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Sweet Smell of Success

Pleasantly surprised today, a nurse relayed a message from the Director of Nursing, a change is coming.

The other night, a patient care technician (PCT) sprayed a heavy duty air freshener down the hallway...nearly suffocating me. Unfortunately, it was not the first time. I have ALS, amyotrophic lateral  sclerosis, a neurological degenerative disease which has progressed far enough that it has impacted my breathing. Furthermore, I am a quadriplegic, meaning all four of my limbs are paralyzed, and unable to speak intelligibly.

I live in a skilled nursing facility, also known as a sniff (SNF). I rely 100% on caregivers to attend to my every need. Imagine my dilemma, I have approximately 10% Forced vital capacity (FVC), Meaning that is all the air that I can breathe, compared to the 110% that I started with. Now, I'm contending with toxic pollutants invading my hospice room. Insult to injury, I cannot escape nor can I tell anybody to close the door and open a window. I'm desperately trying to use my eye gaze-operated speech generating device, to communicate to the first caregiver that answers the call bell. My lungs are burning; I can hardly breathe. I can taste it, now.

I'm so incensed by the senseless, potentially life-threatening nature of this situation, I fire off an email to the boss. Uh oh! Tired, threatening emails sent in the heat of the moment, take a whole other meaning 24 hours later; What did I do?

Apparently, my complaint highlighted a problem, whose time has come. The facility will get a whole new way to deal with odors, an ionizer.

I just wish I was not such a b**ch!


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