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I'm back from the hospital!

What? You want details? )
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I've been disabled all my life. I have not always known why. I don't mean in that, "Why me, Lord?" I mean I didn't have a diagnosis. Not for lack of trying, especially in the beginning. I went through all kinds of tests and back then doctor's were very... let's say "creative" in testing nerves and muscles. No MRI's then either. A test called the nerve conductivity test, takes a special place in my nightmares to this day. Add to this the fact that the hospital we could afford was a teaching hospital. I didn't visit my doctor once without a gang of student doctors poking and prodding me without so much as a how do you do. Then there were all the conversations about my medical health being had all around me, but no one actually talking to me. All of them assuming that I couldn't follow the conversation when I always could. All these things made the medical profession difficult for me to deal with. It's taken a while and to be honest, some big changes in how medical staff are trained to deal with patients to make it even possible for me to have things like a regular doctor.

So my relationship with healthcare is not good and I have largely avoided hospitals including neuro-muscular clinics that might know a little bit more about my disability than a general practitioner. After my pneumonia four or five years ago. Concerns about how my disability was progressing started getting more important. And with a lot of internal struggle I finally got myself to the MD/ALS clinic at Stanford to see what they could tell me. I dreaded it. I was pretty sure there was no good news coming from the clinic, but I am a grown up (sort of) and feel pretty good about this step.

I went to the clinic once and did all right. The clinic doctor asked me whether I wanted to get the genetic test to confirm my diagnosis. I'm old enough that when I got diagnosed there was not a test. Diagnosis was largely a collection of symptoms that suggested I might have this or that disability. I'd been given a diagnosis at 16 but had really done nothing about getting more information. So I said sure let's get the test. They took my blood and I just got a phone call from the clinic a day or two ago. In the time between taking the blood and getting the results, I did feel odd. Not worried or anything. Certainly nothing like the one HIV scare I went through, but just odd. I thought to myself what if I don't have what I have? What would that mean? So very much of my life is a part of my identity as a person with a disability. It's not like I'm not disabled. I clearly am. Whether or not it's the diagnosis I think it is. Anyway, like I said, I received a call recently from the doctor that confirmed that I have what I always thought I have. Nothing has changed, no real treatment. Certainly no cure, but it definitely feels more real. That might not be the right word, more solid, more sure? In another way it makes me kind of laugh. When a doctor calls you on the phone in a very serious voice and tells you that your diagnosis (the one you've had for 40+ years) has been confirmed. It isn't exactly big news anymore, but still it's a part of me now. I know it is part of me and not just a possible part of me.

FOGcon 4

Jul. 17th, 2013 05:56 pm
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I've been involved in organizing FOGcon for years now. I did publications for a couple of years. I was Vice Chair of FOGcon 3 and this year I am chairing the convention. Our theme is Secrets and one of our biggest secrets so far has been who were going to be our honored guests. I know many of you have been sitting on the edge of your seat waiting for the news. Well, here is. As Chair of FOGcon 4 I'm thrilled beyond measure to let you know that our guests this year will be Seanan McGuire and Tim Powers! Our Ghost of Honor will be James Tiptree Jr.

I'm really excited about this year's guests and our theme. Reading the news these days certainly makes our theme timely. If you'd like to know more about our guests or FOGcon, please check our website FOGcon.

I plan to write more about my adventures in chairing this convention. So check in here as well. There may still be a few more surprises coming up, so pay attention. We're going to have fun! Try to come out and see me this March.
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The day beforer yesterday, I didn't feel very good, so in an attempt at getting some attention I posted an "ask me any question about me that you want to, but never have". As soon as I posted it I felt a little self-conscious and quickly deleted it. In the interim between posting and deleting [personal profile] ljgeoff asked, what is my day like? I've been feeling a little guilty that I didn't respond (why yes I was raised Catholic. Why do you ask? :-)) Anyway, I spent most of Saturday by myself. There was a party I was supposed to go to but the weather prevented it. [personal profile] loracs was visiting [profile] dbubley at the rehab center. So I was feeling pretty lonely. I'm slightly better today but I seem to be at a low ebb these days.
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A friend of mine conceived and produced this video (with some camera help from [personal profile] loracs) after hearing Karl Rove claim that Senator McCain couldn't use a computer because of injuries he received as a POW. I'm a star!
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Tomorrow will be my 50th birthday. It's kind of a startling statement to me. 50. I keep getting hit with the realization that I've been on this planet a pretty long time. Things that seem really recent like the 80s are a really long time ago for some folk. It is a really long time, and I'm not supposed to remember long ago. I'm the youngest in the room. I'm the one that doesn't get references to The Shadow or Fibber Magee's closet. Nowadays, I'm often the oldest in the room. I saw Star Trek when it first appeared on television. I remember the lunar landing. I remember so many assassinations; John, Robert, Martin and Malcolm.

When I was 3 I had no right to an education. Disabled women were regularly sterilized in ignorance and for their "own good". Nobody heard of a curb cut. Later, doctors told me not to count on a long life. My parents, never expected me to go to high school or college. They thought I would stay with them until they died and then perhaps live out the rest of my life in a nursing home. After all, that's where many people with disabilities ended up, they still do because of the lack of community-based attendant care. Yet I got through high school and even through college. I never managed a full-time job, but I'd like to think that my volunteer work has made the world a little better.

This year has been a rough one for me and for mine. Sickness has left me feeling fragile. I'm closer to the end of my life than the beginning and I'm hating it. I try to concentrate on the good stuff. All the people who love me and take care of me. All and wonderful people who make me a little part of their life as I make them part of mine. I never expected to make 50. I thought I'd made peace with that long ago. I was wrong.

I hope I find someway to cope with what's coming. I'd like to think that I have a little of that stubbornness I'm so proud of left to deal. I've said this many times in the last several months. This has been one of the hardest years of my life, but it is also the year that I realized how well loved I am. [personal profile] loracs, we've been together for longer than we've been with anyone. Thank you for this life we've made. [personal profile] serenejournal thank you for this life we've made. And to the rest of you, my chosen family, my blood family and to all my friends: Thank you for the life we've made.
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Hey [personal profile] mactavish ask and you shall recieve eventually
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At least I think he is. Recently, I replied to someone on alt.poly in what could fairly be characterized as a heated manner. The person I responded to then unsubscribed from alt.poly. I still agree with what I said to her, but I don't feel very good that I played any part in chasing her away from the group. I'm not really looking for any responses I just wanted to put this here.
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I haven't been able to get myself to do much of anything for about a week. I woke up this morning and followed up on my search for adaptive tech at the Center for Accessible Technology. I've been pretending the last four years or so that I can do more than actually can. My disability changes as I get older and denial sneaks up on me with great stealth at times.

Called for a dentist appointment and began the process of ordering a new mask for my Bi-PAP. I feel very virtuous. :-)

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