This Made Me Smile.

That’s my surgeon. He made Philadelphia Magazine’s Top Surgeons at Penn Medicine. [We were not surprised, but it’s still really neat to see!]

I’m (kind of) Famous!

So if you follow me on twitter, you had to have known this post was coming.

Thursday evening, I got a text message letting me know Moyamoya was on Grey’s Anatomy. Which, you know, awesome. Because awareness is awareness is awareness. [I literally said that to a friend the night before regarding her Cushing’s Disease, but that’s for another post.]

I finally got a change to see the episode on Saturday night. I waited, even though I knew it was on HuluPlus because M asked me to watch it with him.

How did I feel about it in a single word? Disappointed. It was mentioned in a total of five scenes. McDreamy did say something along the lines of, “You know what’s interesting? Moyamoya.” as he was walking away from the interns, but then it was only in the surgery scene & at the very end when his intern was complaining about how she had to do that surgery instead of another one. There was a brief scene where McDreamy was attempting to explain the surgery to Iris’s parents [Iris – a young girl – was the patient he was doing the surgery on. Which makes sense, as Moyamoya generally manifests in children.] but herĀ  brother was running around, so I don’t think a lot of it got through to people watching who had no idea what they were seeing. And it annoyed me to no end that the kid was screaming over the explanation. Probably because I have it, but whatever.

The surgery made sense [though it wasn’t like either one I had], but I felt like they literally glossed over what Moyamoya is. The last scene with Iris and her family, where she was grabbing a ball & showing her strength was returning after being weakened by TIAs was very sweet, though.

It might be that people finally stop looking at me like I sneezed when I tell them why I’ve had brain surgery. It may not. This may open a world of awareness. But most likely, it will just be a cool anecdote I can tell now. “Right, Moyamoya. Like that one episode of Grey’s Anatomy.”

I kind of wish it had been on House. At lest they focused on one patient & their own interpersonal issues instead of three or four patients at one time in addition to the crazy persona lives of the doctors.

Rare Disease Day

Until I saw it posted on twitter, then on Facebook, I had no idea yesterday was Rare Disease Day.

But it’s kind of cool that it was, since there are entire months for certain diseases and cancers. March is Colorectal Cancer Awareness Month, and one of my dear friends has that, but I bet you didn’t know until I told you that their awareness month is March. Unless you know someone who has it, right? September is Childhood Cancer Awareness Month, and honestly, we need to do more for kids with cancer. Because while no one should ever have cancer, kids especially shouldn’t.

April is Cushing’s Awareness Month. I have a friend who has that, too. And while May is National Stroke Awareness Month, I don’t necessarily feel comfortable claiming that as “my” month.

Because I didn’t just have a stroke. A stroke is just a symptom of Moyamoya, along with the headaches. And the surgeries. And the fear of just . . . seriously, had you ever heard of Moyamoya before you came to my blog? I can tell you it’s no fun being a statistic.

In order to treat Moyamoya disease, I will probably always take aspirin. I will probably always be on a Statin, though I’m trying like heck to reverse that. I will always have to have tests done to make sure it’s not getting any worse. I will hopefully never have to have another surgery.

To all of my people with rare disease, yesterday was for you! [And this post was supposed to be, too, but then life happened. Whoops.]