Last edited 2015 December 24
This is my first attempt at blogging. It feels a lot like the first time I tried to play tennis. I know it’s not going to be good, but I assume that I’ll improve with practice. Actually, I never did learn to play tennis, although I learned enough to enjoy watching other people play it. I’m keeping my fingers crossed that my prior writing experience will help me out here.
The basics are easy: female, born 1959, 56 as of this writing. Born in USA, never traveled outside this country. Never married, live alone with my cat. Hetero but celibate by circumstance. Endlessly curious about nearly everything. Book and music junkie, no favorite genres of either. I tend to like the best of everything, e.g. I’m not particularly crazy about bluegrass but my favorite band is Alison Krauss and Union Station. I’m not particularly crazy about romantic fiction, but my favorite author is Georgette Heyer.
Major subjects: I really don’t like talking about some of these, but you’ll never understand me without them. What worries me is that people might mistake the plain facts as a plea for sympathy. Sympathy is the last thing I need, believe me. Okay, I’m going to plunge right in and get the worst of it over with.
My health
I have autoimmune autonomic neuropathy. If you’re feeling masochistic, try saying that three times real fast.
You can Google this, but it won’t tell you a lot. That’s because we don’t know much about the autonomic nervous system, and even less about what happens when it doesn’t behave itself. We know more about the immune system, but we have a long way to go. From my personal perspective, this lack of understanding adds up to two words: guinea pig.
In plain language, the easiest way to think about the autonomic nervous system is to replace the word “autonomic” with the word “automatic.” It’s a network of nerves leading from the spine out to the rest of you, the exit ramps of the brain’s silent information highway that tells your body to do all the stuff that you aren’t consciously aware of ordering it to do. Stuff like heartbeat, blood pressure control, temperature control, sleep, digestion, hormone production, pain sensation, and a whole slew of other stuff. In my case, my immune system is attempting to edit all that information, and it’s a really lousy editor.
The worst problems are my heartbeat, which is too slow and too weak, and my blood pressure, which is too low. I frequently get a zero reading on a blood pressure cuff. I also have constant pain at various points in my digestive tract and in my muscles. I have muscle seizures that look, apparently, something like grand mal epileptic seizures, but I don’t have epilepsy. I frequently pass out during or after a severe seizure, so that I don’t realize that I’ve had one until I see my pillows scattered around the room and my cat hiding under a chair.
I take a double-digit number of prescriptions from three different pharmacies. I used to know the actual number of drugs that I take, but I gave up on that a couple of years ago. I don’t take anything I don’t need, and all my prescriptions are written by my neurologist. It’s safer to have a single source for everything so that there’s no confusion about what might react adversely with what, and so there’s no duplication.
The most important part of my treatment is ivig infusions. Every three weeks I take a drug called Gammunex, which consists of human antibodies in gamma globulin. It has helped a lot.
High Desert 