Since, it is now almost 6 years later & I “all of a sudden” decided to tell the world that I have MS I am finding myself often being asked: “Why now?” Why did I not originally speak of it & since I didn’t why did I decide to now?
Well, I can give a remarkable & valid brief version, but I thought my blog would be a perfect place to share the longer version.
You will come with me for the past 6 years since the day I was diagnosed to here & now & perhaps see for yourself why I have internally struggled so much with both the acceptance & sharing of my diagnosis even after 6 years of knowing I had this disease…
Let’s start from day 1….
April 29, 2008-September, 2009
After undergoing multiple diagnostic tests that unfortunately involved some unforeseen complications, on April 29, 2008, I was told I had multiple sclerosis at the age of 22.
I remember & look at this day as the first day of the darkest time of my life. My MS diagnosis was the first event that led into a downward spiral of events that eventually led to my almost complete & utter downfall. I fell face first on April 29, 2008, and if you would have asked me on that day, I would have told you I thought I had hit rock bottom. The truth is, I hadn’t even come close. For the next 2 ½ years I became so mentally broken down that my MS became the least of my concerns.
When I was initially diagnosed, my family & I were not shy about sharing the news to those that we were close to. All my brothers, aunts & uncles, grandparents, cousins, & my closest friends were informed of my new label. Immediately, my closest family members & friends came together & we participated in the 2008 Wisconsin MS 150 & annually every year then after to raise money for the MS Society. After the initial telling of my story; I stopped talking about it. I won’t say I pretended I didn’t have it, but I definitely did not dwell on the fact that I had it. I only shared the information on a “need to know” basis. I continued to raise money for the MS Society, however I kept my personal diagnosis concealed from any “newcomers” in my life. When we would raise funds, we would always ask the same group of people for donations. The ones that already knew I had the disease that we were riding & raising funds for. Period. That is where it ended…with a select group of people that annually shared in our fight.
As the year went on, I was prescribed a medication called Copaxone (a daily injection) to treat & help slow the progress of the MS. Throughout the next year, only those close to me continued to know of my diagnosis & the bitter complications I was having with the disease. During this time, I became very concerned of what my prognosis would be. My biggest fear was losing those I loved due to the fact that I may eventually become unable to do the things I love & thus becoming a completely different person. I almost dropped out of the master’s program due to my overwhelming fears & personal complications with only a few months remaining in obtaining my degree. Fortunately, I had some exceptional professors & friends that were willing to work with me & I successfully completed the program on time. Unfortunately, in that same month (August, 2009) my world fell apart and I ended up losing my health insurance & as a result, could no longer afford the medication.
Now, 24 years old, without a job, living back at home with my parents, & unable to afford my medication I found myself in such an unwanted position that frankly, I was so broken down that I didn’t even care. I was ready to let the MS consume me & almost prayed it would.
Please come back for Part 2: October, 2009-January, 2011