Photographer, Designer, Writer, Advocate
There are so many narcolepsy blogs and vlogs where people track their Xyrem experience and I'm starting to understand why they all start out with such vim and vigor and trail off after a few months: it's because the person is waking up and living life! Instead of sleeping all day and blogging/vlogging in between,… Continue reading Xyrem Vol. 2
Narcolepsy, chronic illness, and mental illness suck. Below are some of the things that make my life easier, better, and more comfortable. These are great for narcolepsy/cataplexy and maybe good for other chronic illnesses, too? Comment below with your favorite products that we need to know about to live a more full life while battling… Continue reading Narcolepsy Product Guide
This is something I posted on Instagram (@curioussparkledirt) one week ago and I want to share it here. Today my amazing husband helped me clean out my grad school office. And then dealt with me afterwards. Nothing makes a person grumpy quite like returning to the shrine of their undiagnosed neurological disease. You might be… Continue reading Cleaning Out My Office
Happy Sleepy Saturday. Today I have an exciting announcement! The community you've been dreaming about is finally here. I'm thrilled to announce that Misty Bear, Nimbus and I are expanding our lifestyle hostel! Are you jealous of your cat? Do you wish you could sleep whenever and wherever you want without feeling shame and guilt? Do you… Continue reading The Misty Bear and Nimbus Lifestyle Hostel for People Who Have Morning Hands and Other People Who Have Weird Things Too
Before leaving the appointment my medical chart changed forever. I got a clean bill of mental health in exchange for a neurological disease as my neurologist struck a line through “depression”, “anxiety”, and “ADHD” and wrote “narcolepsy with cataplexy”. We would revisit those diagnoses later, but until proven otherwise, he explained, those were all misdiagnoses for narcolepsy. I felt like the weight of the world was taken off my shoulders that day. I felt the relief of finally being SEEN by the medical profession for the first time in my life. And, wait for it, the relief at not having a mental illness. Yes. I would rather have a neurological disease than a mental illness, even though the symptoms can manifest in similar ways. Our society viewed me as “crazy” before my narcolepsy diagnosis, and “sick” after the diagnosis. Why?
