Dr. Amee's Vulnerability with Epilepsy and Advocacy

What happens when you combine the expertise of a trailblazing dentist with an unwavering commitment to mental health advocacy? Dr. Amee shares her powerful story of living with epilepsy since age eight and how it catalyzed her mission to challenge societal stigma and embrace vulnerability. Her journey from patient to advocate is a beacon of hope for those newly diagnosed, offering insights into balancing a thriving career and personal life while managing an invisible illness. Join us as we uncover the transformative power of sharing one’s story and the strength found in authenticity.

Navigating the complexities of parenting with a chronic illness presents its own unique challenges. In our heartfelt discussion, Dr. Amee reveals the emotional rollercoaster she experiences, from isolation and depression to building resilience and understanding within her family. She emphasizes the importance of community support and open communication with children, allowing them to be active participants in the journey without feeling like a burden. Through personal anecdotes, we explore the significance of age-appropriate transparency, ensuring that the next generation understands and embraces the intricacies of living with chronic conditions.

Embracing vulnerability and fostering a sense of shared humanity are at the heart of our conversation. We celebrate the courage it takes to show up authentically, even in the face of adversity. Through gratitude and support, we delve into the beauty of creating a network that encourages openness and empathy. By highlighting personal stories and the transformative journey from patient to educator, we hope to inspire listeners to find strength in their vulnerabilities and build supportive communities that celebrate genuine connections.

Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

Let's Get Started - Rare Patient Voice

Chapters

• 0:00 Navigating Epilepsy and Mental Health
• 10:41 Parenting With Chronic Illness and Compassion
• 21:05 Living With Chronic Conditions
• 33:54 Gratitude and Support in Vulnerability

Transcript

Jen: 0:08

Hello and welcome to my Spoonie Sisters. Today we are excited to introduce a genuinely inspiring guest, dr Ami. She's a trailblazer in the dental field and a fierce advocate for mental health awareness. Dr Ami navigates the complex world of managing a high balance work-life career situation while living with epilepsy, and she's here to share her unfiltered truths about the realities of invisible illnesses. Her story isn't just about survival. It's about thriving, changing the stigma and balancing motherhood, career and self-care, all while battling epilepsy. Let's dive into her journey and gain powerful insights from her experiences.

Andi: 0:52

Well, hello, it's so good to see you today.

Amee: 0:54

Thank you for having me, lady. This should be fun.

Andi: 0:57

Excited to be here, so Ami you've been very open about the impact of epilepsy on your mental health. Can you share what led you to become such a vocal advocate for mental health in the chronic illness community?

Amee: 1:12

Yeah, I went from zero to 100, literally about talking about it and advocating. And it was I'm a Scorpio and you tell me not to do something and I'm going to do it. So I've had this condition since I was eight. I am now 44, not that it matters, but that's many, many, many years of this being shoved under the rug. And as a south asian woman, I kind of went through and checked our check boxes, right, because there there is a stigma to that. I have a graduate degree, have two children, blah, blah, blah, blah. And the minute I started talking about it it was kind like what are people going to think if they know this? And I really stopped and I thought about it and I'm like what are people going to think if they know this? And what do I think? Because it was the first time that I really had to question it myself if that makes any sense.

Amee: 2:07

To accept your own invisible illness takes time and it's a process and I don't know if that was the same for you ladies or anyone out there listening. I went through a process myself and it was only until one. This forced me to, but two I was forced to. It was changing and it was more apparent and it was more affecting my day-to-day life and I couldn't show up in the way that I'd always been known to show up for my family, my friends, my patients, my kids and everyone, everything we do. And there was no point in lying about it.

Amee: 2:42

I'm like what example am I setting to everyone around me? Right, I was going to a scheduled five-day hospital stay. Now I could have said, hey, I'm going to Mexico, I'm going to have some margaritas on the beach, peace, see you in five days. But I wasn't going to do that. I was like you know what? We're going to start talking about this and we're going to tell people what really is going on. And, frankly, this is going to be beautiful because I'm going to get the support that I've needed maybe this entire time. I just didn't know. So that's where my journey started, and it was last year that I was electively hospitalized and we started talking about it right before it was going to happen, because I wasn't just going to disappear. I was like look, look at this.

Jen: 3:25

I think it's not just a Scorpio thing, although Scorpios are pretty YOLO. Okay, you guys are pretty. You're not the boss of me, but I think once we're tired, we're just tired, and it's 0 to 100 for all of us when we're tired. But Scorpios are definitely YOLO personality, so I love your fight.

Amee: 3:45

It's on the table and it's a blessing in disguise. You can look at it however you want to, but it is what it is and I'm going to take it for what comes.

Andi: 3:53

And I'm looking at you as an accomplished, stunning woman, thinking wow, you have nothing to be afraid of. You really don't? I mean, it's in our minds, and I don't know how in the world it gets in our minds that we have something to be afraid of.

Amee: 4:06

Yeah, I don't know how it ends up there either, because no one for me personally no one has told me that I think I've kind of self-absorbed that or created this self-narrative that wasn't spoken to me and I hope anyone else who's newly diagnosed or listening or is younger doesn't create that narrative and we can change that moving forward?

Andi: 4:29

Yes, because we are our worst critic and we are far harder on ourselves than anyone else will be Absolutely Now. Balancing a career as a dentist while managing epilepsy is no small feat. How have you found ways to maintain your professional life while fortunate with the state of the condition?

Amee: 4:47

and the situation, my support system and everyone around me, because I can't do this alone. I work with my husband and he is also a dentist, doesn't matter, but we're a team. The team I work with as well my auxiliary team, my extended team, is also very supportive, and they actually just found out last year too, and some of them have been working with me for over 10 to 15 years, and so being open about that was just kind of like weight lifted off your shoulder. It's like you feel like you have to carry all of this pressure to show up and to be a certain way and do and do and do in this hustle culture and the minute you just let it go and you're vulnerable and you're real with yourself. There's just something magical that happened. I just embraced it. It was like I can truly fully be who I am, every single being an aspect of me. You feel lighter. Yes, you do.

Amee: 5:45

You feel lighter and you're authentic, you know it's like there's nothing under this rug anymore, like here you go, I am just like you, patient one, just like you, patient two. We're all humans and to be able to take that pressure off of me and to be able to be vulnerable with everyone around me, it's really changed the way I look at things. I am more empathetic because of it, a little more open to the ideas of fluidity. I was very rigid in my ways because I couldn't be. It didn't affect me, and there was, I don't know. We're kind of type A and you flip that switch. When you can no longer be that way, there's beauty and you just let the mesh cap in, and that's how I've seen it.

Jen: 6:30

Yeah, there is a lot of beauty in the mess. We don't see it where we're right in it, but there's so much beauty in the mess I think we find a lot of our resilience and we are forced to sit in our strength, the strength that we didn't know we had because we were so busy doing and going and being and showing up that we were for others in the strong face that when we had to sit, still we realized that it wasn't just. I'm strong on the outside, I have to sit with me and I'm actually pretty dang strong. Let's navigate this. Yeah, I could just listen to you talk all day.

Jen: 7:06

I know, I could just listen to you talk all day.

Amee: 7:09

I've come a long ways and it's not an overnight process, trust me. It just doesn't happen that way. It's a good start. Look in the mirror and be like look this, this is the reality, and it's not always easy. I'm not going to paint the pretty picture anymore. Okay being easy, but it is what it is. We're gonna make a lemonade out of lemons.

Jen: 7:31

Yeah, Yep, the best class of lemonade.

Andi: 7:35

Right, that moment of looking in the mirror and finally saying, okay, I'm done, I'm sick of this, this is who I am, this is what my life is, this is what it's made me, and it's made me pretty amazing. How about I stop talking down to myself and I just share who I am? You've talked about how mental health and chronic illness are often intertwined. What are some of the key mental health challenges you've faced throughout your journey with epilepsy man?

Amee: 8:00

I know this can go deep. I was in hustle culture, right. I don't think you realize what's normal and what's not. When you're on the hamster wheel, when you're just go, go, go. You don't have that time to sit and even check in with yourself. Like what does that even mean when I was put on my butt and taking medications that made me feel not myself.

Amee: 8:24

It comes with a lot of feels, right, that aren't normal to me but are normal as part of the process, and I had to have gone through it. Depression, anxiety, loneliness, isolation. All of that and you may disagree with me, but I think you will agree with me is universal. We can call it epilepsy, but whether it's any chronic, invisible illness, it's the same. The feelings are the same and for me the process was less about the condition but more about everything else, was harder to accept. Everything else came with it, and just talking about it made that a little bit easier and that took the weight off of that. So I was able to deal with those feelings and really look at them straight in the eye and work through those, and that allowed me. Talking about it was one way that allowed me to move forward.

Andi: 9:15

Did you come to this decision all on your own or were you in any kind of counseling?

Amee: 9:21

Yeah, I have a coach that I was working with, who I'm still working with, and we're going through the process. I'm going to get my coaching certification, because that's how I passionately and deeply feel this is a problem. I've had the support of that along the way, the encouragement along the way. It's been beautiful.

Andi: 9:40

I'm excited for you. Yeah, let's see.

Amee: 9:42

I'm still going to be doing what I do in the capacity I can do it and this is just kind of a passion project on the side that I feel like is calling me. I've been talking about it for years. I love it. Now is the time.

Andi: 10:01

I think there's a point that we all get to eventually, where we have to finally come to the realization that in our own way, we are the leader, we are the professional in our illness. We stand up and Andy's talking to me about this a lot lately but we have to stand up and finally say this is who I am, this is the skill set and what I have to offer, and there's people out there that need that support. So that's exciting that you're working on that, because I think there's someone out there that needs to hear you. Yeah.

Amee: 10:26

And you know, I just hope it's helping someone, whether it's coming and seeking support. Just know that there's support out there, yeah support is huge.

Jen: 10:35

I wish I had community, the community I have now early in my diagnosis journey. When you said isolation and depression and anxiety, that ain't real and it is universal. It doesn't matter what the condition is, and it is it ebbs and flows, and I have moments where I think that I am great and I am super bubbly, and then I have a flare, and it is it ebbs and flows, and I have moments where I think that I am great and I am super bubbly, and then I have a flare and it could get dark and it is very much so universal. But that really resonated. Thank you for sharing that.

Andi: 11:03

I think it resonates with a lot of people absolutely we all go through that loneliness and that pain and the heartache that comes with it. Yeah, many listeners are mothers living with invisible illnesses. Can you share some of the hardest lessons you've learned as a mom and how you've managed to balance parenting with your health as well?

Amee: 11:24

Yeah, for a chronic people pleaser. I want to do it all. I can live life by myself, yay, rob. Um, yeah, threw that out the window real quick and it was the best thing I could have done.

Amee: 11:38

Kids are meant to be raised by tribes. It takes a village and that quote saying we've all heard it, it's not, you know, it's there for a reason. It takes a village. And when you reach out to them and you can just authentically tell them you know one, you don't have to explain yourself why you need them. That's a whole different conversation. But when you take the courage myself and put my guard down a little bit and reach out and say, hey, can I get support into this? When you ask for help, it's there For me. That was my ace.

Amee: 12:09

I just had to go out of control and say Look, you've got to be down to the bottom to build yourself back up. My husband's amazing and has done and still does a lot of our dynamics. They're definitely not 50-50. And some days it's zero hundred. That's okay. We're all given a hundred if today feels like 50. And with kids they learn resilience. Through this I've kind of taken my shift on how I don't have to be a quote unquote perfect parent it's okay if I can't make a basketball game today. He's going to have 50 others that I will be at and when I can, taking the stress off myself. I think has been the best thing that I could have done for me. And, like I said, they're resilient and they understand and my kids are at the age where they understand and there's someone else there. You know we've got our tribe there. They're not alone, they're being driven there by somebody else. But today Mama's not making it and Mama's accepted that.

Jen: 13:10

Now yeah, there's so much calm in the acceptance portion of I, just I am there, but I can't't. I remember the first time I allowed myself to tell my daughter I want to be there physically but mama does not have the energy, and to hear her she took a deep breath and she held my hand and she said it's okay, I'll call you before the start. And we got to video chat. We got to do the thing that was my. I get my coming out moment of. I can't keep doing this, like my body's not gonna let me. Like, mommy, we can, I'll call you and we can do our prayers before the start and I'll call you after the race. And it was great. And you're right, it does take a village. It is a community.

Jen: 13:48

Because other parents were sending. They're like, they asked what's your mom's phone number? They were sending me pictures of her along the race and then it became I just had to reach out, hey. They would be like hey, mama, are you going to make it to this meet? I can't, I don't feel 100%. Don't worry, we got you, we'll send you pictures, but that community is everything, the village is everything, and just being able to go, I can't, I can't and see their face and know that they accept it. I think we put it on ourselves to go. They're not going to understand or maybe they'll be disappointed and really sometimes all they want to do is be included in on the decision of. I know you don't feel good. They just want us to stop lying. I know you don't feel good, but you're going to try to do this anyway, you know.

Amee: 14:30

Yeah, it's, it's hard. I mean, I can't say. I don't have those moments where I'll wonder if you know, are they not telling me about being somewhere because they don't want to be a burden? Are there you?

Amee: 14:42

know, there's a, it can go deeper than just being at you know the scheduled activities. I can do that sometimes and I do. I think that's part of the process of gosh. Would she want to be there? Would he want to be there? And they're just not asking me because they don't want to feel like it would be too much, because they already know what I'm doing or I'll never know those answers, right, as a mom, I'll never know that. But just being able to have those open discussions and having that tribe that they could also go to, I'm hoping, is all we should do.

Andi: 15:17

Yeah, absolutely, and I think we do our best with deciding when our kids are ready to hear what they need to hear. You know, there's probably a time in their life, an age in their life, that they're ready to know all the dirty ugly of what's going on. But it might not be when they're five years old and maybe they know mommy has something going on. You know when they're five years old, but maybe when they're five years old and maybe they know mommy. Mommy has something going on. You know when they're five years old, but maybe when they're 15 they get to hear more of the details, just to decide what's appropriate and when and how to deal with it. But I think it makes our kids better people.

Andi: 16:12

They are more compassionate definitely more compassionate I say that about myself all the time. I tell people I will never take my illnesses away, and I know that sounds crazy, but it's because it's made me who I am today and it's made me more compassionate. And I look at what it's done for my children and it's made them more compassionate. So as much as these hard things just suck, there's beauty in it.

Amee: 16:36

It sucks and I think it really takes time to find the beauty in it. And that does come. It's not easy and you just make the most of it.

Andi: 16:47

What is your epilepsy like? Is it pretty well controlled? Is it something that you feel you hardly notice, or what does that look like?

Amee: 16:55

This is again something I'm very grateful for. It is not your typical presentation. Now I could ask you, but I don't want to put anyone on the spot. But what I typically knew before was you know you hear someone having a seizure? It's a tonic-clonic unconscious things like that.

Amee: 17:11

And you kind of go through. There's a protocol for that. Minding fortunately does not present that way and I don't lose consciousness. I know it's happening in its only motor. With medications it's only motor.

Amee: 17:22

You know, I just kind of feel tingling in my right hand Now, just sensing that you just kind of know your limitations. You're like, okay, I'm starting to feel it. It's just it signs for my body that hey, today we're going to bed and tomorrow we're not going to commit to this, this and this. Fortunately and unfortunately, it's really changed my lifestyle in the last year. Just tuning into that, and it seems like she has it great and I got told this and you guys probably hear this all the time oh, you look great and I'm just like, yeah, I do. Thanks, you can't explain what you feel and what you're going through. I'm fortunate I can tell when it's going to be coming on and keep myself my schedule, change my schedule around it, work for myself, plan for you know people to take my kids places they need to be and plan weekends off and days off accordingly.

Andi: 18:13

Does it affect your entire day, or are there times where maybe it only bothers you for an hour?

Amee: 18:19

Yeah, no, it usually. If it flares, it's usually like 30 minutes to an hour. When I'm having a flare up, it's been consistent on the time of day. So, like today, I've just been, I'm going to get everything I need to do in the morning productive and then I'm going to allow the evening to progress how it progresses. No plans, but again, I'm not. I don't have that free state of mind like I used to be, like meet my girlfriends whenever I want to at 7 pm and go have cocktails whenever I want to like. That freedom has been taken away and that's also been another part of it. That has, to me, been a grieving process that's real, real, that's real.

Jen: 18:58

I don't know that isn't real.

Amee: 19:07

When I could just wake up and make decisions that only affected three people and I could do what I wanted to essentially. And then I have to do a self-check-in and be like, no, this isn't going to work for you. Today it still kind of hurts, I still get FOMO and I want to be places, but I know I'm making the best decision and I have to be looking out for myself because nobody else is going to know when that needs to happen besides me?

Andi: 19:25

Yeah, you advocate for removing the stigma around epilepsy and talking about it openly. What conversations do you think need to happen to create more understanding around this condition?

Amee: 19:39

So epilepsy is an umbrella term. I talked about this a little bit before in some other podcasts, but there's so many different presentations. If you don't say the umbrella term to somebody, you don't leave room for a conversation, and just talking about it is what starts a conversation. To get somebody to know what it looks like for you. I think knowing what someone is going through helps you support it. And questions just like how can I support you? What do you need? Those open-ended questions leave space for each individual to express their difficulties and challenges and even positives that they've come from the experience. Because it's so individual it's one term but it's so individualized.

Andi: 20:23

When we're growing up we always think of. There's one way that epilepsy looks, and it is far from it. There's been times in our lives where we're looking at someone, talking to someone, and we don't even realize they're having a seizure all the time. What kind of advice would you give to others in jobs who are trying to balance their work life with their illness and their family?

Amee: 20:44

Yeah, that's where creating a support system is essential, and you can't do that until you talk about it, right? I kind of flipped that. I did it backwards. I had an amazing support system and then I was able to tap into it. But having that has been key for me being able to do what I've been able to do for the last year, which is really just a lot of self-care.

Amee: 21:05

When it comes to jobs, I would say be open and honest about your condition, because what I've learned, whether it's a job or a friend or a family, if they're not willing to accept you and fully you, then that's not the place you need to be. And there are many, many places that will accept you for all of you, all the parts of you. There's no reason to, and the people around you need to be aware so they can best support you. It's not even about hiding it, it's about gosh. You've just created a support system, like, how beautiful is that? And you don't have to lie about why you can't come in today or whatever the reason may be. It's understood and there's empathy and you've created space and you've allowed yourself to accept that.

Andi: 21:47

What would be great for people to realize is that when we're keeping this big secret that we think we have to hide, once we finally open up and we bring it up to the circle we're in, how many other people start chiming in with what they're dealing with too, and now they feel less alone. All because we were brave and we finally talked about it. Yeah, absolutely.

Amee: 22:08

And so many people reach out. I mean people I've known since high school and that was a long time ago for me and I've known for 15, 20 years, gone on trips with every single year, who had no idea I mean people closest to me had no idea for them to show up and say what do you need? How can you be here and tell me more? And that's it. And when someone asks you those questions, it's just like that weight. Let me tell you and yes, this is what I'm asking and it's okay to ask for that support and that help in the way you need it at the time and by being brave, speaking up and telling everyone what you're going through.

Andi: 22:43

now that they know you have people come out of the woodwork. Oh well, I just got diagnosed with this. Or, oh, my child's dealing with it. Or I have a friend that's really struggling. Can she talk to you? It's a beautiful thing.

Amee: 22:55

That's been the most rewarding part of this. Honestly, that's been the most rewarding part of this, like, honestly, this journey was the least about me. It was what I could create and open up space for other people to also feel seen and heard in a place that I never felt like I could.

Jen: 23:10

That's beautiful. My eye is sweating. So yeah, Thank you for opening space.

Amee: 23:16

Thank you for that.

Andi: 23:17

It's been such a joy to listen to you, and we still have more to go. Mental's been such a joy to listen to you, and we still have more to go.

Jen: 23:21

Mental health advocacy is a big part of your mission. How do you suggest others living with chronic conditions start advocating for their own mental health like you did.

Amee: 23:30

You can go down and search Dr Dougal all day long, all day. We all know we've all been to Dr Dougal. But the most important resource and support system is going to be, one, finding the right provider and two, talking about it, to finding other people that have lived and are currently living. What you are, and when you are able to come to terms with it and speak of it, is when you allow space for everybody else to come in who didn't know anything about the condition. Right now, you're the educator, right? You've done this deep dive, you're living it, you know what you're going through and now you become from patient to victim to educator, and there's something so empowering about that process and that's just from talking about it.

Amee: 24:13

And I can't emphasize enough even epilepsy. I've learned so much about other types of epilepsy. Yes, I've had this for so long. I only knew my way. It was like okay, this is what it is for me. Yes, I knew a little bit that there were other ways that it presented and whatnot, but I've really got to learn and I became interested in people and their stories and when you become interested in people, it just automatically comes back and forth and the energy that you receive and that gets thrown has no value.

Andi: 24:48

It's been interesting learning about epilepsy over the years. We had a little girl come over to a sleepover at our house and she was like I don't think my mom packed my medicine You've just seen how big my eyes got Medicine, what medicine? Your mom didn't tell me. And she's like oh yeah, I have epilepsy. My husband and I looked at each other and I'm like were we supposed to know this? Are we supposed to be prepared? Why didn't she tell us?

Andi: 25:11

It was a girl that I knew her parents very well. Our daughters did soccer together and I kind of had a meltdown. I called my friend and she said soccer together. And I kind of had a meltdown. I called my friend and she said oh yeah, it's fine, she had a dose before she left, she's fine, I'll have her in the morning. And I had all kinds of questions. That was the first time it came into my life and it was a few years later. My niece was born in 2009 and she was born terminally ill with a condition called Tay-Sachs disease, and it takes away their vision, it takes away their hearing, they have seizures and ultimately, in 2012, my niece passed away in the middle of a seizure and most of her seizures. You didn't even know she was having them, unless you were family and you knew what it looked like. It's been interesting learning more and more about it from so many people and what it looks like for different people. Interesting learning more and more about it from so many people and what it looks like for different people.

Jen: 26:02

Yeah, my high school best friend we're still best friends to this day. She had been having seizures all through high school, didn't know, and in her adult life she found out that she didn't have a corpus callosum. That is what. What is it called? She has ACC and that was what was causing her seizures, but she gets like super hot. If they're focal she'll just stare, she'll get super hot.

Jen: 26:29

But it wasn't until she was in her feast where she found out that she had been having seizures and that she was missing her corpus callosum. I was like the fact that you're doing anything with coordination, wow, that's a different seizure. I didn't know that it was so many different variations that they could present, and I'm a nurse Like we're not taught all of the different ways you can see it, but we are taught that the three major that may look like this, it may look like this, but not the other ones. I'm glad we're having this conversation because even as a medical professional, I don't know all of the ways that it can manifest or present itself and even with a best friend and we've been best friends for 30 years had no idea that that was what she was going through till about six years ago.

Amee: 27:16

Yeah, yeah, just opening up about it. There's something and not everyone's going to get there at the same time and the same point. Everyone's journey is going to battles, depending on what's going on. What are some ways?

Andi: 27:48

you stay mentally and emotionally resilient through these challenges.

Amee: 27:52

Today's just one day. I live my life by a lot of positive affirmations and today's a day and tomorrow's another. I don't look at long-term necessarily and I go assess the morning and say these are my goals for the day, Give myself some grace if it happens, and tomorrow's another day if it doesn't. And there's a few things I prioritize and everything else is extra. I love my girlfriends, but with the age my kids are and work and running my own business and owning my own business, that's third tier, right, Like my patients, my work, my kids, my husband, my marital relationship and then my you know, my friends, because that feeds my soul.

Amee: 28:32

So it actually has been beautiful in the sense that you remove all of the negativity and all of those spaces that were not serving you because you have no time and energy for them. And this year is what I've done. I mean, I quit drinking, which isn't the point, but those places in those environments no longer served me. I would never have known that had I not gone through this process. I would have just been doing the same thing because that's all I knew. It wouldn't have allowed me time to be like you know what, Maybe I didn't really enjoy that as much as I thought I did. How does this?

Andi: 29:08

work. Is this something that is genetic? Is this something that can be passed down to your children? Is it something you need to watch out for, or is it purely who knows how?

Amee: 29:17

Don't we love the term idiopathic? It's not genetic. There's no known cause. In my case, again, it's situational and it's case-based. It can be trauma-induced, it can be genetics. It's associated as a symptom of many, many diseases. My case is idiopathic, just lucky one in 26, which is the commonality. One in 26 people have epilepsy and there is no cure for the time being, and so we're all just managing as best we know. How.

Amee: 29:46

Is there anything you have to be careful about? There are a few things that I know my triggers are, and so I'm very cognizant of keeping those in track. One of them is sleep. I'm on a really strict sleep schedule now. Like girlfriends wouldn't go out at 9pm, nope, not happening. Does someone want to meet at six? I'm there, I'll be home by nine. So, like, structure is really important. Sleep is a big one for me, and hormones, I think, are another one which we just, you know, obviously can't do much about. So it's different for everyone. But the triggers once you kind of identify those, if you can identify those, then that does help with management.

Andi: 30:20

Does your husband notice when you need some sleep or when you need a break? Is this something that he comes up to you and he's like honey? I'm noticing something.

Amee: 30:35

He doesn't have to come up to me, it's just like an unspoken. He just knows and just comes right in and it'll be seven. I'll be like I'm up for the night. There's no other conversation that needs to happen. He's got the rest taken care of. That's really good. There's no. It's beautiful. I'm very fortunate to have that.

Andi: 30:48

How do you define thriving with an invisible illness and what does it look like for you?

Amee: 30:53

now. Thriving means making the best of every situation that you're given and no one chooses. You know, no one's playing roulette and choosing a chronic illness and saying this is the one I want. For me, thriving is being able to do the things I'm able to do every single day, and that's thriving for me absolutely what is one message you want to leave with our listeners who may be battling chronic conditions, whether they're visible or invisible?

Amee: 31:24

Don't let anybody tell you you can't. You define what you can and cannot do, and only you know your condition and your limitations, because I don't think I would have done what I did if, as a child, someone told me I couldn't because of an illness.

Jen: 31:40

What is your 2025 word? Adaptability, adaptability.

Amee: 31:45

Yeah, that's a great question, because I don't do New Year's resolutions. That is my word every single day is I love it, jenny? What's yours?

Jen: 31:53

Adventures. Mine was fearless, fearless and vocal, so this podcast thing is out of the box for me because I'm a very hey kind of person yeah, so proud of you.

Amee: 32:05

For you, I was just gonna say the same I'm so proud of you yeah, this is.

Jen: 32:08

This is new this is great.

Andi: 32:10

Andy and I about four years ago, and I was that crazy white girl that wouldn't leave her alone yeah, wanted to send me happy mail and look at at us.

Jen: 32:19

Now I got stickers and stuff, just yeah.

Andi: 32:22

That's funny. You hear her say this story to people all the time and it's true.

Jen: 32:26

She randomly asked me what's your address and I'm like huh, whatever. And then I get this envelope and I'm retired military. So you start getting random envelopes from people you've never met. I said well. I was like, well, what is this? Well, you know, this really nice white lady that I met on the internet sent me happy mail and it was it was the sweetest card ever and it came like right on time. So you guys aren't getting happy mail from Gracefully Jen I don't know who are you even, and why not? Because they're tearjerkers right on time every time.

Jen: 32:58

That's beautiful.

Andi: 32:59

I could say the same about you and many others too, though you guys for me as well. Well, this has been a fantastic chat, amy. It's been wonderful to have you on here. Undoubtedly, I think our listeners are going to resonate so much with all the incredible information you've shared. How is the best way for someone to get in touch with you if they want to follow you or get to know you more?

Amee: 33:22

Right now I'm just on Instagram. That's the only place I'm hiding behind the Bindi's and there's kind of a significance to that. If quickly, I'll go through it. But the Bindi is the third eye, or the dot worn by Indian women, and this was kind of you know what. We're gonna take that off and we're gonna talk about what's's real, because that's just where we're at now. So that's my handle. It might not make a lot of sense if you know from a different culture or origin, but I'm on Instagram only at the current time and working on getting some other certifications and working on myself for the time being. But reach out to me for any type of support night day message, don't hesitate.

Jen: 33:59

Thank you for an amazing conversation, thank you for your vulnerability, thank you for your fight, just thank you. Thank you for being authentically you. There's a glow to you. So thank you for just showing up in the capacity you have, on the days that you have extra capacity or not, but thank you for being authentically you and spending some time with us. Thank you for having me.

Andi: 34:20

I appreciate it, ladies, so listeners until next.