Lyme Girl

October 21, 2008
In my sixteen years of living, I can honestly say that I never once thought my life would turn out the way it did. Sometimes I wonder if this is all just a big dream, and I’ll wake up early to get to my next soccer game; but I know in my heart that it is real. That I am very sick with Lyme disease, and probably will never be the same person I was three and a half years ago.

When I first went into the wheelchair in 2005, I kept telling my friends, and myself, that it was just a temporary thing. There was no way that I would stay sitting down forever.

But my knees and my back said other wise. A short temporary detour turned into a struggle with doctors not believing I was in horrible pain, and me questioning whether it was worth it to live.
Throughout this time we went from doctor to doctor asking them to help me. But they all said the pain was all in my head and I just wanted to get out of school. We went to some of the best doctors in the world. When that many people have told you you’re faking it, it starts to get to you.

Finally, seven months after I was introduced to my new life on wheels, we found a Lyme disease specialist who told me that I was indeed very sick, with a horrible disease that has a lot of controversy about it. He sent me home with hope that I could get better, the fact that someone did believe me, and also the challenge of not eating any sugar, because long-term antibiotics and sugar don’t work well together.
Even though we now knew what was wrong with me, the months following went from bad to worse. I was not only forced to use a wheelchair full time, but I became bedridden also; not able to sit up straight for more than a minute because of the horrible stabbing pain in my back.
Throughout this trying time I always had my friends by my side. They would come over right after their school ended and we would play computer games to distract me from the pain. I know now that I was very lucky to have such good friends, not all people have friends that would sacrifice a lot of their time to make you feel better. But even though my friends were great, it seemed like nothing or no one could help me.
The Lyme spread all throughout my body and into my brain making it nearly impossible for me to concentrate on anything or remember anything an hour after it happened. I don’t remember much from this time, but I’ve read my journal and heard stories and it wasn’t a happy time.
It seemed like the more meds I took, the sicker I got. Finally my Lyme doctor told us about a treatment called Hyperbaric Oxygen Therapy, which is where you sit in this submarine-like tank and the pressure changes as if you are going down 40 feet below sea level. It had helped many people with Lyme and we hoped it would for me too. My mom and I packed up and moved to Chico, the city where the treatment was. For the next two months I had treatment two hours a day five days a week, and got to come home on the weekends.
By the time we had finished, my pain wasn’t any better, but my neurological problems had lessened. Back at home full time, I still had problems with depression and horrible pain all throughout my body. Since I needed to lean back because of my back pain, I couldn’t use a regular wheelchair to get around so I was stuck in bed all day, everyday.
I used this time to teach myself how to film and edit videos that I did with my friends. We had fun doing the videos, and then later I enjoyed putting special effects into them.
In August of 2006, over a year after I had gone into the wheelchair, and nine months of me being bedridden, we learned I could get a specialized wheelchair that leaned back in a reclined position. This meant that I would finally be able to go out to a restaurant, which I hadn’t done for almost a year.
The days leading up to me getting a new wheelchair went by slowly, I couldn’t wait to start my new life in a wheelchair that would allow me to actually be a somewhat regular person.
On August 9, we got my wheelchair and brought it home. I was insanely excited, but I also felt sad. I loved the wheelchair and I loved that I was able to move around in it, but since it reclined pretty far back, it made it a really big and long wheelchair. I was used to my little rental one that was small and didn’t take up much space. This one really made me stick out and get people’s attention, something I didn’t want. I just wanted to look normal, and that night when my Mom and I went out to Mexican food, I felt very self-conscious.
Now that I was able to get around outside, we decided that in a month when school would start, I would go to school for two classes: drama and Spanish. Even though I now had a wheelchair that I could get around with, it was still very uncomfortable for me, and I really didn’t feel comfy anywhere but my bed. It was a hospital bed that was in the perfect position; my back reclined and my knees brought up at just the right angle.
The next few months went by and I ended up dropping the drama class, it was just too much for me to handle at the time. I took pill after pill, but nothing seemed to get me any better. Finally we decided something had to change, and my Lyme doctor told me about this naturopathic doctor in Nevada, so we went to her. It was a two and a half hour drive from our house, which was very hard on my back but we did it anyway.
She tested me for many different things and found out that I had a lot more than just Lyme wrong with me. I had two other co-infections (diseases from the tick that bit me) and I had issues with mold, viruses and environmental toxins. She gave me many more supplements that I had to take, which was definitely to my dislike. Pills are something that you get very familiar with taking when you have Lyme, it’s something that you get used to, but you never like. I got up to taking 67 pills a day, and most of them tasted horrible.
We had a lot of issues finding juices that I could take with my pills, because after I would use a juice for about a day, I would get sick of it and gag just thinking about it. This was not the only problem we had; school was also a big issue. Since I had dropped out of school two months after my eighth grade started, and I had only taken one class during my ninth grade, I was very far behind in my classes I needed to take to graduate high school. We tried doing an online Algebra class, but it was torture for me to do because of my concentration problems. I would learn something and then completely forget it by the next tutoring session. Going to my Algebra tutor was a very confusing and unhappy time that I dreaded. The more we went to the naturopathic doctor, the easier it was for me to get school work done, and finally we finished the first semester of Algebra. That was such a big accomplishment for me; I had never pictured me actually passing it, but I did.
After the first semester was done, we took a break before starting the second one. During the summer between my ninth and tenth grade my mom and I went up to Nevada many times to do detoxification treatments with the doctor. I never really felt any better from the treatments, in fact, I started getting worse symptoms, like horrible pains in my ribs. She said that as my body was getting rid of the bad stuff, it was starting to feel the pain of the co-infections that had not been able to surface because there was too much going on.
Even with my new symptoms I was able to go to 10th grade and finish both a year of drama and a year of English. Being at school for two and a half hours was very hard for me to do, and a big issue I had was that no one realized how sick I still was.
People saw me at school and just came to their own conclusion that since I was back at school, I was feeling better, which was not the case at all. But what really frustrated me were people’s comments. They would come up to me and tell me how great I looked, and that they were so glad that I was better, when they didn’t know how I felt at all.
People also told me how lucky I was that I didn’t have to go to school full time and that I got to stay in bed all day. Not a single one of those people knew how much pain I felt every second of every day, and how much strength it took to not burst out crying at school from the stabbing sensations I felt constantly in my back. They figured that because I was smiling or laughing, I was completely fine. Smiling and laughing was my way of getting away from the pain, and being as normal as I possibly could. It was a way to stop me from thinking about the pain and the misery I felt all the time.
Even with people’s hurtful comments, by the end of my tenth grade year, with a combination of independent study and online classes, I managed to finish all of ninth grade and all except one class of tenth grade requirements.
I know that I still have a long road ahead of me with a lot more pain, pills and treatments, but I do feel like we are on the right path. I have goals that I am trying my hardest to accomplish, like graduating with the rest of my class and going to a community college. I also want to get a job working in the film industry, and helping out with Lyme awareness. And like most other sixteen year olds, I want to get my driver’s license and have my own car; to get there will be a lot of hard work, but I know that with my friends and family by my side, I can get through anything.

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