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
From Diagnosis to Advocacy: Alexa's Journey
Have you ever wondered how one navigates life with multiple chronic illnesses? Meet Alexa Sutherland, who has been fighting against juvenile rheumatoid arthritis since she was just 15 months old and later fibromyalgia, ankylosing spondylitis, and the more recent Grave's disease diagnosis. Her journey is a testament to resilience and the power of community. Alexa shares her story, highlighting both the struggles and the support she's found, particularly through memorable connections formed at significant moments, like a poignant meeting in Colorado. Her advocacy on social media shines a light on the often unseen challenges of invisible disabilities, emphasizing the importance of camaraderie among those with similar battles.
Join us as we unpack the complexities of managing multiple chronic illnesses such as Graves' disease, fibromyalgia, RA, and AS. Alexa and I delve into the world of evolving medications and the emotional turmoil that new diagnoses can bring. We'll also touch on the excitement and nerves surrounding my upcoming speaking opportunity in DC, sharing insights and the sometimes-comical confusion that comes with engaging in high-level scientific discussions. This episode promises to provide a heartfelt look at chronic illness management, the hope brought by medical advancements, and the unyielding strength within the chronic illness community.
Blog www.glowlexa.com
IG: https://www.instagram.com/glowlexa/
TT: https://www.tiktok.com/@alexasutherland13
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Welcome to my Spoonie Sisters. I'm your host, Jen, and today we have a truly inspiring guest with us. This is Alexa Sutherland, and. Alexa is a Californian who was diagnosed with juvenile rheumatoid arthritis at just 15 months old and fibromyalgia at the age of 13. Her journey through chronic illness has been anything but easy and she's tried nearly every medication and treatment plan available for RA. In her 20s, Alexa has taken on the important role of advocating not just for herself, but for others battling invisible disabilities. She uses her platform on social media to spread awareness, educate others and inspire those who are fighting similar battles. Her mission is to make the world understand that hundreds of disabilities are invisible and that appearances can be deceiving when it comes to health. Alexa, thank you so much for joining us today. I am so excited to dive into your story and learn more about you. Your story and learn more about you. Yes, it did. Did you hear it? I should know better to unplug it.
Speaker 2:It's okay.
Speaker 1:I feel like people don't realize it until they actually say my name. And then you know, yeah, yeah, the one in my kitchen we call her Echo, but the rest of them, yeah, the one in my kitchen, we call her Echo, but the rest of them, yeah, I'm not going to say your name again, sorry, no worries. So, hey, it's so good to see you again. Good to see you. I missed you. I missed you too. You're my little sister, so I'm going to say my Spoonie sisters. What you don't know is we actually met each other a few months ago in person in Colorado, and I think you know the group of us. We had all kinds of fun shenanigans that went on.
Speaker 2:We did. Yeah, we had some fun nights and a lot of educational days. It was a great trip.
Speaker 1:I think my favorite was just sitting down and shooting the breeze having coffee.
Speaker 2:Oh yeah, that was great. And the dinner we went and got really good Mexican food one night that was really fun.
Speaker 1:Mexican will always have my home. It'll be my. Yeah, it's my favorite. I could have Mexican every day. So do you mind telling us a little bit about yourself?
Speaker 2:Yeah, so she said a lot of it, but I've been dealing with rheumatoid arthritis since I was 15 months old. I've been born and raised in Southern California, a little bit outside of LA, and, yeah, now I have a total of four chronic, invisible illnesses. They kind of just stack up one after the other. Autoimmune diseases like to do that. Um, but yeah, I I'm really passionate about sharing my story and helping people along the way, and I've been able to connect with a lot of great people online or in person. So, um, yeah, I mean it's obviously such a bummer to live with these things, but I do truly believe that they have shaped me into the person I am. And you know I won't say I wouldn't trade it for the world, because I definitely would, but I'm thankful for the opportunities it's brought me and you know the people I've met along the way so happy to be here today.
Speaker 1:You know the people I've met along the way so happy to be here today and it's it's not a kind of a funny thing, cause we always say I mean, a lot of us say that we wouldn't change it, but we would it is truly because our lives are incredible. Because of it, in a way we don't I mean, in a way we love everything that is brought to us and all the people. We don't like the ickiness of it all totally.
Speaker 2:Yeah, I mean definitely highs and lows and the lows are really low, but at least it balances out with, you know, the giving back and meeting other people and getting to travel, like we got to travel and meet each other. That was awesome.
Speaker 1:So before we dive into any of that, so we brought up the fact that you were diagnosed early on with rheumatoid as a child well, infant really and then fibromyalgia. So what have you been diagnosed with since then?
Speaker 2:Yeah, so when I was then like 22, I was having a lot of back pain and after some x-rays and MRIs and everything they said I had ankylosing spondylitis. I never know if I'm saying that just quite right, but it's essentially arthritis of the spine and overall, over time your spine can fuse together and it's not. I don't have a very. It's not very severe, but it definitely causes me a lot of discomfort. And then about two years ago I was diagnosed with Graves' disease, which is a thyroid disorder. So that was the first diagnosis. That was completely not anything like I was familiar with.
Speaker 2:You know, fibromyalgia kind of goes hand in hand with RA. Anything like I was familiar with you know, fibromyalgia kind of goes hand in hand with RA, as kind of goes hand in hand with arthritis. So that kind of all makes sense. But the thyroid disorder diagnosis was, like you know, it took a lot of education and researching and like it was a whole new ballgame that one. So yes, those are all important, do you feel like that one? So yes, those are those are all.
Speaker 1:Do you feel like that one really threw you for a loop that one really did it to me.
Speaker 2:Yeah, like I was already. That was a couple years after the AS diagnosis, and so I feel like I was kind of just starting to get a hold on that and like on medications that was helping that. And then this whole new thing was just like the icing on the cake for me and I didn't take it very well. It was really hard for me to stomach and having to like get a whole new line of doctors because it had nothing to do with rheumatology or pain and so it was. It was a lot, and I always thought that being a child with chronic illness and arthritis was the hardest part and I was like well, now I, I know, I know everything there is to know.
Speaker 2:I've been on the medications like nothing really scares me anymore because it's familiar. But this was, this was scary and just like it felt like gosh, what, what else could possibly get thrown my way? I'm like 24 and I have four diagnoses. What is 44 going to look like? So it was tough. I think I'm in a much better place now, but at the time I was like I can't take another one.
Speaker 1:As a person that's 44 years old, I can tell you it's going to look a little like this. Yeah, you know I'm ready for it, but you know it's not a bad thing. I think you know. When I was your age, I definitely thought my gosh, what else could go wrong? You know what else is going to happen to me, and by the time I was 30, you know, having kids in middle school and having RA I thought my life was over yeah but you are gonna have a beautiful life. You absolutely are.
Speaker 2:I mean you already do I do, I do. Yes, it's been hard at times, but I'm also thinking. You know, things could be so much worse and I could be in a lot more pain than I am, and I'm thankful that I have access to the medicines I do and doctors that I like. So you know, I try to stay as positive as possible.
Speaker 1:Absolutely so. You've tried a wide range of medications and treatment plans. Can you talk about some of the challenges that you've faced in finding the right treatments that work best for you?
Speaker 2:Yeah, I mean when I was younger, the options were far, far, far more limited than they are now. I mean, even, I think when I was first diagnosed, the treatment was like Naperson, you know, and Motrin children's Motrin and it wasn't until I was a little bit older that I started taking methotrexate and it wasn't until I was a little bit older that I started taking methotrexate. And then, yeah, for me personally, my problem is that I, my body, will get immune to medications after sometimes two years, sometimes 10. I think the longest drug I was on was for 10 years. That was Zeldjian's, but it was getting to a point where there were no medications left, really Like I was going to have to recycle one that had already failed me.
Speaker 2:And now, you know, I'm not exactly in that place now, but still, like there, I've truly been on pretty much any medicine you see a commercial for on tv. I've probably tried it. So, yeah, finding the right one that works a for the pain, but then b, you can manage the side effects, or you know, some make you nauseous or you know, so it's finding the right balance can be hard, but thankfully, you know, we've had so much medical improvements and new medicines are always on the horizon, so I don't feel as desperate as I once was of like, oh my gosh, what am I going to do next? Because I've tried them all.
Speaker 1:So going to an event like the one we did in Denver and getting to hear what all of these researchers and rheumatologists have to say, did that give you encouragement for what the future looks like for your options in medications and treatments?
Speaker 2:Definitely. I think it's always told to you like oh, there's always new medications on the horizon or something's always around the corner. But to actually see it and hear it firsthand from the doctors that are doing the research, and not just you know your doctor in your office, but seeing it and seeing the graphs and the charts and hearing their research, the graphs and the charts and hearing their research, and I think that was really good for me just to know that there is so much being done that we don't even realize you know. And yeah, I think that gave me hope and reassurance that you know there, even could you know a cure could be around the corner, not just a new medication, but something that could really change the game in the near future. It seems very possible.
Speaker 1:Absolutely, and I think you know, seeing their positivity and their excitement for what they're working on, granted, I think more than half of it went over our heads.
Speaker 2:Probably more than three quarters.
Speaker 1:Yeah, but it was fun to see just the excitement on all of our faces as we're hearing these things and going, okay, this makes sense. Okay, what did they just say?
Speaker 2:Okay, yeah, and trying to like decode it on our laptops, yeah.
Speaker 1:Yeah, and trying to write it down and make it make sense to talk to other people about later. And I walked away looking at my notes and I was like I have no idea what I was talking about. It's a language, right? I think I wrote something down about like monocytes and I don't even remember what else.
Speaker 2:And I went home and I was like what? Yeah, so many people were like what did you learn? I'm like I wish I could tell you because it was, yeah, it was like a different language some of it.
Speaker 1:So I haven't officially announced this yet, but I am going to tell you that I am planning to be there in DC in November. Amazing, yes, yes, and so I'm. I'm super excited, but so nervous. I think they said that there's going to be like roughly 15,000 rheumatologists, if I read that correctly, unless there was a typo, but I think that's what it said.
Speaker 2:Wow, with the same foundation you're going so, yes, yes, I I'm.
Speaker 1:I was invited to speak that's incredible, amazing, I, I think I have to take everyone with me, because I don't know if I can do this without you guys. But we'll see. We'll see. Uh, it's not set in stone yet. I was invited, I said yes, that's as far as it's gotten so far, and I'm terrified.
Speaker 2:I went to DC when I was like I said, yes, that's as far as it's gotten so far, and I'm terrified. I went to DC when I was like 11 to do something similar. I don't remember. Basically, I went to talk to senators to get more medications FDA approved in children, so they were trying to get a lot of children to go.
Speaker 1:Oh, that's cool.
Speaker 2:Yeah, it was really cool. I don't remember much of it because I was so little Was it terrifying.
Speaker 2:No, because I don't think I really realized the magnitude of what I was doing. And, you know, instead of just having people write in, it's like no, it's more powerful to see the kids that need the medication and hear their stories. So at the time I was just like, oh, I'm just talking about my life. And now, looking back, I'm like, oh, my gosh, I did that so young and I wish I was a little bit older to remember it. But this is going to be something you remember forever, and especially, yeah, getting to speak is that's going to be so cool.
Speaker 1:I can't wait to hear about it If I don't check it out. You will, you will also you know your story so well.
Speaker 2:It's not, oh my gosh, present something like it's you so?
Speaker 1:you're gonna do this. I hope that's what they're asking. I mean, I could talk about my story all you want. If you're asking me to talk about something else, I might freeze. That's true. That's true. Yeah, we'll see. But uh, I would love to see everyone there. That would be awesome. Uh, I do know a few people that might be there. I don't know if you are familiar with um Eileen. Okay, she's going to be there. She's a speaker. I can't wait to hear her. I've been dying for this kind of stuff so yeah, great.
Speaker 2:Well, well, it's right around the. I mean, it feels right around the corner. I feel like time is going so quickly, but this is great, it's awesome.
Speaker 1:I know Well and I think now that we've met our little group of people, I'm kind of like can I drag you guys everywhere? Can you be at everything I ever go to in the future?
Speaker 2:Yeah.
Speaker 1:Just be a little team, little yeah, our little tribe. So okay, is it?
Speaker 2:hard for you to remember your early experiences with, with your health. I mean, I don't remember, obviously, being diagnosed at all, because I was just a baby. Um, yeah, I my mom kept a pretty detailed medical journal though when I from when I was diagnosed in early ages. So, um, going back and referring to it, it's just interesting, just because I don't remember a single thing of it. Um, really, my earliest, my early, it would crush up my methotrexate and put it in applesauce and I hated it. I hated it and it was every Sunday and I hated Sundays because I didn't want to eat it. And then I got old enough and I would actually take the pills or then I would actually take the injection.
Speaker 2:But those are, like, I think, my earliest memories of having to take medicine or having pain and just hating sauce. To this day, I won't eat it, I won't eat it. Um, but yeah, I think, uh, like I remember some instances in elementary school and middle school and just like being different and having accommodations and kids not understanding. I think that was like the biggest challenge is just like feeling different than my peers and then it's funny, I feel like I blocked out a lot of the times I was really unhealthy, like the pain. I don't. I really don't remember the really really hard times because I think my body just doesn't want me to. My biggest flare-up I've ever had was when I was a freshman in high school. I remember that because I was obviously a lot older, but yeah, the times I was younger I don't remember as much. Honestly, that's probably a good thing right, yeah.
Speaker 2:Yeah, I think so.
Speaker 1:And I would think, being diagnosed so young, you probably don't know anything different. I mean, this is your life.
Speaker 2:No, I really don't, and I really never even went into remission either. I think my doctors at the time were pretty sure I was going to grow out of it, because a lot of times pediatric cases do, and I did not, which is unfortunate. But I, like you said, I don't know anything different. So I honestly, yeah, I think I think it would be harder to you know be diagnosed when you're 12 or something. You're like what do you mean? Like I've had 12 years of health and nothing was a pain, or I didn't have to do anything different and now all of a sudden, everything's changed. So, yeah, not that I'm, I mean more, more unfortunate for my family that had to advocate for me and you know, figure that all out when I was such a young age.
Speaker 1:but yeah, it's just kind of like I don't know any different, so it's just a part of me so I'm going to bounce all over the place, so don't mind me here, but what I want to dive into also is you are an actress and you've done some fun things. How has that worked? Being being in, you know, with all, with all these people relying on you are they pretty understanding? How does that go?
Speaker 2:You know, I think the industry, entertainment industry has changed a lot. Even in my lifetime, when I was younger, we didn't tell anyone. We didn't tell my agents or managers. We thought that hearing that I had arthritis would make them not want to give me the role because they would worry about, well, what if she can't come to set today, or what if she's not feeling good? Or especially as a kid it's like working with a kid is hard enough as it is, so let's not add anything more challenging on top of it. So we didn't tell anyone. It's almost like trendy to you know, be different or have something, or as awful as it sounds, it's it, it's awful and it's not because it's so, it's so much more well, like accepted and like you would never not get a role because you have these challenges or and if you did, oh my gosh, that would cause like an uproar, and so it's.
Speaker 2:It's very different and I'm obviously very vocal about it and I've never I've never, thankfully had been in a really bad time when I've been filming something. So it's not like I never needed special accommodations or like, oh, I can't do this today. I also think you're just all. You're on such a high when you're working that you don't realize the pain you're in or what you're doing, until you wrap and you're like, oh my God, I just did a night shoot and it was freezing and I was dancing or covered in blood. I've done I don't know, I've done weird stuff, but it doesn't hit me until the production is wrapped or you go home for the day and then I'm in a lot of pain, but you're just so blessed to be doing it and excited that I've just always been able to push through. But that all being said, now I would feel way less stressed of going up to you, know someone, and saying, hey, like I'm really having a bad, I can't do this because it's so much more accepted now than it was when I was a kid. So it's cool to see that change and to see the acceptance and, like you know, it's not taboo, Like people want to hear about it and you want to share it.
Speaker 2:And I actually just saw Daisy Ridley a few weeks ago. She just came out that she got diagnosed with Graves' disease and she's been struggling with it the past couple months or something. I didn't read the full article but I was like, oh, that's so cool. I feel like at one point that was not cool that she got Graves' disease, but that she's so open about it and I feel like that at one time would have been something that she would have just dealt with behind closed doors. And now she's. Like you know, people are talking about it and I always liked that. I like being able to look up to people that you know I admire and to see that they're dealing with something similar. You know, makes it feel more like we're all human you know, I think that's a really good point.
Speaker 1:And you know, we've watched people like Christina Applegate or Selena Gomez. I mean, we've watched all these people talk about their health journey and people do. They look up to them. It's like you're our.
Speaker 2:I have Selena. If you could see that picture back there. That's Selena. Oh, she's like. I love it. Such an inspiration. I know we talked about that, but I love it yeah.
Speaker 1:Well, you are going to be the face for RA, for us. I hope so, and I'm still going to. I'm going to keep putting this plug in, but I want to see you on her TV show.
Speaker 2:Oh gosh, me too I would. I manifested I want to work with her or for her in some capacity. I just want to connect with her so badly so I'm also putting it out there.
Speaker 1:Yeah, I just I love the group of them together and I feel like adding you in there. That would be so much fun. I could just see it now. So, yes, let's pitch it. I'm so down, come on guys, we want Alexa on there. Please do it. I love that show. I can't wait for the next season. I know, okay, anyway, moving along. So social media has become a powerful tool for raising awareness, just like we were talking about. So how do you use your platform to spread awareness and educate others about invisible disabilities?
Speaker 2:Great question. I think I use it so much as a patient or as a user, especially when I was diagnosed with Graves' disease. Like I said, that was such a like what is this? That the first thing I did was I typed in the hashtag on TikTok, like I vividly remember typing it in, and I wanted to see other girls my age or other women my age who were dealing with it and what their experience was like. Because it's just so you know, it's user-friendly, I'm able to understand it. It's not in medical jargon.
Speaker 2:I just wanted to know what I was in for and I felt I learned so much from them that I figured I want to do the same thing for other people and obviously I'm way more educated in RA and fibromyalgia.
Speaker 2:So I just I'm not like I don't do it every day, I don't even do it every week, but when something is really on my mind or affecting me or I feel like someone else probably relates to it, I just either make a reel or a TikTok or I'll do a whole story post about whatever is on my mind or whatever I'm dealing with at the time.
Speaker 2:And it's crazy how many responses I get from it because, like I said, I don't. I don't do it every day. That's like it's not like my my thing that I, you know, want to talk about it every single day. But when I do, I always have people respond and they're like, oh my gosh, I feel the same way. Or they ask questions yeah, so it's such a great tool and obviously there's good and bad sides to social media. But if you use it for the good and you just want to connect with people that are experiencing similar things, or you want to, you want to hear their stories or maybe what their treatment plan is like, it's great. I love that we're able to use this tool for that reason.
Speaker 1:Absolutely, and I think that's a great testament and encouragement to others of of why they should be doing this. You know this If you have a story to tell, get out there and share it, because somebody needs to hear it, somebody needs to know that they're not alone in whatever it is you're dealing with. So don't be afraid.
Speaker 2:And there's so many just different stages of like. I know, whenever the time comes, that I want to have kids, it's going to be a whole new ballgame and learning experience. So I'm going to go back to TikTok or social media and type in, you know, pregnancy and rheumatoid arthritis and hear other moms or pregnant women and that's. You know, it's kind of comforting and it's like you know that other people are out there living it rather than just hearing about it. It's like you're seeing it and you're in it with them and like you could check in with them or how's it going, you know, oh, how are you feeling today and that's. I think that's what I really like about social media is just the accessibility to people all over the world you know, definitely, definitely.
Speaker 1:It's my favorite, and you know I love going over and watching your tiktoks and several others. I don't really make them as much as other people do I'm probably more on instagram than anything, but I love watching what the rest of you are putting out there, and I think you had a good point. Um, you know, whatever we are currently dealing with, that tends to be what we talk about the most, and, and so if you're having an ra flare, you're probably going to be talking about what's going on with that RA flare, but you know, if it has something to do with something else, you know. Example, when I lost, when I started losing hair, I started talking about alopecia more, and so that's just that's what we do as as creators, I guess you would say, is we share about what our struggles are, and that helps people. Yeah, so my next question for you was how do you respond to people who make assumptions about your health just based on how you look?
Speaker 2:that's a good question, because I'm kind of I can be a little bit fiery, or I think my response has changed a lot over time. I think especially the hard thing for me is I look so young and so healthy. So it all kind of started with like using my handicap placard, when I would start driving by myself and I'd put it up and I would just get death glares. And I would just get death glares or people would just come up to me and yell at me for how embarrassing it was that I'm using like my grandmother's or I should be ashamed or, you know, demanding that I tell them what's wrong with me. When I was younger, I would just I would freeze, because I would just be so in shock that people would have the guts to confront a stranger in the way that they were and using so much like hatred towards me. Um, so I would, I would freeze. And then, as I got a little older and more confident, I um, I would get kind of angry and I'd snap back.
Speaker 2:And now I'm at a point where I think those those remarks come from just miseducation and not knowing, and of course it's so easy to get annoyed or irritated. But I really try to say like you know, a lot of people suffer from things that you can't see, and I know I look fine and healthy to you, but you really should not assume that you know what my everyday is like, because you absolutely don't. And usually that you know what my every day is like because you absolutely don't, and usually that you know quiets them. And then if it's a friend that you know, maybe they don't say something rude but they'll say something snarky, and then that just kind of opens a conversation of like oh, I have rheumatoid arthritis, oh, what is that? And then it's like a.
Speaker 2:It's a learning moment for both of us because I, like I said I would, I went from being like shocked and then to being angry and now I'm like no, this is actually a beautiful moment to like share with someone and not not get into a fight or not like have them make me cry, but just like I'm going to, I'm going to hopefully teach you to be more mindful about people, and I'm going to hopefully teach you to be more mindful about people, and I'm going to use this as a time to like exercise, my, you know, open the doors to a healthy conversation and hopefully they take something away from it you know yeah, absolutely.
Speaker 1:And I think you know years ago probably 10 years ago I would get so frustrated and I would get so snarky with people. And I had a friend and I'm curious if you ever had this happen to you she was trying really hard to talk me into juicing because she was convinced that all I had to do yes, all I had to juice with her for a week, every meal, all day long, juice with her, and by the end of the week all my inflammation was going to go away and I was going to feel great. So have you had people like that in your life and how did you deal with them?
Speaker 2:Oh, yeah, I mean, I still do. It's like have you tried hot yoga? Have you tried the carnivore diet? Have you tried? Like always? And what I have to remember is that it really could work for someone. You know, like the carnivore diet could have really cured you and I'm so happy that it did. But just because it worked for you does not mean that maybe it will work for me. And I kind of just say like, yeah, I've tried everything under the sun. I kind of just try to shut it down because I don't really want to get into it and I don't think they realize the severity of it. And so, yeah, I definitely have had so many suggestions and trends of things I should try, and I'm just like, yeah, I wish it was that simple.
Speaker 1:I wish it was that simple. And you know, there's things that we can do that might make our pain a little less or just help with some of our symptoms and, and you know, I do like doing yoga. That helps loosen me up and it feels good, but that is not going to cure me Right. And you know, I think when we've all dealt with this, we try all the things.
Speaker 2:Yeah, oh my gosh, try everything, especially when you're in a flare or something like, cause we're desperate. As a kid, my mom would try the weirdest stuff, like just because she just didn't know what else to do. And so, yeah, when desperate times fall for desperate measures.
Speaker 1:Absolutely. The more desperate we are, the more crazy of the things we're willing to try. Yeah, literally.
Speaker 2:Yeah, yeah literally yeah.
Speaker 1:So what advice do you have for others who are struggling to advocate for themselves in the health care system?
Speaker 2:Well, I think I think it's important to really have your priorities of what you want, either like written down or well rehearsed, especially before you're going into a doctor appointment. I always write some sort of checklist of the points I want to cover or things I want to try, or questions that I may have, and because when you're in there and you're in the moment, it's so easy to forget, or you get on a tangent with your doctor or they try to lead you astray, and so if you just always have something that you're like, no, I really, really want to talk about this and I'm not going to move on to my next point until I get some sort of answer, or yes, Okay, let's test you for that. Or yeah, let's try this, and then I'll move on to my next point, cause I think it's easy sometimes for doctors to almost silence you, and it's not because they're trying to, they probably don't even realize it but they have the next patient to get to, and so it's really easy to get your 20 minutes or 30-minute time. It just goes by and you leave and you're like, oh my gosh, I didn't ask what I wanted to ask. I didn't get out of that what I wanted to. So I think it's really important to go into every appointment with really clear things that you want out of it, whether it's tests you want done or a new medication, or whatever it might be.
Speaker 2:I also think it's really, really beneficial to have someone go with you, whether that's a partner or a family member.
Speaker 2:My mom has literally been through everything with me since I was a kid, so she knows it just as well as I do, and so I still find myself like sometimes I'll get emotional when things are told to me or if things are bad, like I have, you know, brain fog, and so it's it's kind of helpful to have her, or someone like her, to keep me on track of, like hey, remember what you wanted to talk about next?
Speaker 2:Or, you know, not only is she there for moral support, but she's also very encouraging and, like um, gets me to the next point that I have or that I need to go over. So, yeah, I think have an advocate for you as well is really important. Yes, you want to advocate for yourself, but you need you yourself need an advocate too, because it's hard and it's easy to get what you need or what you want, and so I always stand by those two things. It's like I have a clear list or something of what I want and then, if I can, if someone's able to have someone go with you, just to keep the ball in motion. Basically, if that makes sense.
Speaker 1:Yes, and those are really important to think about because you never know, like you said, you never know if you're going to have that brain fog moment, or maybe you're caught off guard by something they're telling you. What if you walk in one day and they're saying, oh, you've got a lot of inflammation in that knee, let's drain that today?
Speaker 2:You might have Wait a minute. I wasn't ready for that.
Speaker 1:Yeah, exactly. And then you had five other things you wanted to talk about, and now it's like it gets derailed yeah, exactly. So, speaking of that that, have you ever had to have anything drained? Oh, yeah.
Speaker 2:I actually several times, but one of them was so strange I got put on Accutane for my skin and Accutane can cause joint pain. It caused an entire joint flare. My knee blew up in like less than a week. It was crazy how fast it reacted and, yeah, I had to get it drained and I think they've also tried to drain my ankles at times, but those are really hard joints to drain, so that was really unsuccessful. But I've had a couple knees drained in my lifetime emotionally, have you Not?
Speaker 1:yet I've had lots of injections, uh, but that's about it. Well, I had surgery, but I don't think that was necessarily because of my RA. I had I shredded my bicep somehow, oh gosh, um. And and then I had some uh, what are they called? Bone spurs in my shoulder. And what was the other thing? Oh, an impingement. And so I had to have shoulder surgery just over a year ago. So that was probably the worst thing I've had to deal with, but I don't think it was related to my RA. Maybe my RA made it worse, but shredding my bicep was my old fault.
Speaker 2:That's insane. That sounds really painful.
Speaker 1:It was when we were getting ready to move. My daughter and I were moving some Rubbermaid containers from our garage and I was carrying one. I was walking behind her. The lid detached from the container and fell. And when it fell I tripped and of course I went tumbling over it and I was trying to catch myself on the cement and I put both my hands out and something felt really awful all through here and I just thought you know, like I, I don't know, like I just angered it. Yeah, I like I landed funny, like I just angered it. You know, I hurt myself all the time, I'm used to it. My daughter thought the same thing and it was not until six months later that I found out that it was no longer attached.
Speaker 1:Actually, oh my gosh, yeah, yeah, yeah, it was pretty awful, I don't recommend it.
Speaker 2:I, yeah, knock on wood never again.
Speaker 1:I almost feel like if we trip, we need to just learn how to roll yeah, we just need bubble wrap all over us at all times.
Speaker 2:How about that?
Speaker 1:Pretty much. That's probably safer. I don't know about you, but I wake up with random bruises every single day and I have no idea how I get any of them the other day and I'm like this doesn't even make any sense.
Speaker 2:It's not even in a place that would get hit by something. It's like my thigh. It's so weird.
Speaker 1:Yeah, doorknobs are too high. Like what did I run into?
Speaker 2:it's not our fault it's just a thing, all right, what do you stay?
Speaker 1:okay, let's backtrack. I don't know what I'm saying. How do you stay motivated and maintain a positive mindset despite the ongoing challenges of living with chronic illness? How do I?
Speaker 2:stay motivated positive, motivated.
Speaker 2:Yeah, I think it really depends on what where I am in my pain, you know it's. It's obviously really quite hard to stay motivated when you wake up every day and everything hurts and you don't want to work out or, you know, cook a healthy breakfast, or you just kind of feel down. Those days I really just try to surround myself with friends and family or just have things that make me feel good, whether that's like books or food or movies or just things that I look forward to doing something to get me there at the end of the day. You know like, oh, I know that at the end of the day. You know like, oh, I know that at the end of the day I'm gonna go have an ice cream or something like something small.
Speaker 2:I think those get me through really tough times and but times where I'm feeling no pain, I really I'm just thankful that I'm able to make it to my Pilates class or I'm able to go to work or see my friends or get in the car and go somewhere, because there has been so many times in my life where I can't even shower by myself or I've had to be completely dependent on my family. So you know on days that I'm feeling lazy, but I'm not. It's not because I'm in pain, I'm just feeling lazy. I'm like, no, you're so lucky to be able to go on a walk or go on a hike or something like go do it. And I think that keeps me, that keeps me going, just knowing that there's been times that have been solo. So I'm so thankful for the times that I'm well enough and have the energy.
Speaker 2:I think also on bad days, I really like the saying like it's just a bad day, not a bad life, because I think when you're in it, it feels never ending and the pain is never going to go away. It's never going to get better, and that's just not true. You know it always, it will come around. It might take a long time, but I think just reminding myself like this is just temporary, just trying to keep as positive of a mindset as possible, which is hard and I've said to other people, sometimes I think I'm more positive for other people than I am myself. Like I want to give so much hope to other people that when I'm down in the dumps it's like no, you need to live by what you tell everyone else. So it's not like it's not perfect. I have really bad days but you know, I just try to try to stay positive and surround myself with happy things and people that love me.
Speaker 1:And I think you do a really good job of that. I really do.
Speaker 2:I think so. I think I'm so thankful for my friends and my family. I think so. I think I'm so thankful for my friends and my family. I think it's taken time to like find the ones that are so understanding and like check in on me, and I'm very, very grateful for the people that are around me.
Speaker 1:Absolutely Now, I know we talked about this back in.
Speaker 2:Denver, but I think this is another important topic to bring up. Experiences with prednisone Gosh the worst, it is the worst. Yeah, I, I was on prednisone in my freshman year of high school and I like my high school freshman photo. I just can't stand it because I just don't even look like myself. I just have this ridiculous moon face and I, yeah, I hate prednisone. I hate the way it makes you feel, can't sleep. You just don't feel or look like yourself. Thankfully I haven't. I was on it recently because I had COVID and I could not get rid of like the dang cough and I was having all this chest thing going on. So I was on a really short first of it, um, and even then, like for that week I could not sleep, like it affects you so quickly. So, yeah, I avoided it all at all cost, if can.
Speaker 1:I'm right there with you because I know there's absolutely benefits of it. But it says in my chart that I refuse to take it. Because I refuse to take it.
Speaker 2:Oh, do you really now?
Speaker 1:Because the last time I was on it I gained 40 pounds. I was on it for quite a while to pull me out of a deep, deep flare, because it was early on in my journey and I'm sure I needed it, but I feel like I'm pretty okay enough well-controlled now that it's like I'm still trying to lose some of the weight that you caused for me to gain. So no, thank you.
Speaker 2:Thank you. Yeah, Wake, I mean, which is just another thing that you're like. Well, it's not even like I'm a normal person and can like run five miles a day to burn this all off, Like my body's not made for for for activities like that, and so it's just like this never ending rut of. I totally get it. It's the worst.
Speaker 1:It's a roller coaster, it really is.
Speaker 2:We have our. We have our good days, our bad days, and then we have the side effects.
Speaker 2:Yeah, side effects can be really brutal what do you feel has been your worst side effect? I mean, when I was younger talk about, I said earlier, I don't remember much of the pain. I do remember just always having stomach problems and nausea with the methotrexate I'm pretty sure that it was yeah, and then just try and then finding medication to counteract the side effects. And it's just like, oh my gosh, now I'm on all this medication to counteract side effects for this one drug but now I'm on like five, yeah, stomach problems. When I was younger I've also had really bad headaches. I know you have migraines as well, migraines more so now that I've been older but those can be absolutely debilitating and, um, those are really tough for me. I'm not like, if I have a headache, just don't even, don't even bother speaking to me because I just can't focus, I can't function. I think nausea is just the worst. Nausea, stomach and head, I think, are the worst.
Speaker 1:They absolutely are. Yeah, and a lot of them. That is the side effect, and some of them they go away over time, but then some of them not so much, and, like you said, you have to take something else to combat that, and that's not fun either.
Speaker 2:Yeah, and then weight gain too, especially my age. I'm so hard on myself, even though I know it's not my fault, it's just still hard to look at other people. I'm just so I compare, and it's not my fault, it's just still hard to look at other people. I'm just so I compare, and it's an awful mind game I play with myself.
Speaker 1:Yeah, it's a no-win situation because you can't help. But look at other people going oh, they have it so easy. Yeah, why can't I just do things the way they do things?
Speaker 2:Right. And it sucks because our bodies are just different and I've literally even gone as far as like why can't I just be on a medicine that the side effect is like weight loss, like that'd be great, that would be great. Why is it always the opposite? You know, like I'm never on something that's like a cause weight loss. It's like may cause 20 to 30 pound weight gain. You know, know it's like. Thank you.
Speaker 1:Thank you so much for that. So, looking ahead, what are your hopes and your goals for your advocacy and for your life in general?
Speaker 2:Yeah, like I said, I kind of just started getting back into the whole advocacy thing probably in the last couple of years and I've so enjoyed it and I've met really great, like lifelong friends in person and online all over the world, like, which is crazy. So, I think, being able to go to more events, whether it's for specifically arthritis-based things or just chronic illness advocacy invisible I'm super passionate about like spreading the word of invisible diseases, because I just think it's like really even now just not talked about enough. So continuing my online, you, online posting and trying to reach people that way, some in-person things Also I act, yes, but I went to school for writing and I'm writing a novel and the lead character has one, so I would love to talk about the future. I've always wanted to be like a published author and so I think, being able to obviously live my dream of being an author but also talk about something so important to me and put it in like the way I would want to have read it if I was, you know, the reader, because I think so many, so many books with ill protagonists are so like down and it's like the whole book is about their journey with the diagnosis or, you know, it's like trying to overcome the diagnosis where I want this character that I'm writing like she kind of same thing, as I had it for a really long time. So it's just it's a part of her and it's not.
Speaker 2:It's like maybe half of the book is about the disease, the other half is something else, because that's that's the reality. You know, it is a part of you and there's going to be parts of your life that it's going to consume the whole dang thing. But other times I, you know, I have friends and it takes months for them to ever even know that I'm sick and they're like what? I didn't know this. You never talk about it. I'm like, yeah, well, I'm doing well now, so there's really no reason to bring it up. So, yeah, that's a goal, like a goal I have for the next year or two I'd love to be able to get that out there.
Speaker 1:I love it and I want to read it as soon as it's out.
Speaker 2:Yes, well, maybe be one of my beta readers, cause I'm going to need people that are, like you know, familiar with RA and see if I'm doing a good job of like explaining it to someone that may have never heard of it, cause I don't want I don't want this book to only be for people that live with the disease. I want it to reach other people so that they're familiar with it now too.
Speaker 1:I love it. I got you. Yay, anytime you need me, as long as I get a signed copy too. Thank you, of course. All right, so we have talked about so many things. Is there anything we haven't covered that you think you need to mention before we go?
Speaker 2:I just want to encourage people to reach out, like you know, on social media or in your workplace, and you just feel uncomfortable, needing that extra help because you're worried of what their reaction might be or the way that you know you're not sure how to navigate the conversation. You're really never going to know unless you ask. So whether you're just asking to have like a pen pal to just share stories with online and check in with hey, how are you feeling today? You know, be the first person to message that that creator or that person like, be that, be that person for yourself and in the workplace. If you need help, don't be afraid.
Speaker 2:And yeah, it might not go well, like I've had a lot of times where I ask for things and it doesn't go very well, and like I've left schools over it, I've left workplaces because of it, but there are going to be the people that are super understanding and they're like, oh my gosh, of course, like I'm so glad that you asked because, yes, there is a solution I have for you. So it can be scary and the confidence comes with time, definitely. I mean I still am, you know, learning myself. But you're never going to know unless you ask or unless you put it out there to the, to the universe, to do whatever. But yeah, I think, just what do you have to lose, you know?
Speaker 1:Absolutely. I could not agree with you more. What do you have to lose? You know, absolutely.
Speaker 2:I could not agree with you more. Thank you so much for coming. This was thanks for having me this was great.
Speaker 1:It was such a pleasure having you on, as usual, my spoonie sisters, until next time, don't forget your spoon.
