Narcolepsy Diagnosis
Sleep’s Choice: Living with Narcolepsy’s Excessive Daytime Sleepiness
Every day, at least once, but usually twice, my head gets heavy, as if a weight sits on my skull, and I know, right then, that sleep is coming. If I don’t put my head down immediately, the heaviness only gets heavier. My joints begin to ache and a wave of nausea comes over me.…
Read MoreFive Years Living With Narcolepsy: What I Would Tell My Newly Diagnosed Self…
This week, five years ago, I was diagnosed with narcolepsy. My five year younger self was so scared and unsure how “narcolepsy” would fit in my life. It was so unwelcome. If I could go back and whisper in my younger ear, this is what I’d say: You will be okay. You are not alone. You will face…
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 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 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 MoreMt Washington Road Race 2012 Video
Pictures are worth a thousand words. Here’s a short video re-capping my quest to honor my dad in the Mount Washington Road Race 2012 while living with narcolepsy. Music: “We Can” by Jesse Ruben. This song helped me up the mountain. The artist generously gave me permission to use it in my video, so…
Read MoreMarie Claire Magazine Narcolepsy Article Makes A Difference
On the path to narcolepsy diagnosis, there is an “A-ha!” moment when you find words that accurately describe your experiences. I remember mine perfectly. For one woman, Valentine Bernard, her A-ha! moment came last October at the grocery store: “Bernard had no idea what was wrong with her until she came upon the October 2011 issue of…
Read MoreJulie Flygare Presents about Narcolepsy at Harvard Medical School
Last night, I practically skipped up the white marble stairs to Harvard Medical School. My neurologist met me inside one of the fancy marble buildings. We said hello quickly and ducked into the classroom. I recognized this classroom. I’d presented here four years ago with my neurologist. At the time, I was less than…
Read MoreThe F Word
The F word is my favorite word and the subject of today’s post. “So what is narcolepsy exactly?” someone asks. A thousand words race through my head. If I was a computer, my screen would freeze at this point. System non-responsive… I spit out a few nonsensical statements and then shut down. Communication failure. Truth…
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