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 me..you 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.

 Disclaimer: 
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 cushings-help.com

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

Traffic

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!

Mochi's

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!

OCTOBER Cushing's Advisory Board in New Jersey

I am pleased to share that I was invited to A Cushing's Disease Online Influencer Advisory Board In New Jersey. My sponsor is company called Novartis which specializes in finding care and cure for rare complicated diseases. I was asked to come to the Advisory board when they found my videos and blog. I am really happy to be able to have this opportunity to be a part of something for our Cushie community. Thank goodness there are companies like Novartis that cares about us.

Being sick with a rare disorder or disease is hard because there is limited information out there which leads to limited knowledge when we search for help. There is a small community and there are less known medications for us. That's why doctors have a hard time recognizing a rare disorder and it makes it much harder to get the proper treatment, I don't like to always compare it to Cancer or ALS (god bless the people going through those) but there is little awareness. When you see a pink ribbon you automatically are aware of breast cancer. When you see an ice bucket challenge you think of ALS. What about Cushing's? Sure we have Cushing's awareness month but it is only known in our small community. How do we get it to be known worldwide like a pink ribbon would? I know soon our time will rise. Soon enough our little blue yellow ribbon will be known.

 When I first started doing this blog, it was just an outlet to complain because I felt like nobody understood what I was going through. Then I started to research and reach out to other patients and found a safe haven in online forums and other blogs but I had no idea people were reading my blog and seeing my videos. I was at a point that I didn't want to check my views because I thought that no one would even watch or read so what is the point? It was only when I got my first email from a Cushing's patient was when I realized that people are watching. I then checked my youtube account to see that there were others like me trying to reach out for answers in the comments. Now for Novartis to reach out to me is very exciting and I cannot wait to meet the people behind this amazing company. And I think I may also meet some cushing's patients in the flesh!
Below is the link to Novartis website and statement:

Our mission

Our mission is to care and cure. We want to discover, develop and successfully market innovative products to prevent and cure diseases, to ease suffering and to enhance the quality of life.

http://www.novartis.com/index.shtml

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

My meeting with a friend from my blog 
  October is such a great month. A friend from my blog reached out to me a few months ago. She knows that her body is showing some abnormal symptoms. She is in the stages of testing everything to see what the problem may be. She did have a recent stay in the hospital for another health problem. Having abnormal symptoms almost like Cushing's may indicate some kind of mystery health issue that needs solving. She was traveling to my city last week and so we decided to meet up. We talked and hung out for hours and she is really an amazing person with a big heart. I feel so lucky to be able to meet someone like her that we all can relate to. I can relate to her on many levels since we are both too young to be feeling this way. Come visit Houston again Adrianne! Or maybe we can meet up at Sea world =] I ask that we pray for Adrianne will get her diagnosis soon so she can have good a healthy quality of life back.

So glad to meet this beautiful young lady ^.^ <3

 

Test Results & New Video Update!

Hi guys, I was bored surfing on youtube and clicked on my channel only to see that the Cushing's video views are up to 14k with many comments. It has really made me happy that people are watching, talking, connecting and raising awareness for Cushing's syndrome and disease. Thank you all the viewers, subscribers and for the shares on youtube. I feel a sense of connection from the community to one another and my goal is to make this illness a little more known out there. I wish I could get an already famous youtuber to just shout us out and so we can have a bigger amount of awareness.

It's easy to forget as time goes by. We get this illness and write blog about it but then once we recover we forget how hard it was and how rare it is.  I get that sometimes we just want to forget about what had happened and move on from our life and life begins to feel better so we don't really care to complain on blogs but you guys, please keep sharing your story to the world because you might just save one person's life for viewing your story. There has to be people who are proactive about awareness for every other disease for it to be well known so we need to do this for our Cushie family. Sorry if I sound all preachy but I really hurt when I get these emails of people who are going through the same thing I was a few years ago when the disease was in the early stages. Being misunderstood, misheard, ignored. I was reading a story of a celebrity who is depressed, gained alot of weight and can't lose it and I just wonder do they know about CD? Or I walk down the street and see a person with a moonface and buffalo hump and wonder if they know they are sick?

Fluctuating Test results. Not sure if it's improvement but hey better than having high cortisol!

Well I have some big Cushing's News coming up that I want to share in my next blog. It's still in the works. I am really excited about it! If you haven't already, please comment and keep the converstation going!! Here's my moon face again =]

My 2013 Video

Here's my updated 2014 video:

MY RELATIVES HAVE ADRENAL TUMORS!

WOW So my mom told me a few weeks ago that she has a cousin named Mai in Vietnam who had an adrenal tumor. I was in disbelief since this is supposedly a "rare" tumor but someone in my bloodline has one too. I was curious to know more so I asked for my mom's cousins contact and wrote to her. She then responds to me a week later to confirm that she did indeed have a adrenal tumor. Due to the language barrier it was hard to communicate but from what She told me she did not have Cushing's Syndome but another syndrome called Pheocromocytoma  Syndrome. Her first surgery was unsuccessful but her second time was a success because they removed the whole gland with tumor. Ans she does not have to take Steroids since it is not like Adrenal insuffiency.. It was very hard to think that we have a connection. Upon discovering this crazy crazy revelation, Mai mentions that her cousin (Nancee) from California also has an adrenal tumor and Cushing's Syndrome and was diagnosed this year and had her surgery in April... What.... Another distant relative from my mom's side has an adrenal tumor AND Cushing's?? This is so hard to believe yet an amazing discovery.. I then was more curious to speak to Nancee and waited to get into contact with her.

Another week passes by and Nancee responds. She also confirms that she has an adrenal tumor and Cushing's syndrome. She is 42 and has had Cushings for about 6 years and had her surgery this April. Her symptoms are classic CD symptoms much like mines and now in recovery. Just like ours, her recovery is rough mostly with the depression and body pain. We then relate to our bad experiences with most doctors and endos who have not treated adrenal patients and are usually baffled by our cases.

I just can't seem to put together this fact that two of my distant relatives had the adrenal tumors and all this time I believed that it was a rare tumor that only affects a 2 out of a million people. We know that not all families get Adrenal/ Pit tumors or have CD but what about the ones that do? What is the connection? Why do endos, text books and online research claim that Cushing's is an isolated disease when now there is evidence that it does happen to family members. Just like the other story I posted about the brother and sister who both had CD? Now It's more evidence to support this theory and for us to believe that Cushing's is not isolated and very much prevalent.

 FORGET WHAT THE DOCTORS, INTERNET AND TEXTBOOKS TELL YOU. How is this possible??? I will try to investigate.

My Hair Has Been Electrocuted

Hello! Sorry it's been a while since my last entry but I just wanted to talk about our physical appearance during Cushing's Disease (CD) and going through Adrenal Insufficiency (AI) As all of you patient's know. The physical changes are so severe that even the most confident person would feel insecure. I want to talk about hair this time.

I've been trying to grow my hair out since my last haircut a few months ago. Lately I have been distracted examining my hair. For the past few weeks I have been noticing another change in my hair texture. When I had CD my hair was falling out, I had some bald patches in the front and overall was thinning. It was oily so It was still soft and shiny though it was very thin. I noticed that after surgery, My hair started to regrow and fill in the bald patches however the new hair growing in is very course, dry and rough in texture. It is still fairly thin as my ponytail is a measly half fistful and now it looks dead and dull. I traded the balding for courser crinkly hair. I am not sure how I feel about this, other than I am completely distracted with how it feels. Almost like I've been electrocuted lol

A bit worried, I talked to my friend and she confirmed that the hair issues are from steroids and possibly AI. And her hair improved when fully tapering off. I hope in time my hair will start growing in better and healthier. Not only are we plagued with waiting for our health to get back but we have to be patient for our appearance to get normal. But Don't worry about it Cushies! Worst case scenario is that we could shave it all off lol just kidding >.<

As my lesson in health and recovery continues, I realize that the best way to get through these changes is to let go of our attachments to things in our life such as the past, the way we use to look, anger towards things we cannot change, material items and the way other people view us. Yeah that's a hard pill to swallow being a 25 year old girl/woman who is vain as the mortal version of a Kardashian. But I must remember that things were worse and now getting better. I almost forget that while comparing old photos pre CD, I look better now because I have some kind of inner self esteem I discovered during this whole process. It helps me to feel comfortable in my own skin and accept myself regardless of how I look. It kind of just radiates and people seem to approach and say hi to me. Unlike before people seemed to stare at me for the way I was dressed or the ridiculous amount of eyeshadow I wore lol OR maybe, it's because I seem happier :D