132 Doing Hard Things with Suzanne Cross Burden - Recast

But when we begin to hear from and come alongside other Lyme patients, the layers of complexity and the amount of decisions are so overwhelming that it literally can take that much time to just know the next 5 things you're supposed to do in order to keep going.

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

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Hello friends, I'm so, so glad you're tuning into this episode. This is actually a recording from a Facebook Live event that I did earlier in the year with Suzanne Cross Burden and And for those of you who don't know Suzanne, I brought Suzanne on as a co-host of Lyme Voice. You're going to hear why just in this one episode. She is just a phenomenal human being who I love to interact with. I love to learn from. She's just a wealth of information and insights and has just dove in to heal herself in those ways that are necessary to do. So this is from a Facebook Live, and Suzanne has not gotten to do a lot of episodes because she has had a very, very hard year. Pneumonia and COVID are currently a big part of her reality. And so she is fighting through a lot. One of the things— I was there for this interview, obviously, but then as we were preparing to launch it, I actually listened through it twice, and I'm going to listen to it again because I needed to hear this stuff. It's just so good. There's so much truth. And one of the things that I'm really proud of about Lime Boys, we're tackling hard topics, you guys. Like, none of Lyme is fun or sexy or like— it sucks. All this stuff sucks super bad. And so when you come across people who can pull out the silver lining, who can pull out the lessons learned, who do not let the illness become their identity, even though it's consuming and controlling them, but persevere and then not just persevere, but like dive in and do the emotional work to recover. So powerful. I think it's just one of the most phenomenal, awesome things to watch. And you guys get to hear those journeys of growth and understanding expand on air. And so I'm really proud of that, that we get to bring this to you guys. Suzanne talks about being able to accept the invitation and illness. There is so, so much loss. That is true. Within those losses, there can be invitations to manifest a different life, to create new daily habits, to let go of limiting beliefs that no longer serve you or relationships that don't benefit your life. So she's a wealth of information. I'm so, so glad to bring you guys this interview. So this is my birthday week. I will be turning 43 years old on December 23rd, and hopefully if all goes as planned, we will be in New Mexico with my family. But this has been COVID year, very little has gone according to plan, and plans have continually changed. So we have plans to be in New Mexico, but those plans have already changed a variety of times. So I have no idea where we're actually going to be over Christmas.

Thank you for being here with me on my birthday week.

Thank you for tuning in to Lion Voice. You guys, I know this is hard stuff, and yet I also know that the information you're getting through this podcast is saving and restoring lives. So I'm so happy to be with you on this accidental journey, and I really do believe that there is hope and healing out there. Before we go to our episode, I want to tell you about some of our sponsors, which I am very excited to have. So TickWarriors.com offers safe, effective, all-natural, eco-friendly protection against ticks, mosquitoes, and other insects. We help you protect the people, pets, and property that you love, as well as your livestock. They are even considered safe for bees. Our products are effective and lethal against ticks, mosquitoes, chiggers, and other pests. We interviewed the founder, Dr. Jennifer Platt, in episode 92. If you want to go back and find out details, when you go to their website, please use the source code LymeVoice for a 10% savings. And I'm really excited to talk to you guys about this next year. We've been doing 2 episodes a month for 3 years now. I have some new sponsors coming in 2021, so we will be doing 4 episodes So I'm super excited about that. Something I have been working towards for a while now. So another one of our sponsors is Urbane Medical, which is now in Scottsdale, Arizona, and they have been treating patients with ketamine for 5 years now. Jonathan Evertson and the staff of Urbane Medical are dedicated to serving the Lyme community and have seen some of the most amazing stories of healing and some miraculous improvements from IV ketamine therapy. I talked with Jonathan in episode 109 about the benefits, and I highly recommend considering this as part of your journey. I have seen it in the last 2 years provide an overall sense of well-being, help to treat severe depression, help to reduce pain associated with chronic pain syndromes, reduce OCD tendencies, reduce, reduce vertigo, also restore balance and strength to your whole being. So I highly recommend it if you're in Scottsdale, Arizona. Urbane Medical is a phenomenal therapeutic boutique experience that I highly recommend. Our other sponsor is Medical Bill Gurus. With empathy at the forefront of our daily mission, Medical Bill Gurus is dedicated to being in the trenches with patients and raise awareness for the daily challenges facing them. From medical billing errors to raising awareness for their diagnosis, Medical Bill Gurus takes pride in speaking with patients every day and helping them find guidance on how to navigate our broken healthcare system. It is that, no doubt. This company is a wealth of information about all aspects of billing and coverage available at Lyme and cancer clinics around the world. Seriously, I think he's been to every clinic. He's a wealth of information. I interviewed Daniel, who is the founder, in episode 111. If you have paid for treatments out of pocket that your insurance company did not cover, and I guarantee you, you have if you're listening to this podcast, you may be able to get money back. It does not cost you anything unless they—

you pay a fee if they get money back.

So it's a win-win. I personally know a handful of Lyme and coaching patients who have gotten money back, and sometimes in the double digits. So it's definitely worth a phone call. Call Medical Bill Gurus today and tell them Lyme Boyz sent you.

Thank you again for being here.

Thank you for being here and tuning in. I want to wish you all Merry, Merry Christmas. I know that the holidays are complicated times for Lyme patients because they're already trying to keep up, and the holidays just add, add a lot. And that's apart from COVID So whatever you are going through I want to wish you a Merry Christmas from my heart to yours. Merry Christmas.

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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Hi.

Ah, nice to be here with you.

Yeah, I know. Thank you for agreeing to allow our call to be recorded and broadcast.

Absolutely. I wanted to show off my fingernail polish. Can I do that for just a second?

Yeah, go for it.

There's a reason that I'm doing that. I haven't painted my nails in over 3 years because I've been so ill. And I got some non-toxic nail polish and painted them yesterday.

Yay!

For the first time over 3 years, which feels like a small victory somehow.

It is a small victory when you have like the time and energy to think about something beyond survival.

That's a victory.

That's right. That's right. We have to do that. So it's pretty exciting.

Well, let me introduce you to our listeners. So Suzanne and I became friends through first the podcast and then some coaching calls, and she— and then I also asked her to come and be a part of Lime Voice on an ongoing basis, but her health has continued to go up and down. So many people in the Lyme community and chronic illness community understand what it's like to be moving forward in one direction and then end up spiraling downwards at different times. And it just seems like there's this ebb and flow. And you haven't been able to be on LymeVoice because you've been taking care of yourself, which is the thing you should be doing. But Every time I talk to Suzanne, we have just both gone through so many hard layers of decision-making for so long. And what the world is experiencing with COVID-19, the financial chaos, the unknowns, the living in either fear or panic or living with something else controlling a lot of your time, it changes your reality on on a daily basis. And so when you have chronic illness and you can't control your symptoms, you do have to make really, really hard decisions over and over again. And it's decisions that in most of my 2-hour coaching calls that I do with people, it's how do I do everything that needs to get done? How do I provide financially and meet those physical needs? How do I meet physical needs that have, that are sometimes multiple trips a month to a specialist or multiple trips a month to the ER or whatever it is? And so that process is just so unique to people who have been in it for a long time. And Suzanne, you guys have been in it for a long time.

Yeah. Yeah. It's, it's been over 3 years. It was 3 years ago in April that I got the diagnosis, but of course I was sick long before that. And just very gradually declining. So we have been hitting it hard for 3 years and I anticipated, of course, being farther ahead than I am, but I am way farther ahead than where I began. So, we are in the messy middle along with a lot of other people, but we are finding strength and resilience. I understand why your coaching calls are 2 hours long. People think probably that that sounds excessive, but when we begin to hear from and come alongside other Lyme patients, the layers of complexity and the amount of decisions are so overwhelming that it literally can take that much time to just know the next 5 things you're supposed to do in order to keep going. So yeah, there's a complexity to it. And one of the things helping us through is we are alongside a lot of other patients that are not dealing with the same exact issues, but the same levels of complexity. So we know we're not alone in this crazy Lyme world that we're in. And we just keep going somehow, even when it looks like we're not going to be able to anymore.

Yeah. So let's talk about that. If you guys are interested in coaching, both Suzanne and I do coaching. Suzanne does a lot of coaching with her support group. And I do most of mine online. So if you guys are interested, you can email Suzanne at SuzanneBurden@gmail.com, and I am SanchezSmile@gmail.com. And, or you can reach me through Facebook. But it is, it's so complex because the realities is, like, I've said it so many times on the podcast already, COVID-19 has only been around for a few months and it's shut us down medically and economically. And there's a ton of similarities between how the world is dealing with COVID-19 and how you live as a patient with a chronic illness.

Yeah, because there's so much uncertainty. And so as this was beginning to start, I kind of had these feelings, a little bit of anger, like, uh, welcome to my world, friends. Um, you're complaining that you've been home and isolated for a week. It's been 3 years for me. So, but then I remembered those beginning feelings when, you know, as we were all getting sick and as we were realizing layers and how serious what we had was. And so then I was able to be more empathetic and understanding toward people that are, you know, just trying to figure it out. And the Lyme patients in our group and in general that have been at this for a while have some ninja-level skills. That can really help other people through this COVID thing. And that is something that I keep trying to stress in phone calls, on our group Zoom calls, in interactions with some of them. It's like, remember what you've learned and use all of it right now. It will not only get you through, but it's actually helping other people around you.

Well, and the learning curve is just so steep. It's so steep. I mean, I can't even Sometimes in the Facebook groups, there is this sweet girl who had just gotten diagnosed with Lyme, like an acute case. So she hadn't been sick for years and years like some of us, but right away went into the hospital with all these weird symptoms, in agony. They started her on doxycycline right away on an IV drip, which I was like, wow, that's incredible that she got that level of care from an ER. And she's at home and she's 5 days into it and she's like, what is happening? Like, when is this gonna go away? I feel like death. I can't take care of my kids. There's no way I'm going to work. Like, and to, I mean, when she was basically, she's a weekend and I'm like, oh my gosh, I don't even know how to tell someone like that for those of us who are years in.

Yeah, it's like you, you're like, you ask yourself, what information does this person need in these moments? 'Cause if I give them everything, they're gonna crumble. It's too much. And so what is the next right thing to do? And for many of us that are in the middle of it or wherever we're at in it, we have to learn to live in the day and the week so much as far as the decisions that need to be made next. My therapist says that's how everyone should live. They should be living in the moment, in the day. But with Lyme patients, you are actually forced to do it. So Sarah, you and I have lived with the level of uncertainty for so long that COVID, it seems like a ripple in the water in some respects. Oh, totally. To us, like I'm not afraid of getting COVID-19 at all. I have all the tools that I need to protect myself because I've learned enough about viruses and bacteria and I have things within my home that can keep my immune system strong, or I can treat myself with those things. But not everybody has that, right?

Yeah.

So we have developed this massive knowledge, and it's like, okay, how do we carry it into this new season, which is going to go on for quite some time? And how do we also make people, um, more aware of what Lyme disease is? This is the awareness month. For the year. And my goodness, the globe is turned upside down by COVID-19. But when will the globe be turned upside down by Lyme disease and other tick-borne illnesses that are decimating the lives of so many people? Maybe this is an opening, and maybe it's a window. And that's why we have to keep talking about it. If it was just about you or me, we probably would be like, no, I don't really feel like talking about it. But because we realize it's about so many people and their health and well-being and welfare, it's like we have to talk about it, right?

Yeah, you do. You know, I got a text message just this week from a past coaching client and she said, coming out of massive treatment, and she said, "Hey, I'm, I'm doing all the protocols. How long did you do all these at-home protocols? Like, when is this gonna end?" And she's a few months out of treatment. And I said, you know, it was a solid 2 years of 6 days a week implementing as much as I could, whether that was sitting in an infrared sauna. For me, juicing and colonics have been huge. Swallowing supplements 4 or 5 times a day and taking some supplements with food and some supplements that can't be with food and juggling all of that. And, you know, I'm— that's just what it took.

Definitely. And that is what it takes for most people that reach that level of illness. And I think what people are beginning to realize, we see some articles coming out in Forbes magazine and some other places, is that this is not a minor thing. It's not like a very small percentage of people that get acute Lyme end up with with chronic Lyme disease symptoms. The percentage seems to be a lot larger than anyone ever thought that it was. Even the CDC numbers that they do admit to are large enough to decimate families and lives around the world. So, yeah, like, we have to bring awareness to it. And for those of us that are still here, we're still living because we took it that seriously to do all the treatments, whatever it took financially, relationally. I have a huge paper that I typed up of what I have to do throughout the day to space things out like you were talking about with current treatments and supplements. And it's a pain. It's like you got to have your phone set to some of the stuff just to keep up with it. But it's worth it to save our lives. And if someone were to ask me when will the treatment end, I would probably say in a way it never ends. Because once you get into the Lyme journey and you begin to heal, and it's a detox body, mind, and spirit, I'm telling you, it's a good journey in the sense that you're going to clean it all out if you're devoted to it. You're going to want to stay healthy afterwards. So you start learning all this stuff about your body, your mind, and your spirit, and then you're like, well, it's not going to be as intense as it was when I was actively treating, but I'm going to continue coffee enemas. Just, you know, maybe once or twice a month or once or twice a week. I'm going to continue this amount of juicing. I'm going to continue to eat clean. I'm going to exercise. I'm going to practice good boundaries. Because why would you give that up? You know, you've made such an investment in yourself.

Yeah.

And you be—

you become such a vibrant person and a vibrant tool to inspire other people that they can actually live differently than they're living right now. Even if they don't have chronic Lyme, they don't have to have a serious chronic illness to see that making changes in the way the average person lives their life is beneficial and life-giving and joy-filled. And so, for me, I actually see it as an invitation. I think there's an invitation in everything we experience in life. In COVID-19, there's an invitation for the world community and for the individual. And in Lyme disease, there's an invitation as well.

I agree. And that's— yeah, I agree. There is an invitation at every level and with every turn if we're looking for it and if we're willing to accept it and deal with it. I think one of the things that took me— there's so many people out there with chronic illnesses who maybe even didn't have a real diagnosis. There's so many labels, and those labels may be helpful in applying for disability or something, but not necessarily like, oh, I think for me, I didn't realize I was fighting for my life for a long time. Like, I had chronic fatigue, I had fibromyalgia, I got every cold that came around. I did not realize early on in those years that I was fighting for my life because I wasn't. I was existing. And I didn't know what I didn't know, but—

Yeah, yeah, we almost have to have people point it out to us. I think I had people telling me that were close to me that were not, that did not have a healthy emotional outlook or life that I wasn't dying. No, I was just I was just sick, but I was going to get over it. And in fact, I was dying. And so a year or two later, after I was kind of out of that woods, several people said, we knew that you were going downhill. One practitioner said, I went home that night and told my husband, I've met a— and I'm not sure she's going to make it. She's just too weak at this point. And so the reality of it hits you later and you're like, oh my gosh, no wonder it felt like I was in the middle of a bog trying to run through thick mud. You know, like, yeah, it takes every bit of tenacity and you have to have at least one person that sees what's going on and will fight on your behalf. I believe that. So you just have to.

Let's talk about that, um, because some people don't have that, uh, and some people have to become that for themselves.

Yes, right.

Um, but you just celebrated an anniversary.

Yeah, yeah, our wedding anniversary on Sunday. 12 years. 12 years.

Yeah. And you shared on Facebook look, um, how David had said in his card to you that he said, we've laughed together. What was his quote? We've laughed, we've loved.

He said, I think he said, we, we, we laughed, we loved, we cried, but mostly we endured.

Um, so emotional when I read that.

It's just like, that was the last line of the card. I remember last year, you know, when there's an anniversary or a birthday or Christmas, getting cards from him, and he tried to come up with something to write. And I remember at one point thinking, I can't wait till the day that he doesn't mention something about how we made it through something so hard and we're only going to come out of it stronger. Because sometimes you feel like it's never going to end. And so I think it's been hard for me to believe that there are people like David in the world that are able to stick in there for the long haul of something that's so hard to fight. But that's what he's done, and it hasn't been perfect for the two of us, but we've really, um, we've circled in, and he has grown tremendously through it, emotionally, physically, mentally, spiritually, and I have grown tremendously through it. And there's something that can happen when you come through something this intense together, whether it be your spouse or a friend. I heard— I was listening to a podcast today in which a Lyme patient, an adult Lyme patient, said it was his mother. Family members don't always understand, but sometimes they do. Who knows where your person is going to come from? I think some people are finding other Lyme patients. Yeah, through Facebook or on WANA, like the WANA app, the chronic illness app, and they find somebody that they can team up with that kind of gets it. And they have to be a person who is willing to both validate where you're at, because you have to stay in your reality. And that's the one thing that's really important, because a lot of times Lyme patients are told it's all in their head, and that's not helpful to get you through what you're going through. But then you also have to have someone like you, Sarah. You sent me a text a few weeks ago when we were trying to keep me out of the hospital, and you said, there is a way through this. And that was really helpful too. I think those two messages are really vital at every stage of the Lyme journey. If you have a friend or a loved one who can say all day long to you, I'm so sorry, I feel your pain, I hate that you have Lyme, that, that's great. And that is what you need sometimes, but that will only get you so far. You have to have someone with a warrior-like spirit as well who can step in and say, there's going to be a way made. Now, we don't know how that way will be made. In the last 2 or 3 weeks, David and I had no idea how we were gonna keep me out of the hospital, how we were going to get an ultrasound I needed. It took 4 phone calls and David calling instead of me calling to get in to get an ultrasound. That we finally got.

Yeah.

And we did keep me out of the hospital, but you've got to be super persistent and you've got to believe that if you keep trying, something will open up. And the truth is you have to have imagination because you have to understand that sometimes you think you're at the end of one road, but there could be something even better on the other side of the door that you're standing in front of that has been slammed in your face. And that has happened to me multiple times. It just happened again because I'm getting immunotherapy for Lyme disease. My doctor suddenly retired. He's in another state. Very hard to find the immunotherapy you need. Um, we didn't— David started calling places in the states by us none of them could accommodate me. But while he was on the phone, he talked to someone who said, well, I think you could order that through the mail through this place in this other state, and since you already know your dosage, they could send it directly to you at a cheaper price. And that turned out to be true. Hmm. Wow. What are the chances? And it's actually better for me to do it this way than the way I was doing it. But if we didn't stay open to the possibility, we would never would have made the phone calls. I could have gotten into a situation where I was in so much pain I was bedridden again.

And so you—

yeah, you have to believe that there's actually something out there for you.

Yeah. And, you know, we've been— Suzanne and I have been talking about this book by Ryan Holiday called The Obstacle Is the Way. And I've read it. It's been a huge tool for me in the last few months because it comes at life from a very logical approach in the sense of deal with whatever is blocking you. And as you do that— and it's so frustrating. We've been dealing with Lyme nonstop for a decade and we're not— We're not done. And I want to be done. And last fall, after I'd gone through treatment for the second time out at Invita Medical, I came home. Physically, I'm doing really well. I'm stronger than I've ever been physically. And I'm finally at this place where I'm like, oh, I am really capable of living my— this life that I've been working towards for a really long time, growing the business, and my son's health tanks. My 15-year-old who has Lyme. So Lyme disease is not sexually transmitted, but it is transmitted from parent to child. So my son Nate, who is now 15, he's been very healthy since about 3rd grade. He's a freshman now, and he just spent the entire school year being home sick following an oral surgery that had complications. And his health has tanked. My husband's health has tanked. And we've had to make really hard decisions even within our own family about, okay, the next level of care and treatment because it's thousands of dollars. Every step you take is thousands of dollars. And, but the thing that has been encouraging to me about that is I feel like it takes just to honor the reality of what is going on, takes— you have to have a tremendous amount of awareness and strength to say, this is a huge obstacle that we have to get past. And I feel like I just dug myself out of a ton of obstacles or jumped over 100 hurdles, and now I have to do it again for someone else. And I've been— that's been a hard thing for me to accept because I don't want to be a caregiver anymore. I don't want to be sick. I don't want to live in this reality. And yet the only way through once again is to take that obstacle until it is gone.

The only way out is through. And, um, it is like, who could have ever imagined, you know, that either one of us would find ourselves in situations where we're battling for our lives or the life of someone in our home? And we're doing it repeatedly.

Yeah.

And there isn't, there isn't like a sense of let up, you know what I mean? Like, it's not like 3 months go by and you're like, oh, that was pretty easy, 3 months. Like, we were able to kind of coast for a bit, you know? It's just that, that doesn't happen. There's no coasting.

Yeah.

Now there are moments of joy and there are moments of gratitude and hope. And I think we have to, you know, be open to saying, I'm going to grab the moments while I'm in the middle of the fight. And I think we have to allow ourselves all sorts of grace about expressing the emotion, about the loss of having to go through this stuff again, or to even fight it, to cry, to lament, to scream, to go through trauma therapy, EMDR, to draw, You know, a lot of people may not understand that when you have so little physical, emotional energy and mental energy, that the relational things that you, you do interact in and are a part of have to be clean. Like, they have to be positive or hopeful or emotionally healthy because you literally don't have any margin for something else.

Yeah.

You know, and so you have to make choices that people don't always understand it, but I do think the farther along you go, the less you care about what they think.

Yeah, totally. And I'm— Erin's putting up an image here.

Hopefully people can see it. Yeah, okay.

And it says what healing actually— like, what healing— what we think healing is, which is meditating in peace and what healing actually looks like. And it consists of having difficult conversations, taking radical responsibility for your actions, setting and enforcing boundaries, implementing healthy routines, and unpacking trauma. That stuff's not fun.

It's like 2 full-time jobs. Like, all that right there. Yeah, like 2 full-time jobs. Yeah.

It is. And yet, again, the only way out is through.

Right.

And you do have to find someone, at least find one person in your life who can be there to say, "You can do it. You can keep going." Mm-hmm. And we've heard that so many times through the podcast. People will send us a message and say, "You are some of the very few voices in my life that one, understand what's going on, and two, can say you can get through it. It may make really hard decisions like selling your house or selling an RV or relocating to another state or living in another state. And those are decisions that I would have never imagined having to make in my life.

Yeah, yeah, yeah. I think you grow up in a certain way or like for me and my family, like maybe lower middle class type of existence. And you mentally in your mind paint, well, you know, I'm going to go do this. I went to college and then I'll go do this and this. And you don't factor the enormity of an insistent chronic illness into that mix. So what you don't realize is that you can't paint the trajectory shape or the trajectory of your life out and dictate. We don't have control like we think we do, and Lyme is just a reminder of that. And so then it forces you to ask, what do I have control over every single day and every single hour? And then to do that thing. I have to do that thing. Yeah.

Well, you and I have talked a lot about stacking habits.

Yeah.

And yeah, because I feel like that's it. I've said it on the podcast before, but about 18 months into juicing and taking supplements and doing colonics and just implementing hours and hours a day into a health routine, and that was all I had. Like, I could do the routine most days, but then that was it. Like, there was nothing left over. There was nothing left left in me emotionally after doing all of that stuff. So it came at a tremendous cost. But I remember about 18 months into it, into doing this thing that I didn't want to do that was messy and expensive and time-consuming, I realized I had learned something very valuable in the process of just doing this thing that no one saw just for myself every day.

Yeah, well, there's, there's a, there's a theme that's coming up there, and this is something I've been excavating emotionally, is like, I never thought that I was worthwhile enough to spend that much time on. I felt a lot of shame that I would have to devote that much time and money and energy to myself, like I should be smaller, I should occupy less space.

Wow.

Yeah. And this is all coming to light now. And that is a pattern that is being broken, my friend, because it is not true. And so I am learning to take up as much space as I need to, to heal. And what you realize is if I take up, if I do what I'm gonna have to do, and it's gonna be extreme, like most people are not gonna understand all these home treatments I'm doing and how David and I are going far and wide to get the right treatments, but I am leaving a pattern for people in my wake. And my goal is to leave healing in my wake so that every person in my life and in my Healing from Lyme support group has a pattern and says, she, she, she said that she was worth this, all of this. She was worth it. And I am worth it, too.

See, that's so interesting because we started talking about habit stacking. Which you and I has, it saved both of our lives and we have talked about it extensively. But then we went directly into a topic of worthiness.

Totally. It always ends up back with worthiness though. Yeah.

And I would have thought, I wouldn't necessarily have said that I was taking up too much space. But of course, when you're consuming tons of resources and time, it feels, yeah, there's so much shame that comes up because you don't want that. You, I don't want to be a burden. I want to be contributing. To my household and our goals. And yet the worthiness factor for me came up when I gave myself permission to just— if it takes 6 hours to implement this protocol every day, it takes 6 hours. Am I trying to get faster and better? Yes, but that is what it is at the moment. And that is OK. So I had to give myself permission to invest in myself.

Yeah. And to keep investing in yourself. You know, even as you're going to have to be taking care of your son and you're trying to help Aaron and, you know, it's like when David broke his leg, I was still really sick, but I was helping David. It's like, you know, you continue to invest in one another and that, that next right decision. And there's not really good patterns in our world, in our culture, of people that are investing on that level because life is precious and life is worth it, right?

Yeah.

And so our lives are giving people permission. I believe that our lives are giving people permission to say, I've got this shame coming at me from the culture, from my background, from my origin. I am going to come against that. And I'm going to create a life where I am valued just because I exist. Like, I've been hated on purpose for a reason, and I matter because I exist, and my health matters because I exist. I am not worthless. I'm not a throwaway just because I can't be functioning or work right now. And that's a bold thing to do. That, that is— that's what turns turns people who are sick like us into warriors that rise up on behalf of other people with so much compassion and understanding and empathy that it's like the sky is the limit. Like, I'm looking at our marriage right now, and we have just been through it in the last 3 or 4 weeks with very few answers on some things. But you know what? We've moved forward. Every week the needle has moved forward to the point where we finally looked at each other and I just said to David, I said, I can't wait to see what the next 12 years bring. Because if we went through this in the last 4 years, I don't know what we're gonna do, but it's gonna be big. And I don't mean big like we're gonna go out and, you know, earn a million dollars. I mean, there's gonna be impact. There's gonna be meaning. Because we don't give up and we don't give in, you know.

So how much of that have you had to foster yourself? How much of that— I am going— how much of those mindsets have you had to foster yourself? And like, to me, that's just been the thing that I remember getting to the point where my neuropathy was so bad that I would have to sit with my feet up. And here I have 5 little kids. I'd have to sit with my feet up up every afternoon because that's when it would kind of hit in. And if I could sit with my feet up for 2 or 3 hours, it would go away to some extent, to the point where I could get up and keep doing stuff. But to me, the— I have had to pull strength from so many different sources because of what we were up against. And yeah, and it was so confusing to not understand and to have this thing continually with you that I felt like I had to learn how to, one, feed myself, which was just purely taking care of myself and knowing I was doing my due diligence to get to the next level. And then two, like borrowing courage from whoever I could. And it was a lot of authors, it was documentaries, it was people that weren't really in my life because I didn't have a lot of people who new Lyme. But how much of that for you has been just this internal game that you've had to learn to play at a whole new level?

Yeah. You know, I had symptoms of Lyme when I was born. And I don't know if I've ever told you that or not, but my feet were both swollen, and my left foot went down immediately, and my right foot has always remained swollen to this day.. And so, eventually, when I was— they just couldn't figure out what it was. And eventually, when I got diagnosed with Lyme, even though they'd already done a lot of tests, they kind of deduced that there had been infections in the right lymph nodes at the top of my leg when I was born. It's the only thing that we can really make sense of it. We don't know which infections they were. But my leg is actually getting better. Now after 47 years. Now I'm treating my Lyme. So I grew up with a disability. I also grew up in a, in a religious background as a pastor's daughter. They gave me a very specific set of ways of looking at my worthiness and at God and what I was worth, whether I was worth much to him or to others. And In some ways, it was very damaging. And in other ways, it provided an introduction into me discovering— eventually discovering my worthiness. So as I got older and I started to read— I'm a real reader and a learner. And I always want to learn more. I started digging into that more and started realizing I was going to have to come up with a faith that I, number one, believed in. Like, I actually believe this is true. And number two, it's going to have to work. It's gonna have to work. I'm gonna have to feel that I belong, that I've been created on purpose, that it brings joy and life to me and to others. And so I've had to fight really hard over the years, just very gradually, to come to that place and have had discoveries along the way, and I'm still having discoveries, but I just I'm not willing to give up. So part of it is internal resource, but I grew up with a literal limp, you know what I mean? Like, I grew up feeling like I was the outsider, like I'm not like all the other children, I don't know why I have this issue. I was able to work and to get around, but it was always like impeding what I really wanted to do. Like, you can't go on this trip, or you can't do this, and so that combination of things over a period of many years, there was a certain amount of strength that I was able to see in people who are marginalized or have some kind of disability or illness. And so I think I, you know, I just feel like so many of the pieces of my journey are now being filled in with Lyme disease and with healing from it, and I'm going so deep emotionally. So it is a personal journey, but my therapist and my friends and my husband and my Lyme group, they speak so much truth and courage into me that I am choosing actively each day and very, very much on purpose to take in those messages and think on them and believe them. And then my feelings follow my thoughts. So over a period of time, I'm still in process, I'm still working on it, but this does get easier. I want people to know that on the Lyme journey, in a certain respect, you have to start dealing with physical things first before the emotional and the spiritual and mental can— you can move forward. But you can start by changing what you're listening to and believing, and it will start sinking deep down in, and it will yield benefits.

I can attest to that, Suzanne.

Yeah, yeah, yeah. Can change the way you think.

I've had to re-examine on a deep, deep level, and it's amazing how deep some of those thoughts and some of those actions are. Like, you, you hear one word and you act this way, and, and to not do that is extremely difficult. You have to be extremely brave and honest with yourself.

Yes. Which is hard to do. And you— it's a process. And I just even today was reminding myself, I'm going to give myself some grace in this process. And I was talking to David about it because I want to be the same person in every setting I'm in. In therapy or in spiritual work, they call that integration. So whoever that is that you're becoming with the discoveries that you're learning in your life, that you can walk in something with your family or something with this group and the other group, you may not say the same things in every situation, but you're going to be the same person. You're not going to try to please every group, right? That's exhausting. And that is a recipe for burnout. And so I would say, like with you, Aaron, it's like my long-term goal is integration and to give myself space to integrate, you know, and And every person I meet, I have so much more grace for them than I did at the beginning of my journey. I, I see them as another person that's trying to learn and they're trying to grow and they're struggling through. And so I have much more ability to let them be where they're at.

Can I ask you a question, Suzanne? Sure. Now, what you've described is unique. Your attitude is very unique. There's some people that go the opposite, they go real negative, right? What are the choices? Why did you choose to go positive instead of negative?

I think at some point on the journey I have been a person that always pulls herself back up after hard things happen. But at some point on the journey, I did realize that this was about me either living or dying. And I didn't— I couldn't stay in the limbo place of shame and of feeling like I was occupying too much space and I shouldn't be sick and I shouldn't need this and I shouldn't need that. It was too painful for me to stay there. I either wanted to die or I wanted to really live. Yeah. And I expressed that to David. I said, you need to let me go. And he's like, no, I don't want to let you go. We're going to try to fight through this. So we both decided, and I told him I would try, you know, I would do everything I could. And he's done everything he can. And here we are. We are a lot farther down the path because we just decided that life, life mattered, and I was going to try to choose life.

Well, and there's such a difference between living and existing. And I think for me, like, I existed for so long that I'm like, I can never go back there. And won't. I won't. And we've talked about it a lot. Like, even as we've come out of my major reinfection and different things, I'm like, I want my life to look differently than it would have because of what was lost, right? Because of what was learned. And because you do realize life is very short. And those moments of living, one, you got to create them on a daily basis for your own well-being. But you have, like, truly living, not existing, not enduring, not being put in a box you don't want to be in, right?

Daily choice. Yeah, yeah. There, there— it's a, it's a freedom that you start to taste, like, oh, could I step into that freedom? Could I do that? And then when you start going down the path and you're like, oh, I think I am going to live, or, oh, I think we are going to make it, or we're going to be I was able to make it through this financial crisis or that emotional thing. It's kind of like you build a little bit of steam and we'll even talk about it when things have come up. And I know you guys went through a thing where you had multiple things going on, you know, within short windows of time. How is it that 7 things are happening? You know what I mean? It's just like mind-boggling. And we will remind each other of what we've already come through. We will say, you know, remember when this was like this and then this happened and this happened and we got through it. And even when I hear from both of you and I realize what you've gotten through, anytime I hear from someone and they're like, this is where I was at, but then I was able to realize this truth and eventually this happened and now I'm here, it inspires you to keep going. And I think what's really required long-term long-term to get through these things is an openness to good possibilities happening and an openness to people. Because, you know, we've met like online and then like people in our neighborhood, I've realized we need them. They may not even know I have Lyme or they know I do, but they don't understand it. We still need them in our lives. Like we still want to wave at them and be like, hey, how are you today? And have a genuine interaction with someone. Like don't discount any of the interactions that you have the people placed in your life. You know, they're there for a reason. And so just like really working on openness to change, openness to growth, openness to a door or a window opening that was not your plan, but maybe it's going to lead you somewhere, it's going to help, it's going to, it's going to bring you through. And so there's like this weird flexibility that you develop Yeah, weird flexibility. Yeah, it's odd. I mean, it's like you try to explain it to other people and they're like, what is happening? Like, what are you going through? And then, and you're like, well, that's just how it is. And we don't know, but somehow it will, will come through that to the other side. And we're trusting, we believe, and we have faith through that. We don't know anything about how that will happen, but we'll just do what we can do today. And then we'll just keep going. Aren't those the best kind of people though? Yeah. I mean, the people that you want to have at a dinner party are not like the ones that had everything go right in life and they were handed like a golden platter and like, here you go. Or, you know, the other dad handed down a business and they never had a sick day in their life. No, the people you want at a dinner party for meaningful conversation are the ones who have endured and persevered they've made choices, but they discovered love in the middle of chaos. And they are, they're like people that bring love with them. They don't bring the negative energy into the room. They've developed the ability over a period of years to bring the positive and the good and the delightful and hopeful. Yeah. And we don't feel that every day of the year. No, we're going to express our emotions. But these are the people we're becoming. We're becoming the people that you would want to invite to a dinner party. I like that.

Yeah, that is good.

Yeah, you're right. It's hard lessons learned in extreme circumstances. That's what I've really liked about this book, The Obstacle Is the Way, is it's just filled with story after story of people who have gone through incredibly difficult things. And we, we feel like we're— we are in the midst of dealing with some really hard things because we need to put Nate through some type of treatment, and Aaron is dealing with a bunch of Crohn's stuff, and he needs to do some type of treatment.

And all of which—

all of which are very expensive. And then we're juggling— we have a daughter with a bunch of mental health needs. And her needs are different than their needs, and trying to meet all those needs and still be a family and run a business and do all those things.

And yet—

And hide from the coronavirus. And hide from the coronavirus.

Right. And yet those— Right, in the middle.

Those really, it does make you weirdly flexible in the sense of you have to be okay with uncertainty and unknown and yet having that inner courage to be like, no, this is the route we're headed down because this is what we need to do next.

Yeah, I feel, I feel, I feel that courage rising. I do. I feel more capable of— I guess we learn it first with our doctors. You know, we go for years with doctors thinking, well, I can't tell them anything They know what they're talking about. They know what my diagnosis should be. When in reality, they're trying to help, but they don't know. And so we first maybe learn to speak up there because we realize that our lives are at stake. And maybe that's the first place we start speaking up. And then we go from there and we build out with relationships, like, who am I supposed to be? And what is this supposed to be about? What's my life supposed to look like? And we start developing those courage muscles And we have ripples for sure, but they, they just grow stronger over time. We can become who we really are. We can be who we are and be okay with that and take joy. And so we look for ways, those, like I was talking about, moments of joy in the week, because sometimes it just feels like all we're doing is treatment. Treatments and juicing, coffee enemas, and ozone, and, you know, all these things. So we have a shaved ice truck that— like a food truck that, you know, coronavirus or whatever, there's not a lot of food trucks around, but they're going to different neighborhoods and you can like schedule the time for them to come to your neighborhood. And so David hooked them up, they're going to be in our driveway at 5:45 tomorrow.

Oh, fun!

And it's gonna be 77 degrees in Indiana, and we can social distance with chairs 6 feet apart. So we've got our little 3-year-old friends coming over and another friend that is healing from Lyme and a few people, and we're all gonna— it's like kind of a fairly healthy version of a shaved ice, so we're all gonna be doing that in the sunshine tomorrow. And I told David, I said, you know, those are the things— that's us fighting back against all of the hard and bad things or the obstacles in the last 3 or 4 weeks. That's us saying that doesn't define our life. There are still choices we get to make. And what could that look like? And so that's what it looks like tomorrow. And then so every week, it's almost like we ask ourselves, what could we do this week that we could look forward to that would actually be something that would bring some kind of joy, you know?

Yeah.

Yeah. Wow.

It's immense.

It's immense. It is immense. And I'm so glad we're on the journey together and that, um, that we can both validate and encourage each other that somehow, even though we don't know how, There is a way through the latest obstacle, and we're not going to give up. We're going to keep developing the courage muscles, keep validating and honoring one another, and walk into our worthiness, you know, and be a light for other people that really need light too. Um, it's a good journey even though it's a hard one.

Yeah, yeah, you're right.

Well, thank you for being with us today.

I loved it. I can't see you still, but I've been picturing you the whole time.

Hi guys, I want to let you know about a book I wrote called Little Bite, Big Trouble, and I'm going to read a review that recently came in. This is from Carolyn, and she says, thank you so much for writing your book. It has become the means by which I have explained Lyme to my 4-year-old 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 LymeVoice is provided as is without any representations, warranties, expressed or implied.

Okay?

Okay, okay. Lion Voice 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, 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.