Entries in Lupus Style (19)


The impact of "The Fashionista Files" on "Lupus Style"

Front Cover"The Fashionista Files: Adventures in Four-Inch Heels and Faux Pas" by Karen Robinovitz and Melissa De La Cruz probably is not the kind of book that WEGO Health was expecting me (or any health blogger) to write about when they suggested writing a book report for Day 13 of National Health Blog Post Month but this book is perfect choice for me to reflect about the beginning of "Lupus Style". 

Being a "fashionista" is much like living with a chronic illness.  No one seems to understand you and what you are thinking when you make seemingly outlandish lifestyle choices because you"have" to.  I think it was two ideas from the book  that impacted me most.  First, it didn't matter whether she wears "K-mart or Chanel", the fashionista is comfortable in her skin.  Then, a fashionista accepts and loves her body -- no matter what the size, a girl should "love her thighs".   Those ideas sparked me to think about "Lupus Style" and discovering that despite life with lupus, I am able to celebrate and accentuate the positive.

When living with lupus, each patient is unique like a snowflake -- or a fashionista who too can be a chameleon boho chic one day, urban hipster the next.  I couldn't help but relate to the fashionista horror stories of feeling like an outcast when dressed in a "don't" to the days when I was first diagnosed.  The tales of learning self-acceptance and confidence were not lost on me and helped me as I discovered my "flair" and that's when I started becoming active on Social Media in the lupus community.

The journey and joy of the book continued as I became a "Brand Ambassador" for Karen's cosmetics brand Purple Lab and came up with the name for "Pearlesque Show" a primer w/ crushed pearls inside.  When I first heard that my idea sparked with Karen, I couldn't contain my joy.  One of my bucket list items was coming true!  As a little girl, I thought it would be the best job in the world to name nail polish and lip gloss shades.  Here I was, thanks to Twitter and Facebook, helping Karen and Purple Lab create a new product.  It was "beyond" description.

By learning from the best--both Karen and Melissa-- I have become comfortable in my skin and my style of sharing that "Lupus Awareness is fun, but lupus is not."  Who knows where I would be right now if I hadn't read "The Fashionista Files" and "How to Become Famous in Two Weeks or Less".  Thankfully, we will never know!

Follow @KarenRobinovitz and @MelissadelaCruz and the hashtag #LupusStyle respectively. 

 Front Cover  


Chatting w/ #FriendsofRicki

If you missed the "Friends of Ricki" chat when I was the guest as "Friend of the Week" here is a recap for you.


"Lupus Style" with Karen Kane

The concept of "Lupus Style" is about how you feel, not what you are wearing.  Whether you are dressed up or dressed down, the concept  of "Lupus Style" is one that embraces being comfortable and confident no matter how your body feels. 

Once I realized that I would be talking about "Lupus Style" at the #140conf12 conference in New York City, I knew that looking good would give me the confidence to share how the Lupus community finds and shares meaning in the "State of Now".  I had to feel comfortable while looking professional, not at all, like a woman who suffers and thrives despite living with Lupus.

In May 2011  I was a proud Brand Ambassador for Karen Kane (on Twitter at @Karen_Kane and online at at the #Fashion140 held at Lincoln Center's Alice Tully Hall.  When the "Lupus Chat, Lupus Style at the #140conf12" was confirmed,  I sent an email and asked if they would be interested in providing the wardrobe for Tiffany and me  when we spoke on stage at the 92nd Street Y.  Pleasantly surprised, and beyond excited, one can only  imagine the joy I had telling Tiffany that Karen Kane would be generously "dressing" both of us for the "State of Now"  VIP cocktail party and on June 19th, the day we were speaking.

I chose a LBD (Little Black Dress!), the Karen Kane "Tucked Front Dress" for the cocktail party-- a classic.  The gathered waist of the dress's design accentuated my curves.  Like "Lupus Style" itself, the dress accentuated the positive.

Tiffany selected a fantastic "Stretch Linen Pencil" skirt in Tan, a "Sleeveless Ruffle Top" in Earth and paired it with the "Banded Drape Jacket"in  Black and Off White that complimented her tiny figure.  The outfit worked and Tiffany rocked it.

The day of the conference we both chose to wear bold, bright colors that popped against black.  I wore the Karen Kane Split Neck Shift  dress in Black with the Shirred Sleeve Blazer in Tile-Blue.  Tiffany wore the Color Block Tuck Dress, in Fuchsia and Black.  Here we are in our fabulous Karen Kane on June 19th at the 92nd Street Y!

 Tiffany and I celebrating how the Lupus community finds and share meaning (and style!) at the "State of Now" proudly wearing our Karen Kane outfits.

To answer the question "Who are you wearing?" with "Karen Kane."  made me smile, and one of my favorite phrases is that "Smiles are contagious, Lupus is not." 


Moments of Serendipity.

One month ago, I had spoke, along with Tiffany Peterson (@TiffanyAndLupus on Twitter) at #140conf12,  about how we find and share meaning in the "State of Now" within the Lupus community.  Our talk was titled "Lupus Chat, Lupus Style at the #140conf12--or ,for those who tweet, "#LupusChat #LupusStyle at the #140conf12 . ( The reason these posts about my NYC conference experience aren't as timely as I would have liked is because I pushed my body to the limit and then Lupus made me pay for it; more on that later.)

The "State of Now" conference engagement starts long before the actual speakers take the stage at the 92nd Street Y in June. First things first: I submitted a panel proposal to Jeff Pulver (who created and curates the "State of Now" (aka: #140conf)) earlier this year.  After waiting for what seemed like forever--but in reality was only a few weeks-- to hear back, I finally got the confirmation that the Lupus panel had been chosen to speak at the conference.  Excitedly, I let the other panelists know that we had been selected. With a few months to plan, I knew that I wanted the panel to share by example how the Lupus community supports one another.

That's when plans were made for me to travel across the country to be in New York City for World Lupus Day on May 10th.  Two days later, the National Alliance for Lupus Research Walk with Us to Cure Lupus event would be held in New Jersey.  Not just in New Jersey but at MetLife Stadium--the home of the New York Jets.  I asked the other panelists to join me and take a walk in New Jersey.    It was more than a month before the #140conf yet it was during my trip to NYC to celebrate "World Lupus Day" and the Alliance for Lupus Research Walk with Us to Cure Lupus that the panel changed. (Living with Lupus has taught me resilence and flexiblity!)  Tiffany and I were celebrating the fact that we were together; despite the chronic pain and challenges we face every day living with Lupus, we made a point of choosing to accentuate the positive and eliminate the negative.  

Many "moments" happened during the day, from receiving VIP seats and access at The Wendy Williams Show to our lunch at Joanne Trattoria (named after Lady Gaga's Aunt Joanne, who had died of Lupus) and later attending the "Collaboration for the Cure" reception honoring the researchers and Scientific Advisory Board of the ALR and even being taped about how the Alliance for Lupus Research is leading the way to promising advances in Lupus treatment.  It was late the night of May 10th, while relaxing in the hotel room at what we called the #LupieLoveSlumberParty and talking about the amazing moments of the day, that the panel changed.  After not replying to emails or DMs for over a month, the other panelist told us that she decided she would not be joining us on stage. Remembering the part of the day where we were talking about how we need to focus and "accentuate the positive and eliminate the negative", Tiffany consoled me with a hug and support.   Moving on...

Next, nerves set in.  I was nervous--not nervous about what are we going to share but what were we  going to wear?  Thankfully, Karen Kane chose to sponsor the "Lupus Ladies" by providing us with two outfits each, one to wear to the cocktail party and another to wear on stage at the conference.


Tiffany (@TiffanyAndLupus) looking fabulous in Karen Kane (We love @Karen_Kane !)

The VIP/Cocktail Party for the #140conf12 held at Brick NYC was unbelievable. The avatars I had come to know as part of the community were alive.  If you know Jeff Pulver (@JeffPulver) one of his favorite sayings is that "hugs are better than handshakes" -- hugs were plentiful that night. I reconnected with familiar faces and friends like @GeoGeller and @AlanWeinkrantz while meeting new friends like Joe Cheray @wildheart4vr , Jodi Sonoda @KarmicEvolution and Tiffany LaBanca @TiffanyLaBanca - you should know now that Tiffany LaBanca and Tiffany Peterson each had not met another Tiffany until that night. Have you ever had the feeling that even though I just me this person, our lives are now and forever intertwined? That is what happened as Tiffany, Tiffany and I met.  We were starting to form a lifelong friendship, right then and there.  Over pizza, in the warmth of the overheated restaurant, our connections were building and taking root.  Jeff Pulver has an incredible way of changing lives; putting people in the same room and letting serendipity take over.

I had to get some air, so I went outside. On the sidewalk in front of Brick NYC I saw her. I knew she would be there, but in the #140conf community and to me Becky McCray is an inspiration. When I saw her (@BeckyMcCray on Twitter) I started swearing "You are Becky F8cking McCray!" I kept saying it over and over; I couldn't believe that I was in NYC and Becky McCray was here, too! The moments and connection that occur in person can never be fully replaced by Social Media.  No matter how good a "virtual hug" feels, one that has an actual squeeze involved is so much better.   As the cocktail party wound down and the car taking most everyone back to their hotel (in Queens of all places), It was time to find Tiffany (Peterson) and make our way back to the Hudson Hotel (@HudsonNYC), my New York City home away from home.) for another #LupieLoveSlumberParty.

That was the night before the #140conf12, Monday night, June 18th...


Me, My Niece and Lady Gaga's Aunt Joanne.

FYI: I am more than "LA Lupus Lady" sometimes I am "Auntie Panda" here is a post I wrote for Savvy Auntie about how my niece and I celebrated her 14th Birthday!

Click the link to read all about it...

Happy Auntie's Day!