SISU: determination, bravery, courage, perseverance, strength and resilience.

YOLO. Warning: Super personal info. And swearing.

Life is hard. 
Life was difficult when my second mom (my grandma) died. Life was difficult when I left my church family and I was told by my family that I was going to hell. Life was difficult when I got divorced and my little kids were held away from me against my will for weeks. Life was difficult when I had to file bankruptcy as a result of my divorce and pay thousands of dollars in lawyer fees for years afterwards. 

Life is literally unbearable when you stare the death of your beloved younger sister in the face. My sister was diagnosed with an incurable autoimmune disease called scleroderma. You probably haven’t even heard of it. It’s rare. So not many people have. Here’s the technical definition:

Scleroderma (skleer-oh-DUR-muh) is a group of rare diseases that involve the hardening and tightening of the skin and connective tissues — the fibers that provide the framework and support for your body.

In some people, scleroderma affects only the skin. But in many people, scleroderma also harms structures beyond the skin — such as blood vessels, internal organs and the digestive tract. Signs and symptoms vary, depending on which structures are affected.

But what does it mean? It means my sister is in physical pain. She is figuring out what to do with her bank account and assets and her CHILDREN in her early 30s. Not fuckin fair!! Sorry (not sorry) but I’m mad!!!

I thought I was going to have at least 30 more years with her. But now I don’t even know. No fair!!! And I’m really REALLY fucking PISSED OFF!!! My heart hurts. This is unlike any pain that I’ve felt in my life. 

Why can’t the doctors do a better job of taking care of her? Why can’t the smart people of the world figure out a cure for this? Why does it have to be HER? How much money do WE need to make her better? Is it about money? Because there’s no funding for this disease?? I’m heartbroken. I told her ‘if we have to fly to Germany for a cure then we do that.’ There is not a material ‘thing’ in this world that I would not give up. Not one. 

Thanks for listening. And the morale of the story is YOLO. because really….You do not know how much time you have on earth. Can you please send my sister prayers and good vibes and a f’n miracle? I can’t imagine our world without this love of my life. My sister. She’s me. I’m her.  

If there is ANYONE who knows about this and how to help please contact me right away.

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