Thursday, August 20, 2015

Sicker Than Your Average

It hit me yesterday...It hit me like a ton of bricks. Life isn't supposed to be like this. I had a procedure done at the adult hospital yesterday and everyone kept calling me baby or sweetie. I hate those words. In the South it' s most often seen as "southern hospitality" but I didn't see it like that. It makes me feel like I am five years old again but then when I look around the waiting room I realize I am the baby. I am the odd one out. I am sure they thought in their heads what I was even doing their in the first place. In their eyes they would just hope and assume that it was actually an appointment for my mother. We all know that when there is something that's hard to talk about like kids and teenagers being sick people just turn the other cheek because if they think that they don't see it that it doesn't exist. However, that's just not the case.
Most of the people in the waiting room were roughly thirty or forty years older than me. Their bodies are broken down by age. My body is only broken down by who knows what reason to be honest. There isn't a reason when you think about it. There's no reason a teenager much less a child should be sick. At seventeen I have seen the inside of hospitals more than I have been at my own high school. My senior year of high school started this week. We are three days in and I have spent more time out of school at the hospital, doctor's office or laying in bed trying to ease the pain. This was supposed to be my year but sadly it hasn't worked out that way yet. Being called a "baby" was yet another reminder that my life shouldn't be this way. It's another reminder of something that sets me apart from everyone else. I guess I am just sicker than your average...

Tuesday, August 4, 2015

The Positive Aspects of Social Media

There is a positive that goes along with every negative. Social media is used to connect with people, friends, and family that are located all over the world without having to hop on a plane to see what's going on in their life. We have to remember the dangers of spam, overuse, hackers, and connecting with strangers who might be lying about their about various different things such as age, identity, location, and much other personal information. However, I see a different side of social media that many others never could understand. It's a side that connects people over one simple common denominator. We all have this one thing that makes us best friends almost instantaneously. I have been diagnosed with Mitochondrial Disease and a long list of other diagnoses stemming from most every part in my body. Through social media I have been blessed to be connected to several people who also have Mitochondrial Disease or other similar illnesses.

Everyday I get to chat with people from all over the world from places like Australia, New Zealand, London, Spain, Canada, but also people right here in the states. There are no longer moments where I feel isolated and alone because my friends in the "real world" don't understand how hard it is to fight a loosing battle day in and day out. In the different online support groups we can talk about our struggles, clinical trials, and give suggestions as to what has worked for us in hopes that it will benefit the others reading the comment.
You always hear so many bad stories about the dangers of social media but rarely we ever hear the amazing stories that have allowed people to come together because of social media.
About three years ago I started becoming active within the chronic illness community in the online support groups available. I met a girl named Chrissy who has Trigeminal Neuralgia. She is two years older than me and lives in Canada. At first we weren't sure if would even wind up being good friends but three years later we have become closer than I could have ever imagined!

"We make two halves of a whole idiot."

I was still mostly undiagnosed at the time I met Chrissy. Chrissy introduced me to a woman named Brynn who is three years older than myself. We instantly hit it off! Her symptoms and diagnosis was very similar to some of the issues I was having at the time. Just days after meeting her she had posted a photo on Instagram and the location was tagged to the hospital I also go to. I freaked out and little did we know we only live 45 minutes apart. Chrissy in Canada gave me an amazing friend who happened to live in the next town over. I met Brynn at the mall two months later. The three of us are now inseparable!

Just this last week Chrissy flew down to meet me for the very first time. I finally got to hug my best friend in person and that was the best feeling ever!

During the time Chrissy spent here we were also able to get a picture of three of us all together! The laughter and happiness in the room was amazing! The three of us with feeding tubes, scars, and central lines have one big battle that we've had to face for years now but because of the two of them make my battle is a little bit easier. Without social media I would probably be depressed and feeling so alone because no one is able to understand but thanks to these connections such as Facebook, Skype, Instagram, Kik, and Twitter we are able to see that we aren't alone and there are literally thousands out there fighting similar battles!

Left to Right: Chrssy, Michaela (myself), and Brynn