I was what you might describe as a sheltered child growing up. I lived in a small town most of my life, went to private school, and made most of my friends outside of school through soccer and Girl Scouts. This sheltered lifestyle was a good fit for me growing up as a deaf child.
As I got older and earned my parents' trust, I earned more privileges. With more privileges comes more responsibility. I've never been afraid of hard work, so I embraced the opportunity to be more mature. When I was 16, I started developing a lot of medical issues and the diagnosis list kept getting longer and longer.
Some are more minor and don't affect me often, but many are debilitating and cause me to have symptoms everyday. At my sickest, I was forced to live at home and commute to my college for classes. I wasn't allowed to drive at the time due to the high doses of my medications. My parents and brother did almost everything for me. Washed my clothes, changed the sheets on my bed, drove my everywhere, fixed my meals, reminded me to take my medications, helped me shower and get dressed; I was previously perfectly independent. It killed me a little more inside everyday to have to have other people do so much for me.
Part of the reason I had to stay at home and commute was because the university didn't have any available wheelchair accessible housing available at the time.
For the 2016-2017 school year, I made the huge decision to move on campus in a single apartment that was fully wheelchair accessible. I would have to prepare my food, remember to take my medications, do my homework, wash my own dishes and clothes and more. It seemed completely overwhelming at first, but it has been one of the best things I've ever done.
My parents were forced to let go some more. I would be forced to deal with all my medical problems as they came. Mom wouldn't be at school to hold my hair while I vomited. At times I wondered if I was completely crazy to be living alone, let alone attending college full time, while having a job. I finished my Fall semester with a 4.0 and Dean's List honors and I'm just about halfway through my 2nd semester of the academic year. So far this year, I've only been admitted once and sent to the ER three times. That sounds like a lot in 6 months, but that is really good for me.
With the help of specialized fire alarm, vibrating alarm clock, good medications, and supportive family and friends, I have been able to successfully live on my own and thrive!
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!