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Patient Stories, Podcast

“Camp is Where She Can Be Herself:” The Importance of Community with JIA

June 29, 2022
74 min read
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Summary:

Growing up with juvenile idiopathic arthritis (JIA) can be very isolating. From pain and fatigue to doctors appointments, children with JIA often miss out on “typical” childhood experiences such as summer camps.

In this episode, parents Leeza Broome and Courtney Bruce share why arthritis-specific summer camps have been such a lifeline to their families over the years. As volunteers, they helped start the very first Pacific Northwest family camp for kids with arthritis, “KAT-Fish Camp,” which has historically been put on by the Arthritis Foundation. 

Cheryl also shares her experiences volunteering at the camp. All three speakers share their favorite camp memories from the last two decades and explore the importance of community and belonging in chronic illness communities.

Video

Episode at a glance:

  • Courtney shares her daughter’s diagnosis story at 18 months, which started with a swollen knee and a misdiagnosis.
  • Leeza shares her son’s diagnosis story, which started with difficulty getting out of the toddler bed and swollen fingers.
  • Why is it important to have family camps for kids with juvenile idiopathic arthritis? Leeza and Courtney share what they’ve learned in the parent education sessions, from advocacy to emotional tips for coping with injecting a child who’s afraid of needles. Cheryl, Leeza and Courtney explore the emotions that parents, children with JIA and siblings experience at these camps including: relief, shared anger at similar negative experiences people have gone through, envy, hope and more.
  • Favorite camp memories: all three speakers share their favorite memories, from S’Mores and campfire songs to talent shows. 
  • Where can you sign up to volunteer at a camp or attend one? Links below!

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Join the waitlist for the next group, which starts in September 2022!

Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis. 

Speaker Bios:

Leeza Broome – I am the mother of a 14-yr-old who has been dealing with JA since he was one and a half. We’ve been through so many appointments with specialties, many illnesses, different joint and eye involvement, and have missed out on so much school and just being a kid. I became a volunteer for The Arthritis Foundation to take back some control, and help my son, and the many thousands like him. 

Courtney Bruce – I have Osetoarthritis in my knee due to a traumatic injury years ago. That was diagnosed 18 years after my daughter’s diagnosis.  Our family journey with arthritis started 22 years ago when our only child was diagnosed with Juvenile Pauciarticular Rheumatoid Arthritis at 18 months of age. As she grew so did her arthritis, changing her diagnosis to Juvenile Polyarticular Rheumatoid Arthritis involving her ankles, knees, wrists and the hardest to manage, with the  most damage done to her jaw. 

We became involved with the Arthritis Foundation when I saw an ad for an arthritis walk in 2002. After meeting some staff, I was hooked and have been a volunteer since in some capacity.

Cheryl Crow: Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

Cheryl’s Arthritis Life Pages:

Full Episode Transcript:

Cheryl: 

I am so excited today to have Leeza Broome and Courtney Bruce here to share their experiences being parents of children with juvenile idiopathic arthritis, or now young adults with juvenile idiopathic arthritis. So, first, I just want to have Courtney introduce yourself. Can you tell me a little bit about yourself like where do you live, and what’s your relationship to juvenile idiopathic arthritis? 

Courtney:

Yes, definitely. I live in Tacoma, Washington. Born and raised here all my life. We have a daughter, Taylor Bruce, who was diagnosed about 22 years ago when she was 18 months of age with juvenile rheumatoid arthritis. The actual title we were given at that time was ‘posiarticular’ which means four or less joints. As she grew, so did her arthritis. And it changed to polyarticular, which means five or more joints. She was diagnosed in 2002. We happened to see an Arthritis Walk advertised on TV. And I thought, “I can do that. I can raise money, I can do this.” And so, we packed up the car and she and I were at the walk. My mom came with us and a high school friend, and that was our team. And so, Taylor was in the stroller, and we walked Green Lake. We met some awesome, awesome staffers and Joanna Lindsey was one of them. And I was hooked. 

And ever since then, I’ve been a volunteer in some form or capacity for the Arthritis Foundation. We went to day events that they would hold for us. And there was a couple of their families at the time that we really bonded with and still are really good friends with. I’ve been to weddings, I’ve been to graduations, baby showers with those kids. And those core families and our family helped put a bug in the air for the Arthritis Foundation. And Joanna listened. 

And Joanna helped us set up the very first camp, KAT-FISH Camp, which was in 2004, and there were 16 families from that. Back in 2019 was our last in camp due to COVID. We had 70 families. That also spurred off Camp Jam, which is in Oregon, and Camp Arctic, which is in Alaska. And it’s just an amazing camp that we adore. And I have met so many good friends, so many families. My daughter met some really good friends that she’s still really good friends with today. And it’s just, the Arthritis Foundation has given us so, so much that I just need to give back. And it’s a very positive way for me to deal with my daughter’s diagnosis when sometimes it’s a very hard disease to deal with. 

Cheryl: 

Wow, I’m in awe of that. And I actually didn’t know the camp was so recent. Like, when I first volunteered it was either 2009 or 2010. And it was already very big at that time. So, only five years after you started it you really managed to grow, you and other volunteers and the staffers. You know, when I started volunteering at the camp, there was Andrea and Joanna; it’s such like a dream team. So, yeah, we all — I’ll just say sorry for those listening who are like how do you all know each other. Come to Washington, it’s only about an hour away from Seattle area where I was born and raised. And so, I’ve met these two wonderful women through volunteering at the Juvenile Arthritis camps, Catfish Camp, and through the Arthritis Foundation. So, thank you. Thank you. You put like a perfect summary. But now I want to give Leeza the microphone, literal and metaphorical microphone. What’s your relationship to juvenile idiopathic arthritis?

Leeza: 

Started out pretty similar. Hi. Thanks for having us, by the way, this is so great to be able to talk about what we’ve been all going through for so long. So, my son Kyle was diagnosed when he was about a year and a half old, about the same as Taylor. He was 18 months. And basically, we just, we were very lucky on getting diagnosed quickly, but we can get into that more a bit later. So, I was going to rheumatology at Children’s with Kyle, you know, we had all our appointments in Seattle. And finally, one of the nurses mentioned this camp, Catfish Camp for families, whole families dealing with juvenile arthritis together. Kyle was diagnosed similarly with posi, but then they actually changed the name of his diagnosis to oligoarticular. And then it went into extended oligo. So, he does have more than five joints at this point. It’s gone into his jaw and his eyes as well, but they just call it extended oligo now. So, we got very excited when we heard about this camp and thought, oh, that would be great to meet other families, you know, because we were still very new. 

When we heard about it, he was four or five. So, his first camp was when we were five, or when he was five. And it was just incredible from the first moment. Everyone was so inviting and so welcoming. And we realized we knew practically nothing. You know, I did all the research as a mom you can do, I took home all the pamphlets from the doctor, and I listened to all the current research and everything I could find. But I didn’t realize how involved the disease was until I got to meet other families dealing with it. We didn’t even know that fatigue was a huge part of it. And that was the big thing for Kyle. We could never understand why he was so tired all the time. He didn’t want to play like other kids, he wouldn’t play on playground equipment because he was in pain. But also, he would get tired throughout the day. So, I learned that from other parents, you know. Like I always tell everyone, you don’t get as much time with the rheumatologist as you do with the other parents. So, you can only learn so much in clinic and I learned so much more with the families. 

And I have seriously gotten lifelong friends. I count you two among those. But really, the JIA family is family. And I don’t say that lightly. I don’t call anyone really family unless they’re really, really my family and I will, we have these relationships for the rest of our lives. Kyle has friends from this. Even our youngest, Ryan, who is a sibling going to these camps since he was a baby and just enjoying himself, we all have friends. Lifelong family and friends from this camp. 

Also, I wanted to say I did become an Ambassador talking to Joanna Lindsey as well. She recruited me at camp and I was really nervous at first but she talked me into it. So, I’m also an Ambassador for the Arthritis Foundation. I have been on the planning committee for a walk, I volunteered at Jingle Bell Run and a bunch of other events that the Arthritis Foundation puts on, but Catfish Camp is my favorite. It’s very near and dear to our hearts.

Cheryl: 

Yeah, we have many pictures over the years of the different Jingle Bell Runs and the KATFISH Camps. I mean, I say as somebody diagnosed at age 20 with adult rheumatoid arthritis, I was like, we need camps for all ages. Because, first of all, you’re never too old to have fun at camp, but second of all, it can be a very lonely path, you know, getting diagnosed with something that is so misunderstood, like, you know, a rheumatic disease or any autoimmune disease, really. 

And so, yeah, you’ve already touched on so many things I wanted to ask, but, you know, I want to just quickly, I always start with the diagnosis journey or diagnosis story just because that can be such an emotionally challenging time in in one’s life. And I know you both already touched on the age, you know, both of your children were like a year-and-a-half around when they got diagnosed. But what was — can you, I’ll start with you again, Courtney. Like, walk me through a little bit, like what was it like to hear that your one-and-a-half-year-old had something that might have something to do with arthritis? Like, whoever thinks that that could be something that could affect a child, right? What was that like?

Courtney:  

Terrifying. Terrifying, honestly. I come from a medical background. Before Taylor, I was a veterinary technician, which is a nurse for animals. And so, I had some medical background from that. When I was pregnant with Taylor, I decided to switch gears and got into human medicine. And so, worked with pediatricians, family practice, so on, and it’s gone from there. So, I had a little bit of knowledge, which may be dangerous, to be honest. Taylor is our only child and she was 18 months of age, like I said, when she was diagnosed, and actually the daycare kind of helped us out with that because they thought maybe her shoes were bothering her. She had newer shoes and so they thought maybe that was an issue because she started to, she was walking but she reverted back to crawling and scooting to get around. And she walked in a different pattern that we didn’t notice. At the time, it was in both her ankles, and her right knee, and happened to be in her little pinky finger. Taylor was a very chubby baby, so didn’t notice, honestly, any swelling at the time. Her ankles were the same. So, they were both swollen. I didn’t recognize that. And I don’t know how we didn’t recognize that her knee was swollen. But we just thought, well, you know, we’ll check and see what we need to do. So, we called pediatrician. Pediatrician, said, “You know, I’m going on vacation. It might be smart for you to come on in and get checked out.” 

So, she did lab work, she did X-rays, where they did a frog kind of position where they moved her knee. And at the time, that’s when I saw it. And I thought, “How the heck did I not see this before? What is wrong with me?” And so, a lot of blaming. “Where did it come from? How did she get it?” The doctor called us that night, she, like I said, was going on vacation. So, it was about 10 o’clock at night when she called me. And she said, “Courtney, I got some news,” and she said, “With the labs that are showing, it looks like there’s some infection going on.” And she thought it was a knee infection. And so, she says, “You need to call in tonight to Mary Bridge Children’s Hospital in Tacoma and get admitted. And she needs to get on IV antibiotics right away, or she’s gonna lose that knee permanently.” That was a shock. So, I called my husband and I said, “I need you home. We’re going to the hospital.” Called my parents. I said, “We’re going to the hospital.” They ended up meeting us there. Called my boss and said, “I’m so sorry, but I’m not going to be in work tomorrow. And I honestly don’t know when I’m going to be back, but I will keep you apprised of what’s happening.” 

They admitted us to Mary Bridge that night. And she and I were staying there and had a nice little hotel state. We were there three days, where they did labs, pokes, prods, imaging, full body scans trying to figure out what was wrong with my girl. And nothing was really catching as to — it was not a knee infection. There was something more to it. That was in May. We went to Children’s Hospital in July, here’s when we were able to get into Children’s Hospital. And then they gave us the diagnosis that was taller than she was. And I totally remember my mom writing down in the notebook, and he said she had polyarticular juvenile rheumatoid arthritis. And my mom said, “Can you spell that?”

Cheryl: 

Yeah, that’s a lot of syllables. 

Courtney:  

Yes. So, she was riding down — pauciarticular, I’m sorry, is what they diagnosed her with. It was a scary two years because honestly, I had tried. I looked for Mary Bridge trying to find a support group for children. I called the Arthritis Foundation at the time, there was not one. In fact, I laugh about it now because the volunteers said, “Well, would you like to facilitate a group?” I don’t even know what I’m doing. How can I help others? But now I do. So yeah, it was a scary two years until that Arthritis Walk and when I saw that ad on TV, it was like, light bulb flipped. And that was the beginning of this crazy journey we’ve been on.

Cheryl: 

Yeah, no. And, you know, I want to link this into advocacy just very quickly that there is a shortage of pediatric rheumatologists in the United States, which I know both of you know more about than I do. But this point last I heard there was 350 pediatric board-certified rheumatologists in the entire United States and like over 10 states don’t even have a single one in their states. So, you know, even just getting into Children’s within two months, at first you think, “Oh, my gosh, wait. That’s way too long,” but some places, it’s even like six months or a year they have to travel. Like, the people from Alaska have to fly down here. So, you know, but sorry, that’s just a side note I want to plug in somewhere into this episode. 

But also, I just, I want to just empathize or sympathize with the guilt that you felt, you know, when you found out that you know that your daughter had something wrong and you didn’t notice it. I mean, goodness, you know, a chubby 18-month-old, they all have big knees, you know, they all — I mean, so, it’s like, I’m tempted to just be like, it’s not your fault. I know that you know that logically, it’s just emotionally hard not to feel like, “Oh, I should have, I should have known,” or, you know, it’s something that we all go through because we all want a reason. I mean, I found out a couple years after my diagnosis, my mom was feeling guilty because she was like, well — it was actually, I mean, it was so adorable, but I know she listens to the podcast. Hi, mom. But she was like, “I just feel so bad for drinking so much Diet Coke when I was pregnant with you like in 1980. Like, we just didn’t know.” And I was like, it’s not because you drink Diet Coke. Like, you know, like, my great-aunt had juvenile rheumatoid arthritis actually, and, you know, like, it’s somewhere in my genes, and it just got triggered by something in the environment. But you can’t stop people from trying to find a reason for things. So, anyway. 

And I think — actually, I want to give, and I’ll give Leeza a chance to share a little more detail about yeah, that initial diagnosis journey and just, you know. Okay, before I share — oh, I’m so terrible at like, having a thought that completes — but I was just gonna say, in the disability community, I know that there’s a set of people who don’t think it’s appropriate to like center the parent stories when a child has a disability. 

And I actually kind of strongly believe that everyone’s story is worth being heard. And when a child gets a health condition, it profoundly affects the adults in that child’s life. And that story, I believe, should be heard. So, but for those listening, like, and I also feel that I have a little bit of ethical dilemmas. I really want — I’m a pediatric occupational therapist by training, so I want to interview all the kids with arthritis. But it gets a little bit, it’s a little bit more tricky, because, you know, it’s hard to consent to something being shared publicly when you’re young, you don’t really know what you’re agreeing to. So, anyway, I just want to acknowledge that like, I’m sharing, I want to know your experiences as mothers and parents, but that you’re also affected by this. So, anyway, okay, now I’ll let you talk.

Leeza: 

Totally fine. I agree with everything you just said. I really feel like it is a whole family, you know, journey. It isn’t just the child who goes through it. It’s all of us. So, when he was 18 months old, he couldn’t get out of his toddler bed. And we couldn’t figure out why. Like, why am I carrying you to the living room every day? Why can’t you get up? So, he said — or it was kind of like he couldn’t walk. So, I’m thinking, okay, are you giving yourself a dead leg when you’re sleeping? You know, are you just like sleeping really weird, and like cutting off circulation so you can’t walk? And that’s kind of what I was thinking. 

And then one day, we noticed that — and again, chubby legs, right? We finally noticed that his left knee looked like, like a golf — or like a tennis ball. And we’re like, whoa, how did we not notice that? My husband, Jack, and I, and then we noticed that he wasn’t using his fingers on his sippy cup. He was kind of like this, you know? And so, we thought, oh, he’s just very fancy, you know, we’re having tea. No, we realized that his two fingers on his left hand were swollen like bowling pins. 

And we, again, as Courtney said, how did we not notice this? Why didn’t we realize there was something more going on? We didn’t put the knee and the fingers together, you know. And then there was the ‘Aha!’ moment. 

And I was talking to my mom about it. My mom is, you know, she has a scientific background and probably looks up medical diagnoses for fun. She’s just, I don’t know, she’s like a fountain of knowledge. Again, like Courtney said, maybe a bit dangerous. Sorry, mom. But no, she had actually heard of juvenile arthritis. I had never heard of it. I had no clue kids could get arthritis. All I knew about was really osteo and, you know, rheumatoid, adult rheumatoid. 

So, that day when we realized these things, “Oh, there’s something here,” and said, okay, I’m taking him into his peds. His pediatrician got him in pretty quickly, which we were very lucky. We were also very lucky that his pediatrician knew about juvenile arthritis. A lot of the pediatricians aren’t trained for this. They don’t — it’s not in their purview. It’s not in their scope or realm of what they think of when they’re looking, you know. A lot of it is growing pains or, you know, what they had talked to Courtney about. 

But this particular pediatrician knew about juvenile arthritis and said, “I want you to go to rheumatology at Seattle Children’s.” So, we were very lucky. It only took us a couple months to get diagnosed, which is not usually the case. I will say we were one of the lucky ones from what I hear at camp and being an Ambassador and talking to families across the country. We’re one of the lucky ones that got diagnosed very quickly. 

They did the lab work, the X-rays, eventually had MRIs. Which, by the way, speaking of the parent experience, the first time you ever see your toddler go under anesthesia for anything because they can’t hold still during an MRI, the first time you experience that mask going on your child… It’s very, very emotionally draining. It is so difficult. And they’re all so wonderful with us. The nurses, the doctors have always been like, “Oh, you handled that great, you know, hugs to you.” Or Dad, if dad’s the one that’s there, “He’s been really great, too.” He’s taken on a lot of the responsibilities, which I’m lucky for as well. But it’s such an emotional journey. 

I think, besides seeing him go under for the first time, the worst, like really emotional part that Jack, my husband and I, had was when we were told he had to be on a specific medication injected at home once a week. A two-year-old. How do you explain to a two-year-old that you’re causing them pain to help with their pain and fatigue? That was the worst. We went home. And we tucked him into bed and we cried that night in each other’s arms, because it was just like, this is our life now. We have to, you know, essentially stab our child with a needle every week. And, and five weeks, a month, because he would also have to get lab work as well, so it gets very serious very quickly with this diagnosis. 

Cheryl: 

Yeah, absolutely. I mean, and that’s a huge learning curve for you to have to learn how to do the injections. Did either of you have a needle phobia, to begin with? You or Jack?

Leeza: 

Luckily, no. Out of my sisters — oh, sorry. Yeah. Luckily, no, I’ve always been fine. I was one of the weird kids that was like, “Oh, look at that.”

Cheryl: 

I’m the same. That’s what’s so funny. I have claustrophobia, very phobic about small spaces, but I’m not at all. Oh, that’s right. We’d share that. Needles. I’m like meh. Like, I’ve done dances and done, you know. But yeah, it’s just everyone’s different. But that would be, that’s just another layer of it.

Leeza: 

Yeah. I mean, Jack isn’t thrilled with needles, I think. He doesn’t express it. But I know he doesn’t like them. I think he does have a bit of a phobia, to be honest. And so, it’s hard for him especially. He’s very much a caretaker, he likes to fix problems. He’s a mechanic. And so, he can’t fix it. And that, to him, is so difficult, not being able to fix the problem for his child.

Cheryl: 

Courtney is nodding too. Has that been like a similar phenomenon in your life?

Courtney:  

As far as needles? No, I don’t have a phobia because being a veterinary technician, giving shots, IV therapy, drawing blood. That isn’t a big deal. But the thought of giving a shot to my child was a different story. Taylor was on oral methotrexate for the longest time. And she, Dr. Emery thought it would be best for Taylor to up the dose. And to up it, it would be better to do an injection rather than oral because it was so hard on the stomach. And so, she was trying to give Taylor’s tummy a break. And so, she wanted Taylor to get on to injectables. Taylor decided upon herself to do it for herself. And so, she did her own injections of methotrexate for the longest time. She was probably about 10, I believe, at that time. And so, she was giving herself her own injections, and I fully supported it and was going to help her if she needed me to do so. After a while, the methotrexate, for those that don’t know, is a chemo type drug. It’s a smaller dose versus what, of course, the chemo patients would receive. But they often feel very nauseated on this medication. Canker sores can happen. So, just kind of mild symptoms but enough to make life miserable. 

Taylor would often do her injections on the weekend, which made the weekend horrible, but at least she could get to school and function at school Monday through Friday. So, she chose to do the injections then. After a while, the injections just were just too much for her. And so, she went back to the next time we went and saw Dr. Emery at Seattle Children’s. She said, “Dr. Emery,” she said, “I can’t do these injections anymore. I want to go back on the tablets.” And here’s this 10-year-old little girl that’s been very much an advocate for herself. I was very proud of her. And I love Dr. Emery so much because she listens to the kids. In fact, she would often ask the child the question, and then, “Mom, is that right?” Just double checking back with us to make sure if that was the correct answer. But she always responded to the child and asked the child and communicated with the child so that they felt they were being heard, which I loved.

Cheryl: 

I love that. And that’s really a best practice, you know, in all of pediatrics, but it certainly doesn’t happen a lot of the time. So, yeah.

Leeza: 

I just wanted to jump in and agree with Courtney on a few things because similar stories, you know. I will say it actually was worse for Kyle on his stomach. So, he would get nausea every week. Not only what he worked himself up from the fear, and a lot of it was anxiety, and we kept telling him, let’s just freeze, you know, let’s count down, let’s do all the things. We basically had to start almost surprising him because if you let it go for too long, they work it up, work it up, work it up, and then, you know, they vomit right after. Sometimes during. And you can’t have your child going through that while you’re trying to inject them or right after, and it was such a horrible experience for all of us. 

Once my second child was born, they’re three years apart, and he was old enough to walk, we would start sending him to his room so he wouldn’t be in the room because it was just, it was such an ordeal. You know, one of us would have to hold them down. And then one of us would give the injection. And it was such a nightmare.

Cheryl: 

Yeah, and then you have — Oh, sorry. Yeah, keep going.

Leeza: 

Oh, no, go ahead.

Cheryl: 

I was just gonna say, it’s striking me thinking about, you’re going through all these experiences at home. And then I know for those like me diagnosed with adult rheumatoid arthritis, it’s people still have all these misunderstandings. So, you try to explain to people, “Okay, I have this thing. And it’s like an autoimmune disease. It has the word arthritis in it, but it’s actually a lot bigger.” 

So it’s like, you know, you’re saying to their, maybe to their school teacher or to your friend or your family, “Oh, you know, Kyle has juvenile, you know, polyarticular, whichever one it was at the time,” I mean, did you feel like anyone else could understand what you were going through at that time, other than your—?

Leeza: 

Absolutely not. Very isolating. He was in a troop at the time, and they just did not understand. You know, we even did like a presentation to explain it in one of the meetings because, you know, these are just things that most people, they have no clue about anything like this. Not just because when you think of arthritis, you’re thinking, “Oh, painful joints. You know, take some meds,” right? You know, that’s kind of how I felt people were looking at it. 

I’m like, no, you don’t understand. This is an auto immune disease. He missed so much school, because he would get sick all the time. Not only is it on an autoimmune disease, but also, they’re on immunosuppressant drugs. So, their systems are just, you know, are being hit left and right. And they just, he would get sick more often than the other kids, it would last longer in him. And so, we had to make arrangements with the school, and we could talk about that for years. But that’s such a huge thing for all of our families too, is trying to explain it to school officials.

Cheryl: 

Yeah, I’ve been horrified at some of the things I’ve seen, even I have to say, from other occupational and physical therapists, you know, documenting things like, “Oh, I observed the child playing on the playground for 15 minutes. Therefore, they don’t need accommodations.” Wrong! Like, a dynamic condition that changes frequently, you know, characterized by flare ups and exacerbations and maybe little periods of quiet disease activity, you cannot just observe a child for 15 minutes and say… 

Anyway, so, you know, it’s preaching to the choir. So, you know, it is huge, the repercussions of, you know, teachers and family members and other loved ones, you know, coaches understanding this. And I know that’s why you’re both such incredible advocates.

By the way, when Leeza said, she’s an Ambassador, we will talk more about that, that’s an official — that’s an Ambassador with an A, so we will explain that. Stay tuned. That’ll give you incentive to stay tuned till later. But yeah, so let’s talk more about the camp now. I know you’ve kind of already sprinkled that in earlier, but so we’re setting the stage here. 

You’re obviously going into this very isolating experience. So, what were some of the — gosh, how do I even ask the question? I mean, what were your first few camp experiences like? Maybe start from the beginning. How about you, Courtney?

Courtney:  

Oh, well, the first camp, again, like I said, we started was in 2004. And there was about 16 families. So, very tiny camp. We were at a YMCA camp at Camp Seymour, I believe. And it was not actually a very good camp for us as far as the facilities, that it was very rolling, kind of sprawled out campus. Very pretty. But it just didn’t work for us as far as arthritis families. So, we grew and then moved into different camps. We had gotten them to Camp Berachah, which actually happens to be the same camp that we’re going to be back at again this year. It’s changed names, it’s Camp Black Diamond. 

So, we were there for quite a few years, honestly. And as I said, our camp grew and grew and grew and grew. And so, unfortunately, we had to find a different campground at that point, because Camp Berachah had — we outgrew it. So, we were in a different camp from there. And Camp Warm Beach, which was wonderful. And we were there for many, many years. And it was great. 

COVID hit. We had so much for camp planned out in 2020, that we were able to switch it and flip it to a virtual camp, which was great. And it was nice to be able to put that on. But it just didn’t have that magic that Arthritis Camp does. And it’s so hard to describe it other than magic. 

When the kids get together, they almost forget that they have arthritis for the weekend. And that is such a gift to be able to give a child to help them forget. The parents get together, and we have a lot of classes that we go to, and we bond as well. Tell stories about our kids and deal with, “How did you deal with this medication issue? And how did you do with the shots? And when did you get this?” 

And like Leeza was explaining, yes, you’ve got some very valuable time with a very knowledgeable doctor that gives you everything that they can possibly give. And the nursing staff at Children was Grade A. I mean, the best of best nurses. So, I always felt that Taylor had the best care. I’ve never worried about her care. And we’ve always had great help and support, which was wonderful. 

But the support that you get at camp when you meet these other families, and you’re dealing with these issues together, and just have that bond. Like Leeza said, that’s my family. That’s my tribe. And Taylor’s felt that way growing up with this disease. It’s all she’s ever known. And so, being with these other families that are like her, where she can be herself and not hide things or disclose things if she doesn’t want to, she can just be herself. And that’s what camp mean so much to me. 

I’m happy that we started it in 2004. And when COVID took us out, I was fearful that it wouldn’t return. There was a rumor that it wasn’t going to happen, but some of our family moms got together and the mama bears have fought blood, sweat, and tears, pretty much, to get this camp to occur. And it is. And I’m so excited for it to return. I can’t even put into words how excited I am.

Cheryl: 

Oh, my gosh. That’s is so powerful. And it’s just, it is the one place, they don’t have to explain themselves. They don’t have to explain the fatigue, they don’t — they just, everyone’s coming from the same perspective of understanding that, you know, what the condition is and what the challenges are. And, yeah, I mean, it’s phenomenonal. 

For those who don’t know that these camps are kind of, we call them camps, and they feel like a camp to the kids in terms of the traditional camp kind of activities and there’s skits and there’s a talent show, which is amazing. But there’s also like you mentioned the education sessions. So, to me, it’s almost like a little bit of a blend of like a mini conference, like an educational conference, if doctors and social workers and counsellors and occupational therapists and physical therapists come in, and fellows, rheumatology, pediatric rheumatology fellows, come in and give these sessions. 

And the parents and kids are separated for a while, which is so important too. The parents, you’re working so hard to hold it together as a parent for your child, then you’re able to sit in a circle with other parents and finally just let it all out, right? I’m sorry, you’re the ones that have gone — I’ve gone through this as a volunteer, but you’re going as a parent and a volunteer. So anyway, Leeza, what would you add to that?

Leeza: 

So, yes, to all. It really, it’s a perfect way to describe it is a hybrid between a conference and a camp. Because the education tracks are so amazing. They cover everything from emotional health, which is such a big important piece, to school issues, to current research, to Talk With a Doc, do you have any questions? And really, like the science for the kids of, you know, what’s going on in their bodies or in their siblings’ body? And why it is the way it is. 

So, these sessions are so amazing for both parents and kids. I can’t even describe it except that, I can say that, as parents, we always need a lot of tissues in the room. Because as you’re bonding, you’re also just feeling so many emotions. There’s huge relief, you know, “Oh, my gosh, you actually understand what I’m talking about. You actually know what I’ve been going through,” to, “Well, yeah, we have to deal with this, you know.” So, it’s just, it’s really the most amazing weekend.

We always tell everyone, it’s our favorite weekend of the year, as a family. We just love that weekend, because it’s so good for all of us. Kyle can run off with his friends just like, you know, even if he hasn’t seen them since the last Catfish Camp, they just take off right where they left off. And it’s like, “Okay, bye. See ya,” and they’re off. So, it’s just such a great, kind of like a family reunion every year. 

But yeah, I would just say like, my first few times was just so eye opening and all the different aspects of the disease and what possibly can come with it, and what we’ve been dealing with. And we didn’t even realize, you know, like I said, the fatigue. And just, I got so much advice on different avenues to search. Like, with school, I didn’t know what a 504 plan was, you know, and that’s been a huge part of it. Yeah, so.

Cheryl: 

I mean, yeah, it’s really like this blend of like, it’s like arthritis school, like you’re learning all this stuff. And then it’s like, I got these intensive support groups, you know, where you’re sharing your emotions, and then you’re learning these practical tips alongside that, and then just having experiences with your family, because the whole family is invited, even the siblings that may not have a health condition. And it can help them to see, “Oh, it’s not just my sister and my brother, all these other kids are also, you know, experiencing this as well.” And yeah, it’s, it’s really amazing. 

Oh, shoot, I’ve realized just lost my train of thought. But I was, oh, I was, — nope, that I lost it. Oh, I was gonna say, and I remember because I’ve spoken on the parent track a few times. And I think what can be really delicate is, you know, social comparison is something that happens within all human groups, right? So, like the kids or the teenagers, especially, it’s like, everyone’s comparing themselves, like, you know, who’s prettier than me or who’s, and that’s normal human stuff, right? 

But it happens in health disability communities or health condition communities, that happens as well, too. Sometimes you’re like, “Wow,” you realize, “Wait a minute, we’re kind of, we have it worse than most people,” when you talk to others or you realize, “Oh, we have it better than most people.” I’ve seen that in like the Rheum to THRIVE support groups that I facilitate. Sometimes people are like, “Okay, I’m kind of recalibrating my idea of how bad my suffering is.” 

Does that make sense? Has that been kind of, um, has it — it can just be overwhelming. It goes, like you mentioned, so many emotions at once, right? And like realizing I’m grateful that it’s not worse because I’m seeing this other family where they’re in a worse situation than ours. And then you’re also, but then you’re like, but ours is still difficult. And that’s okay to feel that that’s difficult. And so, it’s a lot. Did you want to say something more, Leeza, about that?

Leeza: 

Oh, yeah, I can start with that. I just, before I forget, because I’m really forgetful too. And I think the last note, I forgot my train of thought, and I had more to say, but who knows where it went. So, but yeah, like, I think that was a big one for Kyle, you know, realizing like, oh, there are other people dealing with stuff like me. Because he had — oh, that’s what it was. I just reminded myself. He had huge social anxiety. Enormous. Wants to be a wallflower in class, doesn’t want to be noticed or talked to. 

And even in the group, he was in that troop. It was just, you would get upset when it was picture time, like to the point where he’d throw a fit. And it was really difficult to figure out what was going on. And we’re like, oh, okay, we started realizing I think it’s that feeling of different, or other, or not as physically capable, you know. And so, I think that played a lot into his emotions as a child. 

But going back to the positives of Catfish Camp one year — and I know you’ll probably both remember this — Jack and I were just over the moon. So excited. One of our lovely older teens, Casey, came up and was just looking around at dinner time before the talent show, saying, “Hey, does anybody want to be in my magic show with me?” Yeah, yeah. See, you’re remembering. And Casey came over to our family and asked, and Kyle’s like, “Yeah, sure. Okay.” And Jack and I looked at each other, like, “What? You do you realize that’s on stage right? In front of the whole crowd, right?” And he’s like, “Yeah, I’m good. I’ll do it.” And we were just like, so nervous. And then they call Casey and they both go up there. And Kyle, just like — I love you, Casey. But he kind of stole the show. It’s been such a little him. He was what, like seven or eight years old at the time, I think he was eight, maybe, at that point. And we just cried seeing how comfortable he felt. And how amazing a feeling that was to see our child with severe anxiety go up on the stage, because he felt comfortable. Because this was our KATFISH  family. And it was just incredible. 

Cheryl:

That’s amazing.

Leeza:

To your current point, I have no idea where I was going with.

Cheryl: 

Oh, no, that’s okay. You’re in good company here. Yeah. And Courtney, what would you add to that? Or do you want to share any other memories from camp?

Courtney:  

Yeah. Oh, so many memories. Like, I do have a funny memory that I’ll talk about in just a second. But I did want to say, the nice thing about being as a family camp is, like you were saying, Cheryl, that some of the siblings get to kind of realize, “Oh, my brother’s not faking it, you know, he really is having some troubles,” or, “Oh, that’s why my sister can’t empty the dishwasher and it has to be my turn all the time.” And so, the siblings kind of feel a little more empathy towards their sibling when they realize, oh, they’re not faking it, that you feel that too. And you feel that way. And you feel that way. And so, it just kind of opens the siblings eyes a little bit. 

And arthritis is definitely, I truly feel, and we’ve all kind of mentioned it, a family journey. Yes, it happens to the child. But the whole family feels it and we try and we want to try and fix it, like you were saying with Jack, Mike and I feel the same way. You know, how can I make Taylor feel better? What can I do to help her? I can’t take this away from her, unfortunately. But what can I do to make her feel better? And so, it’s just nice to be able to go to the camps to feel that way. 

My funny story is, so Taylor and one of the other families that are in the original camps that we went to, they had — and this is Joanna’s idea — she brought the sticks that you break and the neon sticks that glow in the dark ones? And so, Joanna had bought a bunch of those just for the kids, like, you know, it would be a lot of fun. Well, Cody and Taylor decided to bite into them. And we were trying to figure out what is the chemical component of this glowstick? Is it going to cause them harm? Do we need to call poison control? [Laughs]

Cheryl: 

That might be a new one to put in the textbooks. Does glowstick material interact with juvenile idiopathic arthritis medications? Yeah.

Courtney:  

Well, we were in bunk beds. And I was on the bottom bunk and Taylor was on the top bunk. And so, Taylor wanted to say something to me, so she leant over the bed. And this Cheshire Cat was started talking to me with a glow stick. So, that’s my famous glowstick story from camp.

Cheryl: 

Oh, my gosh, this is actually great. I would love to hear any other of your favorite memories from camp. Like, either it can be like those, you know, we definitely have many tissues that are around parent conversations. And I can share one just quick. I know, I’m giving, obviously this is for you to share your stories. But when I, the first year I volunteered at camp, I really didn’t know what to expect. And I had been in medicated remission for seven years. And I didn’t realize that that wasn’t the norm. You know, like, I thought that everyone, oh, well, they came up with the biologics in 2003. So, everyone’s doing well. Like, I was very simplistic, but I hadn’t gone to occupational therapy school, I didn’t know. 

So, I was like, oh, they’re like, “We saw your swing dancing video,” and I had a video called Dancing with Arthritis on YouTube. And they were like, you seem like somebody who would like to talk about this and like, has no shame. And I’m like, “Yes, I am. Perfect.” 

So, I came and talked at camp and I had this whole speech to tell the parents about, you know, what it was like being diagnosed and going through my 20s. You know, it wasn’t the same. It’s not the same as being a child with it, right? I grew –  I had, I was very, quote-unquote, you know, ‘able bodied’. I was captain of my college soccer team, and that was a different experience going from inhabiting that body to suddenly feeling the body breaking down. 

But anyway, the point of this is that I shared that and, and, and then, you know, afterwards, I thought I made all these great points. And a couple of the parents come up to me, and they’re like, “It’s just great to see that you’re just out there, like swing dancing and having fun.” And like, at that point, at that time, I thought, really, like, wow, I can’t believe that of all the things I just said that I was trying to be so smart and so wise, that that’s what — they’re like, “You’re just living. You’re living a life, like a full life.” 

And now, I realized what they meant by that, right? Like, that’s what your dream is for your child, is to grow up and be able to just, if they want to swing dance, swing dance; if they want to play the flute, play the flute. Like, not to be burdened, or, you know, your world becomes smaller and less, and your abilities due to your health condition, but at the time, it was just, it was it was like, oh, my gosh, I didn’t realize that these things I’m even taking for granted, even despite my health condition, that they’re impacting. 

They’re having a positive effect on people and giving them, you know, some hope that, you know, if the medications can work for them, maybe they can, you know, jump around and dance around too. 

But anyway, that was, and another favorite memory is just S’mores, because I have – I love sugar. I know sugar is inflammatory to all the dietitians listening. I eat sugar, because it makes me happy. So, the S’mores and the singing, the songs. But what about you, Leeza, any other just memories that stand out?

Leeza: 

Oh, my gosh. I mean, yeah, I mean, I love the talent shows and the s’mores and the songs. It’s, I think, just the people, you know, and the bonding experiences, the time with parents, time dancing with you in the audience, and s’mores. Like, there’s just too many, you know, it’s all good. It’s all important. 

I love the parent sessions the most. But then, Saturday night with the talent show and the art corner, which is incredible, that’s part of it. So, we have like the stage talent show. But we also have an art corner for everyone to display, which there’s so much amazing art every year. And Courtney is kind of the one that implemented that, and I just love it so much. But yeah, I don’t know. 

I kind of like one of our volunteers that can just call out across, “Ay, burrito!” [Laughs] If anyone knows it, we have certain camp songs we’ve been doing for so long that the kids just respond to it. And his name is David — hey, David! — but all the kids know him as The Burrito Guy, so it’s just like, you build like a rapport with everyone and it’s just, you know, it just becomes fond memories or years to come.

Cheryl: 

Absolutely. Those who, again, if your children, if a lot of the children with juvenile idiopathic arthritis would try to access that experience of a camp, you know, that camp excitement – like my son who doesn’t have any health conditions I know of, you know, we went to Boy Scout camp and family camp.  And it was so fun that we did all these things, but there wasn’t a lot of considerations, right  the kids with juvenile idiopathic arthritis would probably have to make, you know, not be able to participate in everything. 

But in this camp, the KATFISH Camp through the Arthritis Foundation, everything is designed for, you know, to be accessible. And anyway, so yeah, it’s incredible. W

hat about you, Courtney, any other highlights? I mean, they’re just, you have so — you must have this Rolodex of memories back from 2004. That’s almost like 20 years ago?

Courtney:  

Oh, gosh, yes. One year, we have a theme, usually, to our camps too. And one year we had a pirate theme. And one of the young men now who’s now married, Patrick Bliese, he was a little boy and his arthritis was so bad. It affected the lining around the heart, his heart. And he was told, his mom was told that they didn’t know how long his life would be. And so, they were trying to tell her quality of life, not quantity. 

And so, for his fifth birthday party they had, he was really into pirates. And so, they had the biggest pirate party ever. They got involved in the pirates that come to Seafair. And so, they happened to have a big connection. And they had those Seafair pirates come to our arthritis camp. 

And we were all in the middle of this at Camp Berachah at the time, and we were all kind of in this central area. And the pirates busted in and took over and stole Joanna and kidnapped her. That was quite an exciting camp. Kind of scared some of the littles because, you know, the noise and the ruckus and these big, scary pirate men, you know. But it was a lot of fun. And the kids had a great time once they realized the pirates were okay.

Cheryl: 

Oh, my gosh. I love that. Okay. And the other thing I was gonna say is –  They organized this activity, right, where everyone wrote down on these wooden — can you explain what are those blocks?

Leeza: 

Yeah. So, they do it pretty much every year now. Yeah, so you may have been at the first one, but they continued doing it. So, they all do taekwondo. And so, what they do is they use the breaking boards for taekwondo. And everybody was able to write down something that they do not love about arthritis. And so, we’d all write it down throughout, you know, Friday evening, Saturday during the day, on these boards. Then Saturday night, for the talent show, the family would do an amazing taekwondo presentation, and they break all the boards. 

And so, it was such a powerful thing. And they would have it — they took pictures of all of them. So, all of everything that we all wrote down would be up on the screen. They did like a lovely slideshow of every everything written down, and we’d see them being broken. And then we take those and take them to the fireplace or the campfire, and we throw them in the fire and it was just kind of like an, ah, you know, we all just kind of sighed, like, if only, you know? But it was such a beautiful moment. Such a beautiful moment. Yeah.

Cheryl: 

That’s so good. And I actually, so in 2015, I volunteered at the camp when Charlie, it was either 2015 or 2016, he was either barely one, not one-year-old yet, or one-year-old. I can’t remember. I have very serious brain fog. But I took a picture so I could look at this picture and see when it was taken. But anyway, of the wooden board that I had drawn on, and it just said, it says a little drawing of me holding Charlie and says, “Ouch! Hurts to pick up my baby.” 

And I just — it was so simple, right, but it was like, I was just in tears watching that, you know, even as an adult again, you know, with adult rheumatoid arthritis, I was having a postpartum flare up that kind of took a long time. And not kind of, it took a long time to get back on track with my disease, getting my disease back under control. And that was so painful, but it was like, you know, I just felt so grateful to be able to be a part of that. It was so cathartic watching that. 

And these little kids, and they were — how many kids in their family have arthritis? Like, four, or — no, some of the families, they have multiple kids with arthritis, and so, to see these little kids breaking these boards, it was just so incredible. Sorry. 

But I just, you know, we’re gonna put for those listening who might be interested in these juvenile arthritis camps, family camps, we’ll put a link in the show notes to the master list on the Arthritis Foundation, because I know we have listeners from all over the country. And then, also a specific link to the one that’s going to be in the Seattle area. It’s about an hour south and before 10 minutes south, right in Auburn. But, so definitely check those out. 

And there’s, for those who might get confused, there’s also the JA Conference, which is a larger gathering from people across the country versus the more local camps. And so, but they’re both great. I’ve only been to the keystone one of the JA, the 100 Year Celebration, or 50 Year Celebration one, but that was really great. 

And so, one question I always like to give people towards the end of the interview is what advice do you have for people newly diagnosed. So, in your case, I guess it would be parents of children newly diagnosed with juvenile idiopathic arthritis. I know it’s so hard to put it into like, a soundbite. But what are some of the words of wisdom you’d want to share? Who wants to go first? Courtney, go ahead.

Courtney:  

Sure. Again, going back to when Taylor was diagnosed, it was very scary, very dark. I really think I went into a clinical depression, honestly. And I just, I couldn’t find any support. I couldn’t find, like Lisa said, somebody to understand what we were going through. And then, my family felt for us, of course, but they just didn’t understand. And often, my brother will tell me, my eldest brother, Chris, he says, I sometimes forget that Taylor has arthritis, because all the stuff that she does, and she’s so active in school, and does well in school, and she even played lacrosse. Sophomore, junior, and senior year of high school. And this was after she had a LeFort surgery, which is a very comprehensive jaw surgery. Basically, breaking her jaw in different places, putting it back together again with titanium plates and screws, is what happened in August 4th of 2014. 

In spring, that next year, Taylor said, “Mom, I’d like to play lacrosse.” And I said, okay, we’ve never played it before. What’s involved? What’s the safety here, things like that. She told me, “Well, shin splints.” Okay. Make sense. “Mouthguard.” Oh, definite. And then she said, and that really was it as far as equipment. I can’t remember if there was anything else. And I said, “But what about helmet?” And she says, “Oh, no, no, no, only the goalies wear helmets.” And I’m like, “I would like to think so.” Yes. And I said, “Now, wait a minute. Isn’t this a sport where they run up and down the field curling a hard ball with sticks?” And she says, “Yeah, Mom, that’s it. That’s it.” And I said, “No, we’re not doing that.” And so, then she said, “Mom, I really want to play this game. You know, some of my friends are playing. I really want to get into this.”

And I honestly forgot that years and years and years ago, when she was diagnosed, I made a promise to myself that I was going to let her do whatever she wanted to do, whenever she wanted to do as far as activities, because I didn’t want to limit her. I didn’t want to stifle creativity. I didn’t want to stifle her childhood. I wanted her give her as much opportunity as she could, that her body would allow. Because I didn’t know if there was going to be a time that her body would not allow it to happen. And so, when she was telling me she wanted to be at this lacrosse sport, I’m thinking, “Are you crazy?” And so, I thought, okay, compromise. If Dr. Egbert, her surgeon, felt that she could play this sport, then I would abide and we would let her play. So, she went up to Children’s Hospital, Mike, my husband, and her went up. And they had a regular routine visit with Dr. Egbert and he asked the same questions, “What are the safety equipments?” And so, Taylor told him, and he said, “What about a helmet?” And she says, “No, it’s illegal for women’s lacrosse team to wear helmets; for boys, they do.” 

And it’s almost a totally different sport, I feel, from boy’s lacrosse, men’s lacrosse, from women’s lacrosse. They have different rules. They have different different equipment. As far as sticks, even, the men’s sticks are longer. It’s just really interesting. Anyways, Dr. Egbert was saying, “Helmet? No helmet? I don’t think that’s right. I think you really should play with a helmet.” And so, she talked more and more to her doctor. And again, I’m glad he listened. But I was shocked as heck when he said, “Okay, I’ll let you do that.” And Taylor was coming home, they were driving home, she called on the phone and said, “Mom, guess what? Dr. Egbert agreed.” And I thought, “Was he high?” Why did he ever agree to play, let her play this day, because now I’m gonna have to let her play. And so, she signed up. She played again, sophomore year on JV team. Junior year, she made the swing team, which meant she played JV and varsity sport games, and made it up to varsity and lettered in the sport at letterman. And also had a very high GPA, which we’re very proud of, all while dealing with flares, and major surgeries, and medications and whatnot. 

So, lesson learned. Definitely let your kiddos try what they can. Get support. Like Lisa was saying, mental health is so, so important. If your mental health is not right, your physical health is going to suffer; vice versa. So, that’s my biggest piece, is get involved, get mental health for you, your family, find your tribe to grow with, to flourish with. And that’s about my best advice.

Cheryl: 

That’s wonderful. I always say, with respect to therapy and mental health, I wish I had gone to therapy earlier. I didn’t go until I was postpartum. And, you know, I think it was because there’s such a — there’s so many efforts about postpartum depression and, you know, normalizing going to therapy after that. I didn’t think rheumatoid arthritis was bad enough of a reason to need therapy, you know, “Oh, I’m — it’s not that bad. It’s not that bad.” I was like gaslighting myself, you know. So, yes, absolutely. Mental health. And I love that story about letting her set her limits, I guess. I mean, I think as a mom, I’m terrible at that. So, I’m listening to you being like, okay, I have to be more like that. Because my son wants to play football. And I’m just like, no… But anyway, sorry. But they do at least wear helmets. But oh, that’s so wonderful. I know, she’s, I mean, I know it’s cliche to say, but like these kids and my fellow people with rheumatoid, adult rheumatoid arthritis, are like the strongest people I know. I mean, really. It’s just incredible what people can do. We kinda all have a stubborn streak, I have to say. [Laughs]

Leeza: 

I think it’s earned.

Cheryl: 

Yeah. Yeah. Like, stubbornness can get you a lot of good places in life. It can get you some bad places, too. So, yeah, what would you say, Leeza?

Leeza: 

I would say, first of all, listen to your doctors. Listen to your kid’s doctor. If you need to get second, third, fourth opinion, that’s great. Don’t let, you know, people on the internet or as we were saying earlier, even family railroad you and gaslight you. You’re hearing from the experts in the field, you know. And whether you disagree, that’s okay. But I would say trust in the medical professionals, because really, they’re the ones who are going through it. There’s so much ongoing research and new medicine. Yes, medicine changes over time. And just from when Kyle was first diagnosed, they were saying, “Oh, no, he shouldn’t be like riding a bike or doing tap or anything like that,” you know, and then we get to a newer rheumatologist and they’re like, “Oh, no, he totally should be exercising.” And so, things are going to change and the ones in the field are the ones who are keeping up. So, I’d say definitely seek as many professional opinions as you feel that you need to and don’t let other people talk you out or make you feel guilty for following doctor’s orders. You know, you’re in the know, you’re the one going through it. You’re the one, your family is going through it. Trust yourself, don’t guilt yourself. 

Also, as you were talking about gaslighting, I always try to remind myself like when I’m talking about it, you know, whether I’m venting on Facebook or to friends or, you know, whatever it may be, yeah, there are more deadly, more serious diseases out there. Absolutely true. But this is still a difficult journey. And let yourself have that grief and have that, you know, emotion. It’s okay to complain. It’s okay to be upset. Don’t let people tell you, “Oh, well, it’s just arthritis,” you know, that’s not it. It affects our whole lives. It has, since he was little, he doesn’t know a life without arthritis. It’s made him very strong. It’s made him a self-advocate. He comes with us to the advocacy meetings, which I would like to touch on a little more. But, you know, you have to let yourself feel those feelings and not feel guilty. 

And I would say also sign up with the Arthritis Foundation, because that’s how I met my tribe, as Courtney said. And, you know, all these events are so empowering. Arthritis Walk, you know, here we are, we’re all walking together. All generations walking together for research funding, you know. The camps. I mean, I can’t describe. Courtney said magic, I think that’s the best word to use. They’re magical; most magical weekend, you know. And so, I would say, get in touch with the Arthritis Foundation, become a member immediately. And, you know, they show you the research, too. There’re so many things on the website that you can look into so you don’t feel alone, and you don’t feel confused, and, you know, like, you don’t know anything. But really, yeah, I would say trust yourself, trust in the professionals, and find your tribe. Definitely.

Cheryl: 

I love that. I love that. And yeah, can you tell us a little more about what it means to be an Ambassador through the Arthritis Foundation?

Leeza: 

Yeah, I’ll go ahead. Courtney has been doing it longer than me. She’s amazing. All the people who have come before me are my inspiration. For me, it did start at camp. It started with Joanna Lindsey, as I said. And there was one camp — see, I had a fear of public speaking. I really did. I was a dancer off and on for 20 years, no problems dancing on stage. There I am, expressing myself. You give me a microphone, put me in front of people, I’m like, er… [Laughs] So actually, volunteerism actually helped me come out of my shell, so I truly appreciate it. But Joanna said the most interesting thing, because I was terrified. I’m like advocacy, ooh, talking to people? I don’t know about that. Legislators? Oh, that’s scary, you know, important people with business suits. And, you know, in Washington, DC and Olympia here in Washington; oh, my gosh, that’s just really too scary. And she said, “Remember, you’re their boss. They work for you.” And that completely clicked in my head. 

And now, as I talk to other potential advocates, which hopefully some of you will join. That’s what I say. Because really, yes, we elected them to do work for us, they’re supposed to be working for us. They get to hear our stories. The best way that they know how to govern and how to legislate and pass things through, is to hear the stories of real-life impacts on people, their constituents. They want to know what’s important to you, and what needs to be done, how they can help. That’s really the basis of what it is, you know. What do you need? And when we go into these advocacy meetings, basically you would, with the Arthritis Foundation, they’ll help you set up a meeting, depending on how involved you are. But really, what it is, is you go and you tell your story. And that’s it. You know, the stories of how we were diagnosed and what it’s affected and how it affected school and family. That’s all you need to do. It’s really just telling your story. 

And a lot of people get into believing, “Oh, I don’t know what’s this bill number. I don’t know, you know how to describe it, and what we’re asking for,” it’s like, you know what? Leave that to the ones who have done it before, if that’s what you want. Leave it to the Arthritis Foundation member that will be in the meeting with you. You can always have a member from the Arthritis Foundation with you. If you’re one of the only constituents that can show up, they will help you. And really, you’re just there to put a face to numbers because these legislators and their legislative assistants, who really pretty much run the show, to be honest — don’t ever be upset if you get to talk to a legislative assistant instead of the actual legislator, because the assistants are the ones who really work on the bills, they show the government — or the cash — and the — well. 

Cheryl:

The representatives.

Leeza:

The legislators — representatives. Thank you. I’m like, what is that word I’m looking for. They show them what’s important, you know, and they, if you are so impassioned and go to the office, and you make the effort to talk about your child, or even yourself, and say, “Look, this is really affecting us, this is what we need,” they’re gonna remember that. They’re gonna remember that face and that story, and they’re going to bring it to the legislator. And that’s how we move bills. And that’s how we get things done. We’ve actually been successful in the last few years. We got a really big bill we’ve been working on for quite a while through, and it’s just incredible. It’s taking some power back. You know, it’s restoring some sense of strength and courage that arthritis robbed from you. So, I just, I can’t believe that me of all people who used to be completely shy and huge anxiety would ever want to do something like this, but I love it. It makes me feel so much better that I can do this for Kyle and all the other people suffering across the country.

Cheryl: 

Yeah, absolutely. And, you know, there are other programs as well, so, and they’re all a little bit similar in the sense that they help you to identify what are these bullet points you need to talk to your representative about, you know. Like, when we did the one in Olympia, the same year that the anti-vax people were there in person the same day, that was fun, 2019. 

Leeza:

Yeah, that was.

Cheryl:

But yeah, they give us the bullet points of okay, we’re going to advocate against, you know, unfair step therapy that’s making people fail first and this is why, at state level, this is why we want you to pass X-Y-Z. Like, you don’t have to do the research on your own, they give it to you, like Leeza said. And then there’s also one through — and I’m going to put all these links in here — but through the American College of Rheumatology, which mostly serves rheumatologist doctors, and that they bring together also the patients, if they’re advocates for arthritis events in Washington, DC, advocating at like, the federal level — and also Arthritis Foundation does bring people in the federal level. So, there’s opportunities everywhere. And, you know, I’m similar to Leeza in that I’ve never been shy to talk on stage, I always like to talk, but I was very intimidated by the legislative process. And I was like, I don’t want to talk to these scary politicians. Like, are they going to be like, “Go away a little girl,” like even though I was like 30, you know? And it was like, like you said, Joanna, Joanna Lindsey, we’re gonna give her a little metal after this episode. But she said, yeah, they work for you. They represent you. They’re representatives. So, that helped me a lot, too. Sorry, Courtney, would you add anything to all of that?

Courtney:  

Oh, most definitely. Thank you. Back in, again, to 2005, 2006, I believe, is we had the opportunity to go to Washington, DC. Joanna heard our story. She said, “You gotta go, you gotta go,” so she helped us get a scholarship. We ended up going to Washington, DC, Taylor and I, and my husband ended up joining me because his boss said, this is so important. Your wife and your daughter are doing this. We’re going to get you on a plane, and you’re gonna go, and you’re gonna be with them. So, the three of us were able to go and meet at that time, Patty Murray, and Norm Dicks was representative, and I forgot who our other person was at that time. But we went and we were able to tell Taylor’s story. She met Patty Murray. And it was so cute. I have a picture framed on our wall of her and Patty meeting. And Taylor was giving her a, like a pretend dollar bill, because it was talking about the funding that the Arthritis Foundation was trying to raise to help with education with research and development, and things like that. And so, Patty had her arm around Taylor in a motherly and grandmotherly way, and it’s the best picture. And Patty even autographed it for Taylor. And so, I framed that to show Taylor that you could be anything you want to be and when you grow up, and it just, I just wanted to show her that power that she could have. 

So, the advocacy has been really, really good. I also wanted to share that there is Junior Ambassadors. So, there are a way for the kids to maybe help find their voice and share their story. Taylor has told her story so many times, and [1:15:23 name] at advocacy, locally in Olympia, and in DC; we’ve been to DC a few times sharing her story. And I think it’s really helped her grow as a person. Like Leeza, myself, I’m actually a very shy introvert person. And so, for me to talk in front of, like you were saying, powerful people, I get stressed/starstruck when I meet some of these representatives and senators, and I’m walking in the halls of where John F. Kennedy walked, and walking on the ground where Martin Luther King gave his speech. And it just, the history there is just phenomenal, and it’s very emotional, of being able to share your story and just tell them, you know, what happened and what your child is going through and what your family is going through. 

And you mentioned earlier, Cheryl, about there’s only 350 pediatric rheumatologists for 350,000 kids that have some form of arthritis. Children’s Hospital has 7 of those providers, fellows, doctors, that are able to see children at Seattle children. They, of course, see Washington patients, but they also see Alaska because there are zero, zero, pediatric rheumatologists in Alaska. They either fly up to see patients or the patients fly down to Seattle Children’s. Montana has none. Parts of Idaho have none. Oregon, I think it only has a few. So, a lot of states travel to go to Seattle Children’s Hospital to see our very overwhelmed, busy, hardworking 7 providers and give them the care that they can give. So, one of the, that we have been fighting for and trying to help the doctors is a loan forgiveness. So, the Arthritis Foundation was asking for pediatric rheumatologist, if you signed up to be a rheumatologist, and if you said, “Yes, I will go in these areas that have no pediatric rheumatologist,” their loans would be forgiven, which is amazing. And when you think about the years and years and years of college tuition debt these providers have accrued and have it all washed away if they could go to an area that is sorely needed, that was amazing. And yes, that one piece we’ve been working on since Taylor and Mike and I went in 2005, we had been — it was one of the asks that we had asked back then. And it may be slow going, but once you get that momentum, and things move, things happen. And one voice, one story can make such a difference.

Cheryl: 

That’s incredible. And you’re, you — I mean, wow. Both of you, I can tell, you’ve both been, you know, you’re both very excellent public speakers. And I’m shocked that you’ve both — I’d actually didn’t know that about you that you don’t, well, didn’t like it previously. So, I think it’s, yeah, it’s a personal growth opportunity to share your story. And it’s, again, cathartic, and it’s also empowering. Because the American healthcare system can feel very disempowering. You know, you’re at the mercy of people whose incentives aren’t always your health. The incentive is for them to make money. So, I’m talking about insurance companies, not the doctors. So, because they don’t make any more money when we’re on Drug A versus Drug B. The doctors don’t. 

But anyway, so, you know, to say, take the power back in our hands and talk to these powerful legislators, you know, and share our stories, is so powerful. There’s the word power again. But thank you. Well, we’ve gone over that time, I told you this would be, so thank you so much. I mean, I know we can all talk about this like, literally forever, but I will put a bunch of links in the show notes. And maybe yeah, maybe we’ll do a follow up later on. But is there anything else you wanted to share, or if you have any public links where people can and follow you or connect to you online, if you would like to shout those out, feel free to do that. It’s okay if — one the last one of the last people I had, she’s an ARNP nurse practitioner at Seattle Arthritis Clinic and she’s like, “I don’t have anything. I don’t have any social media.” That’s okay too. But do you have anything anywhere you would want to share, anything else?

Leeza: 

Yeah. I mean, I just, on Twitter, I just, you know, through all the advocacy that we do — and I agree with Courtney, by the way, going to Washington, DC, it was incredible and life changing. But I just kind of retweet a lot from the Advocate at Arthritis, or Arthritis Foundation — @ArthritisFDN, I believe it is. And it you know, that’s all for me. Like, that’s pretty much. I just kind of regurgitate what the Arthritis Foundation posts. But also, no, I do make my posts like after each meeting with a representative or a senator, or even local versus federal, I always thank them in a tweet, just so people know that they are actually meeting with their constituents and how much we appreciate it. I’ve had the pleasure of kind of being recognized by our legislators at this point, you know. I’ve met with DelBene and Murray and Cantwell, and in fact, I have a picture of Kyle and his friend, the one he runs around with all the time, our other JA family friend, sitting on Maria Cantwell’s lap. So, it’s so cute. It’s one of my favorite pictures. And yeah, it’s just, you know, they’re human. And it’s a great thing to do. But yeah, I’d say just follow them. Because you can actually see what they’re working on and find out how to get involved because it really is empowering.

Cheryl: 

Oh, yeah. And you can just write an e-mail, I meant to say, I’m glad I just thought of that. Because I’m on the website right now, remembering. Yeah, you could you also, you don’t have to actually meet. You could do a virtual meeting, or you can literally just send an email to your legislator. They take it more seriously when it’s from their constituents than when it’s from the, you know, anyone else. So, thank you. Thank you so much, Leeza, for taking the time. I know, again, both of you are very busy and I just, I appreciate it so, so much. And Courtney, is there anything else you would want to say before we sadly have to wrap this up?

Courtney:  

Oh, I’m just so appreciative of you Cheryl, and allowing us to come on and talk to you tonight and share our stories and talk about our camp. It just helps us to do more advocacy, just share the word, get the word out. Like I said, when Taylor was first diagnosed, it was such a scary time. And if I can help one family avoid that or help get through it, I would really like to try and do that. So, that’s all.

Cheryl: 

I’m just — I’m really, I’m in awe of both of you. As somebody who knows a little bit of the behind the scenes, it really truly is your blood, sweat, and tears that are making this camp happen this year. So, I really, really am, yeah, just again, in awe of all the passion and all the work you’ve put in over many, many years, you know, year after year, when you could have just said, “Oh, well, you know, my daughters in college now. So, you know, I’m not going to be involved in more.” Nope, you’re still involved, you know, so it’s awesome. I mean, it really is inspiring to me. So, thank you all. This is really, I really liked the walk down memory lane. We didn’t even plan that but I was like, this is great. Let’s just share our favorite memories of camp. Like, there’s so many more. We could do a whole episode of just favorite camp memories.

Leeza: 

Oh, my gosh, so many. And I would just say, you know, we’re always looking for more volunteers 18 and over in the area, and still plenty of openings for families, you know, if you’re in the Washington, Oregon, Alaska kind of area. Alaska already had a camp but hey, come on down to Washington. We’d love to have you at our Catfish Camp and become part of our family.

Cheryl: 

This is not an officially Arthritis Foundation sanctioned mug, but my friend made this. It says ‘I’d rather be at arthritis camp’.

Courtney:

I love that. 

Cheryl:

My adaptive arthritis friendly scissors are in my arthritis mug.

Leeza: 

In fact, I have to plug Miss Cheryl, because I was watching her podcast and I was learning from her and I bought two pairs of those. And so, I use them for me because I have tendonitis with tennis elbow, and it’s really difficult. And I do a lot of crafting. And my son, I got him the same scissors and he just absolutely loves them.

Cheryl: 

Oh, that’s wonderful.

Leeza: 

Thank you, Cheryl, we appreciate you too.

Cheryl: 

Oh, it’s, just again, it’s so, I didn’t even know — I’ve said this a million times that I didn’t know when I went to occupational therapy school how much I would learn about arthritis. I went to occupational therapy school for other motivations. And it’s been, that’s been one of my passions, is sharing all these great, you know, life hacks and tips and tricks and mental health tips as well. Because yeah, these are all just things that help us improve our quality of life. But I can’t believe I’m going to be seeing you in person not too long. Oh, I can’t wait for the camp; it’s going to be incredible. Lots of COVID precautions will be taken by the way, just FYI. We’re all very, very cautious about that. But, you know, it’s mostly outdoors and it’s just, it’s going to be incredible. So, I’m excited. Thank you both again. I’m at the point of the of the phone conversation where like, I love you more. No, I love you more. Okay, I miss you too.

Leeza: 

I always feel like that feels weird just hanging up. But yeah.

Cheryl: 

I have this is episode, I think, 74, it’s Episode 74. I still, yeah, I have no improvement, no improvement in my ability to end it. That’s okay. I have self-compassion for myself. Maybe too much, but maybe just enough, so. I’ll just say bye-bye. Thank you.

Leeza: 

Bye. We’ll see you.