Wednesday, November 11, 2009

Rachel Pally gets into the Loop for Lupus Awareness!

I was beginning to feel as if my actions were making a difference. In the name of LA Lupus Awareness, I was taking action. I had participated in a clinical trial to advance the cause of Lupus Research. There was a tweet from Alec Sulkin, a writer/producer of "Family Guy", @thesulk on twitter featuring Lupus for the punchline. I had given an orange Lupus Research bracelet and information to Constance Marie. {read more in my previous blogs} Yet I still had to let people know about Lupus LA's "Hollywood Bag Ladies Luncheon" -- one of the reasons I started LA Lupus Awareness in the first place.

The annual event is taking place on November 18 at the Beverly Wilshire Hotel. The Lupus LA event is fun and fabulous. There is a silent (and somewhat wild) "handbag" auction, this year's honorees are Melissa Joan Hart and Janice Arouh of Hallmark Channel and a fashion show by Versace highlights the event. With the luncheon in mind, I thought it would be perfect if I could get Melissa Joan Hart involved in my LA Lupus Awareness campaign.

Now I have a new found appreciation for the power of social media because when Melissa Joan Hart @MellyJHart tweeted about "getting into the loop" I felt LALA (aka LA Lupus Awareness) success instantl, as if getting Melissa Joan Hart to tweet was the official earning of the stripes.
Getting an orange Lupus Awareness bracelet and information to Constance Marie and having @MellyJHart 's tweet (specifically she retweeted me: "RT @LALupusLady did you know that @MellyJHart is going to be honored by Lupus LA on 11/18? please get into the loop before she does.") were great steps on my path to create and raise LA Lupus Awareness. As I mentioned before, I can be shameless and I began asking for and getting positive response wherever I went. I wore my orange bracelet and Lupus t-shirts on my daily errands and trips to the market. I had asked (via twitter) Sandra Bernhard if she would support me in raising LA Lupus Awareness. She did. Sandra tweeted "@lalupuslady that's a big job bless you of course i will support you #LA Lupus Awareness we've got to beef up our immune systems kids!" (I was bursting at this point)

The only thing lacking from my awareness campaign was pictures... I was determined to get evidence of my next "awareness action" on camera. In fact, I wanted to actually get someone in the loop (An orange elastic loop!). Thank goodness once again for social media. It was on twitter that I found out that Rachel Pally was going to be at her Pop Up Shop personally styling shoppers. Rachel Pally is a Los Angeles-based designer who understands a woman's body and her collection is a constant staple of California style. Rachel created the classic caftan dress and her jersey is perfect fabric for the easy-to-wear clothing she designs. It was kismet that Rachel was going to be in her shop. My only hope was that she would be as cool and fun as her designs.

As I entered the store, Rachel greeted me and finished up with stylists who were there to select some pieces for Drea DeMatteo to wear on a future episode of Desperate Housewives. Then Rachel turned to me and as we started talking about how she loved to wear long dresses everywhere even to the supermarket and post office, she handed me one dress after another to try on. I love her style; it seems effortless and yet so put together. I never would have thought to try on a black and grey floral print wrap-around dress. Usually I shy away from prints, but the floral pattern was subtle and the ultrasoft fabric simply made this dress a "must have" and a classic. Yet Rachel thought it would work --not only did the dress work but it flattered me. The dress hugged my body in the right places and floated as I twirled around the store.

Rachel is beautiful--her long brown hair and infectious smile, as well as her energy, made it easy for me to tell her about living with Lupus. I gave her an orange Lupus awareness bracelet and a brochure with information on symptoms of Lupus. Then I told her about how I started LA Lupus Awareness and I needed something to wear to the "Hollywood Bag Ladies Luncheon". With that, Rachel headed to a rack and handed me a basic black dress. It didn't look like much on the hanger, but once on it turned into an upper-body-hugging v-neck long sleeve dress that I could style in a number of ways. For the luncheon, Rachel said I should wear it with a black peep toe slingback; after the luncheon I could wear it with my black boots and take it anywhere from the post office to a Beverly Hills fund-raiser to shopping at Whole Foods. Rachel showed me to enjoy comfort and style wherever I go, and that you are overdressed as long as you feel pretty.

Rachel agreed to get into the loop for Lupus but only if I would join her. I happily present the picture of Rachel Pally and me in the loop for Lupus Awareness. I am truly grateful to Rachel Pally for getting into the loop for Lupus and especially for helping me achieve the first photographic evidence of a successful LA Lupus Awareness campaign.

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.

Monday, November 9, 2009




Before I began my LA Lupus Awareness campaign, I knew that it was going to be something special and magical. I knew because on Sunday night, October 25th, on the Sunset Strip, in the bowels of the Key Club, after the Emilie Autumn show, I met Veronica Varlow. Veronica, who is (according to her Twitter bio) the "Danger Dame of Burlesque, Filmmaker, Confidence Coach of Femme Fatales, Evil Mastermind of World Domination". I became aware of Veronica Varlow online because her body is seen in silhouette in the branding images for Purple Lab NYC. I developed a major "girl crush" on Veronica Varlow as soon as I saw her in the videos for Purple Lab on YouTube. Veronica embodies everything that I long to be-- she is sexy, fun, warm, confident and very comfortable in her skin. Meeting and speaking with Veronica Varlow after the show was insane and beyond fabulous. In person, as she is on video, Veronica is warm, friendly and accepting. She "got" me and all that that entails. I was a bundle of passion and excitement. I felt just like I did when I was going to see a Rick Springfield concert (if you don't know who that is, Google him!). When I finally spoke with her, I was nervous and anxious but I told her all that she has brought into my life. The feeling that it is more than okay to be a woman and take up space as you walk-- own it. "Feel comfortable in your skin." Telling her about the difference that she and Purple Lab NYC have brought into my life brought tears to my eyes ("real cool", I know, but I am who I am and I got teary) and it was an incredible moment. Then, to make the moment even more incredible, she gave me the 'key' off of her neck. The 'key' that she wore on stage that night. As she put it on me, around my neck, she told me that it was a "magical" key. {I can't believe she gave me the key!}
I began to tell her about how empowering she is and how I have become "LA Lupus Lady" and that with her help and the amazing lip gloss "Huge Lips, Skinny Hips" from Purple Lab NYC that my life was changing. I was "owning" it.
To be truthful, I began this blog as a way to increase votes for my entries in the 'Kiss and Tell' contest. Now, I am going to take the inspiration and do something. I am going to start spreading Lupus Awareness around Los Angeles. She smiled and I asked her if I could give her an Orange Lupus Awareness bracelet. She immediately put it on and told me that I was going to be her guest at the VIP After-Party, which included a special reading by Emilie Autumn with Veronica and the rest of the Bloody Crumpets. I was overwhelmed by the incredibly talented women and seeing them close up and without the stage lighting made them approachable and real, honest inspirations rather than uber-talented stars of the burlesque world; though, in fact, these women before me were both.
Honoring the power of feminine bonding is an essential part of being a Lady. Finding the beauty and magic within each of us is also a crucial part of the journey. Part of my journey and process to finding the balance is this blog. Thank you for reading it and thank you to Veronica Varlow, Emilie Autumn, the Bloody Crumpets and everyone at Purple Lab NYC for inspiring me each and every day.
I've started this blog as a place to explore my issues as a woman living with Lupus and struggling to balance being an LA Lupus Lady. I am grateful for the chance to share my thoughts. Thank You for reading them. Check out my videos on YouTube at www.youtube.com/user/LALupusLady and follow me on twitter @LALupusLady. Be Well, Be Strong.

LA Lupus Awareness aka LALA

After my trip to Washington D.C. and Capitol Hill to advocate for Lupus I was excited to continue promoting and sharing Lupus Awareness with everyone I meet. I learned that I can be somewhat shameless and still remain true to who I am by using Facebook and Twitter during a "beauty contest" when I was asking friends and followers for votes in the Purple Lab NYC "Huge Lips, Skinny Hips" Kiss and Tell promotional campaign. I won one of the "Most Viral" titles
and used that win--and Purple Lab's idea of women are "Multi-tasking Mavens"--as inspiration for my Halloween costume and LALA, my name for LA Lupus Awareness. I realized that I could use that same shamelessness or chutzpah to benefit Lupus Awareness and Research.


Like the "Kiss and Tell" contest from Purple Lab, I wanted to create HUGE awareness for Lupus. After I recovered (when you have Lupus--at least with me--my body pays a price when I travel across the country, go to meetings with members of Congress on Capitol Hill and travel home again; the three days after my return I refer to as "recoup and regroup") from my trip to the nation's capitol, I began to think about creating a plan for my idea. First, I wanted to learn the latest Lupus news from the medical professionals. I went to the annual Lupus Patient Symposium sponsored by Lupus LA held at UCLA Medical Center to learn more about the latest research, current treatments and innovative therapies. I think it is important for Lupus patients to always keep themselves educated about current Lupus news and information. The annual symposium is a great way to stay informed and to connect with other Lupus patients. Connecting with other Lupus patients is one of the best ways to find comfort and support within our community. Whether attending a patient symposium or a local support group I have found the best support comes from someone who has been there and has gone through the same or similar circumstances. For me, the best thing about going to the Lupus Patient Symposium wasn't the incredible news about the clinical trial progress of one of the first new drugs for Lupus patients in over 50 years (Benlysta; since the day of the symposium Benlysta has had positive results in Phase 3 and is moving on to FDA approval). The best thing was that it was there, on a Saturday morning in Westwood, that I finally met Carmen--a friend and fellow "Lupie"-- in person. Carmen is one of the first Lupus patients that I connected with on Facebook and it was great to actually hug her instead of sending her a virtual one.


Armed with the education of a one-day patient symposium I was determined to continue to raise Lupus Awareness throughout and within Los Angeles. I planned on doing what I could do to raise Lupus Awareness between the Shopping Day on Rodeo Drive and the annual Hollywood Bag Ladies Luncheon. I created a video for YouTube on this year's Shopping Day on Rodeo Drive.


The YouTube video wasn't enough--I wanted to do more. I was determined to do more for Lupus but unsure of how to go about it. A bit later, as I was cleaning out my purse, I saw the flyer for the Lupus clinical trial that I heard about at the Patient Symposium. This clinical trial is studying links between Lupus and increased risk for CVD (Heart Disease) so I called the number and made my appointment to join in my first clinical trial. Though I have been a Lupus patient for over 26 years, I had never participated in a clinical trial before. I had little concern about the process, since Carmen had told me how easy UCLA had made it. You go in for your appointment, talk to the doctor, have your labs done and then your neck x-rayed. Carmen was right. The process was simple. After answering a few questions to verify my eligibility, I was given an appointment and place in the study. Once I arrived at UCLA Rheumatology Department, the clinical trial was easy. The patient intake--answering questions about my Lupus diagnosis and presence of Lupus activity--took less than an hour. Next, I was taken to the lab and I had my blood drawn; about 10 tubes were taken in addition to the two tubes of blood for a genetic study of Lupus patients. After the blood was drawn, I had to go to the Ultrasound Center for the ultrasound of the artery in my neck. The ultrasound of the artery in my neck will show the presence (or hopefully the absence) of plaque in my arteries and serve as a guideline for my propensity towards heart disease as a Lupus patient. The Ultrasound Center was located in a different part of the UCLA campus , so I moved my car and parked in the underground parking lot. I walked toward the elevator to go to the Ultrasound Center and that is when I took an elevator with Stevie Wonder. He was with his driver/companion and was whistling in the elevator.

That is when I said "Mr. Wonder, I enjoy your work."



He smiled extended his hand and said "What's your name?"



I replied "Amanda, I am LA Lupus Lady" as I smiled at my own response.



The elevator doors opened and Stevie said "Nice meeting you, Lady."



With those words, I got off the elevator and found the Ultrasound Center. I went inside and instead of my name I gave the receptionist my medical reference number for the clinical trial, and the receptionist told me that I would be called by the name of the study and not my name when the technician was ready for me. A few minutes later I was called. After verifying that I was there for the Lupus study, I sat down on the table in the room and then I laid back as the technician placed some gel on the right side of my neck and I turned away from her she rubbed the ultrasound wand over my neck slowly and repeatedly. The same thing happened on the left side of my neck and then I was done. A short drive to UCLA, a few questions about my Lupus, a blood draw and a neck massage all in the name of Lupus Research. If you want to participate in a clinical trial for Lupus, you should visit the website http://www.lupustrials.org/ for all the information you will need to get started.

video

I would like to thank Karen Robinovitz and everyone at Purple Lab NYC for not only inspiring a Halloween costume but the idea for "LALA" as well. ~ More on my LALA activities aka LA Lupus Awareness coming very soon. If you can't wait for the blog update, then follow me on Twitter via @LALupusLady.