Back to School.

Not long after I made the decision to go back to school, a surgeon agreed to see me. As I prepared to go back to school, I also prepared for a make or break appointment. That June, I had my consult; although not optimistic, the doctor reluctantly agreed to perform an arthroscopic procedure. He did, however, inform us that if this didn’t work, there was nothing else that could be done. We set a date anyways, the week of American Thanksgiving, and I did my best to keep moving forward.

While most people my age start their freshman year of college figuring out how to buy alcohol and go to parties, I spent my time looking for doctors offices and where I was going to get my drugs (all legal of course). It wasn’t how I imagined starting university, but I was pretty damn happy to be there, even under the circumstances. At the time, I also felt it was best to keep my arthritis a secret, making new friends isn’t easy and I felt that if people knew of my illness it would make it harder. I don’t regret the decision, but it also made the first couple months a lonely place.

Apart from my roommate and a few choice friends, nobody knew. Even though I wasn’t taking a full course load my first term, I was busy. Not only was I trying to make new friends, navigate the world of American Greek life, and taking classes for the first time in a year, but I was also trying to get my footing in the American medical system. I will always be grateful for the healthcare system in Canada, without it, life could’ve been very different, but holy crap, if you have insurance, the American system is where you want to be. I was able to find a new rheumatologist only minutes away immediately. Within a month, I had all the medications I needed and the right care, all covered by insurance.

That November, I left for thanksgiving on the Saturday to have surgery on the Monday. It was a quick two hour procedure with much less swelling, thank god, than the last surgery, I was even able to eat turkey on the Sunday night before I headed back to school. The rest of first year flew by, I started my computer science classes and even decided to add a math major, and made some great friends. I did my best to get involved in everything I could to form bonds that most people find by going out for drinks.

Unfortunately, even though my school life was going well, things were far from perfect. The surgery provided about a month of relief until the pain came back, so we were officially out of options.

The Beginning.

I was diagnosed with Juvenile Idiopathic Arthritis at the age of three. Having been diagnosed at such a young age, I never felt that it different than my peers. I missed more school than my classmates and at times I had to wear a wrist brace, but these didn’t bother me, in fact, I kind of liked my teal brace, I saw it as an accessory.

There were times, however, that I went through what I call my, “Why me?” phases where I was pissed off at the world. I remember when I was eight, I saw a TMJ (jaw joint) specialist for the first time and he told me that I would need corrective surgery to repair the damage done from the arthritis. It was the first time that I was seeing the damage that arthritis could do, unfortunately, it would not be the last time. Even after I had the surgery at 16, missed the first three weeks of school, and had a swollen face for six months, I never felt that my arthritis was that bad. It wasn’t until  half way through grade 12 that I truly felt as though I had been cheated.

I remember it pretty clearly, it was the end of November, I had just received acceptance from my dream school, and I was looking forward to finally graduating. Everything was how it should’ve been until one morning i woke up, and it wasn’t. I woke up in a kind of pain that was different from anything I had experienced, with a mouth opening that was half of what it should have been. After ten weeks of physical therapy and multiple doctors appointments, there was little improvement, so I was told to expect surgery. I was sent for an MRI expecting one result, but on the night of my high school commencement, I was given news that nothing was as expected. Instead of being told I had a displaced cartilage disk, I found out that I had active inflammation as well as extensive joint damage on both sides. I guess it’s safe to say my commencement night was a night to remember.

The doctors scrambled to switch my medications as well as schedule a guided joint injection, all with no avail. On July 13th, one day before my 18th birthday, I withdrew my application to the University of Oregon for the 2013-2014 school year. Over the next year, I struggled to find a surgeon that would see me to consider the option of an arthroscopic procedure. Being 18 years old, with active inflammation and extensive damage, most surgeons refused to see me because they attributed the pain to inflammation. What they often failed to consider, is that I was three when I was diagnosed, so I had grown up knowing what arthritic pain felt like. From the moment I felt this pain, I knew it was different. When I was finally able to see a surgeon, he told me the pain was all muscular. He refused to do the surgery, but agreed to do Botox; even though I didn’t agree, I went along with it. I was left with no relief as well as no muscle strength, needless to say, it was not successful.

It was at that point that I decided I would return to school that fall. I had taken a year off to find answers and after receiving none, I realized that I probably wasn’t going to get any anytime soon. It was no longer about getting rid of the pain, instead it was about learning to live with it.