Race #3: April 11 - St Louis, MO or How Sun Exposure and Lupus Do Not Play Nicely Together

Steven's Cure Lupus shirt

My husband Steven’s first half marathon was Go! St. Louis yesterday. He’ll be the first to admit that he doesn’t have as much time to run as I do—he spends most of his time and working hard on his MBA. But he still managed to train for the last few months, squeezing in runs when he had free time. Derek, a friend of ours from out-of-town and an experience half-marathoner, and I were both excited and nervous for Steven. Up until yesterday, his longest run had only been 7 miles!

When training, Steven and I employed the Galloway method, which combines running and walking. Usually, we ran between 5 and 10 minutes, and then walked for a minute. Although I don’t use the Galloway method in most races, I had assumed we would be using it for Go! St. Louis. Steven surprised me by not wanting to walk except at the water stops, which I appreciated since I cannot run and drink at the same time. He was amazing—refusing to break stride even when his ankles were starting to hurt. He just had a look of concentration on his face, and pumped his arms with determination. He was beautiful! Words cannot express how proud I was when he crossed that finish line.

Steven with his bib number and finisher's medal

Our friend Derek amazed me, too. He reminds me of a description I once read about the ultra-marathoner Scott Jurek. There is a passage in Christopher McDougall’s _Born to Run_ in which he describes the obvious joy in and love for running that Scott Jurek has. Talking to Derek during the race, I could see that same sort of joy emanating from him. It was uplifting. When we were close to the finish line, and it was obvious that Derek had a lot of energy left, I tried to convince him to sprint ahead and make a good finish. He refused, stating that the three of us started together, and we’ll finish together.

Derek and Steven at home after the race

As we approached the finish line, I did not have the excess energy that Derek had, nor did I have my husband’s determination. I was getting weaker and weaker. Unlike the path for our training runs in Forest Park, the course of the race lacked trees and shade. By the time we reached the 8 mile marker, the morning sun was radiating off the roads in swirly waves of heat. Despite the copious amounts of sunscreen that I had applied, I could feel the effects of the sun. It was slowly beating my body into submission.

It is estimated that 60 to 75% of patients with SLE are photosensitive. Many of these patients develop rashes, and the oh-so-lovely butterfly rash that is often a symptom of this disease becomes more prominent. Other patients, like me, develop migraine-like symptoms and joint pain. In fact, as soon as we got into the car to head home from the race, I felt the headache coming on. But I had no medication with me to prevent it. Next, the nausea hit. Then my joints started to tighten as if someone had secured them with duct tape to immobilize them. I spent the next eighteen hours alternating between restless sleep and wakeful vomiting. Everything I ate to replenish my energy after the race wound up in the bucket beside my bed. Stiff joints and a cold sweat made it impossible to get comfortable. My husband was wonderful enough to let me have the bed to myself while he slept on the guest bed.

When I woke up feeling better this morning, I was left wondering what I could have done to prevented this bad reaction to the sun. Every lupus site that I’ve visited has the same advice—limiting sun exposure and wearing sunscreen. I wore a lot of sunscreen yesterday, along with a sun visor. But limiting sun exposure was impossible on such a treeless course. Even the buildings downtown and near SLU offered little in the way of shade. I’m left wondering if I should start wearing a breezy, white long-sleeved shirt on sunny days, or wear even more sunscreen.

My singlet, medal, and bib number