Girlfriend's Guide To Lupus

Discover the unmasked realities of lupus with Amanda Chay, the brave voice behind the Girlfriend's Guide to Lupus, in an episode that's as heartfelt as it is insightful. Amanda doesn't just share her story; she opens the door to a world where autoimmune challenges are the norm, not the exception. From her own two-decade struggle to a diagnosis and the emotional rollercoaster that ensued to practical advice wrapped in humor, this conversation is an intimate exploration of resilience and self-advocacy.

Navigating life with lupus is no stroll in the park, and Amanda's candid accounts of managing energy, handling flare-ups, and the complexities of the healthcare system underscore the daily battles faced by those with chronic illnesses. Yet, amid the trials, we find moments of levity and a treasure trove of strategies for anyone walking a similar path. The power of a supportive community emerges as a beacon of hope, with pragmatic tips on building your own "squad" and facing those inadvertently insensitive comments with a touch of witty repartee.

Wrapping up with a stirring message of empowerment, Amanda illuminates the journey from identifying with an illness to embracing the full spectrum of self. We unpack the myth of 'hidden secrets' to managing lupus, advocating instead for the potency of small, consistent daily choices. This is not just an episode for those with lupus but a call to all who seek the courage found in self-acceptance and the transformative impact of understanding one's true identity. Join us for this enlightening dialogue and find out how to connect with Amanda and her powerful guide for navigating the turbulent waters of life with lupus.

Amazon: https://www.amazon.com/Girlfriends-Guide-Lupus-Control-Diagnosis/dp/B0CK3M4VVZ

Instagram:  @amandaechay
Website:  amandachay.com

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Transcript

Speaker 1: 0:42

Hi my Spoonie sisters, it's your host, gracefullyjen, and today I have the pleasure I'm sitting down with Amanda Che, the author of the Girlfriend's Guide to Lupus. I'm so excited to have her share her story and her book with you. So, hi, amanda, how are you? Hello, thank you so much for having me here.

Speaker 2: 1:02

I am doing well.

Speaker 1: 1:03

I'm so glad to have you and I just I can't even wait to dive in here. So I want to say real quick that this was such a treat. Thank you for providing the book to me. It was an honor to read it and you're amazing.

Speaker 2: 1:17

Oh, thank you, thank you. It was almost like I was sending people nudies, you know like of me when I first, when I wrote the book and I first sent it to my editor. It's literally like I sent a whole full version, close up, zoomed naked picture of me because it felt so raw and so vulnerable and I had no, you know, I hadn't written anything before. I never knew if I would be. She would laugh at me and say you need to, you know, go into a new field. So I, to hear that someone found value in it is really heartwarming to me.

Speaker 1: 1:50

And I think we need more of this. We need more of this in our community and in our lives because, you know, sometimes we see that surface level of people but we need that real and that raw kind of scary close up of our lives what people are dealing with.

Speaker 2: 2:06

Well, yeah, I think I think that's one of the reasons why I wrote it. I think in the very beginning I said like look, I am just like you. I have I screw things up, I don't know what to do, but sometimes I do the right thing and I've learned some of these things. So I just want to share it with you, Like I didn't want anyone to think like I was better or I knew any better or my movements was any better than anyone else, so there was just a few different nuggets I found along the way and it helped me, so maybe it'll help them.

Speaker 1: 2:30

Absolutely, and I love that. So I want to dive in here and ask you a couple of questions here. So can you share a bit about your, your personal connection to Lupus and what inspired you to write a book on the topic?

Speaker 2: 2:44

My journey with Lupus is a little different than most other people's. While it takes typically between five to seven years to get a diagnosis, my story was mostly probably about 20 years long. And that's because when I was pregnant with my first daughter her name is Anna it was a I mean, it's my only child at that time a terribly rough pregnancy, very, very sick, many, many hospitalizations, and it was just like a fight for my life. But never once did anyone say like what the hell is going on with you? This is so weird.

Speaker 2: 3:13

I had her and I continued on and I would just start blaming all of these things like joint pain or mouth sorts. I would just blame it on me being brutal on my body right and like some crazy workout person. And only when I ended up you know she's about 15 years later, ended up in North Carolina, when I was really in a lot of pain, did I go and get help, first from an ortho, because I thought it was an ortho thing. My knees and my hips and my heels and ankles, they were hurting. So of course it's ortho. And the doctor was one of these like oh, oh, you're just getting old.

Speaker 2: 3:52

And I'm like, screw you, buddy, I run some blood tests and that's when I was diagnosed with my first autoimmune disease called chogrens, which typically attacks the cells moisture cells in your eyes and your mouth, and I was like, oh no, this is very serious. Not the hair, you know, I could put up with anything else. And that's when I eventually got the diagnosis of lupus. So it took a long time. I just think I'm not a normal case, but it is a very challenging disease to diagnose. Okay, so my question next is did all your hair come back.

Speaker 1: 4:25

I mean, you have beautiful hair. Thank you, it did come back.

Speaker 2: 4:33

Now I've learned I once heard a rheumatologist say that losing your hair is your body's way of protecting itself when it's being harmed, right, so think of like not having a period or your hair shedding, like the body's like look, this is not essential, we need to just preserve. And so I like to think of it like that, and that makes a lot of sense to me. So, yes, hair has come back, but it will have its moments when it likes to, you know, fall out at great amounts, and that just means I know I'm in a flare.

Speaker 1: 5:07

I think that's a really good way of explaining it, and I wish my doctors had explained that to me because that's been my journey this year.

Speaker 1: 5:15

And a lot of people see that I have this long hair that they don't see in the back what's going on? And the underneath I used to have very, very thick hair and now it just feels. It feels like I have baby hair. I don't know. And it feels different, doesn't it? It does, and and so it's coming in white, which they told me is normal. So I don't know, I know like after a chemo?

Speaker 2: 5:39

have you seen people who've gone through chemo their hair? Sometimes it changes texture, it changes color. Yeah, I have noticed that about my hair too. It's just I mean, I'm grateful that it's here. It's just not the same, right. You know your hair and I'm like okay.

Speaker 1: 5:53

Yeah, and you know, I'm kind of jealous of the people that have it coming curly, because I would be okay with that If I could ray curly. That'd be so cute. I'd be okay with that.

Speaker 2: 6:02

Yeah, I know right, just keep the hair, please. Yeah, okay, the tricky thing about lupus is that it's considered heterogeneous, which just means versus homogenous, where it's like maybe more targeted to an area. Lupus being heterogeneous means it can go throughout your whole body. So some people have a rash, some people lose hair or mouth swore, and some people need whole new organs because of the damage of lupus. And still, unfortunately, people continue to die. I somehow get this Google alert on lupus and last week, I think I cried twice because there was a 27 year old who died of lupus and then a 48 year old who died of lupus, and it is still a very chronic and curable disease. That did I mention that my 23 year old now has lupus too, so as a mom, it's really rough.

Speaker 1: 6:53

So okay, I'm assuming since you have the diagnosis for your daughter, it probably went a little bit better going with the diagnosis dress and I want to say everyone, if you look at the front of the book it actually says for my daughter, anna, who has lupus and is totally a badass.

Speaker 2: 7:12

She is yes.

Speaker 1: 7:14

Yes. So how did that feel as a mom, seeing your daughter go through this?

Speaker 2: 7:22

I am at. One, I'm working on a lot of therapy for me. Two, I would have never harmed my daughter if I had a choice, and so that allows me to say three it sucks. It's terrible that she has the diagnosis. It's clearly she got it from me. I would have never wanted to give it to her, but it's what we have. So I allowed myself to not hold on to the guilt of oh my gosh, I gave her this, and instead now turn to the point of I have a bestie that I share my lupus with. When I'm down I can call her and be like I hate this lupus or I hate what's going on, and she can do the same for me. So I do think part of my reason to get a little philosophical, but I think part of my reason I have lupus, was simply to support my daughter in her journey.

Speaker 1: 8:08

That's beautiful, that's absolutely beautiful, and what a great support system you are for her.

Speaker 2: 8:15

Oh yeah, I'm like have you read my book? When she'll say certain things. I'm like, have you read your mom's book? Turn to page 42, and she's like I haven't read it yet. I mean she has now, but it took a long time. I'm like I know a little bit. Please just listen to me, but I know her journey is her journey and she has to define it certain ways.

Speaker 1: 8:34

You sound a little bit like me. I've actually hounded my daughter saying so. Have you listened to the podcast yet? I haven't had this episode for that.

Speaker 2: 8:43

I know I guess I shouldn't have written a book. It's the same. I've taught yoga, and for so many years, and my kids would be like yoga. No, so I shouldn't have done any of that and maybe they would have followed the path.

Speaker 1: 8:56

They never want the things until they want the things.

Speaker 2: 8:59

I know right, they're friends like yoga and they're like yeah.

Speaker 1: 9:02

I'm like, yeah, yeah, yeah. You know, my son's girlfriend is probably one of my big cheerleader supporters on Instagram. She goes and likes I don't know who's I ever make and I'm like, haha, I know right.

Speaker 2: 9:14

At least I got her. Yeah, you know I'm a little bit of a chick. That makes me feel better. You are cool, you're a cool chick.

Speaker 1: 9:23

So in your book, how do you approach explaining lupus to someone who may not be familiar with the condition?

Speaker 2: 9:30

Hmm, well, I will first assess if they are worthy of me giving my time to explain it to that person, which is very true, because the male woman I do like her. I'm probably not going to go launch into a whole thing. I will often give a little bit of information, like this guy. This is a perfect story. This guy at the gym, right, this big meathead, hadn't seen me in a while.

Speaker 2: 9:53

During that time I had lupus. You know, I was really sick and he's like whoa, what happened to you? Because I still have a really, really good muscles. What happened to you? And I'm like you know, I like my patience was low and I just said nothing, you look so different. What happened to you? And I'm like I have lupus now? And he's like, oh, and he just said, oh, well, if you think positively, you'll get better soon. And I'm like you know, then my patience was really thin. You know I wasn't going to tell much and I just said you know, this is a chronic disease and it's incurable. And he's like well, you should try harder and you can find it. And then I just I think I just gave him a look and I walked away.

Speaker 2: 10:33

So someone like that, I'm not going to waste my energy on them. I probably should have never said anything in the first place. That was my takeaway. But if it's someone I really care about, of course I'm going to sit down and explain to him about it, what I know about it, what my challenges may be and kind of what the future would be. But you know, I just feel like I have this much energy in life, right, every day is this much energy, and I am very conscious on how I decide, how I divvy out that energy. No longer now do I hold on to some relationships that I have or do I do some things that I've used to have done in the past, because I'm aware that everything is literally being taken from me and I want to choose where that goes. That's kind of a very different explanation that you may have heard when we talk about Luziz.

Speaker 1: 11:20

You know I think that's a really good point. You know you don't want to waste your spoons on explaining to someone that doesn't care. They don't care. They're going to walk on them throughout their day. They are not affected. This is not going to change their perspective on people or life or anything. It's just a waste of your time.

Speaker 2: 11:37

Yeah, absolutely yeah. I mean I can go on and be like. You know, 1.5 million Americans have Luziz and 1.35 million American women are the ones who have it. But in the end it's all my choice and I can't be mad at that gentleman or I can't be mad at anyone else. It's simply me deciding where and when I tell that. But in the same regards, I do say lupus. There's a lot of unknowns when it comes to lupus. By far the majority of the population has no idea. They'll be like Selena Gomez and sometimes I'm like yep and then that's all we say. But I do encourage people, if they can, to share a little bit about lupus so that people begin to understand what it is, how it impacts people, just because there is a lack of awareness in our community.

Speaker 1: 12:22

When you were going through the process of getting your diagnosis and your answers, did they look at other disease possibilities for you? Was that a challenge?

Speaker 2: 12:34

Yes, it's kind of weird. I was first diagnosed with chogrens, but then I also was diagnosed with neonatal lupus, which is a more rare lupus. That just happens when the mom gives it to the baby and the baby's born and the baby usually ends up perfectly fine and doctors were like you're not a little baby? And I'm like no, and so they just disregarded it, they let it go. So that was probably a first clue that yeah, you had lupus.

Speaker 2: 12:58

But it went through a point where my hands would hurt a lot and my rheumatologist at the time she was lovely and she's like, oh, you've got RA. And I'm like, ok, rheumatoid arthritis. But she's like something doesn't seem right. So we would continue on a path until one thing would be found or another. When it comes to the American College of Rheumatology, there are 11 criteria for diagnosis and you need to have four out of the 11. And my doctor I think she did the best that she could at the time, but she was waiting for this one blood test, called an A&A, to be positive before she sent me on to a specialist, because there is not a blood test when it comes to lupus. So that's part of the reason why it's so challenging to get that formal diagnosis and why it is often confused. It mimics many different disorders. It can mimic a flu, it can mimic a dermatitis, eczema, and that makes it even more confounding when you get into a diagnosis process and the frustration that comes with it.

Speaker 1: 13:56

Yeah, and while you were talking I went and opened the book because I was like I remember there's a section where you were talking about this and it talks about the most commonly felt and you list fatigue and pain and rash and fever and hair loss and all the things. And I can't pretend that I would love to be a rheumatologist because some of these illnesses they mimic and flatter each other and my first rheumatologist not great.

Speaker 1: 14:25

And I was handed three pamphlets. As I'm walking out the door, I'm looking through them, going OK, so I have something, and it's either RA, lupus, and I don't remember what the third one was. But I was like that doesn't sound like me. So I was just looking at the RA and the lupus, going OK, which one is what I have? And it was a year later that I still didn't have an answer. And that was when I said it's time to see a new one.

Speaker 2: 14:50

Yeah, yeah, yeah. There's a lot to say through all of that, but most people should know the listeners would probably want to know that it's really hard to get into a rheumatologist. We wait. Even I'm in a great city I'm in Raleigh and Durham and there's Duke and the University of North Carolina, some great systems here and I waited eight months to get into my current lupus rheumatologist and she's awesome, but it took eight months. Can you imagine feeling terrible for eight months and just waiting and waiting, when each day is simply a challenge to be like? Can I make it through this day?

Speaker 1: 15:24

Absolutely, and it's unfortunate that so many people go through that and it just breaks my heart. It breaks my heart, every person that we meet, whether it be on Instagram or Facebook or even in person people that we meet and they are, they're suffering and waiting, and it breaks my heart.

Speaker 2: 15:42

And not everyone is tenacious or has the resources or maybe has the voice to speak up and be like no, that's not what we're going to do. Can you do this? You didn't hear me when I said that I would like you to do this, or I'm not feeling heard or listened to. Many of these things happen to certainly a large amount of women, and when we deal with the idea of pain, gaslighting is very common.

Speaker 1: 16:09

Absolutely, and have you dealt with that before?

Speaker 2: 16:15

Oh, yeah, I mean you're just that example of telling that doctor who you know, oh, you're just, oh, you're, oh, now you're almost 40, you know, at that time is a perfect example of gaslighting.

Speaker 1: 16:25

Yeah, has your daughter dealt with that?

Speaker 2: 16:29

Oh yeah, yeah, absolutely yeah, you're just this. You're just that there were so many things before girl she got, so her. Let me start from the beginning. Lupus has a genetic variation that we know and you need an environmental trigger to pull it off. So me being pregnant, with her really rough pregnancy, brought on my Lupus. For Anna she had mono in college and that's when she became sick and was sick for many years until I was diagnosed. Five months later she was diagnosed. So that seems all easy, but during the time we did know one that I had Lupus and so we didn't know what was wrong with her and she would go to the ER for some of these terrible issues and they would just be like oh you know, it's probably just a UTI or something, you know, just dismiss her and send her on home, and over and over she went and she was like I just feel like I'm going crazy. And you know it was a hard time for her. She's just in college, she's going to have fun.

Speaker 1: 17:23

And to feel like you're dismissed time and time again. You know it's unfortunate. When we do find a great rheumatologist, is exciting to share that with people and to help others that live close to where we are. And you know, I think there's a. There's a girl on Instagram. She also has an app. It's called help spelled H, e, a, l, P, and one. There they have a section where you can actually load in your rheumatologists as a recommendation to people, because they want to build a nice where people can find a good rheumatologist in different states. And what a fantastic idea.

Speaker 2: 18:01

So, yeah, that's working backwards, versus us being like this one's don't go here. Instead, let's just give the ones that are great.

Speaker 1: 18:08

Yeah, what a great way to help people. So, understanding a flare, how would you describe a lupus flare to someone that's not dealt with?

Speaker 2: 18:18

that before I'll give you an example, because I'm I'm still in one, but I'm coming on the tail end where I had COVID about a month ago and maybe a week or so after that. I started with extremely red, not just like, oh, you look like you have a little sunburn, but like you went really crazy on your mom's, you know 80s blush rouge. So I started with a really bad red and burning face that went down to my neck and went down to my chest. And then the second thing that started to happen was I would wake up in the morning in the minute my feet would hit the floor. I would be like, ooh, it felt like I had run in high heels the night before, just really, really sore feet. And then came the sore hands. So for me, I know that those things started to account to all right my body. Lupus is getting high, I think of.

Speaker 2: 19:07

A flare is just a disease activity that is increased. Many different things can bring it on, stress being one of them, which is very common. Change in medication because I had to stay off. I have this medication. I injected my stomach every week. I had to remove that for two weeks while I was on my COVID Paxilubid protocol. So I think these things are what brought it on for me at that time, and they're just usually. Luckily it's not. I don't feel like this is a terrible flare, because anyone who's taken prednisone knows that it is a terrible drug that is not desirable, but it's also a much needed drug. So my rheumatologist and I have a plan to try to stay off prednisone no matter what, and thankfully it's been, I think, about a year that I have been able to not take any of that.

Speaker 1: 19:55

So may I ask what was, what was your reason behind that not wanting to be on it?

Speaker 2: 20:01

They have found that the damage done from the prednisone is not as beneficial as to the lowering of the flare of the disease activity, so that basically, the risks outweigh the benefits when it comes to it. And when I was at a Lupus Foundation conference in North Carolina recently, there was a rheumatologist there and he was speaking a lot about this idea of prednisone and how harmful it can be. So that's just the knowledge I gained from that in my physicians. I had been to Africa last year for a few weeks and I'm like, look, do I need to bring some prednisone, because we know that it's going to really mess up a bunch of things. And so that was our talk, like, okay, how much gabapentin can we give you, so that if you're beginning to feel like this, you take gabapentin and try to get away from all of that pain that comes with it. And it worked. Thankfully, it was the first time I've traveled internationally for a longer period and ended up coming home and being like, oh my gosh, I feel normal.

Speaker 1: 20:55

That's fantastic. I think I actually remember that. I remember that's right around when I started following you and chatting with you.

Speaker 2: 21:52

Yeah, yeah, it was amazing. I was very grateful because traveling is just something important to me. So when we have these diagnoses that do end up changing the trajectory of our life, I don't want to go too far from what I want. What I want to be able to continue to travel. But I know that I'm going to have to make some changes in how I do this, and so that was a good time to make sure that I had everything in place. I had lots of rest involved, extra rest that I usually don't do but in the end, it ended up helping me and I'm grateful for that.

Speaker 1: 22:25

Okay, so what would be the top five things in your Spoonie Toolkit for travel?

Speaker 2: 22:34

Well, can some of them be mental? Yeah, a lot of them are. Like I am a big one on understanding the need for rest. We get to a new place this is assuming, again, that we're traveling, maybe somewhere that goes into a different time zone or something that is far. It's not taking you an hour from here laying on the beach, but it is taking you somewhere else, and so people might not like to hear this, but I do try to put in my very first day of getting there Resting right.

Speaker 2: 23:02

I know you want to get out, I know you want to explore. It looks amazing, but simply staying in the room and getting to bed early or getting a nap in is a really important way to reset yourself on a trip. So that's one that's an easy one. And then anything that you need that helps you when it comes to finding the good sleep is it a good eye mask? Is it a blanket that you love? Any of those aids there that help you with that is an important one as well. Maybe that's one, two, three. It depends on how the person is.

Speaker 2: 23:37

I am not a super organized travel person. I usually kind of like a bowling alley where you would have some bumpers along the side. That's how I like to travel, so when I at least have those bumpers up, I feel more comfortable where I know I'm going to spend the night at a hotel or I know how I'm going to get there, and so that allows me to be less stressed. So maybe that in that area that comes to someone, maybe they want to travel everything planned out, maybe they want to travel a book that they come with, or maybe they're okay with being flexible when it comes to the portion Two, more oh, man, who are we out?

Speaker 2: 24:12

of Two more. Okay, two more I'll make. These are kind of the base on health and wellness. One would be some type of water receptacle, yep, water bottle, whatever it is. When we get out of a, we get in a new schedule. We often don't drink nearly as much water, so take something, make sure you fill it up P all you need up a storm. And then the last one would be try as best as you can, even though you're in a new place, to eat the way you know that you need to eat. You know that that is best for you. Sure, absolutely, try all those good things that you want, but kind of follow that 80, 20 rule the best you can. Maybe this is your time you know 80% good and the 20% let's go crazy and enjoy that stuff. I think all of those things together allows you just to roughly stay similar to how you function through your everyday, but just giving you a little bit of a buffer to help support you along those changes.

Speaker 1: 25:07

I think that's a great list. I love it. I hope everyone's taken notes.

Speaker 2: 25:11

Yeah, yeah, take notes, because I might not remember that. Okay.

Speaker 1: 25:17

So my next question, chapter eight, you talk about your squad goals and building your ultimate support posse. So how do you go about doing that? You?

Speaker 2: 25:29

have to be a choosy chick, you know. I think I said something like the girl you used to play in the P and the kiddie pool when you were a kid with. Maybe you don't need to have her in your support group if she's no longer there for you. So I think it's a close assessment of who your family and friends are. Do you like them? Do they build you up? Are they there for you? Are they supportive? Great, you can put them in choosing how you want.

Speaker 2: 25:56

I mentioned creating a support caucus just a fancy law word that just means like a group of people that are meaningful to you. I had suggested, when you get a loop of diagnosis, to bring these people together, sit them all down or pull up a video and tell them exactly what you're going through now, how you feel now, what your future may look like, and then how you're going to need their support. The best time to ask for support is when you don't need support. The best time to plan for a flare is when you don't have a flare, because when we get into this point, they take too much energy to try to figure all of these things out. So when you say, find your squad goals, get the best people you can. That's exactly what I mean. Fill them in on the loop and most likely they will be there.

Speaker 2: 26:42

In fact, I think that we don't want to bother. I don't want to bother. I can see my neighbor, pat, right there. I want to bother Pat. She's busy. I don't want to ask her to just go get some milk for me or whatever it is, but these people are so excited. What can I do something for you? And if you're like, yeah, can you bring me some soup?

Speaker 1: 26:58

They would be gung ho to go do that for you 100%, it's true, and you know everybody needs that soup, friend, we all have one. We all need to have that in our back pocket, because there's times where we really need that. There's only so much we can do to care for ourselves at times, and we do need those people that are there to jump in and bring the soup or do the things. Yeah, and we don't feel good.

Speaker 2: 27:23

We usually don't take great care of ourselves because we're busy doing something else. So if someone wants to care for you, they love you Great, love them. I think it's really our issue to be like, no, but in fact it's not there. We would do the same, would you not, if your neighbor is like hey, jen, feeling terrible, can you help me out? You'd be like God, you know, we'd probably go way overboard, of course, we would be there, absolutely, absolutely, especially because I have some elderly neighbors.

Speaker 1: 27:49

I'd be like, ok, what can I bring? What store do you need me to go to? I'll show you your sign. Got some flowers.

Speaker 2: 27:55

Got bread, I got you some movies. I got you some magazines.

Speaker 1: 27:58

Yeah, yeah, absolutely OK. So in chapter eight you also have and I love this. I hope you're OK with me sharing this you have a list and it's common things people say and the snarky responses oh yes, oh, my goodness, ok, do you mind if we go over a couple? No, let's go, ok. So stupid comment. At least you don't have X, y or Z. So the way the response would be thank you for pointing out the fact that you don't feel I am sick enough to deserve your care and attention. I'll just remove you from my supporting list, or support list Absolutely, yeah, absolutely. Yeah, that's a great one. Do you have any of these memorized off the top of your head? No, but I can look them up in my book. You read them, ok, ok, I just didn't know if you wanted to share them too. Ok, stupid comment Girl. Just keep positive.

Speaker 2: 29:01

That's always great.

Speaker 1: 29:02

We all hear that a lot Really here we have a response.

Speaker 2: 29:09

Oh, fuck off, is that positive enough for you?

Speaker 1: 29:12

I love it. I love it. Have you tried yoga, paleo or CBD?

Speaker 2: 29:20

Have you tried minding your own business? That works well too, oh my gosh, I love it.

Speaker 1: 29:26

I think you did this like 11 years ago.

Speaker 2: 29:30

Well, you know, it's kind of like when someone pulled out in front of you in your mind you want to just hit them with your car, right, you're just like oh, you just want to hit them. These comments are kind of like the same. You know, you want to just throw that back. And sometimes, after they leave, you're like yeah, I wish I would have said that to them. So I wanted you to just supply them up front. Yeah, you're going to hear these people say those things and you've probably certainly heard oh, but you don't look sick. Oh, you look so good. You look so like. Oh, you look so good. And I'm like sorry, I don't look bad enough for you to get your attention and to get your sympathy. I'll try to look worse next time.

Speaker 1: 30:03

I don't know what to tell you. Yeah, yeah, absolutely. I went to work one time and one of my coworkers actually asked me if I came straight from the gym. Yeah, I looked that bad, huh.

Speaker 2: 30:17

Thank you.

Speaker 1: 30:18

Nope, just having a rough you know flare morning.

Speaker 2: 30:20

but thanks, but what about you? Did you go to the gym too?

Speaker 1: 30:24

Oh, mm-hmm I know, yeah, thanks for that.

Speaker 2: 30:29

Thanks for that. Yeah, I think that the thing that I have learned that's been helpful for me here is, if you've got someone, if you don't know what's going on with them, you don't have to ask them what's going on with them. They simply say how are you doing today? Someone's lost a loved one, someone's been sick, someone's battled cancer. Just not how are you doing, but just how are you doing today? That allows them to share what they want to share. That allows us to focus on the urgency of just the current moment.

Speaker 1: 31:02

Sorry, I'm still here. I was just going through more pages trying to decide what to ask you next. Whatever you want Okay, so who's your ideal reader? Do you encourage people?

Speaker 2: 31:17

who do?

Speaker 1: 31:17

not have lupus to read this as well, Like I have rheumatoid arthritis, but I still felt that this is such a good book that anyone with a similar autoimmune condition should definitely read. But who is your ideal reader?

Speaker 2: 31:30

The ideal reader, I would think, is someone who is newly diagnosed with lupus and doesn't know anything about what they're going to face. Because when I was diagnosed, I knew no one and I felt really alone. And my family was, you know, they were there for me but they had no idea what I was up against. But it's funny you said that because I was downstairs doing dishes earlier and I'm like maybe I need like the girlfriend's guide to autoimmune diseases, because that's the feedback that's been very beneficial and helpful for me. Is that? Well, I think it was the first beta reader. She's like, well, she gave me her feedback, but she's like I really wish that this book would be for Hashimoto's, or maybe you just make a general one to everyone else, because I feel like a lot of these ideas would fit with them and I think that's a lovely compliment. My brain does not have the bandwidth to write a whole new book right now, but I'll put it in maybe 2025.

Speaker 1: 32:23

There you go, and it can always be. You know, the girlfriend's guide to auto inflammatory, autoimmune conditions or something I don't know. That sounds wordy, horrible, but I'm sure there's something out there. We'll figure it out.

Speaker 2: 32:35

Yeah, you know I don't know if you've talked to anyone who've written books it took a lot. There was a lot of crying on my behalf. There was a lot of isolation. I felt like I was shoved in like intentionally. I chose to be in a cave for like 15 months of just writing. I would. I was also really. This was really bad then. So I would have points where I couldn't even see the screen and I would just continue on because I must have some weird neurotic and satiable drive to just finished. So I am grateful what was done, but I just never understood how much perseverance is needed and how little money is made from a book. But that's just the truth.

Speaker 1: 33:16

Now, you all know, absolutely, because you know it's not all sunshine and rainbows and it's not as easy as they make a scene on a movie.

Speaker 2: 33:24

You know life is not a homework movie. No, neither is a marriage, neither is raising children, you know, neither is life. Life is messy and life is complicated and it's hard and I really feel that it's supposed to be like that, because it forces us out of our comfy zone and it forces us to change and grow and stretch.

Speaker 1: 33:43

Absolutely Okay. So, looking back, what do you wish you'd known at the very beginning of your health journey?

Speaker 2: 33:53

Oh, what a good question. What do I wish I had known? There was so much out there that I wish I knew. I think one thing I wish I knew is that part of your health is gone. That's a fact. Lupus, or whatever else, has robbed you of it. It's stolen it in the middle of the night, but that doesn't mean that you're left with nothing. I wish I'd known that. You know the health still remains in my hands, part of it, and that is very, very impactful, because the healthier you can be, the more manageable your disease is, and so that's a big mind shift that I had gone through, and when I figured it out, that's really what allowed me to write the book, like, oh my gosh, I've got some things in here. I have to share this with women, like right away.

Speaker 1: 34:42

Absolutely, and I'm so glad you did.

Speaker 2: 34:45

Thank you.

Speaker 1: 34:47

Okay, finally, what message or takeaway do you hope readers will carry with them after reading your book on Lupus?

Speaker 2: 34:56

Well, the first one is, of course, we want to. You know, I want women to know that they have control of their health, they have control of what they do on a daily basis. But then I also want them to know that they are not their Lupus, because I can relate to that. When I was first diagnosed, I was like I'm Lupus, I'm Lupus, you know, everything was Lupus. I would get angry when, like something would happen. I'd be like I have Lupus. Can't you just leave me alone? It was just an identity that was like right here, like this big badge on my face, a big tattoo or something.

Speaker 2: 35:28

And eventually I learned that I didn't want it attached to me, that I didn't want to be known for Lupus. I didn't want to, you know, say Lupus all the other time. I didn't want it to be things. So I began to understand that I was a lot more. I began to prioritize that I was just me, trying the best to be me. The root of me is really love and kindness, and it wasn't what hair I had left or what hair I had. It wasn't my role of a mom or a wife or an author or anything like that. It was all of these roles, just kind of line up behind me, but first and foremost, and as I am me and have to be happy with how I choose to live my life, because I'm the one responsible for it, even though that jerk Lupus you know came into play.

Speaker 1: 36:14

Yes, you are not your diagnosis, you are not Lupus and you are more than all the side effects and symptoms and flares. You, at the end of the day, are Amanda Freakin. Che, that's right.

Speaker 2: 36:27

That's right. Yeah, it has to make sense. I mean, this is where I've been doing a lot of like self work. The counseling work is just to be like. You know, it's not what I achieve, it's not how many books I sell. It's my ability to be happy and satisfied with what I've produced in this world, what I've given out there, and always that I have the best intentions to write a book that would help other women along that journey and I just have to kind of let it out and be like universe. There we go, do what you way, and that's hard, right. Certainly, when you spend so much of your time, it's hard to do just that, but it's what's needed.

Speaker 1: 37:06

Indeed. Well, thank you so much for coming and giving us your time. Is there anything we haven't covered about yourself, about this book that we have? I mean, what have we not discussed? Did we leave anything out?

Speaker 2: 37:21

The only thing I would say is that when I wrote the book, I was like women, I'm gone, find it out for you. I'm going to find out exactly what we should eat and then we're all going to eat. That way, I'm going to find out all of these secrets of lupus and I'm going to tell it to you. And, as you know from reading the book, I didn't reveal any big secrets, because the secrets aren't out there, hidden. Like you don't have to be paleo or gluten free or any of these things. I mean, you should not eat alpha sprouts, you should not eat mung bean sprouts.

Speaker 2: 37:47

But besides that, a lot of these things that we thought that might be these hidden gems on how to control our health, are no really hidden gems. They're just the small, consistent things that we do on a daily basis. It's not you running a marathon, it's you getting up every hour and walking around for a few minutes. It's you eating the food that you know you need to do. It's managing the stress that comes at you. All of these things are within our control and that's really what I wanted people to know in the end.

Speaker 1: 38:17

And you did it. You did it and I thank you so much for writing this book and, like I said, I don't have lupus, but I enjoyed it and I still think that I learned so much from it, and I think that is beneficial to me in its own way as well.

Speaker 2: 38:32

Yes, and for that that's very impactful. It makes my heart happy to hear that.

Speaker 1: 38:38

Well, I guess we've covered it all, haven't we? I feel like I could talk to you for hours and ask you a million questions, but you know, we'll just have to have you come back again.

Speaker 2: 38:47

That's right Anytime. I'm happy to give some insight just from my end.

Speaker 1: 38:52

All right. Well, everyone, thank you for joining us and be sure to check out, amanda, when is the best place to find you and contact you?

Speaker 2: 39:00

if they want to get in touch, you can buy the book on Amazon and you can go to the website Amanda Che, which is C-H-A-Y because you know that was available, so you can find me there and on Instagram I'm Amanda Amanda E Che.

Speaker 1: 39:13

All right, sounds wonderful, and I will make sure to have all this in the show notes for you all. And until next time, don't forget your spoon.