How has Lyme Disease affected your life? What inspires you?
Where it all started
It started when I was 10 years old. Maybe I was 8, the verdict is still out and will probably never be fully confirmed. Every summer, my family goes up to a cabin on a lake in Wisconsin (the pic on my first blog post is one of the prettiest sunsets I’ve ever seen there, so much beauty!). This little town in Wisconsin is my happiest place and I feel so safe there surrounded by my amazing (and huge) family.
One hot July morning, I was walking up our enormously long driveway with my dad, surrounded by the quiet trees, when I felt a small bump behind my ear. I asked my dad to look at- I thought I must have grown a new freckle or a lady bug or something. He looked at it and without saying a word, my dad picked me up by the shoulders and ran us into the cabin. He grabbed tweezers, naively plucked the bump off, and showed it to me. I saw a little black dot with legs, no bigger than a popcorn kernel. Small but might, a tick. And in that moment, we celebrated because the head came out with the rest of the body, which we thought was great! It meant the head wouldn’t be floating around my body or swimming in my bloodstream?? LOL. We had no idea.
Not knowing much about ticks, we flushed it down the toilet and went on with our day. That was the start of it. A week later, I had a 104 fever for 5 days, the flu if you will. I was SICK. So sick. I remember it all vividly but it was such a blur at the same time. People coming and going to check in, me hearing their voices but not being able to move a single muscle. This was my first symptom of Lyme Disease. At the time, we didn’t connect it to my tick bite at all. We were truly clueless. Today, tears well up in my eyes as I write this because I have so much empathy and love for that little girl who had no idea just how much that tiny insect would change her life forever. I have learned SO much through this entire journey. I want to jump right into how I’m currently doing because I’ve come such a long way, but that wouldn’t honor the rollercoaster ride I’ve been on to get here. So this was the beginning. Everyone has to start somewhere! And this was my somewhere.
My chronic lyme disease diagnosis
I found out that I had Lyme disease in January 2019. I wanted to share that story with all of you in hopes that it helps at least one person feel less alone in their own journey. So here we go!
How I felt in my body is hard to explain because I truly thought that everyone felt the way I did. That’s just what I thought the human experience was- achy muscles, brain fog, complete and utter fatigue. That’s just life! I would wake up miserable and tell myself that everyone is dealing with this feeling. Everyone experiences this uncomfortable sensation and I am being a baby about it. How could life possibly be worth living if I felt this miserable all the time. I know that sounds dark, but it is a thought that I frequently had. I went to therapy (which I love and highly recommend for everyone), had a yoga practice, journaled, and ate healthy foods… I was doing all the things and I was still miserable.
One of my favorite podcasts that I still listen to today is called Soul of Fire by Jordan Younger of @thebalancedblonde. I love how Jordan is so connected to her higher self and how eager she is to constantly evolve into the best version of herself. She also has Lyme Disease. In one episode on her podcast, she spilled all the details about how she felt previous to being diagnosed with Lyme and I could hardly believe what I was hearing. It was like she was in my body. Everything I felt for so long but struggled to explain, was being explained right before me. I couldn’t believe how much I resonated with everything she was saying. My cousin was diagnosed with Lyme 10-15 years prior, so I had heard of it, but never even considered it to be something that I was living with.
The next day, I called a doctor’s office and scheduled a routine check up. The only available time was 3 months away. Not ideal but oh well. A few days before the appointment, I was out for a walk in our neighborhood when the doctor office called me to tell me that the doctor was actually out of town and there were no other doctors available, so my appointment was canceled. I was shocked, confused, and so upset. I had a full blown meltdown right there on the sidewalk. I was crying, couldn’t breath, and felt hopeless. It was totally an over reaction, but that appointment was supposed to help me figure out what was wrong with me and it was just canceled. I called my husband SOBBING. He could barely understand what I was trying to tell him because I was crying so hard. He helped me breath, calm down, and regain my composure. He encouraged me to call them back to see if there were other options. He said, “This reaction you are having right now is exactly the reason why you need to call them back, Lauren. A canceled doctor’s appointment typically isn’t a huge deal, but right now it is to you and we need to figure out what is going on.” So I called them back and I set up an appointment with an RN.
A few days later, I was sitting in the doctor’s office. I explained my medical history and she said we could do some routine blood tests to see if anything stood out. I also asked for a Lyme Disease test, which she said was unnecessary. I asked again, knowing that if there was ever a time to advocate for myself, the time was now. She took my blood, sent them off to the labs, and I went home to wait. Three days later I got a call from the doctor office with my results. Before she even told me what they were, I knew they were going to be positive for Lyme. I’m not sure why or how, but I had a deep knowing. And spoiler alert, the results were positive. She told me it could be a false positive and the results were already on their way to the second round of testing called the Western Blot Test. A week later those results came back positive, also.
Finally having an answer was such a weird feeling. I was not surprised at all when she told me I had Lyme Disease. When I called my husband to tell him the news, he was just as unsurprised as me. I mean, the results sucked and it was really unfortunate, but we were both so thankful for an answer. My symptoms were not in my head, I was not crazy, and I felt so much validation. To anyone who is going through something, unsure of what “it” is, I SEE YOU. Keep searching, keep talking to your doctors, keep advocating for yourself. Your health is the most precious gift of all. If you ever need someone to practice an advocation conversation with, to vent to, or just talk things through with, please know that I am here. I love you! Thank you for allowing me to share my journey!
I am so excited to share everything I’ve learned and everything I continue to learn daily. I have so much more that I want to share with you. Remember to sign up for my newsletter so you are the first to know when a new post goes up! Love to you all. Talk soon! 🙂