Tuesday, November 10, 2009

LA Lupus Awareness started as an idea I had to raise Lupus Awareness for Lupus in Los Angeles. I am a patient/advocate and realized that without something different that my cause could get lost in the fray. My goal is to increase visiblity for Lupus in Los Angeles (and across the universe). The phrase commonly used throughout the Lupus community is "get into the loop for Lupus" and with that in mind, I got an orange loop and set off on my #LALA adventures.
Before my clinical trial at UCLA, my first official action for LA Lupus Awareness, I had started requesting Lupus support from across my twitter community. While enjoying a fabulous night of feminine talent and power I was able to start #LALA early as I gave an orange Lupus Awareness bracelet to the fabulous burlesque star "the Danger Dame" Veronica Varlow. She, in turn, gave me a magical key necklace. Veronica's Magical Key worked fast.
The next day, I woke up and was thrilled (overwhelmed, really!) to receive a DM from @thesulk. Alec Sulkin is a producer/writer on my favorite Fox comedy "Family Guy" and I had asked him a few weeks earlier if he would tweet a joke about Lupus. The DM simply said "um, you may want to check my latest tweet. ; )" With that, I went to his latest tweet and read "If Jesus was named Lupus Christ, would that mean people with Lupus would now have Jesus?" I smiled then and I smiled now as I typed it for this blog. I believe that laughter is powerful and strong medicine. That Alec took the time to use his very funny mind to come with this gem of a Lupus joke makes me smile. His tweet gave me the energy to believe that I could do this. One woman can do her part to raise Lupus Awareness.

Now--to take it to the next level and make #LALA memorable. That is where the orange loop comes in. I was feeling tired and rundown, usual for a Lupus patient but unacceptable to me as I had #LALA planning to do. But my body often wins in the battle between mind and body. I tweeted about my aches and somehow got the energy to finalize the details of my participation in my first clinical trial for Lupus. (Read about the clinical trial details in a previous post) When I returned home from UCLA, after my clinical trial I had my husband take the picture you see here, it is a picture of me seen through the loop.
The following day, I woke up feeling drained and recalled that I had given too many tubes of blood for Lupus Research. Starting the day slowly watching "Good Day LA" on Fox 11, I was taking it slow and easy and then Constance Marie appeared in a news segment, on the screen. Constance was the celebrity endorsing a reading program at the Culver City Public Library. I felt if I could only manage to get dressed and ready in a hour, I could get her into the loop for Lupus. As fast as I could muster (picture a snail going as fast as she can) I got showered and dressed. I drove the short distance to the library and--wouldn't you know it--as I parked my car, I saw Constance and her companion (an assistant or her publicist, I don't know) heading to her SUV. If I didn't act fast, the entire morning rush would be for nothing. So I asked if I could give her a Lupus Awareness bracelet. Her companion said "sure". And I dug through my purse and found an orange bracelet; while the two of them were packing their car, I also managed to somehow find the one-sheet of Lupus information. Whew! I did it! I got her a bracelet and information. Somewhere on it, the pamphlet said that "90% of people with Lupus are women." Another one of the facts about Lupus that is on the flyer I gave to Constance Marie is that "Lupus is more common and tends to be more severe among African-American, Latina/Hispanic, Asian and Native American women." As a woman living with Lupus, I am glad that I gave one of the most famous Latina women in the world some information about Lupus. I hope that she read the information. I didn't get a picture or evidence of my outreach effort via a tweet. But I felt good sharing the LA Lupus Awareness with Constance Marie.
With over 1.5 million Americans diagnosed with Lupus, chances are that someone you know has Lupus. That is only one reason why I am doing what I can to raise LA Lupus Awareness.
I get my Lupus bracelets and printed information from my local Lupus organization, Lupus LA. The picture above features Adey and Elyse work non-stop from their desks in the Lupus LA offices. I am grateful to Lupus LA for their efforts in fighting to fund innovative Lupus research and support patient services.
More #LALA reports coming soon... and I get my first photographic evidence of getting a celebrity into the Loop for Lupus.

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