105 Dear Lyme Disease (Transforming your pain into purpose)

We have had quite the love-hate relationship. When you first came into my life, you silently entered like a ninja on a deadly mission to evict me from the life I knew. My life has been a whirlwind of confusion, pain, lessons, and growth since we met. I keep asking, why did you decide to choose my body, my mind, home and my life as your host, Ann and Beth.

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.

Wishing your doctors could communicate and come up with a cohesive plan specific to your medical needs and genetics? At Invita Medical Center, they offer a team-style approach, giving you the opportunity to heal. In addition to a commitment of providing radical love and care for their patients, they are strategically located in sunny Arizona because Arizona offers the best integrative medical laws in the country. Call today to speak with one of their patient care coordinators. You can find them online at invita.com.

Line Voice thanks Invita Medical for the continued support. Please reach them at 1-866-830-4576. Hey, Line Voice listeners, we love bringing these episodes to you every week. If you would like to help us and support us, there's several ways you can do that. Those are all listed at LymeVoice.com. And if you look there, there's ways you can donate even as little as $1. Any would be appreciated to help continue to get the message out, to help fight, heal, and live. Thanks again.

Welcome to another episode of Lyme Voice. I am your host, Sarah Slickdy Sanchez. Today's episode is called Dear Lyme Disease. There is so much depth and knowledge and understanding in this episode. I know I always say that I'm excited to bring you guys these episodes, but it's true. This is another one I'm really excited just because there's so much depth in it. Before we get into that, I want to tell you about 3 resources. These are 3 resources that we have used and continue to use. So TickWarriors.com is the perfect place to get all of your needs met. TickWarriors.com offers safe, effective, all-natural, eco-friendly protection against ticks, mosquitoes, and other insects. They help you protect the people, pets, and property that you love, as well as your livestock. And we live in Colorado, we have deer in our yard all the time, we treat our yard continually with the Tick Warrior all-natural pest control. It's really important to me to know that we are doing our due diligence and protecting everyone in the house. And so tickwarriors.com is a fantastic place to get that protection. If you use the source code LINEVOICE, you will get an additional 10% off your order. Also, LymeTV.org is a fantastic organization. If you're not familiar with it, LymeTV.org is actually working on two specific projects that I want to tell you about. First, they're doing a documentary. They're filming the highlights and advances in Lyme disease research, as well as the science behind Lyme testing, how the disease and other co-infections disseminate, and the dangers of long-term damage to the host body. In addition, the film will feature the hurdles that many Lyme patients face trying to get proper care and an early diagnosis. They're also running a commercial series called "A Tick Bite Can Kill You." This public service announcement shows the dangers of Lyme disease and other tick-borne diseases through 30- and 60-second clips which are currently broadcasting on the internet and are targeted to launch in local markets in 2020. They also do what is called TikTok series, and it— Lime TV's filmed TikTok series consists of informative and dynamic 10-minute segments on various important topics ranging from why a patient may still be sick to how to read test results, which is one of those questions I get on a regular basis. How do I read my labs and figure this out? And thirdly, I wanna tell you guys about a really fantastic nurse, nurse practitioner that I came across recently by the name of Elizabeth Kirk. And she is here in Colorado, but she does telehealth and her and I recorded an episode that has not aired yet. She is a great resource because she overcame Lyme and it's shaped the way she runs her practice. You can look her up at integrativehealthcolorado.com. But one of the things that Elizabeth does for her patients is she passes on the practitioner pricing on supplements directly to her patients. So it's one of, I think, one of the more affordable options. And because of the telehealth laws have changed through COVID, she can treat people in all 50 states. So if you are looking for an affordable pathway, uh, go to integrativehealthcolorado.com. And Elizabeth Kirk, I think, is a fantastic resource. So I hope you guys are having a fantastic Fourth of July. Here's our episode.

If you're listening to the 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: Tick Warriors is offering a 10% off discount to all first-time purchases. Simply add LymeVoice at your checkout and you'll get 10% off. Go to tickwarriors.com today.

Welcome, welcome, welcome to another episode of Lyme Voice. With me today is Wendy Lindenmuth, BS, MPH. She is an energy medicine and alternative healing specialist and an intuitive healing artist with over 25 years of experience in teaching medical and public health and healing. She helps people suffering from Lyme disease chronic illness, and pain to find relief from their symptoms and limitations and start creating a life of hope, strength, and purpose again. She lives in Dresser, Wisconsin with her husband and two dogs surrounded in the tranquility of Wisconsin Interstate Park. Wendy, thank you so much for being here with us today.

Thank you so much for having me. I'm really excited.

So Wendy just launched a book called "Dear Lyme Disease: Transforming Your Pain into Purpose." And that's what we're here to talk about.

Yeah.

So why don't you start, Wendy, by giving us an overview just of your journey, and then we're gonna deep dive into all the questions I have highlighted in this book.

Okay, yeah, great, sounds good. So in 2015, I was diagnosed with chronic Lyme. At first, I didn't know what it was. Went to, you know, just a variety of different doctors, and then finally I was diagnosed. And by that time, I ended up having— because of the stress of the Lyme, it triggered shingles, and I also ended up having meningitis, which just really impacted, you know, just my brain and the way that, you know, I thought. So probably the first whole year of 2015, I just had to be in bed. I couldn't do anything at all and, you know, couldn't work. You know, I had a full-time job working in quality assurance for like medical device. And I was just like super busy. I was a competitive athlete. And then all of a sudden, nothing. I mean, I couldn't even move. Nothing, nothing worked. My brain didn't work. My limbs didn't work. And so just, yeah, that's just kind of where it started. And then just between going to different doctor's appointments, trying different Lyme protocols, and just seeing, you know, what worked and just being patient. And then they had just like during that time, I remember just asking doctors, you know, well, when I, when I go home, you know, what are some things that I can do And no one could really give me any answers. And then so as years went by, because I wrote this 5 years, you know, later, I was thinking, you know, I wish that I had some sort of guidebook that would have helped me. And then so I put together— I wrote this book based on everything that I tried using, alternative healing, and, you know, working with my clients, so what worked. And, you know, so I decided, and it took a year to write, I decided I was gonna write this book. And it was a long year, it was a long journey of going back and forth between not feeling good and, you know, have to put it away for a little bit and then coming back and working on it. But yeah, I'm excited that it was finally published in April and, you know, I get to share it with other people who have Lyme disease.

Well, in this book, fits our niche. Like, you know, we really focus on really a lot of the social and emotional side of things. And that's what I felt like this book did is it just goes deep into the losses you're experiencing on so many levels, or the complexities that you're facing. And it does it in, in a way that says, yep, this is gonna suck.

Yep.

And it's not gonna go fast, probably But, but it's very instructive in just the way it's laid out. And honestly, I think the part that I enjoyed the most was just hearing your thoughts as you're going through these different layers of complexity.

Yeah, thanks. That's kind of how— I'm glad that you said it, because when I sat down to read it, I really imagined like a group of other people who had Lyme disease, and I was sitting in front of them and just talking to them, just having a conversation with them about, you know, this is, this is how I felt, this is what I'm feeling, and sharing that with them. I'm like, well, what do you think about this? You know, have you tried this? So yeah, I'm glad that came across because that was really important to me to feel like my, you know, my audience was right there in front of me to really connect.

Yeah, I think it's honoring the reality of what is and the hardness of it, but then also focusing on what you can control and how to get better.

Right.

Yeah. So I want to start by reading two quotes. Well, I'll read one in your introduction. You said, I just loved it, said, I discovered how strong I was when my body was at its weakest.

Yeah. Yep, it's gonna make me cry. Yeah, that's so true though. I mean, 'cause, you know, I mean, I felt so, I always felt so strong, you know, being a competitive athlete. But then when that was taken away, you know, you just, you feel so incredibly weak, you know, and within that you have to just, I mean, and you're not even taught this 'cause no one, you know, you feel so alone and no one can tell you, you know, you have to just go really deep. You know, it's just, it takes patience and, you know, like you said, giving yourself permission to go deeper and to be okay with it and to figure out, you know, just really what you're made of, how strong and how determined that you are.

Yeah. It's interesting because your journey is very different from mine in the sense that I went downhill so slowly I didn't remember what normal was. I didn't remember what it felt like to live in a strong body. I didn't remember what it felt like not to live in pain. And so for me, like, I, I felt like your journey was summed up because you went from such a— you were competitive cyclist and then all of a sudden you couldn't even finish a race or finish a trail run. And so race. And so you knew, like, okay, something's really wrong, because a light switch has gone off, right? Like, my life has changed. But a lot of people, they go downhill slowly. And for me, like, I got infected for the first time at 18. And that summer was— that summer I started having severe migraines. But I also had air hunger when I tried to be athletic.. And I had played soccer and basketball and ran track and loved sports my whole life. And all of a sudden, going into adulthood, I couldn't breathe. Wow. But you know what I attributed it to is I just thought, well, maybe this is what it's like to be out of shape as an adult. Like, I didn't know. And then, right, yeah, you're going to the doctor for migraines. You know, I started getting 48-hour migraines once a month or whatever that would put me in bed in a dark room.. And same thing, like, I didn't know to ask those questions beyond like, okay, do I take an Excedrin? Or, you know, no one was teaching me anything to do as far as proactively fixing what symptoms we were facing. And you're right, it's just enormous to have to find that amount of strength when you are at your weakest.

Right. Yeah. I mean, even, even just summoning up enough energy, I remember just getting just lifting my head off the pillow and slowly just kind of rolling your body off the bed and your legs give up. And I remember just literally crawling to the bathroom, you know, and having like help to even just sit on the toilet, you know. And you're like, wow. Yeah, you're right, for me it was, it was literally like, like one day, you know, I, I did this almost 100-mile bike ride went to bed, woke up, and everything changed. So it was like I didn't even have time to prepare. I didn't even know like what was going on. I mean, it hit me so hard. So it was just, yeah, like I, I still look back and I'm like, what happened? Like, I, I don't know if it's better to have gone slowly or to have so fast and then wake up in, in a completely different body.

I think the benefit of going slowly, or the benefit of it happening quick, is you know to some extent you're not crazy or you're not lazy. And I know everyone still struggles with that, but that was for me like, oh, have I just become lazy? Like, why does it take so much effort to get up and go use the restroom? Am I being lazy? Like, that's all I kept coming back to is maybe I just don't care much anymore. Like, maybe I'm right. Maybe I'm— they were telling me it was all in my head and that there was nothing wrong. So you tend to believe that on some level after you hear it enough times.

Yeah. I remember feeling too, cuz like I used to be so proud that, I mean, I could really do like a whole week's worth of something like in a day. You know, and then, and now it's just like, you know, I have my list and if it, you know, the thing on my day list, if it takes a week, you know, I'm like, well, you know, just one thing at a time. But like, no one teaches you that either because we're always go, go, go. So every, every single aspect of your life has to be like completely relearned.

Yeah, it really does. So I want to read another quote. It's on page 17 for anyone who's following along in their paper copies of this book, but it says— I love this part— I am not an authority on treating, diagnosing, and/or treating Lyme disease or any other chronic illness or any other chronic disease and illness. I am, however, an authority on living with chronic pain and the symptoms of this disease and my other related diagnoses. When I read that, I was like, oh my gosh, that's so well said. Like, yeah, we do not have medical degrees, but we are authorities on living with this chaos, right?

Well, yeah, and this— that's— I think that part really gave me permission to feel like I, I can write this book, you know. I mean, sure, you know, I have credentials, but like, that gave me permission. Like, I have been living this And everyone else who has Lyme disease or chronic pain, like, like, we're the experts, you know? I mean, we go to the doctors, they can help only so much, but unless that you're living it, yeah, you don't know.

Yeah, you don't. And I wrote down right by your quote, I wrote down a quote by Michael J. Fox that instantly came to mind when I read that. And he says, this message is so simple, yet it gets forgotten: the people living with the condition are the experts.

Wow. Yep, so true. Yeah, it gives me chills. Like, yeah, that just— it does.

It sums it up. I have another one here. We're still in the introduction. Hope endures the hardship with us. Hope presses for victory and gives us courage when we need that inner cheerleader. Hope is our lifeline. So we've talked with other guests extensively about hope, because it is, it's what we all need. And also how sometimes even just having hope when you've already had hope in a physician, hope in a round of antibiotics, hope in a modality that will work, when you have extended hope over and over again, and still been dealing with what you want to call it symptoms, failure, lack, whatever is surfacing. And so sometimes you have to be very brave even to have more hope again.

Yeah, you really, really do. Yeah. And I think it's just normal to, like you said, like to, to go back and forth, you know, with it. I mean, and allow again, allow yourself, you know what, I'm just, I'm going to sit just with myself without any hope today because I need that break. And then to be like, wake up the next day, I'm like, okay, I have to have hope again. This is gonna get me through the next day. But yeah, I mean, I think that's just incredibly important. And yeah, and with me, it was like, it's a rollercoaster of having that hope. And then there's days where you have maybe a little less hope, but hope always, comes back, you know, it always does.

But you have to choose it, right?

You do have to choose it.

Yep.

Yeah, over and over again. What is your favorite part of this book?

I would say my favorite part is my letter to Dear Lyme Disease. Okay.

All right, well, let's start there, cuz I might be able to get through this. I was just going to read the first few paragraphs because it had such a visceral response for me when I read your letter, Dear Lyme. And as I read your words and your thought to one, Lyme disease, but then also like when you wrote the letter to yourself about how you've overcome, how you've managed to get through this, both of those things just brought up an enormous amount of emotion for me. And I was just Overwhelmed and simultaneously trying to write my own letter in my head.

Okay.

Yeah.

And I remember writing it too. It took a long time to write those. Yeah. Through sobbing and, you know, memories and like, holy crap, this is a lot. But yeah, but getting through it was just so empowering and healing.

How many times did you write that? Was that a one and done, like, I'm going to dive in emotionally, or did you rewrite this?

Oh, I rewrote it. I would— so I had it, I had like just a regular, you know, pad of paper. This is how I started. And, um, you know, I would just start writing like I'm actually writing a letter, you know. And, um, and then the first couple sentences, I'd be like, wow, that's, that is, that's a lot. I just, I have to leave for a little bit. And then I would go leave and do something, and then like, okay, I think I'm ready to to continue writing and I'd come back and then I would just finish. And then when I was done, you know, I would read it and I think I probably just rewrote the whole thing, like both of them, probably one more time just to, you know, for the book, just to make sure it was, you know, had clarity and stuff.

Yeah. Okay. I'm going to start reading. I've got a few things and then I'll let you expand on it. Ear Lyme disease. We have had quite the love-hate relationship. When you first came into my life, you silently entered like a ninja on a deadly mission to evict me from the life I knew. My life has been a whirlwind of confusion, pain, lessons, and growth since we met. I keep asking, why did you decide to choose my body, my mind, and my life as your host? And infect them. I had a perfectly good life until you decided to invade my body without my permission and cause havoc from head to toe. I was happy. I had a great career. I had the freedom to do what I wanted when I wanted. I could travel. I could exercise without pain and limitations. I could read without special prism glasses that I now need since you changed my neural pathways and vision. I could listen to music without the noise sounding so excruciating that I had to turn it off and live in silence. I could receive touch without discomfort and pain. I could think clearly and not feel like half my brain was working most of the time. I'd heard about you from other people. I had heard about you from other people you had infected as well, and from reading information about you, but I never thought we would be so intimately connected and that you would overtake my entire life and existence as I knew it. I'm not even sure when you came into my life. It was like you threw me a surprise party out of nowhere and shouted out, I am here, like it or not, and I am not leaving. I try to think back and wonder if our relationship started from a hike or a bike ride on the trails, or was it just from being outside when you found me? Why did it take so long for you to identify yourself when you heard me crying, asking and wondering Why wasn't feeling well? Why did you take away everything from me? My career, my love and passion for outdoor activities, my freedom, my connection with my friends and family, and the use of my body and mind. Because of you, I had to start over from scratch. When I finally awoke from my endless slumber, I felt like an alien in a foreign body. I felt like I was inside my body looking out and observing everything for the first time. I couldn't recall words for things, I had to relearn them. I was embarrassed and didn't want to have a conversation with anyone for a long time in case I didn't know what something was called or what they were talking about. Normal sights like flowers, colors, artwork, street signs, the trees, everything looked and felt different. I associated it like when Dorothy in Wizard of Oz started out black and white and then she goes to Oz and everything is in color. My whole life was new. You also took away my memories. There are so many memories that my friends and family talk about from the past, and I sit and listen as if I'm hearing about someone else's life experience. Even now, when I sit to watch a movie, a TV show, or read a book, I have to ask my husband or kids if we've seen it before so they don't have to watch it a second time. You not only impacted my life, but others around me too. My time and energy are now limited and unreliable each day, so it is difficult to schedule anything and most likely will need to be rescheduled. Instead of events and activities that I looked forward to with my friends and families, my days and weeks are now filled with doctor's appointments. Sometimes a family member or a friend will take time out of their schedule to drive me if I am not feeling well, and that makes me feel guilty as hell. I'm also very angry that you impacted my finances. I'm unable to work a normal 9-to-5 job and get scheduled paychecks. You also cost a lot of money to live with, which I thought was hilarious.

Major lie.

And try to have you evicted from my body. There have been countless traditional Western-type doctor's appointments and emergency room visits where insurance covered the high— covered the cost as long as I met my high deductible. Alternative healthcare provider appointments that were out of pocket, massage therapy, and endless amount of supplements to take due to deficiencies. You also impacted my social life, and I have little or no interest in it now since I would rather be surrounded in silence and have time to sleep and rest when I need to. You took away my future dreams and goals I had planned too. Why would you do that? You also took away my passion for biking and being a competitive athlete. My health and being able to compete was the most important thing in my life. When you first came to live in me, I couldn't even walk or move my body. All my muscles atrophied from you stopping my thyroid to work properly as well, and I still must deal with the consequences. I'm fortunate that I can go for walks and hikes and even short bike rides now and start enjoying my life again. As difficult as this is, I know I need to forgive you in order to heal and move forward. It's taken me a very long time to get to this point in our relationship, but I realize this is the only way. I understand that you didn't sabotage my life on purpose. You were doing what you were programmed to do. As I look back on our relationship, I can see there have been some positive life-changing lessons. My life will never be the same, but I have learned how to balance my life more efficiently. I am kinder and more loving to myself, and I was given the opportunity to do things differently. I forgive you. I send you away with love and gratitude for all the lessons that I have learned from you, and I choose to move forward and create a new story. I practiced reading that and I still didn't get through it.

And you're reading it and I'm like crying all over again.

Oh my gosh. I wanted to just read it for anyone who doesn't have the book in front of them. I wanted to read through the whole thing and then go back and just talk about a few different things because as I read, I felt like every sentence— like, we've had, we've had quite the love-hate relationship. I'm like, check.

Yeah.

When you first came into my life, you silently entered like a ninja on a deadly mission to evict me from the life I knew. Check. And I just felt like there's so much depth in what you have to go through just to understand what you're dealing with. Let alone recover, right? So what did that do for you, writing this letter? How has that impacted your journey?

Oh wow. For me, I would have to say that is the most powerful tool that I created to heal, is the forgiveness. I was— and forgive me if I start crying— I I had so much anger, just so much anger. And, you know, becoming an energy healer and learning how to, um, I guess just come from a more loving space, and like I learned how to work on my energy. And I knew with that anger, with that emotion, I wasn't It was a disservice to me. I wasn't able to heal. My, my own energy and vibration was so low, you know, with hanging on to that, with that anger. And I'm like, I don't want the anger living in me anymore because I'm not helping myself. I'm not helping my family or anyone that's around me. I have to let this go. But, and for me, I love writing letters. I just, and I miss it because no one really does it anymore. And I thought, okay, I'm gonna just write this letter, you know, to Lyme disease, just saying everything that you just said. And as I did that, I could feel like with, seriously, with every word that I wrote, a little part of that energy was just coming out of me. And I'm like, okay, I forgive this, I forgive that. And by the time I was done, like, within the tears just releasing, like, I just felt like that heaviness releasing. I felt like I could finally breathe. And I'm like, you know what? This is how I have to move forward in my healing. I can't hang on to this, you know, these old memories and this anger and this hatred, because it's just going to keep on living inside of me. It's not going to help my immune system. It's not going to help any part of my health. Mentally, emotionally, physically. I wouldn't be stuck. So for me, that was key into releasing everything and, and saying, yeah, well, this is me now, and let's just figure this out. Let's figure out the new Wendy.

When you said I could receive touch without discomfort and pain, I just had like so many flashbacks to my kids being little and like jumping on top of me trying to hold them. Or I've got— I have 5 kids and I got the sickest after a car accident when, um, we had just adopted our 2 youngest from Ethiopia. So we had 2 toddlers who were toddlers who were 2 years old and trying to hold them and like everything hurt all the time. And I just like— it changed who I was. I'm not a super natural hug, huggy person anyways, like not— our family was not big on physical touch. So like, it's not natural for me, but I don't dislike it. And I try to be more affectionate, but like, I programmed myself to not reach out, to, to not touch if it was gonna put force on my arm, or, you know, just— right. And I know everybody listening, and you, like, we have hundreds and thousands of these stories And but yet you sum it up in one sentence. 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.

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And I know everybody listening and you, like, we have hundreds and thousands of these stories and, but yet you sum it up in one sentence.

Yeah. It's, yeah. Yeah, I'm not like a super huggy person either, but, um, but not being able to have that connection or that contact with another human, um, you know, not— and not by choice. It was just, you know, it kind of feel like it now with COVID you know, like you can't hug anybody and it's just like you are craving because that choice was taken away from you, you know, like you just just— yeah, but, um, but also like my skin, my skin literally, you know, just even clothes, just the touch of it, it was just every— it was just so highly overstimulated. It was like the weirdest thing. Yeah, I know.

Yeah.

And I, and I still have that. I go through phases.

So, so you mentioned the anger, letting go of the anger, and It's interesting. We've been— Aaron and I have been in counseling 2 or 3 days a week now for 8 months, coming out of my whole second reinfection. We have a daughter with a lot of mental health issues who's not living with us anymore and trying to process through all of that grief in our relationship with her changing and stuff. But one of the things, and then We've been in 11 years of ongoing treatment and long-term stuff, and it's, you know, changed us. So we're trying to find our new selves too, right? Like, right, this is who we were when we were surviving. Who do we want to be and where do we want to go? But one of the things that came up, um, in one of our recent counseling sessions was the anger, right? And for me, I do a pretty good job of holding it in or like channeling it, especially now that I can exercise. That's a really great thing. But, um, Aaron had said at one point, he said, you are going to have to forgive me for not being able to fix this. Oh wow. And really, we were talking about the financial side of things more than anything because that's what, that's what the topic of conversation was. Whereas for me, I'm like, okay, these are our family needs. We have to increase our income and like get on top of it because we have 3 people in our house with Lyme and this is a forever thing that we're going to be dealing with. And he's like, yes, but we just paid for treatment. Like, we're, you know, like all this stuff. Our perceptions of stability financially are, are very different at this point because of the illness. I mean, just because of the resources that it takes. But it was interesting because that week it came up, I had a coaching call and she said, my husband is amazing, he has been so supportive. And she said, I'm so angry at him. She said, I'm just angry at him. Where'd— I know we all know Lyme rage exists, but do you think the anger comes from the illness or anger comes from the grief, or is it—

oh, Both. I, I think it's both, um, because I feel like my brain feels like it was reprogrammed. Like, there are things that I— that come up, like feelings and just thoughts, and I'm like, wow, like, where is this coming from? I would have never felt or thought that. And I, and I really think between— and maybe from my meningitis also, but I really think that it really just changes something in your brain pathway. And then the anger, yeah, it does change. And then you have the whole financial stress and then you get even more angry. And I can totally relate, you know, with talking about with your husband, 'cause yeah, I mean, yeah, there's like, you know, pre-Lyme marriage and Lyme marriage. And, you know, I always feel, not so much now, but, you know, for a long time, you know, with my husband, I just would always just feel like, And I'd always say, I'm so sorry, I'm so sorry that all of our money, I mean, it wasn't all of our money, but it felt like all of our money is going to me. And we'd hit our healthcare, what am I trying to say?

Deductible.

Deductible, yeah. And my husband's so sweet, he's like, woohoo, you're an early achiever. We already met our deductible and it's only February.

That is not the race I want to win, buddy.

I know. So like, he really has been supportive and he has a good sense of humor to help me through it because otherwise I'd be just like, why, why are you still married to me? You know, I wouldn't be married to me. I mean, this is, this is like insane.

But, um, we had a very specific conversation when I was very sick before I had a diagnosis of Lyme. It was It was in 2012 and my mom was in the room with me and we were literally packing up our house to move into a one-story because both of our, we had a two-story house and I could no longer walk. And I was in a wheelchair most of the time. And I, I had, I just lost my insurance. I had applied for disability and lost my insurance and had spent, not even exaggerating a bit, 100 hours on the phone figuring out what and how it happened. So they don't tell you when you apply for disability that they automatically enroll you in Medicaid.. And I had, I had an insurance that was only a primary. It wouldn't be a secondary. So I ended up losing it and then I did not qualify for Medicaid. So it's a whole thing. Wow. I tell people, don't apply for disability, get a lawyer. They will work for free. Get a lawyer and do it the right way because the cost for us was huge. But he came up and I'm like having seizures on the phone, crying all the time. I'm in excruciating pain. Other people are packing our house, and I'm like, why would you stay? Yeah, why would you stay? And he did something amazing. He was like, you can't get rid of me that easy, which was like the sweetest thing to say. But we've had that conversation now way more so openly of like, hey, how close to divorce are we? Because this sucks. Like, here's where I'm at, here's where Where are you at? Because it doesn't get easier. You are in a relationship. We say like you have your marriage. One of the first practitioners I ever saw who knew Lyme, she said you should get a counselor because your marriage now has a third party in it.

Wow.

Yeah, that's so true. Yeah. Wow. Yeah. Heavy stuff. Man. All right, I'm gonna read another quote here. I'm on page 94. There's simply no time for people or things that may deplete my mental, emotional, physical, and spiritual health, or don't enrich my soul. My life requires simplicity to properly function.

Yep, it sums up my life.

I felt like as I was going through your chapters, I just— you, you were saying the exact same thing in different contexts. You're talking about energy, right? How to control and manage your energy and your emotions. And then you're talking about— oh gosh, where's the other one— pain. How to persist, how to manage, how to overcome or endure. And then you're saying the same thing about gratitude but in a different, a different light, right? And yeah, it's just like this huge tapestry to me. It just— as I was reading your book, it just seems like this huge tapestry of of loss, of grief, of emotion, of understanding, of finding a new purpose, of finding a new identity, honestly.

Yeah, I think you're point on is it is finding a whole new identity. Yeah, and grieving who you were and then going through, you know, It's like these stages of identity, of grieving who you were, grieving who you are when you first get Lyme, you know, and then when you get a little bit better with Lyme, and then, and then I don't know. I mean, for me, I don't know if I'll ever get 100% better, but, you know, this is the 2020 Wendy, you know, and then learning how to live, you know, with me now, you know, and there's days where, you know, like I did way too much yesterday. And I was like, woohoo, you know, like I did so much. And then today I woke up like, oh my gosh, I, I just don't want to do anything. I mean, I was excited to come here, obviously, but you know what I mean? Like, it's just like, you know, when talk to me and you just go through those phases and, you know, and sometimes you just, you know, when you wake up, you know, my husband's like, oh, how are you doing today? I'm like, I don't know yet. It's only been 5 minutes, you know, like Talk to me in an hour and I'll let you know. Um, but yeah, but no, I think living simply has been like the best thing so I can have a little bit more control over my life. I mean, even our house is really simple and it's just, um, it's very minimalistic, you know, just so, you know, it's easy to clean. There's not a lot of stuff everywhere. So my brain can handle it. Yeah, and even like when I wrote my book, like I wanted the words a little bit bigger. I wanted it to be easy to read if someone, you know, had a traumatic brain injury reading it because, well, like my daughter has a traumatic brain injury, you know, and for me it's easier to read if the words are bigger, you know, I can— it's just easier, you know, for my eyes to focus and to move.

Huh. Yeah, you're right. Well, it is really easy to read too. One of your segments, you said, when you are aware of how different things in your life affect you, you create greater dominion over your energy. That gives you the power to choose where most of your energy goes and how you want to experience your day. Mm-hmm. Is that something you understood before getting sick?

No, not at all. Yeah. No, I was, yeah, I was so busy before. I was just the more, the more that I could do in a day, I was, you know, I felt accomplished, you know, it was always based on how much. Yeah. And yeah. And now it's just like, you know what, there's a select few people who I talk to who are in my world, um, because they understand and they don't drain me of my energy. And, but, you know, I mean, I have huge, you know, like, good-sized Facebook groups though. And, you know, you just have to learn how to manage your energy with, you know, interacting with social media and stuff like that too.

And— oh, for sure. Yeah. Yeah. In the mindset chapter, chapter 11, you say, even if you have seen a multitude of healthcare providers and have done every test possible possible and still don't feel well, you need to keep believing and having hope. Likely you have been putting your faith and trust in everything and everyone else but yourself. Your body is designed to heal itself. Your beliefs and thoughts determine which signals your brain sends out to your whole body and then instructs your body to respond in specific ways. Both healers and scientists have understood the power of the mind to help heal for thousands of years.

Yeah, I think for me that was huge too, is, you know, I think when I was working with a coach, I was asked, you know, do you believe you can heal yourself? And do you believe that you're worthy? You know, and no one, no one asked me that before in my whole life. I'm like, what are you, what are you talking about? It was so foreign, you know, and then I had to really think about it and I'm like, well, I think I'm, I think I can, I think I'm worthy, you know, but that was so foreign. And inside, really, I had to like sit with it and like, and really just figure out what is it, what do you mean, right? I mean, I had no idea, you know, and then just, yeah, just sitting with it for a little bit and I'm like, yeah, you know, I guess it does start with me. 'Cause with anything, you know, I mean, if you're gonna love someone, someone's gonna love you, you have to love yourself first. And so yeah, you gotta believe that, you know, you're gonna be okay.

You know, the first time I heard anything about worthiness in connection to healing or like stopping pain was when I read The Pain Chronicles by Melanie Thurnstrom. And she was a journalist and sat through hundreds of appointments with pain, pain patients at pain clinics, listening to their interviews. And she just talks about how she could tell by after so many sessions, like, this person is going to walk away and not come back, they're going to give up on fighting their pain, this person, you know. And I was so confused, same as you were saying, I'm like, wait a minute, what does worthiness have to do with healing or stopping pain. Like, if you're hurting, you go to the doctor and they help you. But like, not understanding the medical shaming that happens, not understanding feeling like maybe you have guilt, or you grew up in an environment that said if you are sick, you're lazy, or— and so if you continue to be sick, it must be about you. And then she dives deeper into it, and I have been studying it now for years, but there's religious oppression that comes to play. For me, that was actually a big part of my journey, is I had to eliminate a lot of religion so that I could fight for myself in ways that I, I didn't know I had to do, and I wouldn't have given myself permission.

Wow, that's, that's interesting you said that. Yeah, and I didn't really touch upon that in my book with religion.

But yeah, I mean, I growing up Catholic, it was going to say Catholic guilt, but I didn't want to.

Yeah, no, I totally get it. So in my family, raised super Catholic and my dad is a doctor. So those two things, you know, growing up and it's in your DNA and yeah, I totally, totally get it.

Well, and I feel like for me it was just a process of realizing that through a lot of religion some of it is beneficial and some of it helps to create values and stuff, but some of it is very shame and guilt ridden. If— and it's— but you don't even know that if that's the context you've grown up in. Like, oh, if you're a good person, you do this. And then by eliminating 98% of the population who doesn't do that, and that stuff all creates worthiness issues when it comes to having to fight for yourself, having to spend money that you don't want to spend, or selling off assets. Like, that stuff comes up big because you're like, oh, oh, wait a minute, this is about worthiness. And who am I? Like, in my upbringing, I grew up in an evangelical church, and so it was like, oh, I'm a child of God, I'm, I'm blessed, I'm protected, I'm free. That's what I was told my whole life. You're free, you're blessed, you're protected. Because you're a child of God. And I was not free on a lot of levels. I was free if I did what good people do, which is completely arbitrary depending on who you're talking to, right? But even for my husband, like, he's had to go through his own journey of worthiness and permission because of the duration of my illness and because of how it's impacted all those aspects of life. So you mentioned permission. How big is permission in this journey? Because you— I think you say it in almost every chapter, you talk about— I do— level of permission. Yeah, I loved it. I was like, you go, girl.

Yeah, I think that, um, you know, with the— with the believing in yourself and giving yourself permission to just be kind to yourself, give yourself a break. It's hard enough that you have to wake up with this disease and this pain. It's okay, it's okay if you're still in your pajamas and it's 12 o'clock and you're just waking up, it's okay. And I just really wanted, I wish someone was there to tell me all of this was okay. As I wrote my book, you know, that's what— in the readers, I want them to know it's okay. You have permission in every area of your life to feel the way that you do. There's nothing wrong with you, you know. So I really hope that comes across because I don't want people to just keep questioning for so long, you know, like how I did. And You know, you don't need to, you know, it's— you— there's support systems out there. And, you know, everyone needs at least one support person, one to-go-to person, you know. And if it's by reading my book and me saying, I'm gonna be there for you, I will, I will do it, because I know how important that is.

Yeah, I like that. I liked how in each of your chapters, when you went over a concept, you had exercises to support that. Like, I know there are people listening who are saying, I don't have a support system. And yet you lay it out and you have exercises to help find a support system, even if it's not a face-to-face person. Maybe it's an online friend, an author you can borrow courage from. Right.

And then just different resources to think outside the box of, you know, where can I find this support? Where can I find this you know, permission. But yeah, I think it's, you know, I allowed time for you to, you know, as a reader, to grow with these different activities, exercises, you know. And, you know, I think there's like 14 weeks of things that you can do. And if you get too tired, take a break and go back to it, or skip something that's calling to you first. You know, to do.

And but yeah, I think one of the beautiful things that you did is you really do give permission to people at every level to say, what can you change? There's something you can probably change, even if it's just a mindset or a daily habit. But you're giving them permission to flounder in the insanity of what's happening to them.

That's a good way to put it. Yeah, yeah, it's okay to, yeah, have no clue, bump in the walls, you know, like, yeah, you know, run into something and be like, where am I going? You know, just, you'll find your way. Until then, it's just, just hang in there.

You know, don't give up.

I know, please don't give up.

So one of the interesting things that I was totally new to is, um, you're talking about things that bring you joy, like choosing to watch inspirational videos, surrounding yourself with positive and like-minded people, laughing and playing more, connecting with Mother Earth, like things that we all kind of figure out, right? That's why we moved to Colorado, is it's so healing and beautiful to be here and and I wouldn't have given myself permission to move to a more expensive area, but it's just been so healing. But one of the things you were saying is you were talking about the energy levels that exist within essential oils. So you said essential oils start at 52 Hz and go as high as 320 Hz, which is the frequency of rose oil. I had no idea that oils had frequency levels. Like, I mean, as soon as I heard it, I was like, oh yeah, that makes sense. How did you find out about that? And like the actual numbers? Yeah.

So, yeah, it's really cool. So I have friends that sell essential oils, so I learned a lot from them. And being an energy healer and then, you know, people would ask, you know, do you work with essential oils? Do you work with crystals? Do you work with color? And some of them I did, some of I didn't. So I ended up doing a lot of research and finding the people who, you know, did work with that so I could learn more. But yeah, it's so interesting. So essential oils have a certain, like, hertz, you know, frequency, and crystals do, and sound does, and colors do. And it's— yeah, it's incredible. And it's all— I like it because, yeah, there's this energy healing aspect to it. But it's scientifically proven, which I also like because I like— I like the— I grew up, you know, I have like a, you know, so I have a master's in public health, but I grew up in a physician family. So I like that combination of, yeah, this sounds like woo, but there's actual evidence that supports it, you know.

So yeah, it's really cool. Yeah. And then I also really enjoyed the part where you're talking about color. And this is color therapy, which I had not actually ever heard that term either. But it's funny because I love color. I love flowers, I love colors, and I don't have one favorite color. I have like 4: pink, purple, turquoise, and like everything I own, right? You can see it here is— yeah, colors, because it's like better. And it's funny because I have told my husband for years these colors make me happy. Looking at my pink water bottle is— makes me happier than looking at a black water bottle. Like, I don't know why, but it does. And when I was reading your whole thing on color therapy and like how you broke down what each color like represents or what it brings, I was like, oh my gosh, I knew there was a reason I liked color.

Yeah, it's really, really cool. I get so excited talking about color because I'm an intuitive healing artist. And, um, I don't know if you can see the painting behind me. It's kind of— okay, but I created that. So, um, yeah, so the color, I use that a lot of— it's specific color. So color is really cool too because each has its own vibration and frequency. And when you look at it, it actually stimulates your pituitary gland and pineal gland in different ways depending on what the color is. And then so, you know, when you look at the yellow, You know, you're— it stimulates it and your brain's like, oh, it's yellow, I'm gonna make you feel like this, you know, or whatever color. And it— and again, scientifically proven.

It's so cool. Yeah, yeah, I thought that was just really neat. And even how, like you said, indigo is a great purifier of the bloodstream and also benefits mental problems. It's a freeing and purifying agent. It is also an astringent. That totally blew my mind.

Yeah, it's crazy. Yeah, and I wanted, you know, obviously to share that in there because a lot of people do not know, you know, about this. And it's simple, simple things like you said, like, you know, why am I attracted to this water bottle? Why do I love this color flowers? You know, why did I paint my house the color I did? Right. You know, because you, you have to listen to your body. Like, your body really does know what it needs.

Oh, it's really cool. That is something that I have learned. I'm like, so I told you off air that I'm in the process of writing a memoir, and I already had probably like 60% of it done back years ago when I went through my first round of treatment. And then after I got reinfected, I scrapped it. I started over. It's a totally different book because I'm a totally different person. My viewpoints my daily habits, um, my limiting beliefs. Like, we've been digging into those in the recovery mode for so many years now that I'm like, that book that I wrote 7 years ago, it's not applicable to where I'm at anymore. But right, you said, um, you said at the end of your book, you said, I know after facing the reality of my own limitations, a certain freedom followed. Mm-hmm. And my husband and I have talked about that endlessly, that like through all these losses and grieving and hardship, we now take back more freedom. We've given ourselves permission to trust our bodies, to believe that if something is working for us, even if it doesn't make sense, like that That's okay, right? It's working. Yeah, you know, coffee enemas have been a huge thing for me. Like, I would have never thought that, right? Right. But it works and it stops the air hunger and it gives me stamina and it does all these things. And so in— as I'm writing my memoir, I'm saying so many things of this, like you're saying, oh, here you have permission to be lost in this and be struggling in it, but here's also like 16 things you should keep doing in the process. And I'm like, We're— it's contradictory almost, but it's not because it's like instructions on these tiny levels to come out of so much grief.

Yeah, and that's an excellent way to put it too.

Yeah. Hmm. So at the very end, chapter 15, where you're talking about setting goals for yourself. So you guys order this book and there's a fantastic checklist for like setting goals for who you are physically, mentally, emotionally. Like, I love that whole chapter that you laid out. That's really good with SMART goals. But, um, at the beginning of this chapter, you said, when I got Lyme disease, all of my future goals were no longer realistic. I had to put on hold— I had to put a hold on creating any new ones for a while. As my health started to improve, I began to feel more inspired and motivated to think of future possibilities. And we had this, this hard moment for me at my in-law's house. We had all written down 10-year goals. This was way before I was sick. We'd all written down 10-year goals of what professionally, family-wise, with my— we did it like on Thanksgiving. And so here 10 years has come and gone, probably 7 of which I've been completely dysfunctional, MIA, in and out of bed, not working. And I had not hit one of my 10 goals. Wow. And I knew, like, when they were talking about bringing the box out and I was like, I don't wanna do this. I don't wanna be here. Like, because my life, our lives had entirely changed. We had 12 years left on our mortgage on our house. And when we actually opened the box to read it, so my, one of my goals was to have our house paid off. Not only did we not own that house anymore, we didn't even own the house we were currently living in. Like we were, we had sold all of our assets over the years. And I remember just standing in their hallway holding that crumpled piece of paper, just feeling like, oh my gosh, how can this be that I have not hit one of my 10-year goals? Wow. And yet that's what it was. And I had to give myself permission to not feel like a gigantic failure, to trust that I'd done the best I could and that, that it was what it was. Right. So how did you start reconciling new goals?

Yeah, I guess it's a good question. Really, probably about 2 years ago, I reached out to a coach and she really started helping me to realize I just— I had a lot more. I had a different story to tell. I mean, sure, I had my Lyme story, but it wasn't— I wasn't just a Lyme story. Yeah. And, and I had a lot more that I could, you know, share. But with my Lyme story, I could do so much with it.. And yeah, and then just with my healing aspect, my art aspect, and I just looked at what I still had and, and really just focus on that. And then just like, yeah, I guess just focused on that and how can, how can I use what I already have, you know, going forward.

You did it well. That makes sense.

Yeah.

Yeah. I want to close as we go into our conclusion. I want to close by reading your letter that you wrote to yourself. To myself. Okay. And I might need a moment to find it, but do you want to read it?

Okay, I'll read it. Okay. Okay. I start crying again. All right, so here is my letter to myself. Dearest Wendy, I want you to know how brave you are. I know things have not been that easy for you the past 5 years. Your whole life was turned upside down and you have had to try to put, put it right side up again for a long time now. I know this has been a long road for you with so many different challenges being thrown your way without any warning, but I need you to know how much I admire your strength and your courage. You're so much stronger than you thought you were. You have become my own personal hero. I know that you have felt lost many times. And I have tried to make sense of everything that has happened. I know you don't have all the answers and maybe never will, but you have learned to continue to move forward by learning as much as you can and never giving up. I realize that the path you are on now isn't what you had planned for your future, but somehow you have been able to relearn and prioritize what is most important in your life and focus on that. I am so proud of you for always looking at the positive side of things when it is so easy to focus on what you can no longer do or be.

This always gets me. I know.

Okay, you have had to change so much about your life that it no longer reflects who you once were, but that is okay. You have transformed into someone new and beautiful. You have learned it is okay to do things at your own pace and to slow things down. You have learned it is okay to set healthy boundaries for yourself and stick to them. Your ability to continue to show up every day and learn and grow amazes me. Through your eyes, I have been able to view beauty where I could have been— could have seen nothing but ugliness and darkness. I admire your courage to cry when you need to, to rest when you're tired, and to say no when you don't have the strength. Thank you for never forgetting how significant you are, that you are so incredibly worthy, smart, strong, and enough. Thank you for being relentless in finding new tools and resources to help yourself and to help others. You are my hero and I love you.

Love me. When I read that, I mean, I cried through the whole thing. I was like, you know what, right? Because we give so much grace to other people, right? In coaching calls, in healing sessions, whatever it is, it's like, hey, you're doing it, keep going. And for myself, I, especially as like a visionary and a Type A personality, I can easily focus on the loss, what I can't do, what I still have left to do. And my big takeaway from reading your letter was I thought if I re-read, if I wrote a letter to myself like I would write for any one of my clients and I read that every day, it would change internally something in me to remind myself. Like when you thank yourself for being relentless, I was just like, oh my God, like I've, I've done that too, but I don't give myself that internal credit on an ongoing basis. I, I can loop back around after I spiral downhill. Right. But I just thought that that was so powerful and I have not done this I have not written a letter to Lyme, and I have not written a letter to myself because I can't yet.

But it's—

but it's coming, right? It's coming. Because I think it's both those things I think are really important, and you tap into some really powerful messages.

Thank you. Right? Yeah. Wow. Yeah. Again, just even rereading it, it just— it just does something all over again, and you're like, wow, okay, thank you.

Yeah, I mean, you hear in every sentence so much pain or hope or strength or loss, you know, one sentence is encompassing years and months of your life. Right. Yeah. So Wendy, what did you want to come from this book?

What do you hope will come from this? For me, most importantly, I want this to be, um, a support guide for other people going through this because this is something that I wish that I had, and I think that it would really have helped.

So, well, I think you accomplished it. I think that really does sum up— it really is a support guide and a pathway through, through the chaos. Great, thank you. So Wendy, how do people get in touch with you?

You can look at my website. It is healingforwardwithwendy.com.

That's probably the best way. Okay, healingforwardwithwendy.com. And if you have not ordered your book yet, Dear Lyme Disease: Transforming Your Pain into Purpose, purpose, it will be well worth your while and a valuable part of your journey. Wendy, thank you so much for being here with us today.

Thank you so much too.

I really appreciate it. Yeah. 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 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. Kay, Lincoln? Kay. 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 health 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, 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.