Love to Breathe and Find Gratitude In Life with Somer Love
7 Oct 2020 · 45 min
In this episode of the True Grit & Grace podcast, host Amberly Lago introduces the show and promotes the upcoming Event Planner Expo 2020 before welcoming longtime friend and cystic fibrosis (CF) advocate Somer (Summer) Love. Somer shares her personal CF journey—from a near‑fatal diagnosis as an infant to celebrating her 41st birthday—explaining how her family’s early celebrations shaped her outlook. She describes founding the Love to Breathe community in 2001, its evolution from a supportive blog to fundraising art projects, the creation of Love to Breathe tokens in 2014, and the global reach of the tokens (over 10,000 in 70+ countries). The conversation moves to practical coping strategies: daily gratitude journaling, mindfulness, yoga (the BEAM virtual program), walking with oxygen support, and the importance of community—both the long‑standing CF network and newer virtual gatherings like BreatheCon. They discuss the challenges of mask‑wearing, oxygen therapy, and heightened vulnerability during COVID‑19, noting how the pandemic reinforced the need for careful hygiene and adaptive social interaction. Both hosts explore resilience, defining it as "showing up" and reframing obstacles into opportunities, emphasizing perspective shifts, gratitude, and mantras. The episode closes with resources for Love to Breathe (lovetobreathe.com, Instagram) and calls to action for listeners to join Amberly’s newsletter, download a gratitude journal, and explore her books and membership.
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Welcome to True Grit and Grace, a podcast designed to empower you to claim your resilience and thrive through life's challenges. I am Amberly Lago, a mindset coach, fitness expert and bestselling author. Each week, I'll dive deep with the world's brightest thought leaders and elite performers to share tangible tools and practical advice to inspire you to keep your eyes on the prize and forge ahead. So get ready to conquer your fears, heal any trauma, lead with your heart, and elevate your life with grit and grace. Thank you so much for being here. So many of us, so many people out there right now are so focused on surviving right now, just getting through each day. But you know what? It is possible to thrive even during the most challenging times. And if you listen to the show, you know, I talk a lot about resilience and innovation and the importance of community. And I'm constantly doing my best to bring you as many resources as I can to not just inspire you, but to give you the knowledge you need to really continue to grow and be the best version of yourself. And that's why I wanted to tell you about the Event Planner Expo 2020. I'll be speaking at this event in October. It's October 13th through the 15th. So it's right around the corner. And y'all, this is the number one trade show and this year it's a virtual event and it's not just like some prerecorded event. This will be live with some amazing speakers. I mean, I feel really honored. They have Daymond John and Kevin Harrington from Shark Tank, and Heather Monahan is one of the speakers. She was actually a guest on the show right here on the True Grit and Grace podcast. So there's going to be a ton of speakers, breakout sessions so you can network with other people. And it's really this year about building community, bringing thought leaders together, to share knowledge, insight, strategies, and provide value so you can continue to thrive, build your business, and build your network. So I'll be sharing tools on how to strengthen your resilience, grit, mindset hacks to get you through life's toughest challenges. And I would really love to see you there. It would be great to see a familiar face. There's going to be so much shared here. So whether it's learning how to adjust and adapt or grow your business or your network, or if you just want to learn some sales and marketing techniques, this and so much more will be shared. So grab your complimentary 3-day VIP ticket. Now you can come for all 3 days or you can come for 1 day. I hope you'll come when I'm there. Again, grab your free ticket. It's at theeventplannerexpo2020.com. Evenbright.com and use the promo code Amberly, A-M-B-E-R-L-Y, and I hope to see you there.
Hi there and welcome to the show. I'm Amberly Lago and I'm so happy that you're here because I have one of my dear friends with us today, Sommer Love. She is a good friend of mine. She's a warrior. She is a miracle, a living miracle, and a leader in love and kindness and the founder of Love to Breathe. She was diagnosed with cystic fibrosis as an infant and not only fought the odds of living past her 10th birthday, but just celebrated her 41st birthday. She's passionate about spreading love, raising awareness whenever and wherever she can, and she is a highly respected advocate. And I— you're a hero in the CF world and in my life. Every time I get to talk with you, I just feel happier. You shift my perspective and I feel more at peace. So I'm so glad to have you here. Thank you so much for being on the show.
You're welcome. Well, thanks for having me. I'm excited to be here. And golly, I was like, I'm getting a little like verklempt. Like I was getting all teary-eyed during that introduction. So thank you very much. I hope I don't disappoint.
Oh, you know what? I honestly was going to say, I hope I can get through the interview without getting teary-eyed because even when I read one of your posts, on Instagram. You have such a way with your words and a way with saying things that it really does shift my perspective. And you know what? I'm just going to read something that you posted.
Okay.
You had written, don't cross oceans for people who won't— wouldn't cross a puddle for you. And you crossed that out and said, no, do it. Do cross oceans for people. Love people, all people, no conditions attached. No wondering whether or not they're worthy. Cross oceans, climb mountains, live and love isn't about what you gain, it's about what you give.
Right.
And you give so much, even though there are so many times when you're struggling yourself, you give so much. And so thank you for all that you contribute to my life and to so many other people's lives. I've known you for a while now. We actually met Through Instagram.
Right.
And I remember you sent me a DM, said, I'd love to send you something. And I was like, oh, who's this really nice lady who wants to send me something? And you sent me your love tokens.
Yeah.
I wanted you to tell everybody a little bit about you and your journey and how you even started with handing out love tokens and, and your foundation. So can you tell everybody a little bit about you?
Yeah, so my name is Summer Love and I am 41 years old and I am very proud of my age. So when I was diagnosed 17 days before I turned 1, you know, the doctors told my parents, you know, she might not make it to 10. And so we've always just celebrated life to the fullest and they are— I bet they're kicking themselves, my parents, because my first birthday was a huge celebration and like We always go out for every birthday. And so I'm sure they're like, what did we start? But hey, I mean, it's worth it. And birthdays are really special to me. Every day is honestly really special to me. And I do have to back up. So the post that you're talking about, the one where I was like, do cross oceans. So I actually can't take credit for that. I found that and I saw that. And I mean, I can take credit for the caption I wrote underneath it, but not that, like, not that post, but it was just so powerful to me. And I post it often because it's true. Like, If you can change somebody's life for the better, why would you not? I mean, that is just like, it's as simple as that. And just be kind. The world needs more love in the world. And so I just try to spread it. And I started, so I started Love to Breathe back in 2001. And at first it was just a way to be a positive voice in the CF community because, you know, there's a lot of unknowns with cystic fibrosis. There is no cure. And they're like, when my parents found out, they had no idea what it was. They've never heard of it. And the internet is a scary place. And so when you are researching things, it can be scary and a little daunting. So I wanted there to be a place where there is a positive message for adults, like adults with CF and parents of newly diagnosed children, is where it really started.
Yeah.
And so I wanted like these parents, like they get their the diagnosis, hardest day of their lives, and then they immediately probably go on the internet and there's some scary stuff. So I was like, let Love to Breathe be a positive message and let them see an adult living with CF and thriving despite all the hardships that CF does bring. And so that's kind of how it all started. And I am an artist, and so I started sending my paintings around to fundraisers around the US just to help raise awareness and funds for cystic fibrosis because Cystic fibrosis is considered an orphan disease. And so there is 30,000 in the US that have it, 70,000 worldwide. So it's not government funded. And so everything, you know, research is funded by private donations. And so that's why I was like, well, let me do my part by sending these paintings, right? And then it just evolved and things happened. And I started a blog like way back when, when blogs, you know, like when they first came out and just just positive messaging and awareness. That's kind of where it started. And then 2014, I started my Love to Breathe tokens. And I wanted— and the reason why I started those actually started because on Thanksgiving that year, stores were open. And I was like, oh my gosh, like, why? Why can't we just have a day where we just like give thanks and, you know, celebrate our lives and sit around like a table with our loved ones and not rush out to get things that people really don't need. Or, you know, and I just like was really frustrated with like, just the, just, I guess the, I don't even know the word I'm looking for. But I was just frustrated with like what, like the holiday season has become, I guess, you know, with—
Like just a big production and selling, you know, let me, you gotta shop it. And the fast The fast-paced life of just, you know, it can be like you're on this hamster wheel. And, you know, Ruby and I were at the store the other day and they actually already had Christmas stuff up and it's September. And I'm like, oh my gosh, slow down. So yeah, Halloween and Thanksgiving are a couple of my favorite holidays because there's usually time to just have fun and, or give thanks and—
Be present. And, you know, I think presence— that's always say, like, I'll give you my presence with a CE, not a TS. So it's like, and that's kind of where the tokens came in because I was like, how can I spread love yet still spread CF awareness at the same time and just make it something simple for everybody? And so just try to spread them around the world. And there is over 10,000 in circulation and they're in like over 70 countries. So it's working and it's happening.
And I was gonna ask you how many countries that you're tokens are in?
They're in, uh, 70 right now, I think. So they're, you know, it's working and, and it is really great. And it's just such a fun, um, you know, movement for me to like be able to be a part of. And like the messages and the, you know, the emails that I get when people find one or whatever is there, it's just so important to me and it means the world to me. So, so it's been really fun, a really fun project. I've, I've actually this year with COVID and everything, I've taken a step back with that and just, you know, waiting until it's safe again to start it back up. But we're getting there. Baby steps, right? I mean, speaking of slowing down, I mean, this year has really let everybody, you know, slow down. And I think if anything good comes out from this, it's like this— the chance to like take a step back and like realize what's important again and, you know, slow down and just take one day at a time. And I think with chronic illness, we're all really good at that, right?
Yeah. You know, I feel like— I think we had talked not long ago we were talking about how chronic illness has prepared ones who have been diagnosed with some sort of chronic illness for times like COVID. And, you know, there were many times when I already had my world turned upside down and I already had, you know, days where I couldn't go out, you know, stuck in a hospital bed. And, and I learned a lot about— I didn't know as much about cystic fibrosis until I met you. And then when we met in person for the first time when I was in Salt Lake City, and y'all, I just have to tell you, you're the real deal. I mean, you are like the sweetest, most genuine person. So I get to Salt Lake and I am so nervous because I'm about to do this big speaking event with Mel Robbins was there, Jay Shetty, Lewis Howes, Brendon Burchard, and then there was me. And it was kind of a last-minute thing and I had packed up quickly and just trying to figure out what I was going to wear. And I get there and I realized I forgot toothpaste. I forgot deodorant. Like I forgot a lot of the, like, and I was sweating already thinking about it. So there you come to meet me in the hotel lobby and you were like, You know, do you need anything? Do you? And I was like, actually I do. I need to go to the store. And you drove me to our big night out was you took me to the store so I could get like some essentials, some deodorant. And I learned just a lot more just by that experience with you right now. You know, my car has alcohol wipes, Clorox bleach wipes, hand sanitizer, hand spray. We've got masks.
Yeah.
When I drove with you to that store, you already had hand sanitizer. You know, you have to wear a mask, you know, if you're in certain situations. And so it's like your whole life has prepared you for this time in COVID. And you did a post the other day about wearing a mask, and it really helps to shift people's perspectives on when we get caught up in, oh, I have to wear a mask, or, oh, this is such a downer. I'm, you know, and I thought about you actually the other day because we've got fires going on here and, you know, our gyms are still closed. In LA, it's pretty locked down. Our gyms are closed still. We've made like a little workout area in our garage, but we couldn't really work out because the air was so smoky. And I was like, oh, I feel like I can't breathe and I feel like I'm suffocated and I started getting claustrophobic. Now, how do you, or do you have moments where you feel like trapped or stuck? And if you do, how do you get through that?
Yeah, so, well, so I have worn masks all my life and it's something that I've always had to do to protect myself and I was going through some pictures the other day and like I was seeing a picture from 2 years ago where there were fires here in Utah really bad and the, you know, the smoke was bad, just like it is right now from all the wildfires. And I was at a concert and I was wearing a mask and I just remember I was like, you know, I was a little self-conscious because I was the only one in a mask and everyone was just staring at me. So now to see like that, like be a part of everyday life for everybody else is It's pretty wild and it feels like I'm living in this like upside-down world. Uh, so I, I don't know if people are like watching our video when, when this happens or if they're just listening, but I am on full-time oxygen. I don't have it on right now because I have been blessed to be on this medication that has allowed me to take a deeper breath than I have in a very long time.
That's amazing.
Yeah, and some days, depending on the day, at rest, I can be without my oxygen, and it's so nice and such a great break right now, especially in the season that we're in. So, but it is hard. I have about 30% of my lungs left, and, you know, and it is hard to breathe, and it's hard to breathe with a mask on. But I do it, and I do it because it protects my lungs. But now I love that when I do it, I'm actually protecting others. So that's like, it's for— it's just part of the greater good, right? Like, we can all just like, you know, do that and like, we'll all be able to get on with life again, which, which needs to happen because this isn't sustainable. So yeah. I mean, it's not easy. And I don't know if like people have seen the movie Five Feet Apart, but with cystic fibrosis, we can't be around others with cystic fibrosis. So this is how We've, you know, grown up and lived our lives without being— like, not being with each other. And when we do get together, we have to stay 6 feet apart and we have to wear masks and we have to, you know, sanitize. And so it is like I'm living in— like, it's like the world has CF right now and it's just so bizarre. So it is definitely—
Yeah, I didn't know that until I met with you in Salt Lake. And I was— we got to talking about how I had just I had just given a talk for RSDSA, which is for support for CRPS, which is the disease I was diagnosed with. And I was sharing with you about how I'd given this big talk and there I was getting in, giving the talk. And I'd asked people who ever had CRPS to raise their hand and like 90% of the room raised their hand. And I just started crying right there in front of everybody because it's the first time I had ever been around that many other people. that were just like me, that like understood what it was like to live with CRPS every day. And you said, wow, you're really lucky. And I was like, I am lucky because you guys have to stay 6 feet apart. You could never have a big conference for CF.
We have BreatheCon virtually, which is our conference. And we've—
Virtually though, right?
Yeah, virtually. But before even, like, I feel like this year everyone turned virtual, but the CF community has been doing this all along, right? So it's just—
Yeah, like, it's like we are learning from you how to do things.
Yeah, I don't know. It's, it is pretty just, it is like I'm living in this upside-down world. But, but yeah, so, but being stuck like in, you know, in the situations where like, like, well, I think today's like 193 for me. Like, I've been living this quarantine life because If I caught COVID, it would be very detrimental.
Oh yeah.
I got, I got, um, really sick in January with a virus, and it took me down, and it took me down really hard. And, you know, I was on 8 to 9 liters of oxygen just to sit in my hospital bed, and it was bad. And so I, like, I can't imagine if I were to catch COVID So I had to be super careful. And, um, you know, I haven't gone anywhere. I finally went and got labs done, and I just was like, I was like, Like I saw somebody and was like, oh my gosh, hi. Like, I was like talking their ear off. The poor phlebotomist was like, probably like, oh my gosh. It's been an interesting season and people like, oh, this is just easy for you. I'm like, no, it's not. I'm like, this isn't easy for anybody. We're all, you know, going through this storm differently, but like, it's just like we're all not in the same boat, right? So we're all in the same storm, but not in the same boat. And I think We're all just trying to get to the end of the day and however that looks like, whatever it may, whatever you do to take, make it happen, that's what you gotta do. And so it's definitely been eye-opening in a lot of different places, but—
Well, and it's different too, I think connecting through Zoom versus, and thank God for Zoom, versus connecting in person. There's just a difference. In fact, it's actually harder to— because a lot of my talks and my speeches have been changed to virtual. And I have been so nervous because I have one coming up and it's a webinar and I have to do— I'm doing like a slideshow presentation. And so it looks like I'm basically talking to myself.
Yeah.
And that is like the scariest thing for me. Well, technology and then like I'm talking to myself on a video. Oh my gosh. I've been terrified. But my husband was like, you made it through 34 surgeries. I think you can do this. And I think, okay, putting it in perspective. And you really have a gift for shifting things and putting things in perspective. What are some of the things that you do when you start kind of getting into a place where you're down or feeling kind of blue? What are some of the Do you have any like tricks or mindset hacks that you use?
I do. So I, you know, I always, I am a very positive person and I do try to like always find the good in every day. I mean, some days are real crap. I mean, crap, but I don't know. I'll just go with that. But some days are hard and, you know, it doesn't matter like how hard that day is, even if it is like, I mean, the hardest day in your life, if you look closely, you will see, you will find the good. I mean, sometimes you just have to look a little harder, but it's there. And I think gratitude really, really, really helps me as well. And something I started doing a little over a year ago now is at the end of every day, I write down 3 things that I'm grateful for. And it can be like The smallest thing, like, you know, I don't know, a bowl of ice cream. Like, it just is something that you're just like, made you smile and that you're grateful for. And, and that's what I've been doing. And it's, it's helped a lot. It really has. And so, I mean, there's just the little things really in life that are just the big things. So like that bowl of ice cream, or I got a quarantine puppy. So like, she makes me laugh every day.
So cute.
Thank you. Yeah, she makes me laugh. And I think, you know, she's a— she's been a big part of my like gratitude journal this last, what, 6 months that we've been together. Like, she always makes it to that top 3 list because like she'd— every day she's just making me smile. So it's just whatever it is that's making you smile, I think, is just really be grateful for that and like focus on that and it really will help shift your mindset. But gratitude, I think, would be would be my answer of like how I, you know, stay positive. But, but I mean, there are hard days and it's okay to have hard days. Like, people are always like, oh, you know, you gotta, you gotta be happy all the time. But you don't. You, I mean, you gotta feel all the emotions. But on those, those harder emotions, you have to feel them, you have to get through them, but you can't stay there. Because if you stay there, that's kind of where things start to shift and it could It can be hard to get up and out of that. So I think just, yeah, look for the good.
Yeah, I always say hunt the good because it is there. Like, count your blessings. And, and we do the same over here. Well, I actually start my day with a gratitude list and I have an accountability partner. And so we will text each other every morning I mean, every morning, we have not missed a morning, 3 things that we're grateful for. And then at night when we're going to bed, we have a gratitude jar and we put a little list in our gratitude jar. And so on days when I'm feeling kind of down, I can always dip in there and look at things that I'm grateful for. But I always talk to Ruby, my 12-year-old, and I'm like, OK, what was the best part of your day? And what is one thing that you're grateful for? And she comes up with some crazy stuff. Like she'll say, I'm grateful that I was twerking today, or like something. But you know what, at least it gets her—
In her unicorn onesie.
She lives in that thing. Yes, we have actually been able to have some, some fun. And I think that if I can share, get her in the habit of focusing on gratitude, it will start to become a part of her life and help her immediately try to find the good in this situation. And I love that you say feel the feels and move through those feelings. Like, you can't just stuff it down. You have to allow those feelings to rise up, feel them, and then move through them.
Tears are so cathartic. So like, I never used to be a crier. And then I don't know, I turned 40 and I was like just crying all the time. I was like, maybe this is what 40 is. I don't know. But I just was like, Crying so much. And I was like, I was like, this actually is helpful. Like, it's good to get these tears out. So yeah, cry. Like, cry.
It's good that you're sharing that.
Yeah.
Because growing up, I was taught not to cry. Like, it was not okay to cry. And then when I finally would, like, cry, I was made fun of. So for years, I never cried. And now I cry. I cry reading your posts. This morning I was crying reading your posts on Instagram. My husband, man, my poor youngest daughter, she's probably going to need some therapy because I'm always like, cry, girl. Let it out. Let it out. And my husband is, you know, retired Lieutenant Commander. And he's like, why are you crying? What are you crying about? Stop crying. You know? And I'm like, she's got this mix.
I do.
What's going on? But that gratitude really does work. In fact, I shared that on my interview on the Today Show with Megyn Kelly, and Megyn Kelly goes, that gratitude thing, that really works. Everybody says that works. It really works. And I'm like, yeah, it really works. It's the quickest way to shift your perspective.
Right.
For sure. One of the things that I know when you were younger, you had such a support system with your, with your parents that really did everything they could to be a part of the CF community and then also do fundraisers and contribute however they could. Then also, I know that you stayed active and healthy. Are you still staying active right now?
I am, yes. So I have started walking outside, which has been really nice. Just this year, like, I started doing that. Like I said, with this new medication, you know, things are changing. And so I want to, like, I want to give it the chance to work and see if it will— if I can get my lungs stronger and stronger. And by, you know, exercise is really important for people with CF. So I've always, I've always worked out and been active and exercised, but I feel like I've taken it to another level This year, and I started yoga, which has been like so fun too for me. I've like had this hidden yogi inside of me that I didn't realize. And so there is a program for people with CF virtually called BEAM, and it's been really great.
It's called what?
Is it called? It's called BEAM, B-E-A-M. And so they, uh, it's a virtual platform where they have live classes and on-demand classes. And so when I got really sick in January, I was doing everything in my power to heal and get stronger, you know, and hopefully lessen my oxygen use and like be able to, you know, just heal from the virus that I got. One of the co-founders like had reached out to me and was like, you need to come try yoga and we'll see if it will help get you stronger and strengthen and like help you, you know, breathe deeper.
Wow.
And I'm so grateful and indebted to her because I took a chance because I was like, oh, I don't know. And then I finally just took a chance and did it. And I've really, really loved it. And, and I feel like she, like, pushed me to, like, even love, like, exercising again, which, which it's been really hard because, you know, there's been, like, triple-digit temperatures here and it's so hot and I don't do good in the heat. And so I haven't been able to get outside. And I really like the last couple of days. It's been cooler and clearer because of the windstorm we had. So the smoke's been cleared out. And so it's been so great to, like, just get out and walk. And, you know, when I, when I do exercise, I'm on 5 liters of oxygen and have to carry a big backpack with a tank in it. But it's just, it's just great because I know, like, in the long run, I'm really, you know, strengthening my lungs so, so I can live longer. That's like, that's my goal in life is just to live as long as possible.
So yeah, and, you know, I mean, whoever's listening to this and they're like, I don't really feel like walking, I'm like, They may not have to strap a tank of oxygen on their back to go for a walk. I mean, there are times for me when I get— there's a little trail near our house and sometimes I get to the bottom of that hill and I'm like, I just don't feel like doing this mountain today. And then I think, no, I get to do this. There was a long time when I couldn't. I was stuck in a hospital bed and I couldn't do that. And so I always say, I get to do this. And so, but here, you know, like I said, the gyms have been closed. It's been smoky outside. I was talking to my mom and I said, Mom, I'm going to be mental if I don't get to work out. Like, she goes, I know you will. And she said, she goes, ever since you were a little girl, you have, that's been your thing. Like, that's your outlet.
Yeah.
And it's really, for me, mentally, I think moving your body moves your mind. So I just bought one of those Peloton bikes.
Oh, nice.
Yeah, I was like, I am just gonna go do— I'm gonna do it because I need to have some way if, you know, and then, you know, I love that my daughter's school, they're doing virtual learning and they were doing yoga for PE. And so she was doing yoga and I thought, well, I'm gonna do this with her. So I started doing yoga with her PE class yesterday. And I do, you've inspired me to incorporate more yoga. into my life because I think that does allow you to be in the moment, focus on your breath. Yeah. And, and which is really— get grounded.
Yeah.
Yeah. It's not easy to like when you can't breathe, focusing on your breath is not an easy thing. And they just started this 4-week program for people with advanced lung disease. And it was so nice to be in this class with other people that are experiencing the same thing as me. So like, we're just working on posture right now. And just like, just sitting up straight is—
You made me sit up straight.
Just sitting up straight is— was actually like really painful for me, like in my back area. And just, and it just almost felt like, you know, when you get a side ache or something. But it almost felt like that. But it was just like a backache. And I've always experienced that when I like sit straight up. And I, and I didn't really know that it was because, because my lungs, you know, it's like—
Oh.
So it was nice to like know that like everything that I was experiencing was like perfectly imperfect, right? Like it just was like part of, part of the thing with advanced lung disease. And so it was, it was an interesting— it was a, yeah, it was just a really interesting take and like hearing other people experiencing those same things. And I just was like, okay, this is the This is my normal. This is normal for me then. Okay. Like, so if I can just, you know, strengthen those, those muscles that are around my lungs, I think it will be helpful in the long run.
Well, I want to just highlight what you talked about is a community where you feel like people understand you. There, there is like when you can connect with other people who are going through something similar. It, it, for me, it's like, oh, I can, I can exhale. I can go, oh, everything's going to be okay. Well, this is like, they feel the same way. They understand how it is to go through these things. Whereas other people, I remember a few years back, I worked one-on-one with a yoga teacher. And she goes, okay, we're going to do some simple things. You're going to stand up. And she goes, now spread your toes. And I was like, my toes don't, they don't spread. And she goes, no, just spread them. And I'm like, she didn't understand that with CRPS, when you have it in a limb, it can shorten the tendons and everything. And I was like, they don't move. Those are paralyzed.
Yeah.
So I know when I'm with, even go for a walk with someone who has CRPS and they understand that I can't stand in one spot for a long time, or I can only hike for a certain amount of time. They totally get that. It makes all the difference.
Right.
And so I think it's really important to connect with a community who understands. And for me, it's really important to have a community that is positive and passionate and inspired, and they want to improve, and they don't focus just on the negative. I mean, you see, you acknowledge maybe some hard things, but you're like, you like, okay, but how can we move past that? How do you build— do you have a— I mean, I know you have a huge CF community, but do you have like a smaller support group, or how do you build your community that's, you know, a positive experience for you?
Yeah, so I think Well, the CF community just in general is so amazing, and we all like really rally around each other. And, you know, we do things and we try to galvanize each other. And just like, just, I just feel like we're— I can't quite explain it, but I, you know, I just feel like we're so supportive of one another. And it really is just like a breath of fresh air to, you know, talk to somebody that Guess what you're going through. And like, I'm sure you would agree, it's just nice to— you don't have to limit like what you're saying or what you're doing, right? Like, so when you're in person with somebody with CRPS, like, you— they know that you can't stand, or they, you know, for a very long time, and they know, like, but you don't have to like explain it. It's just like something that's like automatically—
It's a knowing. Yeah.
So even like my support system, you know, here, Like, they know that I have to be careful around germs and stuff. So it's like, it's so refreshing. Like, if when I have someone come— like, I mean, I haven't since COVID but like when someone would come over to my house, like, and they just know immediately walk to the kitchen sink, wash their hands. Like, I don't even have to say anything. And it's take their shoes off, you know, it's like all automatic stuff. And it's so nice when people just get it and like you don't have to say those things. Because when you're saying those things like, oh, do you mind washing your hands? Or Oh, can you take your shoes off? Like, it makes you feel like different in a way that you don't want. You want to— you don't want to feel like that, like, or like a burden, right? And so it's so nice when people just, just get it and like can make things a little bit easier on you.
Oh, it's— yeah, I mean, I get it on a different level. I mean, I, you know, I get— this is so crazy and it's kind of hard to admit, but I actually feel almost like it's It's the ego and the pride in me because I was so strong and I was like the fastest runner and held the state record in Texas for the mile. And so I had all this ego about, I can do anything. I'm just going to work harder. And it was hard when it was like, oh no, I actually can't do a lot of things because—
Yeah.
I tried and tried and it would just end up with the same result. And it's hard sometimes for me to have to admit to somebody, even close friends who've known me for a while, but they don't understand CRPS. And I don't expect them to understand everything about CRPS, but I find it's, it's, it's hard when I have to admit, oh, I can't do that because I, I, there's no way I can stand up that long. You know, like a friend wanted me to go to a concert and they were like, pit seating where you're not seating but standing, like you would have to stand up for the whole concert. And I was like, there, I had to admit, I can't, I can't do that, you know. And that stuff is still, it's still sometimes hard, you know.
I think it's hard. I think it's hard to admit those things. And it's hard to— I think when you admit them, then you're like, Oh man, like, I just feel like it's just, yeah, it's like a blow to your ego or whatever. But there, what you— what I try to do is like, there's a lot of things I can't do, but there's also a lot of things I can do, you know. And even if like going to that concert, like you, you couldn't stand the whole time, but there's like those, like you can, you can go still, but you have to do things differently. And that's like—
Differently.
Like, there's things that would be dangerous for me to go do right now, but maybe I can do them in my own way, or like FaceTime in, or send a cardboard cutout of myself, or, you know, like, some friends got together and they're all in the backyard and I just like sat in the front yard and like said hi to them, you know, like, and then left. And but it was at least I like, was like isolated in my own little area and they were way on the other side of the driveway and I could still say hi. It was like 5 minutes of bliss of like seeing people in real life and then I went home and, you know, and it's— I think, I think we'll find that like, you know, as this whole season unravels with COVID and everything is, we will be doing things differently.
Mm-hmm.
We can still do things, but we just have to do them a little bit differently and I don't know, try— I just, for myself, I'm just having to tell myself that I need to focus on the things that I can do rather than things that I can't.
Yeah. And, you know, I think that going through any difficult situation or life-changing event, you have 2 options. You can either, you know, let it destroy you, take you down, make you bitter and angry, or you can use that situation to make you better. By doing things differently. It's so much about perspective and how you look at it. I was actually training a client this morning, and if your ears were burning, I was actually talking about you. And I said, I don't know if you met her. She came to Salt Lake City with me the last time I was there. And I said, I don't know if you met her, but she goes, well, I've heard you talk about her because she was actually really down about a situation and only looking at it through just, you know, why did this happen? And I said, you know, if we get caught up in the why something happened, instead, why don't we say, you know, well, why not? What can I learn from it? How can I move forward? What action steps can I do? What can I do? And I think that's one thing that gratitude really helps us achieve. It really helps us look at what we can do instead of what we can't do. And it just changes your whole perception and outlook on life. And that is such a gift that you have. And you're right, I think we are going to have to do things a lot differently. Well, before we leave, I would love to ask you, and this is something I ask everybody on the show, is what is your definition of resilience?
Ooh, that's a good question. My definition of resilience, I think, I would say just showing up and giving your best at whatever it is. And yeah, I think that would be it. Just showing up.
Showing up. And whether it is a cardboard cutout of yourself, like you said.
Right.
I love that idea.
Giving life all you got. I think that is, that is all we can do, right? Whatever we do, like I said, to make it to the end of the day, that's, that's what we got to do.
Yeah, I love that. And just showing up. And I always have like things that I say, mantras or things throughout the day. And some of them are like, you got this. I mean, I have those. I have that written on my wall here, on my business cards. You got this. One of my best friends always calls me before every event that I do. And she's always like, You got this, or, you know, easy does it, or one day at a time. Those little things help me get through. But just showing up, just show up. That is going to be one of my new mantras. So I love that.
Let's just take it a breath at a time. That's what I say sometimes. Sometimes a day can be too much. So just a breath at a time.
I love that. Well, where I— you guys have to check her and her cute Puppy out on Instagram, but tell people where they can find you and if they want to learn more about Love to Breathe and just follow you, where can they find you?
Sure, yeah, so my website is lovetobreathe.com. Breathe has an E on the end, so sometimes people forget that. But, and then yeah, my Instagram handle is Love to Breathe, and that's where you can find me. So thank you for having me. I've loved catching up with you and just, just chatting. It's been so nice. You are, you are inspiration, Amberly, and you are a breath of fresh air. So thank you.
Thank you. You are just so— you have such a place in my heart. And last time, even, you know, when I was in Salt Lake City, you were talking to me. I couldn't see you because you were just— you'd just gotten out of the hospital. But you were kind enough, like, talking to me On the phone, I was, you know, like, I'm so nervous. I get nervous every time before I speak. And you always just bring such happiness and peace in my life. So I love you. And hopefully I'll get to see you this December. And thank you so much for being here and sharing your wisdom and your light.
Yeah. Thank you.
Thanks so much for joining us this week on True Grit and Grace Podcast. If you like it, please rate it or share it with your friends.
That would help too.
If you're not yet on the newsletter list, come over to amberlylago.com and jump on it.
While you're there, you can grab a free downloadable gratitude journal, and you might just want to check out my book or even check out my monthly motivational membership.
Thanks again for tuning in, and we'll see you next week.
Bye.
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