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Rheum Champions Tell All, with My Spoonie Sisters

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Summary:

Have you ever wanted to become involved with patient advocacy or research, but do not know how to start? 

On this episode*, Andi Byers interviews Jennifer Weaver and Cheryl Crow, who share highlights from their experiences as “Rheum Champions” with the Rheumatology Research Foundation. 

Jenni and Cheryl share the research highlights that stood out the most for them, from new research on POTS and Covid to the importance of sleep and fatigue management. We also shine a light on recent advancements in lupus treatment and managing stress and activity through “positive activity scheduling.” 

Cheryl and Jennifer also share personal stories on navigating sleep hygiene, the subtle pressures of defining “normal,” and the importance of sensitivity in language. Through these reflections, we emphasize a broader understanding and embrace of diverse health experiences. We also reflect on the importance of finding supportive communities.

*This episode was originally recorded as part of the My Spoonie Sisters podcast. 

Episode at a glance:

  • Getting Involved: Patient advocacy and research as “Rheum Champions” with the Rheumatology Research Foundation
  • Research Highlights: New findings on POTS and Covid, the role of sleep and fatigue management in chronic illness, Advances in lupus treatment, Benefits of positive activity scheduling for stress and activity management
  • Personal Insights: Real-life strategies for improving sleep hygiene, Challenging the idea of what’s considered “normal,” The power of sensitive and inclusive language
  • Community & Support: The importance of finding and connecting with supportive communities, Encouragement for those looking to get involved in advocacy

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Jenni Weaver

Meet Jen, founder of My Spoonie Sisters and the face behind @gracefully_jen on Instagram and TikTok. She created this community for spoonies of all shapes, sizes, challenges, and spoons to support, educate, teach, and learn. We believe in the power of knowledge and the joy of learning, and we also enjoy some humor along the way.

Living with anxiety, rheumatoid arthritis, and medically induced psoriasis, she understands the challenges you face. Jen strives to support other women the way she needed and didn’t have at the beginning of her diagnosis with RA, because she knows how important it is to feel understood and cared for. 

Andi Byers

Meet Andi Byers! She is the founder and CEO of Chronic & Iconic Coaching, Iconically Holistic, The UP-side of Down Life Coaching, Invisible Apparel Co, and ICONIC Business Solutions.

Andi is a decorated Air Force veteran, registered nurse, holistic wellness practitioner, business strategic alignment expert, and published author. Andi’s expertise is multifaceted, bridging the worlds of healthcare and personal development. Her passion for uplifting women’s well-being led her to design and facilitate empowering workshops, courses, and retreats. These transformative experiences offer women a sanctuary to rediscover themselves, encouraging them to embrace a life of authenticity and balance. 

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for over twenty years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Full Episode Transcript:

Andi Byers (00:00):

Welcome back to another episode of My Spoonie Sisters. I’m your co-host, Andy, and today we have an incredibly exciting episode for you. We’re diving into the heart of rheumatology, advocacy, research, and empowerment with two remarkable guests, Jennifer Weaver and Cheryl Crow. Jen, our beautiful host is a passionate patient, leader and advocate dedicated to shining a light on life with rheumatoid arthritis and inspiring others to live their fullest lives despite chronic illness. 

Cheryl is an extraordinary occupational therapist, fellow advocate and founder of arthritis Life where she empowers people with arthritis through education and practical strategies for thriving. These two inspire women recently represented the rheumatology community as room champions at the A CR Convergence in 2024, where they attended cutting edge sessions and spoke at prestigious rheumatology Research Foundation awards luncheon. 

Together, they bring a unique perspective on the latest advancements, meaningful conversations, and how we can continue to break down the barriers for those living with chronic illness. Ladies, I’m glad to have you on the pod. Are we ready to chat?

Cheryl Crow (01:07):

Of course. Thanks so much.

Andi Byers (01:09):

Awesome. So the A CR, what does that even stand for? People who are unaware of what that even means?

Cheryl Crow (01:17):

Yeah. The A CR stands for American College of Rheumatology, which is a little misleading because it’s not a college like a university. It’s a professional association, kind of like if you’ve ever heard of the American Academy of Pediatricians, say the American Academy of Pediatricians suggest blah, blah, blah. It’s like that for rheumatology. And a CR is American College of Rheumatology and the conferences where they bring together all the leaders in the field to talk about the latest research, latest greatest developments,

Jenni Weaver (01:48):

And they like to call it where rheumatology meets

Andi Byers (01:52):

What rheumatology meets what.

Cheryl Crow (01:55):

So where they meet together to discuss the latest updates. And I will say it’s also what’s really cool about it for me as a occupational therapist is it’s also a truly multidisciplinary organization. So they also have nurses, nurse practitioners, psychologists, physical therapists, occupational therapists, anyone in the health field that works with people with rheumatic and musculoskeletal diseases is able to come to this conference and learn. Oh, also pharmacists, often unsung heroes.

(02:27):

So they have separate tracks for people who are MDs or doctors versus the allied health professionals. Historically, they haven’t involved patient partners as well as they could have, and I think that there’s been a big push in the chronic illness community to involve what they call patient partners or patients who are the experts in their own care in these events. And so Jen and I were able to represent the rheumatology patient community as room champions with a affiliated organization, the Rheumatology Research Foundation, RRF. They’re the foundation that raises money for research in rheumatology.

Andi Byers (03:06):

That’s a lot of acronyms. That’s a lot of acronyms. So can you share a little bit more about, we’ve covered the acronym base, we got some new wrinkles on our brains. Has it meant for you guys to be room champions?

Cheryl Crow (03:19):

Yeah. Do you want to go first? Sure. Yeah, sorry. Yeah, I think that for me it is just intrinsically empowering to be invited to share the patient voice. And it’s been a really positive experience because the researchers, I think that a lot of them, this is just my impression from talking to them, but they are very cerebral and they’re looking at databases and spreadsheets and sometimes they maybe were motivated to join the research field initially because they want to help patients. They want to help advance the field, and ultimately, everyone’s trying to understand how these diseases work so they can find a cure.

(03:57):

But sometimes they get the day to day of their work is very tedious and they don’t get to actually talk with patients that often. Who are the ones that are actually benefiting from their work. I mean, I think Jenny, maybe you felt the same. I don’t know, but share your opinion. But they just were really embracing of us being there. It wasn’t at all, oh, well, we have PhDs and we’re smart. They were enthusiastic about our participation. So that was a really positive experience.

Jenni Weaver (04:24):

I agree. And I’ve talked to Andy before about all the anxiety that I felt there, and I think that was pretty fresh from me coming back. Now I can reflect back and think about all the positives instead of thinking about how awful I was feeling while we were there, you got to see firsthand, oh my gosh, Jenny fell apart. But besides all of that, what’s nice is it’s not like people walk around with a tag on their shoulder saying, I have a PhD and I have this and I have that. Nobody’s judging.

(04:53):

We’re all there because we want to learn, we want to engage. It’s an incredible experience. It is overwhelming and there are a lot of people, but it’s in such a good way. And I remember as we were giving bracelets out to people, they’d get so excited and they’d want to put ’em on and get their picture taken, and it was so much fun. I loved it.

Andi Byers (05:13):

I love it. So there’s food there. Yeah,

Jenni Weaver (05:16):

Yeah, yeah. It’s

Cheryl Crow (05:17):

Kind of hard to find sometimes. Bananas. Yeah, different. So the conferences, I’ve been to numerous of these conferences, and I always say it really depends on which site they go to. They rotate between the East coast, west coast, Midwest, like Philadelphia and San Diego are my favorites. They have a lot of good food around them. DC was not the best for food. Yeah. But we went to, when we went to these sponsored events, like the Rheumatology Research Foundation, lunch, we got food, but when we were trying to find our own snacks, we were pretty unlucky. We had the whole quest to try to find literally one banana and we couldn’t find bananas. They were just sold out. Anyway, it was very dramatic. So I’m a foodie.

Andi Byers (06:00):

I’m a foodie, and I’m living vicariously through you guys. And you gave me a great segue because you mentioned that you were at the Rheumatology Research Foundation Awards luncheon. This is a two for question. What was the food? Was it delicious? Was it anti-inflammatory because it’s rheumatology, was it anti-inflammatory? And how did it feel to be a part of that awards luncheon?

Cheryl Crow (06:22):

Yeah, we were both nervous. We had to speak, and so we were kind of having that pre speaking jitters where your appetite goes away, but I think it was chicken and some quinoa. It was pretty healthy, and I actually thought it was really good. And the awards luncheon is where they get these research awards, so basically grants to keep performing research. I mean, it was a strange time. It was, I think one or two weeks after the election. By that point, we knew who was going to be in power and that they were saying that they’re going to do a lot of funding cuts.

(06:56):

And I actually think there was a lot of the researchers, everyone wanted to be positive and celebrate the research wins that had happened and the advances in autoimmune understanding and research and medications. But it was a little bit scary too. I think when we got into longer conversations with individuals, they were like, well, I don’t know what’s going to happen to my lab, my scientific lab, if it’s funded by a source that’s going to be cutting off my funding. So kind of a mixed bag, I would say.

Jenni Weaver (07:25):

Yeah, and I agree with Cheryl. We got in there early as we were prepping and they bring out the salads and the drinks, but who wants to go eat salad before they’re going to get up on stage? Because the last thing you want to do is have lettuce sticking out of your teeth. And yes, to my idea to Cheryl was, Hey, let’s start out with some kind of comedy just because that might help loosen my nerves. It was great. I loved that we did that, and it worked out well. They loved it. They loved the puns, but all I could think is what if I would’ve been standing there with lettuce hanging out my teeth?

(07:55):

Then of course, the meal came and it was chicken and it was salmon and it looked so delicious. But again, I had nerves, and so I ate what I could and it was delicious. There was asparagus too, I think. Yep, yep. There was a dessert. I never got to touch it. I don’t even know what it was, but the meal itself was delicious.

Andi Byers (08:11):

Yeah. Were there any moments during the event that really stood out or inspired you personally where you left and you were like, that lit a fire in me?

Cheryl Crow (08:20):

I think what we ended up doing was we presented, we highlighted a couple of the researchers and said why their work was important to us. And I know I saw it happen to Jenny too right after we spoke, when there was kind of a mix and mingle time for people to talk to each other, the researchers came up to us. We actually weren’t expecting this.

(08:39):

They were like, one of them had tears in her eyes. She, her research is all about pregnancy, and I said, this is important to me. I had a pregnancy 10 years ago with rheumatoid arthritis. It was a planned pregnancy, but there weren’t a lot of solid guidelines and research back then, and it’s already gotten so much better for now who are experiencing pregnancy. And she had tears in her eyes and she was so grateful that we were interested in her research, and it just reminded me that the researchers need to see the faces of the people that are actually helping.

(09:09):

It’s so gratifying for them, and it’s gratifying for us to see who’s helping us. I think so often as patient advocates, there’s a lot of times we vent to each other, right? People vent about this doctor didn’t listen to me and this doctor medically gas lit me, and those are all real. I’ve had that happen and legitimately really difficult situations to cope with, but it’s also empowering to counterbalance that, to remember that there’s also the positives of people out there who are working till midnight in the lab trying to find better treatments for us. So that was the key moment. I guess the woman coming up with tears in her eyes, I didn’t know it was going to touch her. So emotionally,

Andi Byers (09:47):

How about you,

Cheryl Crow (09:47):

Jen?

Jenni Weaver (09:47):

Echo that too. The hugs that we got from individuals afterwards, or even the group at our table, I loved the group at our table. We had fellows, right? And they were so sweet. We had this incredible young man recording the video for us. We got a picture with him and we got to cheer on a couple people at our table as they were getting their rewards and the excitement on their faces. You can feel it and you want to clap and turn to me and be proud of them because this is the future. These are the people that want to help us. They genuinely care and they’re looking at us with care. That means a lot to me to have them look at me like a real person and truly care about me.

Andi Byers (10:25):

So while you were there, you guys sat through some pretty empowering sessions. Jenny, I’d love to hear your thoughts on chasing Zs, the rheumatic disease. How was that session

Jenni Weaver (10:38):

Chasing Zs? It was pretty cool. A girl that I know, she works with AI arthritis. She shares about her illness with lupus. Her name is Layla and her uncle is a rheumatologist, and he was one presenting at the chase and disease with a few other people that I didn’t really know as well. But it was super exciting to hear them talk about how sleep is so important and how it can be related disorders with patients of rheumatic disease, and they went through and talked, but about how important it’s for them to teach us sleep hygiene and sitting there thinking, oh my, yes. Sleep hygiene is such a huge topic that we don’t always talk about.

(11:17):

And does a family doctor talk to you about that as they’re telling you you need to see a rheumatologist? Probably not. Did my rheumatologist ever talk to me about it? Not really. It was actually a life coach that talked to me about it, and once I started putting in better sleep hygiene, I noticed I started feeling a lot better and a lot less pain. I was controlling it better. It really resonated with me and made so much sense. I wanted to record every second of what they had to say.

Andi Byers (11:43):

Cheryl, you were a part of a session. Was it called addressing ableism from the perspective of the patient? Can you walk us through some of those key points?

Cheryl Crow (11:52):

It was great. I love talking about ableism and I didn’t myself hit this idea, so you have to apply to be a speaker typically, but someone else nominated me, which was really a honor, right? Someone said, I think I’ve heard her talk about this on social media and I think she’d be a good speaker on this topic of ableism.

(12:13):

So if you haven’t heard of what ableism is, honestly, I don’t think I had heard until I was on social media, but it’s discrimination against people with health conditions or disabilities. Racism is discrimination against people of different racial backgrounds. That’s what ableism is against. People who either have a visible or invisible disability or health condition, they always ask to share my experience as a patient and as a occupational therapist, I pointed out basically there’s a lot, there’s some obvious external overt examples that are very, they’re very obvious.

(12:48):

Sometimes I’ll get a comment on a TikTok video, and I’m using not a mobility aid. I’m actually usually because my small joints are more affected with rheumatoid arthritis than my big joints, so I don’t have any issues with mobility, but I have issues with my fingers and I’ll be wearing a compression glove or using adaptive equipment. Someone’s like, you’re ugly. You shouldn’t use those things. You’re weird. Obvious examples were you are less than because you have a disability or health condition.

(13:15):

But the ones I was more interested in is the ones that are more subtle. They’re things like the pressure to define a normal life as just a healthy or able-bodied life and the pressure that we as health professionals, I’m both a health professional and a patient, so I feel if I’m an interpreter sometimes talking to doctors or other health providers about this stuff, and a lot of times they’ll say stuff like, well, you could have a normal life with these conditions.

(13:44):

And they don’t realize that’s a subtle form. Well, when they’re saying, yes, normal life is a catchall that is saying a life that is not ruled by chronic pain or your disability is not going to be the focal point of your life. You can still do the things that you want and love to do, and that’s a really positive message. But we have to be careful, right?

(14:07):

I said this a lot more eloquently. I had all these slides and stuff to keep me on track, but basically saying when we say the normal life that most providers are talking about in rheumatology is they’re defining normal as healthy or able bodied. I actually use this example when I was pregnant, and people are like, oh, as long as it’s healthy. But okay, so what if it’s not healthy? What are you saying? My kid’s going to be less lovable.

(14:31):

They’re not healthy, obviously. They’re just saying we all wish and desire. I mean, I desire to be have good health because having poor health is painful and I don’t like pain, but it’s not a choice a lot of people get to have, and we should still be inspiring our patients to say that you can have a good life instead of saying you can have a normal life. Do you know what I’m saying? That kind of thing.

(14:53):

So again, sorry, this is not the most coherent, but I also shared my own personal journey of feeling this pressure to overcome my arthritis or have the hero’s journey where I climbed the mountain of my illness and then surmount it. I’ve even been asked when I’ve shared my story publicly, someone said, can you share how you overcame it? I’m like, people don’t have a good script for what a chronic illness is.

(15:16):

I’m not overcoming it. It’s going to be here until there’s a cure, but I’m living with it. I’m living alongside it, but at first I felt like I was failing because I didn’t overcome it or heal it or beat it or defeat it, or I’m an arthritis warrior. There’s all these subtle pressures we put on people and the ways that we as health providers encourage or reward patients for improving constantly. It’s much more complex relationship than it seems at first.

(15:49):

And one last little point I’ll say is a phrase I hadn’t heard until I was on social media a lot, which is called inspiration porn. I hope it’s okay to say that, but it’s not actually talking about real porn. We’re talking about the idea of pictures of a person in a wheelchair and it’s the only disability in life is a bad attitude, and if they can do it, what’s your excuse?

(16:09):

And it’s the using of these images by able-bodied people to make themselves, to force the disabled population or people with disabilities to conform to the able-bodied standard instead of saying, there are many ways of having a beautiful full life. Not everyone who is a wheelchair user is having a horrible experience, or also they’re not only worthy if they’re able to do five pull-ups in the wheelchair. It was a really great session, and there was mostly allied health providers, meaning non doctors in there because there was a bunch of other high profile sessions at the same time, but there was some great social workers and other people talking that had great questions and stuff like that too.

Andi Byers (16:51):

You were also part of another session. It’s not just joint pain.

Cheryl Crow (16:55):

Yes.

Andi Byers (16:55):

Tell me a little bit more about that.

Cheryl Crow (16:57):

Yeah, that one was a little more straightforward, but I’m going to give Eileen Davidson, our fellow of rheumatoid arthritis patient advocate friend, some credit here. She came up with the idea to do this session as a multidisciplinary session with a rheumatologist, and the idea was people and even health providers tend to just look at the joint symptoms of conditions like rheumatoid arthritis, and I helped a lot on this. I had done my own podcast episode on this too, and divided it said, let’s have a whole hour long session on just the symptoms that are outside of your joints.

(17:30):

So we divided it into fatigue and then brain fog or cognitive dysfunction, and then mental health, so concurrent anxiety and depression that are very prevalent in the rheumatoid arthritis community and sleep issues, sleep disruptions. We had a really amazing sleep specialist from the University of Michigan who’s done amazing research in the effect of lack of sleep on inflammation in your body and how, like Jenny mentioned earlier, getting adequate sleep can be so positive for your inflammation levels.

(18:04):

And we also talked about the importance of interventions to help reduce pain, fatigue and brain fog. So things like exercise and nutrition were two of the big ones. So it was great. People were really receptive and that one was pretty packed with doctors and allied health professionals too. So it was literally DR just telling them to just ask your patient about other symptoms other than joint pain. It’s so simple, but often we’re only asked, oh, how are your joints? How is your finger? Can I feel your finger? Can I feel your knees? And it’s like, okay. Can I also tell you about the fatigue and how that’s affecting my quality of life?

Andi Byers (18:39):

So both of you have been these super advocates. You guys are phenomenal in the advocation space and even superheroes like known in the community superheroes for the rheumatology community. How do you see these kinds of events and these discussions shaping the future of care and support for people living with chronic illnesses?

Jenni Weaver (19:00):

Honestly, I feel like it’s going to continually help patients feel seen and cared about, which is crucial, but it’s also so exciting to see that they actually are working really, really hard. We don’t see it. We don’t see all the behind the scenes things that they are doing to make our lives better. And Cheryl, I know that you got to go to a few more sessions than I did. I was there a very limited amount of time, but I went with the Arthritis Foundation to the post a CR. There were people there that had either been to a CR or they got to watch it online. They were presenting on it, getting to hear more. It was amazing. And one of the gals was so passionate, in fact, I was going to give you her name. I asked her if she’d be on the podcast.

(19:46):

She was such a gifted speaker and passionate about what she was talking about, Andy, it’s one I told you about too. And it was about pots and the person that originally had put this together and presented it at a CR was saying, if you in your professional settings are not asking your patients about this, and if you are not diagnosing this, there’s something wrong because this is happening more than any of us want to admit. So stop trying to direct it to a different physician. You should be diagnosing this. You should be learning more about it. And that struck a chord with me and I don’t even have pots.

Cheryl Crow (20:18):

That’s so funny you say that, Jenny. It’s striking a chord. Yeah, same with me.

Andi Byers (20:22):

I was like it striking a chord with Jenny was very beneficial for Andy because it was helping me connect the pieces as to why I couldn’t swallow. That is one of the comorbidities that come with, you have pots and if your pots is out of control, the dysphagia, and that was what has been happening to me for almost three years. I had been getting kicked around for almost three years where they’re going, it’s not that. It’s not that.

(20:45):

And then today I got to see my cardiologist and I’m like, is it this? And he says, you’re my 1%. He’s like, I treat pots all the time, but I have never come across someone who has lost weight like you, who lost their hunger cues, who is having the digestive upset and all of the things. He said, you are my 1%. I don’t have the answer, but I’m committed to helping you find the answer because I don’t think anybody has the answer for the 1%. We don’t have the answer for the 99.

Cheryl Crow (21:15):

Was that the one called stirring the pots long and beyond?

Jenni Weaver (21:20):

Yes. Okay. Did you get to go to that one?

Cheryl Crow (21:23):

Yeah. That’s so funny because that was the one I had identified as a really interesting as well. They were also talking about, no one knows for sure exactly what is happening with long covid at the cellular level, but apparently they’re finding auto antibodies with people with long covid at rates higher than people without long covid. So they’re theorizing that it could be an autoimmune process where your immune system after having covid for some people is mistakenly attacking your healthy tissues.

(21:52):

I think that that is a really fascinating development and just in trying to keep an eye on it to see if that’s going to lead to maybe treatment for long covid, because I don’t have long covid myself either. I don’t have a diagnosis of pots. I do have for sure orthostatic hypotension where when I stand up I will get lightheaded and stuff like that. So which is just one vent symptom of pots from what I understand. But I just think so many of us are living with comorbidities. It’s not just rheumatoid arthritis. It’s not just a Sjogren’s or pots. It’s like a lot of us have multiple overlapping conditions, so the more we can learn about those comorbidities fully managing those can help us improve our other conditions too.

Jenni Weaver (22:37):

I’d pulled up my slides from some of the ones that you and I presented on Cheryl,

(22:42):

If you don’t mind, Andy, I want to dive into one of the people that we shared on, because I wish she had several sessions, but I couldn’t make it to any of them because they were either the days I weren’t there, I wasn’t there, or I was already committed to something else. Her name is Christina Charles Showman. I wish that she was on socials because I feel she would be a wonderful one to watch and glean from her research. It’s about approach to managing rheumatoid arthritis in the setting of cardiovascular disease.

(23:14):

That one has been so important to me. I talk about this all the time, but I have a cholesterol issue that they’ve never really been able to figure out why. Because even when I was 98 pounds, I had high cholesterol, so they were like, okay, it didn’t matter what I was doing. It didn’t matter what I was eating. It didn’t matter if I was exercising. My cholesterol was sky high. And so to get to hear from her personally at Sessions would’ve been amazing, but I was glad to at least be able to read about it and to also share about her award at the luncheon.

Cheryl Crow (23:45):

The other thing, just if anyone listening has lupus, I don’t know if you might’ve heard this, but the American College of Rheumatology, one of their jobs is to put out these clinical guidelines, which are documents that are updated typically every five years that are what the doctors use to determine what’s the state of the art or what’s the latest evidence point to as the best interventions. So these were updated in 2024 lupus specifically, and there was a lot of chatter in the medical community about there being maybe some new medications out there that I don’t have lupus, but they were talking about especially the importance of triple therapy, and there’s a couple you can look these up. This is all public information. It’s just, it’s a lot of the science stuff that’s kind of way too many syllables for me, but that was exciting to see some updated research there for lupus.

Andi Byers (24:43):

So were there any other sessions or topics that you’re just like, Hey, everyone needs to know about this Outside of the ones we just talked about?

Cheryl Crow (24:52):

I think I would say that for brain fog, I think that, or cognitive dysfunction, that there are a lot of people that were really resonating with the idea that we need better and more studies on the role of inflammatory diseases like rheumatoid arthritis, how those affect your brain, because brain fog can sound like such a acute thing. You’re like, oh, it’s brain fog, like la la, little cloud. But it can be debilitating. It could lead to you having a hard time focusing on, and maybe even safety issues with driving, potentially taking care of children, being able to remember that there’s something stove top. There was a real call to action there. Second thing is I went to a session that was from a chronic pain researcher, Dr. Afton Hassett, also coincidentally from the University of Michigan. She has a great book called Chronic Pain Reset, and she’s really great.

(25:50):

I know sometimes it seems like these things are so simple, but in terms of, okay, what’s the takeaway? Someone listening to this podcast episode could take, she talked about the importance of, she called ’em scheduling positive activities, right? Is that what you Yeah, yeah. Positive activity, scheduling. It’s so simple sounding right, but even if you’re in a lot of pain to say, what’s something that can bring me joy today? What’s something small? Is it calling a friend or is it listening to music? Is it smelling something that I really love putting some lavender in my bath or something like that? I thought that was a great idea, and it’s something I’ve started thinking about like micro moments, small little moments of joy trying to schedule those in the day rather than just waiting for them to happen. Did

Jenni Weaver (26:34):

You pick up her book?

Cheryl Crow (26:35):

Yep.

Jenni Weaver (26:36):

It on my desk. I sure did too. And my husband was like, oh, great. Another chronic illness book. It’s great for anyone listening. I actually added it to my Amazon Spoonie list, so if you want it, I’m not affiliate, I don’t make money off of it, but I love sharing my list of all my favorite finds, which you can find the beautiful Andy Buyers on there. I have quite a few of your books on there too, Cheryl. If you write a book, you’re going on. Okay.

Cheryl Crow (27:02):

It’s on my to-do list, my life to-do list.

Andi Byers (27:04):

Hello ladies. How can our listeners get involved in advocating for more awareness and resources for Rheumatic Disease? Do you have any favorite organizations that they could support or specific actions they could take to just start the conversation?

Jenni Weaver (27:19):

You can look at people like Cheryl, like I did a few years ago and be, oh my gosh, I can never be one of them. They’re so famous. I can’t do this stuff. That’s what we do. That is seriously what we do. We sit on the sidelines, we put you on this pedestal, and you’re a real person. You are, and you’re a fun person. But what you need to do and you want to advocate is just start using your voice. You have to start somewhere. If that means starting an Instagram account that is set up for your specific conditions and sharing about it and reaching out to people, that’s a good start. But then when you want to start diving into other things, don’t be afraid.

(27:55):

I’ve asked Cheryl questions a million times. I’ve asked all kinds of other people questions about what they’ve done, what they enjoy, who they like to work with. It’s okay to ask those questions because not all these organizations will just jump into your feed and say, Hey, want to work with me? It doesn’t work like that. A few of them do. The room champion thing, they reached out to us and it was such an, yeah, that’s right.

(28:20):

It was such an honor, but it doesn’t always work like that. So what I would say is just start somewhere and don’t be afraid to talk to people.

Cheryl Crow (28:27):

Yeah, I love that. I think it’s the kind of two advocacy paths that I see is there’s three kind of entry points for advocating in near chronic illness space, and one of them is becoming involved in legislative advocacy. Every nonprofit that I know of for specific chronic illnesses, whether it’s like Dysautonomia association or arthritis foundation, creaky joints, they all have a system for onboarding people into advocacy. You don’t have to figure it out on your own.

(28:58):

In fact, I don’t get nervous easily, and I was really nervous the first time I talked to an elected official because I don’t know how the government works. I don’t remember, but they’re like, literally, it doesn’t matter what you know about the government, they just need to hear your story. They need to hear how insurance barriers, for example, have affected you and your quality of life if you’re really a government geek or be into that kind of thing.

(29:20):

I have been flown out to Washington DC through some of the donation dollars to these foundations. You don’t have to do it all on your own, so that’s really cool.

(29:29):

The second one though is being I’m my heart teacher theater person, so I love volunteering at in person or now virtual events, occasional, or for example, in Washington state where Jenny and I both live, there’s an annual family camp for kids with arthritis and juvenile inflammatory like art disease. They’re always looking for more volunteers. So you’re going to do anything from collect, baking, painting, decorations for the room that they help hold the summer camp in the rooms, or there’s so many little, these are all grassroots organizations. From my experience, they could always use a extra set of helping hands.

(30:11):

So the third thing is that for awareness, you can just start where bloom, where your planted start, either if you’re a social media person like I am and you identified that you’re comfortable with it, start sharing about your condition there, connecting with other patient advocates, or if you want to, gosh, I mean there’s so many creative ideas. I did the jingle bell run for arthritis in Seattle, and there was a whole, it was so adorable. There was a whole lacrosse team of eight-year-old kid, and it was the kid wants more people to know that kids get arthritis too, and they made a team for the jingle be run, which the proceeds go to the arthritis Foundation. So just be creative and have fun with it. And that will make it more sustainable for you. Exactly. A lot of these have

Jenni Weaver (30:56):

Websites or you can find them on Instagram, TikTok, all the things, and just messaging the person that runs that account. Most of ’em are very engaging, and the websites even have a spot where you can say, I want to be a volunteer for the Arthritis Foundation for the one local. To me, I’m near Oregon, but I’m still in Washington. I don’t get to go to the in-person events with you, but I can hold a virtual one. Okay. Those are great things to do too. The Psoriasis Foundation that’s close to me in Portland, they’re very active and I do stuff with them as well. Just reach out doesn’t hurt.

Andi Byers (31:31):

Right. So last final question is does Andy deviate, does she go robe for this last question? Does she go robe for this last question? Do I want to do that to Cheryl Crow because I’ve been playing.

Jenni Weaver (31:49):

Yeah, do it. Do it.

Andi Byers (31:50):

So you got to have this experience. This is Cheryl’s not her first experience with the convention. What is your message of hope? So if you had to talk to you early in your diagnosis and in your darkest moment of your diagnosed journey trying to figure it out, what message of hope or resilience do you give your future you about where rheumatology is going?

Cheryl Crow (32:14):

Yeah, that’s a great question. I always think of hope as the double-sided coin and so on. The one side is every year there’s more scientific discoveries, there’s more hope for cure. That’s the end game is curing rheumatoid arthritis and autoimmune diseases. On the other side though, is that I remind myself that my life is not perfect. It’s not going to be perfect if there’s a cure for rheumatoid arthritis.

(32:41):

So there’s also the idea that I don’t want to hinge all my hopes for a good, beautiful life on this idea of a cure because there’s always challenges in life. There’s always going to be things that maybe stress me out. Certainly eliminating rheumatoid arthritis from my life would get rid of a specific set of issues. But I think this is just maybe just my point of view in general, but so I’m very excited about the hope for a cure, I think for certainly objectively closer than ever to a cure for rheumatoid arthritis and autoimmune conditions in general.

(33:12):

But on the other hand, there’s also always hope in the moment for living a good life with whatever challenges are coming your way and finding, again, those pockets of joy and finding those micro moments of positive activities. I think that really stuck with me. Even if I have, whether it’s your psychological pain, physical pain, whatever, that I feel empowered to turn towards joy and turn towards a full and beautiful life. So that’s my message. That’s my nine different thoughts in one. Do you want to say one too, Jenny? I’m supposed to answer the same question. I’m sitting here staring at

Jenni Weaver (33:50):

Andy. Yeah,

Andi Byers (33:52):

A hundred percent. Yeah. I was just staring at you back waiting on you to answer the question.

Jenni Weaver (33:56):

So this is where I admit that I’m having a brain fog moment and I don’t even remember the question. So you know

Andi Byers (34:01):

What? We have that. So you talking to younger you, a message of hope and resilience about the future of you managing your rheumatic situations in the future of rheumatology, what do you tell you young you?

Jenni Weaver (34:16):

Well, first of all, I would tell young you, young me, I would say your life’s going to be a little different, and that’s okay. It’s going to scare you. You’re going to be a mom taking care of three middle schoolers, and you’re going to think your life is over and you can’t do the things for those kids anymore, but you still can.

(34:33):

And with this changed life, you’re going to meet incredible people, lifelong friends, people that are going to change your life and that will make you thankful. It’s crazy to say, I know I sound crazy to people that I would not change my life because I don’t like pain who likes pain, but it’s made me who I am today. And for that, I’m grateful. I would never take it away. I like the compassionate person that I have become because of what my life has done to me. It is a beautiful thing that I would never take away because I am who I am and I love you guys because of it.

Andi Byers (35:09):

Love the slowness that my life forced on me, the stillness. I used to be so mad about it. I appreciate the quiet moments. I appreciate the stillness. I appreciate rest. We fight naps as teenagers and look forward to it in your forties. Okay? I love a good juicy nap, so I love a juicy nap. Well, ladies, thank you for spending some time with us and for taking the time to share your, I’m going off script, so this is me and you, right? I appreciate what you do, and if nobody tells you today that they see you, I see you. And I am glad that you do what you do because what you do gave me my voice, and it’s the reason why I do what I do and why I can do it with a big girl voice.

(35:56):

And when I don’t feel like I’m strong enough, I have amazing women like you that go, Hey, I’ll hold your hand and here’s a spoon where I went to this thing, and this may help. I am grateful for you and you guys are more than champions to me. You’ll always be more than champions to me. So with that, y’all, I done got sweat from my eyeballs, and we’re going to go ahead and wrap this up to everyone that is listening. Please stay tuned for more episodes. And remember, it may get dark, but you’re not alone. You have some amazing sisters that will just love to hold your hand and send you a virtual hug. We are in this together. Until next time, don’t forget your spoons.

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