That One Sick Girl

I am not sure where to begin with what went down today... I guess all I can really say is that I am tired of the way that my hospital works.  It feels like they're constantly playing games with my head and I can't take it anymore.  I don't feel real support coming from my doctors or nurses.  All I really feel is that a lot of them don't believe me and think that I'm making myself do this.  Trust me if I could eat like a normal person I would.  Quite honestly I hate living like this.  I LOVED food and my body image is pretty good if you ask me.  I think I am drop dead gorgeous!  Sorry that's a little arrogant but seriously I'm not that girl and I would appreciate not being treated as such.  Another big issue of the day is the lack of communication.... maybe I should just start from the top.  On April 17th I went in for a normal GI (Gastroenterology for those who don't know the term) appointment, and like most appointments at the end...

I usually try to be pretty light hearted with my posts but now is not one of those times.  I have something pretty serious on my mind tonight and have been searching for the words to say.  To start, I guess I just want to say that though I may seem happy on the outside there is a lot that I deal with on a day to day basis that makes me anything but happy.  My therapist and I... yes, I have a therapist and frankly I don't know how I would function without her. But anyway, my therapist and I have been discussing emotions a lot lately and it has been brought to my attention just how much I shove mine aside.  I have trained myself not to talk or think about how I may be feeling.  I want to change that if even just for a moment... Every week when I walk into therapy, the session starts off with the question of how things are going both physically and emotionally. My answer? "Fine." Just about everything that my therapist asks is answered similarly and if ...

"Is not life more than food?" Matthew 6:25 This verse really struck a chord in me the other day and it made me wonder.... what is life? What is living? I'll be honest and tell you that I didn't really analyze things beyond that but I would like to now if only for the sake of something to do besides homework.  Yes, I'll admit that I decided to post right when I realized how much work I still need to do. Don't judge I'll get there.  ANYWAY... back to my question. What is life? (to whoever is reading this: it is probably best that you just stop now unless you don't mind senseless rambling... then by all means read on)  I have come to the conclusion that life can mean different things to different people.  As many of you know, I do not eat like a normal person... or when I do I throw it all up. (yummy) Hence why it was this verse that made me wonder and not another.  I'll explain.  So many people tell me that they would die without food... li...

Readers, I have a sort of test for you.  I'm going to write this post like I normally would but I want to ask that you give me some sort of feedback.  You can text me, call me, comment on my post, pm me on Facebook... whatever form of contact you choose to use I just want to see who my audience is and also get feedback from you if you have any to give.  So lets begin.  Most people come up with new years resolutions but I don't find them to be very useful so I've only thought up a list of things that I'd like to happen in the year of 2014.  If you know a way to help me with any of the following things that I'm going to write about go ahead and tell me what you have in mind.  Remember feedback is the backbone of this post.... plus I'm sitting in a hospital waiting to begin an MRE and have nothing better to do with my time.  So here it begins: 1. I am not usually into stuff like this but before I graduate I would like to be nominated for either home...

This makes no sense to me.  Correct me if I'm wrong but it seems, to me, quite absurd that my doctors and nurses, in seeing that I couldn't even get out of the bed on my own, would be okay with sending me home. Today was torture to put things shortly.  I had no clue how to unhook my own feeds until about 10 o'clock this morning.  Nobody told me.  I went home last night completely clueless and unprepared for what was ahead of me.  I am physically and emotionally exhausted.  Pain is at an all time high and I can't focus on anything for too long.  I've spent the majority of the past week asleep yet I still find myself tired.  Oh, and my hair is falling out again.  Sad day.. I am having a hard time not being angry... Angry at the world in general but mainly all of the people in charge of my care at Children's Mercy Hospital.  Oh wait, we don't know who that is!  Everyone and no one is in charge of my care all at once.  Wha...

Tomorrow morning at 8:30 I am scheduled to arrive at Children's Mercy North to prep for surgery.  I will be getting my new gj feeding tube placed.  This tube will go directly through the wall of my abdomen and, just like the one I have now, it will feed me.  I am excited mainly because it will no longer be on my face but at the same time I am very nervous.  My mom said the other day that she thinks this is it.  She thinks that all the problems that I have had leading up to this year was my body trying to tell us that it doesn't like food and we weren't catching on.  She doesn't think I will ever eat again.  As I think about the possibility of that being true I continuously become more afraid.  I didn't want this..  I didn't have a choice. I am trying my best to stay positive but as everything sinks in I can't help but get a little bit sad.  It is not easy being the only one around who can't eat.  None of my friends really...

Wow I never expected this experience with a feeding tube to escalate to where it is today.  In a few short days I will be meeting with a surgeon to schedule either a gj or j tube placement surgery.  Again... wow.  The doctors originally told me that I would be rid of this tube before school started. That didn't happen. Then I was told to give it a month. Nope. The dates kept extending until here we are four months later looking at permanent placements.  The thing is I wouldn't change it for anything.  Through every trial that my life has brought me I have learned something.  I have to believe that God will use my experiences one day to help someone else in the same situation as me. Life with a medical problem can feel very lonely sometimes.  You don't always have people readily available to talk to who know exactly what you are going through and you tend to get left behind when it comes to having a normal life.  I want to help show peopl...