Cushing's Disease: friend

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

Alright I'll admit I've been bad since my last entry.. I got curious to how I would do on a lower dose of steroids and self experimented. I took 27mg umm let's just say I didn't do too well. Yes I'm stubborn lol, although I'm not dying so I think I can handle it. I'll just keep it that way til the next visit to the docs which is in a month or so? Supposedly the magic number to stimulate the adrenal gland is 12-15 mg. I still have a long way to taper down... I think I might be feeling better? I see some improvement on some things and less in others. I guess I need to feel or see a huge difference to believe it but I am now livin life in the slow lane lol. We had some unexpected house guests this week.. lol

Vankey, Fatty & ^^Tiny

Ever since the operation I haven't been feeling well or keeping track of the days going by. Yesterday there was a knock on the door I thought it was some delievery package and it was my best gal Jessica holding some beautiful flowers. I forgot we planned months ago that she would come back one last time from Maryland to visit and I even wrote it down on my memo. Blame it on the short term memory! lol.. This will be the last time I see her for a while since she's in the airforce and will be relocating to Korea then Japan. I wanted to make a little memorabilia collage for her and found some old pictures of us through the years. Looking back at old photos is funny, I looked so dorky in the homecoming picture and what was I thinking going so blonde!! lol x]