My Spoonie Sisters
Welcome to My Spoonie Sisters! If you're wondering what a "Spoonie" is, it’s a term lovingly embraced by those living with chronic illnesses, based on the Spoon Theory. It’s all about managing our limited energy (or “spoons”) while navigating life’s challenges.
Each week, join us to hear from your "Spoonie Sisters" host, co-hosts, and our inspiring special guests as we share real-life stories, tips, and encouragement. Whether you're here to learn, connect, or feel less alone, you’ll find a supportive space filled with understanding, laughter, and strength. Let’s journey through chronic illness together!
Tune in and join the sisterhood!
All guests featured or mentioned in this podcast will be listed for your convenience. Don't forget to rate and subscribe to My Spoonie Sisters and follow @MySpoonieSisters on Instagram for updates on new episodes and more. If you have a story to share or want to be featured on My Spoonie Sisters, please email MySpoonieSisters@gmail.com. We eagerly look forward to speaking and hearing from all our Spoonies!
Disclaimer: While we are not doctors or healthcare Practitioners, we want to assure you that this podcast is a credible source of information. It's based on our guests' personal experiences and the strategies we've found effective for ourselves. However, everyone's body is unique, and what works for one person may not work for another. If you have any health-related questions, it's always best to consult your Primary Doctor or Rheumatologist.
Remember, our goal at My Spoonie Sisters is to connect people and provide them with the support and tools they need to live better lives.
My Spoonie Sisters
Rheum Champions Conversation
Curious about how to navigate life with rheumatoid arthritis while maintaining a positive outlook? Join us as we reconnect with Cheryl Crow with Jen Weaver, spirited advocates and fellow Spoonies, who share her heartfelt journies. Jen opens up about the severe allergic reactions she's faced with TNF inhibitors leading to pustular psoriasis, offering a candid look at her daily routines and the importance of personalized treatment plans. Her story is one of resilience, community, and finding unexpected blessings amid the challenges of chronic illness.
Ever wondered how social media can lead to life-changing opportunities? Discover how our online connections brought us to the Rheumatology Research Foundation, where we took on the pivotal roles of Rheum Champions at the Rheumatology Investigators Meeting in Denver. Learn about the Foundation’s mission to address workforce shortages and the critical role of patient and caregiver voices in shaping the future of rheumatology research. From grant updates to the purpose of the investigators' meeting, we provide an insider’s look at the exciting advancements in the field.
Finally, gain valuable insights and practical tips for living with arthritis, whether you’re newly diagnosed or a long-time warrior. From highlighting favorite arthritis gadgets like the Kitchen Mama can opener and Grace and Abel compression gloves, to sharing personal entertainment picks and exploring support groups, we cover it all. Plus, hear about our new roles as moderators on the Cabana app and the importance of community support. Tune in for an episode filled with heartfelt stories, expert advice, and a touch of inspiration to help you navigate your journey with arthritis.
https://rrf.beta-markstein.co/rheum-champion/
https://podcasts.apple.com/us/podcast/arthritis-life/id1519637317?i=1000662917607
Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way.
Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSisters
https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)
Website:
https://myspooniesisters.com/
Yay, I'm so excited to have Jen Weaver on the podcast for the second time. Welcome, jen. Hey, how are you Good?
Speaker 2:How are you doing? I'm doing well. Thank you for having me. I'm so excited.
Speaker 1: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. That's your, what do you call it? I was gonna say spoiler alert, that's your like little hang. 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?
Speaker 2:you live and what is your relationship to arthritis? Oh okay, so I live in a little town called Kalama, Washington. It's actually Hawaiian and that's my fun fact is they yeah, it's Hawaiian it's named after I don't know. Was he a king, Was he a chief? Kalama, was he a king? Was he a chief? Um, 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.
Speaker 2:I am uh South of you, south of Seattle, north of Portland.
Speaker 1:Nice, yeah, somewhere between Seattle and Portland. Yeah, so we're both in Washington State.
Speaker 2:Yeah.
Speaker 1:I mean on the previous episode we had you on, you shared a lot about. You know your diagnosis story and you know unfortunate experiences you've had with medication side effects and I know that's a long story. But just for anyone who maybe hasn't listened to that episode number 98, how to find your new normal with rheumatoid arthritis If they haven't listened, maybe just can you give a little synopsis of your diagnosis story?
Speaker 2:Yeah, absolutely so. The quick version is around 2010, at 11, 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.
Speaker 2: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 just to say, but I would not change a thing because this made me who I am today and I think it's made me just a better person and a better friend, 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.
Speaker 1:So that's my quick version, 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, people like you and our other connections we've made in the, in the Spoonie community, which, if you're very newly diagnosed spoonies is kind of like a term for other chronic illness warriors from Christine Mezzarano's 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, wow.
Speaker 2:That's a big question.
Speaker 1:Yeah and or just typical. I mean, 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 life, if there is a typical.
Speaker 2: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 time.
Speaker 2: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 it's 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 it's taking that time to hone down what is going to work 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 and so looking at that now it's like, wow, that was, that was a pipe dream, that was crazy.
Speaker 2:I don't know what I was thinking, but you know, a day in the life of me where I am now, it's it's having that, 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.
Speaker 1:Oh my gosh, oh, I have my sleep. Diva mug I printed for myself. It just says diva, interrupt at your own risk. 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, yeah I'm I resonate with that a lot Sleep and sleep are huge.
Speaker 2:They're really important. You know and I think I foolishly 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.
Speaker 1:Some people get that, but a lot the lucky few, yes, the lucky few.
Speaker 2:But you know, I probably feel like I'm the closest to remission I 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, uh, 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.
Speaker 1:I was going to 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 that that is an important in occupational therapy we are obsessed with just calling everything occupations. We call meaningful activities and so that is one of your, it seems, meaningful activities is connecting with others through social media, absolutely.
Speaker 2: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 and and so I never wanted people to feel the way I was feeling, and so I I'm big on community and connection, and so, you know, as I go on with with my day, I, I sit down and I work on some content, ideas, when, when they come to me and a lot of it comes at night, you know I'm sitting down, relax, relaxing with my mother-in-law and we're watching a show together. 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.
Speaker 2: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.
Speaker 1:No, that's not and I was just, you know, reflecting as you were talking about, you know, the importance of social connectedness and the American College of Lifestyle Medicine, which is a really fantastic I'll put it, I'll link to it in the show notes. It's a multidisciplinary association, kind of like American College of Rheumatology is Association for Rheumatology, health Professionals, professionals, and the ARP is for, like, non-physician practitioners, 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 for whom lifestyle interventions, like you mentioned movement, sleep and stress management and, interestingly so, they have these six pillars. This is what's going to relate exactly to what you were saying about social connections on social media. The six pillars of lifestyle medicine include positive social connections, so these are considered one of the six most important things, along with whole food, plant, predominant eating pattern Again, this is going to be a little bit customized to each individual person.
Speaker 1: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. Yeah, I mean that's kind of goes without saying, but actually, you know, want to recognize that that's not going to help people's chronic illness, and so you know, 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, thank you. A print by the.
Speaker 1:American College of Lifestyle. I'm a member of it. I don't do a lot other than just read the stuff that they put out, and it's, it's great, so thank you. Thank you for answering that question. I think it's hard to summarize, but yeah, speaking of official organizations, you and I got to meet in Denver in the end of May or middle May of May for the Rheumatology Investigators Meeting through the American oh no Rheumatology Research Foundation. Okay, I was like I'm going to say something wrong. I have too many acronyms in my head.
Speaker 2:And it's such a mouthful too.
Speaker 1:Yeah, yeah. And so I would love to know, like, how did you become, initially become involved in the Rheumatology Research Foundation?
Speaker 2: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 room 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 Gabe, and yeah, so that's how it first started. And then, you know, like you, a couple of months ago, received an email with the invite to go to this. For the first time, they've 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.
Speaker 1:Yeah, yeah, it was great.
Speaker 1:They invited five or six actually, because they had a few last minute right 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 Room 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 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. Um, once you share and it's just a really quick five minute um application form, they can uh, then we'll follow up with you and share your story on the Rheumatology Research Foundation site. So, yeah, I also got contacted on social media and when they invited me to the investigators meeting, I was like what is an investigator meeting?
Speaker 1:Even though I've been so involved in the oh, I should say really quick the Rheumatology Research Foundation. It's like 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 it's in it. The whole goal of it is just to advance, you know, advance patient care and and part of that is through research. That's in the name, but also part of it is through addressing the workforce shortage, which a lot. 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 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 fire hose.
Speaker 2:Yes, yes, and I want to tell people too. It was kind of funny, we both had our laptops up and we're working on things, we're taking all these notes and take a pictures of slides and trying to find out what we can share, and it was. It was so exciting and I felt like I couldn't soak in enough. Some of it went over my head, but it was just exciting because I they truly care, they want to help, yeah, yeah, yeah. And so, okay, I pulled up the page that I think meant the most to me, and it was.
Speaker 2: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 the HDL or complex particles, and do you remember this one and talk about PON1 and yeah, I'm looking over it now and I'm like, okay, some of this makes sense, but they're looking at targeted therapy and I love that and they had 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.
Speaker 1: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 them 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.
Speaker 1:You know, one of the things I thought, thought I really resonate with one talk from Dr Betty so I think her name might be pronounced so from Yale. She talked about using tailored patient videos to overcome barriers, to treat, to target. Now, 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 in general, health related decisions in the year 2023, 2024, they want 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 like respect the patient voice so much and not I think a lot of doctors have said, oh, the patients just want to go on social media and like they're going to get all this misinformation and they hear all these bad things.
Speaker 1: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 in and explore it in a like we're going to 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 the patients. Sorry, I just going on.
Speaker 2:I'm so excited about that one too, and I was like, okay, can I, can I raise my hand, like, can we be part of this please? It's exciting and 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, because, yes, our, 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 we're not bashing on them. We need them, but we also like talking to people that live it and feel it and understand it.
Speaker 1:Yeah, a hundred percent. You know there was, there was some. Yeah, we, the, the, 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, or transcriptional profiles of circulating monocytes in their association with pain centralization and DMARD response in rheumatoid arthritis, which centralized pain isn't something we've talked about on the podcast before but, just in case you haven't heard the episodes, that's when, if you might have a rheumatic disease and ongoing inflammation, like from rheumatoid arthritis, and the pain you're experiencing might partially be or 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 in a person who has potentially ongoing inflammation and pain, how much is the pain of that pain is from that inflammation, versus centralized pain? So, um, so this is one that's very much in progress, but they were, you know it can answer that question.
Speaker 1:A lot of patients ask which is why is my pain persisting, even when my quote unquote my blood work looks good, my imaging is 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 it's still looking. It's still not, you know, conclusive yet, but they were looking at. Um, those again, the circulating monocytes. And also, um, they looked at, uh, quantitative sensory testing like pressure, pain thresholds, temporal summation and conditioned pain modulation. These are just notes I was taking, but I thought that was just really great that again, instead of saying well, like some patients have told me, when my doctor said my inflammation markers are good, so therefore they can't do anything about my pain, we don't know what it is, I can actually say okay, well, maybe we'll, let's explore. Why does this happen? Maybe, if we can find a solution to it, it could have, um, it could have huge implications, not just for rheumatic disease but also like fibromyalgia and general chronic pain. So that was really, really exciting.
Speaker 1:The other one I thought you would like this one too, and you were there, but the social Actually this might've 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, like along with you, it's more enjoyable, they're more likely to do it, it's more fun, and it was all done through telehealth so it was accessible. So that was really exciting too.
Speaker 2:Yeah, and you know I'm looking through here also, and what's the other one? I was looking at the interleukin 15 receptor Mm-hmm. Yeah, that one. Where's the other one? Immune intolerance the impact of TCR signaling strength.
Speaker 1:Whoa, I forgot that one.
Speaker 2:Yeah, that one was Lin Shen University of Chicago. Okay, Nice. And then where's the other one I was looking at? Gosh, there's so many here.
Speaker 1:There was another one that I'll just. That was really straightforward. Unusual because a lot of them weren't, because they were complicated, but one was the role of melanocytes and 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 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. Understandably, you'd be like oh I'm fine, but especially if you have lupus, um, you need to still wear sunscreen absolutely, and that was a good one.
Speaker 2:Um, I think I found the other one, the uh antigen specific t-cell therapies. Oh, so I develop, developing more for rheumatic diseases and get rid of the antibodies. That was Maximilian, okay, nice, love the name, I know, right, I mean gosh. I was hoping that later my notes would make sense and some of them do and some of them don't. Yeah, no same, yeah, and. But you know, I think for people out there with lupus, there was so much information for lupus.
Speaker 1:Yeah, it seemed like lupus had the most research and 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 then there were so many advancements. Now they're looking more into lupus.
Speaker 1:I know Sjogren's is one where there's still no FDA approved like direct treatment for Sjogren'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 updates and then we also had the five of us or six of us patient advocates, our room champions. We had a chance to do some round table 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 yours, I don't think. So what was your? Was there any takeaways from your round table or any of the conversations you had with the researchers?
Speaker 2:Yeah, so initially I was supposed to sit down with Monica to talk about microbiome and metabolic metabolites 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. It was a gentleman. I think he had gray. I think he was tall with gray hair, that's about what I remember. And uh a 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. We don't tell them everything and you know we're 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 answers they're looking for.
Speaker 1:Yeah, it's so hard, in that short amount of time, though, to know what to prioritize.
Speaker 2:It's almost like we need to take really critical notes of everything that's going on with us 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 please bring that information to us, share it with us.
Speaker 1:Yeah, yeah, that's beautiful. Yeah, I think you know this was the first year that they invited patient room champions to come to the event 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. This is 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 there was a learning experience for everyone to say okay.
Speaker 1: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 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 about the exercise one or the sunscreen one, you know if, if patients aren't interested in doing what you're trying to to do in your research, then what's the point?
Speaker 1:So people are in 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 a new website called RheumLab, 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? Absolutely.
Speaker 2:It almost felt like they had us on a pedestal.
Speaker 1:It so strange it was so strange place to be.
Speaker 1:No you know and to have them walk up to us and be like we've been following and listening to you and blah blah, blah and I was like yeah, I kind of looked around and I'm like little old me, yeah okay, oh my gosh, no, but it's true like it's like really there it 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 then the day we live in these at least I'm speaking for myself, at least I live in like messy gray areas. You know people say simple questions that doctor might ask me do you think your 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.
Speaker 1: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 still don't know 21 years into this, this is just time for us to go in our soapboxes. I'm not saying this to sound incendiary or to complain. I literally don't know how to answer the question. What is your pain on a scale of one to 10? It is impossible for me to answer Like it's like. I always say. It's like what color is love? Like I could give you an answer it doesn't mean anything, you know, unless my pain is a one or a 10,. That answer, or maybe an eight, nine, 10, or one, two, three, the answer is like impossible because there's so many different kinds of pain, right, there's so many. So I think that sometimes that 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 that's always like a an interesting, an interesting experience.
Speaker 1:Um, is there anything else that you wanted to touch on? Just about the experience, um, I, I put in one sorry, I was gonna say, uh, I put in one of my little write-up of, like my takeaways, which is is that you know the patient, simply the patient voice matters and and that was, you know, being able to meet the other advocates and connect to them, and we had, we represented a huge spectrum of diagnoses, ages, gender, experience. You know, that was really really neat, but I think that that's the only other one I didn't say yet. Is there anything else you wanted to share?
Speaker 2:I just want to express that it was such a pleasure, such a pleasure to meet all the people that we met and 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. Yeah, and yeah, you know, the exciting thing is is you got me to finally join the whole Twitter X space.
Speaker 1:Oh yeah.
Speaker 2:I did have a typo in my name in the beginning. I got fixed two days later.
Speaker 1:Oh, you fixed it good Okay.
Speaker 2:Yes, yes, it had me as gravely, jen, instead of gracefully.
Speaker 1:I remember that yeah.
Speaker 2:But I, you know I I went and found a lot of the researchers and the rheumatologists that we met and 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.
Speaker 1: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, 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 these we as patients, we might hear about new advancements in rheumatology through like an article on, you know, the Arthritis Foundation or Creaky Joints of 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 nineties, as they were developing these first biologics for rheumatoid arthritis, and how exciting that must've been, cause, just like I was saying, there's no FDA approved medicines for Sjogren's right now. There weren't medicines other than methotrexate that were like super targeted to rheumatoid arthritis, before the TNF inhibitors like Enverol, hemera, 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, you know 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. So I think that's that covers the rheumatology research experience. But, yeah, it's in progress, stay tuned.
Speaker 1: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 aren't really comfortable on camera, so to speak, like they don't necessarily have Instagram or TikTok or like Facebook accounts. So yay, so let's go on to the rapid fire questions. So yay, so let's go on to the rapid fire questions. So, what are? And then maybe cause? Maybe your answers might've changed, since I had you on an episode 98. So maybe they're the same. That's okay too. So what are your best, or some of your best, words of wisdom for newly diagnosed patients?
Speaker 2: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 and mourning the life that you once had. Because 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 to that our feelings and to mourn but at the same time, put a time limit on 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.
Speaker 1:I love that. I love that. Do you have a favorite arthritis gadget or tool in your toolbox?
Speaker 2:I have several and it's probably going to be the same ones I mentioned last time. That's okay, 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 cat can opener. And I even have their other tool I can't think of what it's called, but it's that multi-gadget one. I think you have it too, yeah.
Speaker 1:It looks like. The package makes it look like a little like parrot or something. It's like a mouth. Yeah, the two can shaped multi-opener. Yeah, that's a really good one.
Speaker 2:That's a good one. Uh, the jiffy twist, yes, excellent. Uh, don't forget, I don't have them on right now cause my hands are doing okay, but my Grace and Abel compression gloves.
Speaker 2:I want them to come out with socks or ankle things. Yes, I should mention that to her, although I'm sure many people 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. I love it. Yeah, I don't know about you, but when I travel, my ankles tend to swell.
Speaker 1:I love it. Yeah, I don't know about you, but when I travel my ankles tend to swell. Yep, I, 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, let my swelling go down my feet. My feet also kind of sweat, especially on the airplane, but I always. I bought some compression gloves. I can't remember the name of the brand on the top of my head, but they're really cute. They're like um, they're I think it's from not your grandma's UK, is that it? Uh, um, yeah, not your grandma's UK compression socks. They have super, super cute ones and that's such a cute name yeah.
Speaker 1:Okay, I'm going to have to check that out. I'll put that in the chat, but I'll also put it in the show notes. Do you have a favorite book or movie or show you've been watching recently or reading?
Speaker 2:I don't know about recently, but my favorite movie is the Holiday. Oh, I just watched that for the first time this year, oh, it's. My favorite movie is the Holiday. Oh, I just watched that for the first time this year. Oh, it's my favorite movie. That's awesome, that's so good, it's so good. But there is a show I've been watching with my mother-in-law. It is called Wildfire. Oh, I don't know that one. It is from the early 2000s. I think it came out around 2006, 7, 8, somewhere around there, okay, and it's a girl and a horse.
Speaker 2:She had been in jail for stealing a car, I think it was what it was. And anyway she gets involved in horses and becomes a jockey. That's amazing. 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 Ellen Hildebrand. Her books are good. It's kind of fun I like like rom-com type of things.
Speaker 1:Yeah, me too. Oh, so good. Do you have a favorite mantra or inspirational saying?
Speaker 2:I mean probably you are. Enough is what I say. A lot, a lot, a lot.
Speaker 1:I say that too, that and you can do her, or we can do hard things, or I'm doing Absolutely yeah, that's a good one. What does it mean to you to live a good life and thrive with rheumatoid arthritis?
Speaker 2:Oh, 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 I I'm not going to go join a roller derby team like I once wanted to, but it's. It means waking up and still finding ways to enjoy the life I have.
Speaker 1:Oh, that's really beautiful. Is there anything else you want to share with the audience before we wrap up?
Speaker 2:Oh gosh, oh, I do have some exciting time.
Speaker 2:That's what I was going to say 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. Oh, yeah, yeah, okay. So she's amazing and so sweet. Well, she happened to notice that my friend Megan from Meg's 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. That's great. So she reached out to me and invited us to be moderators and run it on the Cabana app. Whoa cool. Yeah, so that's going to be happening soon. We're going to be making a schedule, doing a little giveaway so people could 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 for coming, and so that's kind of our fun thing coming up.
Speaker 1:Well, and I think you know you bring up a point that support group is a very it's an open term or what, how would you put it? Like it's, it's a, 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 are Facebook group that's called like Rheumatoid Arthritis Support Group. There's support groups that are in-person.
Speaker 1:There's support groups that are like mine, where I call it like an educational support group with Room 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, what's wins, fails, invents, 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. Some people say, oh, I tried to support group and I hated it. That's just one support group that you've tried.
Speaker 2:You know, and I feel like a car salesman or something, but I'm just I'm saying it because, yeah, I mean sorry, well, and 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?
Speaker 1:And you may not be ready yet, and that's okay too. Maybe you weren't. You tried and you weren't ready, and then you came back a year later and now you were ready, absolutely.
Speaker 2:And maybe it takes time to just show up and listen to everyone else before you are 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 call 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 mailed to each other for Valentine's day. You know so you never know what you're going to get with us. You know, sometimes we're painting and crafting and sometimes we're just visiting and catching each other up on lives.
Speaker 1:Well, that's, 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?
Speaker 2:And where else can people find you online? I, primarily my happy place, is over on Instagram, but I do have, you know, my gracefully gen 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 my Spoonie Sisters. And where else can you find me? Oh, my gosh, I'm all over the place Twitter, youtube, you'll see me.
Speaker 1:Yeah, and we'll. 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, 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 record a podcast kind of debriefing our experience. Yeah, absolutely 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 a PhD to like 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.
Speaker 2:Oh, absolutely. Thank you so much, it was my pleasure, yay, bye. Bye for now.
Speaker 1:Bye.
