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Jen
Foreign.
Kathy Chester
Your host, Kathy Chester. And welcome to the Move it or.
Podcast Sponsor/Announcer
Lose it podcast, a podcast about all.
Kathy Chester
Things that move the mind, body, and soul. The Move it or Lose it podcast is for information, awareness, and inspirational purposes only. I am not a doctor and I don't even Play 1 on TV, so please consult your doctor before making any medical decisions. The views expressed by advertisers, guests, or contributors are their opinions and not necessarily the views of the Move it or Lose it podcast. Hello, welcome to another edition of Move it or Lose It. Today I finally have the Spoonies on. So I wanted Jen on. For a long time, I have read and known about the Spoonie sisters, and not as much as I actually thought I knew. So today, as we discover more about them, I'm excited, Jen, to have you on. We tried to do this back and forth, and we are just a little bit too busy. So I am very excited to finally have you on and to learn more about how you got this started and where you're going, the community, and just all about you and how you even started doing this. So welcome.
Jen
Hi. Thank you for having me.
Kathy Chester
Absolutely. So we laughed a little about our Pokemon cards and how we're just collecting our autoimmune stuff, like Pokemon cards. So before we go into the community and why we do it, oftentimes there's a reason why we start these things. It's not like we just thought, what do we want to do for our life? I know I want to work with diseases. So what brought you into the world of autoimmune and sickness? And wanting to be a part of that community and help with that community.
Jen
Yeah. So in 2012, I was officially diagnosed with rheumatoid arthritis, and.
Kathy Chester
Which is fun, right?
Jen
Oh, yeah. It's a blast. And I had no idea that this was going to start a whole life change for me.
Kathy Chester
Yeah.
Jen
And in 2022, I met this awesome girl. Her name is Chelsea. And I'm gonna butcher her name, last name, if I try to say it, but it's Chelsea. And she lives in New York City. She hosted a podcast called My Immune System Hates Me.
Kathy Chester
Oh, I love that.
Jen
Okay, genius name. Genius. I quickly got hooked on her podcast.
Podcast Sponsor/Announcer
Okay.
Jen
And we became fast friends. Well, you know, as life happens, she wanted to get back into dancing again. She also teaches children, and she just has a blast.
Kathy Chester
That's awesome.
Jen
And there we are. The podcast is going away. The support group is going away, and I saw a need in the community to keep something like that going. And I had noticed through what I was already doing on my Instagram. I was collecting sisters, I was collecting friends. And so I was like, why don't we call this my Spoonie sisters?
Kathy Chester
Yeah, I love that.
Jen
That's the people I'm collecting.
Kathy Chester
Yeah.
Jen
And. And so I kind of started this, this Instagram account and community.
Kathy Chester
Yeah.
Jen
Through her encouragement and many others, I finally decided to pull the trigger and start a podcast, which was intimidating and scary.
Kathy Chester
Yes, I agree.
Jen
I don't think we talk enough about how, how scary it can be when you start doing venture like this you've never done before.
Kathy Chester
Right.
Podcast Sponsor/Announcer
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Kathy Chester
To the website@footscientific.com check them out and.
Podcast Sponsor/Announcer
Of course, use my discount code. It is Ms. Disrupted all caps 30 and you'll get $30 off your pair. And also don't forget 60 day guarantee. If it doesn't work for you, then you can return it. And that is why I love But Scientific. They're a company that truly cares about our needs. So don't forget, check them out. I love my partnership with them. Have a great day. And you have people that have been.
Kathy Chester
Doing it for a while and then when you go into like interview a doctor or something, you're just like, what am I doing? And am I saying the right things? And that's. That's very intimidating.
Jen
Exactly. It really is. But what I've noticed is they're just like the rest of us.
Podcast Sponsor/Announcer
Right.
Jen
And I've actually met some with chronic illness as well. The lady that runs room to grow. She is a pediatric rheumatologist. Also has rheumatoid arthritis herself.
Kathy Chester
Okay.
Jen
So it just goes to show, you know, who you're going to meet, and they are.
Kathy Chester
Right. Yeah. I made sure that you found the same thing where I have gotten so much information. I've actually gotten. I've. I've gotten a doctor that I've loved from doctors that I've interviewed. And it's just. It really opens your eyes and really helps you to understand so much about. About doctors and about. You know, sometimes we can. We can be really harsh with our doctors, and it really helps you to understand, you know, that. That they go through a lot, too. And so it's really open my eyes to that, and I'm sure for you as well. So it is. It can be intimidating, but it is a whole world of just learning so much about everything, and I really enjoy that. About podcasting now, for your podcast, Jen, do you do it weekly or bi weekly? Or how do you do yours?
Jen
When I started out, I was doing it bi weekly, but over time, people were pushing for more, and so it turned into a weekly thing. I do take off a chunk of time, so during summer. I still record throughout the summer periodically, but I turn off the podcast for the month. We're not producing anymore, or not the month, the whole summer. Because I really want to be able to focus on spending time visiting our children and traveling.
Kathy Chester
Right.
Jen
And things like that. And, you know, we've got our son getting married this summer.
Kathy Chester
Wow. So I'm getting married. You look like you're 20.
Jen
What? Gosh. Thank you. Well, I'm a grandma. I'm 45. What? Yeah.
Kathy Chester
That's crazy. It does not seem like. Wait, what? Is the same. Okay, well, he'll. He'll figure that out.
Podcast Sponsor/Announcer
I hope.
Kathy Chester
I don't know. I just said something weird. Okay. Yikes. So something. Yeah, I think we're okay. All right.
Jen
Okay.
Kathy Chester
So you are. I cannot believe that you are in your 40s or whatever, because you don't look like a grandma. I just had my first grandbaby, and so it is very. Isn't that so exciting? Isn't it so different?
Jen
I think as much as we try to prepare for what it's like, we have no idea. We have no idea. Because. Because now you get to be the fun one.
Kathy Chester
Right.
Jen
Worry as much about the rules.
Kathy Chester
Right.
Jen
You get to have them come over and spoil them. And so my grandson is actually coming over here in about a week, actually, this weekend, going to the park and playing yes. Yeah. All the fun things.
Kathy Chester
Oh, I love that.
Jen
It's such a fun age.
Kathy Chester
I love it. That's awesome. She's only one, so we're getting into like, you know, where she's going everywhere and I'm like taking everything out, learning what I can't about anymore because she can reach and all that stuff. So it's been. It is the best feeling. It is amazing and I love it.
Podcast Sponsor/Announcer
So I'm glad for you for that.
Kathy Chester
But I can hardly believe you look so young. I can't believe that. So thank you.
Jen
Pro tip. When she gets a little older, about the age of two, get Magnificles because I'm telling you. Oh, yeah, they love the Magna tiles.
Podcast Sponsor/Announcer
Oh, good.
Jen
Their favorite thing. Yeah.
Kathy Chester
Okay. I want to get them. Like I should get them now.
Jen
Yeah, yeah. Amazon, they have quite a selection. We even got our grand magnet. Some that have dinosaurs. You. Oh, build your things, but then you have the dinosaurs to play with along with.
Kathy Chester
Oh, I like that.
Jen
It's also magnetized to the tiles, so.
Kathy Chester
Really? Okay, I'm in. I'm gonna go get it. Okay. I love that. I love the grandma talks that we got to have. That's awesome. We just gave tips to. I know a lot of grandmas that are listening, so that's awesome. So then like, so you did this. You started so before you did the podcast. But talk to me about the community that excited you.
Jen
What I enjoyed was getting to have that face to face time with each other. And when she was still hosting her support group, we would get together on Thursdays. And the support group was geared towards only people with rheumatoid arthritis.
Kathy Chester
Okay.
Jen
And so I have one now that I opened up more to just anyone with a chronic illness.
Kathy Chester
Okay.
Jen
Because I kind of like hearing about what other people live with, find it fascinating. Plus they need just as much support as the rest of us.
Kathy Chester
Right.
Jen
But I love that weekly check in. We can vent, we can cry, we can laugh.
Podcast Sponsor/Announcer
Yeah.
Jen
We even have. I have another group that I'm in that is a book club. So we do it, but we also read books and talk about.
Kathy Chester
Yeah, that's awesome. So you do you do your support group weekly?
Jen
Actually, right now the support group is monthly. But I keep saying I'm going to implement it into to twice a month. It's going to happen at some point. But just life has been crazy.
Kathy Chester
Yeah. Oh, I agree. I mean, I. I always think like, maybe I should do morning and evening. I try to figure out when and how because I do the women's one. But then I also do like a newly diagnosed one. And so I'm like, yeah, like, how I wish I could like duplicate myself. And, you know, which I'm sure you feel the same. And so it's hard, but I.
Jen
There's hours in the day.
Kathy Chester
Right. It's like, so when you do that now, do you have some help in the support group? Do you have other spoonies that are.
Jen
Yeah. So right now she's kind of taking a hiatus, but my friend Megan from it's Meg's Fitness, she is the one who decided to do this with me because we were always talking about mindset shifts and having a healthy mindset, and we just did a lot of collab work together and we finally decided, okay, let's start this support group that's. That's focused on having a healthy mindset.
Podcast Sponsor/Announcer
Yeah.
Jen
And sometimes we would go in and strictly just let's have a catch up. Let's check in on how everyone is doing. But other times we would come in with a presentation of talking about ways to implement having a healthy mindset. And, and sometimes they had to do with a season or a holiday.
Kathy Chester
Right.
Jen
And. And so like for spring, we would do how to spring clean your life.
Kathy Chester
Yeah. Love that.
Podcast Sponsor/Announcer
Love that.
Jen
We would give a lot of tips about that. But then for Valentine's Day when we did that month, we got together and we made Valentine's cards to send to each other.
Kathy Chester
Oh, I love that.
Jen
You never know what you're going to get. But right now I'm kind of running it by myself. But yeah, it's a lot of the same women that come and go in.
Kathy Chester
Yeah.
Jen
So we have a lot of fun together.
Kathy Chester
Yeah. Now, have you ever thought, I know the guys have done this and I've always wanted to do this, like, have like a fun, like, getaway with the girls.
Jen
You know, I've thought about it, but it seems like everyone that I know lives so far away.
Kathy Chester
Right.
Jen
I know this person to me is in Arizona, but it seems like everybody else is either on the east coast or. Or not far away from the East Coast.
Kathy Chester
Right, right. Yeah, that is. It's very tricky. I know the guys somehow do it, but I don't know how they do because I'm like, huh, that just seems like it's so difficult to do. But it is a dream that I have that one time we'll be able to do that. But I do like that you shifted to the chronic illness, because I've often thought about that with mine is to have. Because I have so many. You know, as you. As you build your.
Podcast Sponsor/Announcer
Your.
Kathy Chester
Your people group, as you build that community, you have so many people with so many different autoimmune stuff, as you know, as you have three. And as well as I do, it.
Podcast Sponsor/Announcer
It builds.
Kathy Chester
And so you find yourself wanting to make it more of a chronic thing than it just being, like, an Ms. Thing or a rheumatoid thing. So I. I have, like, thought on that often. Like, do we make this more into a chronic thing? And so I've been. I've been really thinking about that lately, so you're getting. Getting me thinking more, so. Thank you. So. So you've been living with rheumatoid. That was. Was that your first diagnosis?
Jen
That was my first diagnosis in 2012.
Kathy Chester
Okay. And so what did you think? I remember I was. When I was diagnosed with it, I was just 20, and I was like, what? That's like an old person's thing? Like, do I even need to worry about this right now? For real, how did you know?
Jen
Exactly? I think a lot of us think that because that's kind of the way it's produced to us through time is we think. You hear the word arthritis, your mind automatically goes to, oh, that's the old person's disease. I'm fine. You know, there's other things I could get, but I'm fine.
Kathy Chester
And.
Jen
2010, I was 30 years old raising three middle schoolers. And that's when I started having pain and problems, and it started to progress. And 2011 was when I had my first rheumatology appointment, because my family doctor was like, okay, I thought it was an infection in your knee. It's not an infection now. Now it looks like it's rheumatism. Let's get you going. And that first rheumatologist really didn't take things seriously. Okay, like, here's a couple of pamphlets. You might have. This, this or this.
Kathy Chester
Right, right.
Jen
And I saw him for a year before I. Okay, I'm done. I'm firing you. By someone else.
Kathy Chester
Yeah.
Jen
And that very first appointment.
Kathy Chester
And that, John, is so empowering, because a lot of us, especially, are newly diagnosed. People don't realize we can fire our doctors.
Jen
Yes.
Kathy Chester
We have the power to do that. Right.
Jen
It's okay to do it, because sometimes that person's not the right fit for you, or they're not taking you seriously, or they're not listening. Maybe they're not doing the right tests. I don't know.
Podcast Sponsor/Announcer
Right.
Jen
But for me, it. It was like he Never wanted to move forward with giving me the actual diagnosis and never explained things well to me.
Kathy Chester
Yeah.
Jen
And I shouldn't have to go to Dr. Google every day, right?
Kathy Chester
Exactly. Exactly. Totally get that.
Jen
That first appointment with the new rheumatologist, I walked in and he's like, okay, I've looked at your blood work. I've looked at your. Your scans, everything. And he's like, yeah, I think it's safe to say you have rheumatoid arth.
Kathy Chester
Wow.
Jen
You're zero negative. But this is what you have.
Kathy Chester
Yeah, I love that. Yeah, same. And I hated that when doctors were like, I finally found mine as well at Michigan University. And it was like, I loved her. I loved that she was. You know, because everybody would say. The other rheumatologist would say, well, you have multiple sclerosis as well, so, you know, there's not really medication we can give you. So it was like, all right, bye. Like, good luck. And so she really dug into finding one that would work the best for both. The both of those. So it's like, when you find the right one, you're just like, yes. So good for you that you did find one that would work with you and really, like, understand this is what you have. And then you go from there. So now that you had her and probably on the right medication, did that. Do you feel like that that helped a lot with your body?
Jen
So it took a while. It really did. So we started with a biologic, because automatically they were like, what you're doing is not enough.
Kathy Chester
Okay.
Jen
And by then, I was on methotrexate and had been for a while, but they were like, this is not enough. So they put me on Orencia. And even that. They watched that go for a few months. No, this doesn't seem like the one for you. And that's when they put me on remicade, which is a tnf.
Kathy Chester
Okay.
Podcast Sponsor/Announcer
Yeah.
Jen
And I was doing really well. I was like, oh, yeah, I'm in medical remission. I can do the things. Yeah, I can do 5Ks again. I feel like.
Podcast Sponsor/Announcer
Right, right.
Jen
And then I started to get these sores, and I didn't know what was going on. And I went to urgent care because my husband looked at my leg, and he's like, that's not. That's not right. That's not good. You need to go get that checked out.
Kathy Chester
Yeah.
Jen
Went to urgent care. They thought I had a skin infection that they were thinking I got it from the gym. Okay.
Kathy Chester
And.
Jen
And so I was like, okay, whatever. Give me whatever you think I need to do. And so, you know, I've had the.
Kathy Chester
Craziest of things come on the podcast with the craziest things people have said. I'm just like, what?
Podcast Sponsor/Announcer
What did they say to you?
Jen
I know, right? And so, you know, listen, because there's professional.
Kathy Chester
Right.
Jen
So I go home and I'm doing all the things, and. And now it's getting worse. Now it's on both legs. Right? Now it's starting to get on my arm. Okay, what's going on? Go to my rheumatologist. It's time for my next infusion. And I was like, okay, so this is what's going on. Am I still okay to do my infusion today?
Kathy Chester
My goodness.
Jen
She took one look at it, and she said, oh, this is not a skin infection. I'll be right back.
Kathy Chester
What?
Jen
She left the room to go get the other rheumatologist in the office.
Podcast Sponsor/Announcer
Okay.
Jen
Apparently what had happened was so rare that she thought, okay, let's get a second opinion. Third opinion. They're going to want to see this.
Kathy Chester
Yeah.
Jen
Excuse me. As soon as they looked at me, they were like, you're. You're allergic to your TNF inhibitor. This is pustular psoriasis. It's a 1.1percent chance that you can get. Oh, God.
Kathy Chester
And now how painful is that?
Jen
Picture, as my PCP said, a burn from the inside out.
Kathy Chester
Oh, geez. So is it painful and itchy?
Jen
It is painful and itchy, but you. You feel the pain deep down in there. And that's why he. He described it as being a burn victim from the inside out.
Kathy Chester
Yeah.
Jen
And my skin started to look like.
Kathy Chester
I'm starting to, like, rub my lips.
Jen
I know, I know. And as it. As it spread, it got on my scalp, in my ears. Bra line.
Kathy Chester
I still kind of like, shingles would spread.
Podcast Sponsor/Announcer
Right.
Jen
And with the scarring, I still bras. Because it feels weird on the part.
Podcast Sponsor/Announcer
Oh, sure.
Jen
And. But yeah, my skin would start to peel like an onion, but it was red and it was oozing pus.
Kathy Chester
Oh, gosh.
Jen
If people want to really gross out, look it up. But I don't recommend it. It's.
Kathy Chester
Yeah. Oh, I'm just so. My heart just hurts for you so bad that you had to go through that.
Jen
Thank you.
Podcast Sponsor/Announcer
Oh, I hate that.
Kathy Chester
I hate these dumb things. I hate these diseases. Damn it. I want them gone. Oh, I hate that.
Jen
But, you know, I look at it this way, the things that we go through.
Podcast Sponsor/Announcer
Yeah.
Jen
Who we are today.
Podcast Sponsor/Announcer
Oh, for sure.
Kathy Chester
We Definitely are.
Podcast Sponsor/Announcer
We are bad bitches.
Kathy Chester
That's who we are.
Jen
Yes. Yes, we are. And as you know, as much as I hate this crap.
Kathy Chester
Yeah.
Jen
I wouldn't take it away and I wouldn't change it just because I think it's made me a better person.
Kathy Chester
Agree, John. That is so wholeheartedly. I know. Empathetic, which I know our country doesn't like, but I think that that is so true. Like, it has made me who I am. And I don't know. I mean, I've had it so long, these things, but I think it is. I can't imagine not having it. I think it made me a better mom. I think it had done a lot to me. And, you know, do I like waking up every day and thinking, okay, this medication, this. Okay, how does my body feel today? Can I do this or this?
Podcast Sponsor/Announcer
No.
Kathy Chester
But the point is, is will we be doing this today? Would we be spreading awareness and help today? And I love what I get to do, and I can't imagine doing other things. And I'm sure you feel the same. So I love that I. I love.
Jen
That I. I look at people differently now.
Podcast Sponsor/Announcer
Yeah.
Jen
If I see someone walking slow in front of me, even if I'm able to walk fast that day, I'm not. I'm no longer sitting there rolling my eyes, being like, right.
Kathy Chester
Could you move? Right. Exactly.
Jen
Now I'm kind of looking at their. Their gait, I'm looking at their feet. How are they walking?
Kathy Chester
Right.
Jen
And I'm trying to figure it out.
Kathy Chester
Yeah. So here's my question for you. So as someone that has multiple issues and multiple chronic illnesses, what would you say is something that. That you've got something that you want to share that people wouldn't know, that people wouldn't even think about?
Jen
Like a tip or a thought.
Kathy Chester
Yeah. Or thought. Or just having it. That an illness that might, maybe would surprise people.
Jen
I mean, I think it might surprise people that we still have our good days and.
Kathy Chester
Yeah.
Jen
Because, you know, you get people that they're like, well, you were fine yesterday. Why are you not fighting today? I hate that. I hate when people say that. I felt that myself. We don't know. We don't know what our rights, you know, exactly. Think I feel completely normal. What I consider normal today, and I can do all kinds of activity, and then for some reason tomorrow I'm laid out. Maybe I didn't realize I was overdoing it.
Kathy Chester
Right.
Jen
But each day is going to be different.
Podcast Sponsor/Announcer
Yeah.
Jen
And just because maybe I had a bad day today, doesn't mean I'm not going to have a better day tomorrow for sure.
Kathy Chester
Or like oftentimes I think we don't pay enough attention to the weather. Like I know here today it's a beautiful day, tomorrow it's going to be 95. So our body has to adjust to that and it takes time. And so today may be a great day, but the next day because of weather or whatever, it, it may be not such a great day. And so I think sometimes people don't understand that that can be something that people don't understand. I think that's one most definitely.
Jen
I don't think I understood it. You know, we'd hear people joke around about their arthritis and knowing when the weather is going to change, but yeah, I definitely believe it. We can tell. We can tell when something's brewing. But for sure. I guess one piece of advice I'd want to share with people.
Kathy Chester
Yeah.
Jen
Is don't get stuck there.
Kathy Chester
Yeah.
Jen
I understand wanting to mourn your life and grieving.
Kathy Chester
Right.
Jen
For what you had expected for your life to look like.
Kathy Chester
Right.
Jen
But whatever you do, put a time.
Kathy Chester
Limit on it for sure.
Jen
Because if we don't put a time limit on it, we're gonna grieve every day, all day.
Podcast Sponsor/Announcer
Yeah.
Jen
And you miss out on so many beautiful things in your life.
Kathy Chester
I love that. I love how you said that I always called the black hole. And it's important to grieve. And do you agree? I always tell like especially in the support group that it's not just a one and done but as we grow and as the disease, diseases as they challenge us in that it's, it's a process of grieving what we lose as we get older and, and you know, grieve it but as you said, don't stay there because we really rob ourselves so much when we do that. And so I think that that's the important part about finding those support groups and finding those people within that that understand and that can, can give us that. Because even the people that love us the most, even whether it's a spouse or they want to understand, but they can't understand like people like our spoonies and people. So what gave you the idea for Spoonies?
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Kathy Chester
Go ahead and grab it.
Jen
Well, somewhere along the way, I'd heard about the spoon theory, and we kept talking about it in support group. And so what ended up happening? I'm not explaining this well.
Kathy Chester
You're good.
Jen
What ended up happening was this group of us that. That had been in support group with Chelsea. One day, I was like, hey, let's do a spoon toss. Yeah, I think it'd be fun to start creating these videos where we're tossing spoons of energy to each other. And so it just started with that. And every few months, we would do another spoon toss. We did a holiday one for Christmas where we were all dressed up in Christmas stuff, doing it by our trees. Some people would grab a spoon out of their tree or out of a stocking.
Kathy Chester
I love that.
Jen
Just tried to really have some fun with it and joke around about what our lives were we're dealing with. And so just doing all of that is what really sparked my thought process on calling my Spoonie sisters. These are my sisters I'm having fun with. We do these spoon tosses, we talk about the spoon theory. So we're gonna be my Spoonie sisters.
Kathy Chester
Yeah, I love that.
Jen
And as time progressed, I was like, okay, I'm kind of leaving out the guys. I feel kind of bad. And so I. I have tweaked it. So, like, last season, I brought on the co hosts. And now more of when a person comes on the podcast, they're talking to their Spoonie sisters.
Podcast Sponsor/Announcer
Okay.
Jen
But we do have a co host that's a man that comes on.
Kathy Chester
Okay.
Jen
Guest.
Kathy Chester
Yeah.
Jen
A lot of fun, too. So I don't know. The name has kind of been tricky because I. I don't want to leave people out, but.
Kathy Chester
Yeah, yeah, yeah, true. I didn't know that. So I was like, so you got him now in the support group. Is that for everybody or just for women?
Jen
Yeah, yeah, that's for anybody. And okay, if they were to go to my Instagram stories, there is a link in there to sign up for support group. Once you sign up, you get email reminders, and I like that, you know, there might be. We we used to try to do it the first Monday afternoon month.
Kathy Chester
Yeah.
Jen
We're getting really tricky for me.
Kathy Chester
Yeah.
Jen
And so I was like, you know, if you guys are up to it, I'm going to switch it to Tuesday. There's more people that have wanted to come, but they can't come on Monday. We're going to switch it to Tuesday. We're going to do 9 in the morning.
Kathy Chester
Yeah.
Jen
Or even 9:30 in the morning.
Kathy Chester
Yeah.
Jen
Everyone's like, okay, yeah, yeah, I think I can make that work. And so that's what I've done. Except it's no longer the first one of the month now. It's whatever particular week I think is going to work well.
Kathy Chester
Okay.
Jen
Yeah. And my hope is eventually to have two Tuesdays a month.
Kathy Chester
That's okay.
Jen
But anyway, good for you. You get signed up, you'll get the link to come in. You'll get the email reminders to join.
Kathy Chester
I like that.
Jen
And we have a lot of fun, I think.
Kathy Chester
Yeah. I love that. That's a great idea. So what is. What would you say is one of your biggest dreams or hopes with this group or creating in anything in the. Swing sisters are just for you. What is like, let's say, two years that you've got a goal that you really are looking forward to?
Jen
I mean, my end goal is just to continue helping people that are new to that. And of course, I always welcome the people that aren't because the more voice.
Kathy Chester
Yeah.
Jen
Help support the newly diagnosed, the better, for sure. But my, my, my biggest goal has always been help the people that are in the beginning stages. Because we were scared to death. We didn't understand.
Podcast Sponsor/Announcer
Oh, gosh.
Kathy Chester
Yeah.
Jen
We didn't understand half the terms. I mean, it's a scary place to be. And so to have. For sure, you can ask the questions. When they find out they're. They're going to be trying a new medication, they can come.
Kathy Chester
Yes.
Jen
Okay. What are side effects? Okay, I'm having this side effect.
Podcast Sponsor/Announcer
Yeah.
Jen
What did you do to try to help combat that?
Podcast Sponsor/Announcer
Right.
Jen
Methotrexate is a great example. It's a tough one. People like, I can't get this nausea under control. What has helped you?
Kathy Chester
Yeah, I love that we do like a, like, like tips and hacks and I love that, you know, where, because there's things like, where people who've had it for a long time have that wisdom and then having like the younger diet, like, like youngly younger diagnosed people who are newly diagnosed, I should say, you know, they, I think they Offer so much because they give the people who've been diagnosed for so long kind of that fight. It's like, oh, yeah, this is why I'm fighting. And so I think that combination is really great to have. So I love that you have that as well. I'm reading through since my printer didn't work. So you guys have to excuse my constantly looking and trying to read. I love. Yeah. So share with me, like, some of the things that are. Like, some of the moments that are just really difficult because I think sometimes we don't like to share them. That you just. Sometimes just feel like I. I want to give up. And what. What about that keeps you going?
Jen
There's been a few times, and I can think of a few years back, before I even started the podcast. I remember leaning on that original groups so hard because I was going back on methotrexate again.
Podcast Sponsor/Announcer
Okay.
Jen
And I hadn't been on it in a long time, and it was hitting me so bad.
Kathy Chester
Yeah.
Jen
And so being able to go and say, okay, ladies, what can you tell me what works for you? What am I missing here? And just getting. Because I felt like I was pregnant and nauseous every day is. And didn't want to eat, but I knew I needed to eat, and if I didn't eat, it made it worse. It was. Right. It's horrible. And I was like, okay, how did I tolerate this so well ten years prior?
Kathy Chester
Right, right, right. Our bodies change. Things change. Like, what's happening now?
Jen
Yeah. So that was really a dark time for me. And just having them there to. To listen and give me the pep talk. That was wonderful.
Kathy Chester
Yeah.
Jen
And I. I think that's probably all of my examples are dark times of where maybe I'm being more symptomatic. And I'm like, okay, can I cry for a little while, guys? Can I vent about what's going on? And those are the times where it's like, why do I even do what I do?
Kathy Chester
Yeah.
Jen
Am I even helping people if I can't help myself?
Kathy Chester
Yeah.
Jen
But, man, we can do both.
Kathy Chester
Absolutely. Absolutely. And that. I think it's in our head. And that's that my brain, my cognitive, just about that. What is it called that. That where we think we're being falsely. We shouldn't be doing it. That syndrome that.
Jen
I know exactly what you mean. My brain dog at its finest for both of us.
Kathy Chester
Right. I'm like, oh, it's called impost. Impostor syndrome.
Podcast Sponsor/Announcer
Yeah.
Kathy Chester
So I think that is something we. We all struggle with when we're doing something. It's like, do I even have the right to do this? Do I even know anything? And it's like. And then you do it, and it's like, why does this get me every time? You know, why is this. And it's just, you know, something that we struggle with. And I think we just got to shove that voice away and say, you know, you don't. You don't own me. You don't get to be in my head. Leave.
Jen
Exactly. And at the end of the day, everyone else is probably feeling the same.
Kathy Chester
Oh, for sure. Yeah.
Jen
Definitely not share with them that we feel this crappy because, yeah, that's going to help them feel less alone. At the end of the day, we all want to feel less alone. And so people showing us the real, the raw, the nest, the nasty stuff, the negative.
Kathy Chester
Yeah.
Jen
That's what fuels us to keep going. Because we know we're not the only one.
Kathy Chester
Oh, yeah. Because that's the worst. Because we all feel that. And we know with these chronic illnesses that they. They bring on such anxiety and such a depression, and to hide that or to always look glamorous in shots and stuff is like, come on, really? You look this good all the time. And I'm like. And I think that's why I just like my ponytail on top of my head with no makeup a lot. So they can see. No, this is what I do. I train all day. So most of the time, if you want me to do something real quick, my ponytail will be on my head and I won't have makeup on. So I think it's important because that's who we are most of the day.
Jen
Oh, yeah. Oh, yeah.
Kathy Chester
I think it's important to look that way. And I loved your video the other day. I love those. When you're tossing things or. That was really funny. Was that on TikTok?
Jen
Oh, gosh. Which one are you thinking of?
Kathy Chester
The one where you were fake, like, acting like you had this symptom. And they didn't really do anything. I posted on my. On my story.
Jen
Oh, okay. What did I have in my hand?
Kathy Chester
And then she. Like a stuffed animal or something. And then she's.
Jen
Yes, yes, yes. We had giant microbes.
Kathy Chester
Okay, okay. Oh, that's. Okay. So that was. Was that on TikTok?
Jen
I think it's on both of them.
Podcast Sponsor/Announcer
Okay.
Kathy Chester
I like that one. I thought that was really funny.
Jen
It was a lot of fun. And I don't know if anyone ever wants to collaborate. Please hit me up. I love.
Kathy Chester
Oh, my Gosh I would love to do that with you.
Jen
I. I love bringing some humor in there. I know some people have a hard time with humor, but if we can't laugh at ourselves.
Kathy Chester
Oh, absolutely.
Jen
Oh, my gosh.
Kathy Chester
That's.
Jen
Seriously.
Kathy Chester
No, I'm like, I'm not a serious person, so I'd have a really hard time. But I just think, like, we have to. Everything to me is. Has got to have fun to it and funny stuff. Because, my gosh, I mean, you know what I'm going through right now. So if I can't laugh and I can't have, like, humor with stuff, there's no reason you wouldn't want me on a podcast. You would not want me leading your support group. You'd be like, girlfriend, take a year off. So, I mean, we gotta laugh at stuff now. My question to you is, did you ever imagine that this in your community with the spoonie scissors would ever be this big?
Jen
No. No.
Kathy Chester
Yeah. That.
Jen
I honestly, when I started it, I was like, be lucky to make this a year.
Kathy Chester
Yeah.
Jen
And. And before I knew it, I just kept having people reach out to me and be like, oh, my gosh, you've helped me so much. Thank you so for what you do. And. And every time that I'm like, am I even helping people? What am I doing? Every time I have those thoughts, I get a message from someone. It could be someone thanking me, or it could be someone saying, hey, you know, I now have psoriasis. What is the best, Right? And. And just the fact that they appreciate what I'm doing, but like, oh, my gosh, she's the one I need to talk to.
Kathy Chester
I'm like, exactly.
Jen
I'm doing something right. And if I stop, how many people are going to be upset with me?
Kathy Chester
I mean, I can think about you sharing this now. And the people that I, you know, that I work with, that my clients are going to be like, oh, my gosh, I need to get a hold of her. And I love that. And you and I talked about this in the beginning that I think is so important is that we both have a heart to collaborate and. Which made me love you immediately, because I've done podcasts where I've had people on and they never have me on, and they've taken my ideas or my people, and they're just like, bye, see ya. And it's this competition. I'm like, how can you compete for sick people? Like, there's so many of us, and this. We're supposed to be a community that those who can Help, Help. And we work together. And so to me, competing is. Is so selfish. And it really brings out the immaturity of a person.
Jen
It's like experiencing mean girls.
Kathy Chester
Exactly, Exactly.
Jen
At the end of the day, it's like there's room for all of us.
Kathy Chester
Right.
Jen
And be supporting each other and cheering each other on.
Kathy Chester
Oh, 100 like, we talked about, like, if I knew someone that I would think like, oh, this would be a great person for you to know, for you to be on the podcast or someone that had some of your stuff, I'd be like, you've got to know her. You got to be in that support group. I can't imagine, like, no, no, you gotta stay in mine. It's just like, makes no sense. Exactly.
Jen
And as soon as I meet and interview people, I'm like, oh, I know who you need to talk to. And I'm like, yeah, if you want to do more podcasts, you need to talk to X.
Kathy Chester
Right.
Jen
And oh, don't forget this one over here.
Kathy Chester
Right.
Jen
Because yeah, it should be.
Kathy Chester
Right.
Podcast Sponsor/Announcer
Absolutely.
Kathy Chester
100 and so, yeah, does it a little bit differently. Right.
Jen
100 A different angle of the story that's coming out.
Kathy Chester
Right.
Jen
Avenues. And I, and I, we're not all asking the same questions.
Kathy Chester
Sure. For. Absolutely not. And so for you doing this now, you've got like a different co. You got a co host now. And so when they come on to do the. To be on the support group and stuff with you, then they become. You do like a monthly newsletter or monthly, like email thing. And then like, I just started doing a newsletter that I have help with. So I just kind of asked some of the women, would you like to help me with some of these things? And so one of them has been really great at starting this newsletter. And so just trying to, like, I'm just there now trying to kind of get the community going and trying to make this again after we kind of had like a big loss of women and. Because you know, to me that the same as you, like, I want this community moving and kind of growing because I love that my favorite thing too is I'm sure you feel this is when they can talk to each other and you know that they've helped each other. That's like, yes. So they've made friends or when they. It's like they go somewhere and then they've met up together. It's like, that is such a community. And so that feels good and I'm sure for you as well. So. Yeah. So I want to know if you Were to meet someone newly diagnosed with any of our fun things, what would be the one thing that you'd want to share with them?
Jen
I would tell them not to give up and that you are not alone. We are all here to support you. There's a huge community of us. We are going to pick you up, we are going to links with you, even if it's virtually. We're going to link arms with you and we're going to help you through this.
Kathy Chester
Yeah.
Jen
Ask questions, lean on us as much as you need to, but you are not alone and you are going to get through this. Maybe not necessarily in one piece, but you were going to get through this.
Kathy Chester
Yeah. Yeah. I love that because I think that that's. That that's a big fear. And what would you say to them about, like, doctors and stuff like that? Would you tell them, like, a specific. Because I know in our support group, sometimes we have a. We have trouble with them wanting to tell them, oh, you have to go to my doctor.
Jen
Yeah, I, you know, and I've heard people do that before, but.
Kathy Chester
Yeah.
Jen
I think the biggest thing that I would say, and I say this to everyone all the time, is it's okay to fire your doctor. I think made a sticker in a minute.
Kathy Chester
Yeah, I know. I wanted to do this because you and I talked about that it is okay.
Jen
It is okay to fire your doctor. And I wish I would have known that sooner. And so the one thing I want people to. To take away when I meet them is it's okay.
Kathy Chester
Yeah.
Jen
It sucks to start over. It.
Kathy Chester
Yeah.
Jen
One. I get that.
Kathy Chester
Yeah.
Jen
But your body might thank you and your mind's gonna thank you.
Kathy Chester
Yeah. For sure.
Jen
This person might not be doing you any. Any good. Any service.
Kathy Chester
Yeah.
Jen
They might be missing something.
Kathy Chester
Right.
Jen
Overlooking something. Or they might be lazy.
Kathy Chester
Yeah. 100%. And I think if you get a nervousness that you're going to see that doctor that's right there. Like, that's a red light. If your stomach is all upset because you're seeing that person, that's. That's not good at all. I think that we have to really. And just like, just knowing about you, I wanted to know, what have you done? Like, obviously, what you're doing with the. With your Sweeney Sisters and this support group, you're. When did you start advocating? Once you got this, how long did it. Did you feel like it took?
Podcast Sponsor/Announcer
Because you.
Kathy Chester
I mean, we talked about you have to grieve for a bit, and we talked about not staying in that place because that's gets you in a bad area.
Jen
Yeah. Yeah. I don't think it was until 2021 where I started.
Kathy Chester
Okay.
Jen
And talking about it and that's when I started to meet some of these. These girls in the original group and it made it feel okay to do.
Kathy Chester
Yeah.
Jen
I think that was around the time where people finally talked about it on social media.
Kathy Chester
Yeah.
Jen
And it's like, oh, wow. You know, it's okay for us to talk about this. We don't have to fight it. Just because our friends and family don't get it or people are right in our personal lives does not mean that we have to. Yeah. Finally was comfortable saying, okay, I'm going to post something. It's really. But I'm going to post something and I'm going to tell you that you're not alone and that I'm going through this too.
Kathy Chester
Right. I love that.
Jen
That was scary. It's always scary the first time.
Podcast Sponsor/Announcer
Oh gosh.
Kathy Chester
Yeah. Yeah. I was like I have no idea what I'm doing or saying. I hope this means something to somebody. But yeah, I agree. That is. Well, I'm really glad that you started because I've loved today. I want to work with you more. So we'll do something really silly. I'll do that with you 100.
Jen
Absolutely. Absolutely. And you are definitely coming on with. With. Thank you. Because they're gonna love you.
Kathy Chester
I'll be very excited and we'll help each other with our support group. We'll go on each other's with something fun and no, I can already. My brain's already thinking about things.
Jen
There's a million fun things we can do.
Kathy Chester
Oh for sure. And so looking it's been such a pleasure to have you on Jen and I've wanted to do this for so long. So I'm so excited that we got. I wanna. I wanna honor. I know you have a. You've got another commitment. But it has just been such an honor. I just have been so excited to have you on. I'm looking forward to next time we collaborate and them seeing like oh, they're doing something again. So I love. Oh, you've been great. I've got an idea to steal just this will not steal the spoons. That's not anything new. But still I'm always amazed that how many people don't know that the spoon theory. So I love that you do that. I love your heart for collaborating. I love your heart what you're doing with the groups. The support groups. And thank you for being on today.
Jen
Thank you so much.
Kathy Chester
Absolutely. So guys, I hope you enjoyed today. Make sure that and I'll have all of your links for social media at the bottom of the podcast so you'll be able to get in touch with Jen if you'd like and get to know more about her. And so those again will be on the bottom of the show Notes and Jen, thank you again. And till next time, guys on Move or to Lose It. We can't wait to have you back for our next guest. Have a great day, enjoy the weather wherever you are, and we'll talk to you soon. Bye guys. Thank you so much for joining me for another episode of the Move it or Lose it podcast. It would mean the world to me if you subscribed and left a review. Remember, you can find me on Apple, Spotify, Stitcher and YouTube. New episodes of the Move it or.
Podcast Sponsor/Announcer
Lose it podcast air every other Wednesday. If you have any suggestions for future.
Kathy Chester
Guests or topics, please visit my website@www.msdisrupted.com.
Podcast Sponsor/Announcer
Until next time, next.
Guest: Jen Weaver from My Spoonie Sisters
Host: Kathy Chester
Air Date: July 30, 2025
In this heartfelt episode, host Kathy Chester welcomes Jen Weaver, founder of the “My Spoonie Sisters” community and podcast, for an honest, funny, and moving conversation about living with chronic illness, building supportive communities, and the ups and downs of both advocacy and personal health. Together, they explore how chronic illness shapes identity, the importance of finding your people, and the power of sharing real—sometimes messy—experiences.
| Timestamp | Segment/Topic | |:-------------:|:--------------------------------------------------------| | 01:19–03:06 | Jen’s first diagnosis, inspiration for Spoonie Sisters | | 03:11–03:29 | Talking about starting and fears of a new podcast | | 05:19–05:47 | Insights from interviewing doctors as a patient advocate | | 09:31–09:59 | Evolution of the support group to all chronic illnesses | | 14:48–15:33 | Firing a doctor and the importance of patient agency | | 16:43–19:41 | Jen’s medication journey and rare side effects | | 20:05–21:12 | Reflection on growth, empathy, and changed perspective | | 22:03–23:43 | Invisible symptoms and unpredictability of chronic illness| | 23:32–23:53 | On grieving and moving forward—setting a time limit | | 25:59–26:44 | Origin of the Spoon Theory activities + community name | | 29:11–30:58 | Goals for helping newly diagnosed; wisdom sharing | | 31:18–32:15 | Honest discussion of dark times; power of support | | 32:16–33:14 | Impostor syndrome in advocacy work | | 33:30–34:19 | Authenticity in managing image/fatigue on social media | | 34:54–35:04 | The necessity of humor | | 37:25–37:32 | Collaboration over competition among advocates | | 40:13–41:15 | Reassuring the newly diagnosed: you are not alone | | 41:00–41:09 | The mantra: It’s okay to fire your doctor |
The episode is open, relatable, occasionally irreverent, and marked by both candor and humor. The “sisterhood” dynamic shines through in mutual support, authenticity, and shared laughter—even about difficult topics.
Jen’s “My Spoonie Sisters” community is open to all chronic illness warriors; support group info is available through her Instagram Stories. Collaboration is encouraged; both Kathy and Jen warmly invite listeners to join and grow together!