Wednesday, October 22, 2014

My Experience At The Cushing's Advisory Board In New Jersey and NYC Trip

Just came back from the New Jersey and NYC trip and I sure have lots to talk about! I got to meet some amazing people and it was a memorable trip I will never forget. I'll start off by talking about the New Jersey Cushing's Advisory board experience and then I will put some photos below. What I learned during the Cushing's Online influencer advisory board was how our common goal of raising awareness for the disease got us all together in that room. Each Cushie that I got to meet were so brave and taught me valuable lessons from their strength. I learned about the heart of the company at Novartis and how much they do want to learn more about Cushing's patients and the patient's side of the story. Our opinions do matter and someone does care. Now how do we get the world to care and be aware? I also learned more about Signifor, the drug from Novartis that may help to shrink the tumor. I have no used it but there are always people who cannot have surgery that may want to see it as an option. Novartis also has created a program called PEAK that is a personalized support program dedicated to helping the cushie patient in their journey. All very useful tools that I wish I had when I was sick. I am happy to share the information and I think I will write another blog about all of what NOVARTIS offers and post some cool handouts I got from them.

 I got to meet many women who struggle with Cushing's and hear their story. We got to discuss about improving social media and efforts to get the disease to be recognized. I learned that regardless of how we feel towards the disease, the more we shine the light on Cushing's the better. During the meeting, I got a chance to understand everyone's point of view on the disease. What matters is that it is our own journey that brought us together and no matter how we put it out there to the world, we are still raising awareness. It just happens to be in our own way. Cushing's is very much debilitating and I want the world to see that and maybe for them to want to learn more about it. I understand we are not victims but survivors but everyone has their own progress that they have to make within them self. We are evolving, learning and growing from what had happen to us.  I want to thank the company Novartis and the kind people behind the scenes. They were non judgemental, had a clear message of how the point of view of Cushing's, curious to learn more about the patient's, and were accommodating to our needs. This trip has changed me and I am now more inspired to advocate for Cushing's disease/ syndrome.

Courageous Cushies and Novartis
When I think about how grateful I am about the gifts that Cushing's gave me. I use to think that it will somehow make me a better person, teach me patience and that I am lucky to get diagnosed so quick and be able to bounce back from it. But now I would say my gratitude and blessings have multiplied.. The lessons taught me to have the capacity to have compassion for those who struggle. To not judge anyone by how they act or what their journey is. Not to judge people by their looks or even my own. To look past the symptoms and to look deeper. To have opportunities to raise awareness and learn more. To be able to meet those with big hearts and to have a voice in the community. And the most valuable to me is that I got to meet a wonderful girl who said that my videos helped her in her struggle. To everyone who has contacted me, or replied to give me meaning to my purpose in life. And now I realize how valuable these blessings are. I use to complain that nobody understood me and I was tired of being judged, I wanted friends who I can relate to and now I see the wonderful supportive people around me, the people who stayed with me at my worst, and the new cushies that I know will be friends for life. I give my gratitude to the Cushies who are brave enough to share their story. The ones who helped me through my hard times and the ones who are helping others now. God has blessed my life. I am only paying it forward by doing my share of advocating. Let us continue to do this together. Sorry if this blog entry is allover the place but I am just trying to write it all down before I have a brain freeze. Here are lots of pictures from the trip.

Novartis provided me with information and paid for travel, accommodations and meals during our time together.

An honor to sit with Mary O'Connor founder of
Love these ladies and gents all amazing and have a great story

View from Shorthills NJ

Hiltons in Shorthills NJ
Rae gives me life ^.^

The sweet Alicia

Felt VIP for a few days thanks to Novartis :)
And this is when we arrived to New York City
View from Empire State
Time square -- look at the huge Toys R us!!

Puss and Boots sensed my Cat sweater

The lights really got me ha!

Top of the Empire State was beautiful


Flashy signs

Messin around in Toys R us
MIDNIGHT SHOPPING! There was 5 Forever 21 and 10 H&M at every corner!!
F21 Taxi The stores all have multiple levels and stay open til 2am!!!
My plaid kitty outfit. Too bad I had to change because it was too cold!

Brooklyn Bagels were legit!!

Donut Plant PBJ donut
Smoked Salmon cream cheese bagel
Ground Zero 9/11 memorial was so emotional to be there

On the Skyline "highline" was a long skyline on top of buildings you can walk

Top of the skyline chillin
Before our life changed when we discovered Century21 LOL

Beautiful yet chaotic

The crowds

Hi Tom Cruise!!

A taste of Asia

Outdoor Vendors

Cute spot

Pastries at Ferrara!!
It was so cold walking around we had to stop for wine to warm up and relax our feet!

Drunk in Timesquare :)
Gansvoort Market super fresh!

Taking in the beautiful scene

Is this where the Impractical Jokers hangout??? I was looking for Sal Vulcano!

View from central Park

Testing the Gopro

I was eating & looked up to see Jessica Alba was here!

Yummy all mine!

Sarah Jessica Parker and Conan!!

Drunk shopping at another H&M lol

Ipuddo! The lines are crazy long but we beat the crowd for early breakfast

Pork Belly Bao is TDF!!!

Before my Ramen life changes >.<

I don't know how they made that pork belly but it was so tasty and melts in your mouth

Don't get the cha chaa if you are not hungry
Central Park

Central Park View

Beard Papa's Cream Puffs!!

The best Cream puffs EVER

Cream puff stealer!


Brought some home to enjoy
Last Day
I never thought that I would want to go to NYC for some reason it never was on my to do list (even though I LOVE the show Friends and Sex and the City) but the minute we arrived my opinion changed of the City. There was so much to do, see, walk, entertainment, shows, food was at every corner and so was shopping. Like literally every store had atleast the minimum of 3 stories. Every street seemed to have an H&M. I think we went into a macy's with 10 floors and 5 starbucks inside! Pizza and Hotdogs everywhere! It was dirty and chaotic but some how everything seemed to flow together. The crowds weave around each other. There was rich and poor folks walking the same area with no kind of judgement since they are in a rush to go somewhere. People seemed to mind their own business. There were beautiful off duty models every where you looked eating, shopping, walking. There were hobos picking trash in the pizza joint and nobody cared. Guys walking the streets with furcoats and daisy dukes. It was just a good mixture of crowd and it seemed like anything goes.We missed our last bus so we were freaking out but this random man pops up out of nowhere to help and then disappeared. Thank you random man! I really felt relaxed in the chaos and there was something that soothed my anxiety. I am sure I felt like that because I was also on Vacation I don't think I could deal with it as a daily residency. But the trip to New York City has changed my outlook on the place. I think it was one of the best trips compared to the others i've taken in the past.  I can't wait to come back. I'm going to say it, I love New York!


  1. you are an amazing lady and i was so happy to meet you. you are my rockstar lady!!

    1. Ditto!! Can't wait for our next "baby" to come out ^.<

  2. Oh my gosh! What a trip! It looks like you had a lot of well deserved fun and got to meet people who understand what you've been though. Thanks for sharing your trip experience, I would have loved to have been there!

    1. Thank you it was so fun and learned so much. Maybe next meeting we can all go somewhere! How are your tests going?

  3. This comment has been removed by the author.

    1. Yes! If not we can always still meet up somewhere along the way =]

  4. your blog and videos are now up on the site! check it out on the computer because we are still working on the phone version. so excited

  5. hello beautiful pictures that well which was good trip and met people
    Greetings I'd love to talk more with you and also with people who have the disease Cushing right now :)
    many greetings rae and van :)