Posts Tagged ‘ heat intolerance ’

Musical Medical Chairs (+GRATITUDE ADJUSTMENT)

This is still a big problem.

This is still a big problem.

Because my neurologist’s office makes a big point about not switching doctors within the practice, I’ve just been needlessly detained for weeks while they keep losing paperwork sent by my neuropsychiatrist that details why I need to switch physicians. I don’t know what other practices are in the area, but it’s time to check. I need to sit and write a complete history of my time under the care of this physician. I lost a year of my life and gained “many new” brain lesions under his lack of care; he made “using a wheelchair” gestures to chastise me… for not receiving care that his practice withheld. Most recently, I made the choice to not go through the Gilenya all-day First Dose Study because, after having gone a year without treatment, I was still not receiving a time or place to do it. I just started taking them on my own and, good news!, nothing bad happened. I have been my own physician for longer than any layperson should, and many of the physicians I have trusted with my care have fallen farther than short.

Don’t get me wrong — The Wahls Protocol is still remarkable, and the changes are still epic in my book. A warm day this week, however, was a polite tap on the shoulder from my nervous system after which it took an entire evening to recover. A sudden loss of motor skills and cognitive slowing almost seemed foreign (almost). Summer reminds me that it is no chump and can still best me.

But end of rope reached (before anything really bad happens!? Go on, girl!) and I need to look into finding physicians.

In the meantime, there’s laundry to fold, dinner to make, and a house to clean. Maybe before I even do those things, I need a full-on GRATITUDE ADJUSTMENT:

I am grateful that my health is, in many ways, better than it’s ever been.

I am grateful that I feel like I can have a productive day.

Back center in the red wig: I was going to marry that musician.

Back center in the red wig: I was going to marry that musician.

I am grateful for my incredibly talented wife; I get to be privy to her private home rehearsals as she gets progressively more amazing as The Witch in a stage version of Sondheim’s Into the Woods. (I fell in love with her after the first time I saw her on stage several years ago. But I didn’t say anything to her then because she just looked… so above me, y’know? Without costume, I didn’t realize the waitress I seemed to hit it off with was the same siren that left my knees weak months earlier.)

I am grateful for kale chips.

I am grateful for a fridge full of produce.

I am grateful, now that summer is here, for Sheex®  on the bed.

I am grateful that my mom is recovering from her second knee replacement, and even more grateful that my dad is there as caretaker/cook/landscaper/houseboy. 🙂

I am grateful that #MindsOnMain wass successful enough to become an annual event!

I am grateful to have had the time to begin creating book covers!

11020769_10206485101228382_3872190026647930666_nI am grateful for great new housecleaning music

I am grateful for Cowboy, despite his new aged persona named “Lord Grumblebark” who appears only when Cat has been out of the house too long (after-work rehearsals) to release a litany of arbitrarily-timed woofs from the very pillow on which she will hopefully soon again lay her head.


Hypotheticals Without Hypochondria

This is a scene from my dad's train layout that he's titled "Family Gathering." Thankfully, our family gathering this weekend required no police cars.

This is a scene from my dad’s train layout that he’s titled “Family Gathering.” Thankfully, our real life family gathering this weekend required no police cars.

Yesterday was a long, but good one — meaning perhaps that though I did wake up late (10:45am is now “late,” unbelieving college self), I did so clear-headed and happy. I got a lot done before scaling towards the plateau on which I currently rest in patient quietude. When it passes, I’ll have done a lot of laundry, there’ll be 7 cups of fresh kale washed and frozen in individual smoothie portion, and a lot of things will be cleaner in the kitchen. Today I began adding small changes to my routinized dish-washing process to keep my hands from being under hot, running water for over 5 minutes.

Dishes need to be washed in hot water to be clean. I have believed that starting somewhere in the deepest recesses of my childhood memories, and I feel like science can plainly back me up here re: food viscosity in relationship to temperature. The trick this morning was to get dishes clean using soapy, hot water but to do so without brandishing a metaphorical starting pistol for my great kaleidoscope races.*

Now heat intolerance is a real easy foe to dispel, either through combative cooling or complete avoidance. Something I can’t sidestep during the day is changing direction. The sink is on the wall opposite the stove, to the left of the trash can, to the right of the fridge and anything else I’d need to do is not on the sink side of the room. To achieve shorter time under the water without having to face adding more turns to my kitchen repertoire (just to, say, space out moments of self-heating-via-faucet between other kitchen tasks) I settled on a cold rinse and scrub before a final hot rinse.

37044736 It’s not as if I no longer possess the physiological capability to turn my body, it’s that changing more than one direction at a time gives my body a spectrum of pause aligned in severity with any increasingly circular journey.

When sitting I can still easily turn my head from side to side in gentle conversation; if I do it while walking, I risk throwing the “on” switch that lives in my [brain/inner ear]. Going up and down grocery store aisles, for example, requires two direction changes at each’s end that results in one long circle after another. If I go up and down each aisle of a grocery store with 10 aisles, I will have changed direction at least 20 times by the time I make that always-gotta-have-the-last-word turn into a register line.

It is why I am often too dizzy to properly handle myself at cash registers. I’m that young lady ahead of you who’s got to be drunk because she’s dropped three cart items and had to run her card twice before payment went through.

It’s four turns to the toilet from my bed, resulting in anywhere from 12-40 turns during the time my body should be staying prostrate for a while in recovery from a day of engaging a minimum of three directions of space. Any bathroom anywhere requires you to turn round to sit; I use the bathroom around 30x day. That, friends, is a pun-intended real pisser.

The poetic irony here isn’t lost on me — I’m trying to look figuratively at all sides of a given problem, and said problem is my own inability to physically negotiate the facets of each literal side toward which I turn.

SILVER LINING: Grocery shopping, dishes done. Time to have a seat.



*I will spend the rest of my life trying to find succinct turns of phrase that adequately communicate how my bad moments feel.