Episode Julie C
Podcast

It’s just a bad day, not a bad life: Julie Croner’s Psoriatic Arthritis Journey

April 24, 2021
49 min read
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In Episode 32 of the Arthritis Life Podcast, Julie Croner shares the many ups and downs of her journey with psoriatic arthritis, avascular necrosis and complex regional pain syndrome. She explains the importance of sharing your patient story and learning to take charge of your own health journey.

Specific topics include:

  • Julie’s experience with multiple knee surgeries 
  • Avascular Necrosis leads to Complex Regional Pain Syndrome and Julie is bedriddenfor 6 months
  • How a trip to Disney World led to Julie’s epiphany that she should share her story and start a blog
  • How Julie put her Information Technology (IT) degree to use while tracking her symptoms and discovering her unique inflammation triggers
  • How Julie discovered the most important tools for living a healthy, full life with PSA
  • Julie’s current role as a patient advocate with WEGO health
  • How PSA affected Julie’s dating life and how she met her now husband
  • Julie’s experiences with pregnancy and parenting with PSA

Speaker Bios:

Episode Julie C

Julie Croner, a psoriatic arthritis patient leader, is on a mission to advocate for ALL advocates. She’s the Vice President of the Patient Leader Network at WEGO Health and was named to MM&M’s inaugural class of 40 Under 40 in 2020. Julie has been featured by Stanford Medicine X, the National Psoriasis Foundation, Everyday Health, WebMD, HealthLine, and more. 

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.

This episode is brought to you by the Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition.

Episode links:

Medical disclaimer: All content found on 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:

1:00 – Introduction to Julie.

2:00 – Julie’s winding journey to a psoriatic arthritis diagnosis: knee surgeries / swelling from fifth grade until after college and during work as an Information Technology (IT) consultant.

4:55 – Julie gets the adult diagnosis of psoriatic arthritis (PSA) and her rheumatologist helps get it under control. She’s able to connect the dots of her chronic health issues in retrospect and see how it all relates to psoriatic arthritis (PSA).

8:24 –  Julie also experiences avascular necrosis in the femur bone (leg) which led to complex regional pain syndrome (CRPS). She started connecting to other patients online, got medication for PSA and started exploring diet and lifestyle. 

9:48: Julie researches anti-inflammation lifestyle approaches, and uses her IT consultant skills to make an excel spreadsheet to track everything (food, movement, mood, medications, etc) for 6 months and discovered her unique inflammation and flare  triggers. 10:55 The BEST thing she did in her journey!

11:20 – Julie discovers that her body is sensitive to food triggers. She discovers that gentle movement, meditation and mindfulness helps her. She continues going on and off medications when needed. 

12:40 – Cheryl reflects on the importance of discovering your own unique triggers and not thinking there is a one size all solution. 

14:00 – Julie’s worst food triggers for joint inflammation. (15:12) 

15:44 – Julie is bedridden for 6 months due to her Avasular Necrosis and is depressed. Her parents take her to DisneyWorld and she has an epiphany after doing a singing competition!  She decides to share her story through starting a blog: “It’s just a bad day not a bad life.”

19:20 – After being on disability for four years, she decides to focus on a career in patient advocacy rather than IT consulting.

20:30 – Julie starts working for WEGO Health, a network of patient leaders. She helps patients and loved ones use their story and get connected to companies wanting their insights.

23:40 – Why Julie thinks it’s so important for patients to share our stories: how she found an answer to her avascular necrosis due to seeing another patient’s story online.

26:50 – How Julie’s health conditions affected her dating life, and how she met her husband. Her husband said, “You talk like you USED to be great, and the person I see IS really great! (28:13)”

30:00 – How did PSA affect her family planning with her spouse who is in the army. When pregnant she felt very nervous and overwhelmed.  She signed up for a MothertoBaby study.

33:45 – During her first pregnancy PSA went into remission, psoriasis in 1st trimester. Second pregnancy didn’t go into remission. 

35:15 – What helped her when babies were little: asking for help, planning ahead, pacing yourself. 

37:15: How Julie copes with big emotions while parenting: Headspace app and Mindful Mamas app. 

39:36 – Julie’s best advice for newly diagnosed patients – empower yourself and be a partner with your medical team.

40:45 – Cheryl and Julie’s advice to patients who are overwhelmed when “doing their own research” – how to evaluate which resources are high quality information and which are low quality or dangerous. Reflections on how to navigate disease-specific Facebook groups.

44:15: Julie’s concluding thoughts: if you are dealing with an autoimmune disease, you are not alone.

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, Julie! Thanks so much for coming on the Arthritis Life Podcast. 

[00:02:42] Julie: 
Thank you. Thanks so much for having me. I’m really excited just to talk about all things arthritis in life and yeah, get into it with you. 

[00:02:50] Cheryl:
Awesome. Can you start by just giving a brief introduction to yourself, like where you live and maybe something fun about yourself?

[00:02:57] Julie: 
Sure. Okay. So, I’m Julie Croner. I live in Pittsburgh, Pennsylvania. I have two little children, Emmy, who’s three, and Wesley, who is eight months today. And, oh man. Well, I’m living with psoriatic arthritis. What’s something fun? Oh geez. I don’t even know my life is filled with Cocomelon or Disney these days.

[00:03:22] Cheryl:
When I met a new therapist that I was going to see, they said, “So, what are some of your hobbies?” And I remember literally saying, “I like playing Legos,” like my 2-year-old. And I was like, okay, I guess that’s my hobby. Like, I couldn’t even think of anything else off the driveway. So, yeah, I think that’s a mom thing. Yes. So, I didn’t mean to put you on the spot, but yeah. And I always like to start with people’s diagnosis journey, because it is usually dramatic, interesting, and instructive for others. So, how did you get diagnosed with psoriatic arthritis? 

[00:03:54] Julie: 
Oh, geez. Well, take you back to fifth grade. And I started having a lot of knee problems. So, my parents took me to an orthopedic and they looked at my knee and they were like, “Oh, your meniscus looks like it’s ripped, flipped, and separated from the bone. Maybe it was born like that. Maybe you just did it through dancing or softball, let’s do surgery.” So, I had surgery in fifth grade. And then, after that, every year I just seemed to have something. Like, I was in physical therapy or I was on crutches or I had a knee brace and just it — again, the orthopedic was just like, “Oh, this is the one-off issue. You’re growing.” Things like that. But by the time I was really into middle school and was still having these issues, the doctor was like, “Okay, maybe you should go see a rheumatologist.” 

So, I went to see one and they were like, eh, we don’t know if there’s anything wrong with you. I went to see another one and they said, you probably have psoriatic arthritis, but there’s no definitive test. And I was in middle school. This is the early nineties, so biologics weren’t indicated for juvenile use yet, so they were like, there’s really nothing that we could put you on. We could treat it as flareup as it comes, you know, whatever. So, we left the doctor’s office and my mom thought, okay, she probably has psoriatic arthritis. And I, being a little kid, was like, I don’t have arthritis. I’m not a grandma. This is not — no, this is not a thing. And we didn’t have Google to go and see all about what psoriatic arthritis was.

So, I feel like I lived in denial for years and years of this. And I remember just having so many fights with my mom where I would have issues, I’d be like, oh, I can’t run the mile in gym ’cause my knee swollen. And she’d be like, “Well, it’s because of the psoriatic arthritis.” And I’d be like, “I don’t have psoriatic arthritis!” Screaming matches. I have since then apologized. But I just, back then you couldn’t tell me what to do. So, as the years went on, I would have one-off issues. And it didn’t — I ended up having two more surgeries in high school and then college I had a little bit of a reprieve. But once I graduated college and was, working, I was traveling every week as an IT consultant, my knee started to blow up again. It was really swollen, and then it came all the way up into my SI joint. 

And then, I just remember walking through the Atlanta airport, and if anyone’s been to the Atlanta airport, it’s huge. So, going from terminal A to E every Monday and Friday, it was just, I cried. Like, I was in so much pain. It was just so bad. So, went back to the doctor. Ended up having two more surgeries, again, thinking they’re like one off things. By the end of that year I was in the hospital, so inflamed. My rheumatologist now, I met her that hospital. She came in and she was like, no, you definitely have psoriatic arthritis. Like, we gotta get this under control. So, technically I started thinking that my diagnosis happened when I was 27, but way back when a doctor said you probably have it, and I lived in denial for so many years. 

[00:07:00] Cheryl:
Well, and that’s so common because especially as a child we have this kind of idea that, oh, you get an owie or you get hurt and then it gets better. Or you have a surgery and then you recover.And that’s so fascinating that you actually got the diagnosis in middle school, but then it didn’t really get followed through. Did any of the surgeons later on know that you had that diagnosis? I’m just curious. 

[00:07:22] Julie: 
Well, so I did go — all those surgeries that I’ve had, I’ve gone to two different orthos. And the one in the beginning, I don’t talk to anymore, but the one who did my most recent ones. He was like, “Oh, okay. Yeah, that does make sense. That makes sense.” And was just like, yeah, whatever, wrote it off. I since have stopped going to him because I’m like, I don’t really just wanna have a yearly knee surgery for a chronic inflammation issue. What is interesting though is my mom is an amazing woman and she kept a binder on my life from basically the first health doc, like, appointment that I had as a baby up until the end of — well, actually probably forever. It’s a huge binder. So, whenever I started looking at, my life, it was a connect the dots of, okay, yes, this is systemic, chronic, like inflammation. This is a hundred percent psoriatic arthritis. So, if you go back and look at the history of my health journey, it’s a perfect picture of PsA. 

[00:08:34] Cheryl:
Wow. And it that illustrates how often it all becomes clear in retrospect. But in the moment, it’s hard to see those dots. And did you have skin symptoms at all?

[00:08:46] Julie: 
Yeah, so that is really funny because I would go to the dermatologist for what now I realize the psoriasis around my scalp line and like in my hair, and they kept misdiagnosing it as like fungus. They kept saying, “Oh, you have fungus on your head.” But like I always kept getting it and now it’s, like, hello? Like, I had, so I have had psoriasis and so psoriasis hasn’t been a huge symptom that I’ve had with my PsA. Probably the worst I’ve had, it was actually during my first pregnancy. I had some on my chest and on my arms and a few spots on my leg, but mostly I just get it in my scalp and like behind my ears. But yeah, so if you look in my binder, it, I definitely went several times and it was always misdiagnosed, which is crazy. 

[00:09:37] Cheryl:
Wow. Oh, my gosh. And I wanna make sure I get the chronological, I wanna finish the chronology. So, then when you got the knee surgeries again after college and then you went back to the rheumatologist and were like, okay, now we’re gonna attack this as psoriatic arthritis. Do you mind sharing like your treatment plan or how that’s been going? 

[00:10:01] Julie: 
Sure, sure, sure. So, at the time that I got my, you know, what I deem as my official diagnosis, I was also having a few other issues as well. So, the biggest one was avascular necrosis. So, part of my femur bone died in two places in my left leg. So, it was causing so much pain, which then ended up starting into complex regional pain syndrome on the left side of my body. So, I had a ton of different things going on. And back then, I thought the avascular necrosis or AVN was the biggest issue because again, I didn’t understand all of the components at play. So, I kept going, looking for answers, but every doctor didn’t wanna touch me because my body was so inflamed because of the psoriatic arthritis. So, it really wasn’t until I started talking to patients online and finding out what they were doing to manage their chronic inflammation that I started on this healing journey. Because every — my rheumatologist put me on the traditional methotrexate and then Humira, and then every pain meds and this medication, and I was on like nine different medications and two injections. 

So, I just, every time I went I would get more medication. But once I started connecting with people on Twitter and on Instagram and Facebook, I started realizing that, oh, these people are doing diet changes. They’re doing lifestyle changes. What can I do to help manage my symptoms? So, this was back in 2013, and I went to the library and I checked out all of these like anti-inflammation cookbooks and diet books and just trying to do all my research. And then, me being the consultant that I am, I made this ridiculous Excel spreadsheet and I tracked everything. Like, when I ate, what I ate, all the ingredients, how I was feeling, who I talked to, my mood, if I left the house, when I took my medication, what medications I took, like, literally everything. So, I tracked for six months. And at the end of that I had all of these bar graphs and pie charts and like all of this amazing data on myself that I ended up printing out and taking to all my doctors. 

And you should have seen the look on their face because they’re like, what is wrong with this lady? But no, that’s the best thing, right? Like, it honestly was the best thing that I’ve done in my life because it helped me identify my triggers and what really causes my body to be inflamed. So, at the same time I was on medication, which was really helping. So, I was really, all these changes I were making was helping my body support even the medication to make it more effective. So, for me, I have found my diet is like the number one thing that causes me issues. If I keep such a strict diet and people are like, how do you do that? I’m like, honestly, if I don’t, I can’t get up the next day. Or my hands hurt so bad, or my back is like aching ridiculously. So, my body’s so sensitive, so I figured out exactly my food triggers. 

I figured out that gentle movement with yoga and things like that really helped keep my joints moving and keep me going, keep my energy up. And I realized that meditation and mindfulness is something I have to have in my day to keep my nervous system in check. ‘Cause if that starts to spike, then I start to feel anxiety and then the pain creeps in and I just get overwhelmed. So, with figuring out my triggers, that is primarily how I manage my psoriatic arthritis. Now, I’ve gone on and off medications throughout the years. I’ve been on different ones. Every so often I have to try different things. Maybe I go into physical therapy to get me going. Or I’ve done occupational therapy for my hands, which was like a game changer. I loved that. I just feel like really good sense of what my body needs and wants and being tapped into that helps me manage.

[00:14:17] Cheryl:
That’s so, so helpful and I think that what’s key about that is that you researched all these different like diets and stuff, and then you looked at your own body and your own data. And I think this is where people get stuck because a lot of times people think, what’s the answer? What’s the diet, right? What’s the diet for rheumatoid arthritis? What’s the diet for psoriatic? And there are so many different triggers that are unique to each person. So, like, I’ve been gluten free for over a decade. It has not made any difference on my rheumatoid arthritis? 

My rheumatoid arthritis has been everything from complete unmedicated remission to I’m on now three different medications an, but it really helps my gut health and my irritable bowel syndrome, and I get recurrent SIBO, like small intestine bacteria overgrowth ’cause I have gastroparesis. So, it really helps just my overall sense of wellbeing and I know it helps my inflammation, but it just doesn’t seem to correlate at all with my actual joint pain. So, that’s for me, gluten isn’t the thing, but for someone else, gluten is totally their main trigger.

[00:15:22] Julie: 
Right, exactly. Exactly. I know. And I get so many people that are like, “What’s the diet I should follow?” And they’re really, there’s not a one size fits all, I think. I think there are things that people should avoid overall just for better health and sustaining our bodies. But when it comes to triggers with our autoimmune issues, I think everyone is so unique. 

[00:15:44] Cheryl:
Okay. I know the audience is gonna wanna know, like, what are maybe like your top three worst inflation triggers? 

[00:15:51] Julie: 
So, I definitely stay away from dairy. That’s like huge. Red meat. If I have a little bit of red meat, my joints are swollen. And then, I like to say that I don’t eat grains. But I will be honest with you, I cheat with gluten-free grains, so I definitely can’t have gluten. That is a huge no-no for me. But I have found even eating rice and oats and things like that, it does impact my fatigue level. And also, then if I eat more of it, then I start to feel it in my hands and my back. But I do cheat and I eat gluten-free cupcakes and cookies, and especially now having little kids. Honestly, that’s why lately I’ve been having a lot of pain and I know it’s because I’ve been eating that kind of stuff. 

[00:16:46] Cheryl:
It’s hard too, it’s so hard. You have to have an overall kind of quality of life balance too. It’s like with exercise some days, like you think, okay, going on this hike with my family, I know I’m gonna pay for it tomorrow, but this is more enjoyable to me in the moment and I’m valuing that over the pain. So, maybe the cupcake can be the same thing I’m valuing. But yeah, and I wanna step back and think about, like, you mentioned that you didn’t really come to terms with — or, sorry, I don’t wanna put words in your mouth. You, when you started connecting to other patients on social media, you started understanding what the disease is more and the plethora of options available. And then, when did you decide to start sharing your journey? 

[00:17:31] Julie: 
So, no, I totally agree. You definitely weren’t putting words in my mouth because that is exactly it. I didn’t understand all of this until I started connecting with other patients. And so, in December 2012 is when I had the hospital stay that got me my diagnosis. And then, into 2013 for six good months, I laid in bed. I didn’t put any weight on my left leg ’cause of my AVN. It was just, it was a very depressing time. I mean, honestly, it was bad. My parents were like, okay, we need to get you outta this funk. Like, you gotta do something. So, they ended up saying, “Hey, let’s go on a trip.” I love to travel and I didn’t even wanna go because I was having such a bad anxiety and panic attacks even going to the doctors just because my inflammation was causing just so much in my body. 

So, I didn’t even wanna go on this trip, but they forced me to go and I’m so glad they did because we went to Florida and we ended up going to Disney World for two days. And I had always loved to sing. Growing up I always sang. It was just like my release and probably the biggest thing that brought me joy. And I had always wanted to go to the American Idol experience at Hollywood Studios. So, we get down there. I’m like, “Oh, we gotta do this, we gotta do this.” And my parents are like, you wanna do this? Like, you didn’t even wanna come on vacation, been having all these panic attacks. I’m like, yes, I want to do it. So, I’m standing in line. I’m like, shit. What am I doing? Like, I’ve been laying in bed for the last six months. Like, what? So, I auditioned and I get cast in one of the shows during that day. So, I’m like, oh, my God, this is so cool. They do your makeup, they get you all ready, you practice, you go up, went up on stage. And like the fake Ryan Seacrest is like, “All right. Now, Julie, come up on stage.” 

So, I come up and I crutch out and I’m standing there with my crutches singing and it was just like, oh, my gosh. Like, I spent the last six months in bed so depressed thinking that like my life was over. But you know what? It’s not. Like, I could still live this amazing life. I can still do these things that I want to. They may look a little bit different, but I’m not gonna let this define me. So, I ended up winning that show. And I went to the finals and I didn’t win that final show, but I walked away with so much more than a golden ticket that day. Like, I walked away with knowing you know what? This sucks, but you can make something out of this. So, the next day, we were actually sitting on the beach and I thought, all right, what have I learned over those last six months? And I’ve learned a lot about myself, I’ve learned a lot of patience, and I’ve also learned that connecting with all these other patients online really helped me feel less alone, and helped me start on this path of healing. It was right then in that moment I was like I’m gonna start a blog. I’m gonna start sharing my story. And I came up with that, ‘It’s just a bad day, not a bad life’, because it’s like I had a string of really bad days, but it didn’t mean I had this bad life. I could still do these amazing things. 

So, I came back from that trip and I started my blog. And from there, it just snowballed. Like, I it started as just like this healing therapy of getting my story out there to connecting with others. And then, I’m someone who can’t just do one thing. I have to do all of the things. So, I started seeing all these other people doing stuff and I just started inserting myself in conversations and going to conferences, and then I realized like this could be my full-time career. So, I was actually on disability for almost four years and whenever I started to become well enough to get back to working, I thought I could go back to IT consulting or I could really focus on this as a career path. And that decision was super easy. So, the reason that I started doing this, really, I feel like it was something that I was always meant to do. And along my journey, it just brought me to this point. 

[00:21:40] Cheryl:
That is so incredible and the metaphor of ‘If you can’t, if you can’t dance, sing’ kind of thing. There are a lot of things that we can’t do ’cause of our conditions, right. And we don’t wanna just pretend those aren’t there. But then, focusing on what you can do that is just, thank you to your parents for taking you to Disneyland, right. I know at Disney World — we have never talked before, by the way, for the audience, but I feel like we’re like in this like total similar wavelength. Okay, let’s operationalize this. I’m not an IT consultant, I just like that word. But so, what are you doing now? I know you’re working with WEGO, or working for WEGO Health. What is that? 

[00:22:19] Julie: 
Yes, so whenever I started trying to interject myself into all these conversations, I went out and I was like, okay, what companies are helping to raise the patient voice and get them collaborating with companies? And WEGO Health was someone that I identified and I started working with them while I was on disability. They had sent me to a few conferences. I did a few opportunities with them. So, whenever I was getting off disability, I reached out to them and I was like, hey, do you have any job openings? And they actually were hiring at the time, so I like seamlessly moved over to there and it’s just been such an amazing experience. So, before I worked there, I was very much in the psoriatic arthritis, psoriasis, autoimmune arthritis community. But moving into my role at WEGO Health, I now work with all condition area advocates. And I will tell you, I didn’t realize how important and beneficial it is to step outside of your own condition area bubble and see what other people are doing and learn from them and collaborate with them. 

So, I started this journey as a psoriatic arthritis advocate, and I’m still very much in that space as much as my life allows me to be, but I do feel like this higher calling to be an advocate for all advocate and help them collaborate with companies who want their insights, who wanna collaborate, who wanna listen to what the community needs and wants. So, at WEGO Health, we’re a network of patient leaders and we consider someone a patient leader who is using their health story or the story of the loved ones to really go out there and make change. And we connect them with healthcare companies who are looking for their insights or they wanna collaborate with them. 

So, a couple, like, just to give you a couple examples. One would be, say for instance we’re working with a company that has an RA treatment and they wanna know about the RA community. We’ll pull in, say, 10 RA patient leaders and we’ll have an insights group and we’ll talk about the community’s needs and wants and things like that. So, we do a lot of that. And then, we also utilize patient leaders in creative. So, say, for instance, we’re still working for that RA brand, instead of seeing a commercial with an actor running through a field of daisies, we feature you and in that commercial or you talking about your experience. So, we really wanna bring the patient voice to the forefront and make sure that anybody who has anything to do with these conditions are really collaborating and listening to the people who are on the front line.

[00:25:00] Cheryl:
That’s so important, and I know that people have such strong feelings about those commercials with actors and everyone. This is why I’m even doing this podcast, we all just, when we get this diagnosis or when we have a new stage in our health journey, we wanna just know we wanna connect to somebody who’s been there, right? Who’s been on this medication or who’s dealt with this before. So, I love that. And in general, I know that both you and I are like big advocates for sharing their stories. Why do you think it’s so important for patients to share their stories if they feel comfortable?

[00:25:35] Julie: 
Yeah. Well, and that’s such a good thing. It’s you have to feel comfortable in doing so, but if you do, even if you impact one person, think of how much you can impact them. So, I’ll give you an example. So, with my avascular necrosis. So, just a reminder, part of my femur bone was dead in two places. I went to over 29 different providers. No one was giving me answers. They would say, “Oh, I know what it is, but I don’t know how to treat it and I don’t really know where to send you.” So, I felt so hopeless in what I was gonna do. It wasn’t until I saw people online sharing their MRI films of the stem cell procedure that they did that I found the answer that I was looking for. I ended up going and having the stem cell procedure done. I can now walk, like, I couldn’t walk for three and a half years. I now can walk. I’m off opioids that I lived on for all this pain. 

I honestly didn’t think I would be able to walk down the aisle at my wedding or be able to walk with extra weight of having a child. And now I’ve done that twice and had those people not been sharing their story online, I may not have found that stem cell procedure that got me back to literally walking. So, it’s just, when you share your story, whether it’s just on your Instagram, sharing your journey of going to doctor’s offices, or if it’s like a full blown you’re writing a blog or you’re doing a podcast, you’re making others feel less alone. You’re giving them more information than you may have had when you were in their shoes, and you’re just helping push forward a different future for others who received this diagnosis.

[00:27:14] Cheryl:
That’s so true. And yeah, I remember when I got my diagnosis at age 21. This is in 2003. And there were maybe there were rudimentary blogs back then, but nothing was easy. Like, you couldn’t just sign up on WordPress or something. And I certainly didn’t even think to look for other patients online. It just wasn’t part of the norm. Facebook didn’t even exist yet. So, yeah, just the fact that we have this tool of online connection is just incredible. 

[00:27:41] Julie: 
It is. It is. And there’s so much information out there online, and I think there’s so many patient leaders out there who feel charged to go and comb through that information and find the best information to share out to the community. So, I feel like patients sharing their story are filling such a gap that is needed for other patients and caregivers. 

[00:28:03] Cheryl:
[Intermission begins]

Hi, everyone! I’m interrupting really quickly to remind you that this podcast is brought to you by the Rheumatoid Arthritis Roadmap. It’s a comprehensive online education and support program that I created from scratch to help people learn how to live a full life despite rheumatoid arthritis. In the course, you get to learn how to manage everything from physical symptoms like pain and fatigue to social and emotional aspects of living with rheumatoid arthritis. I even cover the logistics of things like how to track symptoms and how to advocate for yourself in medical appointments. To learn more, go to myarthritis life.net.
[Intermission ends]

Oh, you mentioned your wedding. I know a lot of patients newly diagnosed are like, oh, my gosh, if they’re single, like, how is this gonna affect my dating, my future? Do you mind sharing a little bit of how you met your spouse? 

[00:28:55] Julie: 
Absolutely. So, whenever I was on disability, I was dating a long-term boyfriend and we ended up breaking up when I was on disability. And I thought, ugh, my world is over. Like, how am I gonna find someone. I couldn’t walk, I was on crutches and I wasn’t sure I was ever gonna be able to walk again. And then, I had these issues, I couldn’t even work. And I’m like, how am I gonna find somebody? And I ended up going on all the dating sites and match.com and, I just remember back then trying to put on this front of who I used to be instead of who I was right in that moment. Oh, I used to work for this IT consulting company. I used to travel the world. I used to do this and used to do that. And, I’d meet all these people and a lot of them would say, “Oh, you’re on disability. I don’t want to deal with it.” And it was crushing at that time, but it was better in the end, right. 

But I remember meeting my now husband, it was like a month after I actually had gotten my stem cell procedure. And he’s the first one that called me out on it. He was like, you talk as if you used to be great. And the person that I see is really great. Like, everything you’re doing is so impactful. And actually I wrote a whole blog about it ’cause he was like, oh, man, like you know all your advocacy work, you’re always doing all these really cool things. Like, why do you talk about that like you used to be great? And it was really then that I was like, wow. You’re right. Like, I keep putting on this front that you can still live this great life, but in my back of my mind, I kept thinking that I used to be great trying to find a partner to do life with. So, it was just really — I’m kinda get chills thinking about it ’cause it, he just, he was the first person that really understood it and made me feel worthy of all of this. Yeah. So, we ended up getting married. We have two kids now. And it was a journey to find someone. But he called me out on my BS. 

[00:30:56] Cheryl:
That is so important too, because I think that one of the dynamics that can come up in a relationship where one partner has a disability or a health condition is that you can get this eggshells phenomenon where the person doesn’t feel like comfortable, the person who’s not having a health condition feels like, oh, I can’t say anything, or I don’t wanna, I don’t wanna call him out. And I’ve had the same thing with my husband at times. I started having panic attacks as well after I’d been in this car accident and I was going to therapy and all that was helpful. But at a certain point he was like — I was having these panic attacks, like, getting on the airplane and he was like, “Well, you have a choice. You don’t have to come,” and it was like that, I needed that tough love to be like, he’s like literally like, “Just come or don’t come.” Sometimes you really do need that. And then, how did your condition affect your, like, family planning, just those conversations with your spouse?

[00:31:47] Julie: 
Yeah. So, well, whenever I was on disability, I kept thinking, how am I gonna have kids? Like, how’s this gonna happen? Could I even have kids? And actually, the first medication, the first biologic I was on, I didn’t understand them at the time. I didn’t know all of the things that could happen on a biologic. And I remember my dad asking the doctor, like, is this gonna impact her having family in the future? And I really appreciate him asking that in hindsight, because I wasn’t thinking about that at the time. So, these are all concerns that I had. Well. So, I meet Josh, and Josh is in the army — and Josh is my husband. And he’s in the Army. And he was actually getting deployed and we were still dating. And he left on a Friday and a week and a half later, I found out I was pregnant. Like, shocker, wasn’t planning this at all, right. So, I’m excited, but I’m nervous. Like, what? He’s leaving for a year to be deployed. 

So, he ended up — they had three or four days before they were actually gonna leave the country. He came home, we got married at the courthouse. We got to have a sonogram, like an early sonogram, and then he left. So, he left. And I’m by myself. I’m newly pregnant. This was not in the plan and I’m like, oh, my God. So, many emotions, right? Okay, I didn’t even think I was getting married, but now I’m like newly married. He is gone. But also, am I gonna even be able to be healthy enough to do this? Like, I had just gotten back to working. I had just gotten back to life. So, honestly, I hate to admit this, but for the first few months I wasn’t really even that excited ’cause I was more nervous. Am I gonna be able to breastfeed? Or am I gonna be on medication and breastfeeding? Is the baby gonna have the medication? Like, so many different things. So, if you actually go and look at the time I was writing for Health Central, and I’m pretty sure I wrote a million articles about that because it was just overwhelming.

[00:33:48] Cheryl:
Well, and the, research — the research has exploded in the safety of medications for pregnancy and breastfeeding. But even yet, my son’s seven years old and I remember back then they were like, ooh, get off your biologics. But now, stay on your biologics.

[00:34:02] Julie: 
Exactly. Yeah, it’s changed so much. And at that time, I was on Otezla and I had signed up for a mother-to-baby study to give my data so that other people, whoever are in that situation in the future, could know, hey, this is safe, or you know. But anyway, yeah, there were so many different emotions and I feel like it was a good thing. ‘Cause I feel had I had all those thoughts before I actually got pregnant, I probably would’ve psyched myself out from actually going and doing it. But since I was thrown into it, it helped me process it more. So, by the time I had her, Emmy, I was definitely more on board with my feelings. 

I was like, you know what, this is gonna play out the way it plays out and if I have to take medication, I’m gonna take medication. And there’s so many other women that do it. During that time, I started connecting more on the pregnancy, mom life in chronic illness. And again, going and talking to other patients. There’s so many out there who are talking about it, which is fantastic. And they made me feel so much more comfortable. So, by the time my second one came around, I still had that worry, but it was definitely like, okay, I got through, I did it the first time. I can do this again. And of course, I have bad days, but I would have bad days even if I didn’t have them.

[00:35:28] Cheryl:
That’s what I remind myself too. Did your condition go, did your PsA go into remission at all during pregnancy? 

[00:35:36] Julie: 
So, my first one, my PsA did, except for in the first trimester, I had more psoriasis than I ever had before, but that was it. My joints felt amazing, like it was great. So, after she, after I had my first, probably a year later, I started really feeling crappy again. And I was like, oh, man, I either need — ’cause I had stopped my medication at that point. I was like, I’m either gonna have to start on another medication or I’ll just get pregnant again and it’ll go away. So, I kept trying and I wasn’t getting pregnant and I thought, okay. I gave myself — I’m like, if I’m not pregnant by January, I’m gonna have to get on something. ‘Cause I was really feeling awful, but I got pregnant in December, so I was like, okay, cool, yes. 

Second pregnancy. No, I did not go into remission. My joints hurt. Like, it was definitely a different scenario, but it was manageable. That’s the thing that stinks whenever you’re pregnant is you can’t be taking like pain meds and all of these other things. So, whenever I would have a bad day, I literally would just rest and take the day off of work and just let my body do its thing. But yeah, it was two different experiences.

[00:36:47] Cheryl:
When you are in the process of getting pregnant, if your disease isn’t well-controlled, you’re less likely to go into remission during pregnancy. So, these decisions are just, they’re so difficult. Yeah. Do you have any tips and tricks that helped you just manage, like, in the postpartum period or the baby period? ‘Cause that’s the part that was really hard for me. just everything from lifting the baby. And so, of course as an occupational therapist, I’m all about the life hacks. 

[00:37:15] Julie: 
Well, I think the biggest thing is being able to ask for help. It seems like such a, like, yeah, just ask for help. But I think it’s harder than that. But I’m so lucky that my mom is just such a phenomenal resource for me. She’s always here; she’s always helping me. So, I rely on her a lot. And actually my sister-in-law has ankylosing spondylitis, so she totally gets it. And she, yeah, whenever she had her babies, she had a really bad flare up, so she’ll come and visit and she helps as well. So, doing that and just having things like planned out. 

So, having my diaper stations and like the bottles all set up and just like everything. So, if I’m not feeling well, I can just go and run and grab them and I don’t have to spend extra time doing things like that. And when it comes to myself, just realizing that I need to pace myself and I’d like to do it all, but I realized that I can’t do it all. So, at the end of the day, it’s a lot of meditation and just like focusing, Julie, you’re doing the best that you can. 

[00:38:28] Cheryl:
And yeah, it’s so important. There’s, yeah, there’s something about autoimmune warriors that I’ve noticed. We tend to be like ambitious kind of almost perfectionistic a lot of times. Maybe that’s just a — I don’t know. Maybe that’s just the people I know. It’s almost like these diseases are here to sometimes to remind us that you are, even if I was totally a hundred percent able-bodied, I remind myself all the time, like, you would still need to sleep. You would still need to rest. Literally we only have 24 hours a day ’cause sometimes it’s easy to get in that trap of, oh, I’d be a better mom if I wasn’t, if I didn’t have this. So, do you ever struggle with those guilty thoughts? 

[00:39:05] Julie: 

Yes, a hundred percent. And so, I’ve always been into, meditation wise. I say always the — since 2013 when I really started like managing my condition and I always used Headspace, the app. But recently, I’ve been using this Mindful Mamas app and it’s been so helpful because every meditation is just about motherhood and like getting rid of those thoughts. And that’s actually been super, super helpful for me because that is something that I’ve definitely been struggling with. 

[00:39:38] Cheryl:
I have one child, so I’ve heard and witnessed in my friend group, the transition from one to two is a lot. 

[00:39:47] Julie: 
It was a lot. I will say I’ve been blessed. Wes, my second is so chill. At least now he’s eight months. So, we’ll see what happens once he starts running around here. But he has made it a lot easier ’cause he has, he just is just like going with the flow and will sit there and just smiles, which is so nice.

[00:40:06] Cheryl:
Oh, that’s so sweet. Oh, my gosh. Is there anything else you wanted to say about just your journey with pregnancy and motherhood with PsA?

[00:40:17] Julie: 
Whenever I think about the stereotypical mom, it’s like, oh, she has snacks in her bag and she has things planned out. And I feel like being able to tap into that and plan ahead does really help in these situations. So, just always knowing there are some frozen dinners in the freezer for when I’m feeling crappy or having some extra coloring books or something that are new that whenever I’m not feeling well I can pull out and get them just like sitting by themselves. I feel like being on top of those things, planning ahead, kind of knowing your limits and your triggers are so, so important. So, like I now, I’m so glad that I did the work back before this to know my limitations, because that helps me on a daily basis to be able to show up and be here. 

[00:41:10] Cheryl:
I love that. And yeah, having that plan ahead of time, I think for me too, deescalates those thoughts when you’re like, oh, no, what if it gets worse? Or what if I have a huge flare? You’re like, oh, I already prepared for that. So, yep. Yeah, it deescalates. That’s awesome. And then, I always like to ask, do you have any advice for newly diagnosed patience?

[00:41:30] Julie: 
Yes. My biggest tip that I always tell people, is just empower yourself and be a driver in your health. In the beginning, I relied so much on the doctors to tell me what to do, where to go, what to take. And, I’m not saying that we shouldn’t rely on them because they are a wealth of knowledge, but we need to take responsibility for our health, and be a partner with them. So, do your research, connect with other patients, see what they’re doing. What they’re doing might not totally correlate to that what’s gonna be your solution. But that’s information you can go back and talk to your doctor about. So, I think just the biggest piece of advice is empower yourself and be a driver in your health.

[00:42:16] Cheryl:
I love that. And it really goes along with the model of in occupational therapy and in healthcare we call it like self-management. Like, anyone with a chronic illness is like the manager of their health experience, right? Like, you’re the CEO. Like, your doctor is somebody you see 20-minutes every few months. The CEO does not spend only 20-minutes. You’re the CEO living with it 24/7. 

So, finding that balance. I think one of the things that I get, I see patients get really overwhelmed with when they try to though do their own research is how do you evaluate which sources are high quality versus not. ‘Cause the downside of social media proliferation, and not just social media, but it’s just the ability to connect to others online has been unfortunately people who pray on the vulnerable with miracle cure that don’t work. Do you have any advice on that or is it just awareness is the first step? 

[00:43:12] Julie: 
Well, no, and it’s a great question and I feel like this comes up so, so often. I always tell people, don’t just go and find someone random and then take what they say as Bible. If you’re, if you see them online, follow them. Learn their story, see what they’re posting, how they’re connecting with other people. And I feel like you can then get a really good gut instinct of if this person legit or not. And then, don’t just take what they’re doing and just go incorporate it with into your life. Go talk to your doctor about it. Because they can then kind of to flesh out knowing your specific case. Is that gonna help you? Is that not gonna help you? 

So, in doing your research, I think you have to say, okay, I talked to this person and I got this story, what other pieces of the puzzle can I get as well. Now with Facebook groups, there’s so many people like chiming in and giving their opinion and sharing their experience that I feel like you can get a really well-rounded experience. ‘Cause someone will be like, oh, I took this miracle drug, but then 10 people will be like, yeah, that’s scam. That’s a scam. So, I feel like Facebook groups are really good ’cause there’s a lot of conversation happening there. 

[00:44:25] Cheryl:
Yeah. The only caveat I add to Facebook groups is to remember that there’s a self-selected population that goes into them. ‘Cause like when I was in medicated remission, I was on Enbrel and methotrexate and in total medicated remission for five years. Like, I had zero symptoms of rheumatoid arthritis. And so, I didn’t go in a group because I didn’t, I wasn’t needing it. I didn’t need to process it. I was just doing fine. So, remembering that those, it’s a selection of people who I would say arguably, they’re usually the ones that are dealing with more challenges from their disease. Whether that’s the right — something’s not working great for them. But at the same time, you’re right that having access to the rich variety of stories so we can see the people who are able to, these people use the diet. These people went on keto, these people did vegan, and it reminds you that there is no one way. 

And I love seeing when people weed out the miracle things too, because you’re like, okay, good. I really loved your point about talking to your doctor about why certain things work for certain people ’cause like they can explain to you like, well, okay. The reason this person was able to control their disease with only, let’s say, only Sulfasalazine or something is that like their disease was mild and like yours is severe, so you might need more severe. And just getting that conversation going, even though you might have the same diagnosis as someone else, you might have a totally different severity. I just, I love talking about this because it’s really, most patients like primary source of information is other patients online. So, yeah. So, is there anything else you wanted to say before we wrap up?

[00:46:04] Julie: 
If you’re dealing with an autoimmune arthritis, any autoimmune condition, just know you’re not alone. There are thousands of us out there and, you know, some days the world seems so tough and hard, but that’s just one day. And just because you have a bad day doesn’t mean you have a bad life. And when you really zoom out and look at it in totality, pick those small moments and small wins for your day to really focus your energy on. And you can still live that amazing life that you want to. 

[00:46:37] Cheryl:
I love that. And I love the name of your website. And so, I’ll definitely be including all the links you mentioned to Mindful Mamas, I really wanna check that out, and WEGO Health and I’ll include in links to your blog of course in the show notes. But thank you so much for your time. I can’t wait to share this with everyone. 

[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 prerecorded course on your own, or you can take the course along with a support group. Learn more at the link of my show notes, or you can always go to www.myarthritislife.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 you know 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 wanna 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.