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- [00:00]
A
Being diagnosed with Ms. Is a life altering experience. It can take years to process. But today's guest, Julie, had no such luxury as she was thrust into the battle for her son's life just moments later. Hello, Ms. Gym family. Thanks for joining us for another podcast episode today. It's been so great talking with fellow Ms. Gym members. And today we'll be talking with Julie, who is a longtime Gym Ms. Gym members. So I look forward to hearing more about Julie story. So, Julie, thanks so much for joining us today.
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B
Well, thank you for having me, Jod. I have listened to all of the podcast and I'm almost feeling a little bit starstruck to be here with you, but I'm, I'm truly honored to be part of this.
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A
That's very kind of you. Say thank you for saying now a podcast, but I have to say, being Canadian, I hear an accent in your voice. So would you tell us what state you're from in the U.S. oh, yep.
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B
I'm from Michigan, so we're not too far below you guys.
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A
Okay, but enough of an accent that I can notice something different. Yeah, I know.
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B
I can hear your Canadian accent too. I always love listening to you talk.
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A
Oh, that's so funny. All right, Julie, so how did Ms. Start in your life? Like your beginning symptoms or what? What made you think something's not quite right with my body?
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B
Well, it's. I had a long time before I was officially diagnosed, so I had my first son in 1994. And immediately after that I had the, I think it's called their mirrors or lemidis sign, where you get the shocks when you move your neck, you get shocks down your arms. And I went in for all kinds of tests and I just felt in my gut that something was wrong. Something was drastically wrong. And then I started getting shocks in my feet. And I went to multiple doctors. And finally the doctor said to me, my family doctor said I was telling him all my symptoms and he said, well, people like you feel all kinds of things. And I said, people like me? He said, people with generalized anxiety disorder, he said, so you don't really need to be telling us about these symptoms because you're feeling things that, because of the way you're wired. So I continue to feel things. You know, I would have tingling. And I just assumed it was because I was wound so tight or whatever it was. So eight years go by. I had twins in 97 then. And then, interestingly enough, one of the twins was sitting on my lap. He was five. And he went back and broke the bridge of my nose with his head accidentally.
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A
Oh, dear.
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B
Which had this huge optic neuritis flare. And at that point, I went to the ophthalmologist, and she was asking me about all these other symptoms, and she said, you know, I think that you need to be seen for Ms. She said, the way your eye looks. And that was such a relief because I looked it up and it all made sense. And so by that time, I had multiple lesions. Many, many lesions. And so the. This big, fancy ophthalmologist that she had sent me to called me on the phone to tell me. And at that point, he told. He was just not great with patients. I said, well, what. You know, what does this mean? I didn't know that much about it. And he said, well, chances are that you'll be in a wheelchair within five years.
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A
Oh, dear.
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B
So that. I mean, you can imagine that I have, you know, three young kids, and I'm working, and I was just devastated and just sobbing. And it. My Ms. Didn't progress. And then I found a good neurologist, and I think she even had words with that ophthalmologist because it was the same community. And I got on Rebif, and then. And it's funny that that ophthalmologist said to me, he's. I said, well, what can I do? And he said, I'll tell you if you. You must avoid stress of any kind. And he said, if you have any stress, you will be in a wheelchair. Okay. So I get with my neurologist. I'm on rebif. I'm just stepping up on it. So I'm not even on the full dose. And between Christmas and New Year's, all three of our kids were sick. They had some kind of a virus. And the son who broke my nose, he's a twin. He just didn't look right to me. He was looking super pale. And we called the pediatrician, and he said, well, they both had ear infections. He said, I can write the same prescription for him. And I said, well, you know how you just have that gut feeling that something is not right?
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A
Yeah.
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B
My fear was that he had pneumonia because he had a really bad cough. That was what my fear was. So my husband took him into the pediatrician, and he. The pediatrician did a. Said, he looks really, really pale. He did have a double ear infection. And she said, you know, before you leave, they had their coats on, getting ready to leave. She said, let me just do a quick blood test. So she did the blood test, and she comes Back in, laughing, said, our machine must be broken, she said, because I didn't see any blood cells in there. And she's laughing. So she said, let me take another, another test. She comes back in crying and just totally rattled and says, I've already called U of M hospital. They're expecting you. This looks like leukemia.
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It.
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B
It looks aggressive because she said, I'm not able to see too many regular cells. It's all leukemia.
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A
So just to recap. So you received the diagnosis and then within six weeks. Six weeks. Within six weeks, your son was diagnosed with leukemia. So obviously all these things going on in your mind, all these concerns, like you don't even have time to process this, your own diagnosis. And you had this really. You were gas lit for so many years, like, long before we even knew what the word gaslighting was.
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B
Exactly.
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By so many different professionals. Then you get this awful advice and this awful bedside manner from this ophthalmologist. So you have basically six weeks to try to process all of this. And so much misinformation. And then, and then your son getting this cancer diagnosis, like, where was your mind at? Like, sometimes, you know, when we have troubles, we try to put something on the back burner. But your diagnosis was on the front burner. And now your son's diagnosis, like, it feels like they, they must have been competing.
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B
It was competing. And I'll tell you, it's funny because I kept thinking how they were wrong. It took me a while to even fully accept that he had leukemia because I kept thinking, well, they were wrong about me. You know, can I really trust this? But I will say, and I'm so thankful that I have, going into this, I had a super strong faith and that's what got me through the entire, you know, it ended up being a three and a half year treatment protocol for him. And it was. It. You would have like aggressive chemo, and then you'd go on like six weeks of maintenance chemo. But it was either chemo or cranial radiation for three and a half years. Without my faith, I don't know what, what we would have done. You know, God just gave us peace. He opened up doors, he opened up appointments, he would, you know, we had the most caring nurses and doctors, and he just in his sovereign nature directed every single thing for us. And I'm happy to say that my son is now 27 years old and he's married and just the picture of health and such wonderful, you know, just like our ms, we can see the good that can come. I Mean, it's a terrible disease. No. None of us would ever want it.
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Yeah.
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B
But, gosh, it gives us, you know, blessings in there. It gives us strength and changes our character, makes us more compassionate, makes us more resilient, pushes us in places that we would never choose. But when we come out on the other side, we're. We're better people. And that's exactly what happened to not just him, but to our whole family. Like, we're all about experiences, because a lot of that three and a half years, there was a time when we didn't know if he was going. If it was. If the chemo was going to work, because it wasn't working for the first 30 days. And they were talking about bone marrow transplants. So it's like having that battle as a family. We just all seize the day and. And do whatever we can to live our best lives. And it's exactly what the Ms. Jim philosophy is. Right? I mean, Coach T is always saying, you know, prepare your bodies, prepare your hearts, prepare your minds so that you can be there for your kids and you can be there at church and you can, you know, whatever you're passionate about, you have to dedicate your whole soul to. To doing that. Because otherwise the days go by and, you know, if you're not totally mindful and totally intentional, you. You won't get where you're. Where you want to go. Looking back on it, many blessings came from, you know, the three and a half year period that changed our family. We're so close. We, you know, we go on vacations together. We just, you know, when things are bad, we come together again. We're just. And that's a blessing we take from that.
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A
That's awesome. And I think so much of that part partly your faith, but also part hindsight, too. Also, you said your son's like, 27.
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B
Yeah.
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Looking back and saying, you know, look where he is now. Look where we are now. You can. You can see the. You can see the blessings. You can see all the positives, all the amazing things that happen. I'm sure in those three and a half years, though, even. Even with the faith, I'm sure there was still some inner turmoil though, as well, like just trying to process. It's your. It's your baby.
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B
Oh, yeah. I can't tell you, you know, sometimes I would have to leave the clinic area and just go and sob because, I mean, you just don't want, you know, he almost had to be put on a feeding tube. I'd have to carry him in it was not a picnic by any, by any imagination. But I think about all of our members in the Ms. Gem and it's like we have those same moments, right? You know, we have the victories and the wonderful times, but then we have the times when we're sobbing because it gets old, you know, it really does. And I'll tell you, for me, when I'm having those Ms. Moments and like my bladder is not doing what I want it to do and sometimes you're just sick of, of having to think about all that, I'll go in to the MOC and I'll search for struggle or bladder or just whatever I'm worrying about. And that has been such a coping mechanism for me to just getting those words of, you know, when people are having bad days. I don't know that I've ever written in to the MOC asking for support for a bad day because I've always gone in there and found what I needed from someone else's bad day. I'll read through all the comments and they apply so lovingly and compassionately. And the same was true in the cancer time. We had a little community of parents and we were all going through that together. So like when I would leave and need to be told, this is all worth it, you know, this is what we need to do. This is a bad day. Remember when Austin was riding his bike. That's my son's name. And just remind me that this is a temporary valley, this is not forever. And that's what is so important and meaningful to me about the MSGM community, the moc.
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A
So just to clarify, for those that don't know, the MOC stands for the Members Only Corner, the Members Only Community. And it is the Facebook group for paid members. And it is, it is a one of a kind source of support, knowledge, love, everything. Like it's full of people with Ms. Or similar neurological diseases that share their daily struggles with their disease and what they go through with their own bodies, their family. Just challenges of any kind. And I have heard so many times that the cost of membership is worth just the moc. Even if you didn't have the amazing exercises or Trevor's knowledge, just having support from people that actually understand and get it so 100%. So yeah, that's, that's incredible. So I just want to backtrack a bit. Julie, did you have any time to process your own diagnosis or did you, did it kind of get pushed aside? Like, have you ever, like when your son was better after three and a half Years. Did you get to process your diagnosis?
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B
I. It's funny that you say that, because I did not recognize that at all, because I didn't. Once I was fully on Rebif and I didn't have any side effects, I didn't think about it at all. And I did not process my diagnosis until the year 2012. So 10 years later, when my Ms. Started progressing in kind of a scary way, I started not being able. I was falling all over the place. I was too tired to keep working at a job that I absolutely loved. My bladder was messing up. I started getting some trigeminal neuralgia.
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A
Pain in your face, and.
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B
Yeah, and so I had. I went out sick, and I was in just terrible shape, and that's when I processed my diagnosis. So for all those years, it was all pretty much about my son because we had three and a half years of treatment, and then five years where we're kind of holding our breath with getting testing, and then I'm working and I was able to. You know, I had things that would come up. You know, I wasn't walking great, but I. I never really. You know, I was just raising the kids and wouldn't allow myself to really think about it too much because I think it scared me. And then in 2012, when my doctor said, no, you really need to be done, she said, you're not going to like what Ms. Does to your body if you keep working.
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Okay.
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So that was scary enough. And then that year was a bad year.
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Did you switch medication at that point?
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No. The funny thing is, after I had all those spots on my MRI in 2002, I never got any more spots. So my doctor said that I'm kind of afraid of what would happen if you came off of rebif, since you're not getting new shots or new spots. So I kind of filed that away, that I need to stay on Rebif, you know, forever if I can.
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A
So.
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B
Yeah. So I just. I think having the lack of stress from work and being able to sleep so much, that I think that's what I needed to kind of normalize a little. But it's funny, I had this issue with stimulus where I couldn't go out places because I would get that pain in my face and I would get super overwhelmed and dizzy.
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Yeah.
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B
And that never went away until I joined the Ms. Gym. So I wouldn't be able to go out to restaurants. I didn't go. I always loved going to Bible study. I couldn't go to Bible study because of just the Stimulus of everyone talking. So it was a blessing to not have to worry about work. But it was very isolated. You know, I had my family, right. And I would do some things with the kids, sports, but I had to be very careful about that. I could never do those without my husband. I could never just go by myself. It would have to be very strategic in where I would sit. And so those were kind of very lonely, isolated, scary years because I didn't have the hope that I could stop things or that I would try to exercise because I've always exercised. But nothing really changed.
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A
So thankfully things did turn around for you. How did you go about finding the Ms. Gym?
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B
I found the Ms. Gem when I was recuperating from a really bad car accident we were in. And if I wouldn't have been on my computer so much, I don't think I would have ever found it. It popped up in Facebook, so I had all this time. And I'm a data analyst by trade.
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Okay.
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So I'm all about the numbers and the data. So I was doing kind of a deep dive on Trevor before I joined because I had nothing but time and I wasn't. I had a burst vertebrae, so I. And I had all kinds of injuries. So I could not exercise when I first found it. But I would watch and I would see the testimonials and I would file it all away. And then when I could start exercising that, I started doing some foot drop stuff. And I started immediately the spasticity stuff. Wow. Everything he said, it was like exactly what I have been wanting to hear and needing to hear for years and years and years. I will say the very first moment I checked into the MOC and I think I said something like, I'm a new member. Here I am. And I had all these wonderful, encouraging, kind messages back. And Jody, I don't know if you've ever had this feeling like you're right where you were meant to be. That's how I felt in that moment. Like I.
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Wonderful.
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And finally where I have meant to be, I'm just. Tears were rolling down my face because I felt like I was home.
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A
Could you say, like, a specific thing about the msgym, why you think things change for you or you think it was the combination of all of all of those things.
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B
It was a total combination. So it was the mlc. It was the Stellar Exercises. It was. And even. I mean, I'm just amazed because it was good back in 2018. And each year it just keeps leveling up and leveling up. And leveling up. And that is one thing that I'm, I'm a total all in person. So I am so all in to the Ms. Gym. It's not even funny. Like I'm in there listening. The mindset stuff that you get from Motivation Mondays, I love to go back to way back in the beginning when I joined. There's like confident in a crisis, overcoming your crisis. I mean, there are these ones that I go back to just on a loop and it keeps me, you know, fired up. And all his classes, each, it seems like each year he'll do like a different thing, a different way of teaching. He did the zoom. Everything he does levels me up. So. And you what? I watch them, I take notes. I, I feel like you can get so much out of the Ms. Gem if you treat it like the treasure that it is.
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A
One of the things we talked about on the members only corner, about people sharing their struggles, some of the advice or some of the help that they've gotten. But I, I went back and I searched your name and I searched for your post and I think this is such a great piece to the puzzle because your son's illness was such a huge part of your journey and how things started. And I saw Hashtag Victory and I saw at least two posts and they both were in regards to being part of, I think it was two of your son's weddings and that was such a highlight for you. So.
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B
Yes.
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A
So do you wanna, do you wanna expand on that a little bit?
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B
I would love to. It's. You know, in those years when they would be dating, I never believed that I would be walking around, much less dancing with my sons on their wedding day. I never believed that would be possible. I didn't even let myself hope. But then I joined the Ms. Gym and shortly after, I think it was, it was within like the year after they both got married, six months apart.
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A
Wow.
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B
And so I was able to. And I, I felt great for both of those weddings and I had these eye, I will tell this, there are these eye resets that I had just learned about doing where. The one that works the best for me when, when you get dizzy, visual resets, you blink a whole bunch. So I was, we were taking pictures up on the altar for Austin's wedding and I started feeling a little bit dizzy. So I turned around and my husband knew exactly what I was doing because I was always doing the rapid blinking. I turned around and he said, are you doing it? I said, I'm doing it. He goes, okay, I'll give you cover. So he stood in the way, he blocked me, and I'm blinking like some kind of a crazy woman. But it reset my brain. And I was, you know, I turned back around, didn't have to do any more resets the rest of the time. And it was Jody. It just filled my heart and soul with so much joy that I could be there and celebrate that huge milestone. And every time I. I see the pictures of that, I just feel such gratitude.
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A
That's awesome that you were able to be present in that. And it doesn't mean that all your symptoms were gone, but you had the tools to help reset your body. And, and you. You had the tools, but you also used the tools. And I'm glad that you had the support of your husband, who was kind of Secret Service agent there covering you. So I think, I think that's awesome. So, obviously super committed to family, super committed to the Ms. Gym. What. What would you say are your goals or your passions for the future?
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B
Oh, that's a good question. I guess I want to be able to make meaningful contributions to. To wherever God directs me. So, like, right now, he's directing me to do some prison ministry where I write letters and grade Bible studies. And I love that. But I'm starting to sense that I might be healthy enough to start serving in our church and maybe even doing something more social in the church. Now. I guess I just want to be able to serve and to help and to. I'm more of a behind the scenes kind of person. Like I always, when I would be working, I would always want to be like the number two helping the number one. So that's where my heart is, you know, that's my passion. And then also I have a new little grandson. He is my passion. He was over this morning. Another one on the way. So it's just a. It's a time of right now. This is a true time of blessings.
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A
That's wonderful, Julie. So, Julie, thank you so much. You shared about your diagnosis and your journey, a lot of challenges with yourself and your family, and also a lot of victories and triumphs. So I really enjoyed our podcast today and I know that our listeners will as well. So thank you again, Julie, so much.
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B
Oh, thank you, Jody. This has been fun. Just like two friends meeting over coffee or something. I loved it.
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A
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