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

 

Sexy Pictures of My Test Results!

Haha jk about the sexy part. Some people like to post sexy "selfies" but I will post bloody test results! Hey, I put hearts to make it sexier lol <3 The blood test results are in and drumroll..... 

 

^^Lol nothing much to see here but last month I was .03 So that is something? Unless it's just residual medication I took the other day prior to drawing blood. Hope not. I was at .03 three months ago.. I get nervous before bloodtests not because of needles but I still feel iffy these days so if my adrenal gland was to normalize I would be dissapointed that "iffy" would be the new normal I have to live with.. But the test confirms the iffy feelings. Still long ways to go. I am feeling better than before so let's keep rolling with the good times & improving. Still got my patience socks on. If that is the only thing I learned from Cushing's then it would be a good lesson of patience. Yeah, for those who have experienced major illness ya'll know that getting sick is only the beginning. Now there are other concerns that are raising up. The doctors told me this would be expected to find underlying problems after since Cushing's masked alot of underlying problems with itself. For example my allergies came back. But that's the least of my worries. Sounds like a sad broken record but I'm sharing my truth and that's what's up.

The dizzy spells are still here. I feel light headed and numbness on my chest and face often. It's worse when I'm hungry or tired. My PCP told me my white blood count (WBC) is low so we are going to investigate.. Health is a tricky little equation..

 
I went to vacation last week and I could not be as active and snorkel or walk too much. But it was still a great winter escape nonetheless. Wish I could stay there forever! I'll post up some pictures next time but I'll preview a real sexy picture down here. =]

Sexy Paradise eh?