What if Small Fiber-Neuropathy IS God's Plan A? With April Barcalow

Your life can be turned upside down by symptoms that never fit neatly into a chart, and that uncertainty can quietly reshape everything: your faith, your marriage, your work, and even how you walk into a grocery store. We talk with registered nurse, mom, and author April Barcalow about living with celiac disease, small fiber neuropathy, and long seasons of debilitating fatigue and weakness that still do not have a full explanation.

April gets painfully practical about what a gluten-free life really costs, including cross-contamination stress, social isolation around food, and the constant planning that healthy people never see. We also dig into pacing and chronic illness self-management, why scheduled rest is not selfish, and how accessibility choices at home and at work can reduce the severity of a crash. Her wheelchair stories are honest and surprisingly funny, but the takeaway is serious: mobility aids can create freedom, presence, and real family memories.

We also go deeper into Christian chronic illness questions: how do you trust God when tests stay negative, specialists “break up” with you, and healing does not come the way people promise? April shares the sentence she clings to, the ways suffering has formed her prayer life, and how chronic illness can feel like a third person in a marriage. If you’re a caregiver, a spouse, a medical professional, or someone with invisible illness who just wants to feel understood, this conversation offers language, perspective, and hope.

Subscribe, share this with someone who needs it, and leave a review so more listeners can find Christians with Chronic Illnesses. What part of your chronic illness story feels hardest to explain?

Follow April's Writing here: https://aprilbarcalow.com/

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Transcript

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Welcome And Meet April

L. A. Sprague 0:01

I'm your Jesus loving empathy host, Ellie Sprague. Welcome to Christians with Chronic Illnesses. April, thank you so much for being on the podcast. I really do appreciate it. So, everyone, today we are interviewing April Barcolo. And April, I think you're just a phenomenal woman. I mean, I know that we've only had one or two conversations, but I love hearing what you have to say about marriage. And it seems like the gentleness of Christ just pours out of you. So yeah, thanks for your humility and willingness to chat with us. Thank you. Yeah. So why don't you tell us a little bit about yourself?

SPEAKER_03 0:55

Yeah. So I'm April. I am a wife. I'm a mom to three teenagers. I'm a registered nurse. I've I've lived with chronic illness for almost 10 years now. I mean, I've gotten some answers along the way, some diagnoses, but still a lot of things that just aren't well explained by the diagnoses. So still kind of walking that road. And yeah, I love gardening. I love history. I write historical fiction. I'm working on getting hopefully published traditionally in the next couple of years. I love crafts. Yeah, that's a little bit about me, I guess.

Writing Stories That Honor Marriage

L. A. Sprague 1:31

Yeah. I uh do you have any of your writings out right now that we could go look at?

SPEAKER_03 1:36

I do. So I have a newsletter that I send out once a month, and I have a novella that's available for free to newsletter subscribers. It's for sale too, but you can get it for free signing up. It's called The Letter, and it's a World War II kind of a like an epistolary story with letters back and forth.

L. A. Sprague 1:53

Yeah, I did some browsing on your website, and it's like it at least from what I saw on the website, it's like an old woman and a young man, right?

SPEAKER_03 2:02

And the old woman is childless or something, or lost her son, and yeah, she's childless, and they're actually, they don't know this at the outset of the story, but the reader finds out pretty quickly, they're kind of on opposite sides of the war. So she's a Jew, and he is with the NSB, which was kind of a fascist group in Holland during the war, and their letters cross by mistake, like it's just his letter ends up at her house accidentally, and they form this relationship by letter that is just life-changing for both of them.

L. A. Sprague 2:33

Wow, that's so cool. Sounds like a very unique story. Does that have anything to do with chronic illness, or is that just totally separate? It doesn't. Yeah, that's for fun.

SPEAKER_03 2:42

That's probably the one story where medical things didn't work their way in.

L. A. Sprague 2:46

They usually do. Yeah, yeah. So tell me more about the stories that you're hoping to publish.

SPEAKER_03 2:53

Yeah. So my my real passion is writing married stories, which again, ironically, the novella is the one story that doesn't have like a marriage as the central theme. But I just I feel like we need more examples of godly marriage in in writing, and in fiction in particular. So I write stories that are set between 1900 and the 1940s, and all of them have a married couple kind of as a central figure. And a lot of times chronic illness and and health things make their way in, partly because I'm a nurse in real life. So I think it's always there in my brain anyway, but also just that lived experience. So the first novel that I wrote is actually the story of a woman with chronic illness and kind of the impact of that illness on their marriage as they kind of navigate their way through that.

L. A. Sprague 3:40

Yeah, I want to read that. Sounds so good.

unknown 3:43

Thanks.

SPEAKER_03 3:44

Hopefully, I can get it out into the world. And then I have another story that is it's a standalone. My I have a series of four stories that kind of follow in a community, you know, over the course of 40 years. But my standalone one is about a woman who ends up being dependent on laudanum, and it's kind of a historical lens for the modern issue of substance use and and things like that, which I'm really passionate about too.

L. A. Sprague 4:09

Yeah, that's so unique. Yeah, your story sounds like they have really unique perspectives.

SPEAKER_03 4:15

Thanks.

L. A. Sprague 4:16

Yeah. So you're an author, you're a mom, right? You're a mom of a few kids. Yeah, three teenagers. Three teenagers. How exciting. And you're you're a wife and you're passionate about helping people who are chronically ill, you know, cope with, I guess, how their marriages are affected in that way. And I know that you're also passionate about helping to inform people who aren't chronically ill too. And I think that's special.

SPEAKER_03 4:53

Yeah. I think until you've lived it, you don't really understand the full impact of illness on your life, even some of the, you know, quote unquote simple illnesses, it's a big difference in your life.

L. A. Sprague 5:04

Yeah, for real. Yeah, it's hard to know unless, like you said, you live it. It is hard to understand. But I'm hoping that people who read your book will be able to see through that character's lens and maybe understand a little bit better what that's like.

SPEAKER_03 5:18

Thanks. That's my

Stepping Back From Full-Time Nursing

SPEAKER_03 5:20

hope.

L. A. Sprague 5:20

Yeah, of course. So you're a nurse as well. And are you is that full-time, part-time?

SPEAKER_03 5:29

No. So since I was working full-time when I first got sick, full-time plus, I was going back to school and doing all kinds of things. And it's just not, it's just not possible for me anymore. I have a lot of issues with chronic fatigue and and weakness and things like that. And we've found the best balance for me is actually the best is what I'm working right now. I work two mornings a week, have a day off, and then I work two mornings a week. So four mornings in total. And that has made a huge difference for me in my health.

L. A. Sprague 5:56

So I'm so glad. Dude, I'm I know I'm I feel like I it's weird for me to say I'm proud of you because like I'm younger than you, and what am I to say? But I'm proud of your state for taking the steps to, you know, in your career to where it could actually fit your health. Because it's hard to do. Oh my word.

SPEAKER_03 6:14

Yeah. And I'm fortunate in that my husband, you know, can support us and I have that option to back off a little bit at work. But yeah, it's hard to find that that balance.

L. A. Sprague 6:23

Yeah. How was that process? Did you live in denial of it at first? Or were you pretty yeah, go ahead.

SPEAKER_03 6:32

Yeah, no, I'm sorry, I didn't want to cut you off. I think I did a little bit. I worked for the first probably 15 years of my career as a as a registered nurse. I actually worked in neonatal intensive care and I loved it. And I had become the educator where I was, you know, doing certifications and teaching and, you know, going out to other hospitals and doing teaching, and I loved what I was doing. But we had, you know, competency days and things like that that were like 12, 14 hour days, and it just I just couldn't do it. And I reached a point where it was like I I just took a step back from work completely. And I had a year and a half that I just didn't work at all and spent a lot of time healing and kind of figuring out like that was kind of early enough in the journey that I didn't know what worked and what didn't work. So kind of, you know, just figuring out what does life even look like? Like, how do I get through the day? What are the things we can put in place that help? And and then kind of felt like a growing restlessness at the end of that time, like, okay, maybe it's time. And I had said when I left the hospital that if I went back to work, I wanted to work in the not the nonprofit sector. Like that was very much where my heart was, and and things like that. So I had started volunteering at a clinic for underserved patients here in the town where I live and loved it. You know, I really enjoyed working there and I was like, God, this would be perfect. Like this was on my short list of places I'd love to work, but I didn't feel the freedom to necessarily apply for a job. And I actually prayed, and it's a crazy prayer, but I said, God, if it's time for me to go back to work, let someone approach me with the job. And I don't usually pray that way, but for whatever reason, that was what I prayed this time. And sure enough, six months in, I went in one day to volunteer and they're like, Hey, can we talk to you about a position that just opened up we think you'd be perfect for and just landed in my lap. Oh, that's so cool.

L. A. Sprague 8:18

And you love that, right?

SPEAKER_03 8:20

I love it. I love it. I grew up in Spain, my family, we were missionaries, so I grew up going to Spanish schools and things like that. So I speak Spanish fluently and I speak probably more Spanish than English at work. And it's just, I love, love, love what I'm doing.

L. A. Sprague 8:34

Dude, that's awesome. And it's so important what you're doing too. So thanks for doing that. Like a lot of people can't afford health care. And so places like that are very special, especially for those of us who are chronically ill. That's a very unique opportunity. So thanks for doing that for the sake of all your patience.

SPEAKER_03 8:52

Thank you. I love it.

L. A. Sprague 8:53

It's absolutely

Faith Tested By A Clear No

L. A. Sprague 8:56

so you're a believer. I'd love to hear more about that.

SPEAKER_03 9:00

Yeah. I like I said, I grew up, we were missionaries in Spain before we went overseas. My dad was a pastor. So I've always had a relationship of some kind with God. I was five when I first became a Christian. I think we'd watched the Jesus films or something like that. And I just wanted to pray with my dad, like like most people in the 80s, I feel like. But I don't think my faith really, really became my own. I mean, somewhat through middle school and high school, but definitely in college. And I had kind of that classic that you hear a lot of people have, like that crisis of faith in college. And it wasn't that I was going to walk away from the church. I think I reached a point where I wasn't sure if I could trust God. And I had a lot of anxiety and fear, and just I had a really hard time letting go of whatever he might have for my future and trusting him with it, including, you know, suffering and things like that. But even my plans for the future. Like I had always thought I was going to be a missionary. And that was part of why I went into nursing. I was like, this is a practical thing I could take like anywhere in the world.

SPEAKER_04 9:59

And yeah, that's so relatable. Yeah.

SPEAKER_03 10:02

Yeah. And I think it was like halfway through my freshman year. I remember like kneeling on the floor in my dorm room just in tears and saying, God, send me, like, send me somewhere. Show me that you're going to send me. And it was one of those few times where I've felt him speak very clearly. And he said, No.

unknown 10:20

Wow.

SPEAKER_03 10:21

He said, I'm not sending you, you don't go. And it was kind of devastating. Like I had I had always had in the back of my mind that that was what I was going to do. And it was like, okay, then what do you have for me? Like. And you know, over the next several years, he kind of unfolded that. But yeah, it was, it was kind of through that process of trusting him with that piece. And then gradually, you know, learning to trust him with other things that I kind of grew into the faith that I have now.

L. A. Sprague 10:48

Yeah. I bet that was really devastating to hear that no. Yeah. And if you're listening, you know that part of my story too is also, I thought I was going to be a missionary. And then yeah, similar experience except for you got a clear, clear no, which would be so heart-shattering. And for me, it's still like, you know, maybe it's a possibility someday. But I'm I'm so yeah, yeah, it depends. I don't know. The clarity can that's that's debatable, you know, because it's like I feel like I at least still like someday could work towards that. But you know, on one end you have the clarity, but on the other end, I guess I have the possibility, you know. So not to say God couldn't, you know, tell you otherwise. He for sure could. He can do what he wants. Okay. So was that did you like growing up in Sweden?

SPEAKER_03 11:36

I loved it.

L. A. Sprague 11:37

Oh yeah. That's awesome.

SPEAKER_03 11:40

There's so much history there. I really think all all of my all three of my siblings love, we love, love history. And I think that was part of it. Like you just grow up with Roman ruins and medieval buildings, and you know, it's just an easy part of your life.

L. A. Sprague 11:52

Very cute, very cute.

Celiac And Small Fiber Neuropathy

L. A. Sprague 11:55

So you have a chronic illness. I know that you have celiacs, and you have another chronic illness that I think is maybe, I mean, I hadn't heard of it before you mentioned it. So do you want to talk a little bit about those?

SPEAKER_03 12:10

Yeah, yes. I have celiac disease and I have small fiber neuropathy, and that's where like the smaller nerves actually get destroyed. And they think in my case, it was because of the celiac disease. I didn't have any of the usual like stomach symptoms that you have with celiac disease. Um, but I had you know numbness and tingling and you know, just weird, weird symptoms that didn't necessarily make sense. And sometimes celiac disease can do that, it can actually cause damage to the nerves. So for the first couple of years that I was diagnosed, I was terrified of eating gluten because I wouldn't know. I had no, you know, GI symptoms, and I was like, it's doing damage to my nervous system, and I don't even know what's happening. And now I I do like now that my gut has kind of healed, I do have that. But so I have those. I have my labs show markers for what's called limited scleroderma, which is a disease that affects the skin and the organs and things like that over time. And ironically, those are like the only labs out of the feels like millions of labs I've had done that actually show something positive, and I have no clinical symptoms. So that's so weird. Yeah. So I follow with rheumatology, and every six months we repeat the labs and we do like it can affect your lungs and things. I do like pulmonary function tests every year. And so far, I don't have anything with that. Well, glad to hear that. Brewing, I'm sure, in the background. Yeah. And then, like I said, issues with chronic fatigue and muscle fatigability and weakness and things like that that we haven't really been able to find a good explanation for.

L. A. Sprague 13:39

Uh yeah, that's unfortunate. When did you start experiencing symptoms of any of your chronic illnesses?

SPEAKER_03 13:47

Yeah, it was about 10 years ago. And it was, like I said, when I was working full-time and working a lot of hours, and it started with headaches at first and you know, like third vision, I felt like I couldn't focus on the computer screen at work and things like that. And about the time I got in and had my first round of tests, and they did like a brain MRI first, they were thinking, you know, with some of the the weakness and fatigue and things that develop pretty quickly, they're thinking like MS or something like that. And by the time I got in for those first studies, it just snowballed and the symptoms just kind of accumulated from there. And then over the next few years, you know, I had mine mine is strange. It's always there, the the fatigue and and things like that. But I have really distinct sections of time where it's significantly worse, like hard to function. And during those times, they usually last anywhere from eight months to two years, was the longest. I'm in one right now, but actually it's been the like the least severe I've had. And I think I credit my work schedule and like learning to balance a little bit better with some of that. But yeah, during those stretches, like I use a cane to get around. I have a lot of dizziness, I have a lot of you know, just fatigue. My muscles start trembling after a while just from standing and using them. I ended up getting wheelchair that I can use for longer distances, you know. If we I want to go to the zoo with my family or something like that.

L. A. Sprague 15:04

Yeah.

SPEAKER_03 15:04

So yeah, it was pretty life-changing.

L. A. Sprague 15:06

Oh, do you say you want to build a zoo with your family?

SPEAKER_03 15:09

No, like if we go, I have, I feel like I have a zoo. Oh, okay. No, just like if we want to go somewhere where there's more walking.

L. A. Sprague 15:18

I was like, wow, okay. We are ambitious. Okay, I was impressed. So sorry, what was the first symptom that you think that really like caught your attention? Yeah, the first one was headaches. It was headaches, headaches, like at work and then blurry vision, and then yeah. Yeah.

SPEAKER_03 15:39

And I do have migraines now that have been diagnosed, and I'm, you know, I've had some things to manage that. But yeah, these were just weird, like I call them fatigue headaches, like at the end of the day when you're tired.

L. A. Sprague 15:49

But yeah, man. And you said that that's because your nerve endings die. Is that what you said?

SPEAKER_03 15:56

The the neuropathy, yeah. The nerve endings actually die off. So I have like numbness and tingling. I'll have when nerves die, they tend to cause like a burning feeling sometimes. So, like in my toes and in my fingers and up into my calves, like it'll be like hot daggers kind of stabbing sometimes.

L. A. Sprague 16:14

So ouch, that sounds painful.

SPEAKER_03 16:16

Not all the time, thankfully, but yeah.

L. A. Sprague 16:19

And is that what's causing the issues with muscles and walking and things like that?

SPEAKER_03 16:24

I don't think so. No. The doctors don't think it's related. So I still have something undiagnosed that causes the chronic fatigue and the weakness and everything.

L. A. Sprague 16:33

Oh my goodness. Okay. I didn't, yeah, okay. I just assumed that those were connected.

Gluten Free Life And Hidden Barriers

L. A. Sprague 16:40

Okay. So you have you have celiac, which I would love to hear more about that, as well as the neuropathy, and then something else.

SPEAKER_03 16:48

Something else.

L. A. Sprague 16:49

So, what is the celiacs?

SPEAKER_03 16:52

So, celiac means you can't have gluten, and it's it actually, if you go on eating gluten, like like wheat, barley, rye, you know, products that have gluten, which is the thing that kind of makes your bread actually taste good and feel good, like the texture. Yeah. That stretchy texture. If you go on eating it, it can actually increase your risk of cancers, it can shorten your life expectancy, like it can actually have some pretty serious effects of react disease. But in the moment, most people have like upset stomach or they'll get brain fog or they'll have diarrhea or something like that if they eat you know, accidentally or on purpose if they eat gluten.

SPEAKER_04 17:27

Okay.

SPEAKER_03 17:28

So it's it's one of those diagnoses that until I had it, I didn't, you know, I just, oh, well, you can't have gluten, no big deal. You know, you get gluten-free or whatever. But you don't realize how how social eating is. You know, like every time there's birthday or retirement or, you know, whatever, you have cake and everybody sits around eating cake, right? Well, celiac, you're sitting there just watching everybody eat cake. Yeah. Or, you know, the biggest thing with celiac is the cross-contamination. So even though something is gluten-free, if it's cooked on, you know, certain types of cookware that can kind of harbor gluten or your spices are contaminated or whatever, like that's the thing that really causes the stress and the the frustration. I I joke with my husband all the time. Like, I've got all these weird health things, and the thing I complain about the most is probably the celiac disease.

SPEAKER_00 18:18

Because really, it's just it's a barrier.

SPEAKER_03 18:22

Like, and I think that was the the initial experience in general with chronic illness for us was just this feeling of barriers. Like, I can't eat in all the places that people eat. Like, there are five restaurants that I can choose from, or I can't, you know, travel on like we'd love to do for our 25th anniversary in a couple years, we'd love to do a train trip out west. And you know, a lot of them are all inclusive packages. I'm like, I don't know that I can eat the food, like, you know, things like that. And then with the mobility stuff, you know, like you you go to a store, and a lot of times, especially smaller stores, if they have like a wheelchair or an accessible entrance, it's not the main door, it's around the back somewhere, and you feel like a second-class citizen, you know, going in. And it just it was eye-opening for us, I think. Like all these barriers that you don't even realize are there when you have a healthy, able body that just feel like you know, being left out of things.

L. A. Sprague 19:19

Yeah, that sounds really discouraging. Is your household gluten-free too?

SPEAKER_03 19:25

Like, do you Yeah, we uh so we moved about a year ago, and when we moved, I was like, can we make things as gluten-free as possible? Like the pantry now is all gluten-free stuff and we have one little cupboard for gluten, and we have pants that yeah, we kind of flipped because our old house was the opposite. Like, I had one little shelf with my stuff and then the rest. And I would love to go fully gluten-free, but like I said, we have three teenagers. And honestly, gluten-free is expensive when you're feeding teenagers, especially. So I bet. Yeah, yeah. Once they once they move out, like my husband has said too, like, we'll be fully gluten-free and it'll it'll make life a lot less complicated for me.

L. A. Sprague 20:00

But yeah, I hope so. What's your favorite restaurant that is gluten-free?

SPEAKER_03 20:08

So, chain restaurant-wise, red robin actually does really well.

L. A. Sprague 20:13

Red Robin!

SPEAKER_03 20:14

Uh-huh. Really? Burgers, their fries are in a separate fryer. They don't fry anything with. I mean, you'd want to check with your like local red robin, but um chain, they do really well. So that's probably my favorite. Good to know. Mm-hmm. That's probably my favorite, like, you know, bigger one. And then we have a kind of a series of like local restaurants in the area here that are owned by a couple of the same people. Um, but all of them have scratched kitchens that do really well with gluten. So I could do like dude, yes. I could do, yeah, like pump style food. It's kind of nice.

L. A. Sprague 20:48

That's awesome. I'm happy to hear that.

unknown 20:51

Yeah.

L. A. Sprague 20:51

But Bummer, you don't have as many options as you used to, but I'm glad you found some good alternatives.

SPEAKER_03 20:56

Well, and it's nice. There are good apps out there right now. Like even when you're grocery shopping, you can scan stuff and make sure it's celiac safe. And there's one called Find Me Gluten Free that I use all the time, especially when I travel.

L. A. Sprague 21:06

Oh, yeah, yeah. I know what you're talking about. Yeah.

SPEAKER_03 21:08

And that's really, really helpful. And it's all like people that actually have celiac or gluten entrance or whatever actually leave the reviews and they have to go through a vetting process to know what's safe and what's not. So it's yeah, it helps a lot.

L. A. Sprague 21:20

Good.

Pacing Rest And Home Accessibility

L. A. Sprague 21:21

Yeah. What are the recommendations, or I guess what has helped you, not with just celiacs, but also your unknown condition and also with your neuropathy? What have you found helpful on top of eating gluten-free and on top of your work schedule?

SPEAKER_03 21:39

Yeah, I think the big thing that I'm not always good at is pacing. You know, like when you have activity building in breaks and and stretching it out for, you know, a couple days if you need to or whatever. And I'm I'm a doer, and the probably the most conflict in our marriage has come over me, like pushing through and wanting to do my husband's like, whoa, stop, you can't. But yeah, so definitely pacing. Um, I take a nap every day. That's part of it with my work schedule, is that I can come home and take a nap before my kids are home from school, and that makes a big difference. I'm trying to think of some of the other things, just little things around the house. Like when we moved into this house, we said we needed me to be able to live on one floor. Our old house was a really cute 1940s house, but the bathroom was upstairs. So I was either stuck upstairs all the time or I was going up and down stairs, which stairs are really hard for me when I'm in bad stretches.

SPEAKER_04 22:30

Yeah.

SPEAKER_03 22:31

Um, so the house we moved into is a big old farmhouse, but we've got a bedroom on the main floor. We've got like, you know, zero threshold entrance that it I can I can get by on one floor if I need to, um, which makes a big difference.

L. A. Sprague 22:44

Awesome. I'm so happy you were able to find that.

SPEAKER_03 22:47

Yeah, me too.

L. A. Sprague 22:48

So was you said with the entrance, like you can just go right in without any stairs or anything?

SPEAKER_03 22:54

Yeah, it's just a ground level entrance. I think with wheelchairs, they could wheel right in, or if I, you know, if I need the wheelchair at home for some reason. Yeah, that's awesome.

L. A. Sprague 23:03

How

Learning Freedom With A Wheelchair

L. A. Sprague 23:04

has it been adapting to using a wheelchair? Because you're you're younger, right? What 30s?

SPEAKER_03 23:09

Yeah, well, I'm 40s now, but I was 32. Yeah.

L. A. Sprague 23:13

Yeah.

SPEAKER_03 23:14

Yeah. That was probably one of the hardest decisions, the biggest step, I think. And it we kind of like we walked into it gradually. And the first time was actually we were on a trip and my my grandparents lived up by Niagara Falls in on the Canadian side. I'm Canadian, and my kids had never seen the falls. So we were up there for a birthday celebration for my grandma, and we're like, we really want to show them the falls. But if you've ever been around that area, there's not a lot of parking right down by the falls. Most of it is up like at the top of a really steep hill.

SPEAKER_04 23:44

Yeah.

SPEAKER_03 23:44

So thankfully, someone had commented beforehand. They're like, you might want to borrow a wheelchair. Like, that's a lot of walking for you. I was in a really bad stretch at the time. So we did. And it was, it was one of the funnest memories in hindsight. Like it was, it was one of those, like we sat at the top of the hill, and I'm looking at this the wheelchair, and I'm like, I don't know if I can do it. If you want to see the falls, this is how we have to do it. Like, you really think you can walk down the hill and can't do it. So we got in and it was in March that we were there. And I'm not kidding, the hill was like felt vertical. Yeah. The whole way down. I'm like gripping the handlebars, like, please don't drop me, please don't drop me. All the way down, all the way down. And we had a great time down by the falls. Like we could walk the whole length of it. And you know, I was in the wheelchair, so it didn't totally wear me out.

SPEAKER_04 24:29

Yeah.

SPEAKER_03 24:30

And then the return trip back up, because it was March, like there was salt for the snow everywhere. And my husband could not get traction to be like we died laughing. I mean, it was one of the funniest. I mean, we made it, thankfully. And I felt badly for him because it really was a lot of work for him. He was laughing as hard as I was. Like it was just hilarious. That's awesome. But that, like that was kind of the bedrock experience for a wheelchair. And that's been my experience with the wheelchair. Like the times when I push hard and I'm like, nope, I'm just gonna walk it. I'm you know, I've got this kind of thing. I'm so exhausted, and it takes all of my energy just to stay upright and to walk and you know, that I don't enjoy it. I can't be present. And when I'm in the wheelchair, there's just this freedom, like, okay, I can laugh, I can, you know, enjoy this, I can whatever, because all of my energy isn't going to things it doesn't need to go to.

L. A. Sprague 25:24

Yeah. Yeah. I yeah, I I don't have nearly like, I think, as uh as debilitating as chronic illnesses as you do. But my husband had borrowed a wheelchair when we were on our honeymoon at the aquarium. And just like you said, it's just like being able to not have to worry about like, okay, like, do I actually have enough energy for this? How is this gonna affect my health later today? Like, yeah, and like you said, we laughed so much, you know, and I yelled at him a billion times not to push me too fast, you know? It's just like, and it was so freeing. And yeah, so I'm glad to hear that you had that experience. That's so cute. How did you did you ever deal with like, or do you ever deal with worries of like perceptions?

SPEAKER_03 26:32

Yeah, I mean, it's it again, it's an eye-opening experience. You realize how seldom I make eye contact, and this is terrible. I shouldn't, it shouldn't be this way. I'm a nurse even, but how seldom I make eye contact with people in a wheelchair, or you know, like it's little things like that that you really become aware of when you're sitting like, you know, much lower than everybody else in a crowd or or whatever. So I mean, that was an adjustment. Like, I don't know, you just again, there are barriers, right? You don't think about until you have to have them. But I think the thing I worried about more was how it would impact my husband and especially my kids, because they were, they were little when this started. My daughter was five and my son was 10, and then we had an eight-year-old in between. And it, you know, like the there was one time where my daughter was cheering for her elementary school at a basketball game, and she was so excited about it. And she's like, Mom, are you gonna come and watch me? And I was having like an exceptionally bad day. Like I'd been on the couch all day, couldn't hardly get up. And I was like, I don't know if I can do it. I said, if I have, if I go, I'm gonna have to use the wheelchair. And I had never used the wheelchair for a school function or anything like that before. Like it was just when we were out other places. And she's like, Then bring the wheelchair. That's okay. You know, I'm like, so we got in there, and you know, she's across the gym with all her friends, and I can see all of her friends like looking over. And, you know, here I am. I was walking a week before, you know, like on all of a sudden, like it just it was it had to have been so weird for them. And all I could think was, she's gonna be so embarrassed, like she's gonna be humiliated that I'm sitting here in a wheelchair. And but I was there, I was able to cheer for her, you know, whatever. And we got home and I said, How was that for you? Like, was it were your friends wondering what was going on? Like, was it really awkward or whatever? She's like, No, I just told them sometimes you use a cane, sometimes you use a wheelchair. That's just our life. And she just like moved on with it. And I was like, Okay, maybe we're okay.

L. A. Sprague 28:25

That's so awesome. I love that it shows you were like maybe you know, overthinking it or worried about nothing, and that your daughter just like is happy that you were there. And I also think it was very wise of you and a good mom move to check in with her after and ask how that was for her. That was so considerate of you.

SPEAKER_03 28:46

I think I was embarrassed.

L. A. Sprague 28:49

Oh, that's so cute. So you have a lot of perspective from being a chronically ill person. And I know that you mentioned that you're a nurse and you keep emphasizing over and over again, like, oh, I didn't know this until, you know, I got sick. I didn't realize this until I was in a wheelchair. So for nurses listening or for doctors listening out there, do you have any

How Clinicians Can Show Real Care

L. A. Sprague 29:12

advice on if they're able-bodied and maybe can't really empathize with being chronically ill or having all these mysterious symptoms? Do you have any advice for a professional listening right now?

SPEAKER_03 29:27

Yeah, I think I think for me at least, sometimes I get so caught up in finding the answers for people and just fixing the problem and things like that that I miss noticing that there's a person in the middle of it. And we don't intend to do it. I mean, we mean well, we're trying to make their lives easier and things like that. But I I think sometimes I forget to think like, what kind of impact is this having on their life? And sometimes it's simple complaints that don't seem like that big of a deal to me, like eat a gluten-free diet, right?

SPEAKER_00 30:00

Yeah.

SPEAKER_03 30:00

But I don't, I don't always realize how seriously that's impacting their life. So I think taking time to acknowledge that, that there's a human in the middle of these this cluster of symptoms, but also then listening and not assuming that I that I know. And that's something that I still am working on because I have my experience, but I don't have everyone's experience. So listening to people asking questions and being willing to listen to how you know how this affects them, what they're feeling, what it, what it's like to have to look for answers or or whatever, reading, you know, from other people or listening to podcasts, like just expanding your your base of empathy and understanding, I think can only make you stronger as a professional and help you kind of give that that whole you know wraparound care that people need. They're whole people, they're not just the symptoms.

L. A. Sprague 30:53

Yeah, absolutely. Thanks. I think that's helpful. If you if you're listening and you're a medical professional, we're very happy that you're here. It's so I think caring of you to try to listen to a podcast, understand your patients better. So kudos to you. Thank you. I know that you guys in maybe April, you're aware of this to kind of get a bad rep in the chronic illness community. It's always, oh, my doctors doesn't listen. And that's fair because a lot of us do run into issues with that. But we're grateful that you you're here. You know, we're grateful that you're being different in your, like April said, seeing the person amidst the symptoms. So we appreciate you. I'm sorry. Oh, you're good. Go ahead.

SPEAKER_03 31:36

I was just gonna say one last thing for for any medical professionals that are listening. I don't think you realize the impact it has when you do listen, when you do care, because that's not always the experience we've had, especially if you've gone years and years looking for answers and you feel like you're I mean, you start to doubt yourself. Like, am I just crazy? Am I making this up? Am I being melodramatic? Am I, you know, whatever? And the the doctors and the nurses and and other medical professionals who have just just little things like put a hand on my shoulder and said, This must be really hard, or I'm so sorry that we're not finding answers, or just acknowledging that this has been a long road, or that, you know, whatever. Those people stand out and made such a massive difference to me, even as a nurse. Just that encouragement. So I guess an encouragement to you to take that time and just show them that you care. I don't think you can overestimate how much that means.

SPEAKER_00 32:36

Yeah.

L. A. Sprague 32:37

Yeah. I had a doctor who he just like looked at some interactions between me and other doctors and just like look me in the eye and was like, they were mean to you, you know, like they didn't need to do that. And just to have that one doctor, like just the one who can, like you said, touch you on the shoulder, look you in the eye. You know, I've had other doctors that literally haven't looked me in the eye the whole appointment, you know. And it just means a lot to be actually heard, you know, and even if you know you can't find the answer, even if it's above your whatever, your pay, I don't know if it's pay grade, but pay grade, but yeah.

SPEAKER_03 33:18

Your knowledge base or your whatever, yeah.

L. A. Sprague 33:20

Yeah. Like even if you have to pass this on to someone else, like just that moment can be very honestly life-changing for us. It can it be can be very impactful. So thanks for that advice. Much appreciated. So I would like to hear more about you and your faith in chronic illness. How have they impacted one another?

SPEAKER_03 33:47

Yeah. So, like I said, I had faith coming into this. But I think like any of those really hard things we face

God Says I Know What This Is

SPEAKER_03 33:56

in life, it gets put to the test. And this definitely did. And I I mean, in in cycles through the years, um, I've struggled, but I think over the long haul, it's deepened my faith in in ways that have have honestly made me reliant on God in ways that I wasn't always, you know, when I was healthy and able to do whatever I wanted to do. And and then that process of trusting Him. I mean, not unlike the experience in college early on, you know, we were going to so many doctors. I think in the first five months, I had had 30 different appointments with specialists and testing and you know, all kinds of things. And all of them were yielding, you know, nothing. And we got turned, not turned away, but sent on from doctors so often that we started calling it the breakup. Like you knew after the first round of negative tests, you were gonna get that phone call from the doctor, like, hey, we don't know what to do, you know, wash their hands of you kind of thing. And I get it, but it just, you know, time after time after time was so discouraging. And I had one day where I was like, God, I just need a promise. I need something to hold on to. I I need you to give me a promise that's specific to this situation. And I was praying and reading my Bible, and it was again one of those few times where he was very clear, and what he said was, I know what this is. And I was so angry, so mad, because that wasn't a promise. That wasn't an answer. It wasn't, you know, it didn't feel like what I was looking for. But over the years that followed, the number of times I've come back to that and rested on those words, you know, just for one thing, it was it was confirmation, you know, because I think anytime you have these kind of nebulous symptoms that don't show up in testing or whatever, especially when it goes on and on and on and you keep getting told, no, it's negative, it's nothing, you know, whatever. Yeah, you really do doubt yourself. And and so for one thing, it was confirmation, like this is something, and I know what it is. And the other side of it was this wasn't a surprise to God. And I mean, that shouldn't come as a surprise to me, but it it it turned my life upside down so much that I think I assumed it did the same for God, and it didn't. This was part of what he had always known was in store for me, and not that that doesn't come with some pain, but it also comes with some peace because I'm not living in some plan B like we got put off on the sidetrack of my life. I'm still living the the exact life that he knew I was gonna live, and there's purpose in that. And I think so many times I've come back to those words, and I'm 10 years in and still don't have all of the answers to explain what's going on. And I I joke that God and I have two things on our agenda when I get to heaven. One is to sit down and have bread for dinner for dinner, and he always just say, okay, what was it? Like, tell me what because I don't at this point I don't think I'm gonna find out in this lifetime. I and there's a whole story with that too. But sometimes the things he gives us are not the things that we think we want, but they're the things we need. And so that I think that experience and that having to rely on him have just taken my face so much deeper over the last 10 years than it ever could have been without this.

SPEAKER_02 37:13

Yeah. In what ways do you feel like your life has gotten deeper?

SPEAKER_03 37:19

I think I think the trust, I think my prayer life has deepened when there are things that you can't physically do. Yeah, makes sense. You know, especially in things like parenting and and and in marriage. Like there's there's so many limitations with chronic illness. Like I just cannot be the mom that I wanted to be, that I thought I would be. I can't be the wife that I wanted to be. And I I I talk sometimes about how, you know, with chronic illness, it's like a third person in the marriage all the time. It's always there. And when you when you have that constantly, you know, that that feeling of not failure, not inadequacy, but just feeling like you just can't live up to everything you wanted to be, and you can't do all the things that you want and sometimes need to do, it makes you reliant on God. I I have to turn him, I have to ask him to cover the gaps. And thank goodness I have those gaps and I'm aware of them because I could be living a different life and thinking I have it all together. But you know, it it's just taken me deeper. And when I when I go through these hard seasons, I've learned what it means to really sit with him and to really not get up until he's answered, until he's, you know, until he's been there with me and to expect it and to to really, I mean, these scriptures that are theoretical until you've actually gone through really hard things, they're personal now and they're internalized, and they're the first things that come to mind when I hit those difficult patches patches again.

SPEAKER_00 38:53

Yeah. Yeah. In what ways do you feel like you're not the mom that you wanted to be? And how have you seen God come through in those ways?

SPEAKER_03 39:06

I mean, the the basketball game is a perfect example, right? Like I would have loved to have been jumping up and down and cheering, you know, having her friends all over to do their hair before, and I just I can't do that. But I also see God's grace in in the way he's used this in their lives. And I wrote a post one time for I can't remember if it was for the mighty or just for my blog about you know, five reasons why I'm glad my kids have a mom with chronic illness, and I meant it, you know? Wow. Because it's developed empathy in them. Like all these things, like we talked about before that you don't even realize the impact it has on people. My kids do realize they do see the barriers and they're so much quicker to recognize them even than I am. And you know, things like you know, when people offer to help and they give you kind of these, you know, just blank check, hey, if I can do anything, my kids have learned that what's actually helpful usually is a really concrete offer, like, hey, can I pick your kids up from school? Hey, can I bring you a meal on Friday? Hey, can I come clean your house? You know, those things, and they've watched the times when people have done that or the way we we've learned and done that for other people, and it's changed the way that they approach people when they need help, you know? And and even things like my my oldest just got accepted to college actually this past week. He had last night, and yeah. But he wants to study video game design and specifically he wants to make games, video games for people with disabilities, like vision impairment or you know, limb differences or whatever. And and that came directly from the experience of watching the limitations and the barriers and the things that we experienced through my illness. So God's been faithful, you know, even in the tangible things to make up for those deficits and to shape their character in ways that I don't think it would have been shaped if if they had had a healthy mom. But then also just his faithfulness to guide them. I mean, he's faithful to all generations. And I have come back to that verse or those verses because it's several places in the Bible, but over and over and over, especially in the teen years, you know, he's faithful. He doesn't just take care of us in our chronic illness, but he takes care of our whole families, and he hasn't forgotten that our kids are growing up in the midst of this or that they have futures too. He takes all of that into account and he's good to all of us.

L. A. Sprague 41:25

Yeah, that's so cute what your son's gonna do. It literally gave me goosebumps. That's so pure.

SPEAKER_03 41:33

Yeah, I'm excited for him. He's got some really neat ideas.

L. A. Sprague 41:38

So you're really passionate about marriage and chronic illness. I would love to hear some of the things that you and your husband have learned since you've developed chronic illnesses.

SPEAKER_03 41:49

Yeah, I think I mean, like I said, it's like the third person in the marriage. And so one of the things

Marriage With Illness Always Present

SPEAKER_03 41:56

that we've learned and are learning is how to navigate that, how to still have a marriage that's about two of us and not, you know, about the chronic illness. And sometimes that's really hard when you live with physical limitations. You can't just set them aside and and you know, pretend they're not there for the weekend. But we've learned just little ways even to connect, whether it's you know, we have a notebook that we swap back and forth sometimes that we write in, or you know, sitting on the swing out in the backyard because we can't go for walks because I'm in a bad stretch, or you know, just little ways to to seek out a connection in spite of you know everything that's going on. And I think one of the other things we've learned is to be honest, like this is hard on both sides of the equation. It's hard for me as the person with chronic illness and you know, get frustrated and you get discouraged and tired, and in that in addition to dealing just with the physical symptoms, but this is also really hard for the person who's not sick, whose life has also been turned upside down, and who are left picking up the pieces and doing the laundry and cooking the meals and driving the kids and you know, carrying the full weight of all the things that I can no longer do, it all falls on him. And I think when we learn to acknowledge that and to to take care of each other in that, it made a big difference for us.

SPEAKER_00 43:18

Yeah.

L. A. Sprague 43:19

How do you not how do you avoid or correct yourself? I don't know if you've ever struggled with this, but in feeling like a burden in that that's the that's actually the premise of my book, the chronic illness one is, and I called it the patient wife because you feel like he how can he see me as anything other than a patient, like I'm an invalid.

SPEAKER_03 43:43

And that, you know, when you're in those really bad stretches, like I've had periods where thankfully I haven't needed help with everything, everything, but even recovering from surgeries or things like that, where like you can't even shower yourself and you feel like he didn't sign up for this. Like, this is not he he's not a nurse, I'm the nurse, you know. Like this is what he's signed up for. And it's really hard, but again, we we made that vow to love each other in sickness and in health. And I think that hits a little. Little differently when you when you hit that story. I mean, you make that vow on your wedding day and you think, oh yeah, in my 60s or 70s or whatever. But when it comes at 30, it's a different story. And it's you have to try new ways to love each other in the sickness, in the health, you know, that that look different from what normal couples can do. And sometimes it's things like I one of the best things my husband does for me is is make me laugh. And we we had at the beginning of this current crash that I'm in, I have some like orthostatic intolerance. I don't have pots, but I get dizzy and I, you know, have moments where like I I will actually pass out if I don't sit down, kind of thing. And we were at a store like early, early on in this crash, and in the middle of the grocery store, I was like, I need to sit down. Like you can just I I can feel it coming when it happens. And he didn't make a big deal. He just like pulled the cart over to the side and I like dropped to the floor and I sat on the floor in the middle of the aisle. And for the next probably 15 minutes, there was a candle display across from us. We love like scented candles and stuff like that. He spent the next 15 minutes like picking candles off the shelf and bringing them over for me to smell. And hey, what do you like think about this one? Like, like it was just normal life, like no big deal. And but those are the ways that he's learned to love me in sickness, you know, that he doesn't brush it under the rug, oh, it's nothing, you're fine, get up. But he also doesn't make a mountain out of a molehill, and he'll, you know, kind of find ways to help me laugh in it. And it's I don't envy him the job he's had to try to navigate that and figure out like where that line is, but but I've needed that levity so many times when it's like it's either laugh or cry, right? And so he helps me laugh.

L. A. Sprague 45:54

That's so cute. How do you like stay disciplined in your napping and taking care of yourself? And also, how does that impact your husband and your family? How do you guys work all that out together?

SPEAKER_03 46:19

Yeah. It's, I mean, it's it's at this point, it's baked into our lifestyle that when we, you know, every day after work, I have to lay down, even during the summer when they're my husband's a teacher, so they're all home for the summer. And that's the time when it bothers me the most because you have that guilt and you feel like you're missing out on you know, family life because you're gone at work and then you're gone for an extra two hours to happen whatever. But but we've learned that it's essential. Like if I don't, and and this is something that my husband has been really good about, sometimes technically, sometimes not, admittedly, but reminding me of. And we pay for it. Like if I push too hard and I push past my limits, or when I'm in crashes and I'm just like, nope, I'm just gonna, you know, get ahead of steam, get my way through this. Number one, I crash for the rest of the day, but I also crash for the rest of the week. Like, usually I'm paying for it for two or three days afterwards. And number two, and this is what he's been good about reminding me of I'm not the only one that pays the price for that. They all pay for it. Like if I push too hard and ignore my limits and I'm in bed for the next three days, then they're without a wife and mom for the next three days. And he's carrying the load of the you know, family just keeping everybody going that much more. And, you know, it's it's not just me that's affected by it. So knowing that does keep me in check a little bit more. Like those times when I'm pushing through, it's like, okay, maybe I don't want to stop for me, but at least I can stop for him.

L. A. Sprague 48:03

Yeah, which is which is wild because I think what we can perceive as, oh, well, I'm being selfish if I take a nap. It's actually you're being selfless. That's wild.

SPEAKER_03 48:16

It is, it's it's a yeah, it's a complete reversal of what we feel in normal life, but yeah, absolutely.

L. A. Sprague 48:23

Wow, thank you for that. Do you have any specific advice for you know married couples who one of them is a caretaker and one is the caregiver or sorry, caretaker and then the receiver. What would be your advice to each of those roles?

SPEAKER_03 48:44

I think number one, honesty for sure.

Caregiver Support And Honest Conversations

SPEAKER_03 48:47

It's it um this is hard for both of you. You both know it, you might as well be honest about it. Yeah, and that's hard sometimes because it feels like judgment on the other person when you're saying, you know, it's you know, when the person who's healthy is saying it's really hard for me when you're in bed all day, and the person in bed all day can't do anything about it. Like it is hard to hear that. So having the humility and the love for that person to be willing to listen to it without defensiveness, which is really hard. But letting each other be honest about this journey, because this is a long journey. This is not, you know, for most of us, this is not like a blip on the radar a few months and then we're on with our lives. Like this is a lifelong thing. And we're gonna have to be, if we're gonna have a strong, healthy marriage, we're gonna have to be able to talk about it and to be honest with each other about it. But then also on the kind of the flip side of that is having somebody outside of the other person that you can be like really, really honest about it with, you know, so that because it is there is an element of hurt in it on both sides, and you you have to be honest about it, but you can't hash it over and over and over, right? So having somebody that that you can talk to, and that's really I think that has been the hardest thing for us. It's easy for me to find people that can relate to being sick. There are not a lot of caregivers who are willing to talk about how hard it is, or or even just caregivers who are in their 30s or 40s, right? Like statistically, they're they're usually older people, and that's a whole different set of challenges. So for my husband to find somebody who not only is willing to be honest, but who knows what it's like to actually carry this weight, to actually be the healthy person, you know, bringing everybody else along, it's it's hard. It's really hard. And if you have a diagnosis, I think support groups are a good place to start with that. If you don't have a diagnosis, then you don't have that either. But but finding people that that you can be honest with, and maybe it's a parent or a friend, even if they can't fully relate, I think it just helps to spread out some of that pressure and take it off of the marriage. And then, like I said, finding ways to connect that do fit with what you can do with breakfast in bed, you know, like maybe you can't go to a restaurant anymore, maybe you can do breakfast in bed, or you know, laughing together in the wheelchair when he pops wheelies or whatever. Every single time, and it's still like things like that, like finding those things and and finding new rhythms, like new things that you like to do together that you can do together. Maybe it's reading, maybe it's watching. I don't know. Sometimes we've done like virtual walks through. I would love to go to Egypt. So we've done like virtual walks through Egypt that you know, we're not actually going anywhere or doing anything, but I feel like I've done something, you know, finding those shared experiences.

L. A. Sprague 51:39

Where do you find those?

SPEAKER_03 51:40

Like the virtual walks, like YouTube and stuff like that.

L. A. Sprague 51:45

You can just what do you look up? Virtual walks?

SPEAKER_03 51:47

Yeah, virtual walk. There are people that wear like a yeah, like a GoPro or whatever and just walk. You can pull on from the thing.

L. A. Sprague 51:55

I I've I may look this up myself. That's incredible. I also would love to go to Egypt.

SPEAKER_04 52:00

So there you go.

L. A. Sprague 52:02

That's awesome. So I know that you had mentioned earlier when I asked, you know, how kind of Christ and your your chronic illness have impacted one another, or I guess your relationship with Christ. And you mentioned that God just said, like, I know what this is. And at first that made you angry. And now you've

Seeing Chronic Illness As Plan A

L. A. Sprague 52:26

moved to accept it as a form of encouragement. I'm wondering if either you'd want to expound on that or tell us more about ways that you have been encouraged by the Holy Spirit in your chronic illness journey.

SPEAKER_03 52:43

I think one of the one of the things, and I kind of touched on it briefly, it's really hard when you have a chronic illness that turns your life upside down, that upends your career, your plans for, you know, family, your whatever. It's really, really hard not to not to view it as as plan B for your life. And I think that's been the biggest thing for me. I I've I've had people with really good intentions, and I know where their where the heart comes from, and I don't disagree with them, who have said, you could pray for healing and God would heal you. And there has not been a second in this journey that I have doubted that that God could heal me. But there also has not ever been a moment in this journey where I felt like he would. And that is a that's a hard pill to swallow. Sometimes at the outset, but over the last 10 years, I have seen him use my illness. I'm gonna talk about how it's helped my family, how it's deepened my faith, how you know I've been able to write about it on, you know, my blog and the mighty and you know, all different places to help people gain understanding, but also feel seen and heard, people that are experiencing it. You know, all of these things are things that number one, I wouldn't have done without the chronic illness in my life. Like I wouldn't have even had the awareness of what it's like. And and number two, he has multiplied the the impact of this illness so much in the first 10 years that there's part of me that I don't want to be healed. I do, but I don't want to be healed. And that was a really long journey, I think, to get to that point. But once I could start to to trust him enough and to see the goodness in the hard things enough to say, maybe this is plan A. And that's hard to relate a good God, a loving God, to the hard things that we experience in chronic illness. So I'm not saying that that's an easy truth to say hello. But what if this is plan A for my life? What if this was what he always had in mind and always intended, knowing that I would steward it. And we don't look at chronic illness as a gift to be stewarded, but in a lot of ways it is. It's it's an invitation to slow down, to step out of the current of life, to build in rest, which was always part of his plan for us, you know, to build in intentionality in our relationships, to grow our empathy and the way that we do good for others because we understand what it looks like to do good for others. Like all of these things aren't plan B things, these are central to his purpose for us. And sometimes the way he brings that about is through something like chronic illness.

SPEAKER_00 55:30

Wow, that was so good.

L. A. Sprague 55:33

I learned, yeah. Yeah, absolutely. I think one challenge or and blessing that I've gotten from getting a chronic illness is the need to take care of our body, right? Because it's like we all know, oh, I should eat better, I should exercise better, I should sleep better. We all know that. And some of us, God bless you, are more disciplined naturally, and that's awesome. And other and others of us, maybe God had to hit us with a chronic illness. I don't know. And yeah, because if not, there's other consequences if we don't. So yeah.

SPEAKER_03 56:17

Exactly. Yeah, in your tracks, and it, yeah. I mean, our bodies are temples, and I think it's yeah, you you realize how much you need to take care of that temple when you're hit with chronic illness.

L. A. Sprague 56:30

For real. Oh, well, this has been so insightful. Do you have any last word? I don't know. Some one do you have one last thing you would like to say to Christians with chronic illnesses or anyone listening?

SPEAKER_03 56:47

I think just what we've said, you know, be honest about it, be honest with God. It's okay to be angry with God. He can handle that. And he, I think our our we start taking those steps to deeper faith once we allow ourselves to be honest, to be mad that the promise he gave us isn't what we wanted, or that there was no promise at all, you know, specific to our situation.

Honest Prayer And Open Hands

SPEAKER_03 57:08

To be angry that, you know, we can't be all the things we thought we would be. And and then to lay them out with open hands and say, okay, then who do you want me to be? Like you've given me these things in my life. And for those of us that came to chronic illness already being parents, I think there's a gift in that in a way, because I know it can be so hard when you when you haven't already got a family. It it's just so hard. It impacts that decision so much more. But that being said, you know, being honest with God and saying, You've given me these kids without the ability to take care of them. Like, what do you see here? Show me and and work through me in ways that I can't do for myself anymore. And just trusting in his faithfulness to us. And I think it's so easy to be tempted to feel like he's forgotten us or like we're being punished or like this isn't fair, and it certainly doesn't feel fair a lot of times. And we can be honest about that too. But there is so much sweetness and so much goodness that I think I I honestly think is reserved for those of us who suffer in the body that people who are healthy don't experience in the same way. So let it be an invitation, you know. Open yourself up to it and and open your hands enough to see what it is that he might want to do, not in spite of your illness, but because of it in the very middle of it.

L. A. Sprague 58:38

Wow. Thank you, April. I appreciate that so much. Well, I really do appreciate all your perspectives. I know that it is personally impactful for me to hear just the knowledge of yeah, how we how we treat our bodies isn't just how we treat ourselves, but how we treat those around us. And even if you're listening and you're not married, you have friends, you know, maybe you have a job, maybe you don't, maybe, you know, certainly you might have siblings or parents or just anyone around you, you know how how you steward your body with your chronic illness does impact those around you. Heck, even if you don't have a chronic illness, you know, if you're running on no sleep all the time and not eating well, you might be grumpy, you might say things that you regret. And just for those of us with a chronic illness, this is just a little heightened. And and so that's a very encouraging thing for me to learn that for me to take care of myself is also for me to take care of my husband. So I really appreciate your wise perspective on that.

SPEAKER_00 59:40

Thanks. Yeah.

L. A. Sprague 59:42

Okay, so I'm gonna put your website in the description below for anyone who's interested in reading your material. Do you want to say what your website handle is?

SPEAKER_03 59:54

Sure. Yeah. So I have two websites. I have one where I write about chronic illness, a blog, and that's livable by design.online. And

Where To Find April Online

SPEAKER_03 1:00:03

then I have my author website, which is where I post about writing. I have devotional blogs that I post on there. That's where you can find the novella that we talked about earlier. And that's aprilbarcolo.com.

L. A. Sprague 1:00:15

So cool. And if you want to, you can also go to Christians with Chronic Illnesses, our website. I honestly don't know what our website is, but we have April's link. We have April's information linked there. That's also in the description below. So April, thanks so much for recording with me. I really, really appreciate it so much.

SPEAKER_03 1:00:37

Thank you. I was glad to talk to you.

L. A. Sprague 1:00:39

Oh, thanks. Me too. Thank you so much for being a part of the Christians with Chronic Illnesses community. Please remember to follow rate and subscribe to the show. You can also follow us on our socials at CWCI Podcast. And if you're interested in sharing your story, please email us at cwcipodcast at gmail.com. If you are interested in contributing

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L. A. Sprague 1:01:00

to the production of Christians with chronic illnesses, please see the show notes below for subscriptions starting as low as $1 a month, or email us for a more direct way to give. This show is hosted and produced by Ellie Sprigg, and our incredible logo, thumbnail, and overall CWCI artist is Brianna Middleton. This show is intended for entertainment and encouragement purposes only. Please talk to your doctor before trying anything you hear on this show. Until next Monday.