101 Honoring Your Reality

Welcome to the Lyme Voice Network. We are chronic illness warriors, caretakers, and advocates who are overcoming illness in all of its many forms. We created this show to inspire, educate, and encourage you on your path to wellness. We're here to help you put the puzzle pieces of healing into place. Join us and our network of Lyme warriors as we discuss how fighting is a mindset, healing consists of choices, and living is the outcome.

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Hey friends, welcome to episode 101 of Lyme Voice. I am so glad you are here. This was a very deep and personal and difficult episode for us to record, um, which kind of blows my mind because we talk about hard stuff a lot on this show. Instead of focusing in on Lyme specifically, we're just talking about the mental health side of what our family has been dealing with. For a long time, but more specifically and intensely over the last 8 months or so. And, you know, healing requires an immense amount of bravery and tenacity, and to shape your life in such a way where you are in control as much as you can be of the conditions that are going on in your life just takes an immense amount of courage and bravery. And and it's hard. So I hope that this episode encourages you that it is worth fighting for, to really heal, to really recover, to come to a place where you're not only on track physically but, um, emotionally and spiritually. So quick shout out to our sponsors, tickwarriors.com. You guys, thank you so much for ordering from our sponsors. It makes a huge difference for us. It allows us to day on air. And tickwarriors.com, they have a spray that we have been using, and it has brought me an immense amount of peace knowing that we're doing this. One of the products they have is called Too Slick for Ticks, and it's a once-a-week application that you put on your dogs or horses. We have two dogs. It prevents the ticks from being brought into your house on the hair. And so it, it exactly what it says. It just makes it slick. It smells good, smells like lavender. It's an all-natural product. And I have just found an immense amount of peace knowing that I don't have to think about my dogs bringing in ticks, um, because we live up in the woods and we have deer in our yard pretty much every day. So it's an ongoing battle. I'm— I've already said this, but I'm far more cautious of ticks than I am of the coronavirus, even though it's shutting down all of our lives. So tickwarrior.com, use the source code LymeVoice, you get 10% off. Um, and I do next step coaching for people. If you are in a place where you are either the patient trying to figure out the next steps or the caregiver advocating for someone I do next step coaching calls, and it's immensely powerful if you do not know what steps to take, to run it by someone who gets the complexities of a long-term chronic illness. So reach out to me. You can email me, sanchesssmile@gmail.com. I'm on Facebook, uh, and let's set up a time to figure out what those next steps are for you. I also want to give a shout out to Justin and Natalie in Connecticut who sent us just an incredible email saying how impactful LionVoice has been to them and the hope and what a lifeline it is. So shout out to Natalie and Justin. So sorry you're on this accidental journey, but you're not alone. That is validating to know that you're not alone, that you're not crazy, and that you're doing the best you can to figure out those next steps. And a big shout out to our ongoing sponsor, Invita Medical in Scottsdale. They have, I feel, saved my life twice now, or saved my brain. If you have advanced neurological issues, it's one of, in my opinion, one of the best places to get care and treatment. So make sure and check them out. Now on to this powerful episode.

If you're listening to this show, you're probably not a fan of ticks or biting bugs. Many of us can't even enjoy the outdoors because of pests like ticks and mosquitoes. You know, Sarah and I realize this in a very sobering way with her second infection. You know, we live in Colorado, one of the most beautiful places in the world, but honestly, we were scared to enjoy it. That's why Tick Wires invites you to come to the green side and join them in the war against ticks. They provide— check this out— eco-friendly products for you, your family, pets, and yards to reduce damage from ticks and tick bites. Learn how to safely protect your family and yards and help battle tick-borne illnesses. Remember, ticks will bite year-round in many places. To learn how you can enjoy the outdoors again, visit tickwarriors.com. Go to episode 92 to hear the full episode about the products. Also, don't forget this: Tick Warriors is offering a 10% off discount to all first-time purchases. Simply add LymeVoice at your checkout and you will get 10% off. Go to tickwires.com today. Welcome to another wonderful episode of Lime Voice, episode 101. And my voice might sound a little bit foreign to some of you because I haven't been on the mic in a long time.

Yeah, you really haven't. Not since last summer, maybe.

Do we? Yeah, it's been a while. Yeah, but, uh, that's what this episode is about. We're going to kind of explain where we've been, what we've been doing, uh, because it is really hard to talk about while you're going through it. And, uh, we're kind of hopefully at the end of some of this, and we're going to tell you more. Um, but most of you have listened to our podcast, you know, we started about 5 years ago. And, uh, at first it was just part-time. You were— we were— I was doing it on weekends and nights. Eventually it kept growing and I started working, uh, one day a week. Yeah, Wednesday. So when we started doing that, um, that was an adjustment, huh?

I wanted to—

you doing there? Hold on, folks, Sarah's looking up something on the computer.

I wanted to see the date of— yeah, 2015, March of 2015. So it's been exactly 5 years that we've been doing the podcast.

Whoa.

Yeah.

Okay, so we've been doing the podcast last 5 years. What? That's—

God, I can't believe it's been 5 years.

So just, yeah, okay. So if you—

So to recap.

Yes.

Yeah, we wanted to just do an episode about us and recap kind of what's happened in the last 5 years because Lyme so changes the trajectory of your life in so many ways and in so many levels. And for years it continues to change. It continues to be challenging. Um, you continue to have to find new rounds of treatment or find new doctors to deal with symptoms, and it is just an immense journey, and we're still on it.

Yeah. And unfortunately, you know, like with the coronavirus now, um, I think the world has seen how broken the medical system is and how it's not handling it. And it's, it's fascinating to watch You know, them not being able to figure out the testing. Boy, that sounds familiar, right?

Yeah.

Not getting funding, not getting the truth, the testing's being bad. Anyway, it's—

it is. Well, and I think what's really interesting about what the world is experiencing is the, the world globally is dealing with a medical pandemic which turns into a financial pandemic, and this is the world essentially. In America has only been dealing with it for the last like a few months and it's bankrupting millions of people.

Yeah.

And so for those households battling Lyme, like everyone else is already— or everyone else is getting a taste of reality in the chronic illness realm, and they've only been at it for a little time compared to Lyme people, right?

Yeah, crazy stuff.

Yeah. So 5 years.

5 years, baby.

In 5 years, a lot has changed.

A lot has changed. We moved up here to Woodland Park.

Yes, when we started the podcast, we were in New Mexico, and now we are in Woodland Park, Colorado.

We've always wanted to be in Colorado.

Yeah, we love being here. We love it. We've said it so many times, it's been healing. There's a slowness and a calmness and a peacefulness that is here.

Well, especially now with everything going on. I mean, we're talking to our sister in big city, they can't go outside. Because everybody's outside.

Yeah.

And, you know, with us, we have very few people around. I mean, we, we went on a walk today and met Jackie and Hope.

Yeah, we met two neighbors.

We did. We kept our 6 feet apart. We just walked along with ourselves, and it was a lot of fun. But, you know, it's been— wow, it's been a journey, hasn't it?

Yeah. And I think the thing that's been going on for 5 years for us is we have been searching for healing. Yeah, healing and wholeness.

Healing and wholeness.

And Lyme took so much from us. We both have had to switch careers. Yeah, um, professions, find new ways to work from home.

We've called it freedom too. We've been searching for freedom because, like, Lyme keeps you captive. Any chronic illness— I mean, the whole world's experiencing it now. Everybody's captive in their house, and everybody lost their freedoms in the last 2 months. They can't go outside, they can't be where they want, they've lost their jobs. And I mean, it's just, it's happening a lot quicker, you know, than Lyme does, because the whole world's seeing it immediately. Even though I would have to say that Lyme is a world problem, like it's a world epidemic.

Yeah, they just don't know about it.

It's not been recognized, and it doesn't happen overnight, so we don't see the shutdowns and all this. But like, Lyme is way more scary than corona. Oh yeah, like, are you kidding me? Corona? Yeah, right. I'm got no— I think we already had it anyway, but who knows?

Who knows?

I don't— I'm not scared of corona, but I am scared of the fallout of this medical system. That's what's really interesting. People seeing the fallout from it. We've known this for a while, but yeah, so we're on the search for freedom, which led us to Colorado. We had some ideas of where it would be, what it would look like. Didn't turn out like that. We thought we were going to be doing one thing here in Colorado, and we ended up not. So here we are, we're still on the search for freedom. We're still on the search for healing, healing, wholeness. And, you know, the last 5 years has been just, just a big journey of that. And we're going to get into more of that, but let's go, let's lead up. You know, we've been here to— in, in Colorado for 3 years. Um, last summer happened, which was your treatment for your infection from the previous—

yeah. I mean, that was a huge second infection. Yeah. Getting reinfected in 2018 was just another massive trajectory-changing thing because I instantly had so many symptoms.

Yeah. Your symptoms returned quicker.

Yeah. And I had different symptoms. I had Lyme carditis. I had a lot. I'm still battling some skin issues and hair issues and digestive. Yeah, digestive. And it's just been, again, gosh, going back into treatment and having to figure stuff out and advocate for yourself. It seems enormous.

The PTSD soldier going back into war. I mean, it's—

Yeah, it is.

I mean, because we both suffered huge amounts of PTSD. That's just from the line. We haven't got into the really hard stuff.

Yeah, there is. There's a lot of post-traumatic stress.

Oh, yeah.

But you have to learn to live with it because otherwise you're always in a state of heightened stress.

And that will kick your butt. Heightened stress eats your body up. I mean, it just does. And I'm, I'm, I can testify to that.

So you went through— So getting reinfected, that was enormous. Making the decision to go after doing antibiotics and several treatments via phone calls and stuff, making the decision to go back out to Invita was just a huge thing. And financially, we're still paying for it.

Oh, yeah. We will be for a while. Yeah, it, it was, it was tough going back there and seeing, you know, redoing it again, both emotionally and physically, financially. Um, just rough. But, and even the treatments themselves, you did some amazing treatments out there. You did apheresis.

Apheresis.

Apheresis. What is that, the blood scrub one?

Yeah, it filters your plasma and your blood and takes takes gunk out, everything, which is supposed to reduce Herxing. And, and it did. I did— it was really helpful. The other thing I did was exosome treatments, and that was powerful. Yeah, I really— it rejuvenated me physically, um, in ways that I hadn't experienced. And I think physically at this point I'm doing better at 42 than 32? Well, 32 I was totally disabled, but I feel actually physically stronger right now than I, I think I have my most of my adult life.

Wow. Yeah, and you look great. Your, your, your body is forming. It's beautiful. I love it.

I'm getting some muscle. One of my goals is to feel like an athlete this year.

Yeah. We just, yeah, we have been marathon runners. We just don't look it right now because we've been beat up.

I think one of the things we've talked about so much is because of this illness, you're putting so much effort into protocols and diet and seeing specialists. And I mean, the amount of discipline it takes, and it just often feels like you don't have a lot to show for your efforts. That's— I think to me that's been one of the really sad things, is I'm like, man, we're working our tails off to recover. We're working our tails off to like figure things out spiritually. We're working so hard to heal and pursue wholeness in this while also caring for people with a lot of different special needs. And year after year after year, it's exhausting. Yeah, it's exhausting to not feel those basic rewards that, whether it's financial freedom or being able to go on a vacation. Yeah, you know, it's, it's just part of the process.

Well, let's, let's go back to our timeline here. We got you back from treatment and you're doing much better now. Yes, we had some— it was bumpy. You did some ketamine treatments that kind of messed you up for a while. Well, not messed you up, but—

Actually, yeah, they were really helpful in like—

But there was side effects.

Yeah.

That were pretty severe and pretty scary at times. Basically, you would black out.

I would kind of black out. Yeah, I had a few blackout sessions after coming home.

Yeah, and it was like you were inebriated, like you were drunk.

Totally drunk.

Yeah, it was weird. And, you know, the next morning I'd ask, "Anne Honore?" You were ornery too. You were starting fights, and I was like, what is going on with you, girl? Anyway, we got that sorted out. It's getting less now. But really, it brings us to the meat of this story, and we— I think many of you heard us talk about, um, our daughter Anadea, who we adopted from Ethiopia when she was 2 years old. She weighed 18 pounds— no, 16 pounds at 2 years old. Severely malnourished. Malnourished. You know, it was kind of like we picked up a feral child. She had never really been held. I was, you know, I'm 6'1", 260 pounds, and I was the only one strong enough to hold this little girl of 16 pounds. Because, well, you were sick as well, but, but still, even your mom was with us and I was the one having to hold her.

Well, this is what's so funny— not funny, this is what is interesting— is I could hold Lincoln because he allowed me to hold him like a normal baby, like a normal toddler.

Where, whether you're two kids, if you hadn't known, 18 months and 24 months, but you could hold Lincoln because Lincoln had a mom.

Yeah, Daya wouldn't let us hold her like proper on my hip, or just— she, from the moment we got her, everything has been hard with her. And it's not her fault.

No.

Um, you know, she was severely traumatized and lived in an orphanage for 2 years and was very malnourished and But yet, like, it happened so quickly that because I did have chronic fatigue and Lyme and all that stuff, but I could still hold Lincoln because he didn't fight me. And so even just to hold her or touch her in any way, she would fight you on. And so you really became— not initially, because for several years you worked outside the home, but It has taken actual physical strength to deal with her every day to either—

and I was doing that. Remember how many times did I take her with me to work? I mean, I'd see my Facebook profile memories pop up of me and Daya at the— you know, it's not a place for a 4-year-old, a wood shop, but You know, I had to because she was— I was the one that was able to control her.

Yeah.

And, you know, it was very quickly on that we realized that we, we couldn't be alone with her, or you couldn't be alone with her for a period of time because she especially reacted to you.

So Daya was diagnosed with reactive attachment disorder. Very early on at like 2 and a half, 3 years old.

Yeah.

And reactive attachment disorder is when a child has gone through extreme trauma or neglect or abuse and doesn't form a healthy relationship with their parent, and it impacts the rest of their life. Now, even when we adopted 10 years ago— it was 10 years ago this year, um, a lot of this early childhood development stuff was just barely being talked about in the sense of it used to be considered like, oh, if you adopted a kid when they were under the age of 2, they had a better chance of coping.

Right.

And right as we were doing our adoption and doing all the post-adoption visits with our therapist and our counselor, really, it was just becoming apparent that a kid who has a healthy attachment from the beginning of their childhood, or as an infant, can then attach to other people. But if those initial— that initial attachment with mom or dad or someone, if their needs are not met and they can't attach to people, it historically at this point makes it to where they really can't attach to anyone in a healthy way. And that's what we have been dealing with in addition to Lyme. Reactive attachment disorder is just as chaotic and destructive and consuming.

Yeah, it consumes the house. Yeah, the energy that it brings in, it just, you know, the all the other kids are on edge. I mean, you remember when you were a kid, if Dad's mad and Mom's mad, you, you stay away from them. And it's not that we were mad, but we were dealing— we had the same energy of dealing with this ornery child. And so you had to be strict, and I became a warden.

Oh yeah, I mean, we've said this for years, that we have felt like we, after adopting idea. We lost the privilege, in a sense, of being parents and had to turn into police officers. Yeah, in the sense of keeping everyone safe, keeping the house running. And what we dealt with a lot when she was little is we could contain her, we could control it.

We, we were physically pick her up and put her places if we needed to.

Yeah. And what I mean Before she started talking, 'cause she barely spoke. She was barely speaking. And then obviously she—

Her only language has been English.

Yes, but it took her a long time. We did 2 years of speech therapy to get her to the point where she could speak. But before she could speak, she just screamed all the time, forever. And I mean, it would be days on end where we could not get her to stop screaming. We could not get her to like, function at any type of normal—

I mean, I thought about taping a pacifier to her, duct taping it on her. Oh, it was bad. Yeah, and it's been like that.

And then she started talking, and then, and then as soon as she started talking, she quit screaming. But we entered—

physically, she was doing a lot of physical assaults too, which like she was always biting and scratching. And yeah, but that sort of ended the biting and the scratching, sort of. Anyway, you know, she ends up— let's go to the fall. It's been a rough ride with her.

It has been hard every day, every day. And it is— it's another mostly invisible thing. I Just like Lyme, people don't understand Lyme and they don't understand the expense and the effort and the difficulty.

Yeah.

RAD is very, very similar.

And yeah, because, you know, around other people, she was— she's very, she's very witty, very smart, and she knew when to put it on and very manipulative, you know. So, so she knew how to look good in front of everybody, but then in the privacy— so it was like that unseen disease again, you know. We know what's going on, right?

Yeah, there's a book called Why— about reactive attachment disorder— called Why Parents of Rad Kids Look Like Assholes. And I read the title and I'm like, oh yeah, because you do become— I mean, it was 5 years ago that I told you, I mean, we've tried, I've always worked from home and obviously I was very disabled for several years in my 30s, but it was 5 years ago that I said, I can't be home alone with this kid anymore. Like, she consumed so much parental effort that I would spend all of my time, either I would spend all of my time managing her, and then I felt like the other 4 kids were just left to cope with life and deal with it because she sucks you in in ways, you know, if she's scratching and clawing at the people in your home on an ongoing basis, you do have to stand in between them.

Yeah, you do.

So it became a point of protection where I said, I can't do this alone. She's destroying She's destroying the atmosphere of the house, the energy of the house, the schedules, the systems, hampering communication. We need two parents home, one to deal with her and one to parent the other four kids.

Yeah. And so what I started doing was I would wake up, uh, really early and get home by 4 o'clock when she would get off the bus. And where I'd work 10-hour days.

You know, so I was getting there at, uh, sometimes you would go in at like 4 in the morning. Yeah, just so you could get home on time. Yeah, so that's been going on for us for a long time. But when I got back from treatment this year—

well, and it should be mentioned that the reason we started— one of the reasons we started working from home is not just Lyme, it was reactive attachment disorder. I mean, and we really never really talked about that, but that's That's the drive. That was more of a driving force than Lyme. Than Lyme.

Oh, for sure. Because, because Lyme comes and goes as far as like you're in treatment cycles, right? You have down, you have 6 spells and yeah, but reactive attachment disorder is always first and foremost. And so it's forced us, it's forced us to change everything, everything.

Everything.

And so this summer, or last year, when I got back from Invita, went through treatment, um, she was home because it was summertime, and she also, um, was about to enter 6th grade. So she's—

and she had surprisingly— when you were gone at treatment, she did really well.

Yeah, that's— so it's very common for kids to kids with reactive attachment disorder to resent the primary caregiver. And she is always much more difficult for me than she was for you, but they thrive on chaos. So when things are calm and normal, they react.

Yeah. So I mean, this summer with you out of treatment, things are in chaos.

Well, so you get back I get back and she literally screams for 6 weeks straight. Yeah, it was screaming at us, screaming at everyone in the house, yelling.

It was, it was—

and at this point we had been working from home for 2 and a half years and we're looking at each other like, wow, we have huge amounts of flexibility. We can navigate all the Lyme stuff, we can get to the appointments, we can do everything that we need to do. And yet she is still consuming so much time and effort that we're literally working part-time because she's consuming both of our time, right?

And that was where we were, you know, for, for those months after. And we said, well, you know, we're going to really press hard into her. We're going to get this girl and, you know, really discipline. You know, we had to schedule. We're going to work with the teachers and It went bad. It went really bad. Like, she's— she became unruly in the classroom. We couldn't control her at home anymore.

So this is what— like, we've dealt with all this dysfunctional behavior. And, um, the other thing is, um, if you have ever had a relationship with someone with a mental illness, that is very similar to how RADs feel because there's no logic, there's very little sense of responsibility, um, and you cannot connect with someone emotionally when they don't want to connect emotionally. Yeah, now they're reacting out of their trauma, but because she does not connect with us emotionally, she does not— she cannot communicate very well, um, or Not that she doesn't communicate well. When she is communicating with you, instead of like having a conversation, she is either manipulating you, trying to control the conversation, or blaming someone.

Right. So, and this is a very common thing for RAD kids.

Yeah, she's to a T. She's— it's not—

she's textbook.

She's a textbook case of RAD, but it's like living with someone with a mental illness and Well, in a sense it is.

It's a mental trauma that she's— she's broken in a sense. Like that, those time when— that critical time when she needed someone and attached to, she didn't have it, and this is the result.

So Jordan Peterson, it's interesting. Jordan Peterson, I've talked about him, uh, he— the author, he talks about the first 2 years being the most important as far as building, building those skills to be able to have an ongoing relationship. And before I got very, very sick, um, I worked for the state of New Mexico doing post-adoption support for families, and similar to what we do for in the Lyme community. And, um, those first 18 months are so essential and critical in developing that skill, being able to emotionally connect, and she does not have it. So our, our hope was, okay, uh, our older two kids have moved out, I'm not in treatment, we can essentially pour more into her to try to get her to function at a better level, right? And so we've dealt with all this stuff at home for years and very few people have seen it or experienced it.

She's always did pretty good at school.

Yeah, she's done okay. Yeah, she, she always ended up being separated. She always ended up having to like—

calls.

Yeah, we've consistently get phone calls and stuff, but she didn't— the chaos, the aggression, the extreme manipulation, and the lack of compliance we dealt with at home. And what happened this fall or last fall was all of a sudden the school was dealing with exactly what we've been dealing with and it was awful. And that started the first week school started. Yeah.

We got called.

All of a sudden we couldn't even work during the school day. We could not consistently have office hours during the school day because no joke, Yeah, the teachers, we were getting sometimes 16 text messages a day from teachers compliant, and she refused to cooperate. She has essentially not— she hasn't done any schoolwork for this year in 6th grade. No. And, and is running away, um, from— was running away from the school, refusing to dress out for PE. Just, she has completely quit participating in her own life.

So we tried, so we decided, yeah, let's talk about this. We're honoring the reality that was a very, very hard decision. So we're going through all this and we start talking about like, how are we supposed to survive this? Because it was—

we weren't working, we weren't getting work done, I was emotionally tapped out.

Emotionally wasted. Just, oh my gosh.

Well, you have a child who is being abusive to adults, to other people, to other people, screaming obscenities to the teachers.

I'm like, what? Are you kidding me? We, you know, I talked, I talked to my son Nathan and he says, Dad, but Dad, we don't do that, you know, like that's not who we are.

And I said, I know, Yeah, I mean, her, her behavior is so extreme and so dysfunctional on so many levels.

We just realized we were outmatched. We had done 10 years and we had— we were outmatched at this point. We could no longer physically contain her.

Well, and it was just so confu— we kept coming back to, we have to honor the reality of what is going on in our lives.

Right.

You know, on a lot of different levels. But with her, okay, she is this all-consuming dominating force that we've flipped our entire lives to try to navigate. And yet it's, it's not working. It's no longer working. And the abuse that we have dealt with in the home was— is now being poured out onto a ton of other people. So even at the school last fall, she literally had to have a one-on-one person walking her from room to room And that wasn't even enough. Then she started fleeing the building. Then she started— and, and again, there's a lot of manipulation and control. So then she was threatening suicide, and it's just enormous. The magnitude of chaos that comes with this illness is enormous. And so I said to you, we need to think about her not living here anymore, which was unthinkable in my mind at that point.

I had sworn up and down that I will never leave this child alone. I will always take care of this child.

And to me, what was interesting is you said I could never forgive myself, right?

Right. But, and then I had to honor the reality of what was going on. I was physically and emotionally taking a huge hit. My health has been really poor for a year. Yeah, at least solid year. And I was— we were talking about earlier as we were prepping for this, and you drop 2,000 pounds on the strongest man in the world, it's gonna hurt him. And we— doesn't matter how strong you are, we have, we have dealt with a huge, a massive burden of sickness and rad and financial burden and, you know, changing everything. I, I, I'm a talented worker. Yeah, I could be making—

if you guys, Aaron's before the necessity to have entire flexibility and different stuff Aaron and his dad, you can look them up, andysanchez.com, and they build high-end, beautiful live-edge furniture. And Aaron can inlay stones like very few people in the world can do. Yeah, except to be, to be an artist is difficult.

Well, you have to be in the shop.

You have to be in the shop.

Yeah, I wasn't in the shop. I mean, I was working, I was getting up at 4 in the morning to do a 10-hour shift. 4 days a week and sometimes 5.

Well, and the other thing that happened for us slowly because of Daya is, um, Aaron used to travel a lot and go do shows, trade shows. If you're an artist, you have to travel. Yeah, it's the nature of, of the business. And I don't remember how many years ago I was like, oh, you can't leave me.

I know. I know it.

I mean, it's just she has been so all-consuming for so long, and we keep adjusting, we keep modifying, we keep— but this fall it was like, okay, we, we are paying an enormous price, an enormous price that we can't pay anymore. Like, it's impacted us financially.

Yeah, it wasn't, it wasn't just— we, we were done. Like there wasn't anything left. And it wasn't even a desperate choice, like, oh, we just can't do this anymore. We started to realize that what we were doing wasn't working for her. Yeah, it wasn't working for us, and it wasn't working for her. So in order to honor the reality, we have to face the fact that I might have to put this girl in a place I'd never intended to. But honoring the reality that it was hurting her. What we were doing for her was hurting her. She wasn't getting better, it was getting worse.

Yeah.

So we have to— I mean, it's not, it's not even just desperation, like, oh, we can't do this anymore. It's, it wasn't working.

It's just calling a spade a spade and saying, okay, we've given all that we've had to give, and it's only getting us this far, and she's not growing and thriving.

Right.

So what's the next step?

And as we looked in that, I mean, that tore me up. It tore me up. I started developing some very severe twitching, which kind of felt like a tremor. What Sarah's explained is a tremor, and it was a lot emotionally driven. So the more emotional I get, the more I would And I would literally jump out of my seat like as if I was being scared every 30 seconds. And it's been like that for months.

Yeah.

And even now as I talk about it, it's infecting my speech a little bit. Um, but it broke me.

It did. I feel— I mean, we've said you've been fighting, uh, I don't know if it's a nervous breakdown, but It's been an enormously difficult phase for you specifically.

Yeah, it's so painful. I mean, this is the most heartbreaking thing, to lose my daughter like this. And she's not gone, but I still can't have that relationship. A daughter even though with my daughter.

Yeah, it's heartbreaking. And the thing, you know, the heartbreak comes in different waves because our plan this fall was, um, we had found a couple of different long-term rehabilitation homes for her. And they exist. There's usually a few in every state, but specifically there is a home in Tennessee that we're looking into. And that was this deep emotional pull of like, oh wow, yeah, just we're gonna send our daughter away and we're only gonna see her probably once or twice a year, and, and it's gonna cost us a ton of money to do it. Yeah, but if With her outside of the home, we then do have the freedom to work more, to grow the business, go get a job, whatever needs to happen. But so as we started to make those decisions and go through the application process to do that, again, she's not cooperating at school. She's fleeing the property on a regular basis. The police have been involved. Um, and Aaron's sister Shalom, who lives about 90 minutes from us in Denver— yeah, she lives about 90 minutes from us— called us and said, hey, let me try to help her. She's always done better in a one-on-one environment. Shalom lives alone, she's not married, she has a home.

And she had actually talked earlier in the year about getting a a, a girl just like Dea, a foster kid.

Yeah, Shalom actually was gonna do some type of a foster, foster adopting of an older kid because she works with kids with, um, she's a special ed teacher, and so she understands the behavior. She works with rad kids who are on IEPs, which is an individual education plan.

Tough too. She's worked with like inner city, well, she worked in inner city LA teaching the hard students.

Yeah.

For 9 years. This, you don't mess with Lomi, as we affectionately call her.

She's like this, I call her a badass, cause she like hiked New Zealand.

Yeah.

She went to New Zealand by herself for a month and hiked and did all this stuff. And she runs marathons.

Oh, all the time, yeah. Yeah, all the time. She's like, she's like, I can count how many marathons, but I can't count how many half marathons and 5Ks. I'm like, what? You're crazy. She's a beast. I mean, in a good way, right? Like, you don't mess with Lomi.

Yeah, she's this super badass chick, but also one of the kindest people.

She knows how to handle those kids.

Yeah, and she's super kind, and she has just this incredibly kind spirit and heart. And so she called and said, hey, you can't send her out to Tennessee quite yet anyways, because it's very expensive to do this process. And she said, let me, let me try, let me help her. And that was a very difficult decision.

Because yeah, we didn't want to— for— we didn't— it had been such a burden for us. We couldn't pass it on.

It felt like, oh yeah, I told her, I said, Shalom, if you do this, in my experience, I know this kid really well. A year from now, she will be the same person and you will have paid a heavy, heavy price to have built into her in this capacity. But through several weeks of talking and a lot of stuff, we were so hopeful. Like, oh my gosh, okay. So she ended up going home with Shalom at Christmas. So we had to talk to her. I mean, Dan knew this was going on because obviously she, the police are involved. She's not cooperating at school at all. She's continuing to run away, like just chaos. And so Shalom, out of the very kindness of her heart, said, hey, I wanna do this. I would love to adopt. I have always wanted to. I know these kids. I, I can take her to work. We have the same schedule because summers have always been horrid having her not be in school. She needs a schedule. So Shalom has fought for her, fought for her, and told her that. She goes, you know, she said, Daya, I fought for you to be here when we moved all her stuff to Denver, which was horrifically heartbreaking to like took us 2 days to pack up her room.

And I couldn't look at her room. I mean, I had the door shut for months. I still have a hard time looking at it.

So at Christmas— so she's been gone out of our house for 4 months now, um, and we are barely healing. We are finding a new normal. We like— there's a lot more communication and Just as a small example, like we couldn't play a board game with our kids and hadn't been able to in a long time. We couldn't watch a movie. She, we call it sabotage, where she would sabotage events and just made, made it so difficult to do anything with her that we just didn't a lot. And so through all of what Shalom was doing, and again, We're already seeing a counselor 2 or 3 days a week. We had started last fall 2 or 3 days a week seeing, seeing a counselor because of all the insanity that we were dealing with with her. And, um, Shalom has a counselor, Daya has a counselor. Like, even though she's out of our home, there was still a huge amount of effort on our part going into providing for her and getting all the necessary paperwork. And what— and for a few weeks, we actually did have hope that maybe she could function somewhat with, with some level of civility, and we could still be a part of her life.

Um, like aunts and uncles, kind of.

Yeah, we felt— I mean, I put a Facebook post out basically saying like, we're switching roles with Shalom. We're going to kind of take an aunt and uncle supportive role, and she's taking over the primary care duties.

And, and that was really hopeful too, because when you're not the person in charge, she doesn't have conflict with you. So maybe through this— and we're still hopeful this will happen— maybe through this we won't be the bad guys anymore and we could have a relationship. Yeah, that was the hope.

That was the hope. The reality of what has happened is she has, um, been horrible and abusive to Shalom, verbally and physically. She has assaulted people. And, uh, when you are in the mental health world and you are at the point where you need long-term hospitalizations in order to not hurt the people around you, um, you have to jump through a lot of hoops and do a lot of short-term, uh, you have to do a lot of short-term facilities before insurance will actually pay for a longer-term facility. Um, but really for Shalom, what started happening right away is Anadea was very abusive to her emotionally, verbally, and physically, and it got to the point where, um, Shalom had to admit her to a mental health facility in Denver, and she is now on her third mental health facility because she has refused to cooperate. Uh, she does— again, they're seeing all the same behaviors that we have all dealt with for these years, and they're not acceptable.

Yeah. Um, so we got a report back from the one of the counselors, and they were saying that all the other patients were getting irritated with Daya and like trying to keep Daya in line because she's so disruptive. She like, she took over the mental hospital too.

We're like, oh, I, I had a call and I said, well, on a scale of 1 to 10, how difficult is she being at one of— at the facility she's in right now? And the counselor said, on a scale of 1 to 10, she's a 10, 11, or a 12.

And I was like, that sounds about right. Unfortunately, that's how it's been.

It's been enormous. And Yeah, it's been enormous. And it's much like Lyme, like it's hard to talk about stuff when you're going through it. Yeah, it's hard to know the words. You're like, oh, how do I feel? What's happening?

You know what? Yeah. And it was— and it's hard to communicate because I know most— unless you are— you've had a, an experience with a RADS child you don't know what we're talking about.

Yeah.

And nor could you, because it's impossible to— you can't, you can't know. I mean, describe the taste of a kiwi, right? Like, you gotta taste it. And it was very, you know, when we talked to Shalom, we wrote out all basically what we told all of you just now, the way she'd been behaving, and Shalom read it and, uh, you know, did the process. But after Shalom admitted her into the hospital, she reread the letter and she was like, wow, I didn't fully understand or believe what was in that letter the first time. And so for us, that was, you know, it's weird to come on and, and, and talk about your child like this, but it has been It's been such a, a moving factor in our life, and we felt like we had to talk about it. Well, one, because it broke me. I've been— I had a mental breakdown, panic attacks daily, and heavy medications that I had to get started on. And I'm recovering now. I'm obviously still traumatized by that. But I mean, I've dealt with— I've been the main caretaker for her, and now I don't have her to take care of either, which is welcomed, but it still has been a process to learn. We've had to refunction without that drama in our life, and even like, it, it— you have to be so brave to heal from things. To heal, you have to be brave. And like, from this, I had to be brave enough to put her in a place that I had imagined would never, never would I do that.

And, and honestly, I don't know I, I've said this, it requires so much courage and bravery to keep going through treatment, right? Every, every person talks about it. Um, you have to be brave to stand up to medical people who are dismissing your symptoms and say, no, there's still something wrong, or how do we problem solve this? And I don't know if, like, through that process of these last 10 years of having to fight for wholeness, fight for recovery, fight for— fight for your life back, right?

Yeah.

Because of those decisions, I feel like I was able to then make the decision for Daya, like, this is not working. We, we're not— we can't live like this. We're not going to live like this. Um, and so That to me, like, we've learned so much through having to fight, but we've carried this enormous burden of Lyme and reactive attachment disorder. And you specifically, like, it's changed every part of our lives, and it feels like we've been jumping every hurdle in hell for a long time now. And that is a very hard place to live. It's, it's not about like positive thinking. It's, it's not about positive thinking. It's about bravery and courage and tenacity and an un—

to fight for yourself when nobody else is gonna understand. I mean, I, you know, I went to the ER when I was having one of my panic attacks and, and, uh, I got drug shamed. You know, they thought I was a drug seeker. The doctor lectured me. I mean, I left the ER in tears. And I mean, it was like my second try at getting healthcare for my mental illness. And you know, or mental break. It's not an illness, but I just, you know, I'm just tired. I'm worn out. Been overwhelmed, and I've been holding up so many burdens. And, you know, we talk about self-care, and like, maybe I should have done more self-care, but I don't even know if I had the option. I don't know if I did. Yeah, it was— you just had to wake up every day and fight, stand up and fight, and you do it again. I did that for too long, I guess. I think caretakers in this journey, we need to remember them. We need to remember the caretakers the ones caring for sick people, because they often pay a price that people don't see, and they don't get recognition for, and they don't get grace for that either. You know, a sick person— you all sick people know you don't get grace when you've been sick for so long. Yeah, and then being the caretaker, you especially don't get that, and it's hard. It's— so I'm recovering now. We've been doing more self-care. I've actually— if you want to see— this has been a bummer episode, but I do some fun— oh yeah, Facebook Lives. If you want to look up Lime Voice, uh, and look up Sarah Schlichte Sanchez.

Oh yeah, on Facebook, Sarah Slick D Sanchez. We've been doing some juicing videos.

Um, yeah, much better spirits than I have now. But, you know, I think we're getting close to an hour already. Let's— we just wanted to tell you guys where we've been, what we've been doing. Obviously, we're going to talk more about this stuff because this has been a real learning journey for both of us. Um, You know, self-care for me, I've had to really— I've been forced to. I was physically broken. I was on the ground writhing in these twitches and, you know, like it was laying me out. Yeah, literally laying me out. But we'll get— we'll get to more of that and talk more about self-care. But you guys, stay safe. You've battled Lyme, you can handle Corona. Uh, obviously wear your masks. We, you know, we hear from you guys all the time that this has been a lifeline.

And yeah, that's what I was gonna say. In the 5 years, there have been a lot of time— you know, there's been times we've said it so many times, there's no podcast police. Like, we have pretty consistently been able to launch 2 episodes a month. Or yeah, 2 episodes a month.

Yeah.

But there's so much more that we want to do.

Yeah.

At times. And then at other times I'm like, I don't want to keep talking about all this trauma. But every week we get messages from new listeners who say, this podcast is a lifeline. Like, you have no idea. It's keeping me alive because no one in my world understands. That's what's going on. And yeah, I—

we know that more than anybody, and that's why we keep, keep going, man. You, you know, we're fighting for ourselves and we're fighting for others as well, you know. I mean, we just— yeah, we'll make it. We'll just— we gotta keep fighting though. Fight, heal, live. You fight You heal, and living is the outcome of that. And it's a journey. It's not pleasant. It's not fun.

I think one of the hard things for me from a podcasting and like coaching perspective is, um, I follow other coaches and other podcasters quite a bit, um, especially in the entrepreneurial realm. And, um, this advocating in the Lyme community is really like a social justice aspect. And it's not— I follow some, I follow some podcasters and coaches who I'm envious of the freedom and the joy that they get from talking about self-help, right? And growing and healing and conquering those financial hurdles and all those different aspects. And yet it's so— our reality is so much different. Like, when I get off of a 2-hour coaching call with a Lyme patient, or the patient's advocate, because the patient can't communicate anymore, like, that's hard. It's hard. It's not fun. It's not like, hey, it's Motivational Monday, everybody drink your water. Like, I wish to some extent that Lyme was easier and we— and funner and like, I don't know, we try to make it somewhat entertaining and focus not on all the horrible stuff, but man, there's a weight to advocating within the Lyme community and—

Yeah.

And yet, because there's such a huge weight, like, that's why we get those messages saying like, nobody understands our world. Like, thank you for giving us hope. Thank you for pointing us towards the next step.

Yeah.

And so in that sense, it's so rewarding, right? It's super, super rewarding. But it's also really hard.

Yeah, yeah. Anyway, thanks for understanding, and we'll be coming on with new messages and new episodes. And check out the Facebook Lives, they're fun. I'm doing juicing and we talk about a few things, and I'm going to be telling some stories. You know, um, yeah, but stay safe, people.

For nearly 2 decades, Invita Medical Center has been leading the way with the latest in personalized treatment options designed for patients dealing with Lyme disease complex. At Invita Medical Center, they offer a team-style approach and the latest technology regarding treatment and testing at an unmatched radical love and care environment for their patients. Call to speak to one of the patient care coordinators today to learn why hundreds of patients choose Invita Medical Center each year.

Hey, Lion Voice Warriors, just wanted to tell you about our friends over at Oval Dogs Coffee. They're a family-owned roastery right in Rio Rancho, New Mexico. Oval Dogs Coffee uses some of the best coffee from around the world, grown by dedicated farmers. Oval Dogs Coffee cares about people and the amazing things that people can do when they're affirmed, nourished, and inspired. Learn more at ovaldogs.com. Go to ovaldogs.com to order your coffee and have it delivered right to your door. Oval Dogs Coffee, loyal to the cup.

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 asked 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. 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 LymeVoice is provided as is without any representations, warranties, expressed or implied. Okay?

Okay.

LymeVoice makes no representations or warranties in relation to the medical information on this podcast. You must not rely on the information on this podcast as an alternative to medical advice from your doctor or other professional healthcare provider. If you have any specific questions about your medical matter, you should consult your doctor or other professional healthcare provider. And for you, you consult your parents, okay? Okay. If you think you may be suffering from any medical condition, you should seek immediate seek 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.