Tonight on Onondaga Hill

Greetings. I come to you from high atop Onondaga Hill where I am in the Observation Unit of Upstate-Community General Hospital (again) and can see all of Lake Onondaga and a good bit of the North Country.

And now I am mad as hell. Because of my illnesses, I am best cared for if I am presented with supper at 5:00 p.m. This afternoon I was ambulanced to the ER at 1:45 p.m. Trying to be pleasant, win friends and influence people, I waited patiently for supper until 6:15 p.m. then rang for the nurse and inquired about feeding time. She said it would be at 7:00 p.m. I did not believe her. I have 68 years of life experience, including a total of about four years spent in hospitals, and I know that the hospital administration wants all the kitchen staff to be clocked out before 7:00 p.m.

Well, to make a long story short, I was transferred to Observation at 7:00 p.m. and when I asked for supper then I was told that it had been served at 5:00 p.m. Lying to the patient is a really mean thing to do.

Anyway, the Observation Unit staff is trying to get me (a) Respiratory, to set up my auto BiPAP, which they will have never seen before and I will have to talk them through it, just as I could talk anyone through it, except that nursing staff’s refuse to learn; (b) a hot meal and not my third turkey sandwich of the day; and (c) the social worker to turn on my telephone and television, which I cannot afford to at a rate of $10/day.

Anyway, here’s the important thing: I was interviewed by a nice ER doctor who had never heard of systemic exertion intolerance disease, or it’s last-year name, myalgic encephalomyelitis, or its previous name, chronic fatigue immune dysfunction, or its other previous name, chronic fatigue syndrome, or its original name, chronic Epstein Barr, or, as the good doctor said, “They have no idea what it is.”

Right. Exactly. Precisely. You got it.

So the good doctor decided to order blood work and see if there was something he could legitimately[under Medicare] admit me for, with the nurse nudging him to notice my indwelling catheter. That’s always a good source for bacteria. Then he went his way and I lay there and thought about it.

And what I thought about is how much I have been abused in nursing homes and hospitals by the nursing staff because the doctors haven’t told them the truth about what is wrong with me because the doctors don’t know. And I decide to change the game.

I ask to see the good doctor and when I do, I explain about SEID/ME/CFIDS/CFS being an autoimmune disease that affects the nervous system and the immune system. There isn’t anything that I’ve got wrong with me that we couldn’t effectively treat if it weren’t for the SEID. Turn around and face the SEID and deal with it.

Upstate University Hospital is supposed to be this great teaching and research hospital, I say, so let’s deal with it. The good doctor laughs, tee-hee, ha-ha, and says, “You mean the downtown campus of Upstate is all that great stuff. The Community General Hospital campus is still the same old little community hospital that it was before Upstate bought us.”

Oh. Oh dear. I didn’t know that. The two campuses are being advertised to the citizens as one-size-fits-all. I explain to the good doctor the stupid, abusive, multiple experiences I’ve had in trying to get to Upstate’s single neuroimmunologist, who, he says, probably wouldn’t be on call even if he called him. I say, “But you could at least try, couldn’t you?”

He doesn’t say he could, but he comes back later and tells me that the Upstate neuroimmunologist is off, and that he talked to the Community General neurologist, and I will be admitted to Observation overnight and the neurologist will see me in the morning.

How about that?

There’s a whole lot more to tell, but I’ve got to go eat my third sandwich, this time PB&J, because of that lying bitch nurse in the ER, may she be stuck on nights for a month and have to eat from vending machines.

P.S. This whole story started this morning around 6:00 a.m. when I fell at home. It was my second fall in two days. And then later this morning I was not able to get out of my recliner. My aide got me up and back to bed then left me alone at 11:00 for the rest of the day. This simply could not go on; something had to be done. All who were consulted agreed that going back to Upstate-Community was the thing to do. Except me. I lay there and wondered how painful it would be and how long it would take to die if I just stayed in bed without food or water and with a catheter and let nature take its course.

Tonight, at least, I will be safe. I will stay in bed, the nursing staff will bring me water and drain the catheter, and tomorrow the social worker will turn on the telephone and television.

And I finally will have the opportunity to present my battered nervous system to a neurologist. Please, God, bless him with an open mind.

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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2 Responses to Tonight on Onondaga Hill

  1. Jack S says:

    Why would anyone give 1-stars to this particular writing?
    or her past postings which were given the same rating standard of one
    You request notices of new writings solely to leave negative reviews. period.
    I bet if checked… we’d all find (for the most part) the same computer and email accounts the same people leaving these same ratings over and over again.
    I don’t think you even read her writings anymore. Something the time-stamps just might show.

    Who am I and why do I care? – Because this is a woman’s blog. Her spot on the internet in which she puts her thoughts her struggles her information for all to see Right Here.
    For anyone who bothers to stop by for a while, she invites us into her world, stories and experiences from her angle and view of this world.
    And yet some are continuing to us this as a way to cause her pain. plain and simple that is what they are doing. Abusing the entire purpose of the rating system to harass and abuse.

    I am going to see what I can do about this problem. WordPress is also not a fan of harassment. it is also fraudulent annoying and cruel.
    Anne I hope tomorrow is a better day for you.. and keep writing.
    I’m sure most of us ignore the star report b/c as no doubt you figured out years ago, they come from a small, small group and not at all close to the majority.
    most likely some offended nurse (and little helper-friends) who’d felt offended somehow – probably ‘outed’ for their lack of compassion and empathy… and so now to he/she keeps proving you right with each singular star notation. ridiculous.

    sleep well tonight, Anne.
    May tomorrow be a better one – and may that Neurologist a genius! : )


    • annecwoodlen says:

      Good to hear from you again, Jack. Blessings on you. I write to try to show people what us poor, sick, people are subjected to. This is what your taxpayer’s money is being spent on; it’s not what you think it is. Get informed; get involved. Change your vote.

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