A (4:00)

What is it for? For myself and for others that don't know. What is a biologic medication?

B (4:06)

Well, can I use the name brand? Can I tell you the name brand? Is that okay? It was Enbrel, and it was the injectable medication. And I think it acted on T cells. Was it T cells? Because it's. It's a different cellular action than what the Ms. Medications act on. So I started absolutely fabulous. I felt better than I had in years. I didn't have fatigue, I didn't have pain. I was able to enjoy activities outside again. And I thought, this is the greatest thing ever. That was in 2011. It didn't take long before I started having more weird symptoms. My very first weird symptom was itching. I itched all over, couldn't figure out why, went away. Then I started having some visual symptoms, and I would be on the treadmill, and it was like somebody dimmed the lights. And then as soon as I stopped exercising, it was fine again. And then I started having some really bizarre accidents, like rolling my ankle while I was hiking because I thought I tripped over a route. I didn't trip over anything. Now I know it was foot drop, but I had no idea at the time. I had a bike wreck. I. We were riding on a trail. I hit a big rock. Everybody with me said, how could you possibly not see that rock? I didn't see it, had no idea. I couldn't water ski. I'd skied my whole life. All of a sudden, I didn't have enough strength to get up. I blamed the boat, I blamed the driver. I blamed everything else in the world. Had no idea what was going on. My balance was. Was wonky paddle boarding. I struggled with that again, something else that I had done forever. And none of this happened all at the same time. So it Wasn't like I could put all the pieces together. I started dropping things. I had no idea what was going on. The visual symptoms gradually became more prevalent and got a little bit worse. And in 2013, I woke up one day and my pupils were different sizes. This can't be right. This is not good. So I went to my eye doctor, and he examined me and proceeded to tell me that he was absolutely certain that I had a brain tumor. Yeah. And side note, my life was falling apart at the time. My. My marriage, my. Just. Everything was just really not in a good place. And I just didn't have the emotional bandwidth to deal with anything other than a brain tumor. So I had the mri, and they only looked at my brain and said, there's no tumor. And I thought, sweet. Moving on. I just didn't have any. Like I said, I didn't have the emotional reserve at the time to do. To explore the possibility of anything else. They did see some spots like four, and they seem to be pretty inconsequential. Nobody, none of the doctors were concerned about him. My rheumatologist said, you know, I can't tell you that you're never going to have ms, but I don't think you have it today. Great. Moving on, as it turns out, you know, I really wish that. That number one that we had looked at my spine, because who knows what that would have looked like in high, you know, hindsight is 20 20, and it's not. I can't. I can't go there. I just can't stay there. But that was 2013. So I went on, and by 2015, my visual symptoms were worse. They were happening much more frequently. I was limping because the foot drop was much more. Much more impactful by then. And I couldn't hide it anymore. One day I was at work and somebody asked me if I was limping, and I thought, all right, I'm gonna have to. Gonna have to do something about this. So I went to my family doctor. She ordered an mri. This time we looked at my spine as well, and my brain still looks great. Spine was a mess. It was a mess. My C spine and T spine were absolutely full of lesions. And so at that point, we knew. We knew what it was about. The official diagnosis in February, when I saw a neurologist and he confirmed what.

A (8:21)

We knew was it a bit of relief getting the diagnosis, like, to kind of understand what was going on. It's still pretty earth shattering.

B (8:30)

Yeah. There was that whole, okay, I'm not crazy. There really is something going on. And I think that I didn't know what I didn't know at the time. So I didn't know that this was going to completely alter my life at the time. And maybe there was some bliss in that. The really sad part about it is that the medication that I was taking for rheumatoid arthritis, they immediately pulled me off of that and said, yeah, there's some research shows that this actually causes Ms. Oh, no. Fabulous.

A (9:06)

So devastating.

B (9:08)

So all of my doctors are certain that my Ms. Was probably triggered, at least triggered by that medication. And, you know, it. Again, it doesn't do any good to look back. It doesn't do any good to dwell in the wh. Ifs and the shoulda, woulda, coulda. It's hard not to say if, okay, if I done things differently in 2013, if I. If we had looked at my spine, if. If we had pursued those few lesions on my brain a little bit more, if we had. The minute that Ms. Even emerged as a possibility, if we had pursued that more, number one, I wouldn't have taken that medication for three more years. And number two, maybe I could have started treatment earlier, you know, but again, it doesn't do any good to dwell on the past. All I can do now is just.

A (10:05)

Move forward, you know, and that's such a hard thing to do, especially with ms, the what ifs and if onlys. And like, just this is. I'm just hearing your story for the first time, and I just think about when you said in 2013, your life was kind of falling apart and. And what a relief it was to put things on the back burner. Like, I think what you said is true. You didn't have. You didn't have any bandwidth to try to deal with any of this.

B (10:33)

I really didn't.

A (10:33)

I don't. It's so easy with Ms. And stuff to put blame on ourselves, but I don't. Just like I said, hearing your story for the first time, I'm just like, like, wow. Like, to deal with that much stuff and then to try to look back in retrospect and why didn't I figure all this out and stuff. Like, you're. You weren't able to do that because you were just trying to survive what was going on in your life outside of your medical stuff.

B (10:59)

Off. I really was. I was. I was surviving.

A (11:02)

Yeah.

B (11:03)

Yeah.

A (11:04)

So they. They give you this diagnosis and then what's the next step after you get the official diagnosis?

B (11:10)

Then one of the things I learned, really, from day one of this is that I have to take charge of my health, of my path forward. I love my doctors. My medical team is fabulous. They've changed some since my initial diagnosis, but I've never felt uncomfortable with my medical team. But as good as they are, they're not case managers. And I have to advocate for my. Have to be the one who's informed. I have to be the one I have to. To be. I heard in another podcast, the Squeaky Wheel, to a point, you do. You really do, because nobody's going to do that for me. And so when I. When my family doctor first hypothesized that this was ms, she said, I'm going to get you into a neurologist. Well, I expected to get in within, you know, a week or two at the most. When they told me it was going to be four to six months, I about lost my mind. What I. I have this horrible thing, and you're telling me that. That I just have to sit and wait. So I actually made it a practice of contacting this urologist on the regular. And finally I just went to their office and said, I'm here. What can we do? And sure enough, that.

A (12:31)

That did it.

B (12:31)

I got the appointment, moved up. And so instead of four to six months, it ended up being two. So that's. That's better. Immediately started. I think a Boggio was my first medication, and he told me he and my rheumatologist both said we have to treat the Ms. And the RA together. So I think at the time, there were maybe 12 medications on the market, but there were only like four that would treat the Ms. And the RA. And I'll be honest, I'm not. I don't completely understand the medical reasoning for having to do both together, but that's what they told me, and I didn't question it a lot. So I did a Baggio. Didn't have great results with that. I think I went straight from that to Ocrevus. I was one of those people on Ocrevus that really, it worked beautifully for about the. I mean, it's what's supposed to be every six months, I think. I think for me, it worked beautifully for about three or four, and then I tanked. And I felt horrible for those last two months. We even moved it up so that I could get my infusions, like, at four months or whatever. Still not enough. It just wasn't. I just didn't have good results with that one. So I switched to key symptom, and I've been on kimpta for about the past three years, I guess. Three or four years. Love it. I absolutely love it. I love the ease of it. I love that I don't have any issues with it as far as side effects or any problems like that. I don't experience that gap in between treatments, which is phenomenal for me. Has it changed my life?

A (14:21)

I don't know.

B (14:22)

I don't know. I mean, I don't know what life would be like without it. I don't really want to find out. So that's where I'm at. Treatment wise.

A (14:30)

It sounds like you've found a good fit and I'm glad that the doctors, you know, you eventually found people that would work with you and would listen to you when you said, you know, like when you talk about the crap gap, you know, having. That's what they call it.

B (14:44)

Yeah.

A (14:44)

In between. So I'm glad that Kacimta was a good solution for you. So your journey, you know, you started back in 93 with, with getting these symptoms that you know were from rheumatoid arthritis and then they did the treatment in 93. Were you, you said you were newly married. Were you involved in schooling or career or where was your life heading at that time?

B (15:09)

I had just graduated with my master's degree and had just started my career as a speech language. Speech language pathologist. Easy for me to say. So, yeah, I feel like my whole adult life was just starting.

A (15:26)

Okay. And, and how did you know, Obviously the, How did the rheumatoid arthritis or. And then eventually the Ms. Diagnosis. How did that interplay with your career?

B (15:38)

The RA diagnosis really didn't. And it was just something that I just learned to live with. I just learned to live with. Oh, wow, okay. The pain's back, you know, and I just, I just pushed through, I guess the, the one thing that it did for me, which in hindsight, God's providential hand of provision, I did sign up for a long term disability insurance policy at work when I could, when I didn't have to do a lot of, you know, any of the medical testing or whatever. That was years and years ago. Lo and behold, this past April, I needed to enact that policy. So that, that really honestly probably was the biggest thing.

A (16:31)

That that's. It is a blessing to be covered by disability benefits for sure.

B (16:37)

Absolutely.

A (16:38)

Yeah. So where has, where does life look like from diagnosis at 2016? And then you've been on several meds and on Kimpta doing well. And then just this past year, you, you left work. What else has been going on in your life over the past few years.

B (16:58)

In 2017, I got married to the absolute most wonderful, wonderful man on the planet. As far as like he, I could. There's no way that I could have designed a better support partner than he has been. We are in this together. And he knew fully good and well when he chose me what he was getting. So I'm so thankful for that. I have found the most wonderful, wonderful church family and the support that I received there is just amazing. I obviously have experienced some decline, quite a bit of decline actually, since things started. But the school system that I worked for was very, very accommodating. There are many accommodations that we put in place that helped me work as long as I did. And really, honestly, Jodi is just figuring out, you know, what can I do? I don't need easy, I just need possible. And so figuring out, okay, I can't do this like I used to. What can I do? How can I do, you know, what, what supports do I need? What, how can, how can we. We make life keep going?

A (18:10)

That sounds, that sounds great. It sounds like it's been a process of learning for you too. I'm sure having grace with yourself in dealing with all of this.

B (18:18)

For sure.

A (18:19)

What kind of symptoms did you have that kind of led to you leaving work? Like what was it fatigue or was it vision or what was it that made it not possible for you to continue on?

B (18:29)

Yes, all the above, really. The. It had just gotten to the point where even with all of the accommodations and there were so many, I mean, my school system was so gracious to me. I had been able to. My classroom had a bathroom in it. I. Let's see, I'm. I'm just thinking I had a designated parking spot. The biggest thing was I had the coolest three wheeled stand up scooter you've ever seen. And you know, my balance was still okay and I didn't need to sit all the time, so. So we found this amazing three wheeled scooter and that became, that became basically my legs at work. My kids at school thought I was a rock star. They loved it. Oh, Ms. Moy, that's so cool. It is. And you know, I still get comments of that is the coolest thing. And my response is, usually if you got to have a disability, you might as well be cool.

A (19:34)

Can you, can you share what brand it is? I think people might.

B (19:37)

Yeah, I will. I'm on my third one actually, because I wore the first two out. The first two that I got were the brand E Wheels. And I know now that that is actually kind of a knockoff brand of the original, which is, is the Triad brand. And I would direct anybody to try out's website. It's not great for everybody. It's not right for everybody. But for me, it was and is still my absolute favorite mobility device that I have. And I think I have them all. Okay. But I love it. But that, that honestly is what KE probably two to three years longer than I would have been able to. But just, you know, they put a phone in my classroom, they changed my responsibilities as far as having to travel to other schools for different, different meetings and whatnot. Most everything was held at my school so that I didn't have to travel. Just very, very accommodating. But it had just gotten to the point for me this past year where even with all the accommodations, it just wasn't enough. I would come home in the afternoons and barely be able to get in my car and make it back in my house. Certainly there was absolutely nothing left for any, any home activities after I got home. It was just too much. It was. And I realized that as much as I loved what I did and I, and I do, I, I loved my job. I loved, just wasn't at that point the cost outweighed the benefits and I decided I had to make the decision to leave it.

A (21:13)

For sure, it sounds like it was a very difficult decision, but the right decision because horrible.

B (21:18)

It's an awful decision.

A (21:20)

It's not nothing. No job is worth your health and, and you know, watching yourself decline. Yeah, you know, it's, it's obvious like what you think, what, what is it that I'm putting out here? Like I'm giving so much, but I'm losing so much too.

B (21:36)

Yeah. So it was just, it was just hard. It was hard to manage diet, it was hard to manage stress. It was hard. That was impossible. It was hard to manage having time for exercise. It was just, it was hard to manage a healing lifestyle with the full time job that was very, very demanding. So I needed, I was to the point that I needed to make a healing lifestyle my full time, full time gig.

A (22:04)

So you mentioned exercise and of course this is the MSG podcast. So how, how and when did you find the Ms. Gym?

B (22:11)

You know, I'm typically not a huge fan of social media, but this was one time when the Facebook algorithm actually worked in my favor. Trevor kept popping up in my feed and you know, for a long time I just scrolled past. But then finally I thought, you Know, what is this all about? And so I listened, and I don't even remember now what I. I don't even remember now what it was, but I was hooked from day one. From the minute that I heard, I thought, you know, the more I researched it and the more I looked into it, I thought this, Everything about this aligns with my faith. It aligns with my value system. It aligns with what I believe to be true. Scientifically. Everything about this just lines up for me. And I was hooked. Like, I was hooked from the beginning. So I think I found him in, like, the end of summer, and I joined Black Friday weekend. So it was pretty quick.

A (23:20)

That's awesome. For those that don't know, we have this group on Facebook. It's for pay members. It's called the Members Only Corner or Members Only Community. And I, I kind of creep it for whoever I'm interviewing for the podcast. So I came across few of your posts. So I just wanted to ask you. There was a one post and you were talking about having desire to travel, maybe go on a cruise, and you were asking for advice or help. And so I'm curious, did that ever pan out?

B (23:49)

It did. We went on our first cruise this past summer and went with some friends from church. And just side note, my village at church is strong. I mean, they, they. They truly are my village. And we, we went together and absolutely had a blast. My sweet husband, I said, my wheelchair needs its own passport. My sweet husband pushed me all over the Dominican. He pushed me all over San Juan. I mean, we just went. We went everywhere and just did. We had a fabulous time.

A (24:20)

Obviously you used mobility aids, but I'm glad to hear that it didn't hinder the experience that you, that you got out there and did it. So that's fantastic.

B (24:28)

We did. We did. I was a little sad that I couldn't do some of the excursions that I wanted to do. I am an outdoor active girl through and through. I mean, you know, like I said, my earliest symptoms I noticed impacting hiking, biking, walking, you know, those types of things. And Ms. Has taken a lot of that away. But again, how can I still do the things that I love to do? I may not be able to do all the fun excursions, but, you know, we can absolutely wheel around, wheel around the city, you know, or whatever. So figuring out what I can do.

A (25:03)

It is hard that life with Ms. Does involve a lot of loss and trying to process and grieve it. And then also, like you mentioned before about not getting stuck in Things that we can't change and do anything about. So everyone's on a journey with that and it feels like it comes around all the time. One of the other posts that I read that you put up, which made me chuckle because I think we've all experienced that with, with having mobility aids is you were, you were out. I, I don't know if it was hiking a trail or something and you had, you had this fantastic scooter and you were met with all sorts of cheeky comments trying to like be funny or trying to connect with you about, oh, I wish I had one of those or I need me one of those to keep up. And, and just that your sentiments about like you try to be grace filled and be kind, but sometimes it just gets too much and you just want to like basically land base the person who says the comment.

B (26:01)

Yeah, you know, I just, I, I do. I always want to be grace built. I always want to be kind. I mean, I just, I want, if I have to have this disease, then I want there to be good to come from it. And I want to be, I want to be a blessing to other people. But I think that probably is one of my most frustrating things is when, you know, somebody out running on a trail or walking through a crowded store or whatever looks at my scooter and I'm so thankful for it. I am. And I know it comes from a good place. It does, you know, but they look at and go, man, that's cool. I need me one of them in their best East Tennessee accent. And I think I will gladly trade you two legs that work for, you know, you can have it right now if I can get off of here and walk. And most of the time I just think it and smile and nod and move on. That particular day was a little, little more challenging. I'm not proud of it, but that's been a big challenge for me.

A (26:59)

I think that's part of being human and I think that's part of dealing with the loss and grief. It is hard, I think for myself because I'm in a scooter or a wheelchair whenever I leave the house. And getting those remarks sometimes is so hard. Like even, even in the airport, you know, and people like watch you, like there is benefit. You do get to go faster in all the lines. But sometimes people make comments like that and you're like, like you think, okay, they don't fully understand. But I'm like, if you knew the depths of grief and loss and things that I've, you know, lost out on in life. You know, I, I would be glad to not have this and I would be glad to wait five hours in the line standing up if I could.

B (27:41)

Exactly, exactly. I would gladly choose what you have versus what I've, what I live with every day.

A (27:50)

So what kind of, what kind of goals or, or plans do you see for yourself? I know that we can't, you know, we can make our plans but they don't always work out. But what would you like to see in the next few years or what are you working towards?

B (28:04)

Honestly? I think right now, Jody, I'm still in that. Rediscovering myself as a non working person. My. And I'm honestly, I'm such a nerd. And so I write down everything that I do during the day as far as like exercise and you know, whatever and I, I really, really am trying to spend the majority of my time with movement, with mindset training, with. Trying to be an encourager to other people maybe through the members only corner or whatever. So I don't know. I still don't know what the next chapter is going to look like for me. I still don't know. You know, in ter. I'm not to a point yet where I am comfortable volunteering for anything or even, you know, even taking on some things at my church. So I don't, I don't know. I, I really don't know what the next chapter is going to look like. But right now I'm pretty happy where I am embracing this new healing lifestyle.

A (29:09)

That sounds great that you're, you're accepting. It is what it is right now. But you're leaving yourself open to opportunity and it, and it's commendable too. You know, you said it was just like this past April or May that you went off. So you haven't even been off for a whole year. It, it is kind of. You're trying to figure out what life looks like for right now. So it's, it's actually good that you're not pushing yourself too hard because there's a reason you left work because you know, you needed more time to focus on yourself. So expanding yourself in other areas is not always the best option.

B (29:42)

And I, I don't think I really realized how bad things were. I don't realize. I don't. I, I pushed every day because I had to. I was using a ridiculous amount of compensation, you know, just to, just to get through the day, just to get from one place to another, you know, in my classroom or you know, to get into the bathroom. And once I didn't work anymore, once I wasn't working, all of that sort of boiled to the surface. And I thought, oh, wow, how in the world was I doing this? How did I work as long as I did? I have no idea. Just literally, literally the grace of God to get me through every day. And so it's been kind of, kind of eye opening and a little bit, I don't know, maybe a little bit sad to realize how bad things really were. I just didn't realize it. And so I think just to realize, gosh, I'm really starting at square one with this healing process. So just giving myself the grace to be able to go back, to reconnect and to basically start all over again and say, you know what, I'm starting this from a new place. I'm starting this with a new mindset, with a new lifestyle, with a new, you know, a new focus and let's see where we go. But yeah, I really, I really had to go back to the beginning because I just didn't realize how bad things really were.

A (31:01)

And that's a good perspective to hear coming out on the other side of it. Just, just enough. What would you, what kind of advice or what kind of words do you say to someone? I'm sure because Ms. Is so common that you run into people that have Ms. Or you hear maybe from your church, family or even in the members only corner, people that are newly diagnosed, like, do you have words, you know, that you feel like are helpful or advice like things that, man, if I Knew back in 2013 or 2016, these are what I wish someone had told.

B (31:37)

Me, then the very first thing that I would say to somebody, and actually I think I have said this is work on your mindset as intentionally and intensively as you work on your physical body. That is something that, that I absolutely love. Love in the MSGM is Trevor's mindset trainings. And I've had jokingly say I've had lunch with Trevor every day for the past two years. You know, I think that mindset is critical, critical for our healing. I wouldn't be where I'm at if my mindset wasn't where it is. I mean, I wouldn't be where I'm at physically if my mindset wasn't, you know, if I really hadn't focused on it. One of my favorite Trevor, Trevor quotes that I actually have on a sticky note in my workout area is what you think about, is what you speak about, is what you bring about. And I think you know, out of the overflow of the heart, the mouth speaks. And so without a doubt, work on that mindset, Work on your heart, work on, work on what you can't see just as much as working on what you can see. So that would be, that would be my number one piece of advice. My number two piece of advice is don't blame everything on Ms. My latest pursuit is really trying to understand the role of hormones in Ms. And I think that I've sort of been living in a hormone cesspool for a couple of years now and I've blamed it on Ms. And so it's time to say, you know what, this might actually be something different. And I've heard, I've heard our wonderful admins in the MOC talk about that before and nothing could be more true. Don't blame everything on Ms. There might be other reasons. And then I guess my last piece of advice would be just face this disease on your terms. One of the things that, that I really wanted to do was to work until I decided that I couldn't work anymore. I wanted it to be on my terms. Don't be passive. Be your own advocate, be your case, be your own case manager. Figure out what works for you and embrace it. If a three wheel scooter, scooter works for you, great. If you need a different mobility device, embrace it. Don't hesitate to use what you, what tools are available and what you need to use. Make it work for you, but don't be passive. That's, that's probably my biggest piece of advice.

A (34:10)

That is fantastic advice. So missy, I hope you will keep us updated on your progress in the members only corner and be posting about what's going on in your life.

B (34:22)

Absolutely. You'll probably hear from me in about three weeks because I've got a wedding coming up. My oldest daughter is getting married at the end of February and then my youngest a year from now. So I've got two weddings in my future but they've been amazing because both my girls are so very supportive of me, even going so far as to, you know, take my mobility needs into consideration when they chose their wedding venues, my dietary needs, you know, the menus and they are always sending me gluten free, dairy free stuff and my future sons in law could not be more, more proud and excited. They help and support whenever they can and it's just, it's a big blessing. It's just a blessing. So yep, you'll be hearing about that soon.

A (35:05)

I'm sure that's wonderful. I can't wait to see pictures and just hear about the victories that, that you have while you're there. Like, I know the excitement of that will be a fire under you to to get moving and and everything, but it's wonderful to have the love and support of your family and that they're so willing to accommodate all your special needs.

B (35:27)

Absolutely.

A (35:29)

Missy, I could talk for a long time. It looks like our time is up, but thank you so much for meeting with me today.

B (35:35)

You're welcome. Thank you so much for having me.

A (35:38)

Thanks for tuning in to another episode of the MSGYM podcast. You can find more about the msgym on Facebook, YouTube, Instagram, and@themsgym.com.