Tag: multiple sclerosis

on snow days, disability ethics, and a secret

We finally got that Big Snow that our strangely gentle summer had promised us. Seven and a half inches, folks- more in north city. Anyone who’s tried navigating a Baltimore side- street after a major storm knows what today looks like; we’re snowed in, drinking cocoa and watching movies all day. For all the weather- related complaining I do about…

in which there is an announcement, and everything is terrible

So if you haven’t seen it yet, I made a pretty enormous announcement over on the shop blog. Some of you don’t even know there is a shop blog, so hey, it’s cool if you didn’t know. Bodies suck, folks.  Right. Right: I’m still kind of stuck on that last sentence: bodies suck. Bodies suck, bodies suck, bodies suck suck…

on faith and change

My new neurologist drinks Diet Mountain Dew. I’ve latched on to this like a sneak peek into his humanity: I like my doctors to be people, and this seems like a throwback to med school study sessions, or possibly secret, epic tabletop gaming sessions— absolutely a possibility, as he’s also only slightly older than I am, and slightly odd, as…

on living with a hurricane

I’ve been working on this thing lately, a push to regain my body. It’s exhausting. Regaining your health really takes it out of you, as it turns out. Funny, right? Maybe I just needed to hit a really low point first, though, in order to gain the momentum. It gets jumbled. Either way, here I am, scuttling from one appointment…

on conservation, emotion, and sitting with it all

Man, sometimes it’s hard to do the right things. I work really hard at energy conservation. That’s a funny sentence right there: “I work really hard at energy conservation.” A total oxymoron if there ever was one, but anyone who’s been ill for any extended period- ever have mono?- you know what I mean. You have to save up for…

on the quantification of pain

Multiple sclerosis is bullshit, you guys. No pity party, but rather a shout- out to the percentage of my readers who are dealing with chronic pain diseases and/ or syndromes: this crap is for the birds. I am officially, 100% over this. This stuff is just plain tricky, in so many ways that I’d never seen coming when I received…

in which we talk a little about this new thing

    I passed! I know I already said that, but I feel as though it bears saying again (and again)— I passed, you guys! I passed! I went in for my Gilenya first dose on Wednesday, and it went about the way we’d expected it would; even with my nerves jangling away, my BP was at about 92/63, and…

on Gilenya and passing time through the power of cat sweaters

I go in for my first dose of Gilenya this Wednesday. It’ll be a full day in a clinic, mostly just sitting and being observed. There will be an ECG in the beginning, to double- check my overall cardio health, then the pill, then periodic checks throughout the next six or eight hours (I’m not sure if it’s six or…

on Gilenya and giving it my Girl Scout best

So this week I’m doing this mental thing where I’m sitting on the edge of my invisible seat, you guys. Let me back up. I’m working with the folks from Novartis, the suppliers for the pill I’m hoping to transition over to, in order to try and set up my initial dose. The pill is called Gilenya, and it is…

in which I am working on compassion

My left leg is being an idiot again. It had been behaving for a bit there; not perfect, not ideal, but just okay enough that I was feeling hopeful. Today, though. Today I woke up with it feeling heavy, leaden, achy, dull and less- than- responsive. Stupid leg. Idiot leg. I got out of bed and immediately felt a flash…