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!