Jack Michael is Here!

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Jack joined our family 22 days ago on July 4th at 4:06pm weighing 7lbs 15oz. He was 21 inches long. The last few weeks have been a blur of nursing, changing diapers, and trying to rest when I can without neglecting my 5 year old daughter. The newborn stage is rough, but we are getting […]

July #Nchat Recap

July 6th, 2013, marked the 11th Twitter narcolepsy chat, #nchat.  It is hard to believe what started as a little idea to help people with narcolepsy communicate with other people with narcolepsy has become such a wonderful tool for finding answers, advice, and support.  This month, questions came from the suggestions participants wrote in the survey that […]

When a Heroine Needs a Hero (Or Two): A Little Sister’s Perspective on Narcolepsy and Cataplexy

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This is one of my favorite photos of the older of my younger sisters and me.  (She’s on the left; I am on the right.)  We went on a trip to Daytona Beach, FL years ago.  2006 I think?  We had a blast as we do when we’re hanging out together.  I love all three of […]

HAWMC Day 2: Introduction to Narcolepsy

If you’ve ever seen Rat Race, you’ve seen how narcolepsy is mostly portrayed in movies. Here is one of the scenes in the movie where the character is overcome with the urge to sleep: If only narcolepsy were that simple… or that funny… Narcolepsy is much more complicated than falling asleep randomly or falling asleep […]

Cataplexy Video Shown on Tosh.0

My husband and I were watching reruns of Tosh.0 last night, and saw this video. They only showed the clip through him popping up. I didn’t hear them say it was narcolepsy-related when I watched it on TV, but my husband and I were both certain that’s what had happened. It was so strange to […]

November #Nchat Recap: The Road to Diagnosis

Thank you to everyone who attended the November #Nchat on Twitter on November 3rd.  These chats are a great way to share experiences and to ask advice from others who may have been faced with the same problem.  This month, the chat was focused on the road to diagnosis and revealed instances of misdiagnosis, lack […]

A Rollercoaster of a Week

Boomerang at Worlds of Fun (source: www.worldsoffun.com)

When I was nine years old, my family went to Six Flags in St. Louis. It was there that I conquered my fear of rollercoasters and fell in love with thrill rides. My dad kept trying convince me to ride on the Screamin’ Eagle the entire day, but I refused. It seemed way too scary. […]

Slow and steady and gluten-free

It was a Thursday night in May when I decided to go on Xyrem.  I was driving through an intersection on my way home from work when a policeman also crossed the intersection perpendicularly to me.   He was already headed towards me before he turned on his siren or I wouldn’t have gone through my […]

Wednesday Words of Wisdom for the Weary: Symptom Variation

Dear Strides Against Narcolepsy, My friend told me that she has narcolepsy, but I’ve never seen her fall asleep. I thought narcolepsy means you fall asleep all the time. Was my friend misdiagnosed? -Anonymous Dear Anonymous, I must admit, when I first read your e-mail, I immediately went on the defensive. It’s hard for people […]

A Missed Race and a Medal

After all that talk and all that work getting myself pumped up, I ended up missing today’s race. However, mom-life trumps all other aspects of life, and my baby girl had a gymnastics thing today. I totally messed up and thought the race was in the morning, but they didn’t start the 5K until 1:00. […]