How has Lyme Disease affected your life?
I believe I have had lyme disease since October of 2008. I was undiagnosed for 6 months until I heard of a class mate’s sibling who had lyme and got tested myself. After multiple tests, I got positive one. I never saw a tick or the bite or the rash. I had no idea what or that anything was happening to me when it all began.
I do not like to complain about much and I tried to ignore the, at that time, minor symptoms. I was a straight A student in high school who put a lot of time and effort into my school work. I also ran cross country and indoor and outdoor track for 6 years and was the other component in my identity. I just blamed stress for the changes I initially saw in me and ignored them and kept going. I started to experience increasing fatigue and moderate dizzy/headache spells. My grades started to drop and I found it impossible to not fall asleep in class. My thought process, speech, and memory started to deteriorate. Cross country and track that year became much more difficult. Everything I found my identity in was slowly slipping away.
Eventually, my family started to notice and thought that I got to the point where medical intervention was required. I went to my family doctor for some common stress medication multiple times over the next 6 months. The worst health related injury that had ever happened to me was a severe case of the flu so I rejected the idea that something serious was happening to me. Over the months, I slowly started wondering if something was really wrong and what it was and what it was doing to my body and my life that I worked hard to build.
After the 6 months, I heard of a class mate’s older sister had lyme and how it had affected her. Luckily, I was able to get an appointment with her infectious disease doctor and after he suggested getting tested and a positive results on a third test, get accepted as a patient. At that point, it was summer and I spent the summer mostly indoor and missing out on a lot of good times with friends and was restricted to spending most of my days indoors. That’s when the pills started. It started with around 10 to 30 and at most 69 pills a day.
The next year consisted of everything falling apart even more. I was not able to do Cross country or track. My grades became the lowest they had ever been in high school. The list of symptoms got longer and more severe than before. Extreme fatigue, extreme “brain fog” to the point where I couldn’t even tie my shoes some days, migraines, dizzy spells, hypoglycemia, hypothyroidism, pots syndrome and more. I had to go on various diets to avoid sugars and gluten. Depression started to consume me. I don’t have to explain how alone I was and still am to anyone on this website because everyone already knows what that is like. My body was no longer under my control and in a way, it felt like I wasn’t even living inside my own body any more. As I said in the first paragraph, everything I found value in was taken. I no longer had my self-worth in my grades and intelligence. I no longer had my one and only outlet that was cross country or track. While I still socialized with my friends, I found that communication between them and I became empty and difficult even though nothing had changed between us.
In 2011, the pills had not had any effect to that date so my doctor had me get my first picc line. In the surgery, the pain killer that they gave me for the surgery didn’t have an effect on me and the procedure was quite painful. I ended up having to receive 3 new lines due to scar tissue clogging the line. The spot where the line and bandage covered soon got irritated to the point where I would bleed when the bandage had to be changed each week. My fourth and last picc line gave me a blood clot in my arm which broke free, traveled through my heart, and then came to rest in my lungs. The hospital said it was severe cramps and to rest it off. Luckily I suffered through it and am still here today able to write this story. After that I had the line pulled out. And went back on pills.
Only two of the iv antibiotics ever had an effect. One I was allergic to and made for one rough day and night. The other was the only drug to actually make a positive reaction. It made my health increase to the point where I was able to live a normal life again. That only lasted for a month or two however. The last year of high school my health was so bad that I spent most of it coming home early from school because I couldn’t manage getting through the school day.
In August 2012, my health took a turn for the worse again and I graduated high school and went on to college. College was the hardest thing I have and might ever do. I’m still not sure how I made it through to this day. The first two years are a haze of depression and anger and struggle. It was the most alone I have ever been in my life. College was next to impossible with the brain fog and fatigue. Every class I sat through I had to silently push past what I thought I could in that hour.
April of 2013 I decided, against the advice of my doctor and my own body, I decided to go on a missions trip for two weeks in Brazil. It opened up my eyes again to the world and gave me hope again. When I got back, my health was back to what it was on the good iv drug. I’ve read about multiple things that could have helped my health that was on the trip. I can’t pin one down to this day. Since then, I’ve been off all medicine and have been able to manage a relatively normal life. The last two years of school was just as hard but at that point, but I was more use to school life and learned how to manage my time and energy more effectively to get through it. I was never able to go out and do anything social. I spent all my college days in class or in my room sleeping or working on school work.
I’m currently off any medication. I am able to live a low key normal life. I’m still struggling very much but I’m good enough to keep going and fighting to live my life. I’m very thankful for that fact. I just arrived home from another missions trip to south Africa. The experiences I experienced and knowledge I learned during the trip is immeasurable. I had to sit out some days and miss out on some things I wish I could have done. However, South Africa will stick with me for the rest of my life. In the beginning of January, I am planning on going on a third missions trip to Mexico.
My next goals are to find a job. I am hoping that my brain fog doesn’t make it difficult to do well in whatever job I find. I am also going to become a mentor for high school kids through an organization called Young Life. I am looking forward to helping and sharing my wisdom with the next generation. I still have to fight everything I want each day but my mind is use to the struggle and it doesn’t depress me as much. I am not able to run or do nearly as much as I use to those 8 years ago and I won’t ever be able to again. Every morning I am in physical and emotional pain from the moment I open my eyes and every night I dread waking up in the morning, but I’m content with having the ability to leave my house and being able to go to a job or spend time and socialize with friends.
What inspires you?
One quote I often refer to in my head is “The only thing necessary for the triumph of evil is for good men to do nothing.” (- Edmund Burke) I’ve seen and experienced evil in the world. Lyme disease resting towards the top but not the only one on that list. I can’t change anything about my lyme. But one of the few things that hasn’t been taken away is the choice to keep moving forward. It took me a few years to figure that out but it’s true, at least for me. The one thing that has consistently let me do that is doing the most I can to make sure more “evil” does not prevail in others’ lives. Either on the other side of the world or in my hometown. Helping others is the only thing that I have found through the years that keeps me moving forward.