There's something you may not know about me, and it’s something
I have chosen not to really talk about - I have a tick-borne illness called late stage Lyme disease and have been struggling with it for 7 years now. During my
eighth grade year, I was doing very well in school and was very active with my
school and dance studio’s dance teams. Then because of a tick bite, I began
what is turning out to be the fight of my life. I have decided that it is
time to start talking about this "thing" that has had such a profound
affect on my life. I thought if I didn't talk about it, I would feel normal.
I didn't want people to treat me or look at me differently because of my
struggles, so I tried to hide it. As it turns out, it has only created
isolation, as well as misunderstandings about what Lyme disease really can do
to a person. I'm tired of Lyme having control over me, so I am fighting
back by sharing my story.
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
became sick with a high fever, debilitating fatigue, body aches, and a constant
severe headache. I literally slept for weeks. I was diagnosed with Mono
and was told it could take a couple of months to get back to normal.
Those couple of months passed, and not only was I still sick, but I was
having even more problems. 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. 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.
With Lyme, each day is different, and I have different
sets of symptoms every single day. One day the worst can be pain and another
day could be my heart. I've been having a really rough week.
During the Alabama game on Saturday, I got really lightheaded and things went
“black” as I felt the blood rushing to my head. It was pre syncope (passing
out). I ended up having to leave early and finished watching the game on my
sofa. When I tried to get up, I couldn’t move. I was very weak, and my body was
aching. The past few nights, I’ve been waking up in the middle of the night to
my jaw locked and in excruciating pain. It’s made it very difficult to talk or
eat. My heart has been pounding, I’ve been dizzy and having balance problems,
and I’m mentally out of it. Oddly enough, this downfall is actually a good
thing with Lyme. It means I’m responding to treatment (more on that to come).
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 as I said earlier, 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.
