As a 19 year old, what did you worry about? What sorority is throwing the next party? Who was dating your crush? What's for dinner? Who's clearing the full sink in your apartment? What did you get on that calculus final?
These are all valid and typical concerns of a 19 year old from my perspective. I wish that college, work, a social life, and whatever else I chose to include in my life was all I needed to worry about. Instead, I have been given a different hand. A hand far more challenging than I ever imagined and a hand I wouldn't wish on my very worst enemy.
For almost 5 years now, I have been fighting a battle unlike any other. It is a battle I cannot fight alone. I tried, but I do not possess the skills necessary to fight and win the war alone. In the last four years, I have had countless hospitalizations, surgeries, and procedures to control my sometimes uncontrollable body.
My whole life, the only thing I had to be concerned about was my deafness and managing my hearing aids, which became cochlear implants in 2010. That is until I developed Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS) in my hand in 2012. With that diagnosis came 28 weeklong admissions to date, countless prescription medications, and even more diagnoses. Anyone with a chronic illness will tell you it is nearly impossible to only have one chronic illness.
Sadly, I have found that to be true as the RSD/CRPS has ravaged just about every organ system in my body. Up until now, I had always been protected by my parents' insurance plan. Now that my problems have become so complex, my doctors are demanding that I see a particular specialist not covered by my insurance to diagnose an extremely rare condition known as stiff person syndrome (SPS). They refuse to treat me until I see this specialist. To see this specialist, I have to travel 8 hours away, stay in a hotel for up to a week, and have all the testing that this new specialist could potentially want done, in addition to the cost of two people being away for a week. All without insurance coverage.
At 19, I've had a job where I woke up at 5:30 in the morning, worked until 7:30 at night, often not getting to bed until 10pm while taking summer classes online. To most it would sound like torture, but for me, I would do anything to have that job as a waterpark lifeguard again even though it was barely a minimum wage job.
This summer, I find my family faced with a 2 hospital bills of an unknown amount of money. I can't work or function optimally for school until this condition is diagnosed and treated, which makes matters even worse. I can't make money to help my family help me. I am wheelchair bound and unable to drive due to high doses of medications.
I don't want to have to worry about my family's long term financial security because of my poor health and expensive medical needs. We should be worrying about normal things like college and summer vacations. As this appointment with the specialist approaches, I feel very cornered. Without this specialist's diagnosis, I don't get treated by the doctors in my insurance plan. Without treatment, I am stuck. I feel like every day I have to worry about something related to my health. I always feel the need to sacrifice something to reduce the financial strain. Everyone tells me not to worry about the money, but it doesn't grow on trees. I don't want to put myself or my parents in a bad financial position.
All in all, a 19 year old, hardly a kid, but barely an adult, should not have to worry about the medical bills on top of their poor health. No one should actually, but I kind of wish I could enjoy the young adult "spend what you make" lifestyle where occasionally mom and dad throw in a few extra bucks. Unlike many my age, I am not an entitled individual and I work hard for what I have. I can't wait for the day that I have more than $94 in my bank account and I can say that I have worked hard to earn it.
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!