Josie shares how she stays healthy and happy while living with Juvenile Rheumatoid Arthritis.
Transcript from the GIRLBRAVE Podcast. Episode 3.
In this episode I'm talking with 16 year old Josie. Four years ago, Josie was diagnosed with JRA, Juvenile Rheumatoid Arthritis, but she doesn't let it slow her down. She's a long distance swimmer and an actress who's playing the lead in our schools play. Find out how Josie learned she had JRA, what advice she has for others who are going through hard times and what she does to stay happy. So let's get to it.
Hi Josie, how are you?
Thank you for being on the show today.
Yeah, no problem.
So tell us a little bit about yourself.
I am a Josie, recently, 16 years old as of October, and I am in 10th grade, so I'm a sophomore.
How do you like driving?
Driving is definitely very freeing. I can do a lot more now than I could before.
Are you driving a lot of people around?
Yes, all the time. I'm constantly getting requests from my friends to drive them home from rehearsals or my brother. I drive him home from school every day.
How old is your brother?
My brother is 14 so he's about a year and a half younger than me.
What are you rehearsing for?
I'm in rehearsals right now for our one act play at Lincoln Southeast high school. We're doing Alice in Wonderland and I am currently Alice right now. So it's a lot of rehearsals. I have to be there every night.
Wow. That sounds like an awesome role. How many hours of rehearsal do you have at night?
Um, we usually have rehearsal about every single day and it's various what time it starts. But it's usually an hour and a half for one act. Cause you know, everybody else has got to have a lime. So we can't really have like four hour long rehearsals as some professional shows might have.
So what does it mean when you say one act?
Um, so it's a 30 minute show. So it's a full life play that we cut down to 30 minutes long and we rehearse it and we get ready for it. And it's kind of like our competition show. So our districts is coming up in December and we have districts all the way up in Gretna and we compete in different districts and whoever wins in the district gets to go to state. And it's a big thing for theater programs.
And do the students condense this down or do you purchase the play in one act?
Oh are we have a theater director who purchases the rights to the show and then he makes the cuts that he wants in the show and it flows really well. He was amazing when he made cuts to that.
When do you memorize your lines? Do you memorize them at night?
Yes. Um, we actually just, this past Friday had a rehearsal, which is called start over where everybody has to be off book and have their lines memorized and we read through the entire show without script. So we have to have all of our lines memorize by that date. So it went really well. We got our whole, all of our lines done in one run through and everybody was out of school by four 15, which is amazing.
That sounds hard. I wouldn't even know where to start. Do you have any tricks to learn your lines?
Um, I don't know. I don't think I really have tricks. I just kind of do it. I guess it's me. I think a lot about the page and I think where I'm at in the page I, it's more just ha just running it over and over and over again. But I don't think I really have tricks. Oh, I do know one trick though, one of my friends told me this, if you have long monologues you record yourself on like voice members and you say the whole monologue and then you listened to yourself over and over and over again. So it's like memorizing music.
That's a good idea. I wonder if that would work for your homework as well?
Um, I have a hard time studying personally cuz I have a hard time just sitting in one place and just reading for a long time. So it's me mainly paying attention in classes and going over worksheets or doing games or stuff with my friends when we study.
So you're also a swimmer. How old were you when he started swimming?
I started swimming since I can remember. It's been forever. I saw the story is why started swimming when we went to the. Racket Club one day with my mom and I saw the swim team and I told my mom, I was like, what is that? And she's like, well that's a swim team and me being like three years old, I'm like, I want to do that. And then there's whole other stories with me trying to draw myself not knowing how to swim, but now just been for as long as I can remember.
What stroke do you swim?
Um, I'm a distance swimmer so I swim like the really long events, like the 23 minute miles and the 12 minutes, thousands and the six minute, five hundreds.Sounds like a long time to swim.
What are you thinking about when you swim that long?
There's a lot of strategy. I think it's all muscle memory kind of at this point for how long I've been doing it. But it's mainly me thinking, just trying to control everything, not going out too fast and controlling my speed because we have counters who put numbers in so that we know what number we're on so we don't lose count because we're swimming for so long and they can shake the counters to the side or shake it up and down, which tells me if I'm good on my pace or if I need to go faster or pick it up. And that's just kind of how I go through a mentality of that type of event.
It's a race obviously, but do they ever tell you that like, okay, slow down just a bit to keep your endurance or is it always just you're on pace or go faster?
Um, my coaches never tell me to go slower cause like obviously you don't want to go slower and you don't want to burn out but do. But it's how you can judge it when you start. If you do an event enough times though, you kind of get used to it and get used to how you're going to start the race. I always start the races by going slow and steady because a lot of people like to sprint the first hundred but then they get burnt out. So I take it easy and then I build myself up throughout the event.
But yeah...When I was about eight I was on swim team and I really loved it. But I did get nervous before meets. Do you get nervous before your meets?
I don't think I ever, if, if it's like qualifiers or champ beats then I definitely get nervous because it's like you have to win points for your team and you have to make this time. But I never really got nervous swimming cause I just, it was something fun for me that I love to do.
You were telling me earlier about JRA. Can you tell us what that stands for and when you found out you had it?
Yeah. Um, JRA is Juvenile Rheumatoid Arthritis and it is juvenile cause I am not an adult yet, so it's called Juvenile Rheumatoid Arthritis. It's basically where my immune system starts overworking. So I must've gotten sick one day and then my immune system was just working so hard to fight off the disease that I had that it started attacking joints in my body that weren't sick anymore, even when I was over the sickness.
So it's kind of my body attacking itself and there's erosion in my joints and there was just swelling with everything going on. It was winter when I found out we'd just gone sledding and I was watching a movie with my family and I was laying next to my dad and I leaned over. I was like, my hands aren't hurt really bad, my hands are all swollen. And my, I knew that my hands were swollen. They looked weird and they were mushy and gushy kinda like gummy bears. But that's just always how I'd remembered my hands.
I didn't really think there was anything wrong with them. And I was talking to my dad and my mom and dad started freaking out about it and we went to the doctor for my hands and they were testing me for all these different things and I did end up testing my blood tested RA positive. So I got referred to to a doctor in Omaha and that's where I first got diagnosed with JRA. It was a whirlwind of a day cause my dad has degenerative arthritis so it's a different form of RA, but his is from overworking and overusing his joints throughout his years. And mine is hereditary, but we don't really know what it's from. But it was a big day.
There was a lot of stuff that happens. I do take medication to suppress my immune system. I am very susceptible to getting sick, but I know how to like prevent from getting sick. But yeah, they told me I had arthritis and I was like, it sent off for old people.
That was just all that was running through my mind. I was like, what is going on? My mom obviously was all, how do we treat this? What are we gonna do about it? I obviously was thinking about that, but my mind was just like, what the heck is this? I don't know what this is. What am I going to do? I'm 12 I don't know what this means or anything, but it just learning throughout the years I came, I became very kind of a pro about it.
I imagine you would have to be, how do you prevent yourself from getting sick?
Um, today there's a lot of, I do, I have a job where I work with kids, so I am a swim instructor, so I'm very up close and personal with kids and yeah, kids have all these germs and everything, but I made sure that I take showers, use lots of hand sanitizer, always washing my hands. But it's just, I kind of don't really know when I'm going to get sick, but I know what to do when I get sick to get over it. But usually it's just like colds that I have to start my medication and then get over it and sometimes go to the doctor to get to get it dealt with.
So you've been living with JRA for about four years. Are there any lessons that you've learned that have helped you in other parts of your life?
It's definitely taught me how to persevere because when I first started my medication it was my body reacting and all sorts of different ways, not knowing what it was going through, not knowing what to do. And I definitely went through a big struggle in my, when I was younger and in middle school, if it's new, you're in a new school, it's you growing up, you have more freedom, you don't know what to do with it. Kind of all stir-crazy all at once. But on my body reacting to all this medication definitely sent me through kind of a slump in life I would say where I just, I my, I felt weaker. I wasn't feeling like myself. It definitely, I knew the medication was helping, but I knew, but it was taking a while to get used to it and to get in the rhythm of everything. But it's definitely taught me that stuff happens. Like bad things are gonna happen in your life and you've got to get over it. It's not what happens to you. It's what you make of what happens to you is what's really gonna pay off in the long run.
If there's a girl out there listening to this today and she's going to a hard time, do you have any advice that you'd give to her?
I would give her the advice of just live through it. It's going to happen. Bad stuff is going to happen. It's mainly you have to really think about what is going to happen after this. You can't think about, Oh, I feel so bad right now. I feel so awful right now. It's never going to get better. You have to think of what's going to after after you change your attitude after you change how you look at what is happening in the moment, but it's in the moment how you change it and how you perceive yourself and how you know that you can make it through.
You have to just really believe in yourself. It's not easy when you're in the middle of something to think about being on the other side of it.What sorts of things do you do in order to get yourself out of the present and looking more at the big picture?
Um, I really de-stress with music. I'm a very big theater person so I'm always listening to music. I'm always listening to new songs but I'll just, me personally, I like to find a playlist that I love and if I really need to, I need to lock myself in my room, play the music. There's a lot as I can and instead of actually singing to it, I'll lip sync. Cause then you can, sometimes you can just let yourself go when you lip sync more than can when you're actually singing. Cause then your head is just thinking about, Oh wait, that sounded bad. What am I doing? But lips thinking for me is kind of a way of letting go. And then I can, I can cry and I can be angry and I can show all these emotions. That is harder to do when you're singing or you're doing something that's vulnerable in front of other people.
Wow, that's a great idea. You mentioned you liked to listen to a lot of Broadway musicals. Which ones are you listening to now?
I'm a really big fan of Beetle Juice and all the new types of musicals that are on Broadway, like Beetle Juice, Haiti's town. They're just so interesting. And Beetle Juice is, is a very fanatic type of a movie cause it's classic. It's an old movie. Not a lot of kids know about it. But then seeing this musical, they've adapted it into this new way where the show is centered more around Lydia and her story of dealing with the grief of her mom and dealing how she's going to get through that and dealing with her dad who doesn't want to acknowledge that her mom is gone or that she's struggling just as much as he is. Um, it's just a really amazing musical. I listened to all sorts of things, but it's theater that's really helped me get through a lot of stuff.
What would be your ultimate role that you would like to play?
My ultimate role that I would love to play is Jenna in the musical Waitress. Um, I know a lot of people might not know what that is, but waitress is the story of Jenna and her friends. And she basically goes through her life. She's in an abusive relationship and she doesn't know what's happening and all of a sudden she gets pregnant with her daughter and she's a waitress in a shop and she goes to her doctor and she falls in love with him and her. She falls in love with her doctor and she doesn't know what to do. She a song about what baking can do and that's about like what her mom has taught her how to get through her struggles in life. But it's just, it's an amazing musical. The music is beautiful and that's just my ultimate role that I would love to play.
Do you see yourself living in New York one day?
Yes. Um, my mom actually went to Ithaca college in New York city. It's a couple of miles out of like the city city, but it's a very good college. I do want to, my goal would to be to go to New York city and to be a working actor in the city as I'm also in school, but that's something I definitely want to go into.That's amazing.
Very cool. Have you seen any Broadway shows?
I have not actually. I've never had the opportunity to see a Broadway show. I am fortunate though because my mom does work at the lead center for performing arts, so I get to go see lots of shows, but I've kind of been surrounded by this community and all these different people my whole life and I never really knew that it was what I was going to end up being obsessed with and just being so immersed in this world. That's just, it's so amazing.
I've always wondered, what does it feel like when you're immersed into a character?
It's kind of a stress reliever. It's not. It's different. It's hard to explain unless you're actually in it. But I know when I'm in a character and I'm lost in a show and I'm so lost in a story that I've been working on for so long, it's a way to escape kind of reality. So for me, when I'm having a hard time in school or if I'm struggling about my grades or I'm worried about a test, I have another day and I'm just freaking out cause I don't have straight A's or anything and, or I'm stressing about a boy in life or just anything I can know, I can just go to rehearsal and I can be around these people who are all working so hard to make production. That's so beautiful and that's so amazing. And it's just something that is so hard to describe.
That sounds wonderful. That's great that you have that outlet. All right. So here's another question for you. What do you do to stay happy?
Um, I definitely have a very happy home life. My family has been my rock for everything, and we're the kind of family where if you're having a bad day, we can always come home and we'll make you laugh. Or we'll watch movies and we won't talk about it and we can just be around each other and enjoy each other's company. But definitely it's my family makes me very happy. I'm very lucky.
Josie, you are so wise. Thank you so much for sharing your story and giving us all your wonderful advice.
GIRLBRAVE is a celebration of girls who are brave taking up space in the world. And claiming it. Thanks for listening. Join us next time on GIRLBRAVE Podcast.