Tag Archives: myalgic encephalomyelitis

Centro and the Smoke Alarm


This morning I learned that in November 2013 a palliative-care nurse practitioner testified at a hearing that with my glucose level as high as it was, I would be dead within six months. Here I still am. I’ve been counted … Continue reading

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Taking the Fear Out


Bob Savage, night nurse. I cannot see his face but his large, dark bulk appears out of the night’s darkness in my room at Crouse Hospital. He moves swiftly and silently, leaning over my bed to whisper “What do you … Continue reading

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Trying to Talk to the Doctor (Part II)


Dr. Kelly, Back to your first email—I have been worked up by three allergists and four rheumatologists in the Syracuse area. The allergists all say “This is beyond my area of expertise—out of my territory.” The rheumatologists tell me there … Continue reading

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To Dr. Eastwood, Interim President, Upstate (Part II)


This year I went to the Joslin Diabetes Center, a new patient presenting with a glucose level of 570. I was seen by a Fellow, then the attending, Dr. Kelly. I had googled “CFIDS + glucose” and found several recent … Continue reading

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To Dr. Eastwood, Interim President, Upstate


Dear Dr. Eastwood, I apologize for the fury with which I attacked you this afternoon. The top issue was that the sidewalks on Adams Street are blocked on both sides—one side because of Upstate’s building project and now, this week, … Continue reading

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What Is Really Going On Here?


Last week I called the home health care agency that was supplying my home health aide and asked them what their policy is about aides using cell phones. In the olden days, around 1995, the standard policy was that no … Continue reading

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First Anniversary (Part II)


When I was returned to the Iroquois Nursing Home I was put on the palliative care floor. In fact, they moved another woman out in order to put me in the last room at the back of the unit where … Continue reading

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