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.
Tuesday, February 11, 2014
I'm a Super Tubie
Today is Day 3 of Feeding Tube Awareness Week! My feeding tube has given me my life back! I was able to play soccer with my feeding tube and YES my NG-tube too I played soccer. I can't play right now because of my central line but I will play again! I've connected with so many friends over the last year who also have feeding tubes and it is amazing to see the strength we all carry. I want people to be more aware of feeding tubes because not many people know what they are or they freak out when they learn that I have one and stare at me like I have six heads!! Feeding tubes are NOT scary! My feeding tube only helps me live and thrive! I want people to understand that I can do anything they can do I just can't eat like they can. I want those who are thrown into a situation like mine to be able to understand what a tube is and not be afraid of it. For them to feel like they are not alone and just because they have a tube it isn't an end of the world situation! I don't want anyone to be ashamed of their tube. For me I refuse to be ashamed of something that keeps me alive. You feel weird and different, "not normal" because you have a feeding tube and I hate that we have to feel that way. Everyone needs to be aware!! A feeding tube has given me my life back!! No it doesn't take the disease away it gives me a chance to live a good life with my disease! If you have any questions ever just ask me and I will answer them! :) Happy Feeding Tube Awareness Week! Please raise awareness for me, Tyler, and the many others out there!
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