Episode Chronic Eileen
Podcast

From Devastated to Patient Leader: Eileen Davidson’s Rheumatoid Arthritis Story

April 15, 2021
47 min read
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Eileen shares her journey going from devastated and overwhelmed to being a patient leader, writer, advocate and research contributor in just six years. She also shares reflections on mental health, single parenthood, the importance of exercise and tips for symptom tracking.

Episode at a glance:

  • Eileen shares her rocky road to an RA diagnosis when he son was two years old
  • How Eileen’s blog led her to patient advocacy and research 
  • How symptom tracking helped Eileen reduce pain and improve fatigue
  • How exercise helps Eileen reduce pain and improve fatigue
  • What it’s like to be a single mom with RA
  • Reflections on  mental health while living with chronic illness

Speaker bios:

Eileen Davidson is a rheumatoid arthritis patient advocate from Vancouver British Columbia Canada. She volunteers with the Arthritis Research Canada patient advisory board and the Canadian Institute of Health Research – Institute of Musculoskeletal Health and Arthritis patient engagement research ambassador. When not advocating she is writing about her experience with arthritis through Creaky Joints, Chronic Eileen or can be found being a mom to her son Jacob.

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

This episode is brought to you by Rheum to THRIVE, a membership community Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. 

Episode links:

  • Arthritis Life Program Links
    • Join the waitlist for Rheum to THRIVE, a membership community Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. 
    • Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition.

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 Chronic Eileen

Here’s the show breakdown:

1:40 – Eileen’s diagnosis story: many years of symptoms prior to her diagnosis when her son was two years old. 

5:50 – How Eileen’s symptoms affected her ability to take care of her baby. 

8:16 – Eileen’s devastation after receiving her diagnosis due to seeing her aunt suffer from severe rheumatoid arthritis and pass away the same week.

10:00 – How Eileen learned to trust her medical providers.

11:20 – What helped Eileen learn to cope with her RA and share her story publicly; how others responded to her story and how  writing introduced her to advocacy efforts.

15:00 – How others’ negativity motivated Eileen, and Eileen shares some of the positive responses to her writing.

17:45 – Eileen describes participating in arthritis research on symptom tracking using a FitBit, with a physiotherapist. Through tracking she started seeing patterns between menstrual cycle, sleep, exercise, rest.

22:30 –  Eileen learned the benefits of strength training and helped researchers explore barriers to patients participating in strength training. 

26:00 – Physical activity doesn’t have to look like formal exercise, it can be as simple as gardening, Zumba, yoga, or dancing.

29:00 – How the pandemic affected Eileen’s exercise routine and pain levels.

31:30 – How exercise helps Eileen with fatigue. 

34:00 – Eileen shares her journey with depression and mental health.

36:20– What’s helped Eileen cope with depression and anxiety from rheumatoid arthritis & pain.

38:00 – Eileen’s advice to other parents with rheumatoid arthritis and reflections on what her son has learned from having a mom with a disability.  

41:00 – How her rheumatoid arthritis has made her a better mom and changed her priorities

44:20 – The different forms patient advocacy can take.

46:00 – Eileen’s final message: if you’re interested in getting involved in research, don’t hesitate! 

Full Transcript:

[00:00:00] Cheryl: 
[Introductory note]  

Hi there! I’m so excited to welcome you to The Arthritis Life podcast where we share arthritis life stories and tips for thriving with autoimmune arthritis. My name is Cheryl Crow and I am passionate about helping people navigate real life with arthritis beyond joint pain. I’ve been living with rheumatoid arthritis for 20 years and I’m also a mom, occupational therapist, video creator, support group leader, and I created the Rheum to THRIVE self-management program. 

I am so excited to help you live a more empowered life with arthritis. We’re going to cover everything from kitchen life hacks, to navigating the healthcare system, to coping with friends who just don’t get it. Seriously, no topic is going to be off limits on this podcast. My interviewees and I share our honest stories of how chronic illness affects our lives. This includes discussions about mental health, sex, shame, pregnancy, body image, advocacy, self-acceptance, and so much more. You’ll hear stories from all ends of the spectrum from a person who’s living in medicated remission from psoriatic arthritis to somebody living with severe mobility restrictions and severe pain from rheumatoid arthritis. 

You’ll hear how people manage their conditions in different ways like medications, mindfulness, movement, social support, work accommodations, and so much more. You’ll also hear from rheumatology experts who just get it. We’ll dive deep into the science behind chronic pain and what’s the latest evidence for lifestyle changes that can help you thrive with arthritis, including exercise, sleep, nutrition, stress reduction, and more. This is your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started.     

This episode is brought to you by Rheum to THRIVE, a brand new support and membership community that I created in order to help people build a life they love despite rheumatic disease. I’ll be teaching you how to develop your own THRIVE toolkit, which is the exact process I use to live a full life despite rheumatoid arthritis. Check out the show notes to learn more. 

Hi, my name is Cheryl Crow, and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years, and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks to how to respond when people say, “You don’t look sick.” Stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness – no topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started. 

Hi, Eileen. Welcome to the Arthritis Life Podcast. 

[00:02:42] Eileen:
Hi. Thank you so much for having me here today. It’s a pleasure. 

[00:02:45] Cheryl:
Yeah. I wish we could be in person, but this is second best. So, can you tell the audience a little bit about yourself? And where in the world are you, and how long have you had rheumatoid arthritis?

[00:02:58] Eileen:
Well, I live not too far from you, about four hours north in Vancouver, British Columbia. Although we’re separated by a border, we’re really not that far. Our weather is much the same. And I live with rheumatoid arthritis. I was actually diagnosed almost exactly six years ago, and it’s been a journey.

[00:03:17] Cheryl:
Yeah. Let’s start with that. I love hearing people’s diagnosis journeys, sometimes known as sagas. So, what were your first symptoms, and how did you get diagnosed? 

[00:03:27] Eileen:
Well, I can’t really quite pinpoint my first symptoms because I started to experience pain in kind of multiple areas for a long time, and it would come and go. I was usually told that it was just carpal tunnel because I was young. It was around 24 when that started to happen. And I was working as an esthetician, which is quite a physical job, so I was using my hands a lot, I was hunched over a lot. And so, that’s why, having such a repetitive job, I was kind of dismissed having any proper tests done. And I just kept complaining about the pain. And eventually, my family physician at that time was like, “Well, wear a wrist brace,” but I complained how wrist braces were very, very uncomfortable, especially at night. It seemed like my hands and wrists were swelling. 

And then, the symptoms really, really progressed during the third trimester of my pregnancy when I was 26-years-old. I have never had as bad of swelling before and they were really worried about preeclampsia with me. And I was experiencing a lot of pain and fatigue, and I was told that all of that would go away after my son was born. It never actually did. In fact, I took the year off for maternity leave and that’s when I thought that my pain would get better, especially the carpal tunnel, because the number one thing they’re gonna tell you to do if your carpal tunnel doesn’t need surgery is just rest it, stop doing what’s aggravating it. So, I did stop doing that, but that pain never went away. The swelling never away went away. The fatigue didn’t go away. 

At first, I thought maybe I was experiencing hormone issues because I just had a baby. I thought my depression was just postpartum depression, but it was a bit more. The fatigue, and then the acne. I had quite a bit of cystic acne. And I was constantly hot. It was very easy for me to put on weight. Exercise was very, very difficult for me to do, even though I desperately wanted to lose the baby weight. So, there was just a point where I went back to work and jobs that I used to be able to do quite fast, you know, Brazilian waxes, massage, pedicures, facials, makeup applications, all of those things became extremely painful and I couldn’t do them anymore. I also started to get really slow at doing them. Started to forget things all the time, and I was also constantly catching infections. I was always sick. 

So, at that point, I was in the back room at my work all the time crying after just one service and I was like, this is not carpal tunnel syndrome. This is something more. Now, given my family history, my aunt had rheumatoid arthritis, but I actually really had no idea what arthritis really was, even though I had heard that name mentioned before. But I was just like, arthritis, right? It’s just joint pain, I learned the hard way. And so, a coworker was like, “Well, maybe you should get tested for RA then.” I was like, yeah, what? How do you know? She’s like, “Oh, I have a friend and it’s a blood test.” 

I’m like, okay, I have an appointment with my family physician. I’m gonna ask about rheumatoid arthritis ’cause that’s in my family. And so, I went into my family physician’s office and I said, “Can you test me for RA?” She said, “I don’t really see any swelling. You’re a bit young. Maybe fibromyalgia, but a rheumatologist is the one who has to diagnose that, so I’ll send you to one anyways.” But when I did see that rheumatologist a little bit like a month later, I was diagnosed seropositive rheumatoid arthritis. 

[00:07:13] Cheryl:
Wow. And what strikes me as also a mom listening to this is that your job was so physically demanding that even the demands of having a baby were a break, quote unquote, a ‘break’ for you. Whereas for many moms who are having joint issues, that’s actually a really hard time. So, was it hard for you taking care of your son when he was a newborn with your hands? Okay. Yeah.

[00:07:41] Eileen:
So, I didn’t know I had rheumatoid arthritis at the point. He was born a month before I turned 27, and I wasn’t diagnosed till I was 29. So, it took quite a few years to actually understand that my pain wasn’t my misdiagnosis, and for me to actually stick up for myself, become that advocate to get my proper diagnosis. And also, for doctors to listen to me. But it was really alarming to me when I wasn’t able to do things that I really wanted to do with my son, like wear ’em in a baby carrier ‘cause it hurt my back and my shoulders and my neck too much. It really bothered me that the fatigue was so intense that sometimes, you know, I had to leave it up to my partner at that time to do the 3:00 AM feedings. 

It really also bothered me that I couldn’t breastfeed because I wasn’t able to hold him that long. My body just hurt and yeah, it hurt too much. And then, there was things like taking him in and out of a car seat. Anything with buckles or straps, it was just like I couldn’t do. I wasn’t strong enough or it was just too painful. And without my diagnosis at that time, people didn’t really understand why I wasn’t doing some things, especially the breastfeeding part. And that was really kind of a difficult situation because some people can be pretty adamant that breast is best, but it’s actually as long as your child is fed, that’s best. 

[00:09:10] Cheryl:
Oh, my gosh. Yes. I have gone on some rants about that myself, but I think that the take-home message for anyone listening, after you get that validity of your diagnosis, it becomes easier to advocate, right? Because you have, quote unquote, ‘proof’ that you have a legitimate illness. But it’s so hard in that pre-diagnosis period to advocate, right? But one of the things I look at as an occupational therapist is we treat people’s function and the, quote unquote, ‘functional deficits’ or their difficulties with daily tasks, regardless of their diagnosis. So, what strikes me is even if you didn’t have a diagnosis of RA, even if it was only carpal tunnel or just diffuse pain of no known origin, you should have gotten some more support in all those areas. But let’s go chronological. So, then you got your diagnosis. What did it feel like when you got it? 

[00:10:03] Eileen:
Well, it was actually a very devastating experience for me because the aunt that I said that also had rheumatoid arthritis, she was — she actually passed away the same week that I was diagnosed. That was a huge eyeopener and it was a very, terrifying experience because she was diagnosed forty or so years ago. So, obviously treatments have changed since then. But I saw what rheumatoid arthritis had done to her body and done to her life. And when you’re freshly diagnosed and somebody that close to you passes away — it wasn’t RA that killed her. But comorbidities definitely had a huge, huge impact in eventually what did take her life. But I never saw her walk really walk more than just a few steps. Her hands were deformed and she was always in pain. She was morbidly obese. She had diabetes and everything too. So, I really saw what that did to her. 

I also saw how mean family members were because they didn’t understand what was going on with her. So, it was difficult to be diagnosed with that because the same family members that had kind of hurtful comments towards her were not being supportive to me. And then, at the same time, I had just learned how devastating and debilitating rheumatoid arthritis actually is. I admit that I always thought arthritis was mostly just joint pain, happens to the elderly kind of thing. I had no idea it was actually an autoimmune disease or the medications involved. So, I definitely went through a process, the grief process, denial, bargaining, acceptance eventually, but it took a long time to get there and it was a process to find the right medications that actually did help me. 

And it was a process for me to actually learn to listen to my doctors. I didn’t quite understand a lot what they were saying. I’ve never before had to see a doctor so much. Every time that I was sick before it was always, it was a quick fix. Here’s some antibiotics, here’s something that you only take from tops two weeks and yeah, you’re better. So, this is like something that they’ll be like, “Well, you gotta try this medication for six months to see if it even works for you.” So, yeah, the first year or so was incredibly hard for me, physically and emotionally, just trying to come with reality or my new reality that I was living with this disease.

[00:12:42] Cheryl:
Yeah. And so, fast forwarding to now, you are such an active patient advocate and you’re a writer, you write about your experiences, and it’s only been six years, is that right, that you’ve had it? 

[00:12:54] Eileen:
Yes. 

[00:12:55] Cheryl:
Yeah. So, can you maybe explain a little bit like how that transition went from that initial kind of shock and grief to — it seems like I’m gonna put words in your mouth, but you’re really, you own your rheumatoid arthritis now, and you’re very active in managing it through things like exercise, and you’re a patient advocate, and you engage in research. So, how did you — what helped you get to where you are today?

[00:13:22] Eileen:
I think that I was just incredibly frustrated with people’s misconceptions and stigmas around arthritis, chronic illness, and living with an invisible illness. And being typically a very vocal person, I started just complaining on Facebook and then somebody said, “You should become an advocate, or start a blog,” and I was like, oh, okay. And I always kinda loved writing, but I had never had an outlet or anything special to really write about. I wrote about concert reviews and things like that, but then I started to write down my experiences and it was a very cathartic experience doing that. And doing so actually got me attention really quickly from Healthline and some other publications. 

And I introduced myself to the Arthritis Society, which is like the Canadian version of the Arthritis Foundation. And that’s when I became an ambassador and I started to really kind of discover what advocacy is, all that it entails and that everything that I was feeling and saying was being reflected on the 6 million Canadians living with the disease. And then, also that goes for, you know, the millions of people in the States living with it and or other places too. And we’re all kind of experiencing the same sorts of things. And just hearing how my story and what I was doing was helping others just really pushed me forward to keep sharing my story, keep creating, awareness for arthritis writing. 

Like I said, it was very cathartic to me that I just kept practicing, kept writing, and then I stumbled across an opportunity to participate in research and joined the Arthritis Research Canada Patient Advisory Board, which has introduced me to many different people living with arthritis and some of Canada’s top scientists and researchers when it comes to this illness, and it’s been an experience and a half. It’s how I met you in person at the American College of Rheumatology Conference. They sent me there, and now I’m writing for their newsletter. I get to participate in studies and it’s been such a rewarding experience because not only am I helping myself by doing so, but everything that I’m doing is also going into teaching others who are going to be taking care of future arthritis patients or current ones. And it’s also helping people understand the disease better. 

[00:15:52] Cheryl:
Absolutely. And I really love that someone gave you the nudge after you — this all started when you posted a vent thread on Facebook, and who among us has not vented on Facebook before? And that you got a nudge from somebody to just start your own blog and that has led you to all these opportunities and I just encourage anyone listening to share your story. ‘Cause I’ve had the same experience you have. I didn’t expect anyone to really care about my blog. I did it initially more for just myself as almost like an online diary and think, oh, maybe one or two people will find it. Yeah. But yeah, what are some of — can you share any responses that your audience has had that have really stood out to you or just, general responses you’ve had to sharing your story on those larger platforms? 

[00:16:44] Eileen:
Well, I’m going to dial back a little bit. When I first started this, my roommate at that time told me, “No one would care. No one will listen.” So, that fueled me. And also, just some of the horrible things that people said about my disease, and then also just the ignorance around arthritis. That fueled me. And then, so now I’ve had so many people listen to me and, like, I proved those people really wrong. Some of, like, some of the most surprising things that I’ve gotten out of this is I’ve had a lot of different types of researchers or healthcare providers who actually follow my blog or follow me on social media to learn more about arthritis. I’ve had rheumatologists thank me for my writing because they have a deeper understanding of the disease or the patient experience. I’ve been celebrated on local news even about my advocacy. 

My blog has been awarded, one of the best arthritis blogs to read, which is something I never expected when I started making it. The Canadian Institute of Health Research has even recognized my advocacy. And then, the countless patients that say thank you for all that, what we say and everything. It’s so worth it. I’ve even had an emergency room doctor diagnosed with RA say that my blog has helped her understand the illness more. And that’s something very interesting. ‘Cause before she had just a clinician view of it, now she’s living with it. So, even though I don’t have a medical background, my writing is still able to help others.

[00:18:31] Cheryl:
For me, being trained as an occupational therapist health provider, not like a physician provider, but sometimes the textbooks can be so dry. And even when they try to — they try, they put little boxes like, “Here’s the patient story,” but there’s nothing like hearing it from someone’s real, like, from the actual person sharing what it really means to you to navigate this disease as a single mom and as somebody trying to balance her career, your initial career as an aesthetician and now finding, figuring out how you can support yourself and work while managing this condition. 

[Intermission begins]

This episode is brought to you by Rheum to THRIVE, a membership and support community where you’ll learn how to develop your own THRIVE toolbox so you can live a full life despite your rheumatic disease or chronic illness. Learn more in the show notes or by going to www.myarthritislife.net. 

[Intermission begins]

How has your experience participating in research help you kind of learn how to manage your day-to-day of your rheumatoid arthritis?

[00:19:43] Eileen:

Speaking about what actually entails in arthritis research is a bit tricky because there’s so many different things that studies can be studying and different types of studies. But mainly, I’ll talk about a couple of the studies that particularly have really helped me, and these are all through Arthritis Research Canada. In particular, I participated in a study where they were using a Fitbit and an app that they developed to help people with rheumatoid arthritis better understand their disease by health tracking. And so, that particular study was led by Dr. Linda Lee, who was also my physiotherapist. So, we have a close bond, I would say. And that particular study was really interesting because I started it on my 33rd birthday. So, it was exciting for me to kind of look forward to tracking my health and trying to get healthier starting when I’m turning 33. But at that point, I’ve been living with the disease for four years. Didn’t quite understand it as best as I do now ‘cause it takes years to understand this. I’m still learning today. Also, I had just started another medication a few months prior. So, I wanted to know if that medication was working. 

I was also exercising, but I didn’t know where to turn to, anyone that actually knew about exercise and rheumatoid arthritis because when you go to a personal trainer or just any physiotherapist, you don’t know how much knowledge they actually have about arthritis until you ask them. And not all physiotherapists are created equal. It’s always best to look for somebody who has the advanced training. And personal trainers typically don’t know how to help somebody living with a disability. And so, that’s why I was really particularly excited about the study. So, it was to examine how my physical activity in the day impacted my symptoms. 

While wearing the Fitbit, I made a step goal of 10,000 steps a day, which is actually quite a bit. And at first, it took time to get used to that and build myself up so I could see myself in the little grass through the app, the Operas app, as I would do my steps, my physical activity, and how that would impact my sleep, how it would impact my fatigue, my pain, my mood, my stress. And then, I could also take notes in the journal. So, if I had appointments or infusion dates or things like that, I could see like how long actually I was left in that kind of hangover medication, hangover state. Or I could see little things like how when my period came up, how it would impact my pain levels, my fatigue, or my sleep. I could also see things like how my sleep would impact my fatigue through the day. I could typically see how long I needed to rest in order to feel refreshed. It’s two hours. 

And then, I was able to just track a number of things, like my medications and see that over time, yes, it was working, my pain was going down, my physical activity was going up, my fatigue was going down. And then, I was able to also catch things when they were starting to go wrong. Particularly was even after the study was finished, I kept doing the health tracking because it’s so beneficial and I was able to catch that my pain was going for too long, particularly for three weeks or more. And it was developing new kinds of pains and things like that, and that’s when we were able to kind of see that I had a rare copper deficiency and that how much that was impacting. So, once again, I went back to health tracking when I started my vitamin supplements, and see how that improved my symptoms over time. 

And because I had so many questions about if physical activity was good for me with RA, particularly am I overdoing it, it was able to see what on those days, how much I would do to actually be overdoing it and how much time I would need to generally recoup after it. And I would actually see kind of weird patterns where it’s necessarily, I would have one day, I may overdo it. For example, like I walked the Vancouver Sea Wall. It was just over 27,000 steps. I can’t remember how many kilometers or miles that was, but it was a long walk. And it wasn’t the next day after that I felt it, it was actually two days after. And I started to notice patterns like that with tracking my health. And so, participating particularly that study taught me so much about my rheumatoid arthritis and it gave me some reassurance on how physical activity is actually really great for us. 

[00:24:17] Cheryl:
Yeah, and I think this is one of the most confusing areas. Well, first of all, just learning how to track ’cause it can feel so overwhelming ’cause there’s so many different factors. But you’re still right. Having a format, whether it’s an app or a physical journal to just write it all out, that even just the process can help you start seeing those patterns like, oh, yeah, when I slept for only six hours, then my exercise tolerance was a lot less the next day; but then when I slept better, it wasn’t. But the other thing is figuring out that, what I call like just the sweet spot for exercise complicated because it’s like how much are you pushing your cardio versus how much are you pushing your muscles? So, can you maybe explain to the audience a little bit what kinds of exercise have you found work for you, and in what amount? How do you break that down? 

[00:25:06] Eileen:
Okay, so I’m gonna go back to another study that I participated with Arthritis Research Canada. And this was a study that was on strength training for those with rheumatoid arthritis. And it was kind of really focused on the barriers that was coming up for people with RA and why they weren’t strength training, because quite a few with RA actually don’t strength train despite the massive amounts of benefits that come from it. And so, I met with an Arthritis Research Canada researcher, who is also a kinesiologist, and we talked about all those barriers, like fatigue, memory, pain, motivation, depression, anxiety, not knowing how, fear of pain. There was actually quite a few different barriers. 

And so, over time, I worked with her on how to kind of chip away at those barriers. And kind of because she has special knowledge in helping people with disabilities become active through experienced advanced training, she was able to come to my gym, kind of show me what exercise is good and give me tips. So, I learned things like if I strength trained before I do cardio, it’s actually a lot easier because I am not dealing with as much muscle fatigue that way. And that was something that I was doing completely wrong because the gym that I was going to, the cardio room was before the weight room, And so, I would just go to the cardio room first, and then I wasn’t really good or hurting myself while I was strength training. And she also pointed out to me that, you know, I would complain about how not every day is the same.

And so, she’s like, “Well, then don’t have just one workout, have two. Have one for the good days, and then have one for the not so good days.” Because the key is motion is lotion. It’s just as long as you’re moving your body in a way that you actually enjoy doing, even if it’s light movement, low impact movements, it’s better than just sitting there doing nothing. She was also able to teach me simple things like using resistance bands versus the heavier weights when I’m in a flare because they’re not gonna be so heavy on my joints. And it was just reassuring to talk to somebody who actually knew how somebody with a disability is going to exercise. Even her just telling me, she’s like, “A lot of my patients smoke a joint before they come to their exercise class because it’s the only way they can make it to the exercise class.” And it was just so reassuring knowing that it’s okay, I kind of might do that sometimes. And I’m not alone. 

It’s just those little things that if they help us get moving, oh, it’s wonders. And another huge point that I learned while participating in research is physical activity doesn’t necessarily have to look like, you know, 30 minutes of strength training, do 50 squats, some lunges, some planking, and then a bunch of arm moves. It could also look like gardening. It could look like yoga, it could look like Pilates, or Zumba, or dancing, or even just stretching and moving your body around. It can be badminton. It could be cleaning your house. And it doesn’t need to always be the elliptical. It could be just going for a 30-minute walk. And you don’t need to actually do it all at once. You can split it up throughout the day. So, if you can’t really tolerate 30-minutes standing or walking on your feet, then just do 10-minutes and slowly build it up over time. 

[00:28:34] Cheryl:
That’s so true. I know a lot of people in the exercise community lately have been saying to really emphasize movement over exercise because there’s a lot of baggage connected to the word ‘exercise’. And so, I love that idea of just saying movement. And yeah, I loved your examples. Gardening, dancing, taking the dog on a walk. And it was interesting. I actually saw on Twitter the other day, a doctor had said that their patient had requested that they amend the note from the appointment because the patient said that they take their dog on a walk every day. And the doctor had written that they don’t do any exercise and the doctor was saying kind of derogatory towards the patient that that’s not real exercise. And that’s so against what all the community of — I know physiotherapists, occupational therapists, I’m not gonna say everyone is saying that, but that really respecting that movement is the goal and not making it have to be this formal exercise at the gym.

So, but I’m glad you separated things into strength and cardio. Sometimes what you’re doing is helping both, right? Like, for me, stairs are a good example or elliptical. You’re definitely getting some muscle strength. I can definitely feel those in my quads. But others, other times you can do an exercise that’s kind of like exercise bands. Don’t get your cardio up too much, or resistance bands, but they get the strengthening. So, I think a lot of times if one of those is more intimidating to you than the other, maybe start with the one that’s less intimidating. If you’re like overwhelmed with the thought of taking a long walk ‘cause of the cardio demands and the breathing, then start with resistance bands and do something. Or just even, not even bands. You can do a wall-sit in your own home, put your back against the wall, bend your knees and try to hold that for 20-seconds even. There’s so many things you can do. And I know you’ve talked about missing your gym right now ’cause the pandemic. Are you doing your exercises at home now? Or your movements, sorry. 

[00:30:43] Eileen:
During the pandemic, I knew that not having access to my gym and my self-management skills was gonna definitely cause an impact in my pain, considering how much pain relief I do actually get out of regular exercise. So, yes, my pain levels definitely went up when I became more sedentary and have less things going on. And during the winter was really, really difficult because it’s cold, it’s rAiny. I didn’t wanna go outside so much. My motivation’s low; my depression’s up. But now that the sun is out again, I love to go for walks. I like just going to explore my neighborhood. That vitamin D out there is so good for us. The heat on my, it feels so good on my arthritis, especially since it’s not too hot yet. And yeah, so I’ve started doing a lot of exercises at home. I did buy a treadmill. One particular reason I wanted a treadmill is because it has an upright angle, so that’s actually really good for strengthening your muscles to make going upstairs easier or going hiking easier. And I like doing that on the treadmill versus actually a real hill because going down is more painful than actually going up the hill. And it is a really, really good workout. 

I didn’t need to run doing it, but I would work up a really good sweat, but I don’t use it as much because I don’t have the social pressure that the gym has. And I would also go into the sauna after the my exercise at the gym where I typically was doing the elliptical because it was a low impact exercise and at that time, that’s really what I needed because I wasn’t able to do the treadmill until I lowered my inflammation and my meds started working a bit better. And also, the exercise too. ‘Cause exercise is proven to lower inflammation. So, you also have to ask yourself, how much inflammation does my body have? How easy is it to trigger that inflammation? That’s where health tracking can come really handy too, because you can kind of typically tell when you’ve overdone it and you can maybe check, oh, I’ve done 1000 steps today. I’ve overdone it. I need to take a break.

[00:32:53] Cheryl:
 I really triggered my fatigue last weekend after a hike. And a hike is not a normal activity for us. And it was one of the nice sun, first sunny days, and I got a little too ambitious and I went from my normal amount of exercises, like 30-minutes a day on the exercise bike. And then, we did a two-and-a-half-hour hike. I’m like, doesn’t take a genius to predict that would be too much. That’s too much. Yeah. But I was gonna add, it reminded me to ask you about fatigue because this is one of the little known benefits of exercise is actually potentially helping your fatigue so long as you don’t go completely overboard, like, overdo it and trigger your fatigue to be worse. So, do you find if you have that good amount of exercise, like whatever that is defined for you, does it help with your fatigue as well? 

[00:33:42] Eileen:
Absolutely. So, when I restart an exercise routine, say after I’ve gone through a flare, I’ve missed a bit for exercise, typically about three weeks, everything kind of becomes horrible again. If I’ve not been exercising regularly, I do find that it will take me a couple weeks to reboot myself, rejuvenate myself. And so, exercise for the first few weeks, typically two weeks, kind of sucks. You might get a little bit more pain. And you’re definitely gonna get some more fatigue. And then, when you have more fatigue, you’re gonna have more malaise and more brain fog, right? So, yes, the first two weeks kind of suck. You’re gonna be tired after. I found, like, after exercise, that’s when I would need a nap the first couple weeks. 

However, once you get over that initial bump, that’s when you’re just like, wow, I feel so much better. I feel so much energized. And you’ll actually start notice pretty soon that you’re sleeping better. Exercise really helps people sleep better as long as they’re not doing it too close to bedtime. After a while, I do definitely notice that fatigue, my fatigue levels really, really lower when I do exercise regularly, as long as I’m not overdoing it. I love to go for hikes every once in a while, usually on a Sunday kind of thing, and I overdo it. But I don’t wanna not do something and get to see beautiful views because of my illness. You just kind of need to sometimes plan around it. 

[00:35:11] Cheryl:
Yes, absolutely. And decide which trade-offs are worthwhile for you, especially, in the olden days when we used to travel, for example, we went to Disneyland. I knew I was gonna need a few days to recover after Disneyland, even with a nap every day. I just, we want to maximize what we could do there. So, but I was gonna also ask, you’ve mentioned a few different times about mental health. Sorry, just to switch gears ’cause I don’t wanna forget to ask. I so appreciate how open you’ve been about mental health and in general, plus balancing the way that having a chronic inflammatory illness like rheumatoid arthritis can affect your mental health. Is there anything you’d like to share with the audience about your own journey, how you’ve managed symptoms of depression and anxiety with having rheumatoid arthritis? 

[00:36:01] Eileen:
Yeah. Definitely have a lot to say about mental health and RA or just mental health on its own. I was actually diagnosed at 17 with clinical depression. But back then, we’re talking early two thousands, I was just told to lose 10 pounds by my family doctor and call a psychiatrist if I need one. No referral. And so, that’s really, really not good advice to a 17-year-old girl who’s going through, anxiety and depression has no clue what it is. So, I hid that diagnosis in shame for a long time. I’d go through boyfriends and they’d be like, “You’re crazy,” and things like that, and feel worse. It was eventually, my rheumatoid arthritis diagnosis was when I actually reexamined my mental health. And it maybe come to terms that, yeah, I do have mental health problems. I have anxiety; I have depression. It is time to take control of that. 

And since my diagnosis, I’ve definitely noticed that there is a huge connection between the two. If something bothers me, my fatigue goes right up. When my fatigue goes up and I’m not able to do things, stress goes up, bad sleep, and then pain goes up, and it’s a vicious cycle. Same thing. When my pain is up and I can’t do things and I get more depressed and I get overwhelmed because things are piling up. And I’m a mom, so that’s really hard to go through sometimes. It seems if my stress is high up, it’s like my body doesn’t wanna move. There’s a wall there, and I just sit there and I’m like, I can’t figure out what to do, but panic inside. If I have a bad day emotionally, I’m gonna need a long nap that day. It takes a lot out of me. And I know that I’m not alone because, like, oarticipating in different research studies and keeping up to date with research, there’s so many people who have different forms of inflammatory arthritis that are dealing with depression and anxiety as well. And for those that aren’t, I really wonder how they do it. 

[00:38:18] Cheryl:
Are there any coping tools that you’ve learned either on your own or in therapy that have helped you in those moments? 

[00:38:27] Eileen:
Yeah. Well, I think writing, for sure, absolutely. Writing has definitely helped me. It’s kind of helped me process all my thoughts, come up with an action plan, help others be productive. I also love to paint. I love to cook, garden, my cats, my kid. And then, of course I do take medication. I’ve seen another clinical social worker. I’ve seen a psychiatrist. Meditation also can help if I feel like I’m going through a panic attack. Just laying there and doing some deep breathing can really help. Even just like letting it out. Like, sometimes you just gotta scream, you gotta cry, you gotta complain, swear, whatever. Just sometimes letting out or just talking through it and having somebody being supportive can make a huge impact. And then, me being me, it’s just I find a lot of relief in just tackling what I need to get done. I sometimes, it’s really hard to do through symptoms, but just doing it little bit by little bit and kind of being kind to myself really helps. I have to recognize that I am going through an illness and I try to not compare myself to others. I’m just me. 

[00:39:46] Cheryl:
I find it much easier to be compassionate towards others than self-compassionate sometimes, so I so resonate with that. And you mentioned your son. I know that people are gonna want to know, you got your diagnosis of rheumatoid arthritis when your son was two-years-old. It’s probably hard to summarize  how it’s affected your journey as a parent, but is there anything you’d wanna share about being a parent with rheumatoid arthritis or message to others who are balancing their disease and parenthood?

[00:40:17] Eileen:
Yeah, so another mention of don’t compare yourself to others, for sure. Do not compare yourself to the soccer mom that can, you know, bake amazing cookies and has a ton of energy and three, four kids and all that. you just need to focus on yourself and your child and what’s best for you. ‘Cause it’s your family, you know, forget others. And even though my child, like, I’ve had to deal with chronic illness basically my entire time being a mom, it has taught my son lessons that he probably wouldn’t have gotten if he didn’t go through a lot of what I’ve had to go through and bringing him along to — I take him to all the charity events, the Walk for Arthritis. He’s seen me on TV. He’s been there on TV and filming with me and things like that. And he’s come to all my doctor appointments. So, he has a really big, deep understanding of people with disabilities. Oeople are different. Everybody has different abilities. 

He’s come to be such a compassionate little guy who really understands arthritis. He said things like, I remember one time, somebody said, “Oh, but you don’t work,” to me. And I was kind of complaining about it. He’s like, “Well, yeah, mom, you don’t work. You have arthritis.” And just like reassuring little comments. If I need to grab something, he goes, “Oh, mom, don’t get up. I’m gonna get it for you. You have arthritis, like, you rest.” Kind of things like that. And actually, my most read blog post was written by him, which is really cute. He is however very sensitive to bullying, and those kind of things. When he does see students getting bullied for things like, particularly he has a friend who’s kind of covered in eczema. They’re in the third grade. So, that friend can get bullied and things like that. Jacob sticks up for him. His favorite t-shirt is the Walk for Arthritis t-shirts. He’s my little cheerleader and that’s not something that I really ever expected. I thought in the beginning of my diagnosis, I was gonna be a disappointing bad mother, I can’t do this because of my illness, but it’s actually probably made me a better mom. 

[00:42:36] Cheryl:
Wow. Can you say more about that? what other ways has it made you, do you think, a better mom? 

[00:42:42] Eileen:
Well, I guess it’s rearranged my priorities, that’s for sure. Before my diagnosis, I was a total metalhead. I was going to concerts. I made band merch. I dated a guy in a band that was a total jerk. Now, I love going to concerts and things, but I’ve just separated myself from that scene, which was actually really kind of toxic. So, I have different focuses. I focus more on my health now, and I think it’s just made me more understanding and more compassionate and more empathetic towards others’ emotions, even if I may have been that way before, but it’s really made me more in tune to how people are doing, how ways that I can help also to kind of just do what’s best for us. Because before, maybe I was comparing myself to many other moms or wondering, why am I not like this person? But it’s just kind of, it’s made me me rather than what other people want me to be. 

[00:43:49] Cheryl:
Totally. And I think one of the things that came up in my interview with Jamie on the previous podcast episode is we also have to be careful not to compare our current selves to what we imagine our current self would be if we didn’t have rheumatoid arthritis. ‘Cause that’s actually, I don’t know if you’ve ever done that, but I sometimes I’m like, if I didn’t have rheumatoid arthritis, I would be a better mom in this way. Or if I didn’t have rheumatoid arthritis, I’d be able to do this with my son. And that can be a really dangerous road to go down because this is the only life we have, right. 

You don’t get the option to turn back the clock or turn back your body and not have this disease. So, do you ever have a struggle to compare your current self to this imaginary self? I call it like the shadow self, the shadow me, ’cause I am, I’m the soccer mom type. Like, I’m totally the, my inborn personality is get gold stars, get approval from everyone. There’s things that are really not good about that mentality either. I’ve had to learn to let go of my perfectionism, and it’s actually been really freeing. 

[00:44:55] Eileen:
When I remember before my diagnosis, I wasn’t nearly as motivated, because I was also dealing with the untreated depression. So, I sometimes get a little sad that I didn’t get treatment early enough, because I think of all the things that I could have done if I wasn’t dealing with depression holding me back, you know, would I have gone to university? Would I have done better in school? Where would I be? But I just, I try not to think of that because I’m not the only person who’s been diagnosed with a chronic illnesses. This happens, right. And it’s just it’s up to you what you want to do with it in the end and what you can. And, yeah, I have to let go of some of that perfection for sure, like you’ve mentioned, and let go of the what ifs and just spoken on the what now, what’s going on tomorrow kind of thing. 

[00:45:50] Cheryl:
I love that. Let go of the what ifs and focus on the what now. I feel like we need to put that on a t-shirt. I love that. Okay, I wanna make sure I’m respecting your time. So, I’m gonna start wrapping it up. Is there anything more you wanted to say about advocacy as a patient? Sometimes people hear the word ‘advocacy’. They think it has to be formal advocacy, like going to my state capital or my national capital, which I know we’ve both done that kind of thing. But is there anything more you wanna say about kind of broadly, advocacy as a patient? 

[00:46:22] Eileen:
There’s just so many different forms of advocacy out there, and no patient has to fit a specific mold. Whichever advocacy form that person is passionate about, feels comfortable with, and feels at place within, do it. There’s like really no harm in sharing your story, even if it’s just talking about it on your private Facebook to being on the news talking about it, or lobbying with the government, or participating in research or fundraising. There’s so many different things to do. It’s just trying to find where to start. 

[00:47:09] Cheryl:
Yeah. And even in the context of just one doctor appointment, something I’ve started doing recently is trying to stop — I’ve started stopping apologizing for my symptoms. I used to always apologize, “I’m sorry. I’m sorry to ask about this. I’m sorry.” And I’m like, stop. I didn’t ask for this and their job is to help me. I’m wasting time by hedging. And it’s kind of like a female thing that we’re socialized, that we are socialized as females to have to feel like we have to apologize constantly. So, yeah, little things. And is there anything else you didn’t get a chance to say that you’d like to say to the audience? 

[00:47:48] Eileen:
Yeah, well, if they’re interested in participating in research, then there’s a number of ways they can. They can go to creakyjoints.org and find out different ways. They also have the Arthritis Power app, which is great for tracking their symptoms for those in the States. Or anyone with inflammatory arthritis can actually start tracking their health through Operas at the Arthritis Research Canada website or if they’re looking into getting into advocacy, they can either contact like the Arthritis Foundation local chapter, Arthritis Society local chapter, or they can also keep up to date with research studies that are being done throughout the American College of Rheumatology or local universities. Checking on regular Facebook groups that you follow will have different opportunities for those wanting to get involved as well. 

[00:48:41] Cheryl:
That’s wonderful. Well, thank you so, so much for your time today and I will be putting links in the show notes to the specific articles you mentioned, like Jacob’s blog post on your blog and also the Arthritis Research Candidate and the other opportunities you mentioned. So, thank you so much. 

[00:48:59] Eileen:
Thank you. It was a pleasure.

[Ending note]
Thank you so much for listening to today’s episode. This episode is brought to you by Rheum to THRIVE, a membership and support community where you’ll learn how to develop your own THRIVE toolbox so you can live a full life despite your rheumatic disease or chronic illness. Learn more in the show notes or by going to www.myarthritislife.net. You can also connect with me on my social media accounts on Instagram, Facebook. Twitter and even TikTok. Check out the links in the show notes.

Thank you so much for listening to another episode of the Arthritis Life podcast. This episode is brought to you by Rheum to THRIVE, an educational program I created from scratch to help you go from overwhelmed to confident, supported, and connected in a matter of weeks. You can go through the prerecorded course on your own, or you can take the course along with a support group. Learn more at the link of my show notes, or you can always go to www.myarthritislife.net. And if you like this podcast, I would be so honored if you took the time to rate and review it. I also encourage you to share it with anyone you know who might benefit from it. 

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