Sharing my story has never been an easy thing for me, especially when it includes things that are very real, personal, and difficult. But I have come to a time in my life where I believe my story can be helpful to other people, and if even one person reads this and finds it encouraging then I will be content. I also want to bring awareness to Lyme Disease and hopefully provide other people with information and ideas about how to begin their journey to recovery.
I have always been a busy, active, and motivated person. I was involved in both dance and music for a big part of my life. I began dancing at the age of 7, and continued until I graduated high school. Throughout middle school and high school, I was extremely involved in dance, eventually going 5 (sometimes more) days a week to the studio to practice and rehearse for hours at a time. I gave up many other opportunities, like spending time with friends or doing family activities, just so I could keep dancing. It was my biggest passion at that point.
Looking back I believe I was infected with lyme as young as 12 or 13 years old. Growing up we were a very healthy family. We are organic food, didn't eat tons of sugar or cheap, little snacks. BUT we camped a lot. We went around MI, some to the east coast, down south, really just different places to explore. Us kids would run around with no shoes on, especially in our own back yard. It was wonderful. Although perhaps that was how I got lyme. It doesn't really matter at this point. Sometime during middle school - I don't remember exactly when - I became very weak and dizzy. I really just felt "not myself". I didn't feel like I could make it through dance class; I was weak and tired after taking a shower. So we finally went to see a naturopathic and he discovered a virus in my spleen that was causing all these problems. He gave me supplements, etc., and I took them and began to feel like my normal self again. Whew! Then fall of me turning 15, (my birthday is in Oct.) I became so out of breath that I could hardly do the jumping in dance. So once again my mom called the naturopathic doctor and I was told to take calcium. This worked really well and soon I was back to normal.
But then something big happened. May of 2010 I caught chicken pox. Well all my siblings did. But I had such a horrible case of it. During the infected time I took the things our naturopathic doctor recommended. But I was still so sick. I couldn't do my ballet exams that I had prepared all year for. One day I lost sight in my right eye for a short time, but then I woke up the next day and my left eye had lost all of its sight. I couldn't see at all with it. I remember laying on my bed and my sister and brother we around me - we were expecting it to go away like my right eye had. But it didn't. To the best of my memory it lasted all day and possibly some of the next. Then once I was regaining my sight again it was blurry and strange, it didn't feel normal. I really don't remember all the details, but I do remember that it took me at least two months to gain my energy back and feel like myself again. Definitely not normal. Looking back I realize that my immune system was so burdened with my lyme and co-infections already that when the chicken pox was added I just crashed really hard. Anyway, my eyes were still weird and blurry, so mom and I went to an ophthalmologist. He didn't know exactly what was going on when I explained my symptoms to him, but he did do a thorough exam and saw that my eyes were inflamed and dry. He plugged my bottom tear ducts so that my tears wouldn't wash out so quickly. (they are still plugged to this day and I am grateful for that because I still have dry eyes) He prescribed hydrating drops that I would use multiple times a day and also drops to help the inflammation. It did help actually, especially with the dryness.
The years leading up to graduation I started thinking about what I wanted to do with my life, and what I wanted to go to college for. I had always known that I wouldn't be a professional dancer, and it eventually became clear that I needed to shift my focus from dance to my love of music and the flute. At the end of my junior year in high school, I had a faulty land out of a jump and injured my knee. I had no way of knowing at that time how much grief that injury would cause me. Two specialists, 6 months, an MRI, and 8 weeks of physical therapy later, I finally had an answer as to what was causing my knee pain. I had torn part of the cartilage under my kneecap and needed to have surgery to repair it. Meanwhile, I had pushed myself through the pain and frustration to perform in what would be my last recital and ballet examination. I ended up having my knee surgery in November 2011, and spent the next three and a half months in rigorous physical therapy trying to get my knee back in shape. I tried to get back into dance that winter, but it didn't really work out.
During my senior year in high school, I spent more and more time with my instrument, and fell in love with performing more than I ever had before. In January of 2012 I was chosen to perform in the All-State High School Orchestra at the Michigan Music Conference in Grand Rapids. It was during that three-day trip that my life was forever changed and I knew without a doubt that music was the career I was going to pursue. I auditioned and was accepted into the music program at Oakland University, and that fall I joined OU's flute studio. The next two years were a whirlwind of homework, practicing, and performing, and I grew more and more as a musician each day. Now rewind a little...The crazy thing about the lyme bacteria is they can survive dormant in our body for years and cause absolutely no problems or symptoms until something triggers them to "come alive" again. I believe the moment I had my knee surgery is when it all started for me, that was the moment that triggered the lyme bacteria in my body to start doing their damage. Anesthesia is like super food for these bacteria, so that no doubt sparked an uproar and the dose of antibiotics they gave me the bacteria certainly became angry about. Along with the mere fact that surgery is a fairly traumatic event for the body to go through, so I'm sure my body was weakened and the bacteria had easy access to take over. Over the next year I began having lots of lower back pain. Sometimes it was so painful that I couldn't sleep, and I had to always be shifting positions because sitting hurt so much. The pain would travel down my legs too, and they would ache all over, especially after a long day. I honestly thought this was normal, that everyone had these aches and pains, but looking back I realize that I was very wrong. It is interesting that we can become so used to our body's complaints that it becomes our new 'normal'.
The summer of 2013 was a strange summer for me. I couldn't really identify how I was feeling, but I knew that something wasn't right. I was more tired, had headaches, was losing my motivation, and just didn't feel like myself. I saw my naturopathic doctor who diagnosed me with IBS and started me on a gluten-free diet and a ton of supplements to help heal my stomach. That fall I actually saw a huge improvement, and felt better than I had in quite a long time. But unfortunately it would not last. Winter semester of my sophomore year was very stressful, I was taking a heavy load of classes and working both Saturdays and Sundays. I suppose the lack of sleep and extreme stress took a big toll on my body, because it was at that point that things really started getting bad; my body had crashed. I began having symptoms similar to low blood sugar: shakiness, dizziness, and fatigue. But these would come on suddenly, and it didn't improve when I ate food. I began having migraines, and the fatigue kept getting worse. I took two classes in summer semester one, and barely made it through, it was just too much for me to handle - I was also working several days a week. during that time
And so began the process of seeing doctors, each with their own opinion about what was wrong with me. The most common diagnosis was that I was 'stressed', and needed to relax. The next year was very frustrating as we searched for answers, to no avail. And I just kept getting worse...I was having a hard time keeping up in school, and practicing my flute was becoming very difficult. I ended up quitting my job in December, and spent the whole month of break doing nothing but resting, hoping that the relaxation and a new diet would help me feel better. But soon after starting school in January I knew that was not the case. Things got so bad that I spent all my time in bed when I wasn't at school or my new teaching job. I couldn't practice anymore, and was becoming so weak and dizzy that the simple task of walking was difficult. So I made the decision to drop out of school at the beginning of March, I just could not keep up with the demands of my major anymore.
Since then I finally found a doctor who diagnosed me with Lyme Disease and have begun treatment. It has definitely been a hard journey so far, and will continue to be - fighting lyme is like an uphill climb. But I will persevere. The thought of being able to play my flute again and go back to school with my friends helps keep me going. It is hard watching everyone continue with their lives around you while you have no choice but to be still. But I am learning many things by being still, it gives perspective to everything. And I am trusting in Jesus to be my strength and guidance during this process, he already knows the whole plan.
Update February, 2016: After beginning treatment for Lyme Disease in April 2015, I saw a small improvement in August, but when the fall weather hit I became very ill again. Since that time I have continued to worsen, and haven't seen any more improvement from my current treatment protocol. I have become so sick that even the smallest thing is difficult. I have also had to quit my dream job. Because of this, my family and I decided I needed to switch doctors, realizing I was a more complex case than we originally thought. So I began the process of researching again--much like a year prior when I first started learning about this illness. After much thought and prayer (and research!) we decided which doctor we would turn my health over to next. In March 2016, I traveled to Washington D.C., to see one of the top Lyme specialists in the nation. This is a huge commitment for both my family and I; I never thought I would be here, making these kinds of decisions. The places that suffering and desperation leads us to...
Please read my blog to keep up with my treacherous journey.