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Entries in lupus (127)

Friday
Nov302012

A-Z wrapping up the awesomeness of #NHBPM & "LA Lupus Lady"

Trying to accentuate the positive without seeming arrogant, I decide to instead of using a "Get Out Of Post Free" I would ask my husband to help me and guest write about the Day 30 (the last one!) prompt for WEGO Health's #NHBPM, "why I'm awesome.  So in true "Lupus Style" I asked for the assistance, last night and got it, in the form of this post.  However, because there is usually a "however" in a life of someone who lives with lupus, (or any chronic condition) when I asked for help this morning, while still half-asleep I was jolted awake because a simple task on the "honey do" list was too complex for my husband, apparently as can be seen by his eloquent post below he thinks I am kind of cool and likes me, but when it comes to being a caregiver, there is much to be desired.

"Here's why Amanda "LA Lupus Lady" is Awesome... a guest post written by me, Steve Leblang, her husband aka: LA Lupus Lady's Man!  I think Amanda is awesome for many reasons!   I will list the reasons alphabetically... 

A- Amazing--the perfect description for her passion and energy 
B- Beautiful--inside and out
C- Creative--how else can someone do 29 inspiring posts in 29 days?
D- Distinctive-- the definition of "Lupus Style"
E- Entertaining-- to "watch her watch" something is a joy unto itself
F- Fascinating-- A day doesn't go by that I don't learn or experience something new thanks to her
G- Grateful-- Both for life and the Dead
H- Huggable-- Hey, I'm allowed to be biased in this opinion!
I- Inspiring -- When I see how her words of encouragement and empowerment affect so many every day, I'm reinvigorated myself to be as good as I can be
J- Jumping Jacks -- A great way to stay (somewhat) in shape during football season!
K- Kissable-- See "huggable"
L- (tie) LA, Lupus and Lady --for obvious reasons!
M-Magnanimous.  Webster's definition is "showing or suggesting a lofty and courageous spirit".  Most appropriate!
N- New York.  My hometown, and our favorite city to travel to, especially during baseball or football season!
O- Original.  My wife is truly unique in how she expresses her contagious passions
P- Purple.  Her favorite color (as if the site's frame wasn't a giveaway)--and I have to admit I look pretty good in it myself!
Q- Quick.  She can finish my sentences ahead of me--her mind is THAT fast--and you should see how it helps her score big in Words with Friends!
R- Rich.  In heart and soul, and we're working on the money part together...
S- Social.  As in "media", and especially as it relates to engaging with other people.
T- Twitter.  She makes 140 characters as entertaining as possible with every tweet.
U-Unstoppable.  When she's determined to make something happen, forces of nature and beyond can't slow her down.
V- Victorious.  Not everything is distinctly in the "win" column, but every day we're in there fighting, and that's a victory in its own right.
W- (tie)  Wonderful, Wild and Wacky.  She's all three, often at the same time, and you never know how much of each you're gonna get... 
X-  eXquisite.  This applies to her tastes as well as her heart.  She's made me appreciate the subtleties of fashion and style, and that's quite a leap for a guy who at one time couldn't wash his underwear without it turning pink
Y- Yummy.  Allow me to plead the Fifth on details here...
Z- Zingy!  OK, it's not a real word, but she makes my heartstrings go "Zing!" every morning, so I'll contend that it fits here...
Amanda is awesome in more ways than I can count... from A to Z Amanda is a jigsaw puzzle of awesomeness!
~ back to our regularly scheduled post.
Thank you honey.  This post written to conclude November 2012, WEGO Health's National Health Blog Post Month.
 
To wrap up #NHBPM thought that instead of "tooting my own horn" I would let my hubby @SteveLeblang tell you why he "likes me" (and thinks I am awesome.)  I have written about lupus in a variety of ways, but in true "Lupus Style" I support WEGO Health but am glad November is over.  Now I have to "talk" to my husband about the proper methods of early morning communication with his half-sleeping wife who suffers from lupus, fibro, APS and IMS (a newly discovered condition, I call: Irritable Morning Syndrome).  So the last day of #NHBPM is starting just like it began a mere 30 days ago... I am struggling to shine, despite the factors that want to engulf my fire and "flair" - thank you for reading and have a wonderful day.
Thursday
Nov292012

Accomplishing "Lupus Style" in 2013

How am I supposed to think about plans for 2013, when I am not done with November's National Health Blog Post Month #NHBPM for WEGO Health yet?  If there is anything that John Lennon and Systemic Lupus Erythematosus (SLE) have taught me it is that "Life is what happens while you are making other plans" yet I am making plans.  Looking forward is an important part of my life with lupus.  I look forward and plan.  I know now that in January, Lady Gaga is bringing her Born This Way Ball to Staples Center and I am a "Heavy Metal LOVER" Monster!  I have already started working out so I can dance all night.  I hope that exercise classes (with Richard Simmons, @TheWeightSaint) will help build up my stamina.  Dancing around the living room listening to Lady Gaga's songs so I can sing every word along with her.  (I love the "living room", don't you? The idea of room that is just for living.)

The one thing is that I would continue from 2012 into 2013 is to lead my team "Lupus Awareness is Fun!" as we walk at MetLife Stadium in New Jersey and along the beach in Santa Monica, California and in 2013, I want to lead a team of walkers in New York City!  I wanted to lead three walk teams to support the Alliance for Lupus Research "Walk with Us to Cure Lupus" in 2012, but I only led two.  I want to do more for the lupus community and in 2013, I will accomplish my goals.  Because like the Alliance for Lupus Research say "Together, we can cure lupus."  I may not be a researcher or scientist but as an advocate for awareness and research maybe the contributions of someone who supports the "Lupus Awareness is Fun!" team will be the crucial funding to discover the next innovative therapy.  Since I don't know whose dollar is going to be the one, the crucial one dollar that helps take lupus research one step closer to a cure.  I walk and if I walk in three cities in 2013, I will walk in four cities in 2014. Until there is a cure for lupus, I will walk.

Pictured here with Tiffany Peterson on the field at MetLife Stadium (New Jersey) in May!

 

On stage at the State of Now 2012 "Lupus Chat, Lupus Style." at the 92nd Street Y, New York in June.

Kicking it with the Los Angeles "Lupus Awareness is Fun!" team in Santa Monica, California in November! Wearing my purple boots, tights, sequin skirt, and the cape attached to my purple jacket!  You might think that I am addicted to sharing that 100% of all donations to the Alliance for Lupus Research directly fund Lupus Research but until there is a cure, there is the ALR.  http://lupusresearch.org/

One step at a time for the Alliance for Lupus Research. Other plans for 2013 that should have "passion coliision" warning signs... I booked lunch reservations at Joanne's Trattoria for World Lupus Day, I am so glad that Travis is looking forward to hosting us again.  I hope that I will be chosen by @jeffpulver to share (speak) at the State of Now 2013 on stage at the 92nd Street Y in June.  I can't wait for these and other chances to share my story at conferences, online and on TV.

Now it is time to take a breath and a drink of water, ramping up to share how my "passions will collide" in 2013 is fun and making me thirsty!

Wednesday
Nov282012

Dealing with negativity

As someone who strives to accentuate the positive.  I am going to put all my cards on the table to let you (gentle reader) know how I "deal" with negativity.  Whether the meanness comes from a single bully or an entire organization, like the Tom Petty song says "I won't back down".  I will not change who I am or stop sharing how I thrive as a woman who lives with lupus.  If my blog posts, tweets or Facebook status give one person a reason to keep smiling or keep fighting then I am doing my job as a patient/advocate/activist.

(Sandra Oh picture/Christine Yang "Grey's Anatomy quote from Entertainment Weekly)

Earlier this year, my goal was to demonstrate the unity in the lupus community.  While my goal has not changed, I soon realized that the lesson I (still) had to learn is that when people show your their true colors believe them.  Demonstrating my support for the lupus community, is something I do because it is who I am.  I am not looking for recognition or accolades... I offer my time, energy and support when I can, this year I have experienced that they (either certain individuals or an organization) seem more than willing to accept my (and your) assistance to help their cause on their terms.  In 2012, I have learned to be clear and precise in my communication.  I have been hurt and frustrated by lupus.  I will not allow others to have a negative impact on my life, writing or work.  Apparently, it isn't enough that the disease wrecks havoc on my body and in my life.  Some facets of the lupus community have shown that they do not care about focusing on the positive.  I am going to keep shining a spotlight on how I find the "flair' while not focusing on the flare.

I am a strong woman who voices her passion for sharing Lupus Awareness and the need to fund Lupus Research.  I am not a utensil.  If I was a utensil, I would not be a spoon, I would be a purple knife.  If you have a problem with that, let's talk about and deal with it.  Together, we are on the same team.  Let's collaborate on a solution instead of creating more conflict.

 

  Day 28 of WEGO Health's National Health Blog Post Month.

 

 

 

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.