I was diagnosed with an autoimmune disorder at
15, although my symptoms probably started a year before that. I was an athletic
child my whole life and had no physical or dietary restrictions. I grew up with an older brother, who I was always trying to keep up
with, along with athletic friends. I played for the school basketball, cheer leading, and volleyball teams. I fell in love with volleyball at 10 and tried out for a club team at 14. I was about to start high school and came from a private school where no one was going to the same high school, so I wanted to have a sport
where I would meet people and make friends over the summer. I made the high
school volleyball team, made friends, and was the Co- Captain. I finished the
season as Co-MVP along with the other captain of the team. That summer I
started to develop migraines, that came every month, wheezing
when doing physical activities, and other abnormal problems. I went to my
pediatrician who prescribed me with a migraine medication, and an Albuterol inhaler
to take before heavy activity diagnosing me with exercise endued asthma. I went back
to school that fall a Sophomore, and a returning player to the volleyball team,
running drills and Moorpark Miles. My mom could see my form and stamina declining. I started playing less going from the top to the bottom.
At the end
of the season, going into conditioning, I was off balance and
walking was difficult. I would trip at school and need to hold on to friends to
get around. The day before Christmas
vacation my last class was volleyball conditioning. We started to warm up with a run on the track. I could barely even remember how or what running was
supposed to feel like. As I started to go around, looking like a baby horse
just discovering her legs, I tripped multiple times falling, skinning my knees, while friends laughed at me and my coach told me to keep going. I went home
that day crying to my mom that it felt like I had never ran before. She took me
to our local chiropractor, who ordered an MRI to be done that day. He got the
results later that evening, calling my mom and telling her I needed to go to
the hospital.
I had white matter on my brain, was put on IV prednisone, and
spent Christmas in the hospital. I was able to walk again after and was released
with the diagnoses of ADEM, a Transversmeylitis. Sent home on a 5 week tapper
of prednisone and told I’d be back to normal after it was finished. It was just
a onetime event, although cautioned relapse was possible. Doctors called it a miraculous
healing. Shortly after I was off the prednisone other symptoms emerged. I
couldn’t void my bladder or bowls (sorry TMI). We had started seeing a neurologist
at Children’s Hospital for a second opinion. She was under the impression that
it was not ADEM but NMO and put on Imuran. In spring I went back to the hospital, this
time Childrens Hospital, with similar symptoms and inability to void my bladder
quickly put on the same treatment of IV prednisone.
I spent Easter in the hospital and was
released a few days after. Again another miraculous healing. I returned to
school my junior year, unable to handle the stress, I started independent
study. In the fall I was admitted to the hospital to coordinate with all the doctors to look
at my case, and released a few days later. Leaving the hospital I was overly
tired and had a bladder infection, but was sent home with an antibiotic. A few days
later I woke up unable to catch my breath. My mom drove me to our local internist,
also a pulmonologist, he put me on oxygen and took an X-ray of my lungs seeing that there was granuloma all over. He sent me to Children’s along with an
oxygen tank.
When we got there they would have sent me home, not thinking that
I was that bad and not being able to open the imaging, if it weren’t for the
picture my mom took on her phone. I had had an allergic reaction to the Imuran
which caused my lungs to shut down. I was admitted and at some point intubated
and put in a medically induced coma. I don’t remember much after that except,
what I’ve been told. I spent 45+ days in the hospital, was put in the ICU, had
a chest tube inserted, PIC line and was given the drug IVIG (intravenous immunoglobulin) . At some point my mom
had received an email saying that I had a positive test for lyme. They put me
on routine treatment of IV Rifampin and Doxcycline. I got better and was soon
released.
I still receive IVIG once a month, in home, and take prednisone along
with medication to help relax my muscles. We have been to UCLA and the
Mayoclinic to find answers, but haven’t been able to get a clear one. Lyme is
the only thing that I have tested positive for, which we treat, along with the Meylitis.
I started training which has allowed me
to stay in shape and moving. Movement is the only thing that continues to help
the stiffness in my legs. I try my best to eat healthy, but I’m human, and stay
in motion. I finished my senior year at Moorpark High in 2016 and was able to walk in
the graduation ceremony. I took a year off of school, not starting college, and getting myself back to a good place physically. About 6 months ago I broke my
arm and started using a cane to get around, which I am still using, but it is
my goal to get to a point that I am strong enough to not need it. I will be
posting simple exercises and stretches that have helped me to feel good, in
hope that this will help someone else.
Hope
you enjoy