My Diagnosis: The Journey with Arthritis Begins!

I was diagnosed with Juvenile Rheumatoid Arthritis at just 15 months old. “How were you diagnosed so young!?” is usually the first question people ask. Well, at that age I had already learned to walk and my mother recalls that one day, I decided to revert back to crawling. Confused, she picked me up and noticed one of my knees was three times its normal size. She quickly scheduled an appointment with my pediatrician who later admitted me to the hospital. They ran a slew of tests and put me on an anabiotic IV to rule out that the swelling wasn’t due to an infection.

My pediatrician told my mother, “Worst case scenario she has rheumatoid arthritis or lupus.” I was released from the hospital 2 days later, (still with my softball-sized knee!) and the doctor asked to see me once a week to monitor the swelling. Come the second or third week, my mom noticed in the waiting room that my index finger was also triple its normal size. At that point the pediatrician referred us to a rheumatologist, which lead us to Children’s Hospital of Los Angeles, where I was diagnosed with Juvenile Rheumatoid Arthritis (JRA).

Obviously at that age, I have no recollection of all the doctors appointments, procedures, casts (as pictured above!) and hospital visits. While I’m sure it was an incredibly stressful time for my family, I often admit to being quite thankful I was diagnosed so early on; because I don’t know life any differently. 

First Recollection of Arthritis

When I think back, the first real memory I associate with arthritis was around 5 or 6. It all stemmed from my deep deep hatred of Sundays and applesauce—Methotrexate day. Until I was old enough to actually swallow those seven little orange pills, my parents would crush them up and mix them in a container of applesauce. Eventually I couldn’t bare even a spoonful of the disgusting concoction and learned to swallow those evil little monsters. I’d take the pills at night and the process seemed to take an eternity. I tried tricking my parents a few times that I was SO tired and wanted to go to bed early. I hoped and prayed they’d forget to give me my medication… it never worked. 🙂 

I took Methotrexate in pill form and later injections, until the side effects became overbearing. Then came…

• Enbrel
• Prednisone
• Lyrica
• Gabapentin
• Orencia
• Humira
• Actemra
• Topamax
• Remicade
• Xeljanz
• Rinvoq
• Back to Humira
• Now finally TALTZ!

The Flare that Changed Everything

One of the biggest flares I’ve had to date happened in 2012, the start of 9th grade. I consider this flare the turning point to which I felt my RA completely changed my life course.

 Going into high school I was in a medicated remission and thought I could concur the world. I made the cheer team and was essentially Arthritis free! It is so easy to forget how bad things can be (health wise) when you’re doing really well. The problem was — the school I was attending was an all girls college preparatory school located on a hill…literally. Meaning I had to climb over 300 STEEP steps every morning just to get to my first class.

Quickly I learned — this wasn’t the school for me. My arthritis flared immediately and I began missing copious amounts of school. Considering this was a college prep program, our workload was double the normal amount and I fell far behind. The day before I was supposed to return to school from Christmas break, my biggest RA flare had just begun. Long story short, I missed nearly two months of school, was hospitalized, and in a constant battle with insurance trying to get approval for new medications. Subsequently, I had to leave school and start over once my health improved. 

The Road to Recovery

After a few months I was finally back on my feet…literally and figuratively. I started an independent study program to catch up on the months of school I missed. This sort of schooling was my match made in heaven. (I’ll eventually do a blog post on how I managed school and chronic pain…Stay tuned!)

Working at my own pace and on my own terms was perfect for me. I even managed to graduate high school early! An entire year and a half before my classmates. With a generous amount of free time on my hands, I took to writing and acting which have always been passions of mine. Graduating early meant I could take extra curricular’s more seriously. 

Pursuing New Endeavors

I’ve been apart of the entertainment industry since I was around 3 years old. Up until high school, I had really only ever worked in print or commercials. Looking back, I believe wholeheartedly that my high school flare-up was a blessing in disguise. I always thought I’d go to USC, cheer for college football, and join a sorority. I don’t believe I would’ve ever truly pursued acting if I followed that route. I’ve been fortune enough to work on several television shows and films and have met life-long friends along the way. I decided to enroll in online college to better accommodate my work schedule and health needs. In early 2020, I proudly graduated Antioch University with a B.A. in Liberal Arts with a focus in creative writing. 

This is what I meant by my RA changing my life course!

Navigating my Twenties

As for my RA now…It’s been a bumpy ride the last couple years with quite a few medication changes and lifestyle alterations, but thankfully I’ve plateaued for the time being. I’m currently on TALTZ, self administering injections once a month, and CELEXA which I take for my fibromyalgia. (I was diagnosed in 2011… I can get into that ordeal another time!)

I’m really excited to connect with people on how RA/fibro/chronic illness has impacted our lives. I hope I can provide comfort to others by reminding everyone that none of us are alone!

If I could emphasize one thing: yes, arthritis does suck. Yes, it can completely derail what feels like your entire life…but be patient! Pain is only temporary. I completely understand the frustrations and often times I let them get the best of me. I think ‘Why me!’ or ‘This is so unfair!’ (Which it is!!) But I also truly believe I wouldn’t be the person I am today if I wasn’t forced to overcome these battles. I am stronger, smarter, and tougher. AND it’s led me to live an incredibly creative lifestyle that I don’t believe I would be apart of if it weren’t for that awful flare in 2012.

I hate to say it, but everything really does happen for a reason.

Talk soon 🙂

Alexa