Episode 36: Tonya Butts

Tonya Butts is the founder of Sweet Apricity, a sweets company that makes elimination-diet-compliant caramels (and caramel sauce!), marshmallows, and more. The company started on a whim: Tonya began crafting her dairy-free caramels as a graduation gift for her best friend Wendy, who manages debilitating symptoms with the Autoimmune Protocol (AIP). While offering powerful relief for those with autoimmune disease, AIP also eliminates a number of ingredients that limit indulgence (read: sweet!) options. Tonya knew what most of us who have tried a strict diet understand: sometimes the greatest gift is a sweet treat that won’t wreck our progress. Sweet Apricity’s Caramels, Marshmallows, and Caramel Sauce offer a sweet reward for all the work it takes to heal. They are grain-free, dairy-free, and refined sugar-free, made only with simple ingredients allowed on the AIP and Paleo diets. Still locally crafted by hand in Portland, Oregon, Sweet Apricity remains true to its roots with real ingredients, small batch production, and a growing line of artisan offerings. From the beginning, the mission of Sweet Apricity has been to offer a treat made with ingredients our bodies will love. In the course of start-up and as the company has grown, Tonya has discovered a shocking truth: that she’s been living with toxic mold symptoms for years. In her “coming out”, she tells Lauren about transitioning from “well” to “sick”, how this has affected her identity and her work-life balance, and how grateful she is to be connected to the caring community of Spoonies (and their loved ones) that Sweet Apricity has brought into her life.

Key links mentioned in this episode:

Sweet Apricity

Dr. Dietrich Klinghardt

Autonomic Response Testing – ART

Radical Metabolism by Ann Louise Gittelman, PhD, CNS

Bulletproof

Fleabag

Wallaby – Organic Dairy Products (Sour Cream currently discontinued)

Simple Mills Crunchy Chocolate Chip Cookies

Hu Kitchen Chocolate (also Lauren’s favorite!)

Join us as Tonya shares…

  • that when she first brought the caramels to her friend Wendy, Wendy’s response was one of total shock and joy – she screamed with delight and immediately began to sob with relief
  • the meaning behind Sweet Apricity’s name
  • why Tonya does what she does: that she wants to serve “a feeling that is elusive to people following a restrictive diet”
  • that while her friend’s restrictive diet was never a roadblock in their friendship, Tonya became very protective of Wendy’s health and of others’ judgment
  • that she lives with PCOS and has had her gallbladder removed
  • that she experienced a lack of follow-up care with regard to both her gallbladder removal and the use of birth control for her PCOS
  • that she unknowingly moved into a moldy house in the PNW, where she lived for 5 years
  • that it’s not necessarily realistic to remove oneself immediately from a moldy home – because of the cost of living and the remediation process
  • that she went on AIP for 14 months to experience what life was like for Wendy – but also because of its healing properties
  • that she gained weight because of her mold experience
  • that she couldn’t even begin to treat her mold toxicity until she left her old home
  • that she is treating her toxic mold infections with a functional medicine doctor – whom she travels to Seattle to visit
  • that the doctors she sees in Seattle are two of the first to have been trained by Dr. Klinghardt (known for work in Lyme), and utilize ART (autonomic response therapy) to treat her mold toxicity
  • that she also struggles with heavy metal toxicity
  • that she’s been very good at hiding her symptoms
  • that in order to balance work and life, she’s surrounded by colleagues who know her well and want to see her succeed – so she’s able to create accommodations for her chronic illness
  • the irony that someone can spend exorbitant amounts of money for a meal that isn’t safe for them – and the realization that often, eating out/eating while traveling will make her feel unsafe in her body
  • that she has experimented with veganism, paleo, keto, and intermittent fasting over the years
  • that diet change is rarely easy – and the key to success is mindset
  • that she’s an emotional eater – and that’s OK
  • that chronic illness can lend itself to a disordered relationship to food and eating
  • that her biggest struggle right now is with cognitive function – between mold, heavy metal toxicity, and hormone dysfunction
  • that she recently stumbled upon the book Radical Metabolism, which she has found to be very useful
  • that she gets ghost migraines – which affect her vision – when she experiences inflammation
  • that she makes a conscious effort to hide her impairments – and she realizes she is often not having the kindest internal dialogue with herself
  • that she questions – and sometimes doubts the existence of – her chronic illnesses, because they’re invisible, and she is sometimes able to hide them
  • how often Wendy was dismissed by doctors, who tried to tell her the symptoms were all in her head
  • that dairy wreaks havoc on her mental health – so she has to be very careful when she consumes it
  • that she’s been able to reintroduce corn, but she’s unable to consume tapioca
  • one of her favorite indulgences: ‘smores made with her marshmallows and caramels

embr wave

This episode is also sponsored by Embr Labs, creators of the Embr Wave.

This August, get $50 off your personal thermostat device with code INVISIBLE50 at checkout!

Every purchase you make with the above codes supports Uninvisible’s ongoing mission.

Tonya Butts Sweet Apricity Uninvisible Pod

Lauren: Okay, thank you so much for joining us today. I’m here with Tonya Butts, who is the founder of Sweet Apricity, which is a company that I’ve recently featured on social media … if you guys haven’t had a look, they make sweets like caramels and marshmallows that are AIP, Paleo, gluten-free, dairy-free … compliant … for a lot of us in this invisible and chronic illness world. So Tonya, thanks so much for joining us!

Tonya:  Hi, Lauren. Thank you so much for having me.

Lauren: It’s an absolute pleasure. So I wanted to start by talking about your company. You founded Sweet Apricity because a friend of yours has dietary concerns, right?

Tonya: Yes, my best friend had numerous autoimmune diseases.

She had been diagnosed with late stage Lyme disease. And so she had been following a strict AIP diet for over four years. And she was graduating magna cum laude from an honors program. And she did that while experiencing an average of 22 migraines a month. She had accomplished this herculean achievement. So I wanted to do something to celebrate this monumental event in her life …

… and like I said, she hadn’t had a treat because, as many of your listeners know, Autoimmune Protocol means no nuts, no eggs, no chocolate, no coffee, no vanilla. So if you’re Paleo, you can find a cookie recipe or treat recipe on any corner of the Internet. If the Internet has corners … !

Lauren: That’s true. It’s probably very round!

Tonya: Yes, probably! (laughs) So she hadn’t had a treat for four years, aside from being able to put honey into her tea. And so for the holidays, I had worked on making a Paleo-friendly caramel turtle, a caramel pecan turtle-like thing. I realized that if I removed the nuts and the chocolate that she could eat the caramel, so I made them and took them to her graduation party. She put one in her mouth. And she screamed. And then she started sobbing.

Lauren: Awww.

Tonya:  Yeah, it was this really unexpected moment —

Because in that moment, I realized what life is like without an indulgence.

It was just this lovely, shocking reaction that she had.

Lauren: So your friend had this treat and had this amazing reaction. Did you suddenly get the idea that this was your future?

Tonya: Oh, no, no, no, no! I forgot that part of the story. She is infinitely smarter than me. And she said, “You should sell these.” And I was, like, “Okay.” So I did, and yeah, that’s how we’re here.

Lauren: That’s how Sweet Apricity was born!

Tonya: Yeah – three and a half years later.

Lauren: Tell us about the name too, because I love the origin of the name.

Tonya: So I’m a word geek. I like words. I like the way they fill the mouth. I like the concept that they can kind of encapsulate …

Lauren: You’re speaking to a former actor, so I know all about that kind of language!

Tonya: Oh, nice!  So I came across the word … it was kind of making a resurgence on the Internet, or they were presenting old words that had been retired or died out. And I came across “apricity” and the meaning. It’s a word from the 1600s. It means “the warmth of the sun in winter.”

And it’s like I got punched in the gut. The word and the meaning … it took my breath away. It was exactly what my friend had experienced, being able to have a treat for the first time in four years.

So, it’s an impossible name. And I apologize to everybody who can’t remember it or pronounce it. I apologize to everyone who tries to spell it and spell check!

Lauren: (laughs) All that said, though, it’s a really meaningful name. And obviously, there’s so much heart behind this project for you, behind your business — because you really created it for your best friend. Which is gorgeous. 

Tonya: Thank you. Yeah. As it grows, I have to come back to what was my intention around doing it.

I do what I do because I want to be of service to a feeling that is elusive, to people following a restrictive diet. That’s my primary objective, to be of service to that feeling.

Lauren: I really like that. I really appreciate that. Because I’m eatin’ those caramels and marshmallows! Let me tell you! So, how did your best friend’s illness affect your relationship? Did you find it to be a roadblock when you would be going out and being social with her, or would she always be normalizing it when you were around each other?

Tonya: Honestly, it was such a non-issue. I had been raw vegan for two years, and then gone from raw vegan to Paleo. 

Lauren: That’s a big leap.

Tonya: Well, I’m a cattleman’s daughter to begin with. So giving up meat was more difficult than reintroducing it. I was living off the grid in the mountains of New Mexico; we were growing our own food and it was easier. It was interesting to experience what that life was like … it was really hard. I think one of the casualties of being raw vegan is that I don’t like avocados anymore. 

Lauren: Because you ate them all the time.

Tonya: And I love them. So I’m really sad about that. But it really was a non-issue. Because by the time I was Paleo, there weren’t a lot of places to go and eat. There was one Paleo cart here in Portland, and they eventually opened up a brick-and-mortar. So those were the only places we would go. They also serviced the AIP community as well. So we could go out and have that experience of dining out. But for the most part, we just cooked for ourselves. Or we’d have dinner parties and spend time together while cooking for ourselves — which I’ve kind of done for years, just because it’s safer. And it’s usually cheaper, and you can eat really well and not worry about whatever you are worried about.

Lauren: Yeah, and the nice thing about cooking together at home is that you get to pour the glasses of wine and just really enjoy each other’s company. And also celebrate a meal that you’ve made, which is really nice. So, it never felt like a sacrifice is what we’re getting to, making these adjustments for your friend?

Tonya: I feel like the one thing that I did notice that would happen, is that I felt really protective of her. Because people would look at her and be, like, “You just accomplished this thing, in an honors program; you just finished your thesis. And you don’t look sick.” And I would be, like, “I watched the process of her trying to finish these tasks, and they weren’t easy.”

And so I would feel really protective of people who would want to call her out on not being sick.

And be, like, “Yeah, I’m behind-the-scenes. I know what that looks like.” I would watch her; she’s been my best friend for almost 20 years. And so I also had all this information going back, where I could see how it was affecting her, cognitively, especially. That was the biggest thing that she …

Lauren: She just couldn’t get through everything, yeah.

Tonya: She couldn’t recall words. And she’s one of the smartest people I know, on paper and off. And so to watch her struggle — because I’d watched her process for so many years — to see this change. It was really easy to not be, like, ‘Oh, this is an inconvenience.’ It was, ‘This is something that’s going on with my friend.’

Lauren: And obviously your support did turn into a larger scale of advocacy — aside from defending her to naysayers, you also started this company really because of her and with her encouragement. Which is really beautiful. So, one of the things that came up when you and I first chatted, which was a few weeks ago, was that you have now gone from being well and having friends who are ill, to also being in this invisible chronic illness world. I’d love for you to share with us a little bit about what’s been going on with you, and how your experience knowing your friend and caring for her has informed your recent realizations?

Tonya: That’s a great question. I don’t know if I know how to answer it.

Lauren: Well, I know one of the things you did talk about was the inner conflict of admission when it comes to this particular illness — not only to yourself, but to other people. As a female founder of a health-driven company. And how that might affect people’s perception of you. But I was, like, You’re so brave. And you get to eat your own products, which is great. You can say: “I get to eat them!” Tell us what you’ve got going on, and and how you found out.

Tonya: I was diagnosed with polycystic ovarian syndrome (PCOS) when I was 18. And they wanted to put me on the Pill — which is fine, they did. 

Lauren: For better or for worse!

Tonya: I didn’t stay on it long, just because I didn’t like the way it made my body feel. I think I might have been on it for about a year, and then I stopped. And I kind of forgot about it.

And then I had gallbladder disease; I had 48 hours from the first attack to when I was actually on the operating table. I think back to that, and I still get really frustrated, because there wasn’t any conversation about … just stop eating these things.

I don’t want to say how many years ago that was, but it was about 20 years ago. And I was the healthiest I’ve ever been in my life. I was training to be a kickboxing instructor; I was kickboxing five times a week, I was going to school, I was working 80 hours a week. It was really busy, but I was really active. So that this happened was really shocking. And then afterwards, there was no follow-up care. They just said, don’t eat fatty foods. But that was the point in time … even with the the PCOS stuff, I think it was well managed with exercise and activity … there was no communication about, like, this is the best way to eat. And if there was, it was: Eat more grains, and less fat. But I remember noticing after the gallbladder surgery … that’s when I started gaining weight, an average of five pounds a year. So it wasn’t a lot at first. But also it took me down for 18 months … they said, you can’t kickbox, you can’t do any fighting sports for 18 months … because it had been pretty invasive surgery. But I did notice that weight gain began, around five pounds per year. And when I returned to the Pacific Northwest, I ended up moving into a place that had mold. For five years.

Lauren: Which is a huge amount of time.

Tonya: Yeah. And when we realized it, I was still stuck in this place. Mold is such a hard thing. First of all, it runs rampant in the Pacific Northwest.

I know that when people are talking about mold, it’s: Get out as soon as possible. But that’s not necessarily realistic. I couldn’t afford to pay to break my lease. It wasn’t my space, so I couldn’t remediate it properly. They didn’t care because they couldn’t see it. But above and below, there had been all this water damage that I learned later hadn’t been properly remediated. And the last year I was there, I started developing migraines four times a week. I’d never had migraines before. 

Lauren: So suddenly you were living like your friend had lived.

Tonya: Yeah. Exactly. But I’d been prepared, after watching her do it. I had gone from Paleo; I’d done AIP for 14 months, incredibly strict. Because I wanted to see what life was like for her. Paleo felt so indulgent after AIP for a year-and-a-half.

Lauren: Yeah, suddenly doing dairy again!

Tonya: Right? I was able to reintroduce butter. I was, like, I’m never eating coconut again! Coconut oil anyway.

Lauren: Luckily, there is … there is coconut palm sugar in your products. 

Tonya: Yes, and there’s coconut oil in there as well. 

Lauren: That’s how you get around it. And coconut cream, and things like that, yeah.

Tonya: I think it was a matter of, I don’t have to cook my meats in coconut oil anymore. Which was really lovely. So, I ended up gaining a lot of weight with the mold. At first, we couldn’t figure out why. And I finally found a functional doctor who was able to dial that in. But we couldn’t even start treating it until I got out of the place I was in. So, for the last six months now I have this new place. I’m the first one to ever live in it. So I’m hoping to get three clean years of no mold. But again, it’s the Pacific Northwest. 

Lauren: It is rainy. And wet and cold over there a lot. So it’s known to happen. So, I know that you had mentioned that you found a functional medicine doctor you’re working with. What steps are you taking specifically to control your health? Because I know that you were traveling to see some of the doctors that you’re working with. How does that look? What treatments are you using?

Tonya: I travel to Seattle about every two-and-a-half, three weeks to visit my functional doctor up there. They use a technique called Autonomic Response Testing, ART. The clinic that I’m seeing … two of the doctors were the first team to be trained by Dr. Klinghardt.

Lauren: For those people in the Lyme community, you’ll be familiar with that name.

Tonya: What they’ve been doing has been amazing. They’ll end up testing all the systems in my body, and what comes up first is what we end up treating first. So if it’s hormones, or if it’s mold, or if it’s bugs, or if it’s heavy metals (which is a big one for me right now). Now I live in this brand new, beautiful place that has no mold … but we’re looking at eight years of burnoff of formaldehyde. So really, unless I’m living in a tent … !

Lauren: You’re gonna have exposure to chemicals in different ways. 

Tonya: Right. So she’s just helping me put together a plan as to how to best mediate that. The other thing that’s really useful with ART is that it’ll show which systems are the most taxed, that needs the most attention first. It doesn’t mean that the mold isn’t still there. But right now, it’s heavy toxins that are up. So right now, we’re treating the heavy toxins and then in three to six weeks that can shift, and then the toxins are still there but mold is the one that will be up.

Lauren: Yeah, the main one that you’re really taking care of. Interestingly, I noticed when we started the interview that you’ve got a little infrared sauna behind you. You have that, and you have an ice bath at home. So you’re using a lot of these detox practices that we do hear about a lot, and in relation to Lyme as well as to mold toxicity concerns. There is that overlap with, I’m sure what your friend was experiencing, at least in your symptoms, right? You’ve described the migraines. So it’s almost like you’ve sort of joined her in that journey.

Tonya: Very much so!

Lauren: So did you ever discover at any point along this journey to getting your diagnosis of mold toxicity and going for treatment, especially going all the way to Seattle, that you needed a personal advocate at any point — like someone to come to your appointments with you, or to defend you to other people who would not understand what was going on?

Tonya: No, I think I’m better at hiding it, to be honest. I don’t have a lot of people in the company anymore. It’s just me and my chief operations officer, who is another best friend of mine for 19 years. So he also knows how to manage me and I also warn them; I’m just, like, “Hey listen, I’m not thinking well today. You’re going to tell me this, I’m gonna forget.” I guess in that sense …

I’m surrounded by people who love me and love the product, and really want to see the company succeed. Because they know me so well, they know how to help put systems in place to keep me going. There are weeks where I can’t get out of bed for three days.

A big thing that I always forget about …

Lauren: … is the brain fog!

Tonya: Yeah. When traveling, it’s the oils. If I find a nice steakhouse and just get a giant steak, or just get a steak and some broccoli, I’m gonna be fine. And then I’m, like, ‘Well, I forget that they’re probably using that whipped butter …’  If I’m willing to pay $100 just to sit down and have a meal, it should be safe. And that’s never the case. I end up somehow inflaming myself. So I don’t spend $100 on meals! When I’m traveling, I can use it as a fast day, which has been tremendously helpful as far as metabolism increase and digestion go, and hormones. 

Lauren:  Okay, so you’ve been doing intermittent fasting? 

Tonya: Yes. 

Lauren: Interesting, because I hear about it from time to time, and people have come to me and said that their doctors have suggested it. But I’ve never had anyone suggest it to me. So I don’t know enough about it to speak to it. But it’s interesting, because a lot of people are starting to get into that. And I’m finding people who are having hormonal and environmental issues, just like you, are the kind of people who are having the most success with that kind of lifestyle and diet change. 

Tonya: Yep, I am loving it. But I’ve also practiced fasting for decades. 

Lauren: So it was pretty easy for you to transition. 

Tonya: Easy? I mean, it’s never easy! (laughs) That’s not entirely true. It’s the mindset. Because you’re giving up food. Especially as an emotional eater. So there we go; it’s all out there now. I’m totally an emotional eater. 

Lauren: So am I; I’m with you. I think a lot of us are. And when you go through something with chronic illness as well, or if you have a loved one who does, I think that you become even more of an emotional eater. Because even if you know that certain things are going to affect you, you kind of say, ‘Well, here is where I’m making my exceptions.’ Or, ‘Here’s where I really need to have the thing that I need.’ So we cling to those structures more as well, because they’re the things that make us feel well. 

Tonya: Especially when you look at pleasure principles — our sex drive, or our desire for food, or safety, or all of those things.

Having an autoimmune disease makes the world feel really unsafe. And dining with friends is something you no longer really get to do without being this inconvenience. And then the sex part, if you’re in pain all the time, that doesn’t always feel like a comfort; it can sometimes feel like an obligation. The only thing you get to kind of feed that pleasure zone is eating, and you have to do it alone most of the time. 

Lauren: Which has its own emotional consequences as well.

Tonya: Right. It’s kind of this pointed sense of being alone in this process again. It was kind of the whole point of having this product. Not to tie my product to the joys of sex! (laughs) But maybe a little! (laughs)

Lauren: Well, there is some science behind sugar and sex! (laughs)

Tonya: Right? There we go. Increase of dopamine or serotonin levels.

Lauren: No, absolutely. 

Tonya: So yeah, it’s being able to find something — especially when we’re alone, or just around food in general. We’re always thinking … how do we meal prep? How do we cook enough foods that we have safe food to eat throughout the week — and we don’t get so hungry, that we grab something that’s a bad choice, that’s going to have lasting consequences?

Lauren: Well, you go from not having to think about it to having to think about it all the time.

Tonya:  All the time. 

Lauren: It’s almost like it creates its own disordered way of thinking in the sense that you have to be always planning ahead and always thinking about food. Which people who don’t necessarily have these conditions … they don’t have to think that way. They can just eat when they’re hungry. It’s not that simple for those of us in the autoimmune world, or the invisible and chronic illness world. And that’s where having a product like yours – I have to say again, I love them. I love the caramels and the marshmallows and everything. It was such freedom when I discovered Sweet Apricity. It was like, what …! There is a company that is for me? It felt like a gift. And really the whole idea came from a gift to your friend. That’s really what a lot of this is. But now, it’s also the gift that you can have yourself. And it’s amazing how it’s all come full circle with you joining this world. You just wanted to be in the club really, didn’t you? (laughs)

Tonya: Yes. I wanted to be able to not eat everything! Cool kids! (laughs) 

Lauren: Yeah, Cool Kids Club! So, can you walk us through what a typical day is like for you? I’m sure there’s no such thing as a typical day. But in terms of the challenges that you face with your health and how you’re managing symptoms, and how it’s affecting things like cognitive and physical functions?

Tonya: The biggest thing is cognitive function right now. And that is a combination of the mold and the heavy metals. And also the hormones. So I guess it’s this trifecta of functioning that isn’t optimal for me right now. I did just find this book called Radical Metabolism. I can’t remember the name of the author.

Lauren: I’ll find it and we’ll post a link.

Tonya: Especially with the hormones, so many people are say, “Just do keto. Just do keto.” It’s amazing. I did keto for 90 days, and my macros of carbs was at 12. And I had really great results; I think I lost 30 pounds. But my cycle regulated out. For the last three years, I have had a cycle every 28 days. They’re really painful. But they’re normal menstrual cycles. Which is amazing, because I haven’t had that in 20 years. But then at some point, my body just stopped doing well with keto at all. But again, there are the gallbladder issues. And nobody’s really addressing it — except in this book, this woman who wrote Radical Metabolism. She’s talking specifically about the importance of bile, liver function, gallbladder function. And she’s like, if you don’t have this, a lot of the keto books or blogs talk about taking HCL and ox bile — which again, it was the thing that the doctor who took my gallbladder never said anything about. He never said, you are going to have to replace …

Lauren: This is an essential organ! If you have this removed, you’re going to need to take some kind of supplement that replaces its function. So it’s amazing to me, because you’re not the first person I’ve spoken to who’s had an essential organ removed and had a doctor not tell them that they needed to, long-term, replace the functions of this organ.

Tonya: Yeah. So, I just stumbled upon this book a month ago. It’s been a game-changer, too.

Lauren: So day to day, are you really cognizant of the foods you’re eating? How are you eating now? And do you get to allow yourself to indulge?

Tonya: Um …

Lauren: It’s a bittersweet question, I guess. 

Tonya: Yeah. I am still able to tolerate nuts. Which is great. I’m able to tolerate butter, and coffee. There was a time when I was living on Bulletproof buttered coffee. Just because there’s no chewing time. Fixing a big salad … the time that I have to commit to chewing … it’s more than I can commit. It’s more than I can do in a day. So I’ll do a lot of smoothies. Basically, I’ll take a salad and blend it. So, the super nutrient dense thing … I’ll plug my nose and drink with a straw. It’s not for flavor, but just for getting nutrients. 

Lauren: I want everyone to really pay attention to this, because you’re having trouble masticating, right … a lot in one day, for longer periods of time … or with large meals, it’s harder for you because you have physical fatigue, obviously. But the lifestyle you’re living now … you have to plug your nose and drink your salad smoothie. This is what life is like with chronic illness. And I think it’s rarely acknowledged what these seemingly simple hacks feel like, and the sacrifices that we make for our health. You’re just trying to get nutrients in you, come hell or high water. And the way you’re doing it, to get that smoothie down … because you can’t sit and chew your salad. How that struggle is real. And it’s something that really gets in the way of everyday functioning; you have to think about, well, I’m not going to be able to chew this whole meal. Or, I’m not going to be able to think that far in advance. Our functions are impaired in that kind of way. And it’s great that you’re making these adjustments, and that you have a support system, who obviously is understanding of what you’re doing. But it is things like travel that really screw that kind of rhythm up. So, it’s really interesting hearing what you have to go through, but also I want everyone to really understand that this is the world of chronic illness. These are the sacrifices that we make. You run a health-focused food company. And you, yourself, still struggle with that. And that’s totally okay. And it’s totally real. 

Tonya: Thank you. Although just to be clear … it’s more about time factor. I can’t commit to chewing for the next hour, because there’s all this other stuff that needs to be done.

Lauren: And that’s part of being a female founder, and you’re a CEO of a business!

Tonya: Well, and not a disorganized one, but I am one with cognitive issues. So, I’ll work really hard to have my to-do list — and then I can’t find it the next day. So I have to reconstruct it. And I can’t remember what I needed to do, or why it was important. A large part of my day is managing myself, in a way that keeps us moving forward.

Lauren: Do you find that your staff, who are also your friends … do you find that they’re also finding ways to manage you, too? Or is it so stealth that you haven’t noticed yet? (laughs)

Tonya: It’s a little bit of both. There are things that I hold back and don’t show them — because I know where those lines are for them, where they’ll start to get nervous about, not my abilities, but kind of where we’re at. Will we be able to grow this company to where we need it to go, if she’s experiencing this? I’m aware of where that line is.

So I pull back and don’t let them see when I have my moments … where I’m in bed, and I’m, like, I can’t go on. I don’t know if I can keep this going.

Lauren: Well, we all hope that you will be able to, because you’re certainly doing a huge service for those of us in the chronic illness world with you. You’re talking about how you’re pulling back on things. Do you find that you’re struggling to find work/life balance, and that it’s even more challenging with a chronic illness?

Tonya: There’s lots of parts to that … that I don’t know quite how to answer.

I’m a farmer’s daughter from North Dakota. So work-life balance isn’t something that I grew up with. That wasn’t a thing … you just do the job.

What I find is that I’m slower at getting things done. And that’s because I get more distracted. Or, today my brain is really hot. I got a migraine last night, but I was traveling two days ago. And I had access to a chicken breast. I just asked for a plain chicken breast, right. But I’m sure it was caged and from Peru. I knew in the moment that it wasn’t the best.

Lauren: But it was the best available to you.

Tonya: Right. I was hoping it would be without consequence. What I find is that when I get inflamed, it’s usually about a 24-hour period before I feel the consequences, 20 to 24 hours. So I’m fine up until 20 hours later. That also brings challenges of trying to remember what happened 20 hours ago that is making my brain really hot. I also get ‘ghost migraines’, where it affects my vision. On the periphery. And that’s always interesting, because I forget that’s part of a migraine; my head doesn’t hurt yet, but I can’t see anymore. And then the headache comes on a few hours later. So that happened last night.

Lauren: And you’re doing things like scheduling this interview, and scheduling travel either for your doctors or for conferences or events that you’re going to with the company. So it’s a constant back-and-forth in that sense, isn’t it?

Tonya: Yes.

Lauren: You mentioned earlier, and and I like to ask this question … because I think it gives us more of a sense of the invisibility of these conditions … have you ever been in situations where you’ve been confronted, and forced to justify to people that you had something going on that they couldn’t see? 

Tonya: No. Not that I can think of. But I’m really good at distraction! And I’m really good at hiding this.

Lauren: So you’re also making a conscious effort to hide it so that it doesn’t become an issue.

Tonya: There’s also this other problem, too …

… and I think everybody who has a chronic illness will understand this … the questioning or doubt that it exists. Like, maybe I’m making this up. Like maybe, if I show up in this moment, and I can look somebody in the eye, and I can talk to them in a way that doesn’t make me look sick … maybe I’m not really sick. I struggle with that. Like, maybe I am okay, and maybe I’m fine and I’m just being lazy. Or maybe I’m fine and I’m just scared to engage with my company in this way, or engage with people this way. And that’s not the kindest internal dialogue to have.   

Lauren: No. And do you think that’s something, that maybe women or female-identifying people in this chronic illness world might be feeling that burden a little more acutely than someone who identifies as male? Or, do you think that’s something that you’ve put upon yourself as a woman in this world?

Tonya: I think that’s a fair question. I can answer from my perspective, and from information and data I’ve collected just from observing … probably, yes. It’s part of our gift, being able to hold things together. Or to step back and put the needs of things or people before us. So yes, I don’t think that’s an inaccurate statement. I don’t know what it’s like for a man to have a chronic disease …

Lauren: Yeah, and the other thing is, we can only speak to our own experience. But there are studies being done and there are observations being made in large-scale situations and circumstances that are indicating that women already feel that burden to take care of other people. And to get on with things.

Tonya: Or to play down our own – you know, sense of …

Lauren: Well, I don’t know if you’ve watched the show, Fleabag

Tonya: I saw a preview and it looks great.

Lauren: It’s fantastic. I was watching an episode in the second season last night … and this doesn’t give anything away … but one of the characters said, “Women are born in pain.” You know, we’re born with period pain, and being taught to sublimate all of that. And that comes up a lot on this show, too … if that’s already the default mechanism, then when there’s something going on, we’re trying to just plow through it. Because that’s what we’ve been taught to believe is what we’re supposed to do. So I think that’s a huge factor there. And then of course the factor of confidence in ourselves and having to re-learn perspective, really, when you get sick … when you’re already making what you’re going through less important than what everyone else needs to do. Especially for someone who’s running a company; I think that’s important to understand. So how important is it, do you think, that we continue to talk about these invisible and chronic illnesses? Obviously, you’re doing that because of your company, opening up those conversations. But how do we find our way through normalizing the conversation? What do you think about that? 

Tonya: So here’s how my brain goes when you ask that question …does it need to be normalized, first of all? That’s the first data point. Does it need to be normalized?

Well, in order to have people with chronic illness be able to walk through this world without feeling unheard, unseen, suppressed, dismissed … yes, we need to bring it to light. The best way to do that is to talk about it. And I think the other thing that’s really important is building community around it, building support.

And when you asked that question, the first thing I thought about was Wendy.

Lauren: And that’s your friend?

Tonya: Sorry, yes, my best friend Wendy. I just named her. How often she’s been dismissed by doctors who just think that it’s in her head. Everybody who has a chronic illness has that story. Of just being dismissed … or, take this antibiotic.

Lauren: Yeah, here’s a pill. This will make you better.

Tonya: Restrict your calories. Get more exercise. It’s not this comprehensive look at dis-ease.

Lauren: It’s an interesting word, ‘disease’ — in and of itself. So obviously, you’re trying to make these lifestyle changes to manage your own symptoms. Do you ever cheat? We know that you have to make exceptions here and there when you can’t control every factor that goes into what you’re eating, or how you’re sleeping when you’re on the road, and things like that. But do you have conscious cheats or guilty pleasures? Do you have a top three? Or comfort activities when you have a flare-up? Even like hopping in the sauna? Or taking a nap? Your Top Three secret indulgences, cheats, Guilty Pleasures and/or comfort activities? 

Tonya: Oh, goodness. I have a thing for a sour cream called Wallaby. I find myself getting really sneaky with my internal dialogue about eating it, because it’s cultured sour cream so it’s filled with all of this gut health food stuff. It’s unlike any sour cream I’ve ever had. The other reason I can get a little sneaky with dairy is that it does not inflame my joints.

[Dairy] messes with my brain chemistry in a really, really severe way — where I will spend three days semi-suicidal. I wake up almost suicidal. Luckily, I’ve recognized that’s the pattern with dairy and I can trace it back to that, and then I reach out for the help I need, because it’s overwhelming.

Lauren: It’s not something you can manage on your own – yeah.

Tonya: And then that kind of subsides to just general ennui, and then intense anxiety. I’ll wake up in the middle of night with panic attacks. Or I’ll realize that instead of having dreams, I’m having internal dialogue conversations about the futility of everything. And that becomes really overwhelming and really, really … kind of oppressive. So, dairy’s one I have to be really careful of, even though there’s a company that does fully pasteurized ice cream. Actually, ice cream has never been my thing. But in the summertime, the idea of it seems kind of cool. Again, I just have to back out and be like, you can’t do dairy without severe consequences.

Lauren: It’s not worth what it will spiral into.

Tonya: There’s a company that does a gluten-free bread which is really fun, if you want to have a sandwich. But again, it has rice, all of those things that cause pretty dire consequences for me. I can’t do tapioca, but I can do an organic non-GMO corn chip. So I have been able to reintroduce corn without great disaster. But tapioca … I can’t do the tapioca chips … I don’t want to name their company because they’re so amazing. I’m so in love with them as a company, and their product is amazing. But what happens to me is that I get inflamed at my spine. And all my joints get inflamed. And I have a spiral staircase. So getting up and down that when I’m super-inflamed is brutal.

Lauren: That’s one thing, I’m really glad I don’t have stairs in my place! I can just sort of roll into bed when I need to! (laughs)

Tonya: I’m so jealous! I thought this would be cool. You can’t even like scooch your butt up them. But the space is so cool. I didn’t think about that.

Lauren: It looks really cool. 

Tonya: Yeah, I would say that some sort of bread substitute is one of the cravings I have to fight against. When I do give in to it, there are consequences. And like I said, the other thing … and this is where I get sneaky with my internal dialogue and I have to be careful … is that because it takes about 24 hours for my reaction … that’s not entirely true. .. I get really hot … I can start feeling heat or energy move through my sinuses, and my cheeks and my ears get red in the back of my neck. But it’s not until 20 to 24 hours later that the pain arrives, in a way that’s pretty immobilizing. Like I said, I’m a cattleman’s daughter and cheeseburgers and french fries … they made my world go round. And ribeye. But I haven’t had to give up ribeye, which is awesome. I would say sour cream in the form of dairy and some sort of bread substitute.

Lauren: And probably also your sweets! They’re a nice indulgence that you can have without the consequence. 

Tonya: That’s true. There was a time when I had my own little kitchen and I had an entire kitchen crew who were so amazing and so lovely. But there were probably a few weeks where the only thing any of us ever ate were roasted marshmallows with Simple Mills chocolate chip cookies. 

Lauren: Oh, wow. That sounds amazing! I know what I’m doing later!

Tonya: If you’re going to do tapioca and almond … Simple Mills. And if you get the chocolate chip ones, you don’t even need chocolate on top. If you want chocolate in there, I highly recommend Hu Kitchen chocolate.

Lauren: Their chocolate is my go-to.

Tonya: It’s so wonderful. They do such a great job with it. But we also would recommend that the perfect ratio is: one hard crunchy chocolate chip cookie, to one piece of Hu Kitchen chocolate, to one or two marshmallows. But once you put the top cookie on, it’s too much cookie. So we end up using the chocolate squares as the top squish-er slider off-er, though. The women who worked with me in the kitchen … we would blend caramels into buttered coffee. And that was really fun.

Lauren: And you can do that, too, can’t you? You can take your caramel sauce and do that.

Tonya: We did it with the hard caramels, too, which was fun.

Lauren: And you know what I love about those hard caramels, too, is that they don’t stick to your teeth! You unwrap them and they seem like they’re sticky, and you’re, like, ‘Oh, no, if I have a filling, this might not be good!’ But they don’t get stuck in the crevices at all; they melt away in your mouth. 

Tonya: Yay! Customer love!

Lauren: Now can you also tell us … we started getting into this because you were talking about having community … what would your Top Three Tips be for someone, where it looks like they are possibly entering this world of invisible illness? What would you recommend?

Tonya: …

Do all the research, join all the groups, listen to people’s stories. Because you’re not alone in any of them. And it’s okay to question your doctor.

Lauren: Yep. I mean, I don’t know about you, but I’ve had to break up with one or two along the way! You sort of find your way through that, don’t you? But you have to give yourself permission.

Tonya: By the same token, too … I understand that functional doctors are expensive because they’re out of pocket. So there’s also this whole aspect of having access to services that some people may not be able to afford. Again, you can find incredible community. And if you can work on regulating your own food, you can start maneuvering your own health — which is so empowering. 

Lauren: Well, Tonya, is there anything else that you’d like to share with us about your journey to Sweet Apricity and beyond? As you’re continuing to navigate this world?

Tonya: We are trying to get into stores. And we’re finally working on these pieces that we haven’t been able to do, like just letting people know we’re here and working to get in stores close to you. 

Lauren: But until then, people can find you online.

Tonya: We’re at SweetApricity.com.

Lauren: Tonya, thank you so much for joining us. I’m so excited for people to hear more about your story, and to get to know you better. For me, I found these sweets, and it was awesome. But then I got to know who you were. And that made the experience that much richer for me. So I really thank you so much for making these products available, and for really fighting to make them available; fighting not only with the people who didn’t believe your friend, but also fighting through what you’re going through to make these products available to people in need. You’re really one of our heroes, and I can’t thank you enough for what you do. You really are an advocate, by starting a company with a basis like this — that makes you an advocate in my mind. And I wish you the best of luck as you continue to treat everything that you’ve got going on, and we’ll be sending you our well wishes. Thank you so much for joining us. And guys, go check out Sweet Apricity. Their products are amazing. And you can thank me later!

Tonya: Lauren, thank you for having us! And your entire fanbase: thank you for listening and participating.

We welcome your thoughts and comments!

%d bloggers like this: