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