Background/Purpose: A diagnosis in my teens of epilepsy resulted in shifting my dreams of being a teacher, but after successful brain surgery I began living what was a normal life. But medical issues continued to come and go. I went to the hospital several times and no one could figure out what was wrong. In fact, some did more harm than good. A cardiac catherization led to emergency surgery. Then my husband and I decided to find an answer, no matter what. After visiting many specialists, we found a rheumatologist who listened. I was tested for leukemia, MS, and others, but not lupus. Meanwhile, I was swollen and sore all the time with severe fatigue and weakness throughout my body. Finally, I asked the rheumatologist to test for lupus. He still didn’t think it was lupus, but after more tests I was diagnosed. Listening to my body and my own instincts led to a diagnosis!

Treatment: After being diagnosed with SLE and other autoimmune diseases my rheumatologist started me on several medications and a couple worked.  I began swimming and playing volleyball to keep moving.  Then I moved and the first doctor I met pushed chemo, even though I was in remission. That was the last day I saw this doctor. I contacted a patient advocacy group that pointed me to a new rheumatologist who listened to me and suggested keeping the status quo. After a year, she started to wean me off some of the medications. I learned you can find the right doctor by searching and speaking up.

Maintenance: As my rheumatologist decreased some medications, my neurologist increased some vitamins and minerals. Their working together and sharing information is key to my mental and physical health. I have learned to deal with three main issues:

• Sensitivity to sunlight
• Burning of my face
• Body aches

These all got more severe since my lupus diagnosis and I took on a new perspective of life through this challenge.

Quality of Life: I have learned that in order to succeed through my day, I must listen closely to my body. For instance, despite loving the sun, I now avoid it as much as possible. I have learned to always wear a hat, sunglasses and use a lot of sunblock with high UV protection.  Often, I just stay inside. When I feel my face burning, I don’t go out. A cool, wet washcloth on my cheeks and eyes helps the symptoms subside. The key is to feel it coming on. If I catch it early, I can usually continue my day without much impact. If I’m out, I find a cool, dark place to minimize the flare. Part of my daily life is dealing with different aches – fingers swelling, joints aching, body fatigue. Every day is different, and when I push myself, I pay for it the next day. I now know that when my body tells me to slow down, I must listen. I don’t like to stop, or even slow down, but I know that in order to live with lupus I have no choice. Swimming is one way I have adapted to this new normal. The water helps support my body and relaxes the pain. Walking our dogs is another way to exercise but not put too much stress on my body. Every day I listen carefully to what my body is telling me. What can I do today, what should I do differently? Think back to yesterday…what did I do, and how is it affecting me today? Understanding my body has been one of the most beneficial things in my fight with lupus.

« Back to 2019 ACR/ARP Annual Meeting

ACR Meeting Abstracts - https://acrabstracts.org/abstract/coming-to-terms-with-lupus-how-learning-to-listen-to-my-body-and-letting-it-tell-me-what-to-do-improved-my-quality-of-life/