May is Lupus Awareness Month and I wanted to share another one of my beautiful warrior friends with y’all and let her tell you a little bit about her journey with Lupus. Please share this story with others to help us raise awareness of this cruel and mysterious disease. Help us find a cure!
Deliscia’s Lupus Story:
I was flying high, coming from a wonderful cruise in the Jamaica and Cayman islands. It was end of March, the first of April 2012 and something just wasn’t right. I had a fever that would not go away and urine that looked like apple juice. But I ignored the signs. I have always felt that I could treat myself; over the counter medications would do. I went to a clinic that is provided to county employees for a check-up and it was determined that I had a respiratory infection. The nurse practioner prescribed me a standard “Z-pack” or azithromycin. Everything spiraled out of control after that. I took the medication as prescribed and my symptoms did not improve. In fact, I had worsened. I was fatigued for the first time ever in my life. I was experiencing petechiae mostly on my upper body and even inside my mouth; at this point I was seriously worried. I decided to go back to the clinic for a follow up because I had already self-diagnosed myself with an allergic reaction. When I went, she gave me an order for blood work. Before I could even get home she was calling me. Probably the worse phone call I have ever received. “Sweetheart, you need to get to an emergency room right away.” I will never forget those words. It was April 11, 2012.
I spent two weeks in the hospital in the bone marrow wing. I was beyond confused. Sick, weak thinking I am going to die here. I was tested for everything; even received a false diagnosis of lymphoma. While that would have been scary to others, I was mildly relieved as strange as that sounds. More than anything I wanted to know what was wrong with me. I was sent home with appointment after appointment and cocktail mixtures of prescription drugs. Still no one can tell me what was wrong. Their best guess was some mysterious unknown virus that had attacked my blood cells, lungs, and liver.
Months pass and I get better in a traditional sense. So they decide to help me get off steroids. Big mistake! I was admitted right back in the hospital levels were so low; more transfusions, more extreme fatigue. An Italian doctor comes in to assist my team of doctors in the bone marrow unit. Smooth man with the best cologne I have ever smelled. He grabs my hand and said, “I’ve been looking over your chart for 2 hours young lady. You have lupus!” “Lupus?” I reply. My mind is racing. What the hell is lupus? This was August 29, 2012 my oldest niece’s birthday. I was diagnosed. The puzzle was solved and I can fight this. I will live.
One of my best friends introduced me to someone whom had lupus for a long time. A real jewel named Fanta Dickerson. I remember hugging her and getting an indescribable feeling. I will always be in debt to my best friend Ana. This meeting changed my life. Fanta’s spirit and her faith in God was something I did not have and I admired it. In fact I was angry with God and hadn’t fully accepted my condition. I thought what did I do so wrong to deserve this. Am I a bad person? But I knew that I had found a friend for life and we will forever be bonded through this disease.
Once I started to accept my condition I focused on how I can help. If it wasn’t for Ana, I would not have known anyone with lupus and had so many questions. I needed support and I knew that there were others like me who needed the same. So I researched and came up empty. There weren’t groups like cancer patients have here. So I keep inquiring. And the opportunity to facilitate a lupus group was presented to me. I knew my condition could be worse and I wanted to help others. But most importantly I wanted to be a part of something that many people do not experience. And that is to have a place to go to talk and share with people who know exactly what you are going through. Many people sympathize with you but no one truly understands what you are going through unless they are experiencing the same thing.
There are many people who are been on this journey with me. One of my best friends, Lenesha or Niecy as many people know her as, got the call from me about doing the groups. She would be like a backup in case I got sick. What I got instead was a partner and someone whom I have gotten even closer to. We lost touch for years after college but we reconnected and I know this was for a purpose. Her spirit, like Fanta’s was something I gravitated towards and I know I am forever grateful to her. She could have said no. But she jumped at the chance because that who she is; always eager to help others.
We started our group August 2013. Many facilities turned us down and we were discouraged. Out of the initial groups that started in Indianapolis, we were one of the last. In my heart now I know that was for a reason too. It has brought some amazing men and women to us with amazing stories of courage and strength. I am nothing without my support group and we get stronger and stronger each month. We are like a family with a unique bond that no one will understand. We are the true definition of support and I cannot thank them enough for coming together and sharing their lives with me.
My other best friend Joanna has been super supportive and wears her lupus bracelet every single day. She was even pissed when it broke. She is always strong that I can only recall seeing her cry once during our 20+ years of friendship. She always has encouraging words and when I wanted to give up, she wouldn’t let me.
I’ve mentioned Ana before. She was there from the beginning. I could see the fear in her eyes but she never flinched in front of me. She visited often, brought things to the hospital. Cleaned my home for me so I could focus on getting better after I was released from the hospital. I remember at the hospital they would say a prayer and say a scripture over the intercom certain hours of the day. We were sitting in the visiting area and they recited something powerful to me and it just shook my spirit. Without words, she comes over and hugs me and we just hold each other. One of the most comforting moments and something I will always cherish.
And lastly my other half Dell has and will always have my back. We have been off and on with a somewhat rocky relationship at times. But I know no matter what if I need him, he will be there. He comes to groups and though he may be a man of little words, his presence means a lot to me on this journey as we both continue to learn more and more about his horrible autoimmune disease.
So while this may be a snippet of my lupus story, their energy is what keeps me going. I know I am doing this for a reason. And that reason is to spread as much awareness as humanly possible and be a blessing to them as they have been a blessing to me!