Entries in SLE (11)


Help me create and share the "Joys of Lupus"

One of my proudest moments of being "LA Lupus Lady" came when I posted the final version of the "This is what Lupus looks like" ~ I hope everyone has had a chance to watch the video that I had the idea for and that together we (the Lupus community!) made and called "This is what Lupus looks like"!

I am already planning the next video project.  Are you ready..?  The next video is going to be called "The Joys of Lupus" I am asking for you and every "Lupie" you know to submit any three pictures that you want to... ~ share pictures that are beautiful and joyful or depressing and ironic as long as you feel the pictures show the "Joys of Lupus" 

1) email pictures to me at 
2) subject line "Joy of Lupus" 
3) please include how you would like to be credited in the video at some point in the body of the email in ALL CAPS
4) submit by January 30, 2011
5) by submitting your pictures to mean, you are allowing me to put them into a YouTube video that will posted online and available for the entire world to see. (you know this already...)

Thank you for supporting this and helping me prove that Lupus Awareness is fun!  Now, all you have to do is smile at a camera and say "Lupus!"


"This is what Lupus looks like"

I first heard Toni Braxton say the words "This is what Lupus looks like" at the 2010 Lupus LA Bag Ladies Luncheon, I was inspired to show the world the living with Lupus isn't pretty but it is beautiful.  I asked the Lupus community on Facebook and Twitter to share pictures.  Some "Lupies" asked me what kind of pictures did I want? I did not have any guidelines.  I just said " show me what you want to.  I am proud of this video and of everyone who contributed and shared with me, so that together we could show the world ~~ "This is what Lupus looks like"


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.


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.


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