Episode 112 - Family Matters: Navigating MS Together

Today I'm delighted to present a very special guest - my daughter Kaitlyn, plus my new granddaughter, Liliana. Together we delve into the topic of living with multiple sclerosis as a family, reflecting on the challenges and experiences we faced in the 90s and early 2000s.

Kaitlyn shared her memories of my MS diagnosis during her childhood, highlighting the confusion she felt. We discussed the difficulty of explaining an invisible illness to others, especially when symptoms fluctuate.

Kaitlyn also emphasized the value of open and honest communication within families when dealing with chronic illnesses. Sharing experiences and answering questions can help children understand and normalize the situation.

By sharing our experiences and supporting each other, we hope to inspire others to find hope and resilience in their own journeys with chronic illness.

DISCLAIMER
The information in this podcast is for informational purposes only and is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare providers with any questions you may have regarding a medical condition or treatment.

Links and resources:
Sign up for the 10 Weeks to Disrupt MS Program

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Find out more about the DMAT Fitness Training program

You can find Kathy Chester at:
msdisrupted@gmail.com
disruptfitnessgym@gmail.com
moveitorloseit109@gmail.com

Connect with @msdisrupted on Instagram, Facebook, TikTok

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Transcript

Kathy:
Hello, I'm your host, Kathy Chester, and welcome to the Move It or Lose It podcast, a podcast about all 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 one on TV. So please consult with 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 is a special one. So I'm doing one with my daughter today and my new granddaughter, Liliana. So she's going to pop in and out and almost fell. So hello, Liliana. Are you ready to do your first podcast with Gigi and Mama? Did you know what our topic's going to be, Liliana? No, she doesn't know. So it's a surprise to her as well. So today I've got my daughter, Kaitlyn. Hello. We're talking about MS. I wanted Kaitlyn on with me because let's face it, the boys are not good about talking about anything. I would agree. So we decided it would just be the girls' day. So we're going to kind of go back in the time of the 90s, early 2000s, and what it was like for mom to have MS back then.


Kaitlyn:
I was in the 90s. The 90s, late 90s.


Kathy:
I didn't remember. No, you didn't remember much then, but talk to our listeners. The first memory you have about me being diagnosed.


Kaitlyn:
I mean, I was I was in middle school, I feel like. That's when you remember, really? I'm in elementary school. I was. Yeah. I think through a point in your life, those middle school and elementary school years kind of like fade into one anyway. So I don't really know to be exact, but. But that makes sense.


Kathy:
I remember not knowing what the heck it was. Right. That makes sense. So even if you would have like.


Kaitlyn:
Like explaining it to people, I felt stupid. Yeah, me too. I didn't know. My mom had something like cancer, but it's not cancer, but it's worse than cancer, but I didn't know.


Kathy:
Yeah. It was hard then because like we talked about a little bit ago, you know, we couldn't wait to get the next edition of the MS Society newsletter, but still we didn't have a lot to go by. I didn't know what to tell you. I didn't want to tell you that I was going to get worse because I honestly didn't know. And then when I was on Dysabry, We really did think that I was going to be better and that there was nothing to worry about.


Kaitlyn:
Sometimes it could be OK. Right. We're worried. And that's that's what made me feel stupid talking to people about, I guess, stupid if that's the word used, because it would be like my mom's really sick and then, no, she's not. And I know she has this disease. I don't know what it is. And it was just confusing.


Kathy:
Right. One of the things I think that a lot of people can understand, and especially as a kid, which I think is so helpful and why I wanted you to do this, is I think about all the kids that have parents that have MS and they're confused like you were. Talk a little bit about what you felt when kids or parents at school would come up to you and say, oh, you don't have to worry, but I have an aunt or uncle. They died from this horrible disease, but your mom's great. She won't die.


Kaitlyn:
I don't know that I can't see it. My awful memory of my childhood didn't help either, but I don't know if it happened more so with the boys or me, but I definitely remember feeling stupid because I didn't know how to explain it. And I remember getting angry because people didn't understand. Not that, I guess as a kid, you did want attention, not attention from it, but when you're- The validation. Yeah, yeah. And so you're like, why is no one like, oh, I'm sorry. I'm so stressed out because my family is out. It's just it's hard to explain.


Kathy:
Well, especially I would think when I was on chemo. It was a lower dose, but you're coming home, mom's on the couch. Or you would look good.


Kaitlyn:
Yeah. And that would confuse me and people. Yeah. You didn't look sick. Well, the invisible disease, you nailed it.


Kathy:
So it's in the book. You look so good. That's what everybody tells us. And so it's that's kind of a weird thing because it's like, do we want to look sick? Not really. I mean, do you want to go around looking like, oh, I'm a sick person? So it's like this confusing thing, because you don't want to look sick, but you also want people to understand, like, hey, you know what? I just don't feel like I could do this today. Right, Liliana? Sometimes we just can't do things. And it was hard because the scariest part for me with you guys, especially, was when we planned to go on a vacation, camping, and I went to Florida, to Disney World, and I inside would get so nerved up because I would get so excited for you guys to go do something that I didn't know about.


Kaitlyn:
No, I would never tell you. That's why it made it hard.


Kathy:
Right. And you'll understand as a mom. now because you want to do so many fun things. Yeah. But my nervousness was what if we get there and my body just is like, yeah, you're not doing it.


Kaitlyn:
I guess in a sense, you can relate it in a very small sliver to being pregnant, like a very terrible pregnancy. Yeah. So because it's like you could feel great one second and then the next you have to fake it because you don't look it right whenever it is. Yeah, very true. Because I think for other people to understand, you have to relate. And if you don't give an example of something someone's going through, then they're like, I don't know.


Kathy:
For sure. I think that that's really good. And I think a lot of people, especially if you haven't dealt with an illness, you don't understand. And with MS, like you said, an example, you've watched me now that you've been with me more and more lately. You've watched my legs, like I'm like crawling up the stairs and the next day I'm like, wanna work out? Let's go on a treadmill. And it's like one day my legs are working, one day they're not. So for other people who don't know about MS, it's really hard. to describe. It's confusing. It leads people to think, is this real or not? And that's frustrating for us because we're like, you don't see everything inside and how much pain we're in. So it's like unless you are in a chair or you're really debilitated, people don't feel like you have something. Right. And so it is frustrating. And I'm sure for you guys as kids, it was so confusing to explain. and probably felt like, you don't understand, my mom is sick. And she does a lot when people would act like, I don't think she's sick. And I'm sure like growing up and still today, it is hard.


Kaitlyn:
Yeah, it's just it's a lot to even knowing everything. There's so much I feel like goes into multiple sclerosis that it's like, what do you say? Yes, everyone's so different.


Kathy:
One of the things I just say to like, when I see people's like eyes kind of glaze over and they don't get it, is it's a disease that affects my entire body. So it can touch anything. I've lost the word. It takes over cognitively when it wants, but it can affect my body at any point in time. It can do what it wants. And you know this forever. My biggest defense for this is exercise. Yeah. And that was something that I felt, even though you knew that Aunt Christine had it, but living in Canada at that time, it took her a year to get this MRI. Yeah. By the time she realized what she had, she was literally, unfortunately.


Kaitlyn:
She wasn't that healthy and on top of that, she wasn't They didn't know that much.


Kathy:
No, not at all. They didn't know very much. And in Canada, it was so hard to get tests and to get the medications she needed. And the medicaid, there were only two medications at the time. So we're talking like early 90s. So that was really tough. But I just really wanted to do this with you and talk about some of the things as a family and going camping and remember like trying to get me out of the sun. and all of the like the umbrellas and stuff and like had me run in the water when I got overheated because we weren't always sure what to do. But it was like, hey, we can't get overheated. So I had to jump in the water and do stuff. And then it was always.


Kaitlyn:
But again, there's a lot, like I said, that I didn't see necessarily because you did hide it so well or because you weren't even trying to hide it. You didn't look. No, I did. I did. I mean, you are the most active person I know, so I'm sure that that plays.


Kathy:
Maybe, but that's why you're so active. In part, but maybe that's why you're a little, a little one.


Kaitlyn:
So I've seen the side of of what is so beneficial to staying active. I've seen both sides. Yeah.


Kathy:
And you've seen me overdo it. If we're being honest to our viewers, which just started. Yeah, you see me overdo it and that's all I'm tired.


Kaitlyn:
Your honesty just started with everything with like being able to be like, hey, viewers, my daughter's like ragging on me right now.


Kathy:
I know I just realized. No, but I've been more honest.


Kaitlyn:
No, it's good because it's showing people that it's it's easy for you to say it on here. But maybe it takes a while.


Kathy:
Well, it is harder for me to tell you to be honest with you about how bad I'm doing.


Kaitlyn:
Well, because I don't want you to know that. But you don't want to realize it yourself. No. So for other people to hear that, you know, you are giving it out because you're going through it is different.


Kathy:
Yeah, I mean, to other people, it's one thing, but to my daughter, I don't want you to know that I'm doing worse. But I also know that it's important that you know. And so you being here with me, it is important. It's important to know that our little Liliana is gone night night. She's my knight in a little Nike outfit. But I do love you so much. And I thought it was just so important that we talked about that because I do think about all the little kids that really don't understand what their parents are going through, whether it's mom or dad. And a lot of times I'm working with a dad who's afraid that they'll never be able to play catch with their kids. You know, you never saw me. I have been blessed to not be in a wheelchair.


Kaitlyn:
I definitely think the more honest you are with your kids, the better, because then they're not going to have those questions. They can explain to other people. It's normal to them. It's not embarrassing or it doesn't feel like you're pulling a victim card by getting attention. When you're younger and you're taught, I believe that It helps.


Kathy:
I agree 100%. And now there's no reason because there's so much out there now that we didn't have. Right. That you can really explain. And, you know, Julie Stein, if you didn't know, has written a beautiful book about sharing with your kids. And that wasn't even thought of back in the day when you were little. You hid it. You hid it from your employer. You hid it from your kids. And really, there was a fear, Kaitlyn. There was a fear that they could take your kids away. if you were too sick. So that was the big fear that we had that, you know, just literally fake it till you make it. Like, I got this and I can, and that was scary. It was, I mean, think about being disabled now. Like I know when I have my cane and it's really hot and I had to go in the store, I can't tell you how many people just cut me off, cut in front of me. No apologies. No, I'm sorry. And I think, man, like it's still, we're in 2024. and people don't get disabilities. So it's tricky.


Kaitlyn:
That's part of not looking the part, which is what you're saying, the invisibility that people probably go through is that people might not go out of your way or help you out. I mean, who knows these days what's going on. They might be your cane and part of your outfit.


Kathy:
Well, my cane is pretty cool. You don't know.


Kaitlyn:
And honestly, people are very oblivious nowadays. Everyone's in their own space.


Kathy:
Definitely. And that's one of the reasons I thought it was important to do this podcast, to bring light to different diseases, multiple sclerosis, but different things, but to bring the heart of it out too. This is something that we do together as a family. And there's so many things that go into it. there are times that I'm just too tired and Kaitlyn will have to help out with some dinner stuff. And then I feel like I can hold my little granddaughter. And so I might be on the couch holding her while Kaitlyn's helping with dinner and when my husband's helping with some other things. So with this disease, you do what you can do. And if you're in a chair and it might be just holding and sitting with your granddaughter, I think it's the most beautiful thing in the world. Or if you're able to go on some walks, Some of my favorite things I've been able to work out in the gym with my daughter and work out with my granddaughter. And I think she's going to be lifting weights. If you see my videos with her doing pushups, she's doing pretty amazing. But I think it's really important right now in a time where social media can either really be negative or positive. But to think of the positive parts of it, that we have the ability to share our diseases with our family and with the public. so that they understand that it's something in a healthy way that we can share. And I would say, Kaitlyn, if I had the knowledge, then it would be share with the questions that you asked me. You know, I wouldn't overshare. Yeah, you know, kind of like I think about the talk like the sex ed talk, you know, don't overshare. You're saying, yeah, that's because that's every kid's favorite thing to talk about with their parents. Yeah. But I would say definitely don't don't overshare. Just go with the questions they ask. And when they have more, they'll ask, but if they feel that they can trust what you're saying, then they'll ask you more. I remember the first time that things changed for the worst with my MS. I remember my oldest saying, you lied, you lied. Do you remember Dr. Rossman, when you guys had to get your, it was the beginning of us knowing that we could get flu shots and he gave you guys all flu shots. And I remember both saying, I never knew this was going to happen or I would never have done this. And it was just a way to keep you guys safe. But yeah, but also want me safe too. Yeah. And he was really good about sitting you guys down and trying to talk to you guys and explain what would happen. And obviously I miss him very much. Yeah, he was a wonderful neurologist.


Kaitlyn:
I remember that being like a warm night. I think it was because I got the juice and the graham crackers or whatever it was.


Kathy:
He's like, you know, I don't want the kids to go anywhere else to get it. So back then he was just a wonderful neurologist and he made sure all my kids got the flu shot there. so he could explain it and the nurses could do it. And it wasn't in some scary place, but the kids were still really mad either way. So we just really wanted to do this prompt to just to kind of show you as a family that we do go through this together. And sometimes it's really crazy. Sometimes I'm OK and we're just loving each other and watching a movie. And it's us. No one fights it alone. And I hope that this brings some hope and some joy to others. And Liliana is now completely asleep. So I'm going to go and snuggle with my daughter and my granddaughter. So I can't wait to see you guys back again and have a wonderful week and see you back at Move It or Lose It. And don't forget to hit like and subscribe. Talk to you guys soon. Well, thank you so much for joining us today on Move It or Lose It Podcast, where you can, again, find us wherever you like your podcasts, whether it's Apple, Spotify, and join us on that. And we can't wait to see you again. We're gonna have a lot of exciting guests and working together. And as always, you'll hear us say at the end of every podcast, we are stronger together. So let's do it. Let's become stronger together. Have a great day.