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It’s Not Just Dry Eyes: Deep Dive into Systemic Sjogren’s Disease with Dr Kara Wada
Patient Stories, Podcast, Provider Interviews

It’s Not Just Dry Eyes: Deep Dive into Systemic Sjogren’s Disease with Dr Kara Wada, Episode 91 of Arthritis Life Podcast

March 16, 2023
64 min read
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Summary:

Dr. Kara Wada dives into the complexity of Systemic Sjogren’s, combining her experiences as both a  board certified Allergist-Immunologist and a Systemic Sjogren’s Disease patient.  

Dr. Wada and Cheryl delve into the connection between Sjogren’s and Rheumatoid Arthritis, discover what’s in Dr. Wada’s disease management toolkit, and share insights into living a full, vibrant life with chronic illness.

Dr. Wada and Cheryl also share insights into how mental health can be affected by chronic illness, and reflect on how the “overachiever” lifestyle is not always helpful. They encourage listeners to focus on making decisions that align with their values and target living well with chronic conditions rather than focusing on total symptom elimination. They encourage listeners to find ways to live a balanced lifestyle and develop a support system which can help you thrive throughout the highs and lows of chronic illness life.

Video of conversation

Episode at a glance:

  • Understanding Sjogren’s Syndrome: The immune system attacks moisture producing glands and parts of the nervous system, leading to a variety of symptoms including dry eyes and mouth, difficulty swallowing, fatigue, body aches, irritable bowel, and small fiber neuropathy. Rheumatologists are typically the specialists seen for Sjogren’s, but patients may also get support from neurologists, ophthalmologists, and other specialists.
  • Perspective as an Allergist-Immunologist: Advocacy, bringing awareness, and education  
  • A look Inside her Toolkit: Finding the right medications, carrying a water bottle, using eye drops, utilizing stress management skills, and being mindful of lifestyle factors like sleep hygiene, movement, and nourishing your body with proper nutrition.
  • Chronic illness and mental health: Initially felt like being an “overachiever” by working out often and taking supplements would ease symptoms, but that’s not necessarily helpful. 
  • Words of caution re: supplements & “natural” methods: Dr. Wada and Cheryl discuss the reasons to be cautious about supplements as there isn’t much regulation or transparency with them currently.
  • Advice for living well despite chronic illness: Take a deep breath, there will be good days and bad days no matter what. Focus on making decisions in alignment with your values.
  • Want more Sjogren’s support? Check out the Sjogren’s Summit – April 1st-2nd!: 

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Kara Wada

Dr. Kara Wada is an Assistant Clinical Professor and Associate Fellowship Program Director of Allergy/Immunology at the Ohio State University in Columbus, Ohio. She graduated from the University of Illinois College of Medicine and completed her Internal Medicine and Pediatrics Residency and Allergy/Immunology Fellowship at the Ohio State University and Nationwide Children’s Hospital. 

After having completed additional fellowship training in medical education, Dr. Wada is passionate about building meaningful connection and therapeutic relationships with her patients and inspiring future physicians to do the same. She seeks to empower her patients and coaching clients with a naturally-minded and scientifically-grounded approach to care.

She speaks nationally on topics including medical education, allergic and immunologic conditions. Outside of her work, she is an autoimmune patient, a food allergy mom of 3 kids, and wife to another Dr. Wada.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

Full Episode Transcript:

Cheryl: 

Yeah, I’m so excited to have back for the second time on this podcast, Dr. Kara Wada!

Kara:

Hello!


Cheryl:

To talk about Sjögren’s is something we haven’t done like a whole episode on it before. So, I’m so glad you’re here. Can you tell the audience a little bit about where you live? And what is your relationship to arthritis or rheumatic disease?

Kara: 

Yeah. So, hello, and thank you for having me back. My name is Kara. I live in Columbus, Ohio, which is where the Ohio State University is located. I work at the University; I am a practicing allergy and immunology physician. So, I do see some patients who have what I lovingly refer to as ‘misbehaving immune systems’. More often, I am leading kind of treatment plans for people who have allergies as the name would imply, but also immune deficiency. And one of the really obnoxious things about the immune system is it’s not infrequent that folks who have allergies and/or especially immune deficiencies are more prone to developing autoimmune conditions. And in particular, inflammatory arthritis, which is RA. And I was diagnosed with systemic Sjögren’s in spring of 2019, which was both a surprise but also some validation for things that I really had not been listening to as well as I probably should have. And leading up to that. 


Cheryl:

Very busy.


Kara:

Yeah.

Cheryl: 

Yeah, yeah. And, let’s just actually just define, so people have a framework, what is Sjögren’s disease or systemic Sjögren’s?

Kara: 

So, Sjögren’s is also known as Sjögren’s syndrome. Although there is a big push to really know it as Sjögren’s disease or systemic Sjögren’s. It is an autoimmune condition. It is actually probably equally as prevalent as rheumatoid arthritis, though most folks don’t recognize the name, and I joke that’s because it sounds like a chair from IKEA. But it affects 90% of the folks, and it affects our women. And it’s hard to diagnose. So, in about 60% of us, we will have blood markers that will kind of signal that the immune system is kind of misbehaving in this way. And primarily, it will be, you know, the immune system is recognizing and seeing a lot of our glands that create moisture in our body as the enemy and also, for many folks, parts of our nervous system as well. So, a lot of folks will also have trouble with something called small-fiber neuropathy, or dysautonomia, where your automatic nervous system is going a bit haywire. So, you may have increased heart rates or low blood pressure, things like POTS, which may be a little more commonly talked about now.

Cheryl: 

Yeah, and like in my case, gastroparesis, which is a sort of slow, you know, slow gastrointestinal motility. It’s interesting because — I should say before we go further that I’ve never been diagnosed with Sjögren’s. So, I do have a lot of the same symptoms and as they say, sometimes you know, autoimmune diseases don’t like to travel alone. They like to have others hop along for the ride. But yeah, thank you for explaining because it really does — a lot of people have this misunderstanding that if they do know what Sjögren’s kind of connotes in their mind, it’s like, “Oh, that’s just that thing, that’s where you have dry eyes.”

Kara: 

Yeah. I mean, that’s what I thought. Years! I knew the board question. The board question could be one of a couple of things. It always was a woman, and it included dryness. So, dry eye, dry mouth, typically would be what would be in the question stem. And they also would talk about this specific auto-antibody. So, the immune system proteins that are found in the bloodstream that signal, you know, the immune system not seeing ourselves as safe, which are called SSA and SSB antibodies, but those are negative in 40% of people. 

Cheryl:

That have Sjögren’s.


Kara:

That have Sjögren’s. It’s a really significant number. But the reality is over 90% of us deal with significant fatigue, a lot of body pain, we may or may not have inflammatory arthritis. That’s a little more hit or miss. Majority of folks will have digestion issues, whether it’s trouble swallowing, or trouble with, you know, kind of irritable bowel-type symptoms. And then, the nervous system issues that I talked about as well. Those are kind of the main things. And the other organs can be affected too, like the lungs, the liver, you kind of name the organ, it has the potential to go there.

Cheryl: 

So, it’s kind of like with rheumatoid arthritis, people think, okay, they might hear the word arthritis and they think, “Oh, it’s just joint pain,” but similar to RA, where maybe the initial kind of inflammatory process starts when your body creates antibodies to the synovial lining of your joints and tries to attack that. It becomes then systemic, you know, over time, and affects all the other organs. And so, I like the idea of person — no one’s asking me — but to put the word systemic into the Sjögren’s name because I think it connotes a more serious condition. Yeah.

Kara: 

And for a long time there was this, like, this concept of secondary Sjögren’s. So, could this Sjögren’s be a result of your rheumatoid arthritis or your lupus? But really, the science has not pointed to those being true demarcations. And so, that terminology is falling by the wayside.

Cheryl: 

Okay, and I, we are going to get to your story because I think it’s the personal stories that are always so helpful. But as long as we’re on this linear route of like ‘What is it?’, what are the typical symptoms beyond dry eyes and dry mouth? I mean, you mentioned fatigue, small-fiber neuropathy. Anything else that people have — and then the auto-antibodies — anything else that —?

Kara: 

Yeah. I think, you know, the big things that will come up that will clue me in to say, “Okay, should we check for this?” — more often when I hear that someone has been labelled as having fibromyalgia, but there’s like, maybe seems to be a little more to it. I’ve spoken a lot with, there’s another physician who is a Sjögren’s patient, Dr. Sarah Schaefer, she runs this great website called Sjögren’s Advocate. But she and I kind of have this unofficial kind of theory that she started and I tend to agree with that there are probably quite a few folks who have been labelled with fibromyalgia that are what we call seronegative or normal bloodwork Sjögren’s patients that will have, you know, this difference in how we sense things. With that small-fiber neuropathy, you may have loss of sensation, or something called allodynia where like light touch is more painful. Also, you know, the fatigue is, I think, one of the real characteristic symptoms that tends to be pretty pervasive. And then, those other dysautonomia symptoms that I talked about, so slow digestion or other irritable bowel-type things, trouble swallowing, getting dizzy or having inappropriately fast heart rates when you really shouldn’t; those are other things that would come to mind.

Cheryl: 

Yeah, and I know that some of the people with rheumatoid arthritis — because my audience listeners have a variety of conditions, or their families and loved ones, like my mom. She listens all the time. There was a call with her, “I’m on a walk. I’m listening to the episode with, you know, this person,” but, you know, a lot of people are probably putting some wheels, you know, the wheels are turning because, yeah, like I know in my case, the first doctors I went to were the GI doctors. And I was having trouble swallowing, felt like there was constant lump in my throat, dry eyes, dry mouth, and in addition to the main problem was the digestion is leading to like, weight loss, unintended weight loss. But anyway, you know, so if you do, if you are listening and you suspect, who are the physicians that do diagnose Sjögren’s?

Kara: 

Typically, it will be a rheumatologist. The problem is Sjögren’s really has not gotten really gotten much of the educational time in rheumatology training programmes. So, it is hit or miss. And there is a fair bit of needing, for many folks, to get sometimes second or third opinions. I also work closely — in our department, typically, allergy immunology is is in with other non-surgical people. At Ohio State it is this really cool collaborative environment where I am in the same department as the ear, nose, and throat surgery doctors. And so, in the next hall over — so, and the reason that’s important for me is if I see someone that I’m suspicious about it, their bloodwork is normal. The next step in evaluation is to do a biopsy from like the inside of the lip. And it is certainly not the most pleasant procedure. But it is a pretty straightforward procedure that they can do with just a little bit of local anaesthetic in the office to further evaluate for Sjögren’s. So, that would then look for inflammation in the salivary gland itself. And then, immunologists are also commonly involved in diagnosis as well. Sorry.

Cheryl: 

Yeah, no, no, that makes sense, given the symptoms. I mean, it’s just, you know, I know a lot of us who kind of went through a pre-diagnosis, but suffering — a suffering without a diagnosis period — often, it’s very much like cathartic afterwards to be like, “They should have known!” you know. I know, you, as a physician, it’s like, your feelings are valid, but also, we should take just a moment and recognize how difficult the diagnostic process is for any autoimmune doctor.

Kara: 

Yeah. Well, and what I realized was, you know, I had this, this very small, narrow snippet of what I knew about Sjögren’s. And really, you know, 99% of all that I know about Sjögren’s now has really come after my own diagnosis. And so, that is really what has, you know, seeing how much privilege I had as a patient, you know, being educated, having insurance, having a supportive spouse, having friends that are doctors, like —

Cheryl: 

Your spouse is a doctor, too.

Kara: 

Like, right, like it, you know, it’s like the perfect recipe, right? But like, how can I use all that privilege to really — and also still struggling to get, you know, to figure out what’s going on, and to feel heard and seen. And so, I really feel like it’s my purpose to use that privilege to help others. And one of the ways in doing that is to help teach my peers what Sjögren’s can look like.

Cheryl: 

Yeah, yeah. 

Kara:

And to think of it.

Cheryl:

That is, so first of all, everyone who has these, you know, Sjögren’s or similar diseases, we applaud you; I speak for everyone now. And I think that’s amazing that you’re, you know, because you’re busy, you’re a busy mom of three. So, you’ve got a lot going on. So, I’m inspired that you’re you take the time to be such a great advocate.

Kara: 

Well, so, interestingly — and I know maybe this is a segue into kind of sharing my story — but it was within two weeks of my diagnosis that my now middle daughter, she was nine months old, and she was diagnosed with an egg allergy, she had a mild anaphylactic reaction to egg. And it was kind of this like, ‘Holy, you know what’ moment of like, realizing that our family was very much just, you know, in this ‘Just Keep Swimming’ mode and weren’t really — we were letting life kind of fly by and happen. We weren’t taking ownership or having agency in making decisions in how we were living. And so, you know, it’s it’s certainly been very much a journey since that time, and it was not rainbows and unicorns right away. But slowly, but surely, I figured out, okay, these are my values. I want to make career decisions that align with those. And that, in that regard, has made it a lot easier to know what to say ‘Yes’ to and to feel a little less, like, eugh about saying ‘No’ to things.

Cheryl: 

Yeah. That needs to be — we need an intervention, both you and I, because, yeah, we’re both involved in a lot of things. And it’s hard when you’re so passionate, right? You know, there’s not enough hours in the day.

Kara: 

Well, and you see how much need there is. Like, this system is broken. I did like a little Instagram stories yesterday, and I was railing on essentially how in healthcare, there’s been a lot of vertical, essentially monopolies that have been built between insurance companies and pharmacies, pharmacy benefit managers, all these different things. And I asked, you know, “What other questions do you have about the system?” and one of my girlfriends from college who will remain nameless, she’s like, “How can we just blow up the system and start from scratch?” And I was like, great idea. I don’t know.

Cheryl: 

Oh, there’s so many, yeah, systemic issues. And if you do, if you are so inspired, the National Associations are often a good place to start if you want to really — because it’s not something that typically one person is going to be able to really move the needle very much on their own. It really is gonna take like a team coordinated effort. So, like, I’ve gone to Washington DC on behalf of like the Arthritis Foundation or, you know, the American College of Rheumatology, they send patient advocates. And then, that’s easier because then they do all this research, and they have lawyers and people that will help you with like talking points. And but, yeah, it’s brutal. It’s brutal to find out. It’s a moral injury, you know, to discover that, oh, well, okay. All these doctors and amazing people have like, developed these treatments. Okay, so I’ll just get on the treatment, right? Oh, no, the insurance is going to make me suffer more so that they can improve their bottom line. It’s just evil, you know. Why do they need more money? They’ve made record profits during the pandemic.

Kara: 

There’s so much thought that goes into selecting a medication for a particular patient. Even something as simple for me is like an anti-histamines. Like I’m thinking about, you know, different factors. What is the patient’s, you know, what are their goals? Have they had side effects? Do they have other health conditions, like liver or kidney problems that we need to think about metabolism, you know, how the medicine is processed? Cost, obviously, factors in there. And a big part a lot of times is me every, like, January every year trying to figure out which form, you know, which insurance plans cover which medications because that, unfortunately, trumps almost all things, especially as we look at these biologics, you know, which are so prevalent in RA. We’ve yet to get them quite filtered over to Sjögren’s yet, but there are quite a few that are promising and are in like phase two and phase three trials.

Cheryl: 

Okay, well, that was actually — okay, I put a little note to myself to circle back to. What are the treatments for Sjögren’s? And then we can go back to your story, because I want to learn more about that.

Kara: 

Yeah, so for for most folks, hydroxychloroquine, also known as Plaquenil, is kind of the go-to. And occasionally some folks will be put on methotrexate, though maybe not quite as helpful. And some of the other kind of DMARD’s are, you know, that are kind of the older school ones. The newer biologics that have been revolutionary for rheumatoid arthritis and then also several for lupus now have not been helpful for Sjögren’s at this point. Sjögren’s also has a pretty significant risk of developing certain types of lymphoma, which are lymph node cancers. Thankfully, they are low grade, which means they are not likely to kill someone. But obviously, no one wants to be told they have cancer or have an increased risk of cancer, right? Like, that is just about the scariest thing you can have when you do your little Google search trying to figure out what you have. But sometimes, medications that are used to treat lymphomas and other rheumatologic diseases are used. So, rituximab is kind of a bigger gun medicine, so to speak, that will be used in more severe cases. And that essentially wipes out the B-cells that produce those auto-antibodies, or those proteins that are attacking the body.

Cheryl: 

Okay, yeah, so those are the treatments that are actually going to like, modify the disease on like a cellular — well, okay. But then, the lifestyle or some of the lifestyle or non-medicinal —? 

Kara: 

Yeah. So, well, and what happened with me is, you know, I’m kind of looking how I cope with stress and stressful things is like, you know, we all, we maybe deal with a little weird humour or, you know, usually I’ll go eat my feelings. But I also like to get a little more analytical and kind of like, look, you know, pull up the research papers. And when I realized that there wasn’t much in between hydroxychloroquine — which, you know, I had started but also had been told it would take several months to kick in — and rituximab, which, for context, I see people who, I have a skewed picture, but I will see folks whose immune systems maybe have not bounced back after they take rituximab and need immune system infusions like IVIG. So, I see those folks pretty commonly. Either maybe they got that medicine for cancer or autoimmune disease. So, I have a skewed view of that med. I’m sure some folks who’ve taken it, you know, many are like, “It’s life-saving, it’s great.” But I just, I have only seen the bad thing. So, I was like, what is there in between? 


We know and, you know, I kind of knew that there was good data for like heart disease and, you know, other inflammatory conditions. I’m to help decrease inflammation through eating a healthier diet, exercise, mindfulness. And interestingly, I was going back through — I was slowly this last couple of weeks going back through to see get some things together to go up for promotion next year. And I gave a talk, like a journal club talk on a paper looking at the influence of diet on asthma control right around the time I was diagnosed. And so, I think that probably was playing into my mind as well, like, you know, it’s all hindsight, right? I didn’t kind of think of it. And what was really cool about this article was it looked at the diet as a whole. It didn’t just look at a particular vitamin C supplement, or vitamin D level, or taking fish oil. But there is increasingly data that would say eating a plant-predominant or plant-focused diet that’s rich in various fiber is beneficial. And that, of course, has to be adjusted if you’re dealing with gastroparesis or other, you know, gastrointestinal issues. Like, you may not tolerate a high fiber diet, so that, you know, that all has to be kind of personalized. Minimizing things like saturated fats; so, fried foods, red meat, high fat dairy, those sorts of things. Things, of course, as a lifelong Midwesterner, I love. And movement. So, trying to get some regular exercise, but not too much, because too much is actually a bad thing. And then, mindfulness. There is like, really good data to say that all the things that like maybe we sometimes think of as ‘woo’ are actually really beneficial.

Cheryl: 

Yeah, I’m all about mindfulness. It’s, yeah, it’s, I mean, it took me a long time because, yeah, I was very defensive about the idea that maybe stress could influence my disease because I’ve been told, “You’re just stressed,” as like a way to get me out of the office. You know, “It’s just anxiety,” then realizing okay, now that I have a more like, you know, open minded relationship and self-compassionate view of myself and better understanding of the disease process, it’s really evident for me that sleep, adequate sleep —

Kara:

Yes, yes. Thank you. Sleep. That’s my biggest one.


Cheryl:

Sleep and movement. Yeah, like lack of sleep moves the needle pretty fast on my joint pain, and inflammation, and high stress. Yeah. Weirdly enough, though, this is a total tangent, but just in case you have anyone else who’s also got gastroparesis or low appetite, when I’m stressed my appetites better. So, I don’t know what that’s all about. Because it’s like, it’s supposed to be like, you know, the blood goes away from your stomach. You’re supposed to digest worse, but —

Kara: 

Maybe you’re having a little increase in cortisol, which if we put people on prednisone, it makes them hungry. So, maybe. I don’t know.

Cheryl: 

Oh, interesting. Okay. 

Kara:

Food for thought. 

Cheryl:

No, yeah. Yeah. So, it’s no, it’s empowering for people to I think, hopefully, hear that there are lifestyle — the same kind of lifestyle modifications that help with rheumatoid arthritis sounds like would also help with Sjögren’s.

Kara: 

Yeah. And you don’t need some, you know, fancy unicorn tears supplement that someone’s trying to sell you to do that. There is some data to support vitamin D. A lot of us are vitamin D deficient, especially in areas that are, you know, kind of have drearier seasons. Ohio, from like, October to April, it’s the season of grey.

Cheryl: 

I’m talking to someone who lives in Seattle, so understood. That’s interesting.

Kara: 

And then, omega-3. So, that is another one that there is some decent data towards. And then, turmeric. Like, you know, some of those spices, like they are potent anti-inflammatory benefits, just to make sure you tolerate them. Okay, some of those, like turmeric in particular, too much of it can kind of cause some GI upset.

Cheryl: 

Yeah, yeah. For me, it definitely increases motility.

Kara: 

Exactly. That is a better way of putting it.

Cheryl: 

Yeah, so that can be a welcome change if you’re someone’s who’s — but if your system already moves fast, it may put you into too much, too much of a good thing. Yeah. And then, of course, there’s the eye — for the specific symptoms for specific areas of the body, like the eyedrops and the mouthwashes. 

Kara: 

Absolutely. A lot of supportive care. So, I am, admittedly, I do not do a great job of putting eyedrops in throughout the day. But I’ve found of all things a serum that helps my eyelashes grow but actually originally was developed for dry eye that I tried to use most nights that works really great for my dry eye. I think it’s called —

Cheryl: 

Wait, you put it —? You put it in your eyeball, or on the skin?

Kara:

No, just on the lashes. 


Cheryl:

Oh, okay. I was like confused. Oh, wow.

Kara: 

And a little on my brows. Because I’m also, you know, one of the things I think that was so sad for me prior to my diagnosis was I realized my eyes were dry, I was no longer able to wear contacts.

Cheryl: 

Yeah, me too. That’s why I don’t. 

Kara: 

Mascara became really challenging to wear. And I was someone who never left the house without mascara. And it was to the point where I always looked like a raccoon because I was rubbing my eyes, right? So, I just I stopped wearing it at one point for several years. And now that I’ve gotten symptoms back under control and found a product that has a lot less stuff in it, it’s, you know, that’s a topic for another day, you know, the whole, like, the term ‘Clean beauty’ is not a thing, but I’m sure, you know, there are some products out there that are tolerated better. In particular, like looking for one, like, I found one that was developed by an eye doctor and she, her whole purpose of her company was she saw folks with a lot of eye symptoms related to their makeup and wanted to provide something different for that.

Cheryl: 

Oh, that’s really helpful to know because yeah, for me, my eyes are — I do do the Systane Ultra eye drops, which I love.

Kara: 

The eye doc’s will tell you, if you are using eyedrops more than three-ish times a day, you really should use preservative-free, because a lot of times those preservatives can become problematic over time. Our immune system can kind of make our response to the preservatives.

Cheryl: 

Yeah, that’s really a good point about like examining your makeup products, especially for eye makeup or maybe even lip, because lip drying is also —

Kara: 

Absolutely. Yeah, I am obsessed with different like moisturizing lip products, because they are typically pretty dry. I mean the other thing that’s really important for Sjögren’s is trying to take the best care of your teeth that you can. And I did not do a great job of that growing up. Like, we lived in — we had well water so the water was not fluorinated. And admittedly, my parents weren’t super on top of us with flossing. Like, they were with brushing, they were with getting us to the dentist but I had a lot of cavities growing up. And then, in medical school, I didn’t have dental insurance for some time and I postponed checkups for a couple of years. And during those years I also was grinding my teeth because I was made very stressed out. Yeah, I did considerable amount of damage. But one of the first things I ended up doing before I was diagnosed or anything was my dentist said, “Hey, you got to give up diet soda. It’s destroying your teeth.”

Cheryl: 

So, it’s not the sugar. Was it the fake sugar, or is it the —?

Kara: 

It’s carbonation in large part, and in particular with sodas it’s pretty bad.

Cheryl: 

So, I’ve been drinking kombucha lately, which is you know, carbonated. So, now I need to figure out —

Kara: 

No, I still have I still have some sparkling water from time to time, but it’s not like — I’m also using like prescription toothpaste that has stronger fluoride in it. I’m pretty religious about my flossing and my checkups too.

Cheryl: 

Yeah, yeah, me too. I go every four months and even more often if I need versus most people it’s like six months. But that can be — I think if those are who are like newer listeners, I have an episode with a really great like integrative dentist. 


Kara:

Oh, awesome.


Cheryl:

She’s awesome, I’ll send you her info. I’m having brain fog, so I can’t remember her name right now. Sorry. 

Kara:

That’s okay. 

Cheryl:

But she’s incredible. And she talked a lot about, like the gut. The difference between your oral microbiome, your gut microbiome, and developing rheumatoid arthritis. Yeah, she’s great. She also is very like research-based. So, she, yeah. Okay, ‘Dental Health, Oral Microbiome and Rheumatoid Arthritis with Dr. Victoria Sampson’. 

Kara:

Awesome. 

Cheryl:

I’ll put that in there.

Kara: 

I’m curious if she was pro-xylitol. Most dentists I’ve talked to think that that’s an okay thing, and can be helpful. There are a lot of the lozenges, like dry mouth lozenges, and even dry nose spray. There’s one called Xlear, they have xylitol in them, which I guess my understanding is feeds like, good microbiome.

Cheryl: 

Yeah, my personal dentist had recommended it.

Kara: 

Yeah. The only thing to watch out for is for some folks with IBS, it can be a trigger. So, just be conscientious of it. It’s like FODMAP’s.

 Cheryl: 

FODMAP’s. Yeah, yeah. When I was being traded for SIBO, I definitely — or SIBO, however you pronounce it.

Kara:

Tomato, tomahto. 

Cheryl:

Yeah. This is so helpful. Because I think, yeah, even, you know, regardless, if you have a diagnosis, like, I guess, this is something that some people get — this is a side note, but important actually — like, if you have already a primary diagnosis of like rheumatoid arthritis and you notice that you have these other things that may fall into a different diagnostic category. Like, I remember, I brought up Sjögren’s to my rheumatologist and at the time, I probably should follow up with her because it’s like, 10 years ago. She was like, yeah, we wouldn’t really change your treatment based on it. So, you know, if you’re doing your follow up with ophthalmology, you know, every year, you’re getting — because I get the punctal plugs, too. Oh, yeah, punctal plugs, the tear drop plugs, you know. And she’s like, we wouldn’t do anything different, you know. But for me, it’s like kind of has to do with your personality, I think, because I like knowing, you know. I think I kind of want to get the lip biopsy now just just to understand myself better. But is there, as a doctor — not that you’re giving medical advice — but like, do you think it’s, what if someone’s listening to this and they’re like, “I think I might also have Sjögren’s?” 

Kara: 

I think it’s, well, I definitely think it’s at least worth mentioning to your team. And one of the questions I will ask my patients, and we think of together, is will it change our management? And that includes how you think about things. And so, I think that that is where that shared decision making really comes into play. I’ve had patients go both ways and say, “Hey, you know, I would rather wait and see. I’m doing okay. I’ll make some of these anti-inflammatory lifestyle things.” And their symptoms aren’t so severe that, you know, I don’t think it will necessarily change management. I already have referred them and getting them plugged in with rheumatology just to make sure, because those are the folks that really should be on board. And then I’ve had other people that say, “No, I really want to know, I’m totally okay with, you know, a minor in office procedure. Like, let’s do it.”

Cheryl: 

Yeah, yeah, I just, I thought that was a question people are gonna have.

Kara:

Absolutely.

Cheryl:

And we will circle back to your story. But what if people want to learn more? Because it does seem like Sjögren’s, you know, of all the arthritis is people feel like oh, like psoriatic and ankylosing spondylitis are like the unknown ones. But then, Sjögren’s is like, of all the autoimmune diseases, Sjögren’s is like one of the lesser —

Kara: 

Yeah, we’re like the ugly stepchild, and I don’t know why.

Cheryl: 

I thought Venus Williams did hopefully move the needle when she came out as having Sjögren’s. There were some great — I remember seeing that.

Kara: 

And also, Carrie Ann Inaba and Halsey also are, those are three famous people. 

Cheryl:

I didn’t know Halsey — I know she has EDS, too.

Kara:

Yeah. And suspected mast cell POTS, too. There was, I think she had in her post a few months back.

Cheryl: 

But yeah, where can people go —

Kara: 

So, a couple of great websites. So, Sjögren’s Advocate that I mentioned is put together, it’s a totally volunteer kind of work from Dr. Sarah Schaefer. She’s another physician who is a Sjögren’s patient and she is a fierce advocate for us. I am a total fan girl of hers. Just an amazing human. Another place that’s really helpful is the Sjögren’s Foundation. So, sjogrens.org. Great, reliable information. The other if you are dealing with symptoms of dysautonomia, Dysautonomia International has some really great resources

Cheryl: 

Or what about the Association for Autoimmune Disease — I always get that wrong. Autoimmune Association?

Kara: 

Yeah. Well, Dysautonomia International has done some joint research funding for Sjögren’s lately, too, which made me like super excited, because so many patients deal with both. And then, I have like, on my site, I have more of the lifestyle aspects. There’s another doctor of psychology, Dr. Susan Masterson, who also has some really great resources too, and are like more lifestyle related as well.

Cheryl: 

But what about your Sjögren’s Summit? Don’t forget that.

Kara: 

Yes! So, April 1st and 2nd, we are hosting the second annual virtual Sjögren’s Summit. So, last year, you know, we’re kind of in, you know, in the midst still of pandemic-dom, right. Like, we weren’t travelling. I think so many of us were just craving human-to-human connection. And I especially was within the chronic illness community, and specifically the Sjögren’s community because I saw these really amazing pockets, you know, in groups of folks with RA and POTS and mast cell, and wanting that for our Sjögren’s community as well. And I loved what the Sjögren’s Foundation was putting on. Every year, they put on a really fantastic educational conference, which has tons of great information. That’s another awesome event to attend. But I was looking for something that had more ability for that community to come together, for folks to interact more, in particular for medical professionals and patients to talk amongst themselves more. Because I think that’s the way that we’re going to break down some of these silos between folks, and build bridges. And I also was looking for something that was uplifting and empowering to say, “Okay, here’s what we have, but what can we do to make the most of it?” And so, we’re doing it again. I learned so much the first year.

Cheryl: 

Oh, my gosh, no, this is such perfect timing. Yeah. Like, I just finished up last weekend the second annual Arthritis Extravaganza. Similar thing, you know, it was so great. It’s so great. And, yeah, that was a second time doing it. So, it’s funny because people couldn’t know, okay, the first weekend of the first of, you know, February will be the Arthritis Life Hack. And then, yours is just — I don’t know if it’s always going to be an April. But —

Kara: 

I think that’s the plan. This is, you know, heard it here first. I’m also looking ahead. July is World Sjögren’s Day. And last year, we had over a thousand people register. And folks from, I can’t recall, 16 or 18 countries. So, it’s like folks from all over. And so, my hope is that it continues to grow. And we’re able to continue to bring visibility to one of these invisible illnesses that doesn’t get the screen time it needs.

Cheryl: 

Yeah, I mean, was there even a Doctor House episode with it? 

Kara:

There was one.

Cheryl:

Oh, there was one. Okay, good. At least we got one. Yeah. But no, that’s wonderful. I know, it’s really — it’s fun. But I know, it’s a lot of work. You’re better at del — or from my knowledge of you, you’re better — you’ve been, you’re more advanced in your delegation than I am. So, I’m working on that. That’s my big goal for 2023 is to, you know, I either need to do less or delegate more. It’s not, I can’t overthink it. Really, that is what it is. Like, it’s just, that is — I literally, yeah.

Kara: 

We’re human, right. 

Cheryl:

Yeah, exactly.

Kara:

There’s so much we can do. I actually was trying to write up some wording, because I want to invite Ms. Williams and Ms. Inaba and Halsey. I figured what the heck, you know.

Cheryl:

Why not?


Kara:

Why not. Worst case, I get no reply. Or they’re like, you’re a jerk. But I wrote in there. I’m like, I realize you’re human. And everyone is probably asking you for something. But we would love to have you in whatever capacity you, you know, you might be able or willing to joint.

Cheryl: 

You know what they could do? They could just even record like a 30-minute —

Kara:

I said that. 

Cheryl:

Okay, same thing. 


Kara:

Even just like a little, “Hey!” 


Cheryl:

I said 30-minute, I meant 30-seconds. Yeah, yeah. 


Kara:

I would be so thrilled. 

Cheryl:

I know. That’s — okay. So, I’m manifesting this into the Universe is that like, so, Dax Shepard has psoriatic arthritis. And yeah, he doesn’t talk about it that much. But I’m a pretty dedicated listener to The Armchair Expert podcast. So good. Yeah, and he occasionally we’ll just throw in something about it. You know, he’s on a diet for his autoimmune disease. And I would love to have him involved with some events. He’s so busy.

Kara: 

You know, with the Williams sisters both dealing with autoimmune disease, and Venus ended up creating a supplement and vegan kind of protein company. So, she, you know, certainly obviously has been very health conscious with her career, right. And then, also, although it wasn’t discussed, you know, the, the role of medical gaslighting in their care, you know, certainly has come up. And I got senses from Halsey that she had probably similar experiences. 


Cheryl:

Oh, no, she’s talked about it. Yeah. 

Kara:

And so, and I know Carrie Ann Inaba has started a whole website devoted to kind of health and wellness and has talked about her more holistic approach to her treatment of her symptoms. And so, I’m crossing my fingers and trying to manifest the positive too.

Cheryl: 

Oh, yeah. If anyone has any connections! Okay, so, let’s do this — I want to hear more about your personal story. So, after your second was born, yeah, you started —

Kara: 

Yeah, Josie was about nine -months old. I had gone in for a dental checkup, kind of that first checkup after having her. And the hygienist was like, “Hey, your mouth tissues are really dry.” And I was like, “Yeah, my eyes are dry, too, I should probably get that checked out.” And I kind of said it tongue in cheek at the time. But then I was like, I’m also just really exhausted.

Cheryl: 

But when you have — when you go from one to two children, it’s like, how do you know if it’s normal —?

Kara: 

Right. And I also was in my first year — I was, it was my first year of being an attending physician, too. And so, you know, like, that’s also a big transition. Probably more so than, you know, some of those other transitions through my career and training. But what I was realizing is when I was sitting on the floor trying to play with Charlotte, who at the time was three-and-a half, four, and Josie, as she was like, moving around, when I would go to stand out from sitting like, you know, crisscross applesauce on the floor, I would be hunched over like my grandma for a good minute before I could like straighten back out. And it was, it was so painful that I didn’t — like, I didn’t want to sit on the floor and play with them. Like, I did. But I didn’t, right, because I knew I was going to pay for it later. And it was kind of that combination of things coming together that I was like, I need to make an appointment with my primary care doc, and ask for some bloodwork. 

And, you know, this is kind of where the part of like my privilege came in, you know, like, I got an appointment thankfully relatively quickly. I knew what labs I wanted to check, like, kind of given my, my background. But I still had to, like, push for it. Like, she’s lovely. And I think she was just doing it to reassure me and not want, you know, also not wanting me to have something wrong. But also like, “I guess we can do that,” you know, like kind of like reluctant, right? And I, you know, in the meantime, had reached out to a girlfriend, a rheumatologist girlfriend who I, you know, a colleague that I love. And when my labs came back positive and she’s like, “It’ll be fine. No problem. We’ll like, we’ll see you, we probably won’t even put you on meds, but like, let’s hear all the other bloodwork we need.” And then, I saw her when my blood work was back. And she’s like, “Yeah, about that… We need to put you on something.” 


Like, it’s not, you know, like my labs were way off. And so, things that also can kind of go along if you’re, you know, if you’re wondering, and everyone’s lab profile’s a little different, but you can have a positive ANA, a positive rheumatoid factor, the SSA or B antibodies that I mentioned that are kind of the Sjögren’s antibodies. And then, another thing that they will follow pretty closely in Sjögren’s are your complement levels, which are proteins that essentially get gobbled up if your immune system is in overdrive. And so, when those levels are low, it means that you are kind of chewing through that protein, you’re using it up or consuming it, and that’s not a great thing. And so, those levels were low and I think that’s what made her, if I had to guess, that’s probably what made her a little bit more squirrely about my stuff.

Cheryl: 

Yeah. Yeah, it’s a really fascinating experience, or kind of hard to put into words when someone has tried to reassure you by saying, “You probably don’t have this super like actually scary thing,” and then to be like, “Actually, you do.”


Kara:

And then they put you on meds.

Cheryl:

“You’re probably you’re so young, you probably don’t have rheumatoid —” okay, actually, you have like a really severe case that is like, I don’t even understand how you’re like walking.

Kara: 

And then, so then, you know, here I am like trying to dig into like, okay, what, you know, after the initial little mourning period, you know, what else can I do? So, being the Type A, you know, A+ student, you know, always, I was trying to do all the things. Find this special, secret sauce recipe to make it go away. And so, I was like working out really hard on the Peloton, I was drinking green smoothies with my superfood supplements, you know, I was doing all these things. I’m admittedly still really stressed about everything, right? Because that, I didn’t address yet.

Cheryl: 

And us overachievers don’t ever like to admit that.

Kara: 

No. And then, it’s like, you know, this is like May, mid-to-late May when I was diagnosed, you know, so we’re going through summer. And by Labor Day, I ended up with a severe inflammation in my liver that required a liver biopsy and the whole shenanigan. You never want to be the interesting patient. I’m sure all of you listening already know this, but you never want to be the interesting patient. And they’re saying, “Hey, let’s send your liver off to the National Institutes of Health because we want to just, you know, double check or kind of make sure of what’s going on. And because this inflammation looks funky.” But it turned out —

Cheryl: 

Yeah, you never want to hear, “That’s weird,” right? Or my dentist saying that before, mid-filling.

Kara: 

Especially from the junior faculty that was your, on your team as an intern. Like —

Cheryl: 

Oh, I cannot imagine. Or like, “I haven’t seen this before!”

Kara: 

But yeah. Yeah. So, it turns out the supplement I was on, probably in combination with, you know, my immune system not being normal at baseline, resulted in the liver damage, which has healed. Thankfully, the liver regenerates very nicely. But that was pretty scary.

Cheryl: 

When I think — this is another episode. I want to do an episode of how to not fall for a wellness scam, because — 


Kara:

We can talk about that. 

Cheryl:

That’s a whole — I know, you and I could talk for like 10 hours about this. But, and I don’t, I’m not saying that the supplement you’re taking was a scam. Like, there are, there’s a huge continuum, you know. 

Kara:

Yeah. Yeah, yeah, absolutely. 

Cheryl: 

But a lot of people, you know —

Kara: 

It had really great marketing.

Cheryl: 

And they, and in your case, well, there’s very few other things that are like, available. Like, it’s not like, “Oh, you have these like 19 different medicines, like evidence-based medicines you can take, or you could try the supplement.” Like, if you had that choice, you would obviously probably have chosen the Western medication or the medication that was like —

Kara: 

Well, and I mean, it was on the Plaquenil or hydroxychloroquine already, but yeah, it was kind of like, well, is this going to be enough? Like —?

Cheryl: 

Yeah, yeah, you’re like, why not? It just, it seems natural, if it’s natural. 


Kara:

Yeah. Yeah. 

Cheryl:

Yeah. Oh, my gosh. I mean, I just think it’s very — I don’t know if this is gonna sound like patronizing. I’m a little older than you, but it’s very brave for you to talk about that as a doctor, because I think a lot, there’s a lot of shame with anyone who’s tried, who’s gotten hurt by trying a natural method.

Kara: 

Well, what I think, you know, what frustrated me the most, is when I reached out to the company, it was crickets. And I think that’s, that’s where, you know, I come from sharing my story is just that we need to be conscientious consumers, because, unfortunately, there aren’t, there aren’t great protections in place. So, we kind of have to do our due diligence as best we can.

Cheryl: 

Yeah. I mean, you’ve spoken eloquently on this before, but, you know, the supplement industry is not regulated, you have no idea what’s in them, and you have no idea. At least with methotrexate, you know it’s a known side effect. It’s a known side effect profile. And that’s scary to have to look at in the face that this might happen to you. But with a supplement, it’s so unknown. Like, to me, it’s like I’m like a freaky person who’s like more scared of supplements, basically.

Kara: 

And that’s actually where I am now, right. Do I still take a couple of things? Yeah. But I also am like extra particular like, you know, like, it’s stuff that has good science behind it. And that I, you know, like for instance, like fish oil, vitamin D. And then, yeah, I admittedly was taking a hair, skin, and nail type product.

Cheryl: 

Oh, yeah. Like the biotin. Oh, sorry, I don’t feel like I should say it.

Kara: 

I will say the name but, you know, not to endorse it. I don’t get any kickback from them. I’ve been pretty conscientious about that. But Nutrafol, which is one that, at least talking with my dermatology colleagues, they kind of say, “Hey, this is like, if you’re gonna take one, there’s pretty good science behind it. It’s tolerated pretty well.” And they have specifically a postpartum nursing version that a colleague friend developed the formulation for. And so, having had postpartum hair loss, and then kind of that stress hair loss after I had that big flare right on top of one another, I had pretty significant hair loss. And so, I was trying to minimize potential for that happening, you know, over and above the normal, after all.

Cheryl: 

Is there a name for what happened to your liver? Sorry, not to ask —

Kara: 

Oh, it was called an acute hepatitis, like a drug-induced liver injury. About 20% of liver injury is due to vitamins and supplements.

Cheryl: 

Really? Oh, my gosh. I have a colleague whose child went into acute liver failure out of like, literal nowhere, but he got a transplant. But yeah, it was the scariest thing. Anyway, you don’t want to hurt your liver. I’m not laughing. But just, it’s, yeah. And I don’t want to, you know, again, there are some stuff. There are supplements that are more well-regulated, like I take magnesium and vitamin D. And they’re from places that my doctor’s medical team — I make sure they know what dosage I’m taking. And they are verifying, you know, so it’s not, I don’t mean to like slam on supplements. It’s just really important. Like, someone criticized in a feedback forum for the Arthritis Life Hack Extravaganza. They’re like, seemed like you guys are all like, seems like you were biased towards like medications. It’s like, if you’re talking about rheumatoid arthritis, in particular, it’s like, I have a moral duty to like — I’m not doctor, obviously. But if I’m giving you like general patient education, like I’m not going to pretend that there’s equal evidence on both sides. It’s not like a — 

Kara:

It’s not. 

Cheryl:

Yeah, it’s not equal. Like, the supplements don’t have the same volume of evidence. When they do, I will take them and, you know, I’m motivated to manage my disease as best I can.

Kara: 

Here’s the reality too, when it comes to, you know, there’s this perception that doctors pick particular medications, because we get like a certain amount back from drug companies. We don’t. Occasionally, doc’s will, you know, maybe go to a pharma-based dinner for like education or partake, and all of this is documented. And you could actually look all this up, or participate in research that is funded by Pharma. Sometimes there are medications that are donated or what have you for trials and so forth. You can look that all up at CMS, which is like the Medicaid service kind of website. And you can look up my name and see that I did get some help with travel to the national meeting when I was a fellow from some company, I don’t even know what company, everyone got from a different company. But what you don’t get in the vitamin and supplement industry is the transparency to say most of these folks are making somewhere between 30% to 50% commission on the products they’re recommending. 

Cheryl:

Yeah, so they’re not —

Kara:

And I don’t get anything for recommending Plaquenil, or methotrexate, or Zyrtec; Cetirizine. I generally say generic stuff.

Cheryl: 

Oh, okay. Oh, sorry. Thank you, I think this really is — I think, if you don’t take, you know, we can get into the weeds and be like, you know, what percentage of what causes what, but I think it’s like, at the very most basic level for patients, I think, if you’re confused or overwhelmed with all the different treatment options, I would just say, don’t only compare the known side effects of a medication with the potential benefits of a supplement. Like, you have to do a side-by-side. Like, the — and don’t think that because something is natural, that does not carry any potential harms. Because, you know, poison is natural. I mean —

Kara: 

Too much oxygen. Too much water.

Cheryl: 

It’s very hard to counteract the ‘Natural is better’ bias. 

Kara: 

I think there’s something innate about that.

Cheryl: 

Yeah, yeah. I think it’s like, there’s a whole field, actually, I very briefly studied it in my undergrad psychology, so not like even at high level. But it was like health promotion and health detection behaviors and the different kinds of framing, like gain framed versus loss framed messaging, like talking about toothbrushing. And like, ‘If you don’t brush your teeth, you may experience X-negative thing’, you may experience a painful cavity, versus ‘If you do brush your teeth, you will avoid the painful thing.’ It’s like, there’s actually like different efficacies of different kinds of message framing. So, those of you in like health, health — what is it — health promotion psychology, it’s really fascinating. Yeah, it’s deeply — I think it’s the fact that you’re putting something in — like, I think the other element when it comes to like methotrexate, that’s the one I think about a lot with rheumatoid arthritis, and it’s like, let’s just say not even about the natural supplements versus methotrexate. Let’s just say methotrexate versus nothing. Let’s say you just, you’re scared and you don’t want to start it. You’re gonna see if the disease just gets better on its own, or through exercise, or nutrition, or you know, vegan diet, or whatever you want to do. When you put something in your mouth or you inject it in your body, you are thinking actively about the harm that that could cause you and the benefit that could cause you, but when you’re doing nothing — like you’re not taking a medication — it’s very hard to conceptualize that that is carrying a risk. 

Kara: 

Yeah, it’s like placebo versus nocebo. 

Cheryl: 

Yeah. And I think people don’t truly understand that rheumatoid arthritis is a progressive disease by definition. It will get worse if you don’t slow it down. So, you are risking — 


Kara:

Risking permanent damage. 

Cheryl:

Yeah. Is Sjögren’s considered progressive, now that we mention that?

Kara: 

Typically. Though it’s a bit nebulous.

Cheryl: 

Okay, so first, it’s kind of like, I know like with MS, it’s like, there’s buckets, right. There’s like the relapsing remitting, and then there’s like the primary progressive, and then there’s the whatever other ones — so, I’m not doctor, I can’t remember all this.


Kara:

Yeah, it’s been a long time since I studied. 

Cheryl:

Well, anyway, so think — I’m sorry, we went on to my soapbox — not my favorite. All of them are my favorite children, these soapboxes I like to go on with my amazing guests. But we should have another, yeah, another episode. If, if you have time later, maybe a panel discussion about how do we wrap our heads around, you know, the wellness claims, and the —

Kara: 

I’m gonna put you on the spot. Let’s do it for the summit. 

Cheryl:

Yeah, I’m around!

Kara:

And then, we’ll put it on the podcast or something.

Cheryl: 

Because it’s really about being able to run like, risk-benefit analysis. And for each person, it’s different. Like, in Acceptance and Commitment Therapy, we talk a lot about, like, what’s workable for you, like, and, you know, it might be for one person — like, I thought of an example the other day, because like, one person might say, you know, “I love going to Whole Foods, I have the time and the money to go to Whole Foods and cook a totally organic la-la-la diet.” And someone else might say, “In the context of my life, I would rather not spend the time cooking and in making the food and obtaining the food, you know, however, I can; not think about food. I’d rather take the medicines that could potentially theoretically achieve the same outcome.” And there’s nothing wrong or right about either one of those. But anyway, yeah, let’s do it. Let’s do it. And so, okay, rapid fire time. This is the last thing before we can wrap up. Do you have time? 

Kara: 

Yeah. This is when I get to put my pageant hat on.

Cheryl: 

Yes, yeah. Yeah, put it on if you want to. What would be some of your words of wisdom, if someone’s listening who just got diagnosed with Sjögren’s?

Kara: 

My first thing, and this is actually what we tell interns or brand, you know, brand new doctors is to take your own pulse. Like, what are you supposed to do before you run to a code? You take your own pulse.

Cheryl: 

Like, check in with your mental abilities?

Kara: 

Take a deep breath. Just a deep, deep breath. 

Cheryl: 

I didn’t know that was a saying. Sorry. That’s really cool. 

Kara:

Oh, yeah, yeah. I thought you meant like, check your own pulse. And this is like me having a chronic illness. I’m like, oh, yeah, you gotta like playing making sure you’re not having a medical —

Kara: 

So, what I mean by that, you know, for everyone is just to, like, take a deep breath, and you have already survived the hardest days you’ve lived through, and you will continue to persist. And, and yes, there are going to be great days, and there are going to be real craptastic days. That was going to happen with or without this disease, too. This is just, you know, a new label. It maybe explains things that you have been wondering about. And just, just try to take a deep breath initially.

Cheryl: 

That’s so important, yeah. And remember that your life wasn’t more valuable before this diagnosis, and it’s not less valuable, you know, but there’s so much internalized ableism we have to fight, you know.

Kara:

Oh, yeah. 

Cheryl:

Thinking, “Oh, I’m less than; I’m not Superwoman anymore.” I still have that complex.

Kara: 

The other like in this is something that I think is just more of an overarching philosophy that’s helpful for life. I am in the midst of listening to the book ‘The Gap And The Gain’. And essentially, it’s this idea that in life, we can measure ourselves against the ideal or the perfection or we can measure ourselves from, you know, where we were, and, you know, and kind of more of that growth mindset, right. And if we can stay in that gain, which is comparing where we were and where we’re going, being driven by things that we want versus what we need, and things, you know, rather than the gap between where you are and perfection, that can be really helpful. And you may not be ready. You may not be ready for that, right, right after you’re diagnosed, right, but like, just playing around with it or kind of experimenting with like, “Yeah, this totally sucks. Is there anything that is like, even the slightest little, like, slightest little glint of light in the darkness?”

Cheryl: 

Yeah. Is there something I can learn from this or grow from? Yeah, I like that idea. And do you have a favorite tool in your Sjögren’s management toolbox?

Kara: 

My water bottle, which I don’t have right now. I have another cup, but I have this Owala water bottle. Again, not sponsored. But it has like both a straw and it has like a spout. So, it’s great for working out and I tend to gulp more water as opposed to sipping it. And so, I think I stay better hydrated. It’s also metal, which I appreciate, like stainless steel as opposed to plastic because I hate when it has that plasticky taste.

Cheryl: 

Yeah, that’s the sensitivity a lot of people have. And then, you mentioned ‘The Gap And The Gain’ as a book that you’ve liked. Do you have a favorite movie or show you’ve watched recently?

Kara: 

Ooh, hmm… Emily in Paris.

Cheryl: 

Oh, that’s — I know that. Those ads I was getting, I haven’t watched it, but.

Kara: 

The action is so fun. And my husband and I got engaged in Paris. And so, like, the city has a little bit of sentimental draw. We were pre-pandemic, you know, like, years ago had said, “Oh, for our 10th wedding anniversary, we’ll try to go back.” Instead, we had a third baby. So, we’ll get back there. It just wasn’t for our 10th

Cheryl: 

Yeah, you’ll get back there. Yeah, yeah. Happy 10th — was your 10th last year?

Kara: 

This last September, yeah.

Cheryl: 

Ours was last May. That’s so funny. Yeah. 

Kara:

Yay for 2012! 

Cheryl:

It’s an auspicious year. Yeah, 2012 was a good year. Yeah. And then, do you have a favorite like mantra or inspirational saying when things get tough?

Kara: 

This is a good one. I mean, this isn’t like necessarily a snazzy quote. But what I’ve been thinking about a lot lately is that little bit, those little acts of rebellion that I would, you know, do occasionally as like a teenager, you know, or I see like that little glimmer in my four-year-old’s eye of like, when she looks at me and has that like, like, ‘I know you told me no, but I’m gonna do it anyway because that’s what I want’, right? I am trying to channel that energy and defy what people expect of me as an academic physician, or Sjögren’s patient, or a mom of three, or a pageant queen, or, you know, a business owner.

Cheryl: 

A nice Midwestern girl.

Kara: 

Yeah, I really have been having fun with this idea of trying to disrupt others’ expectations and really mix things up a little bit.

Cheryl: 

You’re a rebel. I like it. I like it.

Kara: 

Just a little. Like, channeling a little bit of that energy because I think, you know, I had a meeting a couple of weeks ago and things didn’t go exactly as expected or how I would have liked, right. And it was just like, you know, like, it was all that much more incentive to like, really do more, be more, you know, like, really see this vision come to fruition.

Cheryl: 

I love it. I love it. You’re gonna like, you have such like sweet and kind exterior. It’s like, you’re like, covert rebel. I love, like —

Kara: 

Just a sprinkle. Like a sprinkle, you know, like, I think you get what you get right. But there’s this little sprinkle of you know, occasional sass, occasional, you know, like, pettiness; just a little.

Cheryl: 

I like it because it’s about, yeah, embracing, you know —

Kara: 

Human. Like, human aspects, right? Like, we all have our faults and.

Cheryl: 

Well, being an advocate requires you, right, because you — being an advocate requires you to go, you know, to say, “This status quo is not okay, I’m advocating for something better,” you know, that is a rebellious act. And what’s something that’s bringing you joy right now?

Kara: 

Hanging out with my kiddos, most of the time. 

Cheryl: 

All moms are like, “Yeah.”

Kara: 

Yeah, in particular, like, with my girls, it’s bedtime story. Like, I adore reading with them, and doing silly characters, and stuff. And then chasing after my youngest, Oliver. I was — and this is a little deep, but I was today, reflecting on, you know, like, my body has changed considerably after I had him. I still, you know, have excess, you know, kind of 20, 30 pounds up from where I was before I had him. And that means, you know, like, despite all the thought work we do that still, like, you know, it’s different, right? And I was trying to think of how can I, how can I like, flip when I go into these negative thoughts, right, and overthink things. Like, how can I work on adjusting that, because it’s not how I want to feel, but sometimes go into that circle. And so, just like looking at his joyful little face and like, chasing after him. It’s like, oh, this is fine. Like, and I know that I’m eating healthy, and I’m moving, you know, doing all these things I need to do and letting go of those preconceived notions of what is, you know, what I should be or what size I should be. Like that, I’m hoping that that will, I think it will be helpful, like, just seeing that little, little smile.

Cheryl: 

And seeing the world through his eyes. Like, if you were 20 pounds lighter, would it mean anything? Yeah, like he doesn’t care. Like, kids don’t care what you look like.

Kara: 

We’re still nursing. And so, if I were like forcing it and doing some of those, you know, unhealthy diet culture-y type things, it’s just going to impact our, you know, that relationship I have with him and I don’t want that.

Cheryl: 

But it’s hard. That was in our Rheum to THRIVE support meeting yesterday. That was a big theme of the ways that these rheumatic diseases or inflammatory autoimmune conditions affect your body mass, whether it’s unintended weight loss with rheumatoid arthritis, where you feel weak and small, or unintended weight gain due to prednisone, or just difficulty with activity, and it’s hard. It’s so loaded. It’s such a loaded emotional place, so. Yeah. Thank you for sharing.

Kara: 

We’re doing the work. 

Cheryl:

Yeah, you’re doing the work. 

Kara:

We’re on the journey, right? 

Cheryl: 

Yeah. Yeah, yeah, absolutely. Okay. And the last thing, what does it — this is just a little meaning of life question — what does it mean to you to live a good life and thrive with rheumatic disease, or autoimmune disease?

Kara: 

So, the book that I’m listening to just asked me to do this today, too. Really, for me, my focus on — in this year in particular — is making active decisions that are in alignment with my values. And I think that will be successful. So, things that are going to allow me to spend meaningful time with my family, making decisions that are overall good for my health and well-being so that I can be there for them, you know, those. And continuing to serve the world with empowering education and building community, in particular within the Sjögren’s community.

Cheryl: 

That’s beautiful. I love it. I love it. Where can people find you online?

Kara: 

Yeah. So, we updated the website. So, it’s drkarawada.com, and that’s where you’ll find all sorts of things where you can work with me, podcast, and I have — 

Cheryl:

You have your own podcast! 

Kara:

Yeah, yeah, The Crunchy Allergist podcast, which may we’re in the process of renaming as Becoming Immunocompetent. Because I think that that better encompasses what we talk about. And so, over at the website, you’ll also find I have The Crunchy Allergist library. So, essentially, it is a list of a lot of the books that I have read and have really influenced how I talk to my patients, things I do with my own life, and things — I got certified as a life coach last year. So, some things kind of related to that. Things that helped me in my lifestyle medicine certification. And so, that is a great resource that y’all can hop over and download and get on the newsletter. I try to email like once a week or so to keep people up to date on what we’re up to. And then you should join us for the virtual Sjögren’s Summit, April 1st and 2nd. We’re going to have essentially a Pay What You Can option. So, if you’re unable to pay, like, you can get in for free. And one of my key values actually is transparency. That’s one of my biggest frustrations at the medical field and wellness industries. And so, we’re calculating essentially how much it is for people, you know, like to host it on the platform we’re using, and then like the labor to go into it so people kind of know how much it actually costs. And then, if folks are able or want to, we’ll be able to help, you know, pay it forward to someone who is unable to pay. So, those are, you know, things that I’m really excited to, you know, like I said, just trying to make those decisions that are in alignment.

Cheryl: 

I love that. There is something so, to me, strange about so many — and I’m sorry, I don’t, I’m not calling out anyone in particular, it’s just something I’ve noticed. A lot of people that are like kind of starting their own. I think 80% well-intentioned people, maybe 99%, not people trying to scam each other, but like people are trying to do like their own health coaching business. So, they have a system that they’ve developed that they think is going to help people with autoimmune disease, you cannot find what these things cost. You’re like, where — what is the price? Like, “Oh, you have to hop on a discovery call with me to make sure that —” and I get, I totally get that for certain kinds of programs like high ticket offers, where you do want to make sure that the person is the right fit for you. But it’s — same thing to me is I’m like, look, my Rheum to THRIVE program cost $400, or you can do the monthly payments. Like, I’m not going to just be like, hiding that stuff. I mean, I did — I took some, you know, when I started offering like, paid programs, I took some business classes, and I got all the advice like, “Oh, don’t tell them what it is until you’ve created this insatiable desire for it,” and it’s it’s not me. That is not my personality.

Kara: 

And my stuff has evolved in that too. You know, like, you get this advice, but then you also like, eventually start to stand on your own two feet and realize, like, oh, that doesn’t sit right, right. Like, if it doesn’t sit right in your nervous system, your heart, your gut, whatever you want to call it, right, like, I’ve been trying to, like, let go of that. And just lean into like, who am I? What do I stand for? And, you know, take bits of advices, you know, take what sticks, and then get rid of the rest.

Cheryl: 

And that’s true, I should, I should reframe what I’m saying just to say that, if that feels in alignment to you and your value, and that makes sense to you, there’s no problem with that. It’s just for me, it’s like, as the potential client, I’m like, I am left feeling confused and concerned if somebody has buried the price of their programs and made it so that you have to talk to them before getting it. That to me is  — that, to me, that doesn’t resonate to me, and that I’m not that person’s ideal client, you know. So, that’s okay. People find who they are meant to learn from. So, I just, it’s so funny, I keep seeing it. I’m like, “Oh, I’m just curious what this program is like,” because I might, you know, I often will tell people, because my Rheum to THRIVE is really a comprehensive overview, you know, of the tools to manage pain and fatigue and the lifestyle factors, but it’s not a deep dive into any one of them. So, if that’s what— if you want a nutrition only program, you know, if you want, like, I want to take 12-weeks and delve into that, like I have, I will refer people to specific programs. But I want to, like know that it’s something that’s not like, exorbitant for the person or that it’s, you know, I want to be able to just understand, yeah, the general pricing. And I’m like, why aren’t you telling me what your thing costs ‘cause I’m so confused. Anyway. Sorry, little rant, side rant. Okay. So, thank you for your time. 

Kara:

Thank you. This was so fun.


Cheryl:

Yeah, no, it’s so fun. We have so much to talk about, we actually did stay pretty on schedule in terms of like content, what we talked about, but I love their little side rant about the American healthcare system, and then the wellness kind of pros and cons. Like, obviously, the reason so many people with autoimmune diseases turn to the kind of the wellness industry is that they’re not getting adequately served by traditional health care, you know. I’m sorry, 20-minutes every 3 months with a rheumatologist, no matter how angelic my rheumatologist is. She’s literally an angel. She’s like, the most wonderful —

Kara:

There’s not enough time.

Cheryl:

It’s not enough time. Like, you can’t tell — send people off, it’s like, what if you had cancer like, “Okay, just come back in five months.” Like, you’re like, what are we supposed to do? Yeah, anyway, side-line. Sorry. So, you’re doing amazing work. I am excited for this Sjögren’s Summit, and I will let you go because you have a million things —

Kara: 

And we’ll chat about who, wow we want to do the panel.

Cheryl: 

Yay, okay. Bye-bye for now. 

Kara:

Bye. Take care. 


Cheryl:

You too.