Time Flies When You’re Having Time

That’s about the size of it. It is definitely easier to think when it’s cooler. Of course, the long weekend last weekend gave us crazy ass 85F temperatures, which… hey, you know, I tried to work with it, but it makes my legs turn to lead.

A lot of this supports the theory of some neurological paraneoplastic syndrome going on. Basically it means that my brain works stupid and tumors grow on stuff periodically, and a few different neurological thingees and malignancies/cell over growth thingees are associated here and there. And um… well. That’s about that. You watch diligently for the tumors so you can catch the deadlier stuff if it should come early (and that’s the silver lining, we know, so we watch). As far as the really crappy neurological stuff… um. They can try stuff, but generally, most of the time, responses are hit and miss. It might get better if they can identify the neoplastic process, but if they can’t, or if it has gone on for a while (and it has), then it might just be like this.

I had asked to be hooked up with a neurologist at the Brigham (sigh) just so all our records could be together and visible easily and no tests would be repeated because someone likes their lab’s letterhead better, but it seems Dana Farber is having a hard time getting neurology to respond.

And I really think there are like six nice neurologists in the whole entire country, and they know each other. One I have as a sleep doctor, one is Crazy Eddie, who referred me to another who could hook me in at Dana Farber… except Crazy Eddie is out here in the suburbs, and the other is at MGH, which… still kind of has a record sharing issue. It’s weird. I don’t quite get it. Everyone in the area can see notes MGH makes, but none of the images, and vice versa. Dana Farber and Brigham and Womens can access each other just fine, but… man, I just think there are administrative issues at the Brigham that make everything a living hell for everybody.

So I’m wondering is it worth being a pest to my poor peeps at Dana Farber (I mean, they can’t get blood from a stone either) or is it just better to go see Crazy Eddie, who I know, who knows me, and just have to deal with shuffling papers and records and try to navigate the waters if tests are ordered that someone else might want to repeat at their facility. I have had less than good luck with any neurologist at the Brigham even being remotely human. I mean, they seem like they’d do better guarding some toll bridge off on a mountain side most of the time.

I’m debating that, and I still haven’t gotten the speech pathologist appointment call (let’s not get me started) so I’m going to wait till November when the one in house at the Brigham is back. Nobody seems to want to work with the Brigham. I’ve had some pretty damn good doctors there, but I think the whole other end of the process — hell, I know — is just completely eroding any real inclination for patient or resource sharing. That blows.

Meanwhile, we do what we can… which some days is more than others.

I was tickled by this heron that was down near the river by the highway where my sleep doctor lives. Okay, I’m sure he doesn’t live there. There are beds at his office, and showers though, being a sleep lab and all. That sounds like a pretty fine workplace.

Except that I’m a librarian. Anyway.
Penny's Dad is a Nice Dad

Other days, Mr. Shoe needs to carry you around. Trust me. Thank god he doesn’t have those silly little tyrannosaurus rex arms.

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