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

About annecwoodlen

I am a tenth generation American, descended from a family that has been working a farm that was deeded to us by William Penn. The country has changed around us but we have held true. I stand in my grandmother’s kitchen, look down the valley to her brother’s farm and see my great-great-great-great-great-grandmother Hannah standing on the porch. She is holding the baby, surrounded by four other children, and saying goodbye to her husband and oldest son who are going off to fight in the Revolutionary War. The war is twenty miles away and her husband will die fighting. We are not the Daughters of the American Revolution; we were its mothers. My father, Milton C. Woodlen, got his doctorate from Temple University in the 1940’s when—in his words—“a doctorate still meant something.” He became an education professor at West Chester State Teachers College, where my mother, Elizabeth Hope Copeland, had graduated. My mother raised four girls and one boy, of which I am the middle child. My parents are deceased and my siblings are estranged. My fiancé, Robert H. Dobrow, was a fighter pilot in the Marine Corps. In 1974, his plane crashed, his parachute did not open, and we buried him in a cemetery on Long Island. I could say a great deal about him, or nothing; there is no middle ground. I have loved other men; Bob was my soul mate. The single greatest determinate of who I am and what my life has been is that I inherited my father’s gene for bipolar disorder, type II. Associated with all bipolar disorders is executive dysfunction, a learning disability that interferes with the ability to sort and organize. Despite an I.Q. of 139, I failed twelve subjects and got expelled from high school and prep school. I attended Syracuse University and Onondaga Community College and got an associate’s degree after twenty-five years. I am nothing if not tenacious. Gifted with intelligence, constrained by disability, and compromised by depression, my employment was limited to entry level jobs. Being female in the 1960’s meant that I did office work—billing at the university library, calling out telegrams at Western Union, and filing papers at a law firm. During one decade, I worked at about a hundred different places as a temporary secretary. I worked for hospitals, banks, manufacturers and others, including the county government. I quit the District Attorney’s Office to manage a gas station; it was more honest work. After Bob’s death, I started taking antidepressants. Following doctor’s orders, I took them every day for twenty-six years. During that time, I attempted%2
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4 Responses to So Which Hurts the Most?

  1. I’m not looking for this comment to be public. What’s the purpose of your blog? Just venting? Must be. Hope it works for you. I reached out to you more than once via email to see about making a difference in the current, ROTTEN health care system we all live with. You were worried I was too “invested” in you. I thought you were trying to generate juice to change things. Mais non.

    Things suck and you don’t seem to be getting any traction on anything.

    You declined to give me an email address to write to … for reasons unclear. One might get it from an ever growing list of people. Just read your blog and call up any of the asshats you’ve publicly pissed on; Centro Mgmt, Syracuse Housing Authority, McCarthy Manor, James Square, Sunnyside…. every month, more people. You growl and whimper.

    Wouldn’t it feel better if you made some progress? One person can’t fix a broken system. For that the victimized must cooperate, get juice, have a plan, and get others to assist with actions.

    Finding out where to complain about what is harder with increasing levels of administrative obfuscation and bureaucracy. Everyone must ferret out where to send complaints and how to apply useful pressure. Or… you can howl at the moon all alone…..

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