today

New floor!!! look isn't it beautiful!?! thanks daddy!!!
Today i spent most of my day putting my room together. After a long weekend of being my brother's roomie. I'm finally in my own bed in my own room. New floor new closet. My room looks so pretty. Still no call from the doctor I'm hoping tomorrow. But if not maybe no news is good news. I'm more anxious then anything I'm not good at waiting. I would rather no now and get it done with. Today I'm thinking about a sweet girl named Megan...she is such an amazing role model for everyone out there please keep her in your prayers she needs some extra help. I'm thinking of her and checking her caringbridge almost hourly. please stop on over there and give her some encouraging words. My thoughts are on how strong people are and how they truly amaze others, seeing so many beautiful faces dealing with so much literally brings me to tears. How can this disease that is so ugly be in the faces of such beautiful children or in such wonderful and beautiful families. If you know the answer to that please enlighten me. Good night all sweet dreams

new

New room is almost done. Daddy and Aaron spent some hard labor putting in hard wood floors. Were hoping that taking the carpet out and giving everything will maybe help with my breathing issues. it's a beautiful room. Aaron is letting me sleep in his room. I'm hoping to have my room 100% back together tomorrow. I'll post some pics so you see how talented the Benson boys are. Tomorrow i hope to hear fro my doctor about our plans for the week...it is possible ill be admitted for up to 5 days. We are thinking maybe its time to try a new and super strong drug. So id like to just start feeling better. Also YAY for Megan who got her new lungs. I'm so happy for her and i know she is going to kick ass and take names with those new lungs. please keep all my CF family in your thoughts.

i lost

i lost a long time ago the ability to eat enough calories to keep my body healthy. I know its quite normal having cystic fibrosis but just saying that doesn't make it easier to live with. Knowing that a machine is doing such a simple job that i have lost the ability to do for myself is in some way demeaning. Knowing that with out that stupid machine clicking and clicking i probably wouldn't be where I'am at today. Losing that ability i also gained something; knowing when i need to put the pride and the anger for something i cant possibly change aside and do what's best for me. Thats all for tonight, i have to go hook up to the stupid machine and test my sugar, lets think low numbers. goodnight

Rainy Day Schedule

rainy day schedule makes me tired so i sleep a lot stay in my Pj's and that's what I'm doing lately. I had a doctor appointment on Monday but cancelled it because of the bad weather. driving from my house to Santa Clarita would have been a long drive so were putting it off until the weather gets better. Thursday is an appointment with my clinic and my doctor asked that Matthew take me, which is weird. i think he is in trouble. I have been monitoring my sugars and so far so good. I still cant get over stabbing myself with a needle i flinch every darn time. But what can you do? Im tired but not tired all at the same time. Its frustrating. life is frustrating at this moment. I guess ill just hang in there until the sun comes out and i can spend my days by the pool. good night all

Im thankful for

Friends. Friends who care enough about you to put you before them. Knowing that them having a cold could jeopardize my health. that's true friendship. I appreciate the people in my life that let me be "me" and not see the little things that i do that make me different. Being different isn't a bad thing. I enjoy being different. I enjoy the highlights of my week are Tuesday nights with the people i love the most and Thursday; volunteering helping 2nd graders do Math and English. Those are great days...not the normal days most 22 year old's are out drunk being stupid. Majority of girls my age don't want the same things I do. I want to have kids, own a house. Watch my brother get married and dance with him at his wedding. I want to be an Aunt. A Grandma too. I wanna live. And not the live like party like a rock star BS. I want real moments that mean something. I look forward to those moments. those are the things i dream of.

 good night all sweet dreams.

i owe you guys

I owe everyone some pictures, so here we go...

This is my Uncle Larry, bottom line, he is awesome.

Walking to the theater!
Look the phantom of the opera!
i hate doctor appointments!
I love him a lot.
My mom driving me home from another appointment, look at the bracelet!
long long day. rockin out on the way home from Doc appointment

Sugar Free in 09

have you ever known something was going to happen and when it did you still were in a state of shock? That's what I'm experiencing right at this moment. I have officially been diagnosed with CFRD. I saw it coming, i damn near looked straight at it a few times, but now the feeling is completely different. I'm angry! I'm angry at myself for drinking so much Cola and I'm angry cause testing your blood sugar 8-12x a day hurts and I'm angry that this is what I'm dealing with at 22. 

 end of pity party.

My Doctors goal is to have me on an insulin pump in 6 months and also a dexacom something or other. The appointment was not what i had expected so i didn't plan very well. I got some sweet diabetes testing stuff outta the whole deal though. Tomorrow I am going to have such a great day, im going to see Phantom of the Opera!! Just My mother Me and my Uncle. I'll try and get some pics for the bloggy.

here is a picture of Cookie, my moose. I know weird but this lil guy is the best he travels well and is compact...and he smells like vanilla. (cause of the tube feeding when they leak)

 

 p.s. anyone have any tips about this whole new chapter (CFRD) please let me know!

 

hellloooo

Hello everyone, I hope you all had a great weekend. I did it was quite, the parents went out of town so it was me and my Brother home alone. I think were odd children though because you would think when mom and dad are away the kids will come out and play; not us. We were bored outta our minds...it was very sad.

 Had a doctor appointment today it was the echo cardiogram. Unfortunately I do not know the results but was assured by the nurse it went well because the doctor didn't need to to be called in. So ill let you all know when i know

 good night