April 19: in better spirits

To lift my spirits yesterday, I went for a 2 hour run. My husband joined me for the last hour, which was very sweet of him! Running is the ultimate stress reliever. As soon my feet hit the trail, I could feel the dark mood lifting.

I also did Jillian Michael's 30 Day Shred yesterday, which means my quads are very sore today! I haven't felt this sore in a very long time. It's kind of refreshing--it lets me know my muscles are really being worked. Hopefully, my husband will join me in another 30 Day Shred workout tonight.

I've decided to try to put an optimistic spin on yesterday. Because I missed the race, I didn't have to pay for gas to and from Kansas. As a result, I was able to use that gas money today to register for the Bridge the Gap to Health race in Quincy, Illinois. And I'm so excited about this race because Jackie Joyner-Kersee will be there! She's been my hero since I was a little girl! I had her picture in my locker in high school, and on my bulletin board in college! I might actually get to meet someone who inspired me to run in the first place! Exciting!

But I still have to find a make-up race for Kansas. This is easier said than done. I might have to wait and cross Kansas off my list next year. It's a good thing I've allowed myself 5 years to complete this goal!

April 18: The race that didn't happen

I am incredibly discouraged. For the first time since I started this goal, I feel like it’s unreachable. That’s because I missed today’s race in Kansas. After a long search for an inexpensive race close to the Missouri border, I failed to make it to the race I so carefully selected. I set three alarms, but still managed to sleep through all of them. I woke up four hours after I needed to leave for Kansas.

As a result, I feel hopeless and angry. I’m angry at myself for not waking up. I’m angry at my body for being so weak. I’m unfairly angry at my husband for waking me up at 10:00 p.m.—when I was sound asleep—to talk to me. I’m angry that it took so long for me to fall back asleep after that. I’m angry that my husband heard my alarms, but didn’t make sure I was getting up. (Yes, I know I’m a grown-up and this isn’t his responsibility. But anger isn’t always rational.) Basically, I’m just angry.

Today, I feel like a failure—not a good feeling to have. I was on such a high from completing three states in a row. But that high has been sucked out of me--leaving a tired, hopeless shell of a human being. Now, I have to restart the search for an ideal Kansas race, and I have to get in a good workout to replace the 13.1 miles from today’s race.

But first, I think I need to find something to do to raise my spirits.

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

April 10: The day before Go! St. Louis

This weekend, our friend Derek drove up from Tulsa to join us in the Go! St Louis half-marathon. He arrived late Friday night, so I didn’t get to see much of him that night. I had to go to bed early since I was a start-line monitor for the Read, Right, and Run Marathon in Forest Park on Saturday morning.

The Read, Right, and Run Marathon seeks to “develop reading proficient, physically fit and community minded children by challenging them to READ 26 books, RIGHT the community with 26 good deeds, and RUN 26.2 miles over a six-month period.” (www.gostlouis.org/rrrm.html) The Read, Right, and Run Marathon is an exciting event for kids—they were bustling with energy on Saturday morning, eager to race their last 1.2 miles. As a start-line monitor, I was one of eight volunteers charged with the duty of staggering their starts—we didn’t want all of the kids starting at the same time. With hundreds of young students participating, that could have been a HUGE mess. We stressed to the children that this was a run, not a race--that everyone who completed their 26 books, 26 deeds, and their 26.2 miles gets a medal. Even so, most of the kids sprinted as fast as their little legs would carry them. On kid lost his shoe about 40 meters from the start line, picked it up, and kept running—carrying his shoe the whole way! With the growing rate of childhood obesity, it was wonderful to see the kids so excited about physical fitness.

After I walked back home from the park, Derek, Steven, and I went to the Go! St. Louis expo to pick up our race packets, our shirts, and our commemorative duffel bags. This was my husband’s first 1/2 marathon, and his first expo experience. I think he enjoyed the free samples from various food companies (LaraBars, Cascadian Farms, etc.), and it was handy being able to pick up several packages of Shot Bloks for the race. I love the energy of the expos and had a lot of fun exploring the different booths and vendors. I was really pumped about my free Cardinals ticket voucher that I received for dropping off an old pair of running shoes at the Goodwill booth. After spending about 30 minutes at the expo, we left to run errands and go home—taking it pretty easy since the race was the next day.

Race #2: April 3 - Bloomington, IN

When making Easter plans, I felt a little conflicted. On one hand, I wanted to spend Easter Sunday with my husband since it was our first Easter as a married couple. On the other hand, I wanted to see my grandparents in Cincinnati and spend Easter with them. Since my husband was too busy with school to drive to Cincinnati, I decided to drive to my grandparents’ Thursday evening, and spend Friday with them. From their house, I would have to drive three hours to Bloomington on Saturday morning to run the IU mini marathon. Then, after the race, I would drive four hours home to St Louis and spend the rest of the weekend with my husband.

I spent Thursday morning and afternoon cleaning and packing. I had to make sure I had running clothes for every type of weather since the reports for Bloomington called for a warm, sunny morning with a cold rain coming through late morning on Saturday. I went through my suitcase twice to make sure I packed everything. Shoes? Yes. Singlet? Yes. Shorts? Yes. Powersox? Yes. Bandaids? Yes.

After straightening up the house, packing my car, and leaving a note for my husband, I left St. Louis and headed for Cincinnati. It was dark and late when I arrived, so I really didn’t spend much time with my grandparents that day. But I spent most of Friday with them, and ate dinner with them at my Aunt’s restaurant. Grandma told me I had to order a complete dinner and eat it. But everything on the menu is artery-clogging, deep-fat-fried, good ol’ country cooking. I hesitantly ordered and ate chicken strips, fries, and macaroni and cheese. I was really nervous about eating something so heavy the night before a race. I didn’t want to spend the next morning in the race port-o-lets. Gross. But I always do what my Grandma says. We all do. For a woman who isn’t even 5 feet tall, she’s definitely intimidating!

After dinner, I got ready for bed. I was in bed by 7:00 p.m., which surprised my Grandma. With her Japanese-coated English, she asked, “Whaa? You go to sleep now? What time you leave?” When I told her I had to leave by 3:30 a.m. to pick up my registration packet and bib, she laughed. “You like airplane. You just touchdown and takeoff.” This made me feel a little guilty about going to bed, but I knew I needed the rest.

At 3:30 a.m at my grandparents' house

At 3:15 a.m., my cell phone alarm buzzed. I stumbled to the bathroom and completed my pre-race routine. I stuck bandaids to and rubbed Bodyglide on areas prone to chaffing. I dressed, ate a bowl of cheerios, and snuck out of my grandparents’ house—trying my best not to wake them. Then I drove, and drove, and drove to Bloomington. Until 6:00 a.m., I seemed to be the only person up and driving the curvy hills through Indiana.

I made it to the campus of IU by 6:55 a.m.—more than enough time to check-in, get my bib number and timing chip, and eat a small snack. I ate two granola bars, drank some Gatorade, and walked around the indoor track to kill time. At about 7:50 a.m., everyone headed towards the start line, and I followed the crowd. About 760 runners lined up behind the start and waited silently until the announcer yelled “Go!” into the megaphone. And we took off. It was warm and sunny—I was feeling good.

I was going faster than I had planned. I just couldn’t get my pace right until about mile 5. By then, I didn’t need to try to slow down—it happened naturally when the ice-cold rain came in and hovered over the race. Drenched and shivering, I tried to speed up, but couldn’t. I was frozen, and my movement reflected this. With each step, my legs felt like heavy ice that I struggled to move—especially up the numerous hills on the course. But somehow, I made it to the finish line. And when I finished, I felt like I had energy to spare. I finished in 2:06:48—faster than my Bowling Green time. As unlikely as it felt, I ended up with a new PLPR!

Warm and mostly dry after changing in my car

After the race, I grabbed two granola bars, a bottle of water, an everything bagel with cream cheese, and a banana from the refueling tent. I wanted to make sure I ate enough—I didn’t want to end up with a headache as I drove. I carried this grub back to my car, where I changed into dry clothes. I was so uncomfortably cold and wet, that I gave up on modesty. Drier and warmer, I headed back to St. Louis to spend the rest of Easter weekend with my wonderful husband!

Wet clothes, wet gear, my bib, and my medal

Race #1: March 27 - Bowling Green, KY

Sporting my "Cure Lupus" singlet post-race

When I first registered for the Total Fitness Connection’s Mini Marathon in Bowling Green, I asked my husband to drive to Kentucky with me so I could show him my alma mater (Go Hilltoppers!). I thought we would drive down on Friday, March 26, spend the night at our friends’ place, and drive back to St. Louis late Saturday or early Sunday. But a couple of weeks ago, one of my husband’s friends invited him, along with a bunch of other guys, to his family farm for a “man trip”—complete with firearms—on March 26. He told me he didn’t have to go—that he would come to Kentucky instead. But I could see how much he really wanted to go to the farm. Therefore, we compromised.

My husband went to the farm on Friday for several hours, and returned home by midnight. I went to bed very early (thank you, Benedryl), and woke up at 1:30 a.m. We packed the car, and were on the road by 2:00 a.m. I drove since I was wide awake with nervous anticipation and a little bit of fear about the race. My husband claimed to be awake and offered to drive, but within 10 minutes of leaving the city, he was snoring loudly in the passenger seat. The roads were pitch black, and the stars were hiding behind trees and clouds. I listened to an audiobook to keep my mind off of the quickly approaching race, and drove the 290 miles to Bowling Green.

We arrived in Bowling Green a few minutes ahead of schedule, and I had plenty of time to pick up my bib number and race packet. My husband and I relaxed in the car, eating the Kashi bars that I had packed. I coated my body with sunscreen, debated whether or not to change into my running tights (I ultimately decided to wear shorts), and filled my fuel belt. My husband and I then started towards the start line, stopping first to wait 15 minutes in line for the port-o-let. At the start line, I turned on my iPod and focused on the audiobook until we started.

My bib number

I didn’t have a set pace goal for the race. Truthfully, I doubted whether I could even finish the whole race without walking a large portion of it. So, I just set my watch and ran. I didn’t pay attention to my time until I passed the three mile marker. At that water stop, I glanced down at my watch. 28:54. I did a double-take. I was running at a sub-10 pace. When I was younger, I would have been horrified at the thought of running so slow. Being older, weaker, and sicker than I was then, I was thrilled at the idea of running a sub-10 pace in a half marathon. Part of me was worried that I had gone out too fast and was going to really hit the wall. But I hushed that negative, worrisome voice and continued running.

When I called my husband at mile 12 to have him meet me at the finish line, he was shocked. “You’re doing great, sweetie! Much faster than you thought.”

I had to agree with him. I was doing great. I hadn’t hit the wall. I was happily chatting with another runner. I was feeling great and having a wonderful time.

Chatting with another runner--she was an awesome motivator!

When I reached mile 13, my husband was there to greet me—snapping photos as I ran by. I crossed the finish line at 2:10:39. It was barely a sub-10 time, but I was still proud. It was a PLPR (post-lupus personal record). And I only walked through the water stops (I have never mastered drinking while running). I just kept running!

The finish line!

Back of the singlet

April 4: Update

I haven’t updated this in quite a long time. This isn’t because I was being lazy, or forgot about this blog. Honestly, I felt like it was becoming too negative. I know my purpose when I started documenting my struggle with lupus was to be blatantly honest about how I was doing and feeling. But when I was flaring up, my posts all sounded like complaints. So I decided to take a brief break—I decided to resume updating this blog when I successfully completed at least one half-marathon while wearing my “Cure Lupus” shirt. I have successfully completed two half-marathons in the past nine days! Yay!

But let me backtrack a little. In February, I was exhausted and in a lot of pain. My joints felt heavy and stiff—like they were filled with cement. It hurt to move. It hurt to lay still. It hurt to leave my warm mattress pad and covers. Most of all, it hurt to go out into the cold. I became a bit reclusive, resting on our bed whenever I had the chance. Because of my uncomfortable joints, running and cooking—things I truly love—were no longer enjoyable. They turned into chores. I still ran, but I did not keep the running schedule that I had planned. I put in less miles per week than I wanted, and my longest run was only ten miles.

Towards the end of February, I flew to Texas to see my rheumatologist (whom I absolutely adore). After reviewing my labs, inspecting my joints, and performing a thorough physical exam, he decided to prescribe a different medication. He prescribed Imuran, a somewhat harsh immunosuppressant. He told me that I should notice a difference within 60 days.

Just having a different medication filled me with hope. Having lupus can be emotionally exhausting. I feel like I’m missing out on so much—like I’m sleeping my life away. So having a new-to-me medication—one that could possibly end this flare-up—is exciting. I’ve been on the Imuran a little over a month, and I can honestly say that I feel much better than I did in February. I’m still not back to normal. I still feel exhausted and my joints don’t always want to cooperate, but I am getting better. I do not have the energy to do all that I want to in a day. But if I plan my day right, I have enough energy to get some chores and work done and still go for a run. I know that having the energy to go for a run might not seem that important to some people, but it’s so important to me. I’m filled with hope and optimism on days that I run, but days that I physically can’t run seem so dark and bleak. Running makes me feel human—makes me feel normal. When I run by other people in the park, I feel like I’m just as strong and just as healthy as they are.