Wednesday, August 1, 2012

The early years

When I was 15 years old, I would come home from school and immediately fall asleep.  Waking up in the morning for class?  It was a battle every single day.  It became my way of life to sleep as often as I could.  (Looking back, in my senior yearbook - I listed sleeping as my favorite past time.  RED FLAG!) I went through a dramatic change from being involved in 3 varsity sports and dance to just being active in one school club.  I started smoking cigarettes (don't judge, I know they're horrible) and guzzling Dr. Pepper like it was going out of style.  Though I didn't know it at the time, I was self medicating to stay awake and get through each day.  I became the butt of all family jokes for being so lazy.

I wanted to become a broadcast journalist.  I imagined myself working on the TODAY show.  Unfortunately, I tried a few years of college, but could never make it through a semester with all of my classes. I was a B student in high school.  I love to read and learn new things, but I couldn't handle the discipline it took to graduate from college.  It's my one regret to date.  I'm hopeful I can return one day soon and show my son that education is important.  

Fast forward to 2007.  I'm 26 years old and a single mom.  For the first time, I realized that something was seriously wrong with me.  I was at work and my boss had just told a funny joke. My legs felt like jello. I reached out to grab the chair nearest to me to stop from falling down.   "Did you see that?!" I remember asking, but my boss didn't notice anything.  This happened a few more times and I started to get extremely frightened.  Logically, I knew that this wasn't right and that it was most likely neuro related.  My mom asked me to pay attention to every detail the next time it happened.  So, when it hit again I noticed I was telling a joke.  A lightbulb went off over my head - I had been laughing every single time this happened!  I had something to go on.  That night, I sat down at the computer and typed in "muscle loss in knees while laughing".  Cataplexy.  Sudden muscle loss triggered by heightened emotions.  Cataplexy is a common symptom of narcolepsy. Not everyone who has narcolepsy will have cataplexy, but if you have cataplexy you definitely have narcolepsy.  (this was in 2007. The research of Narcolepsy is still in somewhat early stages.  I believe there are documented cases of cataplexy without narcolepsy now.).  The more I read, the more things made sense.  I had a name for this and I knew that it wasn't going to kill me!

Until next time,

Saturday, July 28, 2012

Sometimes, I feel so alone

To date, I've never met another individual with Narcolepsy. My doctor recommended a local support group and gave me the information, but I was unable to locate this group online. My friends and family know that I have narcolepsy and they've come leaps and bounds in the way they think about me. No longer am I lazy J! Still, it would be nice to talk to someone else who "gets it".

The Narcolepsy Network has an annual conference and I was unable to attend last year when it was here in Vegas. This year it is in Cleveland and I'm leaning towards going. If you're reading this - have you ever met a person who has narcolepsy? Or if you're an N sufferer like me, have you met more like us?

In the past week there was a study that came out regarding how much people know about narcolepsy. The most surprising data to me is that only 20% of SLEEP SPECIALIST PHYSICIANS feel like they know a lot about Narcolepsy. 20%.... It's things like this that make me wonder how much different my life could be right now if I was diagnosed at 15 or 16 rather than 30.

Until next time,

Friday, July 27, 2012

Steal my sunshine? I think not

Mad passengers, frazzled parents, rude lady? Don't let 'em steal your sunshine! Working in customer service, you deal with all types of people. Why is it that we seem to recall the unpleasant encounters more than the happy ones? Hopefully, the answer to that is because the happy people outnumber the mean ones.

Today at work, we laughed after an encounter with a person that was just unhappy. You can't win over everyone and I get that. What you can do (and what my team & I did) is treat that person just the same as everyone else. Maybe mean lady will look back on today and remember our happy, smiling faces. And maybe she'll even smile!

Until next time,