Finding a Realistic Sense of Hope While Juggling Multiple Chronic Illnesses: Katie’s Story

Summary:

Have you ever done “everything right” and still had pain, fatigue or other symptoms of your chronic illness?

You are not alone. In this episode, host Cheryl Crow and Rheum to THRIVE Graduate Katie Searfross discuss how to find a realistic sense of hope when coping with multiple fluctuating, complex chronic illnesses that are sometimes out of our control. 

Katie shares how she copes and finds ways to hold on to moments of joy even when her symptoms of Reflex Sympathetic Dystrophy (RSD or complex regional pain syndrome), Migraine and Rheumatoid Arthritis remain. Katie and Cheryl share how they’ve learned to be gentle with themselves and patient in those tough moments when you do “everything right” and your symptoms remain.  They also discuss the complexity of moments where you have to decide whether to push past your pain and when to slow down and listen to your body. 

Katie and Cheryl also discuss the value of group support and a sense of community, which Katie found in Rheum to THRIVE .  Katie also shares lessons she learned as a children’s pastor specializing in grief, which can apply to people with chronic illness as well.

Video:

Episode at a glance:

• Diagnosis story: Prior to her rheumatoid arthritis (RA) diagnosis, Katie knew she had other diagnoses including Reflex Sympathetic Dystrophy (RSD or complex regional pain syndrome) and Migraine. As a result, it was difficult for her to recognize “normal” symptoms for RSD compared to out of the ordinary symptoms which pointed to a new diagnosis of rheumatoid arthritis.
• Pain and dissociating: Katie shares how she found herself dissociating from pain / distracting herself from pain, and needing to learn to reconnect with her body.
• Katie’s coping toolbox: At first, adjusting to RA diagnosis felt like losing everything. It’s frustrating to have days when you do everything right and still have pain. Katie shares how in Rheum to THRIVE, being provided with evidence-based tools to manage pain and fatigue while having acknowledgement of the reality that sometimes your symptoms will remain despite doing everything right was empowering. It’s a reminder that we can still focus on ways to find joy and thrive. Katie found freedom in knowing her diagnosis is not her fault, and learned to be gentle with herself.
• Social support: Katie shares how important it was for her to find a sense of authenticity, understanding, valid information and connection and how she found that in Rheum to THRIVE . Having expert guidance and an ability to ask questions helps to make sense of diagnosis, experiences, and lifestyle considerations.
• Lessons learned from Katie’s work in grief: Katie shares lessons she has learned in her work as children’s pastor with adults and children who are grieving; many of these lessons can also help people with chronic illness, including learning to be gentle with yourself.
• Katie’s best advice for newly diagnosed: Find a safe community – don’t try to do this as an island, because it’s too much for one person to hold all on their own. All suffering is valid, it’s never helpful to say it could be worse. 
• What it means to Katie to thrive with rheumatic disease: Using the “and” – this is hard and I want to laugh and make memories. It is embracing that and not putting life on hold. I remind myself that I’m doing my best.
  

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:

Katie Searfoss is a friend, sister, and aunt who loves story-telling, laughing, coffee, and any excuse to pop confetti. She has been living with chronic illness for 18 years (Reflex Sympathetic Dystrophy, Migraine, and Rheumatoid Arthritis). Katie is passionate about helping to hold space for those who are hurting and desires to use her pain and experiences to better support others.

Cheryl Crow

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

Episode links:

• Links to things mentioned in episode or additional listening
  • What is  Reflex Sympathetic Dystrophy
  • What is a pain management doctor
  • What is a physiatrist
  • Dr. Kristin Neff – 
  • Kate Bowler – you are not the bad thing.
  • Dear Hank & John – podcast
  • Vestibular migraine connection to RA
  • Rheum to THRIVE programs: learn more
• Speaker links
  • Facebook: https://www.facebook.com/katie.searfoss.9
• Cheryl’s Arthritis Life Pages:
• Youtube channel
• Instagram @arthritis_life_cheryl 
• TikTok @arthritislife
• Arthritis Life Facebook Page
• Cheryl on Twitter: @realcc 
• Arthritis Life Podcast Facebook Group

Full Episode Transcript:

Cheryl:  00:00

Hi, I’m so excited to have Katie Searfoss today on the Arthritis Life Podcast. Welcome, Katie!

Katie:  00:07

Thank you. So happy to be here.

Cheryl:  00:09

Yay. And can you just give us a quick introduction, where you live, and what is your relationship to arthritis?

Katie:  00:15

Yes. So, I’m in the Philly area, Pennsylvania, East Coast. And I am a patient. So, I have had rheumatoid arthritis for two years now.

Cheryl:  00:29

Great, thank you. And I always give, you know, a little extra moment of, what would I call it, empathy to people who have gotten their diagnosis during the worldwide pandemic. 

Katie:  00:40

Yeah, yes.

Cheryl:  00:42

‘Cause that’s, that’s a lot. And I know that this is not your only condition. Would you mind sharing a little bit about your other chronic health conditions?

Katie:  00:53

Sure. So, I’ve been in chronic pain for almost 18 years now. So, my primary diagnosis that I’ve had the longest is called Reflex Sympathetic Dystrophy, which is abbreviated to RSD. Some people call it complex regional pain syndrome, too. I’m just, like, an RSD girl. That’s how I was diagnosed. So, that’s what I call it. So, I had that for 18 years. And then, seven years ago, got diagnosed with migraine and did not actually know it for a while because I thought it was RSD related. And then, was having vestibular migraines, actually, for a while and didn’t know what that was or what was going on with that. And a neurologist was like, nope, you’ve been living with migraine, and now vestibular migraine episodes, too. And then, two years ago, was introduced to RA. So, it was all obviously the pandemic that part, but again, sometimes I think when you have got multiple chronic pain issues, certain things don’t stand out as much as like, something’s wrong, because it’s like, well, my body always feels off, you know. So, that is my little, little collection of diagnosis.

Cheryl:  02:17

Yes, you’re a collector. But you’ve already touched on something, that it’s so complex. When you live with more than one condition and especially more than one pain condition, it’s always hard to know, like, is this my — is it my fibromyalgia? Or is it my rheumatoid arthritis? Is it my mixed connective tissue disease? Or is it my rheumatoid arthritis? In your case, RSD, reflex sympathetic dystrophy, is it that or is it rheumatoid arthritis? And I wonder if you ever gotten the position I’ve been in sometimes where I’ve been like, I go flip flop in between gaslighting myself, of like, “Oh, it’s not, it’s probably nothing. Probably nothing really bad.” And then, you go to the doctor, they’re like, “Actually, whoa, that actually is bad.” Do you know what I mean?

Katie:  02:59

Oh, yeah, that’s exactly what happened with the RA. And I think like, for me with the RSD, like, what I had been told and also what my experience had been, it’s a progressive disease. And so, because of that, you know, as over time, it’s gotten harder or worse. Like, I’ve always described it as it feels like it’s like levelling up on me and like, I don’t know that it’s coming. And so, sometimes I have bizarre flares that it’s like, is this just weird? Is like my body just playing like a bad Whack-a-Mole game, you know? Or is this a flare? Or is this levelling up? And very rarely is it ‘Oh, it’s levelling up’ to the next thing, but when it’s happened, it’s always been super scary and super, like, random symptoms in the mix. 

And so, I didn’t do a great job paying attention to even considering that something new was going on. In fact, I still, I think, that’s like not usually the first thing on my mind, is like something else is wrong. It’s like I normally default to assuming it’s the RSD. And so, with the RA, that really confused me. Because migraine was like, well, that I thought was connected because of how much pain I was in. But the RA was like, no, I feel weak. And that was not an issue with RSD. And like, I have nerve pain with my RSD, but this was joint pain. But it still didn’t even cross my mind that it could be something different. 

But when it came on, it came on really, really abruptly. And I reached out to my team and was like, “I don’t know what this is,” and they were like sounds like a fluky flare. And then, it’s like okay, again, is it the Whack-a-Mole? Like, is it that it will settle? Or is it levelling up? So, I was completely blindsided to be like, oh, it’s actually totally something different. So, I don’t even know what gaslighting was until, like, that’s a whole different part for me, I think. But like, until the last few years for other stuff, but like, I don’t know that I was so much gaslighting myself as much as it was that I just assumed I’ve already got this kind of bear of a disease that I’m fighting, it’s probably that, you know. And then you’re like, oh, it’s totally, it’s something totally different.

Cheryl:  05:28

Well, I think that it’s so complex because I think even physicians are famously taught in medical school, “If you hear hoofbeats think horses, not zebras,” like, you’re typically supposed to be the simplest most obvious explanation is, quote unquote, ‘usually correct’ or like, to a hammer, everything’s a nail. Like, to the rheumatologist, everything’s musculoskeletal or autoimmune, you know. To the cardiologists, everything’s heart related, and vascular, you know? To the orthopedist, it’s all about bones, you know. It’s like each specialist also sees things through their own lens. 

But I think if you actually looked at every new symptom and considered all the plethora of things that could possibly be, you would actually just, like, never do anything, because it would be endless, or like, it could be a pituitary tumor because I’m also sweating, or it could be, it could be like, so many, you know what I’m saying? Now with long COVID or with any of us who have gotten COVID, which I know that we didn’t even put that in my topic about, but it’s like, I’ve gotten a couple doctors with a couple of my symptoms that are, again, potentially in the realm of rheumatoid arthritis symptoms, but a little bit different than what I experienced in the 18 years before I got COVID. Is it post, as my physiatrist said, is it post-COVID, quote unquote, ‘weirdness’ that they’ve been seeing the last few years? Or is it —? So, anyway, sorry, that was a long rant.

Katie:  06:51

Well, no, no, no. And like, I think, like, for me, you know, it took me three years to get diagnosed with the RSD. And it was a horrible journey to get there. And it then took even after that, it took quite a long time, many more years, to feel really confident with my medical team. And I do. I am so grateful, because I know it’s not common that like, every player on the team, you know, it really does feel like a team, a medical team I have full trust in. And so, but it took a long time to get there. 

So, I think that when it’s like, oh, you know, a different specialist is looking for it to be their own thing. Like, that was a little bit true. But again, it was more the complexity of the disease was just already so confusing that it’s like, honestly, a lot of things could be RSD. And that’s something that when I finally got on the right path with getting treated for it, I was cautioned as a warning of being really careful that I don’t assume that if I’m feeling injured somewhere, that it’s not actually an injury, because I’m a little bit prone to thinking it’s probably the RSD that I could be neglecting something that’s actually wrong to me, you know what I mean, another thing that’s wrong. 

And so, that was a big thing said to me early on, like, to be careful in certain settings, you know, that I don’t just not get certain things checked out just because I assume it’s this. And so, I’m really grateful for the team I have, because that’s actually how — and I don’t know if you would have gone in this direction or not, but that’s actually how I got diagnosed as quickly as I did with the RA. Because once it was obvious that this was not RSD, it was like it was because I have this all-star team that it was like, okay, how do we figure out what it is? Because it’s definitely not — like, it’s not in our category of things. So, how do we figure that out? So, I was really grateful because that was not my experience getting diagnosed with the other, you know, pieces of the puzzle here, so. 

Cheryl:  06:59

Yeah, I think that’s actually great to go into, I mean, as long as you’re willing to. First of all, I always try to acknowledge the emotional labor it takes to go back in time and revisit these painful diagnoses, memories, you know, is a lot. It’s significant. So, thank you for being willing to share about it, because I know that people listening are going to feel less alone when you share this. Because so many people think, “Oh, I must have, like, I always blamed myself, like, I must not have explained it correctly. That’s why I didn’t get treated better,” you know, that kind of thing. 

So, yeah, and first of all, just do you have an elevator speech for what RSD is, or like, what are the kind of the most greatest hits symptoms of that, I guess, just to ground what that is, and then go into what your symptoms were and how you got diagnosed? 

Katie:  09:57

Sure. So, caveat for anybody listening, because I’m this way. So, just in case someone listening is this way, too. Sometimes I think we hear certain symptoms that are like, “Wait a minute, wait a minute, I’ve got that too.” So, let me be really clear and just say, that part of RSD’s weirdness, if you will, is that it does present differently for different people. And if caught early, most people have this localized. And it can get to a point where it can go into remission if it’s caught and treated fast. There is no cure for it. So, there’s no like, “Oh, it’s all better,” but a lot of people can get to that point quickly if it’s caught fast. That was not my experience. Therefore, I have a really different and more dramatic case of it because of how we got there. 

So, I don’t want anyone thinking, “Oh, my goodness, this is how this goes,” because it didn’t have to be and unfortunately, it is part of my story. So, when you have — RSD impacts your sympathetic nervous system. And while this is not medical or scientific, it is essentially like my sympathetic nervous system is wired incorrectly. It’s like it’s constantly misfiring, and telling my body that it’s in pain, and we need to address this issue. And in the attempt to address it, it’s actually inducing pain. 

So, it’s like short circuiting. And so, my body is in constant pain, everywhere. So, I am super, super sensitive to light touch. So, sometimes I can’t wear certain pieces of clothing or my hair has to be laying on me a certain way because like the reaction that I get feels like more intensified pain, fiery, like burning, stabbing, shooting pain for me. Some people get color changes to the affected area, some people get temperature changes to the affected area. For me, that happens occasionally. But again, I don’t have a localized pain. So, my pain spread because it took a long time. It began in one spot in my back, and eventually over time — and it was intermittent — and eventually, over time, it became consistent, and it became all over my body. So, there’s no area on my body that I don’t feel dramatic pain 24/7. So, when you can’t, because there’s no cure for it, it’s like, again, depending on when you get diagnosed, it’s like, okay, where has it progressed to? And how do we best attack it? 

And so, for me, there’s not really attacking because it’s already spread everywhere. Now, it’s like, how do we manage the pain to the point that you can live as comfortably as you can, to live your life as best as you can. So, for me, what that looks like is, you know, pacing my life differently, taking different medications, seeing multiple different specialists. And every three months — and it is not how it started, but as its progressed, this is where the need has been, is that I go into the hospital every three months for an infusion, a week-long infusion, of ketamine and lidocaine. And the combination of those two kind of suppresses my sympathetic nervous system. It’s almost like, it’s almost like a great Band-Aid. It’s not fixing the problem, it will return again. 

But for the moment, it’s like, let’s everything just calm a little bit. So, I describe that pain like the volume on a TV. And I say, like, if you’re watching TV, you know, and someone’s talking to you, as long as the TV is a certain level, you can hear the person talk. You might not hear both at the same time, great, but like, it’s background noise, and you could hear the person talking. And for me, it’s like that’s how the pain is, is that like when after that infusion, it’s like, okay, the TV’s gotten turned down, and I can hear you and I can know the pains there. But eventually, that volume is going to turn out louder, louder, louder. And now it’s gonna be like, you can talk, I see that you’re talking but I can’t hear you because all I can hear is how loud the TV is. And that’s like how loud the pain gets. So, currently, that’s our best management tool for that, but there is no, “Oh, this is our one thing to stop it.” So, that’s severe, and not everybody’s in this situation because a lot of people have it localized, there’s different treatments you can do for that. But that’s not my experience. But that’s also why it gets complicated to why when new pain comes, it’s like, “Oh, it’s probably this,” because it’s already pretty intense, so.

Cheryl:  15:16

Yeah, and you’ve had to cope for so long with such a high degree of pain that it’s almost like a, lot of patients with chronic pain end up kind of dissociating from their body and to some degree, or distracting themselves. So, then they’re like, well, I don’t want to pay attention to this new pain, right? Because you’re like, that’s my coping mechanism, is not paying attention to the pain.

Katie:  15:45

That’s actually a huge lesson I’m still currently learning. Like, even my pain doctor that’s been with me the longest who treats me for the RSD said to me literally just the other week. He’s like, “Katie, I need you to try to stay in your body.” And it kind of jarred me when he said it. And I was like, thinking about it like, he’s right. Like, it is so easy and tempting for me, when the pain is so bad to just bulldoze past it, because it’s like, I can’t fix it. And I don’t want to pay attention to it. But in doing so, it’s like — I’m like grabbing myself naturally. Because I’m like, thinking about it like, oh, I’m not being tender to my body, you know, in the process, you know. And so, I’m really learning how to, when to distract, because there’s just too much and like, towards the end of an infusion cycle, when we get to there, that is exactly where I am, you know. And then, when to be like, okay, this is a lot, but I don’t want to look away, either, because I want to care for my body.

Cheryl:  16:44

Yeah, that’s been — and I don’t, I would not classify the pain I have had typically from RA, I would not classify that as severe. So, I don’t know what that’s like. I’ve only had severe pain in acute situations, like my C-section, or my pilonidal cyst surgery, or my car accident. But it’s more like mild to moderate. But even with mild to moderate pain, technically, my disease is actually classified as moderate to severe, but I would classify my pain as less than that, if that makes sense. 

And my therapist who is not — he’s actually more of an OCD specialist than a pain specialist, interestingly. But OCD, there’s a weird parallel because the same thing with OCD is that you try, like, the more that you try to distract yourself away from those intrusive thoughts or compulsions, the more power they have over us. We have to learn how to just sit with this uncomfortable thought. Like, if I don’t wash my hands again, like, I might die. Like, that’s a thought, uncomfortable thought. And the same way with the pain that you have is so uncomfortable. But it’s like, that which you hold, holds you. That’s from Tom Robbins. So, the more that we hold on to, like, I have to get rid of, I have to distract myself from this pain. The pain is more powerful, because you’re saying – but anyway, I don’t know, sorry, this is about your story. 

But that’s really, that was gonna be one of my questions. So, just thinking of the audience who might be listening being like, wait, who treats this? So, you mentioned the pain doctor?

Katie:  18:16

Yeah. So, there’s a few people on my team that isn’t in the RA, and I promise I’ll get there fast because this connects but so, I see the person that is treating my RSD. I’ve seen different people. Believe it or not, the actual first person who diagnosed me with the RSD — I don’t even remember this because I was a teenager, my mom told me after the RA diagnosis — was a rheumatologist. I totally did not realize that at the time. But I’ve never seen a rheumatologist for this disease after that, and that was a poor experience. So, like I don’t, I don’t know how or why but he was a rheumatologist and that’s who diagnosed me. And that was the right diagnosis. 

But anyway, who actually treats it is like a pain management specialist but who oversees — he treats different people with different high intense pain disorders. But then, I also have a physiatrist on the team, who I love. The infusion specialist who primarily works on a, it’s called a pain team, but he’s on a pain management team that works with people who receive ketamine. And then, I have the neurologist for the migraine. And then, obviously, the rheumatologist for the RA. But the physiatrist, the pain doctor, and the infusion doctor work very closely together. They were the ones that when we finally were like, “This is not RSD. What’s going on? Something’s wrong.” The physiatrist, I always say, I felt like she became like, project manager of my pain. It was like, all of a sudden, she was like, all right, like, we need to investigate further, like, what else is going on? And so, she masterfully decided that because I was kind of shocked how horrible I felt all of a sudden with these symptoms that I just didn’t know where they were coming from. 

And she was like, if we time this right, we can probably get you seen when you go into the hospital for your next infusion by a couple of different teams to just see if they can figure out what’s going on and probably get some imaging expedited because you’re already in the hospital. And so, before I went in, I did know that for my infusion, I did know that my lab work came back flagged, that clearly there was something going on. And then, they did imaging. And I got seen by a few different people. And I got diagnosed when I was in the hospital for this treatment. And I was very fortunate because, like I said, like if someone wasn’t like, pushing this along, I think it could have been a really long time for me to get seen. So, I got diagnosed in the hospital, but not because the RA was that severe. But because I was already in for severe pain for the RSD. And so, someone, like, I sat on my bed and was delivering this news. 

And I remember thinking, in fact, I remember saying this the very first time in a Rheum to THRIVE group, I remember getting told, like, so, you know, it’s rheumatoid arthritis. And I remember thinking, like, why is everyone breaking, like, seemingly breaking this news to me, because I just had no idea what rheumatoid arthritis was. So, I’m like, okay, like, why — 

Cheryl:  22:15

Why are you so serious?

Katie:  22:18

Why are they so serious, why are they apologizing? Like, what’s going on? Like, just not a, not a clue.

Cheryl:  22:24

Me exactly. I was elated, personally, because I — but in my case, I had no diagnosis other than gastroparesis, which explained my stomach symptoms and weight loss, but not these other symptoms that were, that were more — I mean, unintended weight loss is actually a symptom of rheumatoid arthritis, it’s just not the one most people think of. So, anyway, so I was like, I felt like, I’m like, I’m waiting for them to tell me I have like stomach cancer or something. So, when they said, “You have rheumatoid arthritis,” like most people just think arthritis, I’m like, that’s not a big deal. Like, great. Give me the medicine, like, fix this. 

Anyway, so, it’s not that uncommon, because when I tell them, a lot of people say, wow, because they’re like — okay, but back to your story. You were like, everyone’s really serious about it. They’re like, “Okay?”, and you’re like, “Okay.”

Katie:  23:08

Serious. And I’m like, I clearly — I’m like, okay, and I just didn’t respond. Like, in hindsight, like, when it finally caught up to me what was going on, I wished for that moment all over again to have had a chance to ask questions and emotionally react, because by the time I had questions and was emotionally reacting, all of that had gone away. Because at that time I was like okay, so they moved on. And I remember telling, like, my favorite nurse who would come in later to check on me. I was like, “So, like, someone just came in and gave me this diagnosis.” And she was like, “Oh, Katie,” and such a reaction, I was like, why? What is going on? Like, what does it —? And I’m like, yeah, still not tracking. 

So, it wasn’t until my mom and my mom, like, had this reaction. And I’m like, what? And so, it finally took until, like, someone paused and explained to me what it was. Because I just thought, I didn’t realize arthritis had such different, so many different branches, and so many different, like, what it means. I just was, I just was not — I had no clue. I was so naive. And so, when it was like, okay, this is what’s going on. This is why people are saying it this way. This is why people who know me and care about me and know I’m already carrying a lot of pain are reacting this way.

Cheryl:  24:38

It’s like, you have a one kind of —

Katie:  24:40

It’s all —

Cheryl:  24:41

Oh, sorry, sorry. I did not mean to —

Katie:  24:43

No, it’s okay. It’s like all catching up to me. And it was like, okay. What I didn’t expect is to walk out of the hospital with a new pain disorder. Like, that, like — you know what I mean? Like, I was like ready for them to be like, something deficiency and here’s a pill. Like, I just was not tracking with — it wasn’t even on my radar that I could be walking out with a new doctor. That was probably the most overwhelming, like we’re adding yet another person to the team and a new diagnosis that was not just like, “Hey, do these three things and you’re set.”

Cheryl:  25:21

Yeah. Another very complex, very huge spectrum of possible severity, possible response to medications. It’s, yeah, anything but straightforward, right? It’s be one thing to be like, “You have iron deficiency anemia, and that explains your fatigue. We’re going to give you iron and you’re gonna feel better,” like great, you know?

And I totally, a lot of people I’ve talked to, including myself, if that makes sense, feel kind of like, I’m used to — it’s like the devil you know. Like, I already got used to this one thing, like the RSD. Now you’re telling me to get used to some — and the migraine, at this point, you already knew you had vestibular migraine. Now you’re like, it’s like fatiguing, now I have to learn this new thing.

Katie:  26:03

Yes. And I, the migraine — and again, not to minimize because so many people suffer so much worse than with migraine than I feel I do. But I was living for a while assuming that that was a side effect of the RSD. So, primarily, I was so focused on the RSD. And at this point now, I have people who can explain things to me or I’ve been living with it long enough. So, to have something totally new, and then to have my doctors be like, “I mean, we’re gonna work with your rheumatologist but you need a rheumatologist,” like made me want to cry. Because I was like, can’t you just do it? Like, because now we’re going to explain to the rheumatologist about the RSD. And I’m like, when did I become complex? 

Like, you know, like, I just, I don’t want to be complicated. I want to just be like, this is, yeah, this is what we treat. I don’t know, I just was grasping to any sort of illusion, I think, I had that I could still be normal. And I need a new word for that. Because I don’t mean to imply that I’m not normal. But I mean, it was like I was constantly living this double life or something of like chronic illness and my, you know, life as though I don’t have illness. And it’s like, that’s just, that any leftover attempt of that was shattered when the RA came in, because it was like, okay, I can no longer hold all of it. And honestly, I couldn’t have said this at the time, but honestly, probably for the better. Because this is forcing me now to come to grips with the end of like, “Yes, this is true,” and, “This is true,” and not try to be like, okay, now I’m going to put this hat on, and I’m going to be going to doctor appointments. Okay, now I’m putting this hat on and I’m professional, like, it’s no, it’s just both, it just is both, you know? 

And it can’t be separated. It’s unfair to me if it’s separated, like I’m a whole person, you know. And so, RA shattered some things for me that honestly, like hurt really bad at the time, but it was for the better. But including I settled for a doctor, a rheumatologist, who my team was not a fan of and I was like, “It’ll be fine.” And it was not fine. It was not fine at all. And they were right. But in my mind, it was like, I was unwilling to start all over again with the process of finding a rheumatologist, like, I don’t wanna do that. I did this with the RSD like, I want to just, it’ll be fine. You guys are the primaries, and he — and it’s like, nope, nope, nope. Like, we need to love this person, whoever it is, like, we need, they need to be willing to work on a team. 

And so, it took time, you know, to be like, okay, like over that, you know. But when I finally got to the doctor, the rheumatologist that I see now that I really like, I remember thinking, I need a welcome binder of like, “Hi, I’ve just been diagnosed with RA, and here is your literature, and here is how you’re going to live, and how you’re going to function, how you’re going to do anything,” and it’s like, no, that’s not here. Okay. And, oh, these appointments are maybe 20 minutes. Like, okay, also not used to that, like, you know? Like I’m just so used to living with something different where the protocol is so different, where it’s like, appointments are so long. And this is like, what’s going on? And it’s like, I just, it was a whole new world. I was — I kept saying, I know how to be a chronic illness patient. I know how to be a patient. I’ve been doing that for a long time. I do not know how to be an RA patient. And someone needs to teach me, like —

Cheryl:  30:00

And then you found Rheum to THRIVE and everything’s better now. No, I’m just kidding. [Laughs]

Katie:  30:04

Okay, but honestly, no, but honestly, yeah. Like, because I felt like I was just like, I was like, I felt like I was losing everything. I felt like I was losing my life, and I fought so hard to live my life with pain. And it was like, everything’s slipping through my fingers again, and I don’t know what to do. And like, we can’t solve this in 20 minutes. And I’m just so confused. 

And like, everything I was reading on the Internet felt so like, I’m like, this is not helpful. I need someone to explain what’s on the Internet and explain — because if someone came to me and said, “I just got diagnosed with RSD,” I would be like, “Stay off the Internet. Like, this is what you need. Read this. Listen to that,” like, because I know what sounds true and right. But also hopeful, you know what I mean? 

And also like, and I don’t mean hopeful, like, you know, like unrealistic. I mean like, you can live. You can live your life with this, too. And I needed someone to tell me, “This sucks. This is terrible. You’re going to be able to live your life.” Like, I needed that so bad. And so, I was searching. I was like, okay, like, the Internet’s not helpful. Like, I need to listen to someone. 

So, I just started randomly looking up podcasts to just try to see, like, could I find anyone with — like, who could just teach me. And how I found you actually was your podcast first. And I binge listened to like several podcasts because I was just like, I need someone to explain this. And like, that’s how it started for me. Because I was like, and then it was like, oh, wait, I could actually join a group that could —? Like, oh, my gosh, like it just, it was exactly what I needed at the time. Because I was so confused. 

It’s like you gave me my binder, do you know what I mean? Like, I needed, I needed that, like, “So you’ve just been diagnosed with RA?” Like, you know, and like, here it is, you know, and — oh, gosh, that was a turning point for me in like acceptance, I think, you know, and then knowing how to advocate. But acceptance, I think, too.

Cheryl:  32:28

Yeah. Oh, my gosh. Well, and that’s wonderful to hear. And it’s such a full circle moment. I’m like, feeling very surreal right now that like, you know, now you’re on the podcast. 

Katie:  32:37

Yeah, I know.

Cheryl:  32:38

Crazy. Anybody listening to this, and you’re saying — so, I’m like, this is like Inception, like, and then that person will join, and then they’ll come on the podcast.

Katie:  32:44

Right. Right. I know. When you said that, I was like, that was touching to me, because I thought like, that’s literally how I felt. Like, that, to me, like, now my algorithm, like, now I know what to look for, but like — and RSD’s online community is not a very hopeful place. And I, it’s probably one of those things where like, if I want to see change I need to be, but like, I just don’t have capacity for that. And so, like, I didn’t even pause to consider that the online community for RA could be different or chronic illness community, like, broaden it and just be like chronic pain or chronic illness, could be different. 

And so, I was like, oh, oh, oh. And so, now, I feel like I know what to look for if I’m continuing to look for, like, “Has anyone ever tried this medication?” Like, I know how to like, search that on social media, like I know how to figure that out, where at the time I didn’t. And so, like now, my algorithm leads me to those things, but at the time, it was like, I don’t know, a podcast? And so, I was like, oh, this is a wealth of information. And so, anyway, it was full circle for me, too, be like, oh, and now like this is what got me on the right track, you know, and I’m thankful to have it and talk to you.

Cheryl:  34:01

Oh, that’s, yeah, I mean, one of my, yeah, one of my motivations for creating Rheum to THRIVE, I actually initially called it the Rheumatoid Arthritis Roadmap. Those of you who are listening to older episodes will hear like old ads for Rheumatoid Arthritis Roadmap because I baked them into the episodes not knowing about dynamic ad insertion. Anyway, but that, I called it The Roadmap because that’s what I recognized people need. And now, I kind of call it the self-paced course, the Rheum to THRIVE course is like, the roadmap, you know?

And then, the group is that, like, social support and that a little bit of — I’m not, I’m saying this in a positive way, handholding. Because we need handholding. Like, this is too much for most people to go through on their own. We need someone to say like, that, you said realist — or I wrote down ‘realistic hope’ as you were talking. I don’t think you actually said those words. But like, that’s, you said hope that was not like, you know, sugar coated or toxic positivity and stuff. And that’s really what I tried to figure out. 

How can I give people hope, while also acknowledging, like you said, like, they’re gonna have days that suck, you’re gonna have — like, it’s almost the elephant in the room sometimes. Everyone wants to give people hope by saying, “Don’t worry, we have all these tools for pain and tools for fatigue.” And like, I will teach you all of the evidence-based tools for pain and fatigue. But I also will acknowledge that sometimes you are going to use every single tool in your toolbox, and you will still have pain and fatigue. 

But it’s like, so many health providers are like, we don’t want to say that, like, don’t tell them, you know? Because it feels like you’re gonna be giving people less hope. But it’s like, okay, but then can we say: no, this is – that this is reality, right? And then, can we say, can we find moments of joy, even in the moments when you still have pain?

Katie:  35:46

Oh, I just need to — now granted, this is like, deeply embedded in my story, which is why this probably resonates so much with me. But that, like, “Hey, there’s gonna be days where you do everything you possibly can, you’ve done everything right, you’ve done everything, you’ve tried all the things and it’s like, nope, still there,” frees me. Because I, when I first was taught how to manage pain, not RA, how to manage pain, it was in what I now know was a very toxic, like, environment. And it was lots of gaslighting. I didn’t even know what medical gaslighting was until, like, all these, like, all these — but like, I hadn’t heard of those terms. I hadn’t heard of like, so like, or, yeah, or toxic positivity. 

And so, in that environment, where I was first learning how to manage pain, and I was a teenager, so I was super impressionable. Like, where I learned how to manage pain, I was told that this was dependent on how much I do. And I was also promised a cure which I shouldn’t have been promised, because that’s not even a thing. But my point is, is that it was dependent on if I try hard enough, this will take place. And so, when I got out of that environment and into a new environment, what I was taught there — I was in like a pain clinic — and what I was taught there was, yeah, so you, you’re not going to get a cure. But we’re going to do everything we can to teach you how to manage pain safely and live your life. 

And I sobbed because it was like it freed me to know that I can try as hard as I want, and I’m not gonna be able to do this. Because then it wasn’t my fault anymore, you know what I mean? And so, to be in environments where it’s like, “And some days, it’s just, it just sucks,” like, there’s this weird exhale, because I can release myself from trying. “But maybe, okay, but maybe if I exercise a little bit more, maybe if I —” like, no. Like, just rest and like, be free in listening to your body and saying, “That’s what your body needs right now.” And so, that’s only ever validating to me when people say that. I know for other people, they’d probably be like, “But just tell me what to do. And I’ll do it.” But it’s like, that’s how I lived for so long. And I felt burdened and trapped by that, and that it was my fault.

Cheryl:  38:38

And I use that same word, ‘burden’. It feels, it’s an unburdening feeling to say that, like, I mean, some things are simply out of our control, you know? And you control everything that you, you know, spend your time wisely, right? Saying, you know, you mentioned like, sorry, I’m like starting six different thoughts. 

But you mentioned this kind of haunting, or I call it like a haunting of like, “What if I —?” Yeah, what you’re maybe if you did exercise more, your pain would be less. But like, you can’t live your life owing — you have to live, you have to, at least for me, to achieve some sense of true connection to the world as it is and joy and thriving, I can’t let myself get wrapped up in that, right?  If you just say, “All right, maybe my life would be better if I ate more broccoli,” but like, I’m just going to keep going because I’m, you know, I maybe only have 40 years left on earth. I don’t wanna spend the whole time, like, berating myself for not doing, being a perfect patient. Because the goal — and this is something I’ve been working on, I’ve had like a half-baked idea for an Instagram reel on this — but it’s like, the goal of symptom control isn’t controlling symptoms. It’s being able to live your life. Or you control symptoms so that you can live your life. But if you think that if your whole life becomes about controlling your symptoms perfectly, then it’s like the snake eating its tail, right? It’s like, what’s the point? The point of doing lifestyle interventions to, again, improve your symptoms is so you can have a better quality of life. Well, what if you can have a better quality of life without your symptoms being perfectly controlled? That’s just another way to achieve, you know, I don’t know, does that resonate at all?

Katie:  40:19

No, it does. Because that’s kind of how I feel with my medical team. Like, listen, I’m not saying that, like, I’m not trying to say like, oh, I don’t hope for a cure. Of course I hope for a cure. But if I walk around everyday being like, “Maybe if I do this formula exactly right, like,” oh, my word, like, that is enslaving me to a life I don’t want to live. And so, it’s like, no, no, no. I’m going to do what I can. And I’m going to need you guys, medical team, to tell me when there’s something better I could be trying or doing, like, you come to the table with that. I’m gonna keep living because your goal is to help me go live my life. 

And they tell me that all the time, you know what I mean, of like, you know, like, “Guys, I have this upcoming thing for work. I really want to do it, but I’m probably going to destroy my body the process. Thoughts?” Like, let’s talk about it. Like, what, like, you know, like, it’s, this will do my heart, but like, I need to deal with it. Like, okay, so it’s non-negotiable. But it’s like, what — is there anything else we can do to try to make me comfortable, or help me in the come down from it? And if not, okay, well, we’re not going to like, shake our fingers at me like, “Uh-huh, probably shouldn’t have done that.” Like, because like, I can’t live like that. I can’t. And in the meantime, I hope that you guys are keeping up to date with research and stuff on like, oh, what if we tried this? 

I mean, I got more relief in my infusions when we added lidocaine, you know, we hadn’t always been doing that. So, it’s like, when, like, there’s always these tweaks and adjustments to make and always hope for better for me. But it’s like to sit there and go, like, “What else can I maybe do…” Like, I just, I did too much of that in the beginning. And I don’t want to keep living that way, you know?

Cheryl:  42:16

Yeah. And — yeah, I think that your previous 16 years before your RA diagnosis maybe prepared you a little bit to be able to accept a little bit of the role of randomness, right? But I think with RA there is this — so, I know a little bit about what I was trained in OT school as complex regional pain syndrome, or now reflex sympathetic dystrophy, RSD. I know a little bit about that. And it is, the thing that I think is a little different from RA to that is that with RA there’s this kind of carrot dangling in front of you of remission. Like, there is a possibility of remission where, meaning no symptoms, you know, or low symptoms. Whereas with your other conditions, it’s more like there maybe it’s not this. 

So, it’s not a cure, but it’s like a, you can get on medicated remission, or in very rare cases people do get unmedicated remission. So, I think that does complicate things in the beginning because you’ll get these experiences of so-and-so went on HUMIRA or in my case, Enbrel, and went into medicated remission for six years. And I just literally lived like, a very, very, quote unquote, ‘normal’ 20-something life. I was swinging dancing three hours a day, five days a week. I was working full-time and all this stuff. And there’s that possibility. But there’s also the possibility that it could get progressively worse and all the medicines could fail you, you know? 

Katie:  43:40

Well, okay, but see, that, like, I know I shared with you before, like, I thought that I wasn’t gonna talk at Rheum to THRIVE which is a joke, of course, now. But like, but what I meant by that was not that I didn’t want to share but it was more than that. Like, I think I could just sit and listen to everybody’s stories and walk away be like, “Wow, that was so good.” Like, I still feel that way because especially being newer to it. I’m like, oh, my gosh, teach me everything you know.

 But I remember the first time I heard someone say — it could have been you — but somebody was sharing in there, like, “Oh, yeah, and then this medicine no longer worked for me.” And I was like, wait, what, this happens? Like, I didn’t know, you know what I mean? But this is the kind of stuff that- it’s like, teach me, teach me, teach me, teach me. 

I want to know from a human who I ideally can learn more from and gain a relationship with versus random, scary article on the Internet because I know that you could do the same thing for RSD and see a hundred scary articles on the Internet. Like don’t do that. Find the safe spot, you know what I mean, so that was brand new information to me, too. And so, anything like all the autoimmune anything, I’m like, oh, I don’t understand anything in this land over here. Everyone’s gonna need to see teach me how to like, what does this mean? What does this look like? And I genuinely got a crash course in it when I made this the like, okay, this is where I’m gaining, this is where I’m learning, this is where I’m gonna get information. And I’m not trying to say in place of my medical team or doctor. What I mean is, is that it was like, I’m not researching, I’m just focusing on this, do you know what I mean, like, and I think it’s so helpful.

Cheryl:  45:31

I just, you know, it’s like, on a very, very, very basic level, like, when I’ve talked to different medical providers, because, you know, I go to the rheumatology conferences, which are multidisciplinary, so we’ve got nurses, nurse practitioners, you know, different rheumatologists, different other related doctors. We have, you know, OT’s, PT’s, and I’m like guys, like, it does not matter how amazing the rheumatologist is, 20 minutes every three months? What do you think the patient’s going to do? Like, just be realistic for one second. Like, do you think that they’re not going to go home and immediately look up on the Internet if you only give like — it doesn’t, it just is not — I think there’s — and they’re like, “Well, we don’t want patients to like, just Google,” okay, well then give them more than, like, you either need to give them more than 20 minutes or not fault them for googling because you cannot expect someone to get such a complex condition and give them no education and support. I just think that they’re not looking at through the lens of the patient’s real lived experience, you know?

Katie:  46:34

No, I’m sure. But like, I’ve had to start — and for the record, I think my rheumatologist is great. And but like, I’ve had to start saying to my rheumatologist, like, stop. And once in a while be like, I am still learning this. Because sometimes they’ll say something as if I know it. And I’m like, all of a sudden, I’m thinking like, oh my gosh, you’re probably talking to who knows how many patients a day, and there’s no way you’re remembering who knows what thus far. So, like, how would I know that? We’ve never talked about that before. So, I’ll have to say something like, “I’m still learning this,” like, or, “I don’t know this is a thing,” or like, “I reached out over like, like a portal,” you know, which I’ve done before for other doctors, but like, I didn’t even think –  I was like, desperate. And I was like, let me just see if he’ll answer. He answered me, like, so fast. And so detailed. And I was like laughing because I was, oh, right. Okay, so this is how you keep up with everybody, because it’s only 20-minute appointments. So, you’ll — yeah, that’s fine. I can email you. 

Like, whereas my other doctors, it’s like, maybe three to five business weeks. Do you know what I mean? Like, oh, oh, oh, but I know, like, now I know, you know. And so I’m starting to — or the other day, you know, when I was throwing out to the group, like, hey, like, this is my situation. I don’t know, I’ve not been, I’ve not done this before. Does anyone — can anyone tell me does fatigue and brain fog, do they go hand-in-hand? Like stuff like that, now knowing like, okay, I don’t need to wait to ask the doctor, I can ask the community, I can hold the audience and say what’s the idea here so at least I can go in the right direction, then saying to the doctor, “I think I’m experiencing this. How can I get help?” versus like, “What do you think it is?” you know what I mean, because there’s a community now to ask. 

Cheryl:  48:33

Yes. Yeah. And you’re in the — so, a lot of people have been, have asked me like, okay, wait, you have this initial 12-week Rheum to THRIVE support group option. And then, we also have an alumni group that I don’t have on the same page and it doesn’t matter but like, that’s, I don’t have it on the same part of the website because it might confuse people that you have to do the initial group, kind of get that foundational knowledge, and then if you want to keep having the support group meetings every week, you join the grads — we call it the graduates, and it’s been really, it’s really great.

Katie:  49:06

Yeah, if I can make a plug though for that though, because like, I was someone — and I said this in our in our initial group like as a point of feedback. For me, taking the plunge to join a group is scary in my opinion, or could be scary. But some of the things that were immediately common to me is that having to pay into it gave me this immediate sense of relief that like it wasn’t just going to be anyone and everyone. And yeah, maybe I’ll show up, maybe I won’t. Like, and that’s not a pressure thing to show up every time. I just mean like there was this natural accountability of what this group’s gonna be. The fact that you control the size of the group, that was super helpful for me. The fact that you were going to, like, be a — what am I trying to say — like a moderator for the group, like, you know, lead and guide the group, was such a comfort to me. Because it was like, okay, because I’m a kind of person, personality wise, like, if no one is sharing in any kind of group, I will naturally step up to lead and it’s like, I don’t want to lead. I can’t lead. I don’t even know what I’m talking about. I need to know that someone else is like, “I’m holding it, I’ve got it,” like, you know what I mean?

And so, that was extra comforting to me. And then, by the end of it, like, knowing that others, this graduates group, but everyone in that group has to have gone through the material, was like, oh, great, now we’re all speaking the same language. So, now it’s like, it doesn’t matter. It doesn’t matter if you’ve been two weeks or two decades more, you know, whatever, like, into your journey, we all have the same foundational language because we just did this together, even if we didn’t actually go in, if we weren’t in a cohort together or whatever. Like, we all have the same material. That feels, like, oh, great, now we can have a conversation, knowing those things are still true. Like, it would, I think, feel different if you could just bypass that and just go right to that. I think that’s super important that you have it structured that way. And I would just encourage anyone that’s like, I’d like to get to that part. Like no, no, no, it’s really good to have, to all be on — it’s like you all took the same class. Like, it’s not, I know it’s not a class.  But it’s like you all have the same language.

Cheryl:  51:30

Yeah, it’s like you’ve taken the orient — it really is, I think, the orientation course, like Rheum to THRIVE is like, get grounded, understand the basics. And I do a lot of myth busting, you know, like, here’s the deal with diet and nutrition, like, this is what the evidence says and I’m gonna help you make sense. Like, why is it so overwhelming and confusing? Here’s some reasons why. You’re not doing it wrong, it’s just confusing. And like, the data on sleep and exercise are a lot more uniform, like this is, you know, some additional things.

 But the thing that really people end up saying, like, they come to the course like wanting like the tool, the pain management, the pain relief, and the, you know, basically understanding their condition better, understanding how to advocate. But the sections that are on, the sections that are on relationships and social support, inner world, coping, acceptance, and then on values like connecting to your values, what values do you have, and what do you value in the world? Is it giving back? Is it nature and environmentalism? Is it this or, you know, and it’s interesting, I just had the first person who said, like, they really were like, that was my favorite part. And I was really happy to hear that. 

Anyway, because a lot of times people are surprised at the relationship section and the social, you know, it’s really, honestly, we need social skills training for how to be in the social world as someone with a chronic illness because we’re gonna get all these weird comments and friendship complexities. And I know that you have been lovely and open enough to share that in the group at times that, you know, a lot of people struggle to get friends and family or, quote unquote, ‘I’m struggling to get people to believe me’, or to get people to understand why I’m saying ‘quote unquote’ because I don’t like to see it that way. Because it’s not, you can’t make someone understand anything – you can just provide them information and they have to decide whether they’re gonna understand it or not, you know? But do you want to — sorry that was long — but do want to talk about that? 

Katie:  53:36

Yeah, I think that just like I, like what’s so bizarre is that, so like, 18 years ago, right, like, pain started and I did this once before. And so, socially inept, like, it had a totally different social dynamic at that point, but to — I would say, of my friends, not my family, my friends, like most of them have only known me with pain. But they all know me with like a basically coming at you, like educating you, like, “So just so you know, this is what’s going on. This is why I can and can’t do certain things,” and whatever. And they’re not, I would say, overly distracted by my pain, but they understand because I can calmly educate you. If my friends who were my friends before I had the RSD, like they remember how just deer in the headlights I was until I got to this point.

 And so, now going through this with even friends who have known me with pain but don’t know me with RA are like, “I don’t understand, you’ve been living with pain the whole time. Like, what’s the problem?” And not in a, not being unkind. They just, they literally don’t understand, do you know what I mean? “But you’re always in pain.” That’s like, right, but I don’t understand either. I’m learning. I’m not at the point yet. 

I always say like, there’s this weird fantasy I have in my brain of like, I wish I could just hide in a closet, figure this all out, come out and be like, “Okay, here’s the plan. Here’s what, here’s what’s happening. Here’s what’s this.” Like, don’t look at me until I’ve figured this out. I’m gonna figure it out, do you know what I mean? And then I’m going to explain it, I’m gonna educate you, and I’m gonna explain it. And it’s a big deal. And it’s like, it’s the most awkward thing now for me to do this essentially all over again.

But as a professional, and as a friend, and as an established, to be like, here, watch me like, be clunky as I figure out how to walk this way now in my relationships, in my professional life in my life, you know? Because I’m going to make so many mistakes, I’m going to overdo it. And I’m going to do that. And you’re going to watch that.

 And on the flip, it’s like, they’re like, “I don’t even know what to ask you. I don’t even know, like, do you want to talk about it? Like, I don’t even know what’s going on,” because they don’t understand either, because I’m not educating.

And so, it’s been really fascinating to me to see how often I fall short on words of what to say, but I’m like: I’m lonely. I need help. I feel scared; I’m overwhelmed. But if I open my mouth, am I just going to be sharing things that are too sad to hear? Like, how are my friends gonna respond? Am I gonna lose all my friends? All of these things that come rushing to my brain, and, you know, what’s going to happen if like, I can’t socially, like, keep up anymore, even the way I was living, you know? Because I haven’t gotten, figured this part out yet. I haven’t figured it out how to manage my energy different, and I haven’t figured out, like, I don’t know what I’m doing, you know? 

And to see who’s keeping up with that, and who’s like, can’t even look at me is, is really painful. And that is something that I think has been so helpful in this group. Because I vulnerably said that a couple months ago, I think, actually one of the first times in like the graduates group. And like, not without a gentle tone. Like someone did say, like, “No, that’s a thing.” Like, almost like, you know what, in some ways, you’re better off sharing some of these pieces here, you know what I mean, and not even trying here — and it wasn’t without being gentle about it. But it was like, okay, yeah, some of this is just too tricky to explain.

 And so, I’m still navigating, I think, that socially. But family wise, like, my family has been very supportive. What’s been really, really hard for me is is that I currently can’t live independently, and I was living independently. And so, that was like, kind of heartbreaking for me because I’m like, okay, I’ve still not gotten this under control enough to be able to feel confident about how to do certain things. Like, I just need a lot of help right now.

Cheryl:  58:27

That’s a lot of pressure to put on yourself,” I haven’t gotten this under control,” do you know what I mean?

Katie:  58:35

I do see that. Yeah, I think that’s a lot of unlearning and relearning I’m still working on.

Cheryl:  58:40

Sorry, I don’t mean to be like, I’m just pointing that out to be like, the language we use is so important, right? Because I think, and you obviously strike me as, obviously, you strike me as like a very intellectual person, right? And I think intellectual people have a really hard time with chronic illness a lot of times because we’re used to solving the problem. Or what my therapist would say, like, you’re really good problem solver, which is great for solvable problems. Not all of your problems are solvable. 

Katie:  59:09

Yeah. Yeah. 

Cheryl:  59:10

And it’s —

Katie:  59:11

But that —

Cheryl:  59:12

Sorry.

Katie:  59:12

Yeah, no, yes. No, no, yeah, no, you’re right. It is. And I think — and I think like, but like, you just pointing that out right now like that falls in the category to me of things that I never even paused to consider until I joined this community. And it’s been the most helpful and sometimes, like, extremely eye opening to be like, oh, you know? And sometimes it’s sometimes it’s just the language for me. And like, sometimes of like, oh, this is what I’m doing, or this is why, or where did that come from? You know what, I think I was taught that, or whatever that you know, happens in my brain, and there’s like 30 seconds when I hear it.

 But it also is like, yeah, but the thing is, is that I think that I so badly, again, want that binder that says like, “Hey, when you reach month whatever, when you reach year this, then you will plateau and you’ll be fine.” And no one can give it to me because it doesn’t exist. But that’s what I want, you know what I mean? So, it’s like, someone tell me that like, listen, you know, like, and I don’t want to be told, “Well, you never know what the future —” Stop it. Like, I don’t want to be told someday that like, just, I’ve had to let dreams that I have for my life be laid down for a while. And for a while, I thought they were dead. And then, I was like, no, they can’t be dead like but they definitely are laid down, you know? Because like right now, I can’t chase after them. And that’s not to say that I can’t pick them up along the way or have new dreams. 

Like, it’s just that it’s been like, that’s been really hard. And a new layer of grief for me, because I am so much more limited than I have been before. And I’m learning how to live this way. And I’m learning to be gentle with myself. And I’m not good at it yet. I’m not. Like, being gentle with myself is very, very hard.

Cheryl:  1:01:13

That’s so true. That even just the idea of saying, “I’m not good at being gentle,” is like an ungentle thought towards yourself.

Katie:  1:01:20

No, but it, no, but I actually, I stand by that one, though. Because what I mean is that it is tempting to me to go back to these roots of where my pain management skills were initially taught to me, of like, bulldoze past it. Don’t trust your body. Don’t, like, your body’s just gonna be constantly in pain, just keep moving. And like, I’m like, yes, we’ll do it. Like, got it, you know? 

And now it’s like, be gentle, be gentle, be gentle. And like, so like, okay, okay, okay, okay, okay. And like, when I say, “I’m not good at it yet,” I’m not actually beating up on myself. I’m acknowledging like, no, I’ve got work to do, to be gentle with myself. And that’s not like, ‘work harder’ being gentle. It’s like, now it’s like, surrender what can’t, you’re not in control of and learn. 

Like, again, going back to what that doctor said about staying in your body, like, learn to, like, stay present in your body and not hate it. Like, you know what I mean? Hate the disease, not the body. And like, it’s like, I didn’t even think I was. I didn’t even think I was hating my body. But it’s like, oh, yeah, no, I do. You know what, and I don’t think it, but like, I ignore it a lot, or I bulldoze past things a lot. And again, I think I was taught that and I’m not trying to, you know, push ownership on any one person.

 I’m just saying I don’t think that I was taught some of these crucial tools that if I had in the beginning, I think that I’d be a little bit more grounded and understanding why that’s so important, versus thinking it’s like being delicate or something. And it’s like, no, it’s like so important, I think. 

Cheryl:  1:03:07

Yeah, I mean, so like, I was literally thinking as you’re saying this, and then you just led me perfectly to it, which is the nature of chronic pain that’s the result of a misfiring in your nervous system. That’s what RSD is. RA is the chronic pain that is from an actual ongoing, ‘real’, quote unquote, disease process. Do you know what I’m saying? 

So, you’re having, you’re having two different kinds of root causes of the pain, and one of them, the appropriate, some of the appropriate tools for like — I’m having brain fog with the phrase — central sensitization, which is the process of where a smaller stimulus evokes a too big response of pain, right, is you do have to bulldoze and push your body to recognize that, oh, actually, that this is, my brain is misfiring right now and that’s not really a threat. Versus the RA, you actually do have to listen to your body. 

So, those are like, two different, like, a patient that just has RA is going to be taught Strategy X and somebody who just has RSD is going to be taught Strategy Y. And you are in the middle here having to do — they’re like opposite, do you know what I’m saying? Like, one of them’s like, “Eat more fruit,” and the other one’s like, “Don’t eat fruit.” Like, these, you have — you’re in one body that has to reconcile these different styles of managing. I mean, I would be extremely confused in your case. So, it’s not, it’s not simple. 

And I think, yeah, I’ve had that same thing, too. And friends are like, “What, you didn’t you already figure this out?” Sorry, going back to what you said earlier, “Didn’t you already — you already figured out pain. You’re already living in pain.” Like, right, but this is a different pain.

Katie:  1:04:58

Yeah. Well, no one’s like, no one’s being unkind, it’s just like, I can just tell it’s confusing. Like, you know, it’s like there’s not enough of a vocabulary to explain the difference that I’m familiar enough with and they’re familiar with. And so, it’s just like, “Yeah, but you were in pain 16 years ago, 18 years ago, five years ago, five minutes ago, like, what do you — what?” Like, uh-huh. Like, and it’s getting worse, but it’s always been getting worse. Like, no, no, it’s new. 

Like, if you don’t, if you don’t know, if you don’t know what living in pain is like, period, like, that’s confusing. So, I, in a lot of respects, I have a lot of grace for that. But it’s hard and it’s tender to walk through going, like, I’m learning how much of a control freak I realize I was by how much I think I shield myself from fear of disappointment, that it’s like, let me just, here’s all the things that you can say. Here’s all the things you can do. Here’s all the things, so that I don’t feel hurt or abandoned in the process? And it’s like, I got none of that. 

And you’re on your own. And like, can you come up with that on your own? I don’t know. Maybe. And some are, and so many are, I think, trying, you know, and it’s like, it’s just like, it’s just no one — like, you know, I said to a really good friend the other day, she’s like, “I don’t know what to do, but I’m not going anywhere.” I’m like, neither do I, you know what I mean? And neither am I, you know, like, you know. And I appreciate it, but it’s like, yeah, I don’t want to lose myself in the process. But right now, it’s like, it’s much easier to talk about you than it is about me, you know? Because if we talk about me, it’s like, I don’t have anything good to say at the moment. And it’s not because — it’s not because there’s nothing else to my life. But at the exact moment, this is the biggest thing going on in my life, you know? And so – and work is like, not always an easy topic to talk about. So, it’s like, if there’s any, if I’m using all of my leftover energy after work on relationships, it’s like, well then, that’s where, like, then there’s nothing else to talk about. Because now I’m talking about you and your — you know what I mean? 

Like, I’ve got nothing else to pull from. And that’s why I mean by clunky. It’s like, I’m just like, learning how to do this and wishing it would be faster, wishing that the whole thing would be faster, you know, to get to a point of feeling like, oh, okay, you know? But I can look back, it’s like, gosh, I’ve learned so much in the last two years that I’m confident that, you know, like, I’ll keep learning, you know, but it’s — and I have a personal point of reference of like, wait, I literally did this before when I was diagnosed with the RSD. And I mean, like, and so, I know, I eventually got to a point where I wasn’t floundering, you know what I mean? But it’s like, I still feel like I’m not cruising, you know. And so.

Cheryl:  1:08:16

Yeah, it’s like, ‘I am a work in progress’ is one of my little self-compassionate mantras I repeat to myself, like, because I feel the same pressure as you are — or not even pressure from the outside, pressure internally to figure things out, to just, you know? And I’ve shared this in the group before, but a lot of times I’m like, oh, my gosh, like, you’re the person who like, quote unquote, ‘wrote the book’ about this or created the course like Rheum to THRIVE. And you tell people every, you know, every month you’re talking about this, why can’t you just frickin’ do it? Like, you can’t do it yourself, you’re telling the people that do it? Like, are you a hypocrite? 

Like, we have all these, like, you know, I like to imagine the inner coach — and I teach this in the Rheum to THRIVE part on coping skills — there’s the inner coach and the inner critic, right? So, the shoulder angels, like the inner shoulder angel who’s like, “Good job, you can do it,” and the inner critic, which is like, “You suck,” you know? 

And the shoulder angel has to just say, like, you’re a work in progress. Like, no, you’re not complete. You’re not perfect, you know, but, like, sorry, just when you say the word ‘floundering’ that really hit with me, because I felt that way many times, too, like, you know, and who wouldn’t be floundering? It’s like, is there someone out there who has a gold star for like, coping the best, you know what I mean? 

Katie:  1:09:37

Yeah, but if I can, if I can encourage you, like that, when you feel that way and you admit it publicly, like you, like, again, free those people with the narrative of like, needing to arrive, right. It’s like, I need someone ahead of me, just like I needed someone ahead of me saying, like, “You can do everything you can and you’re still gonna have these days.” It’s like, I also need someone to be like, “I’ve have been doing this for X amount of years, and I still struggle with X,” like, oh, my gosh. I think, like, it’s freeing, because it’s like, there’s no, “And you have arrived, and now you’ve mastered RA,” like, no, this is life, you know. And so, when people pretend that they have arrived, it’s so off putting to me. Like, I look for people who are real people, like, I hope that you can hold hope, I hope that you can, you know, help, you know, look back and share lessons learned that like, I learned this the hard way, you know, but I also hope that people ahead of me can be like, no, like, yet again, I’m still making this — I’m still forgetting this or I’m still, or whatever, you know, like, thanks for being human. Thanks for showing your humanity, you know?

Cheryl:  1:11:01

That has been one of the most surprising things to me personally about running the groups and being just like a public-ish figure and in the niche of arthritis, right? And I definitely like, if you asked me in 2019, when I first started Arthritis Life, and then 2020, I started the groups and the programs I was like, I need to wait until I figured everything out. And then, I’m going to do it. Like, I’m going to wait till I can write the manual, I’m going to, you know, ‘the manual’ that actually, like you said, has an endpoint that says, “You’re done.” Like, you figured it out. And I was like, people don’t want that (referencing earlier – the idea that you’ve never fully arrived). They don’t want the truth. 

But again, but obviously I didn’t also, I didn’t accept the truth fully, even, until I started really, till I, you know, through lots of therapy and through just doing my own internal work and research and realizing, wait, what if that the false premise is that we have to figure it out? ‘It’ being like perfect symptom control, perfect health, like there’s never been a time in human history, like, anthropologically speaking, historically, that humans have like, it’s been the norm to just totally be healthy all the time. There’s no culture where people are like this. Disease is part of life. It’s just the nature of things, right? Like, people die in childbirth, like, yes, we’ve made advances, but like, we’re nowhere near — like, as long as we still are in a state of imperfect knowledge of the human body, and how to cure illnesses, there are going to, there’s going to be shitty days. There’s going to be people who did all the right treatments. 

And then, you know, I just was reading — I mentioned this on another podcast — but I was reading the memoir ‘Crying in H Mart’ and the girls — spoiler alert if you’re gonna read it. But it says in a bunch of places that her mom dies, and her dad doesn’t at the point I’m reading, and it’s like, her mom took perfect care, her health was really, really active. And, you know, her dad’s like, did a bunch of drugs. And it’s not – the people who do drugs should die. But like, you know, like, logically, you’re like, one person took care of their body and one person didn’t. And then, the one that took care of that body died, the other one didn’t. And like, that’s just how life is. 

And the more we try to run away from that – it’s, again, that what you hold, holds you. Well, it’s threatening to people. And that’s how it relates to the social, social life, family and friends. People don’t want — they think, it’s such a cognitive dissonance to have to face the fact that there’s so much randomness in health, that people would rather say, “No, Katie’s just not doing it right. Like, there must be something more. Like, there must be something she could be doing,” like other rather than saying, shit, like this could happen to anyone. Like, Katie is trying her best and going to the best doctors and has a great team. And they are at a point where this is the best they can do.

Katie:  1:13:43

And what I wish, like, Cheryl, like for myself, and I’m truly not trying to be hard on myself, but like, I wish that I could embrace that and believe that personally, too. Like, that gentle, like that, like, “I am doing everything I can,” like, the doctors, like I trust these doctors, this is like if I could just pour gentleness over myself and hold it and believe it and keep it, I would. 

Because sometimes I think that my mind is just very clever in how it plays tricks on me still to believe that like, okay, I’m gonna posture myself and present myself this way. But in my brain, I’m going, I’m not relaxing into that and being gentle. And I’m not trying to be hard on myself. I’m just saying it’s like, that perspective of like, you know, letting people see your humanity and also be like, “Whoa, like, that could be me, or that could be that,” you know what I mean? This is like, and look at that. Like, I never assumed that’s what people think when they see me and what’s so hypocritical is probably what I would think if I was looking at someone who is suffering. But like for me, it’s like, oh, surely, it’s like, it’s that like, “Oh, I guess I haven’t learned that yet. I’m still working on that,” like, I’m still working to just —

Cheryl:  1:15:16

Yeah. So, are you saying you’re more — are you saying you’re more gentle with others than yourself? 

Katie:  1:15:21

Oh!

Cheryl:  1:15:22

Okay, yeah. Sorry. Just to be sure.

Katie:  1:15:22

Yes, yes. Goodness, yes. And I’m just saying that like, if I have bought in to the fact that I want gentle for myself, I want to be gentle towards myself, what I’m saying is, I have yet to figure out how to have gentleness up close, and keep it. I’m like, okay, like, you know what I mean? It’s just like, it’s very, like, I can keep it for a second. But it’s not natural for me, you know what I mean? So, like, I want that for myself, though. Like, I want to — it sounds very, it sounds more freeing than the way I’m living right now. But it’s easier said than done.

Cheryl:  1:16:06

Yeah. Acknowledging that is the first step though, even acknowledging that gentleness can be a good thing, right? We’re raised with all these toxic messages, “Just push through, be a warrior, fight against it,” you know, as opposed to, yeah.

 I think I don’t really talk about self-compassion as a true practice as much as I should, because — that’s me being hard on myself. But I really want to draw attention to Dr. Kristin Neff’s work because that is, you know, that along with Acceptance and Commitment Therapy, which I talked about like every five seconds on this podcast, the self-compassion work, by Dr. Kristin Neff, has really helped me give permission to — or just validated to me the importance of being gentle with myself. 

And being raised by, you know, Mr. Rogers. No, but that’s what I watched while I was growing up. “I am special, you are special,” you know, that was in the 1980’s generation of like, “You’re special. Everyone gets a trophy.” I’m like, some of that’s good! Sometimes it’s like, yeah, like, I mean, I’m an athlete. So, I’m also like, you know, like, you want to, like, first place means something, second place means something. On the other hand, but also, like, participating means something. Participating trophies are great, because it means you fucking got out there. And you tried, you know? And that’s amazing. 

And you, you know, and so, anyway, sorry. Well, side note, but Dr. Kristin, for anyone listening who struggles with self-compassion, she literally defines self-compassion as — I’m on her website right now, sorry, with, you know, me from the group’s, I always have the tabs open. With self-compassion, we give ourselves the same kindness and care we would give to a good friend. And I find it way easier to be gentle and compassionate to others than myself, too. That’s why I was, I just wanted to make sure I was understanding what you’re saying, because that’s totally — and that’s actually why the power of groups, right, the group dynamics are such that we all, I think, most people unless they’re maybe, I don’t know, a lot of people have an easier time. I’m not even going to speculate. A lot of people with chronic illnesses in the online communities, you know, that I’ve been part of, find it easier. It’s like, whoa, wait a minute, like, I can point out that you’re being too hard on yourself. And then, you can point out that I’m being too hard on myself. 

And then, you know, yeah, the other week, oh, my God, I was on the phone back-and-forth and back-and-forth with Walgreens. And I was like, when am I gonna learn? Like, you know, not giving myself any credit for the many times that I did manage my medications, you know, quote, unquote, ‘correctly’ and on time. Yeah. I messed up. I didn’t get the refill, I ignored all the reminders about the refill, and then my doctor moved, and then I had the blah, blah, blah. I knew, I should have known. It’s like the Taylor Swift in Dear John, “I should have known,” you know? Like, I should have known. Okay, well, yeah, you should have known, but like, am I gonna go to my grave berating myself the rest of my life? I don’t think, I hope I hope not. But anyway, sorry. But what was the thing I was gonna ask? Oh, you’ve mentioned your professional life a couple of times, just because I’m thinking people might be curious, what kind of work do you do, if you don’t mind sharing?

Katie:  1:19:01

No, that’s fine. I don’t even know if you know this? I am a children’s pastor.

Cheryl:  1:19:07

Oh, my gosh. Well, this is why I was saying, I don’t know if I had known that because my memory is very porous.

Katie:  1:19:13

No, I doubt, I doubt you did is what I’m saying is. I don’t know that I’ve ever shared it.

Cheryl:  1:19:18

That’s amazing. That’s, that is — I mean, so I’m sure you have compassion in the world for the children. It’s like treat yourself like the child, right? 

Katie:  1:19:27

Yeah, you know what, like, I work with children, but I actually work mostly with adults. And I am passionate about people who — walking people through crises. So, I’m usually like, you know, I, you know, spend a lot of time in children’s hospitals with families, and also am contracted into a grief center for children and families who have experienced the death of a loved one. 

And so, I’m passionate about helping to hold space for people in the middle of their hardest moments, which is one of the reasons why I got into the line of work that I did. But it’s a lot of adults, too, you know what I mean? It’s kids, but it’s a lot of adults, you know? But embracing some of those big feelings is something that I teach, you know?

Like, so to do it, you know, personally, is like, that’s why it’s always in the forefront of my mind, because it’s like a personal conviction in a way of like, you know, I want to model that as well. But it is hard. And it’s part of why it’s clunky, is that like, in order to continue to showing up for people, it means that I’m not going to go hide in the closet until it’s all, you know, like, in a better spot and come out. It’s like, no, I’m going to show up today. And you might be getting a really bizarre version of myself today. And I wish you didn’t have to see it, you know, but this is where I’m at today. And I’m still learning to be okay with that, you know what I mean? Like, people are gracious of me, I’m still learning to be okay with that. Because two and a half years ago, it was different, you know?

Cheryl:  1:21:14

Oh, man. The old, yeah, comparing your current self to your older, previous self is a very dangerous comparison game to make. But, you know, I think I’m gonna just, I don’t know if this is the case, you’ve never said anything like this. But I know of people who’ve worked in like high, what we call high acuity settings, high emotional acuity settings, like the emergency room, or in your case, you know, children and adults in grief. A lot of times, if they get diagnosed with a chronic illness, they will say, “Well, why am I this upset? It’s not like (blank). It’s not like my mom died. It’s not like someone died.” 

It’s, I don’t know if you’ve ever played that Comparison Olympics, but just for anyone listening. Okay, so you’re saying no, for those listening, that’s good. But, and so I just, I just want to acknowledge that I really, really encourage people, you know, not to play the Suffering Olympics.

Katie:  1:22:08

I actually will spin that around and say, what I actually hear more is when people know, and I don’t share, I am careful about where I share and what I share pain wise, with my professional life because of what I do, but it’s actually more common that people go, “I don’t want to share this, because it’s not like I’m suffering every day.” It’s like, whoa, whoa, whoa, like, that, to me, is like, let’s stop that immediately. 

Because there’s no, like, comparing in general is just ugly. Like, let’s just not. Let’s just stop, you know what I mean? So, like even if we both have the exact same lineup of diagnoses, I’m not gonna, like, I can say that I understand daily suffering, but I’m not going to try to pretend that I know what your body feels like, like, you know, like, that’s — so, I would encourage anybody listening to have the same mindset of like, no, no, no. It’s not a, “Well, it could be worse,” like, stop it. Like, stop it. That never helps anyone feel better in my experience, I’ve never had anyone go, “Good point.” Like, no, like, it’s not helpful. It might, it might feel true, but it’s not helpful. Let what you’re going through, you know, validate that that is a lot. And any amount of pain or suffering, no matter what kind it is, is too much. It’s too much, you know, and it doesn’t really matter if the person to the left or right of you seems to be going through something harder, or easier, any of that, it doesn’t really matter. 

Cheryl:  1:23:57

No, it doesn’t.

Katie:  1:23:58

You know?

Cheryl:  1:24:00

I know. That took me a long time because that, I mean, that was the reason — I’ve spoken about this, but probably not for a while — that I didn’t go to therapy for a long time, because I was like, “Well, other people have it worse,” like, and it’s true to acknowledge that I have had a very, I’ve had a, I would say, emotional privilege, if that even makes sense. But it kind of does, right, with what we know about how trauma affects the developing brain. I had a very, very happy childhood, no trauma to speak of. Safe, a hundred percent sure of my safety at all times, except for the seventh-grade unit on earthquakes, which was like, the big earthquake is coming to Seattle soon. And I was hyperfixated on that. And my therapist was like, that could have been an early sign of your anxiety disorder. 

But anyway, normally, in my everyday childhood, especially the birth to five, really important years, I had really, really solid, solid attachment, solid relationships, and I just thought, well, I just have this one thing wrong in my life, which is my health, but like everything else is good. So, like why should I go to therapy? Other people have it’s so much worse. And it’s like, that’s the worst way of thinking, right. 

And on the one hand, it’s like, I will be the first to admit when my therapist, the first one, Amber, who I went to for a number of years after Charlie was born, I finally, that’s when I finally did it, when Charlie was born. Because there’s so much awareness about postpartum depression, postpartum anxiety that I was like, okay, well, it wasn’t like, I wasn’t, it wasn’t bad enough that it had RA. But it’s bad enough because now that I’m feeling postpartum, like, weirdness, I didn’t really like to call it depression, because it didn’t feel like what my conception of depression was at the time, which was like sadness. I wasn’t sad. I was just irritable and angry and anxious all the time. And so, I went to therapy. 

And when she validated how much I had gone through with my health, on the one hand, I needed that external validation, on the other hand, I, through time, have learned that I don’t even actually, I don’t need it anymore. Do you know I’m saying? You need it initially to get you over that hump that, okay, I mean, the first time she was like, “That’s a lot,” I was like, oh, my God, this trained third party person said, “That’s a lot.” That was like a pivoting point in my life where I was like, finally let myself believe it was a lot, you know? I forgot what the original point of this was. Oh, yeah. That a lot of people say, “Oh, well, yeah. It’s not like X happened. It’s not like Y,” yeah. It always could be worse. It always could be worse. You’re alive. You know, it always could be worse. You could be to being tortured right now. But does that mean that you’re only supposed to be happy every second?

Katie:  1:26:30

I just don’t believe that that helps literally anyone in this scenario. It doesn’t help the person; it doesn’t help the person who experienced whatever you’re saying would be worse. And it doesn’t help you. Like, I have not, I’ve not had an experience where someone is finding anything but guilt that than they were feeling upset in the first place, do you know what I mean? Like, it’s like, no, no, no. This is not helpful, you know. Like, I’m not trying to say it’s bad. I’m not trying to make a blanket statement. But it’s just like, in my experience, that doesn’t, that does not help. It doesn’t help a person who’s suffering differently feel — like, thanks for acknowledging that. And that made me feel better. I mean, I don’t want you to mean like, you know, it’s like, suffering is hard and deserve space to be heard, you know, and held by others, no matter what, no matter what it is, and no matter how much it is, and no matter whether the person to your left or right is seemingly holding more or less than you. It deserves, it deserves to be spoken.

Cheryl:  1:27:40

I really liked — there’s something that John Green wrote, which is, “Pain deserves to be felt.” Have you ever heard that? And or sorry, sorry, “Pain demands to be felt.” Yeah, sorry, not deserves. I was like, it’s a D-word. And yeah, that’s what it is. I want to ask you one more question before we go to the rapid-fire, just to be mindful. I found out that my son’s last day of school today, I knew it was a half day, but normally half days end a little later. It’s like a super half day. It’s a two-hour day. So, I’m like, okay. I know, but and you graciously let me know that you had a little extra time.

 But, like, I am curious, you know, overall, I think coping with chronic pain, whether it’s a chronic disease that’s like an active inflammation disease, like RA, or whether it’s from, you know, complex regional pain or RSD, is just a lot to cope with. Like, are there any other tools that have helped, or strategies or frameworks that have helped you, you know, that we haven’t talked about so far? I’m literally just curious.

Katie:  1:28:52

With coping?

Cheryl:  1:28:55

Just with, yeah, with the coping with the emotion. Like, I don’t know, I get, when I’ve had more severe pain, I get claustrophobic or cleithrophobic, like, I feel trapped in my body. And that’s such an uncomfortable, I don’t know if there’s anything — like, and I had done like breathing exercises, just as an example, because there’s something that we didn’t talk about, but. I just opened a huge can of worms at the very end. 

Katie:  1:29:14

Yeah, no, no, no, it’s okay. I’m big into therapy. So, therapy is big for me. I learned different breathing strategies that I thought were bogus when I was taught them and now rely on them daily. I also felt the same way about any sort of meditation. I thought it was bogus. Now, big, big fan, use that regularly. 

I think that in the beginning, I was so, like, nothing will work. And it’s like, just like, give it a second. Like, give it a chance to just help calm myself down. I am learning right now when to distract and when to pay attention, like, that’s still brand new for me. But when distractions are needed, you know, a lot of times that’s music, or TV, or books. But sometimes I don’t need, like, sometimes I don’t want distraction, you know, sometimes I just want to just feel calmer. So, different types of music sometimes.

 And my faith is a big part of my, you know, life. So, that’s something that would be coping for me as well. And then, I think that, like, just the social of knowing that sometimes I need to just talk to somebody who understands chronic pain. So, like, I have one RSD friend who I’m really grateful for. And, you know, anytime I need to just vent to someone who is going to get it, it’s there, you know, or the Rheum to THRIVE graduate group would be the same for the RA, you know, of just like, okay, like, knowing that sometimes I just need someone to hear it, to hold it, and to be like, yeah, like, that sucks. And, you know, like, that’s it, you know, and that’s okay. And again, I can’t — I know, it’s rare. And so, I never want to take it for granted. But I am very grateful for my medical team, you know, I really get a lot of support from them.

Cheryl:  1:31:34

No, no, that’s, I think that’s so helpful for people to hear. Because we do, unfortunately, or fortunately, there’s just a lot of people that don’t feel adequately heard or supported by their medical team. So, it’s really important to give voice to the positive stories like yours. 

Katie:  1:31:47

Yes, it is not — it did not start there. It took a while to get there. I say the same thing about counselling, like, just don’t give up on assuming that it can’t get better. Like, no, like, there’s a better fit for, you know what I mean. And what’s a good fit for someone’s not gonna be a good fit for everyone, you know, and so I am really grateful that I didn’t settle and that I’m with the people that I’m with now.

Cheryl:  1:32:09

Yeah, yeah, absolutely. Yeah. And I hope everyone takes up those words to heart because it can be, there is an inertia that I feel when getting a second opinion. I’m just like, like you’re talking about, I don’t want to add one more person, and I don’t want to have to explain everything again. It was so funny. I just went to a cardiologist for the first time a couple of weeks ago, and — sorry, then I’m gonna go to the rapid-fire questions. He was fine.

 But it was like the first time he came in the room and was like, “So, what brings you here today?” And like, I was a little, for some reason, I was taken aback by that, right. It’s the way he asked, it was very broad, like, what’s bothering you or something like that? And I was like, I didn’t want to be rude. But I was like, well, I’ve literally filled out all this extensive paperwork, and I’ve just told the medical assistant, like, right? So I’m like, I want to make the best use of my time and his time. So, I just kind of said, like, “What have you read about me, or do you know —?” like, I tried to say it in a nice way, like, I don’t want to put pressure on him to be like, did you just like walk in here without looking at my chart, even though I kind of suspected that you probably did, which – because most specialists don’t have embedded time in their schedules to look at people’s charts and everything. 

And he, to his credit, he just without missing a beat, he’s like, “I haven’t looked at anything.” He was like, “Yeah, just start from the beginning.” And so, I’m like, okay. I have rheumatoid arthritis, blah, blah, blah. I know, it’s like, it’s fine. I mean, that’s — it is what it is. But the point being, oh, my God, what is the point? Sorry, my brain is going in so many directions. The point of — I don’t know what the point was. [Laughs] 

Katie:  1:33:47

I think that, like, too, like — yeah, I’ve had doctors be like, “How’s your pain? What pain? Which pain?”

Cheryl:  1:33:57

Where? How long? What kind?

Katie:  1:34:00

What do you — would you be more specific? And it’s like, they don’t care about that, like, they just care about —

Cheryl:  1:34:07

Like, I need to fill out my chart. Yeah. That’s, yeah. No, I’m not bashing the doctor at all. Again, I think that I was actually that he was honest, and just said like —

Katie:  1:34:16

Yes, yes. 

Cheryl:  1:34:17

And I actually heard him, he was interviewing someone for a job. I could hear him in the room before when the medical assistant — so, I kind of guesstimated that he hadn’t, he hadn’t read anything. And he was great. He listened really well and got me on on a plan. 

So, but for some reason, I felt compelled to share that. But I just wrote ‘supportive medical team’ in my notes and then decided to share that story. Okay. So, for the rapid-fire questions, which we could talk about for hours, but do you have any words of — you’ve already shared so many words of wisdom, but for particularly for newly diagnosed patients. What would you say to them?

Katie:  1:34:55

Mm-hmm. I would say that, first of all, I am so sorry. And I would say that it is too much to hold this all by yourself. And so, whoever your safe people are or finding a safe community, you know, and trying, you know, don’t try to do this as an island. And to steal — which I just, I’m a big Kate Bowler fan, and Kate Bowler said, you know, I don’t know if she originated this or not, but her big thing is like, “You are not the bad thing.” And I love that so much. You are not the bad thing, you know. There is, this is a bad thing. You are not it. And I think sometimes when it feels closely attached to you, it feels very confusing to not try to think, “Maybe I am that that thing because look at what this is doing to the people I love and to me,” but it’s not you. You are not the bad thing.

Cheryl:  1:35:55

I love that. I just finished her book, which I forgot the title of which I will put in the chat — ah, ‘No Cure for Being Human’. No Cure for Being Human. And it was so good. Yeah, she’s, she’s a treasure and she does a lot of those, she has a lot of real, like, truth bombs, but still hope. Do you have — this is totally on a different topic — do you have a favorite arthritis gadget?

Katie:  1:36:19

Okay, so this is not specific arthritis, but it has helped my arthritis. One is those slip-on sneakers, the Kizik’s? Game changer for me, love them. Also, hand massager things, like they big thing for me. And this is really random because this is not even a tool, but this is a strategy, is washing my hair is really, really hard for me. So, I get my hair blown out once a week and it has been such a good life choice for me. It is an investment but it has saved me so much energy. And I do emails while someone else washes and dries my hair. It’s like my best life hack.

Cheryl:  1:37:04

That is amazing. I’ve never thought of that. And doing your hair is very, can be very painful.

Katie:  1:37:10

Yes. Yes. And so, I plan it around like my busiest work day or meetings or whatever. And I get my hair blown out. And I literally spend that whole time working at the same time. So, it’s my best life hack.

Cheryl:  1:37:24

Oh, my God. Okay, we need to share a video on this. This is amazing. Do you have a favorite book, movie, or show you’ve been loving recently?

Katie:  1:37:33

Yeah, like, I love Abbott Elementary. And that’s been like, I just keep rewatching the same three seasons.

Cheryl:  1:37:41

Oh, when we were in, we went to Disneyland and Universal Studios in February. I got to see the set, the actual set. 

Katie:  1:37:51

Oh, fun. 

Cheryl:  1:37:52

It was so cool. Yeah, yeah. They weren’t filming at the time. Do you have a favorite mantra or inspirational saying?

Katie:  1:38:01

Hmm. You’ve heard me say multiple times, “I’m doing my best.” I’m doing my best. Borrowing Kate Bowler’s, “You are not the bad thing.” And then, also trying to say ‘and’ instead of ‘but’ when I’m making comments about how I’m feeling, and recognizing how much I usually, I’m like, “This is hard, but,” and it’s like, no, this is hard, and I’m grateful for whatever, or whatever the situation might be. But trying to say ‘and’ more and holding both at the same time.

Cheryl:  1:38:33

That, you know what, literally, I have to say this. Do you listen to ‘Dear Hank and John’, the podcast with John Green and Hank Green? 

Katie:  1:38:42

No, no. 

Cheryl:  1:38:43

So, these are, they are two brothers. And they — sorry, I was about to go into their spiel. But they are both writers. And they are the Vlogbrothers. So, they have like, millions of followers on YouTube. And so, they’re one of the first YouTubers, and they’re both the nicest, most grounded people. They’re, I think, about in their 40’s. And Hank just got diagnosed with lymphoma.

 And so, and they were talking about it on the podcast, and John was saying the exact thing you were just saying about like, he keeps wanting to be — or Hank was saying the same thing. He keep wanted to, like, “Well, but I have cancer, but it’s one of the most treatable cancers, but,” and they even, they acknowledged that. And they were like, I’m trying to not do that. And then, like, later on the podcast, John started the sentence and he’s like, I really want to say ‘but’, like, I really, it’s so hard.

Katie:  1:39:28

I’ve had to like, my friends now know, like, I will pause the hard sentence thing and let it sit there. And I’ll say, “And,” this, you know, whatever, like, you know, and to try to not gloss over it. You know, it’s like a good discipline practice for me now, so.

Cheryl:  1:39:49

Oh, it’s perfect. Yeah. And what is something that’s bringing you joy right now, other than Abbott Elementary?

Katie:  1:39:54

Oh, my gosh, no, always, answer is always these days, my nieces and nephew. I am obsessed with those little people in my life. They are the best little joy bringers.

Cheryl:  1:40:05

Being an aunt is the best job.

Katie:  1:40:07

The best. 

Cheryl:  1:40:08

It is, though. I got to — my niece is, that live in New York, are about to come next week. I can’t wait to spoil them. My other niece and nephew who live in DC are coming in August. So, yeah, love it. And last one, what does it mean to you to live a good life and thrive with rheumatic disease/migraines/RSD?

Katie:  1:40:29

Is using that ‘And’ as like a life grounded thing, you know. Like, this is hard. And I want to laugh. And I want to make memories that I can look back and say, yep, I was in pain. And I showed up. I lived. I was there, you know. And so, like, embracing that, and not putting life on hold with the illusion of when I’m in a better spot, then I’ll go live, you know, but this is a really hard — this is a hard season, and I want to show up to it and experience life.

Cheryl:  1:41:09

I’m having a moment of, like, where you know that famous, it depends on what the meaning of is, is? I don’t know if you’re old enough to get that reference. It’s from a famous trial in the 90’s of a president. But I’m like, it depends on what the meaning of ‘and’ is. Like, and it’s true, like what you said, the importance of ‘and’, it’s so deep. 

Like, it’s not just, it’s not just the word ‘and’, it’s like the mental framework of resisting the urge to put a spin on it, to say, “This is hard, but I’ll figure it out soon,” or something, but to say, “This is hard, and I’m facing it.” And with this, it’s like you have this big, like, some people refer to having chronic illnesses like a big, like a backpack with a bowling ball in it or something you’re carrying. You’re not saying, “And I’m gonna take the backpack off soon, and they’re gonna figure out how to cut this, you know, straps off,” like, no, this is hard, and I will carry this, you know.

Katie:  1:42:10

My childhood best friend like freed me the other day, because we were talking about a situation with another friend who’s not really accepting where my health is at the moment. And I was sharing that, like, I think they probably just didn’t understand like, because they saw me in this really great light. You know, they saw me doing this, they probably thought, “Oh, if she can do this, she can do that.” 

And my friend said, “If that’s true, that’s super upsetting,” she said, “Because we’re people who knew you before pain ever entered into your life.” And she said, “When I look at you, even when it seems like you’re having your best day, I can see that you’re in pain.” And I like wept because, like, I see it in my photos, I see it. But the fact that this childhood best friend who knew me before, like, because I see it all the time. Like, you could be doing better, have a better day, and I see it like. And they should have been able to teach you. But in that it’s like, okay, like, it freed me. 

And it also was like, great, that I’m going to keep getting my photo taken in these memories and in these moments, and I’m going to still be able to see it, that I’m in pain. And I’m going to remember that I was in pain. And I want to be in the photo, like, because I want to be at the memory moment. I want to not miss things because of the pain. And sometimes, I do. I’m currently on vacation right now, like, I mean like there’s things. But what I’m saying is, is that it’s like, I don’t want to not show up, you know what I mean? Like, I want, that’s what I mean by that, you know what I mean? Like, I want to live, even if it’s like, okay, it’s really, really, like, we’re dragging to get there. You know, I still, I still want to show up. 

Cheryl:  1:43:57

Yeah, that’s beautiful. Showing up in a clunky way is a perfectly imperfect — 

Katie:  1:43:04

At least, at least in this season. That’s where we are. So. 

Cheryl:  1:43:07

Yeah, no, I’m saying I want to, there’s a saying by Glennon Doyle Melton, like, “Write from your scars, not your wounds,” like saying like, in that sense, she was saying wait until you’ve kind of processed the pain to write about it. But it’s like, well, if you’re, if your shitty situation is like ongoing, you have to write from your wounds. Like, you have to just say like, yeah, this is, I’m not sure what’s going on right now. It’s not a neat and tidy little package and it’s messy. Again, as Taylor Swift said, it’s messy and it’s magical. We’re happy, free, confused, and lonely, and at the same time.

Katie:  1:43:43

Same time. Yep. 

Cheryl:  1:43:44

I relate, too. You’re talking about being 22? I’m 41, I’m almost 42, I’m still feeling that way. It’s miserable and magical. Oh, yeah. Sorry, you guys are gonna be sick of hearing about Taylor Swift, because the concert’s in exactly four weeks for me and I am ramping up the excitement.

Katie:  1:45:01

It’s a big deal. You gotta prep.

Cheryl:  1:45:05

Yeah, my husband’s being coached a lot. And I’m also coaching myself, like something could happen, you could get really sick and you could not miss it. Anyway. So, that’s me, but I’m gonna put your links in the show notes for your Facebook. And so, people can follow you. Anything else you want to say? Or are we ready to conclude? That was a little long.

Katie:  1:45:28

I’m really, really grateful that you didn’t have to get Charlie.

Cheryl:  1:45:32

I didn’t have to get my son.

Katie:  1:45:34

No, I’m grateful to have been able to share. Thanks for having me.

Cheryl:  1:45:38

No, and thank you. And I had forgotten that that’s how you learned about this work that I’m doing through the podcast. I love that. It’s like a full circle moment. And, you know, thank you for showing up when I know it’s hard to show up when you don’t, when you want to have a, quote unquote, like a ‘tidier’ story. But this is reality and this is what people need, you know, these are the stories people need to hear. So, thank you again. 

Katie:  1:46:03

Yeah, thanks, Cheryl.

Cheryl:  1:46:05

Okay, bye-bye for now.