Out of the Darkness

It all started in 1974. My mother started getting very sick. We didn’t know what was wrong with her.

Pain and misdiagnosis

Pain had overcome her so badly that she couldn’t even talk. Sometimes she couldn’t walk. So we went to the hospital and they gave her a test. The testing result didn't help figure out what was wrong. So they misdiagnosed her with blood cancer. For two years, she suffered badly. It got worse in 1975, and then in May 1976 she died.

Answers while grieving

It was a tragedy for family. We lost a lot. She left six siblings behind. In the end of 1978, we received a letter from the doctor who took care of her, telling us about this new disease called lupus. The letter said that was what our mother had passed away from that and that they were very sorry. They’re working on something to sustain or care for this new disease.

"Something is wrong"

I was in a car accident in 2005. A very bad car accident. I fractured my whole left side, lost half of my face, broke both my hands. A year after the car accident, I was diagnosed with chronic arthritis. I got so much pain in my back that sometimes I couldn’t walk. My hands would hurt very bad, so I got treated for chronic arthritis. Then in 2024, I caught Covid. I was sick. I didn’t get a hospital ventilator, thank God, but I got so sick. After Covid, I started getting great pain. I couldn’t understand what was going on. I started experiencing swelling in my hands and my ankles. I was in so much pain I couldn’t understand. I kept telling my doctor. Something is wrong. Something is different. This pain is not the same. I also told him about my mother's death. I got tested for lupus and it always came up negative but my pain was very bad I couldn’t understand it.

Getting answers

My doctor didn’t listen to it and I demanded some testing in 2025. I was diagnosed with lupus. They told me that it was in my DNA. I was so scared, I cried day and night. I would walk down the street and tears would fall from my eyes because I remember with my mother went through and I was scared to death. I felt the same thing that she did. My hands hurt so bad. All I have to do is bend down and pick up something in my back will hurt so bad. This is why I named my story "out of the darkness" because it laid dormant for a long time.

Pain, pain and more pain

I am now 70 years old. Usually people get diagnosed with lupus late 30s or early 40s, like my mother did. But mine laid dormant until I had Covid and that’s what brought it out. For a whole year I suffered not knowing what was going on. The doctor's wouldn't listen, but I demanded some help. I demanded someone to do something to stop this overwhelming pain. So here I am, crying as I’m writing this, in so much pain. I don’t know what to do.

Trying to find a way forward

I’m changing my eating habits. I’m trying to exercise, but it’s hard because every time you do something it makes the pain come worse. You can’t walk too much, you can’t pick up anything heavy, you can’t stand too much or my ankle starts swelling and my leg starts hurting. I don’t know what to do. I’m taking medication now from a doctor that I had to go to in Atlanta Georgia because Columbus Georgia would not help me. I traveled 3 and a half hours away from home just to get help. I don’t mind because I will do anything to help me with this disease called lupus.

It came upon me all I ask is that I live long enough to see my children who are 21, 18 and 15 grow up and be able to take care of themselves. This is a disease that is killing me slowly because I know eventually I’ll die. Thank you for listening to my story out of the darkness.