046 Parenting With Chronic Lyme Disease

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

Sanchez. Sanchez. Sanchez.

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.

Lion Voice thanks Invita Medical for their continued support. Please reach them at 1-866-830-4576. Welcome, MindVoice listeners, where fighting is a mindset, healing consists of choices, and living is the outcome. So glad you guys are here with us. Before we get into this week's episode, a couple things. If you like what we're doing here, don't forget to rate and review us. Go to Stitchers or iTunes and just simply put a little rating for us, and that'll help us get to the top of the list so that others can hear about what we're doing. Also, the subscribe button. We release episodes not always at the same time. That way you get a notification that we've released a new episode.

All the cool kids are doing it.

You know what else cool kids are doing is supporting us. We need a few partners come alongside us and continue to help us financially to keep bringing these good messages to you.

Yep.

We've heard some from so many of you and, and are, are so encouraged that this is actually helping you.

And well, I think one of the most consistent messages we get is that when people listen to Lion Voice, they don't feel alone.

Yeah, that's a good way to put it.

Yeah.

So if you want to help us do that, we're looking for some partners. Go to Lion Voice and go to a Partners and Support Us page, and you will find a way to do that. You can do it one time or bimonthly. Uh, and don't forget about Little Bite Big Trouble, the children's book that Sarah wrote.

Super cute.

Yeah, and I think you guys will enjoy it. It was really a way that Sarah used to therapeutically—

yeah, well, this whole thing has been therapeutic. Every episode has been therapeutic, every blog post. It was the only way I could figure out to cope with all of it in a healthy way. Yeah, and it's been very, very rewarding.

Yeah, yeah, yeah. Okay, well, this week's episode is with our dear friend Heather Getty. We've had her on the show before, but this time we're talking about a really difficult subject, and that is parenting while having Lyme.

Yeah, so hard. Yeah, so hard. I think Heather does a really good job. There's a lot of depth in this episode, and it's not necessarily the specifics of like, here's how you make meals when you can barely stand. But it's a mindset, an overview, and just some very specific things that both they have discovered and we have discovered in trying to stay connected with our kids and keep our households running and all those things that are really hard when you can only do one thing a day.

Yeah.

If that.

And even the switch of roles, like recently I've had to switch roles to the more the homemaker. And I take care of things that Sarah's not physically able to at times. And just switching over to that is not an easy thing. So there's just ways that you need to look at it differently. There's approaches that need to change. I think this is just a really good episode.

Yeah, it is.

Enjoy. Welcome, Lion Voice listeners. We are back in the studio. And once again, I have my beautiful wife, Sarah, and our special guest for the second time, Heather Getty. So glad to have all you with us. And we are going to talk about parenting without guilt. So many times with Lyme, there's so many opportunities that go missed because you're dealing with Lyme. That you're often left— if you have kids, you often feel guilt for not parenting more, not parenting enough, or not doing this or that. So we are going to talk about some of the things we've learned through that, and Heather is going to join us and talk about some of the successes she's had. And I, I think you guys are really going to enjoy this.

Yeah, I mean, it's such a crucial topic because especially for people with multiple kids, there's just a factor that if you are trying to care for multiple kids, and especially if you have kids with Lyme, which so many of us do, you're not just parenting. You're parenting and all your weaknesses shine through, and then your kids have issues and stuff that healthy kids don't deal with. And, you know, most families with Lyme have severe learning disabilities at play, and we have had all those issues, and it just changes the dynamic of your life in so many ways.

It's really surprising how many people who have been diagnosed with Lyme then turn and say, wow, look, my kids are dealing with the same things. And how many, you know, we've not done an official poll, but you know, Facebook, we're in a bunch of Facebook groups and just different people we talk to. It seems like everyone we talk to has not just one person, it's the household that's dealing with it. It's multiple people. So that just adds to the whole thing. I mean, like I've said many times, this disease is so evil and it takes so much, and I feel like it attacks the entire family more times than, than not.

So yeah, so we're gonna play a clip from our documentary. If you have not watched Disappearing from Society, it is a 20-minute documentary, and when you sign up for our newsletter, it will get emailed to you immediately. And it's just a look inside the lives of 4 people, and Heather is one of those. So I'm going to play a clip, it's about 2 minutes long, from the documentary, and then we're going to talk about the clip that we hear.

Almost for a solid year, my husband and my oldest daughter did just about everything, and all the other kids just kind of had to pitch in and learn how to do things around the house. The single biggest barrier to adequate treatment, because I live in a state in a state where it's not really widely recognized by most doctors, I would say is distance and money. The more I have talked and met with other people that are dealing with chronic illness in other states, it almost doesn't matter what state you live in, you've got to travel. Everyone kind of will say there was a moment where they knew something needed to change. And for me, that moment, I had all my kids around the table We were going around and just talking about how, you know, God has given everybody gifts and we're all good at different things. So we decided to do a little experiment. We went around the table and when I got to my daughter Rowan, who's 11, it was her turn and she was supposed to say something that I was good at. She goes, "Mom, you are really good at..." And she paused and then she said, "Mom, you are really, really good at..." And I could tell that she was really searching to find something that I was good at. And trying not to cry. She said, "You're really good at sleeping." And I just remember that that moment was so painful for me because I remember going into my room that night and just praying like, "Dear God, I don't want my children to remember me as being good at sleeping." I'm still not sure why there is so much shame involved with illness.

But there is. I knew I was giving my best, but chapters of my life came and went without me being fully present. There was so much loss and sorrow in losing your independence, your career, and your freedoms. For so many years, I wasn't able to be my true self, love on my kids, or flirt with my husband. The illness eventually controlled my every move. When you spend years trying to stay alive, you forget how to live.

How to laugh and how to love.

So now you can wipe away your tears like I am doing.

Yeah, one of the things that happened throughout filming that documentary is that I'm asking the questions from behind the camera, Mackenzie's filming, and for the most part I just have tears like streaming down my face. And I mean, when you were telling that story, I obviously knew that story in advance and had set up the interview and stuff, but It is. It's— there's so much pain in the aspect of parenting and not being able to be the type of parent you anticipated. And so that's just what I want to talk about. Like, just for me, because I was sick for so long, I felt like my kids didn't really know who I was. Like, they didn't remember me as a healthy person, but also like just the guilt that goes with that. And for me, that was huge, is I realized early on that I was parenting out of guilt to a certain extent, but I almost felt like I had to compensate for my weaknesses. So take us back to that moment when you're sitting there at the table with Rowan and your kids and, you know, how you kind of process through that.

Yeah, it was definitely not fun filming that part of the documentary because—

but it was one of the most touching parts, Heather. Well, I mean, not just me saying that. A lot of people said that.

Well, and I wanted to share it because I think that it's important to remember where we've been, but it's also important to stay focused on where we're going, not to— and not dwell in the past. But I definitely think it's important because so many of you listening are, are stuck there right now. So my one hope in doing this is that you can be encouraged that you don't have to stay there, that so many of us have made significant progress or even in full remission from a vast variety of treatment options. And I think that that's one of the things that I love about what you're doing with this podcast and even with the documentary is almost all of us that were featured in there, I believe, maybe except for one or two, have just made such huge, huge progress in this. It's not, that was a glimpse into our lives then, but that's not where we are now. And so, yeah, but that day, I mean, definitely it's taken me a lot of time process through all those things. I know we've talked about this a lot because we each have big families and we've all been so affected by this. And I think even before, we've talked about doing this podcast now for a while with having me on here, but I don't know that I could even articulate where I was and how I'm getting or how I've gotten to where I am now until recently, probably. So anyway, yeah, I do. I remember that day with Rowan and I just like heartbreaking. I mean, there was almost no words after that. I just was crying and I was just thinking, Is this gonna be my life? Like, is this— and going back to our previous podcast episode where we were talking about mindset, that really was one of the defining moments for me of I have to fight this. This is not what I want my kids to remember me as, was someone that just was sleeping all the time. And there were so many little things like that with all of my kids that Some of my kids were very, very young when I got sick.

Tell us the story of the Easter eggs.

Remember you were worried, it was a couple years ago, you were worried that you hadn't decorated Easter eggs and it was either Rowan or Ava was like, "Mom, the kids don't even know you're supposed to do that on Easter." Yeah, some of my older kids were like, no, the younger kids were like, "What are Easter eggs?" And I realized it had been like years since we had done any kind of Easter egg thing that it was sort of, yeah, kind of a sad realization. And I mean, obviously, You have some of it's funny things like that and some of it's just heartbreaking and you really have to work through it because it is, it's sad when you can't go to some of your kids' events or you feel like exactly what you said earlier, you're not able to parent the way that you want to. I remember there was, well, several things, but one of the times where my little guy who I think he was probably 4 or 5 at the time, and he said to me, "Mom, are you just tricking us that you're sick?" And I said, "What do you mean?" And he said, "Well, are you just tricking us that you're sick? Are you just saying that you're sick because you don't want to jump on the trampoline with me?" And I remember, oh yeah, it was totally heartbreaking. And I remember thinking, no, of course not. But kids don't have the perspective to process everything. And one of the First signs I remember that I wasn't doing well was I had been on the trampoline with one of my kids and hurt my neck. So pretty much from that time, and that was probably 3, over 3 years ago, I haven't been on the trampoline with my kids. Now, obviously, as I made progress in my health journey, I've been able to do more things with them. But yeah, I really had to get creative and find new ways of relating to them, especially in those years when I was really sick. Because kids don't know. And saying things like that, that was just, yeah, it was very heartbreaking. I mean, that comment, the one with Rowan talking about me, just, she really couldn't find anything I was good at. I remember when I first started cooking again and came back in the kitchen, I hadn't really made anything in probably close to a year or over that other than scrambled eggs. And one of my kids, it might've been Rowan too, had said, "Wow, Mom, I forgot how good of a cook you are." And just little things like that, you don't even realize sometimes it's a blur of months and weeks and things that go by. And yeah, it's hard. We've had to work through so many different issues with our kids. With my older ones, it was learning how to reconnect with them, especially with teenagers. I have— my kids are 18 on down to 5. And really, when I first started having issues, my oldest was probably around 13. So maybe even a little younger, maybe like 11. And obviously the younger ones weren't even born yet. So dealing with that over, over these last 7 to 10 years, it's been just kind of interesting sometimes what comes up that you have to process through and recognize and then correct. There's been so much rebuilding from what we've lost. And with my older ones, it was definitely a relationship because you just don't even have the energy. And, you know, teenagers like to talk late at night where I couldn't stay up late at night. And so I didn't, I wasn't able to communicate with them and trying to rebuild those relationships has taken so much work. And there's just so many, I mean, countless ways that you deal with dealing with your kids, trying to rebuild relationships, trying to retrain because kids are great imitators and do what mom does, especially, you know, in our family, our kids were, we homeschool and they're home all day. So when they would see me too tired to get up off the couch to do something, they would use that also as an excuse. Or I remember asking them to do something simple like fold the laundry and they would say, oh, my back hurts or my head hurts or I have a headache. And I remember thinking, no, you don't have a headache. I have a headache. But they just do. That's just what they do. They imitate. And so we've had to work through revamping chores, revamping work ethic, which is something we're still working on. Well, and that's— Those are big issues that take a long time to to go through.

I think it's true. That's one of the reasons I wanted to write that, uh, write the book Little Bite Big Trouble, is because I think a lot of times you can't articulate the losses until further down. And same thing with our kids. I feel like we were just in survival mode, and so then they operate in survival mode, and we've had to retrain all these habits and behaviors. And I remember coming home from like Costco or something and Nate says, well, I need to sit for a few minutes with my feet up because I had neuropathy for years. And I'm same thing. I'm like, you don't have neuropathy. I have neuropathy. Get out there and bring the groceries in.

Yeah. Yeah.

Well, and one of the other things, when Anadea made me a Mother's Day card, I think last year, it was like she was answering all these questions. My mom's favorite color is blank. My mom's favorite activity is— and she put my mom's favorite activity is juicing. And I was like, because that's what she saw me do every day.

Yeah, for years. Yeah.

So in her little mind, that must be something I enjoy.

Yeah.

Yeah, yeah.

It is really tough to, to— I mean, kids are not easy to raise in the first place, and you have to be creative and proactive, and then add in the Lyme factor and it is really tough to almost not sympathize with them when they are having a hard time. I see that with, with Sarah, and I'll call bullcrap on them every once in a while because, you know, they'll be saying, well, we can't do this because of this and that. And Sarah sometimes will give in to that just because, one, she feels a little bit guilty, and then other times she kind of— even her own mindset is in that in that line. Now there's a balance on my part as well. I can't be Mr. Authoritative and, and come down on them, but at the same time you still have to know when to say, baloney, that's enough, where you need to get to do your chore, you need to do this, you need to do that.

Yeah, all my kids are like, I need a mental health day, and I'm like, okay, I'll come in.

I'm like, mental— get out of the You turn off your iPad, get out there and do the dishes. What are you—

and I honestly, I wouldn't have been that type of parent had I not been sick. But when they have had a headache for 12 hours, or, you know, I get that, and I definitely am easily, easily swayed into letting them sit and rest, honestly, because I wish I had had that opportunity when I needed the rest. But it is such a hard balance. Let's just talk about just some of the basic logistics, like Okay, household chores. Let's spend like 2 minutes talking about chores, 2 minutes talking about meals, and just because it's such a big issue. And I think when your kids are little, you're just kind of used to doing everything anyways. And then, but gradually as they get older, they should be taking over some responsibilities. And, and yet I didn't have the cognitive function to say, hey, look, we're all in this together. Now I can, I can say, hey, look, we're all in this together. If we want to be able to go to the pool once a week during the summer, if we want to be able to do these activities, we as a whole need to come together and figure out how to keep the house picked up and cleaned. And so now it's easy to have those discussions and to delegate, but it wasn't for a long time. And so I just could never figure out if I was just perpetually lowering my standards Or if we were all just lazy or— So just tell me some of the stuff you guys have figured out. I mean, you're in a different boat because your kids are home all the time.

Yes. So with that comes some unique challenges for sure. And I was not a super organized person before I got Lyme. So I feel like that always— Lyme always kind of magnifies your weakest areas. And so that has been something that we've— just another area that we've had to overcome, and certainly not that we've arrived, but in a lot of ways my kids, because we didn't have family here to help on a regular basis, we did have people come in from time to time, but yeah, my kids really had to help out a lot, and my husband has a unique work schedule, so some days he's home, and sometimes he's gone for 2 or 3 days at a time and doesn't come home because he's does shift work as a firefighter. So we really just have had to— schedules just went right out the window because you can't schedule a chronic illness. For years I thought if I could just find the right schedule, then everything would work. But I realized that that's—

so what did you do?

Do you—

did you go from schedules to task-based?

Well, currently right now we have pretty much routines for different things. And we have Wednesday is your day to do the dishes and things like that. But we kind of have a morning routine that has worked really well. And then that way I'm not asking the kids, did you brush your teeth? Did you make your bed? Did you unload the dishwasher? It's all on their morning routine. So then I can just have to ask one question and say, did you get your morning? Or I'll say, did you get your morning list done? And then they can tell me. So whatever that entails for that child, whether it's watering plants or feeding a cat, they are required to get that done.

So it's all— the, the routine is a little bit different with each kid somewhat.

I mean, obviously everyone's going to brush their teeth and make their bed, but then—

so yeah, run down the list for us, uh, you know, because a lot of times people need ideas. Run down your list of a typical morning routine.

Well, I think keeping things as simple as possible, especially I mean, and honestly, when I was really sick, there was no routine. It was just everyone helping whoever was available at the time.

Yeah, we used to say, "Nobody's dead.

We're doing good." Yes, you have to lower your standard. I think there's so much guilt. And I relate to that too because I'm in different groups and I talk to different parents of whether the parent is sick and they just feel like they feel bad because they can't give the ideal experience or ideal parenting. Of course. But you know what, they're— for me, one of the biggest things that freed me of guilt was remembering what was most important. And relationships are always what's most important. And sometimes you can't even do that. But I, as much as possible, I would try to sit and fold the laundry if that was all I could do. Maybe I couldn't, or I could help direct what they were doing. Or try to read with them, things like that. Maybe read a book out loud while they are sitting there folding the laundry. Some level of trying to connect. And, you know, if I could just get up and cycle the laundry and then sit back down, that's what I could do. So I would say definitely if you're, if you're super sick— and I mean, it's hard because everyone's situation is so different. Some people have help, some people have their kids in school, some people don't have help, Some people are trying to manage taking care of elderly parents and dealing with a chronic illness in the family. I mean, there's just, there's such a wide range of circumstances, but I would say overall my advice would be keep it simple and focus on essentials when you're really sick because sometimes you're not even gonna get to that. And like you said, many days I was like, okay, we got to the end of the day, everyone is alive, everyone has been fed, and we have mostly clean clothes. So this is a win.

This is a good day.

This is a good day. You just have to recognize the fact that, and I would always say to my husband, I'm like, you know, when you're on a desert island trying to survive, you don't really care if the floor is swept. Like that is not a priority. You don't really care about so many non-essential things that I used to be concerned about. I feel like in a way I've been freed from those things. Who cares if there are matching napkins or silverware on the table? I'm just happy I had the energy to fix dinner. And so, there was, there's such a phase of healing. There's such a phase of going through illness. And I think as long as you focus on essentials, keep it extremely simple because no matter what system you choose, routines, schedules, whatever. Some people like Mark's structure, some people don't. It's only as good as the person managing it. So any system, any book, any chart, any whatever, you have to have someone that's managing that system. So if the manager can't manage, And I think especially dads have a hard time with this because, you know, my husband would often get frustrated with the kids and I would say, but honey, you haven't trained him how to do that because you've been working two jobs and I've been too sick to demonstrate the proper way to whatever, weed the yard, clean the bathroom, things like that. And so it ended up sometimes he would get frustrated with them or sometimes even I would get frustrated and then I would pause and think, Wait, have I taken the time to properly show them? Am I, you know, holding them to a standard that I haven't, you know, been able to do? And a lot of times the answer was, yeah, I haven't.

So we've had that conversation so many times.

Yeah, you've lectured me a lot on that.

Yeah, he'll come home from work and it's a day that I was not feeling well and/or working and/or, you know, running to appointments or whatever, and he'll come home and be frustrated with the kids, like Why isn't the table cleared off? Why does, you know, why does everything look abandoned and neglected? And I'm like, you can't just come and start dictating this needs to be done, this needs to be done when we have not set up the structure for that. And, and again, one of the things we've been doing is unlearning all these negative, unhealthy habits. Because same thing, if I could get food put away in the fridge, it was kind of like shoving it in and shutting the door and hoping it doesn't fall out. I couldn't like take time to get it organized, go through it. There was just so many things I couldn't do, and our kids have learned to function that way. And so we have to constantly say, look, this is how we did things because we were in crisis and I was fighting for my life. We're no longer in crisis. That means when you wipe the table, you wipe it twice and you wipe the benches every time.

But I didn't—

I couldn't require that of them before Even though, I mean, it's just every, every system we had fell apart for several years.

Yeah, because you're the manager and you can't enforce. And I mean, I, I had read so many, you know, books in my early homeschooling days about chore systems and managing the home and, and they're all wonderful, but there are none written to a parent dealing with a chronic illness, which maybe that's a good idea.

We've talked to you and I have talked about that. I know.

Um, But all of those, and I've heard often, only expect what you can inspect. And if you are not willing to follow through with a consequence, and setting that up takes time. Once you get it to a level of repetitiveness, like 3 months of regularly inspecting chores, regularly holding kids accountable, I feel like at a certain level, maybe 10 and up, then you should expect to, some things to run on autopilot for the most part. But if you're dealing with small children that still need help and still are mastering the basics, again, I felt like my biggest challenge when I was really sick was consistency because again, I could be consistent sometimes or when their dad was home, he would be consistent, but then he would leave and then there was no consistency. And so, It was such a struggle. And yeah, I'd say depending on where you are in your level of illness, don't have high expectations. And above all, try to have a positive attitude because whatever you can get done, you just have to glory in that for the day and move on. I mean, now we have a lot more, I have older kids that have devices and phones and things. They can set reminders. Oh, my job is to sweep the floor. And they know they're responsible for that every night. So, And I mean, even now we're not consistent with checking 100% of the time, but we've made a lot of progress. So I feel like there's a lot more automatic stuff that happens, but I have two older teenagers now, 18 and 15, whereas opposed to when I was at my worst, I didn't. My oldest daughter and my husband pretty much took over everything and the little kids would help pitch in here and there, but really we only had about two people that could actually do any chores to a satisfactory level. So it was a lot of pressure on those two.

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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One of the things that we've figured out now, and again, I'm healthier than I was, is especially when there's so many people, I pretty much have my days written out in advance. Not, not necessarily day by day, but my week. And, you know, there's days that I juice, there's days that I do enemas, there's days that I do certain things. And one of the things that we found, which I think is hard— I have a 13-year-old, a 15-year-old, and a 17-year-old. And they all have things they want to go and do and events and things that they want to be a part of. And I already had to say no. Like, for Nathan, we haven't been able to let him play sports consistently. I've had to say no to that because time, energy, and money. But then when he's like, hey, my friend invited me over to the pool for the day, can I go? And just having to go get him and bring him back sometimes was too much in addition to everything else that I had. And so for me I would out of guilt be like, okay, yeah, let's try to make that happen for you because I want that. I want them to go and experience everything. But then oftentimes by the end of the day, I'm completely out of energy and then I'm frustrated when one little thing doesn't go right. I'm like, it's the end of the world and, you know, emotionally spiraling backwards. And so for us, one of the things I had to do is I do kind of have the weeks done up, and I kind of have to know things somewhat in advance. But if they would say, hey, I really can— my friends are getting together and can you drive me? I would have to say, this is what's on my list for the day. I don't have time to do that. If you want to do one of these tasks for me, then I will have time to drive you to that appointment. So that has worked with us to some extent, um, but again, I can just tell The years of operating out of guilt as a parent have changed my view of myself, and it's changed the way we interact. And, you know, because I don't, I don't want to have these conversations where I'm like, yeah, if you juice for me, then I'll drive you to your friend's house. And yet we've had to keep having all these discussions because we don't operate like a— I'm not like other moms.

I agree. I think For the longest time, I felt so defeated and you just feel like a failure because you can't do the things that you need to do or want to do. And I think part of my mindset of moving past and my mindset towards healing has been letting go of some of that guilt, just recognizing that, you know what, Abraham Lincoln didn't learn to read till he was 13 or 14 and he grew up in a log cabin with a dirt floor. His life was not easy and yet he became one of our greatest presidents of all time. I think it's so easy in modern America to compare ourselves to our neighbors. There are countless people down through history that have had horrendous upbringings, very difficult life circumstances. They've lived through poverty, illness, all kinds of things, war. Things are going to happen in your life. And I feel like everything that can, that comes against you, it can either be an opportunity for change or it can be an opportunity to let it defeat you and be bitter And so there's this process, there's this real fine line I feel like I've had to learn of acknowledging the losses, yes, but don't, don't stay there. And because it will keep you stuck and you have to recognize, and for me, you know, we love the Lord, we're Christians, we believe in God's ultimate working in our life. And so we know that he can bring everything together for good. And there have been some beautiful things that have come out of this trial with chronic illness. And I fully believe we're going to see even more come from that. And yes, there are losses and we've had to work on them, whether it's retraining our kids, you know, with their attitudes or their work ethic. But then there's also been good things come out of it too. So I think that, you know, like for me, going back to Hudson, my little guy who wanted to jump on the trampoline with me, You know, I can either, and I was very broken that day, but I felt like at a certain point I'm like, okay, I can either let this guilt eat me up inside every day and lament the loss because it's real and it's there. But moving from not a victim mentality, but to a victory mentality is, okay, one of my goals right now is someday I want to jump on the trampoline with him again. And I don't quite feel that I'm there yet with health. I've done— been able to exercise, I've been able to do some yoga, hot yoga, walking, very lightweight things like that. But I'm a little leery still of the trampoline with neck issues and stuff like that. But I just feel like it gives me something to work towards and it gives me something to be focused on and I think when you, when you have to readjust, just like if you had a child that was born with a special need, you readjust your life. Yes, there's some loss of expectations there. Or say you're in an accident, say your spouse dies. I mean, there's a million things that can happen to you in your life that it's easy. It's so easy to get focused on the loss instead of focused on— so even though I know we're talking about guilt and parenting, and I think we can all relate, I just, because I know we all have those issues, whether you can't see your kids' performance, or you're not as involved, or, you know, we were just talking earlier, we haven't taken a family picture in a really long time. Yeah, things like that. And at times there, there was loss. I would look at, you know, we moved a lot and the financial strain and just lots of other reasons energy-wise. I realized I didn't have any pictures up on the wall for years. I mean, even now I think I have like 3 on the wall in my house that are family pic— you know, of my family. And I remember thinking, gosh, my kids are going to grow up and they're not gonna ever remember seeing a picture on the wall. Like, that's just— you can— and it's kind of funny, but it can kind of be defeating. I mean, it can, it can wreck your whole day if you stay focused on those things. And that's where I just have had to go back and say, okay, what's the truth? Families lived for centuries without photography. They were okay, you know. I mean, true, it's not where I want to be. That's my goal someday, is to have this beautifully decorated home and have wonderful, you know, scrapbooks done and pictures and frames and all of that because I want them to know how important they are to me. But I think that again, it's good to have a goal and acknowledge your loss, but then keep moving towards— keep, keep focused on what's really important at the end of the day. There's just so many other things. And I think if you let yourself get too bogged down by all the losses and all the little things that you can't do, it's just all about where you're focusing on. Are you focusing on what you can't do as a parent or what you can do? So yeah, that's just one thing that has really helped me as, as we've been on this healing journey. It's hard, but I think that you just have to do those things.

And so, yeah, one of the things that we have figured out in saying is we're doing the best we can and that— and we say it a lot in different realms. Sometimes I get into the car and I'm like, the car is disgusting. I cannot believe I'm driving this car. Like everything in our life looks like it needs attention, and sometimes we can give it and sometimes we can't. Or a kid will be like, I need this for school, or I, you know, I need to go get another pair of shoes. And I'm like, okay, we can do that in like 3 days or 2 days. And that's not often the answer they want to hear, but that's what we have to keep coming back to, is we're doing the best we can for everyone in the house in as many areas as we can. Is there lack? Yes. But as a family, we're trying to do the best we can and then having to be okay with that.

I read a great blog post the other day. I don't even think this was by a woman with chronic illness, but it was a mom of a large family. And she was saying, one of the things I say to myself is I don't minister to laundry. And I loved it because basically her point, her premise behind that was just in order to simplify that one area of her life and streamline, she's like, If it's stained, it goes. If it shrinks, it goes. If it's delicate, it goes. It doesn't belong here. And I just have to tell myself, you know, if the socks match, whatever. And I just thought that was so good because I think sometimes, you know, we just want to have everything be a certain way, or you, you have to remember what is truly important and, and focus on that. And I just loved that. So I'm going to start telling myself that more often. I think I don't minister to laundry. It's really—

I mean, because there's so— we want to do better in so many areas, but we can't. You know, even though we can't see an end date, we still know these are fighting mindsets that we're taking on, and we're not doing this forever. It's just, you know, some of it is survival. We have to survive through the end of the week. We have to survive to the end of the month, whatever. But it's okay, you know, and not to condemn ourselves. Because once you add in condemnation, yeah, and, and where you're just down on yourself and you're beating yourself up, it doesn't help. It doesn't help you have the— make the right choices for the future. Does it? All your energy, which we all know your energy is very limited with Lyme, and if you're giving your energy to a loss, to focusing, to stewing on something that you weren't able to do, it doesn't really help. Yeah, we don't have the money to buy the shoes until the end of the week, but for us to get up— I mean, and I've learned this the hard way.

Yeah, we both have.

But for me to sit there and get upset, well, everybody in the house has now seen me be upset, and then that just transfers on and it just keeps trickling down to— till before you know it the entire house is in one pissed-off mood and everybody's angry at each other. And so not to give that energy away to things that you can't help anyway. Like, the money is not going to be here till Friday, so it is what it is. And I mean, that's— those are all conscious choices that you have to make, but at the same time, they're in— you don't have a choice, you know, but you still have to make the choice.

Yeah, you're doing the best you can.

Yeah.

Yeah. And I think that's one of the things we've learned too throughout this, is that if we are condemning ourselves, if we are operating in guilt, that comes out in your energy levels, that comes out in your, in your words. And just the other day you came home and you were frustrated about something, and it was a real thing to be frustrated about. We have a lot of transitions going on in our life right now where moving up to Colorado. But he had only been home for like 15 minutes and I was like, hey, like the emotional atmosphere right now in this house just changed 15 minutes ago when you walked in the door. And this is stressing me out. Everyone's starting to snap at each other and be in conflict. I'm like, we— I don't want to live this way. Like, we live that way because we didn't know and we had to. But I mean, even in credit to you, I mean, you were open and humble to that statement when I said, hey, let's, let's not go down this path, like, let's stop this right now. You're like, yep, you're right, okay. But that took a lot of years for us to get to that point.

Yeah, definitely. We've had a lot of those similar things at our house as well, because it's hard when you feel out of control, I think, in so many ways.

I like Einstein's quote: if you keep doing the same thing over and over and expect different results That's insanity. And so at some point you have to say, okay, the last year I've been acting that way and it got us to here. Let's change it. And to be willing to move forward. I mean, and it's, it's weird, it's easier to take your energy and pour it into those negative behaviors. It is way easier to do that than it is to turn your attitude around and Be humble. But the outcome, I mean, if it was, if it was easy, everyone would do it. Yeah, it's not. But the outcome is much better. So encouragement to you guys, just make the choice. And tomorrow you might fail at it, but try it again and keep at it. Because really, do we want to keep hitting ourselves in the head with the board and expect different results? It's it's not going to work.

Well, yeah, and I mean, we've talked about this in other episodes, but it really leads— all trails that we're talking about lead down to even just boundaries. And, um, I know for you that's been a big— I've seen you transform your boundaries. And so maybe we can just talk, talk about that here in the last segment of— I had to create very tight boundaries in order to stay alive and get done what I needed to get done every day. And while I had helped the kids a lot with their schooling and/or we've done homeschooling, private schooling, I had to just give that back and trust that the teachers my kids were with could be enough for them because I couldn't, couldn't do it. But it does— it requires transformation on so many levels. And I know for you, boundaries was a really big issue because you would— you did not necessarily have boundaries and you were sick. And so therefore you were— your schedule was being controlled by other people.

Yes. And I remember a certain point. I mean, and we're talking about a book called Boundaries by Henry Cloud. Okay. But that really, really helped me as part of my mindset transformation, which I think I'm still going through. But I feel like it was a pretty intense transformation of about maybe 3 to 6 months where I was just just going through a lot of change internally. And I felt like learning how to say no to my family was really hard because I think as moms, and especially as a homeschooling mom, you are always just sacrificing as a parent, putting your kids first. You know, you fix them breakfast and then you eat or whatever it is. And it was really, really hard for me to shift gears at a certain point. And I remember having this conversation with my husband and saying, I don't know how to do this and I can't do this. Like, I have to, I have to take care of them. I can't just ignore them and go juice or do a coffee enema. Or it was really, really hard when I was super sick to be laying on the couch with headphones on and listening to people argue, but I couldn't get up and do anything about it. And I think that those were some of the hardest, hardest moments for me. To just feel so powerless to be able to do anything. And as I began my healing journey, I felt like that was one of the areas that I had to learn. Just like it was crucial that my mindset shift and change, and part of that was setting up boundaries because I had to learn to say no, like no to a kid that wanted to go somewhere when I couldn't, you know, I knew that that was gonna cost something from me that I didn't have to give. Or sometimes even no to my husband. Like he would wanna throw a big party or something and I would say no, or you need to ask me before you take overtime, or you need to, there were just a lot of ways that that operated. And I remember us having a discussion about, you know, one activity per day, or if we're gonna decide as a family that we're gonna do this event this week, then we're gonna actively choose not to do the other things. And that's hard when you have, a bunch of people in your family that love to go and do, and they're healthy and they can do those things, and you don't want to feel like a drag because you're the one that can't do it. Or maybe you have a child that can't do it, and so there's that tension. It really— you've got to focus on communication. So there— because I know in a lot of families, that's one of the biggest issues, is the person that can't go do something feels guilt and pressure from the people that want to go do something. And honestly, I think 9 times out of 10 those healthy people don't even realize that they're doing it and they have the best of intentions. And maybe they even say some things that are hurtful sometimes because they don't really understand. But I think when you're being the person that was sick and being a manager of my home and trying to take back all these areas that I had previously, I was just, I remember just thinking the task was so daunting to move from being basically bedridden and then as I was healing, slowly take back these areas retrain and then learn, okay, what is this going to look like so I don't have a relapse? You know, I fought so hard. I'm not going to, I'm not going to blow everything for one big party or one big trip or one vacation or something like that. And so just kind of learning to gauge where I was and being at peace with saying no and not having guilt about it and just saying, no, I'm sorry, you can't do this, or no, we are not going to do this, or, you know, just having those and just learning that your health has to be a priority temporarily. And maybe that temporarily means 5 years. I don't know. I mean, for me, I felt like my— that, that part of my life was probably maybe 2 years where I really had— maybe even a little more. I don't know. But I feel like now, as I've healed, especially in this last like year, 6 months to a year, I feel like I can say yes more and more. And—

But you had to say no at first.

But I had to say no at first. And I had to make my health a priority. And, you know, my husband would come home. And so again, like you, I would just kind of plan my days and I would say, okay, I'm not doing an enema or doing a detox bath or going to colonics or any of that stuff on days that obviously he's not home. So we would just take turns and I would try to plan things when he was home. And, you know, sometimes it's a tricky balance. I can't say that there's perfect answer to it because sometimes if there was an event, something that my kids really— I felt like it was important to them, I wanted to be able to make that happen. But yes, your healing does need to be a priority because at the end of the day, if you're gone or you get, you know, you can't function, you have to look at it that way. So you have to make it a priority, but it is super hard to transition from a normal, healthy I'm gonna sacrifice for my kids and make their lunches and do everything they need to do. And versus, you know, I'm gonna teach the 11-year-old how to wash the 5-year-old's hair so I can be free to do something else that I need to do. There's just a lot of that that has had to go on. Boundaries are super important.

I just sent a text message to my mother-in-law this morning 'cause Aaron's family does a lot of like, 2-3 day notice events, like, oh, by the way, we're all getting together on Friday or Thursday or whatever. And for us, I typically have our week planned out because I have to in order to get things done. And I already have a couple of things for an event. They planned a dinner on Thursday night, and I had to text her and just say, look, my— I have a meeting at 6:30 that morning, and mornings are really hard for me. I have no idea if at 6 o'clock at night, I'm still going to have the energy to be here and then get up at 6 the next morning. And, you know, you were just saying like people don't understand how hard it is for us to come to things and we try really hard, but there's still things we have to say no to because if I say yes on Thursday, that affects— that can affect my Friday and Saturday. And I don't think healthy people have to think through every single decision. And that's what I feel like we have to do. Anything that takes time, energy, or money, we have to think through and decide, can we do this? And if we do this, what is it going to take tomorrow?

Yeah, especially it just— there's so many different levels of, of being sick. And for some people it's like, oh, parties are out of the question. Or, you know, for the longest time I knew that if I did something in the morning, I would absolutely not be able to do anything that night and probably the next day. Now I'm a little bit more stable in that I can, I can do more and not usually have those consequences. So, um, but yeah, it's a process of learning that and kind of learning where those boundaries are. And I think just knowing that if that's the way you have to be for a time, you know, hold on to that. It'll get better and you can keep pressing forward. And, but for the time being, sometimes you just have to let people know. And And I think too, for me personally, I had to make peace with the fact that other people weren't going to understand and I was just going to be okay with that. I think a lot of people spend so much time trying to— not that advocacy is not important, but that alone takes a lot of energy. And I finally came to a place where I was okay with the fact that a family member, a friend, a person at church, whoever, wasn't totally going to understand my needing to say no to something. Or am I backing out of something, or, or whatever it was I needed to do. And I was just going to be okay with that. I just did. Now I know some people don't like that idea, but for me that was just one of the things I had to do, was, you know, if they don't understand, that's okay. I understand, and that's, that's fine. I'm okay with that. And just as I've been able to take back more of my life, I can do more. And I fully expect that someday there will never be, you know, We won't have those considerations again, but it is, it is a process. And you know, for both of us, we still have some kids dealing with health issues too. And so even though they've made progress, I've sometimes had to set boundaries for them as well and say, hey, you know, I think you've bitten off more than you can chew. So let's rethink some of these activities and until you're a little more stable.

Yeah. Already. That's all super good stuff. It's such a process.

Yeah, it is. Their healing is a journey for sure.

And you do, you have to heal, you know, in layers. You have to heal, you know, I feel like we heal a little bit each semester or quarter that goes by in all these different realms. And sometimes it is frustrating, but I resonated when you said, you know, you have to take back your responsibilities. And I feel like I did that for 3 and a half years. Slowly took back all these areas that were not being managed, all these things that were not being planned and coordinated. And now we're at a much healthier spot. But man, I mean, I fought every single day. Yeah, every day.

Yeah. You really have to take steps backwards in order to move forward. I mean, it doesn't— sometimes it doesn't make logical sense, and sometimes it hurts, and sometimes it's not fun. Regress, but in order to pull forward, you have to pull back.

Yeah, sometimes I think healing is just— it's not linear. It, it has ups and downs. So you're not gonna have this— you might see, you know, huge strides. Obviously, you know, you saw a huge improvement after Invita. I saw a huge improvement where I felt like I took big chunks. But a lot of time though, healing is more you're going to see progress over years. And you have to think, okay, how many years have I been sick? Right. It's going to take you years, just like having a baby takes 9 months. Then they say, oh, give yourself at least 9 months to get back in shape, or maybe even longer. It's a growth process. It's a healing— yeah, healing, growth, all of those things are not quick things. Yeah, they take time.

So, well, thank you, Heather. Thanks for being with us again and sharing what you have. I guess my encouragement to all of you out there is you have to make your own schedule. It has to be tailored to you. Give yourself the respect and give yourself the grace. Yeah. Well, until next time, keep fighting, Lyme fighters. We'll see you soon.

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 Vida.com.

Disease is contrary to life. Therefore, wherever disease exists, life must also fight to exist.

Good job fighting, Lyme fighters. Keep it up. We'll see you next time.

LymeVoice contains general information about medical conditions and treatments. The information is not advice and should not be treated as such. Okay, Lincoln?

Okay.

The medical information on LionVoice is provided as is without any representations, warranties, expressed or implied. Okay?

Okay.

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

Got it.