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:

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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.

-Megan

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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.