Tag: chronic illness

in which we have pills & pigeons

In February I started feeling off in a way I couldn’t quite put my finger on; things weren’t quite right, I knew that, so I did an MS thing and started carrying a little notebook with me, taking notes. (This is a great trick if you’re working on getting anything tricky diagnosed, FYI: find a note-taking system you know you…

in which there is just gratitude

I have been lucky in the last few months in that having MS has really been pretty uneventful for me. Most days, having MS has just meant taking pills, disability activism, and watching my lifestyle. This morning, having MS meant crying in my kitchen over a UPS package, because a doctor I haven’t seen in over two years bent over backwards…

in which even I am surprised by how much I had to say

  Let’s talk about drugs, therapies, and approaches. I’m overdue! I’ve put up a new page to hold a running list of medications, supplements, etc. I’ll update it as necessary, but folks have asked, so there it is. There are a few disclaimers up there that I really want people to pay attention to and I’m going to mention them…

in which I finally see that this has all been a bit of a disappointment

  I was doing some back- end maintenance this week when I realized that I have been seriously disappointing some folks in a pretty major way: apparently, a LOT of people are coming here wanting to know if you can take gabapentin (Neurontin) with topiramate (Topamax). This isn’t some weird, outlier search, either- many, many different people have searched those…

in which I am hoping my feet don’t fail me now

It’s been a big month. I’ve been in and out of my house more than I can remember. Between my trips and his job, Sam and I are in a haze of gratitude for the time we do get to spend together. Kiddo turned 21 this month, which seems both absolutely natural and utterly impossible. Where did my sweet little mop-…

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…

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 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…

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…