Posts Tagged ‘narcolepsy blog’
I LIE A LOT in my Memoir: Untangling Lie, Lay, Lying, Laying, Lied, and Laid
I LIE A LOT in my memoir. Oh, not lying like fibbing. (Well, you can judge that later.) I mean, lying as in reclining. It’s a memoir of narcolepsy after all! I lie down and around so much in my narcolepsy memoir that I’ve called in grammar gurus to make sure I’m using the correct form…
Read MoreIsland Practice Book Raises Narcolepsy Awareness: Interview with Author Pam Belluck
Island Practice is the mesmerizing story of Dr. Tim Lepore, the only surgeon on Nantucket Island. Thirty miles off the coast of Massachusetts, Nantucket is known for its beaches, red pants, and sky-high real-estate prices. Author Pam Belluck reveals a different side of the island, a diverse year-round population with quirky medical problems and a doctor…
Read MoreDo I Forgive Myself For Having Narcolepsy? Fostering Self-Love With Chronic Illness
“Do I forgive myself for having narcolepsy?” I wondered recently. What a terrible question to ask myself. I didn’t cause my narcolepsy… so why would I need to forgive myself? I aim to inspire others, yet I’m still battling my own demons. Am I a phony? Five years ago, I found the words narcolepsy and cataplexy, a…
Read MoreJulie Flygare Interviewed About Narcolepsy Advocacy For Siren Interactive Blog
Last week, Siren Interactive invited a few rare disease patient leaders to attend the Rare Disease and Orphan Drug Leadership Congress in Philadelphia. Siren facilitated conversations around the topic of how biopharmaceutical companies can and should engage with patients. In this great blog post, Siren features videos of our experiences and our paths to becoming…
Read MoreJulie Flygare Writes Narcolepsy Patient Perspective Guest Blog Post on PsychologyToday.com
I’m thrilled to share my guest blog post, “Notes on Narcolepsy: Part 3 – From the Patient’s Perspective,” on Psychology Today’s “The Land of Nod” Blog by Dr. Shelby Harris. Dr. Harris is a friend, a clinical psychologist and the Director of the Behavioral Sleep Medicine Program at Montefiore Medical Center. For this post, she asked me to…
Read MoreJulie Flygare Speaks On Rare Disease Patient Advocate Panel
[Photo: Julie with Dominique Friend, Sickle Cell Disease Advocate] This Wednesday, I had the honor of speaking on the Patient Advocate Panel at the “InnovationPharm Event” hosted by Siren Interactive, in conjunction with the 7th Annual Rare Disease and Orphan Drug Leadership Congress in Philadelphia, PA. The round-table discussion over dinner focused on how pharmaceutical companies can…
Read MoreHeartbeats: Finding Mine Again
“Where there are no words… know the silences are carrying the thoughts and prayers of all who love you.” -Dawn Dais “What is this?” I wondered, placing my hands on my collar bone to get as close as possible to the problem. I sat in my parked car and looked out into the rain. Six…
Read MoreBefore I Die…
“Before I die…” caught me off-guard on Saturday. I was driving down 14th street NW in DC, when I slammed on the brakes and pulled over. I didn’t know what to expect, but the beautiful messages of hope and love made my day! I took photos but didn’t contribute to the wall. I mulled it over…
Read MoreJulie Flygare Writes Cover Narcolepsy Story for Caring Voice Coalition’ Community Magazine
The Summer 2012 edition of Community Magazine is out and hotter than ever! I really enjoyed writing the cover story and working with Caring Voice Coalition’s team – they are passionate about patients! Check out my feature narcolepsy article, “In Sickness and In Health” pg. 16-19: [issuu width=420 height=272 backgroundColor=%23222222 documentId=120627200108-e7727450584c4c56af6093c6d21d4463 name=cvc_summer2012 username=rocketpop tag=cvc unit=px v=2]…
Read MoreA Dream Among Dreams: Taking On Yoga’s Headstand
“Don’t be afraid of the space between your dreams and reality. If you can dream it, you can make it so.” I dream a lot, but one dream stood out recently: I saw myself in a handstand position – whirling my legs around like I was an acrobatic superstar. Um, yeah right. I love yoga,…
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