Welcome. Welcome to my journey.

Welcome to my pain.

Welcome to my life.
I’m using this blog as a sort of relief. Relief of this damn condition, possibly. You see, when you’re diagnosed with a rare disease, they forget to mention how alone you’ll feel. How no one would ever understand how you feel, what pain your in, what struggle you have to go through and no I’m not doing this for sympathy. You read if you want to read, you clicked this link because someway, somehow, you may just want to know more. You see, recently watching a famous Netflix show… one of the morals was that you don’t know what people go through. This can be your outlet as well. We hold so much back from the world just to show how strong we are, but you don’t always have to be. I thank you, for visiting, for reading, for taking time out your scheduled day just to read a blog post by someone you may barely even know. This is only the beginning of what may be something small, or something huge. I’ll leave that up to the universe to decide. 

My condition. My oh so rare, one in a million, fucked-me-over condition. (sorry family, if you’re reading this.) I wasn’t born with this.

One day, my body just said.. HEY! Let me just do this and badda boom badda bing, I received Budd-Chiari Syndrome with Myeloproliferative Disease with a Jakk-2 Mutation. 
Yeah, it’s that long.

No, I didn’t make it up.

No, I’m not “contagious.”

Yes, this is literally the shit I’ve had to say to people.
Let’s just say in easier terms, I have three blood clots in my liver, my blood is way too thick for its own good and I can clot anywhere in my body. I was diagnosed in April 2011. But that’s an entirely different and longer story that I will be saving up for my next post. I’m just giving you the basics. Let’s just say, I’m always tired, always sick, and I’m always in pain. 🤷🏼‍♀️ 

You’ll get to know more as time goes on. How I got it, how they diagnosed me, and whatever.

But for right now, I think I’ll leave this here as the first. 
Thanks for reading peeps.


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Nina Marie is a 25 year old Bronx native. She has her bachelor's degree in English Literature and she is working on her master's in Early Childhood Education. She has a love of Disney and animals. She was diagnosed with Budd-Chiari Disorder, Myeloproliferative Disease, and a Jakk-2 Mutation at the age of 19. While going through several surgeries and most doctor's appointments, she realized that the best way to get through this hard time was to put it out in the open. Thank You.

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