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.
The Road to New Jaw Joints at 22 