“We got nothing to lose
We got nothing to prove
Shine like diamonds in the sky
Live it up, ’cause baby, it’s your time.”
From “Like A Champion” written by Haywood, Bebe Rexha, Leroy Sibbles, Buju Banton and Daniel James for Selena Gomez.
As a young girl, when I was diagnosed with the complex chronic autoimmune disease called Systemic Lupus Erythematosus, known as “lupus,” every aspect of my life changed immediately. Instead of drill team practice, debate club, and my after-school job at the local mall, my afternoons were now filled with doctors appointments, lab tests, and lots of rest to keep my disease manageable. The doctors told my mother that I would probably live another 5 to 7 years, though the treatments were harsh and hard on my body, but research was promising. No two cases of lupus are alike, and soon after the doctor told my mom, my mother told me, and together we decided that the doctor was wrong. I changed doctors. 40 years later, I am still here and striving to thrive.
I am not dead. Instead, I used my head and found a way that living with lupus could work for me. With my new doctors, I found a combination of conventional and alternative therapies that have helped me find a balance now as a woman who is not simply living with, but thriving with lupus. I participate in clinical trials, I advocate on Capitol Hill and City Hall for the lupus community. I am excited and filled with joy to celebrate “Lupus Awareness Month,” and this May, I will be raising awareness for lupus using slime – that’s right slime. I received a grant from the Community Foundation of New Jersey via the HealtheVoices Impact Fund. With my project, I will be sharing facts, information, resources and using slime and art to shine a light on Lupus and the autoimmune patient experience.
Slime isn’t what it used to be, instead of the icky sticky goo that you may remember, slime in 2023 is stretching beyond what it used to be. There are different kinds of slime, like cloud, butter, floam, bingsu, ice and more. I use slime to help me when my joint pain keeps my “range of motion” limited and even when I just need to relax and escape for a few minutes. The benefits of slime are incredible, I love how all the senses (except taste) are involved when I play with slime. You should know there is an entire community of “Adult Slimers” out there whether you get your slime from Sloomoo or Etsy, the makers are getting creative with their slime.
Inspired by my setlist and slime, I started listening to my favorite songs and soon I was “slime dancing” – I was moving and dancing with slime. Once I got used to it, I realized that a ‘Slime Dancing” video would be a great way to share how slime and lupus get my moving and smiling. I found myself wanting to choreograph a “Slime Dance” but I am not a choreographer, so I asked and hired Montana Efaw to help find the right moves. She asked me what song I wanted to work with. I chose the Selena Gomez song “Like A Champion,” and now I am using music, movement and slime to make an impact.
Will you join me in learning about lupus and sharing Lupus Awareness this month? Simply follow the hashtag #LupusWithSlime on your favorite social media platform!