But really, let’s do talk about “the scientific community.”
The immunologist ordered his tests. The results included:
Complement Tot Activity 60 – 144 CAE Units 177
CD8 % SUPPRES/CYTOTOXIC 14 – 37 % 12
CD4/CD8 Ratio 1.0 – 4.0 5.0
IgM 40 – 230 mg/dL 31
His comment was “they do not reflect any major change in you [sic] immune system.” Well, how about that? Twenty-five percent above normal but no matter. Should be under 144 but is 177—forget about it. Why do laboratories establish normal ranges if doctors ignore them? So the immunologist ordered referrals to primary care, endocrinology, rheumatology and neuroimmunology.
I waited 25 days for the primary care appointment. It was with a resident who was a little Indian woman, who was solemn and diligent, and who brought in the attending, who was a big American male. He said he had to have my records from the previous hospital. The records contain five diagnoses that are not true. I would have to be a fool or insane to provide false information. He said he needs it to “treat” me; that’s how he works. What “treat?” He can’t treat me because I can’t take his drugs, so why was he bullying and berating me?
The resident checked my blood sugar. It was 451. She informed me that I absolutely had to take insulin. Insulin makes me suicidal. What is wrong with this child that when a patient says she can’t take drugs, the resident tells her to do it anyway? ‘If you give this patient this drug then it will kill her.’ No, no, no—this is the drug we give everybody therefore she must take it. ‘Did you hear her say that it would kill her?’ No, no, no—does not compute; does not compute; no room for human differences; I only know what I’m taught.
So then I go to see the psychiatrist whom I found all by myself in a couple of weeks. He not only is a psychiatrist but also he has a doctorate in pharmacology. I ask him why insulin makes me suicidal. He talks about rebound from antidepressants, asks me about CFIDS, takes notes, and understands completely that I can’t talk to any medical doctor about the emotional distress caused by pharmaceuticals. He knows his colleagues and knows they can’t tolerate a patient’s emotional symptoms, and they go bat-shit at the mention of suicide. He invites me to come back in a couple weeks; he has access to impressive research computers.
The endocrinology appointment is scheduled for a month and a half after the immunologist’s referral. The rheumatology and neuroimmunology appointments, after five weeks, still haven’t been scheduled. The immunologist will see me again in six months.
Meanwhile, what about the apartment needing to be cleaned, the rug shampooed and my furniture moved back in? The apartment was empty for eight months while I was busy not dying. It has dust, cobwebs, dead bugs and, um, dead fruit flies inside the refrigerator. Go figure. And then there was the fire in the apartment three doors down the hall, which put a layer of soot over everything, including the toilet paper roller. And created a paste of soot and water that the firemen and I ground into the carpet. And I am living with a hospital bed, a power wheelchair and a manual wheelchair and no other furniture because it was removed to storage back-along when I was sent out to die.
So the apartment needs to be cleaned, the carpet needs to be shampooed and the furniture needs to moved back in. The state trooper who tried to figure out why the Iroquois Nursing Home wouldn’t readmit me has offered to get some of his fellow troopers and help with the moving.
I left the hospital on Dec. 27. The next day, Friday, county Adult Protective Services (APS) called my Power of Attorney. On Monday I called APS; they called county Long Term Care. The following Friday they sent a woman to sit for two hours and takes notes about my condition, and to inspect my apartment. Don’t you just hate it when government bureaucrats come nosing around in your home? O-o-oh, you are healthy enough to work and therefore have enough money to take care of yourself and keep government bureaucrats outside your door. Um-hum. Well, I’m poor and this is the way it is: intrusive, demeaning and humiliating.
So the following Monday the APS paper-pusher informs me that she was just triage; she doesn’t actually do anything, but she has forwarded my case to a worker who should call me within 24 hours. Except that he doesn’t. Nor does he return my phone calls. I send emails and leave phone messages—one for his boss—and four days later he calls me, all snippy and snarly: what do I want? Ah, to have my apartment cleaned and my furniture brought back? He says he will call their cleaning and moving company, who will call me to schedule an assessment appointment, and then to do the cleaning and moving. Which I will have to pay for. My Social Security income is $821 a month. Go figure how I’m going to absorb this cost on an income that is below the poverty level.
In the Year of the Beast, I followed doctor’s orders and prepared to die. Then my neighbor apparently fell asleep on the couch with a lit cigarette. Now, I am “living” in a dirty, empty apartment and, oh yes, I am suffering from smoke inhalation and have a big spot on my left lung. Now, I—presumably like you—had this image of Adult Protective Services rushing in with a big fix when they have knowledge of a citizen who is old and sick and poor and living in dirt without furniture.
Doesn’t happen. What does happen is that a nosy lady gets paid for about four hours to inspect and write reports, and a guy does nothing, and they spend two weeks doing it while I’m lying in bed. I don’t get up because I can’t breathe and walk at the same time. Did you know that this is how Adult Protective Services works? Does it offend you? Well, why don’t you call your county legislator? O-o-oh, four of the legislators are Democrats and the other thirteen are Republicans. I am getting exactly what the Republicans want me to have: nothing.
So how did you vote last time? Did you vote to help me or leave me helpless?