The Story of My Lupus Diagnosis – A Pediatric Case

At the age of 14, the pain and fatigue started to creep up on me. Those around me thought it was growing pains, I thought I was weak. Around this time I was getting pretty serious about basketball and I had just finished my first season on the high school basketball team. My dreams of playing basketball in college would soon be crushed.

Let’s go back to a cold and sunny Vegas day in March of 2008. I am a freshman in high school and on this day we are running the mile during physical education. You can picture me as a tall 6’0 blonde with hair running past my shoulders. Once class begins, my friends and I put on our PE uniforms and head up the stairs to the field. I begin to notice that I’m having trouble walking but as I always do, I push through and don’t say a word. As an athlete, I never enjoyed running the mile but I was always competitive so I pushed until I couldn’t. When I couldn’t push anymore, I walked with a friend of mine and showed her how my hands were turning blue. She mentioned to me that her cousin has this and had to get tested for other conditions, maybe I should too.

The blue hands are a sign of Raynaud’s Phenomenon. At the time, I had no idea what this was. It was one of the only outwards signs I had of lupus manifesting inside of me. 

Once we were finished with the class we had to head back down the stairs to return to the locker room. The only problem was at this point my body was starting to fail. I could no longer walk without help and needed my friends to help carry me down the stairs. All I could think is, “why am I so weak?” I was panicking on the inside because in just a few days I would be trying out for one of the top teams in the state. How could I try out when I could hardly walk?

After a few days of resting it was the night of the first day of tryouts. My hip had recovered but I still wasn’t feeling my best. I pushed my hardest throughout the tryouts and it wasn’t until we had to run line drills that I began to fall apart again. If you don’t know what line drills are, basically it’s a drill where you sprint back and forth until you are completely gassed. I attempted the drills despite feeling like passing out. I didn’t want to look soft and I had immense pressure on me to make this team. In between the drills, I did let my parents know how I was feeling and they repeatedly had me take a seat. As a stubborn 14-year-old, I knew this didn’t look good to the coach so I decided to keep going. Eventually, I looked down and saw that my hands were turning blue again. I went over to my parents and showed them, knowing this can’t be good. They automatically freaked out and asked my friend’s father (a cardiologist) his thoughts. He urged us to go to the hospital, especially with how weak I was feeling. 

That night we made it to the hospital parking lot but my hands were no longer blue. We decided that we would call the doctor first thing in the morning to have them check me out. 

The next day, I was able to get an appointment with my pediatrician. She listened to all my symptoms and she noticed how swollen I was. This was something I was unaware of. I had no idea what to look for and as I mentioned above, I just thought I was weak. Immediately she asked me to stand up and she checked my limbs for Marfan’s syndrome. If you are unaware of what Marfan’s Syndrome is, it is a genetic condition that can impact the heart, blood vessels, lungs, skin, bones, joints, and eyes. Marfan’s is typically seen in individuals with long limbs. She ruled out that it most likely was not Marfan’s and she then ran bloodwork to check for other conditions. Due to the swelling, she said she would be referring me to a pediatric rheumatologist.

It took a few weeks before I could see the pediatric rheumatologist. Those two weeks were a few of the toughest weeks in my life. The unknown of what is happening to you, trying to Google different conditions, the fear on my parent’s faces, and let’s not forget the pain. At night, I took ibuprofen to control the pain and some nights my mom would sleep next to me out of fear of losing me. I had nights where my dad had to carry me up the stairs and mornings when I couldn’t open the milk for my cereal.

I tried my best to stay positive but at times I would get lost in the overwhelming thought that the life I once knew was over.

When you are waiting on a diagnosis, your primary care physician won’t prescribe any medications until you are diagnosed by a specialist. According to the Lupus Foundation, it can take nearly six years (on average) for people with lupus to be diagnosed from the first time they notice symptoms. I was very lucky that it only took five months to realize something was wrong and it took a few weeks for me to get into a specialist after my first noticeable symptoms. If I didn’t have Raynaud’s, I think it would have taken a lot longer for the process to be initiated.

On the day of my appointment, the first thing I noticed about my Rheumatologist’s office is that the walls are dancing with murals of animals. The office is warm and bursting with color yet the patients are young, sick, and in pain. It’s a somber atmosphere and sadly, I am the oldest patient in the room. After my parents work through paperwork with me, we are called back for vitals and I’m placed in the monkey room. The doctor approaches me, she is thorough and petite. Immediately she grabbed my hands and asked me to take off my socks and shoes. I am examined from head to toe without a word being said. She steps back and takes a seat.

She says to me, “you either have lupus, rheumatoid arthritis, or scleroderma. Your bloodwork is showing high levels of inflammation. You are also showing a limited range of motion in your joints due to swelling. I will run more bloodwork and see you in a few weeks. No basketball and stay out of the sun.”

We return to the car and try to stay positive despite the news. At this point, I realize that I have some kind of illness but I have no understanding of what they are. I had never heard of lupus or scleroderma. How did this happen?

Once I had a confirmed diagnosis of lupus, I didn’t do much. Most of my memories for the rest of the year were of me watching Grey’s Anatomy and The Fresh Prince of Bel-Air. I have some memories of me googling, “can you play basketball with lupus” but that’s a story for another time. 

Being diagnosed with an illness is difficult no matter what it is. It is life-altering. In February I was working toward going to a division one school for basketball and in March I was sitting in a doctor’s office being diagnosed with an incurable disease. It has been a tough journey but it has led me to where I am today. I share my story because I know it helped me to see that I was not alone when I was diagnosed. At the time, I wanted to make sure there would never be another 14-year old that had no one to turn to.

Thank you for reading the first part of the many stories that I will be sharing with you. In this blog, I will be sharing my chronic illness journey, health tips, my favorite recipes, and my life moments as well.

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