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.

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.

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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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!

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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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

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!