EPISODE 1: Charting Your Course Through Autoimmunity

ALYSIA:  Hey Warriors, welcome to Autoimmune Adventures.

BECKY:  We're your autoimmune sisters here to remind you that you're not alone in this fight.

STACY:  Whether you've just been diagnosed or you're a seasoned pro, or maybe you're a supporter trying to help a child or loved one navigate a disease, we are here for you. And this is a space for information and support.

ALYSIA: Today, we want to introduce our podcast. We will be sharing our personal experiences along with some tips and tricks that we've learned along our way.

BECKY:  So put on your comfy pants, grab your favorite beverage, and get ready to be empowered.

STACY:  Hey everyone, Stacy here. I'm the oldest of the three, and you'll learn a little bit more about me in episode two.

I'm married to a really great guy. His name is Doug. He speaks fluent French, and he likes to sing Queen's greatest hits in the voice of Kermit the Frog. He has an unending list of history facts and trivia, and he has made me laugh every single day for the last 20 years. I have two fur babies, one's named Leason, which means “little one” in Danish. She is a mini schnauzer with an attitude. Then I have Romeo. He's a very stubborn little pug, and just like Romeo from Romeo and Juliet, he's a lover, not a fighter. As for me, I love the three T's: I love to teach; I love to travel; and I love talking. I've taught at the university and most recently I've taught seventh grade English.

With all the craziness in the world, I decided to start my own business and leave the classroom to become a coach. Now, I help teens manage their stress to win at life and at school, and I love my career. I've traveled all over the world and 40 of the U S States. So, yeah, I teach, I travel, I obviously talk, and I've never met a stranger. So welcome to our family. I'm glad you can join our journey.

BECKY: I'm Becky. I'm the middle sister, and you'll hear more about my autoimmune journey in episode three. I have been married to my best friend for almost 15 years, and he brought to our relationship my three wonderful children, who are now all adults. Two of them are living with their significant others and our youngest is going to school to get his engineering degree.

We're living on what I call my little piece of heaven. We have a small farm in Northern Texas. We have a bunch of animals. We have wildflowers year-round and sunsets that make my heart endlessly happy. I enjoy traveling, reading, writing, cooking, gardening, and especially spending time with my family, my friends, and my critters.

I've learned that my autoimmune diseases do not define me, and I am doing this to help people understand that about their own situation.

ALYSIA: Hi friends, I'm Alysia. I’m the youngest of the three sisters. I’ve been happily married to my very handsome husband, Joe, for 24 years. And in that time, we've moved 15 times, but we’ve ended up in Minnesota, in the twin cities. I am a mom of five children, ages 23 down to 12. I have four girls and a boy. I love food; I love entertaining; I love cooking. I have a passion for finding and making good gluten-free food. And I love to feed people. I love to learn about nutrition, especially as it pertains to gut health and autoimmunity.

I am a lunch lady at our local middle school. And I quite enjoy that. I think middle schoolers get a bad rep, and I love them. I try not to let my autoimmune diseases run my life or overshadow the many blessings that I have. And to that end, I have found that having supportive friends and family and a community that can celebrate the highs and commiserate the lows with me has really been key to managing my health with an optimistic outlook. And I know that not everybody has that kind of a support system. If you do, that's great. We are so happy, and we would love to hear your successes, but if you don't, you are in the right place. We really want to be your friends, and we want to help you on your journey. So, I hope that you guys can not only learn from us, but also find validation and comfort and support and solidarity in our growing community.

So, now that we've introduced ourselves, let's just jump right in. We like to compare being diagnosed with an autoimmune disease to being dropped at the foot of a big, ol’ mountain that you are being forced to climb, whether you want to or not. And you might not know where the trail starts, or even if there is a trail - you might not know what the possible dangers are or obstacles, and you might be scared, nervous, or uncertain of what to do or what not to do. But one thing is certain, the mountain is not going anywhere, and you cannot go back the way you came. So, you've got to start climbing. We as sisters challenge you to embrace this as an opportunity to begin a new adventure, albeit an unexpected one.

So, when you're getting ready to go on a hike or a road trip or any other kind of adventure, there are always essential items that you have to pack, right? Like you need your food and your water and your gear and proper clothing. You need to be prepared, and navigating your autoimmune journey is a lot like that. It helps to have some knowledge tucked away in your proverbial backpack, if you will.  Between the three of us ladies, we have 10 different autoimmune diseases, and we are not unfamiliar with the struggle of starting a new expedition only to find out you're really just not entirely prepared for it.

Collectively, we have nearly 50 years or so of experience living with this struggle, and during that time, we have learned that there are some “supplies” - quote unquote - that are essential to have on this journey. Regardless of which of these diseases we are dealing with, these key principles are needed to make the best of this unpredictable adventure, and we call these our big six.

First and most importantly, you're going to need a positive attitude and a sense of humor.

BECKY:  It is really crucial. We're hoping you can find that as we do this podcast together. We've many times said to ourselves that we would rather laugh than cry, and it's just kind of something you want to do because there are going to be hard days. So, having a sense of humor is important.

Second, a healthy diet with minimal processed foods.

STACY:  The food we put in our bodies is what fuels us and helps us to be successful. If we're feeding ourselves good things, we're going to feel better. And when we feel better, we can do more. So it's important that we think in terms of the cleaner my food is, the happier my body will be.

Third, detoxing your body and supporting your liver and kidneys.

ALYSIA:  Yeah, so, detox is kind of a buzzword these days, but it's really important when you have autoimmune disease to take good care of your liver and kidneys, because their function can really be impaired by autoimmune disease. So, we'll talk about ways to do that - ways that you might be familiar with and ways you might not be familiar with.

Fourth would be keeping active with gentle exercise.

BECKY:  And for those of us - like me - who aren't big exercise fans, there are a lot of good ways to still do this. And, you don't have to make it a big, old tough workout. And we will go into that in future episodes. Ways that we can exercise that are both beneficial and enjoyable.

Fifth is getting good quality sleep and resting when you need to.

STACY: It's important to allow our body to heal. And one of the best ways we can do that is to get good quality sleep. Sleep allows us to have that energy we need for important things, and. having an awareness of when we need to rest helps us to get through any given day, so those are important. 

Last, and certainly not least, of our big six is stress management and a strong support system.

ALYSIA:  Everybody knows what stress is. Everybody knows, ways to manage it, even though we're probably not all very great at that, but really we also want to talk about making sure you have a good support system.  And we are hoping that you guys will see us as part of your support system, part of your adventure team. And we want to encourage you as you're finding your path, as you're scaling the physical and emotional peaks that you are going to be finding along your way.

STACY:  Now that you've got a chance to get to know us a little bit, let me tell you what inspired our podcast. As sisters we have this really strong support system, but we knew that not everyone did. And, you know, as we began to talk to our different friends and the people that we would meet that had autoimmune disease, we discovered that one of the biggest things that they were talking about, and their biggest concerns, were isolation and misunderstanding.

People don't understand what it's like to have a disease unless they have it or something similar. And there's a lot of isolation because sometimes you just can't go out and be social, or you can't do some of the things that your friends do, or being out in the sun all day at the lake is not an option for you. And we began to notice that a lot of people didn't have the support that they needed, and that they were frustrated and feeling alone.

The second thing we noticed is that even though there are a lot of really good support groups out there, they're usually aimed at just one disease. And a lot of people with autoimmunity have more than one disease and are trying to juggle them and figure out how to make that work. But, despite the fact that there are good support groups, a lot of the websites can be very clinical. They can be very pessimistic.

ALYSIA: Yeah. Like whine fest, right?

STACY: Yeah.

ALYSIA: Get on and whine and complain and it's, it's like Debbie Downer the whole time.

BECKY: Yeah. And we get, 'cause we're not being, we are not trying to be toxically, to have toxic positivity here. We get that there are some really bad days, some days that you don't want to get out of bed, that you feel like garbage. And it's hard when people around you don't understand when you can't do everything that you used to be able to do. But, you know, being pessimistic is not going to help. If anything, it will just make the situation worse.

ALYSIA:  Right. You, you're suffering physically and by being pessimistic, you're choosing to suffer mentally as well.

BECKY:  Yeah.

STACY:  So, we're not going to tell you that autoimmunity doesn't suck. It does. Sometimes you hurt, like constantly, and it is what it is. Going online and looking at something and having all of that negativity and then having someone say, “Oh, and you might die prematurely” is, is not helpful.

ALYSIA:  What a rosy picture to paint!

STACY:  What a lovely, lovely thing to say. So like Becky said, we don't want to be all sunshiny and fake. We know what we're dealing with here, but we do want to be vulnerable and let you see that you're not alone because none of us are going to make it up this mountain by ourselves. It's too hard.

So one of our favorite therapists, Brene Brown says this, and I think it's really important that you keep this in mind, she says, “Daring greatly means the courage to be vulnerable. It means to show up and be seen to ask for what you need.” Let me read that again – “to ask for what you need” - to talk about how you are feeling, and to have the hard conversations. And so we're here and we're willing to have those hard conversations. Because we don't want people to be alone. We don't want people to have to climb this mountain by themselves. We want to be a positive resource for the other autoimmune warriors out there.  And even when life is an absolute dumpster fire guys, we can still control our thoughts, our attitude, and what we eat for our health. We have some control here. We're not, we're not left with no way that we can make it better. There are ways we can make it better.

BECKY:  So, we have a little bit of a story to illustrate this point. Back when I was a tween and Stacy was a teen and Alicia was still a little bit of a girl, we went on a family camp out, and we decided we were going to go hiking up this really cool mountain, because we had heard there was this really awesome old mining town, and we thought that sounded like a really fun destination. Our family are all kind of adventurers, so we thought it would be good, and it did start off that way. It was a really easy hike. It wasn't bad. We were thinking we had it made, and we were going to be able to go see this cool mining town and have a great time.

Unfortunately, after we had been going for just a little bit, we realized that it was a much harder hike than it had first looked like. The trail got very steep; it was slick. We were having trouble making it. And, our parents probably heard a lot of us kids complaining, because at that point, they made the very wise decision to have us sit and take a break. And it was a nice thing to do. I remember as a kid, not wanting to go any further, but after taking a break and kind of looking around me and seeing the beauty of the trees and the forest around us, getting kind of pumped back up again and realizing there were good things to see. It was enough to get me going again.

Similarly, when you're suffering from autoimmune diseases, you can be exhausted. You wonder if you can really make it through whatever mountain or task you're trying to accomplish. Sometimes that is just simply making it through the day. And just as it's true for us, when we were hiking, knowing when to rest is as important as knowing when to push forward, and you should never look negatively on pacing yourself.

So with that, with our story, we decided to keep going. We got that much needed rest. We decided to go forward on our adventure and try and find this mining town. We pushed forward for a little while longer, the trees opened up and there was this beautiful, large meadow.

Just something honestly, right out of a fairy tale, the wind was blowing, and we had on one side, we had these really cool quaking aspen trees, which they get their name because when the wind blows the leaves shake and they look like coins almost, in the wind spinning around.  And on the other side, we had this lovely creek and there was this huge grove of pine trees, and the wind was making it look like they were on fire because there was so much pollen on the top of them that they looked like they were on fire.

It was just this gorgeous, gorgeous sight that, really as even as a child, I remember took my breath away. It obviously was not perfect. Nothing is, but I also remember as much as I remember this being such a beautiful thing, it was hot, we were out in the open sun, we weren't in the shade of the trees anymore.  It was hot, and when I sat down in the grass to enjoy the view, there were little grasshoppers everywhere, which are just miserable - I hate them - but the point being is that it wasn't perfect.

It was beautiful though, and it was magical, and it was, it was something that we, it was a core memory for all of us. Just like when we're having a struggle, our autoimmune struggle of going up our mountain of autoimmunity, we need to recognize that nothing is ever going to be perfect, but we can stop and enjoy beautiful moments, because we will have them, and we need to recognize them for what they are, and recognize that it's okay that things aren't perfect. We can still find beauty in the journey.

This is a really important note here. At this point, we didn't make it to the mining town. We found this beautiful meadow. We had this really nice stopover, but we actually exhausted all of our resources making it to the meadow. We didn't have enough food and water to go any further. And I'm sure my parents were lovin’ having five kind of whiny kids with them. But it, it was, we had this beautiful stopover, and we realized that was where our journey was going to end for the day because we just didn't have the resources to go further.

Similarly, when we have autoimmune diseases, we have plans in our lives that sometimes have to take a turn because we just don't have the physical or emotional resources to accomplish them. But again, that should not ever stop us from finding joy in the journey and for finding the beauty in things. Yes, we experienced some disappointment in not finding the mining town that we had originally hoped to, but the hike we went on, being much different than what we had originally planned, was still a core memory for all of us because we chose to embrace the beauty of the path we followed instead of mourning the path that we couldn't take.

ALYSIA:  I love that. And I feel like it is important to note that it's, it's okay to mourn. The path that you couldn't take, it's hard having a diagnosis, dropped in your lap and having to take a path that you weren't planning on taking. And it can be really painful to let go of the plans and the goals that you might've had and be willing to take a different path, a different journey.

But we know from experience that when you embrace that as an adventure, and take the time to mourn, and, and feel all those feelings and then say to yourself, “I choose to embrace this new adventure with an optimistic outlook. I'm not going to be dwelling on what can't be. I'm going to focus on what's ahead of me and what I can do.”

STACY: And I think this is also a really good example of how you can find perfect, beautiful moments in the midst of trial. We don't have to let the difficulties of our life get in the way of us seeing the beauty that's around us. And when I think of this hike, and I remember what it was like for our family, I remember how tired we were, but when we got to that meadow, all that pain disappeared, even if it was only temporarily, as we were able to just like, breathe in the beauty around us. And that path that we thought was going to go one way ended up going another, and maybe we didn't know what we were getting into initially, but by the end of the hike, by the end of that day, our family had had this beautiful experience together because we still got out, and we hiked, and we took that trail.

We're going to talk about trail markers because, um, the paths that we take, sometimes we need guidance on the paths that we have to take through autoimmunity. In the real world, trail markers do all kinds of things. They're milestones, they're warnings, they let you know what type of path you're going to be on, how far you're going to have to hike to get where you want to go. They tell you if it's dangerous or the steepness of the path, those kinds of things, so trail markers can be extremely useful.

In autoimmunity, we like to think of our trail markers as anything that lets us know how things are going to be. So, it might be a visit to the doctor. It might be waking up in the morning in pain and knowing, okay, I'm going to have to rework this day's plan because my trail is not going to be able…I can't do a steep trail today.

ALYSIA:  I've got a mini path today.

STACY:  It's a kiddie path today. And then some days you wake up and it's like, I think I'll picnic on this lovely plot right here because that is all I have in me, and it might even still be you wake up, look at the clock and go, Nope, I can't hike today. I just don't have it in me.

We all have different experiences on the daily, and that's kind of how it is. But there are trail markers out there that can help us. Give us kind of a status of our physical and mental health, let us know how we're doing and keep us on our path. And if we have goals, and if we have ideas of what we want to accomplish, we have to also be kind and gracious with ourselves and understand that we're not always going to be able to hike the steep trail that we may have been excited to go on. And we will spend some quality time in the next few months talking about ways to deal with those kinds of experiences, but, you know, having the right kind of doctors, those kinds of things.

So, one other thing we want to mention is the idea of power bars. Now, when you go on a hike, you can have a power bar that will give you extra energy, but we're not really talking about that. What we're talking about here is the idea of a health status bar, like they have in video games. So, if you're playing a game online or anywhere else, you might have what's called a health status, and that tells you when you need to eat, when you need to sleep, whether you need to go to the healer, whether you need to drink something to kind of boost your energy.

ALYSIA: Or whether you need to just stop. Just stop. You're gonna die. Stop.

STACY: So in games, those are what power bars are used for, is that health status. In autoimmunity, we have a power bar and we need to remember that we have to be our own healer, which means we need to make sure we're eating healthy, we're sleeping enough, we're taking our supplements, we're finding the best doctors, and we're filling that power bar as best we can, because it's harder for us to fill our power bars than it is for people without autoimmunity issues. It's a lot harder and before we can safely get on with life and hike where we want to, we have to know our limitations and adjust them accordingly.

ALYSIA:  Right?

STACY:  So, when we have a low power bar, we have to slow down.

ALYSIA:  I think that that is really, um, this. What this means to me is that I have to be hyper aware of my body at all times. And I've learned to do that. I've learned to do that. And in the beginning, I wasn't good at that. Um, after my initial diagnoses, and I would definitely push myself harder than I should have, and I didn't understand why when I went to some workout class with my girlfriend and she's doing it, no problem. And I did it no problem-ish, and then the next day I feel like I got hit by a truck and I have the flu or something. You know what I mean? Like you have to be paying very close attention to your body and that, and what we mean by that, that's our analogy with the power bar, the power bar equals your mental and physical health, your resources.

BECKY:  And one of the things that is key to remember is so often people with autoimmune diseases will want to compare their current power bar with what it was before they had autoimmune diseases.

ALYSIA:  Oh, that's hard. Yeah, we do like to do that.

BECKY:  It is hard, but we, we just can't do that. And it's something that takes time to figure out, but it is so easy to be like, I used to be able to do A, B and C, and now I'm lucky if I can do A, and…

ALYSIA:  I think that's, we're playing a whole different video game now. You know, you were playing one video game before autoimmune disease. Now you're playing a different video game.

BECKY:  Exactly.

STACY:  It's a, it's a very different game now.

ALYSIA:  Um, you have to pace yourself and, and that is really hard when it's something, a big life event, something exciting, something you want to be there for everything, and you, you can be there, but you've got to take into account where your power bar is during these activities.

BECKY:  And recognize sometimes even if you feel like you're doing, okay… So, my perfect example that recently happened our family, because we're kind of out in the middle of nowhere and we're able to do lots of fun fireworks, we always have a big Fourth of July celebration, and we had between like 40 and 50 people at our house for the Fourth of July this year. And I didn't realize - it was interesting - my physical therapist was the one who brought this to my attention. I've been going to physical therapy because I recently had a knee replacement, but ever since the 4th of July, you know, I, went to physical therapy yesterday and she commented on how swollen my knee was and I said, well, I think I'm in a little bit of a lupus flare. I've been trying to, you know, be really careful with my diet and do all these things, and she said, “Nah, you know,” she said, “I think you overdid it on the 4th of July.” And I was like, what?

And she said, literally, she went back and looked at my records. And because they measure my knee every time I came in she's like, “You've had problems ever since the 4th of July. I think you partied too hard.” Actually, I let the guests know in advance that I would not - because we did most of it outside - that I would not be spending as much outside time with people, and I was trying not to be antisocial, but because I have lupus I can't be in the sun that long. So I was like, “I will be joining everybody when the Sun goes down.” You know, I will be inside, and I really tried to pace myself, but the fact that my physical therapist pointed it out to me, that even though I tried to do that…so, you have to recognize with your power bar, you may think, think you're conserving it, and sometimes, you know, you have to work with it and just recognize that it might impact you later down the road.

ALYSIA:  Yep. Really learn to pay attention to your body and, and those cues because your body will give you cues. Your mind will give you cues. Yes, you gotta, you gotta pay very close attention.

STACY:  Yeah, because guys we need power for the things that really matter in life, but we have to be kind to ourselves. So, that is why we were here are here to gently remind you, you need to have a kinder, gentler, and firmer attitude with yourself. And what I mean by “firmer” is you need to advocate for yourself. And we're going to talk about this in the next episode, the importance of advocating for yourself, being there, being your own best friend, hanging out in the corner, and being the one that coaches yourself to do what is best for you, and to not let what everyone else wants to get in the way of you being able to be healthy.

There are people that really do matter, that are important, vital, wonderful parts of our lives.

ALYSIA:  That we want to give to them.

BECKY:  Yeah.

STACY:  And if that's the case, they want us here. So, we need to do what allows us to stay here and be with them. And if we're not taking care of ourselves, we're not doing the most important thing we can do, which is guarantee that we will be here for longer, because we care for ourselves the way we should.

ALYSIA:  Exactly, and I think when it comes to being kinder and gentler, um, when you said “firmer,” I was like, oh, that's where we, that's where a lot of us…well, that's not true. Some of us really do need to be kinder and more gentle with ourselves and the way we speak to ourselves, I'm sure. But when, when we talk about being firmer with yourself, we're talking about self-care. We are talking about the big six. We're talking about those things that are always going to help you feel better. Um, getting good sleep, getting good, clean food in your body, you know, that's fuel for you. Those things, those big six, we call them that for a reason. They are going to have an impact on your power bar. They're going to have an impact on your mental health. And that is why they are so important.

So, thank you guys so much for joining us on our first episode. Come back for us next week, and Stacy's going to share a little bit of a more in depth look at her autoimmune journey, and we're going to talk about the importance of being your own advocate.

Like she mentioned, if you guys have questions or topics, things that you would like us to discuss in the future, please leave a comment and reach out to us. We would love to hear from you guys. Don't forget to like and subscribe, or visit us at autoimmuneadventures.com.