Episode Stefanie
Blog, Patient Stories, Podcast

Adapting is a Superpower: Stefanie’s Journey as a Mom with RA, Coach and Nurse Practitioner

November 23, 2020
47 min read
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On Episode 19 of the Arthritis Life Podcast, Stefanie shares her unique journey as a patient, healthcare provider, coach and mom in this heartfelt episode. Both Cheryl and Stefanie share why “adapting” your daily tasks, as well as emotionally adapting to your disease, are important superpowers when pursuing a full life with this disease.

Stefanie is the Rheumatoid Arthritis Coach. She’s a mother, teacher, volunteer, Family Nurse Practitioner, and also has rheumatoid arthritis. She was diagnosed about six years ago after the birth of her  first child. As a medical professional with over ten years of experience at that time, she was completely lost and felt like her world was shattered. The day she was diagnosed she cried for 10 minutes in the car, and then decided: “I’m not only going to take control of MY disease, but I want to help others to do the same!”

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 learning effective 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. 

Links:

Here’s the show breakdown:

  • 1:00 – Introduction to Stephanie
  • 2:05 – How Stephanie’s background in medicine helped her figure out her Rheumatoid Arthritis diagnosis. 
  • 4:18- How Stephanie took control of her diagnosis and created the 1st arthritis support group in Las Vegas, Nevada through the Arthritis Foundation. 
  • 7:13 – Stephanie’s experience working in critical care (ICU – Intensive Care Unit) as a nurse at the time of her diagnosis and afterwards
  • 9:20 – Stephanie’s choice to leave the ICU setting due to her RA diagnosis
  • 10:17 – Stephanie’s advice to people with RA who are conflicted about whether to switch careers: don’t be afraid to change paths due to your condition, particularly if it helps you manage your stress better.
  • 13:25 – Cheryl & Stefanie discuss the importance of patient education.
  • 14:35 – Cheryl & Stefanie discuss how having RA changed how they practice as health providers: learning to listen better and be more present.
  • 18:50 – Stephanie’s most important tool to manage her RA on a daily basis: the ability to adapt (it’s a super power)!
  • 20:25 – Examples of how Stefanie adapts her daily routines to match her condition and abilities: pants with buttons versus pants without buttons, bar soap versus pump soap, types of cans, and more examples.
  • 24:30 – Cheryl’s examples of how occupational therapists help patients with arthritis adapt their daily routines to what works best for each individual. 
  • 28:09 – Stefanie’s family history of autoimmune diseases.
  • 29:30 – Stephanie’s first big RA flare after her first child was born and her experience with pregnancy and postpartum with her second child was born.
  • 30:35 – Stefanie’s difficulties with breastfeeding after her first pregnancy, versus her second pregnancy where she knew she couldn’t breastfeed due to medications.
  • 31:47 – Cheryl’s experience with chronic mastitis infections while breastfeeding and her views on infant feeding: fed is best! 
  • 34:15 – How Stefanie manages the demands of parenting with young kids: honest communication with your family, and some adaptations like a ramp for her children to get into their own bed.
  • 40:00 – Stefanie’s journey to creating her RA Coaching program
  • 42:30 – More details about Stephanie’s Rheumatoid Arthritis Coach program: diet, symptoms, and medications, individualized medical chart reviews for Rheumatoid Arthritis patients. 
  • 46:50 – Stefanie’s reflections on the importance of individualized care. 

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.   

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 everyone. Welcome to the Arthritis Life Podcast. I’m so excited. Today, I have Stefanie, who’s The Rheumatoid Arthritis Coach. Hi, Stefanie! Welcome to the podcast. 

[00:02:50] Stefanie:
Hi, Cheryl. Thank you for having me. 

[00:02:51] Cheryl:
Yeah. So, just to get started, can you tell us a little bit about yourself, like your age, and what’s your relationship to rheumatoid arthritis?

[00:03:02] Stefanie:
Sure. My name is Stefanie. I’m a rheumatoid arthritis coach, just like you. I’m a mother, teacher, volunteer. I’m also a family nurse practitioner, and I also have rheumatoid arthritis. 

[00:03:14] Cheryl:
And where are you in the world right now? 

[00:03:17] Stefanie:
I’m located in Las Vegas, Nevada. 

[00:03:19] Cheryl:
And how old are your kids, if you don’t mind me asking?

[00:03:23] Stefanie:
So, I do have little kids. There’s, right now, they’re six and three. 

[00:03:27] Cheryl:
Great. So, we are, yeah, we’re similar. ‘Cause I also have a 6-year-old. No littler than that. But yeah, that’s a lot. I wanna ask you so many questions about your family, but first I would love to hear a little bit about your journey with rheumatoid arthritis. When did you get diagnosed and what was your response to the diagnosis? 

[00:03:51] Stefanie:
Sure. So, I was diagnosed after the birth of my first child, which is very common in people with autoimmune diseases, especially rheumatoid arthritis. I brought my first baby home and out of the blue, I couldn’t use my left thumb or even hold my baby anymore because my hands were so stiff and immobile. I had the bilateral wrist pain. It was so bad I couldn’t feed my baby, hold my baby, change his diapers. It was very limiting. At that time — I, at that time, I had already been in medicine for over 10 years. And I had gone to multiple physicians with these complaints and concerns without any answers. Everything kept coming back normal. And eventually I did my own reading, went into my own old textbooks, went into my own research, and I actually ordered my own diagnostic labs. And then, I brought the results into my primary who reviewed them with me, and we both agreed that the markers for rheumatoid arthritis were there and that I needed to see a rheumatologist. 

[00:05:03] Cheryl:
Oh, my gosh. I think you’re the first person I’ve met who actually not just self-diagnosed in terms of reading about the symptoms and thinking that they had it, but you actually ordered your own labs. That’s incredible. Yeah, I have such a mixed reaction to that. ‘Cause on the one hand, I’m amazed that you had the gumption to do that; but on the other hand, I get frustrated that your other providers didn’t do it for you, that you had to do it yourself, but you know?

[00:05:35] Stefanie:
Yeah. In their defense because, yeah, I did — I did feel like they all cared and they all tried and they all did the best they could. A new mom does have a lot going on and it was a much more likely outcome that I was having postpartum depression or psychosomatic manifestations of depression. Carpal tunnel, right? Carpal tunnel’s really common in pregnancy and after birth. So, I don’t hold any grudges. I’m not angry, but that’s how I got to my diagnosis was I actually did order my own labs. So, once I went to see my primary, she referred me to a rheumatologist. I, just like everybody else, despite me working in medicine, waited I believe four months to see her. She was wonderful and I actually still see her today. 

She told me I do have rheumatoid arthritis. I walked out of the office and I sat in my car for about 10 minutes and cried. And after about 10 minutes, I thought, well, this is not okay. And I said, I’m gonna not only take control of my diagnosis, but I’m gonna help other people do this too. And I started getting out there looking at resources and therapies and whatever I could get my hands on, honestly, for patients, for myself as a patient. And in the city where I lived, there was almost nothing. There were no support groups. There were no events; there were no activities. So, about a year into my diagnosis, I started the first local arthritis support group through the Arthritis Foundation. 

So, from there, I had the support group for about three years, and through the support group, I carried and delivered my second child. So, pregnancy and childbirth is a very sensitive issue in any women with autoimmunity. So, I think it was a very interesting experience for not only myself, but the people that attended the support group with my hands full, with two small children. I had to hand the support group over to two wonderful women who were very graciously accepting of the leadership position and I had to step down. And that took us to right about February of this year when I emailed back the Arthritis Foundation and said, hey, I wanna get back in. 

It’s 2020, so depending on where you all live, our shutdown was March 17th of this year. So, we had this big shutdown and everything in person was closed, so I was no longer in line to restart the support group. So, in March I decided everything else is online now that we’re all shut down. And I opened a complete virtual program and it’s been amazing. So, very long story short, that’s been my journey and that’s what I do with it. 

[00:08:45] Cheryl:
That’s so great. Another way that we’re like RA twins here, because I also started my program in March as well. I am curious, what setting were you working in as a nurse practitioner prior to your diagnosis? 

[00:09:03] Stefanie:
So, when I was first diagnosed, I was actually in critical care. So, nurse practitioners, we’re nurses first. Yeah. And so, I was a critical care nurse for about five years. And at this point, when I was officially diagnosed, I had been a nurse practitioner in critical care for an additional five years. So, all of my experience was in critical care. 

[00:09:25] Cheryl:
And then, just so for people in the audience who may not know, is that the same thing as ICU or intensive care units? 

[00:09:32] Stefanie:
Yes. Okay. It’s the same thing as ICU. 

[00:09:34] Cheryl:
Yeah. So, and that’s not really a low stress job, I would imagine. 

[00:09:39] Stefanie:
It’s not low stress. And the very interesting thing about it was, so in the ICU, many people are on breathing machines. And they have big IVs called central lines, and they have sometimes chest tubes. And for any of you who have experienced this either firsthand or with a family member, there’s a lot of tubes. And with those tubes, you actually need quite a bit of hand dexterity. 

[00:10:07] Cheryl:
Oh, yes, I can imagine.  

[00:10:10] Stefanie:
Yeah. So, the year that I left ICU was just the, very shortly, year after I was diagnosed because I simply couldn’t keep up with the procedures and the 14-hours on our feet and the, just walking a hospital is you walk miles a day working in a hospital. The only career that walks more as a waitress, right? Like a server. 

[00:10:34] Cheryl:
Wow. Yeah. Yeah. 

[00:10:36] Stefanie:
I, when I had that job in the ICU, our schedule was actually seven days on, seven days off. So, we would work for seven days and then the very little bit of sleep we did get, we were on call, so we would get intermittently disturbed during our sleep. So, we literally worked for seven days straight and then had seven days off and it was obviously not a compatible lifestyle with RA because as we all know, autoimmunity is, it is very important that you get good sleep, high quality, sleep enough, sleep, all of that. 

And so, I actually left the only medical specialty that I knew at the time. I’d been there almost 11 years total. My whole career, my whole adult life, I had worked in the ICU and I left it because of the disease. And I remember at the time thinking my life was over, I can’t believe I have to do this, all of these same feelings that everybody has and communicates all the time about, the fears and the anxiety about having to change careers due to a chronic illness and all the other things that go with it. 

But I have to tell you, it’s only made me better because I got out there, and I pushed my limits, and I learned new skills, and I have been in so many different specialties now that I have so much more medical experience and knowledge, and I’m able to help even more people. And for anybody who is afraid of losing their job or changing jobs due to a chronic illness, I would really say just go for it. Just jump in. Stay positive, stay open-minded, and I really think it’ll take you somewhere amazing because it really did for me. 

[00:12:21] Cheryl:
That’s such a great point. ‘Cause yeah, I know that there are many patients who are inspired by their own experiences as a patient and want to become a provider, but they often worry that, oh, I’m not gonna be able to physically cope. And so, I think one of the keys that I found is that choosing a healthcare career that is really flexible, where you can do lots of different kinds of settings. For example, if you’re a massage therapist, no matter what, almost no matter what I would imagine, you’re using your hands, right? So, there’s not really a lot of flexibility with your body. Whereas for nursing or for something like occupational therapy, you can work in a highly physically demanding setting. 

Like in your case, like an ICU or like I know friends who work in a NICU as an occupational therapist, like neonatal intensive care with little tiny babies, but they’re doing a lot of those tiny little small motor things where they’re getting all those finicky snaps and stuff onto the babies. And so, you could choose to do something like that or you could choose a more, in my case, I worked in a school, an elementary school, and that was actually a lot easier on my body than working in like a hospital setting. So, long, long story short again is knowing or choosing a career that you can be flexible in is, has been really important for me. And so, it’s great to hear you say that as well. 

[00:13:47] Stefanie:
Yes, it’s really important that we change our mindset, right? You can’t change your job or your career or the setting where you work, but you can change how you adapt within your career, or finding a new career or finding adaptations within that career. I have a very good friend who has rheumatoid arthritis. She’s also a type one insulin dependent diabetic. And she was actually a nurse in a very busy labor and delivery floor, which is very busy and very demanding. And recently she came to terms saying, I just, I can’t keep up with this physical activity anymore. And she became a diabetic educator at our clinic where she sits most of the day and talks to people who are newly diagnosed with diabetes. And it has completely changed her life. Her rheumatoid arthritis and of course her diabetes are better managed. She sleeps better. It’s lower stress. She has incredibly lower pain than she did previously. It’s just been really great. So, I think it’s really important to always remember that you can’t change your job, you can only change you and your attitude going into it is everything. 

[00:15:01] Cheryl:
That’s such a beautiful example. I remember I’d had rheumatoid arthritis for almost 18 years, and when I was pregnant I got gestational diabetes. And so, I remember that first appointment with the diabetes educator and I remember thinking, why isn’t there that role for rheumatoid arthritis? Like, why isn’t there, automatically when you get diagnosed with, in any sort of inflammatory arthritis, why don’t you get an appointment with an educator that’s going to help you navigate it? ‘Cause it’s so, such a big massive life change. And then, you’re just left, like you said, you’re left in the parking lot, metaphorically and physically, to sort through it all. So, that’s my motivation for forming Arthritis Life, and I know your motivation too for being a rheumatoid arthritis coach is just giving more support and resources to people who just really need it.

[00:15:54] Stefanie:
I have to say, when I started in medicine, for example, diabetic education was a very new thing and everybody wasn’t getting it like they are today. Now you get diagnosed with diabetes, you get referred to a diabetic educator, it’s covered under insurance, et cetera, et cetera. So, and I am so excited to pave the way for this educational pathway and this resource, and I can’t wait to see where this takes us all in the future.

[00:16:20] Cheryl:
Yeah. I’m curious, when you became like a rheumatoid arthritis patient, did it change how you see your role as a provider? Did you — I know a lot of times when people become a patient after being a provider, they’re like, oh, my gosh, I had all these epiphanies of like ways that the systems could be better or — do you know what I’m talking about?

[00:16:42] Stefanie:
Yes. Oh, 100%. I always tried my best to be conscientious and pay attention, you know. Just simple, just, human kindness, just paying attention. And after I was diagnosed, it was even more important to me to be a good listener. I don’t wanna say that I wasn’t a good listener before, but now I’m a better listener and I’m better at follow up questions and it’s really important as a provider that when I do see patients, because I do still practice, that when I do see patients, it’s classic, right? You don’t look sick, but they say they have an 8 out of 10, 9 out of 10, 10 out of 10 pain. They need disability forms signed. They are requesting a handicapped parking placard, right? All of these things, but they look fine, right? We all hear this. It’s all over social media, it’s all over everything. The ‘You don’t look sick’, right? And so, being a patient and learning to deal with the chronic disease and the chronic pain while still looking fine has been my own challenge. And I think that I’ve very easily been able to extend that now to patients where I just try to be a better listener. 

[00:18:03] Cheryl:
The only thing I would add to that is I think I’ve learned the importance of the soft skills as well, like especially when I was a new practitioner, as an occupational therapist, I would feel all this pressure to, like, have the right answers and be able to solve, quote unquote, ‘help people solve the problems’. Then, but when I would re reflect back on my life as a patient, I would realize that those, quote unquote, ‘soft skills’ like you’re talking about, being a good listener, being kind and compassionate, those are the things that make a huge difference in the patient’s life as well. Because unfortunately, there aren’t ways to solve the problems every time, but if you can help the person at least feel like they’re being supported and they’re being embraced and they’re just being looked at as an actual human being, not just as Patient Number 4 today. And not that you would ever have done that before, but it really brings that home, that humanity home, when you’ve been in that vulnerable position as a patient.

[00:19:04] Stefanie:
I couldn’t agree more. And when clients that I’m coaching ask me how many clients I coach, my answer is always, “One.” It’s you, and it’s the one I’m working with at the time, and I think that’s where I have changed as a person, as a provider, and as a coach, that it’s so important to treat each person individually, and I not try to fit everybody in a box. 

[00:19:29] Cheryl:
That’s giving me chills right now. Yeah. This is — you’re fully present. And that’s another thing, mindfulness is something for ways to manage my stress as a chronic illness patient. And when I’ve learned, I’d never realized how much of my life I spent just on fast forward almost, or always thinking about the future and what am I gonna do for dinner? What — am I gonna do this? And da, da, dah. And not being like totally in the present moment. And when I learned that was really supposed to be just a coping strategy for pain and chronic illness. And then, I was like, wait, this is really helpful for the, my whole life, for my role as an OT and my role as a wife and a mom. And yeah, being like you talked about, really being present for another human being, it’s like one of the greatest gifts we can give someone else, and ourselves. 

[00:20:19] Stefanie:
I agree. It’s amazing and it’s so important to be present. And like you said, it’s very important to me and it’s some, it’s one way that I’ve definitely changed from being a medical provider and now a patient.

[00:20:33] Cheryl:
Yeah. And I’m curious, you know, what are some of the tools in your kind of day-to-day toolbox for managing your rheumatoid arthritis? Either it doesn’t have to be like literal physical tools, like I have a jar opener, right? Although I love talking about that stuff too. But also the kind of stress management, mental tools as well.

[00:20:54] Stefanie:
I have found that my strongest, I call it my mental superpower, is adapting. And I think that with rheumatoid arthritis, as I’ve said multiple times already, you cannot change the disease. All you can change is your attitude about it. And the sooner that we realize that, and the sooner that we learn how to do that, the better off we will be all around; physically, mentally, emotionally, relationships, everything. So, the very first thing that everybody does is they buy things to add to their arsenal, right, to their tool belt, whether it’s jar openers, supplements, fresh kale, right? We’ve all been there. You get a box from Amazon, it has 20 supplements. You can’t choke half them down because they taste terrible. We’ve all been there, right? So, of course that was the first thing I did, and then I realized that I didn’t need to add things to my arsenal, but I really just needed to change the way I was already doing things, the products I was already using, the methods I was using, and my mindset about those processes and items. 

Number one, I always tell everybody, figure out what is stressing you out and throw it away, buy a new one, and find one that works. My first thing that went when I was first diagnosed was pants with buttons. And I’m actually wearing a pair of jeans today. I sent you a picture before we recorded. And I have a picture of my waistline, which was a very, took a lot of courage to photograph my waistline. But I’m wearing jeans today, and so if you ever see me in jeans or pants with a button, it means I’m having a great day. But I haven’t worn jeans in nine months. Luckily, my job is either business casual or scrubs. So, I wear a lot of dresses and I found that dresses without zippers or buttons and scrubs, of course, were always very easy. 

So, I would say six months into my diagnosis, I just stopped buying pants with buttons. And I’ll tell you, that changed my life so much. And people kind of joke because up until recently, I haven’t been very open about having RA and people would say, “Oh, it’s the girl with all the dresses.” Or I’ve had blonder hair in the past, and people say, “Oh, it’s Goldilocks with the dresses.” And it became a joke in passing that Stefanie wears a lot of dresses and little did they know that I was really just nailing my mental superpower of adapting to this disease. I just couldn’t button pants. 

[00:23:44] Cheryl:
Oh, my gosh. What a, like, concrete example. That’s such a specific, vivid example.

[00:23:51] Stefanie:
So, what I would say is my biggest tool or advice is. A lot of people reach for the zipper assisters, or the bracelet helpers, or the button helpers, or all of these tools, which are great, and they have a place in our world and in our lives, one hundred percent. Sometimes you need to just not buy those pants. It’s actually, I feel the same way with a lot of food products or especially beauty products. For example, when I buy canned goods now I only buy pull top cans. And my husband knows it’s just the rule. Even if it’s double the price, it doesn’t matter, because operating a can opener was so stressful. It was so mind consuming and emotional for me that several years ago I just said, we just have to buy pull top cans. I don’t care what it is. 

And I found too, with beauty products, now I only buy the larger, whatever size it is with the pump, and everything I have has a pump on it now. If something is causing me emotional stress and it can be related to my RA and it can be changed, I do. So, I would say probably about two years ago, I used to use bar soap in the shower, and I was dropping it all the time because my hand grabs, my hand grabs were getting weaker and stiffer. And despite anybody’s recommendation or what anybody thinks, I switched to a, I call it a poofa. I know that’s not what it’s called, but I switched to a poofa and liquid soap with a pump and I’m just a much happier human being. So, I would say that the tools in my tool belt are really just about adapting and knowing that it’s okay, that if something doesn’t work for you, that you replace it if you can. And I think that the easy fixes are what everybody should really start with. 

[00:25:56] Cheryl:
That’s so perfect. I should send you my little YouTube video where I talk all about pump bottles versus squeeze bottles and why pumps are better. I was like, no one else is gonna get as excited about this as I am, but now I found you, so this is perfect.  

[00:26:11] Stefanie:
Yes, 100%, pumps are always better. 

[00:26:14] Cheryl:
Such a great example. It’s funny because yeah, as occupational therapists, yeah, we often advocate for using the tools, but we also, or advocate for adapting what you currently have. And I’ve ended up making a lot of videos and fun demos of different products. But yeah, at the end of the day, the best solution is just the one that works for you, right? So, if you’re the kind of person that doesn’t want like a bunch of gadgets sitting in a drawer, then definitely adapt. And so, I think that’s such a great point. 

[00:26:43] Stefanie:
I’m so respectful of occupational therapists and I think what you all do is so skilled and so admirable and so necessary, and I definitely think tools are necessary. And with that being said, just to be completely out there, I have jar openers in probably two jar openers in every room of my house, including the garage and both of our vehicles, because I can’t tell you how many times my kids will buy a Gatorade at 7/11 on our way to gymnastics, and I cannot open it, and I was so tired of having to ask other people, can you open this? Can you open this? One day, I just bought like 20 of ’em on eBay, you know they send you the big box? So, I have them everywhere and my kids know to not take ’em. So, there are definitely tools that I use for sure, 100%, every day. But definitely there are certain products or items that I just buy different versions or even completely avoid.

[00:27:46] Cheryl:
But I’m totally the same. Again, it’s all just practical. What are you actually going to use, what are you going to — we talk in occupational therapy about compensatory versus remedial strategies, like, compensatory strategies are the ones that you compensate for the fact that you can’t do something. So, using the jar opener. And then, remedial would be like remediating the underlying problems. So, you don’t need to compensate. So, it could be if it’s hand strength, you strengthen your hand so you can open the jar. We always are thinking about both items. Not just, a myopic, like we have to use gadgets ’cause we’re OTs, so it’s all good. 

Yeah. And using that patient-centered lens again, like we might be excited about an aid, but it’s like the classic thing from my work in pediatrics was, oh, I have a pencil grip that the kid should use because they need to have a better grip grasp on their pencil. But if an 11-year-old in sixth grade doesn’t want to use a pencil grip ’cause they don’t wanna stand out from their peers, then it’s not a helpful tool ’cause they’re not gonna use it. So, a tool’s only helpful if people use it. 

[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 myarthritislife.net. 

[Intermission ends]

Switching gears just a little bit, I wanted to make sure I talk a little bit about family life, ’cause it’s such a commonly asked question, “What’s it like to have small kids with rheumatoid arthritis?” I’m actually curious about your first pregnancy, you did not have RA and you developed it or you found out that you had it when your baby was little, but what was your second pregnancy and postpartum period like since you had RA at the time?

[00:29:58] Stefanie:
I was officially diagnosed after the birth of my first, however, looking back, I strongly believe I have had RA since childhood, and my mother actually died very young. Oh, and she had these very vague symptoms, markers, workups, et cetera, that somewhat supported autoimmunity. However, as I said before, the guidelines were just different. We didn’t, for example, we didn’t really work up Hashimoto’s thyroiditis 10, 15, 20 years ago. We didn’t really work up or look at things like lupus 10, 20, 30 years ago with mild or even moderate complaints of arthralgia, which is joint pain. Or my mother had a, she had very bad coronary artery disease very young. She had her first heart attack at 40. Okay. 

[00:30:51] Cheryl:
Wow. 

[00:30:52] Stefanie:
Yeah. Like, looking back, it’s definitely genetic. My sisters have autoimmune diseases. Anyway, so my point is that I’m pretty sure I’ve had it my whole life, but it really flared after my first child and as we all know, hormones are a big — they play a big role in all autoimmunity. And so, I’m sure that’s what really triggered it and really pushed me into that flare where I was just completely disabled. So, the three years between my children, I dedicated my life to taking very good care of my body, and I was the leanest I’d ever been. I am a little overweight and I struggle with my weight, you know, half of the women in America. But I was the leanest I’d ever been in between my two pregnancies. I was very careful about eating. I was very cautious with supplementation. I developed a regular exercise regimen that my joints could handle. 

So, I went into my second pregnancy much more prepared in a much healthier state. With that being said, simply the weight gain of the pregnancy and the fluid retention, it did cause me to flare a little, but I was much more prepared. I had prednisone on hand; I had knowledge. I was just more prepared to what it would be. I have to say, personally, with my first child — this is my silver lining, right? Because in every sad story, I really believe has some silver lining in it. There’s a silver lining to every gray cloud in the sky. So, my first child, I did not have any success breastfeeding. And in some women, this can be detrimental, right? This is very emotional and there’s so much tied in our society to being able to nurse or breastfeed your newborn baby. So, anyway, my first one, I had no success. I didn’t produce any milk. It was very hard because our families were very big proponents of breastfeeding, et cetera, et cetera. 

My point is with my second child, I birthed him and then in the hospital they said, are you going to breastfeed? And I would say, “Nope, I have to start methotrexate.” And I have to say, that was my silver lining because nobody nagged me, nobody judged me. Nobody said, “Why aren’t you breastfeeding?” And it was unfortunately because I had to take a medication for a disease, but it was definitely my silver lining. And so, as far as the second pregnancy, it was fine. Much better than the first, but not perfect. And, again, I had a silver lining even with the gray clouds that I finally got our, like, all these people that just backed off that I couldn’t produce any milk because I had the best excuse in the world. 

[00:33:35] Cheryl:
Oh, you know what? You are touching on one of my soap boxes ’cause I did a lot of research, ’cause I got mastitis four times back-to-back in the first eight weeks of Charlie’s life. So, I weaned it — I was able to produce milk, but I weaned it 10 weeks because of the chronic infections, because I had gone back on my biologic and but it also could just — some people are just prone to mastitis. But long story short, when I did a lot of research, of course everyone makes the best decision for them, but a lot of the outcomes that are attributed to breastfeeding are actually more closely correlated to just maternal socioeconomic status and education levels. And so, it’s just frustrated to think about how people are pressured so much into sacrificing everything about the mom — sacrificing the mom’s sleep, sacrificing the mom’s health — for the baby to get like this perfect substance when really the outcomes actually aren’t, in my opinion, I’m not a nurse practitioner, but the outcomes that I have researched are not strong enough to make that worth it. 

And I wasn’t planning on breastfeeding, even trying, I just did not feel worth it to me because it was so — it’s way more important for the family system standpoint for me to get adequate sleep to be actually present. And I will say at that 10-week mark, I will never forget the first night I actually slept, I didn’t have to wake up and pump around the clock. I was so happy and I felt like I bonded with my child for the first time. And I see there’s so many other parents, they get so myopically focused on breastfeeding and pumping and all this stuff, and they lose out on that bonding and the child needs that too. So, anyway, I aggressively support people in either combo feeding, which is a combination of breastfeeding and donor milk or formula, or just, yeah, doing whatever’s best for the whole picture, not just — yeah, and seeing it as a nutrition issue. 

[00:35:28] Stefanie:
Regardless of what we think or even what’s medically recommended, you have to do what’s right for you and your family.

[00:35:34] Cheryl:
Yeah, beautiful. Beautifully said. And so, now that your kids are bigger, I found, especially like around age two, was about physically the hardest for me with Charlie. He was so big, he was like an always, like, an 80th percentile, 80th percentile baby. And they just wanna be held and they’re like, you’re having to constantly stop them from killing themselves by climbing the furniture and stuff. And so, I’m curious how you manage those demands of parenting now that your kids are a little bit bigger. 

[00:36:08] Stefanie:
Well, first and foremost, when you have rheumatoid arthritis, there’s a lot that goes on in you, right? There’s a lot of emotions and pain and feelings and very subjective complaints, which are, you know, fatigue is very subjective, right? It’s whatever you report. And then, there’s measurable complaints; fevers, or maybe palpable joint pain, right? Maybe your knee is red and hot. The most important thing I found with having a family and having small children is basic communication, which is not specific to RA, but specific to human life. And although I would think that my spouse — you know, my thumb would hurt, right? So, I wouldn’t want to hand wash dishes, and I would think that my spouse was putting this together, but I wouldn’t tell him. And then, we would have a miscommunication about dishes. And then, of course, there would be some sort of bickering about dishes. 

But after learning to communicate better, it’s been much easier and much more fluid. So, there’s just a short list of things that I can do, you know, if I have to. One of them, dishes, first of all, is always tricky if my hands are bad. But another really big one is making beds. And when you have two children and yourself, that’s three plus beds that you have to change and make. And I really struggle with the fitted sheet with my hands, especially my kids have, like, platform beds. They’re raised up, so you have to get on them and it’s a little like labor intensive. 

So, you know, a couple of years ago we just decided that my husband or whoever would always help with the sheets. So, if grandma’s over, sometimes I’ll ask Grandma, “Can you just help me get the fitted sheet on?” And there doesn’t need to be a, “Oh, I have rheumatoid arthritis and my thumb hurts all the time.” And there doesn’t need to be all of this subjective detailed storytelling. I think if you just communicate clearly with your spouse and your family, it’s so much easier. And then, you don’t have all those emotions tied to these things, like making a bed. And so, we’ve really found our rhythm. 

So, I have been extraordinarily creative and I would love to share these on yours and my social media pages and websites. But so, when my youngest was still in diapers but could walk very capably, I purchased a step stool that was like steps. And I built this basically a ramp so he could walk up onto the changing table himself so that I wouldn’t, yes, wouldn’t have to lift him and he could climb back down. And of course I would assist him or hold his hand, I would make sure he wouldn’t fall. But it avoided so much of that hand grasping and lifting and twisting that hurts. 

I was also big on, for lack of a better word, corralling. I would corral the children, right? I had a lot of baby gates. And I actually took — you know the traditional baby gates that expand in a doorway? So, I took a bunch of those to a handyman, lovely young man to just screw on some of those so that I never had to manage that hinge, because that hinge is hard, right? So, my gates just stayed open and then I would just pick them up with a hand or an arm, or even my older son could move them because there wasn’t a tricky hinge. And yes, they could physically move them, right? Like, it wasn’t a literal restraint, but it still gave them the idea to not pass the gate. 

And then, I had all sorts of tips and tricks and tools for diapers and wipes. And long story short is you just have to adapt. You have to do what’s right for you. And the most important thing is to communicate with your friends, family, loved ones, and children. They don’t know what’s hurting. They don’t know what’s going on in your head, and they certainly should not be expected to connect your pain or your emotions with some random chore that is completely unrelated. So, it’s really important that we communicate clearly and just ask for help when we need it, and then help when we can, and things that we can help with. So, that’s what I would say raising young kids with rheumatoid arthritis has been like for me. A lot of adapting, a lot of tools, and a lot of talking. 

[00:40:40] Cheryl:
I love that. Communication is so key. And I feel like — this is Episode 19 of the podcast and that’s come up multiple times in different episodes. And we do have to, as the patient, we are in charge of communicating what physically is going on with us and what we need help with. And exactly like you said, you can’t necessarily expect somebody whose body works a hundred percent perfectly, like I think in the case of my husband, I can’t expect him to break down every activity and understand, like, oh, it hurts my thumb when I do this versus that. I just have to say, hey, he’s not gonna be able to read my mind, although he’s an engineer and he’s pretty good at thinking of adaptations. I will say, for the record, he created a platform or raised up cat litter box thing, container for our cats. That’s actually really, really neat. So, he definitely likes to think of those kind of things. But yeah, there’s just so many little things in the moment, so that’s great. I would — I love the idea of the ramp that goes up to the changing table. Yeah. And so, yeah, maybe tell us a little more about your experiences forming the Rheumatoid Arthritis Coach Program. 

[00:41:49] Stefanie:
Sure. So, when I was diagnosed like everyone else, I started on the prednisone taper, and then hydroxychloroquine, and then I had to have the discussion with my rheumatologist that I wanted a second baby, which of course changes everything, right. So, I then had to have the discussion on, for me, the prednisone and hydroxychloroquine was not enough, and then I had a second baby, and then we had to have the discussion on methotrexate, versus Leflunamide, versus Humira, et cetera, et cetera. We’ve all been there. And I tried several medications in the process and I had vision changes with one. I lost almost all of my hair with the second. Of course, I had every side effect in the book from prednisone, including a very serious MRSA infection. 

[00:42:52] Cheryl:
I’m so sorry. Wow. 

[00:42:55] Stefanie:
So, just like every other patient, I have been there and I have been on multiple medications. And I felt like my experience as a medical provider as well as my experiences with the patient of experiencing all of these detrimental side effects that are not very common, right? So, we’ve talked about this before too, Cheryl, but anybody out there who’s afraid of medication, you really shouldn’t be. There’s always a risk of side effect and it might not be the perfect fit for you. And medications save lives. some people wouldn’t be alive today if it weren’t for them. Unfortunately, for me, the first four did not do me any good. 

[00:43:34] Cheryl:
I’m so sorry. 

[00:43:35] Stefanie:
And so, with that, it actually turned out good because with that I found that my self-care, my mental health, my physical health, my diet, my mindfulness, it all became so much more important. And with that, I found a rhythm that worked for me. And as there’s a million people out there right now with a program, or a rule book, or a guidebook, or a diet, or a recommendation, right? And everybody has something. And I really believe that every person is just a little bit different. I don’t think that these very broad diets work for everyone, like the autoimmune protocol. I don’t recommend that broad diet for anyone. I think it’s very specific to the person. My point is my program is very tapered to each individual. We spend a lot of time talking. We track symptoms. We track diet. We talk about medications. And it has been the most rewarding thing I’ve ever done. I have always helped people with their health through my whole career, and it’s been amazing. This is a whole new level. I feel like I’m really helping women get their lives back. I just feel like it’s just the most amazing thing in the world. 

[00:44:53] Cheryl:
Yeah, and the only other thing I was gonna add that I found intriguing when I first found you is that you do a chart review, a medical chart review, which I know that’s something that can be so confusing to many patients. When, you know, that you help people understand, it sounds like, what’s in their chart. 

[00:45:12] Stefanie:
Yeah, so I think that there are a few things that I offer that absolutely no one else does. The first one is the chart review, and I have to say most rheumatologists and therapists and physicians in general that refer to me find this the most beneficial portion of my service. So, I will request records for as far back as anybody has kept them, and I will sit down and go through every page, every lab, every medication. When you look at the person as a whole, you can really start to see things pop out. So. I would say a third of the time, I find that there’s some very small little tweak that could be made with their autoimmune disease that I can communicate back to their rheumatologist or physician. They can make that change and feel great. 

I would say the other third of the time, there’s a workup missing, whether it’s imaging or lab work or some other workup looking for something, and I can also recommend that. The third thing is I find sometimes if I get out the whole chart and look and dig past the last five to seven years, sometimes we can find that there is a medication completely unrelated to their autoimmunity or something else in their medical background that could be treated a little bit differently that’s, like I said, completely unrelated to their autoimmunity or rheumatoid arthritis and work that up. Or, you know, one of the most common complaints of rheumatoid arthritis is the fatigue, right? 

[00:46:50] Cheryl:
Yes. 

[00:46:50] Stefanie:
So, some — yes, and everybody can agree with that one. What’s really important is that when you do that chart review is sometimes I can find another cause of that fatigue that’s very obvious, but may have been overlooked because it wasn’t the specialist, it wasn’t on the specialist radar, or maybe it was just overlooked many years ago, or in many cases, the guidelines have just changed. For example, everybody’s familiar with the vitamin D supplementation. 10 years ago, it was really hot and everybody was on vitamin D supplements. And then, in the past few years, it’s fallen out of favor. So, it’s the same thing where we can look up stuff and see, maybe this is a cause maybe we know more now than we did when you were tested five years ago. Let me try to bring this back to the attention of your medical providers. And I have to say, when I first started doing this, I was very nervous about approaching physicians and other medical providers. I didn’t mean any disrespect; I didn’t mean to step on any toes. I simply just wanted to be a part of the team. I have been met with such warm, welcoming arms in the medical community all across the nation that I couldn’t be happier.

[00:48:03] Cheryl:
That’s so wonderful. And I know that some people will be wondering, are you able to provide the service to people across the United States or even across the world, or is it specific to your state and how does that work? 

[00:48:15] Stefanie:
So, I am actually international now. It has been amazing and I have enjoyed learning. It’s amazing how much culture and lifestyle change across our world and how much those can affect disease. And it’s been amazing. I have clients right now in England, Australia, Canada, and all over the United States of America. It’s been a really unique experience. I believe very strongly in individualized treatments from everything from medications to basic healthcare to exercise, diet, supplements, mindfulness and mindset work. What I do is when you sign up to work with me, you get 12-weeks of my program. 

We meet for about an hour a week on Zoom, and I do have tons of exercises, tons of resources, guides, I can request records from your providers. I can communicate with all of your providers. It’s really quite amazing. I have amazing recommendations on my website from patients I have already coached, and I think the results have actually been above and beyond what I ever expected. I have helped people manage their pain, manage their fatigue, and really get their lives back. I think it’s really a great program and I would love to work with anybody who’s really looking for more answers with their rheumatoid arthritis.

[00:49:54] Cheryl:
That’s awesome. And yeah, I’m just, I’m so grateful for you for your time today and sharing your personal journey, your personal tips and tricks, and also your passion for your coaching program and your experience as a provider as well as a patient. So, it’s really just a unique combination of, kind of life and professional experiences that you have. So, I really appreciate you taking the time out of your, like we talked about with kids, it’s a busy schedule with kids, especially these days. So, I really appreciate it. 

[00:50:28] Stefanie:
Thank you so much for having me. I just wanted to make sure that, everybody knows my website is rheumatoidarthritiscoach.com. It’s spelled exactly how it sounds, rheumatoidarthritiscoach.com. My email is Stefanie with an F, stefanie@rheumatoidarthritiscoach.com. I’m also on Instagram and Facebook, which you said you would link this to. And I would love to chat with you. My consultations are completely free. We can chat. It’s completely risk free. Just reach out and we’ll see what we can do.

[00:51:06] Cheryl:
Oh, so exciting. Yay. Well, thanks again. 

[00:50:10] Stefanie:
Yeah. Thank you so much, Cheryl. 

[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.