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Showing posts from January, 2018

Hello Darkness My Old Friend

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Hello again! It’s been a while since my last blog post and so much has happened. Now that things are settling down since the move to Washington, I need a creative outlet that doesn’t cause immense amount of pain, and hopefully in the process bring some positivity to my life and maybe to others.   Honestly, I just need something productive that distracts my brain from this fucking pain, and not add to it. I’ve written other blog posts from prior years, but this one will be a little different; the topics of the blog will change but the underlying message will stay the same, make a positive change.   If you are not very familiar with my story, allow me to fill you in. P.S. if you already know my story feel free to skip the next 2 paragraphs, my feelings won't be hurt.  I’ve got a pretty shitty disease. Oh, here’s a forewarning, I may cuss in this blog, if you haven’t already noticed. I’ll try and tone it down a bit but this is who I am, and I’m not ashamed of it. I’ve gone thro

My body may be broken but I am strong (older post from my first blog in 2016)

      Hi! I've created this blog to not only help me work through my disease but also provide support and information to others out there and also give my friends and family details about what I go through. I was diagnosed with Neurofibromatosis....I know you're probably going what the heck is neuro-what? It gets better with the names....there are 3 types of neurofibromatosis, NF1, NF2 and Schwannomatosis. I've got the third one....when the doctor told me I've got schwannomatosis he said" You've got the most painful one" well no shit sherlock, I can freaking feel it. Anyways, it's the rarest of the 3 types so not much is known about Schwannomatosis yet, it almost sounds like a made up name to me. Schwannomatosis is a genetic disease that causes tumors to grow throughout my body on my nerves. It feels like lightening is shooting through my body in the places where the tumors are.  Sounds fun doesn't it? I've got a cluster of them in my shoulder