Imagine finding yourself in a whirlwind of chronic pain and being told by the medical world to just lose weight and follow a keto diet. Picture the emotional turmoil that comes with such advice and the relief of finally finding a medical professional who listens. This is the narrative of our guest, Kayla, a brave individual who faced chronic conditions head-on. Her journey from diagnosis, mental health struggles, the empowerment of finding the right medical team, to finally being diagnosed with Psoriatic Arthritis, is nothing short of inspiring. The resilience and determination she displayed in the face of prognosis will inspire listeners who might be in a similar situation or simply need a story of triumph against adversity.
With her unique toolkit of coping strategies for managing chronic pain, Kayla offers listeners a wealth of practical tips, from the utilitarian—like ice packs and ergonomic keyboards—to the emotional—such as building a supportive network and harnessing the power of faith and social media. Kayla underlines the necessity of self-care, drawing strength from devotional readings, prayer, and inspiring individuals who candidly share their own journeys. As a writer, she brings a fresh perspective on the themes of ability and disability and how they shape one's sense of self. Join us for a tale of hope, resilience, and the power of community in the face of chronic pain. This episode promises to stir, educate, and empower.
Links:
New Intro 2024
2024
Website: https://myspooniesisters.com/
Support:
https://www.etsy.com/shop/MySpoonieSisters
Imagine finding yourself in a whirlwind of chronic pain and being told by the medical world to just lose weight and follow a keto diet. Picture the emotional turmoil that comes with such advice and the relief of finally finding a medical professional who listens. This is the narrative of our guest, Kayla, a brave individual who faced chronic conditions head-on. Her journey from diagnosis, mental health struggles, the empowerment of finding the right medical team, to finally being diagnosed with Psoriatic Arthritis, is nothing short of inspiring. The resilience and determination she displayed in the face of prognosis will inspire listeners who might be in a similar situation or simply need a story of triumph against adversity.
With her unique toolkit of coping strategies for managing chronic pain, Kayla offers listeners a wealth of practical tips, from the utilitarian—like ice packs and ergonomic keyboards—to the emotional—such as building a supportive network and harnessing the power of faith and social media. Kayla underlines the necessity of self-care, drawing strength from devotional readings, prayer, and inspiring individuals who candidly share their own journeys. As a writer, she brings a fresh perspective on the themes of ability and disability and how they shape one's sense of self. Join us for a tale of hope, resilience, and the power of community in the face of chronic pain. This episode promises to stir, educate, and empower.
Links:
New Intro 2024
2024
Website: https://myspooniesisters.com/
Support:
https://www.etsy.com/shop/MySpoonieSisters
Welcome my lovely Spoonie Sisters. It's your host, Gracefully, Jen, here to introduce you to our amazing guest today. Kayla is a fellow Spoonie sister and author who's here to share her inspiring journey battling chronic conditions. Hi Kayla, how are you?
Kayla:I'm great. Thanks so much for having me today.
Jen:It is my pleasure, so I want to kick things off a little bit. Could you share your diagnosis story? I don't even know where to begin with this. I figure I'm just going to let you tell us about you.
Kayla:Yeah. So I think a lot of people, unfortunately, can relate to this and that it wasn't an easy journey for me to get my diagnosis diagnosis. I grew up with a mother who had a chronic condition, as well as an identical twin sister who struggled. She was diagnosed with ulcerative colitis and arthritis when we were very young, in middle school. She had a lot of issues, but it wasn't until we were in sixth or seventh grade that she officially got the diagnosis for her. I have had some issues. The older I get, the worse those issues have gotten, but I always I didn't want to feel like I was trying to compete with my sister, because I saw how much she struggled and it was like she's going through all of this. This is what I'm experiencing is nothing I can't. We got to make sure she's looked after, which I know if I had spoken up, they would have been able to support me, my sister and my mom despite their own struggles, but that was something that I just had to work through.
Kayla:The older I got, the more issues I had with chronic fatigue. I really struggled with mental health and migraines and some GI stuff. I actually was in and out with a lot of feminine issues. I had some surgery to remove ovarian cysts. Just real bad periods with my cycle not always predictable, just kind of up and down, just all these different things. And I think that something, too, is because I had so many different things. When I would go to a doctor it was hard to say okay, this is one thing I need to focus on and I think sometimes that can overwhelm the practitioner and they're like, okay, you've got this, doesn't make sense for you to have so much going on. But I ended up finding an awesome OBGYN. I've had four experiences with physicians in the past, specifically OBGYNs. I've been told over the years that I should just try a keto diet and then I would be fine. I should just lose weight and then everything would be fine. A lot of things focused on past experiences with mental health struggles such as depression, and then my weight, and I just felt very, once you're dismissed, in my case, it was very hard. It was very hard to say no, I know my own body, I know my experiences. What my tired is not an average person's tired who does not experience chronic fatigue and chronic pain.
Kayla:I actually, this past year, I received the PCOS diagnosis from the wonderful OBGYN who I did some research on and connected with him and he is absolutely fabulous. But actually this past January I ended up in the hospital. I was just my pain was just so, was just so bad. And after the hospital trip and when I went into the ER, the doctor on call, she looked at me and she said what autoimmune condition do you have? And I was like I don't have anything. I've got migraines at PCOS. And she was like I can look at this. This screams autoimmune. And even though I got the hospital referral to follow up with a metologist, everyone was like it's going to be nine to 12 months before we can see you. Yes, I was just like, oh my gosh. So I reached out to my OBGYN's office and I was like Can you help me? And I was endosyrematologist within a month.
Jen:That is amazing. Hands down. Amazing Because that does not happen very often.
Kayla:No, I was just, like I said, finding this doctor. It's just been phenomenal. Him and the whole office has just been really life-changing for me. And then you know he got me in because it's like this whole umbrella and they're all connected, so they've all got the same system.
Kayla:So I went into the rheumatologist which my OB actually ran some blood work before I went to the rheumatologist. So there was like some base stuff we ruled out my mom, she has leotis, but they ruled that out. But there were some other indicators with my blood work that, yeah, there's autoimmune going on and I've had ups and downs with psoriasis since adolescence myself and with the pain flared up, especially wrists, shoulder, like just can't and like it would go up into this, inflamed, and it's like going up from a shoulder into my neck and it's just. You know, that was what was so bad in January. But the rheumatologist, he was like okay, this is what we've got, we're going to do, here's your treatment plan. We're going to try to humor it.
Kayla:I was like whoa, whoa, my sister took that over 10 years ago and that was just scarring, traumatizing for me to watch her have to do that and then for her to experience that. But they've changed that. And he said and he wasn't like this is what we're going to do, which I appreciate. He was like he explained to me that the medication is different than it used to be. And he was like based on blood work, your symptoms, everything this is what I think is best. And you know, there was a couple other options. But you know, me and my husband, we are, we want to have children. And he said, you know, this would be a category or class that would be okay. If we move forward with family planning, we wouldn't have to like necessarily change later down the road. But I've got to say I am a completely different person right now, november 2023, than I was January 2023.
Jen:So in January did you get an actual diagnosis or did they kind of have to run through it a little bit? Yeah so we ran through it a little bit.
Kayla:But the first time I went in to see the rheumatologist he was like psoriatic arthritis. This is, I'm like 99% sure what it is. We're going to try the Humera and it. I'm doing it twice a week and just my quality of life has improved so much. I can tell when it's close, like that close couple of days, I can like, okay, I'm starting to fill it, like it's shot day, like I don't even have a double check calendar, like I mean of course I do, but I just know I can feel it. And so, you know, when I did my follow up with him after my first month of using it so two doses he was like, yeah, he's like you know, this is, this is good, so I'm happy with it.
Kayla:But in between that diagnosis I also had with all the GI stuff going on. I got a scope and they diagnosed me with the EOE Eonsoccalific esophageitis, okay, and basically it's it affects the esophageitis that's triggered with. It's like an immunoresponse allergy with allergies. Yeah, so I'm working with a nutritionist who's great, but it's like trying to figure out things to stay away from. And for me that's been very challenging because it's dairy is one of my allergies and for someone who I grew up with. You know in the South, milk and butter and everything. It's like changing everything.
Kayla:Those are main ingredients in all the dishes, but I think sometimes you know, even though it's big, because you know that's everything, you know it's a key ingredient, those are staples you keep in your fridge. Just it's a big thing but it's a little thing too, like just making this shift and like the impact it has. You know, and it's not. That's not to say that I'm every day I'm pain free and I never have any flares or any issues, but I guess it's just, especially with how bad I was earlier this year with just everything culminating together, the EOE, I actually ended up recently just having my gallbladder out because I was having, I had gallstones on top of the first thing else it was just-.
Jen:Oh my gosh, Are you sure we're not related somehow? I don't know.
Kayla:but it just. I remember there were several days where it just was like I don't want to say that I was hopeless, but I kind of was. It was like it was hard to stay positive. There were days that I wasn't positive. There were days.
Kayla:I know that when you hurt, when you are in pain, it impacts your whole demeanor. Sometimes it's really difficult not to let it just become overwhelming. I'm just very thankful for being able to find, I'm very thankful for having a good support system with my husband and my family. I've got a couple of friends that I'm able to talk through difficult times with, but with that support system I'm so thankful. Finally finding good medical care. Not everybody I have seen in the last year has been a good fit for me, but finding my rheumatologist and my OB that put me in touch with a lot of people has just been wonderful and I'm so thankful for that.
Kayla:I'm thankful that I found my voice, so to speak. I'm not thankful that I got so bad that I was like I have got to go to the hospital with this pain. I just came. But it was finally, I guess, at my breaking point that I realized I was going to have to not just pursue answers, but when someone says, no, you just need to lose weight or you just need to try to be more positive, have you tried feeling better? It was. I've got to just focus on a couple of things and start taking away with some answers.
Jen:To go with what you're saying. At the end of the day, not everything is weight related or diet related. It's just not. I think that's what's so aggravating to so many of us as we go to the doctor and, depending on who you're seeing, sometimes that's their response is what are you eating, what are you drinking? Oh well, you need to lose weight and that's just not the answer. It's not, and they needed to look at us as a whole and stop being so lazy. I think that's what it is. Some of the times they're just lazy, they just want to get to the next person, and so when we find these amazing practitioners out there, man, it's like we got to share them. We got to share them with everyone and let everyone know this is where you need to go.
Kayla:Sorry, I had a lot of questions there Facebook and Google and I'm like they're awesome. People have talked to my co-workers and stuff, because that's been something really challenging too, especially since January. I work in the school system and it's hard not for me to beat myself up when I had doctor's appointments or I was in a real bad flare and I was just I just couldn't. And I've got a really good team who work to make sure that my school babies were taken care of. But if I would talk to somebody they would share something. Maybe they'll fail a member. I was like, oh, this is who I would recommend. They're a metologist. They should call and see if they can. There is a wait list. But it was like see if they've got someone currently on the wait list because I think it's going to make a difference. It's good for me.
Jen:So are you familiar with the term Spoonie.
Kayla:I am. My sister actually first introduced the term having spoons and, excuse me, it's been a while now. But she would say I just don't have enough spoons for that. And it's just a. Really I love that imagery and it really helps be able to express and visualize and then for other people to understand too.
Jen:Absolutely so. What would be your five must haves in your Spoonie toolkit?
Kayla:Um so like, with ups and downs. So I guess one thing is not how to word it Um. So you've got to be open to saying this is my boundary, that I need help. I'm someone who I don't want to. I don't want someone to feel like I don't have it under control. I want to be self sufficient, I want to get it done, but I'm going to push my. If you push yourself too much, Even when you're like, oh, I've got a burst of energy, I'm feeling really great, if you don't set that boundary and ask for help, you're gonna burn out, you're gonna add a spoon, you're gonna not be able to do anything. So you've got to Paste yourself. So I guess that was a long thing, but I guess for the, you know, one of the must-haves is being willing to ask for help.
Kayla:I Mean as far as something more related to my chronic condition. An ice pack is a must. I know that's a little bit more like concrete, but I've got a rotation. I've got ice packs that have straps that will stay so I can put ice peps on, and I also have a multitude of different heating pads For whatever I need at the time, and I've got a drawer underneath my bed for heating pads and I can just pull out. I've got one that's especially for my back and shoulder and Before my mom told me that that exists and I didn't know. So I think Something else you've got to do is ask questions, and also we have so much available to us online, like you know. Go to Google Alexis theory ask, you know, real people will also use technology tools to find things we can. I like to talk to me now.
Jen:I know I was waiting for mine to go off. She's like I don't know.
Kayla:But yeah right, there are things that Exist today that can help you, you hope, and feel better with your chronic pain. That didn't exist five, ten years ago, like the Right keyboards ergonomic keyboards because you know I've got a lot of problem with my wrist and the the mouse, you know, using that that makes such a huge difference. It's design and you know it's something that I would have thought of on my own Until it's like you know what some of that could help. And then it's like you just Google, you know Tools for wrist pain and you know you click through, and then it's like you know we're working on a computer and then what? Oh, look at these.
Kayla:So that's something else in your toolkit is a research mentality too. Like you want to, you know, look up and see what's out there. Because, like I'm still finding stuff, my sister will send me stuff and I'm like, oh, that's really cool, like kitchen tools that are easy on your wrist. And my mom, she got us a can opener and on top it's got this like rubber thing and it makes opening jars so easy.
Jen:That's wonderful. You know, I have an ongoing Amazon list and I just keep adding to it and then every time I Finally decide I have to have this, I finally buy it. But I have two different lists one for me to get it for me, and then one so I can share it to all my spoony friends and say Okay, you got to go get this.
Kayla:That's awesome. I love that you've got the list to share with others, like here's some you know great things to try. That's awesome, you know. I wish there was like Like a, like a collaborative, like anyone that found anything could just like go almost like a Wikipedia page and you could just go Like you know there's something that would be a hub that spookings could just Like contribute things that have been useful and then other people yeah, like an ongoing Google doc.
Jen:Maybe that's something we need to do. Yeah, that'd be fun. Okay, so we were talking about your spiny tool kit. I'm trying to think did you name more than three or did I stop counting?
Kayla:Talking a mile a minute. So we had you know he hasn't ice packs. We had the Having the mindset to ask for help. Yep, we also said I'm having the Dry for research. So three, so I mean three right, that was three, okay.
Kayla:So two more, two more. Um, I Think you've got to have one person, at least one person if not, if not if you have more, great, but at least one person that you feel comfortable with being honest. But also that person the same in that you know someone that you're honest with, but also someone that's gonna listen to you, they're gonna validate your experience, but they're also not gonna let you wallet. So, finding somebody in your corner that is going to support you and again, validate your experiences without letting you sink into, you know, crossing that line between Processing what you're dealing with and then letting it becoming overwhelming. Don't show you're not wet knit, overwhelm you and keep you down. So, definitely, having at least one person to talk to in that way is a must have. But even having that one person to really talk to you also need a community. Like you know everybody you and me we have a lot of similar experiences. We can help each other, just like everyone listening in. Even though everyone's story is a little bit different, there's a lot of similarities and there could be something that you know, some part of my story that resonates with somebody else. You know, we can all share our stories and work together.
Kayla:There are, you know, facebook groups. You know I'm in one group where they share tricks every Tuesday for you know your mindset and also dealing with physical pain, with chronic illness. So I love that. Yeah, yeah, it's that Facebook group. It's an author, leslie Hope, and with the pain she's actually got a devotional that goes through. It's designed for women that deal with chronic illness and chronic pain. I actually got it sitting on my nightstand. It's my next one. I'm going to start Hope and with the pain Okay.
Jen:Okay, we're going to we're going to make sure we link that. So yeah, and you know, she's got the Facebook group.
Kayla:And it's, you know, it was just really good. So, yeah, four and five is have your toolkit, have someone you can talk with and that's going to support you. And then also, you need to, you need your community and you need to, you need to. We're all here to help each other. And you know, even if you, even if you don't feel like you're at a point where you can pour into the community, don't be afraid to reach out, because they're going to pour into you and then, when you're able, you can pass that on and pour into someone else. You know, I think that's a really good point, because we're not always going to have the capacity or be in the place to be able to give of ourselves.
Jen:You know, we might be sick, we might be going through a flare, whatever it is, but we got to remember that people want to pour into us just as much, and so we've got to be willing to accept that and get to know people in the community Absolutely and I think sometimes it's we feel like we don't need grace.
Kayla:And so we're like, oh, I can't ask you know, for help or someone to extend grace to me, but you, if it was reverse, most of us would offer those things we're denying ourselves to somebody else struggling. So when we, when we, when we're not in the community we're not in the community, we don't have 100% that day, or even 20% we can, you know, rely on our support system and our community.
Jen:Well said. So some of the questions I want to ask you. I feel like we kind of covered that without even having to be asking you, which is great. I mean, you just have all the great information. We're always looking for great resources. Can you recommend three resources, whether they be an account you love to follow, an article, a blog, just anything that you feel like fills your cup.
Kayla:So, yeah, I'm, I. For me, I get a lot of energy from like some downtime reading. I I've had multiple books going on and one of them is always a devotional and I'm reading one devotional now. The other three, 16s, and that devotional is going through the chapter three or 16s and all you know throughout the Bible. That one, I'm very much enjoying it.
Kayla:And then the next one that I'll be going into is hope amid the pain, by Leslie McKee, who wrote that for women with chronic illness and chronic pain, and it's it's, it's the devotional. There's also like an area to like respond to with some prompts and stuff. So I'm really excited and with that, I think that's important. You know, for me, my faith has been very vital for me through this journey and I think it's important for people to see what's important to them and to give themselves a time to recharge. I think the devotional and prayer has really that helps me day to day. And so so, yeah, resources, I definitely decided to dive into devotional hope and that the pain for, specifically, women dealing with chronic pain, chronic illness. I also, you know one thing I think you know I mentioned before that she's got the face of her supposed to be real great for poor communities. I really do think social media has a lot of benefits in that you can find people with shared experience with people similar to you.
Kayla:You know one person, another author that I know. Her name is Gaffney Seltz on Sheet. Her roots don't necessarily focus on chronic illness and chronic pain. Her recently read her book the Legend Bride is a science fiction novel. It's very good and also on her platform, is very open with her Instagram account. She's very open with her author's platform, with her day-to-day life with chronic illness and chronic pain, and she's very inspiring.
Kayla:Because I'm an author too and you know some days when I'm really struggling, you know, I see, even if she's not writing every day, you know she shares what she's doing and it inspires me. But even though I can't go, go, go, go, go and do everything I want to do when I want to do it, the only free timeline is what I put on stuff and so I definitely recommend you know people to check out Gaffney she, gaffney Seltz, author, gaffney Seltz on her Instagram and, you know, find other people, other profiles and pages that will have that open up. You know, because you know one hand with social media is and I'm broke here first on my personal page. You know you show the highlighters and it's not relatable, really it's not. You know like you can get involved and you know you know play so bad. You know, because you know you do have good moments. But it's nice to have a candid, open conversation about struggles and everything out, especially where that added layer has on chronic pain and chronic illness.
Jen:Okay, so I want to dive in. You're an author. I'd love for you to tell us what you write about. We'll talk about that.
Kayla:Yeah, I actually have a blog and a website, the Uniform Writer, and I share book reviews and interviews and stuff mostly on the blog. But I also have information about my own writing, my own book. I do have an award-winning novella. I write fantasy geared towards young adult, middle grade audience but also written with some universal truth that I think older readers will appreciate as well. But the book that I'm currently on, the main script I'm currently working on, you know I've been going through this book. It's a Diwial, it's about teachers, and book one is the Goodness of New Horizons and it will be published in the National Foreign Ministry. But I'm really diving in with those characters, the idea of Samoy looking at chronic pain and the idea of ability and disability and how that impacts yourself and how others perceive you, the two primary characters in this, and I guess you're toward young adult, young adult, young adult. We have Rowan and we have Bly and Rowan won't find he's on a mission to find a script for her young sister, bly, who has been, you know she's got this and nobody knows why or how that she, you know, struggles with watching and where it's a fictional fantasy world they don't have so the skyway we would use in today's language. But Rowan, being you know barely scheme, she's like okay, she's not always been like this, I'll be the kind of cure and for why? You know her hand, because it is so filthy. On one hand she's like yeah, I've not always been like this. So on one of her, I want to be one of these four of her six, but it was just. They're going through their own journey. Bly realizes, and Rowan has to realize too, that just because Bly struggles with her pain and with her mobility, that doesn't make her any less than she was before. And so, and it's just a relationship and just looking at the other, and there is, you know, a plot, there is a larger piece where you know Rowan, she's been with it with what is called the side, and she can see it with people's souls and like their heart and their memories, and she can actually see what she does. So she can see the light and darkness do one's job, and so it's being like some internal language. She can also use this ability, the political thing. So that's going on. Why we've got those.
Kayla:You know, these personal journeys that Rowan and Bly are going on to. You know, because I won't working in the school system and I have worked, you know, from high school, middle and now, with elementary students. I want young graders, whether they are someone who is experiencing chronic pain, some spells or walking somebody, go through these struggles. I want them to be able to find a brilliant and be reaffirmed, you know, or get that reassurance that it doesn't matter if you struggle, if you have this pain, if it does impact you, you're not in love. You still love and you matter. Those who love doing with this, they still matter. They may not can do it the same way you did, or you may not can do it the way somebody else can, but it's going to be okay, even on the days you don't hate.
Jen:I think it's beautiful. Still, I'm not going to lie. I'm over here at Havneam, I'm open and I'm looking, and I'm looking at these big covers. They're beautiful.
Kayla:So yeah, I've not been super active on Instagram mostly. I've done a lot more times than the blog, but I'm hoping to get lots of views.
Jen:And you can't do a get all the places all the time. Really, you're trying to get these beautiful books written and so your skills are probably better. A lot of them are anyway. Can't give them time to share with us today. Is that anything we didn't talk about? You think we need to make sure we add in before we're?
Kayla:done. I just want other students that are listening to you know remember to advocate for themselves and be okay with asking for help. Yeah, you know it again. Like I said, even when it doesn't feel like it's going to be okay, it really is going to be okay. Yeah, yeah, mine is normal, that's okay, oh, it's not your name. All right. Well, thank you for joining.
Jen:It was such a pleasure having you on here. Yeah, all right, my twinny sisters, until next time, don't forget your stand.