Lupus and pain scales

When you tell your doctor that you are experiencing pain, the doctor often asks what type of pain you are feeling? Sharp pain? Stabbing pain? Dull pain? But the problem with lupus is that the answer can be all of the above. You can feel a dull ache in your joints while resting, but an intense, sharp pain when you try to bend them.

And the answer is also complex when the doctor asks, "On a scale of 1-10, how is your pain?" Different areas of the body experience different levels of pain. And as a lupus patient, you live with almost constant pain during flares. So, you start to get used to pain. And as your pain threshold grows, your pain number can decrease despite no change in actual pain levels.

When I'm stressed, my pain levels fluctuate so dramatically. This makes it so hard to plan activities and to plan projects. And not being able to plan projects makes the stress levels increase. It's very cyclical.

Anyhow, this pain has made remodeling and building difficult. In the last 3 months, I've not accomplished as much around our new-to-us house as I have planned. We have a huge list of to-dos, but haven't made as large of a dent in it as I'd like. But we have made a dent, and I'm thankful for that. We have had our wood floors refinished. One of our bathrooms has been remodeled, although the contractors didn't do a very good job and we're going to have to redo it. I have made a beautiful upholstered bed and tufted headboard for our bedroom, a new rustic & modern dining table, an upholstered storage ottoman, a tilt-out garbage bin, a liquor cabinet, a side table, and refinished two chairs for our den. I still have to finish a daybed, chairs for the dining table, a bench for the dining table, a laundry basket dresser, a shoe dresser, and two small square ottomans for in front of the daybed. The to-do list just seems so large! I just hope it's not too cold of a winter as the cold makes the pain worse! I just have to remind myself that I need to suck it up and deal with it :-)

No races right now

I haven't be able to run any races in a while because too many other things are going on in my life.

First, my blood pressure has been too high, and my Dr. doesn't want me to stroke out while I run. So, she told me not to run until we can figure out if my lupus is hurting my kidneys, and until we can get my numbers down. Luckily, it's slowly getting lower, and will hopefully be back to normal soon. I can't wait to get clearance to run again!

Second, my husband and I just bought a house. It was a foreclosure, and it needed a lot of work. We've been using our spare money (a.k.a., my racing fund) to renovate and furnish our new place. Working on our house has been a physical drain. With the stress and physical activity, I feel like I'm in a constant flare-up. It's really hard to hold a saw steady when your finger joints are swollen and inflamed.

Third, any extra money we have that hasn't gone into the house is being saved so we can visit my grandparents. My grandfather has inoperable, un-treatable pancreatic cancer. I want to spend as much time as possible with him before he leaves this world for a better place.

With these three interrupting factors, my racing has been put aside for a few months. In a couple of months, I should start again. But for now, there are other things that need my attention.

Race 11: February 27 – Cowtown Marathon

On February 25, my husband and I flew to DFW for the Cowtown Marathon in Fort Worth. His mother and stepfather came to meet us at the airport, and drove us to their house in Fort Worth. Arriving two days before the race gave us time to hang out with friends, and catch up with family, which was lovely.

Saturday, my mother-in-law enjoyed a day of exploring different eateries in Fort Worth. I enjoyed a delicious lunch of a chicken salad croissant, cake, and gelato. I was having a wonderful time with my mother-in-law, when my head started to throb and my lupus medicine began to churn in my stomach. I asked if we could call it a day, and we went back to their house. There, I spent the rest of the day and night terribly sick. I couldn’t keep down any food. I was cold and clammy. I ached all over.

When Sunday morning came, I debated running the marathon. But our friend Derek came down from Tulsa to run it with me. And I couldn’t bear with the idea of paying $85 for a race without completing it. Therefore, I decided to run and, if needed, walk the race.

We started off at a good pace, and Derek and I chatted—catching up on our various life events. I still ached, but I was having fun. We ran through downtown Fort Worth, and the course was nice and shady. Our pace was easy enough for periodic text messages and phone calls to and from our family members (my parents drove up from Houston to cheer us on).

At mile 13, my husband, the best man from our wedding, and my in-laws were waiting in front of a friend’s house, ringing cowbells and cheering us on. We stopped, briefly. And my husband gave me some medicine for my aching joints. He also told me where my parents were (they hadn’t quite arrived at the city by this point).

At mile 19, my husband, parents, and in-laws met us. By this point, I was feeling weak and extremely achy. I stopped and talked with my parents for a bit. I told Derek to run on without me. He protested, but eventually I convinced him. My parents and husband walked with me a little bit, and then they left to meet me at the finish.

At this time, the course was getting very sunny. The sun is like kryptonite for a person with lupus, and I quickly felt what little energy I had fading. But God sent me an angel in the form of another runner, who had stopped to walk. I finished my last 5 miles with an older gentleman whose name I can no longer remember. We walked those final miles, chatting about our families, jobs, and travels. He encouraged me, and I did the same for him. This man, whose personality was so much like my father’s, made sure I finished what I started. He even encouraged me to run over the finish line, despite our 6+ hour finishing time.

I’ve had better and faster races, but I don’t think I’ve ever been so proud of finishing a race. I could have easily quit, and used my lupus as an excuse. But I didn’t let my upset stomach, aching joints, or dwindling energy stand in my way. Lupus may have slowed me down, but it didn’t drive me to quit!

Race 10: November 21 - Tulsa, Oklahoma

I've been procrastinating writing about this race. This was by far the worst race I've ever been to. It was a horrible, gut-wrenching experience. At this race, I saw a young man die.

I was shortly behind the 27 year old guy when he collapsed. When I saw confusion, I sped up and reached the man just as a cardiac nurse was starting chest compressions. I was just one of many racers who stopped to help and offered to take over when the nurse tired, which she never did. She was amazing. For a full 6 minutes, she performed CPR. I just sat, helpless, feeling for his femoral pulse. His pulse was at best, thready and weak, at worst, nonexistent. The only air that came out of him was agonal breathing.

After a couple of minutes of compressions, we wondered where in the world the EMTs could be with the AED, so I sprinted down to a police officer that I had seen. When I asked him if he knew where the closest AED was, he gave me no verbal answer. Nor did he seem to care that there was a runner who cardiac arrested. He just grunted in the direction of the distant-sounding ambulance sirens.

Frustrated, I sprinted back to a medical tent. Again, this was useless. While the medical volunteers at least seemed genuinely concerned, they said that there were no AEDs on the course. I was shocked to hear this since a runner had previously passed away during this race.

When I made it back to the man, the nurse was still performing compressions. She was intense, concentrating on trying to keep this young guy (a kid in my 30+ mind) alive. Shortly after I returned, a race official pulled up on a golf cart. He asked if any of us knew the man. None of us did. The only thing that we knew was that his first name was Marcus--it was printed on his bib. The official seemed confused when we runners explained to him that Marcus was not carrying any keys and no longer had his bag claim tag attached to his bib, so it was logical to assume that he checked a bag at the bag check tent. We explained to the official that the bag would contain Marcus's personal items. But, again, the official just looked confused and stood staring at us for way too long.

By the time the ambulance reached Marcus, the four minute window for the best response to the AED had elapsed by two full minutes. The EMTs took over compressions and hooked the man up to the AED, but it was to no avail. He was never revived. And my heart broke as they took him away because I knew he would soon be pronounced dead.

After Marcus was loaded into the ambulance and taken to a nearby hospital, the nurse (whose name I unfortunately forgot) and I walked together for a mile. She was an amazing person, and she, too, was disappointed in the emergency response time. After a mile of walking and talking, we fell into silence. Then we went our own ways. She decided to run to the finish line (where, incidentally, she greeted me with a hug when I finished). And I decided to call my mother and cry.

I was just so upset with the race situation and needed to talk to someone about why I never want to run in Tulsa again. The medical tents were not well stocked, race officials were clueless, and the police monitoring the course were rude and not helpful.

(In case you're interested in Marcus's story, here's an article about his death. http://www.tulsaworld.com/news/article.aspx?subjectid=11&articleid=20101123_12_A1_CUTLIN202598 His family and friends continue to be in my thoughts and prayers.)

Race 9: November 20 - Cotter, AR

The weekend of November 20-21, I had registered for two races: one in Arkansas, one in Oklahoma. Since we knew I would feel exhausted after the Arkansas race, my husband and I agreed that I would drive from St. Louis to Cotter. Then, after the race, he would drive to Tulsa while I rested. And this is how our weekend began. I went to be very early on Friday night so I would be well rested. We got up very, very early—at 1:30 a.m.—and I packed up the car. Steven and the dog both slept as I drove.

There was no traffic, so we arrived very early. After we parked at the school where the packet pickup was, I slept some in the driver’s seat. It was very chilly and humid, so the longer I could stay inside, the better. I waited until the last moment to board the shuttle bus to the start line by the river.

After being bussed to the start, the other runners and I waited in the cold fog to begin. Most of us jumped around and fidgeted to warm our frozen limbs. The few moments before the start were, admittedly, miserable. But once we began, the race was quite pleasant.

The course was an out-and-back on the road on the edge of the White River. As we ran, the mist settled on the river’s surface. It was beautiful—a quiet, peaceful race without any pretense.

Steven, still exhausted, slept in the car during the race. I didn’t want him to meet me at the finish area, so he stayed in the car until I was bussed back to the school. After letting him sleep for a while, I woke him for the post-race lunch. It was a lovely potluck that several race volunteers organized. I fueled up on chicken soup and brownies, and felt refreshed. Then, I did something that I haven’t done in years—I showered in a high school locker room and changed into clean clothes.

After such an early morning and a decent race time (despite a broken toe), I fell sound asleep as Steven drove to Tulsa.

My bloody broken toe

Race 8: November 7--Huntington, WV

The plane crash that killed 37 football players from Marshall University occurred in 1970 (eight years before I was born). Last year marked the 40th anniversary of that tragedy. Therefore, the race directors of the Marshall University Marathon and Half Marathon decided to honor those players during the 2010 race. During a section of the race that went through the grounds of the university, runners carried carnations to honor those who passed in that crash. It was very touching, making this one of the most beautiful races I’ve ever participated in.

This race was also fun. The last 100 yards of the race are run across the football field. As you arrive onto the field, a volunteer passes you a football. You then race to the finish line with your football. Upon scoring your touchdown, you get your medal.

The course was lovely, and, for a small race, had more volunteers and supporters than I expected. The best way to describe this race is to say it was charming and southern. In fact, the refueling options were very small southern town. There were hamburgers and hotdogs aplenty. The potato chip supply was staggering, and there were varieties of Little Debbies that I didn’t even know existed. You could also grab a fried pie and wash it down with your choice of Pepsi product. It was fun to look at the selection of food products, but I was really glad I had packed a lunch at Grandma and Grandpa’s. (I stayed at my grandparents the night before the race since they live less than 3 hours from Huntington, WV.) After eating my prepacked meal in the stands of the football stadium, chatting with some locals, I changed clothes and headed back to my grandparents.

Goals for 2010 reached

I ran 10 half marathons in 10 different states in 2010. The last three I haven't posted about yet. These three include the Marshall University Marathon and half, White River Marathon in Arkansas, and the Route 66 Marathon and half in Tulsa, Oklahoma. Something very tragic happened at the last race, so I just haven't felt like writing about these races yet. In time, I will include them.

In 2010, I also completed 52 books. I enjoyed this goal so much that I'm extending it to this year as well. Except this year I want to read MORE than 52 books.

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