Category Archives: Stories of Yes

Survive & Thrive: Together in Isolation

It’s game on for Rob Gronkowski and Matt Iseman on the Live Yes! With Arthritis Podcast.

This was not your typical discussion about chronic pain and arthritis. There was laughing. There were singing and dancing. There was even juggling. It was just what we needed to cut through the isolation of the new coronavirus world. Former pro football player Rob Gronkowski – known by fans as “Gronk” – teamed up with Matt Iseman, host of American Ninja Warrior and a longtime friend of the Arthritis Foundation who has rheumatoid arthritis, to share their stories and some laughs on the Live Yes! With Arthritis Podcast. Together they will be hosting COVID-19 Celebrity Challenge – Survive & Thrive: Together in Isolation, presented by CBDMEDIC™ to benefit the Arthritis Foundation, on Facebook Live.

Continue reading Survive & Thrive: Together in Isolation

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Live Yes! With Arthritis Podcast-Episode 2-Mindfulness

Living with arthritis can lead to major stress. Which can lead to more pain! It’s a vicious cycle that can leave you mentally and physically exhausted. Research suggests that mindfulness practices can help people living with chronic pain. But the idea of even practicing mindfulness and meditation to break that pain chain can be scary.

Continue reading Live Yes! With Arthritis Podcast-Episode 2-Mindfulness

Greyson Chess Keeps Plugging Away

This 10-year-old boy from Ohio won’t let arthritis stop him from having fun, because he knows he can handle it.

Even when his juvenile arthritis is acting up and his joints hurt, Greyson Chess just keeps plugging away and rarely complains about his pain. An avid soccer player and skier, this active 10-year-old also enjoys lacrosse, basketball, snowboarding and going to the beach. During spring break earlier this year, he got to travel with his parents and two sisters, Ava and Piper, to Costa Rica. Continue reading Greyson Chess Keeps Plugging Away

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54 Million Reasons to Give on #GivingTuesday

Picture this: You’re walking through your local CVS Health store. Your hips and toes have already started burning. All you want to do is get back into your car to sit, but even that’s a challenge. As you make your way to the pain aisle, you want something — anything — to make it go away. You put a hot and cold compress into your cart. But bending down to lift the Epsom salt is going to be a challenge. Should you ask the stranger shopping next to you for help?

Continue reading 54 Million Reasons to Give on #GivingTuesday

Sisters by Birth, Friends by Choice

Lauren McAllister, Kristen’s big sister, found her role and urges other JA siblings to do the same.

“We’re lucky to be sisters, but we choose to be best friends,” says Lauren McAllister of her relationship with her sister, Kristen McAllister.

(L-R) Kristen & Lauren

Kristen began a long and painful journey with juvenile idiopathic arthritis 15 years ago, when she was 10 years old and Lauren was 12. It hasn’t been an easy road.

“It is devastating to watch someone you love have to fight a battle that doesn’t have a cure,” says Lauren. “Where the medications that are supposed to help don’t always help. To have the doctors who are supposed to ‘fix you’ not know what to do. It’s a feeling of helplessness. Not only can I not help her, but neither can the physicians who are supposed to be the ‘fixers.’”

Previously an active child, Kristen had to give up dancing, cheerleading and gymnastics — activities that she had grown up participating in with Lauren.

“Growing up, she would follow in my footsteps and do the same activities I did,” says Lauren. “We started dance, then gymnastics, which we got to do together. It was neat to have those experiences together.”

But arthritis changed their lives. Kristen could no longer follow in Lauren’s footsteps.

“I didn’t know how to walk her through it. I didn’t know what the right words were, and I couldn’t take the pain away,” Lauren says.

Kristen had to choose her own path in this challenging landscape, with Lauren by her side.

“She is unstoppable,” says Lauren. “She has made up in her mind that she’s not going to let this hold her back from doing the things she loves and wants to do. As a family, we’ve backed her 100%. We make it work. She will get out of her wheelchair and crawl upstairs in a restaurant, and we’ll bring the wheelchair around so she can get right back in it.”

(L-R) Lauren & Kristen take a stroll

Lauren goes on: “Something I really admire about her is that she has every reason under the sun to take herself out of situations, not partake in activities or go certain places because it’s harder or inconvenient. But she won’t allow herself to live that way. We’ve been so fortunate with the support of our friends and extended family. We’ve all just wanted her to experience the life a 25-year-old should experience.”

While Lauren and Kristen have chosen to be sisters, they’ve also chosen to take a specific outlook on life. “We choose joy,” says Lauren.

“It’s harder to do on some days than others, and it may be weeks or months later before you find it. But in every situation, we try to find the joy in it. We’ve been through some pretty dark times. But we’ve chosen joy. If you keep looking for it, you’ll eventually find it.”

Arthritis is a life-altering disease for 54 million Americans like Kristen and Lauren. You can help conquer it on Giving Tuesday. Your generous donation fuels life-changing research and resources right away.

Make a Donation. Change the future of arthritis.

Live Yes! With Arthritis Podcast-Episode 1

Everybody is talking about CBD these days. We are, too! Whether it’s health and beauty products, or foods, or even your local coffee shop, it seems everyone is getting in on the act. People take it for everything from anxiety and depression to pain and sleeplessness, even migraines. A growing number of people with all types of arthritis — from osteoarthritis to rheumatoid and psoriatic arthritis or fibromyalgia — say they’ve tried it or plan to. Continue reading Live Yes! With Arthritis Podcast-Episode 1

Dr. Rowland W. (Bing) Chang Becomes an ACR Master

On Saturday, Nov. 9, 2019, Rowland W. (Bing) Chang, MD, MPH, became one of 23 American College of Rheumatology (ACR) doctors to become an ACR Master. The designation of ACR Master is one of the highest honors ACR bestows. It is given to members, age 65 or older, who have made outstanding contributions to ACR and to the field of rheumatology through scholarly achievement and/or service to their patients, students and profession.

An active volunteer for the Arthritis Foundation, Dr. Chang has served on the national board of directors since 2006 (including board chair from 2016-2018). He is a past recipient of the Foundation’s highest tribute to volunteers, the Charles B. Harding Award for Distinguished Service.

Dr. Chang is noted for his clinical, epidemiologic and health services research focused on the outcomes of rehabilitation and surgical treatments for patients with arthritis. He is also interested in identifying the causes of functional limitations in clinical and community populations with arthritis.

As part of this interest, he worked with a research team that was among the first to identify sedentary behavior and the lack of physical activity as important risk factors for functional decline and the onset of disability in patients with knee osteoarthritis (OA). These studies have led to recommendations for scalable healthy physical activity and dietary interventions for those with or at risk of knee OA.

Dr. Chang started his work at Northwestern University Feinberg School of Medicine in Chicago in 1982, where he is currently a professor of preventive medicine, medicine and physical medicine and rehabilitation. Additionally, he leads doctors, nurse practitioners, physical and occupational therapists, clinical psychologists, social workers and other rehabilitation professionals in the care of arthritis patients at his clinical practice at the Shirley Ryan Ability Lab (formerly the Rehabilitation Institute of Chicago).

Dr. Chang earned his medical degree at Tufts University School of Medicine and his graduate public health education (MPH) at the Harvard School of Public Health. He completed a residency program at the Mount Auburn Hospital in Cambridge, Massachusetts, followed by rheumatology training at the Royal Postgraduate Medical School (Hammersmith Hospital) and a clinical/research rheumatology fellowship at the Brigham & Women’s Hospital.

New Mom Says Treat RA Like a Friend

A Miami native, Stephanie Aleite is a new mom who feels that her suffering from arthritis isn’t in vain. Instead, she shares her experience with others in hopes they will live a better life.

Stephanie was very surprised when she first heard she had juvenile arthritis as a young child. Until her late teens, she didn’t know she’d been diagnosed with JA at age 5, which started with a deformed finger on one hand and soon spread to her whole body.

She quickly started treatment that controlled her disease. “I was fortunate to respond so well to treatment that my disease went into remission for most of my teenage years. My parents thought my remission would last my whole life, so they had no reason to tell me about a disease they thought was part of my past.”

But Stephanie’s RA came roaring back with a vengeance at age 17. “My mom had to tell me, ‘Well, you had a little bit of arthritis when you were little.’ So I had grown up with the symptoms and pains of the disease, including several years of remission, yet never had a name for it.”

The Challenges of RA and Being a New Mom

Stephanie knows all too well that most people don’t realize how intense and complicated arthritis is. But she’s learned to accept their misperceptions. “It’s OK that they don’t fully understand. I don’t even understand it myself sometimes,” she admits. “The disease is so bad that it’s kind of unbelievable. The only way I can really describe something so complex is to explain that my immune system is attacking my body.”

A big obstacle Stephanie faces today is having trouble sleeping. “That’s the most basic kind of human need that RA gets in the middle of,” she says. “It’s hard to sleep when you can’t get comfortable because you’re in pain. Sometimes my back hurts so bad that I wish somebody would wring out my spine like a washcloth.” Stephanie says it’s hard to turn doorknobs and pick up a heavy pot of boiling water for pasta.

Her RA is especially tough around the holidays. “It’s stressful for anyone, even without arthritis. I love to cook, and usually people are pretty understanding that I’m not able to do everything or cook an entire feast for 20 people.”

Something harder for some to understand is that she can’t make it to all the holiday parties. A friend gave her sound advice to feel less overwhelmed: Just disappear quietly into another room when you need a short break. “You don’t have to be in it the whole time. I tried so hard to be all-in, all-perfect, all-visible. But it’s OK to show people your vulnerability. Take 15 minutes by yourself and relax a bit if you need to.”

Taking care of her son, Santiago, who just turned 1, can also be challenging. Carrying him, getting him into and out of his car seat or putting him into his stroller or a shopping cart can trigger pain. She tries to run errands on her husband’s day off so he can help.

No Longer on the Sidelines

Stephanie says having good communication with your health care team is vital. “I’m thankful to have an open, honest relationship with my doctor. Finding a doctor who views our relationship as a partnership has been pivotal. My experience has changed me from someone who sat on the sidelines in my fight against RA, to the girl in the ring, ready to kick RA in the teeth.”

Stephanie makes time to connect with others who also struggle with arthritis, including being a patient advocate and blogger. Before she became a mother, Stephanie led a local Live Yes! Connect Group, bringing together doctors and patients to talk about treatment goals and tools to bridge the gap between doctor visits.

Stephanie says all the Arthritis Foundation’s grassroots advocacy efforts comfort her. “The Arthritis Foundation is so committed to fighting for our rights in Washington and in states around the country. I don’t have time or don’t fully understand all the laws. Knowing they’ve got my back so I can spend time with my son is a big enough reason to donate.”

Though arthritis can be distracting, Stephanie finds plenty of other things to occupy her mind. Her interests include crocheting, gardening, writing and a big favorite: cooking. “Arthritis can prevent me from doing these things, but it’s not everything I think about or all my life revolves around.”

Stephanie shared these words of wisdom in one of her blogs: “Someone once told me that RA is like a friend who will be by your side for the rest of your life, and how I treat that friend determines how that friend treats me. So, I’ve learned I have to care for it, respect it and—occasionally—entertain it.”

Not Even Arthritis Can Slow Down This Female NASCAR Driver

Natalie Decker holds a fundraiser to benefit others with arthritis.

At the tender age of 5, Natalie Decker knew what she wanted to be when she grew up. Raised in Wisconsin, Natalie’s father, Chuck, ran a motor sports track that hosted the World Championship Snowmobile Derby. Natalie wasn’t much into snowmobiling, but she was mesmerized by go-karts and told her dad that her big dream was to race in NASCAR (National Association for Stock Car Auto Racing).

Today, at 22 and living in North Carolina, Natalie has made her dream come true, becoming one of the top young drivers in the NASCAR scene. Along the way, she has broken records and continues climbing the racing ladder as she aims to achieve more victories and accolades on short tracks across the country. Last year, she was the highest finishing female on a superspeedway in Automobile Racing Club of America competition, taking fifth place. Her biggest dream is making the Cup Series, NASCAR’s top racing category.

What makes her victories even more impressive is that Natalie grew up with childhood arthritis, which she has battled since birth. After keeping quiet about her illness most of her life, afraid of being perceived as weak, she recently revealed her illness to the world and announced on her social media channels the fundraiser she’s doing to support the Arthritis Foundation. She’ll announce it again in person to her fans at the Homestead Miami-Speedway’s NASCAR season finale on Nov. 15.

Fans were able to buy a spot on the hood of Natalie’s No. 54 DGR-Crosley Toyota Tundra. Donations are still welcome, and those who donate will still receive swag that’s exclusive to the fundraiser. The hood will be auctioned off after the race, along with Natalie’s race-worn Fyshe Fire Suit, Arai helmet, racing boots, gloves and a special jacket. All proceeds from the fundraiser will help raise awareness and funds for the Arthritis Foundation’s mission, fueling research for a cure as well as resources and support for those of all ages who struggle with the disease, including life-changing juvenile arthritis camps nationwide.

We recently caught up with Natalie before the big upcoming race.

Q: What was it like growing up with arthritis?

A: I was born with it and was diagnosed at age 2. I had problems with my jaw and other joints. I took a high dosage of a chemo drug once a week for over 10 years. It made me very tired and gave me headaches. I always felt sick and nauseous. When I was young, my arms were locked at a 45-degree angle, and it took a while to straighten them all the way. My knees were always so swollen. At about 12 years old, I went into remission and got off the med.

Q: Were you unable to do certain things?

A: My pediatrician told me he couldn’t believe all I could do as a child. I was doing all these sports, whether it was dance, hockey, soccer, and I was just getting into go-kart racing at age 9. He told me, “I don’t know how you’re doing these things. It should be physically impossible.”

Q: Did you have any past involvement with the Arthritis Foundation?

A: I really wish I did, but I didn’t. I don’t think my parents knew about the Arthritis Foundation and the benefits they provide, and we were always so busy. Arthritis Foundation camps for kids with JA are so cool. Being involved in those camps would have helped me so much. Through this current fundraiser, we want to help more kids be part of that.

Q: What’s most thrilling about racing?

A: Growing up, my family and extended family would travel all over on the weekends to racing events. I loved it. From my first go-kart, I wanted to work really hard to get into NASCAR. It’s been a lot of work but so much fun. Everyone you meet becomes family. Racing is still a male-dominated sport, so it’s really cool to see how that’s changing. It’s no longer weird to be a girl in the racing arena.

Q: Isn’t racing dangerous?

A: With all the NASCAR rules they have and the gear I wear, I feel that racing is really safer than driving on the highway.

Q: What do you say to other girls, including those with a chronic disease like arthritis, to encourage them?

A: Whoever you are and whatever you want to do, do it because you want to and love it. Whatever you put your mind to, you can absolutely do it. Get a great support system. You need to have others supporting you. When you fall on your face, you can pick yourself up with the support of others. It’s so inspiring to tell other girls that they can do anything.

Q: Have you gotten respect in your field?

A: Yes, and I’ve earned it. The easiest way to earn respect in racing is to race your race, race clean and do well. Win races the right way. Be the best you can be and be nice. Be yourself, male or female, and respect others.

Q: You recently flew with the Thunderbirds. What was that like?

A: That was absolutely amazing. I never thought in a million years I would ever do that. I ran into a Thunderbird crew in Daytona, then we connected again in Vegas, and I got to fly with them, which was another dream come true.

Q: Does arthritis affect you today?

A: I came out of remission not long ago. The pain and stiffness now are 10 times worse than when I was younger. I have to take care of myself. When I need to sit down or take a break, I do. Even when you’re racing in your car, for hours at a time in one position, that can be really painful. I have to be really prepared, recover fast and know what I can and can’t do in the gym. This past year, I went to the eye doctor and was told my eyes are drier than someone who’s 80 years old. I’ve gotten a med for that because having dry eyes is really painful. I want to start infusions, like a lot of patients with rheumatoid arthritis, and will start that soon.

Q: Tell us about your arthritis fundraiser.

A: We want to help more kids go to camp and advance arthritis research. I’m so thankful the Arthritis Foundation gives people with arthritis the resources, local programs and support they need, so they can chase their dreams, like becoming a NASCAR driver, and live a full life. I was very nervous about sharing my story for a long time. But I’m so happy I’m finally sharing it to help and be an inspiration to others. Though I’ve learned to work through the condition’s hardships, it pains me to know what these kids go through every day. We need the public’s help, and together we can change lives!