Meet Sara H.- How A Crohn’s Diagnosis Sparked A Bucket List Life

Sara Herring lived with stomach pain so long she thought it was just life, then at 21 she finally got the word that changed everything: Crohn’s disease. Sara joins us for a raw, funny, and unexpectedly tender conversation about what it’s like to be dismissed as a kid, spend months chasing negative tests, and reach the point where you’re writing goodbye letters because you’re not sure you’ll make it. 

Sara walks us through the turning points of her IBD journey, from the relief of being believed to years of medication trial and error that end in a surgery she never expected. We talk about how chronic abdominal pain can become so “normal” you don’t even notice the ways you’re bending, bracing, and shrinking your life around it, and why learning to describe pain can be a powerful tool for self-advocacy with doctors. 

Then we shift into the practice that helped her reclaim her life: a bucket list book that’s part scrapbook, part journal, part proof that small moments matter. We dig into presence over perfection, creativity, therapy, boundaries with social media, and the complicated truth about remission, including the guilt that can come with feeling better while others are still in the fight. If you’re searching for Crohn’s disease support, IBD mental health tools, or hope that doesn’t ignore reality, this one’s for you. 

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Transcript

Welcome And Drink Check

SPEAKER_00 0:00

Hi, I'm Elisa, and I'm Robin, and you're listening to Battle Moment, a podcast sharing real talk about the realities of ID.

SPEAKER_01 0:08

Sarah. This week we had a lovely conversation with Sarah Herring. After having tummy troubles as a child, Sarah was finally diagnosed with Crohn's disease. We talked to her about how that prompted her to start a book of all of her bucket list items. We talked to her about some of her favorites and some of the most unique and things that have come off the list as well. And we help her check one of those bucket list items off by being on the show. Cheers.

SPEAKER_00 0:35

Hi everybody, welcome to Bell Moments. This is Robin.

SPEAKER_01 0:37

Hey everyone, this is Alicia, and we are so excited to be joined by our friend Sarah Herring. Sarah, welcome to the show. Thank you. I'm so excited to be here and share my story. Yes, we're excited to hear it because we know you, but I don't know that we have ever, I don't know that I've ever heard your story. And Robin is shaking her head so we've never actually heard your story. So yeah, we're real excited to hear it. But first unprofessional question is what are you drinking?

SPEAKER_02 1:00

Today I am drinking 19 crimes by Snoop Dogg.

SPEAKER_01 1:06

We've had somebody else. What was the crime on your do you remember? Cali red. So I don't know what that means, but my crime is Cali Red. So when you take the cork out, it'll say a crime on the cork, or it used to. Okay, wait.

SPEAKER_02 1:19

This is brand new information to me.

SPEAKER_01 1:22

They stopped doing it. It used to be that 19 crimes, like every bottle you would open, it would be like felony larceny or something like that. I mean, it was like they had some sort of weird crime on the on the cork. Yeah, I'm I'm absolutely shocked.

SPEAKER_02 1:33

I'm gonna immediately after this interview go downstairs and see what my crime is. Maybe we can overlay it on top of the podcast.

SPEAKER_01 1:40

You gotta re report back, report back. Maybe just send us a picture of the cork and say, by the way, this was the crime. Yeah, Robin, what are you drinking?

SPEAKER_00 1:47

I am drinking a lovely sangria.

SPEAKER_01 1:51

Ooh, for real sangria, Robin?

SPEAKER_00 1:54

Real.

SPEAKER_01 1:54

My goodness, Robin.

SPEAKER_00 1:56

Having an alcoholic beverage, everyone.

SPEAKER_01 1:59

Do you normally not? I haven't in a while. That's okay. I've been in a mock tail mood lately. I'm sure you consulted with your doctor and made sure it was okay.

SPEAKER_00 2:08

So you know that I do that all the time.

SPEAKER_01 2:13

We always consult with our doctors, right? Oh, I mean, yes, absolutely. What are you drinking? I had spindrift in the in the fridge today, and so I decided to go to the Sprindrift website and look at a recipe for a cocktail. And I am drinking, I think it's called a lemon tree. However, it is supposed to have vodka in it. And you know I don't drink vodka, so I added some gin instead. So it's it's a modified lemon tree, but it's quite lovely. So it's got like some shamps in it, and it's also got some lemon spindrift in it. So it's very nice. Cheers, guys. Cheers! Cheers. I like it. Okay, Sarah, next

Childhood Symptoms And Being Dismissed

SPEAKER_01 2:44

question for you. What is your tell us your IBD story? What brought you into our community? This is my first ever podcast.

SPEAKER_02 2:50

So you'll be going into a very special book that I'm gonna be telling you about soon. So yeah, my IBD journey is similar to others on many aspects, but I'll just start from the beginning. I had always had stomach issues, pains, and really bad bowel movements. But it really wasn't until about six or seven years old when I could finally had enough words in my vocabulary to properly articulate what was happening, right? Up until then, it was my tummy hurts. I don't want to go to school. My tummy hurts. That's all I really could describe to my parents. And so as I got older and learned new words and sentences by the first grade, I was able to finally start really letting them know that things are not right. Started to struggle in school, of course, just because I couldn't focus on anything except for the pain I was in. Had not one but two amazing accidents in elementary school that my parents had to come and assist me with. And it took them about three to four months to, at the time in the 90s, get to the bottom of it, which wasn't the answer. The answer they gave me after many tests and and things was that my six-year-old, seven-year-old self had an altar because I was stressed and to take Xantec 75 every single day after lunch. That was the resolve in, I don't know, 1996, maybe seven. I'm aging myself here, but that's okay. Um, so at that point, and I'll be honest, up until then, that whole that whole process of going to the doctors really for the first time outside of vaccines. You know, I was vaccinated as a kid, so I knew that going to the doctor kind of ended in pain sometimes, at least up in my seven years of experience at that point. So I was always a little nervous to begin with. But when you're adding more complicated testing like blood draws, I had a barium scan at that age. Everything's new, everything's different. So each experience was just a little more and more overwhelming. And it didn't seem like the adults around me were satisfied with what I was telling them because they couldn't figure it out either. And so I learned at a very young age that if I didn't say anything, if I just didn't tell anybody about all this pain that I was in, that I wouldn't be disappointing the adults in my life. And yeah, it was so sad. And talking about it now kind of makes me a little emotional, but it was still part of my journey and it's still very important part of my journey. So by the second grade, I'm getting made fun of because every day after lunch, I have to go talk to Mrs. Fulware, I think was her name, and go get my Zantec 75 and take it at the water fountain behind her desk. And like everybody thinks every single day I'm in trouble because every day after lunch, Miss Fulware is like, Sarah, please come to the back of the class. So I go to the back of the class and I take my stupid pill, I'd still be in pain. And so about midway through second grade, I just stopped. I just told my mom that the pills weren't working, that I felt fine now, everything's better, that which was a lie. And honestly, just started to normalize what I was dealing with. Started to make notice that I would be in more pain around test time, around like cheer competitions, anything, any big stressful activity I had happening, my stomach would hurt and then it would go away. I mean, so I did that for 13 years and got managed to get through middle school. Yeah, I managed to get through high school and a couple years of college, even got my associate's degree and everything well before the real journey

Diagnosis At 21 And Writing Letters

SPEAKER_02 6:14

happened. Around the age of 21, I'm in full-time college, I'm at a university now. I'm being an adult. I'm living on my own. I am paying bills. I have multiple jobs trying to make my measly rent payment every month. And I wish rent was that expensive right now. It was like $430. It was fantastic. Little studio apartment on the third floor. I was a safe girly, okay? She was all the way at the top. So I was like, I was living my best life. And with your best life comes all of life's responsibilities, all of life's stresses. And I just was in, I was in a bad place at that point with my disease. We spent, I spent about 10 months navigating the entire system to try to figure out what was going on between going to see my primary care for multiple weeks, then getting passed off to a GI and then having to do testing, and then we wait for the endoscopy, and then we do the colonoscopy. So it was a matter of 10 months before we finally got an answer. And in 2010, at the age of 21, I finally got diagnosed with Crohn's disease. I remember that day vividly, it was December 10th. I'll never forget it. I was about to go into dance practice. I was choreographer and dance manager for like a semi-pro dance team at the time. Super fun job. I loved it. I remember going into practice that day, actually being happy. I was still very much in pain. I am so miserable trying to dance with these ladies and ignore everything that's happening. And I'm so incredibly skinny. I've just lost so much weight at this point. But I remember that day being so happy to finally have an answer. I remember being just honestly just elated that I finally had an answer. And I could go back to all these moments in my childhood and be validated that I wasn't, you know, a lot of the adults in my life called me like a hypochondriac, that I'm just like, I'm always sick or I'm always not feeling good. Just a lot of those memories really kind of came pouring back and really just made me feel like I told you so. I'm not, I wasn't lying. So there was a bit of grief in there too, of course, like pieces of my childhood that I definitely missed out on. But I think the thing that really made me most excited was that I would be able to accomplish my bucket list because in the midst of this 10-month diagnosis process, it was so bad at one point. I was so upset that I was so young and they couldn't figure out what was going on. I couldn't keep food down. I was losing weight rapidly. Every test was negative. And I just was beside myself that I didn't get to accomplish anything that I wanted to. And so I sat down and I wrote a bucket list. I spent a whole night, one night, very, very sick, back and forth from the bathroom, writing down all the things I wish I could have done. The next week, another test came back negative, more weight lost, more just unable to eat, unable to keep anything down. And at that moment, I feared for my life. I feared that I had something, some sort of maybe like aggressive cancer that they couldn't find. And so I went even further and I wrote letters to my family members and I assigned them bucket list items to accomplish on my behalf because I was genuinely so terrified because everything was negative, everything. And they were testing for everything. And I mean, I was even wishing for cancer at some point, just any answer to help me know what's going on so I can move forward. So getting that diagnosis, when I tell you I was thrilled, I was so thrilled. I went home and I burned those letters, knowing that I got to live a full life with some stipulations, that was enough for me. I burned those letters. I set off the fire alarm in my third floor apartment. We had a good time that night. It was fine, all was well. And I really just once I started to feel better, once

Medication Trials And Surgery Relief

SPEAKER_02 10:04

I got on a medication regimen and everything, I really started to tackle that bucket list. My story continues with after diagnosis, many, many medication trial and errors before eventually realizing that I just I needed surgery. I had almost a full blockage. We spent seven really long years trying to find ways around it. But in 2017, we that was the only option was to have surgery remove. At that point, it became a softball-sized mess. And they had removed that, which I so lovingly named flarald. And we were joking that we were going to evict flarald leading up to my surgery, which was a good time. So flareled and about nine inches of my intestines, both large and small, right where they meet, came out. And I'll never forget waking up from surgery. I immediately felt better. I had not laid flat on my back in years without some sort of stomach pain. So when I woke up flat on my back, I had surgery pain for sure. I had pain, but I could tell it was so different. I immediately felt so much better outside of the surgery piece. And I could tell that they had, they had accomplished, they went in, they accomplished what they needed to accomplish because I had immediately just felt almost relief. From there, got on in Tibio, which really helped my journey. And by three years after that, I was in remission and I have been ever since. So it has been almost six years that I've been in remission, which has been an even better part of my journey, and has just been surreal to think about how far I've come. And and I want to remind anybody who's listening, despite the reactions of my fellow podcast guests here, I know you can't see their faces, but my story is mild. My story is so incredibly mild. One, surgery is unheard of. I am very lucky. So I also want to make that clear that like my journey is very different. And I'm very grateful that I got away with such a terrible disease with such great luck, I guess, to a certain degree. So yeah, that is how I became a part of the IBD community.

SPEAKER_00 12:15

In true IBD fashion, you have downplayed your experiences and highlighted that you feel like you're the lucky one, which I feel like we have had on this show multiple times where people have told us horrific things and been like, but I'm the lucky one. And one surgery does not make your story mild, although I feel like you downplayed some of your symptoms along the way. Because if you had a softball sized obstruction, like how are you functioning? But I do appreciate you wanting to look on the bright side and wanting to embrace the positive aspects of it, but also like, girl, you went through some things.

SPEAKER_02 12:57

I went through a lot of things for sure. They made me a better person, you know, it really did.

SPEAKER_01 13:03

Yes. And I'm gonna, I'm I'm trying not to be like, but uh, yes, and I mean I I I agree with Rob. And I think, you know, it we do see a lot of our guests say, like, you know, downplay a bit of it and say, like, yes, I've I've been able to use this to learn and grow and stuff like that. I'm just sorry that you had to. And I'm sorry that your pain as you were when you were a child was sort of dismissed. And I think that's it's I think it's a really interesting thing for you to bring up, though, of just how we're communicating with kids with inflammatory bowel disease and and being very careful to moderate our tone and our face and our reactions and explain I'm frustrated because I can't figure this out, not because of you. I think it's super important.

SPEAKER_02 13:42

Yeah, that was all of my most vivid memories from that time, is just with, you know, my dad when he's cleaning me up in the nurse's office, my mom when she's taking me to the barium scan, and bless them both. They were both kids themselves. They had me young, so they were also they were 26 and 27, which I do not, I don't control my emotions at that age. Like I'm just now learning how to in my 30s. So so there's also that piece, right? Like these guys are kids themselves, and so they don't know. I'm their first kid, so they're just they're trying to learn themselves. And of course, it's the 90s, we don't have a lot of the technologies that we have now. And so the barium was not cherry vanilla flavor, my friends. It was straight barium, and it was chalky, yes, and thick, and just as a seven-year-old, like that is just so traumatizing. And so, yeah, that piece of my journey is definitely that was the trajectory that kind of led me to not getting diagnosed till 21. And so I definitely there have been many moments. I I may be positive now, but there have been many years, honestly, of grief and focusing on my mental health and accepting those parts of my life for face value, knowing my parents were kids themselves. Like I had to go through that through therapy and like not be mad at them. They're do they were doing their best in that moment too, and learning how to balance where my blame goes.

SPEAKER_01 15:05

Yeah. You know, being able to practice some grace and some forgiveness. Yes, you know, when yeah, you can see what it was, but it doesn't mean it doesn't hurt any less. It doesn't mean that it wasn't damaging, but you can still say it. That's what, you know, like, but I I recognize this for what it is and move on. I have

Naming Pain And Learning To Describe It

SPEAKER_01 15:20

a random question for both of you, which is probably par for the course here. You said pain, but not that pain, pain, but not surgery pain. If you had to describe this, what is the difference?

SPEAKER_02 15:31

So yeah, and Robin, I don't know about you. My pain was very knowing it was a softball at the end, made sense, but my pain was very heavy. I felt like I had a rock in my stomach that would throb and burn and stab me from the inside. And it was where my the two intestines meet. So it was mostly on the right side. And things that I noticed was that I couldn't like lay flat on my back, laying flat, stretching my stomach, really caused a lot of pain. So I'd always be almost always fetal position or knees up, just any sort of like folded pretzel position to keep my stomach like pressed, I guess, like pressure. I had no idea. I had no idea I was doing that until after surgery. I had no idea how much pain I was in while I was driving because I used my right foot to drive. I had no idea how much pain I was in every single day to take a shower, like just leaning back to wash my hair, that motion, pain was gone. Didn't even know I was in pain though, until after surgery, because I had just normalized that that that feeling that I felt every day. That's normal. So nothing to be alarmed by.

SPEAKER_00 16:45

Okay, this is a good example, Alicia, I think, of the difference for me because I've had different phases of pain, right? I was initially diagnosed with ultra dyculitis and then had my colon removed and then lived with an ileal rectal anastomosis for so many years, and then I got rediagnosed as Crohn's, which was completely different pain because my Crohn's was in my stomach. I mean, like there's been different levels of pain. But the best way I think that I can describe the difference is after I had that J pouch surgery in December of 2020 when everything went wrong, and you know, everything went wrong. When I finally got home from the hospital and the in-home nurse came to visit me the second day that I was home, I told her, can you just give me something to sleep? I just feel uncomfortable when I need to lay down, like to go to sleep. And she said, My friend, that is pain. You're in pain. You just had abdominal surgery to remove part of your rectum and take your small intestines and cut them up and sew them back together. And I was like, oh, because I was so used to different kinds of like loud in your face. I can't, it's so bad I can't think or focus. It's it's sharp, it's burning. It's like I could describe it. I've talked about that on the show a lot. Like in order to help advocate for yourself to get the support that you need, you really need to be able to describe your pain as closely as you can. And so I got really good at describing my pain. It's radiating, it's hot, it's burning, it's throbbing, it's all of these things because a different kind of pain is gonna indicate a different source, right? But for this, I was like, I'm just I'm feeling I'm feeling a little uncomfortable and I can't sleep. So it's just like looking at my family around me like I'm gonna give you some pain meds, babe. And I was like, okay, I'll take that. And my family's like, yeah, that tracks, that tracks for her. That tracks. Yes. And the same thing about bending over and folding. I didn't realize this, but I was talking about it with my husband and I was like stretching a little sitting back or something. And he's like, What are you doing? I said, I'm trying to sit up straight. You know, when I'm in pain, I have a tendency to like fold over. And so I'm trying to consciously sit up straight and not because I've been doing that for so long. He's like, Is that why you sit that way? And I said, Yeah. He goes, You've been sitting that way for years. Like, even like not telling him about I I didn't always say because it gets to the point where you're saying it every day. And then it is a thing, right? So I didn't say that every day. I just sit like that. And so it was like a an aha moment for him too. Because like, yeah, that I that's why I'm always sit leaning forward when I'm sitting down, because I'm if I'm doing that, I'm probably in some kind of pain. Yeah, yeah.

SPEAKER_01 19:29

It must be a little bit of a too. Like if you say it out loud, it makes it be.

SPEAKER_00 19:33

If that's or for me, yes. If you say it out loud, it makes it real. I would much rather not say it out loud. Yeah.

SPEAKER_02 19:38

Yeah. And I feel like the more that I ignored my pain, the less the more I got used to it, right? And naturally you just get used, you your pain tolerance increases. And so therefore, you you're like, oh, I'm not really in that much pain. It's just a little bit. This is a good day.

SPEAKER_01 19:52

I'm curious how you dance with that much, like with having that much softball size mass in your stomach and stuff. Like, how did how did you become a dancer?

SPEAKER_02 20:01

I danced through a lot. I mean, but most dancers are, right? We're most of us are dancing through some sort of blister or broken toe. I don't know how many broken toes I've had, you know. So we're always dancing through some sort of pain, some sort of injury. So, really, that piece wasn't too difficult for me. It got more difficult towards the end of my diagnosis journey when I first got diagnosed in 2010. The closer we got to December, the more dances that I was just out and the rest of the team was on the court and I was just kind of managing, which I really should have been from the start. But I was also young and I lit I missed dancing and wanted to be a part of the team and tried to as long as I could. And I just kind of made myself like fill in in case anybody was sick or something. I would just stand in their spot and do their portion of the dance. So, but it wasn't very often towards the end, it definitely got way too painful. I know.

SPEAKER_01 20:52

I'm glad you were able to keep stay a part of it as long as you did. I mean, like that's wonderful.

SPEAKER_02 20:56

Yeah, and I still dance now, even today. I'm I just turned. Oh, how old did I turn? I don't know, actually. I've lost count. I think in 36, I might be 37, actually. I don't know. I just had a birthday, and I go to a hip-hop class every Thursday night. So I still dance to this day. I love it very much. It's a good workout.

SPEAKER_01 21:17

Yes, I bet. I know one of the things you brought up is you wanted to talk about your bucket list, the book that you were talking about. I'm assuming

The Bucket List Books And Favorites

SPEAKER_01 21:23

is the book the bucket list, or can we talk about the book? Okay. We can talk about both.

SPEAKER_02 21:27

The book is the bucket list, the bucket list is the book. So this is it's a beautiful, like starry night van Gogh type of sketchbook. I spent my very hard-earned college dollars on this at Barnes and Noble. It was like on sale. So this is the exact book I wrote in that night that I started to list all the things that I wanted to do. And of course, there's been some organization and some purging and adding over the last 15, 16 years, but it has gotten so big and so full. I use it like a journal. So As I accomplish something, I add pictures. So here's me and my first cruise. This is me marrying my husband, starting a business, graduating from college, going to Harry Potter World was super fun. So my husband surprised me with the trip. So we got to go to Harry Potter World, running my first half marathon with Team Challenge, which was really cool with the Crohn's and Colitis Foundation. So that was really fun to do and got to accomplish that. But I keep, as I accomplish things or as I get to talking to others and listening to others' life experiences, I start to get a little jealous and like I want to experience that too. And so I started a second book two years ago because I had just filled up that first book. And so now I've got all different kinds of stuff in here as well. I was on a patient panel in 24, which was really cool for my to speak about my disease. I thought that was fun. So I added that in there. And anytime I hear about somebody having a cool experience, or when they just get really excited about visiting a place and they are just talking all about it, I'll do research. And if it looks like a good place to go, I'll add it to my book and put it on the list. And every year I try to accomplish two to three things, and it's a wide variety. I'd be a little embarrassed to show you some of these, you know. So some of them are things like I guess the most silly one, right? So most of I I assume most of us have been skinny dipping. I'm a modest girly, okay? We don't, I don't talk about that, okay? So I put on my bucket list to go have the courage to go skinny dipping. You're you're young, you only get to live once, you know? And so I waited. I waited until we had a private pool, but I did finally accomplish that and got to check it off the list. Sometimes they're little things like that, things that people experience probably much sooner than I did. Or it's something small like dance in the rain. And then there's big stuff on there too. I was born in Germany while my parents were in the army. And so I'd love to go back to Germany. I'd love to experience like Oktoberfest there. I think that would be very cool. There's a bunch of big stuff in there, lots of countries to visit, lots of states to visit. But yeah, this bucket list is a constant reminder of all the things that I wanted to accomplish that I was so afraid that I couldn't. And so it really is just a constant reminder for me to stay grateful and stay in the moment and take advantage of opportunities that cross my path.

SPEAKER_00 24:30

I love that so much because sometimes it's always when's the next, what's the phrase? When's the next shoe gonna drop or something like that, where when's the next thing that's gonna happen? But you you really can't focus on that. You'll live in anxiety spiral. But sometimes it's hard. What is your favorite bucket list item that you have checked off? Oh, that is such a good question. While you are looking, I will say that one of my top, I don't have like an official, I used to do bucket lists all the time, just like random pieces of paper, and I'd write stuff down not last year, but the year before my husband took me to France pretty last minute for a trip like that. Like, hey, we're gonna be going in a few weeks. And I love Monet, like Monet, I've loved Monet since I was young, like 12 for weird reasons. And he took me to Monet's house where the lily garden is. And literally every museum we went to was to see the specific Monet exhibit at that museum. It was like one of those things where, yeah, we did the touristy stuff, but specifically, he geared it specifically to what I like when I when we saw the garden in front of Monet's house, like I'm tears, literal tears on my face. And I was like, okay, this is this is like a moment that I will never, ever, ever forget and am well enough to experience it. So it's like that gratitude there. But okay, did you find one?

SPEAKER_02 25:56

I found a few. That's okay. Please. So I had a few on here that required somebody else to accomplish the bucket list for me. So one of those items was inspire someone unknowingly. And one day at work, very, very long ago, back a couple of jobs ago, one of my colleagues just sent me a random email one day. I was on a weight loss journey and just trying to get more healthy. And she had sent me an email. I printed it, and it says, She left me a little cup with like some fingernail polish, like stickers, like she'd filled up with some some goodies, and she said, I left you a little something on your desk. I know it isn't much. You're doing such a great job working out and eating better. You're motivating others, even if you don't see it yourself. So I wanted to give you a little gift and take your mind off of the sore muscles. P.S. I was gonna put some candy in it, but I thought that better not. That's so sweet. I love that. Yeah, it's just so, and I don't even like I don't know where this beautiful Julie Paul's is right now, but she's in the bucket list. So that was a really fun one because that's something I couldn't accomplish myself. And so that was really fun to come across that. Probably one of my favorite ones being a brunette. I've always, always wanted to be blonde. And so one of my bucket lists was be blonde for three months. So I went on a hair journey and I just I was blonde for like six six months. What by the time I actually got blonde fully blonde, because it took a while, there was a lot of hair damage involved, but I think it was worth it. So being blonde, I was, it is true what they say. You are you are a different person when you've got lighter hair. I'm telling you right now, that was probably the most confident, like sassy personality I've ever adopted. I highly recommend if you've ever wanted to go blonde to do it, it's worth it. And then I think another cool one was as a kid, I saw some, you know, I know everybody's a little on the fence about aliens, but I'm fairly certain I saw some mysterious stuff as a child. That's in the bucket list, and I just wrote out that whole experience. One last one I'll share with you is when I moved here to Conroe as a dancer, I'm just looking to make friends and I'm trying to get into the dance scene and figure out what's going on. And six days after we moved here, there was it just said dance audition in my defense. It just said dance audition. But I show up and it's actually like a full-on musical. So, like they're like, Okay, we're gonna do the singing part. And I'm like, oh no, no, excuse me, sorry, I'm in the wrong room. I sing, but not like with a mic. I don't want others to hear me, just myself is bad enough. So they're like, Well, that's okay. Why are you here? And I said, Well, I'm just here to dance, it's just a dance audition. So I don't know why or how. They still selected me, and I was jungle creature number eight in Sousa Cold the musical. That's me with the bubblegum and the pink hair. I was on all the advertisements. I got to hang out with this cool casting crowd, and I was literally performing like twice a week in Conroe, Texas, the first couple of months of moving here as jungle creature number eight. So it was super fun. So this is how I started book two.

SPEAKER_01 29:06

I am curious when you started doing this, what was like the what were the first things that you wrote down? Because you were young when this started. So I'm curious how what was the first thing you wrote down and kind of how have you evolved? Sounds like a lot of travel. And now that we're you're further along in your life, it helps to have more money to do that.

SPEAKER_02 29:23

So there's having adult money with your like 21-year-old self dreams written down is a lot easier. It's a lot easier these days. I have to be careful, right? Because I don't want to, I don't want to go crazy, but it's hard not to whenever you see an opportunity and you're like, what, that flight's only $500? Like I could, I could sleep on the ground, like I could make it happen. So yeah, I think for me, my first few entries were kind of, I almost want to call them like life basics to a certain degree. Like Marry the Love of My Life was on there, travel to all 50 states. I initially, I was ambitious in the beginning, and I put things that your girl's never gonna do, like

Small Moments And Staying Present

SPEAKER_02 30:04

skydiving. I can barely get on that plane without like I'm not on a plane sober ever, ever. So you're not gonna catch me jumping out of one for sure. So that came off the list eventually. It was put on, but we had a realization talk and we took that one off. Also had traveled to all the countries. And although again, ambitious, I shortened that list down to like 60, which is still a wild number. So got that list narrowed down to like top 60 countries I want to go to. And then I also put a lot of what's interesting is I put a lot of art skills on the list. I really wanted to learn, I want to learn how to play the guitar. I want to learn how to sing so I can show up to an audition and like, oh, you want me to sing? Great, no problem. I'm happy to. So I'd love to take singing lessons. I'd love to learn how to play the piano. I have a lot of those things on there. I want to take a pottery class. So there was a lot of like artistic focus, a lot of career focus too. There was like one of them was have my first gig by 25. And when in that moment, I meant gig as like choreographer manager. And so I've got pictures of me with that dance team that I was telling you guys about under that section because you know, that was I was the manager, I was the choreographer, and I got to lead a dance team for a couple of years. So it's mostly career travel, general life focused, normal life bucket list things like jumping out of airplanes and snorkeling. I did snorkel. I am scared of the ocean, but I did, I did accomplish that one. So that's fun.

SPEAKER_01 31:35

What was the business you started? Is that the business you started? Was the dancing, the dance instructor?

SPEAKER_02 31:40

I decided I did book folding for a little while and I sold folded book art on Etsy for the longest time. And that is what I considered was my first business. My first gig gig is how I discussed like dance jobs. And so my first dance job, my first gig was with that semi-pro dance team back in Oklahoma. Basketball is my favorite sport, so being able to cheer for a basketball team and dance for a basketball team was just super fun. Ah, here's a cute one. Receive flowers at work without having to ask. April 17th, 2013. My now husband sent me some flowers when we first started dating. And this was, I think, I think this was one of the first bucket list items that somebody else had to do for me. And so I made those flowers into this bead that I still wear today. So these flowers right here are in this bead around my neck. So this was a really important one for me. Although it seems very simple, this one was really important to me. And the fact that I married the man is even better, you know? So it's a good story.

SPEAKER_00 32:47

It's a good full circle story all around. Also, highlight for our dear listeners that it does your bucket list doesn't have to be these grand things. Like I mentioned going to France, I'm like almost 50 years old. So it's not like I accomplished this when I was in my 20s or whatever. And I think the the biggest takeaway for me from your bucket list, your bucket books. I feel like it's more than a list is being present in your life, being present for those small moments that make everything better, happier, more joyful, makes you more grateful. Just experiencing your life as it's happening without anticipating what is going to happen and without worrying over what has already happened. So I I love the simplicity and the ease and the small things that you've included in that that are so important to you. I feel like everybody could learn something from that because in this world of like social media and Instagrammable picks and all that stuff, everyone's going for the big thing, but it really is the quiet. If you look at my phone right now, I probably have hundreds of pictures of the sunrises that I have seen. Sunrise is my favorite time of day, and I will go sit outside and watch the sunrise and then proceed to take a dozen pictures of the sunrise every single day that I share with no one because I want to go back and look at the pictures of the sunrise, also because I think I'm gonna actually start painting them, you know, one day. But it's just a little thing that kind of reconnects you with what's happening right now so that you're not so worried about what could happen.

SPEAKER_02 34:30

I'm really glad this is being recorded because I don't think you could have captured any better. I really don't think you could have captured any better why this is so important to me. I think when you're faced with something that feels like the end and it feels like death, genuinely not being dramatic, not being, you know, exaggeratory. Is that a word? Exaggerate? It is now. I made it up. You know, you know, without being any of those things, genuinely sitting in my studio apartment as a very young 21-year-old, terrified that I was dying and just nobody could figure out how, why, when, or where, it does make you grateful for to receive flowers at work. And like it's not your birthday, it's not Valentine's, it's somebody is thinking of you and wanted you to know and let you know in the most romantic way. Those are the things I I wanted to experience that I didn't get a chance to. So I think that's why they're so important to me. I love that you said sunrises and sunsets. That is also on the list. Watch the sunrise over the Grand Canyon. I did that. Yeah, I think I think you could not have captured any better exactly why this means so much to me. Thank you, Robin. I haven't been on social media in five years, and I've had this strong poll to start my own craft DIY channel. Slogan actually, Robin, you kind of hinted at it earlier was my slogan is practice over perfection. Like perfection is never the key. The whole point is just to get started and get the practice in your belt. And creativity is good for all of us. And so I started a little channel this year and put my first video up. I don't know how you guys do this every day. I'm so nervous. I'm so nervous. And I think just because it's been a while, but I but I want to lean into that because I want to do this. It's something that my soul is just like aching to do. So I'm gonna do it and gonna teach people how to fold books and all the other crafty things that I do. But yeah, that's that's the whole point of the of the bucket list is to experience life, not necessarily to experience grand things, because sometimes the most beautiful, amazing grand things are the smallest.

SPEAKER_01 36:38

I definitely think so. I think especially for our folks when like doing a normal thing is can be quite difficult, you know. So I think it's it's lovely to be able to embrace both parts of it, like to celebrate the times when you can go travel and go to 60 countries, but also the times where you wake up without pain or you can go have a leisurely lunch with your friend because you're, you know, your disease is under control and you don't have to worry about running to the bathroom or being in pain. So I think there's there's some real beauty in there. Sarah, I remember when I first met you, and correct me if I'm wrong on this one, but I distinctly remember you came in, I think, and you had wanted to volunteer at the Crohn's and

Positivity Without Toxic Positivity

SPEAKER_01 37:12

Kaleitis Foundation, I think is initially when I'm when you you approached me, and I remember thinking, I don't know what to do with you, but you seem really nice. And then you started working at the Crohn's and Kaleitus Foundation. But I I what I distinctly remember is like you were just so like a ray of sunshine. Like I remember talking to you and thinking, like, wow, like she's so positive. She's like so lovely, and I like want to figure out how I can find something for her to do because she's so lovely. I'm curious, like, you know, and even just talking to you, you you very much exude like positivity, all this sort of stuff. How do you balance that? Because obviously every day must have been a ray of sunshine. So, like, I know you want to exude this positivity, you're looking for the bright side, but there are times when things are challenging. There are times when, like, you know, the end you didn't get to a thing that worked before you for a while. Because the other thing I think there's this also, I don't, Robin and Stacey and I talk every once in a while about toxic positivity. That's not you. I'm not saying that's what you are, but I do think there are times where people might go, I'm just having a shitty day, calm down, you know, kind of thing.

SPEAKER_02 38:08

So a hundred percent. Yeah. I'm glad you brought that up. It's something I forgot to mention that I did want to talk about because yes, I walk a fine line with my IVD message, especially with toxic positivity being now that that has a name, right? For a while we didn't, it didn't really have a name. We knew of people who practiced that, if you will. But now that it has a name, yes. I thank you so much for bringing that up. I think for me, the balance really it is a I don't want anyone to listen to this and just think that I wake up happy every morning. That's certainly not the case. I'm I'm a morning-ish person. If my husband's listening, he's gonna be laughing. I'm a morning-ish person, okay? I I feel best in the morning, I do my best kind of like preparing for the day in the morning, but I have to every day choose to see the bright side. And some days I don't. And that's okay. This IBD journey has so many hills and valleys, and the hills are really, really tall and really great. And the valleys are really, really deep and really, really full of just sorrow and grief and discomfort. And honestly, I think you need to be able to understand that you can have a bad day. Totally fine. You can you can set up a chair, you can have a drink, but you can't stay over the night. You can't stay the night there. You can't. You're you have your own home. You need to go back to your own bed, and you need to be an adult, you need to wake up the next morning and try to make a different decision. But we can't live in that zone. Anytime I have lived in that zone, and I have many times, anytime I have lived in that mentality, those have been the worst years as far as my mental health, as far as finding the light in everyday life. And I think the thing that really, really helps me focus on choosing good every day is remembering all the bad days genuinely and going, ooh, okay. My dog also woke me up at two o'clock in the morning. Today's rough. I need coffee, I need something to eat, and we're not gonna let my lack of sleep dictate how my day goes. So I do what I want in that moment, which this morning was sleeping in and making a very large, large coffee when I decided to finally roll out of bed. And then slowly just making sure that mentally I'm doing my best to choose the bright side. I don't always choose it. I don't always choose it because we all like to wallow sometimes. And wallowing is good for you sometimes to a certain degree. If you don't get those feelings out, they stay bottled up, they come out in other facets, and you don't want that to happen. So just making sure that doing my best to choose that side as much as I can. And when I can't, on those hard days, because we all have them, making sure that I don't live there is is key for me. I just camp out for a little bit.

SPEAKER_00 41:05

I love that so much. I used to tell my girls to set a time for yourself. Like when you have, I used to say emotions that you don't want to feel, like anger or hurt or sorrow or whatever it is, depression, like if you're feeling depressed, whatever, anxiety. Give yourself, like it could be 30 minutes, it could be five days, but give yourself a time limit limit and like set a little internal alarm and say, okay, I'm gonna wallow in this emotion for 48 hours. And then when 48 hours is up, time to move on. So it's kind of like very similar to what you said, but just feel it for however long that you feel like it deserves, but don't give it an another moment of your time past that.

SPEAKER_02 41:42

Yeah. And I can't stress enough that I have done a lot of therapy. I've had to do a lot of therapy to get here. This disease really affects you on so many levels. And I genuinely feel like a lot of my mental health struggles have come from being dismissed as a child, not being believed my whole life, then finally being believed. And now I have all these issues. And anytime I go to the doctor, I don't care which doctor it is, it could be my GI, it could be my PCP, they still don't believe you. Like nobody, they still don't believe you. You have to come with proof. You got to come with your binder or however you set yourself up for success. And that is incredibly frustrating. So, yes, living with those emotions are necessary to get over it and to move past it, but I can't recommend therapy enough. I cannot recommend, I know we hear it all the time and it seems silly, but I'm telling you, some of the best therapy I've ever done is step outside. I have stepped away from my screen in the middle of the workday on so many occasions, and I'm like, oh, you know what? It's floor time and vitamin D time. And I go lay out on the concrete, I soak up some sun rays, the dogs lick my face. I just lay there and I just take a minute to be out in nature and realize that life in general is not that serious, and it seems like it, but it isn't. Everybody is only focused on themselves, they're not focused on you. Stop trying to compare yourself. It doesn't matter. That one email that the coworker sent is not that big of a deal. So I think there's a lot of therapy that has gone into my happiness, honestly. Everything plays a role, I guess, is what I'm trying to say in how I became the person that I am today. But I'm certainly not perfect, and I'm really, really glad that you brought that up because I certainly don't want the listeners to think that like this girl has Crohn's and she's just happy all the time. That is not true. Certainly not true. I've got bad days. I have many months in a row struggled, and it's just a matter of what do you do when you crawl out of that and how do you how do you get back on track?

SPEAKER_01 43:46

I I love that you brought up therapy. It's hard work, it's real hard work, especially when you're real low.

SPEAKER_02 43:52

I mean, the amount of self help books that I've read, the journaling that I've done, I feel like I've tried every single I forget what they're called, behavior therapy, different uh coping coping mechanisms. I swear I've tried all of them. I listen to classical music all the time. That really helps kind of slow down the brain. So yeah, I've tried everything and the things that work for me best are outside time, classical music, and honestly staying off of social media. The last five years have really, really helped me, which I think is why I'm so nervous about starting my channel is like being back online, not nervous about the content, not nervous about what I'm putting out, more nervous about my own mental health and making sure that I'm setting up appropriate boundaries along the way as I embark on this new journey.

SPEAKER_00 44:36

Sarah, it has been so lovely catching up with you, hearing this part of your story. I didn't expect to cry immediately and then like be inspired also at like in the same moment. You had the tears going like right from the beginning. But unfortunately, it is time for me to ask you the last question. What is the one thing

Remission Guilt And The Push For A Cure

SPEAKER_00 44:56

that you want the IBD community to know?

SPEAKER_02 44:58

I think the one thing I'd love everyone to know here in the IBD community is that everyone's journey is unique. Comparison is the thief of joy, which is honestly probably the biggest issue with social media is you're just bombarded with comparison and comparing your life to others. So do not compare your IBD experience to mine or to Robin's or to any other IBD patient that you meet. Your experience is your own and it's for a reason. Do your best to be grateful for every part of this experience because you will look back and you will say, I've come such a long way. I can't believe I used to not be able to get out of bed. Look at me walking a lap at the park. You're gonna look back on even these terrible moments and you will be grateful for them. You will be grateful because in that moment, in that joyous moment that is sure to come your way, I know of it. You will be so grateful that you are feeling better and that you are on this new part of your journey. I want to also mention that remission comes with its own challenges. I now am completely flooded with guilt at IBD event because I am hearing all these sad stories of people who are currently going through these awful moments that I know I've experienced, but now that I'm no longer experiencing that, I cannot tell you the amount of guilt that I feel at these events. So, yes, remission is lovely. Do not expect it to be perfect. You are still gonna have battles with this disease. You are going to feel better and you are going to feel like you can accomplish amazing things and you certainly can. But I just want to make sure you know that there will be other challenges that come with remission until a cure is found. So be patient with yourself, be kind to yourself and experience the journey as it goes and just be hopeful for the future.

SPEAKER_01 46:56

Oh gosh, Robin was nodding vigorously when you were talking about feeling guilt. I think that's so fascinating because I also look at it and go, but you're you're somebody they can look to with hope.

SPEAKER_02 47:06

Which yes, but then it's almost, I don't want to say that they when I'm talking to patients who are in the middle of a really bad flare, they're first, how did you get in remission? How did you get there? You know, and it's it's a matter of you gotta have a community behind you. And not everybody has a community. That's a big piece of it. You gotta have people around you. It doesn't have to be family, it can be friends, it could be yourself, but you have to be an advocate that you want to get better. That's step one. Then you gotta listen to your doctors. You gotta hope. You have to hope that the medication works. There's a chance that it may not. You gotta have a resilient mindset, maintain moving on to that next step. There's so many facets that go into remission. And so, and then by the time you get there, right, I'm still taking shots twice a week. I still have vitamin deficiency issues, I'm still in the bathroom six times a day. I'm just not in pain. I just don't have active inflammation. So I'm in remission. That's standard. And so I think that's why I've been such an advocate now that I'm in remission that like a cure is the goal. Remission's nice, but a cure is the goal. And ultimately that's kind of my focus now is working, working towards promoting that. But yeah, remission comes with its own challenges, and it's hard to look someone in the face who's going through the worst time of their life, and you know that they are, you know how much pain they're in, and you know that there's nothing you can do for them. Obviously, that's how all of our family and friends have felt during our own journeys. And so it's a strange burden to bear.

SPEAKER_01 48:33

Sarah, so, so, so lovely to talk to

Final Takeaways And Listener CTA

SPEAKER_01 48:36

you. Like Robin said, you know, this is uh great for us to be able to hear your story instead of just the little bit that we got from you in the past. So thank you so much for coming on the show. We really, really appreciate it. And thank you everybody else for listening. And cheers, everybody.

SPEAKER_00 48:50

Cheers, everybody.

SPEAKER_01 48:51

Thanks for having me.

SPEAKER_02 48:55

Hello everyone. This is Sarah Herring. And if you enjoyed this episode, please rate, review, subscribe, and share with a friend. See you on the next one.