Lupus: "We didn’t choose lupus, but we CAN choose our journey"
Published 3 Nov 2023 • By Lizzi Bollinger
Selena is a dog lover and a proud lupus warrior who is dedicated to coaching women living with lupus, educating them on how to reclaim their lives.
After being diagnosed at the age of 24, Selena learned to listen to her body and developed strategies to mitigate the impact of lupus on her daily life. Now, she teaches other women these strategies as part of her Thriving With Lupus program. Her one-on-one coaching sessions provide a framework to other lupus warriors on how to thrive alongside the disease.
Read about Selena’s journey!
Hi Selena, Thank you for agreeing to tell your story to the Carenity audience.
To start, could you tell us more about yourself?
Hi there! I'm Selena. I am a proud lupus warrior, passionate advocate and dedicated coach for women living with lupus. My mission? To empower them to reclaim their lives through individualized lifestyle and impactful mindset shifts. When I'm not busy pouring into our Thrive Tribe, you'll find this dog mama loving on her Aussiedoodles, Rosie & Leo. After a rewarding 6-year chapter as an elementary teacher in the hustle and bustle of NYC, I recently resigned to pursue my passion of guiding fellow lupus warriors to take control of their journey and elevate their well-being through their journeys, helping them break free of limiting beliefs and live the full and thriving lives they deserve. Florida is where I now call home, where I can prioritize my health and be closer to family.
Could you tell us about your diagnosis? How did you react?
I was diagnosed with lupus (SLE) and lupus nephritis in November 2019. My noticeable symptoms started in May 2019, when I was experiencing swollen lymph nodes and developed a rash on my ears. Fast forward to August 2019, I took a vacation to Mexico and upon return I experienced a butterfly rash across my face. At this point, I had no idea that it was a butterfly rash and was attributing it to a severe sunburn. After seeing a dermatologist and being misdiagnosed with rosacea, I was given a topical treatment that did not seem to help. At the end of the same month, I was getting ready to go on a weekend trip when I noticed a bump on my ankle. I was under the impression that it may have potentially been a bug bite, so I took myself to the emergency room to get examined. They did not run any labs and told me that they did not see any bite marks, so it was probably an allergic reaction and to take some Benadryl. Over the weekend, the swelling rapidly traveled up both of my legs and my torso. I gained about 20 pounds of weight in water retention. I made an appointment with my Primary Care Physician, who ran some labs for me including an Anti-nuclear Antibody panel. Based on my ANA results coming back positive, he referred me to a nephrologist, hematologist, and rheumatologist to receive more in depth testing. After a few hospitalizations, extensive lab work as well as a kidney biopsy, I was diagnosed with lupus nephritis and SLE. My family and friends were very present for me on the diagnosis journey. Of course my parents were both scared in ways that I’m sure they didn’t express, but it was definitely helpful to have their support on the diagnosis journey as I had no idea what to expect.
How long did it take to be diagnosed with lupus? How many doctors did you see? What tests did you have to take?
My journey to my lupus diagnosis, like for many others, was not a clear path. Over half a year of pushing through, advocating for my own health, and bouncing around physicians, specialists, having to navigate research and the advice of medical professionals. It took me 6 months to receive a diagnosis from the onset of noticeable symptoms. I saw a rheumatologist, nephrologist, hematologist, dermatologist, and multiple ER physicians to rule out a number of conditions that lupus can mimic. My tests started with an ANA test, which then led to a panel ran by a hematologist to rule out blood diseases/cancers, a Lyme panel, as well as an autoimmune disease panel. My diagnosis came after markers like my C3, C4, anti-ds DNA antibodies came back consistent with lupus ranges as well as a kidney biopsy and urinalysis results that were consistent with lupus nephritis. My personal path taught me persistence, resilience, and the profound value of listening to my own body.
How did you feel when you were diagnosed? Did you receive all the information you needed to understand the disease?
It was overwhelming to say the least, it’s interesting to feel validation and clarity for a split second before the overwhelm and worry settle in.
At the time of my diagnosis, I knew two women in my age range that were also diagnosed with lupus but knew nothing about what they went through on their health journey. I was definitely not surprised upon diagnosis as all of my research during the testing phase led to SLE. Many people in my family have autoimmune diseases, so it was not a shock as autoimmune diseases can be genetic. Looking back on symptoms I had of lupus without recognizing it, I definitely am convinced that I’ve had lupus or signs leading up to it since high school. I struggled with significant hair loss and memory issues as early as 2009.
When I was first diagnosed, lupus was unfamiliar territory and there isn’t typically enough time during doctors appointments to receive a lifetime of information. My diagnosis pushed me to new heights, I found myself immersed in research, leaning on the strength of supportive communities, and master the intricacies of this journey. And now, I aim to be that guiding light for many others in the same boat.
What is your current health management regime? What do you think about it? What are your treatments? Are you satisfied with them?
I’ve adopted a holistic approach to manage my lupus. It's not just about medications and appointments, but also lifestyle adaptations, mindset shifts, and a strong support network. I’ve refined a regimen of diet, exercise, and mental health practices that keep my symptoms at bay and allow me to live a life defined not by lupus but by my passions and aspirations.
What is or has been the impact of conditions on your schooling, professional or social life? What do you think is the most bothersome part of your daily life?
I was diagnosed with lupus at the age of 24, during my second year of teaching and my first year of graduate school. As someone who is very social, loves going out and as well as being active, my diagnosis took a hit on my life in many different ways at the beginning of my journey. I had no choice but to say "no" to things I typically would have said "yes" to prior to my health complications, and found myself in situations where my relationships were always being refined as not everyone was in a place to be understanding of this new chapter of my life that I had entered.
The initial impact was significant; juggling the range of emotions that come with the diagnosis, evolving treatment plans, and the general unpredictabilities of flares - all while maintaining professional and academic commitments was.. challenging to say the least. But with time, I've learned to adapt, listen to my body, and have developed strategies to mitigate the impact on my daily life. I’m happy to say that although my diagnosis was life altering, I’ve learned to adapt my life in ways that allow me to thrive and still live a full life while also making sure I am simultaneously honoring my body’s needs.
You are a coach for those living with lupus. Can you tell us more about this?
Absolutely! As a lupus coach, I focus on empowering fellow lupus warriors to thrive alongside their lupus diagnosis. My “Thriving with Lupus” program, built in part from my own transformative journey, is designed to allow access to up to date knowledge, actionable tools, expert resources and a supportive community to navigate their individual lupus journeys. The response has been incredible and nothing short of unimaginably fulfilling - having these warriors entrust me as they reclaim their lives is profoundly rewarding.
You also have an Etsy shop that sells gear to raise awareness for lupus and chronic illness. Where do you get inspiration to add to the store?
I launched my Etsy shop in November 2021. The inspiration was well connected to my advocacy journey, as I love crafting and wanted to find a way to connect that fun passion to lupus and chronic illness advocacy. There are so many ways for warriors to share their story and raise awareness for chronic illnesses, and wearing their disease across their chest is a simple way to do their part and raise awareness in a way that feels comfortable for them. My shop has simple designs, as I’m a simple gal, and the truly the intention behind wearing one of our designs is for those who pass you by to either take a mental note of what they see or ask questions. Either way, the word is being put out there.
I also do have a line geared towards families as another way to raise awareness for chronic diseases, organ transplants, etc. Having support is a very important part of the journey, and it’s just one way for family members and friends to show their support to their loved ones who are navigating their own health journey.
What advice could you give to Carenity members also living with lupus?
Embrace your journey with patience and compassion. You are your biggest advocate, equip yourself with knowledge, seek out support, and remember, you're a warrior. Every challenge is also an opportunity for growth, and in this community, you’re never alone.
Any last thoughts to share?
Thank you for giving me a platform to share my story and why it’s my passion to help others who are living with lupus.
I’m profoundly grateful for this platform and the opportunity to connect with fellow warriors. Through My Loopy Life, I've always aspired to connect, empower, and educate. We didn’t choose lupus, but we CAN choose our journey. My best advice - as a first step to bridging that gap from overwhelmed to a state of resilience, hope, and thriving, is finding the right community. That’s how my passion of wanting to help others with lupus evolved into the 1:1 coaching framework that is TWL, where through accountability, resources and support women are rewriting their narrative of what it means to be living with lupus. With every story shared, like yours and mine, we pave the path forward for all of us. Our lupus journey isn't just about enduring; it's about evolving, and together, we're flipping the script on lupus and stepping into a life where we can thrive alongside our disease. Lupus isn’t an ending, it’s an opportunity for a new beginning that we get to create for ourselves.
A big thank you to Selena for this interview!
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