Day to Day

I think I have Parkinson’s or one of the near Parkinsonian type motion issues. A DaT scan on March 10, up in Portland however showed near normal dopamine. Over the years I’ve been tested for lupus, and RA and both are still possible. I have high blood pressure but after a year experimenting with diet and meds it stays the same so a recent kidney function ultra sound and lab tests show some adrenal gland hormones and chemicals are off, so now I see an endocrinologist.

When I decided to try to face my fading glory, and figure out the mysterious ailment slowing me down and robbing me of one ability after another, I was about 17 years younger, and teaching kindergarten in a private school. Feeling my legs stiffening and getting resistant to getting up off the floor was one of the earliest symptoms and I tried to fight it by using them more, going up and down stairs many times a day, parking further from every place I was going and walking. Standing and sitting 10 times every time I was alone all day long. Sometimes getting knocked off my feet by a three day bout of abdominal pain led to an abdominal ultra sound looking for kidney stones or ovarian cysts. I had already had my gallbladder and appendix removed and an emergency c-section. So the idea of adhesive scar tissue was not impossible in the patchwork quilt I called my abdomen.

I planned on writing more about the history of the mystery today, but the truth is, maybe

I should start where I am. So in brief (no I never really am! Dad swore my first vaccination was with a record needle.)

I will talk about this recent time period and what days are like for me.

I am awake to get the granddaughter ready for zoom school, but I couldn’t sit down until she was on or I’d be no good o anyone, dead to the world, so I washed dishes until she started. Now I am sitting here with my head buzzing, knowing that if I sit somewhere comfortable that soon I will be solidly asleep, almost comatose in my oblivion, unmoving until I wake slowly, my ears turning on before I can open my eyes or twitch a finger. I will listen to the world around me, try to judge how long I’ve been out and remember where I am, I’ll become aware if I’ve been drooling or if my nose has bled. Neither uncommon. Possibly even pee’d myself so I wear absorbent washable underwear Then I’ll wrench my eyes open with a mental effort that feels almost impossible. My hands will be on my stomach, fingers locked together and I’ll twitch one at first before finally regaining the ability to turn my neck and open and close my hands. When it is a span of time later and I know I need to move, I have to prepare mentally for the anguish to come. On a scale of 1-10 (with a ten being the time I was dying of peritonitis, body shutting down and ejecting fluids from every orifice) getting to my feet will be a nine, and it will have to happen so many times a day, with me mumbling under my breath all the while “help me, I can’t. Oooowe!” But I do. Without that granddaughter needing me, I’m not sure I could keep getting up.

First, with the thought of moving, my body twitches, a slight tremor that builds into a contraction, my abdomen tightening like I expect to be punched and then beyond that, my lower back and legs join in and the contraction seizing all the muscles on its way down to my big toe, past the right knee that feels torn apart, curling my toes upward and back, making my right big toe jolt with pain as my left hand starts burning deep in an old scar.

Anything I fell asleep holding hits the floor, the coffee mug, the iPad, a book. My hands vibrate numbly. The rigidity eases with a shudder and a loud roaring fills my ears like a store of glassware breaking at once. I can’t hear anything, and when it fades and I blink, anyone around is staring, my granddaughter asked once why I was shivering, my husband said I definitely have tremors and the ultra sound tech recently looked like she was one breath away from calling a code team.
I hoist myself to my feet and stand tipping forward at the waist, frozen in place until I straighten a bit more, rotate my feet slighly to realign my hips and take a few toddling tiny steps. Each upright moment makes my face grimace and the muscles in my lower back writhe like snakes under the skin.

yet if I get it together enough to get dressed (by lassoing one foot with panties and pulling it up near enough to pull on sock, pant leg and shoe) then drive to physical therapy or a dr. Appointment, by the time I arrive and they see me, I am moving better, smoothly enough that they wonder why I am there. The PT asking me to do 10 squats and I hold a bar, but drop down and back up, 12 times, smoothly. If my mouth twists and freezes it is under a mask.

They have no answers and never even see the real questions. Rarely do the have time to hear the full details of course.