I am absolutely totally wrecked and don’t know where to turn. I am going around in circles with no way out and don’t know what to do.
I am in enormous pain. First, it was the carbuncle, apparently the result of the hyperglycemia, and the doctor at the Syracuse Community Health Center prescribed doxycycline, 100 mg twice a day for 12 days. I took 100 mg once a day for three days and was so trashed that I couldn’t get out of bed.
Second, the temperature went from 40 degrees to 80 in just a couple days. Most people with immune dysfunction (e.g. lupus, multiple sclerosis) will tell you that that’s just hell for them—we simply cannot adapt to such an enormous change in such a short time. I got worse. CFIDS is a disease that exists inside each cell. Do you know how many cells there are in the human body? Somewhere between 15 and 174 trillion. And every single one of them hurt.
Third, yesterday I got a permanent wave. The chemical stuff she put on my head was so excruciatingly cold that I was in torment. Then the chemicals stayed on my scalp for twenty minutes. How much of an extraordinary stressor do you think that was? If I can’t take four antibiotic pills, what do you think chemicals poured on my scalp did?
By yesterday, all I could do was lie in bed and cry. I’ve got a headache. My shoulder hurts. When I stand up then everything just swooshes down and it feels like my feet are in lead boots and my head gets light and my ears start ringing. I only can stand up for about five minutes before I start gasping for breath. My vision is blurry, and I can’t think straight. I’m easily agitated.
My twice-weekly acupuncture has been reduced to once a week. The doctor has to do three five-hour days of classwork at St. Joe’s—something about computers. Then he has to do the same thing at Upstate. Thirty hours. That’s 120 sick people who don’t get seen in a two-week period, including me.
The homeopathic provider has simply disappeared. About a month and a half ago he told me to keep him updated by email on how I’m doing. He simply stopped responding. I haven’t heard from him. An intermediary called him a couple times and he said he’d call me. He hasn’t.
I’ve got no money left to pay the physical therapist who’s doing the craniosacral thing, so he’s cut his charge almost in half—and cut my appointments from twice a week to twice a month.
I’ve had to stop the Swedish massage because there’s no money.
All I’ve got is Diana, doing a little Swedish, a little lymph, a little craniosacral, Steve doing LCD and chiropractic, and Kate doing psychotherapy.
No physician will listen to me or work with me.
I can’t get a primary care in Adult Medicine at Upstate because I won’t release my records. I won’t release my records because they carry all this psychiatric crap that is untrue, outdated, or just plain wrong. I’d be crazy to let that into a physician’s hands because they immediately dismiss everything said by a “psychiatric patient.” I could tell you stories.
I was told Dr. Perl was an immunologist but now I’m told he’s not. He referred me to neuroimmunologist Dr. Jubelt. Perl’s Fellow said I’d have to wait six months. Perl did the referral for fibromyalgia and CFS; the secretary wouldn’t give me an appointment because Jubelt only accepts M.S. and post-polio. Perl now refuses to say why he insisted on Jubelt, and will not refer me to the other neuroimmunologist.
Perl has referred me to Dr. Allam, a rheumatologist who claims to know something about CFS. I’ve been trying to get an appointment with her since last November. They say I might get an appointment next September.
At Joslin, I was assigned to a Fellow who doesn’t pay attention, can’t think and—with an A1c of 15—referred me to the educator for hypoglycemia. I had found two articles on-line about CFIDS + glucose, published in 2012, but they were so medically technical that I couldn’t understand them. I begged the Fellow and the attending physician to review the literature and was assured they would. As a new patient with a glucose of 570, I was not scheduled to see the doctor again for two months. I think that is inexcusable.
When I next saw the Fellow, she handed me two articles that she had printed off that morning. One was two pages long, from a women’s publication, and undated. The other was published in 2002. She had searched on chronic fatigue, not CFIDS + glucose. And she admitted that she hadn’t read the articles. She made no attempt to learn anything about my condition. Neither did the attending. When the Fellow called in the attending at the second appointment, it was not the same person as at the first appointment. He wanted to start over from scratch. And his English was so poor that I could not understand half of what he said.
Adult Medicine, Rheumatology and the Joslin Clinic wouldn’t work with me, so I called the Medical Director’s office to file a complaint. They forwarded my call to Patient Relations. I spent an extraordinarily long time on the phone with a young man, spelling out the details of my problems with Upstate.
Then I got a call from the nurse manager in rheumatology, wanting me to start from the beginning and repeat everything. I was with someone and couldn’t. She called the next day while I was out at a health care appointment, saying she only would try to call me one more time. She did not call. I tried to make a courtesy call to her, explaining that I was too sick to go through it all again. The phone number she had given me was not hers, but the main number for the entire building. I was transferred twice, kept on hold for five minutes, then they refused to let my call through unless I went through the whole name-DOB-etcetera business, even though I was returning the nurse manager’s call.
You tell me: What am I supposed to do next? Traditional medicine won’t help me, I can’t afford alternative treatments, and I am suffering.
What am I supposed to do?