Well, my husband was able to take me to the 'consultative exam'--the appointment with a doctor chosen by Social Security.
I read a bit about these exams online--enough to discover that when you attend a consultative exam, the decision has already been made, and it wasn't in your favor. This exam is basically just a formality.
There are websites that tell you how to dress and what to say and what not to say. It's just like going to court.
It's almost funny. I have my blood pressure taken, my hand strength tested, and my eyes checked, all of which is very nice, but none of which has anything to do with anything that is actually wrong with me. The doctor does listen to my chest, but this is of course meaningless since I am not having an asthma attack today. They can't count any medications or any symptoms unless I am taking or having them today. (I don't even want to think about all the times I've seen doctors when I was actually having symptoms, only to be told that there wasn't really anything wrong with me.)
My husband almost loses his temper, and I don't blame him. He's not as used to being treated like a low-life as I am. No, that's really too harsh--they were pretty nice to me today. But it's as if I'm on trial. I have to prove my innocence. I have been accused of being a lazy lying malingerer, and now I'm supposed to prove that I'm not. But none of the evidence in my favor counts for me. All the blood tests in the past, the pneumonia vaccine that didn't take--these don't count. And I'm too independent, as is my husband, to blindly put faith in the professionals and trust that everything will be fine. It's no good--I've known too many professionals. I've dealt with too many remedial teachers and social workers. I've been treated like crap too many times. I don't trust anybody.
The test that showed prosopagnosia might count, but the test for CAPD doesn't, because that was when I was still in school and the records are gone.
I don't have topographical agnosia because I've never been diagnosed. How did I dare to look up all those neurological conditions on the internet ten years ago. Just because people thought I was retarded, and I couldn't function in the world, and nobody could tell me why. All three conditions (and autism) are related--read enough about one condition and you'll stumble on the other two. But what business did I have trying to help myself out of desperation?
But none of those neurological problems are real until somebody with a piece of paper giving them permission to mete out diagnoses says they are real.
And the disease isn't real until some doctor contradicts the last doctor who said it wasn't, after diagnosing me and treating me for years.
And they're not interested in new evidence. The simple blood test that would show a low antibody count is never done. Another pneumonia vaccine isn't given. And dismay is expressed that I would get pills over the internet to treat myself. I try to explain that I don't have a choice, not when my husband has been laid off and I'm already asking relatives for money to pay the utility bills. I just can't afford medical care. I try to explain why I need to be treated for this disease, even if I have to do it myself. I try to explain that I can't get the IVIG treatment because it costs more than my husband makes. More trying to help myself. More desperation. I actually like being able to spend as much time as possible out of The Chair. I don't want my children to remember a mother who could never go upstairs because she was never well enough, who spent all of her time in The Chair.
One day I was going to die in The Chair. That's where it was heading before I got diagnosed.
I can't get help from any government agency. I can't work. The proofreading work-at-home business doesn't have enough clients, and no more clients seem to be forthcoming. I can't get a job. My husband is only working part-time and there is nothing I can do to help.
The doctor didn't make any suggestions as to what I can do about this situation. That's because he's only human, and there is no solution to this. I am going to have to try to accept that this is the way it is and it's never going to change. It's hard to even say that.
It occurs to me that Captain Kirk would never have had to say it. But he didn't go through 30+ years of this. It's as if I've committed a sin by being the way I am, and every time it goes to court I'm found guilty again. People in the community see me, and some believe I'm guilty. Every time I meet anyone, I have to wonder when they're going to decide, and what the decision will be.
I am going to have to try to make the most out of my life the way it is. Focus on playing the piano and taking care of the house and enjoying the lovely weather we're having and reading books and going out occasionally with my children. And I have to stop worrying about what will happen if we can't pay our bills. All I can do is juggle the overdue notices and call my parents for cash when somebody threatens to shut something off or take it back. I'm finished trying to get help or get a job now. It's gotten to the point where even other people think I should have given up some time ago.
And now I can wait and see if I have nightmares about hospitals tonight, or public school.
That doctor really wasn't a bad guy. I think he might actually have liked to help. But I think it would be really nice if I never had to see another doctor again as long as I live.
I'm going to go play the piano some more.
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