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Ask Cheryl Anything: Celebrating 50 Episodes of the Arthritis Life Podcast

November 24, 2021
82 min read
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To celebrate fifty episodes of the Arthritis Life Podcast, founder and host Cheryl Crow answers listeners’ burning questions.

In this episode I share why I became an occupational therapist (spoiler alert – it wasn’t about arthritis initially!), answer your “just for fun questions” (including my favorite Taylor Swift songs), answer your arthritis related questions and share insights about coping with the roller coaster of emotions that accompanies chronic illness life. 

I’m beyond honored and touched to have reached fifty episodes and almost 30,000 downloads of the Arthritis Life podcast! 

Speaker Bio:

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

Episode Sponsor

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

Episode links:

Join the waitlist for Rheum to THRIVE,  6-month education and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. The next group starts in Spring 2022!

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

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.

Full Episode Transcript:

(00:00:02):

Okay. I am so excited to be recording this episode today because today we are celebrating 50 episodes of the arthritis life podcast. When I say we, I mean myself and my puppy, Teddy, who’s sitting here on the bed next to me, and we also have almost 30,000 downloads. As of today. I’m recording this on November 23rd, 2021. So I’m just, I’m so honored to be honest, really honor, that you have all chosen to spend precious moments of your lives, you know, listening to my tidbits of wisdom, as well as all of the amazing guests I’ve had on the podcast over the last year and a half? I, if for those of you who are maybe more new, I launched this podcast in June of 2020, but it includes a couple of interviews that I actually did way back in 2019, which now seems like a lifetime ago when I envisioned arthritis life as more of like a YouTube talk show, rather than like an audio podcast or short form video.

(00:01:06):

So it’s grown a lot since then. And by the way, I did want to show off for those of you who are watching the video version of this, I did finally have t-shirts made, or sorry, just one t-shirt at this point for me that says Arthritis Life on it with my logo, which is it’s really fun and really exciting. So I’m a, my husband likes to joke, oh, you’re really an influencer now, you have a t-shirts, but I don’t – I haven’t figured out if I’m going to sell them yet. And let me know, I guess, if you want a t-shirt that says arthritis life on it, I also have an idea, a couple of different ideas of, of fun t-shirts and other swag. Ubut anyway, the point of today is to celebrate again, this wonderful achievement of, or milestone of 50 episodes and almost 30,000 downloads!

(00:01:52):

And, you know, I’ll just say to begin with today’s episode is going to be an ask me anything or a listener letter style podcast. And for those of you who haven’t heard of those before, it’s basically when people write in their questions to the host of the podcast, and I had people submit their questions over Twitter, Instagram, Tik, TOK Facebook. And I think that those were the main platforms oh, email as well. So I got some great questions and, you know, I wanted to say before I get started that, you know, I was actually hesitant in 2020 to start a podcast. And mainly it’s because I feel like my energy comes across better over video than audio only. And it’s even deeper than that. I actually had a hard time with articulation when I was a child. I pronounced my name, “Che-WuW,” I couldn’t say R or L very well.

(00:02:47):

And I had to go to a few years of speech therapy in elementary school. And honest, to be honest, I didn’t, I didn’t actually get that embarrassed by it. It’s a little hard to embarrass me, but I would get frustrated when people couldn’t understand me. And I also like to talk fast. I kind of am a fast talker, fast thinker. And so sometimes it felt kind of like my brain was moving faster than my mouth could move and and that would frustrate me. So I think it kind of had this idea that, oh, I don’t have a very easy to listen to voice. Maybe I shouldn’t have a podcast, but I’m so, so glad I didn’t listen to that gut instinct that said, don’t do a podcast because now I’ve gotten a lot of great feedback from people and met some amazing people through this podcast.

(00:03:28):

So thank you to all the listeners out there. Also, before I get to the listener letters, I wanted to really take a minute to thank everyone. Who’s taken the time to appear on the podcast. Our providers who’ve come in for interviews, health providers that maybe don’t have lived experience with arthritis, but also all of the patients who have, you know, again, lived experience, sorry, that’s the dog lived experience with inflammatory forms of arthritis, most commonly rheumatoid arthritis, but also we’ve had some with psoriatic arthritis and ankylosing spondylitis. And I, I know that, you know, I don’t just take credit for people. Having positive feedback about this podcast. It’s really the stories that people have. The guests have shown as well, that have really touched so many in the audience. So thank you. I just feel really today. It’s just a happy celebratory day.

(00:04:23):

And so, you know, I’m, I’ve categorized the questions that came in and the categories are going to be like personal. I’m going to start off with just the personal or just for fun questions. Then we have the specific, like arthritis management questions. Like, how do you do this? Or how do you do that? Then we’re going to have a section related to occupational therapy. Cause I surprisingly, I got quite a few questions about that. And then at the end and we’re going to have a couple about life hacks, a few questions about mental health and emotions. And then we’re going to conclude with just some miscellaneous questions and miscellaneous updates. So that’s, that’s what we’re going to do today. So starting out with a, just for fun questions GTL on Instagram asks what have been some of the most memorable moments from recording so far, how did you first decide to make a podcast?

(00:05:12):

And what’s the difference between how you felt when you first recorded versus now? So I’ll answer those in order. So, you know, well, my most, my first memory that comes up is my very first episode. So it ended up again that in 2019, I was starting this as an in-person interview style show that I was envisioning to be just on YouTube. And so I went to Sarah Dillingham’s house. She is somebody I met through volunteering with the arthritis foundation. She lives near me. And so she also has rheumatoid arthritis and she’s also an entrepreneur. And at that time she had this wonderful idea for comfortable and visually appealing hand splints and wrist braces (*company name is Grace & Able*), which I was really excited to talk to her about. Because unfortunately you would think that this would be a priority for health people who make health devices, but often the function is what’s considered primarily and people don’t seem to prioritize aesthetics and the psychological experience of wearing, you know something like a compression glove.

(00:06:19):

I’m wearing some gray ones right now, or, you know, using a mobility aid. A lot of us, especially younger people with arthritis want something that’s fun. And maybe that has different colors, you know, pink or purple or blue or green options, not just black or gray. I mean, I am wearing the gray ones. I happen to be wearing those today, but I’m, so Sarah is also from the United Kingdom and it was just what was so great. I’ll give you a little bit of a back back story, or I guess a little piece of trivia about the podcast. She was so patient, because at that time I had bought this really nice in person, audio recording device and micro set of microphones that could interview like up to four people at a time on different microphone feeds, which was, which is great because that way, for example, if one person coughs or something, it’s really easy to edit that down, but I will just be, I’ll totally be honest.

(00:07:12):

Like I messed up and I did not adequately take the time before that first podcast to really make sure that I understood how to use the technology. I kind of had blind faith in the technology, but that’s not, I don’t recommend that. So I thought I had set it up correctly and I didn’t take the times I was too impatient. And it ended up that the recording sounded like we were standing 50 feet away from the microphone. Then you would just, you couldn’t hear anything. So I interviewed her for like over an hour telling, you know, having her tell her whole life story and, you know, give you all this wisdom. And then I had to come back a few weeks later and say, oh my gosh, I’m so sorry. Like I actually said, if you don’t want to do it again, that’s totally fine.

(00:07:53):

But I don’t know if I can use this. Like I could either just publish a couple of moments with, you know, as videos with captions, but I was like, it’s really hard to understand us. And she was so patient and she she had me come back to her house and do the whole thing again, but it was good. It was a good practice for both of us in telling our stories, but it was also a very good reminder to me to always double check and double check, have backup plans when it comes to technology. And you know, I mean, there’s been so many moments. I looked through all the old episodes and I was, I almost, I don’t want to pick favorites in terms of like, this was my favorite person to interview. It was really, truly everyone brought something unique who I’ve interviewed.

(00:08:34):

And I honestly think that one of my favorite things that’s occurred just throughout the recordings has been having moments of recognition with people who I’ve only known through social media. So I know some in some podcasts, like my friend, Sarah Putt, she, when she’s going to interview someone, she has, you do like a 15 minute meet and greet just to get comfortable with a person and test out the audio equipment and everything. Before you do your full interview, I actually don’t do that. So I just, the majority of people who have interviewed on, on the podcast, now that it’s all on zoom because it’s all virtual because of the pandemic. I, we had, it’s been our first time ever talking to each other in real time. Most of the people I’ve, I’ve been conversing with on social media, but haven’t actually talked to in real time before.

(00:09:21):

So it’s gone really well. Like maybe that’s not the recommended way to do things, but there’s been these just kind of very organic moments of recognition or think, I might think I’m interviewing this person today. We’re bringing them on to share their story about pregnancy and childbirth, but we end up connecting on so many other things as well. So, you know, again, to tying that little piece together with a bow, it’s just that, you know, you, we all share so many experiences while living with chronic illness that it’s been for me just personally fulfilling to, to conduct the interviews. Cause I’ve had these moments of connection with others and I’ve learned a lot too. It’s kind of like, the teachers always say hi, I learned more than I talked to you. And then, you know, to tell asked, why did I start a podcast?

(00:10:09):

So as I said earlier, it was definitely not first on my list. Video is where I feel really comfortable. It’s, it’s unusual, most people are the opposite. They’re, they’re nervous or scared about public speaking and being on video, they’d rather be on a podcast because it’s less I guess it’s less in your face and it feels less like people aren’t looking at you where I, I don’t mind the people looking at me and I thought I kind of had this idea that I don’t have a great speaking voice. It’s just, I think, cause I don’t have a great singing voice. I just kind of like many people, you know, you hear your voice on the answering machine and you’re like, is that what my voice actually sounds like? You know, so I was a little reluctant, but I ultimately decided to do it because on the one hand I noticed that in my own life, I did gravitate towards listening to podcasts, you know, ever since first hearing of this American life back in the late two thousands when I first heard of that podcast.

(00:11:03):

And then I, you know, it just became something that I could just easily listen to it any time I can listen to them in the car, I can listen in while doing dishes, you know, versus a video is typically more of like a commitment cause you want to be watching. So you can’t, it’s not as easy to multitask. So, you know, I also started listening to other podcasts on the maximum fun network, which is an independent podcast network where they ha they host judge John Hodgman. And we got this and I actually had been listening to some podcasts on that network and they kept talking about this thing called max fun con like kind of like, Comic-Con like a conference for people who are fans of this podcast network. And I kept thinking, what is this like, what’s MaxFunCon, I looked into it and it turns out that it’s kind of like a, they call it like, and it doesn’t happen anymore, sadly because of the pandemic and other things.

(00:11:52):

But it’s like a summer camp for adults. And and also it’s like a blend of a social event and entertainment event and a learning event. So I went to this weekend conference and I got to watch some live tapings of podcasts. I got to learn from Jennifer Marmer the producer of the Judge John Hodgman podcast. And I, and I got to learn from some other people too. And then also just become entertained and have fun with other people who have similar interests. And so I that’s, when I kind of got this, the seeds were planted even further. Like I could actually do this, like I could make my own podcast. So I also said, you know, yeah, I might not think that I have the best speaking voice in the world, but it’s worth it to get the stories out there because I was starting to see by this point, this was in 2019, but I started to publish some videos on the arthritis life, YouTube channel and Instagram and Facebook, and just seeing how powerful it was for other people to see someone that they could, you know, connect to and learn from that.

(00:12:53):

That was more of like a personal touch than maybe with reading like a website from, you know, a detached, more like a detached voice, like from a medical professional, not to say, you know, we all need as many resources as we can get, but I think that there is something powerful about saying, seeing like, oh, this person, you know, like is, you know, they’ve been having this for, you know, over a decade and they’ve kind of figured out how to manage it and live with it. It makes it feel less overwhelming. So I thought, okay, well, yeah, as long as I’m taking the time to do these interviews might as well get them out to as many people, you know, as we can. So I keep saying we it’s like literally me. So, you know, I also talked to my friends, Sarah at OT4Lyfe, a great podcast for occupational people, interested in occupational therapy.

(00:13:40):

She interviewed me for her podcast. And after that, that was in like March of 20, 20 interesting time. And I got some behind the scenes pointers from her, just getting things started. And then I published, started publishing it in, in June. And I also got some great advice from Melissa LaPointe, who’s like a occupational therapist and visionary and business coach and all, she wears a lot of hats and she has this philosophy of like, you know, don’t wait until you’re a hundred percent ready to begin. Like the learning occurs through the doing, you know, so I was like, I don’t feel like in June, 2020, I wasn’t like I am an expert podcast or I know exactly what I’m doing, you know, and I still don’t feel that way, but I felt, I felt like I have to get started. I want to start this, see where it goes and it’s been great.

(00:14:25):

So Gttel also asked, the third part of her question was the difference between the beginning in June, 2020. And now my experience of hosting the podcast, I would say I have improved in my ability to articulate my words, which is good because something that’s really important to me for accessibility purposes is having transcripts of every episode. I’m still slowly working through and getting the transcripts for all the old ones. But for all current ones like starting, I think episode 40, we have recordings or transcripts and we have transcripts for all of like the 10, most popular, most downloaded ones. So transcripts are, can be really tricky when like audio transcripts. So putting everything that I’m saying into words, and my guests are saying into words to put on the website the arthritis website, it’s a little hard if you don’t enunciate your words, because then the automatic transcription software is like, what are they talking about?

(00:15:22):

So so I am a, I have improved my articulation. My speech therapist in elementary school would be proud and I’ve also slightly gotten better. I’m definitely not as the sentence is evidence of not being all the way better, but I’ve gotten slightly better at being able to like, make one clear point, like one sentence and stop that sentence and then start the next sentence, which you think would be pretty easy. But for me, I have a mind that kind of is constantly making connections between things. And so like, I’ll start a sentence. There’s this funny quote from Michael Scott like this, and I’m actually doing it right now as I’m talking, but you know, it’s like, I sometimes I just start a sentence and I just don’t know where it’s going to go. And it’s like a journey to figure out where I’m going.

(00:16:06):

But I usually, there, there is a thread of connection between my different points, but I’ll, this will, you know, talking about hand splints will remind me of thinking about the stigma against disability, where, and that will make me think about ableism and interval internalized ableism. And that’ll make me think of the discussion we had last week in my room to thrive support group. But you know, my brain is just makes a lot of connections. So it sometimes I know that that’s not the easiest thing to listen to cause you’re like trying to like understand one main point at a time, not like 16 tangentially related points. So gotten a little bit better at that still can improve. And I can also better like envision an arc of an episode as we record. Then I have, I also think I’ve improved a bit on being able to think in my head, like what questions would the audience want to hear?

(00:16:57):

Because I’ve gotten to know you through, you know connecting on social media and email for those who don’t like social media. I understand. So you know what people who email me@infoatmyarthritislife.net, I’ve been able to hear your feedback. And so I can kind of anticipate, I think, let me know if I’m not doing that well, what you might want to hear. So that’s the first question. Oh my gosh, it’s going to take a long time. I have so many thoughts. On Instagram, not cherry blossom asked me my favorite Taylor swift song. So she knows from my Instagram stories, I’m a huge Taylor swift fan. I can not choose one overall song, but I have it divided up. I did a little bit of preparation for this episode. I divided it up into my favorite for each category. So my favorite sad song is a tie between tolerate it and right where you left me, those are both from evermore and then honorable mention would be all too well, the 10 minute version from red Taylor’s version, I could have a whole episode on that amazing epiphany from full floor and then better man from red Taylor’s version.

(00:18:00):

Love those. My favorite love song of Taylor Swift’s is Wildest Dreams, it’s so ephemeral and beautiful. And I honorable mention “Hey Stephen” from Fearless, Our Song from debut, Ivy, from Evermore and Dress from Reputation. So my favorite empowering song like Taylor Swift, just really good at these kinds of anthems and make you feel like I can do anything, um just energetic, like kind of good workout songs I would say is I really love, “I Did Something Bad,” that’s from Reputation, it’s just a banger. It’s such a good song. And an honorable mention would be like Getaway Car and Blank Space, love those songs too. My favorite happy song of Taylor Swift’s is Enchanted from Speak Now, her third album, which was all self written at the age of like 20, which is just, she’s a savant. She’s incredible. And then,uour honorable mentioned for happy songs, would be Paper Rings from Lover and Gorgeous from,uReputation.

(00:18:58):

I know Gorgeous, I guess, is a little controversial because so many people are like, it’s not that great of a song because she’s such a good writer. And all she says is like, you’re so gorgeous. I CA you’re so gorgeous. Can’t like she can’t look at his face cause look at your face and the light. That’s just, I don’t know, but I love it. I think it’s a cute song and it just makes me happy. I, I have it playing in the shower a lot. And then my favorite wistful Taylor swift song is August from Folklore, her album last year, which is so good from 2020 a honorable mention for wistful songs would be Peace, Marjorie, Cornelia Street and Eyes Open. It’s really it’s, “Eyes Open” really wistful it’s. That song was beautiful and she wrote it for the Hunger Games soundtrack, and then favorite bridges,

(00:19:45):

So Taylor Swift is the queen of bridges, which if you don’t know, it’s like, I can’t explain music theory because I don’t know it, but but a lot of times a bridge occurs about like two thirds to three quarters of the way through a song where it’s kinda like that we’ve had verse chorus, verse chorus, and then all of a sudden they’ll kind of break into something else. I’m trying to think of like a really popular one. But the song that I, the, my favorite had hers is from Death by a Thousand Cuts, which was on her album Lover. And it’s like, the whole chorus is like “saying goodbye as death by a thousand cuts.” And it was just dah, dah, dah, dah. And then she has this just unbelievable bridge. I can’t sing. It’s going to be like, it’s just, just listen to it.

(00:20:26):

And then honorable mentions for those are actually all three of these, my favorite bridges of hers are all from Lover Daylight and The Archer. And then that the songs I listened to the most currently are Evermore from, from the movie, from the movie, from the album Evermore and then Exile from Folklore. My most controversial fave, from what I’ve figured out from online communities is I love the song End Game from reputation. Apparently a lot of people don’t like it. She kind of like semi raps in it. I think it’s good. And it has Ed Sheeran in it too. And there’s just a great, like, I don’t feel like I have to justify, I guess my preferences, you know, I love pop music. It makes me happy. Life is short, you know? My favorite of her music videos is definitely Look What you Made Me Do.

(00:21:11):

It’s not my favorite song of hers, but the music video is incredible and Delicate is my second favorite because it’s just beautiful. And then my favorite concert performances is just the last part of Taylor Swift, ha I Knew you were Trouble at her 1989 concerts. So I Knew you were Trouble was written for the album Red, but she did a, a rock version of it at the 1989 concert, which I saw in Seattle. And it blew me away. Like I literally just got so many chills and like tears in my eyes. Like it was like it started off really slow. You can look it up online, but it was just very powerful. I can’t really explain it. And then Delicate the reputation concert where she’s like floating above the audience. It’s just really beautiful. And she does like a little speech. So those, those, I love talkin’ about Taylor swept.

(00:22:00):

I could talk about her forever. And I know she’s not like sh- like, like in like many people she’s not completely unproblematic. Like there’s some things I wish she had that was, she had denounced white supremacy earlier. You know, I wish she had done a lot of things, but just as an artist, I love her. I love her art. So Don from Instagram coffee or tea, now this is going to be more straight forward. I love both, but I do drink coffee every day. And I used to be one of these annoying people that was like, I don’t drink coffee. I get my energy naturally. Like people would ask me, you know, how do you have so much energy? How much coffee do you drink? And I’d always say, I don’t drink any coffee. I have amazing. But in graduate school in 2010, I started drinking coffee because I was like, I need, I need a little mental boost here.

(00:22:45):

I can’t, I can’t do this as, too early. So and I haven’t really looked back since, since I like to make French press coffee in the morning. And then Cindy asks a really interesting question via email. She said, my question for you is how are you loaded question, right? As when, as in, when you aren’t working or assisting others, how are you? So I liked that question because I, I actually don’t really stop very enough probably to actually ask myself that. But you know, I am doing well. I know that for 2022, I really want to kind of figure out a better way to balance my, you know, work time in my play time. Because right now that it’s a double edged sword, the fact that I love what I do, I’m gonna talk a little bit more about this later, but, you know, I, I have created my job out of what I think is the amalgamation of what this concept from “Ikagi” in Japan, where it’s, what do you, what do you like to do?

(00:23:53):

What is the, what are you good at? What does the world need and what can you get paid for? And like this, I literally spent a ton of time thinking about this before starting arthritis life. And that’s why I started it. It’s the exact con confluence of all of those four things. I it’s really what I feel that I enjoy, like making the videos, doing the podcast and facilitating the room to thrive support group and the, and creating, you know, courses like the Rheumatoid Arthritis Roadmap is also is what the world needs. And because this isn’t, there’s not enough education and support for people with these conditions like rheumatoid arthritis. And then I feel, I feel competent at it. So that’s a good thing to feel good at what you’re doing, and then I can get paid for it. So that’s the win-win win, but also because I enjoy it so much, I can sometimes overdo it or burn myself out or not like prioritize time for other things, like time with family.

(00:24:56):

And, and so I want to do a little better job of that, just having boundaries. You know, a lot of it honestly is it’s so cliche at this point in 2021, but you know, I’m on social media all the time. I’m on my phone a lot. And so I think that there are a lot of just really simple habits I could be changing that would that would be something like, you know, Hey, stop looking at your phone after like 5:00 PM and maybe just check it one more time before bed, like don’t constantly be checking it, you know, simple things like that. So I guess maybe if you can hold me accountable to that, if, if you feel so inspired on social media being like, sure, I’ll get off social media. Okay. So that’s the first like personal question section. The next one is all about arthritis management, like just kind of specific questions about dealing with symptoms and all that.

(00:25:45):

So the first question is from J R D pics on Instagram, what helps reduce tendon swelling without having a steroid injection to the fingers, any ideas? So this is a very specific question. I honestly have to say, like, I would recommend getting an evaluation or considering an evaluation by a certified hand therapist, which is either a physical therapist or occupational therapist licensed in your state who has extensive training and certification in the hand. And they can do a specific evaluation for you, what might be causing your tendon issues, because I can’t say without kind of knowing your history and everything like that. So that’s that one I do try to me part of my integrity that that’s something that’s important for me in my integrity is knowing like where I always feel like I want to answer everyone’s questions, but it’s also really important for me to know, like, what is the limit of my, of my knowledge and when do, when to say, okay, I think you need to ask someone else about this.

(00:26:49):

So that’s what I would say about that. Meg asks, how on Instagram, how do you deal with overwhelming fatigue? So first I will say in general, like the medical community right now, to my knowledge, the rheumatology community, we have much better tools for preventing fatigue than we do for reducing fatigue once you have it. So so for prevention things like, I know it’s annoying to keep hearing this, but prioritizing sleep fatigue is distinct from sleepiness and getting adequate sleep does not necessarily mean your fatigue will go away by any means, but if you have lack of sleep, it’s a huge trigger for exacerbating fatigue. So, you know, making your sleep environment as comfortable as you can, you know, turning off electronics one hour before bed again, do, as I say, not as I do and avoiding your fatigue triggers. This one has been a huge for me and my unique fatigue triggers personally are heat independently and sunlight independently, but those two together are even worse.

(00:27:52):

Stress can trigger fatigue for me and over physical overexertion or mental overexertion. So especially like after a conference or something where I’ve been learning a ton, I can get mentally fatigued or after like doing too much exercise without enough rest, I can also get fatigued. So figuring out another way to prevent fatigue would be on the, on the converse side of the extra overexercise would be under-exercised. So actually the more, the less active you are if you remain, if your fatigue is from your inflammatory arthritis now then actually getting a just right amount of exercise can prevent fatigue. And there’s lots of studies that show that even like random control trials, randomized control trials. Now, if you have the, the, the caveat is if you have M E, myalgic encephalomyelitis that are also chronic known as chronic fatigue syndrome, then exercise is not necessarily going to help.

(00:28:49):

But if your main issue is just simply inflammatory form of arthritis then, then there’s a lot of evidence that, that a mild amount of exercise. I will help. And I would say, you know, try to mix a little bit of cardio with a little bit of strength training. So if you’re really, really tired, it can fatigue. It can be hard to get the gumption on the energy up to like, take a walk, get some cardio going. So maybe start with strengthening. It could be even just doing a wall sit, you know, for, for 30 seconds or doing some calf raises. I’m actually about to record some new videos on basic exercise. So I’ll, we’ll link those once those are done. And then to the best of your ability, I know this is not realistic for everyone, but if you have any freedom or flexibility in your work schedule or your home life schedule allow for rest and nap or, and, or naps, if naps help you, you know, really like I, I’m very I’m very, very privileged right now that I have a lot of control over my schedule.

(00:29:52):

So I really think ahead and try not to schedule too many things in a day. Now, I fail at that a lot of times, cause I get too ambitious, but you know, trying to schedule in a little bit more of a break than you think you might need. And I do try to not schedule anything that’s particularly physically or mentally taxing for the part of my day when I, my circadian rhythm makes me feel the most low energy, which for me is between like two and 4:00 PM. So it’s kind of like my siesta time, I don’t know, was succeeded in that again, sometimes you have to make a medical appointment or something, but I do the best I can to schedule in rest breaks. And that’s known as energy conservation. It’s just a or activity pacing. So I, and it’s hard again, my default is like, I talk fast, I think fast, I want to do a lot of things.

(00:30:40):

I want to do everything fast and I’ve really had to learn to slow down. And then if you already have fatigue, so you’re trying to minimize your existing fatigue again, that energy conservation can be helpful. And also sometimes we simply have to go towards what’s called compensatory strategies or work arounds saying, you know, if this, if I can’t make this fatigue any better than it is, how can I work around it? Can I delegate? You know, can I say, Hey, get a babysitter, even though I’m at home with my kid, because it’s just too hard for me right now to take care of my own kid, you know, it, do you need to also, I would say if your fatigue is really debilitating, talk to your doctor about or ask your doctor about ruling out any other underlying causes, sleep apnea is much more prevalent in the population of people with rheumatoid arthritis than the typical population.

(00:31:30):

Even with out any other risk factors. Even if you’re not overweight, you don’t smoke or you don’t snore. You’re still more likely to have sleep apnea if you have rheumatoid arthritis. So you might actually find, oh, I thought my fatigue was all from rheumatoid arthritis. That’s actually from sleep apnea. Then you get that taken care of. You might feel a lot more energy. So make sure you kind of rule out. There’s also anemia as a classic, you know, condition that can cause a lot of fatigue. And if you get iron supplements or whatever treatments you need for the, for the anemia, you might also feel better. So that was, would be kind of the three things I would do. Okay. So Effie rising above RA asks, or she says, keep up the good work. I want more products. So I think what she is referring to is I often share little product demonstrations and product reviews and my recommendations on YouTube and Instagram and other social media.

(00:32:25):

So I will be sharing those, you know, periodically as well as I am going to also send out a holiday chronic illness, business owned business, highlight reel on my, on my blog. So I did this last year too in 2020 for holiday shopping. Cause I always like to highlight other people who have chronic illnesses who are having their own businesses, so you can support other small businesses. But also I have my favorite arthritis products, Amazon affiliate page on my website too. So I’ll link to those in the comments, but yeah, it’s really fun to try out and test out from different disability products or arthritis products, because especially as an occupational therapist, we’re taught to do this really rigorous activity analysis. And we’re taught to look at every single aspect of every object, you know like I have a self, I was looking for my camera holder.

(00:33:18):

Oh yeah. This is like, you know, we’ll look at how much force is required to pinch here. How much force is required to move the tripod? What’s the texture, how easy you’ll have we look at everything we’re very detail oriented, so that’s really fun. So the next question is from Charlotte on Instagram, she asks where to start. I’m 48 and I’ve just been diagnosed with severe osteoarthritis. So first of all, know that you’re not alone. And I think the first starting point for me or what I would say is going to be in your best interest is to form a solid and deep medical team around you. You have more people than only a rheumatologist that can help you and a rheumatologist is amazing. But as many of us know, rheumatologists tend to book out far in advance. There’s a shortage of rheumatologists in the United States.

(00:34:12):

So I’m just saying for literally practical purposes, it’s helpful to have a really solid relationship with a physiatrist, which is like a physical medicine doctor. There. You can have a relationship with an orthopedist that can help you with orthotics. You can have a relationship with a occupational therapist, physical therapist, certified hand therapist, social worker, counselor, or psychologist, or psychiatrist to help with coping skills. You know, having a solid team around you on registered dietician is one, a pharmacist are so many health providers that can help you. So don’t try to do it all on your own. The other thing I would say is, you know cause forming solid medical team team around you is going to be somewhat dependent on the accessibility of a medical team to you. Whether, you know, if you live in a really rural area, you don’t have really good health insurance or the financial ability to have as a deep of a team as you might want.

(00:35:18):

Also, you know, I think it is really in your best interest to gather a set of valid resources. I tend to recommend ones that end with websites end in.edu or respected non-profits. Now anyone can form a website, the ends in dot O-R-G. So sometimes people will say, oh, you can always trust a website ending and.edu or.org. That’s not necessarily the case for.org, but the larger organizations like the Arthritis Foundation, Creaky Joints, or nonprofits that have a really good reputation for having valid information websites like Healthline, where they’re, all of their articles are medically reviewed. You know, make, I think that you need to really, it’s going to be in your best interest to have a, a bit of a skeptical eye about some of the claims you might see online. Unfortunately, there’s a mixture of people with bad intentions who just want to make money off of like running scams.

(00:36:20):

That’s like the extreme end. And then there’s also some people who ha are, are in my opinion, you know have the best intentions in the world, but are simply misinformed. And using some logical fallacies to make claims that they just don’t understand are logical fallacies. For example, I did this diet and it helped my rheumatoid arthritis. Therefore, you can do it too. If I could do it, you can do it. That’s actually not true, right? We know this watching the Olympics. You can’t say, well, Michael Phelps could do it, I could do it if I just try hard enough. That’s not true. You know, one person being able to control the rheumatoid arthritis with diet is proof that, that, that, that one person in that one person’s body, that that’s possible for them. It’s not proof that anyone can do it. It’s really easy to fall into those logical fallacies, especially when you’re stressed and overwhelmed and you really want there to be some black and white answers.

(00:37:22):

And so I, like I’ve said many times, hopefully in the last 50 episodes, I still go in circles. You know, I’ve had this for 19 years. I feel like I have a conflict in my mind between on the one hand, I pride myself on being really open-minded and I would never want to say, well, there’s no evidence for that, so therefore it’s not true because just like I was told before I was diagnosed, well, we don’t have evidence that you have anything wrong with – “You’re just anxious.” Well, lack of evidence, isn’t evidence of a lack, right? There’s evidence, let’s say that, you know, evidence, let’s say there’s actual evidence, a random control trial of I’m saying this, hypothetically of people drinking celery juice, half of them, the people with rheumatoid arthritis drink celery juice, half of them don’t, everyone does the same. That’s actual evidence that celery juice didn’t have a big effect, but there’s also areas like new and emerging areas, you know, like vagus nerve stimulation where maybe there’s not evidence that it works, but there’s also not evidence that doesn’t work.

(00:38:21):

So I guess I wish I could just tell you, you should only do things that are a thousand percent, you know, evidence-based that are replicated over and over and over again. But I get kind of, I get confused myself because I I never would want to minimize or deny myself the opportunity to try something that might actually work in my body. So long story short, you have to learn how to evaluate all the claims you’re seeing online and learn the weight of different kinds of information like obviously, you know, replicated scientific trials, like that are really, really important. That’s why I, for example, I’m benefiting greatly from the Western medicines that were developed for rheumatoid arthritis. So this completely changed the trajectory of the prognosis for people, but I have noticed in the last two decades so I am a big proponent of Western medicine for many people, because as a whole, if you take the population of people with rheumatoid arthritis, the overall population of people as a whole has done very well on these things that doesn’t mean you as one individual are guaranteed to do well on it or that you shouldn’t try any other things like diet and exercise.

(00:39:37):

Does that make sense? So I feel if I get down to this every day, and I think that that something to think about is what’s the evidence currently for this potential thing I’m evaluating that might help me and also think about what is the cost? What’s the cost, not just financially, what’s the cost to me mentally. Time-Wise what’s the cost energy-wise, you know, it’s one thing to say, okay, well, yeah, if I take, let’s say fish oil, there is some evidence of fish oil helps people with arthritis. It’s also just not that expensive and pretty easy for me to do. Why not? Right. But if you’re saying, oh, you need to come in for acupuncture, six times a week, pay out of pocket a hundred bucks each time, then that’s all of a sudden, even if that might not hurt me, it might not be worth time, energy, commitment, money.

(00:40:27):

So yeah. That, that’s where it gets a little bit complicated. So I have to, sorry, Charlotte, if I’ve confused you! Where to start is: get a list of valid or get a team of valid health providers around you and learn how to kind of sift through health claims online with a little bit of a skeptical yet. Open-Minded I, which again, it’s taken me 19 years and I’m still finding my balance for that. Another question from Mac Gregor, tolerating finger splints, do I like prefabricated versus custom? It’s difficult to tolerate. So first of all, I’m so sorry that you’re having difficulty. I mean, the general rule of thumb is generally speaking that custom splints are usually easier to tolerate than prefabricated ones simply because they’re literally customized to your body, to your anatomy. Now that doesn’t mean that it’s, it’s a guarantee because your customized splint might have been made too, too tight.

(00:41:29):

And so what I would do is, you know, if you don’t already have one, find a good hand therapist in your area and, you know, really explained to them exactly what is uncomfortable about it, see if they can modify your existing splint or make a new one. So someone Kira on Instagram asks, what footwear do I recommend? So I will, again, my medical disclaimer, which I put on everything is that this is all everything I do is general general patient education. This is not specific medical advice for anyone person. So footwear is actually a great example of something that’s really, really specific to the person, you know, one person’s anatomy and their gait pattern of their way that they walk, the way they put weight on their feet is going to be totally different than someone else’s. So I really recommend seeing either a podiatrist or physical therapist who can measure your feet, analyze your gait pattern or your walking pattern, how do you, are you putting more weight on the ball of your foot or your heel?

(00:42:29):

And they can recommend shoes from there. I’ve done that. I’ve gone to a podiatrist that helped a lot and made customized customized insoles. And for me personally, I mean, I’m always happy to share what ends up working for me in my body. But again, with the caveat that what works for me won’t necessarily work for you. I, my two favorite brands for particularly the kind of pain that I have from rheumatoid arthritis, which is pain on the ball of my foot. And our dance goes and Hocus. So the HOKAs are more like a athletic shoe. I’m wearing them right now. And the dance goes, they have a huge variety they’re known for clogs, but they also have other styles too. So I have Dansko books and Dansko flats, and they’re, they really help take the pressure off the ball of my foot.

(00:43:18):

So another person on Instagram asks “how likely is remission, I’ve been on disease modifying anti-rheumatic drugs and biologics for six months with no relief. Does remission mean I could possibly have some freedom from pain?” So first of all, it’s, it’s so difficult and disappointing to go through that kind of roller coaster of being undiagnosed. And then you finally get diagnosed and you get a sense of relief. Like you’re going to start medications and you’ll probably feel better. They might, the doctors usually will say, you’ll probably feel better. And then you actually miss- don’t necessarily feel better if the medicine isn’t a good fit for you. So I’m really sorry that you’re having that experience. And the first thing I would say is yes, remission would mean that you will have a relief from pain. Umost doctors define remission as lack of manifestations of your disease, either on both blood work and physical exam and your subjective report of symptoms or one or the other, it’s a little bit, a little bit confusing.

(00:44:20):

There’s not like one universal definition that I’m aware of, but I will say, you know, we’re asking a little bit about the prognosis for you. How likely is remission for you? That is something your doctor would be best positioned to answer because the likelihood of any one individual reaching remission for rheumatoid arthritis depends on a lot of factors, your personal medical history, your family, medical history, any co-morbidities, you might have your blood results, blood markers of inflammation, how severe your disease was when you got diagnosed imaging results, how long your disease progressed before diagnosis and treatment, how fast your RA has progressed just in the time that they’ve known you. Those are just some of the factors. So it’s very complex, but the, but again, so for you personally, your doctor would be the best one because they know all that information about you.

(00:45:13):

But I will say that there’s a great quote from, that brings me a lot of comfort from the rheumatology journal volume 51, December, 2012 from Upchurch. And je it says, I’m reading this now. So quote, “Current therapy for rheumatoid arthritis is such the progression from symptom onset to significant disability is now no longer inevitable.” So when they say, okay, and that part of the quote, I’m going to say, when they say current therapy, they mean drug therapies, the pharmaceuticals, things like methotrexate and biologics, okay. Continue quotes. So “significant disability is now no longer inevitable and are a patients can anticipate comfortable and productive lives on medical therapy. “So Again, that end quote that’s for the population as a whole, that’s like this gigantic shift in the field of rheumatology related to rheumatoid arthritis. This positive shift from this is a progressive disease that we don’t have very good treatments for to:

(00:46:17):

Oh my gosh, you can actually slow this down. You know, I’m wearing my compression gloves right now for comfort, but I have, you know, after 19 years I have a lot less significant deformities in my hands and limitations than you would have expected if I was diagnosed in, let’s say in the 1980s versus being diagnosed in 2003. So, you know, most patients are the, the, the hope is to get your disease slowed down significantly, if not put, put into remission through, you know, the, the drug therapies. In addition to lifestyle factors, you know, many rheumatologists, I just attended the American College of Rheumatology Conference, which is the big, you know, 14,000 people conference that is all, mostly doctors have rheumatologists, but also allied health professionals, like nurses, pharmacists, social workers, occupational therapists, physical therapists. And one of the themes that I saw a lot throughout is that, you know, it’s not an either, or it’s not either Western meds or Eastern alternative therapies.

(00:47:20):

It’s all of it. You know, it’s looking at stress management, looking at diet, I’m looking at exercise, sleep, you know, lifestyle factors and looking at medications. It’s like, to me, it’s kind of like, I have this phrase that I don’t know where I heard it from, but, you know, throw the kitchen sink at it, like do everything that you can. Oh, speaking of that. Okay. So I got this question from Ms. Liz, “Do you follow an anti-inflammatory diet? If so, how do you stick with it? I’m struggling.” So I’ve said this many times on the podcast, I will say it again. I’ve, of all the lifestyle factors that can help people with rheumatoid arthritis and other rheumatic diseases, I personally find the diet and nutrition part to be the most complex and complicated. And for me it has been the most overwhelming part of that from my story is that I also have a lot of gastrointestinal issues that predated my diagnosis of rheumatoid arthritis.

(00:48:18):

When I was in my late teens, I was diagnosed with laryngopharyngeal acid reflux. So the kind of acid reflux that’s comes all the way up to your throat and can cause the sensation of a lump in your throat and irritation to your esophagus. And so I also was diagnosed with gastroparesis a few months before I was diagnosed with rheumatoid arthritis actually, no, almost a year before I was diagnosed with rheumatoid arthritis. So gastro-paresis is is a motility issue that relates to motility meaning movement. So it means literally translated, it means paralyzed stomach or paralyzed GI tract. So my, the peristalsis and the contractions that moved down my stomach are slower than most peoples. Fortunately for me, my gastro-paresis has been more intermittent than constant. It’s kind of flare it up in 2003, two thousand two and three, and then again in 2010 and then again in 2017 and it’s calmed down a lot now.

(00:49:18):

But so all that to say is all – that’s all not even related to rheumatoid arthritis, right? Well, well, the gut is related to rheumatoid arthritis, but I still don’t have a clear there, there, isn’t a clear understanding of specifically how my, how much dysautonomia disorders, which is the umbrella term for issues of the autonomic nervous system, which is what controls your peristalsis and your, your your, your contractions in your stomach, which is what I might have an issue with there’s that system. And then there’s, you know, the relationship between the gut and the immune system. And, and I’ll say symptom-wise my stomach issues don’t track consistently with my joint symptoms. So I have had periods of horrible stomach issues, no joint pain. I’ve had vice-versa horrible joint pain, no stomach issues. And I’ve had periods of months and months where I’ve had both.

(00:50:16):

So I really don’t know, but for me personally, and that’s why I actually recently I’ve worked with a naturopath in the past for some of my stomach issues, and and she helped me with some diet related things, but then she recommended seeing a registered dietician. And I often recommend people to see a registered dietician. I wish I had seen someone earlier cause it’s been a really positive experience so far. You know, in general, I, I do typically pride myself on trying to be able to make complicated things, make them as simple as possible. So yes, the approaching nutrition and diet for rheumatoid arthritis is very complex and overwhelming, but it, it typically there, I would say I boil it down to simplify it in my mind. I boil it down to two things: you can either eat more things that are good for your inflammation, that – those are things that are anti-inflammatory.

(00:51:14):

Those are the things that will directly work to cause less inflammation in your body. So that’s like do more of the things that make the inflammation go away or minimize it. And then that’s option one. Option two is do less of the, the bad foods or the foods that are unhelpful for inflammation. The foods that are pro-inflammatory like highly processed foods and certain, you know, fried foods or oil certain kinds of oils and meats. But it’s really, at the end of the day, the best individual nutrition plan for you is going to be one that is tailored to your own needs. That’s why I always say this example, but there’s some people that are vegan that do amazingly well. There’s people that are on the keto diet that eat tons of meat and they do really well. There’s lots of different, there’s lots of different ways people manage it and we all are like bio-individual.

(00:52:11):

So most of the evidence points towards an overall anti-inflammatory eating pattern, which does combine eating more anti-inflammatory foods and eating less pro-inflammatory foods. And also I think it really behooves you to make your to, to manage your stress as well as you can. And I think, why are you mentioning stress? We’re talking about diet and nutrition. Well, I mentioned that I find that diet and nutrition for rheumatoid arthritis is one of the most overwhelming or complicated lifestyle, lifestyle things for both me and most of the patients I’ve talked to. And then, so when things are overwhelming, it’s obviously stressful. So what I’ve seen happen, and I know Jennifer Tharani, the chronic pain nutritionist, she says this to sometimes see what people can, if you can actually develop an unhealthy obsession with healthy eating or clean eating, or only eating the perfect things.

(00:53:12):

So you really want to be careful about that. And you know, it, it’s important to know I got this data from Jeff Sparks. Who’s the rheumatologist who wrote the 2019 article rheumatoid arthritis in the clinic and the Annals of internal medicine, that five, he says in that article, he said, it’s “very rare” for people with rheumatoid arthritis to be able to control it without Western medication. And I asked him, can you give me a number, like, even a range? Are we talking when we’re saying rare, like two to 4%, are we saying 10 to 20%? You know, and he said 5% or less is the number that’s most commonly quoted. So 5% or less of people with a diagnosis of rheumatoid arthritis are able to achieve sustained long-term remission without drug therapies. So I think that’s important to remember when you have, when you set expectations for diet, you may be in the 5%, you are more likely to be in the 95%.

(00:54:12):

So if your goal is to make yourself able to completely control your disease with medic- or without medication with only diet, of course you are in charge of your life. You, you know, but I would imagine that will be a stressful situation if it ends up not working out. So,uwhat actually a lot of rheumatologists do is you start with the more aggressive drug therapies, because that’s what the Mo- the evidence is best for. But then you can go all in on the dietary and lifestyle things, and then wean down on the medication. To me, that’s like the best of both worlds. So,uagain, I’m not a doctor, that’s just, you know, a lot of, a lot of people are saying that’s a, that’s a great long-term solution. Uso Berti from Twitter says”I suffered with poly articular arthritis. That means more than one joint, really struggled to stay in one position for more than 20 to 30 minutes while sleeping my joints lock crack in snap throughout the night.

(00:55:11):

I love to know the key to good sleep from routines, diet, sleep aids pillows, the right mattress, anything.” So, first of all Berti, I would say you already mentioned all of the things I normally mentioned, routines, diet, sleep aids pillows, the right mattress. You know, I think that first of all, I would say that, like I said earlier, it’s always a good idea to get an evaluation, or if your doctor thinks it’s warranted by a sleep specialist to make sure that there isn’t anything else going on it does sound like you might be having, you know, pain insomnia, which is like the colloquial word for just difficulty sleeping, due to pain. You know, and I think sleep, sleep environments are similar to shoes where, you know, some people love a firm mattress, affirm pillow, the cold sleep environment others are like, and, and maybe a cold environment with a very minimal amount of blankets.

(00:56:14):

Other people are like, give me the softest mattress, a billion pillows, a weighted blanket, you know, make it really hot. So it is annoying as this answer is it really does depend on your own personal preferences and like doing a lot of trial and error. I will say, you know, you mentioned routines you know, a lot of people would do recommend is like keeping the bedroom only for sleeping or restful activities and avoiding exercise for a few hours before bed avoiding a lot of exposure to like in mentally stimulating things before bed, like including like social media or things that might make you get kind of emotionally riled up. Having a winding down routine might include things like, you know a mindfulness meditation app, or a lot of people in my room with five support group have told me they love a podcast called nothing much happens, bedtime stories for adults.

(00:57:08):

So that’s kind of a fun take for those who are like, have a difficulty with the meditation. It might be easier to just listen to a story you know, avoiding food triggers. Some foods can make you bloated to make it harder to sleep sleep aids. You mentioned, you know, I have a lot of people in my group that have mentioned that they use CBD gummies that help that help them sleep, help them relax. And then yet with pillows and mattresses and, you know, everything you can do, I have everything you can do with trial and error to figure out what the right setup is for you. I have a body pillow, and I actually like to put one, not just in front of me for my shoulder, but I put one behind me when I was some, a side sleeper. And then sometimes I can kind of twist partially and be still on my side, but not as much on my hip as I was before.

(00:57:57):

So I think the key for me is having multiple different options because I do move around a lot, but I wish, you know, sleep again is, is one of the most important aspects of overall, like, you know, managing our pain and fatigue. Everyone always talks about diet and exercise for lifestyle factors, but sleep can be just as important. So you know, specifically actually lack of sleep can cause pain. There’s an article from a few years ago, showing that lack of sleep can cause pain more so than pain can cause lack of sleep sometimes. So now also I’ll say one other thing. I’ve had a little bit of issues with insomnia ever since my son was born. And I actually had used a technique from acceptance and commitment therapy to rel – to help me go back to sleep, which is stop pressuring yourself to go back to sleep.

(00:58:47):

It sounds very un-intuitive, but it’s like the more that you pressure yourself to go back to sleep, the more frustrated you get and the more riled up you get. So there’s this app Headspace meditation specifically about getting back to sleep. And the first thing it says is like, it’s not about getting back to sleep. It’s okay. You’re just a relaxing, like to remind yourself also like I’m giving my body the rest it needs. Like even if I’m not sleeping, I’m giving my body rest. And that’s a good thing too. So if that helps, hopefully does pinky via email asked and I already responded, but I will share this with the group because it’s not a very common question, but there might be others who have it. “You Know, I was on methotrexate for three months and my joints got worse, the swelling spread.

(00:59:27):

And so my doctor took me off. Do you know if this has happened to anyone else?” And I said that, you know, I hadn’t heard of that happening, but I wouldn’t be surprised if it had happened before, but I don’t think it’s a core- I don’t think it’s a causation. I think it’s a correlation because RA by definition is progressive. So if your joints are already on the path of progressing and getting worse and you start a new medication, regardless of what the medication is, if that medication isn’t effective in your body, then your joints are just continuing to progress. And it might seem like, oh, that medication is what made me progress, but it actually could just be a correlation versus causation. So again, just talk, talk to your doctor if that happens. Of course. So that’s probably my best guess. Okay. So now we’re on to occupational therapy related and I’m going to need to speed it up or otherwise this is going to be like five hours long.

(01:00:18):

So RA Life hacks and PDX fashionista, both on Instagram asked “Why did I choose occupational therapy?” So surprisingly, because a lot of people will say, oh, did you choose to be an OT because of arthritis? And cause you knew it would help you and you can help others? No, because I did not know that OT and occupational therapy could do so much for people with arthritis until I went to occupational therapy school. So I actually always wanted to be a special education teacher. I volunteered at a private school for kids with severe developmental disabilities and behavior challenges in Mercer island where I grew up called CHILD School. And I was just really, really fascinated with like neuro-diversity and just different, different disabilities. And I, when I went to school in New York, I also worked with a young adult with some cognitive difficulties from some drug exposures.

(01:01:13):

And I also I just, I’ve always been drawn to that population of at the time it was called special needs. Now, now it’s usually call it like, neurological differences or developmental differences or just developmental disabilities or developmentally disabled. There’s lots of different preferences on language, like, you know, person first versus identity first like autistic versus children with autism. A lot of the autistic community does prefer identity first listening, autistic. So you know, I also I, I worked briefly in a school in upstate New York for children with disabilities. And there was, I was again thinking I was on the track to becoming a special education teacher. And I remember one of the children in the classroom, I was in, kept talking. He had some ticks like some vocal techs and he kept saying “OT, Sara OT, Sarah OT, Sarah.”

(01:02:07):

Like he really loved this woman, Sarah, who was his O T, I kept thinking, who like, what is this, like what who is OT, Sarah and I went and watched their session. I thought this is really interesting. Like it’s a way to, I appealed to me to work one-on-one with children because I was starting to doubt my ability to really command a classroom. I found that really challenging the idea of being in charge of the whole classroom, but I really liked the idea of working one-on-one. I felt if I was better at doing one-on-one than the full classroom. So then I also I came back to Seattle a long, a long long story. I ended up working for six years in the non-profit sector before going to OT school. But I had a friend at the time in the late two thousands that got unfortunately a swing dancing friend that got in a bad car accident or a bike,

(01:02:54):

He was riding a bike and he got hit by a car and he got a traumatic brain injury. When I watched him go through physical rehabilitation. And it reminded me that the occupational therapist that can work not only in like educational settings, but they can also work in hospitals and rehabilitation. I also had two grandmas that were getting older and they had also gotten some home health help from occupational therapy. And my grandma, my mom’s mom ended up actually, she is an occupational therapist. So she, she was, she never worked after having kids. Cause that was kind of the norm back then. But so I knew about the field in the back of my mind. And so I ended up doing some volunteer work back at the school where I used to volunteer full circle with Kathy a wonderful, wonderful occupational therapist.

(01:03:36):

And I also volunteered at a brain injury unit and I just thought, this is, this is good. I want to do this. Cause it’s like a combination of the macro and the micro. Like I’ve always been a big picture thinker and a big picture person, but I also really enjoy like getting drilling down into the real minutiae and the specifics of someone’s life and helping them with the real practical tools. And so it felt kind of like OT was the best of both worlds. Now I think it’s a little bit of a, it’s the best of both worlds and it’s a little bit of the worst of both worlds sometimes. We kind of have a bit of an identity crisis in our profession sometimes. But you know, again, I didn’t know that what OTs could do for people with arthritis. I was stunned when I learned all these different things I had never been exposed to as a patient.

(01:04:17):

I think part of that is that I went into almost immediate drug induced remission for the first seven years after my diagnosis. So there wasn’t really a huge need for me to be referred to OT, um like as from a rehab standpoint, but for prevention and patient education, I definitely could have benefited from it quite a bit to learn joint protection strategies and all the tools in the toolbox. You, I had to learn everything on my own. Like what should I do a hot pack or cold pack for pain? You know, all these things, you know, how do I twist the keys on my car when my thumb is hurting? So long story short, you know, I decided to work in pediatrics continuing after, after I graduated with my occupational therapy degree, worked in school-based practice and I consciously decided an outpatient clinic with children.

(01:05:05):

And I decided to say, I wanted to separate my arthritis life from my work life. I didn’t want to work directly with arthritis. So I was worried it would be too stressful. Like I, I have a hard time, I’m not like I just, I was worried that I would have a hard time kind of overly identifying with patients if I work like in a rheumatology clinic. So I would do, I was doing volunteer work with the Arthritis Foundation and enjoying, like using my OT skills to volunteer with patient education. And then I would work in the schools and outpatient clinic, but long, long story short, I ended up taking some time off when Charlie was starting kindergarten, I had some other health issues and I was like, let me, let me re think like what’s sustainable for me. Long-Term and again, that Japanese concept of Ikagi, what’s that nexus of: what does the world need?

(01:05:56):

What am I good at? What do I enjoy? What can I get paid for? I felt like with working with children, the one that was not the circle not fitting was do, does the world really need more of that? I’m saying in the area where I live in Seattle, there’s a lot of pediatric occupational therapists that specialize in helping children with developmental disabilities, developmental differences. And that’s, that is a wonderful thing. We should always have more, but there’s not like a shortage. So in terms of arthritis, it just kept hitting- in the back of my head, it was irritating me. I’m like, “someone needs to do something. Someone needs to give these people with, you know, why are the children who are getting diagnosed with, let’s say cerebral palsy, what are they being given hours and hours and hours occupational therapy, which they should, by the way, they’re being given a lot of hours of occupational therapy.

(01:06:48):

That’s good. But why are then the people who are just as impacted by having rheumatoid arthritis or ankylosing spondylitis – Why are they not being given it? Why are they not being given anything? Why are they having to resort to going to Facebook groups and learning? I mean, first of all, Facebook groups, they’re a blessing and a curse. I think we all know this. It’s absolutely wonderful to be able to connect to patients, but there’s, there’s a lack of curation of the information that goes on there. So, you know, why are they where they’re just – giving, being given one 20 minute appointment every three months? This is my soap box. So I was like, “someone needs to do something. Someone needs to do something.” And I honestly, this is going to sound like I’m making this up. But back in 2003 or four, my brother graduated from NYU law school and Cory Booker, who is the mayor at that time of Newark, New Jersey,

(01:07:38):

He gave the best speech I’ve ever seen in, in real life. And he said, he gave, he talked about, I hope I don’t butcher this too much. My memory of the speech is that he talked about he was trying to do this, he’s as much – this is much – (stutters) – I am not comparing myself to Cory Booker. First of all, he is incredible. But he was saying he was trying to make a positive change in Newark and he was talking to his apartment supervisor and he was like, I just, I don’t know. I just, I wish there was something more I could do. I, you know, I’ve, I’ve done X, I’ve done a Y and Z then, and then she goes, I know what you should do. And he goes, what? She goes, I don’t know what you should do. And he goes what? He goes, and then she goes, you should do SOMETHING.

(01:08:25):

I don’t know why that was – so anyway, the point was that he was like, it made him realize there’s always something more he could do. And he ended up doing actual like oh my God, what did he do? He had a tent and he set it up somewhere. And he did like I think he did something like a like a starvation. Like he, he was like, what is it called? When you say like a hunger protest, like, I’m not going to eat until this happens. And so obviously, like, I don’t remember all the details. So the point is in the back of my head, I had that voice that like, you should do SOMETHING. Like I knew that I couldn’t like, I can’t change. I wish I could, I cannot change the entire us medical system. Believe me. I’ve had many, many daydreams of doing that.

(01:09:08):

But ideally I think it would be great if occupation, if there’s like an occupational therapist that could give patient education and support and encouragement to every single, newly diagnosed patient with inflammatory arthritis and osteoarthritis, for that matter, you know that’s just, that’s not happening currently, everywhere. It is happening some places, it’s not happening most places. And I don’t know how to make that happen, but what I can do is use the platforms that are available, the freely available to me. You know, actually I guess I pay a little bit to Simplecast to host this podcast, but, you know, I can make videos on YouTube. I can make videos on social media and itI can connect to patients. I can make a, you know, a support group that costs a small fee to help people, you know, support their ability to function and adapt and adjust to life with rheumatoid arthritis.

(01:09:57):

So the pa- and then the pandemic happened. And that was even more reason to do it because it’s something that I can do virtually. So long story, Um that that’s, that’s why I ended up working in this area. And, you know, Erin asked us on a similar note, what are your favorite things about your job? Well, first of all, again, I want to acknowledge, like I said earlier, I have a lot of privilege to be able to do what I’m doing right now as my full-time gig. And it is, I want to just be clear that, that it’s, it’s mainly because of my husband’s job that I can afford to, to do what I’m doing with Arthritis Life. So, you know, I’m not making anything close to what I made as a part-time occupational therapist in the school district, which was on a teacher’s salary.

(01:10:42):

So so, you know, this is really a blend of like a passion project and a, a something I’m hoping Arthritis Life, to turn into like a truly sustainable business long term. It is technically a business. It’s a registered business in Washington state, but I’m not it’s not, it’s, it’s not a nonprofit, but it is not very profitable. But it is – I did,uI did, I did think very carefully and hard about whether to make,uArthritis Life a nonprofit versus a for-profit and you know, what tipped the scales for that is that, well, first of all, we already have some great nonprofits. I don’t, I didn’t want to kind of compete with any of those, like the Arthritis Foundation and Creaky Joints. They’re already doing a great job and there’s other specific,uautoimmune, you know, autoimmune related disease. Non-profits and there’s IFAA ssociation for autoimmune or auto inflammatory arthritis there.

(01:11:37):

So there are some already out there. And also, I have been on two different non-profit board of directors. I’ve been fortunate enough to be a board of director member for,umy state association for occupational therapy and for a state,uleadership and advocacy organization. And the thing about nonprofits is that you, as the director, as an employee or an executive director, or the program director, you don’t have the final say, and many times the board of directors does. And so I’m a little bit of a control freak. I’m not gonna, I’m not gonna lie. And I guess, I don’t know if I’m gonna apologize for that. I do believe in like oversight, but I want it to be able to have, I wanted it to be efficient and I wanted to have complete control and final say on what, what goes out there, what my videos are.

(01:12:24):

I didn’t want someone to say, well, you have to ask this person, and oh, I don’t know, we have to review that. I wanted to go and say, this is what I want to say today. I mentioned earlier, I’m a very impatient person, so I it’s just very straight forward. And also what tipped the scale is that I wanted to also be able to have this – Arthritis Life, have an arm that is a part of the business that’s an occupational therapy business as well. So I’m set up like partially right now, I’m almost done being set up to be able to see clients virtually as an occupational therapist. I’m not doing it yet because I am trying to reign myself in because I do tend to like tire myself out and over commit to things. So I really want to wait until it’s the right time to, to deploy that.

(01:13:06):

But you know, this is just a for-profit structure. It’s a PLLC in Washington state. It is just much more, it’s a cleaner and straightforward and easier to run as a solopreneur or solo entrepreneur than, then a nonprofit. So, and it’s, to me, it feels more efficient. So again, it’s not that one’s better, they’re just apples and oranges, and that’s how I started, um and that’s that’s, this is how I’ve started it. So who knows how Arthritis Life evolves into the future? I do want to, you know, my vision, my mission and my vision is, you know well, they’re two different things. So my mission is to educate, empower, and support people with inflammatory arthritis. And like, my vision is a world where everyone who gets diagnosed with inflammatory forms of arthritis and that’s psoriatic, ankylosing spondylitis, rheumatoid arthritis, that everyone feels adequately supported and empowered.

(01:13:57):

I don’t know if that’s too if it’s too redundant, my mission and vision are officially too redundant. I’m not sure, but, you know, that’s what I’m doing. That’s my goal. And that, and so so, you know, I’m, I’m very proud of what I’ve been able to build and, you know, I’ve had over a hundred people, either take the Rheumatoid Arthritis Roadmap course, the online self-paced course, or my Rheum to THRIVE support program, which confusingly used to be called the “Rheumatoid Arthritis Roadmap – Premium Support” version, I apologize to people who’ve been, we meet at the beginning from the beginning, cause it also used to be called before that it was called the “Beginner’s Guide to Life with Rheumatoid Arthritis,” So I’ve just, I have, I, maybe again, maybe I should have a board of directors over me saying like, “What are you doing?” But (laughs) but yeah, I, I, well, you could, you could say, oh, you’ve been too scattered,

(01:14:45):

Or you could also say in a more positive sense, I’ve adjusted and I’ve pivoted over time and made some changes. And so I’m very proud of what I’ve been able to do right now. And so that’s so, but I am also feel grateful that I have the privilege to be able to basically, you know, Erin, your question was, what’s your favorite thing about your job? I mean, it’s, I made this job specifically to be something that again was the perfect nexus of what I enjoy doing, what I’m good at, what the world needs and how, what could be financially sustainable. And so I, the favorite thing is that I just feel like I’m able to hit all those quadrants. It is a little bit of a watch what you wish for, you might get it because sometimes I am my own worst enemy and I commit, over commit.

(01:15:27):

So I’m, I’m working on, I kind of, I want to do everything and say yes to everyone. I very much have that kind of improv mentality. If you don’t know, like an improv comedy, they, you know, the, the, the theme, the recommendation is to always say yes, like, yes. And and so I’m learning that that’s not the best thing for me, long term from a business perspective or from an energy perspective. So I’m learning to be a little bit more choosy and a little bit more specific to my mission. So we’ll, I’ll keep you posted on that. The the last two categories are life hack related and mental health and emotion related. So van chola and Instagram says “I’m a first time mom, newly diagnosed, what are some RA hacks for new born items?” So I have written a few articles on this, on my own blog, as well as Mariah Leach’s wonderful website and resource Mama’s Facing Forward

(01:16:17):

So I am going to share links to those in the comments, or, yeah, in the show notes. I also am going to share the link to the rheumatic disease in pregnancy and postpartum webinar that I contributed to for the American college of Rheumatology, which was really wonderful. But what I would say first is to really do, obviously you have limited time and energy isn’t as a new mom, but, you know, look at your daily routines and try to slowly think about where is the pain or fatigue coming from in each of those, is it putting the snaps on the baby baby clothes, for example, in that case, okay, can you swap out the snap one Z for the zipper one Z? You know, if it’s getting the baby in and out of the crib, can you alter the kind of crib you have? Can you alter how tall it is?

(01:17:07):

So, you know, and again, an occupational therapist, that’s part of our job is to be able to help you walk you through your specific environment and context and all the life skills that you’re performing in your day and figure out where can we either compensate or adapt for your disability, and then where can we remediate? So if you’re having weakness, we can remediate that by strengthening. If you have a fixed deformity, that’s not going to change. We can compensate for that by using an alternate strategy. So it’s going to be really specific to your issues, but I definitely think, you know, zippers versus snaps is a good one using specific gadgets, like unbuckle me for the really difficult tasks, like getting the buckle and unbuckled for your infant car seat. There’s all sorts of things like that, that I’ll all I’ve put in those blogs.

(01:17:58):

And you can also listen to the episode that I have with Mariah on this podcast. So Lynn also asked her advice for putting baby down on crib when your knees wrists and hands are super stiff. So this is not, this is totally something that I have done, but I’m not saying that this is, I’m not officially recommending this. You have to be careful about recommending things, but but when you can do, because they used to have a better setup for cribs, but it’s not a safe for babies where you could push pinch and pull down one whole side of the crib. That’s not possible anymore, or at least no one sells those anymore. So if it depends how bad your knees are, cause if your wrists and hands are the issue, I sometimes would put Charlie down, actually on a mattress on the floor and obviously having a safe floor environment with no like choking hazards or anything.

(01:18:53):

And that was a lot easier for me cause my knees weren’t bothering me, but my wrists and hands were so that we wouldn’t have to lift him up and over. But if you need to put the baby in the, in the crib, you can also, can you lower the crib? Can you have the crib take down the legs of the cribs? So it’s lower to the ground. So you don’t have to lift up as much again for, for wrists and hands. And then you don’t, then you only have to bend a little bit more. You also could put some pillows in the bed temporarily in the mattress. Obviously, hopefully most of you have small kids. No you’re supposed to a safe sleep environment. Doesn’t have any extra pillows or blankets or stuffies or anything in it, but putting, putting some pillows in the crib to, to raise the height of it first and then slowly taking the pillows out to lower the baby that would allow you to not have as many lifting demands, particularly actually when getting the baby out.

(01:19:47):

So again, that’s something that someone could come to your house, like a home health occupational therapist, ideally, and, and coach you through that. Okay. I promise we’re getting towards the end. So tan salty on Instagram, ask advice for coping with the emotional roller coaster that comes with RA. It’s really exhausting. How do I remain? So it’s funny. I do end up having a positive attitude, but it doesn’t come from trying to have a positive attitude. And that’s really hard to explain this sometimes, but the best way I can put it is having a positive attitude to me is a side effect of looking at the big picture and thinking about, you know, what, first and also validating and acknowledging all of your thoughts and feelings about a situation. So I say, okay, from a mindfulness perspective, these are my thoughts. I’m going to, am I checking with myself?

(01:20:42):

These are my thoughts and feelings right now. I’m going to allow them exactly as they are not go try to change them, modify them, label them as good or bad. They just are. I’m just a human being, having human feelings, human emotions. And then, and this is very much from the acceptance and commitment therapy perspective. Thinking about what you can still do in this moment, what would still help you live like a rich and meaningful life, despite the crap that’s going on, despite your pain, despite your fatigue or alongside might be a word that you liked better alongside pain, alongside fatigue. What are the possibilities that are still there? I think this is where people get caught up, focused sometimes so much on, “I have to eliminate the pain and eliminate the fatigue before I can be happy before I can think about what’s still good in my life” and that’s just not going to happen sometimes.

(01:21:30):

And that might sound depressing, but it actually is ultimately for me, freeing to say like, you know what, I might not be able to do anything more right now for my pain, but I, but I’m still capable of something, right? I can call a friend. I can pet my dog. You know, I can do a video. I’m trying to think of examples that aren’t just things that I enjoy, but things that other people enjoy to, you know, cook a nice meal you know, and, and that, and the result of that when I focus on what I can still do, I do end up having a little bit more of what people would call like a positive mindset, because I’m orienting myself towards the possibilities, not towards what I can’t do, but at the same time, I still acknowledge my grief of what I can’t do.

(01:22:16):

And I validate my grief and my negative feelings. And the fact that I validate them, I’m just realizing this now, it means that I’m saying these aren’t wrong, these aren’t bad. And so I stop that, that little cycle of feeling bad about feeling bad. You know, when people try to think positive, say, oh, I should only think about positive things. I should only have a positive mindset. And then by definition, if you say that, that that’s what you’re supposed to have, then you’re failing every time you have a negative thought or negative emotion, when really, again, a full life as Russ Harris says, and the happiness trap trap book, a full life is going to have the full range of human experiences and human emotions. You’re not, no one has like just a perfectly joyful, perfect life, or if they do, they’re very lucky. That’s not the norm.

(01:23:04):

So, you know, that’s how I, that’s how I try to approach it. And you know, I also did a whole webinar in a whole episode on no ways I managed stress with rheumatoid arthritis. And there’s a lot more detail in that one. So I will put that in the show notes too. So the last little thing we’re wrapping up here, but I, I, when I asked people to send me questions or ask me anything, I ended up actually getting a really sweet message. And this person wants to remain anonymous, but she said, “I want to let you know that I made the right decision to sign up for your Rheum to THRIVE classes. It was you and the group members that encouraged me to take methotrexate and to conquer my fear of it. I now feel that I am not alone in my journey and I have somewhere to go for answers.

(01:23:49):

I hope that after the six months of classes, I can continue to connect with their group for support. Also hearing you be open about your anxiety. I am now more accepting of the possibility that I might have anxiety and maybe depression as well. And I’m now seeking the help of a counselor,” more power to you. So that was just totally a surprise to me to read. I mean, not, I wasn’t surprised, but that I didn’t know that when I asked people to do the, ask me anything, that they would all, I would also get like this really beautiful testimonial for my program. So I was very happy to read that. And I just want you to know that the next time I run, the six month room to thrive group will be in April of 2022, but the wait list is open now. So I’m going to run it twice a year.

(01:24:35):

And again, part of that is my trying to be a little bit more conscious about my schedule, not over-scheduling myself, I’ve been doing it three or four times a year, and now I’ve decided to do it twice a year. So you don’t want to miss it cause it’s just going to be once in the spring, I’ll start and then another time in the fall. So it will be April and October start times. And there is a possibility of joining a longer like post-program group called thrive graduates if, if you still want to stay connected after the six months. So I’ll put that in the show notes. And I also am going to be running a discount on the self-paced online course, rheumatoid arthritis roadmap through November 30th. So look in the show notes for that as well. But yeah, so we’re at the end.

(01:25:17):

I can’t believe it again. I’m just, I’m so honored that you’ve taken the time to listen. I always, always want to hear your feedback. You know, it can be the minutia, like things that you don’t, that the audio quality wasn’t great, or that you didn’t like how long the show notes were or that there was an error on the transcription on the website or just content ideas. You know, I would love to hear for 2022, who do you want me to interview? What, what do you want to hear more about the mental health piece, the patient perspectives, the provider tips, you know, my personal story or advice and tips. It’s just, I, right now it’s very much kind of a mixed bag of just what I personally find interesting and what I’ve noticed that the audience finds. Interesting. So again, it kind of

(01:26:03):

Anchored with my mission of helping educate, empower, and support others with living with inflammatory arthritis. So thank you again. I am so happy to be celebrating 50 episodes and almost 30,000 downloads. By the time you actually listen to this and we might be at 30,000 downloads of the arthritis podcast in a year and a half. So for now I’m going to sign off, but if you have anything else, always feel free to email me@infoatmyarthritislife.net. Thank you. Bye-Bye.