Not all who wander are lost

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 ...

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 tum...

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...

      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...

          I think it's definitely time for an update on whats been happening. Chris' and I started our move right after Christmas. We had a tight deadline to get up to Seattle, Chris had to be at his new office on January 5th. So we packed up our car with the 3 pups and made the trek up to Seattle. Chris' work was a huge help too because they helped move our furniture! We are so grateful for them! We finally made it up to Seattle after a 4 day car drive. The trip wasn't bad at all and the dogs were troopers. We've been here for 4 months now and seen all types of weather from snow to beautiful clear blue skies! We live in a small town outside of Seattle in the forest and it is the best place ever. Chris and I still can't believe we live somewhere so amazing. We take our pups out to the woods and go exploring with them as much as possible. We've found a few gems next to a river and its only 15 minutes away from our house. We have a hiking trail only 3 miles fr...

 Its 2 am and I can't sleep because I hurt like a mofo but I have a whirlwind of emotions swirling around in me. Chris and I are moving to Seattle. We've decided that it will be the best option for not only myself but all of us as a family. I'll be able to receive the proper medical care and we'll be in a state that actually fits our lifestyle and aspirations. Chris and I are very outdoorsy and love animals and nature. We're happier with that in our lives so Seattle is the best all around choice. Now after my surgeries I won't have to be locked up inside because I'm not allowed to overheat myself like here in Texas. Up there, its nice and cool and I'll be able to venture out and enjoy the outdoors. I am so excited to finally be leaving Texas but also getting the help I require for the rest of my life. Its hard coming to terms that I will be getting surgeries for the rest of my life. But that is my reality and I need to think realistically and what will h...