Entries in Lupus Awareness (6)


The #LHandSign Lupus Awareness Flash Mob Freeze and me.

The #LHandSign Lupus Awareness Flash Mob Freeze in LA is going viral and you can help share.  But here is a brief inside look from my point of view.

Mat asks me to get involved and help.  I say yes.  Together, we text back and forth and arrange to do a location scout.  Once in Hollywood, we find the perfect pre-freeze place to meet and then Mat starts snapping pictures.  I hear snippets of "the song" and get excited.


Next thing, I know I am in WDC's radio studio and on the air sharing the #LHandSign Lupus Awareness Flash Mob Freeze with his radio listeners.  It's all a blur because I was off to Washington, DC to go to TEDMED!

Here's the YouTube of me on the WDC radio show...

Then on Sunday, April 28th shortly after 11AM the Lupus community of Southern California gathered for the Lupus Cloud Meet Up and at NOON for three powerful minutes in front of The Chinese Theater in Hollywood, there was silence as the #LHandSign Lupus Awareness Flash Mob Freeze happened and then Mat Simpkins, of and creator of the #LHandSign blew the whistle and we hugged and then made our way to California Pizza Kitchen for the "after party" benefitting The Purple Rose Foundation.

Thanks to everyone who came out in LA and to you who I know by now is thinking I want to "Put my L up!" so go ahead and take a picture posing with the #LHandSign and share it online.  Instagram, Twitter or Facebook, show your support for Lupus Awareness.

Watch the video... and "put your L's up!"



Champion for Lupus Awareness!

Toni Braxton has taught me that when living with Lupus "there are good days and bad days".  Much like the day that Toni Braxton told the world that she had lupus,  I feel that today was "a good day!"

Together with Mat Simpkins we scouted the Hollywood location for the "L Hand Sign Lupus Awareness Flash Mob Freeze" to be held on April 28th! Then, after a nap, I registered for TEDMED 2013!  I've been invited to attend TEDMED on April 19th for "Great Challenges Day" as a Social Media Narrator.  I am beyond honored and excited by this opportunity.  

Before I look forward... let me take a step back and share a "Lupus Awareness" community YouTube project that was inspired by Toni Braxton's empowering quote "This is what lupus looks like".   The progress and forward strides the Lupus community are making together never cease to overwhelm me.  Mat said it best today as we drove across Los Angeles:  "Teamwork makes the dream work."  I am proud to continue my journey and share that "Lupus Awareness is fun!"

Please pardon my brevity, but as anyone living with lupus will tell you sometimes you have to make choices and prioritize.  Happily, I am not neglecting the WEGO Health "30 posts in 30 days" challenge, but I am living up to my end as a "healthy" Health Activist by being honest with you and with myself about my physical limits before I reach the point of flare.  That is what living with "Lupus Style" is after all - discovering the flair.  The teams have played, March Madness became the Final Four (now the Final Two) and though it is almost midnight East Coast Time I feel like a true champion for Lupus Awareness.


Guest Post: "I love someone with Lupus."

I'm the guy sometimes referred to as "Hubby"; maybe you've seen me mentioned once or twice in @LAlupusLady's Twitter timeline.  I have the honor of writing a Guest Post in honor of Lupus Awareness Month and my wife, the "super hero" you know as "LA Lupus Lady."  I am writing this post because "I love someone with Lupus."

Lupus has been a part of my life for almost nine years; the anniversary of our first date is coming up.  One night not long after that amazing night, while enjoying one of the perks of our new relationship -- my satellite TV--, Amanda seemed a bit distant.  She looked at me with pouty eyes and said, " I have something to tell you -- I have lupus."  My heart skipped a beat.  What little I knew about it at the time wasn't very good--a few years earlier, a business colleague died from it.  She then told me a bit more about her specific case.  It was mild.  She was diagnosed in her teens and she had the best possible medical care and doctors one could hope for.  She then said for the first time a phrase that has become a life mantra -- "I may have Lupus, but Lupus doesn't have me!"  She knew that she has dropped a bombshell on me, so as she left that night she looked at me sadly and said "If you don't want to continue seeing me, I will understand, but let me know."

She had encouraged me to go online to learn more.  After she went home, I read all I could find for hours.  I learned more about the symptoms, the flares, but most of all, the fact that Lupus can be fought, if only for one day at a time.  I read some patient testimonials on WebMD and I saw their spirit and they mirrored hers.  I knew at that moment that I was blessed to have Lupus in my life -- for in Amanda I saw true perseverance, strength and resillience.  It gave perspective to my own life struggles, where the stakes were far less dramatic.  It helped make me realize that not only was Amanda the most uniquely intelligent, savvy and beautiful woman i had ever known, but those qualities came in large part out of her indomitable determination to not let Lupus have her.  Instead, we have each other.

In our seven and half years of marriage, I've shared many passions with Amanda -- for example, against her instincts, she not only became a baseball fan but indeed got to share my last-ever game at my boyhood shrine, Shea Stadium, the former home of the New York Mets.

None of the journeys through the worlds that I have invited her into can compare to the daily journey of the world of living with Lupus.  The fact that she has become so prolific in sharing her experience, strength and hope with so many others make me exceptionally proud and love her that much more.  I am glad that you, dear reader, have come on board as well.  

Here's to health and happiness, yours and ours.  


aka Mr. @LAlupusLady


Lupus Awareness is Fun!

Anyone who follows me on Twitter knows what my tagline is.  If you've been reading my posts for WEGO Health's Health Activist Writer's Month Challenge you know what it is.  My tagline captures my passion and purpose simply put "Lupus Awareness is Fun!"

On Twitter, I will use the hashtag of my tagline #LupusAwarenessisFun.  The truth is that "Lupus Awareness is fun, but living with Lupus is not"  I know and have lived with Lupus for long enough to discover the (many) joys of Lupus.  Sharing my story and talking about Lupus is not as chic or fabulous as talking about Fashion and the latest color for Spring/Summer but when I share that "Lupus Awareness is Fun" I feel that my attitude will encourage positive sharing and spark a conversation about Lupus, funding Lupus Research and supporting the Lupus community.

"Lupus Awareness is Fun!"  I will be sharing my tagline on the 140 Character Conference stage as part of the "Return of the Lupus Ladies" panel on June 20th at the 92nd Street Y! If you live in or around New York City, I hope to see you there.  Save money and get your tickets soon.  "Early Bird" ticket pricing ends May 4th.  Make your plans to be a part of the #140conf community.  The #LupusLadies are @bydls Christine Miserandino and @TiffanyAndLupus Tiffany Peterson.  See why I feel that "Lupus Awareness is Fun" and how the Lupus community finds and shares meaning in the State of Now!!/search/%23LupusAwarenessisFun

Thank you for reading about my tagline and I hope that together we can share that "Lupus Awareness is Fun!"


Lupus Awareness is Fun in New York City!

While I am in New York City next week, I will combining my passion and purpose in every thing I do while I am in Manhattan.  Whether I am speaking/moderating the "Lupus Ladies of Twitter" panel at the 140 Characters Conference on June 16th (immediately following @DeepakChopra), toasting with cocktails at the Hudson Hotel or encouraging you to #GetInOnIt with me and the @Alliance4Lupus ~ my goal is to share that Lupus Awareness is Fun, because it is important.  

The highlight "Lupus Awareness is Fun in NYC" activity will be on Saturday, June 18th from 1-3PM where I share with the support of the Hudson Hotel.  Goodie Bags support donated by Hylunia Skin Care, Vita Coco, Coco Mama Foods and SARK!  Information provided by the Alliance for Lupus Research.

 Lupus Awareness is Fun in NYC! Join me at the Hudson Hotel!