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Riding the Chronic Illness Roller Coaster with Rheumatoid Arthritis, Endometriosis and Cancer: Stephanie’s Story

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Summary:

In episode 152 of The Arthritis Life Podcast, Cheryl and Stephanie discuss Stephanie’s journey learning to live with endometriosis, cancer and rheumatoid arthritis diagnosis. She explores the social impact of living with invisible conditions and highlights the importance of social support from others who “get it,” found through Cheryl’s Rheum to THRIVE support group.

Stephanie and Cheryl also reflect on the “roller coaster of acceptance,” or their journeys towards self compassion and acceptance in the face of fluctuating, unpredictable conditions.  They also delve into the challenges of living with cognitive dysfunction or “brain fog” and Stephanie shares how she copes with this while serving as an adjunct professor.

Stephanie also shares resources that have helped her in her chronic illness journey, including her work with Atlas Assistance Dogs and her impactful writing on disability identity.  Together, Cheryl and Stephanie show how living with chronic conditions can foster resilience, deepen self-awareness, and lead to a fulfilling life despite challenges.

Trigger warning: miscarriage

Episode at a glance:

  • Personal chronic illness Journeys: Stephanie shares her experiences of living with rheumatoid arthritis and the emotional challenges of a new diagnosis after surviving cancer and endometeriosis.
  • Developing resilience and adapting to the ebb and flow of symptoms.
  • Building Community: The value of connecting with others who understand and the role of a support system in managing arthritis.
  • Practical Advice: Learn how adapting and being less rigid can improve quality of life despite chronic illness.
  • Coping with difficult symptoms like brain fog
  • Service animals: Stephanie shares the impact of animal assisted therapy and tips for caring for a dog when you have rheumatoid arthritis.

Medical disclaimer: 

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

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:

Stephanie Keesey-Phelan:  I am a dog behaviorist and adjunct professor in behavior analysis. Though I’ve struggled with other health problems over the last five years (endometriosis and cancer), I was diagnosed with seronegative Rheumatoid Arthritis in the last year. I have found RA to be one of the most encompassing and challenging of the medical conditions I’ve had and am learning how to live life as someone with chronic illness and disability.

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:

All right. I’m so excited today to have Stephanie on The Arthritis Life podcast. Welcome! 

[00:00:06] Stephanie:

Thank you. I’m excited to be here. 

[00:00:09] Cheryl:

Yay. Can you just get us started by sharing where do you live and what is your relationship to arthritis? 

[00:00:15] Stephanie:

I live in central Massachusetts and my relationship to arthritis is relatively new. I was just diagnosed in January of this year, so 2024. And so, I feel like I’ve learned a lot and I also, I’m consistently still very surprised by what I don’t know or how this disease is showing up for me. So, that’s kind of where I am right now. 

[00:00:45] Cheryl:

Yeah. Understandable. Well, and this is not your first rodeo, as they say, with chronic or acute illness. I know that you’ve also been living with endometriosis and then cancer. Can you share a little bit about, you know, your diagnoses for all of your conditions? You know, did you have an easy experience, hard experience? All of that. The saga, as we often say. 

[00:01:15] Stephanie:

I would say as far as I’ve been very privileged and fortunate to have access to good medical care. So, getting to see doctors hasn’t been a huge challenge for me. The diagnoses have been the more kind of tricky spot. So, it started off with cancer. Actually, I had a miscarriage that had a complication. And so, already that was kind of pushing me to see specialists when I got pregnant again. And I had a second miscarriage in the fall of 2020, and found out on some kind of follow-up routine labs that it had been a really rare type of pregnancy. It was a genetic abnormality that was just kind of a fluke. And in a very small percentage of cases, those types of pregnancies form a malignant tumor. 

And so, my doctors were like, well, that’s very unlikely, but let’s just do another, you know, ultrasound. We’ll do a little bit more lab work. And lo and behold, there was the tumor on the lab work. So, the tricky thing about that is, that particular type of tumor isn’t exactly cancer, but it has a lot of the same features. And the treatment is a type of chemotherapy. And so, I had that in the winter of 2020. And it was really hard. It was, I mean, it was hard for a number of reasons, but it was a really rare type of tumor. So, there really wasn’t much community to be found like online or, you know, I didn’t know anybody who had gone through anything like this. And of course, it was also COVID, so it was just a very, kind of isolating experience to have gone through that. 

[00:03:13] Cheryl:

I can only imagine. I’m so sorry, especially with getting pregnant and probably the happiness and excitement about, you know, having a pregnancy and then having it turn into this really difficult situation. I’m just, I’m so sorry I had to go through that during COVID especially. 

[00:03:29] Stephanie:

Oh, thank you. Yeah. It was a lot. you know, I had, good some support, but nobody really kind of, it’s a mashup of all of these really hard things. And I think it’s just hard for folks to kind of relate. So, I went through chemotherapy, which was very successful. All my tumor markers went down. But about partway through, I had chemotherapy for about three or four months, and about halfway through that, I started to have a lot of pelvic pain. And, there was no medical reason as far as the tumor was concerned that I should be having pain. It was, and my blood pressure was decreasing. Everything was like getting lower. So, I got bounced back to my gynecologist who really didn’t think — my oncologist thought maybe endometriosis. My gynecologist thought, hmm, not so sure. But, none of the sort of treatments that I had for the pelvic pain were all that successful or successful consistently.

And so, about a year later, my husband and I had decided that we weren’t going to continue to pursue parenthood and my doctor offered me to have a laparoscopy to look around and see if endometriosis was there and also to tie my tubes. And at the same time, this sort of this kismet, the gynecologist that I had originally been hoping to see who had been out on maternity leave came back. And she said, your uterus has been through a lot. It’s had a lot of trauma. It’s probably related to the pelvic pain. If you’re not going to be pursuing pregnancy, it might be better just to do a full hysterectomy. So, in the winter of the following year, I had that done. And there was a lot of endometriosis, quite a bit. And looking back now, I think I did have earlier symptoms that always was just, you know, I didn’t really complain about them that much.

It was sort of an impression that like, this is just a normal variation of, you know, having a uterus and a body, but there was a lot of endometriosis. The other thing was that there was still cancer in my uterus. So, it was actually really, really important that I had that hysterectomy. They sent that tissue out for additional testing and that came back as the rarest rare type of gestational tumor. And there’s really — so, definitely cancer. And it’s resistant to chemotherapy. So, it makes sense that it’s, you know, it hadn’t fully been gone as a result of the medication that I had. 

And so, now, for that, I just have, follow ups, you know, I have regular PET scans and lab work that I do, and that will be watched for a while, but it’s such a rare condition that there aren’t any guidelines for follow up. So, my doctors are kind of winging it and erring on the side of being conservative and careful, which I appreciate, you know. When I had the hysterectomy, they did take out the endometriosis that they could. And since then, I’ve continued to have kind of on and off pelvic pain. You know, I do think it had a beneficial impact on my symptoms, but not — it hasn’t fully resolved them. 

[00:07:01] Cheryl:

Yeah, I’m so sorry. That sounds awful. And just quick definition moment. Do you mind telling the audience, for people who might not know, what is endometriosis?

[00:07:14] Stephanie:

I will do my best. I have to tell you that RA has sort of taken over my medical lexicon, but endometriosis is when tissue that is similar, but not the same as the tissue of the uterine lining, grows in other places. And it can happen anywhere in the body. It’s not, it’s often you might find it in the bowels, but it can be all the way up in the chest cavity, kind of all over. And it just wreaks havoc. This tissue cycles similarly to endometrial tissue. So, it can fluctuate, with your cycle. And, the way, I don’t know if this is like medically accurate or not, but the way that I think of it is it just, like, it just kind of makes a mess and sticks things together. You know, it starts to attach to all kinds of different organs and parts of your body. And so, it can really cause, quite a lot of problems and be really, really serious for people for people who have been diagnosed with it. 

[00:08:16] Cheryl:

Thank you. No, that was what I was going to say, too. I pulled up the WHO definition just because it’s something I kept hearing about over time. And I was like, I know it has something to do with the uterus and something to do with, you know, stuff growing where it’s not supposed to. But I was like, for a long time, I didn’t know it was so common until I started being more active in the chronic illness community.

So, you know, I think, I know this main, the main point for today is sharing your rheumatoid arthritis story, but also it’s important, you know, I think it’s good to share the rest of your health journey because these conditions aren’t always your first experience with rheumatoid arthritis by navigating the healthcare system and, you know, everything exists, I think of that Kamala Harris comment, “You exist in the context in that, of that which you live and all that came before you.” It’s like, everything’s in the context. So, you know, and I’m, you know, to anyone listening who’s had to make such difficult decisions about, you know, whether or not to try to pursue pregnancy or have a hysterectomy or all that.

I’m just, I’m really sending my love out to anyone who’s been through anything similar and to you, obviously, to you as well. ‘Cause that sounds, all sounds just hard. It’s just hard. Yeah. And then, how did, you know, what did you start feeling in terms of the rheumatoid arthritis symptoms? 

[00:09:37] Stephanie:

Yeah, well, that, that was kind of a slow burn. So, I got this nodule on one of my fingers and I had broken that finger a little further down on my hand the year before. So, I just sort of thought like, well that’s kind of weird this bump showed up but maybe it has something to do with that I broke part of my hand previously. And so, I didn’t really think much of that. And then, maybe a few months later, I noticed that my ring finger was swelling a lot and I couldn’t get my ring over it consistently. And I honestly, I was like, maybe I’ve just gained some weight but like, in your knuckle? You know, like, yeah, it’s infuriating that is where the brain goes, but anyway. 

[00:10:27] Cheryl: 

We try to make sense of it. We all try. I thought I had sprained my finger and just not remembered how I did it. 

[00:10:34] Stephanie:

Yeah, I mean, yeah, you’re like, this is strange, but maybe this. 

[00:10:37] Cheryl:

Yeah, your mind jumps to the most simple explanation. 

[00:10:41] Stephanie:

And I probably wouldn’t have done anything about it at all. ‘Cause I wasn’t having any other symptoms at that time, but I happened to go in and see my gynecologist for a follow up for my endo. And she asked, do you have any new symptoms? And I was like, well, actually this isn’t your area, but I’m having a swelling in my hands and her face just dropped. And she like, she held my hands and looked at them and she was like, “Does anyone in your family have rheumatoid arthritis?” And I like broke out into a sweat. I was like, no, no, one in my family has RA. And that was her concern. 

So, she referred me to rheumatology in the hospital system that I was being seen, but they didn’t have any appointments. This was early December of 2023. And they didn’t have appointments till April of 2024. And I was like, I can’t just sit on this. Like, I’m going to lose my mind Googling everything about it. So, I was able to see a rheumatologist in a different hospital system in January. And he diagnosed me with CR negative RA, and put me on Plaquenil to start. And his sort of, you know, my labs did not show anything really out of the ordinary. Some of the inflammatory markers were a little high, but that was pretty much it. And so, he was sort of thinking like, this might just be an episodic thing that’s going to come and go. And, maybe this is not the actual thing, but we’ll start there. I had some concerns about his ability to integrate my care with my other conditions.

And so, you know, also, I like to know things. It helps me to have as much knowledge as possible. And so, I decided to get a second opinion. I kept the appointment that I had in April with the original rheumatologist. And I went and saw, another doctor and, she agreed with the diagnosis. I felt more confident that she could integrate my care, but she was really dismissive of my symptoms. And at that point, my symptoms, like I had joint pain in my knees, my elbows, my feet, like it all just came along pretty quickly after in the winter of that year. So, I really was struggling. I felt like I was struggling and, she was saying, you know, like, “Well, your symptoms aren’t that bad. So, we’ll just keep you on the Plaquenil.” And I was like, not that bad for who? Like, this is bad for me. I’m not functioning very well. 

[00:13:28] Cheryl:

So, sorry. Oh, and why don’t we just very quickly deviate to say, tell the audience, what is it that you do for a living? 

[00:13:36] Stephanie:

Oh, yeah. I work with dogs. I’m a dog behaviorist and I work with dogs that tend to have challenges. So, dogs that might have separation anxiety or aggression or react to, you know, I work with, I can do a lot remotely, yay technology. I do go out and see clients in person and see dogs and that I also work as an adjunct faculty at a university here, but that part of my work is pretty physical and demanding, especially in cold times of the year. 

[00:14:12] Cheryl:

Yeah, that was my thought too. It’s like, it’s, you know, the determination of how serious the arthritis is it’s dependent on the person’s demands of their daily life, you know, like, and whether or not maybe she’s feeling these ‘objective’, quote unquote, you know, measures like the degree of swelling and stuff like that doesn’t, you know, even if that’s not as high, if it’s affecting your life, that’s still a huge concern, you know. So, anyway, that’s one of my little soap boxes. So, but that’s, I think it’s important for people to understand. That’s why it’s a horrible feeling to feel dismissed by a health professional. So, I’m sorry I went through that. Okay. Continue. Thank you. 

[00:14:53] Stephanie:

Well, I was just going to say, I had sought second opinions for other, some of my other issues and had equally upsetting doctors. So, this wasn’t the first, go around with this, but I was pretty upset. I felt like my experiences were being diminished or maybe compared to people who did have, you know, a pretty severe impact of their condition. So, I sort of took from that, okay, well, at least now two rheumatologist have agreed on this diagnosis. So, I’m feeling pretty confident that RA is what I’m dealing with. But I just now need to find the right provider.

And in the Boston area, we have a lot of providers. So, yeah. Yeah. I asked around. I had a few people I knew who had rheumatic diseases and one good friend referred me to her rheumatologist. So, I went and got a third opinion. And this doctor was fantastic. She really took her time with me. She, looked at all of my joints, which the other doctors had not. She had me demonstrate the type of movements I do in my work. So, how I would sit on the ground with the dog and can I get up without using my hands and all kinds of things like that was just, I was really blown away by how much more thorough it was and how much she listened.

And it is, makes me both really grateful and also really sad that stood out, that was sort of such an impactful thing. So, I was like, okay, I’ve got my provider. This is great. What I was not prepared for was sort of a collaborative approach to treatment options because everything that I had up to this point, there were either limited options or it was like a rare thing and nobody knew what to do. So, they’re like, this is the thing you do. And so, I was not prepared to be asked, you know, like, “What do you think, you know, here’s some options. What do you want to start with?” I was like, I don’t know. You pick. It doesn’t matter to be. So, that was a little bit different. But also, around that, kind of as all this was happening and I was having all these appointments, I found the Rheum to THRIVE group.

Oh, yes. And I was, you know, with endometriosis, is pretty common, but not a lot in the grand scheme of things is known about it, kind of how it happens and what causes it. And, my other, you know, the cancer was, there’s like three papers on it and that’s it. So, I spent a lot of time for those conditions like that, you know, I’m, a nerd, so I found the research and read what I could and tried to understand.

And by the time that I got to RA, I was just like, I cannot. Like, and also, there’s a lot more about RA out there than those other conditions, so I felt really overwhelmed with wanting to make sure I was getting the best care that I could, and knowing what that should be, and also just how to live, because all, most of my doctors were like, “Here are the meds,” but didn’t have a lot to say about, like, well, what do I do when my hands are, you know, stiff and cold and I’ve got to be out there walking dogs, or, you know, what do I do for my knees?

And, what do I do for brain fog? I could talk all day about that. ‘Cause that’s my most current annoying symptom. But I just was, I felt paralyzed. Like, I, you know, this was all just too much in a, you know, three-to-four-year span. And, what a relief it was to find the support group and all of the information you provide, because I really feel like it was made for me, honestly. I, was just like, it’s evidence-based and it’s, you know, and it’s addressing all of these areas of my life. And I just, you know, and other people kind of going through it. So, that was really a godsend, I think, as I was going through this process, and I felt really lucky that I had access to all of this support when I really needed it.

[00:18:58] Cheryl:

Yeah. Well, and yeah, you’re clearly a very thorough person, you know. I really, I think that’s a testament to, you know, the fact that you got it, have a good team around you now is testament to all your work to getting those second opinions and such. And yeah, I mean. I’m really happy to hear your experience with the Rheumatoid Arthritis Program because that’s exactly why I developed it.


It’s, you know, your doctors are extremely helpful for helping you get the foundation of the treatment for most people with rheumatoid arthritis. The base layer of like your pyramid of treatment is the medications because they’re so effective, but there are many of them. Every year there’s more to choose from.

So, even that conversation is big, you know, in terms of which ones to start with, should we add two or should we add three, or should we add or stay on two, but change number one to a different —? You know, that’s the whole thing. And then, but you’re right that, you know, they, not only do they not have time in their 15-minute appointment to help you navigate regular life with RA, they actually aren’t necessarily trained in that to the same degree as like an occupational therapist.

They’re just kind of apples and oranges skill sets, you know, like we are trained to be able to help people understand how to protect your joints during daily activities like caring for pets. That’s a huge one. It’s also a big tripping hazard depending on how tall your dogs are. And you know, how to understand what are the tools at your disposal if you’re experiencing symptoms the medications, as medications typically aren’t fast acting. So, yeah, what can you do if your hands are stiff? 

So, anyway, you know, that’s why I was blown away when I was first kind of developing my own program. I was like, well, let me look at other similar programs and see like, where can I improve upon, you know, don’t recreate the wheel, improve upon what’s already done. And I’m like, wait, no, one’s doing this. Like, find a single program that was specific to, it’s called self-management in the OT world or in the healthcare world, public health, you know, they’re doing it for like generic chronic illness self-management programs. There are, and I don’t say generic like a pejorative, like, they are for, there are things that are the same, whether you’re coping with diabetes, rheumatoid arthritis, you know, other chronic heart disease, chronic conditions, there are evidence-based programs out there for that general, but they’re not as in-depth, like they’re meant to be at like a sixth or seventh grade level, whereas mine, I mean, for better or for worse, this is not best practice, but it’s at more like a college level of scientific research basis. 

So, anyway, yeah, I’m glad you found it because that’s one thing I’m still learning about like search engine optimization. Like, how people can find it. But, you know, it sounded like the two things that you kind of needed were like just this like logic part of your brain. Like, how do I cope with this? And then, like the emotional part with the support group. Is there anything else you want to share about the group? Sorry, I’m feeling brain foggy right now as well. 

[00:22:02] Stephanie:

That’s okay. Yeah. no, the group has been wonderful. I will say that, my husband has ulcerative colitis and has for a few decades now and he has been fantastic. And honestly, I have felt like, oh, I get it now. You know, like all the things that he’s sort of been through. So, he was a really fantastic support. But some things are different, like you said. And so, in terms of the support group, I think I encountered it when I was still going through diagnosis and figuring out treatment options. And so, it was really helpful to get a sense of like what medications other people had tried. Like, what kind of came up first. And what kind of process it was for them in terms of waiting for things to work. And I think that everything, you know, I feel like even if it’s not relevant right now, it still gets in there.

So, like this fall, I started, or the late summer, I started Remicade and I like knew from hearing from people in the group that this was not going to like instantly work. And yet the process of it not instantly working sucked. It was so awful. But it was nice, at least to remember, like, this is not forever. This, you know, there will come a time when we know if it’s working or not, and can make a change or keep going. And a lot of that I think was from the group kind of getting through some of those really tough times in terms of like the medication transitions. And also just, you know, I have wonderful, wonderful supportive friends. And I have been through a lot of medical stuff. So, I felt like, okay, everybody’s like gone through this with me before. So, like, and I was like, surely nobody’s going to say the wrong thing or not really support me in the way that I need right now. And for the most part, with my close friends, that didn’t happen.

But, you know, “You don’t look sick.” And, and all the other things came up for me one by one. And so, it was really nice to hear from the group about how they managed that. Kind of how they got through it when they said something, when they didn’t say something. And, you know, just, I think there’s something really heartening or supportive, I guess, of being around a group of people who, like, get it and they’ve been there.

[00:24:36] Cheryl: 

That makes a lot of sense. And yeah, I mean, I think a lot of us, people who have these chronic conditions, will even say things like, you know, “Oh, well, everyone like knows what to do if someone has cancer or there’s like a social script for that.” I know it’s not that, and then they’ll say, “Well, it’s not the same for invisible illness or chronic illness.” I know it’s not that simple because people still don’t know what to say to someone with, you know, but, but I remember, I think, now you tell me if I’m wrong, that you’re saying something, you’re saying something about, like, that it, was surprisingly difficult to cope with rheumatoid arthritis versus cancer, right?

[00:25:14] Stephanie:

It, for me, it definitely was. I think mostly because, my cancer treatment was relatively non-invasive. I had to go to the hospital often, but I was an outpatient. So, I was in and out, and it was COVID. So, I wasn’t really missing anything. Nobody was doing anything at that time. You know, nothing was happening. So, it was mostly just kind of me and my thoughts that are working from home. I was, employed full-time at a university then and that had some nice benefits. So, I didn’t have to work, through all of my treatment, but, you know, that, that felt like a very acute thing. And I think because endometriosis was sort of shoved in and around the same time, like, I sort of figured out what, at least right now, and it has been fairly consistent, what endo was going to be like for me and how I was going to manage it.

I was like, okay, like I’m going to have pelvic pain sometimes. And that will be that, and I can do X, Y, or Z things. And if I need more help, this is what I do. But RA, and also, I guess maybe my endometriosis just got to a, like, we’re at the end of cancer stuff. I’m just being monitored. There’s nothing to do for that. Endometriosis, I’ve got it under control. You can control. It’s a theme for me, I think. Yeah. I’ve got it under control. I know what to expect with it at this stage. But for me, RA was like, I felt like I was waking up in a new body every day. You know, the inconsistency I think was, and has been, it like continues to be really challenging for me because I, you know, can do the same thing on two different days and on one day it’s fine. And on the other day it’s not.

I feel like. I only exist well in a very small range of temperatures. Now that I’ve gone a full calendar year with RA, like, too hot is too hot. And now it’s cold again, and it’s way too cold. But there’s like a very small 10-degree window in there where everything is fine. So, it just, it feels like a moving target. And, you know, like, just in the end of the summer when I felt like, okay, I know what my joint pain feels like. I know what my fatigue is, has been at its worst. Like, I think I’m getting a handle on this. Brain fog. Like, I’ve never experienced before. Like, really threw me for a loop this fall. I just, I felt like I was not functioning well. I wasn’t like keeping up with, you know, the things that I usually do. And you know, like I was losing my car in the parking lot at the hospital all the time. And, you know, I think I had this idea, I didn’t really realize that was going to be such a significant symptom. And so, I was okay, this is another physical illness. Not that brain fog isn’t physical, but to me, I had sort of separated them. 

And so, I was like, I am understanding what RA is in my body now. I’m not doing that great at accepting it, but I’m working on it. And then, to have this, you know, I sort of thought like, okay, well, my body’s going to be a mess, but my mind will work. And then, when that stopped happening in the way that I was used to it happening, I just, I feel like I just fell apart. I like canceled everything that happened after 7 p.m. in the evening, which is a lot for me. I usually do schedule my evenings pretty intensely. And I canceled a lot of, you know, I, I just can’t keep up at the pace of that I used to do things. And, I think to that, you know, all of that being said, I just feel like my life has been impacted in a much, much bigger way. In a way that is not going to stop and is just going to keep going, in a way that’s hard for me, you know. 

Endometriosis, like it’s not fun and for me, but it’s manageable. I can still mostly do all the things that I want to do and it hasn’t impacted my life in a huge way. And cancer, like I said, is, kind of on the back burner right now. So, I think that’s why it’s been, it has felt like a much bigger deal to me than the things that I’ve been through already, because it has just touched every part of my life and in very significant ways.

[00:29:48] Cheryl: 

Yeah, and I know, you know, you were being careful to say, in your experience, right? Like, this is your story, your experience. We’re not saying that cancer is a cakewalk and endometriosis is a cakewalk and rheumatoid arthritis is a cakewalk. There are, there is vice versa examples all over the place. There’s people who start one medication for RA. It does work. Puts the disease swiftly into remission and they have no impacts for 10 years, you know, and that’s totally that’s their story. So, we’re definitely not saying — I think maybe I worded that question problematically, but I was just trying to share that it’s something that most people at face value would just assume.

Cancer is always like the worst possible thing you could ever have. And rheumatoid arthritis sounds like this kind of mild inconvenience because it has the word ‘arthritis’ in it, no one knows what rheumatoid means, so part of the goal of this podcast is breaking down those kind of stigma — not stigmas, but those, incorrect assumptions people would have. So, I think your story is illustrative of that. 

And I’m, you know, to follow up on brain fog, I’m, you know, which is also sometimes called, you know, dysexecutive functioning or cognitive dysfunction or neuroinflammation. You know, it is something that I’m actually — the last time I updated the Rheum to THRIVE self-paced course, which is like the core curriculum for the program, which you can always do by itself, or you can do it in conjunction with the support group. I updated it in early 2023 and I’m going to update it already again in 2025 because I really want, well, there’s first a couple of things, like, amazingly certain links are already out of date, but also I want to be — yeah, I know. Isn’t that — but just links, like, the information is not necessarily just the links. There’s also been some more really great resources that have come out, like the 2024 or 2023 guidelines for fatigue from the European league against rheumatism. Those weren’t out when I made the course yet. They were, they came out later that year. So, things like that. And I kind of, I’m keeping a running tally of what I want to add.

And I really, I need to, I want to add a bigger focus on brain fog in the tools for pain and fatigue section. I’m going to be like tools for pain and fatigue, etc. Like, and then I mean, for better or for worse, it’s a lot of the tools for fatigue are the same as the tools for brain fog in terms of the remedial strategies, things like improving your sleep, exercising, you know, lifestyle variables that can help improve your fatigue and brain fog levels. But fatigue is, I mean, brain fog is the least understood aspect of these conditions. It’s unclear why sometimes the medications work so well on all of your symptoms and other times they work really well for the joint pain, but not the brain fog and fatigue. What does brain fog, we can keep calling it that, what does it feel like to you? How does it show up? You mentioned like losing your car in the parking lot. What are some other examples, if you don’t mind? 

[00:32:53] Stephanie:

Yeah, no, I’m happy to. I will say that I started calling it cognitive dysfunction because I was getting a lot of like, “Oh yes, I also have brain fog because I stayed up too late.” And I was like, no, like, I get it. But that’s, I’m talking about something that’s been a lot more pervasive. I think ways it has come up, what most scared me when it first started happening was I was forgetting conversations that I had. So, someone would say to me like, “We talked about that like a half hour ago. Or, you know, we definitely, like, I asked you that already,” or, you know, those sorts of things that, that was, that was alarming to me because I, you know, like I don’t claim to remember things very well. But, you know, something that had just happened, seems a little unusual. 

You know, I’d walk into a room and forget what I was there for, but like, much more frequently than would, had ever happened to me before. I would get confused when I was asked questions and like, be a lot more rambly in my discussions of things. I just, I felt like I wasn’t maintaining the thread. And actually, I noticed this recently. So, I’m in this lovely, a group of dog trainers and we give each other feedback sometimes on our coaching skills.

And so, we have to submit little videos of ourselves coaching a client and then everybody gives feedback and it’s very lovely and helpful. And I’ve been doing this for a little while now. And so, it was my turn to submit my video again, and I was looking through client videos to see what I wanted to submit. And I was really struck by how many more ‘ums’ and ‘ands’ and pauses and like thinking through things as I was saying them but then going back. Like, it just, it was not sort of the fluency of coaching that I considered that I do, and that I have seen myself do from these other video samples. So, that was sort of jarring. 

And, you know, I appreciated that you said, I think, in the last support group meeting when I was being upset about this. Like, my 75 percent or 80 percent is still probably quite good. Like, I don’t think I was doing a poor job, but this is just not the way I’m used to functioning. And I haven’t lost any clients from this, you know, it’s probably not as big a deal as it feels like to me. But those are the sorts of things that have come up. And, for me, because I love data and I love keeping track of things, I kept a really thorough symptom log that I brought to my rheumatologist maybe a month ago now to talk about brain fog. And she had said what you just said, which was fatigue is often related, and how well am I sleeping? 

And, you know, so we’re now exploring sleep. Unfortunately, I’m not sleeping that well. I used to sleep very well. And she said, well, how much caffeine are you taking in? And I was like, I’m fine. I have no problems. Nope. I’m good. We don’t need to alter my caffeine intake. But of course, we have. I don’t think its, I don’t think it’s making an appreciable difference, but, you know.

[00:36:25] Cheryl: 

Yeah, it helps to have, yeah, it helps. I think if you’re a very analytical person, which you are, and one of the worst feelings is feeling like there’s nothing to be done. So, at least knowing that there are some little levers that you can pull on. Okay, can we improve sleep by decreasing caffeine or adding something like, you know, this is not endorsing anything, but I know a lot of people in the groups have brought up, you know, CBN, not CBD, but you know, CBN gummies, like there’s certain kind of cannabinoids that can help people fall asleep or melatonin.

You know, there’s so many little things that can be done. And I’m going to put in the show notes, which are always on the Arthritis Life website. I’m going to put a link to a resource document that Eileen Davidson made and I contributed to that was in, that was made for our ‘It’s Not Just Joint Pain’ presentation at the Rheumatology Conference in 2024, because we put together like a lot of citations for different peer reviewed, randomized controlled trials, you know, journal articles on each of these non-joint or extra-articular symptoms; fatigue, brain fog, slash cognitive dysfunction.

And so, it’s for anyone who’s skeptical because a lot of doctors, and I’ve heard rheumatologists say this, “Oh, well, if it’s really that severe, it’s probably not just from the RA. It’s probably from something else,” which that’s always a possibility that there’s something else going on, right? There could be, yeah, to a hammer, everything’s a nail. Not everything that you’re experiencing is potentially just rheumatoid arthritis. But there are many randomized controlled trials where they’ll show that the people with — well, you can’t randomize people to have rheumatoid arthritis — but they’ll show that people, that people with rheumatoid arthritis do experience cognitive dysfunction at a higher rate than the general population. And then, they’ll put them, they had subjected people in a couple of these studies to like, different conditions. So, the randomized controlled trials would be for like exercise one, how to exercise intervention. Other group didn’t. The people who did the exercise intervention showed a better sleep quality and better cognitive performance. So, that’s kind of like doing these kinds of studies shows that there is some relationship between all these. It’s just, yeah, knowing for your body what’s going to move the lever, you know. 

And for me it’s also, it can get even more complicated. Again, this is, you and I are both analytical, right? So, I’m also thinking like my word finding goes really fast and my short term memory deteriorates very rapidly with sleep deprivation, like I will forget what I was going to say and stuff. But there’s also like when I’m stressed, I also know stress affects my cognitive function. And it doesn’t show up in terms of working memory and brain fog, but it comes up more for like sustained attention. Like, if I’m stressed, I have a hard time focusing on something. So, it’s also like there’s even all these different components, right? 

And there’s like generative stuff like writing and creating things versus like taking in information and making sense of it. These are all different cognitive functions. So, it’s just very, no wonder we’re overwhelmed sometimes. There’s so many different components to it. But I hope anyone listening who has, you know, I always try to remember that some people listening might just have just gotten diagnosed or don’t even know if they have it yet, but it’s helpful knowing from the beginning that this could be, I mean, it’s scary but helpful, I think, that this might be related to your RA because I did not know for many years that cognitive symptoms could be related to RA. I thought they were just totally different. 

[00:40:07] Stephanie:

Well, and it, was great that week that we talked about it in the group because everybody had something to say about it. You know, it was very clear to me, like, okay, this is a thing. And, that, you know, I don’t wish that for all of us, but, you know, it feels better to know, like, okay, this is a thing I can expect to happen. And here are the things that I can do, because control. 

[00:40:31] Cheryl:

Yeah, just to add to that, like, we had the initial Rheum to THRIVE cohort-based program that you took. And then, there’s also an additional alumni group, or we call it the Thrive Graduates, and that’s a group that continues meeting week after week. And it changes over time because, you know, certain people come in, they come out from the initial cohort. The initial one, you stay with the same group of, you know, eight to ten people. And then, this, the graduates group is, you know, up to, we get up to 20 people in the meeting sometimes. And, I will say it’s such a common phenomenon in either of the groups, the alumni or the newbies, I call them the newbies or the regular, you know, the initial Rheum to THRIVE cohort, it’s a common experience. 

People will say, “Well, this is probably a weird, or no one else probably has this, but,” and they’ll say what the thing is. And everyone’s like, “Oh, no, I have that too.” That’s a great thing about being in a group setting is realizing almost it’s very rare that you’re the only one. I mean, there are a couple of times when people have had things like, actually, honestly, the one that comes to mind is like a really inappropriate thing that happened to them with their, provider being inappropriate to them. And they’re like, is this normal? And we were all like, no, this is not, you know. So, it’s also good to have that, you know, group to bounce things off of. 

And another thing that comes up a lot in our groups that I didn’t like structure them this way when I started it in 2020, but is this whole idea of like discussing ableism and exploring like our identities and, you know, how realizing that you might have your own internalized ableism or, you know, ableism is prejudiced against people with disabilities or health conditions. And I know that was something you said that you wanted to maybe explore a little bit today or share. Like, how has your journey been with your identity, and confronting ableism? 

[00:42:39] Stephanie:

I think that I wanted to bring it up because it was just, you know, even now I think it’s hard for me to consider myself as someone with a disability or a disabled, as a disabled person. And, but I should preface this by saying that I, in some of my work with dog training, I work with a really lovely organization that helps people train their own service dogs. And I started, I got accepted into this program in the fall of 2023, and our first session that we had, it was like a self-paced online course, and then we had a bunch of workshops to kind of get certified to, work with their teams, and help people train their dogs. And the very first workshop was the day after I got my diagnosis.

And, I mean, they were wonderful, such a, I can’t speak highly enough about this group, but, we spent the whole, you know, it was like an eight hour online workshop day talking about like, what is disability to you? And how does ableism show up? And, I had joined this program thinking that I was going to be learning about this so that I could best serve and work with disabled people and people who have illnesses and a need for a service dog. And, I couldn’t, I just couldn’t help but sit there and be like, “Oh, I fall into that now.” And that just changed sort of the whole experience of it for me. 

And more recently, another tool aside from the Rheum to THRIVE group that’s been helpful has been one-on-one therapy. And, I was talking with my therapist about someone who was not really supporting me in the way that I wished would happen. And she asked me, like, “Do you think this person, like, understands that you’re disabled?” And I had sort of tucked that away. And it was, I was like, I don’t even know if I think of myself that way. So, I can’t, I felt like I couldn’t blame this person for not — but it’s, I don’t really have any answers.

It’s just been something that’s been kind of in the back of my mind as I’ve been learning more and as I’ve been impacted in different ways that, yeah, this is, you know, this is a disability. And so, what does it, mean for how I go about my own life and my own experiences and the people, you know, that I’ll be supporting through this program and even like my husband who, you know, has had this chronic illness for a really long time. I, it’s, pushed me to want to explore that more and to learn that more because I’m certain that there is internalized ableism everywhere that I need to work on.

[00:45:43] Cheryl:

Well, yeah. And I so feel similar to you in terms of like, it’s a process, it’s an ongoing process. And, you know, I think there are many different ways to, you know, draw a line in the sand what you consider able bodied and then disabled, but really, it’s such a spectrum, right? I’m much more able bodied than many people and I’m much more disabled than many people. We’re in kind of that, quote unquote, ‘messy middle’, right? And there’s ways, you know, you can — that so it’s, you know, often, in occupational therapy school, I remember them, one of the teachers defining, you know, something is considered a disability if it substantially impairs your ability to function in your daily life.

And I can say that there have definitely been years at a time where rheumatoid arthritis didn’t substantially impair me. And there are years, and months, and days that it certainly did. So, how do you, people like, I don’t want to say us, but since I know you, people like us who want, who have a hard time with, who want to have control and want the world to make sense and want to be able to put things in categories and boxes and, you know, like that is a really, like, how do you cope with that?

You said earlier, inconsistency or unpredictability of how do you wrap your mind around an identity if that whole identity is going to fluctuate, you know? So, and it’s hard and it’s almost, you know, like, I’ve used the example before, although this is the science is changing on this, I’ve used the example of like spinal cord injuries. There’s, like, if you have a complete spinal cord injury, at the time I was trained in 2012, it was like the complete injury is you’re gonna be paralyzed below that level. So, it’s like, there’s no ambiguity, like you’re not gonna, you are not gonna be able to walk. Like, and, there, and in a way, like, in that case, you, there are studies that show that people who become paralyzed, you would think it is something that the whole rest of their life, it’s really, it is a grieving thing, and it’s something that’s really, really hard.

But interestingly, so we do studies of people who’ve been paralyzed and people who are lottery winners, like things that you would expect would monumentally and permanently change your life set point of happiness. It’s like after a year, everyone gets back to their regular happiness set point. So, sorry. I just went off. I’m like, that isn’t even related to like unpredictability, but I think, you know, but for whatever that’s worth, again, that’s kind of comes back to this idea that there’s all these things that we would think would be so hard. And then, what’s actually hard is different, right. 

And, you know, I think, especially if you’ve defined yourself as a helper, that’s another trend I see in the groups and people like you and me, I’m the same. I went to OT school to help people, you know, that have more severe disabilities, you know. And I didn’t, I don’t, I find it, more comfortable for me psychologically to be the helper rather than being helped. Are you the same? 

[00:48:44] Stephanie:

Oh, yeah. I mean, and I just think about like my friends have been very thoughtful about, “Can I carry that for you?” or, “Can you reach that?” Or even, my mom, I was helping her with something and I had mentioned I was having this brain fog and forgetting things a lot. And so, she, the next day when I was working on this task, she sent me all these text messages with instructions. And I was like, why is she sending me all these instructions? Like, I know what to do. And I found it a little annoying at the time. But later, I, she had said, you know, I just wanted to say, that was so lovely. That was — 

[00:49:26] Cheryl:

Oh wait. Okay. So, we’re — can you repeat that last sentence? Because you froze for just a second. 

[00:49:31] Stephanie:

Oh, yes. So, she had sent me all these text messages, which I found a little irritating because I felt I knew the task. I knew what I was supposed to do. And later I was talking to her and she said, you know, I sent you the instructions written down because you mentioned you were having trouble remembering things and having brain fog. And I was like, oh, that was so nice. Like, that was just very, very sweet. And but it is hard for me to be on the receiving end of that kind of help. That’s not kind of, I haven’t really been in that place before. 

[00:50:05] Cheryl:

And humbling. 

[00:50:07] Stephanie:

It is. It is. And I, don’t know if, you know, I mean, maybe it’s just one of those things that’s going to take time. But I think even, a year into this, you know, like my Remicade is starting to work now.  And I’m seeing some nice impacts from that. And so, I’m like, I don’t think this logically, but I feel myself slipping into this, like, ‘I’m cured, so I’m gonna resume all my activities the way that I used to’. And, that’s, you know, obviously not the case and I’m catching myself with that more. But I, think it, that to me feels a lot like this sort of internalized ableism bit of like, I’m not, I am able. I’m, well, this is like a temporary thing. And, you know, it, just. It kind of sneaks in there, I feel like. 

[00:50:58] Cheryl:

Yeah. And I think there’s kind of two different buckets. There’s one in thinking that on the one hand, anyone who has experienced a health condition, it’s like you would, if I am given the door number one, door number two; door number one is like my medications work and I have less symptoms and door number two is like my medications don’t work and I have more symptoms, like, I’m going to take door number one, like it’s just a more physically and mentally comfortable existence, right?

But so, there’s like, there’s nothing wrong or ableist about preferring not to have an illness. That’s, I believe, you know, that’s a very human thing, right? On the other hand, there’s assuming or pressuring yourself to have that hero’s journey and cure it or get rid of it and assuming operating under the assumption that the only way to have a good full life is by it going away and that the disability is the problem, you know, in all ways. And I think that’s the more ableist way, in my opinion, again. 

[00:52:01] Stephanie:

I love that you clarified that because I think that’s exactly how I feel. And if you asked me to apply that to anybody else, I would say, well, no, of course not. Like, yeah, no, but, the experience of living it has been — yeah, I’m learning a lot.

[00:52:20] Cheryl:

Yeah. Thank you for these lessons. But yeah, there’s, I am, my friend Paul likes to quote this like old Japanese curse called like, it just says like, “May you lead an interesting life.” They consider it like a curse, you know what I mean? Like, this is the price I pay for an interesting interesting life. Well, and I’m just being mindful of time. I want to ask you a little bit more about service dog training or just dog training and then go to the rapid-fire questions. I know we’ve had Lauren on the podcast before who actually helps Arthritis Life. 

[00:52:53] Stephanie:

Yes. I listened to that one. 

[00:52:55] Cheryl:

Oh, good. Yeah, she does, from dog training, her episode is ‘From dog training to occupational therapy: Lauren’s ankylosing spondylitis journey’. You know, so she talked a little bit about that. But is there anything that, you know, I get asked about tips for dog ownership when you have a chronic pain condition. Is there anything you want to share in terms of the tips or also just in general, like, your experience with the power — I’ve had my first dog. He’s a five now and it’s been amazing. So, I’m also just like, we can just talk about dogs too, because that’s fun. 

[00:53:31] Stephanie: 

Oh, I could, all day. I would be more than happy. Also, he’s a Cavalier King Charles. So, that’s just one of my dream breeds. They are so lovely. 

[00:53:40] Cheryl: 

If only Massachusetts was closer to Seattle.

[00:53:43] Stephanie:

I know. I know. Got to meet him someday. He’s so sweet. But yes. The as far as like living with a dog and having arthritis, I think I’m sort of picking up things as we, as I go. And that podcast has actually gave me some good ideas. I think a hands-free leash has been a game changer for me. There’s so many different kinds out there, but I’m out walking a lot. And, So, that’s been a big part of it. I think I’ve been a lot more thoughtful about my positioning because I do a lot of training, like I interact with my dog a lot and I interact with other people’s dogs. So, I’ve been thinking about like, how long am I standing? Can I sit? Are there different positions that I can be in that will be a little bit more comfortable for me? 

I am, now that it’s winter again, I’m thinking about like gloves and hand warmers and ways that I deliver treats. Listeners won’t be able to see this, but I often will deliver treats in a pinched, between like my pointer and my thumb. And now I do a lot more in my palm, because I have more pain in my hands and my wrists. So, it’s easier for me to, do that. So, those have been sort of little things that I’ve picked up along the way. 

As far as sort of the service dog stuff, I think this organization that I’ve been working with is Atlas Assistance Dogs. And one of the things that I love, love, love about them is they are — accessing a service dog for someone who needs it can be really great challenging. There are a lot of like strict medical criteria. Sometimes the wait lists are very long. And so, they are trying to make service dogs more accessible by helping people who have an appropriate dog to train that dog, and at a really low cost. I think there’s definitely a, there’s a lot of people out there who want to be able to bring their dogs everywhere and who would benefit from a service dog, but maybe their dog isn’t the right fit. So, they do a really nice job of balancing, trying to help anybody who would benefit from having a service dog to train their dog to do that as long as their dog is appropriate for it. And, I think that is something that I have not seen a lot of in the service dog space. And so, I love, I just love seeing an organization that’s really living their values. 

And, I am a certified facilitator, so I can work with their teams to help. But I am going through a service dog training certification so that I could more formally help people train service dogs. So, that’s something kind of up and coming. I’m really excited about it. I think it’s been really, humbling. It’s been really an honor to get to work with all of these incredible people and their incredible dogs. And so, it’s been a big joy for me and not an area when I started out that I thought I’d have such a connection with, but something that feels really meaningful now. 

[00:56:50] Cheryl:

That’s really wonderful. I, yeah, I always assumed that you’d have to train a service animal from when they’re a puppy. I didn’t think about the possibility of taking a family pet and then training them. It makes, a lot of sense. Like you mentioned, more efficient, cost effective, and I love that. So, that sounds amazing. I’ll definitely put a link to them in the show notes. Well, this has been so great. Yeah, we could talk for hours. But one of the rapid-fire questions I love to ask is what are your best words of wisdom or advice for newly diagnosed patients? Which is a position you were in less than a year ago.

[00:57:30] Stephanie:

I know. I think… I think I would say finding support, wherever it is, probably been the most impactful for me, and whatever that looks like for you. I mean, for me, I need information, and I care a lot about science and having evidence-based. But, you know, there’s so much to be said for just someone who gets it and who can really help support you. I think that’s probably been the most impactful thing. And I guess, you know, for me, personally, what the wisdom I would say to myself if I could go back in time is like, just keep at it. Which is maybe not the right advice for everybody, but for me, it was really helpful to, like, it was hard to make that third rheumatology appointment, being so disappointed with the providers I had seen before, but that was the one that got me kind of where I needed to be. So, I think sometimes I’ve had to stop and rest, but kind of the persistence has been helpful for me.

[00:58:35] Cheryl:

That’s so helpful. I definitely, I’m very impatient. So, I find it hard to do that. Sometimes I’m like, oh — or I’m like weirdly optimistic. I’m like, it will probably work out with this one where if I like then flash forward two, three years in the line, you had to change anyway, because it really wasn’t. So, you’re actually better off spending the time up front finding a good fit, the provider. Do you have a favorite, like, mantra, using that term very loosely, or like inspirational saying for tough days? 

[00:59:10] Stephanie:

I don’t know that, I don’t know that I have a specific mantra. I think it’s more like a cycle of things that I try to remind myself. I mean, I feel like I’m constantly just like acceptance, acceptance, acceptance. Yeah. You know, like it’s, it’s just these like little one-word things that I’m like, okay. You know, like, slow down. For example, I felt pretty good this weekend. And I was like, you know what, maybe I can start hiking with Kirby, my dog, in the mornings again. Like, I kind of, I’ve kind of given that up. We walk now in the afternoons. And I was like, I think I’m ready for this. And then, I spent one day out in the cold. And was on the couch for the whole rest of the day. And I was like, okay, acceptance. Like, this is fine. You know, it’s not the way I want it to be. So, you know, I think, less than a mantra, just more like little reminders.

[01:00:08] Cheryl:

Yeah, I like that, like a concept. I remember one year, I listened to a podcast. I have no idea. I have no concept of time with COVID. But it was like, instead of making a resolution, like think of a word for the year. Like, think of the word you want to come back to and like mine was like ‘Presence’ and I’m still working on that or like ‘Flow’, like being able to go with the flow and, like, and acceptance is obviously a big one for me, too. So, I love that you already mentioned the hands-free leash, but do you have another favorite arthritis gadget or tool in your toolbox? 

[01:00:43] Stephanie:

Let’s see. Right now, I think my most favorite little thing right now is my zip hoodie. I have this hoodie that the arm, it has a zipper along both of the arms. So, on infusion day, you don’t have to be freezing cold and they can still access your veins. So, that has been a good one, but I will say that, this has been another plug for the group. I feel like anytime I’m like, Oh, I need something for this. I’ve been able to go and search my emails because you always put the links in there for things people talk about or recommend. And I always find something like that’s how I found my compression gloves. That’s how I found my ice packs. I have a lot, I have a nice little amassed set of gadgets now because of that. But I think my favorite at the moment is my hoodie. 

[01:01:36] Cheryl:

I love it. And yeah, that, you were the first person to introduce me to those infusion-friendly hoodies. So, yeah, I hadn’t heard of those before. So, that’s awesome. Yeah. Thank you. 


[01:01:46] Stephanie:

The algorithm brought it to me. 

[01:01:48] Cheryl:

It is scary. The algorithm is so scary right now. Do you have a favorite book or movie or show you’ve watched recently? 

[01:01:57] Stephanie:

Yes. Yes to all three of those actually, if I can. I won’t take too much time. Movie is Marcel the Shell with Shoes On. Oh, my gosh. So good. I watch it once a month. I just, like, I feel like that’s my mantra. I just, that movie, just, it’s heartwarming and just like a little hug. I really love it. Show, I’ve been watching Heartstoppers on Netflix which is also like a warm hug. That’s been very, very fun. And then, the book, this fall, summer, I was introduced to, this is a fantasy or romantasy series. The first book is The Fourth Wing. 

[01:02:40] Cheryl:

Yeah. Oh, that was intense. 

[01:02:43] Stephanie:

Yes, I feel like that book just, it met me at the right moment. It has a character that has a chronic illness disability. And it was just like lovely escape with, like, it just, it checked off all the boxes for me in terms of kind of where I was and I haven’t had a book that I’ve devoured in that way in quite a while, so.

[01:03:08] Cheryl:

So. Those, that was a page turner. That was where I couldn’t sleep because I have to know what happens. And I was like, no, this is important. What happens is important. Yeah. Awesome. Thank you for sharing. And then last one, what does it mean to you to live a good life and thrive with rheumatic disease?

[01:03:31] Stephanie:

I feel like this has been the hardest question, because I’m still figuring it out. I’m still, I recognize that I am still clinging to the way that I set up my adult life before RA. And, you know, things like morning routines and what I do with my friends and, you know, where I travel. And I’ve had to make a lot of adjustments to those things in the last year. And so, I think that the answer to that question is like somewhere in the midst of that, you know. It’s figuring out how, like, maybe I just don’t know the answer, but I’m trying to figure out like how can my life still be meaningful? Can I be living consistently with my values? And if I have to give things up, like what fills those spaces for me? I think that’s, yeah, that’s kind of where I am with it. I know it’s not kind of a rambly answer, but what I’ve landed on, 

[01:04:32] Cheryl:

No, not at all. I relate really hard to this. I actually had this quote, I’m going to read you a quote if this is okay. This is a quote I had up in my room in high school. I don’t even know what I was relating it to back then, but I feel like it relates so well to chronic illness. It’s a quote from, I don’t know who this person is, Rainier Maria Rilke, from Letters to a Young Poet. It says, “Have patience with everything that remains unres —” oh, sorry. “Have patience with everything that remains unsolved in your heart. Try to love the questions themselves like locked rooms and like books written in a foreign language. Do not now look for the answers. They cannot be given to you now because you could not live them. It is a question of experiencing everything. At present, you need to live the question. Perhaps you will gradually, without even noticing it, find yourself experiencing the answer on some distant day.”

[1:05:31] Stephanie:

Oh, I love that. I think that is really perfect. 

[1:05:35] Cheryl:

Yeah. I say that a lot to myself, like, try to love the questions themselves. Like, and also there’s that quote, “At sunrise, everything is luminous, but not clear.” That’s like, Norman McLean, “At sunrise, everything is luminous, but not clear.” And then, it’s kind of about other, it’s about the next part is kind of social, which isn’t as much for me about arthritis, “But at sunrise everything is luminous, but not clear. It is those we live with and love and should know who elude us. You can love completely without complete understanding.” That’s, I guess, that’s from A River Runs Through It. But that one I repeat, I kind of repeat just the first and last sentence, like, at sunrise, everything is luminous, but not clear. You can love completely without complete understanding because it’s like, I don’t understand what’s happening in my body right now, but I still love it, you know? 

[01:06:27] Stephanie:

Yes. That feels like that’s the answer. 

[01:06:32] Cheryl:

Yeah, yes, I can kind of hear my therapist kind of saying in my head saying something like, you know, understand that is going to be a part of you and that wants things to be predictable and wants things to be the way they were. And that’s understandable, but also that living a good life is being able to be flexible and adapt to the present moment. And again, you might, maybe within another month, like, Remicade will put you into a full remission and then you’ll have a period where you’re living, quote unquote, ‘your old life’. And that’s totally, you know, great too. And, but like, I think nothing’s permanent. So, learning to go with those ebbs and flows. It’s huge. 

[01:07:18] Stephanie:

That’s, I feel like that’s been the whole thing. 

[01:07:22] Cheryl:

And I definitely think that chronic illness has made me a less rigid person. Like, no one who met me in a social context would consider me rigid, but I am rigid and, or I tend to be rigid in terms of like, this is the plan. I make the plan. I stay with the plan. Like, and I don’t deviate from the plan. And chronic illness —

[01:07:40] Stephanie:

Yeah, I was just gonna say I am learning that is true of myself as well. 

[01:07:43] Cheryl:

Yeah, that’s a lot of highly capable people are like that. They’re productive, they do stuff, they get stuff done, you know. But also, that way of life is not sustainable, even for able bodied people, but certainly not for people with, you know, disabled people with disabilities, you cannot predict and plan everything. You just can’t. So, you have to learn how to go with the flow. And, yeah. It humbles you, as I said earlier. So, last question really, actual last question, where can people find you online? This is not a deep question.

[01:08:18] Stephanie:

Oh, yes. This is an easy one. I’m on Instagram at @SHPhelan, P-H-E-L-A-N. And, that’s probably the best way to find me. But also, for my dog training, it’s the Dog Behavior Institute. And so, thedogbehaviorinstitute.com, and certainly we have a page on our website about Atlas Assistance Dogs too. So, we can send you that if you want. 

[01:08:45] Cheryl:

Yeah. And I also, you sent me a really, a link to a really great blog post you wrote, you know, why Disability Pride Month hits differently this year. 

[01:08:56] Stephanie:

Yes. Yeah, I, wrote a little bit about that, the experience of going through their program after just having been diagnosed. 

[01:09:04] Cheryl:

Yeah, so it’s a really powerful article, so I definitely recommend people check that out. And it relates a little bit to our conversation about, you know, disability identity, ableism, and stuff like that. So, thank you so much for your time. I know this, we covered a lot of ground and I just, yeah. I’m very always very grateful to people, for people taking the time to share what’s often a very emotional journey, you know, and sharing your vulnerability and your insights. It really helps others feel less alone, including me. So, thank you. 

[01:09:39] Stephanie:

Oh, thank you. I have gained a lot from hearing other people’s stories. And so, if I can, if I can add a little bit to that, I’m, so happy to be able to do it. 

[01:09:50] Cheryl:

Now you’re part of The Arthritis Life canon, as they say. 

[01:09:53] Stephanie:
I accept. 

[01:09:55] Cheryl:

Yay! Okay, thanks so much and we’ll catch up with you later. Bye-bye for now.

[01:10:00] Stephanie:

Thank you. 

[01:10:01] Cheryl: 

Bye.

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