For those of you new to my journey, after months of anticipation, my mom and I have made the 2 1/2 hour flight from Baltimore/Washington International Airport to Minneapolis/St. Paul to see the world's expert in my rare disease; stiff person syndrome. This specialist is at the Mayo Clinic in Rochester, MN, about an hour and 20 minutes from the airport and about 20 minutes from our (wonderful!) hotel. (Did I mention the price per night is pretty awesome?) Very important on a potentially expensive medical trip like this!
Anyway, after arriving at our hotel, I made a beeline for the bed. I was so tired after several days of not sleeping well. Now, I slept like a rock for a solid 4-5 hours. So I guess the real question is: Will I be able to sleep tonight? Keep in mind, I'm an hour behind you folks on the East Coast!
In the meantime, my mom ran to the Super Target down the road to pick up water, a phone charger, and a few other things. On the way back, she stopped at the Texas Roadhouse to pick up some ribs and fries for me (Yum!). The only thing left on my list of things to do tonight is to take a shower and my night medications.
But before I do that, I want to share a story about a special young man who happened to be sitting next to me on the flight. His name is Mo and he was born with a rare genetic condition called Nemaline Myopathy, a form of muscular dystrophy (MD) that affects 1 in 50000. Like most forms of MD, it causes the weakening of his skeletal muscles and he needs assistance with tasks like standing up and he cannot stand or walk for long periods or distances. He is a senior at Minnesota State University and we talked the whole flight about the struggles of growing up with a chronic condition and having to adjust life goals to what your body is capable of doing.
Like me, he has had to change his major and career focus to adapt to his MD. At one point, he wanted to be a civil engineer, but soon realized that the strains on his body would be too much. It was a very enlightening conversation with a well spoken young man who just "gets it".
I think that's enough from me for tonight. Please keep me in your prayers as I see Dr. Andrew McKeon at the Mayo Clinic at 12:30 CST/ 1:30 EST. Check back tomorrow evening for an update on how things go! I'll be posting updates throughout the whole trip to keep everyone back home in the loop! Love to all back home and thank you for your continued prayers. They are keeping my mom and I going!
Meg Bayer, signing off from Rochester, Minnesota! Good night!
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!