091 Mighty-Well, with Emily Levy

personal level, like what helps motivate you to keep on doing this?

Really, it's been around meeting other people like you where, you know, I felt so crushingly alone for so many years because I didn't know anyone in my day-to-day life who, you know, outwardly looked normal but was going through a lot of health challenges. You know, what's out there is, you know, you see the kids with cancer or you see the old people going through health challenges, but you know, what about everyone else in between? And I just felt like we were so ignored. And the more and more people I talked to like yourself, I was like, you know, there's millions of people who have.

Welcome to the Lyme Voice Network. We are chronic illness warriors, caretakers, and advocates who overcoming illness in all of its many forms. We created this show to inspire, educate, and encourage you on your path to wellness. We're here to help you put the puzzle pieces of healing into place. Join us and our network of Lyme warriors as we discuss how fighting is a mindset, healing consists of choices, and living is the outcome.

Wishing your doctors could communicate and come up with a cohesive plan specific to your medical needs and genetics? At Invita Medical Center, they offer a team-style approach, giving you the opportunity to heal. In addition to a commitment of providing radical love and care for their patients, they are strategically located in sunny Arizona because Arizona offers offers the best integrative medical laws in the country. Call today to speak with one of their patient care coordinators. You can find them online at invita.com.

Line Voice thanks Invita Medical for the continued support. Please reach them at 1-866-830-4576. Hey, Lyme Voice listeners, we love bringing these episodes to you every week. If you would like to help us and support us, there's several ways you can do that. Those are all listed at lymevoice.com, and if you look there, there's ways you can donate even as little as $1. Any would be appreciated to help continue to get the message out, to help fight, heal, and live. Thanks again. Welcome to Lion Voice, where we are getting down once again. You've enjoyed my music taste, sweetie?

Yeah, I like that you're sharing your musical interests with people.

I know the world needs more music, more joy, more laughter, and that's what we're doing here at the Lion Voice, having a good time in the midst of some terrible circumstances.

Yes, and music's been a big change. Well, not for you, but for me, music's actually something that I now use for energy and to—

it's good energy. God, the right music. Yeah, don't listen to death metal. I mean, unless that's your thing, but you know, to each his own, right? But like something that brings something positive.

I don't like rap because, well, this is— I can't understand it, right? If I can hear the words or the lyrics Yeah.

On this week of episode, welcome to episode 91. This week we have Emily Levy from The Mighty.

Yes.

And Mighty Well.

Yes. So if you've been in the chronic illness game very long, you've probably come across The Mighty. They create a ton of online content and they have a great community, great blog posts where people can submit their stories. It's just a huge source of encouragement for us.

Yeah.

And, um, they also have medical supplies like backpacks for IVs and all sorts of stuff that, um—

yeah, incredible story. Emily was affected with Lyme, of course, and during her process she noticed a, a lack in the market, provided that fix with her, uh, IV covers. And, and, and it made it— I mean, it's really encouraging story because she not only helped others, but she helped herself at the same time. She monetized what she was doing in order to survive, but also to be able to help others. And that, I mean, that's the fight, heal, live attitude.

Yeah. And then also to give her a way to thrive, like to not be bound by the limitations of not being able to go in and do a normal job. And that's a question we get routinely, is how do you pay for all this? How do, how do you work when you're completely disabled? And yeah, you have to think outside the box.

Yeah.

I mean, so I've been home from Invita now. For new listeners, I— for those of you who haven't gone back and listened to all the other episodes, I got infected when I was 18, didn't find out until I was 36, but at that point had been very, very disabled and in excruciating pain. So went through treatment, recovered, and recovered from all the neurological issues. And doing good. It took me about 4.5, 5 years to be able to lift weights, to be able to exercise and really be in control of my health and not taking hundreds and hundreds of dollars of supplements. And I had really just gotten there in 2018-ish, end of 2017, and then was reinfected and got a whole new bite and a new bullseye rash. And it hit my neurological system within a week to 10 days. And that's been what we've been doing for the last 15 months is I've had to go back through treatment and I found some treatment here in Denver or in the Colorado area, but not effective, not for the neurological stuff. And so I went back out to Invita Medical because I believe like they have one of the best neurological repair programs that I've seen. And they're the type of clinic, it's a, you know, you're there for 2 or 3 or 4 months And but it gets people who are functioning at a very low level up to a much higher functioning level.

Yeah.

Yeah.

It's been huge for you and we're so happy to have you back. I'm sure our listeners are as well. So you've been back for what, 5 months now?

Yes. And I feel like the one of the questions I get from people is like, how are you doing? And I always talk about those, right? It's so complex when you have an illness that's impacting so many aspects of your life and controlling how you feel for not just days or months, but years. That's— those are big, hard questions. Like, how are you doing right now overall? Emotionally, spiritually, physically, like neurologically?

Yeah, there's a lot of areas that can involve a lot of discussion.

So I feel like my, my biggest issues when I went out there was neurological— insomnia, twitching, severe cognitive decline. My hair was falling out. And so a lot of those things have reversed. I don't feel like I'm dealing with any physical symptoms at the moment.

I am on medication for sleep, but the moment being the key because tomorrow and last week.

Yeah, I mean, I do have those. I do have days where I'm just it's a, it's a lower level. It's a more extreme level of fatigue than like, oh, I got worn out. But I feel like my biggest struggle is the emotional side at this, because I think physically I'm probably somewhere around like 80%. Yeah, maybe 75, 80%. I can walk, I can do yoga, I can lift weights, light weights. Um, and I feel like cognitively I'm actually doing pretty good too, do you think?

Yeah, I mean, it's been— it's, it's— you're growing and regraining. I mean, it's, it's almost like, uh, you're rebuilding your muscle, your cognitive muscle.

Yeah, you're right, it is more of like, okay, doing more of work that would overwhelm me or stress me out when my brain wasn't working. And then the spiritual side of things, like, we talk about the social and emotional all the time because to me, it's just necessary. And because Lyme takes away, not knowing, not having a diagnosis, living in chronic pain, it takes away your joy, it takes away your spirit, it takes away the true essence of who you are. And so I have felt like part of our journey is what our friends Heather and Steven Groeters call like wholeness.

Yeah.

And I feel like that's been, even though the last 15 months have been very difficult and very expensive and very tiring, 'cause we are back at this whole thing, there has been an immense amount of growth because of what we've lost 10 years ago, right? Like, I feel like we're still recovering from the losses of the first time I went through treatment in 2013. And, and, but it's made us want more. And it's made me realize, and I was having a text message with Suzanne Burden Cross, one of our co-hosts, and she and I just— she called it the crazy dance. This crazy dance of trying to put your life back together physically, spiritually, emotionally, financially. Like, it's so complex. And it's hard to figure out, like, oh, is it is this a worthy endeavor? Is it worthwhile to spend years? Not just— right, we're all growing and transforming as people. If we're conscientious human beings, hopefully we're trying to grow and transform. And we're in our 40s, so that's kind of part of the journey anyways. But in wanting so much more, because I think that if you don't fight for things— like, early on in my illness, When I was living with chronic pain, no one was helping me fight. No one was advocating for me on any level to even, like, hope that that wouldn't exist in my life anymore. And I feel like what we've realized through this second reinfection is the amount of spiritual growth, that growth towards wholeness, to take back so much of what has been taken.

Yeah, and even the comparison from us this time through the infection versus the first time has— it really proved to us how much we've learned, how much we've grown through this.

Yeah, for sure.

And made us re-answer those questions.

Well, and I feel like the other thing we've been doing for the last couple of years is like, what are our limiting beliefs? What are the areas of our life where we're not really strong, and why is that?

Yeah.

And there's a ton of reasons because I've been sick a long time. This, like, freaking ridiculous amount of sickness and doctor's visits. And we have kids with special needs. We have one kid with congenital Lyme who has a lot of injuries and ongoing stuff. And then we have special needs with— we have two adopted kids and they have special needs, emotional needs and educational needs. So I feel like it's this gigantic juggling act of you throw in Lyme and you throw in additional sick people and your life—

I mean, life in general is not easy.

It's not.

I know, uh, you know, it's just, it's just the way it is. And then you throw in Lyme on top of it and sickness and all the problems that come along with that and the social-emotional aspects and how it destroys relationships, you know, relationships that would normally be strong this thing just touches, you know, that Lyme NATO touches down in your life and stuff goes flying.

Yeah. And so it's just kind of been that process of like, okay, here's where we're at. Yep. Another year and a half of our life went by and was deeply impacted by this illness. And yet not stopping there, right? Like saying, okay, And I feel like I, you know, when you are in bed in pain and all those things for so many years, and then you get to that spot where you're not in pain, you know, it's— I don't know, it's just made me want to fight in different ways. Because when you give up something, if you don't fight for something, if you don't fight for wholeness in some area of your life, then you get whatever you get. And when you're dealing with a chronic illness that costs a fortune, that's poverty and lack and very limited options. And so that's just what we've been going through is trying to meet all those needs, trying to meet our own needs, and then trying to come at it from a place of strength.

And when you're not strong.

When you—

yeah. Yeah.

How do you, how do you, how do you manifest that amount of strength when you just don't have it?

I don't know. That's what we're trying to figure out. I'm constantly texting people and talking to coaching people and just saying like, you know what, this fight is immense. It just is. It's immense. And trying to figure out the conditions that you need to make your life work for you. And that's what Emily's interview is. She created a company that worked for what her capabilities were.

Right.

And that's powerful. Yeah, you do, you guys. If you are waiting for someone to solve your problems, oh man, it's not gonna happen. But there is, it's like weightlifting. It sucks sometimes, but like you build those muscles and then you have more muscle moving forward for the next thing.

Yeah.

And it's little step by step. We've talked about it many times. I mean, when you started exercising, you walk to the end of the driveway and back, to the mailbox and back, and it was little steps, right? And that was for years. And now you're strong again, where you're at 85, 90%. And that didn't happen overnight. That wasn't one pill. That was, you know what, repeated failures in a sense.

Yeah, it was consistency. Well, it was consistency. Okay, that's kind of where I'm at emotionally now. Wouldn't you agree? I think they were taking all these little baby steps to heal. I had started to do some counseling and some EMDR. I'll give you an update, it hasn't really unfolded very well for me, but it was kind of circumstantial, I think. But I, I mean, that was one of the things I told you. I was like, I don't know if I have the emotional capability to do this right now, right? Because there's other stuff going on with our kids that we go to counseling for, and right and I want to not push forward. Remember how badly I told you it took me so much courage to text my therapist after 2 bad sessions that left me like emotionally drained, very silent, dealing with, you know, depression for a day or 2 after each of these counseling sessions? And I told you it took me so much courage. I literally was like telling myself, be brave, make that next appointment. And so in a sense, like before it was physical, and I feel like this time it's really been those baby steps of Okay, I can't stop here because I don't want to be here emotionally, physically, financially, or spiritually a year from now. Not even 3 months from now. Like, 3 months from now, I want more emotional stability. I want my nervous system to not go into fight or flight all the time. You know, I want to have more stamina. And so it's, it's, it's immense figuring out what those conditions are and then how to make them work for you. When you have all these complexities. But people are doing it, and that's why I love bringing these stories to the mic, is because it feels impossible, and it is on a lot of levels.

It is. And it's only the strong that survive, in a sense. But, uh, and I mean, it's so hard because we're all weak, you know. It's, it's not even the strong, it's the determined. I mean, how many times have we said stronger have fallen over over these circumstances, because we're not strong, but we don't give up either. I know you guys are going to enjoy this episode because we have our special Lion Voice correspondent Jessica Donaldson doing this interview. Yeah, and her— we kind of messed up the rotation a little bit.

This was her actual first episode that she ever It didn't mess up, it just—

we played them out of a sequence of recording. So this was her, and you might have heard her on some of the other ones, but this was her first official interview, plus— which she knocked it out of the park, it's awesome interview— plus The Mighty was the first publication that started her down the path of advocacy. So this is a good moment, and yeah, it's fun. I know you guys are going to enjoy this episode.

For nearly two decades, Invita Medical Center has been leading the way with the latest in personalized treatment options designed for patients dealing with Lyme disease complex. At Invita Medical Center, they offer a team-style approach and the latest technology regarding treatment and testing at an unmatched radical love and care environment for their patients. Call to speak to one of the patient care coordinators today to learn why hundreds of patients choose Invita Medical Center each year. You can find them online at invita.com.

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Okay, so welcome to Lime Voice. This is Jessica Donaldson, my first guest host interview, and I'm kind of fangirling out a teensy bit because I have Emily Levy on here, and she actually started and is the CEO and founder of MightyWell.com, which has a network called The Mighty that I got my start in my first publication on with my blog. So now it's even more exciting that she happens to be the person that's my first interview for Lime Voice. So welcome, Emily. I'm so grateful for you to come on this show, and I'm really excited to dig in with you today.

Thank you so much for having me, Jess, and the Lyme Voices team. I'm, I'm really excited to share with all of you my story, um, as well as the MightyWell story.

And I'm really excited to hear more about how you formed something so grand and that's reaching people on such a big level and such a big voice for the chronically ill community that's not just pigeonholed for just Lyme disease, that you reach so many different platforms. So begin by telling us an overview of your journey through illness, because that's so how you ended up starting MightyWell. I mean, I'm sure it wasn't just a dream to help sick people. You got sick and then started helping sick people, which is how it goes. So give us a rundown of your journey so far with chronic illness, your symptoms, diseases, things like that.

Sure. So I'm sure with anyone listening who also has chronic illness, it's a long journey. And I am now about 6 years into the treatment process. But my story is very similar to many others with chronic health challenges. For me, it took about 7 years to get an accurate diagnosis of Lyme disease and co-infections, you know, after searching for years and years. I was first sick when I was 12. I wasn't able to finish the 7th grade that year, you know, moved back to my mom's home state of Rhode Island to try and be closer to family because I was experiencing at the time extreme weight loss. I lost about 20 pounds in a month.

Oh, wow. And that young, that's a lot of weight to lose that fast.

I was 12. So people were like, what is going on with her? Light sensitive, sound sensitive, things like taking a shower even hurt. Went from playing 3 sports in high school to by the time I got to college, it was really challenging just to even walk to class. And eventually wasn't able to do a full course load, but was so proud of myself that I graduated from school on time. So yeah, I've had so many different health challenges along the way. But for me, it's really been a theme of chronic pain, brain fog, and just trying to figure out what is me versus what is the illness.

Right, right. And you have a lot of problems too with Lyme disease that you're not sure what's the illness, what's a Herx reaction, which is a, you know, the good-bad reaction is what I call it. And you don't know if you're feeling worse from the disease or the treatment or the damage done from the treatment. And it's just this big circular thinking that you can get stuck into really easy. But it sounds like you really had a fighter mentality to be able to finish school on time with a disease like this is absolutely commendable by no stretch of the imagination.

So I'm really lucky that my school was understanding. You know, I went to school in the Boston area, so a lot of my professors were familiar with Lyme and the damage it could do. In fact, one of my professors, his dad had Lyme, so he was like, he's like, whatever you need to do, you know, I'm, I'm here to help. So I was— I had a great supportive community with me at school who helped me to make sure that I could get everything done. Um, but for sure, you know, my friends were taking 5 classes, I was taking 3. Um, it just so happened that I came into school with some credit is really the saving grace that got me through.

Yeah, and so it just sounds like you've always had that fighting mentality, that it's not necessarily a physical act as much as it is a mindset, that we have to make those choices to sustain through these life struggles regardless of what disease it is or if it's disease or not. Just life sucks. I mean, come on, it can be real complicated.

So that's what— and that's exactly what I'm going through right now.

To take us to some of those aha moments where you decided that you were going to form this business nonprofit kind of structure where it's a business to work for the people, I guess so to say, is the best way to put it. Tell us, when did those decisions start happening?

Um, so as a backup, um, I've always been, you know, very entrepreneurial. I grew up in, um, a family of small business owners. Um, my dad owned a surf shop for 25 years in Rhode Island. Um, so I guess we've kind of always had that like cold weather, you know, I can do anything, push through it mentality.

Um, That New England fisherman, that, er, yeah.

You know, sometimes we would, you know, my dad would, he made surfboards for a living and sometimes he'd be traded, you know, surfboard repairs for fish.

Oh, cool.

So, you know, I've always been surrounded by figuring out ways to be scrappy and, you know, ingenuity, I guess, is the best way to put it. And then from there, when I had my first PICC line at 19, we had tried to avoid the PICC at all costs, but I wasn't keeping down medication by the time I got diagnosed. I was rapidly losing weight again. And then we had found through a SPECT scan that I had brain abnormalities in my left frontal lobe. So from there, we decided to go for the PICC line. For listeners who aren't familiar with them, you can think of it as like a long-term IV And when I first got that placed, I was like, what is this? I had never seen one before. The only time I had seen someone with an implanted medical device was family friends going through cancer. And I was like, well, I'm not a cancer patient, but I noticed that people started treating me like a sick person. Yeah. When they could physically see something was wrong with me. And my freshman year in college, I went from being super active, joined a sorority, way too many clubs, clubs and things like that. And then once I couldn't do all those quote unquote normal people things, I just, it really bothered me of how people started to treat me differently. So that helped to lay the seeds for Mightywell. But it was really when I had that first PICC line, I was told to wear a cut sock on my arm to protect the device. And I was like, this is crazy. Growing up in the surfing industry, I had learned all about sportswear fabric technology athletes. You know, think of your favorite Under Armour top that has, you know, moisture-wicking and antimicrobial properties in it that are really built for performance. And I've always thought of patients, you know, as athletes but in their own way. And I believe that we deserve to look and feel like people instead of, you know, a name on a chart or a diagnosis code. So that's what really like laid the the thinking behind MightyWell. And then fast forward, when I was in college, I made a prototype of our first product, the PICC Perfect, started winning pitch competitions all over the country. And even when we started with a PICC line protector, the vision had always been much grander, and the vision had always been to create a consumer-facing brand for patients and their loved ones that both provided them with clothing, content, and community. So that's what we're on our way to building. We've since launched 3 additional products which are in the chronic illness space. The whole category is being called adaptive wear, which targets people with chronic illnesses and disabilities. And we're really excited to help to change the narrative of what it means to be a patient.

I really like the backpack. I wish that would have been around or I would have known about it when I was going through IV treatment. Because that IV infusion backpack is incredible. That is the coolest design. It is. It would have been life-changing back then. Like, that's really cool.

Well, for anyone listening, um, you know, reach out. We have a brand ambassador program that helps to make the products, you know, affordable. Um, you know, I kind of looked at the market, um, and I was thinking, you know, there's a ton of medical supplies for— if you want to call it that, you know, that's already out there, but it's so crappy. You know, it's designed for functionality. It's not necessarily design with the patients living their lives in mind. And my degree, in addition to business, was around human-centered design and technology. So we tried to think of these as premium products that have all the bells and whistles as a place to start and to put our foot in the ground. And we're really excited to expand from there.

So you've been able to accomplish these pretty incredible things when— when struck down with this, you know, often debilitating disease, what have you— what have you found to be some strategies that you use? Or not so much treatment protocols, I don't really want to get into, you know, everyone's so different. Yeah, like, how about on a more personal level? Like, what helps motivate you to keep on doing this?

Really, it's been around meeting other people like you where I felt so crushingly alone for so many years because I didn't know anyone in my day-to-day life who outwardly looked normal but was going through a lot of health challenges. What's out there is you see the kids with cancer or you see the old people going through health challenges, but what about everyone else in between? And I just felt like we were so ignored. And the more and more people I talked to, like yourself, I was like, you know, there's millions of people who have such a close story to mine. You know, how can I use social entrepreneurship to help share my story, but really the story of the millions of other people that are out there too?

Yeah, it always amazes me how similar, regardless of the source of the struggle, that these stories all have similar common— they have commonalities throughout it entirely. Where you're going to have— it doesn't matter what, you know, a girl from New York and a girl from Mississippi, we've still gone through the same kind of struggles. And it's the same kind of— you have to make those choices in your life to get past the fighting point and start to decide to heal and make those conscious decisions and to buck against what your life has become, where you've gotten into the sickness and the repetitive darkness of it, and you've got to project and push yourself out of that. What are some of the choices you made personally that helped empower your ability to move forward in your own healing?

That's a great question. And, you know, um, I want to be completely like honest with people, you know, not every day is as easy as it looks on social media. Um, you know, like today I was challenged with a little bit of brain fog. So I was like, oh crap, you know, there's an interview at 7, you know, how am I going to do? Um, but you know, I've really tried to prioritize, you know, what's important in my life. Um, so for example, because I knew I was doing this, you know, at 7 o'clock my time, I decided to go into work, you know, an hour, hour and a half later today so I could make sure I had the energy to do something like this. Um, but I also grew up in a household where for better or for worse. You know, my mom's motto was always just walk it off.

We say walk it off, soldier.

Yeah, right.

Military family. Yep, drive on, soldier. You'll be fine. Just, you'll be good.

Exactly. So, you know, that's probably in part why it took so long to get diagnosed. But on the other hand, you know, I've had that fighter mentality since I was a little girl, and I've always just been instilled with that confidence to share my voice. So I am really grateful for that. And if even if people are not as willing to, you know, or afraid to do something like get on a podcast, you know, I always tell people start, you know, a spoonie Instagram account, you know, start a blog around your disease, you know, start volunteering with your local nonprofit for your disease case or disability. And that way you'll start to be pulled out of the darkness.

Yeah, that's exactly how mine started. My therapist actually told me I needed to to write a book. He was making the joke, you know, you need to write a book, you've got all these great stories, you're so charismatic, you need to write a book. And my negotiation was, well, how about a blog? I think I could handle a blog. I'm a real sick woman, okay? Yeah, a book is a little much for me. And I wrote my first story and then The Mighty published it and I was absolutely beside myself. And then the story after that, I actually gave him his nickname that he wanted on a plaque and actually said about how I, encouraged me just to write a blog. But you can do little things like you said, nonprofit stuff. I love getting involved with the nonprofit. There's tons of Lyme nonprofits specifically as well, especially with the holidays coming up. There's so many opportunities.

And there's even, you know, businesses that you can support that are doing charity tiebacks to Lyme, you know, right? The Global Lyme Alliance for our first ever nonprofit partnership where we did an exclusive shirt and PICC line cover. For them. And, you know, we donated a lot to their community members. So yeah, I mean, nonprofits are great, but you can also look at, you know, what companies can you become brand ambassadors for that are also supporting nonprofits and charities around health, healthcare, or, you know, whatever's interesting to you, right?

And then, so there was another interesting thing that people can do that you recently did. I saw your video asking Bernie Sanders questions.

I'm glad you saw that.

Oh, I totally geeked out over that. I was like, oh my God, I would love to have that opportunity. That's amazing. So that's another thing you can advocate on even a government level, which you've done quite a bit of. Would you like to tell us a little bit about what you've done on that level?

Sure. So in regards to that, I asked Bernie Sanders at a local campaign rally around what he was planning to do under— for Lyme disease under Medicare for All. You know, he's from Vermont. Grew up most of his life in, you know, between Brooklyn and New York. So it's definitely a disease I knew he would know about. He kind of skirted the issue a little bit and put it under the whole, this is why we need Medicare for All. But my point was, you know, if Lyme is not even recognized by the CDC past 30 days of antibiotics, you know, what is that good— what good is that going to do under Medicare for All?

Right, right.

So that was my quips, and, you know, I haven't made my decision yet for 2020, but, you know, it's my goal to go to as many different people as possible and ask them, you know, what are they doing for patients like us. I've also done other work around— I'm originally from Rhode Island, so I've helped to lobby for better access to funding for female entrepreneurs and small business owners in my state. You know, I kind of grew up in a politically energized family. You know, we were never politically involved, but, you know, we grew up always having, you know, MSNBC and CNBC on at night. So I've always just seen my voice not only as my own voice, but I have the ability to use my platform to speak for others, and that's always what's energized me.

Yeah, it's always fueled me to be able to help even one other person, and for you to be able to to reach it to the level that you have and still dealing with all of the struggles that people go through with health complications, it's really, I don't wanna say inspiring. I feel that gets overused a whole lot and I hate when people coin that onto me, but it makes you, okay, if she can do it, I could do it too. And people need to see that.

I always say you can't be what you can't see. See, right, or can't listen to, you know. So I think even initiatives like this, you know, it takes that grassroots level and people who are saying, I'm not going to sit there in silence anymore, right?

So I'm gonna throw a couple of rapid-fire questions at you because I know you got a lovely new hubby to get home to. If y'all haven't seen the pictures, you've done some, it was absolutely beautiful ceremonies. Where did y'all— where was the— I know y'all went out of the country for one, but I can't remember the name of the country right now.

So my husband's originally from Kuwait, so he grew up there, came to the US for college. His mom grew up in New Hampshire, so he actually had been familiar with Lyme. He spent his summers in New Hampshire. He grew up around horses. So when we started dating when I was 19, we didn't know why I was clumsy and brain fog and full all the time.

He used to call me gray Grace, just because it was just, we didn't know why it was clumsy and kind of a little goofy.

Grace, like Will and Grace?

Yeah.

Oh, I love her. That's like my go-to show at night. But yeah, so we were dating before we knew what was up. And then when I had gotten the diagnosis between my freshman and sophomore year in college, I sat him down when we got back to school and I was like, hey, listen, I'm gonna get really sick, you know, explained what a Herx reaction was. I was like, this is your out. And he was like, nope, I'm not going anywhere. And you know, when I was at my sickest, when I was 20 and 21, you know, he was bringing me chicken soup from the grocery store. He was coming to doctor's appointments like this. You know, my parents were like, okay, like, he really will love you in sickness and in health. So, right. You know, even though on paper we probably shouldn't work, but, you know, he is my best friend, and I could not do my company, my health, like anything I do without him. He's the silent champion in the corner.

You always need somebody behind you supporting you like that. Behind— it doesn't matter who it is, across what platform it is, if there is a forefront person, there is somebody behind them that is the unsung hero. There always is.

Absolutely. And we have another amazing co-founder. Her name's Maria. We also met in college, and like you said, she was there kind of before we knew why I was such a weirdo. And then those are the best friends. Yeah. So, and her aunt who lived next door to her had Crohn's and had a PICC line. So Maria has also been quite the caregiver to myself and And I also encourage anyone who's starting a nonprofit or a company or really any venture to try and find co-founders as early as possible because it takes a village.

It really— especially with a nonprofit. My dad ran abused and neglected children's nonprofit, Homes for Abused and Neglected Children, the whole time growing up. And now I work with Lyme Warrior, the nonprofit. If you work in the nonprofit sector, it is— you are married. Married to that nonprofit. You eat, sleep, and breathe it. And so to have other people come on is massive. It really is. You can't— it's a burden you can't bear alone in any fashion at all.

Yeah, no, I completely agree. You know, startup is definitely 24/7. There's— I strangely look forward to my infusions because it is the on myself and my health.

Yeah, and that's really important to have that time that you can recharge yourself and do that self-care stuff to just kind of take care of your own sanity and your own body as well. So on those lines, where are you getting your inspiration from lately? Like, what books are you reading, TED Talks, podcasts, any of those things?

So I am a little bit of a nerd. I love documentaries. I listen to my favorite podcast, it's called Freakonomics Radio, which is—

oh, I love that one!

Same people who wrote the books. So that is like usually my go-to when I'm like, huh, like why does the world work this way? But you know, I'm— I do— I did recently download the new book by Chris Newby about Lyme, Bitten. Yeah. So that has definitely caused like a little bit of like medical PTSD listening to it.

It's hard. It is hard to—

it—

because I did it and I had to break it up because it was very— and I don't want to say triggering because it's such a word that's overused, but it did. It triggered those, oh gosh, I can remember what this is like, and infuriating moments that I was ready to burn down villages. I was so mad at some of that stuff.

Oh, sure. And like, I've— since I'm listening to the Audible right now, so, you know, I have about an hour and a half left. I need to revisit that book. But then I've also just been, you know, trying to listen to as many like self-guided meditations and like positive, you know, joy of living type books. Books because when I am having those hard days, reminding myself, you know, tips and tools is something that I've been working on in my free time.

Yeah, I think it's a constant battle with, even with myself. I know that meditation helps me. I know that these self-help books help me, but making myself sit down and carve out that time just to do that is It's almost impossible.

Like you need a full-time job just to focus on your health.

Yeah. I need a secretary to take care of all of this other stuff so I can just meditate for 30 minutes and then I'll be good.

And I've been trying to make little switches, like instead of watching Will Grace to fall asleep, I've been listening to a book right now called The Joy of Living, which is written by a Tibetan monk. You know, it's like how to go into the dark corners of your mind and everything. So it's just making small switches like that that I'm trying to implement. You know, sometimes it's easier said than done, but—

Oh yeah, very much so.

At least we're trying, right, Jess?

Yeah, at least we're trying. We get points. We get points. Exactly. So what have you gained from this journey? What I often say to my friends and in writings and things that I love my life, but I would never wish it on anybody. So because I've gained so much from it, I mean, I don't think I'd be the person I am today with the mentality and the convictions I have today if I had not gone through this. So what's some examples like of that in your life?

I always just tell people it's been a blessing in disguise, you know. I, you know, since listening to Bitten, what we were just talking about I'm like having these flashback moments. I'm like, oh my God, did I just step like half an inch too far in the grass? And like, that's where a tick bit me or, you know, those kind of moments. It's just like, you can't live that way. You can't. No, you can't. So really just trying whenever I find my mind going that way, taking a step back and saying like, okay, like the reason I'm doing this is to not only help myself but to help others turn sickness into strength. You know, I know that I'm such a type A, you know, vocal leader that if I didn't use my voice and my story to help others, I don't know if I could live with myself.

I think I'd drive myself insane.

I would drive myself insane. And it's meeting other people like you and your team that I'm like, okay, I'm not alone. I have to keep fighting. Maybe I need to take a day off. You know, 2 days later I'll come back.

Right, right.

Giving yourself that space when you are feeling overwhelmed or like when health does have to come first is really important.

Right. And the goal, of course, throughout it all is just to live and to actually get to that point where you can speak your truth, you can reach those people you need to reach, you can go to those political events and shake those hands and kiss those babies and what have you to make change. So give me some examples of some joyful life moments that you're looking forward to that it's not work-related. That's always the one I'm like, oh God. Yeah. What?

So on a personal level, I mean, I just got married. I had two weddings. So that was like a big deal. We did one in Kuwait, one in my hometown in Rhode Island. So that was probably the biggest thing I've been looking forward to. And then just because my work schedule, we can't do like a long two-week honeymoon, but We are going to go to Costa Rica for a few days over my birthday. So we've just been doing like all these little trips. And for the most part, we've tacked them on to work trips. But this is going to be the first trip, just the two of us in 4 years that has nothing to do with work and everything to do with relaxing. So—

Oh, that would be amazing. Enjoy that. Wow. So what's some— Okay. So as soon as I said not to do with work, you had the same cringe face that I would if someone asked it to me. I've joked before that all of my hobbies are just work side projects.

So give us one that you're looking forward to as far as work stuff goes. So work. So we just had one of our— two of our brand ambassadors walk in New York Fashion Week, and one of them was the Tube Fed Wife, or excuse me, not the Tube Fed Wife, brain fog.

Mellie White.

Yeah, Mellie, who's the girl who can't eat. She wore our backpack down New York Fashion Week. So that was last week. I'm still reeling over that. But then, yeah, for any listeners who are in New York City, we're working on putting together our yearly photo shoot where in all of our marketing materials we only use other patients and then we go ahead and tell their voices and their stories on our site. So yeah, we have another big shoot coming up and if anyone who's listening wants to get involved in that or any meetups that we're doing, shoot me a note. It's just @MightyWellEmily.

Awesome. Thank you so much, Emily. I have had an absolute blast talking with you tonight, and it has been an ultimate pleasure.

Well, thank you, Jess and team. I feel like I could probably talk to you for another few hours.

Easily, easily.

It's just really nice to know that there's others in the Lyme world who are taking a stand and, you know, saying we're not going to be silent anymore. The more— that's the thing that drives me insane when people say chronic Lyme isn't real or long-term Lyme or whatever the clinic or the term of the day is.

Right.

Yeah. I always say, look at me. Look at the people who share their stories on MightyWell.com. Look at all the people who are doing amazing things like this podcast. We're going through something, so it's not just us. And I think the more that we share our stories you know, eventually they will have to listen, right?

It's the exact same way that any kind of changes happen. People don't want you to shake what they believe is going on, right? You have to be to the point where they can't not hear you.

Exactly.

That there's no other option.

Well, I'm so glad to know that I have another friend in the fight who—

so many. Well, so many.

You know, you've told your story to our community. You know, we're certainly going to share that this. Um, and please let me know. You know, I'm, I'm in the phone— I'm in the car way too much, so always available by phone on those long car rides.

Okay, and if you want to let any of our listeners find you at— and we will include any links or anything like that in our show notes as well. And thank you so much for being my first guest. This was absolutely amazing.

Well, I'm so glad that, um, This has actually been the highlight of my day. It's been the first time I'm taking a pause. So people can find me at @mightywell_emily on Instagram, or you can shoot me an email, which is just emily@mightywell.com. And I always try to get back to people relatively soon. But if you don't hear me, chances are it's a flare-up day, which most of our audience will definitely understand. Good.

Okay, well, thank you, Emily.

Hi guys, I want to let you know about a book I wrote called Little Bite, Big Trouble, and I'm going to read a review that recently came in. This is from Carolyn, and she says, thank you so much for writing your book. It has become the means by which I have explained Lyme to my 4-year-olds. They asked for it to be read as a bedtime bedtime story over and over again and love that the mama birdie does yoga and juicing like their mommy. I can't thank you enough for writing this book. It has helped my family so much. You can find it today at amazon.com. Little Bite, Big Trouble. Disease is contrary to life. Therefore, wherever disease As long as Lyme disease exists, Lyme must also fight to exist.

Good job fighting, Lyme fighters. Keep it up. We'll see you next time. LymeVoice contains general information about medical conditions and treatments. The information is not advice and should not be treated as such. Okay, Lincoln? Okay. The medical information on LymeVoice is provided as is without any representations, warranties, expressed or implied.

Okay?

Okay.

Okay, Lion Voice makes no representations or warranties in relation to the medical information on this podcast. You must not rely on the information on this podcast as an alternative to medical advice from your doctor or other professional healthcare provider. If you have any specific questions about your medical matter, you should consult your doctor or other professional healthcare provider. And for you, you consult your parents, okay?

Okay.

If you think you may be suffering from any medical condition, you should seek immediate medical attention. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this podcast. Got it, Lincoln?

Got it.