099 Lyme Literate Counselor’s (It’s true, they really do exist!)

If the living becomes deliberate at first, then you have to say, I'm going to choose to do a thing that feels weird but is normal-ish, right? Or I'm going to do something new. I'm going to walk to the mailbox. I'm going to take a walk around the block. I haven't done that in forever. Whatever works. I just feel like that's a super vague answer, but—

Well, you know what?

I think it's true.

That's the thing. Like, we kind of have the same conversation with everyone that we interview. And, and it is so, so often coming down to these little choices, these little micro choices that stack up over time.

Welcome to the Lyme Voice Network. We are chronic illness warriors, caretakers, and advocates who are overcoming illness in all its many forms. We created this show to inspire, educate, and encourage you on your path 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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Hello friends, and thank you so much for joining me today. I am your host, Sarah Slickty Sanchez. I love today's interview, which I know I always say, but it's always true. I took 5 pages of show notes, um, and I normally do about 1. So there was just so much wisdom in talking with Julie from the mental health perspective of battling chronic Lyme and battling it with our kids and kids who have PANDAS and all these other chronic illnesses. You live in a ridiculous world, and I know how valuable your time and your energy is. So I just am truly thankful that you guys are all here with me today, and then also so, so sad that you're having to listen to a Lyme podcast because none of us are on this journey on purpose. It's definitely a journey that gets forced upon you. We are talking about coaching and counseling, which, if you've listened to our past episodes, I am a huge fan of both, um, really of coaching but of counseling when you can find someone who understands chronic illness. And so I'm so happy to bring you this interview. Julie Parker is a wealth of information, has had kids with Lyme. She herself is going through treatment currently, and so she gets it. On that deep level. And you know, there's no easy answers in the world of Lyme and chronic Lyme and navigating the medical system, but there is hope and there is wisdom and there is strength and there is courage within these stories. I love bringing these stories of healing to the mic because sometimes we have to borrow courage from people. Sometimes we have to borrow strength from people or a system And one of my goals for this podcast has been that within each episode, I can give you something that you can take immediate action on, that you can choose for yourself to do something, to change a mindset, to confront a limiting belief, to make that extra phone call so that you are in charge of your life. Trauma— oh man, trauma robs you of self-leadership. It robs you of cognitive and executive function, which impacts your thinking. And I know for myself, I have deeply missed who I once was and the life I once had. And yet it really is an emotional journey that is worth taking purely for your own sanity, for your own well-being, for your own restoration. I know that it is so hard to dig in and deal with so much stuff that you can't control But like the old cliché goes, the only way out is through. And I have just been coming back to that over and over again, that there is a way. Whatever you are up against, there is a way financially, there is a way emotionally, and there is a way spiritually. There is a way to put up a new boundary. And so I love all of what Julie's saying because it comes from so much depth and experience. And I know you guys will enjoy this episode. Let me know. Send me a message. I'm not on social media, Facebook a ton. I just can't— I have to limit how much time I'm on there. But you can shoot me a message, SanchezSmile@gmail.com, Sanchez with a Z. And then you can also reach me on Facebook. But tell me at the end of this episode, shoot me a message and let me know what that one thing was that you could take away from it and implement in your life that day. Because there's something for everyone. So that's my request for this episode, is to let me know what you specifically took away and what you were able to implement, because everybody processes information in their own unique way. So I've been amazed at what speaks to people and breaks through and shifts them emotionally, and I want to know more about that. So send me a message. Let me know something that you were able to do immediately that changed your life in some positive way. Shout out to our awesome sponsors, tickwarriors.com, for protecting your pets, your property, and your people from reinfection. It's not worth the risk. Get covered. Uh, also Medical Bill Gurus. If you are paying money out of pocket, they might be able to help you get some of that back, and you don't pay any fee up front unless they are able to do that. And then, as always, Invita Medical. If you are struggling with neurological issues, man, Invita Medical is a phenomenal facility that can get you back up and functioning on a new level. All right, enjoy this episode. For nearly two decades, Invita Medical Center has been leading the way with the latest in personalized treatment options designed for patients dealing with Lyme disease complex. At Invita Medical Center, they offer a team-style approach and the latest technology regarding treatment and testing at an unmatched radical love and care environment for their patients. Call to speak to one of the patient care coordinators today to learn why hundreds of patients choose Invita Medical Center each year. You can find them online at invita.com.

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 realized this in a very sobering way with her second tick 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: TickWires is offering a 10% off discount to all first-time purchases. Simply add LymeVoice at your checkout and you get 10% off. Go to tickwires.com today.

Welcome to today's episode on the LymeVoice Network. With me today is Julie Parker, who has been a licensed professional counselor in in Mississippi and Tennessee since 2009. She's been involved in teaching, training, administration, consulting, and counseling since 1989. She received her master's degree in educational psychology and counseling from the University of Mississippi in 1994. She currently owns a private practice called Counseling Associates in Olive Branch, Mississippi, where herself and 5 other counselors offer a broad range of services. Julie is a wife, mother of 3, and enjoys, enjoys riding her bicycle in her free time. Julie, thank you so much for being here with us today.

Thank you for having me.

So we got to meet Julie a few weeks back at the Live Lime Summit, and actually I did not meet you, but you and Aaron got to spend time talking together and he was so energized off of meeting you. He was like, we've gotta interview this girl. She's awesome.

He's very flattering. It was nice to meet him. It was refreshing to talk to somebody that's looking for stories of hope and how to help. And just, he just was really positive about so many things, and that's refreshing.

Yeah, you know what, it is, and it's intentional. So tell us, tell us how you ended up in this club that none of us want to be a part of and how you came to understand Lyme and now have incorporated it into your counseling practice, or the complexities of Lyme?

Okay, back in 2011, 2012, my younger daughter— she's my middle child— started changing. Her personality was changing. She had been athletic and energetic and didn't meet a stranger, and she just started changing, and we started looking for answers. Anyway, the shorter form of the answer to that question is going to be Anyway, once we got a diagnosis for her, which was in December of 2013, we were told it was Lyme and started being referred to doctors who maybe could help her. At first, it's a relief. That's the normal, right? You get a name for what's going on. You get somebody who validates you. Something's really wrong. You're not crazy. All that. And then the reality sets in of holy cow, this is a way bigger monster than we knew it was. And I'm actually then at the first Lyme literate doctor's appointment with my daughter in January of 2014. And the doctor says to me, after he finds out what I do for a living, I need you to do some stuff. And I'm thinking it's about getting my kid well, and that's really all I want from him. And he says, no, I need to bring you a stack of information. He brings me a stack of papers, probably 2 inches thick. And he said it's got folders in it and all kinds of things. And he says, I need you to do this because I need a, I need a therapist who I can refer people to. And again, at the time I'm thinking, whatever, you know. He said it will absolutely change everything about the way you view mental health, and it will change everything about your practice. And that was difficult to believe at the time. And then as I started reading through what he gave me, and then I, as I'm continuing to learn about the complexities of Lyme and we're treating my daughter and she's just in miserable shape, I realized that I could do something. And so here we are. I got training from ILADS. I got some training from another group out of Connecticut. I've done as much as I could get my hands on to learn about Lyme from not just the mental health and not just the medical perspective, but to try to marry the two. And it has absolutely changed everything I do.

Wow. And is that just because the complexities with Lyme are just so compounding and the longevity factor? Like, that intrigues me that it would change the way you're approaching everything. Is that because you have a different level of empathy or just Where does that come from?

Yeah, no, I'm only laughing because I'm, I'm kind of hearing your wheels turning, right? Yeah. Yeah, because you already know how complex the illness is. The way it changed everything for me professionally was, yes, it changes empathy. You, for me, what I hear from my patients became different, you know. And way back in grad school, we're taught that the brain is very powerful. It can make us have physical symptoms that manifest as a result of psychological conditions. Well, what I began to understand was, okay, that's true, but the reality might be exactly the opposite or a compounding of those things. And so now when somebody comes to me and they have either an acute or a chronic mental health condition, I start thinking of what's the cause, not just from is there trauma, are there life circumstances, but Is there an organic cause behind what's happening with them? Where before I would have thought, what's your brain causing your body to do? It just flipped it all upside down. And then you add to that the ridiculous aspect of this disease and how isolating and how debilitating and how overwhelming it becomes. That adds its own layer of mental health problems.

Oh yeah, so many. I'm glad you're saying this. It's interesting because we've interviewed Lori Dennis, who is also a therapist, and she wrote Lyme Madness, and we talked extensively about that. She said it absolutely has changed the way she practices.

Yeah, I believe it. I believe it. And I know of Lori— I don't know her, but yes is the answer. Yeah, I just— I think once as mental health professionals we begin to understand that the organic and the psychological are, I think, inextricably intertwined. You can no longer look at somebody as psychological versus physical. You know, ideally, that's— that practitioners would look at somebody as a whole person anyway. But the reality is, I think most mental health practitioners are still generally taught that psychiatric emotional things mostly bring on physical symptoms. Yes, they're intertwined, but the possibility that they're driven by the physical is just not something that I think most people get.

Wow. Well, and that seems so like such a simple concept when you've been down this road. For all of us who have been down this road for so many years, like, of course it's body, mind, and spirit, but you're not treated that way in our medical system. You're not treated that way in our mental health system, right? So we're only dealing with a fraction of what's happening.

Absolutely. And I— if I can, I'll— or if I may, I had a client come in this morning and bring up something, and I I actually not— I don't just see Lyme patients in my practice now. I've expanded to, just by nature of probably word of mouth, hey, this woman will see you no matter what your chronic condition is. So I've got majority of my clients have some kind of chronic condition. Well, a young woman and I were discussing the fact that when you're sick and nobody knows what's wrong with you, you get passed from doctor to doctor to doctor, and often the doctor will say you need a counselor. Well, yeah, you need a counselor because you're dealing with so much stuff and nobody knows what's wrong with you, or they do and they don't know how to support you and all those things. And she said that actually exactly the opposite had happened to her, that she had been passed from doctor to doctor and specialist and all these treatments, and nobody ever said to her, maybe you should see a counselor and get some support. So there's so much involved with anything chronic going on. You know, we, we know, again, as Lyme patients, that this all comes together. Even if you don't know that in the beginning, you figure it out, right? But then the other side is we have people that are being passed through the medical system and nobody's saying to them, you need more support. It just doesn't happen sometimes.

Oh, as you're saying that, I don't know that I ever for years got mentioned, hey, it might be helpful to go to counseling or therapy of any kind. And in fact my story— I was in excruciating pain following a car accident. That's kind of what triggered my debilitating— the debilitating aspects of my illness got triggered by a car accident. But I had been in excruciating pain for more than 5 years before I even knew that there was such thing as a pain clinic.

Oh, that's disgusting. It's just morally, ethically, there's so much wrong with that. But yeah, it's terrible.

Well, and I was thinking, I And then of course I felt bad about myself. I'm like, how come I didn't figure this out? How come I didn't know? And I ended up reading a book written by my pain doctor or recommendation pain doctor called The Pain Chronicles by Melanie Thurnstrom. And she says at the time, this book's several years old now, it was like less than 5% of people who need pain clinics actually have access to them and know that they exist because pain has been viewed in a sense as this on-off switch, like as there's, they were saying that pain is now not just a symptom. Pain can be its own syndrome in and of itself if you're living with chronic pain. So the way they're even processing pain has changed in the last few years, but that information getting out to the public, it's, it's still years in the making.

Oh yeah, oh absolutely. There's just such a disconnect between the medical, emotional, psychological, and it doesn't make sense, but then it does if you've been in the system and you look around and you think these people are not communicating with each other. I mean, how many times have doctors actually had conversations with therapists? How many times are doctors referring you to another clinic and actually have a conversation with even another physician, there's a major disconnect.

Yeah. So, okay, we talk a lot about fighting being a mindset. And so as you are going through the process with your daughter and you're realizing, okay, this is this huge thing that is going to impact not just my own family, but all these other families. As far as I can see, indefinitely in my lifetime, this is still going to be a conversation we're having. So how, what are those mindsets that you start to adapt and implement in your journey that empowered you guys to keep going, empowered you to heal?

Well, I think a big one is hope. And I, I mentioned that to people and they say, well, I don't have much hope. And I, you know, nobody can help me and I'm never going to get better, et cetera, et cetera. Or they believe in the beginning that they'll get better and then they lose hope. And I don't fault people for that in any way. But what I've watched happen is that the people who can find the tiniest, tiniest reason to hope for any kind of positive outcome, no matter what that is, begin to wrap their mindset around that. They begin to maybe think about, okay, It's possible I could do something good. It's possible something could come out of this. Maybe I won't get better, but maybe I can do something for somebody in the process. It's just— so it's kind of a combination of some hope that something somewhere can change. Maybe they help change something in the Lyme world, if you will. But then again, the partner to that hope is doing something. And sometimes with the hope, I think Somebody has to hope for you sometimes, right? Like with my daughter in particular, when she was at her absolute worst, I don't think she had much hope. She'll say she had very little, if any, but as her parent, I was able to say, "Oh, you're gonna get better." It was almost, we joked about it. It was kind of a threat, you know, "Oh, you're gonna get better. You're gonna live through this." But that sometimes somebody can hope for you. It's almost like lifting you up when you can't do it for yourself. But again, I know that's also hard to find. Many of these patients are abandoned by their family or they're even, you know, maligned by them because they think there's nothing wrong because they can find a whole lot of people to tell them that there's nothing wrong with the patient. But hope is big, and then with that, some proactive something can help too. But I will add this, and jump in if you think I'm rambling, right?

No, I like— I have a million questions, but no, I like what you're saying.

So then I actually was discussing doing this interview, I was discussing it with my daughter a couple nights ago, and she said that there was some freedom for her also in resigning herself to the fact that she might not make it.

Huh.

And that's— I did the same thing you did. I went, wait, really? And she said, well, yeah, because there were days, as is also not uncommon with Lyme patients, that you kind of want it to be over. You just are done with the pain. Done with the psychiatric pain and all the things that come with that. But, um, she said, you know, when she began to say, I'm okay if I don't make it through this, that she sort of relaxed. It's almost like the fighting mindset helps— I get that— but that for her, the relaxing of, you know what, if I make it, I make it And if I don't, I can be at peace with that.

Yeah.

And I think that something changed for her in the middle of that too. So I think it's— because what I'm saying is I look for hope and I look for people to find some way they can do something, even if it's not about Lyme, they just do something positive. You know, you can't in the midst of it sometimes, but hope and then being proactive. But then for her, it was that added I'm okay with how this turns out. It's— I don't know, but it was a thing for her.

Yeah, well, you know, for me, in 2013 was when I finally got a diagnosis and went out to Invita Medical, and I was absolutely dying. We did not— I did not know if I was gonna make it home, and I was in a wheelchair. My dad was out there with me while my husband and my mom took care of the kids. And I remember just thinking, if I make it another 2 years, like, we had no idea even going out to treatment if it was going to make a difference because we understood a little bit of what was going on in the longevity factor and how hard it is to really truly recover. And so when you said that she had said that, I thought, oh yeah, I totally get that. Like, for me it was different because I had 5 kids. So I was, in a sense, choosing to fight for them. And that actually was easier for me to fight for them than to fight for myself. Because if I was fighting for myself, dying would have been way easier than fighting and recovering and everything that that has entailed. And so I get that. How do you help? What do you say? We get contacted all the time about of parents who are parenting adult children who are disabled, who cannot go to college, who cannot work real jobs, who have been fired or had to quit every job they ever had year after year because they don't have the physical stamina just to stand and the cognitive function.

So what—

how do you encourage kids when their lives are paused at those key moments?

I don't know that I have a really easy answer to that. I think that sometimes what happens for me is I end up working with the parents to try to encourage them to keep holding up the kids when the kids can't hold themselves up, because the caregiver burnout is also a very real thing. So there's the, there's a caregiver aspect, and the kids need to know that the caregivers are honest with them. I say kids, adult kids need to know that the caregivers are honest with them, but that they're also being vulnerable and taking care of themselves as best they can, because that's a whole other discussion. Caregivers feel so guilty about doing something for themselves, and sometimes reality is they can't. There's no time, there's no energy. But then for those adults children who have just— they feel like they've stalled out. You know, we just talk about what that means for them. We talk about what they've lost. We talk about the grief over— the grief. There's a lot of grief for when you're sick like that. I don't think it matters who you are, but I think the older you are, the more you understand what you've given up, the more grief there is. Be just really honest about that. And then I'll say to then these adult children or even teens, what can you do? Maybe we brainstorm about what you can do. Maybe it's not today, maybe it's next week or next year, but what are your possible options? Because sometimes people don't want to talk to them about that either.

Yeah. Well, and it's interesting you say that you're supporting the parents because I do coaching and about 40% of my coaching clients are caregivers. They're not the actual patients. The patients aren't even at a place where they can focus on their own schedule or figuring out what supplements they need to take or any of that. It's the parents, it's the caregivers who need that support to say it like, keep going, keep trying, keep loving.

Yeah, oh, absolutely, absolutely. And then I also add that, you know, as Lyme patients, our thing often is to research and to look into what's going on with us and understand the medical part. And I get that. I've been there. But I also know that sometimes I will say to both the caregivers and then teens and young adults back off of that some, because I think that we can get in a spiral of hopelessness when all we're hearing from are the people who are so sick and so miserable. And, and that, okay, I mean, yeah, that's, that's how you get, and we all need that support, but if you're stuck in that, yeah, um That's also a detriment. So sometimes connecting the what you've lost and grieving over that with maybe you could have a future and it's going to look different than you thought it would, with also don't keep feeding the negativity into your life. And like I said, I don't want to sound trite about that, that's easier said than done, but I often ask people to get off social media or get out of, or silence if they want to stay in a group, but silence those Facebook groups if all they're getting from that is negativity and they're not getting help, or if it's creating in them as a patient or the caregiver second-guessing. Because I also encourage people to find a practitioner that they can buy into so that they don't feel like they have to use them emotional and mental energy trying to figure out what other, what other treatments they need when emotional and physical energy are already at a premium.

Yeah. You know, you had said something off camera in your email. In the aspect of talking about mindsets, you said be spiritually grounded, know your beliefs and live them. We are hardwired to be engaged in spiritual life. And I thought that was really interesting because our journey, Aaron and myself, we grew up in very religious households. And so that felt like spirituality. And part of our process has been that having this illness has caused us to identify every belief we have ever held about all these different aspects of our life and dig into, follow the theology downwards, or the follow the trail of how does this actually play, how does this idea play out when you're disabled? How does this idea play out when you cannot control your life or your finances and all these other things? And it, It has empowered us in ways I would have never expected. It's come from loss, but it's made us wrestle with all these beliefs that I think we would have held on to for decades had we not gone through this process.

Yeah.

Well, how are you seeing that spiritual side? Sorry, there's a little delay. How are you seeing that spiritual side? Play out in people's lives?

I see a lot of what you're talking about. People start to question things, and I think it's normal when things go wrong. That's when we start to question our beliefs and the world and spirituality. It throws us into that, and some people, it throws them completely away from spirituality of any kind. But that's when I say to them, But what do you believe? Well, I don't know, I'm just really angry. And I, I tried to reinforce that, oh, okay, you know, be angry, be sad, be whatever you need to be, but start digging a little bit. Because I find that when people are working toward being spiritually grounded in their beliefs, it changes your focus. You know, it's hard to focus really, I think almost anything else. When I'm looking into my spiritual life, it's, it's again inextricably, I think, intertwined with our physical and psychological and emotional. It's all together, but we forget that. And whether or not my clients are sick, I urge them to look into spiritual practices and not necessarily necessarily religiosity, because I could go on a complete tangent about that, right? But that's different from being spiritually grounded, because I can go through lots of motions and some of those things have value, but that's different from what do I believe about what I'm practicing, and what do I believe about God, or if there is one, and if there is, what do I believe about that entity, and, and it just can absolutely change your focus. So I think it's healthy, and I think that the questioning that comes with this illness can end up being a really good thing. Like you talked about, where you start asking yourself, well, why am I doing that? Why do I believe that? Where is God? What happened to me? How could this happen to me if these things are what I believe? Why did this happen? And those questions are natural.

Yeah, we— Aaron and I, when we walk, we were just saying it this morning, there's a lot of aspects of religion for us that we've come to see. I call it a no-sum game. I'm like, even if you win, you lose. Because what you're winning, maybe you're living a life that someone approves of or your peers approve of. And I'm like, what does that mean? That doesn't mean anything to us anymore. Like we've had to dig so deep for so long, emotionally, physically, financially, spiritually, on all those levels that it really does make you think, Okay, when your energy is at a premium, right, physical energy, emotional energy, you have to be so careful about what you allow into your life to sustain that and to keep going forward in the direction you want to go.

Oh yeah, absolutely. And then the spirituality, if you dig around in that and you can begin to answer some questions for yourself, I think sometimes the hope that I was talking about earlier comes from that. Because you can say, well, there's hope because I believe whatever. It's not my job to tell people what to believe. That's not the point. You know, people can agree with me or not. I've got my own beliefs. But if you can find some hope in those spiritual beliefs, again, we've looped that back around to this could be good for me. And like you said, I think it changes the way you look at people. You know, when you're this sick had to dig deep to just do anything, other people's approval starts to matter less and less.

Yeah.

And when you have spiritual beliefs, often spiritual beliefs are connected to who am I doing this for, you know? Am I— what am I doing anything for? Is it for me? Is it for the greater good? Is it for fill in the blank? And, and it makes you more purposeful. And then again, you have a mission, you have something you can do, whether that's for your family or for yourself or whatever.

Yeah.

Hmm.

So what are some of the choices that you see people making that lead to healing? And we've already touched on a lot of them. Mindsets are definitely that key factor, but you had said earlier that you have to pair it— those tiny hopes, you have to pair it with actually doing something and taking an action. So what are those actions that you see leading to healing?

Well, I mentioned one of them before, and I, again, I know that all these things are easier said than done, but finding a practitioner or a practice of healing, whatever that is, if that's somebody that you you go to or something you do for yourself that you can buy into so that you're not spending precious energy continually feeling like you have to figure something out. But then once you do, like I said, buy in and do it. And then I really will say though that over the few years that I've been in this, the people that I see that tend to get better and stay better longer or long-term are using a combination of allopathic and naturopathic medicine. I know there are people that will disagree with me. I'm okay with that. You know, I'm not going to tell anybody that comes to see me, you're doing it wrong, because that's not fair, right? You have to do what works for your body. But over time, what I'm noticing is that that combination tends to, to work better.

Yeah. I say that all the time. I'm like, I've heard of people who just took antibiotics and recovered, but I've never actually met them.

Like, right?

Yeah, it's like Bigfoot, finding Bigfoot. I'm like, oh really, you had chronic Lyme and you recovered by only taking antibiotics? I haven't found those people.

But right, and I mean, I've met a few people that got better using only natural medicine, but often they're told by their practitioners that you have to always be on those things. And again, that's, you know, that's up to them if they do it that way. I think a lot of us end up with taking natural supplements over the long term because we learn some things about our bodies that either our bodies can't do for themselves, and we boost our immune systems and we do all that. But yeah, so kind of a combo is what I see anyway, knowing that, like I said, there are people that would say no, absolutely, I only will do natural. And that's great. That's not my decision.

This is just what I Yeah, so let's go back to talking about the caregiver responsibilities, or the caregiver in, in those—

he—

in making healing choices, because this was really hard for Aaron. And I was sick a really long time, and we had 5 kids. We still have 5 kids. So there were days and months where it was literally impossible for him to leave the house for 45 minutes to go out on a walk or do something for himself, but it was also his view of himself and his, his view of his role and that guilt you talked about. So how do caregivers make those healing choices to take care of themselves when seriously 45 minutes may not exist in your day?

Yeah, well, it comes back also to knowing yourself and knowing what feeds you. Right? What feeds you physically, emotionally, all the things we're talking about. Because, you know, self-care is almost— it's almost buzzwords now. Everybody talks about, oh, take care of yourself, and people think it means one thing or two things. But self-care could mean that if, if I've got 30 minutes and the person I'm caring for is asleep and I can watch an inane television show, or I can make a phone call, or I can whatever. That's self-care because you've got to feed yourself in order to keep moving. And again, it's— it may be tiny little snippets of things. It's not— it may not be a spa day, you know, or it may not be a day away to, to do something, but it might be 10 minutes or 30 minutes or whatever to just rejuvenate even a little because, you know, we got to charge our own batteries. And I do know what it's like to feel like, you know, I haven't slept in 3 days and I may or may not have bathed in that amount of time, but my patient's still alive and I'm okay with that. You know, I'll take that win. And then somebody says, well, are you taking care of yourself? And I've thought some choice words about that, right?

Like, you're like, yeah, how do I do that?

Right? But then looking back, um, there were things that on the one hand I was doing for myself that I didn't recognize were those things. Again, it sounds so simple, but I— if I could watch a TV show and it was a brainless television show that took me away from my current circumstance, then that's That's an escape. That's, that's a tiny little vacation from this. And it doesn't mean you forget or you're not thinking about it necessarily, but it's a little minute away. Um, anything like that that you can do that just gives you a second to regroup. And honestly, you know, this goes to the spiritual part too. Looking back in the times that, um, I did go without sleep and I did go without, you know, leaving the house, or I did go do things that I didn't think would be possible to do, or I found answers to things. I think there's a supernatural component to that sometimes too. I think that, you know, now if I go without sleep for 3 days, I'm absolutely non-functional, you know. But at the time, for some reason, I was able to keep functioning. I can't explain that. But again, add to— I think we've got to do little things to take care of ourselves. You can read a book if you can you know, play a game on your phone or something. Things that we don't necessarily think of as self-care can turn out to be, you know. So I mean, I will say this, in having said there's things we need to do to take care of ourselves, I remember more than one instance where I managed to leave the house to go to the grocery store, and because my family was gluten, dairy, sugar-free. We didn't have that stuff in the house, and I bought for myself those little boxed cheesecakes, sat in the parking lot of the grocery store and ate it, and I cried. But it was the— well, but what, you know, I felt better. I thought it was an escape, and then I felt guilty about it, and I was like, no, I have to eat this cheesecake. But for me, it was, this is mine and I'm not sharing it. I know I can't take it home, so I'm gonna have it anyway as an act of rebellion. But it made me feel better.

Hey, you know what? You have to do those things.

I think so.

Yeah, that's neat. That made me sad when I heard you tell that story, you know, because it it does intrude. The illness intrudes on so many aspects of your life that most people can never comprehend. And they compound where you can't even enjoy dessert in your own home anymore because it'll make the other people in the house feel bad. That's, that's so abnormal. Like that, those losses don't just come if you've been sick for 6 months or It, it comes through years.

Yeah. Yeah.

So I know you work a lot with kids and who have PANS and PANDAS, and I'd like to just talk about that for a little bit of time too, because that's another thing that we're just getting inundated with. I was so excited when I found your website and you were talking about PANDAS because I already have a bunch of people to refer to you. Because they're, they're dealing with the medical and the psychological day in, day out, and it is so exhausting. And so it's one thing to have kids with special needs. We have kids with special academic needs, health needs, all sorts of different things. So what are some of the components? How do you help kids deal with some of this stuff?

For one thing, I normalize it as much as possible, meaning I explain to them that they're not the only kid dealing with this. Because often, of course, kids don't have the ability necessarily to go, oh, there's kids in other towns and other cities and whatever, especially if they're not thinking clearly anyway. So I try to get a little bit and say, you're not the only one, and you know, I have another little girl or a boy that I talk to sometimes, or they come talk to me about it. And I talk to the child about the behaviors that they have, and I say, some of that's not your fault. And, you know, we talk about what it means to have PANDAS or PANS. And then I found that sometimes talking to the child and asking that child what makes them feel better, what makes you feel calmer, what, what are things that you're frustrated about, the child can come up with some of their own answers. And it's not that their parents haven't asked these same questions, because they have, but you've got kids— I don't know if this happens to you, but I can have an idea, and until somebody else says that to my child, it makes no sense, right? Kid comes home and says, 'Mom, did you know?' And I'm like, 'Right, yeah, I never thought.' But as a therapist, then that puts me in a position to be able to ask those questions and say, 'Well, do you know what what makes you feel better? And sometimes they do. And sometimes then they say out loud, well, you know, mom says I get really angry and I say things and I hit and I do, and I don't remember that. So then I can validate for the child, yeah, I believe you, that you don't mean to do that stuff. And, and that's maybe not— that's not the real you. The real you would not say and do those things, and the real you wouldn't feel this way or see those things or hear those things that aren't there. And so again, normalizing, I guess, is the best way to put it. Just letting this child know that they are not the only one and explaining the symptoms is a good starting point because it makes my office a safe place for them where they can say, well, I had this bad dream and there was in my dream this thing that had big ugly teeth and it was biting people and killing people and it hurt this person and it chased this person. And, and they're sometimes afraid to share that stuff with their parents. Not that the parents wouldn't be accepting, but it, it just gives them another place. And so some of what I do is make a safe place and let those children blow off some steam, some stress. But then I often also work with the parents and help the parents try to distinguish what part of it is anger because the child is, you know, the child's angry because they're sick and they can't do things they could do before, and they are frustrated, and, and how much of it is driven by the illness. Sometimes we can't tell the difference, right? But, and that's what, that's probably the most frequent question I get from a parent of a child with PANDAS and PANS is, how do I tell the difference? And sometimes I have to say, I don't know. I don't know. Sometimes you can tell, and sometimes we're just not gonna know, and you're gonna wing it and do the best you can, and we'll figure it out afterwards. But You know, for the children, we give them— I try to give them outlets and a place to say, and then sometimes also help them find the words to express themselves to their families or at school or to a peer if they're still able to do that. Many of them are not, of course, but because they don't come— they, if they had the vocabulary to explain it, sometimes they lose that. Because they're not thinking and learn new things and they've regressed. So we help find the words to describe that, and we do some drawing or some coloring, and we talk about what that means. And, and get— giving them a voice just can make a huge difference.

Hmm, I like that. Of course they wouldn't have the words, right? I'm 41 and I can barely figure out how to articulate this stuff, and I've been trying for a lot of years. It's complicated. And that's the big thing, is the rage aspect that we keep hearing about, is the raging, because it's so hard to control. And even for us, we were in a position where I would have thought a kid pitching a fit like that just needed to be disciplined, or their parents weren't controlling them, or so, you know, I had all these different views of what that looked like. And then when you have kids with special needs— and I have a daughter with reactive attachment disorder, and so she explodes much like kids with Lyme and PANDAS and all these other things— and it creates this walking on eggshell mentality. And it's hard to figure out, is it trauma that's triggering this? Is it diet that's triggering this? Is it— what's pushing the behavior that we can't handle? How do, how do we eliminate that? And it's very hard, even with our daughter, to say, hey, we're frustrated right now at your behavior, but not at you. Like, we love you and we're here for you, but we can't— also can't live with this behavior. So we have to figure this out because we're not rejecting you, but you cannot treat people this way. And so crazy hard.

Oh, it is, because like you said, it's hard for us as adults. We can look at other adults and think, what is wrong with that person? Or, you know, what's wrong with me because I can't whatever? But for children, it's, it's magnified, it's multiplied, the difficulty in expressing themselves and understanding that when we're upset, we're not necessarily upset with their behavior. But then the other thing, you know, I'd spend some time explaining to parents, reminding them that they're human, because as parents and caretakers We can— we lose it, you know. We have a child who's pushed the limits and pushed the limits and pushed limits, and we might say things or do things that we don't want to and that we don't know what to do with. And I say to those parents, right, yes, you know, that's what happens. It's okay to apologize to your child, and that's modeling for them that you can go back to somebody and say, that wasn't nice and I'm sorry. I hope that you can forgive me and I'm gonna try to do better. Because then you're teaching your kid that that's okay to do, and that's basic parenting. But when you add the stress of sick children, maybe sick parents too, and, and not having a lot of outlets, it's harder. So I try to get people to have a voice, and I do You know, as much as I can get kids together with other sick kids— I say, I shouldn't say I do it, a support group here, but I think sometimes it's good for one child who's got a diagnosis to be in the room with another child who's got a diagnosis, and it's okay. You know, they interact. Again, I know sometimes they can't interact. There's all the qualifiers and all the things, but Once in a while we'll have a support group and the parents come and they've got kids and they bring those kids and the kids are sick too. But you know what, the kids don't necessarily know that and they interact and to be normal and make us— maybe they can't go to school anymore or maybe they whatever. And so sometimes I know that they all have a diagnosis, sometimes they don't. But I don't know, I kind of wandered away from the point there.

But no, you know what, you're absolutely right because when I first went out to Invita Medical in 2013, it was therapeutic for me just to be around people who looked like me because I, I only knew basically one person who had Lyme at the time, and we had very different issues unfolding. And so when I was around women who had atrophied arms, and when I was talking to someone in a chair and they completely lost their train of thought and like are melting in a puddle in the recliner, Cognitively, you're like, oh, I'm not alone. Like, it was healing for me to be around other people because so much of my shortcomings or my illness were— it was all in my head because I had been sick for 20 years. I didn't know what it felt like to live in a normal body anymore. And so then you judge yourself when you can't keep up, or at least I did.

I think, I think that's common, right? Because it's back to that, you know, who am I doing this for and who am I making happy? But then also, what is normal? If you've been sick for so long, that is your normal, and you don't know that everybody else maybe isn't struggling the same way you are until you come crashing down to the point you can't function at all, and then you're isolated, and then you don't have anybody else that looks looks like you to talk to. And so absolutely, as much as we can be with somebody who even kind of gets it, it's validating. It's just to be careful not to get stuck in that we're never going to get better thing. It's the— but yeah, no, I think it's validating to just know. And as much face-to-face as we can, as we can give to each other, because, you know, when you're that sick, sometimes you can't leave home. Sometimes you can only go to the doctor. Sometimes people don't come over, you know. But healthy people, that's different than interacting with somebody else who can say, oh, you can't raise your arms over your head either? Oh, you fast and you pass out? Me too, you know, just whatever. Or, you know, oh wait, you, you felt like there were things crawling on your skin and nobody put you in the hospital? Or somebody did put you in the hospital for that, but there was— that was not the problem? Just, it's very validating. And we forget, I think, that that same thing happens happens for kids.

Hmm, yeah, probably even more so. So tell us about your support group that you lead, because you do it at your clinic. Tell us about your clinic and your support group.

Okay, well, the support group started 2 or 3 years ago now, just out of— there was not anything that I was aware of for sure in the North Mississippi area, kind of west. And there is another support group in person in West Tennessee. It meets north of Memphis. So my office is just southeast of Memphis. So there's another group in the area, and some members go to both groups when they can because we do different things, that we meet at different times, and that's on purpose as well. But the support group really was just a way for me to offer something to give people when they could get out of the house, right, the opportunity to to be in a room with other people. And it's always a come-as-you-are meeting because I don't— you know, you can come in your pajamas. We don't care what you look like. We don't care any of that. Just come. And sometimes it's been 2 people and sometimes it's been 10 or 12 people, but that's okay too. Yeah, it's just another— it's a way for me to attempt to give back. And we welcome people's families. If they want to come too, because if your family's willing to just listen or ask questions, because then that's validating for the patient to know that my support people or person— it doesn't have to necessarily be family or friends, somebody that wants to learn is willing to come. Now what they do with that afterwards, that's on them, right? But we welcome those people as well just to try to get a different conversation going too. And then the practice that I have, I'm the only Lyme literate practitioner, but in bringing other people on board with me to work with me, the number one thing that I asked of them professionally was that they be willing to at least be accepting of Lyme, and I gave them just a basic, here's our story, kind of. And if somebody comes in and they have these weird symptoms, or if I am seeing one member of a family and they have another family member who needs an individual counselor, or if they need couples or family, whatever the— however we work together, that if they come to you and say, oh, I have Lyme, that that is something you have a basic understanding of, so that we are hopefully as safe place for Lyme families to come.

Wow, that's huge.

You know, the sad thing is that, that, that's huge. You know what I'm— it's sad to me that that's huge. I'm trying to get other practitioners on board. There's a couple here in the area who are listening, who are starting to ask different questions, starting to look at mental health a little differently based on me harping on them Or they've had a client who deteriorated rapidly for no other known cause, and they've started being willing to listen a little more. But in our, in our practice here, the idea is that we're a safe place, and we have somebody here who— we have different people who do different kinds of therapy. We don't have the same therapy style. Also, that's on purpose. And we're very holistic. That's another thing. When I bring people in, I would jokingly say to them, you know, if you join me here, you're going to be working with the crazy Lyme lady, just so you know. And they, they at first usually don't really know what that means, you know. But we sell a limited amount of natural supplements, a lot of natural medications too. Initially, that started for two reasons. One of them was my son, who was also diagnosed and now healthy, was prescribed, if you will, some natural things as a part of his treatment. And having been to conferences where these vendors had things set up and they said, hey, do you want to sell our stuff? I contacted the ones that my kid was going to be on and, you know, their, their stuff. And I said, sure. Are you really willing to do this? So I did that honestly and partly out of selfish motives because I thought, what the heck, you know, if I can get it for a lesser price. But then what happened is other Lyme patients started saying, so can you get hemp oil? Can you get CBD? Which now is really common, but even 3 years ago wasn't as common, right? Can you get— can you get colloidal silver? Can you get Nutramedics products? You know, just different products. Can you get those? And I said Well, let me try. And so we do some of that specifically for our Lyme patients so that they can just walk in if I've run— if they run out of something, you know, oh, you have this supplement? Oh, absolutely. Let me get that today. And so it's not really even there as— it's not, oh, I'm going to make a ton of money off of this. It was first, maybe I can save myself a little money, and then it's become a thing that we can offer to our patients. And then And I actually see that as a positive for another reason, and that is that we have a display out in our reception area where the products— they're just on display there. So we have people who might not ordinarily be open to natural things ask questions about those. So that changes the conversation too. And then they say, well, why do you guys carry that? So then people that might come see us who have no connection to the Lyme world get a little, a mini, hey, wait, why do you— because of Lyme. And what's Lyme? And we didn't know— I didn't know there was Lyme here. But turns out most people do know somebody with Lyme. That's the weird thing with the whole medical, right? Anyways, that's probably more than you wanted, but that's, that's what we do.

That's awesome. Well, and it's— it— that becomes a wealth of knowledge. Like, you practice on your own bodies, you practice on your own people and your own families, and you realize man, there's some really great alternatives to traditional medicine, even with dealing with the emotional side of things.

Absolutely. Absolutely. Yeah. So yeah, we, we try to practice what we preach. That's the thing. We try to practice what we preach. We're not successful, but we try really hard.

All right. So let's get into living. And when we talk about living, living being Fighting is a mindset, healing consists of choices, and then living is the outcome. And I've been toying with this. I'm like, okay, is living the right word? And I'm like, it is living because so for so many years a lot of us existed.

Oh yeah.

And there's a huge difference. If you have not seen the little documentary that we did called Disappearing from Society, it's at lionvoice.com. But in that documentary I say when you have spent years trying to survive, you forget how to live, how to laugh, and how to love. Because I did not— I remember literally not having the energy to laugh for like 6 months and feeling myself laugh like a full belly laugh, and it felt abnormal. And so for me, part of living is I had to go back and start saying, normal— this is what normal people do. Normal people have fun in this environment. I gotta have fun in this environment. Like, just so basic. So what are some of those living choices that you see people making? And whether that's like a day-to-day choice, sometimes that's little, like I'm gonna choose to text a friend or walk to the mailbox or something, but it could be way bigger than that too. What are some of those things that you see in unfolding?

Well, I'm not even sure how to answer that. I mean, I have a thought process turning, turning in there. So one of the things that I consistently— another thing I consistently see is that people don't know what— they don't even know, like you said, they don't even know what normal is. They don't know how to live again. And so many of our Lyme patients didn't think that was going to be possible, right? So you've grieved all these losses and you've been so sick and so debilitated and you begin to think, maybe I'm not going to be okay ever. And then when you start to maybe think that there's a way to live and there's a way to do things, there's so much psychological stuff there too. There's guilt because I'm better and I'm trying to live again and I know so many people now that aren't and they're still sick or maybe they they didn't get better or whatever. There's major guilt even in the living. So the, the things that are done for living, whether they're like you said, I'm able to laugh, I'm able to go do something that I used to do, or I found something new that I want to try and that looks interesting, I'm gonna do that. It's terrifying if you haven't done stuff like that for a long time, but there's also guilt. What if somebody else can't do this? And then there's the, the living part is it's not just regaining some kind of sense of normalcy and what that is, but it's you— it's playing that out in the, in the day-to-day of, I'm gonna set a boundary with somebody, right? You may have had to— those boundaries, you may have, you may have lost people along the way, right? And they may try to come back into your life as you're trying to live, and they're like, oh, you're great, let's go do the things. And so sometimes living includes saying, I'll be nice to you, I'll be kind, but I may not have a big relationship with you. And that's living. And that's living differently than you would have if you had not had Lyme in the first place, because you didn't have to know those boundaries. You didn't have to know who would stick around and who wouldn't stick around. And so it's being deliberate about what I do going forward. It's being deliberate about who I associate with and what I do that's healthy for me. And maybe you get new habits and you do new things. And I think it just looks so different for different people. You know, for me, for me, it was absolutely, you know, it's, it's what I do every day now, and I can't imagine not doing that after kind of digging out of that hole with my kids. And, and I'm actually in treatment now. And there, even for me, I'll— I'm going somewhere with this, I promise. I'm with you. Um, you know, am I sick enough to treat? And then my doctor will, will kind of go, what, what are you talking about? Yes, you are. But we compare ourselves, and so we have to figure out as a patient, what is living gonna look like for me? And some people, you know, I've known people to find entirely different careers. I've known people to, but you may be one of those, right? I've known people to change little things they do or big things they do. And just, I think if the living becomes deliberate at first and you have to say, I'm gonna choose to do a thing that feels weird but is normal-ish, right? Or I'm going to do something new. I'm going to walk to the mailbox. I'm going to take a walk around the block. I haven't done that in forever. Whatever works. I just feel like that's a super vague answer. But, but you know what? I think it's true.

That's the thing. Like, we kind of have the same conversation with everyone that we interview, and it is so, so often coming down to these little choices, these little micro choices that stack up over time. And a lot of people have the strength or resources to not have every decision matter. And when a lot of that strength or cognitive function or resources— when those things get taken from you, you do have to learn to function differently. And boundaries are a huge part of that. The boundary that you need for your own spiritual growth, the boundaries you need for your own physical healing, the boundaries that you maybe lost or levels of communication with people and you want to restore. It's a whole— it is that whole psychological balance of— I, I find it too, like knowing where I want to be, having lost so much, knowing where I'm at and knowing where I want to be, and then living in that delta where it's— you're trying to move forward and embrace and not live in fear and you know, all those things, and yet you're still working through really serious cognitive things and really serious physical life-impacting aspects of your illness. And so boundaries do come up over and over again because without them, without them, you can't heal, I think. I don't know. I just you need way more boundaries than most people do.

I think so. And I think that if, if we're— if we learn some things about boundaries through the illness and then through healing, we do learn to be much more deliberate about our day-to-day. You know, at first maybe it was deliberate because I couldn't make decisions, and I did only have enough energy to make a decision about one thing or two things. But then in practicing that going forward, you just— it can just make you much more deliberate about day-to-day life. Doesn't mean you can't be spontaneous and enjoy things or whatever, but it just makes you, I think, appreciate the people and the way to do things and what you do with your time and energy more. Of course, you know, I also know that I see Lyme patients that are often, you know, we overdo it, right? We finally have a good day. We go crazy. We're like, wait, I have energy? I'm going to do all the things. But in that still, there's a learning about pacing ourselves and, you know, spoon theory, which I think a lot of Lyme patients know about, and just really choosing what we do and who we associate with and choosing to not put up with the negativity that we don't need. That's not to say everybody's got to be happy around you, right? But I think we're less likely to get sucked into that. I think that's a healthy way to be anyway, to just choose. That's a boundary. Make a choice about, I'm going to live and this is how I'm going to do it. And to maybe, as we started the conversation, care a little bit less about what everybody thinks, but care about the, the reason, the why, the reason that I'm doing this, and who am I affecting, and what's good for me, because I got to stay healthy or try to head towards healthy, and what's that gonna entail. Yeah, it all goes together, I think.

Yeah. I know. Well, you said it. I mean, there's, there's no easy answers in any of this. And so there is levels of vagueness or ambiguities that come out. And but that's because that's what we're dealing with. There's, there's no silver bullet yet. Maybe there won't be. I don't know.

Yeah, go ahead.

Let me ask— I, I'm approaching way over my time limit with you, but what do you think— how do you think people are gonna look back on Lyme disease in the year 2040? Where do you think we're gonna be at in the year 2040?

I would love to confidently say that everything will have changed changed. But I am acquainted with a few people who have been in the trenches with this already for 30 years.

Yeah.

And they will say that so little has changed. I think that the beautiful outcome would be that we keep talking and we keep moving and we keep educating people and that in 20 years people find it hard to believe that this was ever a discussion we had to have. That'd be fabulous. But, you know, there's— I'm stammering around that one because that's what I want.

Yeah.

But history has not as yet shown us that. And in having conversations with people who have been doing this since before you could get on the internet and before you could just search something and whatever. They also have one woman I'm thinking of in particular, she just hoped, but the reality of that, who knows, right? I mean, I think that Chris Newby's book shook some people, the book Bitten. I think that her professional credibility and the story that she's telling maybe can be a big piece of change here. But then also, I think that we have to know more about treatment and we have to get more mainstream doctors to understand not just that the illness exists, but that it's very complicated and that they need to work with other practitioners. And we also need to get, you know, I'd love to, I'd love to at least have a tremendous amount of mental health practitioners look at mental health differently, because I think so many of us have it backwards because we're taught it backwards. You know, right, students now are taught more an integrated view of you got to look for maybe there's something else going on, but I'd love for that to be a norm. And I kind of think that's easier than even just getting the physical change to happen, you know, with the— I say that with the with the physicians.

Um, yeah, just knowing how long it takes things to shift. This is— I've been asking this question to everyone I interview lately, um, because when you do read Chris Newby's book Bitten, I remember, I mean, I highlighted half the book and just did an interview with her, but I'm like, they've known, they've known since I was born and very little has changed outside the internet, which is where I started finding answers and solutions and stuff. But the internet has changed. But the actual, you know, we're talking to people all the time who it took them 5, 10, 15, 20 years to get diagnosed or 5, 10, 15 years of treatment. And so when you factor just the financial costs plus the frontline educating the doctors and how long that education system takes to change. To me, I'm like, I don't see a lot. I don't know. I hope by 2040 that when you walk into your primary care doctor with a bullseye rash, they will actually give you antibiotics. But that is not happening in very many places here as of now. And we all have Google, like Doctors don't like Google because it's doing part of their job for them, and part of that they don't have— they have 15 minutes with their patients and all they have to offer is antibiotics. So it's a— there's a lot of barriers in there, but to think that it's gonna become easier, I don't know, I don't see that happening.

Yeah, I'm with you. That's why I said I'd like to be optimistic, but I'm not really holding my breath But I will say this, I've noticed a pattern that when Lyme patients get better, they leave behind their advocacy sometimes. I would love to see patients that get well stay in the game, right? So I had this discussion with other mothers actually in an online forum where we talked about Where are the moms of the healthy kids? They're gone. And on the one hand, right, they don't want to have to deal with it anymore. They're tired. And I don't mean everybody has to stay in it, but I think that we might see more change if when people get well, they're able to have a conversation about it. And I do know as a therapist, there's trauma there too. You know, that's something you got to work through to even be able to talk about it sometimes, right? You need to get some space between you and the illness, and you need to live a normal life and figure out what that looks like. But also, those parents and those patients— to get more of them in a place where they can stay in the game and speak up for the people that are too sick to do anything else about it could make a tremendous difference. Hmm.

It's hard. I've been on both sides of this. I've been healthy and still advocating, and then I went back into treatment and had to readjust what I could give or what I could do. And the psychological side of advocacy, when you have already suffered for a long time, you know, for us, we started the podcast because we just, we want to stop the suffering, hands down. Like, there's so much needless suffering that happens without the right information and without access to resources. But it's, this is a tough community of people and I was a professional advocate before ever getting Lyme. I have a background in helping parents go through post-adoption stuff. And so I have a lot of training and background in it. And this Lyme realm is just very different. It's, it's just, it's just complicated on so many levels. But I think you're right. And What blows me away though about so many of the advocates that we've interviewed is that they really do want to give back on so many levels because it's taken so much. And so even though it consumed 10 years of their life or 15, they're like, yeah, I want to make sure no one suffers like I did.

Yeah. Yeah. No, agreed completely. I think those of us that stick, stick around, that stay in it, we're passionate, that you have to be that way to be able to stay in it. And I do understand why some people just have to step away from it and they never come back. But if— I think if more people were able to just stay in it a little more, give it a little more energy, we begin to have a tidal shift because there's more energy pushing into it. Because I see tons of people speaking up and trying to do what they can from behind a computer screen, and absolutely I'm for that. I mean, I found tremendous support in that. But when they get well, they, they tend to go away, I think. And like I said, I get it on a certain level, right? I do. My own daughter, who was the sickest among us at my house, has said, I don't want to talk I don't want to have a conversation about it. I don't want to do anything about it. And she's only just now willing to go there because when she talks about it, she says, I don't want to think about how horrible that was. I know how horrible it was, but I don't want to talk about it with anybody. So I do understand that as best I can. But I also, I will add this, that really it's a pet peeve and I don't know that it's a criticism, but I would love for our Lyme advocates to be able to have conversations with each other and, and have it be okay that we don't agree about everything, right? That would help change too. I think that we're all in it for the same reason. We all want people to not— like you said, we don't want people have to suffer anymore. We wanted people to be able to have answers. We don't have to agree on what the answers are.

We don't. Yeah, I agree. We've taken that stance. And we actually have a lot of conflicting interviews coming up, like, from different groups who we haven't interviewed because I don't love their tactics, or I don't like operating in a negative way. Like, I think we can all do what we're doing without shoving anyone down. Like, we can all build each other up even if we don't agree. But one of the interesting things— we've been going to different conferences and stuff over the last 5 years, and not only is it okay that we don't all agree, the physicians who are leading the conferences don't all agree with each other. And so that's blown my mind. After the Live Lyme Summit, I actually sat with several of the speakers and asked them a series of questions, and I found pretty much across the board that they did not agree with each other on anything. I mean, they respected— okay, this person's a researcher and this person has this perspective, and Chris Newby spoke and did her thing. But I'm thinking the physicians don't agree, the support groups don't agree. Like, that's okay if you get hung up on it. It's not— but that's the ambiguity and of kind of what we're dealing with is there's not one right way, right?

Well, there, there, there can't be one right way. There's no two patients that are exactly the same. There's probably not two patients— well, there's probably two, but you know, like there's people, there's patients that have the same infections, but if you put 10 people in a room, we're not going to have each of us the exact same infections, the exact same genetic issues that would either assist or impede healing. You can't— I don't think there's any way for us to all do the same treatment. There's not any way for us to all agree that it has to work the same way. I would love, I would absolutely love to see more people get together and say it's okay that we don't agree, but we're going to be in this boat together. And I think that sometimes that the lack of that maybe impedes our progress. I don't think that anybody, well, I would like to think that everybody that's in this is is in it for the same reason and the right reason and that we'd be okay to disagree. That's not always true, you know that. But yeah, it's a frustration, but I don't find it a game-ender. You know, it's just, that's a hope, I guess, if you will, for me, that more of us say it's okay that you don't do it like I do it. And it's okay that your infections are different. And it's okay that you're more psychiatric and you're more physical and you're a combination. And, and it's all— we're all sick and we all need help and we all need the advocates and we need them to work together. I think that is huge. But so much, so much of the time I don't, I don't— I see them at odds with each other.

Yeah, so that's a waste of energy in my opinion. I'm like, I don't have enough energy to do what I want to do yet in life. I am not gonna argue with people. That is a complete and total waste of my time.

Yeah, well, that, that's still— it speaks to the whole conversation we've had, which is being very deliberate and setting boundaries and using your energy wisely and choosing what is helpful. Just making those choices. Sometimes you don't know what they are in the beginning, but it's making those choices, having some support, whoever they are. Yeah.

So Julie, where are you finding your inspiration from these days? Where do you go to build yourself up and to stay focused and motivated?

Honestly, I think that my clients are a tremendous motivator. They're a tremendous motivator because when they come in and say that they in any way feel comfortable and that they can unload what they're feeling or what they're thinking, that's a motivator for me. It really is. I don't always get it right. Oh my word, I get it wrong sometimes. But when somebody— when I feel like I can at least let somebody feel comfortable or work something out, that's a big thing for me because I know that I am in no way going to single-handedly change the world. But if I can make the tide start to shift where I am in my area or for one person in any kind of way, and sometimes I don't even know what— I don't know that it's anything I'm doing as much as it's just a spot where somebody can feel comfortable. That motivates me because that feeds me, right? That's my thing. That gives me some energy because something good has happened, whether it was because of me or not. Right? Something good happened. And then the other part of that is I am Christian and I spend some time in prayer and some time in Bible study, and I find that I have to go back to that. I do try to practice what I preach, right? When I talk about spirituality, clients will— you know, I'll say to them, you don't have to believe like I do, and I don't usually just right out tell them what I believe, but if they ask me, I'll say, if you really want to know, I'll tell you what I believe. I'm okay if you just agree with me, but I have to, I have to have that. That's my grounding, you know. I like to know that I am as centered as possible. Yeah, that makes a tremendous difference.

Yeah.

So there's that, and then there's also my family, you know, keep things moving.

Yeah.

And questions for myself or some other people and try to give back.

Awesome. You know, it was interesting, so we are newish to Woodland Park, and I just got finished going through 15 months of treatment because I was reinfected last year, had finally recovered and off all my supplements and got reinfected. So the PTSD aspect for me this whole second time around has just been so emotionally draining. But I did not want to start seeing a counselor because I didn't want to expel all that emotional energy to have have someone not understand what I'm talking about. Like, to me, my energy is so precious. And so I was brave and I re-engaged and I, I'm like, okay, I know I need this. I need to do some EMDR training. And, and I told her in my first initial consultation with this new counselor, I think it's gonna go okay. But I'm sitting there telling her, she's like, okay, well, what trauma have you been through? And I'm reciting 22 years of pain and suffering and trauma and having kids with special needs and kids with their own pain issues and juggling all of that and changing our careers to accommodate all of this. And she just looks at me and she's like, holy shit. That's what she said. And I'm like, I knew you were going to say that. That's why I didn't want to come talk to you. Because it's so much, right? It's not what the average person is dealing with. It's so much harder. And, and yet the only way out is through. And so you, you know, I don't want to be there. It's pissing me off that I'm spending time and money and energy every week now in therapy for myself and with my daughter who has a lot of stuff happening. And I'm like, emotional energy is just huge. I think she's gonna be okay, I get it, but I'm like, that's— that's having a therapist look at you like, I have no idea how to help you. I've been in that position a lot. I've talked to therapists who don't get Lyme. And so I'm so thankful that you gave us your time today. And you do Skype coaching sessions, correct, for people who are outside of your area?

Right, so I can do some Skype coaching because of, you know, this legal stuff, rules and regulations. I don't do Skype counseling. That's a thing that I may be able to offer in the future. Right now I don't, but I can do some coaching. You know, somebody says, I just want to talk to you and, and tell you what my decisions are, and can you help me try to work out a decision tree? That kind of coaching stuff, like, what do you do? That kind of— yes, I can do that, absolutely.

And you won't look at people like they're aliens from another world.

No, because I'm alien too. Yeah, okay. No, of course not. And, and I will be the first one to tell them if I don't understand something and I don't know what's going on or whatever. I tell them from the beginning, let's have a conversation. I don't have all the answers. If I don't know what's going on, I'll say to you, I don't get it, but I'll do my work and I'll try to get it. But the more I work with chronic illness, the more I see that there's a common thread., and that is people just need to be heard, and we have all a lot of the same symptoms no matter what our diagnoses are.

Awesome, well said. Thank you again.

Yes, thank you. Thanks for having me. It's been great to talk to you.

Hi guys, I want to let you know about a book I wrote called Little Bite, Big Trouble, and I'm gonna read a review that recently 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. Disease is contrary to life. Therefore, wherever disease exists, life must also fight to exist.

Good job fighting, Lyme fighters!

Keep it up.

We'll see you next time. LymeVoice contains general information about medical conditions and treatments. The information is not advice and should not be treated as such. Okay, Lincoln? Okay. The medical information on LionVoice is provided as is without any representations, warranties, expressed or implied.

Okay?

Okay. LionVoice makes no representations or warranties in relation to the medical information on this podcast. You must not rely on the information on this podcast as an alternative to medical advice from your doctor or other professional. Healthcare provider. If you have any specific questions about your medical matter, you should consult your doctor or other professional healthcare provider. And for you, you consult your parents, okay? Okay. If you think you may be suffering from any medical condition, you should seek immediate medical attention. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this podcast. Got it, Lincoln?

Got it.