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how mindfulness helped paulina reconnect with her body and thrive with rheumatoid arthritis - picture of two fair skinned women with brown hair
Patient Stories, Podcast

How Mindfulness Helped Paulina Reconnect with Her Body and Thrive with Rheumatoid Arthritis

7 months ago
53 min read
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Summary:

Mindfulness seems to be a hot topic in chronic illness circles, but many wonder: what does it really look like in practice? On episode 125 of the Arthritis Life Podcast, Paulina Buryzynska shares how self-compassion and mindfulness help her thrive with rheumatoid arthritis. She also highlights the importance of reconnecting with her body after experiencing a period of dissociation as a coping mechanism for pain. 

Cheryl and Paulina discuss the power of non-judgmental awareness and loving curiosity in navigating emotions and thoughts, as well as acceptance. They also emphasize seeking support while navigating the challenges of chronic illness. 

Episode at a glance:

  • Diagnosis Story: Paulina was suddenly diagnosed with rheumatoid arthritis in 2014 at age 18, after waking up with painful, swollen joints which impacted her ability to function as she previously had an active lifestyle.
  • Mindfulness and the Nervous System: Paulina discusses the role of mindfulness, spirituality, and nervous system care in her journey towards well-being while living with rheumatoid arthritis. She emphasizes practices such as meditation, affirmations, and loving curiosity in supporting mental and emotional health.
  • Finding Support: Paulina highlights the importance of connecting with others who understand the experience, providing validation and encouragement.
  • Thriving with arthritis: Cheryl and Paulina discuss the importance of pursuing activities that bring joy, surrounding oneself with supportive people, and finding meaning and purpose in daily life.
  • Paulina’s words of wisdom for newly diagnosed patients: Don’t stay alone, reach out to support. 

Medical disclaimer: 

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

Episode Sponsors

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

Speaker Bios:

Paulina Buryzynska: 

Paulina—Polish roots, English upbringing, and now living in Germany! Diagnosed with Rheumatoid Arthritis in 2014, currently in unmedicated Remission. As the leader behind a global wellness movement, she’s uniting conscious women worldwide through the Wellness Sanctuary & retreats. Supporting people in breaking free from family cycles and people-pleasing habits, paving the way for resilience. With a dash of nerdy nervous system practices and a sprinkle of spirituality, Paulina guides her tribe to wake up feeling light and joyful every day.

Cheryl Crow

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

Full Episode Transcript:

Cheryl:  00:00

I am so excited to have back on the Arthritis Live Podcast and one of my most repeat people, which is so great, Paulina Burzynska. Can you give the audience a quick introduction to who you are like where you live, and what is your relationship to arthritis? 

Paulina:  00:18

Yay! Hello back. It’s so good to be here again. I’m Paulina. I was born in Poland, raised in England, but I live in Munich, Germany. And I was diagnosed with rheumatoid arthritis in 2014 at the age of 18.

Cheryl:  00:37

Wow. And, you know, some of the people who’ve listened to the previous episodes with you, I will link to those by the way, the famous Methotrexate Panel Chat, which is my most downloaded one on YouTube, or most viewed on YouTube, in one of the top three most listened to podcasts, but also a couple of others. And but can you, you know, for anyone who hasn’t heard yet, summarize your diagnosis journey. And it’s hard to summarize it, but whatever you want to share about it.

Paulina:  01:10

Yeah, totally. So, I guess the shortest summary when it comes to my diagnosis, per se, was that it didn’t happen gradually. My condition. I think, like, this is something that I find differentiates my journey from a lot of people who I’ve spoken to, have heard about, for me, it literally happened overnight. So, I was an 18 year old who was working in corporate so I had a full-time job that I had to drive to 40 minutes by car with. I was a partner dancer, which I still do, but I was doing it a lot more regularly back then, so pretty much twice, three times a week in the evening after work, come home, eat, go out dancing and doing that sort of thing. Very sociable, going to the gym, very active. I mean, I was an 18-year-old working and doing all sorts of things. 

And then literally — and it seems like a lie when I look back at it, but it really isn’t — I woke up one day, and I had swollen finger joints, my wrists were all swollen, to the point that it was so painful, I couldn’t do my buttons up. I couldn’t even open the door to the house with the keys. I literally remember knocking at my neighbor’s doors to be like, like, please help me I can’t even get inside the house. 

And then, I just went to the doctors in England I was living in England at that time. Unfortunately, the GP system there is not like your house doctor, your family doctor’s not really the best. At least it wasn’t back then. And it wasn’t in my area. And so, they prescribed me paracetamol and ibuprofen and was like, “This will just get better and just take this every day for two weeks.” 

Well, I didn’t, obviously. And then I went back and the same thing again. And they didn’t want to test me. So, I had to go to the emergencies. Because when you go to the emergencies, and the doctor there sees you and they prescribe, like a test or something, then your GP takes you seriously. And they’re like, “Oh, okay, let us really look into this.” And that’s basically what happened. I went to the emergency, sat there for God knows how long and eventually the doctor saw me. He did the tests. Like, he touched me as well like, which my GP never did. He never touched my swollen joints either. And then he prescribed that I get more tests done. And the GP then took that more seriously. And that’s when I was diagnosed with seronegative rheumatoid arthritis, actually. So, it was more through speaking to a rheumatoid arthritis doctor about my symptoms about my, yeah, like what I’m feeling, because the blood markers weren’t really showing any thing.

Cheryl:  04:06

Yeah. And I think it’s such a strange thing where, you know, you present at such a young active person, and a lot of times the doctors think, or they’re trained to, like, if you hear hoofbeats think horses, not zebras. I don’t know if you’ve heard that phrase, but and it’s really frustrating because, like, it’s not normal to wake up one morning with especially bilateral joint pain on both sides of the body, the degree of swelling you had. 

So, I’m sorry you didn’t get taken seriously, earlier. And, you know, for those who don’t know, a physical exam is a really important part of the diagnosis, usually done by the rheumatologist because they have like extensive training. Like, my rheumatologist, you know, she’s feeling the precise angles when she, you know, they’re like, I was like, wow, you must have a — you have like magical fingertips because she’s able to just tell like so quickly with her. They’re trained in that physical exam. So, it’s not just blood work as your story shows, it’s the physical exam and the pattern of symptoms, too. So, that’s a lot. That’s a lot. And what was your treatment journey like over the last number of years living with this? 

Paulina:  05:19

Yeah.

Cheryl:  05:19

Years, a decade. 

Paulina:  05:22

Oh, my God. 

Cheryl:  05:23

I just realized that, yeah. 

Paulina:  05:25

Oh, my God, you’re right. Wow, I didn’t, that did not even somehow compute into my head. 

Cheryl:  05:32

Yeah, I know. It doesn’t feel like 2014 was 10 years ago, in some ways. But yeah. 

Paulina:  05:37

Wow. Yeah. 10 years ago, and I kept thinking is was like 7 years ago. I just stopped at 7 and then I just stayed there. Okay, so 10 years ago, yeah, my treatment journey’s been all over the place. And I moved countries midway through that as well, which made things even different. But initially, in the beginning, when I finally got taken seriously, and I ended up at my rheumatologist, the first thing that I believe they do for everybody in the UK, at least, and this is what happened to me, too, I was put on methotrexate. I can’t remember how much, I think it was 25 milligrams every day. It must have been a high dosage. I remember also — not every day, I think it was like every week. Yeah, every once a week. Yeah. 

But I was also on steroids. And I remember taking them more frequently. Because I mean, yeah, it was like such a huge flare up right from the beginning. And they were trying to manage that. And in that moment when I actually got the diagnosis, and I could finally sort of understand what’s happening in my body — well, not really understand, I kind of knew what to Google. I knew what to research because nobody in my family, nobody that I knew in my life, in my world, ever had rheumatoid arthritis. So, it’s not even something I had any knowledge about. 


So, yeah, I received the diagnosis. I was put on methotrexate and steroid. And I immediately went into Google. I was like, full on search mode. What the hell? What do I do? What is actually really going on? And I think the fact that I am very naturally persistent, and I naturally don’t give up, I just didn’t give up on myself. And I was like, okay, this is the medication that they’ve given me. They’ve told me that this is the medication I’ll have to be on for the rest of my life. That’s not something an 18-year-old likes to hear. 

So, I was like, okay, well, there must be something else that I can do. And I really don’t know where that thought even came from. Really, I can’t even tell you. Because at that point, I’ve never been to therapy. I’ve never done any self-development work. I was never, like, looking after my health as I understand it now. So, I really don’t know. It was just sort of something that inside of me knew that I needed to do.

Cheryl:  07:59

Yeah, that, well, I think that it’s, I think that that you mentioned that, you know, you’re a very persistent person. And it sounds like very thorough. So, I think it is a natural question many people come up, you know, come up with pretty quickly in their journey is, is there something else I could be doing? Either alongside these medications, or instead of the medications, you know. It’s, I think, it’s a very natural question, right. So, it’s one that I think a lot of people, a lot of people are hovering in that Google search bar. It’s the one of the ones that are searching that makes sense to me.

Paulina:  08:32

Yeah, well, it had to make sense. This is what this is, where I am at now. So, it had to make some sort of sense. And it was there for a reason. But yeah, so through that search, I discovered things like actually eating things that are anti-inflammatory and eating in a way that supports my body’s function rather than just eating for eating because I’m hungry, which was all that I knew at that point. Or movement, like what really is it. I just knew about the gym and building up and building muscle and being all sorts of stuff like that. 

So, I really quickly started implementing those changes and because I never really did anything like that before, in terms of even nutrition, I feel like that may have given me such a huge benefit because it was sort of like all at once I was doing something my body was clearly begging for. And six months down the line I, without even negotiating this with my doctor, just stopped my medication. Please don’t do this.

Cheryl:  09:36

Do not recommend but, you know, we’re all human. And this is why we share the stories, you know, to see this is the real world. They call it like ‘medication noncompliance’ in like the, you know, in the medical world, but it’s, I mean, it’s common to try. I’m like such a brown noser, like an A-student where I’d be like, “No, I have to talk to the teacher first and ask,” but a lot of other people are more going rogue.

Paulina:  10:03

That’s definitely what happened to me. I was like, no, I trust myself, I started all these supplements and vitamins and food and everything. It’s like, now, I’m going to stop this medication and just see what happens. Because I was feeling good at the 6-month mark, because I was on high-dose medication. However, I managed to stay in remission for two years. So, I don’t know, I don’t advise anybody to do this. But somehow it just ended up working for me. And then, two years later, so I was in remission for two years, I changed countries. I moved to Germany where I am now. And now with the knowledge that I have about stress and our nervous system, and also, immune conditions all intertwined, I can very strongly say that the stress of moving, new country, new language, new people, and really not knowing anybody just gave me the biggest flare of, like, ever. It then jumped from my hands into my ankles, my elbows even more, so like in areas that I never felt it before. 

So, I very quickly found a doctor here. Luckily, the system seems — and so far, I’ve had much better experiences here, I feel actually looked after and listened to much more than I did in the UK. But I, again, it’s about trial and error, finding the right doctors, and again, staying persistent about that, too, to make sure that we find someone like that. And here I was put on methotrexate again, but on an injection form; whereas in the UK, I was given the pill form. They don’t do that here. They actually more go towards injections than pills. Which was scary for me because I was like, okay, that’s better. But injections? By myself, to myself?

Cheryl:  11:58

Am I allowed? Yeah, I remember that being weird, but yeah, if you’re listening, a lot of people don’t know that if you have nausea, specifically associated with taking the oral tablets and methotrexate, that nausea usually goes away when you — or it gets a lot less — if you take the injection, in injected form. So, that’s a quick, there’s not very many quick swaps in rheumatology, but that’s one. So, yeah.

Paulina:  12:26

And I definitely felt less side effects with the injection. So, I actually stayed on that for a few years, and then it stopped sort of working, I started getting flare ups more frequently. So, we changed into a biologic. We changed for Cimzia, which I was on for two years, worked like a magic thing. It just helped to sort out all the flares I was having with methotrexate. It clearly was a good change. 

However, and I spoke about this in our last episode with the girls catching up as well, however, I got a really weird symptom of like back, ribcage pain that I’ve never had before. And obviously that worried my doctor a little bit because it was very aligned with the change of medication to Cimzia. So, then, because of that and talking together, we changed me again to Rinvoc, which is one of the newest medications, at least here in Europe. I know that in America, they’ve used it a lot longer than they have been in Europe. 

And then I was back again. Cimzia was also an injection. And then, Rinvoc was again a pill form and oral form. So, that was also another change for me. And I was on that for around a year. And that is daily. And it helped. Again, just like in a week’s period time, all of those pains I was having, again, with Rinvoc it just sort of managed to help me very quickly. So, I feel like my journey with treatments was very positive in the sense that whatever I was put on, I seemed to feel better after. 

And a huge celebrationary moment, which I also shared last time in our podcast, is that since October — so, we’re in February right now as we’re recording this — but in October 2023, so just a few months ago now, I stopped taking Rinvoc as well. And now, I’m in sort of unmedicated remission, one can say, and spoken to my doctor about this.

Cheryl:  14:30

Yeah, as let’s say and that is, you know, it is the way to do it is to do it, you know, in slowly stairstep ways from what I understand in conjunction with your doctor and it’s not, it depends on so many variables, you know, whether you’re seronegative or positive, how severe and aggressive your RA has been, but it certainly is possible for some people to slowly wean down and sustain off of their medications and sustain the remission. Again, it’s not like in my case, it’s not something that my body has ever shown it will be able to do so far. But in the future, it could happen, you know. So, it’s, you know, anyway, but back to your story. 

So, that’s, yeah, I think I was just thinking back to when I got diagnosed in 2003. And I thought — I just laugh sometimes, I mean, in a compassionate way, how I kind of thought that I would just be on these two medications the rest of my life, like methotrexate and Enbrel. I just really didn’t know how common it was to have to do this guessing game or switching or it works for a while, and it doesn’t. And so, for anyone listening, I know that can be a little stressful to hear. But it’s definitely like knowledge is power. And like, for me, I wish I had known so that I didn’t take that initial 6 years of medicated remission for granted, because I just thought it was gonna last forever. 

Paulina:  15:54

Yeah, and I think this just proves again to us how important it is for us to stay persistent in finding the right doctors. And by the right doctors, I mean, the ones that we feel comfortable with. Because the moment we trust a doctor, and they trust us, this is what happened with me and my doctor right now. It’s like we both trust each other. And I know she is helping me because of all of her knowledge and expertise. But she’s also learning from me, because I am the one experiencing all of this. So, there has to be communication between us both. And thanks to that, we were able to be like, okay, let’s try this out nice and slow, like you said, let’s try it out. Let’s see what the body responds to, and see how it feels. And we work together through this.

 So, it is stressful, like you said, to see that there’s so many medications and so many changes that could be happening in our medication journey and treatment journey. But if we focus on finding a doctor that can make this at least a little bit easier for us, it makes such a huge difference.

Cheryl:  17:01

Absolutely. How I’m curious, how did you find your doctor? Did you have to do some trial and error? Did you get her from word of mouth?

Paulina:  17:11

I feel very lucky. I’m very lucky actually. So, I moved here and to Germany. Here, when you want to see a specialist, you don’t have to go through your GP, you don’t have to go through your family doctor. Like in the UK, you have to go there, then they recommend you to somewhere else. Whereas here, you’re able to just make an appointment. However, you can’t just make an appointment to a rheumatology doctor because the waiting times for new patients without any recommendation, like, from a different doctor, are months and months apart. 

And I was completely in a huge flare. I couldn’t walk. I was limping everywhere because of my feet and hands and everything swelling and flaring up. So, I knew I needed sort of like a quick fix, let’s say, and I went to an orthopedist. Yeah, orthopedist, because he’s one of the ones that we can get an appointment to very fast. And he had contacts. He literally, with me sitting in the room, he called his friend or, you know, friend’s doctor as they have each other’s contacts and just explained the situation that I’m in. And I went to her the day after. I had to wait a very long time at her, let’s say, eating waiting area clinic, because she was seeing me in between patients and in between appointments. But because he called her, she was like, okay, this, this woman really needs like my help. So, let me fit her in quickly for five minutes in between the patients that she was having. So, I feel very lucky. And I’ve managed to actually go to the doctor, which I didn’t know at the time is the head of the clinic for rheumatoid like from rheumatology. So, I feel very grateful, very lucky that I managed to land on one that I feel good with. 

Cheryl:  19:03

Yes, well, that’s a great, you know, I often tell people to, if they’re looking for like a physical therapist or occupational therapist, ask at your rheumatologist office who they tend to know and refer to and, like — and so, that’s a great, on the other side, if you want to find a good rheumatologist, you can ask the other specialists that tend to work with them, like, physical medicine and rehab doctors who are also called physiatrists or orthopedists, I think that’s a great tip. You know, I think, I don’t think, yeah, it’s not the most normal situation to have them immediately call like the best doctor ever, and getting the next day but it’s, you don’t know till you try, right?

Paulina:  19:39

No, and it’s true. I mean, yeah, I haven’t had this experience of let’s say looking or trying to get a good doctor when it comes to rheumatology, but I have in other areas. So, let’s say gynecologist, I am still trying to find one that I fully trust and can go to. So, I sort of understand it and the different sort of way from a different doctor, such that it applies for, and I know how — it’s just a, let’s say, a lucky game or a trial game. But yeah, like you said, Cheryl, you will not know if you don’t ask. And the only thing that can happen is that they will say, “No, sorry, we don’t know anybody,” and nothing changes then. But they could say that they know somebody, and you might be like a little step closer to actually finding someone that you also feel good with.

Cheryl:  20:29

Yeah, yeah. It’s, really, it’s a beautiful thing when you can find such a good relationship with a provider. I didn’t realize how lucky I was. And it was just the first person my general doctor recommended me to, you know, it just, I didn’t do any research. I didn’t, just took it at face value. She’s good enough for you, if she’s good enough for you, she’s good enough for me, you know, and I immediately loved her. So, yeah, you know, being lucky, highly recommend. 

No, but so the other thing we were going to talk about today is you, you know, you and I were chatting the other day about how sometimes you can feel like your rheumatoid arthritis is a bit of like a blessing in disguise, which is a hard thing to say or communicate about, because you don’t want to say that, like, I’m so happy that I have this, like, no. 

But given that, like, it had to happen to me, I can feel grateful for some of the things that it’s brought to me. So, I’d love to hear more about what you’re thinking about related to that question.

Paulina:  21:30

Yeah. And I, everybody listening, I said to Cheryl just before we started recording that I’m becoming a little bit more brave in using that phrase, that this diagnosis of arthritis was actually a little blessing in disguise for me. And it means, it means so many things. But I think when I — and now that I realize it’s been 10 years — now that I look back these 10 years, and I am able to see the struggles that I went through, the pain, like the actual, physical pain, the emotional discomfort that I was dealing with, it is actually thanks to them that I was able to become the person I am today. 

And the person that I am today is resilient, is persistent even more. I don’t let people walk all over me. I am so much better at listening to my body signals and understanding what they even mean. And so many people don’t, so many people — and I find it, especially outside of the chronic illness community is, so many people are so out of tune from their bodies. And I feel like we were not really given a choice. So, we had to learn this very fast. 

And that is such a positive thing. Because I’m able to wake up, check in with myself, and through that check in of what’s going on physically, mentally, emotionally, I’m able to give myself more of what I need. And that’s like one aspect of that is a blessing. Without that, it would be so much harder to show up for myself, to take care of myself. 

People outside of the chronic illness community that I have a lot of professional but also personal contact with, they get sick, let’s say they get a cold. They get a flu. They end up in bed for a week. And they have no idea why that happened. They have no idea what they could have done to prevent it. They have no idea, actually, that the first day that they feel better is not the day to go full on power. But actually, you know, give your body a couple more days rest. And we, and by we, I’m mainly referring to the chronic illness community, we’re sort of in a position where we’re able to — and we get there. This is not something we get from the first day, right. But this is something that we very much just have to learn. We, and we’re a little bit more aware on how to support ourselves, support our bodies, whether it’s a flare up, or whether it’s like a sniffle coming on. Immediately, I feel like we sort of know what to do. We need to rest because we know that our body is going to benefit from that. So —

Cheryl:  24:22

No, keep going. Sorry. I’m just agreeing.

Paulina:  24:24

You’re just agreeing, love it. And that’s like one of the biggest parts for me. But the second one that became very obvious to me quite recently is friendships and relationships. As a person living with an autoimmune, there are and there were more often in the past, days where I had to cancel plans. Or I couldn’t schedule my calendar, because I either ended up in a flare or I just was exhausted, like, physically fatigued, tired, and I needed the time for me. And that very quickly, like, weeded out the friends that were not really friends. And yes, that is so damn hard. It is so sad. You go through, I went through so much grief about that, about friendships ending, friendships changing. It is not an easy thing to go through. None of this is, really, and none of life is, really. Everything it can be, and we go through really challenging moments in our life. 

But if I’m looking at it from this lens of it being a blessing, I very quickly learned what it actually truly means to have true good friends around you. And that’s an amazing thing. Because now, when I meet people and they are supportive, they’re accepting, they understand change of plans, that I don’t feel like I need to lie to, to explain that, oh, actually, I just want to stay in my bed and my Snuggie all day, like, there’s actually no other reason why. I want to see you. But equally, I just want to stay in my bed today. And that’s just what’s going to benefit me a little bit more at this moment. So, when I meet people where that I can say that to, that accept that, and our friendship doesn’t change. Because of that, it makes that friendship so much more valuable. And I’m able to be so much more grateful for it. And that is all thanks to living with a chronic illness that I have to learn from and listen to every single day.

Cheryl:  26:41

I feel similar. I felt like in the past, I wanted to always be — I defined my worth as, like, I want to be the friend that’s always dependable, that helps other people. And I wasn’t as, I wasn’t vulnerable, really. I mean, I was and where it’s, it’s complicated. At times, I would be vulnerable. If it was really, if I felt like it was — if it was bad enough, like, going through a breakup, I would be vulnerable with my emotions or something. But like in general, I feel like I wanted to be the helper. I didn’t want to be helped by friends. 

And I don’t know if you’ve had the same. I’m seeing you’re nodding. But it’s like learning to letyour friends be there for you when you need help it. It’s a gift to them as well. Like, we let humans, you know, if you love someone, you want to help them, right. But why is it so hard? I don’t know if it’s an American thing, maybe, you’re nodding so it’s just a person thing. We’re raised to think it’s, oh, you’ve got — especially as a young person, like I was 21 when I was diagnosed, you know, I gotta be independent, you gotta do things, you’re on your own. It’s hard to ask for help, but it can bring you and your friends closer.

Paulina:  27:43

Oh, totally. I am a recovering people pleaser every single day of my life. And again, this, let’s say, recovery of being a people pleaser, of really just wanting to help someone else. And I come from a childhood where emotions were not really a thing. We weren’t really allowed to feel bad. It was just, everything’s okay, and just smile, and everything’s fine. So, that was also the conditioning that I was very much in. And yeah, so, I was wanting always to be there for other people. Nobody would really truly know how I was feeling because that’s not important. I’m good, I’m fine. The thing, chronic illness, came along, and it’s very difficult to be that way. You try and you end up flaring, and you end up even more tired and exhausted. Not even just physically but mentally, it puts such a bigger strain, I feel, at least it did for me. So, again, when that started happening, because not everything changed the moment I got the diagnosis, like, I mean, I’ve been living with this for 10 years. So, it is a slow, gradual. But I really want to say, a beautiful journey of growth, of getting to know ourselves. And yeah, eventually now I’m at a point where I’m able to be honest about how I feel to the people that I trust, to the people that I don’t trust and I don’t want to build that relationship with, I also just don’t anymore. Whereas before I would sort of force myself because Paulina needs to be there for everybody and everybody needs her support and help, when chronic illness helped me say ‘No’.

Cheryl:  29:34

Yeah, yeah, it’s really a remedy for being a people pleaser. But I still struggle. I mean, I’m like that I actually made at one of my New Year’s resolutions a few years ago, I think it was the year before COVID, to like stop saying ‘Sorry’ at my medical appointments, because at that point, in the mid 2000s, I went through a whole bunch of stuff. Like, I had a car accident and concussion, whiplash injury to my neck and my jaw, and then I got this pilonidal cyst on my tailbone. It had nothing to do with any of that, that just was random that usually happens to like older hairy men. They’re like, we don’t know why this happened to you. 

And then, I’m laughing, but it was horrible. And then I had delayed wound healing from that. And then — that was all within 12 months — and then I got a GI virus that was so, that Charlie and I both got. We were throwing up, having diarrhea. He was hospitalized at the Children’s Hospital for dehydration. He was just under three-years-old, and I was super dehydrated. And then, my stomach had a gastroparesis flare, this is on top of having rheumatoid arthritis. But point being. 

So, I had, I think I remember I sent out like 32 holiday cards, because again, I’m stubborn like you, I’m like, I’m not gonna not send holiday cards, even though I’m literally, we can’t function to do anything right now. And there were different medical specialists, 32 different cards to different medical specialists to thank them for helping me in that year 2017. 

But I remember like, so I was still going to appointments and stuff to recover from all that. And this is why I don’t have another child. I have one child. Who knows if I could, I mean, I assuming my fertility would have still been there, you know, we would have had another, that was our plan. Our plan was to have another baby. But this all stuff just kept happening to my body. And then it was like, well, I’m now you know, 39, 40. I don’t feel like that sort of decision anymore, we don’t feel it’s the right decision anymore. But long story short, this is all leading to this point of saying ‘Sorry’. So, you’re looking, you’re nodding to be like, oh, my God, you went through so much. And then, I’d be at the appointment. And it’s like, if my issue wasn’t easily resolved, or if like, they’d be like, “Have you tried this?” And I’d be like, “Sorry, yeah, I have.” But you know, I’d be like, sorry, I’m sorry to be complicated. I’m sorry I’m still in pain. I was like, why do I keep saying sorry? And it’s not my fault. It’s, they’re here to help me and I’m wasting time and wasting their time and my time saying ‘Sorry’. And I need to also give myself permission to not be sorry to someone else for my pain, like, you know what I mean? So, anyway, it’s complicated. 

Paulina:  32:03

Totally. But there is just, even in the way that you’re saying this, there is so much power that you get to feel the moment you pause, and you just don’t say that word. 

Cheryl:  32:17

Yeah. Yeah. 

Paulina:  32:19

Like, that is gonna give, hopefully, you so much more like inner strength of, like, actually, I’m standing in my truth right now. And my truth is, I’m not sorry about that. This is just not the right phrase right now. I feel like also, and I don’t know, maybe this is a British thing or an American thing. Because I went, I had a similar conversation about this, when it comes to ‘I love you’, the phrase ‘I love you’ or ‘I love’. And I feel like the British people really diluted that word. It’s like they love everything. They love tea, and they love the weather. And they love this. And they love — 

Cheryl:  32:58

I think I do that. I’m guilty of that, for sure.

Paulina:  33:03

I feel like maybe if I just linked that back to your story, the moment that you or me stopped apologizing for things that we’re not really truly apologizing for, then that word will become a little bit, like, more meaningful again, rather than diluting that word.

Cheryl:  33:23

Mm-hmm. Yeah. Like, I’m sorry, I have one more question. Like, okay, just say what you have. Because it’s, like, if there’s one thing of recognizing the humanity of a provider, of a medical provider and understanding that, like — and that’s why I get tripped up, because I understand, for as being an occupational therapist, I understand the pressures that some of the medical providers are under. 

And so, I’m like, oh, I wish I could just be, you know, I wish I could just be an easy patient. The other day in one of our Rheum to THRIVE support groups, people were like, can I just have a day where my condition is just straightforward? Like, can I my body just follow the textbook for one day, and not have every day be an exception, you know, but that’s not the case, the cards we get dealt sometimes and accepting that goes a longer way than trying to deny it, I think, or submerge it. 

The other thing I was going to ask, back to your initial point about being better at listening to your body signals and having a more, I would say, maybe it sounds like more mindful, deep relationship to your body, I’m curious if you ever experienced something that I experienced for a few years, which was actually — what’s the word — detaching? Becoming detached from my body? So, I was not actually connected to it as like a coping mechanism for being in pain. What’s the word for that? I forget what the word is. Where you —

Paulina:  34:50

Yeah. It’s like —

Cheryl:  34:53

Yeah.

Paulina:  34:54

It’s like detachment or numbing or, I mean, out of the body. Yeah, yeah. Totally. Have I experienced that myself? I feel like I haven’t. Maybe I did in the beginning of my journey, maybe this is why it’s hard for me to remember because again, zoned out. I would have zoned out, and I wouldn’t have remembered it. Because I know that there are a lot of parts, let’s say, of my childhood, I had a very complicated childhood, kind of. People looking from the outside would say that it wasn’t, but it wasn’t a healthy dynamic in my family. 

So, I actually, I was 21 when I moved to Germany. And when I looked at my life before the age of 21, everything is very blurry. I don’t remember a lot. So, I also know that this is a coping mechanism. It is our nervous system saying this is too much pain or too scary; there’s too much, or whatever. And it just decides to forget about it, or zone out of it, or not even be aware of it. Because I know that it doesn’t sound like it’s actually a helpful thing. 

But our nervous system and our body just wants to protect us. And that is this option that it takes as our as the supporting mechanism for us in that moment. So, rather than sort of now feeling bad about that, and saying, oh, like, what did you do, nervous system, to remember things. Actually, it’s a good thing, because it was too much for our system to handle. 

So, I know this now, obviously, professionally, this is also something that I’ve learned. And I’m able now to let’s say speak about this also more from a professional knowledge as well as this personal experience. So, I wouldn’t be surprised if there are days or moments or even stages of our journey with a chronic illness where that happens, where we kind of zone out and dissociate.

Cheryl:  37:05

That’s the word, dissociate. I was looking, yeah, dissociate. It’s really, really common. And like you said, it’s an adaptive evolutionary thing for our brain to say, okay, we are in survival mode. We can’t, our brain can’t pay attention to all this pain right now. But then, long-term, like I remember one time I therapist — I’m like, oh, my gosh, my therapist has been very patient, you know — was like trying to get me to get in touch with my body, and especially actually for anxiety a lot, not just for coping with chronic pain. And she was like, “Where do you feel your anxiety?” And I was like, “It’s in my brain.” I literally said this. This sounds like a joke. But I was like, “It’s in my brain. That’s where my thoughts and feelings are.” And she was like, “No, but in your body.” I was like, “Well, my brain is in my body. So, it’s like in the head.”

Paulina:  37:59

[Laughs] Oh, my God. My brain is in my body. That’s so —

Cheryl:  38:02

She was like, okay. Do you feel any sensation in your body? I’m like, what? That thing that I dissociate from? No, nothing’s going on there, you know. Took me a long time to realize, oh, yeah, like, I could feel a little bit of chest tightening and my shoulders, you know, getting a little bit tighter, or my muscles tightening around my shoulders and my neck. And I feel like my breath increasing a little bit. I feel a little sweaty. But I honestly did not, was not in touch with the physical, my physical body. And I think, actually, my therapist also said that this is somewhat common with former athletes or current athletes that you have to learn how to push, quote unquote, ‘push through pain’. And so, I’m like thinking about different times when I’ve been so tired. And I’m like, we got 15 minutes left on the soccer game, you have to just not think about how, you know, your lungs hurt, your muscles hurt. But I just want to address that because for some people might think oh, my gosh, like Paulina’s saying she has a better relationship with her body, but I feel like — and it’s not about comparisonitis, right? We’re all different. But it’s normal to go through periods where, like, now I am more in touch with my body. But there was a period where I was dissociated. That’s the long, short story long.

Paulina:  39:15

Totally, totally. And I think that what helped me, or instill, what really helps me stay more in tune with my body and not — I don’t want to, I’m not sure ‘jump’ is the right word here but not get into that dissociative mode is, again, through the support of a therapist. Through meditations like guided meditations. Mindfulness, spirituality, and nervous system care is something that I live and breathe every single day right now. And that is something that really highly supports me. I think that humming to myself, and sort of even just meditation, for me, affirmations work very well, just like reaffirming things in my mind to tell myself that feeling into my body and feeling this pain, or this last shortness of breath, or like whatever anything that you’ve just mentioned now as well, any tingling or sweating, really any sensation, that it’s safe. That it’s okay. That it’s like coming from a loving place. That I just want to lovingly be curious about this. And maybe that then supports my body to be like, okay, let’s stay in this. And like, let’s explore this a little bit more, rather than jumping into that dissociative fear mode. Which, again, it takes time for us to come out of and this is done with the support of a therapist. 

And for me, I’ve worked with therapists about not just chronic pain and arthritis, but also, let’s say childhood related situations and things in life in general. But now, at this point, 10 years into this journey, I’m gonna say — I’m gonna keep repeating 10 years, because that’s incredible — 10 years into this journey, this is still something that supports me on a daily basis. Before I check in with my mind, my body, my spirit, I always come into that place of loving curiosity first, to make sure that I’m not analyzing for good and bad, but rather I’m just being open and curious. And yeah, kind of accepting for whatever comes. Because I know that that knowledge of whatever is present will help me decide, okay, do I have a longer walk today? Should I go into nature? Should I meditate a little bit longer? Should I maybe journal about this a bit more? So, whatever sort of check in it is, it’s coming from that loving, curious place, not a good or a bad judgmental place. Supports me because I know that it’s going to give me a bit more knowledge on how I can show up for myself a bit better, how I can take care of myself a little bit better.

Cheryl:  42:06

I love that phrase, a loving, curious — ‘coming from a loving, curious place’. And I think there’s this misnomer about mindfulness-based practices which are misunderstandings which I used to have. I used to say, well, I can’t meditate because I’m too, my brain is too hyperactive, I can’t relax, like, it’s not going to work. You know, which is weird, ‘cause I’m usually really positive. But it was a very, like, pessimistic outlook, but it was maybe from a place of understanding my native brain’s, like, proclivities, right? I do tend to be a little bit tangential, have lots of thoughts, and have a hard time funneling them down into, like, let’s say sentences now, just kidding. But I want one that was explained to me, the true root of it, like you just said so beautifully, is non-judgmental awareness, and that metacognition of saying, like, instead of being the self, I’m gonna take a moment and be like the observing self, like a little Cheryl sitting on a little cloud above me looking down and saying, like, “Oh, she’s having thoughts, like, let’s look at those thoughts with this curious, like, she’s having this thought, let’s just notice them,” like, these little thoughts are little leaves on a stream, or they’re clouds in the sky. 

And it’s such a beautiful thing, because you can have lots and lots of thoughts. Like, I do, I have a lot, I think my brain is very active. But that practice of instead of being — in ACT, in Acceptance and Commitment Therapy, they call it ‘fused’, like when your fuse to your thoughts, versus ‘de-fusion’ when you just recognize that these are all thoughts. Again, like the leaves in the stream are like the clouds floating in the sky. It’s a less stressful experience, I think. It reminds you that these are all, the thoughts are just thoughts, thoughts are thoughts, not facts, you know? And I think that’s blending the self-compassion is we would the way — you said loving, you know, loving, not just curious, like, I’m a detective or I’m a scientist, I’m curious about these thoughts. Like, I’m lovingly embracing and allowing these thoughts. That’s just beautiful.

Paulina:  44:12

Thank you. Yeah, this self-compassion, loving curiosity, it might have started for me in the journey of exploring my physical sensations and pains and discomforts. It then flew into discovering what’s in my mind and the thoughts that I’m having, the way that I talk to myself, the way that I talk to others. And then it actually just, like, spreads to everything in my life. And it’s so possible. Like, every interaction that I have, be lovingly curious about it. Everything that I learn. Every challenge in my life that I have. There is an opportunity to come to it with a compassionate, loving, like, a compassionate, loving curiosity. And learn from it, but not in a way of judgmental good or bad. I think that that is a very, it’s a place that we can get to very easily. This judgmental — and there’s a marking, this saying this is good, this is bad. But if we can practice coming into self-compassion, it can give us a lot. It can support us a lot. 

Cheryl:  45:28

Yeah. Well, this might be redundant question. But going into the concluding questions, I have a couple — I call them rapid-fire, but they’re not always quick. But, you know, what words of wisdom would you give to someone newly diagnosed with rheumatoid arthritis today?

Paulina:  45:48

Don’t stay alone. Reach out to every person that you can possibly reach out to. Doctors, like, you’re on this podcast, you’re listening to this. So, you’re hearing this answer. Reach out to Cheryl or I. You don’t have to be alone in this. And it is a very alone, scary journey in the beginning for a lot of us. And just to talk with somebody can be very supportive. It was for me, and it still is. This is why I’m still here so many times.

Cheryl:  46:17

Yeah. No, that’s beautiful. Absolutely beautiful. And do you have a, on a totally different note, do you have a favorite arthritis gadget or tool in your toolbox?

Paulina:  46:28

Okay, I had a little think about this question. I used to have so many. Now…

Cheryl:  46:38

But sometimes you don’t need them. And that’s okay.

Paulina:  46:40

Yeah, actually, okay. So, from the past, my biggest tool, one was something that I was, I believe, given — I can’t remember by who, maybe a physiotherapist or maybe somebody else, I’m not sure. I think to open the doors. Like, a thing that the key enlarges that I can grasp more, that was so helpful because I could actually enter the house. So, that was one of the biggest tools. And now because I practice yoga quite regularly, it’s wrist supporters, like wrist gloves. Those are with me every day.

Cheryl:  47:18

Yeah, that’s awesome. I just bought some of those as I’ve been doing some weightlifting lately, strength training, which has been really fun. And yeah, those key grips, they give you a wider lever to twist so you don’t have to use as much grip force. It’s awesome. Do you have a favorite — this is just because I love pop culture. And I love books and movies and shows. Do you have a favorite book or movie or TV show that you’ve consumed recently?

Paulina:  47:46

Oh, recently, it’ll definitely be ‘One Day’. 

Cheryl:  47:51

Oh, I don’t know what that one. 

Paulina:  47:53

The Netflix series? Oh, my God. Most emotional, romantic, sad series if you want to have a little cry, instead of about you but about somebody else’s life? 

Cheryl:  48:06

Oh, no, I want to. I know. It’s like, I’m like, oh, I hate it when the people who should, like, I don’t know what the tragedy is, but I can’t stop watching those kinds of things. Oh, my gosh, that sounds amazing. Oh, I’m just looking at the — is it the same guy from Red, White and Royal Blue? 

Paulina:  48:27

Oh, I wouldn’t know. 

Cheryl:  48:29

That was really good. That was a really good one. Okay, do you — oh, this actually relates what you’re saying earlier about you have a lot of good mantras. Do you have a favorite mantra or one that you’d want to share with the audience? Or affirmation?

Paulina:  48:47

Maybe one that I’m reminding myself of more recently is that whatever I’m feeling right now is okay.

Cheryl:  48:56

Mmm. Yeah. It’s so simple but so hard to do. You don’t — that’s one of the things that I remember reading in one of my trainings on Acceptance and Commitment Therapy that it can be very, when you start learning that skill of metacognition, thinking about your thoughts and looking at them from that detached standpoint. It can be very destabilizing, because then you’re kind of like, it becomes philosophic. Like, what’s real, what’s not? What is life? So, if you don’t pair it with that self-compassion, that loving kindness of like, okay, these are all thoughts and things I’m thinking about and feeling and they’re all okay, it can be very disorienting. So, I think that’s beautiful.

Paulina:  49:40

Yeah, and for me, it was a lot of my journey with rheumatoid arthritis with childhood related therapy. It was a lot based on suppressing my feelings and not letting myself feel whatever I was feeling whether it was anger, frustration, sadness, happiness and joy. Like, I couldn’t get into that intensity of any of these emotions because I just, again, was more of a people pleaser rather than staying with what I was feeling. So, for me, it is really important to keep reminding myself of this. Like, it’s whatever I’m feeling right now, it’s okay to feel that. If I feel angry at myself, it’s okay to feel this right now. And I’ll come out of this, but let me stay in this for a little bit and see what’s happening. So, yeah.

Cheryl:  50:27

It’s, I mean, I can’t imagine the hill that you’ve had to climb for that because I had a very, very supportive, you know, very untraumatic upbringing, you know, with my family. I mean, my therapist referred to them as like a positive outlier, you know, if those who’ve listened to Episode 100, that’s my interview my parents. They’re just amazing, amazing people and but there is something that I picked up on, not from them necessarily, but from the culture at large, which is that, like, that people pleaser in me figured out pretty quickly that like being a good girl, and being a good citizen in the classroom meant, you know, sitting with your hands folded quietly in your lap, only ever showing positive emotions, you know? And yeah, it’s not okay. I mean, like, my parents would always come from me if I was crying or anything like that. But just in general, I felt a pressure to only feel positive emotions. And I don’t know if you can pinpoint where that was from. But I think it’s such a beautiful process as an adult now and parenting my own child, there’s a whole other level where you’re like, I’m allowing you, I’m letting you know, like, a toddler tantrum, like, your feelings are okay. It’s okay to be sad. It’s okay to be mad. It’s not okay to hit people, you know. So, having there be boundaries around what’s acceptable behavior, but all emotions — it’s so radical to say that all emotions are acceptable and fine. That is completely a radical thought, you know?

Paulina:  51:59

It’s insane. It’s crazy. But it is so, so healing to get that, to be there.

Cheryl:  52:07

And once you start finding it, it’s like, I’m so annoying now. Like, I don’t, I have to bite my tongue so often, because when I’m watching my son, like, you know, at, like his music lesson, or a sports thing, I’m like, I want to rephrase what the coach says or the teacher says, because I’m like, oh, you’re like, so close. But you’re telling them like, it’s not okay to be frustrated, but it is okay to for him. Like, if you’re trying to play a piano and you play the wrong note. It sounds bad. And it’s frustrating.

Paulina:  52:36

Yes, like, yes.

Cheryl:  52:39

So, let him feel that but let them know that it’s not okay to quit, it’s okay to take a minute to catch your breath. And, you know, all that kind of. Anyway, sorry, this is — what is something that’s been bringing you joy recently?

Paulina:  52:56

Being surrounded by the right people. And let me expand on the right term, being surrounded by inspiring people, by people who are lifting me up, who are in some way doing better than I am so that I can learn from them. I can be in their space, be in their energy, be in their world, and notice how supportive they can be to me at that same time, as well. And that has been my highlight for the past, let’s say, six months, it’s something that I’ve discovered that I finally have. It’s something I’ve struggled with for my whole life, to have real, supportive, uplifting, real friends, like, real people, real humans, and not ones that are toxic, or they’re only there when they need it to be and, you know, all sorts of people. So, actually, now, I feel like I have a handful of people that are such incredible human beings, and I feel very grateful to have them in my life.

Cheryl:  54:08

That’s amazing. It’s amazing that you have that and that you’re so appreciative of it, you know, don’t take it for granted. That’s beautiful. This can be interpreted a lot of different ways. And there’s just two more questions. One is would you do anything differently if you were diagnosed today?

Paulina:  54:31

No. No, I feel like everything had to happen the way that it did in order for me to be here. And yes, maybe there are things I would have changed to make things easier for myself. But if I just think about that as a possibility, then I wouldn’t have learned everything that I would have, that I learned through the hardships, through the challenges. I went out there, I seek support, I immediately went onto Instagram as well to, like, look for people out there. You know, hashtags are amazing for this, to find people with random hashtags that you would have never searched for, like ‘chronic illness’ or ‘rheumatoid arthritis’, like these are things you search for when you are really wanting to find people like that. And I did that. So, I think, no, I wouldn’t necessarily change anything.

Cheryl:  55:26

That’s beautiful. And the last one is, what does it mean to you to live a good life and thrive with rheumatoid arthritis?

Paulina:  55:35

To live how I live now.

Cheryl:  55:38

That’s amazing. You’re only 28. And you’re like, so, like, I love it. You’re so evolved.

Paulina:  55:45

Yeah, it’s been a journey for sure. But what does it mean for me, it means to spend most of my days, or most of, let’s say, a life. But and life I really mean like the hour of each day, or the days of each week. Spend them doing the things that really uplift me, that bring me joy, that light me up, that make me feel warm inside. There will still be moments, right, and hours in the week where I have to do things that I don’t necessarily love and enjoy, like doing my taxes. This is not something I love and enjoy. And I’m thankful that of the time, in my day, in my week, I get to do what I really love. I get to see the people that I really want to see and support myself in ways that I want to support myself in and continue checking in with myself in terms of, yeah, physically, mentally, emotionally, spiritually, how am I doing. And this for me means, yeah, living, and thriving, and feeling joyful with rheumatoid arthritis as a diagnosis, but it’s part of my life. It is not me. It is part of everything that’s what’s happening in my life, too.

Cheryl:  57:09

I love it. I love it. I mean, that’s, yeah, we have to have a little, like, 10-year-old birthday party for your diagnosis. I was just thinking my son just had his 10th birthday. 

Paulina:  57:21

I’m gonna look into the day that I was actually diagnosed because I don’t remember the actual date. 

Cheryl:  57:26

Get some — 

Paulina:  57:29

I’ll see if I can find that because that’s incredible if I can have a 10-year anniversary, wow.  

Cheryl:  57:34

I did that for my 20-year diagnosis anniversary in 2023. I did, like, these two big balloons that said 2-0. And it was, it’s fun, it’s nice. And doesn’t have to be the exact date, you know, I knew mine was in August sometime. So, I just did like a random day in August. But anyway, thank you so much. This has been really, really inspiring for me. And I want to make sure people know where they can find you online if they want to connect further.

Paulina:  58:03

I would love to chat with anybody. I currently — and I’d say what I do is I support women, chronic illness and non-chronic illness women, from living in high stress, trauma-based lives to actually supporting them in living, serene, joyful lives. And I do just through nervous system care and spirituality. And the best place to find out a little bit more about what I do and the magic that goes on this side of the world is on Instagram. So, you can find me on Instagram at @With.Paulina. That’s probably the best place to find me, talk to me, I am still a human, there is no team behind me. So, every message you send to me is gonna be received by me and responded by me. It’s a small enough account where I’m able to actually chat with everybody. And I love that. And that’s how I love to work and continue connecting with people. 

Cheryl:  59:07

I love it. Thank you so much. Yeah, this is, it’s been really fascinating for me only knowing you for a few years now but seeing the transformation from doing, you know, initially yoga and now kind of broadening to the work that you’re doing now. It’s been really, it’s been really wonderful getting to know you and having your light shine on my world from all the way halfway across the globe over here in Seattle, Washington. But we’ll say goodbye for now, but I’m sure I’ll see you again soon. Methotrexate Part Five. Yeah. 

Paulina:  59:41

Thank you, thank you, thank you.

Cheryl:  59:42

Thank you again. Bye!