Skip to main content

Grand Delusions

I may pass sooner than later. I'm having terrible spasms throughout my organs and around my heart. I wake up with my whole body quivering. Much to my dismay, nobody seems to notice. 
Fasciculations herald the death of the muscles, in my personal observations. Therefore, I figure I will likely die suddenly from a catastrophic organ failure.
I know I'm paralyzed but I'm unnerved when my body seizes. I gasp for air almost every time I'm changed, as I'm being lowered, my body stretches, then my diaphragm spasms big time.  Though I'm gasping, caregivers continue to lower my body to proceed with changing, without realizing it, they are increasing pressure on the chest, with the weight of gravity. Instead, it makes more sense to raise the head of the bed, to reduce pressure on the chest, then pause until the spasm (gasping) passes.
This was my state of mind yesterday evening.  Luckily, I got out of my head and shared with my husband and one of my favorite, and most trusted nurses.Apparently, I am more likely to pass from respiratory failure. Oh yeah!  I forgot. Interesting to note that I am still able to make shit up, believe it, and run with it! By the way, the part about raising my head up when I'm gasping is true.

Comments

Popular posts from this blog

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.

Immersion Therapy

Please excuse my selfish absence from posting to my blog. I wish I could say that I've been out diligently finding a cure for ALS, or tirelessly working to fund research, or hunger-striking to bring public attention to beacon the cruelty of not having access to care facilities geared specifically to the specialized needs of the ALS patient. Alas, I have been binge-watching Scandel, The 100, and binge-listening to audiobooks. I'm currently enamored of mystery and thrillers by Chelsea Cain and Lisa Unger. I cannot do a Helluva lot these days but I can still waste time. ALS ought to have some perks. I can immerse myself in completely in entirely new situations, raise my excitement level and learn something new to me.

Tuesday

Tuesday is shaping up to be my best day of the week. Every day holds the requisite eating, changing, television, and napping. But Tuesday, I got a glorious, hot bath in a handicap-accessible bathtub with my Angela and Lisa, reorganized my shower caddy with my Lisa, read "The White Album" by Joan Didion with my Lindsey, "supervised" doughnut-making and sampled same with my Sandra among others, and listened to Ryan Feng play classical piano. A new book fell into my lap today. Of course, I mean that figuratively. "Play It As It Lays" by Joan Didion was just laying on top of the informal Bailey Boushay House library cart, so I borrowed it. .Guess what we'll be reading? I feel very blessed!