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.

A New Direction

Some interesting results, to me at least from various medical tests. The DaT scan showed my dopamine receptors are functioning normally in the brain, and that I might have a Parkinson’s related syndrome but not actual Parkinson’s. Then my cardiologist called about the kidney function ultrasound I had not long ago, and that was normal, but he had also asked for some chemical panels and said that some numbers are really strange and probably indicate an adrenal gland issue. So maybe an answer will come along eventually, of course it means a referral to another out of the area specialist, my ologist list expands again. Endocrinologist this time.

since I don’t yet know which chemicals and hormones were looking unusual, I couldn’t doa deep dive in research, but the following link at least let me know several options.

https://www.nichd.nih.gov/health/topics/adrenalgland/conditioninfo/symptoms

Some symptoms make sense

Some of them for sure, including one I’d forgotten about by now, the reason we adopted was because I never had periods from age 20 to 30. My Mom, my grandma and several cousins all had the similar symptoms. We joke that infertility runs in the family.

And I had serious bouts of abdominal pain and could never pin point if kidney or ovary so several ultra sounds since 2004 looking for cysts or tumors in that area,

and I wondered, I’d there a possible connection between the Adrenal glands and maybe Parkinson’s symptoms that are induced, not by Dopamine shortage but by something Adrenal? Googling Parkinson’s / Adrenal got me only one hit, but yeah, it’s a possibility.

https://pubmed.ncbi.nlm.nih.gov/7697198/

with that, I have to still admit I don’t know why my abdomen tightens as if anticipating punches, every time I move or get touched. Why my face twists and then freezes if I’m focused on anything else. Why I suddenly start shivering uncontrollably and drop anything, and lose awareness of the real world as my ears fill with the roaring of shattering glass.

i don’t know, but at least I do have a new direction to investigate.

Springing Forward

I am not a fan of the spring time change. I could gladly fall backwards every weekend. I’m also a 57-year-old woman whose health has been falling backwards since about 2004.

Some people have been asking why I don’t write very much anymore. The truth is I don’t even read very much anymore and I’m someone who has always had at least four books in various stages of progress since I learn to read at age 3.

Pain has become my constant companion, replacing both books and keyboard. I use social media to distract from the pain by reading and re-sharing and admiring other peoples posts.

But what is wrong with me? That is the million dollar question. At first I thought it was normal aging. Until friends who are nearly a decade older than me started offering to help me up from a chair or slowing down to match my footsteps.

Then I finally went to the doctor and began the long process of testing and narrowing the options. I thought the options were narrowing, anyway. Until my rheumatologist told me “well, just because the biopsy of your cheek says rosacea instead of lupus, it doesn’t mean you don’t have lupus.” The most frustrating thing about waiting to see another specialist and then answering all the same questions for them in their paperwork and then having them not have read the paperwork and ask you all the same questions in person, is to have them look at you, shrug and say, “come back in six months and we will see how much your health has deteriorated and that’ll give us a clue.”

So often I have found myself repeating mantras of death and despair. “I can’t do this anymore.” “I hate being this person!” “Just kill me already!”

And just like I tell myself I hate the spring time change, I convince myself that my life is over and that the pain and stiffness and shaking that I endure every day is probably the best I’m ever going to feel again.

I’m done with these thoughts, so I have decided that I’m not letting myself be done with living but rather I’m done with being an invalidated invalid. I’m going to keep searching for answers and I’m going to write here about what the struggle has been like and where it goes next.

As Dory says. I’m going to “just keep swimming.”