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Patient Stories, Podcast

Loving Your Body through Fitness and Sexual Intimacy: Episode 78, Arthritis Life Podcast

September 2, 2022
66 min read
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Summary: 

Living with chronic illness can make it hard to love your body. In this episode, personal trainer and juvenile idiopathic arthritis warrior Liv Loo shares how she learned to love her body through fitness, sexual intimacy, mindfulness and more. 

Content Warning – This episode contains profanity and explicit sexual content 

Video of Episode

Episode at a glance:

  • Liv’s diagnosis story for juvenile idiopathic arthritis and uveitis
  • Highlights and lowlights of growing up with juvenile idiopathic arthritis
  • Liv’s Fitness and self-advocacy Journey: switching jobs to protect her energy and stress levels and finding her own personal training business MovetoLiv
  • When to push and when to rest?
  • Mindfulness and being present even in pain discussion
  • Busting the biggest myths about arthritis-friendly / flare friendly workouts
  • Why is intimacy is so important for spoonies  – learning to connect with our bodies, trust them, and communicate with partners. Live shares how sexual intimacy, kink, and BDSM found a place in her chronic pain management.
  • Liv’s best Advice for the Newly diagnosed

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, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Join the waitlist for the next group, which starts in October 2022!

Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis. 

Speaker Bios:

Liv Loo: Liv was diagnosed with RA at age four and grew up with a deep understanding and appreciation for movement. Finding purpose in helping others discover their power, Liv studied to become a Certified Personal Trainer and founded MoveToLiv in 2018. Since then she has been creating adaptable movement for the chronically badass and advocating for all invisible conditions.

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.

Episode links:

Full Episode transcription

Cheryl:  

I’m so excited today to have Liv Loo on The Arthritis Life podcast. Welcome!

Liv: 

Thank you so much for having me.

Cheryl:  

Yeah. This is so exciting because I feel like I said earlier, I feel like I know you already. And even though we’ve only interacted on social media asynchronously, so now we’re synchronous. So, woo-hoo! Yeah, can you just give a quick intro to start off, you know, where do you live? And what is your relationship to arthritis?

Liv: 

Yeah, so I live in San Francisco, California. So, I’ve been here for about 14 years. And my relationship to rheumatoid arthritis is I’ve had RA since I was four years old and uveitis since I was eight. So, I’ve been, yeah, spoonie my whole life.

Cheryl:  

Wow. Yeah. I would love to hear like how, when you were four, what was the process like to get diagnosed? What were some of your first symptoms? And do you remember anything from that, or what your parents were telling you?

Liv: 

Yeah, surprisingly, I do. The one — and surprisingly I don’t. The biggest thing I remember is actually having tummy aches in the morning, especially before like, going to kindergarten. I love kindergarten.

Cheryl:  

Kindergarten is for life.

Liv: 

Yeah. So, I’d have massive stomach aches, and I go on my mom’s floor and I would just like keel over in the fetal position and be like, “Mommy, my stomach hurts so bad,” and I don’t remember my joints hurting. But I just remember being like, something is terribly wrong. And my mother being the amazing advocate she was, did everything in her power to talk to doctors, not take no for an answer, go to specialist after specialist until somebody listened and took the time to do more tests and talk about more information. And she also read a number of medical encyclopedias. So, she — her best friend, my auntie, was like, “Your mom could have been a doctor,” just because she read so much and was so educated and cared so much.

Cheryl:  

Wow. Now, you don’t have to say your exact age. But what is — if you want to share like your age range, or like what time period was this? 

Liv:

Yeah, no, I’m 32 now. 

Cheryl:

Okay, okay. I have no problem sharing my age. I just, I always try to be sensitive.

Liv:

Me either.

Cheryl:

Because, well, I think what’s the reason I asked that is that I think it’s really hard for people who are younger to understand what it was like before the Internet was so accessible and ubiquitous. And you literally had to, like go to the library to like, check out books about stuff. You couldn’t just search on the — I don’t know, because you’re about 10 years younger than me. So, maybe it was, by then. There was this kind of interesting period where it all changed. But yeah, that’s, you know, tummy aches are one of the most common manifestations in children of all sorts of conditions, right. So, it could be anxiety, could be cancer could be, you know, juvenile arthritis. So, it’s amazing that she kept on searching. Do you have any family history, by any chance? I’m just curious if like, anyone else —?

Liv: 

Yeah. So, my mom in particular had fibromyalgia. She definitely had some — I’m unsure if it was rheumatoid or osteoarthritis. And she also had a lot of mental health conditions going on for her from like, a lot of like childhood trauma and such. And a lot of my aunts on my maternal side, they also had a lot of mental health conditions. I’m unsure about my paternal family, like if they ever had any automatic autoimmune conditions. But right now, in later adulthood, my brother has found out that they have gout. Like, gout comes up for them a few times, but nobody’s had it like me or my mom. Like, nobody’s shown up in the ways that my mom and I had.

Cheryl:  

Okay, but that’s just yeah, that’s really a testament to her, you know, that she listened to you and advocated for you. And I know that the focus of this episode is going to be a couple other things, but I’m always curious to hear some of the highlights and lowlights of having juvenile, you know, it was probably called juvenile rheumatoid arthritis at the time, or now called juvenile idiopathic arthritis. Like, yeah, you know, were you ever isolated from peers or do you ever have any teachers or people who didn’t understand? On the converse, any positives you want to share? Highlights and lowlights.

Liv: 

Totally. I find, especially after like being an advocate for people and hearing their experiences, I find myself so lucky. So fortunate. And also, this is how it ought to be for everybody. So, because it started when I was so young, I started kindergarten having a diagnosis and I didn’t go to preschool. So, my mom immediately let the office know, let the teachers know; she was such a great advocate. And she was pushy too. I oftentimes was late to school and the office — I would walk in and the office would recognize me and give me a late slip without question. So, I didn’t have to sit there. I didn’t have to explain myself. I was just immediately excused which, on the contrary, like it was a little bit weird walking in late and having all the kids look at me and being like, “Why is it okay that she’s late all the time?” And so, there was a little bit of an issue there. But overall, I don’t remember it bothering me too much. 

And then fast forward to high school. I actually, I went on methotrexate in high school. And it actually was a godsend. I went into remission for a year. But then when I came out of that remission, and like, all the symptoms came back. I had a lot of friends; I was friends with everyone. Like, I was one of those people who kind of hopped around, I was like, hi, hi, hi. And I had a lot of friends on like the football and basketball team. And my friend Jason — and I will always — I even reached out to him, like, a year or two ago. And I was like, “Hey, I was talking about having RA in high school. And I’ll never forget that you did this for me.” But he would give me piggyback rides to class, so that I made the bell. And he wouldn’t even ask too. And it was one of those things where you never want to ask for help. And you don’t want to say yes to help. And I didn’t have to do either. 

He was like, “Hey, where’s your class? Cool. Hop on.” Because at the time I was on one crash, because my leg was so inflamed. And I’ll never — I get chills right now because I’ll never forget. Like, the kindness and understanding. So yeah, like, as far as like, school went, such a great experience. Really positive. I even actually got put in home-school for a while, which I know has like some serious pitfalls. [Laughs] But it was about, it was from 5th and 6th grade. So, I ended up being really shy going into 7th grade, which was kind of like, ugh. But it enabled me to really take my time. And it kind of taught me to taper my energy throughout my day, which is a really cool experience. And none of my friends, like childhood friends growing up, they didn’t ask questions. They were just very accepting and just kind of went with the flow.

Cheryl:  

No, that’s amazing. I literally have had the same thing before about like, well, in my 20s, I was diagnosed at 20. But you know, people are like, “Oh, were you like, you know, peer pressured to drink when you’re on methotrexate? Or do, you know, your friends are like really, you know, not understanding about it,” and I was like, the only thing I ever felt peer pressured to do is just stay up late, or like sacrifice sleep. And I think that that was harder for them to understand, like, that I really — sleep is a medical need, you know, for me. 

Liv:

Yeah. 

Cheryl:

But I always felt like, you know, except for some of the treatment by some of the medical professionals, I feel like for my family and friends, I just got so lucky that everyone was so understanding. So, it’s great to hear someone else have that experience. Sometimes I’m like, am I the only one? But yeah. And I think that that piggyback ride is such a great example of inclusion. Like, true inclusion, right. And it’s like done in a way that makes you feel like it’s this fun and like everyone wants a piggyback ride, right. 

Liv:

Yeah. [Laughs] Like, why did she get it? 

Cheryl:

Yeah, exactly. Yeah, I know. I think I volunteered at the Arthritis Foundation that our local Kat-Fish camp for kids and families — oh, how do I say this one — Kat-Fish family camp for kids with juvenile idiopathic arthritis, so that whole families can come. And it’s so great that the siblings are there, and they get to kind of meet other people and realize that their sibling is not the only one. But also, I was talking to one of the families about that whole idea of people quote-unquote ‘using’ their disability as an excuse or like asking for special treatment. And I had this long conversation with two of the parents about that with their high schooler. And we just kind of talked about like, what do you really have to lose from believing the child, right. If your 13-year-old is saying that they are really, really tired in the morning because I mean, if those listening if you don’t know too much about inflammatory or autoimmune arthritis, morning stiffness, and difficulty getting started with your energy in the morning is like a hallmark symptom. 

And so I’m like, I think most people — this is just me, maybe I’m like a Pollyanna — but like, I think most people over time, like, yeah, they might experiment a little bit with like, “Ooh, what can I get away with?” because that’s part of being a teenager, but like, at the end of the day, like, they’re gonna — I hope, I would imagine, I’d rather err on the side of believing that they’re going to self-monitor and be like, “Okay, it’s boring after a while to get away with going late to school every single day maybe,” and so I was like, why not just err on the side of believing the child? Like, I mean, but I don’t know. I mean, I think I struggle with, “Am I just being naive?” but I’m like, so… I don’t know. What do you think?

Liv: 

It’s true, because, yeah, it’s absolutely true. Because even if it’s not, say like arthritis or some like physical condition, it could be like they’re having like a mental trip. Like, why do kids try to get away with stuff to begin with? It’s likely because they need something or, you know, it’s — all of it is some form of communication. So, like leaning into that is I agree with you and can never be a bad thing. At the end of the day, you’re gonna learn something.

Cheryl:  

Exactly, yeah. And I think you totally hit some synapse firing when you said that, because I used to work with children with developmental differences, and neurodiversity. And, you know, that was a great book I read by Ross Greene called ‘No Bad Kids’. And it’s all about how all behavior is communication, you know, and so that is the communication saying that ‘I’m lonely’, is it that, you know? And it’s a form of, yeah, they’re all form of communication. So, I just think, you know, like, at the end of the day, I don’t want my own child to ever think that I’ve questioned their self-assessment of their pain because no one can know someone else’s pain, right. 

Liv:

Exactly.

Cheryl:

But, yeah, but on a little different note, but one of the things that I first noticed when, I guess, I don’t even remember the first time I saw one of your videos, but you know, we’ve all, we’ve met — just like Ali, you know, @AnotherDayWithRA — just met over social media. And you’re known for being such a great role model for, you know, flare-friendly fitness. Oh, I just made that alliteration, but you probably already said that. Flare-Friendly Fitness. You’re a friendly flare. You’re my friend who does flare-friendly fitness fabulously. Fabulously!

Liv:

That’s great.

Cheryl:

And I also think that you have seemed to really embody like a self-acceptance vibe. And like, I think that that’s — I’m just curious how — okay, I have like 19 questions — but how did you get it? What is your fitness quote-unquote ‘journey’? How has that changed over time? Yeah.

Liv: 

Well, first of all, thank you for reflecting that back to me. I think when we’re doing our thing, it’s always like lovely to hear somebody’s perspective. So, I really, really appreciate you saying that. And that’s what I do try to embody, is like the self-acceptance and such. So, my fitness journey, obviously, growing up with RA, you know, like, you’re constantly navigating, you’re constantly troubleshooting and learning how — even if you’re not conscious of it — you’re learning how moving your body makes you feel. Going outside to play as a kid, not going outside to play, like that stuff is never fun. 

And throughout my late teens, early 20s, a lot of people — and I didn’t know anybody except for one family member who actually isn’t blood related, he has RA. And so, he was a bit of a role model. But nobody my age and that I can truly see eye-to-eye on had RA. And people would be like, “How do you move so much? Like I don’t understand, like, how are you so active?” I’m like, “I don’t know. I’ve been — just keep moving as a kid.” And little did I know, that would be my mantra. 

And then, late 20s, you know, as your body starts to change, as your hormones start to reset again, like, I was working a full-time job where I was a manager at a small business. And it was such a big caretaking role. And it was a non-stop role. And being a manager sounds great because you get paid a lot. But you’re also like the messenger and the middleman for a lot of things. And you take on a lot of people’s energy. 

And I just started being run into the ground. I was like, wow, I actually can’t move like I used to anymore. Like, this is insane. And but I was still like backpacking, rock climbing. I’d go to the gym. I’d, you know, try to go for a run here and there. And that didn’t pan out until, yeah, now in my 30s. 

So, I noticed like a big decline. I was also doing aerial fitness, which like, for anyone who is unfamiliar with like aerial silks, you basically learn how to fly up on this apparatus. And it really forces you to connect to your body. So, while my energy was decreasing, I was connecting more with my body. And I was like, whoa, this is insane. 

Like, one day my boss walks in. He’s — I love him. He’s still family. Like, I see them all the time. He comes in, he’s like, “Liz, how are you doing?” I’m busy at the front desk and I’m like, “I’m not fucking okay.” Like, I yell. I’m like, “I’m not fucking okay!” And he was like, “Cool. We’ll set up a meeting. Great. Just keep doing your thing.” I was very grateful for his reaction or lack thereof. 

So, we have this meeting and I’m like in tears. And I’m like, “I can’t do this anymore.” And they’re like, “Why don’t you take like a sabbatical? Why don’t you take some time off, go on disability?” and I was like, “No, because that’s not gonna help. That’s gonna — that’s a band aid.” So, I realized, I’m crying. I’m eating pancakes and we were out for breakfast, and I’m eating pancakes crying. And I’m like, “I just want to help people like me. Like, I just want to help them get out of this place right here.” I’ve always had people ask me how do I keep moving? How do I do this? And at this job, I don’t have time to move on my own. And that’s the problem. And so, I basically stepped down from manager, you know, demoted myself, which was great. Demotions are a good thing, people.

Cheryl:  

Yeah, you’re like, “As manager, I am taking the action of demoting myself from manager.” Yeah. No, that’s so important. Yeah, you’re listening to your body.

Liv: 

And it was probably the first time I’d ever advocated for my body in my whole life, right. I was like, wow, I think I’m growing up finally. And then, from there, I actually reached out to my aerial fitness instructor. And I was like, “Hey, I just want to let you know that these classes really helped me connect to my body. And I’m so passionate about helping people do the same. And I just want to let you know that you inspired me.” 

And she emailed back and said, “Actually, I’m really happy you said this. I’ve been looking for a trainer to come in and take over some of my classes. How would you like to come on board?” So, like very serendipitous, very, like, wow, okay, thank you universe. So cute. That happened. And then I realized like, I don’t want to work for anybody but myself. Thank you. That was a beautiful stepping stone. It was fabulous. Taught me so much of what to do and what not to do. And then I founded Move to Liv in 2018. And that is that, you know. [Laughs]

Cheryl:  

Yeah, so, Move to Liv is your business where you do personal training, right? Or is it —?

Liv:

It is, yeah. 

Cheryl:

And did you start with everything in person? Or —? 

Liv:

I did. 

Cheryl:

Yeah, of course. It’s 2018. 

Liv:

Yeah, 2018. It was such a different time. 

Cheryl:

It was a different time. Yeah. Sorry. Yeah, like, duh.

Liv: 

I mean, a lot of people were doing virtual. I even had people reach out and asked me if I was — like, Laurie Grace. She was like, “Hey, do you do virtual?” and I was like, “You know, I really thrive on the interpersonal connection. I thrive being in person, yada, yada.” That whole obviously changed. And the truth of the matter was, I was afraid to go online. I didn’t know how to connect with people online yet. And that also changed and like, what a beautiful shift COVID brought, you know, looking up the positives, the silver linings of COVID. Yeah, so yeah, I went completely online — not completely online. I mean, temporarily, yes. But that’s when I started doing the Flare Friendlies, six days a week. And I just jumped in.

Cheryl:  

Oh, my gosh. So yeah, can you tell, because some people might not have, you know, ever been to a fitness class or worked with a personal trainer. Can you explain a little bit more like, what is it like? And what are the different things that you offer, just like as an example for people to understand? Because it’s so great to learn fitness from somebody who really gets it right, somebody who actually lives it.

Liv: 

For sure. So, I’ll start off by telling you why I even wanted to become a trainer is because I’ve gone to classes, I’ve gone to like boot camp style, I’ve done boxing, climbing. And in all of those, I felt like I lacked this connection to the class because there wasn’t much space created for modifications. But not just modifications, but actually forming — like encouraging the people to form this workout to meet their bodies. It was like, “Here it is. You do your best to make it here,” versus, “Here you are. Do your best to make the movements catered to you.” And that’s what I do. 

And working with a personal trainer is all about, yes, accountability. That’s probably the first thing people think of. Like, “Oh, man, I need a trainer for the accountability.” And the reason they don’t is because, “Oh, I already pay for a membership.” 

But it’s also for someone to guide you and actually tell you why you’re doing certain movements and how this benefits your body. It’s a learning experience. It’s a place to take knowledge and walk away and be able to apply it to the rest of your life. So, my thing is, I’m like if you’re not learning from your trainer, perhaps start asking questions or find a trainer that you truly feel connected with and where you can learn, because we don’t want to be reliant on the trainer and you don’t want a trainer that wants you to rely on them. It’s all about the takeaway.

Cheryl:  

Yeah, I love that. And so, have you always done like one-on-one plus groups? Or is it all groups? Or how does that work?

Liv: 

So, I started with just one-on-one. Right now, most of my clients are just private, one-on-one. 

Cheryl:

Oh, that’s awesome.

Liv:

It’s great and we get to take time and explore their bodies and movement. And I also do semi-privates, which are super fun, because they’re still really intimate. It’s three or like, it’s between two and three people, and no more than three because that becomes a group class at that point. It’s really hard to pinpoint each individual’s needs. And they’re full-hour sessions so I can actually, you know, address people individually, even though they are in a group. But it’s super fun, because everyone gets each other pumped up, they root each other on, they get inspired when one person pushes. I encourage people to take it at their own speed. However, their friend encourages them to push maybe a little bit harder out of their comfort zone, which is also necessary.

Cheryl:  

Yeah. And you totally —

Liv:

And I do —

Cheryl:

Sorry, keep going.

Liv: 

Oh, I was just gonna say I do actually one group class a week. 

Cheryl:

Oh, okay.

Liv:

And besides my Flare Friendlies, and that’s a flexibility class.

Cheryl:  

Oh, that’s yeah. Oh, my gosh, flexibility is like the un — flexibility and sleep are like the unsung heroes, I think, of self-management. Yeah. Like, because, like on the first — like, I feel like this is my little soapbox. I feel like everyone wants to — their first two questions for lifestyle for rheumatoid arthritis are nutrition and exercise, which are both important, obviously really important. And but when they think exercise, they usually think cardio or strengthening and kind of forget about flexibility. And I know you just posted about flexibility. But yeah, like it’s really like, you know, the research is pretty strong for you to really combine cardio and strengthening and flexibility to support the joints. So anyway, not to be boring, but I just was like.

Liv:

A hundred percent. And I’m up on that box with you. I’m like, yeah!

Cheryl:  

Yeah, yes. One of the things I like that you do is you make movement fun, you know, because I think a lot of people — again, it can be, it could be so deeply, people have such a deeply emotional relationship to their bodies and to ‘sports’, quote-unquote, and exercise and like, some, like, you know, from your childhood, it sounds like you always loved moving and loved being active. I was that way too. I know other people, it can be hard if you grew up, you didn’t really like movement. Maybe you felt ostracized in gym class or something, or, you know, and then you get this diagnosis, and you hear from your doctors and your medical team that you’re supposed to exercise, but then you’re just already starting from this kind of like, blah place about like, “Ugh, one more thing I have to do,” so, you know, that, like making it fun — I guess, I’m so social that, for me, it’s just inherently like a semi-private or group is like, or a one-on-one, they’re all social, right? They’re all a chance to kind of hang out with other people and not feel like you’re just on your own.

Liv:

Totally.

Cheryl:

Yeah, but sorry, that was a little side note. But I was gonna say, yeah, one of the biggest questions people ask me — and I’m honestly 19 years into my diagnosis, I’m still figuring this out for myself because the conditions are changing and your body changes — but when to push and when to rest. Isn’t that like the ten-thousand-dollar questions.

Liv:

Ooh, yes, it is. 

Cheryl:

Like, do you have any tips for disentangling that or just empathy for people who struggle with understanding when to push your body and when to rest? 

Liv:

It just went through my brain at one time, it was like, whoosh!

Cheryl:

I know. we could do a whole episode just on that to be honest. Yeah.

Liv: 

Good. So, okay. The thing is, the reason why it’s a ten-thousand-dollar question or ten-million-dollar question, and why it’s so difficult is because it’s so different for every single person. You know, is it your, like, it depends on what joints are most sensitive for you. It depends on how consistent you’re being. The more consistent you are, the more of an opportunity you have to push. But my quote, my mantra is — and I’ll tell you why — is, “Movement is like salt, you can always add more, but you can never take away. Once it’s too salted, it’s done.” So, it’s really important that it’s kind of like when you eat, you go 80% full because everything expands. 

Cheryl:

I love that. 

Liv:

Like, keeping that intensity level at a very manageable place. And always remembering to like leave on a really positive note with yourself. Because later on, you can always add more the next day. Just because you’re not sore the next day or you didn’t push your — you didn’t go 10 out of 10 in that workout, does not mean you didn’t benefit from that workout. And I think that’s like the ableism that we put on ourselves is like, “No, I should be able to do this, I should be able to lift heavier.” And you know what? You don’t sit on your own couch, don’t sit on your carpet. You can go harder. Just perhaps today is a place to honor exactly where you’re at. 

So, and what, something they actually teach us in like, NASM curriculum is like a four-to-six-week progression. So, if you’re being consistent, after about even like, honestly, like three weeks, like, after a few weeks, you can start increasing weight. But even just the fact that NASM is teaching us that the progressions happen over such an extended period of time, it’s not a week, not even two weeks, it’s about three to four. And if you’re going really heavy, maybe four to six. And we have joint problems, and chronic pain, and all this stuff coming up for us, and so many more variables. Take your time. It is so much sweeter when you take your time. 

And you’re gonna feel it. You are going to feel that moment where, “Oh, my God, I think I want to, I think I want to like, push just a tiny bit harder today.” That’s also like trusting our gut, is like, I think when people are like, “What should I do? Should I push harder?” Like when you ask that question, if you have to ask, the answer is usually like, “Hmm, this is a really good spot. Let’s stop here.”

Cheryl:  

Well, and I think, it becomes — first of all, I agree with what you’re saying. I love the analogy of like 80% full, like stopping before you’re completely exhausted. Because for me, something that happens, for cardio in particular, is I’ll get those endorphins going and it will interfere with my ability to accurately assess whether I’ve pushed too far. So, I’ve learned that because when I get those endorphins, I’m like, “I’m feeling good,” but then later, I’ll be like, “Nope, pushed too far,” you know, so learning when. But there’s other times when it’s like, okay, I can push it a little further with, like, strengthening. So yeah, it’s really, like you said, knowing your body is like half the battle, and it takes time. It’s like a relationship, you know.

Liv: 

Yeah. And that’s why it’s so important to connect so deeply with your body. Understand, and the biggest part of knowing when to progress too, is — how do I say it — knowing how to translate your pain. Pain is your body’s language. It’s not just a warning signal, it is a language. So, if you’re like, “Well, I’m running,” you know, maybe on the treadmill or outside or biking, you’re doing some cardio, you’re like, “Well, I feel like I can keep pushing,” but your knees are kind of starting to go off. Maybe it doesn’t mean you have to stop. But maybe your muscles are getting so tight that they’re pulling at your joint and you need to stretch. So, do some troubleshooting. Understanding that the knee pain isn’t necessarily, “Oh, you’re getting a flare up,” its, “Oh, my God, my muscles are sore.” So, getting off, stretching, and then getting back on that bike or that treadmill. And then if it still hurts, then that’s when you stop. 

You know, like, be a student of your experience. I actually just recorded something for SmartSharps Bin where I’m like, “Be a student of your own experience. Constantly learn,” like ask yourself out loud, “Why is my knee hurting? What did I just do? I was doing lunges? Oh, well, my quads are really working hard. My quads are pretty tight. My tendons are probably like, firing right now. Let me stretch it out and see if my knees actually feel better.” Because I think oftentimes what happens is we freak out when those pain receptors go off. It’s really easy to freak out and be like, “Oh, my god, I have to stop,” where really, it’s important to start asking questions and getting to know your body on a biological level and on an energetic level.

Cheryl:  

I love that. Yeah, I’m one of them. I can be very self-critical at times, or I’ll be like, “Why did you push it too far?” One of the things I’ve noticed, and I don’t — I have tried to research how common this is with rheumatoid. I know it’s very common with lupus but I am extremely heat and light sensitive. And so, my capacity to do any sort of exertion is so far down when it’s hot and/or sunny. So, I’ll do things like okay, I’m — like, just the other day, you make choices, right? I went to the pool with my son. And I was like, I know I’m probably going to pay for this a little bit later, but I’m having fun and I want — you know, and then later on, I’m like, “Why did I do that?” you know. One of my mantras in those moments is like, “I am a work in progress.” I’m a work in progress, you know, and that just goes along with what you’re saying about curiosity. 

And, you know, this is, if you — one of the kind of current themes, recurring themes of this podcast, I didn’t really plan at the beginning, but is that, you know, as many times people can say it, you don’t really get it till you’ve experienced it, but having a chronic condition like rheumatoid arthritis, it’s not something that has like a beginning point and an end point, right? It’s not like, you get diagnosed, and then you just do this, you know, six-month plan, and then you’ll have it all figured out. And then the rest of your life, it’s figured out, you know? That’s what I think I — that’s what I was hoping in the beginning, you know.

Liv:

Yeah, wouldn’t that be nice? 

Cheryl:

Yeah, yeah. And some people do. I mean, like, if your medication puts you in a long-term remission, like the first six years for me, it kind of was like that, to be honest, actually. Because I was just, my medicine worked. And I was in remission. I was like, cool. This is great. But most people who aren’t in that position of remission are, it’s up and down. And you know, sometimes it can drive you batty that what works yesterday doesn’t always work today. 

But just having that mindset that this is, I’m not trying to achieve a fixed end point where I’ve a hundred percent figured my body out, you know. It’s not. It’s more like an evolution. Like, it’s like a clay that you’re molding. 

But that for me — sorry, I’m just going to tie it into mental health — as someone with anxiety, something that my therapist pointed out to me is that, like, anxiety makes you want to always have like black or whites, like have the answer. And so, having to learn to cope with those gray areas has been really, I feel like, it’s so — it was so hard to get to this point, but I am doing a lot better at it. So, yay, me.

Liv: 

Yay. Absolutely. I mean that just made me — not to like, go on a tangent, but that just like, triggered my thought about like how I got a happiness coach. A good friend of mine is a Reiki Master and a happiness coach. And it is a kind of — people are like, happiness coach? And she taught me intrinsic happiness. 

And what happens a lot with depression, anxiety, or even like dealing with chronic pain in general, maybe you don’t identify with mental health conditions, but it’s hard. 

And when you are in a lot of pain, you don’t want to be present in this moment. You start to time travel. You’d go back to yesterday or the day before and you’re like, “Oh, I used to be able to move like this,” and you get depressed or you know, or anxiety of like, “Oh, my god, I have so much coming up,” and you’re looking towards the future. 

And like, part of like my happiness coaching taught me the practice of present moment awareness and being able to come here in some of my hardest times. Like, it’s really hard. It’s not easy. Nobody’s saying this is easy. But and my partner, Cary, he made a good point. Like I said, “I’m so sorry. Lately, I’ve just been really off. I’m having a hard time being present. But I’m working really hard on it.” Because I always check in with him and tell him where I’m at. And he’s like, “Why would you want to be present? The present is really painful.” So, I was like, I love you, first of all. Thank you for understanding.

Cheryl:  

Yeah, a hundred percent. Yeah.

Liv: 

So, we try to get on this like hedonic treadmill of like, hedonic happiness, which is, for anyone unfamiliar, is like kind of like, oh, our comfort eating. Like, getting what we love, you know, the favorite things, or, you know, spending money, or like going on a trip or like this, which is all great. It’s all great; like, no shade at all. But it’s also, it’s so important to come back to ourselves first, and it could just be really hard.

Cheryl:  

Oh, my gosh, a hundred percent. That was the biggest stumbling block, or the biggest challenge for me with therapy, was I kept being like, it almost feels, at first, like abusive. I never — I’m not saying that my therapists were ever, ever abusive, but it can feel almost abusive for someone to be like, if you’re in pain, it’s like they’re asking you to feel more pain. 

At first, I was like, why? Why are you asking me to connect to my pain? That feels like you’re trying to hurt me, you know. And then, but what I realized is that their philosophy, you know is that the suffering comes from — part of suffering — comes from not being able to connect to the present and be able to fully open yourself to the present moment and give in. It’s kind of, they said it really well in one of the books I read. Of course, I can’t remember the wording now. It was something like you can’t actually give — you can’t give support to yourself or compassion to yourself if you haven’t first acknowledged what it is that your self is experiencing. You know, you can actually say, “I am in pain,” and then I’m going to actually feel this pain and give myself some self-compassion in this moment. I might also then, in the future, I’m not giving up on any sort of resolution to this pain or relief. But yeah, I realized my entire life had been led focused solely on the future. And if all that ends up doing is basically you’re never actually, you know, here. You’re always trying to optimize for a future that when it comes, you’re not actually in that moment, you’re in the future of that future, you know. It’s very meta. 

So yeah, I think, yeah, I emphasize, though, with how hard that can be, to be present. That was also just if for anyone who is experiencing, maybe they’re experiencing not like a physical pain necessarily, but, you know, I also struggle with panic attacks in claustrophobic situations, or technically cleithrophobia, which is like fear of being trapped. So, that was the same thing I had to go through with that. And I was like, again, why are you having me connect to my anxiety? Like, you want me to feel, like go into a small space and literally connect to what I’m feeling rather than running it away. But it’s like, the more you run away from your feelings, the stronger that they get in a weird way. So, when I finally allowed myself to feel the anxiety, it made me lean. My brain like connected like in this weird, like, classical conditioning way that like, I survived, you know. Like, yeah, the thing that I’m most afraid of is losing control of my mind and feeling this intense anxiety, but I allowed myself to feel it. I was like, okay, nothing happened. You know what I mean? 

Liv: 

Yeah, absolutely. It’s beautiful. It’s great. And it connects back to the previous question of like, when do we know when to progress? Well, don’t look to the future; look at right now. Look at right now. If you’re trying to lift heavy in the future, and that’s all you’re focused on, then you won’t lift what’s appropriate for the present moment. Everything comes full circle.

Cheryl:  

It’s all — I know, it’s like I have such a hard time thinking of like titles for these episodes, because it’s like, they’re all about everything. I like that movie, ‘Everything Everywhere All At Once’. Did you see that movie?

Liv: 

I haven’t yet. I know I need to. Everyone’s like, “I can’t believe you haven’t.”

Cheryl:  

It’s an experience. It’s not a, yeah, it is one of a kind. I really enjoyed it. 

But okay, I also want to ask you one of these, again, getting back to kind of the common questions people have. What are some of the biggest like myths people have about arthritis friendly or flare friendly workouts? I’m gonna mute myself so the cat — because the cat is making more noise. 

Liv: 

Yeah. Cool. Well, I mean, so I’ve had a lot of people reach out and this is why like, I brought it up as like a topic and had people reach out in regards to like my YouTube channel, and my workout links that I’ve posted, and they’re like, “Thank you so much, because every time I go to look up an arthritis friendly workout, I get senior workouts,” and senior workouts? First of all, let me make it clear, you guys, senior workouts are badass. They’re badass. And you also need to take it like, when you look at a video or a class, it is really important that you are represented in that movement. And the biggest myth, I think, with like arthritis friendly — or ‘arthritis friendly workouts’ is that they’re really easy. And they’re not. They’re only for people with like injury or pain. And really, what they — like, at least my flare-friendly workouts, they are to connect deeply to the body whether you have chronic pain, or you’re on an active rest day and you have no chronic conditions at all. I’ve always said that in my videos. I’m like, this is perfect for anyone going through a flare up, dealing with chronic pain, wanting to connect with their body, or you’re doing an active rest day and you just want some movement. It is truly for every body. 

And it’s also, I’ve found a lot of arthritis workouts that are only in a chair and like, to be real, we’re sitting a lot already. Chair workouts are amazing. And there has to be some variety. We’re laying down only — I’ve done doing like, flat on your back. I’ve done standing only. Standing only is actually really important. I got actually the most requests for standing only because I think people really just need to come out of the fetal position or the sitting position or, you know, a lot of times we’re on Zoom and stuff like that. So yeah, I think the biggest myth is that it’s easy and it’s not going to get you — it’s not going to make you — sorry, it’s not going to progress you. And actually, the Flare Friendly workouts are amazing for progressing. And that’s the whole point, is to progress you out of a flare up. And not just that, but to progress you out of the mental state and the anxiety and the stress of a flare up. So, it’s full body, mind and soul.

Cheryl:  

As you’re talking to me, I think about how often our body becomes like the enemy when we’re having a flare up. And I think that, you know, movement, exercise, whatever you want to call it, you know, for me, a lot of it has been dancing or just, I’ve, yeah, I’ve done lots of different kinds of movement over the years. But it’s a way to say like, this is not — like, this flare up is not something necessarily that I’m fighting from the outside and it’s part of me. And it can feel very empowering to be like, reconnect to your body and be like, “Look what my body can do today.” Like, maybe I can’t, you know, I was just thinking — anyway, I had a car accident in 2016 that resulted in like a concussion and this whiplash injury to my neck. And it was frustrating because I really wanted to get back into running. But for the longest time, every time I would try to jog just a tiny bit, that it would, that up and down would destabilize and make my neck pain worse again. 

But, you know, I was, like, you know what? I used to love stair workouts, like went on track and field when we would do stair days where we would go, you know, up and down the stadium stairs. And so, I was like — the way the story should ideally end would be like, “And then I realized I should do stair workouts, and I started doing them.” I didn’t do them very often, but I was like, you know, we can get so locked in, you know, locked in. I used to just love like, the simplicity of running. You just put your shorts on, shoes on, just run; you don’t have to think about, you know, “Oh, where are the stairs, blah, blah,” you know, or getting your swimsuit on to go to the pool to work out or whatever. But anyway, but my point being is like, we can be so tied to what we used to be able to do that we forget what we can do, you know. Like, I can, you know, it’s like you can’t run, then walk, you know. I can’t necessarily go on like a long, extended jog, but I can like go up and down the stairs. And that gives like the most satisfying muscle burn on the quads. And I know stairs can be hard for some people with knee pain. But for my knees, they’re not usually issues. So anyway, side note about what we’re talking about. Yeah, just it makes me feel proud of my body instead of being like, “Oh, this is like, I’m broken,” you know what I mean?

Liv: 

Yeah. Exactly. Yeah, a hundred percent. And when you say like, “I can’t do what you can,” and to a lot of people, I’d say, “Hey, join my Flare Friendly! I know that you’re in a lot of pain and like, you’re gonna get through it. Jump on my Flare Friendly,” and they’re like, “I can’t do a workout.” And that’s the whole point of Flare Friendlies, is that this is an opportunity to focus on what you can do. And the other thing about sort of modified workouts is like there’s a lot of assuming. Like, even if like I do Peloton workout, like when I don’t want to think about my own workout, I turn on my Peloton app and I just go and they will modify moves that I’m like, oh, my gosh, if I was modifying — and no shade on Peloton, I love them. But it’s just a different world. And they go to modify, and they go on their knees and I’m like, you can’t modify on your knees, you guys! Like, it hurts so bad. A lot of people can’t go on their knees or, you know, can’t even bend their joints in that direction.

So, Flare Friendlies are an opportunity. And like I was explaining before, what I didn’t find in those gym classes that I attended, it was like your body needs to match what the curriculum is. But no, the Flare Friendlies provides so many modifications and so much deep connection to the body that you’re going to start to modify the movements to meet your body and that is the golden ticket. And I want people to really take these Flare Friendlies and start feeling inspired to modify whatever workout they go and do. You go to a class, if you go to Orangetheory, Peloton, barre, whatever you do, or you do home workouts, I want you to learn how to take movements and get creative and adapt them to meet your body’s needs. Not look for somebody else.

Cheryl:  

I love that. Yeah, adaptation is such a huge, huge theme for me too. And like, I mean, in occupational therapy, like we have all these official words for different kinds of adaptations and, you know, it’s really all about just saying, okay, can I take this activity that I want to do? Can I either change — what we call — so, we have like this crazy dictionary of, I don’t want to say crazy, but this intensely detailed dictionary of like, this framework for breaking down all these activities of daily living and doing an activity analysis on them. And really, I think people who live with pain and chronic illness become their own de facto experts on this because you experience, experientially learn how hard certain things are, and you modify them. But point being, yeah, it can be hard for the untrained eye to understand like, a truly customized adaptation for somebody. 

They might think, oh, yeah, you just, okay, if your elbows or if your wrists hurt for downward dog, then you just quote-unquote ‘do this one modification’ when there’s actually like, 19 different modifications, you know, so anyway. So, no, I love it. And, you know, what I was trying too, I was thinking about a way to tie in the topic of fitness to the topic of intimacy, because that’s another thing we’re going to talk about today. I realized, oh, that the thread is like knowing your body, and then connecting to your body, and loving your body, right. It’s part of it. But yeah, I wanted to definitely give a chance to talk to you a little bit about how, you know, intimacy, what intimacy has, what does intimacy mean to you? It sounds silly. 

Liv:

Yeah. [Laughs] It’s true.

Cheryl:

Yeah. Yeah. And I know we’ve had an episode on, or just previously had an episode on a little panel discussion with like, Ali — actually, I wish you were there, now that I think about it, but I don’t think I knew you back then — and a few others talking about, you know, relationships and sex and intimacy with chronic pain, with rheumatoid arthritis. So yeah, feel free. This is your time to share your journey. Yeah.

Liv: 

So, all the — I think, what you asked, like, “What does intimacy mean to you,” is such an important question, because you can’t assume that it’s the same for everyone. But I think the umbrella feeling is like, trust. And even when it’s intimacy with yourself, it’s like, I trust that this is what I want; I trust that this feels good. I trust that I feel safe, I feel good, I feel like this is what I need right now. This is what I want. And intimacy with a partner is so important. And I hear so often that like, people’s partners — and it breaks my heart, and I want to like jump in and be like, and talk to the partner and be like, “Hey, look.” I’m a fixer.

Cheryl:

Totally.

Liv:

I’m a total Aries fixer. But it’s so important to have intimacy with our partners, because having that interpersonal connection is so deeply connected with pain management. And you can be as simple as like, “I’m having a shit day. I’m in so much pain.” And they go and make the day fun. And they’re like, “Let’s go —,” okay, this is my own life, “Let’s go to Costco. Let’s go on a beach walk,” you know? Because you don’t always have to do everything alone. And I think that intimacy also allows us to start being able to ask for help. Being able to communicate, being able to be intimate with somebody, communicate your needs, understand and learn what to do to, understand and learn what you want in that moment, allows you to take that into the world. And say, like, maybe you’re in the workplace and be like, “Actually, this is uncomfortable for me, do you mind if we change the shift?” And that’s where like, the kink, and like, BDSM, and like, stuff like that, and exploring together is so beneficial. And I think that sex, intimacy, especially when you start to play with, you know, kink and stuff like that. It’s so in — intertwined. Is that my word? Intertwined.

Cheryl:  

Yes. Yeah, I think.

Liv:

Intertwined with pain management. 

Cheryl:

Yeah, no, this is really, really fascinating to me. And so just, I’m gonna have a little, you know, content warning on this, just for people who might be listening, you know, with younger kids or whatnot, that this is going to be like an adult conversation. And, I mean, it’s — I never thought to connect the self-advocacy when you explain to your partner like what you want or what feels good, I never actually thought about connecting that before you said it to like, advocacy or communication about your wants and needs in other contexts. But it makes so much sense, you know. And I think you have to believe that you deserve pleasure and you deserve — and that’s something that I struggle with at times, being like — I don’t know. I can’t put my finger on it, but just being like, you know, I deserve, like, I mean, just a really frank example would be like, when I was younger, you know, in my sex life, it’d be like, sometimes I’d be like, “Oh, you finish. Like, I don’t need to have an orgasm, you know, it’s okay. Like, no big deal,” like, I’m like, you know? And then I’m like, no, I deserve to have one too, you know? 

Liv:

Hell yeah. 

Cheryl:

Yeah, it’s so interesting. And it wasn’t like I had poor self-esteem. It’s hard to explain a little bit. But yeah, I would love to hear more from your journey. I don’t personally know too much about kink and BDSM. So, can you explain a little bit like what that is and how it’s helped you in your relationship in your life?

Liv: 

I’m so excited for this. And honestly, like, this is the first time I’ve actually talked very openly on this platform about it. I’ve talked about it with friends, like, in those spaces, but never on here. So, I’m very excited for that opportunity. I think it’s so important. It has a lot to do with being, again, a student of your experience. And I’ll tell you, I am very new to kink. I’m very new to the world. I’m not like some veteran whose doing this for years. And that’s why I feel so passionately about sharing it, because I’ve had RA since I was four and I’m 32 now, and this is the first time I’m experiencing like this, this sense of like — like relief, almost. And so, I honestly, like, I’m trying to figure out where to start. So, in my life — kink is different for everybody — but in my in my world, like Cary and I play with, you know, like Shibari, which is like rope time. We play with like, collars and restraints. And we do a lot of spanking. Like, I am a total like, especially because I am a business owner, I’m a go getter, I’m outgoing, I’m extroverted in my entire life, I love being submissive in the bedroom. I don’t have to make decisions, I don’t have to like — I get to sit back, and we also get to explore this experience. 

And Cary loves being dominant. So, we are very compatible. And that’s the other thing, like you really have to be compatible with your partner and explore that. And if you’re not compatible, like that’s totally fine. And so, he has been the first partner I’ve actually really explored kink with. And I realized that going into it, I would use a language like, “No, this hurts, I can’t,” even if with general penetration like, because, you know, you get sensitive and people with chronic pain on a science, like a biological level, because we have chronic pain, our pain receptors go off like that. They fire immediately. Our nervous system is at like, it’s very much higher than the normal person or the everyday person. So, and he actually asked me like, “Hey, like, when you say no, or like, and that’s the end, I have a hard time understanding where to go next. And so, if we could maybe work on saying, ‘Hey, this is uncomfortable. Can we do this instead?'” Like, we literally played with even language, learning how to talk to one another in the bedroom. Like that, you know. So, where am I going with this? This is where my brain fog fails my memory. So, this is so, it’s such a broad topic.

Cheryl:  

No, but I think there’s a huge difference between saying, “Oh, I don’t like this,” to, “This doesn’t feel good. But I think this would feel better.” Like, then you do become, even if you’re used to being the leader or used to being the dominant person in all of your other areas of your life, and maybe you want to be a little bit more submissive in the bedroom, but it can still be very empowering. Because to say that and because it it’s predicated on you knowing your body and prioritizing your own pleasure, you know, I think, again, that’s what’s taken me — and I think some of that for me was the sex ed that I got in high school, which was very much like, “Boys want sex. It’s up for — girls have to like run away from them,” because it’s like Pepé Le Pew. It was essentially like, “Sex is for boys. That feels good for them. We have the power to give it to them if we want to. It’s scary because you might get pregnant and get an STD.” Like, nothing at all was about pleasure or about — it was like, it feels good to men.

Liv:

Fear, fear, fear. 

Cheryl:

Yeah, it was just so fear based. I was so scared of sex. Like, it took me so long. And I had the most amazing, patient partners in the past, like nothing bad to say about any of them. Everyone has helped — over the years — me understand that this is not just, obviously not just about you know, like the Pepé Le Pew thing, but about like, oh, I get to have fun. I didn’t literally didn’t even know that it felt good for the longest time. Like, not after I started having sex, but like, after just the sex education was so not pleasure-based. It was so scary and fear-based. Anyway, sorry. That’s my story. 

Liv:

No, a hundred percent.

Cheryl:

It was like, oh, this is for me too. Like, and even like, I remember the first time my partner said to me, like, they’re like, well, I — you know, when I did that whole thing of like, I don’t know what my complex is. I’m like, okay, you can fit. I think for a while before I really realized how to achieve, or quote-unquote ‘achieve’ or get an orgasm for me, it felt like too much work. I was a little bit like, it’s fine. We don’t have to have an orgasm every time. The first time my partner said like, “But I want to be able to. I want you to do too.” Like, I don’t feel like — it wasn’t like about pleasing them. But it was almost like, oh, this person prioritizes my pleasure. And that felt more intimate to me too, instead of, again, pleasure is something that I have the power through my vagina to give to a man. [Laughs] Like, I’m the pleasure giver, they’re the receiver, period, done, you know? So, sorry. So, that’s, I don’t really — I can’t really necessarily direct that to like kink or anything. But it’s about the communication part in the intimacies.

Liv: 

No, it’s very true. And it’s like, allowing yourself to receive. That’s like the starting part of it. Like, it’s the learning how to receive and, like, he loves understanding and learning about my body. And I’ve never really had a lot of partners that like, wanted to learn so much and actually be like, take the time. Like, it’s always so quick. Like, sex is always so quick. It’s like, you get it in, you come, you’re done. Like, take a nap. And for us, it’s very — and they say, like, sex is adult playtime. So, get into your playfulness. And so, yeah, it’s all about receiving and then that communicating of like, “This is what I want, this is what I need.” And it totally translates to when I’m having a bad flare day where I’m like, “Hey, like, this is how I’m feeling I just want to let you know in case like, you feel my energy being a little bit different. And this is actually what you could do for me today. If you have energy, I would love it if we could, like make a meal together, or like if you could do dinner tonight.” It really does come full circle, pun intended.

Cheryl:

I get it. [Laughs] 

Liv:

Yeah. The other part of kink is also knowing how to relate your pain to something else. So, when I — what was it, I was recently triggered into like a safety mode where I can’t remember what happened, but I was like, “Babe, I feel myself really turned off. My libido is low. I’m reacting to things. I’m uncomfortable. I feel myself protecting myself.” And I realized — I was like, “I think I actually need like a sexy time session with you so I can get a little bit of relief.” Not just intimacy, but like, I need to relearn that I’m safe. And so, we had like a Shibari session. And it was like, we took our time, it was cute, like listened to music, like all this stuff. And like it really truly helped me. And it’s because like when, like being tied up, for example, let’s just focus on that. Like, being tied up and restrained, like there is a bit of discomfort that that you start with. You’re like, oh, my God, my shoulders are like one way or like, this is really tight. And then you start to kind of like breathe and relax into it. 

And Cary really helped me breathe. Like, I’ll say, “Oh, my God, this is uncomfortable,” and he said, he actually said because my hands were like back here and he’s like, “Do you mind if we wait like just a moment and just see if you can sink into it and like, breathe? Because we’ve been here before. And you specifically, like, you asked for the session so we can lean into feeling safe. Do you want to give it a minute? I can also untie you.” And I said, “No, you’re right. I am gonna give it a minute. Thank you,” because I was — I felt that come up with like, I don’t want to be here. I feel unsafe. I need to feel like safer. And actually, after one minute, I felt fine. Everything’s actually okay. And he knows me well enough to ask those questions at this point. And so, you go into like, like once you start to sink in, you start to go into like this subspace where you’re really relaxed. It’s kind of like, I don’t know the word, but it’s very just like calming. It’s you’re submissive and you’re submitting not just to the person, but you’re submitting to the experience. And for me, it’s like submitting to everything that I fucking carry all day, every day. And like, I’m also with somebody that I deeply love and trust. And that’s all I know, is that I’m submitting, I’m releasing, I’m surrendering. And I’m with somebody that I trust. And all of a sudden, I’m like, floating. 

And if you ever said it, like, listen to Rachel Bachmann, and she’s a pain management doctor, she works in pain management. But she explained to us, how — and this is where I learned it from — how our pain receptors go off of like three different categories, so biopsychosocial. And so, and she explains like why women give birth, and it’s so extremely painful, but they’ll do it again. It’s almost like they forgot how much pain it actually was. But it’s because the results made you so happy that those pain receptors are no longer telling you this is something — it’s not like burning yourself where it’s like, “Ouch, don’t do that again,” it’s actually like a really happy thing. And so that’s why being social is so important, it can actually decrease our pain receptor activity, is being with friends. And so, when you’re with a loved one, and you’re intimate and you feel safe, all that pain, the tightness of the rope, all of that actually becomes a pleasure. And I build like, through that, you build a new relationship with pain, and that has been so enlightening for me. It has been such powerful relief of pain, both emotional, mental, and physical. So, yeah.

Cheryl:  

Yeah, no, that’s, I’ve heard that before about the intertwining of pain and pleasure. It’s so fascinating. For me, personally, I’m like, my mind is being blown because being tied up is literally like cleithrophobia, you know, fear of being trapped. But it’s in a safe environment where, you know, the person will untie you, I know it’s different. But I’m like, I wrote down the word or typed as you were talking, ‘surrender’, because that was something that my therapist and I did work on with my cleithrophobia, is like being like, this is the moment. Like, this is the moment I’m in. Can I surrender a bit to it? And it’s so not my default state. Like, I definitely fight, you know, I’m a fighter. I feel like I’m a fight or flight, I want to get out, you know. Get out, get out. I guess that’s flight. Sorry, I’m a flighter. I’m a flighter, not a fighter. And I’m like, get out, get out, get out, get out. Or, I want to fight the feeling. I want to make the feeling go away. So, but yeah, I can just imagine how if you’re able to intertwine pain and pleasure after thinking that pain is something you need to run away from for so long, to be able to say, this is different. This is a different experience. It’s not necessarily something I need to fight against or run away from. That it can be actually part of my pleasure. That’s totally — it’s a paradigm shift, as they say.

Liv: 

It is. And I cried a lot in those situations. And it wasn’t like, oh, my God, I’m crying because I don’t want to be here. I’m crying because I’m like, I feel so safe. I feel it’s like this intrinsic feeling of like, I live a life of chronic pain. I live a life where sometimes I feel trapped in my own body. And now I’m like, using my body to release all of that, and I love my body so much. And there’s just like this really deep thing. And sometimes it’s just plain fun. Sometimes it’s not all that. 

Cheryl:

Yeah, yeah. Yeah. 

Liv:

And other times I’m like, holy shit. Like, I lay there afterwards. And they’re — in BDSM, there is like, you know, the dominant person, when that person is in that submissive state, that subspace, you have to nurture them afterwards. So, like, he’ll untie me and I’ll be laying there and I will sometimes like cry and release, and he’ll just nurture me, make sure I’m okay. Like, rub my muscles and check in and see how I’m feeling. And yeah, so all everything I described, it increases our intimacy everywhere, like in our entire lives.

Cheryl:

Wow.

Liv:

So, it’s really, really cool. And I think that more people are more kinky than they even realize. It can be really scary to explore it first off. And you also need to have a partner that’s willing, or if you’re in an open relationship, or poly, or anything like that, you like go to a party. And a lot of these parties aren’t necessarily just like, “Oh, my god, like, sex,” but it’s like, it’s a learning experience. It’s playful, it’s welcoming, it’s nurturing, and stuff like that.

Cheryl:  

No, thank you. Thank you so much for sharing. It’s definitely something that, you know, I don’t have a lot of experience with but that I am, I’m always basically, like, you talked about earlier about having a curious mindset, you know, being curious about your body, curious about your pain, and I’m always, I’m very, very curious how different people achieve a good life with pain, you know, a good life with rheumatoid arthritis. And so, this is obviously, you know, something that helps you a lot. And I know there’ll be people listening who are like, “Oh, I’ve always wanted to look into that, but I’m a little scared about it,” or whatnot. And now, hopefully, you’re helping it become more normalized. So, thank you.

Liv: 

Yeah. And sex is necessary. Sex is healing. Like, it is our natural urge. And it’s, like a lot — I’ve had a lot of people who would just be like, “Oh, well, like we just don’t have sex. Like, I’m just not that kind of person,” it’s like, honey. Yes, you are. Yes, you are.

Cheryl:  

I think there are some people who are more asexual, but, you know, and that’s okay, too, to know that. But it can be from a place of knowing yourself and truly feeling that versus feeling afraid of sex and be like, I’m asexual because I’m actually afraid, or I’m afraid to engage in it. I think, you know, that’s something I can kind of identify with. At times, I’ve been like, oh, you know, it’s, it’s not — I don’t know how to put my finger on it. I think it’s I got so ingrained. I’m such a goody two shoes, it was like, “Sex as bad. It’s what bad girls do. If you do have sex, you’re gonna get pregnant and get an STD,” and like, it took me a long time to kind of unlearn that. So, I was kinda like, not for me. Like, not gonna worry about this for a long time. 

Liv: 

That’s so hard. I mean, society places so much stigma and pressure on women. And on top of that, that’s why like, I think sex is such an important subject for us to talk about openly, because a lot of autoimmune and chronic conditions affect mainly women. So, there is a connection there. And it’s really easy to feel unsafe. And I think that’s really normal for all of us. And I want anybody listening to know that like, if you felt unsafe, it’s not you. It is like, your feelings are valid. It’s a really tough thing to navigate. And it’s really possible to navigate.

Cheryl:  

Sounds like you have such a great partner, too, that has, you know, just helped so much. And that’s so, so important. So, I’m glad that you found that. 

Liv:

I’m very lucky.

Cheryl:

Yes. Unfortunately, I have to start wrapping it up, just timewise, I know, for both of us. But I always like to ask at the end, like what are some of your words of wisdom or advice for the newly diagnosed people out there with rheumatoid arthritis or juvenile idiopathic arthritis?

Liv: 

Yeah, newly diagnosed. Well, like, you know, it’s whether you’re new or a veteran, like, always be a student of your experience and start asking questions. Find community. Find community that, whether or not — definitely find your chronic community, and also like, build your general community around people who are rooting you on, lifting you up, always cheering you on. And just know that your pain is not the end of the road. It is a learning experience. It is a journey. And there’s so many people who are ready to be on that journey with you.

Cheryl:  

I love that. Yeah, I can’t tell you how many times I see on social media, especially on Facebook groups, people who are like, “I just got diagnosed like, is my life over,” or and I want to validate — it can feel like your life is over, or your life as you knew it, the things you might have expected or hoped for the future, are probably going to have to change a bit. And that’s just reality. But that does not mean it’s over. It’s different. So, different doesn’t mean over.

Liv: 

For sure. It’s okay to mourn your past. 

Cheryl:

Yeah. 

Liv:

And also drive forward to the future. Quantum emotions.

Cheryl:  

Oh! Woah, you just laid another layer. Woah, broke the space time continuum. Yay, I love it. And then, is there anything else you wanted to say before we wrap up that we didn’t get chance to say yet?

Liv: 

Oh, my goodness. Not that I can think of, but I do welcome people to like — I’m an open book, so if anybody wants to ever reach out and chat about the subjects we talked about today, from fitness to kink and intimacy and anything in between, I am always happy to be a part of your team.

Cheryl:  

Oh, that’s awesome. And so, you’re on Instagram at @MovetoLiv, like the word ‘M-O-V-E-T-O’ and then ‘L-I-V’, right? And you’re also on Facebook at that. And then you have a YouTube channel. 

Liv:

I do have a YouTube channel. Yeah. 

Cheryl:

Yeah. So, I’ll link to all of those. But thank you so, so much for your time. I know, like you said, you hadn’t talked about some of these topics earlier. So, I appreciate you being open to talking about it here. Because again, I think it’s really, this podcast is really just about sharing people’s true, you know, authentic life stories, and what is helpful for them, so I appreciate you. I’m so glad we finally got to talk.

Liv: 

Yeah. Well, I appreciate you providing the space. I truly, truly appreciate you providing the space and the platform and spending this time with me. You are amazing.

Cheryl:  

You’re amazing. And I was just thinking, you know, I did my grad school in the Bay Area, and I’ve been wanting to go back and visit some time. So, I’ll definitely — 

Liv:

Come on over. 

Cheryl:

Yeah, come on over. So, I’m just inviting myself. 

Liv:

I hope so. 

Cheryl:

Yeah. Yay!

Liv:

My door is always open. 

Cheryl:

Oh, thank you so much. All right. Well, we’ll wrap up for now. Talk to you later.

Liv: 

All right. Thank you, bye!