My child needs minor surgery. A tonsillectomy. Nothing to get too stressed about (maybe a little). Except....
My parents think I should get a second opinion. This doesn't seem like a stupid idea to me. A doctor several years ago told us she should have this surgery at some point. Now her migraine doctor, and the sleep specialist my daughter visited, are saying the same thing, and want us to see a specialist.
Perhaps it's not really necessary to see another specialist. But I'm not morally opposed to it. The worst I could say about it is that it might be unnecessary.
In order to see another specialist, I'm probably going to need my husband's cooperation. Somebody who understands the way my brain works (and he's the only one), and who knows the route and what obstacles I might encounter--one-way roads, parking lots that can't be turned left out of, and so forth. And my husband doesn't want to get another opinion.
I am sick and tired of not being able to go places without someone's help, which is tantamount to having to ask permission.
Without his cooperation, I can't do this thing. And you'd think I could ask my father (my mother doesn't drive), but he often doesn't understand.
I'm trapped. My husband doesn't want to help, and my father isn't going to understand why I need help--he's just going to want me to do it.
Having my parents paying more than half of our household expenses is putting me in a position where I don't feel I can be blunt and say that I need help and if they won't help, I won't do it. And it sucks to need so much help. I already need all this help with money, and then I need help with driving, and I can't fix anything around the house when it breaks down because I don't recognize tools or parts of machinery. On top of that I have to keep asking for help from the government, and no help is forthcoming. Every relationship I have with anybody is colored by my having to repeatedly ask for help and understanding.
I try to explain to people--I don't remember anything I see. I don't recognize my own children.
I've wondered if this is why I've lost my last friend, who was suggesting places we could go that I couldn't go to because I can't drive myself. Maybe that was at least one of the straws on that camel's back. I try not to torture myself with questions--did I fail to recognize her somewhere? Did I fail to see a critical facial expression? Time to go on with my life here.
But it's just like high school--me trying to convince people that I'm having trouble doing things, nobody believing me, trying to convince doctors and the Social Security Administration instead of teachers and guidance counselors.
And this morning there was an article someone had posted on my facebook page: http://letsfeelbetter.com/the-global-genes-project-makes-significant-point-about-rare-disease-awareness-versus-cancer-support/ .
And I thought (not for the first time) that I'd love to live in the world of cancer patients.
I don't know anything about cancer. I've never had it. Please, God, don't give me cancer. I'm not really jealous. Of the cancer. But I'm jealous of the world they live in. A world, where, according to this article,
- -You have a disease
- -You have local support
- -You have national support
- -You have millions of dollars being donated daily to the research of your disease
- -There are millions of resources on a financial, emotional, and educational level at your disposal
- -The stigma associated with your disease is one of bravery, championship, and fight
I can't keep doing this. Trying to explain over and over again what's wrong with me to the same people until they leave because they don't understand why I can't just get a job, or why I can't drive to someone's house, or to a party, or a wedding, or a hospital where someone is sick, or a funeral.
It's already occurred to me that I only know how to get to one hospital, and it's an older one, and if my daughter doesn't have surgery there, I won't be able to take her. I might not get to visit at all. I want to be there for my child. I'm going to have to insist that people watch my other children, and insist that they help me visit my child. Yet another argument that I don't want to have. And with winter coming, I just might get sick and not be able to be there anyway. Maybe we can put it off until summer, when there's a better chance I'll be healthy.
We had hearing tests the other day, and I was glad my husband didn't work that day, so he could drive us. All of my kids passed. And I passed, darn it--by one point. Which means I probably have a fairly serious hearing problem, but I'm one point short of an official diagnosis. I have a Social Security hearing coming up in March now, and no diagnosis of anything, no way of getting a blood test for the pneumonia vaccine that I wasted my time getting....I'd like to get some diagnoses of some of my neurological problems before then. One of their own tests showed I have the visual memory of a seriously retarded person, but that test apparently didn't count for anything.
I am frustrated to the point of refusing to drive myself anywhere I don't already know how to get to and refusing to talk to anybody about any of this. Gee, that reminds me a lot of what I was like in high school.