diagnosed with Systemic Lupus Erythematosus at age 13, 1983. I am now 55 years old. I attended to two different colleges for music University of South Alabama and had a full scholarship for Delta State University Music performance Major /Music therapist degree.
My lupus history… My Lupus was very active during my teenage years, so much that I had to almost drop out of high school. I was a “gifted “ student so my parents looked into enrolling me in the public school system. There I could stay home and receive a home school education. My lupus started to stabilize and I was able to go back to my catholic high school. Taking extra classes, I was able to graduate on time with my classmates. I felt very blessed to do this. I sang at our high school graduation, and I also won my high school Talent show! I felt like singing was my gift that would take me anywhere and it actually did.
Lupus has managed to attack every single organ in my body, one exception, it hasn’t attacked my liver. It’s been brutal on my heart and my lungs. age 21 it attacked my heart so badly, they had to drop 3 grams of steroids in my body iv over three days. It was brutal!
I have noticed that my big flares where my lupus attacks my organs, every 6-8 years. These flares are bad, regardless of what I do, they still happen. It’s very discouraging, but I have learned that I have a God who is bigger than all of this, and in Him I have found comfort and peace.
23 I moved to Los Angeles for my singing career. I was under the care of Dr Daniel Wallace, celebrity and expert rheumatologist. he kept me very healthy. I only suffered a few hospitalizations mainly because of stress and not knowing when to stop working. I was young and wanted to party and go go go. Unfortunately, you can’t drink alcohol and go like there’s no tomorrow when you have lupus.
At 31 I had to have a hip surgery, because my hip broke. All those steroids finally took a toll.
Age 35 lupus attacked both my kidneys and my heart. My heart had something called Libman-Sacks Endocarditis, and I had stage 4 class 3 lupus nephritis. I had to have open heart surgery to replace my heart valve with a mechanical heart valve, ( but when I was having a this surgery they didn’t know what was wrong with me, it was exploratory heart surgery) I didn’t have a heart valve left my cardio thoracic surgeon told me. He said divine intervention was what was keeping me alive. I was amazed that a heart surgeon was saying that. (I had a blood clot in my heart as a complication, and had my mom not been visiting me, I would have died. My rheumatologist managed to convince my cardiologist to let him start my chemo treatment for my kidneys while I was still in the hospital. After years of treatment my kidneys are back to normal 100% function, and my Nephrologist calls me his model Kidney Patient!
Today I just want to educate people about Lupus and ARDS.
Age 45 The experience that changed my life forever. I had started flaring about two years earlier, and I was on Rituximab, and all my other Lupus meds, plus my meds for fibromyalgia and Sjogren’s, and RA. when we had gone out of town to celebrate my husband’s birthday. I became so sick, I had to go back to the hotel room, and go to sleep. We went home the next day and I went to my doctor. I remember feeling very uneasy about this. I just had this feeling something wasn’t right. And it wasn’t. My condition kept deteriorating despite the antibiotics and the steroids and the shots that they gave me. I told my husband, and I never say this, “Take me to the ER!I feel like I am dying!” He’s sick too now. And he’s coughing . His parents have us in the car, they take him to his doctor while I wait, in the car, in the rain. Meanwhile, I am running a fever, and getting worse. He comes out. They said he has Pneumonia. We are finally headed to the ER. I’m immediately admitted to the hospital, I have pneumonia. That night I coded. I knew that I was dying. My lungs had filled with so much fluid I couldn’t breathe. My pulmonologist, a doctor who has known me since I was 20 years old, talked with my husband and I about putting me on a ventilator. We decided yes. I was in a coma for 5 weeks. In ICU for 16 weeks, intubated 3 different times including tracheotomy, and I was on a ventilator for almost 5 months. I had this all happen because we are susceptible to ARDS Acute Respiratory Distress Syndrome.
I am still on continuous oxygen, and I am in end stage lung disease. I have now been diagnosed with the terminal disease Pulmonary fibrosis. I have been in a wheelchair since 2016. because of my lungs,and their inability to function properly. Every day I ask God to help me help others, and help me to be more understanding, to be a better version of myself, to be a better listener and a better friend . Today I just want to educate people about lupus and ARDS how did I NOT know about ARDS, something that changed my whole life forever?
I no longer have my powerhouse voice that people who heard me sing , used to say, you sound like Whitney Houston. I used to be angry about losing my lungs, and my ability to perform, and gain an income from my voice. God gave me a different voice. I found out that I cannot have a lung transplant because I would not survive the surgery, I place all my hope and trust in the Lord, since doing so I also found out that I am in end stage lung disease, but I also found out that my lupus was in remission! So God is good! Plus, my dear husband, with his wisdom, as my advocate, with everything I taught him, saved my voice by doing a tracheotomy Ladies and Gentleman who have any illness, please teach your other half how to advocate if you cannot speak for yourself! It’s so important!!!. So I can still sing, I just can’t sing loudly or hold notes for a long time. Life is different now, but it’s beautiful, and I am very grateful! 🙏🏼💜✝️