fbpx
“Healing is a Messy Process:” Sonia’s Journey with RA and Graves’ Disease is written to the right and on the left are two women with dark brown hair
General Education, Patient Stories, Podcast, rheum to thrive

“Healing is a Messy Process:” Sonia’s RA and Graves’ Disease Journey

2 months ago
66 min read
Add comment
FacebookXRedditPinterestEmail

Listen now

Video of conversation

Summary:

In this heartfelt and insightful conversation, Cheryl and Sonia discuss the power of mindfulness, self-compassion and community in their journeys. Sonia talks about how daily gratitude, yoga, medications, and the support of groups like Rheum to THRIVE have helped her pursue joy amidst the challenges of rheumatoid arthritis (RA), Graves’ disease and other chronic conditions. 

Sonia shares how the Rheum to THRIVE support group provided her with the courage to be vulnerable and set boundaries. Cheryl and Sonia reflect on how these groups become sacred spaces where individuals can fully engage with their emotions, be witnessed without judgment, and sometimes find unexpected moments of humor and joy amidst the challenges.

The discussion offers valuable tips and relatable moments for anyone living with RA, with gentle reminders to take things one day at a time. Overall, Cheryl and Sonia encourage you to embrace acceptance and community so you can live a more empowered and fulfilling life with chronic illness.

Themes of the Episode

  • Self-Acceptance and Grace: Sonia emphasizes the importance of self-compassion, practicing grace, and ease with oneself, especially in dealing with the uncertainties and challenges of life with RA. 
  • The Power of Social Media and Community Support: Cheryl talks about using social media as a tool for patient education and support, while Sonia highlights the significance of connecting with others, particularly through the Rheum to THRIVE support group, to share experiences and support one another.
  • Yoga, Mindfulness and Embracing the Present: Sonia shares the pivotal role yoga had in transforming her relationship to her body and helping her embrace th represent moment. 
  • Coping with Rheumatoid Arthritis (RA) Through Humor: Both Cheryl and Sonia discuss the role of humor in coping with the challenges of RA, acknowledging that while it may not resonate with everyone, it provides them with a sense of normalcy and relief.
  • Daily Tools and Adaptations for Living with RA: The conversation touches on practical tools like ring splints, compression gloves, and supportive pillows that help manage the physical challenges of RA.
  • Sharing Personal Mantras and Wisdom: Both Cheryl and Sonia share how gratitude practices and self-forgiveness help them live more peacefully with rheumatoid arthritis.
  • The Impact of RA on Daily Life and Relationships: The conversation also explores how RA affects daily activities, relationships, and the emotional aspects of living with a chronic illness.

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:

Sonia-Melitta  Montoya (ella/she/her/they/), is a queer femme Chicana/Latinx movement teacher, educator, ancestral storyteller, and holistic self-healer based in San Francisco, CA. She received her RYT 200hr certification in vinyasa yoga from Community Rizing: People of Color Yoga Teacher Training in Berkeley, CA. Sonia-Melitta returned to yoga through her holistic self-healing journey while in recovery with a chronic illness that threatened her life. She gives gratitude everyday to her yoga practice for saving her life by bringing her back home to her body temple, mind, and spirit. 

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:

 Please note that a few things needed to be edited out of this episode so the time stamps are going to be a few minutes off depending on what part you’re listening to 🙂 

Cheryl:  00:00

I’m so excited today to have Sonia on The Arthritis Life podcast. Welcome.

Sonia:  00:05

Yay! Thank you, Cheryl, so much for having me on your podcast. It’s such an honor.

Cheryl:  00:11

So happy to have you. And just to give a quick introduction, can you let people know where you live, and what is your relationship to arthritis and chronic illness? 

Sonia:  00:23

Yes, so I am currently residing in San Francisco, California, and my relationship to arthritis. It’s been a little over a year ago since my diagnosis with rheumatoid arthritis. And just, I would say, maybe a few months ago, I was diagnosed in my hip joints with OA, and that’s not, you know, connected to RA, but another arthritis in addition to RA. So, that’s my initial relationship, although, since being diagnosed and talking more with my family and kind of, I think, more asking questions of like family medical history, I have learned that my paternal grandfather had a severe case of RA that no one seemed to communicate to any of us, and he’s the only one. Well, yeah, he suffered with that for a very long time, and at that time he was treated, that’s when they treated RA with gold. I didn’t even know that until I researched myself, like, the history of RA and the treatments, and he didn’t feel, at least according to my family, that it was helpful, like, it did not alleviate a lot of his pain.

 And apparently, he had a lot of chronic pain in addition to, I think, other arthritis that was also competing pain for him too. So, I guess there is a genetic, like, you know, medical line, and that’s to my paternal grandfather. And I’m the only one. I’m the only family member that we know of that has RA.

Cheryl:  02:25

Wow. And similar in my family, my grandma’s sister had RA, but no one else did. So, my, you know, basically, yeah, great aunt, I think that’s it. So, it’s, yeah, it’s really interesting, and I know that, like many of us, you also have other chronic conditions. Do you mind sharing what those are, or that is? 

Sonia:  02:50

Yes, I’m happy to. So, I was going to mention my initial diagnosis with chronic illness has been Graves’ disease. So, I have Graves’ disease and hyperthyroidism. In addition, I had found out, well, after that initial diagnosis, that I also have Epstein Barr Virus, which apparently at the time of my diagnosis, I think that was also what made my first thyroid storm to be so as major as it was, because that first initial thyroid storm, like, literally almost took my life. So, I did not find that out until months after with another doctor, when I found out that I had Epstein Barr Virus. And I also learned throughout time and meeting others in the community that Epstein Barr Virus is quite common with other chronic, other autoimmune diseases and disorders. There’s a relationship there between Epstein Barr and autoimmunity. So, I found that very interesting. 

So, yeah, and my Graves’ disease is also, there’s a genetic line to my maternal grandmother. So, all the women on my mother’s side, at least my grandmother’s generation, all of her and her sisters all have either Hashimoto’s or Graves’. So, my grandmother actually has Hashimoto’s, and then she has another sister who has Graves’, another sister with Hashimoto’s, and another sister has Graves’. And then, amongst their children, specifically daughters, it has skipped a generation. And then, their daughters, if they have multiple daughters, it skipped a generation. With my mother, she only has me, so my mom does not have, at least as of to date, she does not have a thyroid disease, but I have Graves’ disease.

Cheryl:  04:59

Wow. I mean, yeah, I think that I’ve had some researchers on that have been investigating, you know, the origins of these diseases and why they occur, and so that we can hopefully develop better treatments and cures. So, yeah, I’m just sorry you’ve had to deal with two really different kinds of chronic conditions.

And I’m curious about your rheumatoid arthritis diagnosis, specifically. We always cover on the Arthritis Life Podcast, you know, people’s diagnosis story. So, what, you know, how did you get diagnosed, and what were you feeling at that time?

Sonia:  05:58

Yeah, so I was actually coming out of a second thyroid storm. So, I had a thyroid storm in Fall, my second one. It was fall of 2022, and it was actually a chiropractor who actually caught that I was in a serious flare, because I was going in for what I thought was lower back issue, which it was, which I later found it was. But he was like, the inflammation is not going down given the adjustments. And he happened to have, his wife also had Graves’. So, he was very familiar with patients who had autoimmune disorders and diseases as especially as it related to flares. He said, like, “Sonia, when was the last time you had blood work?” And I’m like, oh, it’s been a while, I think. I mean, you know, I should. And he goes, “Why don’t you go in? Let’s stop treatment. Go in, get tested.” Sure enough, my numbers were out the roof. 

But this second storm felt very different from my initial one. And so, of course, when I found out the numbers, my care team responded very actively. And I had to take, you know, I had to take a short leave of absence from work. So, I was able, we knew what we were — I knew what I was dealing with, so I knew the things I needed to do in order to care for myself in a storm. And that second storm didn’t require me to be hospitalized like the first one. So, there were a couple days where it was close, but I was able to mitigate. Well, it wasn’t until I came out of the storm, I would say, was around Thanksgiving of that year, when then moving into the holidays, specifically after New Year’s. I was like, I’m feeling new symptoms. Something is not feeling right. I felt a lot of joint pain, a lot of hand stiffness. Like, when I would wake up in the morning, like, I’m a curler, like, I curl in a fetal position, so I’m like this. So, when I would wake up and try to, like, open my hand, it was like it wasn’t happening. And it was so painful, like, it was painful, and it was just in my upper extremities, like my joints, in my elbows, shoulders, specifically wrists, the joints in my fingers. And I was just like, I don’t feel this is related. This can’t be related to thyroid. 

So, then I contacted my endocrinologist, and I was like, something is — I’m not too sure if I’m going back into a storm or what this is. So, I contacted my endocrinologist and my naturopathic doctor, which then they ran kind of their own set of tests. And it, like, started all over again, like, all the tests again I had to go through. And honestly, I was like, I hope it’s not lupus. I don’t know why I was just like, I was just like, because it was like, I have a whole list and like, what’s the top one? And then, all the way. It’s terrible, you know? And I’m like, I really hope it’s not this and this. And sure enough, it came back that I had RA, and then it was like the whole process of finding the right doctor, you know, what do I, what’s the treatment for this? And that’s kind of what introduced me to RA and you because I was researching. 

Yeah, no, seriously, I was, because, you know, I was initially Googling, and then, just like with my Graves’, it was like I was trying to find not only resources, but also community of others to hear either stories or treatment stories, or like what other people are experiencing with RA. And I think it was something when I was researching on YouTube, I came across your channel, and I started just watching and listening to the various things that you had posted. And then, I went to your website, and I was like, oh, my gosh, this is amazing. I found an amazing resource and that you had a class and a community. And I’m like, okay, let me start here. So, then that’s how it started.

Cheryl:  10:43

Oh, I mean, it’s so good for me to hear that, because that is exactly why I started, you know, sharing so publicly about my own journey, because I know that that’s what we patients often really want. We, I mean, there’s different kinds of people, right? Some are like, just give me the textbook stuff. I don’t even, I’m not emotionally ready to hear like a personal story, or I am just not interested in it.

 But a lot of people, they want a combination of, like, maybe, you know, scientific evidence, and like, what’s the best thing to do for RA but also, what’s it like to have rheumatoid arthritis? It’s such a simple question, but it can have thousands of different answers, you know. Yeah, yeah. So, I’m sorry, that’s me just responding, but I, you know, want to be like a trusted guide to people who are initially diagnosed and provide the community support through Rheum to THRIVE. How soon after you got diagnosed did you join the Rheum to THRIVE program?

Sonia:  11:48

I think I had missed — it was fairly soon, I want to say, within a couple months or so. And I think I had missed — you had, I think you had just closed for one of, for the class, so I was like, I’m going to put it on my to do list next time it opens, then I will register and participate. And that’s pretty much what happened. 

And in the meantime, I was listening to your podcast, listening to other guests that you had on like the various doctors, the OT’s, like all the folks that you had on. And then, I think what was most helpful was like the gadgets, the tools, the resources, that like those things to incorporate in one’s daily life. Because what I was noticing is how much my RA was interrupting. I didn’t quite understand how much it was going to interrupt one’s daily function. And that sometimes it can feel, especially as someone who loves to cook and bake, when you can’t hold a spoon, or you can’t stir, or you can’t squeeze something with your hands. It’s very frustrating. It’s frustrating. It feels so discouraging, like, am I ever going to be able to cook or bake or do these things? You kind of feel helpless. It’s very debilitating. 

And that’s another thing that I had to also continue to wrap my head around, too, is that autoimmune disorders and diseases are a disability, and they’re not seen, they’re invisible. And I think that’s the piece of navigating, I think, we all navigate as people in the community, because people look at me and they see something, but they’re like, “You’re not in pain,” or, “What do you mean? You look fine,” or, “You lost all this weight,” but I’m like, you don’t even know the half of it. That’s why it’s, like, I never comment on people’s weight or anything, because you don’t know if it was intentional. You don’t know if it had to do with medication, or you don’t know if it had to do with just the illness itself. Because I am someone who’s lived through that. And so, I, by the way, I was excited to also talk to you today, because I just recently watched the ‘I am Celine Dion’.

Cheryl:  14:28

That’s on my list. 

Sonia:  14:30

Okay, no more. All I can say is, it really shows, you know, and it’s not like — probably Celine herself would say, “I’m not the only one,” and there’s many of us out there, right. For her in particular, and what she is is battling, yes, she is one of a million, you know, because it’s so rare what she is living with. But at the same time, it’s the chronic pain journey that I think many of us can connect to, can resonate with, right, and how — and she even says herself, this is so invisible. Like, it’s just so invisible. And so, but just seeing her being so open to share that vulnerability on camera of that experience is very, very raw, because many people don’t see that on the other, the other end of our experiences,

Cheryl:  15:34

A hundred percent. And I know that this is your first time sharing your story you know more publicly. And that’s a really — I just want to recognize what a difficult thing that can be, you know, it does open you up potentially, to, I don’t know, I’m a people pleaser, so sharing my story opens me up, personally, to criticism, right? Or people saying, “You didn’t do a good job. You didn’t, you’re not doing it right,” you know, “You’re too happy about having arthritis,” or, “You’re too sad about having arthritis,” or you’re, you know, like, just you’re too, you’re always too something for someone. 

And so, but I think, like, you’ve emphasized in just what you were just saying, that the vital importance of having stories to access is for newly diagnosed people in particular. So, it’s, for me, that’s what motivates me to share, despite my inherent personality, like, fear of anyone ‘not liking me’, quote unquote, or disagreeing or commenting. You’re like, okay, well, this is important. It’s important. And I know that some negativity may come from this, but the positive outweighs the negative. That’s how I think of it. I don’t know about you.

Sonia:  16:55

Yeah, I think one thing that I’ve learned is just, we’re all in this human experience, and who are we to judge that or to comment on it, right? Because, and I’m also, I’ve learned through this journey with having chronic illnesses, is that I can’t compare my experience to another person, because, and you say this, this is something that you definitely remind those who are in the Rheum to THRIVE community, that we have to speak from our own experience

. And, you know, I remind people every time this. And you say to people, this is what work has worked for me. I’m sharing this because maybe you want to try it, and maybe it won’t work, just like medications, not every medication is going to work even though, like, I know realistically, the medication I’m on currently on for RA, it’s working for the time being, and I hope it’ll continue to work as long as it can. But I also know the reality that it may stop working at some point, and I’m going to have to make a shift and change, because that’s just the trajectory of having RA and I know that’s the reality that we live with. And I’m okay. I’ve accepted that. I’m no longer like, I’ve just, like, yeah, I’ve accepted that

Cheryl:  18:22

That’s huge. I mean, acceptance is so difficult; it’s so vital. And you you touched on, actually, what was going to be my next question, which is, you know, whatever you feel comfortable sharing about your treatment story, because a lot of people, again, just they want to know  what might it look like? And you’re so right, my treatment journey, Cheryl, is going to be different than yours or someone else’s. But anyway, with all those caveats, what has your treatment journey been like over the last year and a half, I guess year and a half?

Sonia:  18:56

Yeah, yeah. As it pertained to RA, you know, I kind of went down a rabbit hole. Like, oh, what are the medications? And then, I got so overwhelmed, because there’s so many, and then I was like, what’s the least invasive? Because I’m also someone who’s very sensitive to Western medication. So, even what I chose, even how I chose to treat my Graves’ disease may not be, especially for Western doctors, they may not have chosen that for me. But I’ve also done my research, and I also know my body and know that, yeah, certain things may not work for me, and I’m not willing to try that yet. 

And so, for RA in particular, because I got so overwhelmed at the beginning, I did kind of lean into my naturopath doctor, and was just like, I’m really, because I also have incorporated so much holistic modalities and remedies into my care as well, not only just Western medicine, I’ve paired the two together because I have seen results, I have been able to reverse my symptoms. Obviously, the two things that I hold there’s no cure for them, at least not as of yet. And but I do have, in some to some extent, some control. Like, I have control of what foods do I put in my body, right, what products do I consume, right, whether it’s over the counter medications that maybe are going to be harsher on my gut and my autoimmunity versus ones that are not. 

So, have incorporated an anti-inflammatory diet, so meaning no soy, no dairy, no gluten. And the two probably most triggering ones for me is soy and gluten, especially soy. And I was a vegetarian for 10 years prior to my diagnosis, so tofu was my main resource of protein. 

So, I’m like, what now? What do I do now? And so, I went through a whole thing with that, and then had to slowly transition back to meat. That’s a whole other story. So, and that was a process under medical care, and to do that so I wouldn’t get sick because I was a vegetarian for as long as I had been. And so, like, I take enzymes for — that’s kind of how it started, digestive enzymes to help ease and to break down like the proteins, because certain foods that my gut wasn’t breaking down appropriately. 

So, I think changing the diet a lot was a huge thing. I went into a huge detox, like, I detoxed at the beginning, but in particular for so that, I think, helped me with RA, is that piece. The initial medication that I actually started on was suggested by my naturopath that was now Naltrexone.

Cheryl:  24:57

Oh, yeah, that’s it. That’s a non-steroidal, anti-inflammatory, right? 

Sonia:  25:02

Correct. And I was on, they recommend, for RA, a low dosage. And this was coming from a compound pharmacy at low dosage. So, my dosage wasn’t even at the level of what they use this medication for what they treat – 

Cheryl:  25:18

I see, but yeah, it definitely is approved just as a drug. It’s just not necessarily like the first line typically, you know, for RA. And I’ll always put the caveat in here that you know nothing that you hear on this podcast, this is in the medical disclaimer on every episode. But I should probably remind people more that, you know, it’s we’re never giving medical advice. We’re giving personal stories, because I firmly believe in, you know, in the wealth of research. 

And those who’ve heard me, my story, like word vomited a million times, I’ve been on the aggressive Western medicine route from the very beginning, and that’s what’s worked for me. But there are many different paths. And I, like, a core value for me is respecting each person’s journey and respecting how they got to the outcomes that work for them, right? So, sorry, I’m on my little soapbox. 

Sonia:  26:14

No, and I appreciate you saying that, Cheryl, because that’s important to be said. Yeah, and the medication wasn’t working. I was finding myself kind of going through up and down flares. So, I would have like a small flare, and then it would even out, and then I’d have a really big flare, and then it would kind of plateau, and then another big flare. It was just, it was too much up and down with regards to my flaring. And I was like, I came to terms with, okay, this is not working, even though I so wanted it to work for me. 

So, and that also came with finding the right doctor. So, like the rheumatologist who I was with, he was really against me taking that initial medication, even though I literally brought the clinical trial, like, I brought a manila folder with everything. And he just, like, he just shut it down. He wouldn’t even look at it, and I even asked him, like, I made copies for you, can you at least take this into consideration? Because if he had least approved it, my insurance would cover it, rather than me paying out of pocket to try this medication, which I ended up doing. So, I ended up paying out of pocket for a medication that cost me a little under $100 but still, I was paying that out of pocket. But anyway, for me, I at least wanted to say I tried it didn’t work. I moved on. 

So, I’ve been taking now, currently, since then, and I was only on that medication, I want to say, it was like six months. So, it wasn’t very long, because I was told I would know within that time frame whether the medication would really take or not, and it wasn’t. So, then I went on hydrochloroquine. So, I’ve been on low dose, and that seems, I’ve seen a lot of results from it.

Cheryl:  28:28

Hydroxychloroquine? 

Sonia:  28:29

Yeah, hydroxychloroquine. I’m sorry, some of these — 

Cheryl:  28:31

I know, It’s impossible to remember. No, I’m only saying it for the record.

Sonia:  28:37

Thank you, Cheryl. 

Cheryl:  28:38

I’m always like, yeah, well, and that’s that actually, directly, the thing with rheumatoid arthritis medications is that the ones that are specifically targeted to slow down disease progression are the ones like the conventional disease-modifying anti-rheumatics like hydroxychloroquine, methotrexate, plaquenil, sulfasalazine, and then the biologics, DMARDs, disease-modifying anti-rheumatics. 

And I am going to put in the in the comments, or the comments in the in the show notes, a link to the American College of Rheumatology treatment guidelines for rheumatoid arthritis. It is really, it is written for doctors, but it’s a guideline that’s updated every five years, typically, and it has lots of links to helpful research. 

I’ll also put an outside link to one of the low-dose naltrexone, because I’ve definitely been hearing more and more about that, and you’re right there as peer reviewed research that can be helpful, but then anti-inflammatory is not necessarily, from my understanding, going to alter the immune process, right? It’s altering the effect of the immune process, which is inflammation, but the disease-modifying ones are trying to kind of stop it before it starts. But like, and you’re saying, it was your right, you know, to try that. That’s what, that’s your bodily autonomy, right, like what you felt comfortable with, that’s what you needed to do, you know?

Sonia:  30:08

And I forgot to preface early on when you had asked me about my initial diagnosis, I think it’s also important to note that I was diagnosed within early stages of RA. So, I’m at early stage of RA. I don’t have, like, my ART, they caught it in a good amount of time. Hence probably why this medication is supporting me at the moment, because my RA hasn’t, like, progressed. So, it’s not like, it’s progressively, like, getting more severe. So, which, you know, I know that it can change throughout time, so I will say that. 

Cheryl:  30:57

No, that’s a perfect example of no two people are the same, right? Because you might have somebody who presented with, oh, I just got diagnosed with rheumatoid arthritis, but I’ve had progressive joint pain, joint deformities over three years. That person, you’re going to need to probably — or typically, again, I’m not a doctor — if you follow the clinical guidelines, you know, state to be, you’re going to be a little more aggressive in those cases, typically, versus, you know, the early, early stages. So, and I know that, you know, medications are one part of a treatment plan. 

And like you said, really, it’s funny, because I think San Francisco is kind of — sorry, I’m like, interrupting my thought process, but San Francisco is like a part of the country that has so much holistic and complementary services and complementary doctors, meaning — I also just say complementary but it’s like, you can take Western medicine, and along with that, you can see a naturopath, and you can try, you know, yoga, and I know there’s a kind of shorthand ‘joke’, quote unquote, in the rheumatoid arthritis social media community, like, “Oh, just try yoga.” But I know in your case, Yoga has been — it’s not just ‘Just try yoga’, right? It’s actually part of you. So, okay, I’ll just let you share. What have you done, you know, in a four-year treatment that’s outside of the medications as well?

Sonia:  32:24

Yeah, so with my naturopath, I’m on a supplemental protocol, which is fairly long, but most — I won’t go in detail as to each of the supplements, but what I can say is it’s guarding, it’s making my immune system stronger and guarding it at the same time, I guess, is the best way to just say is what my supplemental protocol is, amongst my supplements. And also, my doctors are aware of what I take, like my Western doctors as well. And they are, you know, in support of it as well, there’s nothing that I’m taking that’s of concern. 

So, yoga came into my field during my recovery after my first storm. So, I couldn’t physically work for a good almost a half a year, if not a little longer than that, because I had lost so much weight and in such a short three-and-a-half-month period and muscle mass, so I had a lot of atrophy. And I was in a lot of fatigue still. And so, I felt like, what can I do to move my body that felt gentle, that could build, rebuild my stamina and kind of start slowly rebuilding my muscle? And the thing that I remembered was yoga, because I used to practice it back in grad school. And I remember, and I did it just for, like, as a stress reliever, and that’s what it does do, it supports. 

And so, I just, I kind of went back into practice, but I was noticing so much more that the practice was doing for me. So, it wasn’t just the physical aspects of the movement, but it was more on a soul level. It was more on like a spiritual body, mental experience that I was having, because there was so much loss since my initial diagnosis, all the way to also my RA, just so much loss in life, as far as what was physically happening to me and also just around me in my life. 

And so, yoga was being on the mat, being in a movement, being in certain poses, was also a release. Like, there were moments when I would just cry, like just all out cry, because sometimes my body was doing something where it hadn’t been able to move that way or do that, and it was like I was in full embodiment. So, it was, I think, my tears came from either something that needed to be released that I was holding on to, or out of pure joy that my body was moving in a way it hadn’t moved in so long. 

And it was that reminder to me of how strong our bodies are and resilient they can be after going through such a drastic storm, and also can continue as many of us we just don’t have, unfortunately, just one chronic illness, as I’ve learned, being a part of the Rheum to THRIVE community. So, many of us have more than two we’re like living with on a daily basis. And so, and that brings all sorts of different symptoms along with that. And so, that’s where yoga, honestly, Cheryl, saved my life. And it also saved my life in ways on I think a mental health level that when you’re experiencing chronic illness, there are moments of helplessness, at least for me. 

There are moments like, is this going to get any better? Am I going to get any better? Am I going to be able to, am I going to be strong enough to get through this? And then, sometimes moments where you just, like, I just wanted sometimes to just give up and just let go and see what happens. And it’s just like, it’s just like there is a song that I so connected with throughout this journey, as you probably know her Avril Lavigne, who lives with, who had lupus. Her song ‘Above Water’. When I first heard it, I just listened to the lyrics, but when I saw the video, the metaphors in the video with the lyrics hit me. And so, it so resonated so strongly, I think, with so many of us who go through the various symptoms of chronic illness, that it felt like I would do practice to that song. 

Music then became a source of healing, being on my mat and movement. There were particular artists that just was all healing to me, like Florence and the Machine, Avril Lavigne. There were all these people that I would practice to that were just like, were released, but also a source of empowerment for me to like stand in my power in certain poses. Like, warrior three became like my pose and like certain poses that I would do was like my movement. Even when I would go to classes, even the teachers started noticing, this is Sonia’s pose, because they would see a difference in my body in a particular pose, right? 

And I could really feel it and really embody where I’m at, and all the ups, and all the ebbs and flows of that of the ocean, of the water. And sometimes, I’ve also realized sometimes just being in shavasana, just being in corpse pose, is really all you need to be, is just to be held by the earth. And sometimes, that’s the only pose that is there for you in that moment, and that is okay, if that’s where you’re at. 

So, I felt like yoga, and the wisdom of yoga, taught me to just be. To be in all the unknown. I’m still working on, like, the impermanence is, I think, the piece that is a daily practice for me to be in, like, acceptance.

Cheryl:I want to make sure to ask, on a practical level, there are so many different types of yoga. There’s hot yoga, there’s the yoga at your local YMCA, versus the yoga maybe at like, a, you know, a different philosophy or kind. So, can you — this is a weird way, anyway, I’m judging myself for how I asked this question. But can you, like, what kind of, what was your entry level, you know, into yoga? And is there a name for the type that you practice?

Sonia:  40:54

Yes, it was Hatha. So, Hatha is more gentle, it’s more of a gentle style of yoga and then, but the yoga that I got trained as for my teacher certification, is Vinyasa, which is more dynamic. So, it’s like ongoing movements from like up-down. Vinyasa can also have moments of gentleness as well, depending on how it’s put together, the movements. But I would say I flow between Hatha and Yin yoga. Yin yoga is also known for gentle. And then Vinyasa, generally, is known for more dynamic, ongoing movement in the flow, which lately has been for me, since RA has been challenging because it’s hard for me to go from up-down, or to do certain things in an accommodation can be a struggle. So, I have been judging myself a lot just in my practice, like I’ve been on a hiatus from teaching, because I have been in my own head in my practice. 

And I think this is where, especially here in the West, yoga is seen as a particular body type, or like to be able to do a handstand, or to be able to be in my crow pose. Like it’s, you know, it’s what you see on Instagram or what you see in, you know, and that’s not yoga. Yoga is an embodiment with your body, right? It’s that. It’s the wisdom. 

Someone reminded, another teacher had reminded me when I was kind of sharing with her some discouragement that I was feeling, and she was like, “You are practicing yoga, Sonia, right now, you are in that practice, because what you’re conflicted by, that is the wisdom of the teaching and what it’s teaching you, and that it’s okay to be where you’re at,” right? It’s okay to modify. It’s okay to have props. I mean, props are there for a reason. It doesn’t say anything less about you in your practice, or even those of us who are yoga teachers that props are there for a reason, and it’s to support us. 

Just like gadgets and tools that we use, right, to support us, they’re there for purpose. And so, I think it’s kind of us just kind of letting go of and me letting go of, oh, yoga is supposed to look a certain way, or to be a certain way, or to wear a certain pants. It’s not, that’s not yoga at all. It’s that you can do yoga at any size. You can do yoga whether, you know, in a wheelchair, you can do yoga in a chair, you can do yoga laying down on the floor. You can do yoga in your bed. You know, you don’t have to do yoga in a way of like being on a mat, being able to stand, going to a a seated position. It’s so much more than that.

Cheryl:  44:26

Yeah, I really loved, I had Dr. Steffany Moonaz, she is the yoga teacher and author of ‘Yoga for Arthritis’, which is like a website and a series of videos, and she defined yoga as a philosophy, not an exercise. And she said yoga is means the union of body and mind through movement, breath, and mindfulness. And I was like, whoa. That is so much deeper than I thought yoga was.

 And I think the same issue or this, I often say the difficulty with acceptance-based practices for people in pain is that the last thing you want to do when you’re feeling pain is connect to your body. It’s very unintuitive, right? You feel like my ancestors did not probably be like, “I’m in pain. Let me sit here and connect to it,” like they probably were like, let’s fix this, right? Or maybe evolutionarily, I’m thinking like an evolutionary perspective, it’s not adaptive at face value to be like, “I’m going to sit with the present moment.” You’re like, no, I need to do something, like pain activates me to try to solve something, the problem, the problem of pain, right? But then it ends up completely backfiring, because you then become disconnected from your body. 

And, sorry, I’m going on my own little tangent. But do you, you know, what would you say to somebody who’s like, I don’t want to just be, like you were saying, that yoga taught you how to just be. Like, that uncomfortableness of how —?

Sonia:  46:12

And that’s, this is a great question, because I feel like it’s a very present one for me, like, in the present moment. Because I know being in downward dog is painful for my wrists in particular, like I can’t be like this on my wrist. And so, I’m learning myself modifications that work for me, that doesn’t, that where I’m not feeling that pressure on certain joints, where I do feel it, or they don’t feel as strong as they they did. You know, it still surprises me that I went through a 200-hour yoga teacher training not that long ago, that I didn’t, at the time, you know, felt anything, at least at that time, to where I’m at today. We’re being on hands and knees, like I have to be in soft knees, so it’s softer on my wrist, rather than flat on my hands. And then, there are just some positions where I’ve accepted I cannot do because of I because I feel pain, and so I just, I don’t do those positions. 

I choose not to do those positions, and that’s okay. Like, I’ve had to tell myself, “Sonia, that doesn’t say anything less about you in your practice or even as a teacher.” In fact, if anything, I think that is what we should be teaching, is that if, you know, if all poses are an invitation, no one should feel like they to go into a pose that is going to incite physical pain. It’s all an invitation, all of what one teaches. And it’s also okay to not do a pose, to skip it, or to modify or do a pose that does feel good to you, even if the whole class is not doing that pose. I don’t care if someone’s gonna look at me, this pose right now is what’s speaking to me, and this is the pose that makes me feel good in my body, without worrying about how others may judge me or she’s not following with the rest of the class. The fact that I’m just showing up is a big step.

Cheryl:  48:43

That is beautiful. And I — oh, can you hear an echo with me? [Pause] That’s such a beautiful sentiment. And I think one of the things you said to me before we, when we were preparing for this podcast recording, you said one of the things you are most passionate about sharing is about how your chronic illness and healing journey has been a liberating one, which I’m very fascinated by that concept. Can you tell me, what do you mean by that? How has it been liberating?

Sonia:  49:19

So, there is a doctor who I got introduced to. I’m trying to remember how I learned about Dr. Gabor Maté. I think it was through his book, and then I saw him somewhere else speaking, and then I learned about his film, ‘The Wisdom of Trauma’. There is a quote that he said that like was an ‘Aha!’ moment for me was that, and I’ll read it, “Trauma is not what happens to you, it’s what happens inside of you as a result of what happened to you.” I felt like that gave me a very, it shifted my perspective of trauma. And I’m talking like any trauma that one experiences, right. Medical, I think this applies to all trauma, and I think he’s speaking to like all trauma with regards to whether it’s medical trauma, or other forms of trauma that folks may encounter in their lifetime.

And as someone who comes from a family with various traumas, and as someone who, later in life as an adult, has experienced medical trauma that it has helped me gain perspective. As far as I think that so much of — it’s taking me this month like and therapy, to like, be like, to this point of like, oh, to like, connect it for myself — is that trauma doesn’t define who we are as an actual person and individual. It doesn’t define us, right? But it’s what happened, it’s what happens inside of us, right, as a result of that trauma, especially if you experience trauma as a child like I did, especially in fundamental, during fundamental periods of one child’s lifetime. 

And I think that’s something that another book has taught me, ‘The Body Keeps the Score’, where it talks about that in particular, where trauma can have an imprint on someone, which can impact one’s autoimmunity, depending on one’s trauma, right, and fight or flight. Were you a child who were able to process one’s fears, one’s sadness, right? Did you understand an outlet for that? And so, it’s like, because I know I live in fight or flight, and that can be triggering to my nervous system, it is triggering to my nervous system. So, in order to, I know that for myself, I need to have and know, like, what are my resources to help me be able to care for my nervous system, right? What are the tools and resources to care for my nervous system, which then will care for my autoimmune system and not trigger other things inside of me, which can happen for me. 

I think that a big part of my second flare, my second thyroid storm that happened, was due to I did have a lower back issue that was happening that was causing me discomfort at night where I couldn’t sleep, so I wasn’t getting enough sleep. So, then it was causing stress during the day because I didn’t have the appropriate amount of sleep. So, it was a combination of not being able to sleep, then it triggers another piece, which is stress, and it’s like the perfect storm. It’s like creating the perfect storm in my system, in my nervous system and auto immune system. And it’s all interconnected, right? They’re all talking to each other. 

And so, I feel like, really, then, getting down to understanding that on a deeper soul level is also another journey that I’ve gone through that being in therapy and talk therapy and engaging myself in other realms, other communities of healing as well, that I’ve also allowed myself to be open to in order to heal any wounds that have gone unhealed. Of just not either not knowing or not knowing even how to heal that, right? 

I think his work, Dr. Maté’s work, is really powerful. That film, you know, the ‘Wisdom of Trauma’ is so powerful. There was another documentary that I also watched called ‘Heal’, which also was another one that was very, very powerful to show various kind of modalities of healing and how we all can take part of our own healing to a certain extent. Obviously, those of us who have a particular, we can only control so much of our disease and disorders. And then, there’s other pieces where we can play a role in that too. And it’s not always easy. I’m not, it’s not always easy. It’s messy. It’s a messy process, too, right? I don’t know if you’ve ever seen that picture where they’re like, ‘Healing is not linear’, and it’s just like a linear line, ‘Healing looks like this’, right, and it’s the squiggle. It’s like —

Cheryl:  55:11

I love that.

Sonia:  55:12

It’s just like, it’s messy. And I have felt that messiness. It can be just so messy. And I think that’s the liberatory part of it is also in like embracing my imperfections. Like, this, I’m an imperfect person, and I’m chronically fabulous. That’s kind of, you know, it’s like changing my perspective of things and also finding ways to have humor. I created a board on Pinterest of like, trying to find humor in chronic illness has also been something that’s been liberating, too, and because it’s just at some point, it’s like, I need to cultivate areas of joy and happiness and where I can, where are those little moments for me? Because it can get really dark, but there are, like, I don’t sometimes — I don’t want to, it’s hard to just stay there, because there, there have been moments where I have stayed there.

And sometimes I also allow myself, okay, I’m feeling this, let’s feel it. And like I’ve worked in rituals like scream rituals. I’ve gone into the forest and just screamed. And that was hard. Cheryl. When someone first suggested that to me, I’m like, I don’t know if I can do that. That’s going to be really hard. And then, a friend of mine said, “Why don’t you journal? Start journaling first, and then see what comes of that.” So, then I was like, journaling just words like, how I was feeling, how this moment I was feeling, and then I just started, and it was around the, like, can someone hear me? Is someone going to hear me? If someone’s on a hike, are they going to think I’m okay? Like, I just had all these things.

Cheryl:  57:13

Yeah, yeah, yeah. 

Sonia:  57:15

And I’m like, Sonia, you’re deep in the forest. Who is going to hear you? You’re by yourself. You’re in the forest. Just let it go, like, just. And then, you know, at first it started very quiet, and then it just like, it got louder, and it got louder, and then it got louder, and then tears started coming, and then it got louder, and more tears. And then, you know, I had to do it a few more times, where I took myself up to the forest and just like, and it felt so like, like, it felt like a huge weight off my shoulder of just releasing that. Because I feel like, culturally, in my culture, and even in my family, you aren’t talking. There’s no outlet for like, anger, or for disappointment or even for sadness. Even to just emote sadness, there was this threat of, there was a threat behind that. Like, if I cried, then they’d be like, “Why? What are you crying for?” It’s because I’m feeling this way. Well, it was as if sadness had to be connected to harm or like being hurt. 

Cheryl:  58:29

It’s justified.

Sonia:  58:32

There you go, exactly. Whereas, so, it was like, I didn’t know, you don’t know what to do with that. Like, if you’re not taught to process your feelings as a child. Then what do you do? Then how do we project that in our adult selves? So, having to connect with my inner child doing like that work, even though it it was painful, till today, it still is painful to process. A lot of times we don’t want to be with our feelings.

Cheryl:  59:05

Yeah, and that’s, it leads directly, I think, into the power of community, like you said earlier. You know, in Rheum to THRIVE, I honestly think sometimes, you know, I had all these lofty goals when creating the program, and what has ended up being so impactful for people is even more simple than I had originally imagined, right? But it’s literally sitting in a virtual room with people who are going through something similar and giving yourself and others permission to feel what you’re feeling about it. Like, it’s so simple, right? But so, I think it’s almost a universal experience that everyone that’s coming to the groups on some level, feels like they’re doing it wrong, or that they’re missing something obvious, or they’ve had some, almost everyone has had some experience of that real, negative self-judgment, and it’s so, when we get in a group with others, it’s almost universal that we’re so much more patient and forgiving to others than we are to ourselves. So, even just helping someone else in the group sometimes is even more healing than someone helping you. Does that resonate at all? 

Sonia:  1:00:24

For sure. Yeah, hands down. I think also, Cheryl, I don’t know if I have said this directly to you yet, well, now I will. And I think for me, what the group has provided is courage. The courage to be able to be vulnerable like and to just be my full authentic self and vulnerable, as well as practicing some boundaries, like saying, “I’m not — I’m just needing you all to just listen without any kind of,” I mean, I’ve never felt any kind of judgment in in the space whatsoever. But like, not looking for, like, “Oh, have you tried this, or have you tried that?” Like, that, you know. 

But if, if someone’s feeling like they need to just, like, say, a boundary, like for me, that’s learning to acknowledge and say boundaries to folks. This is like the starting ground for me, because if I can do it here, then I can do it with my family, and I can do it with my friends, which has helped me being in other healing circles and spaces like Rheum to THRIVE, where I’ve been able to practice that to then practice in other aspects of my life, like with my family, with friends. Like, I’m not looking for any kind of feedback or any kind of suggestions, I just need to just, someone to just listen. And that, I feel, is what the space has provided. And also, like everyone’s having their own experience, right? And so, we’re all being witnessed and having our own experience without judgment. And I think that’s very powerful, and it’s very healing.

Cheryl:  1:02:35

Yeah, it’s so, it really is. And I’m not actually a particularly spiritual person, but it does feel sacred to me, like, that’s the only word that keeps going through my head. It’s such an especially, I think, you know, I spend so much my time online or in technology, which has been amazing. I mean, everyone listens to this podcast or watching the video, it’s all because of technology that our, this is all able to happen. But sometimes it’s like, everything I feel, I’m rushing through my life. Sometimes, you know, and then when we stop and we have an alive experience, like in the support group, like this is what we’re doing. I’m not multitasking right now. I’m allowing myself to focus fully in the moment on witnessing and listening to other people’s experiences. 

And when they ask for it, it is, you know, in the Rheum to THRIVE groups, it is okay to say I’m actually looking for answers or solutions, like, “Hey, I’m having some methotrexate fatigue the day after. Does anyone have any specific pointers,” of course, but it’s also like you said, okay to say, “Hey, I just want to vent and/or I just want to share, and I’m not looking for responses.”

 I think that that’s, like you said, it’s very hard to just go from asserting a boundary in your head to asserting it to the person that’s like the most difficult person to do it with, like a family member or a workplace environment. So, just first practice it in a safe environment, right? It makes perfect sense. I actually, honestly didn’t think of it exactly in those terms until you said that. So, I really appreciate that you said that. 

Sonia:  1:04:18

Well, it’s also my first time being in, also, in a support group, well, especially pertaining to, like, those of us who have a medical condition, right, kind of support group environment. So, I also didn’t go into the group, let alone even what in the class I expected I was going to learn more information about RA. But as far as like, the supportive group dynamic and aspect of it, I just kind of went in with no expectations, because I really didn’t know. I didn’t know what to expect, rather than just – I knew I would hear stories of other people’s lived experiences, and I was just very open to listening. 

And I wasn’t quite — I knew at some point I’d feel courage to share. But it was more like, you know, you get comfortable with everyone in this space, and after hearing other people’s stories and sharing their vulnerabilities, gives you courage and empowers you to be like, okay, I’m just gonna, I’m just gonna, just gonna be courageous, and then just share and just not worry about how I say it, or how I say it, and just say it.

Cheryl:  1:05:37

Yeah, yeah. It’s so interesting, the number of people who’ve said that, yeah, that their goal in the beginning was to — and that’s 100% valid — but to initially, like, sit back and, you know, digest what is being said and not share, and then by the end, the comfort level increases so much, like you said, that it makes it a lot easier. I do, I always, I’m appreciative of the people who, yeah, I’m appreciative of everyone in the group, whether you share and whether you don’t. There’s people who they like to listen and maybe respond in the chat, or just simply be there to listen. And that’s a hundred percent okay, too.

And the only other thing I wanted to say, because you, because you mentioned humor, and I made sure to put a pin in that in my head, that’s also been one of the most surprising, pleasantly surprising things about the Rheum to THRIVE groups. And it depends on the group, different — it’s always a little bit of a, it’s a co-created experience, right, by the individuals, the energy, the personality, the preferences. 

But some groups more than others, but humor always plays a role in, at least has always played a role in at least one person’s journey. Or we always end up laughing more than I think most people would think you would laugh in a support group, right, a chronic illness support group. So, I think humor, for me, is a really important tool in my in my coping toolbox. And I even put that in the, like, the self-paced course part of the program under coping tools, humor is one of them for many people, you know. It’s very, you know, it’s part of embracing joy and choosing to see some light in the darkness as well. So, I’m glad you mentioned that. 

Sonia:  1:07:27

Yeah, I think I had mentioned once in group, I think I had posed a question, “Has anyone else found themselves clumsier since their diagnosis?” And everyone laughed and was just like, definitely, for sure. I’m like, okay, I’m so glad I’m not alone, because that’s one thing. I’m just like, constant. And I just, now, I just laugh about it, because it’s just, like, it’s just, yeah, it’s just, I’m constantly making messes, dropping things, unable to open something, and then it just, when I get it open, it goes everywhere. And yeah, it’s just, I don’t know. I just have noticed I’m just a lot more clumsier.

Cheryl:  1:08:07

Yeah, and it’s fun to share our fails. We have to share your wins, fails, vents, questions, you know. So, and, but yeah, I think there’s, I have a little working theory about that, that you have these little sensor, sensory nerves in your around your joints and connective tissue, like around your muscle tendons and such called proprioceptors. And your proprioceptors give information to your brain about where your body parts are in space. So, if you close your eyes and touch your nose, like, how did you notice that? You know, it’s about looking, it’s because you have this map in your brain of where your body parts are in space, and because these are located, like, they’re a lot of them are in the joints. It’s like your brain has these little, you know, these little dots that you’ve ever seen people animate – animation, that’s how they do, right? So, you when you’ve had damage to the joints, it’s only kind of logical to think that maybe the damage to the joints of inflammation is interrupting that proprioception process, so your brain may be getting less information about where your body parts are in space and making it more difficult to move around. You know, that’s my theory. That’s proprioception.

Sonia:  1:09:20

That’s a really good theory, though. And it makes, it makes completely, it makes sense,

Cheryl:  1:09:27

Yeah, but, and so every time I drop something, I’m thinking, you know, oh, it’s my proprioception. It’s not quite what I used to be. But yeah. And it’s, yeah, being able to laugh. It just, it makes you feel human again, too. 

You know, when you’ve been in like a dark place, but I am very aware, again, because I get so much feedback on social media when I post things to some people, they they don’t find it, they don’t find it helpful to at least look at other people’s humorous takes on living with rheumatoid arthritis, and that’s okay, too. Like, one of my little mantras was like, I can’t be all things to everyone. Like, you know, some people are going to be turned off by the, like, “It’s not funny. Why are you trying to make it look like it’s a cute little funny disease?” And I’m like, oh, it definitely is not.

 And you know, one of my ways of responding to criticism is defensiveness. So, one of those, I’m aware. I’m self-aware that, like, I tend to get defensive. So, being a social media influencer of sorts, you know, I identify myself as, like, a patient educator using the power of social media, right? My goal is to educate and support people, and I can do it through the power of social media. My goal isn’t just to, like, be an influencer. Like, look at me. I’m so pretty, like my nails, or whatever, you know, but it’s been a lesson for me, or a practice – it’s been a practicing, an area where I can practice not getting or not defaulting to defensiveness, you know?

Sonia:  1:10:56

Sure, yeah, I mean, and I think that for me, like you said, Cheryl, humor has been a source of coping for me. And it’s not even about making fun of myself, it’s about just having some light-heartedness around what I’m experiencing, because what I don’t want to hold is just feeling negative, even though I allow myself to feel that if I’m in that space, but it’s not a feeling that I just want to hold on to every day, because then I’m just I’m not allowing any space for joy or or even to cultivate some glimmer of happiness. Because, I mean, you know, I see that with that, yeah, you could just stay in that dark place. And at least for me, I’m speaking for myself.

Cheryl:  1:12:00

Yeah, yeah, absolutely it, yeah, it’s very — I’ve gotten a lot of positive feedback from others, I know there’s a lot of people, about using humor. So, I’m not, I think you’re definitely not alone. 

Sonia:  1:12:18

Yeah, my mantra, since you shared yours. I always say, “My body is my temple,” and I also give gratitude every morning, when I wake up. I give gratitude every morning to my body, sometimes certain parts of my body like my heart, because my heart has gone through so much, especially as it relates to my thyroid, because I have a heart condition now, because of my first storm initially.

 But, you know, I’ve now stormed twice, and the doctors are like, you know, every time you storm, your heart takes a hit. So, I just, like, I put my hands on my heart, and I always give my heart gratitude. First thing in the morning, give gratitude in general, to my body. And sometimes just I just like, acknowledge like, parts of my body that have had experienced pain and just, like, thank you for being here with me. Thank you for us waking up. Thank you for another day.

Cheryl:  1:13:26

I love that. Well, you’re anticipating, and my next set of questions are what I call the rapid-fire questions, kind of coming to the end. But you know the in addition to, do you have a favorite, you know, you mentioned your favorite mantras. Do you have a — or what are some of your words of wisdom to somebody listening who might be newly diagnosed with rheumatoid arthritis or a similar condition? 

Sonia:  1:13:54

Have grace and ease with yourself. I wish that was something told to me, because I didn’t have much grace with myself. And it took some practice for me to just have grace when I would think certain thoughts that were like negative, what I would call negative self-talk, like to myself, like you wouldn’t talk to a child, like, if it were my, my young self next to me, I wouldn’t be saying to that younger Sonia all the things that I was saying to myself and in my adult self. So, you know, having that grace and having some self-forgiveness for myself, even when those thoughts do enter, because we’re human, it’s going to happen. And so, I think that — and it’s sometimes, I continue to remind myself. And I have others around me who I ask, too, also, when I need that reminder, I do have friends who are just like, Sonia, have grace and ease with yourself. And then I’m like, ah, yes. How would I speak to my young self.

Cheryl:  1:15:23

Yeah, I love that. I also work on that a lot. Give us a favorite arthritis gadget or tool on your toolbox, physical or metaphorical.

Sonia:  1:15:35

I just learned a new one, and this is not going to be new to you, Cheryl, but I just learned just recently myself, I didn’t know anything about ring splints, like. 

Cheryl:  1:15:47

Oh, yes.

Sonia:  1:15:49

They’re now making, like, fashionable looking ring splits, like it looks like an accessory. So, I just recently ordered a couple, and I’m waiting for them to come and to try them out, because I have noticed recently one of my, on my right hand, my dominant hand, my finger, this finger here, it’s slightly starting to bend. It’s a very slight bend. It was actually my naturopath doctor who noticed it when she was looking when she had me put my hands down, and she goes, did your doctor mention that in your last checkup? And I’m like, actually, he didn’t. And I go, I had been noticing it too, but I was like, ah, am I being too hypervigilant or, you know, I’m like, am I —? Yeah. 

And then, she goes, no, it’s slightly, it is slightly starting, you know, bending in one way. But she goes, I can tell you something you can get to help that. And then, she told me about ring splints. And I’m like, huh? And then, she goes, yeah. And they’re making them, like, they look more like accessories, like a ring, but it’s there with a purpose. And then, she showed me, and I was like, I need to get me one. So, I got one. 

Cheryl:  1:17:04

So great.

Sonia:  1:17:06

Yeah, yeah.

Cheryl:  1:17:07

And they’re, and you can have, if you know, if you want a really customized experience, you can, especially if your insurance covers it, I think it’s a good idea to go to a certified hand therapist, because they can assess your hands, measure you. Yeah, this is kind of just for anyone listening. A certified hand therapist is usually an occupational therapist, but sometimes it’s a physical therapist that’s done additional training and expertise and passed the board exam all about the hand. They’re just like wizards with understanding, there’s so many muscles that go into the hand. There’s muscles, they’re called intrinsic muscles, that originate and end in the hand. And then, there’s the extrinsic ones that start up by the elbow and go into the hand. The hand is just incredibly complex. You know, there’s nine carpal bones in your wrist, and then there’s all the little, tiny bones that go into your fingers. 

So, they are a godsend for many people. I mean, I’m occupational therapist, but I’m not a certified hand therapist because I didn’t do all that additional training, and they can measure and see because there’s different kinds of, you know, clinical deformities that you could have with RA or just generally, there’s like Boutonniere’s deformity, or like swan neck, or there’s hypermobility. Ring splits are usually used for like hypermobility to keep your joints from getting out of place, but they can definitely also kind of nudge your joints away from an ulnar drift type deformities. 

Sonia:  1:18:27

I will definitely talk to my doctor in my next follow up about that. 

Cheryl:  1:18:32

Ask your doctor if a certified hand therapist is right – it’s like all those drug commercials, ‘Ask your doctor if you have moderate severe rheumatoid arthritis!’ Like, one day, was like, “Do you have moderate to severe —?” I’m like, actually, technically, yes. Like, that was my diagnosis. But I asked my doctor once, I was like, is my — because I know I was diagnosed with, like, moderate to severe rheumatoid when I was first diagnosed. I was like, but since I’ve been controlled and, you know, medications, like, it’s still kind of back to your diagnosis, you know? I guess I they’re talking to me. They don’t disappear. They never do the mild to moderate. You don’t get any — it’s always moderate.

 So, you’re out of luck. Okay, sorry. Do you have any favorite —? Oh, were you going to say another gadget? Sorry, I just got off on rings.  

Sonia:  1:19:26

Yeah, no. I think my other favorite things that I use are, like, my pillows, so, like, I have a knee pillow for sleeping, and some other supportive pillows that I use if I’m sitting, if I’m going to be stationary. And then, also the compression gloves and sleeves I’ve found that have been very useful. And then, the variety of kitchen gadgets, and I’m always looking for new ones.

Cheryl:  1:19:54

Oh yeah. Yeah, that’s beautiful. Yeah. And yeah, the way you mentioned, circling back to you mentioned cooking earlier, and that’s really, really hard if you’re having a lot of hand pain.

Sonia:  1:20:03

Yeah.

Cheryl:  1:20:06

Awesome. Um, do you have a favorite book or movie or show you have watched recently?

Sonia:  1:20:12

I would say my favorite book that I love and I’ve read it more than once is ‘Between Two Kingdoms: A Memoir of a Life Interrupted’ by Suleika Jaouad. 

Cheryl:  1:20:36

Yeah, I’ve heard of that one. 

Sonia:  1:20:39

Yeah. I’ve read that book, I think, now three times. I love that book. I go in, well, the third time I go to particular chapters to reread, and she talks about her journey with cancer. But it’s just a beautiful, I really like memoirs. There’s a theme here. Documentaries.

Cheryl:  1:21:09

Yeah, yeah, no, I am the same, I love just real life. It’s fascinating enough, you know. And then, we already talked about the mantras. And the last question for this part is, this is a hard one, so you kind of answered it in various ways. But what does it mean to you to live a good life and thrive with rheumatic disease? 

Sonia:  1:21:39

Focusing on the present moment in time, and taking one day at a time, I think, has been the biggest thing for me. Because I can’t control the future, at least not all of it. And I don’t know what the future, what lies in the future. I wish I had that superpower, but I don’t want to look — the past is the past for a reason. I think we can learn from the past, right? There’s wisdom of past experience. But I think also that’s the wisdom of yoga, is to be in the present moment as well. 

Yeah, and so, I try to be in the present moment, because that’s what I can and sometimes that’s all I can manage, too, Cheryl, is what is present with me right now? What is it that I need in this moment, right to get me to that next step? And to me, sometimes that’s either all I have the capacity for, right, is just that. Because sometimes just cooking a meal can be, like, take all my energy out and I’m like, I’m done, throw in the towel. 

But yeah, I think that, for me, it’s just being in the present moment. And yeah, and along with that is, you know, it helps me also, in that present moment, cultivate happiness. And I’m, you know, there are small things that can do that for me, like seeing a cute Corgi walking, or seeing a child having an interaction with their parent. That’s so sweet. I had once just walking along the Embarcadero one day, a child, I don’t know he was about, maybe, like under 10 years old, he came up to me and wanted to dance battle. Just randomly, he put his like radio to the side, and I was like, frozen. It was like a dream come true, but I wasn’t ready for it in that moment, because this caught me off guard, and I just, I wasn’t, I wasn’t ready for it. But it was just such a sweet, like, that, right there, that child didn’t even know what kind of impact they had on me in that moment, that till this day I still share that moment, and it just made me smile deeply on the inside. And his mother was there, and she just, like, shrugged her shoulders, like, “You’re the lucky one he chose.” I’m like, you won. I was just like, you won this battle. I couldn’t even, like, comprehend. 

So, it’s like, that’s when, when I say, where I cultivate my happiness, too. It’s like, also being out and about, if I’m on a walk, or if in the park, just like, just with the sun, because that, as we all know our joints love that natural sunlight. And I’m just watching just other people interact that that also gives me so much joy, especially if it’s a human connection two people are having, or just dogs just living their best life, whether they’re getting messy and just don’t care.

Cheryl:  1:24:57

Yeah, yeah. Yeah.

Sonia:  1:24:58

Those are the things that make me happy, like, if for whatever reason, like, I can’t pull it for myself, well, then I’ll go out in the world, and then I get it gifted, just from other people, how they’re cultivating their happiness and joy.

Cheryl:  1:25:18

I love that. I mean, my therapist literally said, like, take, or recommended, I take inspiration from dogs. Like, in terms of dogs live in the present moment. They’re just, this is the moment I’m in. I am here and, I mean, maybe they think about the future if I look at their, where their treats are, not very far future that they’re living in, they’re definitely present. So, I love, I love that. Is there anything else you wanted to share with the listeners before we wrap up? I feel as we could talk all day, but I also want to be respectful of your time.

Sonia:  1:25:53

Yeah, no, I think it’s, I think that’s a good point to leave on. I just, I hope that for those of you who are whether newly diagnosed or wherever you’re at on with your journey to RA, that you can just be in the present and just take one day at a time with what you’re holding, what you’re navigating through. You know, I feel like that’s wisdom. I had wished I had someone would have told me much sooner. Because it’s — because now I know not to, like, Google every single thing, because then I just, like, go into a rabbit hole, and then just can, like, think of the like, oh, my gosh, is this kind of the worst, is this what’s going to happen? Or, you know, I try not to do that. And so, just to just stay present, I think, is what has helped me and my nervous system is to be in the now. 

Cheryl:  1:26:57

It’s huge. It sounds so simple, and yet it is so difficult to do. So, I think that’s a really wonderful, wonderful point to end on. And I just want to reiterate what said earlier. I really appreciate you taking the time and sharing your story, you know, for the first time, in a forum that’s going to be more of a public, you know, public forum. And I’m very honored that you chose The Arthritis Life podcast to do that, you know. Yeah, I love, I just love all those points that we touched on, and I appreciate you. And if people want to follow you on Instagram, I have put your Instagram handle in the show notes. But @SD — @SMD, sorry, @SMDMontoya, right? 

Sonia:  1:27:43

Yes.

Cheryl:  1:27:44

So, hopefully people will connect with you there. Thank you so much.

Sonia:  1:27:48

Thank you. Cheryl, thank you everyone.

Cheryl:  1:27:50

We’ll talk to you later. Bye-bye for now!

Sonia:  1:27:55

Bye!

Add comment

Your email address will not be published. Required fields are marked *