My Battle With Chronic Lyme Disease
My Battle With Chronic Lyme Disease
I went back and forth for a while on whether or not this was something I wanted to or needed to share with our followers. After attending a charity event hosted by the Global Lyme Alliance this past Thursday with Mel, I realized it’s not about whether I should share this story, it’s about why I NEED to share this story.
I have always prided myself in the fact that I was a strong and independent woman. I didn’t like going to everyone with my issues and I kept a lot of things to myself. This is all fine and well until you start to realize that something is very very wrong and instead of telling your support system straight up what your issues are, you hide behind your “I’m okay smile” and act like nothing is going on.
It was the summer before my junior year of college that I started to think something was wrong with me, but I kept everything I was going through to myself. I was in college! I wanted to go out with my girls and flirt with boys and not spend my nights trying to tell anyone that I felt lost, depressed, sick, scared, and alone. So I put that smile on and went on with my life. That’s the thing about some illnesses, you can’t always see the struggle someone is going through on the outside. But man if you could see what they are going through on the inside...
Soon enough the sickness began to take over. I was picky about who I wanted to see this side of me. My parents and Mel were the main people I went to when I started to feel worse, but only when I didn’t feel like I was being annoying.
One doctor told me I was getting sick so much because of the fact that I started to eat meat again after being a vegetarian for a few years. Then the tiredness kicked in and this feeling that my body couldn’t pick itself up out of bed. I knew something else had to be wrong. That’s when two different doctors told me I had mono. This “mono” lasted for five months before I told my parents that something else had to be going on.
We decided as a family, and Mel lol, that it would be best for my to take the summer after junior year off to relax and go back senior year refreshed. This helped a bit, but two months into senior year the real bad symptoms started to sink in.
My headaches turned into all day migraines and too bright of lights began to make me dizzy. The same doctor who told me it was mono now told me I was extremely stressed out and just needed to learn to relax. I went to another doctor and they tested me for everything in the book, and said I was fine and needed to get more sleep. I was still only talking to my parents and Mel about this all but luckily my boyfriend Mike was now in the picture and I pulled him into my circle of trust.
I remember saying to him “Please don’t think I’m crazy” too many times to count. Looking back now, I was actually crazy. Crazy to think that my personal health should not be anyone's issue but mine and that I could handle something like this on my own. Knowing you have something wrong, but not being able to express it, and no one else being able to see it, is one of the most exhausting feelings in the world. I remember I would make jokes about my sleeping and headaches to try to laugh off what was actually a serious issue that we needed to try to figure out.
That’s where my parents come to the rescue! When I went home for a Christmas break senior year they were the first to finally SEE that something was actually wrong, not just hear me say it. I began to get terrible jaw pain that would put me into tears because I could barely open my mouth. They said this was enough and they wanted me to get a Lyme Disease test because a close friend of my moms was diagnosed with it and I had some similar symptoms going on.
Sure enough, it was positive. It was a relief to finally put a name to what I was dealing with, but I also knew the battle would just be starting if I had this in my body for a while now.
The next two years of my life were not what I expected. I started off trying to find an infectious disease doctor that would take me as a patient. Some said they were full and couldn’t take any more patients, others said they didn’t know enough about Lyme Disease and couldn’t treat me. This was not something I wanted to hear. I finally found a doctor in Indy who would take me in, and soon enough this lady saved my life!
We first tried six months of antibiotics. I am not going to down play this and say it was rough. This was the hardest, most painful six months of my life. I had heard before you might get worse before you get better, but man did I not prepare myself for this.
After taking the test again and it still was positive and my symptoms had not gotten better, we decided to go a more holistic route. I was very hesitant at first. I grew up with the notion that if you are sick, you take antibiotics and you get better. I never realized how much other types of medicine there could be including the medicine of healthy food!
I can go into more of the specifics of what medicine I took and what type of diet I went on to try to change my symptoms in another post. But for now, I want to end this part of the story with two things.
- I am healthy again! I am not cured. I still test positive for Lyme Disease. I will most likely always have Lyme Disease, but I have found a way to manage my symptoms and live a life I want to live.
- Ally Hilfiger was the speaker at the benefit on Thursday and she said something that really stuck with me! Not because she has Lymes as well, so I feel we can relate, but because I know everyone could use this advice when they are going through a hard time, medical related or not. Ally spoke about building a toolbox for yourself. In this toolbox you need to have the list of people who will be your support system no matter what. This really stuck with me! Some people have not always been the most supportive towards me and this battle, and that’s okay. They don’t have to understand if they don’t want to. I have my toolbox (I mean come on friends, Mel flew all the way from Denver to support me at this benefit!), I have a doctor I have come to love, and I found a system that worked for me. I built my toolbox, and I will continue to add to it over the years. I hope I can share my ideas/toolbox with each of you and help change someone's mindset who is going through something, especially if it's Lyme Disease.
Yes I have chronic Lyme Disease. There are some days when I start to feel myself going back to the bad. But I have the tools to now fend this off, fight for myself, and know now that I will be okay, even if symptoms return.
Let’s talk again soon friends! I am happy and excited to share this journey of mine with you all more.
Good Vibes and Warriors not Worriers,