This morning I learned that in November 2013 a palliative-care nurse practitioner testified at a hearing that with my glucose level as high as it was, I would be dead within six months.
Here I still am.
I’ve been counted dead so many times that a friend sent me a cartoon: cat standing at the heavenly gates, waiting while St. Peter punches another hole in the cat’s nine-lives card.
My glucose, which should be below 110, has been over 350 for four years, and over 500 for a couple of years. The medical expectation would be that my kidneys would be failing—they aren’t. In fact, without pharmaceuticals and with homeopathy they are getting better. My eyesight should be failing. In fact, since I got off the oxycodone it’s getting better. By now they should have started cutting off parts of me—toes, feet, legs. Nope, still got all my parts.
Every so often my friendly doctor asks, “Why aren’t they studying you? Why aren’t they trying to figure out why you are doing so well despite your high glucose?” I think that’s a good question. I think the medical profession only can see sickness, not health.
Anyway, did I tell you that the United States has again changed the name of my major malady? First, they called it chronic fatigue syndrome (CFS), which doesn’t begin to suggest how serious it is. Then they called it chronic fatigue immune dysfunction syndrome (CFIDS), which is my preference because it puts the immune thing right out there where people—even physician people—have to see it.
Then an international consortium of physicians said, “No, no, it’s myalgic encephalomyelitis.” It’s an autoimmune disease that affects the nervous system and the immune system, and is probably caused by a virus gravitating to the brain. Um, yeah, a strep infection when I was 14.
Last week NPR reported “a 15-member panel of the Institute of Medicine, an independent government advisory body with a lot of clout” has decided to call it “systemic exertion intolerance disease, or SEID for short.” The characteristics are:
• “Profound fatigue lasting at least six months;
• “Total exhaustion after even minor physical or mental exertion that patients sometimes describe as a “crash” and is known medically as post-exertional malaise;
• “Unrefreshing sleep;
• “Cognitive impairment (aka “brain fog”) or a worsening of symptoms upon standing.”
Yeah, I’ve got “profound fatigue” lasting, um, let’s see, 54 years. When I was in 12th grade I used to take a nap every day when I got home from school. For the last 11 years I’ve needed to use a power wheelchair—is that fatigue that is “profound” enough to qualify?
“Total exhaustion . . . patients describe as a ‘crash’ . . .” Well, let me tell you about it. Last week I went to a hearing at City Hall regarding Centro and Call-a-Bus. The bus couldn’t drop me at City Hall’s wheelchair accessible entrance because it was on the wrong side. The temperature was, as one news anchor put it, “a blistering 2 degrees.” The woman in the wheelchair parked in the aisle in front of me wouldn’t get out of the way so I could speak. Channel 9 News, the Post-Standard and NPR local news all recorded quotes from my testimony. I found myself accidentally sitting in front of Centro’s Executive Director Frank Kobliski.
I gotta tell you this one: Frank and I got to be friends—I thought—after I went to him and explained that Call-a-Bus was substandard. Frank and I exchanged emails and phone calls. We had meetings in his office and at my home. He wanted to get me in with his wife’s cardiologist. We worked together to upgrade Call-a-Bus. When he wouldn’t spend the money necessary to get the job done right, I filed a complaint with the FTA Office of Civil Rights and got Centro investigated.
Meanwhile, I had pressured Kobliski into recreating Centro’s accessibility board, which is mandatory under the Americans with Disabilities Act and which Centro had discontinued. I was the only one on the board who actually used Call-a-Bus as my primary mode of transportation. All the other “stakeholders” (as defined by Centro) on the board were talking about plans for 2018 and the design for a new grant application.
I was talking about the old man on the Southside who would leave his weekly meeting at 9:00 p.m. and then have to sit on an upturned bucket in a garage in below-freezing weather and wait an hour for Call-a-Bus because CAB wouldn’t play by the rules and pick him up after he got out of the meeting. I finally got mad, quit the board, and went to the newspaper.
Frank Kobliski never spoke to me again.
So there I was in the Common Council room at City Hall on Thursday night and I moved across the center aisle to get out of the way and found myself sitting in front of Frank. Well, I just grinned up at him. I mean, really—what’s he going to do about it? And he totally ignored me—looked over my head and refused to acknowledge that I existed. So I continued to sit there and grin at him.
After while I had to move to let someone else out and I ended up sitting next to Frank. And I kept on grinning. I hoped somebody, somewhere was taking a picture of us. The man is such a hypocrite. Among other things, he dyes his hair. I have this on good authority from his special assistant Betty Petrie. One day at Centro headquarters we were both in the restroom when she decided to go all girlish and confidential and tell that he dyes his hair.
I don’t know whether I was more shocked that he did it, or that she was so disloyal as to tell me.
Anyway, after I got home, to bed, and to sleep, my (absent) neighbor’s smoke alarm sounded for 90 minutes and I was awake half the night. Centro and the smoke alarm caused “total exhaustion . . . that patients sometimes describe as a ‘crash’ and is known medically as post-exertional malaise,” so I’ve been wrecked for nearly a week.