Terminally ill 29-year-old to end her life
‘I Went Undiagnosed for 17 Years’: Julie’s Psoriatic Arthritis Story
Don't Miss This
Sign Up for Our Living with Psoriasis Newsletter
Thanks for signing up!
Julie Cerrone is no stranger to pain. When she was 10 years old, she began to feel an unrelenting twinge in her left knee during softball practice. The discomfort sent her to the doctor’s office, where she was told her meniscus was torn and she would need knee surgery. Five surgeries, several wrong diagnoses, and 17 years later, Cerrone was finally diagnosed with what had really been behind her symptoms all those years: psoriatic arthritis.
The Road to a Diagnosis
Psoriatic arthritis is a chronic inflammatory autoimmune condition that causes joint pain, stiffness, and swelling. Because the symptoms aren’t always obvious, it’s not the easiest to diagnose, says Paul Howard, MD, a rheumatologist and the president of Arthritis Health in Scottsdale, Arizona.
That may be why it took so long for Cerrone, now 29 and a resident of Pittsburgh, to get the correct diagnosis. She remembers spending the greater part of her childhood having some kind of physical therapy or using a brace or crutches as doctors attempted to figure out what ailed her. One rheumatologist did mention psoriatic arthritis, she says, but he didn’t want to put her on a biologic medication because she was so young, and there weren’t any FDA-approved treatments for children.
Fortunately, Cerrone’s symptoms disappeared for a few years after high school. But when she started working as an information technology consultant after college, the symptoms came back worse than ever. “It was a very strenuous job,” she says. “I would fly out on business Monday and not come home until Friday.” As the stress mounted, Cerrone started feeling worn down, and the pain down her leg returned. “If I moved even a little,” she recalls, “the pain would be agonizing.”
The next three years were filled with confusion and misdiagnoses — from sciatica to a thickening of her synovial tissue, the latter of which led to two back-to-back knee surgeries in 2012. Then, in December of that year, things came to a head. “My leg swelled up so much I couldn’t even put pants on,” Cerrone says. That’s when her doctors finally discovered that the real cause of her symptoms was a severe flare-up of psoriatic arthritis. Cerrone was then officially diagnosed with the condition.
Learning to Manage Psoriatic Arthritis
Since her diagnosis, Cerrone has encountered new challenges. “I had weeks where my fatigue was so severe, I’d spend six out of seven days in bed,” she says. She also can’t walk without crutches anymore — not just because of psoriatic arthritis but also because of avascular necrosis, a condition in which bone tissue dies from the lack of blood supply.
Despite these drawbacks, getting the right diagnosis has allowed Cerrone to become an expert in managing psoriatic arthritis. She now calls the condition a blessing in disguise: “It gave me a chance to start a career helping others.” Cerrone is now a certified health coach and has been blogging about living with psoriatic arthritis for years. “I really have this gut feeling,” she says, “that I’m meant to help other people live better with chronic pain."
Here, she shares her most important dos and don’ts with others who have psoriatic arthritis:
1. Do become your own health advocate.
Managing psoriatic arthritis requires that you be proactive, Cerrone says: “So much pressure is put on doctors to have time to tell us everything we need to do to get better.” But if you learn as much as you can about psoriatic arthritis on your own and are vigilant about your symptoms, you can go a long way toward helping yourself. “I feel as though I get more concrete answers from my doctors now,” Cerrone says, “because I’ve become more knowledgeable and am more prepared to ask the right questions.”
Dr. Howard agrees. With a little self-education and good communication, you can help your doctor help you. “Organize yourself and even write down questions,” he recommends, “so you’re not distracted during your appointment.”
2. Don’t rely only on medication.
Once she received her diagnosis, Cerrone’s doctors put her on methotrexate and a biologic. While she says that both medications helped, she also credits other components of her treatment plan for her symptom relief.
- Dietary changes:Cerrone is a big fan of the elimination diet, which involves systematically eliminating potential trigger foods — such as gluten and red meat — from your diet. That’s how she discovered she had a bad reaction to dairy foods; she also felt a significant energy boost after cutting out grains. “My fatigue is drastically different now,” she says. “I went from spending five to six days a week in bed to just one day a week.” Her inflammation markers have also come down to healthy levels, and she mentions an “awesome side effect”: weight loss.
- Exercise:Cerrone regularly practices yoga and water therapy — which involves walking on a treadmill in a warm, shallow pool. These exercises have helped her develop physical strength and flexibility as well as inner calm.
- Alternative therapies:Cerrone also includes meditation in her routine. “When you’re diagnosed with an autoimmune disease, it can be overwhelming,” she says. “Lots of things are out of your control, and exercise and alternative therapies have brought me back to focus on the things Icando.” Other alternative therapies to consider include acupressure, acupuncture, massage, and reiki.
3. Don’t give in to peer pressure.
It’s important to stick to your limits when you have psoriatic arthritis, Cerrone says. She had to learn this lesson the hard way, she says, recalling an instance when she gave in to peer pressure and joined her friends for dinner despite not feeling well — and then spent the next day in bed.
“When you’re feeling bad or experiencing a flare-up, well-meaning friends may advise you to get out of the house to feel better,” she says. “But they don’t know what you’re going through and what you really need — only you do.” Listen to your body, and also take the time to educate your friends and loved ones, advises Cerrone, who says that her friends have now come to understand her needs better.
4. Do join the psoriatic arthritis community.
Depression is a threat to many people who have psoriatic arthritis, but support from others can help alleviate low mood and feelings, according to a study published in 2014 in the journal Rehabilitation Psychology. While family and friends can offer significant support, it’s reassuring to see how others overcome challenges you yourself face. “There’s something about hearing ‘Oh, me too,’” says Cerrone. She believes Twitter, Facebook, and other social media are great tools for connecting with others.
5. Don’t despair.
No matter what challenges psoriatic arthritis brings from day to day, Cerrone strongly believes in keeping perspective. She lives by her blog’s title: It’s just a bad day, not a bad life. “Our body hears everything we are thinking, and negativity won’t help,” she says. “But if we stay optimistic, we can give our bodies a real chance to heal.”
With so much behind her, Cerrone is optimistic about the next decade. “My 30s are going to be my best years ever,” she says. “My health is finally under control, and I have so much to look forward to.” With the right lifestyle modifications, treatment plan, and support, so do you.
Video: Teenagers Mysterious Pain Finally Diagnosed as Slipping Rib Syndrome
Prince Harry and Kate Middleton Have the Cutest Brother-Sister Relationship
DIY Fishbone Chain Crystal Bracelet
How to Play a Coined Spirit Game
Japanese chef serves sushi to your hand
How to Clean Brass Handles
You can start displaying radical candor by getting and giving concrete feedback
How to Act As Different Characters (Characterisation)
Lift More, Lose More
How men and women react to flirting outside their relationship
Cate Blanchett’s skin care routine revealed
How to Decorate Candles
Living life, even if it means more pain
How to Take a Break From Your Phone More Often
MORE: Diane von Furstenberg on Self-Confidence: I Like Myself aLot’