Category Archives: Rheumatoid Arthritis

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 .

#LiveYes & Fight for Better Access to Care

By Sarah Cloud

It’s tough to fight an unseen battle from an uneven playing field. My son was diagnosed 11 years ago with juvenile idiopathic arthritis (JIA), my husband four years ago with ankylosing spondylitis (AS), and myself a few years ago with rheumatoid arthritis (RA). We are active every day in changing the platform for families like ours to gain knowledge on how to access and receive care in non-urban areas.

In 2018, I decided to enroll in college. That was a massive step for this JIA mom and wife. I need to know how to fight for my family in a world that is very complicated medically. I have learned, through the years of my involvement with the Arthritis Foundation, just how lacking my access to care was. What I didn’t know until I started studying for a degree, in patient navigation and healthcare management, was how large the gap was in my health literacy. If I — a mom of a fantastic young adult with arthritis, and as the wife of a spouse with ankylosing spondylitis, and as an RA patient myself — was lacking health literacy, how would that look for the families I am trying to serve and empower?

What I learned through gaining these two degrees were a few key lessons.

  1. As the mom of a juvenile arthritis (JA) warrior, I knew more than some of my teachers. When teaching how to access drug therapies and service programs, my teachers had never thought of the strategies I learned from other JA moms. Never underestimate the collective brainpower of the JA Mom Tribe. If it can be done, they will find a way.
  2. When it comes to the complexities of insurance regulations, care plans, federal regulations and such, you really should get a degree for what we do every day to access our care. However, I also learned the right way to navigate the system and how to do that effectively and to speed things up when needed.
  3. The biggest key takeaway from this learning experience is that we can’t fight for what we don’t know. We need to educate ourselves and our peers on what it means to live life to the fullest with arthritis. We need to educate our communities on how to access care so we can live our best life.

If you have had experience in access to care that might help us educate others, please reach out and share your story with the Arthritis Foundation. I so often hear from others that their voice is not as powerful because they feel their collective experience isn’t as difficult. It’s still the voice of our collective experience. I want to hear from every family about how they fight access barriers. Is it a lack of infrastructure, lack of providers, a lack of resources for your community? What is your barrier to care, and what can we — as moms, wives, sisters, dads, brothers and fellow warriors — do to lift the voices of those who need help? How can we take power and change the conversation?

Join me and my family in the fight and take action to be an advocate for all of us with arthritis.

Gain a better understanding of your health care coverage and all the insurance terms. Visit the Arthritis Foundation’s RX for Access. This resource can help you understand how to choose the right coverage for your arthritis care needs and help you navigate paying for care and managing insurance claims.

 

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

Voices bloggers discuss joy

Voices: How Do You Cultivate Joy?

Gina Mara

Twitter @ginasabres

Gina Mara for VoicesJoy is something that we feel robbed of when dealing with everyday symptoms of rheumatoid arthritis (RA) and doctor appointments. When I first developed RA, I felt lonely and isolated. I couldn’t do things I used to do that brought me joy, especially during the holidays, like attend parties, drink or even be on my feet for long. Connecting with people on social media expanded my horizons about ways to find joy. Now, I send people positive messages to bring them joy, which also makes me happy. I’ve sent so many of these that now I receive them, too, when I least expect it. I’ve even gotten videos of people from across the country singing happy birthday to me. I am still participating in society, I just do it a little differently than others. I might not be somewhere in person, but when I send some simple words spreading joy, people know they are in my heart and mind.

Joy Ross

Facebook @Through the Eyes of Joy

YouTube @Joy Ross

Joy Ross for VoicesI have always been a joyful person, but my complete loss of eyesight as a result of juvenile arthritis [JA] and my two young daughters’ diagnoses with JA, I have learned that joy is a choice. As a Christian woman of faith, I allowed God to teach me how to truly walk by faith and not by sight or on pure emotions. God began showing me the true meaning of joy even when the circumstances looked hopeless. Every single day I make the choice to begin the day on a joyful note. My story of hope, perseverance and love is changing lives all over the world! If it were not for our challenges and my faith in Jesus, I wouldn’t have this beautiful perspective. I believe when you choose joy, you find strength, hope and purpose.

Lene Andersen

www.theseatedview.com  

Lene Anderson for VoicesGratitude is about slowing down enough to really notice joy, beauty, what’s funny and what’s good. It’s about experiences instead of things and remembering that I am a lucky woman. This is easier during the holidays, when reminders of love and all we have to be thankful for are all around, but I try to practice gratitude every day. Taking note of positive things and talking to positive people help. Going out with my camera to capture the beauty of the world always makes me feel better, and there’s nothing like sitting quietly with a purring cat on my lap to appreciate the present. Life isn’t about perfection or about stuff, but about love. Finding a way to express that – toward others, toward myself – is at the center of how I cultivate gratitude.

Related Resources:

 

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

bloggers arthritis communication

Voices: Have You Ever Hidden Your Arthritis?

Three influencers explain why they are outspoken about their rheumatoid arthritis (RA).

Thérèse HumphreyThérèse Humphrey

@TerezHumphrey; TerezFreemanHumphrey

Diagnosed in 1986, I kept my RA to myself because no one understood. There weren’t any treatments to stop the progression, and my doctor told me I could end up in a wheelchair. I was scared, and I wasn’t sure myself what was going on, so why burden others? Maybe if I didn’t talk about it, it would just go away.

Keeping it to myself only made me feel more isolated. In 2011, I started using social media to find others with RA. It is there I found my voice. By talking about the reality of living with RA, I finally felt validated, and more importantly, I was giving others – especially the newly diagnosed – encouragement and hope. It took me a long time to realize that being open to others is vital to teaching them the reality and impact of RA. Today, I am a passionate patient advocate and want to educate everyone who’s willing to care and listen about RA.

Continue reading Voices: Have You Ever Hidden Your Arthritis?

sharae mansfield

Benched by RA, Pro Hoops Player ShaRae Mansfield Still Shoots to Win

ShaRae Mansfield vividly remembers getting the call 17 years ago saying the Houston Comets had drafted her to play in the Women’s National Basketball Association (WNBA). For the Western Kentucky University (WKU) student, the chance to play professional basketball was a dream come true.

But her WNBA career was short-lived. While she had mad skills on the court, excelling at both points and rebounds, she also had frequent pain in her shoulders, hips and especially her left knee, made worse by a torn anterior cruciate ligament (ACL). ShaRae had undergone six surgeries on it, but her continued knee problems led the Comets to release her before she completed even her first season.

Continue reading Benched by RA, Pro Hoops Player ShaRae Mansfield Still Shoots to Win

rheumatoid arthritis patient stories

Life Doesn’t Stop with RA: How Three People Keep Doing What They Love

Mark Rucker: “Adopt a healthier lifestyle”

mark ruckerWhen Mark Rucker was diagnosed in 2015 with rheumatoid arthritis (RA) at 44, he had mixed emotions. He was glad to know what had been causing the often unbearable pain in his hands, feet, jaw and toes for the past year. But, he recalls, “I always thought RA was a disease that only affected elderly women, not someone who was in the midst of training for their second Ironman competition.”

A real estate attorney in Lexington, Kentucky, Mark in the past had been a self-described “385-pound couch potato.” Being told in 2011 that he was too big to ride on the rollercoaster with his kids spurred him to change his lifestyle. He traded in sugary sodas for water, cut processed sugar and added fruits and vegetables to his diet, and began to walk a mile each day during his lunch hour. He lost 135 pounds, and those lifestyle changes led him in 2013 to complete his first Ironman – a 2.4-mile swim, 112-mile bike ride and a 26.2-mile marathon.

Continue reading Life Doesn’t Stop with RA: How Three People Keep Doing What They Love