000 Our Big Why

From the creators of Lyme Voice and Disappearing from Society comes a brilliantly simple idea, but this time it comes as a book. Imagine a world in which birds can talk like people. You'll get a bird's-eye view of life with Lyme disease as one bird family must unite to overcome the obstacles of life with Lyme disease. Guaranteed to make you laugh and cry. Written in a way that helps you articulate the losses you are experiencing as a household while simultaneously empowering you to keep fighting. Little Bite, Big Trouble is available today at Amazon.com.

Congratulations, Lyme fighter. Today you had the courage to open your eyes and face another day. Welcome to Lyme Voice. We're your hosts, Aaron and Sarah Satchis. This show's purpose is to help you put the puzzle pieces of Lyme into place. Each episode is designed to inspire, to educate, and to encourage you on your Lyme journey to wellness. Together, We will fight together, we will heal, and together we will live. Our episode 000, our big why or about us episode.

Yeah, we are your hosts Aaron and Sarah Sanchez, and yeah, we're super happy to have all of you guys listening and I'm really excited to convey really our big why of why we chose to just push forward with the podcast, to develop a website, and I feel like we've been chewing on it for the last 18 months as I've continued to recover.

Yeah, we started making these plans— well, you did, to your credit. Like, we started knowing that when we make it through this, either Even though we didn't know we were gonna make it through this, we started realizing that when we make it through this, we are going to tell others. We're not gonna let anybody else be left behind like we felt. And it wasn't, not trying to blame any one person, but there was things that those around us did not know and they didn't understand. And we realized at that moment, if we can communicate this to other family members, to other Lyme's patients, this is happening and this is how we dealt with it and this is what we wish someone would have told us. That's our reason, that's our big why behind this whole thing, is that we want to equip you so that you can learn from our mistakes and be supported in that way. And we're also going to be developing lots of other methods as we find solutions to them of how to survive with Lyme.

Yeah, and obviously Lyme Voice is one aspect of that, but, um, really this all— I, I remember telling a friend multiple times, like, if I ever survive this thing, whatever it is, like, if the whole theory of whatever doesn't kill you makes you stronger is accurate, if I make it through this, I'm going to be super, super strong because it's just been there's so much suffering and so much loss.

And well, and even just to add to that, even last night we were just talking as we were talking about recording this and kind of prepping a little bit. We were just talking about how Lyme has made us into stronger people ultimately because ultimately because we survived, we're now stronger because we know how to do that. Meaning I feel like that has been great prep for because now we're stronger. As we get healthier, we can do more. I mean, we can do more than we ever could have done before.

Yeah, yeah, we for sure have a like really good grasp on nutritional things and eating, eating correctly. And yeah, those are all parts of it. Um, I think our, our big why for wanting to do the podcast is And I just start by explaining our story in a nutshell. I got bit when I was 18 here in New Mexico. I was camping during spring break and I had the big typical bullseye rash. I had it for at least 2 months and nobody knew what it was. I was told it was an infected spider bite and then, you know, ultimately spent the next 16, 17 years going downhill. And things like pregnancies and car accidents really escalated and I couldn't recover from them. But the illness and the fatigue and the pain always had an identity as far as like, oh, it's just I can't cope with being pregnant. Oh, I just don't do well after an accident. Like there was always some logical reason why I was struggling. And I would have quarters, like a good month here or there, but then more and more bad months. And then really what ended up happening, and this was so astounding to us, I remember hitting the 7-year mark where I had been in extreme constant pain and dealt with extreme fatigue for a full 7 years. I just remember, like, as those years ticked by, just us looking at each other and being like, oh my gosh, it's been a year. Holy geez, it's been 2 years. Are you freaking kidding me? It's been 3 years. Like, what is going on? And so, You know, I like to describe Lyme disease as really, if you picture a near-death experience, you know, there's books and songs and stories written about people who go through near-death experiences and how it changes them and how they have, you know, just a more focused, maybe more focused or more loving, they reprioritize things.

But a new lease on life.

Yeah, it is. But with Lyme, that near-death experience that you are experiencing is spanning a decade or two decades. And the psychological implications of that stuff, like all the, the emotions that go with death or loss, the grief, the anxiety, the transitions, the confusion, you know, all those aspects, you're wrestling with those for years even though you don't know what you're dealing with, right?

And, and it's important to realize too is that those are hard to deal with for healthy people, right? Add the Lyme ingredient of— a lot of times they end up— Lyme, and you experience this with brain damage, uh, you know, uh, neurological damage, it clouded your thinking. So a lot of people have experienced brain fog, which is basically a neurological damage. Add that ingredient to the whole thing. How in the world are you supposed to deal with that? How are you supposed to? And unfortunately, it's a leading cause of death, is suicide within Lyme patients.

Yeah, and it— you see it on the pages of the support groups that are on Facebook and different stuff. People are just living, they are just suffering, and it's going on for so long. And so, yeah, you You know, all these concepts and all these ideas, when you, even if you're into the self-help and personal growth realm of podcasts and, well, Napoleon Hill, who wrote Think and Grow Rich, which is one of the best or one of the most recognized success books.

Yeah, self-help, is one of the first self-help books.

Yeah, on how to succeed, you know, he talks about how just the fear, the basic fears that people live with that really pull them down, the fear of poverty, the fear of death, the fear of old age. And all— so just with the fears that a normal healthy person lives with, you have to learn as a person to conquer those things. Well, for those of us who are living with these chronic illnesses, those— and he's talking, Napoleon Hill, when he's talking about how destructive those thoughts are, he's talking about theoretical, right? Like, a lot of people are scared of dying just because they don't—

the fear of death.

Yeah, the fear of death. Yeah. So except for those of us who are living with it, it's not theoretical. It's evident. It's placing— it's like death or decay or chaos is wrapping itself around every aspect of your life. And so not only are you dealing with actual fears versus theoretical, also are very limited in what, what you can do about it.

Yeah, it It's so incomprehensible the amount of— it's so complicated, it's so massive of an issue when you add that Lyme ingredient. It's hard for normal people, normal healthy people, add the Lyme ingredient, it's so incomprehensible.

I mean, it's unfathomable and we keep coming back to that.

Yeah, and I think that's part of the reason, which we'll talk about a little bit more, is a lot of times those around you, and I can testify personally that I did this. I missed how bad it was for you because I think part of the reason is it's not like I was ignoring you. It's just incomprehensible, that amount of—

ugh.

Yeah.

It is—

I don't have the word for it, but it is so hard to understand that.

Yeah, and it puts strain because I remember for years just going downhill and then I had to be going to bed or sitting up earlier and earlier and, or sitting in bed earlier and earlier. I knew that when I was asking you to put the kids in bed for the 400th time in a row, it really was because no matter how sick he was, I knew I was always sicker. And it didn't, even if he was having a down day, I couldn't compensate for that in any way. And so, you know, part of our why is just in talking through some of those social-emotional issues, some of the psychological issues of dealing with near-death experiences that span decades, and really having it change the trajectory of your life. So I remember years and years into my disease, when it still did not have a name and I couldn't figure out what was wrong. Um, I remember realizing like my body was so weak at that point that the only thing that I could control any longer were my thoughts. I couldn't carry up a load of laundry, I could not move dishes, I could not brush out someone's hair. I just— all I could—

even that was hard because with the brain fog. Oh yeah, I mean, you're never complicating it. I mean Even that was hurting. Even your, you know, but go ahead, I'm sorry. Which you're just superwoman, so I had to say that.

I, and I heard, and there's a quote that goes along with that. It says, "The only person who determines your thoughts is you, and it's always a choice." And I felt that even though my everything else was out of my reach, I was really in charge of my thoughts. And so, you know, I tried to be proactive and learn as much as I could and listen to audiobooks and, you know, all that stuff. But really through that process, and as I've been in recovery mode and talking to other families who are in the same position, really we feel like we've just come up with this fight, heal, live concept that we want to bring into the podcast.

Right.

And that's how we're going to structure each and every one of these. And hopefully what will happen is that really, as we tackle different concepts of chronic illness or different tools for your tool belt, really just creating that put more pieces of your puzzle together, because everybody is going to be different.

Yeah.

But you also have to come to this point where Okay, you are isolated, you don't have maybe the resources that you would like to have or that you once had, but yet you still have to choose every day. And I still do it even though I'm not in pain. I still have to choose to fight, choose to heal, and choose to live by not letting my circumstances overwhelm me. And I do okay some days and I do better. It's an ebb and flow. And so that's just really our heart is to bring materials, bring concepts that we can piece together and just kind of make more sense of all of this. So I wanna explain with our podcast, we are gonna monetize, I wanna share our mission.

Right.

Yeah, and then I'm gonna tell you why we're gonna monetize it. Our mission for LymeVoice is to serve the afflicted, the weary and weak. And I'll repeat that: our mission is to serve the afflicted, the weary, and the weak. And I love it. I am so thrilled with it. Yeah, we have been wrestling with it for months and months, and I've just been wrestling with it and wanting— how do you encompass like all the loss, all the grief, all the, all the things that you've learned into a sentence? And really, that's our heart, is to serve people. And so even as as we start to expand, even supplements and stuff. To me, I wanted to create a company where, okay, we all have to spend money on what we need to survive, but let's have it go to a, to a cause or to a person who needs it. And so we are gonna monetize our episodes, we, um, right, and we're gonna screen people. We really will only bring products up that we think are beneficial, and not every product is gonna be be helpful for everyone. You've got to really take control of where you're at with your health and then just start thinking, almost thinking bigger or formulating plans to help you succeed. And so really our goal is to kind of help you guys. It's called LymeVoice, but really our goal is to help you find your voice within your community, within your network, within your circumstances. Because some people have help and others don't, right? And a big part of, of the struggle of even recruiting help and needing so much help to manage a household, or it is that people don't understand, right, the, the dynamics of the oppression that you're living with, or the—

yeah, yeah, the pain, the, the, the struggle of Lyme isolates you just It literally puts you in a different world than the rest of your friends, and it's so easy to get isolated because of that.

But yeah, absolutely. And one of the things that we've talked about, as you know, we've pushed very hard to get this up on air. It has taken a phenomenal amount of effort and strength and resources, and there's been times where I'm like, Why are we doing this right now? Like, uh, this is just complicating. But it's not, because even if— so I have Lyme, and my son Nathan has tested positive at this point. I had 3 pregnancies. We haven't tested the other kids, but he's symptomatic. And, um, even if our needs were met entirely, we would still be doing this because there's so many people out there who need information, they need education, they need specific knowledge, not general knowledge. They need specific knowledge about the disease, even so that they can advocate for themselves and figure out the treatment plan that is going to work for them. And that's a hard— that's a heavy load to carry because I felt that way for a long time. Yeah, like I was piecing together my treatment. And, and so it is, it's just—

that's a hard concept. That's something we had to learn the hard way, is that Our medical system right now is basically set up to help your symptoms, but they don't really do a good job of curing the cause. And especially in Lyme, they don't even know what the cause is most of the time. And it's very— it is because of circumstances, it's a very complex issue.

Yeah. Really, our target audience, we're gearing the podcast towards an audience who really was in the position that I was in several years ago, maybe like 2011, 2012. It had been a lot of years. I was used to just pushing through the pain and fatigue to get stuff done. But if I like sat with my feet up or rested here and there, I could kind of make it. But then, you know, I really, really started having more and more herxing Um, yeah, you took a quick turn downhill.

Yeah, it really started escalating to scary.

Yeah. And so, yeah, that's part of the education process is if you are living or really not living, if your life is being greatly affected by your health, yeah, you've got to start thinking outside the box. You've got to start tackling it from several angles and not really for your long-term health. Yeah, you can't just be taking 10 or 11 medications for a symptom.

Yeah, and if we can get— and, and that's our target audience, we really want to get to the, the ones before you get to that escalation where things turn downhill. In fact, we have some good friends of ours who we've been watching for a few years. They started showing symptoms, we started talking about it Important part is we caught it before a steep down, downhill dive, right? So, you know, even now, like, I think we just barely caught it in time, and she's starting to show symptoms even at an accelerated, accelerated rate.

Yeah.

Point is, if we can, if we can help you guys and stem the tide just enough, we can eliminate you guys having to go down the same path we did. That's our heart. That's our goal. If we can you know, put a, put a guardrail there. Hey, don't take this path.

Don't wait. Yeah, don't wait forever.

Yeah, um, that's, that's the real meat of it. And I think we're so excited to bring that to people because we— I mean, it's— it literally could save lives, families, and marriages. And if we can have— be any part of that, awesome. Yeah, excited. That— yeah, that's amazing.

Absolutely. I mean, it makes it makes when people get either tested earlier than they would have, it just makes it seem like worthwhile, like the suffering was worthwhile. And a lot of families, my friend who just found out she was diagnosed with it and has started treatment, she said, you know, I feel like I've been smelling smoke for a lot of years.

Wow.

And I was looking from room to room and I knew the house was burning down around me, but like I couldn't figure out where the fire was at. And for people especially like who have young kids and have families, that paints a great picture.

That's awesome. Yeah.

Yeah. I mean, that is— I, you know, something is wrong, but yeah, but you don't know what. And so, so with our format, in hoping that we'll just bring pieces of everyone's puzzles a little bit closer together, um, we feel like the fight portion of our podcast is just going to be about things that you ought to know. For instance, watching Under Our Skin, the movie, that was hugely beneficial for me. And I believe that that movie, it has saved a lot of lives because—

yeah, we've drawn inspiration from that movie too in our story because, um, that their story was so important to us and it's helped us so much that in our stories, one of the first podcasts we recorded was our story because we hope that our story is relatable to other people. And even in every podcast, right, that we do, we want to have the Fight, Heal, Live story because we want to hear those stories from people that are dealing with it on a personal level because it identifies. And not every symptom is exactly for every person, but the power of hearing it firsthand is— and the audio, I mean, you can, you know, words are 90% emotion. So if we can communicate that emotion through the mic, awesome.

Yeah, yeah, yeah, it's, it's a huge resource. Um, and but even some other just logistical things, like the restrictions on doctors vary from state to state. This is something that you ought to be aware of because it will affect the treatment that you have access to. Now, there are Lyme literate doctors in a lot of states, or people that claim to be Lyme literate. But like, for instance, in Arizona and Nevada, they have more— they're allowed to do more treatments, right, than a doctor, a Lyme literate doctor in New York. And so if you are only seeing a doctor in New York, you are going— he or she or you guys are going to be bound by this restrictions that exist within that state, right? And so will that vary the treatment you can have? Absolutely.

Yeah.

But, but you have to kind of wrestle through the system to kind of realize some of this stuff. And since there's not one specific treatment plan that's approved and working for people, obviously if you catch it sooner the better.

But yeah, for the chronic— for the chronic Lyme people, there's so many Because it attacks your weakest areas of your life, yeah, I mean of your body, of your health, um, you have to treat the, the damage along with the healing. As you're eradicating the spirochetes, you also have to treat the damage. So brain damage, or some people have issues with the gallbladder, neurological, yeah, yeah, I mean the list goes on. So those treatment protocols all vary, and that's why it's so important to be with a Lyme literate doctor that can understand and can take a top from head to toe approach because you have to treat your whole body and that makes it extremely complicated. And because we are a symptom, uh, we're treating the symptoms, treating symptoms. Our medical community, community is not prepared for Lyme as a whole. There is a few out there, but as a whole they are not. They're being overrun by Lyme. And so that's why we feel again that our message is so important, because until the doctors come up with a better solution, we have to be our own advocates and we have to join our voices together to learn from each other, because, you know, we're on the forefront. This disease, often we've referred to it as similar to AIDS. Just the way that—

Like back in the '80s when AIDS was— when they didn't know how to treat AIDS, there wasn't a symptom. Yeah.

The struggles of it. Yeah, the struggles of how— of getting treatment are similar to the AIDS story, but—

Yeah, and I'm excited to see what is going to evolve over the next 5 to 10 years because I think, you know, it can only get better. But there's a lot of people suffering in the meantime who can't wait. They need immediate help. Yeah, and so that brings us to our heal portion, where we're just gonna talk about different aspects of healing and some stuff that I wish I had been told sooner that do help in healing, like just getting your pain levels down, going to a pain clinic, asking your primary doctor for a pain clinic.

You didn't even know a pain clinic exists. And neither did I, right? Yeah, it was an important, important, important step. I mean, that was huge when you can function.

Yeah, yeah, somewhat. It helps at least temporarily. Yeah. Um, another thing is supplements, like understanding that all supplements are not made equally, right?

And I didn't know that.

Yeah, I, I did because I grew up in a chiropractic household And so I knew, but even as doctors are prescribing different things, like, you just have to be aware of what you're taking and what other possibilities out there exist. And, you know, it could be as simple as maybe in hearing this podcast, you decide like, hey, okay, I'm kind of going down this road, or I'm already at this, and just taking the time and giving— validating even what's going on in your head or your body and saying, You know what? There's a lot going on here that is getting missed or that's not getting addressed. And how do we make good choices when it feels like lose-lose or—

Right. And another horrible part of Lyme is often it is misdiagnosed as it's all in the patient's head.

Yeah.

So for the person who is being told this, which you were told this many, many times, That it's all in your head. And for the person who's being told this to have the courage to say, "No, it's not in my head. This is really happening. I really feel sick." That was really hard for you to do. And if we can, through the heal part and through the discussion part, if we're able to empower you to say, "No, this is not okay. There's something severely wrong here." We wanna address the healthy people in their lives as well. We wanna be able to communicate. I think we're gonna have interviews with healthy relatives of ours who saw hindsight's 20/20. We can maybe hopefully isolate and realize some of those places that we missed or we got mixed up in.

Yeah, and just even the impact on kids. Like if you're listening to this because you have a kid, I would not have any clue what my son Nate was talking about. Right. I mean, the other day he went and rode his bike and then we were shooting hoops and he says, "Mom, I'm really tired. I already rode my bike today and so my arms just aren't feeling good." And I said, "Well, what does it feel like?" He said, "Feels like I have no control over my arms." And this is a 10-year-old athletic, super high-functioning, And yet we just see it, you know, wiping him out. It started with headaches and now we're seeing different stuff. But I wouldn't have understood as a mom the depth of what he's explaining if I hadn't myself lived through all those years of the utter fatigue, the hurting, the where it just feels like the life is getting sucked out of you after you move or stand up or do simple tasks.

Yeah, so that is what the spider kid is doing, is attacking every part of you, trying, feeding off of you, draining your energy. I mean, it is— oh yeah, it is, it is. I mean, it's an accurate description.

Yeah. Um, another aspect of healing is just that the memory issues that most people have, the inability to articulate, um One of the things that I started to do, but I have a better solution for you guys, I just made a spreadsheet and I started asking every doctor I went to, what do you think this is? Can you help me? Is there a specialist you can refer me to? What medicine changes need to be made? Like I had a list every single time, 'cause I couldn't function and I didn't wanna waste one single appointment. Like if my pushing got us closer to it, even a little bit, it was worth it. And my pain doctor, I remember him being like, how many questions do you have for me? Like, where's your list?

Yeah.

Because I'm like, yeah, I've got you for 15 minutes. Go.

Yeah, you have to be proactive. Yeah. And that's one of the things we want to encourage you, our audience, to do is to be proactive. Ask those hard questions. Doctors are going to get bugged with you. They're going to give you attitude. But to have the courage and say, no, that's not good enough. I'm not leaving here until you give me the answer. I mean, that takes—

Or point me in the right direction. I'd started saying that years earlier. You know, for us, I kept thinking, oh, when I recover from this pregnancy, I'll be fine. When I recover from this car accident. But trauma is such a huge trigger for almost every person. Almost every single person who has Lyme for more than, you know, for more than a couple of years and is dealing with that stuff has to start realizing that really they're the only ones looking out for their health, and that's a sobering reality. But one of the suggestions, even in Heal, even in, in regards to healing, is using Evernote. Evernote is just like a Word document that can sync between your computer, and you can get an app on your phone, and you can keep track of in Evernote And because there's an audio feature on there where you can just press a button and talk into it and just put a title on there so that when you get home that day, if you want to run it by your spouse or your parent or someone, like, yeah, hey, I can't make all these decisions on my own, especially when I'm struggling just to function. Um, continuing on with healing, I think if I could rewind and tell myself something back years ago would be just to be open to alternative treatments. And that is especially true within the Lyme world. I mean, most people— I don't see people getting better just based on antibiotics or just based off of one thing. They usually have to tackle it from a lot of angles.

Yeah, and no magic one fix, one pill fix for this one.

Yeah, but to not get lost in the sight of like pain and lack of sleep are such huge, huge issues for people. I mean, I went for years, years and years without sleeping more than a few nights a year, and it was horrendous. And yet I didn't know enough or didn't, I didn't know enough to say, no, this is not acceptable. Like I won't continue living without sleep. I just kind of felt like, Oh, I tried a sleep medicine and I still take sleep medicine. It didn't really work. But I— and, you know, people say, oh, well, don't eat sugar. And, you know, that might work for a healthy person, but like, if you're not sleeping and you are in excruciating pain, those have to be things that get under control to even enable you to heal. And, you know, things that I thought I would never do, even like getting a medical cannabis card. Like, I had no experience with medical or any marijuana, and so it wasn't even on our radar as far as a way to help reduce the pain. Because my pain was so intense, I was on all these pain medications, they really were not helping, and I was scared that I was gonna like kill my liver in the process.

Yeah, and they were testing you monthly for that because you were on so many drugs that they were very concerned about your liver. It was being damaged.

Yeah, and really I felt like in that there was a lot of unnecessary suffering. And I wish somebody had talked to me even about medical marijuana and how helpful it can be. And even without wanting, even if you don't want a full, all the THC, you can buy CBD oil. But just to be aware of your options.

Yeah, there's options, yeah, exactly.

'Cause a doctor never sits with you and says, well, let's see, You've been in chronic pain now for 3 years.

Let's— not usually.

Not usually. Yeah.

And so none of the ones we ever saw.

Yeah. And so even just finding a doctor that can, you know, even treat your whole self, like, tackles things from multiple angles, is just really, really helpful.

Um, yeah, yeah.

So that, that brings us to the live portion.

Yeah, how do you live with this new Lyme ingredient?

Yeah.

I mean, it's complicated. It changes— I mean, nobody wants to be defined as this sickness. I am not a Lyme person, you know, I mean, that's not— but the new Lyme ingredient, it does change the way you have to approach things. We had to learn at a very, you know, at a high cost that there was points where you could only do one thing a day. And, you know, like one thing being either you get ready and put your makeup on or you go to the event with no makeup on.

Right.

I mean, that's how simplistic it had to get. We had to learn that a little bit with you and say, hey, you know, this is what we learned. When you're going through treatment, when you're at your heights, when you're having a bad day, you have to know you can only do one thing. And to to empower you and give you the permission is what we were after. We needed permission to do this, right?

Oh yeah. And you just feel so guilty as like the years are passing and you're watching your house just fall apart, and you know, you, you were slipping away, really. And I think that's what people need to understand is the severity of the disease. This is not something that just simply goes away. Like some it, it is complex. And so even, even the issue of like cannabis, for me, one of the social-emotional things was I didn't want to lose my personality, right? And I remember thinking like, oh, I'm already taking pain medicine, and so I don't want to add in cannabis because I don't want to lose what's left of my personality because pain has taken so much. But until you said you're like, you cry all the time And I was at that point when I was at— I just, I mean, the last 6 months before I went to treatment, I just could not stop crying. It was just oozing out of me. I could not contain it. And, and yet—

well, and it's funny too because you were taking Ambien at the time, and the Ambien is powerful stuff. You would come down because you'd always go to bed before I did, but you would come down the stairs and I'd be like, what are you doing? Because you were headed for the fridge totally Right. I mean, that stuff is very powerful. You don't— you— and you would not remember the whole entire conversations. You would sit down and watch a 30-minute sitcom. Anyway, point is, you would just— like, that is so much more powerful than even any of the effects that I've seen you with medical marijuana. I mean, like, it was funny that we were so concerned about you losing yourself, but the drugs you're currently on are way— for, in your experience, were way more powerful than any of the medical marijuana that we've been using.

So another thing that I want to add in is just in the live portion, in what we've defined as fight, heal, and live, you are gonna cycle through those things. It's not like you fight for 6 months and then you're healing. For some people, they get to do that in a short term like that, but you really, you do fight, fight, heal, and live. And in some days you're doing all three of them, and then some periods the only thing you're doing is fighting, or for a few months you're just healing. So to bring a consciousness to the illness that like it's not all in your head, it's not all chaos, there, there can be some things that just as you begin to understand the specifics of the disease and, and some of those social-emotional things to just give yourself grace even in being like, okay, here.

Yeah.

Here's where we're at right now. And so I think for each person, wherever you're at in whether you're fighting, whether you're healing, whether you're focusing on living, it's— I want to encourage you to really figure out how you define success in each of those cycles. Because it, as a Type A personality who likes to go fast and get things done, it was torturous to just be watching all these things fall apart, goals that we had for ourselves and as a family. And you're watching your lives, you're really watching your life slowly slip away. So just deciding like, okay, this is success for me if I can do this one thing. Today, maybe I do juicing, maybe I call another specialist, maybe I contact a friend who's had similar stuff, maybe I order an audiobook. That's success. And you, only you, can define success. And so you have to take what your physicians are saying and then even what your gut is saying. I've talked to so many patients who their doctors have said after 5, 6, 12 years of treatment, look, there's nothing left I can do for you. And so when you're— which I was at that point. Yeah.

And we have to go back to what we had said earlier, is Lyme is so complex and it's so overwhelming that what we— I used to have to tell you all that, all that, and to this day I still tell you, babe, look at what you're up against. And look, okay, yeah, you only got done what a healthy person gets done in an hour, it took you all day. But they didn't have the cards stacked against you like you do. And so every step— and we want to encourage you out there that if you're dealing with this kind of symptoms that are just overwhelming your life, the smallest step, like swallowing one pill, is huge. You have so much stacked against you, and you can't— and I— and just like I have to encourage you personally Yeah, all the time. We, we want to encourage our audience, you did one step. Look what you had stacked against you. That is incredible. Keep it up. Don't lose— don't— I mean, if you think of it as a loss, it is, but if you think of it as a win, it's encouraging to do it again, right? Up tomorrow, and tomorrow maybe you take two pills, right?

Yeah. And it is— there's this mix of desperation And also discipline, because I don't see people getting better who are not disciplined and who are not making those hard choices and changing their habits, changing their food patterns. Like, it's, it's not the type of disease that leaves you unaffected. It, it does. It wraps itself around so many aspects, especially the chronic illness.

I mean, if, if a lot of people have the 30-day antibiotics, but, um, it, you know, especially the chronic people, um, and that's not even always the case. A lot of people do the 30-day and still it still doesn't, uh, cure them of it and they end up developing into a chronic illness.

Yeah, and so for all of you guys who are sitting there trying to make those decisions and figure it out, hopefully we can come alongside you and bring, bring some things to light that could be helpful. But really, I just want to encourage you to not get stopped and just to keep going. And really specifically, I really want to encourage you listeners out there just to not get stopped in your pursuit of your health, not to stop in pursuit of a doctor that you think will tackle an angle that's getting missed, and just to keep pushing. And I feel like the— we languished for several years in this like realm of indecision, doubt, and fear, right?

We totally did.

We did not know what was wrong. We obviously were— we were running out of money after a few years, and all that stuff affects what plans are accessible to you, what type of healing is accessible to you, right? And so, but you've got to be at the place where even you give yourself permission to say no, like, this is not acceptable, right? I need to sleep. I need to lower my pain levels. And if you can't help me, point me to someone who can. Yeah, yeah, yeah.

I think that's one of the reasons that we were fortunate to make it through, is that you always have had that attitude way more than I do, um, where you're always— you don't take no for an answer. You're the persistent asking questions constantly, which is really the best way to get through this is to be that proactive. You have to be very, very persistent. And it's the ones that can do that are the ones that are experiencing progress. The ones that don't take no for an answer. Even, I mean, and we do know how hard it is.

Oh yeah, yeah. And we do, the healthy people listening to this podcast, hopefully you're listening on behalf of a friend or family member who you can then say, all right, how do we create a support network for you? How do we make sure that you don't disappear from our lives? And because you do, you become irrelevant, and it's, it's just the pace of life and you can't keep up.

But yeah, it's, it's such a different animal than anyone. Like we said earlier, it's incomprehensible.

Yeah, yeah, it's just, it's an atrocious disease, and it leaves lingering effects. Yeah, yeah, yeah. So that is really like what we're hoping to bring to these podcasts. We're super, super excited. You're gonna notice that my energy levels change from episode to episode, and that's just still part of my recovery.

Yeah, we're still very much in the fight.

Oh yeah, some days I have great days and I am like, hey, I did 20 things, and you know, but then there's days that I have to just sit in bed and be still, and that's what my body needs.

Let's tell them where you're at. Um, you are— you went to treatment 2 years ago, uh, 18 months ago.

18 months ago, yeah, summer of 2013. I finally got a diagnosis and was so far gone that we ended up finding— it was called Shea at the time, it's now called Invita Medical Center in Scottsdale. And I left, I went there for 2 months, and it was crazy. We had to move out of our house, it was a 2-story house, and rent a single story. And I left, and Aaron was here with 5, 5 young kids and my mom, and they held down the fort. But then really every day since I've been home, I I mean, I have a very intense protocol that takes about 3 hours including exercise, some nutritional stuff. I do coffee enemas, juicing.

It's more than 3 hours, babe.

Yeah, I mean, yeah, and taking all my supplements and stuff. Yeah, you're right. It's probably about 4 hours depending on what supplies you have and if you feel good. If I don't feel good, it takes me till 4 o'clock, but when I feel good—

I'd say it probably averages out to about 6 hours. A day since you've been home. It's been—

and that includes like rest and needing to rest.

Yeah, extra rest.

Yeah, yeah. So that's massive.

It's still—

it's massive.

Yeah, it's not easy.

Yeah, some days when I'm like, I just take care of myself and it's 4 o'clock and my kids are coming home. And so even the fact—

those are the days that I congratulate you on staying alive.

Yes. You have to have this flexible view of success.

It's an effort. I see it. You put a lot of effort into staying alive.

Yes. And there is an author who, I forget his name, but he wrote a book called Suffered Long Enough, and he's a physician, and he describes it as climbing up a well. Like when you're living with Lyme, you're climbing up the side of a well that you fell into, and you have to climb up to get out and function on the same level everyone else is at, except you will spend years climbing out, or sometimes you climb out and fall back in. And so it's really this long-term approach to treatments, to holistic treatments, to integrative medicine, and understanding what those terms mean, and giving yourself permission to just demand more. And I don't mean that in a mean way towards our medical system, but do not— if you're hitting that 4-year mark, 5-year mark, 6-year mark, form a support group, get a mastermind group of the people you trust and say, look, I'm just going downhill, how can we stop this? And hopefully we'll have some ideas to share with you guys. And really, we just want to inspire people to action, to advocate for themselves. Uh, in conclusion, I want to leave you guys with a quote, um, that I got from a book called Soul Healing, Dr. Tammy Smith. Has a great quote in there, and she says, "Your behavior is your final word on what you really believe. No matter how deeply held you think your faith is, if it doesn't result in action, it is an illusion." And that quote was something that I really held on to because I really did want to get better. So I wanted to take those steps so that even the people around me would see, like, Okay, I'm doing the best that I can, and yet I'm still in this situation. So if you guys are in those moments of suffering or moments of just feeling like life is crushing you, just hopefully be moved to action, to act, because you're worth it and your family needs you and You are probably going to have to get to that point where you own, you own your health and you gotta tackle it with whatever resources you have.

Yeah.

So thank you guys so much for joining us. Thank you for listening to our vision and our mission for these podcasts. And at lionvoice.com, you can reach, um, so whatever your motive communication is email, Facebook, Twitter.

We're also going to have products on there that we, we endorse and use, books that we've read that have really been instrumental, some of the ones we've talked about today. Please subscribe. Tell— go to iTunes or Stitcher and subscribe to our podcast. If you feel led, rate us. We'd greatly appreciate it. Every rating helps promote us, and we want this to get out. We need you guys to come alongside us and Talk about it, share us with your friends and family, and help get the word out because the more that we have in our community, the more gathering of Lyme patients, the more resources we can gather from, the more healing we can do. The bigger our voice is, the better we can do. So we're excited. Be part of— read our blogs, share your information. We want to hear from you guys as well on Twitter and Facebook. Thanks again for listening. We hope to be able to work together with you guys to do amazing things, and I think together we're going to fight, we're going to heal, and we're going to live.

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 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, 'kay? 'Kay. 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.

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