Skip to main content

Lousy Wit It

Flop goes my head, muscles have given up the ghost in the left side of my neck. Another day in the life of the ALS patient. I'm not sniveling so much as documenting for posterity.

Losing my neck muscles is problematic in the sense that it's difficult for caregivers to place my head properly.  Additionally, caregivers operate on old information; they don't really get the progressive nature of my disease. Consequently, my head doesn't get properly supported.

I'm struggling with my toes curling as my tendons contract, my muscles have died. It was so much better when my husband curled my toes!

I may have to resort to wearing glamorous moon boots lined in genuine simulated sheepskin.  I spend 99% of my time lying or laying in bed. As a result, the skin at my heels is getting sensitive to pressure and my left knee and thigh are in near constant spasm. Both conditions are painful.

It's winter in the Pacific Northwest of the United States, with winter comes dry humidity. And I'm suffering the effects. I have the dryest skin of my life and a bad case of eldersnow. What is eldersnow? I dare say you can figure it out. With it, I have a worsening scalp issue, itching and burning to the point that I suspected lice. I'm delighted to report that I don't have that condition. And I have a brand new prescription for dandruff shampoo. Woo-hoo!
Labels:
Location: 2720 E Madison St, Seattle, WA 98112, USA

Comments

Post a Comment

Popular posts from this blog

I Remember...

I remember catching fireflies,  putting them in a jar, as a girl of five. I picked pears off a tree that overhung an alleyway on my route home from school, then enjoyed the forbidden fruit. .I had a golden cat who chased a gray mouse through our living room sending my mother, 3-year old sister, and me screaming atop the sofa and chairs. We lived in a farmhouse and I watched Romper Room. A daddy longlegs skittered across my dirty kid legs as I teeter-tottered on a broken kitchen chair back. I played grocery store and laid out a bedroll for group nap time in preschool. We lived in an apartment attached to a bakery. My maternal grandparents visited and a photo was snapped. Grandma held Dawn and Grandpa held me. I held Grandpa's chin. Walking through the back of the flour-caked kitchen, I saw scrumptious pastries and colorful toys stuck in the cupcakes with my hungry kids eyes. We lived in a two-story apartment building next door to a large farmer's field.  That field was my...
3 comments
Read more

You're Not You...Me, Too!

1 Wow! Spot on...In so many ways.  Granted I wasn't in the the same socio-economic circumstance, and neither do I play piano but I was passionate about knitting and I lost the ability to engage in my passion practically from the onset of the ALS. Symptoms first manifested in my right hand as well. I was big on juicing, supplements, and did not worry about fats nor calories. But ALS advanced relentlessly. I hired friends as caregivers and had to bear the humiliation of being toileted by them.One of the worst hurdles for me was allowing a long time male friend wipe me following a toilet. My mother, stepfather, and sister all toileted me as well. Of course, my husband had to attend to all of my most delicate needs, showering, dressing and make-up application. I could really relate to Hillary Swank's character, Kate, in all circumstances except, she chose not to use the bipap (breathing apparatus).  I don't really get why somebody would opt out of a non-invasive solution to...
3 comments
Read more

Kate

I think about my friend, Kate Struby, who died from this horrible disease in 2013. She lived here at Bailey Boushay House before I did. I reached out to Kate online through FaceBook because I loved her photograph with her head thrown back in laughter. I also loved her posts. I guess I just loved her spirit. I got to finally meet her one month before she died. I happened to be at the University of Washington Medical Center for my quarterly appointment when I saw her FaceBook post. She was awake and in the medical ICU. She was a mere few floors down. I would not be stopped. Relativeor no, I would meet my FaceBook friend. Thank God I did. I rolled into the room to find a beautiful, ethere.al woman flanked by two friends. Although it was an impromtu visit, she said she knew me immediately.I was in awe of her with her fiery spirit despite the ravages of our shared disease. She, unable to lift even a finger, lifted my spirit.
2 comments
Read more