Locks of Love & A Challenge

I have been trying to decide if I should cut my hair for some time now, and today I took the plunge and got it cut. Instead of just getting my normal trim, I had 11+ inches secured by a rubber band and chopped off. I am donating the hair to Locks of Love in hopes that it can be used to give hair prostheses to impoverished children who do not have hair. I have always wanted to donate my hair, but have for some reason thought that it would not be accepted because I have dyed it in the past. Today, I did the research and found out that my hair would in fact be accepted, so I made the decision to cut it off!

Here is a before/after photo:


I would be lying if I said that I wasn’t upset after I got it cut. I asked the hairstylist to cut my hair to my collarbone because I had more than enough to donate (the requirement is 10 inches), but she obviously did not do what I asked. This is probably partially my fault because I am cheap and went to Procuts, but nonetheless, I was upset at how short it had been cut. However, after thinking about it, I realized that I am donating my hair to someone who does not have any hair. My situation could be much worse!

After coming to this realization, I started applying it to other situations in my life, specifically narcolepsy. Narcolepsy has tried to hold me back in so many ways, but it is successful at holding other people back. Other people have more severe symptoms than I do. It could be worse.

So now, not only will my hair donation go to help someone else, it has actually started to help me as well. From now on, when I am exhausted to the point that I don’t think I can make it through the day, or when I start to feel the slightest bit sorry for myself, I can look in the mirror at or run my fingers through my short hair and remember that it could be worse.

Although I know that not many people read my blog, I want to present a challenge to anyone who actually is reading this. I want to challenge you to find something that can remind you during your struggles that your situation could be worse, but that things will get better. No matter what situation you find yourself in, no matter how debilitating your illness may feel, things will improve.

I know that I will live with Narcolepsy for the rest of my life. I also know that I have the choice every day to face my struggles head on, and I know that I am not alone in doing so. Medication may never fully cure the sleepiness that I feel every day, but I truly believe that being able to challenge myself to remember that I really don’t have it as bad as it could be can bring me some sort of peace. I hope that it does the same for you.


Busy is an understatement!

Wow! The past few months have flown by!

I feel my life has been constantly busy and that I barely have any time for myself. It is hard to find time to nap, but I can sometimes make myself take one every now and then.
Thankfully, I got cleared by my cardiologist to continue taking the Adderrall and I am now taking a different sleep medication because the Ambien started to lose its effects after a while. I don’t think I will ever be able to afford Xyrem, although I would really love to try it and see if it can make a difference for me! If anyone is not familiar with Xyrem, it is a medication that helps people with Narcolepsy get adequate and rejuvenating sleep. However, it costs around $3,000 a month. Although some insurance covers this medication, not all do. I do not want to start it and then have to stop once I graduate because of having inadequate coverage.

Thankfully, I have someone who constantly helps me deal with the difficulties I experience every day. Kevin and I celebrated our one year anniversary yesterday, and I took some time to reflect all that we have been through together. Within a year of dating, I had a severe allergic reaction and he was there for me at the doctors and hospital every minute he could be. I tore my ACL and he helped me do all of the simple things I could not do for myself. He even painted my toes for me because I couldn’t bend my knee enough to reach them. He was patient with me when I could not walk fast enough and was always there for me when I was depressed from feeling so impaired. But most of all, he has been more than encouraging and helpful in my journey with Narcolepsy. I was diagnosed just in August, and he has gone above and beyond to help me cope with the daily struggles. He helps me remember things when I cannot and he is patient when I can’t form sentences or am incoherent. He is even planning a Narcolepsy benefit on campus and has everything set up to where all of the proceeds will go to the Narcolepsy Network. The Narcolepsy Network’s mission is to “provide services to educate, advocate, support and improve awareness” of Narcolepsy so that people like me do not go half of their lifetime without being diagnosed.

Words cannot describe how truly lucky I feel to have someone who is there for me no matter what. Narcolepsy is not an easy disease to deal with, but I believe that having people like Kevin who are there to help truly make it worth fighting every day.

Sooooo Sleepy

My intentions were to update this blog more often than I already have but (surprise!) I’ve felt too tired to do so.

I’ll go ahead and type a short version of last week for me.

On Monday, I started taking Adderrall during the day (to keep me awake and focused) and Ambian at night (to help me stay asleep). I felt that neither one of them was working very well. I still felt tired during the day and like I didn’t sleep much when I woke up the next morning. Looking back, I realize that the Adderrall helped me far more than I thought. I suppose I forgot how tired I typically am during the school day, but I’m getting ahead of myself! 

The reason I realize it helped me more than I thought is because on Thursday, I was informed by my mom that it interacted with the medication I was already taking and then I later learned that it interfered with my Long QT Syndrome (If you don’t know what this is, click here). This may have been potentially deadly for me, so needless to say, I am less than happy with the doctor who prescribed the Adderrall to me.

The last day I took the Addrrall was last Thursday, and I have come to see that I need it. Or at least I need something like it. All I want to do is sleep. I wake up tired and stay tired. Yesterday, I took a 2 hour nap between classes and then a 3 1/2 hour nap at 7pm. Last night, I slept over 12 hours, and want to go back to bed now, even though it is only 8:15pm. Looking back, this is normal for me, but it keeps me from functioning like the average person.

So, here I sit, upset and angry, but trying my best to be as positive as I can, no matter how hard it is.  

I’ve had several people come up to me and say “I read your blog! I know how you feel.. I’m tired all the time, too!” It’s hard for me to respond to people because it’s hard for me to help them understand how “tired” I am. According to the information my sleep doctor gave me, “Being sleepy is part of everyone’s life, so the unimpaired person feels that he can relate to narcoleptic sleepiness. This is doubtful. It has been suggested that, if a normal person stayed awake for three days and nights, and then attempted to solve a complicated problem, the experience would be similar to what a person with narcolepsy lives with daily.”

I’ll end with that so that everyone who is reading this can possibly try to understand what I mean when I say sleepy/tired.


Beyond Narcolepsy

I remember the first time I heard the word “narcolepsy”. I was sitting in math class my sophomore year of high school and we watched a video of Rusty the Narcoleptic Dog. As we watched it over and over, everyone in my class busted out in laughter, including myself.

Many people have heard of narcolepsy. Some of you reading this have probably even seen Tweets from Narcoleptic Ned, a Twitter account where people sent in pictures of themselves “sleeping” in random places, as most people assume all narcoleptics do.

Narcolepsy has been featured in several different movies, and is typically portrayed as very comical occurrences.

Like most people, I found these portrayals hilarious. Now, the word “narcolepsy” will forever be something that I disclose to doctors when they ask me about my medical history. However, contrary to popular belief, I do not just fall asleep any time or any place. Instead, I am constantly tired no matter how many hours of sleep I get. This may not seem like a big deal to many people, but after having it for several years, it has become a serious disruption in almost every area of my life. I find it hard to remember the most simple things, I find it very hard to concentrate, and worst of all, I want to sleep all the time.

In high school, I noticed that when I came back from school, all I wanted to do was sleep. It was hard to force myself to do my homework or study because no matter how hard I tried, I could not get past my sleepiness. However, I brushed it off and accepted it as being normal. I lied to friends after making plans with them because I felt like I needed to sleep instead. I felt lazy, and was often accused of being a flake. However, I felt that I could not function if I didn’t take a nap. My naps were often hours long and I woke up refreshed only to be tired again an hour or so later.

Like I said, I accepted all of this as being the norm in my life and did nothing about it. Recently, I mentioned to my mom that I felt that it was a serious issue and went to see a sleep doctor. I did a sleep study last week, and got the results today.

The next few months (I hope it’s only months) will consist of me trying different medications in order to get this narcolepsy under control.  It will be a journey, and I thank everyone ahead of time for being patient with me. I also want to thank everyone for being patient with me in the past, especially when you thought I didn’t want to hang out with you. I hope this clears up any misunderstandings.

I wanted to start this blog to inspire people to reach their fullest potential in life. I want to show that despite this road block that I apparently have been living with for quite some time, I am able to function to the fullest potential that my body will allow me to, and that I will not let narcolepsy control my life. I am living beyond narcolepsy.

If you have any questions, feel free to ask me! I am just learning more about this sleep disorder, but will be happy to answer any questions anyone has. If you’ve read this far down in my post, thank you. 

Also, I want to let everyone know that I in no way resent anyone for finding the humor in narcolepsy. I myself once laughed at certain videos, pictures, etc. of narcoleptics. I simply want to point out that it truly is a serious condition that can effect several aspects of peoples lives!