Skip to main content

Don't Burk Me

Had a great day, finding a new venue for usefulness. I wish I could tell you but then I'd have to kill you.

Unfortunately, upon my return from an outing, I needed care. I was apprehensive since there wasn't any Tina-experienced staff available. (This was my first venture back in my wheelchair since my spine was so injured about a week ago.) I had to settle for caregivers who, historically, don't understand my speech nor "get" my care. One PCT and one RN who ended up hurting me... Again.

Given no other choice, I needed to get out of wet pants and grab a nap before our monthly ALSA support group meeting. I felt I had to trust in the system and the process and give these caregivers a chance. (Famous last thought.)

Same issues, different caregivers, another day. Things went bad immediately. I could not even believe it. What do I have to do? Die?  They fumbled my head control on my wheelchair, then took my hands from the armrests. I implored them to hold up my arms. They were clueless about supporting my arms so I could breathe!! And once more, they failed miserably at communicating with me (the patient). Once more, they failed to realize the key issue, breathing.

Once more, I was forced to act to save myself. I scooted my butt down to try to keep air going both ways. (Marginally effective and excruciatingly painful on my already-traumatized coccyx {tailbone} and lumbar spine.)  Enter, two more registered nurses who ascertained the breathing issue but failed to do the obvious, (lift my arms).

They did manage to get me into the transfer sling. Another issue: the original PCT and RN persisted in holding my arms to my stomach while I was in the sling despite my demands not to touch me. This action taxes my breathing! The weight of them pushing my hands/arms to my stomach is a wonderful way to suffocate me. I think the term is "Burking".

Is it any wonder that I curse those who insist on "helping" me? Fight or flight mode isn't pretty. By the way, I'm going to be more particular than ever with regard to who I allow to touch me. I'm not willing to let incompetence kill me. Bring your A-game, read your email, pay attention in huddle, and allow me to enjoy my remaining life.

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!