084 LymeNado- The Tornado that is Lyme disease treatment

And that was hard for me too.

It was really hard for you because we ended up coming home earlier than expected things, and then you were disappointed, frustrated at the situation.

At the situation, not at you. I knew exactly what happened. It wasn't your choice. You wanted to be there just as much as I did, but we're still both sitting there with Nothing. Yeah, all the buildup and then nothing happened again. We had to cut the night short. It was lost again. Like, we're, we're, we may even try to get with them a fourth time. Welcome to Lion Voice. We are your hosts, Sarah and Aaron Sanchez. We created this show designed to inspire, educate, and encourage you on your path to wellness. This show's purpose is to help you put the puzzle pieces of healing into place. Join us as we interview other warriors and discuss how fighting is a mindset, healing consists of choices, and living is the outcome.

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

Lime Voice thanks Invita Medical for the continued support. Please reach them at 1-866-830-4576.

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

Welcome to Lyme Boys. We are your hosts, Aaron and Sarah.

Hola.

We have a great show today. What are we gonna talk about, babe?

We are gonna talk about the realities of Lyme disease, especially when you're going through ups and downs and emotional things and treatment. The tornado of Lyme, which I can only refer to as like Limenado. Yeah, yeah, because you never— if you picture Lyme as a tornado, you never know exactly where or when it's gonna hit. When it hits, it creates damage or chaos or cost, and then you have to adjust emotionally while still going on and picking up the pieces.

Yeah. And I think it's actually kind of Sharknado, if you've ever seen that ridiculous movie. It's absolutely ridiculous. And there's sharks like flying out of the sky, gobbling people. I mean, it's like, I can't— you never would this happen.

It's so bad that it's good.

Yeah.

And in a way, in a dysfunctional way, in a dysfunctional—

you could like, that would never happen. And I feel like Lyme is the same thing. Oh my God, there's so many times you're like, that would never happen. That's ridiculous, but it really is as ridiculous as the sharknado.

Yeah, yeah, so we'll get into that, but we—

what's going on this week?

We are gonna be in Westminster, Colorado for the Live Lime Summit. It's the 2nd annual Denver area conference, and we're really excited to be there. If you guys are in the area, We would love to see you.

Or make plans to be there in that area.

Or make plans to come hang out with us for the weekend. Yeah, that'd be really fun.

Saturday, Sunday, it's a great time. A lot of great speakers, doctors there, and then even the community. It is so healing to be part of the community, to have a conversation with somebody in the bathroom, and before you know it, you, you walk away with this renewed spirit just from being around other warriors. It's worth the effort. And I would highly suggest going to this one. And if not, make plans to get to one because it is such a great time.

Yeah. So we're looking forward to that.

And all the information will be on our show notes. We'll even have a little plug where you can download the app or download the app, download the packet with all the information, registration, costs, hotel, everything on it will be on the show notes.

So on a funny note, um, the other day I was doing your enema, doing my enema.

It's an enema story.

It's an enema story. And, um, you know, I've done— I've been doing enemas consistently for 6 years, and the first couple of years I did it twice a day.

And so 6 fluid years.

It, the other day I was like, man, I didn't even do any hard math. And I was like, I've probably done over 1,000 coffee enemas. And I talk about it all the time 'cause they've been a big part of my routine and it's one of my game changers. It's super cheap. And so it's definitely one of my go-to as far as like keeping myself up and functioning. And the other day, so you guys have heard us talk about our alkaline water. We have water that's got antioxidants in it and I use what's called beauty water. For colonics and enemas and stuff. And it's really good for hair and skin. It's a 6.0 pH balance. And so I use that for making my coffee and doing stuff. But to clean my enema bucket and the tubing and everything, I use 2.5, which is very similar to bleach but without any toxins. So it's really powerful. But we— and we live up in the mountains. We have like no bugs hardly ever.

Hardly any.

Except for a couple times a year, like We need 4 weeks out of the year.

The monsoons have been coming, so we're a little wetter than normal.

And we get only 2 things: these little tiny roaches and like some biting horseflies.

So I'm gonna have to take a picture of one because they have to see them. There are like these cockroaches, but they have like a big pincher claw on it, and they're really skinny, and they look, they look ugly, like they could bite you. Not a regular cockroach.

So right now I do colonics 3 times a week and I hang my bucket to dry in the bathroom. So like the tubing dries, I rinse it out with 2.5, hang it there, let it dry. And the other day I was getting ready to do an enema and I had my bucket and I fill it up with the 6.0 beauty water and I'm getting ready to do it and I don't, So sometimes, sometimes I do coffee at the beginning, right?

Which is very dark.

Which is very dark, right? And then sometimes I do water at the beginning. I do a couple buckets of just water colonics and then finish with coffee enemas, right?

And now the tube is clear. The tube that goes in is a clear tube. You can kind of see through it.

So I'm filling up the bucket and you got to get the air out of the tubing. And so I've— I hope I had the bucket gets mounted on the wall and then I hold up the tubing and I get the air out of it.

And as Gravity feed.

It's a gravity feed. And as I, I am doing this, I just happen to see like a little brown speck of something, and I stop what I'm doing and I look. I'm like, what? And inside the tubing of my enema, like right before the tip, is one of these skinny 1-inch long claw roach creatures.

And at this moment, you are like ready to insert.

You have it in your hand ready to— Yes, I am naked on my bed.

2 seconds away from putting this where it needs to go.

2 seconds away from putting it up my butt and I was just horrified. Like it would've scared me so bad. I just couldn't, I mean, I was 2 seconds away from starting this whole protocol and if I had started with coffee, I would not have seen the roach and that was horrifying to me. So the lesson for today.

Always rinse your tubing.

Always rinse your Edema tubing.

With 2.5. 2.5 will kill all of the germs that the roaches left. You have to rinse every time.

Oh yeah. If you want to know more about our water machines, you can go to limewater.com. There's a ton of videos and we will continue talking about it. But oh my gosh, I couldn't believe it. I'm like, I've been doing this for 6 years. I've never had anything like that happen.

A butt.

A butt bug.

Bug enema. Is that, would that be considered all natural?

Oh, God, no. I don't know what, that was just terrifying.

Different way to get protein, I'll tell you that right now.

Stop talking. It was not dead. Let me just say that, Peter. It was not dead yet. Like, ah.

Okay, but enemas are worth it. Don't let this story dissuade you. You just have to do your homework. You gotta prep. Everything needs to be proper before you do this job.

Oh gosh. Yeah, that is the chaos that is our lives.

Well, speaking about chaos, what has been going on this week? What are we talking about? The chaos of tornado— that's coming. So the limnado that occurs in, in our life, it's so random. It can touch down at any time. It really is a good description.

Yeah. And in episode 82, we talked, um, Kyle Willis's episode. We just got a ton of feedback of people saying how encouraging it was to them and how inspiring it was. Like, one of the things you mentioned is how he said if you don't wake up Monday morning feeling better than you did last Monday morning you haven't changed something, right? And my friend Stephen Groeters, he said the other day, he said, you won't feel a difference, the delta in your life, you won't feel a difference because you didn't create a difference. And you have to create a difference between wellness and unwellness, or habits versus operating out of default. And so we're going to be expanding just a little bit more on that because it's really, it's mindset.

It is.

It's all— it all comes down to mindset. And in episode 83 with Adrian Nolan, that interview ended up being really about worthiness. And that's been a really big part of your journey over this last year, of realizing if you don't feel worthy for whatever reason, how limiting that is.

Yeah.

And towards your success, towards your health, towards everything.

Yeah, and worthiness is a lie. Well, the lack of worthiness is a lie. So lies like to hide. Yeah, lies are very deceptive, right? We just— yes, they're deceptive. They're deceptive in nature, deceptive in energy, and they will hide themselves. So a good action can become a hiding place for a lie. Like, I'm going to take care of my family.

Oh yes.

And then it's— then it's—

and you justified not taking care of yourself because you were taking care of us.

It was a lie hidden within.

It was a— well, it had good intentions, but when you walk things out, there are usually ideologies and limiting beliefs that are creating the reality whether you want it or not.

And you remember me talking the other day about lies being like weeds. Oh yeah, I don't know if I mentioned that on there.

I don't know if you did. Give a short analogy.

Yeah, I'm out in the yard and I've got a lawn I'm working on, and I find a weed. And I find this weed that it just— it's the same color as the grass, it's very well camouflaged. But when I picked up the weed, there was actually a bare spot underneath, and it had actually taken over the area impeded anything from growing and camouflaged itself in there. But here's what's going to happen in the winter when the grass dies, the weed dies, and then I'll have a big bare spot in my lawn all winter long. It's destroying. If I actually can remove the weed, it allows the growth to really happen. It's deceptive, making it think there's not a hole there, but once I pull the weed out, I realize that was just a facade. It was just a lie saying that the grass was growing there.

Yeah, absolutely.

That's how lies work.

Yeah. And there's an author I had read a while back, her name's Susie Larson, in Fully Alive, and she says that storms reveal the lies we believe and the truth we need. And a storm, a tornado, does show you those areas where you have to keep making forward progress, and that's so hard to do because your life is being controlled by this outward force that takes time, energy, and money, and conscientious effort every single day to overcome. So I wanna just share this quote that I'd come across. It's not new, it's by Einstein, but I just keep chewing on it, and it's just been so relative to everything we've been talking about. And it says, "The intuitive mind is a sacred gift. The rational mind is a faithful servant. We have created a society that honors the servant and have forgotten the gift." And I just can't stop thinking about it because it's so relevant to what we've gone through within the Lyme community. And because what we— the feedback we're getting from listeners as we reach our 100th episode and 4 years into LymeVoice is We had someone contact us last week and she said, you know, I listen to the other Lyme podcast.

Our super fans.

Our super fans, yes, who contact us every once in a while. And she said, I listen to the other podcast, but, but they talk about illness and they don't really talk about healing as much. And with Fight, Heal, Live, Fight, Heal, Live, the format really focuses on the healing side of things and not the illness side. It really addresses the social-emotional side of things more than the intellectual side, in my opinion. Yeah, or the scientific side. And I, I think one big lesson that we continue to learn through this whole thing is just understanding that our lives don't fit the mold that other people's lives can fit anymore, and being okay with that, and being okay with it. The instability.

And yeah, because, you know, it's— there's pressure to, to function like normal people. I mean, even the calls you get for, uh, people wanting you to volunteer, uh, for, for school events. On one hand, we want to be available. We work from home in order to do that sort of thing. But at the same time, because of Lyme, because of the way that it has impacted everything, we have to keep functioning according to that, not according to the way the world works. And to be okay with that is really sometimes very challenging.

Yeah, you have to— on this journey, you have to develop an intuitive mind. And Stephen Groeters and I have talked about this a lot. He said, you know, as an engineer, he used to make decisions based on more mathematical, and because his brain doesn't work the same way He's had to learn about intuition and making judgments on feeling and intuition. And that's the exact same journey in so many ways that all of us have been on trying to make sense of this. So we are huge AGT fans. America's Got Talent. Seriously, my favorite show because it's always talking about determination, willpower, following your dreams, your heart, everything that— it's all about mindset.

And I love the way it's the unrecognized being recognized for the first time. Like, it's usually his fault. Like, the ones that really do get good on the show are the ones that have struggled to be— and I love that story— struggled to be recognized. And finally they get to the stage and the judges recognize their talent and the people recognize their talent and they finally get their voice to the world. I love it.

Yeah, so we want to bring you guys this song because I just heard it last night and then stayed up for several hours, and I just felt like it provided— it, it gave me an emotional understanding of really a lot of the trauma and stuff that we have been through over the last 15 months with this reinfection, the trauma we all go through. So we're going to play that for you guys now and then talk about it.

Benicio Bryant.

Slip away. Call the last day yesterday. Because since I was 10 years old, I've been thinking of ways how to make it real big, get a star in LA. But the closer I get, I got to face the truth. Underneath it all, I'm scared to lose it all. Everybody's trying to hide the scars. At times we gotta let it fall apart. And underneath it all, I'm scared to crash and fall. Everybody's trying to hide the scars. At times we gotta let it fall apart. Oh, I fall apart. You, me.

Fall apart as we fall apart.

Oh, I fall apart.

You, me fall apart as we fall apart underneath it all. Underneath it all, scared to crash and fall. Everybody's trying to hide the scars. At times we got to let it fall. I'm looking to the days I used to hear you say words that gave me so much Wow, I—

that song, we stopped and listened to it like 7 times in a row. Over and over again. That's an original song that this 14-year-old kid wrote, and he blew it out of the water. And it's so deep and it's so authentic. And, you know, the, the word— and then I listened to it like another 10 times after you went to bed, which is for me, like, when I hear a song that resonates as truth with me, I have a certain playlist, and I actually listen to those songs to write to. Because if I can hear something that is signaling truth, it— like, my brain feels safe to write. And so I've been trying to evaluate— I have not been on the mic a lot in the last year, and just trying to evaluate why that is exactly. And I obviously— there's a few reasons. I'm going through treatment, I have cognitive stuff happening, it's very— it's emotional. But it was so much more traumatic than that. It's been so traumatic having to re-engage. And in that song, he was saying like, what happened to those words that gave me so much faith? What happened to those words that were so encouraging? And as I was hearing him say that, I'm like, oh my God, like, my words were buried in the trauma.

Yeah.

Of one, my own reinfection But two, this Lyme community is very, very difficult to serve, and it, um, it takes an immense amount from you and doesn't necessarily give it back. So you have to become good at creating boundaries that meet your own needs and being your own source, being your own source of strength. Yeah, but as you have to, in order to heal from all this You have to, you have to face everything.

You have to let go.

You have to let go of things. You have to face things. You have to readjust your life.

You have, like Benicio said, you have to fall apart.

Yeah. And there's another line in there where he just talks about, um, you know, we all want to hide our scars and And to some extent, because this is a podcast about chronic illness, I haven't felt like I needed to hide those things. But the reality is, you know, one of the things that I've really been dealing with since being home from treatment and even before I left was just looking at everything through a negative lens. And you and I have talked about it a lot because I know I'm in fight or flight.

Is it the shoe that's gonna drop? Drop, kind of? Is that part of it?

It's part of it, like waiting for the other shoe to drop, or like, okay, well, this one thing is taken care of in our life, but this other thing isn't. And, um, having a large family and special needs and the economics of all that stuff is just— you are constantly juggling and feeling like you're coming up short to some extent.

Well, and it kind of makes sense. We live in fear right now. We live in fear because of your recent infection. And so the last time you were infected, all hell broke loose. We lost everything, almost. So when we're revisiting it again, yeah, it brings along a whole bunch of us. And here's the thing, is, is you don't just revisit it one time, you're like, oh, okay, I had this episode last, last year at this time, you're actively dealing with it. And in every— even if you're— even if you're healing from the first time, you're still actively dealing with it every day. Oh yeah, every day.

Oh yeah.

And, you know, from, uh, you know, from my point of view as the caretaker, and I, and I do— now I say this with understanding of the other side. But from the caretaker's perspective, I have at times, and whether this is good or right, but at times I've envied the fact that you didn't have a choice. You're sick and that is your— that is, you don't have a choice. You have to keep fighting. Me, I have to make the choice to keep fighting. I'm not— no matter where you go, Sarah, you will still have that sickness. I could leave this sickness. Yeah, I don't want to nor desire or anything, but I still have to make that choice to be here every day. And that's significant as the caretaker. Like, wouldn't you love to just leave your body at— right? Like, I mean, that's— and, you know, and, and Yeah, it's hard.

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.

We know that you guys love what we are doing here at LionVoice, and so many of you have reached out and want to help and support what we are doing.

Yep, we would love your help and support, and we have a way for you to do that at lionvoice.com. If you look on the right-hand side, you'll see a little, a little part where you can put in your donation of one time, or if you want to sign up and become one of our monthly partners, go to lionvoice.com and help support us. And I think the tornado is, is such a strong picture because we live in Tornado Alley in a sense. You never know—

oh gosh, yeah, you're right—

when the next tornado is gonna hit.

Let's talk about what happened last Saturday just as an example of— okay, there's— when you are going through active treatment, there is a lack of stability in your life because you can make plans that you inevitably will have to cancel. You will set appointments that you may not be able to meet. And like last Friday, I woke up and my brain did not work. My legs were not really working very well. I was very fatigued, winded, lack of cognitive function. Like, I was just going downhill.

You weren't understanding. I was trying to explain to you—

could not understand things.

Simple, simple instructions, you couldn't— you weren't jiving.

Yeah, so I had to cancel what I had planned for that day because I wasn't capable of doing it. And then even the next morning, it— here I thought I was feeling better. We were looking forward to going out with friends to an event that—

which we'd had to cancel twice on them already.

We had already canceled on them.

Yes, third time.

So we're really excited to do this, and we're excited and we wanted to be there. And a few hours into the night, I was done. Yeah, I didn't want to be done. My body was done, and that's when the night ended. Yeah, and it was an immense disappointment in a sense, because— yeah, for both of us. But it's so hard because you and I have spent hours talking about it since then. Like we come home from an event that did not go as planned because of something we couldn't plan. My brain was not working. I was not able to engage socially the way I want to and normally would do. And so instead of trying to be my best self and give an A+ performance when I'm normally like meeting and engaging with people, Aaron, you know, Aaron had to carry the weight of that, of that event.

Yeah, I need a wingman, and I do. If you haven't noticed, she finishes my sentence quite a bit. If you've listened to us, she is. So like, yeah, and, and that was hard for me too.

It was really hard for you because we ended up coming home earlier than expected, things, and then you were disappointed, frustrated at the situation.

At the situation, not at you. I knew exactly what happened. It wasn't your choice. You wanted to be there just as much as I did. But we're still both sitting there with nothing. Yeah, all the buildup and then nothing happened again. We had to cut the night short. It was lost again. Like, we're— we may even try to get with them a fourth time to redeem ourselves. But even that, like, that worries me too, because like, what is it going to take, another 4 times before—

oh.

So then you run the balance. You're like, okay, we can't overcommit, we have to pull back, like we're not ready.

But then even just to be brave enough to try to reschedule with them— I mean, we're probably gonna lose their friendship if we keep doing this. I mean, if we go another 4 times, right? Yeah, it's hard. And then to have the courage to try again and know that at any moment it can be derailed by the tornado, the The LimeNado.

Oh, so as we have walked through this over the last few months, and I have heard from so many of you guys— if you guys are going to contact me, send me a message. You can go— I'm starting to be on Instagram more, but send me a message on Facebook. Um, or if you do not send me a message and you send me a friend request on Facebook, I will not respond because I get a ton of fake people and maybe real people, but if you don't tell me who you are and why you want to be friends, I will not respond. But if you— I've heard from so many of you guys who have been reinfected or gone out of remission. I mean, it just happens that the trauma of going back in and facing the darkness and, and the emotional implications. And one of the things that I have spent a lot of time talking about is just It's not even about the trauma it causes you or the flakiness of your schedule or whatever. It's the people around you. It's you. My stuff impacts your schedule and our kids' schedule and all that. I feel like what I finally understood is like this reinfection, I feel like has, um I've lost my voice.

Yeah.

And I've lost my external voice anyways.

Yeah.

Because I don't want to say— I don't— I said it earlier in Kyle's episode 82, I don't know how to talk about this without feeling like a victim.

Right.

So, so then you don't, or—

yeah, nobody wants to feel like a victim. Why would you purposely put yourself in a victim mentality? If you do that, there's something wrong with you. You need to fix that, right? I mean, but like, to purposely— and that's what I'm saying too, even with our failures to meet our friends, I'm purposely putting myself in a place of failure, it feels like.

But, but you have to keep going, and you have to keep living, and you have to keep engaging and connecting, and that's part of what we want. And so I just realizing, you know, looking back for us over the last 15 months, just how much of a tornado it really has been. And, um, you know, 6 years ago when I went through treatment the first time, after that, a year and a half later, we started Vigor for Life, which is our production company, and we launched Lion Voice. And then Aaron produces and coaches people doing podcasts outside of this. Yeah, but really Lion Voice has been my primary task or job, my primary responsibilities work-wise. And we started that company because we knew that our life— we could not work. You could not go to work and be gone, and I couldn't go back into real estate cognitively and/or emotionally. But 6 years ago when we started the company, we started it because I could not walk and I could barely think. And the only thing that I felt like we had left was our words. I was like, okay, if we— we can talk.

Mm-hmm.

If we can monetize our words, which is in our bed and talk, right? I thought, gosh, even if I'm in bed and my legs don't work, I can always talk.

And then that got stolen.

I felt like this year I couldn't talk. And especially when I started going through treatment at Invita, I was used to their treatment protocols, and it, it is like wearing on you physically and cognitively. But I also did, as part of the treatment, which I recommend, um, I did 8 sessions of ketamine treatments, and we do have an upcoming interview on that. But the ketamine treatments, which kind of neutralize and reset your nervous system, I felt like literally muted me.

Yeah.

And I didn't— I knew it was happening, but I didn't fully realize it was happening. And I kept thinking, oh, it's a cognitive thing, or oh, you know, it's just because I'm in treatment. And then I'm like, nope. Like, it's— I feel like my voice was stolen, but it was externally. It was there internally, but not— I couldn't voice it.

I don't know that it was just the ketamine though. I mean, because I felt like you were like that before, before you left. I think it was treatment in general. Like, it just— like, you being reinfected. It's not the ketamine. It was you being reinfected that started stealing your voice. And I remember that frustration as I'm trying to figure out what's going on with you, is you weren't able to tell me.

Yeah, I was not articulating well or communicating well and still have trouble on certain days.

Yeah, which is very disconcerting for me because I need to know what's going on. And when I can't hear from you and you're not able to tell me and I just see the effects of what's happening, I don't know what it's directed at. You know, it can be, was it me that did it? Was it the disease? I don't know. It's, it's so It is a tornado that just comes in, lands, puts stress, destroys, mixes up, causes confusion in your life, just disarray.

Yeah, one of the other things I realized that was starting to happen, you know, even back a year ago was I could no longer identify myself as a sick person or as a Lyme. And I've been wrestling with this for a long time, but I make conscious choices every day not to look like someone who is sick, not to identify as someone who is sick. And I get up, um, almost every day, and I do my hair and I put makeup on and I put decent clothes on because I lived in my bathrobe because I had no other choice.

And, and you work from home, you don't have to be dressed nice.

I don't have to be dressed nice. Yeah, but I do it even on the weekends sometimes just because I want to not have that identity. And even at treatment I did it. And, you know, the whole time I was at treatment, I didn't look sick. But intentional. Yeah, it wasn't— it was intentional. And it's interesting because I've heard people—

not denial, intentional. That's the difference. That needs to be— I mean, you're not— you weren't denying that you didn't— you were sick. You were saying, because I'm sick, I'm dressing this way, I'm— and I'm going to act this way. There's— that's a— that's a different mindset, a different energy than denial. Denial ignores. You are making a healthy choice. You are making a healthy choice to dress, to look presented. That's, that's, that needs to be said.

And, you know, that just really hit me. I heard, I was heard someone talk, talking about from a transgender perspective. I mean, I've heard it for years. People say like, oh well, I don't belong in this body, or that feeling I don't identify as a male, or I don't identify as a female. And I never understood that. I wasn't like opposed to it, I just didn't understand it and hadn't experienced it. And then just recently, over the last few months, I've really, really been able to articulate and say, oh, that's, that's the same journey I've been on. This is my current reality right now because I can't control it. But this is not who I am. And if you have not seen our documentary Disappearing from Society, go to lionvoice.com. And Steven Groeder is in that episode. I keep quoting him. Um, in that episode he says, who I am is not here.

Yeah.

And we've all felt that depersonalization and like not feeling like we fit in these bodies that aren't aren't stable.

Yeah.

But I, you know, that was— these are huge epiphanies that have been coming over the months of while we've been going through this. On the outside, I have not been able to talk and articulate the way I've wanted to or used to be able to, but internally there's an immense amount of transformation and growth happening underneath, underneath. And it just takes time for that stuff to unfold and manifest.

Yeah, and I— and you are progressing through this. It's not that you sit here and all hope is lost. And, you know, it's, it's in these moments that we face it Or that you have a victory. So the tornado comes in.

Yeah, and sometimes the tornado is like 1 hour. Like, the day will have gone great, but I pushed myself physically and cognitively to get the work done that I needed to do. And then you're engaging with kids who are needing you to be an active listener and taking energy and all this stuff. And then it's like something happens and I'm emotionally spiraling for an hour or 2 hours, or—

yeah, I said, and I yell at everybody, go down in the storm cellar, mom's having a tornado. We all hide in the storm cellar while you do your tornado.

That is not how it happens. Let's go cry in my room.

I'm kidding. But, but the thing, I mean, I want people to understand that as we deal with this, as we— as you, you gain an understanding, and when you reveal the weed and pull it up, yeah, there's a bare spot in your lawn now, and it's ugly. The weed was kind of covering it up, but you can't ever get a full lawn unless you pull that weed and let the grass grow in. And I think that is what it is right now. It's that moment where we rip up the weed and we see the ugliness underneath. Yeah, where you see, like Benicio was saying, we all fall apart and you see what's underneath. Like, that is the moment where healing happens. That's where choices are made, where life happens.

Uh, you guys have heard me talk a lot about The Hero Within by Carol S. Pearson. Um, it's about your own hero's journey and developing, accessing different archetypes. And we all function like— Aaron and I grew up in very altruistic families. Both our families were in ministry. And so, and there's some really good things about that, um, when you are healthy and you— yeah, when you have something to give, you can meet other people's needs, um, but you cannot give what you don't have. And as a sick person, you don't have the same stability, the same resources, the same energy. You cannot give what you either want to give or used to be able to give. And it's not forever, but it is current.

And, and that has really hit home with this podcast because we have to give you guys the truth. And if we can't accept the truth that we're in, it's super hard to come to the mic and say, yeah, well, she says in Hero Within, she says every time we confront death in life, we confront a dragon.

And Jordan Peterson talks a lot. He wrote The 12 Rules for Life. He talks a lot about confronting the dragons. Confront the dragon, get the gold. That means confront whatever is stopping you, blocking you, harming you, and get the gold, which is the treasure, the wisdom, the reward, right? The living side of things. And so it really is a journey to wholeness. But those of us who are living with this just have a lot of weights that other people don't have. I mean, Kyle Willis said it, he's like, it's like training with a 200-pound weight, and it makes you— when you come through and hit another level of healing, it makes you really feel like you can conquer the world because you've already been through so much. But the emotional reality of that delta, that difference between what is and what is to come is huge. And there's a lot of emotions in that delta of trying to come to terms with where you're at, where you want to go, and then not having your illness and disability, or trying not to let that impact other people's lives.

Yeah.

That's part of, I think, one of the hardest parts about being a parent with this is you see that it takes resources.

You see that it takes resources from our household.

I mean, yeah, it's time, energy, and money over and over and over again that don't go into your kids.

Yeah, and we're asked to sacrifice again.

Yeah, you know, a lot of I think a lot of what we're going through— I'm 41, you're 45. We're watching a Norm Macdonald comedy routine, and he says, I woke up at 40 and I realized that everything I had believed in my life was wrong.

Everything.

Yeah. And to some extent, we've gone through a lot of that ourselves because, because of the amount of trauma that we've had in our lives, we have had to evaluate every belief every activity, every habit, and figure out, does not— does this work for us today? And does this get us where we want to be, right? Can we use this to overcome the bullshit that we have to deal with every single day just to keep the food stock— the fridge stocked, just to keep the house clean, just to keep everyone's medical needs met? When you have people who are struggling with their own little tiny Lyme tornadoes. Craziness.

Yeah. I think one of the harder things for me to do is I'm also dealing with my own set of issues. And, you know, the last— because there's PTSD, there's traumas, there's drama that I'm still dealing with. And when to find the time from— you know, there's times where roles have switched where it's my turn to be on the emotional.

Yeah, so this is something that we hear from you guys that we deal with as well, that whenever the primarily sick person is not doing well, um, then the healthy person comes in to help. And whether that's problem solve or make the next right one decision or schedule the next appointment or okay, what's What supplement can we order? Like, there's always these little steps. And yet—

so here's what happens though. Yeah, when you're fine, guess what happens to me?

Well, what happens is I fall apart for whatever, a few hours or a day, whatever. I'm emotionally spiraling, I am stable, and then you fall apart.

Well, because I— you put all my energy into getting you back, pull you back and then realize, I don't have anything to keep myself stable anymore.

And we know this because, um, our daughter has reactive attachment disorder, and, um, she is emotionally unstable, and it requires a lot of micromanaging to keep her upbeat and healthy with a happy heart. And we see that when she is downward spiraling, which for her can be days, it drains us because we have to put all this energy into keeping the ship right.

Yeah.

Into not letting the sink ship, not letting her negativity impact the entire household. And so we do that with her, and then you do that with me, and then at the— and you do it with me, and then at the end of the day, there's nothing left. And then you're falling apart, and we're like, golly. Yeah, we just like are taking turns bouncing this ping pong ball of trauma back and forth between each other.

But it has to be dealt with. That's the thing. It's been 6 years. Oh shoot, it's been a lot more now. Yeah, it's been a lot of years, and I'm stronger than most, but I am not that strong, and I still need to deal with my stuff because I have a pile of poop that needs to be cleaned, cleaned out. We need to clean the stalls. We need whatever. We need to clear the poop out because what happens is when it's quiet, the poop comes back.

And so how have you been doing that? How have you been clearing stuff out, that, um, the emotional chaos Exercise.

Acceptance. Acceptance, I think, has been one of the bigger things.

Forgiving yourself for being a horrible human being.

Mm-hmm.

A friend of ours says that, and it's become something we say very often, like when we find that we're just—

in a sarcastic manner, of course.

Yes, like, oh, can you forgive yourself for being a horrible person? Like, oh, you're not— you're human.

In reference, so like, yeah, I feel like, oh, I should have the right to to take my wife out to a cup— to a dinner and have dinner with a couple?

Yeah, that's not asking very much.

Am I a horrible human being for wanting that? Except when it doesn't happen, that's what I feel like. So that's what we're saying. I have to accept and forgive myself for having a desire, even though it's sarcastic to even think. But at the same time, when your wife is sitting there having an episode, How could I even possibly think about my own desires when she's physically, literally in pain? And then there's the torment of that.

Like, I have to literally forgive myself for, for having your own wants and needs and desires.

Golly, it ain't easy. And you're forgiving yourself for being a person. That's so screwed up for being terribly human, for being a human, for being hungry, for being tired, for being thirsty. Like, you have to forgive yourself for that? I don't know, it's hard. I, you know, it's just—

yeah, it's a— it's immense and I know that those of you listening, if you're still listening here 40-plus minutes into this interview, it's because you are all living the exact same realities. And I know it because we get messages from you guys saying like, oh my gosh, we got a message last week from Jennifer and she said, I just found your guys's podcast, or I found your podcast a couple years ago and I it has been a light at the end of the tunnel that wasn't another train coming. Like, Lion Voice has been a source of strength for her because it's insane, you guys. It's unfathomable. It's insane. It's horrendously difficult. And yet somehow through it, if you learn to be intuitive and to evaluate and to be self-disciplined, there are gifts There are gifts hidden in this, but you have to fight for them, you have to find them, and then you have to implement. You are responsible for creating the conditions in your life that enable you to heal. If that means you go out to treatment, you go out to treatment. If that means you need to move in with a relative so you can pay for treatment, that's what it means. And we have made really hard decisions for a lot of years. And for me, that's a huge thing, like, oh gosh, I need to put braces on my kids, but I also need to keep myself alive. Like, oh crap.

Yeah, but it's in those hard decisions, it's in those decisions of torment that you find freedom. Like, we can't change the fact that we're in this moment of torment, in this destructive cycle. But the only way to find freedom in that is to stand against it, face the music, accept it, and move with it. Move away from it. Yeah, sometimes that means moving with it. Fighting is a mindset, healing consists of choices, and living is the outcome. And then you get up and you do it again every day. Because you, my friend, are worth fighting for.

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. 'Kay, Lincoln?

'Kay.

The medical information on LymeVoice 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.