ļ»æHello, Peripeteia podcast listeners. I'm so excited to bring you somebody who I just told her was like a celebrity to me. Amy Allen Clark. Uh, somebody I followed on Instagram for a long time who I thought had a really big following, and I could see why, because, Amy, you're so. Relatable. Adorable. Obviously smart, you have so many facets.
Um, I think because we're both readers, I was definitely attracted to your book gang and the stuff that you were doing there, but also you've got a health journey that you talk about and more recently, um, a sober journey as well. So this is awesome. I'm so glad to have you. Thank you for being on my podcast.
Oh my goodness. I wish I could like put you in my ears every morning. That makes me feel so good. Thank you so much for having me. You are welcome. So will you start back and start actually just sharing your journey of like. How you got on Instagram and how you started doing a following and what you do and what your background is.
Yeah, sure. So I went to college for dietetics. Just, I was thinking I was going to be a nutritionist or something like that. And ended up, uh, my husband, who's my high school sweetheart, he and I both dropped outta school, got married. Uh, he was pursuing a.com and. He just went after his goals. We ended up on the east coast with his job and things were going pretty well for a while.
We were at the height of everything like happening, but then anyone who is of a certain age may remember the.com bomb happened and my husband ended up losing his job while we were out on the East coast, and he applied everywhere. We could not find work anywhere. We had been unemployed for quite a long time.
And then he ended up getting a position back in near our hometown, which was just very strange. So we ended up making our way back to this area, but we were really struggling financially and just could not seem to make ends meet. And I felt like because I had to return back to work that first year that we were living out there with my son.
I really missed out on getting to be a stay at home mom, and I was really, really determined that I was going to make that work. So I started checking out books about the depression era and really looking to like the original homemakers, like how did they stretch a budget in a way that they were able to, you know, kind of meet.
Where they were at that time in history. And I started gathering all these like little tidbits of information like, oh, did you know you could save this or you could reuse this, or Here's another idea of something you can do with something that's laying around your house. And people kept saying like, you know, you really should write a book.
And I was like, I just can't picture myself, you know, going after something like that. And I think part of it is imposter syndrome. Like I didn't finish school. I'm not smart enough to do that. But I could start a website and that's what my husband does, so he could help me get that going. And maybe we have a spot where women who are looking to try to make ends meet in a difficult season could find that.
And at that point in time, this was in 2004. There was like terrible resources. Like you would go and you would go on a site and it would be like scrolling for days and days, like one giant file, or you would find the best information on discussion boards, which is probably still true today. But it was really, really hard to find information.
And my husband had this great design background, so he put together a website for me. At that point in time, I was just like writing all of these. Little articles and talking about how people could save money. And one of my big claims to fame was that I love to shop at Aldi. And at that point, like there was no one really shopping there.
And I would go with just $200 and feed my family for a whole month and write these recipes up and share them. And I had a, a little. Blog that called the Aldi Queen. And I would share, you know, how people could save money that way. And so I was doing all of these little things, and that was a very niche community at that point in time.
You know, it really attracted people that were already visiting those forums. But what happened was in 2008, the recession happened and that was like, you know, my Mariah Carey on ice moment, like I like pop out and I'm like, Hey guys, like I'm here. You've been dying all this time, writing your little, I'm like, did you know you could do this?
Did you know you could do this? Yeah. And there were so many brands that were looking for people that were like in that space, and I was just an. Early adopter to everything, partly because my husband's in tech, but partly because I'm curious about how to build a following. So I was one of the early beta testers of Pinterest and I worked for companies like Walmart for Kenmore.
I worked for Kellogg's, like all these big brand names. And I was teaching people how to use their products, appliances, uh, food products, uh. Craft. I got really into craft. I felt like craft's. Gonna have a moment here. I even remember, um, being at a Walmart meeting where they were talking about potentially getting rid of their craft department, and I was like, I think Pinterest is gonna be huge.
I think it would be a huge mistake to get rid of that department. It ended up being a really successful run for me, working for them in craft. I ended up selling products that were craft related. I had a knitting kit at Joanne's, like all these just very odd little side projects, but we got ourselves out of.
A serious debt situation and we were able to really turn our financial future around and then I ended up writing a book called The Good Life for Less, where I shared how we did what we did. It's just basically a manual that I would give to someone who was newly married. Like, how do I do this? Like how am I supposed to establish a budget?
Really beginner our basics on how to make that work for your family. And so I've been doing this since 2004, so it's a very long time. And part of being an early adopter is also knowing when you need to switch formats, right? Uh, our moms were not hanging out online anymore. I remember the days of just spending.
Long conversations and thoughtful conversations with people that followed my work and still follow my work all these years later. Uh, but we just don't work in that kind of environment anymore. We're lucky if someone can leave something beyond an emoji for a comet, right? We're in a very different age, and so I had hit a speed bump really with my life and my health journey.
And started to realize like I have an opportunity to switch formats. Either I fold and retire, which I would feel really proud of the work that I did. I could have done that for sure and and felt good about where I was, but also I am. Can never keep my brain busy, like quiet I guess. Like my brain is always busy and the idea of letting go of being a pioneer of something is really strange for me.
So we were starting to, you know, kind of match where my readers were headed, which was, they were maybe less doing crafting, but I did see a lot of people enjoying our book section and I had always talked about reading and that was something that I loved and we. How basically separated that into a community on its own.
Like, oh, I'll just like make that into a Facebook group. 'cause we have a lot of people that read and it grew into, I think we were around 5,500 Facebook members and it's like, okay, now we have a separate community. What can we do? How can I funnel this into a business? And I had been doing a book club for many years, but what if we made that more special?
Like what if we really enhance that for readers and. You know, with my health challenges, I had to start. Contemplating like, what can I do that's not so physical? And moving to voice for someone with a disability is really powerful. Like I could still share my message and do all the things that I was doing.
I just had to learn to adapt, uh, to a different format. So now I podcast and run a book club and a community, and that has been the new thing. So I'm up here hiding in my bedroom. Which you can see behind me, uh, just talking to authors about their writing and learning from them. And because so many people have felt, uh, pulled to my work for whatever reason for this long, a lot of them are still along since my kids were little.
And now, you know, I. Kids in their twenties, which is crazy. Uh, to, to feel a connection with someone that long is, is really special. And I feel really, really grateful for the people that have stuck around through all the different variations of Amy. How wonderful. I love it. I knew some of your background.
I did not know all of your background, so this is really fun for me and. It's no wonder I value homemaking so much. And um, I had two grandmas that were homemakers and I just shared with you. One of them passed away this morning, 101 plus years old. She also worked outside the home, um, eight children. My other grandma was a full-time homemaker with seven kids at home, and I've always treasured homemaking, I think it is.
So, so important. And I think, um, often it's unpaid, but for me, like I love to decorate for the holidays. I love to host gatherings. I love like all these little things that make a house a home, and that provide a safe. Place for family and for your children and their friends. And I think it's such important work.
And I think this day and age, sometimes we're in this like boss babe, you know, go to work, work outside the home. Something different is really valued and I really value both. I'm an entrepreneur, businesswoman like you, and also I need time and space. For homemaking and even for tinkering and for moving things around and just, um, creating the kind of the right lighting and the right food and the right home that people wanna come home to.
I think it's so important. So I love that your family was in need. You took your skills and then you turned around and you literally did both with it. Like you valued your work as homework and you're gonna figure out a way to make money at it. Mm-hmm. And you did it and you saved yourself. That is like such a, um, heroin's journey.
I just love that. And you're, you, I see you with like a cake, like a superhero cake for, for having done that and then also being a pioneer, like how cool with Pinterest and Walmart and all this. Stuff. Um, obsessed with that, of course. 'cause I, at that time I was raising my kids too, same age, I'm sure, and had my little blog spot, family blog to keep family that was outta town and out of state, informed on their little developments and what we were doing.
And I. We wanna connect, we wanna share, we wanna document like kind of what's happening in our lives when we're raising kids. So I relate to that so much. Then you went and pivoted, though. You recognized that the world was changing and the way that we connect, and then you figured out this new way. And of course I'm obsessed with reading and books and authors.
I mean, I only started this podcast so I could force people into having conversations with me that I wanted to talk to. So. 70% of people are authors, including yourself. Right? So this is just my tricky way to get to talk to all the writers. I wanna talk to you, keep referencing your health journey. Mm-hmm.
Can you share with me what that is when that started? And let's go dive a little bit deeper in this because this is a huge part of your story. Yeah. I occasionally speak about this, so I love to help the Eller St. Foundation. And May is the time of recognition for what that is. I. Had always had some level of health problems my whole life.
Unexplainable weird things that had always like, plagued me throughout, you know, life. Like I, I bruised easy. I was run down a lot. I got sick a lot. Like, I just always felt like I was fighting stuff and I. You know, I had a, a really great childhood. Like I, you know, I was very active. I loved to do dance, and when I got older I loved to do yoga.
These are things that you may hear from people with EDS because one of the traits is being very flexible. And so these little hobbies that I was into, it makes sense because I was very good at it because I was very flexible. Uh, in my thirties I started to have some difficulties. Uh, with the work that I was doing, so a lot of the projects that I did for clients, like I was.
You know, kind of explaining a little bit, we're craft and food driven. So I did all my own food photography and I also would shoot all the tutorials and knitting and doing, uh, photography for food requires a lot of fine motor movement that I don't think people always understand. There's a lot of leaning, a lot of heavy equipment, uh, doing detailed things with tiny tweezers.
You know, you're always like doing things like that. As well as like all the photo editing, which requires a lot of mouthing, like doing things with your mouse and, uh, a lot of movement with your arm. I remember a Christmas where I was really struggling, I think it was around 38, uh, to do my Christmas cards.
I just could not. Seemed to write them, like my hands kept cramping and I was having a lot of problems, uh, gripping a pencil and a pen, and so I was getting very frustrated. I remember just being like, you know, forget this. I'm, I'm done. Like, I don't even care. I don't know if they'll even make it. Some of them came back to me like, that's how bad my penmanship was because I'm like, I don't know what's going on, but I'm having a lot of pain in my hands.
And I started, uh, going into the doctor and just being like, there's something wrong. Like, I don't know what's wrong. Uh, it was traveling up through to my elbow, so they were thinking, well, you know, you do a lot at your computer. You probably have carpal tunnel or radial tunnel, and I went through a whole bunch of tests.
Everything kept coming back negative. They couldn't figure out what was going on. I was going to dance class still, like in my thirties. I had a really exciting DI dance class again, kept my brain really busy. You would learn choreography every day. There would be like a new thing, and I was really excited about it.
And I lived at the gym. I would be there for two or three classes if they were available. I loved going there and all of a sudden I started to just have injury after injury. And it was just. The most infuriating thing because, you know, it was like really throwing off my rhythms. Like I'm a perfectionist.
I like my day to be a certain way. Everything is starting to fall apart. You know, all of a sudden I have a knee going out. Like I have no idea how this is happening. Like, you know, my neck would get thrown out. I would just be like completely exhausted after these classes and I just couldn't figure out what was going on.
Um, so every day I had a different brace on. I had no idea if I was bracing correctly. Like no one had any information for me. No one knew what was wrong with me, and I was just in the pits. And I will say, um, I'm, I'm. Grew up religious, but I am not as called to it as I used to be. And for some reason I decided to join a Bible study.
And I think it was just because I felt so depressed. Like, I'm like, you know, anytime that I'm going through something particularly trying like this, the thing I go back to is religion. Like it, it's where I feel comforted. Um, and I joined this women's Bible study and I showed up and every day I was showing up with something.
So I had like a. Finger brace, and then I'd have like a wrist brace. And then I came in and I was bracing my knee. And the lady that was running the class, she started looking at me and she was like, you know, every time you're here, it seems like something else is being braced. Do you have something going on?
Like, do you know what's going on with you? And I was like, I don't know. Every, every day there's something, like something pops up and I, I cannot figure out what's going on. I've never had any problems. I'm very physically active, like I have no reason. To know why all of this is happening. And she's like, I'm gonna take you through a few really strange questions.
And it was like, can you touch the floor? Can you, you know, bend your thumb this direction? Can you do this? And I'm like, this is the weirdest conversation I have ever had. And she said, Amy, I think you have a condition called Eller Stanler syndrome. Uh, it's a condition that I have one of my siblings has, and I think you need to go in and talk to your doctor.
And I'm like, ler, Sandlos syndrome. I've never heard of this. So I went home and I'm looking it up and I'm like, this feels weird when you start reading something and you're like, oh my gosh, this is exactly the things that have happened to me. You know? Now we have TikTok and a lot of other. Formats and platforms to like find information in your community, but at that point, yeah, exactly.
I mean, I'm sure that's a double edged sword, right? But I'm like, I, I've never heard of this. Mm-hmm. And, uh, yeah, I, I was talking to my family at the dinner table and I'm like, you know, this person told me like she thought maybe this was happening with me. Like, how weird is that? And we were talking about, you know, all our fun party tricks and my kids are demonstrating party tricks too.
And I'm like, okay, this is. Getting a little strange. So we went in for a consultation for my kid who has a DHD, just a normal checkup. And at the end I was supposed to, you know, just also have my checkup 'cause we have one practitioner and you know, he's looking at me and now I have a knee brace. Like, and I do think everyone thinks, oh, you're kind of a hypochondriac, right?
Yeah. Every time you come in, there's something else wrong with you. And. My child, Ethan said, Hey mom, are you gonna ask him about our flexibility? And I said, what? No, that's not the time. It's not the time to ask. And it was like a light bulb went on over our doctor's head and he was like, oh my goodness. So he starts going through the same test.
It's like, can you touch the floor? Can you do this? He starts stretching our skin, doing all of these things, and then he's like doing it to my children. And he was like, you all three have it. I think you need to meet with a specialist. Very strangely enough, in our very, very tiny town, the woman who is like the person who gives the gold stamp on everybody's file lives in our town.
She was also someone who had a babysitting arrangement with one of my close friends. You know, we live in a small town. Everybody knows each other. I. I was able to get her on the phone that day. She was like, you know, it sounds like it. You know, you can come in, but it's gonna be at least a five month wait.
So we sat around and waited for five months and when we all came in, we all got diagnosed. So every family, uh, that has EDS, you have a 50 50 chance of passing that on your children. And I. Ended up like walking out of there with a whole big file folder of information for me, for my son, my daughter. Like, it was so overwhelming.
I was like, this is too much. Like I can't believe this is happening. Like we, our whole world got altered on that day. Oh my gosh. Thank you for sharing and for everyone. You're in the Midwest now from the east coast, right? Yes. So yeah, I'm, I mean, Midwest is best. So that's where the small town stuff happens.
I just have to put in that plug and yeah, feeling like a hypochondriac, feeling like a fool with a different brace that you're not sure of. And every day it's something different. It feel, I'm not necessarily religious either, but your story does feel like so many God winks in there, right? Like the Bible study and the woman and.
Your son blurting that out at the right time. Thank goodness our children to expose us for everything, right? So true. Um, this is so timely for me because, um, one of my daughters just had some testing the, the other day and I came home in tears, totally overwhelmed and wondering about myself and my other daughter as well.
I don't have all the answers yet, but. Tell me about like, how, how did you walk outta that appointment? A different person than when you walked in? You know, I think anyone who would tell you, anyone would tell you that when you get a diagnosis like that, it, there's relief. I'm not a hypochondriac, right?
Yeah. Um, there's an answer like to why all of these things have happened to me and. There is community on the other side. Mm-hmm. But it is also like, okay, great, because I'm a, you know, I'm a fixer. Let's get this wrapped up, right? Like, tell me what to do and I'll do all of those things and we will move on.
Right. This will be the end. And I think the shocking part about all of this was that it's like you have this thing. We don't really know anything to tell you. Like here's some like supplements that could be helpful. Uh, you could try these different things, but it was like all of a sudden it wasn't just that, it was kind of this.
Big file of information also included. Okay. That's just one part of the puzzle. Most people have many branches to their tree with EDS, so it's not a a quickly solved puzzle. It's like, okay, your child has a DHD, autism, scoliosis, Eller Sandler Syndrome. Uh. Mast cell disease pot syndrome. Okay, that's your tree right now.
Now we know all the, the branches you have, you know, all of these things. So it was like, okay, and you have to go and get diagnosises for all of the things. It's not just one thing. So it was like going down a, a tunnel that you could never come out of. Like, there's no time in the world where I can pursue all of these things.
And how am I supposed to be a mom? Run a business, uh, be present for my family, take care of myself, but now I'm freaked out because my children have it, which is a thousand times worse than finding out you have something, right? It's like, I can't fix this for you, and I feel sad that you have to go through this.
And it was just truly one of the most. Overwhelming experiences as a mother, uh, and, and disheartening, you know, that there wasn't more there. You know, they still haven't, for the particular type, there's lots of different kinds of EDS. I have the kind that is the one that doesn't have a genetic gene. So my children may hopefully have information at some point where they can make decisions about family planning.
Like, okay, do I have the gene that. Is for this particular type, but at this time, there's still no gene that has actually been isolated. That tells us like, okay, this is what has been going on. So all of this is kind of a trial by fire kind of experience because everything that I. And finding out and uncovering is like new for all of us, and I'm definitely more motivated.
And it became quite consuming because it's like if I can solve this, I could solve a lot of problems for my children and I would also solve a lot of things for myself. And I think the frustrating part is not getting so consumed by the research of getting a diagnosis and actually living a life that is adjacent to your diagnosis.
Oh, wow. Amy, I am hearing you and also being a perfect, like you're failing these tests. You wanna get a a on these tests and you failed. There's something wrong with you in some way, and then you've passed it on and that's all your fault, I'm guessing. Mm-hmm. That's how that kind of feels. Exactly. Being a person like you.
Mm-hmm. Also, me being a person like you is like mm-hmm. Wait, I'm perfect. I'm supposed to be perfect. I love to be perfect. I love to have everything right, and if there's a problem, we fix it and we move on. You've already shown that in the beginning of your story, right? Mm-hmm. Like, well, we'll just take care of this and then we'll carry on.
I. This is a different sort of lesson. This is a settling into a life in progress process, right? Mm-hmm. And I don't know what progress looks like. How does this EDS impact your daily life? Yeah. So if I told you all the ways I want to say that, if we don't have enough time, I, I, I don't want to scare anyone because I think, uh, everyone should know it is.
Just like any other diagnosis, maybe like autism has a spectrum. I do feel like EDS has a spectrum, right? There are people that have EDS and they're flexible and maybe they get injured a few times, but they pretty much live a full life. And I probably have some family members who have it that have never been, you know, formally diagnosed, but.
Lived a, a full life, never really dealing with it or having any major issues. And then there are other people who are bedbound, who are in wheelchairs, um, that have much, you know, harder, uh, time with their EDS than other people. I. And I actually, I've done pretty well until, uh, 2020. I got hit with COVI and long covid on top of having pot syndrome.
It just seemed to like really, really wreck everything that I had established. So no amount of my exercise and good nutrition and supplements and all the things that I had done could, uh. Cancel out what was happening in my body and I started, uh, to have a lot of issues, especially with my heart going crazy.
I ended up on the cardiac floor for a week, uh, as they tried to investigate what was going on. I just. Was having a lot of issues and since that time it has become very, very challenging for me. I think the biggest issue in my case, which may not be the case for everyone, is that I have a lot of bones that dislocate, so my bones don't stay where they're supposed to, and those.
Early injuries I was talking about are like minor compared to what I deal with now, which is, you know, I might go to PT and a shoulder bone has rolled down into my chest and uh, a collarbone could get dislodged in the wrong spot, or a rib will misplace itself and a lot of my time. On the weekends is spent at my physical therapist who create, created special hours just for me to come, which is very kind because it takes her hours to put my bones back in place.
It's very painful. Um, and really, uh, sad. It's very sad because, you know, it's not something I can do, uh, myself and, um, sorry. It's a very taxing experience to go through. And I don't know, every day when I wake up what I might deal with. And as a planner and a perfectionist, those are very frustrating aspects to my medical journey.
Um, and a lot of things were not told to me necessarily, or. Highlighted, which is something I would like to bring up is that, uh, menopause, it tends to like a lot of women going through that end up having more complications with EDS or that's when they discover it. If they've been anything like me, I was in full blown menopause and I did not know that I had even gone through perimenopause.
Uh, the doctor ended up running some tests and was like, you're actually. Halfway through the process of menopause. And I'm like, is there, like, what? Like I am, I'm a child. How was this possible? And he was like, some women go through it earlier. Uh, one thing I didn't know about the early menopause aspect and also how it dovetails with Eller Sandler syndrome is that, uh, I was also at risk of osteoporosis because I had went into those hormonal changes so early and then this year I found out.
That I am in like really bad stages of osteoporosis, like someone who's in their eighties and no one had ever explained I was at higher risk of that. And actually my children, uh, one of them has already been screened and in their twenties they're already in the osteopenia stage, which is something we will know for them and we will keep an eye out for, but is not something I had information to because we didn't know that that was something to worry about.
So it's a lot of like side. Hustles for EDS that I don't want to be on, but are becoming a part of my daily life. And you know, it is a rather progressive disease. And that's something that is frustrating as well because even I am, you know, I'm might have a good day now. I could have a harder time in years to come, you know, and that's a very difficult aspect of this because.
You know, especially with the menopause thing, blared on top, it's just a lot. Anyone going through hormonal changes can, can speak to just that alone is a lot, but having all of that happening is like a terrible storm, and I've had to kind of adapt to all of these different things that are happening. And you know, it's just, it's a lot.
And yeah, every day is a challenge. And yeah, I fight for every day. Mm wow. Physically, and you're in pain and there's these physical things happening, and then emotionally, how to accept yourself in this state and how to, the anxiety of what comes next and whatever today is, is very temporary because it's going to be different tomorrow.
We all have that, and you have that incredibly intensified. Of this, that's very hard. What helps your mental health? What help, what, how have you adjusted the way you approach yourself as you navigate through this? Yeah. I still feel like being busy is my best. Defense. Uh, and, you know, it's, it's for me learning to also allow room for rest because, you know, you, you have to reset.
And I was getting to that burnout stage with my work, you know, it was probably going to come to that conclusion. Ultimately, just the way that, you know, the world works with social media and, you know, aging out maybe of certain aspects of what I did, but I. I feel like. The reason why a bookish community is so great for me is that books are truly the escape that I have chosen.
That is the medicine, that is the remedy. That is the the thing that keeps me sane, and knowing that my resting time can also be. Putting together, oh, like I'm gonna ask this author if they wanna be on, and, you know, treating it still like work, but knowing that I'm honoring my body in the way that it needs to, has been a wonderful way to kind of honor where I'm at.
I take a lot of walks and my husband works remote and so we do a lot of walking and I feel like walking is really good for me, uh, to get outside a little bit and get out of my. You know, loop in my head sometimes. Mm-hmm. But, you know, I, I can't say that I do any of this perfectly in any regard, but I do the best I can to make the day as manageable as possible.
And, you know, maybe that's, I. Escaping with TV sometimes. I actually, my, my favorite thing is, you know, I have goals that I set for extracurricular activities because that's who I am. But I, I see 52 films a year, and I do a hundred books a year. And so my 52 film project, I require on the worst day of my health to go to the movies by myself and just soak in that experience, like get the biggest.
Buttery popcorn and you know, take that solo trip for myself and I treat it like a goal project. So, you know, our Paton subscribers get to enjoy all the, the rewards from all my leisure, but that is like my happiest place. It's where I can really keep my body at a. True rusting place in one of those recliners at the movie theater.
So I pick my worst day, like I, I'll be like, it's typically, I mean, not to, not to put any like goal on that, but it's usually on a Thursday, I've like hit my max. I'm like, okay. That's like the day that I'll go and like spend the morning at the movie theater. So I think it's just figuring out new ways and also changing your circle of people, you know, that was also very helpful to me.
Like people that could. Really show up for me at this stage, which this is not the fun version, right. It was really fun to be my friend when I was on the celebrity circuit or enjoying all the rewards or like going on shoots and shooting commercials and, you know, doing a book and having book tours. Yeah.
Put me on p please. Right, right. That was the life. That's, that's the friend I wanna be adjacent to. Right. I wanna be in that circle. But are you here? With this version of me and a lot of people left, uh, it was just too much because it felt like, like, is this gonna be your thing all the time? And I think this is a very good weeding out process of finding like legitimate people who love and care for you is when you're in the weeds like this, you know?
Yeah. Oh my gosh. How well I'm in for the long haul. Just so you know, I am here to lock arms with you, even if we're just laying down in the dark. Okay. From now until forever, you've got me. Um. Walking is medicine. I love that. Probably sharing with your husband or holding hands as you go around the block.
Um, breathing the fresh air, getting some sun in your eyes. I love that kind of medicine. Going to the movies in the middle of the afternoon and getting a big buttery popcorn is medicine. I love that. I personally love and almost prefer to go to movies alone, to be honest, because I don't have to worry about the person next to ME'S interaction and I don't have to share that popcorn.
So, um, I love that too. You're setting goals for yourself with your reading and your movie watching. That's. So type A, uh, like these are my recreational goals, these are my relaxing goals. And also your body is telling you in some ways probably what we all need. I just read something today that said like two to three hours hard work every day.
Like go at it, like go to the gym and do that workout or invest in your work and do that deep work that you need to do, and the rest of the time. Go slow and relax. Don't waste your time in that anxious middle. And I'm like, I spend so much time in that anxious middle, not getting something done, but also not completely relaxing.
Right. So when you're on and you feel it, you can go. And then most of the time, 70 plus percent of the time can be rest and slow time. But you also have what I call your unicorn space just because, um, Eve Rodsky of Fair Play and the book Find Your Unicorn Space, and I've just done two workshops on this.
It's top of mind. That's creative pursuit of purpose. Even in the midst of pain, even in the midst of depression and grief and change. Your work is also a bit your unicorn space and you've created and carved out and prioritized that. So that's, those are really beautiful lessons and I can't help but wonder, I'm gonna segue because your health journey sounds a lot like my sober journey and I have to say like, okay, so you found reading a books.
But did you try alcohol? That's also quite an effective escape. Yes. Yes. I did try alcohol. Yes. Let that go for you. Well, it wasn't my best banner years, although I would say that was a fun Amy to hang out with for a little bit. Not the messy part, but the, the, the good part. The times. Tell me your journey with alcohol.
I'm curious how this plays in especially with, um, EDS. Yeah, I grew up in a religious home that alcohol was a forbidden kind of thing, and so I had no interest in ever pursuing that 'cause that was just not part of my religious upbringing. I was definitely a wild child, child when I went to college and you know, I did drink in college and I would say that.
I was also a mom that was raising kids during the mommy wine culture, which I think we're all quite acquainted with at this point. But I remember it being such a big part of my identity, like, I deserve this. I've earned this. You know, everything that I had went through and I. Was using that as a crutch a lot.
And my social circle also was all doing it. So I didn't feel at any point that I was like the outlier in any kind of scenario. This was what we did as like a free, you know, free time activity. I had a mom's group and in that group we had outings Every week we would do different kinds of things, book club, whatever that was, and we would always have.
Drinking as part of the activities. I would say I was always the one that went too far with the drinking and I can see that now. Like other people would be fine with just a few and I would be like, why? Like, stop. We're having so much fun. But I think the one thing that I started to realize was as my health got worse, uh, and I was telling everyone, oh, I'm doing everything I can to be better.
Hmm, I was still drinking and I will say that uh, there is a lot, a lot of stigmatism around pain medication, treating pain in this country because of the opioid epidemic, and I was denied. Any kind of pain management care. I would go to doctor. To doctor to doctor to get my pain treated and no one would help me.
I remember, you know, just to highlight, once again, my bones are rolling out of place. If you have ever had one single dislocation, you will remember it. But imagine you're doing that. Four or five times a day, your bones are just not staying where they're supposed to. And I would be just bawling my eyes out in miserable pain.
For an example, I went to see a practitioner to get help and they had me waiting for months and months to see this guy, and I was so excited I could hardly sleep the night before. I was like, this guy's gonna help me. He's gonna make my life better. And. I went there and I explained what was going on with me, and I could tell right away that this was not the vibe, like he was not gonna help me at all.
And he said, you know what your new pain management strategy is? It's take two Aleve and put your feet up. And he walked out and I remember meeting eyes with the nurse and just being like, shell-shocked. I went out to the car and I was bawling my eyes out. At this point, I have seen tons and tons of pain management specialists, doctors, no one would give any any care to me regarding pain.
They would just tell me, you know, take Advil, do the best you can. It's not proven to help. And so I used alcohol as a crutch because no one was helping me. Get out of this and it would get to the end of the day and it's like, I, I can't take it anymore. Like I literally cannot take this pain. Um, and so I used that and I was trying so hard, you know, I did a program called Curable.
I. Which is an app for people who are, uh, really trying to kind of rewire your brain into not thinking about the pain so much. And there were a lot of people in the, in the group people, a lot of people with migraines and things like that. It's actually designed for people with migraines. And I joined the bootcamp program to try to.
You know, kind of maybe if I can get my brain re rewired, I won't need this wine so much. You know, I won't need these crutches in my life. But, uh, I did the program and I remember toasting myself. I even have a picture of it, which is kind of horrifying now that I think about it. But being like, I got through that program and like life will be better, and that was just right before.
2020 when I ended up in the hospital. Mm-hmm. And so I was still continuing to use it as a crutch for my pain and I was just not proud of myself with how I was doing that, because I knew it wasn't to. Relax to unwind. It was a vicious cycle, and I would wake up with the worst anxiety ever in the whole history of the world.
My heart would be racing, you know, it would like start me off at the races, like I already have heart problems now I'm like, I. Doing wine to unwind at night, waking up off to the races ashamed of myself, uh, you know, just drinking way more than I needed to in the evenings. So I started out with just a app, I think it was called, well I think it's called Sunnyside now, but it was an app to reduce the amount of drinks that you were having.
And I like programmed in, you know, something like, oh, I'd like to be down to, let's say 15 drinks a week. Uh, which sounds crazy now, but I was just, I was consuming a lot. Right? Uh, and that was like a very ambitious goal. Great conservative, right? Like, okay, you know, because every night I'd be like, oh, two would slide into three, like just finish the bottle of wine that we split, right?
Yeah. So I just didn't. I really wanted to do better and I remember setting it and I did talk to my kid about it and he was very surprised. I think no one knew, and it wasn't like I was doing anything necessarily that was shameful or that I felt, you know. That everyone was noticing or any of that, it was just this like private internal struggle that I was dealing with every single night knowing I have pain and I need.
My pain to stop. And I will say that anybody who hears my story is like, well God, I'd be drinking like I drink all the time and people would just egg me on. 'cause they're like, you go through so much every single day. If my bones are rolling out, I totally drink. You know who wouldn't deserve, right? You deserve it.
You earned it. You made it through your whole day like that. Like that's so impressive. Um, and so I just felt like I deserved it. And then I ended up getting a practitioner who was willing to treat my pain. And it's like, okay, now I'm getting my pain treated in a way that really makes sense, that helps me live the best life that I can.
I have no excuses to be doing the shenanigans all the time, like there's no reason. So I started using the app and gradually just, you know, decreasing a little bit by little bit by little bit. And it's been, I think roughly three years since my last drink. And that's. A decision that I made and then I remember that I didn't know really how to talk about it because it wasn't anything dramatic.
I didn't feel. Like, I had like a lot of labels to it and I didn't wanna attach a label to it. Like, I'm like, am I sober now? Like, what does that mean? Like, do people, if I say I'm sober, will people think I was an alcoholic? Was I an alcoholic? Like what does that even mean? And all of these labels I was really getting hung up on.
But at the end of the day, what I know to be true is that it was a not a helpful. Thing in my life, my anxiety was through the roof. The hormonal change changes were happening at the same, same time. They were making everything this horrible storm. I did not feel good when I was doing it, and I knew that I could be better.
You know, I knew that that was my one thing that was holding me back from a lot of stuff. And that's when I started my podcast because I was like, what am I gonna do in the evenings? If I'm not drinking. And I do think that's like the thing, it's like all this downtime. And that's when I would be like, oh, I just need a glass of wine.
I need that glass of wine. And so I was like, what if I'm on YouTube teaching myself how to podcast? You know, I'd watch all these like YouTube bros teach me how to do different skills and be like. You know what? I'll listen to you like only in this warmup, but I will listen to you. Right? Okay. Yeah. And I started to like kind of get that confidence that, you know, maybe this is what I do.
And so I would drink tea in the evenings, watch, you know, these things on how to podcast, try to build a podcast. You know, I didn't know what I was doing, but I knew that it kept my brain busy so that I was not grabbing a glass of wine. It was truly like. I became obsessed, you know, because I needed an obsession to get out of that obsession, which was every night like unwind with wine.
And what was interesting about it is that I never pushed it on anyone in our house, but my husband and I, we seem to fuel each other a little bit because it's like, oh, well I would have a glass. You would have a glass. I have a glass. You have a glass. His wine consumption with Dr. Almost zero. You know, because he was just like, it's not very fun to do by myself.
You know? And noticing that I was making changes without putting pressure on anyone around me, you know, that initiated a lot of change for other people. And so I started to talk a little bit about it. Uh, we hosted, uh, someone on the podcast, and I just said like, there was nothing dramatic. It doesn't have to be dramatic, I just have anxiety and it wasn't good for my anxiety.
Mm-hmm. And other people started messaging me and saying. Thank you for saying it like that. I have anxiety and I now realize I've been doing that to myself too, and so it wasn't anything grand or big, and maybe that's kind of the reframing that more people need to hear. It doesn't have to be dramatic, right?
It doesn't have to be this like horrible thing where everybody witnesses, it's just like, you know, it was this quiet thing. I had a lot of discomfort about it, but oh, for me, a big component of it was just. Will you please treat my pain? So I'm not using this as a crutch. Uh, and once my pain was treated, I didn't find myself needing that.
Either. Mm-hmm. I love that. Oh my gosh, I so relatable. Thank you so much for sharing that. It is my mission to make it safe to, to evaluate and question your relationship with alcohol without giving yourself a label or deciding you wanna quit forever. Nobody starts that way. Right. Yeah, that sounds terrifying.
Me included. So, um, and we think, yeah, like you have to qualify to quit. You have to have a lawyer or a policeman or a doctor involved or a husband walking out the door or something in order to address it. But it's okay to just evaluate it and you don't have to say, I'm never drinking again, just to take a break and see.
But what I hear so many similarities, it's like my, I had pain too. My drinking escalated for self-medication also, but it was for grief. Yours was for this physical pain that you couldn't figure out. And mine was self-medicating for this grief. And now I know how to address grief. Right. And I know that it, I let it live alongside me.
And I bet you do too, because you have grief of who you used to be or the things you used to be able to do that you can't tell and the people you've lost along the way. And that story is so true too, because sobriety, like chronic pain, maybe. Um, attract some propels people to your life, and I bet you have a new circle of folks that understand and you've got some new, a new community specific to that as well as I do too, even though I was resistive to it for far too long, right?
Mm-hmm. Because I don't need anybody on any help, all that thing. And then also you're, without realizing it, you're a sober influencer, one to your husband. I tease, I we have the same story. I quit drinking and he lost 20 pounds. I'm like, really? I was the one that had a problem with that. I lost zero pounds.
You. But I was the drinker, so, um, I mean, he, he drinks very little now, so it's actually good and healthy for everyone. But since I was young, I had this thing of like. What to do in the evenings? I guess I always felt restless and unsettled and like, um, speaking of my grandma who I just lost, if I was there like on a Sunday night and it started to get late and dark, that it was gonna be almost time to shut the shades and like the tick, tick, tick of 60 minutes would come on, I would get this like very homesick feeling of like, it's Sunday night and I'm here too late.
Mm-hmm. And. I wanna go home, you know, or whatever home is. And now even like doing a sunset walk that time of day, like. Dusk and like you can see in people's houses, right? Like their lights are on, but their windows, their shades aren't shut yet. And you're like, what are they doing? What do people do in the evenings?
Because I too am so restless, I'm such a busy body, I don't really know how to relax. I don't watch a lot of tv. Although I'm practicing, trying to binge watch like that is actually a goal for me. I get it. You like, I have to put that, I'm like, like. I am going to succeed at finishing an entire series this weekend.
I'm gonna sit still, I'm gonna really try to sit still, right? And so, um, I used to drink, drink, drink, and then do my little blo family blog spot. And then I would just know that I couldn't publish it drunk. I'd have to like look at it in the morning and make sure I didn't overly say anything that I shouldn't have said or whatever.
And now of course I have an entire business I can throw myself in and books I can throw myself in and a lot more hobbies. But, um, that evening, restless time, I think that is a lot of reason why we drink, because it slows our brain, it slows our thinking, and that kind of softens the edges. So. Alcohol serves a purpose, you know, and so we go to it and it's effective and it kind of works before it doesn't.
And then we have to recognize that, like, that anxiety in the morning, that heart pounding feeling, that shame, um, that's all included in that experience. So the return on investment is typically not good, but it's a little bit fool's gold because it's pretty fast and effective in the beginning. Yeah, for sure.
Yeah. So now, um, we've got some pain management. You've got podcasting that you can do in the evenings. Um, what is ahead for you? How has it changed from your initial diagnosis to kind of how you've navigated now living with it and teaching your children and changing your social circle? Uh, where are you at today with this?
You know, I have had a rough past year, so I had a lot of setbacks this year. The osteoporosis thing really. Threw me for a loop, uh, with my care. And, you know, that's, that's the frustrating part because I did feel really good about where I was at, and then kind of got thrown back into the fires again. And I think the difference now is that I have better coping strategies than I did the first time I got thrown in the fire.
Like I'm not. Looking for wine in the evenings or anything like that. I know you know that I can get through this, but I think the hard part has been witnessing. My children are now. Starting to have those kinds of issues that I have, you know, and so being present for them while also caring for yourself is, is hard.
And you know, it is a, it's a balance and I'm just so glad that my kids have answers and that they have a mom who like made it her like thesis to like try to solve the riddle on this. The things that I know that are in my head, like. I became like the go-to guru if you couldn't, you know, get in with a doctor, like people would reach out and be like, oh, you should talk to her.
'cause she has figured out a lot of different things and I'm really grateful that I have that kind of brain that I want to be a sponge and, and try to solve it as best as I can. So that has been very helpful for, you know, this stage. But you know, every day is. Unexpected. Like nothing ever works out.
Exactly. I don't know. And I think I'm leaning more into being a last minute. Planner and leaning into being more spontaneous with the people in my life. Like not telling them if I'm going to like show up for something or, you know, just be that person that's this unexpected surprise and not feeling like I'm letting people down all the time and just kind of letting my body dictate.
What I need to do and being okay to be left out sometimes, uh, is, is a hard thing. But knowing that I'm honoring where my body's at now is really important to me and making space for the things that matter the most to me. You know, what do I want to achieve versus. You know, always pushing myself the way that I did before.
I, I'm much kinder to my body in those ways. Holding true to bedtimes, holding true to, you know, unwinding the way that I know that I need to, and. Just being present for myself in a way that I was not before. Like, and it's hard. It, it, it takes a little bit of discipline that I don't feel like I have discipline in those regards.
And so I, maybe it's an age thing and leaning into like, I'm okay, like sitting on my recliner and enjoying these hours that I get to have at the end of the day instead of pushing, pushing, pushing all the time. Uh, and it means stepping down from a lot of things like. You know, being the surprise volunteer instead of being the person who volunteers all the time, like, oh, there's something going on.
Today is a good day. I'll show up. Or saying, no, today is the movie day that I planned, you know, to allow myself to have once a week. So it's being a little bit more fluid about my routines. That's something that has been difficult as a type A person. I love it. So many silver linings. Wow. One, be your own advocate.
You've had to really like raise your own awareness, be your own advocate for yourself, and also fueled for your future, for your kids and the other generations coming up. That's beautiful, spontaneous spontaneity. That is so. Awesome for a planner that you are forced to, um, be a surprise. Let it be a surprise and kinda lean into that.
I love that. And mostly I think all of life personally is a journey back to yourself, a journey back to listen to yourself and what, what your relationship with yourself is. And it sounds like. A lot more acceptance, being a lot more gentle, less of a drill sergeant, and finding worth not only in performance and production and all these things that you're used to, but in being soft and letting yourself be is the, is the best way.
That's, those are, those are beautiful life lessons for everyone. What do you want our listeners to know? How can we support you? Your journey, your advocacy work? Um, any final thoughts you wanna leave us with? Yeah. I would love if you are a reader, to join me over on my podcast, I run the booking podcast, which celebrates.
Debuts Backless books and under the Radar book Gems and our Patreon community is where it's at. We run a book club and we have all the books announced. So I'll give a link to Heather to, if you think you might wanna join a book club. Uh, we have all 12 picks that are out and we will be meeting with the authors to talk about their books.
And that's where we also do our fully booked show, which is where we. Share what we're loving and loathing every month and also all the book adaptation news and all the fun stuff like that. But we also have a lot of fun things, like I do a playlist for every month of music, so some people just join for the playlist 'cause I have a music background.
So I really enjoy putting that together and I just have so much fun over in there. I get to be like fully creative. It's kind of my own little Etsy shop for our patrons and I, I. Really, really encourage you to, uh, be part of the community. I love it so much. Thank you for your time today. I'll have everything of course, in the show notes so everyone can connect with you.
I appreciate you so much, Amy. Thank you, Heather. I.
