I am your not so average 22 year old battling Mitochondrial Disease, Gastroparesis, POTS, Epilepsy, MCAS, brain injury, and several other chronic illnesses. These are my thoughts on what it's like to be a young adult fighting several life-limiting diseases.
Saturday, April 27, 2013
Loosing a Friend
I never thought one of my friends would die. I mean I know we are all sick but everyone has been doing okay or so I thought. A girl named Alex followed me on Instagram when I first got my feeding tube. I think it was because she also had a tube at the point. I followed back and we talked for a little bit. We continued to follow each other and talked a little more but soon that faded away and I found new people to talk to as well and she just carried on like normal. Alex had been sick in the hospital for about 2 weeks and yesterday in the early morning hours Alex left the world. She told everyone she was doing okay and not to worry about her but she wasn't. She was a great girl an amazing poet. Alex lost her battle with Cystic Fibrosis. Cystic Fibrosis is a lung-digestive disease. She always had a smile on her face no matter what she was going through and most people can't do that. Before you even know her story you would fall in love with her. It's hard to think about how she's gone and maybe we could have talked a little bit more but we didn't and that's okay. One day it could be me or anyone another one of my close friends who passes away because of their illness and it is kind of scary to think that way. Alex passing opened my eyes and some of my friend's lives. We all knew we were okay but are we really. Yes we are sick teens and we are doing okay but that's what we thought about Alex and she wasn't. Please pray for me, Alex's family, and anyone else who was touched by Alex at one point or another. Her Instagram user name and motto is Every Breath Counts. I'm glad she made every breath count. Now she can breathe freely in Heaven. I'll see you again beautiful angel.
Friday, April 19, 2013
Surgery Has Been Moved
At first, we had surgery scheduled for the 22nd of May but we had to cancel because my End of Course test for English is on the same day! They did however have a cancellation for May the 15th so we are taking that one. I have to miss a soccer tournament which is kind of upsetting. I was promised that I would be okay and well enough for confirmation 4 days later. Mom says I probably won't feel up to much though. So I'll be there for the service and go home more than likely. Anyway, that's the update for now.
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