Here We Are, Again, at the End

May 29, 2019 01:33

It was weird watching Game of Thrones: The Last Watch after hearing about Kit Harrington's troubles afterward. It colors things. I hope he’ll be okay.

Though part of my thing now is wondering if and hoping Andy McClay is okay.

Also, I was surprised to hear "This Corrosion" play at one point, even if it is a cover(!) done by a band I don't know and the end credits didn't reveal.

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My car was in the shop last week from the engine overheating. It turns out it was low on antifreeze somehow, despite it getting a full refill at the shop in February, despite the mechanics not finding anywhere the antifreeze could leak out through. Thankfully, the head guy refilled the antifreeze and charged me nothing. I brought my car back in tonight because the engine is overheating again (also, I smell antifreeze if I'm driving a while so hmm). I really hope it's fixable and not expensive. I'm feeling so stressed out.

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But before I realized my car was dangerously overheating again I went to my first ever Chiari support group meeting, that I'd RSVP'ed for after seeing their advertisement in the Queens Chronicle.

You know your worry that if you went alone to something that looked cool you might end up there with just the person who put it together and it would be an awkward time of the two of you alone together trying to figure out when to give up on it and leave? Yeah.

Supposedly the last time they had a meeting six weeks ago 6 to 8 Chiari people showed up, as well as a doctor known in the Chiari community, Dr. Kula, who took questions from them, and it was three hours. Today it was just me and the organizer and after 50 minutes we gave up on everybody else who'd RSVP'ed ever showing up. Supposedly, the organizer, who has Chiari herself (though she doesn't need to be on opioids or any other major medication for it), will contact that doctor for me because I said I was having trouble finding a neurologist or pain management doctor who knew what to do with me. She has my e-mail address.

She was trying to get me to commit to joining a steering committee and fundraising while I was looking around at all the empty space around us. She was trying to get me to share a hotel room with her for an upcoming Chiari conference in Philadelphia, and the conference is $135 and I'd have to buy a round trip bus ticket for a drive that would be two hours in a bus seat each way....

If another meeting comes up in the next six weeks maybe I'll give it another try. Maybe. Of course, this was at a church in a deep, far part of Jamaica, Queens I've never been before. And my car will still have to work, because it's complicated to get from here to there by car and doing it by mass transit involves a bus, a subway train, and then an LIRR train and I don't even know if my MTA reduced fare pass means anything to LIRR.

I probably should have realized the rest of the day would be a disaster and I should just go home and hide under the covers when I went up to the front doors of the church and saw the twisted, smushed corpse of a bird on the doorstep. (Those doors were locked, and I had to go to a side entrance to go inside, so....)

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neurology, pain management, car, chiari i malformation, civic, game of thrones, the sisters of mercy, queens, ehlers-danlos syndrome

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