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A Matter of Life and Breath

123I was determined to write a blogpost of praise for a change. Then, before I could open my browser and get Blogger loaded, my airway constricted and I battled to keep my shit together long enough to communicate, with my eye gaze-enabled AAC device, that whatever they sprayed down the hallway, was affecting my breathing adversely. (Shitcan the praise.)

I'm constantly baffled by the level of ignorance of my condition, by professional caregivers. People who are paid to take care of me, because my husband, who loves me, lacks the expertise. And, by the way, I have better-than-average caregivers coming through here. 

Regardless, I struggle daily because they have failed to latch onto the concept of the respiratory piece of ALS. They leave me flat on my back for too long of periods. They ask if I'm ready to go up from a flat-on-my-back down position. (They may as well be asking if I'm ready to breathe.) The answer is  "hell yes!" and "Duh!"

Let's call a Calico a Calico. I'm a blamer and a shamer. I believe recurring issues start at the top. I've been here long enough to see several crops of students cycle through here, and key issues haven't changed for ALS patients. Respiratory support and training is a joke, a bad joke. Caregivers using hand sanitizer right outside my door, and some still entering my room while using sanitizer, robbing me of air. Nurses not able to adequately mask-up my bipap. Whenever I've needed suction, either the nurse was not able to use the wand properly, or it took up valuable time to get it to work properly. (With the exception of Stephanie and Sara, who rocked it and saved me twice this week using the cough assist and suction machines.) Respect.

Much respect to Anthony, who saved me twice with the cough assist machine, but he moved on to greener pastures. Also, much respect to Jackie, who always, always took the time to get familiar with my machines and condition to provide teaching moments. She moved on to sail around the world. Awesome!

I can be positive, after all. We positively, absolutely need some help in respiratory safeguards. I suggest relocating the sanitizer and employing a physical barrier, a velcro banner across my doorway, that reads "respiratory precaution", or the like.
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Location: 2720 E Madison St, Seattle, WA 98112, USA

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