I'm really sick of this place. It's so dysfunctional. There are so many disconnects. For example, today I'm getting my medication and I notice the concoction is the wrong color. I ask the question and am told the order was changed by "the doctor", meaning the facility oncall doctor who I doubt rivals my ALS doctor, the head of neurology at the University of Washington Medical Center. I've had my Deanna Protocol routine approved by this board-certified physician and taken it for over two years. There is no flamin' way anyone at this place is remotely qualified to overrule me and my ALS doctor. We know this disease. They do not. Anyway, they made the change and nobody bothered to tell me. Typical. Disconnect. The night nurse got the order and the day nurse never passed on the information. Yesterday, the dietician wanted to reduce my folate. I said she doesn't get a vote. The nurse couched my refusal in more diplomatic terms.
Oh, and they're so attentive. It only takes an hour and a half to get your call light answered. Only an hour and a half to sit in shitty diapers or to stop choking or to overcome shortness of breath. So reassuring! I wish I were joking but the second shift is seriously taking that long the past two days! Of course, they cite being short-handed. "we are only three! " they say. And usually there are four for the 100- and 200-halls. (do not bother asking the management about the shortage, they have the innocent look down to a science. )
People are reading my blog! I cannot express my gratitude enough. My heart is soaring! Before I got ALS, it was a minor interest amongst many varied interests. Today, I am unable to physically participate in many of my prior interests, like motorcycling, photography, knitting and other handicrafts, hiking, traveling, painting, drawing, going to the gym, working in the garden, doing housework, canning, and cooking gourmet or ethnic foods. Therefore, I am more focused on the ones that are most accessible to me, such as reading via audiobook or e-book, television, movies, meditation, music appreciation, and writing. Like the blind man who's sense of hearing and smell is heightened, I'd like to think my crippled body has made me more attuned to things more on the spiritual and sensual level. Initially, when some members of my family read my blog, they chose to focus on what they viewed as negative. The feedback I got was harsh and personally critical. .I was told that I was ...
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