Entries in lupus (127)


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!

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"

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


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.


"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.


Sharing is caring.

One of my favorite phrases is “Sharing is caring.”  That’s what this post (Day 4) for Health Activist Writer’s Month is all about sharing.  Sharing resources…  I am happy to share resources that have worked for me but much like the disease itself, lupus patients tend to find support and resources that fit them on their own.

If I was a newly diagnosed lupus patient (in the United States)… I would want to reach out to one of the big three organizations to help me get a better understanding of this chronic disease the doctor called “Lupus”  Since this is my list, I would suggest that you skip the orange and head over to the purple people.   There is no better place to start than with the Alliance for Lupus Research.

There are a number of support groups available to you, many local hospitals provide resources for those newly diagnosed with chronic illness.  You may or may not find your “comfort zone” immediately – keep searching.  Sometimes, the best support you will find is online.  Whether from one the many Lupus communities on Facebook (shameless promotion time) such as “Lupus Awareness is Fun” or “Friends Against Lupus” there are (thankfully) too many to count and with a little exploring the newly diagnosed “lupie” as Lupus patients call ourselves will be finding support and building friendship with her lupus “sisters” before she (90% of lupus patients are women, so most likely she.) will learn to spell Systemic Lupus Erythematosus.

After the “lupie” gets to know her new normal, she will find that many of her Facebook friends and support team have taken to blogging.  There is a lupus blog for every personality and I don’t want to neglect any of my friends, so when my suggestion would be to ask your new friends which blogs they like.  Next up, I would tell the new “lupie” to search #lupus on Twitter.  That is how my friend and “lupie sister” Tiffany found and met each other.

(Here is Tiffany @TiffanyAndLupus during a Skype session, support can come from anywhere!)

Once the “lupie” connect with a few patients, her desire to advocate and become an activist may take over that’s when I suggest hitting the big guns and connecting with the “Partnership with Patients” community on Facebook

“Partnership with Patients was created in response to Regina Holliday’s experience in attempting to participate in the Partnership for Patients kick-off meeting, a CMS-funded initiative. Regina experience can be read in her post Pecking Order.

This is a friendly group. We will be honest but kind. Please be considerate of others. Remember if you are here you are helping to build a better tomorrow. “

The best part about the Partnership with Patients is the PEN = Patient Engagement Network that @ReginaHolliday has created with “The Walking Gallery” when you go to health care conferences and want a conversation starter, simply wear one of Regina’s painted jackets and the communication flows.  Don’t worry if conferences aren’t for you.  You can become an advocate and activist from the comfort of your laptop.  I would share (and I do) that new patients find a health care chat and “lurk” then join in and you will find yourself welcomed into the health care community.

At this point, I would say welcome to the world of lupus patient advocacy.  If I can help guide you along the way, feel free to reach out and contact me.  May you “find the flair and avoid a flare” as you discover your “Lupus Style.”


Purple Flowers Blooming!

Wordless Wednesday ~ post a picture that symbolizes your condition and experiences.

These purple flowers have found a way to bloom despite the weeds, bugs and parasites that surround them.  These purple flowers are blossoming with beauty and reflecting that nature finds a way to succeed when it has determination and purpose.  My "Lupus Style" is like these flowers, it took a while to grow through the challenges but here I am now.  Day 3 of 2013's HAWMC!  Of course, I broke the rules and added words to "Wordless Wednesday"