BILLINGS — When the sun sneaks through her bedroom window, Jessica Ellis fills with faith that the day will be a good one.
For Ellis, good is a relative term, though. It has been her entire life. In truth, what the sun, and the warmth it brings, means is that her day might not be quite so bad.
Ellis, a senior on the Billings Skyview softball team, was born with palindromic arthritis, a rare auto immune disorder in which flare-ups cause severe pain and swelling in her joints and, in her case, also affects her sternum and eyes. While flares can last hours or a week or more, Ellis deals with constant pain and, at one point, was taking 12 prescriptions three times a day.
While she may not feel the piercing pins-and-needles sting all the time, she knows it’s never really gone, either. Cold days make everything worse, and so, on this bright, sunny day before a recent practice, she felt, well, good.
“Like, right now, I feel zero pain,” Ellis said. “But of course, it’s there. I know it’s there. I just know that I’m used to it. So I would say I’m having a good day, but I feel like if somebody else felt the pain I feel, they’d be, ‘Oh, this sucks.’ But to me it’s a good day.”
Cindy Ellis said her daughter has never had a bad day, even under the most trying of conditions. As a young child, Jessica would frequently get bloody noses and have difficulty breathing because of pain in her chest and rib cage.
Originally diagnosed with juvenile rheumatoid arthritis at 18 months, Jessica and her family finally received a more specific answer 5½ years later at Children’s Hospital in Denver. According to Cindy, they learned that Jessica was just one of 70 children in the world with the more severe palindromic arthritis.
To help her 7-year-old daughter understand her condition, Cindy and Jessica collaborated on a short story that told the tale of Jessica and her favorite stuffed animal, “Dr. Doggie,” and their adventures at the hospital.
“That’s when I finally understood people aren’t supposed to hurt all the time,” Ellis said.
Ellis remains the only youth in Montana with the disorder, her mother said.
Though playing sports brings on even more pain, it also brightens Ellis’ outlook.
She batted .370 and hit a team-high four home runs last season for the Falcons. Her 19 RBIs were second on the team. One of the keys to her successful season, Ellis said, was learning how to go on without all the prescriptions designed to minimize her pain. Unfortunately, other drugs were needed to counter-balance the side effects, and in the end, it all got to be a bit much.
Before her junior volleyball season in the fall of 2017 — she was also an outside hitter for the Falcons — Ellis and her mom, Cindy, with their doctor’s consent, decided to ditch the pills and injections. Ellis decided to manage the pain on her own by being honest with herself, her mom, and softball coach Michael Falcon. She promised to tell everyone when she needed a break.
Ellis rarely takes one, though. She played in all 18 of Skyview’s games last season. Falcon, in fact, wasn’t aware Ellis suffered from her condition until her sophomore season.
“She’s not one to draw attention to herself by using this as an excuse,” Falcon said. “She does a good job now that she’s older of communicating when there’s days she needs to take it a little easy, take a step back. But for the most part she’s pretty self-reliant, which is pretty impressive.”
Ellis tries to “stay ahead of the pain” by taking Tylenol Arthritis. After games, she’ll alternate ice with a topical cream like Deep Blue that Cindy massages in every 20 minutes from the moment she gets home until she goes to bed.
When her athletic career ends, whether it be after high school or college if a program comes calling, Ellis will have her right knee replaced. As soon as that surgery is healed, the left knee is next.
Those are the most-affected areas now. Her ankles and toes are bad, too, and her left shoulder is slightly better off. Someday surgery may be required, as well. Ellis said its baffling to those who work on her why her right throwing shoulder is unaffected, as are both elbows and all her fingers.
Though the outer edge of the ears are largely made up of cartilage, Ellis’ are pain-free, though her nose aches when the weather turns colder. The cartilage in her sternum is still affected by the weather, too, making it painful for her to breathe in the winter. A flare in September turned the vision in her right eye to a fuzzy blur (she played most of the volleyball season with it like that), and Ellis said doctors believe the vision in that eye will eventually go dark entirely.
“It’s really strange to think about, you know, one day I really won’t be able to use my knees anymore. One day, it’ll all just go,” Ellis said. “I try to think about that as little as possible because I’m here right now. I can play right now. Let me play, let me do what I want to do until I just can’t anymore.”
Cindy said that’s just how her daughter is. Jessica doesn't want the disease to define her, and she’s fought through so much in order to be able to stay in the present to worry too much about the future. Nothing, both mother and daughter say, will keep Jessica off the field.
“Every challenge that’s she had she’s just faced it,” Cindy said. “She just says, ‘OK, this is what I have to do to get by.’ She just wants to be a part of life and whatever that brings her way.”
Through a family connection, Ellis has a job lined up at a resort in Kaua'i after she graduates if she wants it.
Seems perfect. She could catch all the sunny days she could want.