My name is Meghan Bayer and I might as well be the next feature on the TV show "Mystery Diagnosis". Actually, I have a better idea. Paging Dr. House!
For the last four years of my life, I have lived the life of a medically complex teenager. I live near Pittsburgh, PA, a city known for its healthcare systems and technological innovation. This begs the question of "If this city is so medically and technologically advanced, then why don't I have a diagnosis?" I wonder that myself every day.
In the last 6 months, the treatment plan that has been working so well for the last three and a half years suddenly stopped working. It wasn't a pleasant treatment and it took 5-7 days, sometimes longer inpatient, but it worked. In December 2015, it failed and I was left with the question, well now what? I was started on higher doses muscle relaxers, which take the edge off the daily struggle and allow me to push myself in a manual wheelchair. It barely takes the edge off for me, yet the medications at the dosages I require would sedate full grown men twice my size. Me? I'm a fully functional college student (minus the ability to walk) earning good grades and (attempting to do) martial arts from my wheelchair.
Without the ability to walk due to severely contracted muscles in my lower legs, I can't drive myself anymore. This has resulted in a loss of independence I can hardly stand. Most of the fights I have with my parents related to my health in some way (driving me to martial arts, disagreements over how I should be treated, and my overwhelming desire for hand controls so I can have my independence back, etc.). I've honestly probably fought with my parents more in the last 166 days than I have in my whole life. I've always been the good child in the family. Asking for help makes me feel like that has changed. My younger brother zooms off to school, lacrosse practice, and hangs out with friends whenever he wants. My dad has the immense responsibility of working so we can afford to live and bears the burden of having a sick teenager. My mom works a casual position in the ER, but rarely has to work a shift. Most of the time, she is cleaning, running errands, or caring for our five dogs. Yes, you heard me right. 5. Then, she too has to shoulder the burden of a sick daughter.
While we desperately search for a diagnosis, I helplessly watch the opportunities, like study abroad, pass by. If that's not depressing, I don't know what is. Okay, that's a little dramatic, but my point is I shouldn't have to be a prisoner in my own home and have to ask someone to take me to taekwondo, doctors appointments, or to grab me some dinner somewhere when food in the house runs out and we need to do the grocery shopping. Grocery shopping used to be my job and probably one of my bigger contributions to the household.
If I have to be a 19 year old fighting with my parents about something, can't it be about curfew, parties, or something more typical.
So now I find mom and myself driving 24 hours round trip to see this specialist at Mayo Clinic. We have to start our drive on May 8th (Mother's Day AND her birthday) to be there in time for the appointment on May 10th. Flying is not an option for several reasons, mostly because I require so much equipment from a wheelchair to a shower chair. Not exactly things that can be stuffed in a suitcase.
All I want is to walk again. Every day, my prayer is "Dear God, please let me walk and be independent again" and I know the prayers of my friends and family are similar.
All I want is someone to drop me a rope pull me from the land of undiagnosed. It's really lonely down here and the medical system combined with insurance are frustrating me beyond belief.
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!