That One Sick Girl

I'll be the first to admit that this year has been a rough one. Between receiving an Autism diagnosis at the age of 21 [yes, you read that correctly. I went 21 years feeling like something was wrong with me before receiving my diagnosis], dealing with a huge transition period in which my boyfriend will be moving too far away for me to even comprehend, and having to leave the fall semester before finals due to malnutrition, things haven't been easy. I feel like I push myself beyond my limits just to keep my eyes above the water while other kids my age are soaring high above water with their heads held high. I feel cheated a lot of the time, and I try to remember that it could be worse and that God will never leave me to fight this alone, but some days are just harder than the rest I suppose. Today was one of those days. I have been missing a lot of class for the last two weeks due to being in unforgivable amounts of pain, and yesterday I found out for sure that I need to have ...

Wow... I am almost lost for words when I think about all of the love and support being shown to me by complete strangers. Let me just say, I can definitely feel your prayers being lifted up to our Lord in Heaven, and, little by little, He is taking away my fears. As far as my health goes, I'm still in pretty bad shape. I drove back to college last night, and the pain in my hips and lower back is definitely worsened today. I'm hoping that will get better with time and rest.. We have yet to hear about my biopsy results, so I have no new news as far as treatment options and the official diagnosis of Behcet's Disease, but I'm hoping those results will come sooner rather than later. When they do come, the plan is to start a drug known as Remicade. This drug has to be infused, so I will most likely need a new central line put in, but, frankly, I'm okay with that because my veins are so tired. The simple act of drawing blood often takes 13+ sticks with no success. I am r...

Admitting to fear has been difficult, but healing, in many, many ways.  It's come to a point in this crazy life of mine, where I have to completely rely on my faith in God. I just can't do it on my own anymore, and that is okay. I have been flaring for several months, and it's finally come to a point where I feel as if all I want to do is cry. I'm afraid for myself. I'm afraid for my life My pain is at an all time high, and I continue to gain new symptoms pretty regularly.  It's exhausting. In May I started getting vasculitis in all of my IV sites which caused blood clots.  I then needed to wear compression garments for several months. In addition, the new symptoms have brought forth a very frightening new diagnosis.  I must admit, though the diagnosis isn't yet official, I was almost brought to my knees in terror when I realized the seriousness with which things are headed.  We are 98% sure that my biopsy results will come back saying exactl...

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...

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 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...

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...