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Summary:
In episode 150 of The Arthritis Life Podcast, Carrie shares her inspiring journey of living with “difficult-to-treat” axial spondyloarthritis while building a new life in Taiwan after growing up in Canada. She opens up about her struggles with treatment-resistant symptoms, her experiences trying various medications, and how these challenges motivated her to create My Several Worlds, a blog dedicated to patient advocacy. Carrie has also collaborated with nonprofits to help others become empowered self-advocates.
She discusses how she’s learned to adapt to life’s changes, uncover tools to improve her quality of life, and embrace creativity as a way to thrive. For instance, she shares how her power wheelchair allows her to explore her surroundings while conserving energy, and how her Spoonie Coloring Book brings joy and meaning to her daily life through art.
Carrie and Cheryl also dive into topics like self-acceptance, disability representation in media, and the role storytelling plays in processing challenges. With humor and vulnerability, they reflect on what it means to live a fulfilling life despite chronic illness, offering encouragement and inspiration for anyone newly diagnosed.
This episode is a heartfelt reminder that, while the journey may not go as planned, it can still be meaningful and empowering.
Episode at a glance:
- Carrie’s Diagnosis and Treatment Journey
- The Power of Acceptance: Balancing grief for what’s lost with hope for what’s possible and finding empowerment in small, daily actions that improve quality of life.
- Life on Wheels: Carrie shares how her power wheelchair helps her conserve energy and enables her to explore her environment in ways she wouldn’t if she had to walk.
- The importance of Art and Creativity: Living with rheumatic disease and adapting to life’s changes and embracing creativity, such as publishing a coloring book for spoonies, as a means to thrive.
- Books, Media, and Disability Representation: Discussion of favorite authors, including Jenny Lawson and Lisa See, and their openness about health challenges; highlighting the importance of disability representation in books, movies, and other media.
- Encouragement for Thriving with Arthritis: “Keep on going” mindset and recognizing the value of being present and finding meaning in the life you have.
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:
Carrie Kellenberger
I’m a disabled Canadian who has lived in Taiwan and Asia for more than 20 years. I live with Axial Spondyloarthritis and Psoriatic Arthritis, fibromyalgia, and ME. In the past 18 months, I’ve also received an APS diagnosis. My Several Worlds (MSW) supports people around the world living with chronic illness and disability. I’m a recognized patient leader, advocate, and award winning blogger who enjoys helping others. Chronically complex is my superpower. People often don’t think of it this way, but I’m an immigrant and can often lend a lot of expertise and assistance to people living in strange lands with no assistance. I’ve been advocating since 2009 through MySeveralWorlds.com, but I’m also partnered with several non profits including the SAA, Support Fibromyalgia Network, AiArthritis, Walk AS One, and CrossRoads Taiwan.
Cheryl Crow
Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.
Episode links:
- Links to things mentioned in episode or additional listening
- Speaker links
- Cheryl’s Arthritis Life Pages:
- Arthritis Life website
- Youtube channel
- Instagram @arthritis_life_cheryl
- TikTok @arthritislife
- Arthritis Life Facebook Page
- Cheryl on Twitter: @realcc
- Arthritis Life Podcast Facebook Group
Full Episode Transcript:
[00:00:00] Cheryl:
I’m so excited today to have Carrie Kellenberger, who’s someone I’ve known on Twitter for many years now. And this is actually our first time talking in real time on video chat. So, I’m so happy to see you, Carrie. Welcome to The Arthritis Life podcast!
[00:00:16] Carrie:
Thank you so much. I’m so excited to be here.
[00:00:18] Cheryl:
Yay! And, we’re going to talk about your story and about your work with My Several Worlds. And can you first just let the audience know, where do you live and what is your relationship to arthritis?
[00:00:31] Carrie:
Okay, so, I live in Asia. I live in Taiwan, not to be confused with Thailand. And actually, I moved here 20 years ago. I’ve spent three years in China and then in 2006 we moved over to Taiwan. It’s a beautiful subtropical island that’s low cost of living and no drama. And my relationship with relationship to arthritis is a long and complicated relationship that I’m sure we’re going to get into a little bit more in-depth in the next little while. But I am a spondyloarthritis patient with axial spondyloarthritis and psoriatic arthritis, and a bunch of other autoimmune problems because they all come together, right?
[00:01:12] Cheryl:
Yeah. Yeah. And I think if I had to summarize my experience or my relationship to arthritis, I would also say it’s complicated. So, I appreciate that answer. And yeah, I would love to hear more about, your initial diagnoses for axial spondyloarthritis and psoriatic arthritis. Did one come first or what were your symptoms and how did you get diagnosed?
[00:01:34] Carrie:
Oh, wow. Okay, so, it’s always hard to track when it starts, right, but I’m pretty sure things started around 14 years of age. And I just was, I was really athletic like you.
I know, I’ve read all your soccer and university sports adventures. I was a really athletic person. My dad is a coach. And I just thought that the aches and pains that I was having after track or basketball practice was normal. And then, I ended up getting a mono infection and things started going downhill after that. And I’d go up and down and up and down with these weird swellings, that sort of thing, bad bouts of health. And then, it would improve and in a magical period of good health, I decided to move to China maybe when I was about 26 or 27. And about six months after I arrived there, that was right after the SARS pandemic, it started hitting my shoulder.
And I couldn’t move my shoulder. And that kind of led into TCM adventures, traditional Chinese medicine, acupuncture; none of that worked, by the way. It came and went; it came and went. Now I know I was experiencing flares. And then, when I got to Taiwan, it was starting to hit my legs and my feet. And again, I just thought I was, it’s crazy how much you normalize things. Like, I just figured I’m going to the gym, I’m working out too much, I’m lifting too much weights, maybe I’m doing too much repetitions or running too long or whatever. Like, I had an excuse for everything until one day I woke up and was like what did I do to my knees? Like, it was bilateral knee swelling and they were the size of softballs and that’s when I knew that’s not a sports injury. It was the bilateral stuff that really, like, okay, there’s no way to explain that. There’s no way I did something to my knees, both my knees, like that.
[00:03:35] Cheryl:
Exactly the same way. And I think, I think we all apply like that Occam’s razor, like the simplest solution. You’re like, you’re young and previously healthy. And you’re like, well, if I’m having aches and pains initially, you just think, yeah, I must — I felt exactly the same as you. At first, I kept saying I had sprained my finger and laughing that I couldn’t remember how I did it. I was like, I must have fallen on it and forgotten. And, you know, so it’s totally understandable, but yeah, that sounds like you the smoking gun, for lack of a better word, the canary in the coal mine was, wait a minute, it’s not normal to just wake up with both knees swollen like softballs. Like, you didn’t fall in your sleep on both knees exactly the same way.
[00:04:20] Carrie:
I’m thinking, “Oh, I’ve got a class today, I’ll walk it off.” I’ll go and walk to class and walk it off. And I got back from my class that day, and my legs were even bigger. And my husband was like, are you sure you want to go out for dinner? And I’m like, it’s not really a big deal. And we went out for dinner, and then, my legs gave out that night. So, he ended up carrying me inside. And then, the next day he’s like, that’s it. We’re going to the hospital. We’re going to ER right now. They aspirated my legs, both knees there, the amount of fluid that they drew off my knees, we’re getting into the grody stuff right away.
[00:04:53] Cheryl:
That’s okay. No. Yeah.
[00:04:54] Carrie:
They aspirated both knees at Taiwan Adventist hospital, which is kinda of a foreign international hospital that we go to.
[00:05:06] Cheryl:
Watch the video version if you would like to see Carrie’s cats in the background and my dog is as usual sleeping on the bed as I record this.
[00:05:18] Carrie:
Adventist was like right away, they were like, “Oh, that’s definitely arthritis.” Like, they hadn’t done any tests or anything like that and I was like, and I remember saying, “Oh, I hope it’s not rheumatoid arthritis.” And they’re like, “We’re pretty sure it’s some form of arthritis, but we’ll run a couple of tests.” And, I remember sitting in the waiting room in the wheelchair and it hurt to sit, it hurt to stand, it hurt to move. Like, it was just radiating down my spine and through my chest and everything.
And my husband was like, “Just sit still. Like, why are you so anxious?” And I’m like, I can’t sit. Like, it really hurts so bad. And. And they sent me in for X-rays and two weeks later, they’re like, we’re pretty sure you have something called ankylosing spondylitis. And I was like, oh, thank God it’s not RA. Little did I know. And they’re like, “We don’t have an AS specialist here. We’re going to send you over to National Taiwan University,” which is the teaching hospital here. That’s what, that’s the hospital that’s putting out all of our Taiwan research on arthritis, by the way, if you see a lot of the PubMed stuff, a lot of it’s coming from that hospital.
But, yeah, I landed with a great doctor there. This was back in 2009. He pulled up my X-rays and he’s like, “These are your SI joints. And all of this cloudy stuff here in your pelvis is inflammation. And these are your knees. And this is also fluid.” So — [pause]
[00:06:53] Cheryl:
It’s okay.
[00:06:54] Carrie:
A hell raiser today. So, yeah, he was great. I was with him for three years, but I’ve just been one of those patients that it just keeps rolling. It’s very, very, very aggressive. Don’t have arthritis. It’s very difficult to treat.
[00:07:13] Cheryl:
Yeah. I’m so sorry. Yeah. And that is something that is an official phrase, difficult to treat, like, rheumatoid arthritis or difficult to treat axial spondyloarthritis, which it just means that, you might’ve heard these like commercials for the pharmaceuticals and I’m a case study of it. The best-case scenario is when the medications work well, my first six years I went into remission swiftly and I thought that was going to be like that forever. But there are people who never get that experience who have to kind of cycle through all the different meds. And it sounds like yours, or if you have a remission, it’s very short-lived. And then, your body yeah, you tell me, tell us more about your treatment journey, if you don’t mind.
[00:07:58] Carrie:
I can’t even think of any meds at this point that I haven’t tried. Like, I often watch your videos and I’m like, why doesn’t that work for me? Like, why? Why am I on this journey? What is going on? So, from 2009 to 2014, actually, were probably — well, 2013 — were probably my best years and that was one of my best doctors. And he had me try, plaquenil, sulfosalazine, methotrexate, all of the older line of DMARDS, the standard line of DMARDS you have to fail before you get into biologics. And those worked for a little bit. And then, he retired, and I ended up with a new doctor that she, I don’t know, there was just not a vote of confidence with that doctor. She immediately started focusing on the fibro, which is another problem. But by that point I had an idea of what was what, like, what’s presenting as arthritis and what is the fibro and what is the ME?
I didn’t really like her bedside manner, so I ended up finding another AS doctor and going to a different hospital, and he actually had AS. And that was where things started to go really wrong, because he didn’t believe that women had AS, could get AS. So, he took that diagnosis off my paperwork and started treating me for fibro, and ME, and anxiety, and depression. And left the AS untreated.
[00:09:33] Cheryl:
So, none of those other conditions you mentioned would cause bilateral knee swelling, like, for the record. Like, anxiety, fibromyalgia do not cause fluid needing to be taken out of your knees.
[00:09:45] Carrie:
Yeah, I have polyarticular arthritis. It’s in more than five joints. So, I’m like, how can I —? Like, are you sure I don’t have rheumatoid arthritis? Like, he’s like, “But women don’t get it.” I have it, and women don’t get it?
[00:09:58] Cheryl:
And it’s untrue. That there was this misconception, it used to be thought that the majority of people with ankylosing spondylitis or radiographic or non-radiographic axial spondyloarthritis were men. But now they think it’s about 50-50, right?
[00:10:12] Carrie:
Yeah. Like, I run women’s groups. They’re locked private groups with thousands and thousands of women in it that have AS or axial spondyloarthritis or non-radiographic spondyloarthritis, like psoriatic arthritis. And I remember telling him, that’s not true. Like, that’s not true. And I was bringing stuff in from the Spondylitis Association of America, because they had reached out to me right away. I think you know that I do some work with them. I was bringing in studies and he thought I was — I’m sure he thought I was trying to teach him.
But I’m like, why can’t you just —? Like, now I have to fight to get this stuff back on my paperwork, and that delayed my access to biologics, and then that created damage that is irreversible now. So, it’s been a while. I would say that he was my second rheumatologist, right? So, I still didn’t, I went from a rheumatologist that was really patient and willing to educate me to a rheumatologist that did not believe me and was gaslighting me. So, I didn’t really know how to advocate for myself back then. Didn’t really know how to like push or ask for things or say, “This is what’s happening,” and didn’t have the knowledge to like go and find somebody else. I was with him for about a year and the treatments that he had me on for fibro and anxiety ended up interacting and I ended up with a serotonin, serotonin syndrome.
[00:11:48] Cheryl:
Oh no.
[00:11:49] Carrie:
That’s when I finally left him.
[00:11:51] Cheryl:
So sorry.
[00:11:53] Carrie:
Yeah, I had a couple other rheumatologists after him, the third or fourth one, I was able to convince them finally to give me biologics. They were like, “Oh, we think you have psoriatic arthritis too.” And that happened in 2018, I think. And that’s when I said, “Look, like all these first line meds have failed. Please, can I try biologics?” And at that point, Taiwan only had one or two. We had Enbrel and we had Humira. And he was like, “Well, you can, but I can’t get coverage for you.” So, at that point, I couldn’t walk. I couldn’t bend my arms. I couldn’t bend my legs. I was crippled by it. So, I just said, well, I’ll pay for it then. So, I was paying, 1500 USD out of pocket in cash every month for four years for Enbrel. And the first three years were now, they were actually pretty good on Enbrel until it stopped working. And then, I came out of remission. And that’s when the search began in 2022. And since then, I’ve been on eight other different kinds of biologics, IL-17, IL-23, and JAK inhibitors.
[00:13:09] Cheryl:
Well, and I always try to take a minute to define some of the acronyms just because some people might be like very newly diagnosed and, like, what language are they speaking? But yeah. So, DMARDs, you mentioned earlier, traditional, they’re, what do they call them, traditional DMARDs, like Disease Modifying Antirheumatic Drugs, right. Those are the ones, like, the historically cheaper and easier to get meds, like methotrexate, sulfosalazine, plaquenil. Those are like often the first-line medications for inflammatory arthritis.
And then, there’s a second class, the biologics. And those are the more expensive because they’re derived from living tissues apparently. I don’t like to think about that too in-depth, but I’m like, but they, and what, is great about them is that when they work, they really work, and can put people into remission, meaning you still have this diagnosis, like, you still have psoriatic arthritis, right, or axial spondyloarthritis, or in my case, rheumatoid arthritis, right, but, you have very little to no disease activity, meaning you don’t feel stiff in the morning, you don’t have pain, you don’t have systemic — in the ideal world — you don’t have systemic symptoms like fatigue, and then, and your blood markers and everything are lower.
But what’s, the best, the great thing about our immune systems is that they’re like, or that they’re overachievers, and the bad thing is that they’re overachieving to try to attack our own joints in the case of inflammatory arthritis, and then sometimes they work overtime to create antibodies to our medications, or just thwart the medications somehow, and no one understands exactly how, as far as I understand, no one knows why that happens sometimes, otherwise they would figure out the solution to it. Like in your case, okay, well, we’re going to make it work for her.
But, yeah, unfortunately, it’s like, I don’t know if you’ve ever — sorry, this is already a little tiny bit of a tangent, but in a lot of the academic conferences, sometimes there’s this idea because there’s been this, at the population level, they see change when the biologics came in, and how many people are doing — more people with rheumatoid arthritis and axial spondyloarthritis and psoriatic arthritis are doing really well than ever before. But sometimes it can lead people to have this erroneous impression that everyone’s doing great. So, that’s why I think your story is really important, not to just, not to be like, Negative Nancy, like we should exclusively only focus on these stories, but also like, don’t forget that these, aren’t perfect, they’re not working for everyone.
[00:15:40] Carrie:
Yes, I’m so glad you said that, too, because I am not a Negative Nancy, at all. I’m really a positive person, but I also feel like I’ve really been through the wringer with medications. And my current rheumatologist, I call him Dr. Badass. And he loves that. He’s a total boss. I really love him. He is supportive. He educates me. He encourages me. Like he’s everything you want in a rheumatologist. I was seeking a long-term relationship with a rheumatologist and I happened to find him. And I keep looking now for a long-term, I’m seeking a long-term relationship with a good medication. And he’s trying for me.
He’s really doing his best and every appointment he’s like, don’t lose hope. He’s like, like we have to rule out anti-TNF meds now because you’re allergic to them, but don’t lose hope. There’s always new meds coming. And we need your voice. We need your story. We need to hear from people like you because you are not a typical arthritis patient. And for the first time, a month ago, I heard him say ‘D2T’, and I was like, oh! Because I’ve been going to ACR. I know what those terms are. I know what they are. He’s like, how do you know it? I’m like, you’re going to ACR in a little while, aren’t you? I cannot express to you how validating it was to hear a doctor say your arthritis is really difficult to treat and it’s really aggressive and it seems to be medication resistant. Like, 2009, I’ve been waiting to hear those words.
[00:17:16] Cheryl:
Yeah. Yeah.
[00:17:18] Carrie:
Just for somebody to say you’re not reacting the way we expected you to react or you’re not responding the way we expected you to respond.
[00:17:27] Cheryl:
And it’s not your fault. And we’re not using that to — we, in their case — are not using it to say, “Well, you must not really have ankylosing, axial spondyloarthritis.” They’re like, no, you do have it, you’re in this category and it happens with, like, depending on the study, up to 20 percent of people with rheumatoid arthritis, I mean, I have a weird case where I’m on my fifth biologic in 21 years. And so, on the one hand, I’m like, I’m so grateful that I’ve had many years within those 21 years of the only time I had a true sustained remission was those first six years, which again, is amazing. I took it for granted because I thought it was going to be forever. I didn’t understand that it could, it didn’t make logical sense that I would take the same medicine and it would work one day and not work the next day.
[00:18:14] Carrie:
And they don’t tell you that. Like, do they know that? Do they not know that? Or they just —?
[00:18:19] Cheryl:
Well, it’s funny because actually, yeah, when I make social media content, like educational content. Sometimes it is this like ignorance is bliss, but knowledge is power thing because people will say, “Wow, I didn’t know that could happen.” And I’m like, I’m always like, I would’ve rather have known ’cause I would’ve done certain things that I always thought I could do later, like run a marathon. Like, little life goals I had. Not to say that no one was rheumatoid arthritis can’t. Just with where my body’s at now, that’s a little less realistic of a goal, like more like a 5K. I’m still like so grateful that I can do something like a 5K run. I just wouldn’t be able to do right now a marathon, that kind of thing.
But it’s like, I just didn’t, I made, I took my body for granted, even as someone with a chronic illness, because I just thought I had the solution, that the medication was going to work forever. And so, so there’s also, there’s the difficult to treat, that’s like very aggressive, like yours, and then there’s mine, where it’s like, it’s difficult-ish to treat in the sense that like I know other people who have had the same medication for 20 years where they’re, so they’re a little easier to treat, but I’m definitely not in as tricky of a situation as you are with you, you have not gotten many years of relief, to put it mildly.
[00:19:30] Carrie:
Yeah. I mean, Enbrel was life changing for me when it worked. I was just shocked when it stopped working. I kind of wish I had done a little bit more and my husband reminds me, “You were doing so much. You were already doing loads, Carrie.” But yeah, it’s shocking once you don’t have a med that’s actually working and giving you that quality of life to be able to go and do things. Like, my arthritis is my cage, and I live in my cage as well as I can, but it’s still very limiting like I can’t, I’m housebound. Like, I can leave my home maybe once or twice a month. I have maybe 90-minutes to two hours outside of my home before I start getting overtired and then getting that crashing feeling. The fibro really aggravates it a lot as well. I’m a homebody because of it. That typical, like, stereotypical, arthritis reclusive person that we read about in novels when people weren’t able to access treatments, I’m living that right now, but in the best way possible, of course.
But, yeah, it’s very strange. Like, I would love to find a medication that would work. And then, I’m also really glad, especially, because I’m in Taiwan, I’m not having to deal with insurance companies like you guys are dealing with. Or having anybody decide to switch my meds. Because when I do find something that works, I’m not going to want to switch. I’m going to want to try and get as much out of it as I can. And we don’t have to deal with that kind of thing in Taiwan. Once you’re on a med that works, they’ll keep you on it. The government handles our insurance, not insurance companies.
[00:21:18] Cheryl:
Yeah, that is really, that’s very topical right now. And I’m glad that you don’t have that barrier. And one other thing I wanted to make sure to cover, I had, I started this new, actually new question that I didn’t use to ask, or I used to have it on my list of questions, but not usually get to it. It was like, what’s a day like, what’s a day in your life like with your condition. And you just painted a picture that you’re mostly at home.
And also, when we had talked about, like shared notes and bullet points before today’s conversation, you also mentioned that you have been experiencing or had been experiencing with the anti-TNF meds, the pustular psoriasis. And that’s been, that’s why 2024 is your year of a thousand cuts. Which, as a fan of the Taylor Swift song, Death by a Thousand Cuts, I like that name. But can you tell us a little more about what that was like? I know I’ve had Jenny Weaver on the podcast. She’s also experienced that. And then, a little bit more about the day in your life, whatever you’d want to say about that? Sorry.
[00:22:24] Carrie:
Okay. So, remind me about the day in the life and I’ll start with the pustular psoriasis stuff. Because the year of a thousand cuts has been weird. Like, I’m gonna write a blog post about it at some point. Because it’s just wild. Like, again, you know, you’d think — I came up with so many excuses for why this stuff was happening with my skin and never thought it was my medications. So, to back things up, in November I was on Taltz, and Taltz stopped working, and my CRP and ESR started going up. It started skyrocketing. And then, I got a bacterial infection from a routine dental cleaning, and then to kick it into high gear, I got a shingles infection.
So, my immune system was really low. So, that kind of knocked me out for the last part of November, all of December, and most of January. And when we started working towards me starting a new medication, we were waiting for my doctor to get the approval from the government for me to start. And he, because I’d already tried Enbrel and Humira and he’s like, well, you’ve tried it before. He said, your joints are messed up. Like, it can’t hurt to try these injections now that these co-infections have cleared and see if it helps until the Symphony comes in. So, I did Humira first, and I did two injections of that. And like, it didn’t even happen right away, Cheryl. Like, it was like a week and a half, like, that’s why I didn’t clue into it.
A week and a half after the first Humira injection, I started getting like these lesions on my lips. And it was spreading on my face. I’ve got blotches all over my face, and it was raising up in bumps, and I’d had shingles. So, I was like, maybe it’s shingles? Like, is it, like, what’s going on? Like, maybe I started the medications too soon. And then, I did the second Humira injection, and my lips were, like, massive. It was like, oh, my mom was here, and she was like, “That’s not normal. Like, what’s going on with your face?” And they were, it was blistering. My skin was blistering. My arms were blistering. So, I took a photo and I sent it over to my caseworker and she said she ran to my doctor and he said, “Stop it immediately. You’re having some sort of allergic reaction.” I’m like, but I’ve already had the medication. I didn’t like, I remember having a mild reaction to it the last time I tried it, but nothing like this. And then, he said, “Well, let’s,” he said, “Let’s try Enbrel.” Cause we’re still waiting for the Symphony to come in.
And I did one shot of Enbrel and that made it worse. And I’d been on Enbrel. So, of course I was like, oh, it’s something I’m eating. Or maybe it’s because I’m wearing a face mask, or maybe I used the wrong product. Maybe it’s my shampoo. Like I came up with a thousand different excuses for it. So, the cuts, it basically felt like there were tiny micro cuts all over my skin, all over my body. Like razor blade cuts. And I got this, it’s so weird. It was like mold. It felt like mold. It felt like my skin was rotten, busting fruit. And it was all over my lips. And then, it started coming out of my belly button. And I was like. That’s weird. Like, this is like a hormone dysfunction, or what is going on? So, I told him about it and he’s like, okay, you’re clearly reacting to Enbrel, but we have the Symphony, so let’s get you onto the Symphony.
And I didn’t have the immediate facial lesions with it. But as I was tracking everything that was happening, it was happening. I was getting these eruptions almost weekly. Like, bi-weekly, and then every week, and then it would die down for a couple of days, and then it would come back. And then, it would die down. I did ten months of this. And, I can’t tell you how many times I was like, I can’t take this anymore. Like, it’s painful. It’s really, really painful. Like, it, my lips were melting off, basically. Shedding skin, my skin was sloughing off, and I need to stick with it because my joints were bummed up. I mean, they were full of fluid and I kept flagging it with him. And he’s like, you must be reacting to like, you must be reacting to something in your house, like maybe a household cleaner or something.
I went through our household cleaners. We already use natural stuff. I switched all my shampoos and stuff out to non-scented, no sodium lauryl sulfate. I scraped my diet right down to, like, took it right back to the basics, did an elimination diet, and it was still happening. And then, in September, beginning of September, he’s like, your CRP and ESR are not really moving on this. It’s actually getting worse. I think Symphony is not working. I think we should just eliminate anti-TNF completely because it’s not working for you. I’ve observed you on three of them now. And then, I stopped Symphony and It all cleared up. So, now, I’m like, it was the meds. It was the meds all along.
[00:28:00] Cheryl:
Oh, my gosh. I’m so sorry. That is just so, it’s the worst feeling to feel like you went through all this pain for like, well, for no reason, you know what I mean? Like, it didn’t even help in any way. The medication didn’t.
[00:28:18] Carrie:
So, I’ve never heard of another patient having that happen. I’ve never heard of like, I’m like you, I’m a nerd. I love to read articles and read what other patients are going through it. I have not read anything by another patient except for our friend, Jenny Weaver, who has something similar. Nobody could explain the moldy taste. Nobody could explain the belly button stuff. ANd the lip stuff was just wild. Like, if you saw, I’ve got photos of it. It’s just, It’s nasty.
[00:28:48] Cheryl:
Yeah, that sounds awful. I know I saw a TikTok video once and I know that’s not the place to get valid information, but a patient’s story of someone’s real story of getting a rare, they had, they were saying it was a rare medication side effect. And it was like these giant boils all over their body. But I don’t know if it was technically pustular psoriasis or something else. But anyway, I’m so sorry you had to deal with that. And oh, when we say anti-TNF or TNF inhibitor, that’s one classification of the biologic medications like, Embrel, Humira, Remicade, and Symphony is a TNF, right? Yeah. Yeah. So, I’m just, yeah. Now we know. I’m so glad it cleared up, but I’m sorry that wasn’t higher on the list of maybe ideas that they had for why you were in so much pain.
[00:29:42] Carrie:
I think he was just trying to pull in as many resources as he can. Like, he’s done his job. Like, I could not, I couldn’t bend my arms or my legs. I was in a wheelchair. And I didn’t go to him asking him to get me coverage, I was willing to pay for the meds, I just wanted him to clear up the swelling in my joints. So, not only did he help me get coverage and took that 1500 payment in cash, like, he couldn’t believe I was paying that in cash every month for four years in a row. He managed to get me coverage and basically, he submits for a medication and the medication coverage comes in, about two to three weeks. So, I’ve got lifetime coverage for any medication that he thinks is necessary.
[00:30:26] Cheryl:
Right. Right.
[00:30:27] Carrie:
I’ve got a trial of the meds and I’m reacting to the meds. And I remember telling him when I saw him, like I’m one of the, I was one of those kids that had a lot of allergies when I was a kid. And like when my parents did the allergy, that pin, that pinprick, skin test when you’re like, you see what you’re allergic to, I was that kid that had like 200 allergies. So, I remember saying to him, I react to medications. I have allergies to medications. Are there things about these medications that I should know ahead of time? ‘Cause I’ve had doctors say they’re all the same. I’m like, they’re not the same.
[00:31:03] Cheryl:
No, no. Yeah. And there are charts for them. No, it’s like, if this, then that, there’s like diagnosis, or there’s a treatment, what do you call them, guidelines, evidence-based treatment guidelines, where it’s if they fail this one, then this one. And like, for me, I was told after — and this is for rheumatoid arthritis — after failing two TNF inhibitors, it was like, you gotta, don’t go to the third. Go the chart. At that time, it might have changed by now. They review these, at least American College of Rheumatology reviews these every four or five years. Typically, then they’ll say, okay, well, if you’ve failed two TNF inhibitors, then move on to the next class, like Orencia was the next one I did, but that’s rheumatoid arthritis. So, that could be different for your condition.
[00:31:46] Carrie:
Yeah, my doctor’s been talking about a biologic switching, swapping treatment protocol since December. So, he was thinking to attack it from two pathways, two inflammatory pathways, anti-TNF for six months and then switch to IL-17. Because he said, those are the medications that you’ve had success with in the past. So, I was doing IL-17 and then that kind of pooped out and then he’s like, okay, so we’ll go back to the anti-TNF. We’re swapping now. And then, he’s like, oh, okay. So, that’s not working. So, now we have to move to JAK inhibitors. And the inhibitors, I have a clotting disease. So, clots are a high risk with JAK inhibitors. And I’ve had DVT and blood clots in 2023. So, now I’m doing a JAK inhibitor and, where’s my wood?
[00:32:41] Cheryl:
Knock on wood. Yeah. Are you on Xeljanz?
[00:32:44] Carrie:
I am on Rinvoq.
[00:32:45] Cheryl:
Rinvoq. Okay. I’m on Xeljanz. So, solidarity, the JAK inhibitor solidarity.
[00:32:51] Carrie:
I’m hoping. Like, it seems to be. I don’t want to, I don’t want to jinx myself, but it seems to be doing okay so far. I’ve got less swelling in my joints. Seem to have a little bit more energy. I’m not dragging. And that kind of just takes me to your other question, which is, what is it? A day in the life?
[00:33:15] Cheryl:
Yes. Yeah. So, I’m going a little out of order, but yeah, let us know a day in your life. And then, I also want to make sure to talk about your experience as a health advocate and with your website. ‘Cause I really want to make sure our listeners know about it, ’cause it’s awesome. Yeah.
[00:33:32] Carrie:
A day in the life. So, I’m a, I mean, I’ve already mentioned, I’m housebound. It’s very hard for me to get up in the morning. I’m one of those patients that has a lot of stiffness in the mornings. It doesn’t take 30 or 60 minutes for my stiffness to go away. Usually, my mornings are shot up until about one o’clock, which is when I can start get moving. I get most of my activity in between one and five. Those are my best hours. And then, evenings are I try to wind down. So, my days, I think you know, like, I’m a pretty prolific writer. I write a lot.
I’m running a business called Reach to Teach, which is like a boutique consulting business that works with ministries of education to help them find teachers for their English programs. So, I do that during the day. And then, I work on My Several Worlds or my freelance writing. And then, my evenings are dedicated to art. And if I can squeeze a walk or if I can squeeze a roll around the park, then that’s what I do. But most days, I’m just not well enough to leave the house. It’s just a plain and simple fact.
[00:34:52] Cheryl:
Yeah. Yeah. It sounds like you’re very busy with what you’re doing, though. Running a business, like, for me, is, not, easy at all. So, I applaud anyone who does that. And, man, just to find a way, I don’t know if you’ve outsourced any of it, or have other people that work for you, or just you’ve found a way to put the work between one and five. ‘Cause that’s something, just from my experience, it can take over your life if you don’t have boundaries around it. I’m laughing from experience of not doing that. Yeah.
[00:35:27] Carrie:
Yeah. Like, I became a business owner shortly after I got my as diagnosis in 2012, so when I should have been resting and taking care of my health. Instead, I was building my business and expanding on it and traveling to different countries and meeting with people at different ministries of education in Georgia. And here, and Thailand, and I should have been resting. I should not have been doing that stuff. Hiring people, trying to get them on board and get everything set up, and I’m a website developer. So, I was burning. And then, somehow for some silly reason, I decided to take on a chairwoman role with the Canadian Chamber of Commerce. And I buried myself in work. So, you know, I still didn’t really have that understanding that my arthritis was really, really, really serious. So, I borked myself.
[00:36:24] Cheryl:
Yeah. Did you have a burnout period, like a come-to-Jesus moment? Not meaning that religiously, but more like a, ‘okay, this is not sustainable anymore’ moment?
[00:36:35] Carrie:
Yeah, in 2018. That was about five years after we started our business. In 2018. I realized I can’t keep doing this. I’ve got to start cutting back. And I was slicing things out of my life here and there and then started to realize I needed to pull back on Chamber activities. I was trying to manage that while doing as much as I could from home and pulling in people that could do stuff on their feet because I couldn’t do it, and doing stuff at home with the company rather than going out.
My husband would go and meet with schools for that sort of thing, and I’d do the online stuff. But yeah, I had to pull back on all of it. So, I do keep busy. I’m really good at pacing. but you know how it is. November rolls around and then you’re trying to push it all back in. You got to finish up your year end stuff. Like, it takes a toll. It can take a toll. So, I really have to remember to stop, rest, and pace all the time.
[00:37:37] Cheryl:
And I love that you’re, like, having, balance in your life in the evenings, like, doing art. And that’s something I’ve been trying to do just, literally, like, most parents are doing with their children now. I’m trying to do it myself as well, which is, like, screen-free time, because I don’t — I do so much on social media and I love it. It’s just that it’s can it can be like it’s endless, right? You could be connecting to people and responding and correcting a misinformation on the internet 24/7 and burn yourself out.
So, I have to remind myself, okay, take some time away from the Internet and actually do something with your hands. Maybe if my, luckily my hands aren’t too sore most of the time, or I’ve been literally doing puzzles with my son, my 10-year-old, lately. And I did a little bit of paint by numbers ’cause I was just like, it’s just a very meditative. It’s really fun and I was like I’ve almost done. So, everything I’ve been doing is like at a screens with the way, like, either on the phone or the computer, and I’m just, your situation, it’s reminding me to — your day in life is reminding me to keep being devoted to that.
[00:38:45] Carrie:
But yeah, it’s, you know, you got to keep that creativity going, right? When life hands you lemons, you write or you create. And I think you’re living that. I mean, you’re doing that already. I mean, you’ve got a little bit of some lemons going on. You’re thinking of it and impacting and touching other people’s lives in tremendous ways, Cheryl. And that’s like one of the mottos that I go by is, like, okay, I’m dealing with these awful things that are happening with my health. My health is not great, but out of that chaos, I can create a little bit of something beautiful. So, that’s what I focus on.
[00:39:25] Cheryl:
Well, and that segues perfectly into your website, My Several Worlds. You have multiple, but the one that I’m thinking about is the one that I first learned about, My Several Worlds, and where you share about your own chronic illness journey. You have art. You have also plain language summaries, which are so important patient education materials. So, tell me a little bit about how you started that and what some of the responses have been.
[00:39:51] Carrie: Okay. So, My Several Worlds actually started as a travel and culture website before I got sick.
[00:39:56] Cheryl:
Because, that’s right, because you said 2007. I was like, wait a minute.
[00:40:01] Carrie:
It is 2007.
[00:40:02] Cheryl:
Yeah.
[00:40:09] Carrie:
It’s what it’s 2006 or 2007. It’s 18 years old today. But it did start as a travel and culture website. Back then I was still doing a lot of travel writing, like freelance travel writing for Travel and Leisure Asia, other travel publications. So, it was actually one of the top travel blogs for a long time. And then, I got sick and I was like, what am I going to write about if I can’t travel and experience things? Like, you know, I built this whole thing on traveling. I’ve been to 35 countries and this is what people knew me for. And then, I was like, okay, most people would create a new website and I didn’t want to do that.
My Several Worlds has special meaning to me. It’s written by one of my, it’s the name of the book of one of my favorite authors. You did ask about books, so I’ll give you reference. My Several Worlds was written by Pearl S. Buck, who was a missionary, a Chinese missionary. And she spent half of her life in the US and half of her life in China. And that was the only book I took to China with me when I moved to Asia. So, I was modeling that whole thing off of her life and thinking that I could like explain different cultures and worlds that I live in. And then, suddenly I got sick and then I thought, okay, well, I’m still living in a world. It’s, you know, a world of being sick. I’m going to start transitioning it over to being someone that’s talking over here at least about chronic illness and chronic pain. And I was not expecting that there would be so many people that would resonate with that over here.
And I didn’t think that people would understand that, I mean, My Several World is huge. There’s like 900 articles on it, but a lot of those articles are dedicated towards navigating foreign health care systems in a different language. And I think North America is just starting to, like, touch on this, the importance of this just in the last couple of years. And this is something I’ve been doing now for over a decade. It’s hard to navigate all of these any kind of a hospital appointment or a doctor’s appointment in your own language, let alone doing it in a second language or in a different culture. There are different expectations and things that are happening. So, a lot of my articles are focused on how to do that. Or words that you can use with doctors here in Taiwan that they’ll understand to explain. How do you describe chronic pain? Words that doctors will understand. Attitudes that you’re going to run into with Asian doctors, or things that you need to do here that are different from Western healthcare.
And I was not expecting that topic to resonate with people, and I was shocked when I realized North Americans liked those articles too, because they were like, we didn’t know that’s how you do that. Like, oh, I’ve been writing it for Westerners here. I didn’t think that people would be interested in it back home. And they’re like, no, they’re like simple, plain language summaries that we can use for our own hospital appointments. So, that’s how I’ve moved into the chronic illness, chronic pain disability space here. And recently I’ve been doing a lot of articles, especially on disability, because disability is a taboo subject here in Taiwan, as is mental health. I’ve really been trying to focus on raising awareness for people with disabilities here because most people think that it’s something that you have to hide. It’s not something that you put on display.
[00:43:56] Cheryl:
I’m really grateful you mentioned that. I’ve had a couple, I know each culture is totally different, but I had two different people from Southeast Asia or South Asia, sorry, like India and talking about that and with respect to their culture as well and how difficult it can be to feel that validation when you want to show your story, but like you have pressure from your family to maybe hide it. “Oh, we don’t talk about such things,” that kind of thing. So, that’s a whole, we should have a whole episode on that because that is so, so, so fascinating. And I think it’s great that you’re giving so many resources to people around the world. I would, I traveled to China for a few months to visit my husband who was on a work thing there while I was pregnant. I actually got pregnancy care for the first trimester in Shanghai. I was like, man, I should have, I didn’t, I guess I didn’t know you back then. That was 2013. So, I should have looked you up, but I could have been like, help me. But they were really nice. sorry.
[00:44:57] Carrie:
That’s about the time I was getting started with it. And it was just about my own journey, I was just getting started. I’m so sorry that happened to you in China.
[00:45:05] Cheryl:
Oh yeah. No, actually it was totally fine. I somehow found a, I remember that they spoke English. I found a place that spoke English, but the provider spoke English. So, that was totally fine. Awesome. And you’ve done, in addition to having your own site, you’ve also, I know, collaborated and partnered with other non-profits, right? Can you tell me a little bit more about those?
[00:45:33] Carrie:
Oh, gosh. Okay. So, I love my non-profits. Spondylitis Association has been holding my hand. I’m a Canadian, by the way, so it’s like to have an American AS non-profit reach out to me and say, “Let us help you through this,” it’s amazing. They don’t like to say that they’re global, but they are touching hearts all around the world. Richard Howard and Sean Ewert and Jason Blackwell and all those guys are just, they’re fantastic people and I’ve been collaborating with them on a number of things over the last little, well, 10 years.
[00:46:07] Cheryl:
Wow. Time is very strange lately. I’m like, what is time?
[00:46:13] Carrie:
Yeah, so I met them through Walk Your AS Off for Walk AS One, which is our main non-profit, and that has just actually been taken over by the Spondylitis Association of America.
[00:46:27] Cheryl:
Oh, okay.
[00:46:28] Carrie:
That’s how I met them, and I’m team captain of the Walking Spondies, which is a group of walkers that walks for awareness. We were the original walk group, or that was the original walking event. It was established in 2011, and we tried to get enough steps to walk to Mars to raise awareness for AS.
[00:46:47] Cheryl:
I love that. I really love Walk Your AS Off. It’s just, it’s so catchy.
[00:46:53] Carrie:
So many great team names. And then, we had to — there were so many good team names. So, we’re actually, I’ve got a chat with Sean coming up in January to talk about how we’re going to plan our mode of attack for our campaign coming up in May. So, yeah, I do lots of things with the Spondylitis Association of America. And I also attend ACR and the Spondy summit on their behalf. And I work with Support Fibromyalgia Network with Melissa Talwar. I’m pretty sure you’ve heard of her.
[00:47:25] Cheryl:
Oh, yes. I’ve been, I’ve interacted with her just online and I think she was at the ACR conference like a year or two ago that I met her in real life. Yeah.
[00:47:37] Carrie:
So, we do a fibromyalgia conference every year and pull in a bunch of people to talk about fibro . And that has been going really well. And I’ve been involved with them pretty heavily since 2019 or 2020. And then just, well, I guess it’s not recently. I’ve been with AiArthritis as well for two or three years, but I’m not as busy with them. SAA and Support Fibro keep me pretty busy, but I try to pull out some extra stuff for them in May, which is our awareness month.
[00:48:11] Cheryl:
That’s so great. And I think, if anyone out there listening feels like, you want to like, a lot of people get, come up to me and say, like, how do I get involved? Like, I want to connect other people with my condition and like do something, like participate in some of these online events or walks. And going to your disease specific non-profit is a great thing to do. Or even, you can look at their website and choose what interests you the most. There’s legislative advocacy, the people who are like really into the government and figuring out and wanting to advocate for better policies. And then, there’s, you know, I really love like pediatric stuff. So, I volunteer for the Arthritis Foundation in person, juvenile arthritis camps in my area where they actually have an overnight camp for kids with arthritis and rheumatic diseases, which is great. There’s just so many different there’s being involved in educational events creating blogs. And there’s so many things you can do and it’s a great way to connect other people. So, anyway little plug for that and they always need more volunteers.
[00:49:13] Carrie:
Volunteers. Yeah, exactly. Everybody’s always looking for volunteers and people who are willing to share their story and all you have to do is reach out. I’ve never met a non-profit that hasn’t said, “Oh, thank you for offering.”
[00:49:26] Cheryl:
Yes, exactly, I love that. So, a couple rapid-fire questions, I feel calling rapid-fire for each one could be a whole episode. What are some of your words of wisdom for somebody who might be newly diagnosed with axial spondyloarthritis and/or fibromyalgia?
[00:49:48] Carrie:
Okay. I’ve got two main pieces of advice. Reach out to your local non-profits right away. Send out some blanket emails to a bunch of them. One of them is going to get back to you and send you resources. And also, patients learn overwhelmingly from other patients. Find those veteran patient leaders and connect with them and start learning from them. You don’t, obviously we’re not, we’re not meant to be giving medical advice or anything like that, but the amount of information that I was able to get from veteran patients with fibro and ME and with AS when I first started my journey. Like, it wasn’t my doctors who were really educating me. It was other patients who had been living with it for 10 or 15 years that were saying, “Hey, this is what’s coming, or this is what, might be down the road for you, something you need to think about.”
[00:50:39] Cheryl:
Yeah. I think that’s beautiful. Yeah. They say now, nowadays, there’s a phrase I hear a lot, which is patients are the experts in their own experience, in their own care. And from an occupational therapist perspective, that’s even more true because then, I don’t know how to evaluate how true it is, but what I mean is like people are problem solvers in their own lives. And if occupational therapy is all about helping you find creative workarounds, ways to keep doing what you love, and what brings you joy, and what’s required for your existence with your disability or your health condition. And so, we learn all these life hacks and adaptations and energy conservation strategies and tools, but sometimes you learn the tools in the book or on paper. It’s totally different than having to use those tools every day, right?
[00:51:27] Carrie:
Totally. And the number one tool that I learned from other patients was pacing. I’d never even heard about pacing until someone in my fibromyalgia group was like, “Do you even know about pacing? Like, do you understand about pacing and what you need to do and what your energy envelope is?” And then, I was like, oh, wow. Yeah. Like, that was a huge lesson. Why don’t doctors talk about that? Like, I don’t understand. They should cram all this information into one appointment. But I’m like, if some doctor had told me, in 2009, you need to pay attention to how much energy you’re spending physically or mentally, maybe I would have been smarter about how I approach things.
[00:52:09] Cheryl:
I think my just little opinion is that patients should have access to the multidisciplinary team very early on, because no matter how well-trained the doctor is, their visits are always constrained by time, like, 20, 30 minutes. Whereas like for OT, we get 60 minutes, PT gets 60 minutes, social work gets 60 minutes, this is in the United States healthcare system. And of course, insurance likes to say you don’t need this, you don’t need OT and PT, but you could even say two visits upon initial diagnosis and then an annual check in every year. Hey, how’s exercise going? How’s energy conservation going? These, that wouldn’t be too expensive for insurance. It would give you someone with training to help you in addition. Ideally, then you’d also have access to a patient support group with other patients and you have access to like everything that you need. That’s like if I ruled the world.
[00:53:05] Carrie:
This is what I love about you. Because we don’t have that kind of care system set up here. Like, our health care system here is great. But we don’t have team care here. Like, I’ve got a dermatologist and I’ve got a neurologist when I need them. And I’ve got dentist, and that’s it. I’ve never — I have done PT here, but I was never assigned a physical therapist, and I’ve actually had really negative experiences in Taiwan, like literally walking into an office and my PT was looking up ankylosing spondylitis on Wikipedia, which does not give you —
[00:53:43] Cheryl:
And I hate, unfortunately, yeah, I hate to say that does happen in the US, too. Not only is there lack of a real focus on inflammatory arthritis in the academic programs, at least that I’ve been part of, unfortunately. There are, there is, it’s a very fractured system, so it’s very rare for people to really truly work in an interdisciplinary clinic. There are more and more people doing that because it is considered like a best practice. But it is, right now, it’s like you have to go find the person, find a certified hand therapist, find a physical therapist, find your, and it’s just, it’s so much burden on the patient who’s already burdened by just the basic demands of their condition.
[00:54:31] Carrie:
I guess that’s our third best words of wisdom, find your tribe.
[00:54:35] Cheryl:
Yeah. Build your team. Yeah. I love that. Well, and also speaking of, I mentioned that OTs are kind of experts in like the life hacks and gadgets and that could be small or big ones. Can you share your favorite arthritis gadget or tool in your toolbox?
[00:54:57] Carrie:
Oh, gosh. I have many and, so many of them are called Cheryl because I’ve got those ideas from you here. Like, I didn’t know about those squeezy eyedropper things until I saw you mention it. I was like, what? What? Genius. This makes my life so much easier. My number one tool is actually my power wheelchair. And people might be like, oh, like what’s going on with the wheelchair kind of thing. But I actually have found that my step count is going up because I have this chair. And that’s because I’m using my power wheelchair to do the heavy load. Like, I can go and get my groceries in my power wheelchair.
Or I can go and I never expected to have the simple pleasure of being able to go and pick up my own Shopee package or my own mail without having to worry about what the payback was going to be like the following day if my joints were really swollen. So, having that chair has been a godsend. And it’s art funded!
[00:56:08] Cheryl:
Wow! Your own art.
[00:56:10] Carrie:
Last year. Yeah. So, I created all of these collages and just said, buy a collage and I’m putting it towards my power wheelchair. Anything that you see in my shop, this is what I’m going to be buying my power wheelchair with. And I ended up getting a RoeBooter X40. It is portable, folding, Android wheelchair.
[00:56:34] Cheryl:
Oh, my gosh. Okay. So, for people listening who don’t know, so when you think typically, the average person who thinks about what a wheelchair looks like is typically thinking about a, what we call manual wheelchair, which is one that you propel with your hands on the side. And the typically power wheelchairs are ones that are electronically operated, you have like a joystick or do you have a joystick? Yeah.
[00:56:57] Carrie:
I think I’ve sent you photos with me in both of them. I’ve been using a manual wheelchair since 2009 and I have traveled internationally with a manual wheelchair. But the power wheelchair is it’s got a joystick and you, it’s so cool. Like, you just press, and then you let go when you want to stop. It turns on a radius. It folds and expands with the press of a button. my husband can pop it in the back of our car. It’s very futuristic looking.
[00:57:28] Cheryl:
I didn’t even know, and this is me being a bad OT, I did not even know there were collapsible or foldable power wheelchairs, like, but, certainly it’s not my area of specialty. But typically, the, well, the ones that, because they can be used for different things. Like, if the person’s fully typically in like spinal cord rehab, a power wheelchairs for somebody who has no motor abilities or sensation below like the level of like their upper chest or neck. So, typically they need the really huge ones with like lots of trunk supports. So, because you are an ambulatory wheelchair user, you are able to get a slightly lower profile one, which is awesome. But I think that’s such a brilliant point to make that you would never think. You’re, if you’re an ambulatory, which is a fancy word for walking, you can walk, you’re an ambulatory wheelchair user, you never think that having a power chair, which is considered like the more heavy duty chair, would actually result in more walking, but you —
[00:58:30] Carrie:
I was shocked. I was so shocked. I kept looking at my step count going, oh, my gosh, and I’m not stressing about my step count. Like, if you had met me before the chair, as I was moving up to making this purchase, like all I was consumed with was, am I getting, am I moving enough to like, keep my blood from clotting, first of all, and how much damage am I doing to my joints? And if I’m walking for more than 10 minutes or standing for more than 10 minutes, I’m in agony. How much is this going to affect me the next day? It’s going to affect me a lot. So, in that power wheelchair, like, plus there’s nothing like having like the wind flowing through your hair when you’re rolling down the street.
[00:59:13] Cheryl:
Just, yeah. It’s awesome. No, I’ll never forget the first time I was out with my son when he was like two or three years old. He was deeply in his ‘cars and trucks and things that go’ era. And we were at gas works park in Seattle and he saw someone in a power wheelchair and he immediately honed in on the joystick. Cause he’s like, that’s the control mechanism. And he’s like, mom, why do we not have one of these? It’s like, what are we doing? Why are you pushing me in a stroller? I could be sitting in this. You could be sitting in this. We could all be sitting in these. Like, it was just such a fresh — a lot of times people are like, “Oh, a wheelchair would be like the most depressing thing ever.” And it’s like, I love seeing it through a child’s eyes where it’s like, “Oh, this is awesome.”
[01:00:03] Carrie:
It’s amazing. And like for us, like we live in a, really nice neighborhood, but like if I had to walk like two or three blocks to get to a restaurant, I could do it, but then I’d have maybe 90 minutes at the restaurant and I’d be in pain within 30 minutes of leaving the house because I’ve been on my feet. But now I can roll up to the restaurants and roll back and I can get my walking in for pleasure. We have a park right across the street that I can walk around really easily. I’m not going over that time where the pain really starts to hit my back and my hips and my legs and my feet. So, yeah, t’s been a game changer. My cage has gotten a little bigger. I love having it.
I’ve had the opportunity to try all different kinds of mobility aids, including a robotic exoskeleton. That was also a really cool experience. It was Canadian technology. It wasn’t a right fit for me. Here’s my plug, for anybody who’s listening. If you’re thinking about getting a mobility aid, some aides aren’t going to fit you the way you expect them to. It’s really important to test them out and try them out. An exoskeleton sounded cool to me, but it was not the right fit for what I needed for daily use, but it could be a right fit for somebody else. So, there’s no harm to trying different things. And if you decide it’s not for you, then that’s okay. Cause something’s going to come along. Something really cool came along in my life.
[01:01:33] Cheryl:
Yeah, I love that you funded it yourself, too. That’s so cool. It’s so funny. I told you before I started recording my dog, he honestly always just like lays on the bed. But I think it’s because we’re recording with a slightly different time than usual he’s been moving around a little bit in the background. Just funny.
[01:01:50] Carrie:
I’m trying to go to bed.
[01:01:51] Cheryl:
I know. He’s like, mom? Even though I have a bed in the office. This is one of my pacing or energy conservation tools is the office bed that he doubles as — yes, but yeah, also I take little 20-minute power naps in that bed, or, and Teddy takes hours long, Teddy the dog takes hours long power naps. And I asked beforehand, I told you that one of my questions I usually ask is like, do you have a favorite book or movie or show you’ve watched recently? And I liked your answer. Do you want to share?
[01:02:23] Carrie:
Okay, so I plugged the My Several Worlds book, ‘My Several Worlds’ by Pearl S. Buck, if you’re interested in Chinese culture. I read a lot, like I’m a nerd. So, I’m an, I’m averaging 100 to 150 books a year. I just finished Blake Crouch’s ‘Run’, which was his first novel. I loved — I don’t know if you know who Blake Crouch is. His Recursion, Dark Matter. Maybe you’ve seen the show on TV.
[01:02:54] Cheryl:
I read a lot of young adults. I’m a 43-year-old teenager.
[01:02:59] Carrie:
I like young adult too, but it’s got to be like dystopian young adults who are —
[01:03:03] Cheryl:
Oh, okay. Yeah.
[01:03:06] Carrie:
So, yeah, the only other book I could give a plug to is my coloring book. I published a coloring book for spoonies.
[01:03:14] Cheryl:
I love it. Do you know, there’s only one other coloring book for Spoonies I know of, and there probably are a lot of them. But do you, speaking of authors and books, do you ever read Jenny, The Bloggess, Jenny Lawson, she is incredible.
[01:03:34] Carrie:
She’s got her own shelf on my bookshelf back here.
[01:03:36] Cheryl:
Oh, my gosh. Yeah, she’s had so much. She’s had ‘Let’s Pretend This Never Happened’, ‘The Mostly True Memoir’. And she has, ‘Broken in the best way’. Yeah. Epic rant about insurance companies in there, but I thought she has a coloring book too, or is it just her — is it just on her Substack?
[01:03:54] Carrie:
I have it. It’s a book slash journal and coloring book. It’s called ‘You Are Here’.
[01:04:03] Cheryl:
Okay, I’m putting this in the show notes.
[01:04:04] Carrie:
I don’t do a lot of YouTube stuff, but I did take a video of that book after I completed it and thanked her. And I’ve actually taken part in her mail program, too, because I’ve been onto her stuff for a long time. I’m still randomly getting Bloggess mail from people.
[01:04:20] Cheryl:
Wow. No, I’m obsessed with her and I know she like wouldn’t want to ever come on the podcast because she says she doesn’t like to do those kinds of things necessarily. But she’s a dream guest of mine. As well as you. So, we’re fulfilling dreams today, but yeah, that’s awesome. Oh, that’s so great. I love those.
[01:04:37] Carrie:
It’s so great when authors write about, are open with, their health problems. Like Lisa See is featured on the essays, ‘Spondylitis Plus’. And I love Lisa See, too. Like, ‘The Tea Girl of Hummingbird Lane’, ‘The Island of the Sea Women’, ‘Snowflower and the Secret Fan’. Yeah. So many good ones.
[01:05:04] Cheryl:
Hey, thank you. Sorry. I’m gonna keep going while I let the dog out. I think he hears my husband and my son out there. He wants to go out there. Yeah, I know. I love, I’m a bookworm as well. And so, I love different, I go through different phases. Like I’ll either read like memoirs or like easy reads or super in-depth, like, ‘All the Light We Cannot See’. You’re like, I’m like, I cannot read another World War II, but then I’m like, but here I am reading something else about World War II and depressing myself. But they’re so good.
[01:05:35] Carrie:
I was just looking at another one today and I’m like, I’ve read enough of that.
[01:05:39] Cheryl:
I know. I’m not going to. Nope, I’m going to do the best thriller. Did you read ‘Remarkably Bright Creatures’? I love that one. That has a lot — so, I’m in the Pacific Northwest. So, that’s based in like a fictional town in Washington state. But it’s kind of similar to where my husband grew up in port towns and areas from how they describe it. I really, I loved that book. Okay. Anyway. Yeah, so good. So, good.
[01:06:09] Carrie:
Now we’re on books.
[01:06:10] Cheryl:
I know. I know. Actually, honestly, I have always like jillions of ideas and one of them is like, I really am interested in like the disability representation in media in general, but like especially books and TV and movies, which I guess is media, but — and social media, okay, everywhere. So, like I do read a lot of like books with starring or written by people with different health conditions and disabilities. And so, yeah, I think that would be a, that would be a cool little spinoff podcast. Yeah, wouldn’t it? Okay. Last one, totally different note. What does it mean to you to live a good life and thrive with rheumatic disease?
[01:06:54] Carrie:
So, this one, I wasn’t sure how to answer it. I’m going to answer it short and sweet. Keep on going. There are always better treatments coming. There are always new things on the horizon. There are ways to figure out how to do things that make your life a little bit easier. Don’t be afraid to try something that’s going to make your life easier or more manageable. And that’s what I’m always, that’s what I’m always looking for. Not the easy way, but just something that gives me a little bit more quality of life. And a good life well lived, as I said earlier, is when life hands you lemons, create or write about it. And that is what’s really helping me thrive with it. It really is that I can create.
[01:07:43] Cheryl:
That’s beautiful. That’s exactly what I mean by that question. I think we haven’t used the word acceptance yet in this podcast episode, which is rare because usually we talk about acceptance earlier. But I think, well, at the meta level, like listening to your story and knowing you, there is this thread of like accepting, like, this is what my body is able to do right now. What can I still do that’s meaningful and valuable to me? And how can I orient myself to this life, the life that I have that wasn’t the one I expected when I was an active, teen and everything. And we have to give ourselves space to grieve and mourn the things that we lost, but also, lean into what we still can do. So, that’s my, soapbox.
[01:08:28] Carrie:
Yeah, I think that’s great. And also, with acceptance too, like I think a lot of patients really need to remember those goalposts are always changing with illness. Your illness is always changing and everything. So, when your goalposts are changing, sometimes you’re going through those cycles a lot. And I find I’m moving through acceptance more and more often as I get, unfortunately, as I get sicker and sicker. I hope it’s not going to be that way in 2025. But I am finding ways to move through that and to empower myself when it happens.
[01:09:04] Cheryl:
Yeah. And yeah, that’s a great point. There’s kinda seasons of life where you accept in different ways to. And when I use acceptance, it is like taking what life is offering you at the present moment, not saying that it will be the same forever or change. Just being present, which is one of the hardest things for me.
[01:09:25] Carrie:
It’s just, what can I do today?
[01:09:26] Cheryl:
Yes. Yes. What can I do today with my one wild and precious life?
[01:09:32] Carrie:
Nice, well said.
[01:09:34] Cheryl:
Yes. Yay. So, I’m going to have all these links in the show notes, but if, in case someone wants to find you right now, where can they find you online?
[01:09:47] Carrie:
Oh, gosh. I’m everywhere online. You can find me primarily at myseveralworlds.com. Or you can, if you want to visit my portfolio or business website, I’m at carriekellenberger.com. And all my social media is either under My Several Worlds or Carrie Kellenberger. Or the old school Travel Carrie is under Globetrotter, like on Twitter. That’s right. Can’t call it X. It’s still Twitter to me.
[01:10:14] Cheryl:
No, it’s still Twitter.
[01:10:16] Carrie:
I’m Globetrotter there.
[01:10:17] Cheryl:
Yeah, that’s right. Okay. That’s wonderful. Well, thank you so much. This has been really great. And we, I know we have very different time zones, so thank you for being flexible with the time. And I’m waving to you from Seattle. I don’t even know what direction west is. There we go. And hopefully I’ll come visit you someday. Oh, another project I have is, idea is, Arthritis World Tour. Where it’s a very detailed, thought out idea where I literally just travel the world, visiting interesting people with arthritis, and make some sort of video. Yeah. Wouldn’t that be fun? So.
[01:10:52] Carrie:
Yeah. I’ll spare a room for you. No problem.
[01:10:56] Cheryl:
Perfect. Coming to Taiwan. Okay. Follow up with you later about that. But thank you for now. Talk to you later.
[01:11:02] Carrie:
Take care.
[01:11:03] Cheryl:
You too. Bye!
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