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Advocacy, Patient Stories, Podcast

Elevating the Patient Voice in Rheumatology Research: Cheryl and Jen’s Stories

2 months ago
43 min read
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Summary:

What is the role of the patient voice in scientific research? Rheumatoid arthritis patient advocates Cheryl Crow and Jennifer Weaver reflect on their experience as patient partners at the Rheumatology Research Foundation’s annual scientific meeting. They share exciting trends in rheumatology research that will help improve quality of life and develop better targeted treatments for rheumatic disease. 

They also discuss the importance of involving patients at all levels of research, and shared simple ways that listeners can get involved. Additionally, Cheryl and Jen reflected on the importance of social support in their personal journeys living with rheumatoid arthritis, and the importance of support groups in navigating life with chronic conditions.

Episode at a glance / Main Themes: 

  • Patient Advocacy and Empowerment through Involvement in Research
  • Rheumatology Research and Innovations
  • Personal Experiences with Chronic Illness
  • Challenges in Quantifying Pain and Symptoms: what’s wrong with the current pain scale?
  • Tools and Strategies for Living Well
  • Community and Support

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:

Jennifer Weaver 

As the host of “My Spoonie Sisters,” I bring a voice to the often-unseen world of living with Rheumatoid Arthritis, Psoriasis, and many other chronic conditions. I am a volunteer for the Arthritis Foundation of Washington, AiArthritis, Cards 2 Warriors, a #RheumChampion for the Rheumatology Research Foundation, and a moderator for a Chronic Illness Mindset Support Group. This work brings me joy as I serve our community and support those living with autoimmune diseases like mine.

Living with chronic conditions like RA and Psoriasis isn’t easy, but it’s taught me resilience, empathy, and the power of community. Our podcast aims to uplift, educate, and empower fellow spoonies everywhere through heartfelt conversations, personal anecdotes, and expert insights.

When I’m not behind the mic, you can find me advocating for chronic illness awareness, spreading positivity on social media, and sharing my journey towards holistic wellness. Together, let’s turn our struggles into strengths and our pain into purpose. 

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen 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:

Cheryl:  00:00

Yeah, I’m so excited to have Jen Weaver on the podcast for the second time. Welcome, Jen.

Jen:  00:05

Hey, how are you?

Cheryl:  00:07

Good. How are you doing?

Jen:  00:08

I’m doing well. Thank you for having me. I’m so excited.

Cheryl:  00:12

Yeah. And since we last recorded, we’ve actually met in person, which is unusual. Most of the people that I have had on the podcast I have never met in person. So, we’re going to talk a little bit more about that’s your, what do you call it, I was gonna say spoiler alert. That’s your, like, hang in there and keep listening so you can hear how we met. But first, can you just give a quick intro like where do you live? And what is your relationship to arthritis?

Jen:  00:42

Okay, so I live in a little town called Kalama, Washington. It’s actually Hawaiian. And that’s my fun fact is, yeah, it’s Hawaiian. It’s named after — I don’t know what, was he a king, was he a chief, Kalama. And so, that’s my fun fact. We do a lot of Hawaiian events down here. It’s, I love it. It’s super fun. But for those that are not familiar with where I am, I am south of you, south of Seattle, north of Portland.

Cheryl:  01:18

Nice. Yeah. Somewhere between Seattle and Portland. Yeah. So, we’re both in Washington State. You know, on the previous episode we had you on, you shared a lot about, you know, your diagnosis story. And, you know, unfortunate experiences you have with medication side effects. And you know, that’s a long story. But just for anyone who maybe hasn’t listened to that Episode 98, ‘How to find your new normal with rheumatoid arthritis’, and if they haven’t listened, maybe just can you give a little synopsis of your diagnosis story?

Jen:  01:50

Yeah, absolutely. So, the quick version is around 2010 and 2011, I was having some issues with my left knee, and it started out with just the one thing, but it progressively got worse. And eventually, in 2012, I was diagnosed with rheumatoid arthritis. And along that fun route, I had some allergic reactions, one of them being the most extreme. And that was an allergic reaction to the TNF inhibitors. I no longer can have them. It caused me to get a pustular psoriasis effect, which I now live with. And it’s a lot of fun. Just kidding. It’s not fun. But if you don’t want to look at something nasty, do not Google pustular psoriasis. But if you’re into that kind of weird stuff, go ahead, have fun.

 And so, that happened in 2017. You know, it’s been kind of a long, fun journey. And, you know, I wouldn’t change a thing. And I know that’s crazy to say, but I would not change a thing because it’s made me who I am today. And I think it’s made me just a better person and a better friend a better support system. And hello, it’s brought me people like you into my life. I’ve met so many amazing people, and none of that would happen without it. So, that’s my quick version. 

Cheryl:  03:10

Wow. No, that’s really powerful. And I mean, I struggle with that question like, you know, would you, if you could choose to go back and like not have, you know, your medical experiences, would you? It’s such a complicated question, you know, to answer. 

But I could definitely love, like, acknowledging and feeling gratitude for all the positives that it has been, you know, has brought to my life like people like you and our other connections we’ve made in the in the spoonie community, which if you’re brand newly diagnosed, ‘spoonies’ is kind of like a term for other chronic illness warriors. From Christine Miserandino, lupus inspired the ‘Spoon Theory’, so highly recommend checking that out. But one, before we get into our main topic of the day, I would love to hear, you know, what’s a typical day in the life for you managing your conditions?

Jen:  04:06

Wow. That’s a big question. 

Cheryl:  04:08

Yeah. And/or just a typical day? Yeah. Someone asked that the other day. And I was like, I have a hard time answering that. But I thought that’s something that a lot of newly diagnosed people want to know. It’s like, what is a typical day in the life, if there is a typical? 

Jen:  04:19

Absolutely. And I think, you know, there was a point where I was asking the same thing, because, you know, when you’re newly diagnosed, you look at people like you, you look at people like me, and you think, “Wow, you are so optimistic. You’re so put together. How do I get there? What’s your secret?” 

And the secret is, there’s not really a secret. It’s a lot, of it’s a lot of time, honestly. It’s working with our doctors to find the right treatment plan that works for us, you know, and for so many of us that is different. What works for you is not going to work for me. And what works for me might not work for you either. So, you know, it’s taking that time to hone down what is going to works best for me. 

But it’s also learning our bodies. And I think, for me, that took years to learn what kind of things I need to avoid, and what kind of things are great for me. Because pre-diagnosis, I wanted to be on a roller derby team. [Laughs] And so, looking at that now and it’s like, wow, that was that was a pipe dream. That was crazy. I don’t know what I was thinking. 

But, you know, a day in the life of me where I am that now it’s having that combination that’s working well for me. It’s waking up in the morning at a time that I prefer. You know, because sleep is; medicine movement is medicine. Those are two things that are big for me. And if I don’t get enough sleep, you’re not going to like me that day. 

Cheryl:  05:45

Oh, my gosh. I have my sleep diva mug I printed for myself. It just says ‘Sleep Diva, Interrupt at Your Own Risk’. And I tried to figure — I tried to set up an Etsy store and then I got all very overwhelmed and ignored it. So, anyway, but yeah, you’re, I resonate with that a lot. Sleep in particular.

Jen:  06:02

Yeah. They’re really important, you know, and I think I foolishly thought they were going to give me a medication. And then, I was going to wake up and feel like me again. It doesn’t work that way. It doesn’t work that way. 

Cheryl:  06:14

Some people get that. But a lot —

Jen:  06:16

The lucky few. Yeah, the lucky few. But, you know, I probably feel like I’m the closest to remission I could possibly could be in right now. So, most people don’t even realize I’m sick. And that’s cool. I’m okay with that. But I do need plenty of sleep. And then, I need to make sure I’m moving. If I’m not moving, I’m going to be more sore, I’m going to be more cranky and more miserable. 

And so, making sure that I’m implementing those into my day, every single day, along with my supplements, and self-care. That’s definitely a big day in the life of me. But you know, my kids are grown, and so don’t have to get kids off to school anymore. So, it’s kind of getting up whenever I feel like it, checking emails, checking in on Instagram. 

Cheryl:  07:04

I was gonna say that’s a lot. You’re so productive on social media. Again, I know we only see, that’s my perception looking in from the outside, you know, and that is important. In occupational therapy, we are obsessed with just calling everything occupations, we call them meaningful activities. And so, that is one of your, it seems, meaningful activities is connecting with others through social media. 

Jen:  07:28

Absolutely. And I think a lot of it came from feeling scared and alone in the beginning of my journey, because I had so many friends that did not understand what was going on with me whatsoever. And so, I never wanted people to feel the way I was feeling. And so, I’m big on community and connection. And so, you know, as I go on with my day, I sit down and I work on some content ideas when they come to me, and a lot of it comes at night, you know? 

I’m sitting down, relaxing with my mother-in-law, and we’re watching a show together and I’m over there, I’m on Canva and designing and coming up with whatever comes my way. And so, yeah, I guess that was my long-winded version of a day in the life of me.

Cheryl:  08:17

No, I was just, you know, reflecting as you’re talking about, you know, the importance of social connectedness. And the American College of Lifestyle Medicine, which is really fantastic, I’ll put a link to it in the show notes. It’s a multidisciplinary association, kinda like American College of Rheumatology is Association of Rheumatology Professionals and the ARP is for like non-physician practitioners, that lifestyle medicine, the American College of Lifestyle Medicine, also ACLM, they are extremely multidisciplinary. 

There’s physical therapists, occupational therapists, nurses, health coaches, personal trainers, doctors in every specialty that might see people who, for whom lifestyle interventions, like you mentioned, movement, sleep, and stress management. And interestingly, so they have these six pillars. This is gonna relate exactly to what you were saying about social connections on social media. 

The six pillars of lifestyle medicine include social, positive social connections. So, these are considered one of the most important, six most important things along with a whole-food, plant-predominant eating pattern. Again, this is going to be a little bit customized to each individual person, for sure. Nutrition is very variable. So, nutrition, physical activity, sleep, stress management, avoidance of risky substances — that’s just on there — and positive social connections. 

That kind of goes without saying, but actually, you know, I want to recognize that that’s  going to help people’s chronic illness. And so, you know, that I just think it’s — that your day in your life really touches on a lot of those things, you know? So, kudos to you! A friend of American College of Lifestyle Medicine, I’m a member but I don’t do a lot other than just to read the stuff that they put out. It’s great. So, thank you. Thank you for answering that question. I think it’s hard to summarize. 

But yes, speaking of official organizations, you and I got to meet in Denver, in the end of May or middle May for the Rheumatology Investigators Meeting through the American — oh, no, Rheumatology Research Foundation. Okay. I was gonna say something wrong. I have so many acronyms in my head.

Jen:  10:40

Yeah. And it’s such a mouthful, too.

Cheryl:  10:43

Yeah, yeah. And so, I would love to know, like, how did you become, initially become involved in the Rheumatology Research Foundation?

Jen:  10:52

Okay, yeah. So, I think it was about two years ago, maybe longer, when I was sort of newer in the Instagram realm of the spoonie life. And whoever runs their socials over there reached out to me and asked me if I wanted to be a Rheum Champion. And I was sure, okay, what does that mean? Please tell me more. And they kind of gave me the rundown about what their mission is with it. And I was like, yes, that’s me. Totally, I’m game. And, yeah. So, that’s how it first started. And then, you know, like you, a couple months ago, received an email with the invite go to this for the first time. They included patients. And that was so exciting. I was thrilled to meet you in person. And, of course, the others as well, our little tribe. It was amazing. 

Cheryl:  11:44

Yeah, yeah, it was great. They invited five or six actually, because we had a few last minute people that they invited. And I do want to say that if anyone wants to become what’s called, like, they have an official program called Rheum Champions. It simply is — the only requirement to become part of this overall kind of community is to share, is to ‘apply’, quote, unquote. And the point of it is to amplify voices of patients and caregivers and let others know they’re not alone. 

And when you join the foundation, I’m reading from the website, they may occasionally share or repost your content with permission and reach out to you about speaking about your journey with the media. So, this is just for anyone who’s wanting like a baby step towards becoming more involved, and sharing your story more publicly once you share. And it’s just a really quick five-minute application form. They then we’ll follow up with you and share your story on the Rheumatology Research Foundation’s site. 

So, I also got contacted on social media. And, you know, when they invited me to the Research Investigators Meeting, I was like, what is an investigator meeting? Even though I’m so involved, like, in the — oh, I should say really quick, the Rheumatology Research Foundation, it’s affiliated with the American College of Rheumatology, and so, and that’s the official professional association for the rheumatologist doctors and rheumatology health providers. So, the whole goal of it is just to advance, you know, advance patient care. 

And part of that is through research. It’s in the name. But also, part of it is through addressing the workforce shortage, which a lot of patients, if you’re listening, if you’ve had a long wait time to see a rheumatologist, you live in a rural area that doesn’t have a rheumatologist, that’s part of the issue that they’re trying to solve through giving grants and funding to the fellows. But the investigator meeting was for all the people who they’ve given grants to for research to give updates on their research. So, what were just some of the highlights to you? I mean, there was so much information, I felt like I was drinking from a firehose. 

Jen:  13:57

Yes, yes. And I, you know, I want to tell people, too, it’s kind of funny, we both had our laptops up, and we’re working on things. We’re taking all these notes and taking pictures of slides and trying to find out what we can share. And it was so exciting. And I felt like I couldn’t soak in enough. Some of them went over my head, but it was just exciting, because they truly care. They want to help.

 And so, okay, I pulled up the page that I think meant the most to me. And it was, it was talking about cholesterol, because that is an issue for me. And I’ve had to go to the lipid clinic in Portland and we’re trying to figure out why the medications aren’t working to lower my cholesterol.

 And so, it was interesting hearing them talk about it, and the oxidative stress and HDL or complex particles and — do you remember this one? And talking about PON1 and, yeah, I’m looking over it now. And I’m like, okay, some things make sense. But they’re looking at targeted therapy. And I love that. And they have that for lupus, they had that for RA, they had one for osteo. I mean, they’re really trying hard to come up with these targeted therapies that are really going to help us that much more.

Cheryl:  15:18

Yeah, absolutely. And it was, I think, one of my takeaways, I’m looking at my own post that I made, to be honest, because I can’t remember it off the top of my head. But was that, you know, that research is a long process. Like, research is not a short, quick thing. There are no simple answers in rheumatology. 

So, learning that, you know, sometimes researchers put all this work and years into something, and they discover that their hypothesis wasn’t correct. And that’s sometimes just as important to know or to understand as when their hypothesis, you know, was correct. Because then, you know, okay, well, let’s not waste our time going down this road. You know, one of the things I thought I really resonate with one talk from Dr. Betty Hsiao — I think her name might be pronounced ‘Hsiao’ — from Yale, she talked about ‘Using tailored patient videos to overcome barriers to treat-to-target’. This was like music to my ears, because that’s what I do most of the time is using videos, you know, for social media videos, specifically for patient education. 

And basically, the takeaway was that patients when they’re making medication decisions and general health related decisions in the year 2023, 2024, they wanted to learn not only from their doctor and registered health providers, but they want to learn from other patients. And I just, it was almost therapeutic hearing her respect the patient voice so much and not — like a lot of doctors have said, “Oh, the patients just want to go on social media and like, they’re gonna get all this misinformation, and they hear all these bad things.”

 It’s like, wait a minute, let’s take the fact that patients have a desire as human beings to learn from another human being who’s been there. And let’s then, you know, she’s literally at an Ivy League school, right? So, she’s like, the most highest, the highest center for learning and say, we’re going to examine that need and explore it in a real, like, we’re gonna respect that that’s how human nature is. And then, no matter how good your doctor is, they’re not going to take the place of another patient’s voice. But let’s curate patient stories to make sure that they’re accurate and not misleading and present that to patients. Sorry, I’ve just gone on a tangent. But yeah.

Jen:  17:30

I’m so excited about that one, too. And I was like, okay, can I raise my hand, like, can we be part of this, please? It’s exciting. And it’s true. Because a lot of newly diagnosed people now, that that’s what they’re doing, they’re going to social media. And they’re looking for these people that have lived the life that they’re now looking at. 

Because yes, our rheumatologists, our doctors, our care team, they can give us all this information, and they can help us, but they’re not the ones living it. And so, at the end of the day, it’s not bashing on them, we need them. But we also like talking to people that live it, and feel it, and understand it. 

Cheryl:  18:09

Yeah, a hundred percent. You know, there was, there was some — yeah, the event covered certain topics that were like really detailed. Like, one of them that I was fascinated by but I didn’t understand all of it was like circulating monocytes may contribute to — or ‘Transcriptional profiles of circulating monocytes and their association with pain centralization and DMARD response in rheumatoid arthritis’, which centralized pain is something we’ve talked about on the podcast before, but just in case you haven’t heard it, the episodes, that’s when if you might have a rheumatic disease and ongoing inflammation, like from rheumatoid arthritis, and that’s the pain you’re experiencing might partially be or may completely be from that active inflammation. Centralized pain is when there is no active, known, or visible process that’s going on in the site at which you’re feeling pain, but your brain is interpreting pain nonetheless. 

So, it’s real. It’s not, quote unquote, ‘all in your head’, but they’re trying to figure out what how do we distinguish it and a person who has potentially ongoing inflammation and pain? How much is the pain of that pain from that inflammation versus centralized pain?

 So, this is one that’s very much in progress, but they were, you know, it can answer that question a lot of patients ask, which is, “Why is my pain persisting even when my, quote unquote, ‘my bloodwork looks good’, ‘my imaging looks good’, ‘my inflammatory markers are good’.” So, this study, again, it’s still looking, it’s still not you know, conclusive yet, but they were looking at those, again, the circulating monocytes. And also, they looked at quantitative sensory testing, like pressure pain thresholds, temporal summation, and conditioned pain mod deletion. These are just notes I was taking taking. 

I was just really great that again, instead of saying, well, like some patients have told me, “Well, my doctor said my inflammation markers are good. And so, therefore, they can’t do anything about my pain. We don’t know what it is.” I can actually say, okay, well, maybe let’s explore why does this happen. Maybe if we can find a solution to it, it could have huge implications not just for rheumatic disease, but also like fibromyalgia and general chronic pain. 

So, that was really, really exciting. The other one, I thought you would like this one, too, is — and you were there — but the socials, actually, this might have been the last day where some of the people left earlier. But there was one from Dr. Ernest Vina called ‘Mobilizing Hispanics with knee osteoarthritis through live video consultations: A dyad based approach’. That’s when they looked at — they involved not just the patient in an exercise intervention, but they involved a caregiver or a loved one along with them. 

And it just showed that when you have a family or friend who can exercise along with you, it’s more enjoyable, they’re more likely to do it, tt’s more fun. And it was all done through telehealth. So, it was accessible. So, that was really exciting, too.

Jen:  21:13

Yeah, and you know, I’m looking through here also, and what’s the other one I was looking at? The interleukin-15 receptor? 

Cheryl:  21:20

Oh, yeah. Mm-hmm. 

Jen:  21:23

Yeah. That one — where’s the other one? ‘Immune intolerance, the impact of TCR signaling strength’?

Cheryl:  21:32

Whoa, I forgot that one. 

Jen:  21:34

Yeah, that one was Lin Shen, University of Chicago. 

Cheryl:  21:39

Okay. 

Jen:  21:40

And then, where’s the other one I was looking at. Gosh, there’s so many here.

Cheryl:  21:49

There was another one that I’ll just, that was really straightforward. Unusual because a lot of them were, because they were complicated. But one was ‘The role of melanocytes in cutaneous and systemic lupus’. So, trying to figure out why people with lupus have increased UV sensitivity. And they said, whether you have light or dark skin, you have to wear a sunscreen if you have lupus due to the increased UV sensitivity. 

So, that was a good reminder, because I think it’s kind of unintuitive for some people to wear sunscreen if they have darker skin, you know. Understandably, you’d be like, oh, I’m fine. But especially if you have lupus, you need to still wear sunscreen.

Jen:  22:25

Absolutely. And that was a good one. I think I found the other one. ‘Antigen specific T-cell therapies: Developing more for rheumatic diseases and get rid of the antibodies’. That was Maximilian?

Cheryl:  22:43

Okay, nice. Love the name.

Jen:  22:45

I know, right? Yeah. Gosh, I was hoping that later, my notes wouldn’t make sense. And some of them do. And some of them don’t.

Cheryl:  22:53

No, same. Yeah. 

Jen:  22:55

And but, you know, I think for people out there with lupus, there was so much information for lupus. 

Cheryl:  23:01

Yeah, it seemed like lupus had the most research. I think some of the staff at the Rheumatology Research Foundation that we got to chat with kind of put a few things in context. They said, like certain years and certain periods of time, they have different research priorities. Like for a while, the rheumatoid arthritis was a big research priority. And there were so many advancements. Now, they’re looking more into lupus. I know Sjögren’s is one where there’s still no FDA approved, like, direct treatment for Sjögren’s. And so, you know, they sometimes certain years see like a spurt of activity in one area versus another. 

And one of the other things we got to do, so we got to listen to the researchers present their case, their updates. And then, we also had the five of us, or six of us patient advocates, or Rheum Champions, we had a chance to do some roundtable discussions with the researchers and kind of ask additional questions or help give the patient voice, you know, help express our thoughts and questions about it. What — I actually didn’t get to talk to you after, I don’t think so. What was your — was there any takeaways from your roundtable or any of the conversations you had with the researchers? 

Jen:  24:16

Yeah, so initially, I was supposed to sit down with Monica Guma to talk about microbiome and metabolites — I’m butchering that word. That’s actually not who I ended up sitting down with. And for the life of me, I cannot think of his name right now. But it was a gentleman. I think he had gray hair. I think he was tall with gray hair. That’s about what I remember. And a lot of it was he was asking questions about our lives and our diagnosis, and what kinds of questions we have for rheumatologists. And one part of what we were talking about is how sometimes we patients, we don’t tell them everything. And we are all guilty of this at some time where we think, “Oh, well, this is not important at this time, we need to focus on this bigger thing.” But really, they want to hear all of it. They want to hear every little thing that’s going on with us. Because even though it might seem small to us, that might give them the answers they’re looking for.

Cheryl:  25:22

Yeah, it’s so hard in that short amount of time, though, to know what to prioritize, you know.

Jen:  25:29

Mm-hmm. It’s almost like we need to take really critical notes of everything that’s going on with us, and and bring it all to the table and say, “Okay, this might be nothing, but I feel like I should tell you just in case,” and that’s what he was saying is, is please bring that information to us. Share it with us.

Cheryl:  25:44

Yeah, yeah, that’s beautiful. Yeah, I think, you know, this was the first year that they invited patient Rheum Champions to come to the events. And I think that, you know, we also did a little bit of like a focus group with some of the staff from the Research Foundation. And, you know, I think we had a lot of good feedback for them. I mean, obviously, it was our feedback. 

So, we think it’s good, because it’s what we thought they need to hear, you know, but I think one of the things that I was looking at from, or thinking, reflecting on, from, like, the, you know, 20,000 foot view, as they say, is that, you know, it’s not so simple as just inviting patients to something. Like, you have to really think, what is the purpose? What do you want from them? 

And I’m not saying this in a critical way. I’m just saying, I think it was a learning experience for everyone to say, okay, across all nonprofits and across research organizations, there has been an increasing trend in saying we need patients to be involved. We want patients to be involved, right? 

What’s the point in developing a research trial on an intervention, if you don’t even know if patients would actually ever use this intervention? You know, it’s not as — that’s not as applicable for things like medications, because it’s kind of like you take it or you don’t. But if it’s an intervention, like we talked with the exercise one, or the sunscreen one, you know, if patients aren’t interested in doing what you’re trying to do in your research, then what’s the point?

So, people are trying to say, okay, we understand that if our whole goal is to improve the quality of life for patients, we need to involve them, like, every step of the way. So, we were able to, the Rheumatology Research Foundation has a little new website called Rheum Lab, where they’re trying to translate some of the, you know, advancements and research resources into kind of patient friendly language. 

And we had some feedback that was like, okay, you know, definitely, this part works, this part doesn’t work as well. But I felt like it was, like, intrinsically a positive experience, just to know that they valued, you know, our voice, and they wanted us to be involved. Is that kind of how you felt too? 

Jen:  27:58

Absolutely. It almost felt like they had us on a pedestal, it was so strange. It was so strange.

Cheryl:  28:04

That’s my favorite place to be. [Laughs] No.

Jen:  28:07

You know, and to have them walk up to us and be like, “Well, we’ve been following and listening to you,” and blah, blah, blah. I was like, yeah, I kind of looked around and was like, little ol’ me?

Cheryl:  28:15

Yeah. Oh, my gosh. No, but it’s true. Like, it’s like, really, there really is this disconnect sometimes between like, the ivory tower, as they say, or like the real, like, quantitative research, versus the qualitative, our lives are qualitative. Like, we may try to track our symptoms and get quantitative data. And that’s important, but at the end of the day, we live in these — I’m speaking for myself, at least — I live in like messy gray areas, you know, as people say. It’s simple questions, the doctor might ask me, “Do you think a medication is working?” It’s actually not easy to answer that unless it’s very clearly working, or very clearly not working. Like, if it’s like, I’m in remission. Yes, it’s working. Everything’s good. If I’m in a horrible flare up. No, it’s not working. But there’s this whole world in between, right. 

And I think a lot of times, it’s like a wake up call when we express that to researchers. Like, I don’t, I still don’t know, 21 years into this — this is just time for us to go on our soap boxes — I am not saying this to be, like, to sound incendiary or to complain. I literally don’t know how to answer the question, “What is your pain on a scale of 1 to 10?” It is impossible for me to answer. 

Like, it’s like, I always say it’s like, what color is love? If I could give you an answer, it doesn’t mean anything, you know? Unless my pain is a 1 or a 10, that answer, or maybe an 8, 9, 10 or 1, 2, 3, the answer is like impossible because there’s so many different kinds of pain, right? There’s so many.

 So, I think that sometimes it researchers, that they often are focused on this really tiny silo, like trying to figure out how these monocytes are doing something, right, whereas we’re like, hi, I’m just trying to like get through the day, you know? So, it was like an interesting, an interesting experience. 

And is there anything else that you wanted to touch on just about the experience? I put in my notes, sorry, I was gonna say, I put in one of my little write up of like my takeaways, which is that, you know, the patient, simply, the patient voice matters. And that was, you know, being able to meet the other advocates and connect to them. And we represented a huge spectrum of diagnoses, ages, gender experience, you know, that was really, really neat. But like, that’s the only other one I didn’t say, yeah. Is there anything else you wanted to share?

Jen:  30:45

I just want to express that it was such a pleasure, such a pleasure to meet all the people that we met, and just to see all the things, and to be asked questions to make things better. And to talk about future collaborations and future options of things. And my hope is that we get to go again next year, and that maybe it’s even bigger and better, maybe invite more patients. Maybe let’s double it. Let’s make it 10 or 12 people. And yeah, you know, the exciting thing is, is you got me to finally join the whole Twitter X space. 

Cheryl:  31:23

Oh, yeah. 

Jen:  31:25

I did have a typo in my name in the beginning. I got fixed two days later. Yes, yes. It had me as Gravely Jen, instead of Gracefully. 

Cheryl:  31:34

I remember that. Yeah. 

Jen:  31:37

But I, you know, I went and found a lot of the researchers and the rheumatologists that we met, and now I get to follow them and hear more of their exciting information. So, I love that. And, yeah, I just, I look forward to the future. I look forward to when they actually get to fully present their stuff, you know, to finally have it out there and being used. That will be exciting to watch. 

Cheryl:  32:00

Yeah, it’s really, really cool to be able to have a peek into the in-progress research. And then, you know, yeah, maybe in 2025, 2026, we’ll see some of this. So, the way the research process is, we might see it at the conference presented as like a finished, peer reviewed journal article, you know. So, you know, a lot of times we, as patients, we might hear about new advancements in rheumatology through like, an article on, you know, the Arthritis Foundation or Creaky Joints, at the Rheumatology Research Foundation, and you don’t necessarily see all the blood, sweat, and tears that went into that, you know, research. 

So, you know, I was just thinking back — this is just, again, kind of a related thought, but what it must have been like in like the early 2000s, and maybe even late 90s, as they were developing these first biologics for rheumatoid arthritis and how exciting that must have been. Because just like I was saying, there’s no FDA approved medicines for Sjögren’s right now. There weren’t medicines other than methotrexate that were like super targeted to rheumatoid arthritis before the TNF-inhibitors. Like Enbrel, Humira, Remicade came out, and then they came out with the other, you know, the other classes and JAK-inhibitors and different kinds of inhibitors. And, you know, who knows, maybe we’re on the cusp of some new, you know, new research, new medication options. 

Because even though these medications have really changed the trajectory for the majority of patients, there’s still too many that are in that kind of difficult-to-treat category where they don’t get full remission, unfortunately. So, I think that covers the rheumatology research experience. But yeah, it’s in progress. Stay tuned. 

And I loved your point about Twitter, because that is why I’m on Twitter mostly, is connecting with other researchers like rheumatologists. And there seems to be a lot of doctors that are very active on Twitter that that aren’t really comfortable on camera, so to speak. Like, they don’t necessarily have Instagram, or Tiktok, or like Facebook accounts.

 So, yeah, so let’s go on to the rapid-fire questions. So, what are — and then, maybe because your answers might have changed since you know, I had you on an Episode 98. So, maybe they’re the same, that’s okay, too. So, what are your best, some of your best words of wisdom for newly diagnosed patients?

Jen:  34:24

Okay. So, one thing I always tell people is, you still have value. You still have so much to offer. So, just be careful getting stuck in mourning the life that you once had. Because, you know, it’s great for us to be upset. We need to share our feelings and to mourn but at the same time, put a time limit for that. Put a time limit because you still have so much of a life to live. People that need you and you have value in this world. So, set a time limit.

Cheryl:  34:58

I love that. I love that. Do you have a favorite arthritis gadget or tool in your toolbox?

Jen:  35:06

I have several and it’s probably going to be the same ones I mentioned last time. But I love my Kitchen Mama can opener. Everyone that I’ve shared it with, showed it to, everyone loves it. My husband loves my can opener. And I even have their other tool. I can’t think of what it’s called. But is that multi-gadget one? I think you have it, too. 

Cheryl:  35:27

Yeah, it looks like, the package makes it look like a little like parrot or something. It’s like a mouth. Yeah, the toucan-shaped multi-opener. Yeah, that’s a really good one.

Jen:  35:38

Yeah. That’s a good one. The jiffy twist. That’s excellent. Don’t forget, I don’t have them on right now because my hands are doing okay, but my Grace & Able compression gloves. I want them to come out with socks or ankle things. I should mention that to her. Although I’m sure many people have mentioned that to her. I don’t want to be that annoying person. But their gloves are so great. I would love to see them on my feet.

Cheryl:  36:04

I love it. 

Jen:  36:05

Yeah, I don’t know about you. But when I travel, my ankles tend to swell. 

Cheryl:  36:09

Yep, I almost — I forgot to send you a picture because when I went to New York for my college reunion, I was at one point literally laid on the ground under a bench and had my feet like up on the bench after just walking around all day. And I was like, I have to get, let my swelling go down. My feet also kind of swell, especially on the airplane. I always, I bought some compression gloves. I can’t remember the name of the brand off the top of my head but they’re really cute. They’re like, I think it’s from Not Your Grandma’s UK. Is that it? Yeah, Not Your Grandma’s UK compression socks. They have super, super cute ones. And that’s such a cute name. Yeah. 

Jen:  36:50

Okay, I’m gonna have to check that out. 

Cheryl:  36:51

I’ll put that in, I’ll put that in the chat, but also put it in the show notes. Do you have favorite book or movie or show you’ve been watching recently? Or reading?

Jen:  37:02

I don’t know about recently. Yeah, my favorite movie is ‘The Holiday’. 

Cheryl:  37:07

Oh, I just watched that for the first time this year!  

Jen:  37:10

Oh, it’s my favorite movie.

Cheryl:  37:13

Oh, it’s so good. 

Jen:  37:14

It’s so good. But there is a show I’ve been watching with my mother-in-law. It is called ‘Wildfire’. 

Cheryl:  3

Oh, I don’t know that one. 

Jen:  3

It is from the early 2000s. I think it came out in around 2006, 2007, 2008. Somewhere around there. And it’s a girl and a horse. She’d been in jail for stealing a car, I think it was what it was. And anyway she gets involved in in horses and becomes a jockey. Kind of a fun show to watch. But I have so many favorites. And of course books. I could go on for hours. I love Elin Hilderbrand. Her books are good. Kind of fun. I like rom-com type of things.

Cheryl:  38:01

Yeah, me too. So good. Do you have a favorite mantra or inspirational saying?

Jen:  38:11

I mean, probably ‘You are enough’ is what I say a lot. A lot. A lot.

Cheryl:  38:17

I say that, too. That and you can do, or ‘We can do hard things’. Yeah, that’s a good one. What does it mean to you to live a good life and thrive with rheumatoid arthritis?

Jen:  38:32

Ooh. It means to be doing the very best I can be, to be feeling my very best and doing all the things, even if they are still a little bit tough, you know. Still getting up and hiking and bike riding and I mean, you know, I’m not gonna go join a roller derby team like I once wanted to, but it means waking up and still finding ways to enjoy the life I have.

Cheryl:  38:57

Oh, that’s really beautiful. Is there anything else you want to share with the audience before we wrap up? 

Jen:  39:05

Oh, gosh. Oh, I do have some exciting news I wouldn’t mind sharing. Yeah. So, this is hopefully happening in July. But I don’t know if you know the girl that runs ‘Rare’? 

Cheryl:  39:22

Oh, yeah. Yeah. 

Jen:  39:24

Okay, so she’s amazing and so sweet. Well, she happened to notice that my friend Megan from @ItsMegzz_Fitness, that we run a support group, and it’s nothing like yours. Ours is not like a teaching one. Ours is strictly like let’s get together and talk and lift each other up. But so she reached out to me and invited us to be moderators and run it on the Cabana app.

Cheryl:  39:52

Whoa, cool. 

Jen:  39:55

Yeah. So, that’s going to be happening soon. We’re going to be making a schedule, doing a live with giveaway so people can win, you know, some stickers and some shirts and stuff like that for coming. And so, that’s kind of our fun thing coming up.

Cheryl:  40:09

Well, I think, you know, you bring up a point that support group is a very, it’s an open term or how would you put it, like, it’s an umbrella term, and it could refer to so many different things, you know. There’s Alcoholics Anonymous, which is run a certain way. There’s support groups that are, you know, completely asynchronous, and there’s a Facebook group that’s called like Rheumatoid Arthritis Support Group. There’re support groups that are in person, there’re support groups that are like mine, where I call it like an educational support group with Rheum to THRIVE, where we spend some time kind of delving in and answering, you know, answering questions about specific lessons that I’ve taught in the self-paced program. But then, we also have open support, you know, what’s going on, wins, fails, events. It’s what I call, you know, the general group discussion, and then you have other kinds where it’s purely social support, where you just, you know, there’s just so many different kinds. 

And so, I think, you know, I would say, almost like with therapy, if you’ve had a good or bad experience with one therapist, don’t let it turn you off from all of the possibilities, the same with a support group. So, people say, “Oh, I tried support groups and I hated it.” That’s just one support group that you’ve tried, you know, and I sound like a car salesman or something. But I’m just, I’m saying it because — yeah, I mean, sorry.

Jen:  41:31

Well, I think an important thing for people to think about is maybe it just wasn’t the one for you. Or maybe you weren’t putting in the effort. And I feel bad saying that. But sometimes we are the ones holding ourselves back. Are we getting involved? Are we trying to speak up? Or are we the ones sitting there hiding against the wall? And you may not be ready yet.

Cheryl:  41:50

And that’s okay, too. Maybe you weren’t — you tried and you weren’t ready, then you came back a year later. And now you’re ready.

Jen:  41:57

Absolutely. And maybe it takes time to just show up and listen to everyone else before you’re comfortable sharing. And that’s okay, too. And so, the way this one is set up, it started out as a mindset group is what we called it at the time. And we still do some of that. And so, we do some mindset mentoring for some of the sessions that we get together. And once in a while we do a fun event. We’ve had little Christmas parties where we played some games and stuff, we’ve done a paint one where everybody came and we painted cards that we’ve mailed to each other for Valentine’s Day. You know, so you never know you’re gonna get with us. You know, sometimes we’re painting and crafting and sometimes we’re just visiting and catching each other up on our lives.

Cheryl:  42:39

Well, that’s beautiful. I mean, and I’ll definitely include a link to that in the show notes. And where else can people find you online?

Jen:  42:49

I, primarily, my happy places is over on Instagram. But I do have, you know, my Gracefully Jen stuff and the My Spoonie Sisters stuff over on Facebook. And I also have a website for My Spoonie Sisters where I share blogs and share the podcast, you know, My Spoonie Sisters. And where else can you find me? Oh, my gosh, I’m all over the place. YouTube, you’ll see me. 

Cheryl:  43:18

Yeah. And well, I’ll put links in the show notes, for sure. It’s just in case someone has their phone out. And they’re like, I want to follow her right now before I forget. That’s often me. So, well, thank you so much for taking the time. I know you’ve been super busy. We both had a really busy spring with travel and other events. So, I appreciate you taking the time. Actually this was your idea. You were like, we should have record a podcast, kind of debriefing experience. 

Jen:  43:43

Yeah. Absolutely. 

Cheryl:  43:45

Yeah. And so, you know, at the Investigators Meeting and I think research can seem like such an intimidating topic to people, like research, I have to have PhD to talk about that. But hopefully we’ve made it sound a little bit more accessible. So, thank you again, and we’ll talk to you later, I’m sure.

Jen:  44:03

Oh, absolutely. Thank you so much. It was my pleasure.

Cheryl:  44:06

Yay. Bye-bye for now. 

Jen:  44:08

Bye!

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