Brianna Scandell

For other children with Juvenile Rheumatoid Arthritis, I would recommend that you keep a balance in life. I think you have to balance the unfun parts of being sick with some fun times. If life is a balance of good experiences and bad experiences, you can’t let the bad out weigh the good. You have to have good memories to hold onto when you’re stuck in a hospital bed or missing out on an opportunity. When I think back on my time as a teenager, what I remember most clearly are the days my mother and I spent together doing fun things. When I think back on my times in the hospital, I try to remember playing battle ship with my mom and getting a huge ice cream cone in the cafeteria after having blood work. I think you have to let go of the bad days. When I am getting over surgeries and in pain, those are the days my mother and I decide to forget. I’ve struggled to let go of all of the experiences and opportunities I’ve missed because I was sick.

One of the most difficult parts of growing up with a disability was missing out on a lot of the experiences that teenagers usually have. I couldn’t go to a typical high school. I didn’t get to go to prom. I couldn’t go to bible camp with my youth group because it takes place on Destin Beach in Florida, where pressure changes in the ocean would cause inflammation in my joints. One time my friends took a trip to a lake, another time they went rock climbing and didn’t invite me. They didn’t talk about it around me or post about it on social media. I knew they were trying to spare my feelings, because I couldn’t go. It hurt hearing them talk about summer camp and prom dresses, but it also hurt realizing they felt they had to hide things from me. There were many times I felt left out or not normal.

Something that often happens when I tell someone about my disability is they don’t know how to react. Sometimes they don’t understand what my disease is, even after I explain it to them. Sometimes they try to ‘help’ by suggesting things like ”I heard drinking lemon extract helps with arthritis”. Some people try to sympathize by saying they have arthritis in their finger, confusing a stiff finger and an auto immune disease. Sometimes they say, “Oh my grandma has arthritis, too.” It bothered me at first, but then I realized in their own way they are just trying to help or make a connection. I know that people think Arthritis is an “old person’s” disease. I also know that people do not know much about Juvenile Rheumatoid Arthritis.

Shortly after discovering my disease, it was difficult getting people to understand what was happening to me was serious. One of the first things, I was prescribed was methotrexate. It is a chemotherapy drug with nasty side effects. About a month after starting it, I went to a sleep over at a friend’s house. I had previously explained to her that I have Juvenile Rheumatoid Arthritis, and that I am on some harsh medications. She didn’t seem to understand the severity of my issues until I threw up in her car. The night of the sleep over I couldn’t fall asleep due to my joint pain. The next morning, I felt like a nauseous zombie. My friend wanted to go to the mall, and I thought I could make it through a day of light shopping. I didn’t want to prevent her from doing something she wanted. So, I went along with her. Shortly after getting in her car, I threw up. Your friends totally love it when you start puking their cars. It’s a big popularity booster. We immediately went back to her house and called my mom. While I continued getting sick in my friend’s house, my friend was apologizing to my mom suggesting that some of the food she gave me had gone bad. My mom had to explain to her that this happens a lot now. I think that was the moment she first started to understand that this wasn’t just something that could be fixed. It also was the moment I realized my disease would impact me socially. Our friendship kind of fell apart after that. I don’t think she knew how to handle what I was going through. This was common, even among the friends who stayed with me. I had to realize that the problem wasn’t me.

Another struggle I had was having to wait to enter college until I had multiple surgeries. It was difficult watching my friends graduate high school and move away to college. I think its always difficult to part ways with friends, but I felt left behind. While everyone else was making new friends and starting a new life, I was stuck at home. I took those feelings and poured them into getting a good ACT score and keeping up with online high school classes so I could be ready for college when my time finally came.

I had a hard time getting diagnosed. My regular doctors did not know what it was. I once was taken to an emergency room to get help. My legs had become stiff, and I could not walk. They did labs. They decided not to keep me, and they sent me home. No one ever gave us the test results. I continued to go to my local doctor who did not recognize my disease. I was sent to physical therapy without having any tests. It did not help. I had a lump on my leg, that my doctor said was hard fat. I was finally diagnosed when my mother worked in a clinic on an Airforce base. She told them how much trouble I had walking and about the lump on my leg. They suggested labs to have done. My mother sent a fax to my doctor’s office asking for the labs. A nurse there did the lab slip. My mother picked it up and took me to the local hospital’s blood tests area. The next night, she took me to an urgent care. They did an x ray. The doctor told us, I had a bone tumor that looked non-cancerous by it’s shape and size. The x rays also showed damage to my hip bones. The urgent care doctor could see the labs. With my labs and x-ray the doctor said I also had Juvenile Arthritis. They helped us get appointments at St Louis Children’s Hospital.

I met doctors at the hospital who helped me. My lab results for my SED rate (marker of rheumatoid factor in the blood) was so high it was off the normal lab charts. They tried many medications until they found an infused medication called Rutuxin that worked. I had Rutuxin infusions over an 18-month time period. They also made plans for me to have a total reverse shoulder replacement, a hip replacement, and eventually my jaw replaced. I had to start using a wheel chair. I also had problems eating and speaking. I had my shoulder replaced, and I could start to move my arm. I had to have my hip replaced next, but I could not open my mouth far enough for them to help me breath. So, I had to delay that surgery and work on getting a bilateral jaw replacement. Once I had my jaw joints replaced, I could eat and talk more. I then had my hip replaced that allowed me to walk. In preparation for my jaw surgery, my surgeon wanted all my records. It was then when we found the labs results from the Emergency Room visit when I was about 10 years old. The results that I never received as a child showed that my SED rate was very high.

I would say that an important part of staying healthy is having regular check -ups with labs. As a child, my physicals did not include bloodwork that would have detected my disease. I had all my normal physicals and normal doctor visits. They did not catch my disease before it damaged my joints. I want to advocate for children’s health work ups and physicals to have normal lab work to check RA factors, SED rate, white counts, and other markers for cancer. Prevention is key to staying healthy. I want to help other children who have my disease deal with all the issues Juvenile Rheumatoid Arthritis cause people. I’m starting college with the hope that I can become a Rheumatologist or a Scientist who develops medications for my disease.