It’s the second blog post in, and I already seem to have broken my promise to post every week. Nevertheless, here is what I promised: my story.
When I was about eleven, I started noticing swelling and stiffness in my fingers. As a competitive gymnast training 7 hours a day and 35 hours per week during the summer, this wasn’t an uncommon discovery, however, after multiple weeks of pain and swelling, I realized that something might be wrong. Luckily for me, I had broken my ankle a month before, so at my next appointment with my orthopedist, we asked if she could take a look at the middle fingers in both hands. After an initial X-ray and examination, she said that there was some odd discoloration on the X-rays and told me that I had broken both my middle fingers. So, I left her office with my two middle fingers taped to both of my ring fingers. Anyway, after many more appointments, and no visible improvement, we were shuttled off to another specialist. After that doctor had no idea what was wrong with me, he suggested visiting a rheumatologist; he said that it was a long shot, but he couldn’t come up with any other specialists who might know what was wrong.
Long story short, upon my first visit with the rheumatologist, I found out that I had juvenile idiopathic arthritis. At that point in time, it had already been at least 3 months since I first asked the orthopedist what was wrong with me! It turns out, none of my symptoms were indicative of arthritis, most likely explaining the long diagnosis process. For example, I had no rash or fever, only my middle fingers were swollen and hurting, and my blood work always came back as negative! So, my diagnosis is mostly based on clinical observation and reported symptoms rather than diagnostic testing. Even now, my rheumatologist isn’t sure that my diagnosis is right; I never fit the juvenile idiopathic arthritis symptoms chart well, and I never showed any other signs/symptoms of another autoimmune disease, but there is and was definitely something arthritis-like present, so here I am!
Anyway, for the first year after my diagnosis, I wasn’t on any medication. My rheumatologist said that my symptoms weren’t bad enough to warrant medication; in an effort to help me continue gymnastics at such a competitive level, he realized my pain and swelling weren’t at the point at which medication would improve, rather than impede upon my lifestyle.
Shortly after my first year at Children’s Hospital Los Angeles (CHLA), my symptoms increased. I cannot recall exactly what worsened, it was most likely an increase of swelling in my fingers, but it was decided that I start medication as soon as possible. In a later post, I will go into detail on my journey with different medications, so I will just say that it’s been a long road, and I still haven’t found the “perfect” (longer-term) medication yet.
Currently, it has been about 7 years since my diagnosis, and while I still have bad days/weeks, I know my doctors, my family, and my friends have my back. While an arthritis diagnosis at any age is difficult, it is even harder to fathom and cope with when you’re still a kid, and a gymnast. However, my journey has made me more mature, more self-sufficient, and more grateful for my support system. So to anyone who may be in my situation or has been in my situation, know that you are strong enough to make it through; pain may always be there, but so will family. Don’t be afraid to fall back on your closest relatives or friends! You are special, you are loved, and you will find a way through even the hardest days.