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Patient Stories, Podcast

Rheumatoid Arthritis at age 30 versus 40: Cheryl’s Story (Episode 77, Arthritis Life Podcast)

August 6, 2022
55 min read
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Summary:

In this episode, host and Arthritis Life founder Cheryl compares how rheumatoid arthritis affected her in her twenties to her thirties. 

Cheryl reflects on a blog post she wrote at age thirty called: “Ten Years with Rheumatoid Arthritis: What’s the Impact?” This includes a deep dive into the physical effects of rheumatoid arthritis, effects on my daily routines, as well as finances, social and emotional life, school, career, hobbies, travel and overall life philosophy.  

She shares how pregnancy and parenting changed her disease progression, and details how she coped with additional health issues and injuries in her thirties along with adjusting to her new role as a mother.

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Medical disclaimer: 

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

Episode Sponsors

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

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. 

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Speaker Bios:

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
  • Cheryl’s Arthritis Life Pages:

Full episode transcript:

Transcription of Episode with Speaker 1 (Cheryl Crow)

Cheryl:

Hello there! This is Cheryl, the host of The Arthritis Life podcast. Today is going to be a little different. On most of my episodes, I have a guest that I’m interviewing and chatting back and forth with. And today is actually going to be my first solo episode in a while. I did a lot of solo episodes early on. 

But anyway, I’m recording this in July of 2022. And the reason I’m doing this episode is that I have been in a very nostalgic mood recently. This just happens to me a lot. I know I had John Hodgman, this comedian and podcast host of Judge John Hodgman, he used to always say, “Nostalgia is a toxic impulse.” I think he meant by that, that, you know, we shouldn’t live in the past. 

But I think, for me, having a chronic illness and getting questions — I get questions a lot from people with rheumatoid arthritis and similar conditions who say, you know, “What did you do? You were diagnosed when you were 20. You know, what was it like being younger? What was it like deciding to have a baby? What was it like? What were all these things like?” 

So, today, I am going to talk a little bit about my earlier journey with rheumatoid arthritis through the lens of me now. 

So, what sparked this — let’s have like, five disclaimers before — is that I recently rediscovered one of my most popular blog posts on my original blog, which is called theenthusiasticlife.com, it was just a straight up blog; no videos and stuff like that. Just me writing about whatever I wanted to write about. It was — the tagline was ‘Living life to the fullest despite chronic illness. Life hacks and musings on arthritis, parenting, occupational therapy, developmental disabilities and more.’ 

I started that in 2010, I believe, and I wrote in 2013, July 2013, another nostalgic time, I wrote, ‘10 Years with Rheumatoid Arthritis: What’s the Impact?’ And so, this has been shared a lot because I talk about what it was like for my first 10 years living with rheumatoid arthritis, the impact of it, not just like, “Oh, yes, rheumatoid arthritis involves joint pain and fatigue,” but how it actually affected my life. 

And I think that seems to have resonated with people. And I think, right now, today, what I’m going to do is — I have not actually reread this blog post in a really long time. And so, I thought it would be kind of interesting to blind react to it. 

Now, if you don’t know what blind react means, it means like, usually, it’s a video or someone hasn’t seen something, and they quote-unquote ‘blind react’, meaning this is my actual legitimate reaction. And sometimes it’s something really cute, like, you know, a kitten falls into someone’s bed or something, or it’s something scary. But in this case, it’s going to be just me giving my genuine reactions to some of the things that I wrote and through, again, through what I understand now. 

So, I hope that this is interesting to you. I’m going to find it personally interesting, obviously. So, it also honestly helped jog my memory because sometimes it’s hard for me to remember the answers to some of the questions people asked me about what it was like earlier on.

 So, just as a life context, for those who haven’t like, listened to my long life story again, one last thing before I start reading, is that I was diagnosed at age 20 in 2003. I then did some traveling and worked for non-profits in the Seattle area, and Rochester, New York, and then I also worked for the University of Washington Medical Centre, and then I decided to go to occupational therapy school. I did that from 2010 to 2012 in California, Oakland at Samuel Merritt University, and that’s where I moved there with my boyfriend at the time, who became my fiancée, who became my husband in 2012. 

And so, in May of 2013, we conceived our child, Charlie, who we had in February 2014. So, what this is a really — to me — a really interesting point in time because at this point, I do know that I’m pregnant. I don’t think I talked about it in the blog post but, you know, a lot of things changed for me after having Charlie. And there are absolutely zero regrets whatsoever, but it just so happens that the, you know, the postpartum period for my rheumatoid arthritis got really bad. 

And also, in 2016, I had three unrelated injuries and/or additional health issues that really had a severe impact on my quality of life and my ability to function and work, and so my life became a lot — my condition became a lot harder. My life became a lot harder in many ways. But obviously, being a mom, it’s counterbalanced by the fulfillment of having a child. But anyway, so this is an interesting point in time for me to look back on.

So, again, the blog post is called ‘10 Years with Rheumatoid Arthritis: What’s the Impact?’, written in July 2013. So, I’m going to read — I did this before with an episode with Joel, where he read out loud on the podcast a blog post he had written, but I’m going to read out loud this blog post and I’m going to try to make it — it’s a little clunky. I’m going to try to make it as clear as possible. Like, this is me reading what I wrote in 2013. I wish I could — maybe I should like have someone else read it so you can tell like a different voice but oh, well. I’m just gonna do it this way because it’s more efficient. And then I’ll be like, okay, starting 2013 me. Okay, now this is 2022 me telling you what I think now.

 So. Okay, so, this is me in 2013: 

“I recently realized I have lived with rheumatoid arthritis (RA) for 10 years, or roughly 1/3 of my life! In that time, I’ve graduated college, traveled to 12 different countries, lived in 3 states, traveled to/through over 15 states,” it was really a numbering phase here. “I started swing dancing, adopted two kittens, earned a master’s degree in occupational therapy, got married, bought a house, and more. I’ve also spent a considerable amount of time and money managing this chronic illness and mitigating its effects so I can live with the best quality of life possible. 

In honor of my diagnosis anniversary, I’d like to share how RA has and hasn’t affected my life over the last 10 years. Understandably, most people assume that joint inflammation and/or pain has the biggest impact on the life of someone with RA. However, if I really look at how my life has changed due to my diagnosis, the impact extends far beyond the physical.” 

Okay, I’m going to stop. Now this is me in 2022. I have like, the desire to comment on every single sentence but this is what’s really interesting is I can totally see the seeds of Arthritis Life were sown way back then because that’s one of like, my common soapboxes or rallying cries or just pieces of education, you know, public — I consider what I’m doing public health education. 

And in many ways, when people hear public health they think, you know, epidemiology and like, you know, getting vaccines and stuff like that, which is super important. But in my case, I’m also thinking about it in terms of educating the public on — and the people with arthritis — on the tools to manage it and the mental health, you know, coping strategies. 

So, anyway, I think that that’s really interesting that even in this blog post, I’m kind of saying, “Hey, this is really important.” Like, that probably is what I think sparked me to write this, to say, okay, this is what, you know, this is very much an occupational therapy, you know, way of looking at things. It’s the self in the context of the world and in the environment, the self and the context of the environment and the demands on you as a human being, not just as like a collection of cells. Okay, so back to the 2013. This is what I wrote in 2013: 

“Using the Occupational Therapy Practice Framework as a general guide, I’ve created a handy pie chart which shows the seven areas of my life that have been most affected by RA I will explore each in detail below starting with the top right.” 

Physical Effects of Rheumatoid Arthritis

So, the top right is Number One, physical effects of RA. “For those who don’t know, RA is an autoimmune disease. In RA, your immune system mistakenly attacks the lining of your joints, which has a cascade of effects beyond joint inflammation (‘arthritis’), pain, and degradation. Although arthritis is in the name, because joint inflammation is a main effect, RA is in fact far more similar to lupus than osteoarthritis, which is caused by joint cartilage breakdown over time. RA has a systemic effect on other organs — or RA has systemic effects on other organs such as the heart, lungs, and vascular system, explored in detail the link above and here. 

So, what has that actually meant in my life? Well, my pain, my levels of pain, inflammation, and fatigue have varied vastly over the last 10 years. I’ve had times — I’ve had years at a time with absolutely no symptoms (‘medicated remission’), but I’ve also had a couple of flare-ups where pain and inflammation have increased to the point that I have to change my medication regimen and how I approach tasks. 

“On the average day, I feel adult ache in my ‘distal’ joints (farthest away from the core — think fingers and toes, not shoulders and hips), which is slightly worse in the morning and at night. I intermittently have cricoarytenoid arthritis, or inflammation of a small joint in the throat, which results in dyspnea. Dyspnea means difficulty breathing or an ‘unpleasant awareness of the work of breathing’. Overall, I’ve been very fortunate to respond well to my medication regimen which has kept my inflammation at bay. Despite my mild level of daily joint inflammation, I experienced many systemic effects of effects of RA including chronic eye inflammation, gum inflammation (leading to hefty dental bills), non-iron responsive anemia, occasional fatigue, and some gastrointestinal symptoms that may or may not be related to RA depending on whom you ask. The gastrointestinal issues led me to adopt a nightshade and gluten free diet.

I also experienced medication side effects including increased risk of infection (which means I must be very careful to wash my hands and practice other infection control measures),” that was all in parentheses, “Plus digestive issues and fatigue. In summary, while I’m lucky to respond — very lucky to respond well to medication, my life has been affected by the direct and systemic effects of this disease, and medication side effects. 

The hardest part for me is not managing my physical symptoms, but rather the unknown. If I’m currently in mild pain next week, will I have a huge flare up? Or will I be in medicated remission for the next 10 years? No one can answer that which makes life planning difficult. Then again, we all ultimately don’t possess answers regarding our physical future, but more on that later.” Okay. And that was the end of first part for 2013 me. 

Yeah, that’s — I also find it interesting that I already understood that the unknown was the hardest part for me, because I feel like I rediscovered that when I went to therapy, finally, in 2015 and really confronted some of my anxiety issues and how they related to coping with chronic illness and how — anyway, how I think especially thinking about, you know, the unknowns with having a baby and, again, knowing that I was pregnant when I wrote this, I think that was well on my mind, you know. How is my pregnancy going to be? How is my life going to be, you know, transformed through having a child? And how is that going to affect my rheumatoid arthritis? So, that’s really — that’s really interesting. 

Daily Routine: How is it affected by Rheumatoid Arthritis?

Okay, and now this is fun, this is, really, you can see the occupational therapist in me. So, this is me back in 2013 talking about Number Two, the Number Two way that rheumatoid arthritis affects my life. So, here it goes. 

“Number Two: Daily routine – The Why, and the How. My physicians prefer my RA to be controlled 100% through medication, which would allow me to live a completely quote-unquote ‘normal life’ without making any modifications. 

However, as an occupational therapist, I prefer to tweak my daily activities so as to minimize stress on my joints. The way I see it, my joint inflammation at any given moment of time is partly a response — partly a result of my immune system attacking my joints, and partly a result of the additional stress I put on them as I engage in daily tasks. Medication addresses the former cause of inflammation, but not the latter. I can control the way I approach daily activities, so I owe it to myself and my long term joint health to do so. Joint protection has become a part of my daily routine at almost a subconscious level. Here are just a few of the ways I approach activities differently to prevent further joint damage.” 

Sorry, this is 2022 me interjecting. By the way, there’s some really cute pictures in here. I do always think when I look back, I think, oh, my gosh, I look so much healthier back then. Because my face was like, a little bit fuller, and I just, my skin looks healthier. And, you know, maybe it’s just, I was also younger, and this was only 10 years ago, but it’s interesting. Yeah. 

And then, one of the pictures it’s me at a cat cafe in Japan, which was like heavenly. But I’m saying — I’m wearing my glasses — and it says, ‘I wear glasses due to eye inflammation’ because I can’t get LASIK due to how dry my eyes are. I’m not a candidate for LASIK and because my eyes are so dry I can’t wear contacts for very long. I’ve worn them just for like, weddings and stuff. Okay, back to 2013 me. 

“Dressing: I take my RA into account when selecting clothing. Typically, I avoid shirts with lots of tiny buttons as they involve lots of repetitive motions on the small hand joints. I also am extremely selective with my footwear with the dual goals of minimizing stress on my foot joints and making the shoes easy to put on and take off (see my previous post on RA-friendly shoes where you will discover my obsession with Danskos!).”  That’s a brand. 

“Cooking: A few simple kitchen modifications I’ve employed include using an electric can opener rather than manual, using a smaller Brita water pitcher rather than a large/heavy one, purchasing very good and sharp knives to minimize the amount of force I must use to cut things, using an electronic food processor and Kitchen Aid rather than manually stirring food, using mass movements (shoulder/elbow/trunk) to open items rather than relying on small hand wrist joints whenever possible, and asking for help with lifting large and heavy items. When I’m lifting any object in the kitchen I follow the basic rules of joint protection,” hyperlink to an article about it. 

“Computer and phone use: I take frequent stretch breaks at the computer and always use a mouse rather than a trackpad.” 

2022 me interjecting, I still do that. I still definitely like using a mouse, I really can’t use a trackpad for more than like five or six minutes without having pain in my knuckles. Okay, back to 2013. 

“Mousing puts less stress on my MCP joints (knuckles) than using the trackpad and the MCP joints tend to be the most affected by long-term rheumatoid arthritis. I’ve also started using a talk-to-text program when I’m not in public such as Siri. I find it’s much easier to dictate a short message this way. Plus, it’s much faster than trying to finagle with a small keyboard on the iPhone.” 

Okay, so that’s the end of 2013 me, for ‘Part Two: Daily Routine’. So, this is also, again, from the Arthritis Life perspective now. You know, I have noticed through being on social media more that people really love these kinds of daily living adaptations and I just put them under the category of, you know, quote-unquote ‘life hacks’. But really, in the, in the wording of occupational therapy, we consider them adaptations to your daily routines. So, it’s fun to see some of the stuff I talk about on a much bigger, you know, with a bigger audience now are the things I was still talking about back then. 

So, okay, now let’s go back to 2013, part three of how rheumatoid arthritis affects my life. Oh sorry, this chart says ‘Effects of rheumatoid arthritis on my life: 2003 to 2013’. This is like I’m looking at myself like a scientist, you know. I’m like, this is my data report. And you can definitely see the anthropologist in me. I majored, or double majored in anthropology and psychology at Vassar. I ended up minoring in anthropology at the end just because of some course conflicts, but you can definitely see the cultural anthropologist; I’m looking at myself like an anthropologist. Okay. 

Financial Ways Rheumatoid Arthritis Affects my Life

Part Three, 2013: “Financial and Health Management Adventures with Rheumatoid Arthritis,” I’m using the word adventure very, very interestingly. Okay, that’s me in 2022. So, in 2013, I said, “Health management and financial costs affect everyone with chronic illness regardless of whether one is experiencing symptoms at the moment.” Preach. 

“I’m sharing these costs (financial and time burdens) not to complain but just to paint a realistic picture of what managing this disease entails. RA appears to cost me 26.8 to 74 hours of time per year, and $2,800 to $8,000 per year depending on my insurance. Note, the financial costs are just directly what I pay. My insurance company is paying over $20,000 a year for Enbrel or Remicade alone.” 

So, that’s important because the price — this is me in 2022 — the price of the medications is not what I pay, right, because I have insurance. This is in the United States. So, this is me in 2022, I’m going to just explain this chart. It’s a visual chart. I will include, of course, a link to this post when I published this episode so you’ll be able to see all these but, you know, my categories are appointments, prescriptions, and insurance, and then that’s the Y-axis; and the X-axis is time costs and money costs. 

So, for example, my appointments, including getting there and making the appointment is like 50 to 150 minutes every three months. My prescriptions, you know, making and getting to my prescriptions — getting them on the phone with insurance, and also physically going when I was on Remicade, I had to go to the office and get the infusion for, you know, five hours every six to eight weeks.

So, I talked about the total numbers, like maximum 390 minutes every six weeks. And so, I did all the math. And so, the money, you know, is including the co-pays, the parking or bus fares. Depending on where I was living at the time, I either drove, or took the bus, or took the BART (Bay Area Rapid Transit) when I was living in the Bay Area. And then, the prescriptions, you know, co-pays, monthly premiums for insurance. So, it’s a lot. 

And I unfortunately, you know, looking at this nine years later, you know, these costs have only gone up in the United States. So, that’s a huge burden, even if you’re in, again, medicated remission, you’re still having to deal with obtaining your medications and the barriers that insurance sometimes puts between you and your medication. So, that’s definitely still relevant. 

I’ve been very lucky, you know, nine years later, to give like a brief update, you know, because my husband has always worked for companies that have really great health insurance ever since we’ve been married. It’s been — I haven’t had a lot of denials or anything like that. But that’s very rare. Almost everyone I talked to has had to deal with a bunch of insurance barriers. 

Social and Emotional Effects of Rheumatoid Arthritis

Okay, so the next topic is, “Number Four: Ways that Rheumatoid Arthritis Affected My Life between 2003 and 2013, Social & Emotional Effects.” So, this is so funny, because this is exactly almost like the same framework that I’m using in my Rheum to THRIVE program, like addressing all the different ways that rheumatoid arthritis affects your life. 

So, this is me in 2003 — ah, 2013. So, this is something people do ask me about a lot. “As marriage became more of a real prospect in my mid to late 20s, I found that anyone entering into a romantic relationship with me would consider the potential lifelong effects of the disease. My impression is that the disease itself was seen as a negative, but the way I managed it was seen as a positive. 

I also think I self-selected partners who share my view, which is that you never know what physical or mental condition someone might develop when you make that lifelong commitment. We all know we could be hit by a car tomorrow and our whole lives could change, so putting extra stock in the physical when making romantic relationship decisions is unwise.” 

Okay, I’m gonna stop. This is me in 2022. What I think is interesting is someone pointed out to me that, I didn’t even notice this, that like, almost all of my exes in 2000s, like ex-boyfriends, were like engineers. And it’s not — I don’t even honestly even — and Gabe is an Electrical Engineer, I understand what he does a bit. But like, I literally don’t even understand exactly what engineering is, but I do know that there’s a little bit of a mindset with engineers who can be, they can be very, you know, logical. 

And I can see like, even though I am a very passionate person that’s very loving and effusive and enthusiastic, I also do have the side of me that’s very logical. And so, I can see how that like, that works. Like, I had a very, very practical viewpoint on this. So, I think that might have been, again, I self-selected partners, who would be practical as well. Okay. So, there’s a lot more to say on that. 

But I do try to be, you know, careful about other people’s, like, exes and stuff, you know, privacy because most people including my husband, most people I’ve been with, including my husband are a lot more private than I am. So, I try not to like, air everyone’s stories and stuff. But I do share stories, plus because they’re my stories too, so, we’ll see. Okay, so now it’s back in 2013. 

“So, that being said, when you enter into marriage after having experienced health issues, the phrase ‘in sickness and health’ certainly carries more weight. In fact, the only time I became tearful during my wedding ceremony was when I was saying those words!” I remember that. 

“Regarding family and friend relationships, I’ve had wonderful support from both groups. The only small point of friction has been when I have felt peer pressure to stay up late, overexert myself, and not give my body the rest it needs.” 

The rest it means, like sleep. “My peer group largely has subscribed to the ‘I’ll sleep when I’m dead’ approach which simply doesn’t work for me (or most people with autoimmune diseases). My body starts shutting down —” [alarm rings] “— My body starts shutting down when I get less than eight hours consistently a night. I’ve learned to be assertive with this and deal with ‘FOMO’ or ‘fear of missing out’. 

On the positive side, RA has paved the way to for me to make some additional friendships and relationships. I’ve met other patients through the Arthritis Foundation at a summer camp in the Northwest as well as other volunteer and advocacy adventures. I’ve also met some amazing folks through social media and blogs such as RA Chicks, RA Warrior, Creaky Joints, and the RA Guy. Lastly, I’ve made connections through Tumblr with some inspirational people through Arthritis Humor.” 

This is me in 2022. That’s — I keep forgetting that I made a Tumblr blog called Arthritis Humor. I need to like, remember how Tumblr works. Wow, totally forgot about that. But other reaction, blind reaction, here is, you know, I had actually forgotten that I had already made connections through social media in 2013 because it really exploded, you know, in the 10 years since like, I would say, in the following 10 years, and especially since 2020 with the pandemic, I just feel so, so grateful for the other chronic illness, you know, advocates and friends that I’ve  made along the way, many of whom you’ve already heard on this podcast, so. 

And yeah, the needing to assert your need for sleep is like perfect timing because I just made an Instagram real and Tik Tok about this yesterday that really seemed to resonate with people on Instagram, which was, you know, sleep is a medical need, like a legitimate medical need, just like food and water. So, you know, you don’t have to apologize for needing to sleep. 

But it can still, even if you feel confident in asserting your need for sleep, it can be still hard to actually cope with the fear of missing out, or just, not just the fear of missing out, the reality of missing out. Which is like, yeah, I know I need to sleep and I’m okay with that. But if I have to leave like a wedding early or miss out on something, it’s still really hard to cope with. So, you know, that’s just my thoughts on that at the moment. 

And I’d also find it interesting that I lumped social and emotional together. I mean, that is common in some ways. People say, you know, ‘social-emotional challenges’, but I mean, emotions are their own huge topic, like separate to the social, but overlapping.

So, here’s 2013 me, how I’m explaining the emotional side more: “So emotionally, the hardest times have been when I’ve had unexplained symptoms,” that’s still the same now in 2022. “This happened the full two years before I got diagnosed, and has reoccurred a few times since then. As somebody who prides herself in the ability to get to the heart of the matter, I found it frustrating when I can’t figure out what is causing a particular symptom and how or when it will go away.” 

So, 2022 me, a hundred percent. I think the unexplained symptoms or just the unknown overall and uncertainty are still the hardest. 

So, back in 2013, I wrote, “I have also felt anxiety about the future, due to not knowing how RA will affect important life roles that I hope to have, such as being a mother someday.” I’m laughing because I knew that I was pregnant, but you don’t know. At that point, I didn’t know if it was gonna actually result in a child because you just don’t know how the pregnancy is gonna go. 

But in 2013, I wrote, “Will I, like some woman with RA, go into complete remission during pregnancy, but then have a huge flare up after birth and barely be able to hold my own baby?” Spoiler alert. Yes, that is exactly what happened.

And then 2013, “Or will I go into lifelong remission after having a child like my great aunt did?” You know, she was very, very, you know, appreciative for that lifelong remission. Unfortunately, I didn’t experience that. She did have juvenile arthritis, which is more likely to go into remission than adults’ rheumatoid arthritis. 

Okay, so 2013, I said, “The unknown, for me, is probably the very hardest aspect of this disease,” again, still true in 2022. “If I knew that I’d have X effect for life, I could habituate my mind and my approach to it. But unlike a situation such as a complete spinal cord injury, where the prognosis is pretty clear cut, autoimmune diseases have varying courses for each individual. The upside is that I have the potential to feel great in the future. But the downside is that I will always have to handle the unknown and lack of clarity about what is happening in my body.” 

Well, yeah, couldn’t have said it better, really, in 2022, that these are still things I struggle with. And I think one of the most helpful concepts I learned since 2013 is the concept of perpetual problems versus solvable problems, you know, and I think I still kind of held out some hope at this point that like, maybe I would figure out uncertainty or get more answers. 

But now, I’ve kind of understood that, uncertainty is inherently an unsolvable problem, or it’s a perpetual problem; it’s going to be there forever. It’s here in 2022, it’s going to be here in 2032, to 2042, you know, however long I live. So, learning to look that in the face and cope with it has been a much more productive strategy even though it was really hard to accept it first. 

Ways Rheumatoid Arthritis Affects my School and Career

Okay, so Number Five in these eight ways that rheumatoid arthritis affected my life from 2003 to 2013 is ‘School & Career with Rheumatoid Arthritis’. So, “During the first six years of my diagnosis, I explored some truly amazing careers including working in a private school for children with severe developmental disabilities, program development at an international photography and youth storytelling non-profit, and organizational development and training at a Top 10 academic medical center in Seattle.” 

And I’m bragging there, but I am very grateful for those places I got to work. “During that time, I did a ton of soul searching about what career would be the best fit for me long-term. And RA did play a role in my decision making. I decided I wanted a career where my primary purpose was directly helping people, individually or in small groups. The career had to be flexible enough that I could work in a variety of settings regardless of my potential joint inflammation. Occupational therapy emerged as a perfect fit due to the large scope of practice and variety of practice settings. It also has a lot of part-time work availability, which appealed to me as I’m hoping to work part-time when I have kids.” 

Okay, so now, 2022 me. Note that I am just completely assuming that I’m going to have multiple children at this point. And that’s definitely something people have been asking me a little bit more about. That, you know, it’s a very tender topic to discuss, you know, “Did you plan on having an only child? Was that your goal?” or, “Did you want to have more weren’t able to?”, or, “What was the reasoning behind that?” So, at this point, I still was like, very optimistic, like, yeah, we’re gonna have kids. Like, you know, my husband and I are both middle children of three, so to me, just the default family unit in my mind was multiple kids and siblings. So, I’ll talk a little bit more about that later.

Okay, so this is in 2013: “Additionally, OT is an intrinsically optimistic profession. We will rehabilitate or compensate for any physical or mental condition, so that our clients can ‘live life to its fullest’. OT’s want to maximize the amount of function one can achieve, despite any illness or injury. And that philosophy appealed to me as it’s very inclusive of diagnoses such as RA. 

As an OT, I experienced occasional pain from handwriting. However, my vast experience with the health system and my own journey as a patient generally have had a positive effect on my school and career.

One positive effect of my diagnosis on my career is that I can empathize with my clients’ interest in knowing ‘the answers’, and their frustration when they eventually discover that no one knows them. People can tell you what is most likely to happen, but no one in the health or education system is a fortune teller. I really identify with my clients’ and families’ frustrations over how difficult it is to make decisions off of what sometimes feels like incomplete information.” 

I bet a lot of you are identifying with that listening right now. It’s still true. “Once you understand how complex the human body is, it seems self-evident that no one can give you all the answers. But I vividly remember my experience of the healthcare system before I became a provider, and the profound disappointment I felt when I was confronted with this reality. I try to really acknowledge this aspect of my client’s experience and validate their concerns.” So, that’s the me in 2013 talking about that. 

So yeah, and I think, again, my internal optimism was pretty high at this point in terms of yeah, you know, I have rheumatoid arthritis, but it’s been mostly well controlled and mostly in remission. And, you know, I know I did specifically choose OT over physical therapy, because I knew that physical therapy is a much more physically demanding job. There aren’t as many possibilities of where you can work where you’re not as physically active. 

So, I kept it in mind, but I don’t think I really — I kind of thought oh, yeah, that’s a possibility, but not probable. But then it ended up that it did affect, you know, my condition did affect my body a lot more than I thought it would in the year, so from 2013 to 2022 right now. Okay, but there’s three left, so we’re on Number Six of ways that rheumatoid arthritis affected my life 2003 to 2013 from my blog posts that I wrote in 2013. 

How does rheumatoid arthritis affect my hobbies and travel?

So, “Hobbies and Travel with RA. My choice of hobbies has certainly been affected by my diagnosis. I used to run almost every day, starting in high school through to a couple years after my diagnosis, but I eventually decided to try forms of exercise that would be less strenuous on my joints like swing dancing. 

In my video, ‘Why I Dance’, I shared how dancing grew into a huge part of my social life. I have to be careful about certain moves, which cause strain on my small hand joints. But overall, I’m fortunate to be able to take part in this wonderful community despite RA. Swing dancing is a great example of how RA took something away from me, but I discovered something equally meaningful in its place. 

Do I miss running and soccer? Absolutely, especially on clear, beautiful Seattle days. On a purely physical basis, I prefer the endorphin release of soccer or running to swing. However, when I look at the whole package of the activity with the social and musical elements, the trade-off is without a doubt worth it. 

“Now onto travel. Yes, I have been to 14 countries since my diagnosis: Belize, Fiji, New Zealand, Japan. And India, Turkey, Czech Republic, Germany, Belgium, Netherlands, Ireland, England and Canada. Phew! The biggest effects of RA on my travelling are the prescription and health management aspects. 

My first international trip post-diagnosis was to Belize where I volunteered for a great organization called Cornerstone Foundation. I was only planning on staying for three weeks, but it ended up staying three months, which meant that I needed additional medicine. I was on Enbrel at the time, a twice weekly—” I don’t remember it was twice weekly, “— self-injection medicine which must stay refrigerated. My mom graciously helped me research how to ship it but found out that it is illegal to ship things in dry ice to Belize due to drug concerns. So, guess what our solution was?” 

And I’m going to say from 2022 perspective, obviously I realize the privilege that was involved in this solution. And so, 2013 me said, “My mom took advantage of low-ticket prices and decided to bring the medication to me — now that’s what I call customer service! The drama wasn’t over at that point, however. During my last two weeks in Belize, there was a strike by the electrical supplier to the entire region, so we had no electricity to run the refrigerator. Luckily, I was able to keep my medication cold, but it just goes to show some of the difficulty of traveling with RA. 

During my other travels, I sometimes had to simply skip a week or two of medication. I was lucky to not experience any adverse effects with this approach. I also had to get vacation authorization to pre-fill extra amounts of my medication for longer trips. Since I switched to Remicade, the infusion-based medication which is administered every six to eight weeks, the biggest travel concern has been coordinating my travel dates so they do not conflict with my medication schedule. 

For example, I had to get an infusion the week before my wedding, so I will be covered for the honeymoon. This has also affected my current travels to China as my husband is there on an extended business trip. Luckily, my infusion schedule overlaps with a few weddings I’ve always wanted to return home for anyway. 

Spending an extended time abroad would be anxiety-provoking for me from a medical standpoint, because I have found that errors and confusion are more likely each time you introduce a new provider into the mix. However, short trips for me have been manageable with some work upfront.” 

Yeah, and this is all kind of weird to talk about travel right now, because of — I’m recording this in 2022 where COVID is very much still active and, you know, influencing certainly my travel-related decisions. And my hobbies, you know, because I actually, like I was ready to return to swing dancing right around 2016. You know, I had tried in 2014 where my rheumatoid arthritis was really active. I did go out dancing a couple more times, really just more for the social element. 

But just to tell you how active I was in the dance community, I was teaching beginners swing dance classes, even through up to seven months pregnant. So, I was feeling really, really good. I did go into a remission during pregnancy 2013 to 2014. But postpartum it was really, really rough in every possible way, you know, mentally, physically, emotionally. 

So, I wasn’t as involved in the dancing community, and I was just ready to get back because I had switched medications in 2016. And then, I had these three major injuries/accidents/health conditions that occurred on top of my rheumatoid arthritis that really threw a wrench into my dancing, and on my whole life. 

And so, that was the pilonidal cyst in 2016 which had delayed wound healing, and I had to go to the wound clinic constantly. And then in October, right when the wound was almost ready to heal — it wasn’t all the way healed yet — I got in a really terrible car accident, which was not my fault, officially, according to lawyers. It was very obvious it wasn’t my fault. It was from an electrical company setting up their work improperly. And it resulted in a very, very freak accident, like literally no one at GEICO had ever even heard of this. There’s hardly any way this could happen. 

Again, it just was a freak thing, but it was very bad. And so, I had a concussion and whiplash in my neck, and actually whiplash in my jaw, which I didn’t even know you could get. So, that was number two. 

And then number three major thing was that in March of 2017, I got a really bad like norovirus, or some sort of stomach virus. I was throwing up a lot and that triggered my gastroparesis to come back. And I just, my entire GI system just shut down. 

And that’s when I had to go on medical leave. At the time I was working at the public schools a few days a week and teaching at Lake Washington Tech OT Assistant Program, and I really had to kind of slow down because I just was not capable of doing what I used to be able to do. I was just really weak and really impaired. And that really affects — and obviously, things like swing dancing and hobbies were just completely off the table. I was completely in survival mode and that led to my mental health declining quite a bit. And that’s when it eventually ended up going to more — I ended up having panic attacks and went to more of an anxiety specialist therapist.

I had previously seen an amazing therapist who was very, really, really spectacular, but she, with the anxiety issues, we got to like a plateau. And I think the most professional thing to do in any of those cases, you know, whether it’s in therapy or something, physical therapy, or counseling therapy, is to kind of say, “Okay, you know, I feel like we’re making progress in all the issues except for the anxiety and the panic attacks. And I’m going to — I’m really going to encourage you to see a specialist who –  that’s all they do all day long.” 

And so, I went to him, he’s a psychiatrist, and he put me through exposure therapy, which really, really helps. 

So, but long story short, you know, things like hobbies, travel, I mean, I think I still did a little bit, just I’m just very stubborn. So, I really didn’t want to let go of, you know, doing things with family things that were meaningful. But it was hard. Like, we almost — I almost had Gabe just leave me at home when we went to go see the eclipse, the solar, whatever it was, this eclipse in 2017 — solar lunar, I honestly don’t know. It was solar because it was in the middle of the day. And I had such — I just, I was so panicked about leaving home. Even though I didn’t feel great at home, I just didn’t want to be anywhere else. This was a little bit of agoraphobic — anyway, it wasn’t planning on talking about all this. 

But the point is that, you know, just to explain like, my life was definitely a lot more simple before, in terms of, you know, I was happy. Yes, I managed my rheumatoid arthritis, and kind of then went on my merry way and swing danced, and had, you know, like, a very rich and full social life. And I really was not operating in survival mode. 

I was very highly functioning and these health issues that, again, injuries and accidents that were on top of my rheumatoid arthritis, which was actually fairly well controlled at the time, really put a wrench in everything. 

And to relate that back to the question of having another baby, you know, at this point, we were trying to have another child. I’m very, again, both my husband I, we joke, we’re very stubborn and optimistic. And those two qualities will get you extremely far in life, they are so helpful in many contexts, but they also can be very harmful. Because if you’re stubborn, and if you make a goal for yourself, and you’re so stubborn, that you’re not going to give up on achieving that, you’re optimistic that everything’s gonna go well, it can blind you to the other possibilities. What if it doesn’t go well? You know, what if? This is basically — and this is all very long, and I don’t feel exactly like talking about the whole thing — but long story short, you know, I was getting into my upper 30s at this point. Let me do math.

So, it’s 2017, I was finally starting to feel better on 2018. So, at that point, I’m 37, closer to 38. 

And I had to kind of say, or I had to kind of really look in the face, like all the possibilities, and it came down to you know, if everything went perfectly according to plan, and my health continued to be, continued to get better, then I could have another baby. But I knew too well at that point to plan on that. There were too many possibilities of things not going well. 

And actually, one of the moms of the children I worked with, and I also was doing part time at the clinic that I used to work at the outpatient clinic in Bellevue, Washington, and she has an only child and she said, you know, she made a really, really good point. I was talking to everyone about this. I know that might sound inappropriate to the OT’s out there. But you know, you do become very close with some of these families. 

And she said, you know, “Don’t — you know, think about if your health gets worse again, whether from rheumatoid arthritis or something else, it’s not just going to affect your ability to parent the new baby, it’s going to affect your relationship with your existing child,” you know, and that was a really big factor. 

So, you know, all of this is to say things got a lot more complicated. And I’m still so grateful that I had all those fun, carefree times. I mean, like this is a normal thing for a lot of people, right, in their 40s. Like, look back and they’ll say –  this isn’t just a chronic illness thing. 

But you know, I’m extremely grateful. I know people right now in their 20s who didn’t get to traipse around the world, and swing dance, and be in remission. So, I always say how grateful I am for that, you know. 

So, looking back through my lens now, well, I think it’s — I’m proud of myself for being grateful at the time, but I probably did take it for granted a little bit too.

Okay, so now I’m going to — we’re concluding. I kept thinking earlier there were eight things, there’s actually seven. So, this is the last one, Number Seven of the ways that rheumatoid arthritis affected my life from 2003 to 2013: Philosophical Effects of RA. I’m such a nerd, sorry. 

Philosophical and Spiritual Effects of Rheumatoid Arthritis

Okay, so, “For years, I believed if I treated my body as a temple, I would reap the rewards of my efforts, I ate well, avoided recreational drugs, exercised vigorously daily, and as a result, I had a body that operated smoothly and efficiently. I ran a 5:30 mile, weightlifted five times a week, and never subbed out in my high school or college soccer games (clocking in at 90 minutes per game).” 

I really actually was unusually a lack-of-injuries person, like I never broke a bone, I never had to be — I think I twisted my ankle once. I did have a concussion one time in high school, that did take me out. I don’t think I remembered that in 2013. 

“But experiencing my body breakdown, in the absence of anything I was willfully doing felt like a double betrayal. It was a betrayal of myself BY myself (there wasn’t even an outside virus to blame!), and it was a betrayal of a philosophical system I didn’t even know I had, which is that I could protect my body from harm by doing the right things. I know now that my years of good health were partly a result of my actions, but also a result of good luck. My baseline state of good health enabled me to maximize my fitness and do great things, but I wasn’t in control of that original baseline state. 

In my gut, I suppose I knew I was lucky to be in good health. I had seen other athletes fall victim to injuries and seen friends or family fall ill to various diseases through no fault of their own. There is a transition period, however, between knowing your body is not invincible and accepting it. 

So, who or what is to blame when the body betrays the body? In my own belief system, there was no God or greater power or force to blame or help make sense of it. There isn’t a reason or meaning to my diagnosis. It just is. All humans are mortal and all human bodies are subjected to disease and illness. There are certainly preventative measures we can take to minimize risk, but there are no sure-fire ways to prevent yourself from all possible illnesses and injuries.” 

Okay, so I’m going to be my 2022 self here. I actually really love this. This is very, I still resonate with it now. And because I’m more active in the social media communities and the chronic illness communities, I see there’s so many toxic messages that I do try to help people critically look at – like, and if it’s working for you, then no need to fix it. If it ain’t broke, don’t fix it. 

But there’s so many, especially in the autoimmune space, a lot of people that are like, “All you have to do is treat your body like a temple and like, feed it only clean things and you’ll be great.” And it’s not really that simple. And we all want something to blame. We all want there to be a reason because if there’s a reason, then the world makes sense. And it’s very destabilizing to understand that the world doesn’t actually make perfect sense. I can really see the seeds of Acceptance and Commitment Therapy in here in terms of like, I was like, primed to really understand the message of Acceptance and Commitment Therapy later on, because I already was kind of halfway there. 

And so, I do still really believe in all of that. I think it’s important to acknowledge that there are things that preventatively can help you minimize the risk of flare ups for rheumatoid arthritis. And obviously, I teach those things — I shouldn’t say obviously, I teach those things and in the Rheum to THRIVE program and framework, you know, tools for pain and fatigue, healthful habits, things like prioritizing sleep, using joint production strategies. Those aren’t random, right. There’s parts of it that are not random. Those things generally will work and you’ll find a toolbox  that will work for you to minimize symptoms and alter things to a certain degree. 

But the fact that you’ve got it in the first place might not be something that’s under your control, and there are going to be these random flare ups that there’s just no reason for them. 

Okay, so, now I’m back to 2013: “My diagnosis led me to confront the infallibility of my own body, which in turn made me confront my own mortality. The realization that ‘my body, my physical body, is not completely under my control’ naturally led to ‘my physical body will eventually not work anymore’. Accepting my mortality has been crucial for giving me a strengthened sense of purpose and an urgent desire to make a meaningful life. The graph below outlines the interplay of these factors.” 

So, I have all of my medical appointments, and studying and working in health care, witnessing others fall to illness as well, and feeling my symptoms, you know, all those things remind me constantly of mortality, and lead to the urgency to make the most of my life while I’m alive. 

So, “The fact that I’m going to die someday gives immediate perspective to any situation. My ‘Bible’ of sorts is a combination of ‘Man’s Search for Meaning’—” that’s an awesome book, “— and ‘Tuesdays with Morrie’. Both of these books deal with the concept of death straight on. But while Morrie is religious, the basic truths he utters are equally applicable to agnostics and atheists.” 

This is a quote from Tuesdays with Morrie: “‘Ageing is not just decay, you know. It’s growth. It’s more than the negative that you’re gonna die. It’s the positive that you understand you’re going to die, and that you live a better life because of it.’ Morrie Schwartz in Mitch Albom’s ‘Tuesdays with Morrie’. 

Confronting my mortality and the mortality of all humans has been the compass around which I live my life and make decisions. It’s the only thing I know for sure. I am alive now. I will die someday. And I desperately want to leave something positive for the world behind to make my life worthwhile. There is no inherent meaning to my life, the only meaning comes from the good or bad actions I choose to take during my limited time on Earth. 

Sure, I knew I was going to die on some abstract level before I got diagnosed with RA. But there is something about a stark black and white diagnosis that makes the abstract concept of mortality more real. This is perhaps the greatest gift that has arisen out of my diagnosis.” 

Phew, okay, I got really deep. That was 2013. Now I’m 2022 me, looking back on that. Yeah, I mean, I still resonate. I’m like, yes, Cheryl 10 years or 9 years ago, I agree with you. 

I don’t think I actively think of my mortality, kind of – I think about it quite often, I don’t know if I quite think about it as much as it seems there back then. But it is kind of the grounding factor, right? That it’s like, okay, is this important? If I’m stressed out about something, I will sometimes use that kind of Cognitive Behavior Therapy strategy of like, is this going to matter in 5 minutes, 5 weeks, 5 years, you know, 50 years? It’s not — if it’s not, it’s not gonna matter, then, you know, because I do tend to sometimes spiral with anxiety, you know, about like littlest things. 

And so, I do think, okay, this is like, this is anchoring me. Like, this is the only time I have left on Earth. I really do feel an urgency because I don’t know how long my life is going to be. So, that’s actually kind of what motivates a lot of my videos and content. And this is, my brain is going in so many directions. 

I’m like, oh, this reminded me that I need to like, there’s this thing I need to do that I keep forgetting how to do it. It’s like leaving your digital legacy or something about like, if you die, what happens to your digital content? I’m like, oh, no. I’ve given my husband some of the logins, but there’s some sort of legal thing you can do like a will, but for your digital assets or something. Anyway. So, now I’m thinking about the practicalities again. 

But yeah, I think this is something that a lot of people with chronic illness go through. And obviously, during a worldwide pandemic over the last few years, a lot of us have seen, we’ve seen people go from healthy, quote-unquote, you know, ‘no health issues’ to dead due to COVID. And so, and this has already been happening for other reasons for a long time. So, it’s a big kind of deal to kind confront. 

And, you know, I know for a lot of people, religion brings them a lot of comfort and a lot of groundings. Because, for me, since I don’t feel a faith in any sort of particular religious tradition, I just can’t find a reason to believe one more than the other, that then, for me, it becomes – OK, what is the truth that I know for sure, you know? 

And that’s that I have time — I don’t know how long that is — and that I, you know, have the ability, I’ve been given great privilege even despite all these health issues, I still consider myself a very lucky person and I want to leave the world better than I found it. So, that’s my grounding thing. 

Oh, that’s Teddy snoring a little bit. Okay, so here’s my conclusion in 2013: “In conclusion, the effects of RA have extended far, far beyond the physical in my life. My diagnosis affects everything from the micro elements of my life (such as how I approach simple daily living tasks in the kitchen) to macro elements (like my sense of purpose and acceptance of my mortality). I hope that this exploration has helped the reader see RA as much more than simply autoimmune-caused ‘joint inflammation’! I’d love to see charts of other people’s top life effects of RA. Feel free to share your experiences in the comment section.” 

Oh, there’s 31 comments! Wow, okay. Wow, yeah, this is great. I mean, I find it really fascinating to look back. I’m also, by the way, on this nostalgic note, we are going through our garage right now and I found some old boxes that are like e-mails that my mom printed out that I sent her during college, which includes 2003 and 2004. And so, I’m really interested in looking at some of those because I have told the story of my diagnosis many times, but as most of us know, memory is very — memory is self-created each time we tell a story about what happened in the past. 

And so, I’m very curious how my memory of these events, you know, overlaps. Hopefully a lot, but maybe not with the actual realities. It’s very possible there’s a lot of things I forgot that I thought or went through. So, I’m hoping to find some of those. I have some boxes, but I’m looking for the specific ones about the diagnosis. 

So anyway, well, I hope this was helpful. Again, I know I’ve kind of had other episodes where I’ve talked about this whole concept of like, you know, it’s not just joint pain, right? That’s like one of my most popular podcast episodes is, “It’s not just joint pain.” And so, and also the episodes, it’s like, “Can you live a normal life with rheumatoid arthritis?” You know, what is a normal life? Why are we prioritizing normal ways of being, you know, able-bodied and stuff like that. 

But I think, you know, I think that what I want to leave you on, just off the top, my head is there is a process of grief that many of us go through. Grieving your past self, grieving the life in the future that you thought you would have, grieving the things that you did or didn’t do, even in the past with your diagnosis. I know a lot of people who were afraid of medication and didn’t take it initially, and then their disease progressed really quick. And they grieve that decision; they wish they had gone on medication sooner or vice versa. There’s just a lot of grief we can go through and I think I’ll just encourage you to, you know, or I’ll say in my own self, I’ve definitely had those moments. It’s like, one of my friends is running a half marathon. And I have this real, like, consistent thing where whenever people are running marathons, or my brother did too, and I was like, “I should have run a marathon when I could,” you know, I always that was one of those things that I was capable of, but I just didn’t prioritize at the time. I always thought, “Oh, I’ll do that later. I’ll do that later,” you know, and later, is not, you know, it didn’t happen. I may still have one in the future.

But, you know, sometimes I’m hard on myself. Why didn’t you just do it back then? Why didn’t you understand that your remission wasn’t permanent? I have said this many times, but when I went into remission on my first biologic plus methotrexate, I just thought that was normal. I thought that was what everyone experienced. And so, I thought it would last forever. So, I didn’t — I really did take it for granted. I really didn’t do things with the idea of, I might not still be able to function as well in the future. 

So, you know, I sometimes am hard on myself. Why didn’t you know that? Why didn’t you listen to your doctor? I’m assuming they told me at some point, but you know, we have to be gentle on ourselves; we have to practice self-compassion. And I remind myself constantly, you know, you did the best with the information you had back then. And now, you’re doing the best with the information you have now. And that’s just — that’s that. I don’t want to waste the time I have now berating myself constantly for things I should have done differently.

So, I hope this has been helpful or interesting. For many of you, I would love to hear, as always, I would love to hear your takeaways. 

And oh, I actually have never said this to my memory, but like please if you don’t have — if you have time and if you’re interested, please do rate and review this podcast because for having 60,000 downloads, we don’t have that many. I’m saying ‘we’, it’s literally me. We don’t have that. I don’t have that many reviews and ratings. 

So, I would love to actually know your feedback, you can email info@myarthritislife.net, or you could like just write a review and then I would know it that way. So, thank you so much for listening. I truly do appreciate people taking their limited time on Earth to listen to this podcast. And thanks again. I’ll talk to you later!

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