I went to my medical massage therapist this afternoon. After about twenty minutes of silent massage, I asked her what her assessment was of me. She replied, “Grief. Despair. Mourning. Fear.”
I replied, “No, you’re supposed to say something like ‘Your lymph glands are . . .’ or ‘There’s tension around the fifth cervical vertebra . . .’ or something.”
She said, “I can only say what I’m getting.”
And she’s getting it right; Jesus God, is she getting it right.
I am in some kind of almighty psychic pain consequent to physical damage and there’s nothing the doctors can do about it. Here’s what’s wrong with Annie, in brief:
- Severe unstable obstructive sleep apnea; auto BiPAP.
- Nephrogenic diabetes insipidus, GFR 45, 24-hr urine about 6 liters; indwelling catheter.
- Diabetes mellitus, type 2, uncontrolled (without insulin, blood sugar is around 350).
- Immune dysfunction, type unknown, probably the result of 7 years of unmonitored lithium.
a. Chronic fatigue syndrome; hospital bed, electric wheelchair.
i. Depression and suicidal ideation.
b. Hypersensitivity to all medications; typically, after a few days, results in debilitating fatigue, shortness of breath (pulmonary fibrosis) and suicidality. No medications can be tolerated for major diabetes insipidus or diabetes mellitus, or minor cardiac problems and urinary tract infections.
Can you imagine that? Can you imagine not being able to take any drugs for anything? If I take antidepressants or insulin or diuretics or antibiotics, I become suicidal. This is probably because I took antidepressants every day for twenty-six years. Antidepressants can make you suicidal; mine did: I attempted suicide a dozen times, ending up on life support for a month. Apparently the antidepressants laid down a track whereby now any drug causes suicidality.
So what do we do about it? I mean, what do I do about it? Nobody else is like me—at least not anybody I’ve ever heard of. I can’t take the insulin to bring down the glucose level and the high glucose level messes up my mind so badly that I’m terribly depressed—and if I take antidepressants then I will kill myself. You see the problem?
And will you all kindly NOT write to tell me about your wonder diet that cures diabetes? I took Glucophage in the 1990’s until I reacted to it. Then I went to a nutritionist and got a basic education on a good diet. Later, I went to another nutritionist for sort of graduate level work on diet, then I went for post-graduate work. Using nothing but diet, I kept my blood sugar down to a healthy level for many years. I exercised to the extent that my chronic fatigue would tolerate. By 2005, I could walk a mile on a good day. Then I got older.
The older you get, the more the parts wear out and break down. I tried cinnamon; didn’t work. Can’t take nutrients for the same reason I can’t take drugs: hypersensitivity leads to intolerance which causes bad reactions. I was a vegan for eight months but it proved too stressful. When I went back to a with-meat diet, my blood sugar went down.
Last year my doctor referred me to Hospice; Hospice wouldn’t take me—I wasn’t within six months of dying. Francis House wouldn’t take me—no beds. You have to be down to about the last two weeks of life in order to get a bed there.
I went to the hospital and told the doctor to go ahead and try insulin. He did. On the second or third day, it appeared that I’d had a stroke. I hadn’t, but it was certainly an indication of how badly my immune system reacts to drugs. I was discharged to a nursing home on 40 units of insulin.
You cannot imagine how bad a bad nursing home is. You get a bare room with the kind of bed you might expect in summer camp—spare metal frame, no box springs—just the single spring, and a thin mattress. The homeless shelter has better beds, not to mention the hospital. St. Joseph’s Hospital spent more than a million dollars on new beds at $3000 per bed. Hospitals go Cadillac while nursing homes are Volkswagen.
So the nursing home kicked me out—actually, told me if I didn’t leave then they’d call the police. My roommate and I had had our call bells on for 41 minutes before they were answered. My roommate’s daughter, who is a nurse, had already filed a complaint with the NYS Dept. of Health but they said everything was okay as far as they were concerned.
I am sure—no, I’m not sure of anything, but I do believe that there are good nursing homes. Problem is, the good ones are filled up with people who have good insurance and/or money. I’m poor and on Medicaid. What that means is that I cannot stay in the hospital waiting for a good nursing home bed to open up. Poor people have to take the first available bed—which is always in some place nobody in their right mind would want to be—and can be fifty or more miles away from your home. That’s right, folks: because I am poor, I have to accept a nursing home that is miles away from everybody I know.
So I went home. I managed. I coped. And I took 40 units of insulin every day. And life got a whole lot better. But after six weeks, I reacted to the insulin. When I say I “reacted,” what I mean is that I got debilitating fatigue. “Debilitating” fatigue means being so tired that when I get thirsty then I don’t get out of bed to get a drink—keeping in mind that I live alone and my kidney disease is wholly committed to dehydrating me. After the fatigue comes “shortness of breath on exertion.” What that means is that putting on my socks and shoes leaves me gasping. And then I get suicidal. You’d be surprised how fast you stop taking medicine when it makes you want to kill yourself.