Episode 1: Mercedes Yvette

Join Lauren as she chats with Mercedes Yvette, known internationally for her star turn on America’s Next Top Model. Mercedes continues to model, and is also an actress, jewelry designer, activist, and busy working momma living with Lupus. She has been a Lupus advocate for many years, and in Episode 1 recounts her diagnosis, treatment, and ongoing self-care and symptom management behaviors.

Key links mentioned in this episode:

Lupus Foundation of America

The Gilded Fox

America’s Next Top Model

Remote work opportunities

Malcolm Gladwell – Outliers

Dr. Weil

Kris Carr

Dr. Mark Hyman

Puracy

Reformation

In this episode, Mercedes reveals:

  • how she was diagnosed with Lupus, and how a regular yoga practice and Ayurvedic therapies have been integral to her healing journey
  • why she stopped treating herself with Chinese herbs
  • how she became a contestant on ANTM only 3 months into her diagnosis, and how producers of the show discovered she was sick and focused on her illness as a storyline
  • how she had to hit bottom to shift her perspective from negativity to positivity
  • whom she looks to for inspiration
  • why anyone with a potential Lupus diagnosis should see a rheumatologist
  • why she always looks cute on the beach
  • how her mom is her best friend and #1 advocate
  • why remote work and self-employment are great options for people with chronic illness, and can even be creatively fulfilling while creating income
  • how she had a perfectly normal pregnancy despite her Lupus, but that didn’t stop her from having a pretty intense delivery experience
  • why you need to trust your body above all else, learn to listen to it, and keep it moving
  • how community and purpose can give your life meaning
  • how she has learned to look out for herself by speaking up when she’s in need
  • her favorite sustainable cleaning and fashion brands
  • how journaling symptoms is helpful to track your diagnosis
  • her favorite indulgences: Netflix + wine!


Lauren: Okay, guys… on the show today we’ve got Mercedes Yvette, who’s a lovely friend of mine. She is a mom, a former contestant on America’s Next Top Model. She’s still modeling and she’s acting, and she’s also the co-owner of an awesome jewelry company called The Gilded Fox — and she has lupus and is a lupus advocate. And so we’re going to be talking about lupus today. Mercedes, hey, thanks for joining us!

Mercedes: Thank you for having me! I feel honored!

Lauren: So nice to have you on the show! So tell us, let’s just start with the real basics … What’s lupus and how does it affect you?

Mercedes: Sure. Lupus is an autoimmune disease that affects the body. And it can be anywhere from your skin or internally in your immune system, and it affects everyone differently. And that’s why it’s so hard to diagnose.

Lauren: Interesting. So how did you first realize that you were sick?

Mercedes: Well, some of the first symptoms for most people are arthritis or joint pain, heavy fatigue. I thought I had mono in high school, and I was like, ‘Something’s up. I’m an athlete, I eat healthy … like, what’s going on?’

Lauren: And how did you find out you had lupus? What led you to the diagnosis?

Mercedes: Well, I guess I would be “the lucky one”. My grandmother had it. So it was like a no-brainer. If you have someone in your family, it’s easier to get diagnosed. As opposed to some people who have the symptoms for years and never get diagnosed with it.

Lauren: Wow. Okay. So how young were you when you first had  symptoms?

Mercedes: I would say I was around 16 when I had the symptoms, but it wasn’t until I was 21 that I got diagnosed.

Lauren: Okay, and you’ve been living it with it all this time, and you’ve been able to manage your symptoms.

Mercedes: Exactly.

Lauren: So in terms of treatment, is the idea to get the symptoms under control? Is there a cure for lupus?

Mercedes: There’s no textbook cure for lupus. But the things I do on a daily basis have a lot to do with … diet; mental health; physicality, like working out, doing yoga — that pretty much saved me.

Lauren: Hello! Okay, so there are a lot of people who are probably going to be, oh, everyone’s telling you to do yoga, but you’re, like: Guys, do yoga.

Mercedes: No, seriously, my mom was the one and you never want to listen to your mom or whatever … she doesn’t know! And I remember doing Downward Facing Dog, literally feeling like blood in my throat.

Lauren: Wow! Okay, so that probably wasn’t so great. But you’ve been able to find other positions that work for you?

Mercedes: Yeah, because when I got diagnosed, the last thing you want to do is move when your joints hurt. And that’s the first thing you should be doing. And doctors always recommend swimming; it’s more of a gentle introduction into moving your joints around. But I went straight into yoga, and I am so grateful for it today.

Lauren: And are you also certified as a yoga instructor; is that right?

Mercedes: I am! Let’s just add that to the piece!

Lauren: Let’s add that to your list of wonderful skills! So you really got into it, obviously. 

Mercedes: Yeah, I did because I saw the results. And I also got into Ayurveda and the whole yogic lifestyle, and I attribute my health to following those practices.

Lauren: Right. So in terms of your physical activity, you’re doing a lot of yoga. And then in terms of the Ayurvedic health aspect of it, have you followed a lot of that and are you still following some of those tenets, like, with supplementing?

Mercedes: Yeah, in the beginning I was really hardcore. And then I started to feel a lot better, and then I kind of cheated here and there because, you know, everybody has to live their life so I can’t be drinking turmeric tea every day! But yeah, it definitely helps. The whole thing about having lupus is that your body is attacking itself. So how can you get your body in a state where it’s so alkaline, everything is fine. The whole purpose of Ayurveda is treating the whole body system instead of one part. Like, ‘Oh, my head hurts. So here, take an Advil.’  And Ayurveda says, ‘No, don’t take an Advil. Let’s look at the whole body system and figure out why your head is hurting.’ It could be something you’re intaking. Or maybe you’re not getting enough zinc, or maybe you’re not getting enough magnesium. The great thing about Ayurveda is that it treats the whole body system — as opposed to just one problem that you’re having in your body.

Lauren: Right. Does that mean, also then, in your experience of Ayurveda, that practitioners you’re working with are looking at a much more detailed blood panel too, to figure out what’s lacking specifically?

Mercedes: Yeah, they’re looking at blood. They’re looking at sleep patterns. They’re looking at everything. Your whole body system. How are you functioning? Even your poop.

Lauren: Wow. Okay! Hello, Ayurveda!  So you’re talking about the whole body with Ayurveda and Ayurvedic treatment and diagnosis, so let’s talk specifically about what happened to you when you were a teenager … because you said you were 16 when you got diagnosed, or had symptoms?

Mercedes: Yeah, I had symptoms at 16, but I wasn’t treated and diagnosed until I was 21.

Lauren: Which is a long time to be feeling kind of below par…

Mercedes: Yeah.

Lauren: So what were the symptoms that you were experiencing that led you to the diagnosis?

Mercedes: Yeah, so I was having heavy fatigue. And when I was in high school, I played sports, so I just thought, Oh, it’s just from sports, you know, and overworking myself. And then when I got to college, it was more like I-can’t-get-out-of-bed fatigue. And then my joints — easy tasks like opening up a peanut butter jar or washing my hair became nearly impossible to do.

Lauren: Wow.

Mercedes: And so then I knew … okay, there’s something seriously wrong with me. And then of course I got diagnosed with lupus SLE. There are two types of lupus — there’s discoid lupus, and there’s SLE lupus — and SLE affects your internal organs, which is more dangerous because your kidneys can fail.

Lauren:  And kidneys and lungs are the main ones.

Mercedes: Yeah, kidney, lung, heart. A lot of women have heart attacks. Your brain is an organ as well, so I had a lot of cognitive dysfunctions… I knew that one plus one equals two — but I didn’t know how to get there. I knew the beginning and the end, but I was, like, how do we get there again?

Lauren: Were you even being tested for learning disabilities?

Mercedes: No. I mean, it wasn’t that bad. It was more in conversation. I would lose my train of thought and try to figure out what happened. And it wasn’t great. I was a junior in college by then. And I was like, am I dumb? What’s happening to me? I can’t move my arms. I can’t think. I’m tired all the time. My eyes had a hard time functioning because I was on regular medicine, which would be Plaquenil for most people. And then also Prednisone, because I was going through a flare so they give you steroids to bring down your flare. And then I was seeing someone who dealt with herbs, and that’s a dangerous combination. You either do one or the other. You don’t do both. And because I’m a natural girl, I was like, ‘Okay, let me try some natural herbs.’ But you cannot take it with medicine because that is really dangerous.

Lauren: So the interactions are not a good interaction?

Mercedes: Exactly.

Lauren: Okay, so when you were working with a herbalist and with a Western medicine doctor … at what point did you realize, ‘Oh, these things are not affecting each other well’?

Mercedes: When I was walking to one of my classes, and I just couldn’t see, and I was like … something’s up. I need to stop one of these things. And I did. As soon as I stopped the herbs, I felt fine.

Lauren:  Oh, wow. Okay. So you were more inclined to stop the more natural treatment than to stop the medicine?

Mercedes: Yeah. At the time, I was 21, I trusted the doctors and I didn’t trust myself enough to just go on herbs. At that time. If that person was a good herbalist, they wouldn’t have had me take Western medicine at the same time.

Lauren:  So you should have asked the question…

Mercedes: Yeah, I didn’t go to somebody who was good. And that’s the thing … when you first get diagnosed, you’re just looking for answers.

Lauren: Yeah, and I presume you’ve also had your ups and downs with various practitioners?  I think we all do because some people are going to work for us and some of them aren’t. But it’s a real learning curve, isn’t it?

Mercedes: It’s huge. The thing about lupus … for most people it’s finding the right doctor and the right chemical cocktail. Like, what meds are going to work for you. Because as I said before, for some people with lupus, their liver could be affected, or my kidneys could be affected, or I’m having the Malar rash only.

Lauren: What’s that rash?

Mercedes: It’s a butterfly rash that appears on your face, mostly when your skin is attacking itself, or if you’ve been in the sun too long it’ll appear. Lupus means ‘wolf’ in Latin — that’s how the name came about. People could always tell that you had lupus because you have markings like a wolf.

Lauren:  The markings on the face, the rash that people get across the face. Does that tend to be one of the more common symptoms, or, you were saying, it’s different for everyone, right?

Mercedes: Yeah, it is. It is different for everyone. But a lot of people I know do have the markings. Some are more prominent than others. I mean, lupus was diagnosed in the 1800s. It’s kind of crazy that people still don’t know about it.

Lauren: Yeah. It seems like it’s one of those diseases that flies under the radar. But it sounds like you were “lucky” as well, because you had the genetic predisposition through your grandmother, right?

Mercedes: Yeah, lucky or unlucky!

Lauren: Right!

Mercedes:  Right! I’m a winner of lupus! Come on down!

Lauren: So you were having all of these episodes in college, which has to be hard too because you’re on your own, presumably?  On your own and you’re having all these symptoms that have been ongoing for a long time and you had to seek treatment all by yourself. How was that?

Mercedes: It was challenging. I mean, I had my mom there. I actually went to a commuter college so I went back and forth. But after that, I got on America’s Next Top Model almost immediately after I got diagnosed.

Lauren: Wow.

Mercedes: So the irony is that people got to see what lupus is like, being played out on national television, because I was only two or three months in from being diagnosed.

Lauren: So that must have brought a lot of awareness at the time.

Mercedes: Yeah, I didn’t even know it was going to bring awareness. I was just trying to get through a competition and deal with living with an autoimmune disease.

Lauren: Right. And how was it seeking treatment when you were on location for that show?

Mercedes: It was challenging, because in the contract, it said that you weren’t supposed to have any illnesses or diseases. So I hid it because I didn’t want to get kicked off the show. I would ask the producers if I could borrow their cell phones so I could call my doctor, or call my mom, and then they caught wind of it and thought, ‘Ooh, this could be a good storyline,’ as any good producer would do to make a great show.

Lauren:  So that became your narrative, and I guess that was more of a positive for you because you were able to continue to seek treatment, properly. But why do you think they had in the contract: You can’t have any illnesses.  I guess maybe they weren’t familiar with the autoimmune world or the invisible world, right?

Mercedes: They were probably unsure of the things they couldn’t control. But what they did realize is that it makes life relatable, and people relate to the show because somebody they know has lupus or they have lupus themselves. And then every season, everyone had some type of disease. I thought that was funny!

Lauren:  But you’ve got to give yourself credit for being kind of an ambassador! Did that make you feel weird? Or did you feel okay that they sort of twisted the storyline that way?

Mercedes: No. My whole thing was, I never wanted to be pitied or looked at differently because I had something that was different than someone else. I wanted to be looked at, like: ‘I’m trying to do this competition. I’m also dealing with this.’ And that’s kind of how I live my life. I never let lupus define who I am as a person. It’s just something that I have. It’s something my grandmother had. I made the decision that I wasn’t going to let my disease affect my life.

Lauren: Well, that’s a huge thing in this community of invisible disease, right … because there are those in the community who probably have so much going on that they’re feeling their symptoms and the way that their disease manifests is defining who they are. Because it’s affecting so much of their cognitive and physical ability. So, was that like a natural mental shift for you to be able to say, ‘Okay, I’m not going to let this define me’ – or was it something that you had to sort of figure out as you were going?

Mercedes: I figured it out after about a year of dealing with the disease, because when you get diagnosed, there are so many different ways you can go. For me, it was, ‘Am I gonna die? I feel sorry for myself. I can’t get out of bed. Okay, now I need to do something. I’m not going to let it affect my life.’ I went downward and then upward — as opposed to, some people just go downward: ‘Oh, I have lupus and my life is never going to be the same. And I’m just going to wallow in my sorrows.’ And that’s fine if you want to do that as an individual. But for me, it was: ‘Oh, no!  Lance Armstrong had cancer and he beat it!’  And I just started looking to positive figures who had autoimmune diseases, whether it was cancer, or Parkinson’s disease like Michael J. Fox, and I thought: ‘These people can do it. It’s all a mentality, and I can get through this.’

Lauren: So you didn’t need to seek help. You just looked outside yourself, and you were able to make that connection.

Mercedes: Right, and I’ve always been a really positive person, in general. And I think that just helped me innately.

Lauren: You also mentioned that your mom was there with you. Because I was going to ask if you needed a personal advocate at any point in the journey to your health, and it sounds like your mom was there with you the whole time.

Mercedes:  The most important thing I will tell people who have lupus is that when they first get diagnosed, the people around them care about them so much that they want to help them. And that’s a good thing and a bad thing. Depending on your personality. For me, I’m kind of stubborn. I’ll figure it out on my own. This is my thing to deal with. And so I resisted a lot of help in the beginning. But when I did let people in, that’s when I really got the help that I needed. My mom is an amazing researcher, and we found the best lupus doctor, I guess I would say in the United States, and that made a huge difference. We were talking before about practitioners, and you don’t really know what you’re going to get. The practitioner who was treating me before put me on these crazy medicines. When my new doctor saw that, he said:  ‘Why are you on this? That’s what 80-year-old people take.’

Not all doctors are created equally. And with that being said, I also have a perspective of the other side. I’ve also been on MediCal and not everyone has access to good medical care. Seeing that other side just recently after losing my job for a while made me really realize that people like you who put these podcasts out are so integral. It’s so important for these communities to hear this because they don’t have access to information or they can’t see the best doctor, and they really want to help themselves.

Lauren: That’s something we were also touching on before we hit RECORD… about the resources that are available out there, particularly for people who maybe don’t have access to the best medical care. And a lot of that is about finding the forum online, finding the Twitter group, finding the Facebook group, and finding the experts in the field. For me, it was Dr. Izabella Wentz, the expert who sends emails every few days saying, ‘Maybe you should get tested for this. Maybe you should get tested for that.’ And if I didn’t have my integrative medicine specialist to go to, who’s a thyroid specialist, I would be going to my GP saying, ‘Hey, can we test this?’ But then, not all GPs would be open to testing those things either. So, as you say, it’s about doing your research, isn’t it? And having an advocate.

Mercedes:  Yeah, and when they get diagnosed, a lot of people don’t know to go see a rheumatologist. A rheumatologist looks at the joints and your blood, and most of the time they’re the people who treat lupus. Not all the time, but most of the time. When I first got diagnosed with lupus, the first thing I did was Google it — and that’s how I found the Lupus Foundation, because it seemed to be the first reliable source. I said, ‘Oh, the Lupus Foundation of America. These are forums that I can look on. This is where I can find more information about this disease. These are the doctors and the support groups I can look into for where I live.’

Lauren: But it also took the diagnosis to be able to find those groups, didn’t it?

Mercedes: Oh yes, of course.

Lauren: It’s interesting, because when I was in the process of being diagnosed with Hashimoto’s, some of my symptoms overlapped a bit with lupus symptoms and I was sent to a rheumatologist in the beginning — as most of us should be anyway because you should be checking certain things.  Because I had some joint pain and fatigue, they thought maybe it could be something like that. And obviously that’s not the path that I ended up on, but it’s interesting that lupus is so hard to nail down.

Mercedes: It is! Don’t WebMD yourself because you’ll think you’ll have a million different things! That’s the thing… it translates in everyone so differently. But the most common side [effects] are the fatigue and the joint pain; those are the two giveaways. And then the Malar rash is the number one.

Lauren: Was there a specific test that they did, a specific blood test for a lupus gene? How did that look?

Mercedes: Yeah, they test your blood and they test the blood in your ENA [an extractable nuclear antigen/ENA panel detects the presence of autoantibodies in the blood that react with proteins in the cell nucleus].

I read the book on lupus years ago; I’m not a doctor, I can’t specify. I just know that if your sed rate [the sedimentation rate, or blood test that checks for inflammation] is really high, then you’re in a flare and you have lupus. But to a doctor, if you have a high sed rate, does that mean you could also have something like sickle cell anemia? So I’m not quite sure. I would definitely look into a doctor who could speak more about the blood end on that. But I know that when I look at my test, I can see that I’m going through a flare because my sed rate is high.

Lauren: Do you know in your body when you’re going through a flare, too?

Mercedes: That’s what I listen to. That’s the most important thing. When you do have lupus, to listen to your body:  ‘Okay, I’m tired. Why am I tired? What am I eating? Am I eating a lot of white sugars or white bread? Why am I having this flare? Was I out in the sun last weekend; is that why I’m so tired on Monday, or whatever.’

Lauren: So sun sensitivity is a huge part of it, too?

Mercedes: It’s a huge part of it. And a lot of people don’t want to give that up. Like, when I’m in the sun, I have cool cute hats on. I carry parasol umbrellas. I make it look fashionable, because I know that I can’t be in the sun for long.

Lauren: You and I would be good beach buddies! I’m all about sitting under the shade when you’re on the beach.

Mercedes: That’s bathing beauties!

Lauren: Exactly. And you’ve got to take care of your skin.  The more we hear about sun damage anyway, the less appealing it sounds, right?

Mercedes: Yeah, if you look at women in Japan, their skin is beautiful because they do not let it touch [the sun!].

Lauren: They carry umbrellas all the time!

Mercedes: And don’t get me wrong. Ten minutes of sun is very helpful. You need your vitamin D. There are also supplements you can take, which I take.

Lauren: Same! So that has all really helped you! Just to go back to the advocacy side of this, because I know that you’ve worked as an advocate for lupus … but your mom being on the journey with you, how did that affect your relationship? Did it cause a strain on the relationship? Or was it something that’s ultimately been really positive for you guys?

Mercedes: My mom is my best friend. So for us, it’s like you and your best friend going through something together, and she’s been very supportive. She’s been a great researcher, she helped me find the best doctor. She’s always encouraged me to reach for my goals, regardless of having arthritis pain or not. So she’s been an integral part of my healing. But with that being said, my friends have all been great, too.  I want to say that a lot of people are afraid to come out, to their offices or to other people, and tell them they have lupus. I understand they’re afraid of losing their jobs, and stuff like that. But I’ve been advocating for lupus for 16 years, and it’s important for people to know what you’re going through, so they can be there and support you. And then you will pave the way for other people so that they can work in jobs, and they can get time off when they need to. Because if we keep this a secret, we’re not going to get the funding we need to get more research. We’re not going to get the time off from work that we need, because we are going through a flare. So the more we speak about it, the better our lives will be.

Lauren: And if you have a problem at work, that goes to discrimination too, so people have to be aware of what their rights are if they’re concerned about perception.

Mercedes: Yeah, it’s scary when you’re applying for jobs and they ask, “Do you have any illnesses?”, you have to think, will I get hired for this? Because I know they have to have ‘equal opportunity’. But that can go to many different forms — cultural, or whatever. Do I really want to hire someone who’s sick? If I’m running a business, I’m thinking of these things. Will this person be able to give me the work that I need?

Lauren: Yes, are they going to be a liability? Also the onus is always on the sufferers, right? I think the first thing that most people jump to when they’re starting to feel sick or even when people have the flu is, ‘Ugh, I’m a liability.’  How do you suggest people balance their attitude about that and work on their work/life balance in a way that’s positive for them and the people around them? Is that just an awareness thing?

Mercedes:  I think it’s an awareness thing, because I know a lot of people who work in HR, and I know that people take advantage of it as well and give people like us, who are sick, a bad name. So it’s hard; what do you do? Do you give people more housing? Will they get jobs? You know, it’s such an individual case by case study. But I feel like as an employer, if you hire someone and you can tell that they’re hard-working and they’re passionate … and oh, when they happen to have this disease that they need time off now and again … you can tell that they’re going to give everything they’ve got. Now if somebody comes in and says, ‘I have lupus, but I could probably work a couple of days a week; I’ll give my best.’ You can tell the difference between someone who is using their disease to their advantage, and using their disease to disadvantage.

Lauren: And those people maybe don’t have the most positive attitude about their disease as well. Maybe those are people who should be looking at remote work opportunities too because that’s a great field that’s opening up, certainly.

Mercedes: Correct. This is the best time to be in a world where you can work from home.

Lauren: Despite the pressures of having to be ‘more, more, more’ all the time, right?

Mercedes:  Technology has definitely helped. I know a lot of people who suffer from many different illnesses who stay at home. And they’re very functioning. They can take naps when they want to. And that’s great. And another important thing that you brought up is: finding the right job for your needs. And if that’s working from home, that’s great. There are a lot of jobs that offer that. There’s a lot of moms who do that. And they’re very successful writers, and in the entertainment field, and such.

Lauren: And they’re people like you and I, who have also channelled our situations into our own creative work, right? Where we’ve said, ‘You know what, we’re also going to do this thing for ourselves that we’ve been wanting to do anyway. So why don’t we pursue it when our bodies are telling us we need some more time.’ And if we can make it work like that, then that’s a really positive thing.

Mercedes: It’s kind of a blessing.

Lauren: And, now’s a good time to be a small business owner.

Mercedes:  It’s perfect. Everybody wants artisanal, homemade, handmade.

Lauren: And despite the fact that we live in a culture that’s always telling us to push ourselves more, emotionally and physically, we’re also in a culture — and particularly, we live in a bubble in Los Angeles, right — we are in the culture here where people want to know: where this came from. I want to know where the jewelry I buy comes from; I want to meet the artist. And you’re providing opportunities for yourself like that with The Gilded Fox, aren’t you?

Mercedes: Yeah, I am. That was a big thing for me, staying creative. Being able to set my own hours. And then, obviously, making something for someone that’s one-of-a-kind and that they’ll appreciate.

Lauren: And that feeds you as well, doesn’t it.

Mercedes: It feeds my soul!

Lauren: You also touched on the idea of moms who are working from home and working remote jobs. And you’re a mom. So tell us how being pregnant and delivering, and post-pregnancy — all the journey of becoming a mom … how did your lupus play into all of that? Did it make things more difficult? Did you have to be aware of more issues?

Mercedes: I was always afraid about the pregnancy part because I’d heard that you’ll go into remission when you get pregnant, but then the aftermath is going to be crazy. My doctor has warned me for years, so I was a little bit nervous about it. Also, I didn’t know if I was going to get pregnant; I’m a little bit older now. And that was something I made up in my head. I had a great pregnancy. I never felt like I was pregnant, which was crazy!

Lauren: Yeah! Because we were hanging out when you were pregnant. You were always like, ‘Hey, I’m pregnant. No big deal!’

Mercedes: I was going to concerts at seven months. Yeah. I was living the life!  Although I did have a crazy birthing experience. Whether you have lupus or not, I know a lot of women who have had crazy birth experiences. But for me, I had 36 hours of labor. And then I had an emergency C-section because I got pre-eclampsia, because they kept me in the labor room too long. The baby’s heart rate dropped and he was under a lot of stress because I didn’t eat for 36 hours. They induced my pregnancy.

Lauren: So it wasn’t related to the lupus that you got the pre-eclampsia; it was related to the actual labor experience.

Mercedes:  Exactly. But then my lupus started to flare because my body was in a lot of stress. So I was in the hospital for four days. I saw a specialist every two weeks when I was pregnant to check the heart rate and things like that. In my opinion, I don’t think that was necessary. I am a very healthy person and I know that if I ever do have another baby, I’m going to do it my way. These are my own thoughts. This is not what I’m telling anyone else. It’s just that the doctor group I was with was very on top of it. And I think some of that could have been avoided if I had just listened to myself. That’s a big thing and I want to tell people who have lupus: your doctor’s there to help you, but they’re not there to play God or whichever higher being you believe in. You have to trust yourself. You have to trust your body and what you’re feeling, and if you’re on a medicine that makes you feel insane, then listen to your body. And yes, sometimes it takes a while for the medicine to set in. But my whole thing is: try the Ayurvedic diet, try to eat healthy; cut out white sugars, white breads.

Definitely exercise. Exercising is a part of moving everything around. If you don’t exercise, you’re not going to get the full benefits of your body functioning. And oftentimes, when you take medicine, a lot of the deposits just sit there. So that’s why yoga is great because it twists the liver and it moves the kidneys around, benefits that you don’t get when you’re sedentary. It really does help, and listening to your body’s a huge way to figure out your own way of treating yourself.

Lauren: Yes, and surely the more exercise you do on a regular basis, the more in touch with your body you’ll become as well. So you’ll be able to listen to what your body’s trying to tell you.  Because, for sure, having gone both extremes myself where I’ve been sedentary because of fatigue, or I’ve been working out because I’ve just been more fit … you know you have to get used to either not being as in touch with your body or getting more in touch with your body. I think no matter what anyone tells you, exercise is great for you, right?

Mercedes: And you don’t have to go to a gym to get exercise.  Sometimes when I’m really feeling down, I will brush my teeth and do squats. Or I will do toe raises in the shower, or I’ll do stretches with my son on the couch. These are all little things where you don’t have to make the excuse … ‘Oh, I’d better work out before I go to the gym so I can look decent,’ or whatever weird things you may have in your head. Just move, keep it moving. My mom always says she’ll never stop moving. That’s what will keep her alive, and she’s knock-on-wood really healthy, and it’s because she does tai chi, she eats healthy. She lives in a positive mind frame. And I think these are all good attributes to health.

Lauren: Get a dog and go for a walk!

Mercedes: She has five dogs.

Lauren: And you’ve got a dog yourself, right? And if you don’t have a dog, or you can’t have a dog in your building or whatever, you can also be a dog walker! It’s a great social activity, right? I don’t have a dog, but my parents do, so whenever I can I get out there and take him to the park.

Mercedes: Yeah! I’m a huge follower of Malcolm Gladwell. He wrote a couple of books … there was one about longevity. He studied a group in Italy. They eat healthy, but the main reason why they live so long is community. They all had a purpose in whatever they did … like one guy was a florist and another guy just sang songs at weddings. So, finding your purpose and a sense of community is also important — because who wants to deal with a disease by themselves? It’s no fun.

Lauren: No. But I think, also, there’s that shift that has to take place, right? Like, when you first get sick, you often do feel alone.

Mercedes: Oh, absolutely.

Lauren: And we’ve both been through that journey of knowing, ‘Okay, I need to, like, tell people.’ Or thinking that people aren’t going to support you. But actually making the shift mentally. Hopefully whoever’s listening does have a support system, and hopefully your support system is willing to help you.

Mercedes: There’s definitely a transition that happens. You’re not going to just go, ‘Oh, I’m going to seek out a community because I’m sick.’  Obviously.  But after you come out of that transition, a community is really important.

Lauren:  And we talked a bit about the idea of balancing work and life, and going to work and being able to say to people, ‘Hey, by the way, I’m sick, but I’m still going to show up and do my job.’  Have you ever felt personally confronted or forced to justify your illness to other people because they couldn’t see it? But you could feel it?

Mercedes: Yeah, that’s the crazy thing about invisible illnesses. ‘Well, you look fine. You’re fine.’

Lauren: And there’s an extra pressure, I think, on women in that sense.

Mercedes: Yeah, there is an extra pressure. And also, I’ve been working as a model and actor for 16 years. So, it’s kind of crazy, because with my line of work, when you’re on set, you have to get the shot done in a certain amount of time. And I’ve often said to a director, ‘Hey, I can’t be in direct sunlight for more than an hour. So can we get somebody to put a fan over me, or a shade?’  And sometimes they’re like, ‘Well, why?’

Lauren: Like, ’Is she a diva or something?’

Mercedes: Yeah! So I’ve gotten that before. I mean, my line of work is really unusual for most people. And it’s hard because you have to say, ‘Look, this is what I need.’ And you have to be an advocate for yourself. And I know that not everyone has that personality. It could be challenging at times for people, but you just you have to do what you gotta do.

Lauren: And that’s a learning curve, too, right? It may not be something that clicks right away. But eventually, when you’re working and you’re feeling kind of crappy, you might just have to speak up, right?

Mercedes: I think that’s the most important thing, speaking up for yourself when you know you need something. Because if you don’t get it, then it means something worse later.

Lauren: Right. And that’s incredibly important. Not just having an advocate outside of your own body, like your mom or someone who’s helping take care of you and checking in on you. But also helping yourself and growing your self-confidence in that way, because, again, this maybe skews more towards the female, where we’re sort of taught to make ourselves smaller and not take up as much space. So the idea of having to be our own advocates, right? That’s kind of a big deal!

Mercedes: It is a big deal. My mom was always a single mom, so she taught me to always say what I need. But it’s still challenging. It’s still like, ‘Oh, I don’t want to get anyone in trouble, or whatever.’  But you have to be an advocate.

Lauren: So you’ve talked about advocacy and how you’ve been an advocate, and you’ve had your community of advocates and your friends and family, and some of the people who you’ve looked to for inspiration — especially when you first got sick.  What is it like to be an advocate for lupus, and are there other advocates in the field that you would recommend so anyone who’s listening could also check out?

Mercedes: Well, I made a promise to my grandmother that I would do something to help her. And then I got diagnosed with lupus 15 years after she died. And so I was kind of carrying the torch for this promise. I would explain to other people what lupus was, and how we can get funding, and how we can make positive change. So for me, it’s always been in me, because it was a promise I made when I was really young. With that being said, there are great advocates I look up to, such as Dr. [Andrew] Weil; his whole philosophy is nutrition and how to change the way we eat and how to look at food differently, how to buy seasonally and organic and why that makes a difference. I’ve looked to Kris Carr, who has cancer. She is all about eating whole foods, studying yoga, being spiritual. And I think all of these things have a same pattern. Kind of like when you read the Bible or the Quran … when you read all these different, big religious books, you notice that there’s always some type of common theme. There was a flood or whatever it may be …

Lauren: And for you that might be getting sick!

Mercedes: Yeah, exactly. I think these people have an idea. I also listen to Dr. Mark Hyman; his podcast is amazing. He talks about how all these autoimmune diseases are related — cancer, sickle cell anemia, Hashimoto’s, lupus — and how a lot of it is coming from our environment, from our food, from hidden things like stress. And these are all things that need to be addressed because we’re just, like, going on about our day and not making the adjustments that we need.

Lauren: And there are obviously adjustments that you can control, right, like diet and exercise. But what do you think about those environmental factors? Because there are certain factors like, everyone driving cars … gas emissions and the ozone layer breaking down. All of these factors are certainly in some way contributing. Whether it’s a rise in the incidence of invisible illnesses, or whether it’s just that we’re becoming more aware of these illnesses. What would you say to people, to help control those things? What can they do on a regular basis, aside from diet and exercise?

Mercedes: Yeah, the way that we recycle, the things that we use or the products and the companies that we choose to support. As soon as my son was born … not to crap on Dawn, but I don’t use Dawn because every time I used it, I was sneezing and I couldn’t figure out why. And then I thought, I don’t want to use this on the baby bottles. And I looked into products like Puracy, which is a great, sustainable brand out of Austin, Texas that doesn’t use any harsh chemicals in their soap, in their laundry detergent, products for cleaning surfaces. I also just go back to basic 1950s!  I mean, vinegar and lemon and baking powder are the best things that you already have in your kitchen, that you don’t need to buy. I’ve also been looking into zero waste; I would love to eventually get on that. I live in such a consumer society. I work in fashion. It’s one of the biggest polluters, but the brands that I buy, like Reformation — and vintage and secondhand — are a way to help support instead of harm your environment. Stay away from fast fashion.  With The Gilded Fox, all of our pieces are made from recycled materials. Or if it’s not recycled, it’s from villages where profits are going towards fair trade. So it’s like, supporting companies that support the environment.

Lauren: I think that’s a really fair point. So I think we’ve covered a lot today, and I like to wrap up the episodes with some ‘top three’ lists.

Mercedes: Okay!

Lauren:  I wanted to ask you, first of all, what are your top three tips for someone who suspects they might have something ‘off’ or might be living with some kind of invisible illness? What are your three go-to’s that you would suggest for people?

Mercedes:  Listen to your body. Write down what you feel is going on, and then compare it a week later to see if there’s a difference. And that’s it. I’m gonna give you a top two!

Lauren: Well, I suppose part of the listening to your body is like, start doing yoga …

Mercedes: Yeah, start doing yoga and eating well.

Lauren: In terms of doing yoga and eating well, do you ever cheat on your treatment and lifestyle?

Mercedes: Absolutely. Because I’m all about moderation. I wish I could be an extremist, but it’s never been in my personality.

Lauren: You’ve got to live your life, too, right?

Mercedes: Yeah, I mean, extremists live their life too, but some are just more hardcore! Yeah, I definitely cheat. I love wine. Alcohol is not alkaline at all. But I am Italian; I need a Montepulciano in my life once in a while! And what else do I cheat on?

Lauren: Or secret indulgences.

Mercedes: Secret indulgences would be watching Netflix and binge watching. Which I know is not healthy. But it makes me feel good!

Lauren:  Well, what’s unhealthy if you feel good, right?

Mercedes: It feeds the soul. Although I know I could be reading or spending more time doing something else that’s more productive …

Lauren: But sometimes you’ve got to unplug though, don’t you. Resting and unplugging and not putting effort into what you’re doing sometimes.

Mercedes: That’s a huge thing. And that’s something that I think now more than ever our society needs to do more often — unplug and give yourself a break, and know that it’s okay to take a break.

Lauren: And do you have any favorite comfort activities? If you have a flare-up, or if you’re feeling a little off?

Mercedes: Just rest. But for me, I’m like a really crazy person. I can fall asleep anywhere …

Lauren: Same!

Mercedes: And I told my husband this the other day, ‘You know, the key to falling asleep easily for me is getting really warm, because it feels cozy. And I just, like, knock out. For him, he’s the opposite. If it’s freezing, and it’s like an ice cave, then he can fall asleep.

Lauren: And that’s got to be a fun bedroom!

Mercedes: Yeah, you’re right! It’s hard. It’s basically cold all the time. And I have, like, a million sweaters on me!

Lauren: So you do like to nest?

Mercedes: Yes! I like to nest and burrow. I’m definitely some type of woodland creature.

Lauren: Well, thank you so much for being on the show today, Mercedes. I’m so glad that everyone was able to hear a bit about your journey and your story. And we’re definitely going to post links on the website to a lot of the references that you made today, especially for The Gilded Fox, because you guys should definitely check out Mercedes’ jewelry. And for the Lupus Foundation of America and some other references that were made. And hopefully we’ll have you back on the show sometime again soon. But thank you so much for talking about lupus and educating us a little bit more, and hopefully we keep getting funding for it, right, to keep researching.

Mercedes: Exactly. Thanks for having me, and thanks for doing this for everyone.

Lauren: Thank you so much.

We welcome your thoughts and comments!

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