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Tuesday
Nov102009

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
Nov092009


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.

Monday
Nov092009

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.

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.

Wednesday
Sep162009

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.

Monday
Sep142009

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.