Piecing Together the Puzzle of Sjogren's
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I just wanna welcome everyone. I am so excited and honored to welcome each and every one of you to our 2nd Annual Virtual Sjogren Summit.
If we haven't met yet, Hello, my name is Dr. Kara Wada. I'm a practicing allergy immunology lifestyle medicine physician, I'm a mom of three, I'm a wife, and I'm a Sjogren's patient.
My nickname is the Crunchy Allergist, in large part due to my naturally minded and scientifically grounded approach to care. We have an incredible weekend in store with a little bit of something for each and every one of you.
Whether you are a fellow sjogie looking for connection or some ideas on how you can improve control of your disease, or if you're a colleague, my goal is that you are gonna walk away feeling more confident as you become immune confident. Standing tall, knowing that no matter what, you can embody your own version of Success with Sjogren's, whatever that may look like, whether it's knowing how to better identify and care for Sjogren's and your patients or walking away taking the next best step on your health and healing journey.
As we begin, I wanna connect with you about our shared situations. We are all members of the best club we never wanted to qualify for we're sjogies, we're spoons, we're invisible illness warriors, whatever you wanna call us, this community of ours is pretty incredible.
We're all humans with human heads and human hearts, and we're connected through our misbehaving immune systems. That's what we share. The ups and downs of living life with this unpredictable invisible illness.
So here's insight about how I've lived through a few of those ups and downs, and perhaps you'll hear experiences in my journey that will resonate with yours. This also will explain why my team and I have spent the last six months planning this incredible weekend for you.
Like most people, my memories come back in little snapshots. Short little snippets of images, sensations, and emotions. Each with an evolving impression and impact as I continue to grow and evolve both as a physician and a patient.
The First Piece: College and Digestive Agony
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In hindsight, I see these recurrent memories as puzzle pieces when viewed individually each leaves an unclear idea of what was going on, but slowly and surely as the pieces multiplied and began to fit together, a revelation and a diagnosis. The first piece.
I'm about 19. I'm in college. I'm sitting at the local fast food Chinese restaurant for lunch with my dad. I went to our local liberal arts college, in part because they offered me a full scholarship and I wasn't quite ready to leave the nest, and I looked forward to an occasional daddy daughter lunch date. Something that we had done periodically since I was four or five. I felt so loved, cared for, but I also recall this undercurrent of fear and anxiety in the memory I am picking at my cashew chicken, that was my favorite dish at the time. Avoiding any of the undercooked onion and broccoli, knowing that just a bite would leave me in digestive agony during my afternoon chemistry. Wanting nothing more than to curl up in the fetal position and wait out the hours of intense pain that would ensue.
Looking back, I never asked anyone about these symptoms. I just carried on ignoring my body's calls for help.
The Second Piece: Medical School and Crushing Chest Pain
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Now, fast forward a few years, piece number two, I'm now in medical school. I'm about 22 or 23. I'm studying in the library and interestingly, I'm only a few miles away from that restaurant, but I'm intensely studying for an upcoming exam.
I'm sitting in the library, it's sunny, it's warm, and it's quiet, and that is all contrasted by my crushing chest pain. I'm nearly in tears and on the verge of panic. I'm calling my mom convinced I was having a heart attack. Mind you, my mom is not medical. She's a lunch lady.
And in hindsight, I'm pretty convinced that that pain wasn't esophageal spasm, but it wasn't helped by my unmanaged mind, and my mom was no stranger to anxiety or attributing physical symptoms to it.
She talked me down from my panic state, reassuring me that I was indeed not having a heart attack, explaining that my symptoms were just in my head. Nothing to worry. That's what she was taught, and so that's what she passed on to me.
The Third Piece: Intern Year and Physical and Emotional Pain
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Intern year 26 now, piece number three. I hurt physically. I wasn't surprised to be exhausted all the time.
I was on call every fourth night, but I didn't understand why my body was so stiff and achy as an intern. There were countless hours of walk rounds, and I looked for every opportunity to lean against the wall or the computer on wheels to stretch my stiff low back. And looking back, I was not only hurting physically, but I was also constantly in a state of overwhelm and imposter syndrome.
I had no concept of self-care or self-compassion. I even recalled trying to tough out a bladder infection rather than ask to leave early to get the care I needed. This makes me realize now how bad that back pain must have been for me to finally make an appointment about eight months later into training.
My internist at the time recommended exercise and stretching. She suggested I take care of myself, but I think she knew I wouldn't have the time or rather make the time to come back. So she ordered some labs too. What I recall from those results were that my liver functions and my proteins were slightly off, and she asked me to get them rechecked, but I never did.
Instead, I kept leaning and stretching, and I always made sure I had a stash of ibuprofen in my white coat pocket.
The Fourth Piece: OB GYN and Symptoms Adding Up
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Number four, not too long after I have another memory, this is my doorknob complaint to my ob gyn. She's the doctor I'd known the longest, someone I really trusted, and it hurt after sex.
Something wasn't the same or normal, but as we know as clinicians, once our hand is on the knob, our brain is onto that next room, thinking ahead to the next patient. So rather than stopping and getting curious, why is my 28 year old newlywed dealing with this change, it was countered with a quip and a recommendation to use more lube.
Slowly but surely, the symptoms added up more pieces to the puzzle, and I was no longer able to wear contacts or mascara for fear of looking like a raccoon by the end of the day. I was scouring the local Zephora for the best lip balm. I didn't have Bexi's available to heal my chapped and bleeding lips. And my back pain mysteriously vanished with each pregnancy only to return with a vengeance after I gave birth.
I had more food intolerances and I even had an episode of idiopathic anaphylaxis requiring an EpiPen as an allergy fellow. That wasn't even enough to shake me awake. Pretty dense sometimes, at least the old me.
The Final Piece: Sjogren's Diagnosis and Liver Biopsy
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Three years ago, the final piece. I'm now 35. I'm a mom of two beautiful little girls, and I'm at the dentist. The hygienist is doing my routine cleaning. Your mouth tissues look dry. "Hmm?" I reply. Maybe I should get that checked out.
The pieces are finally coming together enough to see an answer: Sjogren's. It's funny now to think that such a small comment got me to stop gaslighting myself. I finally summoned the courage to ask my internist, new one now, to order the labs, and I rehearsed nervous to be that patient and she was skeptical, but finally, somewhat reluctantly ordered the labs I asked about. All while also trying to reassure me that my symptoms were just from being a doctor mom.
As I waited, the anxiety mounted. Internal dialogue, "I'm healthy, not a patient. I'm invincible. I'm too busy to be sick."
I kept hitting refresh over and over, and the email notifications from the patient portal finally arrived, and I see the red arrows. My SSA antibody was strongly positive. Relief, validation, and then fear. More labs confirm systemic Sjogren's.
A follow up call with my colleague, my friend, and now my rheumatologist signaled the start of a new daily regimen and hope for improvement. I doubled down. I started my hydroxychloroquine. I was ready to show Sjogren's who was boss. Exercise check, green smoothies check, super foods, of course. Then a few months later, the fevers hit.
I figured the two young kids in daycare, it was another daycare bug, but the fevers persisted and the fatigue was worse than ever. It was like walking through knee high mud, and every small task seemed like a bother. I had nothing left to give. I was going through the motions at the office and frankly at home too.
A week or so later, my urine turned dark. You can imagine the four letter words that were coming outta my mouth, now what? After countless tubes of blood and imaging, a few weeks later, I found myself in the pre-op area waiting for my liver biopsy, all the while realizing that nothing can make you feel less in control than being buck naked in a hospital gown.
I have a photo from that day and I look back at it from time to time. It's interesting to see how much has changed and I look back and see that smile on my face in the picture. And I remember the warm peeled up blankets and the friendly reassurances from the pre-op staff that were so sweet, but they weren't enough to stop my teeth from chattering.
And it wasn't just the cold. I was scared. I was nervous. I was gonna have a big needle put into my belly, and I didn't know what was going on. I was yellow and every inch of my body itched like a million little bugs crawling under my skin and my liver on it's way to failing and we had no idea why, an infection, medication, supplement I took, was it something more serious like cancer, autoimmune hepatitis?
Advocating for Oneself in Healthcare
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I hadn't slept, I was exhausted. I also had a nine month old at home, and frankly, I was pissed off. I saw the lengths to which I had to advocate for myself to get the care I needed. Multiple calls to get an appointment, the waiting, group texting with my colleagues, second opinions. I guess I had the audacity to be seeking answers for questions that didn't have a straightforward answer.
I'm sure your number of you can relate to that as well. Despite living in a time where we know more than we've ever known about the human body. Too often we leave our medical appointments feeling frustrated, confused, and overwhelmed. Navigating the healthcare system can leave us feeling completely powerless, even as a doctor, even as an allergy and an immune system expert, working at a big academic medical center, calling my doctors, both colleagues and good friends, knowing how the system worked, I still struggled to get the care I needed care. I knew my doctors wanted to provide, and if this was the case, it forced me to ask the question, what does this mean for everyone else? Those who have vague symptoms, normal labs, and play the game of hot potato being passed from one specialist to another.
When we lean away, we're closed off as rather than curious as physicians with ourselves, with our patients, we miss opportunities for answers and healing. We gaslight, we inflict clinician associated traumatization. That's the new term for medical gaslighting.
The Importance of Therapeutic Relationships Between patients and healthcare professionals
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When I finally got answers, it was in large part due to my perseverance, but let's be real. It was also in large part due to my privilege and sadly, it wasn't until I found myself in the position of patient rather than just physician, that I realized how much each added layer of complexity just chips away at the essence of what healthcare should be.
An exchange of information, at times incredibly personal, vulnerable information. And this exchange when functioning well, requires significant openness and trust between the two parties. We have the person who is expert in their lived experiences, the patient, and the person with education and expertise in healing, typically the physician or other healthcare professional.
And it takes energy and work to form these trusting, therapeutic relationship. But magic arises from our mirror neurons when we communicate, we connect, and co-regulate. And when this exchange goes well, we see the synergy that arises from it. This in part is the placebo effect. It's healing. At our deepest, most biologic levels, we are yearning to be seen, to be heard, and to be believed.
And it's only through my own healing, both physically and emotionally, that I have a renewed passion for leaning in, to staying curious and to realizing that even though we know more now than ever, our work is not yet done, and that is what this weekend is about.
Becoming Immune Confident, bringing visibility to this invisible illness, and building bridges between healthcare professionals and Sjogren's patients. We will do that through learning about the systemic nature of Sjogren's and the latest approaches to treatment.
We'll lean into one another, this community of sjogies and spoonie, and the healing that occurs from that human to human connection and those relationships.
The 2nd Virtual Sjogren's Summit Agenda
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As we kick off, I wanna bring your attention to our agenda. There is so much, and it could be really easy to click into that overwhelm mode, but I want us all to instead take a pause. I want us all together to take a deep breath in through our noses, all the way into our bellies and to hold it there for a few seconds and then exhale through your mouth. You can repeat that a couple of times. Instead of sitting in that state of confusion or overwhelm for any longer than necessary, let's make a choice together. Let's choose to keep on taking that next best step, however small, when we start to feel those sensations creep in, we'll practice the pause. We'll acknowledge the sensations, and we'll take that deep cleansing breath. Maybe we'll even take a sip of our water and take a little bit of action. Plus the sessions will all be recorded. So while you're attending these sessions, you can have a pen and paper handy to jot down a few notes.
I encourage you to start pushing yourself a little bit. Begin to challenge your limiting beliefs. Grab water and a snack. Better bet I'm gonna have some popcorn on the side to keep your energy up, and as you look through the agenda, pick out a few sessions each day that peak your interest. You can bounce between the two session rooms, picking whichever speakers and topics you are most drawn to and interested in.
The other thing that I am so excited about is our main stage events. So join us back at the main stage midday for our interactive panel discussion with my Sjogren's sisters, Dr. Sarah Schaffer of Sjogren's Advocate, and Dr. Susan Masterson, who's joining us this morning too, and our keynote on Integrative Pain Management by Dr. Delia Chiaramonte.
I also wanna say and share a huge thank you to my friend, colleague, and our sponsor as well, Dr. Diane Mercado Marmarosh, who is hosting our workshop on Brain Fog this afternoon. She gave an incredible version of this at the Physician Coach's Summit this past fall that I walked away changed from.
Now, the other thing that we have is our sponsor scavenger hunt and the scavenger hunts are going to qualify you to win prizes from our amazing sponsor. So we have two air purifiers from molecule that are valued at over $1,500. Together we have a humidifier from Care pod that is a great product.
We have some balm from Bexi's. We have some Beautycounter things from me. We have all sorts of goodies. We're going to give away some of our swag of which, if you wanna pick up swag, that is also for sale behind the scenes.
All of those are found over in the expo session. So on that left hand column, you're going to see all the different places you can navigate'.
So the educational sessions are going to be in the sessions tab. You can scroll through to see all of them. If you're going to go to a workshop this afternoon, that'll be in the workshops tab. As we end the day, we will have opportunities for networking in our lounges as well. You'll see separate little, essentially round tables or rooms where we can get together.
Now you're gonna score points in a couple of different ways. Interacting with our sponsors in the expo session, and also by attending the sessions themselves. So the more you learn, the more you can win, not only with your education, but also the prizes too.
All of this is really to help you on your journey to Becoming more Immune Confident.
I'm gonna share what I mean by that in my top tomorrow afternoon. So I am so excited again to welcome you all here and to get ready to launch us into our first session. But before we head to our first session, I want you to take 60 seconds right now to think about what you want to get out of this weekend.
This is how you're gonna optimize the time, energy, financial investment you've made into this weekend. Write down a few goals that you have for yourself this weekend. They don't have to be super specific, but do you wanna learn how to manage your nutrition or your sleep better? Do you wanna take active steps in better thriving in spite of your brain fog or executive dysfunction?
Then I would go to the brain fog workshop, right? Or are you going to find an accountability buddy at our networking sessions to keep the momentum up about what you're learning today and tomorrow. So let's write down three goals you have for yourself for this weekend, and then we will head over to the sessions and pick which one strikes your fancy.
Now, I want you to remember, as you are posting on social media this weekend, we would love it if you would use our event hashtag so when you're posting this weekend, please use the hashtag #VSS2023 and then go have fun in the sessions.
We'll see you back here midday for the panel discussion with Dr. Sarah, Dr. Susan and myself talking all about Sicca, Systemic Nature of Sjogren's, and Medical Gaslighting. Hope y'all have a great morning and take care.
Hey, everyone. I am going to ask you once again to go into Apple podcasts and submit a review of the podcast for me.
But first I'm going to share a review from Dr Lex RX.
"Dr Wada's unique perspective is amazing considering she's both an auto-immune patient and physician. Her experience, expertise and insight make this podcast so valuable. Keep them coming."
One other from Amanda Katherine.
"Wow. So informative. Thank you for bringing more attention to autoimmune diseases. Each podcast is so informative and well thought out. Very impressed with all that you do."
Thank you so much, Dr Lex Rx and Amanda Katherine. I really appreciate the feedback and the review. I want to incentivize you to leave a review, too.
So anyone who leaves a review between now and my birthday, which is April 6th, will be entered into a drawing to receive a box of all of my favorites.
If you've already reviewed the podcast, just hop back over and leave another review.
If you haven't left a review yet now is your time, you have a few weeks to do so.
I'm going to announce the winner through my newsletter email.
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Thank you so much because apple podcast reviews are one of the ways to increase how many people are able to access and see all of this education and information we're putting out into the world.
