036 Life With Lyme

Congratulations, Lyme Fighter! Today you had the courage to open your eyes and face another day. Welcome to Lyme Voice. This show's purpose is to help you put the puzzle pieces of Lyme into place. Each episode is designed to inspire, educate, and encourage you on your Lyme journey to wellness. Together we will fight. Together we will heal. Together we will live. Here are your hosts, Aaron and Sarah Sanchez.

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Welcome to Lyme Voice. So glad you guys are here with us where fighting is a mindset, healing consists of choices, And living is the outcome. With me as always, Sarah Sanchez.

Hola!

So glad you guys are with us. We have been hard at it working on several different projects, which we'll get to in a minute, but for now we're going to actually go back about a year ago. Uh, we had Steven and Heather Groter, who have been on our podcast a number of times— what, twice now? Mm-hmm. Well, they had the idea of coming out and they ended up visiting us here in New Mexico. They drove down from Boulder, Colorado and stayed with us and, and visited with us and did an interview on us. So this episode, it was a lot of fun to do.

Yeah, it was.

But babe, what were some of the highlights of this episode?

I think for me, the big take-home was that in hearing you and Heather discuss— you and Heather being the healthy spouses— hearing you guys discuss things brought a new level of awareness for me as far as being able to understand, like, what you guys go through.

Yeah, and that's so important because most of you, if you're lucky enough to have someone in your corner, it's hard for the healthy person to understand. And that's what I bring to this podcast, is I really wanted the healthy partner or the healthy family member to understand what it's like. And hopefully through these podcasts, that is getting conveyed.

Yeah, I— well, I think it is such a valuable experience or a valuable viewpoint because none of Lyme makes sense. None of the symptoms make sense. None of— everything is so convoluted and hard that I think what's interesting is, you know, those ripple effects that go out. You guys deal with those same ripple effects that we do, but in a different way. And it was really helpful for me to see it from, oh, okay, that's why he's saying this. And/or, okay, like, one of the things I felt like I understood— you would— you kind of got to the point where you didn't want to go places without me.

Yeah.

And I would feel really bad because I didn't I had to be laying there capable of going places. I wasn't, but I didn't want that to ruin you guys going out and having fun either. But when I heard you and Heather talking about that situation, I just realized— I don't know, I guess I just always wanted you guys to go out and have fun, and I didn't want to be the reason you weren't going out there, right? But you were carrying a weight whether I was there or not. And that affected the environment whether I was there or not.

Yeah, even though the healthy person is not dealing with all the symptoms of Lyme, there still is a cost.

Yeah.

And unfortunately, it's a heavy cost. And we've heard way too many stories of couples breaking up over Lyme or chronic illness. And I understand why. I don't necessarily agree with that. I think you should stay together if you signed up You need to stay together in sickness and health. That's what marriage is. That's the vow I made. But it is hard.

And well, and there's so many factors at play. You have financial, social, emotional, all those things, you know, your background, your— all that stuff. And honestly, if just one of those things at any point in a marriage riddled with issues because of a chronic illness or finances, right, at any point, it only takes one spouse checking out and saying, I'm done, or I'm not, you know. And that could happen at any time from both sides.

That's true. That is true. Yeah. Well, I hope you guys enjoy this episode. I know it's a good one. I've been wanting to launch it.

Yeah, we've listened through it several times.

Yeah. And, you know, these topics are so hard to communicate. That's why we created this podcast. Now we have 30 6 hours of detailed information, and I feel like we're just scratching the surface. We had a newspaper interview today about Big Bite, Little Trouble, the book that Sarah— did I say it right?

No, Little Bite, Big Trouble.

Dyslexic moment. Little Bite, Big Trouble. And it was really hard to communicate to him. I felt like we just barely—

I felt like we did a terrible job. Trying to— he was like, well, what's Lyme and how does it affect you? And like, to tell someone in 5 or 10 minutes, it's too complex.

There's so many avenues to this disease that it's too complex to just give in one interview.

Yeah, like one explanation led to another. I was like, oh well, there's not accurate testing, so you need a clinical test. Oh well, there's not really doctors who, at least in New Mexico, are pushing you.

I think it's everywhere.

It was just like from one thing to another. This— I felt like the journalist was just sitting there looking at us like, what are you guys talking about? Because we— there were so many facets of, oh, and by the way, most of this isn't covered by insurance.

And oh, by the way, um, there's a big controversy behind the insurance companies in this.

And there's Lyme and chronic Lyme and all these different things.

I'm like fighting within the medical community between doctor to doctor. I mean, I just talked to a guy few days ago that they were seeing a Lyme literate doctor and then they saw another doctor and there's this conflicting issue and he wasn't sure what to do. It's really tough to navigate all this. That's why we have 36 episodes and plan on doing many, many more, because the social emotional aspect of this disease is huge.

Yeah, massive. And you know what's interesting too is in all the books I've read, and I read a ton, I read all the time, I don't even know how many books I've read about health and Lyme, all of them have been from the perspective of either the physician or the patient, not the patient's spouse or the patient's caregiver.

Yeah. And so I need to write that book, babe. Oh, maybe we will.

But I think that's really valuable for me. I've read all the physician side books. I've read patient testimonial books, but not having a spouse viewpoint is just helpful.

Mhm.

Well, so that leads into the fact that Little Bite Big Trouble is officially up and running and available on Amazon's website. Woohoo!

Yay!

It went live at like 3:00 AM.

Well, that's really cool, babe. I am so excited. I mean, What did you say? You were up at 3 in the morning uploading this thing?

Yeah, I was thinking about it and was having a hard time sleeping, so I got up from like 2 to 4 and worked on it.

So if you want to buy this book, you can go to amazon.com.

Yeah, put in the title Little Bite, Big Trouble, and you will find it.

And please go purchase this book because it will help us keep Lime Voice on the air. And yeah, It's really a beautiful book. You have to see it, people, because I mean, it was a huge labor of love, not only between Sarah and her illustrator and the designer.

My friend Sarah did all the design work on it and she just did an incredible job. And yeah, the illustrations are gorgeous.

Big shout out to Natalie for all the amazing illustrations, and a big shout out to Sarah who Tied it all together in a nice little package. Yeah, our editor. And big shout out to you, babe, for writing it and persevering. I mean, 2 and a half years took so long.

It was so ridiculous. I'm intentionally forgetting how many hours I put into this thing.

It's really a beautiful book. I think I cried the first 17 times I read it as we were going through the process.

And I told the journalist this morning, I said, you know, he said, well, where did this book come from? And I said, I decided I was tired of crying myself to sleep. And so I would— I consciously chose— I don't do it right all the time, but I consciously chose to write instead of cry. And at that time, one of the things I was grieving was just not being the mom that I know I was, or the type of mom I could have been. And I know so many people feel that way because in the documentary Disappearing from Society, Steven Groeder, when we interviewed him, he's talking about his boys and not being able to be the type of dad he wants to be. And it's heartbreaking.

Breaking.

Yeah, you know, my kids don't remember me as a healthy person. Yeah, I remember one time Nathan was floored that I had played soccer. That's right, he was like, you played soccer? And I'm like, this sucks. This thing that was really important to me for the first 25 years of my life, he doesn't even know about because I could barely walk down the street.

Yeah, well, so on that topic, Disappearing from Society is a documentary that Sarah has put an amazing amount of work into with Mackenzie. What's Mackenzie's title?

She was the director of this film.

Okay, she's the director, and then she did all the video stuff, editing, which through this process— holy cow, editing is the bulk of the work. Editing is a lot of work. So that is going to be made available through Line Voice. If you go to linevoice.com sign up for our newsletter.

Yep. We will email you an online version that you can watch. It's a short film, 20 minutes, but it will go out sometime here in the next few days.

And it's a beautiful— I mean, again, I was crying through that one, but it has actual documentation and footage of Sarah and a few others dealing with their symptoms. It's really a beautiful film. Well done. I mean, Mackenzie did an amazing job with the editing and the cinematography of it all. But it will be worth your time. Go to lionvoice.com, sign up for our newsletter, and we will send it to you. So enjoy this episode. It was a really long interview, about an hour and a half. So we ended up splitting it into two parts. The first part is where we're going to go through now. And then in the next following weeks, we will have episode 3 coming out, or part 2 of this episode., but I hope you guys will enjoy as much as we enjoyed doing it. Thank you. We'll see you next time.

Well, welcome Lime Fires to a unique episode where we have guest hosts Heather and Steven Groeters coming at you live from the Sanchez household in Rio Rancho. And as we begin every Lime Voice, we just want to start with a question for Our guests today, Aaron and Sarah Sanchez, are you ready to help us put the puzzle pieces of Lyme into place?

Oh yeah, we're ready.

Awesome.

You do that so well.

We've had a lot of listening practice. We're big fans. We're your first biggest fans.

Totally.

That is totally true. Yeah, we're down here to meet you guys in person, to encourage you on your own Lyme journey, but also to receive encouragement. And just in the day that we've been here I feel like that's happening. Yeah. And so if you hear kids in the background, it's probably our kids screaming about a funny part in a movie or something like that.

There are 9 kids watching TV in the other room.

Yes.

9.

And this is how you podcast with kids.

Yeah.

Yeah.

This is how it's done. We have a series of questions that we're hoping to ask you guys as seasoned Lyme fighting veterans. And we have been a listening party to all of your episodes to date. So we've tried to outline some questions that maybe haven't been covered yet. Yeah. And to try to get some insight from you on certain areas. So I can kind of lead us, but Heather, jump in too. Sure. And I'm going to use words like most important or give me the most helpful. And really kind of what I mean by that is just what are some of the things that come to mind? I'm not really looking for you to search the memory banks and give me the top, most, or best, or whatever, but just what really comes to mind. So for example, what's the most important thing that you would like to have your friends and family understand about you in this situation?

About you as a sick person or about you as like a—

About you as you fight Lyme disease. In your role. In your role. So Aaron, as a caregiver or as somebody who's battling the infection.

I think the most important thing is that I'm doing the best I can, because a lot of times I come up short, and I know that people see me coming up short because I missed that deadline or I missed that opportunity or I wasn't able to attend. And for them to understand that I'm really doing everything I can, and even though the circumstances are not reflective of your best effort, it really is because of this added burden of Lyme or of chronic illness.

Heather, what if I look to you? I mean, as a caregiver on your side, how would you answer that question?

What's the most important—

how'd you phrase it? Yeah, what's the most important thing you would like your friends and family to understand about your situation, about your fight against Lyme?

Right.

I think maybe one of the most important things is for them to validate the challenge and be positive. I think people can get, you know, worked up on your behalf, and for me personally, I spend so much energy trying to avoid getting worked up and negative about things that it's, you know, I don't want to have to expend the effort to explain to someone else or to try to overcome the negativity on someone else's behalf. So for me, it's more helpful if someone says, "Wow, you know, I don't personally know what you're going through, but it really looks challenging. It really looks tough, and I think you're doing a great job." You know, just kind of validating in that way is kind of the most helpful. Yeah. Just, you know, cheering you on.

Yeah. What about you, Sarah? What would you like friends and family— what's really important for them to understand?

I feel like I always, like, after so many years of saying the same stuff, like, I know you only have a once-a-year picnic, but I really haven't been able to come for 3 or 4 years in a row. Like, it really was true. Like, I was doing the absolute best I could to be present and available, even in small ways. But I mean, my heart was with all these events that we were missing, and my heart is with the late-night poker game that you can't play with your family because you have to go sit with your feet up or whatever. So I think it's just that I just always felt like my life didn't look like what I wanted it to look like because of my physical limitations. I don't want a fridge that's messy and gross because I like order, but I don't have the strength to stand here. And if I do, I only get to pick one event per day. So what's the most important? So you're operating at like this, just like putting out fires. This kid needs emotional support. The house needs, what's the most critical thing physically to clean up, you know? And I couldn't figure out if I was lowering my standards. That's how I felt like, oh, I'm just compromising. But I wasn't, I just— when your muscles don't work, you're just playing that inner battle. And so I just, I would think like maybe I was getting lazy. And so it was very helpful for me to have my family like understand that it wasn't a, laziness factor. It's a survival factor.

I really resonated with what you said, Erin. In fact, this morning Heather and I were chatting, thinking in advance for this interview, and my response to that question was, I want people to understand that I'm doing the best that I can, which is verbatim what you said. And that's really, you know, on the person fighting this infection, and you're the person receiving a helping role. It's just understand that I'm doing the best that I can, and it's not just a big push and then a kickback and watch a TV show at night. It's the best I can every second of every day. There is no such thing as letting off the gas pedal.

Yeah, and, uh, ever, ever. I mean, we say that— I feel like we're just in the last few months getting to a place where we're like, we're not in crisis. The laundry's caught up, no one's crying, like we could go to the park or a walk. Like, oh my gosh, it's so freeing.

And then you don't know what to do with yourself when you get that moment and you have a choice.

And you're like PTSD when you're doing it.

Okay, you were saying, babe, when you're having a moment—

brain works— oh, where it's fun and it's new, you know, even something like this, I have to even tell myself like this is what normal people do. This is normal to go from one event to the next. Like, it's becoming less of a really loud, constant voice, but it's been there for so long that it's weird. Like, I feel like I don't know how to function sometimes in social settings. And I know that I'm probably being— I'm just, because I'm an extrovert, typically, you know, the fact that it drains me on such a different level is I'm like, "Oh, no wonder other people like being by themselves." Now I love being by myself because I can think.

And kids are a whole different level too.

Yeah.

You know, I can handle more events if it's just me going to events, but when you're doing family events and there's kids involved, then it's— there's just a lot more intensity to it.

Yeah.

Sarah, you mentioned earlier something that seems to come up a lot in difficult journeys of chronic illness. You mentioned that you'd like to have people understand this isn't what you want, and sometimes that gets confusing for people outside of this issue where they're trying hard to figure out why something just isn't going away. And a lot of times people come up with this notion, well, you must be getting some benefit out of it, right? You must be doing this on purpose. You need to resolve something and let it go, or you're never going to get better. And that's a real challenge because It's a day in and day out of letting go of all kinds of things, and you really don't want to be in that position. So there's this challenge with people not being able to understand. But let me just kind of slide us into the next question, which is, yeah, you don't want to be here, but there are some benefits to this challenge, to the frontline fight. And so I wanted to— you got to talk about this. It's a couple of decades now.

Yeah.

Think, think hard and what, what is it about, you know, fighting Lyme disease that gives you benefit? What, what are the benefits?

Good question.

I think for myself it's been a proving moment, like, yeah, you can do that, you can handle that. I've faced death and I can handle it, you know. I personally wasn't sick, but I faced death within Sarah and within my own family, and we had to address death, and I never knew I could handle that. And it's also allowed me to be more empowering. I mean, even the fact that we're doing this podcast is because we faced Lyme, because we traveled that path. And once you're on the other end, hey, look at how strong I was, look at how— what I was able to do because of it. Not as a pat on the back and like a gloating thing, of course, but as a way to compliment yourself because It is because you feel like a failure when you're—

yeah, sick.

I mean, we all know how hard— well, I was— if you're like me, I was really hard on myself. I still am hard on myself. Yeah, like, you know what, you should have got up at, at 4:30 instead of 5. Right, like one half hour is gonna make a difference in a lime bucket, you know what I mean?

Like, seriously.

Yeah. I think it's very hard to have time, energy, or to have time, energy, and finances all come together as a sick person because there's always something that you should be trying or should be looking into, especially when you're like, "Okay, the sooner I get this figured out, the sooner I can kind of start functioning at that higher level." So I think, yeah, it's just like abusive to yourself almost, just the mental rat race of trying to figure out because I just was so used to hearing myself say the same thing that I thought, how is anyone going to believe me? I've been seeing this for 4 years, 5 years, 6 years. They're going to think like, oh, she must be doing something wrong, or she must want to be sick, or—

So where's the benefit? I'm following with you. I'm on your page. But what's the benefit of this? I mean, that issue, how does that spin into— how can that be helpful? Maybe somebody who's listening to this is brand new, they're not yet a veteran to this fight. How can they use that and come up with something positive?

So like my fridge, I love— like, I like when things are organized, but I haven't been able to do it. And I was thinking, like, I went shopping because you guys are coming and we have bunch of group meetings and stuff, I was able to— like, when I look in my fridge, the food in there is real food and it's good for you. And that, like, I think is something that I've learned is just how valuable the good food is and how empowering it is and how really what a prize it is to be able to feed your family and feed them healthy meals because A lot of people around the world don't have that privilege. And when you have not had the ability to stand or stir or cook, it's just a great gift. And I don't think we would have come to that. Like, if we were going to throw a party, it would be like Diet Cokes and white cake and, you know, like party food. And now, like, when we have party food, it looks very different and it's going to even keep improving like as we move forward. But I don't know if anything would have ever brought on that drastic of a change to be like, well, it was harder for me to give up Diet Coke than it ever was pain meds. Like, there's no comparison. Yeah, and pain meds are a big deal for people, but like, I hated the pain meds, but everything else was so beneficial for the long term.

Yeah. Heather, do you have something to add to this too, like in your fight? So we're coming up on 5 years.

Well, along with what Sarah was saying, it was so hard to give up gluten. Yeah, but now that—

so why did you give up gluten? Sorry, a little tangent. Yeah, why did you give up gluten?

Well, for my health issues. So I had a lot of neck and back stiffness, joints. I'd wake up in the morning and immediately have— just be stiff and in pain. And so through the testing that that you, Stephen, went through. I ended up getting some of that too and found out, yeah, you're super not good with gluten. So I had to let it go, and I— that was probably the angriest day of my life. Yeah, um, I was very angry.

So for those people who are listening, there is a spectrum of sensitivity for all kinds of things, gluten one of them, and Heather is at the spectrum where it is allergy level severe. This is something you have to do. Not a nice to do. Yeah. And so I, I guess that's a benefit. So you found that out before it's too late. A lot of times people find out about this after they're devastated.

Yeah. So I gave it up and it was a hard switch. It took me a few weeks, but I'm so, so thankful. Yeah. I mean, I feel way better than, you know, than I did back then. And I don't look back and I'm not tempted. You know, so that's, I guess that's encouragement to anyone having to give up gluten. It's a challenging few weeks, but once you're out of it, it's a good switch and it'll make you feel better. Yeah, but in answer to the question, that was just kind of off of what Sarah said, but me personally, I think I had just, I just had no idea what chronic anything meant. I didn't grasp that concept at all. I wasn't aware of it. And it's interesting once you have that in your family, people with chronic anything are just coming out of the woodwork. I mean, it's, it's everywhere. And I was completely unaware. And I feel the blessing for me is just having compassion and an awareness of, you know, this whole realm out there that exists. And, you know, even if there's not anything I can specifically do for someone, just having other people aware and understanding of your situation is so helpful. And such a blessing. So it's, it's good to be, you know, to team up in that kind of way. So that's kind of what I see as the blessing for me.

Yeah, I'm going to throw out there too, and I see this in this group, and that just by virtue of you guys putting on this show and everything, this level of compassion that you guys are sharing with the world through this podcast and doing all the efforting, you know, to make this happen It's just not everybody else is doing that, but you guys are doing that. So somewhere along the line, that muscle in you that's called compassion just seems really strong, and you can just feel it even in your house and in your home and in your podcast. In your podcast.

That's awesome. Thank you. I guess I hadn't thought of it in those words. Yeah, and I have girlfriends who knew me like in high school and college and stuff, and We've had this conversation of like, you know, what you're naturally gifted at, and mine is not compassion.

Yeah, mine either.

It was like, get up, get going, you know. But when you can't, everything changes. And then it makes you understand like the other burdens that other people are under. Like, ours has been Lyme, but there's other people who are under different types of oppression, and that's what they are. It's oppressive. To live with chronic needs or chronic pain. And so it makes you sympathetic of everyone because, yeah, because you feel their hurts, kind of, I guess.

One of the things that I'm most excited about is just the learning that happens with Lyme disease. There's a lot of it that's really challenging, and anybody with Lyme disease knows that. So you learn a lot about challenge. But one of the benefits that I seem to have gotten out of Lyme disease is I have learned every nook and cranny of things that drain my energy. And I'm going to take it generically to say that things that drain my energy are bad for me. Right. And so I have gotten just a list of 100,000 things of everything that drains my energy, things that I wouldn't have really known before. And so the benefit is sort of self-learning.

Yeah.

But also the benefit is someday when I am better, better enough, I'm going to continue to avoid those things, right? And be as strong of a person as I can be. I'm going to avoid things that make me feel weak.

Oh yeah. And don't you think, like, and we've said that, I feel like 5 years from now, even financially, we'll be in a better spot than without it because we're learning to work differently. We're working smarter versus harder. We're developing new skills. We don't fit into the norm of a family. Like, we need more resources when you have chronic illness. There's no little box, so then you have to change the way you do everything. But it's all intermingled, and it's all for making you a better, bigger person on the whole.

Yeah, and it's weird how it all works out because it really— like, even though we're struggling at one of our toughest times We're seeing that with these methods, with this outlook on life, but basically a fight, heal, live outlook on life.

We're like, we face death, we can handle a podcast, or we can handle a book, or we could handle whatever.

It has really expanded our vision, and it shouldn't be like that in some ways. I mean, how many interviews have we done with these amazing people? Bhavani, for example, episode 24, where she's doing this Not in spite of, because of she's doing these things. And I think that's kind of what you're sniffing around, Stephen, is because of is why we're doing this. And we're really taking that attitude. And it's not like, oh, let's pat ourselves on the back because of it. It's just shown us what we're capable. If you can handle Lyme, if you can survive 1 year, 2 years, 5 years of Lyme, you can handle a lot and you can do a lot.

Well, and that discipline carries over.

Mm-hmm.

That force— I remember thinking at like 18 months of juicing, I had done it out of obligation, but like somewhere around 18 months, it like— I became deeply aware of like how valuable it was to me as a person. Emotionally, I'd do better. I would sleep better if I juiced. I would have more energy the following day. All these things. And I told Aaron, I said, Even if I was fully restored to who I once was, I would still juice 4 or 5 days a week because it's so valuable to me. And we never would have been that way.

So for people who are just getting into this journey, or if you're trying to encourage somebody else on this journey, don't look for things where you can hold your breath and hope this goes away in a month. Look for things that you can invest in, learn the habits that can cause you to be a bigger and better person for the rest of your life. And use Lyme disease, use pain, use nausea, use fatigue, use those as motivational factors if you need to. But yeah, just learn those things that are gonna be awesome for you.

Well put.

Yeah. Yeah, that is really well put.

Yeah. You know, and then I think of one of an episode back with Emily and Phillip when they were talking about going gluten-free, since we were talking about that earlier. One of Emily's point, or maybe it was Phillip, Emily and Phillip's point was —If it's not replacing it with a gluten-free alternate, it's just doing without. It's just making the adjustments. It's not, "Well, let's just eat gluten-free bread until we can get through this." No, you— maybe you just need to really not take so much grain in, not take so much wheat in. And, you know, it's that discipline that just enables you to keep moving forward. And like you're saying, just adjusting yourself to what you can do. So yeah, maybe you don't go 100% gluten-free. Maybe you start with one day gluten-free, but I think that's really the only way to approach it because there's a very long list of things you didn't do and that you should have done, and it's a huge list, so you'll never reach it, so give up trying, you know.

For nearly 2 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.

So you guys shared a little bit about handling the challenges of Lyme, and one of the questions we want to ask is, how do you prevent yourself from being angry with God?

That is, uh, that's a good million-dollar question.

Give your audience some tools here. I mean, there's people that are listening right now that are pretty angry and have reasons to be angry.

Yeah, yeah, you know, we've really— that's interesting you said this, that point, because we've really been— I've been angry at God, and very angry, and what I realized is that he didn't do this. God didn't do this to us. It happened because there's death and disease in the world. Just like a child doesn't— or as a father, you don't want your kids to run out into the street and fall and hurt their knee, right? For us, I had to realize that God didn't want me to be hurt, want us to be in suffering. He wants to help us out of it. And that mind shift was huge for me to think that God is here to help, not to persecute. And I think that attitude when I was mad at God is because He was doing this to me. And that's not the case. He's not doing this to me. There is some debate about allowing it and not, and you can write me letters or whatever, but what helped me was realizing that God didn't desire this for me.

So being open to different perspectives on why bad things happen to good people, opening your eyes to different perspectives. How do you get— so open your eyes. So let's say somebody's willing to have opened eyes right now, but they're in this, they're deep down, they hear that broken record of pain and stuff where do they go to get fresh perspectives? I mean, you, you mentioned two, two different ways of kind of thinking about this. Um, how do people do it if they don't have enough energy to read 100 books? Or—

right, yeah, well, this podcast is a great start, and there's some other podcasts that help. There's a lot of really good books that kind of sum up.

And you probably— what do they say, like, to change a habit or something, you need to find a new energy source? So you have to trade, basically, like find things that you can get energy off of. And for me, for a couple of years, like I could not handle television. It just was so draining on me emotionally and stuff. And I listened to Christian music all the time because it was the only thing that like brought my head up above the pain and above the clouds. And, you know, sometimes twice a day, sometimes 100 times a day, I'd be like, "I can do all things through Christ who gives me strength." And sometimes that meant getting out of bed, and planning a birthday party when you have nothing to give is really how you feel.

Heather, how do you prevent yourself from being angry over this? You mentioned earlier you spent a lot of effort trying to stay away from those patterns.

I always had to fight negative feeling with positive, yeah, positive thoughts. So for me, it was always looking for something good, being thankful, having gratitude. You know, there's always the flip side of that coin of, well, I can, I can sit here and dwell on all of the bad things. Those are really easy to come by. It's really when your family is fighting Lyme. I mean, you don't have to think too hard to come up with the big old laundry list of difficulties in life. But, you know, just shifting your mindset to, all right, there's something good and there's something I can think about that's positive, something I can be grateful for, some— something that was a gift to me today, or— and focusing there was always helpful for me.

I think it's a part— I think it's a huge part. I spent the summer with a coach through an accelerator program, and as we were talking through this, because I've probably written about 75% of my story down and will plan on publishing it at some point, and he said, how do you— he's like, I don't think the end of your story has unfolded yet, because he said, I would imagine you're really mad at God. And I— we were in a restaurant and I like started crying. I was like, I'm not mad, I'm just heartbroken because of all the losses. And, you know, I think you have to learn to wrestle with those. And for me, I feel like one of the things that benefited me was I just knew enough about scripture to know that God was for me. I know God is for me. I know he sees my tears. I know, you know, and had a dad who was loving. And so that's an easy transition for me to be like, okay, this is not God's will for me. This is chaos. And I wasn't always at that point where I, you know, because certain Christians would say like, oh, well, maybe being sick is God's will for you. And personally, I don't agree with that at all. But you have to wrestle through that, and not just once, like thousands of times. Wrestling through, and I would just always have to come back. One of my favorite scriptures was like, I think it's 1 John 5:5, where he says, "Victory that has overcome the world is this, that you have faith." What is faith? Victory that you've overcome the world. And I remember when I'm trying to take a shower so I can go to church and I can't hold my arms up and my legs are falling asleep and I know I'm done for the day and I'm just like so frustrated. I would just have to say like the fact that I have faith and that I'm still here is victory. Even if I don't see it physically, it's victory. And just had to sit on that for years to not feel like a failure.

A lot of the times I find myself using a variety of tools to try to prevent being angry over this situation, but totally one of them is to just say, I like to think this way, that God's expectation of me for today is based on the cards that I was dealt today. So my job isn't to play an ace of a day, it's to play an ace of a day based on the circumstances that I have. And I feel like that relieves a lot of the pressure for me, is just to know you're doing the best you can. Yeah, and to feel or to think about God out there understanding, he knows the situation and kind of putting everything in context when no one else around us really can. They can't see your volume of pain, they can't see your history, they can't see how many minutes, hours, years you've had struggle, right? And even for those of us in Lyme, it's so big I can't comprehend it either. It's so confusing and all that, but there is someone out there who can, and You know, I just focusing on him, on God, understanding the situation and just knowing, coming back to the first question we were talking about, I'm doing the best I can.

Yeah, so I think that's the hardest part. Like, we've realized like we're so hard on ourselves because we had to be. Like, when you're the parent and you're on duty and bad stuff is unfolding, whether through neglect or just loss or trauma, it's hard not to feel like an absolute failure. And we have gotten a ton better, you know, like you said, using different tools. Yoga for me is huge. Emotionally, if I'm going downhill, I go to yoga and emotionally I'm really good for a couple of days. And so now I realize, okay, if I stop juicing, if I stop going to yoga, like I kind of keep this balance to stay up. And I love being there. It's awesome. But it, it's a lot of work.

So, so let's spin more into this a little bit. What are some of your biggest inspirations so far in your Lyme journey? What has caused you to be inspired? You mentioned a couple just now, but what else jumps out? So inspired to just keep going forward, inspired to dream big, generically inspired in order to survive, yeah, do whatever well.

To keep going? I'm stubborn. You can't tell me what to do. No, I know that's a joke. I don't know. I think it's hope. If you lose your hope, you know, I still have hope, and that's the one thing that I haven't lost throughout all this. At times it's dimmer, I guess you would call it. Your hope gets dim. But if you, if you know, just holding on your hope And you don't know what tomorrow is going to bring. It could change tomorrow, good or bad. Enjoy today. Enjoy what you got. I mean, we just spent a wonderful morning in 70-degree weather in the sun, absorbing all the vitamin D we could. I mean, to be sad about the fact that we had to come inside because we're fatigued, you know, you guys are fatigued, that— what a waste, right? You know, there's still hope that tomorrow we're going to have that experience again. And enjoy it, rejoice in it, and not focus on the loss, not condemn yourself. There's so many things to be upset with yourself about, and I'm talking to myself right now, and I have to keep reminding myself that, no, it's good. It was a good day. There was good things that happened from this day. And perspective, you know, why is perspective such an important role in our lives? I don't know, but it is, and it plays a big deal. And one day you're in total despair and blackness, and the next day everything's rosy and fine. And what's changed? Your perspective. And that's it, you know.

So, and that's kind of how yoga sounds like it is for you, Sarah, where it's resetting or reinvesting in that. Yeah.

And I have sobbed through yoga classes. Sobbed, just like heartbroken. But I'm like, okay, I could either like drink heavily, or like, what's a healthy way to cope with this, with this emotion? What's a healthy way to cope with these tears? What's a healthy way to— and so I'm like, okay, I go back to the basics of going back to my juicing, going back to the things that I know have long-term benefit, and then Yeah, I feel like you almost have to be on a chronic state of looking out for what inspires you.

Yeah, what, what inspires you today might be a little bit different tomorrow, but in a word, it's people. It's the Sanchez family doing this podcast. It's the people on your pod. It's— I think for me, it's people are where my inspiration—

well, it's so energizing. I was going to text you guys on Friday when you were driving and say like, your trip has already been a blessing to us, be in the sense of like I didn't feel obligated to have the house all perfect because I knew that you guys knew, like, this is— that we're living it too. This is where we're at. Yeah. And, you know, that's really rare. So to just have, like, yeah, the time, energy, and resources to just have you guys come and hang out. We have not gotten to do those things that are just for fun and just for pleasure and just for community or, you know, So it's awesome.

Are there things that are jumping out to you, Heather, when you think about like our journey is 20% of the journey in terms of time that you guys have had, but when you think the word inspiration, what's jumping out to you?

What jumps out to me is you.

Aww, that's so sweet.

I'm gonna pull myself together, but just watching you navigate it so graciously.

Well, at times more than others.

At times more than others. No, I'm, you know, I just think about, you know, here's New Year's Eve not that long ago, and you being so, so, so sick, you know, the worst you've been in quite a while. And, you know, I check in on you and you say, I'm in good spirits. And just like, just knowing that you were you were in such a tough place, but that was your response to me, you know. That's inspiring just to be a part of that and to see you coming up with ways to overcome and to be victorious in spite of what you're going through.

I, I would agree in that, like, watching him through the eyes of being sick and stuff, one of the things he didn't always know what to do, you know, we didn't know what decisions were best or what were, you know, just kind of like trying to figure it out. But you were always so kind year after year, night after night. Like, you were always kind to the point where I'm like, when I'm healthy, I'm gonna make sure that like I want to model that because I didn't even believe myself sometimes. Like, maybe I am insane, maybe I am, you know. And he would always predominantly just be kind and gracious. And that says a lot years into things. It says a lot about who you are as a person, who your character is.

Being on the lookout for inspiration from other people that you see, I think, you know, just being intentional for that, you're more likely to find it, right? Yes. Just like anything, when you're, when you're interested in buying a green Jeep Wrangler All of a sudden you start seeing them everywhere. Yeah, it's almost like let's be interested in finding inspiration, and we're likely to find it in people. And just keep looking out, whether it's your spouse, your partner, other people who are sick who have made really critical decisions. Just, yeah, being on the lookout for other people.

Well, and I think too, I mean, the important part of that is being on the lookout for that, because like I was saying, perspective earlier I mean, I'm thinking Sarah's compliments are very nice, but I'm like also thinking all the times that I wasn't kind. So there is a certain— from the other side of the view, there is a certain amount of expectation that you are looking for. I mean, if I wanted to highlight every wrong thing that someone did, oh, it's easy, you know. But if— I think even having the attitude to look for inspiration is part of that whole key. You know, I really do, because you know when someone doesn't like you for whatever reason, they're going to find every, every hiccup, every blemish in your character, and they'll find it and highlight it.

It's real too. Yeah, they'll just find them all. Yeah, yeah, yeah. So I'm kind of switching more, you know, a lot of these questions are fight, heal, and live all at the same time, but part of healing is sort of Putting yourself in a situation, a mental situation of, okay, when this does go away, so the thinking positive as much as you can. But let's dream a little bit here and just say if you had one day off from Lyme disease, you knew it was coming, you could plan for it, you could count on it, it would be the entire day. The next day you'd go back into it, but you'd get one day off. What comes to mind? What would you do?

This is the fun question.

This is kind of a heal and live. Yeah, so I can, I can answer that. It was interesting because I— it was my birthday and my sister Jenny, who lives in Chicago, was here last year during— she comes and works in town for a couple weeks, so she gets to spend large chunks. So I— my birthday is December 23rd, so for 2 years in a row now when she's been here, she's like, what do you want to do? And I want her to go to yoga with me, you know. And then go have lunch or— so you have community, you have health. And I was just realizing this year, as I wanted the same thing for this birthday, like I went and got my toes done, but we went and had lunch and it was really fun. And, but I got to exercise and felt good emotionally. And just to be at that place where you're just like existing and happy and along for the ride and looking forward to things. And so it was just funny. I'm like, I feel like there's been this meshing of what I ought to do with what I want to do because of the long-term benefits, and I feel like those are kind of solidifying. Does that make sense? Yeah.

Day off for you, Aaron?

A day off for me, um, how big can we go with this? 24 hours. I think it would be a day where we could do what we wanted, you know, or it wasn't because we had to juice, we had to take that pill, we had to drink our water, we had to That's a hard place to come to, like, what do we want to do with our time?

Yeah, like, what is that?

Yeah, and if it was regular, you know, then you could plan for it and be able to function like that. But I mean, even right now, like, that kind of day is just like a pause day where you just don't do anything. We don't— you, you know, like, I'm thinking Jamaica, like, 7 years ago we went to Jamaica for our 7-year anniversary, and we spent a day on the beach, and all we did was read and drink coconut rum and laid in the hammocks. And laid in the hammocks, and the food was prepared. I mean, that was so awesome. We didn't have to do anything. I mean, you could do that here, but you didn't have to do something, you know, that, that, that freedom.

More of a sense of being versus doing. And I don't know if that's conditioning Because I've talked about that on other episodes, like, has my body been conditioned to do that, or have I really just come to this place where, like, I understand it and it's so valuable and it's so precious that you're like, "Oh, I don't have to do something. This is it.

It's happening right here." Yeah, you spend so much time doing so that you can be. It would be nice to have a day to be without all the doing.

I know. Yeah, I just need servants and housekeepers.

I'm sure you guys can relate to this. If I do have a moment of feeling good, I might hop to and do something on my bucket list or check. Totally. But there's absolutely no guarantee. In fact, it's probably the other way around. The more likely I am to go quick, run and do something, the more likely there is a consequence and a penalty and a payment due for that. So to be able to count on a full 24 hours, you know, it's pretty unusual. You might get like 10 minutes, sometimes it's only 1 minute, you know.

But yeah, which you usually just sit. Yeah, it's really interesting. I can finally sit and yeah, enjoy this feeling. Yep.

You know, during those moments, and I'm a very active person, or, you know, inherent, that's who I am as an active person, even if I can't portray that right now. But it's, if I ever have moments where I don't have pain, the first thing I want to do is sleep. I just want to sleep. And it's interesting, I don't necessarily— those are in the moments, but if I could plan on a full 24 hours, I think you put the words— you described are really overarching and they're awesome. And I think I would do those things on a mountain biking trail.

Yeah, yeah, it's just rest. I think that's what illness robs you of, is it robs you of peace. It robs you of rest. It robs you of the finances to rest, to vacation, to do all those things. So it's rest, like just being calm and still.

And this kind of ties back to even that first question where a lot of folks, they work a really hard week, but then they can take off. At least the 6 hours they sleep at night is off. It's right, you know, and a lot of times with this particular illness there just isn't an off, right? At night I think is more challenging for me. It is hard to say that, but it's really true. The night is more challenging, not rest. It's the opposite.

Yeah, yeah, just to be able to wake up and like stretch, like, is so precious to me because for so many years if I stretched at all I would hurt and just to have that felt like the energy was just getting sucked out of me. So you learn not to move too much, not to stretch, not to do anything. And so you're just like imprisoned. Yeah.

Dr. Lam wrote a book on adrenal fatigue syndrome and he said when you're in that state of severe adrenal fatigue, a hard stretch can crash you.

Yeah, just, just stretching or a bowel movement or anything. Yeah, it's crazy.

What are you gonna do with a day off, Heather? A day off from having to support somebody who's sick.

So last summer, Stephen's mom paid for all of us to go to Myrtle Beach for a week. Oh, fun. Stephen couldn't go because he's just not in the place of flying yet, but it was so fun to frolic in the ocean with the kids and boogie boarding and Being out in the sun and having the salt water. And I would love for Stephen and I to have a day in the ocean playing with the kids. Yeah. You know, having him be a part of that experience because that was so much fun. Yeah. So someday.

Yeah.

We'd have to drive there.

I used to tell Aaron, I can't because I didn't want to say every time, like, I would snuggle up with him in bed or he'd snuggle with me as we're going to sleep. I'd be like, "I hurt so bad." And so finally, after a few years, I started saying, "I can't wait until someday when I don't hurt to snuggle up to you at night." And I don't— I remember thinking as I said it, like, "That may never happen." I don't, you know, but now I'm like, "Oh, I was waiting for this moment where I could lay next to you." 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 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 invida.com. Disease is contrary to life. Therefore, wherever disease exists, life 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 LionVoice is provided as is without any representations, warranties, expressed or implied. Okay? Okay. LionVoice 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.