Entries in Alliance for Lupus Research (26)


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!


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!" 

Enjoy more photos of the event and my team...!/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!)


Finding the flair by writing a "Dear Lupus" letter

Today I am going to write a letter to "lupus" ~ a prompt for Day 8 for WEGO Health's  National Health Blog Post Month (NHBPM) What should I say? Should I be nice and polite or should I be a pissed off patient, the truth will reveal itself soon enough.  Here it goes... setiing a 20 minute time limit to vent in my "Dear Lupus" letter.

Dear Lupus,

I would like to thank you for being a part of my life, but I won't.  I wish I could write you this letter and break up with you, so that once and for all I would be done with you, like a "Dear John" letter but it isn't that easy.  You are a part of my health and I have come to accept that.  I haven' t always enjoyed the terms of our arrangement but I have learned to cope.  Lupus, I don't give you permission to control my life anymore.  I appreciate your understanding that I am taking control of my health and you dear lupus are a part of that health.  I am an empowered patient and with the assistance of my health care team, we are working to manage your presence in my body.

Lupus, I am managing you.  I am grateful to you for the many lessons you have taught me.  The gift of enjoying the present moment.  Living with a chronic illness is a daily acknowledgement of how special and what a blessing life is.  Now you need to realize that I am the one in control of my health and while your presence is always felt, I never would have found my flair if it wasn't for you dear lupus, and my experiences with your flares.  My flair is always in full force, but this weekend I will be donning the purple cape and tights as I share my flair at the LA 2012 "Walk with Us to Cure Lupus" event in Santa Monica.

Yesterday, the Alliance for Lupus Research announced a new collaboration with Pfizer's Centers for Therapeutic Innovation to work together to "discover and develop new therapies for patients living with lupus."  Lupus, if I were you I would be worried that your end is near.  Organizations and pharmaceutical companies are coming after you.  Read the complete details here: Lupus, be afraid... be very afraid.

Lupus, I am a patient who supports the ALR and I doing more than walking for the Alliance for Lupus Research, I am leading the team "Lupus Awareness is Fun!" and one step at a time, we will walk until there is a cure and you are nothing but a memory.  Lupus, I am asking for your support to make you fade away... will you join my team and help improve therapies used to treat those that suffer from your wrath?

I hate to break it you... but in a few years you will be a footnote in medical school text books.  Lupus, you've been warned.


Amanda ~ a Warrior on the Quest to Destroy You.


I would like to thank...

Today the prompt for Day 5 of WEGO Health's National Health Blog Post Month I am writing about is "things I am thankful for... excited about... or inspired by."  This one should be easy as I like to accentuate the positive. 

If I were receiving an award for being a Lupus advocate at the ceremony, picturing something like the Academy Awards, my speech would read something like this:

"I would like to thank WEGO Health for encouraging and inspiring patients to write about their lives and conditions because I truly believe that sharing is caring.  You never know who is going to read your blog and learn something.  Hopefully, by sharing their thoughts and experiences, other patients will feel empowered as I do.  As a participant of their monthlong blogger challenges I have a deeper appreciation for other conditions and by reading blogs of others with lupus I know there is a support system amongst us.

With less than a week until the LA "Walk with Us to Cure Lupus" event, I am excited about wearing my "LA Lupus Lady" outfit (purple cape, tights while walking along the sand in Santa Monica. If you live anywhere close I hope you come and support the Alliance for Lupus Research .  This link is to my Walk Page.  Every dollar that supports me, directly funds Lupus Research because the ALR's Board of Directors covers all admininstrative and operating costs.  No other Luupus charity or organization does that. 100%!

I am grateful to the members of "Lupus Awareness is Fun!" whether you are walking with me and wearing a purple t-shirt or a supporter who donated to the team I appreciate each and every individual who donates to the Alliance for Lupus Research and the 2012 LA "Walk with Us  to Cure Lupus" event. By if you support my team, know that I am amiling and walking one step at a time, until there is a cure.  Without your support, I could not don my purple cape and tights as "LA Lupus Lady" and lead the "Lupus Awareness is Fun!" team with the passion I do. Join the team --> use the link connect with me and others who know that one step at a time, together we can find a cure for Lupus.

Thank you very much."



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 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...