Living with Lupus: Edjuana Ross's Journey of Resilience and Joy

Ever wondered how a person can face a chronic illness with unyielding courage and still find joy in the everyday? Meet Edjuana Ross, a trailblazer and beacon of hope, as she shares her intense and emotional journey of living with lupus. As the first Black American to receive a stem cell transplant in the U.S., Edjuana recounts her startling experiences with mini strokes, the unique ways she copes, and the deeply moving reactions from her loved ones. Despite some technical hiccups, this 12-minute conversation packs a punch, highlighting her resilience, zest for life, and infectious love for music and television. Show your support by visiting lupusallstarrsfoundation.com and get inspired by Edjuana’s story.

 As we close this heartfelt episode, I want to extend my sincere gratitude to each of our listeners for their unwavering support and connection. Your encouragement means the world to me. Love u, miss u, bye!
http://www.lupusallstarrsfoundation.com

Chapters

• 0:01 Lupus Journey With Edwana Ross
• 15:28 Chicago Born Podcast Promotion

Transcript

Speaker 1: 0:01

what a bummer. I had a whole three hours recorded with Edwana Ross and I went to start editing it and I saw there was only 13 minutes of recorded video on her side. So I have a lot of video of me sitting there talking to nobody, but there was a beginning piece that I'm able to salvage and use today. It's not much. It's the beginning piece where we're starting to really just kind of get to know each other and then, when we actually start to get into more so of what we're here to talk about it, her whole video is gone. It just stops cuts and I'm bummed by it because I wanted you to hear how amazing she actually is and you don't really get a chance to do that. I will talk to her and maybe we can get her on again. It has something to do with your phone storage. I don't know a lot. I really don't, and that's the bummer. Part of this whole thing is I'm talking to everyday people, so they're not necessarily going to have the setups and things that maybe somebody that was used to doing podcasts would normally have. Yeah, I need to watch for that in future interviews. I'm learning.

Speaker 1: 1:20

Enjoy the 12 minutes that I have of Edwana Ross. I didn't want to not have something to put out. I know that she was looking forward to hearing it and I just wish it was more, because I enjoy talking to her. I think she's amazing and this is about, well, the start of her explaining about her lupus journey. And not just that she is a music lover, she is a television lover. She's got so many cool things to talk about, prince being one of them. I appreciate you being here On with the show the Lovey Mishy by podcast.

Speaker 1: 1:59

Let's inspire each other. Inspire each other. I did not know anything about lupus. I will be the first to say it I didn't Nothing. I've heard about Lady Gaga on her documentary. I've heard about Selena Gomez on her documentary, but I really didn't know anything about it, like nothing. So I knew it was important to learn about lupus and share it with people that might be going through lupus or heard that they were diagnosed with lupus. So I have Edwana Ross here today to talk about her story and her journey, and it is riveting. She's a spitfire. She's got a heart of gold. She is the first black American to receive a stem cell transplant in America. Out of the kindness of your heart, after you've listened to this episode. Please go to her website and donate. It's lupusallstarsfoundationcom and star has two R's. Okay, enjoy Edwana's story.

Speaker 2: 3:09

I'm 24. What are you talking about? I had a mini stroke. It was unbelievable.

Speaker 1: 3:20

Were you by yourself.

Speaker 2: 3:23

Yes, oh God, yeah, yes, oh God, yeah, yeah. Okay, the first time I had to laugh about this A lot of this stuff I laugh about because that is my coping mechanism, because if I didn't I would just be crying. But yet, the first time I had one, I was by myself and I was actually on the phone with my boyfriend and my mom was at work and she came home and she was talking to me and my tongue had started to swell so I couldn't really speak, really speak, and as I was trying to say something, it was, it was not what I was saying, and she was like what are you doing? What are you talking about? Then she grabbed the phone. What did you do to her? And he was, he just started crying. And then, I guess the next day, I told him what happened and then he really started crying.

Speaker 2: 4:31

I was like, dude, it happened to me. Why are you crying? It was just, it was. It was just weird, it was, it was very, it was very. It was like I was outside my body looking at myself, because I know that couldn't have happened to me. And then the three times that happened, I was more calm and able to just know how the mini strokes in me were going to happen and how I had to just let it go. And each time I don't sleep soundly, I'm very noisy, I move constantly. My mom, she watched me and listened all night. For that first one, she said you did not move at all and that's not like you. I was like, okay, so it was. And older people I don't know if she was, if your aunt was talking to herself to calm down, cause it's one of those things that, um, oh my God, this, is this really happening, to the point where I don't know if she was reassuring herself?

Speaker 1: 6:03

That's a really good point, because I didn't see it that way until you said that Maybe she was, maybe she was.

Speaker 2: 6:10

It's one of those things that you're like, oh my God, what is this? Of those things that you're like, oh my God, what is this? And if she knew what it was like the second and third time. Okay, I know what this is, I don't like this, but I have to. I have to calm down, and actually I got really quiet and just let it pass, and I think I told my mom, probably later on hey, I had another one and we have to go to the, because the first one, she was going to rush me to the emergency room and she just let me sleep. The next morning she was like nope, get up, we're going to the doctor, let's go, let's go, let's go. I was like okay, up, we're going to the doctor, let's go, let's go, let's go. I was like okay, okay, okay. And at that point, though, I was more calm, but I was still like what now? Yeah, now, each it's to me, it's always a what now? And that's one thing that I hate.

Speaker 1: 7:17

Yeah, I want to say that I just we'll go ahead and we'll start, because I want to start off with telling you that anything you know, I'm hoping this is going to be a good conversation where it's just you and me, you know, and there's I have questions, but I'm hoping that I don't even have to look at them. It's just a natural thing. But if, while we're having this conversation, if you're like you know what I really don't want that in there, I'm fine with that. I'm easy. I do my own editing. You tell me what you want and what you don't want. Um, and so I just wanted you to know, Okay.

Speaker 2: 7:52

And what's so funny? I was telling them, because when you're on Social Security, you're not supposed to work. Oh yeah, what am I going to do with $943 a month?

Speaker 1: 8:05

Nothing, nothing.

Speaker 2: 8:09

And I'm addicted to TV. Don't judge me, I'm not. I'm addicted to TV because it's my escape. But yet, according to everybody I know it's your escape, but you're watching murder mysteries and I'm like, yeah, that does sound kind of crazy to the point where I had to limit myself when it came to like criminal minds. I think I stopped criminal minds altogether because it was like, are crazy people like that? And then, but hold on, you turn that off, you read the paper or let the news pop up on your phone and you're like I'll go back to criminal minds, nevermind, exactly, it's the same thing, because I've literally seen things. Okay, really, I've literally seen things within the last week on TikTok, as well as the news that I know I didn't just see that Today I heard a 911 phone call of this man calling 911 because his wife had just killed his two daughters.

Speaker 2: 9:29

There were seven and five Almost through my phone. I was like wait, don't throw it, might need it tonight. But I was like wait, don't throw it, might need it, like tonight. But I was like what? And you know, with with having lupus for me, and I like to say this because I got into it wasn't even an argument, it was just people don't understand. Lupus attacks people's body in a totally different way. Everybody's is different. Everybody's is different, but yet we still understand certain things. So we're like oh, I know what you're talking about, but yet people that don't have an autoimmune disease, they don't understand that. And I'm like you because I know I was unable to have children due to lupus and me researching it and finding out that possibly genetic yay, I don't know how my mom watched me go through what I went through.

Speaker 1: 10:44

It was probably heartbreaking.

Speaker 2: 10:46

I don't know. And then I had a cousin that is was a year older than I am. She lost her battle in 2016. I'm sorry, and I've had to fight cancer. They actually did surgery. It's been a lot. It's been a lot, it's been a lot. And then trying to live a normal life, like you said, it's heartbreaking. I'm out here, I work from home, yay, but not really, because what I do? I want to jump to the phone and strangle people on a daily basis.

Speaker 1: 11:33

Well, let's talk about that. Tell me, let me introduce you, let me introduce you to people, and then we're going to get, we're going to get into it. I just, I feel like I want them to get to know you. This is Love. You Miss you. Bye. I'm Christy Chanel, and today I am here with Edwanna Edwanna.

Speaker 2: 11:50

Hey girl, I love it.

Speaker 1: 11:53

I'm here with Edwanna Ross and we met on TikTok. I had put out a video and she jumped in in my comments and she mentioned she's like go Google me. And I'm like, okay, I'll go Google her. And I went and I checked out your website and I saw that you would have so much to offer people because I don't know and I will be the first to say it Anything about lupus, the only thing I've ever really seen. I saw the Lady Gaga documentary that she had and she's in there and she's got lupus. So she's talking about all the pain that she had and she's in there and she's got lupus. So she's talking about all the pain that she's in.

Speaker 2: 12:30

oh, now that makes me even angrier because I didn't see the documentary. But I adore her because I feel, I feel I'm. I'm the weirdest person in my family. Um, as people would say, when I was in high school I was an oreo. People assumed oh, all she listens to is rock music. I'm like sweetie, I listen to music, whatever, what and but yet but hold on. In high school, I was a little bit over the top when it came to prince. In high school, I was a little bit over the top when it came to Prince don't judge me and Steven Tyler, I was a little over the top.

Speaker 1: 13:15

Okay.

Speaker 2: 13:18

We could listen to music together for sure, to the point where I was sitting. One day I was in the car and this song came on and I'm like dang, I love this song. Let me go home and download it and it's called Chuck is in Love. I can't think of her name.

Speaker 1: 13:38

Chuck is in Love. How does it you going to sing it for me?

Speaker 2: 13:40

No, because I'm the worst singer. I'm the worst singer even though my cat and dog they're like hey, I'm like no, you stupid. Ricky Lee Jones and I was like I am weird, I'm like dude, but right now I I kind of it's not right now. I'm sorry, I'm trying to adjust myself to no worries because this chair.

Speaker 2: 14:09

I wanted to kill somebody from this chair today. But no, I mean because I'm in my office, because if I were in the front or in my room you would hear a dog, you would see a cat. I I don't want a cat like hitting me, or a dog like can I get on the bed with you please? No, this is not a group exercise today.

Speaker 2: 14:32

Um, you're going solo yeah and um, this I mean me. I've always been told that I have a story and I used to. I used to do a podcast, but it was just my voice, it was not my face, and my friends were like no, you need to do a video, Everybody needs to see your face. I'm like what do they need to see my face for? I didn't understand. I'm like and I kind of stopped and because it? Because the fighting with lupus is very, it's very, it's straining. And when I and you telling me about Gaga and I'm like, oh my gosh, she really does have lupus. Now she does. And it's to the point where Really Okay, so start there.

Speaker 1: 15:28

So you were, you're raised in Chicago. Is that where you were born? Okay, love you, miss you bye. L-u-m-u-b podcast Love you, miss you, bye has been brought to you by Christy Chanel LLC, but if you're looking for more information or want to follow us on social media, go check out christyschanelcom. All the podcasts are streamed there and the YouTube episodes are there, so why not? You can also listen where all podcasts are streamed. This includes Apple Podcasts and Spotify. And lastly, thank you to you you, yeah, you, the one that's listening or watching. I appreciate you so much. Love you, misha Bye.