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...