MS & Motherhood: Planning a Family Through Uncertainty

MS & Motherhood: Planning a Family Through Uncertainty

Episode 199 – Podcast Transcript

[(0:24)] Stephanie Buxhoeveden: Welcome to the Can Do MS podcast. I’m your host, Stephanie Buxhoeveden. I live with MS and I’m also a clinician and MS researcher. Today we’re gonna be talking to Emily Reilly, who’s here to talk to us about navigating pregnancy and motherhood with MS. Hi Emily, I’m so excited to talk to you today.

[(0:41)] Emily Reilly: Awesome. Thanks for letting me be here.

[(0:42)] Stephanie: So, let’s start with your story. Can you take us back to when you were diagnosed with MS?

[(0:48)] Emily: Yes. Man, my diagnosis story started 20 years ago, which is so wild. And for our listeners, obviously, you can’t see me because we’re just audio. But I am over six feet tall, so I’d like to say that my height did not go to waste. Um, my- oh, you know, sports were a huge part of my life, and my ultimate goal was to go play college soccer and I refused to let anything stop me. But as we all know, life throws us curve balls and I was a senior in high school and I had just signed a four-year soccer scholarship to my dream school when my life flips up- flipped upside down when I was told, “Emily, you have relapsing-remitting multiple sclerosis”. And ugh, I mean, at the age of 17, what my future thought was gonna look like felt very uncertain and scary. And I wondered if this diagnosis was gonna stop me from pursuing my dreams. But um, growing up, quitting was never an option. And um, I was so thankful to get connected to an MS specialist right away. And he helped me really understand what MS was, um, the importance of staying on a disease modifying therapy. And he also encouraged me to not let MS stop me and to go play college soccer. And that’s exactly what I did. I played all four years of college soccer. I was an all-American goalkeeper, and it was just like really exciting and empowering time in life. And after college more adventure was to come. You know, I wasn’t really sure how MS was gonna impact my life when it came to finding a partner and possibly having a family. But little did I know that volunteering at a camp whose kid- for kids whose parents live with MS would be the place that I would meet my husband.

[(2:19)] Stephanie: That’s so adorable. And you know, you and I have known each other for a very long time. And so, listening to you, I think it’s very easy to assume that you were diagnosed [inaudible] but you had it easy. When in fact that is not the case, you actually have a pretty aggressive path with MS, especially when you were young, you have lots of relapses. And so I think on the surface, you’re very accomplished and it’s easy for people to assume that that came easy, but tell us a little bit more about how- how MS truly affected you and how you came to overcome that.

[(2:56)] Emily: Yeah. You know, like I said, I was diagnosed at such a young age, and I went on to go play college soccer, which was such a dream. Um, but it really forced me to learn to listen to my body, um, and to really adjust and to adjust to like what a new normal look like, which is really hard. I mean, I have a ton of pride and to constantly compare myself to like my teammates and not being able to like physically do some of the things that I used to be able to do was just like a really hard adjustment. Um, and then also in my senior year of college, like right after I signed my soccer scholarship is when I got optic neuritis for the first time. So, I lost my vision in college at the age of like 21. And that was really scary and really hard. And it really forced me to like start to reev- reeva- reevaluate things and make different decisions on what medication I was on to um, you know, the stresses of life and having to change jobs and lots of different things like that. And so, MS really forced me to yeah, be able to make decisions um, that was best for my health and for me. But like I said, I didn’t really want MS to stop me or define me. And so, I really, um, it was like a really empowering time too of um, all those different decisions that I had to make. So, yeah.

[(4:10)] Stephanie: Yeah. And I think your resilience is inspiring. It’s inspired me and I know it’s inspired a lot of people in the MS community. And as you said, you were just laser focused from day one. Um, so it’s been, you know, you meet your husband at- at the camp and you both are very focused on careers and travel and just living. Um, so, when did family start entering the picture in the conversation for you?

[(4:34)] Emily: Yeah. So, it was funny because Kevin and I, we met in September and then we were married in July. So, within eight months, I went from single to becoming a military spouse because he was in the Air Force at the time. And so yeah, life went from like 0 to 100. And um, we, at the time we lived in Florida right after we got married and Kevin was in special ops um, side of the Air Force. So, he was gone like 200 days out of the year. And so, um, our time together was pretty minimal. So, what I did was I really poured myself into my career, which was diving into the fitness world of creating um, adaptive fitness classes for the MS community and creating what- what’s now called Keep Moving with Emily. So, I really devoted a lot of my life to that and just finding community and finding purpose while Kevin was gone and deployed all the time. And so um, it wasn’t until like, I don’t know, after a few moves and the end of Kevin’s 20 year career in the Air Force is when we kind of started to reevaluate what we wanted our next chapter to look like and kids were kind of starting to become part of that conversation, um, which is kind of wild because you’re like, “We’re about to retire from the military and we’re older”. We’d been married for 14 years. Um, and then all of a sudden, kids were now part of the conversation, so.

[(5:48)] Stephanie: Yeah, yeah. And we will, you mentioned briefly, keep moving with Emily. We will put that link in the chat because I have a feeling after we get deeper into our conversation, people are wanna, are going to wanna know how to find you.

[(6:01)] Emily: Yeah.

[(6:02)] Stephanie: And I will vouch for you being an amazing trainer. You, you hosted a fitness class for the patients of my clinic once upon a time, way back when.
Uh, and it’s been so, I guess it’s so fun to watch you evolve as a person over the last decade plus that we’ve known each other. And so, I was very excited to know that you guys were in this place where he was home more, you’re ready to start a family. And I’m sure you went into it sort of with preconceived notions of how it was going to look, but what did you expect the process to look like?

[(6:35)] Emily: Yeah. Wow, was I naive? You know, we were like a year out from Kevin retiring when we started trying for a baby, and with that came like a lot of planning too of, you know, like with disease modifying therapies and other medications that I was on. But I was definitely naive when it came to how I thought it was gonna be easy. I mean, I was 34 at the time, which is older than I ever planned on having kids. I really wanted to be done having kids at 30. But, you know, again, life just- you make plans and then God laughs, right? And so, um, I assumed it wouldn’t have been as challenging of a process than I expected. And so, um, I actually did get pregnant right away, which was so exciting. And we started to daydream about what life was gonna be like, um, with this baby. Um, but this was my first pregnancy, so I didn’t really know what was normal. Um, but when I experienced like bleeding, I knew something was off and after ending up in the ER a couple of times, I found out that I was having an ectopic pregnancy. And so, I had to go in for emergency surgery to remove a fallopian tube. And uh, so yeah, that was my first experience with pregnancy loss, um, which was physically and emotionally and um, mentally challenging, something I never expected.

[(7:56)] Stephanie: Yeah. And something that is incredibly brave of you to speak about today. And it’s just, I can’t imagine that being your first experience with pregnancy and- and with MS, and again, you got pregnant so quickly. And this is another inflection point in your life, right?

[(8:18)] Emily: Yeah.

[(8:18)] Stephanie: Much like the time when you got hit with your MS diagnosis, this, this was probably one of the bigger events that you’ve had to face in your life.

[(8:27)] Emily: Yeah. You know, you- sometimes you think, “Okay, MS diagnosis, cool. I’ve hit my, you know, hard thing in life”. But um, yeah, it definitely was challenging because um, you know, when you’re dealing with pregnancy loss, um, you’re, you’re like dealing with it like physically the loss, but then also mentally and emotionally and like spiritually. Um, but I also still wanted a family. And so, then I wanted to keep trying for a baby, which can really feel all consuming, um, the trying to conceive journey. And so, it can be really discouraging. Every month you get like negative pregnancy tests, and you add on MS on top of that.

[(9:07)] Stephanie: Right.

[(9:07)] Emily: Um, and the reality of like, “Okay, I want a baby, but I also need to manage my disease. So, like, how do I balance this?” And that can be really challenging and feel a little bit like Russian roulette every time you delay your medication to keep trying for a baby.

[(9:21)] Stephanie: Yeah. Yeah. There’s obviously no clear path, that uncertainty, right? Which those of us living with MS, to a large extent, we’re pretty used to living in uncertainty, but this is a whole another level.

[(9:35)] Emily: For sure. Yeah. And so, it’s just kind of, I mean, we all have our own um, threshold of like risk versus benefit, you know, with anything, whether it’s like changing a medication due to risks with the medication to, “Do I try one more month and delay my medication one more month?” And luckily, I had like really open communication with my neurologist of just where I was at. And um, eventually I kind of got, did some like blood tests to kind of see where titers were to know, “Okay, yeah, like things are kind of starting to come back. We should probably um, focus on managing my MS first and then trying again,” which was honestly kind of a, a blessing because it kind of gave me an opportunity to take a break from trying to conceive and also give me peace of mind knowing that I was taking back that control and um, and ma- and managing my disease knowing that, “Okay, I got another, you know, six months to try or whatever”.

[(10:25)] Stephanie: Yeah. And you know, to preface this conversation with the fact that MS in uh, in of itself does not reduce fertility. It does not have an impact on your ability to conceive or ha- have a healthy pregnancy. Um, but the complexity comes in around treatment timing, right? Going on and off of treatment, trying to time that to the best of our ability when sometimes these things are not easy to plan as we’ve just talked about, but you did everything you were supposed to do, right? Having those conversations early and often with your healthcare team. And what was that like for you? Did you have to get a second opinion, or did you feel comfortable working with your doctor?

[(11:12)] Emily: Yeah. I think it’s important for any- anybody out there, you know, any patient out there to feel empowered to be your best advocate and- and to get a second opinion if- if you feel like you just wanna hear somebody else’s thoughts. Um, and so, yeah, that, that- that journey was interesting because not only was I talking with my neurologist but then I was kind of doing a little bit of research on my own and, and I was like, “Well, I’m gonna ask another doctor just to kind of see like what is their opinion on the safety of- of trying to conceive on the current medication that I was on”. Um, but then I was also meeting with um, fertility doctors just because of my age and because of our pregnancy loss, because we had had two from the ectopic to another one. I really wanted to see like, “Okay, what are my chances?” Because I don’t wanna keep delaying things if my chances are really low. And so, it’s really important to have that like comprehensive care team of everybody working together and making sure that we’re making the best and informed decision. And so, um, yeah. So, getting a second opinion was super helpful and it just gave me confidence knowing that I was making yeah, uh, an informed decision when it came to the timing of, of um, conceiving after my infusion.

[(12:18)] Stephanie: Yeah. And now, happily, you did go on to have a successful pregnancy.

[(12:23)] Emily: Yes.

[(12:24)] Stephanie: What was that moment when you found out you were pregnant again? What did that feel like?

[(12:28)] Emily: Oh, wow. You know, um, pregnancy after loss is really complicated because, you know, at the time I had only known loss, and so you kind of just didn’t expect for an up- like the shoe to drop. I don’t know. And so, when I saw that- those two pink lines, I was like, “Okay, like we’re pregnant again, but I don’t want- I wanna be like cautiously optimistic about this”. Um, and because of our previous losses and because of my advanced maternal age is what they call it when you’re over 35.

[(12:57)] Stephanie: That’s so rude.

[(12:58)] Emily: I know. I know. It’s so annoying because there are plenty of women out there who are having successful pregnancies beyond that time frame. But I was um, not only seen by my OB, but I was also being seen by what’s called an MFM, which is a Maternal-Fetal Medicine doctor. They work with people who have like um, maybe like other health conditions while pregnant, high-risk pregnancies, multiples, things like that. So, what was really nice was I was kind of um, having extra oversight of this pregnancy, um, which gave me a lot of peace of mind because we kind of got um, more frequent scans, more frequent visits, just to make sure that this pregnancy was- was viable and was gonna be successful. So, I was super grateful for that. And hearing the heartbeat for the first time was so amazing because I think that just gave me peace of mind that, “Okay, this is the baby that we’re gonna get to bring home”. And it was. Yeah.

[(13:48)] Stephanie: Oh, I love it. Yeah, I love that.

[(13:50)] Emily: Yeah.

[(13:50)] Stephanie: And most women with MS are not considered to be a high-risk pregnancy. Whereas you mentioned it was more of an age and any previous experience with loss. Um, but the good news is MS in of itself does not inherently make your pregnancy more high-risk. In fact, many women with MS feel pretty great during pregnancy. How did you feel?

[(14:13)] Emily: Oh, I’m so grateful how I felt with this pregnancy. You know, so, you know, they always say sometimes your symptoms can kind of be at bay during, during pregnancy and that was my experience. Everyone’s’ is different. So, I do want to preface it with that. But typically, like for me, my most pronounced symptom is pain or spasticity in my legs. And I’m usually on a MS um, symptom management medication to help with that, but that’s actually not safe for pregnancy, which is just important to talk with your doctors about all the different medications that you’re on um, just because some things aren’t safe with pregnancy. So, I was a little scared to get off of that because I was like, “Oh no, like what’s that gonna be like?” Because it is a really uncomfortable pain in my legs. Um, but it surprisingly wasn’t an issue during my pregnancy, which I was super grateful for um, to not have to experience that symptom. And um, again, this is like my own experience, but I have actually remained off that medication even postpartum. So, I’m super grateful for that and who knows what the explanation of that is, but yeah, so I’m feeling really good. And not only did I feel great during this pregnancy, I also remained active, which was really important for me. Like, you know, I think even as a fitness instructor I always say like any movement is good movement. Um, and so for me that looked like sometimes teaching water aerobics to taking a water aerobics class to just going for a gentle walk. And so, giving myself a little bit of grace but staying active during this pregnancy was so helpful for me physically, mentally, and emotionally. And then also postpartum, like, it helped with recovery. And um, yeah, so I’m still active today.

[(15:45)] Stephanie: Yeah, yeah, it really does help. And your ex- your experience is pretty typical. Again, not everybody has the same experience, obviously, but MS um, does calm down during pregnancy. Pregnancy has this protective effect, and that protective effect really peaks in the third trimester. Um, but on the other side of giving birth, we do see that sudden sharp increase in relapse risk. However, there are studies that have shown women with MS who have had kids or multiple kids, actually in the long term, sometimes have better outcomes than women who never have kids. So we know that even with that short period of time where you’re more at risk for relapse, even if you do relapse after pregnancy, in the overall long run of your life with MS, pregnancy is definitely not setting you up for being more disabled than any other woman and might actually um, set you up for better outcomes. Maybe who knows, because you have a little break to be determined? Science hasn’t answered that question completely yet, but I- I find that really encouraging that the data shows that again, this is a very normal and safe thing for women with MS.

[(17:02)] Emily: Yeah. Because the post- I think what scared me the most was postpartum. Like, how am I gonna respond? Because, you know, they always say like in my life experience it’s been like huge major changes in life or big stressors in life usually often is followed by a relapse. And so, I was like, “Oh no,” you know, with all the different hormones that are like getting out of your body postpartum. I was like, “What is this gonna look like?” But thankfully the medication that I’m on, it is um, safe to get like an infusion a couple of weeks postpartum. And um, so knowing that I could get back on medication pretty quickly um, definitely gave me some peace of, peace of mind.

[(17:35)] Stephanie: Absolutely. I mean, when, when did you start having those conversations about restarting your medication or how you would manage your MS postpartum?

[(17:44)] Emily: Yeah. I met with- because we- we moved during my pregnancy, which also, you know, anytime you move is always a challenge as a patient with MS, because then you got to like establish some care and you’re like, “Oh”. But luckily, I found an amazing MS specialist close by. So that first initial appointment was also about midway through my pregnancy, which was great timing. Because then it was like, “Okay, what is the plan postpartum?” And um, you know, when we talked about the timing of getting my next infusion to, “Can I breastfeed while on this medication”, which is always something you wanna consider because obviously my goal is to do that. Um, to- that was the choice that I wanted to make for my baby. And so, knowing that I could get my infusion um, you know, uh, postpartum along with breastfeeding was really encouraging. So, one of the things that I learned though is that some of the premeds that come along with this infusion can sometimes affect your milk supply. And so, my neurologist and I talked about that, how maybe it would be better for me to wait four weeks instead of two weeks postpartum. And so, I felt really comfortable and confident with that decision as well um, knowing that it was, it was safe, so yay for research. And um, I’m actually getting- I actually am a part of that- some research on this particular medication and breastfeeding, which is great because I think it’s just really important for us to have more knowledge when it comes to safety and those things so that women can feel empowered to make those decisions.

[(19:03)] Stephanie: Exactly. And like you said, it is a decision. It’s a decision between you, your family, and your doctor, right? And I would emphasize there’s really truly no right answer for everyone. It’s just so individualized about when you resume medication, breastfeeding, um, but you need all of the information and input you can get before you make those choices. So again, you did everything right. And now you have a beautiful baby and you’re still in the infant stage. How has that been?

[(19:39)] Emily: Yeah. Man, little man is eight months old now and it’s definitely a roller coaster of emotions. Like, I go from like absolute joy to feeling overwhelmed and exhausted kind of like simultaneously sometimes. For a period of time, I was keeping like an emotional log because I was like, “Oh my gosh, why am I crying about whatever?” Um, and so, I just wanna say like, you know, being really in tune with your body and how you’re doing is super important anyways, but then postpartum too, just, you know, um, because there just comes a lot of challenges from the sleep deprivation. The sleep exhaustion is a real thing. And I am just really grateful for my husband. He’s just been so helpful um, with balancing the tasks that come with taking care of a baby and keeping them alive. Um, and so yeah, that sleep exhaustion was real. And then you add MS on top of that. And sometimes the fatigue was very crippling for me. And so, they say like, take a nap when the baby naps and it’s true. I, I still do that to-today just to make sure that I’m, you know, fully there because my husband’s in school and he’s, you know, I’m the one taking care of him most the time during the day. So, I wanna make sure that I am um, you know, feeling the best but we also have to give ourselves a lot of grace and not compare ourselves to other moms who seem to be doing everything perfectly right. You know, it’s a highlight reel on, on social media.

[(20:55)] Stephanie: There’s no such thing.

[(20:57)] Emily: No, no.

[(20:58)] Stephanie: Do you feel like having MS and having to be resilient in the face of challenge, do you think that helped you cope with this stage?

[(21:07)] Emily: Oh, for sure. Yeah. Um, I think, you know, since I’ve had MS for 20 years now, I think I’ve just really learned to let go of a lot of expectations of like those high expectations of like, “I must be perfect. I must do everything”. Um, and I’ve just really learned to lean on the people around me and to not feel shame when I ask for help and not feel shame when I need to lay on the couch and let the baby lay on the floor. Like, because that’s what’s gonna set me up for success. And I think that that’s really important thing to practice and giving yourself grace. And yeah, leaning on the support around you um, knowing that you really can’t do this by yourself. It takes a village. So yeah, I have a lot of resilience and, and I think it just makes me appreciate the little things too. And super grateful that I can go on walks with my son and things might change in the future and just learning to be present and then adjusting as things change is really important. But I’m not saying that I’m perfect at this because it’s a challenge every day. You know, I have to make those decisions. So, yeah.

[(22:08)] Stephanie: But that is a superpower, right?

[(22:10)] Emily: Mm-hmm.

[(22:11)] Stephanie: And I feel like for a lot of young women who maybe haven’t faced chronic health challenges, it’s the first time in their lives they’ve had to realize those things. And I think so much of these conversations when we talk about pregnancy and MS, we focus on the fear and the what could go wrong and will I be too fatigued or in too much pain or will my symptoms keep me from being a good parent. But I always push back and I say, “All of the things you’ve overcome make you a better parent, right? And, and make you better able to help your child navigate those things and- and set you up, even though yes, the sleep deprivation and the hormones and the relapse, like, those are all added complexities that absolutely impact how you feel and your quality of life with MS”. But you have this toolkit that a lot of other mothers don’t have already. And how do you feel like that’s changed your experience as a parent? And knowing that you’ll never know exactly what it would be like to parent without MS, but, you know, but now that you are, how do you feel like that has changed the experience?

[(23:21)] Emily: Yeah. I think what I have done, because what I found is like a really important thing from like the beginning of my diagnosis is like, “Okay, who else is walking this journey? Who else is like steps stages ahead of me that I can like kind of lean into or reach out to, to get some wisdom and insight?” And there are so many amazing moms with MS out there. And I’m so grateful for social media because a lot of the people that I’m connected to I’ve never met in person, but I feel very connected to just because of that shared experience. And I surprisingly enough had met a, a woman who um, because I had shared about my pregnancy loss, she reached out to me. Not only did she live with MS, she’d also experienced pregnancy losses. And so, with that, like we really got to like walk with each other through that and then celebrate pregnancies and births of our babies. And um, and so, all that to say, like, I have found so much strength and hope and encouragement from reaching out to other people who are kind of like a few steps ahead of me, because I think that really helps give me some framework of like, “Okay, we can do this”. You can, you can be an awesome parent with MS even if you have physical limitations, even if you have disease progression or whatever it might look like, like you can still be an awesome parent, and you just adapt to whatever that looks like. And so, it’s just been really encouraging to um, have those moms in the trenches with me. And then those who are stages ahead of me um, to kind of guide, guide my way.

[(24:43)] Stephanie: And now you are one of those women that’s in the stage and uh, and walking the path that some of our listeners might not yet be embarking on or who might be where you were at a few years ago. What would you say to them if they’re unsure whether having a family is possible for them?

[(25:03)] Emily: Yeah. I always tell people who are either newly diagnosed or who are just walking through their diagnosis, like, “Don’t- don’t let MS stop you from pursuing your dreams and your goals. And if being a parent is a dream of yours, like don’t let this diagnosis prevent you from fulfilling that dream”. Like it is possible. Work with your doctors on timing and what that can look like. And- and despite, like I said, having MS, like you can be an awesome parent. And so lean on your support system is what I would say, um, whoever that might be, and don’t be afraid to ask for help. Um, and then find others who have shared experience to know that you’re not alone on this journey and that you are doing an amazing job, you know? So, yeah.

[(25:46)] Stephanie: You can make your own support system. I think that was a really important point that you made, right? Is you have, I mean, you move a lot. You don’t always have family where you are. But I think one of the most important things that people listening can do is, you know, if you don’t have that community now, you can absolutely go and make it.

[(26:04)] Emily: Yeah. Oh, yeah. There’s so many opportunities to connect. You know, I have, luckily, now, now that we’re retired from the military, we live close to my family, but they’re busy. You know, my mom’s still- my parents are still working, and my sister has three kids of her own. So, it’s also like, “Okay, I need to connect with other moms who are in the local community”. And there’s just so many other ways that support can look, not just family, but it definitely takes a village. So, find them and lean on them.

[(26:33)] Stephanie: Yeah, yeah. But it’s absolutely something that people with MS can do, right? The right planning, the right support, the right care team, but it is definitely doable.

[(26:43)] Emily: For sure. Yeah, so… Mm-hmm.

[(26:46)] Stephanie: Thank you for being so incredibly honest and open as you always are. I know people listening are gonna wanna find you on social media. We will put a link to Keep Moving with Emily in the description of this podcast, and I can’t wait to see the impact that you will continue to have on other people living with MS.

[(27:07)] Emily: Yeah, yeah. Because my channel, it not only has stuff for people, you know, living with MS, but I also had pregnancy stuff too to help you keep moving in whatever way you can. My motto is, no matter what your limitation, you can keep moving. So yeah, go check it out.

[(27:20)] Stephanie: You’re amazing. You’re wonderful. Thank you for talking with us today.

[(27:24)] Emily: Awesome. Thank you so much for having me.

[(27:26)] Stephanie: Thank you for listening to this episode of the Can Do MS podcast. If you liked this episode, please leave us a rating and review on Apple Podcasts or Spotify. We really appreciate your feedback. We’d also like to thank all of our generous sponsors for their support of this episode of the Can Do MS podcast. Until next time, be well and have a great day.

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