S2 E4 Angie interviews Stacy Smith, who is recovering from a suspected autoimmune condition

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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 4 is all about how to start the work and begin healing, even without a diagnosis. It’s our second interview episode of the season and in it, Angie sits down with her friend Stacy Smith to discuss how Stacy has managed an unidentified autoimmune condition for nearly 20 years.

Angie and Stacy dig into how Stacy came to terms with her condition, how she went from vegan fitness competitor to AIPer, how to find your “best fit” doctor, steps toward self-empowerment, and much more. 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!

Topics:
1. Stacy’s diagnosis story [2:35]
2. Coming to terms with the diagnosis [7:30]
3. Support of friends and family [10:38]
4. First discovering it’s autoimmune [12:34]
5. Finding your best fit doctor [15:58]
6. First steps towards self-empowerment [21:36]
7. Greatest dietary and lifestyle impact of AIP [27:52]
8. Lowest and highest points of Stacy’s journey [34:50]
9. Stacy’s present health situation [37:29]
10. Tips for beginning the journey [41:29]

Angie Alt: Hi everyone! Welcome back to Autoimmune Wellness podcast season 2. This is Angie, and today I’m interviewing Stacy Smith of Viridis Wellness, LLC. She is a fellow nutritional therapy consultant, and an Instagrammer extraordinaire. If you are not following her at Viridis Wellness on Instagram; you should definitely pop in there. She shares beautiful, very informative posts on the daily. She’s a much better Instagrammer than I am.

We have gotten a lot of feedback that you guys find it helpful to hear from folks who have taken on the healing journey in real life. So today, we’re going to be sharing a little bit of Stacy’s story. Thank you, Stacy, for joining us from the Midwest. Are you ready to get started?

Stacy Smith: I am. Hey Angie, how’s it going to day?

Angie Alt: It is going pretty good. There’s always way too much to do in life.

Stacy Smith: So true.

Angie Alt: But I am managing it somehow. {laughs}

Stacy Smith: So true.

1. Stacy’s diagnosis story [2:35]

Angie Alt: So, let’s just jump right in. I think it’s always good for folks to kind of tell their diagnosis story, and to kind of share what that part of the journey was like. One of our first questions that we always ask people is, what was the first symptom you noticed of your autoimmune disease? What was the first thing that popped up that made you go; “Hmm. I better investigate this?”

Stacy Smith: Something’s not right?

Angie Alt: Yeah.

Stacy Smith: Yeah. In my case, that would be harkening all the way back to 1998, when I moved to the Midwest from California. My first symptom was definitely severe fatigue, and that’s the one that I’m still working on today, many years later.

Angie Alt: Ok. Ok. Yeah, there should be a total different word to describe fatigue when it’s autoimmune fatigue. It’s on a whole other level.

Stacy Smith: Absolutely. So that should be the word that we make up this year.

Angie Alt: Right. {laughs}

Stacy Smith: {laughs}

Angie Alt: The word of 2017.

Stacy Smith: That’s right. That’s right. So yes; I went from being very healthy, very active at age 20, to completely debilitated, couldn’t get out of bed, and that was definitely tough at the time.

Angie Alt: Yeah. Ok. How long did it take, from noticing that first system, that really extreme fatigue, until you got an actual diagnosis?

Stacy Smith: You know, I still don’t have a diagnosis to this day. So I would say that that level of fatigue waxed and waned between 1998 and 2013. I would call that my silent autoimmunity period, which was quite long. And in 2013, I had this constellation of events happen in my life all at the same time. I switched jobs, I was working 80 hours a week at a very fast paced finance firm. I had someone in my family with whom I was close pass away. I had some issues in my relationship. I was training to compete in fitness; so I would say I really kind of pulled the trigger on the autoimmunity at that time; became very ill. I saw three different rheumatologists at the time. One told me, “You definitely have lupus.” One said, “You absolutely do not have lupus.” And another said, “You have undifferentiated connective tissue disease, which will probably turn into lupus.”

So with lupus, as with many autoimmune diseases, it’s obviously very common to take an extraordinarily long time to reach a diagnosis, and to receive conflicting information along the way. So, just the past month, I have been seeking out additional information. Decided I was going to find a new rheumatologist; interviewed several, and was told again, by one, “You definitely have lupus.” By the second one, “You definitely do not have lupus.” By the third one, “You may or may not have lupus, but you may have an unusual presentation of some other thing, such as ankylosing spondylitis or psoriasis, or psoriatic arthritis; a couple of other possibilities.”

So, long story short, a couple of decades in, still no diagnosis.

Angie Alt: Yeah; this is a really hard one for us. And part of the reason that I chose to interview you today, because I really wanted to share with the audience; which I know there are many of them out there just like you, that sometimes getting a diagnosis is a very long journey, a very protracted journey for a lot of us. And sometimes we’re starting the work of healing before we’re even 100% sure what we’re dealing with. For some of us, that may never come. And you’re a really great example of somebody who is persevering despite not having that information yet.

Stacy Smith: Right. One of the; I would almost say it’s a benefit of the autoimmune situation, is that there are certain things. Even if you don’t have a diagnosis, there are certain commonalities; quite a few of them, that can yield improvement for almost everyone. And diet, specifically AIP in this case, has been extraordinarily helpful for me. So even though I don’t have a diagnosis, I have a suspected diagnosis of lupus, which may or may not be the case. There are still things I can do to improve my situation, and that’s what I’ve been focusing on, while also trying to figure out exactly what it is that’s going on with me.

2. Coming to terms with the diagnosis [7:30]

Angie Alt: So, one of the questions that we often ask folks is about their experience coping with the disease, and how they felt when they were diagnosed. Obviously, you don’t have that piece of the story, but how do you feel not having that diagnosis?

Stacy Smith: Well, you know, I felt like I had that diagnosis, honestly. I spent several years identifying as part of the lupus community. And I still do, to a large point. That first doctor that I saw is the one that I stuck with, and to quote him, he said that my presentation was very likely to develop into the type of lupus where your kidneys are involved, and that I should expect to pass away from kidney disease. That was very clear-cut to me, regardless of what the others said. That was going from being a very healthy person with having no; I certainly hadn’t accepted that whatever was going on with me would possibly be life-threatening, because it had been going on for 15 years. Honestly, my thought was, “Whatever is going on with me is not life-threatening, or I wouldn’t still be here 15 years later.”

So for him to tell me that was honestly devastating. I would say that at the time I did not cope very well with my diagnosis. And it was one of those things that really took hitting rock bottom, and starting to pull yourself out over an extended period of time.

Angie Alt: Yeah. Yeah. You know, not every autoimmune disease that’s out there is quite so aggressive, or necessarily life-threatening. Certainly, it diminishes quality of life, but there are some that are really aggressive, and it’s scary to face a diagnosis like that. I can certainly understand that initially trying to cope with being told that this might be what’s happening must have been really tough.

Stacy Smith: Yes, and he didn’t have any doubt in his mind, and the way that he portrayed it. And my doubt has come since then with the more information that I gather, and the more educated I become, and the more that I advocate for myself. I question whether or not that’s really what’s going on, or if it isn’t something more unusual. So, regardless, it certainly has impacted my quality of life. But at this point, the wondering what is going on is driving me a little bit crazy.

Angie Alt: {laughs} Yeah.

Stacy Smith: {laughs} So. I’m putting a lot of energy into trying to get that answer, while at the same time trying to cultivate an acceptance that I may never actually achieve that.

3. Support of friends and family [10:38]

Angie Alt: Right. Right. Tell us about how your friends and family have handled your walk with chronic illness. Whatever we’re working with here. Have they been a source of support and strength for you?

Stacy Smith: You know, I found honestly that most of my friends did not understand what was happening at all. And I found that the most useful thing I could do was actually create new friendships with a different kind of people who got it. So I would encourage anyone who is finding that they don’t have the level of support that they need to be successful in their journey, in their life as it sits now, to consider releasing some of those relationships and building new and better ones.

Angie Alt: That’s such good advice {laughs}.

Stacy Smith: Go ahead?

Angie Alt: That’s such good advice.

Stacy Smith: You know, it’s hard. You want people to accept you as you are, but at some point, if they don’t, then you know what, that’s on them. And just let it go, and create a new community of people who are supportive. Because I think; as you know very well; connection is a critical piece of being able to manage your autoimmunity. Luckily, I did have someone in my life who was very understanding and supportive, and is to this day, and that is my boyfriend. He has been with me from the beginning, and really unshakeable in his support. I was a very different person when we met, with very different capabilities than I am now, and he just won’t quit. And on the days that I feel like quitting, he won’t let me quit. So I’m very thankful for him. He’s been a blessing.

4. First discovering it’s autoimmune [12:34]

Angie Alt: Aww. That’s great. That’s great to have that one rock-solid supporter. That’s my husband, too. So, let’s backtrack a little bit. When you first learned that what you could possibly be dealing with, and we realize this is an ongoing investigation for you.

Stacy Smith: Right.

Angie Alt: But when you first learned that what you could be dealing with was an autoimmune disease, what did you think about autoimmune disease? Was that something that you knew about prior, or was it like; “Oh my gosh, I didn’t even know that these existed?”

Stacy Smith: Well, during the period from when I first, let’s say got sick, to when I had a “diagnosis” in 2013, I had been to what felt like every doctor on the planet. Every specialty trying to get to the bottom of this. And I had been told that based on my very vague symptoms of fatigue, and my family history, that it was probably some form of autoimmune disease. Which was not rearing its ugly head to the point where it was observable with typical labs yet. So I was somewhat prepared. I thought at the time; my mother has a wide variety of autoimmune diseases, unfortunately, and so do many of the women in my family. So, I knew that it was possible. But what I didn’t do, unfortunately, that I would like to encourage anyone who maybe doesn’t have a diagnosis yet, and has this really precious window in which to do something, is to educate yourself now and take preemptive steps before something happens.

So, I had an early tip. And I didn’t utilize it. Which is spilled milk now, but I wish that I had known now what I did then, or I wish that I had known then what I do now. Excuse me. As many of us do. Because I did have sort of a wasted opportunity there to do something about it. So, I kind of knew it was coming, but didn’t really understand how it worked. My family had only ever used conventional medical treatment, and had more of a conventional thought process as to what autoimmune disease was.

Angie Alt: Mm-hmm. So it was making that leap. Maybe it was too early in your journey to know you should have made it. But I think all of us who chose other routes initially wish we could go back and put some of this diet and lifestyle stuff in place sooner.

Stacy Smith: Right, right. Exactly. Because traditional medicine is so much more focused on, “We’re going to wait until you are severely ill before we try and put a Band-Aid on it.” I really didn’t receive a message of, “Hey, this is what you can do now.” So that’s something that I like to try to educate others on today, hoping that maybe someone out there will hear the message and take the opportunity if it’s presented to them.

Angie Alt: Right. Right. So in that initial health care experience, it sounds like at first maybe you didn’t really react one way or the other. But then you may have started out trying to follow some conventional routes to dealing with the problem.

Stacy Smith: Yeah.

5. Finding your best fit doctor [15:58]

Angie Alt: So, there were obviously some doctors along the way. And folks you’re still probably working with. How did you find your best and most helpful doctor? This is such a tough one for those of us in the autoimmune community to find doctors that are really great people to have on our team. So how did you find your best and most helpful doctor?

Stacy Smith: You know; I would say that I’m still doing that now. I have had a difficult relationship with most of the physicians who are on my team. I am just; my goal for Q1 of this year has been to find a new rheumatology relationship, and I think I’ve found her. I spent a lot of time interviewing, and I found someone with whom I’m really comfortable. But it took a lot of advocacy on my part, and going in with the attitude of, “I’m interviewing you. I’m looking for the right partner for me,” and being willing to walk away from numerous people who were recommended to me but didn’t feel right to me.

So the individual that I chose, whom I’ve only seen twice, she did come from a recommendation, which is something I think is a great place to start. But this particular recommendation came from within the AI community; which I found was… I mean our AI community, looking at more natural treatments and holistic approach versus conventional approach. So that was a great place to start. I had heard that she actually recommended dietary and supplements as opposed to going straight to pharmaceuticals right off the bat; so that was a great sign.

And when I met with her, the thing that really stood out about her is no one else spent the amount of time with me that she did. She wrote out all of my symptoms, and created, on paper, a list of what her various theories were for what was going on with me. And everything that we would need to do to rule in or out each one. And then made sure that I had a copy of it, so that I understood what was going on. I was fully involved in the process.

So, what I would say to people who are trying to find the right relationship is that you have to be your best advocate. You have to devote time and energy to finding that relationship; that it is absolutely worth it. And not to quit, if you feel discouraged or you haven’t found it yet.

Angie Alt: Such great advice. It can be tough, right? When we invest the time into getting to know these doctors and trying to start a relationship with them, and then it doesn’t turn out to work. It can be hard to muster the energy to move on to the next one.

Stacy Smith: it does.

Angie Alt: But it sounds like you’ve been just totally dogged in your approach there, so that’s awesome.

Stacy Smith: It definitely requires energy. But what was the point of going back to the person that diet had nothing to do with autoimmune disease, and every time I saw him told me to expect that I would die of kidney failure. There really was no point. We had completely different views on what was going on, as well as how to handle it. And there was no partnership there. So it was sort of scary to let go of the person through whom I was able to monitor my antibodies every quarter. But sometimes you just have to trust in the universe that if you let go of some things that are holding you back, you will have room to invite the things that you need into your life.

Angie Alt: Right. That’s such a great way to look at that. You know; obviously what you’re describing here is really looking for somebody that you can collaborate with. Something that Mickey and I are really focused on with Autoimmune Wellness; learning this skill of collaborating with your health care team. Do you feel like your skills in that area have grown as a result of trying to manage your condition?

Stacy Smith: Absolutely. I have told all of these doctors that I am the quarterback here.

Angie Alt: {laughs}

Stacy Smith: {laughs} And some of them appreciate that, and some of them don’t. But in the beginning, I had a very; I would say, traditional experience. And then I thought; not to take anything away from the training and the level of knowledge that physicians have, at all. But that doesn’t mean that you have to blindly follow everything that they tell you. Or accept everything that they tell you without question, without investigation, or without trying to get your own education. And that’s where I started from, you know. The position of; “Well, whatever they tell me, they’re a doctor. That’s the way that it is.”

Angie Alt: Mm-hmm.

Stacy Smith: And now, I have a very different, very different stance on it. I mean, huge advocate for patient education, and partnership. So, I would say that’s one of the gifts that this has given me is learning to be much stronger in the way that I approach my medical relationships than before.

Angie Alt: Right. Right. I think most of us in the journey eventually get there. So, you see that we have to take that empowered stance if we want to achieve some wellness.

Stacy Smith: Yes.

6. First steps towards self-empowerment [21:36]

Angie Alt: And better quality of life. So, kind of moving on to treatment and how you’ve approached this. Do you remember what the first active step was that you took towards managing your condition? Like, the first step that you took that you felt like, “I am really at the head of this thing.”

Stacy Smith: The first step that I took was; well, when they told me I had lupus, they sent me home with a prescription for Plaquenil; which is a pretty standard lupus medication. I went and filled it, started taking it; had a horrible reaction. They then wrote me a script for prednisone. I was dutiful; I went to the pharmacy, filled it, started taking it; had a different but equally horrible reaction. They then basically told me, “I know your lifestyle is significantly hindered, but your organs show that they’re functioning sufficiently on your labs. Which means we can’t justify giving you the next level of medication. So, even though you can’t work, and you can’t walk, and you can’t do your sports, and you can’t, and you can’t and you can’t; we’re sending you home. Just stay in bed until it gets worse. When it gets worse, come back to us and we’ll give you a DMARD, or chemotherapy,” or any of the other more significant options, which they had to medically justify.

So I tried conventional treatment first; and feeling like it failed me is why I started seeking other solutions.

Angie Alt: Mm-hmm. So maybe that first active step was going; “These aren’t working for me. Now I have to choose something else.”

Stacy Smith: Right. I hit rock bottom, and that was the summer before I met you, Angie, where I spent a few months in bed. And honestly, I was feeling really sorry for myself. I felt like I had to walk away from my career in finance; which I spent my whole life working for. And all of my sports, which were very important to me. And I literally couldn’t even walk. And my understanding was that the medical community said, “There’s nothing we can do for you now.”

So, the first thing that I did after spending a few months feeling sorry for myself, really was to decide that no one was going to fix this but me. I had to take charge for myself. That I was not just going to sit there and waste away. And if there was a way, I was going to find it, and I was going to do it, and to heck with what anybody else said. So I started researching; that became my new full time job. And I found the connection between diet and autoimmune disease, and the first thing I tried was vegan.

Angie Alt: Mm-hmm.

Stacy Smith: I had actually been vegetarian for most of my 20s. Which I say vegetarian; but really it was more crab-etarian. One of those kinds of vegetarians.

Angie Alt: {laughs} Crab-etarian. I love it.

Stacy Smith: Crab-etarian. For sure. So I went vegan, and I felt honestly, horrible. I felt just absolutely horrible. I now understand why. But that was sort of my gateway to food as medicine as a possibility. And after that is when I found AIP. And choosing AIP was really the first thing that I did that made a positive impact in my health.

Angie Alt: That’s great.

Stacy Smith: It changed my life, honestly. Not just my health; but it changed the entire course of my life.

Angie Alt: Yeah. I mean, you’re not… I don’t think it’s too unusual to have folks kind of find their way into the AIP community through the door of vegetarianism or veganism. That is their first step in the direction that diet can help impact their healing. And maybe it opens the door, but it doesn’t kind of get them where they need to be, and then that’s kind of how they get here.

Stacy Smith: Right.

Angie Alt: So that’s, I think, something that a lot of our listeners will really relate to. So obviously, that’s how you discovered the autoimmune protocol, and that it could impact your healing. Was it difficult to adapt to AIP, or did you just jump right in?

Stacy Smith: You know, I was an overnight kind of person. I’ve always had that type of attitude. And I’ve been on fitness competition diets, which are very difficult, in the past. So I’m not a stranger to doing hard things with food. And I’m also sort of a zero to 60 individual in pretty much everything that I do. So I didn’t find it that hard, to be honest. The logistics of it were hard, but emotionally it wasn’t that difficult for me. Which I don’t want to portray that that it’s not extremely different for most people; its’ just for me, it wasn’t that bad. Thankfully.

Angie Alt: Great. I was kind of in the same spot as you. There are all kinds of different approaches to getting in there and doing it; and for some folks, it comes a little more easily than others.

Stacy Smith: I think it also depends on how sick you are.

Angie Alt: Yeah.

Stacy Smith: You know; for me, I was at my absolutely rock bottom in my life, and felt like there was no one to help me and nothing else to try, and desperation can be a great motivator, you know.

Angie Alt: Yeah.

Stacy Smith: It can make you do some things you didn’t think you could do.

Angie Alt: Yeah.

Stacy Smith: So it certainly worked that way for me.

Angie Alt: I totally relate. I was in the same exact spot. I thought, “I cannot have one more anaphylaxis style reaction and end up in the emergency room. I have to do something right now.”

Stacy Smith: Right.

7. Greatest dietary and lifestyle impact of AIP [27:52]

Angie Alt: Was there any one aspect of the dietary change that really stood out to you as making the greatest impact? Like, did you find that particular food eliminations really had an impact? Did you find that certain nutrient dense additions were the impact? What stood out to you there?

Stacy Smith: I would say two things. Going from vegan, which was very high grains, to grain-free, I felt tremendously better, and my inflammation was enormously improved. Within 60 days, I knew that this was working for me. But within a few weeks, I could literally walk again. Which was obviously huge. But the one portion that I think has been most significant in my recovery is actually the introduction of healthy fats. Because I spent 10 years on, after the crab-etarian period, I was in the low-fat, no-fat fitness diet period for a long time. With periods of overtraining, and underfeeding for competition goals. And there was no fat in there, anywhere, ever.

So now understanding the downstream impact from that, I think that getting over my fat phobia. Which honestly took actually going to school with the Nutritional Therapy Association, and doing a lot of research to really truly understand that everything I thought I knew was actually wrong. But getting over my fat phobia and incorporating healthy fats into my diet, and seeing how much better I felt. And then also understanding it was helping to balance my hormones, and my inflammation, and everything else was really monumental for me.

Angie Alt: Yeah. Yeah. Totally. The information we get in Nutritional Therapy education about fat is just, it’s awesome. Rock solid stuff to understand right there. So, we know obviously that the autoimmune protocol is not just about diet; there’s also a lifestyle component that often takes a little more time to implement, but it can be equally important. So first of all; did you make any changes to your lifestyle following getting sick. Things like career changes, living arrangements; it sounds like earlier you kind of mentioned there were career changes. And then going forward, has there been any one area of lifestyle that has really impacted your healing journey? Like managing sleep better, or stress better. Things like that.

Stacy Smith: You know; I made sort of an involuntary lifestyle change when I first was very ill in 2013 and had to leave my job. Which that was something that I was very upset over at the time. But in hindsight, I can tell you with every certainty that I would have done that anyway. That that needed to happen anyway. And I’m happy to not be in that situation anymore where I’m working 80 hours a week, and the stress level was ridiculous, and you regularly answer emails to clients at 2 or 3 in the morning. So that change had already happened.

But it’s more that I embraced that that change was good and necessary, rather than holding this pain in my heart attached to that change. So, really, I focused solely on diet for a long time. And as you know, I’ve been on AIP full elimination for quite a while now. And I didn’t start looking at the lifestyle aspects until I had been on it for a really long time, and felt like; ok. I’ve done probably the majority of what I can do with food; for me in my particular case. It’s not going to solve everything for me, so what’s next? Then I started attacking the lifestyle aspects. Or investigating them one at a time; really delving into them one at a time. And that shift has been huge for me.

In my case; I feel like this is all a lesson to me to deal with all of the things that I have never dealt with in my life. And I feel like one of my roadblocks is working through that. Right? The only way out is through. All the things that I have not wanted to go through in my life, I am embracing them all now. And that’s where I’m seeing positive changes. For me, I think a lot of this is related to adrenal health. So stress management and sleep hygiene are still two of my biggest challenges. I have periods where I have those; a lot of self-care practices in place that really improve how I feel on a day to day basis. And then I have periods where I sort of lose control of those things temporarily, and I definitely feel worse.

So I would say; for those listeners who lead a very hectic life, and sort of have a driver, type A personality where you can never quit what you’re doing, where relaxation is a dirty word. I would challenge them to really embrace the lifestyle aspects as well as the diet. Because I feel like we’re going for holistic health, and it is more than just food. I feel like the food is required; but you are going to have a much harder time getting there if you don’t look at the lifestyle aspects. Especially stress and sleep, if you have a driver type of personality.

Angie Alt: Yeah. It can be really hard to come to terms with that, if you’re that kind of personality. But tackling it in the end probably pays pretty big dividends.

Stacy Smith: Yes. It’s the things that we don’t want. I don’t care if it’s food or lifestyle; it’s the things that we don’t want that we need the most.

Angie Alt: Yeah. Yeah. {laughs}

Stacy Smith: You know.

Angie Alt: It’s true.

Stacy Smith: So whether you’re talking about organ meats, or you’re talking about going to counseling; it’s the stuff you don’t want that you really have to dig into to be whole and to be healthy.

8. Lowest and highest points of Stacy’s journey [34:50]

Angie Alt: Yep. So true. It’s totally true. So let’s talk about the ebb and flow of disease a little bit. Because we know autoimmune disease is not just this perfectly straight line, pretty predictable thing. Anything but predictable. There’s definitely a bit of a rollercoaster with it. What do you think has been maybe a particularly low point for you in the disease experience? And you know, on the positive side; what has been a really high point, where you either felt really great, or you felt really empowered about what you were doing to heal?

Stacy Smith: Definitely my lowest point was the summer that I spent in bed, kind of playing my tiny violin for myself, feeling like there was nothing I could do. And being physically unable to walk. Where shortly prior to, I was very involved in cycling, and weight lifting, and all of the activities that I loved. And to me; one of my best memories was walking into the hotel at the Nutritional Therapy Association workshop weekend, after I had been on AIP for a few months, and having them just look at me with curiosity and confusion, because I had booked a handicap accessible room, and asked for a wheelchair when I made my reservations.

Just being able to walk in there like everybody else; I had a giant smile on my face, and I was pretty proud of myself. And I knew that they weren’t going to understand, and I was kind of excited about that. So I had a great conversation with the lady I had been working with the whole time, to make those handicap accessible arrangements. And she gave me a hug, and it felt really great, honestly. And that was all because of AIP.

Angie Alt: Aww. Yeah, I mean I can say for the listeners. I met you for the first time face-to-face; I had known you kind of online and seen your presence there. But I met you for the first time face-to-face at our workshop weekend. And I honestly wouldn’t have known that you had made such a big recovery from the summer before, if you had not told me. You were clearly on the right path with what you were doing.

Stacy Smith: Well thank you. It was great to be able to go and interact with peers, and to sort of be a part of society again.

9. Stacy’s present health situation [37:29]

Angie Alt: Mm-hmm. Right. How would you describe your present? Where are you at in terms of wellness right now? We kind of got a little bit of a sneak peek earlier in our conversation about where you’re at right now. But tell us some more about that.

Stacy Smith: So right now, I am excited to say that my gut is in pretty good shape. I can tell you that AIP works, because I got some testing back recently and my functional medicine doctor was like, “Wow! I’ve not seen anyone with autoimmune disease whose gut looks this great!” So, that’s what a year and a half on AIP, full elimination can do for you. I do have a little bit of unresolved SIBO that I have to decide how I’m going to handle it. I don’t have any GI symptoms at all. So knowing that most of the time in my opinion you have to treat SIBO with antibiotics, and also that my gut is in pretty darn good shape, I need to make a decision about how I’m going to move forward with that.

What I’m trying to do right now is track down the cause of my other symptoms. The one thing that has not resolved enough for me is the fatigue. Which was my original symptom. So with the diet, I’m able to be functional in life again, but not nearly to the capacity that I was, and not far enough for what I’m looking for. My fatigue is still my limiting factor. I also have a couple of injuries, from a minor bike accident, which have not healed in 2 years, which are causing me some significant issues in my daily life. And which I had been told by my prior medical providers were all unrelated incidence. And my gut kept saying, “I don’t think so.” I think this is systemic. I think there’s a reason why this normally heals in most people in X number of months, and for me all three of these things have been happening for 2 years. And this latest rheumatologist is in agreement with me; that the orthopedic things I’m experiencing are really part of the disease process.

So I’m trying to get a handle on exactly what’s going on with my diagnosis, so that I can resolve the orthopedic issues, as well as improve my level of fatigue is kind of where I’m at. I’m also really looking at other underlying factors now. I’m trying to see if there is anything else going on. I know my adrenals are involved. I know I have low-level hydrogen variety SIBO. I’m sort of chasing some more unusual possibilities at the moment; like metals, or Lyme, or I know that MTHFR is an issue for me. So I’m really at the point, because I haven’t fully resolved back to the level of functionality that I need, that I’m chasing all the leads that I can right now, one at a time.

Angie Alt: Yeah; you’re kind of investigating all those remaining threads that could be preventing progress, and trying to really fine tune.

Stacy Smith: Yep. So it could be one thing; it could be a combination of a lot of things for me. My case has always been very complex. So I just am not going to quit until I figure it out.

Angie Alt: I mean; if this episode isn’t sounding like empowerment to you guys, I don’t know what empowerment is. Listen to this lady.

Stacy Smith: {laughs}

Angie Alt: She’s following it all the way to the end.

Stacy Smith: All the way; that’s right.

10. Tips for beginning the journey [41:29]

Angie Alt: Stacy, do you have any helpful tips or takeaways for anyone beginning their autoimmune healing journey? You’re well in; you’re kind of really in the weeds now, at this point. But what would you say to people that are just at the beginning?

Stacy Smith: You know, what I want them to know is that this is something that they can take on themselves. If they feel like they don’t have help from the medical community yet; they haven’t found the right relationship yet; if someone tells them there’s nothing they can do; I want them to know that there’s something they can do. All is not lost. All is not hopeless. You do have the power to create positive changes in your life yourself.

And I also want them to understand that listening to your body, and being prepared to make long-term lifestyle adjustments to support your health is critical. I spent the majority of my life doing everything I could to not listen to my body {laughs} you know. I was very much in the, “Pain is weakness leaving the body,” camp. And that is such a disservice, on so many levels. Now I really seek to listen to my body on every level; physically, emotionally, and otherwise. And for those of you who maybe aren’t quite in tune yet with what your body is trying to tell you, whether you’re talking about food, exercise, lifestyle; what have you. I would really encourage you to, whether you’re journaling or through meditation, or any avenue that you find useful, I would really encourage you to try to learn to listen to your body, instead of to silence it.

Angie Alt: Such good advice. That’s just such good advice. Something we talk about a lot in SAD to AIP in 6. Stacy is a coach with me in that program, and this is something we really try to help people learn over the course of 6 weeks. How to listen to their bodies, and gain that skill.

Stacy, thank you so much. This is a great interview. I think our listeners are really going to enjoy hearing about your experience. There is so much to relate to there, and you’ve been a wealth of information about how to approach it.

If people want to keep up with you, where they can do this; how can they do this? How can they connect with you?

Stacy Smith: It’s been great to be here, Angie, so thank you for having me. Anyone who wants to connect with me, you can find me at www.ViridisWellness.com*, and that’s V-I-R-I-D-I-S. Viridis is Latin for green; and Angie knows that nature is one of my true passions. So that’s where that comes from.

*Please follow stacy on Instagram @viridiswellness while her site is under construction.

As you said, I also coach with you on SAD to AIP in 6; so anyone who wants to investigate that excellent program, our paths might cross there. And I have a really fun project in the works with my partner, Kelsey Albers from Ignite, Nourish, Thrive, called the Autoimmune Athlete. You can find us on www.theautoimmuneathlete.com, as well as in our private Facebook group by the same name.

Angie Alt: Awesome. Thanks so much. You’ve got so much cooking. Love it!

Stacy Smith: Lots of things in the air. Lots of good, fun stuff coming.

Angie Alt: Right. We are wishing you so much success as you continue to navigate the autoimmune wellness journey. Stacy, I know there’s’ a lot going on for you, but it sounds like you are well on your way. We will be back next time, everybody, with a Q&A episode. Take care everyone!

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About Angie Alt

Angie Alt is part of the blogging duo behind Autoimmune Paleo. She helps others take charge of their health the same way she took charge of her own after suffering with Celiac and other autoimmune diseases; one creative, nutritious meal 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’s also a world traveler who has been medically evacuated from two foreign countries. Strategizing worst-case scenarios is now something of a hobby. She is a Certified Health Coach through the Institute for Integrative Nutrition and author of The Alternative Autoimmune Cookbook: Eating for All Phases of the Paleo Autoimmune Protocol. You can also find her on Instagram.

8 comments

  • Thanks so much for sharing these stories! They have been a huge help since I started doing AIP earlier this year. I listened to all of season one, and I’m so glad season two is back!

    • Angie Alt says

      You are so welcome Emily! We’re glad you have found it so helpful!

    • Mickey Trescott says

      Happy you are enjoying them! That is why we do this Emily!

  • Another home run ladies!! I so enjoyed today’s podcast with Stacie Smith from the Midwest) and thank you again for your hard work on behalf of all of us struggling with autoimmune.
    I loved that today’s conversation was about partnership, empowerment as an unexpected gift along the road of healing. this. I had not has that “ah ha” moment until today. Thank you.
    At age 67m I am all about taking charge of my health and using food as medicine though I was certainly not always this way. It took me until my 60’s to get strong enough to take charge . I still have high and lows on this journey and will also never be as strong or athletic as I was one in my prime but I can live with that.
    After more than 50 years of dealing with four autoimmune conditions, acceptance has begun to be a big part of my journey too. And while it can be emotionally rough it has also brought me some peace of mind at last as well. I’ve learned that acceptance is part of the aging process and the autoimmune journey too. Namaste!

    • Mickey Trescott says

      Thank you for the comment Donna, and we are all wishing you the best on your journey!

  • Lisa Viviani says

    Hi! Great episode. I’m in the same “maybe Lupus” loop, though I’m lucky to have caught it before I became symptomatic. I’m treating with alternative medicine / diet as if I had a diagnosis, which I don’t. Just wanted to ask – Stacy’s Viridis URL above is not an active site – does she have a FB page to follow instead? Thanks!

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