Partying to fight lupus
(From the East Rockaway Long Island Herald)
Valley Stream resident Christine Miserandino and her family celebrated her 37th birthday this year in an unusual way. Instead of presenting Miserandino with gifts, the family hosted an “unbirthday party” to raise money for lupus research.
Called the Purple Party, the third annual event was held on Sept. 7 at Pompei Restaurant in West Hempstead and served as a launch for Miserandino’s new charity, the But You Don’t Look Sick Foundation. Miserandino said she was inspired to turn the idea of a birthday on its head as a result of her own experience with lupus. “I have been living with lupus for over 20 years. We started to throw an ‘unbirthday party’ to raise money for lupus research two years ago when I decided I didn’t need gifts, but I wanted to give gifts to others and grant the wish of someday living a life without lupus. I remember being younger, when I was first diagnosed with lupus and wondering if I would even make it to 37, so now every birthday is such a gift and a reason to celebrate,” Miserandino said.
Myself and the S.L.E. Lupus Foundation's Young Leaders took Lupus Research to the Power of 10 in recognition of World Lupus Awareness Day May 10. A Flash Mob of volunteer dancers brought attention to lupus among hundreds of visitors to Union Square Park in Manhattan. Here's the video!!
Cool Events for My Friends with Lupus (Education Sessions, Free Yoga and Aquatic Tai Chi Classes, and Nutrition Certificate Program) /
Podcast of My Interview on "In Sickness & In Health- Dating Someone With a Chronic Illness" on The Naked Radio Show /
I earned this tattoo....
I know, I know, it's a temporary one but I earned the right to wear it. On Sunday, March 19th, 2012, I ran 13.1 miles in the NYC Half Marathon. I did this to raise money for the SLE Lupus Foundation and also to show that even though I'm living with Lupus, I can still accomplish an amazing physical goal.
My day started at 5:30am. Even though I prepared the night before by putting out all my clothes and carb loading at a pasta party my running group Black Girls Run threw, I still felt like I was scrambling. This endeavor had me more nervous than I've ever been, even at a show. "What could go wrong? Just finish. That's all that matters." I encouraged myself and checked my twitter & FB for encouragement from others.
Once the race started, I felt like an ant in an ant farm; there were so many people scattering in the same direction. My biggest fear in this race was the first 6 miles in Central Park. I truly felt unprepared for the plethora of random stupid hills all over the park. Due to my busy schedule over the last few weeks, I missed official Team Life Without Lupus trainings in the park, and man, by the time I got to the 7th Ave exit, my right foot was pissed at me.
People asked me if I stopped at all. Yes, a few times. To replenish at the gatorade/water stations, to re-tie my laces, once to use the port-a-johns (you don't wanna know why), and to stretch out random stiff parts of my body. At one point in time, my foot, lower back, left hip, and chest were all on fire. As I watched a one-legged man with a sporty artificial limb breeze past me (I was one part amazed, two parts embarassed at my slow pace), I sucked it up and focused on the end.
As I made my way down 7th Ave to 42nd Street to the West Side Highway, I was proud to be one of the people being cheered on. It was great seeing my BGR sisters waving banners along the route as well as the random folk giving high-fives as you passed them by. One sign stood out:
"Run like you stole something."
If that was the case, I'd have gotten caught. By the time I got to the 20s on the West Side Highway, I swore I was gonna need to be carried off course if I ran at the pace everyone else was. So I slowed down to a simple lil jog. Besides, everyone around me was running FOR a cause. Darnit, I AM the cause. No killing myself.
I was a lil jealous of the people who's families had cardboard signs with runner's names on it, but I remembered, I'm not running for anyone other than myself and people like me, many of which couldn't be there.
The last mile was gruesome. The final incline to get through the tunnel near the Battery Tunnel to the highway exit for South Street Seaport was murderous on my foot but I got through it, and jogged as best as I could to get to Water Street where the race ended. I crossed the finish line and almost laid out right In the street. My friend Gigi from college was there waiting for me. They gave all participants a medal, water, pretzels, an apple and a foil sheet to wrap around our bodies to keep us warm.