Not all who wander are lost

       I’m excited to say that I'm branching out to other outlets, that way I can reach a bigger audience, and hopefully in turn help more people. I watched a TedTalk that was the catalyst for the change, and for the way I view my life, and the way I see my pain.  I love TedTalk’s, and love how they help you see different viewpoints and beliefs. If you need to find an out-of-the-box solution, watch a TedTalk. Anyways,  I watched a Talk about finding purpose in life.  The lady talked about how we should be focusing on finding our purpose and not just finding happiness. She spoke about when you find your purpose in life, you find your happiness. After watching it I got a little upset. I thought, what the fuck is my purpose in life? I’m not able to do things that are purposeful or that make a difference in the world.        Then it hit me, I’m looking at my disease and pain as a burden, and almost like a life sentence; which in essence my disease is a life sentence. But I can ch

        I'm so nervous! Chris and I are heading to Texas for a family reunion/wedding in a few weeks. Since just riding in a car causes shooting pain up my back, into my neck and left shoulder, I'm dreading having to not only get to the airport but getting to the gate, and then the airplane trip itself. God, I hate this disease. I use to LOVE traveling, I guess you could have called me a restless soul; now I am absolutely terrified. I feel like I am always having a slap of reality hit me when situations arise that I use to enjoy, now I fear doing. It sucks because then I have to go through what I call, "mourning my past self process." I allow myself to cry and grieve for the loss of who I use to be and the things I use to do, then I give myself a badass pep talk. I channel my inner Ice Cube; if you are not familiar with this gentleman, he's one of the all-time-best rappers of our age. He's also a badass! I would hate to be on the wrong side of Ice Cube....t

            Hi, I know it’s been a little bit! I had surgery on April 12 to remove the tumor from my right forearm. It was a successful surgery, they were able to remove the entire tumor! This was by far the best surgery I have ever had. Dr. Ko at UW neurosurgery changed my life for the better, he was able to alleviate some of my pain. I no longer have the shooting, searing pain in my hand, it’s just numb; I will take numb over excruciating pain any day! Now to fix my left shoulder, back, and knee….or how about a cure so I can stop growing these painful, asshole tumors! Dr. Ko has told me many times now that he won’t do surgery on my shoulder, too many tumors, and can’t guarantee which one is causing the pain. He also stated he will not chop off my shoulder, even with pleading. So I am on the hunt to find other methods to either get ride of these tumors, or at least something to help with my pain.  I met with a radio-oncologist at Providence Hospital this past week to discuss th

I’ve been having a really hard time lately and I am needing to express what’s going on to expel these feelings/thought. I’m not writing this to get sympathy or praise, nothing like that. I actually refrain from saying some things because they are such raw emotions. But I realized by not writing them out I’m not being genuine.  I started writing to help me work through this fucking disease, and to be a positive outlet for my creative mind. By not expressing myself, I am not being true to myself. So if you really empathize or feel compassion for me, please feel free to share; but if you are just saying “kind” words because you feel obligated, please keep it to yourself. I’m writing these raw and dark emotions not just for myself but hopefully show other people out there that they are not alone. Maybe they’re like me and don’t like to ask for help, or call someone to open your soul to; being so open and vulnerable with someone is scary. I’m learning to lean on my loved ones, it’s stil

They say write what you know. Weeelll I don’t know much, but I know a whole lot of nothing lol. I’ve worked all sorts of jobs, and lived all over; you could say I was a restless soul. The worst job I had was either working at a movie theater, or customer service. The theater job was just a glorified janitor; definitely made me appreciate janitors, and is now why I thank them if I see them in the bathrooms. I know that may seem weird to some, but such a simple gesture of gratitude does brighten someone’s day. I don’t say thank you as I’m waiting inline or anything like that, like a weirdo. I do my business, wash my hands and as I am walking out, I say thank you. It’s like a drive by thank you lol. The job did have some perks though, got to see movies for free. I remember when The Prisoner of Azkaban came out, I got to see it before all my friends and family…Balla shot calla! Haha so baller to see Harry Potter first, but hey, I freaking love HP! Anyways, I’ve worked a variety of custome

It’s been quite an adventurous few weeks! I met with my neurosurgeon and he thinks we need to take out the tumor in my forearm. The tumor has grown a little bit and it’s showing us it will continue to grow. So we decided to get the surgery now when the tumor is still small. It’s a mix of emotions for me though; this will be my 7 th surgery. I am so sick of being cut open and drugged up because if this shit disease.   I honestly don’t understand how people electively get plastic surgery over and over again. It’s exhausting being under the knife. But I am so tired of this pain. Sometimes I wake up in the middle of the night and I am biting my pointer finger, like a fucking dog. The pain will be so bad that my asleep self will try and stop the pain before I wake up, by biting; that’s just weird. I’m at a point where I can’t stand it anymore; I’m tired of being in constant pain. So the thought of some relief for a bit of time, until the bastard grows back, sounds nice. I know the tumor w

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

      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