Thanks for joining us for episode 112 of The Ancestral RDs podcast. If you want to keep up with our podcasts, subscribe in iTunes and never miss an episode! Remember, please send us your question if you’d like us to answer it on the show.
Eileen Laird is a writer, podcast host, and autoimmune warrior who manages rheumatoid arthritis with the help of the autoimmune paleo diet and lifestyle. She’s the author of the book, A Simple Guide to the Paleo Autoimmune Protocol and the editor of the popular Paleo AIP Instant Pot E-Cookbook. Her popular blog, Phoenix Helix, receives over 1.5 million unique visitors annually. There, she features recipes, research, and personal stories about the autoimmune experience. She also hosts the Phoenix Helix Podcast, the first paleo podcast to focus 100% on autoimmune health. You can find her at PhoenixHelix.com.
Today’s podcast provides to those with autoimmune disease hope and inspiration to live an empowered life. Eileen shares her journey of reclaiming her life from rheumatoid arthritis by combining diet and lifestyle changes with conventional medicine.
Listen as we discuss with Eileen her personal experience with the autoimmune paleo diet and what she finds to be the biggest mistake people make when starting. We also talk about other important approaches to treatment such as emotional factors involved in healing and her decision to utilize conventional medicine.
Here are some of the questions we discussed with Eileen:
- What has your personal experience with autoimmune disease been like?
- How long ago was it that you discovered the Paleo approach?
- Did you start with the typical paleo diet or did you do anything special in the beginning?
- Were there any foods that were major issues for you that you discovered through this process?
- Where there any foods that you were surprised that you could eat without problems?
- What was your experience with the reintroduction protocol?
- Did you ever have any symptoms that were not joint pain related that you knew were a problem?
- What would you say is the most common challenge or mistake that you see from your readers who are implementing the autoimmune protocol?
- What kind of emotional or mental health factors have been an important part of your autoimmune disease treatment approach?
- What made you decide to take a more conventional route to treatment and rely on allopathic medicine as an option for improving your overall health?
- How long did the process take you from first staring medication to finding one that really worked for you?
- Did you get any backlash on your blog when you shared your story of deciding to try medication?
- This episode is sponsored by Paleo Rehab
- A Simple Guide to the Paleo Autoimmune Protocol
- The Paleo AIP Instant Pot Cookbook
- Eileen’s blog post “Starting Medication After 4 Years On The Paleo Autoimmune Protocol”
- Phoenix Helix Podcast Episode 48: Medication Decisions
- Phoenix Helix Podcast Episode 59: Self-Inquiry And Freedom From Suffering With Byron Katie
- The Work technique by Byron Katie
Laura: Hi everyone! Welcome to episode 112 of The Ancestral RDs podcast. I’m Laura Schoenfeld and with me as always is my cohost Kelsey Kinney.
Kelsey: Hey everybody!
Laura: We’re Registered Dietitians with a passion for ancestral health, real food nutrition, and sharing evidence-based guidance that combines science with common sense. You can find me, Laura, at LauraSchoenfeldRD.com, and Kelsey over at KelseyKinney.com.
We have a great guest on the show today who’s going to be sharing her insight into recovering from autoimmune disease. We’re really glad she’s joining us. For those of you with an autoimmune condition, we hope you’ll learn a lot today.
Kelsey: If you’re enjoying the show, subscribe on iTunes so that you never miss an episode. While you’re in there, leave us a positive review so that others can discover the show as well! And remember, we want to answer your question, so head over to TheAncestralRDs.com to submit a health-related question that we can answer or suggest a guest you’d love for us to interview on an upcoming show.
Laura: Before we get into our interview for today, here’s a quick word from our sponsor:
This episode is brought to you by Paleo Rehab, a five week online program designed to help you recover from HPA axis dysfunction, also known as adrenal fatigue. Is your perfect Paleo diet and lifestyle leaving you exhausted? Now is the time to start feeling the health and wellness you know you deserve. If you’re sick and tired of feeling sick and tired, and are ready to take back your health, then head over to MyPaleoRehab.com to get your free 28 page e-book on the 3 step plan for healing from adrenal fatigue. That’s www.MyPaleoRehab.com
Laura:Welcome back everyone! We are so happy to have with us today Eileen Laird! Eileen is a writer, podcast host, and autoimmune warrior who manages rheumatoid arthritis with the help of the autoimmune paleo diet and lifestyle. She’s the author of the book, A Simple Guide to the Paleo Autoimmune Protocol and the editor of the popular Paleo AIP Instant Pot E-Cookbook. Her popular blog, Phoenix Helix, receives over 1.5 million unique visitors annually. There, she features recipes, research, and personal stories about the autoimmune experience. She also hosts the Phoenix Helix Podcast, the first paleo podcast to focus 100% on autoimmune health. You can find her at PhoenixHelix.com.
Welcome to the show, Eileen! We’re so glad you’re with us.
Eileen: Thank you for having me. I’m excited to be here!
Laura: Absolutely. I know that your book A Simple Guide To the Paleo Autoimmune Protocol has been one that I’ve been recommending to a lot of my clients who are just getting started with AIP. I just love how short it is, which I know sounds really silly, but there’s a lot of autoimmune books out there that when they get them they’re like textbooks which I think can be a little bit overwhelming for people that are just getting started. I’ve had a lot of really good feedback about your shorter guide, which certainly isn’t too short to be helpful, but it’s short enough that it’s not overwhelming. I’m really glad that that’s something that’s out there to refer patients to.
Eileen: Thank you so much. That was exactly my goal is I wanted it to be an unintimidating introduction to the diet that people can really just go ahead and get started. And then if they want to dig further, there’s so much great information out there.
Laura: I think you’re pretty popular within the paleo community. But if there are anyone listening on our call today that doesn’t know who you are, would you mind telling us your story and just sharing what your personal experience with autoimmune disease has been?
Eileen: Yeah, absolutely. I was a healthy 43 year old woman. I was working full time as a massage therapist and I did a lot of deep tissue therapy, so I was pretty strong. I hiked on the weekends for fun and the most recent vacation I had taken was to Moab, Utah where we were doing 10 mile pretty strenuous hikes in the canyons. It was so fun!
Life was good and I didn’t have any of the typical triggers for autoimmune disease that some people do. Nothing bad happened, there were no tragedy’s that led to it. I wasn’t sick first. Sometimes that stimulates it. I just woke up one day and I had a pain in one foot that I thought was weird but I figured it would go away. And then the next day this same pain was in the other foot on the exact same spot. By the end of the week, I couldn’t walk without limping. Within a short period of time, within I’d say a month or so it spread to my hands and then within a few months it was throughout my body. It was Rheumatoid Arthritis.
If you had asked me to share this story five years ago, I cried every time I talked about it. I think anyone new to an autoimmune diagnosis it’s just so devastating. It’s not something you ever want to hear. It’s not curable. The prognosis is usually really scary. It’s just where you continue to lose function and abilities over time with Rheumatoid Arthritis. It attacks the joints and it can cause permanent damage to those joints. The pain is just really hard to describe. I can tell you that in my 43 years prior I had experienced nothing to that level so I thought it deserved its own word. It was something I felt like I could not survive but at the same time I was still alive. I had to find a way to make it through.
I did hop on the internet looking for solutions. I’m so thankful the internet was out there. I heard about the paleo diet and lifestyle and started implementing that. That was the first effort I had made that started to make a difference. It started to decrease my inflammation instead of increase it. It was like a light at the end of the tunnel for me.
Laura: How long ago was it that you discovered the paleo approach?
Eileen: This all happened in 2012. I think my first symptom was in January, I was disabled by April or May to the point that I couldn’t work, and then I started paleo in June.
Laura: Oh, so it was pretty fast turnaround. You didn’t have months or years that you were not aware of the approach. It sounds like you got on Google pretty fast once you got your diagnosis.
Eileen: I absolutely did and I think that’s partly personality, is I didn’t want to take a medication. And I know we’ll be talking more about how that changed for me over time, but I was really hoping to avoid that path and I was disabled so I needed to do something. I think a lot of people come to paleo if the medication isn’t as successful as they had hoped. They try the conventional “easy” path first maybe, and then if that doesn’t work then they’re ready to make the kind of changes necessary in their lifestyle. For me since I wanted to avoid the medication, I dove right into the diet and lifestyle.
Laura: I would think it may also have to do with how severe the symptoms are since autoimmune diseases can obviously manifest as a variety of different things. Sometimes I’ll talk to people who have an autoimmune disease and let’s say they have Psoriasis on their scalp or something and it’s annoying, but it’s not debilitating. The idea of totally overhauling their diet and getting rid of gluten, and dairy, and all these things that are part of a normal diet, it sounds a little bit crazy to them. But for your experience being so severely disabled by it, I would assume you would have done anything at that point.
Eileen: Yes. What do they say? They say it’s when the pain of not changing is higher than the pain of changing. I think that’s really true. I was at rock bottom. You’re absolutely right, there are milder versions of RA too where people just their wrists kind of hurt and they can no longer lift weights, but they can still do most of daily life. So the motivation is not going to be as high than if you were in my case where I was limping crossing my living room, I didn’t have the strength in my wrists to lift a pan, I couldn’t raise my arms above my head to wash my hair, I couldn’t sleep because it hurt to lie down on my joints.
I had a new flare every night in a different joint of my body. I had pain body wide, but then one joint would be chosen for that night’s joint and it would leave me gasping and I would have to immobilize it. My shoulder might go into a sling, my wrist into a brace. Or if it was my jaw, I actually couldn’t open my mouth to speak or to eat. It was terrifying. It was definitely, they call it rapid and severe onset.
Laura: With the diet approach, you started with just the typical paleo diet? Or did you do anything special in the beginning?
Eileen: What I should tell people too is because paleo is kind of, now I think it’s maybe a little bit more well known, but it’s still not totally mainstream. When I first thought of diet, I tried vegetarian and vegan first when things were first going wrong and that didn’t help at all. My inflammation continued to get worse and I now understand why because I was kind of increasing the grains and the legumes. That didn’t work.
And then I did just try regular gluten free, sugar free. I remember back then, which makes me laugh now, hoping that I wouldn’t have to do anything that strict for that long. And now it seems like that would be so easy. But that didn’t help either frankly. It helped me feel better ironically for just a couple of days and then the inflammation just came right back.
But yeah, the first gateway into paleo was actually GAPS. I learned about the GAPS diet at the same time I learned about Paleo. I did a kind of a combination of those two things and I had seen the autoimmune protocol information out there. There wasn’t a ton, but there was some and it intimidated me. I just thought it was too restrictive. I was coming from a standard American diet and I was hoping paleo would be enough. I will say that for some people, it is. I think not everyone has to go full AIP. I gave that a shot first and it did make a big difference. And then about five months in, I plateaued in my healing and I knew I wanted to feel better than that.
What changed is my flares became moderate instead of severe a few times per month instead of daily. I could walk maybe a half mile, that was all. But I was back at work part time. So my life got better, but I knew it could get better than that. Then I think for me, I was finally ready for AIP. In the beginning, honestly, it was too much for me.
Laura: Did you combine the autoimmune protocol with GAPS? I know GAPS tends to be a lot more focused on kind of gut health foods and avoiding certain things that would potentially flare gut infections, that kind of thing. Did you just transition from GAPS to AIP, or did you combine them?
Eileen: I combined them for a while and then I tested out the GAPS theory on myself later. I did GAPS kind of by itself first, except I also removed nightshade vegetables because of the RA connection. Then when I went AIP, I continued to eat low starch which was kind of the GAPS mindset. Both of them focus on bone broth, nutrient density, all of that, so I kept that going. And then I went through my full AIP elimination and reintroductions before I then tested my starch tolerance just to see which starches did and didn’t work for me or if I even needed to limit them at all. It turned out that I was lucky that I came in though the GAPS doorway because I do have some starch sensitivity. I can eat some, but if I eat too much, it increases inflammation for me.
Laura: Now that you’ve been experimenting with the paleo diet, the GAPS diet, autoimmune protocol for the last I think I guess we’re going on five years now, is that right?
Eileen: Yeah, almost.
Laura: What have you discovered to be the most important dietary factors in your success in the last five years?
Eileen: In terms of food or being able to keep it going?
Laura: Well, actually that’s a good question. I was thinking more were there specific foods that like you were saying before with starch that you realize you were starch intolerant or had some starches that you didn’t do well with. A lot of the clients that I work with, and Kelsey, I don’t know if you’re the same here, but they’ll do the autoimmune protocol and reintroduction and they’ll find that there’s only a handful of autoimmune specific foods that really trigger their symptoms and that they can reintroduce things. Were there any foods that were major issues for you that you discovered through this process?
Eileen: Yeah, and I’m glad you mentioned that because I think it’s really clear and we really try and get the message out there that the AIP elimination phase is just a phase and reintroductions are really important. But yet you still find people who kind of either miss that information or are afraid of reintroductions or something. I am just like the two of you, I really think the reintroduction part of it is important when people are ready and expanding our diet is important and that’s how we personalize it.
Yeah, I was excited for reintroductions actually. For me the main triggers I found were nightshades and dairy. I never tried to reintroduce gluten by the way so I really don’t know if that’s a trigger for me. But nightshades and diary were the biggest. Nightshades the absolute biggest which kind of fits the RA stereotype.
For dairy it was interesting. I think the reason it was inflammatory for me is I do have a hormone response to dairy even the raw, grass fed, goat, doesn’t matter what kind of animal, whether it’s organic or not, pastured, none of that. They all have hormones to help babies grow and somehow that triggers something in my body. I know the hormone/autoimmune connection is pretty strong. When you’re having hormone swings, it can cause autoimmune flares. That might have been why. But those were the two for me that were the biggest and that I’m real careful to avoid.
Laura: Where there any foods that you were surprised that you could eat without problems?
Eileen: Ironically for me, I think I had a little denial where I was hoping I would almost get everything back – do you know what I mean? – with the reintroductions. But at the same time I will say that when a reintroduction failed, although there was a grief to that and then you have to kind of get through the flare that happens, but that information is so clear that it made it there was no willpower needed at that point to avoid those foods going forward because the clear connection, the pain was made for me.
I got eggs back to the point that I could seriously eat a high number of eggs every single day and have no inflammatory reaction at all. I do try and have a diverse diet so I don’t necessarily do that, but that’s really nice because that’s such a convenient food and that is one that’s a trigger for a lot of people. I’m grateful that that’s not one for me.
Chocolate is fine for me which made me really happy. I can have nuts and seeds kind of more in moderation. I find that those actually, I think from a gut irritant perspective if I have them every day I’m going to start to feel some low grade inflammation that doesn’t feel good. If I have them once and a while, they’re just delicious with no real negatives.
I did reintroduce white rice later on and I have no autoimmune reaction to that at all. It just tends to tap sugar cravings if I eat too much of it. I like having that just because it’s a convenience food and it tastes really good with a nightshade free curry recipe I have. I try not to get in the habit of having that all the time. And then later on like I said I tested the starch situation, and so sweet potatoes actually are pretty inflammatory for me. Plantains I can have once in a while, just not a ton. The GAPS-allowed veggies like butternut squashes and so forth, beets, and carrots that are pretty low starch I do well with those.
Laura: The reintroduction process I almost think is potentially more difficult than the elimination protocol. The only reason I mention that is because the rules for the AIP protocol are very, I don’t want to say black and white, but it’s pretty much eat these foods, don’t eat these foods and that’s the protocol. I find that a lot of my clients really struggle with the reintroduction process because it’s so individual. They have to be paying attention to their symptoms and sometimes these symptoms don’t show up right away.
I think with the reintroduction period you definitely want to give it a few days before you try another food. But there’s also the concept that it’s more of a dose response issue. If you’re eating it a lot overtime, then eventually you’ll start seeing problems. What was your experience with the reintroduction protocol? Did you find that super frustrating? Or was it easy for you? How did you go about that?
Eileen: It requires a lot of patience and at a time when people are maybe feeling really deprived. It’s a hard psychological combination I think. And then what you said is absolutely true. I actually recommend a second phase reintroduction. For example, when I tried nightshades what I made it was taco burgers with some chili powder. I flared so severely the next day and that pain lasted for two weeks so there was no need to do a second test. For me I knew that was not good. But then when I reintroduced almonds, it seemed fine. Then I went ahead after 72 hours had passed and had no flare, I ate them every day for about five days. By the end of five days I was starting to feel worse so that was a way for me to discern the foods that I can have once in a while versus the foods I can have every day. When I did the same second phase test on eggs, after five days I was still fine.
I recommended people do that because I do think in the long run that helps you. What’s hard is that extends your reintroduction process. But if you don’t do it like you said, say you get three foods back in you thought were fine, and you’re a month and a half down the road and you’re starting to feel a lot of inflammation again, you can’t really tell what’s causing that.
Laura: Did you ever have any symptoms that were not joint pain related that you knew were a problem?
Eileen: Insomnia was my first symptom, interesting, because that would happen usually the night of the food introduction for me if it was a problem food. I don’t usually have insomnia. Or I didn’t, now I’m 49 so occasionally that happens. But anyway, so that was one. Digestive stuff sometimes.
I did reintroduce legumes later down the road because I was curious since some people do well with those. I got depressed for a few days. That was a mood, like a brain response for me. For me typically the joints are the biggest place I pay attention to. But yeah, your body can communicate lots of different ways.
Laura: I think that’s one of the hard parts with autoimmune disease is you may be paying attention to one symptom that’s your biggest issue, but you don’t realize that that food is triggering other problems. Just being able to be that attuned to your body’s changes can be challenging.
And then there’s the thought that maybe that symptom was just random and it just was a coincidence that that day you weren’t feeling so good, or you were tired, or you didn’t sleep well. It’s like was it the food. Was it just a hormonal thing? Did I just watch TV too late? Anything that can contribute to that. It can make it a lot harder for people that don’t have those really strong reactions like the one that you had with the chili powder.
Laura: Absolutely. That’s why I think it is helpful if you think it’s okay to eat it every day for a little bit without adding anything new just to see what happens. I will say although it’s a hard process, I think it’s a really empowering one and I feel like I’m very tuned into my body.
But I’m glad you mentioned that it’s not always the food because later on down the road when you’ve done the reintroduction process, and you’ve even done that phase two that I recommend, and you kind of know which foods are your good and bad foods, people will often suddenly think that they now are developing new food intolerances. A lot of times it is those other things. It’s stress, or it’s hormones, or who knows? Maybe you painted your house and you got fumes going. To really look outside just the food angle so that people don’t just restrict, restrict, restrict as their response to trying to feel better.
Laura: Right. And then there’s also the issue that comes up a lot with our clients where restricting too much actually leads to problems and symptoms. The fatigue issue I think is a big one where yeah, that can be caused by a food sensitivity, but it could also just be caused by not eating enough. A lot of people that are doing the autoimmune protocol, if they’re not really careful it can be really easy to start getting malnourished because they’re just avoiding too many foods.
Eileen: I agree. And then the stress of that, like the fear of food itself can really wear you out. In a way it’s this huge holistic journey where also I think the mind/body piece is really important and just to try and just really be centered all the time without trying to be perfect all the time. It’s just kind of tricky. I think just trying to hit all those areas and do the best we can and give ourselves a lot of grace and then breathe deeply as often as you can remember to do so.
Laura: On that note, what would you say is the most common challenge or mistake that you see from your readers who are implementing the autoimmune protocol?
Eileen: Thinking it’s all about the food is definitely a really common mistake. In some ways a mistake, other ways, I get it where it’s kind of like you said the yes/no list is easier to follow. The first time you’re kind of entering this community it makes sense to hit diet first, but pretty soon you need to address those other areas. Everything from sleep from stress management.
The other piece is I think, and I think it happened to me and it happens to a lot of people, is the pursuit of health becomes an obsession. It becomes your entire world. You stop having fun in any other way and all of your free time is spent researching whether it be books, podcasts, blogs, all of that kind of stuff. All of your conversations are centered around disease and healing through diet and lifestyle. I think you can kind of, I don’t know, the world can get kind of small and very unbalanced.
I think it’s really important to just find a time every day when you aren’t talking or thinking about your health, what brings you joy and make time for joy in your life. That’s hard when you’re at your worst, but it’s actually super important even then because you need joy more than ever I think when you’re experiencing a lot of pain. But then also as you move forward to just widen your life that as you get healthier, do more things that don’t have to do with trying to get healthier, and ironically they help you get healthier.
Laura: It’s so hard when you’re like do this to get healthier, but don’t think about it as getting healthy thing. It should be because you’re just trying to enjoy yourself. It can be a little bit of a tough thing to instruct people on. For you in that area, what kind of lifestyle or maybe emotional or mental health factors have been an important part of your autoimmune disease treatment approach?
Eileen: In the beginning when I was flaring, meditation was super important to me. I’m not someone who I would say meditation was pain relieving, but it calmed me down so that my emotions weren’t, like I wasn’t in pain emotionally. I wasn’t being tortured emotionally by the physical pain I was experiencing. Which can feel very counterintuitive, but I think if you do any research on the internet on meditation and pain, that’s often what happens. It’s weird. It’s like you can be peaceful in that experience.
As I got better, I actually meditated less. But there are times when I just know I really need it. I try to just take time to relax every day. At this point like five years in, I’m doing a lot better, but I can still get in a zone where I just don’t take time to take a break if I’m having a busy work day. I do try a few times per day, I work from home now so this makes it a little easier. Sometimes if it’s a super busy day, I might just go lie down for 10 minutes and breathe deeply. It’s not a nap, but it’s just like a parasympathetic reset which helps. If it’s a nice day, I get outside if I can.
In terms of joy in my life, being able to get back to hiking was really nice. But I also like reading like total fluff novels where nothing really bad happens to anyone, or watching something really funny. I like spending time with my friends. Just simple things in life to just keep it balanced.
There have been times when I’ve really struggled with certain decisions or the difficulties of having rheumatoid arthritis. I don’t know if you’ve all heard of Byron Katie, but she has a technique called “The Work” that kind of helps you break free when you feel trapped by an emotion or a though that’s just dogging you, or you feel stuck in your life and you can’t move forward. There’s a technique called “The Work” that helps you work though that. That has helped me at pivotal junctures in my journey.
Laura: I feel like I’m familiar with her name. Kelsey, do you know more about her?
Kelsey: No. that’s where I’m at as well. Familiar with the name, but not beyond that.
Eileen: If people are curious, they can just go to TheWork.com. I actually also interviewed her on my podcast, so they can find that episode. But it’s pretty cool. It’s very helpful for me.
Laura: Yeah, definitely. I think in our Paleo Rehab program we do a whole module on emotional health and healing from negative thinking, and trauma, and that kind of thing. Which I mean it’s a very basic skimming of the things that can contribute to HPA axis dysregulation. I feel like with autoimmune disease, I know this wasn’t your experience, but I feel like this actually happens with a lot of people where they have some kind of major stressful event or a traumatic event even and that can trigger the autoimmune disease. Whether or not healing from that is going to 100% solve their symptoms, maybe not. But I do think it sounds like it’s a really important part of the healing journey even if it’s just helping with your mental and not necessarily doing anything from a physical health perspective.
Eileen: Yeah, I absolutely agree with you on that. I’m so glad that you cover that angle. They’ve done research even that childhood adversity can make you more vulnerable to chronic illness. There are things you can do to kind of, if you look it up online, kind of like reversing childhood adversity. I’m trying to think. Donna Jackson Nakazawa is an author who has written a book called Childhood Disrupted. That’s a resource for people.
But if you had a really rough childhood, you aren’t just stuck with the negative consequences of that. There are things you can do even now even if you have autoimmune disease maybe with that being one of the influential factors. There are things you can do to kind of help your nervous system reset now if that makes sense from how it maybe was set to be super sensitive when you were young. We might be getting totally off track now. But anyway, there’s things you can do.
Laura: No, I think it’s important!
Kelsey: It’s great.
Laura: Yeah, it’s really important. I mean like I’ve said, we’ve scratched the surface of this in our Paleo Rehab program where we talk about how your HPA axis gets kind of set to work a certain way when you’re either in your childhood and you experience something negative. I don’t mean for this to be negative, but you can actually have this happen in the womb if your mother experienced something traumatic when she was pregnant. It’s just crazy how far back it can go where even if it’s not something you experienced during your lifetime, if your mother was exposed to stress or trauma during pregnancy, that can affect how your body’s hormonal system works for the rest of your life. It’s crazy.
I mean I think it’s one of those things whether or not you can do anything about it is questionable, but just understanding that some of this stuff is not under your control I think can sometimes take, well it depends on the person I guess, but sometimes it can take some of the stress out of it if you feel like okay, there’s things that I don’t have control over and I don’t have to blame myself for feeling like I overreact to things or I tend to be a more stressed period, it’s my fault, when there might have been some stuff in your earlier life or even before you were born that would affect how you react to things in your current life.
Eileen: Yeah, I think that you’ve touched on two really important things. One is that there are things you can do even if that’s the case. But then the other thing is, yeah, blame is just not healthy at all. A lot of us do that I think probably for anyone who gets any serious diagnosis. But for me it’s like you try and figure out how did this happen to me? What did I do to cause it? That’s kind of a really unhelpful question because there’s so much blame involved and there are a lot of people who have frankly have done a lot more that could cause something and nothing happens. It’s really not as simple as cause and effect. I think sometimes it can help to kind of go back and just see some puzzle pieces fall into place if we can remove all feeling of like blame and shame from that puzzle piece.
Laura: It’s always interesting, I’ll have people ask, I don’t understand why I can’t handle this type of lifestyle, but my friend can or this blogger can. It’s just interesting to see how much either genetics or epigenetics, which is the environment’s effect on your genetics, can affect how you tolerate certain diet and lifestyle habits.
There’s a lot of people out there that develop chronic illness because of let’s say a really stressful work environment that they were in for 10 years or something and there was some kind of traumatic event that triggered the symptoms. Whether or not it would have ever come up without that stress, we don’t know. But I don’t think everyone is going to tolerate stress the same way. Some people really do not thrive in those kind of environments.
If you can nip that in the bud before you get a chronic illness, that’s great. But sometimes it really does take a pretty significant issue developing before people are willing to change their lifestyle. It’s one of those things that it’s almost like you don’t know that it’s a problem until it’s too late almost. But you can make changes now. If you realize that the stress is causing problems, then it’s more about what can you change in your current life than trying to go back and rewrite history or something.
Eileen: Yeah, absolutely. I can’t not have rheumatoid arthritis, but I can have a much better life with rheumatoid arthritis with the things I do to take care of myself than I would have if I’d just gave up and just kind of abused myself. Which some people do. I mean it’s almost a culture to do that.
Laura: I feel like this could be a good transition to a topic that I would love to talk to you about because I think it doesn’t get discussed enough in the alternative health community. When it does get discussed, I feel like there’s a lot of negativity surrounding it. As you’ve shared on your website, you use a combination of both alternative treatments and conventional medicine to manage your rheumatoid arthritis. What made you decide to take a more conventional route to treatment and to maybe rely on the allopathic medicine as an option for improving your overall health?
Eileen: I’m really glad to have this conversation with you because I agree, it doesn’t happen very much. Because I’m someone who thought I would never go on medication, and now I am taking medication, I’ve been through that journey. I’ve been someone who was anti-medication. I was someone who thought that the side effects were worse than the benefits.
Let me start from a personal perspective. For me I did really well with the paleo AIP personalized diet and lifestyle. For a couple of years I was very stable, but I was never in remission. I was honest on my blog from day one that I needed one Aleve tablet twice a day to manage the pain that remained. That’s super low for someone with rheumatoid arthritis, but that meant that the disease was still active in my body. But I called it, it was a whisper where it used to be a scream and it really didn’t interfere with my life very much.
And then a couple of years in as I got a little bit older and my hormones started doing the perimenopausal swings more, I started getting an increase in symptoms again. It wasn’t as bad as it was at onset, but it reminded me of that. I started having those little flares moving around my body. But if it hit my jaw, instead of not being able to open my mouth at all, it was kind of hard to open it and it hurt to open it, things like that. I got nervous when that started happening.
Then I started losing range of motion in my joints and that’s the scariest thing I think for someone with rheumatoid arthritis because that’s where the damage can be permanent. I lost my ability to make a fist with my hands and I lost the ability to lift my left shoulder over my head. That’s when I considered medication for the first time and it was a super hard decision for me. Anyone out there who’s struggling with that decision, there’s this huge resistance to it, there’s this fear about it of what it’s going to do because it is a lifetime medication usually. You do hear all the scare stories about how bad it is for you.
But in the end, although I’m not 25 anymore, I’m still in my 40s. I will hopefully live quite a long time and I don’t want to be losing joints along that way. I went to the doctor, was open to medication for the first time. They did some x-rays to kind of track what was happening and they showed that damage was actively happening and very quickly. I think that’s one thing about my particular RA is it moves very fast when it decides to move. It’s not a slow thing.
I went through a process, I think I’ve been on medication a little over a year now and it was a trial and error journey. I tried different ones before finding one that works. I’m on one now that is working really well. What I encourage anyone who’s going through that is your goal and your rheumatologist’s goal is to help you find a medication that is helping you far more than it hurts. Ideally, I’m in a situation right now where I’m on a medication that I’m not experiencing any negative side effects from. That was something I didn’t even think was possible. But some of the ones I tried in the beginning were unhelpful and harmful. It can go both ways. I think of it kind of like the paleo journey is a big self-experiment figuring out what does and doesn’t work for you and medication can be the same way. There are a lot of different medications you can try, different combinations you can try if you need it to try and find the one that works for you.
And then as we were talking about the emotional part of it, I think really making peace with the decision. I didn’t want to hate taking my medication because I thought that would interfere with its ability to help me. There is something called the nocebo effect. A placebo effect is when something helps you even when it’s not a “real” medication. A nocebo effect is when you block a potential thing from helping you because you refuse to believe it can.
In the beginning I felt like every time I took it I was like I hate this! That wasn’t helpful. I actually went to a facilitator of that of that Byron Katie method of “The Work” and we worked it through and got through all of those fears until I just instead just said every time I took it this is either going to help me or it’s going to teach me. If it teaches me that it’s not good for me, I’ll stop taking it. And if it helps me, I’m so grateful. That was how I approached it and now I have one that’s helping me. And every time I take it, I say I am really grateful for this medication for helping me.
Laura: That’s awesome.
Kelsey: That’s really cool. I was just wondering too, I know this is going to be different for everybody of course, but how long did that process take you from first staring medication to finding one that you felt like really worked for you.
Eileen: It is really different. Some people are wicked lucky. They seriously just get on one and they try it and it’s awesome. They just are like why did I not take that before? And then other people frankly had a worse experience than me that they had such a scary side effect that they never want to touch a medication again.
Mine was less dramatic than that. They started me on Methotrexate, which ironically improved my blood markers and had no impact on my joint pain whatsoever, which isn’t actually all that uncommon. It’s like my blood work looks fabulous, but I still feel really not good.
They tried me on Prednisone, which for me it was unusual. I always thought that was in my back pocket that I could try if I ever did have flares like I had at rheumatoid onset. I learned that it turns out I don’t really get much benefit from Prednisone. That was interesting to find out. I think I metabolize it in a way that it just clears my body very quickly. I got the kind of negative adrenal side effects, but I got minimal anti-inflammatory benefit. I would say Aleve is more powerful for me than Prednisone which is kind of crazy. That’s what I learned whereas other people, they tell them Prednisone makes them feel like super woman. Some people do well on it.
For me the biologics were the category of medication that started doing some good. I tried Humira first and it improved my symptoms, but I was not satisfied with that being enough because I was already doing pretty great before I started medication. So I’d say it only gave me like a 10-20% improvement and I was still having symptoms. They switched me to another one called Cimzia that it’s as close to remission as I’ve ever felt. I’ve been able to go off the Aleve. I don’t need that anymore. It’s not like I never have little sensitive joints here and there, but it’s seriously less than it was when I was medication- free even at my best on paleo. That was really interesting.
The other thing I will say, a lot of times people will say it turns off your immune system so you’re sick all the time. I will say again it’s personal, I think for some people that’s true. They say they’re either in remission and sick, or their autoimmune activity is active. Some people do seem to almost have an on/off switch, but I think that’s more rare.
For me that’s not the case at all. The medication is trying to get rid of the overactive part of my immune system while still letting that core level go. I caught my first cold since getting RA five years ago because that was one silver lining of it never being in remission was it was always keeping everything at bay. I got over it in three weeks without it progressing to anything serious. That was a nice test of my immune system for me. It didn’t cause a flare when I got sick and I also was able to get better, so that tells me my immune system is not shut off.
Laura: I feel like that’s something that there’s all these ads for things like Humira and all these medications on TV and you see all the side effects that they list, which obviously they have to and I’m not saying they’re not serious, but I think people will get really freaked out by those and then they’ll just be 100% opposed to using any sort of medication whatsoever to deal with autoimmunity because they’re scared that it will just cause way worse problems than it solves. Which as you explained before, that might be true for certain medications. But to me it sounds like the medication piece has been a really important part of your overall physical health and healing over the last couple years. Do you agree with that?
Eileen: Absolutely. I will say, some people say why don’t you just go back to eating a standard American diet? I really see that paleo diet and lifestyle as complimentary medicine also and I think one of the reasons why I was able to find a medication that is finally is this successful for me is because I have addressed a lot of the inflammation at its root so the medication doesn’t have to work quite so hard.
I will say my rheumatologist is like blown away every time I come on. He’s just really funny. He’s like I cannot believe that you are taking nothing but this. Because most people, I know a lot of people who take for example a biologic, Methotrexate, and maybe Celebrex, a prescription anti-inflammatory with Prednisone during flares. All of the medications I tried, they still need to take because they’re not doing any diet and lifestyle.
Laura: They’re talking them all at the same time, not just one?
Eileen: Yeah, Prednisone maybe off and on during flares. But the other three all the time. I think that’s the RA cocktail. It’s the most common prescription if someone has a more than just a mild version of the disease. I think people who are milder, they are often still on three medications, but they are different ones. I think it’s Sulfasalazine, Plaquenil, and then an anti-inflammatory. For me it’s just the biologic.
It’s funny that I can talk about this so calmly because I will say I was one of those people, I was so scared and I tried not to be a blogger who spread that kind of fear because I knew enough people in the community who weren’t able to get off their medications that I was already before I needed medication trying to combat that feeling of failure people had.
There was almost like this weird thing that happens in the community where if say someone has RA, goes paleo, and they go into remission, that is awesome. I’m so happy for them. But they’re not superior to someone who goes paleo and doesn’t go into remission. They’re luckier. Maybe whatever is going on in their body, the diet had a much more powerful effect. Maybe their symptoms aren’t as complicated in terms of other factors. Maybe their disease isn’t as aggressive. It changes, it’s a lifetime journey so we may need help at some times and not help at others.
When I went on medication, I actually did a podcast called “Medication Decisions” if people want to find it. I interviewed I think it was five people, some who always took medication and never tried to go off it. There was one women Jamie from Gutsy By Nature, she has Crohn’s and she’s had surgeries and her life has been threatened by her disease. She just said that wasn’t a risk she was willing to take to ever go off it. But she is paleo and it makes her feel better. Then there are other people who have such negative reactions that they’re afraid to go back on, one who’s never needed medication, one who’s gone on and off medication, one who’s found one that works. So different experiences that people share.
But what I thought was interesting, the two people who are not on medication, I thought that they would say they would never take it. But when I asked them that question, they paused and they said, how can I say never? I have a serious illness that could threaten my abilities or my life and nothing is off the table. They’re like right now I’m not talking it because right now I don’t need it. I think that’s the question. It’s like do you need it or do you not? Some people really don’t need it right now. But if you are losing abilities or you’re in excruciating pain, I think it’s worth considering.
Laura: Right. Or there’s also the thought that maybe the medication really is the best option and that may be in autoimmune disease or other illnesses. I know Kelsey and I work with a lot of clients that have small intestinal bacterial overgrowth, or SIBO, and I’ve worked with some people before who just refused to do any sort of antibiotic treatment. There are alternatives, but for some people the antibiotics are really the most effective treatment.
It just stinks when you are working with someone who wants to get better, but they have just totally removed one treatment option off the table. It’s like I definitely understand wanting to do things naturally and wanting to minimize or avoid medication if possible, but at the end of the day like you said sometimes the medication is either the best option or a really important component of your healing that won’t get that same level without it.
Eileen: Yeah. I think that you’re so right what you said in the beginning that medication is so villainized in this community that people are really afraid of it, like of all kinds, the antibiotics too. I’ve known people who have needed surgery and tried to tell their doctors to not give them antibiotics in the hospital. I’m like have you not heard of resistant Staph infections? I mean this is your life. You can rebuild your gut but you can’t come back from the dead if you get struck down by something. Often when you point that out to someone they’re able to see more clearly, but instead they just have “antibiotics – bad” kind of in neon lights in their eyesight. I can see why you do run into that.
I don’t believe everyone should be taking them as overprescribed as they are. But you’re right, there’s times when you need them. I guess I feel the same way about autoimmune medication now. The functional medicine practitioners, the best ones don’t villainized the medication, there’s still a lot out there that do.
Kelsey: Yeah. I think there’s these two things that happen I think when you start to think about medication. I’ve seen this in my own clients, and Laura, I’m sure you’ve seen the same where on the one hand there’s this fear of the negative side effects or negative things about medication. But then like you were talking about before, there’s also this fear of failure or feeling like you are a failure if you have to resort to medications to control a disease that truly I mean you don’t really have much control over. I think that it’s really important to separate those things and recognize them for what they are too. And then think through logically and emotionally think about what emotional factors are holding you back from in terms of how you think about medications.
Because that’s one thing that as a practitioner, I have really tried to educate patients on as much as possible because like I said, I do see a lot of people who whether they’re fearful of side effects or think that it means that they’ve failed if they take medications, either way it’s like Laura said, it’s taking an option off the table that could be a really good choice for them. I hate to see people do that when they haven’t really thought it through logically and emotionally and made that decision from a place of education.
Eileen: I couldn’t agree more. That feeling of failure, you just have to work it through. Because you’re absolutely right, you’re not a failure. I went through that. Absolutely. I’ve always been someone who tries to be pretty transparent on my blog and honest about the journey and so I wanted to go public with this. It was scary in some ways to do. It’s like okay, Phoenix Helix is going to come out saying she’s trying medication. I wasn’t quite sure how the community at large would respond to that. I got hundreds of people commenting saying that they needed medication and they felt like failures and it was so nice to see some voice that it is sometimes needed.
It’s been interesting ever since I’ve gone on medication I would say there are the medication free people out there still, so there are still some people who are. I think like Laura said, maybe it depends on the disease to a certain extent too. But when it comes to something like RA, Crohn’s disease, some of the more aggressive ones, again there are still exceptions where there are medication free people out there, I think they’re really rare frankly.
Laura: Did you get any backlash on your blog when you shared that?
Eileen: Only one out of a zillion comments. I’m a big fan of delete if you’re mean to me. I just don’t put up with that because I just feel like my blog and my community is kind of all about love and support and if you are respectful…one thing that did happen and continues to happen are people who are trying to help me cure myself. And that can be a button for me in terms of an emotional button. It depends on how it’s presented. A lot of people were like have you tried everything from iodine supplementation to bee sting therapy.
Often if it was my reader, and they knew me well, and they were just coming from the heart, I would just reply with frankly after five years, I’ve tried almost everything. Not bee sting therapy by the way, but I looked it up and ironically the research on bee sting therapy says it works for rheumatoid arthritis in conjunction with immunosuppressant medication, but it doesn’t work without. I just thought that was just kind of funny and I don’t want to get stung by bees.
Kelsey: That doesn’t sound very fun.
Eileen: I had one woman tell me if I stopped drinking kombucha, I wouldn’t have rheumatoid arthritis anymore. For her, I just cut her off. You get that. I’ve had one woman email me because she was a spiritually enlightened being who could work with my energy channels and cure me. When I replied to her saying that I have addressed this from a holistic perspective and I’ve had professionals really help me and I feel really grounded, she’s just like, yes, but you haven’t had me, claiming to cure. That’s frustrating. I don’t like those things.
I think anyone with autoimmune disease gets that at some point in their life anyway. It’s just that as a public figure who’s taking medication I get that more often. But only one person got kind of mad and I think he was really afraid. He said oh great role modeling, you’re risking cancer and whatever else and telling people about that. I was just like oh honey, you got to work that through on your own.
Laura: I would think that the response about have you tried this or these are all these things that you could do instead, that’s still coming from a perspective of fear about medication. At the end of the day, if you had said I did bee sting therapy and it is making me feel a lot better, I don’t think anyone would have gotten mad and said you shouldn’t be doing bee sting therapy. Just think, you could…I don’t even know… you could die from a bee sting allergy or something. I just feel like there’s something about medication in the alternative health community that people really are not happy about. Either there’s this fear around it or there’s this assumption that everything can be fixed from a natural perspective.
Eileen: For psychological medication too, right?
Laura: Oh yeah, definitely.
Eileen: There’s so many people who do have major mood improvements by going paleo, which is awesome. I’ve known people who lost all of their panic attacks, anxiety disorder, depression. But other people who don’t just feel like failures if they still need help.
Laura: Right. There’s some medications that I think people are really just overly fearful of. I know autoimmune medication has to be one of them and the antibiotics are definitely some of the bigger ones as well. I was on antibiotics for like 6 to 8 months for Lyme disease back in, gosh I want to say it was like 2011 or 12 or something. It’s funny because I forget how sick I was back then, but the antibiotics were super helpful.
I think that having a fear about medication prevents people from getting the help that they need if they really have started to exhaust all their options. It can be something as simple as using a medication to help your skin if you’re having a lot of acne. Yeah, the diet is going to help, but sometimes you just need a little boost and doing something after you’ve done the research to make sure it’s not something that’s not worth the benefit, like there are some acne medications that increase your risk of IBD, that kind of thing. I don’t know if that’s a great trade off. But if it’s something like autoimmune disease where your day to day life is really being significantly impaired by your symptoms, then the tradeoff of potential chronic issues down the road, it may be worth it to some people.
I think everyone needs to be comfortable making their own decision in that matter and not letting the fear mongering that happens on the internet about medication prevent them from even considering that as an option.
Eileen: I couldn’t agree more. I’ve been through this journey so anyone who is in that fear space, I get it. You can get to the other side. And it’s just like you said, there are times when the benefits outweigh the risks and I think we need to open our minds up to that possibility in this community more often.
Laura: Yeah, I just remember I posted, I forgot exactly what I had posted months ago on my Facebook page about how sometimes medication is the best option for treatment. It was basically about this whole topic where people tend to avoid medication. I just remember getting some responses that are like, this is crazy! Medication is never the right option! It’s just amazing to see how angry people get when you even suggest medication as an option for treatment.
The good news is it sounds like your community is generally supportive and just wants to feel better and is willing to use any means necessary and not going to totally eliminate a certain treatment option just because it’s gotten such a negative halo around it as we might say.
I feel like I don’t know if we intended to talk so much about medication, but Kelsey, I know it’s something that for me a lot of my clients really need to hear this, and I’m sure you’re in the same situation where either there’s fear, or guilt, or I almost wonder if it’s like a pride issue if they feel like I can do this without medication and I don’t need rely on a doctor. At the end of the day, that’s really hindering people’s ability to feel their best and really live a life that is as unencumbered by disease as possible.
Eileen: Yeah, I agree. You’re still going to move forward. If you decide to try medication, you’re still going to move forward doing that with your eyes open and mindfully and do everything you can to help that medication work. If it doesn’t work for you or the side effects are bad, then you definitely can stop taking a medication at any time too.
It sounds maybe strange to some who’s never thought of it, but it can be an empowering journey just like the paleo diet and lifestyle can be. It’s about feeling better and it’s about your own choices. No one’s forcing anything on you, and you get to experiment and see what works, and you can advocate for yourself in the doctor’s office for what you need. It’s all about living the best life possible, like Laura said.
Laura: No one is saying if you do medication that you have to give up on any other options like diet, or lifestyle changes, or supplements, or anything like that.
Laura: It’s just a tool in the toolbox as they say.
Eileen: Exactly. And you’re right that it’s a tool that a lot of us have refused to pick up.
Laura: We’re definitely going to share a couple of the resources you mentioned on the show, especially that “Medication Decisions” podcast. It sounds like that would be a really great one for a lot of our listeners to hear. Is there anywhere else that you’d like our listeners to check you out, either a website or a specific books or anything like that?
Eileen: I think you had them all in the intro, but you can just find me at PhoenixHelix.com. Everything I do is there. My books, my social media, my podcast, so you can find everything there. But you can also find my podcast in the same name wherever you listen.
Laura: Awesome! We really appreciate you coming on, Eileen. I think this was a great discussion that’s going to be very helpful for a lot of people. We’re just really glad to have you as part of the community.
Eileen: Thank you so much! It was an honor to be on.
Laura: Alright. Well, we’ll see everybody here next week!