Overcoming Adversity
NARCOLEPSY: NOT ALONE in Vegas, baby!
“We dance for laughter, we dance for tears, we dance for madness, we dance for fears, we dance for hopes, we dance for screams, we are the dancers, we create the dreams.” Last night, we truly celebrated NARCOLEPSY: NOT ALONE with big smiles and pride in Las Vegas! Accompanied by award-winning neurologist and Ph.D. narcolepsy specialist…
Read MoreWATCH NOW: MedX 2015 Ignite! Talk by Narcolepsy Advocate, Julie Flygare
I’m thrilled to share my 5-minute Ignite! Talk from Stanford Medicine X 2015. Please share with friends and family to raise narcolepsy awareness (https://youtu.be/MXTd8xd_f8s). In this video, I describe my journey with narcolepsy from people laughing in my face to living proudly and creating the NARCOLEPSY: NOT ALONE campaign. I emphasize how feeling “misunderstood and alone” with…
Read MoreWhat I Said: Julie Flygare’s MedX Ignite Talk Transcript
REM Runner’s Note: On Sept. 24, 2015, I had the huge honor of stepping on the MedX main stage at Stanford Medical School to give an ePatient Ignite Talk. This is (more-or-less) what I said: ************ Diagnosed with narcolepsy at age 24, I was excited to tell my friends and family. Finally! I had legitimate medical terms…
Read MoreBehind the Scenes: Speaking at Stanford’s Medicine X Conference 2015
What would you say if you only had 5 minutes to speak? This question haunted me all year. See, some girls dream about their wedding day. Others dream about speaking at MedX. Or maybe that’s just me, but the main stage of Stanford’s Medicine X has been a dream of mine – the holy grail of…
Read MoreSyncopation – Dancing with Narcolepsy & Cataplexy Guest Post by Elaine Golden
REM Runner’s note: Recently, Elaine of Chica Siesta joined the NARCOLEPSY: NOT ALONE campaign. After reading her beautiful blog, I asked her to share in a guest post here. Please enjoy Elaine’s powerful and fresh voice. Read more at chicasiesta.wordpress.com. Syncopation – by Elaine Golden Recently, my friends and I went swing dancing at a jazz club…
Read MoreWarning: Xposure to MedX May Xpand Your Mind – Attending Stanford’s Medicine X 2015
Goosebumps raised on my arms as we shuffled into the fake hospital exam room at Stanford Medical School. I hate hospital exam rooms, even fake ones apparently! About twenty of us lined the walls to watch two simulation exercises. Patient wears doctor’s white coat: In the first simulation, a real-life patient played a “doctor”, wearing a…
Read MoreThe Simpsons Modifies Homer Narcolepsy Episode “Somewhat” After Reading Narcolepsy Article
When the Simpsons premieres tonight at 8pm ET/PT, Homer will get “narcolepsy”. I’m thrilled to report that Executive Producer, Al Jean tweeted me: “The episode was modified somewhat after I read the extremely compelling article you wrote. Not sure you will be 100% happy…” Thank you, Al Jean and the Simpsons for thoughtfully reading and modifying…
Read More8 Years Since Narcolepsy Diagnosis: No Longer “Suffering the Silence”
Living in Silence: Eight years ago today, on Sept. 18, 2007, I was diagnosed with narcolepsy with cataplexy, a serious chronic neurological disorder of the sleep/wake cycle. I told friends and family right away. Finally, I had scientific words to describe my mysterious symptoms. But I hated people’s reactions. Some acted as if I’d said…
Read MoreLiving Bravely With Chronic Illness – Guest Post by Katie G. Nelson
As a 29-year-old, female journalist and photographer, I am accustomed to the words people use to define me; “Fearless”, “gutsy”, “courageous” are just a few. But, as a woman living with severe narcolepsy, I often struggle to reconcile these one-dimensional characterizations with my own sense of self. That disconnect was recently underscored when I announced…
Read MoreWorking with Narcolepsy: Part III – When Caring Comes Naturally
After my boss and leadership got even more involved – the nap room situation improved quickly. (Read Part I and Part II of this story.) Nap Bench on the Move: The nap bench was moved again, this time to a small room on the second floor along a nice secluded quiet hallway. The door’s sign was changed to Wellness Room.…
Read More