Tag Archives: RA

From Patient to Patient Leader: Every Voice Counts

We are spotlighting two people this month who are sharing their experiences as members of the Arthritis Foundation’s Patient Leadership Council (PLC). Learn how to apply to join the PLC at the end of this post.

By Sarah Cloud | Sept. 1, 2021

An arthritis diagnosis can be one of surprise and acceptance or one of absolute fear. It all depends on what words precede the word “arthritis” and how your health care provider may explain and support your diagnosis.

As someone who was diagnosed at the age of 19 with osteoarthritis and then as a mom who heard the phrase, “I think your child has juvenile arthritis,” the impact varied greatly. As time passed, my husband was diagnosed with ankylosing spondylitis and I with rheumatoid arthritis. Unfortunately, what didn’t change was the lack of local resources, information and care. Our son was misdiagnosed and even had an unnecessary emergency surgery before we heard that horrid phrase, “juvenile arthritis,” combined with “We need to send him north to Salt Lake City, 300 miles away.”

The doctors in our rural area hadn’t seen a patient like our son. I didn’t know another parent on this journey for over two years. In the years that followed I found an amazing group of moms on Facebook who helped us along our journey, and we became heavily involved in the Arthritis Foundation.

One night, I was reading a newsletter and there was a link for a newly forming Patient Leadership Council (PLC). The Foundation was looking for people to apply, but I almost didn’t. I had talked myself out of it. Why? Who wants to hear from a school bus driver in the middle of nowhere who has no letters behind her name? I didn’t have any formal education and no connections to the Foundation, as there was no local Foundation office. We joked at national events and online that we lived in “No Man’s Land.” We lived in Hurricane, Utah, located 16 miles from Arizona and about 40 miles to Nevada. It’s often known as “Land of the National Parks,” but not much else.

Eventually, a few good friends told me to apply because the worst they could say was no. Imagine my surprise and shock when I received a call and an email inviting me to sit on the Inaugural panel of the Patient Leadership Council — me! Little ole me, the uneducated school bus driver from the middle of nowhere me.

Being a member of the PLC has allowed me to express my voice as a mom, but especially as a rural mom, when it came to what we needed and what was considered. The care my son received was so vastly different from the care our friends in Salt Lake City received. We had the same doctors but different access. If we had a problem, it required a six-hour drive each way and a hotel room if we could afford it.

Most the time we couldn’t afford a new set of tires for the car to make the trip, let alone to stay the night. This meant that many times our son had to receive care once every six months or by phone. If we had problems, I had to email pictures to the doctors in Salt Lake City, then they would tell us what to check for and what to do. Think: pre-telemedicine. I couldn’t just schedule him for clinic. Scheduling for clinic meant a day off work, having to find a substitute, arranging transportation, gas, meals and entertainment for a then-preteen who hated car trips.

To be able to voice what was different from our perspective gave voice for every rural family the foundation serves. It allowed us as patients to say: “Nothing about us without us.” We have been asked to weigh in on many things, from the direction of events to targeted market research studies. We never know what will come our way to study and voice feedback on.

I have loved my time on the PLC. I have formed friendships with people I probably wouldn’t have met. With these friendships and support and encouragement, this mom went back and earned a college degree in patient access and we have since moved to rural southwest Missouri, where, Ironically, we face many of the same challenges with lack of resources and care, but this time I know I have a voice and resources to change that.

If you’re like me and don’t think your little voice matters, you’re wrong. Your experiences and voice are needed to shine light on what we as a collective community can do to change the access and outcomes for people everywhere.

If you’re interested in joining us, apply. The worst they can say is no.

Interested in applying to join the Patient Leadership Council (PLC)? Applications are currently open! You can apply HERE. Deadline for application submissions is 11:59 p.m. Oct. 15, 2021. If you are selected for next steps, we will notify you by early to mid-November. Thank you for your interest! And spread the word! 

Chef Michael Symon’s Recipe for Easing Arthritis Pain

On cooking shows like The Chew and Burgers, Brew and Que, the charismatic Chef Michael Symon, with his signature bald head and contagious smile, whips up mouth-watering dishes with what seems like boundless energy and enthusiasm. What’s not so apparent are his painful hands, aching knees and ankles, and lurking fatigue.

Symon, 51, was diagnosed in his 20s with rheumatoid arthritis (RA) and discoid lupus, a form of lupus that primarily affects the skin, but also the joints.

“Literally one morning I woke up with these two enormous butterfly splotches under my eyes,” Symon recalls. At first, he and his dermatologist focused on managing the lupus by staying out of the sun. But when his joint symptoms persisted, his dermatologist sent him to a rheumatologist, who diagnosed RA.

Growing (Older) Pains

Reprinted from Fix it With Food. Copyright © 2019 by Michael Symon Photographs copyright © 2019 by Ed Anderson. Published by Clarkson Potter, an imprint of Penguin Random House, LLC

Symon’s arthritis pain and stiffness affects his ankles, knees, elbows, wrists, and hands. Some of his joint issues stem from broken ankles and reconstructive elbow surgery from wrestling in high school and college – the reason he insisted his own son choose a different sport, he says with a laugh. The pain in his hands is worsened by “30-plus years of cooking, holding a knife butchering – doing a lot of that in coolers, 35-degree temperatures,” he says. Now that he has others do the precise cutting needed in the restaurants, he’s more than happy to give his hands a break at home by buying precut produce and using a food processor.

His primary care doctor suspects he also has osteoarthritis. “’There’ll be a point where you’ll have to get both knees [replaced], and your hips aren’t great either,’” he told Symon.

As Symon got older, he found himself taking increasing amounts of over-the-counter nonsteroidal anti-inflammatory drugs (NSAIDs). “When you’re younger, you tend to grunt through some pains more. As I got older, I don’t know if the aches and pains increased or my pain tolerance decreased – one of the two [happened],” he says.

His Personalized Pain Therapy

Symon, whose grandmother had RA, knows the disease will continue to cause damage if he doesn’t take a disease-modifying medication to address it. “My grandmother, by the time she passed, it was crippling. I understand that certainly is something the future may have for me, but at [my age], I’m going to continue to do things as best as I can and still continue to enjoy it,” he says.

Instead — and counter to most medical professionals’ advice — he has leveraged his own professional knowledge to try to manage his overall health and arthritis through diet – with mixed results. He tried a vegan diet (he wasn’t a fan, although his wife is vegetarian) to try to lower the tendency to high cholesterol he inherited, but it didn’t budge his numbers. He ended up taking a cholesterol-lowering medication.

But for his RA, he focused on reducing the foods that cause his joint pain to escalate. His hands are a little “crooked,” he says, but he can generally manage the pain.

Reprinted from Fix it With Food. Copyright © 2019 by Michael Symon Photographs copyright © 2019 by Ed Anderson. Published by Clarkson Potter, an imprint of Penguin Random House, LLC

“I’ve thought about taking something for the RA, but there’s a point [where] I’ve been able to control the pain, I’ve found, with diet. So – right, wrong or indifferent – my choice would always be to take less medication,” he says. “I started playing around with my diet to see if I  could reduce the aches and inflammation through diet. That’s what led to me trying to figure out what my own personal triggers were that affect how I feel.”

It also led to a new cookbook he co-authored, Fix It With Food: More Than 123 Recipes to Address Autoimmune Issues and Inflammation, released in late 2019. He is currently working on another volume of Fix It With Food, which will be released in November 2021.

The recipes are simple, even for those of us who are not savvy in the kitchen. “There’s a sweet potato and coconut stew in there that is really easy to make. Sweet potatoes are easy to find diced in the store and so are the rest of the ingredients,” he says. “You put everything in a pot and let it simmer and it tastes great. It’s probably my favorite recipe in the book from a flavor standpoint, and it’s not a lot of work to get a meal that feels special.”

Modifying his diet has eliminated about 80% of his joint pain, but “it’s not a cure, it’s maintenance.” And it only helps if he sticks with it.

Unfortunately for Symon, who has a particular love for cheeses and other dairy products, he discovered that what triggers his arthritis symptoms most are sugar and dairy. So now, instead of eating ice cream three times a week, he’ll indulge in ice cream (“a double whammy because it’s sugar and dairy,” he says) or cheese every couple of weeks.

“I’ve learned that dairy makes me feel pretty [bad]. That being said, ice cream makes me feel pretty happy, so there are times where I make a decision [that] I’m going to have the ice cream, and tomorrow I’m just not going to feel great,” he says.

“If I do the right things, I feel great on a daily basis. In the early years of me having [arthritis pain], I’d get aggravated by it and try to push through,” he says. “Now I understand I have to live a certain way to feel better. Instead of getting frustrated, I just get back on track now.”

Adjusting to the Pandemic

During the pandemic, he hasn’t been eating as healthfully as usual — “more stress eating than normal,” he says. He owns and/or manages 15 restaurants, which have had to adapt to the pandemic strictures and economic consequences. The majority are back open but are now facing shortages of protective gear and challenges of winter weather.

Filming for Food Network has also changed dramatically for him. He already had given up intense competitions like Iron Chef, but he’s a regular on other shows and has his own string of productions as well. He shot the latest, Symon’s Dinners, with help from his culinary director and social media manager on a cell phone at his home. “In 25 years of doing TV, that was a first,” he says, laughing. “The shows actually came out really good.”

As a chef and restaurateur, he’s typically constantly on his feet and moving. “There’s rarely a day that I take less than 20,000 steps,” he says. With the pandemic, he isn’t on site in the restaurants as much, but a puppy he and his wife adopted earlier this year is helping him make up any shortage of activity.

“We’ve always had mastiffs and those kinds of dogs that you walk them to the end of the driveway and they’re exhausted. This is our first terrier. I walk him two or three times a day and he’s never tired,” Symon says, so he still clocks more than 20,000 steps a day. “I try to play golf twice a week just to keep my mind straight,” he adds, and “I do a lot of stretching and a lot of meditation and breathing. Once you realize it makes you feel better, you just get in the routine.”

A benefit of the pandemic is the extra time with his wife and his son and daughter-in-law, whose baby is nearly 2 now. “I’m not a huge fan of all the travel that sometimes work brings,” he says. “Our granddaughter only lives about five minutes away, so I get to see her several times a week and spend time with her, which is great.”—JILL TYRER

Chef Symon’s Holiday Cooking Advice

Reprinted from Fix it With Food. Copyright © 2019 by Michael Symon Photographs copyright © 2019 by Ed Anderson. Published by Clarkson Potter, an imprint of Penguin Random House, LLC

Plan ahead and start preparing your holiday meal a week in advance. “There are a lot of things you can do five days in advance so you’re not on your feet 10, 12 straight hours or whatever trying to get it all done the day before and the day of,” he says.

Consider what you can make ahead and freeze, like casseroles, he suggests, so you’ll just have to warm them up before serving. “Get vegetables cut, make your stock, do the kinds of things you can do in advance,” he says.

If you’re super stressed, that doesn’t help things,” he says. “Really, at the end of the day, one thing COVID’s taught me is to enjoy your family, so the last thing you want on a holiday is to be stressed out and achy and in pain and not enjoy the people around you.”

Check out these holiday-appropriate dishes Symon and his culinary director recommend from Fix It With FoodSlow-Roasted Salmon, Loaded Greens With Walnuts and Mushrooms , and Pumpkin Pie .

Defying Gravity: Athlete and Dancer Reesa Partida Takes RA in Stride

Reesa Partida grasps and loops a dangling swath of fabric, places her foot against it and lithely climbs up before swooping into an aerobatic dance of twists, splits and perfectly pointed toes – a demonstration of grace and strength. “I think I was inspired by Cirque du Soleil,” Reesa says with a laugh. “I thought it looked like a lot of fun, so I started by taking a class three and a half years ago.” Continue reading Defying Gravity: Athlete and Dancer Reesa Partida Takes RA in Stride

Alayna Travaglione header

Alayna Travaglione: Her Dreams of Studying Abroad Came True

Studying abroad can be an exciting but nerve-wracking experience. The comfort zones you are so used to back home become non-existent as you make your way through an unknown country meeting new people and immersing yourself into different cultures. For a college student with Rheumatoid Arthritis, there are a few extra challenges I have to face and while doing so, I often question if choosing to travel for a semester was the best option for me. As someone who has Arthritis in all of their joints and still undergoing surgical procedures, the idea of being in an unfamiliar place away from my family and doctors was downright scary. What if my joints got worse or something happened with my medications? What if I decide midway I can’t put my body through this anymore? These questions often swirl around in my head as the activities become difficult or the field trips become too strenuous that I am left lying in bed the next day. When I do ask myself these questions though, I reflect on why I chose to study abroad in the first place. Continue reading Alayna Travaglione: Her Dreams of Studying Abroad Came True

liz morasso patient story

Liz Morasso: Support Networks Helped Her Adjust to a New Life

As part of our vetting process for Arthritis by the Numbers – a collection of verified arthritis facts and figures – we invited patients to comment on the disease section that most affected their lives. After all, they are the experts on how the disease changes and challenges everyday living.

Meet Liz Morasso, a licensed clinical social worker at UCLA’s department of radiation oncology who has volunteered for the Arthritis Foundation since 2002. That’s when, at age 16, she was diagnosed with systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA). Over the years, she has immersed herself in leadership roles with the Foundation and speaks nationwide to inspire patients living with chronic illness.

Following, in her own words, is Liz’s story about living with these conditions and how the statistics she reviewed in Arthritis by the Numbers relate to her personally. Continue reading Liz Morasso: Support Networks Helped Her Adjust to a New Life

eileen schneider patient story

Patient Partner’s Words of Wisdom About Living With RA

As part of our vetting process for Arthritis by the Numbers – a collection of verified arthritis facts and figures – we invited patients to comment on the disease section that most affected their lives. After all, they are the experts on how the disease changes and challenges everyday living.

Meet Eileen Schneider, who is a registered nurse and has a passion for patient advocacy. Following, in her own words, is her story about living with rheumatoid arthritis (RA) and how the statistics she reviewed in Arthritis by the Numbers relate to her personally.

Continue reading Patient Partner’s Words of Wisdom About Living With RA

arthritis foundation autoshow

Getting Rid of Arthur, the Uninvited Guest

When Kevin Gadd was born, roughly 51 years ago, an unexpected and unwelcomed guest joined his family.

“My mom was diagnosed with rheumatoid arthritis (RA) in her hands just after I was born,” explained Kevin. “We called it Arthur, like Arthur-itis. We were always mad at Arthur because he brought pain to my mom and made it difficult for her to do the things she loved. Arthur was a bad dude.”

Continue reading Getting Rid of Arthur, the Uninvited Guest

Arthritis Today Bloggers

Voices: Are You a Self-Care Slacker?

Q. Are you a slacker when it comes to self-care?

Taking care of yourself is so important, but who hasn’t dealt with the self-care burnout that comes with having a chronic condition?

For the first in a new series featuring some of the leading social media voices on life with arthritis, we asked these bloggers about their struggles with self-care.

Continue reading Voices: Are You a Self-Care Slacker?