Her own painful experiences have driven Stacy to advocate for people living with arthritis, like her.
For the 54 million adults and 300,000 children in America living with arthritis, pain is a way of life. In the Arthritis Foundation’s ongoing INSIGHTS study, 100% of respondents reported that their pain is so significant that it affects their daily lives.
Stacy Courtnay knows all about pain. Hers was uncontrolled for years due to her rheumatoid arthritis (RA).
She jokes now that stress from getting married is what gave her RA in the first place. Her pain started shortly after her wedding 17 years ago to her husband, Taylor, when she was 23.
But it wasn’t a joking matter. Her feet felt like they’d been pounded with a hammer. Then pain shot into her shoulders so she couldn’t even lift her arms, and it spread to her wrists, which swelled up.
Finally, at age 25, she was diagnosed and started on prednisone. The medication, intended to knock down the inflammation, helped her symptoms and she stayed on it. But within a couple of years she was pregnant.
A Point of Desperation
Pregnancy brings relief from RA symptoms for some people — but not for Stacy. She had stopped the prednisone due to her pregnancy. But without it she couldn’t even walk, so she had to resume the medication. (Despite the risk and her worries, she and her baby were not affected by it.)
After her son, John, was born, her RA only got worse. Stacy could barely move. Her husband had to carry her to the bathroom, and she could barely pick up a cup, much less her new baby.
“[Taylor] was the one who was taking care of me. Then when we had John, my parents, who lived about an hour away, moved in with us,” says Stacy, now 42. Taylor and her parents were all working, “but they all tag-teamed because I couldn’t physically hold John or feed him, and I would just lay in bed and cry. I had really bad postpartum depression just because I couldn’t take care of John, and I was in pain, and I was already tired from having a new baby.”
Her rheumatologist started her on a biologic medication, which didn’t work for her. Neither did a second. Or a third.
Frustrated with the medications and desperate for pain relief, she turned to what she now calls “witch potions.” She tried all sorts of diets — no-sugar, a raw diet, a diet that is supposedly based on one’s blood type. She went to a clinic to receive mineral infusions, and she tried chelation therapy, which promises to remove heavy metals from the bloodstream. She even tried drinking food-grade peroxide for a “peroxide cure,” and “oil pulling,” which is supposed to cure by pulling toxins from the body. All this, while putting off her biologic injections.
Finding Her “Miracle Drug”
Finally, on a Saturday, she called her rheumatologist in tears and confessed what she had been doing. Her doctor put her back on prednisone, then added a different biologic — her “miracle drug,” which has successfully controlled her RA symptoms without side effects since 2012.
Stacy’s RA was very active for four or five years before she tried any disease-modifying drugs, so she’s lucky that her only physical signs of RA are slight damage in her hands, surgery on one wrist and large nodules on her elbows that, as John pointed out, make her look like she has four elbows — a name she now uses for her fundraising team for Walk To Cure Arthritis.
When she wonders aloud about taking a drug holiday, her husband and family shut that idea down immediately, Stacy says with a laugh. Maybe someday she’ll try it, but the elbow nodules and the fatigue she still battles constantly — with a 47-minute daily nap — demonstrate that her RA is still active, her doctor reminds her. “‘You were so bad for so long, you don’t have any side effects from [the medication]; why would you do it?’” he points out. “So, for the sake of my family — they gave up so much to take care of me — I’m not going to try a drug holiday,” Stacy says. “Maybe eventually, but right now, it’s not worth it. My quality of life is so great.”
She does worry that her medication might stop working at some point, which sometimes happens. Instead of letting the worry control her, she works with a therapist to deal with the emotional strain of having RA. “I always struggled with anxiety,” she says. “For so long I was so petrified of having this chronic disease because it’s not just your joints.” She knows it could also affect her organs or her eyesight, and the medications come with their own risks.
In addition to sticking with her meds and taking naps to manage her RA, she still uses a lot of complementary therapies, including turmeric, collagen and probiotics supplements, eating organic foods and reducing gluten. “I don’t know if they work or not, but in my mind, they work,” she says. “It’s not like I’m hard core about any of those things. I don’t really think any one thing is going to cure me, but maybe all together it’s just helpful.”
She also exercises a lot — high-intensity interval workouts, light weights, boot camp-type workouts. The exercise helps her arthritis, she says, but that’s not the main reason she loves it. “It’s like a gift that I’m feeling so good. I try to do six days a week just because I can."
A Successful Career
Because of RA, Stacy wasn’t able to work her way to the top in corporate America, as she had envisioned. But she pours her heart and energy into volunteering for the Arthritis Foundation to help others like her who live with arthritis.
In addition to fundraising, she volunteers as an advocate, she serves on the Patient Leadership Council and Atlanta leadership board and she was named the 2020 Walk to Cure Arthritis adult honoree.
“I love it, and I love connecting with the people and sharing our stories and our struggles,” she says. “I feel like I’m a success story, and I hope I give other people hope.”