Background/Purpose: Being diagnosed with Sjögren’s has been a life changing event for me.I was diagnosed in 2013 after suffering from various odd ailments. Ultimately, extreme fatigue, muscle pain and weakness led to my diagnosis. I spent 6 weeks with my legs feeling like I had just run a marathon. I was always on the move, played competitive tennis and had a corporate full-time career. I was a woman on-the-go…until I wasn’t. My internist confirmed something was amiss and that I had positive ANA and SSB antibodies, and, subsequently sent me for a lip biopsy and to a rheumatologist for further evaluation, which confirmed my Sjögren’s diagnosis.

Intervention: I was fortunate to have connected with a rheumatologist who was well-versed in Sjögren’s and is deeply involved in rheumatic disease research. She immediately started me on 300mg of plaquenil, which took several weeks to kick in. In an effort to stay on top of things I began making adjustments based on the 4 main pillars of my wellness: sleep, diet, exercise and stress reduction. I developed a strict sleep routine and equipped my bedroom with the essentials for restful sleep. I began working with a nutritionist and, on my doctor’s recommendation, went gluten free and reduced my dairy and sugar intake, though I still love dark chocolate M&M’s! It has been amazing to see the impact my diet changes have had on my inflammation. Keeping my body moving is key, even when I just want to curl up under a blanket. My exercise of choice is walking, and my preference is to be outdoors as much as possible. Lastly, I transitioned from my full-time corporate career to a more fulfilling career where I can manage my own calendar and stress. We call it Lisa 2.0.

Maintenance: Being diagnosed with a progressive disease only stressed the importance of keeping my health at the forefront of everything I do. With this in mind, those same pillars are my playbook – every single day. Maintenance for me is staying ahead of my disease. Sjögren’s is truly a game of whack-a-mole. Sjögren’s affects my bladder, nerves, eyes, and digestive tract. As these issues pop up, they need to be addressed immediately and I’ve had to endure numerous treatments as part of these processes. I don’t let my guard down and I am open and honest about what I can and cannot do. I’ve become comfortable accepting that “no” is a complete and acceptable sentence and I’m intentional with my energy and how I use it throughout the day. I’m aware of my productive times of the day and how to operate in low gear when I need to. I’ve been intentional in choosing doctor’s that are familiar with Sjögren’s and are compassionate to the complexities of this disease. Being surrounded by an amazing team of doctors has been critical to my health.

Quality of Life: I’m not going to lie and say this is all easy. I’ve completely adjusted my life to accommodate this disease. It affects everyone around you, and, let’s face it, it’s an invisible disease which makes it hard for people to understand that you feel sick when you look fine. I try not to focus on what I can’t do, and instead put my energy into the things I can do. When something new pops up, I allow myself a little time to mourn and move on. Life has changed and I need to keep moving forward. I have confidence in my medical team and my 4 pillars have served me well. I don’t allow Sjögren’s to define me.

« Back to ACR Convergence 2023

ACR Meeting Abstracts - https://acrabstracts.org/abstract/my-four-pillars-of-wellness-how-sleep-diet-exercise-and-stress-reduction-enable-me-to-define-my-life-and-not-let-sjogrens-define-me/