My Spoonie Sisters
Welcome to My Spoonie Sisters! If you're wondering what a "Spoonie" is, it’s a term lovingly embraced by those living with chronic illnesses, based on the Spoon Theory. It’s all about managing our limited energy (or “spoons”) while navigating life’s challenges.
Each week, join us to hear from your "Spoonie Sisters" host, co-hosts, and our inspiring special guests as we share real-life stories, tips, and encouragement. Whether you're here to learn, connect, or feel less alone, you’ll find a supportive space filled with understanding, laughter, and strength. Let’s journey through chronic illness together!
Tune in and join the sisterhood!
All guests featured or mentioned in this podcast will be listed for your convenience. Don't forget to rate and subscribe to My Spoonie Sisters and follow @MySpoonieSisters on Instagram for updates on new episodes and more. If you have a story to share or want to be featured on My Spoonie Sisters, please email MySpoonieSisters@gmail.com. We eagerly look forward to speaking and hearing from all our Spoonies!
Disclaimer: While we are not doctors or healthcare Practitioners, we want to assure you that this podcast is a credible source of information. It's based on our guests' personal experiences and the strategies we've found effective for ourselves. However, everyone's body is unique, and what works for one person may not work for another. If you have any health-related questions, it's always best to consult your Primary Doctor or Rheumatologist.
Remember, our goal at My Spoonie Sisters is to connect people and provide them with the support and tools they need to live better lives.
My Spoonie Sisters
Finding Your Spoonie Super Power
Have you ever considered that your chronic illness might have given you superpowers? Not the kind that let you leap tall buildings, but the real-life abilities that make you uniquely resilient, intuitive, and resourceful.
In this heartfelt conversation, we explore the unexpected strengths that emerge when living with conditions like rheumatoid arthritis. Our guest shares how being diagnosed completely transformed her perspective, teaching her to value her incredible resilience – waking up each day to face a body that doesn't always cooperate, yet somehow finding ways to adapt and keep going. This quiet, persistent strength rarely gets recognized but represents an extraordinary form of courage.
We dive deep into how our intuition sharpens after diagnosis, helping us make smarter decisions about everything from travel plans to work commitments. Years of managing unpredictable symptoms teach us to read the fine print, seek flexibility, and anticipate our needs in ways others might never consider. This isn't about limitation – it's about making choices that allow us to enjoy life more fully.
The discussion takes fascinating turns through time management strategies (work smarter, not harder!), relationship wisdom (valuing positive connections while setting healthy boundaries), and career navigation with chronic illness. Our guest shares her remarkable journey from physically demanding hospital work to finding her purpose helping others with RA, writing for major health publications, and embracing multiple careers that accommodate her health needs.
Perhaps most inspiring is the revelation that being underestimated because of chronic illness can become its own kind of superpower – creating motivation to exceed expectations and the satisfaction of surprising others with what you can accomplish. Whether you're newly diagnosed
Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.
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Welcome back to my Spoonie Sisters. Today's roundtable is all about flipping the script. Chronic illness changes everything, but sometimes it gets us with strengths we never saw coming, whether it's tuning into your intuition like pros, becoming time management ninjas, or mastering the art of asking for help and meaning it too. We're celebrating the unexpected wins that came with the diagnosis, so grab your favorite flair-friendly drink and join us as we share our Spoonie superpowers. Hello Stephanie, how are you? Hi, I'm good. How are you today? I'm doing well. I'm really excited for us to sit down and talk about this. We've had many, many conversations on the podcast before, but this one is definitely a unique one, and so I'm going to dive right in. What is one superpower that you feel that you've gained because of chronic illness that your younger self never would have believed?
Speaker 2:So I love that we're talking today about superpowers, because a lot of times when you have a chronic illness, you don't automatically think that you have superpowers. In fact, I think when we're first diagnosed, our confidence level takes a big hit. So I love that we're talking about having superpowers today and that not only do we have superpowers, but that we have gained them because of our chronic illness. So that's really cool. So, to answer your question, the one superpower that I think I've gained because of having a chronic illness, which in my case would be rheumatoid arthritis, and I also have a relatively new diagnosis of scalp psoriasis I think that my pre-diagnosed self would have never believed how resilient I really am today.
Speaker 2:Every single day, I wake up and I face this body that doesn't always cooperate, and yet somehow I keep going. Now don't get me wrong. There are definitely bad days and good days, and we all know and even days that start good might not end good and they could start bad and get better. But to just wake up every day and learn tricks on how to adapt to pain, how to adapt to the uncertainty, the predictability and, of course, the dreaded fatigue, fatigue gets us all every time, without losing our sense of self and our sense of well-being and our self-confidence. I really think that's a strength that most people don't see, but it's really real and it's really powerful. And I think that if you are diagnosed with something and you're looking for your superpower, look for that resilience that you have day-to-day, because you're probably not even acknowledging how much resilience you already have.
Speaker 1:I agree. I look back and I think that the superpower that I gained is patience, which I always thought I had. But now I have the patience for others in a way I wouldn't have had before. I slow down my walking when I'm with certain people because I know what it's like. I've had those flare days where I'm having a hard time keeping up and so, as frustrating as this illness can be, it's great that it has changed us, to have that perspective and the patience for other people in a way.
Speaker 2:We probably wouldn't have ever had. I think on that note we could say, because you're totally right that when you're with certain people, you slow down. When certain people speak, you slow down and engage, you listen more carefully. But I think that because of that, of our shared superpower of being more patient, I think we're also both more resourceful because we've now become experts at managing medications, appointments, energy, emotions, all of that stuff and in addition to, I mean, I'm a total expert now in finding like coupons and copay cards online right, or even just finding emotional support online has. I consider myself very resourceful in that avenue now. So I think not only are we more resilient and patient, but also more resourceful and you know, we can really just find ways to adapt that still get the job done. Just a different way.
Speaker 1:I think you brought up something interesting. Have you run into because I've had this experience have you run into people that have not even heard of things like the co-pay assistance programs and they've had a diagnosis for a while? Because I have, and I'm always looking at them like how do you not know these things are available? My rheumatologist told me what are we?
Speaker 2:doing Every single day, because not only am I an RA patient, but I'm a health coach for people with RA, but I'm also a nurse practitioner, so I'm a practicing medical provider and even in the office every single day, people come in and are completely just unaware of the financial assistance programs available to them. So, luckily, we have a lot of resources where I work and I have a lot of resources available to me to be able to refer them or connect them, but, yeah, every single day. So if you're out there and you're listening to this and you're looking for a resource, what I would say is start with a simple Google search can help. But also, you can always go to the manufacturer of what you're looking for, like if it's for a medication and the manufacturer is just on the box or you can Google that too. You don't even have to have the prescription in hand.
Speaker 2:I mean, the online support, especially for RA, has grown so much in the last two decades. I'm so proud to be a part of it. I couldn't have even imagined it would be like this. I could never even have imagined I would have met somebody like you 10 years ago and have this amazing built-in friend in Instagram that just understands living with RA and all these layers that we talk about day to day. Anyway, I'm digressing, but if you're ever not sure, you can always hop on and there's so many Facebook groups and online groups and people online and you can always shoot those people a message or put a post up and just see what you get. You'd be so surprised what people share. I'm still surprised at what people suggest or share has worked for them. I mean, I feel like I've had RA for 10 years and I've been in healthcare for almost 20 and I still learn stuff every day.
Speaker 1:To go along with what you're saying. If you find a support group or a network that isn't working for you, it's okay to keep searching, keep finding the one that works for you, because there's one out there.
Speaker 2:Yeah, that's a really good point, because everybody we were just talking about this earlier, but everybody kind of has a different angle to support and to how they play in the RA community. So find the person that their angle resonates the most with you, for sure. So find the person that their angle resonates the most with you, for sure.
Speaker 1:Absolutely, and that might mean you have a few different people in your toolkit, because we all do offer so many different things. Like you and I, we both have our A and we both want to help people, but we come at it from a different direction. I'm not in the health realm the way that you are, and so what I'm going to come at you with is completely different, but we all do something special, right Agreed, it's our superpower.
Speaker 2:Absolutely, absolutely.
Speaker 1:Wow, how has your intuition or your gut instinct become sharper since your diagnosis, and do you have any stories that still amaze?
Speaker 2:you. I love this question because the answer is a yes, yes, yes, yes, yes. I can't even tell you how much my gut instincts have not only become sharper, but have sharpened. Every year I've had a diagnosis and every year I live with rheumatoid arthritis and now psoriasis. Every year I live with even just an aging body with age-related health conditions. My gut instincts become sharper and this is such an incredible thing to think about. But I think that in general, I can say that my instincts have become sharper because I, overall, take less risks.
Speaker 2:However, it's not that I don't have fun anymore. I don't take any risks. It's just that there was a time when, for example, I would take my family to Hawaii and schedule a hike and a zip lining tour and some other physically demanding expedition. You know all while on vacation, Ander, pre-rheumatoid arthritis me, I never would have read the fine print about work accommodations in a contract, or I really, when you know 22 year old me taking my first job and in you know wherever I was working at the time I never really would have read the fine print on FMLA sick leave or even how some of these big corporations you have access to physical therapy or occupational therapy services. One company I worked for, a big corporation. They had an OT come and evaluate our workspace for ergonomic design and longevity. Yeah, it was amazing and I remember reading that, thinking, you know, like 15, 20 years ago I wouldn't have even read this part of the contract.
Speaker 2:So I think that, when hindsight's 20-20, of course, but as you live with a chronic illness, you live and you learn, and you learn what to look for as well as not take risks. And then, of course, I feel like now it's not so much a gut instinct to not do things or to avoid things or to even to do things, but I'm always looking for things that have flexibility. But I'm always looking for those concert tickets that have the refundable option. You know, I always get the plane ticket that has the, you know, refundable or transferable option. Because my life is just a little bit different than it used to be, I would say I definitely my gut instincts have definitely sharpened because I take less risks but I still have a lot of fun. I just do it in a more flexible way.
Speaker 1:So listening to you took me back to like our trip to Hawaii. And it's interesting because sometimes, even though my husband knows I have RA and he's very much there for me and protective of me. It's interesting because he is the kind of person that wants to be doing something every single day. But I think he's learned, especially as we're aging and just keeping an eye on me. He only schedules one big activity a day because we want to have some downtime and relaxation too, and for him our vacations are all about food. He's like I want a good meal, I want to sit down and laugh and talk and visit and enjoy something tasty, and so it was interesting.
Speaker 1:On our trip we did a day where we went out to Kualoa Ranch and we did a movie sites tour and they take you out on a boat and stuff like that. What was great was there was very little walking. We get to do a lot of looking and picture taking and listening and taking it all in and that was great because that was it was a good relaxation point in the middle of our trip because some of the other activities involved more walking. I think we're getting about 18,000 steps a day. That is so many, but it's hard. It's hard when you travel, because you want to see all the things and you want to do all the things and it's like, okay, I guess there's time for sleep and recovery when I return home, hopefully. How do you feel, like your spouse does, with that kind of stuff?
Speaker 2:My husband loves to relax. Like his goals of any vacation is all relaxation. He would love it if we went to Hawaii. We keep talking about Hawaii, I think, because we both just love Hawaii, but you and I I mean, but he would be fine if we just went to Hawaii, got a condo or hotel right on the beach and just didn't leave. So it's usually me that has to slow down. But it's funny now, because now I have two children and one of my kids is a relaxer and one of them is a goer, and the little one is the goer and I have to hold him back. Now I'm like whoa, mommy can't do all of that. So me and your husband and my youngest should never vacation together. That could be dangerous.
Speaker 1:I think I'm kind of in the middle because I want that time in the ocean. We always get floaties from the ABC store and we go out onto the beach and we float in the waves and have fun and I want those hours of fun on the beach, but I want to check out the shops and I want to do the activities. I'm still trying to talk everyone into ziplining, even though I'm afraid of heights, but someday we are going to do it. Someone will cave and do this with me.
Speaker 2:Oh my gosh, I've ziplined in Hawaii and it's the single most terrifying thing I've ever done, really. Yes, cool, so you have to. I totally digress, but actually it's the second most terrifying vacation excursion. I will make this quick, but this is funny. The first ever was we went oh, what's it called? It's like deep sea fishing, something like that. We took a cruise and one of the excursions was they take you out on a boat like to the middle of the ocean. That was completely terrifying and I will honestly never do that again because I have never vomited so much in my life from the open ocean. And then it just wasn't as rewarding as I thought to catch a fish. I apologize to any big fisher people who are listening, no offense, it's just not for me, but more power to you.
Speaker 2:But anyway, the zip lining. So when you zip line, there's like these boxes that you have to kind of climb up so that you're at the right height. So like get enough. Like you can't just jump off of the platform. You have to get like height off of it or you won't zip because it's all about your weight. It's like a physics thing. Anyway, so off of it or you won't zip because it's all about your weight. It's like a physics thing, anyway. So when you do zip lines it's always like six or seven different lines, it's not just one zip line.
Speaker 2:And after the second one I couldn't even climb the boxes, I was frozen. My husband had to force me because you can't go back once you start. I was so scared I cannot even put it into words and I don't know why. I didn't think I would be scared. We have ziplining in Las Vegas that's over like buildings and I've done that and it's not scary, but ziplining over like the jungle where Jurassic Park was filmed, it just seemed completely terrifying, like I just I don't know. So I hope you love it.
Speaker 1:Now I'm a little bit frozen because I'm thinking okay, I still want to try to experience it and the Kualoa Mountains are my favorite area to go to, but can I climb the?
Speaker 2:boxes. Oh my gosh, it wasn't painful. It wasn't that I couldn't because of fear, it wasn't physically hard, but it's a lot of climbing and then people had like their whole families zip lining, so there would be like an adult couple and then like children. Like when we went, I think there was probably a five, seven and nine year old with us and these parents were putting their kids in the hook and just like giving them a push and I was just completely terrified. I don't know what it was, but it was not as enjoyable as I had anticipated Maybe.
Speaker 1:I'll stick with the ATV tour. We seem to really like that one. Yeah, that sounds a little safer.
Speaker 2:I don't want to, I don't want to rain on anybody's parade, but it was. My husband loved it. I mean I have pictures of him, like they have you flip over and do like Spider-Man and stuff and all of mine. I'm just like gripping the rope like a complete psychopath, like I couldn't even like spread my arms and legs for the photo opportunities. I was so terrified.
Speaker 1:Okay, well, that could definitely be me. I'm already afraid of heights anyway, it's so high. Well, okay, eyes are watering. So how about time management? Do you have any time management, rest rituals, boundaries? What kind of life skills have you mastered that you didn't have pre-illness?
Speaker 2:Yeah, this is so true. I think pre-diagnosis I was the worst at time management. I was a go until you drop kind of lady. I would just go, go, go. And of course I worked in healthcare and healthcare is very, very demanding, so we would just work. I remember we would work like back-to-back shifts. We wouldn't sleep or we would sleep just a few hours and then go right back to work.
Speaker 2:So definitely, rheumatoid arthritis has taught me to work smarter, not harder, as much of a cliche as that is.
Speaker 2:It has taught me to plan what I'm going to do, to research what I'm going to do, to be ready before I start it right, because we've all done that where we've started some project and then had to bail because we weren't prepared, I didn't have the tool or didn't have the resources.
Speaker 2:But also I've really learned to do certain tasks when my body is most cooperative and to not push myself through. And then, on the flip side, I've also really learned to optimize my health for important things. So, for example, today I knew I was going to be chatting with you. I made sure I got a good night's rest, I made sure I didn't overexert myself all morning and I wanted to make sure that my health was optimal for this commitment that I had. So I think, whereas before I would just work a whole bunch of days in a row and then try to go on a date night with my husband and we would go to a movie and I'd fall asleep right, so I think now I really just try to do things when my body is most cooperative. Rest when my body says rest and work smarter, not harder.
Speaker 1:I think those are really important tips for people to think about, because even with my diagnosis, I still am one of those I'm going to go till I drop kind of people and I don't know why. It's like ingrained in me and I don't know if you know Andy Byers very well, but she is constantly reminding me Jen, you've got to slow down. You've got to slow down and she's so right, because you're fine until you're not fine. And do you really want to find out in a bad way? You don't want to push your body to tell your. Well, I'm going to bring up. If you've heard her story before, she died for 38 minutes clinically and that's why she's written the book and talks so much about redefining fine, because she would wake up every day and tell everyone she was fine until she wasn't. And so I think that she is such a gift in my life to bring me back and remind me Jen, you've got to slow down, you overcommit yourself, you do too much, and she's right.
Speaker 1:I want to be there for everyone and I want to be there for everyone and I want to do all the things and every once in a while, boom life. Life puts me flat on my back. It's like no, jen, you cannot do all the things your body doesn't want you to do. All the things you're not capable. It's okay to set some boundaries I'm working on it but it's not easy. So if you have tips, tell me what I need to be doing to do this. I'm working on it, but it's not easy. So if you have tips on how to tell me what I need to be doing to do this, I'm all for them. Now I'm finally listening to everyone.
Speaker 2:I think you touched on a lot of really valid points there, because you are amazing, you are kind and loving and you're a nurturing human and you're very motherly, right Like. Even I've come to you sometimes wanting motherly help and your or even just kindness or support or love. I just wanted somebody who wouldn't tell me I was a complete idiot, right? So I would go to you, and so I think that your life goals I'm talking about you directly, but this is very generic we're all so loving and caring that we want to help everybody. I think the most important thing, though, is to think about is it worth it? Because sometimes it is, for example, so my oldest son finished fifth grade this year, and here where I live, fifth grade is the end of elementary school, and then they go to a different school. They go to middle school for sixth grade.
Speaker 2:I know everywhere is a little bit different so for fifth grade, every year they have this big Disneyland trip, and it's like a 3 am to 3 am the next day sort of situation. You don't sleep anywhere, right? So, of course, this year, my oldest was badly injured, as you know, and he fractured his L-spine and he's been in a wheelchair, but he insisted, insisted, jen, on going on this dang Disneyland trip. We're not talking about that, but I tried to talk him out of it. I tried to buy him out of it. I mean I tried everything, but he really really wanted to go and be with his fifth gradem to 3 am. I mean it was like 24 hours. And then, of course, I had not only my son who was in a wheelchair, but three other children I was responsible for. So I had a group of four and if you've ever people listening, if you've ever been to Disneyland, but having one adult and four children, you are just completely outnumbered and it's. I mean, they were great kids. I have no complaints. They were very well behaved, but it's still a lot. They all don't go to the bathroom at the same time. They all don't know when they have to go to the bathroom. These were 11-year-olds. They don't know what they like off of the menu. So it was a lot on me and so, anyway, I knew it was going to be a lot, but I decided it was going to be worth it and I took extra days off of work before and after and it was really funny because we came home like 3am on I don't know, like a Tuesday morning, and then I was up all day Tuesday and then we like had dinner and we were I don't know. We were just like watching something on TV and I like I guess I fell asleep on the couch and I woke up like 13 hours later, like on the couch, like makeup salon, like in the same clothes, everything, and I was like whoa, like I couldn't even remember falling asleep. But the point is sorry I'm rambling, but the point is is that particular event? I said it was worth it. I was going to go, go, go until I fell over, which I did, but it was worth it.
Speaker 2:I think what's really important is just that we step back and think, like, is taking this trip for my daughter worth it? Is doing this favor for my elderly father? Is the reward there? Is it necessary that I do it right? Is this necessary to care for my loved one or for my job, right? There's a lot of times for my job, I have to do things that are odd hours or very demanding for long periods of time, and sometimes it's just part of the commitment. You have to do it. I think it's the go, go go is one thing, but sometimes maybe we don't have to finish all of the laundry or do all of the dishes, or maybe we don't have to make dinner from scratch that night. Maybe you can just order some takeout and leave the dishes. So that's what I think. I think if you prioritize and really figure out what outcomes you value the most, that's how you prevent burnout from go, go, go.
Speaker 1:I agree and we ask for help. And if that means asking your spouse to help out with something, or even when my grandson comes to visit, he exhausts me and I love having him. But now he's at an age where he wants to help do things. Now sometimes that slows us down, like he wants to do up his own car seat, but then there's other things that slows us down. He wants to do up his own car seat, but then there's other things he can help with. He wants to help fold laundry and help put toys away, and that's great because it's a learning thing for him, but it's also helping me and my mother-in-law lives with us. It's okay if I let her help with the laundry and the dishes.
Speaker 1:So, being okay with allowing others to help to make our lives a little bit easier.
Speaker 2:Absolutely. You have to be able to accept help and it might always not be like your mother-in-law probably doesn't do laundry the same way you do. You know, same with me. I keep making this about you. I don't mean to make it about you, but you know our helpers do things differently than we do. It doesn't mean it's wrong, you know that.
Speaker 2:Yeah, I remember right after I had my second son, one of my girlfriends came over and she was like I'm not here to visit with you, I'm just going to help you with stuff around the house.
Speaker 2:And I was like, okay, and I was, even though he was my, it was my second child, I was, I still felt like a new mom. I still felt like I wasn't that experienced. Anyway, so she came over and I remember she did my laundry and I remember she did there was like dark colors, light colors and whites, and she did them all separately. And I remember like thinking I don't ever separate my darks and lights, I just do colors right. And then I was like Stephanie just shut up and let her do the laundry, Like who the heck cares how she separates it and if anything, she was doing it like better than I do it. Right, If anything, there was going to be no color bleeding or damage or like. If anything, she was better and so I had to. That was like my first eye opener, Like okay, you have to just let people help you how they can help you.
Speaker 1:I think you just gave me an idea for a fun icebreaker question for people. We can talk about things like how do you load your dishwasher, how do you do your laundry? Yeah, because I actually divide all mine up too. I have the darks, the lights, the whites, and now my husband's getting into like wearing things that are super special, and I had to hand wash a stupid silk shirt he bought in Hawaii. I wanted to choke him for that. So we have a special careful things you have to do and things you can't put in the dryer or things you need to dry on low.
Speaker 2:Remember there's no shame in putting those things in a bag and take it to your dry cleaners.
Speaker 1:You know that's great. There might be a dry cleaner here. I'll have to look into that.
Speaker 2:Something that needs ironing to the dry cleaners, and I think that the cleaners I took it to charged me $2 to iron a shirt.
Speaker 1:That's not even bad, I know, and it looks beautiful. I'm not ironing it. It does say that I can iron it, but I'm like you know what you want to iron, you do it yourself. Because every time I iron, I could iron all of his nice dress shirts or work shirts, and one morning he can get up and try on four different ones and they're all on the floor. And then I'm standing there going why did I iron anything for you? And the last time he did that I was like nope, never again, I'm not ironing for you.
Speaker 2:So if anybody asks me about great household tips because you asked, you said you have another topic now, but my go-to best advice ever for all things rheumatoid arthritis is run the dishwasher twice. I do not rinse my dishes at all before I put them in the dishwasher. I run it once. I empty the trap Is that what it's called? It might be Something like that the part you take out that catches the food and I empty it and then I run it again Every single day, every single night. I run my dishwasher twice and I feel like that's my tip. Anytime anybody asks me, I say just run your dishwasher twice, because my husband or he'll do the pots and pans by hand and then he'll run the dishwasher and then empty it and then load pots and pans separate and we end up just.
Speaker 1:I feel like we're just always doing dishes and with kids, but I there's things to do and we need more time in the day, so why not make it a little easier?
Speaker 2:I run it twice. That's my.
Speaker 1:Ooh, I like that one. What would be your top favorite gadgets that you use in your house to help you?
Speaker 2:Ooh, that's a tough one because, by personal preference, I'm not a big gadget person. I don't like the. I don't mean it negative, but I don't like the clutter. I'm not a big gadget person, I don't. I don't like the. I don't mean it negative, but I don't like the clutter. I don't like a lot of stuff. I feel like keeping my inventory low actually helps me more with my RA than having a lot of gadgets, which is that's just personal preference.
Speaker 2:I love gadget people and I love seeing what is coming to the market and what's available for us. I think definitely my favorite would be I don't have one here, but those grippy I don't know what they're called like the grippy, round or square, just flat things that you use to open jars. I use those all day, every day. My kids even use them now, and then I don't know. Honestly, I think that the most adaptive gadget that I have would probably be my laptop, and I have all. My whole setup is very adaptive. My screen is as big as you can buy on a laptop and then I have a monitor that also helps. So it helps with strain, you know, neck strain, wrist strain, shoulder strain. I have adjustable height desks, all of those gadgets I think are really important.
Speaker 2:And then I mean I drive a minivan, which everybody in my life makes fun of me, but I love my minivan, I don't care what anybody says. I think that that's like my best gadget, with three of the doors on a button and not having to. You know, my husband's car is not, it's not a minivan, but it's not all automated. So we have to like close his trunk and open all four doors, and if he's parked on a hill it's really hard to get in and out of the doors. And we have kids. So you're, you know, you're like loading the kids and trying to not let them get their arms and legs caught. So I think my favorite gadget is probably my minivan.
Speaker 1:We actually we had two minivans while we were on our vacation because we had 10 of us, so we had two minivans and we were kind of laughing about it. But oh my gosh, I love pushing that little button and the doors close and it was just so nice and I kept thinking, wow, I kind of secretly want one of these now.
Speaker 2:If you don't already have one and then you rent one, you're converted, I know.
Speaker 1:We have a Subaru, but there's this part of me that's like I wonder if someday I could talk him into this.
Speaker 2:Oh yeah, it's so nice and the height to load stuff is that it's not a car, so it's not really low, and it's not a truck or SUV, so it's not too high. It's like this perfect height. So like I love gardening and I can like take my wagon into a store, fill my wagon with whatever I'm buying and then I can lift up the wagon and set it in the back of my van and I'm always like you cannot do this with any other car, I don't care what anybody says, even the best SUVs it's too high. So I don't know. I love my min-bath. That's my favorite gadget.
Speaker 1:I think my favorite gadget. I mean, there's a few of them and I'm all about kind of like you, I don't want a bunch of clutter and I want things that are small and easy to use. So like I have the Jiffy Twist that's under the cupboard because you can't even see it there. I don't even think my husband knows I have it, but when he's not home, if I need to open something, just shove it in there and twist.
Speaker 1:And there we go, I have my kitchen mama can opener, which even my grandson thinks is like the best thing ever. And then my third one would be I don't remember what they're called, but I think you and Cheryl and I might all have them. They are those scissors that have the spring in them so they don't have those why did I think you did?
Speaker 2:my goodness I'm, my house is we don't take care of scissors, so I have to buy them by like 12 at a time. Oh, my goodness, because my, my kids break them or they get them wet and they rot or they I mean, they're my family's terrible with scissors, so I can't buy nice scissors oh, gotcha.
Speaker 1:Well I have these ones. I got them for when I would do Christmas wrapping, because I know exactly what you're talking about.
Speaker 1:I think it was Sheryl Crow that I saw using them and I thought, oh my gosh, I have these. And then I don't remember who shared it. I still haven't got it. But there's this thing that it like has a little hook and it's great for opening packages or cutting wrapping papers, like a little thing that cuts. I have that too. For some reason. I think it was your video that I saw with it and I still don't have one, but I keep wanting to get one.
Speaker 2:It's okay, it doesn't. Sorry, I probably shouldn't talk bad. It works great if it's taped, like if your box is taped or your package from the store is taped. It doesn't work well on that Amazon tape. That's like paper. Do you know what I'm talking about?
Speaker 1:I know exactly what you're talking about and most of my Amazon packages come with that See now they're all that weird paper tape with like the threading in it.
Speaker 2:It doesn't work great on that, so I don't really use it that much anymore.
Speaker 1:Oh well, that's good to know, so maybe it wouldn't be as great as I think it would be. And don't forget compression gloves from grace enable, those are the best so those are the best.
Speaker 2:Look, I ducked out of you. But look, I have like, oh my gosh, I can't even tell you. Look, I have like three pairs. Like right here I have every color.
Speaker 1:Well, I don't have the red ones and I don't have the beige ones, but I have every other.
Speaker 2:I don't have right. Wait, I need to have red. I don't think I have red or beige either.
Speaker 1:But I don't really wear red, so that was the one I never got. But I did debate getting the beige ones because in the fall I wear a lot of beige so I thought it might kind of look kind of cute with it. I don't know, but which color do you wear the most?
Speaker 2:Purple.
Speaker 1:Me too. Purple and teal those are my go-to ones. The purple pair because my other pair was like five years old. Have your relationships changed in ways that brought?
Speaker 2:clarity, strength or deeper connections? Absolutely, since I was diagnosed with rheumatoid arthritis, I treat my relationships so much differently now. But there's two sides to it. So first of all, I value my positive relationships more, those date nights I told you about earlier where I would be so exhausted I wouldn't reserve any energy or spoons for this date night and I would fall asleep or I wouldn't have the energy to give my undivided attention to our conversation. I make sure that I prioritize that time because as you live with these chronic illnesses like rheumatoid arthritis, you realize how valuable each day really is and how valuable the people who love you and enrich your life really are, and you realize how important it is to actually dedicate time to them.
Speaker 2:You know, as a go-go-goer I used to think, oh, you know, sitting around the kitchen table playing Uno was like a waste of a Saturday night. But how wrong was I. You know it's like that's bonding time. That's time when you reconnect with your family and your kids and your loved ones and your partner, you know.
Speaker 2:And but also, on the flip side of that, rheumatoid arthritis has really taught me how to not continue to support relationships that don't fulfill me, and I definitely don't mean that in a selfish way. You know I I still love people unconditionally, especially older friends I've had, not in age but in the time that we've been friends. But there's definitely people I've been friends with for decades that just aren't really as supportive of me and my unique health requirements and so I don't sink as much energy into them, and it's important because you have to preserve some of your energy for what really matters. So it's just. I think it's really been both ways. Having RA has taught me to love the people that really love me harder and also where to have healthy boundaries and to maybe not invest so much in something that doesn't really fulfill me.
Speaker 1:Now on a game night. What is your favorite game? Ooh, really fulfill me. Now on a game night.
Speaker 2:What is your favorite game? That's a hard one because my kids are at a really weird age right now where they like they can't play the same games. So that's been. You know we we got this new. You know, cheryl is big on games. She always posts games on social media and every time she does, I buy them because I'm like man. This is like she's like my Amazon review, like for board games. But she posted one a long time ago called Azul, and it's hard. It's like my 11 year old is probably as young as you could be to play it and I think it's still hard even for him. But I think Azul is really fun.
Speaker 1:I'm not familiar with that one, but one that I've played with big groups of people with varying ages. Actually, the first time I played it we had my mother-in-law, my friend's mother, which is like in her 80s, but then we had my friend's granddaughter and the youngest one was probably third grade. We played what the Meme and they have like a kid's version and I had never played it before until playing that and it was so hilarious and everyone was laughing and everyone could play cool. And you said it's a game. Yeah, it's a game and there's like cards and it has a picture of a meme on it. And then I'm trying to remember how exactly it works. It's like you all are you have different cards and you pick out which card you want to describe that meme and so the person that held up the meme gets to choose which which card that you've given them is the funniest one.
Speaker 1:To go with the meme and it gets everyone laughing and there's just hilarious pictures. You get crazy ones of dogs and just all kinds of fun stuff and it's for kids too.
Speaker 2:they have have a kid's version. Cool, I'll have to try it.
Speaker 1:That was the version I played for the first time and I was like I'm good with either version. They're both funny. This is hilarious. So, yeah, cool. And to go with that, recently I don't remember who in my family it was or why we had this crazy picture, but some picture. It might have been my husband and my grandson and they had weird looks on their faces or something. But I sent it in our family group chat and everybody was laughing at the photo and I said I think we need to make our own what the Meme? And do it with family photos, find all the crazy photos and maybe print them, laminate them and make our own game.
Speaker 2:Oh my gosh, that's such a good idea. There could be some funny photos.
Speaker 1:Yeah, oh yeah. Especially, you know you get holidays and birthdays and you're taking pictures of your kids or whoever, and we get these fun, crazy expressions on our faces and you just catch the most unusual and unique moments.
Speaker 2:Oh, that'd be so fun. Yeah, yeah, that's really fun. Yeah, I like board games. I think they're good at. They conserve a lot of energy. They help you reconnect with people who matter right, like your family and friends. Most of them. You can sit. Yeah, there's definitely there's one though, oh sorry.
Speaker 1:I was going to say definitely we need a comfortable chair. I think there's been times where I'm at someone's house Maybe they have the most uncomfortable kitchen chairs. That that is like high priority list is having somewhere comfortable to sit. Because if I don't have somewhere comfortable to sit, you're going to notice that I'm constantly doing kind of a little bit of this action not that people can see me, but constantly moving. You'll notice my shoulders shifting, my hips shifting, because I'm hurting. My hips start to hurt, my back starts to hurt.
Speaker 2:I want to get up and move, totally. Yeah, there's this other game, though it's mostly for kids, but it's called Taco Cat Goat Cheese Pizza. Have you played?
Speaker 1:that one.
Speaker 2:I've heard of it, I haven't played it, it's horrible. You have to put it on cards in a certain order, but basically when somebody notices that the order is wrong, you have to slap your hand down on the cards. But everybody slaps their hand. My gosh, it hurts my hands so bad. If you have RA, do not buy taco cat goat cheese pizza.
Speaker 1:Anyway, if your chronic illness turned you into a resilience superhero, what would your superhero name be?
Speaker 2:Well, I would obviously be the rheumatoid arthritis coach, because I am a superhero and I play that role every single day by helping people live their best lives with rheumatoid arthritis.
Speaker 1:I think for my superhero name it would somehow I would add in the word tinker or tinker bell into my name somehow like gracefully tinker or something. Yeah, something like that. Just because everyone always calls me tinker or tinkerbell because I'm always tinkering on projects, I like that. What's one surprising joy, opportunity or passion that only came because of your chronic illness journey.
Speaker 2:Share this story every time I'm interviewed because it's such a good story. But I started my healthcare career in a hospital setting where I had a very physically demanding job. Not only did I do a lot of procedures, but it was a lot of walking, a lot of standing, a lot of on my feet, and we worked seven days on, seven days off. So on the seven days on we really had no breaks. We didn't go home at night or anything like that. And when I was diagnosed I was really struggling to keep up with that job and it was really hard on me. And then my week off I would be, I mean, nearly dead at home. It took me days and days to recover from my week on, and so I was completely sleep deprived, completely exhausted. I had no time for medical appointments because I could never figure out when my week on or off was, or if I would even feel good enough to get out of bed.
Speaker 2:So because of that experience and having that, and then getting diagnosed with RA, I mean I completely changed careers, like I took the biggest pivot, the biggest chance I've ever taken in my entire life, and I left that job, which at the time was the only job I had ever known. It was the only field I had ever known. It was the only thing I knew how to do as an adult. And I left and tried a whole new specialty and went to an office where I was in an outpatient setting, where offices are. Healthcare is still. It's still a demanding office job. You're still kind of up and down a lot, but much less than a hospital. So you know you're mostly sitting, mostly at a desk, even though you do go room to room.
Speaker 2:But yeah, so I think it really made me completely change careers and directions of my life and, honestly, it was the best thing I could have done in my entire life because it made me so multifaceted now I have so much experience now and it made me more comfortable with making big jumps or big changes to my life and it made me, you know, I'm more like on my toes now, not physically, but you know, so to speak, where I can learn new skills and adapt and you know, just pivot, pivot, pivot and it's. It's really cool that I actually got the diagnosis and then made that change and that it worked out. I don't know that it works out that well for everybody, but for me it was, honestly, the best thing that could have happened to me was being forced to leave that job and change completely change careers.
Speaker 1:What would you say is in your toolkit when it comes to work? Are there things you do to help you get through a day better? Do you take breaks and walk around or get up and stretch? What helps you navigate your workday better?
Speaker 2:Well, first and foremost, I make sure that the job's a good fit, and if you know me at all, you know I'm an entrepreneur. I have like 17 jobs at any given time. People are always shocked like what job are you even talking about when I'm talking? So the first thing is that you have to make sure the job's a good fit. No matter what your skillset is or your training, there's something in your field that works for you, and this can be even you know people who are very, very niche, very, very highly trained in. You know one specific area. There's always that remote option out there, or there's always that desk job within that field, or there's always that remote option out there, or there's always that desk job within that field, or there's always an alternative to exactly what you think you should be doing. So I think just being really open-minded and, first and foremost, finding the job that works for you, that's how I mean number one, that's how I navigate career while living with rheumatoid arthritis. If the job's not right, I just don't do the job anymore, and I've had plenty of things like that. And, with that being said, I'm not a total jerk about it. Right? I don't sign a two-year contract and then quit after a week and say, oh, this wasn't a good fit. I'm very open and honest with employers, with project managers, with people who come to me and I say, like, how about we just try it out? Where I work as a nurse practitioner now, it's physician-owned. You know there's lots of different structures of medical groups and offices, but it's physician-owned. And I told the physician I want this job, this is a good fit for me. Do you mind if I come and follow you around for two weeks for free and make sure this is a good fit? And I think he was kind of shocked but I was like I don't want you to pay me, I just want to work for two weeks, follow you around and see if I'm a good fit with the office, if this is the kind of job that I want, if I like driving here, parking every day, right, if the staff is cohesive with me there's all these other things you look at. So I did that and I was really open and honest and I mean, what employer wouldn't be open to that? You know, yeah, you just want to follow me around for a couple of weeks. So I think, really making sure the job is a good fit.
Speaker 2:And then, of course, you know, if you have really severe rheumatoid arthritis, you have to be realistic, and I know everybody. We really should all achieve our dreams. You know, jen, you and I are like this generation that you could do anything, right, you could be an astronaut if you want. Honestly, I even tell my kids now that's not always true, sometimes you have to rein it in a little my personality I could never be a police officer. I just could not do it. It's not in my soul. But so if you have very severe RA, or, like me, I'm never going to be an acrobat, right? I'm just never going to be a Cirque performer on the Las Vegas strip. And I'm never going to be a dancer, right, I'm never going to be. There's just things that you have to be realistic about. Yes, you can still dance as a hobby, you can still be an acrobat as a hobby and do it when you want to, or for small groups, or you know. But to say, you're going to travel the world as a trapeze artist, you know like, I don't know, like you have to find a job that fits and be really realistic with that. And then, from there, of course, make sure your workstation is ergonomic and comfortable. And then the schedule is everything too.
Speaker 2:Being in healthcare, I worked nights for so many years and for me it was not a good fit. For my health, I was sick all the time. I struggled with just managing the schedules of my life outside of work. My relationships were a mess because I couldn't see anybody. When they were all having family dinner, I was sleeping, anyway. I go on and on. This could be a whole podcast in itself on how to navigate careers with RA. But first and foremost, find a job that fits. Second would be be realistic about what you can and can't do. Now, I'm a nurse practitioner, but that's a big umbrella of nursing, and if you have RA you can definitely be a nurse. There are so many fields within nursing or even in healthcare that are not extremely physically demanding. Now, should you be an orthopedic surgeon? Definitely not. Unless maybe you want to do peds, but it's just just be realistic too. So find the job that fits and be realistic.
Speaker 1:To add to that too. It's okay if you you change directions. It's okay to pivot as you get older, because I think especially you're you're 40, I'm 45. As we've gotten older, we've gotten to know ourselves so much better. We know our personalities, we know what we enjoy, what makes us thrive, and so maybe you're a people person, and so you need a job where you deal with people, you talk with them. I don't know, maybe you're not a people person, maybe you prefer working at a desk alone all the time, maybe you like to work in groups. It's okay to pivot once you get to know yourself better and do something that brings you joy.
Speaker 2:I love that because I've never been. I'm like a science and math person. I've never been like an English or writing person. So if you had told me 20 years ago I would be a writer, I would have laughed in your face. I'm just. I'm not really a creative person either. You know, and I don't know if your audience knows, but I write now for Healthline and Bezzy and I used to write for the Global Healthy Living Foundation, which is creaky joints, and I've done some pieces for Health Central and I write for Medical News Today. Now I'm one of their health writers. So anyway, if you had told me 20 years ago that I was going to be a writer or a journalist of any kind, I never would have thought. But somebody suggested it and I stayed open-minded and I tried it and it worked out great for me and I think it took years of getting to know myself to realize that it might be a good fit.
Speaker 1:That's a really good point. And I even look back and in high school they had tests that we could take of what would be good for you and I even did a program. It was called Experienced Based Career Education. It was my senior year and the last few hours of the day was doing this program and sometimes we would meet and we would do English class for the day and then other times we were out in the community working with other businesses and they wanted us to pick three different directions of a career that we wanted and so they would find a placement for us to go out and check out these fields and it was great.
Speaker 1:I was kind of all over the place. I wanted to be an elementary school psychologist, a graphic designer or an engineer. I was all over the place. It's really boring and you work on your computer all day and I hated it, which I love, computers and people know I love to be creative. But when you're an engineer, where's the creativity? And back then I don't think I realized how creative I am and how much I crave that. Graphic design would have been perfect. I should have done that. I do all kinds of content creation now and it's what makes me thrive and fills my cup for the day. So it's interesting that as we get older we figure all these things out.
Speaker 2:But also as time passes. Just to add one more thing to what you said for people living with chronic illness, careers evolve too. Like for you graphic design. 20 years ago it was a completely different world, like there was no Canva. You had to buy very expensive software, very expensive hardware. You had to have multiple computers, multiple screens, fancy mice.
Speaker 1:It was not like it is now it was so, so different and they had me working at a business called Litho Printing and I was learning how to make business cards and pamphlets and all kinds of things and I loved it and I had fun, but the program's definitely way different. The program I would have done to become one completely different than it is now. Now there's different areas. You're not just taking just a graphic design program. You can pick different kinds. So yeah, that's very, very good.
Speaker 2:I mean, business cards are kind of obsolete now I know. Now it's like where's a very, very good point.
Speaker 1:I mean like business cards are like kind of obsolete. Now I know. Now it's like where's my QR code?
Speaker 2:Totally, so I think through that yeah.
Speaker 1:Now you brought up a little bit of what you do, and actually that was one of my questions for you is can you kind of tell, besides the writing and besides the nurse practitioner, what other kinds of work have you done, and is there anything else you're wanting to do someday?
Speaker 2:Oh my gosh, that's such a good question. I have done so many things. I've worked across the board in healthcare, from very niche, very specialized areas to. I've done street medicine, which if you work in healthcare you know it's literally seeing unhoused people on street corners or in shelters or in pop-up tents. I've definitely worked with everywhere, from the underserved communities to the. I've had VIP positions as well, where we serve professional sports teams, and I've met big, famous actors, actresses, people with a lot of power, especially in our city and our geographic region.
Speaker 2:Everything in between I've done in health care. I've also been a journalist with many different health organizations throughout the last six or seven years, which has been such an exciting thing to explore. I've helped develop programs and apps, which has been really exciting. I've been behind quite a few stealth startups, which has been really really cool, and those have definitely been first experiences for me. And then, of course, I mean I love plants. As you can see, I have a ton of plants behind me and all over my house and I love. I have an outdoor garden and I do grow and sell indoor and outdoor plants. My kids dog walk.
Speaker 2:I mean I'm definitely a jack of all trades. I like to keep myself really well-rounded. I like to stay active, I like to stay busy, but again that go, go, go. I know when to take breaks and when to rest. But of course, my biggest and most proud achievement is RheumatoidArthritisCoachcom and that's where I work with women one-on-one who are living with rheumatoid arthritis to live their very best lives and the reach that I have with people. It is so rewarding I can't even put it into words because it's just the most beautiful thing I've ever done with my life is to help these women just redirect their lives and get back on track and see their worth again after this diagnosis and see these they have all these perceived limitations that aren't even real limitations, and to just get them back to living again. So I love what I do with rheumatoidarthritiscoachcom, which that's definitely what I'm most proud of.
Speaker 1:I'm just proud of you. You are an amazing lady. Thank you, I'm proud of you. Thank you. All right, let's dream big. If you could give one of your Spoonie superpowers to the world, which one would it be, and why?
Speaker 2:Oh, I love this question. So I think my best Spoonie superpower is being underestimated and I realized that that sounds funny, but that the when the entire world underestimates you, you have this motivation to prove them wrong and you have this resilience and strength that really forces you to challenge yourself. And you know, being underestimated makes me want to beat my previous scores and odds and personal records Right. And then, when you're underestimated by the entire world, you have this element of surprise.
Speaker 2:Where you come out, you know, I come on a podcast and I'm like, yes, I have 17 different jobs and I have kids and I do all of these really amazing things and I'm actually like a nice person to talk to and people are always my gosh. I'm so surprised that you are the way you are. And I'm like, yes, I know, and I told people, I'm like Taylor Swift. Everybody underestimated me in the beginning Because I think people really did underestimate her, but that's a whole nother topic. Yeah, so I think being underestimated is my superhero as a spoony and I just love beating my previous records and just surprising the whole world with how amazing I can be despite rheumatoid arthritis.
Speaker 1:I think that would be a great superhero power to give to everyone, because there are so many people that have that superpower and they don't even realize it. I think we underestimate ourselves.
Speaker 2:Totally yeah, and then you don't even try to surprise people, exactly.
Speaker 1:Exactly, I feel like we could talk for hours and hours and hours, but this has been such a good chat, thanks for having me.
Speaker 2:I always love seeing you. If you're in search of some help on how to live your best life with rheumatoid arthritis, head to rheumatoidarthritiscoachcomants are always free, and I do have a special right now.
Speaker 1:Ooh, there you go, okay, well, listeners, until next time. Don't forget your spoon.
