The last couple of days, I have had the opportunity to do some serious reflecting on my journey and everything that has gotten me to this point. The first thing I have to say is, I'm grateful. Grateful for the family that has stood beside me unconditionally. Loved me unconditionally. Grateful for the endless support of friends and the support of their friends, etc. I know that my story has traveled all over the world at this point via Facebook, The Mighty, my blog, and more. Grateful for the doctors that helped me get through each day and worked to give me the best quality of life possible and yes, I'm even grateful for the doctors that epically messed up, because without them, I wouldn't have as much meaning and purpose in my life. My entire senior thesis in communication is going to be on rare diseases and the process that patients go through to get a diagnosis. But it wouldn't have gotten to this point, without all the epic failures and mistakes. In some small way, each of those failures, nasty comments, and unrevealing tests, has helped to mold me into the person I am today. I'm stronger because of it all. Less naive to some of the world's problems. More willing to listen and help when I can. More open-minded. Less critical of others (usually, I'm still working on that!). Grateful to everyone that has gotten me to today, April 30, 2017. All the professors and teachers, all the other medical personnel, all the people that have prayed for me that I don't even know exist (and I know that they are out there!), all my academic advisors... Simply put, everyone. Everyone has a place in this battle I call my life.
I'm also angry. There is still a vaccine out there that is still being given to young people each and every day, and plunging perfectly healthy individuals into the battle for their lives. And for what? The efficacy of the HPV vaccine is in serious question and the risks (in my eyes) do not outweigh the benefits; not by a long shot.
The devices that have been used to keep me alive and thriving to this point, my cochlear implants, feeding tubes, my trusty port (near and dear to my heart literally), ventilators, countless IV pumps, and the list goes on, aren't available everywhere in this world and it would be naïve to think otherwise. Yet, that same vaccine that was shoved on me five years ago, is getting shoved on children in third world countries who could only dream of the medical care that we have available in the United States.
It has been a long road to get me to today, April 30th, 2017, exactly 4 years since my first brush with death and nearly 5 years since the vaccine that turned my young life on its head. Dreams were shattered that day and new ones constructed in its place. Hearts were broken and repaired in the same 30 seconds. Oxygen was deprived from the same body that yearned and fought to stay alive. Just barely, but alive.
I'm actually not even sure what this piece is supposed to be about at this point, but I had some important points to make and I'll publish this post the same way I've published so many others. Trusting that it will find its way into the hands of an individual that can do something with the struggle and make it something bigger.
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!