Episode 8: Dayna Schaaf

Join us as we embark on a series of interviews in search of a diagnosis. Dayna Schaaf is an entrepreneur based in Phoenix, AZ. She started having symptoms a few months ago and has early possible diagnoses of rheumatoid arthritis and/or lupus SLE. What does the search for answers in the invisible chronic illness world look like? How has it affected Dayna’s day-to-day? What about her access to healthcare? How has she found clinicians and community? What are the pitfalls – and the wins – of being on the hunt for a label? And should she allow that label to define her personhood as she gathers information?

Key links mentioned in this episode:

Dayna Schaaf – Live Free With D (@LiveFreeWithD)

Whole30

OrangeTheory Fitness

Sascha Alexander

The John’s Hopkins Lupus Center

Lupus Foundation of America

Sunbasket

Postmates

Dayna’s recommended CBD gummies

Premium Jane

Sunday Scaries

The 4/11 criteria for a clinical lupus SLE diagnosis

Listen in as Dayna shares…

  • how she had an extended “summer flu” before she realized something more was going on
  • that she thought initial physical pain symptoms were related to her favorite workout: boxing
  • how she didn’t start exploring a deeper diagnosis until she found a lump in her armpit – which wasn’t cancerous, but seemed reactive (and which, in classic Dayna style, she has named…Nora the Node)
  • why she recommends you bring a friend or advocate with you to your first mammogram
  • that she has an aversion to doctors because of an early diagnosis of IBS, which she never felt was taken seriously
  • that former guest and autoimmune wellness coach Sascha Alexander is part of her support system
  • why she advocates for keeping a medical history file; Dayna keeps a medical notebook and brings it to every appointment, using it to track symptoms
  • what indicators she has for lupus and for rheumatoid arthritis
  • a detailed analysis of her blood work and x-rays
  • the struggle to adjust her lifestyle as an active person with chronic brain fog, fatigue, and pain
  • why working from home actually delayed her response to her symptoms – although it’s a saving grace that she’s able to dictate her own schedule as she seeks a diagnosis
  • how she has to become deliberate with her time and energy during a flare
  • the rush to meet the deadline to sign up for a comprehensive healthcare plan as she upgraded to cover her needs more effectively – and how much work it was to gather information and make a decision
  • the key piece of advice that got her a doctor’s appointment right away despite a weeks-long waiting list: asking for the doctor’s cash rate
  • that she believes in western medicine and science, but is also aware of her position as a customer in the rubric of American healthcare
  • why she sought a functional/integrative practitioner to treat her symptoms and diagnose her
  • her current doctor’s advice: “don’t get attached to your diagnosis. Just because you don’t have a clinical diagnosis doesn’t mean your symptoms aren’t real.”
  • that, in order to get a clinical lupus SLE diagnosis, patients have to meet four of 11 total criteria
  • her fear that people will think she’s faking it
  • how gratitude journaling has helped her shift her mindset
  • that nobody knows more about your body than you do: so take all advice you receive with a grain of salt, and remember any doctor on your team is a team member – but YOU are the CEO

Dayna Schaaf

Photo courtesy of Casey Withers Media Group/CWMG

Alright guys, thanks so much for joining us today. I am joined today by one of my very best friends, Dayna Schaaf. Dayna and I have known each other too long to mention! Dayna is an entrepreneur. She’s based in Phoenix, Arizona. And if you are looking for her, you can find her on Instagram @LiveFreeWithD… just the letter D.

We’re doing sort of a special episode today. It’s going to be one in a series of episodes with Dayna, because Dayna’s been basically on the journey to finding out what’s going onwith her. So we’re catching her earlier than we catch a lot of our guests who have chronic invisible illness, and using this as a platform to explore what the journey is like, the pitfalls and frustrations — but also the wins. And because Dayna is just so articulate and open about sharing about this stuff. So now I’ve set the bar that high … Dayna, thanks so much for joining us today!

Dayna: Thanks for having me. I’m excited!

Lauren: So let’s start from the very beginning, basics. Tell us when and how you first realized you had something unusual going on health-wise, and what diagnoses you’re looking at right now.

Dayna: Okay. I think to give a background of me … I am super active. I work out every day. I would call myself a gym rat. I’m a workout addict. I was boxingfor several years; and, I’m a high-energy person who is always on the go. I’ve always had multiple jobs, multiple things going on, and yes, very physically active. So the first time that I remember … Oh, and another important note … I hate the doctor. I literally try to avoid the doctor …

Lauren: (laughs) As Dayna’s friend, I can attest that this is true. The number of conversations where I’ve told her, “Go to the doctor!”

Dayna: “Oh, do I have to?!” (laughs) I like to consider myself a pretty healthy person.

Lauren: And you eat healthy as well.

Dayna: Yes, I feel like I eat pretty well. I did Whole30 a few years ago and that kind of kicked me on to eating whole foods, organic. I’m pretty much dairy-free … well, I’m not, I love cheese, but okay …

Lauren: Yeah, it’s not fun to be around when you eat it!

Dayna: I know! (laughs). TMI! We are oversharing!

Lauren: That’s what the point of this podcast is!

Dayna: So, that’s where I’m coming from! So … the first time I remember something kind of being wrong … and I’m not sure whether or not this had anything to do with it … but again I overshare …

I got a divorce. And the summer after I was getting divorced, obviously my stress levels were insanely high … and I only mention that because they say a lot of chronic and autoimmune diseases can start with a high level of stress.

I got this summer flu, is what I was calling it. I was super tired for three weeks, I was achy. My dad was visiting. And he was, like, “Do you have Lyme disease?” My dad has Lyme. And he thinks any time anybody gets sick, they have Lyme. So I was, like, “Dad, I don’t have Lyme disease! Why would I have Lyme?”

Lauren: To be fair I don’t blame him for asking that question. Because you did grow up in Pennsylvania, so it’s very possible that you could have been exposed to it at some point.

Dayna: I’m like, “Watch me have Lyme!”

Lauren: Well, we’re not going there yet! You should probably rule that out, though. I’m just saying.

Dayna: So I had three weeks where I just wasn’t feeling great. And then, whatever. I bounced back. And then a year-and-a-half later … after that three weeks, I started getting weird pain in my shoulders and my wrists … but I thought it was all boxing-related. And it may have been.

Lauren: Well, you went to physical therapy and acupuncture for that, didn’t you?

Dayna: Yep, and it didn’t help really. So I thought it was all boxing-related. And then a year-and-a-half after that, it was Thanksgiving. And I went home, which is in Pennsylvania. So … on a plane, came back, got the flu. I mean, when you travel sometimes that time of year, you’re around people, you get the flu. And I was sick. So sick. I was sick all the way up until I was going home for Christmas. So almost a month, and I …didn’t want to go to the doctor … I finally went to urgent care. My boyfriend was, like, “Get your butt to urgent care!” So I go to urgent care and they say, “Okay, well, we’ll give you a steroid shot in your butt just to increase your –”

Lauren: That always makes you feel fabulous when someone offers you a shot in the butt!

Dayna: Thanks, guys! Yeah! Oh, hold my pants down. Shoot me in the butt.

Lauren: You’re lucky they let you pull your pants down! That once happened to me in Italy and they did not even let me pull my pants down!

Dayna: Through your clothes?!

Lauren: Well, through my tights! I was in Sicily and I couldn’t figure out what was going on … and yeah, anyway … love you,Italy! That was just a weird experience!

Dayna: Mamma mia!

Lauren: Mamma mia, indeed!

Dayna:So then I felt a little better. I went home, but I never really kicked the flu. And when I say I had the flu, I definitely had flu-like symptoms. I got a runny nose; I hada fever, chills. But I was also extremely tired, like you are with the flu. And achy, and all the things … And so it didn’t really go away. It definitely got better over the holidays, but it came back and I continued to be sick. I was literally sick all of January, all of February. And I would get better — and then really crash and get worse. And there was also a really bad flu going around — this was last winter. Remember how everybody was getting the flu? And it was super bad. So I just thought I had the flu. But my boyfriend was, like, “Dude, this is not normal.” Well, he didn’t call me dude, because he doesn’t …

Lauren: Well, but the rest of us had also just gotten used to you getting the flu at some point in the year, and then being sick for six months — which was not normal.

Dayna: Not normal. And yeah, he was, like, “Maybe you should go to a doctor.” And that’s actually when I called you and you sent me to your primary care doctor that you had liked at UCLA. This is when I was still living in Los Angeles. So I went to UCLA, and she ran a bunch of blood work.

She tested me for mono, she did a test for Lyme and a couple of other things — and everything came back normal. Except my iron was really low. So she told me, “You’re really severely anemic. This is why you’re so tired.” I couldn’t stay awake for more than a few hours at a time.

Of course, I was still pushing myself. I was still going to the gym. And then I would come home and be, like, “I’m just going to take a little nap.”

I would think I was going to nap for 20 minutes — and I would wake up three hours later.

Lauren: Welcome to my life. This has also been a common theme of our friendship … yoga pants and napping are two of our favorite things!

Dayna: And also, I think I love to nap in my real life. Even when I’m not feeling sick, I love to take a 20-, 30-minute nap. I call that my superpower. I love napping. I can sleep anywhere.

Lauren: I love that you also just referred to your life as your real life. Like, it’s all your real life!

Dayna: You’re right. In my healthy life, when I’m not feeling sick. I call it my superpower. And so, you know, it wasn’t triggering for me as something that was not normal. So the doctor was, like, “Hey, look, your iron’s very low. Good news is, it’s really easy to treat. We’re just going to give you some iron supplements.” So she did. And boom, I started feeling better. Great. So I start on iron supplements, I start feeling better.

And about two months later, I notice that I get a lump in my left armpit — and it doesn’t go away.

And so I’m, like, ‘Ugh, I don’t want to go to another doctor! So I’ll just wait until I see her for my follow-up blood work.’ And we do my follow-up blood work, my iron levels are normal, I tell her about the lump, and she’s, like, “That’s worrisome. We should send you to get a mammogram ASAP.” And also in that time, I moved to Phoenix. So, now: new city, new doctors, new everything. So I find a new ob/gyn. They send me for a mammogram, and I’m, like, ‘It’ll be fine’. So I go and get a mammogram, and they do the whole thing, and an ultrasound, and…

…if you get a mammogram, bring a friend, I didn’t bring a friend and that was so silly. I should have. I know that you talk all the time about having an advocate and somebody with you; I should have brought my boyfriend, or a friend or somebody, and I didn’t. And it was scary.

Lauren: But one of the other things that we definitely did do was talk about it beforehand. Because I’m someone who’s had a biopsy, I said, “Here are all the things that you can expect for a biopsy or a mammogram.” So it’s great, in those situations, to reach out to friends who have been through similar or the same things, and ask them, “What should I expect?” Just so you know.

Dayna: Yeah, and that did help a lot. But then, the technicians — they’re not doctors, so they say, “Just sit in this chair by yourself and let me run these by the doctor.”

Lauren: It’s awful. The waiting is awful.

Dayna: It’s so scary! But then they tell you, “Okay, there’s no breast cancer.”  Thank God! But they also said, “This looks reactive. You should go see a primary care doctor.” So I go in and I see a new doctor who I’d never seen before. And, you know, propsto the doctor. He started asking me about my whole medical history.

And I wrote down a few things … I have polycystic ovaries. And that I had been, I’m gonna say, casually diagnosed with irritable bowel syndrome — which is probably part of my aversion to doctors. Because I had a lot of stomach discomfort in my early ‘20s. And I felt like when I would go to see doctors, they were either not taking me seriously or talking down to me, or they’d just say, “Just don’t eat dairy.”

Lauren: And it’s never that simple with something like IBS. We actually have an episode that’s going to be all about IBS … but it’s one of those diagnoses that seems to be a bit of a catch-all for anyone with digestive issues. And sometimes it’s never that … it’s always never that simple. So it’s very interesting that that’s caused some of your aversions to going to the doctor — and it makes total sense.

Dayna: So there you go. So he’s asking me things, and he was, like, “Are you achy?” And I was, like, “I am kind of achy.” My wrists were a little achy, and my ankles. But at this point, I had been doing Orange Theory Fitness, and I said, ‘Maybe I’m just sore, you know.’ I’m just going to throw this in there … and I’m probably going to stir the pot …

I had gotten my flu shot two days before this appointment. Let me just stir that pot really quickly.

Lauren: Well, it’s interesting to note that Dayna is not an anti-vaxxer.

Dayna: I’m not at all.

Lauren: But it’s interesting because I’m someone who has often put off getting the flu shot because I always get a little sick when I get it. Because, one of the things that we’ve talked about in previous episodes is: when you get an immunization of any kind, you have to remember that you’re giving yourself a small amount of whatever that particular disease is in order to build the antibodies so that you can fight it. It gives you a superpower. But at the same time, sometimes you can get a little symptomatic for a couple of days. So you were having those symptoms — but it doesn’t change the fact that you had had those symptoms anyway.

Dayna: Right. They had been coming and going. So anyway, he said, “Okay, well, I’m going to run a bunch of blood work.” And they ran a bunch of blood work. Although he was thorough…not the best bedside manner. That’s okay, though, because I had a great support system. I had you, I have my sister who’s a nurse, and I had Sascha Alexander. Sascha has been on this show; Sascha is my writing partner, and so we were talking a ton anyway. And that group was kind of helping me navigate. So we ran all that blood work, and they came back to me and said…

“You know, we see a few markers in your blood for some autoimmune diseases. We want to send you for X-rays to rule out or confirm rheumatoid arthritis. And then we want to do some more blood work. Do you have any history of autoimmune disease in your family?” And you know, I do. And nobody really talked about it!

Lauren: Boom. Boom, boom, boom!

Dayna Schaaf Lauren Freedman

Dayna: I was, like, “What?!” My grandmother has rheumatoid arthritis. No one has ever mentioned that in the history of my family. And, you know, my dad’s sister actually made a comprehensive medical history, and it’s in a Word document.

Lauren: That is so great!

Dayna: It’s so amazing.

And I just want to say, if you’re pulling all this stuff together for yourself, if you’re a person who’s starting to gather your family medical history, put it in a Word document because … wow. And that was such great advice from you, Lauren, to write everything down in a Word document and print it out when you go to the doctor — so you don’t have to re-live it every time, writing it out.

And so I had this comprehensive medical history from my dad’s side. And then when I went digging in my mom’s side, I found that I have a very direct maternal link… my aunt has scleroderma and Sjögren’s (such a weird one and spelled weird). And then my grandma has rheumatoid arthritis. So I was, like, ‘Oh, I do have a family history.’ So they ran more blood work and it came back. And as my blood work was coming in, I was going over it with my sister.

So when my doctor called, this was literally how the call went…he called and was, like, “Hello, Dayna. Um. We think you have lupus.”

Lauren: Whoa …whoa.

Dayna: Yeah. But let me back it up and say … I was prepared for that call because I had been looking at all of the blood work with my sister as they were coming in and popping up on my electronic medical chart. We were going through them and she said, “D, you have a lot of the markers for lupus. That might be what they’re going to tell you.” And so that’s what they said. And then they sent me to a rheumatologist. So … do you want to talk about the blood work?

Lauren: Yes, I’d love to know because one of my questions is actually: What tests have you taken so far to determine the first diagnosis? And what further tests have you got scheduled to explore alternate diagnoses with your physician? So this is all part of the discussion, and I’d love to know: What tests you’ve taken, and what tests you’ll be taking!

Dayna: I’ll do my best!

Lauren: Just to sum up, right now we’re looking at something that’s possibly RA (rheumatoid arthritis), possibly lupus.

Dayna: Right. Again, I’m two months into this process at this point, so this is all very new for me. It was a steep learning curve. Thank God, I had my sister. You know, the Internet is a scary, but can be helpful, place.

I was just making sure to get my information from what I felt were credible sources — like Johns Hopkins and the Lupus Foundation, and reading up on this stuff there.

What they first ran on me was a bunch of blood work, and what came back positive — that gave them a moment to pause — was my ANA (antinuclear antibodies). And from what I understand, that’s when your body makes antinuclear — so,opposite antibodies. And those attack your body; they are recognizing your body tissue as the threat. Again, from what I understand, there’s a bunch of different antinuclear antibodies, and depending on which ones you have can help narrow down or confirm or support a diagnosis.

Lauren: Yes. And this is across all autoimmune diagnosesas far as I know. The whole concept behind an autoimmune disease is that your antibodies are recognizing normal tissue as diseased tissue, and attacking it. And that’s what causes the problem. So, as you’re saying with lupus, it’s going to be something specific to lupus. With something like I have, Hashimoto’s, it’s going to be specific to my thyroid, etc.

Dayna: Correct. And they did run a thyroid panel on me, although it was just a basic one. And all of that came back normal, and I know things you’ve said about the thyroid stuff  — because I listen to this show! — and we’re moving down that path. And the other thing that pinged was my rheumatoid factor. My rheumatoid factor was high, and my ANAs came back positive in the first test, so they sent me for X-rays. Rheumatoid arthritis can leave these kind of interesting patterns in your joints that look like old fossils … if you’ve seen a rock that’s been worn away at the beach, and it has all those little pits and craters in it. So they sent me for X-rays for that, and then they ran more blood work. My X-rays came back looking good, and my blood work came back and there are a few antibodies that can be, I guess, markers for lupus. One of the biggest ones is your dsDNA. And that came back positive for me. I wrote down some statistics as I was doing this research. Thirty percent of people who have lupus will have dsDNA antibodies, and it’s a good indicator because less than one percent of the healthy population will have that marker. So pretty much if you have that, you have something going on. But it doesn’t necessarily mean that it’s lupus.

It’s a really blurry picture right now. And you gather all these little bits of information, and the picture starts to get clearer and clearer.

Lauren: And that’s been one of the pieces of advice that I keep repeating with you, too … all you have to do right now is gather information. Whenever you’ve gotten stressed about stuff, I’ve been, like, “Your only job right now is research.” And it’s so hard, and we’re going to definitely get into all of these feelings and the anxiety and everything. Whenever Dayna texts me: “Oh my God, this is stressing me out!!”, I just say: “You have one job right now. Do your one job, which is just gathering information.” Sometimes just stepping back and looking at the bigger picture in that way … gives you a minute to take a breath.

Dayna: Yeah, that is really good advice. Because also during this whole time, I’m feeling terrible — which we’ll get to in a second. And then they test for a couple of other ones … they call them anti-Smith and anti-Ro anti-La. None of those showed up for me. And then they also test your blood serum complements. You have several; they test your C3 and your C4. My C3 was normal but barely, and my C4 was low but barely. So I was borderline on those. And those, specifically the C4, are also like a lupus checkmark is what I’m calling it. I don’t want to say an indicator. In order to get a diagnosis, you have to basically have enough checkmarks in a column.

Lauren: Also, a lot of these numbers could also be indicating that you’re catching whatever you’re catching early.

Dayna: Yes, exactly. And that’s what my primary care doctor said. He was, like, “Look, here’s the good news. You live a really healthy lifestyle. And so probably a lot of this has been mitigated by the fact that you don’t eat a lot of inflammatory foods.” And they also tested C-reactive protein, which shows that there’s inflammation going on in your body.

I have this lymph node. I’ve nicknamed her Nora … Nora, the Node.

Lauren: (laughs) That’s right, that’s my girl!

Dayna: So, Nora’s there so obviously there’s some inflammation that I can see. A lot of times, inflammation in your body you can’t see, right? But now I can feel it in my joints and I have Nora. So that’s how all that blood work came back, and the doctor said, “You know, we might have mitigated a lot of this because we’re probably catching it really early. None of this is off the charts. It’s definitely abnormal. But none of it is off the charts.”

So meanwhile, I’m feeling terrible. I’ve never felt this bad in my life. My joints are aching. I’ve heard people say, with chronic illness and fatigue and pain, you can’t describe it really until you’ve experienced it. And that’s so true. I think I am a person who has a high pain tolerance, and this pain is just so different. It’s so pervasive, and for me it feels like deep aching and pulsing in my joints.

Lauren: You also described to me at one point that it felt like your skin was on fire, right?

Dayna: Yeah, my skin was sensitive. If the fan was on, even low, or the air conditioning was on … cold of any kind, but especially if cold air was blowing on me … it hurt my skin. And I was just so tired. And I have to just say it again … tired doesn’t even really describe it. I would get up in the morning. I have two dogs and would walk the dogs. I would maybe do one thing, like laundry, or load the dishwasher. And then I’d have to sit down and literally take a rest … and then maybe I could do one other thing, like sit at my computer and do something for work. And then I would be on my couch napping for the rest of the day. It was really hard for me because I am such an active person; I was, like, ‘Get over it, Dayna. You just have the flu. Get moving. Go to the gym, do this, do that.’ And also, I would wake up feeling like, ‘Okay, today is going to be a good day!’ And then I would crash so fast.

It was also like a mental game of just every day waking up and being, like, ‘Am I going to feel better today? Am I going to feel better today?’ Because when you have the flu, you know, more or less, okay, in three to seven days, I’m going to feel better. So I’m just going to suck it up for these couple of days and it’ll be fine. And this just felt like it was going on and on, and I didn’t know if there was going to be an end in sight.

Lauren: And one of the things we talked about, prepping for this interview, was that you work from home. And I’m wondering how much that structure either impaired or improved your ability to notice and control your symptoms. Because you’re on your own schedule.

Dayna: Yeah, that’s interesting. I have a partner and it’s nice that he’s able to give me feedback on, like, “Yeah, you’ve seemed normal,” or, “You know, you haven’t seemednormal.” And there have been periods of time when I have slept a lot more or napped longer. And luckily, because I work from home, I guess it was harder to notice that that was an abnormal phase that I was going through — just because, if I needed to nap, I could. It wasn’t like I had to take time off work, or I only had a lunch break to nap. I could make my own schedule. So that probably made it a little more difficult to recognize what was going on with me. But at the same time, maybe because I was able to just listen to my body and be, like, ‘I need to nap right now’ … maybe that helped my symptoms improve quicker. I don’t know. So I think there’s a plus and a minus there.

I certainly know that when I was feeling really bad, and would have what I now would refer to as a flare … when I was flaring really hard, I couldn’t imagine having to work. I couldn’t imagine having to be around people, having to get up, get dressed. At one point, I tried to go grocery shopping and I literally couldn’t.

My boyfriend had to drive us there. I insisted on going. I held on to the shopping cart and he just did everything … and I just followed around like a little toddler. And then crashed and burned for the rest of the day. That was rough.

And then the other part that comes with it is this brain fog … this brain fog and this crushing depression. Fortunately or unfortunately, I have been through bouts of depression in my life, so I know how to recognize when it’s happening. And I was just bursting into tears for no reason, I was feeling really down, all the classic stuff.

Lauren: It’s not exactly bursting into tears for no reason.

Dayna: No, I know. I’m just saying it felt like that at the time. I was, like, ‘Why am I crying?’

Lauren: Because my body’s not cooperating is why I’m crying! You know, it makes sense.

Dayna: I just thought I was having a sad day at first, and then it wouldn’t pass.

Lauren: But this is also very common in these situations: that patients are going to end up with some kind of circumstantial depression and/or anxiety. I certainly did, too, because when your body is suddenly not doing the things that you expect it to do on a regular basis, and you can’t even rely on yourself, of course you start to spiral down.

Dayna: Yes to that. But I also think it was part of the flare, like symptomatic almost. And I say that only because I’m a month removed from that flare. And, you know, depression doesn’t just go away. And it kind of did, you know … it lifted. And the brain fog … gosh, it was so hard.

I couldn’t do things, I couldn’t think about how to do anything, to pay bills. And then at the same time, I’m trying to have phone calls with doctors, and research blood things, and what do all these tests mean. That’s hard when you’re feeling great; it was really hard when you’re feeling so foggy.

Lauren: Well, we did try to make it fun in some ways … we started taking bets on what diagnosis you’d get this week or that week. We had to turn it into a bit of a game, because Dayna loves charts and Dayna loves organization. And so, as her friend, being able to provide that support, it was, “Okay, so let’s make this a fun game.” I think it helped you be less afraid of what the news would be. Plus, you also geek out on the science of all this stuff.

Dayna: True.

Lauren: You’re a ‘knowledge is power’ person, so gathering information and … she’s got a little notebook that she’s showing us right now …!

Dayna: It’s my medical notebook.

Lauren: Yeah! And you can bring that with you to every appointment and it gives a doctor data from which to pull their diagnosis and information.

Dayna: Yeah, exactly. So that’s what I was trying to do, trying to write down what I was eating. And I’m just laughing because this day, it was: wake up, have a phone call, take a nap.

Lauren: Have a phone call, take a nap – amazing.Because I was actually just going to ask you, what does a typical day look like for you when you’re having a flare, and when you’re not having a flare?

Dayna: I don’t totally know yet. When I’m not having a flare, my typical day is: wake up, I have a cup of coffee, I walk my dogs, I work for three or four hours. I work from home; it’s mostly at my computer. I’ll eat a pretty big breakfast; I’m always really hungry in the morning. And then I go to the gym and I work out, something high-intensity — usually Orange Theory or boxing, or sometimes I do Pilates. I tried to do yoga but you know, guys, it’s not high-intensity enough for me!! And oh my God, the message boards are going to blow up. People are gonna be, like, “Try Bikram yoga! Do this pose!”

Lauren: (laughs) She doesn’t like yoga, guys!

Dayna: I’m just not a yoga person! I’m just not! And then, I’ll run errands in the afternoon, come home, maybe do another hour of work. Honestly, the problem for me is shutting off at night; at 5 or 6 o’clock, I usually have to tell myself, ‘Stop working. Stop bustling around and doing things.’ Cook dinner; I love to cook. I’ll cook dinner from 6 to 7, we’ll eat dinner, watch a TV show, do whatever … and then in bed by 10, asleep by 11. That’s a normal day in the life of Dayna.

Here’s a day in the life of me when I’m sick: Wake up, walk the dogs, sit on the couch all day, nap 2 to 5pm.

That was one of my days. Sometimes I had to do things, like run errands or do something that I had already planned. This was also over Thanksgiving that all this was happening. And so, you know … I don’t know, I try to do the best I can.

When I was flaring, I think a normal day was like: Wake up, and I knew I had max three hours until I started to crash — and so I would really have to pick: What are the most important things that I have to get done today?

And sometimes that was grocery shopping, because you have to eat. And sometimes it was something for work. And sometimes it was something social where I had to interact with other people. But I could really only pick one, maybe two things that I could get done in a day. And by about noon, 11 or 12, I knew that was going to be it. And then I just had to plan that I was going to be on the couch for the afternoon, and then maybe I could cook dinner — maybe not. I have been utilizing a meal service like Sunbasket and that makes it really easy to cook. But sometimes even that was just not possible. Luckily we live in a world where you can order Postmates and there’s some really great healthy options.

I think that what I have learned is that when I am not feeling well and in a flare, the more stuff you can take off your plate … self-care, you know, to take care of yourself, but it doesn’t cost you energy … the better. So, yes, maybe ordering food out more, or batch cooking something in a slow cooker so you can cook one day and eat for a couple of days.

And I had to just ask my partner to pick up the slack, and he did — he cooked, or he did laundry, or whatever. Some days were better than other days. One thing that I found that helped me,weirdly… ibuprofen didn’t touch the pain at all. And because this was the first time, icing helped. And weirdly, we had these CBD gummies that we were trying actually for anxiety; we had them in the house and knew that that could maybe help with pain. And that actually would just take the edge off the pain. And so taking that as soon as I started to feel like I was crashing — that really helped.

Lauren: I don’t think that’s odd at all; I think that’s becoming more and more popular. And, in fact, I use CBD because  — in terms of the pain that I experience now that my symptoms are so much more under control — when I have pain, it’s usually just period pain. So I’m very lucky that way because my diseases don’t cause me a ton of pain like you’ve been experiencing. Nothing similar to that, but when I have really bad period pain, I do CBD gummies and maybe a little CBD vape, and it helps tremendously. So if you find the right combo of stuff, I think it’s great. And I’d rather take that than ibuprofen, frankly.

Dayna: Yeah, same. Unfortunately, we don’t have a tub in this apartment, which is a big bummer because I’d love to take baths. I did that a lot when I had that four month-long flu …who has a four-month long flu??

Lauren: You do!

Dayna: Now that I say it … that is absurd.

Lauren: Yeah, that’s the thing. You let yourself have a four-month flu, but it was really the earlier stages of the whole process.

Dayna: I took a lot of baths during that time, and it was really super helpful.

Lauren: So what other steps have you started taking, to take control of your health?

Dayna: So my primary care doctor obviously wanted to refer me to a rheumatologist … and just to throw a huge wrench in the works, and I’m sure we’re going to just go off on this … I had to pick a new health care plan.

Lauren: Perfect, because my next question was about health care.

Dayna: Remember, I said I consider myself a healthy person. So I was just on a health care plan that was very basic — and, I felt, still expensive. I’m just going to overshare and say: I was paying $240 a month and I was, like, ‘I never go to the doctor; this is useless!’

But I quickly realized I had a very high deductible, and with all these tests and everything, whoa man – like whammy on the wallet! And so I quickly realized that I needed a better health care plan.

The way that healthcare works is you have to decide by December 15. So all of this is happening in November. Rheumatologists are, I guess, really hard to get in to. My primary care doctor referred me to one in his little hospital network, but it was a two- or three-week waiting period. So I had an appointment with that one, and then at the same time I started asking my network and I got a referral to another doctor who works at a different hospital. And she is a DO.

Lauren: That’s an osteopath, for those who don’t know.

Dayna: Yes. And so I had heard through a friend of a friend who sees her, also a 35-year-old woman with lupus, that she had a more integrative approach. And so I really wanted to see her because I knew from talking to you, Lauren, and from talking to Sascha and other friends, that finding a functional or integrative practitioner is really helpful when you’re dealing with something like this.

Because there is a lot you can do that is not just medicating. And I wanted to pursue that; I felt like I wanted to be in control of this story a little bit, and I wanted to see what part I could do.

So…oh my God, I can’t even really get into that whole story. It was just so much work, going back and forth calling them … they wouldn’t call me back … calling them … they wouldn’t call me back …pushing … “Oh, she’s not taking any new patients. Okay. We’ll squeeze you in. Oh, okay. We need a referral.” Back and forth …

Lauren: What was the piece of advice I gave you that got you an appointment right away?

Dayna: I can’t remember!

Lauren: “What’s your cash rate?”

Dayna: Oh yeah.

Lauren: That’s basically a huge one. Dayna would text me every day and give me the updates. And one day I got a flood of texts … “I can’t get in to see a doctor. No one. I’m sitting here feeling sick and feeling crappy. And I can’t get in to see anyone. What am I supposed to do?” And I told you, “You call that doctor right back, and you ask them what their cash rate is.” Because sometimes these doctors may have a full schedule, but if you pay them cash, they’ll be able to see you sooner or they’ll make an effort to fit you into the books sooner.

Dayna: Yeah, so I did that. And they still needed a referral from my primary. So I made two appointments, and they happened to just be five days apart.

Dayna Schaaf Lauren Freedman

Lauren: Meanwhile, we’re ticking down to the December 15 deadline.

Dayna: And maybe December 6 and 11, or something, were my appointments. So I see the first doctor and she’s in the same health network as my primary care. I walk in and she has my whole chart … and actually it’s not the rheumatologist, it’s his nurse practitioner. So she’s, like, “Look, you have lupus. It’s probably early. Nothing’s super-elevated. But here’s how we treat it: We treat it with this drug called Plaquenil.” And I had done a lot of research on Plaquenil and talked to my sister a bunch about it.

And I, you know, am very much of the mindset that Western medicine is not the devil. I believe in science. But I also think that it is a business, and so I am mindful that they look at me a little bit as a customer. And so I appreciate that the medication is there, but I don’t like to take medication if I don’t have to. And especially if there’s not something else that I can do.

However, from what I had read and researched and talked to my sister about, with Plaquenil it seemed like the benefits outweighed the risks. The biggest risk with Plaquenil is that there can be a build-up in your retina and it can start to cause blindness. But again, from what I’ve read, if that happens … and it’s rare, it happens to one in 5,000 people … it’s trackable. Obviously you see an ophthalmologist and if it happens, then you can stop taking the medication and the deposits will naturally go away.

Lauren: Oh, that’s great. So it is reversible?

Dayna: It’s reversible. So I felt like, ‘Okay, that’s fine.’ And she said, “Look, we’re going to start you on a low dose of this,” and she actually gave me some great advice … she said, “Look, don’t let your life be determined by having lupus.” Because I was asking her, “Can I still work out? Can I do that?” And she was, like, “Yeah, if it feels good, do it; if it doesn’t, don’t.” And I was, like, “Okay …”  I’m making her sound really great, and she was fine.

But I did feel … she just looked at my chart; she didn’t examine me. She didn’t ask me my medical history. She just kind of opened the book, “You have lupus,” closed it, and was, like, “Here’s how we want to treat you.” So she called in some medication for me. And I didn’t start taking it because I wanted to see the second doctor.

Lauren: Good for you! I would have done the same thing.

Dayna: So we went on a three-day vacation and we came home early from it to see this other doctor, this DO. We walked in, and long story short, they wouldn’t let me see her that day because the first hospital or the first doctor, my primary care, hadn’t sent a referral over, or they hadn’t gotten it or something.

Lauren: Oh my God, and you’d come back early from a vacation for this.

Dayna: Yes, it was very frustrating! And I was, like, “Look, I’m on a deadline. I need to make a decision about health care by Saturday.” So they squeezed me in on a Thursday. And this is only important, because I just want you guys to know … when you’re deciding on health care, there’s a lot to look at. Like Lauren said, I’m organized. I made a spreadsheet. I was looking at, like, eight different health care plans, trying to figure out what the best one was. And unfortunately one doctor was on one healthcare, and one doctor was on the other. So my health insurance plan was going to kind of decide whom I was going to see. But I said, ‘I’m going to see what doctor I resonate with. And that’s how I’m going to pick which insurance I go with.’ So then I go to see this doctor, and I will just say her resident comes in and spends easily 30 minutes with me asking me a million questions.

Lauren: Which is so unusual. If you get a doctor who spends more than 15 minutes with you — because that’s the standard visit time — then this is good.

Dayna: They’ve already squeezed me in, but they’re not making me feel like they’re rushing me. So she comes in, she asks me a gazillion questions and then says, “Okay, Dr. Chhaya will be right in.” So then she leaves, and in breezes beautiful, young,vibrant Dr. Chhaya who I just love — and immediately I decide. Which may or may not be the best way to make a judgment on a doctor, but listen … I liked her is all I can say; I liked both of them. And she goes, “So can I see that lymph node?” And I was, like, Whoa!

Lauren: That’s great!

Dayna:  Nobody has asked to see the lymph node! Let’s get Nora out!

Lauren: (laughs) Nora the node!

Dayna: So she … what do they call it … palpates it?

Lauren: Yeah, she presses it.

Dayna: She touches it a little and she says, “Look, it’s a little tender; it’s not hard. Basically it doesn’t look like cancer, and your mammogram also says that it’s not cancer. But, it’s weird.” And I was, like, “It isweird.” “And you have some interesting blood work,” that’s what she said. And her piece of advice for me, which I found helpful at the time (and I feel a little more frustrated with now), was: “Listen. What I see with you, what’s going on here … this can sometimes be very difficult to diagnose — and to get a clinical lupus diagnosis, you have to fit 4 of 11 criteria…” And I have them written down for you, so I will tell you what those are …

Lauren: She’s is getting out her notebook again, guys. She loves her notebook!

Dayna: I do. “11 Signs of Lupus”… So, the malar rash, which I do not have; and other than my skin hurting, I haven’t had that, or the discoid rash either. I haven’t had any skin symptoms. And I also don’t think I’ve had photosensitivity. I did notice that I would be more tired in the sun, but I didn’t feel comfortable saying that was a symptom. So that’s three …malar, discoid rash, photo sensitivity.  Oral ulcers… I haven’t had any of those. Number five is arthritis-like symptoms …yes, I have those. Serositis…it’s inflammation of your lungs or your heart. I guess there’s really no way to know that I have that because they haven’t done any scans. But your symptoms would be shortness of breath — feeling like you can’t take a breath, having to take shallow breaths — and I haven’t had any of that. Kidney disorder — having protein in your urine — and they had tested my urine, and my kidneys looked fine. So I didn’t have that one. So that was seven. Neurological disorders … depression, anxiety. I did feel like I have that. But as you guys probably all know, that’s one that’s a little more a….quality?

Lauren: Yeah, well, I think a lot of people wouldn’t consider it a neurological disorder. I think the way we think about neurological disorders in a traditional Western medical frame is more when it’s something like Lyme where you’re having muscle spasms that you can’t control. Or something like MS, where you can’t control the movement of a limb or something like that. I can see why someone might not think that they had a neurological symptom when they just have depression and anxiety.

Dayna: They list that on the lupus website … depression and brain fog are listed under neurological disorders.

Lauren: So you have two of them so far …

Dayna: Yes, two … too far! The next … nine …is a blood disorder. So anemia does fall in there. And I was anemic, although I’m currently not, but I’ve been taking iron. So I have since stopped because I want to see where my blood naturally is without the supplements. And then immunologic. So that is all those blood tests that I told you about earlier.

Lauren: Your ANAs …

Dayna: dsDNA …yes, I’m all of that. And also that your ANA is positive.

Lauren: You’ve got five of them now?

Dayna: Right. So I felt like: check, check, check. But she said, “Look, I want to run some more blood work.”

And her piece of advice was: “Don’t get too attached to the name of your disease or sickness. Don’t get too attached to having a diagnosis. Just because you don’t have a clinical diagnosis doesn’t mean that your symptoms aren’t real.”

And I thought that was …

Lauren: That’s very caring.

Dayna: Really profound. And she said, “Whether or not you come back as a clinical, classic case of lupus or not — it might be early. It might not be lupus, it might be. I’m probably going to treat you the same way with this drug called Plaquenil.” And I was, like, “I know all about Plaquenil!” So she said, “Okay, let’s run some blood work.” It is worth noting, by this time I’m feeling much better, like 80% better.

Lauren: And that’s largely because whatever flare you were having had probably subsided.

Dayna: Yes, and I hadn’t taken any medication. It just had naturally subsided, or run its course, I guess. And the last blood work that I’d had was right in the middle of the flare. She wanted to run some new blood work. And I had decided, I like her and I picked the medical plan to go with her. And then it’s the holidays, and I’m leaving. And my blood tests are trickling in online, and I’m looking at them, and by now I’m pretty much a professional …

Lauren: You can professionally read them, yeah!

Dayna: And I’m, like: This is weird. Everything’s normal. Everything is back to normal, except my rheumatoid factor is still high.

Lauren: This is when the pendulum swung back the other way to RA again.

Dayna: I just want to say, I panicked. I was really freaked out. I texted you, I texted a lot of people. I was, like, “Oh, my God, my blood looks normal. This isn’t normal.”

I had latched on to the idea, and still have latched on to the idea, of having a diagnosis, of having lupus. I was wrong.

Lauren: Yeah. And let me pause you really quickly to say —because this has come up in previous interviews — that having a diagnosis, having a word that you can put on the symptoms that you’re having is incredibly empowering and freeing. And you’re having the opposite experience — which is that a doctor has said to you, and warned you: “Hey, don’t get too attached to this diagnosis.” And it’s very kind that she said, ‘Your symptoms are real.’ But it would probably make your life and your mental state a lot smoother if you were able to say I have … insert disease here … And part of that is for yourself. But part of it is also when you’re telling other people. Because that’s something I want to talk about as well … you said you were going home for the holidays. So here we are in a situation with family and close family friends, where you’re saying, “I think I’m sick. I’m not sure if I’m sick.” Did people believe you?

Dayna: All love to my family … they joke that I am very dramatic, and I am. I’m an actor, and I tend to be very animated about things. But I have this fear that people will think I’m faking it, that I will fake being sick. You know, like all kids … we faked being sick when we were little to get out of things.

But I just still have this fear that people will think that I’m faking it.

And so, when I first got sick … and I think that people mean well … but I would say, “Hey, this is how I’m feeling, and they ran blood work and it’s showing that I potentially have an autoimmune disease …”  And people would immediately say, “Well, it’s probably not that. Have you thought about allergies? Do you think that it could be …”  And they mean well …

Lauren: (laughs) I’m sorry I’m laughing! It’s just, to me, so comic that people are, like, ‘Oh, I’ve got better ideas than the medical establishment.’

Dayna: Even my family that are in the medical field, you know?! I don’t know if anybody else has the same feeling, but when my ANA came back positive – 30% of the population has a positive ANA and they’re totally healthy. I think that statistic is right. But there’s a certain percent. So, you know, the first thing that everybody said was, “Don’t worry, it’s probably not that.” And I think that’s really interesting because actually, it’s not that 70% of the population has a positive ANA and is healthy, it’s the minority — 30%. So I felt personally when people would tell me that, that they were kind of discounting how I was feeling. Also discounting how scary it is to be, like, “Okay, well, 70% chance that you do have something and 30% chance that you don’t; you probably don’t, you probably don’t. It’s probably this. Is it Lyme?”

Lauren: This can be a very condescending experience when loved ones are, like: Well, it’s not the thing you’re telling me it is. They’re reinforcing your belief that someone’s going to think you’re faking it.

Dayna: Yeah. And so then as things started coming in, and it was, like, “Yes, this is positive …”

And I also think, as a loved one of somebody who you know is going through this process, I think it’s part of the acceptance process; you don’t want your loved one to be sick. So I think that it’s normal to be, like, “You know, it’s probably not that.” You don’t want them to worry. Or you say, “Could it be something else? What about this? Have they tested for that?”  But at a certain point, I had to say to my family, “It is an autoimmune disease, 100%. Now we’re figuring out which one.” And they had to go through their own process of accepting that, just like I did.

And then when lupus pinged, and when I would share with people I might have lupus … or, for a period of time there, I would say, “I have a lupus diagnosis.” Because I do from one doctor, and from another doctor I have an “I don’t know”diagnosis… could be rheumatoid, could be lupus, could be another inflammatory arthritis. And so people don’t know a lot about lupus. They ask, “Is that contagious? Is it something that you can cure? Is it something that you did to get it?” People are just curious, they don’t know. And I have to be honest … I didn’t know before that. But considering how common it is, and I was on the Lupus Foundation website and now I’ve been on all the subreddits, andreading all the different people … It’s so very common. And that’s, I think, why this podcast really spoke to me because it isn’t something that people talk about; it’s not something that people share. And it’s not contagious!

Lauren: And that’s interesting that the line of questioning was about fault. Like, ‘Is it contagious?’ ‘Can I get it from you?’ And also, ‘Did you do something to get it?’ It’s very interesting that with the lack of understanding or knowledge also comes the question of, ’Is it your fault?’ ‘Did you do this to yourself?’ Which no one would ever ask about cancer — although maybe they would in certain situations — or various other disorders. So it’s very interesting that that came up.

Dayna: I don’t know, but I think it’s because when you say what an autoimmune disease is … “Well, my immune system is attacking my body.” I think people immediately hear that and think: AIDS. At one time, there were behaviors that were increasing the risk for getting HIV. This is not a disease like that. So … I went into the holidays and my immediate family was, like, “Is it okay if we tell people?” I have always been the type of person that I don’t feel like I can live honestly in the world with secrets. I just don’t feel the need to hide things about myself.

Lauren: I think that’s where #oversharing has resonated with you and I, very clearly!

Dayna: I don’t care … I mean, I guess maybe people will look at me differently but I hope not. And I hope not my family. It was interesting because initially it was a lot of, ‘Are we going to be able to do these things, because is Dayna going to be feeling okay?’ That doesn’t feel great because you don’t want to be the one holding people back. But luckily I was feeling great over the holidays, so everything was fine.

But it wasn’t easy to go home and see a bunch of people who love you and not have answers for them yet — to not even be able to say, this is what I have, or, this is how we fix it. Or, this is what I’m dealing with — because it’s been so new.  And so that’s kind of where I am. I don’t know what my diagnosis is, and I don’t know really what the next steps are.

I was equating this the other day to a friend of mine … it’s like I was in a really bad car accident, and I’m scared to drive again. But I’m going to drive because I need to get places and live my life. I’m just a nervous driver right — and that’s understandable. On top of that, it’s like, ‘Okay, you were in an accident … of course you’re going to be a little bit of a nervous driver. Just start driving again. But just so you know, you are going to get in another really bad accident again; we just don’t know when it’s going to happen or where.’ Imagine the anxiety of driving around, thinking, ‘Am I going to get in an accident today?’ And that’s a little bit how I feel right now. It’s like, ‘Am I going to feel sick tomorrow? Am I going to feel great tomorrow?’

Lauren: …and then treat it, because do I know what I’m even treating?

Dayna: That’s kind of where I’m at. It’s hard to live in that space. But I’ve also found that gratitude has been transformative in that way. Every day I wake up and I do this little five-minute journal and I’m, like, ‘I am grateful for my health today. Today. I feel great.’ And even if I don’t feel great later this afternoon, I’m grateful that I feel good right now. And I think that has been the hugest shift for me with this … as an actress, as a female – you know, just female full stop.

I have, I would say, flirted with eating disorders, had a distorted body image, felt a certain way about my body … kind of have been at war with my body my whole life. And I will tell you what… this flipped a switch for me. I stopped hating my body. I was, like, ‘Thank you for everything that you have given me. I appreciate you. I’m going to take care of you the very best that I can.’

Lauren: That’s like the biggest win you’ve had.

Dayna: The biggest gift! That is the biggest silver lining. I really stopped … I mean, it’s not a full stop … it’s hard, especially at the holidays when you’re drinkin’ and eatin’! But I feel like I have come such a long way in such a short time in accepting my body and loving it, and being so grateful for it. And saying, thank you for everything that you do for me every day.

Lauren: I think that’s gorgeous. And I know that you were already incorporating a gratitude practice before all of this really kicked off. So it’s great that you’ve been able to continue that practice as things have continued in the health department. So, I feel like we’ve covered so much, and what I really would like to tie this particular episode up with … and keep bearing in mind for everyone who’s listening … this is the first in a series of interviews with Dayna. Dayna has agreed to come on again as she gets more information and to talk more about her experience. So I think it’s going to be really valuable for those of you who are in the same boat, and trying to figure out what’s going on. And also for those of you who are just interested in how the healthcare system is working for you. So … you know I like my top three lists …

Dayna: Ooh, I love the top three list!

Lauren: You’ve already given a few tips, and you may want to repeat them — or give other tips. But what would your top three tips be for someone who suspects they may have something off and may be heading toward a life with invisible chronic illness? I know, before, you mentioned the notebook and the Word doc, and stuff like that. That’s what I’m thinking.

Dayna: Yeah, so I would say … number one … write it down. Because you think in the moment, I will never forget feeling this way. And I do. Lauren has reminded me of a lot of things that I texted her or said during that month that I was flaring, that honestly I forgot. Because you have brain fog or you’re in pain or whatever — you just forget normal memory.

Lauren: Life happens.

Dayna: So I would definitely say: write it down. Then, I got this advice very early on, and I will just echo it … I think you guys say it a lot … find a doctor that you like that listens to you. And don’t be afraid to be, like, ‘I don’t like you. I’m finding a different doctor.’

Lauren: Or even … you mentioned to me yesterday that you were having an experience where one of your doctors was not going to redo a blood test. And you were: “Nuh-uh!”

Dayna: Yes, find a doctor who will listen to you — but also don’t make them God.

Yes, they did a lot of school. Yes, they paid a lot of money for that degree. Yes, they know a lot. But nobody knows more about your body than you do. So you are the boss of what happens to your body. You’re the boss of the medicines you take. You’re the boss of the tests that you want run. And you’re the boss of what you do and don’t do with your body — in every way.

Lauren: Yes! Thank you, yes! 

Dayna: Find a doctor — but they’re just part of your team. You are the president, you are the CEO and you fill your cabinet with your people. People left Obama’s cabinet; he put people in there and then he was, like, “You know, this isn’t working out.” And they left, and so it’s okay to shuffle people around. You might not have your perfect cabinet as soon as you’re elected here into the autoimmune community

Lauren: (laughs) Or the chronic illness club!

Dayna: I have to start to tell myself that, on my own advice! And I think my third tip would be … what did I say so far?

Lauren: Write it down. Find a doctor who listens. And don’t be afraid to create your team the way you want it.

Dayna: Yeah, and on that team, have your support team. Find your Lauren …

Lauren: Find your community.

Dayna: Find your people. And then, figure out what makes you feel good … and write that sh*t down! So here’s another thing that I did …and I know this from years of therapy, from feeling anxious and depressed … when you’re having a strong emotion or a feeling or a symptom, in the moment sometimes it is difficult to know what to do, because you are overwhelmed with that feeling. And pain is one of those feelings. So something that my therapist had told me to do … write myself a letter when I’m feeling sad to let myself know that I don’t always feel sad — and that it will get better. I did that for myself when I was sick, because when I was sick, I felt like I would never be better. And now that I’m better, I kind of feel: was that real? Did I imagine it all, and is it going to happen again?

Lauren: It was real! You didn’t imagine it — just to reinforce that you’re okay.

Dayna: But it will be really helpful to read something from myself as Dayna … This is hard and I know you’re not feeling good, but I promise that you will feel better. This will pass. And here’s some things to do that make you feel better. And all the things that I said earlier — order out more, get more food service, take more naps. Oh, I’ve also started a list of TV shows that I want to binge watch when and if I flare again. I have a list of things, so then it feels like a treat… I get to go to my TV list! Because I don’t watch a lot of TV normally, so this will feel like a little treat for me. Other things that I like to do …take a bath, snuggle my dogs …

Dayna Schaaf

Lauren: This sort of leads me on to the next question, which is: What are your top three favorite comfort activities when you have a flare-up … or guilty pleasures … or secret indulgences? Obviously, you just mentioned a bunch of them — things that make you happy.

Dayna: I don’t really necessarily do them just when I have a flare. They’re self-care things that I’ve learned about myself, things I like to do. I love to take a good nap; it makes me really happy. Especially when I’m snugged up with my dogs and they’re like little warm nuggets. And they’re French bulldogs so they snore really loud.

Lauren: So you’ll always know they’re there!

Dayna: When they snore, they kind of buzz, they hum. So it’s a little like massage at the same time. So I know that I love that! I know that I love to watch a great movie or a TV show — something that I can really binge through is also really fun for me. I like to color, I like to do puzzles. Again, these are all things that I have learned about myself. I love to take a bath. I love to get a massage. But if I’m really flaring, I don’t think that I’m going to want to leave my house to go get a massage.

I think I would just say that to everyone: Make a self-care list. Make a list of things that you like to do.

Read a book, cook. Those are good to do all the time. But extra, especially when you’re not feeling good.

Lauren: And it’s great to have a physical list — when you’re feeling out of control. You can actually look at this thing in front of you that gives you a list of things that you can do that will make you feel good. Because I think it’s very easy to get lost in the fog of overwhelm. It gives you something outside of yourself to get out of the overwhelm.

Dayna: That’s what I’m saying … you think you’ll remember that, when you’re not feeling good. But, you know, whether it’s brain fog or pain or whatever, you just don’t have the bandwidth for it and you won’t. And there’s something really powerful about having it written down, and there’s also something powerful about knowing that you wrote that list. You know that those things make you feel good. So there is some power in that … you can know, ‘Okay, I wrote this. So I know that I like to do these things, and that these things will make me feel better.’

Lauren: I think that’s gorgeous. And I don’t think we’ve had advice quite that specific on the pod yet. So I really hope that people do that. I’ve never made a self-care list for myself, but I’m, like, ‘Oh. I know what I’m doin’ later.’

 Dayna: Yeah, hot date Friday night!

Lauren: (laughs) Guys, I’m interviewing Dayna on a Friday. So what am I going to do with my Friday night? Make my self-care list! And probably have a bath because that’s going to be on the list. Light some candles. Give myself some romance. I love it! Well, Dayna, this has been so informative and I can’t thank you enough for sharing this first part of your journey with us. And I really hope that listeners will know they’re not alone in trying to figure sh*t out.And that’s the biggest thing. Because, for us, this is a community that we’re creating. But it’s also about finding that community, which you’ve talked about — seeking resources, credible ones — as you’re researching, as you’re gathering information. So thank you for sharing that so honestly with us today. And I’m really proud of you for doing it, too!

Dayna: This has been great, and yeah, I’m looking forward to coming back and sharing the rest of this story. And thank you guys for listening, and letting me process this way. Because this is so helpful for me. I am the kind of person who processes what’s going on with me by talking about it, and by sharing and oversharing. So there you go!

And I guess, last thing, I’m no different, I’m still me, I’m still Dayna. So, if you find out that somebody you know has an autoimmune disease, have compassion. It’s a big life change, but they’re still themselves, you’re still Lauren and I’m still Dayna.

And a big thing that I’ve been working on is … like that first doctor said … not letting this define who I am or my life. It’s just a small part of my story. In Japan, I think it is, where they fix broken cups and saucers …

Lauren: …with gold!

Dayna: So I’m kind of like ready to get a gold crack tattoo!

Lauren: Yeah! That’s a lovely idea. I actually think about that a lot. And I was thinking about doing an Instagram post about it, actually – for the podcast. So it’s interesting that you bring it up. Because I think it’ssoapplicable to those of us who are dealing with a chronic invisible illness … it’s almost a touchstone because it gives us something even more beautiful that’s also visible. And it’s like, you’re not broken… we’re piecing you back together.

Dayna: And it’s a part of your story but it’s not your whole being. It is a part of you, but you’re still you.

Lauren: And that no matter what it is, we have to seek the good in it and seek the beauty in it.

Dayna: Absolutely.

Lauren: Well Dayna, I love you so much. Thank you so much. Can’t wait to have you back on the show. I know I’m going to be talking to you plenty in between. And again, if anyone is looking for Dayna … and she’s probably going to be sharing parts of her journey to health on her Instagram in particular, check out @livefreewithD… just the letter D. Because a lot of us just call her D. Dayna, thanks so much and we look forward to the next installment.

Dayna: Thank you for doing this. Lauren. This has been so tremendously helpful for me.

Lauren: Ah, so glad that it’s helping you.

Dayna: All right. I love you.

Lauren: Love you!

Dayna Schaaf

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