Happy MS-aversary to me? 8 years and counting

The actual day was yesterday — I started a post and babies woke up and and and…

Anyway.

Eight years ago today yesterday, I got an official diagnosis of multiple sclerosis.

I’d been having symptoms for six months prior, and doctor visits and diagnostic workups for a couple. At each blood draw, MRI, and lumbar puncture, the providers rattled off lists of differential diagnoses they hoped to rule out (brain tumor, HIV, lupus, transverse myelitis, B12 deficiency, sarcoidosis…and yeah, MS) so it wasn’t exactly a huge surprise.

A first.

A first.

The biggest surprise was that nobody ever actually said, “EJ, you have MS.” There was no tearful meeting in the doctor’s fancy office, no fat acceptance envelope in the mail, opened with shaking hands.

The doctor ticked a box on the checkout sheet, and I scheduled my next MRI and started picking a DMD to try. I went home. I went back to work.

Life went on the same as always.

Life went on completely different.

Life went on.

And that’s about the grand sum of everything I’ve learned so far.

Life goes on until it doesn’t.

Here we are today.

We’re the lucky ones, even when we forget we are.

Thanks for being here with me, today.

Even Kitty Genovese had two people call the police on her behalf

He called the video “probably one of the most disgusting, repulsive, sickening things that I have seen this year on Panama City Beach, and I have seen a lot of them.”

“This is disgusting,” he said. “We have got to get control of our beaches, it is not safe for our children to be out there on the beaches when these animals are out there.”

via Sheriff: Hundreds watched ‘gang rape’ in Panama City Beach in broad daylight, did nothing to stop it | AL.com.

Two thoughts spring to mind:

  • A broad-daylight gang-rape one of the worst things he’s seen “this year“? Holy shit. [Update: in this story published since, he elaborated that “‘This is not the first video we’ve recovered. It’s not the second video. It’s not the third video. There’s a number of videos we’ve recovered with things similar to this, and I can only imagine how many things we haven’t recovered.'”]
  • And “it is not safe for our children to be out here”? It’s nice he wants it to be kid-friendly, but how safe is it for the WOMEN BEING RAPED? Maybe we could start there?

My nagging Instagram improvements wishlist

I couldn’t find an offical place (in the Instagram app or online) to offer these humble suggestions, so I’m committing them here in an attempt to move on with my life.

BTW, I’m synapsecracklep0p on iG (yes, that “0” is a zero). My feed is 85% baby photos, 10% things I saw while thrifting, and 5% my Tysabri infusions count-up. Tl;dr MUST SEE TV.

Allow limited hyperlinks. Nobody wants Instagram (hereafter referred to as IG) to get all spammed up. We see enough sneaky pitches for body wraps, Romanian porn, and “get 363 new followers” (and I hope you’re reporting them, too).

But there are times when linking would really help broaden the conversations we have on IG. I would like to see the ability to link to images from my IG archive (most restrictive) or to other people’s IG archives (less restrictive).

Of course, they could blow the lid off and make links to any website clickable (unrestricted), but that’s not where I’d want to start.

Alternatively, it seems like IG could offer to make whatever-kind-of-links clickable when they’re from people you follow (most restrictive) or when they’re from people who follow you (less restrictive).

Make our past photos more findable. Every day, it gets harder to find past pics. Don’t make us feel like we’re sharing into a black hole! Surely there’s some way to shortcut back in time — by month? by year? by x00th pic? — when scrolling through our own (or others’) pics.

Make it easier to follow hashtags. This would be so useful for photo challenges or to learn about new topics. You could reinstate RSS for hashtags — I’d be okay with that, because NewsBlur makes it so easy to keep a finger on the pulse. But it would be lovely, too, for the IG app to offer a native way to do this as well.

Make it possible to group the people I follow It would nifty if I could group my follows by the affinities they naturally fall into, such as my twomom families, my MS family, my meatspace friends, my family-family.

Finally, and most importantly, make our pics and info portable. Most of us don’t have any plans to pick up and leave, but we also don’t want to lose all the time, effort, and heart we’ve put into sharing our memories. Offer us an easy way to download our pics with their captions and basic metadata, like when they were posted. Bonus points for even richer data, like number of likes.

Are you an IG user? What improvements are on your wish list?

American infrastructure takes another hit

Engineers said even though the bridge was hit, it is safe.
“It’s just a little section that broke out of it,” said Dana McCrary, with GDOT. “And the column had some patch work done on it and it knocked some of the patch work off.”

Glad to know our patchwork transportation infrastructure is still hanging by the thread it was hanging by the last time something like this happened.

via Truck loses massive tanker at Buford Connector | www.wsbtv.com.

Today I lost a bet with myself

I’ve had a pool going for a couple of years now as to whether Georgia would first recognize gay marriage (aka “marriage”) or legalize cannabis.

With the Supreme Court likely to rule soon in favor of enforcing the former, I’m intrigued that a bill just passed to also begin the process of making way for the latter.

Georgia Gov. Nathan Deal on Friday said he would sign into law a bill that would make the Peach State the 24th state to legalize medical marijuana, continuing the rapid expansion of cannabis into the Deep South and underscoring a dramatic shift in pot politics for social conservatives in the US.

I was the only participant in my pool, so financially it’s kind of a wash. But historically? 2015 is shaping up to be a pretty interesting year.

via How ‘marijuana refugees’ brought legal cannabis to Georgia – CSMonitor.com.