My Narcolepsy Angels: Guest Post by Racheal LeBrun

by julie on August 11, 2013

REM Runner’s Note: “What does the NARCOLEPSY: NOT ALONE campaign mean to you?” I’m inviting participants to write guest posts about their campaign experience. Thank you, Racheal for sharing your story!

Racheal Missouri

Guest Post by Racheal LeBrun: 

For me, at age 29, narcolepsy has been a very tough journey of struggling to live my life during the so called best years of my life. Knowing I’m not alone in this battle is something words cannot explain and that is why it was important to participate in the NARCOLEPSY: NOT ALONE campaign.

I work at a dental office, and asked my co workers if they would join me in my photo for narcolepsy awareness, and of course they were excited! I thought why not show me napping because that is a daily routine for me on our lunch break. We took the photo in front of the office fire place, I unfortunately don’t get to nap there but I do get to in the server room where it is dark and cool.

My co-workers are an amazing group of people. I had my first cataplexy attack during our Christmas party last year and I didn’t experience judgement of any kind, they listened and offered support instead. None of us knew at that time what was wrong but once I got diagnosed, everyone was understanding.

The photo-taking sparked a few conversations with my co-workers about narcolepsy, with one co-worker asking how common it is. I explaining that narcolepsy affects 1 in every 2000 people. My co-worker was surprised.

I can understand how narcolepsy awareness is lacking, at times I’m embarrassed to admit to my patients I suffer with it. I don’t want them to question my ability or worry I’m going to fall asleep during their dental procedure due to the misunderstanding of narcolepsy symptoms and how symptoms are different for everyone. I am slowly becoming more open to discussing this with my patients when an opportunity arises. I think the NARCOLEPSY: NOT ALONE campaign is great way to bring awareness that everyday people are coping with narcolepsy.

Thank you Julie for all you do to raise awareness and provide support.

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{ 8 comments… read them below or add one }

Morgan August 12, 2013 at 4:46 am

Hey I read your post and in a friendly sort of way just wanted to write and encourage you on your journey of dealing with Narcolepsy. I’m 28 and also live with Narcolepsy and I certainly haven’t managed to achieve what you have with your career. You should be very proud of the fact that you can get so much done with a condition so difficult. I also know what you mean about feeling a little short-changed about your twenties. You spend all your childhood and teen-age years imagining the freedom and possibility of your twenties and then you succumb to something that gives you an earlier bed-time than you had as a kid! Anyway it’s great that you did this campaign for awareness. Keep it up I say.
All the best,
Morgan

Reply

julie August 12, 2013 at 11:55 pm

Hi Morgan,
Thank you so much for this kind comment. I will be sure to pass this along to my guest blogger, Racheal. Your encouragement and understanding of Racheal’s journey will surely brighten her day!
Thanks again, Julie

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Racheal August 14, 2013 at 1:41 am

yes that was very nice to hear, thank you for encouragement!

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Jackie Quinn August 20, 2013 at 1:24 am

I second what Morgan said about your career success. You are very lucky and I’m very glad for you. I was fired from 2 jobs because I couldn’t arrive on time and when I was there it was hard to function. I’m very glad you have the support you do. Good luck to you!

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Nancy Elizabeth Contreras August 21, 2013 at 6:20 pm

Hi Jackie, I also was fired from two office jobs for the same reason, one I managed to keep from 2007-2011, the other only last me 3 months, but that because I totaled my car because as I tried to drive without meds while I was I between medical insurances.(bad idea)
After 8 months of job serious job hunting I was fed up and decided to go to a trade school to better my chances in the work feild, luckily the art of hair dressing runs in my family. I just started my first job last week as an assistant at a salon, I take the bus on a 2 1/2 hour commute (since I totaled my last car), and I make the effort to arrive almost an hour early. Wish me luck! 🙂

I really hope your career path reveals itself to you soon, keep looking forward and smiling, (I know its tough out there) but something better is out therPe waiting for you.

Sincerelly your friend,
Nancy

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Nancy Elizabeth Contreras August 21, 2013 at 5:52 pm

Hi Julie,  I am so pleased to see your efforts for Narcolepsy awareness! Its like a dream come true, I thought about doing it many times, but you actually did it. Thank you, I’m so proud of your accomplishments because I know that finding the time and energy to follow through can be challenging. My name is Nancy I’m 28 and I was diagnosed with Narcolepsy at 21 (talk about the best  years of my life. lol) But I feel I have a pretty normal life, I’m able to function on little medication, I take at least one nap a day, I work full time (with out napping :), I drive legally, I have a pretty normal and active social life, even my love life has been wonderful.  My journey has had it ups and downs and I feel thats because I pretty much tried to live in denial as I was determined to have a normal life and try to keep my disorder private (lets just say I chose the hard way.)

I appreciate what your doing, I feel it reaches out to other who are also dealing with this disorder and probably have concerns a questions because I know I did and still do. This is my first time ever contacting anyone else with Narcolepsy and I want to continue doing so because, I like to consider my experience and journey a success story even though it hasn’t been easy.  I love my life, I’m in the beginning of my career as a hairstylist in Los Angeles, CA and I have wonderful friends who are sensitive a respectful, and a loving and understanding fiancé. 

I want people to know that they don’t have to live in fear. That being happy and having a normal life with Narcolepsy is possible. 

Thank you!
Sincerely your friend,
Nancy Elizabeth 

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julie August 21, 2013 at 6:19 pm

Hi Nancy Elizabeth,

Thank you so much for your comment and for sharing your story here. I’m so honored you have reached out via my blog! Your perspective is invaluable, especially for younger folks who have just been diagnosed and concerned about their future.

I’m also excited to hear you are starting your career as a hairstylist in Los Angeles. I’m new to this area and looking for a haircut soon!! 🙂

Sending wakefulness and gratitude your way,
Julie

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Nancy Elizabeth Contreras August 21, 2013 at 6:35 pm

Thank you for your support Julie! 
I really feels great to be able to reach out to others. I’ve seen other blogs but I really seemed to be able to connect to yours, maybe because we’re so close in age but making this connection just gives me one more thing to be excited about.

And yes, just let me know and I’ll be happy to cut your hair and plus it would be nice to meet you as well. I have so much respect for what you have done. 

-Nancy

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