Dear Julie

by julie on November 1, 2013

Dear Diagnosis Blogathon HeaderThis is my personal response to my “Dear Diagnosis” Blogathon prompt. Read other responses and join us here.

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Dear Julie,

You will be okay. You will be okay.

I wish I could reach through time and give you a big hug. I wish I could protect your heart from the pain.

It will not go away, but it will get more manageable each day.  You will reach lows you never imagined, narcolepsy will challenge you in new ways. Hold on tight. It all matters, especially the lows, it all shapes you into who you will become, leading to the most amazing incredible journey.  

You will find people who think you are more awesome for what you’ve been through. Unbelievable, I know!

Be kind to yourself. Let go. Fall. I promise the world will catch you.  

You will be okay.

Love,
Julie, 6 years later

{ 7 comments… read them below or add one }

alyson moore November 2, 2013 at 4:00 am

Thank you for this website; One Step Ahead of Narcolepsy. I was recently diagnosed with Cataplexy after many years of being misdiagnosed. I was treated for illnesses I did’nt have. It was a very long confusing struggle not knowing what was wrong with me. Alas, I have been on Xyrem for twenty-nine days now. I am learning so much about this illness daily. I admit, I felt very alone with the new found knowledge of all that I must bear on this journey with Cataplexy; have not been told yet in regards to Narcolepsy. I have a new sleep medicine doctor whom I see next week. Now that I am more “AWAKE” and reading the many stories of others, I am feeling less alone. Friends and Family do their best in understanding, but here on the website, I don’t have to explain myself at all.

I read your book, “Wide Awake and Dreaming” which helped me alot. I plan to have my brother read it next.

After years of not being able to do my artwork due to sleepiness and many other uncomfortable human hurts, I was finally able to attend my drawing class at The Scarab Club, one of the oldest art communities in Detroit Michigan. Of course, I am not driving yet and hope to one day soon.

One day at a time.
Many smiles so far with “ME” feeling better—Amazing to get Restorative Sleep.

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Julie Ann November 2, 2013 at 4:15 pm

Julie, your letter was beautiful! You had me in tears when I read it. “Fall. I promise the world will catch you.” Indeed. So many of us will always be here to catch you, and you can always count on me to be among them.

I’m incredibly lucky to count you as a friend, and am happy to be able to walk this crazy, strange trail with you. (And you *are* more awesome for everything you’ve gone through, and for how you’ve handled it and persevered. You’re amazing, lady!)

Big hugs and lots of love,
JWN Funk

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Melody November 3, 2013 at 8:07 pm

Wish I could give “then and now” you a hug too! Thank you for sharing.

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Emille Rae November 5, 2013 at 5:07 am

it seems it has been “a blessing in disguise” for you julie… shaping you into who you are today. the world catching you. :) <3 thanks for sharing everyones!

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tove stakkestad November 24, 2013 at 10:30 pm

Thank you Julie for all your hard work. I have shared your book with my mom – hoping she would read and learn. Reading about your journey was very much like looking into my own world nine years ago – of course I was never smart enough for lawschool – but one can dream! ha ha ha. Again – THANK YOU!

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julie November 24, 2013 at 10:54 pm

Thank you, Tove! I’m so glad my book can help describe your journey. It’s my honor to raise awareness, thank you for your support! <3 Julie

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Katy February 11, 2014 at 6:39 pm

Julie,
Thank you so much for your advocacy work and especially your “Dear Diagnosis Blogathon.” I was diagnosed with Narcolepsy last week after months of doctors visits, thyroid tests, and finally the sleep study that confirmed my Narcolepsy.

This week, I’ve experienced a flood of emotions about my diagnosis. I’m eager to start on medication that will improve my life but also terrified of the potential side effects and trial and error period. As I educate myself and read your blog I’m feeling less broken and more empowered. Reading the “Dear Diagnosis” letters helps alleviate my feelings of isolation and that no one (including myself, at this point) understands Narcolepsy.

Thank you!!

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