The magic of 12/12/12.

Today is December 12, 2012. 12/12/12

Twelve is my magic number.  Not my lucky number but my magic number.  I am too old to believe in magic numbers, but life with lupus has taught me to believe in more than coincidence and circumstance, so I believe in magic numbers, white butterflies and birds on a wire between telephone poles.  There is no logical reason to believe in magic, but I do it anyway.  I think that glitter, sparkle and magic are important elements of life, if one doesn't believe in something special is life worth living?  

The media madness about the Mayan Calendar, is something that I don't believe in.  I feel that we are going to experience a cosmic shift - one where the universe starts to open up to the beauty of magic and nature. You might think that my hope and the joy I receive by believing in magic is strange but the beauty and sense of calm is real and I know that this belief is what makes me "who I am".  If I stay in a hotel and my room is on the 12th floor or ends in 12, I smile and have a good feeling about the stay, is it more than random?  While they aren't as colorful, as a Monarch I believe in the magic of a "white butterfly" and ever since I can remember I feel watched over by the birds on a wire.  

Parents often say "The days are long, but the years are short."  I am not a parent, and am often reminded of that but those who are.  But, my life battle is a struggle to find the joy, beauty and magic despite being diagnosed with a chronic illness.  Today is a day, that seemed so far off... on 01/01/01 do you remember where you were or what you were doing on January 1, 2001?  I do.  For a moment, I thought and wondered if I would be alive on 12/12/12.  Here I am alive and writing, striving to thrive and share my story.  Here we are... December 12, 2012.  I am living with lupus, wondering do you believe in magic?


"Gotta Support the Team!"

There are many parallels to being a die-hard sports fan and someone who suffers with Systemic Lupus Erythematosus symptoms can range from generalized fatigue and weakness to disorders affecting the Central Nervous System, as a dedicated fan of the New York Jets and a woman living with lupus, I can tell you from my perspective that chronic pain associated with lupus is not comparable to the acute sensation of "sports fan stress" but during today's New York Jets football game I could not help but be inspired by how Rex Ryan and the team found a way to tolerate a painful start, despite injuries and endure to find the win.
Whether you are a fan of the Jets or any sports team, I think you'll agree with me and David Puddy (who painted his face like a Devil) because "you gotta support the team."  (Looking at the picture from Seinfeld, I almost see the butterfly rash on Puddy's face.) 
It is December 3rd and I am writing a blog asking you to support my team again.  Because I am participating in the "Virtual Walk" on December 8th, this Saturday.  My team name is "Lupus Style!" wherever you are on Saturday, you can be a part of the team.
In case you are unaware 100% of every donation to the Alliance for Lupus Research, directly supports Lupus Research thanks to the incredibly supportive and amazing Board of Directors.  Because the Board supports the ALR team by paying for all operating expenses, your donation directly supports and funds lupus research.  You gotta support the team.  When you support the Alliance for Lupus Research, you support the team on the path to discovering the cure.

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.

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.

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!


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.