Natalie explains to her young sons that mommy’s liver works a little differently

Natalie learned of her PSC diagnosis when her sons were very young. She had been pursuing the “perfect” stay-at-home-mom life and soon discovered that when mother is your central role, PSC will definitely affect how you parent. She shares how she has talked to her sons about PSC and how her family has grown in not only understanding her disease but becoming very active in the larger PSC community.

Transcript

Natalie  00:00 You know, you're handed this ticking time bomb that you don't know when it's going to go off, or at least that's how it feels.

PSC Mami- Monika  00:16 Welcome to PSC Mami where we share stories at the intersection of PSC and Parenthood. PSC or primary sclerosing cholangitis is an autoimmune disease, which affects the liver. All stories and information shared on PSC Mami, are personal experiences and should not be used as the basis to treat yourself or others.

PSC Mami- Monika  00:40 Today, you're going to hear from Natalie. Natalie had two little ones at home when she sat in the doctor's office and learned that she had PSC. So you'll hear today how she thought through not only what that meant for her in her life as a mother, but also eventually how she shared the news with her boys. How she engaged her community and family, how she addressed mommy perfectionism, and stress and illness, and all the things that a lot of mothers deal with. And really how it affected her vision and perspective on her future, her future with her family and what that meant for the time that she has with them now. Natalie lives in Dallas with her husband and two children.

PSC Mami- Monika  01:30 Natalie, can you tell me a little bit about your PSC story?

Natalie  01:36 I think about my PSC story starts about five years ago, October 2012. And I was, and still am, a stay-at-home mom of two boys. My youngest Charlie was turning three, and I was doing the mom thing where you over plan and make it perfect and or at least attempt to make it perfect. And we were having a his birthday party at our house. I was doing things like planting flowers, and we were gonna have a bounce house and I was cleaning everything. Because God forbid someone saw a dirty spot in my house and judged me for it. And so and that's, that's not an irrelevant point. I feel like I had been kind of an overly stressed mom and with some anxiety, least mild anxiety. So I feel like that's kind of a relevant point leading me up to eventually being diagnosed, but I was in the front yard, planting some flowers. And I just I had been feeling off for a while. But again, just you know, being kind of a young mom was ignoring my own issues to focus on my children and I had ignored some GI stuff. I'd had GI stuff on and off my whole life kind of starting in high school and throughout college and nothing that had ever been diagnosed or that I'd ever gone to a doctor to have diagnosed. But there have been some other things just little twinges here and there that I was hoovered, they were getting harder to ignore, but I'm planting the flowers in the front yard, I'm starting to feel really lightheaded and dizzy and nauseous and it wasn't something I could ignore. And I went inside and sat down I felt like what is this, like, this is just this is getting a little ridiculous. But you know, we throw the birthday party and I know, the week after you know I started doing what you do Google things and I'd had these heart palpitations too. So I'm thinking it's my heart like what's going on. I've taken like a self blood pressure thing at the grocery store and it was elevated. And I think I gave myself an anxiety attack, just worrying about what that was about.

Natalie  03:40 And finally went to just a little local clinic I at the time didn't even have a general practitioner, I kind of used my OB-GYN as my general practitioner. So I just went to a little doc in the box. And I said, you know I'm having these issues and I'm worried about my blood pressure. So they take that. They take labs, they do an EKG and and yes, my blood pressure is elevated and you know, my EKG they send off to this cardiologist and like, Look, we're going to, we've got this relationship with this cardiologist who reads our charts, we're going to send you there. So I go home, and the labs come in, and they're like, well, you know, we want you to see this cardiologist, but these labs are a little elevated, and it's these liver enzymes. And at the time, I mean, I didn't even know a liver enzymes. I don't know anything. I'm like okay, but you know, what about my heart. So I go see this cardiologist and it was interesting experience. He didn't seem to be super helpful. And I eventually went back to the doc in the box was that they wanted me to take a second round of labs and sure enough, the enzymes continued to go up and I'm still just thinking it's my heart. I'm still having these heart palpitations stuff. And my blood pressure continues to be high and then I go back to this doc in the box. I just don't remember this doctor, and you know say what you will about some of those little clinics, but I will forever be grateful to this woman because I'm laying there and she's kind of, you know, palpating my liver area. And I guess I don't know if I cringe or wet but she says does that hurt? And I was like, well, it always hurts. She was like, yeah, that's not supposed to always hurt. So I started paying a little bit more attention to that piece. She said, I want you to see GI. And I had this friend who I knew had some kind of liver disorder. And so I knew that I should ask her who her doctor was. And she'd been kind of private with what she had. I finally just we'd gotten close to my friends. I asked her and she's like, Oh, I had this really rare thing. It's called primary sclerosing cholangitis. I mean, it's extremely rare. And being me, I went home and googled it and was just like, Oh my gosh, I can't believe my friend is dealing with this. I had no idea you know, she's gonna get really sick, she's gonna get transplant.

Natalie  05:52 And throughout the course of going through these other terrible doctors, one cardiologist who is actually, you know, a good cardiologist and did a stress test and all that came up clear, and no, it's not your heart follow up with this GI stuff, okay. Okay. Sent up to this neurologist who was a friend of the terrible cardiologist, and he diagnosed me with with caffeine addiction, and generalized anxiety disorder. I am a clinical social worker. But I was before I became a stay-at-home mom and I knew that I didn't have generalized anxiety disorder. I knew that he had not done what he was supposed to do to diagnose me with that. But it was just a terrible experience. It was just doctor after doctor not knowing what was going on. And feeling really frustrated, and finally making it to this GI and doing more labs and her thinking it was maybe autoimmune hepatitis, and wants me to get a biopsy. And I'm talking to my friend who has this liver disorders like, don't worry, you don't have what I have. It's really rare. It's going to be okay.

Natalie  06:55 Well, biopsy says it's not autoimmune hepatitis. And she's going to send me to the hepatology friend, and we go there. And she walks in. And I can say that she no longer practices in Dallas, I can say, I know, she's a very good surgeon. She walked in and looked at me like with almost an excited face and said, I know what you have. And I was like, okay, and she said, You have something called primary sclerosing cholangitis. I look over at my husband. I was like, that's what Christina has, who is my friend. And I told him, I told him what I had learned how terrified I was for my friend. And so we just sit there. And this doctor who I'll give her the benefit of the doubt, I hope she wasn't excited because she had this rare disease patient in her office, but she sure seemed it and she was spewing all these things and all this stuff that some of us are told, which is, you know, you have five to 10 years before you're going to get really sick and need a transplant.

Natalie  07:55 It was a bad day. That was a bad day. Ever since then, I mean, that's been almost five years. It'll be five years, February 4, I think. I have been lucky enough since then to be in a very early stage. You know, to prove that, of course, that original timeframe she had for me, seems to be wrong, and I hope it continues to be wrong. And of course, it's wrong for a lot of people with PSC, but it's been a heavy thing too. Even with being pretty healthy with it and labs being normal and you know, MRIs looking good. And being told that hopefully I'm one of those that that might have a longer story that might have a longer time before getting sick. It's, It's hard to believe. But where my story is right now is I think this is the first year I'm starting to, to at least try to believe it and not just worry all the time. But it's hard. It's hard when you're, when you're a mom, I think not to worry and not to project into the future. What your children's future will be like not even my own future what my children's future will be like?

Natalie  07:55 And of course, in my mind, I'm adding those years to my children's current ages, which at the time are three and five, okay, 13 and 15. They'll be teenagers, what's happening? I'm going to be a sick mom. And she says, I know what you're thinking. In my head I am like, how could you possibly know what we're thinking? I don't know what I'm thinking. Just like you're thinking, "Should you get on the transplant list?" No, that's, that's not what I'm thinking. I don't even know to think that. No, I have. I, you know, like, that's not it. But now I'm freaked out like, Well, you know, it doesn't help you to get on any sooner you have to get sick before we put you on. I am like, great. So we go down, and we sit in the car, and we just both, you know, start crying. And my poor husband had to leave that day, he had work and had to go out of town. And of course, he felt awful. But it almost was nice, because I needed to process it on my own and was with my children. And I was exhausted, you know, mentally, emotionally, physically, but just was able to process it.

PSC Mami- Monika  10:12 Can you describe for you, what was your vision of motherhood before you were diagnosed?

Natalie  10:18 Yeah, I think I just, you know, being present, I think my, my vision of motherhood was such that, you know, I'd chosen I was lucky enough to choose to stay home, it's what I'd always wanted to do. And it was a vision of health and, you know, excitement and adventure and travel and not missing a single thing important thing in my children's lives. That gets really blown apart, you know, you're handed this ticking time bomb that you don't know when it's going to go off. At least that's how it feels. And it definitely shifts your view of just expecting to be around, you know, you just, of course you expect to be I mean, anything can happen anytime, but you just expect you're going to be with your children, and you're gonna expect to go to all the games and be there for the graduations and be there for the marriages in that the grandchildren. And it's hard not to have that shift in your mind when you're handed something like this.

PSC Mami- Monika  11:23 And how do you think that's different than, you know, I'm sure you've had as I've had people say, well, anybody can get hit by a bus? How do you think that it is different than right? The everyday reality of something could happen to anyone?

Natalie  11:40 Because people don't think about being hit by a bus every day of your life. You know, I mean, even I said that out loud. And yet sometimes like, you know, it's just so different. It's just, I think about and I'm one of the luckier healthier ones, I think about my liver disease every day of my life. And I try not to, I don't know if having children exacerbates that or not. Because, you know, my children were around when I was diagnosed, but I feel like I have a vision of what is most likely to happen to me if and when I get sick. And I think PSC specifically, you know, I'm never going to compare PSC to any other disease. I've never had any other disease, and it's apples and oranges, but you're just, you know, when I came home after diagnosis, and I still feel this way, you're just like, well, good luck. I guess we'll see you when you get sick. You know, there's no, there's nothing you can do about it. There's no I'm not giving any medicine I'm you know, which I'm thankful for. But my levels of have evened out. And so, I'm not even I'm not, I'm doing nothing, there's nothing that they they're not like, okay, you're going to start this program, we can tell you what it's gonna look like, we're really gonna fight this.

Natalie  13:04 It's just like, Well, good luck. And come get checked out, you know, once a year and get your labs drawn, but there's, you just kind of have to wait. And that is, that's hard to describe, I think to people who don't experience it, just what that feels like. And that you you do think about it. As much as you try not to think about it, you know, I really feel like my my journey has been such that I've really tried to balance not ignoring it. Because when I get into that space too much, I don't keep myself as healthy I'm a relatively healthy person as it is but you know, if you if you pretend like you don't have this chronic illness then it's like hey, you know, whatever, let's just live life. Let's do it. Let's not worry about it. Let's, you know, work ourselves to the bone and do the things that I want to do and volunteer and get ourselves all stressed out.

Natalie  14:00 Well, I saw what that did to me and I really feel like stress played a part in at least when I started getting sick when I'm before I was diagnosed. I certainly didn't give myself PSC was stressed, but I think it played a part. So they're like, Oh, Oh, right. Oh, I need to I need to make sure that I am taking breaks and I'm you know, not getting myself over stressed and I'm relaxing when I can and I'm eating what I should and I'm drinking what I should and I'm you know, but it's a balance. It's a balance of, you know, keeping yourself engaged and distracted enough that you're not focusing on it all the time, but not too distracted because then you get overworked and then you're you know making yourself sick. So it's hard. It's I found it to be hard. This is a first year I feel like I'm kind of figuring it out. And that I'm the first year really believing my doctors when they say that I'm doing okay because that was hard to believe to I didn't want the other shoe to drop and not be prepared for it. Like the doctors were like, you know, I really think you're doing well, you're, you're still, you know, your scans are still really looking pretty good. And I really think this is going to be a, you know, a marathon for you and not a sprint. Like, okay, great. That's great to hear. But you know what? PSC is still so largely unknown, and you still don't even know why people have PSC. So I don't really believe you, even though you're this wonderful doctor. This is the first year I'm allowing myself to try to believe it. For at least my own sanity, I guess.

PSC Mami- Monika  15:28 Do you think you know haven't given this and how much you think about it, do you feel that your diagnosis affected your parenting style?

Natalie  15:38 You know, I don't know. Part of me would like to think oh, my gosh, I just live in the moment. I'm, you know, I treasure my precious snowflakes. And I just I don't know if I've been that good about that part of it. Of course I do. Over the years, as I've seen that I've not gone back to that place where I was before, because I almost think that PSC to some degree, for me was a gift. When it comes to being overstressed and over anxious, I started to take things more, have a better perspective, and take things more with a grain of salt and not be so worried about the dirt in the corner that the friends might see. So that has shifted. I mean, I think everything I do, is played out in motherhood because I am a mother. And because that is the largest role that I think that I play in my life. I also know what I can do; I know what I can fight through. You know, I know that when I'm tired, but I know that it, I guess I can tell that when I'm just tired, versus when I really need to take a break. And I think I've maybe shown some resilience to my boys and we don't talk to them; it's not like I tell them every time I'm feeling off or whatever with PSC. They know that I have PSC. Yeah, I don't know, I guess because the future is unknown. I might be more willing to do things that I might have otherwise just said, I feel like it today you're feeling a little tired. Like, you know what, I can do this, I'm feeling well enough to do this, which kind of goes against what I said before about taking breaks, but I don't know, I'm learning how to tell the difference. You know, I'm learning how to tell when I really need it. And when this is worth it to me, this will be worth it to me in the future that I did this and that I didn't just say, you know what, I need to relax right now.

PSC Mami- Monika  17:27 And you mentioned that your boys know you have PSC what was that conversation or conversations? Like how did that come to be?

Natalie  17:35 Yeah, it's kind of evolved over the years, of course, I mean, like I said, my, my youngest was three. So I don't know that we really told him anything. But my older one was almost six when I was officially diagnosed. And he's, uh, you know, he's a bright guy, and he likes to read books. And we had this kind of anatomy body book. Because he was, he was older and he was in school, I was much more focused on him and how he was going to process it. Because in my mind, you know, like, the doctor said, I had this very limited amount of time. I didn't ever want him to feel afraid. I didn't want him to go to school and maybe I got sick of going to the hospital and, and the teachers didn't know I mean, I felt like for him I was really preparing his way for understanding and not being scared.

Natalie  18:22 So for him I talked to him about mommy's liver works a little differently, it's how I've always said it, that my way my liver is just, it's different, you know, there's the, here are  these processes that you know, this is what your liver does, it has all these jobs. And mine, you know, has this little blockages and so it makes some of these things harder, and sometimes makes me feel a little tired or a little sick or sometimes it hurts a little bit. But that's why I go to the doctor and I again with him I was so freaked out because of the timeframe I've been given that... I'll never forget I went to his, his first grade teacher at the time who actually ended up having as a first grade teacher for our, our younger one too and she's sweet as can be but I was being really private with my diagnosis, I guess because I didn't look sick and because there was nothing I was going to be doing as far as treatment. I was just being really private. And so I just kind of told her very cryptically like I just you know I've got this liver thing and I just want you to know because in case I go into the hospital if you know if any of this affects James or he has his grandparents staying with him I just I want you to understand what might be going on so that he can be well cared for. And I think this was maybe even via email which was part of the problem but I never heard back from her and I swear to this day this woman problem I feel like she thinks I'm an alcoholic and she probably doesn't like that's what people think when you say they've got a problem with my liver and some like she must think that I am crazy and of course she's seen me around school now and I've seen fine. That's that's sort of how we we dealt with with telling James, the older boy, and just over the years that's evolved.

Natalie  20:04 And I do go, I go to the Mayo Clinic every year. So that is a trip that my husband and I take one more, little more away from them, and they have their grandparents staying with them. And I can't remember exactly when we told Charlie the younger one, but it's just always been, you know, mommy's liver works differently. And over the years, and my husband is now on the board for PSC Partners, Seeking a Cure. They know that, you know, Daddy goes and helps because they want to help the people who have this, you know, this liver that works differently, this liver, liver disease, and we've never made it scary. You know, we've never told them some of the stories that might frighten them. But they have an understanding that, you know, sometimes a mommy feel sick or tired that that's what that is. And we just kind of incorporated it into our lives, especially with Wes, my husband being on the board. It's just kind of they know what PSC is, my older one knows what PSC Partners is. And yeah, so hope I'm hoping that that makes it less scary if I ever do, you know, get sick and need to go into the hospital and just say, Well, this is you know, mommy's livers acting up, but we're going to take care of it. And hopefully that makes it less scary. I don't know. Thanks. I've been lucky that we haven't had to test that out yet.

Natalie  21:14 And if they had any questions, what kind of questions do they ask you?

PSC Mami- Monika  21:18 You know, interestingly, enough, they haven't. And I don't know if that's just their age. And, you know, thankfully, they're sort of self absorbed, self absorbed at this at these ages. And they just are like, okay, and they go along with life. Or if there's, you know, we've tried to really let them talk like, do you have any questions you have any fears? That maybe it's a little bit of fear that they don't want to know? So the little one, Charlie asks, just, like, what do we do when we go they ask, I guess they do ask about, like, the procedures that I have more than the disease itself, I'm like, well, I go in this, this big tube, and you make it sound really exciting, I go on this big tube, and I can't move and if my nose itches, I have to just suffer through. And so you know, I don't make any of it too scary. You know, and I, I get my, you know, my labs drawn, I just tell them, you know, I try to, I try to prepare them for the times in their life, when they'll have to do you know, get their labs drawn, or have some kind of test if they bump their head or whatever. So I try to tell them about it and make sure they know that it's okay, you know, doesn't hurt or if it hurts, it's not a big deal, and just hurts for a second. So I do talk to them about those kinds of things. And of course, you know, Charlie especially thinks the MRI sounds pretty awesome, but so I tell them, it's not. It's actually not awesome.

PSC Mami- Monika  22:41 And you mentioned grandparents, what kind of supports, or have you needed supports, as you've parented with PSC that might have been a little bit different than you would have had without PSC?

Natalie  22:55 Yeah, you know, I mean, that's another. I don't know if gift is the right word, that positive thing that has come from PSC, which is that I am not normally good at asking for help. And it took a while. And it took a while to trust people to tell them about this, we sort of tested out in the beginning, telling a few friends. And again, I didn't look sick, it was this thing nobody had heard of it's, you know, it's your liver. Nobody really knows what that does. And so it took a while to really trust leaning on people, for me anyway. And we'd had a few kind of, I don't know if the words the negative experiences, but you know, the things that some of us hear, which are, Oh, have you tried this? Oh, well, I did have one, well meaning neighbors say, well, at least it isn't your heart, like well, you kind of need both. So you get kind of shied away from leaning on people too much. If you feel like maybe it's not, you're not going to be validated.

Natalie  23:49 But we have since we've really allowed people to help us and particularly since we go up to Mayo, and we need our it's my, my husband's dad and stepmom that they live pretty close by, they come and say and through that they've really seen you know what PSC is and they've started to really understand you know, that it is serious. And then the same with my my parents and my husband's mom and stepdad who live. They live about five hours away. But they've started participating in the conferences, they now have roles in the conferences, the PSC conferences, and they started donating, they own a small business and they started matching donations and sending those into PC Partners. And it took it took them a while to you know, it just took everyone a while to really get what this was and it took me a while like I said to open up about it. But now the support has been really such a huge gift and a huge gift to just feel like I can talk about it because I would just keep it to myself and think well nobody really understands I don't look sick and now they've really, they've cared enough to learn. And now they know that, yeah, she might look okay, but she's probably feeling pretty tired right now, after this giant Christmas extravaganza we just had or, you know, whatever the case may be, and my support. My husband is, I can't say enough about him and about how again, maybe PSC has shifted. We've always had a great relationship that I think shifted how he views his role as husband, and he's not had to be caretaker per se. You know, he, he takes on that role when we're up at Mayo, and I'm getting my my tests done and stuff. But he has joined the PSC Partners Seeking a Cure to feel like it's he really feels like it's at least something he can do, because there's otherwise nothing that he could do to help me that feels like love. That he has joined them and just wants to find a cure, you know, and not just for me, but for this community for the people he's got to know.

PSC Mami- Monika  26:01 And how do you at this moment in time, because obviously, it shifts? How do you view your future?

Natalie  26:09 Yeah, that one. It does shift and I feel like it shifts unexpectedly. Because for a while it was fear. And that whole, I'm going to be a sick mom, what if I'm a sick mom? What if you know? What if I can't go to these games? What if I will be what if I'm getting a transplant when my you know when one of them is getting married or having a child? So there's been a lot of fear and a lot of unknown grief surrounding that. And again, it's been, it's taken a while, it's been a process for me to try to just focus on how I'm feeling now and try to trust the doctors when they say that they think I'll feel well for maybe a while longer. But I don't know, I think I try not to think about it. But I think that that, for me that that's healthy, because I was overthinking about it. I don't know. You know, I mean, that's another difficulty with this disease, I just don't know what it's going to look like. And because of that we try to do a lot right now. We take a lot of trips, we really love to travel. And we like to take the boys places and be really active, we like being outside. So we just try to do all of that now and try to not make any assumptions good or bad about the future. Definitely have a shifted view of, of not having assumptions. I guess that's what it is, I think you just... most people who don't have a chronic illness, just you just assume, you assume you're going to be around and you can start making these plans or having these daydreams about what that might look like, I still have those, but there's just a little there's a little cloud over them, maybe, you know,

PSC Mami- Monika  28:14 And what do you,  what would you or do you, when do you meet moms with young kids who've been diagnosed with PSC, what do you tell them?

Natalie  28:24 You know, there aren't a lot of us out there. So I don't meet them very regularly. But I would say at the conferences that I've attended, and there have definitely been women in there who either have young children are considering having children. I'm so thankful regardless of the things that I have to worry about, because I have children. And yes, that is different. You do have different concerns. But I would never I would never change it.

PSC Mami- Monika  28:53 Do you have any advice for moms with young kids? In those moments where you just that fear takes over you? Your little ones or at home? You're having those visions of future? How do you sort of get past those moments of fear?

Natalie  29:07 It's hard. I mean, it's easier said than done. But I would say live as much in the moment as you can. And children tend to make that a little bit easier. You know, it's it's a hard job. And there are plenty of things to keep you busy and keep you distracted from thinking about PSC too much, that said, it's taken me five years to do, to just try to find the balance and to remind yourself even if you are like me, and you are. you know, you're not in and out of the hospital all the time and you're you're feeling healthy a lot of the time to just not compare yourself to other mothers. Regardless of where you are in your stage of PSC that's been a hard thing for me to do and I would, you know, everyone's dealing with something, but try not to compare yourself with others who are trying to who are doing it all. Remind yourself, that it's okay. If you take a nap, it's okay. If you aren't up for going to the moms night out, it's okay. If you do it differently, try to give yourself a little grace. And as far as the fear is concerned, that's a hard one. It's it's hard because it's hard not to be afraid. It's hard not to put everything in with the lens of being a mother and thinking what I thought, which is, what if I'm a sick mom? What if? What if, what if, I guess the what ifs were detrimental for me, in my opinion.

Natalie  30:32 Being as honest as you can with your children, of course, depending upon their age, I think takes away some of their fear. My husband just told me the other night, we were kind of discussing some of this stuff. He's like, you know, if it were me, he's like, I'm so thankful that you thought to tell the tell the kids, to tell James something, because if it were me, I would have just pretended like it wasn't happening. I would just say, Oh, mom and I are going on a trip, you know, no, we're not going to the Mayo Clinic to get an MRI, we're just going on a trip and they don't need to know anything. And he's really glad because he really thinks that that could have created some fear in them or some confusion, or maybe some distance if nothing else between the kids. And if they didn't know something huge that I was going through. I guess that's what I would say. Although it's so hard to give advice. I mean, everybody's so different. You know, I mean, ever it's just it's, it's just crazy. PSC is just, yeah. Yes, PSC is just yeah. Not much else to say.

PSC Mami- Monika  31:37 Do you feel their strengths that you've identified for yourself in your parenting and your life since you've been diagnosed?

Natalie  31:46 I would say, putting things into perspective. PSC really gifted me with that, and I'm not great at it every day, I still have the things that are done that I worry about. But I honestly think, and this is so strange to say, I think I'm much less anxious person since being diagnosed with PSC. I think it's because I was worried about all the wrong things. And now it's like, oh, yeah, this is real life. And I don't need to worry so much about those small things. And I think that's been a, you know, it's been a good thing for me. And a good thing therefore for my kids. I feel like this is such a contradiction, like, like what I said earlier, but I just think I know when I should rest and when I can fight through. And because I know when I can fight through, I do the things that I want to do as a parent, and it makes me a happier mom. Because I, I want to be there for as much as I can. And that was true before I was diagnosed, but now I see it through a different light.

PSC Mami- Monika  32:53 And is there anything that I haven't asked about that you wanted to share coming up was on your mind or has come up for you? While we've talked?

Natalie  33:02 I would say that one thing that I know that I deal with in that maybe just saying that I deal with it might help someone else feel normal is that I worry that I'm whether or not I'm normal? You know, I worry like, when I'm feeling really exhausted. I think I hope it is this just being a mom. Like it feels different. I think oftentimes the PSC exhaustion feels very different. But I just it's another part of the puzzle of like, I feel like for me, PSC is this little puzzle, it's this, trying to balance the rest enough, don't rest too much. Distract yourself, but don't ignore your disease. Be healthy, but don't freak out so much about it, that you're not enjoying your life. That's a hard piece because it's hard to find someone else to talk to you about that. Have you feel guilty when you when you relax, like do you feel like you're you're just being lazy? Or I really feel like I need a break. But you know, these other moms aren't necessarily taking these breaks? And or do you feel guilty when you maybe have two glasses of wine? And people have told you only to have one or and some doctors say to have none? I mean, do you feel guilty but you know, these doctors are saying I look pretty good. So I just I don't know if I have answers to those questions, but I feel like those are normal questions to ask. And it's, again, when you're looking at parenthood, where you are a mother, all of that is balanced against, yes but if I'm not taking care of myself, then I feel guilty because it's, I'm their only mother and if I'm not healthy, then what does that say about how much I care about them. I think everything is balanced against the fact that you have these children and that makes it challenging. But all I can say is I feel that way too. I don't have the answer, but I feel that we do. But I'm so thankful to be a mother, even if it makes it more challenging to deal with PSC.

PSC Mami- Monika  35:11 Thank you so much, Natalie. I appreciate your honesty and sharing and thinking or helping others think about their little ones.

 PSC Mami- Monika  35:21 Yeah, it's my pleasure. Thanks for having me.

PSC Mami- Monika  35:26 Gracias Mamis for listening. I'm sorry you're here. But I'm so glad you found us. If you haven't visited our web page yet, you can find all the episodes of PSC Mami podcast, and resources such as a growing list of health professionals that have seen our interviewees, including OBs who've even heard of PSC, which those of us in the rare disease community know it can be a challenge just to find someone that has heard let alone knows how to treat someone with your condition. There's also an invitation to share your story on the website and we would love to hear from you. That website is pscmami.com