Tag Archives: rheumatoid arthritis patient story

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.

对于一个19岁就被诊断患有骨关节炎的人,以及一个听到“我认为你的孩子患有幼年关节炎”这句话的母亲来说,影响是很大的。随着时间的推移,我的丈夫被诊断为强直性脊柱炎,我被诊断为类风湿关节炎。不幸的是,没有改变的是当地缺乏资源、信息和关怀。我们的儿子被误诊了,甚至做了一次不必要的紧急手术,在我们听到那句可怕的话之前,“幼年关节炎”,加上“我们需要把他送到300英里外的盐湖城去。”

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.

最后,几个好朋友让我去申请,因为他们最坏的反应就是拒绝。想象一下,当我接到一个电话和一封电子邮件,邀请我参加病人领导委员会的成立小组时,我有多惊讶和震惊!小小的我,没受过教育的校车司机从偏僻的地方来的我。

作为委员会的一员,我可以表达我作为一个母亲的声音,尤其是作为一个农村母亲,当涉及到我们需要什么和考虑什么时。我儿子受到的照顾与我们在盐湖城的朋友受到的照顾大不相同。我们有同样的医生,但途径不同。如果我们遇到问题,单程需要6个小时的车程,如果我们负担得起,还需要住酒店。

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.

我喜欢在PLC工作的时光。我和一些我可能不会遇到的人建立了友谊。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 applyHERE. 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 likeThe ChewandBurgers, 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 withrheumatoid 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 hasosteoarthritis. “’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-counternonsteroidal 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 adisease-modifying medication来解决这个问题。“我祖母去世的时候,她的身体已经瘫痪了。我知道这肯定是我未来可能会有的事情,但在(我这个年纪),我将继续尽我所能做好事情,仍然继续享受它,”他说。

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 Icould 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 ofFix It With Food, which will be released in November 2021.

食谱很简单,即使对我们这些不懂厨房的人来说也是如此。“里面有红薯和椰子炖菜,做起来真的很容易。在商店里很容易找到切成丁的红薯,其他食材也是如此。”“你把所有的东西都放进锅里,慢慢炖,味道会很好。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 sugaranddairy,” he says) or cheese every couple of weeks.

“我知道乳制品让我感觉很糟糕。话虽如此,冰淇淋让我感到非常开心,所以有时我决定要吃冰淇淋,但明天我就不会感觉很好,”他说。

“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

在疫情期间,他的饮食不像往常那样健康——“比正常情况下吃得更多,”他说。他拥有和/或管理着15家餐馆,这些餐馆不得不适应大流行病的限制和经济后果。大多数城市已经重新开放,但现在面临着防护装备短缺和冬季天气的挑战。

《美食频道》的拍摄对他来说也发生了巨大的变化。He already had given up intense competitions likeIron Chef但他是其他节目的常客,也有自己的一系列作品。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.”

作为一名厨师和餐厅老板,他通常会不停地走动。他说:“我很少有一天走不到2万步的。”随着疫情的爆发,他不再经常出现在餐馆里,但他和妻子今年早些时候收养的一只小狗正在帮助他弥补活动的不足。

“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.”

大流行的一个好处是他有更多的时间和妻子以及儿子和儿媳在一起,他们的孩子现在快两岁了。他说:“我不是很喜欢工作带来的旅行。”“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.

他建议,考虑一下你可以提前做好并冷冻的食物,比如砂锅菜,这样你就只需要在上桌前把它们加热就可以了。他说:“把蔬菜切好,准备高汤,提前做一些你能做的事情。”

If you’re super stressed, that doesn’t helpthings,” 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 fromFix It With FoodSlow-Roasted Salmon,Loaded Greens With Walnuts and Mushrooms, andPumpkin 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 readingDefying Gravity: Athlete and Dancer Reesa Partida Takes RA in Stride

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 withrheumatoid 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 addedfruitsandvegetablesto 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 readingLife Doesn’t Stop with RA: How Three People Keep Doing What They Love

Rheumatoid Arthritis Kayaking World Record

Woman with Rheumatoid Arthritis to Attempt World Record by Kayaking over 8,000 Miles

Traci Martin purchased her first kayak in 1999. She has always had a love for the outdoors and being physically active and enjoyed kayaking for fun. In 2009, not long after she began competitive kayak races, Traci started experiencing symptoms ofrheumatoid arthritis(RA) and was formally diagnosed with RA in 2010. Now, just seven years after her diagnosis, Traci will set off on a journey to kayak 8,600 miles and break the world record for longest solo kayak journey.
Continue readingWoman with Rheumatoid Arthritis to Attempt World Record by Kayaking over 8,000 Miles

Rheumatoid Arthritis Patient Story

From RA to Running a Marathon – Katelynd Park is Committed to Supporting the Fight for a Cure

Just over two years ago, at the age of 24, Katelynd Park was diagnosed with rheumatoid arthritis (RA). It was a devastating blow. She remembers thinking, how could someone so young and healthy be diagnosed with this debilitating disease? Katelynd has come a long way since her diagnosis. She is preparing to run the Bank of America Chicago Marathon, her first marathon, as part of theArthritis Foundation teamon October 8. She plans on showing others, and herself, that RA will not keep her from living her life.
Continue readingFrom RA to Running a Marathon – Katelynd Park is Committed to Supporting the Fight for a Cure

Seamus Mullen Rheumatoid Arthritis patient

Star Chef Seamus Mullen Sizzles Despite Rheumatoid Arthritis

Award-winning chef, cookbook author, owner of three New York restaurants and overseeing a fourth in London, Seamus Mullen, 40, seems unstoppable. But just a few years ago, he was battling pain from sometimes-debilitatingrheumatoid arthritis(RA) – a disease that threatened his career and his future.

WhenArthritis Today第一次和谢默斯交谈是在2010年,当时他是纽约市一家时髦的西班牙餐厅的行政主厨和合伙人。那是一个多云的春天下午,西莫在厨房里为晚高峰做准备,面临着切一只35磅重的羔羊的任务。

他提到那天他的手很疼——这是这位才华横溢、前途无量的厨师几年前被诊断患有风湿性关节炎的唯一迹象,除了有点跛。这对他来说是一个晴天霹雳,因为他没有确诊的家族病史,这让他的生活发生了翻天覆地的变化。但这也激发了他继续做自己热爱的事情的决心。

他以外科医生的精准和耐心,用两把刀——一把日本切肉刀和一把锯子——将羊肉分开,轻轻地把羊架、羊颈、羊肩等各部分放到一边。到午夜餐厅关门时,他已经工作了12个小时,不过他经常工作15个小时或更多。
Continue readingStar Chef Seamus Mullen Sizzles Despite Rheumatoid Arthritis