060 Healing from Lyme Disease begins in your mind

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

Welcome to Lyme Voice, where fighting is a mindset, healing consists of choices, and living is the outcome. On today's episode, we're going to talk about two things. We're going to talk about how important it is to attend some of the Lyme conferences that are happening around the country right now, even if you can't come out to the one here in Colorado, which was excellent, and we're going to talk more about that. The main thing we want you guys to understand in all this is how important and how beneficial it is to attend some of these. I know how hard it is to get there, but if you can, it'll be worth it. Now, secondly, if you don't want to hear us talk about that, you can skip all the way forward for about 20 minutes and then you'll find Sarah's speech from the conference. And what's cool about this speech is it's actually a very good snapshot a good snapshot of what we're about, what we're doing. After 3 years of doing Lion Voice and 60 episodes, it was really helpful for us to just put— to— for Sarah to kind of write it out and to talk about it. And I hope you guys enjoy it and are encouraged by it.

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.

Lyme Voice thanks Invita Medical for the continued support. Please reach them at 1-866-830-4576. It is currently June 3rd, but we are recording in regards to Lyme Disease Awareness Month. Which was last month. We didn't do a whole lot of publishing, we didn't do a whole lot of social media because we were actually attending the 3rd Annual Rocky Mountain Forum: Lyme and Other Tick-Borne Diseases, brought to you—

wait, there's more—

by Colorado Tick-Borne Disease Awareness Association, the TBDAA.

Such a crazy long name.

Okay, Lyme pieces. Let's remember that Lyme patients are— have good intentions. Their names can be a little bit crazy, especially in this case, but it's still—

well, we met at the conference, we met so many people, so beautiful people.

Yeah, it was incredible.

But like, there's people and then they have their organizations or their projects, right? Like, we have a Lyme voice, and then they have books that they've authored, and then different— or most people have founded more than one organization. So there's these like long lists of who people are and what their names are.

Yeah. So for if you're struggling with brain fog— oh yeah, I know, you're like, I went to a conference and they talked about Lyme disease. What was the name of it? Lyme Disease Association Tick-borne.

Yes. So a ton of our time and energy in May went into preparing for the conference, which was on May 19th. And Monica White is one of the founders, coordinated it. This is the third year and it was such a great event. Like shout out to Monica. She is incredible. It was so fun to meet her in person. We've been talking via email for almost a year now, but it was really fun to meet her and her family. Yeah, and it, it was such a great environment to be in. And we felt this when we went back in 2014, I think it was, or '15, we went out to the Living Well with Lyme Disease conference out at the Omega Institute. There's several hundred people, and I remember just, it was so healing to be around people who you almost didn't have to say anything to each other.

You're just like It takes one to know one, and we can tell when someone's suffering now.

Yeah.

And like many of you can. So just being around people, then you could— it— what they didn't even have to say anything. A simple look to each other in acknowledgment was so healing. And so it was huge. Yeah, it was really huge.

Yeah, it was really neat. It was really neat to be a part of. And our kids went.

And, um, yeah, this year at— in Colorado It was, it was really cool to be a part of it.

Yeah. What? Oh yeah, a shout out to Monica.

Yes.

She— boy, I'm sure her picture on Facebook or Instagram, I can't remember, the other day was her with her IV port hanging in the car while she's driving back and forth from all of life. And she put so much work into this conference and the number of emails and coordinating and Yeah, they did such a beautiful job, and I just think it was such a unique environment. It was so healing to be a part of.

It was impressive to me that, you know, even Monica and her husband, they're no different than anyone. They just chose to participate in this thing, and she didn't just choose to participate, she rocked it.

Yeah, yeah, it was great.

But she's just a normal person who went to insane amounts to make this thing come come to fruition. It, it, an extreme amounts of energy and time and self-giving and self-sacrifice. I mean, she sacrificed not only her time but her time with her family. And, you know, it was, is really amazing to watch that. And here's the thing, it's not just her. There's hundreds of people throughout the United States and throughout the world, if not thousands of you, that are continuing to fight And to me, that just gave me such validation, you know, to be around other people who are, regardless of their circumstances, regardless of if they have to hang a port as they go do their errands to do Lyme awareness, that's, that's huge.

Yeah, I mean, all the volunteers lived with extreme issues, and, um, some of them had severe pain, and, and yet they were there all day. It was just really neat to get to meet all these people who are just fighting the same fight, right?

And now I wouldn't suggest doing that. Like, it's probably not the best idea to go running around town hanging a port. Like, maybe you should slow down a little bit, right?

Boundaries are important.

Don't feel bad if you're not doing that kind of thing. It was just because you need to take care of yourself first. But, um, you know, it was just such an inspiration to see the amazing things that she was able to do. She kept going. You know, really, a lot of the speakers were the same way. A lot of the speakers who were, who were not physically sick were still having to overcome the same boundaries, the same obstacles as all of us do every day. They're just doing it in a way that, you know, that's in their field. And it was such an inspiration to see how dedicated each, each and every one, not only the speakers but even the people that were in the audience.

Oh yeah, well, and we met so many physicians who came just to be a part of the conference and be aware. And like, there's just this hunger for information, and it's not just—

the physicians was really encouraging that there's at least people trying to understand and fight against this disease in Colorado.

Yeah, yeah, for sure. Yeah, Dr. Sean Naylor was one of the speakers, and as far as I can tell, being here in Colorado, he's probably the one treating most of the neurological patients here in Colorado. Yeah, yeah, we had interviewed him about 3 years ago. You know, it was interesting because the different physicians spoke and they talked about different aspects of testing. Igenex was there. They talked about testing and some good, really good stuff that's happening with testing, but everyone just had a little bit of a different take on it. And you do— you, you walked away with this understanding that like people are fighting on so many different levels to try to bring help and healing to the people they know are suffering.

Yeah, it was really encouraging to see people that were—

that in real life, in real, real people.

Yeah, well, we all get isolated. This, this disease will isolate you, and it is encouraging to be around real people. But not just real people, real people that are fighting. I mean, just to be attending that conference, they had to fight to be there. I mean, I think of the, the mom with her kid, with, with her daughter in a wheelchair That was not an easy task for them to come over, find a hotel room, etc., to be there for, you know, this one day. You know how physically exhausting it is just to go to the grocery store. So they— I mean, they were— it's an interesting dynamic of people that are desperate and determined. You can't just be one or the other. It's, it's a special blend of both. I think, you know, if you break down even the fighting mindset a little bit.

Yeah.

Desperation is not a good way to act, but sometimes it can move you in ways to do extraordinary things, you know. And I think that's what this mom was doing by taking her daughter there, is she was, she was not only desperate, but she was determined. And we know that those are key attributes into the whole fight, heal, live attitude. You have to be determined. And unfortunately, we all get to the desperation place. Where we just have to move forward. And so I think being around people like that, where you could take one look at them and understand the, the determination it took to be there—

yeah, totally.

Really encouraging.

Yeah, yeah, it was. It was really neat to meet people that we've admired from afar. Um, we got to meet Dorothy Capuccia Leland, who wrote When Your Child Has Lyme Disease: A Parent's Survival Guide. And I'd actually never read this book, and partway through it, and it's just fantastic.

I'm like, oh man, what's the name of it again?

It's When Your Child Has Lyme Disease: A Parent's Survival Guide. It's been out for years, and her daughter, I believe, got sick.

A must-read then.

Oh yeah, for sure. It's definitely— I've recommended it to other people, but, you know, since my own battle was at the beginning, I hadn't necessarily picked up a book specific to children, but we're definitely dealing with that stuff currently. So, and it's just, it's same thing. She talks about the social and emotional side of things, the isolation of boundaries, of having to help your kids create boundaries. Anyways, I have admired her work for a long time. It was really fun to get to meet her. Um, I think one of the things that we both walked away with is just how, um, like hungry people are for answers. Yeah. And it was interesting because right after this, I got to talk with Greg Kirk. Right after the conference, about a week later, I got to talk with Greg Kirk, and he is with the Ticked Off Foundation. He's one of the founders, and he coordinates the Ticked Off Music Fest, which many people are familiar with. And, um, something that was so fascinating that he said that I would never have believed, but we've seen it, is he said when he started the Ticked Off Music Fest, he thought it was going to be like people just coming together for a concert, doing a fundraiser, and that was kind of the extent of it. He said around 70% of every concert they've held, 70% of the people there are Lyme patients. Wow. In their wheelchairs with their IV poles. And he was telling me a story that, um, you know, at big events they have wranglers who go around and wrangle up the speakers or the performers to keep everyone on track, right? Keep everything going. And he was already up on stage with the wrangler going up on stage because he was the speaker to do the opening of the one of the concerts. And he said this guy and his wife in a wheelchair is hollering out at him like, hey, wait, stop, hold on, I need your help. And he's like, oh, okay, comes down and he goes, what can I do for you? He goes, no, we need help, my wife has Lyme. Like literally looking for medical help, information, anything at the events.

Wow.

And that, I mean, that's exactly what we've seen at the conferences. So that really surprised me that that was the audience they're growing. But that just goes to show— him and I were both saying— goes to show you, like, people are so hungry. Yeah, for answers. Yeah, on, on so many levels.

Yeah, and there's so many levels of questions that need to be answered. You know, I'm not going to tell you you come to one of these events and you'll have it all figured out. 'cause you probably won't. But there is a lot of value, a lot of value, a lot of information. I mean, some of the— because it is a smaller venue, a lot of these physicians and speakers were available after and during the conference. So I know you had several good conversations with people who had some pretty significant questions and you were able to encourage them and help them. And then I saw the same thing happening with speakers. To be able to walk up to the physician and say, hey, you know, some of these questions that I see on Facebook and, you know, in the groups and even that are presented to us, you know, those are hard questions that you need time. And some people are getting some of those answers there. And even to maybe if it wasn't a specialist, but someone else who has fought the fight and has and can see it from the other side, you know, to talk to people like that and in, in different variances of success and different variables of failures. But it—

yeah, it just allows you to connect with a bunch of different people and/or resources and/or physicians, you know. And they weren't all specific, definitely not specific to Colorado. A lot of them are national.

And I'm encouraged— I was encouraged with the conference, our particular Colorado conference, because it was It was a community that was created to heal. It was a community that was created for validation. And a lot of times I've seen groups that are just about, oh, the evils of the disease, which are important to discuss, but that's just part of your healing journey is the acknowledgement, the recognition of how horrible it is. And how things need to get changed. All right, we got to hear from Patricia V. Smith. She's dealt with disease, her family, her kids have dealt with the disease.

Like back in the '80s or '90s.

Yeah, when it was really, and so she's been fighting it for decades. She's actually had the opportunity to stand before Congress and testify and before groups. She assisted even here in Colorado in getting the governor to state that it was Lyme disease awareness. However, he still stated that Colorado does not receive or does not have Lyme disease. So there's still work to— which is ridiculous, absolutely ridiculous. But you know, there's this whole political game that is getting played, and although that those things are important, whether or not the document says there's disease in, in Colorado or whether or not it's just recognized, it kind It's a whole nother subject that is part of this, but that wasn't the only thing that was spoken. You know, it was, it was about healing, it was about, um, community, it was about forward movement. And those— and that's so— that's hope. That's hope that this thing can change, and it is happening. And, you know, it's so validating and it's so encouraging to see in person, those type of things. Hopefully what we're communicating is doing a little bit of justice and bringing hope to you out there that there is people fighting for Lyme. In fact, we were sitting down after dinner with— or after the whole conference at dinner with all the speakers, and I leaned over to Sarah and I said, the people at this table are the ones that are gonna have an impact and are having and will have are having and will have. And there's hundreds, there's hundreds of these groups throughout the, the world, the United States, that are doing just that. People are fighting for you, and, and it is good to know that.

Yeah, that's true.

People are fighting for change, and they're doing so while hooked up to a port, while in a wheelchair, while hooked up to oxygen. While struggling through other symptoms like MS. You know, there was so many— yeah, you know, the speakers were not 100% healthy. They were actively fighting. And that, to me, that active involvement of fighting against this was so much more encouraging than someone saying, oh, all you got to do is take this supplement and this pill and go through my for my $400,000 treatment and you'll be fine. Like, okay, it was really, really encouraging. And I'm, you know, I'm— I felt grateful and privileged to be there. It was really good.

Yeah, for sure.

So what else happened at the conference?

Well, um, our good friend Stephen Groeters came down for the conference.

Huge blessing. Yep.

Yeah. And for those of you who don't know Stephen, we've interviewed him and his wife Heather a couple times, and then he was also in the documentary Disappearing from Society. If you have not seen our mini documentary Disappearing from Society, Stephen is Stephen Groeters from that. So that was a super fun, um, thing to get to see him, and he's always so encouraging. He wrote me a really nice note right before I went up on stage, and I was actually— which was really sweet— I was really sick. The whole month of May, everyone in our house had this terrible bronchi— bronchial infection and cough that lasted like 3 weeks, really 4. And I had just gotten it the week of the conference, and so I was super raspy. Yeah, I was struggling to be there on a couple different levels. But, um, anyway, so it was really fun to get to see him, but the I think one of the really fun things for me was this was the first time we've gotten to show our documentary, Disappearing from Society, to our target audience. So even when we did the premiere, we had more people. I mean, there's probably, I think, 130 people or so at this conference. But, and when we did the premiere, there's more than that, but it wasn't our target audience.

No, it was family and friends and a few people. There's a handful.

Yeah, and so it was really fun because I was sitting up front. I was trying not to turn around and just stare everyone down, but I was really watching their body language and like seeing how people reacted and stuff. So that was really fun for me, and I was wishing the director Mackenzie Grunig could be there, um, because I knew she would have gotten a very fulfilling moment out of being there and It touches people, it validates their losses, it tells a good story, and it's everyone's story. And that's why people feel validated. Yeah, in hearing it is they've all had— we've all had the same losses, right?

Yeah, I mean, it's been, it's been very successful on Facebook. I think we're at 53,000 views on that, on that video. 14-minute video. If you haven't seen it already, go to limedvoice.com. Or you can go to our Facebook page at Lime Voice and that video is posted there. So it's been really, really, it's been really cool to see all the hard work and over a year of dedication to that film and to see it actually touch people and bring them to tears. That's, that was really nice.

So, so you got to speak Yeah, and that was another big milestone because for me, I still deal with a lot of cognitive issues and fatigue issues and my own, you know, it's still a journey. I just went off of my last medication in January. I'm exercising 5 days a week and doing good on some levels, but—

On a lot of levels you're doing good.

On a lot of levels. I'm way more like, I feel more normal now than I have in a long time.

But big events still totally drain me. Totally drain you. Have a little bit more that used to energize you and you've kind of—

Yeah, now it's just really draining. So for me, in order to compensate for that, I have to prepare like crazy amounts. It— I think to do that 1-hour speech, or it wasn't even, it was 40 minutes and 20 minutes of it was the documentary. So it was only like 25 minutes that I had to talk. I know just in May I put in 60 hours just practicing because of my own, my own stuff. And, you know, that's something I battled consistently for the last 5 years in an effort to be able to stand up on stage and speak. So for me, it was a big hurdle.

Yeah, yeah, it was an achievement, a hurdle. You know, it was the first— it was one of the first times you've spoken in public to that to that extent, right? Yeah. Well, it was a really good speech. Are you ready to give it? You ready to— yeah. Okay.

And it— this was fun for me too because this was— I got to pick what I wanted to talk about. Yeah. And so the title of it is Fighting Is a Mindset, and I mean, that's what we've been talking about for the last 60 episodes. So the—

yeah, yeah, that's— and this is a great, you know, episode 60. Congratulations to us.

Woohoo! Have we talked about that yet?

We did. We said that we— it was episode 60, but we— one of the intentions of this, of recording today, is just to, to be with you and to celebrate, because really Sarah's speech sums up the last 30 years. I mean, her— this speech has taken a lifetime to write, and, and we have gotten to this point, and this is, you know, this really does a good job of painting a summary picture for all of us.

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're 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 Boys thanks Invita Medical for the continued support. Please reach them at 1-866-830-4576.

Hi guys, I want to let you know about a book I wrote called Little Bite, Big Trouble, and I'm going to read a review that recently came in. This is from Carolyn, and she says, thank you so much for writing your book. It has become the means by which I have explained Lyme to my 4-year-olds. They ask for it to be read as a bedtime story over and over again and love that the mama birdie does yoga and juicing like their mommy. I can't thank you enough for writing this book. It has helped my family so much. You can find it today at amazon.com, Little Bite Big Trouble. Hi, my name is Sarah Slickdy Sanchez, and my husband Aaron and I have been hosting the Lyme Voice podcast over the last 3 years. It took me 17 years of going downhill and being completely disabled for many of those years before we got a diagnosis, and I began fighting against Lyme disease. Since then, we just published our 60th episode of Lyme Voice, and since then we have done a short documentary called Disappearing from Society. I also published a children's book called Little Bite, Big Trouble that is available on Amazon. The title for this segment is Fighting Is a Mindset, and no joke, this is my absolute favorite talk because the thoughts, beliefs, and blueprints that you have stored in the back of your mind about wellness, about money, about hope, they will come out in this journey. And it is a journey. If you haven't figured that out yet, it is a journey. There are very few quick fixes. This is an accidental journey that none of us want to be on, but it is a journey. And in order to survive and restore your life, you have to address the social and emotional side of things. And that is what our podcast is primarily focused on, is the social and emotional implications of life with an illness that can span decades. As more and more of your life, your resources, your identity, your careers— as those things get taken away from you, or you choose to let go of them, you get stripped down to absolutely nothing. And it requires you to evaluate every aspect of your life. And so we're going to talk about that— the thoughts and beliefs that we have. Are those thoughts and beliefs that we have pushing us towards healing, us or holding us back. The beliefs, values, and rules that literally control the way you think, feel, and behave will come out. This is just a personal belief, but I really believe that your mindset is the greatest weapon you have in this fight because you need it. So I have a friend who is about to summit base camp at Everest, and he's been training and preparing for it for several months. He's very much a very successful life coach, successful entrepreneur, very proactive, forward-moving individual. And this is one of his goals, which is really awesome that he's accomplishing it. But what I propose to you guys today is that he is doing this out of his strengths. And a lot of— it requires a lot of strength on a lot of different levels to take something like this on. I think that our journey with Lyme disease really is not about your strengths, but really it's more about operating in spite of a severe lack of strength, or operating in spite of so many weaknesses. And so that's just what I propose, is that much of your journey with Lyme is is gonna be— it's gonna come out of weaknesses because so many of our strengths get taken away or they have to be reframed or reworked. So on our podcast, we say that fighting is a mindset, healing consists of choices, and living is the outcome. And so we try to address fight, heal, live on a regular basis. This illness is so complex. You— there is so much you can't control on a daily, weekly, monthly basis. When we say fighting is a mindset, healing consists of choices, and living is the outcome, what I try to focus on is what choices do we have, or what choices can we make. And I'm not proposing that mindset is the only factor involved in recovery. That is certainly not true. But I think it's a really big piece to the Lyme puzzle, and we know people are searching for answers. Just this month, we're currently being downloaded on a regular basis in 37 countries. People are looking for answers because of the complexities of this. The further and further I am into my recovery, and it only took a few interviews to start realizing like mindset played a really key role in the people who are getting better. Mindset played a really key role in them coming out of it. Many of you are familiar with Viktor Frankl. He was imprisoned in a concentration camp and he has a very famous quote. He says, "Forces beyond your control can take away everything you possess except one thing: your freedom to choose how you will respond to the situation." And I have found that that's been so true in my journey with Lyme. There's so much I can't control. The only thing I've been able to control is how, how I respond and the choices that we make in the midst of that. His quote encompasses so much of fighting as a mindset. Because the choices that we do have shape our everyday life. One of the things that I have found so helpful is just to focus on solutions instead of problems. And there are problems. It's not to say that there's not problems. There are huge hurdles that each of us face on a regular basis. But if I focus on the problem, and it's just a little shift in my head between so being looking at the problem and looking at solutions, and sometimes I don't even realize I've switched back and forth, but I try really hard. Is my end goal set on a solution or am I stuck looking at the problem and then trying to jump or work my way around it? I want to tell you about a very distinct memory I have as part of my journey with Lyme. I have these two very conflicting reports and this very distinct memory about these reports. As you all know, paperwork is a very necessary part of life and we have these documents and those documents shape our lives. And the first one I had was a dossier that we did for our international adoption in 2008, and we were adopting 2 kids from Ethiopia. So we spent a couple of months compiling all this information, and they come in and evaluate basically every aspect of your life— your finances, your mental health, your relationships. Can you provide for these additional children? Basically, your home study and all these things Basically, they give you a stamp of approval that says this is a healthy, stable family ready for the challenges of kids with early childhood trauma and other things that can come after being institutionalized. And we— I felt prepared as we were doing this. I was totally felt prepared for the challenge in 2008. Fast forward 7 years, I am standing in my office and I'm opening the letter from the disability office. This is a letter that I had been waiting for. I'd been approved for disability. It had taken me 3 years and 3 appeals, and that— and I had filed 3 years after I had been already basically bedridden. So for me, it was many, many years coming. But I'm reading, I'm standing in the office and I remember it. The tile is cold and I'm standing there reading this 7-page document front to back with describing who I am and what my limitations are and how I can't do anything and all the medications I take. I remember like holding that document and reading about this person. I couldn't believe that the person that this letter was describing, one, was actually me, but two, was the same person and family that only 7 years earlier had been deemed healthy, stable. It just has stunned me on not just that one occasion— that's a significant one for me— but Really, I've been stunned on many occasions at the magnitude of loss that Lyme has inflicted on us personally, professionally, as a family. It's just been terribly destructive. That's what we're up against with this illness. And I hate that in addition to having to fight for my physical health, I've had to fight through so many emotional losses, financial losses, but that's what's been handed to us. And if you don't fight against the emotional weight of these losses, they control you. And I was so tired of Lyme controlling me and how I lived and moved and functioned that I didn't want to give away any of my— give away any power over to sadness or frustration or regret. And so the only way I knew how to do that and not live in that land of PTSD and triggers and anxiety was to really focus on strengthening the emotional and spiritual side of things. Start changing the way I thought about things. And you have to fight to be emotionally fit because life and Lyme are going to come at you. I'm not talking about just positive thinking or positive self-talk where you think positively and all your problems all go away. Don't go home and curl up in a ball and start saying, "There is no Lyme, there is no Lyme, there is no Lyme." No, because there is Lyme disease and it can be very, very destructive. And you have to prepare for the hurdles, prepare for the flare-ups, prepare for the losses, and in a sense determine, "I'm coming out the other side of this thing." And the only way I know how to do that is to build up those emotional muscles. So building your emotional muscles is deciding that while you may not be able to exercise your physical muscles, you can exercise, strengthen, and sculpt those emotional muscles so that your life is no longer controlled by triggers, by anxiety, or by PTSD. And it is not easy when my utilities are getting shut off, or one of my kids is in a flare, or I'm having a flare, or there's financial pressures. Those are triggers for me, and I can feel the life getting sucked out of me, the energy getting sucked out of me, and taking away often with it what, what little joy I had. I had to consciously choose to reject the feelings of defeat and despair and powerlessness, and I had to say, no, no more shame. I'm not looking back. I'm not spending time thinking about what I would have done or could have done differently. I have to just keep looking forward, and I can't tolerate regret and shame in my life. Because when you're on this journey, no one expects to be sick still a decade later, and— or two decades later. And you're constantly thinking, oh, if I had done this differently, maybe I'd be out of it by now. And so it became— it becomes this very— it's very easy to just condemn yourself on a regular basis when you can't get better. So some of the things that we've learned just on this journey is just making conscious decisions to orient ourselves towards health whenever possible. And we're— it's a journey, so there's things we're doing well at and things we're still working on. Some of those decisions are really big and labor-intensive and costly. Like for us, for me, when I went out to Invita Medical to get my late-stage Lyme treated, I also implemented the Gerson protocol, which is juicing and coffee enemas. And I basically did those two protocols for 3 years. And that was very labor-intensive and costly. But some of the decisions that we've made to orient ourselves towards health have been really simple. You know, one of my earliest symptoms was beyond fatigue and struggling to breathe on a regular basis was that I just had really bad neuropathy. And I wouldn't have even known what it was called. Like numbness or tingling, or— but basically it's just neuropathy in a bunch of different forms. And so I, for many years, would have to sit at different points when it, you know, when it would start. And usually it would— I'd have a few hours in the day and then I'd have to put my feet up for a couple hours. So as this began to happen, and on a daily regular basis, I was forced to stop in the middle of the day and put my feet up because eventually I would regain feeling and it would subside somewhat, or I'd force myself to get back back up. But I just found myself having to watch so much TV, and TV that I would have never watched had I been healthy and didn't want to be watching. And I did read a lot. I was definitely an avid reader, but sometimes I— that was about it. It was all I could handle was TV. And then as I got progressively worse, it— those periods became longer, and sometimes I would have to sit for 4 or 5 or 6 hours in a day and try to recover my strength. And so I made a decision that if I was going to be forced to learn, uh, that I was— if I was going to be forced to watch TV, I determined that I was going to learn something in the process. And so I basically quit watching TV for entertainment, crime shows, dramas, and I truly just began watching documentaries, health shows. I would watch some history because I wanted to keep learning and it felt like it was helpful for my brain, but really just focused in on what can I learn? Like, if I have to be sitting here, I want to learn something. Watching health documentaries is not going to cure you, but it orients your mind in a different way of thinking. That's where I started learning, learning about juicing and coffee enemas, which has been huge in my recovery. But it was a little decision. And what I found with— on this journey of healing consisting of choices is that those little decisions stack up on themselves. Specifically, that was a fighting decision that didn't take hardly any effort. It was just a being conscientious of it. Another thing is just trying to use what you have around you. This journey is so long and there's so many things that you could or should implement at all times that it can just be overwhelming. It can be paralyzing. But I try to just say, what can I do right now? What do I have within my hands right now, or this week, or this month that I can implement? And so I, I talk about coffee enemas a lot because they were really helpful for me in handling neuropathy and things that I had suffered with for years with no solutions. But coffee enemas are one of those, and part of the reason I chose to do them is because they're very, very cheap, and that's something I could afford to do long term. What would I have rather done? I would have rather gone to a colonics appointment 2 or 3 times a week, had someone else deal with everything and I just pay the $50 or $70, but I couldn't sustain that long-term. And so using what you have, coffee enemas may not be on your radar, but it could provide a solution to one symptom. That's just an example of trying to use what you have. You— not everyone can— so many people can't afford to implement all that they want. But for me, I just tried to think, okay, what can I try to do long-term? And those things that were more affordable got bumped up the list. Another thing is to try to break the patterns of sick behavior in your life. I am continually astounded how hard this has been for me, but then I was sick, and when you're sick, you— and you're operating with pain and fatigue, you begin to modify your life and make accommodations and changes, and those patterns are really, really hard to break. A few weeks ago, I had a really bad migraine that had kept me in bed for several hours, and I had been vomiting. And so that, for me, there comes this certain amount of suffering where I'm basically just laying there trying not to move, kind of curled in a ball. As I'm laying there, I realize this is a position of suffering for me, and I've spent a lot of years in this position, and I do not want to be in this position anymore. Yes, I have a headache, or yes, I have a migraine and I can't make it go away right now. But I realized at that moment that I didn't want to be in a position of suffering. And you can't always make your suffering go away. And so the next day I asked Aaron, I said, hey, can we just switch sides of the bed? We've been on the— we've each had a side of the bed probably for 15 years now. And most of those years consisted of an immense amount of suffering for me. I thought I was going to have to talk him into it. He was like, yeah, sure, no big deal. So for me, I know that there's gonna come another day when I am gonna have another migraine and I'm gonna be laying there in a ball and suffering. But you know what, I'm looking at a different wall when I'm doing it now. To me, that was more— even though it required a little physical change of switching sides of the bed, it was more this emotional component for me that says, yeah, you know what, this is still impacting my life, but I'm going to minimize the damage and I'm not gonna let this this thing control every aspect. And so for me, I just— it became this— to stop moving from a position of suffering to— it didn't cost me anything to do this, but it— to me, it was important because it was breaking those patterns of sick behaviors. We have to move from a position of suffering to a position of hope. It doesn't make your current problems disappear, but it enables you to receive differently. It puts you in a place to think more creatively about solutions, and it begins to change your day-to-day life. Another thing that you have to be aware of is that you just have to stay in the recovery game on a lot of different levels. So obviously there's different phases of recovery, and you're capable of different things at different times. But I feel like one of the things I see is people who are— they're trying to stay in the game socially, emotionally, financially, spiritually, identifying problem areas And then creating default routines to use when you're in need of recovery from a busy period. You know, this illness is so hard on so many levels, and one of the things Aaron and I talk about regularly is it really, in any relationship, it only takes one person checking out emotionally, physically, financially to start having things fall apart. And what you're doing when you have Lyme is fighting just to stay alive. And so it's really easy for these other areas of your life to get ignored, and that's okay at times for certain periods. But when you are looking at a recovery period of a decade or 15 years, man, that's a long time to ignore a certain aspect of your life. So just encourage you, at whatever levels you're capable, and even recruiting help to keep up with those other aspects of life, because the recovery game of Lyme is so long. So one of the ways that you stay in the game is to develop healthy boundaries and wide margins around your life. And pretty much every author of every book talks about this, but I think it's really important because you do have to learn how to put boundaries around your life so you can heal or your kids can heal. And people don't understand those boundaries. You don't even understand those boundaries. But back-to-back events, end-of-season tournaments, and Too many visitors can leave you feeling worn down on a deep level that most people have no comprehension of. And really, it's up to you to shape and control your day-to-day events. And it is especially hard to do that when you do not know how you will feel from one day to the next. There are so many moments when you can't choose to work on the emotional and spiritual side of your soul because you are vomiting, you're in the ER again, or having a seizure, that is not the time. But when that passes and you're laying in a position of suffering, you can still lay there but tune into something that encourages you, that lifts you up. That might be the Lion Voice Podcast, that might be your favorite audiobook, music, whatever can help you come out of the dark emotional side of this. And when you make those intentional, conscientious choices towards what helps you to heal, you are planting seeds of hope in your mind, and you slowly take back control of, of your life, of your circumstances, even if it only starts on just the internal side at the beginning. So lack is a really serious issue for a lot of households that deal with this illness because it's not covered by insurance. A lot of effective treatments aren't. There's travel, but mostly, I mean, it's just the length of time that you are seeing physicians. So like many of you, LAC has become a very unfortunately normal part of our lives over the last 8 years, and we've just been living on the edge financially for way too many years. A couple of times a year, my kids will come up to me and say, Mom, are we poor? And I always say the same thing. I'm like, nope, we're not poor. Being poor is a state of mind. We are broke. Being broke is temporary, and we are doing everything we know to get out of this. That is the truth. That is just where we're at, and we're trying to treat 3 people for Lyme. It's just a reality for us and for so many other people. Career choices, and even Aaron's job required a lot of travel, and my job in real estate required me to just be on all the time. Both of us, as we have come out of this, have had to switch careers to where we're doing things that— where we can be home more and accommodate the needs of our family, because both of us did do— Aaron especially did a lot of traveling, and that just isn't conducive for our life anymore. And so Lyme has forced us to reevaluate every aspect of our lives because we want to get to the finish line and have everyone be as healthy and whole as possible. And we got to a point where I couldn't be on call, on the phone, real estate-wise, the way I needed to be. It just took too much out of me. While Aaron was free to go and travel, emotionally and physically, I just got to the point where he couldn't leave. He couldn't leave and go out of town anymore because I couldn't deal with everything by myself. And so It's just required us to look at different aspects and different careers. The other day, I'm going to give you an example of lack, not that they're that hard to come up with, but the other day I was— I have like 2 sets of new pajamas and I wear them all the time, like pajama top and bottom, real soft ones. Like the bottom of both of my pants, pajama pants that I wear all the time, were like shredding and falling off. And so I was trimming— I was trimming all the fabric off. I was gonna sew a new hemline on them, and I realized— these are my new pajamas, not my old pajamas— I realized I've already done this. I'd already trimmed them once because they're like 6 years old. This is so like my pajama pants are now pajama capris, and That's because every penny we have had has just gone into treatment, has gone into travel, has gone into supplements, and it's, it's this ongoing thing. And so there are certain aspects of this illness that just suck so bad. Um, but I just have to realize like it's not permanent, and that's what I just tell myself. Like, we're doing everything we know to get out of this. Like, this is the reality and this is We're doing everything we can to get out of it. So one of the things financially that's been really helpful for us is, um, I call it financial soul healing, um, right? It's about fighting for the life you imagined and not settling for the lack and poverty that can come with a long-term illness. Pain is easily the worst part of my journey. It stretched over two decades, was deeply, deeply wounding. But the financial chaos and lack that has consumed our house over the last 8 years has had probably the most extreme ramifications. One of the things that has been super helpful, and we interviewed my dad at least 2.5, 3 years ago on his program called G5T.money. The course used to be held live and it was $1,500. It is now $29.99 a month. Just opens you up to different ideas. It's more about the psychology of money, how you view it. It's not necessarily about money management of any kind. It's more about expanding who you are as a person, as an entrepreneur, if you want to be an entrepreneur versus an employee, and just really evaluating some of those things and figuring out how you could use the talent, skills, and abilities that you have in different ways. Honestly, for me and Aaron to be on the same page, like, after so many years of chaos and him kind of concluding, oh, it'll get better, it'll get better, like, we had to both realize it wasn't getting better and this was our new normal. And we had to figure out a way to earn a living and live within it and still meet everyone's needs. And honestly, this course has just been a huge blessing to us because it brought us back together, both on the same page of realizing after Lyme, like, after realizing This isn't going away. We're probably not going to be able to go back to our old careers for quite some time. What do we do in the meantime? So it's been very, very encouraging. We know several people who have gone through this who have Lyme and other long-term chronic illnesses, and it's been really beneficial for them as well. Another aspect of fighting is a mindset that everyone needs to wear— be aware of is just the fact that suicide is a very real reality within the Lyme world. And for me, when I would think about suicide, I would imagine the extreme pain that I was feeling on and off for almost 2 decades. This was my coping mechanism, I guess. I would imagine taking that pain and spewing it all over the people I love the most, knowing that if I did ever take my own life, that that is what I would be doing to them, is taking the immense amount of internal pain and making it external and making it their pain, knowing that they would be left with guilt and shame and that this event would once again alter the trajectory of their lives. And so for me, my— when I would think of suicide, and you know, everyone is different, everyone copes differently with different things, I'm not saying this is how it should work work or could work. This is just how I coped with it. I just knew that I couldn't— like, so much of my journey had been spent trying not to inflict the pain I was feeling onto those around me, that for me, I could just push it aside. But you just need to know that depression and suicide are really real realities of this illness because of what it brings with it. And for me, when I would get there and find myself emotionally going back to that same thought of suicide or ending things, for me, I knew that I was focused on the problem and not the solution. And so I would consciously try to say, okay, I'm not going there. And not, not everyone can do that, and everyone has a different journey, but whether you're a family member listening for a friend, you need to know that it's a reality. And then even as someone who is suffering, just to know that you're not alone in those thoughts, that what you're going through is very horrendous. Hopefully hearing other people, the fact that they have had those same struggles, is validating on some level. Doesn't make it go away, but it's a battle that goes on all the time. I talk about fighting as a mindset a lot because I really do believe in it and I really do think it's important. I— this is not just a rah-rah speech. You can do it, keep going. You know, I'm still in it. I have had some— we've had some health stuff happen over the last few months, and we're still in it. I went off my last medication in January and didn't sleep for 3 months and was dealing with a ton of anxiety and depression because of coming off of major meds and Like, man, it's really hard. And I, you know, I'm saying a lot of this stuff in hindsight, but I've still had to fight this battle, you know, emotionally many, many times a day, even in my recovery. Even though I'm so much better than I was, there's still this huge battle. And so these just different aspects that we've talked about, those are things I still have to implement Maybe not on a daily basis anymore, but on a regular basis of like, okay, where am I? Where do I need to be at? What, what am I doing? Am I coping? Is this a coping behavior or is this a behavior that is actually benefiting me? And just really evaluating all these aspects of our lives in hopes of putting our lives back together in a whole way where everyone's needs are getting met. And it's not an easy task. I am not saying that this is a mind over matter issue, but what you put in your mind does matter, and it does start to change the trajectory of your life. And so I hope that this has benefited you. I hope that you walk away with something. From my heart to yours, thanks for listening.