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, one in my right forearm, one in my lower back and one in my knee. I've had 5 shoulder surgeries and the tumors just keep coming back full force. I had brain surgery June 14th this year. They removed a ependymoma grade 2 tumor from my front temporal lobe. To say the least, these past 2 years have sucked. It's hard because people ask me how am I doing and I just smile and say I'm fine, but in actuality I'm in constant pain. I don't want to lie or sound like I don't want to talk about what's going on, because I do, but i just don't want to be the debbie downer. I don't want to be the person thats like " O I am always hurting and feels like a lightening storm is going off in my body. I'm losing control over my right hand and dropping things and I can't paint because it hurts to hold a pen or a paintbrush. 👍🏽 I'm great! Thanks for asking." I don't want to be that person. So I just put on the smile and say "I'm fine". But it comes across as I don't want to tell people what's happening but I do. They just ask when we're out having fun and it's rare for me to be able to go out and not eventually have to leave because the pain gets so bad I need to go home and take my medication. So by doing this blog hopefully I can shed light on what's happening to me and maybe give someone out there some comfort in knowing they are not alone.

     Chris and I are going to Seattle tomorrow to meet with Neurofibromatosis specialists. Here in Dallas I've had to make my own "team" of doctors and its been very difficult. They don't talk to each other and I'm the middle man communicating between them. Up in Seattle its a whole team that work together to make a game plan for their patients. I'm very hopeful that we can come up with a treatment plan for myself because I can't continue to live like this. I rarely get 4 hours of sleep straight. It's a sparatic sleep pattern and I've literally tried everything to help sleep. The pain just keeps waking me up at night and sometimes doesn't allow me to fall back to sleep. It's hard too because the things I use to love to do like yoga, painting, dog training and so much more, hurts me now. So I'm trying to find that sweet spot where I can still do some of the things I love without pushing to the pain. But its a crapshoot game because somethings so small hurt. I can't even open up bottles anymore which sucks because I feel so weak now, I use to be so strong and was very proud of my physical strength. Even high fives kill me! Its rough when you go out in public and base which side of the sidewalk you're going to walk so some stranger doesn't hit my bad shoulder or sit a certain way so someone doesn't grab where a tumor is in my shoulder or arm. When someone does, it feels like I'm being stabbed with searing lightening. I suck it up and grit my teeth so I don't come across as a pansy. I know its silly but it's hard to explain to someone what just happened. Sometimes they do grab that wrong spot and takes me to my knees....that really blows because you can tell they are so confused and feel so bad. This disease just sucks majorly. I received an email from the lady I've been in contact with at the Seattle's Neurofibromatosis Foundation. Her name is Cheri and she has been so helpful. In one of the emails she said that I'm not alone and there are people in my corner and I don't have to fight this battle alone. It was so nice to hear that. I know I'm not alone, I have my husband and friends and family but it was nice to be reminded I'm not alone. There are sometimes the pain is so bad it takes hold and clouds my thinking. I start to think I'm going to be in this pain for the rest of my life and I can't do that or that I must have been a terrible person to deserve this type of torture. I know thats being dramatic but when you're in the darkest of your pain all rationality leaves. Sometimes you just need that lil reminder that you're not alone and what your feeling is ok and that you are loved. So I hope my message reaches someone else who is going through this or through any type of pain whether that be physical or emotional, you are not alone. Someone does care and this too shall pass. You are strong enough to get through this and in those moments of weakness someone is there to catch you and help you up. Please know you are loved, even if I don't know you I love you. I admire anyone who has the strength and courage to get through, even if its for a moment, their pain. Stay strong and there is a light in the darkness.