Family Planning, Pregnancy, and Parenting with Rheumatoid Arthritis: Claire’s Story (Part 1)

You know, you have a small daughter who’s 17 months old and What were your experiences having rheumatoid arthritis and, you know, family planning, Pregnancy…yeah. Yeah, it was a really long journey that actually formally started with, and I’m gonna do my little plug here, with this lovely book by Suze Edward Mays. She’s an Australian, so I don’t know if American audiences are gonna even recognize this book, but it’s called, “Arthritis, Pregnancy and the Path to Parenthood” and I ordered it directly from the author gosh, like five years ago, so well before we were ever really trying to conceive. And I could not get through a single chapter without bawling my eyes out, because it spoke directly to so much of the emotional journey that the path to parenthood as someone with arthritis um, is, er and was for me, with a lot of it just being a lot of fear and self-doubt about, this is a genetic condition. Am I even making a responsible choice by wanting to have a biological child? What is gonna happen to my body during? What is gonna happen to my body immediately after? Am I going to be able to physically parent my child? Like these huge unknowns. Um, and and what that does to your psyche as someone you know who’s once you know, you get pregnant very hormonal. Gosh, yeah. You’re pregnant, prednisone… I was really emotional on prednisone, this is the the best day ever, this is the worst day ever. Yeah, so it was, um it was a very intentional decision when we we decided to try to conceive because of all these considerations that both my husband and I had been through these questions together about like what will happen if this what will happen if that. Pregnancy itself was blissful after I got through my first trimester where I was weaning off medications, that, that was awful, but once my immune system decided to cooperate it was heaven on earth. Being pregnant was amazing and, and from an emotional perspective for me, as someone who had been combating my body for nearly a decade, to have that, my like, faith in my own physical self restored that, like, you know what? (I felt the same) I am, yeah, I am not broken. Look at me! I’m big! And bringing a human into the world like it was so empowering for me. Even just getting pregnant, for me, we got pregnant on the first try and I was like what? Yeah, my body doesn’t usually cooperate like I was honestly, that was my first thought, was like, that’s not right, that that’s not right because this is gonna be, have to be a struggle, look, it HAS to be because everything else has been a struggle. Yeah. Yeah. Yeah, so just watching your body work is so powerful. Yeah, but I took nothing for granted either because I was always waiting for the other shoe to drop, and so I was very deliberate in laying out our birth plan as far as where I wanted to be physically and who would be with us. So I found an amazing Midwife and birth center located really nearby our home, A doula to work with us during labor who was aware of my physical limitations, and could help me make specific modifications to different birthing positions that I like might not be able to do physically, like, So it was, it was, and it went perfectly. And my symptoms didn’t return for at least I think it was four months after she was born. And they they came back on Slowly so that was good. I was you know Ready for a you know, hitting, being hit by a Mack truck, but that, that never happened. It was, it was a slow return of my symptoms, and, it’s been really great to work with my rheumatologist to continue to treat my RA while still achieving my goals for breastfeeding and and planning future pregnancies. So, was that hard with medications? I’ve heard that there’s a lot of confusion around which medications you can be on while breastfeeding. We were able to talk about Cinzia, which is what I’m what I’m on now and what the research shows, relative to the size of the molecule and, and how it might be passed through breast milk, and digested, and we feel comfortable continuing and we I’ve shared this information of course with Edie’s pediatrician and so everybody is in on it and everybody is okay with it, agreeing that any risks, which there are none that we can point to but are far outweighed by the benefits. The physical challenges now as she gets older are increasing. So, we’re working on that a bit, but what’s great as she gets heavier and more wily she also understands language more and can be counted on to cooperate a bit. I was gonna say I remember 18 months being about the peak of the difficulty for me in terms of that, like, there they don’t quite have any self control yet and the language is still emerging, so, but by 24 months they oftentimes can follow directions Yeah Not always, there’s definitely not an always with a toddler but, but yeah, so we’re right in that transition where she is too big for me to physically force her to do anything. She’s stronger than me in a lot of ways but she, she understands, I think to some extent that she needs to help me with certain things like, I mean, of course not like deeply understanding that, but you know, she, for example when changing her diaper now, she understands the routine that she’s gonna come lay down in front of me on the floor. Like I don’t even ask her. Yeah, if she sees me sit down with the diaper she shuffles over and lays down. So do you I’m like do you ever struggle with fears about the future like as she’s getting a bigger, or are you more like living in the moment? Because that was one of my hard things, like I’d be like, what am I gonna do when this happens, and what am I gonna do…Yeah, I those are the thoughts that come when you’re lying in bed at night. Yeah. Yeah, and they definitely do, but I’m trying not to focus on them as much because, every sign that I have right now is pointing towards those fears not coming to pass because she is such a dear soul right now, so sweet, so she will be forever, and she will never be a teenager and yeah. She will be, you know a blissful a child her whole life. Yeah Well my therapist helped me a lot with that ’cause, she she helped show me that like I have all this energy d evoted to all these future worries but like in the reality only one of those is even gonna happen and it’s probably not even the one that like I’m thinking about, it’s a lot of wasted, yeah energy. Anything else you want to share with maybe audience members, all my audience members that don’t exist currently (laughs), but about, you know, advice for people who might be on the fence about whether or not to have a child or people who are pregnant who are like, oh my gosh, people with rheumatoid arthritis, who are like, what’s about to happen? Yeah, I mean I would love to say you know, it’s all gonna be fine right because but you can’t, and I don’t think being Pollyanna about it helps anybody. But what I can say is whatever it is, you can get through it. Mm-hmm and it rarely is as bad as you think it’s gonna be, and it’ll be, the the things that are bad will be different than things (totally) than you thought. So yeah, don’t spend time worrying about the future. Relish in the moment you have now and Yeah don’t let fear guide your decision-making. If if you have medical reasons that you can’t pursue having a biological child there’s all sorts of alternatives, ways to have a family or and not having a family is perfectly fine, too. I know a lot of peopl, there’s a societal or family pressure that a successful adult life looks one way, but it doesn’t and just so, that’s what I would say to people is, you know, make sure the decisions you’re making are for your happiness, not for your fear, and not for anybody else. That’s that is so great. And you know a family, the word family, you know used to look a certain way to me. You know, I always thought it would be I’d have two kids and I would have a certain you know, and now as my my physical health is, has gone in directions, I didn’t really foresee, like I’m starting to think of family as different, you know like, that you know being an aunt is really important to me, you know, and you know, being able to take care of, obviously take care of the child I have is is super important and maybe having pets and things that I… that before, again, it doesn’t, it’s not necessarily going to look the way that I planned, but it can be, um, it could be just as good, you know long-term. umm hmm. Medical disclaimer (see video description for text).

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