See also “Behind the Locked Doors of Inpatient Psychiatry.” Today at Hutchings Psychiatric Center we meet Dr. Jane Kou for the first time. http://behindthelockeddoors.wordpress.com/2010/11/24/hutchings-psychiatric-center-notes-from-a-hospitalization-part-i/
First, to the person who found me while searching for “emergency food availability for celiac patients with no money”—there is no such thing. Buy gluten-free bread with what little money you have, then substitute potatoes or rice for other bread and pasta. Sometimes it’s a little weird—spaghetti sauce over rice?—but at least it’s healthy. Hamburger stroganoff can just as easily be served over potatoes as over noodles. And go with brown rice, which is healthier than white rice.
Here’s reality: gluten-free food costs four to eight times as much as regular food. A loaf of white bread can be got for 99 cents; a loaf of gluten-free costs $4.99. Despite the extreme difference in cost, you cannot get extra Food Stamps to cover the basics.
My repeated queries to the Food Stamp people have always been met with the Jenny Craig argument: we won’t pay for Jenny Craig or any other special situation. This argument is ridiculous. Jenny Craig and other weight-loss plans are for people who won’t get a grip on their life and learn self-discipline. Medicare and/or Medicaid will pay for dieticians and physical therapists who will teach you what to eat and how to exercise.
Weight-loss is not a parallel to celiac disease. If a person with celiac disease eats wheat (or oats, rye, graham—anything containing the protein gluten) then the person will get sick. By eating gluten-free we are trying to prevent illness! And the bureaucracy won’t help us by paying for food that won’t make us sick.
What needs to be done is a major advocacy push in the U.S. Dept. of Agriculture, which makes policy about Food Stamps. Good luck with that.
Home Health Aides
My intercom buzzed: it was the young woman coming to interview for a position as a home health aide. I told her I was in apartment 823 and she asked if she should take the elevator. I told her yes. I waited. She didn’t show up. The intercom buzzed again. She asked what floor apartment 823 was on.
After she arrived in my apartment, I asked her how long she’d worked for the agency. She counted on her fingers and told me eight months.
When I asked her about her cooking skills, she said, “Oh, microwave? Yeah, sure, I can do that. You like Italian? I can cook Italian.”
I explained that my diet is gluten-free because I have celiac disease, no-sugar-added because I have diabetes, no caffeine because of my kidney disease, low sodium because of my high blood pressure, low fat because I’m overweight, and low budget because I’m poor.
She said, “Well, what, then?”
I said, “We cook from scratch—potatoes, carrots, butter, milk.” She looked horrified.
This is the reality of the pool of young women from whom we have to draw for home health aides.
Aides are paid $10 an hour by my agency, indirectly from Medicaid. Physicians bill about $60 for ten minutes, or $360 an hour. If your aide and your physician both died, which would you miss first? My aides give me showers, wash dishes, cook, do the laundry, change the sheets and do the grocery shopping. The people who are most necessary for the fundamentals of living are the least well-paid, and that’s a sin. Our value system is upside-down. We are paying for education retroactively. The justification for paying physicians the big bucks is that they went to school for eleven years. Aides are girls who quit high school.
They wrote: “We, therefore, the Representatives of the united States of America, in General Congress, Assembled, appealing to the Supreme Judge of the world for the rectitude of our intentions, do, in the Name, and by Authority of the good People of these Colonies, solemnly publish and declare, That these united Colonies are, and of Right ought to be Free and Independent States . . . and that as Free and Independent States, they have full Power to levy War, conclude Peace, contract Alliances, establish Commerce, and to do all other Acts and Things which Independent States may of right do. — And for the support of this Declaration, with a firm reliance on the protection of Divine Providence, we mutually pledge to each other our Lives, our Fortunes, and our sacred Honor.” And then fifty-six men stepped up one at a time and affixed their signatures to their pledge.
With God at their back, they declared freedom and pledged to each other their lives, their money and their honor to support it.
Today a Time Warner man stood in my living room, handed me a little black box with a screen and a plastic pen, and told me to sign it. Told me to put my name on a gizmo that didn’t even show my signature as I wrote it. He laughed, turned his laptop around, and said, “See? It appears here.” Indeed, my signature was appearing on some contract on his screen.
I was dutifully signing a document that I hadn’t seen or read. I was giving my signature as pledge to a contract about which I knew nothing. How many times in a month do you do this? Somebody sticks something in your face and you sign it without thinking about the fact they you’ve just accepted legal responsibility for something or other.
Don’t you hear Judge Judy screaming at you, “You did what?! You signed it without reading it?! What kind of idiot are you?!”
An American kind, born of the bureaucracy where everybody wants to cover their ass and you go along with it because you’re too lazy to stand up to it.
Every time a Medicaid or Medicare patient goes to the doctor, a clerk slides papers across the counter and says, “Sign here, here and here.” And we do sign—sign because we’re told to without knowing what we’re signing.
When are you going to start reading and stop signing? When are you going to realize that your signature is your pledge of your life, your money and your honor, and you don’t want to squander it on un-read documents?