7:45 p.m. Friday


An aide is walking down the hall at James Square crying out “Anybody? Hey, anybody? Is there anybody here?”

She is alone with 34 patients.

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James Square, One Month


August 5
I awake around 7:30 a.m. in James Square and push my call bell for somebody to come in and either empty my catheter bag so I can get out of bed and go to the bathroom to rinse my dentures before breakfast, or go directly to the bathroom and rinse my dentures.
No one comes to answer the call bell. Sometime around 8:30 a.m. an aide brings my breakfast. I ask her to rinse my dentures and bring them to me. She brings them to me but it doesn’t taste like they have been rinsed.
The breakfast is cold scrambled eggs, no salt, a muffin, two hot coffees, juice, milk and a banana. When I met with the dietician, the first thing I asked for was variety; every day since then I have received cold scrambled unsalted eggs, milk and a banana. I said a banana with cold cereal. There has been no cold cereal. I press the call bell, ask for someone from the kitchen and explain all this. She explains that the choices for fruit are apple, orange, banana or canned fruit. No, they will not pare the apple. No, they will not provide me with a knife sharp enough to pare the apple.
My roommate is supposed to go home today. She is rehabbing from a stroke. They come in and tell her that she will not be going home. She cries. A lot. Tomorrow is her 71st birthday and there is a big party planned. They tell her that she has to stay and finish a round of antibiotics. She swears that she is not taking antibiotics and, even if she is, she is perfectly capable of taking them herself at home. Then they tell her that the antibiotics were stopped yesterday. No new reason is given for why she has to stay in rehab; she just is told she can go home tomorrow.
The aide tells me that I can get cleaned up by myself. I cannot because I have myalgic encephalomyelitis (ME). I have requested a copy of the physician’s admitting note to see if it includes myalgic encephalomyelitis, my most problematic disease. The nurse manager says I cannot have the note because the physician has not signed it. I was admitted 12 days ago. The aide has been given no guidance on what I can and cannot do.
Three days ago they drew my blood. Two days ago the nurse practitioner assured me that she would come yesterday, bring the results of the lab work, and go over it with me. I assured her that my board scores were high enough to get me into medical school. I can read the lab work without her help. She says she always goes over lab work with her patients. Yesterday she neither came to my room nor sent the lab work.
I tell the nurse manager that my call bell went unanswered for about an hour this morning. She says she’ll look into it; review the history of call bell usage. There is no follow-up.
The occupational therapist (OT) tells me that I have been taken off the physical therapist’s (PT) schedule. This is very bad because I have talked long and lengthily with the OT and PT to help educate them in the bizarre nature of ME. Despite the combined best efforts of the three of us, they have hurt me twice.
The OT goes downstairs, goes all mau-mau on the OT/PT director, and gets me put back on the PT’s schedule. I was awake most of the night with left back and hip pain, and a 45-minute wait for pain medicine.
I ask my aide for a gallon of distilled water for my auto BiPAP. The next time I see her, I ask how it’s going. She answers that she has called Dietary. I tell her that it is something for use in a medical machine, not dietary. She says she will call again.
The OT lady comes to get me for therapy. I have had my call bell on for someone to empty my catheter bag. No one has come. The OT lady says she’s never done it but she’s willing to try. I show her how, and we go down to the OT place. We walk some, bend some rubber bars, lift a 1-lb. bar and meet some people to plan some things.
I come back to my room, eat lunch, press the call bell, and nobody comes. I nap.
Last Monday morning they came and told me that I had a 9:30 a.m. appointment with the podiatrist. I replied, “No, I don’t. I don’t have an outside podiatrist, and the podiatrist here saw me on Saturday.” At 9:35 a.m. the beautician comes to take me to the beauty salon. I am not dressed. We talk and agree on an appointment today at 2:00 p.m.
Today I awake at 2:15 p.m., call the beauty salon, and am told that they are running late and will come for me in about 15 minutes.
At the same time, the psychologist walks into the room. We talk about the absence of scheduled appointments and the lack of control over your schedule. She says it’s the same way at Van Duyn, the county home for poor people.
Forty-five minutes later, the PT arrives. The psychologist leaves, the aide shows up and I ask her where the distilled water is. She says, “Thanks for reminding me; I’ll go call them.” And the PT does stretches to ease the pain in my left back/hip/leg.
No one from the beauty salon comes to get me for a haircut.
So which hurts the most:
• No haircut
• My left back/hip/leg
• My lack of control over my life
• The impending night without water for my auto BiPAP humidifier
August 7
On Friday, August 7, James Square Health and Rehabilitation Centre put a BiPAP machine by the empty door bed in Room 357, where I am in the window bed. Later the same day a big gray machine was also brought into the room; it is my understanding that it was some kind of oxygen generator. They knew a patient with respiratory problems was coming.
At exactly 5:00 p.m. Rural Metro Ambulance brought in Barbara Somebody, an obese 60-year-old woman who said she was there for respiratory therapy. She was on ambulance oxygen, which they removed and took with them. Barbara had come from Upstate Medical Center where she was in the ICU.
The only staff attention that she received during her first 45 minutes here was an aide getting her the remote control for her television.
Around 8:30 p.m. she called for help and was told that she needed a nebulizer treatment but there was no order in the computer and the floor nurse was waiting for an ambulance for another patient. The staff member delivered the message and left. Barbara started gasping and choking and calling for help again.
I sat up and looked at Barbara. The “oxygen generator” was not plugged in. The BiPAP was not set up for use. I called the main telephone number for James Square and said that my roommate couldn’t breathe and asked for the nursing supervisor. Moments later half a dozen staff raced into our room. Somebody had called a Code. They determined that Barbara was breathing and canceled the Code.
Her oxygen was reported as 80%; “healthy” is 95%. She was put on oxygen and the BiPAP, with threats that if she didn’t stop fighting the mask she would have to go back to the ER and ICU.
The nurse stepped around the curtain and asked me to call them if Barbara needed help again. She was from another floor and had come down to help out because the nurse on 3 South was overwhelmed.
It is 9:10 p.m. and Barbara is gasping again. She says she has taken off her mask because she can’t breathe with it on. I call the aide. After evaluating Barbara, she steps out in the hall and calls for help because she doesn’t know what to do.
Two weeks ago I was “admitted” at 6:00 p.m. on Friday. Among other things, I have chronic fatigue syndrome and unstable severe obstructive sleep apnea. I was desperately in need of sleep and spent 3-1/2 hours begging the staff to set up my auto BiPAP machine. They said the hospital discharge note did not provide the settings for the BiPAP. I tried repeatedly to tell them that an auto BiPAP does not have settings. It has a computer chip that readjusts with each breath taken. The staff would not listen or learn. They also would not bring me distilled water for the humidifier.
After 3-1/2 hours of waiting, I was edgy and irritated. The nursing supervisor said she was not going to talk to me until I was “civil,” and walked out. I had not raised my voice or sworn. It was no longer about proper medical care; it was now about serving the ego needs of the nursing supervisor.
I called the NYS nursing home complaint hotline, which was closed and said call 911. I called 911 and was offered the choice of being ambulanced back to the ER, which I took. None of this was recorded in the physician’s admitting note.
The next day a staff member told me that James Square used to limit admissions to daytime hours, then they discovered that they could “admit” late Friday, bill Medicare for bed occupancy Friday, Saturday and Sunday, and not provide services until the following week. James Square is engaging in Medicare fraud.
For Barbara and I, there was no nursing assessment upon admission. Nor were there appropriate medication orders in the computer. Nor were there appropriate orders for nursing care in the Codex. Nor was there any assessment from Dietary, Social Work or any other department until the following week.
August 13
So Barbara moved into my room at James Square rehab six days ago. She had gone from here to the hospital to back here. She says it used to be better. https://annecwoodlen.wordpress.com/2015/08/07/medicare-fraud-and-james-square/
She was on an oxygen machine, a Bi-PAP, and a nebulizer, and she continued to smoke. She did not know if she was diabetic, but she came back from a trip outdoors bearing a grocery bag containing big bags of Mounds, Butterfingers and chips.
The first night here, the nurses insisted that she let them remove one of her artificial, heavily painted fingernails so that they could check her oxygen level. She refused until I finally snapped at her “Your fingernail or your life, Barbara: choose one.” She let them take the end of one fingernail, and her oxygen level was found to be 80%. She was randomly compliant with using her oxygen supports.
Barbara had lumps all over her upper body. She also had a lump on her lower leg which, according to her, ruptured. She said it was infected, and it burned. From time to time the nurses would change the bandage. At all hours of the day and night, I would wake to hear her crying, moaning and generally bellowing like a stuck cow. When I would ask her what was wrong, she would declare unbearable pain in her leg.
When she would push her call bell for pain medicine, they wouldn’t come for 45 minutes to an hour. Yesterday morning she asked to have the dressing changed again. Her leg was weeping. They told her to put her foot up on a chair. She said, “All that’s going to do is get me a wet chair.” The nurses didn’t come to change the dressing until after dark. Moaning, weeping and wailing, she spent five days sitting up in bed and rocking in pain at night. She went to dialysis three days a week and called repeatedly for the nurse or doctor, neither of whom came.
Last night at 4:00 a.m., the aide loudly crashed my telephone to the floor while emptying the catheter bag. Then she couldn’t turn off the call bell, and prepared to leave our room with it locked on: neither Barbara not I would be able to call for help again. We are both in wheelchairs and cannot access the bathroom without help. The aide says that she is alone with 35 other patients to care for and she cannot spend any more time with the broken call bell.
The compromise is that an aide from upstairs brings down two tap bells for Barbara and me to use, without any certainty that the aide will hear or recognize them. We struggle through the rest of the night with Barbra continually crying for help and me needing to go to the bathroom.
At 8:00 a.m., I call the receptionist at the front desk and ask for the Maintenance Dept. A couple weeks ago, I had gotten a maintenance man up here. He stood in the middle of the room holding a new call bell cord and looking at the old one plugged into the wall. He said there was nothing wrong with it, and walked out.
This time two men came to the room and said they got a new call-bell system about a year ago and it never has worked right. When I ask if it came with a guarantee, they laugh, then change the cord. Now that it works, nobody answers it. Barbara is yelling for the nurse and saying she has to go to the bathroom and needs pain medicine.
The nurse practitioner and her partner come to the room, pull the curtain and start to examine Barbara. The NYS Dept. of Health Investigator whom I called yesterday appears around the curtain to see me.
The nurse practitioners, having finally looked at Barbara’s wound, call an ambulance and send her back to the hospital.
August 15 Two-hour wait for pain medicine.
On Friday evening, August 14, 2015, at James Square rehab center, aide Chaz helped me get ready for bed. At 8:30 p.m. I asked him to tell the nurse that I would like my bedtime pain medicine. He left the room, came back in a few minutes and said I would have to wait because the nurse was working alone on 3 South and there were four new patients being admitted. [Later, the nurse manager said there were only two new admissions.]

At 9:05 p.m. I rang the call bell. Chaz came again and I asked him to ask the nurse how much longer I would have to wait. Chaz remained at my bedside and told me again how busy the nurse was and how I would have to continue to wait. I firmly announced that I wanted the nurse’s estimate of wait-time, not his. He left the room, returned at 9:15 p.m. and said it would be another 20- to 25-minute wait.

At 9:45 p.m., I called the nursing station and asked for the nursing supervisor. She never came.

At 10:00 p.m. I went to sleep.

At 10:30 p.m. the nurse woke me up to give me the medicine that I had requested at 8:30 p.m. and 9:05 p.m. I asked her why I waited two hours. She replied that she was not aware that she had received any request. She said she would go back and check, and made to leave the room. I said, “Never mind, just give me the medicine and let me go back to sleep,” which she did.
August 21
On August 21 I pushed the call bell at 8:30 a.m. to get help getting cleaned up. No one answered the bell until 9:05. Call bells frequently are not answered for 30 to 45 minutes, whether you need to go to the toilet, request pain medication, or ask for information.

I was admitted on Friday July 24. On July 25, Dr. Bishop did a three-minute cursory examination and refused to answer my questions. She admitted me with myalgic encephalomyelitis (ME). I kept asking to see her. About a week later she came back. I asked her what she knew about myalgic encephalomyelitis. She said, “Nothing.” She had no plan to learn or consult with anyone who did know, but said that she didn’t need to know what ME was in order to develop a treatment plan. In fact, a primary diagnosis of ME compromises everything else you try to do in physical therapy. Physical therapist Brian is learning by trial and error what we can and can’t do. There is no guidance from Dr. Bishop.

Since arriving at James Square, I have acquired increasingly acute night-time pain in my lower back, thighs and knees. Initially it was treated with Tylenol and hydrocodone, but I could not tolerate the hydrocodone so Nurse Practitioner Levine was supposed to change it to a topical gel or a lidocaine patch. I only have night-time pain, but the lidocaine patch was ordered for the morning. Despite repeated refusals of the lidocaine patches and repeated requests to have it discontinued, every morning the med nurse brings it in. Two days ago, Dr. Bishop showed up. I asked for some change in the pain medication since I now was taking all three pain meds at night. Instead, on Wednesday, Dr. Bishop proposed an MRI to which I agreed. It is now Tuesday, a week later, and the MRI has not been scheduled.

When I was admitted Friday, July 24, the bed was broken. The remote control was always out of reach on the floor. I have virtually no upper-body strength and could not turn side-to-side. It took five days to get a new bed with quarter-rails and a pocket to hold the remote control. The right quarter-rail is dirty on the inside. I still could not pull myself up so Brain, the PT, ordered an over-the-bed trapeze, on August 18, expecting it to be installed within a few hours. It was not installed for a week.

On Friday, 21 August, my aide Courtney got me ready for bed. At 8:15 p.m. I asked her to tell the med nurse, Lance, that I would like my bedtime pain-killer. He did not come. At 8:30 p.m. I rang my call-bell. No one came until 8:45, at which time I asked again for Tylenol. The nurse did not bring it until 9:00 p.m., 45 minutes after I asked for it.

I woke up after 11:00 p.m. in extreme pain and asked for pain med. The floater nurse brought more Tylenol, only two hours after the first dose. I asked for the topical gel. She said the evening nurse had signed off that he’d given it to me at 10:00. I told her that I had not taken it at 10:00 and to please call the nursing supervisor. The nurse said she would when she had time. I picked up the phone, called the outside line, and got the nursing supervisor within two minutes. She and the floater came to talk to me, then she went to call the evening nurse. I was in extreme pain and had been screwing around with this for at least 45 minutes, so I asked for and got two hydrocodone. Then the floater and supervisor came with the topical gel and insisted on applying it. I resisted, saying I’d already taken the hydrocodone and I wasn’t going to take two pain killers for one pain. Under persistent questioning, the floater said that she “hadn’t read deeply enough” and that the evening nurse had written that he had NOT given me the topical gel. The floater and supervisor continued to insist that I take the topical gel.

On Sunday, August 16, aide Lester dropped my bag of personal laundry down the laundry chute. It did not come back Sunday or Monday. On Tuesday I started searching for it. I have talked to multiple people, including Lester, nurse Tammi, Nurse Manager Chris, someone from housekeeping, and the Director of Housekeeping. They have told me everything up to and including that my original clothing was not labeled, which is simply not true. I have been wearing pull-ups for nine days because housekeeping and social work keep passing the buck. I want my underwear replaced now.

At 5:40 p.m., August 24, a chair alarm went off. It shrieked non-stop for twenty minutes, at which time an aide informed me that all the staff was down in the dining room.

I have signed a release with Health Information Management to get a copy of my lab work. They refuse to give it to me because neither Dr. Bishop nor Nurse Practitioner Levine have looked at it and signed off on it. The blood was drawn by Quest lab on August 17, with the results expected back on the 18. It is now a week later and the doctor has not looked at it. Today I have refused to have blood drawn since nobody is looking at the test results.

I have asked Dr. Bishop for a copy of my weekly lab work. The process she has described for getting it is prohibitive.

Nurse Practitioner Levine changed my pain medication and then did not follow up.

August 2

I have been lodged in Room 357W since July 24. This morning, August 27, I woke up at 7:00 a.m. and pushed the call bell for assistance in going to the bathroom. Staff have left my wheelchair and walker out of reach on the other side of the room.

A woman down the hall calls loudly “Nurse! Nurse! Nurse!” for about fifteen minutes, as she does at least once every day. No one answers my call bell.

A chair alarm starts to shriek and continues for about15 minutes, as it does several times a day. One day it shrieked from 5:40 p.m. until 6:00 p.m. Then an aide came in with my dinner tray and said that all the staff was down in the dining room. It is not the first time that the floor has been left without staff.

I tried to call my physical therapist. First, you have to call James Square’s main outside line and follow the computer prompts, then get transferred to the inside line, which often rings 15 or 20 times before the receptionist answers. I ask for Physical Therapy but get re-run to the outside line again. I go through the prompts and get recycled to the outside line again. Again, I ask for Physical Therapy; again I get re-routed to the outside line. The receptionist says the line’s busy. I ask sharply why she didn’t tell me that. She laughs maliciously.

The nurse manager comes in at 8:05 a.m.—65 minutes after I rang the call bell—to ask me about scheduling an MRI. Dr. Bishop recommended it a week ago. It didn’t get scheduled until yesterday for today. They did not consult with me regarding the scheduling; today I have a meeting with my primary care physician. Good medicine is practiced by people; not machines—I postpone the MRI.

I ask the nurse manager if 3 South is any worse than the rest of the facility. Her answer is that she put in—[the woman down the hall is now screaming “Somebody! Help me!], 10:05]—for a transfer but is being kept on 3 South because her replacement is 70 years old and has pneumonia. The nurse manager says she doesn’t know why James Square is still open. When asked who is in charge of the facility, she says she doesn’t know. The administrator has recently been changed, but the nurse manager doesn’t know who’s in charge. She has given up and is trying to move out. She attributes a large part of the problem to the failure to adequately train the staff.

Breakfast is served from 8:00 to 9:30. At five minutes of 9:00, an aide brings my tray—cold–and reports that one of the four aides assigned has not shown up for work. When I ask how many patients there are, she leaves the room.
I wear trifocals and have cataracts. My glasses got broken in the hospital before I came to James Square on 7/24. Now they are telling me that they won’t be fixed until mid-Sept.

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“It Used to be Better”


So Barbara moved into my room at James Square rehab six days ago. She had gone from here to the hospital to back here. She says it used to be better. https://annecwoodlen.wordpress.com/2015/08/07/medicare-fraud-and-james-square/

She was on an oxygen machine, a Bi-PAP, and a nebulizer, and she continued to smoke. She did not know if she was diabetic, but she came back from a trip outdoors bearing a grocery bag containing big bags of Mounds, Butterfingers and chips.

The first night here, the nurses insisted that she let them remove one of her artificial, heavily painted fingernails so that they could check her oxygen level. She refused until I finally snapped at her “Your fingernail or your life, Barbara: choose one.” She let them take the end of one fingernail, and her oxygen level was found to be 80%. She was randomly compliant with using her oxygen supports.

Barbara had lumps all over her upper body. She also had a lump on her lower leg which, according to her, ruptured. She said it was infected, and it burned. From time to time the nurses would change the bandage. At all hours of the day and night, I would wake to hear her crying, moaning and generally bellowing like a stuck cow. When I would ask her what was wrong, she would declare unbearable pain in her leg.

When she would push her call bell for pain medicine, they wouldn’t come for 45 minutes to an hour. Yesterday morning she asked to have the dressing changed again. Her leg was weeping. They told her to put her foot up on a chair. She said, “All that’s going to do is get me a wet chair.” The nurses didn’t come to change the dressing until after dark. Moaning, weeping and wailing, she spent five days sitting up in bed and rocking in pain at night. She went to dialysis three days a week and called repeatedly for the nurse or doctor, neither of whom came.

Last night at 4:00 a.m., the aide loudly crashed my telephone to the floor while emptying the catheter bag. Then she couldn’t turn off the call bell, and prepared to leave our room with it locked on: neither Barbara not I would be able to call for help again. We are both in wheelchairs and cannot access the bathroom without help. The aide says that she is alone with 35 other patients to care for and she cannot spend any more time with the broken call bell.

The compromise is that an aide from upstairs brings down two tap bells for Barbara and me to use, without any certainty that the aide will hear or recognize them. We struggle through the rest of the night with Barbra continually crying for help and me needing to go to the bathroom.

At 8:00 a.m., I call the receptionist at the front desk and ask for the Maintenance Dept. A couple weeks ago, I had gotten a maintenance man up here. He stood in the middle of the room holding a new call bell cord and looking at the old one plugged into the wall. He said there was nothing wrong with it, and walked out.

This time two men came to the room and said they got a new call-bell system about a year ago and it never has worked right. When I ask if it came with a guarantee, they laugh, then change the cord. Now that it works, nobody answers it. Barbara is yelling for the nurse and saying she has to go to the bathroom and needs pain medicine.

The nurse practitioner and her partner come to the room, pull the curtain and start to examine Barbara. The NYS Dept. of Health Investigator whom I called yesterday appears around the curtain to see me.

The nurse practitioners, having finally looked at Barbara’s wound, call an ambulance and send her back to the hospital.

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Medicare Fraud and James Square


On Friday, August 7, James Square Health and Rehabilitation Centre put a BiPAP machine by the empty door bed in Room 357, where I am in the window bed. Later the same day a big gray machine was also brought into the room; it is my understanding that it was some kind of oxygen generator. They knew a patient with respiratory problems was coming.

At exactly 5:00 p.m. Rural Metro Ambulance brought in Barbara Somebody, an obese 60-year-old woman who said she was there for respiratory therapy. She was on ambulance oxygen, which they removed and took with them. Barbara had come from Upstate Medical Center where she was in the ICU.

The only staff attention that she received during her first 45 minutes here was an aide getting her the remote control for her television.

Around 8:30 p.m. she called for help and was told that she needed a nebulizer treatment but there was no order in the computer and the floor nurse was waiting for an ambulance for another patient. The staff member delivered the message and left. Barbara started gasping and choking and calling for help again.

I sat up and looked at Barbara. The “oxygen generator” was not plugged in. The BiPAP was not set up for use. I called the main telephone number for James Square and said that my roommate couldn’t breathe and asked for the nursing supervisor. Moments later half a dozen staff raced into our room. Somebody had called a Code. They determined that Barbara was breathing and canceled the Code.

Her oxygen was reported as 80%; “healthy” is 95%. She was put on oxygen and the BiPAP, with threats that if she didn’t stop fighting the mask she would have to go back to the ER and ICU.

The nurse stepped around the curtain and asked me to call them if Barbara needed help again. She was from another floor and had come down to help out because the nurse on 3 South was overwhelmed.

It is 9:10 p.m. and Barbara is gasping again. She says she has taken off her mask because she can’t breathe with it on. I call the aide. After evaluating Barbara, she steps out in the hall and calls for help because she doesn’t know what to do.

Two weeks ago I was “admitted” at 6:00 p.m. on Friday. Among other things, I have chronic fatigue syndrome and unstable severe obstructive sleep apnea. I was desperately in need of sleep and spent 3-1/2 hours begging the staff to set up my auto BiPAP machine. They said the hospital discharge note did not provide the settings for the BiPAP. I tried repeatedly to tell them that an auto BiPAP does not have settings. It has a computer chip that readjusts with each breath taken. The staff would not listen or learn. They also would not bring me distilled water for the humidifier.

After 3-1/2 hours of waiting, I was edgy and irritated. The nursing supervisor said she was not going to talk to me until I was “civil,” and walked out. I had not raised my voice or sworn. It was no longer about proper medical care; it was now about serving the ego needs of the nursing supervisor.

I called the NYS nursing home complaint hotline, which was closed and said call 911. I called 911 and was offered the choice of being ambulanced back to the ER, which I took. None of this was recorded in the physician’s admitting note.

The next day a staff member told me that James Square used to limit admissions to daytime hours, then they discovered that they could “admit” late Friday, bill Medicare for bed occupancy Friday, Saturday and Sunday, and not provide services until the following week. James Square is engaging in Medicare fraud.

For Barbara and I, there was no nursing assessment upon admission. Nor were there appropriate medication orders in the computer. Nor were there appropriate orders for nursing care in the Codex. Nor was there any assessment from Dietary, Social Work or any other department until the following week.

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So Which Hurts the Most?


I awake around 7:30 a.m. in James Square and push my call bell for somebody to come in and either empty my catheter bag so I can get out of bed and go to the bathroom to rinse my dentures before breakfast, or go directly to the bathroom and rinse my dentures.

No one comes to answer the call bell. Sometime around 8:30 a.m. an aide brings my breakfast. I ask her to rinse my dentures and bring them to me. She brings them to me but it doesn’t taste like they have been rinsed.

The breakfast is cold scrambled eggs, no salt, a muffin, two hot coffees, juice, milk and a banana. When I met with the dietician, the first thing I asked for was variety; every day since then I have received cold scrambled unsalted eggs, milk and a banana. I said a banana with cold cereal. There has been no cold cereal. I press the call bell, ask for someone from the kitchen and explain all this. She explains that the choices for fruit are apple, orange, banana or canned fruit. No, they will not pare the apple. No, they will not provide me with a knife sharp enough to pare the apple.

My roommate is supposed to go home today. She is rehabbing from a stroke. They come in and tell her that she will not be going home. She cries. A lot. Tomorrow is her 71st birthday and there is a big party planned. They tell her that she has to stay and finish a round of antibiotics. She swears that she is not taking antibiotics and, even if she is, she is perfectly capable of taking them herself at home. Then they tell her that the antibiotics were stopped yesterday. No new reason is given for why she has to stay in rehab; she just is told she can go home tomorrow.

The aide tells me that I can get cleaned up by myself. I cannot because I have myalgic encephalomyelitis (ME). I have requested a copy of the physician’s admitting note to see if it includes myalgic encephalomyelitis, my most problematic disease. The nurse manager says I cannot have the note because the physician has not signed it. I was admitted 12 days ago. The aide has been given no guidance on what I can and cannot do.

Three days ago they drew my blood. Two days ago the nurse practitioner assured me that she would come yesterday, bring the results of the lab work, and go over it with me. I assured her that my board scores were high enough to get me into medical school. I can read the lab work without her help. She says she always goes over lab work with her patients. Yesterday she neither came to my room nor sent the lab work.

I tell the nurse manager that my call bell went unanswered for about an hour this morning. She says she’ll look into it.

The occupational therapist (OT) tells me that I have been taken off the physical therapist’s (PT) schedule. This is very bad because I have talked long and lengthily with the OT and PT to help educate them in the bizarre nature of ME. Despite the combined best efforts of the three of us, they have hurt me twice.

The OT goes downstairs, goes all mau-mau on the OT/PT director, and gets me put back on the PT’s schedule. I was awake most of the night with left back and hip pain, and 45-minutes wait for pain medicine.

I ask my aide for a gallon of distilled water for my auto BiPAP. The next time I see her, I ask how it’s going. She answers that she has called Dietary. I tell her that it is something for use in a medical machine, not dietary. She says she will call again.

The OT lady comes to get me for therapy. I have had my call bell on for someone to empty my catheter bag. No one has come. The OT lady says she’s never done it but she’s willing to try. I show her how, and we go down to the OT place. We walk some, bend some rubber bars, lift a 1-lb. bar and meet some people to plan some things.

I come back to my room, eat lunch, press the call bell, and nobody comes. I nap.

Last Monday morning they came and told me that I had a 9:30 a.m. appointment with the podiatrist. I replied, “No, I don’t. I don’t have an outside podiatrist, and the podiatrist here saw me on Saturday.” At 9:35 a.m. the beautician comes to take me to the beauty salon. I am not dressed. We talk and agree on an appointment today at 2:00 p.m.

Today I awake at 2:15 p.m., call the beauty salon, and am told that they are running late and will come for me in about 15 minutes.

At the same time, the psychologist walks into the room. We talk about the absence of scheduled appointments and the lack of control over your schedule. She says it’s the same way at Van Duyn, the county home for poor people.

Forty-five minutes later, the PT arrives. The psychologist leaves, the aide shows up and I ask her where the distilled water is. She says, “Thanks for reminding me; I’ll go call them.” And the PT does stretches to ease the pain in my left back/hip/leg.

No one from the beauty salon comes to get me for a haircut.

So which hurts the most:
• No haircut
• My left back/hip/leg
• My lack of control over my life
• The impending night without water for my auto BiPAP humidifier

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Search Terms


Sometimes it is fun to check the last 30 days of search terms used on this blog. Today’s round-up starts with—

Can you wear dentures with BiPAP Dentures should be worn during the day and left out during the night. BiPAP (breathing) machines should be used whenever you sleep. Nothing needs to be changed. Yes, you can wear dentures with a BiPAP machine during the day; no, you don’t need to wear dentures with a BiPAP at night. Although my dentist sometimes wonders if the BiPAP mask is altering the shape of my mouth, but I can’t separate the mask from the whole clunking machine to take it in to show him. I don’t think it’s applying pressure anywhere that matters.

Are whites on Medicaid
About 12% of Americans are black, so in raw numbers a heck of a lot more whites than blacks are on Medicaid. Medicaid is for poor people, regardless of color. There are more poor whites than poor blacks.

Will Medicaid pay for a dating for people with celiac
This question makes no sense at all. Medicaid pays for health care for poor people. Celiac disease is a medical condition in which any food containing the gluten protein—wheat, rye, oats, barley, etc.—cannot be digested in the gut. The only treatment for celiac disease is to not eat any food containing gluten. The phrase “for a dating” makes no sense. Neither Medicaid nor Food Stamps make any special provisions for people with celiac disease however, I think Food Stamps should. You can actually die from untreated celiac disease, and the kinds of things that have to be substituted for wheat and other gluten-containing foods are substantially more expensive than wheat bread, etc. [And for the aide who said, “Oh, this isn’t wheat bread, this is regular bread”—what do you think “regular” bread is made from? Wheat!] Gluten-free substitutes for poor people with celiac disease should be subsidized; they aren’t.

Antidepressants and pheromones Antidepressants are pharmaceuticals; pheromones are hormones that, in the adult male and adult female, send and receive messages of sexual availability and attractibility. There is preliminary evidence that pharmaceuticals of any type, not just antidepressants, shut down pheromone production. Just the same as the cat on the back fence, human beings rely on olfactory sensations to be attracted to one another. Without pheromones, we are not attracted. It is not that he isn’t attracted to you because you are fat; it may be that he is not attracted to you because you are taking antidepressants. Two years after I started taking antidepressants, men stopped dating me. Twenty-four years later, after I stopped taking antidepressants, I became sexually attractive and active again. There is hope.

Medicaid white women The largest group of people receiving support from the Onondaga County Dept. of Social Services are single white women with minor children.

john holcomb syracuse n.y. What I heard was that one of the secretaries from the District Attorney’s Office got drunk. She was young, sweet and demure—her typical attire was a gray skirt, pink sweater and string of pearls. In her drunkenness, she accepted a ride home from District Attorney Jon Holcombe. The 1976 clambake was held in the county adjacent to Onondaga. Holcombe raped her once in his car in Madison County and again in Onondaga County. She resigned from her job the next morning and refused to file a rape complaint. She was well-liked by the D.A.’s staff and they were protective of her. That’s the story I heard from sources inside the D.A.’s Office.
What was reported in the newspaper was that Holcombe resigned from office after pleading guilty to one count of misdemeanor driving while intoxicated. The plea was accepted in settlement of an indictment that included two counts of misdemeanor sexual abuse. By pleading to a misdemeanor, Holcombe kept his license to practice law.

Can I live on $821.a month Sure, lots of us do it all the time. $821 is about the minimum for Social Security. You will not be able to maintain a car, nor will you be able to afford entertainment but there are free concerts and lectures. Cable television and the Internet will be very iffy. On $821 a month, you will have to live in HUD subsidized housing where they figure your rent by taking all your income, subtracting out-of-pocket medical expenses and dividing by three. My rent is $104 a month; the apartment is 540 square feet. You will get about $86 a month in Food Stamps, and all the Medicaid Clinics you want to wait in line for.

People with Asperger’s are surrounded by assholes Not true. People with Asperger’s Syndrome often behave like assholes; it is sometimes hard to tell the difference.

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Medicaid Secondary, Medicare Primary


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.

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