Before I was diagnosed with CRPS in November 2012, I was a spoiled, teenage girl whose life revolved around basketball. I played basketball nonstop. My parents invested thousands of dollars into private coaching, camps, travel teams, and gas expenses. Hours and hours were spent in the car traveling to practices, tournaments, and sitting in hot, cramped gyms waiting to hit the court. To do what I did everyday then, now, is simply unimaginable.
October 17th, 2012 was the last day I could truly, 100% concentrate on schoolwork. Today, my mind is always fighting the pain to get my work done and it is a constant battle to be productive when my symptoms are at their best, but not to wait too long or they will worsen again and therefore, whatever needed to be done, doesn't get done. For instance, I have to walk a half mile from my car to my college classes. Class starts at 9:00am and if you are late, 5 points is deducted from your final grade. I get up at 6:15 to get dressed, do my thing, eat, take medications, drive to campus while inevitably sitting in traffic, park the car, and walk to class. I usually arrive at class by 8:30 to allow my body to get itself together before 9:00 class. Even with accommodations from the disabilities office, I am still challenged to get through each and every one of my classes. This semester, I got lucky. I have a really good English professor who is very understanding and flexible. Then, I have the professor that docked me 5 points because it took me 35 minutes to walk from the car to classes in the middle of a flare. You win some and lose some. I graduated high school with a 4.4 GPA, but college has been a complete struggle. I just want to graduate with a degree at this point. Unfortunately, I know that my grades would be better if I could concentrate on the task at hand versus my pain, but it's my reality. And so it goes.
I have the added challenge of working my life around doctors appointments. More than once, I've considered just not scheduling anymore doctors appointments, but my "spoonie" friends have encouraged me to keep the faith and trust my team.
Nothing makes me more angry when someone tells me that I am so wrapped up in my health issues that I don't live life, because that is hardly true. The reality is, I do more than most people with chronic pain and it takes every ounce of my being to do what I do.
I can NEVER show how I'm feeling because the minute I let my guard down, I am told see a psychologist or a psychiatrist. If I didn't have CRPS and I had a visible condition that the medical community didn't dispute its existence, I can GUARANTEE you that I would not be treated the same way.
Before my CRPS, I could be super spontaneous and fun, but now, I have to be careful and plan out every activity to ensure that I won't get too much payback. Nevertheless, I still overdo it time and time again. Some things just never change.
Even though life as I knew it changed, I have learned that I'm a good writer, I've taken up blogging. I'm a ski patroller. I volunteer at the Children's Hospital where I am a patient once a week. I take Taekwondo classes 5 nights a week and I assist in classes. I have also had the opportunity to meet several amazing people that I would not have met if I didn't have CRPS. All though I usually don't admit it, I know that I have inspired many with my fighting spirit.
Now that I've been fighting and beating CRPS and its other unpleasant co-conditions, I've learned a thing or two about life. First of all, life's not fair. I don't know why CRPS struck me and not some criminal, but I've learned not to question it. Second of all, I'm lucky. I have a great team of doctors who work together to give me the best quality of life possible. Lastly, I'm lucky to have loving and supportive family and friends because not many people with chronic illnesses can say that.
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!