The LYLAS Podcast
The LYLAS Podcast, Season 3, Episode 59, "Grit & Glamour: Fighting an Invisible Illness with Candi Shamblin Arthur"
Have you ever met someone whose resilience in the face of adversity not only defines them but also uplifts those around them? Meet Candi—a beacon of strength, grace, and determination, balancing being a mom, and active community-volunteer, with the reality of battling five autoimmune disorders. Our latest episode introduces you to this remarkable individual, whose story will grip your heart and inspire your spirit. Candi reveals how pageantry became her refuge, a place where camaraderie triumphs and women empower one another amidst life’s relentless demands. Her candid reflection on living with conditions like Crohn’s Disease and Fibromyalgia is a vivid illustration of the grit required to face invisible battles while maintaining a semblance of normalcy.
Please be sure to checkout our website for previous episodes, our psych-approved resource page, and connect with us on social media! All this and more at www.thelylaspodcast.com
Have you ever met someone whose resilience in the face of adversity not only defines them but also uplifts those around them? Meet Candi—a beacon of strength, grace, and determination, balancing being a mom, and active community-volunteer, with the reality of battling five autoimmune disorders. Our latest episode introduces you to this remarkable individual, whose story will grip your heart and inspire your spirit. Candi reveals how pageantry became her refuge, a place where camaraderie triumphs and women empower one another amidst life’s relentless demands. Her candid reflection on living with conditions like Crohn’s Disease and Fibromyalgia is a vivid illustration of the grit required to face invisible battles while maintaining a semblance of normalcy.
Please be sure to checkout our website for previous episodes, our psych-approved resource page, and connect with us on social media! All this and more at www.thelylaspodcast.com
Welcome to LILAS. If you grew up in the 90s, you probably know what that stands for and, by default, this podcast is for you.
Speaker 2:Hey folks, welcome, welcome. We have a special guest, don't we?
Speaker 1:Jen, we do, we're back. It's been a minute since we've had a guest on the podcast, but we're very excited to welcome a guest to the Lila's podcast and. I'm gonna let Sarah tell you a little bit about our guest, because she she knows our guest.
Speaker 2:I do. I have the privilege of knowing our guest and the great honor of it. So Candy and I met maybe like seven or eight years ago I don't even remember how long it's been since our first time that we met and, like all good middle-aged West Virginia women, we met through patent tree right, this is just what we do. I don't know. That's how you make friends.
Speaker 2:We find things that put us in like these positions where we're almost in competition with each other, but it's a beautiful joining of it and we just make it work. And so, candy, whenever you meet her and I think you'll hear it throughout this whole podcast she has an infectious light about her that anyone that is within her presence almost just unknowingly gets sucked into this beautiful aura that she has, and then it just turns into a beautiful friendship, because she's the type of person that, no matter what, is always going to be there and be your cheerleader, be your person, show up, and she does all of it. With her story that we're going to share today, and in knowing how committed she is to her friends and relationships and she still does it is just. I think this is going to be really inspiring. So thank you, handi.
Speaker 3:Now I'm going to have to have a little cry Like that was emotional.
Speaker 2:Oh, I mean, you're great you know, what I think.
Speaker 3:I really think that no, sorry, no, you go ahead. I really think that no, sorry, no, you go ahead. I was just going to touch on where Sarah was talking about middle-aged women in West Virginia making friends through pageantry. I think that it's just that we come to a point where we need something for ourselves, because we're giving to our kids and to our husbands and to our jobs, and so we turn to pageantry because why not? And who doesn't want to get dressed up and play in hair and makeup? And what you don't realize is that you form such strong bonds from that.
Speaker 1:Yeah, I find that a little fascinating about the pageantry world, just from what I've gleaned from what Sarah has told me. But it really is more of like a women supporting women, even though it's a competition. Sarah has met so many friends through pageantry and it just seems like everybody's like cheering for the other gal, if I don't win, I want you to win, or Sarah to win. You know, it just seems to be and it's probably I'm sure there are people that are not lifting other women up, but it just seems the people that I have met through Sarah, through pageantry, everybody seems to really be like a girl's girl, which is kind of surprising to me.
Speaker 3:Yeah, it's a good, a good little gang of females that are all strong minded, and I think that having a bit of competitive nature in you is a healthy thing. So like it's just like a sport, and so it's no different than playing baseball or football. You just do it in six-inch heels and a dress or a bathing suit, or whatever else.
Speaker 1:Hair and makeup. Hair and makeup. Full hair and makeup.
Speaker 2:Yes, yes, all of the things. A costume, who knows? Yeah, who knows Something, something. But I think, yeah, the thing with Candy is just in knowing her for so long and seeing the invisible illness and how it has not affected your vigor but it has transformed your life, and so really wanting to get in. And that's why we want to bring you on, because so many, I think, women, people, humans, have a medical condition that at times is so crippling, but we don't have any idea that it's there by looking at a person or by seeing what they post on social media or whatever else the opportunity is. But it is a invisible illness that changes everything, if you allow it to, I guess, right.
Speaker 3:Right, you pick and choose what you want to let have control of you. So I choose. So I have five autoimmune disorders, um, and they are struggles, but I don't let them be stronger than me. I'm strong willed and I'm not letting something that is trying to kill me on a daily basis have that control over me. It already has control over so much that I can't let it have control over my attitude or my personality or what I do.
Speaker 1:So can we give some context here, Like what do you feel comfortable sharing what those diagnoses are?
Speaker 3:Oh yeah, definitely so, yeah. So in 2007, I started getting really sick, like I was having some stomach issues. It literally felt like somebody was shoving a fork in my intestines and twisting like I would be balled over in pain, and it took years because so I have Crohn's that's the first one and that's what it was and we couldn't get it diagnosed right away, which is hard for most Crohn's patients, because if it's not flared up, it's harder to find, and what makes mine harder is that it's in my ilium and that is where your large and your small intestines meet, and so getting there through a colonoscopy or an endoscopy is hard because of, like, the location the location of it, yeah of it. Yeah, well, during that time uh, from 2007 up until I would say 2017 um, I started having like joint pain, really bad joint pain, like stiffness, and so I was diagnosed with fibromyalgia and that feels like somebody has beat you with a ball bat. It is horrible. Um, on top of that, they have found that my hips are filled with arthritis early onset arthritis. So my hips look like someone who's 95 because of the arthritis.
Speaker 3:So we find out all of this and last January, I started feeling bad, so I had never been on a medication for my Crohn's because I would go into remission for long periods of time and, you like, it would just flare up for just a short period, maybe like a week, maybe less, I mean, maybe just a few days and so like, by the time that they would go into scope me it would be calmed back down so they could see it on a ct. But they could never reach it. So it's just been time after time after time trying to like get to that place. Well, last january I started feeling really down, like my body just felt really tired and run down. I thought I was probably just going into like a fibromyalgia flare up.
Speaker 3:I started having some eye issues which was odd, like things that I could see normally at work. I would have to literally get right up on top of to like notice and I still just kind of played that off as well. I'm older. Maybe that's what happens after 40. You know, your eyes go out and you just can't see stuff anymore yeah.
Speaker 3:I mean it was easy just to blame it on being over 40. For sure. And so in March last year I had a really bad flare-up. We had traveled to Costa Rica and came back and three days later I started getting sick. And when I get sick, like when I have a Crohn's flare up, it'll start out really bad, like with the pain, and then it'll go to like throwing up.
Speaker 3:I don't know if you all want to know this Okay, so I'll start throwing up and then I won't be able to stop and so my body will then start having like contractions, my stomach will like, it feels like I'm in full blown labor and by the time that I sat at home with it for a few days because I didn't want to go to the hospital, I knew that if I went to the hospital they would keep me because it was pretty bad that time. It was pretty bad that time and um, so finally I gave in and I was like, okay, we got to go and of course they kept me. They, um, they did a CT. They could see the flare up was really bad. I was extremely dehydrated Um, which is another thing with Crohn's like you stay dehydrated, which is another thing with Crohn's like you stay dehydrated. My white count was extremely elevated which is another thing with Crohn's because of the inflammation, and I started seeing a new gastrologist. So that gastrologist is like, okay, here's, let's get at you on a plan so that we can get things figured out and we can, you know, get you feeling better. And I was like that's great.
Speaker 3:So they put me on a medication, um, that a lot of people do great with. Come to find out. I am extremely allergic to um. You have to take it for three months before it's like fully in your system. Well, with each dose, I was getting sicker to the point where I couldn't eat. I was eating like a protein bar or a protein shake a day. It caused me to have side effects that they are not aware of. It was not something that my Humira nurse was like oh, this is something we see all the time. They were extremely rare side effects.
Speaker 3:I developed my fifth autoimmune disorder from it, which is vasculitis, and that is where your immune system attacks your blood vessels and ruptures them. So then, that puts you at high risk for hemorrhaging, blood clots, stroke, aneurysms. And at that point I'm calling my doctor because a spot had come up on me that looked like a bruise or like similar to a bruise. It was. I mean, it was a decent spot, and this was about June. At this point, and my doctor was like no, you just need to take the medicine, we'll give you a call back. And I was like no, something's wrong, something is really wrong and we have to figure out what's going on. And they're like well, we'll call you back. That was on a Wednesday.
Speaker 3:I talked to the Humira nurse Thursday morning. She's like no, that's not from the Humira, that's not a side morning. She's like, no, that's not from the Humira. Like that's not, that's not a side effect. Like it's not, it must just be a bruise. And I'm like it's definitely not a bruise. I have no energy. I don't leave my house. I'm literally in bed for a week at a time. Something's not right.
Speaker 3:So I seen my family doctor just for a follow-up, because it was already scheduled. I went in and he seen it and right away he was like, yeah, you got to be seen, you need to go somewhere and be seen. And I'm like like where? He's like like you need to go to Cleveland or Duke because I think this is a vascular issue. He's like, and I was like, oh, ok, and I said so, like when do I need to go? You know, should I like call, make an appointment? He's like, no, you need to drive now and go to the ER. Wow.
Speaker 3:And so I called my husband up and I said listen, doc says we got to go, we got to go now. And he said well, I'm three hours from home, we'll go to Cleveland. That's four hours from home. So he drives the three hours home, picks me up, we drive to Cleveland, go to the ER. We sit in that ER all night because if you know anything about Cleveland Clinic, it is a whole world in itself. There was like 75 people in front of me in the ER and the doctor sees me there the ER doctor and he's like, yeah, you have vasculitis, you have to stop the Humira immediately. And I was like, okay, cool, and that's I mean. Since then, I've now got a team with Cleveland and I see five different people through Cleveland. I have a whole team of great doctors and they're working a plan to get me healthy and I just started infusions with a new medication and that's that's. That's what's going on. It's a lot, it's a lot, it's a lot and my body hates me.
Speaker 1:Yeah, my body hates me. Well, and it's just. I mean I don't want to get off topic and talk about the medical profession, but it's. It's frustrating Like all the things. Just listening to your story, I can't imagine A the anxiety that you probably had going through each of those diagnoses and then, just when you're saying no, something's wrong, like just getting somebody to listen to you, I feel like is frustrating. You know like no, I know my body, something's wrong. And here you've got-.
Speaker 3:Yeah, it's really difficult, I mean- yeah, go ahead. Sorry, I didn't mean to cut you off no, I was just gonna say yeah, they just basically like. The doctor I had here was just like no, you're crazy, like you have to stay on the medication and I'm like, no, it's not working, dude, something's not right and like what if you would have stayed on that medication.
Speaker 1:You know like what could have killed yeah.
Speaker 1:Yeah. So I mean no hate, no shade to the medical profession, but it just it is so frustrating being a consumer of medicine of any kind, you know, if you, when you need treatment, it's really frustrating to get help and to get people to hear you and it's a process. I think about it like education. I can. I mean that's my field, but everything's a process, it's nothing. You know. We can't just look at a kid and go, yep, he has a learning disability, he's got the scarlet letter, you don't know. It's a process of problem solving and figuring out what's the root cause for the lack of- and that's part of like finding a great team, like a thousand percent yeah well, can you tell us too?
Speaker 2:I mean, it's not like that you didn't have a life before this happened, right? I mean I had a lot of stuff going on mean, tell us a little bit about that too, because this just seems like a dumpster just came through and then just decided to like let it on fire and then just drive around your house, but your house had living people in it, right? I mean you had a life, you were doing stuff.
Speaker 3:Yeah, so, um, I have ran two successful businesses all while being sick. I was last year I was training to compete at a national pageant all while sick. I earned 252 community service hours like a silver medal all during from volunteering while being sick. I mean I have a lot of stuff that I they say spoons in a pot, Like. I continue to do stuff all the time and I'm a slight workaholic, so I couldn't let like being sick I would just push it to the side, Like you just have to keep moving. And I did that until I couldn't do that anymore, until my body finally was like no, ma'am, we're going to have to go on halt for a minute. Yeah, Shut down the engine. And it's been hard. That in itself is a learning. Yeah, that's been a hard learning experience and adjustment for somebody who goes constantly oh, I bet that on.
Speaker 1:Uh, yeah, like sarah. It would be like sarah, I'm slowing sarah down. She'd go nuts. I think my mom has. I always say this wrong. I don't know. I'm sure you'll correct me, sarah, but it's rheumatoid arthritis.
Speaker 1:That's what she has and she takes a chemo treatment, like a drip, like once a month and it's, I mean, it gives her so much mobility. But just looking at you know what she's doing. She's almost 70. And she's like if she gets up and goes to the gym for like an hour and a half before she goes to work every day, and I'm like mom, how do you do that? She was like I have to, like if I stop, my body won't work anymore, like I have to keep. She was like even when I hurt, like the week before treatment is really painful. But she was like, even if I hurt, I just walk slower and I don't do anything whatever. She has to, you know adjust. But she was to you know adjust. But she's like I have to if I want to be able to move for the rest of my life. I think you probably can identify with that and like if I stop, then what?
Speaker 3:Yeah, that's the scary thing Like you always hear about, like when people who have worked their whole entire lives and then they finally retire and then they pass. So that's like that fear that lays in the back of my head is, if I stop doing stuff, what's going to happen, right? So I never want to be at that point where I've given up everything that brings joy because of this disease or diseases. So I won't let it. That's my, that's why I keep keep, I keep doing, I just keep going and and I look at things differently than probably the way that I should.
Speaker 3:For the most part, cleveland has given me a, a psychiatrist, and he is fabulous and I love him. He, um, he specializes with Crohn's patients, because we tend to suffer more with depression and anxiety. But one of the things that he just recently brought to mind was that I never considered what I'm going through as a trauma. It was just something that I was dealing with. Hey, I'm sick, or hey, I have this going on, or hey, I have suffered a huge trauma the past year because to me it felt like well, so, and so has so much worse things going on than I do, so why is it okay for me to say, like they're battling cancer, I'm battling Crohn's, like that's not, that doesn't seem like on the same scale, but he said it doesn't matter. They are having trauma in their life, but you're also having trauma to your life also, trauma to your life also. So, learning to deal with that and being okay, to be like okay I'm, I've suffered something traumatic, let's deal with this and not let it affect me and keep moving.
Speaker 1:Yeah, so inspiring. I do you follow healthy little peach by chance on Instagram? Have you ever heard of that handle before? No, I have to look them up. She was a school teacher and then she became like a full blown food blogger kind of. I mean she's like an influencer, basically food blogging. But I just you know, it's like you just never know what people are dealing with privately and it's such a good reminder. You like right now, you look at you, you're beautiful, you show up, you know you, you do what you got to do for your kids and for your family. No one would ever know. But internally you might be having like an eight on the pain scale that day and we just have no idea. We have no idea what people are dealing with on a daily basis.
Speaker 3:I don't know I just that's the thing like a good reminder. We talked about that today yeah, yeah it was.
Speaker 2:I haven't felt good for a week yeah, really and that's the thing is like.
Speaker 2:Whenever Candy sat there and said I haven't felt good for a week again. My perception of what's going on is like I've seen what she's been doing, you know, and she still doesn't feel good, and she still doesn't. It is a push, but I think it takes and correct me if I'm wrong I think it takes somebody to be their own voice and advocate about what your medical condition is. And I mean, obviously I talk about it all the time with you know, I'm a type 1 diabetic, whatever else, but I think that by us talking about that it brings it to the surface a little bit more. But then it also helps to destigmatize some of the things that are going on, because we are then able to tell people when we don't feel good, and they have an understanding and a sense about it, whereas at other points of time I just don't know that they would.
Speaker 2:If we are silent about what's going on with us, whether it's medical or emotional, then people will make their own inferences about why we're not taking part in something or why we are. And by sitting there saying you know what, I've got Crohn's and I've got fibromyalgia and I'm moving slower today, or I'm going to try to commit to this, but I don't know how much of me is going to show up at it. I think that that just puts so much more into contacts and creates a greater community of understanding. But a lot of times we just don't even we just don't do that. But I think for some of us it's almost become like again back to pageantry talk like it's our platform. You know like we talk about these things because it's important to us to create a sense of awareness about it and then to to use that as a push to continue, even when we don't feel like it and that's a hard thing to learn.
Speaker 3:To be willing to talk about the things that are not pretty is a hard thing to learn, because I feel like you're taught to keep things inside a lot where I personally was like you don't, like you just don't tell your business, and so it's hard to be like, hey, I'm having an off day, like I can't do this, or I've been sick this week. I don't know if I'll be able to show up to that. But I've also had to learn that in the past year, like hey, I can't get out of bed, so I'm going to pass. And you learn who is in your corner and who's not, and who understands and who doesn't. And you learn to love people for how you can love them and how they love you back and how they support you back.
Speaker 1:Absolutely. And think about all the people that don't, that are dealing with some of those same symptoms that you talked about and that they don't know, that they, you know, have some sort of underlying condition, like it hasn't been found yet, you know. I mean, it took you a decade really to get some answers to all of these symptoms, and so you just think about all the people walking around dealing with this day in and day out and how that affects their mental health and how people judge them based on how they show up today because one day they're fine and and the next day they're crawling into work and you can't.
Speaker 1:Oh, you're sick again. You know, we tend to like make up these stories when we don't really know, like maybe they just haven't had the right medical team and had the right diagnoses yet to get on that to find out a treatment plan. I think so many people walk around. They just don't feel good. You know they're grumpy. I know I get grumpy when I don't feel good.
Speaker 3:Right yeah so right.
Speaker 2:I mean, who doesn't? With all this candy, what would you say? It's two questions. What would you say has been the greatest, I don't know like the greatest struggle or hardship that you faced with this? And then what? What is it? Where is it that you turn to for strength in that moment? Like it's a dual question, but it's just. I mean, I know how you feel, so I've seen how you feel Sometimes. You've I know how you feel. I've seen how you feel sometimes. You've told me how you feel. I'll text you to be like. I'm in the hospital. I've got an IV. Yeah, I've been on prednisone for two weeks.
Speaker 3:I've had to learn or deal with. Honestly, yeah, I've been on prednisone for six months and I have a little roid rage. It's fine. It's fine. I mean, there's been a lot that I've had to like, learn, like and deal with. So the like, what I've struggled the most with is that's a hard thing to answer, because there's quite a bit that it has been very hard to deal with.
Speaker 3:My independence, I would say, is my number one thing that I've struggled the most with, and being able to do whatever I want. I miss working. That has been a very hard thing to give up. I am a workaholic and so not working has been horribly hard. Another thing that has been a huge struggle is the weight gain from the steroids. I had lost like 50 pounds prior to getting sick and then in November they put me on 50 milligrams of steroids and I'd been on steroids since. So that weight gain has been a struggle which affects me mentally, because I don't want to sound vain. I don't want to sound vain, but when you're looking at yourself every day, day in, day out, and you have no distractions because you're now stuck in your house and you're changing your way of life, it's very hard.
Speaker 3:The things that I will say the positives, the things that's been. The best part of this is is I have got to spend time with my grandkids. I have two grandbabies and so I've had a lot of time with them and I'm getting to see their milestones, whereas when I was working I was missing that. I've spent a lot of time with my family and I've spent time with my friends and I like when I wasn't working for the first half of last year, really up until like November, I was still volunteering regularly, so I'm getting to still help my community and be out in that, and that's really helped, also because it's given me a purpose.
Speaker 1:That is so important.
Speaker 1:Yeah, and I can. I mean it's hard, I we have talked about it on this podcast before, but how we feel about our bodies, a hundred percent at least, predicts my mood. Most days, if I am not feeling good in my body, it's I'm. You know, it's going to set the tone for my mood and, as much as I hate to admit that, it is like call me vain, call me whatever you want but it really does impact how I move about my day, and so I can certainly empathize with that. I've certainly felt that myself in different times. You know, when I was on different medications for anxiety, I gained, you know, significant weight with that and it really does. Here you are trying to help your.
Speaker 1:In my case, I was trying to improve my mental health and it almost was having like the adverse effect on some. You know it was controlling certain things I was struggling with, but it was also having some negative impact. So it's all like, you know, it's like one step forward, three steps back. It felt like, you know it was like, oh, I fixed this, but oh, now I'm 10 pounds, 20 pounds heavier, whatever it is. It always felt like it was like one more thing sounds heavier. Whatever it is, it always felt like it was like one more thing. I'm curious what the prognosis is for those autoimmune disorders that you have. Is it realistic to think that your team is going to find a treatment plan where you might actually feel good for like long periods of time? Is that something that they're like? What's the hope there?
Speaker 3:like what? What's the hope there? So the hope right now is um, I just started infusion, so, like your mom, like the chemo treatment, basically um, I just started those. So hopefully with those it will also help with um, the fibromyalgia and we may find out that the fibromyalgia is not necessarily. So I see a rheumatologist also in Cleveland. We're hoping that it's not necessarily fibromyalgia but it's also a secondary form of the Crohn's. Is that? The Crohn's is what is giving the joint pain. So once the medicine gets into my body and I'll go then every eight weeks take my dosage. So we're hoping in the long run that that will help. It will get my whole body into remission and um and I'll feel better until the medicine doesn't work well and then we'll. We'll try something.
Speaker 1:Try something else. I know my mom says she'll be on this medication forever, like you can't ever go off of it, whatever she's on and um, but it's worth it to her. She's like and I'm like so what are the like side effects that? She's like, oh, there's like a laundry list of things that could happen. She was like they check me for all kinds of stuff, but she was like, what's worse, I'd not be able to walk. Like I'll take that any day. I'll take those odds any day. So she's like it's worth it to me and she does.
Speaker 1:Yeah, it's like a seven, almost seven year old woman. She's kicking it. Barb's still doing the dang thing.
Speaker 3:She sure is that's what I have. They're saying about me. They're like katie's still out there volunteering. Did y'all say that?
Speaker 1:I'm sure they will be just in the you know what hour that we've. Not that I've known you. You just like such a go-getter and like I'm gonna figure it out kind of personality. It's like I'm gonna figure this out yep, that is.
Speaker 2:That's a hundred percent. And you talk so much about your community with passion. What are some of the community service projects that you really do align with that bring you the greatest joy to take part?
Speaker 3:in. I love that. It is a great week. I like being able to know that we're out feeding the shut-ins or people that are being re-associated back into the workforce, that have been in prison. So you're also getting to be a role model and show them that they fit in and that not everyone's out there judging them. So I love that part of the Valtteri dinner. I help with regatta. Every year I get to be in charge of the volunteers and then I help up in the VIP section at night. So that's like a good 70, 80 hour week.
Speaker 3:On top of that, I try to do stuff with Covenant House in Charleston. I really, really like their message and I actually have stuff I need to take to them now little period purses for women that come in. So those are my big things that I help out with. And then I do Willing for Hope through a group where we are raising awareness about suicide prevention. Here in West Virginia. We have a big event in September that we do and raise money, because a lot of people don't know that suicide in West Virginia is the second cause of death from ages 10 to 34. And so we're about to lose a whole generation of people. So we got to get that out. So I help with that and that's about I run some social media for for a festival. I mean it's just.
Speaker 1:I just have a few little things, just a couple, just some things that you know, just a few. I just have a few little things, just a couple, just some things that you know. Just a few little things, just a few little things, it's fine.
Speaker 1:You know, but it's, I mean, it's been great. It kind of gives you purpose and I think anybody like what. I didn't work last year. That's the first time in my since I was like 15 that I didn't have a job and that sense of purpose I was like, oh, like I didn't. I'm like what am I? What? Like I was so wrapped up in my role, in my career, that like that was my identity to some degree and I had to like figure out who the hell I was if I wasn't a school psychologist.
Speaker 1:You know, it's just a whole like uh, purpose in life. You know I it's great that you are able to still find something that fills you up and gives you something to look forward to most days. You know something to get out of bed, because I'm sure there are days you don't want to get out of bed or can't get out of bed. I'm curious if somebody is listening to this and they're like, oh my gosh, I have a lot of those symptoms myself. I wonder if I have some sort of autoimmune disorder. Well, do you have any kind of advice for somebody that's like just starting on the, I feel like crap. I know I need to go see somebody. Is there anything that you learned throughout the process, like a little nugget of wisdom that you would share with somebody? That's just kind of starting this whole figuring it out process. Mm, hmm.
Speaker 3:I would say believe in what you know to be true with yourself. If you know that you're not feeling well and you know that things are not right, you have to fight for yourself. You have to because no one else will fight for you, no one. People may love you and fight along with you, but when it comes down to it, you have to fight for who you are and what you know is going on and what's wrong. And if one doctor says, no, I don't think that's what it is, and you still think that there's something going on, it's okay to get a second opinion or a third opinion or to go randomly to a ER four hours away to get help, like it's okay to do that. So that's my advice If you know that there's something that doesn't feel right, go. It's okay to go, just go, go, it's fine the beginning.
Speaker 1:Right, you want to have respect for the medical profession. You want especially if it's a doctor that you've seen for a long time, you want to be like, okay, they know what's bad. Like they have my best interests at heart. So sometimes it's hard to be like. But you see, there's just this that you know it's hard to advocate for yourself because you don't want to hurt anyone's feelings. But clearly, when it's okay, it's not, we don't need to worry about that doctor's feelings. Right, he or she is still going to get paid, regardless of if you feel better or not. I promise.
Speaker 3:Right, somebody else will go to them, someone else will go to them. Like, if you leave, somebody will fill your spot, it's fine, it's okay to go somewhere else. And if I wouldn't have gone to Cleveland, like if my family doctor wouldn't have said, go now, yeah, and I, I mean I would have probably still be dealing with issues or I'd still have been on Humira and gotten sicker and I wouldn't have known that, like, the Crohn's is attacking my eyes, like Cleveland has brought so many different levels of hey, this is what could actually be happening, or hey, like that's. We found out that the Crohn's is making, like the retina in my right eye thicker, because that's what Crohn's likes to do, is make things thicker. I wouldn't have found out that, instead of just having Crohn's, I have Crohn's and IBS. So my intestines are continually fighting each other. They don't know which way to go. I mean, you have to. You have to fight for yourself, you have to.
Speaker 1:And I assume that was somewhat validating when they came back and told you all this and you were like okay, thank, on some level, like thank god, like we're getting to the bottom of this, like okay, they see what I'm feeling yeah, and I think that's why I have so much respect for my team at Cleveland, because they were like you're not crazy, you really are sick.
Speaker 3:You have all this going on and, by the way, this is going on also, you just don't know it yet. I mean, like I will forever be thankful for my team in Cleveland because they are changing me for the better and they are changing my thought process through my psychiatrist. They've changed my eating through my nutritional therapist. I have a doctor of pharmacy that I absolutely adore who is making sure that all my medications are working together. I have a gastrologist who I think is a genius, I mean my ophthalmologist. She may make me go through four hours of testing every time I see her, but it's, I mean, like they are doing what they need to do to make me better in multiple ways.
Speaker 1:Yeah, I love that team approach too, that they're all kind of like you've got all these specialties coming together at the table, all those heads coming to the table which normally you see when it's like cancer treatment, right, or somebody's at what's the one in Houston. You know, when you go to like these big centers that are kind of well-known that's typically what I've heard it's like a team approach, everybody's weighing, not one person, and so you know, sometimes it's just having access to that kind of health care too. I mean, there isn't a Cleveland Clinic in West Virginia, like there's just not, and you may have to travel to find the team that you need if you're really sick.
Speaker 3:Yeah, and you, just, you, just go.
Speaker 2:It's not an easy. I mean, maybe you can't even disagree. It's a long drive to Cleveland from from where you are. Yeah, it's, it's a. It's a pretty long drive. Uh, you make it the best that you can, but yeah, it's not like just hopping in the car, you know, and going downtown like it's a haul we're going.
Speaker 1:I have four hours yeah can I ask what kind of like financial burden, if any, these diagnosis have brought on, because I mean I can't imagine that it's cheap to go to Cleveland Clinic um, it is definitely.
Speaker 3:It is definitely an ordeal every time I go, because usually I, so it is four hours one way, so it's an it's a whole day event. So what I'll usually do is book multiple doctors visits on the same day, go up the night before. So every time I go I almost always need a hotel room, gas and food, because you're there all day. Usually I have someone with me, whether it's my son or my daughter, my mom, my husband, somebody's always going with me, because they don't make going to Cleveland by myself. And so that part of it as it adds up, especially when I'm going two times a month, or three times a month, depending on the month. Luckily they do do Zoom calls, but for me personally, with my insurance, every time I see somebody there I'm paying $100 copay. That's just right out. And on days that I see three, four, five doctors on a day, it's an expensive little haul. I mean it quick. Yeah, I was gonna say it adds up quite quick.
Speaker 3:Um, on top of that, like I said, I've not worked for the past year, whereas I'm blessed enough that my husband has a good income and I'm able to like. It's not like. That part is a struggle, because what would happen when I worked was he paid the bills and then anything that I want extra was on me. So I've had to learn to like scale back a little the things that I purchased for myself, yeah and uh. That's been a little bit of a hard learning experience, but he usually doesn't give me too much crap if I'm like, hey, hey, I really need this. You know that, hey it's me.
Speaker 3:I just want to buy this.
Speaker 1:Oh good, husband Tracking it. So that might be a good thing, cause we're always. I'm always like, how can you help somebody If somebody is not feeling? Well, there's not a whole lot you can do, right, somebody can make you a meal, but you may not be able to eat it or things like that. But somebody could, like, you know, pay for your hotel room, like if you had friends that wanted to do something.
Speaker 1:Just thinking about all the travel expenses, like making, like you know, a little basket of like gift cards, of you know things that you can eat on the road, that kind of stuff. Just trying to think I'm always like, how can you help somebody, you know, if it's somebody close to you, what are some things that we could do? And just listening to you talk, I'm like, okay, you could like pay for their hotel room one night. You could get them some gift cards to some different like chain restaurants I know that's not great, but you can find them in most cities. You know the Chili's or whatever that kind of stuff. But is there anything else that's been super helpful that your friends or family have done? Besides, you know, riding with you to Cleveland and just being, it sounds like you have quite the support system there. But anything else that's helpful that you find super helpful.
Speaker 3:But anything else that's helpful that you find super helpful. I think that for me, I've fought a lot over the past year with depression. So what I've found to be really helpful is that I have a core group of friends that they notice when I get quiet or when I start being still and they start reaching out hey, let's go do this or hey, let's go do that. So I think, honestly, that has been a huge help. Honestly, that is more important to me than if they would be like here is $100 in gift cards, do you know? Because, yeah, I needed, I needed them more than what they'll ever know.
Speaker 3:Like I'm gonna get emotional, but I've needed my friends when there's times that I feel lost. There's times where I sit there and I'm like who am I? Now? I don't even know who I am anymore. I really don't. Everything's changed, everything's different. Nothing is the way it was. I was good at where I was and I was living a great existence, and now things are different and so that, like that negativity and that darkness creeps in sometimes, like I'm that's me being honest. Like it, it creeps into my head and I have to learn to like pull from that. But I'm lucky enough that I have a group of friends that they start. They will literally randomly text me and be like hey, you, okay, just wanted to check on you, you want to go do something, and I like that has been probably one of the most helpful things in that year that I've I've had.
Speaker 1:I love that. It sounds like you have such a good group of people looking out for you and it reminds me a lot, sarah, of of our episode with Nikki, a friend, a girl that I had grown up with. She has MS and similar. She was just like you know, just people to just make plans like.
Speaker 1:I'm coming over. You know just people showing up and even though you can see her illness right, you can, she's in a wheelchair, you can see that she's struggling, but when it's something you can't see, just like you said, it's those good friends of yours that just know. Oh, she's quiet, I haven't heard from her, but she's something's going on. And just being aware of that, good reminders to us as friends and loved ones, to remember to reach out to your people when somebody gets quiet, whoever it is, even if they don't have some sort of autoimmune disorder or something else that these kind of like illnesses that you can't see. Just reaching out to people and when you notice the change.
Speaker 1:Mm hmm, yeah.
Speaker 2:I totally agree with that for the non-sick person to not take it personally. Whenever plans are canceled or whenever you continually get told, no, I can't, I don't feel like it, I don't want to go. If you're that person's friend, you keep asking that question that you may continue to get a no. But it's sometimes that ask that's most important, because it's a reminder to that person that they care about you, they love you, they want you to come out, they want you to do things. You know, just keep checking in, definitely.
Speaker 3:Yeah, definitely, like I mean, like you said, even with just your friends in general, if they start getting quiet, reach out hey, you okay, you good. I mean I try to do that on a regular basis If I see something that feels off. I'm really like big on people's energy in general, so it's nothing for me to reach out to people and be like you good, you okay, let me check on you. But it's also because that's what people do for me.
Speaker 1:Yeah, and you've seen what an impact that's had for you. So, yeah, good reminders, all good reminders here. I'm so grateful that you felt comfortable enough to share your what you've been dealing with. I mean, it's a lot, you know you're dealing with a lot. Nobody wants to be like let me tell you about my five illnesses I got going on right now. So we appreciate your willingness to share with us, because it does, it's going to help somebody, somebody out there is struggling with something similar, yeah, and then I mean people can always.
Speaker 3:If somebody hears this, yeah, if they hear this and they're like I've got questions, people can always reach out to me. I have no issues talking to people. I don't know a stranger If you. If you've ever met me, then I probably have talked your ear off at some point. So, like somebody hears them, than welcome to reach out. And even if it's through like Instagram, I have a page where I've started and I go around and I own a Jeep, so I go around and I duck with a card on there that has different autoimmune signs. It's like five things that you may not know, because I feel like if you're going to duck, you should duck with a cause, but I try to get awareness out because you have to, or people think you're just chilling in your house avoiding them.
Speaker 1:Yep, well, I love that. I love the duck with a cause. I never understood the whole duck situation. My son's teacher last year had a Jeep and we did get her a duck, but I didn't really understand what I was getting a duck for. I don't know. It's a Jeep thing. Right, it's just to make you happy. It's just a Jeep thing.
Speaker 3:It's just to make you happy, it's just, it is a jeep thing, it's just a way of like being like hey, have a good day.
Speaker 1:I do love seeing all the little ducks on people's dashboards, like sometimes you'll see a jeep parked and it's got like ducks all the way across. Super cute Duck with a cause. I like it.
Speaker 2:Candy with a cause, that's it Candy with a cause.
Speaker 3:It is candy with a cause.
Speaker 1:So cute. Okay, what's your Instagram handle? If somebody wants to look you up and maybe reach out to you, what's your handle? Where can they find you?
Speaker 3:So my autoimmune one is hashtag duck autoimmune diseases and, um, they can reach out through that. Or at candy arthur, I'm on tiktok also. Um, I have posted this week some if you, if you're having a bad day, do this kind of things. So yesterday I was having a day where I didn't feel good, and so I decided to make myself get out of bed and I went to the grocery store and bought some ice cream and a little cake, because who's not happy with cake and ice cream? Today I went and got my hair washed and blow dried. You did you always feel good when your hair is clean. You know what I mean. Like. So they can reach out on any of those platforms.
Speaker 1:Okay, excellent. Well, thanks again for sharing your story. We're so appreciative. Check us out. You can find us on our website, lilaspodcastcom. We will also link Candy's handle in our show notes so you can find her there if you want to follow up with the hashtag, or on her Instagram or TikTok. I think that's all for today. I'm out of questions and my kids are hungry, so I actually can feed these children all for today I'm out of questions and my kids are hungry, so actually thank you so much, Candy.
Speaker 2:Like seriously, your light is infectious and it just draws people into it and you can't go anywhere without doing good, and it's not because you try, it's just because of who you are.
Speaker 3:Love you, thank you. I appreciate that. I love you. You thanks for having me and letting me rattle on for an hour about the dumpster fire that I am. But everybody's got to be something. So if I got to be a dumpster fire right now, then that's what I'm gonna be. I'm gonna burn bright.
Speaker 1:We're burning, as you say. Just imagine the version of you that's on the other side of this right, like she's so much stronger, she's so much more knowledge, like about all the things, and so you just could find in the silver linings, I guess, the best you can. Yeah, hopefully next time I'm in west virgin we can all go out for an adult beverage or something. Cheers.
Speaker 3:But nothing spicy.
Speaker 1:I don't like spicy anyway, so that works out well.
Speaker 2:That sounds awesome. Well, thank you again. So much Love it.
Speaker 1:All right. That's some good humor Until next week, Lylas.