Emily Varnese talks autoimmune disease, dietary interventions and naturopathic medicine.
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
I’m still behind on transcripts but I don’t have anything new to report there. I still think they’re super important and I’m still slogging away. My goal is to hire somebody over the summer to help me keep up, because this is getting untenable.
Today I’m talking to Emily Varnese about autoimmune disease, dietary interventions and naturopathic care. When we spoke, Emily was in the middle of the diagnostic process for an autoimmune condition but had been experimenting with alternative medical treatments for her symptoms for years.
I relate to Emily’s story so freaking much. Sometimes I’m amazed at how much of a difference these kinds of interventions have made for me, and sometimes I’m frustrated by the wellness industry that claims it can solve absolutely everything. Healthcare is messy and managing symptoms can take a lot of trial and error. I think you folks can probably relate.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
Brianne: So, I like to get started by asking people about their health as a kid.
Emily: All right, well, my health as a kid… I mean I think it’s hard because you have to kind of go off of what your parents tell you, it’s hard to remember exactly. But my mom always says I was pretty sick. I had eight ear infections before I turned one, so I had tubes in my ears at an early age. Basically if any kid was sick, I was going to catch it. Always. I had heart surgery at a young age, I was eight when I had heart surgery. So I think from the beginning I’ve always been struggling medically with something, but I didn’t really notice it as a pattern until I got older, if that makes sense.
Brianne: Yeah. And I think like, ear infections for people… you’re usually so little that you don’t probably notice them or don’t realize. I’m guessing you probably took a lot of antibiotics and stuff.
Emily: Right. And I think that’s the biggest thing that I’ve noticed from my current symptoms and ailments, that a lot of those are derived from being on antibiotics so much from a young age. And every single year I get sick around the same time, and they just pile on the antibiotics. Getting older and acknowledging that they can do a lot of good, but also do a lot of bad, depending on how often you take them, has been eyeopening and then just kind of trying to trace it back.
Brianne: Yeah. And something that I feel like there’s a lot more awareness about now than there was even like five years ago, I would say, let alone 10 or 20 years ago. Okay, so heart surgery at eight, which would also be a big deal.
Brianne: And then from there, so elementary school and high school, were you pretty functional in it?
Emily: I was functional. I mean, I participated in sports and clubs and everything like that. In high school, the biggest thing I remember, I was really sick for over a month. And my dad especially and my stepmom were always like, ‘you go to school, it doesn’t matter how sick you are, it is your job, you go’. And so I went, and now looking back, I think I had mono and had the symptoms of it and I even had teachers who are really concerned that I would seem down or like…and I’m pale, but I was extra pale and just things like that with them commenting. So I definitely remember that struggle and never being able to get over things quickly. Other people would be sick for a few days, I was always sick for weeks before I could kick things.
Brianne: Yeah, yeah. I also had very bad mono in high school and you’re like, Oh god, why is this happening?… just so tired. I think teenagers are supposed to be tired anyway, but it’s like…
Emily: Right, so it’s kind of hard to diagnose if like, you’re tired, you’re moody… do you have mono or are you just being a teenager?
Brianne: Yeah, yeah. Okay. So presumably you either kicked that or got used to it. So then from there, did things change suddenly or gradually, would you say?
Emily: So my story really, from what I know of, starts about two and a half years ago. So in college though, it wasn’t like my health was up and down, but not really because of antibiotics or being sick. I would get sick and they said I wouldn’t take care of myself enough cause I’d always push it. I’d still go to the gym, I’d hang out with my friends or whatever, I never would rest. I think for a long time the narrative was, I don’t take good enough care of myself. Which I think the medical professionals a lot of the time are quick to jump to that and I’ve been noticing that more and more. And in college too, I was diagnosed with ADD junior year of college, which is super late, I feel like, in life, to be diagnosed with that. Being put on that medication at the time seemed life changing in a positive way, but then as I got older, it really led to negatives because they didn’t really keep up with checking on my liver, my kidneys and things like that.
Brianne: Where you on like Ritalin or Adderall?
Emily: Adderall. And I had a doctor who would just double it sometimes or up. If I said it wasn’t working he would double. So they tried to go from being on 30 milligrams to 60 and the toll that that took on my body and having a heart condition, and anxiety, it just was over the top, just really rocked my body…like chest pain, chronic chest pain, ending up in emergency room and not knowing that it was coming from that medication. That started even before some of the autoimmune symptoms. But two and a half years ago, we went to the Cape to celebrate our one year anniversary and it was as if I just woke up and was different. So the night that it happened, I had this really intense chest pain that came on suddenly, we were in bed and it just hurt like a heart attack and went shooting down my arm.
Brianne: That would be scary.
Emily: It was absolutely terrifying and luckily he’s so calm, my fianc√©. So he just calmed me down and we got through it. But it didn’t stop, it kept happening after that. And when we got home, it was as if I had this cold I couldn’t kick. I ended up having sinusitis, is what they diagnosed me with, and I had sinusitis for eight months.
Brianne: Wow. Okay. So, inflammation basically, idiopathic inflammation.
Emily: Yeah, but it wasn’t taken seriously enough and it literally rocked my world. Like just like couldn’t sleep at night, constantly coughing, to the point where sometimes I thought I was going to pass out from not being able to breathe, it was so intense. And on top of that headaches came with it. It literally felt like I was drowning in my own snot, is how I would describe it to doctors. And on top of that, I was getting this insane chest pain, which of course they always associated with the coughing. And later they decided it was costochondritis, which at the time, made sense. But basically every time it came on it felt like a heart attack. And with my background with having heart surgery for SVT, it was always taken super seriously. I’ve spent so much money in the emergency room for this chest pain that was related to the sinusitis and the coughing. So that went on for eight months, and the reason why it did is because I had this doctor at the time who I really should have left sooner, but I didn’t know any better. My whole life, my mom worked for DHMC and I grew up going to Dartmouth-Hitchcock and it’s a fabulous hospital, I think they’re amazing there. So I just know the medical world, that’s what I know. I never knew about the naturopathic world at all at this point in my life, I was really dependent on them. This was my first doctor away from home so I just kinda stayed with him, if that makes sense. But he was really not the best. He’s the one that upped my Adderall medication like crazy, which really should only go up in increments of five milligrams. And he also would listen to my breathing and just be like, ‘Oh wow, I think you have asthma.’ And I’m like, ‘yeah, of course I have asthma. I’ve had asthma since I… well I’ve been diagnosed with asthma since I was in ninth grade and I’ve been seeing you for three years, I don’t understand.’
Brianne: This shouldn’t be news, this should be in my chart.
Emily: It shouldn’t be news, I’m in my twenties now, this is not new. He always promised me that he would refer me to an ENT. Literally, the ENT place was right next to my doctor’s office and it took months. It took me going in there on a day I was not scheduled and just making a scene, which is totally not in my comfort zone, but I just was like, I need to fight for me and to feel well because this is literally getting to the point where I’m not having the energy to go out and see my friends on Fridays, I’m bailing all the time. I’m a teacher. I’m at school and I’m literally dying. I couldn’t even read out loud for the kids because I couldn’t catch my breath. That’s not normal. And what made me realize my chest pain was so bad was leading mindful moments at school with this deep breathing and I couldn’t do it without this intense feeling of pain on my chest. I felt like I was letting the kids down and I’d have coughing attacks and be over by the trash spitting stuff up. It was so embarrassing. I’m trying to lead a group of fourth graders and their teacher can’t even talk normally. It’s my second year of teaching, mind you, so not a 10 years under my belt and this is the version of me that they’re getting. So after that I did get to go see the ENT, and we immediately… they always associate it with my asthma, ‘oh this is all caused from your asthma.’ So I’m put on all these different inhalers, one where you have to rinse your mouth out or you’ll get sores, like just ridiculous things that I have to do and all these medications. I tried so many antibiotics during that time and I only got worse. I would get stomach pain from them or I’d break out in hives, and none of the symptoms improved. So he ended up doing some allergy testing, blood work wise, and also the needle pricking that they do on your arms, and finding out that I’m highly allergic, like a five out of six for dust and dust mites, which is huge because I work at a school, and you cannot get away from that. We lived in a really old apartment at the time. I literally, we went home, we bought a new vacuum, we bought all the allergen pillowcases, spent hundreds of dollars on all this plastic stuff. I live in the plastic bubble, I felt like. I did notice some improvements from that. And I found out I’m allergic to maple trees, birch trees, Johnson grass, Bermuda grass, mugwort weed, which is found on so many different foods unless you cook them. To me it was like, all right, well this is starting to maybe make sense, we can do something about this. But I still couldn’t stop coughing at night. My friend Emily suggested essential oils and those literally changed my life. It was the first time I’d ever been able to sleep through the night, when I started those.
Brianne: And what were you doing?
Emily: I was using melaleuca, peppermint, breathe, so it’s all doTERRA based… and in my diffuser and they just helped me breathe. If I didn’t have them.. and like lavender, lemon… If I didn’t have them, then I would just start having the cough attacks again. So all of that, and then I started taking a nasal spray and Allegra again daily because I did have allergies as a kid, like severe allergies. I always was blowing my nose as a kid, always blowing my nose more than the average person, the thing that embarrassed me as a child and now I’m like, this is me. I carry tissues everywhere, whatever.
Brianne: Can I interrupt you because I just remember this, even though this is like bad hosting protocol. I have a very vivid memory in high school… my nose was always running and I was sneezing and I didn’t have a tissue and the teacher was giving a lecture and I asked to go to the restroom and she said no because she was so mad at being interrupted. But I was like, there is snot coming into my mouth, I’m not staying here. I’m 16 years old. You can’t… no, I have some dignity.
Emily: No, this is like way too old to have snot down my face.
Brianne: Yeah, like this isn’t appropriate. Anyway, sorry, not relevant.
Emily: I can relate though. When they’re teaching and the tissues are placed at the front of the room where they’re teaching, you’re like, I need to get a tissue, but I don’t want to interrupt the lesson, that anxiety. So now as a teacher, I have them dispersed all over the room because I never want a kid to feel insecure or upset about having to need to blow their nose, which I feel like I lead by example because I just do it whenever I need to.
Brianne: Yeah. So you found… you’re taking allergy medication in the daytime plus sleeping with essential oils or just generally diffusing?
Emily: Yeah, sleeping with essential oils, diffusing whenever I felt necessary, but definitely at night, to the point where I traveled with them everywhere. If we’re staying over somewhere, then it’s a necessity for me, I felt. And if I didn’t have it, I would even just diffuse a lemon. I know that sounds crazy, but anything helped.
Brianne: Yeah, you were like, scents make a difference.
Emily: Right. But even with all of that, my quality of life was still just so much less than what it had been before. Which is funny because now… fast forward to where I am now, I’ve dealt with a poor quality of life my entire life without realizing it, because to me it was my normal. So at that time, after that, my fiance’s mom has IBS and some other stomach issues that go on. So she’s like, ‘I have this amazing naturopath that I would love to hook you up with.’ And I was like, all right. We had talked about it for a long time before I went. I had suffered for eight months before I even went back to the ENT, and then once at the ENT things had started to improve. It still didn’t feel like me, if that makes sense. It felt like everything was just kind of helping the symptoms without finding the cause. Because that’s what medical doctors are great at, they’re really good at helping the symptoms, really terrible getting to the root cause and servicing that. Which is why going to a naturopath is so wonderful because they want to know, where does this stem from. I met with this naturopath, and she literally looked at me and said, ‘you have all the makings of an autoimmune disease and we can try to catch it now and hope that it doesn’t become an autoimmune disease,’ which made a lot of sense to me because when I ended up in the emergency room one of the times with my chest pain, they did a bunch of tests. One of them was an ANA and I came out cuspy, so enough for them to say, ‘Hey, you know, this was a cuspy test, but you know…’ and one of them was lupus that came up, and they’re like, ‘but not… not enough for us to pursue.’ I was like, okay. I literally have never felt like I’m dying so much. I was also having extreme back pain at the time, too, and the headaches and everything and all of the sinusitis. My doctor said it was cuspy, and in the emergency room they told me that they couldn’t help me, I created it in my head.
Brianne: They told you that it was in your head. Sure, great, thank you.
Emily: The doctor literally looked at me and said, ‘I’m sorry, but for what you have, we can’t help you here.’ I can’t tell you how many times I’ve been given lorazepam for anxiety. And I’m the first person to own it. I have anxiety. I struggle with it. I’ve been a worrier my whole life. I run high strung. I mean, I have ADD, it comes with the territory… you’re going to be an anxious person and you’re going to be hyper and all over the place. But I just, I don’t know. The way that they made me feel that particular time at the emergency room will never leave me. It was probably one of the most depressing experiences I had and I felt so misunderstood and like nobody got it. And sometimes it even made me feel like maybe I am making this up. Maybe there is something mentally wrong with me. And they really made me feel that way because my first doctor, before I got the strength and the foresight to leave, and the emergency room doctors really felt like together, they were trying to paint it as if I was, you know, making this up…
Brianne: Just like, hysterical.
Emily: Yeah, like hysterical, wanting to find something wrong with myself by creating it. And that’s always stuck with me and made me self conscious. It’s almost even hard to talk about it or be honest with how I was feeling because going out to eat and going to places with friends was really hard. I didn’t have the energy or the ability to breathe a lot of times in a normal way. I couldn’t even go outside and do the things that I love to do, like missing out on going on hikes with my fianc√© or missing out on going out to dinner, going out for drinks because by Friday I would just be wiped. And then to seek medical help and be told, ‘well it sounds like it’s in your head and you’re creating it. Like this isn’t that bad, you’re making it sound worse than it is.’
Brianne: Yeah, you want a problem.
Emily: Right. And I just wanted to feel better.
Brianne: Yeah. And I’m sure with chest pains and breathing, like lung and chest problems, which I guess are kind of the same, but heart and lung problems we’ll say, both of those are so already tied in with anxiety because it is also true that those are affected by anxiety. So when you show up with that, it’s even easier for them to be like, ‘no, no, you’re on the anxiety path.’
Emily: Right. Oh God, and then I flipped out, I’ll be honest, in the emergency room, because I had already gone so many times for this. Because the thing is, is I always try not to make a big deal out of it and I go to urgent care and I’m like, ‘I’m just here to, you know, dot my i’s and cross my t’s, to make sure.’ Because I, you know, with SVT, which I have, I had an ablation and with that, if it’s not monitored, it could come back, doctors have told me that. So I’m like, let me just make sure, because this is… I’ve never had this pain. Since I was eight I haven’t had any issues. It would make sense, we’re almost 20 years down the road, it could be happening. And they would always freak out at urgent care and send me to the emergency room just to then be kind of talked down to and told that I’m creating it or I’m wasting their time.
Brianne: It’s not an emergency.
Emily: I’m hysterical, you know? And it doesn’t help that I do not do well with needles. Of course I have a phobia of that, I try my best but there are times where I’ve had to go in the middle of the day because my school nurse sent me because my blood pressure was elevated or things like that and I had to go to the emergency room. So I’m also alone… so that time, when they gave me lorazepam and I was like, ‘you are the reason why there are so many stigmas with mental health and mental illness issues,’ is what I said. And I just threw it on the bed and left. Because I was done. This is not… I’m not taking it, those pills make me drool and pass out. I’ve tried them.
Brianne: They’re not for you.
Emily: They’re not for me. And they’re not helpful. And I mean, I know people are on anxiety meds that do help them, but I have found that the natural route is way better for me with anxiety.
Brianne: Yeah. And I think that’s so body specific. So many people that I talk to run into this issue where they’re like, something’s wrong with my body. I go, I’m either diagnosed with a mental health issue or kind of written off as one without an official diagnosis, but recommended mental health medications. And mental health medications, like I’ve talked to so many people that they help, I believe that they help people. And if it’s a physical problem, they might not be what you need and that’s okay too. Like God, it’s so frustrating, this thing.
Emily: It is frustrating. And the whole idea of like, oh, you came out normal on a blood test. I can get into that more later on in my journey, but just the cuspy thing, it really upsets me and I can explain that later, but… I can try to go in order for you. So I met the first naturopath, we had that conversation, and I had a good experience with the first one. But one thing that’s hard is I do want a duality, I want them to be a naturopath and think about the root causes and treat the whole body, and especially the gut. But I also want them to do some medical tests. I think it needs to be backed by blood work or other things. And she didn’t do that. I loved the first one in the sense that she was kind of like a therapist the way she just let me vent about this awful experience that I’d had. And then also, you know, really letting me know… she was the first person I met that was like, ‘no, this is real. The things you’re feeling, the symptoms you have, they’re real, they’re valid.’ I literally cried because I was like, no one has ever made me feel that.
Brianne: Yeah. It matters so much to hear that.
Emily: It does, especially when you’re quietly just suffering. I can’t even read aloud to my students. How am I making that up in my head? Because I don’t know. I would try to think about it, like maybe I am, and then I’m like how, how am I creating these physical ailments.
Brianne: And why?
Emily: And why would I want to, I just, I don’t understand. The best thing that she did for me was diagnosed me, you know, in a sense with, let’s look at your allergies, I know that those exist. Okay. How can we take the things that you’re saying to me and figure out a remedy for you, which basically look like little sugar pills that dissolve under your tongue, which all my friends are like, what are you doing? They don’t get it. I don’t think I do a great job explaining it, but it’s homeopathy. We tried a few before we got to my, you know, the one that worked for me the best and mine’s called medorrhinum… Literally it’s like a different person. I don’t even need to sleep with tissues by my bed anymore.
Brianne: That’s life changing.
Emily: It’s literally life changing. I’ve been like this since… I feel like I came out with a tissue in my hand out of the womb, so this was huge. And I’m not going to say it’s perfect all the time. Sometimes, you know, certain things fire it up, like with my diet, which I can get into later, but it was insane. I didn’t need the diffuser anymore and I couldn’t use it because peppermint, especially any mint things offset my remedy. I have to be careful, especially if.. I’ve noticed if I use, cause I love Melaleuca, it’s my favorite thing… if I use it regularly, it offsets my remedy. So it is finicky and I don’t wear a lot of perfume anymore, I wear hardly any. So it’s changed me in that way and I have to think about not drinking certain teas, and we changed our toothpaste, but it’s so worth it because one, I can breathe. Two, I’m not filled with snot everyday, I’m not choking on my own phlegm. My chest pain started to alleviate a little bit, but it still was coming back at that time. But just the fact that something occurred where one, someone believed in me and two, gave me something that helped, I was sold.
Brianne: Yeah, something changed…
Emily: It was amazing. And I’m still on it to this day. I swear by it. I don’t work with her directly anymore because after that she had put me on all these supplements, mostly like juice plus and stuff like that, which later I found out are filled with soy and other things that are not the best for me personally. And I started bloating like crazy. I kid you not. I went, I got a new doctor and I went to see her and it’s funny with her, she is the nicest, sweetest person I’ve ever met – I don’t know if she’s the best doctor in the world, but literally anything I say to her, she’s like, ‘sure, we’ll do that.’ If I go in and I say, I want to try this or can we do this, she’s like, ‘yes. Anything you want, anything.’ She does take me seriously. And she’s very open to homeopathy and naturopathic care. I think it’s a win. Just the fact that she’s willing to hear me out and she checks up on me…
Brianne: And you can talk about it at all. So it’s not like, compartmentalized.
Emily: I can talk about it, right. And does she try to put me on antibiotics every time I’m in there? Yeah. But she’s also okay with the fact that I’m like, no, no. I’m not going on a steroid again, or an antibiotic. Because at one point she put me on three different rounds for this horrible ear infection I couldn’t kick and it never worked. And now I kind of get why. But at the end of the day, I do have a better doctor and this naturopath gave me that great remedy, but she couldn’t help me with the bloating. And she was actually feeding me supplements and things that were contributing to the bloating. Or when I would go see my regular doctor and walk in, cause I wanted to go bloated, and luckily it lined up that way. She’s like, you look six months pregnant. Just to put this into perspective, the time that it started getting really bad, I was going wedding dress shopping. You can imagine the horror that I felt. Not only do I already struggle sometimes with body image, but let’s throw a six months old belly on this gal and send her to pick out a wedding dress for a day that will be in pictures forever.
Brianne: Yeah, lots of photographs.
Emily: Awful. And it was painful. My bloating in the beginning was so painful and huge, like just ginormous. And it felt like everything I ate made me bloat. So for the wedding dress shopping day I ate nothing so I wouldn’t bloat. But I mean, that doesn’t make anyone a nice person…
Brianne: Right. It doesn’t really help with the day going better.
Emily: But I knew it was necessary to be able to even have an opportunity to find a dress that was gunna work. It needs to be close to what your size is, otherwise you’ll have no idea.
Brianne: Yeah. And it’s hard when you’re fighting with food. I feel like this comes up a lot where you’re like, I think food is important. Sometimes food doesn’t like me. I’m trying to find a happy medium.
Emily: Right. So at this point I was on an adrenal support and some other supplements, mostly just to get more fruit and vegetables. Cause at this time I wasn’t eating a regular amount of fruit and vegetables, or the daily servings that you’re supposed to have.
Brianne: Did you find you had trouble digesting? A lot of people have trouble with raw vegetables, for example.
Emily: Not quite, at this point I hadn’t really recognized my food allergies… yet. We’ll get into that. This has been absolutely life changing for me. I was on sinatrol to help with the post nasal drip and I was on all these great things. I came off of Adderall, completely cold turkey. Best decision I’ve ever made. That made a huge difference. I was having palpitations to the point where I’d be standing still and it was 125 beats per minute and the cardiologists at the local hospital told me that was normal for my age, which is not true. I know it’s not. I had heart surgery because my heart rate used to get into the two hundreds, all by itself, standing still. So I’m like, this is not. And for awhile I was like, maybe it’s my normal cause my heart has always been faster than others, but it’s not because since I came off Adderall, my heart’s at like 80 70 low, you know, and when I sleep it gets into the 50s and 60s where before I was sleeping it would be in the 80s cause of the Adderall.
Brianne: Wow, yeah. That’s very high.
Emily: Yes. They told me I was normal. It was really hard and working out I’d get into the high 190’s and I’m like, something’s got to change. I should be in the 150 -160 range for my age. So coming off of that was awesome and my first naturopath helped me with that. I came off the extra inhaler, and that’s when I really started to oppose taking antibiotics unless it was a high necessity, something really chronic. So after that I.. we have this, my really good friend Emma, wanted to move over this way and I said she could move in with us. And I’ve always known she had stomach problems, like a lot of stomach problems. And she told me that she has candida, which is basically, like we all have yeast in our gut, but it’s too much yeast, a copious amount of yeast in your gut, which can cause bloating, stomach discomfort, bowel issues, headaches, everything, lots of bad things. She told me about her naturopath that was just absolutely life changing, cause she suffered for five years, found this out, and is almost 10 years in the healing process now. And we grew up together and I always knew she had stomach pain and she’d always tell me what it was. But you know how it is, unless you’re experiencing it, you’re kind of like, oh yeah, well, sorry, that’s interesting. So I went to see her naturopath and we went over, you know, my symptoms and my story kind of like we are now and she’s like, ‘let’s do some blood work.’ I was like, this is the kind of naturopath I want. And she doesn’t do the remedies or anything like that. But she was very open to my remedy and making sure that we stayed with that. The best thing that she ever did was this 96 food panel. I don’t know if you’ve heard of that.
Brianne: Through Alletess?
Emily: Yeah, mine’s from US BioTek.
Brianne: But like a food sensitivity, IGG, whatever…
Emily: Yeah, yeah. And it was absolutely life changing. So I got that back, we did that test first and when I got it back, it was crazy. The foods that I eat the most often, I was wicked allergic to, or sensitive to. And we did a stool test, which showed that I had a lot of yeast in my gut, like a huge amount. I even have… she was even telling me that I had a certain bacteria in my gut as well, that if it gets to the next level, it would turn into a lifelong disease. So if we didn’t start really treating it, you know, I was on the cusp just like that other naturopath had said without any medical evidence, but she was on to something, I guess. So I immediately tried to avoid those foods as best I could and I did, but she wanted me to do a half cup of grains in the morning, a half cup at night and a half cup of fruit in the morning and a half cup fruit later in the day. And the fruit was fine. The grains? So hard, like, couldn’t do it, just having them anyway and having more. But cutting out sugar, I had already noticed a really big difference and I realized I had been addicted to it for a long time and my energy level was the first thing that improved from cutting out sugar and my high sensitivities, which for example, my highest ones are almonds and pineapple because I eat them all the time. Since my stomach lining has kind of become permeable, anything that went through, I’m sensitive to now. And when I go out to eat, you know, I call them allergies because when I say sensitivities, I’m not taken seriously. But their response is very similar to an allergic reaction when I have them. I get the bloating, I get what I call a rubber band headache. It feels like somebody’s just put something as tight as they could around my head. I get foggy brain. I even get rashes, I get rashes all up and down my legs, which they say is dermatitis on my toes up my ankle. I have horrible cold chills all the time, I’m always freezing. I get little red bumps everywhere and my congestion kicks up. Very interesting. I also found out I’m super sensitive to all types of eggs, even duck, I do not discriminate, like, I don’t want it. Dairy, gluten, wheat, all of the normal things.
Brianne: Yeah, the usual suspects.
Emily: She was shocked because I didn’t have yeast come up on my sensitivity test, which if you have candida, typically you also can’t have yeast. So I avoid that regardless, just to be careful. So when I went back to her, I was like, I’m glad that certain things are improving, the fatigue has really improved a lot, but nothing else really had, I almost felt worse. And this is about when my knee started acting up, so my left knee bloats up and fills with fluid. It gets so stiff all the way up my thigh that I almost can’t even bend it or move. And I love to work out. I really love Zumba and cardio kickboxing and squats and lunges and I was starting to really impact my ability, my mobility. Some days at school I’d be limping around and I don’t know… it really concerned me because my mom has an autoimmune disease. She has spondylitis, and she’s also had both of her knees redone, and I have a lot of similar symptoms. So my first doctor had done x-ray tests, I guess, on my back for that, but my back actually hasn’t been hurting at all because I’ve been seeing this incredible chiropractor who I sought out after the whole sinusitis thing for my back pain, since my doctor wouldn’t help me at all at the time. And that’s been life changing. That knowing that this runs in my family and they also have rheumatoid arthritis, has been hanging over my head so to speak. So I’ve just been kind of trying more to advocate for myself and make known that these things run in my family.
Brianne: Yeah, that they’re both genetic possibilities or environmental possibilities or however that works.
Emily: Exactly. And wanting to make sure that it’s accounted for because I haven’t been taken seriously by medical doctors, even though I have the symptoms and the history to be taken seriously. So at my naturopath, I always bring that up to her. The bloating didn’t stop and neither did the chest pain. So I was still going to the hospital, you know, a couple times every few months, and it could always be kind of spoken away like, ‘oh, if you reached weird, like behind you, or if you mess up lifting weights.’ Or anything like that and I’m like alright, yeah, that makes sense. Okay. So it always got masked as costochondritis or like, oh, you’ve been coughing a lot. So I went to my naturopath, I was like, ‘my chest pain is back, the bloating is still happening,’ and I mean, I was upset with her. I think I cried at the thing cause I was like, ‘I thought we were onto something here.’ I got this diagnosis of candida, all I’ve wanted is to know what’s wrong with me. I’ve cut these foods out, except for grains, I haven’t fully been able to kick that yet. And I’m not getting better because I think this far in, I only started seeing her this past October. So I really haven’t been seeing her long, but I, you know, I’ve been suffering in my mind for a long time… now listening to this podcast, I’m like, my journey is nothing compared to what other people have gone through. I’m going to need to be a lot more patient. But it’s hard when you’re the one living it day in and day out and you’re 27 years old and you can’t do the things your friends do. You can’t drink, you can’t stay out late, you can’t work out the way you want to. I just feel I’ve missed out on years sometimes with this, because I couldn’t do the things I wanted to do. And so we sit down and she’s like, you know what? I think we need to explore SIBO. Which is I think, bacteria in your small intestine…
Brianne: Yeah, I think it’s small intestine bacterial overgrowth?’
Emily: Yes. Which is horrible to kick, but everyone knows that I think that’s ever had it or has been told they might have it. And that’s done through a breath test, which mind you, I’m paying hundreds of dollars every time I see these naturopaths. Every visit was close to $300, every test is $175 or more, each of these ones. But to me, at this point, I’m willing to spend whatever it takes. Keep in mind, I’m a teacher, too, so it does not… it’s been really hard to balance it. And we had just bought our townhouse, we’re getting married. I had a lot going on and a lot for them to kind of say, well you’re stressed, you know, or your age is… or this, because my life is busy. But I think you could say that about anyone’s life. So I do the SIBO test and with this naturopath, I really think she’s fabulous, but she’s so busy and her availability is small. So it takes months sometimes to get my results back and a lot of times I’ll ask them to be mailed to me ahead of time, but with the SIBO one, I was like, you know what, I feel like I know enough about it to start treating myself. I was literally 110% sure this is what I have. I have every symptom, my stomach is like perfect, my chest. So with the chest, it’s connected to SIBO a lot because your stomach is sending up this acid and it feels like a heart attack. So we started me on Zinlori, which is a pretty strong form of zinc. And then Rhizinate chewable. And I kid you not, as soon as I started that Rhizinate, so the Rhizinate works instantly, the Zinlori takes about three months to really get in your system. My chest pain is gone, it’s completely dissipated. I haven’t had any since we started that, it’s insane. And I’m off the Adderall too.
Brianne: Yeah, but you had been off for a while, and were still…
Emily: Yes, but I was still suffering and I’m not taking both inhalers cause inhalers also increase your heart rate. And then on top of that, we’re taking the Rhizinate and the Zinlori. So I started that at the same time that I did the take home test for SIBO, so she doesn’t know yet that that’s worked. I found this amazing person on Instagram, which I will put on this podcast because I think anybody who suffers from SIBO should check her out. Her name is Phoebe Lapine, she’s fabulous. And she found something that kicked her SIBO in four months. She also has hashimoto’s, she’s had all this stuff in her gut, like horrible things, and she’s so positive and has this great outlook and offers all these wonderful resources. So through her I was like, you know what, maybe I do have SIBO, who cares? I’m gunna beat this. I felt like I had this plan. I was really excited. And I put myself on the FODMAP diet. Since usually when you have SIBO, it’s a lot from foods that ferment and you want to avoid them. So I started taking out things like broccoli and literally having a bare bones diet, but I was still eating, you know, sweet potatoes and a couple other things like black beans, onions, things like that. But I took out other aspects and I noticed some improvements but not huge. Nothing to be really like, wow, this is so worth it. But I assumed, you know, it takes time. So then I went to see my naturopath and she pulls out my results and they all came back negative, like total zero, flat line, no SIBO at all. And I was really upset, to be honest. Super upset and disappointed because I thought I had the key to unlock this and be healed. Especially with this wedding looming over my head, I’ve been gaining weight and I can’t not gain weight or I stay stagnant, and I work out five days a week, I’m eating the best I’ve ever eaten and I have this wedding hanging over my head. So to me, that has been really upsetting to me. And then the quality of life and missing out I think are the biggest things. So I felt, cause with the four months, if I get it in four months, I’d be ready for the wedding. I could drink again, I could do all this fun stuff with my friends. It was very upsetting to me. Then when I met with her, she’s like, all right, it’s not that. And we had discussed actually doing a lyme test because of my knee and I had been seeing this really wonderful woman named Tina. She’s an RN and massage therapist that started this rapid recovery relief center here in Dover. And she’s got orthopedic training and she had looked at my knee and she’s like, you know, it really presents like lyme, which to me, I was like great, fabulous, that’s what I want. So when I went back, I was expecting my naturopath to say okay, SIBO came back negative, let’s look at lyme. And she didn’t. We actually ended up talking about thyroid and adrenal testing and I found out, at a funeral for my step grandmother, that my aunt has really, really bad adrenal fatigue and hypothyroidism, as well as my dad’s mom has hypothyroidism, which you would think I would know, but we just don’t talk about it as much on my dad’s side.
Brianne: Yeah, it’s easy for that stuff to stay underground, kind of.
Emily: So when she said I didn’t have SIBO, I was like, oh, that conversation kind of popped in my head and I brought it up and she’s like, ‘I do think that actually would be really worth looking at.’ And she said to me, which at first I was very upset about, ‘I think you need to start also working on your stress levels.’ She’s like, ‘you’re producing a lot of cortisol and any way that you can work on your mental health, your stress and your anxiety.’ Okay. To me, it was like, you’re saying this to a girl who’s been suffering for two and a half years, probably longer without realizing that this is not normal. Who’s also getting married in the middle of a possible job change. Just bought a house. I just felt like the world is piling up and I don’t know what’s wrong with me and that really upset me deeply. I’ll be okay about it some days and be really positive, but I do find myself getting in bouts of just feeling really sad that I don’t know what’s wrong, especially recently as I got more tests. After that happened, she sent me out to do blood work for my thyroid and also do a spit test. Not a breath test, I’m spitting, which was really a gross test honestly.
Brianne: That’s the horomone test, cortisol throughout the day.
Emily: Yeah, for my adrenals and horomones. At that time, I really.. I cried, I’ll be honest, I cried the whole way home because I know it sounds weird, but I wanted to have SIBO because I felt I was prepared for SIBO. I felt mentally prepared, I felt educated, I felt strong, like I can do this. I always call my fianc√© Kevin after every naturopathic appointment, and typically I’m upset every time I go. It’s hard, because I always come back with more things that I have to avoid or more tests to do, more bills, and just a feeling of not knowing. And the unknown is more terrifying than I think I ever thought it could be. When I was little, when my mom was dealing with that and taking it on and curing it for me, and now it’s in my lap and as much as I want my friends and parents to get it, they can’t and they don’t walk in my shoes.They can support me and they can love me and they can listen. But at the end of the day, no one gets it. And having my friend Emma, who also has candida, it’s been wonderful to have the support, but our symptoms are different. They’re not… it’s not this one box you fit in when you have candida, or you have whatever it is that you have. There’s so many variants and she’s so much further in the process, but her always telling me, ‘Emily, it takes time, it took this many months or this many years for me to feel a change,’ has helped a lot and put it in perspective. But after that visit, I just needed to be sad and kind of cry the SIBO test away. So I went back and I did the thyroid and I did the adrenal. I also decided to get a therapist because I do take… coming from her, who has validated me this whole time, and then her saying that to me meant a lot more to me than a medical doctor who didn’t take the time to know me, never validated my symptoms. You know what I’m saying? Like, she’s right. And I started listening to Rachel Hollis for podcasts, Rise, and reading her books. And my mental state just changed so much. I feel like my stress is so much less and I feel more able to recognize what’s anxiety and what’s real. And I know anxiety is real, but like what’s my anxiety kicking it up and what’s how I really feel about it deep down or how to put it in perspective. So I’ve been doing that, basically hit rock bottom, in my mind, in December or right after Christmas, couldn’t get out of bed, really down. And after that, I sought therapy, I did the thyroid test, I did the adrenals test, I saw that naturopath, and we joined a new gym, which really helped a lot. And I don’t know, I just started to feel different. And then I decided, you know what Emily, if it is thyroid, if it is adrenal, that’s autoimmune based. And there’s a lot of evidence on both sides of your family that it’s autoimmune. And the way that your body literally attacks itself and makes fluid build up in your hands, your knees, and your stomach bloats, like all these things are really clear signs. And especially having dermatitis on my toes. Those are all really big symptoms of autoimmune diseases. So I did some research and I found this autoimmune reset diet. And it’s supposed to be just for 30 days, but basically you can have a lot more than what I eat on it. But because of my sensitivities to dairy and apples and tomatoes and onion and garlic and all these random things… Oh, I forgot to mention, when I took out sweet potatoes, black beans and onion based on my naturopath before this diet, I stopped bloating at lunch. I was bloating at lunch every day.
Brianne: It’s all weird puzzle pieces, right.
Emily: So I listen to this podcast a lot, I’ve been listening, especially preparing for this, but I notice a lot of people don’t see the benefit in food, and I want to give a different perspective because I solely believe that my journey and my improvements have been one, mental with the help of a therapist, but I think it’s working because of the food. And my body is responding. So I had about a little over a month before my next naturopathic visit. So I started this by it. And basically what it is for me is vegetables. No nightshades of course. Lots of salads, any protein, I’m not sensitive to any proteins. Woo woo! And fruit in moderation, but I only have berries. I tried kiwi, kiwis make my knee blow up, and I notice… this is the first time I’ve ever truly had zero grains, none. Hardest thing I’ve ever gotten rid of. I thought sugar would be the hardest, but grains are way harder because I love my nachos. I love, you know, who doesn’t love a good crunch? I did that for 30 days and it was life changing. And upping my magnesium as well at the same time, headaches dissipated, I hardly have any headaches anymore when I keep up with my magnesium. And then I doubled my magnesium at night. My sleeping has been better, then my fatigue and my energy levels improved even more than they had before. I hardly ever bloat anymore. My knee doesn’t swell. And if I do end up having something outside my diet, it’s crazy. I get foggy brain again. The headband headache comes back, my knee blows up like a balloon, like, crazy, the difference. So I put myself on that diet with nobody else telling me. I was just honestly at my wits’ end with everything that happened. I was at the lowest point, and I’m a very happy, upbeat person. I honestly was like, maybe I’m depressed. I don’t know. I didn’t go to school for a few days. I was so down, and stuff going on personally too. And going to this diet, I literally for the first time felt there was hope, which sounds sad, but it was the first time. And I told Kevin that already, I can’t even believe I’m able to do some of these things or come home and not crash immediately. So that was really life changing for me. That has been huge and it feels like sometimes I woke up one day and my body’s like, yeah, we just don’t remember how to process grains.
Brianne: Yeah, they’re not for us.
Emily: They’re not for us, yeah, exactly. I feel like that’s kind of what happened to me in a weird way. And I can relate because some of the other podcasts I’ve listened to, they said I went away on vacation and something happened and I’ve never been the same. And that’s kind of exactly what happened to me in a lot of ways. And I know it’s deeper than that and it roots way back to my childhood, but it really does feel like that sometimes. So then I went back to the naturopath, only like a month ago now. So this is very recently, this is this year that I’ve been noticing. Oh and the other big things that happened – so before I saw the naturopath, I did 30 days on that diet and now I’m just living that diet and it’s been so impactful. And I did the magnesium and I did those tests, and the Zinlori and the Rhizinate, all life changing. I was able to drink and get drunk for the first time. This is big for me, at my age, and the norms and whatever. For the first time in over two years, I was able to be drunk and it was glorious. I was so excited. And I haven’t done it since, I did it one day because I worked hard. I did 30 days of that diet just to try drinking one day. It’s not the only reason why I did it, but it just was a benefit. And I’ve only gained weight this whole time or stayed stagnant, and I lost ten pounds. It was crazy. I’m like, what is happening? My body has been stuck for almost three years. Bloated just like, I lost my muscle tone. I was lifting a lot, I had defined arms, just lost muscle tone, lost tone in my legs. It was just weird. Everything that started happening, It felt like I was aging beyond what I’m supposed to.
Brianne: Like very quickly and unexpectedly.
Emily: Yeah. And not able to really name why or how or explain it. Even getting to a point sometimes where we’d be ready to go somewhere and my neck would just stop functioning like a normal neck and I couldn’t turn it past my shoulder and it would be in excruciating pain, just weird things. And doing this reset has just… I feel more like myself than I have I think in forever. It’s given me more clarity. Like, something simple for instance, this is a really good way to think about it, is if there’s a song on the radio, a year or two ago I could sing all the words to that song, but I could never tell you who sang it or the name of the song. Recently, things play and I just, I can pull it out of my head. And I’ve always assumed that my inability to recall names and places and things was because of my ADD, cause that has that as a symptom. But it wasn’t. I think it’s my foggy brain. I’ve been able to remember things more clearly, been able to participate in conversation and carry it on and follow it better. It made me realize just how much what I’ve been going through has been impacting my ability to think.
Brianne: Like how cloudy you’ve been, yeah.
Emily: Yeah. Just so foggy brain. I don’t really have another, a really great way to describe the way my head feels. It just didn’t feel right.
Brianne: Yeah. Well I think, I guess it’s probably not the same, but it’s even like when you’re a person who needs glasses, you just look at the world a lot and that’s what it is. And then you go and you get your eyes tested and they do that thing and you’re like, oh my God, that’s so much clearer. I didn’t know. I didn’t know I was foggy, but now I see that it could be different. Cognitive function is so hard when you’re still mostly living your regular life, but for whatever reason, if one day you wake up and you have more, you’re like, oh shit, why isn’t every day like this?
Emily: Right, no, I totally agree. I think that’s what’s made me realize that this didn’t start two and a half years ago. The symptoms got real bad two and a half years ago, but it made me realize I’ve never felt this clear and it makes me yearn for more clarity, if that makes sense. I don’t want to stop fighting. I want to feel the best I’ve ever felt in my whole life because I think it is possible. But what ended up happening at that time is that my knee did end up picking up right before that. And I went to my regular doctor because I couldn’t get into my naturopath yet, cause she’s booked out usually like months. So she’s like, ‘well, you know, it might be your meniscus, let’s do an x ray,’ which is hilarious because an x ray doesn’t even look at your meniscus. I’m not going to pay for that. And she wanted to put me on a steroid and whatnot, but the fact that I had this really bad rash all over my body, which I get every… I think I have it every winter and just thought it was dry skin. I get these little red bumps everywhere. She thought I had strep, and then when I tested negative, she was really concerned and I’m like, I never even thought this was anything. And I also had my dermatitis spread from my toes all the way up my ankle and leg, which we later found out was because I tried to switch my protein powder that I take every day, which is bone broth protein, which is amazing for healing your gut, for anyone who wants to try that. I switched it from chocolate to coffee, which was detrimental.
Brianne: It was not for you.
Emily: No, it was not a good choice. That’s the thing, it changes the way you live. You have to think so carefully about introducing anything new to your body, whether it’s a skincare routine, hair routine, food, like you gotta do it one thing at a time and really pay attention to how you feel. And I still struggle with that because it’s a whole different way and I’m impulsive, it’s just how I am. So I really have to be careful. I went to her for an ANA test, which I had done five years ago and it was cuspy. Well this time I came back way more positive, I guess, I don’t really know the right terminology for it, but enough to concern her to refer me to rheumatology.
Brianne: From a high ANA.
Emily: Yes. Which to me was upsetting to know that we could have caught this five years ago and started working on it. And the disservice that was done to me and the yearning to go back to any of those doctors and just make a statement, which I will never do, but it’s hard. Right?
Brianne: Yeah. I have a very strong opinion or idea, that there needs to be a feedback mechanism for doctors that like… I don’t know if it’s postcards, it probably isn’t postcards, but I want to start a nonprofit that will just give people fill in the blank postcards to send to old – this is the whole vision – to send to old doctors that’s like, ‘dear doctor whoever: You might not remember, but I saw you four years ago and you told me that I was depressed or that nothing was wrong and I want you to know that those symptoms have escalated and I have been diagnosed with x, or even like, this x treatment has been helpful for me. I understand that you didn’t know, but please keep this in mind for all future patients because that’s the part that really matters’.
Emily: Yes, right, and that’s why I’m on this podcast. If I can help one other person just by sharing my story and things that have worked for me, it’s worth it. I try to share it as much as I can, even though it is hard to tell it in a nice chronological order, but I’m trying. I think what you’re doing is so important because there are millions of people suffering. The fact is, is if you catch it early you can put it in remission, and once it shows up on a blood test or whatever test that they use to acknowledge it, it’s sometimes too late. I think that’s what depresses me and upsets me more than anything, is that it’s a disservice to every single person who suffers, because we all should be taken with a hundred percent knowing what our normal is and if it doesn’t feel normal to us, why is it a doctor’s choice to say, ‘oh no, it is, this is normal.’ Because we know our bodies and our minds and our spirits better than anybody else. I just wish it was taken a little bit more seriously. And I get there’s hypochondriacs and things like that out there, but I think the chances are that there are more people suffering with an autoimmune disease that’s going undiagnosed than a hypochondriac, personally, but I don’t know.
Brianne: Yeah, it’s complicated. I certainly, I understand that doctors don’t always have all the information. It’s also complicated on the other end, but at the end of the day, a little bit more empathy could go a long way for a lot of practitioners.
Emily: Oh for sure. But that positive ANA test for me crushed me, and it was really weird for me because this whole time if anyone asked I’m like, ‘oh, I’m pretty sure it’s autoimmune.’ My chiropractor told me it’s autoimmune. Anyone who suggested lyme is basically telling me it’s autoimmune, you know, all these things, thyroid – autoimmune. The fact we’re testing that shows that we’re leaning that way. For some reason getting that positive test, I just, I got it at school and it took all of me to get through the day and not cry because now I knew it’s forever.
Brianne: Yeah. You’re like, I’ve been working so hard and there’s still damage being done.
Emily: With the diet change and how much it improved my life, I think I started to think, maybe it is just candida and maybe I can beat this on my own through diet and through all of this, and I mean diet is always going to be critical for me because it’s not worth it. When I have the things outside of my diet, I feel like I go a year back.
Brianne: Yeah, and when you notice it so quickly…
Emily: So quickly. Within that 30 days I felt anew.
Brianne: So the positive ANA is after the reset?
Brianne: You’re deep into the diet, okay. That’s what I thought, just making sure.
Emily: Yeah, I’m in the middle of the diet when I have the ANA. And she tested… the other thing that she tested, so celiac, I’ve tested positive for that, but then my stomach, I’ve had a scopr for that and they’re like, ‘oh, it didn’t show anything.’
Brianne: So you had a positive blood test?
Emily: Yeah, positive blood test. It showed inflammation, but that doctor just said, ‘oh, you have IBS’. He’s horrible. He gives you like two minutes of his time and then sends you on your way. I wouldn’t recommend him to anyone, ever. I would love to send him a postcard, let’s get that going.
Brianne: From the postcard movement, it’s happening!
Emily: I will support that 100 percent. So what’s interesting is they redid the celiac test, but I’m pretty sure the celiac test is based on your B12 levels, right?
Brianne: I don’t actually know what the blood test is. I know that the blood test is not, like, gold standard.
Emily: Yeah, it’s not the best.
Brianne: Yeah, it’s complicated.
Emily: So I came back negative this time and I think it is somehow connected to B12, and I’m sure someone can correct me on that. I’ve been taking B12 supplements and I’ve been taking… calcium and all these things. And it was kind of incredible because she did these tests again that I’ve had done before and they all came back normal. Where in the past, you know, I have really bad nutrient deficiencies, which is another thing I struggle with. And those two had been back where I’m supposed to be. Those were huge wins in my eyes from this new naturopath, who’s been all about ‘how can we better nourish your body and get you these nutrients that you don’t have’. So that was good. But that test crushed me because I’m like, this is for life, I have a whole nother road ahead of me of figuring out this diagnosis and it’s really hard to be taken seriously. At 27, with these symptoms, I’m young, they just don’t care a lot of the time. So I go to my naturopath appointment and I tell her about my diet and she’s over the moon, she’s so excited. She’s like, this is fabulous, that this has been helping you, I want you to stick with it if it’s working. And then we go over my thyroid tests, which mind you, I had mailed to me ahead of time, so I had a regular doctor look at my thyroid test and they said it was unremarkable. I go to my naturopath. We have the thyroid tests and my adrenals together. I didn’t have my adrenals mailed to me ahead of time. And my T3 levels were really low. But my regular doctor said, ‘well, if you’re sick, they’re going to be low,’ and I’m like, I’m always sick, so how can we really… that doesn’t make sense. I was like okay, whatever. That’s the thing though, is that so often, every one comes up normal. Every single blood test I’ve ever had done has come back normal until this ANA or my food sensitivities of course. So she puts them side by side and I was like, ‘they’re unremarkable, right?’ Cause that’s what I’ve been told. She’s like, ‘maybe separately to a regular doctor. Together, they tell such an interesting story.’ And this was literally less than a month ago. She said, for instance – I’ll just give numbers, I don’t know if these are the real numbers – but on your thyroid levels, the same T3, one of them is really low and then my T3 free, if it’s a range from 14 to 25, I’m a 14. If it’s a range from one to five, I’m a 1.2, like I’m fairly normal. And then you look at my adrenals and it was like my curve was decent, in the normal. And she said she was even shocked that the lab put me in the normal range because it’s hovering right before, right above. Kind of that low range. And she said, ‘you’re barely where you need to be. And I already know that you have a nutrient deficiency, and the fact that your adrenals are struggling.’ And I particularly struggle towards the end of the day. Which she was surprised because most people would be midday, but I felt like it made sense. I really do feel myself crash more so around like five to eight, that area, which I guess is better because at least it’s near bedtime.
Brianne: Yeah, you get through the work day.
Emily: Right, but it makes sense, like I’m just getting through the work day, yeah. It also makes sense when I take a later class at the gym, you know, I do feel myself, I have to really focus on motivating and getting myself up and like, let’s go and do this. So she said with nutrient deficiency and with the adrenals being fatigued, especially because the cortisol and everything, she’s like, ‘it would make sense that your body is incapable of producing its own T3, which is why your T3 levels are really low.’ And the purpose of T3 is to increase energy, motivation, and metabolism, which makes a lot of sense because I’ve really struggled. And that 10 pounds that came off, I ended up eating off-diet, got really sick, it lasted for… It’s actually been lasting for almost two weeks cause it also changes my mood. It makes me more down, it’s crazy. The food has just been crazy.
Brianne: Yeah, now that you’ve become aware of it.
Emily: Yeah. It makes me feel more upset about things easily. I notice I get down about how I look and my appearance. I also have the bloating and water retention and my knee’s been bad because I ate outside the diet. So it makes sense with my metabolism because I’ve already put back on most of the weight I lost. And then thinking about the energy, my energy is up and down and the biggest thing that I’ve struggled with is my motivation. I’m a capricorn, I’m extremely driven, motivated. That’s just how we come by nature. And I always feel bad because our house is like a disaster. I feel like it’s my job to clean it and keep up with it, but I’m also chasing around 20 plus kids every day and trying to make sure I work out and trying to make sure that I’m eating correctly, and thank god for Kevin, who helps clean so much. He does the vacuuming, he does so many things just to support me and help me, and I’m very fortunate for that. But it kind of was like, okay. Because to me, I think I’m not doing enough, I’m lazy, I’m not motivated and I get down on myself. This kind of was like, well, there’s a reason behind that. That was really interesting to me because my family, obviously there’s a history of adrenal fatigue and hypothyroidism, and I don’t necessarily, like, I don’t have hypothyroidism, but I have an inability to create T3. So we looked at upping my Zinlori and taking two instead of one a day, so this will take months to see a change. And also taking selenium, cause zinc and selenium are what help your body turn T4 into T3. So I’m going the slow route, which is hard. We all want those quick fixes, but I do understand better now that everything is connected to the gut. And if I were to take whatever it is that the medical doctor would give me to increase my T3, I know it would do more damage than good on my stomach, which I’m trying so hard to heal, so one day maybe I can eat more normally, like others, that would be the dream. I’ve still kind of accepted that this is how it is, and even if I can never, you know, have a piece of chocolate cake or enjoy nachos with everybody, that it’s so worth it if it means that I’m going to be able to be there for the event, even if I have my own food. I’d be able to be present and to feel well. Cause when I don’t feel well, I don’t want to go be out in public or interact with people or hobble around with my knee. So that’s been really wonderful and that’s the most recent thing I found out. I brought my ANA test too and she looked at it and my naturopath matched my symptoms and my ANA test together and chose specific blood tests that align with my symptoms and the autoimmune realm. So I just had that blood draw this past Friday. And then I’ll meet with her a week before my rheumatologist to go over the results. And then I go see the rheumatologist at the end of April. And what my naturopath said is to already have all of these really important tests done to bring to her that match your symptoms, so hopefully you’ll get the most out of your visit. Because my naturopath said, ‘honestly, they might not take you seriously because of your age and the fact that some of your symptoms have improved.’ It’s kind of interesting, but it’s like, yeah, they’ve improved if I stay on this diet and the second I don’t, it’s back to square one. So that’s kind of where I’m at right now. But it’s been a crazy journey and I’m jealous of anyone who has an incredible team of doctors. I feel I’m still building mine. I have a wonderful chiropractor who is both for mental health and the body, he clears your bad energies and has helped my back immensely. I have Tina at the rapid recovery relief center who does these things with like laser treatments that have helped my chest pain…
Brianne: Like an infrared?
Emily: Yeah, an infrared for my knee. And she’s actually the one… I was having insane, what I call hip pain and my chiropractor tried a lot of things to ease that and help it, but she figured out it was my psoas, which is not a muscle that we talk about enough. And through stretches and actually just adjusting the way I sit near my steering wheel, it’s completely gone away. And that was a pain where I couldn’t even ride in the car for very long without needing to stretch or get out. So she was a great find, thank you to my Nana, shout out to her for finding her. And Dr. Jones is my naturopath now and Dr. Herring and they were just, both of them… I mean Dr. Herring finding my remedy and Dr. Jones helping me so much with figuring out my food sensitivities and not just looking at me as a number on a piece of paper and not ignoring something that comes back as normal but actually looking more deeply into… let’s look at these numbers. How normal really are they, how cuspy are you and how can we start treating the cause right now of not being able to make T3 so this doesn’t later lead to hypothyroidism. Because if you look at statistics, most women are diagnosed in their thirties and older, meaning a majority of people with hypothyroidism are women. And they say you should be tested at 40 no matter what. So catching it now, I am grateful for her because I feel if I had seen her sooner, with that ANA test from the beginning, you know? I feel what I’m up against now is the unknown of what my future is and not knowing what is this autoimmune disease and could it be something that is degenerative and only gets worse and detrimental to me? I think that scares me. And then working through that, because it’s still really new. I kind of found this podcast in the middle of me working on my mental health and doing the autoimmune reset. I found this podcast and listening to it, it’s scary. It’s eyeopening, but it’s also scary to hear what people go through. So I think that unknown is kind of what’s looming over my head, but I do feel like I’m on a pretty good path to hopefully figure it out.
Brianne: Yeah, it’s hard. It’s so hard. And I think one of the things that really strikes me…I’m also a capricorn and I don’t think about it that much, but when you were describing it, I was like, oh right, yeah, that is how I think about these things. It’s compartmentalized and also like I want to have a plan for all of it. And that’s something that I’ve been doing a lot less of for the last year. But when I first, for me, when I first was like, okay, maybe I have candida and that’s something that I need to tackle, I was all in on the diet and then as my energy got better, I was all in on my exercise plan and it was all of these things that absolutely did help and I absolutely ended up having other stuff going on. But I think something that’s hard, and talking about therapy is interesting, is when your body starts to like, not work the way you expect, of course you want to have control over it. And this is where those experiments come in, cause I’m like that too, of like, okay, what can I do and how can I track it and what can I follow? Who has instructions for dealing with this? And it’s like, part of it’s trial and error, which is the thing. As I’ve been talking to more people, you hear so many different stories about both. About people who have success with traditional medicine, people who have no success with traditional medicine, people who have success with naturopathic medicine, people who have no success with naturopathic medicine. And it’s like, god, what? What a mess. But you just have to pick a path and then try it and then adapt and then you find, you do you find stuff that helps. But it’s a process, right?
Emily: I do think it is about control though because when you feel your life is out of control, your body’s out of control, your mind’s out of control. I think that’s why we suffer in the autoimmune world because one, no one’s listening to us half the time, two, our body’s doing things that we don’t know how to stop it or to help it, and it feels like everything you try is making it worse. And you’re kind of wandering around in the dark, that’s how I felt at least. With the bloating like, what is it? I’m eating great things, but who knew sweet potatoes, bananas, random things that you would think wouldn’t impact you were killing me. How many things soy is in, that’s been crazy. But for me as a capricorn and I’ve just always struggled with control, I like to be in control. And I am an all-in person. So when I set my mind to something, that is what I’m doing. And it took me a while, with the candida, to accept the diet, and I really didn’t until I hit rock bottom. Because to me, I hear on here all the time, it’s like I have to already give up so much. I’m already giving up Friday nights out, I’m already giving up drinking, I’m already giving up sugar, I’m already giving up my ability to do lunges. Silly things that sound silly, but when normal everyday things that you see everyone else doing are stripped from you, those normal everyday things have so much more weight than you ever anticipated.
Brianne: Yeah, and they have a huge impact on your mental health. I do think therapy is important when it’s not somebody telling you that all your physical symptoms are in your head. But the working through grief, grief for all of the things, all of the little things that you thought you’d be able to do in your twenties or in your thirties that just don’t make sense.
Emily: Yeah. The therapy has helped me even recognize how much certain things have impacted me. Like, I don’t know. I think an autoimmune disease, knowing you have one, is terrifying. It’s like this looming dark cloud and you’re not sure when it’s gonna start raining or not on you because you don’t know when your flare ups are going to happen. You can’t always anticipate them. I feel more in control of them with this diet, but that doesn’t mean that I’ll always have control with this diet. I don’t know what I have and how it’s gonna play out, and I see how my mom has suffered, and I think I have that too. I listen to the stories on here and it, you know, there’s so many different ones and I think we all hope we don’t have the one that’s the worst. And part of me I think hoped it was just celiac because celiac sucks if that’s what you have. But when you compare it to other things, it’s like, hey, you know, that doesn’t sound so bad.
Brianne: Yeah, a lot of people manage it through diet.
Emily: Right. Exactly. So I’m glad that I know it’s autoimmune in the sense that I’m able to now hopefully better build my team, which has been happening slowly over these two and a half years. But I’m still like, oh gosh…and then knowing that I could get a diagnosis and then it could just not be the right one ten years down the road is kind of scary, too.
Brianne: Yeah. That’s an awful thing. An awful future.
Emily: And I hear that on here all the time. Someone’s like, ‘yup, thought had this for 10 years.’ It’s like, wow. Which is just crazy. But I am…. I do feel the most hopeful though, in my journey now, and I feel I have learned so much about autoimmune disease and about my body and it forced me to listen to it more because I’m a pusher. I’ve just been taught from a young age, you push through how you feel. My first year of teaching, I was so sick and I would just go to school and they would have to literally send me home or have someone drive me home. Where now, I take a lot of days and people make comments and I’m like, I put more weight and value on my mental health and my physical health than I do on my job. Because at the end of the day, I need to be able to be mentally and physically strong in order to be my best for the kids.
Brianne: Yeah, it has to be like that.
Emily: If I wake up and I know I can’t be my best for the kids, then I’m not gunna go into school. And if people are upset about that, then I’m sorry, I still write my sub plans, I still do my best everyday that I’m there, but I have to pull back and I’m fortunate that my administration has understood that and my coworkers.
Brianne: Yeah, and that’s been okay so far?
Emily: Yeah, I mean there have been times that, you know, maybe a coworker or someone says something and with the therapy I’ve gotten stronger at being able to say, ‘hey look, it’s not because I don’t care and it’s not because I don’t want to be here and stay after school til six or whatever and support this event. But I know for me that it’s going to wear me down.’ If I don’t get enough sleep, I just fall apart
Brianne: Me too.
Emily: And I know you get it, yeah. And it’s so important. I never valued sleep that much before. Like yeah, I get sleep, whatever and I’ll push through it. There’s no pushing through when it’s a bad day, it’s a bad flare up.
Brianne: Yeah. I think about it now, like even for me, when I was 25 and working, I would go to work hungover, I would go to work whatever… like I would stay out late all the time, I’d just do it. And now I’m like, I can barely walk if I put my body through what I used to put it through, it just doesn’t.
Emily: I can’t, yeah. And that’s how it started with me with the alcohol thing, is that I started getting such bad hangovers, that’s how I started getting so sick. And then one day it started where I don’t even feel anything. I just instantly get a hangover from just a sip, from even a sip of alcohol, I’ll get a really bad headache, the wrong kind. And those things… It is crazy to think back at what I used to do. But this has affected the majority of my twenties and it bites honestly, a lot of time. And I know why it’s sad that I attribute so much to age and like, oh, everyone does this. But it is hard when your friends want to go out and do stuff or… even if we have a weekend where we’re doing something on Friday night and then Saturday morning I’ve got something and another appointment and then Sunday… that’ll throw off my whole week. On a Monday, sometimes I’ll have school and then I want to go to the gym and then I’ll have therapy and then I’ll have dinner with my friends. And it’s like those are all fun and exciting great things. But to me it’s like, [gasp] ‘oh my god.’
Brianne: Why’d I do this to myself!
Emily: Right. My therapist doesn’t even get it. Sometimes she thinks of that as anxiety. I’m like, but no, I think I’m just becoming more aware of what my body can do in a day. With this great diet, I still have to be super aware of what is too much. And with my knee, my knee isn’t swelling with fluid as much, but it does still hurt sometimes. And yesterday, I wicked over did it at the gym and I have to just continually get better at listening to it and that’s hard for me because my head’s always thinking. So it’s like silencing your brain and just letting other parts of you be like, ‘Hey, we’ve had enough.’
Brianne: Yeah. And maybe you don’t always need to try for more. I’ve been thinking about that. I haven’t exercised in like a year and a half or two years probably because of everything, but we just joined a gym. I’m like, okay, I have to figure out how to get an exercise plan in place that isn’t going to – I’m like a numbers obsessed person –
Brianne: Yeah, so I know as soon as I… like one, I have had pretty bad POTS for the last two years, so like, crazy heart rate out of nowhere, so I really don’t want to push on that. Which is fine, I’m, ready to do that. But I’m like, I need to find a way to exercise where I’m not trying to increase my numbers all the time because I get…I can’t track food for the same reason. I can’t track carbs, I can’t track calories because I go super competitive with myself and lose sight of everything else. So I’m like, okay, I have to figure out how to exercise in a way that is good for my body and does not end in me eating myself, like self sacrificing in the name of better numbers.
Emily: I can agree with that. I used to try to track the food but I don’t anymore. I just eat within my diet and I don’t worry about how much I’m having. And it’s hard for me with the weight thing cause I did struggle with an eating disorder in college, which is why I think it’s still hard. I think this has been difficult for my family because it’s forced me to focus on food so much. And it’s a trigger. And I’ve done really well with it in the sense that I’m not like hyper obsessing and counting or anything like that. But it’s hard for me now with the thyroid stuff and gaining when I’m doing everything right in my eyes, like I’m exercising, I’m eating well, whatever. But it’s kind of been an interesting spot for my family and I’m grateful because they have been supportive and understanding and they do see, they’ve seen me suffer from eating the wrong thing. Going out to eat is awful, I try to avoid it as much as I can. And I’ve been grateful that I found a couple of places that really are awesome for me. But I think it’s also helped my family heal from kind of watching me go through that, because now they see me in a more resilient place where I’m using this because it’s helping me heal. Not because I’m trying to conform to this certain size or weight. So it’s been good in that sense. And it’s probably the first time in my life I’ve ever eaten enough vegetables and fruits, which isn’t a bad thing. And that’s great because my body doesn’t get enough nutrients. So with the supplements and with this diet, I’m hopeful that it’ll help with the nutrients, too.
Brianne: Yeah. And that’s like, I think that’s something that does get talked about, but it’s extremely… when you have a limited diet and a background of a complicated relationship with food. I mean now there’s more press around orthorexia which is in this realm of when you get hyper obsessed with good foods, bad foods, and then… but when you do have reactions, it’s like god, it’s its own landmine, I guess, is just all I want to agree with you about.
Emily: Right. And Kevin sees it, and that’s why I’m glad too that my fianc√© gets it, because we’re going to Florida and there’s nothing that I can eat that’s just on the go and easy. There are raw carrots, but I have to be really careful because they can make it difficult to make T3 I just found out recently, that a lot of raw types of things can… I can have kale, but it has to be cooked for instance and things like that. So I was like, all right, we’re going to Florida. I’m 30 days through this reset, I’ll just eat some grains, it’ll be fine because my naturopath said in the past I could have a half cup, you know? So we’re in the car going and I had some and I just, for the first time in 30 days went so far backwards. Got the headache, really bad headache, foggy brain, felt nauseous, just super sick, my stomach started to bloat. And I just started sobbing because I’m like, I’ve come so far. Why did I do this for this stupid little grain, you know? But that’s the thing, it takes so much thought to be prepared for the week, for me to eat, cause I have to have a smoothie every morning to help heal my gut and I have all these pills I’m supposed to take. I’ve been awful at taking my nightly medications and they’re awesome for me when I take them. They’re great supplements and I do take one that helps kill off the yeast called Nystatin and I’ve been forgetting each night to take it, so I set an alarm, but then what if I’m not having dinner at that time? It is a lot to remember and I’m not always perfect, but what I tell myself is, as long as I’m making an effort and I’m trying and I don’t limit myself, I eat as much as I want of the food in my realm. And I would say I probably eat way too many kale chips for a normal person. But to me, they saved my day. I think that’s been the hard part with the food though, is I’ll find something that’s really working great for me and then come to find out I can’t have it or it’s not great anymore, you know.
Brianne: Eating too much of anything will cause its own problem, basically.
Emily: Yes, exactly. I got myself a little coconut during this and it became my treat, my dessert. And then once I got back that blood test, it’s like, uhh, coconut’s not your friend. That’s part of why you’re bloating. I think that’s been difficult, but I think the pros outweigh the cons and that’s what keeps me going. Yeah, it stinks I’ve got to prep cook every week, it stinks I’ve gotta bring my own food. I made my own Thanksgiving meal this year. I think going to parties or hanging out with friends, everyone’s drinking and I’m not, I think that’s still hard because people ask me about it. And since we’re engaged, I get asked all the time if I’m pregnant and I also bloat. I’m like, no. Sometimes it’s very tempting to just put out a PSA about it because the amount I’ve been asked. That’s something that would have crushed me in the past, with the whole eating disorder, but now I feel like it’s comical. I bring seltzer, seltzer’s been amazing, that is my jam. I drink it all the time. And it helps me feel like I’m having a beverage with other people and I have a great group of friends who get it and they try to accommodate me. But it’s still not easy and I think that’s going to take time for me to figure out a way to feel comfortable around everybody else drinking and me not. And I totally think that’s a generational thing. I’m in my twenties and that’s why I feel that way. I think as I get older I won’t care as much, but I just, it was shocking for me to go from being able to drink when I want and I’ve never been a big drinker, but you know, every few weekends go out with friends to being stripped from that, even having the option, was hard.
Brianne: Yeah. When I first stopped drinking entirely, now I drink sometimes, but when I first stopped drinking entirely, I brought liquid stevia with me everywhere. Cause that was okay and it was just like lime seltzer, liquid Stevia, it’s almost like having a sprite, which is a small part of the way to what I really love, which is sour beer that I definitely can’t drink ever again. I would say, cause I first stopped drinking I think I was 28 and I’m 32 now. And even the difference of more people getting into their thirties, is people who don’t have health problems, their hangovers just get worse. Drinking does change, I am noticing, because I do drink socially sometimes now, sometimes for better or worse we’ll say, but it’s just gotten so much easier because so many other people have other stuff going on. And it’s silly because I also, it’s like I feel feel silly about it or would feel defensive about it. But you’re right. It’s just like being that age when you’ve lost so many things you just want to be able to do whatever.
Emily: Right, which is why I think a lot of people don’t stick to no gluten or no sugar or whatever because they’re like, I already had to give up so much. Giving up exercise or giving up, you know, going out with friends or staying out late or doing those things. Then it’s like, oh, here’s another thing I have to give up. I think for me, the symptoms far outweighed it. And with drinking, I think if I continue this diet that I should be able to do a little bit with Tito’s because it’s carb free, gluten free, everything free basically, and then a little bit of alcohol. But it’s definitely something that I need to only do after being very strict on my diet. My one goal is I want to be able to for my bachelorette and my wedding and if never again, that’s okay, I’m accepting that. Those are my goals and I’ve had to accept this is my body. It doesn’t feel like the body you’ve had, your body’s going to gain weight right now. That’s what it wants to do, and you have to just know that’s where it needs to be right now. And that’s something I’m still working on that therapy is definitely helping.
Brianne: And it’s your job to take care of it, that’s what you get to do.
Emily: And accepting this is my knee right now, it’s gonna blow up with fluid, you’re going to have to ice it regularly, it’s going to be super stiff, you’re not gonna be able to do what you want to do or go as hard as you want at the gym. And that’s okay. Sometimes you might have to sit at school and not walk around. Cause I’ve always prided myself on like, I’m always engaging with the kids. I’m always moving around the classroom. I’m not that teacher who just sits at their desk the whole time or like sits in a chair. I’ve had to just say, you know what, today, because of how you’re feeling or your knee or whatever, you’re going to have to sit.
Brianne: Yeah, and that’s okay.
Emily: Yeah. And it’s hard for me cause I just don’t slow down and it’s forced me to. Cause I associate slowing down with being lazy. And that’s another big thing that I’ve been really trying to retrain my brain, but I think it’s gonna take awhile. Just like this whole process has taken awhile, and remembering that it’s a journey.
Brianne: Somebody said to me recently, and now I forget who, but if you continue to listen to the podcast, you’ll find out who whenever it gets released, but somebody said to me, ‘it’s really hard to learn, but if you think about it, resting is actually the most productive thing that you can do. Because your body is doing stuff while you’re resting.’ I’m like, god, I want to write that everywhere. When you rest, you’re not doing nothing, like tattooed on my body.
Emily: Yeah, you’re helping your body. And that’s the thing, I’ve never been good at relaxing, which is why, you know, this whole time, and I’m sure you’ve been told to, everyone’s like ‘do yoga, it’ll change your life, It’ll cure you.’ I can’t do yoga. I talk a lot, as you can see from the podcast. My brain is always going and I’m not so great at relaxing. So for me that wasn’t helpful. But being able to just work on recognizing when my body needs a break or just trying to sit and close my eyes and like release certain tensions. Or even noticing if I’m at the gym and I’m doing something and it’s not feeling right, just stopping. Those small things are what I’ve been working on and maybe one day I can figure out a way to do yoga, but like I’ve tried it, I’ve tried months worth and then I take a break and I try it again and I just can’t. I love to dance and I love to do all that kind of stuff and now that I’ve been able to do it and do it as much as I want to has made me feel better. If the diet then makes me be able to go and kick butt at Zumba and go to cardio kickboxing and run or whatever, then it’s worth it to me. Those are the things that light my heart on fire and it’s made me realize that what lights my heart on fire is what I need to focus on being able to do, not what somebody else thinks I should be doing. Yoga’s not my thing and that’s okay. And normal’s not going to be my life.
Brianne: Yeah, it just is. Well, I think we’ve covered a lot of things. Is there anything else that’s been in your brain that hasn’t come up for some reason that you can think of? It’s okay if no.
Emily: I think the biggest thing that I want to reiterate on here for anyone who listens is that I really do hope in the future that we see a huge change with healthcare, because so many people are being disserviced by not being able to get the medications, treatment, and help that they deserve because their symptoms aren’t showing up on a blood test or an x ray or any type of tests. And I really hope that the future of our country focuses on helping everyone because no one should have to suffer the way that so many people do that not only are on this podcast, but in the world. And we live in such a wonderful place where this shouldn’t be an issue. So I really do hope that in the future that there is some positive change there. I also think that preventative care should be under insurance because I paid out of pocket for everything from my naturopathic services and that means sometimes paying 150 dollars on the spot or more. And luckily I’ve been able to figure it out, but no one needs the extra weight when they’re just trying to get through the day and hope that they get out of bed and hope that they can make it to work and hope that they can do the things that they need to do. So that’s the biggest thing that I want out there with this podcast, and that’s why I love what you’re doing because I do think it’s spreading awareness.
Brianne: Yeah, yeah, and thank you. But yeah, it is expensive. It’s expensive. And there are so many dead ends because it’s like… I want to say like the wild west, but I feel like that’s a bad comparison. But if you go to a naturopath or a functional medicine, you could, and your story illustrates this, you can go down so many dead ends that you’re paying for out of pocket. I do kind of think that’s a problem, but it’s like, when your main doctor that might be partially covered by insurance has zero suggestions for you, you either go home and wait for it to get worse or you try whatever you can. And sometimes that’s very expensive and ineffective.
Emily: Yeah, it’s also worse. I completely agree. And I think that is what happened for me is that with my doctor, she was like, ‘oh, I don’t really know what to do for you. You could go here, you could go there and could do all these blood tests,’ which I’ve ended up doing. But at the time, I was like, well, I don’t want to pay for all those. But at the same time, yes, I spent a lot of money on those tests, but I think it just reassured me because every time I went back to the naturopath, they were never like, ‘oh, we’ll just be trying that and see if it gets better’. She’s always like, ‘okay, this isn’t working. How can we adjust? How can he realign this to go this way?’ So I think that’s what’s always kept me going, is at least I’m never just left in the dark, but it has been a lot of money.
Brianne: And I’m doing it too, don’t get me wrong, 100%. I have an appointment with my naturopath tomorrow or Tuesday. So I’m doing it, too, it’s not that, it’s just the frustration with the process is really, it really resonates.
Emily: I hope that that improves for the future of America and the world.
Brianne: Absolutely. Okay. Well, thank you so much for talking to me and for sharing your story, and I hope you’re, you have a bunch of appointments coming up, so I hope that they are helpful and informative, which is the best outcome.
Thank you for listening to episode 31 of No End In Sight!
You can find Emily on instagram @emlayyyxo can find this show on instagram @no.end.in.sight.pod, and you can find me on both instagram and twitter @bennessb.
I’ve got so many more stories to share with you, so make sure you subscribe on apple podcasts or stitcher or wherever you get your podcasts. And if you’ve been enjoying the show, I would be so grateful if you could share a review on apple podcasts so that other people know what to expect.
As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. One of these days I’m going to get to work on some spring and summer patterns. I’d love it if you checked us out at digitalartisanal.com.