Danielle McNair Breaks Down Her Hardest Moment. Ms Warrior #48

[ wouldn’t even wish you’d understand. I just wish that God had a better plan. I’m so confused. I need a redo. A redo. There’s something that’s inside of me that’s begging and begging and pleading. I just want to feel free. I just want to feel lovely. I’m surrounded by love that’s in pain. Can I wipe your tears away? Please don’t hurt me. I hate that it’s for me. Oh, I hate that it’s for me.

Hi, welcome to the MS Michigan Man 64 podcast. This is a podcast all about chronic disease awareness, what it’s like living with chronic diseases. Um, my name is Brian. I have been diagnosed with MS since 1997. In 1992, I’m playing in the Rose Bowl for Michigan against Washington. And then five years later, I get hit with this diagnosis. I’ve been living that life ever since. I talk about my journey as well as the journey of other chronic disease warriors all over the world just to try to help people understand what it’s like um going through that diagnosis, the mental

mental part of it, the family part of it, and the employment part of it. Today I am talking to an MSer that I met on TikTok um quite a while ago. We’ve been friends for about six, seven months and um we met in lives and she is just amazing. She’s originally from New Mexico and um and then she ended up moving to Georgia. So she lives in Georgia now, but she was diagnosed with her MS in 2023 and she wanted to come on

and talk about her journey. Please welcome to the podcast, Danielle. How you doing today, Danielle?

Hi. I am doing well, Brian. Doing well today. Today’s a good day.

That’s good to hear. You know, I know we have good days, we have bad days, and you know, it is what it is. Danielle, so Danielle, in 2023, you’re getting told that you have MS. Um, what was going on in your life at that time that, you know, came to that point that a doctor’s telling you have MS? What kind of symptoms were you having that threw up the red flags to go see a doctor? Something wasn’t right.

Um, well, in 2020, I had gotten married and then probably a month after my wedding, um, I got COVIDVID, and COVID, you know, every 8 weeks it seemed like I was dizzy. You know what I mean? like I would just have dizzy spells and um I would go to my doctor and she would send me to a specialist, you know, like I went to ENT and I went to audiology and I went to all of these specialists and then she was like, “Well, let’s do an MRI of your brain.” and she sent me to a neurologist and went to the

neurologist and he told me when he diagnosed me that I had um some kind of brain disease, right? And so, you know, Google, I looked it up and it told me I was going to die in 6 months. So, I was like, “Oh my gosh, I’m going to die.” Um and then you know six months later because I was January uh here I am diagnosed with MS um

because I had an exacerbation in May. Um me and my mother had actually went to Jekyll Island for my job and at that point I was using a cane because it was difficult for me to walk. Uh my balance was off. Um and I came back and I exacerbated.

Um did you did you did you understand what MS was when when that doctor told you you had MS? I know back when I was 27 and I got told that I had MS. I was like, “Okay, great.” You know, now we know what the problem is, but I didn’t even know what MS was. I didn’t even understand that it was chronic. I’m like, “Okay, well, give me a pill and let’s get rid of this thing and keep on moving.” And then I What was your understanding of MS when that doctor told you that, Danielle?

When they told me I had MS, I had no clue what it was. And you know, I feel sad about it because my uncle had MS and my mom would tell me, “Uncle Michael has MS, right?” And I just didn’t think enough of it cuz I didn’t feel like it was a big deal. You know what I’m saying? Like cuz my mother didn’t make it seem like a big deal. Um, so when the doctor told me I had MS, I, you know, like diabetes or some kind of other disease that’s controlled, I was just thinking, okay, well, I’m just going to have dizzy spells every here and there or something like that. You know what I mean? He didn’t tell me, you know, what MS did to you. Yeah. He kind of just told me that’s what it was. this is how we’re going to treat it. Yeah. And then you know the standard MS test.

Yeah. And you know and and I think that that’s an issue when we go through that diagnosis back when I was 27. I mean it was kind of the same thing. Okay. Here it’s MS. It’s never going away. We’re going to put you on a DMT and you know go have a good day. You know they don’t they don’t talk about the mental part of it. The ex explaining of what this is going to be like for the rest of your life. And it sounds like the same thing with you. And that’s kind of frustrating to me. You know, I hear people all the time, you know, I didn’t even know what MS was. I thought I I I had MD. I thought I had a stroke. I mean, they don’t understand it. And that’s very frustrating to me.

It’s frustrating to me, too, because one, I work in healthcare. Never never knew what MS was, right? Two, I feel like they should tell you what could happen. You know what I mean? So that you’re prepared for it. At least I want to be prepared. I guess some people don’t want to know what could happen cuz they don’t want to know that that could happen. But I feel like for me personally, I need to know. Um, so I’m prepared in a sense, you know what I

mean? Instead of it just coming up on me. Like I feel like, you know, I they tell you that you’re immunosuppressed, right? And you’re more susceptible to infections because you’re on the DMT. Well, what does that mean? You know what I mean? Because just, you know, these prior two months, I had an infe. I didn’t even know. I thought it was MS. You know what I’m saying? Because it felt like that was MS.

Yeah. I I get it. I get it. So, let me ask you this, Daniel, you know, I know that you have a family. You you’re married and um you got kids. When you got that diagnosis in 23, how did they understand it? Yeah. I mean, you you got a you got an awesome husband. He’s very supportive. Did he understand the disease? Just tell me how that went for you.

No, we we were kind of just glad to have a diagnosis, I think. And my husband, you know, he he doesn’t know. He he didn’t know. I mean, he didn’t my my children didn’t know. I didn’t even know what it could do uh dayto day. But, you

know, I I’m grateful for my husband because, you know, the mental part of this disease is very trying. Um, and it’s because we lose so much so quickly and we have to fight to try and get some of it back. Um, I went to a dark place and I’m grateful for my husband for recognizing that I needed help. You know what I mean? cuz I could have stayed there in that dark place if he wouldn’t cuz I didn’t want to do anything. I didn’t I didn’t want to get up. You know what I mean? Like it was very dark. But I never want to feel like that again.

You know, um my kids, you know, my son, he noticed a change in me. And you know, my baby, he was sick. So he’s like, I don’t want my mommy to die. You know, cuz he’s seeing his mommy go through this. You see, she she lost her ability to walk.

She’s using a walker. She can’t even get around. You know what I mean? Like she and he’s used to seeing her stand up, cook, and do all of these things and she can’t do that anymore. And then my oldest son, you know, I don’t really feel like it affects him cuz he’s not in the house. So he doesn’t he doesn’t see my struggle day to day.

Yeah, I get that. You know, and and that’s the part like when when I was going through my my diagnosis and I was young in my diagnosis and my kids um you know, I was bringing them up and and I didn’t want them to be afraid of the disease. You know, I I tried to explain to them that, hey, dad’s got dad’s got a medical condition. I got to take medicine for it, but I’m still your dad. you know, I I’m still going to be here for you. I could still I’m still going to help you with your homework. I’m still going to like, you know, help you with your your sports and anything. I I that just because I have MS and I tried to teach them, you know, don’t be afraid of this disease, you know, it just if dad falls, if dad falls, just wait, you know, make sure I’m okay, then you can laugh at me. Um, you know, but I didn’t want them to be scared of this disease. I wanted to explain to them that I’m still your dad. And I I think that all of us, you know, cuz we get that mom guilt, we get that dad guilt that we’re not there for our for our kids.

Mhm. I I have that a lot. Um I mean, for the first two years, you know, like I wasn’t able to go to my son’s graduation or his you promotions, you know what I mean? And that was depressing in itself. You know, his first birthday party he got invited to I wasn’t able to go to. So things like that are, you know, things that we miss because of this disease. But at the same time, I’m grateful for my my child understanding that mommy doesn’t feel good and, you

know, all of the things that bother me now that didn’t before. You know what I mean? because I used to be able to be outside, Brian. You know what I mean? Like I was I was never home. I was always outside. Um and now I have this disease. I be inside because noise, um lights, you know what I’m saying? Walking. Um I get over stimulated. And that to me is probably one of my worst symptoms. I don’t know. I don’t know what’s worse. the fatigue, you know, the flares, the oversensitivity.

Yeah. The depression, the anxiety. Uh cuz with this disease, you’re depressed cuz you have lost all of this, right? And then you have anxiety cuz you don’t want to go outside, you know, cuz you know you be falling in the house or something be heavy or you know the

bathroom issues, you know what I’m saying? So you have all this anxiety and this is the part that we just want people to understand, you know, I mean like we want to be treated like a regular, you know, human being and we want people to understand that, you know, we do get fatigued. It’s it’s not that we’re lazy. It’s that, you know, certain things like they bother us. you know, like I know some people that can’t be out in sunlight because it it affects their their eyes and you know, so they have to wear sunglasses.

That’s me. I you know, if I’m outside like how the sun is right now, if I was outside, I’d have to have sunglasses on like I every time I go out the house, I don’t know what it is, but yeah, I know. Even in the stores, I tell

people I feel like, you know, the the person who used to be in the club with the sunglasses on and you always thought they was on something. That’s me. I tell people all the time now, right? I’ll be like, “You going to look at me crazy cuz I got my glasses on. Even in church, I have my sunglasses on all the time.” You know, and people don’t understand that, you know. they they just see a person that’s inside a building with sunglasses on and they’re like, “Oh, wow.” You know, they you know, they don’t understand that that person might be doing it for a reason and, you know, they make judgments on people and and

that’s just the frustrating part, I think, with uh with dealing with this disease. So, let me ask you this, Danielle. Um what kind of DMTs did they put you on? And and how did you how did your body react to them? Did they did you have any issues with your DMTs?

he uh the first DMT and the only DMT I’ve been on is Ocrevus and um that’s kind of been a saber for me. It gave me my ability to walk back. Um I wasn’t really sick, you know, the first I want to say 2 and 1/2 years. Um I never had an infection. Um I was able to, you know, kind of live a normal life. Um, the only thing is that I think it affects my stomach. I I know they want to tell us that, you know, it’s the

brain and all of those things, but you know, I have a stomach issues, but I don’t know if it’s the MS or the Ocrevus. I don’t want to stop taking the Ocrevus though because like my mom, you know, my uncle wasn’t on in a DMT and by the time he was older, his disease had progressed. He wanted to be in a DMT and it was too

late. So my mom asked me to please take the medicine so it doesn’t progress as fast. And I did that for my mother cuz she’s my best friend, you know? I have I have a supportive family, you know what I mean? Like I’m truly blessed, you know? And I my I’ve been through this with my brother who has lupus, my sister who has lupus, you know. Um I thought I would get something not MS, you know what I mean?

Right. Yeah. You you had to break the streak and go from lupus to MS. You know, you Right. I tell people that MS is the mother of autoimmune diseases. You know what I’m saying? Um cuz it’s your brain and your spine. I mean the lupus affects your organs or whatever. You know what I’m saying? The hydrogenitis affects your sex gland. I mean your sweat glands. You know what I’m saying? Like it’s just one part of you where MS can affect all of you. Yeah.

Cuz it’s your brain and your spine. Yep. Absolutely. So let me ask you this. um we met each other on TikTok and I know how important that um that platform

is to you and how important it is to me and let’s talk a little bit about that that platform and the importance it is for our mental health just meeting people like how we met and how we’re friends with vocals Ray Ray uh Q and Millie and and and and everybody. I mean, just let’s talk a little bit about that community because I I talk about it a lot. It’s very important and I’m 56 years old. I’m this old guy and I’m sitting here on TikTok talking to people from all over the world and I it’s very important to me. So, I just wanted to talk a little bit about that about what you think of that TikTok platform.

But I kind of feel like it allows me to be who I am, you know, like um I love being able to connect with people, know that I’m not going through whatever it is that I’m going through alone. And I’m such a people person that it just allows me to still be connected to people. Um, and this time is with a purpose. You know what I’m saying? And then they’re so supportive and loving and caring and um I hope that I’m that to them too, you know, cuz over there I’m dank. You know what I’m saying?

Um and I, you know, it just it allows me to be who I am with this disease, if that makes sense. whereas, you know, other people or other friends, they don’t they don’t really understand it. Um, but I feel like everyone there does because they know we can’t be outside and we can’t be doing all of the things that we want to do, but then we still get to do the things that we want to do, if that makes sense. And I still get to be social. You know what I mean? Cuz I’m a social person. I don’t know if you could tell, but that just me.

Yep. Oh, I know that. Dank, I I mean, you’re always one of the, you know, we get nine people up in the boxes and and I mean, you’re always one of the ones that are most vocal in there. You know, you’re always talking, cracking jokes. I mean, it is just a bunch of people that understand each other, you know? I mean, if we say, “Hey, I’m having a bad day today.” We don’t question it, you know?

We just like, “Oh, man. You know, that sucks.” you know, hey, we pick people up, you know, when they’re down and we celebrate people’s victories. I mean, we we see people going on walks and, you know, going and doing stuff in a weight room and and, you know, getting up out of a wheelchair for the first time in a year or something and we just sit there and celebrate. It’s so amazing and it’s so encouraging to see and just to be

able to see how this disease affects everybody differently, but we all have one understanding of this disease and just that it connects all of us. You know what I mean? And we meet so many people from different walks of life, which is what I absolutely love to because it’s not just a certain type of person who’s affected by this disease.

Nope. This disease does not discriminate. It doesn’t care. It doesn’t care. It doesn’t care what part of the country uh world you live in. You can be from the UK. You can be from China. You can be from Australia. You can be from Russia, United States, Canada. It doesn’t matter. this disease is going to take you if it wants to take you and and

absolutely and it’s unexpected like nobody expects to get this disease. You know what I mean? Like you have a lot of things that lead up to maybe you questioning like did I have it then too? You know what I’m saying? But you never expect to get this disease, you know, right? And you know, and and that brings

up a good topic I wanted to get into because I know your history and I know my history and and um a lot of people that get diagnosed with MS, me, I we I’ve been I’ve had traumatic experiences in my life. I lost my dad when I was 15 years old. I was in a really bad car accident when I was 23 and then I got diagnosed at 27. And I think that there’s a correlation between childhood trauma or traumatic events in your life and then, you know, eventually getting diagnosed with our MS. Um, what do you think about that? Cuz I know that you’ve been through hell and back um before your diagnosis. Do you think that there’s any link to any of that?

Often wonder, Brian, you know what I mean? Because like like you, my I was very youngminded, Brian. I wasn’t 15, but my brother was 16, my baby brother. Um, and I feel like I was 16 with him even though I was 27. Okay. Um, because my parents sheltered me, Brian, and my dad died. Okay. Like I didn’t know I that affected me in such a way. and I met my ex. And during the my dad, you know, it just is crazy. I’m not going to get all into that cuz it could it could go deep. But um I clung on to him because of a void, if that makes sense. And he just abused me. You know what I’m saying? And that abuse when I left when I got tired when it was like I I you know that

was it for me. He tried to kill me and I don’t know that before I felt like that but he probably did it. I just wasn’t accustomed to that. But that time he did. I left. Um 6 months after I left, my sister was going through her diagnosis of lupus. And I actually had optic neuritis. This was in 2017. I listen, nobody told me that optic neuritis was MS, right? I’m so grateful to my eye doctor at the time. I still see him. He saved my vision, right?

Because I should be blind, but he he saved it. And then here it is in 2020 after I get uh CO I exacerbate, right? That’s what I feel like CO did is it exacerbated all of my MS and I just, you know what I mean? My immune system just couldn’t recover from that. And I mean it’s just it’s crazy. So yes, I do I do wonder if what I went through the abuse cuz Yeah, it just you know that’s traumatic.

I hear I hear I hear from a lot of people that I record with that, you know, it’s it’s different. You know, it’s not it’s not that they were actually physically abused as a kid. I mean, it could have been a childhood sickness. um like they got mono or you know like or just like a depressing time like you know your your father my father but I just I I really think that there’s a correlation between the childhood trauma or traumatic events that we have that ignite our our autoimmune disease.

I don’t know. I just I really think that you know what I mean because I feel like I went so long you know 12 I can’t remember how long me and him were together. It was either 12 or 14 years. But, you know, my dad passed and I remember being lost. You like I I remember being lost. Um, and trying to fill that void, you know what I mean? And and um

I I don’t I don’t know. You know, I don’t I feel like during that I was so in the trash of it. You know what I mean? Like it was just trash. the toxic toxicity um that even when I got here and I met my husband, I brought some of that toxic to him and he was like, I’m not doing that. So if that’s what you want to do,

you know, but the way I felt about him was different. You know what I’m saying? So I was like, okay, I got to change, you feel me? And then I started changing. And I wonder if that change also calmed me down a little bit cuz I was always in fight or flight mode. You know what I’m saying?

Yeah. You know, and I think I think that everything does happen for a reason whether it’s good or bad. I mean, you know, all the all the things that you went through. I I mean, it ended up you ended up meeting your husband, you know, and I and I think and because I went through some some crazy stuff, too, you know, during my my lifetime with this disease and, you know, I ended up meeting my wife out of it. And

I know that we we have the same mentality. We stay motivated. I mean, what is your motivation to keep on fighting this fight every day, you know, just to keep on getting up? You’re still you’re still working a full-time job. Um, Danielle, I do. I still work a full-time job.

Um, it is, you know, I’m proud of myself because Brian, let me tell you, they like we talk about like there’s so many things that the brain can affect in my cognitive, let me tell you, if if during my first exacerbation, not my optical

neuritis, but my first exacerbation, I would have stopped working, I probably wouldn’t be able to work today. And I thank my neurologist for uh being like, “Get up. Don’t stop working.” Because I’m a like I tell you, I be in the revenue cycle. So I’m a medical coder. I’m a credentialing specialist. Like I have to look at numbers all day. I do accounting. You know what I mean? So that’s what I have to So I’m grateful for that. But also I write poetry.

Love it. Right. And so my one of my poems is going to be in the Georgia Bards anthology book for 2026.

So I’m grateful to God for like he’s my motivation. You know what I mean? And like honoring him is my motivation. And he actually came to me today, Brian, and you know, I’ve been fussing with you

guys about my muscles cuz I’ve been losing a lot of my muscles. And he told me, “Can’t nobody do it for you?” Because, you know, I’ll be just sitting here like, “My muscles, I need to gain some muscles, but you got to exercise, right? You got to.” And I’ll be so tired. You know what I mean? So, I don’t want to. But he was like, “Can’t nobody do it for you.”

Yep. I mean, you got to commit to it, you know? And and and I know that we we try to help each other, you know? We try to like, you know, motivate each other and, you know, come on, let’s go. I know there’s a group of people that go out walking during in the morning and they get on their live and they walk together on a live. I mean, we we pick each other up and I just like I love everything that you’re about, Dank. Um, and that’s her screen name. Um, I’m not I’m not calling her a name. Her name is Danielle, but she goes my screen name. My husband came up with that name, by the way.

I I love that name. I I know when I first met you and you explained everything, I just But I when I I love talking to you, Dank, and and I will always have you back on. Is there anything that you want to tell anybody that might be in a similar situation as you with getting their diagnosis? They might have been through a traumatic experience earlier in life and now they’re just trying to figure this out.

What would your message be to them just to keep on fighting? You know, the sun’s going to come up in the morning and you got this. we you know we can MS is liveable livable you know it’s a tough disease but we can do it what would your message be to them

just you know I mean you going to have bad days but don’t stay in them bad days you know what I mean like don’t stay there and know that there is a whole community out here just want to embrace

you know like you got to get over your shame of the disease Um, you got to get over, you know, the depression and you just have to push, you know, like remember who you are cuz you’re still that person, you know, like you just got something extra, you know, you need you have to have a little more push for whatever reason.

I say that all the time, Dank. Um, you know, MS is never going to be able to take away my accomplishments. you know, never the fact that I played at Michigan, it’s never going to be able to take away that fact, you know, and I’m proud of that fact. It’s never going to be able to take away the fact that I worked 20 years with this disease, you know. I s I sit here and go, screw you, MS. I made it 20 years, you know,

haha. But, you know, you just got to keep on fighting the fight. And that and that’s what you’re doing. I mean, you you you know, I know you got a nine-year-old and and and you you want to be there for him. and I just love everything that you’re about, Dank. And I really want to thank you for coming on and joining me today and sharing your journey with me. And I will definitely see you on TikTok lives in the future. I really appreciate you.

Okay. Thanks, Brian, for, you know, taking the time and, you know, come find us on TikTok.

Yeah, absolutely. All right. I’m gonna get going. Don’t forget to share us out. We want to be understood. and hit the subscribe button. Till the next episode, this is the MS Michigan man 64. I am out. If you like this kind of content, please like, share, follow, and subscribe. And as always, go blue!]