Move It or Lose | Episode 103 Replay | Down and Dirty Truth About Living With MS

Summary

Move It or Lose It – Episode 103 Replay: The Down and Dirty Truth About Living With MS
Host: Kathy Chester
Guests: Julie, Dawn Morgan
Release Date: August 13, 2025

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Episode Overview

This episode of "Move It or Lose It" offers a candid, unfiltered discussion about the realities of living with Multiple Sclerosis (MS). Host Kathy Chester, herself an MS warrior and fitness trainer, invites friends and fellow MSers Julie and Dawn Morgan to share their raw experiences, daily challenges, emotional struggles, and strategies for coping with both MS symptoms and the stresses of life. The talk peels back the curtain on invisible illness, guilt, resilience, the importance of support, and the beauty that can exist within difficulty.

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Main Discussion Points & Insights

1. The "Typical" Unpredictable MS Day [00:38–07:40]

• Dawn’s Story: Dawn shares a stressful weekend that captures the unpredictable, compounding nature of MS:

  • Lost car keys, dealing with a malfunctioning old car, confusion with dealerships ("Why would they cut a key and not probate it?" – Dawn, 04:10)
  • Managing single parenthood while her son falls sick with strep throat, feeling overwhelmed and stuck waiting for help.
  • How MS-related cognitive fog and fatigue amplify everyday problems.

  Notable Quote:

  "I don't know if it's MS brain, I don't know if it's me. But they never really treat women correctly [at the dealership]." (Dawn, 04:24)

• Emotional Toll: Kathy and Julie empathize, highlighting the heavy emotional tax everyday setbacks take when compounded by MS.

  Notable Quote:

  "I would be in tears, I think." (Julie, 05:48)

2. Spoon Theory & Energy Management [07:40–10:41]

• The group discusses how even a "successful" routine activity—like making it to a doctor's appointment—can drain all available energy ("Your spoons are done." – Kathy, 08:37), leaving no bandwidth for the rest of the day.

  Key insight:
  Healthy people often underestimate the impact of routine events on those with chronic illness.

3. Parenting With MS [09:16–14:31]

• Guilt and prioritization: Balancing care for oneself and dependent children, fearing being a burden or failing their expectations.

• Stress and physical symptoms overlap (e.g., incontinence when under pressure) and the emotional fallout.

  Notable Moments:

  • Dawn recounts having to turn home after a bathroom accident:

    "Total TMI, but it's real. Peed all over myself." (Dawn, 11:20)

  • Kathy:

    "Failing and pretending like we're okay... that's our whole life." (Kathy, 12:40)

4. The Invisible Illness & Hiding the Truth [12:54–17:43]

• Discussing why MSers hide struggles, even from partners and children, to avoid being seen as weak/burdensome or facing abandonment.

  Julie’s reflection:

  "If we showed people what it was really like, we’d see their true colors, and they probably wouldn’t stick around." (Julie, 14:20)

• Protecting loved ones from their pain ("It’s a protection for them, almost… we don’t want to feel like a burden." – Julie, 15:01).

5. Strategies for Emotional Wellbeing [16:44–19:05]

• Dawn introduces cardiac coherence breathing as a way to manage rising anxiety and regulate stress [17:17].

  Dawn’s practical tip:

  "You watch this ball. It goes up and then it goes down. As it goes up, you inhale for like five... and then exhale as it goes down. It lowers your heart rate." (Dawn, 16:50)

• The group discusses therapy, the difficulty of medication side effects, and seeking holistic support.

6. The Power of Community and Online Support [18:14–20:25]

• Recent Instagram Live sessions to foster real conversations and peer support, especially valuable for single parents and those who feel isolated.

  Insight:
  "Nobody really gets it but us." – Kathy (27:07)

• Acknowledging the benefit of having a support network (family or found family) and the pain/guilt when asking for help.

7. Guilt, Overcompensation, and Asking for Help [25:44–29:13]

• Danger of believing needing help is failure, when actually "people that are worth it in your life don't mind stepping in." (Julie, 26:01)

• Internalized guilt prevents reaching for needed support, even among friends.

8. Sharing Realities with the Newly Diagnosed [29:13–30:56]

• What helps newcomers: seeing others thriving despite long struggles, honesty about the bad days ("I went from naive optimism to newly diagnosed again" – Julie, 30:16).

• There’s comfort in honest negativity and mutual validation, not empty positivity.

9. Dealing with Disease Progression and the Medical System [29:48–38:35]

• Julie discusses recent disease progression—"I felt like I had control... and then it was gone. Just like that." (Julie, 30:07)
• The emotional whiplash when progression occurs despite best management.
• Kathy and Dawn critique the healthcare system's lack of urgency and empathy for chronic illness needs.
• Medication side effects deeply impact mental health ("I've never really battled depression with this disease until [this drug]." – Kathy, 33:56)

10. Therapy, Neuropsychology, and Emotional Coping [40:44–42:42]

• Julie starting neuropsychological therapy for the first time, encouraged by the group.
• Importance of finding the right therapist ("By the third time, if you don't feel the connection, move on." – Kathy, 42:09)
• Tools and actionable strategies for coping with emotions and cognitive challenges.

11. Gratitude, Resilience, and Final Messages [43:13–45:14]

• Despite the pain, each panelist expresses pride in their lives and resilience:

  Notable Quotes:

  • "I wouldn’t trade this life for another life… I'm really proud of all of the work that I do." (Julie, 43:43)
  • "I'm proud of myself. I love who I am now... I would pick this life. Sounds crazy, but I would." (Dawn, 43:55)
  • "Just look for the beauty within that hardness." (Dawn, 44:27)

• The episode closes with encouragement to find beauty in tough times, to reach out, and to recognize the extraordinary strength that often goes unseen.

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Notable Quotes & Moments with Timestamps

• "Nobody gets it unless you get it, unless you have this insane disease." (Kathy, 01:29)
• "Our whole life is literally failing and pretending like we're okay." (Kathy, 12:40)
• "If we showed people what it was really like… they probably wouldn't stick around." (Julie, 14:20)
• "Make it your mission. Turn a negative into a positive." (Julie, 43:43)
• "I'm proud of myself. I love who I am now… I would not trade anything either." (Dawn, 43:55)

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Key Timestamps for Important Topics

• Dawn’s chaotic day & the emotional toll: 02:01–07:40
• The Spoon Theory and energy management: 07:40–10:41
• Parenting through MS and invisible struggles: 09:16–14:31
• Why MSers hide their illness: 12:54–17:43
• Cardiac coherence and coping tools: 16:44–19:05
• Instagram community and single parenting: 18:14–20:25
• Guilt & help-seeking: 25:44–29:13
• Progression and honesty with newly-diagnosed: 29:13–30:56
• Medical challenges & mental health side effects: 33:56–38:35
• Therapy and neuropsychology: 40:44–42:42
• Final affirmations and gratitude: 43:13–45:14

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Episode Tone

The conversation is deeply candid, empathetic, occasionally raw, and darkly humorous. The hosts and guests embrace emotional vulnerability, mixing laughter and tears, frustration, encouragement, and hopeful realism rather than empty optimism.

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Summary

"Move It or Lose It" Episode 103 is a masterclass in MS authenticity. Kathy Chester, Julie, and Dawn lay bare the daily chaos, invisible symptoms, emotional storms, and guilt that come with MS, while also celebrating the fierce resilience, love, and camaraderie that sustain them. It’s an invaluable listen for new and seasoned MSers, loved ones, and anyone seeking to understand the true day-to-day of chronic illness.

Transcript

[A]

Foreign.

[B]

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 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.

[C]

Hello.

[B]

So we are excited to do another episode or Move it or Lose It. Today I am joined with Julie, Sam and Don Morgan and we are just going to be extremely raw and real about Ms. And the stress when things just don't ever go our way. And when we wake up and we have an idea of what it's going to be like and. And it goes completely different and how that affects us emotionally and how do we go on with the day? How do we know to take that next step? What does that even look like? And so I've asked Julie and Dawn. We had planned to do this and of course whatever you plan, we know is going to go bonkers crazy. And so I just. Don and Julie, I'm so grateful to have you both on because I love you both. We've known each other for a long time now and I love our friendship and I love the fact that we could text each other all morning and be like, what is happening today and why is it all going nuts and what do we do next? And like, we just shared. Nobody gets it unless you get it, unless you have this insane disease. So, Don, I'd love for you just to share what you went through because it's such an Ms. Thing. If our, even our newly diagnosed that don't get what is this and why is, why am I feeling like this? Help them to understand a day in the life of us.

[D]

Well, first, I'm happy to be here with both of you, so thank you.

[B]

Thank you.

[D]

I can just back up. On Saturday, my son went with his dad, so I had the day to do laundry early in the morning and just relax. I spoke with one of my girlfriends and she said, hey, dawn, do you want to go to the museum? I said, oh, that would be awesome. Let's do it. Do it. Because I haven't done much and I wanted to get out, get fresh air. I told her I'd meet her by two and in my slow Ms. Ways, I was there a little bit after two, so I was kind of frantic. And I took my car key, put my Car key, my pocket. And I said, oh, better not put it there, it'll slip out. I put it in my bag, put it in my bag, thinking it was secure. Well, we had a, the best time at the museum. We went to this awesome restaurant, met some people from like Spain and Mexico and just like had a ball. And then I, the end of the night, she's like, okay girlfriend, see you later. You know, go to my car, look in my bag. Not there. My key had fallen out. Mind you, I have a really old car. Okay. So I'm like, oh, well, I have a spare key at home. Couldn't find the spare key, couldn't find the car, couldn't find anything. I mean I was still there and I was just like, oh God, where is it, where is it, where is it? So I'm stuck. The AAA had to come to my car because I couldn't keep it at her building. D.C. long story short, they towed the car to the house. I'm Ran Ram Ram rummaging through everything, couldn't find the key. So I got called the dealership. They were like, oh, you're in luck. We can get the key made for you. So they made the key, got the key yesterday, got home. I asked my son check the car. So he opens the car door and he's like, thumbs up. It's. I was like, oh, awesome. It's. The key is ready. And I kept asking the gentleman, are you sure it's going to turn the car? Sure. He said, well, I didn't do it. I didn't make the key. The, you know, Bo, it's an old bobo bobo. Okay, get in the driver's seat, try to turn it up. Doesn't turn. So mind you, it's super cold here too. Long story short, again, I called the deal, another dealership and they were like, why would they give you a key? Why would they cut a key and not probate it? Right. You know, and I don't know if it's Ms. Brain, I don't know if it's me. Being a woman in a m. All male dominated car world, they never really treat women correctly.

[C]

Never.

[B]

And so I'm always terrified to go to the dealership. I'm always like, no, I'll ask my son. Someone come with. I'm not doing this too many times.

[D]

Yeah. And I just didn't have the wherewithal and I just wasn't thinking, oh right. Make sure, you know, I just, I was just happy to have the key because.

[B]

Right.

[D]

I didn't want to walk in the cold. And then we've been walking and I'm miserable. But anyway, So I called AAA this morning and started at 7 and I'm still waiting for the truck. In the meantime, my son tells me at 7:30, Mom, I think I have struck throat again. He's swollen, sore throat, chest congested. Gave him a COVID test, he's negative. His dad luckily was like, I'll come pick him up, take him to school, school. So I called the pediatrician and they were like, when can you get him? And I was like, well, let me just get the car. The guy get the key program within minutes he said. So they've been waiting for me and I'm still waiting.

[A]

That is so frustrating.

[B]

Yes, very much so.

[A]

I would be in tears, I think. Yeah, I really do.

[D]

I would be years.

[C]

I cannot tell you how excited I am to announce my partnership with foot Scientific. Their Elevate 360 drop foot solution is amazing. It's lightweight, it has customized sizing which is amazing. I've been in braces where they are much too big and bulky. This one has memory foam, it's comfortable. I have walked my dog, I have run with it already, I have danced in it and it is amazing. It has stainless steel anchors which you can wear them in any shoe you want to. But to be able to have them connect to your laces so that you can lift the foot so that the drop foot isn't so bad and know that they're safe in there is so incredible to be able to have this. To be able to have it on your ankle and then attach it to a tennis shoe, to attach it to a heel actually, or a sandal is absolutely amazing. I cannot tell you how excited I am to be a part and partner up with Foot Scientific. They are truly here to meet our needs. So I encourage you to go on to the [e-mail] check them out and 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.

[B]

And so I think the difference is when we have Ms. And when it affects us emotionally, it triggers what to do next. Where before, when we think about our bodies and our minds, before it seems like it was so much easier to know. Okay, then. Okay, we'll do this. This is the next step. This is the next step. But when emotionally we get triggered and so many things happen, it doesn't feel like we can go there sometimes. It just feels like it's a shutdown. Do you feel like that today? Like, it's just shut down and it's like, I don't know, the next thing right now because the stress is so overwhelming sometimes it just. Everything shuts down.

[A]

Well, this is her day now.

[B]

It's just screwed.

[A]

Yeah, that's it.

[B]

Yeah.

[A]

I mean, even when you have a doctor's appointment, even if that goes completely to plan. Yeah, your day is screwed. Like, that's. Yeah, you did. You did that one big thing, and that's it. Like, you're not gonna use.

[B]

Your spoons are done.

[A]

That's it.

[C]

Done.

[A]

Know, like, I have my MRI on Monday. That's. That's my day, you know, like.

[C]

Right.

[A]

Whereas, like, a normal person would be like, okay, so I'll cover my MRI at 9, and then I'll go to work at 11.

[B]

Yeah.

[D]

Like, nope.

[B]

And that's. I think. Go ahead, Julie.

[A]

Do.

[B]

Do you think that that's the hardest for people to understand? When we still look the way we do and we get something done, like an mri or what happened this morning, and people will be like, okay, well, that was. That was bad. But shake it off. Let's go. Like, you need an entire day, seriously, to, like, recover.

[A]

Yeah.

[B]

And it's tough.

[A]

And now dawn has to worry about having her son not feeling well, which compounds all of it. Because he's the priority.

[B]

Exactly. I mean, when it's. When it's our kids, that's a whole different level.

[C]

Right?

[B]

When something's wrong with our kids.

[A]

I.

[D]

Mean, you can understand and relate. I'm sitting here the whole day like, oh, my God, is the nurse going to call me? Should I take the metro to the school? He probably has a fever. You know what I mean? Like, everything, right?

[C]

The.

[B]

The fear of all that stuff. It. It. There's no. When you feel trapped and stuck and you're sick and you're waiting for, like, the phone call, and it's just in that waiting game. There's no explanation for what that feels like differently than other people. And it's not like, it's not a conversation for us to have as a. As a. How do I want to say it? As a boohoo. Like, we need you to feel sad for us, but more of an awareness. Understand the diseases. Understand what it does to us, to our brain. And to. For us to have any kind of normalcy is not going to happen. You know, what it does to us is make it so. Exactly what you said, Julie. That's it for us.

[C]

Yeah.

[B]

You're gonna. You're gonna get your son, and then that's it. The day is going to be about that and the ability to do other stuff. Well, it's not there.

[D]

How do you all handle. You know when you wake up and you're like, okay, this is my trajectory for the day. And then all of a sudden you're like, boom, boom, boom. You know, how do you handle that? Because, like, yesterday, had to take the metro to go get him.

[B]

Right.

[D]

I'm halfway. No, not even halfway. I'm at the metro. Walked all the way down. Total tmi, but it's real. Peed all over myself.

[B]

Yeah.

[D]

Had to turn back around to come back and changed and get clean.

[B]

Yeah.

[D]

Because.

[A]

And I like the stress of. It doesn't.

[B]

Yeah.

[A]

Any of your.

[B]

No, never TMI in this. Yeah. I would say that the times that. Julie, I want you to go, that. That's happened always when I have a client here waiting or something like that, I'll think like, please let me make it. Please let me make it. And for.

[A]

No.

[B]

Then it just. There it is, and I'm like, perfect. So now I have to go home, change everything, and wash up late for the client, and I'm frazzled. Now I've got to get my brain together and think like, hey, now what am I doing? Because I can't look like a. With a client. And even though they have. They have Ms. Or something as well, I don't want to go in there as the professional.

[C]

No.

[D]

Sorry.

[B]

I just peed. Had to clean up real quick. Now I'm back. So it. It messes with my whole day because I think it's. It's just that I focus constantly that day on, wow, you really are sick. You really are. Like, there's no hiding it. And now you got to clean your car and you can't even hold your pee. Like, for a second, you focus on.

[A]

The fail and the depression and, like, the sadness that comes from that.

[B]

Right.

[A]

You're like.

[B]

And then that's my goddess.

[A]

And that's. Our whole life is literally failing and pretending like we're okay.

[B]

Yeah.

[A]

That's all it is. It's.

[B]

That's what we talked about.

[A]

It's like, Is.

[B]

Yes. Failing and trying to hide it.

[D]

Yeah.

[A]

And that's.

[B]

And look normal.

[A]

That's it. And that's what we're like. We're so proud. We look nor. Like it's invisible. We're up inside and it's just. It's wearing, I think. And, like.

[B]

So why do you think it's so big for us to hide it? Why do you think we work so hard at hiding it?

[D]

Well, number one, we're women. Supposed to be strong all the time. You know what I mean?

[B]

Absolutely.

[A]

Yeah.

[C]

Well, what are.

[B]

What are we afraid of? Like, what's. What's the worst that can happen? I mean, seriously, like, I'm just asking you guys.

[A]

I think. I think. And this is going to sound really grim, and I think I'm just in a really bad mood today, so take it for what it is, which I.

[B]

Think is the best time to do this, because it's so raw and real and it gets to people where they are because I think sometimes we go on the podcast and everybody looks great. My hair is a mess. You guys are a mess. Everybody just is a mess today. I think it's so perfect because this is real and raw and it's the. The way our days go. And if we come on the podcast all the time and we're smiling and everything's great and our marriages are all perfect and our kids are great, they make. Nothing's ever wrong. I think that's the fakest way to really show what Ms. Is. This is Ms. This is Ms. And so I don't remember what you were saying, Julie.

[D]

No.

[A]

So I think. I think.

[B]

I know.

[A]

I think the reality is if we showed people what it was really like, we would see their true colors and they probably wouldn't stick around. And I think that's sad to say, but I think it's a reality.

[B]

Yeah. I think we even go so far as to hide some from our partners. Would you say? I mean anything?

[D]

Yeah, of course.

[A]

I mean, Adam says it all the time. He's like, I wouldn't know you're having a bad day unless you tell me. And I don't. Like.

[D]

Yeah.

[A]

I mean, you can tell I'm in a bitch mood today, but.

[B]

Yeah, No, I think the negativity, too. I feel like I'll say, like, go do something different because I'm so negative right now. I don't want him to hear all that.

[D]

Yeah.

[B]

You know, it's like, you don't need to hear my negativity right now because.

[A]

It'S like a protection for them, almost. Like, we don't. We don't want to feel like a burden we don't want to feel like we're impacting anyone else's lives. And, you know, that's why we fight so hard.

[D]

So, like, I don't know.

[A]

It's not, it's not a great feeling.

[C]

No.

[D]

How do you think? It's very hard. Yesterday I yelled at Dustin, and I feel horrible because he gets, like, those emotions that I, I try to, I hide Ms. He has no clue. But yesterday I just couldn't hide it. Like, I'm rushing to get him to make sure I'm on time. Right. And I, like, he doesn't know I peed on myself before going to get him. No, like, the pain that I'm in, and I'm like, I'm literally on the train like this. Like, oh, my God, you know, like, you know, so he. He's texting me and I'm like, where are you? Where are you? I was like, I have. I have so much going on and I need to be back by four. And that's when I texted you, Julie. And I was like, right, okay. You know, it was just, like, so much going on, and I. And I was just like, I can't do this. And I feel bad sometimes as a single person because I don't have that buffer as a partner, you know, and he can't carry my burden, and it's not fair. And so I, I had to catch myself and I said, what do you want for dinner? Yeah, whatever you want. You can order Uber Eats or whatever. But I ended up cooking and making, like, this elaborate meal, even though I was in so much pain and I was just miserable. But I, I, I. And I wanted to add. I've been practicing something called cardiac coherence. I don't know if you.

[B]

Okay, no, tell me that, because I have heard of. But I don't know, I have to.

[D]

Say I forgot it's a breathing technique. And so I've been into breath work lately because of the anxiety that Julie and I have been talking about before. So it just lowers your heart rate. So you watch this ball. It goes up and then it goes down. So as it goes up, you hold for like five or six. Hold, hold, hold. And then you. You inhale for, like, five. And then as it goes down, you watch the ball and you exhale.

[B]

Okay, I love that. Have to show us that maybe we'll do a live, like, Instagram one where you can show us that. I would love to do that because I've not done that before.

[D]

It's proven medical technology, and it lowers your Heart rate and, you know, it's good for MSers. For sure.

[B]

Yeah, for sure. Definitely. I love that. So you guys do that a lot to kind of help ease things when you're really overwhelmed.

[A]

I don't, I, I, I don't. But I, I would, I would try it.

[C]

Yeah.

[B]

I mean, that's one thing that helps.

[D]

Yeah. If you don't have, like, medicine or something. It's like, I'm doing enough already, like.

[C]

Right.

[A]

Yeah.

[B]

So, yeah. So moving a little. I don't want to move too far away from this because I think it's really important. The stuff that you guys were talking about together, the thing that you guys did. What? Tell me about that.

[A]

We just did an Instagram live, which I think we're going to start doing more often.

[B]

Yeah, I love that.

[A]

And I think Damien's going to get in on it. We're going to try and, like, whoever wants to join. I think last time we started, just dawn and I.

[C]

Don.

[A]

And me. I'm sorry. And no worries. And I think it'll be fun to have other. We had so many great MSers join that they should have just been on with us to have the discussion. So I think just giving, like, an impromptu, hey, we're on Instagram. I'm sure hundreds of other people are scrolling, but if you want to hear, like, what we're thinking about today.

[B]

Definitely.

[A]

And we're just so open about it, both of us, for sure.

[C]

So.

[A]

And I think that's, that's what's important to us, is to, like, be transparent and not. Not pretend like it's all, you know, fine. Because it's not. Yeah.

[B]

No, I love that. I'll join you at any time. I love that. I love that you guys do that. And it's so important to be raw. And the fact that you come at it, John, as a single mom, which is so big because, you know, in the women's support group, there's so many that come with that, with that. And it's like, help me with, with this, because it's a totally different. And you know, I was a single mom for so long. It's a completely different emotional being than, Than having a partner. It's a different fear. It's different than, than anything else. It's a. I mean, I remember that constant fear of what if, what if something happens? What if I can't do this? And also a different pressure of that feeling like I have to do everything. And so that pushing yourself is much, much harder because there isn't that other Person that could carry any slack.

[A]

Like, it takes away the parachute, Right?

[B]

Yeah, for sure.

[A]

That's a lot for anyone. I better. You know, especially when you have Ms. I think dawn, like, you. You manage and you like, even your big trip coming up. I mean, you make it.

[C]

You.

[A]

You make it work, even though it's really hard. And I. I think. I think your son's going to remember how much you've done.

[B]

Yeah.

[A]

And those accidents. I know. I know that it's going to wear on your heart and it. Think about it. And that. That's not. It's not going to be erased. Our brains forget everything but that. Nope, that'll stick around. Yeah, but your son doesn't. And I know, like, you hide that from him and it's to protect yourself also, but he's going to remember you're going on this epic trip. All the boxing, all the amazing things, all the epic meals, everything you do. And I love when Dawn's like, I lost it. She's like the calmest person in the universe. If you ever saw me lose it, then you.

[B]

Oh, yeah, that's. That's what I'm thinking. Like, so, first off, where are you guys going?

[D]

Tokyo.

[B]

Oh, that's okay. I saw that. That's awesome, Don. They'll never forget that. That's amazing. That's awesome.

[A]

All the practices, all the things that you do for him all the time.

[B]

I mean, Don, it could take forever, but I can tell you now that my daughter's pregnant and going through this, the amount of times that she's come to me and. And said, I don't know how you did this. I don't know how you did this with Ms. I don't know how you did this. And then wanted more. I don't know how you did this. And, you know, because she's thinking now, you know, while I was pregnant with my third, how did I work with both of them? You know, and then thinking later with ms, like, you. You enjoyed us. Like, you literally enjoyed being a mom with all the stress of, you know, going through chemo and all of the pain and stuff. She's like, I can't fathom how you did this. And so I think as they age and as they see things, so this is hope for you guys. They recognize what we've gone through. And she will often say, you hid it from me, which I wish I would have known more, but you are such a badass. Like, and I don't know how you even coached my soccer in the heat with a backpack with Silas, on your. On your back. I don't know how you did that. Like, I can't walk from the kitchen to the couch without wanting to sit down and have a dessert, so I don't know how. So it. It is. You're going to receive that later. You know, sometimes it takes them longer, the boys, it takes a little longer. But it is really cool when they can see that later. And so don't forget that they may not see it now, but they see it later.

[D]

I agree. I think it does come later. And I'm getting teary because of two things. One thing, I have a support system even though I don't have a spouse. My parents are incredible. And my circle of friends, including you all, like, my local, like, they're just awesome, you know, I would not have been able to get get through the past couple of days without my girlfriend who I went to the museum with. Like, she was able to take me to get my car. Long story short, again, my dad did some research because he's going on the trip with us.

[B]

Okay.

[D]

I'm going to make sure that it's easy for you.

[B]

That's really neat.

[D]

Yeah. Like, so that the walking will be so hard. Like, my dad is so far not far bar removed, but like, the fact that he would even do that. You know what I mean? I do all the work with, like, making sure things are accessible, like, because I don't want to burden. Like Julie said, you don't want to feel like a burden, you know, but like, for my dad to say he's like scouting out elevators and making sure that I can go on the elevator and so it's just easier like that. That touched me in such a way.

[B]

Absolutely. And John, it is. It's so huge that he did that for you. Because when we're trying to get everything ready to have someone step in and say, I've got this part for you, it's so big. And. And I believe it's such a gift and. And you know, my faith and stuff. And I believe that, you know, I don't have parents that can step in. That isn't something I've ever had. But I do have other friends that will step in. And I have, you know, I have a husband that will step in. But, you know, I think that we're given people in our lives that can step in for us. And it may not be, you know, the people that we had assumed would. It may not be like your parents or a spouse. We don't all have the normal that you would Expect. And there's times that we go in, I remember being younger, like in my 20s and going in thinking like know was people coming in with their moms and stuff thinking I should have a mom with me. And that just wasn't. I didn't have that. I didn't have parents. And so that was hard. And you know, for a long time there was nobody. There weren't parents or a spouse. So I did, I would be in there and get through this like, you know, like pity party. And then I was like, this isn't helping anything. It's not helping me, it's not helping my kids. But it is hard when there's know you've got to kind of find that team and and so I'm so grateful, Don, that you've got your dad.

[D]

And the other thing like when you were talking about coaching soccer and things like that and like watching Julie's. I recommend everybody to go watch Julie's Instagram.

[B]

Oh, I love her stuff. You have the best posts and Instagram stuff.

[D]

I having kids and maybe you all can probably speak to this like you feel like Ms. Has robbed us, but you don't want it to rob your child.

[A]

That's the hardest. And I think one thing, I think it's really easy to find people to step in. I think we don't give enough credit because I think most people would step in. I think it's emotionally traumatizing and guilt ridden feeling like you need someone to step in. And I think that's what makes us sadder because I think, yeah, people don't mind. Like people that are worth it in your life don't mind stepping in. But it's when you realize you need someone to step in that it just breaks your heart. It's like, yeah, what the. Like I can do this. And then we get st and we overdo it and we like overcompensate. I think most parents with Ms. Do more than they physically probably should because they overcompensate definitely. But like Don, if you ever needed me to step in, it would never, it would never in my mind be a step in. It would just be a friend, like hanging out and doing whatever you need but in you, like in it, like even vice versa. I know you both would step in in a minute.

[B]

Absolutely.

[A]

If I text you, you both would step in. But I have guilt about the need for it and I think the guilt is the hard part for me and.

[B]

That'S something I think we have to get over. I don't know how I Just know that we have to because. And sometimes it's because we've been burned before, right? We've asked somebody and they may not have and we have to get over that because when that happens, you know, there are going to be people that don't or that do disappoint us. But it, we can't let that be like the reason we stop because there are people in our, in many people that, that are there and, and it is tough. But we've got to go ahead and ask because I know the same. I know both of you would step in for me and so that can't stop me from asking. And I would hate the thought of either one of you asking because there's no, nothing that I wouldn't do for either one of you. And I just want that to be there. And it is a very interesting time in our world where we have met in such a strange. Not strange anymore for us, but met online. But I'm so excited the idea of being able to go to different areas to see you Don, and knowing that I'm going to Colorado and I get to see you John or Julie and you know, that's an exciting thing to be able to do. And so I think that, you know, being able to be authentic with this and being able to ask for help from each other because nobody really gets it but us. And we can try to explain, but sometimes I just get tired of trying to explain what, what things feel like because I. You don't. People don't really understand and it. So it just gets frustrating. But anything else that I'd like you guys to talk about would be like some of, some of the things that you feel that when you share and stuff on, on Instagram Live, what are the things that you feel resonate the most when you're talking to like a newly diagnosed patient or you're talking to a new mom or someone that. What are you able to share with them that you always feel like this really resonates with them?

[A]

I don't know that it's something like word wise. I think it's having them see someone that's been in the trenches for X amount of years and is still thriving. I think that's it because like my words actually are pretty negative. Not all the time, but like I am pretty. Especially today apparently. But like I'm not always like it's gonna be great especially you know, since April of this year because you know, of last year.

[B]

Talk about that. What about since April? So people that don't know Yeah, I.

[A]

Had a lot of progression in April, so I felt like I had control and I was really, like, proud of how well I was doing. And then it was done. It was gone. And just like that, you have. I don't want to cry. Takes a lot.

[D]

Of.

[B]

Yeah, it just.

[A]

It just takes a lot.

[B]

Yeah.

[A]

And I think I went from, like, just naive optimism.

[C]

Yeah.

[A]

To newly diagnosed again.

[D]

Yeah.

[A]

So I don't know that I've had, like, any positive messages since that because I'm, like, still pissed. I have my MRI on Monday, so hopefully that's a good thing. My gut saying it's not gonna be, but that's just probably my negative state right now. But I think. I do think that the fact that I can still hide it. I find comfort in, like, seeing you guys and seeing, you know, us all. That's like, okay, we're gonna be fine. It's gonna suck inside, but we'll be able to mask it from our friends and our families and our children. Our children. You know, that's the priority for me.

[C]

Right.

[A]

And I think that's the comfort that people find in us. And it's. And it might actually be the comfort in knowing that it sucks and we're honest about it. But yeah, we get it.

[D]

Right.

[B]

We know that you're hiding it and.

[A]

We'Re here for you.

[D]

Yeah.

[B]

For sure. Have you. So you get the. You get an mri and so what is. What are the worst thing that they have found so far since last April?

[A]

So I'll find out Monday. So I have my disc right here. So I don't forget it. So they compared my MRI from when I was. Well, from 2011 to 2023. And then from September. No, July of 23 and September of 22. And there was a. So from 2011 to 22, there was a lot of progression, but then I stabilized, and then I had a significant progression in three month period.

[D]

No idea.

[B]

Why are they putting you on different medication again?

[A]

Okay, so I start a different medication.

[D]

It's just, I was.

[A]

I felt like I had control.

[C]

Yeah.

[A]

And then they took it.

[B]

Yeah.

[C]

Yeah.

[A]

So I'm sure I'll get back to it and I'll be positive again and I'll. I will. I'm just like, I've been hit and.

[B]

Yeah, it's a huge downer when you're doing okay. And then all of a sudden it all hits the fan. You're like, where is my body?

[A]

Yeah. And then like, when the doctors are like, well, I mean, you know, you have this disease, right? Like, yeah, it's surprising them.

[B]

Yeah. I'm upset by. And they kind of treat you like you're like, there's something wrong with you. Like, you have it. You have a debilitating disease that will progress.

[D]

So.

[A]

Yeah.

[B]

Like, how is it surprising?

[A]

And I'm like, it's not. It is a surprise because you're on medicine that's supposed to.

[B]

Right, exactly.

[A]

That's why it's a surprise. And.

[D]

Okay, though. That's. That's the question. Are you ever really okay? Like, you.

[C]

Yeah.

[D]

You're not.

[A]

No.

[B]

I think that that's how Dawn. Say, like, how have you been physically for the last year? Where are you physically right now?

[D]

I haven't had any progression. I don't. At least my doctor told me that in July or. No, where are we? Not July.

[C]

I'm with you.

[B]

We were in February.

[A]

I know.

[D]

Whenever.

[B]

I do that all the time.

[D]

I. Yeah, I just saw her two and a half weeks ago. Yeah, she said my Ms. Was quiet, but I still have all the symptoms. And. Yeah, it's still there. I have. You know, she gave me.

[A]

And, like, just because your Ms. Is quiet doesn't mean you're not, like, peeing your pants.

[B]

Like, there's a million other things that are, like, exactly.

[A]

Seriously impacting your ability.

[B]

Just means that there's nothing lit up in your mri, but all the symptoms are there.

[D]

And take me for the bladder, so. Yeah, the bladder. Yeah, yeah, yeah.

[A]

Like, the. That's the thing. It is quiet. You still have symptoms.

[B]

Yeah, they'll say that a lot. Like, your MRI is. Looks like there's no progression. I'm like, well, good. I still feel like crap. And the medication you put me on has damaged my body, and I don't feel the same at all. And I got off it for a year, and I was on nothing. I just started placenta. I'm not sure yet what it's going to do, but I definitely feel much different. And I don't feel like me. And I know that way or a bad way in a bad way. I felt. I feel like I'm more. I don't feel as strong. I feel like I. I'm more. I would say I've never really battled depression with this disease until I went on over in Ocrevus. I'm just saying that's just for me. Like, it's just not done well for me. And I got off it for over a year because nobody could give me any information. It was like doctors were just, like, pushing. Pushing Ocrevus.

[D]

Yeah.

[B]

And Every time I'd ask a question, it'd be like, well, what do you think? I'm like, like, help me is what I think. So it just has been. And now they're concerned still about some of the. The symptoms that I'm having, and it just cracks me up. So they're like, you know, we want to see you as soon as possible, so we'd like to see you in June. I'm like, it's February, March, April, May, June. I'm like, sounds like it's a big concern, so.

[D]

Right.

[B]

It's just so crazy that, you know, it's like, we're in pain. There's things happening, and yet it's like, okay. It's like you don't feel as you don't feel confidence anymore that you can go to the doctor and it's going to help sometimes. And I think that's. That's become very disappointing. And so you feel like your body's getting worse and you feel the symptoms are not. But I just don't feel like I'm in my same body. I feel like I jumped into someone else's body and it happened quick. Once I was off to Sabri, into Okis, it was just boom.

[D]

It was very.

[A]

Did you go back on to Sabri or.

[B]

No, no, I'm not able to get back on that. So I'm stuck. And I didn't really need to get off it. It was just a of events that happened. So. But it is a bummer.

[D]

It's the thing like, what Julie said you were doing okay. And so, like, when you think you're doing okay, you're like, okay, my body is calming down, but now I gotta deal with the emotional part. Like you said, Kathy, whatever. It's like. So that's where I am now.

[B]

Yeah.

[D]

Because I'm literally holding on like, okay, my body's all right, but I'm still holding on. But now I'm dealing. Every, like every week I have therapy and, like, I'm dealing the emotional aspect because body is like, quiet right now. But my mind had to was on hold for dealing with all the other.

[B]

That came with 100%. I feel like Don, emotionally, like, at any point I'm watching you guys start to cry and like, oh, that can happen at any point, but. And I'm not a crier. And I'm telling you, since on okrabus and all this, you could say something to me and I'll just bust out crying. I'm like. And the way that I behave and even my Marriage. I'm like, I don't even know why I said that. That was so mean and so rude and I'm so sorry. It's just like the way my behavior is, is different. Like emotionally. Crabbiness. Julie, you can. I think I would outdo you and my bitchiness and crappiness. I'm like, what is wrong with me? And I feel that a lot. So I never felt that on. To say, we always. I mean, we all know how much I move and exercise, so that's always kept me from ever needing anything. I've always felt like that was always in my. My doctor that I really loved always said, I feel like that's kept you from ever needing to be on antidepressant because you're the most bubbly person in here. So they always looked at me like, jesus, what is she on? So we want that. And I'm like, I guess it's exercising. I don't know, but which I do now, of course know. Yeah, but this is the first time on this medicine that I've just been like. I mean, one minute I can be like, sounds good. The next minute I'm like, what? And like, don't talk to me. It's like, what is wrong with me? So I don't know if you guys feel that. Do you guys feel that?

[C]

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[B]

Go ahead and grab it. So I don't know if you guys feel that. Do you guys feel that?

[A]

I like, honestly, when my whole progression started, this is when I started for the first time in my life to try antidepressants. Didn't work. I'm not depressed. I'm not like, I know that sounds crazy. I'm not depressed. I. I've been dealt a shitty hand. I'm taking caretaker for my mom is far shittier than Ms. But then I tried anti anxiety and I was like, I had no emotion. I was flat.

[B]

Yeah.

[A]

And I am. I pride myself in being empathetic. I pride myself in being the happy one in the room and the energetic one and the one that brings happiness to other people's hearts, hopefully. But it took everything. And, like, I couldn't cry, I couldn't worry. I couldn't do any. So, yeah, I'd rather be like, an emotional.

[B]

No, I've heard that a lot before. That that's what happens. It kind of numbs you.

[D]

Yeah.

[B]

And so you're not able to. What about you, Dawn? Have you been on any of those?

[D]

No, no, That's.

[A]

I'm starting therapy today because of you.

[B]

Oh, you are?

[A]

For the first time.

[B]

Okay, good. But I'm started.

[A]

I'm going in. Like, I'm usually an optimist.

[B]

And, like, what do they.

[A]

They can't change the reality. Like.

[B]

Well, are you going to a. A just a regular psychologist or a neuropsychologist?

[A]

Neuro.

[B]

So that's what I've been doing since over a year now. And it was actually from when I did an interview with two neuropsychologists, and they put me through to someone at Michigan, and he's been the best thing I've. I've had in a very long time.

[A]

Really?

[B]

It really has been.

[D]

Yeah. Like, it's a game changer.

[B]

Yeah.

[D]

I never needed my neuropsychologist until I had her. Like everybody else. She's. That. She's. It. She. Yeah. It's the best.

[B]

And I would also never thought of going to a man. I would have thought totally. I mean, I cannot say how often I leave. And I like tools, too. I like to leave with tools that I can work on, or else I'm just like, I'll forget what it is that we talked about. And so the tools he gives me to work on are so effective for me that, you know, that week until we meet again, and I just think you're gonna. I pray and hope that you're gonna really like who you're meeting with.

[D]

Yeah.

[A]

Because maybe your contacts. I'll have a recommendation in Colorado.

[B]

That's the thing is. Is think of it as speed dating. And even my psychologist said, by the third time, if you don't feel the connection, then move on. And I'll give you a name because you don't want to waste that time with someone you're not connected to. You know, you don't feel that connection. So I feel like the third time you said, you will know.

[A]

Okay, that's good enough.

[B]

Yeah. But I think we all need that because we need to understand what's. What's going on. And it's different than a regular psychologist who doesn't get what's happening.

[A]

Right. Yeah. Keep you guys posted. We'll see how it goes.

[B]

Yeah, for sure. So here's. I guess, my, My. One of my last questions, and I know we all have things that we need to get going and doing, but what would you say? Like, if you had. If you could. If you could say one thing to an Ms. Patient or leave with that, what would you. What is that one thing that you would like to say to them? What message, I guess, would you leave our listeners?

[A]

I think it's. It's got. It's hard, but. And things might not look exactly the way you envision them, but you could still do incredible things with life. So I'm really. I don't. I wouldn't trade this life for another life if I didn't have my son and my husband and. And I'm really proud of, like, all of the work that I do. So I think make it your mission. Make it something that's. Turn a negative into a positive, I guess.

[B]

Yeah. Very good. And I think you do a lot of good work, Julie.

[D]

Thank you.

[B]

I'm proud of you and Don.

[D]

I'm proud of myself. I love who I am now. Not that I didn't like who I was before, but I would not trade anything either. I would pick this life. Sounds crazy, but I would.

[A]

I think there's such a beauty in that. That.

[D]

Yeah.

[A]

Even though, like, we're sitting here crying and, like. But we're like, this is still a pretty amazing life, you know?

[B]

Yeah.

[A]

Like, in spite of it. And look at all the amazing people we have because of it. So.

[B]

Right.

[D]

That's really hard for me to say.

[C]

Yeah.

[D]

I don't know why, but I would just tell someone that, you know, the road is so beautiful and it's hard. It's hard every day. And just look for the beauty within that hardness because. Yeah. Yeah. The what ifs. You can turn that around and say, but I get to, like, what if? No, no. But I get to look at the sun. You know, if you don't have optic neuritis.

[B]

Yeah.

[C]

Or cataracts.

[B]

Right. I can see out of the corner of this eye, so it's okay.

[A]

There's still some light. Yeah.

[B]

No, that's beautiful. So I just wanted to say thank you guys so much. I hope that this really ministers to and really affects so many of us that have Ms. And that this just really. I know you see us on a lot of different platforms and sometimes it's easy to look at people and say, well, they're doing so great with their Ms. I could never do this great. So I hope this was a really raw time that you were able to see that. Not always great, but if we can turn and reframe things, there's a lot of beauty out there that we can see that we're able to so love you guys and I will see you next time. Thank you so much, Julie and Dawn, I love you both so much. So hold on one second and I will say goodbye to you all and I see you next time and Move it or Lose It. Don't forget, subscribe. And like, love you 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 Lose it podcast air every other Wednesday. If you have any suggestions for future guests or topics, please visit my [e-mail].

[C]

Until next time.