Friday, August 26, 2011

Teenage Dream--NOT!

My name is Ashley Jenkins and until October 2009 the only sicknesses I ever had were asthma and allergies. I went on a Class trip in 8th grade and came back with a virus, which we think was swine flu. A lot of my friends had it too but when they all got better I didn't. My family doctor, Dr. Waters, was and continues to be amazing through all this.
In January 2010 my gallbladder was removed, relieving my constant pain. Until that point I had a GI Specialist who endlessly accused me of having an eating disorder. It was so discouraging. He decided to send me to a head doctor and when the Psychologist said I didn't have an ED, the GI Doc didn't even believe him! Then members of my family started to believe him and say " why don't you just eat?" This was the worst on me, how could some of my family even think that! One day one of them asked me what I thought of my body and since I knew where they were going with the question I simply told them I looked pretty darn hot to be sure! That shut them up for the time! :)
Sorry if any boys are reading this; to keep my sanity throughout this whole ordeal I had to find a funny thing to keep my spirits up, since nearly every time I go to the Doc, I get a pregnancy test I've began to come up with funny way to tell them I'm not pregnant. Such as, "Are you kidding!?! The boys at my school are gross!" or " Well, my momma's with me pretty much all the time, so I think she'd know." The nurses seem to like it and it gives us something to think about when I can't sleep some nights.
After the Gallbladder surgery I was finally referred to Dr. DiLorenzo, he turned out to be my saving grace. In January 2011, I was finally diagnosed with Gastroparesis. Dr.D immediately sent me up to see Dr. Teich about the Gastric Pacemaker. We had planed to have the pacer inserted immediately but insurance had other ideas. Insurance denied the pacer and while we waited for our appeal to go through I continued losing weight. During that more ED rumors went about at school and if people weren't spreading eati
G disorder rumors people were telling me how lucky I was go be so skinny! Even my principal said, "oh Ashley, if only we all had your problem." as much as that upset me it upset my momma even more so she set my principal straight on that. When I got to my lowest point of 88 pounds they decided to surgically place a GJ tube. While that was getting placed I had wonderful friends and family mailing tons of letters to the insurance company about how much I needed the pacer. Soon after the feeding tube placement, they approved the Temporary Pacer. When I finally came out of the anesthetic, for the first time in over a year, I wasn't constantly nauseous! It was amazing! March 7, 2011 my permanent gastric pacemaker was placed. Since the insurance company waited so long to approve it, I got a complication, SMA syndrome. Because of that I had to get a PICC line for IV nutrition and spend another 3 weeks in the hospital. During that 3 weeks the ED accusation was back, a child life specialist came into my hospital room to talk to me. She asked what the line in my arm was for. I told her it was my PICC line and we would have TPN go through it so I would gain weight. She jumped on the chance to ask how I felt about gaining weight, and I said, " Quite frankly I can't wait I am far too skinny!" again I shut her up, haha. Honestly how can I have an eating disorder? I spend at least an hour a day figuring out what food I'm gonna eat that is easiest for me to digest and will get me the highest calories.
I am now 15 years old, I still have my PICC line, have to take multiple pills to manage problems and I still struggle with my GP but I know for a fact things could be SO much worse! I havent been to school since Feburary 4, 2011 and now I get to go back for my Sophomore year! I'm really excited for that too, I'm just slightly worried that people won't understand gastroparesis and just chalk it up to an eating disorder yet again. But you gotta try, and if they dont believe me I've learned not to care. Just gotta keep up hope that someday they will!

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