107 Becoming A "Lyme Mom" with Tricia Soderstrom

something that was harmful to someone else or to herself, you know. And so it was, it was a really hard thing, but we did learn how to support each other in that way. Thankfully, you know, these things can tear apart a marriage. I mean, they really can, and they do every day. Yeah. And so it's so important to remember that we're on the same team and that, you know, this that's happening in our lives is not— it wasn't anyone's fault. It just happened, and we have to figure out how to handle it on a daily basis. And just continue to try to love each other and love our children.

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Welcome, welcome, welcome to this episode of Lime Voice. I am here today with Tricia Soderstrom. Tricia, thank you so much for being here.

Thanks for having me, Sarah.

So give us your story. How did you arrive on this accidental journey?

Yeah, it is definitely an accidental journey. Well, I really don't know exactly how it all happened other than, you know, we must have gotten tick bites. Back in 2006, when I was pregnant with my fourth child, I began to get very, very sick and a lot of pain. I had a lot of joint pain and muscle pain and I was just overly fatigued. And my doctors kept telling me they thought it was just because I was close to 40 having a baby and, you know, all that would go away once he came. But it got worse and I, I was basically bedridden by the time I got a diagnosis of Lyme disease. And that was 2 years after visiting specialists all over the place. Place and, you know, trying to figure out why I couldn't walk, why I couldn't stay awake. I had horrible pain. I, I asked my husband on a number of occasions if I hit my head at some point because I couldn't remember my childhood. I couldn't remember a month ago. I would run into people that I knew, I had known for a long time, and I couldn't even think of what their name was. Wow. And it was so scary, and I just I just remember being terrified, you know, what is going on with me? Because I was always very healthy and I took very good care of myself. I exercised, I ate well, and so this was really strange for me. But after that 2-year mark, I found out I had Lyme disease. And then I recognized that one of my kids was having similar symptoms, not as severe. So we got her diagnosed. She was CDC positive. I was not. Uh, my pedia— my, um, primary care physician thought I was just stressed out. I had 4 kids, I was homeschooling, it was all stress. But thankfully there was a doctor down the hall who was treating patients who had Lyme disease, both chronic and acute. So I was able to get in to see her and that kind of began our journey. And over the course of the next few years, um, basically my entire family was diagnosed with Lyme disease. My husband, his titers were off the charts and my son never got a positive test. He had very mild symptoms. I believe I gave Lyme to him while I was pregnant with him. And then my third daughter, she began having crazy symptoms— facial motor tics, finger tapping, OCD, anxiety, panic attacks, rage. Oppositional defiance. I mean, she just rocked our world upside down. And the pediatrician, of course, was like, you know, she doesn't really have that big of a problem. You know, here's a list of parenting books you should read. She was giving me no hope. She said there was no possible way that all of the tick bites I pulled off of— the ticks that I pulled off my daughter would cause these kinds of symptoms. You know, that— and basically she just kind kind of shoved me aside, you know, for it to leave me on my own to try to figure out what was wrong with my daughter. Wow. So, and my Lyme doctor did do some tests for her. We tested outside of LabCorp because LabCorp tests kept coming back negative, and we finally found that she had some positive bands that were indicative of Lyme. So we began treatment for her, and based on her symptoms, she thought maybe she also had Bartonella. And later It took me 3 years to get my Lyme doctor to test us for Babesia. I just in my gut knew we had it. She finally— she said that we didn't have the classic symptoms for it, and I felt that we did. And then she finally tested us, and we all tested for Duncani wah-1, which is, we all know, West Coast Babesia, right? But we're on the East Coast, and we all had it. And, you know, from there we started the malaria treatment for that. But the medication made my third daughter— my PANS daughter, I call her PANS. No one would tell me she had PANS. Everyone said that's not a thing. PANDAS is not a thing. This was, you know, years ago. And so I just kind of did as much research as I could. The medication was making her so much worse. It was just— I just cannot even describe the state of my home. And that's kind of— when I listen to your, your podcast, it really hit home when you're talking about your daughter and just how difficult it is to live with a child that is just out of control. And, and that just really, you know, all those feelings and emotions came back up inside of me, you know, based on, you know, memories that I've suppressed. Like, I don't want to remember those memories. Those are hard, hard times. Yeah, but, but I just cried listening to you, and I was like, oh, I know those feelings. But we ended up leaving the antibiotic realm because it was making her so much worse, and my doctor said there was nothing more she could do for my daughter because she wasn't improving and she was getting worse, and she didn't know what to do. And a lady that I had met recommended a doctor who treats using homeopathy, which I had no no history of using. I didn't know anything about it, and I was actually hesitant to even go that direction because we had used herbs and antibiotics and supplements and diet. But the homeopathy is what got her better. Between homeopathy, moving— so something in our home was keeping us from, from, you know, progressing.

And you think it was mold?

It was not mold. Our doctor believed that there was there was some type of a toxic water source under where our house was. So he does energetic testing. I don't understand all of that, but, you know, when we did move, we noticed a dramatic improvement in how quickly we were able to heal.

And did you guys move specifically so that you could feel better? Like, is that why you left your house?

No, I didn't believe them. And so we, we were in a tiny little home with 4 kids, and we, we finally were able to because we were looking to move and then we all got sick. And you know, everything's out of pocket with Lyme disease. There's just no way to do anything in life, you know, when you're shelling out thousands of dollars just for your health. Yeah, but we were finally able to, you know, find a home that we could move to, and it helped everybody get better quicker. Now, there was mold in this house, and that set me back quite a bit, but not everybody else. Wow. So yeah, we got that remediated and then I started to feel better.

So I wanna go back to something you said earlier when you were going basically from doctor to doctor. How much strength did it take for you to continue saying, this is not because I have 4 kids, this is not, I'm not suffering and I'm because of my lifestyle choices. Mm-hmm. I'm suffering because something is deeply wrong.

Yeah, I think because I had always been so healthy and I did not rely on doctors that I knew something was wrong with me. And while those doctors may see people who love to go to doctors, I did not. You know, anyone really—

look, I, I mean, that is—

I— ludicrous. I know, but that's how they treat you, like you're just here to get medication. And that's what they would do. They would pull out their script to write me a prescription and I would say no. I want to know what's wrong with me. I don't want a prescription. You know, I don't tolerate medications well. I did not want to— I didn't want to take their medicine. I wanted them to tell me what was wrong with me. But I quickly learned that each specialist has a box and they view your symptoms inside that box and that's how they treat you. And you might not fit that box, but they don't look outside of the box. And so it was very frustrating for me.

Wow. Even just having to beg for 3 years to get a test done. Yeah, that is insane.

Yep. And I, I didn't understand it because my insurance would cover it. It wasn't like—

oh my gosh.

And even, even if I had to pay for it at that time, LabCorp was testing for Babesia. I notice now they don't have codes on their, on their website for it, but at that time they were testing for it and my insurance would pay for it. So I didn't understand why that was such a complicated issue. Like, why just— why not test us and just find out for sure?

Wow. Yeah, the amount of advocating that you have to do for yourself just not to feel like a crazy person— yeah, is immense.

Yeah, well, it's not just the advocating but the research. You know, here I was, very, very, very sick, and I'm having to advocate for myself and for my children and for my husband. And then I had to do all of this research with brain fog and trying to figure out, you know, is my doctor giving us the right treatment because we're not getting better? And, you know, what kind of supplements can we take to protect our liver and to, you know, just to counteract some of the things that even simple things like probiotics, you know, we're not being told to take. And so I just had to do an immense amount of research and advocacy for my family. And I, I look back now and I'm like, how in the world? Like, I don't even know because I was very, very sick. But I think this thing, something just rose up inside of me that I need to get my kids better. I need to be better for my kids to take care of them. And so I didn't have the luxury to just stay in bed and be sick. I had to get up every day and take care of them.

Yeah. And what, what part of the country are you guys in?

We're in Maryland. We're on the East Coast.

Oh, okay. Yeah. That's— you should be able to get adequate treatment there, right?

Yeah. Yeah. Well, this was 10, 13 years ago. This is 13 years ago now. Yeah. But still.

Yeah. So I think it's so interesting when you look back on your journey, when you're like, oh, I should have fired that doctor. Sooner, or, oh, I should have just gone around that doctor. And I look back on my journey and I remember going into the ER for pain, like felt like my pancreas was wanting to jump outta my body and for days on end. And I was on all my pain meds and, and other meds and going into the ER and taking my pain meds with me and saying, you can have these back. I am not here for more pain meds, but something is desperately wrong. And not on just one occasion, but multiple occasions, I could hear the doctor say, I am not going to go back and talk to her. Wow. Because I was in the box of something that they did not know how to deal with. Or they just tell you, yep, go get on the list to see a specialist. I'm like, I'm already on those lists. I'm dying. Something is severe. Severely wrong. I can't walk, I'm having seizures. How could this possibly be all in my head, right?

Yeah, yeah, immense. It's really difficult. And, you know, then you start to think, am I crazy? You know, is, is it really? Because back then you didn't see a lot of entire families who were sick with Lyme. So I, I had to deal with not just doctors thinking I was trying to get attention for my kids or for myself, But I also had at least one person that suggested that maybe I should be careful because I might be labeled as a Munchausen mom, you know, making my kids sick, which was just absurd. You know, I don't want them to be sick. I, I prided myself on taking really good care of my family and making whole foods even back then, you know, and exercising and, and things like that. So there was no way. But it was just— it was really heartbreaking. Dealing with doctors and dealing with people.

Yeah, it's two different sides of the same, the same issue. So what are some of the mindsets that you adopted along the way, even in hindsight? Or you said something rose up in you and you had, you had to get out of bed. And I talked to so many moms who are just juggling immense amount of chaos and trying to keep people up on their feet Like, that's what my son Nathan, he has not been on his feet this year and that's not normal for him at all. And so just the, the juggle of it, but what were some of those mindsets or that you adopted?

At the time I, I, I probably couldn't have identified anything like that, but looking back, you know, um, it was, it was kind of like a survival thing, I guess. I just knew that I didn't want my children. To suffer, and I didn't want to suffer from myself. And, and I just— I'm a Type A person, so I needed to fix it, you know. I needed to get us better. And I'm not the type— for me, I'm the type of person, if I'm in pain or I'm suffering, I don't like to be still. I want to keep moving so I don't think about it. Yeah. But this really— this, this made me stop in my tracks. And my husband knew something was wrong with me because I couldn't walk and I couldn't think straight, and I was in I was in so much pain, you know, I would slide down the stairs to the living room with my slippers and robe, and I would kind of crawl to the, the couch and stay there and watch my kids. You know, they helped out a lot when they— before they had gotten really sick. But, you know, so when I was sick, I just knew I had to get up and take care of my kids. But then when they got sick, it was just— I don't know if it's a mother instinct. I don't know. I don't even know if I can identify It was just a passion inside of me that I wanted to see them healthy. And at some point it became like I needed to prove these doctors wrong, you know, there is something really wrong with me, right? You know, so, wow, I don't know.

So let's talk about having a kid with PANS.

Hmm, yeah, I would not wish that on my worst enemy. That, that rocked our world. You know, at first we weren't really sure what was going on. My husband had an appendicitis appendicitis attack and he had to have his appendix out. And right after that, she started panicking thinking that she was also having an appendicitis attack. And so I took her to the doctor every couple of days and the doctor would say— finally said that I think about the 3rd or 4th time she said, "Can you jump on one foot?" And so my daughter jumped on a foot and she says, "Well, if you can jump on one foot, you're not having an appendicitis attack." And so We go home and next thing I know she's jumping through the house nonstop. Like, she— that was the way she started to walk. And from there we would watch her at dinnertime and she would fill her cheeks up like a chipmunk with air, and then she would do these weird things with her hands. And then she started having facial tics, and then I noticed OCD behavior. And I— and the hopping was definitely an OCD behavior, but it just— it increased in severity over time. And then she began to have rage and panic attacks, and she would be so defiant against us about every little thing. She, she just really kind of ruled our home for a long time. I mean, she was 7 when this all started. And didn't start getting better until 13, 14. And, you know, puberty makes it like 100 times worse. So it just— it became this thing where I, I had to brace myself. Basically, in the morning, I would be woken up by her screaming.

Oh, God. I know exactly what you're saying.

Yeah. She would scream bloody murder like, like she was dying. And I would go to her room in a panic. And I— and I did this every day. And then she would need to go to the bathroom, so I would have to help her out of bed, but it was with an OCD fight. So I'm helping her up and then she's pushing herself back on the bed. "I can't get up, someone's gonna die." And then I'd help her up and then she'd throw herself back on the bed and it was this way. And I would have to talk her down from the ledge, you know, and say, "It's okay, no one's gonna die, everything's fine." And then eventually get her to the bathroom. And then it was this whole thing with the light switch and it went on like this all day long. So she could not function without this OCD battle, and it was me helping her and her fighting against me all day, all night. And at nighttime, I would wake up to see her standing over my bed, and she was in a, you know, a panic. And especially if there was a storm, it was terrible. If I tried to leave the house without her, she would physically stop me. And grab me as tight as she could. I mean, I had bruises on my arms because she would just grab me so tight, and you could see the terror in her eyes because she thought if I left her that I was going to die and I wasn't going to come back. So she was just terrified. And so she would fight me, like physically fight me, to not allow me to leave her. And so I took her almost everywhere with me, but there were times I needed to to get away. And I literally would have to push her away from me in order to get out the door so I could have, you know, 5 or 10 minutes out of the house. And it was heartbreaking and frustrating and exhausting and all the things. It was just the worst time of our lives. She couldn't do school. She was non-functioning. And I would allow her to watch TV and movies just so I could have a break, because if she was— if she was focused on something else, then she wasn't focused on me. I couldn't get her to do school. You know, we could go out as a family with her and she would be okay, but sometimes she would start to have anxiety and it would always end up on my arm with her fingers around my arm, you know, like she needed to go or something. Yeah, that was— that's a time that I don't think about very often anymore because you know, I don't like to go back there.

Yeah.

How did your other kids handle that dynamic in your house? Because, you know, if— for those of you listening, our daughter Daya, who is 12, and we talked about her in prior episodes, um, is not living with us at the moment, um, and Aaron's sister has custody of her. But you said, um, she ruled your home. And that is how we have lived for 10 years. And, um, it— we've paid a tremendous cost on a lot of levels, and our kids have, and, and our other relationships have, because we couldn't go out and do stuff, or we couldn't have new people come into our home. There were so many years where her behavior has impacted every aspect of our life. That's why we are working from home. It's it's a number of things. But how did your other kids react to it? And, and then how did that impact your relationship with your husband?

Mm-hmm. My other children, my two daughters who are older than her, were very frustrated with her, of course. And they would get very angry, and they didn't understand. You know, when they were younger, they used to think that we just always focused on her, like all of our attention was on our third daughter. And, and so they would get frustrated and angry about that. At the same time, they were very sick with Lyme disease and Bartonella and Babesia. And so I had to, you know, that's where the TV would help me— put her in front of the television, and that way I could help to take care of the other two. But I can't tell you that I gave them as much attention as they probably needed, and I did get frustrated that they were always complaining about something hurting, and I was just like, another thing I have to deal with, you know. And it wasn't— it wasn't directed at their being the problem. It was more like, I don't think I can handle another thing. It was more of that. And, and so, you know, there were times when they got along, but then there were a lot of times when my other girls just couldn't handle the screaming, they couldn't handle the battles. And, you know, and they reacted in their own ways, you know, and they weren't good. And even to this day, you know, there's things that need to be healed. So I did have all of them in, you know, therapy at one point, and I think that that helped a lot. But, you know, there's still work that needs to be done in the relationships.

Yeah. Huh. I grew up with a brother who was mentally handicapped and, um, he had seizure disorders. He had gotten meningitis as a baby and it settled in his brain, so he had permanent brain damage. And he was physically— as when he hit puberty, he, he was just hard to be around because he would yell and scream and say things and, um, walk around naked if you— you know, he would just do weird things. And, um, it's interesting because you don't right? You don't— none of us parents want that element for our other kids to have to deal with, where it's an all-consuming— one kid is consuming vast amounts of time, energy, and money over and over again. But when you have someone who is out of control, you're not trying to micromanage them and control them. You just have to keep them at bay so you can engage with the other kids. And right, I always would have to try to correct, um, these like emotional bombs that were coming out of our daughter's mouth. Because not because I wanted to keep fighting and battling with her, but I had other kids in the house. And so I had to be like, this is not a normal way to communicate. Hey, right? The way you said that, you're manipulating everyone. Or you just blamed him for something, or you just accused him of something. Is that what you meant to do? Like, why are you saying that? We're trying to play cards. Why are you doing this? But it was so immense. That's all I ever did was try to negate the chaos that was coming.

Right. And I think that's important. That's something that I did as well, because the other kids need to know that her behavior is not okay. Yeah, that's a big part of it. And then also identifying— having her identify the fact that what she's doing is not okay. So how can we do that differently? You know, and, and talking her through that when she's not, you know, freaking out. So there were a lot of different tactics that I used for the behavioral issues because, like, my younger son, that's all he saw and that's all he knew. So he would try to imitate that and I would have to say no, right? This is not normal behavior. This is not okay. This is not how we behave. And, you know, and then with my older girls, just trying to help them to understand that something's going on in her brain that's not normal, and we need to love her, and we need to be patient with her. And if you can't and you feel like you just can't deal with it, then go somewhere quiet in the house or go outside for a walk. But, you know, I, I tried to explain to them what was going on once I learned, because before I knew what was going on, I had no idea. You know, I'm just like, she's out of control. But once I started learning about what was really going on with her, and we realized it wasn't her fault, you know. And we— and I had to keep telling my daughter that too, because she felt like she— she would call herself a freak. She's like, I'm just a freak, and I'm not, you know, I don't deserve to be around anybody. And, you know, she would just go on. And so I had to feed into her and tell her how much we loved her, even though she was going through this, that it wasn't her fault, that, you know, we would work through it. And that we would get through it and I was doing everything I could to help her. You know, so I had to show her an immense amount of love and to feed into her self-esteem because she felt horrible and she lost all her friends, you know, and she was lonely and she was scared too. So she would cry after her episodes because she knew that they were wrong, but she didn't know how to change it and she couldn't. You know, she had this infection going on in her brain. There was no way she could have changed it on her own.

Yeah, and that's what I hear from so many parents is the rage aspect just destroys, and the OCD, and the fighting the very people who are trying to help you. Yeah, that's huge.

And reminding her, you know, we're on your side, we're here to help you, you know, we love you, we want to help you. But my husband and I, we, we quickly began to learn how to play tag team.

Oh, I love that you said that. Lay it on me. I know exactly what you're saying.

You know, you're dealing with a child who's raging and just completely out of control, and you can only maintain your composure for so long before it's like, you know, I just can't handle this anymore. And so if I noticed that my husband was interacting with her and he was starting to lose patience or starting to become a little bit too stern with her, then I would go over and just grab his arm and say, "I'll take over from here," you know? And at first he didn't like that, but then he realized it was probably pretty smart because that way he didn't lose control. And then he would do the same thing for me. And if he saw that I was out of control, you know, I said things that I didn't mean, but I was frustrated, like I didn't know how to, to interact with her and to get her to do what she needed to do or to stop doing something that was harmful to someone else or to herself, you know. And so it was, it was a really hard thing, but we did learn how to support each other in that way. Thankfully, you know, these things can tear apart a marriage. I mean, they really can, and they do every day. Yeah. And so it's so important to remember that we're on the same team and And that, you know, this that's happening in our lives is not— it wasn't anyone's fault. It just happened and we have to figure out how to handle it on a daily basis and just continue to try to love each other.

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How to handle it on a daily basis and just continue to try to love each other. And love our children and kind of create— we tried so hard to create some kind of normalcy in our home, you know, for the family, but it was hard and it would almost always end up in some kind of a, you know, panic attack or something, you know. But we tried and hopefully they have some good memories. You know, my girls— it's so hard. Yeah, it's hard. The girls are all adults now and doing very well. And then my son is 12 and he's doing very well. So, you know, looking at us, I don't think that people would know that we went through all of this, but I know that deep down there's still things that are going on that we all probably have to deal with, you know, based, you know, just from what we went through. Because there's like this— I'm just learning about this medical PTSD and I'm thinking, yeah, like, I get it. Yeah, I totally get it. You know, not to throw that word around, that term around lightly, but it is a thing. And it's, it's very difficult. And I think it impacts us more than we want to believe. Yeah.

Oh, for sure. Mm-hmm. So many times, you know, when you're sick, and you have kids who are sick, and you don't have— and all your money is going into treatments, not for a few months, not for a few, like years, It's insane. I'm like, yes, I swallow the equivalent of a mortgage every month. Like, but I remember at times just finally getting to a place where we could go do something fun and like, okay, we're going to the movies, which we don't normally do. And the chaos that would ensue from one kid just— I'm like, how is it possible that it's this hard to try to have fun? Why does it take a day of prep and 2 hours of talking her down when we want to go to the movies as a family. Like, why are we having this conversation?

Yeah, it's emotionally draining. It's just— I, I don't think I've ever experienced anything like that in my life, and I hope I never do, you know. But I, I talk with other moms who are going through it, and my heart goes out to them, and You know, what can you do? It would be so nice if there was relief, you know, if there was some way that, you know, it's— you can't leave your child who's like that with anyone. And you don't get a break, you know, it's just really exhausting.

Yeah, you're right. You can't leave them with other people. That was the case for us for years, years and years. We could not get a babysitter. There is no one who could handle it.

Right. Yeah, and it would be a frightening thought as a mom. Yeah, to leave someone. Yeah.

Let's talk about being a Lyme mom and what that means.

Well, you know, that means two different things. We talked about that earlier. Being a Lyme mom— I was a sick mom with Lyme, so I'm a— I consider myself a Lyme mom. And then a Lyme mom can be someone who is taking care of children with Lyme. And I know a lot of women are in both of those positions now. It just seems to be very prevalent, and that is, you know, that's hard. Like I talked about before, you are trying to take care of yourself and you're trying to heal, but yet you're spending all of your energy and emotional time trying to get your kids better. And for me, that meant I didn't heal how I should, how I should have, or how I could have if I weren't, you know, putting all that energy toward taking care of my kids. So they healed, and then I had a couple of years where I had to really focus on myself, and I felt like I could because now I was free, because now they were better. And that doesn't always happen, you know, for moms. And thankfully it did for us because I don't think I could have handled it anymore. It was just, it was exhausting. But I'm still dealing with health issues. I'm still— still peeling back those layers. And I had to have these crazy surgeries last year. I had diverticulitis that didn't get diagnosed properly and my colon ruptured. And, you know, here we go again in the ER where they don't handle the situation correctly. And I ended up having to have two major surgeries, one of them that saved my life. So that set me back with my health. So now I'm dealing with all these things, you know, like, and I'm wondering, did my Lyme come back or is this just normal trying to recover from two surgeries? Or, you know, so I'm kind of in that place right now with my health.

Yeah. Hmm. So we've already talked about a lot of the choices that you've made. You said homeopathy became a big, a big part of your family's healing. What were some of those other choices?

So diet and nutrition, super big. You know, when my, when my PANS girl finally got to the age where she took responsibility for herself, she went on the strictest diet, and she and all of my girls began to exercise in their late teen years, and they exercised rigorously. Like, they put together their own workout routines. They began to do weightlifting. They exercised every single day, and I noticed that they regained their strength so much more quickly, and their symptoms just seemed to kind of disappear. And I didn't exercise right away because I had a hard time walking, and I'm like, what am I going to do? You know, how am I going to exercise? But finally, I did start, you know, looking up on YouTube chair exercises, and yoga and just things that I could do without walking. And I noticed that— and this was, this was before my surgeries last year— I got probably in the best shape I had been in 10 years, and I was feeling great. And then I started walking because then my legs, you know, started feeling better, and I was walking a couple miles a day. And then I had the surgery, and that set me back. So I'm back at the beginning now. But the exercise is huge. It was, it was very, very helpful, and I watch my girls, they continue to make that, you know, a part of their daily life. And I think that they might have to always do that in order, you know, to stay at their best. Yeah. But they love it. They really enjoy it. And I think that's important, you know, to find something that you enjoy doing. But I tell everybody, you know, if you're not exercising, start with physical therapy, you know, start with something too, because my muscles began to atrophy. I had so much cellulite. I wasn't really overweight, but I had a lot of toxins in my body that just weren't moving. And I found out later I had MTHFR, which makes it— the exercise is really important to get the lymphatics moving and everything. But it does, it makes a difference. Yeah. But we've used other things, you know, we've done the infrared sauna and the lymphatic massages, and, you know, we've done different therapies. Now, with 6 of us, we couldn't do a lot of different things, right, you know, and we— and I couldn't travel to different states to see different doctors. So I feel like we treat treated Lyme on a budget, if there's any such thing, even though we still spent a boatload of money. But I look at what other people are doing, I'm like, yeah, we never did that. Yeah.

So, yeah, yeah. So living is the outcome, right? Hopefully we're all alive, still fighting. Yeah, hopefully, um, done being survivors, or even mentally done being survivors, even if our bodies are still trapped in that mode. So I want to talk about your new podcast, Abounding in Hope with Lyme. Tell me, tell me where that came from and why you chose to give that amount of energy.

Okay, well, my blog is Abounding in Hope with Lyme, and I started that in 2015 because my sister was very insistent that I put down all of the things I've learned, you know, on a blog, because she is in an area that's kind of a hotspot for Lyme time, and she just was like, "I need to send all these people to you. Just write it all down so that I can send them there." So then I started my blog, and then this past year, I just felt really passionate about taking it to another platform, so I started Abounding in Hope Talks. That's my podcast.

Oh yeah, Abounding in Hope Talks.

Yeah. Yeah. And so I started that because there are a lot of people who have cognitive issues and they don't want to sit down and read a blog, you know, they'd rather listen to a podcast. And I personally love listening to podcasts. So I just felt, you know, I'll try it and see if it works out. So I'm on my 15th episode coming up, and so far I'm enjoying it. And yeah, just trying to, to get the word out and on different platforms so that people can, can be encouraged. And also, to me, if you don't have hope that you're going to get better at some point, you know, you won't heal as well. Because if, if you can't see the light at the end of the tunnel, you might give up. And I personally don't want to see anyone give up. I want them to have that hope that they can get better, that they can feel better. And I want to be that source of encouragement because I've been there and I know how hard it is. And when I was there, the only thing I had available to me was like the, the Yahoo Lyme forums that were secret, and everyone there was just like Debbie Downer. Like, no one had any positive things to say. No one was getting better. And basically they just said, you're gonna have it for the rest of your life. And, and that's depressing, you know. And, and then I would just— I would feel like, well, why bother? So I don't want people to feel that way. I want them to have hope that there are things that they can do and that they can get better.

Yeah, it's interesting. The— I've talked about this, but when you are part of a community that's founded on trauma trauma. We all bring our trauma back to the table, right? So whether it's a kid who you're fighting just to help them get up to go use the bathroom, you're in this weird dysfunctional fight that so many people don't see. And it's hard in the Facebook groups and stuff. I go in with very calculated time because it is, it is hard to filter through all of that and there is really good information and Facebook groups were a lifeline for me when I knew absolutely nothing. But, but it's a community. I don't know.

It's a hard community. It's very hard. And I think, I think having a time commitment saying I'm going to go on there for 30 minutes with a purpose is really helpful. Yeah. But if you sit there and read every single person's story, you can really start to absorb that, and that's such a hard thing to carry when you're trying to carry your own story. Do you know what I mean? Like, you're trying to get better, you've got all of this hurt and this heartache and this loss, and you're lonely, and you've just— your whole world is not what you wanted it to be. And then you start to read other people's heartbreaking stories. For me, it was so emotional, and I couldn't handle it. You know, I would go in there, and then I would just it would just weigh on me for weeks. And so I knew that I really had to be careful with those types of groups. So now I try to pop in. I still can't read a lot of the stories. I will if they email me, but I will just pop in just to provide a source of encouragement to others because they need to have a balance of the heartbreaking stories and the encouragement. You know, we're there to support each other. But at the same time, you can't take on someone else's burden when you're trying to carry your own.

Yeah. Huh. Yeah, it's immense. It's immense. What do you think as far as people? Do you think people are healing and getting better?

I see people, I talk to people who are getting better. I don't see as many people healing completely, and I don't know if— I don't think it's because they're not healing. I think it's because they take off and go live their life. I really do. And I think that's what happened in the Lyme— in the Lyme forums that I was in when I was sick. I think that those people that got better were just like, yay, I'm free, I can go live my life. Yeah. And they didn't want to stay there. They didn't want to think about it anymore. They just wanted to move on. And I really think that that still happens a lot.

Yeah. Yeah. I try to tell people, I'm like, people are healing in a wide variety of ways, but you cannot sum it up for someone. That's what people are so desperately looking for. Like, oh, how do I get better? Right.

You can't answer that. No. Everyone's so completely different. Even in my family of 6, we all responded to every single thing— supplements, food, everything. We responded completely differently. We each healed at our own different rates. You know, we had similar symptoms, but then we had different symptoms. So every single person is completely different. And I can't say, hey, go visit my doctor, even though I love him to pieces and I want to hug him every time I see him because he gave my PANS daughter her life back. But I can't say he's going to do that for every single person because I don't know where do they live. Are they living in a home that's making them sick? Are they, you know, do they have all these other issues that they need to deal with? You know, so it's just— it's more complicated than there's this magic pill, come take it.

Yeah, yeah, it sure is. Yeah. Wow. Well, all right, lay it on us. Where are you getting your inspiration from these days?

Maybe your own podcast, huh? You know, ultimately my inspiration comes from the Lord. I am a Christian, and I try to just I just, you know, stay in Scripture and I get encouraged and uplifted by that. But I listen to other podcasts, like I found yours, and as much as it broke my heart to hear what you were going through, it also— the other podcasts are very encouraging to me as well, to see how people handle these circumstances and maybe to just hear something new about a treatment that maybe I've never heard of before. But I, I do listen to a lot of faith-based podcasts because hearing someone else's story, whether it's Lyme disease or whether it's another circumstance that they've gone through, and seeing how they've risen above it, seeing how that they've— they fought to get to the other side, to me that's encouraging and that keeps me going. And when I was really sick, that kept me going because I knew if they can do it, I can do it too. You know, I, I'm going to keep fighting and just keep, keep doing what I need to do to get better.

Awesome.

Yeah.

Thank you so much for your time. Thank you. Thank you for being here.

It was so nice to meet you.

And thank you for sharing hope. Like, I think it's in this community, it's one of the biggest things because like we've said, Everyone is different. The only thing that we all truly have in common is our mindsets, in the sense of being able to use our mindsets and looking forward to the future of, okay, I'm in this atrociously hard spot with lots of people depending on me who are all broken and sick, and yet it does get better. Yeah, it just takes a long time.

It does. And really, you have to take every single day and find some type of joy in every day. You have to slow down and look at— look for things that you can find joy in. For me, it would be being in nature, even though that's where all my problems started. I love to be outside. I love to hear the birds. I love to garden, you know. So finding something that you love to do, even if you're too sick to do it, you know, find joy in every day. If, if your child tells a joke, you know, really absorb that and just enjoy that. You know, if you're with your family and it is a peaceful moment, just absorb that and enjoy that. Just find a way to enjoy all the little things in life, and that will actually help you along the way so that you won't feel so burdened by all the bad things that are happening too.

Hmm.

I love that. Well said.

Thanks. All right, thanks for being here, Tricia. Thank you. Hi guys, I want to let you know about a book I wrote called Little Bite, Big Trouble, and I'm going to read a review that recently came in. This is from Carolyn, and she says Thank you so much for writing your book. It has become the means by which I have explained Lyme to my 4-year-olds. They ask for it to be read as a bedtime story over and over again and love that the mama birdie does yoga and juicing like their mommy. I can't thank you enough for writing this book. It has helped my family so much. You can find it today at amazon.com, Little Bite, Big Trouble. Disease is contrary to life. Therefore, wherever disease exists, life must also fight to exist.

Good job fighting, Lyme fighters! Keep it up. We'll see you next time. LymeVoice contains general information about medical conditions and treatments. The information is not advice and should not be treated as such.

Okay, Lincoln?

Okay. The medical information on LionVoice is provided as is without any representations, warranties, expressed or implied. Okay? Okay. LionVoice makes no representations or warranties in relation to the medical information on this podcast. You must not rely on the information on this podcast as an alternative to medical advice from your doctor or other professional healthcare provider. If you have any specific questions about your medical matter, you should consult your doctor, or other professional healthcare provider. And for you, you consult your parents, okay?

Okay.

If you think you may be suffering from any medical condition, you should seek immediate medical attention. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this podcast. Got it, Lincoln? Got it.