I was diagnosed 7 years ago, and at that time, had never even heard of lupus. When I got diagnosed my mom and I had to research what it was. I was 23 and noticed that I was just not feeling well. I remember telling my parents repeatedly that I didn’t feel well. They believed I was simply very sad because my grandpa, who I was very close with, has just passed away. Or, they attributed it to missing my brother, who had just moved away to start college at IU.
I had been a three-sport athlete in high school and played volleyball in college and suddenly had no energy. My body hurt, and I started to just want to sleep all the time. I remember giving blood every Friday for two months while my family doctor was trying to find a diagnosis. I saw a hematologist, a neurologist, and then last resort, they sent me to a rheumatologist in Indianapolis.
On my first visit to the rheumatologist, he looked at me and essentially told me, “Well, you have lupus. Prepare yourself to not have children; we’re going to do some more bloodwork”. Twelve vials of blood later, I had to almost be carried to my car! My primary symptoms at that time were joint pain and fatigue.
I'd had Raynaud’s for years and the butterfly rash across my nose. I started to experience anxiety for the first time. I was somewhat depressed, and I had terrible trouble sleeping even though I was exhausted. The anxiety has been among the worst symptoms for me. I’ll have full panic attacks, crazy social anxiety, and stuttering that I've had to learn how to handle. The ‘lupus fog’ sometimes causes me to forget small things which has gotten me into trouble at work. I always carry a pad of post-it notes with me. I have a day-planner and I use the calendar feature in my phone.
When I have a flare, my temperature fluctuates greatly, going from freezing to burning up. I keep both a blanket and a fan at my desk at work. The first time I remember getting hives in the sun, I was sitting at a tractor pull and a little boy next to me said to his mother, “What's on that lady's legs?”, so I look around to see and my legs were covered with big red hives. I WAS “the lady.”
Lupus has caused problems with my kidneys; my left kidney functions at 67%, and I had a nephrectomy tube at one time to keep my kidney drained so it would heal. After having my daughter, I had a week-long flare where I could barely sit up. Most recently, I've developed pleurisy around my heart and lungs, which causes random chest pains and trouble breathing. As a single mom working full-time, I do my best to keep my stress down; we do a lot of Yoga and Pilates. I feel blessed that my symptoms have remained manageable, and that I am still able to have a full-time job, stay active and raise my little girl.