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.