Especially Not Like This

So much stuff. What's the goddamned point?

Stuff everywhere. Stuff, stuff, stuff. 

I've got to get more stuff to store the other stuff. Why? It doesn't even make sense.

Half the stuff goes unused while a quarter of it gets some action, but the other quarter you forgot about because it's stuffed in a drawer somewhere.

Why do I have so much stuff?

Right now I don't give a fuck about this stuff. Right now my spleen and liver are enlarged and I've got another hernia somewhere in my gut. It's suspected that I have this rare, genetic blood disease called Porphyria—which type, I'm not sure yet. My doctor isn't sure. But I need to fly down to Miami, Florida to be diagnosed (or hopefully ruled out, although that will just put us in another arena of test, test, tests) and start treatment.

There's no cure for Porphyria.

The sun will always hurt my flesh, I'll always have abdominal pain, I'll always have to stay away from stresses and triggers—whether good or bad. It's a death sentence that you may never die from. It'll sure make you want to die, though.

But I can't. I won't.

I'm not going to miss the best parts of my children's lives like my mother did. I'm going to be there at their hopefully indoor weddings, if they choose to get married, of course.

I'm going to be in the waiting room, respecting their privacy when their children are born, if they choose to have families, that is.

I'm going to be decked out in ultraviolet protective clothing with an obnoxiously large umbrella to block out the sun at their graduations.

I'm going to be there, even if it kills me.

We don't yet know what's actually happening inside my body, but when we do, I'll do everything I can to live and live as well as possible.

I don't want to die. Especially not like this.

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I'm Sara. Mompreneur of 3, wife to super-awesome Brian, business coach, infopreneur and printable product creator.