Good morning, peeps.
The way it works for me and CFIDS is that the night after a therapeutic massage, I sleep terribly. Thursday Brian came and gave me a massage. He’s a part-time massage therapist in the Employee Health Office. He was willing to treat a patient but Crouse, with its $366 million budget, could not figure out a way to pay him, so I’m paying him out of my mother’s trust fund, which is about as small as what you’d spend on entertainment in a year.
Hospital rooms are set up for giving pills and CPR, not massages, and hospital rooms are as rigid as the hospital hierarchy, so we had some trouble getting Brian, the bed and me all positioned right, but we did. We talked for the first half hour, babbling away at our discovery of mutual friends, and sharing histories. Massages are incredibly intimate—one person gets naked and the other person lays hands on—so you need to see if there is a basis for bonding. Among other things, Brian is a Libra and I’m a Sagittarius, which is good.
The second half hour, I just started to zone out. Brian had brought a great big tube of some Arnica and ivy stuff and my very dry skin was just sucking it up. I have had dry skin all my life; my very first appointment with a medical specialist was when my mom dragged me to a dermatologist when I was twelve.
He asked her how often I got a bath. She said “every day.” He said, “Not so often. Let her get dirty. Won’t hurt her.” Back in the day, doctors said stuff like that. Instead of prescribing expensive goo, you just worked a little better with nature. So we stopped washing the natural oils off my skin so often.
A couple years ago, I went to the immunologist with Asperger’s—at least, I hope he has Asperger’s. If he doesn’t then he simply is a son-of-a-bitch. He had the resident interview me, then he interviewed the resident. He asked the resident if I had dry skin, which really surprised me. Who’d a thunk that dry skin would be indicative of an immune problem? Well, the resident hadn’t asked me that so he flipped a coin and told the immunologist that I didn’t have dry skin.
I was sitting in a small treatment room, trying to be dutiful, with two male medical doctors going eyeball to eyeball with each other and almost completely ignoring me. I didn’t open my mouth. About fifteen years ago, when nobody knew what was wrong with me and I was being shunted from one specialist to another, I was getting totally screwed over by the M.D.’s so my Ph.D. started going to medical appointments with me.
And the M.D.s started treating me with more respect, stopped bullying me, paid attention to my questions, and generally self-imposed better boundaries on themselves. And what did my Ph.D. do to accomplish this? After the initial introductions, he’d sit in the corner and play games on his Blackberry. It wasn’t about what he did; it was about who he was: another male—and apparently one who had this woman under his protection.
An awful lot of what goes on in the medical community is really primal, and no woman should go to see a male doctor without taking another male along. Basically, you can offer the parking lot attendant ten bucks to go into the doctor’s office with you, and that’ll do. “Have penis; will accompany”—some guy could hang around the physicians’ office building lobby and make a bundle with that business card.
So I’m going back to see the immunologist again on Monday. I couldn’t find a guy to go with me but I’ve got the next best thing: a girlfriend with balls. And I will go in with written requests for blood work, etc. You see, the problem at SUNY Upstate Medical Center is that in order for a physician to do research there, he also has to teach and do clinical work. With Asperger’s you get a guy who’s brilliant but has the bedside manner of a rabid raccoon: have teeth, will bite.
So doctors with zero people skills are forced into clinical work. Why? Why can’t we just let people do what they do best and not do at all what they do terribly?
Well, anyway, after the massage I had a gentle few hours, then a lousy night: two hours of good sleep, three hours of bad sleep, three hours of no sleep. Totally sucky day yesterday. Dr. Ghaly and I figured out decades ago that my days are only as good as my nights. A bad night is always followed by a bad day.
But if massage always is followed by a bad night (“Postexertional neuroimmune exhaustion means you experience unexplained and disabling fatigue after simple activities. There is a delay of hours to days between the effort and the exhaustion . . .”), the next night is always really good. Last night I slept eight hours with only minor awakenings. Feeling much quieter this morning. One is thankful for the quiet pools, however few and far between.
Another massage expected later today.