My name is Maggie Barra, and I have been fighting Lyme Disease for 11 years. I am 23 and live in South Orange, NJ, about ten miles from New York City.
Even with Lyme Disease, I was very active and played third base on the Junior Varsity Softball team at Columbia High School. I love softball and long to get out in a batting cage with my Dad to see if I can still hit the ball.
During middle school and high school I was busy at our wonderful church, Morrow Memorial Methodist in Maplewood. One Easter break I was lucky enough to go on a field trip to help rebuild houses in Dulac, Louisiana. It changed my life as I saw how much help the families needed. It also changed my life when we took a three mile pilgrimage on Good Friday -- although I couldn't walk that far so I was helped with a ride part of the way. I will never forget Dulac! And I can never be grateful enough for the support everyone at our church has given us. God has blessed us, and we know it.
I love movies and studied film in college. Every year I predict the Oscar winners with 90% accuracy. I love a wide range of movies -- from silly ones like The End of the World with James Franco to the wonderful Lord of the Rings and Hobbit movies to foreign classics like The Bicycle Thief.
I am also a writer and have published several articles on TheAtlantic.com and Truthdig.com. These were interviews with an actor and two directors, and the response was terrific. Vulture even recommended my story on babysitting the child actor in Moonrise Kingdom: http://www.vulture.com/2012/06/sunday-reads-jared-gilman-kenneth-lonergan.html
But my true passion is history, especially British history in the Tudor era. I am a voracious reader. I used to help my mother rescuing cats and kittens before I became homebound. My favorite TV show last year was American Horror Story, but this year I think it's The Affair and Sons of Anarchy. Being able to stream movies has probably kept me from losing my mind.
Lyme Disease is one of the most frustrating illnesses you can have. It is transmitted by a tick the size of a period in a sentence, most people don't even know they've been bitten, and it is hard to diagnose.
There is no cure and, worse, many doctors don't acknowledge that chronic Lyme -- the later stages of the disease, which I am now in -- even exists, although tens of thousands of people suffer from it. Because of this, health care insurance does not cover treatment of chronic Lyme.
When I first became ill I suffered extreme joint and muscle pain. I took oral antibiotics for years , which would help for a few months, but now my intestinal system is so devastated that I can no longer tolerate them. I managed to make it through high school and was in my second year of film studies at Montclair State University when I became so sick I couldn't function and had to leave school and come home. This was three years ago, and the past three months have been the worst of my life.
Today I suffer from extreme stomach pain, crippling headaches, and near unbearable pains all over my body. I have nervous "jolts,' as we call them, that can make me drop anything I'm holding or lose my legs and hit the floor with no warning. I cannot even get up to cross a room without letting one of my parents know so they can make sure I get back safely. If the jolting is really bad, I have a convulsion during which I lose consciousness with my eyes rolled back in my head as I shake uncontrollably. I am rarely free from pain. I cannot make normal plans like going to the mall or going back to school.
This is all typical of chronic Lyme Disease. The only known treatment now for me is intravenous antibiotics, and we have two options we are looking into: a clinic in Pennsylvania about 100 miles from our home and a doctor only 20 miles away who was recommended to us. I will need IV antibiotics twice a week for a year plus a strong regimen of vitamins to build up my immune system. There can be complications such as the IV lines clogging, and often when you start to fight the Lyme bacteria they fight back as they die off and actually make you feel worse. But I am ready to do anything to get my life back.
But insurance won't cover the costs, which will be in the range of $30,000. That's why I'm asking you to help fund me. Thank you so much for reading this -- we really appreciate your concern and prayers!
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