The Joys of having CF

The Joys of having CF

Tuesday, January 25, 2011

Update & The Countdown

Update: I finished my oral antibiotics last week. I go back on February 9th and redo PFT's. If my levels aren't any better then we'll discuss where to go from there. But, I feel GREAT!!!

Countdown: 45 days till my Make~A~Wish Trip. I am counting down the days till we leave and the warm weather, because frankly, I am done with having -24 in the morning grr...well I'll be out of town this Thursday till Monday going to Columbus, OH. Should be fun. Have a good weekend everybody :)

Monday, January 17, 2011

The Countdown Begins!

The countdown till Tahiti begins. in just 52 days, me, my parents, and my sister will be on our way to Minnesota Airport to catch a plain to Colorodo, fromt here to Los Angeles then Bora Bora!!!
We will be going March 11-20th. We will be on the island Bora Bora for 4 or 6 days, then going to the main island Tahiti for 2 days. Then on the way back we get to stay overnight in Los Angeles for a night and then we'll be home. I'm not going to share any major details, but all i can say is reality is FINALLY starting to set! the trip finally feels real! i just feel so blessed beyond belief. I can't wait to share pictures with everyone :)
Lastly i wanted to share a quote from the song Born Free by Kid Rock. The quote is, "you can knock me down and watch me bleed, but you can't keep no chains on me". I love that quote :)

Friday, January 14, 2011

the trip is finally starting to become real

Wow! the last 24 hours have been amazing!!! finding out dates of the trip, where we're staying, and choosing different activities to do, so they can book them ahead of time. Oh, my!! this is truely going to be a trip of a lifetime! i'm sooo excited! it it finally starting to be real now that the dates are set! i am speechless, i don't know what else to say. i'm just so darn excited!!! talk soon!

Thursday, January 13, 2011

And the dates of my trip are...

MARCH 11-19th or 20th!!!! I'm sooooo darn excited I can't even stand it!!! will post more later when i know more!!!

Wednesday, January 12, 2011

we WILL find a cure for CF!!! and one day CF WILL stand for Cure Found

WE WILL FIND A CURE FOR CF AND ONE DAY CF WILL STAND FOR CURE FOUND!!!!!! one day, not long from now, there will be a Cure for CF.
We will be able to show all those people that have told us there will never be a cure, or that we won't live long lives, we will be able to prove them wrong! I don't know about you, but proving people wrong about certain things makes me happy, and proving somebody wrong when they said there won't ever be a cure, or you won't live a long life, just makes me happy!!! I can't wait until the cure comes! I keep thinking of all the wonderful things the cure will provide to everybody who has CF. So, I want everybody to remember that one day-not long from now- THERE WILL BE A CURE!!! and we can proudly stand up and make CF stand for CURE FOUND!!!!

Tuesday, January 11, 2011

Thank You

I wanted to say a BIG thank you to all of my friends & family. I want to say Thank You for all the time's you've been there for me. Thank You for letting me vent on you. Thank You for listening. Thank You for not judging me. Thank You for the hugs when I've needed them. Thank You for your support. Thank You for all your kind words of encouragment. Thank You for letting me text you at wee hours in the morning if I needed to. Thank You for the wonderful phone calls, and text messages when i'm sick or in the hospital. Thank You for being able to look past my illness and see who I really am. Thank You for seeing me for who I really am. And mostly, Thank You for letting me just be me :)

I want all my friends & family to know, that I will ALWAYS be there for you. I will always be there if you ever need someone to vent to. I will always listen to you. I won't judge you. I will see you for who you really are. I will try to call you, or text you if I know you are in need of encouragement or just someone to talk to. I will be there if you need a hug, or a shoulder to cry on. I will try to be the best friend i can be to you. I will support you whenever possible. I will see you for who you really are.

So, again Thank You!!! and Thank You for reading my blog. Love you all very much!

Monday, January 10, 2011

I am the author of my own lifestory!

I've been thinking a lot about the quote, "you are the author of your own life story". I love that quote. It makes me think a lot on how I want to spend my life. I am the author of MY life! So here are a couple of things I plan on doing in my lifetime.
1) I plan on traveling. I want to see all 50 states. I want to go to different countries. I want to just explore and see the world.
2) I want to get married. I want to meet a guy who loves me for ME. Loves me for who I am. I want to marry a guy who makes me happy, and can learn to look past the fact that I have CF.
3) I want a family. I want to have children. I want to be a stay at home mom and raise my children with the values I want them to learn.
4) I want to move to a warm climate. I love where I live, absolutely love it, but the winter is just to cold for me, snow can come for a few weeks and leave-it can come for Christmas and for some snowmobiling and then it can leave again :)

I want to live my life to the fullest and have NO regrets! I don't ever want to look back and think; I wish i would have, I should have done that. I want to live my life to the fullest each and everyday. Mostly, I want to make a difference in people's lives. I want to help people. I want to go around and speak to groups of people and share my story, and hopefully help someone! I want to donate to different charity's, like CFF and Make~A~Wish.
I just want to live a normal, long and healthy life! and with the cure just 2-5 years away...isn't that amazing!!! I love listening to the song: Born Free by Kid Rock. That song is amazing! you should all listen to it sometime, I think you'll really enjoy it!!!

Sunday, January 9, 2011

What's been Keepin' Me Going

I just wanted to share 2 quotes that have literally been keeping me going the last week and a half. Things have been crazy, odd, sad, all ov the above. I was listening to my MP3 player a few weeks ago, and Bon Jovi came on, perticularly his song, "Livin on a Prayer". Great song!! I decided my motto for 2011 would be his quote in the song Livin on a Prayer. The quote is:
"you live for the fight when thats all that you've got"

Then I was on youtube and his song, "It's my Life" came on, and that is another song with powerful lyrics that I think of often-very often this last week and a half. The quote is:
"it's my life, it's now or never, i ain't gonna live forever, i just wanna live while i'm alive"

So maybe if you're having a bad day or need some cheering up, maybe these quotes will help. Bon Jovi and Rascal Flatts are #1 this month!

Saturday, January 8, 2011

I WILL prove you wrong!!!!!

Wow, so today was about the busiest, craziest days we've had in a long time. But it was also one of the saddest days I've ever had. A very good friend of the family's son died. He was in his early 20's. We went to his funeral, and oh my goodness it was so sad. I pray for their family ever night. He was so wonderful, and there need to be a lot more people like him on this earth.

So anyways, after the funeral mom and I were talking with my grandma, uncle and aunt, and my mom said, "i can't fathom what it would be like having to say goodbye to a child", and my grandma goes, "you probably will have to one day". My mom goes, "what do you mean? no i won't, my kids better go before me", so then grandma nods her head towards me. I love my grandma but my oh my.

So, this puts me to my post title, "I WILL prove you wrong!!! I love challenges, and this is one of those things that I can challenge myself to.
I WILL prove my grandma wrong, and I will live a VERY VERY long, happy and healthy life!!! and hey, i'm not done giving my parents gray hairs :) and I just have so much more living to do! I have a LIFE to live. I have only one life, and I'm going to make each day count! and not look back! I'm going to live

Friday, January 7, 2011

Pshh! I Got This!!!

I got this under control!! I am bound and determined I will NOT go into the hospital!!!! I have Great hopes that this year will be a hospital free year :)
I am feeling good. Chest tightness is less. I am currently taking Bactrum, and started Tobi up early. I have Cipro-but won't use it unless my culture grows staff, or psudemonus(spelling?). I still curently have stenotrophomonus(spelling?). I will be on Bactrum for 2 weeks. I started on Wednesday night, so I will be done on the 19th. I then go back to the dr. on February 9th, and we'll go from there. If PFT's are up that means antibiotics worked. If not--plan B. I'm praying they'll work.
Otherwise I am doing great!!! still feeling great! which is a plus when having an infection like pnemonia. It's easier to fight it off. I hung out with mom today, and got a haircut :) We talked to Make~A~Wish people, and the travel agent is in the process of planning my trip. WooHoo!! So since we know it will be forsure in March, I scheduled a hair appt. for March 2nd :)
So this is a recent update. Have a great weekend. Not much planned for us. Going to a funeral/memorial for a family friend who died way to young. He was only in his early 20's. We know this family VERY well! So, please keep them in your prayers.
Have a good weekend and I will keep you all posted :)

Thursday, January 6, 2011


Okay, so I didn't have a great appointment at all like I thought! I woke up this morning, and was feeling great, got some vest done, got my cup of coffee and away we went to University of Fairview Medical Center in Minnesota. So, at around 9:00 a.m. it was PFT(pulminary function test--measures my lung function) time. Now I normally Love doing PFT's it makes my lungs feel so wonderful after I do them. I feel like a new girl after them. So anyways, last time in October my lung function was 97%, which is AMAZING!!! I was the healthiest I've ever been in my whole entire life. Now, in my previous post(s) I had talked about my resolutions for 2011, and one of them was, staying healthier, and no hospital stays. Well anyways it's PFT time. I blow my first one...88% yuck! so then I blow again...90% bad. So then I think, oh I left my stupid retainer in, maybe if I take it out that will help :) nope!!! I blew two more 90%'s, and two more 92%'s. That makes a total of 6 tests(normally we do 3-4). Oh, and now my chest feels VERY tight(not good). So, mom and I looked at each other, and we both new--X-ray time! So off we go to our normal appointment, and they take my blood pressure 141/58 or something like that. That's really high! They did it again, then it was 130/52 or something like that. Still high, but better. **Before we left it eventually was down to 110/? :) all I know is it was better. So then it's time to see the dr. First the fellow comes in, and takes notes etc...then my regular dr. Dr. Lagoona. She's awesome! I think I have pnemonia again, just by the way I felt after PFT's, they had a suspicion that's what it was to. So down to X-ray we go. Now by having so many X-rays in my life, I have become pretty good at reading my X-rays, and let me tell you-this X-ray was anything but good. It was bad! I could see shading everywhere. Right upper and lower lobe, and left upper and lower lobe. GREAT!!! So they call in an antibiotic, Cypro, well then we get home after 2 hours in the Pharmacy and they call saying that Cypro doesn't work with one of the things I cultured last time..Stenotrophomonoss, basically Psudemonus's cousin.(spelling isn't right). So then back to the pharmacy we go to get Bactrum. 2 pills every 12 hours for 2 weeks! Follow up appt scheduled for Feb. 9th. Now talk about a long day. But on a plus side...I GAINED WEIGHT!! YAY!! I finally gained the weight back that I lost when I was sick in September.
Sooooo if i'm not feeling better by Friday or Saturday, i'm going to have mom call and see if they can put me in. My theory is, "none of these pill expierements, just put me in, hook me up for 1-2 weeks with the good stuff and send me home all better :)". Soo let's see if my resolution can stay true :) But all I can say is, ever since PFT's, i'm not myself. Somethings wrong. I can just feel it, and i'm so weird that nobody can hear crackles or pnemonia when they listen to me. So, here's the update and will post later. Bye!

Tuesday, January 4, 2011

In 10 hours...

In just 10 hours I will be at my dr. appt in Minnesota for a check up. I go every 3 months as a routine(because of having CF). As you may or may not have read from my last post, one of my new years resolutions is to have awesome lung function, and make 2011 a no-hospital stay year! and so far, I am having a VERY great feeling that tomorrow's going to be a great appt. I am almost positive my lung function will be 97% or higher. I'm shooting for 98 or 100%. fingers crossed :)
*I am also going to try to remember to ask my awesome doctor, if there is any research study's/opportunities for me to get involved in. It's been a while since i've done any research study's, but I was one of the children who was involved in the study that children I believe under the age of 5 could take Tobi or Pulmozime. I was the one who did the study and determined that! I feel so proud to this day that I was the one who was partly responsible for kids around the U.S. to be able to take Tobi or Pulmozime under the age of 5.
So everyone have a good day and i'll keep you posted :)

It's 2011

Wow, it's 2011. This year is going to be the best year by far. More memories are going to made this year than any other year. 2011 is going to be a year to remember! In probably 2-2 1/2 months we will be going to Bora Bora, Tahiti(still waiting to hear exact dates, just know sometime in March). This year I have made some resolutions for myself. I always say I'm going to do something and it never fails, I never follow through with them. BUT this year I WILL follow through with my resolution.

This year my resolutions are:
1) No more "food" from McDonalds, Hardees, or Burger King!!!!
2) No Hospital! Stay healthy(i am currently the healthiest i've been in my Whole. Entire. Life. I want to keep it that way. My lung function is currently 97% which is awesome, but when I go to the doctor Wednesday the 6th, my goal is to have my lung function at 98 or 100%)
3)Become Fit(now i'm not over weight by any means, I love my appearance and everything, I just want to take better fit of myself, do more excercising, and start back up with my 1/2 mile run everyday-starting in Spring).

So I just wanted to welcome everyone to 2011, and do a little update :) I will post more after my dr. appt on Wednesday :)