Word of the Year

2016 Word of the year – YES YES YES

If you saw my post on Big Magic: Creative Living Beyond Fear by Elizabeth Gilbert, you have seen how i stumbled upon my word of the year, ok maybe not stumbled but got reaffirmed it was my word.

I had been thinking about what I wanted to do this year, what I wanted to accomplish. I did so by using Powersheets and just plain dreaming. This has also been a hard time medically so I have been low on both inspiration, energy and just a general blah feeling. 
Two Words: SHONDA RHIMES 
I am big #TGIT fan. My favorite is #Scandal and I like #HowToGetAwayWithMurder. Basically Scandal inspires me in my dream of wanting to get to Washington DC to affect people that have rare diseases that no one has heard of. 
AND I LOVE TED TALKS 

And she also has a book by the same name

Year of Yes: How to Dance It Out, Stand In the Sun and Be Your Own Person 

It is also my word of the year because I have let fear run my life and I am tired of being in this blah feeling. I have been afraid of doing it and have been just making plans and not acting on those plans , and I didn’t like how ACT sounded. 

Rare Disease Day 2016

I bet you haven’t heard of Rare Disease Day, that’s OK because i am going to tell you all about it and what make me RARE. And this post is not sponsored in any way , I just feel really strongly about today. 

What is a Rare Disease ? 
A Rare Disease is a disease that affects less than 200,000 people in the US 


Why is this so important to me ?
I have a Rare Blood Disorder. It is called Diamond Black Fann Anemia, DBA for short. It is something i have had my entire life. There are only two ways to treat it either by steroids, prednisone, or by chronic blood transfusions. Most of my life it has been pretty well handled until a couple of years ago.

I was on chronic steroids for 18 years and just recently switched to chronic blood transfusion , because believe it or not the side effects are mostly less. All of that being said it is important to me that rare diseases get their time in the spotlight per se. I know not a lot of people know about DBA and now one of my goals is to get it out there along with the importance of giving blood. There are lots more like me who need blood every 3-6 weeks in order to live, actually around 500 people in the US.

I won the genetic lottery.
So heres to all the #spoonies and #chronicillness people I have decided to use my blog to talk about my everyday life, and that inevitably will include stuff about DBA.
I am #DBAstrong


This is one of my Awesome DBA friends. She is telling you what DBA is. enjoy.

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