The Joys of having CF

The Joys of having CF

Thursday, February 23, 2012

PICC Movie-CF awarness

So as some of you probably remember from previous posts from when I was in the hospital, when I got my PICC line put in I was going to be the PICC line model, for teaching purposes to help other kids when they get one to teach them about it. It was through Child Family Life. They had a photographer, Jim, come in and he was great. He took TONS of photos, and he was nice enough to make me my own copy with some of the pictures. Well, I decided to raise awarness for Cystic Fibrosis, to make a video of the pictures. I promise there is only 2 pictures with blood. Nothing to bad. So here is the link to watch it: I hope you enjoy it. Feel free to share it with anybody to help create awarness for Cystic Fibrosis, and since the Cystic Fibrosis walk is coming up, you can also feel free to visit my CF walk a thon page: Any donations are appreciated to help raise money to cure Cystic Fibrosis. CFers have an unusual bond together, CF makes us stronger, and no matter what obstacles we are faced with, in the end we just learn to....STAND! ~God Bless

Monday, February 20, 2012

Picture Post

Okay so I haven't posted many pictures in a while, so I wanted to catch you up to speed with some pictures from the last few weeks & from when I was in the hospital. Enjoy :)

This was the view from my hospital room.

IV #1(gotten on a Tuesday)

IV #2(gotten on a Wednesday)

PICC line(gotten on a Friday)--see previous posts for PICC story.

My lovely bruise from my PICC line--it doesn't hurt :)

My friend "pole" which keeps me very non-mobile. It's the first time ever that i've actually had to have an iv pole for home iv meds.

I got my hair done on Friday. It's hard to tell in the above picture, but it's a brown/mocha color in the front and the back is copper :) I call it "serious in the front, party in the back"

Here you can sort-of tell the difference.

this is a HORRIBLE picture, but you can actually tell what the different colors are :)

**Have a great day, talk soon. ~God Bless

Friday, February 17, 2012

It's not being brave...It's part of having CF

So i wanted to do a small post about bravery. When i got my PICC line last Friday, i have to admitt it was an expierence i've never had before. I will admitt i was a little scared at first when they had to go to my other arm to do the PICC because of to much scar tissue. I knew that that arm had to much scar tissue, but i had faith. I had faith that it would work...even though i knew it probably wouldnt and was i shocked, mad, dissapointed? Of course!! But i didnt show it. I think thats where the bravery part comes in. When you have an illness or medical illness, in my case CF, you tend to not show your emotions right away. You tend to put on your "brave" face and "go with the flow" as some call it. Some people say i had patience that day, and that i was so brave, and went with the flow. But truth is i was scared. Reality started to hit while i was lying on the table with both my arms out while they had to call the Dr in, reality was/is that CF does really affect you. Why that hit me then i will NEVER know. BUT, all i kept thinking was, this is part of CF, this is MY life, MY reality. Is it hard? ABSOLUTELY. What part of CF isnt? Is it scary? SOMETIMES. And do you have to be brave sometimes even when you dont want to? ALWAYS. BUT, will i ever regret God blessing me with CF? NEVER!!!! I am choosing to live my life, smile when sometimes id like to cry, and be BRAVE even if i dont feel like it because its not about being brave, its just part of having CF

Monday, February 13, 2012

Day 28-30 & Health Update

Well first i'll do a health update. On Friday I got my PICC line as planned---but it didn't go as planned. I was the "PICC" model. But let me tell the story of how a PICC placements that supposed to only last 30-60 minutes TOPS ended up taking 2 1/2 hours. Lets just say this chica wasn't to happy. First they wanted to try my right arm since they couldn't find a vein in my left, but it didn't work. To much scar tissue. They even had to call the dr. in and he said he could probably get it in in my right arm but i would have a huge risk for blood clots, and he wanted to try my left arm but it was my choice. Of course i don't want blood clots so I chose my left arm. He was able to find a deep vein and it worked. He had to put in a smaller sized PICC line. but basically he said my veins are tired. They've worked very hard. So he said next time I need a PICC line I could but it'd be best to do it under sedation, but in the future to start thinking about a Port. Anyway's that's how the whole thing took 2 1/2 hours. So now i'm home on Levaquin & Doxicyclin IV meds, 2 added inhaled meds, upped my one med to 40mg instead of 20, and added Bactrum for another 10 days. So my days as you could say is pretty busy. And doing VEST 3x a day. they said 4 but I can fit 3x forsure.

Next the end of my 30 day challenge. Day 28 is-in the past month what you learned? Well what I learned was that your health is never promised. You can go from being healthy one day and sick the next and a week later in the hospital. Of course i knew that but it was just a refresher :)
Day 29 is-Something you could never get tired of doing? Something I could never get tired of doing is TRAVELING. I absolutely LOVE traveling. Ive been to many places and can't wait to go to many many more--with my baby :)
and Day 30 is-A photo of myself plus 3 good things that have happened within the last 30 days. 3 good things that have happened in the last 30 days are 1) Got to see my friends from out of town :) 2) was asked to be a PICC "model" i know it's weird, but i thought it was cool 3) met some awesome people in the hospital.

Well i just finished my 2 nightly IV's and it's time for me to take a shower, do my VEST, and hit the hay. Love you all thanks for all the thoughts and prayers. ~God Bless

Thursday, February 9, 2012

Hospital update & Day 27

Day 27 is what kind of person attracts you? Well the type of person that attracts me is someone who is of course; nice, and loves to help people, and likes to make a difference, someones whos confindent, and knows "why they believe what they believe". That is what kind of person attracts me.
Hospital Update: Well today made day 2 1/2 today. I came in Tuesday night, got my IV and started 2 very hard-core meds. Doxicyclin & Levaquin. Well because they are so strong, it was messing with my iv, so i had to get another one last night. So tomorrow (Friday) I am getting a PICC line, and then I should be able to come home Saturday on home IV's for 2 weeks-give or take. So that is the game plan :) Yesterday i had what they call an arisol x-ray scan which is where i breathe in and out something that has oxygen and some kind of radiation type thing(the whole scan supposidly had less radiation than an x-ray), anyways the scan as I breathed in and out showed where all the air went in my lungs, and the purpose of that scan is to see if i have any blockages in my lungs. I keep saying I have pain in my right lower lobe, and my upper left lobe and its not that they don't believe me, but they have a hard time treating it because they can't see if on an x-ray and they can't hear it when they listen to me, so this scan was supposed to see if there was any blockages. Well there were two little blockages-guess where? yup a small spot on my LOWER right lobe, and a little bigger one on my UPPER left lobe. So now they know the correct way to treat me :) So that's whats new and the game plan, after 2 weeks they want to redo the scan to see if the blockages are gone, and if not then we'll go from there.
OH, also, when i get my PICC line i'm going to be a model. During my PICC line placement they are going to take pictures of the whole process start to finish, and then when they have to explain the procedure to people/kids they will use my pictures to explain the procedure. A photographer comes in and everything. I'm kinda excited about it. Well i better go, I have a VEST at 5:00, IV meds at 6 or 7 or 8. Have a good night. Love you all. thanks so much for all the thoughts and prayers. ~God Bless

Day 25 & 26--Hospital Update later

So yesterday was day 25 and today is day 26. I will do a hospital update later. Anyways, day 25 was your top 5 favorite books/movies. My top favorite movies are:
1) Ladder 49
2) Hairspray
3) A Walk to Remember
4) Sweet Home Alabama
5) Miracle
and for the record i love ANY John Travolta movie :-) Next is my top favorite books are:
1) Hope was Here
2) Do You Think I'm Beautiful
3) Grown up Girlfriends
4) 7 Habbits of Highly Effective People
5) To Kill A Mockingbird
Day 26 is a photo of a place you want to go. I don't have a picture on my phone but i've been to Bora Bora and definetly want to go back soon but I do want to go to the BVI (British Virgin Islands).
Well i will do a health update later. Love you all. ~God Bless

Tuesday, February 7, 2012

Day 24 & Hospital

Day 24 is something that means a lot to me and o course that would of course be my baby Bo :) I dont have a picture because im posting this from phone so you'll have to look back at Day 21 or i'll try to post a picture of him. Also i want to give a health update. I am currently in the hospital. Ive gone 8 months without being admitted so im not to dissapointed. I was expecting it. Theg are talking no PICC line so it should be a short stay. I always say i have expensive taste and like nice things and i love going on vacations, why not go somewhere expensive that has room service ;) haha. Well i shoild get to bed i will keep you all posted. Thanks for all the prayers and get well messages. It truely means a lot. Love you all. ~God Bless

Monday, February 6, 2012

Day 23

Day 23 is 15 facts about me:

1) I am a Christian
2) I am 17
3) I have Cystic Fibrosis (of course)
4) I have a mini Yorkie named Beauregard(Bo) and he is my Baby.
5) I have been to Bora Bora
6) I love to travel
7) I have a big love for food
8) I am homeschooled
9) I have 2 older sisters
10) I love the Cosby Show (even though we don't have T.V.)
11) I just got an iphone and L.O.V.E. it
12) I am naturally a brunette-but color my hair
13) I love shopping
14) I believe God put me on this earth for the reason of helping people and making a difference in the world and i'm not going to let him down. I believe he has big plans for me.
15) I live life by the motto, "life's not the breaths we take, but the moments that take our breath away"

~God Bless

Sunday, February 5, 2012

Day 22 & Health Update

Day 22-I didn't like the topic of day 22 so I'm going to skip it, but instead give an update on things in my world and my health. First, I want to say that on Friday(Feb 3) I FINALLY got my iphone 4s after waiting since May. I got the White Iphone 4s---and let's just say it's the most amazing phone ever! On Saturday(Feb 4) i spent the day with my mom and two sisters, we haven't done that in a while and it was one of the best days ever. I miss that we must do it again Soon!! Now onto my health. Well remember how a couple of weeks ago I had a great doctors appointment and my FEV1(breathing test) i blew a 97%, well as I write this, i'm writing it on vest with very tight, hurting lungs, taking 3 antibiotics, and planning my "future" hospital stay-Let me explain. I haven't been feeling good for a while(lungs) and have been putting it off because we've had plans that i didn't want to miss so i haven't told anybody-not smart i know. So I do tobi every other 28 days. I am currently on it. I take Azythromicin 3 days a week.
Well I started not feeling good at all. Wore out, tired, & yes the cough. I haven't been sleeping-laying awake till 5 a.m. is no fun at.all. So mom called the dr. and they sent in for perscription Bactrum. I've been on it now 4 days and still no difference at.all. So mom's going to call tomorrow and see what plan B is. I don't want to expierment with anymore meds. I am anticipating a hospital stay this week. I know sad right? But it's okay because I know that it's the easiest way for me to get better, and IV meds work amazing. So that's what is going on in my world of health updates. I will keep you all posted on what is decided, but don't be surprised if one of my next posts is from Hotel U of M Amplatz Childrens Hospital :) I mean hey i like nice "expensive" vacations, why not just make it to a hospital--hey they have room service :) haha. Have a good day! ~God Bless

Saturday, February 4, 2012

Day 21

Day 21-A photo of something that makes me happy. Well lots of things make me happy-but one thing that never fails to "not" make me happy is my baby-Bo. My dog :) He cam make me happy even if i'm upset at him for not listening, or if i'm in a bad mood, or having a crummy baby's with me all.the.time. I love him SO much :)

Friday, February 3, 2012

Day 20

Day 20 is the meaning behind my blog name. The meaning behind my blog name "The Joys of having CF" is a very simple meaning. I believe that God gave me this illness for a reason because he new I could handle it and he new i was strong enough, and I consider it an honor, and the people i've got to meet from having CF, the things i've gotten to do, the stories i've read about people with CF, I condier it a "Joy" of having CF. Hence the name "The Joys of having CF".

~God Bless

Thursday, February 2, 2012

Day 19

Day 19 is your reflection in the mirror.

this picture is from last year at my Make-A-Wish going away party. :) Have a super day. ~God Bless

Wednesday, February 1, 2012

Day 18

Day 18 is 5 things that irritate me. Well not to much irritates me, but here's my list:
1) People acting like they are "big shots"
2) Clinking forks on plates(it sends the chills through me)
3) People who make a big deal out of something so small or nothing
4) Interupting
5) When doctors "expierment" with different meds when your sick :)

Those are 5 things that irritate me. Nothing major. Have a super day :) ~God bless

Day 17

Day 17 is how I hope my future will turn out. This is a topic I think about all.the.time. I dream of my future so much. I have such big dreams.
I hope my future is a great one. I hope I can love, respect, serve & honor my God with all my heart and make him proud of me I play on getting married one day to a loving man that loves me for who I am and accepts my illness. I hope to have 1-2 kids. Live in a nice house, have a nice car, and have Freedom. No money issues, and be a stay at home mom. Live a very very long happy "healthy" life, and do all i can to try to help find a cure for CF. I hope to help as many people as I can and live a life of excellence.
That is how I KNOW my future will be.
Have a great day. Love you all. ~God Bless