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Steph Lee, Kaptain

Celebrate the Moment

Meet Steph, a businesswoman, travel industry expert, and lifelong Minnesotan (she grew up in Monticello and currently lives in Minneapolis with her partner, Paul). She playfully describes herself as “a woman working to accept her new life.” That life involves Sjogren’s Syndrome, mixed connective tissue disease, and seronegative rheumatoid arthritis, all of which are related to lupus. 

“The journey has been incredibly hard, emotional, but a learning experience,” Steph says. It’s been a wild one -- three years in the making. When she talks to people and describes living with a disease related to lupus, most have no idea what it is, let alone how life-changing it can be and that it’s a daily struggle. 

Steph says, “even my good days have pain, brain fog (confusion), and fatigue … just less than my bad days.” And she admits that this invisible disease can completely derail a person’s life.

That derailment was felt by Steph as she tried to understand what was happening to her, especially in the early days of the disease. She did a lot of soul-searching and tried wrapping her head around instances like why she couldn’t lift her leg, or why her speech slurred, or why she experienced pain everywhere. “Some of the doctors I went to see told me I should see a psychiatrist. Those were some of my darkest times and I left their offices feeling like I was in an abyss with no light, no way out, and no one that could help me. And I wondered if I was mentally unhinged and just didn’t know it.

Before her diagnosis, Steph was extremely active and social within the travel industry, having launched her own travel resource company and traveling all over the world. But when her disease came, it came on strong:

I was unable to care for myself, let alone run a company. Work was the last thing on my
mind as I tried to wrap my head around why I struggled to walk, why I was so short of
breath, and why a fork or toothbrush was too heavy for me. I went on medical leave and
stepped away from the spotlight for a year and a half.

Each day is different with her connective tissue disease. On good days, Steph enjoys gardening, going for walks, spending time with friends, or being outside with her dog. And on great days, she loves driving and going out on her own. 

But bad days are still there, too. At one point on her journey, Steph was so down on life with a bad flare that she sought out a Mindfulness Based Stress Reduction (MBSR) class. And that’s when meditation became an integral part of her life. She says, “It has completely changed the way I interact with my illness. When I have flares where I’m stuck in bed for days or months, I become a little Buddha and meditate (and sleep) the days away.”

Thanks to her MBSR class, Steph has a new perspective on life with this illness and it’s the reason behind her team name, “Celebrate the Moment:” 

Celebrate the Moment came to me when I thought about how I get through my daily battle with this disease. When I first got sick, my mind was thinking of the rest of my life being in pain, not being able to sleep, or sleeping for 18 hours, of not being able to do the things I loved like skiing or playing tennis or traveling, of not feeling like myself anymore or looking like myself. That’s really depressing, and honestly, it’s hard to not fall into a funk. 

My MBSR class showed me that no one knows what’s going to happen in the future and that letting my mind run away with itself was creating a bunch of undue suffering. I had pain with the disease, but I was making myself suffer needlessly. I’ve been learning to live in the present and celebrate all the small things!

While Steph acknowledges she’s lucky in having such a wonderful group of friends and family to support her, she encourages those living with lupus and related diseases to connect with others: “I think you can find a really empathetic community by connecting with others who have chronic or life-changing illnesses. Join a local support group, or if mobility is a problem, join an online community/forum or reach out to someone via email to be your email buddy.”

Thank you, Steph, for joining us to further the lupus cause! We look forward to seeing you and your team at Central Park in Maple Grove on Saturday, October 14.

Feeling inspired to join us for The Great (Point)8K? Register and create a team today!