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Wednesday
Apr102013

Cat-a-tonic!

From the magic and movement with Richy Jackson and The Haus dancers to working out and sweating with Richard Simmons, I have committed to reaching beyond my comfort zone this month.  Reaching beyond the preconceived limits of what I thought is possible.  Before I reach beyond, let me share where I find comfort and relief from the stress and tension of living with lupus.  My comfort zone tends to be located wherever my cat is.  (At the time, my fur baby is cuddled in a ball by my feet.)  I don't think of or see myself as a "cat lady", in fact I grew up as a "dog person" but now when I think of my comfort zone and favorite method of relaxing there is no place I'd rather be than cozying up to and with my tuxedo cat, Rex.

Today's writing prompt for the WEGO Health "Health Activist Writer's Month Challenge" was to share as a parent what do I hope I'm doing right.  Well, I am not a parent.  Thanks to lupus, I am unable to conceive my own children.  Again, thanks to lupus when my husband and I went to explore adoption, we learned that birth moms usually want the adoptive moms to be healthy and wealthy, the ones we met didn't want to give their babies to someone who lives with a chronic illness.  Thankfully, the West Los Angeles Animal Shelter isn't so stringent in screening prospective "rescue" families.  I am a "cat mom" and I hope that I'm doing it right.  Aside from the obvious needs of fresh food and water, I hope that Rex knows how much I love him.

When I am suffering and in pain, Rex will cuddle beside me.  When I get up and dance to Lady Gaga's powerful music, Rex will watch me dance.  During this month of facing challenges head on, Rex offers his support with his soft purrs.  I am lucky to have Rex in my life.  He offers his unique form of "cat therapy" by looking up at you with his big eyes and vocalizations.  When I need some TLC, my Tender Loving Cat is there.  Rex is an amazing "Cat-a-tonic" and he soothes me and ease the pain and tension of being someone who lives with lupus.

I know that circumstances prevent some people from having pets, but if you can.  I would suggest that you adopt/rescue a pet from your local animal shelter.  Rex is one of the best assets I have in fighting off the helpless, hopeless feeling that can envelope me as a 45 year old woman who will never have anyone call out "Mommy" - I swear sometimes the sound of Rex's meow sounds like he is calling out out "Mom" I know how that must seem... so may be I am a "cat lady" after all.

Time for a treat.

Monday
Apr082013

"The only change is that everything is always changing."

Last night at LA's "DANCE DOWN: Movement and Magic From Inside The Haus" inside the dance studio at Live Arts LA.  Richard jackson said "The only change is that everything is always changing." While Richy https://twitter.com/richysquirrel was referring to dancing with Lady Gaga and being part of "The Haus" he could have easily been talking about life with lupus.  At one point, during his empowering talk, Richy said the dancers often called it the "Gaga Challenge" leading me to this post... 

As a young girl, my mom took me to see (make that experience) "A Chorus Line" at The Shubert Theater.  I had taken ballet and tap classes, it was obvious that though I loved the music and the mirror that I was not the shining star but I loved it.  The line that stuck with me from that show "All I ever wanted was the chance to dance."  Thanks to Richy and "Dance Down" I lived my dream.  I never thought I would... recently I celebrated the 30th anniversary of my lupus diagnosis.  I will never be a professional dancer but last night I was able to escape the realities of my lupus life and experience "Movement and Magic" 

I wore purple from head to toe, proud to reflect my "Lupus Style" amongst a sea of black clad dancers.

The fact that "Dance Down" was held the night before I had to take a Chest CT helped me.  Richy, Lady Gaga and The Haus usually bring me joy.  But last night, was an up close and personal experience unlike any "Ball" could ever be.  Just for a moment, actually closer to 4 hours, Richy shared a glimpse into his creative life and journey.  He opened up about the real life of a dancer and I was able to forget that my new doctor wants more tests.  Lupus, even after 30 years, is always changing within me.  Just when I think that I know how to live with lupus, there is a new twist thrown my way.  While I won't know for a few days what the results of the Chest CT I took this afternoon are.  I do know that dancing to the choreography of Richard Jackson with The Haus and "DANCE DOWN" LA dancers took me to another place, literally "moving" me.

Richy taught us choreography but he reminded me to never give up and stay true to my passion.

"Paws Up!" with Richy!

After class with Victor @kidperu Rojas.

A trio of dancers, is that me?

proudly posing with the #LHandSign w/ @IamKevinFrey

Purple is the color of royalty... and lupus awareness.  My regal pose needs some work.

Showing strength together with @AsielHardison

"Lupus Awareness is Fun!" and while I may never experience the GAGA CHALLENGE I am happy to participate in WEGO Health's 2013 Health Activist Writer's Month Challenge especially since HAWMC is forcing/encouraging me to share the happiness, stress, joy, frustration and anxiety of April 2013 with you here. 

Sunday
Apr072013

Get Up and Keep On Moving!

"To dance is to be out of yourself. Larger, more beautiful, more powerful.  This is power, it is glory on earth and it is yours for the taking." Agnes de Mille

I love to dance.  I am not particularly good, but I enjoy the movement and magic that I feel when I dance.  In a few short hours... I will be dancing.  Not just dancing but experiencing Movement and Magic at "Dance Down" a workshop led by Richard @RichySquirrel Jackson!  He is one of the most prolific choreographers in the world and today I will be getting inspired and learning from him and other members of the Haus of Gaga!

https://www.facebook.com/photo.php?fbid=481161711948958&set=pb.244522572279541.-2207520000.1365373055&type=3&theater

While I am not following the WEGO Health "Health Activist Writer's Month Challenge" prompts, I am living up to the task of being a Health Activist who challenges the boundaries I have imposed on myself.  There are still times when the voice in my head thinks I am "too old" "too fat" or "too Lupie" to try -- that's when my flair kicks in and says "Get Up and Keep on Moving"

  http://www.youtube.com/watch?v=bwMLYd6crQU

Tomorrow I will share all about the Magic of "Dance Down" until then "Keep Dancing!"

Saturday
Apr062013

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".  http://www.youtube.com/watch?v=PX0vS45ntsg&list=UUSeFWMKJBTB5yL9fEHyU9kg&index=8   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.

Friday
Apr052013

"Goal Keeping"

“If I could do anything as a Health Activist…” and had no constraints or limitations.  Here is where I toss out the "prompt" Why waste time or energy imagining what my life can't be?  When I can use the same time to create "vision boards" or meditate towards what my goals are and what I can do and be.  This life of mine may not be perfect but it is my "Lupus Style Experince" and I am thriving despite living with a chronic condition for over 30 years.

I would love to create and lead “Lupus Style Experience” workshops and travel around the country (make that world!) from big cities to small towns to share the “Lupus Experience” with people who normally would not be able to have access to the educational or wellness resources that a “Lupus Experience” would cover everything a lupus patients needs to know.   The workshop would start with a conversation about coping with the diagnosis and stages of illness (flare to remission to a flare to remission again) to living with lupus.  Stress management will be discussed as the group each receive a foot massage and pedicure.  Depending on the location of the “Lupus Experience” different exercise classes could be offered Yoga, Tai Chi and Low Impact Aerobics or Movement classes (aka No Pole Dancing), because those with Lupus Style like to strut their stuff.  The purpose and goal of the “Lupus Style Experience” would be to assist the lupus patients discover the beauty within them and their own ability to help manage this condition called lupus.  The “Lupus Style Experience” is more than a support group it will be start as a half-day workshop that concludes with nutrition awareness / cooking class and a shopping trip to the market.   The patients go home with more than information and painted toes, they each receive healthy groceries to make the recipes at home.  When I have the time and find the "angel investor" these prgorams could change the world one lupus patient at a time.  (Have you heard of The Butterfly Effect?)

Thinking about my goals as a Health Activist, if I could do anything it would be to share what I know to be true to as many people as possible.  That truth is “lupus awareness is fun but lupus is not.”  If there were no limitations, I would attend more Alliance for Lupus Research “Walk with Us to Cure Lupus” events and I would have a “Lupus Awareness is Fun!” team in every city.  I would participate and hope to speak at health conferences.   I would be able to speak and share my story of transforming from patient to patient/advocate to whoever would listen.  I want to continue to engage and connect within the lupus patient community.   Whether speaking to a member of Congress on Capitol Hill or tweeting a new “lupie” online, I feel blessed and appreciate the gifts of lupus.

At some point my goals for my Health Activism became my reality.  I am doing what I can as best as I can.  To that end I am challenging the actual constraints and limitations to live with  “Lupus Style”.  I am proud to share that I have been invited and will be participating at the 2013 TEDMED 2013 ‘Great Challenges Day” on April 19th in Washington, DC.   I am thinking big and living with flair, who knows what tomorrow will bring but I look forward to it.