A Chat with My Kids About THEIR Experiences with an Autoimmune Mom

Stella & Georgia: Okay. This is going to be next level impossible with this one. Today we're doing something a little bit different and we're going to interview my girls, so we'd like to keep your face in the shot. Why don't we scoot over a little. About their experiences having a mother with autoimmune disease, rheumatoid arthritis and

In-person participant 1: Okay. This is going to be next level impossible with this one. Today we're doing something a little bit different and we're going to interview my girls, so we'd like to keep your face in the shot. Why don't we scoot over a little. About their experiences having a mother with autoimmune disease, rheumatoid arthritis and

Stella & Georgia: A ⁓ little intro into my girls. This is my oldest Stella. She's 14. She's in the eighth grade and she's a pretty amazing kid. ⁓ girl loves to read. ⁓ has a giving and ⁓ serving heart. ⁓ loves to volunteer and she's volunteering with a UTEN softball team right now. She's helping assistant coach them. She's done things in our church before. ⁓ fed the homeless. We all have done a lot of this together but ⁓

In-person participant 1: A ⁓ little intro into my girls. This is my oldest Stella. She's 14. She's in the eighth grade and she's a pretty amazing kid. ⁓ girl loves to read. ⁓ has a giving and ⁓ serving heart. ⁓ loves to volunteer and she's volunteering with a UTEN softball team right now. She's helping assistant coach them. She's done things in our church before. ⁓ fed the homeless. We all have done a lot of this together but ⁓

Stella & Georgia: She definitely has a serving heart and ⁓ I love her to death. And she's got this amazing hair, both of these girls. Just wake up with hair like this. I know, I don't have that. ⁓ And Stella is ⁓ very academic. Both my girls are straight A students, but she is obsessed in all the best ways with astronomy and reading. And she wants to work for NASA someday or SpaceX or something along those lines, right?

In-person participant 1: She definitely has a serving heart and ⁓ I love her to death. And she's got this amazing hair, both of these girls. Just wake up with hair like this. I know, I don't have that. ⁓ And Stella is ⁓ very academic. Both my girls are straight A students, but she is obsessed in all the best ways with astronomy and reading. And she wants to work for NASA someday or SpaceX or something along those lines, right?

Stella & Georgia: And then Georgia is, she'll be 13 next week or in 10 days or something like that. six, 14. Nine. Probably won't be working for NASA, but she's very smart. gets straight A's. ⁓ she's the athlete in the family. ⁓ although Stella plays softball too, but Georgia does competitive softball and she's working really hard at that. She also has a giving, serving heart. She loves to volunteer and loves the little people.

In-person participant 1: And then Georgia is, she'll be 13 next week or in 10 days or something like that. six, 14. Nine. Probably won't be working for NASA, but she's very smart. gets straight A's. ⁓ she's the athlete in the family. ⁓ although Stella plays softball too, but Georgia does competitive softball and she's working really hard at that. She also has a giving, serving heart. She loves to volunteer and loves the little people.

Stella & Georgia: ⁓ Babysitting they both dogg, they be they both babysit and they both dog sit for neighbors and Yeah, she's the jokester of the family. So that's why I said we'll be lucky if we get through this But yeah, those are my girls and She's in seventh grade. They both go to same school. So next year style local high school and we'll be broken up

In-person participant 1: ⁓ Babysitting they both dogg, they be they both babysit and they both dog sit for neighbors and Yeah, she's the jokester of the family. So that's why I said we'll be lucky if we get through this But yeah, those are my girls and She's in seventh grade. They both go to same school. So next year style local high school and we'll be broken up

Stella & Georgia: sad or stressed? Is it all so sad? ⁓ okay. All right, girls. So we have, I have questions that I'm to ask them, but I always like these conversations to be organic. So if it leads us in a different direction, that's totally fine. Is there anything you want to say before we start?

In-person participant 1: sad or stressed? Is it all so sad? ⁓ okay. All right, girls. So we have, I have questions that I'm to ask them, but I always like these conversations to be organic. So if it leads us in a different direction, that's totally fine. Is there anything you want to say before we start?

Stella & Georgia: I don't really know how to do this. I'm just... ⁓ you haven't been on a podcast before? No, it's new one for me. Alright. Wait, where's your microphone? Well, I didn't bring the microphone out. We'll see. I don't think we need it. I don't usually use it all that often. Most people don't watch this on YouTube. They watch it... Most of my views are through Apple podcasts and Spotify, but there are some people who watch it on YouTube, so...

In-person participant 1: I don't really know how to do this. I'm just... ⁓ you haven't been on a podcast before? No, it's new one for me. Alright. Wait, where's your microphone? Well, I didn't bring the microphone out. We'll see. I don't think we need it. I don't usually use it all that often. Most people don't watch this on YouTube. They watch it... Most of my views are through Apple podcasts and Spotify, but there are some people who watch it on YouTube, so...

Stella & Georgia: Some people will see it, some people won't. Won't, will hear it, but not see it. Okay. Okay. So my first question. When was the first thing that made you realize, if you had to think back, that I have some kind of a health condition, that I was different than all the others? So I always kind of knew, but I don't think I understood really what it was. But when like before you got your knee surgery, whenever you were driving, sometimes you would just like...

In-person participant 1: Some people will see it, some people won't. Won't, will hear it, but not see it. Okay. Okay. So my first question. When was the first thing that made you realize, if you had to think back, that I have some kind of a health condition, that I was different than all the others? So I always kind of knew, but I don't think I understood really what it was. But when like before you got your knee surgery, whenever you were driving, sometimes you would just like...

Stella & Georgia: yell or something and then your knee would get stuck and it was like scary and then also when you got your knee surgery. Yeah for me like I knew and I understood you had problems but when you were like my dad was calling the doctor when you had any surgery and he was saying that you're ⁓ and you were and they asked you on a scale of one to ten and you said like nine I knew that's when it was bad because you are never that high ever and that's when I realized that like I don't know just something about you putting it on that level.

In-person participant 1: yell or something and then your knee would get stuck and it was like scary and then also when you got your knee surgery. Yeah for me like I knew and I understood you had problems but when you were like my dad was calling the doctor when you had any surgery and he was saying that you're ⁓ and you were and they asked you on a scale of one to ten and you said like nine I knew that's when it was bad because you are never that high ever and that's when I realized that like I don't know just something about you putting it on that level.

Stella & Georgia: Made it feel weird. Okay, so I had my right knee replaced two years, it'll be two years in September. So I was 45, they were 12 and 11 at the time. And I was not prepared for how painful that was gonna be. So I did not prepare them or my husband or my mother came to help because it was my right knee and I couldn't drive. So that was pretty bad. And I can see why you guys would say that. But you don't have any memories of like when you were younger. I have one. Okay.

In-person participant 1: Made it feel weird. Okay, so I had my right knee replaced two years, it'll be two years in September. So I was 45, they were 12 and 11 at the time. And I was not prepared for how painful that was gonna be. So I did not prepare them or my husband or my mother came to help because it was my right knee and I couldn't drive. So that was pretty bad. And I can see why you guys would say that. But you don't have any memories of like when you were younger. I have one. Okay.

Stella & Georgia: So I know like we talked about this a little while ago, one time we went to this place, I don't really remember where we were, but it was with all these like, it was like this movie or like this comedy thing or whatever, and all the mothers were sitting on these blankets with their little kids and you were like, this is why I don't like to come to these things, it makes me feel bad about what I can't do. Because I couldn't get on the ground. Yeah. That was when you were in your worst, think. you were, I think I was like eight. Like eight.

In-person participant 1: So I know like we talked about this a little while ago, one time we went to this place, I don't really remember where we were, but it was with all these like, it was like this movie or like this comedy thing or whatever, and all the mothers were sitting on these blankets with their little kids and you were like, this is why I don't like to come to these things, it makes me feel bad about what I can't do. Because I couldn't get on the ground. Yeah. That was when you were in your worst, think. you were, I think I was like eight. Like eight.

Stella & Georgia: worst of the years we've lived here obviously you were not like when you moved here you got significantly better but yeah that was i remember that too that was that was hard that was when we lived here i so yeah i think we like went somewhere though i feel like it might have been like savannah and i don't think it was here oh i know what you're talking about yeah was it in um florida maybe either way it doesn't really matter so do you remember what you thought back then i was just sad and pretty sure i almost started to cry i almost did too actually

In-person participant 1: worst of the years we've lived here obviously you were not like when you moved here you got significantly better but yeah that was i remember that too that was that was hard that was when we lived here i so yeah i think we like went somewhere though i feel like it might have been like savannah and i don't think it was here oh i know what you're talking about yeah was it in um florida maybe either way it doesn't really matter so do you remember what you thought back then i was just sad and pretty sure i almost started to cry i almost did too actually

Stella & Georgia: Well, for the record, Stella will cry in this podcast at some point. She is an emotional person. I am not. She's crying right now. It's okay. It's gonna happen. I'm just gonna brace everybody for it. It's okay. She's good. We're good. And it's okay if you get emotional. Yeah. Yeah. It's who she is. So we give her the space to be that. What do you think it means now? Like if you thought back then it was sad, what do you think now?

In-person participant 1: Well, for the record, Stella will cry in this podcast at some point. She is an emotional person. I am not. She's crying right now. It's okay. It's gonna happen. I'm just gonna brace everybody for it. It's okay. She's good. We're good. And it's okay if you get emotional. Yeah. Yeah. It's who she is. So we give her the space to be that. What do you think it means now? Like if you thought back then it was sad, what do you think now?

Stella & Georgia: Honestly, once you got that medicine that started working for you, I don't really feel like you can do anything. There's not many things that another parent would be able to do that you can't except for lines. I think it's like the main thing, like waiting in a line, like you've talked about that before. yeah. Because obviously we don't do that, so obviously I don't know how you would... Like we don't go to Disney or anything, partly because I just, I'm not ⁓ a crowd person.

In-person participant 1: Honestly, once you got that medicine that started working for you, I don't really feel like you can do anything. There's not many things that another parent would be able to do that you can't except for lines. I think it's like the main thing, like waiting in a line, like you've talked about that before. yeah. Because obviously we don't do that, so obviously I don't know how you would... Like we don't go to Disney or anything, partly because I just, I'm not ⁓ a crowd person.

Stella & Georgia: in general but like standing in line all day is not something that would give me joy despite all that kind of money it's just it seems a little bit outside of the outside of that though i don't really feel like there's anything that's different anymore right now because i'm in place yeah you're in a good place as of this moment yeah when we were younger that wasn't the case do you remember when we lived in massachusetts how i was i don't remember you being tired i remember you being very

In-person participant 1: in general but like standing in line all day is not something that would give me joy despite all that kind of money it's just it seems a little bit outside of the outside of that though i don't really feel like there's anything that's different anymore right now because i'm in place yeah you're in a good place as of this moment yeah when we were younger that wasn't the case do you remember when we lived in massachusetts how i was i don't remember you being tired i remember you being very

Stella & Georgia: don't remember the details of it. Like we've talked about my first memory is not... Yeah, well we moved here when you were seven so we're asking you to... what was your first memory? The one where we falling off the right-hand-leaning seat.

In-person participant 1: don't remember the details of it. Like we've talked about my first memory is not... Yeah, well we moved here when you were seven, so we're asking you to... what was your first memory? The one where we falling off the right-hand-leaning seat.

Stella & Georgia: Oh yeah, she fell off the chair. Either way. And then her sister was like, oh that looks fun, so I'll dive off the chair too. In a white tablecloth. Which I think just shows, I think that just shows how like, used to you not being able to do things that none of it stood out particularly to me. I think that's what it means. Yeah. You were also young and didn't realize probably like, this is not normal. That's what I mean. That's why I don't have any good memories of it, because it was so normal.

In-person participant 1: Oh yeah, she fell off the chair. Either way. And then her sister was like, oh that looks fun, so I'll dive off the chair too. In a white tablecloth. Which I think just shows, I think that just shows how like, used to you not being able to do things that none of it stood out particularly to me. I think that's what it means. Yeah. You were also young and didn't realize probably like, this is not normal. That's what I mean. That's why I don't have any good memories of it, because it was so normal.

Stella & Georgia: Yeah, it was just your normal and that's all that mattered. What about you? What was the question again? I mean, we're gonna have to make a compilation of asking questions again. It means now, like, I don't know, it's just normal. It's better because you like... Because I feel better. Yeah. What about...

In-person participant 1: Yeah, it was just your normal and that's all that mattered. What about you? What was the question again? I mean, we're gonna have to make a compilation of asking questions again. It means now, like, I don't know, it's just normal. It's better because you like... Because I feel better. Yeah. What about...

Stella & Georgia: There are times when I can tell that I'm very, like I still get very fatigued. I get very tired and I need to rest a lot. I know that that- Oh my gosh. I feel like I'm missing something. I am very active. Oh, now I get it. And when she's tired, you don't always recognize that she's tired. Well, she's sleeping in bed.

In-person participant 1: There are times when I can tell that I'm very, like I still get very fatigued. I get very tired and I need to rest a lot. I know that that- Oh my gosh. I feel like I'm missing something. I am very active. Oh, now I get it. And when she's tired, you don't always recognize that she's tired. Well, she's sleeping in bed.

Stella & Georgia: then I have nothing to do and that's great but it's okay. But I'm also not your cruise ship director and I'm not in charge of- know but like how am supposed to drive somewhere? Well it's called the bike, Georgia. Well I can't bike Nowhere you're going to drive you're going- Nowhere you're going to bike you would need to drive to. Everywhere we- everywhere is in the right distance. Okay let's- let's- move on. Let's move on. Alright, what's something that's been hard about having a mom with a chronic illness?

In-person participant 1: then I have nothing to do and that's great but it's okay. But I'm also not your cruise ship director and I'm not in charge of- know but like how am supposed to drive somewhere? Well it's called the bike, Georgia. Well I can't bike Nowhere you're going to drive you're going- Nowhere you're going to bike you would need to drive to. Everywhere we- everywhere is in the right distance. Okay let's- let's- move on. Let's move on. Alright, what's something that's been hard about having a mom with a chronic illness?

Stella & Georgia: Always tired. That's... Oh, yeah, cause I always... When you do get tired... tired. When you do get... When you do get tired, it's...

In-person participant 1: Always tired. That's... Oh, yeah, cause I always... When you do get tired... tired. When you do get... When you do get tired, it's...

Stella & Georgia: I always feel like I can't bother you. Like I don't think Georgia ever has had this train of thoughts. Oh my gosh, why are we all just like, when you get tired and you're like, you know when you're limping around once in a while, I just feel like I can't.

In-person participant 1: I always feel like I can't bother you. Like I don't think Georgia ever has had this train of thoughts. Oh my gosh, why are we all just like, when you get tired and you're like, you know when you're limping around once in a while, I just feel like I can't.

Stella & Georgia: I feel like it's not fair to ask something of you. Okay, but you know that if you need something, you can ask for it. If it was something I needed, I wouldn't hesitate, but if it's something kind of stupid, I would not. If I talk to about the books, just lie. Sorry, that was not nice. That was not nice. Use kind words, I'm sorry. ⁓

In-person participant 1: I feel like it's not fair to ask something of you. Okay, but you know that if you need something, you can ask for it. If it was something I needed, I wouldn't hesitate, but if it's something kind of stupid, I would not. If I talk to about the books, just lie. Sorry, that was not nice. That was not nice. Use kind words, I'm sorry. ⁓

Stella & Georgia: But you, we talked about this a little bit, so I think what you're trying to say is like, some people like to ask to go to get ice cream very much. Three times a day. Yes. And I like to have my knee up here. some people won't even ask if she can have dinner if I don't feel good. Because that's, that's, that's not fair. It's accurate though.

In-person participant 1: But you, we talked about this a little bit, so I think what you're trying to say is like, some people like to ask to go to get ice cream very much. Three times a day. Yes. And I like to have my knee up here. some people won't even ask if she can have dinner if I don't feel good. Because that's, that's, that's not fair. It's accurate though.

Stella & Georgia: It's just a different personality. But you need food. I'm aware. I'm aware. There's no... We're not ganging up on you, Georgia. I'm just saying... Every kid has a different personality. yours is not any worse or right or wrong. No one's better than the other person here. It's just that Stella is a little bit more empathic than you are. And that's a very hard thing for people her age to deal with, being super empathic.

In-person participant 1: It's just a different personality. But you need food. I'm aware. I'm aware. There's no... We're not ganging up on you, Georgia. I'm just saying... Every kid has a different personality. yours is not any worse or right or wrong. No one's better than the other person here. It's just that Stella is a little bit more empathic than you are. And that's a very hard thing for people her age to deal with, being super empathic.

Stella & Georgia: Most kids are more like, even you that don't feel that other people's pain like that. Even through all those guidance counselors lessons, I still don't know the difference between empathy and sympathy. We'll talk about that later. That's an episode for another day. Okay. Okay. All right.

In-person participant 1: Most kids are more like, even you that don't feel that other people's pain like that. Even through all those guidance counselors lessons, I still don't know the difference between empathy and sympathy. We'll talk about that later. That's an episode for another day. Okay. Okay. All right.

Stella & Georgia: it ever made you feel different than any other kids? Like think back the whole time. ⁓ you feel any different? feel like we're, yeah. ⁓ I feel like we're just weird. ⁓ please Like, ⁓ don't ⁓ microwaves. ⁓ don't watch certain shows. We don't eat gluten. ⁓ don't like go to Disneyland or whatever. ⁓ don't ⁓ other things.

In-person participant 1: it ever made you feel different than any other kids? Like think back the whole time. ⁓ you feel any different? feel like we're, yeah. ⁓ I feel like we're just weird. ⁓ please Like, ⁓ don't ⁓ microwaves. ⁓ don't watch certain shows. We don't eat gluten. ⁓ don't like go to Disneyland or whatever. ⁓ don't ⁓ other things.

Stella & Georgia: microwave thing really irritates you, but I read this whole study about how it changes your food on a molecular level ⁓ there's really no need. You can just heat up something really quick on the stove. So we haven't had a microwave in probably... Since we moved here. Also... ⁓ had one in Marshall, but we never used it. So probably 10 years. Also when we... ⁓ you stop that? you... I'm sorry. When you're microwaving something, the things that are made to be microwavable ⁓ always have gluten in them from what I've learned. And we never really used it. So... Yeah.

In-person participant 1: microwave thing really irritates you, but I read this whole study about how it changes your food on a molecular level ⁓ there's really no need. You can just heat up something really quick on the stove. So we haven't had a microwave in probably... Since we moved here. Also... ⁓ had one in Marshall, but we never used it. So probably 10 years. Also when we... ⁓ you stop that? you... I'm sorry. When you're microwaving something, the things that are made to be microwavable ⁓ always have gluten in them from what I've learned. And we never really used it. So... Yeah.

Stella & Georgia: We're all gluten free because we have, I have celiac, but they have intolerances where they actually are able to now feel when they have it. One has a GI issue and the other one gets like migraines and skin problems. And also it was broken. The microwave? Yeah, when here was broken. in the chair, but that's fine. We shook it out and we did not have one.

In-person participant 1: We're all gluten free because we have, I have celiac, but they have intolerances where they actually are able to now feel when they have it. One has a GI issue and the other one gets like migraines and skin problems. And also it was broken. The microwave? Yeah, when here was broken. in the chair, but that's fine. We shook it out and we did not have one.

Stella & Georgia: But that's really the only way you feel different. Yeah, pretty much. For me, it's not that I feel... Well, I know that I'm different from other kids for reasons that have nothing to do with you. But I do... When it comes to like the whole theme park thing, it's not that... It's not that the fact that I haven't been to any is what makes me different. It's the fact that I have to explain it. It's like, yeah, I haven't been to any because my mom kind of literally can't.

In-person participant 1: But that's really the only way you feel different. Yeah, pretty much. For me, it's not that I feel, well, I know that I'm different from other kids for reasons that have nothing to do with you. But I do, when it comes to like the whole theme park thing, it's not that, it's not that the fact that I haven't been to any is what makes me different. It's the fact that I have to explain it. It's like, yeah, I haven't been to any because my mom kind of literally can't.

Stella & Georgia: It's a different scenario than what I We did take you to someone when you were little. And now... I remember going on long and...

In-person participant 1: It's a different scenario than what I We did take you to someone when you were little. And now... I remember going on long and...

Stella & Georgia: And also like just so we're all on the same page here, I never went as a kid either I mean So I think that's part of the problem is that I never went as a kid So I don't feel the need to bring you like it's a right like it's not to me. It's not a I have to check this box to make my kids have a good childhood thing and I know a lot of people love Disney and they love bringing their kids and they go every single year and that's great or whatever

In-person participant 1: And also like just so we're all on the same page here, I never went as a kid either I mean So I think that's part of the problem is that I never went as a kid So I don't feel the need to bring you like it's a right like it's not to me. It's not a I have to check this box to make my kids have a good childhood thing and I know a lot of people love Disney and they love bringing their kids and they go every single year and that's great or whatever

Stella & Georgia: theme park it is, but it's just right now it's hard for us. If I could buy it out for the day and not have any lines and no people. And a couple thousand dollars. A couple million dollars. For school we have a trip to Carowinds and I'm going on my birthday. The Carowinds trip was fun. don't think I did as many rides as I should have because I had no idea what to expect. I also have a fear of falling. I think we're talking about roller coasters too much. Let's wrap this up.

In-person participant 1: theme park it is, but it's just right now it's hard for us. If I could buy it out for the day and not have any lines and no people. And a couple thousand dollars. A couple million dollars. For school we have a trip to Carowinds and I'm going on my birthday. The Carowinds trip was fun. don't think I did as many rides as I should have because I had no idea what to expect. I also have a fear of falling. I think we're talking to the roller coasters too much. Let's wrap this up.

Stella & Georgia: What about your friends? Do they know or do they have an understanding? My friends know. My friends, yeah. Only like my best friend really I guess. You can't cover your mouth. I'm sorry. Only my best friend really. But I still don't think she really understands it. I remember one time I was biking with two of my friends and we were talking about like Super Bowl. It was a Super Bowl Sunday. And I was like...

In-person participant 1: What about your friends? Do they know or do they have an understanding? My friends know. My friends, yeah. Only like my best friend really I guess. You can't cover your mouth. I'm sorry. Only my best friend really. But I still don't think she really understands it. I remember one time I was biking with two of my friends and we were talking about like Super Bowl. It was a Super Bowl Sunday. And I was like...

Stella & Georgia: My mom's probably been sleeping, or my mom's probably in the sleep, she hasn't slept in the past week and they're like, what? And I was like, yeah. And they were like, what? And I was like, yeah, sometimes I struggle with sleep. My friends, I have a smaller friend group than she does, they're just closer so all of them kind of understand. One of my friends, her mother is a PA.

In-person participant 1: My mom's probably been sleeping, or my mom's probably in the sleep, she hasn't slept in the past week and they're like, what? And I was like, yeah. And they were like, what? And I was like, yeah, sometimes I struggle with sleep. My friends, I have a smaller friend group than she does, they're just closer so all of them kind of understand. One of my friends, her mother is a PA.

Stella & Georgia: So she understands that kind of stuff because she's been exposed to it. And my other friend is diabetes. So she understands that there's medical things that make it different. And then my third friend, she doesn't need to understand because she has not done any of these things either because she's... Yeah, well... Because she's hands-leaved. But... They're very lucky if they don't know anyone or live with anyone close or themselves. Like your friend with diabetes, that's not an easy thing either.

In-person participant 1: So she understands that kind of stuff because she's been exposed to it. And my other friend is diabetes. So she understands that there's medical things that make it different. And then my third friend, she doesn't need to understand because she has not done any of these things either because she's... Yeah, well... Because she's hands-leaved. But... They're very lucky if they don't know anyone or live with anyone close or themselves. Like your friend with diabetes, that's not an easy thing either.

Stella & Georgia: But it's not something you guys talk about with your friends often or it is something you talk about with Well, if they're like, we should go... Like if anybody asks, if anybody was to randomly ask me, what's your favorite roller coaster at Disney? I would be like, Psych, I've never been. And then everybody would yell at me and I have to be like, my mom has a medical disease. It makes it lot more difficult for us to actually go there. it sound weird. That makes it sound like... And also we hate lines. We don't like lines. This is not a thing. Well, I mean, I don't like lines. I hate lines. I absolutely hate You don't have to hate them because I do.

In-person participant 1: But it's not something you guys talk about with your friends often or it is something you talk about with Well, if they're like, we should go... Like if anybody asks, if anybody was to randomly ask me, what's your favorite roller coaster at Disney? I would be like, Psych, I've never been. And then everybody would yell at me and I have to be like, my mom has a medical disease. It makes it lot more difficult for us to actually go there. it sound weird. That makes it sound like... And also we hate lines. We don't like lines. This is not a thing. Well, I mean, I don't like lines. I hate lines. I absolutely hate You don't have to hate them because I do.

Stella & Georgia: If I'm with my friends, it's fine. You can just chit chat. Chit chat with the bus driver. Sorry, I shouldn't have said that. I think Stella, you have more deep emotional conversations with your friends and Georgia, you are more like, what are we doing? Let's have fun. you know. Yeah. I think, yeah. But that's interesting. Let's see, where are we going now?

In-person participant 1: If I'm with my friends, it's fine. You can just chit chat. Chit chat with the bus driver. Sorry, I shouldn't have said that. I think Stella, you have more deep emotional conversations with your friends and Georgia, you are more like, what are we doing? Let's have fun. you know. Yeah. I think, yeah. But that's interesting. Let's see, where are we going now?

Stella & Georgia: Is there anything about me having autoimmune disease that you think has made you stronger or not better, but wiser or something like that? think it from an empathetic level, has exposed me to yeah, the world isn't all great. the knowing that

In-person participant 1: Is there anything about me having autoimmune disease that you think has made you stronger or not better, but wiser or something like that? think it from an empathetic level, has exposed me to yeah, the world isn't all great. the knowing that

Stella & Georgia: that people go through things like you do every day has definitely helped me like, definitely helped that sink in. But it's also helped me been very grateful for the world we live in because you know, people with RA, 100 years ago, now have lived till like a year after they were diagnosed. Yes. We are lucky that we have medications and treatment plans that are helping because you're right. Yeah. Twenty, twenty five years ago, was a much different story. What about you?

In-person participant 1: that people go through things like you do every day has definitely helped me like, definitely helped that sink in. But it's also helped me been very grateful for the world we live in because you know, people with RA, 100 years ago, now have lived till like a year after they were diagnosed. Yes. We are lucky that we have medications and treatment plans that are helping because you're right. Yeah. Twenty, twenty five years ago, was a much different story. What about you?

Stella & Georgia: I don't I guess what's that listed to but like Mostly like you give really really good advice. That's true. You give really really good advice. Yeah, so it's more like you Got stronger like and then you like how me I know deep Georgia

In-person participant 1: I don't I guess what's that listed to but like Mostly like you give really really good advice. That's true. You give really really good advice. Yeah, so it's more like you Got stronger like and then you like how me I know deep Georgia

Stella & Georgia: That was good. The highlight of my day.

In-person participant 1: That was good. The highlight of my day.

Stella & Georgia: I'm checking about... We can come back to it.

In-person participant 1: I'm checking about... We can come back to it.

Stella & Georgia: I'm gonna figure.

In-person participant 1: I'm gonna figure.

Stella & Georgia: And you think that I give good advice because I have had this extra layer of life I've lived. Is that what you're trying to say? Yeah, that's the other thing. I feel like because of that you have like a slightly... Thanks, mom. Because of that you have a slightly different parenting style than a lot of parents and I think that's actually very beneficial for me in Georgia. sometimes I think about like you hear about like helicopter parents and parents who don't really care what their kids do and they're like somewhere in between.

In-person participant 1: And you think that I give good advice because I have had this extra layer of life I've lived. Is that what you're trying to say? Yeah, that's the other thing. I feel like because of that you have like a slightly... Thanks, mom. Because of that you have a slightly different parenting style than a lot of parents and I think that's actually very beneficial for me in Georgia. sometimes I think about like you hear about like helicopter parents and parents who don't really care what their kids do and they're like somewhere in between.

Stella & Georgia: And it's like nice to know that you're gonna let me do what I want to do and you're only gonna stop it if it's getting to a point where this is no longer healthy or dangerous and then I can and I'm very comfortable talking to you because I know you've been where I've been and I don't feel like many kids get that experience. Well, not as many. Hopefully they do but yeah. I love you guys. Awwww. I love you too.

In-person participant 1: And it's like nice to know that you're gonna let me do what I want to do and you're only gonna stop it if it's getting to a point where this is no longer healthy or dangerous and then I can and I'm very comfortable talking to you because I know you've been where I've been and I don't feel like many kids get that experience. Well, not as many. Hopefully they do but yeah. I love you guys. Awwww. I love you too.

Stella & Georgia: Alright, let's get into some honest questions and there's no wrong answers and I'm not going to be offended by anything you say. Okay? Stop that. You guys are kicking the... You're wiggling the table on us. Making everything... Are there times you're frustrated with my health? We can't do anything because you're too shy. You get frustrated. Like, not trying to be mean or anything. No. That's what I said. There's no... You're not going to hurt my feelings.

In-person participant 1: Alright, let's get into some honest questions and there's no wrong answers and I'm not going to be offended by anything you say. Okay? Stop that. You guys are kicking the... You're wiggling the table on us. Making everything... Are there times you're frustrated with my health? We can't do anything because you're too shy. You get frustrated. Like, not trying to be mean or anything. No. That's what I said. There's no... You're not going to hurt my feelings.

Stella & Georgia: you got your knee surgery yeah it was like obviously we weren't going to try and do anything like towards the beginning of it but then towards the end when you were like getting better it was just like like five months of just doing that

In-person participant 1: you got your knee surgery yeah it was like obviously we weren't going to try and do anything like towards the beginning of it but then towards the end when you were like getting better it was just like like five months of just doing that

Stella & Georgia: Five months. Well, it was a lot of rehab. No, because I had it in September and I finished my rehab at Thanksgiving, the week of Thanksgiving. So that was really quick because most people who get knee replacements, well, they're a lot older than I was. But the rehab can take five months, six months, a year. But I rehabbed it quickly. So that was good. Felt like forever for you, felt like forever for me. But in the reality of it, I did recover quickly.

In-person participant 1: Five months. Well, it was a lot of rehab. No, because I had it in September and I finished my rehab at Thanksgiving, the week of Thanksgiving. So that was really quick because most people who get knee replacements, well, they're a lot older than I was. But the rehab can take five months, six months, a year. But I rehabbed it quickly. So that was good. Felt like forever for you, felt like forever for me. But in the reality of it, I did recover quickly.

Stella & Georgia: And yeah, we didn't do much. And to be honest, I was in a lot of pain and kind of sad, so there was probably a little bit of depression that didn't make me want to leave the house either. Don't get upset. I'm not depressed. But when you go through and you have all those medicines in you and you know, you do get sad and you do get frustrated that you're 45 years old and you literally can't get off out of bed without somebody helping you like this. little bit. Mental warfare, we like to call it. What about you?

In-person participant 1: And yeah, we didn't do much. And to be honest, I was in a lot of pain and kind of sad. So there was probably a little bit of depression that didn't make me want to leave the house either. Don't get upset. I'm not depressed. But when you go through and you have all those medicines in you and you know, you do get sad and you do get frustrated that you're 45 years old and you literally can't get off out of bed without somebody helping you like this. little bit. Mental warfare, we like to call it. What about you?

Stella & Georgia: You felt frustrated? I don't think I really get frustrated just because I understand it. I think more than maybe... I want to say, like I'm not worried about making you mad. This part I'm worried about making her mad. I understand it enough that it's like it's not fair to be frustrated in my mind because you, you know, like you can help it. There's nothing you can do. Yeah.

In-person participant 1: You felt frustrated? I don't think I really get frustrated just because I understand it. I think more than maybe... I want to say, like I'm not worried about making you mad. This part I'm worried about making her mad. I understand it enough that it's like it's not fair to be frustrated in my mind because you, you know, like you can help it. There's nothing you can do. Yeah.

Stella & Georgia: ⁓ Well, I think we kind of touched on this a little bit, but I think that these questions are important because I don't know that, I mean, we've never, I've never asked you these questions. So I'm going to assume anyone who's watching this has never sat down with their teenagers and said, how does this affect your life? So this could be very valuable for other mothers who are listening that are now going to maybe ask their kids or want to know, do they feel the way you feel? Do they feel differently? ⁓ So I kind of know the answers to these questions.

In-person participant 1: ⁓ Well, I think we kind of touched on this a little bit, but I think that these questions are important because I don't know that, I mean, we've never, I've never asked you these questions. So I'm going to assume anyone who's watching this has never sat down with their teenagers and said, how does this affect your life? So this could be very valuable for other mothers who are listening that are now going to maybe ask their kids or want to know, do they feel the way you feel? Do they feel differently? ⁓ So I kind of know the answers to these questions.

Stella & Georgia: But it's okay, I want you to share them if you feel so. you don't share anything you don't want to share.

In-person participant 1: But it's okay, I want you to share them if you feel so. you don't share anything you don't want to share.

Stella & Georgia: How do you feel when I don't feel well? Georgia, you go first.

In-person participant 1: How do you feel when I don't feel well? Georgia, you go first.

Stella & Georgia: I feel like a deep sadness that I like I'm trying to like I know I can't do anything about it So I try to like I know it's probably not the healthiest thing to do I try to try to ignore it just a little bit because I know that that's not gonna help me It's not gonna help you but it's definitely like a deep sadness and like a guilt even though I don't know where the guilt is coming from if that makes sense Because I think you are such an empath that you've come out of the shot a little bit You actually feel someone else's pain

In-person participant 1: I feel like a deep sadness that I like I'm trying to like I know I can't do anything about it So I try to like I know it's probably not the healthiest thing to do I try to try to ignore it just a little bit because I know that that's not gonna help me It's not gonna help you but it's definitely like a deep sadness and like a guilt even though I don't know where the guilt is coming from if that makes sense Because I think you are such an empath that you've come out of the shot a little bit You actually feel someone else's pain

Stella & Georgia: and you feel guilty that you are like, I feel great, but I feel her sadness. Yeah, that's it. Yeah, and you feel guilty about that. That's... cuckoo canuckoo... But, I mean, there's no... guilt is not... There should be no part in this guilt. There's no reason for you to feel guilty for any of this. It's nobody's fault. This is the cards I was dealt.

In-person participant 1: and you feel guilty that you are like, I feel great, but I feel her sadness. Yeah, that's it. Yeah, and you feel guilty about that. That's... cuckoo canuckoo... But, I mean, there's no... guilt is not... There should be no part in this guilt. There's no reason for you to feel guilty for any of this. It's nobody's fault. This is the cards I was dealt.

Stella & Georgia: And this is the cards you were dealt too. ⁓ And we're all going to be stronger for it in the end, right? We already are. ⁓

In-person participant 1: And this is the cards you were dealt too. ⁓ And we're all going to be stronger for it in the end, right? We already are. ⁓

Stella & Georgia: Have you ever worried about me? Yes. All the time. When your knee surgery happened and you were like screaming and like, cause they, cause they were testing the new medicine on you. was ill-advised. Don't let them test medicine on you. you're getting a total knee replacement stick with the old stuff. Don't try the new stuff. It was terrible. Yeah. I actually, I don't remember where I went exactly, but I know that I had to get, couldn't be in the same room with you.

In-person participant 1: Have you ever worried about me? Yes. All the time. When your knee surgery happened and you were like screaming and like, cause they, cause they were testing the new medicine on you. was ill-advised. Don't let them test medicine on you. you're getting a total knee replacement stick with the old stuff. Don't try the new stuff. It was terrible. Yeah. I actually, I don't remember where I went exactly, but I know that I had to get, couldn't be in the same room with you.

Stella & Georgia: moment

In-person participant 1: moment

Stella & Georgia: I did not prepare anyone in the house for how hard that was going to be. And obviously that is something that really stuck with you guys because we keep bringing it up. ⁓ And I am going to have to the other one done, but we will all have a better idea of what we're going through and it shouldn't, you know, I shouldn't need Grammys help as much because I will be able to drive a lot faster because it's not my driving leg. ⁓ You only drive with one foot,

In-person participant 1: I did not prepare anyone in the house for how hard that was going to be. And obviously that is something that really stuck with you guys because we keep bringing it up. ⁓ And I am going to have to the other one done, but we will all have a better idea of what we're going through and it shouldn't, you know, I shouldn't need Grammys help as much because I will be able to drive a lot faster because it's not my driving leg. ⁓ You only drive with one foot,

Stella & Georgia: No, I know but... It's a little scary because we just gave you a driving lesson on the golf cart. No, I know that but I'm saying like you get knee surgery and you drive again? Well, not right away but like I couldn't drive with my right knee because you need your right foot to drive and it wasn't moving. You used your left foot to do that. Yeah, exactly. Hey, good on you girl. Yeah! Is there anything, and if the answer is no that's fine, that you've been afraid to say to me?

In-person participant 1: No, I know but... It's a little scary because we just gave you a driving lesson on the golf cart. No, I know that but I'm saying like you get knee surgery and you drive again? Well, not right away but like I couldn't drive with my right knee because you need your right foot to drive and it wasn't moving. You used your left foot to do that. Yeah, exactly. Hey, good on you girl. Yeah! Is there anything, and if the answer is no that's fine, that you've been afraid to say to me?

Stella & Georgia: about all of this.

In-person participant 1: about all of this.

Stella & Georgia: But I do think that that is very specific to me and you being, me and Georgia are being raised by this. Yeah. And I think that if there was a family out there, slightly different personality in their kids and their mother was not, or their mother and her father did not have it when they were young, I think that it would become a harder topic to talk about. That can be true. Like if someone was diagnosed when their kids were seven and 10. Yeah. It might be a little bit different.

In-person participant 1: But I do think that that is very specific to me and you being, me and Georgia are being raised by this. Yeah. And I think that if there was a family out there, slightly different personality in their kids and their mother was not, or their mother and her father did not have it when they were young, I think that it would become a harder topic to talk about. That can be true. Like if someone was diagnosed when their kids were seven and 10. Yeah. It might be a little bit different.

Stella & Georgia: But this is all you've ever known. Yeah, exactly. You don't know me any different. Mm-hmm. Right? All I know is the things we've heard about your wonderful college basketball.

In-person participant 1: But this is all you've ever known. Yeah, exactly. You don't know me any different. Mm-hmm. Right? All I know is the things we've heard about your wonderful college basketball.

Stella & Georgia: We don't need to go down that road. Mom, we used to do the exact same thing. So, we both just went... We're in behaviors. Okay, when do you feel the closest to me even when I'm not feeling well? Right here. I know. When I'm hugging you. Georgia, When you're in a really, really good mood like you are right now. ⁓ yeah. When you feel wonderful to be around. Yeah, like when you're always making fun of dad and you're like...

In-person participant 1: We don't need to go down that road. Mom, we used to do the exact same thing. So, all of sudden, we both just went... Worn behaviors. Okay, when do you feel the closest to me even when I'm not feeling well? Right here. I know. When I'm hugging you. Georgia, um... When you're in a really, really good mood like you are right now. Oh, yeah. When you feel wonderful to be around. Yeah, like when you're always making fun of dad and you're like...

Stella & Georgia: When you have, when you call dad something that are very funny and he knows we're joking, but he acts like we're not joking. That's the best part. Yeah. And you're gonna get needed. You're like happy and like, So when I use humor. Yes. Yeah. You like it when it's funny. Well, that's good because that's how I roll. Yes. That's what I like. All right. ⁓

In-person participant 1: When you have, when you call dad something that are very funny and he knows we're joking, but he acts like we're not joking. That's the best part. Yeah. And you're gonna get needed. You're like happy and like, So when I use humor. Yes. Yeah. You like it when it's funny. Well, that's good because that's how I roll. Yes. That's what I like. All right. ⁓

Stella & Georgia: What's something you, again this is for other moms to think about with their own children, but what's, I don't need this to bump up my ego, I know how you guys love me. But what's something you appreciate about me as your mom? ⁓ The advice. The advice. And like the understanding. With the way you were raising your family life on top of all of this, I feel like it's definitely something that's been valuable in my life to have. That second, like if I know I need to talk to someone about something.

In-person participant 1: What's something you, again this is for other moms to think about with their own children, but what's, I don't need this to bump up my ego, I know how you guys love me. But what's something you appreciate about me as your mom? ⁓ The advice. The advice. And like the understanding. With the way you were raising your family life on top of all of this, I feel like it's definitely something that's been valuable in my life to have. That second, like if I know I need to talk to someone about something.

Stella & Georgia: And I don't think and I'm like uncomfortable about it It will it will take me a little nerve just to like be able to say it. Maybe the other night I was being so ridiculous but What was that about again? Yeah that was your books. I don't know that I wanted that. Okay moving on. It was something really stupid about Easter.

In-person participant 1: And I don't think and I'm like uncomfortable about it It will it will take me a little nerve just to like be able to say it. Maybe the other night I was being so ridiculous but What was that about again? Yeah that was your books. I don't know that I wanted that. Okay moving on. It was something really stupid about Easter.

Stella & Georgia: I know, but part of the thing is that I know when you have something you need to say. Yeah, I know it's like silly. And you don't want to say it. I didn't know how to say it. It felt so dumb. She thought she was too old for an Easter basket. And it wasn't the fact that I wasn't getting an Easter basket. was the nostalgia of it that had, I don't know. Tears. Well, we've been through, we've been through so far. We start crying about Easter again.

In-person participant 1: I know, but part of the thing is that I know when you have something you need to say. Yeah, I know it's like silly. And you don't want to say it. I didn't know how to say it. It felt so dumb. She thought she was too old for an Easter basket. And it wasn't the fact that I wasn't getting an Easter basket. was the nostalgia of it that had, I don't know. Tears. Well, we've been through, we've been through so far. We start crying about Easter again.

Stella & Georgia: Isn't she the best? love it. Is my chair the only one that's squeaking? Well, you're the only one who's rocking like back and forth and back and forth. Okay. ⁓

In-person participant 1: Isn't she the best? love it. Is my chair the only one that's squeaking? Well, you're the only one who's rocking like back and forth and back and forth. Okay. ⁓

Stella & Georgia: What's something, maybe this is a little bit redundant, but what's something you've learned because of what we've all gone through? Because of what I go through. You never know what somebody's experiencing behind the scenes. ⁓ yeah. Cause you change your voice when you're talking to someone new. Like I don't know, like you, not only obviously I've seen the behind the scenes of people with diseases, but then you meet somebody and you change your voice. And unless you're with like, some refugees or like someone, close friend.

In-person participant 1: What's something, maybe this is a little bit redundant, but what's something you've learned because of what we've all gone through? Because of what I go through. You never know what somebody's experiencing behind the scenes. ⁓ yeah. Cause you change your voice when you're talking to someone new. Like I don't know, like you, not only obviously I've seen the behind the scenes of people with diseases, but then you meet somebody and you change your voice. And unless you're with like, some refugees or like someone, close friend.

Stella & Georgia: you have this different, more cheery... Like I'm pretending? No, you're... I know you're not pretending because I know it's just your other people voice but it's... It feels to me...

In-person participant 1: you have this different, more cheery... Like I'm pretending? No, you're... I know you're not pretending because I know it's just your other people voice but it's... It feels to me...

Stella & Georgia: Like when you're used to people. when you're used to people. You. In my comfort zone. Yeah, you're your I have a trust thing. Yeah. Well that's, that's probably very true. I don't know that I've ever really. But like when you meet new people, it's not that you're mean to them. Like you're very sweet. Like. Yeah. Your voice is like very like. Yeah, I might have a little bit of trust things with new people. Yeah. But. I don't know if that has anything to do with autoimmune. That's just something. Yeah. That I've always noticed. Yeah. Okay. What about you? Pretty.

In-person participant 1: Like when you're used to people. when you're used to people. You. In my comfort zone. Yeah, you're your I have a trust thing. Yeah. Well that's, that's probably very true. I don't know that I've ever really. But like when you meet new people, it's not that you're mean to them. Like you're very sweet. Like. Yeah. Your voice is like very like. Yeah, I might have a little bit of trust things with new people. Yeah. But. I don't know if that has anything to do with autoimmune. That's just something. Yeah. That I've always noticed. Yeah. Okay. What about you? Pretty.

Stella & Georgia: Something you've learned? Wait, is that what is? Yeah. Um, kind of got a little off track there. Something I've learned. Yeah, probably like that you can't like, how do I say it? What Stella said, you can't. You never know what someone's going through. Yeah, every time we came home and we're like, ah, this girl was so annoying. I'm like, oh, she's so weird. She's totally, you're like, well, she probably doesn't have a good home life. You have to like pray for her or something. So.

In-person participant 1: Something you've learned? Wait, is that what is? Yeah. Um, kind of got a little off track there. Something I've learned. Yeah, probably like that you can't like, how do I say it? What Stella said, you can't. You never know what someone's going through. Yeah, every time we came home and we're like, ah, this girl was so annoying. I'm like, oh, she's so weird. She's totally, you're like, well, she probably doesn't have a good home life. You have to like pray for her or something. So.

Stella & Georgia: Because you never know what's going on behind the scenes. Especially as moms, we don't like... ⁓

In-person participant 1: Because you never know what's going on behind the scenes. Especially as moms, we don't like... ⁓

Stella & Georgia: We're always trying to keep everything together and keep everything going and keep everything moving and the family unit and all this stuff. we don't, we don't, a lot of us don't like to feel, pity. I don't know if that's the right word, but like we don't want people to think, ⁓ she's doesn't feel like there's something wrong. Treat us differently because of it. we're juggling all these balls all the times and then our immune system crashes and we have to rest and we have no choice. So, and then you guys see the behind the scenes that the rest of the world doesn't see. Yeah.

In-person participant 1: We're always trying to keep everything together and keep everything going and keep everything moving and the family unit and all this stuff. we don't, we don't, a lot of us don't like to feel, pity. I don't know if that's the right word, but like we don't want people to think, ⁓ she's doesn't feel like there's something wrong. Treat us differently because of it. we're juggling all these balls all the times and then our immune system crashes and we have to rest and we have no choice. So, and then you guys see the behind the scenes that the rest of the world doesn't see. Yeah.

Stella & Georgia: So you've learned that, and I do try to instill that in you, is that you know what, if there's someone bullying someone at school, you don't know what they're going through at home. Just like people don't know what I go through at home and what you guys see at home. And it's good stuff here, except for the autoimmune, but you you gotta pray for those people. Because people aren't born nasty. Yeah, you've instilled that into me so much that I remember when we were talking about that girl who got moved into my class after she was...

In-person participant 1: So you've learned that, and I do try to instill that in you, is that you know what, if there's someone bullying someone at school, you don't know what they're going through at home. Just like people don't know what I go through at home and what you guys see at home. And it's good stuff here, except for the autoimmune, but you you gotta pray for those people. Because people aren't born nasty. Yeah, you've instilled that into me so much that I remember when we were talking about that girl who got moved into my class after she was...

Stella & Georgia: OSS I was full suspension for doing things that are I'm not gonna say anything because it's not my place to say things but my first thought when I thought when I When I heard that story was Mom's gonna say I need to pray for her. That was the first that I thought and I was because no functioning kids Don't go to school and do the things that that girl did. Yeah, so and Blast somebody's personal story on yeah, okay ⁓

In-person participant 1: OSS I was full suspension for doing things that are I'm not gonna say anything because it's not my place to say things but my first thought when I thought when I When I heard that story was Mom's gonna say I need to pray for her. That was the first that I thought and I was because no functioning kids Don't go to school and do the things that that girl did. Yeah, so and Blast somebody's personal story on yeah, okay ⁓

Stella & Georgia: Okay, what do you think, what do want other people to understand about ⁓ moms like me or families like us or kids? That it's like really hard and like you have to try like like 10 times harder or whatever like just to get the same outcome that anyone else would. That's very accurate. We have to like I know

In-person participant 1: Okay, what do you think, what do want other people to understand about ⁓ moms like me or families like us or kids? That it's like really hard and like you have to try like like 10 times harder or whatever like just to get the same outcome that anyone else would. That's very accurate. We have to like I know

Stella & Georgia: like another un- ⁓ quote normal family without any of these disease they can just be like hey let's go do this this sounds like fun we can do it well we have to take into account like can mom can we- mom gonna be able to actually do this orange as- ⁓ my god is that and are we actually- if we go this place am I actually gonna be able to eat anything there which is a slightly different which is a different disease but it's something we have to take into account that most people don't and i i think that's

In-person participant 1: like another un- ⁓ quote normal family without any of these disease they can just be like hey let's go do this this sounds like fun we can do it well we have to take into account like can mom can we- mom gonna be able to actually do this orange as- ⁓ my god is that and are we actually- if we go this place am I actually gonna be able to eat anything there which is a slightly different which is a different disease but it's something we have to take into account that most people don't and i i think that's

Stella & Georgia: something that not everyone understands. And there's a lot of opportunity cost to doing things. So I don't know if you know what that means, but if we do decide to take a full day and go wherever, more than likely the next day I'm going to be tired. So the opportunity cost, the cost of which we did that will eventually run out. like, you know, we're going to a concert in a couple of weeks and we're going to be out late and I don't do that very often. So I will probably be tired the next day. Brace yourself, Georgia.

In-person participant 1: something that not everyone understands. And there's a lot of opportunity cost to doing things. So I don't know if you know what that means, but if we do decide to take a full day and go wherever, more than likely the next day I'm going to be tired. So the opportunity cost, the cost of which we did that will eventually run out. like, you know, we're going to a concert in a couple of weeks and we're going to be out late and I don't do that very often. So I will probably be tired the next day. Brace yourself, Georgia.

Stella & Georgia: I will too actually. I'm just gonna remain in late concert so it'll be super fun and I'm excited to see him sing but I don't know if I'm gonna love the like people. I love people but that's a little weird. Well we've gone to the South Carolina football games and that's been fun. Yeah so I'll probably be fine. Are we gonna be in this? You know what that's not a question. We can talk about that later.

In-person participant 1: I will too actually. I'm just gonna remain in late concert so it'll be super fun and I'm excited to see him sing but I don't know if I'm gonna love the like people. I love people but that's a little weird. Well we've gone to the South Carolina football games and that's been fun. Yeah so I'll probably be fine. Are we gonna be in this? You know what that's not a question. We can talk about that later.

Stella & Georgia: Do you think this experience has shaped who you are? Yeah, definitely. I think I used, before I really started like growing in my empathy, I used to be a very different person and then that empathy started like catching for lack of a better word. And I became this more, I like obviously you're more naive as a child, but I was very like, Oh, there's nothing bad in the world when I was a kid.

In-person participant 1: Do you think this experience has shaped who you are? Yeah, definitely. I think I used, before I really started like growing in my empathy, I used to be a very different person and then that empathy started like catching for lack of a better word. And I became this more, I like obviously you're more naive as a child, but I was very like, Oh, there's nothing bad in the world when I was a kid.

Stella & Georgia: And I know most kids are, I think that I took that there actually is bad stuff in the world to a higher level than some kids do when they go from that. Because I was experiencing what you were experiencing, like secondhand. You were so overwhelmed with all the emotions that were going on. part of that's puberty too, and just being the age that you were in and all of that stuff. But yeah, I agree. What do you think?

In-person participant 1: And I know most kids are, I think that I took that there actually is bad stuff in the world to a higher level than some kids do when they go from that. Because I was experiencing what you were experiencing, like secondhand. You were so overwhelmed with all the emotions that were going on. part of that's puberty too, and just being the age that you were in and all of that stuff. But yeah, I agree. What do you think?

Stella & Georgia: You can say path. Wait, wait, the question. Yeah. Do you think this experience is shade to you are? Yeah. Well, I guess, but I don't know for sure because I don't remember like. Yeah, that's OK. I feel like I would have been different if it wasn't. Yeah. Do you ever think about like, I wonder if mom was like.

In-person participant 1: You can say path. Wait, wait, the question. Yeah. Do you think this experience is shade to you are? Yeah. Well, I guess, but I don't know for sure because I don't remember like. Yeah, that's OK. I feel like I would have been different if it wasn't. Yeah. Do you ever think about like, I wonder if mom was like.

Stella & Georgia: how she was before, even though you guys didn't know me then, because I've had this longer than you have been alive, you've heard stories about me running marathons and stuff like that. Do you ever think about, geez, I wonder what our life would look like? I have never thought about that. We for sure would not be living in South Carolina. Yeah, no, definitely not. We moved here specifically to make me feel better. It's interesting to think about. I've never thought about that, but. Yeah. So many good things have come out of it. I know. Even though that's the lesson that I've learned. Yeah.

In-person participant 1: how she was before, even though you guys didn't know me then, because I've had this longer than you have been alive, you've heard stories about me running marathons and stuff like that. Do you ever think about, geez, I wonder what our life would look like? I have never thought about that. We for sure would not be living in South Carolina. Yeah, no, definitely not. We moved here specifically to make me feel better. It's interesting to think about. I've never thought about that, but. Yeah. So many good things have come out of it. I know. Even though that's the lesson that I've learned. Yeah.

Stella & Georgia: is that it's been tough and it's hard and it's a miserable disease and it's painful and it's exhausting but there's been a lot of blessings and I've met a lot of amazing people and we moved to this amazing part of the country that we love so much because of it so it can't all be bad right? that's the other thing I've learned when I was younger I did go through like a rock to pass with my faith and ever since then I realized that you can't go God isn't going to put something

In-person participant 1: is that it's been tough and it's hard and it's a miserable disease and it's painful and it's exhausting but there's been a lot of blessings and I've met a lot of amazing people and we moved to this amazing part of the country that we love so much because of it so it can't all be bad right? that's the other thing I've learned when I was younger I did go through like a rock to pass with my faith and ever since then I realized that you can't go God isn't going to put something

Stella & Georgia: in your way if you can't learn from it and that is sometimes small sometimes big

In-person participant 1: in your way if you can't learn from it and that is sometimes small sometimes big

Stella & Georgia: But it's always gonna be worth it, because he does not make any mistakes. Amen. Amen. Hallelujah.

In-person participant 1: But it's always gonna be worth it, because he does not make any mistakes. Amen. Amen. Hallelujah.

Stella & Georgia: Okay. What advice would you give? So say one of your friends, God forbid, came to you and said my mom was just diagnosed with rheumatoid arthritis. What would you say? I would say that.

In-person participant 1: Okay. What advice would you give? So say one of your friends, God forbid, came to you and said my mom was just diagnosed with rheumatoid arthritis. What would you say? I would say that.

Stella & Georgia: Well, I would probably like it. I would say this softer, but like nothing's going to be the same again. You're not going be able to do the same thing. You're not going be able to enjoy as much time with your mom the way you used to. You're going to have to, um. You would just truth-bomb her with all the negatives? No, no, no, no, no. I would, I'm saying I would figure out a better way to say this because this is what I would all want to say. And it's going to be, it's going to take a while for her to find a medicine that's going to work. But when she does.

In-person participant 1: Well, I would probably like it. I would say this softer, but like nothing's going to be the same again. You're not going be able to do the same thing. You're not going be able to enjoy as much time with your mom the way you used to. You're going to have to, um. You would just truth-bomb her with all the negatives? No, no, no, no, no. I would, I'm saying I would figure out a better way to say this because this is what I would all want to say. And it's going to be, it's going to take a while for her to find a medicine that's going to work. But when she does.

Stella & Georgia: you'll all have learned from it. And it's not a good thing to go through, but it is survivable and it's going to make you a better

In-person participant 1: you'll all have learned from it. And it's not a good thing to go through, but it is survivable and it's going to make you a better

Stella & Georgia: I have no clue. I would probably be like, I'm so sorry, like give him a hug or something. Then maybe after everything I could just be like,

In-person participant 1: I have no clue. I would probably be like, I'm so sorry, like give him a hug or something. Then maybe after everything I could just be like,

Stella & Georgia: That's good. I think that's good. I would give them a hug if they weren't general. Okay. So, sorry. I have one friend that doesn't do anything like Physical touch is not her love language. No. That's fine. That's fine. I don't really give hugs except for her. What advice would you give to me? For you having her...what do you mean? Just like anything. Any advice you have for me?

In-person participant 1: That's good. I think that's good. I would give them a hug if they weren't general. Okay. So, sorry. I have one friend that doesn't do anything like Physical touch is not her love language. No. That's fine. That's fine. I don't really give hugs except for her. What advice would you give to me? For you having her...what do you mean? Just like anything. Any advice you have for me?

Stella & Georgia: You're not the advice giver.

In-person participant 1: You're not the advice giver.

Stella & Georgia: Alright, what's your favorite memory of us as a family? Maine. Maine? We did Maine with all my brothers and sisters and all the nieces and nephews and my parents. That was like 10 years ago. There was one recent one but I'm not sure if I can say it.

In-person participant 1: Alright, what's your favorite memory of us as a family? Maine. Maine? Maine. We did Maine with all my brothers and sisters and all the nieces and nephews and my parents. That was like 10 years ago. There was one recent one but I'm not sure if I can say it.

Stella & Georgia: Georgia said something that was that my dad thought he could make a joke out of and it was not

In-person participant 1: Georgia said something that was that my dad thought he could make a joke out of and it was not

Stella & Georgia: when

In-person participant 1: when

Stella & Georgia: Recently?

In-person participant 1: Recently?

Stella & Georgia: I still think Maine. But I do think that Maine experience will be soon overcome by the cruise we're going on. Yes. We're going on a cruise with most of the cousins. It's going to be chaos. Yes, it's going to be fun. There's about 20 of us going so that will be good. Alright, what makes you feel the most loved by me? The combination of things.

In-person participant 1: I still think Maine. But I do think that Maine experience will be soon overcome by the cruise we're going on. Yes. We're going on a cruise with most of the cousins. It's going to be chaos. Yes, it's going to be fun. There's about 20 of us going so that will be good. Alright, what makes you feel the most loved by me? The combination of things.

Stella & Georgia: She is a physical touch person. Only with her. I don't hug my friends. That's weird. She has to hug a hundred times a day.

In-person participant 1: She is a physical touch person. Only with her. I don't hug my friends. That's weird. She has to hug a hundred times a day.

Stella & Georgia: ⁓ I think,

In-person participant 1: ⁓ I think,

Stella & Georgia: When you tell me something I don't necessarily want to hear and I know in that moment that you are right but I don't want you to be right that's when I feel the most love because you're not guarding me. That makes perfect sense because I'm doing the hard thing because it's for the betterment of you and that makes you feel loved.

In-person participant 1: When you tell me something I don't necessarily want to hear and I know in that moment that you are right but I don't want you to be right that's when I feel the most love because you're not guarding me. That makes perfect sense because I'm doing the hard thing because it's for the betterment of you and that makes you feel loved.

Stella & Georgia: Why aren't you as deep as she is? I have one deep one. All right, guys. Well, I love you both. I think we're doing it the right way. I don't know if there's another way to do it, but this is the way we're doing it. We're doing life this way and it's working for us. ⁓ And I appreciate you guys sharing your thoughts and your feelings with the world of moms out there who might need it. Do you have anything you want to say to moms out there? ⁓ I would say.

In-person participant 1: Why aren't you as deep as she is? I have one deep one. All right, guys. Well, I love you both. I think we're doing it the right way. I don't know if there's another way to do it, but this is the way we're doing it. We're doing life this way and it's working for us. ⁓ And I appreciate you guys sharing your thoughts and your feelings with the world of moms out there who might need it. Do you have anything you want to say to moms out there? ⁓ I would say.

Stella & Georgia: For those who have been newly diagnosed, your kids will probably have a little harder time than me and Georgia did because mom had been diagnosed when before we were born or very close to when we were born, I don't remember exactly. But if you talk to them, it will be significantly easier if you would just don't hide them from anything because they have to know what's going on. ⁓ They have to know what's going on if they're ever going to.

In-person participant 1: For those who have been newly diagnosed, your kids will probably have a little harder time than me and Georgia did because mom had been diagnosed when before we were born or very close to when we were born, I don't remember exactly. But if you talk to them, it will be significantly easier if you would just don't hide them from anything because they have to know what's going on. ⁓ They have to know what's going on if they're ever going to.

Stella & Georgia: recover from it, if that makes sense.

In-person participant 1: recover from it, if that makes sense.

Stella & Georgia: ⁓ I would say if they were like born into it they don't want to know anything different and they love you for that because like they don't they don't know what else it would be like but if it's like new it'll take a while but it'll feel normal again after some time. You guys are dropping some truth bombs over here I love it. I'm proud of you guys.

In-person participant 1: ⁓ I would say if they were like born into it they don't want to know anything different and they love you for that because like they don't they don't know what else it would be like but if it's like new it'll take a while but it'll feel normal again after some time. You guys are dropping some truth bombs over here I love it. I'm proud of you guys.

Stella & Georgia: Thanks. Alright. Anything else you want to say? I we only cried once over Easter, so... Stella's been fighting back tears a little bit. Yeah, I can hear your voice. My voice drops. She feels everything. Yeah. Well, thank you all so much for listening to us. If you have any questions, we'd love to hear from you. If you have any kids who need a little support, I think my kids would be open to email penpalling people and they're willing to talk to people through email or whatever.

In-person participant 1: Thanks. Alright. Anything else you want to say? I we only cried once over Easter, so... Stella's been fighting back tears a little bit. Yeah, I can hear your voice. My voice drops. She feels everything. Yeah. Well, thank you all so much for listening to us. If you have any questions, we'd love to hear from you. If you have any kids who need a little support, I think my kids would be open to email penpalling people and they're willing to talk to people through email or whatever.

Stella & Georgia: text messaging, ⁓ so get in touch with me and thank you for listening to me and my crazy family. We gotta get dad on here. Yeah, we do. And then we have to carve jokes at his expense just so they can see what we're talking about.

In-person participant 1: text messaging, ⁓ so get in touch with me and thank you for listening to me and my crazy family. We gotta get dad on here. Yeah, we do. And then we have to carve jokes at his expense just so they can see what we're talking about.

Stella & Georgia: Alright, well thank you all. Have a great week and thank you girls. I love you so much and I'm proud of you.

In-person participant 1: Alright, well thank you all. Have a great week and thank you girls. I love you so much and I'm proud of you.