Wednesday, May 7, 2014


Well, it's been a few days shy of a week since I started this new medicine. Yesterday I woke up with a extremely bad headache and I was tired all day. Since starting this medicine, I have been extremely nauseated and anxious. These all are common side effects. Yesterday was hard for me, I fought sleep all day then night came and I couldn't go to sleep.
These drugs were not a cure for my narcolepsy, nor did they "normalize" me by any means. However they did help me to achieve a much higher quality of life. Without these, treatments, my life would have been entirely under the control of cataplexy and pervasive sleepiness. - Julie Flygare.

I started and finished reading a book (this week) called "Wide Awake and Dreaming: A Memoir Of Narcolepsy" I strongly suggest everyone reads it. Many people only know of Narcolepsy by the stereotypes from tv and movies. It's far from that. In Julie Flygare's memoir, she writes how her life completely changed after it. I absolutely love this my life did change after being diagnosed, and not many people know about it. I am working to change that. Help me spread the awareness of Narcolepsy.

Friday, May 2, 2014

It's Showing Itself

In the beginning of 2012 I suffered with severe headaches. I went from doctor to doctor and no one knew what was wrong. But I had one doctor who decided to see if it was sleep apnea. Shortly after I was referred. I was given a sleep study and day study. Where it was found I  have narcolepsy. First being diagnosed was a shock. I was in denial. This diagnosis doesn't have a cure. It can only be treated. I couldn't believe how one little thing can ruin my dream. But I learned to deal with it.
Since then, I've had issues where I have had to explain it's not like the movies. It's not because I'm lazy. A lot of people diagnosed with this don't like telling many people. I want to tell people, I want to educate them. I am able to drive because I have medication that helps me stay awake. I try not to let this disorder effect my life. There are times I have no choice but to stop everything and take a 15 minute "nap".

This year will mark two years I was diagnosed with it. And since then I have graduated with a bachelors in applied science concentrated in criminal justice administration(which now is a little hard to use). I will be sworn in to a volunteer position with CASA (court appointed special advocate). I also have started another bachelors degree in early childhood development.  I have done well with managing the narcolepsy.

Well, May 1, 2014 my diagnosis of narcolepsy without cataplexy was changed. Two years after being diagnosised, it was changed to narcolepsy with cataplexy. Which from my understanding is common. I'm not concerned. I'm actually am relieved. I explained how I thought they were dizzy spells. I've had them my whole life and noone could tell me why! Well he explained to was cataplexy episodes, the narcolepsy is being to progress. Now a question from my childhood has been answered. So follow me on this journey as I find the appropriate medication to control the cataplexy. & maybe more answers to my childhood questions :).