July 27 Diagnose Connection Problem
One of the most horrifying moments in my late adult life comes when I power up the computer, hit the “e” and see “Diagnose Connection Problem.” I cannot get on the Internet. I need to! Gotta talk to people, tell them what’s up: I’m in St. Joseph’s Hospital. So I call Stevie, my trustee, who lodged me at the Genesee Grande hotel and fiddled my computer until it got the Internet, and he says to me, “Well, does the hospital have Internet access?”
And I say, “Huh?”
And he says, “I’ll be up after work.”
So, yes, here I am in the hospital. It all started last week when the temperature hit 101 degrees and my air conditioner broke down. It was 92 degrees in my apartment for an untold number of days and nights, and it wiped me out. According to the best medical minds in the county (Dr. Ghaly’s and mine), when Dr. Rich poisoned me with unmonitored lithium, it damaged my immune system. The symptomatology is immune dysfunction and I’ve repeatedly been worked up for multiple sclerosis, lupus and scleroderma but I don’t fit the profile.
What I have is drug damage. Doctors do not study drug damage. Pharmaceutical companies hide the negative results of drug studies, so there you go. Dr. Ghaly and I see the signs and symptoms but the rheumatologists and immunologists don’t want to go there. So I’m awful sick because the immune system carries the stress load and, believe me, 92 degrees is a heck of a stress load. I’m only cleared for 78 degrees. . .
July 28 The good Lord, in his infinite wisdom, gave us two things to heal our ills: sleep and food. The hospital, in its finite ignorance, starts by taking those two things away.
I was in the Emergency Department for eight hours. Since I was not sick enough to lose consciousness, I got no sleep. Then I was transferred to Observation, where I got three hours sleep. The next day I was moved to Med/Surg; that night I slept two hours and then was awakened for vital signs. I did not go back to sleep for two hours, then slept four hours. Last night I went to sleep at 9:15 p.m.—and my doctor came to see me at 10:10 p.m. “You want to talk? You want to talk?” No—I want to sleep!
Sleep knits up the raveled sleeve of care. Deep sleep is where your body shuts down so the repair crew can go to work. One theory about fibromyalgia is that the pain comes from non-restorative sleep which prevents the body from healing microscope tears in muscles. If you don’t sleep, you don’t heal. If you go to the hospital, you don’t sleep, therefore you don’t heal. . .
July 29 In the past week I have spent three days at an upscale hotel, one day at home, and three days in the hospital. This gives me about four thousand stories to tell. Ah, where to start; where to start?
The hotel cost about $200 a day; the hospital costs about $1200. I paid for the hotel; you—the taxpayers, via Medicare and Medicaid—have paid for my lovely little sojourn in the hospital. So here’s one observation: in the hotel, things got done quickly and they got done right. In the hospital—well, let me just give you the most recent example. . .
August 5 I feel splendid! It is 6:30 in the morning. I have gotten up, done all my own clean-up activities and a couple exercises, and have just requested an Accucheck, two juices, one coffee and a pitcher of ice. Time to rehydrate. And the cause of all this splendor? Last night before supper my glucose was 475; after supper I got insulin; at bedtime, my glucose was 254; this morning it’s 271. There’s more to healing than a good night’s sleep. . .
August 5 I have just had a too-long conversation with a dietician who is easily the most abrasive person I’ve met in ten days in the hospital. I try to explain this to the nurse and she is nodding, saying she’s glad I feel good about it. The nurse doesn’t know what “abrasive” means and thinks I’m saying “embrasive.” Hospitals cause insanity.
I requested to see a dietician sometime after breakfast tomorrow. I have diabetes mellitus and am on a regular diet wherein I call the Dietary Department every morning and order the next three meals. I wanted to collect a day’s worth of menus from my meal trays then have a professional look at them and tell me if I’m making good choices. If I’m not, then I’ll go back on the diabetic diet. Is this not a reasonable plan? Do you understand it? Do you think that it should be easy to execute?
The dietician arrived after lunch today. She plowed headfirst into the room, shoved my roses aside on the windowsill, plunked her papers down and announced that she remembers me from the numerous times I’ve been here before. I reply that I haven’t been here in ten years. She says she’s been here eleven years. And she came today because she won’t be here tomorrow. I don’t need her today; I don’t want her today; I’m not ready for her today; I did not ask for her today. No matter, she came today.
In a severely chastising tone, she asks me how many times I’ve been over the diabetic menu planning thing. How many years ago?! I bloody well don’t care if it was fifteen minutes ago. If a person with diabetes wants a professional conference about diet, s/he should get it. Ah, but actually –the government doesn’t want you to have it. This is to say that your neighbors, who voted in the government, don’t want you to have it. If you eat the wrong things and get sick then they will pay unlimited amounts of money to make you better. If, instead, you want to eat the right things and not get sick, they will not help you figure it out.
When I was in the hospital ten years ago I worked with St. Joseph’s dietician(s) to very little avail. After I stopped taking drugs then Stevie the Wonderful got me hooked up with a dietician in Upstate University Hospital’s outpatient medicine department. She and I worked together for maybe a year. I wanted appointments twice a month but couldn’t get them. Anyway, she answered all my questions and taught me a lot. It was sort of Introduction to Diabetic Meal Planning. Then she retired, and I worked the program.
A couple years later I fought long and hard to get a new dietician; I was ready for Intermediate Diabetic Meal Planning. (Oops, I forgot. Before the Upstate Medicine Dept. dietician, I went to Upstate’s Joslin Clinic, which is a diabetic clinic. I had celiac disease, that is, I couldn’t eat wheat, and I had a glucose level of 54, which is a very bad thing. One has a marked tendency to pass out or, in my case, fall into bed, often with a pretty delicious hunk of a guy with whom I had no energy to do anything. Sheesh!
(When I found out that the problem was that my glucose level was very low, I called the doctor. He said, “Eat more complex carbohydrates. Oh, you have celiac disease—I don’t know what to tell you.” . . .