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Entries in WEGO Health (46)

Friday
Nov162012

Music as Medicine "Lupus Style" Playlist

There is power and magic in the beat of a heart and a drum, the beat of life... Put the metaphors aside and you too will understand what I mean about how I use "music as medicine" medicine that is stronger than the best pharmaceuticals available, there are medicinal benefits that happen while listening and dancing to music.  I am not a scholar or scientist but I know that hearing the right song can change my mood and take me to another place, often one without physical pain.  WEGO Health's National Health Blog Post Month writing prompt for Day 17, Make a playlist for your Health Community.  Here are the songs on my "Lupus Style" playlist for the WEGO Health Community.  Lupus or not, I hope you find power and magic in the songs and music that moves me.

Listed Alphabetically...

Ain't No Mountain High Enough ~ Marvin Gaye & Tammi Terrell

Beautiful, Loved & Blessed ~ Tamar (Featuring Prince)

Bittersweet Symphony ~ The Verve

Born This Way ~ Lady Gaga

Could You Be Loved ~ Bob Marley

The Edge of Glory ~ Lady Gaga

Get Up, Stand Up ~ Bob Marley

Glamazon ~ RuPaul

Goin' Down The Road Feeling Bad ~ Grateful Dead

Good Riddance ~ Green Day

Here Comes The Sun ~ Nina Simone

I Am Woman ~ Helen Reddy

If My Friends Could See Me Now ~ "Sweet Charity" Soundtrack from the Musical

Let Love Rule ~ Lenny Kravitz

Love Is All Around ~ Sonny Curtis (Theme from "The Mary Tyler Moore Show")

Lovin', Touchin', Squeezin' ~ Journey

Mi Shebeirach ~ Debbie Friedman

Never Lost My Way ~ Ginjah

Orange Colored Sky ~ Lady Gaga

Paper Bag ~ Fiona Apple

The Queen ~ Lady Gaga

Reflections ~ Diana Ross & The Supremes

The Scientist ~ Coldplay

Sisters Are Doing It for Themselves ~ Aretha Franklin & Eurthymics

Stoned Soul Picnic ~ Laura Nyro

Tell Me Something Good ~ Chaka Khan & Rufus

Theme from Mahogany (Do You Know Where You're Going To?) ~ Diana Ross

This Little Light of Mine ~ Julie Silver

Try Jah Love ~ Third World

Warrior ~ Matisyahu

We Went As Far As We Felt Like Going ~ The Pussycat Dolls (from "Shark Tale" Soundtrack)

What I'm Fighting For ~ Matisyahu

Wonder Woman ~ Super Hero Invasion 

Without hearing the music or lyrics, simply reading the song titles out loud is empowering add the magic of the talented musicians and enjoy the healing power of the music of the "Lupus Style" playlist.  

*The "Lupus Style" playlist is now available on iTunes, and in true "Lupus Style" not every song is available for purchase so you will have to dig a little deeper for the entire collection.  

Friday
Nov162012

Illustrating "Lupus life Style"

Picture it... I am at the drawing board (literally, a drawing board) and have the ability to create a comic strip about lupus.  Anyone who knows me, knows I like to share that "Lupus Awareness is fun!"  Today's prompt Day 16 for WEGO Health's National Health Blog Post Month is a fun one, it got me thinking (and dreaming) "what would a comic strip about lupus look like?"

As creative director of the lupus comic, I would consider many drawing styles and a variety of artists before making my final decision.  My personal favorite comic wasn't a strip found in the syndicated national papers, but was found in the alternative weeklies, drawn by Lynda Barry Ernie Pook's Comeek, was fun to find in the pages of the LA Weekly.  I still have the carefully torn "Super Right On!" despite the fact that I have the Lynda Barry book "The Greatest of Marlys" that has the comic included.  I love that Lynda Barry has a tumblr page http://thenearsightedmonkey.tumblr.com/ (thanks to the miraculous wonders of the internet, you can check it out now...)

Lynda Barry would be on the "short list" of artists I would want working at the "drawing board" - not only is Lynda wildly talented and creative but she has a knack for combining her words and pictures in a way that can makes me smile and touch my heart simultaneously.

 

 

I grew up when "Cathy" by Cathy Guisewite was the illustrated version of the "everyday modern woman" whether she was having issues at work, problems with her mother, struggling with her diet or getting ready for another date with Irving during a time before Twitter "Cathy" was the quintessential single lady making it through life on her own terms.  I have no doubt that Cathy Guisewite would be able to capture the struggles and joys of "life with lupus".  When dealt with humor and levity, serious issues can become a part of the conversation.   

 

Margaux Motin is an illustrator from France with a "flair" and her drawing capture a spirit and "have personality" that I strive to embody with the idea "Lupus Style" and would want in the comic strip about lupus.

 

Grace Coddington does these incredible cat drawings and fashion illustrations... perhaps if she could sneak away from her office at Vogue working with Anna Wintour, she could help me create a comic strip.  A self-proclaimed "aspiring fashionista" who lives with lupus, I can dream.  Grace was a model and is now the Creative Director of Vogue whose doodles appear in the magazine and have been published in the book "The Catwalk Cats", oh so chic. 

Once the talented artist is selected we would work together, to ensure that the stories, arcs and humor were honest, authentic and joyful.  Would I choose Lynda, Cathy, Margeaux or Grace?  I love them all for different reasons.  I can not choose... I may not be able to choose an illustrator but the comic strip would be called "Lupus life Style" - some decisions are easy.

Thursday
Nov152012

Connecting & Connection = Participatory Medicine

Healthcare begins with connecting and connection.  Do you feel a connection to your doctor?  Are you connecting about your concerns and treatment plan?  I was going to be "cute" and instead of using a "Get Out of Post Free" Day take the easy way out of answering the prompt from WEGO Health's for National Health Blog Post Month (#NHBPM) Day 15 which is "Why healthcare companies (or healthcare professionals) should use social media." With a simple and short... "Why not?" Done, post the end.  But the reasons our Health Care Professionals (HCPs) should use Social Media need to be shared. 

There are many reasons, HCPs need to use Social Media.  Social Media is a way to engage the online patient community.  By engaging online, perhaps patients who are looking for a new practioner would see the online engagement and choose to visit the "engaged" doctor - that of course should not be the primary goal but a benefit of being online.  Becoming active in Social Media means learning guidelines and practices and joining the conversation.  The HCPs should not fear the unknown waters of Social Media.  When thoughtfully done, most HCPs would tell you that Social Media is a new way way to communicate with your current and future patients.  Healtcare is moving forward.  Patients are online, imagine the positive benefits of being an engaged HCP.  I hope and believe that more HCPs will choose to get online and join the Social Media movement.

Once a HCP decides to get online.  I hope that hey would take the pledge.  Not the Pledge of Allegiance but the pledge to join and support the Society for Participatory Medicine.

I truly love this quote from the #S4PM (twitter hashtag for the Society) "Providers and Patients Working Together.  Participatory Medicine is Better Medicine"

Straight from the home page because I could not attempt to do justice to their work and goals.  "The Society aims to advance the understanding of physicians and other professionals in the importance of well-informed, empowered and engaged patients making informed decisions about their care and treatment; to foster communication among medical, communication, patient advocacy and public health sub-specialties and the exchange of a wide range of ideas related to participatory medicine; to support informational and other research programs of the highest quality in participatory medicine; and to proactively minimize the effect of the digital divide in the development of participatory medicine in minorities and disenfranchised populations by providing information to patients through the distribution of informational materials and correspondence, amongst other activities."

http://participatorymedicine.org/

The connecting and connection that happens online is not meant to replace the personal in-office visit with the HCP but Social Media can supplement and address concerns that may not require an office visit which would save the HCP and patient time without effecting the quality of care.  Begin with emails.  Appointment reminders and medication refills alone if handled online could save the HCPs support staff hours of time.  When a HCP gets engaged the patients benefit, the support staff benefit and in the end the HCP benefits which is good for Healthcare.

Encourage your HCP to join and supprt the Society for Participartory Medicine.  And do like I did and nominate them (...or your favorite!) Health Activist for a WEGO Health Activist Award. http://info.wegohealth.com/healthactivistawards2012/ 

Follow @s4pm and join the conversation during ehe #s4pm Twitter Chat on Wednesdays at 8PM ET/ 5PM PT ~ see you there.

Wednesday
Nov142012

Just say no to negativity.

There's a saying that goes "Never Complain.  Never Explain.  Never Give Advice."  Yet today's prompt is asking me to give advice for dealing with negative feedback in my community so "Never, say never."  Welcome to Day 14 of WEGO Health's National Health Blog Post Month...

As someone who has recently faced adversity for my method of sharing and advocating for Lupus Awareness, I feel compelled to share what I have learned with others.  The hardest thing is writing this post... in fact, I had planned a complete detailed post for the alternatte prompt "My life is reality show." in order to avoid addressing the issue of negativity in the community.  While I was participating in yesterday's WEGO Health weekly #HAchat on Twitter, I decided to scrap the reality show, which happens a lot in the TV business and start thinking about the tough stuff.

Whether your negative feedback comes from an individual or an organization, my advice is the same.  Stay focused on your goals.  Stay true to your heart.  Don't let anyone silence your voice.  Perhaps the person is having a hard day, or in a lot of pain.  I strive to feel empathy.  Having had my share of "bad days" and pain, I understand.  The most difficult negativity for me is when the attacks are in the form of passive aggressive tweets.  If you have something to say about me, you should have the courage to say it, honestly.   My goal is to rise above it.  To soar and find my wings of "flair" - it is not easy.

All I want to do is share that "Lupus Awareness is fun, lupus is not."  A few people have complained that I am too positive.  I am not, ask my husband.  I simply like to share and celebrate what I can, when I can, how I can.  I choose to focus on "Lupus Style".  I am often get empowered when I read or hear stories of other lupus patients or conditions through WEGO Health's #NHBPM or #HAchat.  My advice would be to participate in a #HAchat, there you will find support and a community of friends.  When the so called "haters" show up; stand up and rise above it.  Just say no to negativity.

The stress of negativity isn't good for anyone, especially those with chronic conditions.  I am bewildered when someone who has the condition and knows this intentionally puts negativity out there (on the internet).  My bouts with negativity have made me stronger.  I know that some people want to put duct tape on my mouth and unplug my connection.  I won't back down.  I am who I am - a lupus patient whose voice will not be silenced. 

Monday
Nov122012

2012 LA Alliance for Lupus Research "Walk with Us to Cure Lupus" ~ Lupus Awareness is Fun!

One step at a time; together we walked. On Saturday, November 10th, I walked and lead the "Lupus Awareness is Fun!" team.   The Los Angeles "Walk with Us to Cure Lupus" surpassed goals and raised more than $140,000 for the Alliance for Lupus Research.  Without the sponsors and the Board of Directors, I wouldn't be able to tell you that 100% of every dollar raised is directly funding lupus research--but this is the ALR we are talking about so I can!  That's right, 100% of every dollar raised is supporting lupus research.

One year at a time, until there is a cure for lupus, I will lead a team and support the "Walk with Us to Cure Lupus" event.  This year for the first time my mom and brother joined "Lupus Awareness is Fun!" and I am grateful to them and all the members of my team.  I appreciate my husband Steve and my friend Scott who have been here before and year after year come back to support me and as Scott says for the Walgreen's water.  Thank youtoo to Al and Diane, who joined my team and supported me and my mom by walking and generously supporting Alliance for Lupus Research. 

   The "Lupus Awareness is Fun!" team is more than those who walked but those who gave as well.  I know that there are many causes and charities seeking your support and I am truly grateful that you chose to support mine, the ALR.   With your help we are closer to a cure.  Thank you to Steve's co-workers at GSN, as well as Aaron Paquette, Mickey Langdon, Ingrid Birmingham, Grandma Idella, Heather Grace, Wendy Abrams, Beth Herzhaft and the other friends who donated to our team. 

 

Sharing is caring.  It isn't too late; you can still support me and the team "Lupus Awareness is Fun!" http://walk.lupusresearch.org/site/TR/WalkwithUs/Walk2010JasperRedesign?px=1925494&pg=personal&fr_id=2990 

Enjoy more photos of the event and my team... https://www.facebook.com/#!/media/set/?set=a.4418558774893.174106.1016580826&type=1

(Better late than never - my Day 10 post for WEGO Health's National Health Blog Post Month!)