Bunny: 0:10

Hi there and welcome to the life saving gratitude podcast. I'm Bunny Terry and I am joined by my co-host and my producer, Johanna Medina. And today we have a guest whoJohanna knows personally. She met her, I believe during college. And, and when we started talking about having her on the show, I was surprised to find out that, um, at a young age and exactly a year ago, our guest Natalee Young was diagnosed with a chronic illness. And I Johanna I'd really like for you to talk to folks a little bit about how inspiring you found Natalie, even before we talked to her.

Johanna: 0:49

Yeah. I mean, like you said, I knew Natalie before from college. I mean, I've known her for quite a while through a mutual friend. And, um, even though we're not, in touch as much anymore, she's very, um, visible and active on social media. So, you know, just like how everyone is now, we kept up that way. And I remember about a year ago now she was posting a lot about, you know, being in the hospital and trying to figure out what was going on. And then she found out, um, that she had Ms. And just to see she's very, I like she says in the episode it's very, I think helpful to her and helpful to others for her to be sharing her story and kind of taking everyone along in the journey of her diagnosis and being real about it and being honest about what her symptoms are like and when she has bad days and, and then how she takes care of herself in between those. And, also, I think I've also been following Natalee because she is y ou k now, she's a woman in science she's been working on the front lines of C OVID. So just to k ind o f see both sides of that and to see not only how she's dealing with it and working like she has worked crazy hours during the pandemic, and then now having to take a step back and take care of herself, but also knowing that her work is so important to her. And, I just, I just love her. She's just a real person and she's going through a really tough thing. And, and it's for the r est of h er life. I forgot to mention on the episode, I love, sometimes on her Instagram page, she'll show her little pill box and it has a, it has a sticker on it that says, u m, h er pill box says not old, just stick forever or something. It's ju st l ike a little label on her thing. Maybe I'll post a pi cture o f that. It's just funny, cu z s he has like a good sense of humor about it. And, but she's again, just honest and I think we do talk to a lot of people on the podcast that have, y ou know, again, chronic illnesses or diagnoses like cancer. I mean, that's why this po dcast g u est g ot started. So I think she wa s a really great guest and I think our, u h, y ou know, our listeners are gonna really love her story.

Bunny: 3:15

Well, and I think she's, she's a perfect example of, of, you know, the idea that stories save us because she's, I mean, she said she's sharing and she's meeting people all over the world who are, um, not only touched by her story, but inspired to keep going forward even when they have a similar diagnosis. So it's changed her life to get this diagnosis. But boy, is she thriving? I'm so excited that you introduced us. She's a great guest. So I would ask our listeners to stick around. She has some really funny ways that she copes and I love the fact that she has named, um, her illness and um, just you're, you're gonna love this one and um, just wanna thank you one more time for showing up for subscribing for reviewing us and for being a part of this. Thanks for checking in. Natalee. We are so excited to have you as a guest. I, you know, generally as not as a rule, but I would say predominantly most of the people that I talk to on the lifesaving gratitude podcast are, you know, people who have lived this long life, you know, people in their fifties and sixties and it's such a privilege today to get to speak with somebody who is not only a friend of Johanna's our producers and my daughter, but also someone who seems to me from following you on Instagram and reading your bio. You, it seems like you've lived quite a lifetime in your very short life. This is we, and we've spoken with guests before who have been diagnosed with chronic illnesses and then learned amazing ways to deal with them. And so I understand from Johanna that this is sort of an auspicious date because tomorrow is a year from when?

Natalee: 5:25

From tomorrow being my diagnosis-anniversary of multiple sclerosis for one year, I have been diagnosed with this.

Bunny: 5:36

Well, Natalee, I mean, I'm looking at you on this screen. How old are you right now?

Natalee: 5:41

I am 30 years old.

Bunny: 5:43

Wow. That's... 30 years old is young at least in my understanding for, um, for a diagnosis of this type. I'm really interested. You know, we always, we say on the podcast all the time that stories save us. And so I know that the story that you're gonna tell is gonna help to save somebody else or, or help for them to figure out how to make their life better. But can you just give us a quick, and it doesn't have to be quick. I'm sorry, but just give it, tell us a little bit about you. And then I wanna hear about, whether getting diagnosed was a real challenge. I'm curious to know, because I've found that doctors tend to say to younger people, you know, it's not that big a deal. I'm interested to hear how that all went.

Natalee: 6:35

Yes. Uh, 100%, everything you're saying is accurate and so true, but a little, just a little background about me. So, like I said, I'm 30. I actually was born and raised in Albuquerque New Mexico, which I think is great buddy, cuz I know that you are New Mexico native, which it's the best state ever hands down, hands down. But I have just a background about me. I have lived a very adventurous kind of free spirited life. I left home when I was 18 to go to college and I kind of just hopped around different locations from Illinois to Kentucky, to Nashville, where I met my wonderful husband. I moved back here in 2017. So I've done a lot of different things in my life. You know, sports. I actually worked at a camp with kids that have a lot of different medical issues. So I've had a very at a young age in college, a very active, experience working with really young kids that have muscular dystrophy or sickle cell, our physical disabilities. So I have seen that, in my wife's time. So I think that I have really was starting to be prepared at a young age to see how kids that should never have to go through this kind of thing, went through it and thrived and still lived their life. So that was, has been really helpful for me. But I think in terms of my Ms and the diagnosis of it, it was a mix of, there were maybe I would say maybe in 2018 or so I was starting to have some symptoms, but I kind of pushed them aside because, you know, oh, it's probably just a sports injury or this or that, but in the back of my mind, I was always a little worried because, my half sister on my dad's side, she has a MS. So I kind of was always in the back of my mind, worried about it, but I kind of just pushed it aside, tried to not, you know, stay on Google, searching stuff for hours. But then, um, I told my primary care doctor, um, the symptoms I was having, it was kind of a weird symptom when I try to explain it, it's called Lamit syndrome. So when I move my neck down, like my chin to my chest, I would feel electrical shock, go down my spine. So pretty scary. And when I say it I think I just got so used to it that when I say it out loud, I'm like, oh, that's actually very scary. Like I ask my husband, I'm like, do you ever get that? He's like, I've never had that<laugh>. So I told my, my primary care doctor about it and I told her, you know, I'm nervous about this. I think I need to see a neurologist. And she was great and she gave me a referral, but then fast forward to 2019, me and my husband got married, so everything got pushed back. I didn't do anything. I never saw a neurologist and then fast forward to 2020, and we all know what happened. Mm-hmm<affirmative> so, yeah. So it's been kinda, uh, a long journey before I got to where I got to in 2021.

Johanna: 10:02

Were any of the doctors, um, kind like Bunny said, like, oh no, you know, it's probably just like, like you said, like some other injury or, oh, you're probably getting migraines or something. Like, did anybody brush it off or do you feel like the doctors were really, um, you know, good about checking up on that?

Natalee: 10:19

I think that's such a great question. I think that I got lucky because my primary care doctor is really good. So she also knows that I deal with anxiety. So she was like, you, I don't think you have it, but let's go ahead and get, take you to a neurologist. So you can just not be anxious and think that you have it. So she was really good with that. And to be honest, I got very lucky because I've always been really healthy. So I never really went to the doctor or tried to try to get things taken care of. So I didn't have to go through a lot of doctors. And then I think I got really lucky, which I'll share with you guys, you know, my diagnosis story was, it was so intense that it was pretty undeniable. That that was what was going on.

Johanna: 11:03

Yeah. I definitely wanna hear more of your story cuz I was following you online, obviously I've known you for a long time, but I was following kind of what was going on on Instagram. And I remember even texting our mutual friend Alexia and being like, what is going on with Natalee? Like, and, and I remember just being so scared for you, so yeah. What was, what was that like for you in, in the moment kind of, you know, take us back.

Natalee: 11:32

<laugh> yeah, no problem. So it was terrifying actually. Um, it started when I, um, so it was last year and I had, so to go back a little further during COVID I was on the front lines of COVID. Um, so I was, so I work as a medical laboratory scientist. So anytime you got swabbed, it was coming to me and I was running your test and I was telling the doctor what to tell you.<laugh> so very stressful, very exhausting. And I actually got recruited to go help at another startup lab to help their molecular department help them run. So I did that for a while and then it was a startup and it wasn't really going in the direction I needed it to go. So I went to another job and it was kind of one of those things where we, I just needed to find something because my husband got furloughed from COVID. So I was really, you know, using my degree and my knowledge to make sure that we were had an income. You know, he was doing a great job, started a business from home, but we needed to have, you know, insurance and all of those fun things that I realized you need to have as an adult. Um, so anyways, so I was working at this job that was a terrible fit and I was working graveyard and it was the most stressful job I've ever worked in my life. So my anxiety and my stress was already so high in my body, cuz I was like, this job has to work. Like I just left another job. This has to work. But my body was like, no, it's not gonna work at all. We're not gonna do this job. So that's what initiated my first flare up. So I was at work late at night and I was in the bathroom and my entire right arm went completely numb, um, for about a couple of hours. So, I sat on the bathroom floor, literally holding my arm and only being able to feel it, cuz I know I have an arm, um, and just sobbing, crying and just feeling so scared. And it was also the right side of my face was also numb, but it had been numb for about five days. And again, with me being really strong willed and really never being sick, I was like, oh this is normal. It was not normal. So I left work. I could not pull myself together. I came home to my husband and literally he, I was, I cried myself to sleep and I'm like, babe, we have to go tomorrow. Like, and it's one of those things where he was kind of like, well, where do we go? What do we do? Cause it's not, it's invisible. You know what I mean? It's not this thing of, oh, I'm bleeding or my arm is broken or whatever. So he's like, okay, we try to figure it out. So we got up the next morning, we go to urgent care and you know, or you know how urgent care is you sit there and they get you in and they're like, let's run an x-ray. And I'm like, I don't need an x-ray<laugh> but let's run it anyways. So it was kind of one of those things where I had to start advocating for myself very quickly. And um, I got really fortunate and very blessed because there was a nurse there. I told her, I said, I need an MRI. Whatever is going on with me is a lot deeper than anything. You can just see looking at me. So she told me and I wish I knew her name cause I really want to go thank her. She told me to go to a specific emergency room in Albuquerque and she said, they will do all of the testing. You need go there and they will get everything done. If you think you need to get an MRI, they will do that for you. So I said, thank you so much. You know, they let me go home cuz they're like, you're healthy. You're fine. Pay us whatever the price is for this urgent care visit.<laugh>, so then go ahead. Go ahead. Yeah.

Bunny: 15:23

Well Natalee, I'm so curious because if I were to have those symptoms and I went in, they would say, oh my gosh, you're having a stroke. Did anybody say that to you?

Natalee: 15:34

They did not say that at the urgent care they did not say anything about a stroke. Yeah. They were just like, oh no, you're you're young. You're healthy. You're beautiful. Everything is fine for you. It's like, no,

Johanna: 15:49

it's not what pat you O n the head and send you off?

Natalee: 15:50

<laugh> yeah. Like you're fine, honey. You just, this is just anxiety and maybe a muscle cramp or whatever. Yeah. But exactly buddy. That's exactly how I felt. Cuz it was like, and you hear that. Right. So even my husband's like, well babe, how do we explain this more? Is going to the ER, actually gonna help? And I was like, I dunno. I was like, but hopefully they will. They will do more for me in an emergency type situation than an urgent care. Right. Same thing. I was like, whatever's going on is not normal. At this point I was still thinking maybe MS. But I was like, am I having a stroke at 30? You know, all of that stuff. So we wake up early the next day we come home, wake up early the next day to, you know, be the first ones at the ER, mind you, this was also all during COVID too during a wave of COVID. And I'm like, oh, let's go to the emergency room. And you know, in my background, I know everything. I know all the truth about what's going on. I also know that I don't wanna have to take up a and make the nurses more exhausted when there's a pandemic going on. But I was like, I have to. So I go and I go in and they see me right away. They admit me right away. And I tell'em they my symptoms and exactly what bunny said. They were like, they didn't say this, but they're like, you're you have a stroke. We need to do a CT scan on you immediately. So they take me back, they run a CT scan on my brain and they're like, yeah, your CT scan is really abnormal. Um, it's showing a ton of swelling in your brain. We're gonna need to do an and I'm like, okay, perfect. I got what I wanted, but also yikes, I, this whole time, because my husband, he can't go back with me because of, so I just in there by myself and you know, I'm just hanging out. I'm trying to update my husband on everything that's going on. I'm you know, trying to be in this area with my mask. And I hear people around me that are sick and I'm just, you know, my empathy. I'm like so worried about everything that's happening. Like at one point they literally were going to, they were rolling me back to get an MRI and I'm like, oh I can walk. It's okay. They're like, you have to, you have to be in this wheelchair. If you fall, we will be sued forever, sit down and just be quiet. So, you know, but anyways, so we go, we get my MRI. And so the first MRI they gave me was just of my brain. So they get my MRI of my brain. I come back and I'm just, you know, rusting relaxing. And then the fact, the fact that I knew was gonna be serious is they roll in a like a screen for a teleconference, with a neurologist. So mind you again, I'm by myself. And I said, um, before we do anything, I need to at least call my husband. So he's on the phone with me. Yeah. So, my neurologist, he's really great. There's not a lot of neurologists in New Mexico. Um, so they had to do like, um, what's the word where you have to go outside of the state for this. So they call him and he comes on the screen and he.

Bunny: 19:01

Well, they just had to do a consult with somebody else, right?

Natalee: 19:04

Yes, exactly. A consult to be like, we need a neurologist to look at this and tell her what's going on because we don't know, this is not good, whatever it is, please tell her for us type of situation. So this whole screen comes on super kind. Neurologist dude basically gives me my Ms. Diagnosis, um, from the ER, while I'm in the ER bed with my husband on the phone to tell me that I have Ms. And that they need to keep me overnight for at least five nights to, um, do more imaging and also to put me on very intense steroids, cuz the amount of swelling in my brain was like through the roof. Yeah. So then I'm there and I'm like with this kind nurse who's like, and I think I'm in shock. You know what I mean? Like I'm in shock, but I'm also like this weird kind of piece cuz I kind of thought I had this, but I didn't think it was gonna be like this. Do you know what I mean? So she's there with me and she's trying to console me and I'm like by myself and I'm like, oh my gosh. So yeah, it was crazy. And then it kind of just got crazier throughout the time. So they rolled me up and this is, this is dark humor, which is oh yes, yes.

Bunny: 20:29

I just wanted, I mean that's, I mean, I can't imagine how that was for you. And you had a, a bit of an inkling because your half sister was also diagnosed with Ms. But can you, you know, just for people who may not have a knowledge about what Ms is, what the condition means and I know your background is in science, so, so can you, I mean, if we're talking, if we have a listener, who's like, I don't, I don't even get it. I don't even know what it, what causes it, what it means, what, you know, what part of your brain yeah. You know, what's going on in your brain when you have MS. I had the same question. Cause I'm kind of one of those people<laugh>.

Natalee: 21:17

Yeah. And it's one of those things too, where you don't really think about it, right? It's not something that you, it's not a, a classic thing. Like it's not like cancer where, you know, you know, people that have had that, that's just more common. It's extremely rare. So I think the best way to sum up with what multiple sclerosis is, is it's literally a disease of your central nervous system. So not only your brain gets affected, but your optic nerves, your whole spine, you know, cause it's a whole system, you know, here's your brain. And then here's your spine. Everything involved in that is gonna be affected by it. So basically how it works is you have everyone, as humans has, you know, a nervous system, it has nerves that make everything so easy. Like if you wanna move your toe right now, you can move it. And you don't even think about it just because you have those neurons that are constantly sending messages to one another to make sure those things happen. So what Ms does, is it attacks the Mylan, which is a protective sheet that's around your, your nerves. So when that happens, it makes it, so those messages can get altered or be delayed. So kind of my best way to kind of look at it is everyone's had seen like a freight cord, like a cord that's connected to a, a system up to an outlet and those are afraid. That's kind of how a mess looks because you know, it messes up the, the signals to make sure the electric signals are moving to where they need to go. So that's kind of how it works for people. And it's, it's very rare. Like if you Google it, it's gonna say rare, but it still affects about two to 3 million people in the us. So it's pretty serious.

Bunny: 23:04

So it is... I mean, just so you know it is. I have several cousins who have big been diagnosed. I mean, I have huge family, huge family. So there, I do know people in my family, but it does. I mean, it seems that the medicine is getting, I hope more and more advanced. I mean, I know people who were diagnosed when I was a child and, and I, so I'm interested to know, when you were diagnosed, did you immediately start some regimen of treatment that started to make a difference?

Natalee: 23:43

I love that question so much because I think immediately is a, not as immediately as I should have cause America healthcare system love it here.<laugh>, it's amazing. But, kind of a background story on that, cuz this is, this is, uh, also very dark humor, but kind of one of my favorite stories. So I go to the ER and one of my favorite parts is they roll me into a room that was literally quarantined off. I'm not even kidding. You guys. Like the whole area had like, you know, the white stuff with the caution tape, just quarantined off. And I'm like, this is fun here. But I got lucky that I got my own room<laugh> that I didn't have to pay for. It was amazing. But anyways, so they rolled me into that room and I'm just laying there, you know, resting, they put me on a very intense steroid to help the swelling. And you know, once I kind of come to my husband comes and sees me for a little bit, can't stay with me, but sees me. And um, I'm like the doctor's like, you're gonna have to stay here for at least six days. And I'm like, no, I'm not because I don't have the money to stay here for at least six days. So, you know, I had to start advocating for myself and I say, I wanna talk to the neurologist that diagnosed me to see if I can take an oral steroid instead, you know, at home. So, you know, the, the doctor right away, he was like an internal medicine doctor. He's like, oh, that's not an option. And I'm like, oh, I work in science. That's definitely an option. You could definitely give me an oral steroid. So anyways, I'm rambling. But anyways, so I get onto the video with the neurologist and he's like, no, I totally get it. You know, stay here for one more, two more days to get the high dose of, you know, the steroid through IV. And then you can go home and I'll give you steroids that way. But my favorite part was when he looked at me and said, wow, you are doing so much better than I thought you would be doing. Oh, thank you so much. And I think that that really, um, you know, looking back on it now where it's like, you should be a lot more disabled than you are. You should not be doing this well. So I think that really right away kind of got me thinking, oh, this is a lot more intense than I realized how sick I am. You know what I mean? Because by this point I had learned that I have, um, about 15 to 20 lesions on my brain. Yeah. And I have about 12 to 15 lesions on my, uh, cervical spine. At that point, I had already learned that and I was like, yeah, you're right. I should be not doing this good. So we, we finally get discharged from the hospital and you know, the main thing is you need to seek, you know, help immediately basically is what they're saying. Like finding neurologist immediately, blah blah. So my husband and I go into panic mode and we're calling every person that we can, you know, the UNM neurology center, anything we can find on Google, that there is a neurologist to try and excuse me, to try and find somebody while I am. You know, they say, you need to see someone immediately because I think what you were saying, buddy is like, you need immediate treatment and we could not find anybody for at least, gosh, two months before I found my neurologist, it was about two months. And to be honest, the only reason I was able to find someone that quick is cuz my mom works for Loveless. And that's where my neurologist is. She works as a scheduling person. So she was able to make sure I was on the wait list. So someone would call me, that's the only reason why I saw someone so quickly, but same thing. As soon as I met my neurologist, he said the same thing, wow, you're doing a lot better than what your MRIs are saying. You should be doing. Like I figured your husband would have to carry you in here and you would have to wear an eye patch right now. You know, it's basically what he's saying, because that is kinda the progression of MS. You know, it leads you to severe disability. I saw something really interesting about MS. That it is the number one non traumatic disabling disease. So I think that's kind of, you know, in the sense of you didn't get in a car accident and end up disabled, it's a progressive illness and it's not traumatic, mentally traumatic, but not physically traumatic. Do you know what I mean? So that's kind of the hard part about that. So the thing about that is immediately, he was like, you need to get onto a DMT, which that's a disease modifying treatment. So it's not gonna cure me. It's not going to do anything to make my Ms go away, but it helps it to be more stable. So I would say that also took a long time because I was in between jobs. We had to try and find insurance. Um, I wasn't working my husband, we didn't have insurance through him. We had to go and find insurance to start getting these, these drugs. So right away when I first met my doctor, my neurologist, he was like, you need, these are your three options for your drug. I think you should really do this one because COVID is still very active. You know, all of these conversations we had. So I didn't get that until September is when I started taking my, my drug. And yeah. And so I got diagnosed in, may saw my neurologist for the first time in July and then because of insurance and all of that, I didn't start taking my drug that I desperately needed until September.

Johanna: 29:28

Yeah. That's so crazy. I mean, of course again, all I can think is like, yeah, America health system, like you said. Yeah. But it's also crazy. It's crazy to me to think as terrible as you were feeling, and you're having all these bad symptoms and you know, and you're, you know, debilitated in a way, and then the doctors are saying, that's good. Like you're doing better than they think. Like, that's so scary to think, like you said, you should have been doing worse, but also thinking the way you're feeling is actually, oh, that's relatively good for someone with MS.

Natalee: 30:02

Yeah.

Johanna: 30:02

That's, that's crazy.

Natalee: 30:03

Wild, right? Yeah. Finally, I think I was so delusional cuz I would say my flare lasted the flare plus all of the, you know, the diagnosis and everything, all being together that lasted for about three or four months. And I think that I was just so like delusional that I would say that and like humorously and finally my husband's like, babe, stop saying that like that is not funny. Like it's okay to bring it up, but you can't say that every day. Like that's really hard for, for him to hear, you know, things like that.

Bunny: 30:34

Yeah. Well, but Natalie, don't you? I mean, I don't know. I don't, you know, you and I have not been introduced before this, but wasn't that a little bit of a defense mechanism for you that you, that you sort of mentally and emotionally needed to deflect? I mean, it's so frightening. I mean, I know that we Johanna and I made jokes all the time about, you know, play the cancer card, you know, get outta that final because your mom's got cancer because sometimes you can't, if you get, if you think about it too seriously, you'll just sit in the floor and cry. I don't, I don't know. But that is that how it was for you.

Natalee: 31:11

That's exactly how it was for me. For the first time in my life, I was so depressed and I did not know how to handle that. I have always been a very joyful person and to be depressed, I was, I was so scared cause I didn't feel like myself and that scared me a lot. So yeah, it was a defense mechanism and I was yeah. Holding onto anything I could to just try and protect myself to do exactly like what you were saying, you know, whatever it was like, you know, I'd make me and my husband we're full of dark humor. We'd make those jokes all the time. Not right away. But like now we're like, well, we can get out of that barbecue just in case, you know, you're you do What I mean, let do it too much. If we say I'm having a flare that I might, let's just say like I need to rest, which is very true. But yeah, so we, dark humor has been the only way for us to, cope with this really intense, intense, very serious diagnosis.

Johanna: 32:15

Mm-hmm<affirmative> well, and I do know from following you, and you know, being your friend and following you online, you do take such good care of yourself and you make it a priority. It seems from what I, what I can see that like, you make self-care a priority. So was that something, I mean, I know you might have done some of that before, but did that intensify obviously with your MS or like what, and what is your self-care and how has that kind of evolved?

Natalee: 32:44

Yeah, I love that question. So I think, I think that, so my self-care, I think it definitely, uh, has evolved and intensified because I can, I can't do anything to stop my body from attacking itself. I can't, I can take, uh, my infusions. So I get infusions every six weeks, um, for my Ms. And I can that's it. I can't stop my body from attacking itself besides doing that, but I can take care of myself in other ways, you know, I can make sure I I'm doing good things that make me feel good. You know, I'm spending time outside and I'm eating really good food that I like, and I'm sleeping a lot and I'm trying to remove or limit the amount of stress I let into my life. Because the one thing that I have learned from my previous flare up is stress is what really causes me to have a flare up. So I think those are things that I'm really trying to be sure that I, I can do that for my Ms. Um, I gave her a name. Her name is tingles because one of my symptoms is sometimes I'll just feel really tingly in my feet. So again, a coping me mechanism, I give her a name to be like, Hey, you know, I see you. I know you're scared. I can make you this really good food to help you, that kind of a self care thing. Um, I, I love thank you. Thank you. Yeah, I think it helps me a lot. Um, I know it sounds kind of crazy, but like you, you can kind of get it, right. Like<laugh>, mm-hmm<affirmative> so I think.

Johanna: 34:25

It makes it kind of it's own thing. Like it's not like it's Own thing.

Natalee: 34:28

Yeah, yeah. It's a part of me, but you're gonna do your own thing and I'm gonna try and help you by, you know, being as healthy as I can and giving you medicine because medicine is important, but you're, you're your own thing. I can only try and help you. As much as I can.

Bunny: 34:47

Natalie, I think that's brilliant. I mean I wouldn't have thought of that, but I think to, like Johanna said, your MS is some, it doesn't define you. It's just, it's there. And you have to, you know, you have to take care of yourself and you have to deal with it, but you don't have to let it be the central piece of your life. It's. And so I think by almost giving it, it's giving your, giving your Ms. Its own name and speaking to it and kind of takes the power away. When you said that it gave kind of gave me goosebumps because I thought what a smart thing to do for somebody who is so young and so new to this disease. And hang on. If I say the wrong, if calling in a disease is the wrong thing, you tell me...

Natalee: 35:42

That's right. Wrong list. That's it's a disease. It is no you're right.

Bunny: 35:47

So I, I just had, um, we we've had a previous guest of Tania Katan and she's my writing coach. And she, last week we went through this intensive and she made me create a list. And I thought this was, was kind of brilliant. She made me create a list. My don't do list, like what I don't want. And she's, and it's also in a book that she wrote, she talks about it, but I thought how it sounds like you're doing this, but she created this list of things you don't wanna do. You know, you don't wanna overextend yourself. You don't wanna agree to things that you don't wanna do. I mean and the cool thing is you're you, it's not cool that you were diagnosed, but it's cool that you've already learned how to say no to things that are not essential in your life. And so, and she said, create your don't do list and make a copy and burn at least one of them. And say, these things are not gonna exist in my life anymore. I'm not gonna do stuff that SAPs my energy. I'm not going to eat stuff that makes me feel bad. I'm not going to make choices. That aren't the best choice for me. And it sounds like you're doing that. Am I right?

Natalee: 37:00

Yes. That's exactly what I'm doing. You gotta tell me about that book. Give me the name so I can read it.<laugh>. That is what I'm trying to do. And I think that, that I have to give a lot of credit to my, my sweet husband, because he has tried to help me start creating boundaries in my life. Um, when we first started ma started dating because I have always been a yes person, rather it be with my friends, with my family, with my job. Sure. I can work, uh, those extra hours knowing I can't, I've always been an person. And my husband for a while now has been really great at trying to help me set up boundaries. So I think that he has been my, um, my everything, and I think it would've been a lot harder for me to start setting up those boundaries with my Ms if I didn't have, because I've been working on trying, doing, doing that before I got diagnosed. But I think that's exactly what you're saying is my, my, myself and my body means so much to me and my health. And I can't do a lot for it, but I can make a list of things I'm gonna say no to no, I'm not working over 40 hours a week. No, I'm not going to do this activity. I don't want to do it. And it's given me a lot of power in my Ms. Um, that I think is one of the most important things that you have to have with Ms. You have to have that power and that agency over yourself in your life, because there's a lot of things you don't have control over tomorrow morning. I can wake up and I could have trouble walking and I might have to go to the yard. We don't know. So I think that trying to have those little things that you can have control over your life is so important for any chronic illness and any anybody that is healthy also, you know,

Johanna: 38:43

Mm-hmm,<affirmative> that, that, um, I love hearing about, you know, how Corey is such a big support to you, your husband. And that was kind of, one of my other questions is, um, you know, to tell us about your support system. I know like your family's there in Albuquerque too. And has, has that having them and your husband there played a big role in kind of helping you get through, you know, the initial, this, this first year of your diagnosis. Sure.

Natalee: 39:09

That's such a good question. So I think for me, um, one of my defense mechanisms for me was like, everybody leave me now. I'm gonna be a burden. Don't talk to me, leave me, Corey, leave New Mexico, get out of here, leave me here, die. You know what I mean? Just lose my mind over that. So that was really hard in the beginning, but I was able to flip that switch by reaching out, um, to people on social media. I have made so many friends that have Ms all around the world, like people in Australia, people in Germany, just to not be alone in my illness, because I felt so alone because I couldn't get a doctor. I, I didn't even know if I was gonna be able to work. I didn't know if I was gonna be able to have insurance, all of these things. So I reached out to community and I shared my story on, on Instagram and my community blew up. Like it got to the point to where I had so many people, rather it be my sweet sorority sisters that decided to make what's called pod squads for me, where they would come alongside me for each infusion and send me a gift or give us money for food, or even that going back to other things, you know, my, I talked about that center for courageous kids. I had people that I worked with years ago that came alongside me and just would send me cars, our encouragement, our gifts, and having that community was essential for my health and for the beginning of my diagnosis, because I had to force myself to not let myself feel like a burden and not share my story. Um, and if I, if I didn't do those things, I honestly don't know where I would be today. If I would have shared my story and let people come side me,

Bunny: 40:58

I, I think, uh, you know, BNE brown talks all the time about vulnerability, but even before I knew who she was, um, I made a choice when I was diagnosed with cancer to just tell everybody, you know, some people want, some people feel a need to keep, to stay really quiet about whatever their health issues are. But I do think there is real power in sharing and Johanna and I both learned that it was when we got in a community of other people when we got in an advocacy community of other people who had the same diagnosis. It's I gotta tell you, it's kind of like naming, you know, naming your Ms. It's meeting. Other people kind of takes the power away and it makes you feel like, wow, I'm, I'm not crazy. I'm I'm okay. I'm gonna survive. These other people are also alive. I it's, there's so much power in that and good for you that you've shared it. And that you've made this part of your story online, cuz I you're, you're helping people that you don't even know about.

Natalee: 42:05

Thank you. I really appreciate you saying that. And I think that, um, both of those things combined for me, it kind of started off as, as a thing of like, I have to do this. Cause if not, I'm gonna be so depressed and I, I don't know what will happen, you know what I mean? But it was also a thing of like, why am I hiding that this is no reason to, to hide what's going on? And I want to be able to help people. I wanna be able to other people with chronic illness to see this and reach out to me if you want, you know, cause my background, as I told you before, was helping kids that are really, really sick and that community is, was so important. So I didn't really have to go through this thing of, well, I don't know if I should tell these people or not, because I've seen the power of community. I've seen the power of community coming together and loving these people that are going through really hard things. If there's so much power in it.

Johanna: 43:00

Yeah. That's, I, I love that. And I know, um, that that's, you know, happening in real time. I know even this morning I saw, you said that somebody has reached out to you and you know, that they were recently diagnosed and you know, you've inspired them and, and they know that they could come to you and ask questions and talk about it so

Bunny: 43:20

Well, yeah, it's amazing. And what is the quote, Johanna read the quote that you sent me that, um, um, about community. I I'm sorry, I'm trying to get it on my phone and I can't<laugh> but it's something that Natalie had put, oh, that chronic illness is a full time job. It's a community action, a way of life it's carrying on it's enduring and it is unendurable. I, I mean, it is a full time job, but it is a community.

Natalee: 43:50

Awesome. It is. And that's the only way it will work. I mean, it really is. Um, one of my other favorite things. So, uh, I met community through, um, I, so when I first got diagnosed, I was like, I need a book.<laugh> like, I need something to read. I, oh my gosh. So I went to Barnes and noble and I got, I just went to the section of like, what is it like health and wellness or like, whatever it is. And I just looked for books. So I found, let me pull it out to make sure I don't get the name wrong. So the name of the book is what doesn't kill you. And the, honestly the artwork is what got me on the book. Cause I was like, that's a beautiful artwork and I'm happy to get this book. So I read this book and it's all about a life of chronic illness lessons from a body in re result. And it's from someone named te Miller. And um, that's the first book I read when I got diagnosed and it's about Crohn's disease. And I literally, I was like, I'm gonna find this person on Instagram. I'm a stalker until she becomes my friend. So I did that and it worked, I don't recommend that for everybody because you might<laugh> might and not be a good situation, but she's, she became my friend. Like she, we, we text and she is a part of my community. Haven't met the girl once, but I read her story and I know what she's going through. And she knows what I'm going through because I shared my story and we became friends, not the same illness have never met, but that community is so important and so crucial. And I know that's hard for people, right? Like, especially if you're, I'm very extroverted, but I'm also leading into being an introvert because it's a lot easier shout out to my husband again. Um, for, for letting me know that's okay. I also have a very wonderful, beautiful family. That's full of extroverts. So, you know, you can see the dynamics there, but being able to just reach out is so important and so needed. And I love that I'm able to help people, you know, Adriana, what you were saying about the story about, um, someone that is going through their own illness right now, this person literally got onto Instagram just to reach out to me to say, Hey, I feel alone. And I feel scared. Please come alongside me. And I, I would do that for anybody. And I'm so glad that she reached out to me because that was one of the other main reasons why I shared my story was so people didn't feel alone because I felt alone in that hospital room, by myself in the middle of a pandemic. And I was laying there without my husband, you know, just being able to text him. So that's why I started immediately being like, Hey, I'm really sick. I need you guys to let me know that I am not alone.

Bunny: 46:39

Well, we talk all the time on our, on the podcast about gratitude. And I, I mean, just spending this little bit of time with you, it's really clear to me that you're a very positive person, but has, has, um, do you feel like that's had a, an impact on how the disease treats your body and how you treat it? I'm just kind of curious. Yeah.

Natalee: 47:03

I think that's such a good question. I haven't thought about it a ton, but I also asked some friends on, uh, Instagram, you know, Hey, remind me, like, be sure, you know, tell me, be sure you bring this up on the podcast. And one of my friends did bring that up kind of about, you know, talk about how you've lived in your life and how you're defying odds. Like two neurologists told you, you're doing way better than you should be doing. And I think gratitude is a big part of that, to be honest. Um, I've always been a really mindful, thankful person. And even in the smallest ways, you know, it doesn't matter what it is. I'm thankful that I ha especially now after everything that has happened during a pandemic, all of the loss and the grief and the just terribleness, um, I think it's made a life full of gratitude for me be even more, just larger little things. I'm grateful that I can drink water and I can drink coffee and that I feel safe where I live and that I have love in my life. And I think that those things really alter, um, I don't know, I don't have the science behind it, but I think it really alters your brain chemistry. And I think it alters everything in your life to really be able to live fulfilled even with the chronic illness.

Bunny: 48:31

Well, there is science behind it, so<laugh> perfect. Um, I mean just, you know, I, Yeah, we, yeah, we, we luckily, uh, it's, I mean, we're not the experts, but we've had some experts on the, on the, um, podcast and it's really clear that people who, um, I mean, even if, even if you're not in the midst of a chronic illness, um, it, it change, it does change your neural pathways every time you think about every, every time you're mindful, first of all. And then every time you think about something that you're gratitude, you're grateful for. So, um, you're doing all the right stuff, but I'm, I'm, um, you know, one of the questions that Johanna had written down that I was really interested in is whether you had found that there were all these images on, in like in media about Ms. That were untrue. I'm, I'm curious. And I, and I'd like to hear, you know, like what, what's the real truth about having Ms.

Natalee: 49:40

Sure. I think that's a really good one. So this is actually one of my<laugh> favorite things. When I first started, you know, trying to find community and I used all these hashtags, like chronic illness, visible illness, you know, all these, one of the most hilarious things that I found was people will actively try and pry on people that are weak. And I saw so many people sit trying to promote like a herbal medicine or something that not only will it cure your Ms. It will cure your cancer and your herpes and your HIV all in one pill. That's probably the first thing that I saw in me and my husband. It got to the point to where, like, you know, I would actively block them, report them, all this stuff. Cause I felt so bad for people that maybe don't have a science background are so scared that they're like, I'm gonna send$700 to this random person to get a placebo pill. What, so I think that was the first myth that I really saw a lot of was thinking that there was a cure for Ms. There was not a cure for Ms. And I'm heavily a heavy believer in science. I love science. I work in science. Maybe one day there will be a cure. And I hope that I can help that whether it be in a clinical trial or maybe I'll work in the lab that does Ms. There's not a cure for Ms. And I think that is one of the, the myths that can be shown. Um, and I think that also, that's one of the hopes that can be shown, which I'm a hopeful person. So I'm not trying to tell anybody what they're doing is wrong with their Ms. Ms. Affects everybody completely differently. I am this sick and I'm able to walk and work and talk and see and do all of these things. Other people can't do that. Some people can't do those things. So I think that it's the biggest myth that I worry about. Like I said, people who don't have, you know, that are really weak are really, um, don't have a science background that there is a cure for it, cuz there's not a cure for it at this time.

Bunny: 52:02

And yet you can live a really full, productive, happy life. I mean, I have a cousin who is my age and she was diagnosed when she was 35. And I have to tell you, she's one of the happiest people I know in the world. And so, um, you know, she's just, you know, lived this life with some medication. I mean, I mean, obviously free. I think, I don't know daily, man. I, I honestly don't know what it's maybe

Natalee: 52:29

Cuz there's so many different drugs. So like mine, I take mine every six weeks in infusion, but um, the drug I'm on a lot of people get the same drug every four weeks. But my neurologist does every six weeks just to kind of mitigate all of the very scary, you know, side effects or risk factors, but there's so many drugs. Yeah. I have a, really one of my favorite coworkers. She also has a mess and she has to do a shot three times a week. So there's all these different things and she is also one of the most happy, most wonderful people I've ever met.

Bunny: 53:01

Well, so do you think that, um, that that's been part of the, I mean, is, do you think your life would be the same today? Um, if you had not had this diagnosis, I mean, is there tell me how life has changed for you other than you're on this medication every six weeks?

Natalee: 53:20

Yeah. I think that that's a really good question. I think my life has changed a lot because of it. Um, and I, again, I wanna go back to the gratitude thing that you were saying just because I, I am a super loved person. I am a super supportive person. I'm able to walk, I'm able to do all these things with my Ms. It's easy for me to be grateful. You know what I mean? And I think I just wanna talk to people that don't have that, um, that their health is really bad or they don't have a really loving support system. You know, family, a husband. I think it's hard to find those ways to be grateful. It's easy for me to find ways to be grateful. But I think for me just to go back to what I was saying about being grateful, if you don't have those things, you just have to find them, you have to work a lot harder to find them, but it's so, so, so fulfilling when you do find those things because I, cause it does change your life 100%. Um, so I think for me in terms of how it's changed my everyday, I think that I have been even more grateful because I'm on this drug that is helping me. Um, I, I don't, I didn't know if I would be able to work. Um, I went through a really dark time with my husband. Um, you know, just being the main breadwinner, whatever that means for the household. He works, he does a great job, but you know, through my job, we have insurance and a steady income. Um, I was so afraid that I wouldn't be able to work. I wouldn't be able to do all of these things in my life, but I have found that I've been really fortunate and really blessed that I'm still able to do those things. And I think it is because of the drug that I'm getting. But I also think that I have learned how to slow down a lot more in my life. I have learned how to ask for help a lot more in my life. Um, I have learned to rely on people and not be as independent as I've always been like literally, always like since I was two. Um,<laugh> so I think that has given me a lot of really good lessons in how to slow down and how to listen to my body and how to be like, oh, Nope, don't do that. You need to go to sleep. Nope. Don't do that. Your body does not like that. Um, and also being patient and more graceful with myself. Um, one of the symptoms that I have not always, but is pretty intense is, uh, cognitive things. So I get brain fog. So like trying to like, remember how to say something at any given time, I'll be like, babe, what's that word? You know, just start snapping. And he's like, we weren't even talking. I don't even know what we're talking about. Come on, you know, it, come on. You know, so just trying to have more grace with myself and being like, this is just your new normal. Yeah. And you're still yourself, but you, this is just your new normal, you can still live, you can still laugh and you can still, you know, be who you are. And I think that, um, it's taken a year for me to really feel that way. And some advice I've gotten from other people with Ms is you kind of figure it out. You're like, oh, this is great. I can do this. This is no problem. Then you have a relapse and then you're sick than you were before. And you have to, you have to learn how to do it again. Um, but I think that I have been really lucky in learning how to do it in the way I have in a very dark time on the planet.<laugh> yeah. So hopefully whatever comes will be, I'll be able to handle it. You know what I mean? Mm-hmm<affirmative>,

Johanna: 57:00

Mm-hmm<affirmative> yeah. Well, Natalie, I mean, you're such an inspiration, I think, um, I I'm so happy that I know you and that you're, and I'm so happy that you're sharing your story because I think it's gonna help people, obviously it already is helping people, but, um, whether you have a chronic illness or you just, or not, or you're just kind of going through a hard time, I think your, your positivity, but also being real is, is just what we need in the world.<laugh>

Natalee: 57:29

Thank you. I appreciate that. And I appreciate you saying, you know, not just the positivity, but being real, like mm-hmm,<affirmative> I cry all the time. Like I I'm super positive, but there might be a day where I'm at work and I have to go to my car and I have to cry because what I'm going through is so real and so scary. And I think that's also a really big part about gratitude too. You know, having a healthy level of gratitude, not being grateful all the time. Like if you need to go cry and have a breakdown and not be so grateful this week, you could do that too. Mm-hmm<affirmative> you know what

Johanna: 57:57

I mean? Mm-hmm,<affirmative> be, yeah. You're honest about it. Yeah.

Natalee: 58:00

I try to be, because I, I just think that's important because I don't. Yeah. I, I don't want people to have to, um, hide who there are in a chronic illness or just in life, you know, always, always being who you are. And I think that's really important because who you, who are you hiding from? Who are you? You know, not being honest for, you know, mm-hmm<affirmative>

Bunny: 58:22

Well, Natalie I'm, I'm so grateful that you chose to, to spend this hour with us on this weekend. That's a, it's pretty momentous. I mean, you're you, tomorrow is your what'd you call it your diagnosis anniversary.<laugh> diagnosis, anniversary.<laugh>

Natalee: 58:39

Cause I was like, anniversary's too happy.<laugh>

Bunny: 58:42

And well, and it's a mixed bag. I mean, you, it, it would be great if you had not been diagnosed with this chronic illness, it'd be great if I hadn't gotten cancer and Johanna hadn't deal had to deal with that, but boy has it. Um, it, I mean, it just has created this whole different path in your life. That you're, when you said I've learned how to ask people for help. I've learned how to give myself grace. I thought that that is a whole nother hour that we could talk about. And you've learned that at this age. So I'm, I mean, I celebrate you. I know that it's not an, it's not a happy anniversary and yet it is because you are, um, I mean, you're just, you're just becoming more of who you are at such a young age. So I celebrate you. Thank you so much for joining us and being a part of this. Can we talk to you again next year at this time?

Natalee: 59:36

Yes, please. You, you two are fantastic. And what you're doing here, I think is so important at all times, but especially now, um, with us still being in a pandemic, um, and just everything that's happening happening on the planet is just really heavy and hard in a lot of grief. And I just think what you're doing is so important for people to, to hear stories and to be inspired by people. If it's not me, anybody, all of these other people that you're interviewing, I think it's so crucial. Thank you. Well, thanks

Bunny: 1:00:11

For being a part of that.

Natalee: 1:00:13

Yeah.

Bunny: 1:00:14

That's all we've got today. Friends. I wanna thank you for joining the life saving gratitude podcast with your host bunny Terry that's me and my producer and assistant Johanna Medina. We feel like we're in the business of sharing the stories that save us and we hope you'll share as well by letting your friends and family know about the podcast follow and like us wherever you listed. And please take the time to leave a review, whether it's a stellar comment or a suggestion, we are open to suggestions all the time. Also follow us on Instagram at live saving gratitude pod. You can also follow me personally at bunny Terry, Santa Fe. You can sign up at my website, bunny, terry.com to receive weekly emails about how to become the ultimate gratitude nerd. Thanks so much for checking in.