Hey everyone, welcome to success with Sjogren's, I am so excited to welcome my friend and colleague Cheryl Crow, who is the founder of arthritis life which she is going to share all about with you um and I wanted just to share a little bit about how Cheryl and I met so um it's pretty crazy um that you know if we think back maybe 10 years ago making friends to the internet would have been probably thought to be a little bit creepy. Um but nowadays I have met so many amazing colleagues and friends virtually through instagram and facebook and so Cheryl and I connected because of our um shared experiences as both being healthcare providers and autoimmune patients um and she has dealt with all, let her explain her her story to you all but um she's a couple steps ahead of me in regards to kind of her journey and so I have looked to her for some help and inspiration and um just a really great collaborator, so welcome Cheryl, thank you so much for joining um on our successful blogs podcasts, so tell us about yourself. Yeah, thank you so much, it's wonderful to be here and I love that introduction because it really is amazing like having grown up in the era before the internet and the World wide Web and then now with not just the World wide Web but social media, it's incredible and yeah, so I am 40 years old and I was diagnosed with rheumatoid arthritis when I was 21. So I've been living with it almost half my life, I also have rain nodes and um gastro paralysis and basically this autonomy as well, which is totally a great mix. No, and um you know, I'm also became an occupational therapist six years after my diagnosis, I started occupational therapy school, which if you don't know what occupational therapy is, it's really a practical life skills focused um profession. So we really help you function in your daily life, what is it in a day in your life that you're, you know, illness or disability is making it difficult for you to do? And then can we remediate that, like if your hands are weak, can we make them stronger or can we work around it and compensate for it? So can we say, okay, if your hands are gonna get stronger, can we put a splint on to give you more comfort? You know? So it's a, it's a great profession to have alongside being a patient because I learned a lot of practical tools and so um the last thing I'll say about my introduction, So I started arthritis life two years ago as really an educational and entertaining platform. So I wanted to use the power of social media and video to, you know, Sprinkle empowering educational tidbits to people and also connect other patients, so they felt less alone? And one of my motivations was that I feel that patients aren't given enough education right after the diagnosis and um and so I like my little soapbox is like, you know, patient education should be like a priority, not an afterthought, it's a must have, you know, so, and so I love that you're, you know, you're doing if someone were doing similar things, you know, in terms of like harnessing the power of social media and the connections to help support people who might not be getting that support in the traditional medical system. But we're also working in the traditional medical system were everywhere, we're doing everything. We were ambitious, I don't know about you, but I think, um, working in the system, you realize the faults and that we don't have enough time during those visits to necessarily address all the things that really are critical for having, um, you know, success, a successful journey with whatever condition you are, um dealing with. Yeah. Yeah, absolutely. Yeah. And I think it is, like you mentioned earlier being both a health provider and the patient, it does give you a unique lens because I think, um if when people are, it's easy to jump to conclusions from both sides, like, if you're a patient, like all these doctors don't care about me or they're not listening to me, and then if you're the provider, you're like, all these patients aren't following through, or, you know, like, and you kind of, we get to kind of wear both hats and say, well, here's the complexity, like, you know, um it's not so black and white, so yeah. Right. Yeah, yeah. Um so, and I guess one thing maybe to share and of course some of our listeners kind of are already well aware of this, but um, maybe not everyone is that shogun's and rheumatoid arthritis very often will go hand in hand or with some of the other conditions you're dealing with. Two, like the dishonor nemea or the renegades and um so with auto immunity, there's so many different overlaps and um and we're kind of sometimes all struggling with our own constellation of symptoms that we're dealing with. Yeah, and you know, it's interesting. I had gone to an ophthalmologist for dry eyes after my rheumatoid arthritis diagnosis and I I saw it as two separate issues. I didn't know that. Um even if you don't have a diagnosis, if you have rheumatoid arthritis, you can have dry eyes just from the disease, you know, And um, I remember the ophthalmologist, I was like, why is why are my eyes so tricky? Like, why is it being so stubborn? And he was like, well, you know, because you have rheumatoid arthritis and I was like, what does that to do with my eyeballs? Like, you know, he had explained it to me and again, that's the patient education piece, like, yes, I could have, like, maybe read that online, but like, it would have been nice, like, if there was someone to help connect the dots for me earlier that, you know, um that it was something I could expect to potentially experience as a rheumatoid arthritis patient. So yeah, yeah. Um so thinking about your, your journey and kind of, when you were starting off, do you have particular advice that you'd like to share, kind of with someone who's newly diagnosed? Yeah. Oh my gosh, I love that's like, my favorite population to talk to the newly diagnosed, you know? So the first, the most important thing for me is has been the thing, that's the hardest at the beginning, which is acceptance. But the sooner I will tell you from my own experience and experience of many other people that I've helped through this journey. You know, the sooner you can accept that this disease is, it's gonna be a passenger in your journey in life. It's not necessarily going to be like, the main character, the driver, It doesn't have to mean that you don't accepting that you have this condition doesn't mean that, like, you're giving up hope of relief for anything. But point being the reason I like acceptance is because that's what I see happening a lot is people get diagnosed and then they they think, okay, I just have to make this thing go away, right? Like, so their whole life becomes about controlling symptoms and making the disease go away or healing it or carrying it and meanwhile their life is still there. Like, you still have relationships, you still have, you know, things that you could be engaging in, but you're like, I'll get to all that later, like, I'm gonna get that later once my I figure out my rheumatoid arthritis and Sjogren's and it's like, there's actually a different way, right? You can say, like, I have a full life that includes this disease and um and I don't need to put everything on hold while I wait, does that has that similar with your experience? No, Absolutely. And I think i it's only been more recently that I've really, kind of tried to embrace the journey of everything. Um I think I've been talking with a fair number of colleagues to, and I think this is prevalent amongst um at least amongst people like my peer group of of other women physicians, but like, and perhaps with occupational therapy school to, like, you know, you always have, like, this next goal you're going towards, right, and like, oh, I'll be happy with this next goal, but really focusing in on, you know, the fact that every day we're on this journey and we can make the most of the entire situation and and so, kind of more of the focus in the moment, as opposed to that fixation on the future, totally. It's a mindfulness based mindfulness based philosophy and the other thing is that this is a little bit maybe more relevant for chronic pain conditions that then I know you guys can come alongside chronic pain, but that there's a difference between pain and suffering. So pain is like can be conceptualized and pain can be defined many different ways. But let's, for simplicity's sake, we can say pain is like the physical experience, your physical sensation and suffering comes from the meaning that we make of that physical experience and that and the thoughts that we have around it. And so just even being aware of that in the first place, like the pain might be okay and my hands are really flaring. The suffering could be all the conclusions I'm drawing from that. Oh no it's gonna get worse. I'm gonna be in a big flare. My medications aren't working. It doesn't mean that those those thoughts aren't true. We don't need to say, oh let's like, I'm not a big fan of CBT cognitive behavior therapy, where you're like, I'm gonna like say that these thoughts are all distortions and you know, I I find it useful in some context but in the very beginning, I think just the acceptance um philosophy, like I use acceptance and commitment therapy. It's also known as Act and it's um it's actually an approach that kind of combines mindfulness and elements of C. B. T. Cognitive behavior therapy. But what you do is you just say like I'm having these thoughts and you just notice them and you acknowledge them and then you just reframe your focus to okay what can I still do with those thoughts? So, so I'm sorry, I'm gonna go away, I'm not controlling them, but um, you know, and, and can I say, okay, my suffering is my suffering is partly coming from the thoughts I'm having, like, what are some different, this is a little more CCTV, are there different ways of looking at it? Can I take it like a different view? Yeah, well, it, and it's kind of, so, and this is what I'm learning kind of threw my coach training too, is that, you know, there are circumstances, those are the facts and then it's our thoughts about those circumstances that really create our feelings. And so if we can kind of, we work the neurology and um and how our pathways are going, it really is incredibly powerful is how we can perceive and experience the situation. Yeah. And I think the other thing is that um, is kind of unlearning some fundamental assumptions you might have had about the future, you know, like, so I think a lot of times people who haven't experienced a chronic condition, your fundamental assumption is that like you're either 100% healthy or you're 100% disabled and there's no in between, but there actually is this giant gray area, right? Where you're like you and I both have these conditions, but we're able to work, but we're maybe have to do modifications and adaptations and so you, when people are anxious and stressed, they tend to go to like the polls like the oh my gosh either my life is over or it's gonna be okay. Like the forced optimism where you're like it's gonna be fine. I'm gonna control this and it's gonna go away. Um Sophie unlearning this idea that like you either have an acute condition that like gets better or you have like a fatal condition that it gets worse and you die. Like there's people who live with conditions like ours that just fluctuate and and the more the sooner you accept again that fluctuation the better because you'll be struggling less against the inevitable ups and downs. Yeah and the other and yeah just one other quick thing would be um and this is a deeper work but like unlearning your own able ism like you know able ism is like discrimination against people with disabilities and so just like racism is discrimination against people of different racial groups. Um There's a lot of times people have ideas like well I shouldn't like I don't want to use a mobility aid or I don't want to use a hot pack or kolpak at work. I don't want people to think that I'm weaker or less than you know or I don't wanna have to put eyedrops in during a zoom meeting which I totally have done numerous time. Um And so realizing that like because I think that internalized able ism is when we then say I am less than because I have a health condition, I'm less valuable than as a person and that's totally in my philosophy. That's not true at all. But it takes time to unlearn it. Yes. My health conditions make my life more challenging in some ways they put challenges in front of me, but no one's life is devoid of challenge, right? No one's happy all the time. No one feels great all the time. Even if someone maybe is 100% you know, there's the example I'll use and this might sound out of left field, I'll say, you know, if you're worth is really just in your body. I mean there's serial killers that are in jail right in prison right now. Are they more worthy than there are 100% able bodied? Are they more worthy than you? Is there life better than yours because they're able bodied? Like no, you know? But sometimes we can be hard on ourselves, you know? So I guess I go to the extremes and no, but that's how you remember kind of those um those points right? Like yeah, I love a good analogy. Um so I would love for you to explain or kind of share what you've done kind of within the space with arthritis life? Yes, okay, I am I'm a very big picture person. So my my mission is to educate empower and support people with inflammatory conditions and I do that through actually life is an acronym, which I don't remember to tell people enough. So L stands for Life hacks. I is interviews kind of like what you're doing with your podcast, you have patient interviews um f is fun and that's where the entertainment comes in and he is education. And so um I have I have my own podcast arthritis Life Yeah, sharing, you know, patient stories and and and just reflections and advice to help people feel more empowered and less alone. And then I do have two different programs. I have an online course, the Rheumatoid arthritis Roadmap, which just um is a self paced course. People can learn walkthrough and learn kind of like basically all what we call in the field like self management skills or the tools that you need to manage it on a practical level in everyday life, you know, for rheumatoid arthritis, that's pain, fatigue medication management and um you know, adaptations that might work to protect your joints. And then also the looking at the big picture of how this affects your life, you know, I really operate from like the bio psychosocial model, which is, it's not just physical, right? It's mental. So giving you mental health coping skills and then social, you know, how do you explain it to friends and family? Yeah. And then I have a room to thrive like, it's a six month long program, it's basically a support group with those educational modules sprinkled in live. So some people like the self paced, just give me it all at once. I work through it on my own, and other people are like more social and they want to support and they want to learn live and so that's room to thrive. Like rhe um and, you know, it's been really, yeah, it's been incredible because I just basically created what I felt people needed that they weren't getting in the traditional health system. It would be possible, like some of the content that I'm teaching, you could learn in an individual, one on one setting with an occupational therapist who would tailor it to your needs or, you know, some of these overlaps, right, with social work or physical therapy, but um for mental health counseling, but this is just, it's more like accessible. It's in a format that is for some people more accessible. Um And it's, yeah, it doesn't replace therapy, like if I'll tell people if you have an occupational therapist, you know, this is not a replacement for that, it's just it's education in a different um in a in a convenient format that you can kind of access from your own home and it's in a group setting, so it's not individual medical advice or anything, but yeah, it's been amazing. It's just it's been covid hit right? When I was just starting the programs, so it was like kind of a good and a bad thing, right? Because now everyone's come a lot of people I guess that are comfortable learning online so that's the good part. But the bad part is obviously we've all been through a lot of stress so but it's an amazing resource that you've created and um I certainly have shared your information with a lot of my patients and you know that um So and we'll make sure to post links for anyone who wants to check out Cheryl's podcast or programs or anything along those lines. Um I think you know the biggest thing I've taken through medical training and then even more so now as a patient is really the power of the care team and I think you know we had talked about before you know circling back to the beginning like I had not had much experience working with O. T. S. You know despite having kind of some internal medicine and pediatrics kind of background. Um And once I learned I was like oh my gosh this makes so much sense like how how is this not part. Um But um there there is so much power in harnessing each of our um our backgrounds and and experience and helping share that with um with with those that are you know going through similar journeys that we are. Yeah and I'm looking up the statistics but you know people with um with chronic conditions you know who do develop self efficacy which is like the confidence and be able to manage the everyday demands of your condition. They have, I have this um you know, I have a statistic here from Self efficacy and arthritis disability and updated Synthesis, Blah Blah Blah Blah 2014, but you know, people who are able to do that have better quality of life, less severe opinion levels less fatigue, better mental health, so it's such a win win. And um and I think, you know, in a weird way, like I think I discovered on social media like what how many gaps there were in patient education that and and it's, you know, everyone's trying their best after they get diagnosed to figure out what do I do, how do I cope with this? You know, how can I and they'll try on their own to to make sense of all these claims online, but it's overwhelming, even if you're trained health professional, there's so many different, you know, different conflicting claims and and you don't know who to trust. And so I think, you know, having a team and I do think in my ideal world, like I think I was just saying this on my own podcast, I guess you guys don't listen to my podcast probably, but you know, my ideal world would be like, everyone would have, like would have every patient who's newly diagnosed would get referred immediately to like an interdisciplinary team. You know, with, you know, obviously they have the rheumatologist, you know, allergist immunologist if needed. Obviously your primary care, you know, maybe counselors, psychologists, occupational therapists, physical therapists and there's all these standards out there that say I'm trying to look it up here from the UR european League against rheumatism, you know, there's all these that are saying, you know, you patients should have access to Um you know patient education and support throughout the course of their disease. Not just at the beginning, like there's this this article from 2015, you'll our European league against rheumatism at the time, recommendations for patient education for people with inflammatory Arthritis said patients levels of knowledge about the disease were low to moderate and the express they had received insufficient information and like again this is just soapbox, but I'm like this is a solvable problem, like this is not like a complex, this isn't like how do we make the cells of the immune system stop attacking. It's like just tell people the information that's correct then before they get lost online down these rabbit holes of misinformation, you know? Well, yeah, and I think we both and we've talked kind of off offline about having seen people taking advantage of two, which is I think has really frustrated us with um you know, some of the the unregulated nature of um the supplement and vitamin industry and um and so that you know is another kind of mission and it is part of the mission of this is to kind of help people, you know, have a little bit more um of a discriminating eye or kind of, you know, pump the brakes a little bit before, um, before buying into some things that may seem too good to be true because they are Yeah, absolutely. That was when you first said, what advice to newly diagnosed? I was also, yes. You reminded me, I was also gonna say, you know, learn about like logical fallacies and basic kind of, what do they call that, you know, heuristics like the mental mistakes that your mind tends to make because it's not your like it's not even about like intelligence or anything. So we all fall phrase like mental traps, you know, like using and it's hard because like anecdotes is such a hard one, right? Because anecdotes and personal stories our brains are wired to love stories and storytelling. And so, but it's so it's gonna be deceptive, right? Because like I finally found the statistic I've been looking for which is like 5% or less of people with rheumatoid arthritis are able to sustain long term remission without drug therapy. And I was looking for, I couldn't find the statistics. I finally did. And it's like, so that's so important to know because you can have a really amazing story of someone and the, and it's completely they're valid story and they're just in the 5% and that's wonderful for them. But if you're looking at your own odds and you're making your own medical decisions, you're more likely to be in the 95%. It's just the basic, you know, logic. So yeah, that's just the math. But so often we don't, we don't have those kind of foundational um, pieces of, of data to necessarily understand, um, the relative like likelihood of different things. So it's very common, you know, as a doctor, obviously it's very complex, but no, but it's it's it is so true and I talk about this all the time and it comes up more often when I'm talking with patients about reactions, um, like suspected allergic reactions in particular, our brain is always wired to want to connect it to what we eat and food and that's not, it's actually less often the case than than you would think. Um But I talked about the lizard brain and how, you know, our lizard brain is wired to do things in a certain way. We always want the easy button, you know, we want to survive. And so sometimes it leads us astray. Um, and so totally well and also like it's, our brains are so interesting because we're also like wired to pay more attention to negative things because they're important for our survival, right? And so like it makes sense to say okay, for example with taking a new medication, there's a possibility of side effects, but there's also the possibility that it will work, you know, but a lot of times people just hyper fixate on the negative potential and not the positive. Um and this isn't about thinking positive or negative, it's about like examining the relative likelihood. Like if I make the trek state is like 30% of people have some sort of G. I distress like that is a pretty high number for a side effect. But it's also like you know what, I don't know. Yeah. And it's also like a well you know, it's I'm just so I could try it like if it's really bad I can go off of it. It's not like a tattoo, you know, so where you can like never take it off again or not easily. So yeah, it's very complex. And obviously as we've seen with the vaccines and stuff, people have a lot of, they have a lot of complexity to, to their decision making with respect to like, you know, things that may potentially cause they're harm even if it's like an infant test, normally small likelihood. So And unfortunately, you know, as as we're working within the field, a 20 minute visit that's not what you're trying to address. You know, all the different things is not, it's just not set up to engage in the conversation the meaningful conversations that you really need to have to to discuss some of those those concerns and and just build that trust with um with the person that is trying to help give you advice on what's going to hopefully work best to get you into remission. Yeah. Absolutely. Yeah. Well thank you so much Cheryl. I would um invite you. Do you have anything any parting words that you would love to share with our group? Yeah. I mentioned acceptance and commitment therapy earlier and the my favorite book on it is actually called the happiness trap. And it sounds like just like a just pop psychology book but it's blocked by a ton of research. Um It's by dr Russ Harris, a psychologist in Australia. And he really explains like the happiness the trap is that we think that by eliminating all struggle and strife in our life will be happier. But actually the sooner that we accept there's acceptance that struggle is part of life and no one no one has a struggle free life. They're actually happier we are because our expectations are more um are more aligned and also the so the acceptance part is I keep talking about acceptance but also the commitment. The C. T. This commitment therapy part is where you then you accept what's going on currently. Like right now my body feels this way doesn't mean it's always going to feel this way doesn't mean I'm giving up hope or resigning myself to a negative future. Just means this is what it is right now and then you connect with what's possible in your life today right now. What can I do that brings me joy or fulfillment or like helps my, helps my um, quality of life today, instead of, again, hyper fixating on this like future that you must control and make better. It's been the biggest help of my life. And I've also, I've gone to therapy and learn this from my therapist, but also read the books. I can't tell again correlation like which one if I had just read the book without therapy, I'm not sure how far what I've got and hopefully pretty far. But um, and then, and then the last thing I'll say that I think is super helpful again, thinking about newly diagnosed for Sjogren's is um, is accepting that some problems are solvable and some problems are perpetual and actually that come that is from acceptance and commitment therapy, but it also comes from marriage research from Dr john Gottman and Seattle, I love him. And um, he found that couples in who were less likely to um to divorce were the ones who who accepted that, like, I accept that my, that, that my husband leaving his socks on the ground is, is going to be a perpetual problem and like you have to kind of learn it and it takes a long time. I'm not gonna minimize it. Like when you're chronically have a chronic illness, you're gonna get newly diagnosed, like it's On a given day, I still don't know, after 19 years sometimes is my pain or my fatigue today. What what degree of my pain or fatigue is solvable today. It might be that I can get my fatigue from, like a five to a three. It might be able to get to a zero. I can maybe, you know, but I and knowing that the expectation is that um be careful if you want, if your goal in your life is to feel zero pain and zero strife and zero struggle, because most people experience whether it's again from a physical, you know, chronic condition or from a family situation or work situation, there are perpetual problems in our lives, and then we spend all our time trying to solve perpetual problems. We're like, basically putting a round peg in a square hole. You're never getting anywhere. You're putting, you're wasting energy that you could be using to engage with your actual life and what's possible despite these perpetual problems were with the problems. Um you know, maybe it's like people, it's like an elephant in the room. They want to say, like, no one wants to say, like, maybe your chronic pain will never go away. Like, it's really scary to confront that, but to say, okay, well, there are people out there who who still can, like, you know, have a friend brought dr ronny Thompson, she's a pain researcher and she has fibromyalgia, she's still gardens, she makes jewelry, she does things that bring her joy and she has pain during that and you, you're kind of still in charge of making some meaning from, from your life. I would say again, it's not that it's easy, but that it's, it's possible or it's a good thing to strive for as opposed to perfect symptom control or being the perfect patient or eating the perfect diet, which I know we both have, yeah, variance with going down that rabbit hole. Yeah. Yeah. It's, it's hard because it's then you're going to see those anecdotes of people who have worked for, you know, I went vegan and Ira went away. It's like so tantalizing, you know, but then, um, it doesn't work for everyone. So, you know, you're, you're rolling the dice. But yeah, sorry. Thank you for letting me go on so many channels. I am so, I'm so thankful. Um, and so excited you were able to join us. Um, and um, if you wouldn't mind sharing your handles, um, where people can find you and then we will make sure that that is all posted with the show notes and everything, um, as well. Yeah. So I'll say it out loud. But um, I made a little bit of a rookie mistake, uh, is, they're all different and those are all different. So I'm sorry. So my instagram is arthritis underscore life underscore Cheryl and then my Tiktok is Tiktok dot com um, at arthritis life, that's the one where I actually got arthritis life. Um, and then, Oh, they're awesome. Tik toks like I've learned so many great tips and they're hilarious and fun and engaging. So for someone who doesn't spend much time on Tiktok, no, it's really fun. It's been really interesting because as you can tell from this podcast, I'm very long winded. And so to try to get my point across in 15 seconds or 30 seconds, it's actually been a really fun challenge or, you know, and, and then the other one I would say is youtube. So youtube dot com backslash cd backslash arthritis life is my channel where I do post like longer videos and also like product reviews and just demonstrations and um, I have talked a little bit in the past about getting um, punctual plugs or like I do get every six months. I, and just in case you haven't mentioned this on the podcast already, those are amazing. Dissolvable plugs that go in your tear duct on near your nose. Um, who thought of that problem? I need to research that. My guess is probably a very smart opthamologist. Um This is also on my to do list for after after delivery. So, yeah, it's, I mean, you can explain it more than I, but basically they put dissolvable drops because people think here my tear duct and I think that's where the tears come out of, that's actually where the tears drain into. So it, it plugs the, it's like putting a plug in your sink, right? Because creates it allows the tears that your membranes above like above your eyelid are producing too like stay in your eye longer. It's the most brilliant thing when they told me that I was like, are you like, you're seriously gonna take like these tiny little tweezers and a tiny little plug and you're like, plug my, they're like, yes, we are very steady hands. That was the most amazing thing. So, if you do, I don't know how many of you have heard of that for show grants or if it's even recommended for immigrants. But no, it is definitely part of it. And I actually, I should um that's a great um suggestion and that um one of conveniently one of charlotte's classmates and good friends. Her mom is um an ocular plastic surgeon. So we might have to invite her and see if she's willing to come on the podcast and share. And I was like, I was gonna say, oh, I wish I lived closer because then I would volunteer myself to video or I can ask my ophthalmologist if they mind me videoing myself. Getting it done. Because I don't Yeah, people were when I shared it before, people were so interested in. I already already got over the touching the eye thing when I had to get contacts. So yeah, I know it's it's very gentle. I mean it does hurt a little bit when they put it in, but then it helps it really helps with dry eyes. So I know sugar and is more than dry ice, but just had to throw up, but I had to put a plug out there. Yeah, Well, congratulations on this podcast. I'm really, I think it's really feeling a good need. So, um I'm very honored to be on it. Thank you again. And you know, with the rising tides rise all ships. So I think, you know, one of those things that, like all of us, um that we've collaborated with, it's been really fun to cheer on each other's success, you know, and helping the greater community, um and just getting, you know, getting our collective message out
