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Entries in Lupus Style (19)

Monday
Jul162012

Lupus Style in NYC

Do you know about "Lupus Style"?  Lupus Style (or #LupusStyle as it is seen on Twitter) has become my way of life for over 28 years but it was only when I wrote a blog post during WEGO Health's Health Activist Writer's Month Challenge that I defined it for the first time.  To me, Lupus Style is how I deal with my Lupus.  I have said before that "every Lupus patient is unique and like a fingerprint we each have our own."  My unique way of living with and thriving with Lupus is by searching for the beauty in where I am, wherever I am.  I will be the first to tell you that I am not an expert on positive attitude but I will share that when I look to "accentuate the positive" I usually find something to appreciate. 

My last post was written just before I left for New York City for my #140conf12 journey.  First things first if you ever have a chance to fly Virgin America @VirginAmerica you should.  The entire flight experience is a party.  From the moment you arrive in the terminal there is party music pumping and when I heard Lady Gaga's "Just Dance" I knew that I would have no trouble dancing during this trip to NYC!  I was already filled with anticipation, though I had planned on more pre-trip relaxation and down time - that never happened- I knew I would sleep like a baby on the plane.  Once through the security check point, and finally on board Flight 420 to JFK.  I realized that I was on my way to the #140conf12 and the purple lighting on board the Virgin America plane only helped enhance my mood.  (Purple is the color of the #140conf12 and the Alliance for Lupus Research!)  Knowing that the city doesn't sleep, I shut my eyes to imagine the week ahead and soon I was dreaming while flying across America.

Upon landing in New York City early on Sunday, June 17th - Father's Day to most but to me my niece Rachel's birthday (look for the upcoming post via SavvyAuntie.com) after spending the day with Rachel, instead of resting and adjusting to the time difference and taking it easy like I a "good Lupus patient" would have in true #LupusStyle I pushed myself by shopping, I almost wrote "buy shopping" in Soho after shopping I needed a break and we met Tiffany (@TiffanyAndLupus) as we got to the hotel, (the hip and chic Hudson Hotel @HudsonNYC) just in time for #LupusChat.  After the chat was over we went upstairs to the hotel room.  The Hudson Hotel is "my NYC home away from home" and since I was in the city for an extended stay I upgraded from my usual best deal to a room with a little more space and an incredible view of the city. 

The hotel room was a bustle of activity... Rachel showered, while I laid down on the bed.  Tiffany and Candace Mitchell (of the SLE Young Leaders) who was the guest on #LupusChat earlier were hanging out and talking about how great it was that a doctor participated for the first time and she had listeners from 6 or was it 7 countires. (Lupus fog...)  We prepared to go to dinner.  That's why I realized that moments like this are to be celebrated.  My niece and I were with two of my Lupus friends in New York City! (Freak out...toss the confetti time to celebrate.)

After an amazing dinner at my new NYC favorite restaurant (sorry Nobu.) Joanne Trattoria (@JoanneTrattoria) with my niece celebrating her birthday and Tiffany my "Lupus Sister"  Tiffany and I told Rachel about our lunch there on World Lupus Day and she wanted to see for herself if the macaroni and cheese was worth drooling over.  It was we ordered two for the three of us in addition to our appetizers.  Chef Art Smith (@chefartsmith is truly a Top Chef Master!) recipes were cooked to perfection.  That's when the texts started coming in... first @chefartsmith tweeted then Rachel had to prove to her New Jersey friends that she was in a restaurant owned by Lady Gaga's parents.  Rachel texted "b/c my Aunt told me." It wasn't enough to satisfy her friend but the Instagram of the menu featuring the words Proprietors Joe and Cynthia Germanotta did.  We toasted to Rachel's birthday and then we toasted to Joanne, Lady Gaga's Aunt.  Then we raised our glasses to all Aunts with Lupus.  Then we cheered to all Lupus Warriors past, present and future.  Then the text that Rachel's parents were ready to head back to New Jersey came and our fun was winding down.  We walked off a little of our dinner as we passed Lincoln Center Rachel posed for pictures.

After safely getting Rachel back into the car, Tiffany and I headed back to the hotel and started our spa night.  I think we stumbled down to Duane Reade and got a few essentials (epsom salts and a blue face masque) before heading up the coolest escalator in the world at the Hudson.  Don't remember much about that night, blame the Prosecco at Joanne's and too much toasting earlier in the evening.

My next post is going to be about Monday June 18th...

 

Saturday
Jun162012

a few more than 140 words...

This is it, the state of now is here, and I am packing my suitcase as I embark on the adventure of a lifetime.  Tonight, I will be flying Virgin America across the country to New York City.  The anticipation has been building and the pace has ramped up... now is the time to pack for my #LupusStyle #140conf adventure.  I feel like the Virgin America slogan "the world is my runway..." and the stage of the 92nd Street Y connects me to the world. 

Rushing around, means there is no time for me to write with the eloquence I had hoped but I promise you this my passion and enthusiasm for connecting is ready.  Are you?  Follow along.  You will learn more about "Lupus Style" over the next week if you watch my Twitter feed... remember that "Lupus Awareness is fun." I hope you connect with me and my journey.

Link to the NYC 2012 "State of Now" http://nyc2012.stateofnow.com/

Link to the NYC 2012 "State of Now" Speakers http://nyc2012.stateofnow.com/speakers-2

Link to the NYC 2012 "State of Now" conference schedule http://nyc2012.stateofnow.com/schedule

Tuesday
May292012

The Alliance for Lupus Research Walk Day at MetLife Stadium!

"Lupus Awareness is fun" and "I love it when my passion collide" two quotes that I can't say often enough.  Well on May 12, 2012, I had a wonderful day and my passions collided on the field at MetLife Stadium.  The Alliance for Lupus Research New Jersey "Walk with Us to Cure Lupus" took place at the home field of the New York Jets (okay, the New York Giants play football there too.)  I was smiling all day... okay if you have been reading my posts about my adventures with Tiffany (@TiffanyAndLupus on Twitter) then you know I had been smiling long before I woke up on the morning of May 12th.  The reason i traveled 3,000 miles was to walk with the Alliance for Lupus Research in New Jersey at MetLife!

with Tiffany in her butterfly wings, me in my purple cape.  "Lupus Awareness is Fun."

First things first, before we got on the field we dropped off our donations that were collected off-line, aka in person!  Every donation made to the Alliance for Lupus Research directly supports Lupus research because Woody Johnson and the Board of Directors funds all administrative and operating costs.

If are JETS fan like me, you know when a great play happens on the field that the players will "fly like a Jet!" to demonstrate their joy.  It was amazing for me to "fly like a Jet" and fly on a jet for the ALR!

The best thing about living with Lupus is the friendships I have developed within the Lupus community online.  There is nothing so special as hugging a friend and "Lupus Sister" in person.  Imagine the strength and support we felt gathering together in New Jersey to support the work of the Alliance for Lupus Research it was truly amazing.

Tiffany Peterson, Kelly Dawn Kelly and me (Amanda Greene) ~ three Lupus Ladies of Twitter, follow us @TiffanyAndLupus @KellyFund4Lupus and @LAlupusLady see you online or at the next ALR Walk!

Having my sister-in-law and niece joy my team on the field was incredibly fun!  Never underestimate the power of family love and support.  Every Lupus patient needs a support system, my team showed up and walked with me on May 12th, but they are there for me 365/24/7.

To enjoy the full album (There are a lot more pictures, I went crazy on the "Panda Cam" as my niece would say.) of my photos from the 2012 New Jersey  Alliance for Lupus "Walk with Us to Cure Lupus" event held at MetLife Stadium on May 12th. Click the link and enjoy... https://www.facebook.com/media/set/?set=a.3299085715203.2125917.1209711262&type=3

To learn more about Lupus from the Alliance for Lupus Research http://www.lupusresearch.org/about-lupus/about_lupus.html

To donate to my next Alliance for Lupus Research Walk ~ held in New York City on October 2Oth, as an incentive for you to donate to a walk that does not happen until October for any donation received for me and my NYC ALR Lupus Walkeffort made through June 1st! My husband is going to match it!  Every dollar truly counts (disclaimer up to $365) http://walk.lupusresearch.org/site/TR/WalkwithUs/Walk2010JasperRedesign/75370776?px=1925494&pg=personal&fr_id=3010

Enjoy the rest of Lupus Awareness Month!

Hugs and Smiles,

Amanda

 

 

Sunday
Apr152012

Lupus Style.

Today, I am going to blog about my "Lupus Style".  If you follow me on Twitter https://twitter.com/#!/LAlupusLady, you may recognize the hashtag I have been using lately #LupusStyle ~ I find that "Lupus Style" fits a variety of situations.  It can refer to the way weather will affect my joints and the degree of pain I experience.  It may be a reference to the incredible power that, as a woman who suffers from a chronic disease, I summon the energy to accomplish to what many will seem like the simplest tasks.

My favorite "Lupus Style" look of the Winter/Spring 2012 is this one.  No fuss and fuzzy.  Lavendar fuzzy robe, purple fuzzy socks on top of my roomy purple shirt and boxers (unseen!) and I work it by wearing Chanel shades not too be chic but to cover the dark circles that make me look like a Panda Bear.

I don't like to be a grouch but when I wear my Disney PJs with "Grumpy" on them, it is easy to embrace the angry side of living with a chronic illness like Lupus.  In this picture, I am copping a pose like the one "Grumpy" is doing on my grey flannel pajamas.

This is an ultra-luxe and super comfortable look from my Winter/Spring 2012 closet.  My arm is extended to show the ruffles 3/4 length sleeve of the Cynthia Rowley cotton-cashmere robe.  Underneath is a soft brown t-shirt from Rachel Pally's Boyfriend/Girlfriend Collection.  All of this is layered over basic white long underwear.

ESSENTIALS of any "Lupus Style" closet, great socks!

These black cableknit socks have a furry beige "collar", adding a touch of fun to the basic black warm socks. 

Long before, I was "LA Lupus Lady" I was known as "Amanda Panda" to family and friends, wearing these panda socks on days when I am feeling especially 'Lupie' help me remember the fun days past and to keep in mind there are fun days ahead.

"Lupus Style" is more than being comfortable where you are (even if you are in bed) and appreciating a pair of fuzzy warm socks and a chic robe.  "Lupus Style" is coming to accept your limits while pushing yourself on the days you can and not being critical on the days you can't.  "Lupus Style" is celebrating the accomplishments without judgement and the pain without regret.

I hope you find and celebrate your style today.

For today's WEGO Health Health Activist Writer's Month Challenge post I took my inspiration from the word "style" I did not to write about my writing style.  Like living with Lupus, I just find a way to do it - or usually avoid it.  No apologies, no regrets. Lupus Style.

*This post won a "Superlative" from WEGO Health ~ #HAWMC 2012 Best Spin on a Prompt.  The original prompt "Writing with Style.  What's your writing style?  Do words just flow from your mind to your finertips?  do you like handwriting first?  Do you plan your posts? Title first or last?  Where do you write best"

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