Tori: Lyme Ain’t Pretty

Reblog
Shared from: Alabama Lyme Disease Association
Originally posted: HERE
Photo Credit, Original Blogger’s personal photo
All Rights Reserved and Retained by Original Blogger

“I grew up a pretty healthy kid, but my life was turned upside down in 2006 after doing clean-up work for a school project on the Cahaba River in Birmingham, Alabama.  I had no idea that spending a couple of hours picking up trash in such a beautiful, tranquil location could bring so much pain and suffering.  A few weeks later, I was at a dance competition and woke up sick with a high fever, debilitating fatigue, body aches, and a constant severe headache. I slept for 5 weeks straight and missed a ton of school.  I was diagnosed with Mono and never recovered. I began having chronic sinus infections as well as new and sudden onset of allergies to a long list of things. After a 2-week round of antibiotics, I would feel better, but as soon as I stopped, I would get sick all over again.

I struggled through the rest of my eighth grade year but still made my high school’s dance team and my dance studio’s competition team for the upcoming year. I danced all summer and felt a lot better thanks to a 6 week course of antibiotics for a sinus infection. School started, and that’s when things spiraled downhill very quickly. After coming down with strep throat, I began having heart palpitations/arrhythmias, shortness of breath/asthma-like symptoms, joint and muscle pain, brain fog, numbness in my arms and legs, and other neurological problems.  It seemed like I had a new symptom every week- vertigo, thyroid and blood sugar issues, and light/sound sensitivity to name a few. I saw every specialist in Birmingham, and I was diagnosed with Dysautonomia, Postural Orthostatic Tachycardia Syndrome, Mitral Valve Prolapse, and asthma, but no doctor could explain why any of this was happening so fast and what the cause might be.  By the last month of freshman year, I was in bed all day everyday.

During the summer, one of my mom’s doctors had heard about a girl my age who had a similar story, so he ran one final round of tests to rule out what felt like was our last hope. It took a month to get the test results back, so I had to start a new school year not knowing anything. I made it through the first 2 days of school before my body had finally had enough. I had to be taken out of public school and homeschooled and had to quit every activity I was involved in, which included what I loved the most-dance. That marked the beginning of the darkest year of my life. I felt defeated.

After nearly two years of waiting, I was diagnosed with Lyme Disease, along with two co-infections called Bartonella and Babesia. I was so happy to finally have an answer because then I could take the appropriate medication, get well, and move on with my life.  Wrong!  The reality was no physician in Birmingham would treat Lyme disease nor did they really know how to treat it because they have been led to believe that “we don’t have Lyme in Alabama” (more on that to come). We immediately began searching for a Lyme literate medical doctor (LLMD) and had to travel to Tampa, Florida for treatment.  Because Lyme was not caught in the earliest stage (back in 8th grade!), it had spread throughout my entire body and required that I have a mediport surgically placed in my chest so I could receive intravenous antibiotics twice a day. I quickly learned that treatment was difficult and involved a lot of trial and error trying to find the correct combinations of antibiotics. Treatment actually made you much sicker before you felt any better. We had to travel back and forth to Tampa for a year, and I was bedridden much of the time.  I spent my days in excruciating pain in a dark room with my sunglasses on because I was so sensitive to light. I lost most all my social connections because I couldn’t keep up.

Later in my junior year, I began to see the light at the end of the tunnel. While I still had some symptoms, the worst had passed, and I was beginning to have more good days. I was able to dance again, and I started getting involved in activities outside the house. I was able to participate in Junior Miss that summer and was actually a preliminary winner in self-expression (evening gown and on-stage question) and their essay competition. My brain felt so much clearer, and I was able to socialize again. Even though I was never able to return to my high school, I graduated (on time!) from a small, private school (for homeschoolers) with a near perfect GPA and several honors.  Being able to do school from home enabled me to participate in extracurricular activities, dance, and re-connect with friends because I still had to take many medications.  I am very thankful that was an option.

Against all odds, I moved in to my freshman dorm at the University of Alabama in the fall of 2011.  I survived the largest rush in the nation and pledged a great sorority.  I was always known as the “sick kid” in high school, so I opted not to tell anyone about my battle with Lyme disease. For a while I was able to get away with it because I was feeling alright, and the symptoms I did have were getting easier to manage. I wanted to just be “normal” and had a fun few months of Alabama game days, going out with new friends, and being on my own. Towards the end of the semester, I started feeling sick again, but I dismissed it as just stress and tried to tough it out for the rest of the year. Then a week before finals, I began having severe pain in my abdomen and back and found myself in the ER having emergency surgery to remove my gallbladder, which had become infected from Lyme. That was the beginning of my relapse, and I haven’t been the same since. One by one my old symptoms returned.

I now travel to New York to see one of the top Lyme disease specialists in the country and am undergoing aggressive treatment to knock Lyme out once and for all.  My symptoms these days range from heart palpitations, low blood pressure, which causes me to almost pass out each time I stand up, shortness of breath, severe fatigue, joint and muscle pain, and severe cognitive dysfunction.  There are many days that I can barely hold a conversation with someone because I mentally can’t communicate.  I can spend all evening getting ready for a party and then be too exhausted or sick to go.  One day you may see me, and I look fine.  The next I could be in bed all day.

 My point here is not to look for sympathy because there are many others with more difficult battles than mine. I am finding it more difficult to “not” talk about what’s going on because I feel at times I am judged for not fully participating in “life.” Over time Lyme patients often feel isolated because there is such a misunderstanding about what Lyme can do to a person. Unfortunately, I have to pick and choose my activities carefully. It’s called survival. We all have struggles.  This happens to be mine, and I’m so grateful to still be in school.

So I’m “biting back”.  Lyme disease is not the boss of me.  I’m stepping out to share my story and raise awareness to help as many people as I can.”

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Southerngal here… Incidentally, Tori makes Lyme look as beautiful as it possibly could. She is the epitome of “invisible illness”. Without a harsh word in her heart, and always with a smile on her face, she pushes through. Don’t be deceived by the misnomer “you don’t LOOK sick”. Trust us, it’s hell.