A little background before I dive into my diagnosis:
I was raised in Fredericksburg, Virginia, a town located half way between DC and Richmond. I grew up in a very loving family with my mom, a nurse, my father, a neurologist, and my older sister, Lauren. I went to a small private school, Fredericksburg Academy and graduated in 2008. I then attended Sweet Briar College which is an all women's college in the foothills of the Blue Ridge Mountains. Sweet Briar has been rated the most beautiful campus multiple times and anyone who has ever stepped onto campus would agree. I was lucky enough to meet some of my best friends on my freshman dorm hall, many who I still keep in touch with today. In 2012 I graduated with degrees in Sociology and Business Management and moved back to Fredericksburg.
Two things you should know about me, I am absolutely obsessed with photography and the outdoors. I try to be outside as much as I possibly can and I try to take photos of everything. So please forgive the random outdoor photographs that you may find throughout my blog.
My diagnosis was different than most. It all started August of 2013 while I was on vacation with my family at Lake Lure. I remember complaining to my cousins that the mountains were double, and our dock and boat were double, etc. but being brought up in a medical family, and the lake house having 2 doctors and 2 nurses inside, I had learned not to complain about medical issues because it always ended in a trip to the doctor or pharmacy. So I convinced myself I was dehydrated and sea sick for the week.
The night we got home I was driving to my friend’s house and quickly realized that I couldn’t tell which stop light was mine. I called my dad, the neurologist, who came and picked me up. He took me home and preformed some vision tests in the living room and he knew something was wrong. I will never forget the look in his eyes when he told me that I needed to go to his office the next day. He has always been one of the most composed gentleman I know, and I can’t imagine how a father keeps that calm composure when he realizes that his 23 year old daughter is most likely suffering from optic neuritis, the most common first symptom of MS. I went to sleep and the next morning was woken up by my mom with what seemed like an itinerary of endless doctor appointments, blood tests, and an MRI. My dad came home that night and sat me down in the living room with my MRI results and showed me the 9 plaques on my brain. I was so confused, suddenly the purple post it notes that said “Avonex” that I had been writing on for 20 years all made a lot more sense. While in high school I used to use these little pieces of paper thinking nothing of it and suddenly that all changed very quickly.
I had always been the independent, care free, fun, advice giver in my friend group. Traveling to Honduras during the summers to work in an orphanage, being the event planner for all of our gatherings, and all I could think about was what was going to come from all of this and how much my life was about to change. At the time I was 23 years old, had just moved to Richmond, VA to start a new job and moved into an apartment with my best friend. The job was odd hours, lots of late nights, and I knew moving back home was my best option. So back home I went, back to the seafood restaurant I managed after college (good thing it was a seafood place since I had to wear an eyepatch to correct my double vision.) At first I didn’t tell anyone besides my best friends what was going on, but slowly people started asking why I was dressing like a pirate and not socializing as much. I made the decision that keeping this disease a secret wasn’t going to make it go away or make it any better. That was until my friends started sending me youtube clips of bed ridden patients with monkeys feeding them because they couldn’t feed themselves and asking me if I was heading that way. I was overwhelmed from my medical parents who were bombarding me every 5 minutes asking how I was feeling and all of my friends thinking I was on my deathbed. I had to find the perfect medium of independence which I was used to and the support that I actually needed (though it was hard for me to admit and accept.)
I was embarrassed to tell people at first. Who do I tell? My friends? Coworkers? Boys I was dating? Younger cousins who looked up to me? I was 23 years old and as all my friends were moving forward with their lives I felt like mine was just going in reverse. I was so sick of logging onto facebook and seeing so and so getting engaged and so and so getting into grad school when all I could think about was what therapy I was going to start and what doctor appointment I had tomorrow. I decided that I wasn’t going to let MS define me and that I could tell who I wanted, what I wanted, when I wanted.
MS isn’t who I am, it’s what I have.