My family and I always went to the MS walk to support a family friend. I was 4 years old and thought of it as a fun way to see my friends and family. At the 2011 walk, though, I was doing cartwheels in a dandelion field with friends and started to feel extreme wrist pain. I don’t remember much from that day, but it’s a story I’ve heard and told a thousand times. I finished the walk, but kept complaining that my wrists were hurting.

A few weeks later, after my wrists didn’t stop hurting, my mom decided to take me to the doctor. They couldn’t find a break in my wrist, but they figured it was something similar that would go away if I was in a cast for a couple weeks. Two weeks later, the cast came off and nothing had changed. I was still waking up in pain everyday. 

That’s when the doctors first started to mention arthritis. I was 5 years old when I was diagnosed and prescribed all of my medications for the first time.

 I had to take an anti-inflammatory medication everyday, as well as get a weekly immunosuppressant injection. I was young, so I thought everyone had to take medications like this and didn’t think it was a big deal. I just really hated the smell of the alcohol prep pads that we used to clean my skin before injections.

My mom started doing research and learning more and more about arthritis as time went on. We found out that it is actually much more common in young children than people think- 1 in 1000 kids will be diagnosed with juvenile arthritis before the age of 16. We started looking for ways to help and looking into different charities. That’s when she found The Arthritis Foundation.

My cartwheel was April 30, 2011. By May of 2012, we had raised thousands of dollars for The Arthritis Foundation and through the Walk to Cure Arthritis. Our team, the Moonwalkers, was formed in March of 2012, following my diagnosis by only a few weeks. We made and sold buttons to raise awareness of childhood arthritis. The picture on the button was my hand (in my splint from physical therapy) holding my sister’s hand with the words “Hold my Hand,” written in my handwriting. “Hold my Hand,” is, of course, the title of a popular Michael Jackson song, but was also a strong message sent from a soon-to-be 6 year old. 

In April of 2012, we went back to the MS walk. Needless to say, I was not allowed out of my mom’s sight the entirety of the walk. She was afraid I would do cartwheels. I definitely would’ve. That’s the kind of kid I was.

Now, looking back on the Walk to Cure Arthritis 2012, I am blown away by the amount of support we received from the community. I was so young at the time, I didn’t even realize that there were hundreds of people there to support me. I was just excited to be at the zoo. We raised even more money for the cause at the actual event. We sold more buttons as well as raffle tickets and things of the sort. As a team, we ended up raising over $5,000 that year.

We continued doing this for years to come. 

Every year after, we’d rally a team, raise thousands of dollars, meet new people, raise awareness for a good cause, and have so much fun in the process. Within the next 5 years, we had raised tens of thousands of dollars for arthritis awareness.

There was one incident that landed me in the hospital for about a week. I had had a fever that would not go away, so my mom took me to the emergency room. Turns out, I had some sort of virus that my immune system was not strong enough to fight off because of my arthritis medication. I stayed for four nights and I remember every morning they would come in and prick my finger to test my blood. That was my least favorite part. But my teacher and classmates made me cards, which was very sweet. My week in the hospital caused me to lose my award for most book reports done. I will never live that down. But, eventually, I was released and back to my normal-ish life.

By the time I was around 8 years old, my arthritis was mostly under control, with only the occasional flare-up. Usually I would just have to wear a brace for a week or so until I would feel better. 

Then one day, in 2017, I went in for my routine check up with my rheumatologist. I was expecting a normal appointment: they would check my mobility, ask about my pain, probably take some bloodwork, and I would go home. It was anything but a normal appointment. They checked my mobility and asked about my pain, then told me I could stop my medications because I was now in remission.

My reaction was pretty much, “Okay, cool.” because I had no idea what that meant. I hadn’t lived without medication since I was four years old, and I didn’t know what to expect.

The first couple days off of medication were weird. I always felt like I was forgetting something. But, the days turned to weeks and weeks turned to months. Before I knew it, I had been off my medications for 3 years.

Then the pandemic hit. In 2020, my arthritis was taking a turn for the worse, but so was everything else in the world. Because there were so many things going on (i.e. starting marching band, trying not to get sick, learning to navigate a half-virtual world, adjusting to a high school workload, etc.), I didn’t address my problems at the time. It was pain, but the pain was manageable and did not affect me very much in my day-to-day life.

My mobility was continuously getting worse until I decided to mention it in late 2021. This was when I started talking about how painful my hands were all the time. I started losing my grip, my strength, and my overall movement in my hands. It got to a point where it wasn’t necessarily “painful” as much as I just simply couldn’t move my hands. They only hurt when I moved them.

“Okay, so I just won’t move my hands a whole lot!” was my thought. Turns out that when you play the trombone, are a high school student, and generally just live a life it is difficult not to use your hands. I found myself handing off my water bottles to the people around me to open them because I couldn’t. Twisting doorknobs was difficult, too- not only because I couldn’t grip them, but also because I couldn’t twist my hand to turn them. Simple tasks like these were making my life miserable. I was older, though, so I felt like I should have been able to deal with it on my own in a way that I couldn’t when I was a kid.

Almost two years had passed since the time that the pain came back until I decided to go back to the rheumatologist. I woke up in so much pain one morning- I could not move my left hand at all and my right hand felt like it was on fire. I was crying in the car on the way to school when my mom asked if I was ready to go back to the doctor, and I said yes.

I should’ve gone back so much sooner. I am 16 now, about 3 weeks back on medication, and I am feeling so much better already. The swelling in my hands has gone down so much and I have gained a ton of movement that I didn’t have at the beginning of this month. I can open water bottles and turn doorknobs like nobody’s business now. I am nowhere near perfection, though. I still wake up in pain everyday and my mobility is still pretty limited. I am on the mend. I know my story will not end here, and I don’t know if it will ever end. That’s the reality when you have arthritis, though. There is no beginning or end, there is just better and worse days. It is all about quality of life. I didn’t realize it when I was younger, but the pain I felt never went away, it was just covered up. The medications don’t take the pain away, they just make it less noticeable. I learned that after a few years in remission.

All of this has taught me to just be grateful for the good days and appreciate the bad days, because the bad days are what make the good days so good! Always hoping for a better future, but I’m open to any possibilities and I’m ready for whatever will come my way. 

– Katie

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