Hi, my name is Jessie, I am 43 years old, and a little over 10 years ago I was diagnosed with Lyme disease, chronic Bartonella, and Babesia.
Like many chronic illness patients, my infection began long before my actual diagnosis date. My story begins at 9 years old when I was washing the family dog. She had a lot of fleas and ticks that summer and as I soaped her up, they began crawling all over me. At one point I noticed they were also inside the soap bubbles on my hands. Without thinking, I scratched my head which transferred one to my ear. That tick eventually crawled inside my ear canal where it bit me. I remember the pain being excruciating, with my screams my mother came running out with a pair of tweezers and plucked it out.
The unfortunate part to this story is that we lived in Hawaii where no one was educated about the disease potential of ticks. Not even the doctors. So, shortly after the bite when I got a fever of 105.3 and was riddled with pain and disorientation, my family chalked it up to a simple flu. After that, nothing was ever the same for me again. For the rest of my childhood and young adult life I was the person who got every cold, flu, or sinus infection. My immune system was constantly in battle and between the times I wasn’t “down for the count”, I found myself spending it always “catching up” with life i.e., working out to rebuild my body, or catching up with schoolwork, or catching up with a simple social life.
My family was military and growing up we were raised with the belief that it doesn’t matter if you’re sick/injured or not, you just get up and face the day. So even though my body was sending constant messages of pain and discomfort physically and emotionally, at an early age I learned to ignore them which inevitably shut down my capacity to recognize my own needs. By the time I turned 30 years old, I began losing the ability to ignore myself and my symptoms grew very serious. Aside from textbook symptomologies of Lyme disease, I also had a few that were so odd and strange it even stumped the most experienced Lyme literate doctors. I was sweating blood, suddenly speaking backwards, and completely forgetting how to walk downstairs. By the time I realized I needed help, I couldn’t remember what the colors of the traffic lights meant while driving, and had begun to train myself to follow what other drivers where doing (like slowing down or speeding up) just to get myself home.
Treatment for my Lyme disease finally began at age 33 where I spent the following five years bedridden and alone. I suffered like many of my Lyme disease comrades; sometimes succumbing and surrendering, other times suicidal, but most times so exhausted and left wondering if my life had turned into a never-ending Dark Night of the Soul. How much more could I endure? But shortly after those years of intensive treatments filled with IV’s, antibiotics, anti-malarials, herbs, supplements, you name it I took it, my body began to pull through. A year later I met the most wonderful woman in the world, my soul mate, and 5 years later we were married. I won’t say that I am cured today because I am most certainly not. However, I live with a little more wisdom gained from experience and even with the crippling effects of my joint disfiguration, the onset of random and sudden fevers, the feelings that my skull will come apart due to swelling, I’m still here and still in treatment. I’m also learning how to share this life of patient-hood and chronic illness with my heart. Not just with my partner but with everyone. Falling in love with myself had to come first, then I had to learn how to share that love well with others. Today I take the responsibility on HOW I want to be sick and remind myself that it is still my choice even when every other choice has been stripped of me. I don’t know what my future holds but if I can help one person outside of myself to find their way through this darkness then every moment on this path has been worth it.