Embracing the Sunshine

There have been many questions & a lot of curiosity about this picture… about the sign that reads “I am the girl who beat lupus to become an Ironman.” Here is my story.
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June 2003, I had just completed my first year of college at Texas Tech University. First time away from my parents’ house. First time being limited only by the rules/standards I set for myself. First time I could party as much as I wanted & there was no one to stop me. I could almost say that first year in college, I probably partied about 8 days a week. I never declined an invitation. I made my presence known at every pre-party, party, & after-party. I drank ALL the time. Somehow I still ALWAYS made it to class at 8am to take notes. Somehow I still had a very successful academic year, though I was hardly sober through it all & I very vaguely remember many nights.

That summer in 2003 I had just come home to spend the summer with my family, to recoup from all the abuse to my body, & to enjoy the summertime sunshine with my old friends. The sunshine unfortunately became the problem. I had spent a day in the sun with my friends & came home to find red swollen lesions on my face. I didn’t think much of it & hoped it would be gone when I woke up in the morning. Morning came & the lesions were still there but with a more distinctive shape. They were raised “c-shaped” lesions of various sizes. It was strange that they were all different sizes but still that same uniform shape. Someone asked if it was ringworm. So I tried applying Lotrimin cream for athletes foot. Didn’t work. Someone suggested it could be acne. No way! Acne doesn’t occur in such a strange regular shape. I went to my primary care physician & he quickly dismissed it as acne, sending me home with a prescription for antibiotics. What a fucking moron. If you saw the lesions yourself, you would know that there was something abnormal happening in my body. Something that would warrant a closer look by an expert. I never filled the prescription from that doctor. Instead I went to a dermatologist for a second opinion. One look at my face & he told me that he suspected he knew what the problem was but he would not tell me until the biopsy results confirmed it. No use in worrying me until he was 100% sure. Sure enough, the biopsy results read “positive for systemic lupus erythematosus.” That was the definitive diagnosis that I was looking for. I was then given a round of steroid treatments (injection & oral prescription w/ a tapering dose) which calmed the lesions & made them disappear within a couple of weeks. I was referred to a rheumatologist for follow up.

Only a month after the first episode, the lesions reappeared & I was having a second flare up. My rheumatologist ordered blood work to find out whether I had the lab markers that are characteristic for lupus. My ANA was positive (characteristic of lupus), low WBC (compromised immune system), CRP & Sed Rate were elevated (inflammatory markers), all the tell-tale signs that the lupus was present & that it was active. A couple months later, same thing happened again.  Same treatment – steroids & poof it was gone. After much discussion we came to the conclusion that the sun was the primary trigger for the flare ups. By now I was beginning to notice a pattern. I would expose myself to the sun for a prolonged period of time, I would feel extreme, debilitating fatigue for about a week (such horrible fatigue that even after a 3 hour nap, I would still feel like I hadn’t slept in a week), then the unsightly lesions would begin to pop up on my face again. I nearly took a semester off because the fatigue was affecting my focus in school, but I loved partying too much so I decided to stay put & push on. I was prescribed Plaquenil daily as a maintenance medication & it worked to keep things under control as long as I made an honest effort to protect myself from the sun. I spent the next couple years hiding from the sun & learning to hate it. I walked to class hiding my face under a hat every day. I only came out at night to party; afterall, that was still my lifestyle of choice. I was young & ignorant & never realized that the partying was hurting my chances of allowing the lupus into remission. I vividly recall the day I received my acceptance letter from the University of Houston College of Pharmacy. I looked at my roommate & said “I can’t believe I got in!” She replied, “I can’t believe you did either!” lol, that should tell you how bad my party habits were!

It took a long time for me to understand that my body was confused. That lupus is an autoimmune disease where my own immune system was mistaking my very own body for something foreign & thus attacking it. I needed to stop adding insult to injury & take care of my body as best I could. I needed to provide my body with the best living conditions possible so that it could think clearly & maybe not make crazy mistakes such as attacking itself. My condition was classified as cutaneous lupus (a type of lupus where the effects are limited to the skin). But every year or so the symptoms would change… After a while I stopped getting lesions on my face & they would appear on my ears instead. Then it moved to my fingertips & then to my toes. Each time the lesions moved, I was sort of happy that they were no longer occurring in obvious places (my face) but there was the scare that the condition was evolving into systemic lupus erythematosus (where the condition affects multiple organ systems in the body). It was sort of a waiting game to see if I would exhibit any new symptoms indicating that my other organ systems were affected. Luckily that has not happened. It was pretty sad that I was only 19 years old & I truly believed that my fate had been predetermined by the lupus. I would think to myself, “the lupus, that is how I’m going to die.” After a while I decided I didn’t want to wallow in that idea any longer. If I concentrate my energy on creating a better now, perhaps the future will play out differently.

When I left Lubbock, Texas, my mom suggested that this was a great opportunity for me to change my ways. She has always been an advocate of alternative medicine & especially nutritional healing. She promised to cover my grocery bills if I would eat clean & organic whenever possible. (She even gave me a Kangen alkaline water machine which I still use religiously to this day). But I was still partying often so the lupus never completely left me alone. I had a nice wake up call when I nearly failed my 2nd semester in pharmacy school. That was when I decided that I needed to control myself & focus more on school. As the partying lessened, the flare ups slowly became few & far in between. By the time I finished 4 years of pharmacy school, I was no longer taking Plaquenil to keep the lupus under control. Shortly after graduation, I was busy working & planning my wedding. The lupus had become an afterthought. It would flare up every now & then but not to the extent that it had in the past. It became tolerable. And during this time I was starting to notice that the sun was no longer as bothersome as it used to be. After the wedding, I had so much free time on my hands that I decided to start running. After all, I can be in the sun now! It took about 3 months, but I quickly learned to love the sport. And I’m thankful that marathon came into my life to give me a sense of progression because my married life wasn’t so fulfilling. I’m grateful that I found inner peace while running & embracing the sunshine.

The day I found the strength to remove myself from the marriage, I had begun doing short distance triathlons already. I always knew that one day I would attempt an iron distance race but I never made the commitment until I knew my reasons. After the divorce was finalized, I decided I would spend the next year getting myself back on my feet & also creating possibilities. I had to keep myself busy & out of trouble so triathlon was the perfect solution. I was exercising for my health, I was on a steady routine, I was eating well (even better than before), I was making healthy relationships, & I was growing as a person. I learned so much more about myself in one year of triathlon training than I had in the preceding 5 years. It was awesome & I knew it was right for me. I can’t say that I didn’t have any problems with lupus throughout my training. I did have a couple minor flare ups where I felt the week-long fatigue and got some tender lesions on the tips of my toes. They happened shortly before a race, but both times I was able to get my hands on a Medrol Dose-Pak & both times they went away in time for me to race. I never allowed the fatigue to prevent me from training. Instead I got my foot out the door & did my usual workout (may shortened or with lower intensity, but the workout happened nonetheless.) In the end, I was tired anyway, but it was better not knowing whether the fatigue was a result of the lupus or from the workout. I prefer the latter. By doing this, I felt empowered again. The possibilities are back in my hands where they belong.

Six months ago (January 2013), I began the 20 weeks of Ironman training. That was also when I found out that my blood work shows that I am positive for both Sjogren’s & Rheumatoid factor. (They are both indicators that I may develop the autoimmune conditions Sjogren’s Syndrome & rheumatoid arthritis). I must constantly be aware of my body & the changes that it undergoes. I must always be on the lookout for signs & symptoms that may indicate these disease states. But I am not worried nor am I afraid because today I have my health & the whole world in my hands. I will do everything in my power to keep it that way.

I recognized that my mind is my only limitation. To free my mind was to free my soul & I found that freedom in endurance sports. The training period strengthened my mind. When you develop the ability to channel that mental fortitude & passion into your actions, it becomes strength. My determination to remove all limitations & to create possibilities is what got me to the finish line. And I’m sharing this with you as a reminder that the possibilities are yours. The week following IMTX, the physical pain was still too fresh & I said I would never do a full Ironman again. But nearly a month later, I’m looking back at how much I’ve gained from this experience & I am honestly looking forward to doing it again.

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One response to “Embracing the Sunshine

  1. Your story is an interesting journey from diagnosis to control of your lupus. It is good that you have learned to listen to your body’s needs, and take care of yourself better. Thanks for sharing! LA

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