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My Sma Story

Well this all started a few years ago. Apparently some of my arteries constricted the duodenum, due to being to thin. All my life I have been made fun of for being "anerexic" i was always "bones" "twiggy" or "the skinny girl" no matter how hard I try, I still have problems gaining weight. The first time I went to the hospital I was so scared. The pain in my stomach was unbearable and I literally wanted to die. It took the doctors a long time to find out what was wrong with me, they were very surprised when they saw I had SMA. Over the next 2 months in the hospital, I was trying to hold down Boost (Nutritional Drink). Every time I drank it i would throw up, and then be in the worst stomach pain of my life.. Continiously throwing up for the rest of the day until I finally fell asleep. Then the tube process started.. Ive had so many NJ tubes placed I cant even count. After my tortured 2 months in the hospital, they sent me home... ON MY NJ TUBE. I had my Kangaroo Joey in a backpack with me wherever I went.. Constantly pumping formula into me.. I would cry every time I saw food. I was SOOO hungry, but I knew I couldnt eat for if I did the pain would come back. Kids stared at me in public. Almost EVERYONE had a question to ask about the tube coming out of my nose that lead to the backpack I was wearing on my back. It was humiliating. Eventually I was at 97 pounds. (I am 5'7'' and have never weighed over 100 pounds.) I was off the feedings and free! A few weeks later it happened again, and again, and again. The last time I was there.. was the miracle.. I was so depressed.. And eventually I thought to myself " id rather die than live in here". So I went to the bathroom, pulled out my iv and NJ tube, and ran out. When I finally got home my mom saw me and started to cry.. Apparently 5 minutes before I left the nurse had called her and said she thought I wasnt going to survive, that she might loose me. That night I prayed with everything I had "GOD, If your really up there please help me, please let me eat and be okay, I promise to take care of my body, please GOD please." The next morning I ate some oatmeal and held it down. It was a serious miracle. I have been sick with this problem since then, but ive never had to go back to the hospital. When I get sick, yeah I still throw up and deal with the excruciating pain for a day. But when I wake up the next day I start on soft foods and work my way up. I have never met anyone with my horrifying condition. I would never wish that kind of pain even on my worst enemy. Thank you for reading my story.
GettingStronger1994 GettingStronger1994 18-21, F 2 Responses Jul 21, 2012

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I'm surprised that you are accepting living like that. I have it, also, currently with an NG tube. I refuse to accept that this is the best it's going to get. I want my life back. I can't go on much longer without knowing that I'll be healthy again. Good luck. Oxox

Wow, sweety I a SOOO proud of you!!! I have just been diagnosed, but mine is no where near as bad. I send you so much love and support!! If you ever want to meet someone with it, I'd be happy to oblige! They should hold a conference once a year where we could all go and meet each other!! We are not alone luv bug!!!