Walk Ambassador Stacey Kennedy-Conner

 In Story Sharing Project

2021 Virtual run, WALK, ride ambassador, Stacey Kennedy-Conner. Team captain of Stacey’s Lifesavers and supporter of the LSI Associate Board team.

What kind of lupus do you have?
Systemic Lupus Erythematosus and Discoid lupus Erythematosus

When was lupus diagnosis?
July 3, 2003

How long did it take for a correct diagnosis?
Less than 1 year

How has your life changed?
Life has changed tremendously! I now have more challenges physically sometimes needing to use walking aids. I take over 10 different medications (and deal with their side effects). I feel like I spend a lot of my time split between work, home, and the doctor’s office! I have had to really manage stress as it is a gateway for me to have a flare. Overall, the biggest change is the greater amount of gratitude I have that I am STILL HERE!!! I am still here! Lupus has reminded me several times over (with life threating lupus related event in my life) that life is so short and precious and the moments that I am here is a gift. I do my very best (even on my bad days- my family makes sure of it) to find joy!

Does anyone else in your family have lupus?
My great aunt and a 3rd cousin

Do you find support from your family members with lupus? If so, how?
Yes, my faith, family and friends that have become family are the sole foundation of my support! I am supported mentally with verbal words of encouragement, laughs, tough talks, having a listening ear to vent to, and keeping me accountable! Physically being driven to doctors’ appointments, sending over warm meals, family flying in to spend time with me, my husband cleaning the house (that’s always a blessing) and making great meals (he is the most talented and handsome chef), family attending appointments with me for a second set of ears, and the list goes on! My support group is small but mighty and I’m so thankful to God for each of them! Lupus has taken a lot from me but having the support has made all the difference in feeling like, in knowing I can keep going! Whew, I’m grateful!

How did you first become involved in the Illinois Lupus Walk and the Virtual run Walk ride?
My family and I heard about the walk/run through other members of LSI and connected with LSI to participate! It was an awesome experience for a young Stacey! I got the chance to see people like me and be surrounded by so much joy and fun!

Why do you think the Illinois Lupus Walk and the Virtual run Walk ride is important?
This event is so important because it is a great way to educate and inform society about lupus! This is also an awesome time for individuals dealing with lupus to celebrate their journeys of survival with friends and family members and gain new friends! This is a time that people look forward to, this walk is a reminder to lupus survivors and our friends and family that we are cared for, loved, and that there is intentionality around awareness, and a fight for a cure!

How do you make the Illinois Lupus Walk and the Virtual run Walk ride personal?
Personalized t-shirts, family chants/cheers and words of encouragement about the importance of the day, and every family member taking on a responsibility for the day! Lastly a good at home cookout!

As a Team Captain, what are your goals?
To get people inspired, donating, aware, and excited to not only exercise, but to do so with lupus awareness in mind!

Has a lack of public awareness about lupus affected your quality of life?
No, I have been very fortunate to be immersed in settings (healthcare, family, work, school, church) that have been very aware and supportive.

How did you find the LSI?
My family and I first heard about LSI through my high school (who was also very supportive in my lupus journey).

How has the LSI helped you cope with lupus?
Let me count the ways! The biggest shout out to Mary! She always sends out information about workshops, quick to respond to e-mails, so caring and so reachable! LSI has given me the opportunity to meet other people with lupus, make great relationships, and really has made me feel not alone! LSI is a constant reminder that there is life after a lupus diagnosis!

What would you want the world to know about lupus?
I am not quite certain that I want the world to know anything other than what lupus is and how it effects each person dealing with the illness differently.

I think more than anything, I want lupus patients to always keep in mind that our diagnosis is not our destiny. That our difficulties alone don’t define who we are, yes, they may cause limitations but let us always, always find a way, in our own way to discover the joy in life. Maybe that means going to therapy, joining a support group, picking up a new hobby, praying, trying new recipes, a new workout regimen, going to school, and so much more! I acknowledge that this illness is like a rollercoaster…when you are down make sure you are taking the best care possible of yourself, but oh when you are up, be sure to find every way to enjoy life!

Join Stacey and hundreds of others by participating in the Virtual run WALK ride for LUPUS! www.lupuswalkil.org

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