Toes, sand, shells, beach wheelchairs, waves with my waves mask on.. enjoyed myself… And now as I sit writing this from the ER I think about how blessed I am to be able to go to the beach, these diseases don’t take vacationsOr days off.. you live in a world of never knowing what is going happen next… over the course of 17 months I’ve been in three Comas, used over 200 epipens, been diagnosed with a lot of diseases, I’ve been on lifesupport six times. I’ve had four NJ tubes (feeding tube that goes up your nose and down your throat to your small intestines), I have had five central lines, have had sepsis, have had to had breast tissue due to my double luman port being infiltrated (a central line in your Chest) I spent almost 7 weeks in the hospital and during that put on an epi drip, if I made it out alive then they’d be studded. My diseases have no course of action they take and it can kill you in one Moment.
But laughing at the seaguls, standing by the waves held up only by my parents. My parents had no idea what they had signed up for when I was born, I was sick from the getgo and slowly over time got worse and worse. I miss Stephie I miss Nick. I miss Rory. I miss va beach, sadly some specialist for some of my diseases are located in NC so we moved here. My health might control my body but I control how I handle my failing body. I don’t see this as starting over I see it as just going on.
The sand, the waves, the beach and all he beauty I need… the hospital isn’t where I wanted to spend my time.
But overall I’m grateful, Beaufort Nc you now have a human in your town with rare diseases and lives a rare life. Mask and central lines might be seen at all times…. but they keep me alive…
Even if the day ends at the hospital, it doesn’t mean it ended badly, or that everything is over. I’m doing everything for my failing body, and I’m strong enough to do this because I’m willingly to know when I need help.
Just keep going…. just keep going
Shayweasel feels blessed