I’m lying on a stretcher in the preoperative care unit waiting for my VNS surgery. What better time to write a blog post? (I finished it, however, a few days later.) As I mentioned in my previous entry, last week was a doozy. Most notably, on Tuesday we had a team meeting in which I … Continue reading Big Changes, Minimal Acceptance
Well, that was a week. From last Tuesday to last Friday, I received difficult news or experienced something difficult, or both, every day. In this post, I’ll write about what was/is, in many ways, the easiest to process and one of the most time-sensitive. (“Time-sensitive” probably isn’t the right word choice here, but I don’t … Continue reading Read the Room, Vanessa
… and, to be honest, I only remembered because a friend sent me a text wishing me a happy Purple Day. I’m pretty sure the fact that it totally and completely slipped my mind makes me a bad PWLWE (Person Who Lives with Epilepsy). Or maybe it has more to do with the other “stuff” … Continue reading It Was Purple Day (for Epilepsy Awareness) on Saturday
My husband took a well-deserved vacation last week. He spent it both relaxing and getting things done, and I spent most of it in his office, which I commandeered the Friday his time off began and quickly turned into a low(er)-stimuli retreat—my version of a spa, minus the pedicures and saunas and without the danger … Continue reading Creative Solutions to Practical Problems
I had an appointment with my epileptologist on Friday morning. Since he needed to check my VNS, an implanted device, I had to go to the hospital to see him. There happened to be fresh snow on the ground. I was admiring the pureness of it and pulling on my winter boots as I waited … Continue reading A Dose of the Real World
It's a pretty normal Saturday in hospital land. I've eaten many things and drunk many Ketocals. I've socialized a little (something I wasn't doing much of when my postictal psychosis was at its worst) and considered building a new LEGO set. I've had a seizure. My seizure frequency means that I wake up knowing that … Continue reading A Glimmer of Hope for “a Challenging Case of Very Intractable Epileptic Seizures”
Yes, I mean news news, not news of the personal-and-complainy variety. Yesterday I ran across this article about five-year-old Emma, who's the first patient in Canada to have the most recently released VNS model implanted. When she was seven months old, Emma was diagnosed with the seizure disorder infantile spasms (IS); her parents are hosting an … Continue reading Some Positive VNS News in the News
As I write this, I'm on my way home from the vacation in British Columbia that I had to reschedule last month. As I actually post this, I've been back in Toronto for several days. This means that I made it to my departure date without needing to reschedule for a second time; made it to … Continue reading A Short, Self-Congratulatory, and Poorly Edited Post (I Went on a Trip and Didn’t Die!)
I haven’t done much thus far to celebrate Epilepsy Awareness Month (March) or Purple Day (March 26). Though I had fantastic ambitions to throw a theme party for Purple Day, I was eventually able to acknowledge that given the energy that the tasks would require, it’s probably too soon after my latest period of seizure … Continue reading Let’s Be Aware (for Epilepsy Awareness Month)
I’ll begin by acknowledging that despite having had the best of intentions to write at least a post a week throughout January, I’ve instead continued to more or less ignore this blog. I’ve had legitimate reasons for falling short on my WordPress duties, but the guilt nonetheless remains, so I’m just, you know, putting it … Continue reading Check In/Check Up
De Morbo Sacro: Life and/with Epilepsy 