At My Kitchen Table
Welcome to At My Kitchen Table, a conversational, interview-y podcast where I have a good yap with a guest!
When I was growing up, the kitchen table was the conversation center in a lot of homes. At my grandparents' house, friends and family alike were welcomed with connection as much as with drinks and food. In my parents' house, that tradition continued as my siblings and I would post up and chat with my mom as she cooked or baked or tried to read a book (with much exasperation as we refused to shut up). I found cozy similarity at my friends' homes with their parents, too.
Keeping with tradition, I create a space for everyone who visits my table, where we get to share a little bit of our journeys together - roses, thorns, and stems.
Interested in recording your story with me? Email me at atmykitchentablepod@gmail.com!
At My Kitchen Table
Guest: Jaclyn Haines
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It’s Wednesday, Teabags, and it’s time to welcome Jaclyn Haines to my kitchen table. I have the pleasure of knowing Jaclyn because she’s married one of my bonus kids – her husband is one of my son’s closest friends. She gets into some personal medical history as she speaks candidly about her lupus diagnosis and what likely triggered it.
She also talks about the strength of her competitive dance friend group, the harrowing end to her pregnancy, the stress of her son’s first few months, and how she leaned on her husband and family to get back on her feet.
Get cozy!
Intro riff by Dale Lytle (concert husband).
All content edited (I use that term very loosely) by Karen Shaak.
I hate tea bags. I have my kitchen table that doesn't have a specific small business about like this week. Let this be a general reminder to support your local small businesses whenever you can. This is a great way to get art and food and books and candles and oil and clothing and plants and so much more that is handmade. No two items or badges or designs are the same because they're not mass produced. Someone put their time and care into something amazing that awaits you in a small shop near you. Go explore and find her amazing. It's Wednesday tea bags, and it's a time to welcome Jacqueline Haynes to my kitchen table. I have the pleasure of knowing Jacqueline because she's married to one of my bonus kids. Her husband is one of my son's oldest and closest friends. She gets into some personal medical history as she speaks candidly about her lupus diagnosis and what likely triggered it. She also talks about the strength of her competitive dance friend group, the harrowing end to her pregnancy, the stress of her son's first few months, and how she leaned on her husband and family to get back on her feet. Get cozy.
SPEAKER_02What have you guys been doing this summer? We just had a second birthday party for one of my best friend's kids. Lots of birthday parties. And we have a couple weddings coming up. We have one next weekend, and then we have a break, and then another one that Evan is in.
SPEAKER_01Okay.
SPEAKER_02So we're busy from this weekend on until like end of September.
SPEAKER_00You know what? I'm like, I feel that very, very deeply because it's the same for us at this point. I mean, we were trying to plan, I don't even remember what it was. It was just something with a couple of friends, and I was looking at the calendar, and literally weren't we can't until October. I know it's insane. It really is. And like the we're not that busy normally because I know it's super weird.
SPEAKER_02We don't have events, but like just little things here on out to the other.
SPEAKER_00So I know that's crazy.
SPEAKER_02Well, my brother is coming to visit too, so he'll be in the end of July with his husband. So we'll get to see them for that's so fun.
SPEAKER_00Yeah, it'll be nice. Nice, awesome. Well, I appreciate you joining me today. And I know, like, it's funny, I was thinking a little bit about the topic um earlier today, and I was like, you know, it's odd because I don't have the same experiences that you've had at all, but it comes back to me to this central theme of like your body betraying you because I feel like I'm going through that right now with like perimenopause and menopause, where it's like every at every turn, it's like my body's betraying me. So yeah, I was just kind of thinking that. Yep. But yeah, so we're gonna dive into a whole bunch of fun medical stuff today. But before we dive into that, it would be really awesome if you could introduce yourself.
SPEAKER_02Yeah, so I'm Jacqueline. I am 31. I was born and raised in South Park, and now me and my husband Evan live in South Park, so that's where we'll be raising our little one. I'm an occupational therapist by day, and then I come home and I'm a mom to Hayden and our dog Gunther.
SPEAKER_00Gunther.
SPEAKER_02Yeah, little G.
SPEAKER_00That's fantastic. So you were born and raised in South Park. So for those listeners who are not Pittsburgh familiar, South Park is a little bit south and west of the city of Pittsburgh. So you're you're a lifer here in in Western PA.
SPEAKER_02Yep, like 25, 30 minutes out of the city.
SPEAKER_00Yeah. Awesome. And you're not like an only, right? Like you have siblings.
SPEAKER_02No, yeah. I have an older brother who's nine years apart from me, and then I have an older sister who's also five years apart from me.
SPEAKER_00So that's so funny. I don't think I realized that you were a b the baby of the family.
SPEAKER_02I am the baby, yeah.
SPEAKER_00You don't really give baby vibes.
SPEAKER_02I appreciate that.
SPEAKER_00Yeah, I'm sure they would say something differently.
SPEAKER_02No, they would say the complete opposite. I was very much hated until I was an adult by this.
SPEAKER_00Yeah. Were you like accused of being mom and dad's favorite? Yeah. All the time. All the time. I know. But as an oldest, I'm just gonna say it's probably true because we tell our brother the same thing. You know what's funny though? That's not it's not real. We mock my brother, he's the baby of the family, and we're like, oh yeah, you're a mom's favorite, but it's not. I know my sister will listen to this. It was her, and we all know it.
SPEAKER_02I just got, I feel like my parents were older by the time I was born, so that they were just more experienced and had had more. Yeah, that's so great.
SPEAKER_00What kind of a kid were you?
SPEAKER_02So I grew up dancing from the age I was like three, so I was very much into competitive dance, so it was like eat, breathe, sleep, dance. Then a little mix of anxiety came in by the time I was eight. So I was a very anxious child.
SPEAKER_00Yeah. How did that manifest for you? Like what kinds of how do you, I mean, how at eight years old do you come to realize that this is this is actually like not just some fears here and there, but that you have this thing?
SPEAKER_02I mean, it was like debilitating, like to the point where I could not spend a full day in school without having to go down to the school nurse. And I would have to call my parents probably five times within a school day.
SPEAKER_01Wow.
SPEAKER_02So I and I knew that was not normal.
unknownRight.
SPEAKER_02So you actually felt that? Yeah, none of my other friends were doing that. Yeah. So it was like something's not right.
SPEAKER_00Yeah. And did you get like an official sort of diagnosis at that young of an age, or did it take a bit of time?
SPEAKER_02I know I had to see like the school counselor at that age, but I don't think I was officially diagnosed until high school. Okay. Because that's when I had to go like start medication at that point. But I think my parents knew at in fourth grade that I was having something happen.
SPEAKER_00Yeah, yeah. Can you share a little bit about what you believe triggered it?
SPEAKER_02So I was actually just talking to this with my mom about it, and I think it was I was watching TV and I was like the only one in the room, and I had fallen asleep, and I woke up to seventh heaven, seventh heaven. It was on the TV and there was a scene of a car crash, and that is what I think triggered it because that is what I was scared of happening to my parents, even though the school I was at was two minutes away from my home and my mom worked at the school.
SPEAKER_01Yeah.
SPEAKER_02But I that I think that is what started it all.
SPEAKER_00Yeah. Yeah, it's insane sometimes how like something that seems in adulthood, like it's it's not that big of a deal. But when you're a little kid and you're like catastrophizing what you're seeing and you don't know how to handle it, you're just internalizing it. It's terrible.
SPEAKER_02Yeah. And then it just kind of unraveled into everyday life.
SPEAKER_00Wow. Yes. So did the anxiety have an impact on you, like on how you made friends, and did it impact dance? Did you continue to dance after this?
SPEAKER_02I yeah. So friend-wise, I feel like I was fine because I was in a Catholic school at that point, and I had like eight kids in my grade. So I had to be friends with everybody there. But dance, there was a point where I was like crying before going into dance all the time, and my mom was like ready to pull me from it.
SPEAKER_03Yeah.
SPEAKER_02But luckily, I just kept going and I did it all through college.
SPEAKER_03So yeah.
SPEAKER_02Okay. But that is where I met to this day some of my best friends.
SPEAKER_00So thankfully, I don't know how I did it, but I stuck through with it. But you hung in there. Yeah. Did did your anxiety impact family dynamics at all?
SPEAKER_02I feel like it brought me closer to my sister and brother because they could see me going through it because they also went through not the same exact thing, but they both also have anxiety in OCD. So they were like, they saw the signs, they knew what I was going through, so they would try to help me.
SPEAKER_00That's kind of awesome.
SPEAKER_02Yeah. Yeah. It was nice to know that I was not the only one going through it.
SPEAKER_00Yeah. It's really interesting. I I don't have the same anxiety path, but I had anxiety issues, and mine was triggered by religion and manifested totally differently. And I felt like I carried it kind of alone for a really long time because it made me feel so different and out of control. And so as I'm listening to you and I'm thinking, oh my God, what would life have been like?
SPEAKER_02If you had someone that knew, yeah.
SPEAKER_00Yeah, that understood it to be what it was. And yeah, that's really awesome.
SPEAKER_02Yeah.
SPEAKER_00Not awesome that they also had anxiety and OCT. Bio stretch. No, yeah. So you finally you said you sought medication like in in high school. Is that around the same time as the diagnosis?
SPEAKER_02Yeah. I feel like honestly, fourth grade was a blur. I feel like all of my childhood is kind of a blur because I was always going in and out of anxiety, which really sucks.
SPEAKER_01Yeah.
SPEAKER_02Because I know I had a good childhood, but I know for a fact I started medication in high school.
SPEAKER_00Okay. And were you j were was it panic attacks? Was mostly it, or was it just like the constant with your mind going? Did it impact sleep? Things like that.
SPEAKER_02Definitely had some times where my OCD was keeping me up and like making me do certain things before bed. So yeah, it was impacting sleep. And then sometimes I wouldn't be able to stop controlling what I was worrying about. So that would also keep me up.
SPEAKER_00Yeah. Did therapy like help at all? Did you do therapy?
SPEAKER_02In fourth grade, I had done something in school, but then I don't think I really started doing therapy until I was in my 20s.
SPEAKER_01Okay.
SPEAKER_02So I feel like dance was my main outlet. That was kind of anxiety-provoking at the same time.
SPEAKER_00How does that work?
SPEAKER_02Honestly, it was just my friends, and I knew a few instructors that understood what I was going through. So I kind of leaned on them throughout everything.
SPEAKER_00Yeah. When you did finally attempt some therapy, how did that work out? Because I've had I've definitely talked to people who have had very mixed results with therapy. And some people swear up and down by it, and other people are like, I just haven't found that thing that has worked yet.
SPEAKER_02Yeah, I feel like I've gone to it and then I stop and then I go back to it and then I stop. Some people I really connect with, some people I don't. So I feel like I did finally find one post, or I think it was postpartum, yeah, that I really connected with. So I just have her name written down in case I need to go back because she is one that I clicked with and I felt like actually helped me. Yeah.
SPEAKER_00So when the times that you would stop, was it that you weren't clicking with therapists, or were they like, okay, so we've given you these tools, go off into the world and do your thing with it?
SPEAKER_02I was, yeah, I would say a mix. The one before that I really clicked with, I would say he was just like, Well, we've done everything we can, nothing else is really helping you. So just basically try and handle it. Wow. Okay. And then other ones, it was like, I just didn't feel like I was getting anything from it. So it was kind of like a self-discharge. Yeah. And then trying to manage it myself with medication management and then just leaning on my family.
SPEAKER_00Gotcha. So kind of the reason why I wanted to talk about your anxiety a little bit chronologically is that it does apply directly to uh your lupus diagnosis. So and that was that came after you had had your son, but you'd kind of managed to put band-aids on it for a while before COVID hit. And I know you've kind of referenced that was as like the point at which it became a little bit out of control and unmanageable for you. Can you talk about what some of the triggers were for the return of the anxiety? Because you you said like you went to college A-OK, like you managed, and like college was great, and you have these strong friend groups, and but then COVID was kind of like this line of demarcation a little bit for you.
SPEAKER_02Yeah, I mean, I feel like I'm always gonna have a baseline of anxiety, but college was just a blast. I was able to manage it, and then COVID hit, and my parents are both, they both have autoimmune disorders. So I didn't really understand the extent of it until we were in the middle of it, just like everybody else. But I was scared that I was not going to be able to see them again if I was not being careful enough. So that is what triggered it all, the unknown of everything, and just making sure that they were okay is what really triggered everything.
SPEAKER_00And so were your panic attacks increasing?
SPEAKER_02Oh, yeah. It was like I could barely function without crying or like making myself sick over thinking of the worst or the unworthy.
SPEAKER_00That's a really, really tough way to have to try to exist when you're trying to power through all of that and still, I'm assuming you were still working, like it didn't impact you not working, right?
SPEAKER_02We had so I was working at a special education school at that point, and I know we had to do like virtual sessions, but then we shut down for a little bit, and then I was off for the summer. So it was kind of just like me and my thoughts alone.
SPEAKER_00Oh man.
SPEAKER_02So which is kind of worse.
SPEAKER_00Yeah, it can be in a lot of ways, right? Yeah. How long post-COVID was it when you got pregnant? Well, and actually, when did you get married? Because you got married like sort of post-COVID.
SPEAKER_02Yeah, 2022, September.
SPEAKER_01Okay.
SPEAKER_02And then my son was born May 14th, 2024.
SPEAKER_00Okay. And were you feeling at that point around the time of like getting married and having Hayden, were you feeling safer? Were you in a better spot at that point?
SPEAKER_02Yeah, I would say I was definitely in a better place than 2020. But still, again, like that baseline of just kind of uneasiness. Yeah. But not like major panic attacks at that point.
SPEAKER_00Got it. All right. So talk a little bit about your pregnancy um with Hayden. What it was like basically pretty normal until like your last trimester. So what started happening at that time?
SPEAKER_02So actually, before in December, I had started noticing that my palms and my feet were really itchy. So I messaged my doctor and he was like, it's fine, just like put some lotion on, you're probably dry because it was winter. So I did that. But then it came back kind of more intense in April. And so I messaged him again, and that's when he sent me for lab work, and I tested positive for cholestasis, which basically is your liver produces too much bile and it doesn't get filtered out how it's supposed to.
SPEAKER_00So it can be dangerous to the baby. Okay. Now, before we get into that, is it is there anything that's dangerous to you as well? Or is the is the concern 100% on the baby at that point?
SPEAKER_02At that point, they were concerned about miscarriage or like preterm labor. So that's when they said I have to be induced by 37 weeks.
SPEAKER_00Okay. And you and you did do that at 37 weeks, right? Yep. Yeah. All right. So talk a little bit about the immediate aftermath of like what happened post-delivery.
SPEAKER_02So I was fine, but he Hayden came out not taking his first breath. So he wasn't crying. So they tried to do the skin-to-skin contact to see if that would help, but then they obviously had to take him away to make sure that they could get him to take his first breath. So I knew something wasn't right, but they were trying to be kind of nonchalant about it just so that I wouldn't freak out, but I was still freaking the.
SPEAKER_00I was gonna say, like, how can and you were allowed to cuss on this, by the way. So you guys would just say fuck.
SPEAKER_02Yeah, no. I feel like Evan didn't really know what was happening. We had like news, we had our own playlist playing, and I was like, you need to turn this off right now. Like I was sobbing, but then he was still in the room with us at that point, and we could hear that they got him to take his first breath, but he still had to go to the NICU at that point.
SPEAKER_00So and so what are they what are they telling you at that point? Like, obviously, in the moment, they're not telling you anything because they're just trying to get him to breathe. But what were they saying afterwards? What took so long?
SPEAKER_02I'm pretty sure I like blacked out during it. I don't really remember the thing because my mom was in the room with us too during delivery. They left once I was okay and they took Hayden to the NICU, but they basically said that nothing was wrong. He just came out a weak white male, is what they said.
SPEAKER_00Oh the ironies of these.
SPEAKER_02I know, I know. I think he just wasn't ready to come out because I was 37 weeks and I was forcing him out with the no, he was comfy.
SPEAKER_00Exactly, exactly. And okay, so how long was he in the NICU?
SPEAKER_02Two or three days.
SPEAKER_00Okay, so that was terrible.
SPEAKER_02No, it wasn't bad, but it's just not the same as having a newborn in your room because he couldn't be in our room, so I just had to be wheeled down all the time in a breastfeed. He wasn't there overnight, so by the time they were saying that he was good to go, I was like, I'm not ready. I can't be a mom.
SPEAKER_00Yeah. Well, and I mean, so many of us feel that way anyway. Like, that's a normal feeling in normal circumstances. How did you manage through some of that? Because I imagine that you still had to have been like, okay, but this thing did happen, and why did it happen? And now you're just saying I have to take him home.
SPEAKER_02And right, yeah. And I mean, being in the NICU, you just have all the monitors beeping all the time. So you're thinking something is wrong. So I think they could tell that I just was like not mentally ready.
SPEAKER_01Yeah.
SPEAKER_02So Evan and I begged to like stay a night with him in our room after he was discharged from the NICU. And luckily, they were awesome to let us stay there. So we felt way more comfortable after we had a night under our belt, after we could see like he is okay.
SPEAKER_01Yeah.
SPEAKER_02But that was nice to have them in case something did go wrong.
SPEAKER_00Absolutely. It's it is really actually very incredible that you were able to do that because I know a lot of times they're just trying to get you out the door. Right. But yeah, I think to have that and also have like nurse backup just in case. Yeah. That had to have put your mind at ease a lot. It did. Yeah. Okay. So then you you get to take him home. And I'm sure you were overcome with all of those emotions too of oh my god, they're just letting me out the door with this child.
SPEAKER_02Yeah. How am I gonna keep him alive?
SPEAKER_00Right. Basically. Oh my god, now you have this really hard job. What was happening with him though, after you got him home?
SPEAKER_02He was fine for I would say the first. Week. And then we were at his, we did like a newborn photo shoot, and that's where I started to notice he was like spitting up more than normal. So we had the PCP appointments. He was not gaining weight like they had wished. He had gained back the weight that he had lost at birth, which they were happy about. But then the weeks after he was not gaining as they wanted to. So he was just throwing up literally everything that we were feeding him. Yeah. So that's not fun to see. No. Like, what am I doing wrong? At that point, I was breastfeeding. So I was like, something's wrong with me. So we had to end up going, it was like twice a week weight checks. So the hormones in my anxiety at that point were shot.
SPEAKER_00Yeah, it's overdrive, right? I mean again when you're postpartum and you there like a some of what you're describing is super difficult without underlying anxiety, right? Yeah. So so yeah, you've got this compounding effect at this point going on.
SPEAKER_02Right.
SPEAKER_00Yeah.
SPEAKER_02And then just to keep going back to the doctor and for them to keep telling me, like, no, this isn't getting better. Was I was like in my bed sobbing every day, did not want to get up. That point, I thought I was gonna have to go get more help for myself.
SPEAKER_01Sure.
SPEAKER_02But luckily at that point, my parents were living with Evan and I because they were building a house on our street. So that was everything because they were able to help us manage and basically take care of him while I tried to bounce back.
SPEAKER_00Yeah. What were some of the things? So I want to actually talk about that from two lenses. What were some of the things that you were trying to do to ensure proper eating and nutrition for him? And then what were the things that you were doing for you?
SPEAKER_02So we had to, we went to an ET, he had a tongue tie, we got that released at like three weeks because we were thought that was having to do with his increased acid reflux. We got him into occupational therapy. As a mom who is an OT, I was like, I could not keep them separate, and my anxiety was too high at that point. I was like, I can't. This is somebody else's job that needs to take care of it. So luckily, my friend at our workplace took him and was doing amazing.
SPEAKER_01That's awesome.
SPEAKER_02Getting him to try and just since he was 37 weeks, his oral motor skills were a little bit weak. So she was trying to help there. And then for me, I could not be anywhere near his feeds because I knew that that was a trigger for me. Because if I saw him vomit everything up, I would just like spiral downhill. So I was pumping exclusively while he was getting a bottle of what I pumped the previous time.
SPEAKER_01Okay.
SPEAKER_02So that was kind of my way of still giving him what he needed, but also taking the time that I needed and not seeing all of the throw up that with the feeds. Yeah. Even though I knew it was still happening, I just could not physically see it.
SPEAKER_00Yeah. That makes actually a lot of sense. Were you also doing things to like were you concerned that it was like foods you were eating? And like, so what kinds of things were you doing to try to make sure he was getting nutrition?
SPEAKER_02Yep, totally forgot about that. I cut out dairy, gluten, soy, all of it. And I was basically too scared to add it back in, even though I don't really think it was helping at all. I was just like, I don't want to change anything and make anything worse. So yeah.
SPEAKER_00How were you even getting calories?
SPEAKER_02I wasn't. I was the skinniest I had ever been, to the point where my friends were like, Are you okay?
SPEAKER_00Yeah. And the answer was kind of no.
SPEAKER_02Kind of no, but yeah.
SPEAKER_00Yeah. I was gonna say, because I remember seeing you when he was a little guy, and I know like I felt so awful because we were making brunch here, and you guys were all coming over, and I was like, Oh my god, what do you mean she can't eat it? Like, I felt so awful because I was like, What can she?
SPEAKER_02Oh you're fine. I basically lettuce at that point.
SPEAKER_00Oh my god.
SPEAKER_02Okay, and so a lot of willpower, but at the same time, it didn't because I hated seeing him struggle so much. I was willing to do anything to make it better.
SPEAKER_00Yeah. And none of it was really helping at that point, right?
SPEAKER_02I don't think it really did. He was also on like a pepsid and another medication for acid reflux. I don't think it helped at all. It might have made him a little bit comfier, but uh, yeah.
SPEAKER_01Yeah.
SPEAKER_02Were you guys basically just feeding him like sitting straight up? Like he had to sit up a specific way on an incline. He could not move for at least 30 minutes after the feed.
SPEAKER_00How do you do that? With I mean, because their motor skills are starting to get a little bit better.
SPEAKER_02Yeah, no, he he was like a ticking time bomb. Yeah. Because if we moved him even an inch, it was just projectile. It wasn't even projectile, it was just all the liquid would just come up. That poor little guy. I know, and we had to get him tested for uh he had like an ultrasound for pyloric stenosis to make sure the valve was closing. That was fine, but yeah, he was just listed as failure to thrive for a little while.
SPEAKER_00Oh my gosh. And so while all of that's happening, what were you doing to try to manage your own self outside of just like obviously not seeing the feedings and not being triggered by that? But were you back in therapy at that point? Were you taking meds? How did that work?
SPEAKER_02I was I'm always on meds. Yeah. I think I started therapy again once he was probably three months old. So when I was like in the trenches, I was not in therapy. Okay, I was just leaning on Evan and my parents, yep, and trying to enjoy the newborn stage as much as I could.
SPEAKER_00Well, and I think there's a little bit of like your world gets super small and super focused, and there it's almost like there's no time or room for some of those things, too. It feels it can feel, I would imagine, almost extra.
SPEAKER_02Oh yeah.
SPEAKER_00Yeah.
SPEAKER_02Because everything revolved around him trying to gain weight.
SPEAKER_01Yeah.
SPEAKER_02And we had to wake him up every three hours, no matter what, to try and get more into him.
SPEAKER_00Yeah. So yes. So let's shift a little bit. Like, so you're in this space where you're a new mom, you're still like a newish partner, right? And so, what were some of the impacts to your relationships with like your family, your friends, Evan, when your world effectively gets that small?
SPEAKER_02I mean, my friends were great at checking in because I feel like I was just completely closed off and I just didn't have the energy really to reach out to anybody. So luckily they saw that I was struggling and would just jump in. And then Evan, God love him. I don't know how he dealt with any of it, being a new dad and then dealing with me on top of it. It was probably having like two newborns at the house. I was I was not well, yeah, he just kept rolling. Yeah, he's just so he's the opposite of me. Yeah, he is he's pretty chill, very patient, very patient, very chill, yeah.
SPEAKER_00He's a good noodle, yeah. Thank god, right? Yeah, yeah, and I know like you you've said that you leveraged him and you leveraged your parents a lot. Like, what do you feel like in talking with your mom since how did she handle? Like, I I sometimes think about that perspective too, just understanding that that's sort of my position now as well. Like, as a I'm not just a parent, like I'm a grandparent too. And you've got this double whammy, right? Because she's got to be worried about you and she's got to be worried about him. Like, were you guys able to share about any of those things?
SPEAKER_02She would come to every single appointment with me for Hayden to every OT appointment, to every PC appointment, and she could see that every PC appoint PCP appointment, I was just going downhill. And I think there was a point where she was like, Jacqueline, you just like you need to get your shit together because now you have another human you have to take care of. It's not just about you. So I feel like she just kind of kicked me into gear a little bit. A little tough love. Yeah, that's kind of like mom's job, right? Yeah, I mean, she was with me every single day since she was living with us. So she was taking care of him while also trying to make sure I was okay. But then there comes a point where I had to get back up.
SPEAKER_00Yeah, yeah. When when was that for you? And and did it coincide with like how long was he considered failure to thrive?
SPEAKER_02I want to say month one and month two, and then once we got around month three, he started to gain weight. But it wasn't until like he started to sit up by himself, like around six months, where I could feel myself relax a little bit because that's when his stomach muscles got strong, that's when the vomiting basically stopped.
SPEAKER_00Yeah, yeah. And I will say, just for the sake of the teabags, um, this story is actually not about Hayden. No, he's great. And if you could see pictures of him like on social media, you'd be like, that kid was never a failure. He never failed to thrive. Like he's he's doing great. He is, he's thriving now, he's totally thriving. But at what point did you start to experience your own weird, strange symptoms?
SPEAKER_02Ugh, let me think back. I think it was December of 2024. Yeah. So I started to get this weird like rash on my face where it was itchy and red, and it was on my forehead, and then it kind of went down onto my cheeks. So I went to my dermatologist because I just thought it was just a rash, like hormonal thing or something. Sure. Um, so she proc prescribed some stuff and it wasn't working. It actually made it worse. So I had to go back to her a couple times. She had to do a biopsy. The biopsy came back initially inconclusive, and then part of it came back positive for lupus, but then the other part of it was like, eh, I don't know.
SPEAKER_01Yeah.
SPEAKER_02So then I was kind of in limbo, but that is concerning. So I got a rheumatologist at that point.
SPEAKER_03Sure.
SPEAKER_02And they were kind of unsure. It was a very odd experience with my first rheumatologist, so then I had to find a new one. Long story short, my rash came back worse in September after I was in California because I was in the sun. And so I had to go back and get another biopsy on my chest, and that one came back positive. Double positive for lupus.
SPEAKER_00It's there are so many things that I want to unpack here because I've actually talked to a couple of different people with autoimmune illnesses for the pod. And I get it. It's like this really kind of strange thing, and diagnoses are so difficult because there's so much overlap between some of the different autoimmune diseases. And you actually were diagnosed relatively quickly, right? Like very fast. Yeah, which is fantastic because it's like, well, then you know, right? Right. But yeah, it's weird how you can have like markers in your blood work that show elevated levels of whatever, and then you come to find out, well, 10% of the population that doesn't have any other symptom of anything also shows that same level. It's it's such a weird, crazy like path.
SPEAKER_02It was not the path that I was expecting at all.
SPEAKER_00No. So it comes back quickly for lupus, but had you do you feel like you had had any other symptoms prior to that that you just weren't clocking as potential symptoms, like knowing what you know now about lupus?
SPEAKER_02I mean, I have always been extremely tired, but at that point I thought it was just new mom, like sure she's not sleeping.
SPEAKER_01Right.
SPEAKER_02But ever since college, I had mono in college, and I have never felt really the same since then. I've just always been dead tired.
SPEAKER_01Okay.
SPEAKER_02And then I also have always had really bad like neck pain. They still don't know if that is the lupus. I also have Lyme disease. Okay. So it could be a link of both of them.
SPEAKER_00Or like a petri dish of things.
SPEAKER_02Yeah, my I just overflowed and yeah.
SPEAKER_00What do the doctors think caused it? Like, because obviously this comes after you have Hayden, like a bit after you have Hayden that the diagnosis even happens. What do they think caused it or triggered it to come out?
SPEAKER_02So definitely the uncontrolled stress that I have been living with basically my whole life, but especially after Hayden was born and the hormones, and then possibly the Lyme disease, possibly the mono in the back in college, and then my parents both have autoimmune diseases. So genetically speaking. Yeah, I feel like I just had everything.
SPEAKER_00You were like the perfect form. I was, yeah, I was. When did you sidebar? When did you have the Lyme disease diagnosis?
SPEAKER_02That also came in when was that? I think March 2025.
SPEAKER_00Oh my gosh. Okay, so that was also very recent. Yeah, yeah. And how did like how did you even know? I'm assuming you had a tick bite. No. No.
SPEAKER_02So I had found ticks like in my hair, but I think it was for my dog, but it was never like a catch to me that I knew of. But since my ANA, which is a marker in the blood, was so super high, um, one of my doctors was like, let's get you tested for Lyme's disease, just since it is so prevalent where we live, and it came back positive.
SPEAKER_00So I and if you don't know this, that's a-okay, because I know we had not gotten into this level of detail before, but can you talk a little bit about the testing? I want to know about the testing for Lyme's disease, but also like even for lupus, like what some of those specific markers are. So A, I mean, I kind of know what that is, but if you know what that stands for, awesome. If not, yeah, I'll throw it in the notes.
SPEAKER_02I'm pretty sure it's anti-nuclear antibody and it looks for auto antibodies that are attacking your healthy stuff in your body. Okay. And mine was just like super, super, super high. Okay. And then what is the test for Lyme's disease? It was another blood test. Okay. It was just a specific one that got sent to a specific lab. I don't remember what it was called.
SPEAKER_00Okay. And do you know what they look for? No. Okay. All right. Fair enough. And then as far as the lupus diagnosis, I mean, obviously the rash was a big indicator, but then what are some of the levels that they need to see in your blood work in order for them to say, like, this is what it is with significance?
SPEAKER_02I think it was the skin biopsy that clearly marked it. And then I don't think anything else in my blood work really came back abnormal except the ANA. Um, but again, I have to be monitored like every six months with new blood work to make sure that it's not turning into attacking any other organ. Got it. Because right now it is strictly attacking my skin.
SPEAKER_00Okay. A couple of questions. One, so what it how are you managing that currently?
SPEAKER_02It sucks because I can't really go out in the sun. Like I can. I just have to lather up and sunscreen, but even that still doesn't work sometimes. I can come out with like red, splotchy, itchy, like severe itchiness. So definitely a lot of like clothing protection. Hats. Like I do not go out in the sun without a hat at all.
SPEAKER_01Yeah.
SPEAKER_02Other than that, I'm on medication every day for it.
SPEAKER_00And then so when like if you think back to when you were a kid or like early adulthood, were you the kind of kid who was like outside in the sun a lot?
SPEAKER_02Like all the time.
SPEAKER_00All the time.
SPEAKER_02I loved laying out, laying out on the beach. I was outside all the time. Yeah. But now it's like I hate the summer.
SPEAKER_01Yeah.
SPEAKER_02Which is it sucks. Like, I don't want to go to the beach anymore.
SPEAKER_01Yeah.
SPEAKER_02I don't I want to be outside, but I have basically have to be in the shade all the time. Yeah.
SPEAKER_00Oh my gosh, that's so insane. I know. So medication for now, and then okay, the monitoring you were saying every six months, and they need to make sure that it doesn't start attacking your organs.
SPEAKER_01Yeah.
SPEAKER_00If you can like talk a little bit about lupus itself as an autoimmune illness, like that, how does it differ from the others? Like, what are some of the things that are watchouts? And what is like the long-term not prognosis, because like tons of people live with lupus, right? Like, but like what are some of the long-term watchouts and things that you have to be mindful of?
SPEAKER_02I mean, lupus can go to really any organ, which I think is the scariest. And like I I don't know what to look out for besides getting my blood work every six months. So it's really more leaning on my doctors to make sure nothing looks different than the last time that I went.
SPEAKER_01Yeah.
SPEAKER_02Because it can, it can attack the heart, it can attack the kidneys, it can attack anything.
SPEAKER_00Yeah. How does that impact your anxiety?
SPEAKER_02Or does it actually I felt like no, it does, but now that I have a diagnosis, I feel more comfortable because I am being monitored. But also trying to not let myself think about the what-ifs every day.
SPEAKER_03Sure.
SPEAKER_02That's not gonna help me. The anxiety is probably what caused me to be here in the first place. So I'm trying to just live day to day. Yeah, but it probably isn't healthy either, but yeah.
SPEAKER_00No, I it it's interesting. It's kind of why I asked that question because there was a part of me that wonders a little bit about like almost sort of that reverse effect of like, okay, well, this got bad, right? Like you went through some really intense stress for a couple of different periods in a in a short amount of time, right? So this all happens within what, like a year, year and a half of Hayden being born, and you're like, all of it is happening, right? So you have to give birth early. Hayden has this failure to thrive, this bout of like not being able to keep down his food, right? The Lyme disease diagnosis, the lupus diagnosis. So you've had like this intense period of of medical like bullshit thrown at you. Yeah. And so it did make me wonder a little bit as a person who has had to manage her own anxieties. Is it almost like a well, oh well, what else can happen now?
SPEAKER_02Like yeah, I mean, I feel like it makes me realize that the anxiety was so unhealthy, and this is what I get for not getting it under control my whole life. Girl, that's not right.
SPEAKER_00Stop it.
SPEAKER_02I just it makes me think now, like, what is the point in being anxious every day? Like, it just made myself more sick. Yeah, yeah.
SPEAKER_00So is it changing how you're managing your anxiety? Has it made you look at altering doses of medication? Has it changed your outlook on therapy?
SPEAKER_02Yes, I am now followed by a psychiatrist for my medications. Okay. I meet with her every two-ish, three months just to make sure I'm doing okay because I do not want to go down the path of postpartum again. So I just like having her in case something goes wrong. Yep. And then therapy-wise, I still have the name of the one that I really connected with. In case we do get pregnant again, I feel like I am going to be more proactive and get on therapy before I have a baby so that I can get my tools back in check.
SPEAKER_00Yeah. And so let's talk about the tools a little bit too. What kinds of therapy have you mostly done in the past when you have like gone for periods of time? Are you doing like just cognitive behavioral therapy? Yeah. Yeah. Okay. Yeah.
SPEAKER_02More of the talk therapy and just trying to find ways to manage it. So more like mindfulness techniques.
SPEAKER_00Cool. Do you and are you good about like mindfulness? Is that a path that you're like comfy with? No, I could be better.
SPEAKER_02Yeah, it's just hard.
SPEAKER_00Well, you are at a point though where you have a little one and you're chasing him around a lot too. And it is tough to like carve out that time for sure.
SPEAKER_02Yeah, because by the time my head hits the pillow, I want to go to bed. Yeah, yeah.
SPEAKER_00Has your sleep improved at least with like being at least having a lot of your medical stuff accounted for with meds?
SPEAKER_02Yeah. Are you able to like I would say yeah? I would say I'm able to fall asleep faster.
SPEAKER_00Okay.
SPEAKER_02Than prior.
SPEAKER_00Okay. And are you able to stay asleep? If Hayden doesn't wake me up, yes. Yeah. And how's that going?
SPEAKER_02Because he's too he's too fresh too. Fresh too. It's not going well. No. He just knows that if he cries, we will come and get him and put him in our bed because we want to get sleep. So he has learned that we will cave and knows what to do.
SPEAKER_00Oh, that's so great. He's smart for two years.
SPEAKER_03Yeah, yeah.
SPEAKER_00And how long ago was it that your parents' house was done? So, like, when did you stop having them daily?
SPEAKER_02It's been over a year. Yeah. So they're still up the street. So we see them every day.
SPEAKER_00That's right. That's so funny. So I know you mentioned, you know, like if you were to have more children and like having the therapist on hand and whatnot, but looking to the future, does any of this shift how you look at the potential for having more children?
SPEAKER_02Yeah, we Evan and I have definitely talked about the pros and cons. Luckily, with the medication I'm on, we are still able to conceive if we want to, like healthy. But my concern is more of postpartum and just making sure that the baby is healthy. I haven't researched too much about pregnancy and lupus regarding the baby. I've just talked to my doctors more because I know if I go down that rabbit hole, it will not be good for me.
SPEAKER_01That's fair.
SPEAKER_02I know, like I they say that the lupus flares really calm down during pregnancy. It's more postpartum that I would have more issues.
SPEAKER_01Okay.
SPEAKER_02So people say that people with lupus feel great during pregnancy. It's more of like I think like six weeks postpartum that flares might come back.
SPEAKER_00Gotcha. And then what about the cholestasis? Is that something that you have to have concern about happening?
SPEAKER_02Yeah. Since I've had it once, they said I'm definitely more likely to get it than somebody who has never had it.
SPEAKER_01Wow. Okay.
SPEAKER_02So that also played in our minds. Sure. I don't want to have to be induced, but if that's what's going to keep both of us safe, obviously I'm going to do that.
SPEAKER_01Sure.
SPEAKER_02But I do think that's where a lot of Hayden's issues came from.
SPEAKER_00Sure. Yeah. You just never know, like some of them are not done cooking in time at 37 weeks.
SPEAKER_02Right, right. They're not technically a preemie, but I still think he was a preemie.
SPEAKER_00Right. His little digestive tract would tell a different story.
SPEAKER_02Right. That was not developed. No. So I feel like I will be very hyper-vigilant on asking for testing. But I am kind of scared that my anxiety is going to play tricks on me and make me feel like I'm itchy, even though I might not be itchy.
SPEAKER_00Oh my god, I didn't even think about that part. So I mean, all right, I'm just gonna like throw this out there. Do you think that maybe like don't wait until you decide to have another baby? Like maybe just contact the therapist and start getting to work on those things. That's probably a good call, yeah. I don't know. Just maybe some things I would tell my own kids. Like, I don't know. It's not a bad call. It's just funny because, you know, I mean, obviously, we've chatted before about some of these things and and some is is not. Like I'm learning some stuff new. But towards towards like the end of your story about the lupus diagnosis, I started to think about it. I'm like, oh my god, am I triggering her by even asking these questions? No, no.
SPEAKER_02I don't want you to feel it's kind of no, I feel like it's kind of therapy to just like get it all out because I've just been like going day and day that I feel like I haven't really digested it all. Sure.
SPEAKER_00Yeah, I can I can imagine that that's probably pretty real. Like it is it's a lot to digest too. It's like you're not a machine, you're not gonna process everything as it, you know, they hand it to you. So yeah. And then, and kind of like before we we wrap, like, talk a little bit about lupus flares. Like, obviously, that is what happened, and that's how you got the diagnosis. Is that something that you can expect outside of pregnancy? Is that something that you can expect like a bunch, a little bit? Like the medication could keep it on an even keel. Like, how does that work?
SPEAKER_02Yeah, the medication is supposed to, as far as I know, lessen the amount of flares um and keep it under control more and slow it down or pause it from attacking different organs.
SPEAKER_01Gotcha.
SPEAKER_02Is the way that I understood it.
SPEAKER_01Okay.
SPEAKER_02And also to keep future baby if we have another baby safe.
SPEAKER_00Fair enough. And you'll so when you, if you okay, let's just say you guys decide, you know what, we're doing this, we want another one. Do you have to go off of your medication? No.
SPEAKER_02They said it is way safer to stay on it than to go off of it. Just like the antidepressants, like they want you to stay on those during pregnancy.
SPEAKER_00I love knowing that because I know back in the day, that was not the case. Yeah. They wanted you off of them. And it it does make me wonder. Like, I've had people in my life who have had postpartum depression with psychosis. Yep. I have people in my life who have autoimmune diseases, some of whom just cannot have kids because they can't come off their meds. Right. And their meds are not safe for you know gestation. And so just to hear that is like kind of refreshing. That that's not the way that we think about some of these things now. Right.
SPEAKER_02Because I don't think I think it would be way more unhealthy for me to come off my antidepressant and try to have a kid than to stay on it.
SPEAKER_00I can imagine, yeah, that makes a ton of sense to me for sure. Awesome. So before we get to the three good things about your week, how are you like today with the lupus? What like is everything being managed? You're feeling good. How are you with like the effects of Lyme disease? Is there anything that you're taking for that too?
SPEAKER_02I was on like a very strong and long course of antibiotics for that.
SPEAKER_01Okay.
SPEAKER_02Now I'm not really taking anything for it. I still don't know like if the fatigue, I feel like the fatigue did get better. Um, so I feel like that now is just probably mom fatigue. Yeah. Maybe part of the lupus, but I don't know.
SPEAKER_00Got it. What was the other question? Just like, are you feeling good?
SPEAKER_02Yeah, I mean, yeah, I feel like I feel fine. Besides, whenever I do get like the butterfly rash, I feel like that kind of unravels some more anxiety just because I'm like, why am I having this flare? Is it getting worse?
SPEAKER_01Yeah.
SPEAKER_02Is this where it's gonna turn into something more?
SPEAKER_00Yeah. So have you had additional? We didn't actually talk about that. I just was sort of under the impression that you started the medication, like, oh, flares basically went away, and you just protect yourself from the sun. Have you said you've had them?
SPEAKER_02I have. I didn't start the medication right away either because I was concerned because I'm basically gonna be on it for life now. Yeah, and I didn't want to have to do that. But whenever Evan and I started to talk about, oh, maybe we do want another kid, and that's when I talked to the pharmacist and my other doctors, they were like, it is more safe for the baby if you're on it. That's where I was like, I have to go on it. Yeah, but yeah, I feel like I feel fine. I am able to work out every day, which I feel like is a big win because I know a lot of people with lupus do not have the energy whatsoever, or their joints hurt way too much for them to do that. So I feel like it's pretty well managed.
SPEAKER_00That's awesome. So have you had joint pain though?
SPEAKER_02Just my neck only concern, which I've had that issue since like right after college.
SPEAKER_01Right.
SPEAKER_02So yeah, no other joint pain though.
SPEAKER_01Okay, okay.
SPEAKER_00So it really for you when it's a flare, it's like the rash that is more and the and fatigue. Does the fatigue increase then when you have a flare? Okay, okay. Yep, but we're feeling good.
SPEAKER_02We are feeling great.
SPEAKER_00That's awesome.
SPEAKER_02And Hayden's doing great. He is hopefully he's sleeping right now.
SPEAKER_00Yeah, yeah. Hopefully he sleeps through the night and doesn't have to come into your bed. I'll be there. Probably around 1:30. All right. Three good things about your week rolling seven days, and it can be anything big or small, whatever brought you joy, made you feel peaceful, whatever.
SPEAKER_02Yesterday, my best friend's son's second birthday party where Hayden just had a freaking blast with all the kids, and then I got to be around my best friends.
SPEAKER_01Yeah.
SPEAKER_02That's number one. Number two, I was able to work out this week. So I'm just thanking my body for letting me do that. Right. I never thought I would have to do. Right. And then three, Evan got home safely from Ohio. He was on a little trip in Ohio.
SPEAKER_00Nice. Yeah. Nice. Well, that's good. I hope he wasn't spending too much time outdoors in Ohio on his trip.
SPEAKER_02He was a little bit actually. I was yeah, not the smartest.
SPEAKER_00Well, I mean, what can you do? Yeah. So for the for the tea bags, like we're recording, and we've just been under like code whatever's for breathing outside because of the wildfires and that are nowhere near us, by the way. No, like in Minnesota and and Canada, but it was like a smoky haze for like two days outside. So I imagine Ohio was worse.
SPEAKER_02He said it cleared up faster for us, but it probably still smelled like burnt plastic.
SPEAKER_00Sure. Well, that is a good thing that he got home safely. That's wonderful. Uh awesome. Thank you so much for doing this. Thanks for chatting about this with me. I know it's like it's not always easy to kind of talk through, especially like new mom stuff. I feel like can be really fraught.
SPEAKER_02But yeah, I don't know.
SPEAKER_00It feels like you've got for as much as you have this underlying anxiety, you've got like a really good handle on things.
SPEAKER_02I appreciate that because sometimes it does not feel like that. I'm sure the timelines are very blurred, I feel like, too. So yeah, I get that. I get that. But yeah, thank you so much. Thanks for having me. Of course.