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. )
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.
Comments
Post a Comment