When
people ask for my story I’m never really sure where to start. Do I
start with when I first noticed the pain, when I was diagnosed or where I
am at now? For now I will start with when it all began. I had just
turned 14 years old, and I was soon to be a freshman in high school.
I
was so excited, it was the next step in my life, and I could finally do a
sport that I was good at, golf. Another new thing to me was marching
band. Practices for both started in early August. The more active I was
the more I was noticing pain. It all started in my wrists and my knees.
My wrists would pop, snap, and crack every time I would pull the club
back, it got so bad to the point that I couldn’t even hold the club up
very well. My coach sent me to our HS athletic trainer to have her look
at them. When I talked to her she said that yes they were swollen, but
it was probably just tendonitis. She wrapped them up for me and I was on
my way. As for my knee marching band was starting to get the best of
me, both knees hurt, only one popped. After awhile my parents gave in
and sent me to an orthopedic surgeon in town. Worst decision ever made.
When we went he diagnosed me with an extra band of tissue in my right
knee, after so long though with no results we transferred to DeVos
Children’s Hospital. There they took care of my knee and diagnosed me
with a torn meniscus which 3 surgeries later would be fixed. Even though
there was nothing visibly wrong with my left knee he was convinced the
pain was coming from somewhere. He did some lab tests and got my
inflammatory count back, mine was 7x’s what the normal persons is. I
didn’t let that stop me though, I continued to do marching band, golf
and even added dance team. So at age 15 I was sent to some doctor called
a Rheumatologist, at the time I had no idea who it was nor why I was
going there. My first visit the doctor looked at me and said I’m not too
worried about your knee right now I’m worried about your wrists and
ankles. Then it all made sense the pain I was putting up with as a
freshman, and it just continued. From there I was sent in for several
tests and started on some medications, along with scheduling several
MRI’s. I had an amazing doctor who was determined to find out what I had
and what he could do to help me. At age 16 I decided to do swimming
instead of golf, along with continuing marching band, and dance team.
Swimming was not such a smart decision, the repetitive motion was
killer, so I switched to diving. Diving I found a true passion for I
loved it so much. The only issue is due to everything I could never get
as high as the other divers or stand as much as they could. I still
pressed on though. When it came to marching band everyone gave me so
much crap about my invisible disease, I was a faker in their eyes
because you couldn’t physically see the hurt, after that I was done. I
couldn’t handle going home crying every night because of the pain mixed
with the things that people would say to me. The rest of the year pretty
much went the same way the whole time I’m being put on a mix of
medications, none of them that ever did anything for me. Going into my
senior year at age 17 things took a huge turn for the worse. Everything
hurt, my rib cage which made it hard to breathe, my back which made it
hard to sit in a chair, my ankles which made it hard to jump for diving,
my knees, everything and anything that could hurt did. Then I received
my diagnosis. Ankylosing spondylitis. It was hard to hear for so long I
feared the unknown, but now I was scared of the known and what the
future had in store for me. After that things continued to decline, I
was put on meds that made me sick. The pain grew to the point I had to
stop the activities that I love. It was all over terrible. It finally
hit a plateau going into my freshmen year of college. I stayed home and
went to a community college. And then here I am now.
I’m going to be a
sophomore in college, I’m going to Grand Canyon University in Phoenix,
AZ. The reason I decided on there was because the constant dry heat. My
AS has not been doing too great, recently the doctor told me, that I may
not ever reach remission. I’m on sulfasalazine, relafen, remicade, and
temporarily on prednisione. It’s been a rough journey, I’m right now a
camp counselor at a YMCA camp, and I love it, but I would be lying if I
said that it was easy. The fact that I have AS will always make life a
little more complicated, sometimes I have to say no to things due to my
limits. Going through it at such a young age I think made it harder.
High school is hard enough already, but dealing with an invisible
disease that people don’t understand makes it even harder. One time I
recall my legs got so painful, I just couldn’t even walk on my own
anymore and so I used crutches. I became known as the class faker.
IAAM's JA Awareness MOVEMENT....
What a great pleasure to have Alexa as the second JA Guest Blogger on both of my blogs. Thank you for sharing your personal story. If you have any questions for Alexa, please ask the questions through me and I will send them to her. If you have a JA Personal Story you would like to share, please email your story to Dana at danalm_iaam@yahoo.com with your title, blog name and URL, your name as you would like it published on my two blogs and on IAAM's Facebook Public Pages. If you do not have a blog, that is OK, you can still share your story, simply send me your story in a Word Document with your picture attached and I will put it into my blog for you. It is that simple. ;-)
Whether you have JA, are a parent of someone with JA, or care for someone with JA, I am looking for Guest Bloggers!!!! It is JA Awareness Month, and IAAM is launching its Juvenile Arthritis Awareness Movement! We'll launch this initiative on Monday July 9th so check back! Until then, a sneak preview: JA isn't the same as having Degenerative Arthritis and YOU will have the opportunity to tell the world why! Stay tuned, it's about to get goooood ;). Watch out because IAAM's new JA Campaign is gonna blow JA Awareness out of the water! In true IAAM style it will be a little out-of-the-box and will allow YOU to shine!
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