Tag Archives: stories of yes

From Patient to Patient Leader: Every Voice Counts

这个月,我们将重点介绍两位关节炎基金会患者领导委员会(PLC)成员分享他们的经历。在本文末尾了解如何申请加入PLC。

By Sarah Cloud | Sept. 1, 2021

关节炎的诊断可能是一种惊讶和接受,也可能是一种绝对的恐惧。这完全取决于“关节炎”这个词之前的词汇,以及你的医疗服务提供者可能会如何解释和支持你的诊断。

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.

一天晚上,我在读一份时事通讯,上面有一个新成立的病人领导委员会(PLC)的链接。基金会在找人申请,但我差点没申请。我说服自己放弃了。为什么?谁想听一个在荒无人烟的地方,名字后面连字母都没有的校车司机说话?我没有受过任何正规教育,也没有与基金会的联系,因为当地没有基金会办公室。我们在国家活动和网上开玩笑说,我们住在“无人区”。我们住在犹他州的飓风区,距离亚利桑那州16英里,内华达40英里。它通常被称为“国家公园之地”,但其他没什么。

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.

有兴趣申请加入病人领导委员会(PLC)?应用程序目前正在打开!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.

增长(老)疼痛

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 medicationto 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 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该片将于2021年11月上映。

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.”

通过调整饮食,他的关节疼痛减轻了约80%,但“这不是治愈,而是维持。”只有他坚持下去才会有帮助。

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, 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.”

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。”“我们的孙女住的地方离这里只有五分钟的路程,所以我每周能见到她几次,和她在一起,这很好。”—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 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.

Shane Cox_Stories of Yes

No One Should Be in Debilitating Pain, Especially at 10 Years Old

Support the Arthritis Foundation and the54 million Americanswith arthritis.

Meet Shane Cox

当你见到来自加州佩塔卢马的谢恩·考克斯时,他的安静、冷静的举止几乎暴露不出这个年轻人的真面目。But whether he is speaking as an honoree at his localJingle Bell Runor at theCalifornia Coast Classic, it’s easy to realize he has experienced more in his young life than most his age.Continue readingNo One Should Be in Debilitating Pain, Especially at 10 Years Old

From Coast to Coast: A Birthday Challenge Leads to Awareness, Funds for Arthritis

Tom Baltes arthritisA love of cycling seems to run in Tom Baltes’ family. Unfortunately, arthritis does, too.

As one of five children, Tom has watched as two of his siblings have been diagnosedrheumatoid arthritis (RA)还有一个做过两次髋关节置换手术。Tom hasosteoarthritis (OA).

“I was first diagnosed with OA in my left knee and lower spine when I retired from the military,” recalls Tom. “I’m a lucky man in that I have not been particularly bothered by arthritis, but my siblings have really struggled with pain. My arthritis is very minimal compared to what they go through.”

Continue readingFrom Coast to Coast: A Birthday Challenge Leads to Awareness, Funds for Arthritis

Dina Gilmore Champion of Yes Massage Therapist

When Failure Isn’t an Option

Walk to Cure Arthritis Anna LegassieSocial media is great for a lot of things — reconnecting with old friends, finding that next job, catching up on the news and perhaps even wasting a little (a lot of!) time. But when Anna Legassie logged on back in May, she wasn’t doing any of those things. She was just trying to get her medicine.

From Excitement to Disappointment

Anna, now 31 years old, was diagnosed with systemic juvenile rheumatoid arthritis (JRA) when she was 11 years old. She has endured six hip surgeries, multiple hospital stays and a constantly changing cocktail of medications to keep her arthritis at bay. After a particularly difficult spring suffering through the side effects of methotrexate, she and her doctor decided to decided to try Orencia (abatacept), a biologic drug that she would would receive by infusion every four weeks. Anna had tried most of the other biologic drugs on the market. None of them had been a fit for her.

Continue readingWhen Failure Isn’t an Option