I remember as a kid, laughing at that White Rabbit that Alice follows into Wonderland. I thought he was so silly – always in a rush, panicked about running behind or running out of time.
Now? That’s my life.
Lupus nephritis (LN) put itself into the middle of my life on the first Valentine’s Day of my new marriage.
The evening ended with me in an emergency room, racked with joint pain that no one could explain. It took months of visits with specialists to learn that I had SLE and LN. LN is an advanced inflammation of the kidneys that represents a serious progression of Lupus. In LN, the kidneys cannot properly filter waste from the blood and control the amount of fluids in the body.
SLE with lupus nephritis is like a destructive gale. You can’t see it, you only see the damage it causes. The unpredictable fatigue. Muscle aches. Physical changes caused by the treatments. Dietary restrictions. Because my kidneys eventually failed, I require nine hours of peritoneal dialysis every single night. The disease impacts every decision I make. I’ve had to learn new ways to care for myself. I’ve always been a fighter, and I knew I could rise to the challenge. Seeing my husband do the same, embracing the adjustments that make our life together work – it makes me sure we belong together. Even as we are living a different life than we imagined when we said “I do.”
We want to start a family; LN and subsequent kidney failure put that on hold. Instead of baby registries, I had to review transplant registries. I’m waiting for a kidney and we are looking into options for how we can eventually start a family.
We’ve always loved to travel, but LN comes with us everywhere. We must bring and use dialysis equipment.
I adjusted my career. I loved being a news reporter, but the pace just wasn’t a good fit for living with SLE and dialysis. Instead, I work as a copywriter, where I can still tell interesting stories, and I have the flexibility to deal with my disease when needed. I’m happy that I still make my living as a writer. But I’ve had to accept a different definition of success.
Managing SLE and dialysis takes up so much time, I feel like we are always falling behind. Every day I wake up, assess how I feel, and then decide how much I can realistically do that day. It’s usually not everything I want to do. On the good days, when I wake up with energy, I feel unstoppable. I get so excited to rush into the day and accomplish all I can. Those are the days my husband reminds me not to push too hard, tries to protect me from making the next day a bad one. As Alice’s White Rabbit says, “The hurrier I go, the behinder I get.” Still, I hate the idea of missing a chance to get caught up on the things we want out of life.
Although making my family and my career work while managing my SLE and dialysis isn’t easy, knowing I can do it is empowering. That is one reason I’ve become involved with local advocacy organizations. Doctors can teach other people how to take care of their bodies. I’m proud to be able to teach them how to speak up for themselves, how to find their power and not feel defeated.
That rabbit has another quote that speaks to me. Alice asks him, “how long is forever?” He gives an answer that I appreciate more and more as I grow: “Sometimes, just one second.” It helps me to remember that even though my life may not be what I had planned – it is a wonderful life. For all the time I have to dedicate to managing SLE and its consequences, and for all that it feels like I will be doing so forever – nothing can change the fact that I can love.
For in the midst of all of it, my husband and I make the most of every second of forever.
Gabrielle is a patient advocate living with lupus nephritis who volunteered to share her story on behalf of Aurinia Pharmaceuticals. For more information about lupus nephritis, visit www.ALLinforLN.com.
Getty photo by oneinchpunch
Gabrielle Davis is a former news journalist, turned lupus/patient advocate who uses her candid experiences of living with lupus, chronic illness and an invisible disease to spread awareness, particularly among underserved populations and those who make decisions that directly impact underserved populations. Diagnosed in 2009 as a 26-year-old newlywed, Gabrielle began her social media presence under Lupus Sistas, to connect, educate and support the lupus community. Since then she works to provide lupus education and awareness in her local community, legislatively and for the medical community. Her advocacy work and awareness includes: Feature by the US Department and Health and Human Services’ Office on Women’s Health to highlight Lupus. Board Member – Lupus Foundation of Florida WEGO Health Patient Expert 2016 WEGO Health Activist Hero Nominee 2017 Lupus Research Alliance Patient Advocate for Annual Advocacy and Hill Day in Washington D.C. Featured in a lupus awareness segment for Lifetime Television’s show “The Balancing Act” November 2017 Education Session on Lupus for 2017 Black Nurses Rock Annual National Convention in Orlando, Fla.
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