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Living With Rheumatoid Arthritis: Julies Success Story
9/23 16:56:05

Julie was an active teenager who enjoyed softball and sports, until juvenile rheumatoid arthritis crippled her body. Read her incredible story.

A few years ago, because of her rheumatoid arthritis symptoms, Julie Tollinchi, of Bloomfield, N.J. was unable to walk to her car — never mind drive it.

When she was 13 years old, Tollinchi woke up with a sore shoulder. Being a busy, active teenager, her mom thought she had slept on it the wrong way and that the soreness would go away, but it didn't. Then one day her left knee swelled, and the swelling wouldn't go down. Nearly 10 months later, Tollinchi was diagnosed with juvenile rheumatoid arthritis.

At first, her rheumatologist thought the disease would go away within a year of the diagnosis, so Tollinchi and her family felt hopeful. But by then, her juvenile rheumatoid arthritis had spread, affecting roughly 90 percent of her body.

"I have it basically from the tips of my fingers to my jaw to every joint in my body," she explains. She did physical therapy, but her rheumatoid arthritis symptoms just got worse. She took the prescribed medications, but nothing helped except steroids, which caused major side effects. Today, she has osteoporosis, and her stomach lining is destroyed.

Living With Rheumatoid Arthritis: Julie’s Nadir

Seven years after her rheumatoid arthritis diagnosis, the disease had become so aggressive that she was wheelchair-bound, unable to walk, go to school, or even feed or dress herself. Living with rheumatoid arthritis was beyond miserable. Tollinchi became depressed, so much so that she tried to end her life by overdosing on drugs at age 17. That was her lowest point — and one she says she'll never let herself reach again.

"I just got tired of being in pain, but I saw what that did to my family and how it destroyed them, and I said I would never be so selfish,” says Tollinchi. Then she decided to turn her life around. "I figured I had to find different avenues of letting go of my frustration and my anger and better ways of coping."

Living With Rheumatoid Arthritis: Finding Her Way Back

Tollinchi met with an orthopedic surgeon, who suggested knee replacement surgery as her only option to relieve her pain and get her out of her wheelchair. Her knees were stuck in a bent position, so walking was difficult and caused pain in her spine.

Tollinchi underwent surgical replacement of both knees and her left hip and then went through rehabilitation. "I had to learn how to walk all over again," she says. "It had been so long since I had walked normally that I really did not know how." After all that time in a wheelchair, Tollinchi could only describe being able to walk again as "heaven."

Other freedoms followed: showering and dressing herself and feeling like herself again.

Living With Rheumatoid Arthritis: Rehabilitating the Spirit

Tollinchi knew that she needed to find a way to stay positive, relieve stress, and heal her soul as her body began repairing itself from the damage of rheumatoid arthritis. She began writing in a journal regularly; on days when her hands are too swollen to write, she types her thoughts on her computer.

She also listens to a lot of music, which she says really boosts her mood. And she loves to drive. "When I feel like I can't take it any more, I'll get in my car and take a long drive." She also tries to exercise, walking and doing pool exercises.

"I learned how to cope just by dealing with the fact that this is life, and either you sit and cry all day, or you live your life as best you can with what you have," she says.

Having the support system of her family was invaluable. Her mom was with her every step of the way. Her dad took her to doctor's appointments and physical therapy visits. And her little brother "brushed my hair and fed me when I couldn't feed myself," she explains. Her sister is her exercise buddy. "They stayed really strong for me," she says.

Rheumatoid arthritis affects people of all ages, and rheumatoid arthritis symptoms can range from mild to completely disabling. When you say "rheumatoid arthritis," people "think of old people — they don't understand that it affects people on this Earth, and some people have had it since infancy," Tollinchi says.

She wishes that people weren’t judgmental — many couldn’t help but stare at the young girl in the wheelchair and wonder what was wrong with her — and that they were more educated about rheumatoid arthritis.

Living With Rheumatoid Arthritis: Treatment Then and Now

Tollinchi's experiences represent the frustration that is often part of living with rheumatoid arthritis symptoms. “Doctors didn't know what to do with me," she says, looking back. "I tried everything that came out — all the new experimental drugs, the injections, anything that could possibly help."

There were alternative treatments like acupuncture, herbal teas, deep tissue massages, and lying in a hyperbaric chamber. Most didn't work, although she says the acupuncture helped for a while.

Tollinchi has given herself injections of the biologic drug etanercept (Enbrel) and takes medications and vitamins each day. She tries to eat a healthful diet with a lot of protein, though she limits red meat, one of her favorite foods. She exercises regularly. She says, she'll just keep walking, swimming, driving, writing, and being grateful every day for everything she has and everything she is able to do.

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