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32 Years Without a Diagnosis | Amy Rivera's Lymphedema Journey | Healing By Design EP 1
20 Plays15 days ago
What happens when a patient spends more than three decades searching for answers?
In the premiere episode of Healing By Design, hosts Jennifer Bierhup and Therese Laub sit down with patient advocate Amy Rivera to discuss her extraordinary journey living with primary lymphedema. After 32 years of misdiagnoses, unanswered questions, and navigating a fragmented healthcare system, Amy finally received the diagnosis that changed everything.
Amy shares the realities of living with a chronic condition, the emotional toll of not being believed, and how her personal experience led her to become a nationally recognized advocate for individuals living with lymphedema and other chronic conditions.
Together, they explore the importance of patient voice, self-advocacy, care coordination, and why healthcare outcomes often depend on what happens between providers, care settings, and transitions throughout the continuum of care.
This conversation is a powerful reminder that healing is about more than treatment. It is about understanding, collaboration, and ensuring that no patient falls through the cracks.
In this episode:
• Amy's 32-year journey to diagnosis
• Living with primary lymphedema
• The impact of delayed and missed diagnoses
• Patient advocacy and empowerment
• Navigating complex healthcare systems
• The importance of care coordination and communication
• Finding purpose through lived experience
Healing By Design is a podcast powered by PAWSIC that explores the people, processes, and perspectives shaping better outcomes across the continuum of care.
Transcript
Introduction & Purpose of the Podcast
00:00:00
Speaker
Hello everyone! Welcome to Healing by Design, the podcast where we amplify the voices that matter most in wound care. I'm Jen Bierup and I am here with my co-host Therese Laub. We are so glad you found us and we can't wait to dig into today's conversation.
00:00:13
Speaker
Before we jump in, I do want to take just a quick moment to cover a few things. Everything we talk about on this podcast is meant to educate and inform. It's not medical advice and it shouldn't be taken as a diagnosis or treatment recommendations. Your situation is unique and your health care provider is always your best resource for decisions about your care. The opinions our guests share are their own.
00:00:34
Speaker
They don't speak for POSIC or our sponsors. And if any of our guests have professional or financial ties to products or companies we discuss, we'll always be upfront about that. One more thing, if you're ever dealing with a wound care emergency, please don't look to us for that. Go to a provider right away.
00:00:49
Speaker
Now that we have all of the disclaimers out of the way, let's dive right into our show. Welcome to Healing by Design, powered by POSIC, the Post-Acute Skin and Wound Integrity Council.
Hosts' Backgrounds & Motivation
00:01:02
Speaker
This is our very first podcast, and we are so excited that you are joining us today. With us, I have Therese Laub. Hello. Hello. And behind the scenes, what you can't see is we have Max Bierhup, who is our producer and director of our podcast. Everything that you see and hear is brought to you by Max. Hello.
00:01:23
Speaker
Hey guys, how's it going? I would like to introduce a little bit about myself and then we'll absolutely want to hear about Therese. Um, I've been in wound care for, uh, 20, almost 20 years. I've worked in, Almost every post-acute space except for long-term care, that I can say. um i have built education. Terezin, I have built companies together.
00:01:46
Speaker
And it has just been the adventure of a lifetime. But underneath it all, we do this because our why is the patience. um We've helped patients across the way, so many different environments, and it is truly exactly why we are here. It's why we exist.
00:02:07
Speaker
It's what we do. We teach other nurses. We teach other providers. um We empower them to be able to empower their patients. The more we educate, the more we get the word out there, the bigger the wound care healing army grows.
00:02:27
Speaker
And that is exactly what what we do. And
Amy Rivera's Advocacy Journey
00:02:30
Speaker
so it's so exciting that Plossett gave us this opportunity to grow it even bigger by hosting a podcast.
00:02:38
Speaker
Yes, Jen, this is a very exciting time. um As Jen said, my name is Therese. I have a few more years on Jen with Wound Care. Just a couple But all of my career has been in post-acute care, just like you, Jen. um I have worked long-term care for a little while, um and it has been very empowering working in all the different spaces. I did a lot in industry of as well, which gives a unique perspective on wound care from another another side of it, right? And I am just so thankful that we have this opportunity because i think anybody that's listening knows that wound care is going under a lot of change. And we are seeing a lot when it comes to the science of wound care products that are out there with AI in the mix. That's even like incredible watching that go down. um
00:03:28
Speaker
The regulatory, uh, that that that they're doing with Medicare and all that, every everything is just changing. So it's going to be interesting in this series to talk with a lot of different people in this space to see where they're at, what their perspectives are, and what we're doing to bring it all together, as you said, to help the patients, because this is really why we're all here. So it's been ah an exciting journey so far, and this is this is just another piece that's going to make it even more fun. I know. And if you have ever spent any time with Therese and I, you know that we really like to have a good time yeah for certain. So this is going to be exciting on multiple levels. I can say that. So Therese, thank you so much. I'm so excited that we're together doing this. I'm excited that we're with Max. And so whether you're here because you're frustrated, you're curious, you're passionate, you're skeptical, you have a lot of questions, shins you just are really curious about what Therese and Jen might say, we're happy that you're joining us. You're in the right place. And I hope at the end of all the podcasts, you come away saying, wow, I learned something. I was moved. I'm going to go change my practice today.
00:04:44
Speaker
So with further ado... Let's get started. Let's get started. Our guest has lived with primary lymphedema since birth. For over 30 years, she was misdiagnosed, dismissed, and told there was nothing that could be done.
00:04:58
Speaker
She endured bullying, physical pain, and a health healthcare care system that didn't have any answers. And instead of giving up, she became the answer. She's a patient advocate, a published author, a nonprofit founder, a natural bodybuilder, and the creator of the Rivera Method, a comprehensive patient-centered approach to lymphedema self-management that is changing lives around the world.
00:05:23
Speaker
She's known in the lymphedema community simply as the ninja. Please
Challenges & Misdiagnoses in Amy's Story
00:05:28
Speaker
welcome our very first guest on Healing by Design, Amy Rivera. Thank you Thank you for having me. And yeah, I'm the the ninja. yeah This is so, we're excited. Show us some movies.
00:05:42
Speaker
I don't know if that'd be appropriate right now. I might hurt myself. I'm stretched this morning. Oh my goodness. Well, we are so excited to have you. yeah One of the main goals of of our podcast, especially in the beginning, is really to talk about the patient voice. um We know in wound care, um we talk so much about dressings, about different modalities, about compression, elevation. We talk about diet. But what we forget is that behind all of that is a person.
00:06:12
Speaker
And so we are so excited to have you as our first guest to really brit be that person behind all of those things that we talk about every day in wound care. So with that, if you don't mind, tell us a little bit about yourself and about your about your journey.
00:06:30
Speaker
Sure. So i was born with primary lymphedema and it was onset at birth. My mother told me um the right side of my body was twice the size of my left.
00:06:40
Speaker
she said i looked like two different children. And so my mother was very young and she already had like the new mommy jitters, you know, like what's this cry i mean? How do I hold my baby? You know, and then you add this onto it. So I can imagine the amount of stress that she was going through. But what was even crazier to me is when she told me that the doctors told her it was the way she carried me in the room. Wow, no kidding.
00:07:09
Speaker
Yes. And as I continue to share this story over the years, so many other people who with lymphedema, primary lymphedema, I should say, their parents were told the exact same thing. You're serious. It blew me away. It blew me away. So the doctor said, that after a couple of days, the swelling would go down and I should be okay. Which it did actually, for the most part of the right side of the body, except for my right leg.
00:07:35
Speaker
And as I continued to grow, my right leg grew and my poor parents took me to all the specialists here in St. Louis, took me to every doctor they could think of. And there was never anything mentioned about lymphedema, lymphatic diseases. it was just weird swelling. That's all they were told.
00:07:57
Speaker
Yeah. And so as I continued to grow, They just kind of gave up, you know, they didn't know what else to do. so for 32 years, i had zero answer my gosh.
00:08:10
Speaker
Your poor parents, could you imagine that feeling of guilt? You know, like what am I doing wrong or what did I do? but Yeah, yeah. And when I talk to my mom about this now, because I really want to interview her, is she's she'll get me canceled and viral at all at the same time because she's got some things she wants to say. And I'm like, mom, you can't say that. You can't talk me up on 50 times and you can't MF them and this and that. She's got a lot to say.
00:08:38
Speaker
So all that anger is, you know, pinned up here. And I'm like, rightfully so, though. I understand your frustration, which is why I do what I do today. Not just for me, but for my parents and for everyone else out there who's dealing with the same type of situation that I've dealt with or currently dealing with. So, yeah, my right leg grew to be 200% larger than my left leg. Oh, my goodness.
00:09:03
Speaker
It was like at elephant titus stage. And I remember going to my primary care, which I've had for years. And I was 31 at the time. And I'm like, I need to do something.
00:09:15
Speaker
My leg is getting worse. I'm drinking bottles of wine, wearing long dresses and skirts to hide it. And all I'm doing is making my condition, which I didn't know at the time.
00:09:26
Speaker
was a condition worse. So he literally had his, his pad and his paper. wouldn't even look at me. And he just goes, it's just going to be weird swelling. Here's a diuretic. And you're going to be in a wheelchair about 35. This is your quality of life. There's nothing. at that i was like, okay, you're fired. Yeah. Here's your, here's your diuretic that we're going to pull from one leg specifically.
00:09:53
Speaker
Cause that's how that works. Because that's exactly how that works. That's a whole nother conversation, right? Like whole nother episode. So I fired him and I was so mad. i went back to work and I just started Googling the things that I was called in school. Elephant leg, big leg, you know, just just things I was called because I'm like, I cannot be the only one in the world. yeah There's just no way.
00:10:20
Speaker
And then I was shocked to see these legs look like mine, but the catch was they weren't in the US. They were in different countries. And I'm like,
00:10:32
Speaker
Wait a minute. So I called my mom. i'm like, did you travel out the country and eat something that had a parasite in it? I was trying to like put it together. she was like, Amy, the only fish I eat is fish sticks, which, by the way, is not fish. But, you know, she was just like making a point. like She did not travel out of the country. And so...
00:10:51
Speaker
like well, how do I look like these people? And I've never even been out in the U.S. at this point. And you've never been out the U.S., but my leg looks exactly like this elephantitis that come from a parasite.
00:11:05
Speaker
So then I found a doctor in France, Dr. Becker. like This was before Zoom was really cool and everything. So I was trying to figure all that out, trying to figure out the Zoom and my settings. And that was a whole fiasco. But eventually I got on with her and she was like,
00:11:21
Speaker
Looks like lymphedema. I'm like, lympho what? but What? And she's like you can come to France and see me, but this is what I would do. and And it was a very conservative type of treatment. I'm like, you see my leg? I don't have time for conservative treatment. Right. it's You know? Right. Like, it's already bad. It's been 30 years. Can we do something more aggressive? Yeah. yeah right Right. I've been conservative for 30 years.
00:11:45
Speaker
So I found a doctor in Chicago that she referred me to and I could not believe there was a physician four and a half hours away from me this entire time.
00:11:58
Speaker
Yeah, I was pretty um upset, but excited at the same time because I'm like, finally, I'm getting some answers. So I went to Chicago and I remember feeling so nervous. My hands were sweaty. My armpits were definitely sweaty and I wasn't even peri-hidopausal. So I was just like a hot mess, but I had never showed anyone my leg other than like my primary care. i barely showed my family because I was like so embarrassed.
00:12:30
Speaker
So I'm standing there, my legs all out and I'm just like shaking oh and man, it was really nerve wracking for me. And then she says, you have primary lymphedema. I said, there's that L word again. What is this?
00:12:45
Speaker
And she explains to me what the lymphatic system does, what lymphedema is and how there's no cure and it progressively gets worse. I'm like, how much worse can I get? right yeah Was I afraid to ask that? Yes. But I'm like, I got to know what I'm dealing with at this point.
00:13:05
Speaker
And When she said no cure, was like, dang, I just won the lottery because you just told me what it is. And now just took my winnings away. There
Diagnosis & Treatment Exploration
00:13:16
Speaker
goes playing the lottery that just blew my hope forever, you know? So, so she said, well, there's these surgeries and this and that. And at the time I knew it was really truly experimental back in 2013. Yeah. But I was so desperate for some like pain relief that I went ahead and had a surgery with her. And she took lymph nodes from my neck and she put them in the, in the, connected like the groin area where I was missing cluster of lymph nodes.
00:13:46
Speaker
which by the way, I had the worst test ever, the lymphocytography. And at that time they weren't numbing you or anything. No. I want to take a moment to tell you about something I'm really proud of, and that is libellin learning. For years, wound care case management has existed in this space where clinical expertise meets care coordination. And yet there has never been a dedicated educational home for the professionals doing this work every day. Nobody was building for the wound care case manager specifically, so we did.
00:14:16
Speaker
Lebellin Learning was founded to fill that gap. We are pioneers in developing education designed specifically for wound care case managers. The nurses, the coordinators, the clinicians navigating complex patients across every care setting.
00:14:30
Speaker
The ones who are often doing everything right, but without the resources and recognition they deserve. We believe that when wound care case managers are educated, supported, and empowered, patients heal, systems work better, and the outcomes?
00:14:45
Speaker
they speak for themselves. If that sounds like the work you're doing or the work you want to be doing, Lebellin Learning was built for you. Find us on LinkedIn and come grow with us.
00:15:00
Speaker
I felt like I was going to punch the person in the face probably 10 times. And I'm like, I'm so sorry if I cuss you out. I'm so sorry if I scream at you. It's like, oh, I'm used to this. im like oh Wait, wait, oh wait, waitt wait. They're used to the person that they're doing this to like screaming. Screaming and yeah because it was so painful back then. it was, so they injected dye between your fingers and your toes and the needle was like super long.
00:15:27
Speaker
And my toes were already thick from the skin, the thickening. So she had to redo it. Oh, my gosh. That's crazy. It's torture. It was. like torture it was think I'd rather have childbirth without pain medicine than go through that. it was terrible. It was terrible. Oh, my gosh. Because at least I have a child at the end of it, you know? Right, right, right. I'm just – This test was like, well, sorry, there's no cure, but here's where your lymphatic system is messed up.
00:15:55
Speaker
Great. Thanks. That was great. I was like, well, I need to take a look at that, you know? um So I did get the answers of primary lymphoma.
00:16:06
Speaker
And that's really where the whole journey started. That's where it began for me. It was like, how could someone live four and a half hours away from a medical professional who could have helped like me years ago and we had no idea?
00:16:20
Speaker
Right. no And that's where I was like, we're going to start a foundation just to get voices together. And that's where Ninjas Fighting Lymphedema really started as like a Facebook group, a support group for me, honestly. Because I'm like, how many people are out there like me? And I was blown away with, I mean, the first month or two, I had 2000 followers.
00:16:42
Speaker
like, what? you know And all I was doing was just sharing my updates, my journey, my leg. yeah I had no idea there were people out there suffering in silence like me.
00:16:53
Speaker
So did was there a lot, did you find a lot of people that joined that group that had, you know, the same thing that you had going on there? Oh yeah. The same story, the same misdiagnosis or undiagnosis, the same, I'm alone, no one really understands, I hide it you know. um and And a lot of people looked like me. Their limbs looked like mine.
00:17:16
Speaker
Because they had never had proper treatment either. I was just like, and a lot of them were like, I'm on this water pill. Oh gosh. But it's making things worse. You can't. No kidding.
Education & Advocacy Efforts
00:17:26
Speaker
I get so, but I want to take you back for, I want to take you back a little bit. And because I think this is significant. um You said something that to me hit me. Um, you said, oh my gosh, my leg looked like I had a parasite or my leg looked. And so for those of us who have, you know, been in wound care, for those of us that you have kind of like tried to understand lymphedema, we see pictures of phylae... Oh my gosh. How do we say it? How do you say that? i full lot
00:17:53
Speaker
I can say it in my head, but I can't say it out loud. I can't say it out loud. Phylaeosis. Phylaeosis. Yeah, see, now that I'm i'm on here, you know what I say it all the time. I say it all the time too. And like i don't know why it's not coming out of my mouth the right way, but you know that's the way it is. So that is like the end stage of lymphedema, of having this parasite. And it's always like, you see these pictures, you're like, oh my gosh, like that's awful. You see this. So if you're saying that your leg looked like that, I think those of us who can understand what that looks like,
00:18:27
Speaker
How devastating. Like, oh my gosh. And then to really not know and for people to not understand. um And then for a doc to say, hey, we're, you know, we're to throw a a diuretic and and, you know, and we're going to do all these things. I mean, that is, that is...
00:18:47
Speaker
It's just unbelievable. So tell me about your skin. Tell me about, did you develop any seeping, any wounds? Like, tell me about that leg a little bit. Like, I kind of want to understand, I kind of want our listeners to kind of understand, like, what that means.
00:19:01
Speaker
Yeah, absolutely. So I did have several papillomas on my leg. They were huge. One was so big that I scraped it against the door and it cut it off.
00:19:12
Speaker
It was so painful. Oh, no. I thought for sure I was going to get an infection. I just knew i was. It was, and it took months to heal. And it was on the outside of my calf or, um, yeah, on the outside of my calf. Cause I was coming in and it just hit it.
00:19:30
Speaker
It like cut it right off it, you know, and then it weeps. My leg did weep a lot. And, um, and then my skin integrity, this is really interesting. My skin was so thick and hard on the outside that No matter what I did, i couldn't get or like a ah soft release, like some softness to it. and That was because the inside was so damaged from the years of the fluid just sitting there. It turned into a sludge, like a toxic sludge.
00:20:06
Speaker
Kind of like the bottom of a pond if you drain it and you still can't get all that gunk out. That's what was inside my legs. so No wonder why I couldn't respond to like bandaging and things like that, that I was supposed to start doing as soon as I got this diagnosis. yeah And yeah, so my skin integrity was really, really poor at the time. and Interestingly though, I think I only recall having one cellulitis infection my entire life and that was like 11. Wow. Impressive. Good for you.
00:20:37
Speaker
Yeah. I'm still shocked. Like i don't, I don't have them knock on wood. um That doesn't mean I can't develop at any time. you know It's just, I'm very you know open to it, obviously because of my lymphatic system. But so far, that's the only time I recall having a cellulitis infection. That is phenomenal. I mean, I think that goes to show how much you how much self-care and how much you tried to take care of your skin and how much you looked at it and how much you you know were aware of what was going on. And so that's a testament to you to making sure that you continue to be healthy. um So good good on you, man, because I can guarantee that that's definitely not doesn't happen very often.
00:21:21
Speaker
I you know, and I know when I share that with people, they're like you said they don't believe me. But I'm like, honestly, I can show you I've never been in the hospital for an infection. I have never been on antibiotics for an infection except for when I was 11. And that was a whole nother story. I didn't have antibiotics, but the infection did end up going away.
00:21:40
Speaker
um But I've never experienced it. And um I think one, I don't get pedicures. You know, I do that myself. um I do live i like I live in a farm, on a farm. So I love the outdoors. So I would expect to get an infection there. But I'm always covering my limbs and, you know, making sure i wear boots and when I'm going hiking and and protection on my limbs in case something scratches me. So I'm very cautious, but I didn't know why I was being cautious. I was just like, i don't want to touch this leg. I didn't know the the seriousness of infections at the time. yeah
00:22:18
Speaker
Yeah, yeah. Yeah, you know what's amazing about that is that you're you're a strong person. It sounds like in very self-aware. Mm-hmm. And you were very determined, it sounds like, too, to get something done to figure this out. What's the next step that we can you know make this progress? But there's so many people out there that don't have that personality. And I'm sure when you met them through your Facebook posts that you probably realized that. Because I think people in your situation, they're the ones that are the chronic returners to the hospitals and the ones that get the infections because they don't understand what's going on and they don't understand that that self-care.
00:22:54
Speaker
So I think in our system, this is where we get a lot of that you know patient readmissions or you know patients that are in pain or they're constantly going to the ER. So it's just incredible um when you are persistent and you really try to figure out the answers and just how many people you've helped because of that tenacity.
00:23:16
Speaker
you know Yeah, it's it's really interesting you say that because even my clients today ah and my followers, um they're still in that mindset. And so I have the ability to meet them where they are because everyone is somewhere else in their journey. We're not, we're all at different points in our journey. And um the most important part for me is to meet them where they are and slowly introduce the educational components to it because it can be overwhelming.
00:23:48
Speaker
And if you overwhelm someone with all of these things that I have done, they're going to say, well, I can't do that. you know And I don't want that for them either. so i So I meet them where they are and then I, what can you do? what What are some improvements you can work on now? Even if it's like, I stopped drinking soda and I started drinking this, you know, or I walked today 10 more steps than I did yesterday. all of those things are improvements. And so we want to highlight that. Celebrate it. Because celebrate it. Cause I don't want you to go to the hospital all the time. I don't want you to be on all these medications. I don't want you to feel isolated.
00:24:25
Speaker
um You know, and I know not everyone is built like I am. I there's, there's, I think I get it from my grandfather. don't Well, you grew up, I heard farm. I heard farm. So the farmers, you know, like I'm just going to say amen. I'm telling you. Yeah. yeah I mean, he's he's in his 80s and he's still going strong. yeah So my husband, he goes, I don't think you're ever going to quit, are you? He sees my grandfather.
00:24:49
Speaker
Like, no, I think it's in me. You know, I think you just said something very critical. I don't mean to interrupt, but I do want to stop because something that you just said as wound care people, we try to reiterate this to everybody in wound care. And that's meeting the patient where they're at, because too many times I think. You know, you have this knowledge and like you've been through this. Jen and I working in wound care, we've worked with people. And so you have all this knowledge in you from what you've experienced. But going to the person that's struggling in front of you, it's so important to understand where they're at. Because like you said, that's where you get um positive results. You get buy-in. You know, you get people that are willing to do, like you said, I'm drinking soda. Now I realize what that does. And I switch to this because sometimes that's really hard to get people to to do that. So that's that's a critical piece, I think.
00:25:45
Speaker
And I think it's great that you said that because I think we're all trying to understand that better. Yeah, you know, because you have all this information and you want to share it all with them, but it it does become overwhelming. I mean, I remember when I...
00:25:59
Speaker
when the doctor said everything to me, I was still stuck on trying to say the word. right I didn't hear anything else that she said, you know? And then I was also stuck on there's no fear.
00:26:12
Speaker
And then it progressively gets worse. So she said so many other positive, she said other things that were positive, but I didn't hear them. I heard the three negative things. And that's where I was like, okay, I go home and I can't even...
00:26:28
Speaker
tell you what she said because I only heard these three things. And that's where we lose people sometimes. yeah And so that's really what you know i do is I just, I will always have this. you know It doesn't matter if I have a clinical background. It doesn't matter if I have a business background. It doesn't matter what I do. The most important thing is that I am Living with it. Right. And that's key. are living. it is not ruling your life.
00:26:57
Speaker
You have taken control and you are living with it. You are in control of it. And I think that that's a mindset that is hard for a lot of people. So that is amazing that you're able, yeah that you're saying, this is this is my lot in life and these are the extra things that I have to do. And so I'm going to do them so I can stay healthy. I mean, like...
00:27:21
Speaker
that's That's the pinnacle of what we want all of our people you know to do. and And to think that I have to imagine through high school, through grade school, i mean, the amount of ridicule, the amount of bullies, the amount of words that were used for you to really hate your body, hate your leg, you know, think that something was wrong with you as a person.
00:27:50
Speaker
And then having to take that and learn that that's not it. And then to be able to do that self-care. So to me, that, those are some serious mountains to climb.
00:28:02
Speaker
Yeah. You know, they were. And as a matter of fact, like the cover of my book, this skirt right here. so drop the skirt came from that. Um,
00:28:14
Speaker
So yeah, I'll share a little story with you. It's all about storytelling. No, no, no. This is definitely what I, right? Yep. So when I was in high school, I went through an identity crisis, obviously. And I was just like, I want people to just call me Amy, but they were like elephant leg, girl with a big leg, you know, kids could be wonderful sometimes.
00:28:35
Speaker
So I convinced my parents to enter this beauty pageant. And by the way, I didn't have to wear bikinis or anything. So I was like, Oh, I can do this. i can do this. And they they didn't want me to because, they you know, because of what I was going through. I understand.
00:28:52
Speaker
But I ended convincing them. And I remember walking into the pageant and I see all these beautiful young ladies and um I was like, I don't want to be here, but I was more afraid of my parents than losing the pageant at this point. gosh. Because I was like, I was on them for months to let me do this.
00:29:12
Speaker
And as I'm standing on the stage, I completely forget my speech. I had prepared for it and everything. And I am one to like, going to practice, practice, practice.
00:29:23
Speaker
So as I'm standing there, I see my parents out there and they just have this look on their face like, oh no, she froze. Mm-hmm. And so I decided to share why I was there. And I said, i feel like I belong in a circus.
00:29:37
Speaker
And I just wanted oh my name, just wanted my name. And the judges didn't really say much. They just had this somber face. They just were quiet. They were listening. And then um I go back in line and I'm like, I blew it. I'm just in my head, just negative self-talk and looking at all these beautiful ankles walking past me and these heels. And I was just like, those are pretty shoes. I wish I could wear those. And, you know, and as we're standing there, they're narrowing down the list of contestants who are getting into the finals. And I end up in the finals and I'm like, oh, they're just a pity you know a pity for me, this and that
00:30:20
Speaker
I ended up winning the Miss Junior America contest. whoa content but's end up I up winning it. And I was like on cloud nine for like two days at school. My trophy, my big old trophy was there, my sash, my crown. Everyone was like, congratulations, Amy. And then after the second or third day, even on the back of my book, it says the beauty queen with a big leg. That was what my name was. Oh my gosh. Oh, wow. Right back to identity crisis, right?
00:30:58
Speaker
So after that, I started wearing long skirts and dresses. And when I graduated high school, I went to nursing school. I wanted the hell to help. That's awesome. i moved rock I moved to Kansas City, went to Rockhurst University, got my nursing degree. And I was just like, I'm cloud nine helping people because it took the pain away from me. It took the focus away from me.
00:31:19
Speaker
And It got to a point where I couldn't wear scrubs anymore. I couldn't stand. I couldn't work long shifts. And my doctor was like, you can't really do this anymore. And I was broken. I was broken.
00:31:33
Speaker
And
00:31:35
Speaker
I went back to school, got my business degree. I'm like, well, maybe I can run a hospital. Maybe I can do this. And I did do stuff for 10 years, but I didn't, I didn't like it. It wasn't, it wasn't fulfilling to me.
00:31:47
Speaker
It wasn't like, I'm not really making change in people's lives. And I love the OR. I love the, you know, the critical step down. I love the fast movement, but I loved helping people.
00:31:59
Speaker
So, one day I was talking to a coworker and I was just, just kind of talking and I'd asked her if she wanted to go swimming. Now, when I went swimming, I like had a long swimming suit cover up and I covered my leg. And then I sat at the edge of the pool and undid it and slid in it thinking no one's going to see my leg. Right. Yeah. I can.
00:32:17
Speaker
They probably all saw my leg. Right. so I was like, Oh, okay. Well, she said something to me that was It broke me. She said, and then she said this about herself, fat girls don't swim in public pools.
00:32:33
Speaker
Wow. And I looked at her and i I said, what? And she goes, I'm not comfortable swimming in public pools. Now, the beauty of my condition is that it has allowed me to see people for who they are, not what they look like. Yeah.
00:32:48
Speaker
including myself. This is why I call my lymphedema a blessing because i understand that I may look pretty from the outside, from the waist up at least, know but I never felt like I was worthy enough to be pretty.
00:33:05
Speaker
And it allowed me to see people for who they really were, which is an amazing blessing. It really is. that is ah And that very day, which I was wearing this skirt,
00:33:18
Speaker
I said to her, because I make a joke about everything, I like to think I'm a comedian. And i said, well, at least your fat's distributed evenly. And she was like, what? I realized for the first time that we all struggle with something. yes You know, and that's the day I dropped my skirt and I started sharing my story and I stopped wearing long skirts and dresses and I started wearing leggings and bandaging my leg and wearing those adjustable wraps and just, I was going to own my story and freedom that comes from owning your story is far more rich than winning the lottery.
00:34:05
Speaker
Absolutely. love that. Wow. I love that. Yeah. and And that's when I really became on fire and started doing all the stuff I do now. Yeah.
Healthcare System Challenges
00:34:15
Speaker
And then you did. and you did by wrapping, by aggressively compressing, right? By, you know, it sounds like you had a couple of surgeries. Is that right? um okay Yeah. I've had three.
00:34:29
Speaker
Two were not very successful. And my last one ah was the SAPL, a suction-assisted protein libectomy. So it's a ly sparing liposuction. So it's not like um cosmetic liposuction, which i could you know I could use some somewhere. and you know I didn't have a lymphatic issue. Can you transfer it somewhere for me? That would be great. Yeah. Right. I mean, I already asked that. He said, no, absolutely not. He's like, you don't want this in you. Yeah.
00:34:58
Speaker
But my physician, Dr. Jay Granso, was actually the one who really helped me get back to a balanced life. Meaning he took four two liters of solid out of my leg. It was an extra 32 pounds that I was carrying around.
00:35:15
Speaker
So when I would walk, I would walk like this. yeah yeah And so my hips, my bone structure, everything was way out of whack. And... um he took also 16 inches of skin, which that's something he does not do typically.
00:35:33
Speaker
But earlier when I was mentioning how damaged the skin integrity was internally, when the cannula went in my leg, it came out the other side because the skin integrity was so bad. wow So he had to take that skin. wow So I had beautiful scar on the inside of my leg. It's actually really, you can barely see it now. um I had zero complications with the wounds. wait um They closed beautifully.
00:36:01
Speaker
I had no infections and um I'm now three, 4% larger in my right leg than my left leg. Whoa.
00:36:12
Speaker
Yeah. So, and it still takes a lot of work, but I now know what to do. And I won't go back the other way. And I, I also have lymphedema on my left leg. So since I have primary, it's already in me. Um, so I wear like a class two garment on my left and I wear two different classes on my right, but I'll have to tell you, it feels amazing wearing compression.
00:36:40
Speaker
nightly I love it. I, even on my left leg, I love wearing compression and People are like, well I'm so sorry you have it over here. i'm not.
00:36:51
Speaker
just, now I know what to do. Yeah, like it feels, it feels. I want you to say that again really loud for all, all of our lymphedema and venous patients to hear. want you to say, love wearing compression.
00:37:04
Speaker
That's right. I love wearing compression. do. that You will never see. The only time I won't have it on is in the shower. Hallelujah. Yeah. That's tough one to get people to agree to. I know. They're like, I don't want to wear that. Well, do you want to look like this? you know And I don't mean to be rude about it, but when I explain the physiology of what's going on and why compression is so needed, they're like, oh. And that's part of it. It's never been it's never explained thoroughly.
00:37:37
Speaker
And I think the reason that is is because clinicians don't have the time to thoroughly do what they want to do. And that's where I developed the lymphedema blueprint course for patients. okay Yeah. Tell us a little bit more about that. I want to hear about that.
00:37:52
Speaker
Yeah. You know, so I go see my therapist all the time and I see how hard she works for me and other people. I've also seen her literally pull money out of her pocketbook and pay for compression and things for people. And it's not...
00:38:08
Speaker
we don't get the help we need. It's not because they don't care. It's because there's such a lack of resources and time and education. And so I thought, well, how can I give back in a way that helps the clinicians and the the people living with the video?
00:38:25
Speaker
Oh, well, I can tell them what to do a course. And I don't people to say these things. And so I created this course where Patients can take it in the comfort of their own home. It's a self-paced study.
00:38:39
Speaker
There's quizzes. there's There's workouts. There's information. And it starts, the course starts with mindset because we have to understand you have to transform your mind to know how to walk this journey because it's not a sprint it's a journey and so we have other people in the course teaching the course as well as myself i have my own very doctor talking about surgical options i have other clts talking about compression nutrition mindset movement i have um
00:39:15
Speaker
a breathwork specialist in there. yeah I have a pelvic health specialist in there. um And it's it's an evergreen course. So as we continue to learn things, I'm going to continue to add things in there. But it's something for patients to go home and say, okay, I've been newly diagnosed. I don't know where to start. And I didn't want people to do what I did.
00:39:38
Speaker
go find this treatment, which was wrong, or find this information, which was wrong. You know, I had two failed procedures. I don't want people to go through these things. And so I vet everything out to the best of my capabilities and show the research and then show my own journey. And I give it to them all in one place.
00:39:59
Speaker
And they have like 67 pages of literature that they can also print to go um, go over as they're watching the videos. And, and at the end of it, they get this cer certification that they, they are now the expert their own body.
00:40:14
Speaker
This is, this is awesome. Therese and I do a lot of education. Um, we're, we're, we're building some very cool things that we can't talk about, but, um, education wise, but Amy, you are, you're, you're living our dream, man. Like you're doing it. Like, i more there's wait there's more oh so i've now separated the course and it's in the process of getting c certified because so now let's say mindset masteries for the patients but now for clinical individuals who it does it not just for therapists but for physicians nurses athletic trainers let's talk about the psychology of communicating with your patients and then let's talk about nutrition for your patients so now i'm separating the course and i'll have a course for um clinical professionals and then i'll have a course for patients this is awesome
00:41:11
Speaker
My goal is like, how can I show the world how important the lymphatic system is? No one's going to really want to take a course on lymphedema necessarily, but they will take a course on how the body works, how the lymphatic system works, and then what happens when it's malfunctioning or missing.
00:41:28
Speaker
Then the lymphedema comes into that. So I plan, I I've like, I'm, I'm working with a couple of CE, providers yeah writers and consultants. I'm just the girl with the idea. i am not the expert. But I feel like this is the way we can move the needle forward, especially when there's innovative things going on and the lack of awareness in education. and then I was like, well how can I give back again to the people that are our first responders? And that's by offering CE credits for them to educate themselves. Amy, that is that is amazing. I mean, I have to say, yeah. It's so needed. Oh, my gosh. I mean, that's, you know, Therese and I, we are on a mission to educate ah as many people as we can, especially we we really focus on home health. We focus on a lot of those types of boots on the ground clinicians. And I'm here to tell you that they are hungry for it. They want to know. And because they want to be able to educate the patients in their homes, they want to be able to sit down and explain why this is happening. I can't tell you how many nurses that I've worked with, we've educated, Tereza and I both, where when we really explained it to them and then they went back to the house and they sat down with the patients and then explained it and drew pictures with them, the patients then said, yeah.
00:42:49
Speaker
Oh, I understand. I didn't know that. I didn't know. i Right. they're like, oh, oh. And then they, then they, and then they say, oh, well, that's why I have to wear compression. Well, that's why this has to happen. And then before you know it, now the patient starts actually trying to do these things, right? They're trying because now they understand.
00:43:08
Speaker
And, and then their wound heals or their leg gets smaller. And, and what I love the most is when the nurses come back and they say it worked. Right. they get You see the fire in them again. You see the light. And then they're reminded why they started this journey in this place. Why they chose to be a nurse. yes Why they chose to be a therapist. And and we've lost yeah that because we're in a world of fast, fast, fast pace. I don't have time to treat my patients that the way I want to treat them. My patients don't understand the importance of this. And and I just, I want to slow it down and and give them something that
00:43:48
Speaker
they can believe in again. Right. And that's, and, and be on one accord together and work as a team. And, um, so that's really how I combat the misinformation out there, especially with physicians and the lymphedema. I mean, can we tell them to please stop, uh, giving loop diuretics for, uh, for edema in legs? Can we just, can we just start there? Right, I'm on that soapbox all the time. And i had literally one um
00:44:21
Speaker
one client the other day, was like, my doctor said not to listen to you because you don't know what you're talking about. Oh gosh, stop. Gotta love that. What's their mailing address? I'm gonna send them some information.
00:44:32
Speaker
oh my gosh. actually What part of my am I missing here? She's like, well, I need the diuretic because it'll make my legs smaller. Do we need to explain? um yeah Can we explain to them that, you know, I mean, the loop diuretic works in the kidney?
00:44:48
Speaker
And it doesn't. and and Yeah. Lymph fluid is not the same as fluid. Exactly. It's trapped in the leg. In the tissues? Let's talk about the tissue health. Right.
00:44:59
Speaker
Yes. it So, yeah. i But I love it because when they come back and tell me, that just shows me where my work needs go. Right. Exactly. Exactly. Exactly. When we teach this, when we go out and we teach, we're like, please, let me explain to you why they don't work, why diuretics don't work. And they have this, ah, because I'm always like, let's talk about a loop diuretic because they're going to give LASIKs or something like that. Let's talk about how that works. Let's talk about how all of that works. And then the ah, the aha moments, they're like, oh.
00:45:29
Speaker
And i I was like, well, that where were you at for pathophysiology? I'm like, I mean, like, let's, I mean, like... Hello, my name is Max Bierup and I am the owner of Maximilian Krayos and the video producer helping bring Healing by Design to life.
00:45:44
Speaker
I've been the wound care space for over six years and I've seen firsthand the challenges clinicians and patients face every single day. It's a complex problem and honestly, it's one that's still incredibly underrepresented and definitely undereducated.
00:45:59
Speaker
That's what pushed me into this space. I help healthcare and wound care brands bring what they do to life through video production, commercial photography, and even multimedia design that makes it clear, credible, and meaningful enough to create real change.
00:46:13
Speaker
I take complex care and turn it something that people can understand, trust, and actually act on. Because better communication doesn't just grow a brand, it supports better care. I'm especially passionate about working with people who are trying to move healthcare forward and not just exist in it. Make real change. And if that's you, i would love to connect. My name is Max Bierup, and I'm the owner of Maximilian Creatives.
00:46:37
Speaker
Like, I don't, but it just, you know, I guess it's like, okay, okay, heart failure. But again, and if you have edema from heart failure, I mean, but that is such a different animal. It's not even in the same animal. It's not even the same species. It is literally like that altogether different. And so, yes, I can understand that in that sex situation. But when you have that system, that inflammatory protein-rich fluid that is trapped in those interstitial spaces, I'm really sorry, man, but, you know, unless we push it back and do the things we need to do, that loop diuretic ain't going into that leg and grab it in out of there.
00:47:13
Speaker
No, it's just going to make it worse. And know what I say? i have a thing of honey in my in my kitchen, and it's crystallized. And I keep it because i have good honey, too, by the way. But... It's crystallized. And what I do is i show my clients a visual.
00:47:30
Speaker
When you dehydrate yourself, this is what happens. And you can't squeeze it out. When you're hydrated, this is what happens because lymph fluid is yeah thick. It's not like regular fluid. So when you dehydrate yourself, it's going to make your lymphedema worse.
00:47:45
Speaker
And that dehydration can come from the diuretics. It can come from Anything, triggers, nutritional triggers, inflammation triggers, you know, whatever it is. But if you keep it thin and moving, it's going to move through the tissue. Yeah.
00:48:00
Speaker
You can move it. They're like, oh, so I always keep this in like cabinet because sometimes people just need a visual. yeah Yeah, that's true. You know what I'm like, this is what it is, you know? But what
Policy Advocacy & the Lymphedema Treatment Act
00:48:12
Speaker
really gets me too is that, you know, and I know I want to get into this in just a second. I know that you had ah something to do with the Lymphedema Treatment Act.
00:48:20
Speaker
I heard, i I read or something. But what's interesting to me is that on the SEAP scale, so if if a venous insufficiency patient has a wound, we do have a secondary lymphedema. And, you know, we need to be cognizant of that. And so again, i want to stress that this compression and this diuretic situation is not just for primary lymphedema. This is for lymphedema across the spectrum. So we don't want to use a diuretic on a patient that has a VLU, that has a secondary lymphedema, which most of them do, because it's going to do the same thing, which is dehydrate, gum up the leg. We can't move the fluid. Um, and so I think, uh, you know, again, lymphedema is so much more prevalent than we really, really understand. But going back, tell me a little bit about how you were involved in that lymphedema treatment act.
00:49:09
Speaker
Yeah. So, um, just like anything else, I was like, how can I help? What can I do? And when I started to see that insurance wasn't covering our compression, i knew it wasn't trying to cover my, it my,
00:49:21
Speaker
my and are my surgery, you know, just anything. oh yeah, that's a whole nother topic. like Yeah. yeah um it It really bothered me because I'm like, wait a minute, you covered this. I'm not going to say what this is. You covered this, you covered that. And, but you won't cover right this, which we need. It's, it's, it's life saving for us, you know? And so when I saw what Heather Ferguson was doing, created the Lymphedema Treatment Act because of her son,
00:49:51
Speaker
I said, you know, I want to get on board with this. I want to help this woman. And so I did go to DC and I did lobby and that was really eyeopening. um They really don't care about it no That's right thats yes really what was said to me. and I was told that healthcare care is a privilege. No, no, no. Oh no. Really? You really were said that? That was told directly to you? Wow. Yeah. So I got him good though. I got him real good. So this was before my surgery and I was with my team and he was just like,
00:50:22
Speaker
It's a privilege, it's not a right. I go, okay. So I get fined if I don't pay for this privilege. And then when I do pay for this privilege, you tell me I can't use the privilege.
00:50:32
Speaker
Now I bring out my EOBs because let's talk money because that's what's really important to you, right? And he was just like, ah let me show you my EOBs and let me show you the the disability you wanna put me on for the rest of my life rather than taking care of me, which would cost whole lot less.
00:50:51
Speaker
who And my EOBs were upper $600,000 and, and um which could have been preventative by the way. And so I go, so I'm showing him the money and I'm showing like where the money's going. And then you'd rather put me on disability my whole life. So this is the amount of money you're going to pay for me for my entire life compared to just paying for my compression. Right. Yes. and my manual lymphatic drainage and my pump or whatever else I need.
00:51:20
Speaker
Then I unwrapped my leg because he thought it was a prop. Wow. I unwrapped it and I said, so is this a privilege or is this a right?
00:51:33
Speaker
Oh my gosh, good for you. like mic drop moment right there. yeah And I just let him sit with that for a second. And then he said, where's the, I'll sit. Are you kidding me? yes ah oh wow Oh my God. Okay. So I have to tell you at least four times during this conversation, I have like the biggest goosebumps that like pop up but that.
00:51:53
Speaker
Yeah. Oh my gosh. It was, i had to collect myself because I really wanted to like fly off the rails and yeah But I'm like, these are the type of people that if you don't come correct and come with authoritative sort of voice, authoritative, like this, I know this, they're not going to listen to you.
00:52:13
Speaker
And they definitely weren't going to listen to me. um And when I just was like, matter of fact, right he was just quiet. He didn't know what to say.
00:52:24
Speaker
And then when I and you know unwrapped my leg and and I had a couple of people with me, they were just like, She's really going to it. She's going to do it. You know, because you got to be respectful. And a staffer was sitting there and the staffer didn't know what to say.
00:52:40
Speaker
and i was just like, with all due respect, let me just show you the financial burden, not only to me, but to you. And then let me show you this. And and so it was really an eye-opening experience. And that also showed me that there's just a lack of education and awareness. Wow. yeah That's it right there.
00:53:00
Speaker
Wow. That is. yeah And I mean, single-handedly then that Lymphedema Treatment Act. I mean, it's still, people are still trying to learn about it, but thank you. I mean, thank you. From the bottom of my heart as a clinician and as seeing what's out there and and working with home healthcare care agencies across the country that are working with these patients. Thank you, Amy.
00:53:20
Speaker
That was, yeah, you couldn't have, that is so huge. That is so huge. Well, you know, i i when I saw what Heather Ferguson was doing and why she was doing it, my heart was immediately connected to hers. And she'd been doing this years prior to this. I mean, Heather has been working on this for 14, 15 years, I think. And she's still moving the needle forward, even though the LTA passed 2023.
00:53:48
Speaker
2024, 20, was it 24? think it was 24. I don't even know. 2024, when passed, I, there's still of work and she's constantly trying to move the needle forward.
00:53:54
Speaker
even know so twenty twenty four when it passed there's still a lot of work and she's constantly trying to move the needle forward And so what I can do best to support her and her initiative is continue the research, continue ah the education, and then share that information, not just with patients, but I work with DME providers, I work with hospital systems, and I try to share this information because everybody's dealing with it. yep And they make it confusing on purpose, they as in the insurance companies.
00:54:28
Speaker
And I've gotten really good at reading spin downs and taking their language and saying, no, no, no, no. Here's what you say, actually. And getting these garments or surgeries approved for people because, again, it's just.
00:54:42
Speaker
Yeah. just so know're like fight yeah I think a lot of people get caught up with the insurance on on just anything in the health related field and they stop right because they don't understand it. They can't get through it. They don't have anybody to to advocate for them to understand it. And I think like you said, I think sometimes it's done on purpose for those very reasons.
00:55:03
Speaker
But in the long run, like you said, it's more expensive, right? I mean, if they they would just make this easy for these patients and help them when they need the help, you know, then they wouldn't have those chronic conditions and payments that have to be made. Right. And and again, it's just it's just education and awareness.
00:55:23
Speaker
And, you know, so... That's really the the the problem, you know, and it's with everything we're talking about. Education and awareness. And that's with wounds. And, you know, we talk about lymphedema. We talk about wounds. It's education and awareness. and And, you know, we actually will have another podcast about um education. And where is it? Where is it at? Because we we do have a lot of stuff around us. But... Where is it truly at? You know, we need to start in medical school. They need to learn about lymphedema in medical school. We need to learn about it in nursing school. We need to understand the difference between primary and secondary lymphedema. We need to understand how to recognize it. I never learned that in nursing school.
00:56:05
Speaker
It was never taught. i didn't either. Yeah. Yeah. And I had it. right I literally had it and I had no idea what it was. You know, years later, i connected with one of my former teachers at Rockhurst University. Her son was actually one of my marketing directors for my foundation. wow And we just happened to like...
00:56:24
Speaker
meet and he goes, wait a minute, you went to Rockhurst. What year did you graduate? And I was telling him, he's like, did you know my mother? I'm like, oh my gosh. So we got on the phone together. She's like, I remember you. I remember your leg. I remember it was like it's such a full circle moment. And she's like, what do you do now? And I told her, she was just like, this is amazing. And she, know, she's since then been retired and stuff, but she told me the same thing. I really had no idea.
00:56:54
Speaker
I had no idea. Yeah. Yeah. yeah You know, and so anyone out there who's listening who is in the clinical field, don't beat yourself up for not knowing. it' None of us knew, you know, doctors only get 20, 30 minutes of the lymphatic system during their entire educational training. Yeah. Awesome.
00:57:14
Speaker
Or one slide. The problem is if you're refusing to learn. and Oh. that's Wow. Yes. Yes. It's called practicing medicine. It's not called I know all medicine. Right. Oh. You know? Yes. It's really important for people to know, like, it's not your fault that you didn't know. Yeah.
00:57:35
Speaker
When it becomes your fault is when you refuse to learn. Oh, yeah yes, absolutely. and And I love that. That was so, that again, the the amount of moments of of of just mic drop goosebumps here that you are, it's just, that's that's exactly it. you know And again, with with working and you're a nurse, we're all nurses here. We understand, you know we we're okay. We're okay if you don't understand something, let us educate you and then let's work together as a team.
00:58:04
Speaker
to make our patients better. And so that's exactly what you're doing. You're building the teams, you're building the education. Not only that you live it you are the person that has had this, this disease process your entire life. So
Empowerment Through Personal Journey
00:58:21
Speaker
tell us just a little bit more about your book. Like, I really want to learn about your book a little bit.
00:58:27
Speaker
Um, so Drop the Skirt, How My Disability Became My Superpower was a book I did not want to write. I will start with that. I did not want to share my story like so many other people out there.
00:58:41
Speaker
um I was embarrassed. I was ashamed. And I thought, I'm not qualified to be a writer. Who's going to read my story? And my husband's like, you have a story and you have to share it. And so um he was really the one who motivated me, inspired me and truly believed in me to share my story. He is the one who has actually been pushing me this whole time to do the things that I have been doing.
00:59:07
Speaker
Even though I'm on the front end of things, I have an amazing husband on the back end who does all of the technical things for me as well. And um really has shown me the journey that was laid out for me that I wasn't able to see.
00:59:26
Speaker
What's his name? Give a shout out to him. What's his name? Will. Will. Yeah. So Will has always seen me as how I see myself now.
00:59:38
Speaker
And he married me when my leg was at its worst. Wow. So that's a whole another conversation about Amy part two.
00:59:48
Speaker
what to yeah And um so when I decided to share the story, i really wanted to share the beginning and everything I'd been up, been through up to that point. And um it's not just about lymphedema actually. I've had quite a few men and women who have other conditions or diseases that felt the same thing I've experienced with my own journey.
01:00:16
Speaker
And that is the isolation, the undiagnosis, the not understanding, um, the medical system. and really the, when you have lymphedema and I can only speak about lymphedema, I can't speak about any other condition.
01:00:35
Speaker
but you go through all the stages of grief. Oh yeah. a ba And I wanted to share that. And I wanted to normalize that because people think there's something wrong with them if they're angry or they're wrong, something's wrong with them if they're sad, or maybe they're not allowed to be happy.
01:00:53
Speaker
Yeah. No, how can I be happy with this? Yeah. How can I love myself with this? How can I even look at myself in the mirror with this? So I share all of those things about my own journey because I want people to know that this is normal.
01:01:12
Speaker
And it is okay to feel these things. It's not okay to stay in them. Yeah, absolutely. you know So your book kind of focuses kind of on all sorts of things, I would imagine, your journey, the lymphedema, but also how to work through loving yourself and how to work through getting to that acceptance level and taking care of yourself. So again, yeah, I'm buying that book. It's happening. Like, I'm getting it and the the other part of it is how to advocate for yourself. That's a big one.
01:01:44
Speaker
That's how I end the book because that's where I'm at now, advocating for myself. And I have found comfort and healing in advocating for other people. Yeah, I bet.
01:01:57
Speaker
My purpose. okay no Why did I have this? Why was I born with this? Why? Now I ask, well why not me? Yeah. and i And then I thank God for picking me for this.
01:02:12
Speaker
Cause it really is my blessing. yes And i could not imagine any other journey to be on, honestly, you know? And, you know, even when we don't understand what's going on in the midst of the storm, we must have faith, no matter what that faith looks like to somebody, you must have faith that you're meant to be here and that all storms do pass.
01:02:38
Speaker
They do pass. Now, do you need to get an umbrella? Most likely. You might need a boat. You might need an anchor. But those are tools to use to get you through the storm.
01:02:51
Speaker
And that's what I share. That is, that is. a and So tell me the the name of your book again then? Right, right. ah Drop the Skirt, How My Disability Became My Superpower. Awesome. That is awesome. Well, lot of people are like, what does drop the skirt even mean? I'm like, drop the skirt. And they're like, what? No.
01:03:09
Speaker
But it's really important, you know? Now, Amy, that is i cannot thank you enough for spending time with Therese and I today. i cannot thank you enough for be being willing to be raw and honest and and telling us these stories. I could probably spend four more hours listening to your stories, um but we don't have that right now.
01:03:30
Speaker
So we're going wrap it up. And and again, so there's there is Amy Rivera. Is it amyrivera.com? Is that the... Rivera method.com. Okay. So I say everybody that's listening, go look that up.
01:03:45
Speaker
ah and And Amy, thank you. Thank you so much for being a guest on the very first inaugural episode of healing by design powered by POSIC on behalf of Teresa and i we are so excited to that we could talk with you. And and again, thank you for joining us.
01:04:04
Speaker
Yes. Thank you. Thank you for having me. It was quite fun, actually. loved it. It was fun. appreciate being on here. Wonderful. Thank you. And that's a wrap on today's episode. Thank you so much for spending time with us. These conversations are why we do this, and we don't take it lightly that you chose to listen to us today. Before we head out, just a reminder. Everything you heard today is meant to educate, not to replace the advice of your own health care provider. Please don't make medical decisions based on what you hear on this show. Your provider is the right person for that. Our guests share their own opinions and experiences, not the official positions of POSIC or anyone who supports this show.
01:04:43
Speaker
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01:04:44
Speaker
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01:04:54
Speaker
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