EP 15 Lyme Disease, Doubt... And the Journey Back to God - Cari Lyons

After a decade of gathering women together for prayer, we are inspired to bring our words of encouragement to you. This is iRefresh. Welcome to iRefresh, where we empower ordinary women to do extraordinary things through the power of prayer and encouragement. I have today with me my dear friend, Carrie Lyons. Hi, nice to be here. Good to have you here. Okay, so we have a really long history. We go back to our days of college. Actually, I was already graduated from college. You were my dorm director. Exactly, so yes. So, I will say how many years, and it's a good thing. And we've done life together because our husbands work together. Yes. Actually, now I'm thinking about it. Brandon worked out with my trainer and me. Tom, my wonderful trainer. I just found those pictures the other day. No way. Yes. Oh my goodness. Okay, so yeah. So, and then kids. She's got three kids. Three boys. Three boys. And your middle one's in between my two. Okay. Yeah, because... He's 21, so. Yeah, so Daniel will almost be 22, and then David's, I guess, oh wait a minute, right? And 20, oh that's really bad, so I put myself on the spot. Anyway, but we, and then, not that many years ago, I don't know how many years, I was trying to stop wearing sweats. I went through a phase where I wore sweatpants, every day for a good year. Everyone has a uniform. Yeah, and I color coordinated with my shoes though. I really did. But something happened where, I don't know what, I think, what was the conversation where we were talking about clothing or something? I knew I needed to change my ways probably a little bit. And I discovered you have a talent for putting things together. Yeah, I love to go in people's closets and come up with outfits. And so I think I jumped in at that chance. And boy did you. I lost so many clothes out of my closet. You still remind me sometimes of the things that you got rid of. Yeah, it was like trash bags full. It was, all those treasures were gone. So she probably needs to go through my closet again. But the beauty of it was just how she helped to, where I wasn't very good at it, I've learned now. as she became my stylist and helped. We had a lot of fun shopping. Yeah. And I hated shopping. Yeah. But she brought joy in the shopping. We basically restocked your closet is what I would call it. Yeah. But she was so, she's very talented in so many different ways. But that was a journey that we won't talk about today. I really wanted to talk about, with your permission, of what God has been doing in the last few years in your life. Yeah, because it was after we went through that together and we're in dressing rooms and closets together that I started feeling ill. And it basically started over 10 years ago. It's been over 10 years now. That long? Wow. And at first it was just, I felt like I got the flu a lot. And it felt like a monthly thing. I would come down with something. As a mom of three boys, I thought, well, I just got sick from one of my kids again, and I would blow it off. But then that developed into having some neurological symptoms and having some brain fog and then developing body-wide pain. And that's when, when your body is in pain, that's when it's telling you, you need to figure this out, I'm wanting attention. So at that point, I just started my search in the medical community, going from doctor to doctor, and I started off traditional with my internal medicine doctor. And I said, something's wrong with me, I keep getting sick. I'd had about four or five weeks of just solid flu-like sinus infection type symptoms. and he did not take me seriously. And he said, we'll call this a viral syndrome, and believe it or not... Really? I've never heard that. Yeah, it's just a made-up term, a blanket term. And he saw that I was stressed and anxious because I was very sick and I was worried, and he gave me anxiety medicine and sent me on my way. So I was just another middle-aged mom who had a mystery illness who didn't get help. So you just got antidepressant? I got an anxiety medicine, which I didn't take because I knew. I sat there after he gave it to me and I said, I know I'm sick. It's from head to toe. I know there's one root cause and you're not helping me. So I moved on to another doctor. So you went, you said multiple doctors. Oh, I would say 10 to 20. Yeah. Wow. And so you had to look outside. I was going to say you had to look outside. So how did you come to conclude what you had? Or how long did it take? It took a couple years, and I did get a couple tentative diagnoses of chronic fatigue and fibromyalgia. And personally inside of me, because of the neurological and muscle involvement, I was scared that I had MS, but I never admitted that to anybody. Wow. Because it scared me so bad. Right. So what ended up happening is I, thought, I'm a nurse, I had worked as a critical care nurse, I have some medical knowledge, I'm going to try to figure this out, God can you help me? So I went on Dr. Google and I would spend all day online in different forums looking for symptoms that were similar to mine. And I would talk to people that I knew that were having health issues, what have you checked out, what did you find out, and Lyme kept popping up. So I actually went to a doctor and said, I think I have Lyme and she tested me, but did the wrong test. And she said, you don't have it. So I actually moved on for a year to other things. Oh, wow. And it was after that, that I was kind of brought back around and I figured out what test was the best. And I actually asked a doctor, can you order this for me? I handed the forms to the doctor. Okay. And she said, sure. And that's when I found out I was, I was actually CDC positive for Lyme, which is hard to come by for a test. So I really had chronic Lyme and had had it probably for years. I don't know how long. So you don't even know when you first would have had it? No, I mean... It must have been dormant originally? Yeah, I mean what can happen is you can get bit and you can think you have the flu and then it goes away and then gradually you can get sicker and sicker and I think that's what happened with me. I do remember a bite. I don't remember it being a tick bite. I thought it was a spider bite. Okay. And it didn't have the typical the look, a ring around it like a lime bite would. Right. But now I've seen pictures of atypical bites and I know that was it. And I don't remember when that was, unfortunately. Right, because being proactive, because I get concerned about that even with, like one of my sons does all the spiking and he goes camping, I'm like, I'm like wear the repellent, I don't care what chemicals I have to put on my body. I'm going to wear a repellent. I would say I'm not an outdoors person anymore just because of that. So when you finally, someone finally got to do the right test. Yeah, so I find, I have a diagnosis and I think this is it, I am on my way to health, I just have to figure out how to get over this, surely there is a set protocol for Lyme disease. There's not. Lyme disease. And why not? It affects everybody differently. It works kind of like an autoimmune condition. It affects your immune system. It affects every system of your body. Every system. Head to toe, everything. And I realized that there's not a set protocol. Doctors haven't quite figured out how to heal people. There's not really a cure. You just have to find your way back to health. And you kind of have to support your body systems while you fight the infection, and that's a hard balance to do. So if you get infection, so you have to be ultra careful then. So this is like a body-wide infection from the tick. It's a bacteria, and it's not usually just one infection because ticks carry multiple infections when they bite you. So it's Lyme disease with what they say co-infections, meaning other things you can have, Babesia and Bartonella and things like that. Okay, so it's kind of a wide range and those tests are very expensive to get so normally doctors just base it on The symptoms that you have deciding what other infections you have along with the Lyme So you really have to push and be your own advocate. Yes. I don't know what I would have done if I didn't have the medical knowledge. That's what I was going to say. I mean, you were fortunate to have a basis to work off of. But I'm not sure how other people that, you know, may not know like where to go to research. Yeah. And there's no doctors in Tulsa really that treat Lyme. Really? I mean, you could go to an infectious disease doctor, but you wouldn't get a lot of help. So I really had to search for someone that would guide me through this process. So did you go outside of? Yeah, I ended up seeing a nurse practitioner in Oklahoma City who had had Lyme herself. Okay. So having that experience really helped me because she knew what I was going through. Wow. I mean, there was hope then. Yeah. Somebody got you and they're like, there is something wrong. Yes. And they knew what to do. Well, and to finally have someone to say, yeah, you have Lyme. Like, they believed me. I felt so rejected by the medical community. And I felt like I wasn't taken seriously. And she was the first one that said, yeah, this is what you have. And we're going to do what we can to treat it. Okay, so like how long ago was it then you got that help? Five or six years, yeah. So then, so what has life been like? Not just physical of just getting through the day, but what's it been like on dealing with, you have three boys and you, Yeah. So how did you do life as a mother and a wife? It was tough. There were a lot of ups and downs because with any chronic illness, you have times where you feel good and you have times where you feel terrible. And with Lyme, it can change day to day. So there's no control and I'm a big control freak. So I finally realized I don't have control of my body and therefore control of my day or my life. And so what happens is you have a good patch and you get hope. I'm getting better, I'm going to get my life back. And then you'll have a downturn or a flare-up of your symptoms and the disappointment comes in. And the more you go up and down and up and down, it becomes wider and you get great. And then you have a very big downturn and the disappointment just really ate away at me. And it ate away at my faith, to be honest with you. But yeah, but that's the thing. You're very authentic when we have talked is, those places where you're in between and you're searching. Yes. And then there's no rhyme or reason of why one day was different than another day. You did the same routine, ate the same thing, did the healthy. I know you are going through the gluten-free options, trying everything, because I do the gluten-free. But even when you do one thing, it's not a cure-all. No. And I think what ended up happening is I had such a downturn that I ended up basically bedridden. And a lot of people didn't know that because I'm a great actor. And I would fake my way through the day. But what would happen is I'd wake up and I'd get my kids off to school and I'd come home and I'd go to bed. And then I would get up to pick them up from school and go back to bed. And then I would get up to make dinner and spend the evening watching TV in bed, and then the day would start all over again. So, I mean, my whole main goal was I have to take care of my family. But beyond that, you know, laundry, dishes, food. That was it. So it became very lonely, very isolating. And I started to probably even isolate myself from the Lord because I felt like He wasn't there for me. Wow. I was really disappointed. Yeah. I mean, when you have that place where you're like, you don't know where your hope is. Exactly. And that's a very low point. Yes. So when you, I mean, I'm sure, because you talk about those waves, that still is a possibility of the days are up and down. But I think the more disappointment you have, the more you lose hope and the more you're afraid to hope. Because if I get my hopes up, then what if it happens again? So that even goes in with treatment because then you think, well, do I really want to do that treatment? What if it doesn't work? I can't handle another treatment not working. Right. You know. Yeah. The possibility is great to look ahead of you, but on the other side of it, you don't know. Yeah. You're always taking a chance. Right. Yeah. I think even at that, I know even when my mother being ill a lot of times too, is how people, when they know anything about what's going on in your life, how did they react or respond to you when they finally maybe realized, boy, she's not doing well? You know, because I was an actor in public, a lot of people didn't know how bad it was. And then at times I would just break down and then I would be embarrassed. Because I would cry in front of people and they would be like, what's wrong? And then you have to explain. And then so then you try not to get in situations like that because it's embarrassing. Because with chronic illness, there's a lot of shame that goes with it. Because with me, I thought, why can't I get better? I see this other girl who had Lyme better after a year or this one after six months. What's wrong with me that I can't get better? But that comparison is such an attack that the enemy uses against us. And when we start comparing ourselves in that capacity, we miss out what God may be wanting to do for us, is to have that community to help link arms with you. But even though I think you and I have talked about it, even at that, the people that should have been the closest that you struggle to that community you should have had, it was difficult even at that. Yeah, when you don't feel well, you don't want to be around people. And that's when you need people. So it's kind of a catch-22. So I felt very isolated. And I will say some of that was on me. I did isolate myself. But I also realized that people don't know what to do with the chronically ill. If you have cancer, they're familiar with that disease. So they know what to do with that. But when you have some kind of mystery illness, and it goes on for a long time, sometimes People get tired of it. And so then I started feeling like they're tired of me talking about being sick, so I'm just not going to say anything anymore. Wow. And it just became very isolating and I got really lonely and I dealt with a lot of rejection. And I just kind of have a, it's easy for me to feel rejected. That's just part of my personality. So that hit hard for me. And so I, a lot of friendships kind of went by the wayside. And that's probably another podcast. to be honest. Right, because one of the things that I remember when we got together one time, and it had been a while, and I thought when I sat there in your, you know, having coffee with you, I thought, wow, what have I missed? And I really went back home thinking like, Lord, I've experienced with my parents, both of them, And I'm like, wow, what, Lord, do we need to be more intentional if we know that there's anything wrong? Because my mother's with rheumatoid. You know, it's just a chronic, it's for life. There is no escaping it. And, you know, I think, too, is you have all the people wanting to believe for hope and health and healing and the miracle. But in the midst of it, however God chooses to heal us, we're going to be able to heal. is you still have to walk out the journey. And we don't know. I mean, just like you said, one person gets better after one year is you don't know how God chooses. And I think that that is having the belief to live for another day. Well, you have to find purpose in suffering, I think. And I really was suffering. I mean, I had the physical symptoms. And, you know, just the pain and the fatigue. I mean, climbing my stairs to get to my laundry room, I was short of breath and had to sit down before I could go and do laundry. Wow. You know, just so much pain that I would just lay still in my bed. In fact, Brandon and I laugh about it, my husband. Yeah. He would come in and make sure I was still breathing. That's how bad it got. Wow. So it's funny now, but at the time it was pretty serious. And then the emotional pain of the isolation, grieving a life lost because I was in this no man's land where I couldn't do anything. I couldn't move on in life. I was just trying to get better, just survive. You know, you're not thriving anymore. You're just surviving. And then, you know, the loss of friendships, the loss, the feeling rejected by the medical community, all that played into a part of this deep disappointment and grief and depression that I went through. And I got to a point where I decided this suffering can either destroy my faith, I can let that happen, because I'm angry with God and He's not hearing me and I'm calling out and I'm not hearing anything. or I can let it deepen my faith and I can really dig in and really decide what I believe. Right. You know, and get to know the character of God. So I think he was just waiting for me to open up those dark parts of my heart. Wow. I was hiding these emotions of anger and doubt because I was ashamed. Right. because you don't hear about that. Because the shame in your mind was because you had a disease? Because I couldn't get better and because I had doubt in God and I never had that before. That was new to me. You know, I've been a strong Christian for years and I'd done what I was supposed to do and things didn't work out. So it kind of flipped my faith upside down. Okay. Because what I had read and believed my whole life wasn't really happening in my life. And I felt like God was silent and he had forgotten me. So I just started, I'm a researcher, I read, I go online. I just started reading every book I could on suffering and doubt. And how does that fit in with our faith? And I found a really couple good ones that really helped me out. Like what did you find? One's called Room for Doubt. I can't remember the author, but I would highly recommend it. And one is by Tim Keller and it's called something about doubt and suffering. We'll find it. We'll post it. We'll find it. Something about pain and suffering and doubt. And so I began a journey back to the Lord and I got to know His character and His goodness and His faithfulness and the fact that He's trustworthy even in difficult circumstances. And He never changes. You know, my faith had changed, but He was always there. I just wasn't feeling it. So you... had that opportunity where God showed up or like were you aware of it? I think I finally surrendered to him and said okay whatever it is that I need to learn through this process can I hurry up and learn it? Let's get over this trial. Yeah like vacation time let's just get over learn quicker. But you know, that's really true. Like, that is our life, though. I mean, our life is full of trials. And it is, I mean, I think sometimes we think we see so many scriptures on joy. You're like, how is there possible joy in this? Yeah. I mean, I don't know. I think you have to compare scripture with scripture. That, you know, a joy of the Lord becomes our strength, but it's a different kind of joy. It's not the ha-ha-ha necessarily, but there is joy in knowing who He is in my life, where I'm at, in my circumstances, and trusting Him that every day I have to trust Him. I have to trust and get up and walk through your pain. And I'll say that I always wanted to avoid suffering in my life. I don't know why that was a big deal to me growing up. I would see people suffering. I say, man, I do not want that. And I would avoid the book of Job like it was on fire. You know, and it's now one of my favorite books of the Bible. So it's really funny how God works things out like that. Well, you know, it's funny because I think I recently said, I don't want to be Job's wife. I don't really want to be Job. I really don't want to be her. Or Job's friends because they were terrible. They were not nice either. I agree. We should still avoid that book. It's not good. It doesn't have a great ending. Well, it does have a good ending. It's just miserable throughout most of it. Yes. Yeah, but I think it's the beauty of learning, though, is learning suffering. physical but it was emotional. At the same time you were struggling in both realms. That had to be, like how was that with your family unit then with when you're going through that? Or did you stay so quiet? Your boys didn't know? Yeah, I kept a lot of this from my boys and I probably shouldn't have them, but I didn't want to have it affect their growing up years. You know, I didn't want them to feel any worse for me than they already did. And also, I felt bad as a parent that I couldn't be there for them at everything and in every circumstance. I would try to do that, but you know, you feel like a failure at times. So that was hard to deal with. And I found a couple friends that were there for me that I could really be vulnerable with, and I think that's important. I'm a big believer in the fact that we connect through brokenness. That's good. And that's part of my problem with Facebook and social media is that people put the good stuff of their lives on there and that's all we see. We don't see most of the time the struggles and the hardships. And that's really where you and I have connected. We talk about those tough things. And it's hard to be vulnerable with people but it always reaps wonderful rewards. I agree. That's one of the things I think if we knew on the other side of being vulnerable, I think that we're so blinded by the possibility of rejection. Yeah. You know, that we refrain from that potential, not knowing if they would reject, you know, even in their friendship of being willing. And that's one I think the heart, even with iRefresh, is, when I've had friends that I've known that I want to pray with them until, and you've come, and I want to keep praying until something happens. And that's my heart, and I think if we all knew that we want to go on the journey together, and so what? If it's a good day or a bad day, everyone has it, but your journey is a lot different. And to be able to have... people always around to be able to be that support. You know, when somebody can even text us or just in that encouraging moment, you know, when we feel that prompting, there's sometimes we feel a prompting to connect with someone who really need to know that that's the Holy Spirit tugging at us. And do it. Yeah. Yeah. Don't think it, do it. Yeah, yeah, exactly. Yeah, and that's where I am so grateful that Carrie, I've been learning and I continue to learn of the journey that you've been walking through that, you know, it's hard and it makes me sad and like part of me internally wants to rescue you, you know. I also know that, you know, Carrie's been monumental in my own personal life and going through my own little things, weird things of finding her friendship and acceptance. When I felt so inferior to you, And I think we, like I was painting a picture of how you were. Who knows that that was when you were hurting at that time? I'm not even sure. But in my mind's eye, I had a different viewpoint. I was so intimidated by you. And yet she made me feel so comfortable. And I think if we can break through our thought process and realize how much more we could have enjoyed and probably had more freedom and found so much more probably fulfillment in what God intended us to be with each other, I think... Yeah, I think we have to be vulnerable and that's really hard to take that first step. But being vulnerable and connecting is the only way that you get rid of the shame. Because then everything's out in the open and there's nothing to be ashamed of. They take the power away. Yeah. Yeah. And I think we do get inside of our heads sometimes and we assume someone's thinking something when they're not. It's really true. Yeah. What is something that you would want to tell our audience just to encourage them? I would say that even in the midst of difficult circumstances that God never leaves you. I would say that he'll never fail you, that he can be trusted through difficult things, and that there's hope because of that. I would say... that we have no control over life and its circumstances. And the only way that I get through the day now is to surrender every morning, okay God, whatever you have for me. Because we might think we have control, we really don't, he does. He's sovereign, we have to trust in his sovereignty and we have to know that If you go through a dark night of the soul, hopefully on the other side of that, there's a stronger and deeper relationship with the Lord. That's how I feel. I feel like He's in every marrow, every sinew of my body now. I trust in His character and I know He doesn't change. So because of that, I have hope. That's really powerful. And, you know, one of the things, too, I want us to, those of you may have known someone who's gone through something, one, a misdiagnosis, not even getting a diagnosis correctly. I mean, we could go on to another episode because my own son was written off here in town to give up baseball. and it wasn't over. I just, and it took a long time to find the right cure for what was going on in him. And yet, doing what you were doing, researching, researching, researching. I think that we need to realize it's hoping God, it's prayer, it's asking God for wisdom. Yes. I mean, I really think it's, even when we're going out there and you call it Dr. Google, is, is asking God lead me to where there are answers because there's a right connection that we're supposed to have for the answers that we need. I would really encourage you, definitely, I want you to connect with us. We really want to hear about how you may be going through a struggle. If it's like Lyme disease, let's continue the dialogue. I think it would be great to have Carrie come back on with us. and talk about even just that aspect of an undiagnosed and how she felt within the community, not to talk down about the community, the medical community, but we all have to work together. We can't just prescribe something when we really truly don't know what's going on. Let's work together and encourage the knowledge that will help to even just give normal answers for what she's going through and definitely trusting God in the midst. I think bar none, if it wasn't for the hope and help of God, I mean, no matter where we're going through in life, we need God to direct us, to strengthen us, encourage us, and then realize God actually brings people in our pathway. that really helps us to be able to press through and hope in God, you know, and be willing to be authentic with each other and vulnerable and realizing shame is powerless when we begin to communicate with each other. So I just want you to recognize with us that, you know, God is there for whatever you're walking through. He truly is a mighty God that... genuinely loves you. And I know that many of you are struggling, whether it's in a medical field or emotional, God is with you. And we want to hear from you. So be sure to subscribe to our podcast and connect with us. We truly want to hear what you have to say, where you're at. Maybe you haven't overcome it yet. Well, let us hear from you. We want to connect you even with Carrie and giving you inspiration, helping you press through. It's not just physical what you have to press through, but it's emotional, it's relationships that God wants you to be able to walk through. Even in suffering, God wants you to walk through that. Until then, go change your world.