Six years ago, I woke up one morning with debilitating pain, one month later I was diagnosed with Lupus. Hardly seen with many people living with Lupus, as the average diagnose takes 6 years. I was devastated to hear I was going to live with chronic pain forever with a disease that has no cure. I was lost, deep in my head. Then I found that Lupus Foundation of America. They helped turn my thoughts around and they continued to support me when I was diagnosed with Pulmonary Fibrosis a few years later. I’m that severe case I’ve was told about.
Pulmonary Fibrosis also has no cure; it is a relentlessly progressive lung disease that commonly results in respiratory failure and death. As it turns out this isn’t the most horrible thing that could happen.
Last year at the age of 15, I had a seizure. I don’t remember any of it, but my mom and sister told me everything later. I was the healthiest kid growing up, we didn’t understand what caused this. I spent 2 weeks in the hospital with a 104 fever and a rash from head to toe, that wouldn’t go away or get better. I don’t remember the first couple days in the hospital actually, I don’t remember the doctors or all the tests I was told they did, from kidney biopsy, brain scans, lots of blood work and spinal tap. I was told I was hallucinating. It was all so scary.
When I finally came back I was so frighten, nothing looked right, I couldn’t make sense of anything. It was unclear what was going on around me and the lost memory was hard.
But the worst part of it all was when they diagnosed me with lupus I thought I was dying, like my life was over. I screamed “no please” because I know Lupus. My mother has Lupus. I know what it has done to her. I’ve seen her pain and bad days. I know she may die without a new lung. I was scared for my future. I need my mom with me to take care of me. I need her especially now. I need her with me to teach me how to fight this, to help me become a Lupus Warrior too. So I’m starting with sharing my story and I’m excited to walk with all the Lupus Warriors come October and advocate for lupus research and increased awareness.
So now, THIS is the worst thing I have to live with, that my daughter has it too. Some people fear monsters around them; we live in fear of the monster inside our body. I worry if research isn’t funded, I will not have a chance to live, to raise my four children, to see them grow. My life is important to them, it’s important to me. I want to live, I want to grow old. We need to find a cure so my daughter can also grow old.
I am taking ACTION!!! I am a support group leader and advocate so that I can help others not feel alone and raise awareness of this terrible disease.
Lupus Warriors Together!
We will continue to fight! we will be lupus warriors until a cure is found!