Entries in lupus (127)


Back to the past or look into the future?

I can't believe how much trouble I am having "dealing" with the prompts from WEGO Health this year.  I just don't want to look bad at what I was like at 15 before I got symptoms and then sick.  It is too depressing and sad.  Instead I am looking towards the future.  

Next week, TEDMED and "Great Challenges Day"

Next month, May is "Lupus Awareness Month" celebrating World Lupus Day in NYC and Walking at MetLife at the Alliance for Lupus Research Walk with Us to Cure Lupus event!

In June I'll be sharing at the #140You (formerly the #140conf aka "State of Now") a conference in New York City focusing on "Health, Wellness, Fitness and Food" more Big Apple fun!

Sometimes brevity is a good thing.  

Day 12... this Health Activist ( and lupus patient) is too busy being a Health Activist to post about being a Health Activist.  What a tremendous and awesome challenge to be dealing with.


How many calendars is enough?

I am honored to be invited to be a participant in the 2013 TEDMED "Great Challenges Day" and I am striving to create 30 posts in 30 days for WEGO Health's Health Activist Writer's Month Challenge.  I feel like a true #Gladiator this month.  I am #ScandalObsessed I admit it.  The best "virtual" medicine for me often comes in the form of a tweet or retweet from a cast member.

Tonight after a busy day of finalizing my TEDMED plans, I put "California Years" (a Jill Sobule CD.) on full blast and somehow made it to Slimmons Studio where I worked out with Richard Simmons in Beverly Hills.  Happily exhausted, I grabbed a greek yogurt for dinner and waited patiently (aka "watched the rerun of a Grey's Anatomy episode") for the repeat of "Scandal" to start.  

I know why I am going to TEDMED and "Great Challenges Day" but it will be fun to explore my favorite scandalous locations while I'm enjoying our Capitol City.  I can't wait to toast to TEDMED and "Great Challenges" once I'm in the beltway.  But tonight, instead of writing this post, I was caught up on my Twitter timeline, while creating the vision for the "Men of Scandal" calendar... that's when I realized I would want and covet more than one calendar.  The Men of Scandal calendar would be where I kept my workout and fitness schedule.  The Scandal Datebook with tips by @scandalmakeup would become my new desk calendar (apologies to Moleskine!) and the Lady Fixers "Girl Gladiators" calendar would be where I note and schedule all of my social media chat and health care advocacy activities.  I know Shonda Rhimes may be too busy writing and producing my obsession to design the calendars I desire... but ABC Marketing should get on this.

(Late night Day 11 post for HAWMC!)


Annie shot me! 

The top picture is of me and the photographer Annie Leibovitz.  The photograph on the bottom was taken by Annie Leibovitz. 

These pictures represent a glorious time of my life, I was visiting New York City, one of my favorite places in the world, when I read about an Annie Leibovitz book signing.  I changed my plans to attend, little did I know that I would be "shot" by one the most prolific photographers of our time.    Without question, two of my favorite pictures taken of me.



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.


"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 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.