New Research for Breastfeeding Mothers with Narcolepsy

Guest Contributors: Emily Barker, Ph.D. and Katherine Sharkey, M.D., Ph.D. New research published in the journal Sleep Medicine suggests that lactating women who take Xyrem (sodium oxybate) to treat narcolepsy with cataplexy can time their breastfeeding to avoid exposing nursing infants to elevated levels of the drug in milk (Barker et al., 2017). Data from…

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Syncopation – 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…

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Living 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…

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Taking a Drug Holiday – Guest Post by Nikki

NIKKI’S GUEST POST: Today was a drug holiday… Enough said. It’s always weird to take one for me. I always forget what it’s like. I don’t want to think about how many naps I had and the things I had hoped to get done. It’s interesting how some people see a nap as a treat…

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Sleep Walk Jacksonville Shines Light on Sleep Health & Sleep Disorders – Guest Post by Dietra Mohrman

Over 40 people gathered to raise awareness about sleep health and sleep disorders in sunny Jacksonville, FL on March 8, 2014! Sleep Walkers and canine friends in tow, gathered at Bull Park in Atlantic Beach, FL. They registered and collected event t-shirts, wristbands, buttons and festive goodies. Attendees shared their amazing sleep spirit posters. As the local organizer and “Sleep Fairy” for…

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Narcolepsy 504 Plans for High School Students – Tips for Parents by Diana Brooks

REM Runner’s Note: Diana is the mother of Danielle Brooks – an amazing, artistic and athletic young woman with narcolepsy who created www.succeedingwithnarcolepsy.com. In this guest post, Diana offers insightful tips for navigating the school accommodations process and helping your student with narcolepsy succeed.  Diana’s Guest Post: 1. You must be an advocate for your child. No…

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Guest Post: Dear Dylan – A letter from Jennifer to her son

Guest post by Jennifer to her son Dylan in response to the “Dear Diagnosis” Blogathon prompt. Read more letters and join us here. ———— Dear Dylan, Today has been a rough day for you. Your great grandma is being buried today and it’s triggered an emotional state neither one of us understands. We have both been…

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Guest Post: Dear Angie

Guest post by Angie in response to the “Dear Diagnosis” Blogathon prompt. Read more letters and join us here. —————- Dear Angie, Today you are filled with relief since you have known something is wrong for 20 years and but scared because today you have a name for it. You will send your referring Nurse Practitioner,…

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Guest Post: Dear Katie (A Teenage Narcoleptic)

Guest post by Katie in response to the “Dear Diagnosis” Blogathon prompt. Read more letters and join us here. ————- Dear Katie, Today you will be diagnosed with a sleeping disorder.  Though you feel it is obvious that you have Narcolepsy, do not get upset that you are diagnosed with having Idiopathic Hypersomnia; trust me, it…

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Guest Post: Dear Jennifer

Guest post by Jennifer in response to the “Dear Diagnosis” Blogathon prompt. Read more letters and join us here. ———- Dear Jennifer, Today you are finally relieved to find out you have had Narcolepsy this whole time.  After visits and visits to the doctor with Mom and them telling you over and over that its just…

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