My name is Anne C Woodlen. I am 68 years old and reside at McCarthy Manor, 501 S. Crouse Ave., Syracuse, N.Y. 13210.
In early June I developed sciatica in my right hip and was ambulanced to SUNY Upstate/Community General Hospital ER for pain management and then for repeatedly falling during the middle of the night while trying to get to the bathroom to empty my catheter.
Finally, I was admitted to Community General Hospital’s Observation Unit for five days, after which I was transferred to Sunnyside Care Center for rehab. Sunnyside, located in East Syracuse, was substandard and did an unsafe discharge.
• They did not have enough supplies, e.g., when a washcloth was dropped on the floor, it was replaced with a towel because there were no more washcloths. Instead of the typical bedside water pitchers, they used hard-plastic water glasses. When the nurse took my glass to re-fill it, she did not bring it back. When another nurse followed up, she brought me a 4 oz. paper cup, saying there were no more glasses. I have nephrogenic diabetes insipidus and have to drink about a gallon and a half a day.
• Although staff in a nursing home, they did not know how to drain a catheter. No fewer than three staff members flooded the floor in the process of trying to drain my cath bag.
• Staff were not properly trained to take vital signs. A young woman came in to check my vital signs. I asked her where the blood pressure cuff was. She replied, “I don’t know; I’ve never done this before.” She left and did not return. On another occasion, a young male aide told me that my blood pressure was 90. “Ninety what?” I asked. We went around on that several times, with him repeatedly saying just “90.” When I turned the monitor around so I could read it myself, it was 160/90.
The social worker (Melissa?) came in and announced that I was being discharged on Friday. I never agreed to being discharged. I knew that I could not go home safely (I am alone 21 hours a day and virtually bed-ridden) but also I could not stay at Sunnyside with all its substandard care. I didn’t know what to do. I repeatedly tried to call the director but none of the phone numbers I tried got me connected to his office.
On Friday morning, July 3, the nursing supervisor (Natasha?) came to my room with ten prescriptions and a hand-written discharge plan. I lived on Meals on Wheels, which was closed for the three-day holiday weekend. When I asked the nursing supervisor what I was supposed to eat, she said my aide could cook for me.
• My aide couldn’t cook.
• I had been out of the apartment for two weeks so there was nothing fresh and eatable in the refrigerator.
• Because of ill health, I hadn’t been able to go grocery shopping in a month. There was nothing to eat in the apartment.
The ten prescriptions included OT, PT, a walker and a commode. I have been using a power wheelchair for ten years. When I asked how I was supposed to get those prescriptions filled, she said “Your usual way.” I don’t have a “usual way”; I don’t take drugs. “Then your aide,” the supervisor said. My aide doesn’t drive; she takes the bus, and you can’t shop for large cumbersome appliances by bus.
The supervisor got mad, grabbed the prescriptions and discharge notes and stormed out of the room, not to be seen again. This was the same nursing supervisor who, on the first day I was at Sunnyside, demanded to know why I could not shower myself. I said “Because I have S.E.I.D.—do you know what that is?”
Natasha (?) said “yes.” At a later time, she could not answer any questions about symptoms or treatment of S.E.I.D., or where she had learned about it. It is a rare disease that most physicians do not know about. Natasha was lying.
She went on to decide that she would post two physical therapists and one nursing staff member—fully clothed—in the doorway of the shower and have them watch me get naked and try to shower myself. Natasha’s plan was not to do a medically necessary evaluation, but to publically humiliate me. The embarrassment did not take place, apparently because the physical therapists would not cooperate.
My discharge from Sunnyside was unsafe. I had no way to get the things I needed to be at home safely. One day I called Sunnyside four times to talk to Vanessa, my physical therapist, and try to find out where to get an occupational therapist. The phone at the facility was not answered any of the four times.
At home alone, except for an aide from 8:00 a.m. to 11:00 a.m., I got progressively worse. Without a walker, I was repeatedly falling during the night and having to call the ambulance to pick me up. The last day, I didn’t even have enough strength to get out of the recliner. I called an ambulance and went back to SUNY Upstate/Community General.
After a time in the ER, I was admitted to Observation again, and this time was seen by a neurologist who ordered an MRI. I was admitted to regular inpatient with a diagnosis of uncontrolled diabetes and weakness of the legs. The neurologist was of the opinion that that was the cause of my problems, not the S.E.I.D. (systemic exertion intolerance disease) nevertheless, she got me scheduled with a neuroimmunologist at Upstate Medical Center in September.
Anne C Woodlen: Notes in Passing 
I had similar experiences in California at my then HMO Kaiser Permanente. They treated me as if i choose to be problematic. All because i repeatedly stated “something was wrong and No it was Not all-in-my-head” as they’d consistently parot back to me.
My symptoms for those 3-4 months were choking whenever I dared attempt to eat any solid foods, choking on all foods from mashed potatoes to a single green pea. My throat closed up without warning and I’d turned blue. There was much pain and vomiting, along with these horrifying episodes in which i could only take in very little tiny breaths, as if my lung could no longer expand correctly.
And after ~6 calls to 911, 12 office visits and maybe 10 trips to the E.R. my diagnosis was always the same: anxiety.
Right, cerianly i couldn’t have been upset Because I Couldn’t breath.. no see to them i was first anxious and upset which then Caused the breathing difficulty. Idiots. And That is what they charted and what each and every other doctor and nurse read perpetualizinf their own diagnosis every time I’d come back seeking help I’d be treated like a psych patient who really didn’t need their time, I was a waste of it.. they treated me rudely like I wasn’t worth their effort. I was their problematic patient Turns out my gallbladder was infected and leaking bile backwards I to my stomach burning my esophagus and lung tissue as I was breathing that in and on and on it goes.
I did not fit into the usual-box. I wasnt (at that point) Fat.. nor forty or over, Fair, or Female. So They missed it the first go around and after that What Was Written Was Written.
And no one could be bothered to think or look further.
To them I was a pest a jerk whenever I insisted ‘ THEY’ were wrong. I had dared to question them. To contradict. But if I didnt speak up, if I didn’t insist then who??
And that is a terrible position to find yourself in. To be forced to contradict them knowing they’ll label and chart you as uncooperative and demanding. It’s a shame Anne, truly a shame when doctors or nurses first reaction is to lie or get defensive. YOU know what your aid can and can’t do.. what you’re in actual Need Of.
It’s also highly unlikely anyone Anywhere knows Every Single Disease known to mankind! But still some feel the need to pretend they do.. as if being honest about what they Don’t Know will make them less than less respected. Seems honesty and sincerety, along with competence to be a rare find these days. Your writing here confirms it.
I thank you for sharing your exact experiences as always.
May there soon be a nurse/doctor/discharge planner Somebody, who will truly listen to what your needs are. And actually help you with them.
Peace be with you, peace be with us all.
The diagnosis is in the history. The patient knows what is wrong. If the doctor will just listen then s/he too will know what is wrong.
They went to discharge me on Friday but I refused to accept the discharge because it included “schizoaffective disorder” as one of my daignoses. The first time I’d heard that one was the first time I’d showed up in the Upstate/Community General ER. I said “No competent mental health professional has ever looked me in the eye and given me that diagnosis. I will not carry it forward to any other facility.” They wanted me out of their bed. I just stood firm until they deleted the diagnosis. There was no professional’s name attached to the diagnosis. Finally the schizoaffective diagnosis was removed and replaced with General Weakness, added to the Generalized Weakness I already had. Apparently all you have to do is stand firm and they’ll remove the offending psychiatric diagnosis.