#DBA

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.

Monday Motivation

This hit right in the feels. It applies to everything i have been felt like i have been told to say yes and just do it. My word of the year is ” YES” Yes i am going to write this blog even though i am kinda afraid to put my writing out there. And then there is Shonda Rhimes  ” The Year Of YES” just came out and she just had a TED TALK.  

Blogtember Challenge- Currently

Currently 

Reading: Game of Thrones, Just Rise Up
  
Watching: #ULMvUGA
Listening to: Influencnet Classes, #fireworkpeople Your Inner Fire Course
Eating: All the chocolate, all the coffee , and all the pumpkin stuff
Writing: #blogtember posts ahead of time ……so that I can stay on top of it, and hopefully get a blog plan/schedule that works for me.
Dreaming: About Lots of Things; from this blog and it’s a future, to going to grad school , lots of big dreams I am not sure what or how they will work
Calling: All the doctors Offices. #spoonieprobs #DiamondBlackFannAnemia #chronicillnessporblems
Trying: To get on a normal sleep schedule , little by little to make my dreams happen. Starting with blogging more.
Texting: My #DBA friend. Sometimes all you need is someone who understands completely. When you have an orphan / rare disease that is hard to come by.
Thanking: My parents for helping me through this and understanding
.
Pinning: pumpkin spice everything #noshame #fallishere #basic #whatever
Thinking: about so much  but mostly about how to keep on dreaming and trying to remember God is in control
Loving: All these storms we are getting. I love watching them and it makes falling asleep all that much easier.
Ordering:Nothing else because I am on  a #nospendspetmeber. Right now I’ve just ordered an agenda because I need on for the new year.  
Starting: my #powersheets for a second time and having much better time actually working on my goals……. Including Blogging more.
Considering: The limits that #DBA puts on me and how to still be a fully functioning adult without pushing those limits

Going: to a state park and enjoying nature.
Discovering: That it is so much easier than I thought to write and just get my thoughts on paper, it doesn’t even have to end up in a blog post. Being vulnerable to myself is worth it. Oh and I also like learning to Code. Who would’ve thought?
Feeling: blah, not like myself but better than I have in previous months
Hoping For: an answer to why I have been not feeling good. Its not good when you have stumped four doctors.
Tweeting: #fireworkpeople and trying to get involved with more twitter parties.
   
Drinking: Coffee, and more coffee.

Learning: how to code, blogging and about being more vulnerable to myself and others.
Taking Action on: the #blogtember challenge and learning how to code. And reading more
Cleaning: my closet and my room so that it can get painted and have a new floor put in. Well kinda doing this.
Praying: for all my DBA friends, that doctors figure out what is wrong with me and my family.

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