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.
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.
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 applyHERE．提交申请的截止日期是晚上11:59。2021年10月15日。如果您被选中进入下一步，我们将在11月上旬至中旬通知您。感谢您的关注!并传播这个消息!
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.
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．“‘总有一天，你的双膝都得换掉，你的臀部也不太好，’”他告诉西蒙。
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.
“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．这让我想弄清楚是什么触发了我的个人情感。”
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.
“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.”
Filming for Food Network has also changed dramatically for him. 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.”
“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
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.”
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.
What I learned through gaining these two degrees were a few key lessons.
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.
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.
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 andshare your story with the Arthritis Foundation．我经常听到别人说，他们的声音没有那么有力，因为他们觉得自己的集体经历没有那么困难。它仍然是我们集体经验的声音。我想听听每个家庭是如何克服准入障碍的。是缺乏基础设施，缺乏提供者，还是社区缺乏资源?你们的障碍是什么?作为母亲、妻子、姐妹、父亲、兄弟和战友，我们能做些什么来帮助那些需要帮助的人?How can we take power and change the conversation?
Gain a better understanding of your health care coverage and all the insurance terms. Visit the Arthritis Foundation’sRX 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.
By now, those of you reading this are likely experiencing a shelter-in-place order, school cancellations, or other social distancing situations in your own communities due to the COVID-19 global pandemic. Here in California, our state is under a statewide shelter-in-place directive and I am on week 2 of 4 with my children’s schools transitioning to “distance learning”. Some districts in our area have already announced this will continue for the remainder of the school year. If you are anything like me, this sudden and massive change has rocked your family unit and you are trying to navigate the unfamiliar.
The Sowa family’s journey with arthritis started years ago when Ryan, the middle brother, was diagnosed. Starting at 15 months old, Ryan would get random fevers and unexplained rashes, eventually leading to abdominal and joint pain. There were days he couldn’t even walk.Continue reading2020 WTCA Youth National Honorees→
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