*Originally published 12/11/13*
2 weeks ago I was on my way to Disneyworld with my best friend and her family. It was so much fun! I was able to walk around all of the parks and ride rides, and was actually able to move the next day. I was able to ride roller coasters, like Everest and Space Mountain, but I knew not to go too far and ride Tower of Terror and Rockin’ Roller coaster. The fact that I was able to be there for a week and I was able to get up every day and stay up and do things all day gave me hope that remission is close. A few months ago, I definitely would not have been able to go to Disney and experience everything I did.
Something that helped keep my spirits up and my pain down was all the gluten-free food I was surrounded with. When we would eat in our hotel, I was able to order “normal” food, like a cheeseburger without the bun. I could eat one of the many gluten-free desserts they were offering. When we were eating at a restaurant in the park, we would tell them about my restriction and the chef would come and talk to me. At one Italian restaurant we went to, they said I could order anything I wanted and they would make it with gluten-free pasta. At another restaurant, they made me a gluten-free brownie sundae for dessert. At one restaurant we went to for breakfast, the chef made me my own special platter with gluten-free Mickey-shaped waffles. Without these options, I think my trip would have gone a little differently. I am so thankful for my best friend and her family, and that I was able to go on the trip with them! My trip was exactly what I needed to keep going!
When I got back last Tuesday, I was already planning on not going to school Wednesday, just so I could catch up on sleep and be ready for school. I’m glad I planned on that because I ended up getting “normal people sick,” meaning, I thought I got some sort of a common stomach bug that was going around. I didn’t go to school Wednesday and went only part of the day on Thursday. We figured out that I started one of my antibiotics on Wednesday, and that’s actually what caused me to feel so sick. So I stopped taking the medicine, and started feeling better.
I have been on this particular antibiotic before and never really noticed a herx reaction. For those who don’t know, a “herx” reaction is when medications cause your body to suffer through more severe symptoms of the Lyme because they draw it out of your system. For some reason, now, this particular medication makes me herx horribly. Herxing is good, because it means the Lyme is dying, but I need to be able to function while I’m herxing so I can go on with my life.
I am trying to get caught up in school since I missed so many days, but it is very difficult. I am trying to learn the stuff I missed but also trying to remember what I was learning before I left which is not an easy task—especially with Lyme Brain. My Lyme Brain has been pretty bad lately, especially when it comes to concentrating on something. Like right now, for instance, it is taking me a really long time to write this because I just can’t stay focused on it.
On Saturday morning, my mom, sister and I went to Johns Hopkins University to watch my fellow Lymie, John Donnally, finish his 4,000 mile bike ride across the country to spread Lyme Disease Awareness. My mom and I have been in contact with John since the beginning of his trek, and I am so glad we finally got to meet in person. John is such an inspiration to Lymies everywhere. He is the image of someone who has battled Lyme and won. Many Lymies can’t even walk right now, so that fact that John was able to bike 4,000 miles is amazing.
Whenever any of my Lyme friends tell me they feel like giving up, I tell them about John because he is our proof that things do get better. Even though John has been in remission for a little while, he is still fighting our fight. He didn’t give up on us. The sad thing about Lyme is, so many Lymies want to help, but can’t because they are too sick. When some finally do reach remission, they just want to forget their whole Lyme experience. I am going to be like John. I will not give up on my Lymies. They are my family now and family doesn’t give up on each other. I will keep fighting so no one else has to fall victim. I will keep fighting until we have a cure.
I want to thank John for showing us that the battle isn’t over. In fact, it’s just the beginning.
Bite Back for a Cure!
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