Let's Catch Up Chelsey!

Ever wondered how someone navigates the unique challenges of a thriving career in musical theater while dealing with the daily hurdles of a chronic illness? Chelsey, our inspiring guest, shares her remarkable journey from Vancouver to the American Musical and Dramatic Academy and how she's now making a difference as the Associate Director of Musical Theater at the 92nd Street Y in New York City. Diagnosed with rheumatoid arthritis in 2020, Chelsey didn't let her condition define her; instead, she transformed her journey into a support system for others through her "Immune System Hates Me" podcast and the Rheumatoid Arthritis Warriors support group. Tune in to hear how Chelsey champions the importance of community and support for those living with chronic illnesses.

Through candid reflections, Chelsey discusses overcoming self-imposed barriers and avoiding the catastrophic mindset that often accompanies chronic illness. She emphasizes the support she receives from her colleagues and the nurturing environment that allows her to thrive in both teaching and performing. Learn how Chelsey's passion for musical theater extends beyond the stage as she helps young performers build confidence and find their voice in a creative space that welcomes all. From guiding shy kids to become confident performers to creating a sense of belonging, Chelsey's story is a beautiful testament to the power of the arts in personal development.

Navigating a career in the performing arts while managing a chronic illness is no small feat, but Chelsey shares invaluable insights and practical advice on how to make it work. Listen as she talks about adapting dance routines, understanding personal limitations, and having backup plans like further education. Get a glimpse into her personal life, including her experiences with new medications and maintaining relationships. With heartwarming anecdotes and genuine moments, Chelsey's episode is a heartfelt reminder that authenticity and relatability are key to building a supportive community. Join us for an episode filled with humor, shared experiences, and the special bond with our "spoonies sisters.

Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. 

Chapters

• 0:00 Chronic Illness Advocacy Through Musical Theater
• 13:36 Personal Reflections on Musical Theater
• 16:57 Empowering Youth Through Musical Theater"
• 26:37 Navigating Chronic Illness Treatment and Goals
• 37:30 Staying Connected Through Shared Experiences

Transcript

Jen: 0:08

On today's episode of my Spoonie Sisters. We are thrilled to welcome Chelse, a multi-talented performer and advocate for the chronic illness community. Based in the vibrant heart of New York City, chelsea is an accomplished singer, dancer, and actress with roots in Vancouver, bc. A graduate of the American Musical and Dramatic Academy I almost butchered that one, you guys. Chelsea has graced numerous stages with her incredible talent. Currently, she serves as the Associate Director of Musical Theater. Her Theater. aches and Y, where she stars in original TYA shows. Chelsea's journey is one of resilience and creativities and as she navigates life with rheumatoid arthritis and well, many of you may recognize her as the former host of the Immune System Hates Me podcast, we're excited to dive into her experience both on and off the stage. And wow, that was a mouthful. You have no idea how much self control I had to have to not laugh and to not just skip all of that and say hi.

Chelsey: 1:13

So professional. I'm really proud of you. Good job.

Jen: 1:16

Oh my gosh. Well, you know, you created me. Look at the monster I've made. Oh my gosh. Okay, so we go like oh my gosh, but we go way back. So, for people that are familiar with you, I came across you one day because you had this amazing podcast. Do you mind telling people about that?

Chelsey: 1:34

Yeah, so I had a podcast called my Immune System Hates Me where I interviewed people with all different types of chronic illnesses, got to know kind of what those illnesses, how they looked on those people and what they felt like, and so I guess you found that podcast.

Jen: 1:52

I did, and I found you on Instagram and started just bugging you all the time with my crazy shenanigans. Oh, so lucky you put up with me. You're a good time, jenny, well, and you had a support group that you ran for quite a lengthy amount of time too.

Chelsey: 2:08

Yeah, I think we went almost two years with the Rheumatoid Arthritis Warrior Group. That was a fun time we were the best group of people.

Jen: 2:16

I loved it. I loved it not to bash on the group I help with now, but I miss you, I mean it's just not the same, I miss you too. Okay, so for all the new people out there, can you tell us a little more about you and why you started your advocacy work?

Chelsey: 2:36

Sure. So I mean, you covered so much of my history I don't even know what else to add. But I was diagnosed with rheumatoid arthritis in 2020. And I decided that I couldn't find enough resources to know what life was like with an autoimmune disease, specifically RA, and so I started a podcast to kind of help other people who are in my position. I didn't have any information.

Chelsey: 3:02

I had like one month experience with the disease, but I was like I'm going to start a podcast and maybe I'll find other people and maybe even just this one month of experience can help other people who are looking for someone to relate to. I started the podcast. I spoke to so many people I don't even know how many episodes I had, but I went for two years doing this podcast. The more people I spoke to, the more I realized that there's a community out there of people that just need to connect to other people like them. So that's when I started the Rheumatoid Arthritis Warriors group, because I wanted to bring people together so we could talk face to face. I was getting lots of that communication through the podcast, but I know that all the listeners out there they wanted to also be able to ask questions firsthand with someone.

Jen: 3:48

So that's when I started that group and, yeah, it's kind of been that's my history, yes, and when you decided to move on to other things in life, I could not let that go, and so, no, I've kept up in your honor, but in a different way, and I'm just so excited that you would come back and chat with us, of course.

Chelsey: 4:09

No, I'm so excited that you were able to keep the community building and you've grown it so much bigger than I could have ever done. I love that you've been able to take that and really run with it. It's nice to like watch from afar, but now I'm really excited to be back in and say hi real quick.

Jen: 4:25

Oh my gosh. Well, you're so sweet and I've just missed you to pieces. What inspired you to pursue a career in musical theater and how did your journey lead you to New York City?

Chelsey: 4:37

wow, okay, growing up I was like really young, I was quite shy. So in order to kind of get me to come, out of my shell.

Chelsey: 4:44

I know, can you believe it me? But in order to get me to come out of my shell, my mom put me in dance classes and and I was hooked immediately. So I started dancing when I was like three years old and then that led to watching like movie musicals. So I'd watch like West Side Story and Cats and I started to like learn all the choreography from those and sing along. And I've always had like musical theater was like really interesting to me, but I was like I'm a dancer, that's it.

Chelsey: 5:10

So after I graduated high school, I continued to dance. I was like in a dance company and then I got an injury and couldn't dance for a while. I had to take a break. So I was like I have all this free time that I had dedicated to dance. Maybe I'll take a couple of voice lessons, like I love musicals. And I took my first voice lesson. I was like well, that was it. Where can I pursue this? I need to do this, I need to sing and dance. So I looked at different programs. I auditioned for a couple in the British Columbia area, but ultimately I was like New York City is the hub of musical theater, so I need to get myself there. So I came out here to go to the American Musical and Dramatic Academy and I've been home back in spurts living in Canada, but mostly I've lived around here since then.

Jen: 5:57

And what year did you move.

Chelsey: 5:58

I moved in 2010. So it's almost been 15 years since I moved here, yeah.

Jen: 6:05

Wow, you're a New Yorker now.

Chelsey: 6:09

I am. There's no turning back. I can never go back to like the polite, demure Canadian I was. You're still super polite, I mean, yeah, no, I do still apologize when I walk into a wall, but you know.

Jen: 6:22

You walk into a wall. Wait, I hope you're not doing a bunch of that I'm only like a couple times a week.

Chelsey: 6:28

It's fine.

Jen: 6:30

Oh my gosh. So can you share how living with rheumatoid arthritis has influenced your approach to performing and your teaching?

Chelsey: 6:39

yeah, um, I mean, when I first was diagnosed, I was kind of I was looking around for other people with experience because I was like am I going to be able to dance again? Is this one of those cases where, like no more dancing, you're out? Really, that wasn't the case. Oh, I do find that I get quite sore if I'm too active one day or something like that. So really my approach nowadays is just prevention all the time. So if.

Chelsey: 7:05

I even feel like little bit of pain coming in. I like get out the knee braces, the ankle braces, whatever I can to stabilize my joints so that I'm not feeling too much pain the next day, and then, if I am in a little bit of pain, ice packs, heat pads, tiger balm, that kind of stuff. Really, my approach is just prevention, prevention, keep everything stable.

Jen: 7:29

Okay, so what is your favorite pair of tennis shoes? Love a Hoka.

Chelsey: 7:36

I have to get fresh ones every year because I wear them every single day. Yeah, I love my Hoka's. Usually I go for the Arahi brand or or I don't know what. What's it called that style?

Jen: 7:49

Okay.

Chelsey: 7:50

Yeah, that's. That's the one I've go to to. I've worn them for like three years now and I love them so much now do you get insoles put in yours I? Don't no. They're fine on their own. What do you need, insoles?

Jen: 8:01

so okay. So my husband has hokas and he swears by them also, but he has to have the souls he's got, like the plantar fasciitis and all that kind of fun stuff and he swears by them, yeah, swears by them, and every time they get worn out he orders another pair from Amazon. But I can't get used to it. I cannot decide if it's the shoe I have or it's the insoles that I have, but something and mine aren't hokas. I think they're called ultras because they have a nice wide open box because I have you know all the fun things going on on my toes.

Jen: 8:34

We love it. So I can't decide if it's the shoe or the insole, and so every time I try to wear them they just don't quite feel right. But I don't know what I did with the old insole, so I tend to go back to the Asics again.

Chelsey: 8:47

Uh-huh, uh-huh.

Jen: 8:49

Which I think you have the same pair of Asics as I do, just a different color.

Chelsey: 8:52

Yeah, I do love them. I was actually wearing them today. I went out for a walk. They're my favorite Central.

Jen: 8:59

Park walking shoes. I call them my special shoes because they came from Danny and so I don't want to wear them all out Exactly and so they are my special shoes. They come out for my special occasions. It's like my dress-up tennis shoe.

Chelsey: 9:12

Okay, yeah, yeah, that's good. See, my Hoka's are kind of like my everyday shoe, but my Asics are like my. I'm going to go for a walk or I'm going to go get some exercise shoe. They're my workout shoe.

Jen: 9:24

And remind me, which color did you get?

Chelsey: 9:26

Mine are like a hot pink with some blue mixed in. They're beautiful.

Jen: 9:31

Now did you see the design change this year? I did not.

Chelsey: 9:42

Yeah, you can't change. It's not like too bad, but they don't have the same ones that you and I have.

Jen: 9:46

Oh, we got like limited edition. Okay, we deserve it right. Okay, so what would you say would be your favorite gadgets or things in your toolkit?

Chelsey: 9:54

Ooh, definitely any type of like brace. I love the compression, so I have like ankle braces, knee braces. I also love KT tape for my wrists and sometimes my fingers. I love to tape those up. I feel so much better as soon as the tape is on. Also, I've been using I have this like finger roller. It's a strange device that, like I can roll and massage my hands and they help with the like finger pain. I'm trying to think what else. Oh, and like I have a massage gun. Love that thing.

Jen: 10:25

And you have a kitchen mama, don't you? No, no, you don't have the kitchen mama.

Chelsey: 10:30

It depends. I probably have a knockoff version have the kitchen mama, it depends.

Jen: 10:36

I probably have a knockoff version. It is the most amazing can opener I have ever owned in my entire life and I know I sound crazy being happy about a kitchen gadget but you set it on top of your can and you push the button and you just watch it do its thing. It's incredible. I love it. I'm going to have one of those, and even my family members that have came to my house that don't have arthritis problems. They love it, just because I mean it's really that easy. You set it on the can, you push the button and you go oh Wow.

Chelsey: 11:08

I've got like a little electric one that I have to like plug into the wall and then I put the can into it and it like holds it secure and it unlocks it or opens it for me, but it's like big, takes a lot of space, yeah.

Jen: 11:19

Yeah, yeah, I think I used to have something like that, but this is a nice little thing. And then I have some other gadget from that company that kind of helps open all kinds of different bottles and such Cause. You know, I have a really hard time with water bottles and things like that. Yeah, yeah. So what do?

Chelsey: 11:37

you do for that? Um, I've got a little silicone jar opener. It has like three different sizes and it can squeeze the top and twist that one I like a lot. That's really it for opening jars.

Jen: 11:48

There's been times where I just like haven't.

Chelsey: 11:50

I've just been like well, I guess I'm never eating those pickles because I can't get them to open.

Jen: 11:55

Okay, I have a solution for you, do you? It is called the Jiffy Twist. It's on Amazon. It's super inexpensive. You attach it under, like your cupboard in your kitchen. Yeah, and so when you want to open that bottle, you know what I'm saying. I know what you're saying. When you're going to open the pickles, you just push it in there and twist.

Chelsey: 12:20

Oh.

Jen: 12:21

There you go. I think it's like 10 bucks maybe.

Chelsey: 12:24

Oh, it's called a Jiffy Twist. Jiffy Twist, I'm looking at that.

Jen: 12:29

Thank you, you're welcome. See, I knew we needed to chat.

Chelsey: 12:33

Yeah, I'm out of the loop. I don't know any of the new gadgets.

Jen: 12:37

Yeah, but I need to be in the loop because you might recommend things too. So there we go All right. So back to my questions. Mm-hmm, what are some challenges that you've faced in the entertainment industry as someone with a chronic illness?

Chelsey: 12:55

entertainment industry. As someone with a chronic illness, I think most of the obstacles I've had are my own that I'm putting in front of myself. Like I had a conversation with my boss a couple months ago where I was like going through a spurt of really like I was just in so much pain all the time and I was saying to her like look, I might have to retire. Like at what point do I retire? Since I've been diagnosed, I've been like this disease isn't going to control me, but like there's a certain point where, like it's not fun anymore because I'm in so much pain. You know what I mean. And so I was like I don't know, I might need to retire soon. And she was like shut up, this is not an issue, you're not at that point yet. Like you can keep going. Like there's things.

Chelsey: 13:37

I think sometimes I stop myself a lot or I tell my I like catastrophize a lot where I'm like this is it, that's the end I'm going to. You know everything's over now. I think that's really the biggest issue. I've never had any pushback Like again even my boss, when we are doing a show, if I am in a lot of pain, she's like all right, we'll just like do this, we'll do that, we'll, we'll change this, we'll fix that. Everyone is very like accommodating of me. It's myself I'm the one that like is like oh, I'm never going to make it in this industry. You know, I, I those barriers on myself, yeah.

Jen: 14:07

And I think that's true for you know, even the normal everyday person we are always so much harder on ourselves than anyone else's. Our expectations are crazy compared to what anybody else would think of us.

Chelsey: 14:21

For sure.

Jen: 14:22

And you have the best boss I really do.

Chelsey: 14:25

It's nice when your boss is also like your good friend.

Jen: 14:29

Absolutely.

Chelsey: 14:30

Yeah, no, that's very good.

Jen: 14:32

Okay, what are? Oh nope, I already asked you that one Don't answer me. How has your role at the 92nd Street Y allowed you to merge your passions for teaching and performing?

Chelsey: 14:44

I mean, I'm just so lucky in the job that I have a role is like no, it was able to kind of make my job fit my interests and my abilities. I love to teach there's. You know teaching is an aspect of my job. I obviously love to perform, so that's a part of my job. I also get to be kind of on the creative side sometimes, so that's been worked in. The things I don't like, like administrative stuff, I'm like well but, I, have to do it.

Chelsey: 15:11

So I understand. It is like I'm able to get so many of my favorite things all in one that I don't know that I'll ever find another job that ticks all these boxes for me. You know what I mean. It just kind of is the dream job.

Jen: 15:26

I get it all I love it Well, and that's how jobs should be right, when it doesn't feel like a job and you get to go and do things that you enjoy and have fun. Yeah, it's so much more. It's just part of your life.

Chelsey: 15:39

Yeah, yeah, no, it's great, I love it.

Jen: 15:43

I love it for you. Okay, what are some challenges that you face? No, I already asked you that too. What do I keep doing? Okay, every time I go back to the question page, it takes me to back to the same question. Just forgive me, I swear my brain is here. Of course, we'll just call it brain fog. We'll just pretend yeah, yeah, yeah, it's a symptom. Guys, what do you love most about working with young performers in the musical theater?

Chelsey: 16:12

I mean, what's not to love? It's a little cheesy but it is. You get to grow this love of musical theater in kids at a young age. Lots of kids come into our program and either they're similar to how I was when I was a kid, where it's like their parents think they're shy and they want they know musical theater is like a loud and out there genre, so they want to get their kids more confident and more outgoing. So there's kids like that, that are like a little shy when they first enter. And then there's other kids where maybe they don't fit in in the robot club, they're not so good at painting and or maybe music isn't their strong or maybe they're not very good at sports. So they come to us as kind of like I don't know, maybe they'll be good at this.

Chelsey: 16:58

There's always like a good community that's built in musical theater, that all the different types of kids either the really shy ones or the really outgoing ones are the ones that don't find they fit in anywhere else somehow all come together and get along and become friends. It just like it's such a team building type of activity that, like you, you yeah, I love to see the community that forms around the theater and then the kids. Obviously they want to like keep coming and doing more shows because their confidence is growing and they're here now, they're making friends and like really it's just like such an eclectic group of people that do musical theater that it's always like fun to watch people grow at different paces and and stuff and always, yeah, I love it. It's really cool to see.

Jen: 17:42

I can tell you love it because you're lighting up as you talk about it. I love, love it. Yeah, all right. So what age group is this that you're working with?

Chelsey: 17:52

So we work with kids ages two and a half to 18. Whoa, yeah. So we'll have a couple of classes. Obviously, they're not always all together at the same time. So we'll have a class that's like two and a half to four, a class that's four to six, but then we do have a class that's like ages five to 15. Lots of people, you know, like a 14 year old, will want to take the class, and sometimes they're like, oh, baby's in my class.

Chelsey: 18:14

But one of the reasons we do that is because we want to. We want to give kids a full spectrum. We want them to come into the program new and looking up to other kids as role models and wanting to be like them. And then we want them to eventually get to the point where they are the role models and they get to teach the younger kids how to do it. And it's all part of the team building thing. We want to teach kids how to work together with kids of all ages and all ranges. And then, of course, if we're making a musical, if we're doing Annie, there's children in the show and then there's adults. So you need a range. You're going to need the five-year-olds and the 15-year-olds to work together, but it's quite a range that we work with, but everyone's working on different things at the same time, so it works.

Jen: 20:00

That's pretty cool. Now you've got me thinking about my grandson going. Okay, daughter, you need to get grandson doing some of this he loves it he loves his glasses. Yes, oh my gosh, could you imagine his little stinker face, that big grin of his? Oh, my goodness.

Chelsey: 20:14

My gosh so cute.

Jen: 20:16

What do you love most about working with young performers? What I just answered, too, is that the same. Are you serious? Are you serious? Can you forgive me?

Chelsey: 20:24

Yeah, yeah, I was just like wait, but I did I. I'm sure I can find more things to say. No, you did.

Jen: 20:30

Why does it keep doing this to me? Every time I go and click away and I look at you again after I ask you a question, it takes me back. How rude. I'm sorry, I'm sorry, I swear I'm usually more with it. I think you would know that about me by now.

Chelsey: 20:42

Yes.

Jen: 20:44

All right, I promise I'm on the right one. Okay, how do you manage? Manage your rheumatoid arthritis while maintaining such an active and a very demanding career?

Chelsey: 20:54

I mean, again, it's all prevention, pacing myself, like I do on my days off. I do have to rest. I can't, on my days off, go to the zoo or spend the day on my feet. Like I do take a full day to recover from all the stuff I did the week before. So, like recovery is a big thing and prevention is huge. It's just like pacing myself.

Chelsey: 21:16

Sometimes I'll go into teach and I'll need to make sure that there's like a chair there just in case I need to like go sit down while I'm watching or something. But it is like even performing part, obviously I'm on my feet the whole time. But then teaching too, I'm on my feet because it's we're not sitting in a classroom at desks like I am up on my feet the whole time being around doing it with them. So I do have to make sure that I have equipment there that I can take a rest if I need to, and I always have like co-teachers, so if I'm like my knees are not having it today, I can like have someone else come in and do that and I can like coach from the sidelines a little bit. Yeah, it's prevention resting and then just like being prepared.

Jen: 21:53

Well, and that's great because you can still cheer them on. You can still be like I'm so excited for you and, yes, you got it Totally, but somebody else can be doing the maneuvering if you're not up to it.

Chelsey: 22:04

I'm too old, I don't have to do all of it.

Jen: 22:06

Oh my gosh, you are not old, don't even start with me. No, but my body thinks I am trust me. No, no, that's, that's, that's definitely one of the bad parts, right? Yeah, yeah, so with your perspective on chronic illness, do you? Think that has evolved over time. When it comes to yeah, definitely.

Chelsey: 22:27

I think there was a time when people were quite ashamed to talk about their chronic illness and stuff. I really don't know. I mean now, in the time that we are, I don't know why there would be shame around it. There was, there was, there was always shame, and right now I feel like people are so much more open and willing to share about their experiences.

Chelsey: 22:48

There's no judgment when it comes to a chronic illness. If you have a chronic illness, no one is like ew, what did you do to deserve that? There's nothing like that, it's all. People are just more open, I think, to listening to other people's experiences, which makes advocacy a little bit more easy. You're not fighting so many uphill battles, You're just out there saying it and you're offering advice to other people and offering suggestions and showing people your way of life, and people are so much more understanding and there's a lot more like cheerleaders out there too that are like you're doing the thing. Good job for speaking out and you know helping others there's. Yeah, I think it's so much different now than it used to be.

Jen: 23:28

It doesn't seem like with social media that it's just made it that much easier for us to feel comfortable with that as well.

Chelsey: 23:34

Absolutely. I think without social media, lots of people are probably like I've never heard of rheumatoid arthritis and so I don't know anyone with rheumatoid arthritis. I'll just keep it to myself. But on social media, yeah, you can reach across to people all over the world and connect with them over these like commonalities. It's really great.

Jen: 23:53

What do you feel like is probably the biggest false information about rheumatoid arthritis that you've heard from people?

Chelsey: 24:01

I mean I was first diagnosed, what I saw a lot of is like you're going to be in a wheelchair, you know, before you retire or thing like that, or yeah, it is going to be so disabling. But I think since the since room like rheumatoid arthritis has been around for a long time, obviously, but in the last I don't know, looks like decade or so there's been so many new treatments and medications out there that that's not necessarily the prognosis anymore out there, that that's not necessarily the prognosis anymore. There is a way to kind of slow down the deterioration rather than just the coming to it. So I do think that's like a big one. Is that you think, okay, it's over, I'm never going to be able to move again? That's not true and there's new ways to move. It's never just like you're completely immobile. There's always going to be some way that you can move around.

Jen: 24:54

Absolutely I agree with you and I feel like when I was first diagnosed, I was convinced I was going to end up in a wheelchair, and I think it's because of all that misinformation that we hear and we see all the time. Yeah, we are convinced that's, that's our future, right, and it doesn't have to look like that.

Chelsey: 25:09

No.

Jen: 25:10

But I think one thing that irritates me, and I don't know if you've ever experienced this, but I remember going into the infusion room and sitting down to get my infusion, even like the little sweet old ladies in there, looking at me and saying, oh, you're too young to be having to deal with this, and I'm like, do you really still think this is an old person's disease? Like you really think that still.

Chelsey: 25:32

Right, right, yeah, no, it's true, have you dealt with much of that? Not so much. I think I do it to myself more. I think I'm like oh, I'm just really old, like I did it a couple minutes ago and no, I haven't seen it too much. I think the people that I do tell about my disease that they're never like, oh, you're too young for that. I actually haven't experienced too much of that, which is good. Yeah, I mean, I think if you explain it to them, if you just say I have arthritis, and they're like, oh yeah, my grandma has that. But sometimes if you say I have an autoimmune disease called rheumatoid arthritis, I think putting that autoimmune part in front makes people eat it a little bit.

Jen: 26:12

Yeah, but like I said before, I think my biggest frustration was in the infusion room. I mean, I was just, I guess, in shock that these people that have the same exact illness as me and are there for the same reason as me, are looking at me like you're so young and I'm like there's a nine-year-old girl in here. She has RA also Do you not get this Come?

Jen: 26:34

on people. Wow, the well-intentioned people. Yeah, what advice would you give to people like you? You know people want to do performing and live with a chronic illness.

Chelsey: 26:46

My advice would be to find ways to make it work for you. Not impossible, it is very possible. But you do have to know yourself and know your limitations. Me definitely can't do some of the things I used to be able to do as a dancer and I know that about myself. So when I'm going and we're doing choreography and there's supposed to be like a big kick, I'm just I'm not going to kick my leg. And if I'm not in being put on stage to dance that section because I can't kick my leg, then like, do accept that I can't be upset because I can't do it anymore. So I think part of it is like you have to accept that your abilities might change and you have to know where you are with that and be accepting of it. But again, it's not impossible, you can still make it work. I love that.

Jen: 27:32

What future projects or goals are you excited about, both in your career and?

Chelsey: 27:37

Boy. Right now I'm in school, which is kind of exciting. I mean, I don't like school. I wish I didn't have to do the homework all the time, but I'm excited for what I will end up with. It does feel like I'm working towards something, which is nice. I don't know what I'm going to do with that degree yet, but it's nice to be able to say that I'm working towards this and like bettering myself and doing that. And it is a little bit of like I can have a backup plan in place just in case my body does start to take a turn for the worse. Because right now all I've done I mean I've had like retail jobs and waitressing jobs but my career has been performing and teaching and if I don't have that, I'm like if I can't perform anymore, I'm going to need some sort of fallback plan. So going to school is kind of a way of me building that foundation to do something else if I can't continue with what I'm doing now.

Jen: 28:31

And let's catch people up. So you're dating. So you're going to school, you're dating. I mean you're doing all kinds of things. I mean share as much as you want. I hope I'm not crying.

Chelsey: 28:44

No, no, I'm in a relationship. It's going really well. It is like kind of serious. So we're like moving right along, which is good I don't know what else to say. I mean it's exciting as well.

Jen: 28:57

I guess that's a future project too just love how smiley I mean for the people that can't see you and can only hear you yeah, you're just beaming, you're absolutely glowing with excitement. I just love it. It's infectious. I'm really happy, I am yay. I'm so happy for you. All right, so another update. So you've had some of your medications change over time. Yeah, so let's kind of update. You know the people that know you, okay, okay.

Chelsey: 29:25

So last summer I started taking Rinvox, which the first like six weeks. I was taking Rinvox and prednisone when I first started. And I started taking the prednisone off and I found that I was feeling really good on Rinvooke, which I hadn't had results like that in the three years prior, like trying all the different medications. I hadn't had results like this. So I was very excited. Right, it's like whoa wait a minute. I actually feel almost normal.

Jen: 29:53

Who knew this was such a powerhouse game changer?

Chelsey: 29:58

almost normal. Who knew this was such a powerhouse game changer? And I had tried a jack inhibitor the year before. It didn't stay on it very long term because, like I was on it for a couple weeks and then I got COVID and had to stop and then I only had a few weeks left of that trial period. So I just kind of gave up on it. And so I spoke with my doctor and was like you know, the Zell Jans I was on might have been working, but I didn't give it a good enough try, Like I would like to try another Jack inhibitor. So they put me on RINVOC and, yeah, I started feeling pretty good.

Chelsey: 30:23

Then I started noticing that every couple of weeks I was getting some sort of illness. Like I was on it for about six weeks and then I got a UTI. Once that was cleared I went back on RINVOoke and like two and a half weeks later I got strep throat and then I had to come off of the Rynvoke, take some medication for the strep throat. Then I got back on the Rynvoke and then I got a sinus infection. And sinus infections have been the bane of my existence.

Chelsey: 30:48

The year before I got like I hate them so much. I got like five sinus infections within six months the year before. So like every time I get a sinus infection, I'm like anyway. Got back on the Rhin-Voke and then I got COVID. So I went to the urgent care the virtual urgent care and was like, look, I have COVID, can you please send me some Paxlovid? And they were like we can't because you're on Rhin-Voke. And I was like, well, I'll just stop taking the Rhin-Voke. And they're like, well, we can't do that without your rheumatologist's approval. So can you get a letter from him? What? Yeah?

Chelsey: 31:18

So I contacted my rheumatologist and was like I need Paxlovid, send it to me. And he said, yeah, okay, but let's talk about your Rhin-Voke, how's it going? Because this is a doctor who didn't require any sort of blood testing Anytime. I said, hey, I'm having a problem with this drug. He'd be like, okay, come on in, let's talk about it. But he didn't really care at all. So he was like, how's Renvoke working?

Chelsey: 31:41

And I'd been on it for six months and he had no follow up before that. And I told him like I think it's working, but I keep getting sick, which is like common when you take an immunosuppressant. He was like well then, I want you to stop taking it. And I was like what he's like, stop taking it and we'll find another time that you can come in and we can talk about a new drug.

Chelsey: 32:03

And I was like so frustrated because I'm like I I just told you I think it's working and now you're telling me just stop taking it without checking any blood tests to see anything. So I was like, screw it, I'm going to find a new doctor. So I found a new doctor. I am so proud of you Really am. Yeah, I was just over him. I was like you're not checking in my blood tests and I had been with him for like two years at that point and I'd only had one blood test because I demanded it, but in those two years I got one blood test. That's terrible when you're on these drugs. I'm really surprised.

Jen: 32:39

Yes.

Chelsey: 32:41

Usually it's like every three months.

Jen: 32:43

Even to be on methotrexate, I was required to do blood work every month.

Chelsey: 32:47

Yeah, I was on methotrexate for a full year without being monitored in any way, so I was like I'm going to find a new doctor. Because he was, I didn't trust him anymore.

Jen: 32:57

Yeah well, and that's just red flag after red flag, totally.

Chelsey: 33:01

Oh. I found a new doctor, but I had to wait like three months to see him. So in the meantime I was like well, this doctor told me to stop taking the rinpoch. I like it, but I also don't want to take it completely unmonitored, so I stopped taking the Rhin-Voke. I eventually did see the new doctor and he was like no, get back on the Rhin-Voke. If you think it's helping, take it. He was like every drug there's every drug you're going to get sick more than a normal person. That's normal. But if you feel better, that's what counts. So get back on the RhinVOC. What are you doing? So I did.

Chelsey: 33:35

I got back on the RINVOC and then right away got another sinus infection. So I met with my ENT. I know I was like. So I met with my ENT and I was like look, I need to stop having these sinus infections because it's like deterring my path to recovery on RA. So can you fix me already? So I had a sinus procedure, a balloonoplasty, where they like opened my sinuses so it could drain better, and then they like I have I don't know, I can't remember what these things are turbinates.

Chelsey: 34:06

You have turbinates in your nose and he like shrunk them down a bit so that it's just more open. In order to prepare for that procedure, I didn't be on RINPOCH. I ended up being off of medications for four months and I have never been in so much pain in my life, like those four months were excruciating. I went back to when I was first diagnosed. I thought help, because I couldn't move my shoulder at all, like and I've never had that kind of immobility since being first diagnosed until that point when I was off medication, I couldn't move my arm and like I'm doing these shows and I'm supposed to be dancing and my whole arm is just like bum, it's just swinging by my side. It was horrible.

Jen: 34:49

I was in so much pain.

Chelsey: 34:51

Oh, after that procedure I was like please, let me go back on. I had to wait a month for all the swelling to go down. Finally got back on it and was like, okay, here we go, got another sinus infection. No, it was because it was still like swollen in there. It wasn't fully recovered, so the airways that he had like opened up weren't fully open yet because I was swollen. So whatever, now I'm like back on it. It's been three weeks with no illness, yet yes, I got sick last month and it did not turn into a sinus infection. So I'm thinking that maybe that worked too. Hallelujah.

Jen: 35:33

I'm on the mend.

Chelsey: 35:33

I'm feeling very optimistic. Now that the sinus thing is out of the way, I'm on the mend. I'm feeling very optimistic now that the sinus thing is out of the way. I'm like okay now. Hopefully all paths are clear for me to stay on this medication and feel better, because I do think it helps. Every time I got back on it I started to like feel good again, and then I come off of it and be like ow ow, ow, ow. So I think I think I'm good now.

Jen: 36:00

I think it's going to be good, okay, well, I'm sitting here thinking why did we not talk about this a long time ago? Because I have a million questions for you about this procedure you had done Okay, so we are going to talk soon, because I have so many sinus infection issues.

Chelsey: 36:11

And I'm also on Renvox. Yeah.

Jen: 36:14

So, as you know, I have tonsil problems. Problems too, and I need my tonsils out, and I've been avoiding it oh gosh, it sucks, it really sucks it really does. But you know what I love when we're in good company and we can chat about it and we can vent about it. Yes, absolutely, I've always enjoyed about you. You're a wonderful person to vent to and vent with At a time. Yes, oh, my goodness, okay, well, I can't think of anything else to ask you. Is there anything we haven't?

Chelsey: 36:44

covered. Um, I don't, I don't know. I mean probably, but nothing I can think of off the top of my head.

Jen: 36:53

I mean I don't want to sit here and just keep rehashing the same stuff over and over, but I've missed you and it's so good to chat with you and to all of our listeners out there. If you have not Chelsea, if you have not heard Chelsea, you need to first of all follow. She still has the podcast account open on Instagram. You can still go, follow and catch up on. My Immune System Hates Me. I'm sure they can still listen to all the episodes.

Chelsey: 37:19

Yeah, they're all still available.

Jen: 37:22

And she's just amazing. So you need to check her out and for all the people that have been anxiously waiting to hear a catch up on you, you're welcome.

Chelsey: 37:31

Maybe next time it won't be like three, two, three years till we talk again.

Jen: 37:35

Yeah, yeah, well, and maybe next time. I cannot have brain fog and keep clicking on the right, wrong questions every time but that's what makes this podcast so uniquely yours yeah, I'm, something special that's why people listen to you. They want to hear you well, and I think it helps that we're relatable right. People come back because they relate to all our crazy and so yeah, you're welcome. Well, thank you for joining and I'm going to probably bring you on again please I don't know the next six months to a year.

Chelsey: 38:06

We have to have you back on.

Jen: 38:08

Yeah, I'd love to yeah, all right, my spoonies sisters, until next time, don't forget your spoon and go check out. Bye.