From the age of 16, I struggled to find answers for an illness that had every intention of destroying me. I saw doctors, specialists, and everything in between just to be dismissed. Pushed aside, while something was killing me. I could pay for all of my medical expenses if I had a quarter for every single time I heard, "Your labs look fine. There's nothing wrong. You're too young. Lose weight. Gain weight," among other things that were cruel. Some doctors felt that I had lupus, but due to the complexities of the disease, getting a diagnosis was impossible. All that I could think about was the infamous line on the TV show 'House' when he stated, "It's never lupus."
I was finally diagnosed with systemic lupus erythematosus in 2020 after 19 years of looking for answers. I will admit I stopped seeking help for many years and suffered through my health conditions that would land me in multiple ER visits. I did not advocate for myself in my younger years. I didn't use my voice to help myself. As I got older, I knew that was the only thing that would keep me alive for my children and my husband - the power of MY voice.
Ultimately, after many failed attempts with rheumatologists, I found a rheumatologist in Marietta, Dr. Kimberly Hendricks, whom I describe as a “Godsend.” A plan was developed, medication was increased, and a new medicine was prescribed in 2023. The beauty of having my life back looked promising.
My husband, Shay, is a good cook and a great support. He has learned to make dandelion jelly and salves, and I have learned to be an advocate. Together, we diligently speak about lupus as much as possible.
At a recent Ripley City Council meeting, my husband, myself, and my children presented a proclamation by Governor Jim Justice that was read by Mayor Carolyn Rader and approved by the council. After the meeting, two came to speak to me, saying, “You’ve opened my eyes.” Those words and having the opportunity to help others keep me moving forward, sharing the lessons from my battle and my message of “never give up.”
Dana’s Message of Hope:
One of the most challenging aspects of lupus is learning how to alter your daily life to manage an unpredictable disease. One day, you feel fine, but the next, it is a challenge to complete daily tasks. Lupus has affected my daily life, dealing with symptoms, medication side effects, and severe flare-ups. I take chemotherapy medication once a week and biologic medication once a week. On top of a plethora of pills to keep me alive and my organs functioning.
My children need me. My husband needs me. Our animal rescue farm needs me. I push myself beyond my limits, but that's a sacrifice worth paying for to show up for my kids. I don't miss their activities. Lupus will shut my body down eventually, but they know Momma will make it one way or another.
I have always been extremely independent and rarely asked for help. I had that mindset for so many years that it caused me to struggle to ask or accept help when I desperately needed it. I went through a deep depression when I had to face the fact that I would never go back to who I was “before” lupus.
It is easy to think about what lupus has taken away from me, but it’s powerful to reflect on my blessings. I obtained two undergraduate degrees and a master’s degree, and I was the first in my family to attend college. I have three beautiful, kind, loving children, and these are my most significant accomplishments. Lupus can’t take my victories away from me.
As devastating as it has been, I gained gratitude for the little things and am happy just to be alive. With limited energy, I became purposeful about how I spend my time, which is a gift. I also became intentional on who I give my time to. I refuse to divert my good days to anyone who disturbs my inner peace. My energy supply is extremely limited.
I wholeheartedly believe God gave me a new path – use my voice and transparency to help others see lupus and make it visible to increase understanding. It is my goal to advocate and teach about this devastating, debilitating disorder that can and will destroy you. If I am sick or we are late for different activities because my body is working against me, I get viewed negatively. I want to change that perspective many outsiders have. I am not lazy. My chronic illness is invisible. My body is killing me from the inside out.
One thing that gives me hope is the kindness I have experienced throughout my transparency. I have had so many people reach to thank me for being open. Some are going through the trials that I faced, or know someone who is. I am confident I would not have made it through this without such a strong network of love and support. My husband, Shay, has been my rock. His tremendous love for me knows no limits, and he goes above and beyond to make life easier.
Lupus is as hard on your loved ones as it is on yourself. Lupus can be isolating, and I’m glad to have people who lift me up, are patient with me, and remind me why I’m still here. Choose your tribe wisely. To get through this cruel disease, you have to have people on your side who want nothing but the best for you. Those people can see when your body is failing you, and they help cheer you on to keep pushing. You have to have someone to talk to.
You honestly never know the impact you can have on someone. Never limit your kindness. We’re not meant to exist in isolation, so lean on people you trust. I hope to give back by giving someone else hope that they can live a great life, especially when it seems impossible.
In a final note, I repeated the Bible verse Hebrews 11:1 to myself countless times from her teen years to now as I walked into every medical appointment.
“I have had to walk by faith through all of this,” she said. “Let go and let God.”
WE CAN MAKE LUPUS VISIBLE! PLEASE HELP ME REACH MY GOAL. MYSELF AND SO MANY OTHERS NEED LIFESAVING RESEARCH!
I am joining thousands of people across the country for the Walk to End Lupus Now®. I hope that you will join me either by lacing up your sneakers or by donating to my fundraising page.
You can make a difference by donating to help me reach my personal fundraising goal and support the Foundation's efforts to improve the quality of life for all people affected by lupus! A generous contribution of $25 or $55 can make a definite impact. What’s more, if your employer offers a Matching Gift Program to employees, you may be able to double your contribution with just a little bit of paperwork. Trust me, it’s worth the effort! Every single dollar counts.
Did you know?
Lupus is a mysterious and misunderstood autoimmune disease. It strikes without warning, affects each person differently, and has no known causes or cure.
Lupus symptoms can be severe and highly unpredictable and can damage any organ or tissue, from the skin or joints to the heart or kidneys.
While lupus can strike anyone at any time, 90% of people living with lupus are women. Women of color are at especially high risk.
Lupus is hard to diagnose, but the Lupus Foundation of America is working to make life easier and more comfortable for the estimated 1.5 million people living with lupus in the United States. Together, we can solve the cruel mystery of lupus. Thank you for your generosity!