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whats it like to run half marath
Patient Stories, Podcast

What’s it like to run Half Marathons with Autoimmune Disease? Episode 126, Arthritis Life Podcast

6 months ago
79 min read
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Video of conversation:

Summary:

Gretchen Schoenstein shares how she pursued her dream of running half marathons despite an autoimmune diagnosis of sarcoidosis. After facing skepticism from some medical professionals who doubted her ability to run, Gretchen defied expectations and has completed over 100 half marathons, all while raising money and awareness for autoimmune causes. 

She and Cheryl also discuss the importance of self compassion in their journeys with chronic autoimmune disease. Gretchen shares why she resonates with progress over perfection and encourages others to be gentle with themselves while navigating life with autoimmune diseases. She also shares tips for how to manage exercise with sarcoidosis.

Gretchen shares how she found creative ways to raise awareness about autoimmune diseases, such as running two half-marathons on two coasts in two days to raise funds for autoimmune research at the Benaroya Research Institute. Through her experiences, Gretchen emphasizes the importance of perseverance, self-advocacy, and building a supportive community.  By sharing her story and promoting resilience, Gretchen aims to inspire hope and empower individuals to find purpose and joy in their own health journeys. 

Episode at a glance:

  • Diagnosis Story: Gretchen shares insights into her health journey with hashimoto’s disease and sarcoidosis, such as the importance of advocating for oneself when navigating medical challenges and treatment options.
  • Coping Toolbox: Gretchen explains how she incorporates physical activity, mental wellness, and emotional resilience into her lifestyle.
  • Community and Support: The significance of building a supportive community is highlighted, including finding strength in connections with others facing similar challenges.
  • Mindset and Self-Compassion: Gretchen emphasizes the role of mindset training and self-compassion in managing autoimmune diseases and pursuing personal goals. She encourages focusing on progress rather than perfection, and celebrating small victories along the way.
  • Advocacy and Awareness: Gretchen shares how she raises awareness about autoimmune diseases and promotes understanding within society. Through her running journey, she has challenged stereotypes and demonstrates that individuals with autoimmune diseases can lead active and fulfilling lives.
  • Words of wisdom for newly diagnosed patients: One step at a time, have grace for yourself, advocate, and build a team.

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:

Gretchen Schoenstein has run 122 half-marathons and counting, despite being told by doctors that she would never run again over a decade ago. Her most recent race finishes were at the 2024 Rock ‘n’ Roll Running Series in Washington, D.C., and the 2024 Shamrock Run in Portland, Oregon. Gretchen lives with several autoimmune diseases, including sarcoidosis and Hashimoto’s disease. She also has her own business Finish Line Moments.

More about Gretchen’s story can be found on her JustGiving page.

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.

Full Episode Transcript:

Cheryl:  00:05

I’m so excited today to have Gretchen Schoenstein on to talk about what it’s like to run half marathons living with multiple autoimmune conditions. Thank you so much for being on The Arthritis Life Podcast.

Gretchen:  00:18

I’m super excited to be here, Cheryl. Thank you so much.

Cheryl:  00:22

Yeah, just to get started, can you share, you know, where do you live? And what is your relationship to joint pain, let’s say, and/or autoimmune disease?

Gretchen:  00:31

Absolutely. So, I live in Sonoma, California. Sonoma’s a little town that makes wine north of San Francisco. And my autoimmune journey started when I was a kid. So, as a lot of us know, there’s now over 100 identified immune diseases and disorders. And one of the ones that I had when I was a kid, I can’t pronounce it, it has to do with the esophagus. And it was, it’s interesting. Looking back now, I would I got the experience of how difficult the journey is to get a diagnosis, even at that young age. In terms of joint, being aware of my joints, that actually started only a few years later as a teenager. And then, in particular, when I was diagnosed with sarc — eventually got diagnosed with sarcoidosis, which affects the joints and in my case, it affects the lungs, and also my case, it affected the joints. And I was, it’s pretty severe, but now it’s my — now it’s my way to be aware of what’s going on in my body when I start to feel a little bit of that inflammation and like, okay, now it’s time for me to pay attention and take care of myself.

Cheryl:  01:45

Yeah, that’s, that is definitely a lesson that chronic illness teaches us, listening to our bodies. And I wanted to ask, what age were you at when you got the official sarcoidosis diagnosis?

Gretchen:  01:58

It was about 15 years ago. And yeah, it was — I was, it came on very suddenly from that standpoint. I also have Hashimoto’s. So, I’ve been dealing with autoimmune diseases since I was a kid. And 12 was the age I was when I got diagnosed with Hashimoto’s. That’s a very early timeframe for that. And I will say that I got very lucky with the doctors because it was — a lot of people in the autoimmune world know this journey of you see a bunch of different doctors, you get a bunch of different tests, you get a bunch of different opinions. And there’s a whole lot of, “We don’t know what’s wrong with her, we’re not quite sure.” You know, meanwhile, and I’m 12 years old, I’m trying to just, like, live, or in my case, sleep, which is what was happening at the time. And then, finally, it was a doctor who said, “I gotta think outside the box.”

And I think that’s one of the things with autoimmunity is you get conditioned to learn how to think outside the box. And I’ve embraced that. That’s why we’re talking today, right? Because I’ve been doing some bold things to try to do that. And it’s almost like bold is my comfort zone. Because of, you know, of having to be more innovative and proactive with how to approach my health. And so, it was this one doctor who said, “I think it might be something else.” And that’s when the blood work, came back and said, oh, yeah, you got Hashimoto. So, I’m, you know, I’m, I’m super open about my health and getting more open about it, because I want to make a difference. 

And, you know, I’ve been on Synthroid since I was 12, and you can’t get off it now, right. And it’s something that I feel they would probably do it different now. But that’s what they did then. And so, you know, there was a lot of ‘fake it till you make it’ as I was growing up through all of that and dealing with all of tiredness. And then, you know, all those years later, I get hit with sarcoidosis. And that was, that was an incredibly long, incredibly painful diagnosis journey. Absolutely.

Cheryl:  04:06

The sarcoidosis. And just for those who don’t know what Hashimoto’s is, it’s an autoimmune disease that affects your thyroid, right?

Gretchen:  04:13

Yes. Yes, absolutely. 

Cheryl:  04: 15

Double checking. 

Gretchen:  04:16

Yes, I like to get the autoimmune diseases that have really long, hard to pronounce names. Keeps it more interesting.

Cheryl:  04:23

Well, I was thinking, I was thinking it’s also — you mentioned the esophagus. I was like, I bet it’s that one that’s like eosinophilic esophagitis.

Gretchen:  04:30

Something like that. Yeah.

Cheryl:  04:32

Eosinophilic esophagitis, yeah. All right. That’s a lot. That is a lot. So, you’ve already kind of from age 12 learned how to navigate chronic illness to some degree. But then, what were the are symptoms of, you know — you’re the first person I should say, that I can remember, so apologies if I’m having brain fog — but you’re the first person I remember that it has had sarcoidosis that I’ve had on the podcast, and I’m really glad because this is, it’s more rare than rheumatoid arthritis, psoriatic, and ankylosing spondylitis. So, it’s not, one, it’s not the first thing that comes to people’s mind. But that’s why it’s so important to have awareness about it because you might be the person who they ‘don’t know’, quote unquote, what it is. And it actually is sarcoidosis. So, what are the what were your symptoms?

Gretchen:  05:18

Initially, it started out. I had joint pain, like, severe joint pain, bilateral. And I had been travelling with my partner at the time. And when I went to one doctor, he initially said, “Oh, you were on a plane for a long time. So, I’m sure it’s just that.” Then I went to another doctor who said, “You have carpal tunnel syndrome.” I’m like, in my legs? And in both arms? Not quite sure about that. 

Cheryl:  05:49

There’s not — only carpal tunnel in the body is in the wrist, just for the record. 

Gretchen:  05:53

Thank you for the clarification. That’s what I thought.

Cheryl:  05:55

Yeah, I’m an occupational therapist, so. 

Gretchen:  05:57

Right, right. So —

Cheryl:  05:59

Unless I forgot something from school. 

Gretchen:  06:00

Yeah. And I, you know, I mean, they gave me a bunch of pain meds. And that sort of helped, but not really, because that’s not what was happening in body. And so, then I went, then it became so severe my, basically, the way I always explained it is like my lungs blew up, and my joints blew up from head to toe, and not blew up, like in a violent — well, it was actually quite violent, it was incredibly painful. I often use the phrase that there was this, it was almost an exquisite pain. And I had people push back on that, and they’re like, exquisite is this meaning. I was like, well, it’s very specific pain; it was so intense. And it’s this, it takes your breath away. 

And I couldn’t walk for about six weeks. And every day, my joints would get more inflamed, more swollen, more red, more black and blue. And I had such a hard time breathing, I still have sometimes a habit where I’ll put my hand on my chest when I’m talking. And it’s just the habit from that timeframe of like, I’m not able to get a full breath. And so, multiple trips to ER’s and hospitals and being told, “We don’t know what it is, and we’re still going to send you home.” And then, three days later, it would be even worse. And I go back to the ER. And one time they actually sent me home with crutches. Which is odd because I couldn’t use my arms. So, not quite sure what I’m going to do with the crutches. 

Cheryl:  07:28

That’s not patient centered care, sorry. As an occupational therapist.

Gretchen:  07:31

No, no.

Cheryl:  07:32

No.

Gretchen:  07:33

I mean, and I the reason I’m sharing this part of the story is because I know how many people have gone through something similar, right? It’s this frustration of not feeling heard, not feeling seen. And then, feeling very alone and frustrated from that. It’s like, I have joint pain, like, in my arms, too. So, how am I supposed to hold the crutches, right? Went back home, crutches stayed in the hallway, laid on the bed again? And then, finally went into the ER, I don’t remember how many times three or four times and they said, “Well, we can get you into a rheumatologist next week.” And at that point, it was like, I don’t know how I’m supposed to live like this for another week. It was that painful. It was that violent. It was that scary. A lot of fear, just a ridiculous amount of fear. And I got into it was a few days later, and I finally got into a rheumatologist. I was in a wheelchair at this point and got into the rheumatologist. And he took one look at me. And he said, “If they had let me see you last week, I would have admitted you to the ER immediately.” 

So, suddenly, there’s that hope. And again, a lot of patients understand this where suddenly, there’s hope. You’re like, oh, somebody gets it. Okay, now I’m going to you know, hang on to this person, because maybe they can get me some help. So, I got into the ER, and then all of a sudden then it’s all the tests right now. They’re like worried about my heart, worried about all these other things. And it starts, the fear starts to rise up, right? It’s a lot, it’s a little bit scarier at that point. Call family and you all need to get here, that kind of thing. And I spent the next eight days in the hospital. And I saw — I have a light humor about this at this point. It’s been long enough, right? And you got to have a little gallows humor to get through some of this stuff. And I’m like, I saw all the -ologies, right. I saw cardiology and dermatology and rheumatology and neurology. I know there’s like eight new —

Cheryl:  09:29

Probably physiatrist, it’s physical medicine and rehab, because it’s the joint systems. They go along with —

Gretchen:  09:38

Pulmonology. Spent a lot of time in pulmonology. So, you know, and every test you go in, you’re you want an answer, and yet some of the answers could be worse than what you think it could be. And eventually they narrowed it down to either lymphoma, which is what killed my dad. He had brain cancer. And lymphoma or sarcoidosis, and then they said, “Well,” that was a Friday night, and they said, “We can’t do the test till Monday morning.” So, I sat there in the hospital with my family going this is, like, do I have the same thing my dad does. And then, they finally did the test on Monday with the bronchoscopy and came back sarcoidosis. So, it was like, okay, now, you know, take steroids and all of that other protocol aspect of things. But it was a lot. It was very painful, very scary, very long journey to get to that diagnosis. And then, you know, a long time of recovery after that. 

Cheryl:  10:33

Yeah, and I think you really described so well, that rollercoaster of emotions when you go from ‘Can someone just listen to me and take me seriously?’ And then, they are and then you’re like, okay, well, now this has opened the door to like a whole new set of fears and worries like you’re saying, because now they’re really taking it seriously. And that’s just such a emotional whiplash. Like, I had a much less emergency situation than you did and in every possible way. But I still vividly remember that whiplash between being desperate for someone to listen to me, because they kept saying I was just anxious. So, they were sending me to psychiatry, psychiatry, psychology, and I’m like, I’m anxious because no one’s listening to me! I’m sick. They’re like, well, you have this disease called ‘People who think that they’re sick, who aren’t sick’. I’m like, uh-huh. And then, you know, then like, two days later, like, “Actually, you have like severe rheumatoid arthritis, like all your numbers off the chart, we need to start you on this, like, heavy duty medicine.” And I was like, wait, wait, wait, wait, what? You know, sorry. I mean, that’s just totally — I walked into the clinic, I was in pain, but nothing to do with, not as severe as what you’re talking about. So, I think that’s, that must have just been such a, it’s such a whiplash. But then, you’re also like, well, you’re relieved that it’s not lymphoma. But then, it’s sarcoidosis. And I have to learn what that even is.

Gretchen:  11:53

Yeah, I mean, it was both a stack of paperwork and a lot of, you know, googling what it all is. And it’s still, you know, I think it’s a — it’s a wide-ranging disease. There’s many different syndromes of it. It’s still somewhat unknown, and not what as well studied, obviously, because it’s a lot more rare. And I’ve had a lot of flare ups. And, look, I am, I think most of us know that you tend to when you are diagnosed with one autoimmune disease, it seems to open the door that you will have others, right. I’ve got other ones that I won’t go into. And there’s always this, it’s weird. It’s like you don’t it’s not that you’re wanting another one. But you’ll have a flare up of something where you’re feeling something shift in your body, and there is this awareness of like, what else? Is there another one on the horizon? And yet at the same time, after all this time, it’s kind of like, okay, I got this too.

Cheryl:  12:56

Yes, yeah. In the Rheum to THRIVE support group, we’ve started calling ourselves autoimmune collectors. I collect them all, like —

Gretchen:  13:07

Oh, my god. I love that. Yeah, Gallows humor. Yeah. You gotta have it. 

Cheryl:  13:12

Yeah. And you don’t have it yet. I mean, and it’s at that point, when you were first diagnosed, and once you’ve kind of ‘survived’, for lack of a better word, one complex chronic condition, then you kind of get the sense that okay, I’ve built this experience of this sounded really scary. And I’ve kind of gone over the ups and downs, and learned that I can cope with it. But oh, I just wanted to, just for the record for the people listening, I mentioned that because I always thought sarcoidosis, I’m just gonna state the myth that I believed — and so this is not the truth — I thought sarcoidosis was always the something to do with inflammation in your lungs. It typically is but like, according to the Mayo Clinic site, right, it’s the growth of tiny collections of inflammatory cells, granulomas, in any part of your body.

Gretchen:  13:59

Yes, all of the above. So, that is the one, from what I understand, the common thread through all the various findings is the lungs, which is why that was the determining factor is like, they’ll  — basically the granulomas from the lungs, because it could also be lymphoma there, right? So, it’s like if we see the granulomas, then it’s our code. If we don’t, then it’s lymphoma. And I’m obviously simplifying the heck out of it. I’m not a doctor, I don’t have any commas after my name, but.

Cheryl:  14:29

Comma, awesome person/multiple half-marathon runner, I’ll put some commas. Yeah. And actually, so the next question I was going to ask is, you know, what are the treatments, like, what have you tried and how has that worked?

Gretchen:  14:46

Oh, all sorts of things. You name it, I’ve tried it. I, obviously, like a lot of people who deal with some form of autoimmunity, you know, I’ve been on more steroids than probably, you know, maybe not more than NFL players, but a lot. And — sorry, NFL players. So, yeah, I’ve been on a ridiculous amount of steroids and you just, I grow tired of that protocol that that’s like the first thing to go to. And so, and like as I mentioned earlier, I do take Synthroid every day, and that is the amount of times that I have been poked and prodded and had blood tests. Like, again, this is something that in the autoimmune world, like you’re constantly getting blood tests that I couldn’t possibly be afraid of needles at this point. You know, and then when you’re in the hospital for eight days, and it gets to the point where they’re trying, they’re having to find the tiniest needle because all your veins are like done. But I’ve had my blood tested more than I could possibly imagine. And I sometimes, I think about is, like, I’m stronger because of all of this autoimmunity journey, right. It’s like blood tests don’t bother me; infusions don’t bother me. 

You know, it’s just there’s this grit, I think, that a lot of us have, it shows up different for everybody. But it’s kind of like if you can survive the diagnosis journey, if you can, you know, understand how the treatment works best for you. And so, like I said, I’m always having to adjust my Synthroid, having to add things, dial it down, dial it back up, you know, so you’ve got to manage that. And be super hyper aware of it. And I’ve had times where, you know, I’ve gone on a trip — I’d never, of course anymore, put my medication in a checked bag — you just learned that one time, and then you never do it again. And you’re like, and I’ve been without my medication. And now here’s all the fallout from that. So, and then in terms of treatment, like, it really depends on the flare ups, it depends on infections, it depends on the inflammation. 

And then, you know, after all these years, I’m bound to, determined to create my own team of people who helped me understand my body better, and they understand it and say, “Hey, let’s try this. What else is possible?” as opposed to you can’t do that. So, I added acupuncture, that makes a huge difference for me. I do a lot of infusions. I work with a naturopath as well as my regular doctors. I have my, you know, corticosteroid inhaler, and my rescue inhalers and all that kind of stuff always nearby. So, it’s a, it’s adjusting the treatment plan for where you’re at in that moment, which you can apply that to anything in life.

Cheryl:  17:35

Yeah, I think that’s, you know, a beautiful example of, you know, the natural methods can be done alongside traditional medicine. That’s something that comes up a lot on this podcast, I mean, for rheumatoid arthritis, the treatments are much more targeted, you know, they’re very specific, and they really can put the disease quickly into remission, which is amazing. In your case, there really aren’t as many good treatments that are really targeted for sarcoidosis, or Hashimoto’s from my understanding, so it’s even more reason to, I think of it as like, throw all the tools, you know, in your toolbox at it. Unless there’s any evidence, like in the case of RA, just for the record, like chiropractic, there’s evidence of harm, potentially causing instability of the cervical spine, like, you have to be careful if something might harm you.

But yeah, I mean, I think most patients, and you probably have been asked this by a lot of people, they just want to know, like, hey, how do you manage this? Like, what does it look like? What’s a day, you know, in your life like, you know? Oh, I go to the acupuncturist, you know, on these days, and I take these medicines when I have a flare up. And I think it’s hard. You mentioned flare ups, do you ever have a hard time explaining what like a typical day in your life is because it’s so variable. Like, with, RA mine goes up and down. Is that similar with you with sarcoidosis and Hashimoto’s?

Gretchen:  18:51

A hundred percent. A hundred percent it is. I love how you put that. It is very, very variable. Very, very variable. And you have to become your — you have to become both your own expert and your own advocate. And you, unfortunately, not fortunate unfortunately. But like, because of the length of my having dealt with all of this. I’m actually quite used to not being heard, unfortunately. And not being understood. And so, you kind of, you’re a little bit of a lone ranger in your health. And so, then when you find people who understand, when you find people who get it great. And I don’t, I no longer take it personally when people don’t, because it’s not about me, that’s their limitation, and that’s fine. And I accept that. And then, I meet them where they’re at. And so, I just shift what my expectations are. And so, with a flare up, you know, there’s the few people in my life who understand it. I just have to say ‘flare up’, right, and they’re like, okay, I get it. I actually just had a flare up. 

And so, some of my flare ups can be so severe I end upback in the hospital, right? And then, other times they’re, when I’ve gotten a lot better is I’ve started thinking of it as like, where’s the canary in the coal mine. And then, that helps me go, oh, something’s going on. So, I had a flare up in February out of the blue without thinking, without saying, “Oh, so I’m going to be tired this week, I fell asleep on my couch at 8pm. And I didn’t wake up till eight or nine the next day.” And that previously would have made me say, “Oh, I just must be exhausted about the X, Y, or Z this week.” And my first thought was canary in a coal mine, what do I need to do? And so, you know, and I had some worries that, “Oh, no, what if this takes me off my game, and I’m not able to do this big bold challenge?” 

And so, I was worried about that. And so, it almost made me more assertive in terms of how to take care of that. And then, in that particular case, I think because I jumped on it so quickly got to my doctor, said, “Let’s do some blood work, what do we need to do,” and then I just rested as much as I possibly could, instead of fighting through, right. And that’s always the balance. Like, I rely on grit, I rely on relentless resilience. All of it has to be done with awareness though, right? Because I can’t just — every single time I have pushed through simply for the sake of pushing through, and paid for it.

Cheryl:  21:24

That is so poignant. And I think that’s one of the most common FAQs I get. And I will say, I’m like a, so not an exercise guru the same way you are, but I just started — I was college soccer player, and then I became kind of less active over the years, and the RA, but I just really started my own exercise regimen. And I started strength. I always loved cardio. I’m one of those freaks that loves running actually. But I didn’t like strength training, I just didn’t prioritize it. And I just started strength training, like twice a week in a gym setting with like a personal trainer. And it has been unbelievably helpful for my RA, for my cognitive symptoms, the brain fog. I thought, oh, my gosh, I was doing this for my joints. And now my brain fog is a lot better. My sleep is better, all these positive things. But you’re right that there are — there’s been a couple of times in the workouts where I’m like, no pain, no gain. And I could tell I’m about to push my body too far. And I just do it anyway. And I paid for it.

Gretchen:  22:28

That — but that’s the, that’s part of this, right? Is that there — one of my, one of the things I love to always think about is progress, not perfection, right. So, like, I’m never gonna get the flare ups perfect. But I made progress this last time that I caught it sooner. And the listening to the voice, do I push? Do I not? I have a lot of conversations with friends about specifically that, like, when do you listen to the voice that says ‘Today’s a rest day? Nice try, you’re not going out’, versus ‘No, this is the day that even though you’re tired, still push yourself because there’s going to be something that comes from this’. I’ve been trying to hone those voices for years, and I still sometimes get it wrong, right? I still, you know, go right when I should go left and, you know, and vice versa. 

And so, then it’s like, okay, now what do I do with that? I just deal with the reality of what is, like, I might have gotten it wrong. But can I learn something in this right? So, that’s why then later, for example, this last flare up, I got it right. I’ve gotten it wrong before. So, now I’m applying that knowledge, right? Instead of beating myself up, it’s like, okay, next time I will, right. And for what it’s worth, I just got into strength training last June. So, it hasn’t been yet a year and I’m in mass, like, like heavier weights, which I’d never done before. And I’m not going back. I love it.

Cheryl:  23:49

Me too, I’m totally converted. I started doing it with my parents, too. Like, once a week I go to their house and I’m having them do the exercise bands too. Because I know it’s important, like, as we age and stuff. But yeah, I think, you know, I was gonna ask, a lot of people asked me about symptom tracking. Like, what you’re saying is, you know, you notice your own patterns, you start noticing the canary in the coal mine, like, for you. Sleep is a big one for me, too. Like, if I suddenly find my body craves and needs more sleep, that’s a sign that something is about to be off, like it’s coming down with an external. Do you track your symptoms in like a journal or an app? Or do you just kind of keep track of it in your head?

Gretchen:  24:26

I wish I could say I keep track of it in a journal or an app. It is mostly my head. From the standpoint of it just, again, it’s all an evolution. Who knows, you know, you and I could talk in a year I’d be like, oh my God, I’ve been tracking in an app. Like, if you told me two years ago, I’d be hardcore, you know, faithful weight trainer, I would be like, right. So, I open and I stay, you know, one of the things I like is I stay curious, you know, and that that applies to so much of this. And so, I’m open to it. I don’t at the moment track it from a really formal way. I am trying to be, when you work on trying to be really present and staying curious, and that aspect of things has helped me then notice sooner that something shifted. 

And you’re a hundred percent right with the fatigue. That’s like ‘Oh, something’s up’, as opposed to ‘Oh, I’m just overworked’. It’s like, okay, let me let me track what the last week has been like, is that really what it is? Or have I been energized, and this just came out of nowhere? So, the way I approach everything from my autoimmunity journey to inflammation to running and everything in between, like, I always have this visual of like, I’m constantly breaking glass to make a mosaic, right. And if you just — and that feels more emotion that feels more present. And that feels less restrictive, like less limiting, because it’s like, okay, I don’t like the way this glass is looking. I’m gonna break it and make a new mosaic.

Cheryl:  26:08

Mm-hmm. That’s beautiful. That’s really a beautiful image. And I do, you know, I think for me, I heard like a thread of self-compassion in what you were saying, which, like you give it your best guess. And if you ended up being wrong, you hold that with a sense of curiosity and self-love. And you say, okay, I did my best, right. And that’s where I think — I actually, I don’t keep track of symptoms in any sort of master file, either. So, some people, it really is a personality thing. Some patients really find it empowering. And they feel a sense of control when they track symptoms and notice patterns. Others start and I mean, they get overwhelmed. And they’re like, I actually feel worse, because now I’m just writing down all the times I feel crappy in my day. So, you know, it’s just context is everything. 

Gretchen:  26:55

What works for you.

Cheryl:  26:56

Yeah, exactly 

Gretchen:  26:57

Do what works for you. I love that. 

Cheryl:  26:59

Yeah. And I do, we are going to move shortly on into the actual running part of this, but I didn’t want to forget. So, I’m going to — we also talked a little bit about social, you know, social life and with flare ups. How do you —? You know, you mentioned a little bit like, some people won’t get it. This is like, a few minutes ago, you mentioned, you know, some that’s one of the common threads that comes up in my support groups as well is like, how do I get friends and family or loved ones to understand that this is going to be an up and down journey? And, you know, there’s going to be flare ups, there’s gonna be remissions, and not like, blame me, or anything, you know. What are — what would you like to share about, like, maybe your experience or any tips for —? Help us! No, just kidding.

Gretchen:  27:42

Yeah, I think, you know, I just saw this great phrase, it is now in our vernacular suddenly, it currently is ‘having a couch friend’. And, yeah, it was something about that. And I’ve, of course, applied that to something around this. And it’s like, you know, look, the reality is, there’s a level of acceptance of not everybody’s gonna get it, right. And so, that was the shift for me. Instead of being in this place of being mad at people, or ‘I can’t believe they don’t get it’. It’s like, look, I do my prep work by knowing what kind of an environment I’m walking into. If I’m walking into a home, or a meeting, or group of people that are not going to get it, I’m not going to stay in there and be pissed at them for not getting it. I know they’re not going to get it. So, I’m going to, I’m going to show up in a way that works best for me, or remove myself from a situation. And then there’s people who do get it. And then, there’s, I think there’s multiple categories. I don’t approach life in a binary way of like, there’s either people who get it, or there are people who don’t get it. There’s also people who want to get it, they may not fully get it, but they’re still there for you, right. 

And that’s like, I have couch friends. One of my dearest friends down in San Diego, one of them, we can sit on a couch all day long and watch movies, and I don’t feel like I have to show up or be a certain way. Or if I’m down there and I’m battling some kind of flare up, it’s like if I gotta take four naps in that day, I can do that. And other times there’s going to be other situations where I know that’s not possible and, you know, I do kind of push myself but again, I’ve been dealing with this more of my life than not. So, I don’t fully know any different. I don’t — well, I don’t know what it’s like to be that person that doesn’t have to worry about their health, right? Like, I’ve talked to people who are like, “Oh, God, I never go to the doctor. I never have got my blood drawn. I’ve never,” and I’m like I get stopped short by that sometimes. I’m like, what a — that’s so different. And I almost said ‘What a blessing’ and yet I know that I’m who I am because of this lifelong journey that I’ve been on with autoimmunity and I’m stronger because of it. 

I show up in different ways. I make bolder, bigger decisions because I’m trying to do something, maybe make a difference and do things like that. And it doesn’t mean that I haven’t had weeks, months, years of darkness and fear and being, you know, abandoned and feeling alone in a lot of ways. But instead of, I’ve gotten to a point in this journey where I’m trying to figure out how to — I don’t want to it’s not trying, like, make the best of it, right. It’s how do I use what I’ve been through to do more? How do I use what I’ve been through to teach myself to create more awareness about how my health journey can continue to unfold? Like, it’s not over for me. It’s like, I feel like I’m trying to mine the experience of what I’ve had in order to both improve my own health and help other people. 

Cheryl:  30:54

Yeah, I once heard this phrase ‘Turn your pain into purpose’. It really resonated. Like, and it’s so true, like you said, I think we have a similar mindset of like, I don’t want to sugarcoat it or say, “Oh, you just made the best of it.” But it is like, actually, I follow the work of a psychologist from the University of Washington called Dr. John Gottman, and he has this, you know, thing about, yeah, a lot of what he does is about relationships, but I actually relate a lot of it to chronic illness, too. He talks about, like, turning towards versus turning away? And I think about not just in terms of our romantic partner, but turning towards like your life with a disease versus turning away and trying to fight it. You know, living in harmony with it is such a more, you know, peaceful way to live, I think. 

Gretchen:  31:42

Yeah, it’s, I love that you said that. I’m amazed as I started doing this fundraising how many people from previous professional roles that I’ve had didn’t know. And I was like, oh, my God, that’s right. I spent so many years trying to pretend like everything was fine. And there’s a lot of factors and reasons into that. And there is a freedom in being more open. And it’s interesting in it, you know. I’m still learning, I’m still pushing, I’m still working with doctors. There’s, you know, some that come in, and you work really well with him for six months, and then you move on to somebody else. And I’m always trying to figure out, what’s the right balance. And I feel like in the autoimmunity world, we use words like balance, and juggle, and manage, and all of those types of things all the time. 

But that is what we’re doing, right? We’re juggling this, and we’re managing this. And then, again, you can be doing everything right, and something can still go wrong. And so, what do you do with that? Okay, well, let me be present in that moment and use it in order to take that next step or move into that next form of treatment. And not beat myself up for like, oh, I should have, you know, I should have done it this way, or should have done it that way. I can’t go back and do that. So, I can take the learning from it, apply it to the next time, and then deal with what is in the moment.

Cheryl:  33:05

A hundred percent. I think a lot of people are really afraid to confront the reality that some problems are not solvable. And like you just said very casually, you can do everything right and still things can go wrong in your health. That’s a very threatening idea to most people. Most people would rather think, “No, you did something wrong. That’s why you got sick,” you know, good things only happen to good people, bad things happen to — not just a bad person, but you’re saying like, well, what was your diet like? Well, what was this? There’s a book I read once. Honestly, it influenced me more than anything in regards to accepting my illness. It was called ‘Fooled by Randomness’. It’s not about health at all. It’s about just how humans are fooled by randomness all the time in our lives and how we think like correlation means causation. You know, we see two things and think that one causes the other. And it’s really true with our health, right? 

It’s so much of it is we don’t like to think it’s out of our control. But that’s probably the best thing that autoimmune disease has given me is the is I’m like, no, I know there was no external reason for me to come down with rheumatoid arthritis. Like, no family history, trauma, no, like, no other coexisting health issues. I was happy, healthy, like everything was going well. And then, I did get a virus, I got a virus, this thing called Coxsackie virus and that is one of the known triggers for autoimmune disease. I got that, but there was nothing in my control that I could have done. You know what I’m saying? Like, that’s life. Like, kids get cancer, like it’s not all under our control. But people like to live in this illusion that, oh, if you just eat organic and you just do that every day, like —

Gretchen:  34:36

Well, if that were the case, at this point, I’d have zero flare ups and that’s not, you know what I mean. And, you know, you said something about that everything’s in our control, that that’s one of the biggest teachers of all of this for me is like I can’t control external. I can control how I show up, right. I can control how I show up into a group of people, into a doctor’s appointment. I can control how I show up in my day. That’s about the only thing, right, is I can control my reactions and how I show up. And, and the rest of it is, you know, like we both said, you can do everything right. And something can still go wrong. And there’s that, there’s a softening for me in that, like, towards myself is like having a little bit of grace for, you know, you did everything you could, right, and something still went wrong. And there, it’s — you didn’t do anything wrong. And so, it has taught me, like you were saying earlier, like a lot more self-compassion. It has taken a long time to get there, you know, but it’s — and honestly, if I ever expect or want compassion for others, I kind of have to start by giving it to myself.

Cheryl:  35:51

Yeah, one of the steps that Dr. Kristin Neff lists out for self-compassion is, first you give, you know, you honor the present moment and give yourself the comfort you give a friend. But then, you connect to the universal human experience of suffering. So, it’s not just about you, too, right. So, that’s helpful, too, to recognize that every, you know, this is not just a ‘Me’ problem. This is an ‘Us’ thing. We all suffer, whether it’s from health issues or other external things. So, one last thing, before I go into the half marathons is, do you have any advice for like caretakers or like someone listening who’s like a loved one of someone with a chronic autoimmune condition, how they can be there, and maybe do’s and don’ts?

Gretchen:  36:37

How long you got? [Laughs] I mean, look, I’m gonna get real personal here for a second. And I, just because I know we have a short attention span for suffering, I will flip this story, I promise. But when I — I was in a long-term relationship for over 10 years, when I got sick, and it was about six, seven years in. And look, as a caretaker, there’s a lot of worry, there’s a lot of fear, there’s a lot of frustration, there’s a lot of changed plans, there’s a whole lot of that. And when I — I definitely, the underpinnings for me felt like I was disrupting his life. And technically I was. I wasn’t, my health was. It certainly wasn’t intentional. And I get it, look, intent does not negate impact. I’m fully aware if that. At the same time, you know, I’m doing the best I can. So, all of these appointments, and I know there were some of these trips for him that were very special, and all of this type of thing. And you know, I had a family member fly in to help out and all that kind of stuff. And when I say, you know, here’s six weeks of multiple appointments, and immobility, unable to walk, and eight days in the hospital, and all of this. And I’ve been home for a couple of weeks, still basically immobile, laid up in a hospital or laid up on the couch. And he sits down at the end of that couch in a chair. 

And he said, “Hey, can we talk?” which was never a good sign. And but I’m, at this point, I’m drugged up I’m in pain, like, I’m, you know, kind of optimistic thinking, maybe, you know, maybe he’s realizing like, God, this has really scared me, I never want to lose you, you know, what have you. And he said, “I just want to say, like, this has been a lot. I mean, this has been really hard…” And I’m feeling hopeful in the pause. And he says, “… On me.” And my heart broke. Basically, for me, my heart broke for me from the standpoint of oh, crap, I have to suddenly get better, even though I didn’t know how to do that. But that was where my mind went. I was like, oh, shit, we have to — pardon my language — we have to get back to perfection, we have to get back to everything’s okay. I’m not the sick person. I’m not damaged goods. I’m not less than. And that was what that told me that I needed to do. And so, I did. I went into this weeks and months, and maybe longer phase of everything’s fine, everything’s okay. 

And I did eventually — and this is one piece of advice that I would give to folks is I actually eventually went into therapy specifically for who am I now with all of these diseases and really owning it, and finding somebody who could. My identity shifted, right? Instead of pretending that it didn’t, I was like, I need help, right. I need to understand how to live with this together. Because you know, where I might have gone to a gym and been standing on a street corner and my muscles hurt, before I go, “Oh, I’m sore,” after this, that would happen and I would go, “Oh, it’s back again,” right. And so, there’s a way that you just go through your day is different and I needed help I needed support in how to manage that. And so, that experience of as a caretaker, as someone who I thought had my back was at my side, was going through this with me, to say that to me in that moment, and of course, you know, years of relationship was all piled in there. It was, it was actually pretty devastating at the time. And it’s one of those crystal moments that I’ve never forgotten. 

And here’s where I’ve turned it. On the flip side, what I’ve been able to do with that experience in that since then is talk to people who are caretakers, spouses, partners, family members of folks who have chronic illness, autoimmunity, et cetera. And say this, I see you, I hear you. It is absolutely hard what you’re doing. It’s not easy. Like, first of all, it’s not easy to watch your loved one go through pain and be in pain and go through difficulty. It’s also your life is disrupted, there’s worry, there’s frustration, there can even be anger. You have to get that out. Just don’t do it at the patient. Don’t make them feel like they are a burden, that they have disrupted your life, that they’re a problem, that they’re exhausting and exasperating and frustrating you. 

So, then what do you do as a caretaker? You go build your team, just like we as autoimmunity folks have to build our team. Like, who has your back? Who is going to listen without judgement, with all the frustration and exasperation, and all the things that don’t feel great that you have to get out? Get the therapy, get a team of people around you that you can vent to, get the people who will be like, we’re just gonna go out and go bowling until you fall over, like whatever you need. Do you want to — do you want a room that has plates that you can break and get angry? Go do that. It’s the oxygen mask on first on the plane before you can take care of others. If you are unwilling as a caretaker to do that, you’ve got to find them somebody else because as a patient, the last thing you want is that more stress, which can actually cause more inflammation and more flare ups and more issues. 

So, I feel clearly very passionate about that. And I’m really proud of the fact that I’ve been able to take my own terrible experience of feeling completely unsupported, like that ‘Then therefore, I had to make it okay for them, that you know that I was less than, and let me take care of you’, and been able to turn it around for other people. And I’ve had people come back and say, I’ve shifted the relationship with my spouse, because I don’t, I’m frustrated, and I have all this stuff that I gotta deal with, but I don’t put it on them because their job is to to get healthy or to manage better days. So, that’s my main — that’s my hope. And my wish for people that if you — is that there, you do need to be recognize that it is not an easy position to be in. And let’s be intentional about how we go about taking care of ourselves so that we can be more there for the person who needs us.

Cheryl:  43:01

First of all, thank you so much for sharing that. Because I know that even though you’ve shared it before, and there’s been time, I think anytime we revisit those memories, it can, it’s tough. It’s tough to think about that, that how vulnerable, I’m just imagining how vulnerable you must have felt, you know. And then, thinking that he’s about to say something positive. And, like, we’re in this together and the both of us are like, yeah, I’m a little stressed. But like, I obviously know you’re suffering more than me or whatever. But then, to have it be thrown back in your face, like, so get yourself better so that I don’t have to deal with you, you know, like, that’s just, it’s horrible. 

And I’m going to link in the show notes one of the articles that I really think about a lot. It’s called the ‘Ring Theory: How to Not Say the Wrong Thing’, and I don’t know if you’ve ever heard of this, but it’s just a visual description of exactly what you just talked about, is saying whoever is, like, is suffering at the moment. Like, let’s say, it’s actually the example that the person gives in the article is from cancer. Okay, so cancer, their coworker came in and visited them and complained about how hard this person’s cancer was for the coworker. So, the person, let’s say in this case, the person with autoimmune disease, they’re the middle of the circle. And then, there’s a series of circles that are bigger and bigger, like a target, right? When they say, you are allowed — you only need to give, you need to give comfort to anyone who’s closer to the suffering person than you are. And then, you need to, if you want to vent you only can vent about how the situation affects you to somebody further than you from the circle.

Gretchen:  44:32

Right, right. Love that.


Cheryl:  44:35

The visual, my brain is very visual so it’s like you, like, if you’re the best friend of the husband of the person who’s sick, the best friend offers only comfort to the person who’s sick and their best friend, and then they can dump or vent to people for that event, about the situation, seek comfort from people, like their own parent or their own other friend that has nothing to do with the situation. So, I think that’s, yeah, isn’t that interesting? 

Gretchen:  45:03

That’s brilliant. I love that. I love that. Everybody needs to, everybody needs to vent.

Cheryl:  45:09

Yeah, we all, we just need to, like, carry this and be like — actually, it’d be hilarious to carry this little circle thing around, “Excuse me, I’m actually — you can’t complain to me about that, because we’re too — you need to find —” So your suffering is valid that, like, in this case, the person that you are with was genuinely, I think, I think all humans are entitled to whatever emotions come up for them, their emotions are not in our control, right. And so, feeling angry, feeling frustrated, feeling like — I had to have the conversation with my own husband about he’s an engineer, you know, and he’s a lot more private than I am. So, I don’t share a ton about him on the podcast. But I’ve shared this story before that, we’ve had to have a conversation of I understand that for you — I’ve said to him — it’s threatening for you, because you’re a problem solver and you like to solve it. And you’re amazing at it. And I like that you solve problems. 

I’m not one of those people that’s, like, don’t solve my problems. I’m like, no, please solve my problems for me. But some, my health is not a completely solvable problem. And I, like, we need to have kind of a script or some sort of routine for what we do that when we encounter an unsolvable problem that’s not shutting down, because that is not helpful for me. So, right, it’s that whole thing is just, I think the example is just, you know, a good reminder to anyone that if you’re the caretaker, you shouldn’t — I know, some caretakers think, “Oh, well, I don’t, I shouldn’t feel bad because I’m not even the person in pain, you know, my friend or family member’s in pain,” but you are entitled to your pain. You just need to seek comfort elsewhere, right?

Gretchen:  46:37

Exactly. I mean, if there’s one thing that our autoimmune has taught me is the the old improv concept of ‘Yes, and’, and you just nailed it, right. It’s like, “Yes, this is a frustrating situation… And this is how you be intentional about how you deal with it.” 

Cheryl:  46:53

That’s beautiful. I just listened to that song by Ariana Grande. I’m sorry. So, I’m like this is synchronous. 

Gretchen:  47:01

It’s perfect. I love it. 

Chery:  47:02

Yeah, it’s perfect. Well, okay, now that we’ve solved that problem, I don’t know if you want to listen to this podcast. But yeah, the next thing I want, yeah, I want to make sure to spend some time talking about your amazing achievement. Two days ago, you’ve finished a two half’s, two half-marathons, two coasts, two days challenge. Tell me all, what was this about? How did you get into this?

Gretchen:  47:25

Oh, well, the how I got into it, let’s start there. So, you know, about 12 years ago or so, so after sarcoidosis, after the initial attack, I was told I would never run again. And I kind of joke, I’m like, that’s fine. I wasn’t a runner to begin with anyway, so you didn’t take anything away from me. But then, a few years later, a lot of big life stuff happened. And I needed something. I knew myself well enough to know that I needed something to aim for. So, I decided to go big. And I went for a half marathon against doctor’s orders. And most of my friends, too. They were like, how come not a 5k? Like, why you got to go so big? It’s like, well, because there’s something, I need that, I need that reach, I need that push to see what’s possible. And it was just supposed to be one half-marathon. And very compressed story to jump to, I just did Number 121 and 122. 

So, I will say like, I have used different markers as ways to raise money. And I’ve also had a lot of ‘Do-not-starts’, we call them DNS’s in the running world. So, signed up, couldn’t do the race. And I would say every single time it’s because of a flare up or some sort of physical issue that is due to my health. And so, and sometimes I will push through, clearly sometimes I don’t, which is the right thing. But like I had a really bad flare up two weeks before my 75th half-marathon and had doctors in whatever hospital I was in at the time, you know, those particular doctors said, oh, you’re not running that one and on, you know, two-and-a-half weeks from now. And I was like, you know, I’m back on morphine, back on antibiotics, back on anti-inflammatories. And I said in my head, I didn’t say this out loud, I was like, watch me. You guys clearly don’t know me very well. And then, like the checkout Doctor later from that, he heard the whole story. It was a different guy. And he was like, “Yeah, so I’m not going to be the one to tell you no.” I was like, oh, you’ve gotten to know me, I appreciate that. 

And so, all this time later. So, here I am. It’s a few months ago, and I’m thinking about March’s Autoimmune Disease Awareness Month, which I tried to do something around awareness every year. I know of Benaroya Research Institute. It’s actually strangely enough kind of synchronous timing, in that it was 10 years ago that I first went to their luncheon and learned about, and it’s an emotional experience for me emotional memory for me, because I remember I went into the lobby where you know, all the materials are, and the signs, and the celebration of what it is that they do. And I saw a couple of my autoimmune diseases listed. And it was the first time that I felt seen. And that I felt like I was part of a community, that I wasn’t alone. 

And so, I’ve been part of the Benaroya Research Institute, BRI community since then, because I so fully believe in what it is that they’re doing that these, the autoimmune diseases are being studied by themselves, they’re bringing them together so that they can understand the commonality, or the common thread that might be there because they all have to do with the immune system, right. And so, I, to me, I have such tremendous hope because of that. So, I’ve always been wanting to work with them more and more, and also raise money through an organization called Operation Shooting Star. Audrey, she herself has MS. Her dad has RA and she kind of had the parallel idea of like, I think we used to say ‘We cure one to cure all’. And so — 

Cheryl:  51:13

Love that. 

Gretchen:  51:14

Right? And so, that was, we ended up for the 75th with Operation Shooting Star, we raised a bunch of money for BRI. And the pandemic has changed a lot of things. And this all came together very quickly. And basically, one of the things I tell people all the time when we got these big, bold goals is you just got to take one step, which is the same thing in our autoimmunity journey. One step, right. It’s you can’t tackle all of it at once; you don’t think about the finish line or a cure right now. You think about what’s my one next step. And so, I thought to myself, there’s this race in DC, there’s this race in Portland. I’d love to do both of these races. Suddenly, this year, they’re on the same weekend. I should pick one. And then, I thought, well, I’m not — I don’t want to pick one or the other. I told you earlier, I don’t live in this, you know, binary, either/or type of world.

Cheryl:  52:06

Why not both? That’s very ‘Yes, and’.

Gretchen:  52:08

Right. It’s very ‘Yes, and’. And it’s like, okay, what, is there a third option? Yes. The third option, which keeps me open and curious. The third option is do both of them. Now what do I do with doing both of them? And so, I sent a quick email to BRI and said, hey, I have this wild, bold idea? What if I did both of them, it hits in the middle of March, it’s Autoimmune Disease Awareness Month. I honestly don’t know if I can physically do them. But let’s create a whole campaign. And that’s what we did, is to two half’s, two coasts, in two days. Because I wasn’t able to raise money. So, I did run my 100, the pandemic put a big year-and-a-half break and stuff, and delayed my dreams of 110 years. And so, I wasn’t able to raise money around the 100th. Then there’s that part of me — my running is bigger than me. Always has been, always will be. If anything, it keeps even growing that way. It’s why I keep running is because I’m running for other people. 

And honestly, because I’m still in awe that I can do it at all. Like, people say that to me all the time. They’re like, are you bored? Like, where’s your inspiration? And I’m like, here’s the reality is every single time I’m in a starting chorale, I get emotional, because I have this moment of, I cannot believe that I get to do this. I can’t believe I’m doing this. And that awe is what keeps me going. And so, I didn’t know if I could do it. But I thought let’s use this big, bold challenge as a way to raise awareness and also raise money so that we can, you know, speed up the process and advance research so that, you know, maybe people born 20 years from now might actually have a genetic predisposition or get a virus that would trigger something and they’re able to catch it before it becomes something that they have to manage lifelong. 

Cheryl:  54:01

I love that. And I’ve been really lucky to have researchers from Benaroya Research Institute on two different episodes by the time this comes out. And I was actually shocked when they told me that they think there will be a cure for rheumatoid arthritis specifically in the next 15 to 20 years, which I really didn’t dare to hope for in my lifetime, you know. But I think it’s such a beautiful purpose to help, you know, bring awareness to the importance of research for autoimmunity. And I think I just found this out — you probably already know this, but I’m reading a book that actually a really good friend of mine wrote called ‘Eve: How the Female Body Drove 200 Million Years of Human Evolution’. Oh, and you’ll have this. And she talks about how did you know that until recently, women were not even included in any scientific clinical trials because menstruation, like the default body was the male body. I mean, I look at your not surprised face, but I was still surprised, like, because I’m like, how do you —?

Gretchen:  55:04

Right, how do you even get the data.

Cheryl:  55:06

How do they research? And then, you have these conditions like autoimmunity that affect more women than men and they’re only being studied in men? What is the point? Like, okay, sorry, I love you, I love you, men. But like, so anyway, yeah, so sorry, a little rant. But, yeah, we need to bring all the, you know, all the visibility that we can and I just love how you’re doing it in such a creative way, you know, like — and okay, wait, okay, sorry, this is the occupational therapist in me. Like, I even looked up before this article, or before this, I looked up some articles, like, what are the guidelines for exercise? Like, what are the, like, you know, what do the doctors say? Like, and yeah, how are — I was like, it says, you know, oh, yeah, people with sarcoidosis can usually manage, like, mild physical activity. How are you doing this? Like, because this is not mild, like.

Gretchen:  56:05

Yeah, so I — but first of all, and it’s gonna sound a little wild, but I run in Newton running shoes. And they have, I found them, the first five half-marathons I did were very painful and long recoveries. And then, someone told me about Newton. And there’s a way that there’s these on the forefront of the shoe, under the pad of your feet, there’s these lugs, this technology that they use. And I started running on those, and they basically send energy back so my joints don’t take the same type of pounding that they do in other shoes. I don’t feel like I’m dragging my feet literally or figuratively. And so, that’s one thing that has been really super helpful for me. Like, I’ve run now, I mean, basically, the first five were in shoes that shall not be named, and I’ve never run in anything but Newton since.

Cheryl:  56:55

Newton. Okay, so N-E-W-T-O-N.

Gretchen:  56:56

Newton running shoes. Yeah, yeah, just like, yeah, Isaac Newton. And so, those are my, those are, I cannot imagine doing this without Newton running shoes. So, that’s a big piece of this. The other piece is, and I’ve worked with the team of doctors that I’m in constant conversation with, kind of it’s almost this, I’m pushing the edge. That’s something that I do naturally, right? I’m always kind of on the edge. I want to see how do I, how do I learn from this? Can I stress a little bit more so that I can learn from that stress and use it in a healthy way? Can I push on the edge a little bit so that it can see what else is possible? And so, I’ve been leaning on that with these half-marathons. And the conclusion that we, that I’m working on is — that we’re working on — is there’s actually a way that it’s pushed my health better so that I have fewer flare ups, right, because I’m keeping it at the, at that tip of, you know, performance, right. So, you bring sports psychology into this as much as I bring my autoimmunity into it, right. So, it’s like I’m on the edge and it’s pushing me and so it’s like it’s expanding what is possible within my health and within my autoimmunity. 

The key is I’ve also learned when I go past that, that’s when I pay for it. So, for example, people have asked me for years, “Oh, are you going to run a marathon? You’re going to run a full? Are you going to run full marathon? Or just a half?” Let’s talk about the word ‘just’ here in a second. You’re gonna run a full, or are you gonna run, you know, the half-marathon? And I, for a couple years, you know, you get into the, you know, 60’s, 70’s, 80’s of numbers, and you’re like, I guess maybe after 100, I should run a full marathon. And I will tell you, I will not do that. And there’s a very specific reason why. I ran 11 half’s in four months in order to get to Number 100 at the end of 2021. And it took me over a year to recover. Because I did too much. I then went past the tipping point. I pushed my — I pushed, pushed, pushed, pushed, pushed, keep myself on the healthier side, fewer flare ups, but then I went to the other side. So, it’s like that horseshoe effect of now I’m sick again. And I spent most of 2022 pulling out of races, going back to doctors, like it felt like a whole new diagnosis all over again. And I really had overdone it. I basically had no ferritin, my iron levels were gone. I was, my body was in full recovery mode. It had essentially shut down. 

So, to that point of like, okay, what can you do? What can you not do? I’m always willing to play with pushing a little bit more, which is what this last weekend was about. But also, and — not but — and also recognizing, okay, when do you have to tap the brake a little bit, but not tap the brake to where you’re too far off the edge? So, like, for example this last weekend, what I had on my mind for Saturday is like, yes, run. Yes, go. Yes, have a great time. We have another race the next day. And what’s the, you know, what’s the ultimate outcome? The outcome is to be here with you, right. It’s like, that’s the outcome, and to finish the races, right. So, I’m visualizing the finish lines. I’m not visualizing in this particular case, because I’m very intentional about how I approach each race. These races were not about time. So, you know, I’ve finished in relatively fast times, but it wasn’t like, oh, I’ve got to get a new PR. My bigger goal was, do the race, get on the plane, land, get my bags. And then, do the race the next day. That’s the overarching goal. 

So, for me, it really is about, like, it’s always been on that edge, how far to push to keep myself healthy. And that goes back to listening to the voice. Is today a day to rest, is today a day to push? And I’m not a typical runner. I don’t run 25 miles a week. I can’t. So, I add all this other cross training. I do yoga; I do weight training. I do a hike, I walk, I do all of these other things, which makes me a different kind of runner. Not just — I’m not simply pulling in the miles. And then, to go back to talking about the word ‘just’, all of that is why I’m really also very passionate about not saying ‘just a half-marathon’ and it’s not to rise up my, you know, personal achievements. It’s 13.1 miles is no joke, right? That’s a lot. 

Cheryl:  1:01:37

Yeah, I’ve never done one. Yeah.

Gretchen:  1:01:39

Right. And I wish we could change the name, because the word ‘half’, it’s like it’s somehow feels diminishing and less than. We don’t call a 5k a ‘half 10k’, right? 5k is its own identity, right? 

Cheryl:  1:01:51

Yeah. Just call it a 13-miler.

Gretchen:  1:01:54

Or something, right, yeah. Like, let’s make 13 a lucky number.

Cheryl:  1:01:58

It’s Taylor Swift’s lucky number. 

Gretchen:  1:02:00

There you go. There you go. Taylor Swift, new sponsor for your podcast.

Cheryl:  1:02:04

Oh, my God. I already did like a two-hour long episode of just me talking about Taylor Swift songs that I liked. 

Gretchen:  1:02:10

Amazing.

Cheryl:  1:02:13

It’s related to chronic illness, but.

Gretchen:  1:02:15

Wow, I’m impressed. That’s awesome. That is awesome.

Cheryl:  1:02:18

Sorry. 

Gretchen:  1:02:19

No, no, no. Yeah, so that — I’m very passionate about, you know, trying to see, every time I do one of these races, it makes me think what else is possible. And I don’t just mean that in running. I mean that in my autoimmune journey, I mean that in all sorts of things. And so, this last, this challenge of two half’s, two coasts, two days was very much, you know, I use — one of the other tools they use a lot of is mindset training. You have to when it comes to autoimmunity and when it comes to running. And so, I refused in the days leading up and this last weekend, and there was never doubt. I never sat there and said, “God, I don’t know if I can do this. Like, God, I hope I can do this.” It was like, I’m gonna make this happen. I was just bound and determined, because I have this bigger goal of bringing the awareness and raising the money and pushing all of that. And really, truly feeling like I was running for so many other people who can’t like I had. 

I’m not kidding you. I had a couple miles yesterday — wait, whenever that was, Sunday? Yeah. I had a couple of miles where I was dragging. And I went to my head and I said, okay, who am I running for? And I started thinking about all the stories of the people that I’ve talked to who themselves have autoimmune issues or they have loved ones that do, and I started thinking about those people. I’m like, that’s who I’m running for. That’s who I’m running for. That’s who I’m running for. And then, all of a sudden, next thing you know, like, two miles are gone. So, it just, that’s where the genesis of the weekend came from. It all came together very quickly. And there’s absolutely no way I could have done it without Benaroya Research Institute’s help. It’s just been a tremendous challenge and a tremendous adventure to go on together.

Cheryl:  1:04:09

Yeah, and I will put the link for where people can donate to the fundraising.

Gretchen:  1:04:13

Yes, please. We’re not done. 

Cheryl:  1:04:15

No, I just donated this morning. And, but the other thing I was gonna say, so for people listening, you know, I think one of the things that your journey highlights is that, you know — let me see how to formulate this coherently. Like, I sometimes feel like I want to go, I want to make decisions based, as an occupational therapist, I want to make decisions based on the best available evidence. Otherwise, it’s just too much to consider. But also, I can’t restrict myself to only the best available current evidence because there’s a lag between evidence. And then, when evidence, scientific evidence is discovered, and when it actually gets verified and published to the public — you can look if at any point in history, like in the 1990’s, I’ve had people on this podcast with juvenile idiopathic arthritis. The recommendation was, when you have pain, completely rest, do not move your joints. That is actually the 100,000% opposite recommendation today in 2024. Like, joints in motion, motion is lotion for your joints, unless you’re in an acute flare. 

So, it’s like, if at any point in history, you say, “Well, I’m only going to go on the available evidence,” you wouldn’t be open to the possibility of new and emerging evidence. In your case, you know, it might be that the average patient with sarcoidosis that most could do a 3k or a 5k. But you don’t want to say because the average patient can do that, that doesn’t mean that no individual can exceed that. And maybe your experience will inform — I’m totally spit balling here. So, I’m not saying Benaroya has anything to do with this. But, you know, the clinical guidelines, it might be — not the clinical guidelines, like the guidelines for exercise, you know, from the physical therapy and occupational therapy guidelines, we have guidelines we go on for different diseases. And they might say, hey, look in, you know, in 2020, we said this, but now it’s 2025, we’ve got this new evidence from people like Gretchen that actually you can push yourself more than we thought, and it’s okay. And not just okay, it helps your disease, you know?

Gretchen:  1:06:15

It’s very, it’s — you’ve just made me remember something that I’ve thought a lot about over the years, and that is the rheumatologist and the pulmonologist that said, “You’re never gonna run again.” And like, you know, or, “Here’s the limitations for your life,” and all of that aspect of things, I’ve often thought about the fact that once I found this new way, I never went back to them and said, “Hey, by the way,” not in a, like, you guys were wrong way. But more like, hey, I just want to give you a data point. Because who do they see? They see the people that need to keep going back every month. And once I’ve moved down to that phase, they have absolutely no idea from a data standpoint that I’m out here. 

So, had they had that, what if they’d had somebody like me? And so, when they were giving me, you know, here’s your prognosis, what if they’d said, “Well, here’s what we’ve seen, this is what we think. However, there is also still possibility,” right? And I would have had a sense of hope at a time when I desperately needed it. Whereas now, I’m creating my own sense of hope now. And so, I’ve thought about that. I’m like, I wonder if I could go find some of those doctors and be like, hey, I just want to let you know, like, there’s other possibilities out here. 

Cheryl:  1:07:29

I’ve thought about and I’ve known patients who’ve done that. And it’s a very much like a repairing the relationship if they’re open to it, which I would think of all specialists, rheumatologist should be on paper the most open to it, because they are the ones that know that there’s, everything’s a grey area, there’s no black and white, you know. And so, hopefully pulmonologists would also be open to it. I think that would be a really beautiful thing. Obviously, you have a lot on your plate, but like, maybe forward them one of those articles. Like, hey, remember that girl you told she would never run? Just to let you know, just finished Number 122. And, again, so they know. Yeah, a good, a sign of a good doctor would be knowing being able to change their mind in the face of evidence, you know? 

Gretchen:  1:08:08

Yes. Perfect. Exactly.

Cheryl:  1:08:11

Okay, well, now it’s time for the rapid-fire questions. We could probably talk about each one of these questions for five years, but yeah. What are some of your favorite words of wisdom for people newly diagnosed either with sarcoidosis or just any autoimmune disease, however you want to answer? 

Gretchen:  1:08:27

I think I would say the same way I would say it about running is just it’s one step at a time. It really is. And if I can add, you know, recognizing that you’re doing the best you can, have some grace for yourself. I actually still have a screensaver on my phone. It says ‘Be gentle with yourself, you’re doing the best you can’, right. And it’s just this reminder of, you know, a lot of this is so difficult, and it’s not easy. And so, sort of trying to get to the end of a diagnosis, what can I do? What’s one step I can do today? So, there’s that. And then, specifically, tangibly, I would also, you know, it’s to advocate for yourself, build a team of people around you, and that would include a therapist to just help you adjust to the way life is now. And that’s, that would be probably — and then, you know, make sure you have people you can be really truly yourself around. Get your couch friends. 

Cheryl:  1:09:22

That’s a dream. That’s a dream combo. Do you have a favorite autoimmune, like, gadget or joint pain gadget or tool in your toolbox?

Gretchen:  1:09:31

I use yoga toes a lot to help the feet pain, foot pain. I use TENS, you know, the little pads, the electronic pads to put on my muscles. Acupuncture, for sure. And, yeah, that would be, that’d be the biggest tools that I use, in addition to all the fun medications that we have to be on. 

Cheryl:  1:09:56

Oh, yes. You live in a good part of the world in Sonoma for I’m sure acupuncture and stuff like that. There’s a lot of the Bay Area’s is good for that. But I’m putting that, I’m lumping it in the Bay Area. I know it’s not in the Bay Area. The Greater California and whatever. Would you have a favorite book or movie or show you’ve watched recently? 

Gretchen:  1:10:16

Okay, so I have a favorite movie and a favorite book. So, the favorite movie I’m going to probably get — I’ll just own it. I had to watch a lot of hype movies like personal hype movies over the last couple of weeks. And if I could practically recite Creed at this point. So, I was born in Philly. So, I have a little affiliation from that standpoint. Also, it’s just, it’s a brilliant film. I love how it’s just a new way. It’s another way to tell that story updated way. And I think they did a beautiful job. And Michael B. Jordan and Sylvester Stallone just blew the doors off that. And I actually took, I reconstructed — there’s a speech towards the end that Rocky gives to Adonis, and I reconstructed it for my own race this week. And I’m like, one step at a time. Like, you’ve never done this before, never done this before. I’ve never done anything like what I just did, just still in shock, actually. But it’s like, okay, how are you going to do it? One step at a time, one mile at a time; one step at a time, one mile at a time. So, that’s my movie right now. Like, I just — oh, my God, I love it so much. It’s so silly. Every plane I’ve been on, I’ve seen it. 

And then, my book that I can’t get enough of, I read it multiple times. And I actually have it because I always have it with me. It’s ‘The First Rule of Mastery’ by Dr. Michael Gervais, and ‘Stop Worrying about What People Think of You’. And what is so interesting to me about this book is it has nothing to do with autoimmunity, right. And he works with like the elite of the elite type of, you know, top performers in any field. And yet, I’ve been able to apply so much of stop worrying about what other people think of you. I think, honestly, I started reading this last fall multiple times. And I think part of it is actually what’s helped me get to this point. I don’t know that I’d be as open about my health journey in the last few months as I’ve been other than stop worrying about what other people think. And the whole point of, you know, being here for a purpose, trying to make a difference. So, that’s my book and my movie. 

Cheryl:  1:12:17

Okay, I’m definitely go check that one out. 

Gretchen:  1:12:19

Oh, highly recommend it.

Cheryl:  1:12:21

Do you have a favorite mantra or inspirational saying?

Gretchen:  1:12:24

Yes, it’s all over — I say it all the time. I have a couple. You heard me earlier say ‘Progress, not perfection’ and ‘Break glass to make a mosaic’, ‘Stay curious’, I have that in ink on my arm. And of course, you know, we all say ‘I can do hard things’. 


Cheryl:  1:12:42

Yeah, I have that on my wall. I’m looking at it right now. 

Gretchen:  1:12:43

Yeah, I can do hard things. Oh, God after this last weekend, I didn’t need to prove it to myself, but I sure as heck did. But I have two things. And then, obviously the ones that were my own. But two things. One is that I think about all the time is every step is a gift. Every mile is an accomplishment. And every finish line is a victory. And I put that in every single one of my social media posts. And it’s come back to me so many times from other people, like, just the ability. And you can — it doesn’t have to be about running, you can apply that to anything, right. And again, it goes back to the one step. And then, because I’m always in awe at a starting line. And also, that means that I’m probably a little bit nervous. When I feel that nervousness, I just think to myself, and I actually did learn this from Dr. Michael Gervais, everything I need is within me, and I can adjust when I need to. So, it keeps me — let’s say mile three, all of a sudden, the wheels start coming off. I already know how to do this. I’ve got consistent practice. Okay, I trust that, okay, the wheels are coming off. I know how to adjust. I know how to shift this. Then it doesn’t feel like the wheels are coming off and nothing gets derailed. It’s just like, okay, everything I need is within me. I can just take another step.

Cheryl:  1:13:58

I love that. I’m definitely gonna read that book. What is bringing you joy right now?

Gretchen:  1:14:04

Can I be a little cheesy and say, this? 

Cheryl:  1:14:07

Yeah. Oh my gosh. Yeah. 

Gretchen:  1:14:09

Like, honestly, like this time with you has brought me tremendous joy. I really appreciate it. And I think the other, the piece of bringing me joy is just these last few days, these last few weeks have been, you know, being able to be out in the world and hear other people’s stories, get reminded, I may have been an autoimmune warrior for all these years. And I still get reminded of like, oh, yeah, I know that. But I can get reminded of things by hearing other people’s stories and feeling like I’m running for them, making sure that they feel seen and heard in their own journey, and that there’s somebody out there, maybe they’re not ready to tell their story, or maybe they’re not, not looking to run a half marathon. And I’m certainly not advocating that for people, but by doing this and kind of thinking outside the box a little bit, is the joy of connecting people over these last few weeks, in particular this last weekend, and getting in a sense to tell our stories as a community. So many people are like, “Oh, what’s two half’s, two coasts, two days?” And then I get to tell them and I’d say you probably know somebody, right? And there’s probably people in your life like this. And there’s people running races like this, and having people kind of have that ‘Aha!’ moment, and you see it in their eyes, and they suddenly realize, like, they might want to go ask a few more questions of the people around them and see how they’re doing.

Cheryl:  1:15:34

I love that. I feel that. And last one before we just share your social media links. What does it mean to you to live a good life and thrive with autoimmune disease? 

Gretchen:  1:15:45

Hmm, it definitely feels — I thought about that. And it’s, I don’t feel like I’m simply surviving anymore. I definitely am thriving with all of this. And what does it mean to live a good life is to keep pushing on edge, right. To use the stress of running as a lesson towards my health, right. So, instead of like, oh, this is a terrible situation, I feel terrible. It’s pushing it, it’s like we’ve been talking about, push it to a certain edge so that I can learn from it. And then, release some of the things that no longer work for me, and be more intentional about the ways that I show up. And so, the living a good life, part of what that is, is also been willing to be more vulnerable and open about what this journey has been. So that, you know, there’s fewer people suffering in silence, and there’s at least people were feeling seen and heard as they go through their own journeys. 

Cheryl:  1:16:40

I love that. Yeah. There’s one thing I think everyone has in common is that everyone thinks that they’re doing something wrong, and everyone else is doing it better than them. And I really, I have to remind myself that every single day I go on social media, remind myself, you know, this is not someone’s whole life. It’s just a picture. Don’t compare your outtakes to someone else’s highlight reel, you know. So, I really, I really resonate with that. Yeah, sorry. I was just gonna say, speaking of social media, where can people find you online if they want to connect to you?

Gretchen:  1:17:10

So, on Instagram, it is @RunGrateful. And the same thing on Twitter. Gratitude is a huge piece of this for me. It’s resilience and its integrity. And it’s intentionality. And it’s gratitude. Because I am grateful that, you know, it’s taken a long time, there’s no instant answers. But I’m grateful. And I’m grateful that, you know, as hard as running is, and that’s kind of where I feel free, and healthy, and strong. And I’m grateful to be able to get to run. I’m grateful that I have access to good doctors. I’m grateful that I have an ability to tell my story. I’m grateful that I have the ability to hear other people’s stories. And I’m grateful that I have the ability to keep learning, to stay curious and keep learning and like, you know, really, I’ve spent — and the probably the one thing I’ve concentrated the most on in the last year, in addition to my health and dealing with flare ups, is weight training and mindset training. And those two have been game changers for me. 

Cheryl:  1:18:15

Yeah, I agree. A hundred percent. Well, thank you so much. Again, I’m just astounded that you were — I feel like I would just be in bed two days after running two half-marathons. So, I am so —

Gretchen:  1:18:27

But don’t think I’m not going to bed early tonight.

Cheryl:  1:18:31

I should say, don’t think I’m going to bed right after this. Yeah. 

Gretchen:  1:18:34

Yeah, that too. 

Cheryl:  1:18:34

Yeah. But no, we really appreciate it. I hope, you know, I really appreciate the way that you framed everything. I think sometimes I know from the comments on social media, that some people who are in a state where their disease is really severe to the point where it doesn’t seem feasible for them to run, sometimes they don’t like hearing from people’s stories where it’s like, if I can do it, you can do it. But I really appreciate you had a more, very balanced, like, this is your story. This has worked in your body. And even if someone listening, what their goal is, is to get, you know, to walk two blocks from their house and back. That’s a huge accomplishment, too.

Gretchen:  1:19:09

A hundred percent. A hundred percent. It’s one step. It doesn’t matter what your step is towards or what it’s about, it’s can you take that one step? And maybe it could be as simple as the one step is to write the goal down, right? I mean, and that’s what I did. I wrote an email to BRI. And I said, I’ve got this wild, bold challenge. What do you think? And had I not written that, and had not written it down, we wouldn’t be here. And so, it’s so much, again, it goes back to that mindset training. It’s like if I can just, the one step is maybe it’s writing it down, and maybe it’s writing down ‘I want to walk to the mailbox today’.

Cheryl:  1:19:44

Yeah, that’s huge. If you have a hard time getting out of your house, that’s huge, so. 

Gretchen:  1:19:48

A hundred percent. I know those days well.

Cheryl:  1:19:50

Yeah, yeah. Yeah. I really appreciate everything you’ve shared today and I can’t wait to share this on social media and on the podcast, so hopefully people will connect with you afterwards. And oh, I always like to remind people that if you want to see a transcript or video of this conversation, it will be, they will be on the Arthritis Life pod — or Arthritis Life website, arthritis.theenthusiasticlife.com.

Gretchen:  1:20:15

Thank you so much, Cheryl. I really appreciate your time and energy.

Cheryl:  1:20:20

You too. Okay, bye-bye for now. 

Gretchen:  1:20:23

Thank you.

[Ending music]