People always ask how my mom how I am doing. Her response? She is wonderful when she is not admitted to Children’s Hospital. It is the truth. When I am not in the hospital, it is easy to forget that I even have chronic illnesses. I use this blog to share an insight into my life, with the occasional vent, poem, or artwork of my own creation. I am not the best author, so if you can get passed the fact that my posts may not always flow like some of the top authors. You may learn something from my blog. But first, I’d like to make one thing as clear as possible. I am always sick. I am always in pain. I am always dealing with some dysfunctional part of my body. Each day is filled with challenges. Let’s take a look at the positives. What I do despite living in a dysfunctional body where more things don’t work rather function normally.
When I am not bedridden, wheelchair bound, and confined to the quarters I know as my hospital room, I am a vibrant, outgoing 19 year old. I attend college where I am studying Emergency Medicine. Academics are always my primary concern, but in my free time, I serve on the executive board of two organizations on campus. Like many young adults my age, my favorite thing to do when relaxing is binge-watching the latest crime show drama on Netflix. I also love to spend time with friends and enjoy their company.
I also like to do crazy physical endeavors. Anything that gets me out in nature, whether that be fishing, hunting, hiking, or biking, is a ton of fun. I help out with taekwondo classes for the younger kids and spend hours training in taekwondo to earn my black belt next month. It blows my mind to think that in just about one month, everything I have worked so hard for will finally be fulfilled when that black belt is tied around my waist. I seriously can’t wait!
On winter weekends and days that I don’t have classes are filled with hours of skiing, helping injured skiers and boarder, and training for the next race. The mountains of the Laurel Highlands are so incredibly beautiful at this time of year with the fall foliage and of course, it is a spectacular winter wonderland in the winter months.
Once a week, I set aside 4 hours to volunteer at the local Children’s Hospital that keeps me going. It is my little way of giving back to the hospital that means so much to me. I love volunteering in the physical therapy and occupational therapy departments, because I love kids improve their physical capabilities. There is something satisfying about ensuring that the gyms and equipment are completely disinfected, so that transplant patient or cancer warrior doesn’t have to worry about contracting an infection while building up their strength.
I keep myself very busy when I’m not in the hospital. Just recently, I got my Emergency Vehicle Operators certification that allows me drive ambulances. Scary thought, huh? Don’t worry, I’m a good driver! In addition, after over a year and half, I was recently awarded the Presidential Champions Platinum Award. For a year and a half, I recorded each and every one of my workouts. The calories from each of those workouts were tracked and when I got to 1 million calories burned, I achieved my goal. I have also done some other pretty awesome things, like help run a Mass Casualty Incident Drill and get my CPR Instructor certification.
I have accomplished all this stuff and so much more, which helps me to keep things in perspective, when I am having a really horrible day or when I am in a pain crisis and nothing helps. I may have RSD/CRPS, but RSD/CRPS will never have me because I never ever give up!
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!