Finding My Voice
I’ve always been the type of person to find comfort in helping others. During high school and college I would travel to Honduras to live in an orphanage, spending time with the girls there and doing various volunteer projects around the compound. When I was diagnosed with MS I knew that the best way for me to process and accept it, was going to be to help others.
The second therapy I was put on was Plegridy. I was actually the first person in the country to be approved for this drug. It was a brand new drug and I started taking it in November 2014 and really liked it. Ok, perhaps “like” isn’t the correct word; who likes injecting themselves with a needle? I didn’t mind Plegridy. After all I only had to take it once every two weeks, which was better than the weekly injection of Avonex I was used to. It also didn’t leave as big of bruises. I was a young adult trying to work a few jobs and maintain a social life. The less I had to think about medicine, the better.
This is why when I was offered to be on the Plegridy campaign I was pumped! I was flown up to Boston in March 2015, picked up in a Tahoe, driven to my hotel room at the Westin, and met my fellow campaigners in the lobby the next morning. There were five of us total and we spent two full days in training and speech coaching classes. I was the youngest one there, and I thought this was my golden ticket to helping other young adults, especially those newly diagnosed.
One night we all went out to dinner with all of the Plegridy marketing and social media directors, and talked about how awesome of a group this was and made plans to participate in several upcoming races and fundraisers together as the PLEGRIDY TEAM, all over the country. We bonded over relationships, family, and our journeys, and for the first time since my diagnosis I felt like these people really got me. I came home and told my parents that it was the best experience I’ve ever had and reassured them that I was going to finally be able to reach young adults who are going through the same thing as me.
That’s why when I got my MRI a few weeks after I got home, and my results came back with additional lesions, I was heartbroken. I was told that we had to switch my medicine and realized I was no longer going to be part of this Plegridy family that I had been so excited to be a part of. Being told a therapy isn’t working for you is hard! I had gone through over a year of sticking myself with two different injections (Avonex and Plegridy), dealing with the bruises, chills, and crippling migraines, to be told they weren’t working. Not only did I have to accept this, I also had to accept I was losing my place on the Plegridy campaign.
I am very bad at expressing my feelings when it comes to talking. I always have been. I don’t like anyone feeling bad for me or giving me sympathy, which is why I guess I would rather help others than seek help. Writing, however, is something that I have always loved. I find true comfort in words and enjoy diving into them to figure out their deeper meaning. In college, I was the classmate that would choose writing a 100 page paper over a ten minute presentation. Growing up, whenever I wanted to apologize to my parents for something, or explain my feelings in full detail to a boyfriend, I always did it in letter form.
Fast forward to the summer of 2015. I discover Stephanie Buxhoeveden’s (who is also a blogger for MS.net) TedTalk and was truly inspired. I emailed her explaining my disappointing Plegridy experience, told her I really wanted to figure out how to reach the MS community, and how motivating I found her blog and TedTalk. She emailed me back ten minutes later and after several emails, realized that we were going to become fast friends. Her blog and outlook on how she was dealing with her diagnosis, inspired me to start writing. I could write about how I was feeling while trying to help others going through the same thing. I then realized that I could start a blog! For some reason this thought hadn’t even crossed my mind. I read MS blogs all of the time, but it never occurred to me, that I could be a blogger. At least that was the case until Stephanie motivated me to do so.
So, here we are. I hope you find my journey inspiring and maybe even a bit entertaining. I mean, I did have to wear an eyepatch for a few months and while working at a seafood restaurant, so stay tuned!
“Remember that sometimes not getting what you want is a wonderful stroke of luck.”
How do you feel before getting an MRI done?