My Journey With SLE Lupus
Last updated: August 2023
I was diagnosed with SLE lupus and rheumatoid arthritis when I was about 28. Before lupus, I was very energetic, upbeat and always full of life. I had 4 children I had to raise on my own. I would be so so tired, drained of all energy. My body was in so much pain. I was afraid to find out what it was and hid it from my family.
At night after everyone went to bed, I would crawl up the stairs because I couldn’t walk up them. Finally, I went to a doctor who referred me to rheumatologist. Test after test, he came back and told me that I have SLE lupus with rheumatoid arthritis and that the arthritis had impacted 90 percent of my body. He did aggressive treatments for a whole year until he could get it under control. It was the late 90s, about 1998, so there wasn’t much that could be done.
My lupus went into remission after 1 year. Then, I found out that with 1 autoimmune disease can come others. I was diagnosed with fibromyalgia and the doctors said the pain was all in my head. They tried to give me strong medications that were mind-altering medications. I refused to take them.
Finally, I found a doctor who could treat me properly. The fibromyalgia never goes into remission. I continued to work. In about 2005, still dealing with fibromyalgia and rheumatoid arthritis, I started feeling so, so tired and my body was hurting so bad. Every muscle and joints hurt.
Muscle weakness from lupus
One week, on my way to work, I got a cup of coffee. As I was walking, all of a sudden the cup just drops from my hand, and this kept happening for days. I was home one evening feeling so bad like never before. Very weak. Next morning, I woke up, got the kids up and out the door for school, all while feeling so bad. I felt myself moving in slow motion. On my way to work, I don’t know how I made it there. Soon as I got to work, I was struggling to walk and talk. My supervisor caught it right away. They rushed me to the hospital.
When my husband got to the hospital, I couldn’t really say anything. I thought it was a stroke. Afterwords, through all of the tests, their doctors said it was not a stroke. Yet, I couldn’t walk, talk, my pain level was so high my whole body was red. I went home.
The next day, some speech came back, but I had to go to pain management to help me to walk again. My doctor said my body shut down because of the pain. I got a second opinion and found out that they both were wrong. The lupus had come back and affected most of my vital organs except my lungs. I decided to keep fighting. I was about 28 at that time. I turned 59 in April, so all the stereotypes or talk about 5-year clock is no more.
Life with lupus and more
I still deal with SLE lupus, mixed connective tissue disease, rheumatoid arthritis, plus other issues, but I’m a lupus warrior and I will fight until my last breath. I’m praying my story will help encourage someone else who may have only been recently diagnosed. Don’t give up, continue to pray and move forward. You have a village that is bigger than you realize. I connected with several lupus support groups. Thank you for letting me tell my story.💜💜
How are you most likely to respond when someone offers you unsolicited advice about your lupus?