Socialize
Monday
Nov262012

You like me... You really like me.

I am so happy... I just found out that I've been nominated for a WEGO Health Activist Award.  I've been nominated in the Best in Show: Facebook Award.  It is an honor to be recognized.  I feel like Sally Field when she won the Oscar.  I am proud and humbled by this recognition and also happen to be dancing around my living room.

Thank you so much! Now playing "Just Dance!" by Lady Gaga.
Monday
Nov262012

Empowering journeys...

Where would you go if you could go anywhere?  "If I could go anywhere."  The prompt for Day 27 is vague... it doesn't say anywhere in the world, then my answer would be somewhere in Europe like Paris, France or London, England; or exotic and far away like the Wolong National Nature Preserve in China, where I could get up close and personal with and learn about Panda Bears.  If I could go anywhere, I would go to a place without pain.  Does that place exist?  I would like to live there, in the "pain free" zone but instead I am going to think about places that do exist.  Places that would and could help me better manage and control my health issues and condition, thus improving my Quality of Life. 

An escape and life-changing journey is 90 minutes away from my home... if I could go anywhere.  I would fill my car with gas and drive South to check-in at La Costa Resort and participate in the Chopra Center's transforming program inspired by Deepak Chopra’s best-selling book Perfect Health. The weeklong program is a total mind-body healing experience.

"Perfect Health is offered exclusively at the Chopra Center, nestled on 400 coastal acres of La Costa Resort & Spa. This oasis of bliss and rejuvenation is an ideal setting, with guest rooms located just steps away from the Chopra Center. When you’re not enjoying healing therapies, meditations, or instructional sessions, you can luxuriate in the gorgeous spa area, sip tea in the breathtaking tropic gardens, and feel the caress of the fresh ocean breeze in the Mediterranean-style verandas. The Chopra Center has arranged preferred rates for our guests staying at La Costa.

In this beautiful, soothing environment, you will feel your stress and tension melt away as our highly trained team of physicians, certified educators, and healing arts masters help you restore your balance and address your personal health and life concerns.

The Perfect Health program is based on the principles of Ayurveda – a powerful natural healing system that originated in India 5,000 years ago. The Chopra Center has developed a modernized system of Ayurveda that blends its timeless wisdom with the most advanced insights of modern science." from the website: http://www.chopra.com/perfecthealth  

The lifetime benefits that one week at the Chopra Center could not be measured, the lasting impact would have a ripple-effect on my life.  I have had the priviledge of experiencing a few Ayruveda treatments over a weekend and know that the weeklong program will be memorable.

Home

If I could go anywhere North of Los Angeles... after a quick flight from LA, I would go to the Tiburon, California home of Shakti Gawain.  The flight takes less than a hour to get to San Francisco International Airport and a short ride across the Golden Gate Bridge would take me to experience a workshop with Shakti Gawain... in a perfect world I am pre-registered for the workshop happening in two months from now.  Marin County feels like a soothing blanket and my heart is comfortable when I am there.  Before heading directly to Tiburon, I'd stop in Sausalito and Mill Valley to pick up some essentials from my favorite local shops.  have you had Lovesticks?  Then relaxed and ready I would make my way to Shakti Gawain's house for

"It's a New Year! Workshop with Shakti, January 26, 2013

There are so many "New Year, New You" products, workshops and websites, how could we possibly fail in the New Year?! We had a laugh when we read that the average life span of a "New Year's Resolution" lasts only 10 - 14 days. And over 80% are abandoned by the end of January! We all have fallen prey to "in the new year I'm going to..." making heartfelt commitments in earnest only to find ourselves feeling defeated and resigned to continuing with our old ways.

We wanted to host a workshop where we would help you create what you want your life to be in this year, and every year, in a conscious and compassionate way. We will share techniques for creating awareness and making choices from a position of balance and integration. We will work with a psychospiritual body of work to explore shadow aspects within us (not bad, just unknown!) as well as internal voices which range from our inner guidance and intuition to judgmental or critical voices which breed fear and hold us back.

We will start the day with Shakti's powerful technique of Creative Visualization and weave different meditations and practices throughout the day. Weather permitting, we will get outside and access nature too.

Shakti and Gina Vucci  Co-lead this event, working with participants through teaching, facilitation, and interactive exercises, all in the intimate setting of Shakti's home. Set on the gorgeous waterfront of Tiburon, California, Shakti's home is nurturing and healing, surrounded by amazing views, further enriching your workshop experience. With two wise, compassionate and gifted teachers, it will be an abundant and inspiring day!  Included with the workshop, you will also receive a product of your choice, breakfast, and a wonderful lunch, prepared fresh with local and organic ingredients."  From http://www.shaktigawain.com/events

(A photo of the view from Tiburon, looking towards San Francisco. Amazing, isn't it?)  I have been to a few workshops led by Shakti Gawain and they were only a few hours long.  The locations were quaint bookstores not the warmth and coziness of her home.  "Everything is Unfolding Perfectly." has become one of the mantras of my life.  I feel that after a day at this workshop my 2013 would be off to a creatively empowered start with inspiration from Shakti and Gina.

There are other places I could go, but I wanted to share these two with you for WEGO Health's National Health Blog Post Month.

 

Monday
Nov262012

Graphically speaking.

Word Cloud or Meme, sometimes the frustatration of living with chronic pain is devastating and as much as I strive to thrive the agony bothers me to the verge of defeat.  The edge is not a fun place with a beautiful view.  The edge is bleak, depressing and sad.  After 25 days of writing for WEGO Health's National Health Blog Post Month, today's post is a briefly exploration of me, graphically speaking. 

http://worditout.com/word-cloud/134613

Sometimes, I smile through the pain, not wanting to show my true feelings and other times I just want to yell... "Fog Off Lupus!"

written for Day 26 of National Health Blog Post Month "Make a chart/meme/poster and write about it."

Sunday
Nov252012

Evolving Goals... finding the flair.

Sometimes it is hard to find the "flair".  The truth is lupus hurts, I try to celebrate that "Lupus awareness is fun." but when friends are suffering and the daughter of a NBA hero dies at the young age of 22 it is hard to accentuate the positive.  I move forward and share my story.  I share my story and the stories of those who no longer can.  I share my story of what walking with a gold medalist is like.  I tell the story of what is was like to dine at "Joanne's" in New York City on World Lupus Day.  I shine and go on, because if I don't, who will?  I was silent for too many years, the time to shine a light on lupus awareness is now.  Scientists are on the verge on breakthroughs and crucial research support could lead to innovations that improve treatment and potentially cure lupus.

My goals as a patient have evolved from trying to "live with lupus" to striving and "thriving with lupus."

My goals as an advocate are constantly evolving.  I hope that in the next year, I am able to share my story to encourage more members of Congress to join and support the Congressional Lupus Caucus.  This year alone, my voice is responsible for getting Congressman Brad Sherman and Congresswoman Karen Bass in the caucus.  My goal now is to "ignite" the health care, social media and lupus communities to collaborate and partner in creating wellness through my participation with the Society for Participatory Medicine, Regina Holliday's "The Walking Gallery" and by speaking and sharing my story wherever and whenever I can whether at health conference, writing my blog or creating a YouTube video or on my favorite television show.

My goals and visions for the rest of 2012, looking forward to 2013 are too vast to include here but I will share my vision board as soon as it is ready...  I am always on a quest to find the "flair' while avoiding a flare.  That's my "Lupus Style."

written for Day 25 of WEGO Health's National Health Blog Post Month!

My goals as a woman 

Saturday
Nov242012

"Lupus Style!" Shonda, please "use lupus".

Laughter is good medicine, but lupus is no joke.  Still, I laugh hard and smile when lupus is used as the punchline in a TV comedy.  I will never forget and still chuckle at the rerun of "Seinfeld" when George Constanza says "Lupus? Is it Lupus?"  Everyone knows that "House" used lupus as a possible diagnosis many times; it was finally lupus in Episode 408, aptly titled "You Don't Want to Know".  Lupus was still used on the show and I am grateful because the show raised awareness.  Lupus is more common than cystic fibrosis, multiple sclerosis, muscular dystrophy, leukemia and cerebral palsy, but suffers more than any of these diseases from lack of awareness.  "Lupus Awareness is Fun!" so let's begin...

I would submit an idea to Shonda Rhimes to do an episode, or even better a story arc, featuring characters with lupus.  The question would be which show--after all, Shonda Rhimes is Executive Producer of three current ABC dramas.  The obvious choice would be to ask her to include lupus on "Grey's Anatomy".  While I know that "Grey's" has "used lupus" previously, I would suggest a few storyline options.  One idea has Dr. Christina Yang meeting a cardiac patient, a young black woman whose positive attitude and lupus diagnosis has encouraged her to create and participate actively in an online community (support group) of lupus patients.  When her online friends travel across the country to have an IRL "MeetUp for Amanda" (shameless plea for the lupus advocate/patient/activist to be named after me!), Christina's usually stoic demeanor is softened and she realizes that healing the heart can be done with more than a scalpel.  Or Bailey could have a lupus patient whose mother is not the "health proxy", as the patient has decided to elect a non-family member to make decisions in the event that she cannot.  The issue is that currently the patient is making EOL and QOL life choices that the parent and family disagree with and the lupus patient just wants to know that her wishes will be fulfilled if and when the time comes.  Another idea for "using lupus" could be that Meredith has a lupus patient who was on a trip to Seattle when the stress of travelling caused the patient to "flare" and there is difficulty attempting to get her patient records--it is a long holiday weekend or legal holiday.  When the patient hears of this, she pulls out her tablet and has her complete EMRs and other health apps online that have monitored her medications and lab results for the last two years.  All of the resources and information are available to Meredith who without this information would have done a "invasive and unnecessary" procedure.  Instead, after IV fluids and rest,the patient is back to normal; well, normal for a lupus patient on vacation in Seattle who spent half her trip in the ER of Seattle Grace!

I had always hoped that Shonda's soon-to-be canceled show "Private Practice" would have had a storyline on the benefits of alternative therapies used to help control and manage the chronic pain associated with lupus (and other conditions).  It would be an educational and entertaining way to raise lupus awareness. The "Private Practice" episode (or story arc) would have demonstrated the benefits of combining acupuncture, "talk therapy" and the use of herbal supplements to control and manage the pain in a patient suffering from mild lupus symptoms  This would have provided a new resource for those that suffer needlessly because their Health Care Provider is unaware of how these treatments can relieve pain and help improve the Quality of Life in patients lives.   Showing how the alternative therapies work on an individual patient on a single episode (or storyline) would have raised awareness for alternative methods of controlling chronic pain.

 

However, I would love it if Shonda found a way to incorporate lupus into my new favorite drama, Scandal. As a lupus patient/advocate/activist and "Warrior", I enjoy being a "Gladiator" (what "Scandal" fans call themselves) and would find incredible joy and satisfaction if Shonda and the team of Scandal writers worked "lupus" into the storyline.  One suggestion I would offer them is to "use lupus" as a way for a member of Congress who is caught "having an affair" with a prominent DC physician by a TMZ-like journalist.   Perhaps the journalist who captured the compromising photos in the hospital conference room has a young daughter who suffers from lupus and Olivia Pope comes to the rescue, telling the slimy paparazzo that both the Congressperson and physician will do more to help the future of lupus research if their reputations are not hurt by the scandal that releasing those photos would cause.  The photographer needs the money to pay for his daughter's rising medical bills and Olivia Pope and her team manage to have the physician and the Congressperson create a foundation for lupus patients who cannot pay for treatment.  The Congress member joins and supports the Congressional Lupus Caucus. If dreams could come true... there is a PSA at the end of the "Scandal" episode, asking all members of Congress to join the Congressional Lupus Caucus and all Gladiators to join the fight to cure lupus by supporting the Alliance for Lupus Research.

Please join me and tweet @ShondaRhimes ask her to "use lupus!"  Please tweet @ScandalWriters and ask them to pitch and "use lupus!"  Whether or not, @ShondaRhimes and the @ScandalWriters "use lupus", you can ask your member of Congress to join the Congressional Lupus Caucus.

  written for Day 24 of WEGO Health's National Health Blog Post Month.