Kat's Story - Living with MS

Transcript

Generated automatically from the recording, so expect the odd misheard word.

Welcome to Between Neighbors. I'm Carly. And this is Kat. Your favorite neighbors are back. Here we are, episode two. Exciting. So exciting. Happy to be here.

Yes.

Um, really, this episode is all about Kat and your journey with MS. My role this time is really just to ask questions. I've actually never heard this story from start to finish.

I don't think anybody really has. I mean, a few a select few, but I don't really talk about it, and that's why we're here and that's why we're doing what we're doing.

I am so thankful and really grateful that you feel comfortable sitting here and telling the story. So all right. Well, do you want to kick us off?

Yeah. First disclaimer: we're not doctors, I'm not a doctor. This is my story, what I do works for me, how you know everything went down. So, first and foremost, there. Also, first and foremost, I'm fine. You know what I mean? I don't want like anybody to think anything. Um, but yeah, we'll just start.

Yeah, so why don't you like just start off by describing, I guess, how you found out or what symptoms were happening, what you were experiencing that made you think, hey, something might be a little off.

Yeah. So I would say, and I know I mentioned this in our first episode. So it was 2011. I was like 26 years old. I had just had my first son, um, and he was born via C-section. Um, so he was about six months old. And I just I was at work one day and I noticed like my leg felt numb. And I'm like, okay, weird, you know. And then I'm like pinching like down my thigh, you know. I'm like, okay, that's numb. Then I went like my cat. I'm like, okay, that's numb. Then it went like up my stomach, up my back, and I'm like, okay, like something's up. So I'm like, let me call the OB because you know, maybe it's a nerve, like where they cut the incision for um the C-section.

And when I called, they were like, oh no, that wouldn't be, you know, anything. So I was like, okay, what do I do now? So then I go to my regular, you know, my primary care, who actually is a nurse practitioner, and that is an important part of this whole story. Um, because she's the only one that listened to me. So I end up going to the nurse practitioner, and she was like, hmm, that's you know, weird, you know, why, like when did it start? And again, it just started like out of nowhere. Okay. So she was like, you know what, let's do some tests, we'll find out, you know, we just want to make sure nothing's going on up there in like my my like brain, right? And again, I'm young, I have no idea. Like, I'm just like, oh, okay, no big deal. So I have an appointment for an MRI, and I'm like, I had an MRI when I was younger on my back because of an injury. Um, and I'm and I was like, I cannot be in a closed MRI, I want the open MRI. Um, and she's like, Yeah, no problem.

So I'll never forget this day. I'm at work and I get a phone call from the MRI place, and they're like, Oh, um, you know, is there a reason that you don't want to go? It's like a T3 machine. Um, we can give you something if you're claustrophobic, because that that machine is better for ruling out MS. And I was like, like a deer in like headlights, and I was like, what? And I was like, oh, okay, again, I'm just like, okay, like, yeah, I mean, that's not what it's gonna be, you know. I didn't even know what it was. Honest to God, the only person I knew was like Montel Williams, like you know, and again, I'm gonna make jokes because that's just how I am, but I'm like the only person that I knew was like Montel Williams, and I'm like, what is going on, right? So I'm like, okay, fine. I go and I get the test done. And then when you get the phone call and it's the doctor calling you, like I have goosebumps now thinking about it because I was at work in my office, and thank God I at that time I worked with like great people, you know. Um, I'm not gonna cry.

Um,

but yeah, like you get the call and it's like yeah, you know, it it is, right? And and you just think the worst because you don't know.

Um like I didn't know anything. So they never prepped you before to say, hey, it could be MS, or this is what we're looking for.

No, I just remember her saying, and again, like I had things happening even before this, and everyone would say, Oh, you know, it's anxiety, it's this, it's that. Um, I had like some fainting spells, which may be unrelated prior to all of this, so before I was even married. Um, and then I had just other things happening. Like you, I mean, I went through every test imaginable. I had a heart monitor, I was being tested for like diabetes because it's like, why am I fainting? Is my is something with my blood sugar? Like sure, everything under the sun. So it wasn't until she listened to me more, like, you know, I guess more that she was like, no, let's let's take a look at something else. And again, I just kind of was like, Oh my god, is it like a brain tumor? Like, that's kind of what you think first. Absolutely, and again, I'm fine, you know what I mean? But it just was like a big shock because now it's something that is going to stay with you, right? It's not something that you just operate on, it goes away. Um, it stays with you.

And so again, wait, real quick. So when the doctor called you, you're sitting at work, and it is was it he or she? My doctor or girl. So so she calls and she says, like, hey, you have like she breaks the news to you over the phone.

So I I I think I I should have said it differently. So it was more like, hey, we think this is what it is. Because again, there is no there is no definite test for MS. Oh, I didn't know that. Right. I should have started that. That's okay. Yeah. Again, like this is the first time like I'm getting into detail with like anybody, to be honest. Um, so it it was like, hey, the signs are pointing to this. I want you to see a neurologist. Got it. So it was like that. It was like this is what it could be. It doesn't mean that it is, but it's looking that way. And again, when the MRI place called, I kind of was already like prepared, right? Because she said, like, well, this test is what would help to, you know, see more to rule it out. So I'm thinking, oh yeah, we're ruling it out, you know, right.

And then it's like, um, hey, you know, it's kind of looking like this, so we need to go a step further and like meet with the neurologist. So in your head, are you thinking, Oh, I have it, or are you thinking I'm thinking, like, I don't even, I don't even remember. I feel like I like just zoned out.

Okay.

You know, I just zoned out, and I felt like, oh, again, like, no, it's just, you know, it's gonna be nothing, right? Yeah. Um, so I she's like, I want you to see a neurologist, and I'm like, okay, great. Who am where am I going? And she's like, he like, he is one of the best in the state, okay, in the country, really. And so it's like, you know, it was going to be very hard to get in. Like I would have to wait months. And I remember her saying, I'm gonna make a call, you know. She made the call, and I literally was seeing him like the next week. And my husband and I went to that appointment, and that was kind of that was pretty traumatic because again, he doesn't know what's going on either. You know, we just had our son, so you know, you're also thinking the worst, like, oh my god, am I gonna end up in a wheelchair? Am I gonna, you know, be able to to walk? Because again, those are things that can happen, they have not happened, thank God. Um, and that's also because of other things that my treatments and what and whatnot, and we'll talk about that too. Um, but honestly, it was just like that whole time of my life felt like a blur, you know, and that's why when we talked about like, oh, would you relive, you know, your first year of you know, having your kid, you know, child or or school, and I just like I don't know because I don't remember anything. It was really it was really a blur.

So then well, I'm sure you're trying to like process it all. You just had a baby, you're postpartum.

I'm thinking it's my hormone, right?

Or like some like weird side effects from the C-section. I could totally understand how you would think that.

Yeah, 100%. I was just like, oh, they like cut me somewhere, and now my nerve, like something's happening, and they're like, no.

Okay, so you're at the doctor with your husband, and is that when everything kind of like sunk in? Like, or the neurologist did he kind of confirm this is on us?

He's like, Yeah, okay, and like it is, but there's one more test to be done okay to definitively know, okay, and which is a spinal tap. Okay, and I'm like, oh my god, like what? You know, I've I mean I had a spinal block with the C-section, right? No, you need to have a spinal tap because that is um able to show certain proteins. Um is it proteins? It's certain cells, um, and I can't remember the word right now, but those if it shows, that means you have inflammation throughout your spinal cord.

Okay. I should I didn't really explain what MS is, but I yeah, well, maybe let's take a second and do that because I honestly I'm a little naive when it comes to it as well, and maybe a lot of people are.

I'm a subject matter expert, like asking me anything. So what it what technically is MS? So it is a neurological disorder of your central nervous system. So your immune system is attacking your nerves. Okay. So there is a protective coating around your nerves, and it's called myelin. And MS, it at your cells, your immune system attacks those that protective coating exposing your nerves. So then, and I'm gonna make a joke. There is like a uh there could be like a loss of connection from I'm familiar. Yeah.

Um, but but brain to like your body. Yeah. So, you know, sometimes I like forget what I'm saying, and now it kind of all makes sense. Okay. Right. Um, so and that's why people end up sometimes losing the ability to, you know, to walk or use their hand, or you have numbness off and on. So I have um, I was diagnosed with um relapsing remitting MS. So where you can have like a relapse and then it remits, and maybe nothing happens for like years.

Okay.

And then you can have a flare and then nothing happens, and then there's other types. So I do have the one, I guess, that is less, you know, extreme now, and hopefully it never progresses to the others, but um, but yeah, but at that time you probably don't necessarily know that, right? Right. No, you're literally thinking like I'm this is like the worst. Okay. And then I just remember um I remember having to go for the spinal tab. It was confirmed because again, it's not just one test. It's it's basically eliminating everything else, it's eliminating Lyme disease, it's eliminating other anti-inflammatory diseases. So there has to be two different things. So lesions on your brain, spinal cord, whichever, or both, um, which is me. Fortunately, I you know have both, um, and that part of the spinal tap. And then that's what ends up confirming the diagnosis.

See, that's so interesting because I feel like before my Bell's palsy, I guess I didn't realize how many, you know, illnesses there are that you basically rule out everything else to determine. So that's exactly what happened with me is they said, okay, half her face doesn't work. It's not a stroke. We're gonna do a CAT scan. Let me see what her head looks like. Okay, there's no brain tumors, no brain bleeds. Oh, let's test you for Lyme's disease. Okay, it spells palsy, you know. So it sounds like in a in a way, it's similar to diagnose something like that, you know, like you're ruling out everything, yeah. Because maybe that's normal, but I'm not a doctor, so I'm not even in the medical field, so I had no clue that it worked like that.

And now, I mean, obviously that it's happened to me. I understand like what you said, like you thought it was a show, because yeah, you you first think other things, right? You don't really know what it could end up being, right? Um, so that's how it ended up. You know, I got um diagnosed, and then from there it was like, all right, now you're gonna, you know, go on a medication. And I was like, oh my gosh, you know, there's all kinds of different things. So now you're getting all this blood work done because now you also have to make sure that whichever medication you're taking will work for you. There's certain ones that people can't take if you are positive for certain like viruses that you had as a child, which you never would have known. And of course, I'm positive for that virus that I had maybe you know, just a random cold or something, and then it stays with you. So so there's certain medications that I cannot take. Okay, right. So now I'm and now I have to go and and look at the other options, which were at first I started on like the injectables, which were giving yourself shots. Oh my god, I hated it. Yeah, I hated it, I didn't want to do it, um, but I you know I did it, right? And I had to. Um, so there's a few different different ones. And I started on the first one, it's called Beta Sarin, and then from there I would get an MRI. So now we're like, hey, oh, I hit that um.

Sorry, at least we're not pounding on the table. I like talking with my hands. Let me put my hands down. Gosh, control the hands. I um yeah, so I started on that one, and then you would, I would, you know, you'd get like your yearly MRIs. Oh now I have more lesions, right? Because they all they're comparing to the first one, which is basically your baseline.

Okay, so really quick, just so I understand. So you get diagnosed, you start on medication, you take the medication for a whole year, and then they take an another MRI. They compare that with your first MRI and say, you're either getting better or you're getting worse. Or you're staying the same. Correct. Okay.

And I changed everything. Like, I didn't eat, I didn't eat beef for a year, I didn't drink alcohol, I didn't eat a piece of candy for a year. Wow. I literally like came home and we were like, we're doing, we're doing this, right? I bet you look good. I did.

I was like, I'm mad. I lost. I was like, you know, when you have like the baby weight, I was like, that was gone. I was looking like, you're right, I lost that. And I kept saying to my husband, like, man, I gotta go back on that MSA. But at the same time, it was not sustainable. And then I think what really like almost hurt was that I had the MRI and I had all these other lesions. So I'm like, I didn't eat beef, I didn't drink alcohol.

You didn't do all of this.

I didn't have I thought I was doing so great. I didn't we I changed everything was organic. That's why I have that joke with you because I was like that. I was like, everything's organic, nothing's coming to my house, you know. And I I was so upset. I was like, what the hell?

Okay, so wait, so you go in, is it is it worse?

Or was it worse at that point? So the MRIs were but I felt I felt okay. Okay, you know, so I felt like nothing, you know, was that bad or anything, you know, I didn't feel like I had a flare. It was just like you're just maintaining like now this is what's happening, and you just have to think positively, and so I that's what I did.

And I just kind of sorry, can I ask a question? Did so did the numbness then go away?

Yeah, okay.

So it throughout the year the numbness goes away, right? So you feel like oh I'm doing good. Yes, but then you go in, and when you say an MRI is bad, does that mean there's more lesions crisis? Correct.

Okay, so now I have additional lesions. Okay. So now it's all right, we gotta switch the medication. This one's not working for you. Okay. So then I go on a different injectable called Copaxone. And then that's where I was taking that one, it was daily, and then they actually changed it to three times a week. And I remember I would take it, and then I would like skip days because it hurt. Oh like it hurt so bad, and it's one of those where it's like, hey, take it, and if you have all of a sudden flushing and like a pan, like almost like a panic attack, like that's normal. And I was like, I don't want to feel that.

And did you feel that?

No, oh thank god that that never happened, but it's like the shot itself was so painful, correct? And then every time I felt like, is this what's gonna happen? And then I was getting like welts. So you would do it in, you know, like in your um abdomen, in your buttocks, and and the side of like your thigh.

In your buttocks, sorry.

So perfect. I don't know. I was in the butt.

I was like, should I say buttons?

Yeah, in your hand. Um, and then and then I just I f I have like this like divot, and it's just like, oh my god. Wait right now? Oh yeah, it's permanent because it it can wait. I was gonna say, can I see it? But maybe not in the I have to remember even, oh my god, I think it's on this side. And actually, I don't think you see it as much anymore. It's probably filled out. Not on that organic side. But but at the same time, um, yeah, so whatever. So I know I'll never forget. We went to Mexico, and now I have to like pack these shots, and they give you like this container with like a lock and your medication thing. And I'm like, really, do I really want to be taking this like when I'm there? And I I and I was like just skipping days, you know. And I would and again, that's I don't recommend that. I I just was like, I don't want to keep doing this, I don't want to have to keep, you know, taking it. Yeah. Um so that was that was my fault there.

Um well it's hard when you have to do something every single day. One, it's painful, but two, like mentally taxing to like work yourself up to have to take it, and it's just like almost like a burden.

Right. And then we were kind of thinking, like, oh, do we want to oh, and then when you're pregnant, you get off of it.

Sure.

So um, and so this was before I had my youngest son, you know, you would get off of it, and then so that was like my excuse, like, oh yes, I don't have to be on a medication. The other thing too with MS is that when you are pregnant, I felt fantastic.

Interesting.

So throughout my first pregnancy, I wasn't having like those panic attacks, I didn't have like all the dizziness or anything. So that also was kind of a clue of something was going on. Okay, because I felt I felt great. And then when I had him and all those hormones, you know, change and that big shift. I think that's what almost masturbate.

Yeah, yeah.

Because for my MRIs, my doctor's like, This looks like you had it for a long time. Oh. So then I'm like, then I'm thinking of like everything. Everything else that it was probably connected to. And the other neurologist who looked at my mom and was like, Maybe she needs to see a therapist. Because that's always the answer sometimes. Right, right. And it's not until my nurse practitioner was like, Hey, no, you did all this, like something's up.

Something's going on. Right.

So again, I love her for that.

Um, so you were on the painful shot, and did you get an MRI then before another one before you had your second baby?

So I was on the new shot. I think it was after I had him. Okay. I started the new shot. No, I'm sorry. That was before him, and then I got I was pregnant. I got off of it, and then I was to go back on it. That's okay.

So was that shot helping? Or do you not know? So it wasn't.

So I go for another, you know, you go for your your other MRI. And again, oh, you have new lesions.

Oh my gosh. At that point you're probably so frustrated. So what can I do? And you just went through all of that pain and all of that. It's like if I would have just done nothing. I have dents in my heart. Well, not there, but like

that one hurt so bad.

I just stopped even going that way. Um, but yeah, so then we ended up um going back to the doctor, and they're like, hey, there's this medication that came out. And in between time, there was all these other medications coming out.

Sure.

My neurologist is so great. He was like, Listen, the less you take, the better. Okay. So take vitamin D, take um like a regular multivitamin, take magnesium, you know, exercise, eat well, you'll be good. He's always like, the less you take, the better. So when you start reading things like, oh, my aunt, you know, takes this, or my this, that. No, I'm just like, I'm listening to him and what he says, right? Okay, so you get off the shot then. Okay. So then there's all these new medications. Like there was a pill that came out, and he's like, you know what? It's too new, we're gonna wait, right? Like, but there's this other infusion that I think would be good for you.

So now I'm like, great, what's going on? So now I have to get all this other blood work again, like checking. I never had so many vials, I think it was 12 vials of blood taken. They test you for everything and um and to get like your baselines of what's you know normal for you. Sure. And I started on that that I was on, and it was right around COVID because that's when like everything shut down. I remember that was my second infusion, and that you I'm going in for, so there's no skipping. Okay. Okay, so there's no skipping, there's no and how often do you every six months.

Every six months. Oh, so that's quite the difference between giving your shot yourself a shot every day to then just going in every six months. Right.

And I think he also was like, hey, you know, obviously the other thing, even when I was doing it regularly wasn't working. Right. So it's like, hey, this way I have no excuse. Like I have to go there, you know, you're connected to the So what can you explain like what an infusion is? Like IV. Okay. So like, you know, people get like um even just like saline or whatever type of infusion. So it's it's just a medication.

So it's the medication like in a bag, IV, hooked up to you. You sit there, and then how long? So it was like six hours. What?

Yeah. So at first it was six hours.

So like is the bag huge or no?

So you first get steroids, um, and then like you get pre-meds, so that you don't have a reaction, and then the first time you go is slow because to see if you have a reaction. Oh, sure. So they give you and then they speed it up, but it's still overall was like four hours at that time, and then so I was on that for a few years. Okay so what it was COVID, so then it was maybe like two, three years. Um, I had my MRI, and finally I had like a stable MRI. Oh that was like a party, yeah. And I I I remember when they called me and told me, I'm like, this is literally the first time ever that somebody has told me that there's no new activity. I think one of my lesions was shrinking. Really? Yes, and so it was amazing. Yeah, so you're like, this is actually working. Correct. Where before it was like, hey, you have 12 new ones, and I was like, you know, yeah, so so I was like, great, this is wonderful, perfect. So I'm on that. And every six months I go, you go for your like pre-checkup, you get your eight vials of blood taken, you know, they're just you know, they're monitoring everything, and then I go again. Then I was able to do because I handled it well, like I didn't have you know reactions or anything like that. Um, I was able to speed it up. So now instead of like four hours, it was like three, okay, you know, and then you have observation. So I would like, you know, I have to take the day off of work, we go up there. Um, I was doing this from my old house, like I never left that neurologist. Like we were going the hour and a half to see him. Um, my husband would, you know, be in the room with me, like working. Um it so it it worked out, and then um it so then now I switched to a different medication. So even though that was working for me, there's certain cells that they look at okay, that were still not depleting. So what um the med the infusion that I was on is called ocvus, and it's a B cell um depleter, so it's supposed to deplete your B cells. So you have two like immune cells, T and B. So it depleted it depletes your B cells. Um, and I felt great, like I would just be tired, you know, whatnot after. Um, but when I would go then for my blood work, my B cells were never still like low, they were like creeping up more than what they wanted to see. Okay. And I guess it was common with a few other, you know, patients. So now I was now I'm part of a test.

Okay.

So I'm like, if it could help somebody, why not? It took a lot of kind of um convincing me to switch because I'm like, why this works? Like I feel okay. I mean, other than you know, fatigue and whatnot, like, why do you want to switch me? So they when they explained it, and when he called me, not the you know, the nurse or whoever was trying to explain it to me, he called and explained it to me. I'm like, you know what? If it can help, or if they can figure out why me and some other people don't deplete our B cells, why not?

What's it gonna hurt to try this other medication that's similar? Um that might do just the same. Okay. Um, so now that's called that's called Briandi, so that's the different one. And that one is every 12 weeks, which is still kind of I'm sorry, not 12, um, 24, which is still like it's a little less than six months, I guess.

Okay.

Um, and I still go for like the pre-check. And I just started that. So okay I had my first one in November of last year, which that sucked after just because it was new and it just kind of I did feel weird after. And then I had my second one in May, and then I go again in November, okay or end of October. End of October. Um, so coming up. So I'll like take us along the way for that. But um so in my blood work, it it's doing exactly what they wanted to see. So yes. Okay. So you have to just trust the medical professionals. It's okay to sometimes be okay with you know what the doctor says and not try to find some other well, and everyone is so different, it seems like with this illness that what works for someone doesn't work for the other person.

100%. And so you really need to fine-tune what best works for you in order to like be successful or to see results.

Yeah, and I feel like that's always I what I was saying too. It's okay to trust Western medicine sometimes when if that's the only thing that is going to work or is working for you. I mean, I tried the other thing, of course, first, like eliminate this, eliminate that, and then I was like, you know, you just then you get these other results that you didn't want to get. Right.

Um I feel like that is such a hard balance, right? Because you hear people talk about like, oh, you know, you shouldn't be doing using medicine or you should be doing acupuncture, or you should be doing absolutely, but what works for one person might not work for like my others.

My aunt's cousin, friend, neighbor, you know, she was doing this. Like, I heard it all. I'm sorry. I heard it all. Yeah, you know, I had holy water, I had all that you're lighting candles and mass every single week. I mean, seriously, hey, if it's gonna work, it could work. What works for, like you said, what works for one person may not for others, it's okay, yeah. Or the combination of both, you know, it's whatever's going to work, and I'm just grateful that I am, you know, good, right? Right. Um, I would I want to not be on anything, sure. But that was the other thing that the doctor said once was, you know, you might feel fine, and and this is just goes for everybody. You might feel fine and be fine, but you don't see what's going on up there until you get the imaging. And a lot of times the people who do feel fine, and and it, and that's kind of the other downside, is that I haven't had other um like big flares or anything like that, so it can be where you know it's kind of dormant, and then you get like that big flare, you know what I mean? Like later on down the road. Sure. And so doing the preventative, they're called um disease modifying therapies for a reason to you know slow the progression where you might feel fine, but you don't see the progression. Right. So these medications help to slow it and until it's right, until it sounds like you're like in a remission, right?

And the fact that they looked at your MRI in the beginning and said you had this for a long time, and yes, you had symptoms, but not anything like dehabilitating where you're like not able to walk or something, like you don't want to get to that point.

100%, right?

And so that's completely makes sense, yeah.

It's a lot, and I mean, as far as just day-to-day, I think for me it's more just the fatigue, so it takes me a lot longer to like recover from things like a night out, like after a book club, you know, that like girl, I was out for two days, or you know, like it just takes a long time to get back to like feeling energized again. Um, the winter's the worst too, just with like the cold. Okay. MS is a lot more prevalent in the Midwest area as well, because it is something there's a lot to do with like your vitamin D.

Oh.

Um, I don't have any family history of that. I should say that as well. I mean, you know, I feel like I'm the freaking guinea pig of my family.

Like, oh no one in your family at all that you know of, at least.

Like, no, and so it's kind of like, okay, what happened? So a lot of it could be something from childhood. It it has a lot to do with the environment, you know. Um, there's a combination of things.

I just, you know, well, and you have siblings and there's nothing there they've done or haven't experienced anything.

No, the one thing, you know, I remember when I first got diagnosed was like, hey, you know, if you have siblings, like tell them, you know, take your vitamin D. You know, get your vitamin D checked and take it. Mine was a very low. Okay. And even though I was outside all the you know, I mean, okay, maybe not as much later on, but as a child, yeah, all we did was like be outside. Yeah. 90s kids. Right. So it could have been, you know, maybe one of those childhood viruses that you get, and you know, a lot of people say it's you know tied to like mono. I never had mono.

Um, I don't know. It could have been on, it could have been like who knows what.

I know, and you can drive yourself crazy trying to think about it. And I'm not going to right, yeah.

Because honestly, there's days where I forget like that's just how I am. I just live the days and I forget I even have it. Um, I don't dwell on it. This is the again the most I've talked about it to and like ever. Yeah. Um and gotten that far into detail about it. I just I tried to not, but then that's when I was like, you know what, why not? It's like therapeutic too. Yeah, absolutely to share it and you know, you're not alone. And if it is something like call me, I'll talk to you. You know, hopefully it's not the case for people, but you know, if it is or you think something, I mean I've had people reach out to me before and say, hey, you know, I think this might be something that I'm dealing with. So yeah, I I have had, you know, conversations with people who or you know, somebody who was newly diagnosed and wanted, you know, like, hey, what did they do for you? Or what did you do, or how did you, you know, what tests did you have? Things like that. And I'm more than happy to to share and tell. But um, yeah, it's a lot.

Well, I think it's awesome that you're sharing the story because I know when I went through a diagnosis, I felt so alone, and the first thing I wanted to do was talk to someone that had been through something similar. And it's hard at first to find someone, and when you talk with someone who hasn't been through something like this, it's not like they can't give you support, but it's just a very different and you almost feel like bonded when you can speak with someone who has either been there, can offer some comforting advice. Um, so I personally think you're like an inspiration for people. Well, seriously, especially getting on here and talking about something so hard, being brave about it. This is your health and your life. And if there are individuals listening that have gone through something like this, like hopefully they can see that you can't stop living. Right. You know, you have to live, and that's why we joke and we laugh.

And yeah, it it helps. It's good for the soul, it's good for your mind to laugh about it. Maybe not about it, but just have a sense of humor because I think laughter is medicine. Um I love laughing with you too. You know what I mean? Like it just it it feels good to know, like you don't have to be like, oh my god, now it's the end of the world. That's when like misery, and I said this before, like, misery loves company. If you're gonna be sad and down, it's just gonna that trickle effect. So change it around. Honestly, again, I forget about it until it gets close to those appointments, and then now it's like, nope, still there, right? Like, I have the appointment, I have to go. There's no skipping or you know, whatnot. So it's it's been good, and I'm grateful for my doctors and my nurses and my infusion center, um, and all of that. So yeah, I never even told my kids because you know, I don't want them to worry. My older my older uh son, he does know now, but he sees how you know I'm I'm good, right? Yeah, and so I don't want to put that into my younger son's um mind right now until maybe he's a little older or something, but yeah, and that's I think you have to do what's best for your family, and I can totally see kids worrying about their parents when they're not when they're you know going through something like that.

Yeah, and I didn't want to make him, you know, think I think we told I told my oldest because I was gonna be doing the infusion thing and and being gone and you know, all of that. So um that is what because I would wait till they were in bed to do like the injections and stuff. So that was the other thing too that kind of made me not want to do that anymore. But yeah, it's um it's a lot. I'm grateful for my work too. Um I was able to work from home um even before COVID when everybody was working from home. Um, so there's a lot of stories I have just at work. Yeah. Um I had a coworker once, she had to drive me home one day because I was just like all of a sudden have and this was before I was on the new medication. It was just like all those like hormonal changes and whatnot, and I didn't know like what was going on. And you know, she drove me home, and it's just I had a really and I still have a really good circle of people, and you know, like that can make all the difference too, just having the right people around you and to be supportive and all of that.

So that's really great. Yeah, well, I am so proud of you for I mean, one, look how resilient you are for going through all of that. And when I met you, I had no idea. You're always laughing, you're in such a good mood, you're fun. I mean, I'm not saying you wouldn't be all those things, but I just mean like you really never know what someone else is going through. Right. I mean, mine's a little different, you can see it on my face,

but others, you just never know. And I think that's just another reason to always like be kind and give grace because so many people are going through so much that we have no idea about.

Yeah, that's the other thing too. When they're like, Oh, you don't look sick. Well, what am I supposed to look like? So that too, I yeah, I mean while the people are like, what's wrong with that? You're sick, girl. It's still looking real good, even from Halloween. It is looking fabulous. Well, thank you. Um, but yeah, that was the big thing too. And honestly, I don't look at myself or I I know we said like illness and whatnot, but I don't I don't put that in my head. I don't I don't say I'm sick. It's just like, oh, I have MS and I live with it and I'm thriving and you know it's I'm not gonna let it take over everything for me. Um, so so yeah, if it's an inspiration for somebody else, like you can still laugh, you can still go out, you can still and hopefully you can. If it's you know, again, everyone is different. Um, but you know, you just gotta gotta keep it going.

Right. So I think the worst thing you can do is give up and let it win, you know.

And I remember when I first was diagnosed, my older sister, because I did just have um my son, she told me she's like, you know, I I can't remember it may have been one of her co-workers too, or or again, like co-worker's mom or sister, you know, somebody that's like she's like, you know, you can still have like kids because again, that's the other thing. Like, oh my god, am I not gonna be able to have any more kids? Um, and so that I remember, um, and that stayed with me too. Like, you know, you know, it's not gonna be something that you're not gonna be able to, you know, have kids or do this or that. Now, I will say there are there were times where you know you're really tired, like where that fatigue kind of takes over.

So there are times where it's like, oh my god, I can't just like I can't go a hundred miles an hour, right? If I do, like I said, I'm taking like two, three days to to recover. Sure. So that's the only kind of sucky part of it, is that that does affect me. So the fatigue, the brain fog, stuff like that.

Okay. Well, any other closing remarks that we wanted to do?

No, I feel like I could go on and on. Oh, we did have a question in our chat. Oh, yeah, pull up the questions. See what?

So just as a reminder, on our website, we do have a little like it's a black chat looking box.

Yes.

Um, and if you click that, you can ask us a question that then we'll receive, and the next episode we'll try to answer them. So we did receive one.

Yeah. Oh, so somebody asked, What was each of your reactions when you were diagnosed? So I'm gonna assume it's for me and for you. Okay, you go. Of what you're what well, again, I like blanked out, right? Like I I like blacked out. I didn't know what was happening. Um, I will say though. And I I did mean to say this in the beginning, so I'm glad I read the question. It was almost like a sense of relief. Really? Like I I felt like okay, now I have an answer for everything that was going on, and I'm not crazy. Yeah. And it it literally was relief. It was like a blessing to know, okay, this is what it is, this is what we're gonna do, this is how we're gonna take care of it, and this is how we're gonna live life. Yeah.

Because prior to that, I'm taught it was just a non-stop like something an unknown. Yeah. So to have that sense of relief, that that's what my reaction would be. Was just like, oh, okay, now I have an answer, and then this is the plan. Sure. Definitely.

Well, and maybe maybe we'll wait till next week for me to answer that just so I can like go through the whole story because otherwise it might not make sense.

Yeah. Um that's my answer.

Yeah, I promise I will answer it, but next week I'll go through my whole journey.

And maybe now that we did talk about things, people will feel more like, hey, do you have a question for anything? The all the information I've given, like, ask. We're more than happy to answer. Um, go over it, what you're thinking, or maybe it's something that you're dealing with too.

It can totally be like random as well. Oh, yeah.

It can be about a know who does my hair. Like

or like the last one year, like yeah. Or, you know, where we got our sweatshirts. Yes. Or merch. Yes.

Um, no, but again, I think that is it's so brave of you to come on here. You've shown complete resilience throughout this whole journey. I personally think I'll speak for myself that you are an inspiration when it comes to something like that because you didn't just curl up in a ball, you fought back, and here you are today. You look fabulous, you act fabulous, and you have such a positive mindset. And I think that's the biggest thing is you're right, misery loves company, and it's so easy to fall into that poor me victim.

And and I've had bad shades. Sure, don't get me wrong, but majority of the time I try at least to right.

And we're allowed that, we're allowed to cry in the shower, we're allowed to have a bad day, but it's how you pick yourself up and you present yourself to others and you show up for your kids, you show up for your husband, for your place of employment, like all of that. Um, I just think it's really inspiring. So thank you. Yeah, absolutely. Well, the next episode will be Art Lease, yes, will be me telling um the story, basically my Bell's palsy story. So when I was diagnosed, and then everything up until present day. So um a little different than yours cat just because mine started April of this year, and now we're in August, so a little shorter, but definitely very eventful. Oh, so still important and still crazy, something you'll never forget. Yeah, life-changing actually, of course, in a way. So, so yeah, I'm really excited to come on next week and to tell that story. And again, I think I mean, I just think you're so brave, and I'm just so proud of you for getting on here for telling the story. You held it together.

Like you made a really good job. I I really like, yes, yes, because usually I'd be I got my tissues, but I held it. No, you did amazing, yeah. One of our neighbors I did break down with.

I mean, that's okay, you're allowed to do that sometimes. I know, but so so yeah, this will be released on Tuesday. And again, thank you so much for your support to our listeners because we were blown away.

Blown away. This is amazing, yeah. Like, follow our Instagram, follow our Facebook, TikTok, Facebook, you know, get on there and like the page, guys. Um Facebook's lacking a little bit. Uh we don't bite, and then our um, oh, we're gonna put it on YouTube. Yes, we haven't had video yet now, so and then everybody who's reached out and told us what they think or what you know, again, thank you so much. Yeah, keep it coming. I love it.

I know we love it so much, and thank you all for listening, for downloading the podcast too. That's it. Yeah, we are we have like we were shocked with how many people actually want to hear us speak within 24 hours. So we hope that this one does just as well. Actually, better. I it's gonna be better. Yeah, it's gonna take off. All right, well, we'll see you next time on Between Neighbors.

So little update.

We're back.

Um, so we're new at this, right? We're getting the technology down. Yeah, we're using, we didn't invest a lot to start this. Of course. Zero dollars.

We bought a couple cords.

Yes.

Yeah.

And so we're recording the video on an iPhone. We had a little technical difficulty, and so we misspoke.

There will be partial video or no video?

There will be clips.

Okay, better than nothing.

But we'll see clips of the first 25 minutes of the video. Yes. Ugh. We're working on it. Um, this is this was pretty uh devastating discovery when we stopped recording, so we had to hop back on and just let the audience know we will eventually have video, we will get this figured out.

Yeah, we are we're doing our best. We're trying our best. We're trying our best. Okay. You know, and they're like, How are you doing? Not well, bitch.

Yeah, that's how I feel right now.

Yeah.

Oh, but you know what? We have the recording. It was fantastic. We're still learning, give us grace, but I promise everyone we will eventually have the full podcast up on YouTube with video and audio together.

Yeah.

It just might be episode three, four, five.

Yeah, one of them.

Before ton. Yes. That's the promise. Before ton. So thank you for bearing with us. We love you guys. Yes. And until next time. Good night.