Mariah of Mamas Facing Forward on Parenting at Every Stage of Mother.

Ali Atwell: Hi guys, welcome back. Quick update on today's episode. I had some technical issues with my recording. I'm still dialing in how to do a podcast and how to be a podcaster and how to figure this whole thing out. So unfortunately, some of the content is a little bit wobbly. I did the best I could. Mariah's information and message is so beautiful that I just don't want to not share it with you. So if you could just work through that with me while I'm...

Ali: Welcome back to the auto-remu mom podcast. Today I have a very special guest with me ⁓ all the way Colorado. This is one of my favorite parts about a podcast is I am meeting people all over the world really. And Mariah is a very special guest. We have a very lot in common ⁓ and she is mom of three in the Colorado area ⁓ and ⁓ she's writer she also ⁓ is doing a in the space ⁓ of ⁓

Mariah Z. Leach: You

Ali: moms with autoimmune disease. So I'm very excited to hear your story, Mariah. Thank you so much for being here.

Ali Atwell: figuring out exactly how to do this and how to get better at it. I'm not tech savvy at all. I'm just a mom who wants to connect other moms. So I really hope you listen through and that you enjoy Mariah and you got to check out her website, Momma's Facing Forward and her Facebook and Instagram page because she's a gem and she's got a ton of information for expecting mothers out there that ⁓ is extremely valuable. It just didn't exist when...

Mariah Z. Leach: Thank you for having me.

Ali: ⁓ you're welcome. Like I said, we do have a lot in common. So let's start with your story. Let's start with your early symptoms to diagnosis and ⁓ what that looks like for you.

Mariah Z. Leach: Ahem. Okay, well, I was 25 years old and I was in the middle of a dual degree program at the University of Colorado. Excuse me, I was working on a law degree and a master's in environmental science. And I was busy, I was active, I was a snowboarder. I joined the university club water polo team in my spare time just for fun, because I enjoyed it. And then my symptoms came on kind of...

Ali Atwell: She and I were having our baby. So anyways, thanks so much for your support. I hope you enjoyed today's

Mariah Z. Leach: slowly one by one and they were kind of excusable at first. Like first it was my toes and I had like hurt one of my toes by dropping something on it. I was like, ⁓ well, something went weird with how it healed. And then it was my fingers and my wrists and it was the middle of law school finals. I was on my computer hours and hours and hours. That's all it was. You know, I thought it would get better at the end of the semester, but it didn't get better. And then my knees swirled up to the size of grapefruits and I could hardly walk and ⁓

Ali: Mm-hmm.

Mariah Z. Leach: You know, I was, you know, in a way very lucky that I got diagnosed very quickly with rheumatoid arthritis ⁓ after that. So it has been since, since this my journey since I was 25 years old.

Ali: Okay, do you mind me asking how old you are now?

Mariah Z. Leach: I'm 43.

Ali: Okay, similar, was diagnosed at 29, I'm 47 now, and I was an athlete, and you just excuse the pain when you're an athlete. There's no pain, no gain mentality. There's always a reason why everything hurts. We're stressed, we're going, we're working. So you had a quick diagnosis. There was no denying it was rheumatoid from the beginning.

Mariah Z. Leach: Relatively, of months, I went from excusing these weird symptoms to full-blown every joint, go see the rheumatologist. ⁓ In fact, when I first at health, ⁓ because I was a student I had student health insurance, and so I was at the student health, I remember that the doctor actually asked if she could ⁓ bring in ⁓ a training doctor to look to touch my finger. joints because I was so typically presenting, she wanted to see the doctor, the training doctor to see what it was like.

Ali: That's fascinating. ⁓ When I was first diagnosed, I was being seen at a hospital in Boston and it was an educational hospital tied to Harvard. And we had the same exact situation. ⁓ actually, I was asked to go to Harvard and be a guest at a lecture. So I sat in front of a rheumatology group of kids who were taking it ⁓ I was pregnant at the time. ⁓ I gave my story ⁓ all these ⁓ ⁓ something Harvard ⁓

Mariah Z. Leach: Mm-hmm.

Ali: because of this presentation was so obvious at first and now I was a pregnant woman and how to treat a pregnant woman and we'll get into all that I'm sure with you because you went through the same thing. So you're 25 now had you been dating at the time?

Mariah Z. Leach: so I was I was living with my boyfriend who then became my husband later, ⁓ but we living and he's he's been with me every step of the way but I did ⁓ after At first think I don't think I realized what the diagnosis meant, you know I think I thought they're gonna give me some medicine. I'm gonna take the medicine I'm gonna go back to class like it was not The impact didn't hit me until later and I did I went right back to law school in the fall and it was rough Like, and I had never struggled so hard to keep up in school before. Like that was my thing. ⁓ And so once I kind of figured out the impact and how it was going to be, I did offer my husband a chance to leave the relationship because I felt like I had to, because I felt, you know, like I have to live with this for the rest of my life, but you don't necessarily need to do that. And obviously he made the choice to stay and three kids later, here we are. But, but it is, it was a scary kind of moment of. Wow, this is not how we envisioned our lives going.

Ali: for sure and I don't think people talk about that enough and it sounds like you and I again have this in common that the men that we chose at that time because we were not married either. ⁓ We were engaged there's a lot of men out there don't understand this when their partners are ⁓ suffering through it and they don't have support that I think what you're saying you have and I have. ⁓ It's a huge blessing like ⁓ I know how people ⁓

Mariah Z. Leach: Thank

Ali: I think it's a gift ⁓ to find somebody who can ⁓ champion you through

Mariah Z. Leach: Sometimes I think that the husband or the partner deserves a little more credit than they get because it does impact their life as well. And I don't think people think about that. And so I think they deserve credit for that.

Ali: Sorry, go ahead. They really don't. And I say it all the time. I want to get my husband on the podcast to talk about his experience. We've done my kids and that was eye opening for me. And I think to have him come on and, you know, he, he's my ultimate champion and we'll do anything he can to help me out. Especially when it comes to this kind of stuff. But, you know, it's not easy. There's a layer of it to a marriage and to children that the normal person.

Mariah Z. Leach: That would be an interesting one. Yeah. It's not easy, for sure.

Ali: hate that term but doesn't see or hear or understand. ⁓ Well that's amazing, I'm glad he stuck around. ⁓ So tell us a little bit about ⁓ what you felt or what you thought about when you made the decision to have children.

Mariah Z. Leach: Me too. So I basically, you I made, was in that dual degree program and I finished it and I got to the end of school and we got married right about that time. And I sort of looked at things and I thought, well, there's the family path and the career path. And I didn't think I could handle it all at once given the way my health was. And so we chose to focus on starting a family. And you know, my oldest is turning 14 next week. And so, you know, 15 years ago, wasn't, any sort of resource for me when I started looking for information on rheumatoid arthritis in pregnancy or even just any sort of chronic illness and pregnancy. Like if you Googled that, sat down and Googled that, you would get statistics on what, you know, complication rates are higher and, you know, they kind of like encouraging you not to do it. And I just really. really wanted to connect with someone who was a parent and was living with a chronic illness. But at the time there wasn't even really social media the way there is today. So there wasn't a whole lot of information or ability to connect. And so I did feel pretty isolated then. I had friends who were having babies at the same time who were like going through new motherhood things, but there were some really unique challenges that I was facing and it felt like facing all on my own. ⁓

Ali: No.

Mariah Z. Leach: And so that's ultimately why I started blogging and writing and talking about this because I thought, well, maybe if I put my story out there, the next woman won't feel quite as isolated as I did.

Ali: ⁓ I felt the exact same like the exact same way. I actually tried to do a blog for a little while because I felt the same exact thing. there's so, I know there's gotta be people out there and you're right. The social media wasn't the same. It was kind of like in the forefront of Facebook and things like that. And, ⁓ you know, you just didn't connect, but I did attempt at a blog and I just found, I was trying to get the word out there and it was almost being in some of these,

Mariah Z. Leach: Mm hmm. Yep.

Ali: groups on Facebook or social media groups. can be a dark place because the people that are there are really for and their suffering and they're searching for ⁓ antics it can be very dark and isolating and I wasn't in a good place physically and I needed to take a step back from it. ⁓ So, ⁓ but you that's what happens. People, ⁓ they're they're in a bad place, they go on the internet, ⁓ they of spread it without knowing they're spreading it.

Mariah Z. Leach: It It can. Mm-hmm. Mm hmm.

Ali: And then you get better and you feel better and you don't go into those groups and you don't share as much because you're feeling better and you're outliving your life. And it's these types of things, what you're doing, what I'm doing is trying to connect us all back together and kind of keep it a little bit light. I'm trying to anyways, make it as positive as possible. It is a very dark and depressing disease, but especially rheumatoid. But yeah, there's a space for community for sure that's lacking, I think. ⁓

Mariah Z. Leach: Mm-hmm.

Ali: And so thank you for doing what you're doing.

Mariah Z. Leach: So I ⁓ started blogging and I connected with you that way. And then as social media started becoming more of a thing, I did start a Facebook group called Mama's Facing Forward to connect parents and parents... I originally started out supporting women, but now the group is open to anyone who's a parent living with a chronic illness. ⁓ And you're right. It is ⁓ something I work really hard at is keep that group. ⁓ from not being a depressing place. Like we've worked hard, we've come up with kind of slightly different rules than other groups. And we do focus, the whole point is facing forward, like figure out like, okay, here we are, how do we keep going? ⁓ And not focusing so much on the downsides. Or if we are asking for help about the downsides, we wanna know like, okay, how do I keep facing forward? Like, what can I do here? And sometimes, you know, you're facing forward for like a week at a time. a time you got to get through. But, but I think as long as I always feel as long as I'm pointing in the right direction, I'll get there eventually.

Ali: I couldn't agree more. know, ⁓ it's easy to look back and I used to be like that and I missed that, you know, ⁓ so I love the facing forward ⁓ mentality ⁓ because, it ⁓ is a struggle, but is positivity that can out of living a life like this. You're raising kids in a very different way. And I don't know about you, but mine are more empathetic, compassionate.

Mariah Z. Leach: Mm-hmm.

Ali: understanding of people there. They take time ⁓ to notice how other people are. And I just, think that's a beautiful thing. And if, you know, I have to have a little bit of suffering to make them better humans, I guess, that's okay for me. ⁓ But let's talk a little bit about your pregnancies. When you had your babies, did a lot of people go into remission, that type of stuff? Did you feel, ⁓ you feel pretty good?

Mariah Z. Leach: Definitely. You No. mean, I know there are people who go was certainly not one of them. My first pregnancy was back 15 years ago, there wasn't as much data as there is today medication use. So back then, the kind of best advice was basically stop all of your meds and hope you go into remission. Good luck to you. With my first, I did not really go into remission.

Ali: No. Yeah.

Mariah Z. Leach: But I managed, I did okay during that pregnancy. I did have a really, really strong postpartum flare. And so I, was a very disappointing thing for me, even though I was, I knew it was likely and I was prepared, but ⁓ you know, I clawed my way to breastfeeding for three months because I really wanted to. ⁓ again, at that time they were saying, there's no meds

Ali: I'm sorry.

Mariah Z. Leach: And then my second pregnancy, ⁓ I started out the same way on no medications. ⁓ And then my flared like worse than it had been in a very long time. ⁓ And I had make the decision to go back onto a biologic at the end of that pregnancy, even though the data was not that great to support such a decision at the time. So that was really scary. And so one of the things I always recommend to people is that even

Ali: ⁓ Yeah.

Mariah Z. Leach: Even if you're thinking that you want to try to go med free and see if you go into remission, because people do, I always recommend having a plan in place for what you would do if you don't go into remission, if you do flare. Because I to make that decision while I was ⁓ seven months pregnant and emotional, and ⁓ was awful. ⁓ And then for my third baby, ⁓ data had changed a lot by then. ⁓ I actually joined studies to contribute

Ali: Yeah. ⁓

Mariah Z. Leach: our data to showing which medic, you know, since I had taken a medication during my second and third pregnancy. My third, I switched to a pregnancy safe biologic prior to conception and then stayed on it the whole time. And that was by far my easiest pregnancy. And I was able to kind of breastfeed more

Ali: That's amazing. they just kept me on low dose prednisone the entire two pregnancies that I had. ⁓ didn't take... ⁓ exactly. ⁓ I was not happy about it, ⁓ never been in like a clinical remission ever. ⁓ pregnancy didn't...

Mariah Z. Leach: That was basically the only option at that stage.

Ali: put me into remission either, it was not terrible, I have to say. Like, I did feel... Who knows if it was the prednisone or what, but I didn't feel terrible. I just hated being pregnant. then, postpartum.

Mariah Z. Leach: Well that's the thing is that like everybody, you might go into remission but pregnancy has its own set of symptoms and weird things and pains and aches and stuff so it can be its own kind of difficulty all by itself.

Ali: Yeah, exactly. It's not on roses. Yeah, exactly. I So always find it interesting. Postpartum flares definitely a thing I hear about a lot. definitely suffered from them. ⁓ In fact, I think so far those are probably some of the most challenging years of raising a child. ⁓ Having a family was the postpartum flare and ⁓ just the constant A human life is dependent upon you whether you feel good or not and you have no, you have no, there's nothing you can do. And I did have support with my husband and my family, but you you want to do it the way you want to do it. You don't want someone else raising your baby either. So, ⁓ interesting to hear what you think about what some of the harder seasons of parenting have been for you.

Mariah Z. Leach: Rights, rights. Right. think agree that that postpartum flare period is really challenging. It's particularly with your first because like, you don't know anything about being a parent. You're learning how to be a parent at the moment. for example, like the breastfeeding decision felt so hard. Cause when you, when they're little, all you do is, you know, feed them and change them. And that's pretty much all of parenting. And so if you're not able to do that the way you feels really bad. ⁓ You baby, I...

Ali: Mm-hmm.

Mariah Z. Leach: when I had the postpartum flare and I did as much breastfeeding as I could. And then I was like, okay, well, I'm gonna switch him to formula and he's gonna be fine, his brother was fine. But the first time around, everything just feels so heightened and like any decision you make that's wrong is gonna scar them for the rest of their lives. But you know what, it doesn't and there's so much more to parenting than just how you feed them or what happens in those first couple of months. But I think before you know that, it's really hard to kind of...

Ali: Yeah.

Mariah Z. Leach: Give yourself grace.

Ali: A thousand percent. You're doing this for the first time and I struggled with the breastfeeding thing and it nearly killed me. I was like, I'm failing as a mother already. I've been a mother for a minute and I can't even do the one thing I'm supposed to be naturally, biologically able to do. I can't even do that. That is a real hard

Mariah Z. Leach: Yes, that's what it feels like. Right. Well, and think a lot of people don't understand that, ⁓ think a lot of people don't understand that breastfeeding, there's a learning curve. It's not like, whoop, and that word, not like you just know how to do There's a learning curve. And if you're not prepared for that, then it's even more scary.

Ali: ⁓ I had a sister-in-law who was like kind of like that. just like her babies latched and she and she's having babies at the same time I'm having babies and I was like this is not we are not the same you know like this is hard. ⁓ So yeah the comparison thing for sure I I I however you raise your children is the right way for you and your family and that is what my main like learning curve at the very beginning was very difficult for me because I had

Mariah Z. Leach: You Agreed.

Ali: thought in my head that this is what it's gonna look like and I'm gonna do this. This is the job that I know God wants me to do and I'm gonna do it perfectly. And then it was like, this is not how it's happening at all.

Mariah Z. Leach: Mm-hmm. Well, then I think we sometimes forget to factor person and a different person and they have different needs. And you thought was going to work might not work for them. And so it really is like kind of a learning experience. ⁓ and I do think that, that, that picture in your mind of what it's going to be like, it's hard to get away from that, it's okay to change your mind at any time while parenting because you don't. you know, try something different if it doesn't work. And in a way, I think living with chronic illness prior to becoming a parent sort of made me a more adaptable parent because I was used to sort of pivoting and not having control of the situation all the time and having to like listen to my body and do, you know, change the plans or whatever. And I think, I think some of those skills are really applicable to parenting for sure.

Ali: you can't plan you these diseases that we have ⁓ you can't plan ⁓ too ahead because you know if tomorrow you're gonna wake up feeling ⁓ one way or the other what a ⁓ that and you don't know if your kids gonna wake up cranky either so ⁓ it's a

Mariah Z. Leach: Mm-hmm.

Ali: ⁓ I've never had anyone say that like that before and I really love that perspective. It kind of laid the groundwork for being a better parent or a more adaptable parent, I guess.

Mariah Z. Leach: I mean, in a way, I really think it did. And like, and like even just the relationship that my husband and I built, like treating my chronic illness as a shared problem that we had to, you know, work together on and like our communication improved. And then all of that was transferable to being a parent too. And you know, sometimes we have to tag team things. Sometimes one of us feels okay, the other one doesn't. And, and we were doing those things to deal with my

Ali: Mm-hmm.

Mariah Z. Leach: the uncertainty of my illness before we were parents and now that we're parents those skills are still really useful.

Ali: ⁓ How do approach it with your children? Have you always talked about it from the time they were little?

Mariah Z. Leach: You mean? Yeah, I think at an age appropriate level, we've always sort of talked about it. I always think of it's, it's not like a conversation with a capital C that you like sit down and have one time and teach them about it just comes up naturally in day to day life. And we talk about it a little bit and then we move on and if they have questions, I answer them and then we move on. You know, sometimes you're like, I'm gonna have this serious conversation and I'm going to share this really hard thing and they're listening for five minutes and then seconds later they're like, do you think it's gonna snow? So you want to provide them with the information that they need. And with my kids, sort of treat everybody's well-being and the family matters. And so we talk about the different needs that each person has. ⁓ Also, ⁓ there are some decent children's books out there about various chronic illnesses. And some of them, even if you don't have the specific

Ali: Yeah.

Mariah Z. Leach: illness that the book is talking about can still be really useful to like read with little kids and they be experiencing. And so we do reviews of those children's book up on our website. ⁓ So you can see if you a book might be a good fit for your family situation, because that can be really helpful sometimes too, because the kids, feelings about my health and you know, they don't like it when I don't.

Ali: ⁓ I'm

Mariah Z. Leach: feel well for multiple days in a row, or like if I have to slow down when they wish I could participate or things like that. So I think it's important to acknowledge and talk about. And so we just, it's just kind of a part of our world.

Ali: Yes, agree. I often I think about how it's shaping them because on the opposite end of the spectrum, my mother, her father had not an autoimmune disease, but he passed away young from severe heart disease. And it just was something that like she was worried about from the time she was a baby. This is why I always talk to Mike, like not a baby, but like a young person. She was always worried about her father passed away, passed away in her 20s. But

Mariah Z. Leach: Mm hmm.

Ali: She doesn't ever remember a day of her childhood where that wasn't a worry of hers because he had this horrific heart disease issue. And so I think about she talks about that now and I'm like, okay, but they didn't back in 1960s that they didn't talk about with their children. You're you know, the family health, it wasn't it wasn't really something. It was for sure different and what that did to her. So I'm very cautious about, okay,

Mariah Z. Leach: Thank Yeah. It was a different dynamic for sure.

Ali: I don't feel good today. fine. I'll be better in another, you know, a day or two or whatever it is, but we talk. We do spend time. We do acknowledge it, ⁓ but don't use it too much as a huge excuse. Like I do have to take the time, but I have things I have to get done and I'm still doing them ⁓ on a basis. the next family down the street. And that's okay. ⁓ And, ⁓ I think it's, ⁓ yeah.

Mariah Z. Leach: And that's a conversation we have a lot about how our family, our family doesn't have to look how other people's families looks. Every family is unique.

Ali: for sure. And that is kind of across the board with the way we eat, the way we prepare meals. Like we don't have a microwave because I read about that. We don't do this. that's my kids think their friends think we're weird. And I'm like, that's fine. They can think we're weird. ⁓ I'm okay with that. This is what we do in our family. And that's fine. Every family is different. So yeah, I think that that's all very valuable. The more we talk about it to our kids, the more we normalize it, the more normal, again with that word, but the better they will be in the end of it all.

Mariah Z. Leach: I also find it to be ⁓ a good way to model self-care to my kids, talk about how I'm taking care of my health or listening to my body. Because I do think a lot of moms, ⁓ take on everything and then they forget about themselves. And I want my kids to see that I am also a person with needs and feelings and I want to show them how to themselves. ⁓

Ali: Right.

Mariah Z. Leach: When I, when I am struggling and feeling like guilty or feeling like, ⁓ I like, should be able to, I should be able to do this. I should be able to do that. Of course, my husband's always don't should all over yourself is his refrain. ⁓ but, ⁓ but I think in those moments, if I think about it as I am modeling self care to my kids, that makes it a little easier for me to kind of put my own needs first. ⁓ which is easier said than done as a parent.

Ali: Yeah. Well, absolutely. But what a valuable lesson because I, I don't know how you grew up, but my mom was going, going, going, going, going all the time. She had five kids. really, she was working, she was going, going, going, and that was modeled for me. And it wasn't a bad thing. Like, but throwing an autoimmune disease and you can't, you, cannot do that. And part of the reason I was even in mess is because I wasn't paying attention to what my body was telling me for years. ⁓ I agree you that this is, ⁓ our kids are getting ⁓ a different on life ⁓ that hopefully help them balance it a little bit better than ⁓ maybe I But I ⁓ think nailed it. ⁓ really wonderful teach your children self It's not something our society wants them ⁓ to learn at a young age ⁓ at

Mariah Z. Leach: Right, and I sort of hate the term self-care, just like normal is not quite the right word either, self-care is not quite the right word, because sometimes that feels like another thing on your to-do list that you're supposed to do. I do think it is, for lack of a better word, ⁓ is important.

Ali: Yes. Well, I think society said so. Yeah, because society will tell you self-care is go to the spa and get your nails done. And that's not the self-care we're talking about. We're talking about resting when you need to, eating whole foods, you know, do whatever, whatever it is. But it can it can literally be I need a day in bed and that's my self-care. not although getting your nails done can be fun. I'm not saying you shouldn't, but it's totally different.

Mariah Z. Leach: Right. Right. Well, and you know, I'm sure you've heard you know how on the airplane, that flight attendants will say, put your oxygen mask on first before helping your child. That's not my favorite metaphor because I could definitely, there are situations where I'd be like, oh, I'm going to help my child first. And that's to the detriment of you. Like you physically could put your child's mask on before doing yours. So the one that I like is that you can't pour from an empty cup because

Ali: Yes. Yes.

Mariah Z. Leach: that one, like if you, if your cup is empty, it's physically impossible for you to give to anybody else. And so I, that's the one I use for my eyes that have to make sure there's something in my cup before I, before I give to others.

Ali: I use that same exact analogy. It's kind of crazy. Awesome. So what do you, what do your days look like now, now that you have older children, they're not in babies and diapers and all of that. What, what do you, what did it look

Mariah Z. Leach: Yeah, it's a new and exciting stage where my youngest is eight and so, you know, like they can be unmonitored temporarily and they're not going to kill themselves immediately. It's a whole new stage. ⁓ You know, now the challenges are more like keeping up with homework and staying on top of assignments and, you know, staying organized. And those are things that we're working on in our family. Two middle schoolers this year. So that was a big, I've got one going off to high school next year. You know, and I think we were all kind of learning to function in this new stage. ⁓ I spend a lot of my own time doing writing and working on this particular topic has been my kind of passion topic. ⁓ I'm right now working on a book proposal for ⁓ basically a guide to pregnancy when you have chronic illness, because, you know, if you go to a bookstore and you pick up a pregnancy book, it assumes good health as a baseline and then tells you everything you need to know about pregnancy. But that's just simply not the reality for so, so many of us. ⁓ And so I think a resource needs to exist. That's like, all right, you are considering pregnancy. What questions do you have about your own health along that process? You know, so I want to give people resources on, know, how do you make decisions about medications? What questions should you ask your doctor? Like what you do if you're, if you're struggling to conceive. I remember When I was trying to get pregnant the first time, the only resource I could find about pregnancy and arthritis was this book. It was called Arthritis Pregnancy and the Path to Parenthood. And it was written by a woman living in Australia. So I ordered the book all the way from Australia and it wonderful. Like that was the closest I got to like having a real person be like, you can do this. But I remember she skipped right from like, here's what you talk to your doctor before you conceive to. ⁓ And now that you're pregnant, here's what you do. And there's a whole stage in between there that's challenging for people. And if you're living with pain or you're not on your usual treatments, like that's a challenging stage too. So I think there are gaps the out there for people who are living with chronic illness. And that's what I'm hoping with this book to fill.

Ali: Thank you. I think that's beautiful. I would have loved to have something like that. My first pregnancy was a miscarriage. I was young and I didn't know what to ask the doctors, if I'm being honest. I just was kind of deer in the headlights, especially when it came to pregnancy and babies. I just remember having this aha moment after I lost the baby that was like, well, obviously... I don't, my body is a disaster right now. Why would I ever think this was a good terrain to house a child for nine months? You know, but no one had ever really talked to me about that. I never really thought about it. So then I had to do some work to get my body like calmer, quieter. But yeah, I can.

Mariah Z. Leach: And that's an important too. ⁓

Ali: Yeah, yeah for sure and then when I had my other daughter it was you know I went into it with wide-open eyes and more realistic about it all. I was also very paranoid because I had a sister that passed away from SIDS so I was all like so scared and so nervous for so many years and that's not a good environment to be know pregnant and it's just that fear was so real and So I think that's a beautiful thing and I look forward to reading your book even

Mariah Z. Leach: I mean, I just, many, there are so many unknowns when it comes to parenting and moms in particular, I think get a lot of judgment for the decisions that they're making. And like, in reality, everyone deserves to feel supported for the decisions they make that are right for them and their family. And like, there are some great resources out there, but they're not that easy to find. ⁓ I think would be better if, if, if not only like,

Ali: people.

Mariah Z. Leach: I don't know if you had this experience, but I certainly in my pregnancy had, I'd have my room, I'd have a question and my rheumatologist would say, ⁓ I don't know, ask your OB. And then the OB would say, ⁓ I don't know, ask your rheumatologist. And I was left in the middle going, well, I'm not a doctor. How am I supposed to know who to listen to, what to do? ⁓ And so like later with my third pregnancy, I learned about maternal fetal medicine specialists and MFM doctor. It's like, it's a high risk pregnancy doctor, which sounds scary.

Ali: Mm-hmm. Thank

Mariah Z. Leach: You're like, I don't want to think of my pregnancy as high risk, but all it really means is that they are specially trained to deal with complicated, more complicated pregnancy cases. so on my third pregnancy, I was able to consult with one and like get the help and support that I needed to like answer those questions and feel confident about those answers. And so I think there's information that people who are considering, you know, the path to parenthood might want to think about on their way. it's not necessarily going to be offered.

Ali: Yeah. Thank you.

Mariah Z. Leach: by their doctors, because sometimes the doctors are not educated. The rheumatologist may not have ever had a pregnant patient before, and the OB has never even heard of the medication that you're on. So it can be a challenging world for sure.

Ali: Yes, that is absolutely that was my experience for sure. And I think it's just a symptom of a larger problem with the medical community. Like no one looks at you really as a whole. It's whatever you're there for. And you have to try to navigating it all together is very difficult. ⁓ But I think it's especially true for young.

Mariah Z. Leach: Mm-hmm. And it's a lot of work. It's a lot of work to stay on top of like your own healthcare. And then when you throw the baby into like that's even more work. so I can offer some kind of guidance based on what I've learned and also the like, I have had the opportunity to work with some researchers. I was once asked to present to the FDA, the Food and Drug Administration about what it's like. So I think I'm hoping to educate both. patients and providers and like make it a easier process for ⁓ people with chronic illness who are considering pregnancy.

Ali: Well, this is amazing because one of the first interviews I did was a young girl and she has already had one son, but she was hoping to have another. So I definitely want to connect you guys because I think, you know, first pregnancy did not have a rheumatoid during her first pregnancy. And that is something that happened in between.

Mariah Z. Leach: That would be great! Mm-hmm. That's pretty common. Yeah, getting diagnosed after a kid is pretty common, too.

Ali: pretty common. It's going to be something with the body and the hormones and the stress. think stress is really undervalued or underappreciated. Valued is the wrong word. Underappreciated for what it does to our bodies. I know for me it is my biggest trigger by far.

Mariah Z. Leach: Right. But I hope you will connect us because I think there's some magic in being able to connect to parents who actually understand what you're going through. And that's what I think the Facebook group that I work to try to keep as positive as possible, but it becomes this hive mind so that each of us isn't reinventing the wheel all by ourselves for every little problem that we face. And people really come together and share resources and share ideas. ⁓

Ali: Right.

Mariah Z. Leach: I always, my example is always that years before I ever had a girl myself, someone came onto the group and said, she was having a really hard time putting her daughter's hair in a ponytail. And it was, you know, it's impacting how she felt about herself as a mother. It was impacting her daughter's self-esteem. and it seems like such a small thing, but like it mattered to this person, like that she was struggling with this and she's like, what could I do? And I didn't have the answer for her because I, you know, I didn't have a girl. And I hadn't had tried to put a ponytail in anyone else's hair. So, but people from the group popped up and said, you know, we'll try this product or here's a video of this technique or even just solidarity. Like I have had this problem too, and it sucks. That is so meaningful to someone who is struggling. And that's the aim of the group is to kind of lift each other up and learn from each other's experiences so that we're not doing it all on our own. Cause it can feel really lonely when, when you're surrounded by parents.

Ali: Mm-hmm.

Mariah Z. Leach: who are functioning better than you are.

Ali: A thousand, a thousand percent. I have that same exact memory of me trying to brush my kids hair and I can't do it. And then you drop them off at preschool and so and so's hair is like. Well, beautiful. And I struggled to get their boots on that day. And, know, like. And you do feel so isolated, especially if you're suffering and going through these seasons in the winter when everybody's locked in the house anyways and you don't get out as much.

Mariah Z. Leach: You feel judged! You feel judged!

Ali: I can remember that when we lived in Boston up until seven years ago. I You're so right. You it's very isolating. It's very lonely. You feel like people are looking at your kids weird because you didn't Get their hair whatever it is So I think that your Facebook community and your book and all of that is it's beautiful Really? There's no other way to say it because it's very much needed

Mariah Z. Leach: Well, I actually, and I love what you're doing with the autoimmune mom because that was something that I discovered slowly was that at first I thought, ⁓ I can support other moms who are living with rheumatoid arthritis. But as I got to know other people, I realized that it doesn't really matter what your exact diagnosis is. If you're living with a chronic illness, we have so much in common. Like there's a lot of people in our group who are living with IBD, Crohn's, ulcerative colitis. Multiple sclerosis, like whatever it is, like we have, are facing a lot of the same challenges as parents. Some of us are even, some of the medications are the same. The barriers to getting those medications are the same. Like the guilt we feel about having to skip events is the same. And so I love that you're doing the autoimmune mon because there are so many different specific diagnoses, but I think the content is still relevant to everyone, regardless of your, not everyone, but regardless of your diagnosis.

Ali: Yep. Well, with an autoimmune, I often say to that, you know, people who are not diagnosed yet, ⁓ especially moms, they're asking these questions, they're trying to find it. They don't know what they have. They think they're going to get their diagnosis and everything's going to be fine. As you were saying, I'll take this medicine and I'll be fine. that's almost. ⁓ it's like high 90 % chances that the first medication you take is not going to be the answer to all of your problems.

Mariah Z. Leach: Yep. And maybe you will, Sometimes that happens. ⁓ Right, right.

Ali: And it doesn't really matter what the label is if you feel like if you're can't get out of bed or you know what I mean like it's that's why I did autoimmune because it doesn't the label of whatever it is Most of the time it doesn't matter. It doesn't matter if it's rheumatoid or if it's irritable or ulcerative colitis like you're miserable I'm miserable. We're trying to raise kids, you know it and we need Yeah, and we lift each other up and support each other all the time in a million different ways and this little area that we're all There are this little club that we're all in is not a fun club and people don't want to talk about it, but

Mariah Z. Leach: And we have a lot in common across it.

Ali: Once you do start talking about it, you realize there's a lot of people out there in this boat and they're all quietly suffering. I think it's great. The more community we have, the better.

Mariah Z. Leach: Mm-hmm. Yeah.

Ali: ⁓ Do you have any practical parent survival tips you might share ⁓ for you're in a flare That's a tough question.

Mariah Z. Leach: Sure, let's see. One thing that I did when my kids were little that really helped me a lot was to use a system of toy rotation, which meant that only a few of our toys would be out in the playroom at any time and the rest were stored in the closet somewhere. And the way that this helped me was, first of all, there were fewer toys to pick up every time the playroom was a disaster. And then... But the beauty of it for me was if I had a day where I felt yucky or needed a little bit of extra help or I didn't have a lot of energy, I could pull these quote unquote new toys out of the closet and put them out in the playroom and they would be more engaging. I don't know if you've experienced that, but somehow that toy that no one's touched and you're about to donate it to charity because no one's touched it for three months and then suddenly it's the most exciting toy ever. And so system, gave me the opportunity to make exciting toys magically appear anytime I needed them. And then I put the other ones away for a while. And then a few months later, they'd be come back out as the toys. And so I think we got really good use out of all of our toys that way. And it gave me like just extra sort of boost ⁓ ⁓ ⁓ other thing would say is, ⁓ most people have heard of Brene Brown, of her work at all.

Ali: that. ⁓ Yeah.

Mariah Z. Leach: She's a she's a shame researcher. And she her one of her books is called the gifts of about ways to live a wholehearted life and how to basically kind of let things let go of society's expectations. And so one of her things that has really helped me is she talks about how being busy and being ⁓ engaged and doing stuff all the time is kind of seen as a status symbol in society to just be doing all the time. And she talks about, why don't we let go of that put some value on rest and play and, you creativity. And ⁓ our has really kind of embraced that idea of like, ⁓ we have to do everything that everybody else is doing. ⁓ We can some time for ourselves, for rest, for play, for ⁓ family for example, my kids, you know, I have friends whose kids are doing two, three, four extracurriculars each. My kids are not. ⁓ They're each doing one that they're interested in. Sometimes we change to a different one. I don't feel as if we're limiting them, but we're making the choice to focus on things that they're really excited about and then preserve some of our time as a lot of commitments.

Ali: I think that's great. We do something similar. We meet our kids where they're at and the season that they're in and we support them through the one activity that they are into at that moment. ⁓ up Barnes and Nobles because she wants to get a new book or something, like that's it. If it's a sport, we're into it. We do that. But we don't over schedule either. I can't. I physically can't do it. ⁓ And think there's value and rest that's underappreciated in this ⁓ society we live in for sure.

Mariah Z. Leach: And even personally, I have like looked at what my kids' friends are doing and thought, ⁓ gosh, am I holding them back? They instrument, they didn't start a sport, didn't like, am I holding them back? ⁓ So reading passage from Bernabéron really helped me be like, no, it's okay to make this choice of what I know is right for my family. It's better for all of us ⁓ if we our time, if we kind of give ourselves the space to just be together and have fun and you know, family on the weekend, because we're not running around to 19 different games. ⁓ For us, it's made a really big difference. ⁓ hearing her words, were based on research, and I think my ⁓ student academic brain like, ⁓ if it's based on research, then it's good. ⁓ It made me better. So

Ali: Well, and also, the longer you live with these illnesses, the more you realize that slowly. If you're really paying attention, you cannot burn the candle at both ends like this. You pay the piper at some point. And I think it's great to teach your kids at a young age. We do this. Like one of my kids is into sports and the other one isn't. And that's fine. We do run around a little bit with sports, but that's because that's her goal right now. And as soon as that happens,

Mariah Z. Leach: Mm-hmm. always some running around, for sure.

Ali: When that's over, we're done with the soccer. I'm done. ⁓ But yeah, it's, think, protecting your peace. You have to, in this world. ⁓ Here's a good question for you. How are you finding joy inside of the craziness of motherhood with autoimmune?

Mariah Z. Leach: Mm-hmm. You know, I guess I've never known motherhood any other way. So it has always been a part of my journey. I knew it would be from the beginning. ⁓ I think, and this sounds cliche, but I find joy in the little things, in the time that we spend together, in the little activities that we get to do that matter to us. I really enjoy, ⁓ my family likes to take pictures lot, and I really enjoy making little slideshows each year of all the wonderful things that happen. Cause you know, pictures are usually of happy events. don't usually take a picture of yourself on your worst day. And so it's nice to think back and like see all the things that, experiences. And that kind of validates the choices for me to look back and see the fun and the joy and the experiences that they've had, you know, regardless of how our family is different from other families.

Ali: Yeah. when you're like when I'm a down day I'll often flip through my phone and look and just smile at what they were with You know scrolling Instagram or you can just look at what you built ⁓ and enjoy it ⁓ because is hard when you're not feeling good ⁓ but there's a lot a of good out there. ⁓ So ⁓ one last question you if you are talking to young

Mariah Z. Leach: That's a good, it's a good, it's a good pick

Ali: woman who's considering having a child, what's your number one piece of advice for her?

Mariah Z. Leach: as a woman with an autoimmune or chronic illness. ⁓ I mean, I think maybe this is the same advice to anyone is to, I think, obviously you can't plan for everything in parenthood or pregnancy, like, and stuff is definitely not gonna go according to your plans all the time. But I think as far as like, if you're considering pregnancy with a chronic illness, it's really important to understand all of your treatment options. ⁓

Ali: Yes, yes, I'm sorry.

Mariah Z. Leach: whether you want to try to go med free during your pregnancy or not, like it's still really important to understand your options. And it's important to make sure that those options are the most up-to-date ones because that data changes really fast. Like I had, my oldest is almost 14 and my youngest is eight. And even in that span, I had completely different options with my third pregnancy than I did with my first. So you want to make sure there's a really great organization called Mother to Baby that, researches ⁓ exposures during pregnancy. So they have the most up-to-date data on which meds are safe for pregnancy or breastfeeding and which are not. And you wanna make sure that your doctor is giving you the right information because you have to kind of do your homework. have to check your doctor's work because they're not always completely up-to-date on that. so understanding your options is really important. And then planning a little bit, plan for the possibility of a postpartum flare. See what you can put in place in advance. to make things easier after the baby comes. And of course, you won't know exactly what you'll need or exactly what it will be like, but if you can put some meals in your freezer or set up a meal train or the one that I think, you know, right after a baby is born, usually about six or seven weeks later that that postpartum flare appears. And by then, help being offered has kind of tapered off. So if you can sort of reserve some of the help that your friends or family might be able to be willing to give you for a few weeks after, I think that can be a really good strategy too to help get through that patch.

Ali: Mm-hmm. Yeah, absolutely. ⁓ and willing to take the help, I struggled with that. That was a very difficult thing for me. ⁓ I don't like ⁓ asking help ⁓ And I think, ⁓ just was clueless. had no idea. ⁓ Yeah. ⁓ For sure.

Mariah Z. Leach: That's a hard one. Talking is really hard. No, I think asking for help is really hard. And the way I got better at that was I started by accepting help when it was offered. You know, my mom would be like, I'm going to unload the dishwasher and I'd be like, ⁓ no, it's fine. I can do it. It's fine. But instead of saying, no, it's fine. I would just say, yes, Yes, thank you. Whatever help was offered. And once I got used to kind of accepting the offered help, it became easier to say, well, actually what would help is this.

Ali: the

Mariah Z. Leach: Because there is, you know, people will say, let us know if you need anything. What can I do? Let me know what I can do to help. And that kind of puts the burden on you to figure out how they can help. And that's challenging. But if you if you can think of some ways that people might be able to help you, that you can give to them when they offer, ⁓ that can be helpful too. You know, like we'd really appreciate a meal. Right.

Ali: even telling people. Right. Even just telling people in the forefront of I didn't know. They didn't know. ⁓ No doctor ever mentioned it to me. I think to research it. I just didn't know. ⁓ And so ⁓ no one really to check in on me. I laid nothing out. I had none of that. ⁓ So I just being and knowing, like knowing is half the battle, as they always say. ⁓

Mariah Z. Leach: Yeah. Mm-hmm.

Ali: I think, yeah, asking for help, knowing that you might need it and accepting that is a big, big,

Mariah Z. Leach: And I think if somebody really cares about you and they're offering help, letting them help you is an act of love. They're showing that they love you, allowing their help is showing that you love them. Mm-hmm.

Ali: They don't want to see you like this. ⁓ You need to bless by letting them help you. So that's how I had try to reframe my brain. like, this isn't it's about me, I need the help and my baby needs the help, but also ⁓ they need to feel ⁓ that they are helping and doing something and ⁓ contributing in some kind of a way. So ⁓ it's a ⁓ two-way street.

Mariah Z. Leach: Mm-hmm. Yeah, and the truth of the matter is all moms, every single mom ever needs help, ⁓ of what their health is like, if they have a chronic illness or not. Like ⁓ that, especially in that newborn, they all needs help. And I think knowing that and saying, okay, I will accept help through this period is, you know, a powerful step in like taking care of yourself. Model self care to that baby. Yeah. ⁓

Ali: and your baby. Yes, I mean, I think at one point my thought was like, OK, I don't want this help, but my baby needs this help. So I'm going to follow my pride and take it.

Mariah Z. Leach: Right, and you know, yeah, reframing it that way is often a helpful way to kind of get yourself started is, because it is really in the baby's best interest to have you as healthy as possible. So what do need to do to do that for your baby if you can't do it for yourself?

Ali: Yeah. Right, right. Yep, that's what got me around to it. ⁓ But yeah, well, Maria, I've really enjoyed this conversation with you. think we have so much in common and too bad we didn't meet 15 years ago when we were both going through this. But.

Mariah Z. Leach: I know, right? glad to have found you now, because this is such a cool resource that you're creating.

Ali: you. Yeah, if you know of anyone who has a story that they'd like to share I would love love love the opportunity to meet them and I'm definitely gonna connect you with ⁓ Gosh I can't think of her name right now because I'm on the spot and my ⁓ brain and my autoimmune ⁓ ⁓ But I'll connect you with her ⁓ anyone else that I come across for sure

Mariah Z. Leach: will put the word out, yeah. That's how it works. That's how it works.

Ali: I will put obviously in the show notes your Facebook and website and yeah, think I can't wait to read your book. I'll definitely read it even though I'm out of that stage just cause.

Mariah Z. Leach: Well, it doesn't exist yet. It's just in a proposal stage, but hopefully it exists someday.

Ali: It will exist someday. I'm I know that for sure