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.