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Patient Stories, Podcast, rheum to thrive

Advocacy, Mindset and More: Chrissy’s Rheumatoid Arthritis Journey

6 days ago
80 min read
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Summary:

In episode 154 of The Arthritis Life Podcast, Chrissy shares her journey from the frustration of diagnostic delays to finally receiving a diagnosis of rheumatoid arthritis (RA). She opens up about how she’s come to terms with her condition and embraced her new role as a patient advocate.

Chrissy recounts the challenges she faced seeking medical care for persistent swelling and joint pain. Despite visiting multiple doctors, she was repeatedly told she “wasn’t sick” before ultimately receiving her RA diagnosis. She reflects on the mix of emotions she felt—relief at finally having a treatment plan and the hope it brought, alongside fears about the long term implications of a progressive disease like RA.

Chrissy also dives into the importance of mindset. She explains how maintaining a positive outlook helps her navigate life with RA, while being careful to steer clear of the pitfalls of “toxic positivity.”

Her diagnosis, while life-changing, also brought unexpected opportunities. Chrissy discusses how it inspired her advocacy and fundraising efforts, including an incredible bike ride from San Francisco to Los Angeles to support the Arthritis Foundation.

This heartfelt conversation between Cheryl and Chrissy is a reminder that, even with a chronic illness diagnosis, it’s possible to thrive and find purpose in new and meaningful ways.

Episode at a glance:

  • Chrissy’s Journey to Diagnosis: From frustrating delays to finally being diagnosed with rheumatoid arthritis (RA).
  • Emotional Ups and Downs: The relief of finding a treatment plan and the challenges of accepting life with a chronic illness.
  • Mindset Matters: Balancing positivity while avoiding the pitfalls of “toxic positivity.”
  • Advocacy in Action: How Chrissy turned her diagnosis into a mission, including fundraising for the Arthritis Foundation.
  • Inspiring Adventures: Chrissy’s empowering bike ride from San Francisco to Los Angeles to support RA awareness.
  • Finding Purpose and Adapting: Cheryl and Chrissy discuss thriving, adapting and finding purpose after an RA diagnosis.

Medical disclaimer: 

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

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Chrissy Livergood

Chrissy is a rheumatoid arthritis patient, diagnosed in 2021, although she has had symptoms of RA for as long as she can remember. She is a volunteer with the Arthritis Foundation as a Connect Group facilitator, Arthritis Ambassador, and California Coast Classic rider and fundraiser. Chrissy is a 2024 graduate of the Rheum to Thrive course and a current participant in the alumni group. She is a huge sports fan, especially of the St. Louis Cardinals and her alma mater the University of Illinois, and is a Swiftie who loves landscape photography, cooking, cycling, swimming, and hiking. She shares a puggle, Wilbur, with husband Eric.

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:

Full Episode Transcript:

[00:00:00] Cheryl:

I am so excited today to have Chrissy Livergood on the Arthritis Life Podcast. Wait, did I pronounce your last name right? 

[00:00:07] Chrissy:

Yes. 

[00:00:07] Cheryl:

Okay, good. Sorry, I forgot. 

[00:00:09] Chrissy:

It’s just like it looks. 

[00:00:10] Cheryl:

Okay. Perfect. Perfect. This is funny. I’ve known you a while, but for some reason I never had to say your last name out loud. So, welcome. And can you share with the audience where do you live and what is your relationship to arthritis?  

[00:00:23] Chrissy:

Yeah. Thanks for having me. I’m very excited to talk today. So, that’s like kind of a loaded question. I’m talking to you from Central New York. I spend some of my time here in Syracuse. And then, I also spend part of my year in Los Angeles and Yosemite National Park. So, I drive a lot. And this is just for like family, work, et cetera. And my connection to arthritis is I have rheumatoid arthritis, seronegative. I was diagnosed in February of 2021, but I suspect I have — I have memories of symptoms, like, literally as long as I can remember. So, I think, and I think we’ll get into this a little later, the diagnosis journey, but I think it’s probably going to be familiar to lots of people.

[00:01:22] Cheryl:

Yeah. 

[00:01:23] Chrissy:

Years and years of finding a diagnosis. 

[00:01:26] Cheryl:

Absolutely. It is really hard to even pinpoint when did you, if you’ve lived with pain for a long time, like then when did it become this like clinical, you know, diagnosis. And actually, yeah, let’s go straight into that. You know, what is your diagnosis, you know, journey/saga, as it often is.

[00:01:46] Chrissy:

Yeah. Definitely a saga. So, I guess, you know, kind of going back as long as I can remember, I was like the kid who couldn’t run the mile in grade school. There was just like always something wrong with my knees. I remember, I went to my pediatrician, you know, as a grade schooler and they said it was patellofemoral syndrome. That was kind of the word of the day. And that was it. And it was kind of like, well, that’s what it is. Can’t do anything about it. And that’s just what it was. 

I was always pretty active and ended up being a pretty serious swimmer because it was like the thing that didn’t bother my joints. And after I graduated high school, tried to do a little bit of more like athletic stuff in college, but really post undergrad, tried to be a little more active and participate in sports that weren’t just swimming. And I was always hurt. Always, always, always hurt. I saw like dozens, literally dozens of orthopedic doctors. ‘Cause that’s who I thought you went to if your joints hurt. And it was, I had problems with my knees, my ankles, my shoulders, my elbows, kind of all of your major joints. And it was always like, we’ll do some X-rays, maybe we’ll do an MRI, maybe we’ll do a cortisone shot. But the familiar, like, “Sorry, my diagnostic doesn’t show anything. I can’t really do anything for you.” 

And I was getting so fed up because I’m like, I know something’s wrong. I know something is wrong with my body but no one can tell me what. And, you know, I was like, well, the doctor has their diagnostic and nothing is showing up on there. Like, what are they supposed to do? So, I really felt at a dead end and went through that process of like, is it in my head? But like, it’s not. ‘Cause I can see, I can see the swelling. I can see that I can’t bend my knee. Like, I am having very clear physical signs, but no one knows what to do. And then, I, like — date burned in my brain — I had a pretty bad flare the summer of 2020. 

I went on like a really, really like low key walk outside and my knees just like exploded. And then, you know, it kind of subsided after a couple of weeks. And I thought, well, this is just how my body is, I guess. February 19th, 2021, I went for a walk at the beach, like nothing out of the ordinary, nothing extreme. And my left knee swelled up a ton. And later that day, I hopped on a Peloton, like just hopped on the bike to like move around a little more. This was still like pretty COVID-y so they couldn’t like do a lot. And I was pretty bored. So, like, hopped on the bike and my knee just got worse and worse and worse to the point where it was like twice the size of my other leg. I couldn’t move around the house at all. And I was just furious. Like, I can not go to another doctor. I can not have someone tell me again, like, even more than the pain was like, I can’t emotionally go through being told again that nothing’s wrong.

And my sister-in-law asked if I had ever gone to a rheumatologist. And I was like, I don’t even know what that is. So, no. And ‘cause, you know, this was just like, there’s no like family history or anything. I didn’t know anybody who had like an inflammatory arthritis condition. So, rheumatologist was not my vocabulary. And I was, I was so angry. Like, I was so frustrated with everyone telling me like, “Oh, just go see a doctor.” ‘Cause I’m like, it’s not just go see a doctor. It’s go see a doctor and then be crushed. And I was so furious and I was like, fine. And I just called, I Googled the closest rheumatologist in my house and called them. And I was so angry already. And I remember the receptionist being like, do you know you’re calling a rheumatologist? Because I didn’t, I didn’t have the words. I didn’t know how to vocalize like, I’m having this problem. Someone suggested I see this type of doctor who turned out to be a really lovely person. But it was just like, I was already so activated that that question, like, I mean, I was just like, give me an appointment. 

So, made the appointment, because it was still pretty COVID-y and you’re talking about like, immunocompromised patients. There was a couple of telehealth appointments. And I went to get blood work and then had an in-person appointment to discuss the blood work and I had like probably one of the biggest meltdowns of my life when my doctor was like, “I know what’s wrong and I know how to treat it and we’re going to take care of you.” And I was just hysterical, completely hysterical. He handed me a tissue at the office, and that was that. So.

[00:07:15] Cheryl:

Were you crying with like relief? 

[00:07:17] Chrissy:
 Yeah. Yeah. It was like, finally, there is some confirmation and validation that it’s not in my head. I’m so relieved I don’t have to go through this process again of another dead end. And it’s like, okay, we finally have something to work with. And yeah, it’s just a relief of like, I’m not, I’m not super big on like diagnosis labels. I would say, like, I kind of don’t care what it is. I care that we have a plan to deal with the symptoms and the underlying conditions. So, I was kind of like, I don’t care. Just, like, help me. 

[00:08:12] Cheryl:

You’re — no, and we’ve talked about that. Well, the foreshadow. Well, we’ve talked about that in this, in this group before, but yeah, I love that distinction. There is a big difference between — there is, for me, at least, there’s a validation of having a label for something when you’ve been told by so many doctors that it’s nothing, that you’re just, you just need to tough it out and just exercise more or whatever.

[00:08:33] Chrissy:

It was, it was rest, actually, and I was already, I was like, how can I rest from rest? Like, I’m already so hurt I can’t do anything, like, rest doesn’t exist in my environment anymore. That’s all I’m doing. 

[00:08:47] Cheryl:

You’re already resting. So, that’s obviously not healing, not helpful. And then, there’s the relief of a treatment plan because they are two separate things. Like, I mean, just a quick example from my life of something that’s one and not the other would be when I got diagnosed with gastroparesis, which was, like, extremely validating, this was in 2003, that I wasn’t, you know, I’ve been told, was told that I was just faking an eating disorder and stuff like that. And I was like, no, something’s wrong with my stomach. Like, I’m trying to eat. I want to have a giant ice cream cone, but my stomach is, like, not digesting it. You just think it is not digesting, but then they did a gastric emptying scan, they’re like, oh, your stomach, by the way, your stomach is not digesting. 

I’m like, yeah, that’s what it felt like. I know, thanks. But they were like, there aren’t that many treatments at that time. I know it’s changed now. And whereas the RA, also diagnosed in 2003, was like, we know what it is. And there’s treatments that work. So, you have like two buckets filled of hope, you know. And the most important one, like you said, long-term, the most important one is having a treatment plan or having the hope that something will reduce your symptoms. And I’m just, just take a moment, I want to take a quick moment to say, you know, I’m just, I’m so sorry that with all that you had, actually, it wasn’t just invisible symptoms like pain, you had swelling in multiple joints. Like, that’s like a huge flag for any medical provider to say it’s not an injury if it’s multiple joint swelling. 

[00:10:13] Chrissy:

Right? And that’s, it’s really strange because I saw so many doctors and had so, like, it was always multiple joints. And I’m really surprised, and I mean, I saw doctors in New York, California, Atlanta, like, no one ever caught that. No one ever suggested maybe there’s something going on. So, it kind of strange in that way. And I’m like pretty textbook, you know, I didn’t know anything about RA, but my doctor’s like, are you stiff in the morning? I was like, as a matter of fact. I am, you know, like I’m not like a special case. So, I am a little bit surprised that so many people didn’t make further suggestions, I guess. 

[00:11:07] Cheryl:

Yeah. Yeah. I think it’s, it’s really a shame. And, you know, I mean, it also reminds me of just the randomness of life and that what if your sister-in-law hadn’t suggested a rheumatologist, like how much longer would you have had to suffer? I mean, at that point when it’s so clearly inflammatory arthritis, like for those listening who might not know a lot about this stuff, you know, inflammatory arthritis is like a synonymous with like autoimmune kinds of arthritis, like rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis. And the longer you wait for treatment, the more likely you are to have irreversible joint damage. You know, at this point in 2025, joint damage is considered irreversible. So, you know, it’s really a matter of, it’s a very urgent matter, yet it’s being missed in a lot of people. 

So, you know, if you’re listening to this and you have bilateral joint pain, meaning both sides of the body, especially the little joints of your fingers and toes, or like the distal joints, and especially worse in the morning with the pattern of getting better with activity, and or visible swelling in multiple joints, those are all, especially if you’re Caucasian, it’s often looks pink or red, you know, depending on your skin tone, you can feel, sometimes you can actually feel it, feel heat on your joints, especially the knuckles. Those are all big, like you said, textbook things. So, you know, I’m sorry you had such a delay in your diagnosis. But once you got the diagnosis, what have been some of the highlights and lowlights of your treatment journey? 

[00:12:36] Chrissy:

They said it would just be simple.

[00:12:37] Cheryl:

Was it simple? Because sometimes it is. Other times it’s not. 

[00:12:40] Chrissy:

I think that I have had a pretty simple path, just from hearing so many other people’s stories. I was immediately put on methotrexate. I had done a couple rounds of, like, meloxicam, diclofenac, like those kinds of anti-inflammatory things. But once we had like some blood work to show, okay, mine was, being HLA-B27 positive, in addition to all these other like symptoms and things like that. And then, very, you know, the high CRP, ESR, all of your classic blood markers. So, putting all that together, then immediately went on methotrexate and failed that. And my doctor recommended I start an infusion. 

And I have a history, I have a pretty strong vasovagal response to needles, which is basically like I have no fear of needles at all. Like, stick me all day long. But my body has like a physiological reaction where I just like pass out. And, I have since learned, this is like one of my best tips, if I can recline, even if it isn’t fully laying down, even just like slumping in a chair, vasovagals, I guess your, like, your blood pressure drops. And so, that’s why I would like faint. If I can recline a little bit, it keeps like the blood moving and you don’t have that blood pressure drop. But I didn’t know that yet. 


So, my doctor is telling me, you know, we should start this infusion. And I put it off for, several months, like probably it was probably three to six months. And finally, I was like, I just got to bite the bullet because like, clearly my symptoms are still here. And I also was like, I was a little hesitant to go straight to infusions because I heard so many people, you know, I’m like still what I would consider newly diagnosed like a year in. And so, many people do injectables. or you like fail that and then go to infusion. I always had the impression that infusions were like a little more extreme or a little more like you’ve tried all these other things like last resort kind of thing. I don’t think that’s actually true. No, that’s just the impression that I had. 

[00:15:10] Cheryl:

And you’re not alone. I will just take a quick, brief educational moment because I didn’t realize this was such a prevalent assumption people made. It does, on some kind of gut level, it feels like taking a medication is, like an oral medication is like the less extreme. An injection is the next bump up. And infusion is the next. But it’s in rheumatology that is not the case at all. You know, I’m on Xeljanz right now, which is an oral tablet. It’s way more down the line of treatments, meaning it’s one that you have to fail other, many other things to go on, and it has more risk factors for side effects than an infusion, for example, of like Remicade. Like, Remicade, which is infusion, Humira, which is an injection, and Enbrel, which is an injection, are all three very similar, you know, TNF-inhibitor medications with similar side effect profiles. Doesn’t matter that one of them is an infusion that takes like four hours versus injections.

So, just if anyone listening, and you also can take — and there’s multiple medications you can take via either infusion or injection or via oral or injection, like methotrexate being the best example of, you know, you can take oral tablets or an injection. So, long story short, the method of getting the medication in your system does not necessarily reflect the severity of the potential impact on your immune system and such. But it’s a very common, assumption people make that I probably made too, you know, before I experienced all this stuff. 

[00:16:42] Chrissy:

Yeah. So, a couple of things on that. I do a Simponi Aria infusion, I guess there’s a Simponi injectable. And I do, I don’t know this for sure, but I’m definitely on the heavier end and I know like when you do an IV infusion, you can like adjust — it’s weight based. And so, I do wonder if that’s figured into going to the infusion just because I could like be treated a little more precisely. The other thing — and I, I’m sorry, I can’t remember if this is on your podcast or something somewhere else I heard it, but I think this is actually one thing that helped me move on with the infusion. I heard someone say, like, when you take a pill, like, we take pills for all kinds of things, that’s just kind of like normal life. When you have to go sit in a chair and get an IV put in and everything, like, that is really, like, you know you’re sick. And coming to terms with that is really difficult. Like, you’re really facing like, okay, there’s something major going on here. And even with the injectable, like, we get — I mean, I, at least, got a lot of vaccines growing up and things like that. So, like, even having a shot is a little bit different. I’ve had, I think, two IVs in my lifetime before starting the infusions. So, that was a big sort of like, I don’t think I had processed that, but hearing that really helped me like, okay, this is like a scary thing and that’s okay. It’s something to face now. 

And yeah, I will say I am, my infusion experience has been very good. I, you know, we started talking about like, I’m all over the place. I’m in the car all the time. I’m traveling all the time, which makes just getting my regular, like, prescriptions difficult. I think that trying to get specialty medication that needs to be refrigerated in different places on different timelines for me would be kind of a nightmare. I’ve heard, I know at least one doctor was like, “Oh, you’re young,” you’re what she called a walkie talkie, “We prefer to put you on injectables.” And I was like, that just doesn’t fit with my — like, it is so nice. Every eight weeks, I go see my rheumatologist. I walk down the hall, I sit down in a chair and the greatest infusion nurse on earth who is just an absolute wizard places my IV that I don’t even feel half the time.  And I sit there, Simponi Aria is very quick infusion. I’m usually like 45 minutes I’m done. 

[00:19:38] Cheryl:

Oh, wow. 

[00:19:40] Chrissy:

Yeah. It’s great. So, and that’s like, you know, chair to door. So, yeah, it’s a quick one. So, like I just go take my iPad or watch whatever is on TV and I just sit there and I chill and that’s it. Like, I don’t have to, I don’t have to like psych myself up to self-inject. I don’t have to worry about the injectables. So, like everybody obviously has a lot of variables that go into what they and their doctor choose for their treatment, but I have had a very good experience with the infusions, it just took me a while to sort of like accept that that’s what I was going to do.

[00:20:23] Cheryl:

Yeah, no, I’m really glad you’re bringing this up. I don’t think anyone on this podcast has talked about it in this level of detail yet, about the kind of mentality around the different kinds of mechanisms of delivery for the medications. But I think it’s really, it’s really important. And I also found, you know, somebody who traveled a lot. When I was living in California for grad school, I was flying back and forth between Seattle and California a lot to do like family stuff. And I also, I was on a Remicade every six weeks at the time, and I found the infusion was so much easier than the — refrigeration part of the injection was always the hard part. And also, the — you’re right.

Having the, having to, when you have an injectable medication, you have, or any other medication other than infusion based, you need to deal with the specialty pharmacies directly yourself, whereas at least in my, in both Seattle where I’ve received infusions and California, in those medical centers, you get like ‘admitted’, quote unquote, to the facility. At least that’s how they deal with it. Like, at a hospital, like the name tag. And both the hospital, this is where they gave me the infusions, or medical clinics, and they wouldn’t — they deal with all the ordering and the medications physically once you get there. And that’s what’s — and so, it’s just different than having to talk on the phone to like all yourself. And they do this all the time. Yeah. 

[00:21:45] Chrissy:

Mine is in my rheumatologists. 

[00:21:49] Cheryl:

That’s really nice. 

[00:21:50] Chrissy:

Like, he runs an infusion center. So, I like literally walk 10 feet and, you know, it’s all there. So, it’s very convenient. Yeah, for sure. I don’t have to go to a hospital. I don’t have to do the, you know, admissions piece. Like, I do have a very good setup. I’m very, I love my rheumatologist and I can’t believe — sometimes I’m like, I went through decades of all of this garbage to call the first guy on the list, and like, the Universe is like, okay, we’ll keep you in line. 

[00:22:28] Cheryl:

No, I, that is so funny. I feel the same. Like, my, everyone’s like, how did you find your rheumatologist? She sounds amazing. She’s like a magical unicorn. Like, how did you, you must’ve had to like go through so many to find her. I was like, nope. She’s the one that my primary care was like, see someone at this clinic. And I was like, probably my mom called and was like 2003 and I was like totally at that point so wasted away and really sick that she probably was one that called and they were just like who has the first available appointment, you know, drop fate into my lap this amazing doctor, you know. And so, yeah, I think that was your karma though. Let’s just choose to believe that. 

And you know, I also really love that you have talked, like, you meant you — I wonder if we have that in a podcast about before is like that denial, emotional denial, that you’re really a sick person or you have a sickness or an illness is your brain’s attempt to protect yourself, right. So, it’s a short-term adaptive response that is not helpful long-term. And so, you’re right that when you have this invisible condition. It’s not like you have a huge cast on your arm or something that you had, like, reminds you constantly. Then when you have to do something physical, like give yourself an injection or go and get an infusion, which on an emotional gut level feels more like you’re a sick person than an injection, it is, it’s hard. 

You have to actually confront, yeah, I, this is happening. Like, almost like a watch what you wish for, you might get it. Like, all I want is a diagnosis and someone to tell me that there’s a treatment plan. And then, you’re like, wait, this treatment plan means I’m really sick. Like, yeah. Yeah. Like, how did you cope with or come to terms with all of those like swirling emotions? 

[00:24:12] Chrissy:

I mean, I think some of it realistically was just like, you know, to use the sort of cliche term of like sick and tired of being sick and tired. I’m just like, I’m so fed up with this. Like, fine, give me whatever, like, let’s do this because I need to move on. I need to see improvement. I do think, like, I am a pretty big believer in just like mindset in general and some like, okay, it’s going to be fine. Like, this is what your doctor said to do. You trust this person. You know, we had a relationship at that point. Like, this is what he’s telling you to do. Like, it’s what you got to do. I can’t do anything about having RA. Like, it just is. And so, the sooner I can try to accept that on whatever level I can at that moment is like what I got to do to get on with life, because just sort of like giving up wasn’t an option. 

And so, I think it was just, it was like kind of forced and kind of a choice of, like, this is your life. This is what we’re doing. So, let’s go do it. And the first one was terrifying. I mean, even methotrexate. I cannot tell you, I remember sitting on the side of my bed, terrified. Like, I was so scared to take these pills. And I sat there for, for like, I don’t know, probably a good 30 to 60 minutes. I was, at the time, like I was up in Yosemite and my husband was down in LA and I’m texting him, like, “Oh, I’m going to die.” You know, like pretty dramatic. And now like, I took my methotrexate last night. Like, I don’t even think about it, just pop the pills. But the first time is super scary. And so, like, I think going — having the experience with the methotrexate of like, and I definitely had side effects and things, but like, it’s okay. So, like, okay, I did this once I can do this again. It’s a little bit of a different situation, but I think like getting you through that first one, being like, it’s okay. Like, you did it. 

It’s, you know, I think sometimes the anxiety and anticipation and all that is so much worse than just going to do it. And so, like getting over that initial thing was like, okay, I can do this. Great. We did it once. We can do it again. It wasn’t so bad. I do have this like incredible nurse who I will say like, again, I just got lucky. This person is incredibly good at what she does. And so, that really makes the experience easier too, but it’s like you have to confront it and you have to go through it. And that’s just my philosophy, I guess. 

[00:27:18] Cheryl:

Yeah. Yeah. It’s a very practical mindset. And when you were talking about the anxiety prior to the injection or the infusion and the oral tablets, it reminded me of like the difference between fear and anxiety, right? Anxiety is something bad can happen. Something, like, it’s very vague and nonspecific, a sense of dread, versus fear is about something specific. So, I’m afraid that methotrexate will make me nauseous. I’m afraid that, blah, blah, blah. And so, in a way, like, you know, the only way to get out of anxiety and into the fear state is to actually do the thing that you’re scared of. Like, because I’m like, okay, well, something bad can happen when I take these medications. Well, then, once you take them, then you’re gonna know what the bad thing potentially is. Or, you can know what the good thing is, you know?

[00:28:01] Chrissy:

Yeah, and that’s like, you know, we always do that. Well, I don’t like to speak in absolutes, but we frequently do this of like, you see the scary side effects and you’re like, oh, well, that’s the thing I’m focused on instead of like all these people who have a great experience with methotrexate and are very successful on it. And that, you know, a medical professional has said that the benefits outweigh the risk, but we just get so tunnel vision on all this stuff. And I will also say before I took my first first methotrexate dose, I listened to, I think there were like seven people on, it’s a really old episode of the podcast, but like what it’s like to take methotrexate. And that was really helpful of like hearing people who, you know, kind of across the board who, you know, took it or stopped taking it or, you know, things are good, things are bad. Like, all of the experiences kind of wrapped up into that one episode was really helpful. 

[00:29:03] Cheryl:

No, I’m so glad. I’m going to put a link to that episode. And I did a couple follow ups to it, like, what’s it like to take methotrexate for rheumatoid arthritis in similar conditions? And then, the follow up was like, what’s it like to still be taking methotrexate? Because when we did like a year follow up, you could see that there are changes, right? Sometimes you titrate up or down. But you know, honestly, like, yeah, I joke sometimes I’m like an accidental methotrexate influencer, which was not at all my intention when I first did like videos. I also have done videos of myself giving myself my injection. And it’s just, it’s great because you know social media or, you know, YouTube, stuff like that, it’ll tell you what people are interested. People will tell you what they like and what they’re interested in.

I’m sitting here thinking I’m giving you this video of me injecting my methotrexate to like a just show you what it’s like, thinking that people might just want to see a real patient doing it, not realizing that the manner in which I was doing it so casually because it’s such not a big deal to me anymore after 20 years of injecting, they were like, “Wait, you seem kind of like neutral to like happy about doing this. Like, aren’t you scared? Aren’t you, aren’t you feeling horrible because of all the side effects?” I’m like, no, like those are not guarantees. Side effects are potential. And it’s this really, it’s really, it’s sad to me how it, it’s just, unfortunately, the intention of informed consent is obviously extremely noble. We should all be informed of the potential risks of any choices, but it’s become so, in my opinion, the fact that you are presenting and communicating to patients almost like exclusively all the worst things that can happen while not counterbalancing that with giving them a sense of what’s the most likely, because I have to tell you every possible side effect that could maybe happen.

So, you look, the majority of the times people feel, hey’re not, they don’t feel so crappy that they stop the medication. X percent of people do. X percent of people, we don’t know why, really feel nauseous, or really feel fatigued, and they have to stop the medication, and that’s that context. X number of people have avoided permanent joint damage and deformity due to this disease ‘cause of this medication. Like, that would be my dream world in which you kind of present everything in a way in which it has the context around it versus just a giant laundry list of only the worst things that could happen. So. 

[00:31:22] Chrissy:

Yeah, I think this is like a little bit, this is a tangent, but, you know, if at some point I was able to give the medical establishments feedback, I think there’s this sort of like assumption that we take everything on blind faith. And so, like, okay, the doctor said, “Do this.” Yes. We have to hear about the side effects, but like, we’re just going to somehow magically know what you just said. Like, okay, but all of these people feel better. And there’s just like this, I don’t have a better term than like blind faith that we will just know and accept that somebody said this. I love data. So, I would love to, you know, have some more like statistics around it. But I do feel like that’s, you know, you go in and someone’s like, “Okay, do this.” And they walk out. And there’s no, there’s nothing else.

And then, you get to the pharmacy and they’re like, you know, when I first started taking methotrexate, I was also taking another medication that is, you’re not supposed to take them together. And my doctor was like, “They are going to pull you aside at the pharmacy and they’re going to tell you, you can’t do this. I’m telling you to do it,” which made my situation a little scarier. I also, that’s, I’m not sure that my situation is unique given what the medications are, like, I don’t really want to talk about it ‘cause I don’t want to give anybody ideas. But, you know, I really appreciated that because they did it, at the pharmacy. They were like, “You can’t do this.” 

And so, you know, we’re kind of just like left with the doctor walking out the door and then the scary stuff and the medications and like no communication about like, this is why you’re taking it. This is what could happen. Like, there’s never even discussion about like, what, like, what is a DMARD? What is an anti-TNF —? Like, we were totally left to self-educate. And I think just like 30 seconds of like, “I’m prescribing this because it can do,” that would be like really helpful to a lot of people. I think it would be helpful to me. 

[00:33:52] Cheryl:

Well, you’re perfectly segueing into why I developed my own educational program. Exactly that. Because it’s not happening for whatever reasons in the doctor’s office. And also, it’s, even when it is happening, when the doctor takes that time to explain to you the medications, that’s one sliver, not a sliver, that’s an important foundation of your treatment. But when it comes to self-managing your condition on a daily basis, there’s so many other things you could be doing. I mean, you know I’m the first person to get medication, it’s a cornerstone of the treatment. And you can do other things like exercise, we can do pain management tools at home, and there’s very little guidance ever given on joint protection, all these things that I learned about in occupational therapy school.

So, long story short, that’s why I made — and there’s also the emotional part, giving people guidance, access to support, and tools to cope with that. So, I did, you know, when I first started the Rheum to THRIVE course as like an educational program, I actually didn’t have information about the medications because I thought, well, this is the low hanging fruit that of course is gonna be — because it had been talked about on media, or they can Google it, but it’s like, no, but even if you Google it, you get a bunch of misinformation. So, people also need some like curation of that information. But yeah, even just, yeah. Even someone like you, who’s like, so, you know, like you’re very driven, you know, you’re good at doing your research. You’re very equipped at it. You’re still feeling left in the lurch. I mean, you know, what about people who don’t have any sort of education or training and don’t understand how to make sense of any of this? You know, a lot of times they just don’t. 

[00:35:27] Chrissy:

And I do have a great doctor and I can ask a lot of questions and be like, what does this do? And he’ll, at one time we were, like, I was sitting in the chair in the exam room and then there’s like the exam table and he was like drawing diagrams on the, you know, like paper protection thing and stuff. Like, I have a great doctor who will do that. And I’m still like, what? You know, there is so much. And like, I don’t, I don’t really blame the doctors. Like, they don’t have to, they have so much other stuff they have to deal with in the system that like, fine, I get it. But I think the patients are just like really out here, like, holding on to the life preserver in the middle of the ocean. 

[00:36:09] Cheryl:

Oh, my God. A hundred, a hundred percent. And, you know, when you get diagnosed with — this is one of my other talking soapbox points is that you get diagnosed with gesta — when I got diagnosed with gestational diabetes, which is an autoimmune, you know, thing, like type 1 diabetes, it was like, oh, here’s your certified diabetes educator. Like, you’re gonna have an appointment with her once a week. And like, oh, that makes so much sense. Like, she’s gonna walk you through how are you gonna self-manage this, how are you gonna alter your diet, you know. I mean, it makes — I always say for, for balance, the fact is that if you don’t manage diabetes or gestational diabetes correctly, you could, we’re literally talking life threatening. So, I mean, the stakes are higher, I think, in terms of life or death, but I would also argue long-term, rheumatoid arthritis, if uncontrolled, takes seven years off of your life on average, if uncontrolled. So, it is life threatening in the long run.

[00:37:05] Chrissy:

Like, these are the things that again I just don’t think that patients are really educated on like the cardiovascular risks, the diabetes risk, like all of this is heightened with an inflammatory arthritis diagnosis. And like again, I have a great doctor who he’ll look at my lipids, like my glucose is measured every time, I have it every week. It’s like, he’s watching all these things. I’m pretty sure that not all rheumatologists are looking at anything other than your joints. So, and again, that’s, I’ve had one doctor ever, so I don’t want to speak like out of turn, but my impression from talking to other people is that not everyone is so thorough. And I’m like, cardiovascular disease is already like such a problem. And then, we’re already like, have these additional things lumped on top and like, oh, just don’t even talk about them. Like, that’s a major thing. Like, Yeah, my knee hurts, but like, my heart is important, too. 

[00:38:15] Cheryl:

And that’s, no, that, and that cardiovascular comorbidity is why the theory is when rheumatoid arthritis is uncontrolled, that inflammation doesn’t just stay in the joints, it goes throughout the whole body, and it affects the heart and lungs, and so we’re more likely to have stroke or heart attack. And so, that, I will put links in the show notes just to back that up, that we’re not just like blowing smoke. We’re talking about actual, you know, data. 

[00:38:40] Chrissy:

Yeah, not trying to fear monger, but like, yeah, no, it’s just so much that we’re, like, nobody talks about at all. It’s, you know, it’s in my experience at the doctor’s office. 

[00:38:53] Cheryl:

Even with an amazing doctor. And even if, you know, and yeah, the — how did you find my program, by the way? Sorry, probably asked you this earlier, but. 

[00:39:02] Chrissy:

I think that, so I, for better or worse, I’m a pretty heavy social media user. And so, I think once I had a diagnosis, I was like, oh, okay. I mean, there are, I said earlier, I don’t care what it’s called, but there’s value in having a name. And so, all of a sudden, I was like, okay, again, now I have something to work with. And because I didn’t know a single other person — I do now — but I didn’t know anybody who had anything like that. Like, I was alone. And I was like, well, I guess it’s time to fire up the old Instagram, you know? And, I think it was probably just from like searching hashtags or something, but I immediately found the podcast. 

And then, I think just from like being in the Cheryl universe, heard about the course, and was like, okay, this is — again, I took the course, like, maybe two or three years into my diagnosis. Like, I wouldn’t say I was newly diagnosed, like super fresh at that point, but like two years, I still don’t know anything. And I was like, okay, this is, this is definitely something that I need to do that I think I just saw on social media. And, really like a lot of the topics, are things again, like you said, like the whole point is that it’s stuff we don’t learn. So, it was like, I don’t know anything about, I guess there was a lot of terminology that I hadn’t run into, which became even more important in the course. 

Like, one of the biggest things that I learned in the course was the term ‘dynamic disability’. Like, that is another thing of like talking about having a name for something. Like that, for some reason, that term just really struck a chord with me about like, I don’t know what’s going to happen when I wake up in the morning. Like, some days I’m great. I’m normal. I’m fine. There are some days I wake up and I’m like, wipe it off the calendar. Like, I can’t get out of bed today. And you have no way of predicting this. Like, there’s no pattern for me. 

And so, that dynamic word was like so important for me to hear from other people who are experiencing it to learn, like, okay, there there’s a word we can put to, like, I just don’t feel good sometimes. Like, learning about so many of the, like, tools for putting together your care team, like what the options are. I mean, you, we were talking about this at the beginning, like I saw all these orthopedic doctors, but I didn’t know a rheumatologist was who I needed. Like, going through, like, here are the people that could help you. Like, I hadn’t heard of some of the people on that list, you know, years into diagnosis. 

[00:42:21] Cheryl:

Me either. That’s why I put it all together. Yeah, like physiatrist, physical medicine, rehab doctor, different than a podiatrist, that’s different than a social worker, counselors, psychiatrist, you know, there’s so many nutritionists, you know, different people that can help you with exercise, whether that’s an occupational therapist, physical therapist, hand therapist, trainer, so many.

[00:42:41] Chrissy:

And I think the community aspect was a big one too, because like, that’s why I went to social media in the first place was to find other people. And so, seeing the course, like, okay, here’s like study material that’s like technically sound, but then there’s a group of people who I can go talk to who understand what I’m doing. I have a really good support system. My parents are incredibly supportive. My husband is like, I’d give them an award or something. But they don’t get it. Like, no matter how hard they try, like they will never understand what it’s like to be in my body. And so, having the educational component, but also being able to go talk to people who actually understand. And I don’t have to explain all day. And I don’t have to give disclaimer. I can just talk about my experience. Very valuable. 

[00:43:36] Cheryl:

Yeah. That’s, yeah, you just hit the nail on the head. I’m just, that is exactly why, what I’m hoping people get out of the experience. It really is, you know, and I think a lot of times people with chronic illness, you know, we are on social media, often talk about the people who just don’t get it. And I think there’s really a lot of different buckets of people who don’t get it. There’s the low hanging or the most obvious one is people who are like mean people who are like, “You’re not sick. You’re just —” you know, but then there’s this giant group of people who desperately want to get it, but who actually, despite as much as they can try, they can’t get it. 

Like, and the analogy I tried, I use that — I don’t know how helpful this is other people. It’s like, you know, me as a Caucasian woman, I can, I need to, and I will, and I do put the work in to try to empathize and imagine what it’s like to be Black or Brown in this country, and I could talk with people all day long and think about it and imagine. But I will never truly understand in that same way with a chronic illness chronic pain — I mean on some level we will never completely understand exactly what it’s like to live in your body but we do have this shared experience of dynamic disability, of waking up one day with a body that just feels foreign to you, or that experience of having to go through that learning curve of our condition and in our medications and having that heartbreaking experience of like a medication working and then maybe not working anymore. 

There’s just so much that only people who are in that group can really understand. So, I’m glad you found it. That’s why I’m trying to do a better job of how they found it. ‘Cause I’m like, I want to, that’s typically people say Instagram, like, and but it’s, I do want to give shout out to you and anyone else who participate in the group because, you know, not every — it takes a lot of courage to share your experience in a group setting with people you don’t initially know and to take the time and effort to learn about your condition. So, it is a testament to the group. A group is only as strong as the group members really too. So, yeah. 

[00:45:42] Chrissy:

Well, and you know, just to give you a little plug of making it a very inviting environment, like, I do — I think sometimes I have a little bit of a different approach to, I think I give doctors a lot of leeway, of like, you know, they’re — I’ve talked about this recently, but my take is medicine’s kind of, it’s like guessing. It’s like, what is the most, okay, you were presenting with these symptoms. Like, what is the most statistically, like, statistically likely probable outcome here? Like, we’re just guessing, right? And I think that we have like, through whatever mechanism, media or society or whatever word you want to use for it, we’ve been sort of, I think, conditioned to be like, you go to the doctor and they’re like, “Here, you’re fixed. Goodbye.” And it’s not that simple. And so, you know, I have some differing opinions, I think, than other people sometimes in these groups and feel very like empowered to share that. Like, I feel like I can still, like, I have a voice, even if it doesn’t necessarily fit with everybody else. And so, I appreciate that, that like, it is definitely welcome to like everyone’s opinions.

[00:47:01] Cheryl:

Yeah. It’s a very inclusive group. I mean, there’s people in there who, you know, who are taking totally different treatment paths, you know, but we’re all there to support each other. And, you know, there’s really just two main ground rules are respect and confidentiality, you know. And as long as we have an environment of respect, we can have a lot, there’s a lot of different ways to manage these conditions. And, you know, if you — a lot of times people feel like judged for how they’re managing their condition. We try to say, you know, this is a safe space for anyone to share what they’re doing and what’s going well, what’s not going well, you know, so I’m glad you feel —

[00:47:40] Chrissy:

Yeah, I can confirm that. Like I, even when I have like differing opinions and I’m sure, like you said, there are so many different ways that people approach their situation, but people show up and people share. And I think it’s because there is a very, like, you know, respectful group and like a level of trust that like, it’s safe to share your opinion or what your choices are or what you’re doing. 

[00:48:13] Cheryl:

Yeah. Yeah. And, you know, one of the things I’ve been thinking, reflecting back a lot on when I created the program, I did like a little episode before, or a few weeks ago on like the origin story of how I created, you know, Rheum to THRIVE. And one of the things that I really — I’m still, to be totally frank, working on is finding a balance between wanting to focus on the positive and the not toxic, but avoid toxic positivity. You put this into words before we started talking, not in regards to my program, but just in terms of your outlook in general. 

And I was like, that’s so resonant with what I’m always thinking about, which is how do I say, okay, we’re going to have an environment where it’s safe and open to share the difficult things you’re going through and also make time and space to focus on what can I still do? It’s like one of the core tenets of ACT, Acceptance and Commitment Therapy, is what can I still do that’s valuable or meaningful within the confines of our situation? So, no matter how hard life is right now, it’s like, we’re not in a coma. We have choices and where to put our time and energy. So, you know, how have you struck that balance of, you know, having maybe a positive mindset or whatever you want to call it, while avoiding toxic positivity? 

[00:49:29] Chrissy:

So, like I mentioned this before, but I do think, you know, in some ways, like, I want to be careful here because I know like there are people that very legitimately struggle with a plethora of, you know, like, mental illness and other things where, like, you can’t always just put on a smile and everything’s okay. I have found a way to sort of like, okay, like, we are choosing to look for positives. And that has had to be an explicit choice for me. I am kind of like a worrier by nature. And so, it’s been like years I’ve been like, okay, what is the positive in this situation? But that is not to say I’m going to be delusional or ignore reality. 

And I think that with one of the, I think, like one of the very first things I ever heard immediately after being diagnosed, I believe, was on the podcast was you kind of have to be careful the spaces you put yourself in because it’s really easy, especially on the Internet, to just get in like a negativity spiral. You know, you join the wrong Facebook group and like the world is over. And so, that was like one of the very first things I heard post-diagnosis. And I was like, okay, this is what we’re going to do. We’re going to focus on the good stuff. And like, there will — this is my opinion — but there will always be bad with this. Like, this is a serious condition. Like, we’re taking serious drugs to treat it. Like, there’s a lot of doom and gloom that’s always going to be there. That’s not going to go away. Like, my RA is not going to disappear, at least with what we know now. 

So, like that’s going to be there no matter what. What can I do to sort of offset that? And what can I do to like make life go on? Like, when I, when all of this first happened back in February of 2021, I was like, I’m a really avid hiker. Like, I try to be active and I was like, what am I going to do? Like, life’s over. Like, I don’t want to live. I don’t want to do anything because this is, I can’t do anything ever again. You know, I just went straight down the very bad phase. And that was okay as long as I came out of it. And then, it was like, okay, hold on. Like, maybe things look different. But I can still do stuff like maybe I’m going for a walk instead of a run. Maybe I’m using resistance bands instead of barbells, but like there are ways to adapt. There are ways to still enjoy the things I want to enjoy. 

There are also really terrible days. And to sort of balance some of those, I’ve given myself like the ‘One day rule’ where if things are really bad, I’ll take the one day and like, if I can stay in bed and cry and be really angry and like do all the like wallowing I want for one day. And then, the next day you just try and try and do something to shift that. And that has been really helpful to, like, you know, feel the feelings and like allow those to be there. But trying to focus on what I can do and what, you know, like, there’s a lot of good. There are a lot of good people. There are a lot of things my body can do. There’s, you know, I’ve got a great husband and a great dog and, you know, there are sports to watch and things to cook and like all these things in the world that I can still do and trying to focus on those things. It takes some effort, but over time, that becomes the default. 

[00:53:54] Cheryl:

Yeah. 

[00:53:55] Chrissy:

Yeah. And I think, to touch on the toxic piece of it is just like, I don’t think that’s helpful. I think that can be very dismissive of your own or other people’s feelings. I think that it is a little —

[00:54:08] Cheryl:

What is toxic positivity in your definition, out of curiosity, just because I don’t know if everyone listening has heard that phrase.

[00:54:15] Chrissy:

I, to me, it’s sort of like ignoring reality. It’s like being — it’s if we’re on a continuum of like negative to positive, it’s like only living at this end of the extreme instead of like, there’s positivity all along here. 

[00:54:41] Cheryl:

Mm-hmm. 

[00:54:43] Chrissy:

But it’s just living here and it’s not acknowledging, like, there will be bad days, period. Like, with my body and the way that my disease is pretty well controlled right now, there will be bad days. Like, I’m kind of having one now. I usually don’t have a problem with my hands.  Today, I got the gloves on. I know these things are going to happen. I also know these things will pass. And so, instead of living down here where I’m like, everything is great, I actually — this is kind of funny. I posted something on my Instagram last night. It was like, one of my goals for this week is to take my medicine that it’s like my emergency. I’m having a flare. I’m having a lot of inflammation medicine. I hate taking pills. It was like, nope, this is what I need to do this week to take care of myself. I feel like I was living in toxic positivity. I’d be like, no, no, no. I can push through. Everything’s great. 

[00:55:36] Cheryl:

Everything’s going to be fine. It’s about to get better. 

[00:55:38] Chrissy:

Yeah. Yeah. Like, for me, that is not a healthy place to be. The healthy place for me is to be like, this sucks and I don’t want to do it, but I’m taking the pills because I’ll feel better. And that, to me, is a positive place. Of like, I’m doing something to take care of myself. I’m doing something to feel better. So, I don’t know if that example makes a lot of sense. But that’s a very relevant example of something I’m going through right now. 

[00:56:06] Cheryl:

Yeah, I think toxic positivity often in chronic illness communities or from the outside world applied to chronic illness as well, at least, at least it’s not cancer. At least, at least you still have blah, blah, blah, blah. At least you’re married. I have, ah, it’s like this stuff, it can lead into — also, well, okay, sorry. Actually, I just took it from toxic positivity to the suffering Olympics, which is another unhelpful thing. But the toxic positivity is, “Oh, well, you know, you shouldn’t feel bad because other people have it worse.” Like, just remember, like, so just like the one person in the Universe that’s like being actively tortured right now was at the worst. Like, they’re the only one that gets to feel bad. Everyone else should not feel bad. And I often — go ahead. 

[00:56:48] Chrissy:

I was just gonna say, that’s why I kind of put that disclaimer when I started talking about this. It’s like, everyone’s brains do work differently. So, like, you might not be in a place today where you can be like, “I’m gonna look at the sunny side,” you know, because it is different for everybody. It is, like, it’s not that cut and dry. It is really complicated. 

[00:57:09] Cheryl:

Yeah, yeah, and I — okay. Here’s a, here’s a quote. I read this in high school. But I’ve quoted this before in the podcast by Viktor Frankl from his book ‘Man’s Search for Meaning’. He was a Viennese, Jewish Viennese psychotherapist that was put through the Holocaust and survived. And he wrote, he wrote this, this is the quote I have been turning over in my head for 25 years and I’m still, I’m still trying to think what I, whether I agree with it or not, but I think it’s a helpful quote: “Everything can be taken from a man but one thing. The last of human freedoms to choose one’s attitude in any given set of circumstances, to choose one’s own way.”

And he was explicitly saying this in the context of the concentration camps when he felt that there was still some, albeit small, in that case, objectively, freedom. He had so few freedoms, right? He couldn’t choose where to go, what to eat, what’s being done to his body, but he could try in his mind, at least how I interpreted the book, I know it’s probably translated into English, is that he could still choose to, what he focused his mind on. I think the caveat that you gave, right, biochemically, like there are mental health conditions that make you not potentially capable of changing your attitude. And that’s where I think it’s, I’m not sure it’s 100% applicable to everyone, but I find it a helpful quote. Do you, is that right? 

[00:58:40] Chrissy:

Yeah. Oh, for sure. And, like, I think that’s a perfect quote to put here. It was like, that’s again, my attitude with my headspace is that, you know, there are plenty of good things, even when I’m in a bad place. And again, I just want to reiterate, like, for me, it is important to have those bad days. 

[00:59:03] Cheryl:

Yes. Yes. Yes, get it out. 

[00:59:03] Chrissy:

Like, I’m, I am so pro cry. I cry about everything. Like, happy, sad. You know, I’m just crying all the time. And so, like, that is such a, I feel like physical relief when I do that. And so, like having those bad days, it’s like a really critical component of the positivity piece for me. But those bad days are like once a quarter, maybe. Like, that will vary for everybody, but yeah, like I really, and it did take some work. It’s like that — I don’t think I’m like the optimist by nature. Like, it really took a lot of explicit, like, I guess a lot of people might call this a gratitude practice. I am not, I’ve never really considered myself like a gratitude person and I don’t like journal or anything, but I think that’s maybe, in the vernacular of some people who do is like, okay, I’m going to write down three things today or whatever. Mine isn’t quite so structured. 

It’s more about like getting used to saying like, what is the choice I’m making here? What am I choosing to do? I know like to kind of, like, to take your outline a little bit here, but like one of the choices that I’ve made that came out of the Rheum to THRIVE course is like, like taking action is just, that’s who I am as a person like I need to do stuff. Like, sitting alone with my thoughts for too long. It’s just like, I can’t, I can’t do it. I need to do something. And so, like, one of the things from the Rheum to THRIVE course, was like, kind of seeing like what you were doing, what other people were doing is like taking action about this circumstance that we find ourselves in.

And that has been super helpful to me in like keeping the positive attitude to like getting involved in seeing how research is coming up with new treatments, like how the scientific landscape is changing. Like, there is hope in a lot of places, like seeing, learning about like how exercise can be so beneficial to joints, but also in dealing with fatigue. Like, getting involved has helped me manage my disease because I learned so much more, which helps me keep a hopeful outlook.

[01:01:43] Cheryl:

I love that. Yeah. How, can you tell us a little bit more about like the specifics, like which organizations have you, did you start getting involved with? And what does that look like?

[01:01:52] Chrissy:

So, I just defaulted to Arthritis Foundation. Like, that was again, right after diagnosis, I was just like, Internet, help me. And it is, yeah, exactly. And so, I will say, I think I kind of got involved with them mostly from like, like, oh, my God, I’m going to do this thing. They have this bike ride every year. There are now two bike rides. They’re starting the second one this year, called the California Coast Classic, and it is a bike ride from San Francisco to Los Angeles. And I, you know, I’ve mentioned many times that like, I’m trying to be a pretty active person. And I was like, I want to do this. Like, this sounds amazing. This sounds like, you know, life changing, once in a lifetime kind of thing. 

And I watched it for a couple of years and was very intimidated by, number one, the distance is 525 miles. And there are, some, you know, pretty like hefty fundraising minimums because this is a charity bike ride to benefit the Arthritis Foundation. I was very intimidated by both of them. Again, Instagram started, I think actually I made like a Taylor Swift arthritis meme that someone commented on. And I saw their username. And I was like, I gotta go check this person out who was doing the ride for the first time. And so, started chatting with them. And I, like, for years I’ve been following this and finally she finished the ride this year and she was like, I think you should do this. And I was like, oh, fine. So.

[01:03:22] Cheryl:

Wait, hold on really quick. Can we just give ourselves credit for our restraint and going on an entire hour without talking about Taylor Swift? 

[01:03:31] Chrissy:

I — listen, there’ve been so many, do you know how many times I wanted to say delulu?Like, it’s, it’s always here. 

[01:03:38] Cheryl:

Delulu is the solulu. Yeah.

[01:03:38] Chrissy:

Yes. I have been exercising extreme restraint. So much. 

[01:03:46] Cheryl:

But what they should have like — oh, my God, I always have these ideas like too late — like should have integrated Taylor Swift lyric quotes throughout the entire thing. Anyway, that’ll be for the next time. Okay. Sorry. So, yeah, you’re very, you’re going on a — 

[01:04:01] Chrissy:

So, yeah, I’ve been sort of like this outsider watching the bike ride forever. But that has been one of the, one of my like, first, like, wow, I really want to get involved with the foundation. But the other thing, again, like pretty early in my diagnosis was like to help me — and the Arthritis Foundation has these connect groups that are sort of like education and support groups. So, I started attending those, which are very helpful, like a wide variety of topics covered. My group that I was attending and I’m a co-facilitator is location based, but there are also like disease specific groups. There’s chronic pain. There’s all kinds of different groups out there. So, I started going to those meetings about, I think, about once a month. That was like a great entry point. Again, of like very similar structure to the Rheum to THRIVE program of like, there’s usually like a program for the first portion and then just like some open sharing for like the second half or two thirds or whatever. 

[01:05:15] Cheryl:

And it’s usually once a month, right? 

[01:05:17] Chrissy:

It really, I think it depends, like, I think chronic pain meets weekly maybe?

[01:05:21] Cheryl:

Oh, I didn’t know that. Okay. ‘Cause I know that —

[01:05:23] Chrissy:

It just depends. 

[01:05:25] Cheryl:

Yeah. The Rheum to THRIVE is typically weekly or three times a month depending on, ‘cause then as we skip for like, you know, holidays and stuff like that, but yeah, it’s amazing. I’m part of the Seattle one, you know, that’s once a month, the Seattle one. So, yeah, it’s great to get, you know, just to get, you know, get connected the, with your local community, I think it’s really nice. ‘Cause then you can, you know, meet people in person if that’s how the, even if the group is virtual, you can maybe like meet up in person at like the Run for Arthritis and stuff like that. Yeah.

[01:05:59] Chrissy:

Yeah. So, when I was a participant, it was all virtual. Now that I’m facilitating with some other people, we’re trying to kind of get a mix going this year of virtual and in person. And yeah, there’s like Jingle Bell Run, people meet up walk, what is it? Walk —? 

[01:06:18] Cheryl:

Walk to cure arthritis. 

[01:06:21] Chrissy:

Yeah. I know people show up like for California Coast Classic, like at the finish line and stuff. 

[01:06:28] Cheryl:

Maybe I’m gonna have to do that. I love going, I love going to California. 

[01:06:32] Chrissy:

Yeah. So, yeah, like I was, I was involved in this group and very sadly, the person who ran the West LA group passed away pretty suddenly and she was a very, like, a force in the Arthritis Foundation. And I think a lot of people have felt this kind of like a call to like continue the legacy. And so, it’s so hard to talk about, but yeah. You know, that was kind of like, okay, you know, and I didn’t even know this person very well. Like, I talked on email a little bit or like Instagram or whatever, but, you know, I never met her in person or anything, but like such an impact.  

And so, I was like, okay, well here’s something I can do. Like, I’ve gotten a lot of out of this organization. Here’s something I can do because again, like doing it, that action really helps me. Like, I don’t get stuck. I feel like I don’t get in the like, I’m just gonna lay in the dark and ruminate. Like, no, because I have to go do something. And that like snaps me out of it, I think. Yeah. 

[01:07:45] Cheryl:

Yeah. Oh, I was just gonna say, make sure I didn’t want to forget to say there’s the Pathways Advocacy kind of conference that’s you and I are, we’re both going to, I haven’t been to before in March in Chicago, March 2025. We’re reporting this in 2025. Maybe we’ll be going to the future ones and this will be evergreen. But there’s also like formal, just to throw in there too, if you’re really like into politics or legislative advocacy, there’s a lot of opportunities that I was always very scared of that. I wasn’t scared of needles. I wasn’t scared of anything, and I was scared to do formal advocacy in terms of it going to my state or national capital, because I am such a people pleaser. I don’t know. I felt something, it was just like scary about talking to like a real kind of like politician. They’re literally just people. 

And if you’re really frustrated by like issues with medication access or the cost of prescription drugs, if you’ve had been, you know, a victim of like fail first policies, which fail these cheaper drugs before you can go on the expensive ones, there are really great systems in place. Unfortunately, because this is an issue that comes up year after year because we haven’t fixed it yet, but through all of the major non-profits, you know, Autoimmune Association, Arthritis Foundation, Creaky Joints, Rheumatology Foundation, or American College of Rheumatology, they send patients. I have been sent to Washington, D.C. for free. They will fly me there, put me up at a hotel, teach me what the talking points are. The only thing they can’t do is they can’t be the constituent. They need you as a constituent to go there, talk to your elected officials, tell them why patient access to medications is important, or autoimmune research is important, whatever the issue is. That has been so difficult. It’s really unexpected. It’s such an unexpected empowerment thing for me. So, sorry.

[01:09:27] Chrissy:

So, I’m doing that, actually with the Arthritis Foundation, their Ambassador program. So, I’m the same way. I’m like, I am very intimidated by this, and like I’m very, I’m very new to this. And we’re in, like, a new congressional cycle. So, I’m kind of getting up to speed, but, you know, it is kind of just like sharing your story. 

[01:09:49] Cheryl:

It is so much more simple than you think. 

[01:09:51] Chrissy:

Yeah. Yeah. So, there’s a, there’s an advocate program and there’s an ambassador program. I think it’s just kind of like time commitment based. So, I’m also doing that with Arthritis Foundation. 

[01:10:02] Cheryl:

Amazing. You jumped in feet first.

[01:10:04] Chrissy:

Yeah, it kind of, it’s, it like snowballed aggressively. 

[01:10:09] Cheryl:

And if y’all have heard it from Eileen on the podcast before, Eileen Davidson, Chronic Eileen, she and I talk about this a lot. Once you get involved in one organization, and even, let’s say you start off being involved in like the fundraiser for the, you know, the Coast Classic, or you get involved in the, you know, Live Yes! Connect Groups, and then it’s like, oh, she’s somebody who’s like interested in being involved. Or also they get to know you and they’re like, oh, you should also be involved in this. It just snowballs. So, starting somewhere, just look, you know, looking up most of these major foundations have, you know, a little tab on our website. It’s like volunteer opportunities. I really highly recommend it. 

[01:10:48] Chrissy:

Yeah. And I, you know, we talked about like, one of the objectives of Rheum to THRIVE is empowerment. Yeah. And like, boy, do I feel empowered being like, I’m doing something about this. Like, I don’t know if I’m going to see results. I don’t know, you know, in my lifetime or whatever, but like, I feel — and there is, I think like a little hopeless component can creep in with things like RA and other like inflammatory arthritis of like, you can’t do anything about it. Like, yeah, I can take my medicine and I can like try and take a walk around the block or whatever. You’re like, ultimately, I cannot change it. So, this gives me a little bit of a sense of control that I can do something. And that, to me, again, is very valuable instead of just being like totally out of control and I — and this thing is just happening to me, like, I’m doing something about it is very valuable to me and that sort of like positive mindset.

[01:11:48] Cheryl:

Yeah, it’s amazing. And, you know, just time wise, I’m going to move on to the, heavily quotations, ‘rapid fire’ questions, which we could either, you know, some of these could take an entire hour. what are your best words of wisdom for people who are newly diagnosed with rheumatoid arthritis or a similar condition?

[01:12:10] Chrissy:

Yeah, I’m just gonna pair it with what I heard of like, kind of being careful of the environment that you’re in, I think. And I meant to say this earlier and I don’t — brain fog — don’t think I did. You know, I think we have some like pretty solid evidence that your outlook can also affect your physiological condition. And so, I think that’s a piece that I keep in mind too, is like, my knees might feel better if I try to stay positive in this situation. So, I think that honestly is like my biggest piece of advice is like life isn’t over. It’s different. Like, I will not pretend that things don’t look very different for me than they did five years ago, but like it is not the end of the world. It is a major shift in the world. 

[01:13:14] Cheryl:

Oh, I mean, a hundred percent. And when you talked about your outlook affecting your condition, I really recommend Dr. Afton Hassett’s psychologist book, ‘Chronic Pain Reset’. She is a chronic pain researcher on both fibromyalgia and inflammatory arthritis. And this is 30 days of activities, practices, and skills to help you thrive. So, it’s structured really beautifully. The first, in the first part, she talks about the science behind, you know, pain, chronic pain, how the biopsychosocial framework works, how your thoughts do impact your body, and your body impacts your thoughts and stuff. And then, she gives you really specific, like I’m talking two page each specific manageable doable things to improve your quality of life. And like one is like Day 11 — it’s a 30 day, it’s like 30 days — Day 11. Pleasant activity scheduling, sorry that’s Day 8. Domains, positive emotions, physical activity, meaning and purpose, social connections. And then, we have Day 10, take a nature break. Day 11, show yourself compassion. Like, it’s really, really well thought out. And I’m going to start integrating more of that into the Rheum to Thrive and the alumni program. Yeah, it’s wonderful. 

So, anyway, thank you. Thank you for recommending those. Yeah, that being careful at the social environment like that you put yourself in is really big. I honestly say often, even though I’m the biggest proponent of social media for patient connections, I’m very glad that in 2003 when I was diagnosed there wasn’t anything like a Facebook group. There was Facebook, I think, by 2004, but there was no like groups where I could have maybe been led down some really ultimately unhelpful rabbit holes. So, yeah. 

[01:14:58] Chrissy:

Curate your social media. 

[01:14:59] Cheryl:

Curate. Nitika Chopra was the first one who mentioned that. She’s a psoriatic arthritis patient advocate. And she leads Chronicon, a really awesome support program too. So, yeah, I, I love the idea of curating it. You know, some days you want to curate it so you just have pictures of cute little penguins falling down, like kittens, and then people with arthritis who are thriving. Yeah. Do you have a favorite quote or inspirational saying for tough days?

[01:15:25] Chrissy:

Yeah, it’s from Taylor Swift. 

[01:15:28] Cheryl:

I mean, it goes without saying.

[01:15:30] Chrissy:

I was thinking about this and I even asked my husband, like, do I have a phrase? And he was like, I don’t think so. And then, I was like, wait a second. I totally do. So, I have two. And one of them I’m wearing. My very good friend sent me a birthday present and it is my favorite Taylor Swift line ever. It’s actually the top of my fundraising page for the California Coast Classic, ‘To live for the hope of it all’. And I, I didn’t even think about it until right now. That’s like totally the topic of like staying positive. 

[01:16:03] Cheryl:

That’s going to be like episode title right there. Episode title contender. I love it. 

[01:16:08] Chrissy:

It just, like, my favorite line she’s ever written. It is this outlook of, like, you don’t even — I mean, in the context of the song, right? It’s like, you know, it’s about a boy, but, like, you don’t even have the boy, you have the hope of something. And, you know, I find I can apply that to everything and it just works. And like in the chronic illness world, like, it just applies to everything. So, that’s one. 

[01:16:44] Cheryl:

Yep. Yeah. Well, I, can I just say the line before it, I was just double checking and fact checking. It was, like, ‘Wanting was enough for me. It was enough to live with the hope of all’. I think this idea of enough is something that I often think about and it goes along with the song piece, which I also love. Like, it’s like, it was enough to live for the hope of it all, which I think is beautiful. 

[01:17:07] Chrissy:

I, this is, I have a second quote, but really quick, because I think it relates to positivity. I use a word very often that my husband and I used to have a little debate over, because we define it differently, but I frequently talk about being content. Content is my ultimate. Like, being content with my life and what’s around it. And we have, we have very different life philosophies. He’s kind of like. Never content. Like, what’s the next thing? Where are we going? Like, and that’s fine. That works for him. But I talk a lot about being content and I feel like that kind of goes with enough.

Like, this is, this is a good place for me. And it might not be what I ultimately dream for and, you know, like, and hope for, but content is a very nice place to sort of find that peace and that calm. So, I think it kind of relates to what we’ve been talking about. So, yeah. So, the other line is, and there’s much debate about this song and the meaning, and it’s Taylor, so we’ll never know, but ‘You’re on your own, kid’.

[01:18:18] Cheryl:

Aha! We talked about this.

[01:18:20] Chrissy:

Oh yeah. ‘Cause the Arthritis Day posts, I think, uses — yeah. 

[01:18:25] Cheryl:

No, sorry. I’m gonna let you talk. I’m gonna mute myself. It’s like really —

[01:18:28] Chrissy:

No, no, no. It’s fine. I just, I, the first time I heard that song, I was just like, oh, my gosh. And I have always interpreted that song as like, very encouraging and positive. Like, you’re on your own, you can face this, you’ve always been on your own. And I interpreted that as like, I’ve gotten through, you know, like you survived 100% of your bad days. I have done this. I have gotten through things. And then, I talked to one of my closest Swiftie friends and she’s like, that song is terrible. It’s so depressing, about like being alone. And so, it was really interesting how we interpreted it differently. But I have always thought that like, that’s so encouraging and so positive. And that, that phrase specifically, ‘You’re on your own, kid. You can face this’ is very relevant to, again, life, but specifically like chronic illness. It’s like, to go back to the infusion thing. 

[01:19:29] Cheryl:

Yeah, it circles back. No one will ever completely understand. But you can face it regardless of that. So, I love that. I love that. Do you have a favorite arthritis gadget or tool in your toolbox, physical or metaphorical? 

[01:19:42] Chrissy:

I have a couple. So, first of all, I don’t think you know this, but I bought the can opener. And then, I bought the can opener for like everybody I know. The can opener is —

[01:19:53] Cheryl:

The Kitchen Mama? 


[01:19:54] Chrissy:

I mean, yeah. Not only does it work really well, but like, it’s just so fun. 

[01:19:59] Cheryl:

It’s cute. 

[01:20:00] Chrissy:

It’s the best. It is. I was like expecting it to be good, whatever, but like, oh, my gosh, it’s the best thing. And then, the other thing is my greatest arthritis hack. I don’t have very many, but this is a good one. And it’s using reusable ice cubes, the little like plastic things that hold water I freeze. I have a compression knee sleeve thing that I respond very well to cold on my joints. And it has this like reservoir that you’re supposed to put ice in, but like it all melts into the solid block and you can’t get it out and it’s hard to dry and it’s just like kind of a nightmare other than the 20 minutes it’s on your knee. And I use these reusable ice cubes, I don’t even have to take them out, it’s just like — I know the bag of peas trick is really good too, but like sometimes the peas aren’t the right thing to freeze. So, reusable ice cubes. 

[01:20:50] Cheryl:

I love that. I love that. No, and when you posted that on your Instagram, I was like, oh, my gosh, why have I never seen those? Like, I literally think you’re the first person to show me those unless I learned about them in OT school and forgot about them, which is very possible. 

[01:21:03] Chrissy:

I never hear any, I’ve never seen that anywhere. I’m sure I didn’t come up with it. Like, these things have existed for 40 years at least. I had them when I was a kid, but yeah, I don’t see a lot of people talking about that. And it’s like, so there’s no mess. There’s no hassle. It freezes like ice. It’s, I love them. 

[01:21:19] Cheryl:

Amazing. Amazing. Do you have a favorite book, movie, or show you have watched or read recently? 

[01:21:26] Chrissy:

My favorite movie of all time is Sports Girl, period. Maybe Apollo 13 is a close second. I really like Tom Hanks. And then, there’s a theme here. I do want to talk about the best show I’ve ever seen. I would say my favorite show is 30 Rock. I’ll say it recently because I just watch it on repeat. The best show I’ve ever seen and I never hear anyone talking about it, it’s an Apple TV plus show called For All Mankind. It is like the one, I never say this about anything, but if I could go back and experience something for the first time again, it’s this show. So, that’s, like, it’s so, so, so good. 

[01:22:10] Cheryl:

Okay. Okay. I’m going to check that out immediately. I am looking forward to — this is the week that Severance Season 2 is coming. 

[01:22:18] Chrissy:

Ah, I haven’t watched it, but it’s on my list. 

[01:22:21] Cheryl:

It’s not on paper what I would love, like my favorite show of all time is like Parks and Recreation, which is kind of similar to 30 Rock. Yes, but this is very different. Okay. Anyway, it’s very —

[01:22:32] Chrissy:

I can’t watch anything right now because it’s like where you’ve got basketball and football. All we do 24/7 in this house is there’s like 12-hours basketball a day. So, I need basketball season to be over and then I can go back to my show. 

[01:22:43] Cheryl:

Okay. Yeah. No, you have, you have a plan. You have a strategy. Okay. Last one, which we’ve kind of circled around the whole time, but what does it mean to you to live a good life and thrive with rheumatic disease? 

[01:22:57] Chrissy:

I mean, I think it’s just like, live your life is really the basis of it. Like, I thought it was over. It’s super not. And, you know, if I didn’t have arthritis, like, I would never dream of riding a bicycle from San Francisco to LA. Like, all these things that I thought were gone and over. Like, the community, like, I’ve met so many people that are just so wonderful. Like, getting involved in the, like, you know, I haven’t done too much yet, but this advocacy stuff with my local lawmakers is just like something I would not have done. It is not in my comfort zone. 

So, it has opened so many doors to so many things that I wouldn’t have ever thought of or pursued without a diagnosis. And it’s really interesting how like I’ve said this over and over, like things are going to change. Like, my life is so different. And I think, again, I don’t want to speak for anybody else, but I feel like I’ve heard that a lot. Like, things are different post-diagnosis. But, like, trying to see the opportunities has just really, like, I feel like, I don’t want to say the toxic positivity thing and, like, get two silver linings here, but there have been good things that have come out of a really crappy diagnosis. 

[01:24:40] Cheryl:

Yeah, that’s not toxic positivity to recognize, you’re choosing to turn towards and to see the opportunities that it has led you to that you wouldn’t have had else, you know, otherwise. 

[01:24:51] Chrissy:

So, I think just not letting it take over, you know, it may have taken over my life in, you know, being involved in all these things but not the disease. And I think that’s my biggest sort of like takeaway of living a good life with this is like, just live. Just live your life. And this thing will always be under the surface, but it doesn’t mean you can’t get on with it. 

[01:25:19] Cheryl:

Well, it’s living — it’s, this is me being like a linguistics nerd, but like living your life with arthritis, which is making your whole life about battling it and controlling it and doing the perfect diet or doing the perfect whatever that’s going to eliminate it, that’s a definitely a different perspective. You’re saying living with it. And to which I say mic drop! [Laughs] I brought up the Taylor Swift — I just like walk around the house with this. 

[01:25:50] Chrissy:

I love it.

[01:25:51] Cheryl:

Because you have to watch the video, watch the video on YouTube to see what just happened. That’s your little teaser. Well, where can — thank you so much. This has been amazing I mean, we always have a little outline and we try to talk about the things that you’re most passionate about sharing. And this was just really wove together so beautifully. So, thank you for taking the time. We also talked for 45 minutes before we started recording. Thank you for taking a lot of time. 

[01:26:16] Chrissy:

We could probably talk for hours, but.

[01:26:17] Cheryl:

No, we’re talkers. We’re talkers. Where can people follow you online or find you online?

[01:26:25] Chrissy:

So, I guess I’m most active on Instagram with @Arthritichrissy, sharing the C in the middle. I mostly am active there and can find me, other places online. I do have, if it’s okay to plug my ride. 

[01:26:44] Cheryl:

Oh, I’m putting all of, I’m putting a link in the show notes to not only your social medias, but also that your fundraising page.

[01:26:51] Chrissy:

Yeah. So, this California Coast Classic, I am attempting to be, I’m giving myself a stretch goal of raising $7,500, and I’m collecting donations and those go to the Arthritis Foundation to help fund research to, you know, like facilitate these support groups, et cetera. So, I have a little like page and it has more details about my story with rheumatoid arthritis and finding a diagnosis. And if you’d like to ride from San Francisco to LA, I think there are still some slots open. It’s the 25th anniversary of the ride and they cap it, I believe, at 250 riders. So, if you’re interested in something like this, I think there are still spots left, but I don’t think there’s very many, so. Or you can, like, reach out to me with questions about the ride. I’m happy to share my experience volunteering with the Arthritis Foundation, if people are interested in getting involved there. I have, you know, nothing but good things to say about Rheum to THRIVE also, so if you have any questions about Cheryl’s program and want to ask somebody who’s been through it, I’d be happy to field those questions too.

[01:28:10] Cheryl:

Oh, amazing. Thank you. Oh, Teddy wants to join. 

[01:28:12] Chrissy:

Yeah, we didn’t really talk about that, but yeah. Aw, Teddy. 

[01:28:15] Cheryl:

And then, my little puppy, again, watch the video to see Teddy wants to join. He can tell when I’m like wrapping up. So, he’s like, it’s time for me to come in your lap. 

[01:28:23] Chrissy:

That’s funny. 

[01:28:24] Cheryl:

Well, yeah. Thank you so much, seriously. I’m so glad that our paths have crossed and, I will be supporting your bike ride for the Arthritis Foundation and hopefully everyone will follow up with you online, but thank you again for taking the time. 

[01:28:41] Chrissy:

Thanks for having me. 

[01:28:42] Cheryl:

Thanks. Bye!

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