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
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
My bone health has been an ongoing concern due to my anticonvulsants, several of which can cause decreased bone density, and to my eating disorder. My dread of this year's bone scan and endocrinologist appointment was not, then, entirely irrational, though it was admittedly a little extreme. Unsure whether or not I could handle the … Continue reading Endocrinology Appointment for the Weak-Boned and Strong-Willed
I’m nearing the end—I think; fingers crossed—of an episode of postictal psychosis that began a day after a cluster of seizures I had on Thursday night, continued through the weekend, and seemed to get worse Monday afternoon, perhaps because my brain decided to surprise me with another seizure cluster on Sunday evening. Of all the … Continue reading Awareness of a Different and Very Uncomfortable Variety
De Morbo Sacro: Life and/with Epilepsy 