An Arthritis Patient’s Journey With CBD

Read the Foundation’sofficial CBD Guidance for patients.

We recently connected with rheumatoid arthritis (RA) patient and Arthritis Foundation volunteer Ron Lev to find out more about his personal experience with CBD. Ron was formally diagnosed with RA 27 years ago and currently leads an Arthritis Foundation Connect Group, providing support to other arthritis patients.

关节炎基金会:谢谢你今天花时间和我们聊天,罗恩。首先,你是否使用处方药物来控制你的类风湿性关节炎症状?

Ron:Yes, for overall management of my RA, I use rituximab.

ARTHRITIS FOUNDATION: I also see that you have used CBD to help with your pain. What made you decide to try CBD?

Ron:In one word — steroids. Pretty much since day one of my RA diagnosis I was put on prednisone, and for the following 23 years, was a real addict. Trying to quit steroids, I always ended up in pain. And we all know what harsh side-effects steroids have, especially when taken long-term.

我开始使用CBD油,同时使用类固醇,这样我就可以减少类固醇的摄入。我开始将强的松的剂量减半,然后分四节。第三周结束时,我觉得我不再需要类固醇了。四年过去了,我从未回头。对于我的风湿性关节炎的全面管理,我使用利妥昔单抗。

ARTHRITIS FOUNDATION: With the rise in awareness of CBD products, where did you find information on CBD?

Ron:一切都始于一个骗局。大约五年前,我在网上看到一则广告,要求我试用只付运费的CBD油瓶。我心想,见鬼,为什么不呢?我不知道,这是个骗局。我确实买了一瓶油,但也买了一个每月高达100美元的自动充电计划!Getting off their fraudulent scheme was tougher than terminating cable television, but I finally did it.

This sparked my interest in really researching the topic of CBD. I learned all about the hemp plant and the naturally occurring substances within it. I also learned that there were many more cannabinoids in addition to CBD and how all these interact with our bodies.

ARTHRITIS FOUNDATION: That must have been very frustrating. When you decided to start researching on your own, how did you decide what form and dosage of CBD to use?

Ron:有这么多的产品在那里(其中许多质量很低)和很少或没有监管的市场,我决定来源我自己的原材料,创造我自己的油混合。我知道,很冒险。

经过彻底的市场调查和一些可靠来源的建议,我找到了我的来源,详细说明了我的规格,并要求样品。我准备进行实验。我决定从低剂量开始,然后逐渐增加剂量。我开始每天两次服用1/2ml,一周后,我感觉很好,所以增加到每天两次1ml,然后增加到2ml。我没有出现任何副作用。一年后,当我感觉良好时,我开始减少剂量,从每天2ml减少到1.5ml。这对我很有效。

关节炎基金会:在你试验CBD是否对你有效的过程中,你和你的医生讨论过CBD吗?

Ron:在经历了这么长时间的风湿性关节炎后,我学会了采取积极主动的方法。我经常自己做研究和功课,然后向我的风湿病医生咨询我的想法和建议。

我和我的风湿病医生进行了坦诚而开放的交流,但我决定在讨论CBD之前先试用几个月,看看我的身体反应如何。我并不是说这对每个人都是正确的方法,因为这取决于你的关节炎类型、疾病活动度、其他药物等。当我告诉他我不需要类固醇时,他尊重我的决定,尽管他说他不能推荐CBD。

In the case of CBD, or rather hemp oil (and cannabis in general), most MDs will refrain from actively approving such treatments simply because they have to follow the traditional guidelines of medicine with recommendations supported by substantial clinical trials if not completely approved by the FDA.

ARTHRITIS FOUNDATION: Thinking back on the entirety of your experience with CBD, what advice would you give other RA patients about using CBD?

Ron:I think three things are very important to remember:

  • Give it some time. People tend to expect an overnight miracle, and in the case of systemic diseases like RA, it just won’t happen. Cannabinoids need time to interact with our own endocannabinoid system and to interact with the relevant receptors within our cells. Give it time — it can take weeks, or even months to work. And, yes, it may not work at all. But if you won’t give it a fair chance, how would you know?
  • Use trial and error. Like with any medication, there’s no “one-fits-all” formula. There’s a lot of trial and error involved both with dosage as well as with the substance itself. You might be lucky and find your perfect match on your first trial, but you might also have to go through a few other products to find the one that works for you.
  • Don’t believe everything you read and hear. There are many people out there who are in the CBD space “for the ride” (Amazon is full of super cheap CBD products with specifications that don’t even make sense). Do your research and talk to others in your condition that found relief. There’s nothing like that patient-to-patient trust.

关节炎基金会:罗恩,谢谢你今天的时间和你分享你的故事。

To learn more about CBD, visit theArthritis Foundation’s website. Want to have your voice heard? Participate in acollaborativesurvey on medical cannabisfrom researchers at the University of Michigan, McGill University, the Arthritis Foundation and the Arthritis Society (Canada).

October 2021 Arthritis News Roundup

关节炎基金会是您可信赖的关节炎相关新闻和COVID更新的来源,影响关节炎患者。以下是过去一个月的新闻提要。

The latest in COVID-19 News & Arthritis

FDA Committee Greenlights COVID Vaccines for Young Kids

The Vaccine and Related Biological Products Advisory Committee for the U.S. Food and Drug Administration (FDA) voted by a majority to authorize the emergency use of Pfizer-BioNTech’s COVID vaccine for children ages 5 through 11.Read the latest.

FDA Authorizes Boosters for Moderna and J & J, Allows Mixing

The U.S. Food and Drug Administration (FDA) has authorized booster doses for the Moderna and Johnson & Johnson COVID-19 vaccines, while also allowing boosters to be given interchangeably with any of the other vaccines in people who are eligible to get them.Learn more.

CDC Research Shows Children Equally Vulnerable as Adults to COVID

According to new research from the Centers for Disease Control and Prevention (CDC), children had similar infection rates, compared with adults, confirming there is risk of people of all ages. The research revealed that schools without mask requirements were three-and-a-half times more likely to have COVID-19 outbreaks than those enforcing mask mandates.Read more about it.

Get the latest on managing your arthritis during the COVID pandemic in theCare & Connectresource center.

In Other Arthritis News

Prevalence of Arthritis in the U.S. Continues to Rise

National prevalence of arthritis and arthritis-attributable activity limitations continue to increase. According to the CDC, 58.5 million (23.7%) U.S. adults now have arthritis — 25.7% of whom have arthritis-attributable activity limitations. Read more aboutthe impact of arthritis.

New Finding: 71% of Active Adults With Arthritis Walk for Physical Activity

体育活动可以减少疼痛、残疾和功能限制,同时还可以改善成年关节炎患者的心理健康和生活质量。超过三分之一的患有关节炎的成年人进行有氧运动。美国疾病控制与预防中心(CDC)的新研究显示,在过去一个月里锻炼身体的成年关节炎患者中,约有71%的人表示,走路是他们最常做的两项活动之一。Learn how other activities ranked.

And be sure to check outWalk With Ease, the Arthritis Foundation’s walking program proven to reduce arthritis symptoms and improve health.

FDA Approves Combo Pill for Severe, Acute Pain

美国食品和药物管理局(FDA)批准了一种含有塞来昔布和曲马多的复方药物,用于治疗急性疼痛严重到需要阿片类镇痛药,而替代疗法不能提供足够的疼痛缓解。在这里获取详细信息。

To learn more ways to take control of pain, visitarthritis.org/pain.

FDA Approves First Nasal Spray to Treat Dry Eye

TheFDA has approved varenicline solution(Tyrvaya),第一种获准用于治疗干眼症的鼻用喷雾剂。Varenicline溶液将为目前可用的免疫调节剂提供一种替代方案。

Learn about theconnection between dry eyes and arthritis.

Updates to Guidance for Shingles and Pneumococcal Vaccines

The CDC Advisory Committee of Immunization Practices (ACIP) voted torecommend zoster vaccine recombinant, adjuvanted (Shingrix) for the prevention of shingles in immunodeficient or immunosuppressed adults age 19 or older. During the same meeting, ACIP also voted to recommend pneumococcal vaccines for routine use in adults older than 65 and in adults ages 19 to 64 with chronic conditions such as diabetes, chronic heart disease, chronic liver disease and HIV, and disease risk factors like smoking and alcoholism.

National Emergency Declared for Mental Health in Children

The American Academy of Pediatrics (AAP), the American Academy of Child and Adolescent Psychiatry (AACAP) and Children’s Hospital Association havedeclared a national emergency in children’s mental health. According to the organizations, COVID-19 has taken a serious toll on top of already mounting challenges and policy changes are urgently needed.

Know the signs andhow to recognize emotional distress in your child with juvenile arthritis.

High-Intensity Resistance Training Bests Pilates for Better Bone Density in the Spine

An eight-month high-intensity resistance and impact training program (HiRIT, Onero) led to greater gains in lumbar spine bone mineral density (BMD) and leg/back strength than a low-intensity Pilates-based program.Learn more.

Retraining the Brain May Help Relieve Chronic Back Pain

根据一项新的研究,病人对疼痛的感知在疼痛的结果中起着关键作用。心理疗法改变了个体对疼痛的信念,不仅提供了持久的慢性疼痛缓解,而且还改变了与产生疼痛有关的大脑区域。Read more about it.

Exercise Appears to Improve Bone Structure, Not Density

A recent study concludes there’s much more to bone health than strictly bone density and that postmenopausal women with low bone mass should obtain adequate calcium and vitamin D as well as participate in bone-loading exercises.Learn more.

Vim Champion: Tiffany Coffman

作为一名关节炎患者和关节炎基金会的长期志愿者,蒂芙尼找到了回馈和鼓励他人的方法。She also recommends trying the new Vim app.

By Tiffany Coffman, Denver, Colorado

我有两个患有关节炎的孩子,我自己也在与四种疾病作斗争。我每天吃36片药,从我的处方治疗疾病的抗风湿药(DMARDs)到非处方止痛药。老实说,这有时很艰难,但我们已经度过了这一切,这在很大程度上要感谢我们在过去15年里在关节炎社区结交的许多朋友。我成为了一名充满激情的关节炎基金会志愿者,因为我想回馈社会,帮助他人,就像我们被帮助一样。

As part of a community of 54 million warriors, we can each do something to fight arthritis by giving what we can — whether that’svolunteering,advocating ormaking a tax-deductible donation.在世界关节炎日,我们可以与每一个生活在痛苦中的人分享希望。

My family’s arthritis journey

My pain began when I was in high school. I was super active in soccer, marching band and coaching sports at the YMCA. All of that came to a screeching halt when I was diagnosed with rheumatoid arthritis. I hurt all over, especially in my feet, ankles, wrists and fingers. Since then, I’ve also been diagnosed with osteoarthritis, fibromyalgia and Sjögren’s syndrome, all of which are arthritis-related conditions. Soon I will have a bone-scan for osteoporosis, which will be a whole new ballgame.

Arthritis has also affected my children. My son, Christopher, who’s now 17 and a high school senior, had symptoms at birth. I took him to the doctor when he was 18 months old to find out why he wasn’t walking. A year later, he was diagnosed with juvenile arthritis (JA).

几年后,我的女儿布列塔尼(Brittany)在15岁时被诊断出患有纤维肌痛。谁能想到它会影响生殖系统?我们从关节炎基金会了解到这一点,以及当我27岁的已婚女儿不能怀孕时我们可以探索的替代方案。I’m thrilled to become a first-time grandma of my adorable new grandson, whom they recently adopted.

I love kids.

Over the years, we’ve participated in Arthritis FoundationJA camps, JA family days and the NationalJA Conference, which were so informative and inspiring to our whole family as my children grew up. Besides my involvement in those, I became a leader and moderator for生活是的!Connect Groups为JA的父母们准备的,我们在大流行期间几乎一直都是这样。My family has also been active in our localWalk to Cure Arthritis.

I volunteer for the Arthritis Foundation’sHelpline, too, when questions come up about JA. I feel the best way to help is to listen and show compassion for what someone believes is their most difficult situation ever. I have learned to be more compassionate. Everyone has an issue, so we make the best with what we have.

I love my job, and I love kids, which is why I’ve run my own daycare center from home for several years. But watching 10 kids a day can be challenging at times. To keep up and keep me going, I’ve been using the Arthritis Foundation’s newVim app. It’s part of the Foundation’s overall focus on managing chronic pain, which I also love.

The Vim app can help change your life.

The free Vim apphas so many benefits. I hope you’ll give it a try. It’s easy to use, which is great for someone technology-challenged like me!

  • In Vim, I get asked what my pain level is every day — a question I don’t usually get asked except at my doctor’s appointments. So, I get to monitor my pain over a period of time, see what’s triggering my symptoms when, and maybe make adjustments so I’m in greater control.
  • 我什么都用过了——应用程序的饮食建议、瑜伽、冥想、自我反思、呼吸、你可以使用的不同补充剂等等。这都是在那里。
  • You can set your own short-term goals and keep track of how you’re doing. Like walk to the end of the block three times a week. Get in the car and take a ride twice a week. Reach out to a friend for moral support. Just give it time and practice.
  • The encouragement I get from others in the arthritis community is unbelievably motivating. Besides seeing people cheer me on, I can help others if they’re having a bad day. We’re all in this together.

With Vim,你可以把被慢性疼痛带走的东西拿回来。试一试。我真心推荐它!

The invaluable support and resources that have made such a big difference in Tiffany’s life are made possible thanks to friends like you. You can power more life-changing research, support and tools bymaking a donation today.

September 2021 Arthritis News Roundup

关节炎基金会是您可信赖的关节炎相关新闻和COVID更新的来源,影响关节炎患者。以下是过去一个月的新闻提要。

The Latest in COVID-19 News and Arthritis

WHO Monitors New ‘Mu’ COVID-19 Variant

The World Health Organization is monitoring a new coronavirus variant called “mu,” which the agency says has mutations that have the potential to evade immunity provided by a previous COVID-19 infection or vaccination.Get details here.

NIH to Study COVID Vaccine Booster in Autoimmune Patients

The National Institute of Allergy and Infectious Diseases has begun a phase 2 trial toassess the antibody response to a booster doseof the Pfizer-BioNTech, Moderna or Janssen vaccine in people with autoimmune disease who did not respond to their original COVID-19 vaccine regimen.

COVID-19 Vaccine Elicits Antibodies in 90% Taking Immunosuppressants

Nearly 90% of people taking immunosuppressants to treat autoimmune conditions produce an antibody response to COVID-19 vaccination, but the response is weaker than those generated by healthy people, according to a new study.Learn more.

Get the latest onArthritis and COVID-19 vaccines FAQsin ourCare and Connectresource hub.

Nasal Cartilage Relieves Knee Osteoarthritis

Cartilage cells from the nasal septum cannot only help repair cartilage injuries in the knee — they can also withstand the chronic inflammatory tissue environment in osteoarthritis (OA) and even counteract the inflammation, according to researchers at the University of Basel and the University Hospital of Basel.Read all about it.

Drug Adherence Tied to Genetic Influences, Not Side Effects

The results of new research suggest that drug adherence pertains more to an individual’s genetic predisposition to particular behaviors than to underlying biological factors, such as the adverse effects of a specific drug, the researchers conclude.Learn more.

Cannabis Use Tied to Poorer Outcomes of Total Hip, Knee Replacement

Cannabis use before total knee or hip replacement is associated with increased medical and implant-related complications, according to new research presented at the annual meeting of the American Academy of Orthopaedic Surgeons.阅读更多。

TheArthritis Foundation developed guidance for adults with arthritiswho are exploring CBD use as a treatment for managing pain and other symptoms of arthritis. Learn more aboutwhat you should know about CBDbefore trying it.

And learn more abouttotal kneeandhip arthroplasty. If you’re exploring whether surgery is right for you, listen to the podcast episode onArthritis Pain & Surgery.

In Other Arthritis News

Arthritis@Work for Corporate Wellness Programs

The Arthritis Foundation is offering employers free turnkey tools and resources to support their employees with arthritis. As the second largest driver of employee health care costs, arthritis is responsible for 172 million lost workdays each year. Integrated into existing corporate wellness programs,Arthritis@Work是一个双赢的方式,为雇主保护他们的底线,照顾那些关心他们的业务。

Novartis Gets FDA Fast-Track Designation for LNA043 in Knee OA

The Swiss drug maker said it isdeveloping LNA043 as a potential first-in-class disease-modifying treatment for OA. The FDA’s fast-track program is designed to facilitate the development and expedite the review of treatments for serious or potentially life-threatening illnesses with high unmet medical needs.

No Sex Difference Seen for Ankylosing Spondylitis

在一项针对军事人员的大型研究中,强直性脊柱炎(AS)的发病率在男性和女性之间没有差异,这对之前关于该疾病以男性为主的假设提出了质疑。Read about the study.

Osteoarthritis: New Genetic Risk Factors and Novel Drug Targets

Researchers have found new genetic risk factors for OA and identified novel drug targets. Their finding is a milestone toward the development of the first ever curative treatment for OA.Learn more.

TPX-100 Delays Bone Shape Change, Stabilizes Cartilage in Bilateral Knee OA

TPX-100, a promotor of osteoblast and chondroblast differentiation, is a potential therapy for OA. A new retrospective study compared MRI 3D femoral bone shape changes (B-scores) after intra-articular TPX-100 or placebo and analyzed therelationship between cartilage thickness and bone shape changeover 12 months.

For pain management resources and tools, visitarthritis.org/pain.

Natalie Decker

Natalie Decker is a长期强度冠军,这意味着她不仅控制了自己的痛苦,她还进行了反击。阅读下面的文章,了解娜塔莉是如何战胜类风湿关节炎的。

在我生命的大部分时间里,我知道两件事:1)我一直想成为一名纳斯卡赛车手;2)生下来就患有幼年类风湿性关节炎(JRA)并不会阻止我追求充实、积极的生活。现在,24岁的我可以很高兴地说,作为纳斯卡赛场上最优秀的年轻车手之一,作为其他关节炎患者追逐梦想的倡导者,我已经完成了对两者的承诺。

The road to managing RA

Getting to this place in my life has been full of ups and downs. After being diagnosed with JRA at the age of 2, I began a high dosage of a chemo drug once a week for over 10 years. It made me very tired, gave me headaches and left me feeling sick and nauseous all the time. Around the age of 12, I went into remission and got off the medication.

Throughout this time, I continued to stay active. In fact, my pediatrician couldn’t believe all that I could do as a child. Whether it was dance, hockey, soccer or go-kart racing, he told me that the activities should have been physically impossible for me to do, and yet, I persisted. I learned early on the importance of having a great support system and believing in myself to achieve whatever I put my mind to. This helped me manage the symptoms of my disease and stay active while also pursuing my dream of becoming a NASCAR driver.

Today, managing my RA looks different. I came out of remission not long ago, and the pain and stiffness are significantly worse than when I was younger. I am learning how to take care of myself and build in regular breaks throughout my day. Racing in my car for hours at a time in one position can be painful, so I must be prepared, learn how to recover fast and know my limitations in the gym. The Arthritis Foundation’sVim app已成为一个有用的工具,在设定和跟踪目标和获取最新信息的疼痛管理。像许多风湿性关节炎患者一样,我目前正在通过输液来控制症状。

Building a community

在我成长的过程中,我的父母并不知道关节炎基金会和它提供的所有好处,但我很幸运,在我的整个过程中,我的家人都支持我。我们会在周末去各地参加赛车比赛,在那里我们遇到的每个人都成了我们的大家庭。它帮助我努力工作,追求我的梦想,知道我的支持者在为我加油。

Because I know how important it is to have that community in place, I’ve made it my commitment to partnering with the Arthritis Foundation to help give kids the support they need — just like I did. I’ve become involved with Live Yes!Connect Groupsand theJA camps(my favorite!) and see firsthand the immense benefits they provide to young patients. While I wish I had known about them growing up, it’s now my mission to help ensure that other kids go to camp and have access to the resources, local programs and support they need through the Arthritis Foundation.

Having a community of support is so important to empowering young people to chase their dreams and live a full life. For a long time, I was hesitant to share my story, but I’m so grateful for the opportunity to share it now and hopefully play a small role in inspiring others. Together with the Arthritis Foundation and the public’s help, we can change lives!

King of the Hill in Fighting Chronic Pain

海伦·金是关节炎基金会的长期志愿者,她在当地(宾夕法尼亚东部和新泽西南部)抗击关节炎方面产生了重大影响,也是我们国家董事会的新成员。在这里,她谈到了基金会的疼痛管理策略。

By Helen King, King of Prussia, PA

去年春天,有人问我是否有兴趣加入关节炎基金会的全国董事会,我感到很惊喜。我是。去年夏天,我被董事会全体成员投票选出。这对我来说是多么的荣幸和荣幸,在过去的几年里,我一直在为当地的基金会做志愿者。

I was diagnosed with acute onset, and aggressive, rheumatoid arthritis (RA) in 2014. I didn’t expect this sudden diagnosis, and it felt like a death sentence at the time. I pictured myself being immobile, wheelchair bound and worse. I’ve also been diagnosed with osteoarthritis, degenerative disk disease and spinal stenosis. I underwent spinal surgery several years before my RA diagnosis. Perhaps that’s when my RA started developing. We’ll never know. Learning I had RA was a tough blow, and I didn’t know where to turn until I found the Arthritis Foundation.

加入关节炎基金会是我回馈社会的一种方式。在过去的几年里,我自愿成为白金大使,大声疾呼,帮助制定新的法律,使医疗保健更负担得起,更容易获得。我带领着我们当地的“步行治愈关节炎”团队,自2017年以来,我们已经为关节炎研究和资源筹集了大约30万美元。I’ve led local and national生活是的!Connect Groups帮助我们的社区更紧密地团结在一起,特别是在大流行期间。

一切就是这样开始的。这也是我投身于关节炎社区的原因。这是一个真正相互支持的家庭。作为一名志愿者,你一路上会遇到很多人,这是一个很棒的支持系统。我知道我对当地的人们产生了影响。现在能在全国范围内回馈社会,我很感激也很谦卑。随着基金会的疼痛管理策略的实施,我可以把更多的病人的观点纳入其中。这就是我感到兴奋的地方。

From my view as a patient: I’m really glad that the Arthritis Foundation is puttinga special focus on pain managementover the next few years. Pain permeates everything, and it’s very individualized. If you’ve never lived in chronic pain, it’s kind of hard to understand how it can seep into every part of life. It impacts you socially, financially, emotionally, mentally and spiritually. Living with chronic pain every day changes who you are.

疼痛会影响你的心理健康和睡眠质量。它会导致抑郁和焦虑。我认为关节炎基金会的策略包含了疼痛的心理健康方面,这是很好的,这需要被认识和关注。我认为大多数人,包括医学界的专家,都没有意识到伴随慢性疼痛的抑郁和焦虑的程度。

I’ve learned that managing your pain is a layered experience. It’s multi-faceted for me. Maybe just one thing won’t take away your pain. Yes, it’s diet. Yes, it’s exercise and sleeping better. Yes, it’s pharmacological if need be. Each layer can help. It’s a multi-layered scenario that arthritis patients need to know more about. I love the idea that you can focus on short-term goals throughVim, the Arthritis Foundation’s new app,which I’m using regularly to make some progress, a step at a time. Perhaps best of all, you can connect with others like you, if you wish, to share tips and cheer each other on.

Holistically, the Arthritis Foundation’s stake-in-the-groundpain management statementis a huge focus area going forward. When talking with so many different people with many forms of arthritis in recent years, I often hear them say the pain aspect is diminished or forgotten. That they’re not heard when they go to the doctor. That they’re not heard by policymakers and other decision makers.

It’s important to understand that this is an Arthritis Foundation priority. It has always been there, but now it’s being spotlighted in a bigger way. Everything about the arthritis movement must keep that pain aspect in mind. Just know that my fellow board members and I are standing up for you as the Foundation focuses on the number one complaint people with arthritis have: PAIN. I’m proud to represent you as a new national board member. And I appreciate this opportunity to make an even bigger impact on a larger stage.

Helen’s tips for living your best life with arthritis:

1.) Find your tribe

寻找那些能在你不顺的时候支持你的人,在你不顺的时候陪你一起庆祝的人。

2.) Be proactive in your health care

Advocate for yourself. It’s not about your doctor telling you what to do, it’s about partnering and learning how to talk to your doctor to get the best outcome.

3.) Practice self-care

A lot of women are bad at putting themselves first. But it’s important to do something that feeds your soul. For me, it’s volunteering and giving back.

4.) Keep a positive attitude

We all have down days. By no means am I flying through this without getting depressed or gettingtiredof being in pain after 3 days of a flare. I just try not to get stuck there.

Travis Salmon

Travis Salmon is a长期强度冠军, which means he doesn’t just take control of his pain — he battles back. Read to learn how Travis has found ways to overcome his osteoarthritis.

In my late 20s, I was unexpectedly diagnosed with end-stageosteoarthritis(OA) in my ankle — and told that, at some point, I’d need to have my ankle fused. Fresh out of law school and still playing basketball multiple times per week, the news came as a total shock. As a former college athlete, I was devastated that I might never be able to shoot hoops with my own kids.

For 15 years, I tried anything and everything to avoid ankle fusion surgery. The possibility of it scared me. I envisioned a future where I would be unable to move my ankle permanently and was determined to avoid surgery.

Overcoming emotional and mental challenges

During this period, the physical pain was a huge part of my journey. But the emotional and mental aspects of OA were just as challenging. The diagnosis really limited what I could do with my family. Daily, I’d wonder how I would manage simple things like grocery shopping and carrying my kids around. And when it came to family trips, I’d plan the entire vacation around activities that didn’t involve much movement.

Desperately searching for an all-encompassing resource to learn about treatments and options for managing my disease, I tried every OA treatment available. From stem cell therapy to assistive devices, and even participating in clinical trials. During this time, I also began volunteering with theArthritis Foundation of Greater Kansas City (AFGKC)最终加入了他们的董事会。我发现了一种深刻的意义和联系,与年轻人分享我的故事,谈论如何克服关节炎的挑战。

在用尽了不用手术就能处理OA的方法之后,我最终接受了踝关节融合治疗,这几乎治愈了我的关节炎疼痛。我非常感激。它让我的生活变得更好。恢复大约花了一年时间。但今天我能走路、跑步、慢跑,做一些我20年来都没能做的事情。

Finding my community

My pain management journey has been a long and winding road. And until I discovered the Arthritis Foundation, it was a lonely one, too. Now, as a patient advocate, I work to ensure patients that you can more quickly and easily gain access to the wealth of resources the Arthritis Foundation offers.

Through theVim app, I have all the resources needed right at my fingertips, including treatment options, pain management tips, suggestions for physical activities and local groups and events to connect with right here in my own community. I also rely on the app’s ability to track my pain in between doctor’s appointments, which has helped ensure more accurate and informative discussions when it’s been months since my doctor and I talked. I only wish that I had access to this 20 years ago, when first learning about my diagnosis. For anyone going through this journey, know that you do not have to spend years looking for solutions and educating yourself in isolation, like I did.

今天,我作为一个忙碌的审判律师和两个孩子的父亲,过着积极的生活,除了作为一个病人领导委员会成员的角色。虽然我打篮球不能达到我在大学时的水平,但我仍然积极锻炼身体——游泳、骑自行车、散步和举重。对于被诊断患有关节炎的年轻人:我对你们的希望是过上健康、积极的生活,更重要的是,在你周围有必要的支持和资源来保持前进——即使是在艰难的时期。

Yoga: So Much More Than Just Movement

作者:Rebecca Gillett, MS OTR/L, Live Yes!With Arthritis Podcast Co-host

September is Pain Awareness Month, and in this podcast episode,Mindful Movement Part 2: Yoga,我们正在探索保持身体运动的方法,以防止关节炎疼痛限制我们的生活。在上节课中,我们关注了正念运动和太极。这一次,我们将深入到瑜伽和关节炎的正念运动。

When you have arthritis, you probably think, “No way can I do those poses with my joint pain. Yoga is going to make my pain worse!” That’s exactly how I felt when I was first diagnosed.

我有一个最喜欢的漫画,它展示了我对关节炎和瑜伽的看法。为了好好笑一笑。It shows the Tin Man fromThe Wizard of Ozin a yoga class. I’ll wait…. You’re welcome.

我20岁出头就开始上瑜伽课,而且非常喜欢。虽然那是很久以前的事了,但我仍然记得下课时那种平静和正能量的感觉。事实上,我清楚地记得有一节课结束时,我是如何放松到睡着的!我醒来时看到灯亮了,大家都走了。想象一下:瑜伽练习让你处于一种平静、放松的状态,你会睡着。

但在我26岁的时候,我被诊断出患有类风湿性关节炎,在最初的两年里,我一直在与疼痛作斗争,以至于我停止了瑜伽。因为手腕疼痛,我觉得我再也做不下去了。

我经常谈到我们有时是如何“卡在”我们的痛苦中:我们无法透过痛苦看到可能就在我们面前的解决方案,因为我们处于生存模式。我们挣扎着做一些最基本的事情——起床、刷牙、下楼。任何类型的运动都可能是令人生畏的,所以做勇士或山地姿势的想法听起来更难以实现。

This episode,Mindful Movement, Part 2: Yoga,was a fantastic reminder to me about what the practice of yoga truly entails and how you can adapt yoga to suit your needs. Our guest expert, Steffany Moonaz, PhD, founded the Yoga for Arthritis program after eight years at Johns Hopkins University, where she studied the effects of yoga for people living with arthritis. She helped us remember that there’s a way to practice yoga for everyone, no matter where you are in your journey with arthritis. Whether you practice chair yoga or modify a few poses, alone at home or in a group class, the physical and mental health benefits can go a long way to improving your overall well-being. Dr. Moonaz also shared ways to make sure you can find a yoga practice that works for you and a yoga instructor that’s right for your needs.

Tune in to this episode to learn how you can start incorporating yoga practice into your daily routine today.Listen now!

We Bid Thee Farewell, Julie!

一定要听完本集的最后,我们将和搭档主持人朱莉·埃勒聊一聊。这是我们一起录制的最后一期节目在她离开去开始公共卫生硕士课程之前。朱莉在关节炎基金会工作期间一直是一股不可忽视的力量。她帮助发展我们的基层宣传工作,她不知疲倦地工作,以确保患者的观点融入我们所做的一切与医疗相关的工作。我无法想象还有比这更好的人来共同主持这个播客了,在这个过程中,我们能从一起做这件事中得到多少。我感谢在这段旅程中我们一起跳的每一支舞、每一个微笑、每一次失误以及所有的欢笑(有时也有泪水)。最重要的是,我永远感激我们之间的终身友谊。祝福我的豆荚妹妹朱莉!“哦,你要去的地方!”

Team PLC

This is the second of two profiles this month of people 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 Laura Genoves

ThePatient Leadership Council(PLC) was formed by the Arthritis Foundation in 2017. I have been fortunate to serve as a member of this diverse group of individuals from across the country since its inception.

在COVID-19之前的日子(还记得那些日子吗?)我每个月都会亲自到西雅图当地的关节炎基金会办公室做一两次志愿者。一位工作人员向我提及新成立的PLC,并鼓励我申请。当时,我刚刚完成了在华盛顿大学法学院的有限许可法律技术员(LLLT)的学习,并朝着我对负担得起的司法途径的热情而努力。lllt为生活在华盛顿州的人提供负担得起的家庭法律服务。获得LLLT执照使我有机会为那些传统上无法负担律师全套服务的人讲述他们的故事,并赋予其意义。现在我为那些不能代表自己的人提供专业的专业协助。

Being a member of the PLC has also afforded me the chance to be a voice for others. As a mom of two young adults (and two rescue golden retrievers), I share my own personal experiences living with rheumatoid arthritis (RA) and now osteoarthritis (OA), but I also advocate for the millions of others living with arthritis and related diseases. As a group, the PLC has discussed such timely topics as access to health care, prescription drug copays, out-of-pocket costs and CBD, and we have reviewed proposals under development by the Arthritis Foundation. We share with each other in a safe, confidential environment and exchange tips, tricks and tears.

我们,作为PLC,提供给关节炎基金会的反馈经常阐明,并总是丰富基金会的产品。基金会倾听我们多样化的声音,并将我们的反馈纳入其材料和项目中。看到我们正在做出改变是令人满意的。我从其他委员会成员那里学到了很多,也交到了全国各地的朋友。

If you have a passion for ensuring diverse voices are heard and are willing to be vulnerable and share your experience, consider being part of the PLC. All are welcome to the table and your lived experience is valued.

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!

Cristina Schaefer

Cristina Schaefer is a长期强度冠军,这意味着她不仅控制了自己的痛苦,她还进行了反击。Read to learn how Cristina has found ways to overcome her rheumatoid arthritis.

Seventeen years ago, my life changed when I was diagnosed with rheumatoid arthritis. As someone who had always been active and athletic, the diagnosis hit me like a ton of bricks. Some days, I’d wake up with my elbows completely locked in a bent position, or my knees would lock when I’d stand. After a few years on biologic treatments, I was able to live, work and play again with little to no pain most days.

When my husband and I decided to start a family, I had to get off the medication that had kept me active and relatively pain-free for over 10 years. It was a stressful and painful time, but ultimately when our daughter was born, it was so worth it. Within a week of her birth, my RA symptoms came back with a vengeance. All the required and loving tasks as a new mom — holding her, snapping onesies, changing diapers — suddenly became impossible. Soon after, I met with my doctor to start the process of a new treatment plan.

Staying in control

Now, almost five years later, my doctor is still working with me to get me back to the controlled state I was in. Some days are great, others are not so great. All I can do is take each day as it comes and fight. I’ve said that a good measure of control over my arthritis revolved around the ability to give my daughter a bath and braid her hair at night without pain after working a long day.

最近,我服用了一种药物,帮助我重新获得了一些控制。我发现为自己设定目标可以帮助我保持动力,变得更强大。When the Arthritis Foundation launched theVim app,我立即下载了它,并开始跟踪我的进度。在粉碎了我最初的目标后,现在我把我的目标放在新的举重和其他体育活动的目标上,以支持我的身体健康,所以我可以确保我的健康,在未来的许多年里,我的女儿成长。对于关节炎患者来说,很难找到不让人觉得遥不可及的健身资源和目标,而Vim满足了我们和我们的需求。

When I have downtime or periods of rest and recovery between my exercise regimens, I have found getting back to the gym is easier when I use daily affirmations. Lately these include telling myselfI’m doing my best, I believe in myself, all progress is progressandI will listen to my body.

Connecting to resources and the Arthritis Foundation community

In researching pain management and sleep deprivation — the two areas I am often challenged with the most when it comes to my RA symptoms — the Arthritis Foundation has been a crucial resource in finding the helpful information I need. Over the years, this has includedinformative webinars, the生活是的!With Arthritispodcast,blog postson the topics,dietary resourcesand, most recently,in-depth information on using CBD帮助缓解疼痛和睡眠不足。我还没有尝试过CBD,但我感觉自己对它有了更多的了解,了解了使用它的方法以及不同方法/应用的优缺点。

Since the beginning of my journey with RA, I have been involved with the Arthritis Foundation through Walk to Cure Arthritis. I have connected with so many helpful resources and met many inspiring and supportive people through this community. This year, I am honored to co-chair theNational Walk to Cure Arthritis把我的想法和激情带到国家层面。当我不忙于社交媒体工作或陪伴家人的时候,我还担任基金会休斯顿领导委员会和患者领导委员会的副主席。