I realize that any communication with me as of late is a often like having Joyce’s Finnegan’s Wake read to you. At bedtime. It’s tough to follow. I don’t know where I go off track, but I do. I know it, and I don’t make even make sense to me sometimes. It’s a comforting thought for literature majors: Joyce had no friggin’ idea what Ulysses or Finnegan’s Wake were about either. That’s my theory anyway.
Here’s what’s new: After capturing Eddie the neuro, darting and tagging him and then setting him free into the wild so we can better track him, we know we have no new leads. We have old leads needing further examination, though, so I did get a name of a guy at Dana Farber. (There is a tangent coming.) Eddie has only seen one case of histiocytosis in the past, but his feeling is the workup for such things could potentially reveal what it is, even if it isn’t one of the many diverse forms. We’re doing a three pronged referral here, though. Nobody is real sure how they like to get referrals at the DF guy’s office, so Eddie is referring… I figure I’ll call and ask the DF guy’s office tomorrow if it was received or if they prefer (as some do, I guess) that I arrange it first. My sweet GP also is very much aware and willing to refer should the emphasis need be made.
Know what? I am so damn tired and sick of this, and tired of feeling like so much relies on any one person (it doesn’t… I mean, it can’t… there’d be far more prematurely dead people), I just kinda feel meh. I mean, it needs figuring out as soon as possible. But it feels endless in its own right. So I went to Twitter that afternoon and I tweeted this: Going to Dana Farber to see some guy who deals w/weird shit.
Later, Dana Farber rebroadcast my tweet as follows:
That’s one of our core competencies! RT: @linuxlibrarian Going to Dana Farber to see some guy who deals w/weird shit.
I texted that message to Mr. Shoe, who happened to be seeing our sweet GP for his physical (he’s doing well, by the way, thanks to the personal trainer). So our sweet GP saw it and thought that was awesome. Then, she also called one of my specialists a hardass and it was so clearly a compliment. It was… and the specialist was worthy of both the compliment and title.
Dana Farber responded again: @linuxlibrarian Of course, that’s not how we describe it in the literature….
They totally should, incidentally. I mean, at this point, all bets are off. I don’t want to hear about rare disorders and groundbreaking research. I want to know if a doctor can roll with weird shit.
Eddie apparently can (as I was told by another weird shit loving dorktor). I know my problem isn’t based in my brain, or lungs or heart or… But it is somewhere. It doesn’t even seem immune based so much as my immune system is being a turd thanks to whatever it is… My blood work is very normal for a sick person. My blood work is way too damned normal for a well person, in truth. The odd tests that come back are always the same, but never so out of whack that it screams much beyond iron supplements, or maybe you have an infection…
Well, okay, except for my electrolytes. Still.
Also, because I needed to make us promise we will go somewhere fun when this is over, I got a new camera. It’s sweet. Check it out: