Entries in State of Now (3)


Accomplishing "Lupus Style" in 2013

How am I supposed to think about plans for 2013, when I am not done with November's National Health Blog Post Month #NHBPM for WEGO Health yet?  If there is anything that John Lennon and Systemic Lupus Erythematosus (SLE) have taught me it is that "Life is what happens while you are making other plans" yet I am making plans.  Looking forward is an important part of my life with lupus.  I look forward and plan.  I know now that in January, Lady Gaga is bringing her Born This Way Ball to Staples Center and I am a "Heavy Metal LOVER" Monster!  I have already started working out so I can dance all night.  I hope that exercise classes (with Richard Simmons, @TheWeightSaint) will help build up my stamina.  Dancing around the living room listening to Lady Gaga's songs so I can sing every word along with her.  (I love the "living room", don't you? The idea of room that is just for living.)

The one thing is that I would continue from 2012 into 2013 is to lead my team "Lupus Awareness is Fun!" as we walk at MetLife Stadium in New Jersey and along the beach in Santa Monica, California and in 2013, I want to lead a team of walkers in New York City!  I wanted to lead three walk teams to support the Alliance for Lupus Research "Walk with Us to Cure Lupus" in 2012, but I only led two.  I want to do more for the lupus community and in 2013, I will accomplish my goals.  Because like the Alliance for Lupus Research say "Together, we can cure lupus."  I may not be a researcher or scientist but as an advocate for awareness and research maybe the contributions of someone who supports the "Lupus Awareness is Fun!" team will be the crucial funding to discover the next innovative therapy.  Since I don't know whose dollar is going to be the one, the crucial one dollar that helps take lupus research one step closer to a cure.  I walk and if I walk in three cities in 2013, I will walk in four cities in 2014. Until there is a cure for lupus, I will walk.

Pictured here with Tiffany Peterson on the field at MetLife Stadium (New Jersey) in May!


On stage at the State of Now 2012 "Lupus Chat, Lupus Style." at the 92nd Street Y, New York in June.

Kicking it with the Los Angeles "Lupus Awareness is Fun!" team in Santa Monica, California in November! Wearing my purple boots, tights, sequin skirt, and the cape attached to my purple jacket!  You might think that I am addicted to sharing that 100% of all donations to the Alliance for Lupus Research directly fund Lupus Research but until there is a cure, there is the ALR.

One step at a time for the Alliance for Lupus Research. Other plans for 2013 that should have "passion coliision" warning signs... I booked lunch reservations at Joanne's Trattoria for World Lupus Day, I am so glad that Travis is looking forward to hosting us again.  I hope that I will be chosen by @jeffpulver to share (speak) at the State of Now 2013 on stage at the 92nd Street Y in June.  I can't wait for these and other chances to share my story at conferences, online and on TV.

Now it is time to take a breath and a drink of water, ramping up to share how my "passions will collide" in 2013 is fun and making me thirsty!


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...


a few more than 140 words...

This is it, the state of now is here, and I am packing my suitcase as I embark on the adventure of a lifetime.  Tonight, I will be flying Virgin America across the country to New York City.  The anticipation has been building and the pace has ramped up... now is the time to pack for my #LupusStyle #140conf adventure.  I feel like the Virgin America slogan "the world is my runway..." and the stage of the 92nd Street Y connects me to the world. 

Rushing around, means there is no time for me to write with the eloquence I had hoped but I promise you this my passion and enthusiasm for connecting is ready.  Are you?  Follow along.  You will learn more about "Lupus Style" over the next week if you watch my Twitter feed... remember that "Lupus Awareness is fun." I hope you connect with me and my journey.

Link to the NYC 2012 "State of Now"

Link to the NYC 2012 "State of Now" Speakers

Link to the NYC 2012 "State of Now" conference schedule