2015, All things considered you were very good to me. Sure, I spent many weeks in the hospital, but for every admission to the hospital, I can think of hundreds of wonderful opportunities and memories. I've learned a lot this year about myself, about others, about faith, being a leader, and about my purpose in life. I've accomplished a lot, failed many times, but most importantly I was human and learned from my mistakes. Yes, I'm not your typical young adult and people tend to expect me of me than the average individual.
All winter, I spent countless hours volunteering with the Seven Springs Ski Patrol. I learned how to perform hillside rescues, provide patient care on the ski slopes, and work with some very critically injured trauma patients. I had a chance to touch a few lives in a unique way and that was one of the best parts of working patrol. The patrollers that I worked with were excellent mentors and I learned a ton from them in the field. Some of them have been patrolling for 20+ years! It was an experience that improved my skiing skills tremendously and there was no greater feeling than clicking out of your skis after a 12 shift knowing that you did some good.
Unfortunately, my ski time was limited in January. Towards the end of the month, I got hit from behind while out skiing around and another skier from behind. Thankfully the man that hit me was fine (Actually, he thought it was funny!), but I was in too much pain to laugh. I hobble-skied back to base. I was done for the day. I took a few days to rest it, but when it wasn’t feeling any better, I decided to get back on the mountain. I didn’t have time for a stupid heel bruise. As a result of this injury, my CRPS and dystonia flared terribly and I ended up having to be admitted to Children’s Hospital. Although the treatment was successful, let’s just say that this wasn’t one of my finest admissions.
My admission spanned the end of January into the beginning of February. After I got out of the hospital, I continued to ski four to five days a week whenever I was not in my college classes or doing homework. I actually managed to qualify for sixth consecutive Nature Valley NASTAR National Championship, despite my heel injury significantly slowing me down. Many nights when I returned from the mountain, I would be completely exhausted, so I would take a nice, warm shower and grab a quick, healthy snack. Usually a handful of nuts. Well, one particular night, I grabbed a handful of pistachios and went to pick up my brother from a friend’s house. By the time I got home, I was covered in itchy hives, my chest was tight, swollen and I was wheezing. I developed a tree nut allergy. If I run into them now, I usually need an epi-pen or two to stop the reaction along with some Benadryl. I also tested for my brown belt decided in taekwondo. Eight months to black belt!
March consisted of more school work and skiing in my free time. I finally reached my breaking point with my heel. I could no longer stand the pain of shoving my swollen foot and heel into the ski boot, so I ended my season a few weeks early. I also continued my taekwondo classes and helping out with the younger students, which is one of my favorite things to do.
April kept me on my toes. Taekwondo became my number one priority outside of school and homework. All of this came to a screeching halt when I found out that I needed surgery to close a non-healing pressure ulcer on my heel that had been there for about a year and a half. The concern was that it could become cancerous, so I opted for a surgical closure. It was a smooth surgery, but it forced me off the mats and into a wheelchair for a month. Anyone who knows me well enough knows that I have a hard time sitting on my bottom and not being able to participate in any kind of physical activity. However, I did manage to get my red belt recommended the night before I went into surgery, which allowed me to stay on track with my goals. The best part of April was the successful conclusion of my freshman at the University of Pittsburgh. I managed to do it despite everything and I earned good grades in my classes. I was pretty proud of that, because it was not an easy year academically.
In May, barely a week and a half after I finished my semester, I slightly rolled my ankle and ended up in a gigantic CRPS and dystonia flare. That landed me in Children’s Hospital for another round of ketamine and tunneled epidural catheters infused with lidocaine. It was no fun of course, but the pediatric pain management team fixed me right up and after a week, I was on my way and back to my “normal” life.
I also flew down to Charlotte, North Carolina to see my cousin for five days. I was amazed that my parents let me fly down to see her alone. I know that was a big step for them to take. I had a wonderful time with her going to Carowinds, an amusement park, seeing Tomorrowland at the theatres, visiting ESPN’s SEC studios and getting a behind the scenes tour, and just generally chilling out with my favorite cousin.
June was particularly eventful. I got a job at a waterpark two hours away and I started out as a slide operator until I could take the lifeguarding class. I actually managed to complete my lifeguard test with flying colors. I had to tread water for two minutes using only my legs. I had to surface dive and retrieve a ten pound brick off the bottom of the wavepool and I had to swim 200 meters non-stop. That was the part I was worried about, but it turned out to be really easy. I also had to take a course on first aid and CPR, read a textbook, and take a written exam on which I got a 96%. While working, I was also taking two online courses for 6 credits at the Community College of Allegheny County. It was challenging to balance school and working 40+ hours a week. I also tested for and received my red belt decided!
I developed this strange pain in my left ankle that I just couldn’t explain. At times, it would be excruciating and walking would be an extreme challenge. I thought maybe it was just a minor sprain and I tried not to think about it. I figured it would be best to move on with my life.
Right after I finished guard training, my family, some friends, and I drove down to the Outer Banks for a week of relaxation. We rented this huge house called the Magic Conch. It had a private pool, hot tub, outdoor shower, and a ton of porches. The hammock on the porch was a family favorite and we spent so much time just chilling on the beach. We went sea fishing, explored lighthouses, and played mini golf to name a few things. The guys even went out on some jet skis, while the girls took a trip to see some dolphins. We were there around the time of all the violent shark attacks, so we had to be extra vigilant, as we even saw some sharks close to the shore while we were swimming. I don’t think I have ever swam/ran so fast in my life. Overall, it was a wonderfully relaxing week with the family and our small group of friends. (Even if I did have to do my classwork for my Sociology of Health and Illness and United States History 2 classes online. Hours after we returned from vacation, I quickly found myself back in the guard chair working.
July was pretty uneventful, as I spent most of my time working as a lifeguard and attending taekwondo classes when I could. My online classes required several hours of writing and reading a week, such sucked the life out of me. It was incredibly challenging to be disciplined enough to complete my studies after spending 10 hours in the scorching sun. With the help of my family, I mustered the strength to push on through.
During the first week of August, I finished up my summer term of classes, which was a tremendous blessing and a huge weight off of my shoulders. Shortly after that, I was admitted to Children’s Hospital for another round of treatment and three days later, my family flew to Denver, Colorado, where spent five days exploring Colorado and Wyoming. We stayed at a condo in Jackson Hole and explored the area. We dined at some local eateries, hunted for 675 hearing aid batteries, and rafted the Snake River. The last day of our trip, we celebrated my 19th birthday.
After we came back from the west, I went back to work for three days and two days before I was supposed to leave to go to Philadelphia, I jumped down from the guard chair and badly injured my ankle. Since I was in the middle of the waterpark, my foot was going the wrong way, and I didn’t have good blood flow distal to the injury, 911 was called to take me to the hospital. At the hospital, I had x-rays done, but fortunately nothing was broken. So the doctor realigned my ankle with anesthetics, and placed me in an aircast with crutches. I was sent on my way with the diagnosis of an ankle sprain.
The next day, I made the six hour drive to Philadelphia solo and spent four days with my friend Lily. Along with our friend Lekha, we explored the “City of Brotherly Love” and took pictures around Independence Hall. Later that evening, another friend, Kerry, joined us for dinner and we all spent the night at Lily’s place. We all got up early the next morning to go and take a class to become Certified American Heart Association Basic Life Support for Healthcare Providers Instructors. This was the first step toward full instructorship. That evening, Lily, Lekha, and I went to see PaperTowns in the theatres. It was really good and a nice way to wrap up the trip before we parted ways the following morning.
Not long after I returned from Philly, I was again admitted to Children’s Hospital for pain control. While I was there, Evan got his driver’s license and it was one of the happiest days of my life. No more being the chauffeur!
I also got my 1st Degree Black Belt Recommended in August, which was very exciting after all the hospital admissions and the ankle injury.
September was pretty uneventful. Doctor’s appointments, classes, homework, taekwondo, and extracurriculars kept me busy. After months of not seeing improvement in my peroneus brevis tendonopathy and synovitis in my left ankle (Layperson’s terms: my ankle was very swollen, inflamed, and painful.), my top notch sports medicine doctor referred me to a foot and ankle specialist. He told me that not only did I have the peroneus brevis tendonopathy and the synovitis, I also had an impingement lesion on my anterior talofibular ligament and the lateral ligaments in my ankle were too lax to be able to support the joint adequately. In addition, I am one of the 8% of people in the world that have an extra bone in their foot/ankle. For most, it won’t cause a problem, but because mine was pulling away from the tibia, it was causing me more pain. His recommendation was to debride the tendons and impingement lesion, tighten the lateral ligaments, remove the extra bone, and remove the hardware from my previous surgery. All of that would add up to be a major surgery. My dad decided that he wanted a third opinion. I wasn’t having any kind of surgery until that black belt was tied around my waist. I had a goal, and I was going to get it.
October started off with a bang as I landed myself in Presby’s ER for 9 hours due to a severe dysautonomia flare. For most of October, life revolved around MCI Drill planning, school, and taekwondo. I also passed my midterm at 1st Degree Black Belt Recommended, which meant that I would test for my black belt in December. So close, yet so far away.
The beginning of November was dominated by planning, preparing for, and executing Pitt’s very first Mass Casualty Incident Drill. It was an amazing success and we couldn’t have pulled it off without some help some from very special people. I was blessed to have my whole family in attendance helping out or participating.
I also saw a top movement disorder neurologist, Dr. H, who took a thorough history and did neurological and physical examinations that revealed some abnormalities. He ordered some tests to be done at a later date. He said straight up “This is not stiff person syndrome.” This declaration will be important later on.
I had a very exciting admission to Children’s Hospital where I met Neil Walker, Beau Bennett, Ben Lovejoy, and Adam Clendenberg from the Pittsburgh Penguins. I had several friends from taekwondo and the Pitt Dance Marathon visit. I also met my unbiological twin, Nora, for the first time which was very exciting. I had a marathon nine day admission. Unfortunately, it did not relax my feet, so I was sent on my way in a wheelchair full time. We quietly celebrated Thanksgiving, but everyone was very concerned about my health, so that kind of ruined it for us.
At the beginning of December, I had some very important bloodwork drawn, an EMG (which measures muscle activity), and QSART (which is basically a glorified sweat test). The second week of December marked the end of the semester and I once again earned wonderful grades, included my very first A+ at the college level (104%!). Right after my psychology final, I was admitted to UPMC Presbyterian for a few days of high dose steroids, a PICC line, and a lumbar puncture in hopes of proving that I have stiff person syndrome, a rare subtype of dystonia. It was a complication few days with some time spent in the ICU on a ventilator, but I was able to break out and finish my IV steroids at home through my PICC line. Several friends visited and I was celebrate Christmas with my family, complete with a wonderful Italian meal at my aunt’s house. The highlight of the month was attaining the rank of 1st Degree Black Belt in taekwondo even despite being in the wheelchair!
In 2015, I was stronger than CRPS. I was stronger than dystonia. I was stronger than dysautonomia. I was stronger than all of my other chronic illnesses. I didn't just survive. I THRIVED!
Bring it on 2016!
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!