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 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.
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.
So I read Big Magic with the Brave love Book club because it was actually one of my goals this month to read 4 books. Well I didn’t make 4 but I did read 2. So that is an improvement from last year and hardly reading any books.
Oh k so back to the book.
The main thing i learned is that you don’t need permission to create , just being alive is enough to allow you to create. This is the truth that hit me like a ton of bricks. I have been wanting to blog and write and do all these things but I didn’t feel like i was enough and good enough. And my word of the year is “YES” , i decided it back in January but wasn’t brave enough to post onto my blog.
Another topic I found interesting was how she talked about her relationship to fear. She acknowledged it and said it can come along for the ride but it will not be making any decisions.
“ Your fear will always be triggered by your creativity, because creativity asks you to enter into a realm of uncertain outcome, and fear hates uncertain outcome.” – Big Magic, 23
She basically summed up how i want to live this year, and forever as one without fear. Fear is what holds you back from creating. It holds you back from a lot of good things in life. She also talks about curiosity and how it is better than passion because there is less to live up to. It hit me again, if you have a inkling of wonder go after it and see where it goes. It’s also another reason i am finally writing in my blog. Being curious made so much sense was how one should try to curious instead of waiting for inspiration to strike. If you wait for inspiration you may waiting a long time because you don’t know when it will , only that you need to be ready when it does. Because why the heck not.
“I don’t want to be afraid of bright colors, or new sounds, or big love, or risky decisions, or strange experiences, or weird endeavors, or sudden changes, or even failure.”
“A creative life is an amplified life. It’s a bigger life, a happier life, an expanded life, and a hell of a lot more interesting life. Living in this manner—continually and stubbornly bringing forth the jewels that are hidden within you—is a fine art, in and of itself.”
She gave me inspiration that i need in a time where life is hard, well its hard because of #spoonieproblems. Thank you Bailey for starting this book club and keeping me accountable.Its something that has helped me for the better.
First, My Lilly Wishlist:
|Pink Tusk in the Sun Delia Dress|
|Pack Your Trunk Elsa|
|Toucan Play Marlowe Dress|
And now for the Not Lilly Stuff…………….. First Off A prayer journal by valmariepaper
To remind to that I am my own worst enemy. Its not others who have a tendency to question your ability, It is yourself. So stop overthinking it , second guessing yourself and just do it.
|To Inspire Me
Its easy to forget this and judge people prematurely not only that we all have days in which we all believe we are bad, But we must remember we are what we decide to act on.
INTJ , Me in a nutshell,