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For a Bad Day, When You Can’t See the Light

Living, Laughing, and Being a Queen with Ashley Dawson

This is our transcription of our amazing interview with Ashley on The Real Life Show, connect with her on Instagram @LapinStudios!

Cassie: Welcome to “The Real Life Show: Living with a Chronic Illness.” We are your hosts, Cassie and Chelsea. I’m Cassie, a single mom living with a chronic illness who is extremely passionate about living a full and happy life.

Chelsea: And, I’m Chelsea, a mindset coach that has a passion for helping people learn to put themselves first and be the best version of themselves each and every day,

Cassie: We came together to create Spoonies Unite, an uplifting community that offers resources, guidance and support so you can live your best life while giving you the space to be yourself, be heard, and feel understood. We hope that by providing education from experts, we help spoonies and their loved ones thrive.

Chelsea: This show is not only for those who live with a chronic illness, but their friends, family, spouses, and just anyone else existing on the Earth.

Our goal is to normalizing having a chronic illness by sharing the real stories with real people and show the world how relatable those everyday struggles can be. There’s a little something in here for everyone.

Cassie: And, of course, thank you to our patrons, for your continued support making this possible. If you love our show and want to get some extra goodies, go to patreon.com/therealspooniesunite. Enjoy the show.

Hi, everybody. Welcome to today’s episode of “The Real Life Show: Living with a Chronic Illness.” Today, we are interviewing Ashley Dawson, who is a writer, actress, and model who works full-time in radio and media in Atlanta, Georgia. Her life has been a struggle with chronic illness almost from day one and her art and storytelling focuses on the positive ways that sufferers can reclaim their health and happiness even if their conditions persist. Our bodies do not control us, our attitudes and outlooks do.

Chelsea: We had so much fun talking to Ashley and I feel like I say that every single time we talk about the people that we’re interviewing because they’re all just amazing. But, Ashley has this just this energy to her that is so, so fun to be around. And, she does a great job of telling her story of what happened when she was a child and how it comes full circle with all the different things that she’s got going on in her life, in her body. We love talking to her. Her story kind of felt like there was multiple layers to it that as you listen to the episode, different things come up.

So, listen to it all the way to the end. It’s a good one. Spend some time. And, you might notice our intro into the actual interview is a little different because we literally just jumped on in because we just started talking right away. It was so great.

Cassie: Yeah, we were like chatting, fricking hanging out with girlfriends for a while before recording them. We’re like “Shit, we need to record this.”

Chelsea: It was a wonderful conversation. And, we truly and deeply hope that you enjoy it as much as we did.

Ashley: Sometimes it’s like I don’t have the camera on me all the time, so I will recreate them so people can see what I just did. So, for instance, you saw me just doing this, and then I got pissed off and God–

Cassie: Then you need to do it. Yeah.

Ashley: The best way I can explain it is I feel a tug, like a string from the bottom of the cup to my chest. And, it has to fit right. Otherwise, I’m going to have a heart attack and died. It’s really–

Cassie: Interesting.

Ashley: And, I can feel it.

Cassie: Yeah.

Ashley: And, I’ll sit here and start taking out. And, people say, they’re like “It’s Tourette’s.” And, I’m like, “I’m not diagnosed with Tourette’s.” They used to call it Tourettic OCD. And, my therapist says, “Yes, like it’s a presentation of OCD that looks like Tourette’s, but it just presents itself very similar.” And then, with the phone thing, I’ve thought about doing videos like this, but it’s just so nauseating to watch me flip my phone as I’m recording from my phone.

Chelsea: But, I kind of love that I can see how much you’re moving your phone around because it almost like, yes, you’re not seeing your phone go this way and that way, but I feel like it’s a really, really good illustration of how it feels like, “Nope, I got to look this way, and then I got to look that way, and then we’re going to do this, we’re going to do that.” And so, I kind of love it. I kind of like just watching that video.

Ashley: It’s funny I joked that I’m a bird, that anything shiny, anything perfect, it becomes this physical mechanism where I can’t stop looking at it. I’m engaged. I can’t wear my ring. If I wear my ring, I can’t focus all day. Because all I do when I’m typing is…

Cassie: Just looking in.

Ashley: Yeah. And, I love my ring. It’s not that I don’t like it, it’s that I put it on and I’m like, “Oh!”

Cassie: Yeah.

Ashley: Yeah, do it.

Cassie: Yeah.

Ashley: Alright, anyway.

Cassie: I’m like, fascinated already. I’m like, “This is going to be such a great hour.

Chelsea: This is great. I’m so happy.

Ashley: I have my phone in eventually because it’s going to die, but I’ll keep an eye on it.

Chelsea: Okay.

Ashley: Okay, great.

Chelsea: If you happen to sit here for a second, it’ll be okay. Alright, anyway–

Ashley: I disappeared for six months and I’ve survived. Choked on some way.

Chelsea: Alright. Actually, I kind of want to do a different intro into our episode.

Chelsea: So, Ashley, thank you so much for being on our show. We are so excited to get to talk to you. You have so much energy. And, we love you already. You’re amazing.

Ashley: I love you guys, Cassie and Chelsea.

Cassie: Yay!

Chelsea: So, can you tell our listeners a little bit about who you are? And, why you’re talking with us today?

Ashley: Yeah. Wow, I’m honored. So, I’m Ashley. I do a lot of stuff. Everything except math.

Chelsea: Yeah, you do. You do a lot of stuff.

Ashley: I work full-time in radio. So, I actually work for WSB-TV and Radio in Atlanta. We’ve been working from home for six months, which has led me to many existential crises. So, that’s been great. But, I do like client coordination. I do radio commercials. I work in entertainment full-time, basically. And then, part-time, I model, act, I do some voice acting, and I do a lot of writing. So, I’m actually trained as a writer and I freelance. But, it all kind of molds into this giant social media conglomerate dump of my brain.

And, the reason I think life has kind of led me to entertainment and to all these different creative aspects of my career is because literally from the day I was born, I was sick. I’ve just always been sick. I’ve always been chronically ill. It’s just been a constant in my life that has gotten worse as I’ve gotten older. And to kind of cope with that, I’ve turned to art and creating. And, that’s what keeps me going.

So, that’s kind of me in a nutshell. I have to burp.

Chelsea: That’s fine. We edit, don’t worry.

Cassie: We will either edit it out or we won’t because that’s fun too.

Ashley: I prefer burps being left in, but if you edit it out, I won’t be offended.

Chelsea: So, Ashley, can you tell our listeners a little bit about your chronic illness experience? What diagnoses you’ve gotten, symptoms that you have? We’re ready for it.

Ashley: I don’t think you are, but let’s just start from the day I was born. My mom was convinced when she was pregnant with me that I wasn’t going to make it and the doctor’s kind of were worried about it, too. And, I very much believe that your life, those first moments kind of dictate a lot. And when I was born, my whole arm was blue, and the doctors took me from her and we’re like, “There’s something wrong with this child, but we don’t know what it is.” She said, for three days, all she heard was screaming. That’s it. They wouldn’t let her leave. They kept running tests. They couldn’t figure it out until finally she just took me and went home and said, “FU guys, it is 1993 and it’s obvious that you can’t figure it out, so bye.”

From then on out, I think the strep infections started almost immediately. I don’t know if it was age one or age two. I think it was two that the severe strep infection started, which at first my mom was like, “Okay, kids get strep.” But then, it got to the point where it was almost like scarlet fever level. And, I was getting it two to six times a year. So, for 20 years, from the age of two to 21, I got it like two to six times a year to the point where it was just normal for me. They would give me Z-Paks and Azithromycin and all kinds of antibiotics to the point where I was 10 years old, and I knew the names of everything.

And so, I started presenting with strep. And then, around four years old was the first time I remember getting my first OCD sort of moment. It was very sudden for me. It was like the onset was just quick. And, that’s what you see in a lot of these kids. And, I’ll go into that in a second. But, I was laying in my bed, and I got a little spit on the center of my bedsheets. It was so traumatizing. I remember the exact night and thought mechanism. It was if I don’t spit a certain number of times in this bed until it feels right, the man, it was a man who was going to buy my mattress. Forty-two years later, he had a wife and kids, and he was going to buy my mattress and sleep in it and he was going to die from the virus in my spit on my bed unless I spit a certain amount of times again. So, I kept spitting, but compulsively because I thought, “If I can get this to where it feels right, I’ll protect the man in the future who buys my bed, and this kid will have a dad.” And, it got to the point where I had just a puddle of saliva in my bed that I had to sleep around. And, I didn’t tell anybody about it because if I told someone about it, it was almost like the job wouldn’t be done. I had to keep spitting.

So, from then on out, it just got worse. I had to tap things. I had to wish that my grandfather would die so that he would be protected and not die. And, I had to say it out loud. He was coming for my sixth birthday and I had to stand on a chair and say I wish he were dead so that he would live. And then, he died the year that year and I was like, “It’s my fault.” It was just a lot and it got to the point where I thought I could get AIDS from a toilet seat. I got AIDS tested in college for no reason because I thought that I could have it. It got to the point where it was getting worse and worse and worse. And, people kept telling me, “You’ll grow out of it, it’ll be fine.” I never got therapy.

And then, the tics started coming on strong five years ago, I would say, the physical twitching. I would start hitting myself and I couldn’t stop. I couldn’t stop moving. My fiancé would have to like hold me down, so I didn’t hurt myself. And then, I just got more sensitive to things like that. If I talk about it, it gets worse.

So then, I was diagnosed with Hashimoto’s thyroiditis. So, I have positive antibodies in my blood that attacked my thyroid, which is pretty much under control. I’m on thyroid medication. My levels are normal, but that diagnosis came a few years ago. So, I’m like, “Alright, so I have an autoimmune disease. I want to keep an eye on this.”

Sorry, if I jump all over the place.

I got my tonsils out at 21 because my last strep infection was so bad that my throat closed up to a point where I almost had sleep apnea and could have choked on my tonsils. And, the fevers were 105 degrees every night. So, I got them taken out and I haven’t had strep since. But, my strep antibody tests have come back high a few times, even though I haven’t had it.

My current doctor–I go to called CentreSpringMD. It’s an interdisciplinary medicine doctor. She believes and she is treating me for PANDAS. She can’t technically diagnose me with it because the test is $1,000. And, because I don’t have strep at this moment, it might not even be accurate. So, she was like, “Instead of charging you $1,000 for a test that might not even come back to something I can use, I’m just going to treat you for it.” Basically, what she thinks happened to me is for 20 years, I had pediatric autoimmune neuropsychiatric disorder due to strep infections.

Chelsea: So, that’s a name?

Ashley: It’s a name, PANDAS. It’s the acronym.

It’s one out of 200 kids. This was my theory from the beginning with COVID. This was what I was scared about. I think I heard of at least a few cases in New York of children getting encephalitis of the brain when they got COVID. I’m not a doctor, I don’t know the link between this, but with PANDAS, what happens is you get strep, and the strep triggers an autoimmune response from your immune system that attacks your basal ganglia and causes brain damage that causes OCD, Tourette’s, tics, movements, you lose motor control.

A few years ago, I started not being able to control my handwriting as well. And, it’s not horrible, but it’s to a point where I would get shaky trying to pick things up. And, my grandmother died of Parkinson’s. And, I was like, “I’m shaking. I don’t like this.” And, I went to a doctor at Emory. They took a bunch of MRIs. They couldn’t figure it out. And then, I was sitting there, and they were having me do all those movement test and walk up and down and all that stuff. And, she just kept staring at me. I was like, “What? What are you looking at, Nancy?” And, she just kept bringing in nurses and doctors. And, she was like, “Come look at this. Let me get an intern in here.” And, I was like, “Can we not?”

Chelsea: “Can you tell me what you’re thinking about?”

Ashley: Yeah. And, they couldn’t figure it out. And, they were like, “We think you need to see a psychogenic movement disorder.” And, I looked it up and it was basically all in your head. And, I’m like, “Alright, that’s cute, but I really want to get to the bottom of what’s going on without spending a ton of money.” I had doctors at Emory that claimed they had done every test that they could possibly do. This was before I was diagnosed with Hashi’s. And, I knew something was autoimmune. My gynecologist said it was definitely autoimmune, but she couldn’t figure it out. Nobody could figure it out. And, the doctors were like, “Have you tried working on your depression? We’ve tested everything that we can test.” I was like, “I’m sorry that I just don’t believe you.” And then, I went to a different rheumatologist, diagnosed me with Hashi’s, diagnosed me with fibromyalgia, IBS. And then, of course, I have OCD. I’m diagnosed with depression, but I work on that shit.

And, this PANDAS thing, it was an answer, and it wasn’t because she can’t formally diagnose me with it because for one, when I was born, the disease wasn’t recognized or discovered. It was discovered in 1998. I was born in ’93. So, by the time that I started displaying all these issues, science wasn’t even there. And, even after something is discovered, it takes decades to even understand it, basically.

So, to this day, doctors don’t recognize PANDAS as a formal diagnosis a lot of the time even though it is. These antibodies and this mechanism has been discovered in kids. But then, on top of that, the time they diagnosed me was when I was six or seven, or even a teenager when I had strep and it was flaring, and they could see the test results.

Now, I’m almost stuck with this most likely that I’m being treated for, that I want to be able to be open and talk about because it explains everything. But, it’s hard because I always put that disclaimer like “I’m not technically diagnosed.” She’s convinced. She’s 99% there. She’s treating me for it. She considers me a PANDAS patient, a PANDAS adult patient. But, it’s still considered a pediatric disease. And, I’m 26. So, I’ve kind of got to just assume that this happened to me for 20 years, and that’s the repercussions of what I’m living with.

Cassie: Wow.

Ashley: Yeah. It’s a lot to–

Cassie: But, there’s definitely a correlation. I think. And, I want to say, I don’t know. I know, a lot of people will be able to relate and the fact that you can’t have this definitive diagnosis of PANDAS because that’s just still the case for so much. With Lyme, that’s a huge example of where so many people cannot get potentially a positive Lyme test because you have to get that test when you get bit by the tick. And, a lot of people don’t even know they got bit and all this stuff. And so, there’s all this. You said doctors may not credit it and everything because of the testing, and yet it’s like, “No, Lyme is real, Lyme exists.”

Ashley: Yeah.

Cassie: You have it. And, even like–

Ashley: Right because this is how I feel. Figure out a way to credit it because this needs–

Cassie: Yeah. Yeah, exactly. Endometriosis is another huge one that you usually have to have surgery, laparoscopy to definitively diagnose that you have endometriosis. But, there’s thousands and millions of women who are like, “This is what’s going on.”

I know that a lot of people are going to relate to you where it’s like, “I’m being treated for this. They are sure it’s this, but there’s some kind of faulty test system or whatever that won’t let it be a definitive diagnosis.”

Ashley: I think you posted something the other day about like that in between. I can function and I can mask it. But, right now I’m okay, but this morning I woke up and for two hours. So, I woke up at 10:00. It was about 11:30 before I could even get out of bed because my throat hurt, my whole body hurt, my brain was foggy. I couldn’t focus. I felt like I had the flu. And, that’s every single day. And, it got to the point where I’d wake up and couldn’t get up my stairs or I’d be covered in rashes. I would get the butterfly rashes everywhere. People were just like, “But, you come to work and you’re so happy.” And, I’m like, “Yeah, because I’m distracting myself.” Like, “Why do you think I’m on social media 24/7? It’s not because I have to have attention from other people, it’s because I feel less alone. I feel like shit when I’m posting.” But then, when I post something and people are like, “This is cool,” I’m like, “Huh, I guess I can be cool even though I feel like throwing up right now.”

Cassie: Yeah, I totally get that. And, that post also really spoke to my heart where it’s like, “Yeah, you’re not sick enough to be where everyone knows that you’re sick, but you’re not well enough to be functionable.” Because even as you were talking, I’m sitting here, I’m only sitting on my left butt cheek, my right butt, I can’t put any pressure on, and then additionally, I feel I can’t catch my breath today and I also feel my ears are clogged, my throat kind of hurts, and I feel someone is trying to squeeze my head into a helmet that is too small. And then, I sit there, and I’ll be like, “I just need some more water. This water will make me feel better.” And, I’ll–

Ashley: I would never know that. I’m looking at you, you look great. But, it’s just as a chronically ill person, you look around you and you see the person, but then you’re also like, “I wonder how they feel today.” And, that’s not what everyone does. Most people don’t do that. They just look at them and go, “Oh, they look cute.”

Cassie: Yeah, yeah. And, that’s exactly part of the message that we’re wanting to spread. Why we’re like “The Real Life Show” is kind of those real-life moments of just yeah, I’m sitting here, and I had these little snacks where I’m like, “Okay, will I be less nauseous if I eat? Or, maybe I shouldn’t eat anymore?” Then I’m like, “I haven’t eaten for like 16 hours. I should probably eat.” Maybe that’s why my head feels pressured. And, you’re going through all that.

Ashley: You can never tell where it’s coming from. Is it because I haven’t eaten or is it because I feel sick? Which one is it? I can never tell. And then, with all this COVID stuff like, “Do I have COVID?” “No. Bitch, calm down.”

Cassie: I know. But that’s for real. I mean, there is a moment that I sat there like, “Oh, my god, is it this?” My mind will get stressed out because I’ll be like, “Shit, I have to work tomorrow morning.” I feel crap right now and I have to work tomorrow morning. What am I going to do?

Ashley: Yeah.

Cassie: And then, the next day can be a completely different day. I could feel fine when I wake up or I could feel death walking. And so, like you said, there’s a connection to be made when you do talk about this stuff on social media. It is a distraction. So, sometimes when you’re just like I don’t even want to be in my own head right now, so I’m going to scroll the gram and I’m going to either be like “I’m not alone, other people are going through this too” or I’m going to be like, “Yeah, I want those cute shelves in my room too and I love that outfit. And, yes, if I buy this, I will feel better.”

Ashley: People don’t understand. I work in media full-time. It’s what I love, and I love it for a reason because if I feel sick and I’m in bed and I can’t move, I can still be productive. I can sit there and post or I can work on a website, or I can help a client write a blog, or I can listen to a podcast, or I can record something. I don’t have to get out of my bed and drive or walk or do anything. I mean, it’s a sense of freedom. Being able to pick up your phone and see whatever you want, do whatever you want, interact with your friends, it’s freedom for somebody who moving your body hurts. You can practice with your mind and your creativity without having to stress your body out if you need to rest. It’s nice. It’s just nice.

Cassie: It is freedom.

Ashley: When people hate on social media and say like, “Oh people just want attention. Social media generation,” I’m like, “What’s wrong with attention? When did attention become bad?”

Cassie: Yeah, that’s true.

Ashley: Don’t get me wrong, there’s a difference between basing your entire life on the attention that the people give you and then wanting to give and receive positive attention. You tell someone “You look great today” and they’re like “Wow, Queen, thank you.” What’s wrong with that? That’s great.

Cassie: Yeah, 100%. And, I know some people might be like, “Well, it’s just like it’s such a fake world out there.” And it’s like, “Well, you know what, at least for our account, it is authentic AF.” Chelsea and I are the only people on our social media. We don’t have a social media team or anything that. Not that there’s anything wrong with that. But, we are interacting with our people. We text each other about a comment that was left or DM, and we’re like, “Oh, my gosh, can you believe that so and so is going through this?” or whatever, it is authentic for us and it is connection, and we feel those people are in a sense like partly some kind of family with us, like our community.

So, yeah, I totally feel you. I mean, Chelsea and I are in total agreement with you about that.

Chelsea: I like social media and I love the conversation we’re having right now. I mean everyone has days where they wake up feeling crap, they feel tired, or their body hurts, or anything, but it’s not my everyday. And so, getting to hear stories that you both are sharing right now like “Yeah, I feel like shit today” or this, it’s good for me to hear. And, I hope that other people that are listening that maybe don’t have a chronic illness diagnosis that they can listen to it and they can better empathize and better understand that not everyone is going through the same shit every single day and that’s okay. Everyone’s shit that they’re going through, whether it’s good or bad is completely valid, but I think it can help how people empathize.

Ashley, I really loved how you said if you’re chronically ill, you look at someone and you’re like, “Oh, yeah, look cute.” I wonder if they feel OK today where someone else might look at them and like, “Ah, cute.” And, that’s as far as their brain goes. And so, I know Cassie and I are really passionate about normalizing the experience of having a chronic illness because I mean out there, if you start asking people, most people have some sort of chronic condition out there.

Ashley: You really do.

Chelsea: I kind of think that that’s more the norm than not having one.

Ashley: It’s because they’re older. If you hit a certain age and you haven’t had something, I’m like, “Wow, what did you do because I want to do that?”

Chelsea: “What did you do? What are your genes?”

Cassie: Yeah.

Chelsea: I know if down the road the mind process that we go through when we see someone goes too, I hope that they feel okay today would be so, so, so huge. Because, one, I think it would make the world a better place. We’d all be so much nicer and more compassionate with each other compared to just, “They look fine on the outside.” And, Cassie posted about this in our social media recently we both struggle with anxiety.

Cassie: Yeah.

Chelsea: So, there’s days on the outside I look completely fine, on the inside, my head is like, “Ugh.” And, I’m like, “Holy fuck, holy fuck, holy fuck.”

Ashley: Anxiety is a chronic illness. Anxiety is a chronic illness.

Chelsea: And so, mine doesn’t impact my life on a daily basis. It’s never kept me in bed all day, it’s definitely an extra layer. And, everyone’s got something.

Cassie: Yeah.

Chelsea: They’re struggling with, “How do I pay my bills? How am I going to help this person?” Everyone got something going on in their life that they’re worried about. And so, I love that idea of don’t just look at someone for how they appear on the outside. Think about what’s going on inside their head. How do they feel?

Cassie: Plus, there is also a while ago, but I still have it saved in my camera roll. It was like, “But you look great. #sicknotugly.”

Ashley: Right.

Cassie: And, I was like, “For real though.”

Chelsea: Yeah.

Ashley: Sometimes these are days. By the way, I never point them out, I just do them, but looking out my window, it’s hard for me to maintain eye contact. I look out where light is and then I’m touching my chest, but you can’t see that.

Cassie: How interesting. I didn’t even noticed you looking away.

Chelsea: Yeah.

Ashley: Yeah. I work it in. That’s why I try to say that mine is more Tourettic OCD because I can’t control it happening. But, the process of doing it, I feel there is a little bit of control in how I do it. Because I know I need to get it done, so I can’t control that I’m going to do it, but as I weave it into conversation, my brain has gotten smart about masking it.

And, I don’t have Tourette’s, I won’t speak for people with Tourette’s. So, if this is wrong, don’t quote me. I feel with Tourette’s, there’s less of that ability to control how you do it, it just happens in that moment. I don’t know though. I’m just speaking to me, but I was going to say about #sicknotugly. First off, I don’t think anyone’s ugly, but I think that’s hilarious. And, I also think that on the days where I feel my sickest, sometimes I wake up and I put on a bunch of makeup and some really cute clothes because I want to feel better. So then, when people see me looking really good, they think I’m feeling really good. And, a lot of the times, the correlation is the opposite because they find I’m feeling really good. The last thing I want to do is put on a bunch of makeup. It just depends.

Cassie: Okay, 100%, literally that’s what I did this morning. So, when I was waking up and I was like my ears feel weird, my head, I really do feel like someone is trying to squeeze me into a medieval suit of armor and everything is heavy and squishy.

Ashley: Sorry, I got to stop doing that.

Cassie: Right. People do have to stop doing that. And then, I was like, “I don’t want to like do anything.” And, I was like, “No, I want to show up for this podcast.” And, I went, and I put on some eyeliner and a little bit of highlighter. Because then, I’m going to feel better. So, I literally did that this morning too.

Ashley: Girl, that’s what I did. I woke up, I looked at all the red spots on my face and I was like, “Maybe, I shouldn’t have popped those last night.” But also, I feel like, “Crap, let’s just put on a little makeup.” And, yes I look like Casper, the Friendly Whore, but also it’s kind of cute.

Cassie: Casper, the Friendly Whore.

Chelsea: I like this because to me, the days where I feel extra tired and not very good, I’m like, “Yes, I’m putting on my company’s clothes. I’m wearing my glasses. I’m putting my hair up in a bun.” I’m like, “I don’t care.” I literally don’t give a fuck. I’m just, I’m comfy. But then, the days where I’m like, “Yeah, I feel really good, I feel confident, I feel happy, I feel excited,” those are the days where I’m like, “Alright, I’m going to get my cute clothes out. I’m going to do my hair. I maybe will put some jewelry on.” And so, I think that’s interesting that it’s like you’re–

Ashley: It’s like opposite.

Chelsea: Yeah. If you’re used to having to deal with not feeling good, because if you don’t feel good more often, yes, you’re going to come up with coping mechanisms to make yourself feel a little bit better. And so, I think that’s so fascinating. That would be a little bit opposite for me.

Cassie: Ashley made a good point of saying that if you are feeling good and you have that bit of energy, you use it for something else.

Ashley: Yeah.

Cassie: I also would be like, “I’m going to fucking work out today.”

Ashley: Yup.

Chelsea: Okay. So, now, anytime I see someone that’s like their makeup is perfect, you maybe like, “You’re feeling good today.” “You’re not feeling good, right?”

Ashley: “Who hurt you today? Who hurt you?”

Chelsea: “You alright? What do you need?”

Cassie: Yeah.

Chelsea: Well, we can hug with COVID.

Cassie: I also want to make #casperthefriendlywhore. I’m just kidding. I need to text my friend because she loves the kind of pale skin. That’s her look. Man, she will not go in the sun without a hat. Love her. And, I really want to be like “Dude, this is your thing.”

Ashley: I used to be tan. I used to be a collegiate cross-country runner. I used to run 60 miles a week in the sun. And then, about five, six years ago when this shit really started to hit the fan, people were like “What happened to you?” Because I got so pale, I couldn’t run anymore. It was hard to get up my stairs, but I looked at my skin and I was I have less wrinkles. Okay, I mean, there’s a silver lining.

Cassie: Dude, every year that she gets older, she looks younger quite literally. And, everyone in our friend group or even distant friend group all talk about how beautiful her skin is. And, this is a shout out to Jessica if you’re listening.

Ashley: Jessica she called you out. Casper, the Friendly Whore.

Cassie: She’s one of our first interviews. Yeah, she was, and she has the best skin on Earth.

Chelsea: I’m really pale and this is making me want to go wear a hat outside more often.

Cassie: Dude, you should. It really is the trick. I’m actually more olive skin. I’m actually a bit darker in that sense anyway. She does yell at me, she’s like, “Put a hat on” and I’m like, “I want all the sun.” I’m a Leo. I need to bask in it.

Ashley: Leo. I’m a Scorpio. We’re crazy as hell.

Cassie: I don’t think I know any Scorpios.

Ashley: Oh, that’s funny because everyone I know is a Scorpio and it’s probably why I have no friends. We can’t get along with each other.

Cassie: Really?

Chelsea: It seems like getting strong personalities together in the same space is hard to deal.

Ashley: It’s this rare combination of we’re probably all going to create something amazing and save the world and then tell each other to fuck off right after. That’s exactly what a Scorpio group is.

Cassie: I love that. I love that. Yeah.

Ashley: We like to have the reunions to talk about the thing we made and we’re middle finger in each other across the aisle. Yeah. Good.

Cassie: Oh, my gosh. I love that so much.

Chelsea: Hey, everyone. I know you’re all cozy listening to our episode, but I wanted to take a moment to let how you can become even more cozy with some spoonie merch.

Alright, so we got a merch store. Hopefully, you’ve looked at it. If you haven’t, that’s okay, that’s why I’m telling you about it now. We got some cool stuff on there. There are sweatshirts. There’s long sleeve shirts. There’s T-shirts. There’s tank tops. There’s stuff that just says, “The Real Life Show: Living with a Chronic Illness.” So, you can rep our podcast. But, there’s also stuff on there to just celebrate the spoonie life you are living.

We’ve got comfy stuff. This is my all out of spoons outfit. So, when you’re not feeling your best, you can get all comfy cozy with a shirt that tells the world that you ain’t feeling great and leave you alone, if that’s your thing. We’ve also got stuff to help inspire you. I have a long sleeve shirt from our merch store that says, “Dream, be happy, seek fulfillment, live your best life.” And, every time I put on that long sleeve shirt, I just feel so inspired and ready to take on the world and it just reminds me that there’s great stuff happening.

So, if you are interested in getting some spoonie merch of your own, you can either head over to our website, therealspooniesunite.com, or the easiest thing is honestly just to swipe up or swipe down or whatever direction you need to get to the show notes because the link will be there. Now, back to the show.

So, Ashley, you started talking about this a little bit earlier of how you mask your OCD symptoms because the entire time we’ve been talking, we see you on video and it just seems you’re talking. You’re just talking to us. And now, you’re moving your phone, which I love being able to visually see, I have to do this. I think it’s the best visual representation.

Ashley: I just say it’s good, bad, good. So, I like odd numbers. I really have no control over what number feels good that day. But, for the last five years, it’s been threes. I don’t like that. So, basically, the best way I can describe it is that if I do this wrong, I can feel the pull in my chest, and it feels like something hurts. But, it’s good, bad, good, and then two sets of two to make bad, good, bad, good. So, I do the phone three times. That’s a good, and then a set of two makes bad, good, and then another set of two makes bad, good. And that’s three, two, two, three times. Everything lines up.

And so, my life kind of works in that set of odd numbers. So, 3 three times is 9, 9 three times is 27, 7 plus 2 is 9. Everything around me has to fit into that triad of 3. And, that’s where I’m at right now. My life has been a phase of numbers that I like and don’t like. And then those numbers trickle down into my tics, into my tapping, into my looking out the window, into my looking in the mirror, into clicking my seatbelt, into everything I do that requires some type of physical motion. The last few years have been groups of three.

I remember as a kid, it was groups of four, so 16 was good, four, and two, and eight. But now, things that are even make my blood boil half the time. It’s interesting.

Cassie: Yeah. So, I kind of have a question. So, you have a fiancé.

Ashley: I do.

Cassie: How long have you guys been together? And, I’m curious if do you need to impart any of this on him like him doing stuff certain ways? Does it bug you? How does that work with someone else living with someone else?

Ashley: And, I’m sorry I don’t know if Chelsea you had a question that I interrupted.

Chelsea: No, I was saying how you mask it which is kind of what we were still talking about.

Ashley: Got it.

Chelsea: I’m switching the topic, sorry.

Ashley: So, I do have a fiancé. We’ve been together going on eight years.

Chelsea: Yeah.

Ashley: Eight years. We’re old. He’s lovely. And, I would say that no, it doesn’t bother me when other people do things. And, this is something people don’t understand. They’ll do something and they’re like, “Oh, did that bother you?” And, I’m like, “No,” “Are you stupid?” Okay. Because they keep on asking, like seriously? A lot of mine is very physical. So, it’s the feeling of what I’m doing. So, when I tap a doorknob, I feel it in my fingertips, and it feels wrong. So, I’ve got to tap it a second time. And then, to even it out that third tap, everything goes back to normal. But, if my fiancé taps a doorknob, I don’t feel it. The vision of it doesn’t bother me. And, it very much depends on the cork because I tried to sit down one day in college and write out all of them and I got four pages deep, front and back small handwriting and I couldn’t do it anymore. There’s too many of them. But, a lot of it these days is extremely physical. So, if he does something, I don’t feel it in my body, so it doesn’t bother me as much.

Now, if I hug somebody, if I hug him, that I feel and I have to hug him three times. Or, if somebody shakes my hand, if somebody touches me, they’ll have to touch me again because I felt it. But, if they tap something, I don’t feel it. There’s a lot of different ways to categorize OCD. And, what people don’t understand is there’s OCPD and there’s OCD. So, there’s obsessive-compulsive personality disorder, which is, “I like my book straight and I like things color-coded. And, I would prefer to make my bed every morning because it bothers me if it’s not made.” That’s OCPD. That’s a personality thing and it’s something that most people have. Most people do a lot of that stuff and it can be more severe or not. And, people confuse that with an obsessive-compulsive disorder diagnosis, which is what I have, which is a combination of everything I’m describing to you physically and intrusive thoughts.

And, I have those too. I used to have those horribly as a kid, as a teenager, and I still have them. But, thankfully with talk therapy, those have been replaced mostly with these physical compulsions. But, the physical compulsions, for instance, the heart attack, if I don’t do something, I feel I’m going to have a heart attack. That heart attack is an intrusive thought. A lot of the thoughts are sexual, violent, they have to do with disease, death. My entire life I’ve had nothing. But it tends to be the opposite of what you want. I would go to sleep crying at night as a kid because I would be attending my family’s funerals. That’s not normal.

I would see people die violent deaths in my head or I would see myself murdering people as a 12- or 14-year-old because I stayed up too late watching “America’s Most Wanted” and then my brain was like, “If you don’t tap this doorknob, somebody is going to die because of you.” And, that’s the shameful part a lot of people don’t talk about. OCD can be all these tics and compulsions and numbers like I do. But, it can also be a combination of that in the intrusive thoughts, which is what I have, or it can be purely the intrusive thoughts with no physical components, but I have both. I’ve noticed that people tend to think OCPD is OCD and they also tend to think that not making my bed or not washing something is what sets me off, and that’s just generalized.

And, the shame comes in when people with severe OCD don’t want to say, “Hey, I walked past somebody walking a stroller and had a vision of me running them over and I cried for 30 minutes in my car on the way home because I would never do that and my OCD made me see it.” Don’t get it confused. It’s not a compulsion to do that thing, it is purely an image in your head that your brain is forcing you to replay over and over that you would never want to see and you have to watch it like a movie and it’s traumatizing, especially as a child when you would never hurt a fly and your brain is replaying gory images in your head because you have to watch it again and again.

And, that’s the shameful part that nobody wants to admit because people would be like, “Oh, like you’re a sociopath? Oh, you’re crazy.” It’s like, “No, those are not things I want to be seeing, but if I don’t tap this doorknob, this person is going to get AIDS.” There’s no rational way to explain that to most people when they think that OCD is making your bed.

Cassie: Gosh, you have explained this so eloquently and beautifully. I feel like I have so much more of an understanding of what OCD really is. And, I had no idea about that being part of it.

So first, thank you for sharing all of that to that depth, because I completely understand why you need to bring awareness to this so that people can have a better understanding because you’re right, I think the common thing is, “Oh, yeah, that’s going to bother you in your mind if that’s not just writing a bookshelf and all that.”

Ashley: These kids think they’re monsters. I grew up my whole life thinking I was a monster. Nobody thought like me. I was alone. I was a horrible person because your OCD convinces you. There’s a huge, huge guilt complex, especially as a kid. And, I had this thing where I had to admit everything I did wrong to my mom. Otherwise, I was just the worst person to the point where I wouldn’t even do something wrong and I would be admitting something someone else did just in case I did it. There’s a huge guilt complex. And, I think that the shame comes from because who’s going to want to sit there and say “I envisioned myself jumping off a cliff today, but I’m not suicidal, it’s just the vision that keeps replaying in my head.” Who’s going to admit to that without some level of “Wow, people are going to shame me.”

Cassie: Yeah.

Ashley: So, nobody talks about it because it’s easier to let people think. I find myself joking about it like “Ha-ha, I’m so OCD” because it’s easier to let people think it is about making my bed and it’s not about blood and violence and tapping and diseases. It’s easier for people to think that my brain is just clean.”

Cassie: Yeah. So, like you just said you would talk to your mom about getting this out, what age were you and what was it like when–I guess maybe I want to ask, was there a time that you were able to start being open about this and then help kind of came in or did your mom take you somewhere, then you were like, “Oh, my gosh, this is what’s going on?” What was your process of getting your diagnosis for OCD?

Ashley: So, I was out of my house. I didn’t receive therapy as a child or a teenager. When I graduated high school, I went to college. And, the first, six months of my college career, I was okay. Mostly because as you grow you–and this is for anybody with a chronic illness and mental illness, you adapt. You adapt and it seems normal to you. And then, as things started to get worse, I started to kind of spiral a bit. I had a break-up. I had a lot of depression. I never had a drinking problem, but I started partying a bit more. And, I have a history. This is also not something I usually talk about because a lot of people have judged me about it in the past, but I grappled with eating disorders as a teenager, which with the PANDAS thing, PANDAS can cause kids to just stop eating it. A lot of this stuff, it just kind of comes full circle. We get blanketed with depression and eating disorders, but it’s like, “Where did those things come from?”

Cassie: The root cause.

Ashley: Yeah, what’s the cause? And so, this brain condition I may or may not have causes kids and teenagers to just, “I don’t want to eat today” and it leads to eating disorders. And so, as that started to get worse, I was like “Alright. So, I need to see somebody because when I get sad, I stop eating and I can’t control it and I don’t understand it. I don’t want to be that way.” So, I started seeing a therapist when I was 18, 19. It was shortly after I started dating my fiancé. And, I started to go regularly. And then, for a couple of years, I bounced back and forth between a couple of different therapists until finally, my weight hit a point where I wasn’t making progress and I was like, “I need to go see somebody for real about this whole not eating thing.”

In college, I signed myself into an outpatient facility for eating disorders and they did a full psychological evaluation on me. And, the psychologist diagnosed me with obsessive-compulsive disorder, EDNOS, and I think minor–I can’t remember if it was minor depressive disorder or whatever they used for some type of depression. And so, I have the treatment there for 3 months. And then, after that, it was another tale of trying to find a therapist that really worked for me until I settled on the one I have now for the last few years.

So, that was around between 18 and 22. And, at 21, I got my tonsils out. And, around 21, 22 kind of within that range, I always knew I had OCD, but the technical paperwork, I think, was signed when I was 19 or 20, something around there. But until that point in my life, I’d kind of just had this the entire time. Teachers in school but try to send me to special groups. In 3rd grade, they don’t say, “Hey, we’re sending you into a school psychologist,” they say, “Hey, there’s this special class that all these kids go to because they’re really cool and I really want to go.” And, my parents would be like, “No, there’s nothing wrong with my kid.”

And, they didn’t know any better. They’re very much like a don’t-mess-with-our child therapy. You can mess with the brain. So, that was kind of my childhood growing up. People trying to do what was right by me making me feel normal when in reality there is no normal. And, we all have to have help based on our specific needs. A lot of that makes me really, really scared to be apparent one day. It’s like I’m 26 and one day, I do want to have a kid. And, I’m like, “Well, the chances are with my background, this child is going to have some hurdles.” And, I really hope that my hurdles don’t get in the way of their hurdles and then I don’t want to say anything that makes them upset. And, I’m like, “Stop overthinking it, bitch.”

Cassie: I know, but that’s true story. I’m a mom. I have a 12-year-old. I mean, I definitely have fears because my mom was really sick. My mom died at the age of 55. Then, sometimes I’m like, “Oh, my gosh, it’s my line of genetics like ‘no bueno.'” And then I’m like, “Is he going to have something like what I have?” And, sometimes it’s a fear. So far, he has shown none of those signals. And, I just remind myself everything’s fine. But, when you get afraid and this goes for all parents, any parent that is listening or to be future parents, it’s like you get so afraid of, yes, putting your stuff onto your kid or like you said, your things in your obstacles, is it going to get put on them?

And, there is a moment in time. And, this is just two years ago that I almost had a moment. I don’t remember where I actually got this from, but I got it from someone, maybe listening to a podcast. And, they were basically like just accept the fact that you are going to make mistakes in the sense that your kid is going to love certain things about their childhood, and you as a parent, and there’s going to be things that they want to change. And, that’s just the way it is. And, I was kind of like, “Oh, my god, my mom was the best mom ever and the best person walking in Earth.” And, yet there still things that I would have done a little bit differently and it doesn’t take away from her as a parent at all. Not even in the least. And, I was like, “Wait, okay, that’s how this goes.”

And so, anyways, for any parents who might be listening, that’s just a little tidbit that helped me.

Ashley: Thought you were 25, but whatever.

Cassie: My god, I’m 32. But, I do look a lot younger than I am. I have kind of a young look, which I’m hoping that that keeps lasting me into like, you know. But yeah, I’m 32 and yet most people do think I’m early 20s. And, I’m like, “I have a 12-year-old.” And, they’re like, “Um.”

Chelsea: Like what?

Ashley: They’re like, “Let me back it up. But, even if I back it up to as early as I think you are, you’re still having a kid at 13. And, that doesn’t work.”

Cassie: At the school though sometimes I swear to God going in for parent-teacher conferences and I’ll just make sure that I have my slightly deeper voice.

Ashley: Yeah.

Cassie: You have really good vocabulary just to kind of feel like, “Hey, listen, I’m older than I look, okay?”

Ashley: Draw in a few wrinkles on your forehead just to kind of fake it.

Cassie: I know. I’ve been waiting for the little crow’s feet around the eyes to be like, “Yes!”

Ashley: We just pissed off so many listening, I’m sure.

Cassie: I know, for real. But, I have one gray hair. There’s one of them.

Chelsea: It’s like there’s one somewhere in there.

Cassie: There’s one. And, I’m like, “I’m not pulling that sucker out, I need it.” It gives me credit.

Chelsea: I like that. You keep that fucker in. We all need that one fucker.

Ashley: That’s right, exactly. Oh, my gosh, I need the street cred.

Cassie: I know, I need the street cred with my one gray hair. Yeah, and a lot of my clients if they later find out that I’m 32, they’re like, “Oh my god, I thought you were someone younger.” And so, anyway, that led me off of the train of thought that I had for asking another question. Darn it.

Chelsea: I’m good at that.

Cassie: Yeah. Chelsea, do you have any while I try to remember mine?

Chelsea: Pointing out that I’m looking out the window.

Cassie: Yeah. Okay. So, you got this diagnosis after finding somebody. Because I was kind of curious about what age you got that diagnosis obviously with living with it for so long.

Ashley: Yeah.

Cassie: And then, you talked about the Hashimoto’s and the IBS. But, you were saying that you’re on a medication and so that is doing well and kind of in control, which that’s huge, that’s really nice.

Ashley: The thing about the Hashi’s is I feel a lot of women– And, this is something that I hate. A lot of women have to be out of control before they’re diagnosed with Hashi’s. They don’t test for Hashi’s and then test your thyroid, they test your thyroid. And, until it’s dying, they don’t test for Hashi’s.

Cassie: Yeah.

Ashley: And, for me, they always tested my thyroid levels, but because they were normal, they never tested for Hashimoto’s even though I have a family history. And so, I was like, “Why aren’t you testing for everything?” And, they’re like, “Well, your levels are all fine.” I’m like, “That doesn’t matter. When you’re testing for the autoimmune disease, you’re testing for the antibodies to see if it’s there. I want to know if I have the disease, even if it’s not killing my thyroid yet. One day it probably will when I’m 50. And, if I can start taking care of it better now, let’s do that preemptively.” My doctors were like, “Well, if your thyroid is not out of whack like that, yeah, there’s no way all your symptoms would be due to that.” And, I’m like, “Well, I feel like hell and you haven’t tested for this thing.”

And, I went to a new Doctor who tested it without even asking me and it was positive. And, he’s like, “Just because your levels are not off yet does not mean that your thyroid is not going to die. It’s on a slippery slope and one day it is not going to work.” And that’s just the deal. Let’s milk it for what it’s worth, as long as it’s working give you a little bit of the thyroid hormone to help it stay alive longer. But, the bottom line is through possible pregnancy, and through the rest of my life in middle age and menopause, there’s going to be some big issues that I didn’t want to be surprised by.

Cassie: Yeah.

Ashley: So, not to mention the fact that a lot of women that I know they had huge problems conceiving because they add Hashi’s. And, the minute that they got on the medication, they got pregnant. And, in the next five or 10 years, I want to have a child and I’m trying, and nothing is working, at least I know this issue now and it’s being taken care of, so that’s not getting in the way. And, I say five or 10 years, it’s probably five years. Fuck, I’m 26. Shit. Anyway. I keep thinking I’m 20.

Cassie: I know.

Chelsea: I understand how you feel. I’m 26 too and we keep talking about having kids at some point. And, I have always been like, “Oh, five years, five-ish years.” And, then I realize like, “Well, if I wanted to have kids around 30, that is now less than five years away.”

Ashley: Right. You finally decided on the age of 32 to start. And, most women that I hear, they’re like, “That’s so old to start.” And, I’m like, “32?”

Chelsea: Is that old?

Cassie: No, my mom–

Ashley: The eggs are falling out of my body at 32, then, newsflash: I’m not having kids because something’s wrong.

Cassie: My mom was 33 when she had me. And then, one of my really good friends who’s got four kids had her fourth at, I want to say maybe 34 turning 35.

Ashley: I want to have a couple in that little few year range. I want to adopt one, then I want to call it a day.

Cassie: Nice. Oh, my gosh. I’m also really glad that you told us about your diagnosis process with Hashimoto’s because that is something that, I think, all people with chronic illness, especially autoimmune diseases like we all share that the diagnosis process is ridonkulous.

Ashley: It’s shit.

Cassie: It’s really bad, the things that you have to go through to get there. And, especially for thyroid stuff, I had hypoactive thyroid for quite some time and took a thyroid medication. This was a few years ago. But, to get the correct test, I ended up getting test results that showed that the thyroid was slipping kind of thing like you were saying. But, I had to record my temperature, morning, and night. And, I actually don’t even remember the whole process, but it was a week-long process. And, watching to see where the temperature was going and I would give this in at a certain point, then I went to get the blood test. And, that’s how we were able to track that it wasn’t right. And, a week later, it was right.

Ashley: Did they even test you for Hashimoto’s?

Cassie: No, they didn’t test me for Hashi’s.

Ashley: Eighty percent, 80% of hypothyroidism is caused by Hashimoto’s because it’s not the same thing. People think Hashimoto’s and hypothyroid are the same thing. No, hypothyroid it is just a side effect. Hashimoto’s means your immune system is attacking your thyroid. And, it’s this entire spectrum. Graves’ disease and Hashi’s are super similar. Your immune system is attacking your thyroid. And, in the first part of the disease for Hashi’s, your thyroid actually leaks hormone when it’s being attacked, which means that it could be higher and you could be getting skinnier and hot all the time. Then, slowly as it attacks to a point where it’s just dying and can’t work anymore, you start gaining weight because it’s leeched all of it out and now it doesn’t happen, and it can’t work.

Cassie: Yeah.

Ashley: So, really people are doing this ass backwards. They’re testing for all the symptoms. And, if you don’t have the symptoms, they don’t test for the disease. We should be testing for the disease first, then following the symptoms to a point because we can cut it off at the source that way. A lot of people who have Hashi’s may not even have symptoms yet. We don’t know.

Cassie: Yeah. I mean that’s really fascinating and especially the way that you’ve described it. Often with autoimmune stuff, it can come in threes is what they kind of say. And, finally enough, I had that hypothyroid. I went on a thyroid medication. It helped a little, then it was later that I got my Crohn’s diagnosis. And then, later again, after that, I guess it must have been around eight months later, I started an immunosuppressant.

When I got on the immunosuppressant, I started having all this crazy ass chest pain and we found out that I had to stop taking the thyroid medication because it was causing me this crazy bad chest–but I kept thinking I was having a heart attack. It was awful.

Ashley: Oh, yeah.

Cassie: And so, funnily enough, it was almost like the immun0suppresants treating my Crohn’s may have balanced out whatever was going on with the thyroid. And so, it’s just really interesting how the body works. And, with you having Hashimoto’s, do you have diet restrictions? Are you following a certain diet?

Ashley: Yeah. I am gluten-free 100%. And, I’ve had with the IBS, I know it’s gross, but I have multiple bouts of diarrhea every single day. It’s pretty bad. And, it got to a point where I was eating wheat, and gluten, and stuff, and to the point where I couldn’t even drive home. I was in so much pain crying. My stomach hurts so bad. I get bloated. I get gassy. I can’t digest things very well. There’s just a whole list of foods I can’t eat, which I personally feel led a lot to my eating disorder because food hurt. When food hurts, you don’t want to eat it.

People are so quick to judge girls who don’t want to eat. And, it’s like, “Can you please get to the bottom line of why they don’t want to eat?” Of course, EDs are a psychological thing. I’ve been diagnosed with body dysmorphia. I get it, but there might also be some underlying conditions where it’s like, “Well, how does your body feel right now?” And, for me, it’s like, “I’m on a strict diet but it’s really hard because most days I wake up and there’s safe foods I can eat, body-wise, how I feel.” And, a lot of foods are unsafe. I mean it really depends on how I wake up feeling. If I eat a full cooked plated food, I’ll be miserable and in pain for 6 hours. I’ll be on the toilet. I’ll be bloated. I can’t focus. I have to lay down in bed with an ice pack. I mean, I can just eat breakfast, lunch and dinner. Hot meals. It kills me. So, I have to snack and make sure I get in my calories with shakes and protein or whatever I can. But, I have to eat really bland safe foods. And, it’s not about weight, it’s just about pain, tolerance, and maintenance, and what I can do, what feels good.

Cassie: Yeah.

Ashley: Some nights I have ice cream for dinner because it feels better.

Cassie: Totally. I mean, that’s the thing. Sometimes I can tolerate freaking cake and cookies and pancakes and I’m freaking fine from that. And then, I go and eat a bunch of cooked vegetables with some chicken breasts and I’m miserable.

Ashley: Nope, can’t burp.

Cassie: Yeah. And, last night I ate some stuff that normally does pretty well with me, but I had a little variation. I put some green peas in there. And then, this morning I’m like, “Okay, I don’t think I can do that anymore because I’ve been to the bathroom eight times this morning before we got on the call.”

Ashley: That is the thing. Oh, I forgot some diagnosis. I always do that. You said bathroom, I pee every 20 minutes. I have to pee right now but I’m trying not to. I have what’s called interstitial cystitis.

Cassie: I’ve heard of that.

Ashley: Fuck that. Basically, it means I have little holes in the lining of my bladder and it just means that first off, my bladder cannot fully empty itself. It takes 3 times going to the bathroom within a 10-minute period to fully empty my bladder. I can’t do it all at once. Sometimes I’ll lean forward to get the rest out. And, it’s painful. So, if I have to go to the bathroom, which I have to go five times an hour, it hurts.

For the first couple of years of this, it burned to the point where I thought that I had–They can’t diagnose me with bacterial vaginitis and all these infections. And, I remember going to a doctor and I was like, “Hey, I just need another yeast infection pill because this pain is not going away.” And the doctor was like, “Well, are you sexually active?” This was five years ago. I said no. And, she said, “Well, are you sure?” And, I was 23 and I said, “Yeah, I’m sure, I’m not sexually active.” And, she goes, “Okay. Well, we’ll just test you for this infection,” whatever. So, I pee in a cup.

And then, four weeks later I get a $300 bill for all these STD tests that were negative and a pregnancy test that was negative. And, I called her and I’m like, “Did you test me for all these STDs?” She goes, “Well, aren’t you glad they’re negative?” And, I was like, “No, I knew they were negative. I told you not to test for them.” And, she was like, “Well, all these teenagers come in saying they hadn’t had sex but then they have these diseases and they’re pregnant.” And I was like, “I’m 23 and I don’t have time for this. You’re going to pay this bill.” And, she did.

Cassie: Oh, good.

Ashley: Yeah. So, I went to a new gynecologist and she basically diagnosed me with pelvic floor disorders, vaginismus, and interstitial cystitis, which it’s really interesting to me how I see has been linked to a bunch of autoimmune diseases. And, it’s also super interesting that with PANDAS, kids that have PANDAS start to lose control of their bladder. And, they just represent with all of these frequent urination and bladder disorders. And, I’m like, “This is so interesting.” Because in college, it really got bad to the point where I started peeing every 15 minutes, and my poor fiancé, he sits there in bed trying to sleep and I’m up every five minutes. It takes me about at least four times of urinating before I can get to sleep. If I go 30 minutes without using the bathroom, I have to use it before I can try to fall asleep. Yeah. Basically, I had to go to a physical therapist for my vagina.

Cassie: I’m literally doing that right now.

Ashley: I hate it. It’s so awkward.

Cassie: I’ve had so many fingers up my butt and all sorts of stuff. But now, I’m just like, “Here’s my vagey, deal with it.”

Ashley: Yeah. I finally got to that point and I was like, “What the hell is this?” And, if I ever have a kid, I’m ready. Yeah. And, it’s something that people don’t talk about is your sex life when you have something like that. I would tell my friends because I was a virgin until about the age of 25 because I couldn’t. And, they would look at me, they’d be like, “Oh, are you saving yourself for marriage?” I’m like, “No, bitch, I can’t have sex.” And, they were like, “What do you mean?” And, I would have to explain it to them. I’m like, “It doesn’t work.”

Cassie: Yeah.

Ashley: It shuts itself off. And, it’s awkward to talk about, but it’s it shuts off. It’s like a light switch. It’s done. It’s so painful that it just shuts off. It’s traumatized. I mean, she’s traumatized. And, they would laugh. And, I’m like, “It’s not funny. I’m crying.”

Cassie: Yeah, you’re my little kitty cat.

Ashley: She doesn’t work. And, thankfully, I went to physical therapy and it’s better now. But, it’s awkward to talk about. And, all these things that people don’t realize it when you have a chronic illness or you’re autoimmune, it’s not just kind of a one and done, your whole body. Everything has something. It’s like your big toe has something wrong with it. Everything has something and you’re like, “Well, that’s cool.”

Cassie: But it feels better now and you’re able to enjoy.

Ashley: Enjoy, not so much. I think it comes with time. And, it’s anything which gives me a lot of insecurities because–

Cassie: Yeah.

Ashley: And, I won’t go into that too much because my partner is really private, and I don’t want to embarrass anybody. But, you feel insecure within yourself when your body doesn’t do what it’s supposed to do. And, I’m going to the bathroom every five minutes and everything is broken with my vagina. And, I’m allergic to myself literally, metaphorically, and medically like, “What kind of a wife did you sign up for?”

Cassie: And, we only got to really touch on this at the end of our sex and intimacy episode, but where intimacy is so much more than sex or penetrative sex or oral sex or whatever it is. And, I mean that is truly, I don’t know, the bond. I mean, that’s the bond that I want to share with somebody. And, I totally do understand. I remember when I was having so many problems with my bumhole and my ex was like, “When are you going to start wearing thongs again?” Thong is for sexy. And, I’m like, “Well now I’m super insecure about all of my underwear. Thank you so much. Now, I never feel like I’m sexy.” It is really hard. And, if you haven’t read “The Lady’s Handbook to her Mysterious Owner”–

Chelsea: I wonder if that’s where you’re going with this.

Cassie: It’s amazing. We interviewed Sarah Ramey on our podcast. It was a long time ago now. But, she talks in her book about how she also could not have sex. She had all these problems down there. And then, she had a time where it was better, and she was like “I’m having sex.” And, that was her number one priority. And then, obviously, then she’s had a really tough time with it again. And, her diagnosis with what she’s had going on is crazy. And, I mean, she’s amazing. It’s an amazing book.

Yeah. Thank you for sharing that part too. And, I’m glad that you didn’t forget to add that in because that’s fucking huge. I mean, that is part of your everyday life. Like you said, you got to go to the bathroom all the time.

Ashley: I have these lists of problems and it’s like some of the smaller ones get pushed down to the bottom, then my friends are like, “How is that small?” And, I’m like, “I forget that there are people that don’t do this everyday.”

Chelsea: It becomes so normal for you. It’s your normal day-to-day life.

Ashley: I’m like, “Oh, it’s just my bladder. It’s fine.”

Cassie: Yeah.

Ashley: It becomes so normal.

Cassie: It becomes so normal. I mean, that’s totally it. Chelsea and I were just talking about this the other day on a call. It was like I sometimes forget to maybe put stuff online or post about something to realize, “Oh, wait, someone else is also like–” Other people feel this, they go through this. So, when it’s like “I’ve been to the bathroom for eight times this morning,” and–

Ashley: I just do it at this point. And, you know what really ticks me off is places that are like “In order to use our bathroom, you have to buy something.” And, I actually realized the other day that I could go to my doctor and get a disability card that says, “You have to let me use your bathroom.” And, I could literally count on no hands the amount of friends that could go to their doctor and get that card. Maybe this is a legitimate problem.

Cassie: One hundred percent. Yeah, they have a Crohn’s card like that too. And, I’m like “I really should get it” because there has been several times in stores that I’m like, “Oh, my god, I’m going to have an accident or something.”

Ashley: Yeah. It gets so painful bladder-wise that I’ll be in my car. I’ve had moments. And, I guess I don’t think about this a lot because I don’t like to think about it because it’s embarrassing, but I’ll be sitting there just screaming at my steering wheel. I have to pee to distract myself just screaming because I’m trying to get to the nearest store. And, I think I’m going to pee all over my seat. And, I don’t want to have to clean that up in my car and I don’t know what to do. And, it’s embarrassing.

There are days where I’m like, “Why does it feel like I have a bladder and a public area of with a woman who’s given birth five times?” What is that? And, I’m like, “This all has to be connected.” That’s when I started to call–

Cassie: Oh sorry, I think I freaking froze there, but I was going to say yeah. Forget jumping jacks or trampolines–

Ashley: Like it hurts. And, I don’t know…

Cassie: So, for your job, do you like–Oh, my god, I’m breaking up, I’m so sorry. I’m delayed now.

Ashley: I think you’re good now.

Cassie: Okay. I was just going to ask for your job, do you work in-person and are they chill about it?

Ashley: So, I’ve been at my job for a year. It’s my dream job. I applied to this company for 10 years. I think I interviewed for my job for six months. They hired somebody else first and then I kept interviewing and then they hired me. Yeah, we have an office. I work in the media WSB office. And then, basically, when COVID started, we started working from home in March and we haven’t gone back. So, it’s been a transition for me. But, when I was in the office, I actually talked with people about it regularly and they’re like, “You should talk about this on-air” or like, “So many people would listen to this.” And, I’m like, “So, people actually want to hear stories here.” That’s interesting. Because I used to work in a bunch of offices that were like, “Maybe don’t say that too loud because people are going to judge you.” And, I’m like, “Oh, okay. Well, I’ll just do my work then.” And now, it’s like working in an entertainment kind of field and a vibe where interesting stories are respected. And, it’s just like–

Cassie: That’s amazing.

Ashley: Yeah. You go talk about that because so and so would listen to it. It’s very interesting to be in a storytelling-type of career because people want to know who you are rather than like “Oh, let’s keep that hush, hush,” like “Don’t bring that to work.”

Cassie: I like that, a storytelling career.

Ashley: Yeah, that’s what I like to think of myself across. Yeah. I think that all creatives are just storytellers. No matter if it’s radio, TV, news, if we’re talking about podcast, Instagram, social media, anything. If you’re a writer, if you’re an actor, you’re a storyteller. And, that’s what we have in common.

Chelsea: Yes.

Cassie: I love it. Oh my goodness.

Chelsea: Ashley, I feel we could talk to you all day long.

Cassie: I know. I wish we could hang out.

Chelsea: This is so much fun.

Ashley: Where are you guys based?

Cassie: We’re in Kansas.

Ashley: Okay, cool, cool.

Cassie: So, we’re not too far from fricking Atlanta.

Ashley: Oh, yeah.

Cassie: Not too far.

Ashley: Same place, it’s fine. We have tornadoes.

Cassie: Yeah, we’re basically neighbors.

Chelsea: There is a direct flight from Wichita to Atlanta, which does not happen very often. We don’t have a lot of direct flights.

Ashley: Yeah, it’s nice.

Chelsea: But, I know you said that you have to pee, and I want to respect that. So, thank you. Seriously, thank you so much for talking to us. This conversation has been amazing. We’re probably going to have to chat again because I feel like as we were talking, there was so many different layers. And so, I would love to continue this conversation at another time.

Ashley: I’m so dying for that.

Chelsea: Diving deeper. I mean, you’re really vulnerable with sharing what you’re going through. And, I think it is so fascinating about how your whole PANDAS basically diagnosis connects to so many of the other things that you experience in your life. That is very, very interesting.

Cassie: It’s a weird umbrella that you almost have to pick one topic at a time to actually reach that audience or to go into it. It’s a lot.

Chelsea: Thank you so much for sharing. Thank you so much for taking time to talk to us. This has been so much fun.

Ashley: Casper, the Friendly Whore proves.

Cassie: Yes.

Chelsea: Yay. Awesome. Well, Ashley, thank you so much.

Cassie: Wait, where can people find Ashley?

Chelsea: Oh, yes. Where can people find you on the interwebs because…

Ashley: Oh, people can find me watching YouTube at 2:00 am, just kidding. So, my Instagram is lapin_studios. That’s not how you say it in French, but it’s how we say in America, I guess, L-A-P-I-N underscore studios. And then, that’s where I am everywhere else.

Cassie: Perfect.

Ashley: There you go.

Chelsea: Yes. And, Ashley shares a lot of stuff that we have and then we reshare her onto our stories. So, if you just–

Ashley: I do not have an only fans, I’m sorry.

Chelsea: But, go follow her, go see her amazing energy in person through the Internet.

Cassie: Yeah, your Instagram is so gorgeous and glittery and sparkly which I love.

Ashley: Thank you. I also show my buck teeth a lot because I’m very ashamed of them and I’m trying not to be. So, if you want to go like my teeth pictures and not leave fake comments about my teeth, thank you.

Chelsea: I have buck teeth too.

Cassie: Oh, my god, neither of you do. Your teeth are so cute.

Ashley: My heart just skipped a beat because my shower leaks and I thought it was my dog pissing on my stuff.

Chelsea: I’m so glad that’s not–

Ashley: Thinking of having to pee. Okay, so before we shut off, can I do a cute little boomerang so I can post about it?

Chelsea: Yes, please do.

Cassie: Okay, let me get it pulled up here. It usually takes me two tries because I cut somebody off.

Chelsea: Mostly your own head.

Cassie: Yeah, mostly myself. I just need to get it done. Okay.

Ashley: And, please tag me in everything because I’m the biggest whore online. I will repost it all.

Cassie: Oh my god, dude, we love so much that you do. Okay, everybody is in. Okay, you guys are dancing already.

I need to redo it because I was moving my arm. I got to keep this freaking arm still. I know. I always have to do it two times. Okay. Oh, wait, wait. Keep going, just keep going.

Chelsea: Are we done yet, Cass? Are we good?

Cassie: Oh, my god, it’s perfect. Yes!

Ashley: I like that this is the end result.

Cassie: I was moving my hand because I was too excited. So, it was just looking this. But now, I got it and it’s perfect.

Ashley: Please do this again. I very much enjoyed it.

Chelsea: Yeah, this is really fun.

Cassie: My god, we’re so glad that you did because yeah, this would be wonderful to get you on again here soon. And, yeah, we will tag you and stuff. It’s so great to connect. I’m so glad that we met each other. This is so much nice.

Ashley: Alright. Well, you all have a good Saturday.

Chelsea: Thanks. You, too.

Ashley: We’ll talk soon.

Cassie: Bye.

Ashley: Bye.

Chelsea: Bye.

Cassie: We hope you enjoyed today’s episode. Please write us a review to help us reach more people like you.

Chelsea: If you’d like to connect with Cassie and I, you can find us on Instagram, @therealspooniesunite. You can also join our private Facebook community, Spoonies Unite, or you can visit our website, therealspooniesunite.com for all sorts of resources and to stay up to date with our current projects. And, don’t worry, you can find all these links in the show notes below.

Cassie: Thank you to our wonderful spoonie patrons for all your support and you can become one too. That’s right. All you have to do is go on over to patreon.com/therealspooniesunite and you can get all sorts of extra goodies like videos of our episodes and more.

Chelsea: Any support is greatly appreciated. It helps enable us to create more content for all of you as well as make this podcast sound better and better.

Thanks for listening. We can’t wait to be back in your ears soon.

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