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.

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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.

Tuesday, September 15, 2009

2009 Capitol Hill Advocacy Day for Lupus Research!

Have you ever wondered what it feels like to make a difference? I felt like a megaphone as I gave a voice to Lupus patients on Capitol Hill on Tuesday, September 15th.
Through my involvement with Lupus LA, I found out that the Lupus Research Institute and the SLE Foundation 2009 Capitol Hill Advocacy Day was coming. Although our financial situation isn't stable (whose isn't these days?), I knew I had to attend. I asked my husband if I could use his frequent flier mileage and hotel reward points to be a representative for Lupus patients in Washington, DC and he wholeheartedly agreed. My husband--and family--made it possible for me to participate and I am grateful for their constant and ceaseless support in my journey to raise Lupus Awareness.

Last year, I attended my first Capitol Hill Advocacy Day. It was inspiring and awesome. I felt like my presence made a difference. Telling my story to elected officials (or more likely, their staffers) was amazing. Some people I spoke with had never heard of Lupus, while others had personal experience with the disease, with over 1.5 million Lupus patients in North America, it isn't unusual for "someone you know to have Lupus". Living with Lupus, I know first-hand what it is to face issues of being a patient with a chronic illness, and as weird as this sounds it was my "pleasure" to share these challenges with lawmakers and their legislative aides. Whether they knew about Lupus before my visit or were newly educated -- I knew that my presence was effective.

What happens on a Capitol Hill Advocacy Day is that an organization or coalition (such as Lupus Research Institute) gathers their constituents in Washington, DC to have face-to-face meetings with the elected officials (or their staffers) to discuss potential legislation and issues tied to the cause that they represent. There is always a ton of Congressional business going on at any given time, but with health care reform now at the forefront of the President's agenda, September 15th was a perfect time to have meetings on the Hill to advocate for Lupus Research and Awareness. (Don't get me wrong, if you can ever attend an Advocacy Day for an issue or cause you are passionate about I definitely recommend it, timing notwithstanding!) This year, our appointments were scheduled by lobbyists that represent the Lupus Research Institute throughout the year. Each appointment is important--though the meeting may only last 15-20 minutes, it is vital to be a face of Lupus and a representative of the Lupus community. Meeting space is at a premium in Congressional office buildings and are often held in a hallway or by a window--even leaning against a wall. The location doesn't matter as long as the meeting happens!

Though it had been over a year since my last visit to the Hill for Lupus, when I was walking the halls of the Rayburn House Office Building my sense of empowerment and inspiration returned immediately. I couldn't help but feel a tremendous sense of history and American pride. Knowing that somehow by entering the building with a purpose that I was transformed, I wasn't just Amanda or even LA Lupus Lady anymore but I was an advocate for Lupus Research on Capitol Hill. My megaphone turned on, I told my story and asked Congress to support Lupus Research and increase awareness by educating medical professionals. (WOW! This is so cool, I'm advocating for Lupus!)


My first meeting of the day was an appointment with my Congresswoman's (Representative Diane Watson) Health LA (Legislative Aide) to share my story and get to work for Lupus. The appointment went great. I cleared building security (much like an airport security process) and made it to the office in plenty of time to savor the triumph that is my journey. Waiting for the meeting before mine to end, I sat in the outer office and enjoyed the decor. It isn't everyday that LA Lupus Lady gets to sit on a couch surrounded by photos of (both) Clintons and political mementos. I soaked it all in. Then I was greeted by the Health LA and ushered into the office of the Honorable Diane Watson. I thought the outer office was incredible, but the idea of meeting in the actual Congresswoman's office took me aback. Somehow, I gathered my thoughts and made it through my appointment. Hitting the talking points, the ideas that LRI wanted advocates to mention in our meetings and getting personal by telling the story of my diagnosis, I truly felt that this appointment was worth the trip--and this was only the first meeting.
Because I had some time before my next meeting with Senator Feinstein's Health LA, I was able to drop-in on some other offices of California Representatives. "Drop-ins" are when you do not have a scheduled appointments and you stop by an office to see if the Health LA has a free moment to hear your "quick pitch"; if the Legislative Aide is unavailable, then you leave behind the printed information and follow up with phone calls and an e-mail, hoping that the issue will get to the Member (of the House). I was able to drop in on the offices of the Honorable Members of Congress that represent many different regions of California including: Brad Sherman (the Congressman from Sherman Oaks who inspired me to find a cause I believed in and advocate for it.), Sam Farr, Joe Baca, Xavier Becerra, Lois Capps and Loretta Sanchez.
The constituents from California met with the Health Legislative Aides from both Senator Feinstein's and Senator Boxer's offices. Then I went to meet with Hannah, the Health LA from Congresswoman Jane Harman's office ; she was very receptive and eager to learn about Lupus. After that meeting, while walking through the hallway I saw Congressman Solomon Ortiz of Texas, to whom I offered an orange Lupus Awareness bracelet. He accepted gladly and smiled with it for a photo op! Moments later, after I turned a corner to leave I saw Congresswoman Harman in person. I told her that she was a woman who lead me to get more involved in politics and that I was active in Young Democrats of LA and her speaking to the importance of youth participation got me to volunteer and that I had a great meeting with Hannah and hoped that I could count on her support for Lupus. She said I could and we took a photo.
That is what I thought would be the end of my advocacy on Capitol Hill. However, when I returned to my hotel room I had received a phone call from Brenda, the Health LA in Congressman Joe Baca's office, asking if I was available to discuss the Lupus information that I had dropped off at her office. Of course, I was available--the reason I was in DC was to advocate for Lupus with members of Congress or their staff.
The next morning, as I prepared for my second day of Advocacy on Capitol Hill, I thought about many of the reasons that I was there. I thought about my friend Heidi Rusche, who passed away from Lupus complications. I thought about Bonnie Romoff, my first Lupus support group leader ,who did the best she could yet still succumbed to the illness. I thought about my 'Lupies' online, people with Lupus that I know through Facebook and Twitter and how I wish that together we can work to fund research to find a cure for Lupus. I thought about my own struggle with SLE and I decided to stop thinking and start advocating.
And then it was Capitol Hill Day Two!! I can't believe that my Lupus journey has taken me from a multitude of doctor's offices all the way to the US Capitol. Yet there I was, in a meeting with Brenda, Congressman Joe Baca's Health LA speaking to her about the LRI and how the Congressman can help fund Lupus research. I don't want to speak in hyperbole but the experience of speaking with Brenda, about innovative Lupus research and the need for increased medical professional education was the highlight of my trip. I saw that Congressman Brad Sherman's office was directly across the hallway from Congressman Baca's office and since I know the Congressman personally I wanted to see if he was available to see me for a hug and a photo op? He was, and of course that's when I went in for the "quick pitch" for Lupus Advocacy! Congressman Sherman was incredibly nice--but then again, he has always been kind to me and my requests for improving constituent relations.
Later in the day, there was a Town Hall meeting scheduled with Senator Barbara Boxer. I arrived early to get a good location. At last year's Advocacy Day I learned that the Senator's Town Hall meetings are full, crowded with groups of advocates representing an array of issues that effect California. The Senator was running late and when she arrived she told the assembled group that there would not be time for a Town Hall today as she was expected on the Senate floor in mere minutes. She only had time for two group photos before she had to run, and literally she ran out of the room - and I followed along as I quickly told her quickly about the importance of funding Lupus research.
As I was leaving the Senate building, I left some other Senators the LRI's Advocacy Day packet of information via the "drop-in". My surprise at getting a meeting from a "drop-in" with Brenda of Congressman Baca's office was surpassed when a "drop-in" led to an instantaneous meeting with New Mexico Senator Tom Udall's Health LA, Ben! What an incredible way to end my 2009 Lupus Advocacy!
On Wednesday night, I played tourist and enjoyed the Washington DC monuments. The monuments are always impressive but with the spotlights shining they become something more. Then exhaustion set in... somehow I made it to my hotel room packed and got to Dulles.
Now I'm back home. Just because I'm not in Washington, doesn't mean the megaphone is going to be put down. I'm LA Lupus Lady and I advocate for Lupus wherever I am.

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Monday, September 14, 2009

I'm in DC for Lupus because...

September 15, 2009 - Lupus Research Institute Capitol Hill Advocacy Day!

I am in Washington, DC today because I have Lupus. I am doing what I can and then some. I never would have thought that the diagnosis of a chronic illness would be the start of a journey that took me from long suffering Lupus patient into an advocate on Capitol Hill.

I have lived with Lupus for more than a quarter of century. I am here because my husband has generously allowed me to use his frequent flier mileage awards and hotel points to receive this luxury of being able to travel to represent the "patient voice for Lupus Research." I am not paid to be here. I am not a "professional" lobbyist. I am here today because I am passionate about improving the quality of life for those who have Lupus and those that love them.

I am here in Washington, DC because 26 years ago when I was diagnosed with Lupus, my life expectancy was 5-7 years. Since I have been diagnosed with Lupus, the FDA has not approved a single drug treatment for the illness. There are promising new prescriptions drug treatments in the crucial clinical trial phase but until there is a new FDA approved Lupus drug there will not be a cure. I will not stop advocating for patients who suffer from Lupus until there is a cure.

I am dedicated to representing those with Lupus who cannot be here in DC. If you want to be a part of Capitol Hill Advocacy Day join in. If you can pick up a phone, you have a voice. Call your local Member of Congress. Let your voice be heard. If you don't call, who will? You can call your Representative's local office or their DC office. If you don't know the DC office number for your Congressperson, look online or call the Capitol Switchboard, the number is (202) 224-3121.

In my last blog, I got specific about what the LRI (Lupus Research Institute) is asking of Congress. Please read it and when you call feel free to use it as a guideline for asking your Representative to work to make sure that your request is heard. You can call your Senator and tell him/her that you live in his/her home state and that living with Lupus is a challenge you tackle every day.

I feel it is important to lobby Congress to promote the interest of Lupus patients, families and researchers. My favorite part of Capitol Hill Advocacy Day is being able to put a face on the disease. I have Lupus and I vote. I have Lupus and I advocate. With over one and a half million people diagnosed with Lupus in North America, almost everyone knows someone with Lupus. Not all Lupus patients have the strength and ability (whether it be financial or physical ability) to attend the LRI's Capitol Hill Advocacy Day which makes it all the more special for me.

I like knowing that as a participant in Capitol Hill Advocacy Day, I am part of a unified coalition of Lupus organizations working together to do what working alone we would be unable to achieve.


Pictured above the LA contingent attending the Lupus Research Institute Capitol Hill Advocacy Day meeting before the Meetings with Members of Congress! From left: Dorothy Ellis, me (LA Lupus Lady), Linda David Executive Director of Lupus LA, Adam Selkowitz Chairman of Lupus LA's Leadership Council and Elyse Leon-Reyes Patient Services Manager for Lupus LA.

Sunday, September 13, 2009

LA Lupus Lady in DC!


After arriving in DC on the "red eye" from LA and heading to my hotel to relax for a bit. My friend Catherine met me and we walked around the city took some snaps as I settled into to what will be a busy week in Washington. As you can see, I went straight to the President's House...

I am here as a part of the Lupus Research Institute's Capitol Hill Advocacy Day. The National Coalition is the patient voice for Lupus Research. I have basically copied verbatim from the Lupus Research Institute's handout for participants in the 2009 Capitol Hill Advocacy Day and www.lupusresearchinstitute.org - click it and learn what you can do for Lupus!

A few of my Lupus friends have asked what can they do? Well, even if you aren't here with the National Coalition in DC you can let your voice be heard. Call your Congressperson and Senators let them know that you are a Lupus patient and a constituent of theirs and you and the LRI (Lupus Research Institute) urge Congress to sustain the nation's medical research enterprise and support the House funding level of $31.2 billion for NIH in the Fiscal Year 2010 Labor-HHS Conference Appropriations Bill.

-- Congress approves the budget for the NIH which funds various biomedical research including clinical trials and the research that can and will lead to a cure for Lupus. the request for $31.2 billion amounts to a 3 percent increase above last year and is $400 million than the Senate proposal.

also

The LRI National Coalition requests that Members (of Congress) support a provision in both the House and Senate FY2010 Labor-HHS Appropriations Bills to provide $1 million to the HHS Office of Minority Health to continue a new nationwide lupus education program for health professionals.

-- Lupus is up to three times more common among African Americans, Hispanics and Native Americans and affects over one-and-a-half million persons, 90 percent of whom are women.
Most Lupus patients often visit multiple doctors and go years before receiving a correct diagnosis.

Both House and Senate versions of the Fiscal Year 2010 Labor, Health and Human Services Appropriations Bill have recognized the urgent need for improved lupus education. Each bill provides for $1 million to the Office of Minority Health in the Department of Health and Human Services to build a national lupus health education program for health education providers.

The official wording of the requests for Members of Congress is how the Lupus Research Institute forms their official request, so if (when!) you call it will help to use the same wording. If you have any questions, feel free to ask me. I am still learning how this part of the lawmaking process happens. It isn't as easy as singing "I'm just a bill. A bill on Capitol Hill."

More as my DC adventure continues...

Wednesday, August 26, 2009

Lupus Research Institute Capitol Hill Advocacy Day -looking back and forward!

Somehow it seems appropriate that I am planning my second Lupus Research Institute Capitol Hill Advocacy Day trip as Senator Edward Kennedy goes from being a living legend to a part of the legacy. He was so inspirational when I heard him speak to young Democrats at the Conventions. My participation in Democratic politics and as a Delegate led me to focus my activism specifically on the cause closest to me, Lupus. ~ I just booked my tickets and hotel, thanks to my husband's frequent flier miles and hotel reward points. I will going to the 2009 Lupus Research Institute Capitol Hill Advocacy Day - on September 14 (advocacy training and the latest Lupus news) & September 15 (on Capitol Hill, speaking with members of Congress)

Looking forward to it, is an understatement. I can't wait to get back "in the the Loop" (I know it's inside the Beltway) for Lupus. I hope you can join me and the coalition of Lupus organizations that are participating in the 2009 Lupus Research Institute Capitol Hill Advocacy Day.

Looking back on last year's Capitol Hill Advocacy Day, I am proud and humbled that I was able to take part in conversations with Members of Congress on Capitol Hill about funding innovative research so that we can find a cure for Lupus patients, educating medical professionals about the signs of Lupus, which will lead to early diagnosis and proper care of Lupus patients and other Lupus issues. These conversations led to Congress funding NIH Lupus research and programs to educate medical professionals. Pretty much exactly what we asked for. That's why it is so important for us to have a voice and speak for ourselves on Capitol Hill. Whether you have Lupus, care for someone that has Lupus or simply know someone with Lupus. Please join me on September 14th and 15th and let your voice be heard.

video

See you in Washington, DC!

Teddy and me...

Just a quick note about me, before I became a Lupus patient advocate on YouTube and online, I was an activist for Lupus research and additional funding to support medical advances within my community and was fortunate enough to attend three Democratic National Conventions - two as a Delegate from California (1996 and 2004) and one as a volunteer for the producers of the 2000 Convention in Los Angeles. While the support for Lupus research and additional funding was a cause close to my heart. It was a state issue that prompted my political activism initially. I will cover more on that in later blogs.

memory in my head today --
Boston 2004 Democratic National Convention Hall - I'm psyched I just saw Ben Affleck and continue down a corridor when I see a group that includes Senator Ted Kennedy coming towards me. Smiling and looking directly at him, I ask the Senator "Are you in the loop for Lupus?" He relies "Yup" and that was my moment with Teddy.

Monday, August 24, 2009

Purr-fect Kitty Poledancer

My love for Purple Lab NYC's "Huge Lips, Skinny Hips" began with two shades - Kitty Poledancer and Worship Kate. Kitty Poledancer is a natural soft nude and Worship Kate is the yummiest shade of berry shimmer. Much more than the gorgeous color and amazing gloss, one reason I adore this brand so much is that every package of "Huge Lips, Skinny Hips" comes with a love note inside. The note describes how Fabulous Fashionista and Purple Lab NYC Creatrix Karen Robinovitz was inspired to name each shade. Within the Kitty Poledancer love note, I found out that Kitty Poledancer was a nickname that Karen got after taking her empowering S-Factor pole dancing classes. I love S-Factor. The sanctuary where the shared love of movement and femininity combine to enhance and enrich women (sorry, no men allowed) with power and grace that carries them through their lives. The classes are filled with beautiful, strong women who are as much athletes as they are dancers.

"Huge Lips, Skinny Hips" was coming out of my mouth as much as it was on my pout. I loved this multi-tasking lip gloss line so much that I was talking about it to anyone that would listen - the check out girl at Target and the lady at my dry cleaners - all about the lemon peel and meadowfoam. I was singing the praises of the lip plumper with Hoodia to my friends - both kinds, actual and virtual. That's when I found out that Purple Lab NYC had teamed with Brickfish to create the "Kiss and Tell Your Huge Lips, Skinny Hips I.D." contest.
Right away, I wanted to win the incredible dream fashionista trip to New York. To win I had to enter. (Not knowing at the time, that I was going to enter the contest for every shade.) I felt my entry had to be fresh and innovative like Purple Lab itself.

Instantly, the vision of my Kitty Poledancer entry in the Kiss and Tell Your Huge Lips, Skinny Hips I.D. came to me. My entry would be a picture of my cat wearing his sunnies. My picture for Kitty Poledancer was purr-fect! In it my cat, Bernie Williams (named for the coolest NY Yankee player ever!), was lounging with his blue sunglasses on, it was simple yet bold and cool. The blue sunglasses popped against his grey and white fur in the picture and it conveyed everything I had hoped for. I love Kitty Poledancer because wearing the lip gloss turns me into a beautiful sex kitten. The aisles of the supermarket became a catwalk, I strutted while shopping for soy milk and strawberries. Wearing Kitty Poledancer from Purple Lab NYC "Huge Lips. Skinny Hips" is fun. I feel bold and sexy like a cat who wears shades.

Now, I'll stop talking about my Kitty Poledancer entry in the Purple Lab NYC & Brickfish "Kiss and Tell Your Huge Lips, Skinny Hips I.D." and let you judge for yourself. Click the link. Please vote and review.

Brickfish Social Media: Purr-fect Kitty

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Thursday, August 13, 2009

My RED SOLE Story!

This is my RED SOLE story: The Red Sole entry (click the link below to cast your vote!) for the "Kiss & Tell Your Huge Lips, Skinny Hips I.D." contest from Purple Lab NYC & Brickfish is actually my third submission. (I have--at least--one entry for every shade in the contest). I had the idea for it first but waited for the right circumstances (lighting and a photog) and logistics to make it all come together. In case, you are wondering Kitty Poledancer & Love Your Thighs were the shades that I created, produced and submitted entries before RED SOLE hit the Brickfish ViralMap and i will tell you about those entries soon.

RED SOLE is typed in all CAPS as an homage to Christian Louboutin, the shoe designer famous for his red soles, who inspired Purple Lab NYC Creatrix Karen Robinovitz to name her knock 'em dead-perfect shade of red RED SOLE. When I put RED SOLE on my lips, whether with a quick wisp or if I layer it on with three coats, the color is always perfect--sometimes it is just more so. The color red usually implies heat, passion and fire. Purple Lab NYC's RED SOLE shade of Huge Lips, Skinny Hips is a combination of all of these things and more--it's a lip plumper that helps curb hunger. My passion for RED SOLE runs deep.


In thinking about how I was going to portray the way I love RED SOLE, I knew I wanted a close -up shot of my face that focused on my bold bodacious pout. I knew that I would wear sunglasses and not be smiling--all the best models never smile. I knew that my RED SOLE entry had to be more than just another non-smiling, sunglass-wearing, spotlight-on-the-pout picture. There needed to be an X-Factor (apologies to the S-Factor who inspired Kitty Poledancer, but that will be in the next blog) in the photo. The lighting was my "light bulb" moment--it simply had to reflect the power and strength that I feel when I wear RED SOLE. I love the natural light that beams into my dining room when the midday sun is overhead. The venetian blinds of the skylight even create a cool, striped shadow. I now had to wait for the midday shadow and my husband to be in the room at the same time--which I did. After a few test shots, checking angles and location of the striped shadow, Steve (my husband) said he had it. No way! The shoot was too easy! Yet, after checking the back of my digital camera, I saw that he was right. Captured in a moment of good lighting, a not bad angle, the sunlight hits my face just right as if I was shot by Bruce Weber. There I was: a sunglass-wearing, non-smiling, Huge Lips, Skinny Hips model. Who knew that an ordinary woman could become a model with a little lip gloss? Purple Lab NYC, that's who!

Here is my Kiss & Tell contest entry for RED SOLE, please click to vote.

Brickfish Social Media: Bold Bright & Bodacious

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The Kiss & Tell contest

My recent obsession with Huge Lips, Skinny Hips came to an explosive rapture of joy when I learned about the "Kiss & Tell Your 'Huge Lips, Skinny Hips' I.D." contest. Brickfish and Purple Lab NYC teamed up to create a contest that got me thinking about the variety of ways women have to empower themselves.

The contest rules: Each entrant reads about the inspiration behind the colors of the Huge Lips, Skinny Hips lip gloss (lip plumper infused with Hoodia) and then select a color that they identify with. Upload a fabulous photo of themselves and describe why the entrant identifies with the color they chose. Decorate the photo/entry with colors, text and symbols provided by Brickfish and click submit. It's so easy to enter--if you haven't already, you should do it now!

The "Kiss and Tell Your Huge Lips, Skinny Hips I.D." contest winner & a friend will be flown to New York City to share first hand the locations and people who embody the philosophy behind the Purple Lab NYC collection. They will have the true Purple Lab NYC adventure. Creatrix Karen Robinovitz is a hip, modern fashionista who named the Huge Lips, Skinny Hips after her passions, philosophies and inspirations. The Grand Prize is the chance to explore locations and enjoy experiences that embody the light behind the shimmery glosses.

Huge Lips, Skinny Hips shade names and influences:
  • Lychee Martini--sweet and sexy, this shade is named for one of Karen's favorite fruits. I like this coral color because it reminds me of a tropical island getaway. I find it hard to say Lychee Martini without smiling.
  • Red Sole-- named after the infamous colored sole of Christian Louboutin shoes. This is the perfect shade of knock 'em dead red, the color deepens when you layer it on, your lips become bolder, brighter and boosting with confidence.
  • Love Your Thighs-- this "not too pink" pink hue is named for Karen's philospohy that all women should love their bodies and appreciate who they are.
  • Kitty Poledancer--the pretty nude shade inspired by S-Factor, the empowering exercise for women only (yes, there is a stripper pole involved) and the nickname Karen's 'gay husband' gave her. You won't feel nude even if you're naked wearing Kitty Poledancer.
  • No Panty Lines-- the sheer lip plumper will enhance any shade of lip color, or wear it alone for the pure joy of shiny satiny natural lips.
  • Worship Kate--an homage to icon and inspiration of Kate Moss. This shade is a great berry shimmer and has the ability to blend with anything. Just like Kate's style, it can mix and match as easily as it can stand alone.
Travel to and from New York City is included (thanks to CheapOAir), a stay at the hip Smyth hotel in Tribeca, drinking Lychee Martinis at the Smyth hotel bar, shopping trips to TopShop (Kate Moss' line is sold there) and Christian Louboutin, a tribute to the shades Worship Kate and Red Sole, as well as the Wonder Women portion of the Grand Prize: the power of an S Factor class and a burlesque lesson from the incredible Veronica Varlow to feel like a Kitty Poledancer and Love Your Thighs for real! There's more surprises as well... Here's hoping that I win or if you win you take me along as your friend!

The rules are simple enough, but how would I be able to convey my love of the amazing product while combining elements of my personality and creativity--and still make it "Viral-able", let alone chose a single shade out of the six to identify with. Now the challenge began to create a winning entry.

Coming soon, producing the Kiss & Tell contest entries for all 6 shades!

Saturday, August 8, 2009

I'm obsessed with Huge Lips & RED SOLE!

Being obsessed with Huge Lips!

My hubby is a little jealous. I've fallen in love and it has become a bit of a problem. You see, I am "in love" with a lip gloss. Actually, it's more than a lip gloss - it is a lip plumper infused with Hoodia, the appetite suppressant. I am in love with "Huge Lips, Skinny Hips" from Purple Lab NYC. I know that you might think that I'm crazy, but my life truly has changed since just before the product hit the stores.

As an LA Lady, I like to be on the forefront of style and trends, especially affordable ones like lip glosses (each shade is only $20) but this was different because this lip gloss was not only going to have lip plumper (full gorgeous lips, here we come) but would also contain the ingredient Hoodia. How perfect--a lip gloss that would help keep the tray passed munchies away! Created by Purple Lab NYC, a company and product that was inspired by Karen Robinovitz (a Manhattan Fashionista who has been a style guru and role model to me since her days of 'topless journalism' writing for Marie Claire) the product "Huge Lips, Skinny Hips" was exactly the item my makeup bag and vanity needed.

Hearing about Huge Lips, Skinny Hips was too much to bear. I couldn't wait to get some on my lips a.s.a.p. --then the search began. Living on the West Coast, I was 'thisclose' to flying to Vegas for the weekend just to shop at Scoop. Then I befriended the various employees of the three closest Space.NK boutiques within Bloomingdale's. Covering the local bases, and even speaking with the regional manager who called me the minute she received an email with the shipping date. Once shipped it the Purple Lab NYC display came in but there was no lip plumper, yet... Two days later I got the call, I had been waiting for - it was 2:17pm when my phone rang and all the message said was "they are here." It was the familiar voice of Geoff at the Century City Bloomingdale's Space.NK counter. I knew what he meant. But as fate would have it, instead of jumping in my car and driving straight to Bloomie's, I had an appointment that could not be rescheduled. So I went to Bloomingdale's as soon as I could.

It was just after 6pm, when I approached the counter. First I saw the purple hand held mirror, and then there they were the first 6 shades of Purple Lab NYC's Huge Lips, Skinny Hips. I recognized the shape of the tube already as I had seen them repeatedly in various forms of media. As I got closer to the counter, I saw Geoff and he saw me. A smile grew on both of our faces--mine because of the impending glory and joy had finally reached a crescendo and Geoff's smile I assume was because he works on commission. Soon, I would be experiencing Huge Lips, Skinny Hips for myself!

As soon as I fingered the testers I was in love, I had fallen hard. I loved Worship Kate (a yummy berry shade with a slight shimmer) immediately and Kitty Poledancer was a close second. I have a cat (though I insist I am not a "cat person") and I love S Factor, which is the female empowering exercise/dance class that inspired the hue name. (In case you were wondering, Kate Moss adoration is how Karen came about the name for Worship Kate!) So after deciding which shades I was going to get that day, I had chosen three shades-- the aforementioned Worship Kate, Kitty Poledancer and No Panty Lines (everything that is awesome about HL, SH without color, a clear gloss to enhance any lip product.) I told Geoff which shades to get me and he said that I got the last Worship Kate. WHAT?! You just called me, he said he had a list and I was lucky to get what I wanted. I knew he was right.

Something amazing happened to me when I put on the lip plumper. First thing, I noticed was the stinging sensation that comes with most plumpers was MIA, no stinging (or buzzing for that matter)--this was cool. Then I realized it was cool, actually the gloss seemed to cool my lips. I finally had a cool pout. The smell and taste were delish. The real test of course came later - when I kissed my husband, he said "Yum!" Unlike most lip sticks or glosses, with Huge Lips, Skinny Hips I didn't leave his lips sticky.

In the next two days, I went back to Bloomingdale's twice. Once I had to have Lychee Martini, a coral shade that would go perfect with the outfit I had planned for the weekend. The next time I returned, I accepted my fate and bought Love Your Thighs, a super rich luxurious shade of pink and the knock 'em dead perfect shade of red RED SOLE. Saving the best for last? I have worn my RED SOLE all summer long and usually red glosses make my lips look gloppy and gross. Purple Lab NYC's RED SOLE is bright, bold and bodacious! Like I said, I'm in love with (more than) a lip gloss.

Please click the link below and take a minute to vote for me in Purple Lab NYC's Kiss and Tell contest. (more on the incredible contest soon!)

Brickfish Social Media: Bold Bright & Bodacious

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Friday, August 7, 2009

Getting Diagnosed.

Getting Diagnosed with Lupus...

I don't remember the date of how it all started but looking back I should have known that something was wrong with me. At 14, I was always tired, after school and it appeared as if I would bruise spontaneously. After what seemed like my 10th false Mono test, the doctors figured that I was depressed, so I was sent to a therapist who after finding me a "normal" 15 year old teenage girl thought my self-esteem would be improved by a nose job. (living in the San Fernando Valley, nose jobs were the answer to many teenagers low self-esteem) however my pre-operative bloodwork came back and my PTT count was abnormal. That's when the diagnostic fun began... the first blood test I was given was a blood time test by a newly certified phlembotomist who had never seen a patient not stop bleeding after 10 minutes, {I know because as a curious patient I asked her} as the staple mark on my forearm leaked blood for 10 minutes then 12... at 14 minutes she ran out of gauze to wipe the blood and called the doctor to ask what to do. Apparently after 8 minutes, she should have put pressure on my arm and stopped the bleeding.

Oh well, that was the beginning, I was tested for anemia, leukemia, cancer and Mono again and again. However, after months and months of waiting for the results of what it was that I had, I knew what I didn't...Lupus, the word to me, reminded me of the baseball movie Bad News Bears, and a runty kid with a perpetual runny nose... but it was finally something. Until it had a name, how could I begin to fight what it was that conquered my body. Now I knew what it was, it was Lupus. (This was before the days of the internet and webmd) So off to the library, we went my mother and I tried to find any books on the disease. The Sun is My Enemy was the only title available. So we checked it out and read the book and realized the outlook wasn't good.

That was years ago... thanks to the bad doctors (that led me to search out and find) the good doctors, the right drugs and a strong belief that as Shakti Gawain says Everything is Unfolding Perfectly.

Be Well. Be Strong.

-originally posted on Facebook 5/24/09

Thursday, August 6, 2009

How I became LA Lupus Lady.

Wondering about how I became LA Lupus Lady?
It's a long story but getting diagnosed and living with a chronic illness usually is. I was diagnosed with Lupus at 15 after a long period of not knowing, finally having a disease with a name was a relief. Lupus aka Systemic Lupus Erythematosus or SLE was the name of what was wrecking havoc on my body.

The symptoms were sporadic and strange, I bruised easily and could not sleep through the night. I had night sweats and chills, my joints ached and my skin hurt. that was the just the start of my flare. eventually I was overmedicated by the wrong doctor. Hindsight is 20/20 & I learned the hard way - by suffering the side effects of the medicine I was unable to know what was the Lupus and what was the prescription meant to help. then I found the right doctor! The doctor who would how to talk to me like the young woman I was, one who was full of questions. he answered each one fully and reduced my dosage of meds as safely as he could as quickly as he could.

The first Lupus flare was under control and eventually I was off the medication completely. Living with Lupus is a life knowing more about the science & workings of the immune system than any non-medical professional should. I take each day as it comes. I know what it is like to be too tired to get dressed. I know what it is to be so dehydrated that you need to go to the ER for an IV of fluids. I became a perfect patient. I had an awareness of my body and knew immediately when something was "not right" I credit the disease my Lupus with giving me the gift of heightened awareness. An awareness that has helped me manage to live with Lupus rather than die from it.

years later -and I know I am skipping a lot but this is just getting started.- I became an active member of Lupus LA's Young Professional Group. Through my activities within Lupus LA, I learned about the Lupus Research Institute's Capitol Hill Advocacy Day. I wanted to go lobby members of Congress about funding Lupus Research and educating medical professionals. So I begged my husband to let me use his frequent flyer miles and I booked the trip. Before I headed to Washington though I went to New Jersey to visit my friend and his growing children.

So I travelled all the way to New Jersey to become LA Lupus Lady. My friend's 12 year old son is on YouTube and explained to me in no uncertain terms that I was going to shoot my advocacy day on Capitol Hill and post it online. /but first I needed a name that would capture who I was and what i was going to be on YouTube.

I'm from LA and I have Lupus and I am female, and Lady has a sense of grace to it. LA Lupus Lady was born. I am by no means Steven Spielberg, but I feel that sharing my views of life with Lupus online via YouTube is a powerful tool of representing me as I am, a woman in LA living with Lupus while raising Lupus awareness. www.youtube.com/user/LALupusLady to see my YouTube channel.

More Soon!