Christie was diagnosed with psoriatic arthritis eight years ago after six months of pain, swelling and stiffness in her hands and feet. She had blood work done and went to several doctors, including orthopedists and podiatrists. Her blood work didn't test positive for rheumatoid arthritis and no one could figure out what was going on. The light finally came on after talking to someone with psoriatic arthritis.
“When I told him about my symptoms, he told me his had been the same before he was diagnosed,” says Christie. “I went to see a rheumatologist who asked if I had ever had psoriasis. I’d forgotten that I did have psoriasis on my scalp when I was in college, but I'd been using medicated shampoo ever since and it seemed to go away. My scalp had itched more during that six-month period, but it just didn't occur to me that it was the psoriasis. That link was exactly what we needed.”
Christie began treatments, and after trying several medications, she finally found one that managed her arthritis well enough that she could slowly work back into playing tennis. Things were going well for Christie until 2012, when one of her biggest nightmares came true.
Worst fears realized
Courtenay, then 14, ended up in the emergency room with pain and inflamed lymph nodes. She fit all of the symptoms of appendicitis and the doctors told her they’d have to do surgery to remove her appendix. But when they did an ultrasound to confirm it was the appendix, they didn't see any problems. Later that summer, Courtenay broke her arm. She started noticing that she was tiring really easily and her jaw, which had been giving her problems for two years, was becoming more painful.
Blood work couldn't confirm anything, but an MRI on her jaw did. Courtenay was diagnosed with juvenile psoriatic arthritis.
“It’s so hard because I know exactly what she’s going through,” says Christie. “I got 37 ½ years and she got 14 ½. It just feels like a raw deal and it’s so not fair that kids should have to go through any of this. I had my high school years carefree and running around with no pain and… I just don’t get it.”
Christie and the doctors agreed on treating it aggressively. She got their pediatrician to help her push Courtenay into rheumatology at Children’s Hospital. She had to fight with her insurance company when they didn’t want to cover the aggressive treatments.
“The doctors tried to fight them and it didn’t work, so I took them on,” says Christie. “It took about four weeks. I sent them phone calls and emails daily, buried them in paperwork, I sent them x-rays, MRIs, journal articles about the success of aggressive treatment. And then we finally got them to change their minds and they put her on Humira. We then began the long road of trying different biologics.”
Balancing school and arthritis
Not only was Courtenay trying to adjust to her new diagnosis and medical treatments, she was also adjusting to high school. That’s intimidating for any kid, let alone one with a special set of circumstances.
“I had just switched schools and was completely new,” says Courtenay. “When I’d tell kids at school that I have arthritis, I’d either get one of two reactions – ‘What are you, 80?’ or ‘What’s that?’ Some people say all I talk about is my arthritis. It comes up in conversation a lot because I deal with it on a daily basis and it makes it so I can’t do a lot of things. I don’t want it to define me, so I try not to talk about it all the time, but because it’s such a large part of my life, it does come up a lot.”
Courtenay ends up having to miss a lot of school because there are days – or even weeks – where the pain, stiffness and fatigue of her arthritis are so bad she can’t get out of bed. The state’s 504 Plan allows ensures that kids with disabilities defined under the law receive certain accommodations to help them succeed, such as not penalizing them for missed days, allowing them to complete school lessons at home and letting them turn work in late.
“Not everyone realizes that even though I was at school, I may have used up all of my energy and can’t do school work once I get home,” says Courtenay. “I’m fortunate to have a teacher that understands what I’m going through and he is able to help other teachers understand. When I’m at school, I try to act positive. They seem me pretending to have all this energy but they don’t see me when I’m not doing well, so they may think it’s actually not that bad.
“People I’m close with understand it a lot better. They’ve been through a lot of it with me – they know I have to give myself three shots a week, they know how much school I miss, they see me struggling walking up stairs and know it may take me longer to get somewhere, so they wait for me.”
Finding a silver lining
As devastating as it was for Christie and Courtenay to learn they share the same diagnosis, it does have its advantages. They’re able to understand what the other is going through. When Courtenay isn’t feeling well, she doesn’t have to explain it to her mom in as much detail as she does her dad. It also gives Christie the ability to be a better advocate for Courtenay when it comes to working with her school and her doctors.
“We had to switch doctors about 9 months into her diagnosis because we weren’t getting the care she needed,” says Christie. “They thought it was in her head, so I took her to my rheumatologist and she treated her very similar to the way she treated me – and she actually got better! On the flipside, it’s heartbreaking because I spent years trying to get well and I never thought in a million years that my daughter would get it and not as a teenager.”
Genetic factors play a role in psoriatic arthritis. Children who have at least one parent with either psoriasis or psoriatic arthritis are more likely to develop psoriatic arthritis. Although Courtenay has psoriatic arthritis, her younger brother, Connor, does not.
Christie walked the Jingle Bell two years after she was diagnosed and got Courtenay, son Connor and stepson Colby to walk with her. She reached out to friends and family and raised a couple of thousand dollars and had a lot of fun. She didn’t participate again until Courtenay was diagnosed. She decided to get more involved in Jingle Bell and the Arthritis Foundation now that there were two of them.
In addition to being this year’s honorees, they both serve on the Jingle Bell’s marketing committee. Courtenay has also attended the foundation’s KAT-FISH Camp for kids with arthritis and their families, for the last two years – most recently as a junior counselor.
“It’s really nice because you get treated completely normal,” says Courtenay. “Everyone else has the same capabilities you do. And it’s great to see where some of the Jingle Bell fundraising money goes!”
Why should you Jingle? Because it’s fun!
“Everyone dresses up and there are awards for best costume,” says Courtenay. “It’s so entertaining to be there and see everyone’s costumes! Last year, I saw a family dressed as a snow king and snow queen and princesses. The amount of work people put into their costumes is amazing. The whole run has a good vibe and it’s festive and gets you in the holiday mood!
“It’s a great event during a fun, festive time of year,” adds Christie. “It’s a good way to feel like you can participate in the community and give back to the community and in December people are always looking for ways to do that.”
But more importantly, the money raised goes toward Arthritis Foundation programs and helps fund research efforts to find a cure.
“Arthritis is a silent disease,” says Christie. “If you don’t have it, chances are you have a friend or relative that has it. They are so close to unlocking this disease. I think Courtenay is going to see a cure in her lifetime. The strides and success they’ve made in the last 20 years with the biologics are enormous and they’re just scratching the surface.”