… 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
I recently wrote a longish autobiographical piece about my childhood OCD-based fear of waterslides. (It’s still not polished, and I’m not sure what I’ll do with it after the final edit, so I’m not posting it here.) Waterslides weren’t the only way OCD affected my life when I was a kid, and my brain eventually … Continue reading Isolation, OCD, and a Request
If you know me in “real” (scare quotes because what’s real, even, in this day and age?) life or read this blog, you almost certainly know that I’m a LEGO superfan. Those little plastic bricks aided me as I recovered from a brain injury; they’ve distracted me during long hospitalizations; they’ve rewired neurons fried from … Continue reading Yet Another LEGO Appreciation Post
I'm taking a few minutes from my Boxing Day to wish you a happy holiday week (if that's relevant to you). I hope that you're striking a balance between celebration and safety and that you're responsibly marking the season in a way that feels right to you. In other words, Merry Christmas! Or not. My … Continue reading This Christmas
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
Today something I’d started to think would never happen at long last did (happen, that is). Call it a September miracle, call it the cumulation of over nine months of intensive medical treatment, call it what you want. All that matters is that I’m home. Not that I was excited to leave or anything. I’ve … Continue reading And Now, Home(!)
I’ve been feeling so much better since that episode of status epilepticus. As I’ve had time to recover from the seizure itself, my Dilantin level has gradually come down, though it’s not yet at an ideal place (more on that in a moment). Best of all, and somewhat paradoxically, I’ve been having way fewer seizures … Continue reading A Silvery Dilantinish Lining
If you know me irl (internet slang!!!) or are a regular reader of this blog, you're probably aware that I'm someone who places great value on controlling every aspect of my life I possibly can. My ability to stick to rigid, self-imposed rules is, as I've learned, a power that I can use for good … Continue reading Seizures, Supplements, and Sweatpants (Control!)
I'm continuing to make lots of progress and am super grateful and all that, etc. etc. However, as you've probably gathered from the extensive complaining in which I've indulged in previous posts, it isn't all sunshine, unicorns, and high-energy ketogenic supplemental beverages. Although there've been many challenges, the one that's made me wallow the most … Continue reading Ask and Ye Shall Sometimes Receive
Looking out my window and at the weather app on my phone tells me that it's no longer winter, which is a little hard for me to process since this hospital stay began in early December and the last time I was outside was in February. Lemme tell you: I'm not a fan of everyone … Continue reading It’s Nice Out, and I Hate It
De Morbo Sacro: Life and/with Epilepsy 