S2 E2 Mickey interviews Susan McCauley, who is recovering from ulcerative proctitis

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Welcome to The Autoimmune Wellness Podcast Season 2! We’ve created this podcast as a free resource to accompany our book, The Autoimmune Wellness Handbook: A DIY Guide to Living Well with Chronic Illness.

Season 2 Episode 2 is the first of our interview episodes this season! This week, Mickey sits down with her friend Susan McCauley to discuss Susan’s experience managing an unidentified autoimmune condition for many years. Susan was eventually diagnosed with ulcerative proctitis, but her healing approach has been all about addressing the root causes from the beginning.

Susan and Mickey dig into what it was like for Susan to finally receive a diagnosis, they myriad treatments and tests she underwent, low-dose naltrexone, stress management, and the importance of a support system. Scroll down for the full episode transcript.

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Full Transcript:

Mickey Trescott: Welcome to the Autoimmune Wellness podcast, a complimentary resource for those on the road to recovery. I’m Mickey Trescott, a nutritional therapy practitioner living well with autoimmune disease in Oregon. I’ve got both Hashimoto’s and Celiac disease.

Angie Alt: And I’m Angie Alt, a certified health coach and nutritional therapy consultant, also living well with autoimmune disease in Maryland. I have endometriosis, lichen sclerosis, and Celiac disease. After recovering our health by combining the best of conventional medicine with effective and natural dietary and lifestyle interventions, Mickey and I started blogging at www.Autimmune-Paleo.com, where our collective mission is seeking wellness and building community.

Mickey Trescott: This podcast is sponsored by The Autoimmune Wellness Handbook; our co-authored guide to living well with chronic illness. We saw the need for a comprehensive resource that goes beyond nutrition to connect savvy patients, just like you, to the resources they need to achieve vibrant health. Through the use of self assessments, checklists, handy guides and templates, you get to experience the joy of discovery; finding out which areas to prioritize on your healing journey. Pick up a copy wherever books are sold.

Angie Alt: A quick disclaimer: The content in this podcast is intended as general information only, and is not to be substituted for medical advice, diagnosis, or treatment. Onto the podcast!

1. Introducing our guest, Susan, and her autoimmune wellness story [3:19]
2. Officially a diagnosis [8:14]
3. Varying treatments and testing [18:07]
4. Low-dose naltrexone [24:24]
5. Stress management and sleep [28:31]
6. Having a support system [35:48]
7. Tips for the beginning of your autoimmune journey [40:21]

Mickey Trescott: Hey everyone! Welcome back to the Autoimmune Wellness podcast. We are in season 2 of the podcast. This is Mickey if you guys haven’t figured out the differences between Angie and mine voice yet. Today I am doing a personal interview with my friend Susan; hey Susan.

Susan: Hey Mickey! How’s it going?

Mickey Trescott: Awesome. Susan is one of my AIP and paleo BFFs. We met at PaleoFx; gosh, 3 years ago?

Susan: It was actually AHS.

Mickey Trescott: Oh! AHS, yep. So there we go.

Susan: And it was longer than that.

Mickey Trescott: Four!

Susan: I think it was 4 years ago.

Mickey Trescott: Yeah.

Susan: Yeah, 4 years ago.

Mickey Trescott: I was looking for a ride home from the airport, and Susan had a rental car, and she was also picking up Ben Greenfield, so I got to meet him. So Susan was one of my first paleo friends.

Susan: And Mickey was one of mine. And we had the same shoes on, and it was like; BFFs at first site.

Mickey Trescott: Yep! {laughs}

Susan: {laughs}

Mickey Trescott: Basically. We couldn’t not be friends.

Susan: Yes, exactly. It was meant to be.

Mickey Trescott: So I’m really excited to share a little bit of Susan’s story today because Susan is one of these people who hasn’t had a clear autoimmune diagnosis from the outset, but she has done a really great job at kind of tirelessly working out some of these root causes and kind of still working on some of that; we’ll talk about that. And I think she just has such a great attitude about the healing journey. She’s also a coach, so she has a lot of experience about this stuff. But Susan, thank you so much for being here; joining us from California. You ready to get started?

Susan: Sure; shoot. Go ahead.

1. Introducing our guest, Susan, and her autoimmune wellness story [3:19]

Mickey Trescott: Alright. So, I know that this question is a little bit more complicated for you; but tell me a little bit about your autoimmune disease, and what you first noticed when you first realized maybe that’s something you were struggling with.

Susan: Well, I first had symptoms a long time ago. I kind of am the example of what not to do, or how to go about everything backwards. I didn’t come to paleo because I was sick; I came to paleo because I wanted to lose weight, and because I had kind of developed a binge eating disorder from all the yo-yo dieting, so I was trying to change my relationship with food. But my first autoimmune symptoms; I have ulcerative proctitis, which is like the cousin of ulcerative colitis. It’s just less severe, and in the lower part; the distal part of the colon. I had symptoms as early as probably 10 years ago; which I don’t know how much TMI about symptoms is on your podcast {laughs}.

Mickey Trescott: Anything goes. We talk about poop all the time.

Susan: So basically, bleeding; rectal bleeding, bleeding when you have your bowel movements, and it started when I was doing the yo-yo dieting and the Weight Watchers; and paid attention to conventional wisdom on things like fiber. And I remember one time I ate four Fiber One bars; and I don’t know if you’ve ever had one of those, but they have like; I don’t know how much fiber in them, but they’re like a cookie, you know? And I had a binge eating problem. So one is delicious; four even more delicious. And that’s when the gut problems started.

I went to Kaiser, and they did a sigmoidoscopy; I think that’s what you call it, it’s been so long. And then they gave me some medication and told me not to eat too many vegetables; that was it. You know; it was basically, “take some medication; you have to take it, and you might have ulcerative colitis, right now we’re just going to call it undetermined.”

Mickey Trescott: And you got this diagnosis once you had been paleo for a little while, too, right?

Susan: I didn’t get the official diagnosis until much later. This was way before paleo, when I was doing the yo-yo dieting. I didn’t know it was autoimmune; it didn’t have a name. It said, you might have ulcerative colitis, but you’re too old to get ulcerative colitis. Most people get it in their 20s.

Mickey Trescott: Isn’t that funny how you need to be a picture of a disease when you walk into a doctor’s office; otherwise you get kind of thrown out, door slammed behind you?

Susan: Yeah. So they just gave me the suppositories and told me I had to take them every day, so I took them for a little bit and of course it worked. And then I kind of forgot about it; and it would come and go over the years. Enter paleo, and I think in a way, paleo prevented me from getting my diagnosis as soon as I probably would have gotten it if I would have kept eating the Standard American Diet. Because I took gluten out; and I had some other health issues, inflammatory issues, pain related, so I decided that I was not; even though when I ate gluten I didn’t immediately feel bad, but once I took it out, a lot of things got better including my UP symptoms. And so I would go for 3, 4, 5, 6 months without any symptoms; and then they would come, and then they would go.

But I was a bandwagon jumper in early paleo days; whatever the newest thing that came down the road; Susan was like, potato starch; if you have ulcerative proctitis, potato starch is probably one of the last things that you {laughs} should do. And of course I would be doubled over in pain.

Mickey Trescott: You didn’t jump on the AIP bandwagon back then, though.

Susan: I did though.

Mickey Trescott: Eventually. {laughs}

Susan: I didn’t jump on the bandwagon, but of course I was one of those people; and this is what I totally tried to make sure people understand about AIP now; AIP is not more perfect paleo.

Mickey Trescott: Amen, sister.

Susan: You know? So when I wasn’t losing weight, and I’m using my little air quotes, well I just needed to eat less foods. So I did do 30 days of AIP, but never the full Sarah Ballantyne AIP where you take out all seed spices. I took out the bases; the Robb Wolf, Whole30 AIP list, you know what I mean.

Mickey Trescott: Mm-hmm. Mm-hmm.

Susan: And I never planned my reintroductions correctly, because I always had; like, I did AIP 30 days before Thanksgiving. And then of course, you can’t just do one thing at a time, so I never really got the full impact of what I think AIP could have been for me. And I still didn’t have an AIP diagnosis.

2. Officially a diagnosis [8:14]

Mickey Trescott: Yeah, I was going to say, that was at a point where you still didn’t even really know that you had an autoimmune disease. Tell me about how you got the official diagnosis, and what that felt like when you made the connection that it was actually an autoimmune disease.

Susan: So, my chief symptoms, the reason I came to paleo; I talk about the binge eating disorder. I also suffer from severe fatigue. So my digestive symptoms always made it lower on the symptom list, whenever I talked to any kind of functional medicine person. So they were never really; and I think that’s my fault, and that’s part of the communication and collaboration; sometimes we don’t know that those symptoms are part of something bigger. And to me, losing weight was really important, and my fatigue was really important, so I was always trying to focus. That’s where that bandwagon jumping comes on. Adrenals, thyroid; what could it be? Going through all that whole list.

It wasn’t until, I think it was Mickey; it was Mickey. It was at AHS in Berkeley, which was how many years ago? 2014.

Mickey Trescott: Yeah, 2.5 years, yeah.

Susan: It was 2014, and that was right around when I decided that the pain was back, the blood; the bleeding was really quite severe. And I knew I was getting older, and I knew the implications. The colon isn’t a thing to mess with; when you’re pushing towards; I’m going to be 50 this year.

Mickey Trescott: Well and with some of those diseases, they take it away when it’s really inflamed. They remove it.

Susan: And Mickey said something to me; because she saw how many tomatoes I was actually eating back then, and she said; “Maybe you might want to think about cutting out nightshades.” And of all the things on the autoimmune protocol that I don’t want to give up; and sometimes it’s that thing that you don’t want to give up, is the thing that you need to give up; was nightshades, because I love Mexican food; I love tomatoes. We used to grow 3 tomato plants every year, my husband and I; and I would fill up big huge Tupperware full of cherry tomatoes and just eat on them all day. That was August 2014; and then I decided to talk to my doctor; my regular old, MD. And he referred me to a GI doctor who said I needed a colonoscopy. Because I thought I had SIBO, because that was the bandwagon I was jumping on then, you know what I mean? {laughs}

Mickey Trescott: Mm-hmm.

Susan: And he’s like; no, see that’s not where; even though, to me still, where he said I was bloated. To me still, that is still part of my small intestine, as well, so it could have been. So he did the colonoscopy, and then he said, “You don’t have cancer” which I think is what every doctor, after they do a colonoscopy, tells people. “Don’t worry, you don’t have cancer, but you have ulcerative proctitis.” And he was Indian, with a very heavy accent, and I said; I knew about ulcerative colitis, but I’d never heard of ulcerative proctitis, and I said, “Is that an autoimmune disease?” And he said yes; and then he said, “Here’s your prescription, you need to take this medicine every day for the rest of your life; and here’s a low-residue, low-fiber diet protocol.” And handed it to me.

Luckily; I had known Mickey {laughs}, and luckily all the places we’d gone to; all the seminars, and conventions, and conferences, is that I kind of, through Mickey, surrounded myself with AIP people. So I did cut the nightshades out, and I don’t eat a lot of nuts still to this day. I know that I don’t digest them well so I don’t really eat them often. I’ve learned, though; I just can’t eat anything every day. I can’t eat eggs every day; I can eat eggs occasionally. But the nightshades were the magic bullet, you know. And it was hard; and I didn’t eat a tomato for 2 years, and I didn’t eat a pepper or anything; and at home I still don’t.

But I did some more research; and I didn’t go back to that doctor because I didn’t understand the whole collaboration thing until Autoimmune Wellness Handbook, and I just thought I could do it on my own, you know.

Mickey Trescott: Well part of it; part of it is guiding that process. But I think, too, when you’re presented with only conventional options and no input from a doctor as far as, “Hey I’m trying this thing for myself, and it’s kind of working, can you keep monitoring?” A lot of doctors don’t really care to follow-up with a patient who is working like that, you know, so it’s hard.

Susan: Yeah.

Mickey Trescott: And I think too; Susan, you and I are pretty similar in the sense that we went off, and we studied nutrition, and we go to conferences, and we do a lot of reading; like, self-knowledge is really important to us, so it’s tempted to just be like, “I got this. I got this.” You know?

Susan: Yeah.

Mickey Trescott: And I do it too; still.

Susan: And I did, and the nightshades were huge, but I would still have periods; like I had a flare last, right before NTA conference last year. I had a really bad flare; and I don’t know if I had gotten glutened or what had happened. So when I had that flare, it was kind of a wakeup call that I needed to find a new GI doc, and I needed to find one that specialized in my autoimmune; that recognized autoimmune for what it was, and just, “Here’s a medication to take every day for the rest of your life.”

So my husband actually did the research, and found me a doc at Stanford, which I live in the Silicon Valley/San Francisco Bay area, so Stanford is like the gold standard. We had a great talk about my autoimmune disease. He said how far along; further along I was than any of his patients, because I had gotten the diet down. He recognized that certain foods weren’t good for people with ulcerative proctitis; although he also wanted me to get a flu shot and make sure to wear SPF 80 on my face.

Mickey Trescott: {laughs}

Susan: Because {laughs} people with autoimmune disease can get sick more often. {laughing}

Mickey Trescott: {laughs}

Susan: But he does have me on a regimen now, where we’re going to; he brought to my attention the fact that just because I don’t have symptoms, doesn’t mean that the tissue in my colon is healthy.

Mickey Trescott: Mm-hmm.

Susan: It’s a sign that it could be; but it still could not. It could be just that it’s not unhealthy enough to bleed, it could still be inflamed. So he said what we needed to do, is he has me on a regimen where I took my medication every day for 30 days; then it was every other day for 30 days; and now I’m on every; he didn’t recommend going to every 3 days, but I’m on every 3 days {laughs}.

Mickey Trescott: {laughs}

Susan: And I have to say that it’s been the time that it’s been, at the same time keeping my diet super clean; is that I’ve been, my digestion has probably been better than it ever has been. And I’m scheduled to go in for a colonoscopy; we haven’t met our deductible yet, so I’m kind of procrastinating at the moment. I know it’s going to take up the whole deductible, so we have some financial insecurity at the moment. To be able to see; now I know I’ve been asymptomatic for going on 4 months; what does that tissue look like under the microscope? And that is the true definition of remission. So that’s kind of where I’m at right now and working towards.

Mickey Trescott: Yeah, I think that’s good for a lot of people to hear, too. Because I think when they find something that’s kind of working for them; whether it’s a combination of medications and diet, maybe it’s just diet; it’s tempting to say, “Well the symptoms went away. This is great, I’m fine, I’m free.” A lot of times, there’s that really deep, that inside out; that kind of healing takes a lot longer, and sometimes it might take a combination of therapies. I think that’s helpful for people to hear; even someone like you, who is very into the real food nutrition; you live and breathe this stuff, but you’re still getting help from a conventional doctor and integrating that with what you’re learning and what you’re doing for yourself.

Susan: And the crazy thing is; the medication; so like I said we haven’t met our deductible yet this year, so I had to refill. Well, I’m supposed to refill the medication, and I still have some left, I’m not going to go without it. But without my deductible, 30 days of that medication is $950.

Mickey Trescott: Yeah.

Susan: And that’s just ridiculous; I can’t imagine how people do it, that don’t have the diet locked in, that are able to go to every 3 days, and to make that $900 stretch for 3 months, or 4 months instead of having to reup every 30 days. And you know; in all honesty, and this might be too TMI. Putting a suppository in every night is not fun. {laughs}

Mickey Trescott: {laughs} Yeah. I mean, a lot of, from a lot of angles, we would save our entire healthcare system so much money if people got the prevention part and kind of were taking the things that they could do more seriously, and not needing to take so much medication. I mean, a lot of people think of the side effects and the long-term stuff that comes along with taking medication, but the toll that it takes on your finances, and your health insurance plan, is totally another angle of it; depending that people live in the US, you know how tricky it is right now with healthcare for us.

Susan: Right.

3. Varying treatments and testing [18:07]

Mickey Trescott: So, talk to me a little bit about some of the other things that you’ve trouble shooted along the way. Is there anything that you’ve done, or any kind of treatments; it doesn’t have to be completely related to the autoimmune thing, but what kind of deeper testing have you done to kind of get to the root of different things.

Susan: Well, most recently it was a year ago; actually more than a year ago, it was in August 2015. I’m sorry, no, January 2016; so just over a year ago, I started seeing Dr. Amy Net, who is part of Chris Kresser’s practice, about my fatigue. Because my fatigue in all reality, it ebbs and flows, but for the last couple of years it’s been pretty down. I’ve had a lot of stress; which we can talk about lifestyle and stress management later, but I was just continually seeking the, “Is my fatigue something that there’s a deeper root cause?” And we didn’t mention this, but in my past life, I’m actually in recovery from drugs and alcohol. So over almost 20 years ago, I did a lot of methamphetamine. And I’m not sure if that has a possibility; because I stayed awake for a lot of days in a row at some point.

Mickey Trescott: So you’re paying for it now maybe.

Susan: Am I paying for it; you know, I don’t know? What does that do to your brain? I don’t think anybody really knows. But is that a possibility? Is that something at some point I’m just going to say; Ok, I’m just going to live with kind of being sluggish and fatigued a lot of the time?

So I went to Dr. Net as my last-ditch effort. I’m going to go, and I’m going to have her go through everything, and see if there’s anything. Because I know autoimmune, fatigue is part of the symptoms of autoimmune. Even though I’m not having GI symptoms; fatigue and taking care of that part of yourself is super important; and she ran some tests for chronic inflammatory response syndrome; CIRS; and I tested off the charts. Which is a biotoxin illness, usually predicated by some kind of mold or mold exposure, which could have been at any time in my life. I live in a new house; it’s only 8 years old. It’s not my house. I’ve had my house tested; which was a big chunk of change, if anybody has to do that.

And I went on the beginning of the protocol; and so far, it just seems like my numbers haven’t gone done. We’re still trying to peel back that onion. I leave the rabbit-holing now to my doctor, because I get too wrapped up in things, and I have to kind of step back. So yes, there are some genetic markers that they test you for, and I have been negative for all of those. So it’s one of those things that I was probably just exposed; but it’s kind of the better of the two. You can have been exposed, and your exposure was such that you are sick; but you aren’t exposed as such that every little thing is going to make you sick moving forward. Which a lot of people with CIRS; it does happen. They go to a hotel, and there might be a little bit of mold, and they end up really sick.

Mickey Trescott: Mm-hmm. What I think is most interesting is that a lot of these people, just removing themselves from the situation, or the space, it doesn’t go away. Sometimes they can have it for decades until they actually treat that underlying root cause, and kind of get their inflammation down and get them healthy again, which I find fascinating.

Susan: Yeah. I even had a brain MRI to look; because it does affect your brain, and I do have this, what they call atrophy, which is really scary. Your brain has some atrophy. So the next step is something called VIP spray; and I haven’t started that because it can affect smooth muscle tissue; which it can affect your pancreas, and my fasting lipase has been high, and I can’t take it while that’s high, so we’re trying to figure out what that’s high. Because I don’t do drugs, and I don’t have any kind of pain, so the next step is either to get my pancreas ultrasound; or Dr. Net digging; Dr. Schumacher is the pioneer all this stuff; digging in deep with him to kind of see if he has anybody else that has chronic, elevated fasting lipase.

Mickey Trescott: It’s so interesting; what is your feeling working with someone who, Dr. Net is kind of at the cutting edge of this stuff. Do you feel like that is reducing your tendency to figure that out for yourself online?

Susan: Yes.

Mickey Trescott: Just kind of set back and let her guide it.

Susan: Let her drive.

Mickey Trescott: How does that feel?

Susan: it feels good. In recent; I think over the last year, I’ve had to really take stock that I have to stay; I can’t listen to every paleo and real food and nutritional and medical podcast out there. I can’t read every book that’s there. That kind of contributes to my stress, and I really had to find somebody able to drive to cart for me, and that’s Dr. Net. She; it’s kind of relaxing, you know. She makes the decisions, and I start Googling stuff and it’s like; “Susan, you have an appointment in 3 weeks with Dr. Net.” I had a thing on my brain MRI that said I had white lesions, and I started Googling that; and I’m like, you know what, you need to stop. And you know what; we haven’t even brought it up. Because obviously, she’s a radiologist; she saw my MRI. If she thought it was something to be concerned about, she would have brought it up with me.

Mickey Trescott: Mm-hmm.

Susan: So, I really had to step back, and like I said, let her drive and let her make the decisions and just recently, less than 2 weeks ago, we started on LDN, for my ulcerative proctitis, and I also have some chronic pain.

4. Low-dose naltrexone [24:24]

Mickey Trescott: Yeah; so I don’t think we talked about LDN at all yet on the podcast; do you want to give people a little overview of what it is and how it works; just really, really simply.

Susan: So LDN; I’ll do it simply because I might not have all the techy information.

Mickey Trescott: Oh you’re so smart, Susan.

Susan: {laughs} It’s low-dose naltrexone, and naltrexone is a drug; and I might get it wrong, is it, it’s an opiate agonist. So what that means in layman’s terms is that it helps your endorphins and it helps your own immune system kind of calm things down. And when you have autoimmune, we know that your immune system is upregulated, and it’s sensitive. And we want to kind of calm things down. It works with dopamine, it works with your endorphins. To do that; it’s a very inexpensive drug. Even compounded, 3 months is $80, so that’s a pretty good deal. The drug has been around for a really long time for drug and alcohol treatment, so people take that because if they take that and then they take opiate medication, it doesn’t do anything for them. So naltrexone itself has been around for a really time.

Mickey Trescott: Yeah, and it’s had quite a buzz, I think, in the community just because people’s experiences vary; some people have almost miraculous results using it, and some people don’t notice any changes. But it really doesn’t have any side effects, and what’s been your experience transitioning to it? I’ll be there are some people that are curious.

Susan: There are side effects. And the side effects are sleep related. So you have to be very vigilant, which brings to the whole lifestyle factor. Sleep is my number one, on my list of priorities; above food. Above food. Sleep is my number one priority, so my sleep is dialed in, which is good. So if your sleep wasn’t dialed in; what happens is, you take the medication before you go to bed, and you start at a small dose. You start at 1.5 mg for 30 days, then you go to 3, then to 4.5, which is the actual dose. Dr. Net says sometimes you can be at 3, and a lot of patients feel good just right there. They don’t feel any different between 4.5 and 3, so they back down to 3.

So what happens is you take it before you go to bed, and you go to sleep fine, but it could wake up around 3 or 4 o’clock, and it has to do with the endorphins and the dopamine, and how it works in different people’s bodies.

Mickey Trescott: Some people have dreams; have you been having dreams.

Susan: Yeah, I have dreams. I’m a crazy dreamer to begin with. I sat this morning; my husband came back up when I was getting up and crawled into bed, and I started telling him all my crazy dreams. He’s like, “Wow! You have really crazy dreams!” {laughs}

Mickey Trescott: {laughs}

Susan: But I’ve always been that way. But it does wake you up, and you have kind of vivid dreams. And then it makes it kind of hard to go back to sleep, because it’s kind of woken you up. But it doesn’t last. The first day was fine; and then days 2 through 8 kind of sucked, but now it seems to have rectified itself.

Mickey Trescott: Ok.

Susan: But I haven’t noticed any difference. Usually takes weeks or months.

Mickey Trescott: Mm-hmm; yeah, I’ve usually heard with people that I’ve worked with at least a month, maybe the 6-week mark is when they start to notice some changes, and they can be subtle at first.

Susan: Yeah. And I want to be on it for a significant amount of time before I get my colonoscopy, so then it’s kind of in there with maybe my regimen is the LDN and maybe taking the Canasa, which is the name of the medication, once or twice a week. Who knows.

Mickey Trescott: Yeah. Hack all the things to make a blend; that’s what we teach here. A blend of the best of conventional; the best of natural, the best of the things you could do for yourself to kind of figure out what works for you. I love that.

Susan: Mm-hmm; definitely.

5. Stress management and sleep [28:31]

Mickey Trescott: So, you’ve alluded a little bit to the stress management piece and sleep. Talk a little bit about some of your routines around stress management and sleep; because podcast listeners have heard a lot about diet, and a lot of things they can do to transition to the diet. But I think consistently, once people change their diets, this is where they have the hardest time. So I’m interested in hearing your biggest tips and things that really work for you.

Susan: So; sleep is like my thing. I had a horrible sleep regimen before, and I didn’t even know. I didn’t understand; I thought you went to bed; it’s because I’m older, so people are going to go; “Oh my god, she is really old.” I thought you went to bed after Jay Leno was on. It was like Jay Leno…

Mickey Trescott: You want to hear something sad? I don’t know when Jay Leno is on.

Susan: {laughs}

Mickey Trescott: {laughs}

Susan: I know, and I used to fall asleep to the TV every night. You’d put on Jay Leno, or whatever, and then later on.

Mickey Trescott: Was that like midnight?

Susan: It’s like 11:30; I think he’s on after the 11 o’clock news. I don’t even watch; I don’t know what we did before DVRs and the internet TV-wise, because I can’t watch those shows that are very intense at 10 o’clock at night, which is the time the good ones are on.

So when we first started eating paleo and reading about sleep, this was our sleep regimen. We watched TV in bed until we fell asleep and set the time; and then I got up to an alarm, hitting the snooze probably 7-8 times, and was always sleepy. And then we instituted little things a little bit at a time.

The first thing was a bedtime. You figure out your bedtime by what time you need to get up; you figure out what time you need to get up, and you subtract 8 hours, and that’s what time you need to go to bed; not when Jay Leno is over, or Jimmy Fallon, or Steven Colbert. You pick your bedtime; if you have to get up at 6, your bedtime is 10 o’clock; or sometimes people need a little bit more. But 8 hours is a good start. So we started with bedtime.

Oh, first of all we stopped watching TV in bed. Which was funny because my husband {laughs} thought that he needed the TV to fall asleep, because he suffered from insomnia before he met me, he had a big battle with insomnia. And he goes, “But it really helps me fall asleep.” And I said, can we just try it for one week? And I encourage people, if they’re dealing with a significant other, just ask them to try something for a week. Then there’s no skin in the game; it’s a week. You can do anything for a week, right. So we stopped the TV for a week; that was our plan, and 3 days into it we woke up, and he goes, “I hate it when they’re right about stuff like this.” {laughs}

Mickey Trescott: {laughs}

Susan: He goes, “I have never slept better in my life.” So the TV has been off since then. Of course when we’re sick, or on the weekend or something. But, during the week, no TV in bed. Bedtime, then I got the orange goggles; and they really work people. If you haven’t tried the orange goggles, they are; I can say, “I think I’m not going to be able to go to sleep tonight” and right after dinner I put my orange goggles on, and sure enough it starts making my drowsy. My cousin calls them the sleeping pill of eyewear. I even have, now that I have readers, I have tinted readers that I use to read in bed at night.

Mickey Trescott: I need to get a pair of those.

Susan: Yeah, they’re pretty awesome. Readers.com has a couple of different tinted lenses, and they’re pretty cheap. So the orange goggles; as soon as dinner is over, all the lights go down in our house. We have dimmers. The kitchen lights go off, dimmers; no electronics or anything an hour before that bedtime. So I have an old-school back-lit kindle that I read in bed, and I never get to that 10 o’clock, really. I start to read an hour before bed, and 9:30 comes, and I’m usually ready to turn the light out. Turn the Kindle light out and go to bed. We have an orange-amber lightbulb in my nightstand, so that’s the light that’s in the bedroom at night.

And then I wake up with a vibrating alarm. I still use an alarm; I’ve gone a year without one, but now I have to get up so early to battle the traffic of the Silicon Valley that I have to set an alarm. But I using a vibrating Fitbit alarm instead of that big loud iPhone alarm, and I think that really helps. I don’t snooze an alarm ever; it goes off, I get up.

Mickey Trescott: Yeah, we put our alarms in the other room so we have to get up to turn it off.

Susan: Yeah. And all my electronics are out of the bedroom. We still have a TV in the bedroom, but it’s not on. But my phone, my iPad, everything is nowhere near my bed so I have no reason to look at in the middle of the night. And then we’ve taped over every single light; even our, what is it, smoke alarm, has a little blinking light. Everything has a light these days. So we’ve got black tape over everything; we have blackout curtains. I keep earplugs next to my bed, because I have cats that like to scratch and purr and yowl in the middle of the night; and I sleep with something over my eyes, whether it’s a soft T-shirt or an eye mask; those kinds of things. And when I travel, earplugs and eye mask.

Mickey Trescott: Mm-hmm.

Susan: Always come with me.

Mickey Trescott: Yep. I love that. Great tips. You’ve got all the tools in the toolbox. But when you know that sleep is the most important thing. Like you said, for you, it’s even more important than food; a lot of people might be listening and be like; “wow, that’s a lot of routine for the sleep.” But it’s like being that organized, and meal planning, and batch cooking for the food. You just have to set yourself up for success, and be ready.

Susan: And once you get used to it, I just do it. Like the glasses; they’re on the kitchen table. So we finish dinner; I do the cooking and he does the cleaning; and so I grab the glasses. 9 o’clock, we watch a couple of shows at night; at 9 o’clock or before the TV goes off. And we go upstairs.

Mickey Trescott: Yeah, when it’s a routine and you do it together, it doesn’t seem that weird.

Susan: Yeah. And it doesn’t seem hard, because we’ve been doing it. And it helps us. I know when I get less than 7.5 hours of sleep, first of all it’s hard for me to eat correctly because I crave all kinds of carbs and fat together, and my body does not run well on both carbs and fat together in huge amounts. But your body is looking for energy, and those are the biggest; the sources of energy. And I just feel horrible; I’m foggy headed, besides being a nutrition coach, I’m also an accountant and I have to look at detailed numbers and be very on, and fuzzy headed and accounting does not work. And it gets my clients mad at me, and I don’t like that.

6. Having a support system [35:48]

Mickey Trescott: Yeah; totally. Well, talk to me a little bit about support. Have you had any stand out supporters; anyone who’s kind of cheer-leaded you through all the phases of your journey?

Susan: Well I’ve had you, Mickey. {laughs}

Mickey Trescott: Oh my gosh, you can’t see me, that doesn’t work.

Susan: Well you helped because of the whole nightshade thing.

Mickey Trescott: Yeah, we support each other.

Susan: Yeah. It’s so crazy; I think about going to the conferences, and I don’t drink; sometimes that’s the only; it’s not hard for me because I’ve been not drinking for a really long time, and I don’t need to change the way I feel to have fun or be happy; but when I hang around the AIP people they’re not really big drinkers either.

Mickey Trescott: {laughs} Well, if they’re on the elimination diet, they’re not drinkers {laughs}.

Susan: Exactly.

Mickey Trescott: They shouldn’t be.

Susan: So we’ve had an Air BNB where other paleo people have come over to our house and said our garbage looks a lot different than their garbage {laughs}.

Mickey Trescott: Oh my gosh. {laughs}

Susan: Because they’re on conference, they’re having a good time.

Mickey Trescott: Our garbage has like kombucha and Hail Mary’s.

Susan: Yeah, kombucha and sauerkraut.

Mickey Trescott: And sauerkraut.

Susan: But my husband has been; you know, ever since forever, since I’ve known him. Which I’ve only known him 9 years; but through my whole journey, through the binge eating. He’s the one that found Whole30; that’s how I started paleo. I couldn’t control what I was eating any longer. I was doing Weight Watchers; I was doing CrossFit and Weight Watchers at the same time. I advise you to never try anything like that; severely undereating and doing crazy exercise do not go well together; there’s never a good end to that.

But he’s the one; and when I said at the time, this is funny. He was drinking; literally, not figuratively, literally a 12-pack of diet coke a day.

Mickey Trescott: Is anyone ringing the bell with the insomnia? {laughs}

Susan: I know! When I first met him, and when he first moved in with me I didn’t realize how much diet coke he was drinking. And then I realized he was drinking it up until he went to bed. And I said, “Did you ever think to maybe not drink diet coke after lunch, and see if it helped?” And it really helped him a lot. He doesn’t have insomnia anymore, but yeah; the ding-ding-ding. And then I said; “Well you can’t drink diet coke on Whole30.” And he said, “I can do anything for 30 days.” And you know what; he doesn’t drink diet coke today. He doesn’t. And it’s just not a part of; it’s not a treat for him, it’s not anything for him. And he actually used to have; not a tic, but he would stop on words sometimes. He would hiccup through words, and that went down like 99%.

But he’s just cheered me on through the whole thing. Every time I need to make a change for my health, he is right there willing to do it with me. He never says, “Make me something else to eat.” You know, he’s not that kind of husband that wants his pizza and beer, at least once a week. He’s never somebody who says, “I can’t.” I know, my dad used to do this when I was growing up. He would come home from work, and he would say, “What’s for dinner?” And my mom would say, “Spaghetti.” And he would say, “I had Italian for lunch.” You know?

Mickey Trescott: My dad did the same thing. “I had that for lunch.”

Susan: Yeah. He’ll eat whatever is in the house, and he’s always been there, driving me to doctor’s appointments. Letting me spend money on autoimmune disease; and natural medicine and functional medicine is not cheap. And he’s never complained; said, no, you can’t go to that doctor, no you can’t have that test. And he’s held my hand when I wanted to give up. You know, Christmas this year; December was hard. My fatigue was really bad, and I just sometimes feel like giving up. And he’s like, “No you can’t, what does that mean, giving up?” You know?

Mickey Trescott: Yeah, it’s really; it’s been really sweet to watch you two, and I think that he has supported you a lot because he sees the change in you and he sees how much happier it is to be married to someone I think is feeling their best, you know, and kind of following their path and their dreams and discovering things together. You both have a lot of joy in kind of learning new things, and that tweaking; and that attitude isn’t everyone’s, but I’ve definitely noticed it in you guys, and I think it’s really great.

Susan: Yeah.

7. Tips for the beginning of your autoimmune journey [40:21]

Mickey Trescott: So, just to wrap up, do you have any tips or takeaways for anyone who is just kind of at the beginning of their autoimmune journey?

Susan: I say get a good functional medicine provider. And I know in your book you go over all the steps to find and to work. And you do need a really good doctor; and you need to listen to what that medical doctor says, but you also need to realize what frame of mind they’re working in. My first doctor, “here, just take this medicine for the rest of your life.” You’re going to get those medical doctors; and if you do get that kind of doctor, you need to find another doctor. Because, except for things like thyroid where you need to take medicine, and insulin when people need insulin; there’s not a lot of diseases where you just take medicine for the rest of your life and that’s the only thing you do.

Mickey Trescott: Mm-hmm.

Susan: It just doesn’t work that way. And the other thing is; try to stay away from Dr. Google. Really try to stay away. I’ve got the whole methylation stuff, and the whole gene variance, and falling down that rabbit hole of thinking I’m going to find some magic answer somewhere.

Mickey Trescott: Would you say, Susan; this has been my experience as kind of an ex-Dr. Google addict. I find that the solutions to my problems are actually quite simple and mostly kind of in plain sight, and a lot of them haven’t come as a result of following some rabbit trail online.

Susan: Exactly. It all boils down to sleep, real food, finding out what foods work for you and what don’t; and in reality, coming up with the broadest diet possible, because for me especially with the history of binge eating; the feeling of restriction is not good for my brain. So I need to feel; when I can eat white rice and white potatoes, I need to eat those things. Not every day; never every day. I don’t eat anything every day except drink water. Oh, coffee I do drink every day; which is on my list. But yeah, finding that broadest diet possible, and finding out what foods hurt you. Just eat foods that don’t hurt you.

Mickey Trescott: And then what quantities, I think you telling your story a little bit about how those reintroductions have gone for you, and how you’ve noticed this threshold; that’s something that’s a really common theme for people. They like to think of everything in terms of black and white, and I think the more we get into this we realize that’s kind of not how it is, you know?

Susan: Yeah. And you know, for me, keeping my house pretty much; except for eggs, white potatoes, and rice; keeping my house pretty much nightshade free. I don’t eat nightshades at home; I save that for the occasional time we go out. I ate fresh tomatoes for the first time after 2 years this summer, and I just eat a couple at a time. I don’t eat; my husband gets a little thing from the farmer’s market, and I probably put 3 cherry tomatoes on my salad, or three bites of a chopped-up tomato. And I savor it. And you know what, people say, “I’d die if I couldn’t eat tomatoes!” Well, I didn’t eat tomatoes for 2 years, and I’m still standing. Because I felt like I’d die without tomatoes, but you start to appreciate things more.

Mickey Trescott: Mm-hmm.

Susan: When you don’t eat them every day, and it just works. But yeah, get the food dialed in, step out of that rabbit hole. Like I said, there isn’t some magic formula out there. They may be able to do it; but take all your genes, and lab work, and come up for the magic pill for you. It just isn’t out there, I don’t think.

Mickey Trescott: Yeah, people have got to find it for themselves.

Susan: Yeah.

Mickey Trescott: Well thank you so much, Susan. This was an awesome interview. I think people are really going to enjoy hearing about your experiences and hearing you tell your story. If people want to keep up with you, do you want to tell them a little bit about how they can get in touch with you, where they can find you?

Susan: Sure. I have a website; it’s www.EvolveNutrition.com, and also on Facebook. I have been kind of in a life transition right now, where we’re going to the simplify route. So I’m working an accounting job right now because we’re about to sell our house and move. So I haven’t really been keeping up with that, but you can still contact me through that.

Mickey Trescott: You have such great; she has really great articles, especially for anyone that struggles with sugar addiction or drug and alcohol addiction. She has a great podcast series, Evolved Recovery Podcast; is that what it’s called?

Susan: Yeah, the Evolved Recovery. And I have also a website called. www.EvolvedRecovery.com. And a podcast. But you can all get there through Evolved Nutrition; the links are all there.

Mickey Trescott: Yeah, it’s a great resource. Awesome. Well thank you guys so much for listening. We’ll be back next time with a question and answer episode, so I’ll have my buddy Angie back. And we will be answering your questions. You guys take care; see you next time. Bye guys.

Susan: Thanks; bye-bye.

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About Angie Alt

Angie Alt is a co-founder here at Autoimmune Wellness. She helps others take charge of their health the same way she took charge of her own after suffering with celiac disease, endometriosis, and lichen sclerosis; one nutritious step at a time. Her special focus is on mixing “data with soul” by looking at the honest heart of the autoimmune journey (which sometimes includes curse words). She is a Certified Health Coach through the Institute for Integrative Nutrition, Nutritional Therapy Consultant through The Nutritional Therapy Association and author of The Alternative Autoimmune Cookbook: Eating for All Phases of the Paleo Autoimmune Protocol and The Autoimmune Wellness Handbook. You can also find her on Instagram.


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