That One Sick Girl

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...

Wow it's hard to believe it's been a whole two weeks since I finally got out of the hospital... Here is a little bit of an update.  During my last stay in Children's Mercy I was diagnosed with amplified pain syndrome which in general terms means that my nerves are overactive and misfire when my body is injured.  For example where a normal person would stub their toe and hurt for about 30 seconds then move on someone with amplified pain might get much worse pain that lasts longer.  It is believed that my gastroparesis and eosinophilic gastroenteritis are causing much more pain than they should due to the amplified pain.  For those of you who know what POTS or dysotonomia are this disease encompasses those and has the same characteristics but is a broader term.   Because of the new diagnosis I am now involved in an intense physical therapy and desensitization program to try and retrain my nerves to act normally.  So far there is no change in my abil...

There comes a point when everything that a kid like me goes through becomes too much.  Today I have finally reached that point.  I'm so tired of hospitals and things are really beginning to get to me.  I want nothing more than to go home.  Take it from me the hospital is not a place of healing.  It's a place where kids rot.  It's impossible to get better because of the stress that being away from friends and family causes.  Mentally, it is a dungeon.  It causes a deep depression and more stress than is necessary.  Nobody deserves to feel like they are imprisoned within walls that are thicker than molasses... to be cliche.  And really, no one should have to.  I don't understand why anyone gets sick.  It's really not ideal for your social life and it honestly sucks... a lot.  Not knowing what is happening to your body can really bring a person to their breaking point.  I know that's where I'm at.  Last night w...

The most frustrating thing to hear are the words "I don't know" and unfortunately that's all I've ever heard.  All my life I've dealt with pain.  I have seen countless doctors who have given countless answers when in reality they have no clue why my body attacks itself.  I am at the hands of their mercy and have little to no control over my own life.  If you know me then you know how much I hate this.  I am the type of person who needs some sort of control over everything that I do.  When all I hear is that I'm a mystery it takes everything in me not to break into tears.  I still fail sometimes though.  I go through stages where I can do nothing but cry because I don't understand why this is happening to my body.  I put on a brave front at school or when out in public view but the truth is I struggle a lot.  My emotions are all over the place and I feel almost completely alone in what I a...

I am becoming more and more frustrated as time goes on.  You would think that being in a hospital would make your pain better but it doesn't really work out that way.  After starting my feeds back up last night I woke up extremely ill.  As if the pain weren't bad enough my doctors had a "schedule" made up for me.  I am no longer allowed to nap nor am I allowed to lay in my bed during the day.  Also, I am required to take a walk at least five times a day and meet with a physical therapist.  This is by far the most aggravating stay yet.  I mean no NO NAPS are you serious?!  I can't even make it through a full day of school without napping how is the hospital any different?  It's not!  I am really starting to doubt the intelligence of these people.  On the bright side I do get to meet several other kids who are dealing with the same types of things that I am.  I am learning so much and am discovering...

Here's the thing, I've been sick my entire life but up until now I hid behind the small amount of normalcy I had. When I started out this year I couldn't do that anymore and I'm gonna be honest walking into school on the first few days was hell. All of a sudden everyone was asking what's wrong with Tristan. Problem is nobody was asking me. I was a specimen to be looked at under a giant microscope and I could see EVERYONE looking. I felt angry and alone and also very frustrated. I understand that the tube is a scary sight but I don't really enjoy being treated like the lonely betta fish in its own bowl while all the other fishys get to swim in the crowd. And really, two simple words would have made it all better. TWO WORDS. "What happend?" That's all I needed to hear but practically noone would ask me. Trust me, staring out of the corner of your eye is not the answer. I may be a little weaker and I may eat from a tube now but I don't bite... wel...