Fighting Poem

Fighting

I want to give up

I’m sick of fighting

I’m going to break

I’m silently hiding

Under the smile

I’m not as strong as you think

I’m falling apart

My life is crumbling

It feels like my fault

The guilt haunts me

I wish this wasn’t me

I’m trapped in the walls

The walls of my disease

I’m silently waiting

For some hope to shine through

I feel like I’m suffocating

I will push through

If that’s what I have to do

I hide my emotions

I’m falling apart

I don’t want to fight

But there is no choice

I made it this far…

Yesterday, Today, Tomorrow

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Yesterday I was happy. A little girl that was innocent, with the whole world on her shoulders. A ray of sunshine. Not a care in the world. Full of energy and joy. She loved to play. Letting her imagination run free. Playing with friends and climbing on monkey bars and trees, doing cartwheels all over. Going to school and loving life. Jumping in chalked squares and jump ropes. Riding her bike and feeling free. Feeling the wind in her hair and the adrenaline in her veins. Not caring what others think or others opinions.

Today I am struggling. Not innocent anymore. Having my whole life stresses on my shoulders. No energy and not normal. Definitely not normal. The hospital is my second home. Depression, Anxiety, Stress. Panic attacks weekly. Reality slowly replacing the happy girl I once was. Seeping into all the cracks. Today I experience the reality of my disease. Creeping up to me when I least accept it. Having bad days more than good. Instead of loving being around people I like being alone. Finding comfort at night. The stars shinning just like I once was. Letting my thoughts run free, even though I feel trapped in them. Loneliness and guilt comes and goes. Writing my feeling out. Painting them away. Blocking them out in music. Feeling as though the only ones who truly understand are online.

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Tomorrow I accomplish my dreams. Travel around the world. Sell my art. Spread awareness. Pursuing my dream job and loving life. Although I still have bad days I am more positive. Although I still struggle I have lots of support. I do crazy stuff. Go cliff diving, maybe skydiving or get a tattoo. Living my life to the fullest. Falling in love or filling my house with pets and art. Going to London, Italy, New Zealand, France. Learning about different cultures and art.

The A&R Journals: Hospital Diary’s #11-12

Day #11

Today I got pfts and a cat scan done of my lungs. My pfts were down and I haven’t heard about the ct scan yet. I got a ct scan of my lungs since my doctor wants to try and find what’s causing me to be sick so often. I already got a bronch done and all they saw was inflammation. In pt I went on the treadmill for 10 minutes as a warm up. Then we did a bunch of things like jumping jacks and mountain climbers. Then we skipped back to the room as a little race. Annabelle got some fabric to make a tie blanket like I have. She got a really soft fabric for the first layer and then a fabric that wasn’t so soft and has a pattern on it. Mine are taco dogs, Annabelles is flowers. We went on a walk and got some food. We got breadsticks from the cafe on the 2nd floor that’s close to the elevators. Then we went to the vending machines and got pirates booty and a rice crispy treat. We ate it in the courtyard that’s right there.

I painted more on these wood block things I got the other day and I actually used them all. I’ll post some of them soon. When I was painting we watched read player one again because we only rented it. Me and my sister started watching a show called arrested development and it’s funny, but not as funny as the office. My dad recommended it to us because we’ve probably watched the office over again 5 times and we wanted to watch scrubs but it’s not on Netflix anymore.

Day #12

I woke up at 6:30 because a neurologist was going to come in and do a evaluation type of thing since I have hyperventilation when I sleep which is basically where I don’t breathe out all the way so I have to much CO in my body so I have to get a bipap machine to wear at night. Anyways the reason that doctor came was to see if there was a reason why but she didn’t find anything abnormal. Ell’s gtube and bronch is today. I went down with her which was around 6:40. Is was for 7:30 which is around where she actually went into the operating room but they said it moved to 9 but it wasn’t. She back there right now and I’m doing therapy for the first time today. I’m really tired because surprise surprise I got crap sleep but we’re getting discharged tomorrow! I’m happy and I’m probably going to start packing up. I’ll update when the doctors come around for rounds and later after I do pt.

Rounds came in and nothings new. Annabelles out and I got meds. I’ll probably go on a walk later and bring Annabelle with me since when I got my gtube I walked around but not to much. I had to have stuff on my legs since I wasn’t walking around since I was in pain. She’ll need to be hooked up to feed sthe rest of the day so she can do it tonight. She goes up every 10ml every hour for the rate to make sure she can tolerate the feeds.

Anyways that’s all for now, bye!