Before we left Charleston, I acquired a copy of my medical records. Twenty years' worth of paper filled two large manila envelopes to the brim. I opened those envelopes today, and scanned through looking for insights into what might have been caught before and what I failed to communicate. Looks like I wasn't any more helpful in the things I asked than the doctors were psychic enough to divine what was at the root of my troubles. I had hoped for a magic a-ha moment, where I would see a giant clue about the lupus. I found next to nothing. There were a couple lab results that showed a low serum albumin level (which can be related to lupus nephritis), but one of those sets of results was from the time I was in the hospital for three days with the first severe round of diverticulitis. Not a single one of my surgical reports was in my records (out of the five I had since 2008). And never once did anyone run an ANA (anti-nuclear antibody) test. I wanted to blame the doctors for missing it, but as I went through and read my own language quoted in there, I didn't give them any reason to go down that road. Damn. I wanted a smoking gun. I got a fizzled-out sparkler.
My daughter is at the Let's Play Live convention, tweeting out selfies of herself against the scrolling feed on the big screen. She put a "Look, Ma, I'm on TV" on the feed, and tagged me in it, and then sent a picture of herself in front of it. And ever since, she has been complaining about how fast that feed is going. It's a shame. She and I had plans to play with it, tagging each other for this very purpose. I suppose a lot of other people had the same idea. Can't slow down time in an event like this, and we can't rewind it like it was on the DVR. I think I'll leave her alone and stop tagging, and let her enjoy her show.
I played a bit of "what if" today, and was soundly chastised for living in the past again. I can't help it. There are so many things that could have worked out differently, and I agonize over them daily. I'm still so unhappy with where things are going, and I want desperately to change the future. I don't like giving up, and I really don't want to. I don't know how to. It may be months before I can accept things that will be far beyond my reach by that point. Many of them already are, and have been for years.
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