job a lot easier." Didn't turn a hair.

I'm seeing my primary care doc and my pain doc on Thursday.  As for data (I am a geek; gotta have data!) I have current baseline levels for all basic chemistries, immune globulins, and a complete blood count, plus vitamin C and D. I have cortisol reports from when I was in adrenal exhaustion.

I'd like a baseline cortisol test now, and talk over what other stress/adaptation/compensation markers we could be tracking and how often.

I might have to shop around to different labs to keep in budget, if insurance can't be persuaded to cover the lab-based data collection, or if I can't get it covered some other way.

I'm dead serious about not hurting myself. I'm also dead serious about going for this. In any case,  we might as well collect data, so if nothing else, we'll have one damn good case study to publish.

See you on the trails.

Monday, April 1, 2013

Marathon -- second thoughts

I've gotten some interesting responses to my marathon proposal, some of them very worried, bless their excellent, loving hearts. I feel I owe some explanation.

My tiny handful of fellow "imps of the possible" are all for it, completely understanding the uncertainties and sidetracks and possible (even probable) different endings in store – and knowing that it's the reach that's important, that spreading your wings impossibly wide will take you much further, and possibly in wholly different directions, than you've ever been before.

This current gimp/former middle-distance runner read about a marathon and that's what put the fire back in my belly. I'm supposed to have a fire in my belly; I was born that way. My mother, bless her sweet cotton socks, has come to see me clearly enough that she cheered me on without a second thought.

I'm not wedded to the idea of a marathon next March, but I am absolutely devoted to finding a goal about that large.

Why?

Because it works for me.

Why?? Well, I'll explain...

I took an excellent management course at UC Berkeley in which we learned about a dozen different ways to slice the personality cake. I know my Myers-Briggs, still shake my head at the fear-based pissiness of the Enneagram, and could eventually bring to mind roughly 10 other forms of alphanumeric soup which social scientists have evolved to try to describe humanity.

Prepare to be shocked...

It turns out that I'm a very odd duck.

Here's why:
- Linear planning (logical, methodical, with predictable stages and moderate goals) will net me mediocre results at best! To make any real progress, I have to make seemingly serendipitous leaps, which make internal sense to me but tend to scare the pants off most.
People like this are a single-digit percentile of the population, but we do exist in measurable numbers.

- I'm an introvert in a world of extroverts.
Only 20% of humans are basically introverts.

- My intuition really is that good.
Social scientists will only smile nervously when asked for figures about that, but the teacher was elated when this showed up consistently on my evaluations.

Thanks to CRPS, I live in a situation which would defeat normal people. Because of the way death statistics are collected, there's no saying how many people with chronic CRPS affecting multiple limbs, associated with dysautonomia and other comorbidities, survive as long as I have, but the numbers can't be that good. We are, by definition, exceptional.

- Therefore, I have to do better than average, so linear planning is not my success path.

- I don't have the energy to be a public figure, because that much attention would suck me dry.

- I can't always explain why something has to happen or why I really need to do what I choose to do, but after 47 years – 10 of them skirting hell – I'm pretty clear that, when the inner voice speaks, the only rational thing to do is to listen.

All right, time to bring this back to earth, back to the here and now...

I've been trying for years to get my body and brain back. Quite apart from the merry-go-round of care providers and pharmaceuticals, and the endless work and study to find one single conventional or alternative treatment that makes the least bit of difference and adding it to the pile... I've been doing a lot of low-tech stuff too.

Using other languages helps build sturdiness and resilience into my brain. Traveling keeps me from becoming too attached to a routine, so that I can stay flexible and resilient in my habits. I've seen too many of my compatriots become prisoners of their habits, because the stress of making a change is more than their systems can accommodate. If I were like that, I couldn't have made the massive dietary and lifestyle changes that have allowed me to continue to think, write, move, work, live...

- Stasis is not an option.
- Movement is mandatory.
- Everything I do is calculated for its net benefit.

I've been trying, in methodical, predictable, linear ways, to improve my situation. And, as my Dad once said, after my very first driving lesson that nearly ended in disaster, "If what you're doing doesn't work, try something different."

I've gone, if not to the ends of the earth, at least to the ends of the state, in search of good care.

After wading through the quagmire of paperwork associated with this case, I caught up with all the people who anchor me, covering the entire country twice -- once, an hour at a time, in a car.

And that's the secret. I figured out how to drive long-distance by saying, "Dammit, I'm going across, and  I'm taking my f%^(*#g car with me." I worked out the main things I'd need beforehand, got them in place, and figured out the rest as I went.

I still can't drive more than an hour at a time, but guess what? I can get back into the car after I've done some self-care stuff. And then drive another hour! Stitch enough of those together, and yes, it IS possible to get all the way across this continent. It just takes longer. That's life...

It occurs to me that I've been working so hard on my brain and digestion and mitochondria, that I've given the rest of my body the shaft. No wonder I'm large and lumpy -- which makes my feet more sensitive and my joints weaker. It's also not good for my brain, as I remembered today. Nothing beats good cardiovascular health for flushing the garbage out of the brain and bringing sustenance in.

Inactivity runs against my lifelong experience. It makes me furious with myself for overlooking it for so long. I've always been at my best when I've been very active. I loved hiking, running, weightlifting, climbing trees or rocks, snorkeling, riding whatever moved faster than I did -- anything, at the risk of purple prose, that meant moving with vigor and attention through this gorgeous world. (I wasn't that fast, only fast enough to please myself. I just loved doing it.)

Excellent health came with lots of activity. I couldn't reach one without the other.

And here I've been nursing myself by tiny stages, dropping at each burst of weariness,  afraid to do otherwise because of the horrible experience of adrenal exhaustion and the months that I hovered on the brink of extinction because of it.

My clever PT and my wise psychologist and my lovely counselor and my wonderful physicians are showing me how to assess my real physical state with ever closer detail, ever more precision. For instance, did you know there's a different feeling between a muscle that's tired because it was pleasantly worked, and a muscle that's tired because the mitochondria are gasping? It's true. It's a different feeling, and now I know what that difference is.

And I've only just begun this course of treatment.

I am SO looking forward, not only to being tuned in to this body, but to enjoying the experience again.

Months, years of care focused on just moving along in logical increments have left me too fat, weak and sore to tolerate the continuance of this state. Two days of a goal that's beyond the moon, and I'm already measurably stronger.

I think my intuition really is that good!

The only thing that has given me pause on the marathon idea is, the cortisol rise. (That's a key adrenal hormone and one that takes a beating with CRPS, so it's of special interest to me.) Of course, these studies were small, one needs more cortisol when running (it's the "gear-up" hormone) and these cortisol levels were taken on people who were healthy to start. There's simply no assuming that my cortisol will behave the same way. Too little is known about this disease.

I bet dollars to donuts, though, that running a lot more than I do now will stabilize that cortisol like nothing else ever has.

Personally, I'm not inclined to give the marathon a final thumbs-up or thumbs-down before I've gotten quite a few miles under my running shoes, and quite a few galvanic responses and other tests into my binder. I'm still collecting data. And probably cortisol levels.

It's important not to go off half-cocked. Right?

Until further notice, I'll keep the March marathon as a "working hypothesis", and collect data as I work to "prove" it. Whether I prove that hypothesis or not, I'll most definitely prove something more interesting than what I've got now.

And, if the past couple of days are anything to go by, I'll certainly get a whale of a lot further along in restoring my body to my soul.

Who knows? One of these days, I might just cross that finish line.
 
The only failure is not to try.

Making progress

Yesterday was my first workout: walking 0.8 miles around the block. I live on the side of a pretty steep hill, so that's not completely trivial.

On the steepest part, I wanted to stop, but my old athletic training kicked in: do anything *but* stop, because it's worth it to get the hill behind you. So I moved forward less than one foot-length at a time, giving the sick feeling in my chest enough ease to pass. (At least I know it's not a heart attack. One of the wonders of chronic CRPS is, your physical experience of life has changed so much that words don't exist to explain it. But I know for sure it wasn't a heart attack.)

Today was my second: the same distance, but noticeably better – on the steepest part, I could maintain something close to a walk, and I never got that sick feeling in my chest.

Wonderful progress!

Today was also my first lesson in biofeedback. I thought I was hot stuff, because I can knock 10 to 12 points off my blood pressure at will. Today, though, we measured galvanic skin response. It's much more subtle, and a lot harder to finesse. I got compelling evidence that the physiologic back pressure of this disease is pretty much as bad as I've ever said it was. I won't go into that, because it's depressing.

I've been thinking about a blog entry on breathing, the simplest and most profound of our daily actions. I have to absorb today's lessons first… I really see why I haven't been able to put it together yet, even though it's been on my mind for weeks. Breathing, like living, is so fundamentally simple that I have to think it through very carefully before I try to put it to words.

Saturday, March 30, 2013

Letter to my PT - how about a marathon?

Dear [PT],
Something crystalized in my mind, after reading the preface to a friend's book. (On Kindle here.)


I  do well with having rather demanding overarching goals. (Trauma nurse at DC General, software geek at Borland? yeah :)...) I have some good mental and creative goals (books on mythology and CRPS neuro-endocrine-immunology, 501c3 called "CRPS: Art and Spirit", etc.), but my physical goals are reactive rather than proactive


Right now, it's all about beating back the assaults on my function; there's none of that necessary "F.U.!"-sized stuff on my horizon that can help me bring enough focus and determination to vault over such paltry issues as washing my damn hair. (One side of my face laughs wryly as I say that.)


There's the shorter CRPS walk/roll/run in December, Quench the Fire!, and that's a good, reasonable goal.


I need a slightly unreasonable goal, or I can't really focus. Normal goals really do bore me. Sad, possibly warped, but true. 

And this reactive mindset is doing me no good at all -- look at my last stallout. Awful. 


It's just awful to be reactive in my goals, and especially in the goals for my horribly challenged physical self -- my only vehicle of life. 


I have to do better. 


I need something more -- something a bit larger than life to strive for. (Just ask my mother. I've been like this since I was at least 2.)
So... I'm considering running next year's marathon.
Positives:

+ I have a year to pull myself together. If you could help hook me up with some kind of structure for training, so much the better.
+ Keck staffs the medical tents, which I find automatically reassuring.
+ It's slightly crazy, but not completely insane. Perfect.
Negatives:

- Mostly pavement. A real problem. (I don't have to train on pavement, though.)
- Potentially difficult, risky and expensive. ...Just like life.
- Ummm...


I think the Ayes have it. What do you think? And, if I'm in town, I'd be delighted to do the 5/10k at the end of this year. Not as a goal, but as a coincidental benefit.
It's all about pacing.
I realize we've only just met, and this might strike you as brash or ill-considered. I'm not saying it isn't, but it's very much in character and, with a little bit of faith from those backing me, could be just the mental kick to help with quite a few intermediate hurdles.


And, of course, I might finish.


(With a little publicity, this could be pretty cool all around. Fat, brittle, middle-aged, chronic CRPSer turns marathoner. -- Huh, that gets MY attention! And how cool if I was not the only one....)
I used to be a middle-distance runner, going 4 miles up and down a canyon or 6-10 over surface streets, 2-5 days a week. I kept getting back to it, pre-injury; I enjoyed it, and looked for places to live where it was safe to run.


Marathoning is a different mindset, but I think it's learnable. And learning to do a marathon in a paced, calm, controlled, ANS-managed, non-frantic manner... well, that's one hell of an F.U. to CRPS!



I look forward to hearing what you think about this... I think :) I really do want your advice and would love to be able to check in with you as I go, so please mull it over. I'm seeing my whole team next week, so I'll get to do plenty of hashing-out. I'll blog it and talk it over with some of my old guard this weekend, too, so I'll be better prepared for our conversations.


Many thanks,
Isabel

--
Writing on science, adaptation, surviving, and running...
* Health and Life with CRPS-1: http://livinganyway.blogspot.com/
* Cauterizing the Bleeding Edge of medicine and science: http://biowizardry.blogspot.com

Back in the saddle again

The grip of the last round of the Yucks started to break right after posting my last. I hate it when I have to go that far to get past a bad spot, but hey, I'll do whatever it takes to keep heading in the right direction.

Dignity is optional. Progress is not. Words I live by.

My new kitten has changed apparent gender twice, and is back to being a boy kitty -- not that it matters in any practical way. I was looking for a name as elegant, good-natured and playful as he/she/it, while treating an upper respiratory infection that made that left eye look like a mouse:
My cat's mouse
But then, with returning health and strength, his natural energy and violence reasserted itself. He has exactly two gears:
1. Unconscious (or nearly so)
2. Full-tilt, greedy, grasping, and spikily impulsive (as the scratch-marks around my blinked eyelashes attest)

So I've named him Siddhartha, in the hope that something will rub off.
Siddhi playing hide-n-seek.
("Siddi" is an Arabic address used towards a respectable gentleman.
Another fine malapropism from the chronically punny.)
All of his front nails are trimmed now...
In health care, we call this "desensitization"
As for my own care, I'm up to 2/3 of my reiki time and 2/3 of my basic qi gong routine, and hope to get some t'ai chi in today as well. This is tremendous progress.

Vegetables are once again a chief component of my diet, thanks in no small part to an enormous bag of frozen "Normandy style" blend from Costco and our local dollar store, which sells cheap organic produce out of cardboard boxes.

I actually did laundry yesterday.  Today, I hope to take a shower and -- gasp -- wash my hair!
 
I realize only a minority of you will find that truly inspiring, but the rest can have a good laugh... and then think for a minute :-)

For me, life with CRPS is indeed a matter of tiny triumphs and great goals. For the record, I'm still bound and determined to advance the search for a cure, and yes, I've gotten slightly more concrete in my ideas about that... More to come in time.

And now, just for the deliciously hokey yodeling at the end...

Links list:
Here is a recap and explication of the links used in this post:

Monday, March 25, 2013

Frustration at the wall

I've had my nose shoved up against a wall for two and a half weeks now. It's very frustrating but it's the nature of this disease that, at times, I'm going to get stopped in my tracks, and I may not always understand why.
I have had less energy than I do now, but I have never had less motivation. Me? Unable to start something? This is so out of character that it's a bit like seeing Mother Teresa bite a kitten -- unfathomable.

Speaking of eating, I've been craving sugar so intensely I have truly felt like I'd lose my mind if I didn't eat sweets. I haven't had serious sugar cravings for almost a decade. That was one problem I never ever thought I'd be dealing with again. That's finally lightening up, thank goodness -- and thanks to some mental judo and nutritional first-aid. I can't take on any more weight or the pain in my feet will become unbearable, and my hips are already giving me hell.

I have great blog ideas, but getting them into words isn't happening. No... words... come... together. This is so strange I don't even need to elaborate. This is the first thing I've been able to write in weeks and it's not a blog, it's a tirade. Excuse me while I scream.

My muscles across my shoulders and upper back are so tightly knotted I can't do my exercises or qi gong or even more than a stroke or two of tai chi without that weird warping sensation when the muscles pull my moves awry -- and then the nerves pull back and howl. Some activity would be better than none, but low as that bar is, I just can't make it over.

I got a break from my muscles last night when I loaded up on Flexeril (if you follow this blog, you know it's almost unheard-of for me to hit the CNS-affecting meds) but the lethargy, brain fog and stupidity this caused, for 18 hours afterwards, is hideously limiting in itself.

After trying to do my most basic stretches just now, I took another dose. I will NOT let this twisty locked-up posture become the new normal.

And somehow, nevertheless, I will function tomorrow enough to get my pills and get my gear and get my food for the day and get my sorry ass over to OT and PT and hope something can break through this maddeningly comprehensive barricade.

Needless to say, this is not my usual pleasant, mindful, lemons-into-lemonade sort of post.
This is me grabbing the damn lemons and throwing them right back, hoping to hear a few screams as they connect. 

In the fullness of time, I expect I'll be able to  find a trigger, or a clue, as to what exactly started this and how to avoid it in future.  I can't see it from here, and maybe this is the start of what I dread most: The Slide, the final descent into irresistible helplessness and incompetence.

But I think not. I'm too damn angry to give it that much room.

Let's see what happens next. My money's on the chunky blonde with the harsh mouth and crappy attitude. 
... And the new kitten...