Sjögren’s and Communing with God with Myra Delikat

What happens when your body unravels right as your calling takes shape? Myra joins us to share a raw, thoughtful journey through Sjögren’s syndrome—years of nausea, fatigue, and brain fog; “normal” test results; a job she couldn’t keep; and the long search for a clinician who would truly listen. The turning point came through a rigorous, personalized routine: consistent sleep and meals, hydration, targeted nutrition, and medical massage, plus simple, whole-food cooking and careful sourcing. It wasn’t a miracle fix. It was a slow, stubborn climb back to stability, one boundary at a time.

We talk about the faith side without pretending it’s tidy. Myra grieved a theater career that once felt like a mission field, wrestled with anger toward God, and learned to separate identity from productivity. Her prayer life looks like a daily walk—naming joys, doubts, and fears to a God who already knows. Beauty becomes a practice: plants that ask for water, art on the walls, short walks, and small rituals that remind her life is still good. She explains why organic choices mattered to her sensitive system and how freezing leftovers curbed flares. And she gets practical about church: believe invisible symptoms, listen to understand, offer specific help, and don’t take cancellations personally.

If you live with chronic illness—or love someone who does—you’ll find language for the lonely parts and tools for the day-to-day: routines that reduce the noise, boundaries that protect energy, and habits that restore dignity. Stay to the end for Myra’s original poem from the darkest stretch of her illness, a quiet testament to despair, rest, and fragile hope. If this conversation resonates, subscribe, leave a review, and share it with someone who need

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Christians With Chronic Illnesses' episodes will release every 2nd and 4th Sunday! We hope to interview more of you as we are able. Your followings, ratings, and subscriptions keep this show going, so THANK YOU! Stay tuned for further announcements.

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Chapters

• 0:00 Warm Welcome And Small Talk
• 3:18 Meet Myra: Work, Art, And Faith
• 9:39 Denominations, Unity, And Mere Christianity
• 16:19 A Walk-With-God Spiritual Life
• 21:59 Onset Of Mysterious Symptoms
• 27:09 Tests, Job Loss, And Hitting A Wall
• 32:39 Searching For Answers And A Dead End
• 35:54 A Dietitian’s Plan And Slow Recovery
• 41:09 Grad School As A Lifeline
• 45:29 Finally: A Doctor Who Listens
• 48:29 Living With Sjögren’s Explained
• 53:09 Flares, Fatigue, And Daily Coping
• 57:39 Routine, Boundaries, And Food Rules
• 1:03:49 Faith Tested And Transformed
• 1:09:29 Honest Prayer, Beauty, And Hope
• 1:14:09 How Churches Can Truly Support
• 1:21:29 Myra’s Poem And Closing Thanks
• 1:31:14 Follow, Rate, Subscribe, And Connect

Transcript

L. A.: 0:34

I'm your Jesus loving and pote host, L. A. Sprague. Welcome to Christians with Chronic Illnesses.

Myra: 0:53

Hi. Hi, how are you? I'm doing pretty good.

L. A.: 1:00

Yeah.

Myra: 1:01

Microphone. Like it's got like a changing on it. That's so fun.

L. A.: 1:06

And like glows colors. That's awesome. Is it working? I don't know. I think so. Hello? That's awesome, dude.

unknown: 1:15

Yeah.

L. A.: 1:15

Hello? Yeah. That's awesome. Your little your little what was it? Instantaneous purchase. Yeah.

Myra: 1:24

In Pulse Buy. Pulse Buy from like three years ago.

L. A.: 1:28

It came into fruition.

Myra: 1:30

Yes. It has its purpose now. I have my microphone.

unknown: 1:34

Me.

Myra: 1:35

It's in Wisconsin. I have I made blueberry iced tea. Wow. Fancy. I found it at a little store. There's like a little pharmacy near me that has some some really nice, interesting peas. So I found it at the pharmacy.

L. A.: 1:54

That's cute. Dude, I made something too. I know. We're so fancy. And I'm like literally. Okay, little ASMR. Um, I literally hear it. I did not hear anything. That's okay. I was trying to give it a lot. I was trying to give it ASMR with the ice.

Myra: 2:15

Yeah, little like clinky clinky. That's okay.

L. A.: 2:18

That's a good sign. Anyways, yeah.

Myra: 2:20

Breakfast and some summer, summer breakfast coffee ASMR, the clinking and the iced coffee.

L. A.: 2:27

I made a decaf mocha. Oh. Mocha. Yeah.

Myra: 2:34

Where jar bottles are. Yes, cheers. I almost poured it out into a mug, but I stuck with the jar. No, I'm glad.

L. A.: 2:44

Yes, this is perfect. Well, thanks so much for interviewing with me. How are you feeling today?

Myra: 2:51

I'm sure I'm a little tired this morning, but generally I'm feeling okay. Yeah. Yeah. I think I think this will be good. I'm gonna try to like bring all of the brain, bring all of the focus.

L. A.: 3:03

Hey, just be yourself. It's perfect.

Myra: 3:07

I get like super spacey sometimes. Yeah.

L. A.: 3:12

So yeah, I totally understand that. Yeah. During an interview I did a few weeks ago, I had to like lay down and just like, I hope they don't think I'm rude. So anyway. So I totally understand that. Okay, so Myra, why don't you tell the audience who you are? Your name. What are you what are you doing?

Myra: 3:35

Hi, I'm Myra. I live in southern Wisconsin. And I work as the director of operations at a small-sized church in the area. I have two cats.

L. A.: 3:51

Hopefully we'll see them in the background today.

Myra: 3:53

I know yeah, I know. We'll see if they come, if they show up. And I love to paint and make art.

L. A.: 4:01

So cool.

Myra: 4:04

Oh thanks.

L. A.: 4:05

It is.

Myra: 4:07

My little hair flip.

L. A.: 4:08

Your art is inspiring.

Myra: 4:10

Thank you.

L. A.: 4:11

Do you have a like art social media thing or at all?

Myra: 4:15

Or no. I've this could have been your chance. I know. Right? This would be my big chance to like get in front of the world. Um, I don't know, maybe I'll do something later. I'll send you a link. Yeah. Yeah, that would be fun. But yeah, I haven't been putting putting stuff up on on social media for a while. And then I decided AI is dumb and I don't want it to chew up and regurgitate my art. Oh. So I can figure out a way to like, I don't know if there's even a way to like post your art online without AI regurgitating it, you know.

L. A.: 4:52

Okay.

Myra: 4:52

So otherwise I like I totally would. Maybe there's a way to do it to see.

L. A.: 4:59

Right. Risky. I hear that. I hear that.

Myra: 5:01

Yeah. I don't want my stuff to be stolen. But also do art in a way that's kind of hard for AI to steal it and use it for anything.

L. A.: 5:09

Yeah. All right. So you're an artist, you create. What else?

Myra: 5:18

I love to create. I love when I have the energy, I love going for walks in the name in nature and spending time there. I really enjoy cooking, again, you know, when I have the energy to make really good food. And I also really like writing poetry. It's been a really nice way to express poetry specifically. My two-dimensional like collage and painting kind of art is good too, but poetry has been a really nice way to express some of the things that I feel through my chronic illness. And as I as I come across new obstacles with my chronic illness, because it seems like you know, it's never really a static thing. There's always new stuff as it conflicts with life. As life changes, the chronic illness like interacts with life in new ways that makes new problems.

L. A.: 6:19

Right. Are you good at like on the spot poetry? Like spontaneous, like drop drop a rhyme, Myra.

Myra: 6:29

Drop bars. I can't drop bars. Um, but I could read a poem and like to hear.

L. A.: 6:38

Hey, maybe later, maybe like after the credit scene, Myra's poem.

Myra: 6:43

Because I have one that I wrote. I actually started writing it very early on in chronic illness, my chronic illness journey. And then, you know, after I kind of fixed my brain a little bit so I could think better, I was able to kind of go back and expand on it and turn it into something a little bit more that just that just had more of me in it.

L. A.: 7:11

Yeah.

Myra: 7:11

It was it started out as just four lines and then I I expanded it into something more.

L. A.: 7:16

Dude, that's so cool. Yeah. Okay, so creative, poetic. You work at a non org, wait, non-profit, a non-org, a non-profit org slash your church. Yeah. That's awesome. Okay, so you go to church. You're Christian. That's fun. Tell us about that.

Myra: 7:41

Getting over this sore throat. Sorry. No, you're good. Trying to not cough into like the mic. Um so yeah, so I work at a small church in the area. It's we it's not really small. We average probably around a hundred people on Sunday mornings, but I mean that kind of depends on your perspective. Some people are used to like, you know, three to five hundred or even like mega churches or whatever. Yeah. Um, but it's kind of big from my perspective because I grew up in small churches of like 30 to 50 people. Yeah, so it's a Christian Reformed church.

L. A.: 9:00

Is that like is that the same as like Reformed Baptists, or is that different?

Myra: 9:33

It's not part of the Baptist tradition at all. It's a it came out of like the Dutch Reformed. Okay. It's the CRC. Actually, most of the denomination is in Canada. And then there's some churches in Wisconsin and Minnesota. Okay. And in Michigan. Actually, no, Michigan is like the hub. And then there's like Wisconsin and like Minnesota a little bit too. Okay. But in America, like, I guess there's I'm learning all of this new. I'm completely new to the denomination. Oh, but they're a little bit more traditional, but they still I don't want to say too much because I feel like I'm gonna misrepresent the denomination just because I I've spent a change for a year.

unknown: 10:21

Right.

Myra: 10:21

And so I I I'm still kind of getting to know things, but I've really been enjoying it. It's been nice.

L. A.: 10:28

Would you say like you affiliate like with that denomination, or is it like right now you're affiliated with a church that's part of that denomination? Or you're not sure? Because I know you said you're new to it.

Myra: 10:38

So yeah, well, I really see myself as kind of working for this church right now. I also attend, I really like the services. And at this point, I'm having trouble telling if that's a denomination thing or if that's a this church and this community kind of thing. Because it not every church is representative of their denomination as a whole, you know. Some are just extra special and awesome, you know. And I haven't really gotten to experience the rest of the denomination in a lot of ways. I think for me, I I grew up a lot in the Baptist church. I also spent a lot of time around the Free Methodist Church, which I actually preferred to my Baptist experience. I really liked a lot of the community and the people and the service style that I found in the Free Methodist church, and like, which is kind of like close to the Nazarene. We also had a Nazarene church around here too, which I really enjoy being a part of. But I don't really I have a lot of trouble affiliating myself with any denomination specifically. Just as C.S. Lewis says, you know, mere Christianity, right? There's there's a Christian heart to every denomination that pulls us together in a way that kind of the edge cases on a denomination just don't understand. Yeah. That we can at the heart of each denomination find these similarities that that bring us together instead of pull us apart. Yeah. And I guess when I show up in a place, regardless of the denomination, that heart that Seals Lewis speaks so well too, I think in his books, this is what I look for more than more than anything. Even if there's a few like edge case beliefs that make me maybe even uncomfortable or confused that I don't understand as a part of their tradition. I just I find I I look for that heart that speaks to mine as a as a Christian, because we're all you know, at the heart of it, striving to be Christ-like.

L. A.: 13:02

Right, right. Trying to love the Lord. Yeah, yeah, yeah. That's something I've always found so like both uh bewildering and annoying and like frustrating is that like genuine there are genuine Christians in every single denomination, and even I would say outside of denomination. And it's so interesting because it's like, goodness, like, you know, the same Holy Spirit is in all of us. And but what frustrates me is that like, why do we come to dish different conclusions? Like when we read the Bible, like, I just wish it were more clear. But I think God like has a purpose for our confusion. I think He has a purpose for our misunderstanding, and a lot of it too is probably just that we're human, right? Like our own biases are gonna go into it, and like, but that's always like frustrated me, but also like it's kind of beautiful too, like we're unified, but not like uniform, you know.

Myra: 13:59

So right, yeah, because like I certainly there are prejudices and you know angers and frustrations that go into all of it. But I think that there's like wonderful diversity of thought that can show up when you have multiple denominations and leaving space for that diversity of thought uh and personality, you know, allowing people to have a space where they can do things a little different and to know that we have a God who's big enough for all of that.

L. A.: 14:34

Yeah. You know, he's not a godstandings.

Myra: 14:38

Yeah, mercy for misunderstandings, but he's a he's a God who's big enough for all of our our differences that we bring to him, you know. He's not a God who needs one kind of worship, he's a God who delights in the diversity of our worship and the differences that we bring to the table, you know.

L. A.: 14:57

Yeah. Amen, Myra. That's good.

unknown: 15:01

Yeah.

L. A.: 15:02

Okay, so preach all day. Right. Okay, so beautiful. So you have a heart for pursuing God in, you know, the base the ways that you know best, and you also have a heart, it seems, for the church or for understanding our human differences and how we're all still a part of God's body. And so I'm wondering as you in your life are striving to know Christ and glorify him and be more like him, so so what does your relationship look like with him now? Because you mentioned, you know, like you went to like a Baptist church mostly and then some like Free Methodist, and that's your you know, like your time in church and how that formed you, but also like in your personal life with your day-to-day, you know, relationship with Jesus, what's that look like? Where are you standing in that like figuring all that out?

Myra: 15:55

Yeah, it I mean it's kind of trying to figure out where to start. That's okay.

L. A.: 16:14

That's a wild concept.

Myra: 16:15

Yeah, I know you can take your time with something like that. There's a bug. Sorry. I I've never been I I'm a pretty a little disorganized in my personal life.

L. A.: 16:38

You're an artiste.

Myra: 16:40

I know, I'm an artist. I've never been great at like going through Bible study books or holding myself to regular schedules of prayer, even or reading my Bible as regularly as I should, though I do read it, you know, mostly by listening to it, you know. Nice. But I love like just the feeling of walking with God and this awareness that he is always by my side, and more than and just this keen awareness that every thought in my head is something that he is also aware of. Yeah. He knew before you did, yeah, he knew before I did that I can that I am that I am there before him, you know, and that intimacy of my very soul just being open to him. Yeah. And that in any moment I turn to him with my concerns, with my joys, with the beautiful flowers, with my tears, with the joys that I get from having my cats and the wonder of where he's brought me in my life. And I like to sit and like reminisce with him about all of the places that we walked through together, the opportunities that have opened up for me in just strange and specific ways that lead me on a path towards towards where I am right now. I see him as a wonderful, strange friend creator. You know, I connect with him a lot through creating and stuff as well. And not only, you know seeing him as a creator as a peer, but knowing that he is my creator and then experiencing that same joy in the things that I make. I don't know, it's it's hard to it's hard to fully describe. Yeah.

L. A.: 19:34

Yeah. Sounds like your relationship with him is very experiential, very like walking with him and yeah.

Myra: 19:42

Yeah, very experiential, very day-to-day, just and in fellowship too. I love being around other Christians and experiencing God's like their perspective on God and the way they see him and stuff. Uh it's it's really wonderful to see have those kind of eye-opening moments where I sit and I talk and I speak with someone I know is just walk their whole life with God and and they just have like such a wonderful piece to share. Yeah. Uh it's really beautiful.

L. A.: 20:21

Oh, yeah, that's so sweet. Yeah. Thank you. I love I love that you you love just like walking with him, and that a big way that you bond with him is like being like him, creating as he created. That's so cool. That's very, very neat. Yeah. So it appears that this this God, Jesus Christ, who you walk with, has I don't know, deemed it, wrote it in your book of life that you would develop a chronic illness. Yes. Plot twist. Right? Oh, tell me the plot twist. So many Lord, the million, you're millions and millions of plot twists. So tell us about that. Tell us what's going on. What do you diagnose with? Yeah. Oh, you're good.

Myra: 21:17

I'm very sorry. You're also getting a lot of vocal fry from me. Very sorry about. We're trying to hydrate.

L. A.: 21:25

That's okay. Drink all you need to.

Myra: 21:28

I had COVID over a month ago, and then

L. A.: 21:31

Still, you know. Boo. Yeah. Sorry.

Myra: 21:36

Ooh, COVID.

L. A.: 21:41

Well, I'm glad you're alright. Besides your vocal front.

Myra: 21:44

I'm alright. I certainly got out of it better than most people do. Oh.

L. A.: 21:48

So better than many people do.

Myra: 21:50

Yeah. I don't know about the percentage. Um, yeah, so chronic illness. So that journey started for me, or at least I was kind of more aware of that part of my journey about five years ago in 2020. Actually, it really kind of started in 2019 when I in late summer I kind of became aware that things just didn't feel right. I was more tired than I felt like I should be. I was really nauseous all the time. I was feeling dizzy and disoriented. A lot of just confusion about like where I was, my thoughts, how things were going. So there were a lot of different levels. There was very much like a physical and there was kind of um a mental aspect to it. And late in November of that year, I was actually in Canada. I was studying abroad in Canada. It was my senior year, and I was just finishing up my study abroad for the fall semester in November, and I it was like I felt a switch go. And suddenly the nausea cranked up to a hundred, and food was painful in my body, and it was really hard to eat. Wow. And I started, I made a habit of making myself vomit to try to cope with how much that it hurt. But from that point on, the end of November of that year, it just continued to get worse and worse and worse. It was sort of the beginning point that I kind of see. So I made it home, you know, and then everything fell apart in the rest of the world as well. Australia was on fire. And so through January and February and March, I had as many doctors' appointments as I could squeeze in. I got a colonoscopy, I got an endoscopy, I did a thing where I had to eat radioactive scrambled eggs. Whoa. I know it was really weird, but I had to eat them and then sit in this room for about half an hour, an hour, and then they would come and take x-ray image of images of me every so often to see how it was progressing through my digestive tract. Because I know, but like we couldn't figure out why it was so painful for me to eat. But apparently everything was fine. Well, and this is right, a lot of people with chronic illness will relate to this. You you go through all the tests and tests and tests and tests, and the doctor's like, oh, nothing's wrong. The test results say that you're doing great. So I don't know what you're complaining about. I mean, they don't say that, but that feels implied. Yeah. Like the doctor would never say that. And then you get passed along to the next test if they're kind, and if they're just kind of getting a paycheck, they kind of leave you hanging.

Speaker 1: 25:32

Yep.

Myra: 25:34

So I I did that for a while until all of the hospitals kind of shut down and were exclusively focused on uh, you know, COVID, because that was a thing. And I I worked at Target sanitizing carts. You're welcome. But after a while, I had to stop. It was turned out to just be too much standing. I also worked at cash register. And after a while, I remember that specifically that there was a day where I was standing on my cash re cash register waiting for customers on like a Thursday at mid-afternoon. And I had my arms down and my elbows locked on the counter, and I was like leaning on them because I was so weak that I couldn't stand, and I was having trouble like connecting in my head what was going on. I was really kind of disoriented and exhausted, probably disoriented because I was exhausted. And this woman who was at the other cash register looks over at me and she's like, Are you okay? And I was like, I just having trouble standing, like it was no big deal. And she was like, Go home. There's no customers. We're in the middle of a pandemic, in the middle of the week on a Thursday. We're not gonna get a customer rush. And I was like, okay, let's go. So I left and went home, and that was kind of the beginning of me realizing I needed to quit my job. Yeah. It was time. I I I cut back hours first, and then I was like, no, I just needed to be done with this. Yeah. So I quit the job. Fortunately, I was staying with my parents at the time, so I had support. Yeah. But then I just kind of dedicated myself full time to figuring out what was wrong with my body. I tried several different diets. Uh, we did, I did like a FODMAP diet for a while and it didn't really have any effect. And I did an elimination diet for a while. I don't know if you're familiar with those at all. FODMAP is specifically for it's for a specific kind of chronic illness, and if it had worked, it would have kind of shown, you know.

L. A.: 28:13

Yeah.

Myra: 28:14

There would have been a clear answer then. Right. And an elimination diet is essentially where you remove everything food-wise, and you spend three days drinking liquid and broths and smoking. Okay. Very basic, boring food. And then you slowly add things back in. And then if you react badly to one of those things, then you know that it's an allergy or a sensitivity, at least, even if it's something that wouldn't show up on an allergy test. Maybe you just have trouble digesting it or something. But that really didn't do a whole lot for me either, unfortunately. And by that time, you know, we were able to get doctor's appointments again. And part of the problem that I'd had at that point is that my primary doctor was refusing to give me the blood tests I need to prove that I had a chronic illness, an autoimmune disorder specifically. Because I had just had those tests the year prior, looking at antibodies and all that kind of stuff. And I was like, well, clearly something has changed. Yeah. You know, I think this is it, because there was such a huge family history, and she just wouldn't do it. So I ended up changing primary doctors, and my new primary allowed me to get the tests. And that kind of I know thank God. I know. It's like it could have been so easy. I don't know why she was dragging her feet about it. Wow. But I finally got those tests, and I was able to go in to see a rheumatologist because I couldn't really get an appointment with a rheumatologist unless I had the confirmed positive test, you know. And I think that was just something to do with my insurance or whatever. Because I know it doesn't work that way for everyone. And honestly, I had put so much effort in, I was so excited. I was like, I'm gonna get access to medications and opportunities that like therapies or whatever that could help me cope with the situation. And I got in there to my rheumatologist, and he had nothing for me or very little for me. He prescribed me hydroxychloroquine, he didn't do any more tests to see if there were secondary issues going on, and said that the the hydroxychloroquine might help me in three to four months. And it was honestly the most horrible thing. It was just it was just horrible. I'd banked so much on this, I'd put so much effort, I'd spent the entire year trying to get to this point where I could find some answers. And the person who was supposed to give me the answers had none for me.

L. A.: 31:34

Yeah, very disheartening.

Myra: 31:36

Yeah, very disheartening. And at the rate at which I was falling apart and losing my faculties and my strength, we started having really serious conversation about long-term disability. And me and my parents did. Yeah. They were unsure how long I was going to last in a lot of ways. That'd be so scary. Yeah, it was really scary. I was very depressed, so depressed. And I was getting more and more tired. I was sleeping about 17 hours out of 24, but it wasn't good sleep, you know. I was very restless and, you know, that sick kind of sleep that's so frustrating. And so I kind of pulled in, I guess, a Hail Mary for the colloquialism. Um I knew of this woman who was a dietitian. I had heard about her through other like church friends and stuff. And my older sister, who also had a chronic illness, had uh seen her for a while. And she kind of specialized specialized in helping people with mystery chronic illnesses that you know no one else could really help. Yeah. And I was like, that's me. Um, and so many other people, right? Yeah. Yeah.

L. A.: 33:29

If you're listening, you may need help. This is a sign.

Myra: 33:37

So I went to see her. She took one look at me and was like, you might be the worst patient I've ever had walk in here. Thanks. But yeah, but she's like, but hope is not lost. If you are ready to work incredibly hard, we can do this.

unknown: 33:59

Dang.

Myra: 33:59

And I was like, I am out of options and I don't want to die. So I that's what I did. January at the beginning of 2021, I dove into the what she could offer me because there just there wasn't really anything else. And so my life turned into maintaining an incredibly strict diet and just lifestyle regimen around what kind of what kind of and how much physical activity I did, how much food I ate, when I ate it, what kind of food I ate. And then I would get plans for about 10 weeks. It'd last for a 10-week period, and then I'd reconnect with her, and we'd look at blood work, and uh she would observe me in other ways. We would do some medical massage work, and then she'd take time, write up a new plan with new nutritional value, and then I would do that for the next 10 weeks. So the idea was that it's a combination of the medical massage that kind of allowed your body to receive the nutrition, and then a custom-made nutrition packet that gave your body what it needed so that things could hopefully get better. And they did very, very slowly.

L. A.: 35:35

Wow.

Myra: 35:37

The while my rapid decline started to grind to a halt, and I kind of held in place for a while, and then things started climbing up. And I I I gave myself I gave myself a carrot at the end of the stick at that time. I was like, I'm gonna I'm gonna do this diet for now, but I need I need some kind of incentive because yeah, some reward. Yeah, right. The diet was gonna isolate me a lot. And my chronic illness was isolating me a lot. And so I applied to grad school, which to some people might sound like a very odd, an odd reward, right? But it meant connecting with other people and it meant giving new purpose to my life. It meant that I could redirect and find a new place for myself in the world, a sort of a rebirth kind of thing. I was I was coming back, I was finding my life again. It was it was really terrifying and exciting and painful experience, and there were a lot of highs and lows. It certainly wasn't a direct upward, like everything got better each day. I had a lot of you know downward spirals still, but I kept going up and up and up in the long term, even if in the short term things got really painful and frustrating. I found ways to remake myself through a new education, through a new lifestyle, through renewing my understanding of of where I was in the world and what it felt like God's plan for me was. And I've I've kind of stayed with that ever since. And I actually I'm still doing it today. Yeah, it's not done. And it might not be for a long time, but I still see her every 10 weeks or so. Wow. And and and I move forward from there. And I've been able now to get new. I mean, I've seen five rheumatologists, including that first one, and I finally just found one that will listen to me. Yeah, it's really exciting. So I'm still like doing all of that stuff, yeah, because it's important.

L. A.: 38:31

What five years in? You just found a rheumatologist that'll listen. Wow.

Myra: 38:37

If I had just sat around waiting for or trying to like switch through rheumatologists, I'd yeah, I'd yeah, yeah.

L. A.: 38:47

So what did you end up being diagnosed with?

Myra: 38:51

Showgrins.

L. A.: 38:52

Showgrins.

Myra: 38:54

Yeah. In some ways, almost to me, it feels strange that that's all I was diagnosed with. I know chogrins can really affect some people very badly. Yeah. But I don't know if I've ever heard of anyone affected quite as much as you. Yeah, as bad as mine.

L. A.: 39:19

Yeah.

Myra: 39:20

Um, but I I mean, just snooping around the internet on my own, I can't really find anything that matches what I experienced. And now that I've improved so much, I don't know if I'll ever find out what happened really, because you can't I can't be observed in that state anymore. Because I it's been probably two years since I felt that bad. That's awesome. Exciting. Yeah, so thank god Myra. Because I've been for almost about five yeah, yeah.

L. A.: 40:06

So so at its worst, okay. Well, maybe explain a little what is showgrin's, like what what is it in your body? Yeah, and then how is that what are the symptoms?

Myra: 40:18

So chogrin's affects your lymphatic system, which is immune stuff, but also how your body manages all the fluids in it. It's pretty important. We're made up of how much percentage of water? A lot. Like what between 65 and 70 percent.

L. A.: 40:38

It's a lot.

Myra: 40:40

A lot. Um it's important. Yeah. It's it does a lot for you. It all of the fluids in your body are how you get nutrition to the different parts of you. And yeah, that you know, so it can affect your blood circulation, you can have a lot of trouble managing your body temperature, either being too hot, too cold, um, your mouth dries out really easily. Which can be really bad for your teeth.

L. A.: 41:08

Speaking of right, right. Drink break.

Myra: 41:15

Sinuses, ears, eyes, all of those different all the different face holes. They interact with the world in a way that different other parts of your body don't, so they can dry out more easily. But yeah. And well, and interestingly, I mean, because autoimmunity is usually your immune system attacking you. A different organ, right? Like lupus is like skin and kidneys are like independent, like usually there's a the specific ordering organ or whatever that tends to control it. But chogrin's attacking the lymphatic system, which does the fluids, but also is kind of a part of your immune system. It's just your immune system like punching literally punching itself in the face. Which I always found a strange dark humor in. It's literally like stop hitting yourself. But why are you hitting yourself yourself the more agitated your immune system becomes and so the more it's going to hit itself and it's just like a never ending party.

L. A.: 42:35

Yeah.

unknown: 42:35

Party.

Myra: 42:36

At least that's the way I saw it. If there are any doctors out there, please correct me.

L. A.: 42:41

But if there are any doctors out there, you should let me know if you want to talk.

unknown: 42:46

Yeah.

Myra: 42:47

Get me up. Oh yeah. Because that's just my extrapolations from you know greeting.

L. A.: 42:56

Yeah. I know you I know you also mentioned like issues with like digesting and weakness.

Myra: 43:05

Yeah.

L. A.: 43:05

Wow.

Myra: 43:06

Yeah so those are kind of the mystery parts of all of this. I you know from time to time I have a lot of trouble walking randomly. Sometimes I'll just fall over out of the blue. But it's not quite like a pot thing. It's not very freaking it will usually come with like a whole episode of like issues. Yeah. There seems to be a connection between certain mental health problems and and yeah so it's it's interesting.

L. A.: 43:39

Have you done much research on how the the vagus nerve is connected to the brain and the body and how mental health affects physical health there we've done a lot of research I know that there's a lot of stuff coming out right now about that.

Myra: 43:56

I feel like I'm like right on the edge of medical science that's well and things like how things like emotional trauma and different experiences can change your DNA even.

L. A.: 44:11

Yeah so cool.

Myra: 44:13

And so bad but cool so cool bad but cool I mean yeah bad strange and it almost yeah it it totally reframes so many things in life for me. I I'm glad that medical science is kind of finally getting on this train but this idea that the line between the physical and the non-physical as who we are isn't as clear as we may have liked to think especially in Western cultures and now that we have scientific proof for that I think is fascinating. And it makes sense you know why a lot of people with chronic illness end up turning to alternative medicine or or more Eastern medicine and finding a lot of really good results because I I think especially for chronic illness and stuff there can be a lot of emotional impacts to that have you have you read the the body keeps what is it the body keeps the screen keeps the score yeah the body keeps score that's what it's called that's the one that everyone throws around all the time right um about these kinds of things yeah um that the idea that you these these things come with you if you don't find a way to to handle them.

L. A.: 45:50

Yeah you know absolutely okay so you said that you've kind of found yourself again you've kind of found life again you're working what a full-time job at a church incredible I'm so excited really incredible you have you finished your master's or you're doing your masters yeah I finished my masters you finished your master's so cool what so for those right now suffering with Sogrins you know maybe they're at their beginning phase maybe they don't even know they're having it but they really identify with a lot of the symptoms you expressed or maybe they're just in the midst of like the hardness of it so you talked about how you went to like what was she you said a dietitian who specified in like kind of out their chronic illnesses. Yeah. But a lot of people you know maybe can't afford that.

Myra: 46:43

So I don't know like what expensive oh my gosh so what do you feel oh sorry go ahead I was just gonna say a lot of my student loans went straight into managing this there's no way I could have afforded it when it first started partially because around that time I was you know funny story they skimped on my student loans initially for some reason I got I was given like a student loan package that an undergrad student would get oh which is obviously not enough for grad school at a master's they charge you like double and I complained a lot I just kept sending them emails and they responded like everything's fine and I'm like no not everything is fine give me my money and then miraculously they just you know gave me the money without saying anything and it ended up being a little bit extra I think just to keep me make me stop emailing them. That's awesome uh and so all of that went into medical health yeah yeah wow anyway that's a fun little side story so if you're if you don't have enough money for medical bills everyone go to grad school no no no wait wait there has to be other resources disclaimer I do not endorse this message I'm glad that worked for you I'm glad that worked for you oh it kind of just ended up work I certainly did not do it on purpose but like I just kind of ended up working out right um but yeah so if I mean having a personalized dietitian or dietitian create personalized plans for you is very expensive. Yeah the woman I worked with was is also a Christian and she runs her situation more like a ministry and gave me an obscene discount as well which was really helpful. But I think a lot of what helped me in what she offered was regularity in my life she uh things like regular bedtime bedtime waking up meal time as being super regular um you know the amount of fluids that I drank all of those kinds of things were just incredibly regulated and I think having that regular pattern in my life yeah which was hard I had to put a lot of effort into making it happen but once I got it to a rhythm it I was able to flourish around the skin. Wow so I think you have to have a have a lot of boundaries too yeah creating those boundaries wow I cannot ex tell you how many things I missed out on. I missed out on friends I've lost friends because I had to prioritize my health and they did not understand. Yeah I have missed out on social opportunities. I had to stop going to church for a couple years because I didn't have the energy for it I had to like grind everything else in my life ground to a halt so that I could stabilize your stabilize my situation. Yeah wow and then it can just it can do it can do a lot for you it's it's hard and it seems on the surface it seems really small but I think it can be very helpful.

L. A.: 50:33

Yeah. So tell tell us about what has been the most I mean I know you said that with your with the kind of diet every 10 weeks you kind of switch things up but what do you feel has been the most helpful kind of rule of thumb with food? Like are there more helpful foods to eat? Are there foods that are more triggering?

Myra: 50:53

Yeah um yeah um organic is worth it I think I know a lot of people will say that it doesn't really matter but if you have a really sensitive body a really sensitive system I would say organic is worth it. I am really careful about washing foods that come in and I variety is important in the foods that I do eat and making sure that I'm not eating foods that are anywhere near spoiling. Okay. Right if you have like a stronger system and a stronger body maybe you can kind of push those boundaries but like I can't let anything sit in my fridge for longer after it's been I'm not talking like fruits and veggies but like if I make a meal and I want leftovers it has to go in the freezer. I can't let it sit in the fridge for more than 12 hours. Wow yeah I had to freeze it and nothing sits in the freezer for more than a week. Wow usually there are a few things that I leave like meats and stuff you know sometimes will sit in there. I also don't generally buy things from the store that have been pre-made. And this is the hard part because when you're sick you don't have energy to make you want to buy the easy thing right but if I I found that especially a lot of health foods will have such long ingredient lists and stuff and I don't know how they cared for those ingredients before they made the thing I don't know how long this box of crackers has been like hanging out in a warehouse and stuff. So instead of eating like a box of crackers I will buy like almonds because as soon as you take something and you grind it up and you process it it becomes more susceptible to things like molds and spoiling and stuff especially like almonds or or other kinds of nuts once you grind those up they're just on like micro level they're just very susceptible so a lot of like very raw whole food I guess kind of is what I carry with my diet.

L. A.: 53:12

Can you give like what's one of your staple meals one or two so I do fish a lot I have salmon.

Myra: 53:23

Making homemade pesto is actually really easy really treat yeah this is my treat meal. So I'll have like the pine nuts from the store buy the basil and the garlic and and if you want you can put some parmesan in I tend to avoid cheese not entirely but I just don't eat a lot of it put it in a food processor with olive oil and just grind it and it's done. And then I slap a piece of salmon and put it in the oven for 20 minutes. And it's amazing with rice or mashed potatoes or whatever. Okay. And it tastes really good. Awesome salt in there too just to accent the flavor. But it's a really good really quick meal. Yeah let me think what else I do I do pasta that's a really good easy one I have a specific brand of pasta sauce that I buy.

L. A.: 54:18

Do you know what it is?

Myra: 54:20

I could go grab a jar right now but it's it's in a glass jar. I buy it in a glass jar. This is something else fun if you have a sensitive system you might be reactive to things in metal cans. Wow because yeah so food that goes in a metal can this is something that's a big thing for me the metal can gets lined with a substance I'm not really sure what it is but it helps the food not stick to the the metal can and it helps it come out real easy. So you can just kind of dump it out. However it I mean it's technically safe you know it's not like against the FDA or anything but if you if you put tomatoes which are very acidic in that metal can with that substance it can start to pull it off the sides and get mixed in with the tomatoes. Yeah and then you eat a lot of it so you can actually look it up canned tomatoes tomatoes in a metal can is one of the most toxic things you can buy off the shelf at a grocery store. Wow so I always buy anything tomato based in a in a glass jar. It's a little more expensive which is hard but I try to like make it last yeah um but it makes for such an easy meal you know if I get my rice noodles because rice is something unlike nuts rice is something that stays stable as you grind it. Okay. For like flour and stuff it stays stable longer. So yeah diet tips but I I avoid like a lot of the big ones like no gluten I don't do any caffeine I do drink green tea but green tea doesn't really have a whole lot in it. Most of the tea I drink is herbal right and I generally do no sugar okay although like sugars in fruits and vegetables are right and people people underestimate apple juice like I have some really great muffins that I make and I just put apple juice in it and they're delightful.

L. A.: 56:41

Wow yeah like you don't America I'm speaking to right now you don't need sugar everyone tells you you need sugar and you don't it's a lie it's there's so many sweet things in the world that aren't sugar don't need sugar cane hear the America all of America hear me oh man okay so then when you are having a a flare up because I presume you still have them you know like you're you know often I had one about a month ago yeah horrible yeah and you know it seems that you have some ongoing symptoms like fatigue I know that you're very protective of your time so what do you do when you're having flare ups or major fatigue to feel better well I love having my cats around because we take naps together while we're napping buddies.

Myra: 57:47

That's cute I love to lay in my bed and I have there's a window in there and I put a lot of some of this isn't stuff I do in the moment. It's things that I put effort into over the years. Okay. I put a lot of effort into making my space a one that I can delight in so that when I'm stuck at home, you know it's something that I can find beautiful even if I feel horrible and disgusting and gross. I can lay in my bedroom and I have this painting on the wall next to my bed that I can look at and I have my cats and I have books next to my bed and on my phone I have an app with like funny webcomics and stuff that I read. So I like I like reading those a lot when I'm not feeling well and so I'll make sure I have my water or tea and lay down and rest as best I can you know for as long as I can yeah okay sometimes that means you know taking time off of work which I know is hard and isn't an option for everyone I happen to be a person who doesn't have kids uh and I don't have a spouse or or anything so I don't have anyone that I have to take care of but I also don't have anyone you know immediately on site who's taking care of me so there's like a plus and to that. Right for sure. Um however my church family has been really awesome about you know text us so we can pick up groceries for you or whatever seriously dude yeah it's really awesome we have a couple nurses in the congregation which and so like they get it they're very keenly aware of what I how I'm looking on Sunday morning which is just really sweet. I mean part of it helps that I I've had a few like episodes and like breakdowns on Sunday morning. So it's very much like pay attention everyone I'm gonna fall over here right now and yeah so yeah but they they've been really a blessing and my parents as well I don't live too far away from my parents uh which I did by design because I'm like I'm gonna need some backup and they've been they've been great too that's awesome offering help when they can so it sounds like having social support is very important. Oh my goodness yes it's hard to build up but it is it's very important.

L. A.: 1:00:33

Yeah I'm so glad you're able to find a supportive church that's really really beautiful.

Speaker 1: 1:00:40

It's hard.

L. A.: 1:00:41

Yeah so now we've heard about your relationship with Christ we've learned that that's a very experiential thing for you and we've also heard a bit about your journey what it was like to get diagnosed and what's helping and so now I'm curious with your chronic illness being I don't know if you would agree but probably a big part of your life and with your and with your faith in Jesus being a pretty big part of your life I'm wondering how those have intermingled. Yeah um has your illness affected your relationship with Jesus and vice versa has your relationship with Jesus affected your illness yeah yeah and a uh yeah who

Myra: 1:01:34

Yes. Okay. That's a short answer. I can safely say I've experienced a range of emotion in my relationship with God as I go through this. There's been a lot of anger and confusion. I don't think it's something I've gotten to bring up yet, but in college I study technical theater, which is a very physically intense line of work. You're, you know, all everything is hard in technical theater. Lifting and walking and carrying and moving and pushing and building going on. And I really had felt led to that almost as a mission front for me because I had seen people in theater and technical theater specifically as sort of society's rejects. A lot of people find themselves pushed into the arts and then into theater and stuff as a way to find a purpose and something interesting with their life. People who have very strange minds, you know, that don't fit in an office and don't and aren't always welcome in church. And theater has been, and live performance especially, has been very looked down upon by the church for many years in different ways. And especially women in theater throughout theater history have been on par with like prostitutes. So it was some place and an area that I loved working in, but I was also excited to just get to go and be a kind person and in that area and be a kind Christian to some people who had never met a kind Christian before. I had a lot of interesting discussions with people about that kind of stuff. But then, you know, I right after college, right out of college, I got sick. It was immediate. And in fact, there was overlap, you know. I was just finishing my degree. I barely finished. And there was this confusion in me for a long time that I got, I thought this was a place that I could do good, you know, and represent you and represent the church in a positive way to people who are our neighbors in America, which we like to think of or we tend to assume has been very permeated by Christianity, but people who have been very rejected, you know, and by that culture. And yeah. And that was just a really hard thing to come to terms with because I I had felt pulled in that direction very specifically. Theater was the first place I had an opportunity to step into leadership and really come into my own, too. So there was a lot of like my personal worth that was connected to being in the theater, that like this was a place where I had really grown up and come into my own as a young adult. I had learned what I was really capable of and that I was a strong person. And then my chronic illness came along and it was like, okay, we're gonna test that now. Um and see see what does that really mean to be a strong person, you know. And so I had a lot of I had a lot of anger, I had a lot of grief and sorrow over losing not just something that was my passion, not to dismiss a passion, but something that I had seen as I had felt was God's passion for me. And what I had to sort of come to terms with is that, yeah, maybe God pulled me there, but maybe it wasn't for the reason that I thought. Um I had felt very clear a very clear pull in that direction as when I was looking for colleges. And maybe, maybe just it wasn't for the reason that I thought, because I I started doubting myself. I was like, did I am I just making stuff up? Right. Right. And so I I found that there were new things that I could learn. Like, because you finish college feeling pretty good about yourself, you know. You're like, I learned all of this stuff. I'm so smart, I'm on top of the world, I'm gonna go get that job. Um but I think it was, I mean, the chronic illness was very a very harsh. There's a lot for you to learn, and that the things that I needed to learn weren't something that I could learn in a classroom, and they weren't something I could learn through a mentorship, and it wasn't something I could learn even by going to church, and it wasn't something I could learn, you know, by sitting and like meditating in nature or whatever way you want to learn something. There were lessons I had to learn, and the only way I could learn these things was by experiencing this chronic illness. Wow. And I think as much and as frustrating as all of this has been, I like the person that I am now better than the person I was before. And I don't want to say necessarily that like all of my chronic illness was great, or like it was a good experience, or I'm glad that I got my chronic illness, because I don't know if I can really say that honestly, but I do know that I like myself now. I know so much about myself. I've grown in my patients. I learned how to love myself and take care of myself, which is something I didn't know how to do before. Yeah, yeah. I I learned so much about human biology. I I learned how to rely on other people, how to ask for help. Yikes. Oh my gosh, which is honestly very counter culture. Like we live in a world where being independent is so important. What do you do independently? I learned to find my worth in something that wasn't work. The things that I do with my hands became choir, yeah. The things I do with my hands are not what make me who I am. Wow. I am just me. And I don't need to prove that. I don't need to make I don't need to get gold stars, you know, and A pluses in to know that I am myself. Yeah. And that I am a human being who's worth, who's worth it, who's worth caring for. And to kind of prove that to myself, I think this is really something I had to go through. Yeah. Sadly. But I was in a place where I've I wasn't able to understand that uh at that point in my life. And I feel sad for that past self that she didn't know. But I'm so glad that I know now and that I can kind of reach back to her in the past and let her know you're worth taking care of. I'm worth taking care of. And so is everyone else.

L. A.: 1:10:00

Yeah, you know. Yeah. Wow. So a lot of that you kind of just had to learn through the experience of your chronic illness.

Myra: 1:10:08

Yeah, like you said, very experiential.

L. A.: 1:10:11

Yeah. So it sounds like a lot of like a lot of anger, a lot of confusion, maybe even some self-I don't know if deprecation is the right word, but kind of blaming yourself, doubting yourself. Oh, but then realizing that maybe God was using this to teach you things that you couldn't have learned any other way but to be in it. And now on the outside, I mean you're still in it, right?

Myra: 1:10:38

It's still up here. There's still a lot for me to learn and figure out, but you know, sometimes, I mean, I've in what I said, I focus a lot on like the learning, but sometimes this is just you know what you've been given, and to carry a burden with joy, not happiness, but with joy and humility, understanding that this isn't forever, yeah, that there is a a place for us at God's table, you know. And everything that that table brings with it, you know. What do you mean by that? Like the the new kingdom, the wedding, a new body, uh, you know, connection with God as the Father, the Son, and the Holy Spirit in like the most intimate way that we just can't have now, you know.

L. A.: 1:11:40

Okay, so you talked about you talked about how there is that future kingdom to come, there's that future intimate relationship with God that we'll get to have that we don't have now, or at least not to the fullness. So I'm wondering right now as you live, you know, your human life, like here on earth, in an imperfect and fallen world, what do you think like I'm not so sure I know how to ask this question, but but how how do you personally like I don't know if enhance that relationship with God is the right wording, but when you've when you've struggled with him, when you've been angry with him, like I don't know, what maybe what would be your advice to Christians with chronic illnesses listening who are trying to, you know, maybe wrestle with God in their relationship with him. They want to love him, they want to be like him, but they're really struggling to understand him with their chronic illness. So I don't know, how would you just encourage Christians to relate to God? Because there's a lot of perspectives on like, well, you shouldn't be angry there with God. There's a lot of perspectives of like, you know, you can you can always be angry with God. Like, I don't know, like what what's your take on that, or what would be your advice?

Speaker 1: 1:13:06

Yeah, yeah.

Myra: 1:13:08

Well, I think I think that God wants to have your most honest self before him. Whatever, whoever, wherever you are, to be able to bring that to him is our adoptive right through Jesus. I think that that's kind of part of the whole package deal. And the idea that we are working towards that place someday, you know, of the kingdom and being, you know, with him fully in that capacity is something that we should strive for. It's not something to just wait for, but something to anticipate and reach out for and to desire it, you know. And you know we it's a lot of complex theology that my brain just sped through. Uh I'm gonna table that fun. I went through a couple of years that were really dark, like that. And I I still revisit that from time to time. And like I talked about, you know, food and stuff, it's important to take to take care of your your physical body, it's important to find ways to take care of your spiritual and and mental health as well. And those two can overlap a lot in some ways. But in those moments where I was confused, I think allowing myself to just feel that anger towards God and that frustration and stuff meant I was still talking to him. If you don't, if all you're feeling is anger towards God and you allow that to stop the conversation, then you're not in conversation with him anymore. And you're you're you're starving yourself in a lot of ways, I think it can be spiritually painful, and life comes with ups and downs, and your spiritual life reflects that in a lot of ways, not necessarily as a direct replication of your the ups and downs of your physical life. Because sometimes people who are down, they feel God the most in those places. Sometimes when we're down, we feel like God isn't there at all. Um, but there is there is a certain kind of reflection between your spiritual and physical life that you can see. And it's hard to explain exactly. But in those moments when you don't know what's going on around you, no matter what your feeling is toward God, to know that he's still there, you know, and that you can still bring things to him, no matter what that thing is. Like, yeah, go scream at God. Like you're still having a conversation with God, and that's the point. Okay. Something else that I've found for myself is to keep beauty in my life. What that means can get a little complicated, but like plants have a like have a potted plant around. It's a beautiful thing, right? That also helps with the regularity, right? And you're also caring for something else, and that can reflect towards the care for yourself because plants have to be watered regularly in order to maintain that beauty, and there's a reflection of yourself and watering yourself and the beauty that needs to be maintained there. And sometimes you just need a little extra, you know, with your chronic illness. I also like to have art on my walls, things that I find interesting or beautiful to look at. You know, I like to find beautiful things to do, things like creating gentle walks, you know, because you don't always have energy for it. Very short walks, but just to get out and see the world and see the beautiful things that are around me. Yeah um, even if even if it's just a memory or something that you you can see and you can hold in your mind and remember the the beautiful things in the world, you know, it's so easy to get lost in a dark place and to forget that just because in this moment, because we're so tethered to time, you know, in this moment everything feels dark and horrible. But there are there are beautiful things out there always, yeah, and there always will be. And to know that you're one of them. And even if things aren't working out the way that that you think they should, or that you want them to in this immediate moment, God thinks you're beautiful and wonderful and fantastic.

L. A.: 1:18:52

So that's so cool. So it sounds like being your most honest self with God, because he knows anyway, have that a continual conversation, don't let the anger stop you, and then also focus on the beauty that he's given you in your life, including that's in yourself. Yeah. Yeah. Yeah. I think that's lovely advice. Thank you. So I had I had another question. When we were initially talking, you had said that one of your, if I understood correctly, one of your like desires for the for for your episode of this podcast was to kind of push against the I don't know if you how you put it, something like the narrative of chronically ill people feeling abandoned by the church. So my question for you would be there's a lot of people listening that go to church that are Christians, maybe are pastors, maybe are leaders, maybe just our congregation members, I don't know. And you know, there might be a lot of people that don't understand chronic illness, that have trust issues with it, I'm not sure. Or there might just be people listening because they want to love their Christian friend. So my question for you, Myra, would be in in your mind as a chronically ill Christian, what advice would you give to the church of how to love chronically ill believers well? Or even chronically ill uh unbelievers. Yes, people. Yeah, permanently sick people. How do we how do we how do we fix this problem?

Myra: 1:20:34

Oh man. I think listening to people's stories is important. Listening, yeah, listening is hard, but not just listening to hear, but listening to understand, actively, choosing to to understand and hear and comprehend what a person is going through. I think that's always a good place to start. But I even before that, I think church is a really hard place to bring the broken parts of you or the parts that seem to be broken, the parts that seem to be unacceptable. We live we live in a place where as an adult your job defines you. If you have a chronic illness and you can't work a job, how do you connect with other people? You know, your family is another big definition for people as individuals. If you are too sick and you can't have a family, how do you connect with other people? Those are kind of the problems that I see uh going on. I chronic illness doesn't look bad on the outside always, right? And Jesus talks about judging people based on their heart and by like observation and like being with a person and knowing who they are, right? That's like God's whole thing. He knows you. And as humans, it's really hard for us to know a person. But taking time to know the people around you just off first, you might discover that someone is not doing as well as they appear to be doing. Most people who see me have no idea that day to day I experience really horrible fatigue. I still skip events on the regular that I would love to go to. There's a cute kids play last night I really wanted to go to, but I wasn't feeling well. And if I went, I was going to have serious problems. Yeah. So finding ways to connect with people, talk to them, and hear their story. And then if you find someone in your life in the area who has a chronic illness, just be open to the strangeness. It's a strange and mysterious and peculiar and surprising journey, especially for the person who's sick, but as well for the people around. Yeah. Be ready to ride that with them, you know. Yeah. If they have to keep you at arm's length, don't take it personally. They have stuff that they have to deal with. And in order to be happy, healthy, and functioning, maybe you know, two or three times a year when they connect with you, the rest of the time they have to retreat into a cocoon sometimes. So just be understanding of that. Yeah. This has been a huge mess of verbal vomit. Um, so I guess what I'm trying to say, if we were to summarize, like be aware of the people around you, you know. Uh don't be afraid, you know, to listen to their stories and their experience. Don't ride, don't ride the wave of assumptions. And if someone in your life tells you that they're very sick, believe them. Even if they don't look like it. Just have the decency to believe that they're not doing well.

L. A.: 1:24:59

Yeah.

Myra: 1:24:59

And make yourself available for when they need to ask for help. You know, give them a phone number to text, tell them, have a conversation with them about what you can do that would be helpful in their life. And they might not have an answer for you at that moment, but just saying that and just having that conversation means a whole lot. Yeah, absolutely. Absolutely. Yeah, that's good advice. Hopefully, yeah. Yeah. Hopefully, you can pick through some of that and find a good something to add. That's perfect.

L. A.: 1:25:36

Wow. No, it's beautiful. Well, thank you so much for interviewing. Do you have any last one? I don't know. Do you have any last thing you would like to say? Any final message?

Myra: 1:25:51

Could I read my poem? Yes. Yes. Let me pull it up here. I have it on my phone. So just as a preface, I guess. This is a poem that I started writing in January of twenty twenty one. Right probably at the darkest part of my chronic illness.

L. A.: 1:26:29

Okay.

Myra: 1:26:30

This is at my very sickest I was it non-functional. It was a very, very dark time in my life, probably the darkest to date. I didn't know who I was sort of metaphorically, and also I was having some trouble literally. Yeah. I I was very suicidal. It would look like I would never get better. There was just there was just kind of no help in this place. And I know that there are a lot of people in that place. And I would love if this poem could give voice to what you're feeling. And to know, don't feel like you have to rush to feeling better. Feel you feel horrible, and that's valid, and that's okay. And you don't have to put on a smile for anyone. So this is this present mind. I'm gonna drink some tea before we start.

L. A.: 1:28:10

I'll join you with the water on my side. Okay. Yeah.

Myra: 1:28:14

Okay. Here we go. My clarity washes up at high tide, clinging to the moment. Pointed rocks bite, and brittle plants cut the wind. A hollow serenade to the indifferent waters, here and gone, awake and asleep, in and out. Who will I be when it doesn't return? I remember these pebbles were once mountains. Time's ocean is no friend to them or me. Why? Why must it take myself from me? Yet the tide recedes with relief. I slip away to muddled reverie with no hold on my memory, waiting for the simplicity of evening dreams. For there a shadow tells stories to my grief. For only in my rest will I ever be. For only in my rest I will ever be.

L. A.: 1:29:31

I wanted it to keep going.

Myra: 1:29:33

I know. Maybe we'll write another stanza.

L. A.: 1:29:37

Right. Oh, well, that was beautiful.

Myra: 1:29:40

Thank you.

L. A.: 1:29:41

Yeah. Well, Mara, thanks so much for being willing to be vulnerable and share your story. And I I really, really hope that people listening are encouraged and inspirited in their health journeys and their faith. And I hope you too feel like you have. I hope that you feel seen and encouraged. And I have no doubt that God will use you in all that you're going through.

Myra: 1:30:10

Thank you. It's um you've offered me a wonderful opportunity to speak and to share and to connect with other people, even though they're far away, far beyond the reach of me otherwise. It's really fantastic.

L. A.: 1:30:25

Yeah. Thanks so much, Myra. You're welcome. Thank you for being a part of the Christians with Chronic Illnesses community and for tuning in to our podcast. Please follow, rate, and subscribe on Apple Podcasts, Spotify, and Patreon. You can also follow our socials at CWCI Podcast. If you're interested in sharing your God given story, we'd love for you to email us at cwcipodcast at gmail.com. This podcast cannot substitute for medical help and is purely for encouragement and entertainment. Please see your doctor before trying anything mentioned on the show.