Arthritis Is Ageless | Ep. 71

Arthritis can affect anyone — even children. Hear real talk about juvenile arthritis from those who have lived with it and how they adapted and overcame obstacles to thrive with JA. Scroll down for show notes and full transcript.

Show Notes

Kids get arthritis, too. It’s called juvenile arthritis (JA) and it affects about 300,000 children — more than juvenile diabetes. But it’s not simply a childhood form of adult arthritis. There are several distinct types of JA, each of which requires special considerations and unique treatments.
 
In this episode three individuals who have lived with JA for years join us for real talk about this chronic childhood condition. Hear their thoughts about it and how they adapted and overcame obstacles to thrive with JA over the years.

About the Guests

Brianna Ramos (Tampa, FL)
Read More About Bri Ramos
 
Beka Nicola (Atlanta, GA)
Read More About Beka Nicola

About the Host: Rebecca Gillett

Rebecca was diagnosed with rheumatoid arthritis at age 26 — and later with osteoarthritis and degenerative disc disease. Rebecca is the Arthritis Foundation’s director of content strategy and planning, helping ensure that our resources are centered on patients’ needs and concerns, from her perspectives as both a patient and as a health care provider. She earned her Bachelor of Science in telecommunication from the University of Florida and her Master of Science in occupational therapy from Colorado State University.

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Released on January 24, 2023
 
PODCAST OPEN:
You’re listening to the Live Yes! With Arthritis podcast, created by the Arthritis Foundation to help people with arthritis — and the people who love them — live their best lives. If you’re dealing with chronic pain, this podcast is for you. You may have arthritis, but it doesn’t have you. Here, you’ll learn how you can take control. Our host is Rebecca Gillett, an arthritis patient and occupational therapist, who is joined by others to help you live your Yes. 

MUSIC BRIDGE

Rebecca Gillett:
Thanks for joining us on this episode of the Live Yes! with Arthritis podcast. If you didn't know, kids get arthritis too. That's right. Over 300,000 children in the United States are doctor-diagnosed with a form of a pediatric rheumatic condition, or juvenile arthritis. That's a big umbrella term.
 
But at the Arthritis Foundation, we've worked to fund research, provide resources, and connect juvenile arthritis families over the years. We do this through an Annual Juvenile Arthritis Conference, juvenile arthritis camps across the US in different cities, and JA, as we call it, family days, as well as through new, national, virtual connect groups. But in my 20 plus years of living with rheumatoid arthritis, some of the most inspiring people I've met are kids with arthritis.
 
I was fortunate enough to attend a juvenile arthritis conference in Colorado many years ago, and it changed so much of my perspective of my own journey with arthritis. It was very powerful and motivating. And a friend of mine who was there with me, who was on a similar journey as me, we both just sat there in awe of all of the kids and families that we met. It really did light a fire in me to keep working toward making sure that we educate people with arthritis, but also to raise awareness. So many people out there don't know that kids get arthritis.
 
So often, since my 20s, in the 20 plus years I've had arthritis, have I had people say, "Oh, you're too young to have arthritis." And I always respond with, "Little do you know, there are kids that get diagnosed at 18 months and two years old." And so, in today's episode, we're gonna meet two young adults who have grown up with juvenile arthritis. They host their own podcast and were able to share their experiences with kids, teens, and young adults at this past summer's conference in July. And one thing that's so important no matter what your age is, is finding a connection with somebody else who also knows what you're going through and walks in your shoes. And so, I'm so excited to have Bri and Beka joining me today.
 
Bri Ramos and Beka Nelson host their own podcast called Those Girls With Arthritis. You may have seen it or heard it. And so, I'm excited to have them join me in this conversation today to tell us a little bit about their journeys, and other experience in connecting with other kids, and sharing their stories. So, welcome to the podcast, guys... Or girls.

Bri Ramos:
(laughs) Thank you. Thank you so much for that introduction, for having us.

Rebecca Gillett:
Let's start with you, Bri. Can you share a little bit about your story?

Bri Ramos:
So I'm 25 now. I was diagnosed at 13 with mixed connective tissue disease, which is more rare, but it falls under the, you know, arthritis umbrella that you were referring to. It’s a little bit different for everybody who has it. Mine's an overlap of rheumatoid arthritis, lupus, and scleroderma. So I first found out kind of about The Arthritis Foundation through my doctor, actually, my rheumatologist. I went to Children's Hospital of Philadelphia. That’s when I first found out about camp. And I attended one of the arthritis camps as a kid. And even as a teen and young adult, I went back as a counselor and whatnot. So, that was like really impactful. But since I was diagnosed, I mean, there's been a lot of ups and downs and everything. But it's been an interesting journey. I just have been glad to have the support of the foundation and everybody I've met along the way, for sure.

Rebecca Gillett:
Yeah, that's what you hear. A lot of kids grow up (laughs) basically, through The Arthritis Foundation and connecting with other people, which is I think how you met Beka. Is that right?

Bri Ramos:
Yes. Yeah. Beka and I met at an Arthritis Foundation, like it was some sort of networking connect event, um, in Tampa. I was still in college at the time. I hadn't gotten involved with the foundation at all, in Florida. I was involved up North, like Jersey, Philly chapter. Um, so it was my first, like, Florida event I was going to, and I was like, let me just go into this event, try to like talk to like one person at least while I'm there, and I saw Beka.
 
And she was like around my age, and I was like, oh, perfect. So I like went up to her, and we were talking. And then I ended up finding her the next day on LinkedIn and messaging her on (laughs) LinkedIn, which we always laugh about. Like, not Facebook or Instagram. It was LinkedIn (laughs) I went over-

Rebecca Gillett:
It was LinkedIn. (laughs)/ It was a networking event, of course. (laughs)

Bri Ramos:
Yeah, exactly. So we did meet through the foundation, which was really awesome.

Rebecca Gillett:
Well, that's awesome. So Beka Nelson, Thanks for joining us as well. Can you share a little bit about your journey and your story?

Beka Nicola:
Ya of course, like Bri said, thanks for having us. I was diagnosed 20 years ago as well. I was nine when I was diagnosed, and I'll never forget it. So I know... Obviously, everyone knows 9/11 was such a big, impactful thing on the United States, on the world. And that really kinda kicked off my diagnosis journey. I was trying to trace my hand for a school flag, and my hand couldn't lay flat. And I remember my teacher trying to like push on my hand and just-

Rebecca Gillett:
Ow.

Beka Nicola:
Being in so much pain. And that kinda triggered... Okay, something's going on. It's not just growing pains. She's not just complaining. She's, moving differently. Like, there's something going on. So after many, many doctor's appointments and things, they diagnosed me with juvenile rheumatoid arthritis. And being in third grade at the time I didn't really understand what it was.

I just knew like, something was, essentially wrong with me, which I know isn't kinda the right way to phrase it. But as a nine-year-old, that's just what I thought it was.

Rebecca Gillett:
Right.

Beka Nicola:
And I kinda took the opposite route of Bri. I did not really come to terms with having arthritis. I never wanted to talk about it. I didn't want other people to know about it. I like threatened my two sisters. I'd beat them up if they told anyone I had it.

Rebecca Gillett:
(laughs)

Beka Nicola:
I was very, like, don't wanna talk about it. Kinda let my parents tell other parents to tell my friends. Eventually, I kinda started telling my close friends and things. And just as I grew up, I started to get a little bit more comfortable with it. And then in college, um, I met some friends. I was going through recruitment for school, and I ended up joining an organization, a sorority, Alpha Omicron Pi. And their philanthropy was The Arthritis Foundation.

Rebecca Gillett:
Right.

Beka Nicola:
And at first, I didn't wanna join them because of it, but then I ended up joining them and finding like life-long friends who really helped me get more comfortable. And just being able to share my story and talk more about it really helped me open up. And from there, that's kinda when I got involved with The Arthritis Foundation. And you know, Jingle Bell Run is something I do every year. I have so much fun doing it.
 
And my team, and my family, and friends have supported me along the years. And that's, you know, kinda how it all spiraled, and ended up getting to meet Bri. And all of a sudden, we like blink, and I had a dream. And now, we're doing a podcast together, so.

Rebecca Gillett:
That's so fun.

Beka Nicola:
It's very fun.

Rebecca Gillett:
It's striking to hear you both tell kind of your story and, and how you shared your story of arthritis over the years and dealt with it, mentally and emotionally.

Beka Nicola:
Mm-hmm.

Rebecca Gillett:
Because I don't think it's any different from any adult who gets diagnosed. I was 26 when I was diagnosed. I didn't want anybody to know. I didn't really tell anybody. I actually ignored that I had it for the first two years, and I paid for it. And that's actually why I'm here today, right? So I didn't wanna tell a lot of people. I wanted to pretend like I (laughs) didn't have it, but I didn't know that there were things that I could do to help myself.

Beka Nicola:
Mm-hmm.

Rebecca Gillett:
You know? And, and I think, like Bri's story, when I got connected to another person and went to a meeting, I was like, "Oh, oh... Okay, this is normal that I'm having this kind of pain, or that I wake up like this. And I'm not, I'm not alone." Right?

Bri Ramos:
Yeah.

Rebecca Gillett:
And I think it doesn't matter what age you are. Like, you were saying, Beka you know something was wrong with me. Like, I, I don't want people to know that something's wrong with me. And I know so many JA kids who are on either side of that coin, right? Where they're willing to talk about it, or their parents are very willing to talk about it, and they're shy. And they don't wanna share it.
 
But it's all about your comfort level. But I think, you know, in all the podcasts we've done over the last few years, it's a personal thing. You know? Everybody's... Can be very private, and there are people who can be very open and do podcasts now. Right? (laughs)
 
Bri Ramos:
Yeah.

Rebecca Gillett:
It just goes to show, no matter your age, we all go through that, what we call, like it's a grieving process. We did an episode on grief this year and chronic illness. And it really is something that I think never goes away. It just changes, right? Because grief is change, is what I've learned.

Bri Ramos:
Yeah, When I was diagnosed, I mean, I had been having symptoms and things like that for probably a lot longer than we even realized. Like, at my first appointment where I was diagnosed, they were doing the thing, you know, like they poke on all of your joints and everything like that. And they were like, "Does this hurt? Does this hurt?" And everything hurt, but I thought that was normal.

Rebecca Gillett:
Yeah.

Bri Ramos:
At 13, because I had, that's what I was used to for so long. And how tired I was, and, oh, I'm just active with dance, and cheer, and school, and all this stuff. I thought it was all normal. So that's just interesting too. I mean, 'cause Beka and our stories, we talk, are different as well, because I wasn't diagnosed till I was a teenager. And Beka was younger. And then we talk to people who were diagnosed, like you were saying, at 18 months. And that's totally different.

Rebecca Gillett:
Right.

Beka Nicola:
I don't know how I would've reacted or how I would have acted being diagnosed later in life. Because I feel like I just, it just became my norm, especially just growing up. All these aches, and pains, and everything, this is like normal to me. It always is, is interesting to think about what would have, how I would've felt, what I could've done.

Rebecca Gillett:
Yeah. Well, nowadays, you just are in the moment, right? Or try to be. Like, okay, well... What am I (laughs) gonna wake up with tomorrow? You just never know, right? So it's... How am I gonna respond? Like you, you develop your toolbox, as we say, right? Of like, "Okay, if I wake up tomorrow and I'm hurting, here's my routine of the things that I do." Right?

Bri Ramos:
Yeah.

Rebecca Gillett:
But you're just used to it. Right? But like I've always said, there's always something that comes up that brings you back to that space again, where like, oh my god. I don't wanna share... I don't wanna share this. And I went through that this year 'cause I've had other health issues. But because I'm on immune suppressants... I've had COVID twice this year, and other stuff happening.
 
And it's just like, oh my god. I get exhausted (laughs) by myself. And I just don't care to share it anymore because it just feels like you're a broken record sometimes, you know?

Bri Ramos:
Yeah.

Rebecca Gillett:
You just go through these phases. But then you know that I got out of it before. I'm gonna get out of it again. I always feel for and get so, inspired by kids who grow up with it and start at a young age is the resiliency.
 
Bri Ramos:
I've been in the same boat before, where I'm like, I don't know how I can do this any longer. It just is a rollercoaster all the time. And you're just flipped right back to where you started and I’ve texted Beka before, like, I don't know what the heck I'm gonna say on my Instagram (laughs) this week. I feel terrible, and I don't wanna tell people that. Like I don't wanna be on there and be like, I feel terrible again. I don't wanna have to cancel on friends again.

Rebecca Gillett:
Yeah.

Bri Ramos:
It's annoying... people are probably annoyed listening to me talk about it. (laughs)

Rebecca Gillett:
Right.

Bri Ramos:
I think that too about kids. I was diagnosed at a young age, but then I see like the little babies. And I'm like, now, that's a warrior. Like, I'm like-

Rebecca Gillett:
Right.

Bri Ramos:
Holy moly. - you just compare it to yourself, and you're like, well, I guess I'm lucky. Like, I was only-

Rebecca Gillett:
Yeah. (laughs)

Bri Ramos:
Diagnosed at 13, (laughs)

Beka Nicola:
I think it's hard. 'Cause there is a community out there. And it's just like, how do you find it? It's like, we are very lucky. We got plugged in, like, with Jingle Bell, and The Arthritis Foundation, and volunteering, and things like that. But before, like, I really didn't know anyone in my community, in my school, in my sports teams who had arthritis.
 
I always talk about like yeah, arthritis is obviously physical. But it's emotional. It's mental. I grew up in a very faithful like household, like religious household. We went to church every Sunday, and it can affect you spiritually too. Like, the why me?

Rebecca Gillett:
Mm-hmm.

Beka Nicola:
So, it's just hard. It gets hard sometimes. But I think being able to have those people you can reach out to, and just like love and understand you unconditionally like helps in the long run.

Rebecca Gillett:
Yeah.

PROMO:
If you want to learn more about juvenile arthritis and related diseases, count on the Arthritis Foundation. Explore our JA camps. The national JA Family Summit. And other ways to stay in touch and be in-the-know about everything JA, for juvenile arthritis. Visit www.arthritis.org/ja.

Rebecca Gillett:
Yeah, you guys were, presenters at our Juvenile Arthritis Conference. And so, you're used to doing the podcast. But with a podcast, we hide behind our mic, and we're not-

Beka Nicola:
(laughs)

Rebecca Gillett:
In front of people. So what was that like for you guys? What was that like for you to, be face-to-face with a room full of, of kids with JA?

Beka Nicola:
We were so nervous. And were like-

Rebecca Gillett:
(laughs)

Beka Nicola:
What kind of questions are they gonna ask us? Is it gonna be like, intense... Like, not inappropriate questions, but just questions like teenagers would wanna know. Like, drinking, partying... Like I kept teasing Bri, it's like sex, drugs, and rock and roll.

Rebecca Gillett:
(laughs)

Beka Nicola:
And we're like ready to dive (laughs) into it, but they were really just so focused on like their own like diagnosis journey. It almost felt like we were talking to like our friends. Like it was-

Rebecca Gillett:
Right

Beka Nicola:
It took a second for them to kinda warm up to us in the first session. But then I feel like once we just kinda laid it out there to them, and-

Rebecca Gillett:
Mm-hmm.

Beka Nicola:
We started having some natural conversation, it, it was nice being able to hear their viewpoint on things as well, too.

Bri Ramos:
For sure.

Beka Nicola:
And there were some siblings there.. they were just so focused on how they could help their siblings, and get a better understanding... That it was just a really good, like feel good moment.
 
And we knew some of the kids. Like, Bri met one of her campers-

Bri Ramos:
Yeah, like my old-

Beka Nicola:
Like, in the elevator.

Bri Ramos:
Campers from like years ago was there. And I was like-

Rebecca Gillett:
Oh my gosh.

Bri Ramos:
Oh my gosh! Like, I can't believe it's you, and like his mom and everything. But I mean, it's been a few years since I've been to camp in person. I thought it was so amazing, having the whole families involved. Like Beka was saying-

Rebecca Gillett:
Mm-hmm.

Bri Ramos:
Seeing the siblings in that room...
 
I have two younger sisters who were always looking for the best ways to support me and still are. My husband was there with us too. And like, I got to see him experience that for the first time. Like, all of the stories coming out in one room at, you know, one time. And it's just like-

Rebecca Gillett:
Right.

Bri Ramos:
I get chills thinking about it. It was just like... It's a, like, emotional weekend, in a good way though. Like-

Rebecca Gillett:
Yes

Beka Nicola:
Mm-hmm.

Bri Ramos:
You were saying, it just like revs you up to, back to the mission, and why we do what we do, and we spend all this time and, you know, energy, providing these resources, and sharing our stories for a reason. Um, and that's exactly why we do it.
 
PROMO:
All over the country we have support groups to help you manage your arthritis. Groups may meet virtually or face to face, depending on your location and the pandemic. Connect with others who care at https://connectgroups.arthritis.org/.  

Rebecca Gillett:
I know that everybody liked hearing from you guys and being able to ask questions. We recorded your sessions. And so we're gonna play some of the audio from the conference to see what the kinds of questions that you know, young adults, teens, and kids were asking you guys.
 
And I think it's relatable to whoever's listening. So, the first question…

JA Conference Attendee 1:
When did you guys start working within The Arthritis Foundation or getting involved?

Bri Ramos:
The first thing I did for The Arthritis Foundation was Camp JRA. It was in Pennsylvania, one of their arthritis camps. It changed my whole world, that camp did, just talking with people like me, seeing other young adults who were the counselors, and running the camp, it just provided me so much hope that I could have, you know, a "normal" life. And I could still do all of these things. It was the first time I got to meet kids, you know, with arthritis.
 
And since my experience at camp, that's just been my driver this whole time. Why I volunteer with The Arthritis Foundation, why I, fundraise for The Arthritis Foundation, why we do everything we do. Because they offer things like camp, which just changed my world.

Rebecca Gillett:
Yeah, that's awesome.

Beka Nicola:
For me, I was diagnosed at nine, but did not get involved with the foundation till my early 20s which I definitely regret. But I was able to kinda get plugged in through The Arthritis Foundation through the Jingle Bell Run. I first kinda just signed up to help volunteer and do the run with like one or two friends. And then, you know, the next year, my team slowly grew to my family. And then, the next year, some other friends. I think, this is my sixth or seventh year now.
 
It's just one of the things everyone looks forward to every year. They love to not just donate, but dress up in our holiday attire and, just support me and other people that are there. So I definitely recommend to those when you get diagnosed, to just explore all The Arthritis Foundation has to offer. Find your community within The Arthritis Foundation. I think it's super important to do that. I know, whenever I hear Bri talk about camp, I get so jealous-

Bri Ramos:
(laughs)

Beka Nicola:
'Cause I'm like, "I wanna go to camp. I wanna be a camp kid." And I just think about all the summers that like my mom and dad offered. Like, "Hey, do you wanna do it?" And I always turned it down. And don't be like me, and try to get involved as soon as you can.

Rebecca Gillett:
Well, and you know, for any adults listening, of course, and any other listeners, there's always volunteer opportunities. And anything that you find, whether it's an event like Jingle Bell Run or the Walk to Cure Arthritis, but any of the juvenile arthritis events... It will change your life. I promise. I think there was another teen that asked a question who was a sibling.

JA Conference Attendee 2:
Is there a way I can like sort of subtly start to help him like, off him help without it being super obvious that I'm his little sister doing stuff for him?

Rebecca Gillett:
Which, I think that's, that's hard for siblings, right? And it's hard for you as the one with arthritis, 'cause you don't wanna always feel like you're having to have your sibling help. How would you respond?

Beka Nicola:
I, first off, am trying to think about being in that moment when the sibling asked how to help their sibling, and just how impressed I was. And I remember talking to my siblings afterwards and asking them. Because I feel like I was so reserved, I didn't wanna ask them. And they were like, "Well, I did stuff without you like having to ask." It just kinda became like a routine. Like, my older sister was like, "I opened water bottles for you." Or my little sister helped me do just different tasks around the house.
 
And just things, you know, not push me if I said I'm not feeling good. Just kinda be like, "Okay, like let's try it again later," I know my biggest advice for siblings, like, obviously be a listening ear. And to just try and understand... Like they might not want help right now, but just to make sure to let them know that like you're in their corner. You're on their team, and you're there for whatever they need, when they need it.

Bri Ramos:
Yeah, I totally agree with what Beka just said. I had the same reaction when the sibling stood up and asked this question at conference. I was like, literally shook, because I was just like, oh my gosh. Like, my heart. It was just so sincere and so kind, that I- I talked to my, I have two younger sisters after about it as well.
 
A lot of the same things Beka was saying, opening water bottles, lifting heavy things for me. But also, like, educating themselves, and like, as much as they could, to understand what I was going through. And also so they could like serve as an advocate for me, amongst their peers as well.

Beka Nicola:
I remember being there and talking about how my siblings always let me have the front seat-

Rebecca Gillett:
(laughs) Yeah.

Beka Nicola:
On like family trips and vacations. And I remember all the kids were in an uproar. They were like, "What!" Like, "My siblings-"

Rebecca Gillett:
(laughs)

Beka Nicola:
"... don't do that for me." And I'm like, "Oh, wow." Even to this day, I’m almost 30. And my family always knows, I go in the front seat, like no matter what. Just-

Rebecca Gillett:
(laughs)

Beka Nicola:
You know, because of it. So I thought that was kinda funny. They're like, "No, there's no way they would let me do that." But think you just end up kinda getting into a routine.

Rebecca Gillett:
Right.

Beka Nicola:
Where you're not even having to ask. It's just kinda like second nature, if you will.

Rebecca Gillett:
Oh, yeah. I, um... (laughs) The water bottle thing never ends, right? I don't even have to ask. You just like hand it over or if we go somewhere we're buying it, like, my husband will just automatically take it, and open it, and, and then make it so that I can open it when I want it. Right?
 
I mean, that's something (laughs) anybody can relate to, who has pain in their hands. we have another question about just changing over the years, how it feels.

JA Conference Attendee 3:
How has your arthritis gotten, like how has it changed over the years? Like easier or harder to manage?

Bri Ramos:
This was such a tough question, I remember, when they asked this. It's like, my arthritis has changed a lot. I feel like I've learned better ways to manage it, but sometimes it feels like at the same speed that I'm learning about it, it's like changing.

Rebecca Gillett:
Yeah. (laughs)

Bri Ramos:
So, it's (laughs) like... It's like tough to answer the question. I don't (laughs) know. Beka, you can go-

Rebecca Gillett:
It's a hamster wheel.

Beka Nicola:
Yeah.

Bri Ramos:
Yeah.

Rebecca Gillett:
It's a hamster wheel with like some obstacles, but you're still going (laughs) in a circle.

Beka Nicola:
Right. I would love to say that it's easier... Like I would love to say that, (laughs) and give that positive outlook. But I feel like you just learn to manage it better while it changes.

Rebecca Gillett:
Yeah.

Beka Nicola:
And there's a lot that goes, I feel like into having arthritis, that some people, again, it's not just physical. Like, I remember when I graduated high school and became a young adult, like I was making my appointments. I was calling-

Rebecca Gillett:
Mm-hmm.

Beka Nicola:
The insurance company and memorizing the codes, and asking why they coded to this instead of this?

Rebecca Gillett:
(laughs)

Beka Nicola:
And why is it X amount and this amount? Once you get older, I do feel like it kinda gets harder in a sense because, yeah, your body's changing.
 
From a nine-year-old to almost 30, my body has changed a lot. Your environment could change. Like, I was in Georgia, then I was in Florida. Now, I'm back in Georgia. So I'm even, now, kinda relearning my body as the weather and my surroundings are changing.

Rebecca Gillett:
Oh, yeah.

Beka Nicola:
That question was hard. I feel like the kids were kinda looking for us to kinda give them a little bit of reassurance that it gets better and easier. And I think we had to like to take that second to like be real with them and be like, listen... It is gonna get hard. Like being your own advocate is hard. When you have your school plans and all of that, like, you don't necessarily have someone help you when you're older. You have to be your own voice.

Rebecca Gillett:
Right.

Beka Nicola:
I hope that resonated a little bit with them and kinda empowered them a little bit. Like not necessarily scared them, but just you know, let them know, like, they could face this kinda head-on.

Rebecca Gillett:
Yeah. That's a very hard question to answer. But what you gain over the years, what I think a lot of kids with JA that I've met who are now adults, is wisdom, right? You go through all the changes, and everybody does, right? But the wisdom to know that you are going to come out of this. You have found ways to deal with it. You've met people and connected with people who can get you through it.
 
And I think that, that's the difference. 'Cause I've always said, every JA kid I've interviewed, my husband and I have done videos for our walk, honoree kids, and I'm always... Come away with that, of course, in tears. But also, everybody has like an old soul. And I think, to me, that's the wisdom of having to go through all of the things, and it became your norm, but you've had to deal with a lot, right?

Bri Ramos:
A hundred percent-

Rebecca Gillett:
And all of us deal with a lot, right? Like, the world's a little crazy these days, but we're all dealing with a lot. So, when you see that in somebody who's so young, to me, that's inspiring. You just know, like, okay. I've dealt with (laughs) this crap before. I'll get through it again, but give me a moment to feel all the feels, you know after a certain age, like, you know you can't-

Beka Nicola:
Mm-hmm.

Rebecca Gillett:
Run away from it. And you can't ignore it, right? You get better at that a little bit. You're able to articulate it as well.

Beka Nicola:
I had this happen in real life last week. A JA mom asked me if I was like still in pain and how I was like managing it. And I was like, I knew she needed like... Didn't need to hear me say, "Yes." You know?

Rebecca Gillett:
Yeah.

Beka Nicola:
And I kinda said, she's gonna be so much more, mature because of it. She's gonna learn to manage it so well. You're doing so much for her right now just by being here. It's tough to be put in that position. (laughs)

Rebecca Gillett:
Yeah. I think we have another question.

JA Conference Attendee 4:
How did you find the balance of leaning on friends and family, um, while still remaining independent and in control of your own care?

Beka Nicola:
I know, for me, hearing that... I mean, gosh, it just sounds so way older than beyond their years.

Rebecca Gillett:
Right.

Beka Nicola:
But I was telling them, it took me a long time to lean on my family, my friends, like even telling people. But I think once I was in college and kinda owning more of like my appointments, and just my every day-to-day, I think that's kinda when I realized, you know, I needed to be independent, and I needed to be in charge of my own care, 'cause someone wasn't gonna do it for me anymore.
 
I think that once I kinda checked myself and (laughs) reflected on myself, then everything else kinda fell into place. Then it was like, okay, cool. I could rely on my family or my friends to give me a pep talk before my appointments. Or you know, one day, I had a rough doctor's appointment. I was on the phone with insurance companies all day, and I could cry in my room to someone. You know, like, just little things. But I also think it's just comes with time. And I hate saying that, but I just feel like, the more you get involved, and the more you're exposed to, the more you can learn your body, and your routines-

Rebecca Gillett:
Yeah.

Beka Nicola:
And habits, and things as well.

Bri Ramos:
Yeah. I think so... Like when I was first diagnosed in those first years, before I went off to college, I really like relied on my family so much, too much. My mom will still like, I don't wanna say babied, but I like relied on them a lot to do things for me, probably more than I should have.
 
Then I went off to college, and then, just like, was 100% independent, and not open, and not talking. It went from like one extreme to the other.

Rebecca Gillett:
Yeah.

Bri Ramos:
And then, I had to like (laughs) learn to find that balance again. I'm at that point in my life now, 10 years later, where I have found (laughs) that balance.

Rebecca Gillett:
Yeah.

Beka Nicola:
And I think it's understanding, like, the difference and being able to... Like, I know my husband calls me out sometimes, and I know my sisters do. And it's like, is this arthritis related? Or do you just not wanna do it? Or do you just not enjoy this?
 
So it's like, finding that, okay, am I using this as a crutch? Am I using this as an excuse? Or like, am I truly hurting? Am I truly in pain? And not being like offended that they're like checking you, if you will, in a way.

Rebecca Gillett:
Mm-hmm. (laughs) Yep.

Beka Nicola:
But just, they're trying to communicate and learn. Like, there's been plenty of times... And I will literally tell my husband like, "Yeah, I just don't feel like doing it. It's not arthritis related. I just don't wanna do it." You know? And he's like, "Okay, that's fine."
 
Then, there's some days where I'm like, I want to do it. And I'm like so upset. And I'm like crying in pain, and I just can't do it. And he gets it too. So, it's just trying to find that open door to communicate, I think, is just so important.

Rebecca Gillett:
Yeah. Communication is key, right? But it's funny that you say that. I think you know, when you have your partner, or your spouse, or your caregiver, your loved one, whoever helps you, and you lean on... When they can call you out like that, that's when you know they truly do understand what you're going through. But I know a lot of people struggle with that, right? Loved ones understanding the kind of pain they're going through, but it's an education process that never (laughs) ends, really. Right? Um, it really never ends.
 
We're always educating those around us. Sometimes that gets exhausting. So sometimes, it's easier to just say, (laughs) "Yeah. Yeah, I just don't wanna do it." Right?

Bri Ramos:
(laughs)

Rebecca Gillett:
But you have to be able to just communicate that, you know? I love that honesty, right? Um, my husband checks me all the time, 'cause-

Beka Nicola:
(laughs)

Rebecca Gillett:
Sometimes I have these grand ideas. And he's like, "Hm... Yeah, not smart for your wrists. Give me that," you know? We all need that. We need somebody who can help us, take care of ourselves, 'cause sometimes we're a little too headstrong. I think there's one more clip.

JA Conference Attendee 5:
How do you deal with sports and like being able to talk to your coaches about it?

Rebecca Gillett:
This is a question that I think I know I’ve… And, this can apply any age, right? How do you deal with like wanting to do stuff with groups of people? Yet, you know you're limited.

Beka Nicola:
I know, for me, like I, I feel like this first question came more directed to me 'cause I was pretty honest with the kids. Like I was super involved with soccer, basketball, swimming... And growing up, I kinda relied on my parents, that kinda told coaches. But then as I got older and like high school age, like I really had to own it.
 
In middle school, it was hard. The coaches were like, "Okay, instead of running the mile, you can walk along the track or walk around the grass." Or do this... And then my friends were trying to walk with me. I'm like, "No, like, you know, you're... This is try outs. You need to go do your own thing. Let me do this." And they just couldn't understand, why are you doing it this way? And we have to do it this way. Or the coach is like not understanding that, one day, I could be able to go full out, and the next day, I might have to sit on the sidelines. Like I just am having a flare up, and them not really understanding what that means.
 
So, I think, it's just the comfort level, and just being able to understand, one, that like they might not understand. And two, like, how you can explain your body to them. And I know we talked with the kids to like maybe kinda come up with some solutions too. Like instead of like sitting out, why don't I walk the track? Or instead of doing stadiums, let me do like an extra three laps or something like that. So it just shows like, just your commitment. You know, not just to your coach, but to your team. That you wanna be involved, and you wanna play, but you just might have to modify some things. So I think that was kinda the biggest take-away from that question that I had. And I know Bri was really involved with cheerleading and things right when she was diagnosed too. And she had some good advice for the kids too.

Bri Ramos:
Yeah, I really struggled in high school with teachers, and staff, and administration not understand whatsoever. It was very, very bad. you have to find your balance of what you can and can't do. Find the modifications that work for you. Talking to coaches and adults though, as like a kid at school, is scary.
 
If you don't feel comfortable advocating for yourself in that situation, do it with a parent. Do it, you know, in a scheduled meeting kind of setting. Don't feel like on the spot to do that, because that's really tough.

Beka Nicola:
Totally agree.

Rebecca Gillett:
Just like going to a doctor's appointment with somebody, having a friend or a loved one come with you.

Beka Nicola:
Yeah.

Rebecca Gillett:
But the same thing can apply to work. There are a lot of people who don't share their information. And you don't have to when you're at work. But, um, if you need accommodations, you know, they're afraid to ask for that. Don't wanna be judged or thought of that way. There is the ADA laws for a reason. And so, I think it just applies to anything that you do as you go along. It just changes the environment that you're in that you're asking, right?

Beka Nicola:
Mm-hmm.
 
Rebecca Gillett:
You spoke at the conference to three different age groups. And they range from like middle school, to, to young adult. What kind of advice would you give to those who are transitioning? Beka, you mentioned earlier how you start having to make your own appointments and advocating for yourself. Are there any specific tips for those teens who are transitioning to, handle their care?

Bri Ramos:
I was so honest about this at conference. Like, it's hard, and it's not easy.

Beka Nicola:
Yeah.

Bri Ramos:
Start doing little things before you make the big transition. Go into an appointment by yourself. Call to make the appointment, things like that. So, like when you are like 100% on your own, that you kind of like know some things at first, but.

Beka Nicola:
And I think it's important, to make like a transition plan with your parents or partner. As a kid going to adult world, like how Bri mentioned, like doing appointments on your own, or understanding how to talk to the insurance companies. I think that was my-

Rebecca Gillett:
(laughs)

Beka Nicola:
Biggest struggle for (laughs) me. Not being afraid to like spend a couple extra minutes, like, to really just under- I mean, I still don't understand it. And every time, it's a whole-

Rebecca Gillett:
Nobody does.

Beka Nicola:
Another ordeal. if you don't get the answer to keep calling and keep asking, but don't be afraid to ask again. I think that's really important.

Bri Ramos:
Right.

Beka Nicola:
Sometimes, people might get discouraged if they... Not that if they don't get an answer they're looking for, but if they don't get like clarity, that they just won't ask it again. But just-

Bri Ramos:
Right.

Beka Nicola:
Keep kinda running tabs. And Bri has this really great like medical journal-

Bri Ramos:
(laughs) I was like- (laughs)

Beka Nicola:
If you will. I'm plugging it. It's incredible. And it's helped me get a lot more organized. Even like my husband, today, like, I had a little bit of a flare up. And he's like, "You need to be using that journal more," and like really understanding and like-

Bri Ramos:
(laughs)

Beka Nicola:
Recording like what's going on so you can articulate it. And being able to do that younger and in that early diagnosis-

Rebecca Gillett:
Mm-hmm.

Beka Nicola:
Is I think just so, so important.

Rebecca Gillett:
Oh my gosh, yeah.

Bri Ramos:
You'd be surprised how much having a good support system for like the transition times helps too.
 
It’s so important to have a support system in place, even for things like that, like the transition period. And I mean, I'm not really transitioning (laughs) anymore for, to adult care. I am in adult care, but it's just so helpful to have people to talk to.
 
PROMO:
Your donation to the Arthritis Foundation goes directly toward arthritis research and resources. Like our community-based programs for juvenile arthritis, or JA. Scholarships for our JA camps, plus our national conference, support groups, medical research and more. Help keep us going strong at https://www.arthritis.org/donate.  

Rebecca Gillett:
Thank you guys for being at that conference, volunteering your time, sharing your stories, and, and hopefully inspiring and empowering some other young adults and teens to, to take control of their arthritis. But also for just sharing your story with all of our listeners today.
 
Before we go, we always end our podcast on our top three takeaways. What your top three takeaways are from our conversation today.

Bri Ramos:
We talked a lot about communication, and communicating... I think communicating honestly with your friends, your family members, your like partner, whatever that looks like, doctors, and yourself. Like, being honest with yourself. Like, I really need to slow down today, or I really need to schedule an appointment with my rheumatologist and talk to her about this, or anything. Just doing that communicating, but also being honest about it.

Rebecca Gillett:
Yeah, definitely.

Beka Nicola:
And I think another takeaway, just you're not alone. There are other people that you know can relate to you and maybe you can learn from or they can learn from you. And I think it's super important to find your people, whether it's your friends, your family, again, your partners. You know, be comfortable with yourself, but also don't be afraid to reach out to some other people.
 
The Arthritis Foundation's here to support you. There's a community out here, even online. We've met a lot of people through our Instagram page, Facebook pages, and stuff that go through similar experience. So just find others that you can kinda rely on and also that you can kinda listen to, just so you don't feel like you're alone.

Bri Ramos:
Our last take-away is, you know, something we try to talk about a lot already, Beka and I. And it sucks that we have arthritis and we were, you know, dealt this card, but this is our life. And we're just doing the best we can to make the most of it. We're not like gonna push, you know, everything happens for a reason. We're not gonna push the positive mantras on everybody. But just finding the small things, we're big advocates for that, to stay positive, and really... I mean, just make the most of every single day.

Rebecca Gillett:
I love it. That's one thing I loved about this conversation. 'Cause you know, while we've had three very different journeys, we've all been through the same thing, right? And still go through it. Thank you, guys,  for being role models for our community, and for sharing your stories, and doing the things that you do to, to reach out and, and help others.

Bri Ramos:
Well, thank you for having us. If we didn't say it enough, we had an amazing time at JA Conference and are excited for Atlanta next summer. It was just an amazing experience, and we got to connect with so many people. It was just awesome. (laughs)

Beka Nicola:
Yes, totally agree. It's just like we mentioned earlier about finding that community. It's just very nice, to be reassured and reminded sometimes. But it was such an incredible experience, being able to listen and chat with some of those kids in the sessions. And even sit in on some other sessions, very eye-opening and just good feeling.

Rebecca Gillett:
Well, thank you, for joining me. It's been great. I wanna also remind our listeners, you know, Bri and Beka talked a lot about our juvenile arthritis events, and conferences, and camps. If you don't know a lot about juvenile arthritis and you wanna learn more, our website is the best place to go, so check it out, arthritis.org.
 
You can find information about juvenile arthritis. You can find information about how to volunteer or get involved. Another thing that just recently rolled out, are our connect groups. Those are our virtual, national connect groups which are like support groups. You might find your group and your tribe. So, check out Connect Groups. Go to our website at arthritis.org for any of this information. Thanks for joining us.
 
PODCAST CLOSE:     
The Live Yes! With Arthritis podcast is independently produced by the Arthritis Foundation, to help people living with arthritis and chronic pain live their best life. People like you. For a transcript and show notes, go to https://www.arthritis.org/liveyes/podcast. Subscribe and rate us wherever you get your podcasts. And stay in touch!   
 
 

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