Living with Lupus: A Holistic Journey to Self-Empowerment
Kara Wada, MD: Welcome back, everyone, to this episode of the Becoming Immune Confident podcast. My name is Dr. Kara Wada, and I am thrilled, thrilled, thrilled to welcome my friend and fellow autoimmune person, community member, I don't know, we haven't talked about...
Amanda Chay, MA: Warriors.
Kara Wada, MD: Do you like Warriors? It's a little controversial. We can talk a little bit about that. But I have Amanda Chay with me. She is the author of an amazing book that we're going to talk all about. But she's also an entrepreneur, a lifelong health nut who has helped countless businesses and individuals put their health first. Amanda's own battle with lupus, which often drives her bonkers has fueled her passion for helping women with lupus and other autoimmune conditions as well. I am so thrilled to get the chance to chat with you again. So I was letting Amanda know that it's election day here when we're recording this. And in our community, it is no school day. We're on the move. We're in the mobile podcast studio, which is my minivan. And here we are.
Amanda Chay, MA: And as we mentioned, it's a very big election day for Ohio.
Kara Wada, MD: Yes, absolutely.
Amanda Chay, MA: For women's rights.
Kara Wada, MD: Yes, it was awesome having my girls, so they don't have school, so they're at a play date, but they came with me to vote and helped me hopefully ensure that their rights are maintained.
Amanda Chay, MA: Absolutely. Yeah. And Kara knows I'm an Ohioan by birth, and it's still there. I still cheer on the Bengals every week.
Amanda's Journey with Lupus
Kara Wada, MD: Well, let's dive in. Share a little bit about your story and how you came to writing this book, too.
Amanda Chay, MA: Sure. So most likely I have had lupus ever since that first daughter of mine, her name is Anna, since I was pregnant with her. I was a hyperemesis pregnant woman, which meant extreme vomiting, seven hospitalizations, feeding tubes where they told me you could not throw them up and they would be flinging out of my body. So I was really, really sick with her. And it was just literally like, "How do we save your life? How do we save your baby's life?" And that was it, right? That was all, no focus like, "Why in the hell is this happening?" So that happened.
I had another daughter who turned out lovely, not as big issues, and then years came by, I had weird things that would happen, and it just didn't make sense. I would have all these mouth sores, and I would ask a dentist, and she's, "Oh, that's nothing."
And I'm like, "Oh." And then I would ask again, "Well, maybe you're stressed." And I would just be like, "Okay" and then I would have a lot of joint pain, and I just thought, I've been a beast. I've been a really beast on my body when it comes to sports, all these sports. And I just thought, "Okay. I've done this thing." But when I moved from Florida to North Carolina, where I live now, I was teaching a bunch of workout classes as I've done and I would just cry at night. Which is like ironic, right? You don't want your instructor, like crying at home. I feel so bad, my hips and my knees. I just was like, "Something's wrong." So I went to a doctor who said, "Yeah, you're just not young anymore." And I'm like, "Screw you, run some tests, buddy." And he ran the test and he's, "Oh, you have something called-" I don't even know if he knew how to say it correctly like, "show jrind." And I'm like, "Sjogren's." So it said I had Sjogren's, I remember the percentage, and it said I had 100 percent neonatal lupus, which is something that babies get, but adults don't get.
And so we ignored the neonatal lupus, never ever was it discussed ever again, and we went on with Sjogren's. And that is just so people know, this is an autoimmune disease that typically attacks the eyes and the mouth in addition to many other areas. But I went on, I saw the rheumatologist, but the rheumatologist kept saying to me, "Are you losing hair?"
And I'm like, "What? No, I'm not. Why? Why should I worry?" And she would say, "Do you have lung infections?" And I'm like, "No." Or "Do you have any chest pain?" Like over and over she would ask me these things. And so I would be like, I would go home and figure out why is she asking me this? And I figured out that she was looking for markers or symptoms of lupus.
And this went on for a while until one day I had a test, a blood test that came positive in and she was like, "Okay. All right, all right. I got to send you to a lupus specialist." So that's where eventually I was diagnosed with lupus. But I say I've had lupus for as old as that daughter of mine is because I know lupus was triggered from a tough pregnancy.
And ironically and terribly, only five months after I was diagnosed, my oldest daughter, the one that gave me such trouble in pregnancy, she has lupus as well. Because she looked just like me. Now her marker, her fire was mono, she's just like my twin.
Understanding Lupus and Its Impact
Amanda Chay, MA: So that's how lupus, and so the readers, or the listeners want to know about lupus, it's an autoimmune condition that's both chronic, it's incurable as they all are, and it's when your immune system goes haywire and attacks the healthy cells, organs, tissues in the body. And so what's unique about lupus is that it can be as special as your thumbprint, meaning it is unique to you.
For some, we might have this typical rash, butterfly rash. For others, they may lose a kidney. They actually may lose their life. So lupus is very widespread, very systemic, and the inflammation can affect all parts of the body. Okay, I know that was really long, but this kind of helps you to talk about it, of what I went through. I'm not a normal case of it, but usually it takes between five to seven years to get a diagnosis of lupus.
Kara Wada, MD: Similar to so many of our invisible illnesses where it's really having to have- I phrase it in the office as putting my Sherlock Holmes detective hat on and parsing through this usually pretty long history of symptoms. And I think, one of the things that I want to go back to that you've made mention of is realizing in hindsight, it's almost like you're pulling back the layers of an onion of "Oh, that, that was that," like putting the two things together. Even this past summer, when I went to the Dysautonomia International Conference and I'm sitting through one of the lectures and I'm like, "Oh, that's why that happened in med school. Huh. Who would have thought?"
Amanda Chay, MA: "That's why I was low on vitamin D when I lived in Florida, which makes no sense." Yeah.
Kara Wada, MD: Yeah. It's like these little, like these little gifts that keep on giving of further understanding of our bodies and how they're misbehaving.
Self Awareness in Managing Health
Amanda Chay, MA: That's true. And that's one of the things I really wanted to touch on the book was the idea to develop self awareness. Be so in tuned with your body that when you know a little thing is off, you don't have to jump and react. You just have to pay attention and make little subtle changes. Because usually, I was just saying this in yoga last night. I teach yoga. And I was saying, "Look, you got to learn to listen when your body whispers because if you only listen when your body yells, you will get injured and you will get hurt and it'll take a long time." But if you listen to the whispers, ah, that's when the sweet spot, you can make those little small changes.
Kara Wada, MD: I think that that has been really such an integral part of my journey too. So I feel like at least how I was raised and I think this is common for many, we were like, raised to ignore so much. Ignore intuition, in medical training, ignore the fact that you're hungry, or have to go to the bathroom, or you're exhausted, like, all of those mental and physical cues. And it's almost like this great unlearning that you have to go through to
Amanda Chay, MA: Yeah, I like that. Yeah.
Kara Wada, MD: To understand, "Oh, yeah. If I push this, I'm gonna be hurting."
Amanda Chay, MA: Yeah, like 'What doesn't kill us makes us stronger.' I like the song by Kelly Clarkson. I think, yeah. And I be teaching group fit to teaching yoga, which I do yoga now primarily, but in the group fit, I'd be, "Push through! Come on, 10 more!" And yoga, I'm like, "Don't push through, pay attention to your body. If it doesn't feel good, if it hurts, don't do it." All these things are very different. So I like that you said that. That makes a lot of sense.
Kara Wada, MD: Do you have any advice? Through, both your, all of your experiences, but both in fitness and also in this chronic illness realm, one of the questions I get asked all the time is like, how do I know how far and how much, because I want to keep improving and yet sometimes I overdo it.
Amanda Chay, MA: Oh, yes. It coming from someone, I have worked out since the age of 18. So that's 30 years I have worked out constantly. It is in my blood. I wake up each day I'm like, "When am I working out?" But my workout now is vastly different than in the past. There's no running. It's walking. Again, I would point back, what advice I would give is greatly to point back to paying attention to your body.
Now, certainly I know with lupus and I imagine for most other autoimmunes as well. When I do a workout, it's not necessarily that night that I'm like, "Ooh, that was really hard. I went too hard." It's maybe it's not even day one afterwards, maybe it's a second day that I'm like, "Ooh." So we have to be aware that it can take up to a week to notice the impact of our workout.
And as much as the younger me would like totally give side eye and flip a middle finger at me, I would say to go slow. Right? I would say if you don't know how to work out, hire a trainer. You're going to be so much better space because they're going to... get a trainer that you know is good, first of all, because there's trainers that don't follow the form. Go to the gym and watch them. Do they line up their people? Do they keep a close eye on the people that they care for? So work with a trainer. If you're brand new, you always have the option to go higher and to go harder, but you don't always have the option to back it down if you've gone too much. So I think for me, it's just the awareness and the fact that anything is better than nothing. Going and walking outside, getting up from your desk. Make a timer. Go every five, take five minutes out of every hour. Go walk around your house. Go walk outside. Doing something is better than nothing.
If you don't like yoga, no problem. Maybe you do some stretching. That's fine. Maybe watch TV and stretch. That's fine. I go and when I'm not at the gym, I'll go and lift weights and I watch YouTube or I watch Netflix. Like for me, it just makes it easier. Like you need to get rid of the ideas of what you think you should do and instead do the things that are best for you.
Kara Wada, MD: Yeah. Sometimes folding laundry and doing some arm weights is my time to watch my guilty pleasure, 'Selling Sunset,' trashy real estate TV.
Amanda Chay, MA: And if it makes it easier for you to do any of those things, great. I think we just have to let go of what these expectations are.
Anyone with chronic illnesses or autoimmune diseases knows that what we envisioned for our future greatly changes when we have that diagnosis. And so we have to be kind to ourselves and we have to know. Okay, you want to climb Mount Kilimanjaro. Okay. All right. We're going to have to break that down into really small pieces. Yeah. Maybe we start small and see how it goes.
Kara Wada, MD: Yeah. Go to maybe the Hawking Hills for an Ohio preference.
Amanda Chay, MA: Yeah. It doesn't mean that you can't do what you want in life, but it does mean that the path to get there and your trajectory for it does change and you just have to be, there's a lot of flexibility demanded on someone who gets a diagnosis and that's sometimes sucky.
Kara Wada, MD: Yeah. One of the things that I love so much about your book is how, well, one, I love your sense of humor and your little, they're like, I know you sent along some stickers as well, but like little images and graphics throughout that just had me in stitches. But also this very holistic approach and view of health.
Role of Medication in Managing Autoimmune Diseases
Kara Wada, MD: One of the things that you really share so much vulnerability with is your reluctance to initially use medications. So I was wondering if you'd share a little bit more about that. Because again, these are like common conversations that I'm having.
Amanda Chay, MA: I bet you have.
Kara Wada, MD: Know that you are not alone. And I've had those feelings too.
Amanda Chay, MA: Yeah. In fact, I had a long talk with a girlfriend the other day, whose Sjogren's was saying the same thing. I don't want medicine. So with me, when I was diagnosed with Sjogren's, it's a similar medicine that they wanted to put me on that I have with lupus called hydroxychloroquine or Plaquenil and I'm like,
"Huh! No, look at me. I'm just fine. I don't know what you're talking about, whatever. I'll just use some eye drops and I'll take some ibuprofen and I'll be fine."
Right? That was almost a decade I did that. Until I had the lupus diagnosis. One of my bestie, my college roommate had said to me just before, "Well, what harm would it be to take the medicine?" and so of course, I get through my things and then she's, " Well, wow. I wonder if you'd taken it a decade ago, I wonder if that would impact where you are now." And it was like a slap across the face. And I'm like, "Oh, you're so right." So for me, one, trusted by physician. Because if I didn't trust my physician, I should go find another physician and if I trusted that physician, if they suggested a path that was right for me, they gave me time to look at it and I decided, and I just get to know that perhaps that physician knows more than I know. And the other thing I had to wrap my brain around was the fact that this medication could actually make me feel better, have a longer prognosis. I'm the mother of adult daughters, but nonetheless, I want to be around as long as I can. And so that means protecting myself now.
So I just really, it was only a mental game that I went through. "I feel fine now. Why do I need something?" But we forget what it is like to feel normal. And so we make our own version of, "Oh, I'm okay right now," but we could be so much better. And if we just begin to open our brains to the fact that there's other ideas out there, that perhaps our thinking is not the best, then maybe we might proceed. And, or not. Like I wasn't telling anyone to take a certain medication, but I was, as very adamantly saying, "Oh, take your medication," because that's a problem. People don't take it enough. If a doctor gives you a prescription, take it. And if you're not going to take it, tell your doctor. Have that conversation. And not just practicing medicine on your own because we, as lay people, don't always know what medications are best.
Kara Wada, MD: And along with that, I think the other question you're alluding to is like what may happen if you don't take it, what are some of the potential consequences of uncontrolled inflammation or the disease process that we want to make sure, and in a perfect world, we're doing a great job of this, but in our broken system, sometimes things aren't perfect. Most of the time they aren't perfect. I'm saying, okay, here are the risks and the benefits of the medicine, but here are the risks and the benefits of not taking the medicine too. And being able to take all that information and then having your autonomy, because that is so important. But being able to do that from an informed point of view.
Amanda Chay, MA: Yeah, and I think a good physician, I've had some good physicians, and I've had some, "Ooh, we will never go back to that physician." But a good physician will be like, "I would like you to consider medication X. Here's what X does. Here are the benefits. Here's how long it takes in order to get there. Here are your risks of taking X. I want you to read up on X, and when you have made a decision, please let me know." Those are the good physicians that I have had. Not " I'm going to give you, you have this, this is what you do and go this way." That, I've had that, but that's not the way it works. A good physician does that.
And then you also, as an advocate for yourself, you say, "Okay, if I don't take this now, what are my consequences? Are there other, any alternatives that you suggest now?" Yeah. A good physician will be open to those things. They won't feel defensive. They will listen to you and help you determine what's best for you.
I think we think our physicians are like there to just tell us to what to do, but I really feel that our physicians care for us. And when they care for us, we have to give the same care and respect back. It's a two way street. I don't go in there and bark at them, nor do they bark at me or no one's helping anyone.
But I don't think we often talk about that idea about our physicians really do care for us. I know you're a physician, but I'll tell you, the non physicians, we often think that like, when I see, I think I put in the book, my current physician had come in all upset because one of her patients had just died. And just to see her so upset, it was just really touching. Oh, they care, but just to see it on that level it's just, it brings you back to the fact that they just want what's best for you. They wouldn't lead you astray.
Kara Wada, MD: I think that so often we are trained to, in many ways, keep the very professional facade and keep our emotions in check. But what I've realized over the last decade plus of really learning the practice of medicine through training and through my big girl job is that it's those moments of vulnerability that you share with the other human across from you that really is, I don't know, I feel like that is healing in its own way too.
Amanda Chay, MA: It is. Yeah, I remember my physician called me once and said, "I'm worried about you." And I'm like, " What? You're worried about me? Wow, I must be really bad if you're worried about me."
"I was thinking of you last night." I'm like, wow, like those things. I mean she Yeah, I mean she's being vulnerable, telling me that she's that and I'm like, I think I'm sure in medicine, they tell you, right? It's really hard for you to be attached to your patients. They die, things move on and I would imagine, it's like love, right?
My favorite quote in life is, "At the end, what matters most is how well have we loved, how well have we lived, and how well have we learned to let go." If we think of it like that as a physician and as a patient, our life is what we give.
Kara Wada, MD: Oh, I like that. I'm going to have to go back and jot that down.
Amanda Chay, MA: I will text it to you. Buddha said that. It's beautiful. It's beautiful.
Holistic Approach to Health
Kara Wada, MD: Let's talk a little more about your kind of holistic approach to health. We talked a little bit about in the exam room, but that's just scratching the surface of what you've talked about. And I think this is where we really resonate when we've chatted before, too.
Amanda Chay, MA: Yeah, yeah. I think the idea is that most of us think, in order to be healthy, we should work out and we should eat more broccoli. Okay, that's only two pieces out of an eight piece puzzle. Our health has so many different things. I believe there's at least eight components of your health.
There's emotional health. I won't go through all of them, but just so you can see, there's some social health. There's financial health. There's spiritual health. And then, when we think of these pieces like a big piece of a pie, and we only deal with a few little pieces of the pie, we leave a whole other chunk out there.
So yeah, you can eat broccoli, and you can exercise like crazy, but you can have road rage and want to run over a squirrel and yell at your neighbor and not deal with all these other things, right? So that's not really healthy. So when we talk about holistic and we talk about integrative, these kinds of things, I think of all of these things.
And then that means, "Oh man, do I have to do all these other parts of your health?" And I'm like, "Yeah, I think they're pretty important." I don't think you can separate one from the other. And we've all been in the experience where one area might be really good and we're sucking in the other. We feel really off kilter or out of balance.
Kara Wada, MD: And I would say, we don't have to do all of them at once.
Lifestyle as Medicine
Amanda Chay, MA: No, no. They often weave in and out. I think when I was growing up, there used to be these dangerous teeter totters, the big metal ones. You would sit on one end and your friend would sit on the other and you'd wait. Your friend would jump off and you would slam to the ground. There were always broken fingers or broken feet. I don't know why they're not around anymore, but I think that when we think of life as like that teeter totter, we're not usually at one end falling to the ground, we're not usually at the other, and we're not balanced in the middle, we're almost always going back and forth and the same is with our health. Yeah, we don't deal with them all at once but perhaps throughout the day we can incorporate small healthy habits that will sustain us that we don't even have to think about and we do them every morning. We drink our tea and we don't do anything else, but just drink the tea or every day we walk our dog. We do these things and so we begin to see that these small habits stack up and in the end they end up being perhaps the biggest thing of them all. It's not that Kilimanjaro, it's not that marathon, but it's what you do every day.
Kara Wada, MD: It's the idea of using our lifestyle as medicine.
Amanda Chay, MA: Yeah, absolutely. Yeah, because lupus and just like all these other chronic diseases did steal away a big chunk of my health as they did with other people as well.
But they didn't take all of it, and the healthier I am, the more manageable my lupus will be. There is a direct connection there, and so I still have choices that directly and greatly impact my health. And so I'm going to make the best out of them because I want to be around. I want to feel as good as I can feel. And I have control over that.
Kara Wada, MD: And it all leaves back to that initial idea we were talking about, that self awareness of taking note of what does make you feel better. What does, what are those green flags and red flags that you talk about?
Amanda Chay, MA: Yeah. Yeah. We were talking about it in the book. I was talking about a flare, how things that I do, like stress is a big one, not getting enough sleep or travel is one. And those are noticing what the red flags are, what really pisses off your body, what really makes your mind all murky. What are these things that you know, like staying up really late. Okay. If that affects you, then how do we alter that? How do we still go out, hang out with your girlfriends, but maybe not stay out as long.
Maybe you have one drink. Maybe you say, "Hey guys I'm going to be home at 10 o'clock" and you do that. So you still can enjoy you, but you know when not to push past your limits.
Kara Wada, MD: Yeah, I will say one of the things that I had to grapple with, too, is I think, there have been a few things along the way that I've realized are red flags for me that I didn't necessarily want to believe were red flags, right? Like for me, alcohol was one that was driving my anxiety. It seems to contribute to my pain and it's "Well, damn, I like that glass of wine." Right? But in the end, I've realized this last six or so months without, it's this relief of not, I've made this mental decision that it's just not serving me and it's just not, it's not an option on an everyday basis and that's nice.
Amanda Chay, MA: It reminds me of Anna, who is 23 now. She went out drinking with friends cause she wanted to, first of all, she's got half Asian in her. So she's got the Asian flush. So she's got, she's allergic to alcohol. So one, and then two, she goes out drinking with her friends because she wants to, because she's 23 and she lives in the city and she wants to do those things and then she has to pay for it for days. But for her, she knows that she wants to do that, so she just has to suffer through it. I would like her to see the wisdom you have in a few more years, but then again, her path is her path. And as a mom, I just have to support her the best you can, best I can and how she wants it. It's not how we always want people to show up. We can't control that. We can just do what we can for ourselves.
Kara Wada, MD: Yes. As much as we want to change someone else's behavior, it's not, it's not in the cards.
Amanda Chay, MA: Yeah. And it is really hard as both a lupus person and a mom of a lupus person, which I know are the most common things, but it's the best of times and the worst of times. Isn't that Charles Dickens? I think, Yeah. That's how we are. Like, I'm so happy to have her. I'm so happy to support her, have her support me. But then at times where I'm like, biting my tongue.
Kara Wada, MD: So hard that it's bleeding.
Amanda Chay, MA: Yes. But it's the best.
Embracing a New Identity with Chronic Illness
Kara Wada, MD: As you think about in writing this book, if there is one, is there one other lesson that you would love to share?
Amanda Chay, MA: Well, the first lesson we talked about is your health is still in your control. Everything you do makes a great impact. So that's the first one. And the second thing is just from my experience, when I was diagnosed with lupus, it became like this Mr. T necklace, it was heavy, it was around my neck. I couldn't take it off every morning. There it was. It was clunky, it was hanging, it was scraping me up. It was like lupus. Everything I did was because I was someone who had lupus. Like going to the grocery, you'd be like, " Don't offer me those plastic bags. I have lupus. Don't you know I need paper bags?" So that's what I would tell the people I would like to understand is that you are not your lupus. You are your own. You're not a mom. You're not a daughter, an entrepreneur, and you're not any of these things. You are you first. And that is really important. At the root of who we are, our soul is what we have. And all those other roles just get in line behind us. I'm hoping that lupus gets way in the back once it becomes more manageable for the people who have it, or for people who have other chronic diseases, and see that they are themselves first, and how do they prioritize who they are and what they need.
Kara Wada, MD: That's so important, because it is embracing that new identity as you continue to evolve that really, that's what pushes you into the behavior change too. Because you think about kind of like all the behaviors change and psychology behind all of it and it's envisioning yourself as that new version of you that pushes you through those rough spots. And when I was letting go, it was huge.
Amanda Chay, MA: Oh, it is very, yeah. In letting go of who you thought you were going to be letting go of all these other roles. When I was writing the book, it was very cathartic. I had no idea. I felt like I was in intensive therapy with myself. You could see me like crying at times, wiping away tears, typing things up. It was a similar type of thing. Like when I would write about boundaries, I would have to check myself. Like how am I living up to these things that I am telling other people to do in their life? It's the same thing that you just talk about. Like how do I live my best life? How do I do my best me while not stepping over and harming anyone else? There's a saying that I always love that says, "Do no harm, but take no shit." So it's the same, like, "How do I do that while being the best me?"
Kara Wada, MD: Yes. This has been wonderful.
Amanda Chay, MA: Thank you.
Kara Wada, MD: Thank you. Where can people, tell everyone about the book 'The Girlfriend's Guide to Lupus.' I have my blur on so we'll look at yours Because it's a beautiful cover.
Amanda Chay, MA: I conveniently have it right here.
Kara Wada, MD: Perfect!
Amanda Chay, MA: 'The Girlfriend's Guide to Lupus' can be found on Amazon and you can find it. My website is amandachay.com and then I'm on Instagram at amandeachay.
Kara Wada, MD: Perfect. And we'll make sure to have all those links in the show notes as well. If people just want to click, click, click.
Amanda Chay, MA: Yes.
Kara Wada, MD: Thank you so much. And if people want to check out more, you also shared at our recent Demystifying Inflammation Summit. So we'll have.
Amanda Chay, MA: Yeah. Yeah. I'm on there about 'How to be Your Own Bestie Advocate' and I'm on make some YouTube videos and put them up as well. So I think there's lots of different ways you pick a way that you want to learn and there's some information out there for you.
Kara Wada, MD: Perfect. We got writing, we got listening, and we got watching.
Amanda Chay, MA: That's right.
Kara Wada, MD: And then you all are empowered to go take the action.
Amanda Chay, MA: That's right. Pick what works for you.
Kara Wada, MD: Thank you so much, Amanda. This has been wonderful. I can't wait till we get to chat again. Hopefully soon.
Amanda Chay, MA: Yeah, yeah. Thank you so much. I'm grateful for your time you have today and certainly in your busy voting schedule.
Kara Wada, MD: Good. We got it done and we're going to make sure dad does the same or my husband after work today.
Amanda Chay, MA: That's right.
Kara Wada, MD: Go Ohio.
Amanda Chay, MA: Yes, that's right. Go Ohio.
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Remember every five star review and every word of encouragement counts, it's like fuel to keep us creating, innovating and striving to make your listening experience even better. So if you're up for it, show us some love by leaving us that virtual high five in the form of a five star review today.
And a huge shout out to all of you who have already taken the time to do so.
Thank you for being a part of our podcast journey and we can't wait to keep bringing you more amazing episodes in the future.
Until next time, keep shining and keep listening and keep on building that confidence in yourself and your immune system health.