I am sitting in a coffee shop determined to get all the thoughts swimming around in my head onto paper, but I’m not sure where to start. I guess the best place is just to come out and say it: I have Chronic Neurological Lyme Disease. Saying these words is something I have gotten used to over the last year, but not until recently did I let the meaning and consequences of them truly take hold. You see, I am a stubborn person. Always have been. Since I was a little girl, I’ve had an idea of what my life “should” look like, and who I “should” be. I’ve had a laser-focused determination to be perceived in a certain way: strong, independent, likable, the h a r d e s t worker, always in control. And I was doing a decent job of following the typical steps to what I thought my life needed to look like in order to be a “success”. I had a good job, I made good money, I was climbing the corporate ladder, I always acted like I had an answer, and on the outside, I seemed like I had it together.
Until a tiny little bug changed everything…
THE BACK STORY
Though this all really starts from when I was a little girl (as most people’s baggage does), the catalyst of my current journey started almost 5 years ago. I had just graduated from The University of Texas (Hook ‘Em), and I was on the adventure of a lifetime. I was riding a bike from Austin, Texas to Anchorage, Alaska to raise money for cancer research. This is a cause extremely dear to my heart. I had originally decided to do this ride to help support my dad in his fight with Multiple Myeloma, but he passed away before he could see me cross the finish line. This ride was, and still is, the most monumental time in my entire life. I made the most genuine and true friendships I have ever had, I learned how to push myself harder than I ever thought I could, both mentally and physically, and I was able to grieve and honor my dad in such a special and unique way.
I was 4 days out from finishing the ride and we were in the middle of nowhere Canada at an abandoned campsite called Burwash Landing. I woke up with a huge, bullseye bite on my hand. My immediate thought was that I had been bitten by a poisonous spider. My teammate ended up having to drive me 100 miles to find the nearest doctor in a town with a population of a few hundred people. Once we finally made it to the doctor, he confirmed my suspension that it was a spider bite and sent me on my way with some steroids. I didn’t think about this bite again until 4 years later.
In the four years that followed, I started having weird symptoms that I kept chalking up to getting older and being an adult. I was tired all the time and I started being really forgetful. I remember really noticing having memory problems when my boyfriend at the time kept getting frustrated with me asking him a question a million times or not remembering full conversations we had. It started to worry me, so I went to a doctor to see if something was wrong. The answer I kept getting from every doctor I saw was “your vitamin D is low”. So, I started taking vitamin D, and tried to ignore all the random symptoms I kept getting. It was easy for me to do at first because I didn’t just wake up one day and feel sick, it was a slow and quiet process happening in the background as I continued to act like a productive 20-something.
It wasn’t until I moved to Houston for a new job a year and a half ago that my symptoms started getting to the point where I couldn’t avoid them anymore. I had body aches, joint pain, numbness and tingling in my hands and feet, horrible migraines, brain fog, word retrieval problems, hair loss, blurry vision, insomnia, loss of coordination, heart palpitations, nausea, and I developed anxiety and depression that I couldn’t get myself out of it. The list goes on, but the final symptom that made me unable to avoid the fact that something was really wrong was when I began to lose my ability to read. I was never a great reader to begin with truthfully, but I started to just stare at words without being able to form them in my head. This wasn’t just complicated spelling B type words, I am talking every day vocabulary words. I kept this to myself because, one, I was embarrassed and, two, I didn’t want to be seen as weak. My mom finally made me see a doctor in Houston that was known for helping people with medical issues that other doctors tended to ignore. In December of 2017 I was diagnosed with Lyme Disease. It turned out that red bullseye bite on my hand wasn’t a spider bite at all, but a Lyme-infected tick bite. I still had pictures of it saved on my phone from sending it to my mom when I went to see that doctor in Canada. The date on picture was August 4, 2014. This meant I had Lyme for 4 years before I was diagnosed. Plenty of time for this tiny bite to wreak havoc over my entire body.
THE THICK OF IT
The funny thing is, I had no idea what Lyme disease was, just that a housewife on RHOC had it, so when I was diagnosed, I was actually relieved to have a reason for all these random and annoying symptoms. And in true lyme-brain form, I totally misunderstood the treatment plan my doctor had set out for me. I thought I was going to be on some antibiotic for 8 weeks and would be back to my old self. All my doctor said was “Drink a lot of water. You are going to feel worse before you feel better.” I didn’t have time to be sick, I was too busy being focused on my career and keeping up this façade of what I thought my life was supposed to look like. I spent the next year taking tons of medications and antibiotics, completely changing my diet, and spending the majority of my weekends laying on the couch because I had no energy for anything else. Treatment was complete and utter hell. I had no idea what I was in for. Being so naive to this disease was a huge detriment to me. I was really sick, but refusing to acknowledge it. I kept working 50+ hours a week even when I was in the middle of a really bad herx. (A herx is when a Lyme patient is going through treatment and the medication causes “kill off” of the Lyme in your body which, in turn, causes inflammation. Basically, it makes your symptoms WAY worse before they get better). I would wake up and barely be able to get myself out of bed, my entire body felt like I was run over by a truck, and I constantly felt like I was about to throw up or pass out. But I would go to work anyways, hide in my office, and try to pretend like I felt fine. When I felt like I was about to faint, I would go hide in the bathroom until the dizziness would calm down and then I would go back to working. I was still struggling to read words sometimes and now I was having a hard time even forming sentences. You see, Lyme doesn’t just affect your body, it can also affect your brain. I wasn’t just having physical symptoms, but a lot of mental ones as well. I became severely anxious and depressed. I started becoming a hermit and avoiding talking to my friends in fear of having to face the reality of how sick I was, both mentally and physically. I got pretty good at faking being fine to the majority of people in my life; I was even fooling myself most of the time. It was only late at night, lying in bed with insomnia and no energy left to put up the façade, that I truly let myself feel the weight of this disease. I started having dark thoughts that I had never had in my life. I started to wonder what the point of anything was. These thoughts really scared me and I knew these thoughts weren’t me, but I couldn’t stop my mind from thinking them and my body from feeling them.
Over the past year I have tried many different medications, which I will get into more in later blogs. And I started to feel better for a little bit, but then symptoms would come back and new ones would show up. Now a year out from being diagnosed, I am sicker than when I started treatment. At the end of the day, none of the medications have worked. I have been running from the reality of this disease since the day I was diagnosed, because if I was to acknowledge how sick I was, I wasn’t going to be able to be the person I had worked so hard to be. Over the past couple of months, it has gotten too hard to keep up the façade. I am so tired. I am tired of hiding from this disease, I am tired of trying to act like I feel okay when I don’t, and I am tired of not feeling like myself. This disease has slowly made me a shell of myself. As I write this it is still super hard to admit that. This disease has taken my life away from me. But it isn’t only Lyme’s fault. Over the last year, I wanted to believe I was making my health my top priority. But looking back now, I can see that isn’t true. I was putting work and the desire to live like a “normal” 28-year-old first. But the reality is, I don’t have that luxury anymore. That was taken away from me the minute I was bitten by that tick almost 5 years ago. I have had to really look deep inside myself over the past couple of months as I struggled to find any treatment that would work. As I sit here now, I am still in search of the right doctor with the right treatment plan, but what I have realized is that I can no longer live the life I was living and fight this disease. If I am going to get better, both physically and mentally, from the damage Lyme has done to my body and my mind, I am going to have to make it a full-time job. But not only that, I am going to have to really face myself and acknowledge that life’s not going to look like I thought it would, at least for now.
I am writing this blog post from a coffee shop in Flower Mound, Texas. My home town I worked really hard to get away from, but where my journey has ultimately taken me back to. About four weeks ago, I left my job in Houston and moved back in with my Mom to give myself a real fighting chance to beat this disease. I realized my job, my constant need to be perfect and keeping up the façade of being “normal” was making me even more sick. I am realizing I have a lot of work to do to heal my body and my mind. I am scared shitless and still have a lot of shame in this decision. I am a planner at heart, and I am now living at home, jobless, with no plan. I am having to lean into the unknown, something I am very bad at. I never in a million years thought this is where I would be, but I am slowly coming to terms with knowing this is where I need to be. Deep down I know I wasn’t really happy with my life. I felt like something was missing, but I didn’t know what it was, and I was too scared to listen to that little voice inside my head telling me I wasn’t being true to myself. This experience has made me have to completely stop and reanalyze everything I thought I knew as true about my life and myself. So, though I have no idea what my future holds, a part of me is excited to see where this journey takes me. This disease has been the hardest thing I have ever gone through, and I know I have even more hard days ahead. I want to use this blog as a way to document my journey as I lean into the vulnerability of the unknown. I want to show the raw and real experiences that come with not only dealing with a chronic illness, but also the journey of having to strip yourself down to nothing in order to find your true self. It just took a splash of Lyme for me to get here.