Pregnancy, Postpartum and Parenting with Psoriatic Arthritis: Jamie’s Story

Jamie shares her journey getting her psoriatic arthritis diagnosis when her first child was two years old, and her experiences with pregnancy and postpartum with her second child (4 months old at the time of recording).

In this episode, Cheryl & Jamie discuss:

• Jamie’s challenging diagnosis journey
• The difference between her pre-psoriatic arthritis pregnancy and parenting experience and her experience being pregnant with psoriatic arthritis, including a discussion of medications
• The difficulties of being a young person with rheumatic disease
• The challenges of family planning with rheumatic disease: whether to have another child or not?
• What it’s like to live with anxiety along with rheumatic disease
• Balancing gratitude and grief
• Learning to overcome “mom guilt”
• Our children need us to be present not perfect

Speaker bios:

Jamie lives in Gloucestershire, England, with her husband and their two children; Harper aged 4 and Kit who is almost 5 months. She was diagnosed with psoriatic arthritis in early 2019 and is still in the process of “learning” her condition. She is a freelance writer and self proclaimed coffee addict who is passionate about combining traditional and holistic approaches to find the best combination to manage her chronic illness.

Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources. 

Episode links:

• Resources mentioned in the episode:
  • American College of Rheumatology clinical guidelines for pregnancy with rheumatic disease
  • Mamas Facing Forward – website
    • Books for children to learn about parents with a chronic illness
    • Social media accounts: Instagram  https://www.instagram.com/MamasForward/ 
  • Versus Arthritis website
  • Fooled by Randomness book
• Jamie’s Socials
  • Instagram @mama.bear.squares 
• Cheryl’s Arthritis Life freebies:
  • Free Handout: Cheryl’s Master Checklist for Managing RA
  • Free Training: Arthritis Life Hack Crash Course
• Cheryl’s Arthritis Life social media pages:
  • Cheryl on Instagram
  • Cheryl’s website: Arthritis Life
  • Cheryl’s Tiktok: @ArthritisLife 
  • Arthritis Life Facebook Page
  • Cheryl’s Twitter: @realcc 
• Cheryl’s free Facebook group: Arthritis Life Podcast, Practical Tips & Positive, Realistic Support

Medical disclaimer: All content found on the Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Here’s the show breakdown:

01:00 – Jamie’s introduction and her initial health issues: consistent pain in her fingers, spine, and neck after her first child was around two years old. 

05:00 – Jamie struggles to get treated seriously by doctors. She’s diagnosed with psoriatic arthritis after originally her doctors said she was “too young” for it. 

5:35 – She and Cheryl discuss their similar diagnosis journeys with medical gaslighting, how both of them had to have their parents advocate for them and spend money on additional doctors before they got their diagnoses. 

7:30 – Discussion of anxiety as a result of untreated / undiagnosed chronic illness. Jamie & Cheryl discuss their experiences getting therapy for anxiety and coming to terms with it.

9:45 – Jamie’s first pregnancy without psoriatic arthritis, as compared to her second pregnancy with it. Discussion about medication decisions and how difficult it was to decide whether to have another child or not.

12:08 – What was it like to be pregnant with psoriatic arthritis during COVID19 pandemic (in 2020)? Includes a discussion about the pregnancy-induced remission she experienced. 

14:30 Jamie discusses her experiences breastfeeding and difficult postpartum medication decisions. Cheryl and Jamie discuss how complicated medical decisions are in the context of a family system, not just what’s “best” for the baby. 

16:30 – Jamie discusses comfortable ways to hold the baby during breastfeeding and the ways in which aspects of the newborn process are easier due to lockdown.

18:00 – Jamie discusses her mixed feelings about using adaptive aids or gadgets in the home, as a young person with arthritis.

20:00 – Balancing gratitude and grief as a mom with a disability.

22:00 – The importance of learning how to adapt continuously, rather than seeing your chronic illness as having an “end point.” 

23:15 – How Jamie’s flare up affects her ability to parent her “big kid” (her 4 year old) and her feelings of mom guilt, complicated by the fact that she’s experienced parenting her child prior to her diagnosis.

26:10 – Cheryl and Jamie discuss how difficult it can be to decide whether to have additional children when you have a rheumatic disease, and how to spread out the space between your children. 

34:45 – Cheryl parenting mantra: “My son needs me to be present, not perfect.”

36:00 – Learning to enjoy the simple pleasures with your children.

39:00 – How Cheryl & Jamie explain their conditions to their children and how it’s helped their children develop empathy.

42:00 – Coping with feelings of “unfairness” when you get diagnosed with an autoimmune disease when you had previously been healthy and had healthy behaviors.

45:00 – Fears of passing your autoimmune condition on to your children. 

47:45 – Mamas Facing Forward – resource for moms and moms to be living with chronic illness. Includes books for children about parents that have disabilities.

50:00 – The importance of having clear expectations to your partner and delegating if possible when raising children.

55:00 – The role social media plays in Jamie & Cheryl’s lives; a blessing and a curse. It can be confusing as the diseases differ drastically between people.

58:00 – What the word “progressive” meant to Jamie when diagnosed and how that has changed over time with the modern treatment options and medication. 

1:01:00 – Cheryl’s experience when newly diagnosed, having faith in the medications.1:05:00 – The importance of considering how representative the stories that you’re looking at on social media are. When things are going well, people aren’t on the disease-specific social media groups.

Full Transcript:

[00:00:00] Cheryl: 
[Introductory note]  

Hi there! I’m so excited to welcome you to The Arthritis Life podcast where we share arthritis life stories and tips for thriving with autoimmune arthritis. My name is Cheryl Crow and I am passionate about helping people navigate real life with arthritis beyond joint pain. I’ve been living with rheumatoid arthritis for 20 years and I’m also a mom, occupational therapist, video creator, support group leader, and I created the Rheum to THRIVE self-management program. 

I am so excited to help you live a more empowered life with arthritis. We’re going to cover everything from kitchen life hacks, to navigating the healthcare system, to coping with friends who just don’t get it. Seriously, no topic is going to be off limits on this podcast. My interviewees and I share our honest stories of how chronic illness affects our lives. This includes discussions about mental health, sex, shame, pregnancy, body image, advocacy, self-acceptance, and so much more. You’ll hear stories from all ends of the spectrum from a person who’s living in medicated remission from psoriatic arthritis to somebody living with severe mobility restrictions and severe pain from rheumatoid arthritis. 

You’ll hear how people manage their conditions in different ways like medications, mindfulness, movement, social support, work accommodations, and so much more. You’ll also hear from rheumatology experts who just get it. We’ll dive deep into the science behind chronic pain and what’s the latest evidence for lifestyle changes that can help you thrive with arthritis, including exercise, sleep, nutrition, stress reduction, and more. This is your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started.     

This episode is brought to you by Rheum to THRIVE, a brand new support and membership community that I created in order to help people build a life they love despite rheumatic disease. I’ll be teaching you how to develop your own THRIVE toolkit, which is the exact process I use to live a full life despite rheumatoid arthritis. Check out the show notes to learn more. 

Hi, my name is Cheryl Crow, and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years, and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks to how to respond when people say, “You don’t look sick.” Stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness – no topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started. 

Hi, Jamie. Thank you so much for coming on the Arthritis Life podcast! 

[00:03:06] Jamie: 
Thank you so much for having me. I’m really excited to be here. 

[00:03:09] Cheryl: 
Yay. So, can you just start by telling us a little bit about yourself? Where do you live, and anything else you wanna share? 

[00:03:16] Jamie: 
So, my name is Jamie. I am 29-years-old and I live in Gloucestershire in England. I work as a freelance writer. I live with my husband. We’ve been married for nearly six years, together for eight. And we have a 4-year-old daughter called Harper, a 4-month-old son called Kit. And we also have two dogs called Dylan and Theo. 

[00:03:40] Cheryl: 
Oh, those are wonderful names. In your story, I wanna start by how did you get diagnosed?

[00:03:47] Jamie: 
So, like many people, it’s quite a longish story. In summer — I haven’t had my diagnosis too long. I’ve had it coming up for two years. But so, in summer 2018, my daughter was coming up to two. I’d never had any issues with my joints or anything like that, and suddenly all my fingers swelled and they were so painful to touch. And even just simple tasks like changing my daughter’s nappy was so difficult. So, I booked in to see my GP. And what happens with many things when you’re sick, by the time I went to my appointment, everything had gone, like all my swellings had gone, everything was back to normal again. And they just wrote it off as maybe it was one of those things, you know. They did a blood test, it came back as everything was being normal. So, I went on my way. 

Then I was fine for a couple more months. And in around November time of that year. I started to get some issues with my neck and my spine, and I was having a lot of pain in my neck, and it got worse and worse. And I went to see an osteopath; I went to see a chiropractor. Nothing was making it any better. And the issues with my fingers came back. Not as bad, but slightly. And so, I went back to my GP. And again, I was fobbed off as you’ve got a 2-year-old, maybe it’s that that, blah, blah, blah. So, I started doing my own research, and rheumatoid arthritis just kept coming up over and over again it kind of freaked me out because I think when you read about it, it can be a bit doom and gloom, can’t it? I was like, oh, gosh, I really hope it’s not this. 

Anyway, so I went back to my GP and when I put this sort of potential diagnosis in front of him. He laughed at me and said, “It’s not that. You don’t have that.” And before this point, I’d never known there was a difference between rheumatoid arthritis, osteoarthritis. I just thought arthritis was something that older people got, and it was through like wear and tear. And he again, said to me, “You are far too young to have that. So, off you go.” I know. But again, everything kept getting worse to the point where I was literally bed bound, like I couldn’t even get out of bed. 

And one morning, I had a really bad night and I’ve been throwing up all night and I genuinely couldn’t move. So, in the UK we have this helpline called 111, and you can ring it to get like medical advice. So, I phoned it and they were kind of concerned by what I was saying. So, they sent a ambulance out to me and the guy in the ambulance gave me morphine just so I could get myself back to the GP. And so, my husband took the day off. He I shuffled into the car even on morphine. I was in a lot of pain and I saw a different GP. And again, this guy just didn’t believe me. And he, when I had my daughter, I had postpartum anxiety and he brought that up as if what was going on was in my head. And even my husband was sat there like, what the heck? This is just insane. 

And at this point I start — and again, I went home and I started to get really frightened. ‘Cause I thought, everyone thinks I’m making this up. Everyone thinks this isn’t real. And what I’d read about rheumatoid arthritis, it’s progressive and if you don’t get it treated, it causes more damage. So, I just, I was getting so stressed, so anxious, and in the end my mom said, look, I will pay for you to go and see a private rheumatologist. Because obviously the healthcare system in the UK is a bit different, ’cause we have the NHS, right? So, to get in front of a rheumatologist, you usually have to be referred by your GP. 

So, my mum paid, it was an obscene amount of money. And within 10 minutes of me being with her, thank goodness she diagnosed me with psoriatic arthritis, which is really similar to rheumatoid, but it involves your skin as well. So, your immune system also attacks your skin. Yeah, so that was my diagnosis. And that was in April, 2019. And I think, like many people, when I got my diagnosis, I was like pretty devastated and also kind of relieved because when you got a diagnosis you can hopefully work towards treating it and making it more manageable. So, yeah.

[00:07:47] Cheryl: 
I didn’t know our stories were so similar down to the point where my mom also hired like a private in our country. Yeah. They, it’s called a concierge doctor here, where it’s still like a primary care, which is our version of GP. The primary care is like your gatekeeper to the rheumatologist. Everyone else still — but you can hire a concierge doctor, which will then kind of be your personal doctor for 24-hours a day. But she even then thought that I was too anxious. Like, I brought her in my — I made a symptom tracker and I was tracking like what I was eating, what I was doing, and when I was feeling the worst. 

And she was like, “You’re just hypervigilant about your health.” But then, eventually my joints got worse and then she figured out. But when you’ve had that kind of traumatizing experience, it’s just my heart goes out to you because that is, I can’t imagine. I got diagnosed when I was 20-years-old, which some people say, “Oh, it’s so hard when you’re so young.” But at the same time, if I was also having to deal with being a mom to a 2-year-old during that time, I think it would’ve been so much — anyway, you can’t compare suffering. Suffering is just hard. 

[00:08:55] Jamie: 
No, it’s hard. And I hear that from quite a few women actually, that initially they were looking more like mental health rather than physical. Yeah. And I just, it makes me really angry. 

[00:09:04] Cheryl: 
Me too. 

[00:09:05] Jamie: 
And the little feminist hat goes on. And I think, would they do the same to a man? Would they ask a man if it was in his head? I don’t know. 

[00:09:12] Cheryl: 
No. And the other thing is that I now, I have gone through therapy for some anxiety that I’ve developed over the years that some related to my health. Some just, like, I get claustrophobic, for example. So, I’ve gone through therapy for that. But, you know, what I’ve realized is that I don’t understand why the doctors don’t see anxiety as a natural consequence to living in pain, and living in not having an answer. Like, why wouldn’t you be anxious? But then, it makes sense, when you have this experience of having these physical symptoms, plus you’re anxious about them — understandably ’cause no one’s listening to you and no one’s believing you — you get in this really awkward position that’s so tenuous when you go to a doctor’s appointment and you’re like, I need them to believe me. And I am anxious about this. I need them to know that it’s like serious, but I can’t seem too anxious. ‘Cause then they’re gonna be like, “She’s just anxious.” So. 

[00:10:07] Jamie: 
Yeah. It’s really hard, isn’t it? So, my anxiety, like, really did sort of follow my diagnosis and I ended up getting a diagnosis also of generalized anxiety disorder, too. But I don’t think it would’ve happened if it wasn’t for the battle I had to get to get the right care that I needed. 

[00:10:22] Cheryl: 
So, and I’m sorry, I think I referred to you as having rheumatoid arthritis earlier, but yeah, psoriatic arthritis, which you can have psoriasis without arthritis, or you can have psoriatic arthritis, which some people get confused about. So, you have joint symptoms and skin. 

[00:10:37] Jamie: 
Yeah. So, my psoriasis flared when I was 17. But it never, I never had it bad, like, it never really bothered me. It was never an issue. I didn’t even see it as like living with an issue. ‘Cause it was, it’s always been so mild. And it’s funny ’cause one doctor that I saw amidst all of my trying to get a diagnosis, he took my entire life history and he kept, he wrote right at the top, ‘Psoriasis at 17’. And I was like, why is he writing that down? ‘Cause I also had eczema. I had eczema way worse. And I was like, why isn’t he writing down by my eczema? And it’s, ’cause at that time I didn’t know psoriatic arthritis existed, but I think it had started to spike his radar. 

It’s funny ’cause one of the GP’s is still at my practice and on the occasions I’ve seen him for different things now he’s always so nice to me and he is like completely opposite to how he treated me the first time around. And I kind of hope therefore he has learned something from it, because obviously he can see that I did go forward to get that diagnosis. And he’s actually like now very respectful. And if I say I’m thinking this might be happening, he’s like, oh, okay. And he really listens to me. So, I hope he has learned something from that experience. 

[00:11:47] Cheryl: 
A lot of times we end up going to different doctors to get our diagnosis. So, I’m glad that you’re able to still see that doctor. So, I think it’s fascinating that you had one pregnancy — so you’re four months postpartum, by the way. So, let’s give you a moment of appreciation that you’re willing to be on this podcast because this is, like, I remember every moment when my son was four months old, it was like I could be doing something productive or I could try to take a nap. So, yeah, I appreciate it. Yeah. Naps for life. Oh, my gosh. So, but so you’ve had one pregnancy before rheumatoid arthritis — or before psoriatic arthritis — and one after. So, I’m guessing a lot of people are gonna wonder what was your second pregnancy like? 

[00:12:31] Jamie: 
Obviously just the decision to have a baby was a really big one, and I’m sure many people will resonate with that. So, the first med I was put on was Sulfasalazine, and it kind of worked for me for a little bit and then it kind of didn’t work that well for me. And I don’t know what it’s like in the US. So, in the UK you have to fail on two DMARDs at least before you can be put forward for a biologic. 

[00:12:53] Cheryl: 
It’s actually similar here. 

[00:12:55] Jamie: 

Yeah. So, obviously there aren’t that many pregnancy-safe DMARDs. So, my, because, ‘we were thinking of wanting a baby, my rheumatologist was really reluctant to change my meds until we had the baby, which is obviously stressful in itself because I thought, what if it takes me years to get pregnant? Like, you don’t know, do you? But it kind of pushed us into, okay, if we wanna try for a second baby, let’s just do it. And I had all those things I think many of us have. Like, I really worried about how I’d cope with two. Obviously, I was still really new in my condition too, so I didn’t know what, I still don’t know what the future will look like for me and how much the disease will like an affect me and stuff. So, it was really tough and it, again, it probably exacerbated all the anxiety that I was already thinking ’cause I’m a massive overthinker anyway. 

But we made the decision to take the plunge. And I think this similar thing happened to you actually, ’cause I listened to some of your earlier podcasts. I fell pregnant straight away, like immediately. And really similar to what you said, I thought my body is really angry and hates me. Like, how have I got good fertile health? This is insane . I’m on all these drugs now and yeah. So, that was strange. But yeah, so I fell pregnant, so it was really frustrating that in January I started having quite a bad knee flare, and I fell pregnant in the February, and obviously the coronavirus started and the UK went into complete lockdown a month after I found out I was pregnant. 

So, my pregnancy was really crazy on many levels. My knee, for the first sort of few months of my pregnancy gave me a lot of bother. Obviously I couldn’t take many painkillers ’cause of being pregnant. And all you could really do was go for walks, which is not very easy when your knee is really swollen and painful. So, I did find it really tough the first few months, but when I got to six months pregnant, I went into remission, which was just amazing. Although at the flip side, I’d always said I didn’t wanna go into remission because I didn’t wanna be reminded of what it was like to — it’s really sad to not be in pain all the time. But I did go into remission and it was wonderful and I stayed in remission until about a week ago when everything started to rear its ugly little head again. 

So, yeah, so I had a good period of remission. The one benefit from it was that I had quite a — I wanna say traumatic, that’s a bit of a big word. I had quite a difficult c-section with my son. So, I had a cesarean section done under general anesthetic. And I guess not having my arthritis be an issue meant I could fully focus on recovering from my C-section. Although then, once my C-section recovered my arthritis was like, I’m back!

[00:15:35] Cheryl: 
Yeah. Isn’t it? It really is, like, they take — the health issues just take turns sometimes. Yeah. Well, I’m sorry that you’ve having now the symptoms are coming back, but I’m glad you were able to experience that pregnancy remission and postpartum too. I know your, the birth of your second child was just completely like a little bit scary. Is that a good word for it, or —? 

[00:16:02] Jamie: 
Yeah. So, he spent time in the NICU after he was born, like it was, yeah. It’s not the birth that anybody wants. 

[00:16:09] Cheryl: 
Yeah. I know that people might ask, want to know, are you breastfeeding? And if you are, you taking medications? That was one of the questions. 

[00:16:17] Jamie: 
I’m breastfeeding. I was on Sulfasalazine. I stayed on Sulfasalazine throughout my whole pregnancy. And I’m still on Sulfasalazine now. So, my next issue though is that because my disease wasn’t very well controlled pre-pregnancy, my rheumatologist told me it would probably come back with a bit a vengeance and I probably wouldn’t be able to stay on Sulfasalazine. And when that did happen, they’d want me to move on to Methotrexate. So, Methotrexate is obviously not pregnancy safe and it’s not breastfeeding safe. So, I’m struggling a bit with that at the moment because. 

Obviously I’m flaring, my knee is pretty angry. My fingers, everything’s a bit stiff again. And I’m thinking I probably need to go onto Methotrexate soon, but it’s definitely cutting my breastfeeding journey much shorter than I wanted. So, I breastfed my daughter till she self-weaned, and she was 14-months. And I just really hoped to do the same for Kit. It’s really tough, isn’t it? And in my head, I’m also thinking of it, both my children need to have me healthy. That’s best for everybody. But that still doesn’t really soften the blow. So, right now I’m being a bit stubborn and I’m hoping my flare might calm itself down on its own. But my rheumatologist wasn’t too hopeful that it would, just because things weren’t controlled before I went into pregnancy remission. So, we’ll see. 

[00:17:31] Cheryl: 
The decisions that you have to make around breastfeeding, it’s a good, metaphor for how difficult it can, you know, these decisions, it’s not just about is X, Y, or Z safe for the baby. It’s a complicated — it’s like a family system, right? You have another child that you need to be there for, and you have your new child and then, you know, obviously breastfeeding is the best for the nutrition of the current of the youngest child, but does that outweigh the benefit to you of being more well-controlled and more present potentially for both children and your own mental wellbeing? It’s just so complex, isn’t it? 

[00:18:12] Jamie: 
It’s really tough. I think because he’s my second born too, I feel like he should get everything my firstborn got. So, because I did it for Harper, I’m like it’s really unfair that I didn’t do it for Kit. And I’m also thinking, like, when I’m flaring, I couldn’t imagine getting up and making bottles in the middle of the night. So, like, it is easy, isn’t it, once you’ve established breastfeeding. 

[00:18:35] Cheryl: 
I was gonna ask actually, ’cause I do remember now. I only was able to breastfeed for 10 weeks. ‘Cause then I got mastitis four times, and it was terrible. I did have some pain with the positions of breastfeeding sometimes. So, have you found like a comfortable, like, what are some of the comfortable positions you’ve found? Like, how you hold him or do you do sideline or do you hold him — do you know what I mean? Like, across your body? Do you switch it up? How does that work? 

[00:19:02] Jamie: 
So, I tend to do, across my body and I use a Boppy pillow, you know, those pillow, like, a half donut? And again, that has been a benefit of the pandemic ’cause the UK, like, we’re still in lockdown, like you’re not really allowed to do anything. So, it has meant that I haven’t really had to feed him out and about like I did with my daughter, which I think in terms of my joints, it’s actually been quite beneficial. ‘Cause when I wanna feed him, I’ll go up to my bed. My husband who’s working from home, I can say, “Can you just carry him up for me?” And yeah, lays him on the donut. So, actually, it’s all right on my joints, which is good. 

[00:19:36] Cheryl: 
Oh, that’s really good. Yeah. And I can attest ’cause I did a lot of bottle feeding that those little, as my friend who’s British said, the fiddly bits, she calls them the fiddly, the little fiddly bits. Yeah. Yeah. The fiddly bits are hard. One time I didn’t squeeze it on tightly enough and I just put the bottle towards my son and the whole thing just opened up and poured onto his face and his whole body. And I was like, ah! But you will figure out alternative ways. If your thumb’s hurting, you can hold it a different way. But yeah, it’s, I think, the concept of trade-offs is something I think about a lot with living with these kind of rheumatic diseases. Like, you’re trading your comfort for something else, right?

[00:20:21] Jamie: 
It’s so hard when you’re young, I think, because I’m really stubborn. So, things like the other day I couldn’t get the, top off of the washing machine cabinet, like, the child safe lock. Because where my fingers were involved, I literally couldn’t get the top off. And my husband was sitting right next to me. He’s here, let me do it for you. And I was like, no. I just didn’t want him doing it. And it’s a real adjustment, isn’t it? And things like aids, like I’ve slowly started to accept aids into my home to help me. But I kind of feel really bitter. Every new one that comes in, I’m like, I don’t want you here.

[00:20:53] Cheryl: 
Oh, I’m so glad you’re bringing this up. ‘Cause I do think that the — I’m an occupational therapist and we are excited about these aids. Like, when we’re saying aids we’re talking about like adaptive equipment, things like a jar opener or like weird, like, I have these weird scissors. This is gonna be audio only, but I’m showing you them. But yeah, we can’t discount the fact that if you’re, you know, you’re aged 29. Even me being 39, I still consider myself kind of young, but I know I’m not that young anymore. But you don’t — you want to be able to do things in the, quote unquote, ‘normal way’ that someone else your age typically can, do them. 

So, I’ve tried a little bit to try to make — I joke I’m trying to bring sexy back to these different aids through some of my videos. But anyway, I can completely understand that and I get the same exact frustration. And I’m very stubborn, too. So, I’ll just be like, and I’m literally like, “Cheryl, you are the person who like made a video about using the jar opener. Why aren’t you just using it?” But I’m like, I don’t wanna take five steps over to the cupboard where the jar opener is. It’s just human nature. Sometimes we don’t wanna be inconvenienced. And it’s not just inconvenience, it’s that it psychologically reminds you that you are not a hundred percent able-bodied. 

[00:22:11] Jamie: 
I find it quite funny and also quite sad. Like, sometimes my nan will give me things that she finds out for — my mom is here and my mom has to help me do something. I’m like, this is not right. This is the wrong way around. 

[00:22:24] Cheryl: 
I know. But, you know, it is — I think, I’ve had this a little longer than you. I’m so old and wise. No, but it is a matter over time, I think the acceptance does sink in that I can’t say a magic word to bring that to you, but realizing that I think it’s this balance between saying, grieving what you lost. Like, this is, I didn’t — I’m not having the experience as a 29-year-old mother of two that I imagined I would have a few years ago, right. But then, at the same time, there’s still a lot that you still can do, a lot that you — so like kind of having gratitude. I think a lot about to myself about like gratitude and grief. Like, they’re, they can kind of coexist. Like, I grieve what I don’t have, but I’m grateful for what I have. But it’s hard. 

[00:23:12] Jamie: 
Yeah. Grief is a really good point, that’s how I’ve seen it too. Like, it’s you go through a massive grieving process, I think, when you get diagnosed. Or many people do. I did, and it’s still very new for me. Like, obviously I am approaching two years since diagnosis, but because at pregnancy I had six months in remission as well. So, really I’ve only had like active disease from diagnosis for 18 months. So, yeah, I’m still very much like learning what I can and can’t do and the adaptations I need to make. Yeah, I’m still learning that adjustment. 

[00:23:44] Cheryl: 
Yeah. And I think when you’re having that adjustment period while having a child that’s continually growing and changing, and two children, I can imagine it’s hard too, right? Because maybe what you’re — you might get your perfect plan set in place for a two year-old and a five-month-old, but then they keep growing and changing. And they need different things. And so, suddenly you’re like, oh, wait, now we’re potty training and I need to do this other action that I didn’t have to do before. 

So, it really is another concept that I think about a lot is an adapting or adaptations. I have to constantly adapt. And there’s not, I think, sometimes when you’re first diagnosed, you kinda have this idea of the end point, “I’m just gonna figure this out and then it will all be better.” And then, but sometimes it’s beneficial to think, “Okay, it’s gonna be like a continuous process of adaptation,” you know?

[00:24:36] Jamie: 
Yeah, absolutely. Like, right now, obviously Kit isn’t mobile. He’s four-months-old and I’m already thinking ahead of, oh, my goodness, like, how am I gonna cope when he’s crawling and walking around, and he’s more of a risk to himself? Especially, yeah, with my knees flaring, I’ve been spending a lot of time in bed or on the sofa. But I think you’ve also gotta not think too far ahead, haven’t you? You’ve gotta look at what’s happening now, work on this, what works. And then, like you said, we’ll adapt when the next thing happens. Yeah. 

[00:25:06] Cheryl: 
So, your condition right now, how is it affecting your ability to parent your older child? 

[00:25:14] Jamie: 
Yeah, she’s definitely the harder one than my son at the moment. And it’s just, it’s the mom guilt, I think. Obviously. So, my knees are really swollen, one in particular, and my fingers are a bit stiff. And it’s little things like I can’t get down on the floor and play with her again. So, I couldn’t, when I was first unwell for quite a while and then obviously pregnant, coming into a remission, I actually, even though I was heavily pregnant, I actually could do a lot more for her. So, and a lot of my friends who were heavily pregnant would always moan about like how hard it was. And actually for me it felt easier because my disease was in remission. And again, like she’d learned before I was pregnant, the things I couldn’t do. 

And then, obviously a pregnancy is a really long time when you’re four, so she’s kind of forgotten what I was like before, but again, she’s now having to learn again what mommy can’t do. And that’s kind of sad. So, things like she wants to play. And I’ll say, “Can you bring it onto the bed? Or can we play at the table?” And sometimes she’s set up her little scene and she’s like, “I can’t move it, Mommy.” And then, I feel so guilty ’cause and then she — of course, she’s pretty good. Like, she will. And again, things like at the moment I can’t take her to the park ’cause my knees are all swollen. There’s not a lot else you can do. So, pre-coronavirus, I take her to soft play. I could sit in the cafe while she had a whale of a time. Obviously, none of that’s open at the moment here. So, yeah. It’s just tough isn’t it? 

And again, first thing in the morning she’ll come in and she sometimes she’s like, “Mommy, can you go make your breakfast?” And I’m like, no, mommy needs a bit of time. So, she gets herself going. “You just watch your show for half-an-hour and then mommy can get downstairs and get you some food.” But yeah, it’s really tough and it’s really hard not to let the mum guilt creep in. I think that’s the worst. I think especially because I was a parent to her before I had my diagnosis and before I was unwell. So, I kind of know the parent that I started out, you know. 

I was a real — I still am, but I was like the kind of parent that would throw her above my head and if we went soft play, I’d be like in the soft play with her and I’d climb the climbing frame with her and I can’t do those things anymore. Yeah. And it makes me kind of sad because I feel like I’ve had to really change the kind of mom that I was and that I wanted to be and find an adaptation to compromise, I guess.

[00:27:23] Cheryl: 
Yeah. That is a completely — it completely makes sense. You had a certain life and it was basically taken from you. And even though you can choose to focus on, okay, what can I still do, you know, it’s still that grieving process. I think it’s just, I’m a big fan from my own therapy of just validating and allowing yourself to feel those feelings, because so often we try to push them away and say, “Oh, well I should be grateful because blah, blah, blah,” but I think it’s healthy to process them. And I know that people listening to your story, so many are going to relate to this idea of, again, a future. It’s like grieving a future that you kind of — not even that you just thought you would have, just, we kind of assume, right? As a young person, you just kind of assume you’re gonna be, yeah, the same kind of able-bodied — 

[00:28:15] Jamie: 
And things like how many children? Like, I always wanted three or four children. And then, just the thought of maybe not even having a second. That was really hard for me to process too because at one point I thought maybe we shouldn’t have a second. Like, maybe I would have to cope or whatever. And I guess I’m still kind of there now because I’m thinking like, I’ve got my two children, they’re both healthy. I’m really blessed. Should I think about having a third or should I not rock the boat? And it’s really tough. ‘Cause I’m also thinking about having — pregnancy is really big on your body anyway. It’s a big thing to go through and obviously some people do have quite big postpartum flares. 

I’m kind of hoping my postpartum flare now doesn’t go absolutely wild and it just stays where it is. It’s the thought that maybe your flare could do damage. So, I’ve gotta think about the two children I’ve got and would it be selfish of me to have a third and maybe put myself more at risk and be able to do a bit less for them, or —? It’s just so tough, isn’t it? And all those, I think having more children when you are able-bodied, I guess, it’s a big decision anyway, but when you’ve got a chronic illness as well, and it’s just a big thing to have to take into consideration. Yeah. And like medications, obviously if I go into methotrexate now, I’d have to then come off methotrexate.

[00:29:32] Cheryl: 
Yeah, that’s to say, yeah. So, you can’t go on a biologic yet because you haven’t, quote unquote, ‘failed’ two DMARDs. Oh, because I was gonna say, so many of the biologics are safe during pregnancy. They’re, yeah. So, I’m like, I wish I could like, we could write a letter to someone and just be like, can you just give her a biologic?

[00:29:51] Jamie: 
I know. I feel like, ’cause I did say to my rheumatologist, I was like, surely the fact that I’m breastfeeding, can’t that just mean I failed methotrexate because I can’t have it? Yes. And she was like, no, it doesn’t work like that. Damn.  

[00:30:02] Cheryl: 
Every single day, I’m like, if I ruled the world. That’s so, so hard and. I don’t know if you feel the same. So, I had my child, which I did. I also did never, ever imagined having an only child. I always thought I would have at least two. My husband and I are both middle children of three. Both of us have an older brother, younger sister, but we both thought we were gonna have two. And so, I was 33 and my disease was very well-controlled when I had Charlie. But then, postpartum it got really bad and then I had some other health issues. But so, by the time the other health issues started getting better, I was like 37. At that point, I’m also thinking, like, not only is this a decision about like everything that you mentioned, it’s also like I’m older, so there’s more complications potentially, and I don’t have as much energy just as a person, not even as a person with autoimmune disease. So, that was a very, very complicated decision as well. But so, you’re much younger, you’re 29, so you’ve got some time. 

But one of the things we had thought about, I don’t know if you guys thought about this, but was spacing out the children larger spaced so that, like, when we were thinking we would have ’em four years apart, when we were thinking about having another still — and just to be clear, the reason we didn’t have another is not just rheumatoid arthritis in my case. Even though I had a really horrible flare up, I had three other acute health issues happen over two years, like a car accident and a tailbone cyst, and then a stomach complete breakdown where my stomach became paralyzed. Yeah, it was horrific. I just, there was no way that physically, it was not safe. Like, even all of my doctors were like, don’t get pregnant. 

And then, by the time that was better, again, it was, I felt it was hard. It was still a hard decision. ‘Cause yeah, I’m very stubborn, so I was like, blah, we’ll just figure it out. And then, I was like, no, actually I can’t do this. But, I was thinking, we were thinking, my husband and I, that four years would actually, four or five years apart could be good because then the older child can do more on their own. Have you found that with Harper like that she — can she help at all?

[00:31:58] Jamie: 
It’s really, it’s funny you say that. So, yes, she’s really helpful and she’s very independent and she’s just really empathetic. She’s an incredible kid. If I say to her, “Can you just get this for Mommy ’cause Mommy’s hand hurts,” or whatever, she’ll do it. She’s wonderful. But it’s funny you said that because I feel really sad that I had such a big gap between my children. And I know that’s me probably overthinking things and it’ll be fine, but I always think, oh, four years, they’re not gonna be close, they’re not gonna be good friends when they’re older. They’re gonna be too far apart in age. And I think if it wasn’t for my illness, I would’ve had a baby sooner. So, we were actually thinking about starting to try for a baby as my symptoms basically started. So, for me, it kinda put me on hold by about two years. But I do feel really fortunate that I fell pregnant with him so quickly. And if we had another, I see the sensibility in waiting another four years so that there’s a good gap again. But equally I’m like, maybe let’s just have another one, like, straight away just, and then deal with everything bad at the end. 

[00:33:03] Cheryl: 
The month I got the tailbone, I had this tailbone cyst and it just was, had delayed wound healing and the whole thing was just a complete mess. But that month, like when I went into surgery for that, they were like, is there a chance you’re pregnant? And I was like, that was the month we had started to try for another one. And ’cause we did the same thing. We were like, I didn’t — I felt like my RA had just gotten under control. And so, we’re like, okay, let’s seize the moment. And fortunately, that time we didn’t get pregnant. Because only — I’m saying fortunately because of having a tailbone cyst surgery is a big deal because the area, it takes a long time to heal ’cause there’s not good vascularization there. 

But we had exactly the same thought process just ’cause Charlie was two at the time. So, we’re like, we kind of think like logically, there’s a case for waiting longer, but we’re like, let’s just get it over with. But I will say something that really comforted me. When we were also grieving the idea of having children further apart was that one of my best friends has three and she said that her oldest and youngest have a really special bond, and there’s five years between them. And she said that sometimes when there’s a bigger age gap, they don’t compete as much. So, they can have a different kind of relationship where they’re still kind of the older one kind of protects the younger one, right. And they can develop a really special bond and siblings that are really close in age sometimes compete and argue more. So, there’s case exceptions to every rule, but I thought that was a good silver lining potentially. 

[00:34:28] Jamie: 
Yeah. There’s pros and cons with all of it. Also, I don’t know why I worry so much ’cause my brother is 10 years older than me and we are close, and we ended up having kids three years apart who are close.

[00:34:38] Cheryl: 
Oh, wow. 

[00:34:38] Jamie: 
I think it’s just, it’s everyone has a plan of how they see their life kind of panning out and it’s, yeah, if something like an illness has to deviate you from that, it’s really hard. ‘Cause you never want — you want your decisions to be just your decisions ’cause you made them and that’s what’s best, not ’cause there’s other factors that are affecting that. Yeah. If we do have a third, I have to wait at least two years though, because I had a C-section. So, I guess that’s probably potentially a good thing. ‘Cause it’s nice for the focus on one child at a time when they’re little.

[00:35:12] Cheryl: 
Yeah. And I really appreciated what you said earlier about this idea that since you had two years with your first child before you had your condition start that now that you have your second, it’s like you wanna be the ‘same’, quote unquote, like the ‘same mom’ that you were, because it doesn’t seem fair to him to have more limitations. I think that’s just a, I don’t know what to say about it other than I think that’s a really insightful point that I’m sure other people will relate to also. Or even I’ve had the thought when my husband and I got married, I’ve had rheumatoid arthritis for nine years at that time. Like, we both thought we knew the sickness and health, okay, generally like speaking, this is a disease. It’s gonna go up and down. But we didn’t have any idea how big the ups and downs would be. We were maybe a little optimistic. 

So, anyway, I felt like I’ve almost done this, I’ve had these kind of — I don’t even think I’ve ever really said it to him, but like I’ve had guilt at times. Like, he didn’t necessarily sign up for everything he’s ended up having to do as my spouse with my health issues. But at the same time, no one knows, right? Like, anyone we know today, like your spouse or my spouse, anyone could get in a car accident or have a health issue just come up out of nowhere. So, that kind of helps remind me sometimes that you can’t — no one can guarantee anyone’s health. So. 

[00:36:42] Jamie: 
Yeah, definitely. And I think with conditions like autoimmune diseases, they’re so unpredictable, aren’t they? That they can be fine, and they can crop up out of nowhere, and then they can be angry, and yeah. 

[00:36:53] Cheryl: 
Yeah. I remind myself too, like, I have a little mantras that I tell myself, and one of them is ‘My son needs me to be present, not perfect’. 

[00:37:02] Jamie: 
Oh, I like that. 

[00:37:04] Cheryl: 
Yeah. Really that, and I — this is also, and I mentioned this a different episode. I’m sorry, this is like way too out there, but I minored in anthropology and I found it really fascinating studying different cultures and the history. And studying anthropology reminded me of how our modern world and the expectations we have of parenting, what children need, what a lot of children need — safety, or they seek safety for their survival. But and throughout most of history, millions of years, there wasn’t this idea that a parent has to sit there and be like perfectly there for their child’s every need. That’s a very, very modern idea. That’s literally only existed for 40 to 50 years, maybe 50, 60 years. 

So, I also, again, maybe this is just me justifying it, but I remind myself that for most of the history, like, the 4-year-old would be like taking care of the little ones. Life was much harder for children just due to the circumstances of shorter lifespan, diseases, safety, for most children through all of history. So, when even if we have rheumatoid arthritis or psoriatic arthritis, our children have still historically have hit the jackpot, right? 

[00:38:21] Jamie: 
Yeah. Yeah. I think also we undermine some of the things that we do. So, at the dinner table every night, me and my family say one thing that we’ve really enjoyed that day, or one thing we are grateful of. And my daughter always says the most like simple, tiny things that they always shock me. It sounds — we’d have like literally done a day trip and she doesn’t bring that up. It’ll be that we all sang Old McDonald in the car. Something so simple. And I think we sometimes forget, don’t we, that they’re the things that actually do make a big impact with our kids. And you haven’t got to be all singing or dancing and active and doing all these things. That just you being present is something that — and even for such a short amount of time. Playing with Play-Doh with her for 10 minutes at the table and then say, “Mom’s gotta go do her things now,” and that made such an impact in her day. We drove to the drive-through takeaway. 

So, I had my husband have my son, and me and her literally went and got a – I got her kids hot chocolate and myself a coffee and we sat in the car park in my car and she came into the front seat and we sat there for 20-minutes. And she always calls them ‘have a little talk’. She’s like, “Mommy, let’s have a little talk.” So, we just talked about like our day and we played ‘I Spy’ and we went home, and she had the best time. It was like I’d taken her to a theme park for the day, you know. And it was completely within my limits of not only the pandemic, but also the fact that I’m having a bit of a flare and everything’s a bit more difficult. And it made me feel really good that I was still able to do things that make me a good parent and that she will remember when she’s an adult, I hope, you know? 

[00:39:56] Cheryl: 
Oh, a hundred percent. A hundred percent. That’s so the same. Even my son loves ‘I’m thinking of an animal’ and like the guessing game, we just call it ‘I’m thinking of an animal’. And yeah, I have to remind myself of that so much that he doesn’t — we’ve gone to Disneyland and Legoland, and of course he remembers those things. We actually went to Legoland in England, Legoland Windsor. It was so fun. So, yeah, he’s been to Iceland, England, Scotland, and of course his favorite things are like playing a board game with the family, playing football, American football. We just have a little Nerf gun that we throw back and forth. That’s actually what his school now they have him do on Monday morning. They write a little thing like ‘What did I do this weekend?’ And he’s like, ‘I played football with mom’, and it’s like, oh. 

So, I hope that’s a comforting thought to other people who might be worrying about — I know I get a lot of questions from people who are worrying about even having one child biologically. Or even with a surrogate, there’s still actually that’s something that we thought about potentially using a surrogate, but it’s like that the pregnancy wasn’t the hard part for me. The postpartum was hard and surrogate would get rid of the postpartum flareup, but it would still be the physical demands of taking care of the other child and stuff. Anyway, I was gonna ask, have you explained — like, a question I get a lot is like, how do you explain to your child about your condition? Have you read a book to her? Not the 4-month-old, ’cause the 4-month-old doesn’t need to know, but to your 4-year-old, have you had an explicit conversation or is it more general, ‘Oh, Mommy has a little owie today’?

[00:41:40] Jamie: 
It’s kind of more general, but she — we use the word, we use the term ‘arthritis’. And I do explain to her, like, mommy’s knee hurts, or, and it’s just more like in daily conversation. It’s actually quite sweet. She goes to a preschool, but she also goes to a home daycare just to extend for my working. And one mom has arthritis, rheumatoid arthritis. And when I picked her up, she said that Harper had actually been talking to her daughter. So, her daughter’s a bit older, she’s 12 and had said something about her mom’s arthritis. 

And apparently Harper was like, “My Mommy has arthritis too.” And they had a little conversation about how mommy can’t sit on the floor with me and mommy’s knee hurts. And it almost made me cry that she’d internalized that, that she really understood that it was part of our family and our family dynamic. And, but I also really liked it because obviously it’s kind of a rare condition, so it was really nice for her to meet another kid whose mom also has it to kind normalize it a bit. But maybe she’s like, all moms have it. When you’re four, that’s kind of how your brain works, isn’t it? 

So, yeah, so she definitely understands it. And she’s very empathetic. Sometimes she’ll ask me to play and I’ll say, “Mommy can’t play.” And I won’t even say why. Maybe because I’m bad mood. “Mommy can’t play with you.” And she’ll just bring her toys up on the sofa ’cause she understands it’s ’cause I can’t get on the floor. Yeah, she’s very good and I hope that she grows up just to be maybe a little bit more empathetic ’cause she sees people with challenges and things, and I hope Kit is the same as well. I think it’s good to have open conversation about it and it just be normal. It’s just part of your family and it’s just, you know, you just adapt. 

[00:43:16] Cheryl: 
Yeah. And I think I’ve talked about this before, but yeah, since I have worked, my past work was a lot with children with developmental disabilities or physical disabilities like cerebral palsy, or spinal cord injury, or just developmental delays. Even without having rheumatoid arthritis, I was really devoted in my mind to teaching my son that, yeah, not everyone’s body is the same, ’cause I think it’s really important as from a young age, for them to have that kind of acceptance of disabilities and that empathy. And children are like naturally curious. The first time we saw someone in a wheelchair, my son was obsessed with cars. Like, his first word was ‘car’ when he was like 10-months-old. He was like, “Car!” like literally. 

Then for three more years it was all about cars, vehicles, dump trucks, excavators. And when the first time he saw a wheelchair, he was like, “Mom, this is the cool, like why aren’t, why don’t we have one of these? You could wheel yourself. It’s like a little car.” He was just so excited and I had to be like, don’t go up to the person and ask them to, like, have their wheelchair. But, he’s like, an electronic — so, like someone with a, who really couldn’t move their body as much as someone in a different kind of wheelchair, like a manual propelled wheelchair. 

Anyway, but the point is that, yeah, I think it’s really important. I wonder, I don’t know whether people, like we talked earlier about how hard it was getting diagnosed, ‘cause you imagine, you assume your future is gonna look a certain way. But if children are taught from a younger age that not everyone’s body is guaranteed to work the same way forever, maybe it wouldn’t be such a blow. I mean, it would still be a blow. I would still have to emotionally process it, but it wouldn’t be so shocking. I just remember feeling, I was relieved when I got my diagnosis because I had been so medically gaslit by saying that you’re just anxious. 

[00:45:05] Jamie: 
Yeah. 

[00:45:06] Cheryl: 
But I remember also being — I was very athletic. Every day I would run. I always played, I played soccer, football, and I was just really healthy. Like, I didn’t do drugs or anything else like that. I was very focused on exercise and health. And so, it just felt so unfair, like, why did I get this? I did everything right, you know? But that is the randomness of life. There’s this book called ‘Fooled by Randomness’ that, I don’t know, it’s kind of sounds depressing, but it’s actually pretty fascinating. And it’s just, we all know this, right? Like, there are people who smoke their whole lives, smoke cigarettes, and never get lung cancer and like smoke until they’re 90-years-old. And then, there’s like people who’ve never smoked to get lung cancer when they’re like 30. Like, it doesn’t make sense, right? 

[00:45:53] Jamie: 
Yeah. It’s just, I totally get the feeling unfair because similarly, like, I am really healthy. I have never smoked, I barely drink. And also like my grandparents and my parents have really good, like, longevity and they’re all healthy. My grandparents are in their eighties and they’re still like very — they’re more mobile than I am basically, sometimes. And I just think what, like, why has this happened to me? 

[00:46:20] Cheryl: 
Yeah. It’s not fair. It’s, and the thing is, it’s just, that’s just not how. At work, I was talking to a doctor, Micah Yu, and he was, he’s a physician who also has, he has spondyloarthritis and he said that, it’s just at some point it’s just the genetics, genetics plus environment. Like, something in my genetics made me probably susceptible to it even though it didn’t affect my grandparents or my parents either. I don’t have any other family history. Something in there, something in the environment triggered, maybe something that didn’t get triggered in your other family members and it’s outta your control. But yeah, it’s not fair. 

[00:47:00] Jamie: 
One thing I do find tough is sometimes Harper will ask me why do I have arthritis? And that’s a really hard question to answer. I kind of give that a bit of a fob off answer because I don’t really have an answer. Yeah. I’ll just say, “I don’t know, Mommy’s body just gets angry sometimes.” But equally, talking about genetics, something that is tough is the fear of your children getting what you’ve got. 

[00:47:23] Cheryl: 
Yeah.

[00:47:24] Jamie: 
That’s literally my biggest — well, not my biggest, but it’s one of my biggest fears. Yeah. So,, ironically, my husband has really bad psoriasis and mine’s always been really mild, so I’ve always found it like ironic and kind of funny that I was the one that got the arthritis element added on top of mine. But obviously, so we both have autoimmune issues, so it really worries me that my children could get autoimmune issues and little things that sometimes. Harper will say, “Oh, my knee really hurts, Mommy,” and there’s no reason for it. And immediately my mind goes into overdrive. And kids do just get aches and pains sometimes anyways. Touch wood, it always been nothing. But oh, my goodness, my heart, every time she says any part of her body hurts, my heart just like immediately goes into panic mode. 

[00:48:04] Cheryl: 
Same. Same. Oh, my gosh. I took my, I took Charlie to the doctor ’cause he was really limping one day, and it was when he was like one-and-a-half, or two, so he couldn’t really explain it. And they figured out that he had a splinter and that’s why. But they were like, no, we’re so glad you brought him in because, like, earlier detection is always important and it doesn’t hurt to rule it out. I understand that exactly. And my doctor said that if you have a disease form of arthritis, your children have a double the chance of getting juvenile arthritis, but that still means it’s two out of a hundred versus one out of a hundred. So, it’s still very rare. 

[00:48:46] Jamie: 
It’s very low. I did look at the stats like before we decided to have any more children, because I thought, I don’t know, I just wanted to educate myself a bit more, like, what is the risk of this? Like, yeah. 

[00:48:58] Cheryl: 
Someone asked me the other day, did you ever think about not having children ’cause you didn’t wanna pass it on? And I never, for one second, thought about that. I don’t — I’m not saying that’s right or wrong, I’m just, that was just my honest answer. No, because even though it’s difficult, it didn’t seem to be something that I would, it’s not deadly. It’s not something that you can’t cope with. And so, to me, it just didn’t — even though my disease was in a lot better place before I got pregnant, but it did not even cross my mind to consider not having a child specifically due to the child potentially having arthritis. 

[00:49:35] Jamie: 
Yeah. So, I really briefly considered it, but then when I saw the statistics were really low, I thought this is fine. Like, it’s not gonna definitely pass it on. I think if they had have been, yeah, had a higher statistic, I potentially would’ve maybe not had more children. I don’t know. It’s hard, isn’t it? I’m just glad it’s not that high and that, hopefully my children can be healthy and can not have the dodgy genes that me and their dad have. 

[00:49:59] Cheryl: 
Oh, I wanted to mention, I don’t know, do you follow Mariah Leach from Mama’s Facing Forward? 

[00:50:06] Jamie: 
No, I don’t think I do. 

[00:50:07] Cheryl: 
So, just in case people listening are looking for more resources, I’ll put this in the show notes, but she is a mom that has just three kids and she has rheumatoid arthritis. She had it before her first, and she started this website. She got a grant to start a website that was just full of valid information about pregnancy, breastfeeding, parenting. And I have actually written some guest articles from the OT occupational therapy perspective or like life hacks for changing baby’s diapers and ergonomics and stuff like that. But she has a, she’s done some great, book reviews. So, she has reviews on children’s books for children about a parent that has a disability. 

Or not books for children about other children that have disabilities, ‘cause there’s a ton of those books. There’s not as many books for children about mommy. Like, ‘Why Does Mommy Hurt?’ I think that’s one of the books, so I can link to those because that’s something I recommend to people a lot. Because children learn through stories, they learn through books. And so, and I’ve, told my son, yeah, at first it was just, “Mommy has an owie. Mommy has an owie in her hands.” And then, “Mommy has an owie in her neck and hands.” And then, also her bottom, like my tailbone. And so, he was just like, “Where does mommy not have an owie?”  

[00:51:26] Jamie: 
Well, that sounds really good because I’ve never been able to find any books that were about parents, so I’ll definitely check that out.

[00:51:33] Cheryl: 
Yeah, just add that to the to-do list. Yeah. The never ending to-do list. But do you have any advice for other people with psoriatic arthritis who might be thinking about having children? Comething that they should maybe consider or something that helped you?  

[00:51:51] Jamie: 
I think — oh, it’s really tough, isn’t it? ‘Cause it’s so unpredictable. It’s really hard to plan for and prepare for. And I remember I looked on the Versus Arthritis page before I started trying and it talked a lot about making sure you’ve got this support network and a plan in place where if you have a big flare. And my family don’t live local. And I remember it really stressed me out because I thought, well, I can’t do that. I can’t have this plan of people to rally around me if everything does go terribly. But I think my best advice would be about with your partner, like, giving your expectations. 

Now it was easier for me ’cause I’d already had Harper, so I kind of knew roughly like what postpartum was gonna look like. And so, when I had Harper — no offense to my husband — I pretty much did everything. And part of that was me being so stubborn and me thinking that it was my role and I should do it all. And I found it challenging even not having a chronic illness. So, before we had Kit and before we even started trying for another baby, I just really explained the things that I would need him to help with, you know, that I will need him to help with the nights and if I’m flaring, could he take time off work and all these things. And it was obviously a very practical plan, but the most beneficial part of it was that it made me not feel so anxious about, like, I basically explored the worst case scenario and what we would do in the worst case scenario. And I think that was good. And he’s very good. He helps a lot with Kit and he knows my capabilities and what I struggle with and he definitely has stepped into that role, which is great. 

[00:53:33] Cheryl: 
I think that’s really good advice. Having a really honest conversation, like you said. And I think my husband’s an engineer and so what we ended up doing is we had to really break it down, like to say, okay, like, he’s a night owl or he stays up late and I’m like, my circadian rhythm is like early to bed, early to rise. And so, one of the things we did to get me more sleep and rest and recovery is that he took like a shift with the baby every night, which was a lot easier once I stopped breastfeeding, ‘cause I didn’t have to worry about pumping or feeding. But, like from 7:00 PM to 11:00 PM he would for sure take care of the baby. So, I could get four hours in a row of good sleep. And then, the rest of the night I would take care whenever the baby, whenever Charlie woke up. 

So, those are like the early days when they’re still waking up a lot, but that really helped, like those little logistical plans, you have to kind of think through all the things that you could potentially need help with, like the bottles. So, if you switch to bottles, your spouse might have to help more with that. And so, yeah, I think that’s great advice. Or, and if you don’t have a partner, I know there’s people who are like single parents by choice or not by choice. You know, having that greater support system, which I know has been so hard during the pandemic, ’cause you might have planned a support system and then no one’s allowed to see each other. And so, it’s definitely a difficult time right now.

[00:54:55] Jamie: 

Yeah, definitely. 

[00:54:57] Cheryl: 
anything else that we haven’t, that I haven’t asked about that you wanted to share with the audience, about living with psoriatic arthritis or about parenting and pregnancy or just anything else? 

[00:55:07] Jamie: 
No, I think we’ve pretty much covered everything. I feel like I’ve just absolutely rambled about everything. 

[00:55:14] Cheryl: 
Oh, no. No, no. You’ve been perfect. Your honesty is so appreciated because again, it’s hard to open up about this stuff, especially, you’re still in the thick of it. You have a 4-year-old and a 4-month-old, gosh. And I know that we were first started talking about doing an episode while you were pregnant, actually.

[00:55:29] Jamie: 
I know. Time just goes so quickly, doesn’t it. It just, it’s crazy. 

[00:55:34] Cheryl: 
It really does. 

[00:55:35] Jamie: 
My son was 4-months-old yesterday and I just can’t believe it. I feel like he literally was born like a week ago. 

[00:55:40] Cheryl: 
Well, and I feel like I really liked this idea of the fourth trimester, like those first three months, My understanding is that if it wasn’t for our hips not being big enough, the baby would keep growing for three more months kind of thing. So, the baby’s not quite ready to be outta the womb. And I felt I remember it really felt like a switch flipped when Charlie was like three months, or done with three months, kind of turned four months. It was like he just became so much more alert. He smiled. It was easier to connect to him. Where can people find you if they want to connect to you on social media? 

[00:56:14] Jamie: 
So, I have an Instagram account, which is @Mama.Bears.Squares with full stops. So, Mama (dot) Bears (dot) Squares. And I’m sometimes very active on there, and then other times I’m completely not active. So, especially since having the baby, just, it’s definitely taking a bit of a backseat for now. But, yeah, like, my messages always open. I love connecting on there with people with arthritis. It’s been such an incredible support system for me that when I first got diagnosed. I actually, funny enough, I have a second cousin with rheumatoid arthritis. So, perhaps mine is more like genetic, I don’t know. But apart from her, I didn’t know anybody else and I didn’t even know she had it until I started going through my diagnosis. So, it’s been amazing for connecting with people, especially of a similar age or going through similar journeys. And it can be really inspiring too, like when you are having a down time, to see somebody who’s really living their life and you think, “So, it is achievable.” I can get to that. Like, I can work and it can be good. 

It can also be the opposite though, actually. I find Facebook a bit more doom and gloom. When I first got diagnosed, I joined some Facebook groups and I really wish I hadn’t. They made me so depressed. Just people who, I remember once reading — I do not mean this to be insulting at all, but I remember reading about a woman of a similar age to me and she’d put how she’d done 30-minutes of gardening and how she was so proud of herself, but she knew that she’d suffer for it tomorrow. And as a mother of a 2-year-old, I thought, I can’t have the biggest thing I can do in 24-hours be 30-minutes of gardening, like, my life is over. So, yeah, it can be a blessing and a curse, I think, social media. 

[00:58:04] Cheryl: 
Oh, absolutely. 

[00:58:04] Jamie: 
And I think the thing with arthritis — rheumatoid, psoriatic — is they’re so different from person to person. And I’ve seen that as well, that sometimes you go looking for advice and it is really hard to get advice because everyone’s advice is gonna be so different. ‘Cause everyone’s joint involvement is different, their flares are different. What helps them when they’re having a flare is different. And if there are so many kinds of medication, I guess the reason is because it’s not when you’ve got something like I guess diabetes, there is, you have insulin and that there’s a certain amount, and it does this, and it does that. Whereas with arthritis. It’s not like that. It’s everyone’s immune system, is so unique and so different. Yeah. So, I think, again, it’s hard to see someone else’s story and compare it to your own because it’s not gonna be the same. 

[00:58:50] Cheryl: 
It’s extremely, extremely confusing and it only has been, I’ve had this for 18 years, so I’ve done a lot of additional learning through my occupational therapy degree, but also talking to other providers and rheumatologists. And it takes a long time to understand why it’s so important for the solutions or the treatment plans to be individualized. Like, if you listened to the episode with Dr. Yu and the episode with Dr. Wada, they both talked about alternative medicines and other paths and that it’s not like there’s one diet or one supplement that works for everyone. 

Because you have to say, okay, how severe is your disease? How long have you lived with it? What’s your history in terms of what other medications did you respond to? What other comorbidities do you have? What’s your age like? It’s so complex. But when you go on these groups, everyone’s just looking for, what’s the one thing? What did you —? I see it every single day. What’s the diet? What’s the supplement? And then, you’ll see these anecdotes and you’re like, oh, my gosh. Well, the vegan diet worked for one person and then someone else is like keto, which is like the opposite of vegan. And they’re both valid. They’re just, well, they’re valid experiences. There is more evidence for like plant-based than there is for a keto, just for the record. 

But at the end of the day, you as a patient kind of don’t — I kind of don’t care if 99% of people respond better to one intervention, but I’m in the 1% that doesn’t, then I don’t really care about the other one. For me, I just wanna know what’s gonna work for me. But I think it’s so important to go tread with caution on the Facebook groups with the — I just yesterday also on, somebody posted — the same person, poor person, they posted on a Facebook group and Reddit the same post. And I happened to see both of them. The algorithm was like, you need to see this. And the person just felt like they were, like, they were, I think 29 or 31 and they said, “I feel like I’ve just received a death sentence.” And again, that is valid emotion to feel. But it was actually really heartening to see a lot of people rallying behind this person. And some of them were giving a little bit of truth bombs. Like, dude, chill out for a second. We don’t know for sure. You’re gonna be okay. But this is not a death sentence. There are lots of treatments. 

[01:01:01] Jamie: 
And that’s how I felt when I got diagnosed though. I think, well, when you see the word ‘progressive’, it’s a frightening word. And actually, one of the physiotherapists who specialized in rheumatoid arthritis that I spoke to in the early stages of my diagnosis is he wished that they would get rid of that now. He was like, it used to be a progressive illness because there weren’t enough treatments for it. And he was saying how — so he did hydrotherapy. I was doing a hydrotherapy session. 

He said, when he very first started working, he would literally have the rheumatoid arthritis patients literally wheeled to physio, they were deformed, they were immobile. And they’d be, like, hoisted into the pool. And he was like, it’s so different now. People, because of biologics, people don’t have that outcome anymore or it’s very rare. And so, he kind of was saying he really wished that like the NHS definition, which we’re always told to go to in the UK, it’s always like the right one, they would take the word ‘progressive’ out of it because it’s not — oh, obviously it is still progressive, but not in such a big way, you know?

[01:02:00] Cheryl: 
Yeah. I think the way that I try to help people make sense of that is I say if it is not controlled, it is progressive, but there are so many ways to control it now through primarily medications. Also, for some people, lifestyle changes are enough depending on how severe your disease is. But yeah, I think it’s important though for people who are scared of medication to understand that it’s progressive if you don’t treat it because I hope it helps them get over that hump of their fear of medications, because I understand that it’s scary to take a medication that has a known side effect, but the disease itself uncontrolled is scary also. 

So, yeah, people who’ve worked in the field a long time, they, like you’re saying with your physiotherapist, that historical understanding I think is so important because the modern era, people a lot of times are scared of the medications and they don’t realize how lucky we are to have them. Again, I understand that there are some real side effects for people. And I’m a little biased because I’ve taken three different biologics. I’m on my third biologic now, plus two other medications, including methotrexate. And it works for me, and I don’t have a lot of side effects. But I was gonna say, when I was first diagnosed, my mom — I had no idea about the story, but I was diagnosed when I was 20. I was a junior in college, about to do my senior year at university. I was going to school in New York and I got diagnosed in Seattle during my summer break. 

And my mom said that she, they had told her, “You’re gonna have to inject this medication Enbrel.” My mom said, well, can you just, can we just wait a year till she moves back? Like, why does she really have to do this now? Does she have to take —? And she, my mom wasn’t like against the medication, she just thought, this seems like a lot of hassle. She has to go every month and get this medication, and get a little refrigerator for her dorm room so that it’s refrigerated. And the woman said, she said, “I have seen people get up out of their wheelchairs after living, being in a wheelchair from rheumatoid arthritis for 20 years, they’ve taken this medication and in three months they’re out of a wheelchair and they’re like running.” She’s like, “Your daughter, you cannot play around with this. You have to take this medication right now.” And my mom was so grateful to that person for reinforcing that to her. This is not just arthritis. This is something that will progress if you don’t control it. But I agree. I think it should be explained that it kind should kind of have a caveat. Like, it is progressive if not controlled. Fortunately, nowadays there are many valid ways to control it or something like that. I don’t know how to put that.  

[01:04:28] Jamie: 
Yeah, no, I agree. So, some people can control it really well with like holistic alternatives. But I think other people can’t and you’ve, yeah, you, it’s not really something you wanna play with. And lots of people, like, when I got told I’d have to take medication forever, I really didn’t want to. It’s a horrible thing to, especially when you’re young, you know? I went from stubbornly, like, not even wanting to take Paracetamol when I had a headache to literally being on drugs forever. It’s funny ’cause I said to my rheumatologist before I went on the medication. I said, “Well, do I have to be on this forever?” And she said, “Oh, we don’t like to use the term forever. We use the term long-term.” And I was like, basically, yeah, 

[01:05:06] Cheryl: 
You wanna put lipstick on a pig. Okay. I know one of the nuances is that if you get the disease under control early and aggressively now, that the likelihood of going into remission and being able to wean off the medications is much higher. So, many people who are on the drugs for even 10, 15 years when you, if you’re in medicated remission, you can then wean slowly down on your dosage and see whether you can go off of it. So, that’s a really exciting possibility.

[01:05:38] Jamie: 
Also, we don’t know what the future holds, do we? I think it’s quite exciting that in our lifetime there might be another big breakthrough. There might even be a cure. Who knows? So, I’m always optimistic like that. I’m always thinking it might not be forever. And I guess maybe that’s why my rheumatologist did use the term long-term, even though like it is, it did make me laugh when she said it. Yeah, because I guess you don’t know, do you? Like, it’s, yeah, science is developing every day and obviously there is quite a lot going into arthritis, especially now with the pandemic actually. Like, perhaps something that they’re doing might make a bit of a breakthrough in the next sort of wave of medication. 

[01:06:10] Cheryl: 
I really hope that happens. Yeah. And I, of course, we’re all hopeful that there’ll be a cure so that we don’t have to stay on these medications. But it is really good to know that some people, I guess I would be example of that, can stay on, and I’ve been on these medications for 18 years. That’s what I was saying to the person who was freaking out, ’cause they kept saying, you’re damned if you do and damned if you don’t. Because if you take the medication, you’re gonna get liver cancer. And then, if you don’t take the medication, the disease is gonna get you. I’m like, whoa, whoa, whoa. Hold on. You’re considering only the negative possibilities, which may happen, but you’re not considering the positive possibilities, which is you could take this medication and have no side effects and control your disease and feel good. 

But it’s kind of human nature, right? When you’re in that — again, it’s valid to go through the freak out period. I’m glad you mentioned that though, that the social media, ’cause I do — that is a passion of mine to tell people, be really careful which groups you go on and which stories you hear. ‘Cause it was something I always tell people is, when I was in medicated remission, I wasn’t on any groups and I wasn’t talking about rheumatoid arthritis ’cause it wasn’t affecting my life. I was just living my life. Like, I was just going to the doctor every three months and getting blood work done and then just, you know, I was running 5K’s and I was playing soccer and I was swing dancing, and I was feeling good. So, people who were in the group, no one —

[01:07:34] Jamie: 
Someone said that exact same thing to me. That when you are, when things are good, you’re not on social media ’cause you’re living your life. And that was very eye-opening for me, that the people that — not always, but sometimes some of those groups are the ones that are really struggling and they’re lonely, so therefore they’re on social media a lot and yeah, I think that’s something to bear in mind. 

[01:07:54] Cheryl: 
Well, thank you so much. I just wanna make sure that I give you time to go get — speaking of children earlier, that you have to get your 4-year-old, pick them up. But is there anything else that you wanted to say now that we’ve kind of gone on some other side topics?

[01:08:08] Jamie: 
No, I don’t think so. Just thank you so much for having me and it’s been so nice to meet you over video. 

[01:08:14] Cheryl: 
I know. It’s funny because we’ve chatted on social media, but this is our first time actually talking in real time. And I’ve just, yeah, it’s been really a pleasure talking to you and I really know that everyone listening is going to just resonate with what you’re saying. And so, I really appreciate you taking the time.

[01:08:29] Jamie: 
Oh, thank you so much. 

[Ending note]   
Thank you so much for listening to another episode of the Arthritis Life Podcast. This episode is brought to you by the Rheumatoid Arthritis Roadmap, an online course that I created from scratch to help people live a full life with rheumatoid arthritis, from social and emotional aspects of coping with rheumatoid arthritis to simple physical strategies you can use every day to manage things like pain and fatigue. You can find out more on my website, myarthritislife.net, where I also have lots of free educational resources, videos, and more.  

Thank you so much for listening to another episode of the Arthritis Life podcast. This episode is brought to you by Rheum to THRIVE, an educational program I created from scratch to help you go from overwhelmed to confident, supported, and connected in a matter of weeks. You can go through the pre-recorded course on your own, or you can take the course along with a support group. Learn more at the link in my show notes, or you can always go to www.myarthritislife.net. That’s life.net. 

And if you like this podcast, I would be so honored if you took the time to rate and review it. I also encourage you to share it with anyone, who might benefit from it. I also wanted to remind you that you can find full transcripts, videos, and detailed show notes with hyperlinks for each episode on my website, www.myarthritislife.net. If you have any ideas for future episodes, or if you want to share your story or wisdom on the podcast. Just shoot me an email at info@myarthritislife.net. I can’t wait to hear from you.