Race 7: October 17 - Denver, CO

Saturday, October 16, Steven and I woke up before dawn to head to the airport for our flight. We parked, and took the shuttle to the terminal. Surprisingly, we made it to our gate with plenty of time since I refused the full body scan and received a very lengthy and intimate pat down. After sleeping on our flight, we landed in Denver feeling a bit discombobulated. We picked up our rental car, and drove to a small coffee shop downtown for, breakfast, tea (for me) and coffee (for Steven).

After refueling, we went to the race expo to check in and get our race packets and bibs. The expo was a nice size, and we ended up with a lot of freebies. I had fun sampling gels, drinks, and other snacks. (Luckily, I don’t have stomach problems in races!) Steven managed to score two free technical shirts. Gotta love the freebies!

I had to write on the inspiration board at the expo.

Outside the expo

At the expo -- Steven's super fast time!

At the expo -- sporting the Elvis mask

Since UT was playing, as soon as we left the expo went over to the bar at the Hard Rock Café to watch the game. While we were there, six very intoxicated, middle-aged UT fans came in to watch the game, too. And somehow they convinced Steven to do a few shots with him, despite the fact that he had to run 13.1 miles the following day. I wisely stuck with water.

Steven with his fellow UT fans

They kept buying Steven shots to celebrate the game

At the Hard Rock bar

When the game was over, we checked into our hotel and rested before going to dinner at the Cheeky Monk Belgium Beer Café. I had a salad and a three cheese mac ‘n cheese dish. The mac n’ cheese was a little heavy, but I don’t get sick to my stomach when I run. In fact, I feel nauseous if I don’t eat before I run.

At the Cheeky Monk

Unfortunately, the service was really slow, so our meal took over 1.5 hours. We got back to our hotel pretty late, which meant we didn’t sleep as long as I wanted. Morning came a bit too early. But we groggily got up, ate, and walked the mile from our hotel to the race start.

The busy start line

For an inaugural race, it was a lot more crowded with participants than I expected. Steven and I squeezed into our corral and waited to start. Even after the race started, it took over 20 minutes for our corral to reach the start line. With 16,000 runners, it takes a while to start!

Yay! Texans!

One of the bands on the course

We ran a nice pace—slower than I’m used to. Steven is in great shape, but he excels at shorter distances. He can kick my rear in a 5k race. But I have a faster half marathon time than he does. So it was a nice steady race for me—no pain, and plenty of opportunities to take photos.

Steven running

My soul-mate

There weren't many supporters on the course, but these women rocked! They were at every turn!

I have mixed feelings about the race. The course was well designed. Running through the park was lovely, and running downhill to the finish was really nice. But the crowd support was poor for such a large race. And being a Rock ‘N Roll marathon and half, I expected more bands. I was surprised by the long stretches of silence. I was even more surprised that there was no sunscreen at the medical aid tents. We were running at altitude—sunscreen is a must. Even though I liberally applied sunscreen before the race, there was a point where I wanted to reapply because it was sunnier than I expected. So many larger races have sunscreen available. It was a bit ridiculous that this race did not. I think that for the second year of the race, the race directors have a few things to improve. But overall it was a very pleasant race. And I having Steven run it with me made it even better!

Steven finishing the race

Fall health update

I haven’t been updating, but luckily it’s not because my lupus is getting the best of me. It’s because I’ve been busy writing, studying, and trying to stay on top of daily tasks. I still have to sleep more than the average person, and sometimes feel weak and tired. But with the Plaquenil and Imuran, I am so much better than I was. The joint pain is still there, but I’m now used to it and it doesn’t get in my way.

Race 6: June 6—Ann Arbor, MI

With wedding planning--and now a huge pile of thank you notes to write--I haven’t updated this as often as I would like. But with my first race of the fall season tomorrow, I decided I needed to post about my last race.

The Illinois Capitol Building

On June 4, my husband, our dog, and I packed up our car and started the 8 hour drive from St. Louis to Ann Arbor. We took our time driving there because we wanted to stop in Springfield, IL to visit the capitol. We were being tourists for the weekend!

Our trunk was full of camping gear—we were going to stop in Indiana and spend the night in our tent. But we both got too tired before we made it to the state park where we had planned to camp. So it was the iPhone and hotwire.com to the rescue! We found an inexpensive room and stopped for the night.

The next morning, we got up and drove to Michigan. We decided to take a slight detour –we went to Lansing to see Michigan’s capitol. It was pretty, but not nearly as impressive as Illinois’s. We made it to Ann Arbor to the Dexter-Ann Arbor Half Marathon expo with an hour to spare! My husband walked the dog around a grassy field while I went and picked up my runner’s packet. We then had plenty of time to explore Ann Arbor.

The Michigan Capitol Building

Downtown Ann Arbor has several food options with outdoor seating, so we decided to have dinner outside at a Japanese-French fusion café. The food was very interesting and delicious. While sitting and eating, numerous people stopped and asked us about our dog. She had just been to the groomer for a haircut, and so many people told us she looked like a young black fox! She received so much attention that weekend!

Part of our dinner at the Japanese-French cafe

After eating dinner, then dessert (ice cream and cupcakes!), we wandered around downtown and attended an African American Heritage Festival. Again, the dog received a lot of attention—and a hot dog! She was in doggie heaven!

Samoa cupcake

Toasted coconut ice cream

African American Heritage Festival

After a couple of hours, it started to rain, so we decided to go drive to our campsite and set up our tent for the night. When we arrived at the campsite, the park ranger informed us that there was a tornado headed in our direction. She suggested that we find a hotel instead of camping. By this time, the rain was pouring and the campgrounds were all soaked. We agreed that a hotel would be a better option. Once again, the iPhone and hotwire.com rescued us. We found an inexpensive, pet-friendly hotel room, and crashed for the night.

I didn’t sleep well because our darling dog is terrified of storms. She wanted to be as close to me as possible, and her trembling kept me awake. But I did manage to get a few hours rest before I needed to be in Dexter.

Looking tired in our hotel on race morning

On race morning, my husband drove me to the township of Dexter and dropped me off. (He then went back to the hotel to sleep some more!) Shortly after I arrived at the starting line, the race officials announced that the tornado uprooted a tree, and the tree was now blocking the course. We had to wait an extra 30 minutes before starting. This threw a lot of people off because they had already consumed their pre-run energy drinks and bars.

Once the tree was cleared, we all took off. The course was beautiful. We ran alongside a river, which was bursting with water from the storms. The scenery was lush and green—very serene. The only negative about the course was the actual road that we ran on. We ran from Dexter to downtown Ann Arbor, and the road was filled with potholes. I tripped several times, and saw others stumbling in the holes as well. But, overall, this was a lovely course with a surprising number of race supporters.

The sign for the race near the finish line in downtown Ann Arbor

The race ended in downtown Ann Arbor, where the Taste of Ann Arbor Festival was being held. I met my husband near the recovery tents (I had called him when I reached mile 10 to make sure he was awake). After a long run, I went and enjoyed some Indian food at one of the festival tents. Yum!

My medal and race number

Enjoying the Taste of Ann Arbor

Brief update

So, I haven't updated this page in a while. Not for lack of running or because I was too sick to write. But I haven't added to this page because I was too busy getting ready for my wedding. Even though my husband and I have been legally married over a year (we got married at the Justice of the Peace in Richardson, TX), we had planned to have a more traditional ceremony and reception this year. On August 14, 2010, we got married...again. It was a beautiful and fun ceremony. But planning the wedding and making the decorations, bouquets, cupcakes, save-the-date booklets, invitations, and other odds and ends proved to be very time consuming.

Now that the wedding is over, I still have to write thank you notes and find a home for all the wonderful gifts that we received. But now I at least have time to write.

As far as my health is concerned, the Imuran seems to be working well. The only problem is that it does it's job very well--it really suppresses my immune system. This keeps my immune system from attacking my body, but it also keeps my immune system from attacking invading pathogens. This means that anytime I'm around someone sick, I have to be extra careful. And when I was recently around my adorable niece and nephew, I caught a 72 hour stomach bug and a 2 week cold. But it was worth it to play with them!

My most recent half marathon was on June 6 in Ann Arbor, MI. Most places are not race heavy during the summer--the summer is a time for light training. But now that it's cooling off a bit, the fall race season is starting. So far, I'm registered for two races this fall: Denver and Tulsa. I need 2 more to reach my goal of 10 this year (50 races in 5 years equals 10 a year). I think I will be running one in Iowa and possibly one in Arkansas. I'm researching races tonight!

Prednisone side effects

Recently, I had to take two rounds of medrol dose packs. Although I took these for allergies and not for lupus, the side effects are still the same. Since I am often on prednisone for my lupus, I felt I should share the side effects of this medication.

First, it can affect the bones. I have to take calcium supplements when I take prednisone. I also drink a glass of milk when I take the prednisone.

Second, it makes me very irrational and emotional. I feel so sorry for my poor husband who has to deal with my prednisone temper. I know it’s not fun for him.

Third, I become ravenous on the medication. I will eat anything and everything. I’ll even eat things that I normally do not touch—like heavily processed beef or pork products. With these two recent rounds of steroids, I gained 15 lbs and felt really puffy and bloated. I hate sharing unflattering photos, but I think some people don’t fully understand what lupus patients go through. We’re sick without the medications, but the medications have side effects that make us miserable and sick as well. When we are having a flare, it is a lose-lose situation.

I've gained a lot around my arms. Too bad it's not muscle :)

The prednisone has helped me gain around my midsection, my arms, and under my arms. It's not flattering--I look a little pregnant when I'm not. But in a few weeks I should be back to my normal size. After all, I have a beautiful, fitted wedding dress to fit into :)

A slight Buddha belly!

Update to June 4th

Late in the evening on May 27, my husband and I packed up my car and drove down to Fort Worth, TX to make preparations for our “real” wedding. My husband had worked all day and was exhausted, so I drove for 550 miles straight while he slept. When he took over and drove the remaining 120 miles, I was too wired to sleep. I didn’t fall asleep until an hour after we arrived at his mother’s house. And even then, I only slept 4 hours. I was exhausted, and my sleep cycle was completely thrown off. A good sleep schedule is so important--especially for those with chronic illnesses like lupus. Each time I sat down, I fell asleep. This means that I missed out on a lot of time with family. Steven and his younger sister played Wii games, I slept. I slept while she beat him a bumper pool. I just kept dozing off.

Somehow, I managed to make it through the weekend—through catering appointments and visits with friends. Then, on Monday, I drove Steven to the airport so he could return to Missouri in time for work on Tuesday. I then drove, with the dog, to the Houston area to see my parents. At my parents, I worked on several wedding crafts and finished many projects. I have now punched out all of the guest favor boxes. The pearl wreath for the front door is done—and I have the hot glue burn marks to prove it! The ribbon streamers for the send off are started. Despite still feeling off my sleep schedule, I got a lot done before leaving on Thursday morning.

The dog and I had to leave early Thursday morning to drive back to Missouri. I needed to get back fairly early on Friday to pack for the Dexter to Ann Arbor 1/2 marathon. We hit the road on Thursday, playing tourist so we could stretch our legs and walk every hour or so. After a lot of driving and about an hour of sleep at a rest stop, Lady and I made it back to St Louis at about 7:00 a.m. on Friday. This was more than enough time to nap and pack for the Ann Arbor trip.

Steroids

Well, I'm back on Prednisone. I'm actually on it for my allergies (my husband and I went on a long hike, and the allergens jumped at the chance to attack), but I'm slightly relieved because my joints have been aching. Specifically, the joints in my hands and feet. They throb when I wake in the morning. They fill uncomfortably when I run--like the blood pumped to them is unable to return to my heart.

But Prednisone is not without it's many side effects. For starters, I get so irritable on it. Whenever I am on it, I joke about my "roid rage." I'm ashamed to admit that my horribly grumpy behavior has been hard on my husband. I was so uncontrolably angry yesterday--his birthday--and I fear that I may have made his birthday a bit unpleasant. I didn't mean to--I really just couldn't control myself at all. I feel awful about it, and he's been so understanding. But I find it horrifying how I behave when I'm on this medicine. I just go a bit mad. But it works. It works well.

It also works well for weight gain--another side effect that I hate. In the last 40 hours, I have gained 8 pounds. Most of this weight came from the birthday cupcakes that I just couldn't stop eating. I wasn't even hungry--Prednisone just gives me this uncontrollable urge to eat everything in the kitchen. I even ate foods that I hate and, under normal conditions, will not touch. I devoured some sort of mystery meat and a lot of salami. I couldn't stand either one, but I had to eat them. It's horrifying. And it really upsets my stomach. When I eat things that my stomach isn't used to (e.g., red meat), my stomach punishes me for it.

But Prednisone helps keep my eyes from swelling shut during allergy season, and it relieves a lot of my daily Lupus pain and inflammation. And sometimes, just sometimes, those pros outweigh the cons.

Race 5: May 8 -- Quincy, IL

On the morning of the race, my husband and I woke up at 4:00 a.m. I needed to pick up my packet by 6:55 a.m., and with the 2.5 hour drive, we needed to leave by 4:25 a.m. We quickly got ready, which included packing food and water for the dog since we were bringing her with us. We loaded the car with snacks and clean clothes for me to change into, and hit the road.

When we left, it was a little chilly, but not unbearable. And when I looked up the weather report for Quincy on Friday, the weather channel stated that it would be in the 50s and pleasant. And the weather channel was wrong. It was sunny and beautiful, but it was in the 40s with a fierce and biting wind. I was thankful that at the last minute I decided to bring my jacket.

The wind was rough on me during the race—it chilled me to the point of shivering. And since my joints don’t appreciate being chilled, they started throbbing. This caused me to push a little harder—I wanted to get done as soon as possible. But no matter how hard I pushed, the wind seemed to push that much harder. I struggled to stay on the road as it blew me to the side. With the stiff creaking of my joints and my inability to stand up to the fierce wind, I felt like a human wind chime.

But even with the harsh wind, it was a beautiful race. We ran along the banks of the Mississippi, through large wooded areas peppered with small farms. It was peaceful. And even though it was a small race, the race support was amazing. There were so many people who braved the cold weather to cheer us on. The whole race just had such a pleasant vibe—even with the wind.

I was wearing my “CURE LUPUS” singlet under my jacket, and for the first two miles, I did not dare remove the jacket and face the cold air. But I started thinking about my goal of raising awareness. How was I supposed to raise awareness when no one could even see what I was running for? So, a bit reluctantly, I removed my jacket and tied it around my waist. I only put my jacket back on once—at mile 10 I started shivering and needed the warmth. But at mile 11, I removed it again and completed the race with my singlet showing. I received several “Way to go Running for a Cure” and “Come on CURE LUPUS” cheers, and I knew my decision to run without my jacket obstructing my singlet was the right thing to do.

Reacing the finish line with my CURE LUPUS singlet visible

I texted my husband at mile 11 to let him know I was close, and when I got to the finish, he and the dog ran next to me. I was very surprised that despite my struggles with the wind, my time was a PR. I came in at 2:06:35, which is below a ten minute mile. And it excites me to think about how much faster my time might have been if I didn’t have to run against the wind.

With handfuls of snacks after the race

After the race, I snagged two handfuls of food (I was starving), and sat down with my husband and our dog. Feeling a bit refreshed, I went to the car to take a runner’s shower—a wipe down with baby wipes—and change into clean clothes. Warmer and refueled, I went to explore the banks of the river with Steven and Lady.

Steven patiently waiting for me to finish snacking

LadyBug watching other runners cross the finish line

Clean, warm, and happy after the race!

May 10: A very brief update

I am officially 10% of the way to my goal to run 50 races in 50 places in less than 5 years! I have now completed a half marathon in 5 states: Kentucky, Indiana, Missouri, Ohio, and Illinois. Only 45 states to go!

(I'm very sleepy, so I will post about my fifth race later.)

Race 4: May 2 - Cincinnati, OH

Running usually makes me happy. There’s a very simple rhyme that describes the runner’s high that I feel:

“Running really makes me smile—

I think I’ll run another mile!”

It’s a bit silly, but it’s true…most of the time. Normally, running emotionally, spiritually, and mentally revives me. It challenges my body physically, but is an enjoyable, invigorating challenge.

Flying Pig medal and bib number

Today was the exception. Running hurt today. The heavy, deep breaths that I took clawed my throat and scratched my lungs. My legs twitched and wobbled with each upward climb. My hands felt like blood was pooling in them—weighing them down and putting pressure on my joints. Usually when I feel like I’ve reached my physical limits, I repeat to myself, “There is no pain! There is no pain!” After a minute or two of repeating this, I break through “the wall,” and continue with my run. But today I hit the wall early (mile 3), and I couldn’t seem to get past it.

I think the reason that I hit the wall early and wasn’t able to tear it down was because I was extremely grumpy this morning. I just wasn’t in the right mindset. With severe thunderstorms in the Cincinnati area, I barely slept. By the time my 4:30 a.m. alarm chirped, I had slept maybe a total of 4 hours. In a zombie-like state, I somehow managed to eat, get dressed, and gather my belongings without waking my grandparents. I went downstairs to my car, walked outside, and immediately felt the rain that was moving over the tri-state area.

Cold, damp, tired, and grouchy do not make a good combination. It took all of my willpower to resist the urge to march back up the basement stairs in my grandparents’ house, change into dry clothes, and curl up under warm covers. I forced myself to drive into Cincinnati, park, and finish getting ready for the race.

Even with performance socks, soaked feet + running = blisters

Luckily, I remembered to bring a garbage bag to wear over my running clothes. Runners often use garbage bags as raingear before and during races since they can easily be disposed of once the rain lightens up. It’s not environmentally friendly, but it works really well in wet races. The trash bag kept me warm and relatively dry at the start and for the first part of the race. I discarded it between the mile 2 and mile 3 markers. It became cumbersome, and since my socks and shoes were already soaked, trying to stay dry seemed moot.

Looking stylish in my garbage bag

I realized early in the race that I couldn’t let my grumpiness show—not while I was wearing my “CURE LUPUS” shirt. I didn’t want anyone to negatively associate my grouchy behavior with the Lupus Foundation. I forced myself to be friendly enough—thanking volunteers at the water stops, high-fiving little kids in the spectator areas, and talking to the Elvis impersonator.

Admittedly, I didn’t go out of my way to talk to other runners. Normally, I can’t resist the opportunity to talk to new and interesting people, but today I just couldn’t stand being around this huge crowd. Even so, I made a conscious effort to avoid irritating anyone. Hopefully, despite how grumpy I was feeling, I appeared to be a model ambassador for lupus awareness!

Soaking wet after the race

Update for April 30

Our DSL modem is fried, so we have no internet access at home. As I type this into MS Word, I realize the date in the title will not match the actual posting date. C’est la vie.

On Monday, I flew down to the Houston area to stay with my parents. My sister, who lives in Italy due to my brother-in-law’s Army career, has been visiting our parents. She and my adorable niece and nephew will be flying back to Vicenza on May 8th. I wanted to see them before they left the country, so I decided to brave the airport and fly home.

Normally, flying does not cause me any grief. I have been flying since I was an infant, and I have no fear of airplanes—and no fear of heights. But being on immunosuppressant drugs, I was a little nervous about being in a closed metal tube, breathing everyone else’s recycled air. I worried about what germs I would be exposed to—about what microscopic organisms were crawling all over the surface of my try table or seat belt latch. I decided to ignore my anxiety and fly anyway. Seeing my family was just too important.

When I arrived at the airport, my mother and three-year-old niece were waiting in the passenger loading zone. As soon as my niece saw me, she began waving furiously. My mom told me that when I waved back, my niece exclaimed, “I’m so happy now!” What a wonderful start to my visit!

While home, I tried to help my sister with her children. But I was drained from the flight. And my niece, with her infinite supply of energy, exhausted me. It didn’t help that I picked up a cold on the flight home, and it was slowly wearing my body down. I had a hard time sleeping soundly because I heard every noise my one-year-old nephew made. Every time he woke up babbling or crying, I woke up too. All of these factors affected my running schedule.

On Tuesday, after a night of tossing and turning, I woke up at 4:25 a.m. and went for a 68 minute run. I was quickly reminded how humid and uncomfortable running in Houston can be! After my run, my mother joined me as I walked a mile cool down. We chatted, and it was nice having some one-on-one time to catch up. On Wednesday, I went for a 50 minute run. After the run, I felt too weak to go for a walk, so I took some medicine and climbed back into bed. By Thursday morning, I was exhausted and my throat and sinuses were killing me. I did not complete any portion of my planned 40 minute run.

I am now back in St. Louis, and I can feel my suppressed immune system struggling to fight this cold. My lymph nodes are huge, swollen rocks. I feel dazed—discombobulated. I know getting over a simple cold is going to be so much harder while on Imuran. I just which I knew how long it will take—I have a race on Sunday!

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.

Jan 31 - Brief update

I will post in greater detail when I'm feeling better, but this past week was not my best. Honestly, I did not get a single thing done that was on my to do list. Not one thing. No exercise. No cleaning. No race planning. Nothing. Having the flu and the resulting lupus flare-up was just to exhausting and painful.

But I'm feeling better--not 100%, but well enough to fake it! I go to see the rheumatologist February 22 to get new medicine. I can't wait! I really want to feel human again. Also, I'm really tired of this butterfly rash. Today, it was really prominent. I tried to take photos of it, but with the lighting and the flash, they didn't turn out too well. But I'll post them when I'm feeling better.

Sunday, Jan 24

On Sunday, I was feeling a bit more mobile and did not yet realize that I had the flu. And after feeling trapped for three days, I decided that I was going to get in my 7 mile run. I know this was not a smart idea, but I needed to move. I’m happiest when I’m out moving—walking, running, dancing—I don’t care, as long as I’m moving. I get so tired of being in too much pain to move!

My husband decided to join me on this run, and, at first, it the run went pretty well. Up until mile 4, we were averaging 9 min/miles. But a little after mile 4, the pain hit. My joints stiffened with incredible speed. I felt my knees stiffen, then buckle under me. I winced with pain and caught my balance before I face-planted on the path. I was really glad my husband had just passed me and missed my painful moment. But after that, I couldn’t run with any speed. We ended up completing only 6 miles in total—spending the last two miles walking and jogging. We completed our last two miles at a 16 min/mile pace—we were very, very slow. I felt really bad for my husband since he stayed and finished with me even though I slowed him down. I’m very lucky to have someone so supportive!

Monday, Jan 18 – Saturday, Jan 23

Last week was horrible. I’m not complaining--just stating the truth. It was, in fact, horrible. I only got in one good run, and battled the flu for the rest of the week (and the beginning of the next week).

Monday: After the 5k, I had Monday scheduled as a rest day. Even though I did not run the 5k, but walked it, I decided to follow my schedule and rest. My body felt a bit off, and I thought I could use the rest.

Tuesday: I misread my schedule. Although I only had a 4 mile run, I thought I had a 5 mile run. Since my dear husband was busy with school work, I bundled up, put on my reflective gear, and hit the road. I felt sluggish and achy, but still managed to complete the 5 miles with a 10 min/mile pace. Not too bad. After the run, I lifted weights to make up for resting on Monday. I went to bed early—exhausted from my exercises.

Wednesday: We hired a new employee at work, so I got up early to head to be at the office by 8:30 a.m. I was supposed to train the new girl, but our internet was down. Then, our legal software, TimeMatters, shut down. We spent half the day getting the internet back up and running. After that, I spent 2-1/2 hours on the phone with tech support for TimeMatters. I was already feeling physically exhausted, but such an unproductive day left me feeling emotionally exhausted as well. I was so tired when I got home that I just climbed into bed and did not leave the warm covers if I didn’t have to. Needless to say, my 3.5 mile run did not happen.

Thursday, Friday, and Saturday: When I woke up Thursday, I could not move. I was immobilized by the pain in my joints. As humiliating as it was, I had to have my husband help me to the toilet. I just couldn’t get there on my own. My husband came home early from school to keep an eye on me, bringing me medicine and water. He turned the heated mattress pad on our bed up so the heat would help my aching joints, but nothing helped. I was a prisoner in my own body. I ended up missing work both Thursday and Friday. I stayed in bed all day Saturday as well.

But even though I was in considerable pain, I still felt lucky. My wonderful husband took such good care of me. He sat and watched tv shows on hulu.com with me. He lay next to me and held me as I cried. He brought me Papa John’s breadsticks in bed. What more could a girl ask for?!

Sunday, Jan 17: Cross training

Goal: Cross-train for 60 minutes
Actual: Low impact steps for 120 minutes

Since I have nothing interesting to say about my workout, I'm posting pics from the Frozen Buns Run!

Steven pre-race:

Awesome refueling table!

One of many ice sculptures:

Walkin' with the Dead Bear sculpture:

You can stand under my umbrella: