Narcolepsy: Not Alone

Once upon a time I read a book called Wide Awake and Dreaming, it was thanks to Sophie Moura, an editor at Marie Claire (now at Glamour) who gave me an article on the author’s story for an example of what my article could be shaped like. The book, written by then 23-year-old Julie Flygare...
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It’s a Small World After All

I should be writing this post from California, but I’m not. This week there were so many reasons for me to be in California. The first started on Friday morning–when Global Genes started their Patient Advocacy Summit. I watched it on my phone on the way to an echocardiogram at the hospital. After they’d strapped...
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…And That’s Enough of That.

Well–this has just been an emotional shit storm. Where do I even begin? Ok, so last you heard I was suffering a meltdown because of how I was being judged for taking the Xyrem and my general fumbling with trying to figure out the best treatment for my newfound narcolepsy. And just before that I...
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I Don’t Know What to Tell You…

I started to write down a list of decisions I made but gradually got lost on a rant about how confused I am. I’m glad the side-effects of the Xyrem are winding down, but I haven’t actually had any positive results as far as not needing to sleep during the day. So I’m giving the...
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So This One Time I Got Roofied…Xyrem

You know, intentionally–because that’s how they treat narcolepsy these days–with Sodium Oxybate–otherwise known as–a roofie. You may have seen in my past posts that I was waiting, begging, hoping, dreaming and still waiting to try Xyrem after we researched and went through the life-long process of getting it prescribed. Xyrem is an intense drug. Let...
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The Week Before the Bad Day

  So this was how it ended, but let’s back it up a few days and see what led up to me spending my morning in the emergency room.   It’s not like this morning’s escapade was big news. Even the lizards sneaking up my loft’s walls have watched me gradually burn out over the...
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Brain Fog

  We interrupt your regularly scheduled programming on account of uncontrollable brain fog. Xyrem is not here yet. Heart is out of control from fatigue & sinus infection. I am out of shampoo. And really, Leo?   …Cause all I dreamed about today was sneezing out the lining of my sinuses and my esophagus and...
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