078 Adapt Or Die-Sarah & Aaron Sanchez

Well, what are— what is— tell us one thing you are really glad you did for this, for this time around versus last time.

Well, I feel like one of the most important things is that this was a proactive move for us.

Good call.

We did not wait till I was dying or completely disabled to actually act and do what needed to be done because we understand what is happening. We understand it does not get cheaper. It does not get easier. And I mean, it's just—

longer— the longer we were going to wait, the more expensive the treatment cost was going to be. One way or another, it was going to take— 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 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.

Lion Voice thanks Invita Medical for their continued support. Please reach them at 1-866-830-4576. Hey everybody, we really want to tell you about something that has changed our life.

Yes, our Kangen water machine has absolutely been a game changer.

Absolutely.

We had such a great response from episode Episode 64 goes into the details if you have not listened to it as far as why it's been so helpful and what it does. And basically it's alkaline water, but it's also antioxidant-rich. So 2 glasses of fresh water is equivalent to 5 pounds of blueberries, and it has been radical for us as a household.

Yeah, there's, there's so many more uses. We, I mean, we had to do a whole episode on it. But basically, go to myfreewaterstore.com to find out more information directly. Go to episode 64. You can actually hear Wade Holder talk about all the different app, uh, applications and benefits from it. And then when you are ready to purchase this machine, we are now distributors. So when you're ready, you call me at 505-681-1770. And there is financing available. If it wasn't for their financing options, we wouldn't have a machine. Call me, we'll talk through some of those options, and this is going to be a huge benefit to your life.

Yes, it is. And we will be talking extensively over this next year even about fasting and how powerful fasting can be with alkaline water.

Yeah, excellent. Water is key, people.

Change your water, change change your life.

Yep. Good morning, sweetie. Good morning, Lion Voice listeners. We have Sarah in Scottsdale currently at treatment, and today's episode is going to be just a quick catch-up on what has been going on with her, what's been going on with all of us. On my end as well, and we're gonna kind of catch up. So let's start off with, uh, how— what did you do this morning, babe?

Get a coffee enema, drank some dichotomous earth, um, swallowed some supplements. You know, more of the same, I guess.

I got all the kids out to school by themselves. Well, I was this close to getting them all out of the door where I didn't even have to drive them because we live in Woodland Park. It's freezing, and so it's finally not below freezing, and so I almost had them all out the door except Anadea like didn't realize that she had to walk, so I almost got them all, but I'm getting better as a single parent. Been working hard at it. And I went on a run today, knocked off 30 seconds off of my last run. How about that, huh?

Good job doing self-care, babe.

Mhm. Yeah, that's been very necessary. One of the things we knew that I had to do in order to keep going is do that self-care while you were gone, because we've never really operated like that before. This is, you know, you haven't.

I have.

Okay, you have. True. Yeah, that's true. Well, should we go back to the beginning? I actually was thinking about doing a, uh, before we go there, I was thinking about a new intro. Could be something like, welcome to Lime Voice. Where we are the chronic illness warriors battling it not once but twice. Too corny?

I don't know.

Well, if you listeners like it, you can send me positive notes or something. Anyway, let's go back to the beginning. I have a few questions for you. Well, before we go there, why— this is the official start of Season 4, Episode 1. 1, 1, 1, 1, 1, 1. How did you like the echo, Sarah? You're not enjoying the same amount of goofiness that I am this morning. Well, you're acting like you're fighting for your life over there or something. Okay, enough goofing around. What was I saying?

Oh, are we actually recording? Like, are you for real? Because I can't tell if— are we actually recording?

Yeah, we're giving the audience the raw look at what it's like for two people to go through treatment 750 miles away from each other.

Is that how far it is?

Uh, that's a good guess. I'm not sure, I'll have to look it up.

I thought, oh, you actually prepped and looked it up.

Well, I did one time, and that's the number I remember when I looked it up on the Google Maps. But it's a good 11-hour drive. That's what's more important now. You— okay, before we go there, you got reinfected last spring in Woodland Park, Colorado. It was probably a tick nymph. We never really even saw it, too small to even see. It was in the spring, the worst time of the year for getting infected. In fact, uh, March— oh no, May is, is Lyme Awareness Month. Yes, and that's coming up. So it was right about this time last year that you got bit, um, presented with a bullseye rash. Lucky us, because most people don't actually even see that. Went and got you antibiotics right away, uh, did 30 days of—

sent right away. I couldn't even get antibiotics right away, but that's right, took several weeks. It was a huge hassle.

That's right, we had to travel 3 and a half hours.

Yeah, almost 4 hours to find a physician who would write me a 30-day prescription. It was ridiculous.

Memorial Day weekend through Denver, it was, it was Horrible. We were in the car for 8 and a half, 12, 10 hours, something like that. I don't know, it was forever. Anyway, so now things progressed. Your body still is presenting with issues. We had some kidney stuff come up, cognitive stuff come up. Your hair was falling out. You ended up having to cut your hair this— before you went out to treatment, which it looks fantastic. If you guys haven't seen pictures, look up Lime Voice. Sarah is gorgeous and her hair is awesome. I like it. I like it a lot. I'm getting distracted by your beauty here, sweetie.

I did get hit on at the grocery store the other day.

Whoa!

I didn't tell you.

You didn't. How did that go?

I guess the haircut's working.

The dangling port out of your shirt didn't—

You know, I was wearing a dress. I don't think you could actually see my port at the time.

But okay, yeah, because one of the—

you point me to the health and beauty section and the guy was like, you don't need any beauty supplies, you're beautiful. I was like, thanks.

Oh, that's—

he goes, no, seriously. And then he came back and was like, hey, I don't know your name, do you want to have drinks? And I was like, uh Thanks. I appreciate it. You make me feel good because I just got my haircut and I don't know if I like it or not, but I don't think my husband would go for that.

Is that what you told him?

Yeah.

Oh yeah. How funny. Well, I guess it's to be expected.

Made me feel good.

Yeah, no, that's great. That's a positive thing that happened while you're at treatment. That's huge. Yeah, we'll take any positives of any sort.

That's true, man. That's true.

So you are currently at Scottsdale. What the first things you did is went and got your port, like I referred to earlier, and it's a sexy one.

Apparently, time I had a PowerPort, um, which you access under the skin, and this is, um called a— oh crap, I should know this— a permacath port, and, um, has like two little dingleberries on it. I'll put a picture on the website, but they're not dingleberries.

That's a horrible image to give the people. They're two little— I don't know— ports. That you can insert a needle into. Looked very clean and orderly and very nice. And it looks— no, it actually looks better than the last one did. Much cleaner and—

It's a lot less painful on a daily basis to you. Oh, good. Yeah, it's a lot better. I feel like I'm kind of getting— I've been here 2 weeks and I feel like I'm just kind of getting settled because I had my port put in. Um, I have a little 2-bedroom at a Marriott that has a shuttle, so if I am—

yes, tell us more about that. Well, actually, before you go there, you're in Scottsdale. I didn't say where you're at. Invita Medical getting treatment, and the place you're staying is how close to the treatment center?

It's about 4 miles from there, but they offer a shuttle, so— and I do have a car here, but in case I can't drive home. I would say at least last time I went to treatment, which was exactly 6 years ago, and that was treatment for chronic Lyme, whereas this is treatment for Lyme. Um, well, actually, I guess if you've already been fighting it for a year, it's, it's in the chronic stage.

Anything over 6 months, right?

Yeah, the CDC says anything over 6 months, and so I guess this is now chronic again. But yeah, just having a ton of kidney issues um, just very different issues this time around. My hair is falling out, um, I definitely am having hormone issues.

And yeah, we've noticed, especially once you got out there and started treatment, your emotional stability was taxed. Is that a polite way to say that? Meaning it was, it was really hard for you to be out there, and I felt like the treatment was also adding to that.

Every step of this has been hard.

Yeah.

Like every step.

Yeah.

I can't, you know, physically it's— I'm not in pain, but the emotional revisit—

I mean, because we're revisiting 6 years ago in so many ways. And so like we were talking about it, Sarah and I were talking about it earlier, and it, it was almost as if it was easier this time around because we knew what to expect, but it made it worse because we knew what to expect. And the fact that we're back here again was and is very, very hard, and it makes so many parts of it worse.

Oh my gosh. And I mean, honestly, I'm not dealing with anything that anyone else in the Lyme, chronic Lyme community isn't dealing with, because people go in and out of remission all the time. So it's not like this is unique, you know?

Right.

Follow Yolanda Foster, and she, you know, she's been in and out of remission a couple of times. And so this isn't, this isn't anything abnormal that most people deal with. Um, but God, that does not make— I don't know, it's harder. It's, it's hard to have, um, what fought so hard and implemented so much stuff. And then to be back here, um, to be back needing an immense amount of treatment and care is just really, really emotionally difficult. Oh my God, understatement of the year.

Yeah, yeah, the emotionally The emotional tax of it is, is way harder than both I think you and I would have even understood until we were in it, until we— until that moment when I drove away and dropped you off at your parents' house. So what we actually had done is I dropped off Sarah in Albuquerque. We drove up Colorado, down Albuquerque, and, uh, she got her mom's vehicle and then took that to Phoenix. And one of the reasons that we really wanted her to be at this hotel is that because of that shuttle and how— I mean, last time you were out there, you had someone stay with you 24/7. You're more— you're a lot stronger this time where you're able to function. But we did know that once you got into treatment, there would be days at the end of the treatment and you did not feel like you could drive cognitively or even physically. So this was a really important decision. And even like Uber, okay, so when we got your port put in, we were trying to see if we could get an Uber ride for you. But even that's not really safe because you're—

Yeah, I was too disoriented. They wouldn't— I had an Uber driver and they wouldn't let me leave with an Uber driver because I was too disoriented. I wasn't standing on my own and Um, you know, that was a good call on their part because I don't remember most of that day. And I ended up having a friend come and pick me up and—

Right. And that was super hard for me. I was just pacing the floors on this end because I was like, I wanted a, a, uh, a sweetie cam.

I do feel like I'm being electronically babysat. I put that on Facebook the other day, like which I get, but I have a lot of people emotionally and electronically babysitting me at the moment.

Is that overwhelming?

Yeah, at times.

Yeah, that makes sense.

Yeah, it is, and I understand it, and these people all have a right to be asking and texting and calling, and of course I would do the same. So it's not, it's absolutely a good thing, but it's a lot. And I don't, cognitively, I feel like I'm struggling.

Right. Well, and I think you make a good point because people that are not sick don't understand. I mean, even, I know your family is good intention and the people that are texting you are good, you know, and they understand, But some people don't understand that those texts can be taxing for a sick person. A normal person, that isn't a big deal. And normal people don't understand why you can't return that call, why you can't return that text.

And I mean, we've been at this so freaking long, that's not the case. Like, everyone—

not with our family, but I mean, it is a good point for those out there listening. That is to give themselves permission that in this scenario where you have a lot of people checking into you, calling you, texting you, wanting to know how it's going and you don't have really an answer. I mean, it's the same, it's been the same for a decade. What other answer do you want me to give? You know, I mean, it's, that's a hard place to be in and it's okay to struggle with that is my point. I think people can give themself a little grace and say, it's okay if I don't return and it— a text. And if that person is so shallow that they're going to lose a friendship because of a non-return text, then maybe that shouldn't be.

So far past that point in our lives and our relationships, like, we've weeded stuff out years and years ago, and we had to.

It was so necessary. You can't— we have so much We only have so many spoons to deal with every day, and we have these tasks like getting through treatment, taking care of kids. You have to eliminate those, those people that are taking your spoons, taking your energy. You just can't.

I mean, and people texting definitely doesn't take my energy. I just can't always respond and can't, you know, and that's okay.

I'm, I'm okay with that and Yeah, and that's actually, to be totally honest, that's been hard for me because like I want your full attention because I'm very, very concerned about you, right? And then when I see other people, you know, you not— you being too tired to call me because you were talking to other people, I've had to, you know, get over that, you know. I've had to, but I mean, it's not easy either. I'm— I don't know.

No, that's the thing. There's so— I think that's the thing that's been so hard is there are so many losses. There are so many losses on so many levels to where even, okay, X amount of resources going into me being here, so there's less resources for stuff at home, and there those, I, you're, no one else, your life gets paused because you can't think or because your brain isn't working or whatever is happening. And everyone else's life is still going on, you know, right? Kids are still getting older, they're still having birthday parties. Like two of Nate's good friends My son Nate just turned 15 this week, and he had a party, and two of the moms of his two good friends threw him a birthday party. That was one of the things that I had asked them to do. And I'm so, so thankful that he had that and we have that community. But those are losses. Like, I could look at it and be like, okay, great. Someone else met his needs, and that's— I'm so thankful for that.

Yeah, I was thinking the same thing yesterday, and I was, I was same thought process. I was so happy that he got to go there and, and got— but like, the fact that you and I couldn't celebrate it with him was hard.

Yeah, it just sucks.

And, and I'm going to take him, him and his buddies out camping this weekend, so it's not going to be a total loss on my part. But, you know, for you—

well, and I feel like too, the thing, we had to divide and conquer for so many years, right? You know, I spent so many years at the ER by myself because you were home with the kids.

Yeah.

And then in a sense, because we work from home and because we've changed our entire lives to accommodate the complexities of this illness and both of us be working from home and just different things, like we've gotten to do a lot of stuff together and that's been very healing for our relationship.

And yeah, before, before you left, we would be like, hey, I need to go to the grocery store to grab a— and it's a mile away. To grab a loaf of bread. You want to come? Yeah.

Okay. I know. We're like, what can we do? How can we spend as much time together? But, and so—

The only things we didn't share was the enema. Yeah. That was your private time.

Yeah.

What were you saying?

I don't know. It's just lost. There's, there's, I'm very thankful to be here. But it's a burden financially. It's a necessary burden, but it's a burden.

And it's huge.

And then there's losses on other levels. And, you know, I think for me, it's— I don't know, it literally has been every step of this. Back, back in a sense. It feels like I'm just going backwards. Um, and like with anything, like you, with Lyme, you feel worse before you feel better most of the time. And so that's, you know, um, that's what I'm dealing with. And I haven't— even though I haven't been in pain and stuff, I've felt physically strong and have been able to exercise. And then in January, I just had a bout over about 7 to 10 days where I had a ton of atrophy and I lost like my hamstrings, my abs, my biceps, like just from the knees up. I feel like I lost 6 pounds of muscle instantly. And that has only happened 2 other times. And it was when I was very, very sick. And that was when we made the decision that I was going to come back out here because something's very wrong that we have not been able to figure out. You, you know, A healthy person does not waste away. And that's, you know, they refer to Lyme as like a wasting disease, and you can see it on people. I remember coming to Invita the very first time and seeing all the women with their thin arms, their thin atrophied arms, and like sunken faces. And it was encouraging to me because I'm like, oh yeah, that's why I look the way I look. That's why I can't finish a conversation. Like, I saw myself in the other patients. And because I hadn't known a lot of people with Lyme, it was healing to me to be like, oh, I'm not just a wuss. Like, this is— this is just the illness, what it does to you. But having to go back into this environment has been really hard. Emotionally. Um, yeah, and I didn't mean to sit here and cry.

Oh, it's okay. Okay, let's, let's change the subject. One of the things— what did you say? Oh God. Oh, I got this, babe. Let me handle this part of it. One of the things that, uh, we have this time that we didn't last time is a Kagan water machine. And we bought this, um, here in Woodland Park, what, 6 months ago, 8 months ago, when you got reinfected the first time? Or when you got reinfected last spring, we got this, and it really helped your cognitive skills. We both have noticed that when we take the certain 11.5 pH balanced water that like our, our cognitive skills like improve drastically. And so it's been huge for you. And we actually disconnected it and loaded it in the car, drove it down to Phoenix, and you're using it there. And it's been huge for you. Yes.

Oh, yeah. Yeah. Huge.

Yeah. So just a little plug for Kagan Water Machines. If you want to know more about that, call me up. My number, 505-681-1770. And I'm currently working on a website that'll have that information, and that information could be on the show notes. If it's not there, I didn't get it done in time, but that's what I'm working on.

So yeah, and actually one of the things, um, I didn't get it hooked up right away, or I did and then it was blowing the fuse, and so I didn't have it right about 3 days and I just like felt thirsty. The Arizona water here is terrible. But the, the 11:5, taking the 11:5 in the morning, I take mine with Plexus and it just is a huge cognitive wake-up.

Right. Yeah.

And, and I started, you know, about 4 days in or I, I got it rehooked up on the 4th day, but You know, one of the things that really helps me with is neuropathy.

Right.

And by day 3, I was definitely feeling the neuropathy in my fingers.

Wow.

I know, it's crazy.

I'm having it. And the reason it kept blowing was it was overpowering the outlet, right?

Yeah, it was on the, I don't know, it was on the wrong outlet.

And it's a hotel, so it probably is not great.

I was thinking like, I cannot imagine what the housekeepers think I'm like in this little 2-bedroom studio thing, right? And they always make comments, you know, they come by in the morning or whatever and I'm always cooking, and then in the evenings I'm cooking. And so they're probably like, what is this crazy lady? I brought like pictures, I brought like, I don't know, 15 family photos, and I like put up pictures, and I have a couple of plants, and I've got my Kangen water machine, I brought my juicer, I have a diffuser, uh salt lamp, Himalayan salt lamp, and, and then I have my guest— the second room that people, my family and Aaron and different people are going to start coming next week. And so I have a two-bedroom and I have my enema bucket set up in there and I just leave it up in there on the bed.

The enema room.

The enema room. They're probably like, what is happening here? Like, I have supplements all over the kitchen. Oh, man.

Well, they may have seen it before.

Yeah, that's true. There's a lot of people here who are at treatment, so—

yeah, yeah. Didn't you say there was a whole family of like 14, um, Amish hanging out at the pool?

There's— oh yeah, I should tell that story. Oh man, so I, uh, I, um, bought a two-piece. I rarely ever have even worn a two-piece. I will like occasionally on vacation or something, but not really. But I bought a two-piece 'cause I've been trying to sit out at the pool after I come home from treatment. It's been a, I really can't exercise. I am going on walks, but it's kind of been my disconnect and kind of recharge and let the nausea settle before I come and cook dinner and that sort of stuff.

Yeah, it's a real pretty pool.

Yeah, it's fine. And so I'm wearing a two-piece and and there's a ton of Amish people staying at the hotel because the Amish community is getting hit crazy hard because they're an agricultural community.

Yeah, yeah, yeah.

Oh gosh, yeah. So there's, there's just a ton, and I've gotten to talk to them a little. Just fascinating listening to, you know, their lives and different stuff. But on, on Sunday, I had been sick. It was Easter weekend, and I thought I was gonna hang out by the pool and maybe go see some friends, and I didn't do anything. I was herxing all weekend. I barely got off the couch until Sunday afternoon, and I'm sitting out there in my two-piece listening to my music and my very modern short haircut. And eventually I'm surrounded by like 15 Amish people and their kids swimming in their like full dresses and outfits and like—

right, from, from, from 1919 outfits kind of deal.

Oh, totally suspenders. Even the little kids had shirts on, you know, they're floating in their little floaties. And I felt like such a heathen. Oh my gosh, with your ports dangling, with my port dangling, the scantily clad heathen sitting by the pool. I was like, this is hilarious. Yeah.

Well, what are— what is— tell us one thing you are really glad you did for this, for this time around versus last time.

Well, I feel like one of the most important things is that this was a proactive move for us.

Good call.

We did not wait till I was dying or completely disabled to actually act and do what needed to be done because we understand what is happening. We understand it does not get cheaper, it does not get easier. And I mean, it's the longer—

the longer we were going to wait, the more expensive the treatment cost was going to be. One way or another, it was going to take.

Yeah. Um, you know, I've had— I shared with Aaron earlier and some other people, I ended up having a moment in the clinic that just was so traumatizing for me. There was a young lady in the waiting room. When you go into Invita, you sit in the lobby and then they call you back and they do your vitals and then they assign you to a room for the day and you sit there with your IV pole and hang out for 4 or 5 hours every day. And there was a young lady in a wheelchair, real pretty lady, beautiful hair, and in a wheelchair and her hands were curled and her legs obviously had severe atrophy and she couldn't like zip her own purse or do anything. And so I was just sitting there chatting with her and we realized that we had actually spoke on the phone several months earlier. I had actually known her through Facebook and different things. So I was like, oh my gosh. And first of all, it bugged me that my brain didn't remember. And then I had to go look it up in my notebook. You know, that scared me 'cause I'm like, ah, how do you forget a whole conversation? And I hadn't, it was in my notebook, but You know, that was a—

in that moment, I mean, you were going through treatment yourself, so your brain wasn't quite— yeah, but you talk to a lot of people. I do talk to a lot of people, so it's okay to forget one or two conversations.

Yeah, and it was out of context, and there were some other things, but that stuff doesn't happen when I'm cognitively functioning well. And so, you know, for me, I'm like, ah, okay, I don't like feeling that way. I don't like feeling behind, and, you know But anyway, she— we end up going back and we had the same nurse for our vitals. And so we were together in the little vital vitals room and she ended up needing to use the restroom and she's in a wheelchair. And she had had a bladder surgery like so many people, like they have all these internal issues. And so she had already had a bladder surgery and couldn't control her bladder. And So she's sitting in a wheelchair and she has this beautiful accent and, you know, she says, I need help and I, you know, please hurry. It's— I can't stop it if it happens. And it was so traumatic watching her, in a sense, plead for some simple help. Right. She needed help getting into a private bathroom and her Her boyfriend was there, the nurse was there, everyone was doing everything they knew to do. It was just a matter of it took 2 or 3 minutes to make that happen, to get her private space. And I'm watching it and she is just pleading for help in this hallway, and there was nothing that I could have done.

Yeah, it was nobody's fault that this situation was happening, including her, right?

And yet, like, hearing her plead Uh, the thing that just hit me, which is nothing new, but it's just the immense loss of dignity that comes with this illness. Because the other thing that I was thinking with her is, I know, I believe that she's in one of the best— she now has access to some of the best care for Lyme disease that exists. In my opinion, this just from what I've observed. And so I'm thinking, gosh, she's in one of the best situations that she could possibly be in to actually have the potential to heal and get her life back. And yet there's still so much loss of dignity.

Yeah. Yeah.

And she's— I know for every one of her sitting in a place where she's about to receive good care, There's hundreds and thousands of people who are alone in the ER not receiving care, who are alone at home, unable to get up and use the restroom by themselves, who don't have a full-time aide. Who— I mean, I was there. We— I was there not having my basic needs met because you were taking care of kids and I was trying to take care of myself. And then I could no longer do that.

Yeah.

And, and so I just— for me, the enormity comes from just the magnitude of losses that unfold over and over again in people's lives, financially, emotionally, physically, relationally. Holy geez. Like, what?

Yeah.

Oh my gosh.

Yeah.

Oh my gosh. It— there's a Chinese medicine doctor, Dr. Lim, at Invita, who I've met with a couple times. You meet with different doctors and different chiropractors and different stuff throughout, throughout your stay. And, um, it's funny because anyone who listens to Lyme Voice on a regular basis knows we mostly talk about mindset. We don't talk about Lyme a whole lot. We talk about mindset. And her first session with me, she just sat there and was like, this is all about mindset and blah, blah, blah, blah, blah. And, you know, she's feeding it to me and I'm like, I know all this. Yeah, I say all this, I tell other people this stuff. And yet it's still one of the things she told me. She was like, you have too much on your plate. Because I'm, I'm working. I have to work. I have to keep working. I have to then spend 5 or 6 hours doing treatment, and then, you know, the rest of life fits in somewhere.

And try to talk to your lonely husband.

Yeah, right.

Yeah, no, I know it's a lot, and it's hard for on my end as well because I know all that's going on. But yet I still have my own needs that I want, desire, right? And I have to lay that to the side repeatedly again, right? It's, you know, and I'm not complaining per se, but I am complaining. Like, it sucks.

Well, let's just go back and talk about that because when I got here, you know, you are wanting to You're stressed because I'm by myself and you want to have a sweetie cam on me to know that I'm okay and I'm safe. Because like even the other day I had left my phone in Denver and we had to turn around and drive to Denver, you know, which is a 2-hour drive right after we had been there the day before. And I was just gonna go. I said, gosh, I'll just go by myself. And you were like, no, I don't want you to go by yourself. Like, it scares me when you're not doing well. For you to be out on the road by yourself.

Right.

Because if something goes wrong, I don't problem solve the same way when my brain is working. When my brain is not working, I do get overwhelmed by things.

And that's so frustrating for you too, because I mean, if you listen to this podcast, you know that Sarah is a capable, smart person, But when she can't figure out what left or right, that's so frustrating for me. I'm frustrated for you. I'm frustrated by the situation. You're frustrated by it. And then— and that has been like a huge learning curve for us is to preemptively— I think the word for today, like they do on Sesame Street, right? The word for today is preemptive. Like, because we— like, even in that scenario, rather— and, and before, I would have let you just go. I might have been a little bugged about the fact that you had to go do that, and I would have just stayed home and been bugged while you went out and did that. You probably would have got confused. It would have been a terrible experience. Instead, I preemptively decided not to get frustrated, not to get annoyed by it. Yes, was I— was I happy to do an extra 4-hour trip to Denver and back? No. But I didn't go to the anger, to the frustration, and we just got it done instead. I mean, it was gonna have to happen anyway. You had to have your phone.

Yeah.

And I think— what is that, maturity? Maybe. I don't know.

Yeah, I don't know. I mean, it has— you do, you do handle things differently than you used to.

Oh yeah. I mean, you have to adapt or die.

Adapt or die. We were watching Moneyball and the coach— I sent Aaron a screenshot of the coach basically saying adapt or die. And I was like, yep, that's adapt or die, man. That's literally what it comes down to.

Yeah, you have to be a bigger person in order to be a bigger person. You have to be a bigger person. You have to walk the walk. You have to make moves. You have to preemptively choose not to be upset and to just get it done because it's gonna have to happen anyway. So, and it was not like, I'm preaching to myself right now. I'm not a champion in this cause at all.

I know, we both are.

'Cause I mean, like, I, when I, okay, so when we drove down, I don't know if I told you this, After I was driving away, so I drove Sarah down to Albuquerque, then slept the night, turned around, came back the next. So that morning happened to be my birthday, but it also was, you know, as I'm driving away, you know, we got to have breakfast together and stuff like that, and it was fun. But as I was driving away, I just sobbed. I just sobbed like all the way out of town, you know, and it was that insult that you were talking about earlier. And it's been, it's been really hard for me.

And then, yeah, what happens? Let's talk about this because I think it's important.

Chaos bringing more chaos.

Chaos breeds chaos. I mean, it does. And so you throw in a bunch of transitions, you throw in financial pressures, you throw in all the baggage from all these years of loss and this illness in a sense controlling your world. And I think one of the most interesting things having to go through this whole thing is we can evaluate like, okay, here's how we handled it last time, here's how we handled the communication. So let's let's do this better, right? Okay, this isn't our first rodeo. Let's make this work for us to the best of our ability. But one of the things I think that's interesting and worth talking about that couples experience all the time is even one of the— as I'm leaving, we work from home and our kids were all home on spring break. And so if I have work to do or I need to write or think, I will turn the fan on. And, um, I do that so I don't hear all the kids bickering and fighting and screaming or whatever they're doing.

And, um, they're not always doing that. Sometimes they're playing.

You're right, oftentimes they are just playing.

They are pretty good at the, at the latter, you said though.

But just to drown out the sound so I can think or write, um, I had the fan running for several hours and you came in and said I hate the sound of that fan. Like, and I said, I'm using it to drown out the noise. And you said, because you were frustrated just by the circumstance, not at me— yep, you were frustrated at the circumstance— you snapped at me and said, yeah. And I was part of what was being drowned out, right?

Thank you for airing that on our show without asking me first, but go for it.

We could delete it.

It's out there.

And I was like, whoa, hold on. I wasn't drowning you out. I was trying back 6 years ago, I was drowning out the fact that every time I heard a noise, it caused me to twitch or have a seizure.

Right.

Like, that's what I was drowning out. And the reality, and I have said this and I will continue to say it, because it's true, is that the illness takes up so much space in your life that there is no grace left for you as a person or a human being to have a bad day, to have to react to, because your bad days, your grace has already been used up. And so that comment that you made, like, just revealed immense amount of hurt on your part. But then it also triggered immense hurt for me on my part because I'm like, this is so unfair, right? It's so unfair that I don't get to have a bad day because I've had 10 years of bad days because of this illness. That's immense.

And, and yet it's overwhelming.

Yeah. And so then you bring that, you know, and we talked through that, we addressed that, we talked through that over that day and, you know, wrestled through, well, here's how I was feeling and here's how I was feeling, and both of us have hurt feelings and it kind of doesn't matter because you got to go on and keep pushing forward. But then when I— that was right before I came out. And then I get out here and I'm, one, disoriented, two, overwhelmed. I'm dealing with a ton of cognitive changes. I am driving in a city I'm not familiar with, which is just taxing on my brain and emotionally. And then you, feeling all of this, want more of my time and attention because you're feeling insecure or um, worried, which are all normal, healthy things. But then you need from me what I'm unable to give. You need my time and attention in a focused— or what felt like a focused manner, and I did not have that to give to you. And the other thing that happened was you were emotionally unstable. So when you're crying on the phone, or when you're upset on the phone, because this was one of the conversations we had had last time I went to treatment. We barely spoke. Yeah, you came out and visited me for a week, um, or for 5 days, but we barely spoke on the phone because what it felt like to me was you were just complaining to me every time we got on the phone about how hard it was. Yeah, and after a few weeks, um, of me crying every time we were on the phone I just knew that I could not stay on the phone and talk to you for no reason. Like, I didn't have the emotional capability to deal with what you were dealing with and what I was dealing with. So we've talked about this in advance, like, okay, we're not gonna— Aaron's gonna deal with stuff at home and I'm gonna try to deal with stuff at treatment, and we're not gonna pour out our crap onto each other, right? I mean, is that kind of what the consensus was?

Yeah, I mean, it should be said that like on my end too, I was dealing with a pretty big crisis with one of our kids, and we won't— we don't need to go in the details of it, but the matter of, you know, that was immediately the day I got back, this huge crisis that would normally rock any family, any dad, you know, and I'm dealing with it alone. I'm pissed about that. Not at you, of course, just pissed. It's just not fair. Once again, I'm having to deal— and this is a huge— this event is that I'm dealing with now is, is, is life-changing. It's, it's big. And you feel the guilt of that, of me having to deal with it on my own.

Right?

You feel the worry of, of what's happening on— happening as well. So it didn't— yeah, it was— what did I say? It's super hard acting as if your life is not falling apart when it's falling apart. Like, you know, so I mean, that was our first few conversations, is like trying to act like the world is not falling apart. I'm not that good of an actor.

Neither of us are. No. And that— but then, so for me, I'm like, okay, I don't have anything to give, I am emotionally spent, and then you're wanting to talk about emotionally difficult things. And I'm like— and essentially you didn't actually have a lot to say, you were just kind of on the phone being emotional and I couldn't deal with that. And so I'm like, hey, I'm happy to talk, but if you have something to say, call me and I will listen. But I can't just sit here on the phone and be sad with you. Like, I don't have the strength to do that. And this is what we talked about, like, you not doing this to me and me not doing this to you. It's super— it's super unfair. Fair. And then you were bugged at me for not being available, and I'm like, God, we are right back where we were 6 years ago. You know, all those years of you needing something from me that I was not capable of giving in that moment because I didn't have the cognitive— I did— I wasn't cognitively available and I wasn't emotionally available. And that's really hard because The, you know, even with our kids, even, you know, we've made decisions so that our kids' needs were met to the best of our ability. And we rented a house for 4 years right by my parents so that if I was down and out, which I was for a lot of years, they had parental support and people, you know, in their lives and meeting their needs. And, and yet there's still immense losses when years of your life are going by and you're in and out of the ER. You know, you're just— who I am as a parent has been so diminished. By this illness. And Steven Grodders said it on one of the interviews. He said, when you want to live a big life and in a sense this illness either takes it away or delays it, you know, depends how you look at it. It's immense. It is absolutely immense. And I, I just don't know that. I just think there's no easy answers for everyone wherever they're at, whether you're deciding what treatments you can afford or not afford and how much debt to go into or whatever. It's a lot.

Yeah. And you're right, there is no easy answers. But there is answers, right? I mean, we have— we know what we need to do. We know that we can't revert back to that, and we quickly adjusted. We talked about it, we talked it through. I, I was able to express myself. You were able to express yourself. We didn't take offense to that, right?

One of the funny things, the show The Santa Clarita Diet Yeah, it's on Netflix. Um, oh my gosh, we— okay, she becomes a zombie, right? She becomes— she's like one of the undead. And, um, it is absolutely hilarious because it's this couple who has been married since high school, or got married right out of high school, so they've been together for like 20 years, which is Aaron and I. And, um, she turns into a zombie and has to start eating people in order to stay alive. And so they're doing insane stuff like murdering people and like justifying it, and all this stuff is happening. So then they just start murdering bad, mean people. Okay, but what is so hilarious— if you want to get a good laugh, watch this show as a limey, because everything they're going through when they're like, this is insane, like, I can't believe this is our lives— we were dying laughing, right? Yeah, like, oh my gosh, this is life with Lyme. You're like, what is this insanity? And the husband who was like, okay, do Do I leave her? Do I like, what do I do? He like comes to this, he's like, okay babe, we're like, we're in it together. If we gotta kill people to keep you alive, we'll kill people and da da da da da. And yet there's all this chaos and frustration in their life. And so they're constantly looking at each other and being like, I'm really frustrated, not at you, at the situation. I'm really frustrated at the situation, but not you specifically, even though I'm yelling at you. And we're like, oh my gosh, how many times have we done that? I'm so frustrated at this situation. Not you, but you're the only person here who can help me figure it out. Like, oh, what the hell? It's just—

it is. I was watching Walking Dead while you were gone, and there was an episode in there, and I, I, I've— it's— how long has that show been on? 9 years, something like that? I don't know why I like it. Like, I'm all about positive thoughts and you shouldn't dwell on the negative too much, but here I'm watching Walking Dead. Whatever. I'm not going to apologize for it. But the reason I like it, it's this incredible struggle that these people are uniting together and facing together. And I feel like the same. The whole world is against us. The whole world of undead are coming against us, and you, you have to adapt or die. You have to come together or you will die. It will eat you. It will take you. And that's exactly what, you know, and so I, I— it's a TV show, I get it. It's not the meaning of life, but I, I like it because of that point. Just kind of like the Santa Clarita Diet. It's just the struggle and the unity of people against the world, and I identify with it. And it— maybe it's not the best for me, but oh geez, I'm not shooting up heroin or anything, so that's pretty good.

It's your guilty pleasure. It's all right, I give you permission, babe.

Oh, thanks.

Adapt or die, man. Freaking sucks. I don't know. But yeah, and I told Aaron, like, I've written some blog posts that I haven't posted because I feel like I have a very skeptical— not skeptical, but I, I don't know. I, I feel like I don't have a lot to say.

It's a little jaded right now, and I don't say that negatively, or, or critically, rather. But yeah, you're in the midst of it. So, you know, I want to keep doing these type of interviews for people, uh, to start out season 1, um, season 4, episode 1. But, and, and keep people up to date. And I think, you know, these conversations I think are really helpful. We've heard that from hundreds of our listeners who have said when you and Aaron go back or go back and forth and discuss the issues, that's where like we really identify. So happy to do it. It's actually a little bit easier in some senses, and especially, well, because now we don't have to schedule interviews with people. We can just, you and I can sit down and do this at your leisure. Makes it a little more flexible. We can just record her.

Leisure is not a word that is in my vocabulary at this point.

Wrong word, yes.

I have to fricking fit everything in. There's no leisure activities happening. I'm not on vacation.

At your convenience?

Yes. Convenience? No. Okay, we're on the wrong track here, man.

Stay positive, sweetie. Come on. All right, are we gonna— we're— how long have we been talking?

Adapt or die. I know.

Uh, hey, all y'all, if you haven't done so, Go to our— on iTunes and give us a rating and make sure you subscribe. We'll be doing these updates. Like I said, we're going to be doing them at our convenience, for lack of a better word. So they're going to be a little intermittent, and then if you subscribe, you'll get the latest updates going on. Anyway, thanks for being with us today. Did we have any more to talk about? You're at treatment. Oh, well, what—

be continued.

What, uh, I think— oh yeah, what treatments have you been taking this last week? IRADs?

Um, I've been mostly doing detox, so I'm doing hydrogen peroxide, vitamins. Every other day I do either hydrogen peroxide and vitamin C, plus, um, pulsated antibiotics, plus, um, detox and stuff. And then I just am starting IRAD And IRAD is the insulin— ah, I have said this word so many times. IRAD, insulin something. It allows— Look it up on Google. —medication across the blood-brain barrier. And it absolutely restored my brain in remarkable ways. And that's really one of the bigger reasons why I'm here is because my cognitive function has been so impaired, I feel like, the last 6 months. So I'm just starting those now, and I'm really excited about that because I'm definitely having a lot of peripheral issues with my vision and spatial recognition and stuff.

So, yeah, you're not— you're, you're in the feeling worse before you feeling better. All right.

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. 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.