Weird was the word I used to describe many feelings in the last four years. I simply could not think of a better word to use. Sometimes my vocabulary included; tingly, sensitive, itchy, burning, cold, achy, painful, tired, and fatigued. Of course, over the last few years I have come up with my own words describing how I am feeling. Some include; ookey, blah, pooky, icky, "don't touch me!" and "I'm too tired to do anything." My mom and I have started our own language. She knows what I mean when I say I am feelin ookey vs pooky, or when I am feeling blah. It's actually kind of funny!
In 8th grade (2010-2011) I missed nearly the entire year. As you can tell by today's date, my symptoms started at the beginning of the school year. September 9th, 2010. Eighth grade included two hospital stays, weekly occupational and physical therapy, countless doctor appointments, visits to the Mayo Clinic, 4 MRIs, etc. It also included visits from friends, encouraging, supportive, accepting, and forgiving teachers, earning the "Youth Volunteer of the Year" award with my siblings, remaining the Student Council President, taking a trip to Seattle with my parents, and learning how to live my life to the fullest.
9th grade (2011-2012) was an eventful year in many ways.
August: Welcomed Amanda to our family from Denmark
September: Started my freshman year of high school at AFSA High School taking 3/5 classes
October: Spent a lot of time at home; I was too tired, and felt too "blah."
November: I had an MRI on November 17th. On November 18th, 2011, I was diagnosed with Multiple Sclerosis. However, I was selling my sock monkeys at a craft fair on November 18th and 19th, which my parents wanted me to enjoy. I did not learn about my diagnosis until the evening of November 19th.
December: Realizing that I have a potentially life long disease. I went to the doctor to learn about the therapy options available. I had to make the hard decision of choosing which medication I wanted to be on. I had to choose between the side affects, how often it had to be injected, and what the doctor though would be best for me.
January: I anxiously waited, and dreaded the day my medicaiton would arrive. It arrived around the middle of the month, and thus began my Copaxone journey. Matt (or MS nurse) walked me through setting up the "AutoJet" and how to prepare my injection. He showed me where to inject myself, as I cried. I was angry. I didn't want to cooperate. I didn't want to move. I did NOT want to have to give myself daily injections. My dad gave me my first injection. As he sat with the tip of the needle pressed against my skin, his eyes filled with tears. As he gave me my injection, he whispered "I'm so sorry. We didn't find the cure fast enough. I love you."
February: We welcomed Philippe to our family from France! Yes, we now had 7 people in our house. We were (are) kind of crazy.
March: Jenna from the MS Society emailed me asking if I wanted to be the Bike MS 150 ambassador. I was honored she thought of me, but terrified at the same time. I had not told any of my friends at school about my diagnosis. I was afraid I would be treated as "the sick kid." Being the Bike MS ambassador, would include creating a video, talking to the press, and speaking at the MS 150 (on stage, infront of a few hundred people). I accepted to invitation, thus began my passion for public speaking.
April: The video was finished. My school holds a monthly meeting where announcements are made, games are played, etc. I thought about making an announcement about the MS Walk. I though about showing the video. But showing the video, meant the WHOLE school would know I have MS. I was afraid. I decided last minute to show the video. The video played, and I confidently walked on stage. I told them who I was, and what I go through every day. I explained my fear of being treated differently. I ended my announcement with the statement "I am not asking for your pity, I am just asking for your support." I walked back to my seat, with a standing ovation leading me. How cool! At the end of the school meeting, I had students coming up to me just to shake my hand, tell me about their own illness, or hand me money as a donation. This was one of the most exhilarating experiences of my freshman year. (click here to watch the video mentioned above: www.youtube.com/watch?v=eIvrGxm7d9Y)
May: 30 people joined me on the MS Walk. Over the course of the month, I spoke on Fox 9 news, WCCO (http://minnesota.cbslocal.com/2012/05/03/walking-for-multiple-sclerosis-side-by-side/), as well as a radio station in Duluth. I was becoming more and more empowered to share my story each time. Something inside of me lit up each time, and my diagnosis became easier and easier.
June: Sarina (our first exchange student from Germany), surprised us a week before Jessica's (my sister) graduation! Jessica graduated, we had an AWESOME party, and enjoyed spending time with friends and family. Jessica also left for Beijing a few days after graduating for an 8 week internship! The following weekend, was the MS 150. I was able to share my story with many bikers and volunteers, and learn about their stories as well. It is touching to hear how similar yet different everyone's story is.
July: My parents and I went to Europe to visit all of our exchange students! What a fun month!
August: Jessica returned home from Beijing, and we also welcomed Saskia to our family.
10th Grade (2012-2013) definitely had its ups and downs. Some high lights and low lights include: speaking at the Minnesota Twins Diamond Awards, receiving the Youth Volunteer of the year award from the MS Society, missing nearly an entire trimester of school, traveling to the Grand Canyon over winter break, and enjoying a visit from Saskia's family in April. In March of 2013 I was able to meet 4 other teenagers around my age living with MS. My dad and I traveled to Sioux Falls for a weekend to meet them. It was nice being able to share stories and experiences with one another. In addition, in March, the oral drug, "Tecfidera" was approved by the FDA! I was able to start on Tecfidera in April; we celebrated with a cake! No more injections!
11th Grade (2013-2014) was a good year. I was asked on my first date, and had my first boyfriend. I missed only a few weeks of school during the entire school year. This was also my first year as an "only child" at home! With Jessica off to her sophomore year of college, Peter living in a group home, and no exchange students in the house, it felt kind of lonely!
12th Grade (2014-2015) Has already been off to an eventful start. More on that later.
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