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Patient Stories, Podcast, Provider Interviews

Developing Resilience With Axial Spondyloarthritis: Cayla’s Story

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Summary:

In this episode, Cheryl chats with Cayla Alexander, a rheumatology nurse practitioner who brings both medical expertise and personal insight to the discussion. Cayla shares her journey with axial spondyloarthritis, including the challenges and delayed diagnosis she faced as a young adult. 

She explains the key role nurse practitioners play in rheumatology and highlights the lifestyle habits, like movement and nutrition, that have made a real difference in her own health. Cayla also offers practical advice for communicating with healthcare providers and supporting yourself after a new diagnosis. 

Her story is an inspiring reminder that living well with a chronic illness is not only possible, but achievable.

Episode at a glance:

  • Cayla’s personal journey with axial spondyloarthritis and the challenges of getting diagnosed young
  • How nurse practitioners support patients in rheumatology
  • Lifestyle tools Cayla uses to manage her condition, including exercise and nutrition
  • Tips for communicating effectively with healthcare providers
  • Encouragement and practical advice for those newly diagnosed
  • Insight into living a full, meaningful life while managing chronic illness

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:

Cayla Alexander

Cayla Alexander is a rheumatology nurse practitioner. She completed her doctorate at UW in 2020, and after finishing a primary care residency program, has been working in rheumatology for the last four years, with Dr. Philip Mease at Seattle Rheumatology Associates. She finds the field fascinating and would likely have found her way to rheumatology anyway, but took the fast track when she was diagnosed with ankylosing spondylitis in college. She is excited to be here!

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for over twenty 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 Transcript:

[00:00:05] Cheryl Crow: Hey, I’m so excited today to have Cayla Alexander, who I first met in person six years ago at an arthritis advocacy event. But Cayla, can you first let everyone know where do you live and what is your relationship to arthritis? 

[00:00:26] Cayla Alexander, NP: I live in Seattle, Washington and my relationship to arthritis is that I have it.

[00:00:32] Specifically ankylosing spondylitis or as it’s now known, axial spondyloarthritis. And I also treat patients with it. So I work in rheumatology alongside Dr. Philip Meese at Seattle Rheumatology Associates. And he does a ton of research within the spondyloarthritis fields. And so, we see a lot of patients with it.

[00:00:53] Cheryl Crow: That’s amazing. And I, we’re gonna get more into your training and how you specialized in [00:01:00] rheumatology. But first, can you let us know your own personal diagnosis, story slash saga for axial spondyloarthritis? 

[00:01:10] Cayla Alexander, NP: Yes. So I took the scenic route to diagnosis as many of us do with inflammatory disease especially with spondyloarthritis.

[00:01:18] And my symptoms started when I was 17 or so when the diagnosis came about in my first year of my doctorate program when I was 27. So, in the interim 10 years, I had seen an orthopedist for peripheral joint swelling, physical therapists, and sports medicine. I had bought three mattresses in one year because I was waking up overnight from back pain.

[00:01:44] And part of that big delay, I think, especially for those first five years was the symptoms were really mostly at rest. And I was really active exercising most days in the morning. And so I think in that way I was self-treating a lot of [00:02:00] the pain. And then as time went on, like in my early twenties, mid twenties, it definitely became more of a problem.

[00:02:07] I remember one time, well, it was like two in the morning, I had woken up from pain and kind of a routine thing. I would just have to do squats in my dark bedroom at two in the morning and then I’d be able to go back to bed. And I remember one night thinking this seems abnormal, actually. Like maybe this is not how everybody is.

[00:02:27] Yeah. So it was definitely partially self-inflicted. I think the delay, I just wasn’t really seeking the care that I should, because at that age, a lot of people they’re not all that interested in spending time in doctor’s offices unless something is very urgent. And it didn’t feel that way to me because during the day I didn’t have a whole lot of symptoms.

[00:02:47] But the diagnosis itself finally came when I went to see a very astute rheumatologist for an entirely different reason. I had some abnormal labs come back, and primary care had referred me to rheumatology, so I wasn’t [00:03:00] even there to talk about my symptoms. But that whole, the abnormal labs turned out to be nothing.

[00:03:05] But the rheumatologist had done a joint exam and found my knee was swollen and asked a bunch more questions about that. And then sure enough, the next day on X-rays erosive sacroiliitis in the SI joints and the diagnosis came. Then it all started to make sense once I had the name of this and could read about it.

[00:03:28] But that’s been the primary problem. And then over time I’ve collected a few of the fellow travelers psoriasis, Rays, Sjogren’s but Spondyloarthritis has been the captain of the ship. 

[00:03:41] Cheryl Crow: Oh, that’s a beautiful, I mean, unfortunately we have to be poetic sometimes. That’s a poetic way to put it.

[00:03:48] And I think your story is so common for younger people. I similarly I was diagnosed at 21, but I had all these random symptoms that I didn’t think [00:04:00] were interrelated at all. And I was going to gastroenterology for this. I, I was okay, my situation’s a little different ’cause I was diagnosed with gastroparesis and then rheumatoid arthritis like in a year long period.

[00:04:11] So I did have two different diseases, but some of my symptoms like the wasting away my muscle wasting, I thought, oh, that’s because I’m not able to eat enough ’cause my stomach isn’t working. But it actually was rheumatoid cachexia. Cachexia, what you get from rheumatoid arthritis, your muscle wasting from that.

[00:04:28] But I was like, I had a swollen finger that I just was not even mentioning to anyone ’cause it was no big deal to me. I mean, I’m like, I guess this is weird. I sprained my finger accidentally somehow. Anyway, everyone who’s listening , who maybe has already heard my story and is bored by it, but but back to your story,. I think it’s, I had people come into my support groups before and say something like, is it normal?

[00:04:46] A mid twenties person being like, is it normal to have x, y, z kind of pain? And I’m always like, it’s not normal to have pain in your twenties. You should not be settling for that. Right. But you don’t know when it’s, when you’re, 

[00:04:58] Cayla Alexander, NP: yeah, that, that age is [00:05:00] just so hard when all of your friends are going out to parties or like moving forward in their career and you just wanna be keeping up.

[00:05:07] And even patients it’s a pretty classic thing, like with JIA who have had a much earlier diagnosis and then in that period of time, in their late teens and early twenties, they’re just off of all their medication because the last thing you wanna do is even be acknowledging that you have this chronic illness when you’re that age.

[00:05:24] Cheryl Crow: That’s so true. Yeah. So that leads me to my next question, which is, you went from kind of having all these disparate symptoms and not knowing why, and then now you have a reason and at diagnosis, what was your emotional response to that? Were you relieved or were you nervous?

[00:05:39] Or A big mixture of emotions. 

[00:05:42] Cayla Alexander, NP: I think it was predominantly denial a little bit or a lot for probably a good year. And the reason for that, I had just moved to Seattle from California like a month before, and I started my nurse practitioner program, like the [00:06:00] day before this rheumatology appointment, I hardly knew anybody in the entire state.

[00:06:05] And so there was all this change already and I just could not cope with this on top of it. And so I just said, I’m gonna pretend that’s not happening for a little while. But over the course of a year and I can process it a little bit more, learn about the disease, really think about how this was affecting my life in ways that I didn’t want to admit.

[00:06:27] And then as I thought about it and got more used to the idea, it really made so much sense. 

[00:06:33] Cheryl Crow: Yeah. Did you go on any treatments like right away or, 

[00:06:37] Cayla Alexander, NP: No, I know I didn’t. I was, at the time, I was working in public health and doing working with active TB patients, like act like coughing up blood type, active tb.

[00:06:49] And so I was just not in the space of I don’t know the TB risk is variable with the different biologics, but the one that was offered to me at the time had a, the highest risk. And [00:07:00] so I was like, well then if I go on this, then well, I have to change my job even, it was just this cascade of change I couldn’t really cope with.

[00:07:07] And I thought, well, I’ve coped with the disease for 10 years at least. I can manage at least for a little bit longer. 

[00:07:16] Cheryl Crow: Wow. I, and I actually didn’t know that you already had decided to become a nurse practitioner before your diagnosis. What made you want to pursue that field? And I, and we’re gonna take a, we’re gonna get back to your personal story and especially into some of your expertise, like the lifestyle methods that have helped you.

[00:07:32] But I think it’s a good learning point for the listeners to know what is the role of a nurse practitioner in rheumatology. Sorry. So I just asked four questions. Why did you become a nurse practitioner? And then what do nurse practitioners do to help people with arthritis? 

[00:07:47] Cayla Alexander, NP: Yeah. Well, in hindsight.

[00:07:49] Honestly, I think it had the choice to go on to nurse practitioner school had something to do with my difficulty practicing inpatient medicine as a [00:08:00] nurse because of this disease. Like I really liked the fast-paced, intense environment of inpatient medicine, but it was so hard on my body, like the flexion of the spine, moving patients up in bed and bending, and 14 hour shifts by the end of the day on your feet and the sleep disruption.

[00:08:16] And I just I remember looking around like, how is every, there’s these 50-year-old nurses doing this, how come I can’t do this? In hindsight, I think that was more subconscious at the time, but I was drawn to outpatient medicine and public health and did that in California. And then the NP rule just really made so much sense from there, because I love the diagnostic challenge of it.

[00:08:39] I love the follow through. Seeing the patient, starting with what symptoms they’re having, ordering labs, imaging, figuring out what’s going on. That’s just very intellectually engaging to me. And then treating that, seeing how the symptoms respond and the continuity. Just getting to know people over years and years is really fulfilling.[00:09:00] 

[00:09:01] Cheryl Crow: That makes a lot of sense. And just a tiny little learning point from some people listening might have just literally gotten their diagnosis like a week ago and not know a lot about the health system. So inpatient means you’re staying overnight at the hospital and outpatient means you walk in and out.

[00:09:15] So most people with inflammatory arthritis, whether it’s like rheumatoid, like I have or axial spondyloarthritis, what you have, we’re usually getting care outpatient. We’re usually driving up parking, going to the clinic, coming out. Although if you’re more severe have other comorbidities, you may be hospitalized for it, but it really is a different.

[00:09:34] It on the provider side, like I’m an occupational therapist, so it is a totally kind of, almost like a different little world where you have people that are, sick enough to need that hospitalization versus people that are yeah out and about. And and I think, sorry, back to the, I think defining the nurse practitioner role, like first, why what’s the difference between a unquote, I know there’s like a million kinds of nurses.

[00:09:55] There’s like CNA, NAS dah, like all the different but what you [00:10:00] kind of explained that nurse practitioners can do a little more on the diagnosis and prescribing. And what would be the way that you would explain the difference between a nurse practitioner, capital n, capital P versus like another nurse?

[00:10:12] Cayla Alexander, NP: Yeah, that’s a really good question. I wish patients ask that more often actually ’cause it’s really important, especially in rheumatology. Everybody is a complex patient and you really need to have confidence in your care team. So just even asking that, like what is a nurse practitioner?

[00:10:27] So my training specifically I was a nurse first. I worked as a nurse in California and then the graduate school program I did was a doctorate program to become a nurse practitioner. And then that was three years after that, I did a residency program, which was in primary care at the VA here in Seattle.

[00:10:47] That was a year. And then after that I did a fellowship through the American College of Rheumatology, which is a year where it’s not the most structured. It’s not as extensive as the rheumatology residency [00:11:00] and fellowship by any means. But it’s a year where a rheumatologist takes you under their wing and they set aside time in their schedule.

[00:11:07] It’s paid for by the a CR so that they can precept you. But the role itself can, is very variable across definitely throughout healthcare, but definitely even in rheumatology. I’ve worked with several rheumatologists now and the role has been a little bit different each time. But in terms of actual function we help people with arthritis very similarly to how a rheumatologist does.

[00:11:31] So we can order all the lab tests, the imaging, interpreting the data from that, making the diagnosis, deciding the treatment options, drug monitoring, all of that. At my current practice, there’s another NP and a PA, and they’ve both been with Dr. Meese for decades. So the three of us the two nps in the PA, we have our own schedule.

[00:11:54] And then Dr. Meese comes in and sees the patients that we want him to like new patients or we [00:12:00] want a second eye, second set of eyes on something. So he doesn’t have his own schedule. He’s free of all the charting and everything. Yeah. And then that frees him up really to focus on all of the amazing research that he does.

[00:12:14] But that looks very different than maybe other rheumatology practices where you might be seeing a rheumatologist one visit and then an NP the next visit, and then the rheumatologist, the next, they share the panel that way. 

[00:12:26] I know of other practices where they’re separate panels, so the nurse practitioner sees only their own patients and you, they may never see the rheumatologist.

[00:12:35] So it’s really variable, but I think it’s very appropriate for a patient to say what is a nurse practitioner? When, yeah, not sure. 

[00:12:45] Cheryl Crow: Or even like a physician assistant, a PA, a physician assistant, and these are just, if in the biggest kind of 20,000 foot view, it’s like the way I think of them as a patient maybe and a little bit as an OT is like advanced practice.

[00:12:59] People who [00:13:00] have the authority and the training to prescribe me medications and be in charge of my treatment plan independently of a rheumatologist or in conjunction, maybe I don’t know all the nuts and bolts, but that’s in my head, kind of like where the distinction is versus a not advanced practitioner nurse would maybe be like assisting with the treatment plan that the, ultimately the rheumatologist is still overseeing.

[00:13:26] Would that be the right way to say that? 

[00:13:28] Cayla Alexander, NP: Yeah. That’s exactly right. And it’s every practice is different. So clarifying that as the patient is great. We’re always open to that. I’ve had patients where I’ve been seeing them for a year or two and they tell me they thought I was the medical assistant for Dr.

[00:13:43] Meese after two years. 

[00:13:44] Cheryl Crow: Oh wow. Yeah. 

[00:13:46] Cayla Alexander, NP: We could have clarified this ahead of time. 

[00:13:48] Cheryl Crow: Well, and so it same happens with OT where like I saw a kid for two years and the parents were like, you’re such a great physical therapist. I’m like, oh, I’m actually an occupational therapist. But like at the end of the day, it’s nice lady who helps me, but depending on the person, they may really [00:14:00] want to have their training recognized as what it is. But yeah, and I think it’s, I had Dr. Corey doing who I know you have definitely know, also Seattle based, our nurse practitioner. She came on the podcast earlier and kinda explained a little bit about how the nurse practitioner training is holistic in, in a different kind of way than like maybe the rheumatologist training. So I’ll just refer you to that episode if you wanna learn more about that. That’s episode 70. Wow. It feels like it wasn’t that long ago, but it was 70. And also Stephanie Remson is another nurse practitioner if you wanna learn from her.

[00:14:36] She also has rheumatoid arthritis, so she’s I’ve interviewed her too, so I’ll put those in the show notes. But basically you’re doing a lot of the same stuff as a rheumatologist to put it very succinctly. Right? So that’s something that sometimes a patient might have this perception that, oh, I’m not getting the quote unquote the doctor, I’m getting someone who doesn’t.

[00:14:54] And your training is different, but you do have the authority to do a lot of the same things. [00:15:00] So now transitioning to your back to your journey as a patient. I know something that before I have anyone on the podcast, I ask them, what are the things that you’re most passionate you know about sharing with other people listening.

[00:15:13] The majority of people listening are people who have lived experience with as a patient just like we do. And so what, like lifestyle modalities have been helpful for you in managing your axial spondyloarthritis? 

[00:15:30] Cayla Alexander, NP: I think far and away the first thing has been exercise. And in hindsight, like I mentioned, I think I really was just self-treating that way for a number of years.

[00:15:40] But having a real exercise routine, like cardio, strength, mobility, all of it. I think without that I wouldn’t do nearly as well as I do. Even if a few days goes by where I don’t exercise, I really notice both with pain and fatigue and research shows this as well. If you’re gonna [00:16:00] do one thing in terms of lifestyle, get the most bang for your buck it should be exercise.

[00:16:05] And having arthritis, I think can be so deconditioning because our natural response to pain oftentimes is to immobilize, like when we’re sick, when we’re in pain, we have the flu, we have muscle aches, we just wanna lay on the couch, but what that does over time, as your muscles atrophy and get weaker, the fatigue gets so much worse because then even walking out to the mailbox is just exhausting if you don’t have good muscle strength.

[00:16:31] And then the joint health is like the degenerative process of the joints is accelerated just because they don’t have the muscles to support them. So it becomes this whole downward spiral. So the exercise, I would say is the first thing. Diet is also very helpful for me. I know other people have done everything, with every possible diet they can and they don’t get anything out of it.

[00:16:52] So it’s not, I don’t think a silver bullet for everyone, but it’s not as helpful for me with pain as it is for fatigue. I [00:17:00] think if I am on track with diet, my energy is better. I have a better sense of just that wellbeing, like that kind of interest in life, that doesn’t, we don’t really measure that very well in healthcare, but I find that diet is very helpful for me with that.

[00:17:16] Yeah, and it’s hard, like I said, with other people trying so hard with different diets and nothing really has helped. It’s hard to make good recommendations across the board. So I know what works for me might not work for somebody else and we don’t have maybe the most robust data to guide us in making those recommendations.

[00:17:34] There’s some evidence for the Mediterranean diet. I wonder sometimes, like if that’s kind of a result of this ethnocentric allocation of research dollars. If you studied most traditional diets going back several generations around the world my guess is most of them would have some anti-inflammatory benefit once you get back to Whole Foods.

[00:17:55] Mostly plants, some omega threes.

[00:17:58] Cheryl Crow: Yep. Yep. And it’s the [00:18:00] lifestyle too of where the Mediterranean diet is occurring, it’s, they’re walking more they’re having a different whole healthcare experience because of, socialized healthcare and all that stuff. So I do know that, yeah, there’s a little bit of a correlation versus causation.

[00:18:16] I don’t know if you use these, I really like the guidelines from the UCSF, OSHA Center for Integrative Health for Rheumatic disease. ’cause they’re very much like whole food, plant-based. It’s like what you would imagine, right? It’s just very it’s and plant-based doesn’t, or plant focused doesn’t mean vegetarian or vegan.

[00:18:35] It just means that you were getting a lot of your meal. Maybe it’s 50% of your plate, I think they say, from some sort of plant. 

[00:18:43] Cayla Alexander, NP: Yeah, exactly. 

[00:18:44] That’s pretty much, yeah what I do. That’s my diet pretty much. 

[00:18:48] Cheryl Crow: Okay. Yeah, because that was my next question.

[00:18:49] Yeah. I mean. I think that’s, I’ve said in my own experience or just, I think it’s, I have a huge confounding variable of also having gastroparesis, which makes certain things [00:19:00] I can’t eat. A lot of like legumes and like cruciferous vegetable stuff that just irritate my stomach.

[00:19:05] But even when I’ve, tried certain diets for arthritis, I don’t personally notice a one-to-one relationship between a food I consume and my rheumatoid arthritis activity that, but, so that doesn’t mean though, that food doesn’t matter for my overall health, having a rheumatic disease, I know that.

[00:19:23] I am more at risk for cardiovascular disease. And so I am, I’m eating a try to, I’m trying to do a 80 20 thing where I’m like 80% of the time. ’cause I can’t go for a hundred percent because I just know my personality. I’m just gonna feel like I’m gonna fail. So I’m doing like 80% kind of the whole food plant focus that is the kind that my body tolerates.

[00:19:45] Like my body’s really weird, it’s like cooked carrots but not raw carrots. So, kinda a little bit of a low FODMAP type thing. But, and I do that because it helps my stomach but also helps I know my overall rheumatic disease health, even if it’s not for symptom management, it’s [00:20:00] not like I notice my joints swell or don’t swell if I eat dairy or gluten or something else.

[00:20:04] But so I think that’s kind of a nuance. At first I thought, oh, well if I’m, my diet isn’t really helping my symptoms, I’m like, what’s the point? But then when I understood the systemic nature of it and all these other things were more likely to have like cardiovascular events

[00:20:18] it makes it even more Well, it makes exercise more important.

[00:20:20] Cayla Alexander, NP: Yeah, that’s exactly right. 

[00:20:22] Cheryl Crow: Yeah. Yeah. Do you, is there any other resource you recommend for your patients who want to learn more about diet? Do you or, I mean, the OSHA center is the one that I refer for people normally, but Yeah.

[00:20:33] Cayla Alexander, NP: At that one I’ve seen, and also the Arthritis Foundation on the website, there’s a couple pages on diet. But I think truly, like this is one of those instances when robust data, so like the type of evidence that is accepted in western medicine, like these placebo controlled, randomized clinical trials diet will just never get there. You can’t placebo control food when we don’t have [00:21:00] that. I think at least in this instance, we can really rely on the wisdom of the body. Like how do you feel after you eat this meal and throughout your life, kind of comparing if I eat this whole foods plant-based meal, how do I feel compared to when we go out and get burgers?

[00:21:19] And that using that as your guidepost more than any other type of list on the internet, I think that’s where you’re gonna get the most out of it. 

[00:21:30] Cheryl Crow: That is such a beautiful point. And it’s not really one, I don’t think anyone is. Okay. I’m not trusting my own memory, but it’s not one that I’ve heard very recently.

[00:21:39] So, I really like that. And I think what immediately came up for me when you said wisdom of the body and listening to your body and how you feel is this phenomenon I’ve noticed in myself and the people in my education support programs. Sometimes they’ll say, I’m so detached from my body because it’s been my, just denial is a coping mechanism that works short term.

[00:21:59] It doesn’t [00:22:00] work long term. What’s the word, depersonalizing yourself or detaching from your body can be a short term coping mechanism for pain. And so you’re like, I don’t know what is I remember one time my therapist asked me like, where I felt my anxiety in my body and I was like, in my brain, that’s like my feeling center is my brain.

[00:22:15] She was like, but where in your body? I was like, the brain, like my head. 

[00:22:20] Cayla Alexander, NP: Yeah. That’s such a good point. It’s very like to disassociate from our bodies when we’re in pain and our body is not under our control. Like it’s going crazy. It’s not doing the thing that we say, why would we listen to it?

[00:22:31] And that is a very natural, normal response I think to work through at initial diagnosis. But as time goes on, I think we can pay attention to our bodies in a really healthy way. And this is one of them. 

[00:22:42] Cheryl Crow: Yeah, something else that I met this really nice doctor from Oregon and he like, shout out Pacific Northwest, and he and I were talking about how he was saying a lot of his patients Dr. Jones, hi, if you’re listening. He was saying that, a lot of his patients feel like the way [00:23:00] that their rheumatic disease is explained to them is that their body is fighting themself and that their body is at war or that my body’s attacking me, and that’s, he was trying to find new ways to explain it that don’t feel like you’re, in that attack position, because then you’re just gonna depersonalize more.

[00:23:20] Cayla Alexander, NP: Right. Yeah. That’s such a good point. Yeah. 

[00:23:22] Cheryl Crow: And so I said that I actually made this image for social media a while ago to explain in my head how I think of it. Which is, and actually I did it in the course my self paced rheum to thrive course, which was I imagine my cells as like well intentioned. Well, I imagine my like T-cell and all my other little immune cells that are doing the wrong thing as like these cute little blobs.

[00:23:46] You know how you learn about the immune system as a kid, and you’re like, it’s like Pacman, and I’m like, they’re just these cute little blobs, but like their eyeballs are like pointing different directions, and they’re like trying, they’re like, I got this. And then they go to the wrong area, like they’re trying, they just made an honest [00:24:00] mistake and, it’s still I think of my body as trying its best and like it’s perfectly imperfect, 

[00:24:05] Cayla Alexander, NP: yeah. No that’s so great. I had never thought of it that way. That’s perfect. It’s the way I like to personify a lot of the thoughts that we can have about the, which goes to a different lifestyle modality with stress management that I’ve historically been just awful at.

[00:24:21] But that’s one the things that has been helpful is imagining like when you’re in pain, when you’re in the throes of it, it’s part of our evolutionary protective mechanism to need to figure it out right now and to kind of exaggerate this is the end of the world. You can’t live like this.

[00:24:37] You’re in so much pain and it’s a protective mechanism. Our brain is trying to support us out of this. We need to find the answer. But it’s not really all that helpful to have those thoughts against the evidence of, I’m actually on a medication that takes three to four months to work, and that seems like a really long time, but time will pass.

[00:24:57] So using that kind of a an idea, [00:25:00] I, there’s that movie with the, the characters inside out. Yeah, 

[00:25:03] Cheryl Crow: I was just thinking about that this morning and how that applies to your magazine. Yeah. You got the different emotions and they’re like, I got this. Yeah. Like anxiety’s don’t worry about it guys.

[00:25:13] I’m here. Yeah. It’ll protect you. Exactly. Yeah. Well, it brings to mind self-compassion too. I think self-compassion practices for me have been really important. ’cause I do think that a lot of us are hard on ourselves, and I think that comes into play when we talk about lifestyle modalities and lifestyle methods to improve your quality of life and maybe decrease your inflammation.

[00:25:36] When you have inflammatory arthritis, I think there’s this idea that you have to be perfect. That’s why I was saying for 80 20, like 80% of the time, when I say 80 20, 80% of the time eat like fairly healthy and then 20% of the time don’t, because I’m like, gotta live. That’s just what, and I also know that if I shoot for a hundred, I’m just gonna feel and I don’t get it. I’m gonna feel like I failed. So being compassionate to yourself, treating yourself with like you would a friend is 

[00:25:58] Cayla Alexander, NP: Exactly, yeah. And [00:26:00] I think that also goes along the last lifestyle modality I think that is so, so helpful.

[00:26:05] That is pertinent to that and also the Blue Zones theory that you had brought up is that having fun is so important. And it is such an underutilized, like if you look at all, all the people who are making a great effort to include lifestyle modalities in the treatment of inflammatory arthritis, which is sadly not that many resources that do that.

[00:26:28] Yeah. But very few of them mentioned like the context in which you are experiencing this disease and having fun, having things that are meaningful and distracting and I like to use the analogy of our lives as salt water. And the disease is a teaspoon of salt and the rest of our lives is the water, and we can’t control the amount of salt that’s the disease.

[00:26:53] It’s this fixed thing that’s not going away, but we can control the volume of water. So all the other things going on in our life. [00:27:00] So if you put that teaspoon of salt into a shot glass of water, that feels very salty. If you put that same teaspoon of salt into a bucket of water, a five gallon bucket of water, it doesn’t feel that salty.

[00:27:12] So I think expanding all as much as you can within the confines of your disease, whatever the disease activity is at the moment, is so important for physical health and mental health. 

[00:27:24] Cheryl Crow: I mean, you’re speaking my language. A hundred percent. And that in occupational therapy there was, they’ve had different like taglines for our profession, but one of them was like helping people live life to the fullest.

[00:27:38] This is my memory of it. Live life to the fullest despite injury, disability or something. So, living life to the fullest of, what does that mean within the context of, saying you can pursue joy, pursue meaning with whatever, challenge you have in your life, whether that’s bipolar disease or whether that’s rheumatoid arthritis or whether that’s [00:28:00] diabetes.

[00:28:00] And I think that’s one of the, and I feel like the strangest patient educator sometimes because I’m like I sometimes point out the toxic or the unhelpful elements of wellness culture because it, but I don’t, I sometimes I wanna be very careful to say, I’m not gonna throw the baby out the bath water.

[00:28:18] ’cause very evidence-based things like exercise, dietary interventions, mental health, stress management, sleep, those are lifestyle methods do work for, evidence shows for, they work for improving quality of life and decreasing inflammation for inflammatory arthritis. But people can become so myopically focused on them that then they’re miserable because they’re, yeah, their whole life is about their, your, their ocean is like this tiny little thing where it’s I have to control everything.

[00:28:45] I have to do everything perfect and then they have no quality of life outside of their disease management. That’s the only thing that’s bringing them meaning So. Sorry. That’s my, 

[00:28:54] Cayla Alexander, NP: no it’s exactly, I feel the same way. And it can be the wellness industry because it is an [00:29:00] industry, it can be so predatory for people who are vulnerable, who are just trying to do the right thing.

[00:29:05] And it really, it, the line between a lot of it goes back to what is natural versus unnatural and big pharma and drugs are bad and these supplements are good, but when you take a step back and you think okay, so all of these supplements, all of these powders that are synthetic and made in a factory are good versus this biologic so named because it is a biologic treatment. It’s a natural treatment. It comes from natural cells. This is bad. It just, it, you can get so into the weeds with dogma, with wellness, and it’s so sad because a lot of people will just give up and rightfully so. I don’t, I think it’s hard, it’s so hard to navigate, but getting back to the basics of listening to my body, how do I feel at the end of the day if I exercise that day and I ate food, that made me feel well and I did something social that [00:30:00] took me out of my head for a couple of hours versus how do I feel when I ate pretty processed food and didn’t, I was sedentary and just kind of isolated.

[00:30:10] Cheryl Crow: Yeah. Yeah. And I love that the I mean, I agree with all that and I think. I like that the American College of Lifestyle Medicine, like one of the pillars is like positive social connection. And I think that is so missing. You said it beautifully that a lot of times people are just like, you just need to eat this.

[00:30:28] And it is very like, you’re like on a robot on a production line versus a human being trying to have a full, meaningful existence. And so I think that a lot of times people do think of Maslow’s hierarchy in this very dogmatic way of I have to get all my basic needs met and get my like, health completely figured out before I can ascend to like the top of, like meaning and joy.

[00:30:51] And I try to say no, like I can, I have the freedom, if I’m still conscious on some level, I [00:31:00] can try to find a way to connect to what’s important to me, what I value, what’s meaningful? I mean, I think it’s definitely hard. I have this really specific phobia of locked in syndrome that my brain is fixated on as I’m saying this, because something like that would be really hard.

[00:31:14] But I like I, I always think of the, for me, the book Man’s Search for Meaning and Viktor Frankl says between stimulus and response is a space, and in that space is our freedom, how we respond. That’s like the last of the human freedoms to choose our response. But sometimes our condition makes it so it’s hard to feel like our is a choice.

[00:31:35] So I recognize that. Yeah. What are some of the things for you that make your kind of ocean feel bigger, that bring you fun and joy and connectedness? 

[00:31:45] Cayla Alexander, NP: I think just being open to opportunity, like new ways to learn from me has been like, I love just kind of getting lost in something new. I had a patient who recently gave me a violin as a gift that was [00:32:00] painted and so I just signed up for violin classes for a few months.

[00:32:04] Just something totally different that makes you feel like a beginner again, as an adult. I love that. Or I love to read fiction and so I started writing fiction books a few years ago just to be totally out of rheumatology. You might feel like this too, working in rheumatology, basically okay, your life is affected by this disease and then you work and it’s all about this disease, so how can I kind of diversify my interests and get out of my own body?

[00:32:31] So that’s one way. And then social connection really just finding meaning in community as well. Like how am I contributing to the world? And that can look different every year. But for me, yeah, it is just kind of being open to things as they come along for a lot of people. Travel is a big thing.

[00:32:49] I am more of a homebody in that regard. I’m an aspirational world traveler and not quite there yet. 

[00:32:58] Cheryl Crow: Well, reading can be a way to [00:33:00] explore new worlds. I love readings. That’s like my, I joke, that’s like my only sedentary interest. Yeah. Well actually, no, I love pop culture. I love, like all my podcasts I listen to, similar to what you’re saying.

[00:33:10] I have a balance in my life of I, when I’m working on arthritis, and then when I’m playing, it’s not about arthritis. It’s like I listen to podcasts, like pop culture, happy Hour, all about what are the new movies? What are the new shows? What are the new, what’s the new music coming out and what books have come out?

[00:33:25] And I’ve got, I’m in a romance book club. It’s actually in Seattle called Radical Romance Book Club, which is about romantic novels and romantic stories that are featuring traditionally underrepresented populations. So there one was a girl with rheumatoid arthritis and as the protagonist of the love story, you’re like, oh, this is Other one’s L-G-B-T-Q, representation, body size representation, diversity, and it’s just a really cool, so, very similar.

[00:33:49] I mean, you Yeah. You anticipated my next question, which was going to be, what are the ways that you balance, working not just in healthcare, but in rheumatology and being a patient, I mean. I initially, so I worked in [00:34:00] peds, outpatient peds with like autism down syndrome, like developmental conditions.

[00:34:04] And that was, I made a conscious choice in the first five years of my OT career to not work in rheumatology because I was worried. First of all, there aren’t really that many jobs of OT and, which was a really sad thing. We need to change that at the system level, but I don’t have time. But anyway the, although, okay, I’ll just talk to you after this because the Dr.

[00:34:23] Jones, I’m like obsessed with his model. He figured out a way to do group clinic visits. Co-treating with a physical therapist for two and a half hours, and he does them weekly for eight weeks, and he is able to get this all reimbursed. They’re two and a half hours and it’s all reimbursed through traditional insurance.

[00:34:40] Cayla Alexander, NP: Oh my gosh. 

[00:34:40] Cheryl Crow: Anybody else doing this? So I’m like, that’s incredible. I know. I’m like, okay, well I could do that. Like maybe I’ll talk to you and Dr. Me and we’ll figure out whether way to do that. ’cause that’d be so cool. Like doing like real like deep patient education, like preventative wellness, not just, not traditional, it’s more self-management.

[00:34:57] But but yeah, in your case, yeah. Are there any [00:35:00] specific things you do like to manage? It, hearing, like in my case, Yeah, hearing a lot of personal stories every day. And you, it’s the flip side of it, the coin, the one side of the coin is that you get to turn your pain into purpose and helping people with the thing that you’ve already gone through.

[00:35:16] But the other side of it is that sometimes it can be hard to. Not burn out or feel to not feel like you almost ident for me. I almost identify too much and I wanna fix everything for everyone, but I know I can’t and then I feel anxious about that. 

[00:35:30] Cayla Alexander, NP: Yeah. Yeah. No, that’s a really good question. I think going into it, I thought about that am I too close to this where I will overextend myself or apply my own feelings to somebody else, assuming we have the same disease, so this must be what they want, even though it’s completely not.

[00:35:48] So I try to be pretty cognizant of that, but to be totally honest, like going into it, I love the phrase use turning pain into purpose. I thought that’s what I would be doing. Like using my experience. [00:36:00] I’ve kind of taken a few years to process this, figured out how to live really well with it, and now I can go and help other people.

[00:36:07] That was kind of my altruistic thought in the beginning. In reality, it’s been completely the reverse. I learn so much about life from my patients, living with all kinds of arthritis, how to live well with vitality, how to be brave and resilient in the face of this, how to age well. That’s not something I could teach people.

[00:36:33] I am 35, but I have 70-year-old patients who I look up to every single day who are like climbing Mount Fuji and having rheumatoid arthritis. Like how did you teach me? How did you do that when you were diagnosed at 25? So there is a balance, but I think, that I get so much out of it and just working in healthcare in general, burnout is so, so high.

[00:36:57] So there would be a different way to [00:37:00] burnout in any other field I went into. 

[00:37:03] Cheryl Crow: Actually, that is such a good point. You’re like, which kind of burnout do I want? Do I want the burnout from the thing that I have, but, or like from the system that is about rheumatology? Or do I want, like in my case, yeah, there’s a lot of burnout in pediatrics.

[00:37:15] Like I did school-based and outpatient. And it’s hard. It, yeah it’s all hard if you’re a helper in a helping profession. But I think that’s a really beautiful point that you and I feel the same with my support groups and everything I’ve learned so, so much and that and that whole phrase that we all say, but it is, there’s no one size fits all.

[00:37:38] But it, it really becomes clear when you start working with large numbers of people with this, no two people’s way of managing or coping with their condition is exactly the same. So I might have the idea that, yeah, I figured it out for myself, but that does not mean that what worked for me is gonna work for someone else.

[00:37:55] So. Exactly. Yeah. Another thing that we wanted to talk about or that you brought up, [00:38:00] I think is such a beautiful important point, is tips for patients to better communicate with their rheumatology providers and get the most out of a visit. I have to say, yeah. I did not understand anything about the system when I was first became a patient, I had only ever gone to the doctor for an ear infection.

[00:38:17] So I thought that I had to tell my whole life story to everyone that came into the room from the medical, from the front desk person to the medical assistant to the, and so anyway, that’s, there’s a nuts and bolts learning curve, but yeah. What are some what were some of the things you wanted to share?

[00:38:31] Cayla Alexander, NP: Yeah, I think that is a huge part of it that’s so common. And learning how to navigate this system. Like when in, in healthcare education, we learn such a specific way to communicate with each other and with patients, and it’s so paternal and unidirectional. It’s here’s point A, how to get to point B, here’s the problem, what’s your solution?

[00:38:53] And the patient like in the real world, people don’t communicate with each other like that. It’s like this [00:39:00] very, your sentences, you take these cul-de-sacs of stories and so, I think just taking a deep breath before the visit, taking a moment that morning, collect your thoughts, prioritize the things that you really want to get out of it, and maybe write a few things down, even if it’s trivial or weird or seems insignificant.

[00:39:22] Then taking that and communicating it very early on in the visit in an explicit way. Like a direct, here’s what I need from you today. Say your hellos. And then starting with that that tends to be the most gratifying, I think, for everybody. Because like when the provider, if you start talking about your joint pain, the provider is immediately thinking okay, we’ve identified the problem.

[00:39:48] Let me think about the solutions. And honestly, sometimes we’ll stop listening to you because they’re running through the solutions in their head. What would be the next right drug for them? Or what can I add? [00:40:00] Or, I can’t remember, did they have liver disease and they can’t take this drug and I need to go into the chart and look at that.

[00:40:06] But really in the patient’s mind, maybe they want to talk about that joint pain. But they have this whole upheaval in their personal life, like their husband’s about to have a hip replacement or their dog is dying and the last thing they wanna do is have a change in medication. They don’t actually want a solution right now.

[00:40:24] So there’s this discrepancy, I think, between what the provider thinks is important to talk about and what the patient thinks is important. And the patient tends to be more passive just because of the power dynamic. But in reality, most healthcare providers really do want to help you and meet you where you’re at.

[00:40:41] And so if you’re able to just communicate that very early an example of this is what happened with my own diagnosis. The visit that I came away from that didn’t go so well, and this was long before I worked in rheumatology where the rheumatologist really talked at me about the [00:41:00] diagnosis, the biologic options.

[00:41:01] They all terrified me at the time. And in my head, the whole visit, I’m like, what is even going on? Like I have this serious disease, I just moved across the country, I don’t know anybody. I just started school and now you’re telling me I have to start this injectable medication that costs $8,000 a month and suppresses the immune system.

[00:41:22] I work with TB patients and I remember at the visit I started rambling on about having just moved here and like the process of moving and he kind of gracefully, but firmly redirected me to okay, let’s get back to what you need to know about this. Right? Right. And if I had just been able to communicate, like what I need from you right now is for you to understand how overwhelmed I’m a, how overwhelmed I am, and.

[00:41:49] My real question is, what happens if I don’t do anything about this for a few months and just get used to the idea, regroup in three months and go [00:42:00] over some options then am I hurting myself by doing that? That’s all I really wanted to take away from that visit. But I didn’t have the confidence to interrupt him or to say that because it felt very, it wasn’t clinical enough.

[00:42:13] It wasn’t a good enough thing to feel or to ask. So I’m just rambling on and he didn’t feel he didn’t understand. I was trying to say I’m overwhelmed and it’s hard for them. I mean, now, especially being on the other side of it, I know like you can’t possibly understand how people are receiving your information in the context of everything going on behind the scene that they didn’t tell you.

[00:42:34] Yeah. 

[00:42:35] Cheryl Crow: Yeah. 

[00:42:35] Cayla Alexander, NP: If that had been his approach, get used to this diagnosis and we’ll come back in three months, i would’ve been thrilled, but he would’ve gone next door to the next room, a different patient with the same diagnosis, who would’ve been like, are you kidding? I can’t, what do you mean wait three months?

[00:42:50] I’ve been waiting 10 years for this diagnosis, so you just can’t, and I know this rheumatologist personally now, and he’s very well-meaning and kind. And I, if [00:43:00] I had just done that, I think we both would’ve come away from it feeling like it was a better visit. 

[00:43:06] Cheryl Crow: I mean that first one, how it’s you’re so right, that the, one of the best pieces of advice for patients to get the most outta their visit is to prepare beforehand and figure out the best way to communicate what you want outta that visit to your doctor.

[00:43:21] Some doctors are receptive and some providers are receptive to getting a MyChart message before, say, Hey, this is my, these are my top two priorities for today. Not sure what you wanna talk about, but I would love to get, let me know if we think we can get through these two. Sometimes my rheumatologist is, and she’ll be like, sometimes she’ll be like, oh, that’s a quick one.

[00:43:38] Should I get a pneumonia vaccine? I somehow haven’t gotten one of those. Or, and she’s yeah, just go get it here, or whatever. But how do you even collect your thoughts if you don’t know until that appointment that you’re about to be diagnosed with something Like, you know what I mean?

[00:43:49] Yeah. So give yourself grace about that because it’s how would you know? And I think, but I think you, you touched on something that I do think the whole realm of patient advocacy is so important, and we also, as patients [00:44:00] have to understand that our healthcare providers on our health team are literal human beings, and that we as patients represent a very broad, diverse amount of opinions and preferences and just like I was that opposite patient, like you said. I was like extremely relieved. And I was like, just gimme the medicine. Like you’re just, you’re literally telling me that there’s something that could help me. Like I want it, give it to me now. Like it’s a very, it was a very straightforward yes, it was like side effects.

[00:44:27] And as you start talking about the side effects, I was like that Charlie Brown teacher being like, I was just like, I don’t care. You said that there’s something that can help me, give it to me. So everyone’s total, how do you know? You’re just doing the best you can as the provider. And so giving your providers that grace.

[00:44:42] Well, also knowing there are some cases of like malpractice and obviously things where we need to like change, hold people accountable. But I think a lot of times yeah, those conversation are just delicate. As Taylor Swift says, is delicate, and but I think your advice is really good.

[00:44:57] And I think one of the [00:45:00] people I interviewed for the podcast said, I thought this was so smart, so, so succinct. She said, I prepare for my appointments like it’s a business meeting. It’s a meeting, right? And a good business meeting. You have to know what is the point of this meeting. Like 

[00:45:15] Cayla Alexander, NP: Exactly. No, that’s such a great way, and that’s kind of what I’m getting at with the way that healthcare providers are educated.

[00:45:21] If you come in the morning and you look at your schedule and you have 20 patients, that’s 20 business meetings where that person has expectations for you. They expect you to be prepared, they expect you to remember almost everything about their history and have a plan for today. So the way that we’re educated is like, how do you do that?

[00:45:40] How do you come to each visit prepared and have a plan? And so when you’re working with the general population who maybe doesn’t have the experience even with a business meeting it’s just this huge disconnect. But if you have that background where you and a lot of patients do, where they think of it that way [00:46:00] here’s what I need from you.

[00:46:01] What do you need from me? I mean, it tends to just go a lot more smoothly. 

[00:46:06] Cheryl Crow: That definitely becomes easier, I’d say, for anyone listening who’s brand new diagnosed and still in that like deer in the headlights, like what is happening? These two nice ladies are have survived, so I hope I will too.

[00:46:16] Like you’re in that initial stage. It gets easier over time ’cause it hopefully if you are able to, if you find a good fit with a rheumatology provider and you’re able to stay with them long term, it really is like you’re actually like working on the same, in the same business together.

[00:46:31] The business of keeping you healthy and as healthy as can be. And I think the other thing this is off the spur of the moment, so if you don’t have an answer, that’s okay. But I think something that’s come up in the support group sometimes is, that’s become revealed to me is a lot of patients don’t know what the target of their treatment should be.

[00:46:50] And they’ll say, and when I say target, I mean like they don’t know how good they’re supposed to aim for feeling. Should I be aiming [00:47:00] to feel no pain, no fatigue, like I did before my diagnosis? Or are we aiming for what we, in the field we call like low disease activity or mild disease activity? How do you go about those conversations?

[00:47:14] Is that a standard part of your visits and what advice do you have for somebody who hasn’t had that conversation, who’s listening, who’s I don’t know am I supposed to feel amazing? Am I supposed to just kind of feel like less horrible? 

[00:47:27] Cayla Alexander, NP: Yeah, no, that, that comes up all the time and getting into the nitty gritty of it, like different disease states will have like their treat to target like more for research, but clinically we do use them in terms of what constitutes low disease activity.

[00:47:43] But more broadly speaking, what I like to do, what I think is really effective is at the very first visit, I try and get a lot of the gritty details of how is this affecting you? What is it like to wake up, what do you have difficulty doing? [00:48:00] What do you want to do that you can’t do? And more objective metrics like morning stiffness and swollen joints and things like that.

[00:48:07] But really getting into like on a day-to-day basis, what are the things that you’re avoiding doing? Can you, like for me I didn’t know this at the time, but like I couldn’t turn and look in my blind spot in the car. I had to turn my shoulders so stiff. What is the experience like for you driving in the morning, going to work compared to driving home?

[00:48:28] Like all these really like subjective details that would never be used in a clinical trial ’cause they’re not standardized. I like to get all that and I save that note and then four months, six months later, after starting therapy a lot of times patients are trying to be such a good patient and they’ll get these patient journals and they will create a PowerPoint presentation with graphs of their daily symptoms.

[00:48:53] Cheryl Crow: Sounds familiar? Yes. 

[00:48:54] Cayla Alexander, NP: And that’s all like your, I totally understand. Everybody’s just trying to do their best and they’re putting so [00:49:00] much effort into it. But I think when you ask the brain to look for things that are wrong, instead of things that are right, then it’s kind of like the saltwater analogy.

[00:49:10] Like your brain, then you wake up every day. If you’re gonna be tracking your pain, you’re looking for your pain. So I like to say, six months after therapy, I read them back that note from the very first time that I met them, and we hope that it’s about 70% improved from that. And ideally, like of course it’s probably not realistic to say every day is pain free. I have boundless energy all the time. Some people have that experience, but for the majority of us, that’s not the case even if a biologic is effective. But we want clinically like about a 70% improvement and then you’re not hindered by your pain.

[00:49:51] Like you might still have pain, but it’s not like you’re not doing things because of your pain. And like when you look at the clinical trials with biologics, like [00:50:00] the ACR 20 oftentimes constitutes an effective drug, and that’s only a 20% improvement from baseline. Clinically, we want it to be a lot higher just for people’s quality of life and it usually is.

[00:50:13] But yeah, expecting no pain back to what you were like when you were 15, it’s probably not gonna happen for most people. 

[00:50:24] Cheryl Crow: But that’s, first of all, that’s a beautiful treatment process like where you get that picture? I always tell patients to tell their doctor a day in the life or tell their providers what is a day in my life and what, and in OT that’s like our central question, right?

[00:50:39] What is, what are the things that are going well and what’s not going well? What have you already tried to work around this or rehabilitated on your own? ’cause people are natural. We’re humans, we’re natural problem solvers in what has worked and what hasn’t. But I love the idea that you then read it back to them at six months.

[00:50:55] And I think that’s a beautiful process, and it very much honors them [00:51:00] as again, a functioning human being, and I know we have standardized tests as OTs of like activities of daily living and instrumental activities of daily living, which are like the more complicated ones.

[00:51:10] So like an ADL is like taking a shower, going to the bathroom. And then IADL instrumental ADL would be like managing pets, managing finances, managing your household shopping for food versus cooking and eating the food kind of thing. And so we also can, if you do have an occupational therapist on your team, again, it’s really unfortunately for some weird reason we’re kind of not utilized a lot in rheumatology.

[00:51:35] I think everyone keeps telling me it’s ’cause of like insurance so that they don’t necessarily always pay for the stuff. ’cause you can’t see like these gigantic improvements in four sessions or something. But anyway, this point being an OT or even a PT can kind of drill down to some of those specifics too.

[00:51:51] But I think that’s yeah, I think that just for anyone listening know that you can ask that it’s okay to ask the question of like, how much better should I be feeling, what’s the range? I like [00:52:00] giving ’em a range around, you’re saying around 70%. I definitely was one of those patients that had a hundred percent when my first treatments worked and I was just really lucky.

[00:52:07] I went into complete remission on methotrexate plus a biologic for six years. And then I had the rude awakening of something changed like. I have to joke a butterfly flapped its wings in Asia and suddenly the medicine that did work, didn’t work anymore. And that was when I actually grieved the diagnosis.

[00:52:23] I didn’t grieve it at first ’cause I was like, I don’t care what you call it or what it is, the fact that you’re telling me there’s a treatment and that you don’t think I’m crazy and I’m making this up ’cause I had been medically gaslit. Anyway, that’s a whole other story. I was like, cool, I’m good. Just gimme the medicine.

[00:52:36] And then it worked and I was like, problem solved. Wow. I’m gonna live for 80 more years on this medicine and die at 94, like three of my four grandparents live till then. So amazing. 

[00:52:44] Cayla Alexander, NP: Wow. That’s so interesting. Yeah. Yeah. That’s great. I mean, it’s so satisfying when you see people who get that robust.

[00:52:51] And from my experience too, in the very beginning being on biologics, it was like that, like moving my head to look in my blind spot. I felt like an owl. I was [00:53:00] like, what is going on with my head? Can people do, I can guys look at me, look at this. What I’m like bounding out of bed in the morning. I mean, it was just incredible.

[00:53:11] But there are some things, like on the clinical side of it, we really just don’t like to see persistently swollen joints, persistently elevated cRP, like even if the person is feeling pretty good, like there are some things where it’s I’m just not, I don’t feel like I’m doing you, I’m not providing good care.

[00:53:31] If you come in every time and your joints are swelled, like there’s, there are some things where it’s not, it’s obvious things are not well controlled, but generally speaking, especially with spondyloarthritis, because there’s sometimes, especially in the male presentation, there’s just not, there’s not objective metrics like the swelling or the elevated CRP and it’s so glacial.

[00:53:49] It’s hard to, I mean, even repeating imaging every year, oftentimes you don’t see change. And back pain, of course, you can get mechanical back pain and on [00:54:00] top of inflammatory. So 70% I think is probably pretty applicable to spondyloarthritis, but flexible with the other disease states. 

[00:54:08] Cheryl Crow: Yeah that’s really helpful.

[00:54:09] Well, I love the way that you think. By the way, in case you’re wondering, are your books, you mentioned that you have written some fiction. Are those like publicly available, by the way? 

[00:54:18] Cayla Alexander, NP: No, they’re not. I’m on my third one right now.

[00:54:22] And the second one is, we call it like, there’s all these words in publishing, but there’s, we have to get a literary agent to represent the book. So that book is with literary agents, but I’m working on the third one and I think this one is much better. So that’s the one I’m putting my energy into.

[00:54:40] Cheryl Crow: That’s so fun. Sorry, I just was like, don’t forget to ask her that ’cause I think people listening to, you’re gonna be like, I wanna read her a book. Even if it’s not about arthritis. You’re just like a very eloquent person. But yeah, time-wise, I will start going to our conclusion questions. I used to call them rapid fire questions, but they’re not really that fast most of the time because the first one, this is [00:55:00] one of my favorite questions to ask, which is, what are your best words of wisdom or a message you would wanna share to somebody listening who is newly diagnosed with inflammatory arthritis?

[00:55:10] Cayla Alexander, NP: I think the one really objective thing is besides the kind of classic one day at a time, and this isn’t gonna be forever, that kind of thing, but the one really actionable thing is stay out of the patient forums or at least limit your time. And I always send people to you, to your website because I feel like it’s such the perfect mix of, it’s not this like toxically positive place where you have to be grateful for everything all the time, but it’s also not the like downward spiral of things are gonna be like this forever and I can’t do anything because of this disease.

[00:55:47] Which I think is a lot of the forums that you’ll see on the internet. And it’s not to invalidate those experiences because they’re very real and on bad days it can definitely feel that way. But especially in the beginning [00:56:00] when you’re just getting your footing in this, if you’re spending a lot of time there, like that’s what I did.

[00:56:05] And. Just trying to read about this and hear about other people’s experiences. That’s what was available to me, and it really just put like a storm cloud over my life. This is, I’m, this is awful. Like everybody’s doing bad with this disease. And then now working in rheumatology, I can see the majority of people really can live a meaningful, vibrant life.

[00:56:27] And they’re, they don’t have time to be on the internet because they’re doing other things. 

[00:56:32] Cheryl Crow: I think that silent majority of patients doing well who don’t talk about it on social media is crucial and it’s so hard to get your logical mind in that, around that. ’cause you’re like, I want, I am, I’m trying to generalize, like I’m trying to do a logical thing, which is I access stories of patients and I’m going to make generalizations from those, but there’s this silent group of people that are doing great and not posting about it because it’s not really part of their identity at the moment.

[00:56:58] That’s how I was the first six years [00:57:00] after diagnosis. I was like, yeah, I have this thing, but I just take this medicine and I’m doing well. It was literally like end of story, like yes, it affected my life and that I had to have access to health insurance. And it did. I don’t wanna downplay it, but it really wasn’t like I actually found an old blog, or I had it old.

[00:57:14] I totally forgot about this. And I didn’t even mention arthritis like once in that blog because it just wasn’t a huge thing at that time. The diagnosis was a huge deal before I knew what was wrong with me. But anyway, point being, I think that’s important and I think to really if nothing else to understand that the people who are most active on those forums were diagnosed before the current era of treatment, some medications, and they just represent a much more severely affected, and again, they, everyone deserves support. But if you go in there in 2025, thinking my prognosis is gonna be the same as somebody diagnosed in 1985 who had 20 years of progressive joint damage and deformity because they didn’t have biologics yet.

[00:57:55] It’s completely different story. I mean, I don’t have to tell you that, but people listening [00:58:00] know that your prognosis, if you’re gonna make sure you’re comparing apples to apples, compare yourself to other people who diagnosed in the last five years, not people diagnosed. 

[00:58:08] Cayla Alexander, NP: And then, honestly, like I have people who are that group who were on gold shots when there were no biologics who have really significant deformities where they can’t even use their hands. And they’re some of the most joyful patients that I have. And so it’s really, it’s hard to know. I think a lot of it has to do with resiliency and that’s a bigger conversation.

[00:58:30] But yeah, I would say that the forums do the people who are in there all the time is, it’s maybe not the healthiest thing to insert yourself into in the beginning. 

[00:58:41] Cheryl Crow: I really, I do wanna linger on that point because I do I try really hard not to say things like, you could end up in a wheelchair or something as if being in a wheelchair user is like the worst fate anyone’s ever had.

[00:58:51] That is not the case. Right? So I think that’s really true that you’re. That, they’re my rheumatologist, I don’t dunno if you know her, Dr. Jennifer Gorman, she’s really sweet. And [00:59:00] she said, I just have this group of patients. I just call them robust rheumatoid, like the people who are just, she didn’t use the word resilient, but she’s robust.

[00:59:08] She’s they’re just like, they’re just chugging along and still traveling, still doing stuff. Okay, if my hands don’t, my fingers aren’t in the regular position, the normal range of motion, but I’m gonna adapt. And I think that’s 

[00:59:19] Cayla Alexander, NP: yeah, that’s exactly, that’s who I have in mind when I say that.

[00:59:22] Just these like beautiful, joyful people that despite everything, it’s, that’s who I learned from learn so much. 

[00:59:28] Cheryl Crow: Yeah. Well I’m sure that you are that example doc to them too. Do you have a favorite for you or for your patients? A favorite quote or inspirational saying for tough days? 

[00:59:38] Cayla Alexander, NP: What I use for myself?

[00:59:40] Is so very silly and simple, but from Finding Nemo, that just keeps swimming with Dory. That’s, I use that as one, that’s one of mine. Just keep swimming is, and it’s not even, it doesn’t I, I think it’s just so helpful in general, like with these like exercise, having to exercise or getting to exercise every day.

[00:59:57] A lot of times the willpower, the motivation [01:00:00] is completely not there. So it’s not about relying on that, it’s just keep swimming, put one foot in front of the other. It doesn’t matter. You don’t have to think about the hour long workout you’re about to don’t think about it. Don’t think about the meal prep that you’re about to do.

[01:00:13] Just put one, take one pan out, one foot in front of the other and just keep swimming. 

[01:00:18] Cheryl Crow: I love that. What kinds of, just very briefly, ’cause I forgot to ask this earlier. What kinds of exercises do you do? 

[01:00:24] Cayla Alexander, NP: I have to change it all the time. It’s like the activities, I kind of always wanna be doing something new.

[01:00:29] So, I’ll go to physical therapy actually, probably, I mean, ideally once a year, it doesn’t always work out that way, but I’m doing it right now, just as always kind of a, like, where am I getting weak? Where can I strengthen things more? Just as kind of like a guidepost. And then the rest of the year strength training is super helpful for me.

[01:00:48] So, even like with Spondyloarthritis, having a risk of spinal fusion and deformity is just keeping the whole upper body really strong and straight. And then ideally one major muscle group once a week. [01:01:00] So lower body, one day core, one day upper body the third day, and then cardio all in between.

[01:01:06] So right now I like a Peloton. I got one on Facebook marketplace for super cheap just to see if I would like it. You had to look there ’cause they, a lot of people got ’em over the pandemic and then it was like a few hundred dollars compared to $3,000. I know. And I didn’t wanna spend that when I didn’t know if it would stick, but it is sticking, so I’m doing that most days.

[01:01:27] And then yoga is really helpful. I love trying new classes all the time, like bar and Pilates, just kind of keeping my interest. 

[01:01:36] Cheryl Crow: That’s beautiful. It goes with your personality, it goes with their love of learning new things. And and yeah, I’ve, those who’ve been listening know that over the last two years I’ve really delved into strength training and been like so pleasantly surprised how I really actually feel a burst of energy after strength training more than I do after cardio, which blew my mind.

[01:01:58] ’cause I always thought that was like, that [01:02:00] runner’s high. I would get it after cardio, but after strength training, I mean, I know that they’re not completely exclusive, mutually exclusive, right? Your heart is bumping faster when you’re strength training. But yeah, it’s been phenomenal and I just feel like I could feel in my daily activities.

[01:02:14] When I like, everything’s easier. Groceries. Yeah, yeah, why not? Yeah, so it’s good. And now I’m 44, so it’s also okay, like for my bones, I gotta get my bones like ready. And luckily, ’cause I was a runner and a soccer player for so long, I did get a bone density scan and it, they’re like, your bones look really good.

[01:02:30] And I’m like, that’s awesome because I pounded on them for many years. So that’s helpful. Do you have, totally okay if you don’t, but do you have a favorite arthritis related gadget or tool in your toolbox? I dunno if you have a heating pad that you use or something like that? 

[01:02:42] Cayla Alexander, NP: That was my answer.

[01:02:43] Cheryl Crow: Oh, sorry. Sorry. 

[01:02:44] Cayla Alexander, NP: Although what I do sometimes with patients who are having trouble a lot of wrist involvement with RA cutting, I always pull up that page on your website with the tools. And so every time, and the knife and d, all kinds of things. So every time I’m there I’m like, I should go [01:03:00] look at this for myself for things.

[01:03:01] Yeah, it’s historically, it’s always been the heating pad I have too, and it’s kind of just nice. Even if I’m not having spondyloarthritis related pain, just at the end of the day it’s very relaxing from a sensory perspective. 

[01:03:13] Cheryl Crow: I’m so, yeah, I love heat, except if I’m in like a real flare up, like a hot, like my joints feel already hot.

[01:03:19] I don’t want more heat. But if it’s more the stiffness, then Exactly. Yeah. Yeah. I love it. Well, I know you’ve mentioned that you love reading, but the next question, this is selfish for me ’cause I love getting recommendations, but do you have a favorite like book or movie or show you’ve watched or read recently?

[01:03:35] Cayla Alexander, NP: Yes. So two that are related to arthritis that I think have been just really helpful that I go back to. One is called How to Be Sick by Tony Bernhard, which putting title, but very good information. It’s super short. The other one is Healing the Modern Brain by Drew Ramsey. And it’s really about it.

[01:03:55] It’s nothing to do directly with arthritis, but it has just these tenets of mental [01:04:00] health and how to build resilience, which is very applicable to arthritis. I love that he’s a psychiatrist. And then in terms of fiction, totally unrelated. The best book I read recently was called God of the Woods by Liz Moore.

[01:04:13] Cheryl Crow: Oh, okay. I haven’t read that one. 

[01:04:15] Cayla Alexander, NP: It’s, I like all kinds of fiction, but the, it’s just very, it’s like a mystery. It’s cozy coming of age socioeconomic tensions. It was just very well written. 

[01:04:26] Cheryl Crow: Awesome. Okay. I’m writing all these down, even though this is being recorded. I love that. Have you read The Happiness Trap by any chance by Russ Harris?

[01:04:35] Cayla Alexander, NP: No. 

[01:04:35] Cheryl Crow: I love, that’s the one I’m always recommending on here. It’s also I feel like the happiness trap, the way it looks on the cover, it looks like it’s just like a, it has a big smiley face on it, but that the trap is that in trying to be happy, we are not happy.

[01:04:47] So we have to accept it’s all about acceptance and commitment therapy. And so anyway that’s my favorite nonfiction recommendation for anyone listening. And then this last one, what does it mean to you? [01:05:00] I mean, you’ve already answered this in everything you said, but what does it mean to you to live a good life and thrive with Spondyloarthritis axial spondyloarthritis?

[01:05:08] Cayla Alexander, NP: Yes. That’s a great question to end on. I feel like when my life feels full and meaningful despite arthritis, sometimes even when I’m lucky, it feels that way because of arthritis. Like I have this now very fulfilling career. I’ve developed these habits with exercise and diet and sleep quality that will hopefully help me sidestep a lot of the other chronic illnesses people start to develop with age.

[01:05:35] Like I said, I have so many patients in their seventies who have had inflammatory arthritis and they’re very healthy, older adults because they’ve committed to these habits for such a long time back in their twenties because of autoimmune disease. So ultimately just getting to that place where you feel like your life is the bucket rather than the shot glass. The disease really isn’t taking up that much space. And it doesn’t have to be building your career around it [01:06:00] like we have done. There’s plenty of patients who thrive who have other jobs, completely unrelated, but I think the commonality is they’ve found ways to make the disease their teacher, like they’ve asked themselves, how do I find acceptance about the things I can’t change, but still live really well?

[01:06:19] And how do I maintain gratitude and hope and build resiliency around this to where it’s actually made me a better person, a more empathetic person. To where you don’t know what anybody else is going through when you look at them like they can look perfectly healthy and be completely suffering.

[01:06:38] It’s not immediately obvious. And so you develop this empathy toward everybody just because you don’t know what they might be going through. And you’d also sometimes develop this appreciation for the health that you do have and the abilities that you do have, because you realize how unpredictable the human body can be.

[01:06:58] Cheryl Crow: Wow that’s beautiful. I [01:07:00] resonate with all of that a hundred percent. Thank you so, so much. Is there anything else you wanna share before we wrap up? 

[01:07:07] Cayla Alexander, NP: I don’t think so. I think we covered so much. 

[01:07:10] Cheryl Crow: I mean, we really did. And I know that you’re, you don’t have a lot of public social media.

[01:07:15] I usually say if people wanna follow people, this is their account. But you do have a LinkedIn. I could, 

[01:07:20] Cayla Alexander, NP: I don’t know if you I do. And if anybody is like book interested, I do have that. I’m Seattle Book Girl on, oh, blue Sky. 

[01:07:28] Cheryl Crow: How am I not following that? 

[01:07:29] Cayla Alexander, NP: Okay. Okay. Seattle book. I do, I, the Instagram is there, I just haven’t had the time yet to quite invest in it.

[01:07:34] It’s also Seattle Book Girl, but it’s just, book reviews and connecting with other readers. And then, yeah, LinkedIn is more the rheumatology side. Yeah. Well,

[01:07:43] Cheryl Crow: I don’t wanna not say where you work because people living in Seattle may definitely want to see you.

[01:07:48] So I’ll put a link to the clinic there. Great. Yeah. But thank you so much. It’s really great to catch up. It’s wild that I met you like over a half decade ago. And so much [01:08:00] has happened in that time, including a pandemic. But it’s just, it’s, your philosophy is really important and I think people are gonna learn a lot about what resilience really looks like from you and your story.

[01:08:11] So, and also understand more what a nurse practitioner does. So thank you so much and we’ll talk to you later. 

[01:08:18] Cayla Alexander, NP: Thank you. Good to see you. 

[01:08:19] Cheryl Crow: Yeah, thanks.[01:08:22]

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