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, the other sidewalk has been torn up—thus forcing all pedestrians, including me in my wheelchair—out into the heavy traffic on Adams Street from Rt. 81 and up to the major employers, Upstate and Syracuse University.
I don’t even know if Upstate had any hand in the sidewalk being torn up this week. I also have contacted the City of Syracuse about the problem. You simply can’t leave the pedestrian citizens, most of who are headed into Upstate Medical Center, with no safe means of access. Shut down one lane of Adams Street and divert vehicular traffic down to Harrison Street. I don’t think anyone currently can get from the parking lot into the hospital without walking in the street.
My anger at Upstate Medical Center has been getting worse by the month. When I first moved to Syracuse in 1966, I believed that Upstate was the place for the worst medical problems. The biggest, most complicated sicknesses would go to Upstate and find people committed to healing. Back in the 1970’s, when I worked on the newly opened psychiatric unit, I still believed that.
My primary complaint is what the international medical consortium calls myalgic encephalomyelitis. The United States calls it chronic fatigue immune dysfunction syndrome (CFIDS) and Central New York disparages it as chronic fatigue syndrome. Last year I spent eight months shuttling back and forth between hospitals and a nursing home because of it. I am sick, and what does Upstate have to offer?
Rheumatologist Dr. Fatme Allam is the only person who lists chronic fatigue syndrome on her profile. I have been trying to get an appointment with her since last November; I now am told that she might see me in September. V.A. patients only have to wait three months. I’m waiting ten months.
Myalgic Encephalomyelitis is a disease of the nervous and immune systems. I was told that Dr. Andras Perl was an immunologist, despite his position in the Rheumatology Clinic. I already had been worked up by rheumatologists three times, to no avail, nevertheless, I saw Dr. Perl. He ordered two dozen tests, about seven of which were abnormal, however he had a different explanation for why each test was abnormal. Lately, a female clerical person has insisted that Perl is not an immunologist; when asked if he is, Perl did not answer.
He referred me, specifically and exclusively, to neuroimmunologist Dr. Burk Jubal, however the buzz words Perl used in sending the referral did not match the buzz words that Dr. Jubelt accepts, so a secretary refused to make the appointment. I followed up with Perl, expecting that he would pick up the phone and call Dr. Jubelt, saying something like, “Hey, this is an unusual case—would you take a look?” Instead, Perl disclaimed having made the referral, and offered to refer me to Dr. Allam who, as noted, is not accepting referrals.
Myalgic encephalomyelitis (ME) is at least fifty percent an immune disease. I have it so severely that I cannot tolerate any medication for anything. Antidepressants are particularly contraindicated, however I didn’t know I had ME and so—being an astoundingly compliant patient—I took antidepressants every day for 26 years. No physician should have prescribed them for more than six months, consequently, I have been in a wheelchair for the past ten years.
I also have diabetes mellitus, type II, but because of the ME I cannot tolerate medication. I’ve been tried on medication, including insulin, four times. My current glucose average is 455. That is what I have to live with because Upstate’s physicians won’t work with me. (To be continued)