The Joys of having CF

The Joys of having CF

Friday, December 23, 2011

Happy Holidays

Hello! I apologize for not udpdating more, my goal for 2012 is to try to update way more than I currently do, I will post pictures of our trip to Florida, but for now I just wanted to wish everyone a very Happy Holiday season! I hope you all enjoy it, and cherish it with your families. I hope we all remember what we are thankful for this holiday season. For me, I am simply thankful for my health. My heart breaks for those who recently lost a family member and loved one, for those who's family members aren't around for the holidays anymore, and for those who are ill this holiday season and spending it in the hospital. I pray for all of you. I wish everyone a very very Happy Holidays, from my family to yours!!!

Love and God Bless.

Friday, December 9, 2011

I'm back!

Well I am back from our wonderful trip. I am working on a post of our trip and will post it soon. I will say though we had a blast, and can't wait to be snowbirds in the next year or so :) Have a great day, and will post soon. Love you all, God Bless!

Sunday, November 27, 2011

I didn't forget

So here is a picture of my new car that I promised from my last post. It needa a little work, nothing major but I LOVE it!

I forgot to take a picture of my coach purse, but i'll try to remember. I love that to. It's just a simple brown purse with purple inside :) It's a little older but I don't mind.

Also, last Wednesday my oldest sister got engaged. I'm so happy for her and her fiancee.

Anyways, i'm getting ready to leave Wednesday night for Florida. My parents qualified for a promotion with their business so we're going to Florida by our friends house, and going shark fishing on their yacht(possibly) and visiting, and then going to visit with my grandma and grandpa who live down their.

So, I will try post either before I leave or when I get back and share some pictures. Hope everyone's well. Love and ~God Bless

Friday, November 18, 2011

6 days ago.

6 days ago I turned 17. Now before I tell you all about that, I want to say how truely thankful and honored and blessed to be able to have celebrated 17 years. When you have CF each and every birthday is something special, and should never be taken for granted. I am so thankful God has allowed, and blessed me with being so healthy. I will have MANY many more birthdays to come :)
Now for details. On my birthday I had to get up early(can you believe it) and we had to get on the road. I opened some of my presents from family, I got some money, and my very first Coach purse :) I was so excited. It's pretty awesome if I do say so myself. It's brown, with a buckle, and the inside is purple.
Then we get on the road, I had no idea why until we went up the ramp on the exit my dad took.(it was the exit where my new car was). Sure enough, my dad surprised me by getting me my new car on my birthday. So then we drove it home, went to my grandparents, dropped my car off at home and back to town we went.
Then we did some shopping(clothes of course) but not without going to Starbucks first, (My dad loved being the chofer vs having to actually go into every store(I only went to 2 stores). Since it was my birthday I got a Venti Iced Salted Caramel Mocha :) yum-o.
Then it was time for my birthday supper. We went to Olive Garden, an Italian restaurant and ate till we almost tipped over haha. I had a great birthday. Truely awesome, and now i've learned that my dad loves pulling off surprises. It was the first time there was nothing scheduled on my birthday.
So I will post pictures of my new car soon, and of my new coach. I hope you all have a wonderful day. ~God Bless

Monday, November 7, 2011

My "Little Man"

Who has the cutest little man? Me :)

I want to do a little post about my baby. My Little Man. My Mini Yorkie named Beauregard. We all call him Bo. He is 2 years old, and we've had him for 2 years as of last month(October). He is the I love him so much. As I type this he's taking his afternoon nap :) He LOVES taking walks. He loves playing with his numerous amount of toys, and he loves cuddling. He sleeps with me every single night. He's awesome.

For Christmas i'm hoping to get him a new carseat. Yes, my dog has a carseat, he goes in it in the car, it keeps him safe. I want to get him a black one, and personalize it in red letters to say "Little Man". That is his nickname that has stuck since we've gotten him. So, I want to share a few pictures of my "Little Man". Hope you enjoy! ~God Bless

Sunday, October 30, 2011

It's been a while

So, I want to apologize again for not doing a blog post since October 1st. So for 29 days. Well I'm just going to give a quick little update on what I've been up to in the past 29 days, and I WILL try to become better at blogging more often. So In the last 29 days I've:
*Got the Flu Shot :)
*Started my 28 days of Tobi
*Went to Ohio
*Spent time with family in Illinois
*Took my baby to get a haircut(my Yorkie, Bo)
*Been enjoying life
*Enjoyed the last few days of nice weather
*Put money down on a new vehicle :)
& most importantly...
If anyone knows me, normally in October I get sick and sometimes go into the hospital. Well i'm still really healthy, and I'm going to try to shoot for a hospital free year!! If I can make it 7 more months, it will make 1 year since i've been in the hospital...fingers crossed.
I can't get sick this winter, there's to much exciting things going on. In December Me, My mom, My dad, and my baby are packing up the vehicle and heading to Florida for about a week or so. We're going to see our friends there, and possibly go on their yacht, and visit my grandma and grandpa down their also.
Also, in February sometime, we're going to Arizona for a couple days. I can't afford to get sick, and in 13 days it's my birthday. WOOHOO!! I'm so excited, but I'm most excited that I'm so healthy for being almost 17. Some people aren't as lucky. I'm so thankful for how healthy I am, and I thank God everyday for everything he's blessed me with.
Lastly, if you guys could, could you keep my friend Jordan in your prayers, she's 17 and has CF, we've become very good friends, she's in the hospital right now, you can visit her at her website:
Love you all...will write soon. ~God Bless

Sunday, October 2, 2011

Awaiting Winter

I know, I can't believe I said that either. But, the reason I said that is because this winter is going to be awesome!!! In December we get to go visit our our great friends George & Jill in Arizona, and sometime over the winter we also get to go to Florida. See my parents just hit some goals, and new levels in their business and that qualifies them/us to get to go to Arizona and Florida. The Arizona trip is for all 3 of us, and the Florida trip is mostly for them, BUT since my grandma and grandpa(my mom's parents) live their, I get to go with, and while my mom and dad are by our other friends(probably shark fishing--lucky ducks) I get to hang out with my grandma and grandpa. I'm excited. I don't see them much, so this will be awesome!!! I'm so excited for 2012. It's going to be the BEST year our family's ever had!!!! And, i'm hoping to make it my healthiest year yet! Have a good day!!!

~God Bless

Saturday, October 1, 2011

Cost of a Lung Transplant

Have you every really thought of how much a double lung transplant had? One of my facebook friends had that as a post a few days ago, and the average is around $5-600,000. Give or take. It could be off a little. She said in 2007 a single lung transplant costed around $400,000. The average cost of a double lung transplant was $550,000. If you had a heart-lung transplant(getting a new heart and one lung) was around $875,000.
The total cost of a lung transplant includes several types of expenses, such as diagnostic tests, the costs of procuring and transporting donor organs, fees for the surgeon and the anesthesiologist, pre- and post-operative hospital care (including time spent in the intensive care unit, or ICU), and fees for prescription drugs. For example, the total cost of a single-lung transplant includes about $20,000 in evaluation fees, $41,000 to obtain and prepare a donor lung, $33,000 in physician's fees and $210,000 for the cost of the hospital stay. It also includes about $65,000 for follow-up care and $30,000 for immunosuppressive medications. All of these expenses may vary according to the particular medical provider, and the length of the hospital stay.
Resource:: online resource Transplant Living.

Just think about those numbers. It's INCREDIBLE!!! That is why we have fundraisers to raise money. The Cystic Fibrosis Foundation is not government funded, so it's up to us to raise money to find a cure! We MUST find a cure, SOON!!!!!!

On November 17th my parents are going to be climbing for a cure. I did last year, but i'm not going to due to the fact that there will be other CF people there, and I don't want to get sick, as I am currently at my healthiest, but I am still raising money for it.
So i'm asking, if you would please take the time to possibly make a donation to help us find a much need cure for CF. We can't lose anymore people to CF!! Here is a link you can go to to make donations.
Thanks so much!!! ~God Bless

Saturday, September 24, 2011

Blogging Help!?!?

I have a question for all of my very techy blogger friends. If any of you have your blogs through blogspot, maybe you could help me. I am trying to figure out how to print off all of the posts i've done on my blog. I remember there used to be a spot where you could print it off, but now I can't remember where to go to do it.
If any of you could help me I would greatly appreciate it. The reason for me wanting to do it, is I'm planning a project with all of my blog posts i've ever done.
I would appreciate it a lot if someone could help me :)

~God Bless

Thursday, September 22, 2011

Staying My Healthiest

One of my friends had asked if I would share how I've been staying my healthiest on Cystic Life. ( so I thought I would share what I wrote on there for all you to read.

The last few times I was at the doctor, I was at my healthiest. I am currently at my healthiest. I was asked how I've been staying at my healthiest, and all I can say is I haven't changed much. I had recently started Zithromax 3x a week 2x a day 250mg. When I was in the hospital in May, after I got better they started me on it because studies have proven that Zithromax & Tobi together(which i've been on for a few years 28 days on 28 days off), fight off psudemonous(spelling) which I grew in my last culture. I haven't grown it in a very long time. The CF foundation actually now suggests that once you grow psudemonous you go on Zithromax. So That is what I've started, and then I had made a new years resolution of not eating any McDonalds, Burger King, or Hardees(as i would eat them quite a bit) and I have felt an enormous difference. I've cut back on the soda, and i've started eating healthier. That is what i've changed and so far i've been my healthiest i've ever been. So maybe nutrition and what you eat makes a different along with excersising and doing VEST definetly! 2 times a day or more. That is how i'm staying my healthiest.

~God Bless

Wednesday, September 21, 2011

Doctor Appt. Update

So, I haven't been able to blog for a while. I had some computer problems. The battery went dead, which turned out to be just a power cord. Oh, well now i'm back up and running and wanted to update you all on my doctors appointment I had last Thursday. It went GREAT!!! I am still at my healthiest. My glucose test went great! My kidneys, liver etc are doing great which i'm so glad to hear. The doctor is very very pleased with how i'm doing, and I had an X-ray and from what I saw it looked good ;) I am just so thankful to be doing so well. I am very grateful, and thankful that God has blessed me with being so healthy. Unfortunatly not many CFers are this healthy, and I will not take one single breathe for granted. Will try to write soon and do an update on what's going on in my "life". Have a great day.
~God Bless.

Tuesday, August 30, 2011

Test Drive

Having CF, you really don't know what a "real" breathe is like. To someone with CF the breathes we take are "normal" to us. We don't know any different, and someone without CF doesn't know any different either. Well, the other night while I was doing a VEST treatment, I was thinking, wouldn't it be awesome to take a "test drive" and see what it feels like to take a "real" breathe. Wouldn't that be awesome? To trade places with someone who has no breathing problems and see what their lungs are like, and they can see what ours are like? I think it would give them a whole new outlook on life. I just kept thinking about that....What If? What if?? SOON there will be a cure....SOON!!

Thursday, August 25, 2011

So Very Thankful

So as I sit here tonight, in my room browsing around on the computer, listening to music, while parents have a meeting, I was thinking how extremely wonderful this year and next year are/going to be. As I sit here awaiting the hopes of a phone call i've been waiting for, as I await the launch of the new iphone 5(hopefully white) and as I sit here I think, wow in just 2 1/2 months I'M GOING TO BE 17!!!!! Wow. I am so very thankful that i'm around. I live an amazing life, I love my life. I'm so thankful at how healthy I am, and how extremely great my PFT's are. I think about all those that lost their battles with CF far to young, I think about how grateful i am that i don't need a feeding tube or oxygen, or insulin. I think about how grateful i was of my Make~A~Wish trip. Tonight I am just Oh so very thankful!!

~God Bless

Wednesday, August 17, 2011


Here's the link to view the pictures!

Long Overdue Update

Wow, I am really slacking. I haven't posted very much at all this summer. I'm just going to give you all an update on how things are going. Things are going great! I'm feeling great, my summers going great. I am anxiously awaiting getting my new phone--SOON!!!! i hope :) We are in the process of possibly going to Arizona to see our great friends before the end of the year! So pumped, even if it's only for a couple days :) I go back to the doctor on September 15th for annual testing. That includes a glucose tolerance test(i absolutely love them!) i know i'm weird. Then I have an X-ray, then PFT's, then Doctor :) So basically that's how i've been doing,and what's going on in my world. I FINALLY after 5 months of being back from Bora Bora, i finally uploaded some pictures onto my facebook account. Here's a link to view them

Lastly I just wanted to let you all know, one of my great friends Jordan just came back from her Make~A~Wish trip. She went to the beautiful island of Hawaii!

And on a sad note, last week Tuesday another CFer lost her battle with CF. She was 21 years old. Breathe Easy Ashley!

Will try to blog more frequent! Hope all of you are doing well. God Bless

Saturday, July 23, 2011


So just a quick update. Things are going great over here. I am feeling great...minus this huge heat wave we have had here in Wisconsin the last week and a halfish. I don't mind heat, but when there's no breeze, i'm not a happy camper, neither are my lungs. They don't like it either. You know it's hot in Wisconsin when it makes world news HAHA! Bora Bora was sooo much nicer. Warm in the 80's everyday, but being by the ocean, and having a constant breeze it was PRICELESS! and PERFECT! I will be the first to admit, I complain when it's hot, and I complain when it's cold. LOL! ;) Otherwise, I am feeling good, doing great, and just trying to enjoy what's left of the summer. It seems to be going by so fast. Next week Thursday we leave for Ohio for my parents business convention. I totally LOVE them. So excited. We will leave Ohio on Sunday, and we're going to stay overnight, and spend some time in Illinois with my aunt and uncle. Then venture back Monday, so I can get my baby! Bo is also doing great. Well I suppose I should get some sleep. Have a great weekend. ~God Bless

Monday, July 18, 2011

Hola! i haven't written in over a month. I apologize. I just wanted to do a quick post saying i'm doing great. Summer's been going by soo fast. Just been visiting with family, hanging out, getting ready to go to Ohio for my parents business convention--SUPER FUN!!! so excited! I will try to post again soon. I apologize again tramendously. I will blog soon, and give an update :) Hope everyone's doing good. Love you all. ~God Bless

Wednesday, June 8, 2011

Clinic Update

I apologize for not posting an update sooner. I went to the dr. last friday(june 3rd), and first thing i did was my PFT's. Well lets just say...WOOHOO, i am currently my healthiest i've ever been. My lung function was 96%. The last time we saw that number was last August. I am very proud of the number, and intend to keep it that way. So I saw the dr. and he added 2 more meds to my routine. Zithromax (which i'm sort of allergic to, but since that was when i was younger we'll see if i grew out of it. so far so good) 2 pills 3x a week. So I take 2 pills on Monday, Wednesday, and Friday. so that's 500 mg, 3x a week. and then they added hypertonic saline(inhaled). Then i was able to get my PICC line out. Yay. I'm going to miss that thing. :( But i'm free now. I've been busy lately because on Monday my baby boy, my mini Yorkie, Beauregard(Bo) turned 2 years old!!!! that dog is the love of my life. he's my "main man" :) and my grandma had her 2nd new knee put in, so i've been taking care of my grandpa, making him meals, visiting with him etc..because he's 88 years old. It's nice spending days with him, like today I spend quite a bit of time with him, and he took me out for ice-cream after i picked him up from the hospital where he was visiting my grandma, and the stories grandpa tells are so great. We figured out that he got his diploma 75 years ago! Wow! he was only 13 when he got his diploma. I take advantage of the time I have left with him and my grandma, and whenever there's an opportunity to spend time with them I do. So, will write soon, oh, and in 16 days I get to see Rascal Flatts in concert at Country USA, an event held here in WI. I got free tickets for all 5 days, but I am for sure going to see Rascal Flatts. Woohoo. Have a great day. Love you all. ~God Bless

Wednesday, June 1, 2011

Did I mention I made the Paper?

Yup that's right, I made the Local paper. Ha! and I really didn't know about it. I mean, I sort of knew about it. The Local paper and Make~A~Wish had called about a month ago and asked if they could do article about it. We said sure. We thought they were going to call us about it, but they just went straight to Make~A~Wish for the info. We didn't know I made the paper, because we don't get the paper, my grandma told my dad and a friend told my mom. So now we have 2 copies of the article. Make~A~Wish is just so awesome!!! I love you all. ~God Bless

Tuesday, May 31, 2011

PICC Picture

Okay, so here is the picture I've been promising for ohh, i don't know--almost 2 weeks. Yes i've been slacking. This is the FIRST time ever i've had a PICC line without stitches. It's very different, but it's a new experience :) Well just a quick update, i do feel better, i go back to the doctor Friday and we'll go from there. So far i've been on IV antibiotics for 2 weeks and 2 days. Loving my PICC. :) Soo, anyways I will try to blog more from now on, things have just been crazy around here--in a good way :) I hope everyone had a great Memorial Day and honored those who have fought for our country and are serving our country to make it a better place. I hope everyone remembers Freedom isn't Free!!! ~God Bless

Wednesday, May 25, 2011

1 week since I got my PICC line's been one week since I got my PICC line. I apologize I don't have a picture uploaded yet. I will soon...PROMISE! So I also apologize for not posting for a while. 7 days to be exact. Things have been pretty crazy around here, getting into the new routine of the new meds I was put on. My new schedule is:

6:00 a.m.--1 IV med Ceftaz(mom hooks up that one)

10:00 a.m.ish--Eat breakfast, take vitamin, vitamin D, omeprazole, bactrum, enzymes, advair, flonase, VEST, inhaled albuteral, inhaled pulmozime, inhaled hypertonic saline.

11:00 a.m.ish--Try to start school by then or sooner :)

2:00 p.m.--1 IV med Ceftaz, Bactrum

3-4 p.m.--somewhere between there I do VEST, inhaled albuteral, inhaled hypertonic saline.

8:30 p.m.--1 IV med Levaquin, Bactrum, VEST(try to start around this time, sometimes I do, other times I don't)

10:00 p.m.--1 IV med Ceftaz.

So that is my new routine, probably for another week or so. I go to the doctor next week for a follow up, so I will post an update on that, and I will try to post before that. And I promise a picture of my PICC line. Love you all!! ~God Bless

Wednesday, May 18, 2011

Hospital Day 4-Being discharges???

So today(Wednesday) makes Day 4 in the hospital. Today the plan got changed quite a bit. They(the dr, and residents) decided that because I was making good progress with the IV antibiotics, that we should continue them for 1+ weeks. So that meant today I got a PICC line(will post pictures later). So, at 2:30 today I was taken down for my PICC line. It went GREAT!!! no problems, and everything happend on the first try. and this is the FIRST TIME EVER that I DON'T have stitches with my PICC line. Instead they used some kind of clamp. I am very happy and impressed. Sooo with all that said, i'm starting to feel better, no pain, I am GOING HOME tomorrow(Thursday). Woohoo!!! So this will probably be my last blog post from the hospital. For updates; check my fb accout, as I should post some. I will post pictures when I'm able to of my PICC. I am very impressed with this hospital stay because with my first IV, my 2 blood draws, and my PICC everything happend on the first try for everything!! woohoo. Will update later. Thanks for all the texts, and messages. It means a lot. Love you all. ~God Bless

Monday, May 16, 2011

Update: Day 2

Well it's been a full 2 days here in the hospital. I DON'T have pnemonia. I do still have stenotrophamonous(spelling?) and I have psudemonas(it'd been gone for probably 1+ years). BUT, they think I may have a lung fungus. It's sorta like "Farmers Lung"(for more info look it up). It's common in Cystic Fibrosis patients. No big deal, just something else to treatk. I have blood work in the morning that will test me for the fungus. That will determin our plan. So, i'm waiting for my bedtime blood sugar test and then probably to bed for me. It's been a long day--BUT I was able to have an Iced Caramel Machiato :) Have a great night! Love you all.
~God Bless

Sunday, May 15, 2011

Hospital Update & Pictures :)

Hey Everyone, just wanted to do a quick update for everyone, and share some pictures. I'm doing okay, still don't have that good of an appetite, on 2 strong IV antibiotics, and a pain med for VEST(because of the chest pain i've been having when i try to take deep breathes on VEST). i had a repeat X-Ray yesterday, nothing new, nothing gone away. I have a great IV. The new hospital is amazing!(see below for pictures). I'm getting my blood sugar checked before I eat because when i'm sick I tend to sometimes get high blood sugars. Will try to update more often, either on here or FB. Love you all!! Thanks so much for the text messages. It makes my day. Love you all so much, thanks for reading, and staying in touch. In honor of CF awarness month, and now that i'm in the hospital what better awarness, right? Have a great day!!! ~God Bless

Here are some pictures. Enjoy!!! This room is very very huge! Larger than most hospital rooms. The keyboard is so if I don't want to watch TV anymore, I can use the keyboard with the TV and use the TV as my computer screen. Talk about FB on steroids :) and another cool feature is that i have these cool neon lights on the ceiling and i can choose from 9 colors to make it, and the curtons are electric, so you have to push a button to get them to go up, or down. Definetly having that feature in my future house :) well i'm off to take a nap. Update soon. Love ya! ~God Bess

Friday, May 13, 2011

Todays The Day....

So today(Friday) was the day that determined what was going to happen. If I was going into the hospital, or if I was feeling better. Well...because i'm on Cipro instead of Levaquin, it takes longer to kick in, so i'm still home--not any better, and still feeling really crummy...more so then yesterday. It's harder to take deep breathes, and my appetite is horrible. For those of you who know me know I would eat all day long if I was allowed to, the last few days I eat maybe 1 or 2 times a day. That's it, mostly so I don't get an upset stomach from meds. It's not that the food doesn't sit right, it does, I just become NOT hungry at all!! So we're waiting to see what's going to happen. Keep checking my FB account, the group "The Joys of Having CF", or here.
So, we know who's on call this weekend, and we are supposed to call tomorrow and let them know what's going on. They have noted in my chart "may need to be admitted". Will update soon! Thanks for all the messages, and your thoughts and prayers, it means a lot. Love you all. ~God Bless

Thursday, May 12, 2011

Update: 2 days.....

Okay, so update from yesterdays appointment. We got to the new clinic(love it), and did PFT's. FEV1 was 93%. Not the worst, but definetly not my best. Then did X-Ray(when you get so many x-rays you can start reading them yourself) sure enough about a fist size spot of pnemonia/mucas. The dr. said it's either pnemonia or a big mucas plug-i consider them the same thing. So she perscribes Levequin, i didn't remember till we got home that insurance doesn't/and hasn't for a while cover it, and for 4 pills it's a little more that $250-for 4 pills. So we call her back, and today she called in Cipro. She's not very happy that I'm not getting Levequin becasue Levequin is a very fast working antibiotic. So we're supposed to call back tomorrow, and if no change at all then we're probably looking at a hospital stay. Which is what mom and I were expecting. So, I will keep everyone posted, if I end up going into the hospital I will try to do a blog update, if their internet has blogspot blocked then check my facebook account, or join/like the group "The Joys of having CF", and I will try to update. I will definetly try to do a blog update tomorrow and let everyone know what's going on. Thanks for all the well wishes. It means a lot. If we end up going to the hospital, it's no big deal :) just one bump in the road of many to come. We've gotten through so many, we will get through this one with smiles and laughter and positive attitudes, as well as the next ones. Love you all!!! ~God Bless

Tuesday, May 10, 2011

Just A Bump In The Road

Okay, so I hit another bump in the road about a month ago(thankfully after my Make~A~Wish trip). I'm 99.98% positive I have pnemonia-especially in my upper left lobe. *sigh* BUT that's okay. Just because I hit another bump in the road doesn't mean it's a bad thing. I was on my 28 day cycle of Tobi, so I did it a little longer than 28 days. Then I did a 2 week dose of Bactrum, and upped my VEST to 3x a day when possible. of this very moment. Not any better-if I must say so myself I think maybe a little worse. So I go in for my normal every 3 month visit tomorrow(Wednesday), and we already called ahead, they ordered a X-ray to be done, and said bring a bag just in case-and that they won't order a bed yet. So, if the X-ray looks bad(which by how I feel i'm sure it won't look to pleasent) and if PFT's are down(which by the way I feel i'm thinking they won't be the greatest) I'm probably looking at a 1-2 week visit to my new! hospital/clinic(sidenote-my clinic/hospital that i usually go to, joined with another hospital to make one big university/clinic/hospital--no big deal very exciting stuff) that just opened today. So instead of Fairview University Medical Center, I will not be going to University of Minnesota Amplatz Children's Hospital. Isn't that a long name. I was on their website today, and I clicked on the Cystic Fibrosis page, and they have the highest rated lung function for CFers ages 6-17 in the nation!!! I am so impressed and very happy to be going there.
So keep me in your thoughts and prayers, and whatever shakes out shakes out. No big deal. Just all part of the life of having CF, we go to the doctor, sometimes the hospital for a week(s) and then we just continue to live our normal day to day life. Honestly it has become a routine for me.
So what's a post w/o pictures: here's what my hospitals looks like that I go to and have gone to, and just a cute picture just because :)

This is Fairview(where I used to go to,
and will go back to when I'm an adult).

This is my new hospital that i now go to
the clinic is somewhere else but this is the
new addition and the hospital-the rooms
look huge from the pictures, and are very
cool, and i believe that is all glass. And below
is of the front enterance-different view.

And last but not least, a picture of my baby, who just got a haircut last week and looks like this again :) If I get admitted I will miss him like crazy! He is the light of my life. I just love him so stinkin much! I mean who can't love this face?

I will keep everyone posted. Have a great day. ~God Bless

Saturday, May 7, 2011

Happy Mothers Day

I just want to say Happy Mothers Day to all you wonderful mothers out there. But, I want to say a very special Happy Mothers Day to my very special mommy :) She is always there for me, she is always there when I am sick, she stays with me in the Hospital, she listens when I need someone to talk to, we laugh together, dream together, disagree together(sometimes more than we should), we have much fun together, and we live life together while making memories. Sure we may have out disagreements sometimes more than we should, but hey-we're human, and we are almost the EXACT same personality-so they clash, but in the end we forgive each other or just let the silly arguments go to rest, and all in all we love each other. I love my mom more than she will ever know. She is my friend, my mom, my home nurse :) but more importantly she is my hero, and I thank her very much for everything she does for me. I love with the bottom of my heart. Forever and Always, she will always be my mommy :) Happy Mothers Day Mom. I love you with all my heart!

p.s. this picture is 2 years old. I had just came out of the hospital(notice the PICC cover) :)

Sunday, May 1, 2011

CF Awarness

May is Cystic Fibrosis awarness month. The official "color" for CF is purple. So in honor of CF awarness I decided to change my profile picture on FB to a purple rose. This is the month we honor all those with CF who have passed away, have had lung transplants, and are still thriving, and still alive :) hehe! CF awarness is such a special place for me. I love honoring those who now "Breathe Easy", and have lost their battle with CF. We have lost such wonderful beautiful people. I pray for them and their family's each and everyday. Those who have had transplants, I pray for them every day, and am so thankful that they were able to have a second chance at living out their wonderful life, living out their dreams, leaving their legacy!!!!

So this month, if you find it in your hearts, keep CF Awarness in your prayers. <3 <3 <3 you all!!!

Monday, April 25, 2011

Lungs tell time...

Have you ever wondered what CF lungs look like compared to healthy lungs? Well as I was randomly doing things tonight this topic came to my mind. I know MANY people that have CF that have had Double Lung Transplants and it's given them a second chance at life. Do you ever wonder how bad those old lungs look? It's horrible. You wonder how they breathe, but then most of the time their on oxygen and don't have much time left, or are on the waiting list.
Here are 2 pictures that show pretty healthy lungs and pretty sick/damaged lungs:

**these are pretty healthy lungs**

**need i say anymore?**Damaged/sick
So, how does that make your appetite feel? Not to good. Compared to some smokers lungs this is good...compared to others this is BAD!!

I don't know about any other CFers out there, but I think that our lungs seriously know how to tell time...isn't around the same time of year, we get the same routine cold, sometimes get put on the same routine meds, sometimes get put in the hospital at the certain routine starts a trend, and tends to get real old-REAL QUICK!

I have been very very very fortunate to be 7 1/2 months HOSPITAL FREE!!! I am doing my best to try to keep myself healthy, altering my Tobi ever 30 days on every 30 days off. Routine.

Well my mom and dad thought I was catching something, so I had a perscription in case I got sick on my Make~A~Wish trip(which I didn't) and it was for a 14 day use of Bactrum. So I am currently on Bactrum. I feel great, feel very good, don't feel sick-but for anyone who knows me and my body, I can feel amazing, have no lung crackles and sound great when the dr listens to me, and then have an Xray and I have the worst case of pnemonia ever. Crazy I know. It happened in August 2009. The pnemonia was so bad they didn't want me to travel to my specialist in Minnesota so it was my first stay at my local dr. I felt great...HAHA...anyways if your super sick and feel good it helps you get better quicker cause you're not so rundown.

Anyways, this is just a little bump in the road, time to do more VEST, more excersise, and start my 1/2 mile to 1 mile run everyday again(the weather here in Wisconsin should FINALLY start getting nicer) but I'm not worried one bit....I WILL fight this. I WILL NOT go into the hospital. I WILL do everything in my power to stay healthy. I WILL FIGHT THIS FIGHT, AND I WON'T LET GO!!!!!!!!!

Have a great day ~God Bless

p.s. we're in crunch time for CF donations for the walk, if you are at all possible please donate. Thanks so much...the whole CF community appreciates it so much, and you're helping make more tomorrows everyday. Here's my donation website:

Sunday, April 24, 2011

Happy Easter and...Photo Shoot???

First I want to say Happy Easter to everyone. I hope everyone has a blessed day and celebrates and remembers the true meaning of Easter. ~God Bless

Second...what happens when someone wants a picture of me and my baby(dog-who doesn't like cameras?) Photo Shoot perhaps? "only" took 5 pictures to finally get a favorite :)

Do you notice the sort-of matching clothes :)

Take 1
Take 2
Take 3
Take 4(almost there)
Take 5-Perfect :)

Have a great day, and if you haven't already donated to my walk please do so at the link below, or message me. Thanks ~God Bless

Monday, April 18, 2011

We Need Your Help

Hi's that time of year again where we need YOUR help. It's walk-a-thon time. Sadly, I won't be able to attend our local walk, BUT I am still raising money for CFF. Raising money for Cystic Fibrosis is so crucial now because we are so close to a cure. Less than 15 years!!! That's tramendous. It's so crucial to raise money now because the more money we raise, that helps research progress even more, and helps give us the opportunity to either get the cure sooner, or come out with different medicines along the way. The money does not go to waste one bit! It helps every single step of the way, especially so the Cystic Fibrosis Foundation doesn't run out of money, because if that happens then they have to stop research and that puts everything on hold. So please, if you are at all able to anything is GREATLY appreciated. So if you are able to help at all, please help me at this is my fundraising page. It would mean everything to me if you could help...thank you!! Also, the more money we raise the closer we are to the cure, and the closer we are to people not having to go to the Hospital so much, no more IV's, no more yucky will make people healthier and live an extra long healthy life... IV IV 2 PICC LINE PICC LINE 2 HOSPITAL MAY IS GOING TO BE CYSTIC FIBROSIS AWARNESS MONTH WHEN WE GET THE CURE...THERE WILL BE NO MORE SCARS, BRUISES, AND NO MORE BRUISES FROM BLOWN VEINS(above) BLOWN VEIN #2 ***Oh, did I forget to mention, i've officially been hospital free for 7 months!!! i think i can make it a full year!!!***

Wednesday, April 13, 2011

i want it back

i want it back, the way it was a month ago. i want no cares in the world. i want the warm weather, the ocean, the wind...everything!!!! i miss it! i miss the freedom of waking up everyday knowing there wasn't a care in the world. i miss the relaxation. there wasn't a care in the world. reality was gone! i enjoyed the time with my family so much, i just miss it! i miss getting up early just as the sun had set, i miss watching the most beautiful sunset before i went to bed. i miss being away from everythign for a week, my cell phone didn't work for 9 days, it was very nice. i miss having no distractions like from a computer or phone, it was quiet and very nice to have no distractions. i miss the water...i miss the colores of the water. i just miss everything! mainly i miss not being in reality! so here i am 4 weeks later...back in reality! happy to be home, so very happy to have my Dog back, if it wasn't for him being in the USA, i dont know if i'd be back. i'm back in my daily routine of things, back to the school work, back to everything. missing not being in reality...but in the end reality isn't so bad...i just miss seeing this everyday:

but you know what...reality isn't that bad :) but i can't wait to start planning my next vacation...Hawaii, Key West hmm... ~God Bless

Monday, April 11, 2011

It's that time again...

It's that time again...Walk-A-Thon time. This year is the first time we are unable to participate and go to our local walk a thon. It's sad. We've never missed one. But we had plans over a year in advance, so we're not going-BUT- we are still raising money due to the fact that it's very important to raise money to keep CF research going, AND we are in a very crucial time in the CF community because we are so close to the cure. Probably less than 10 years away, and to make that possible any amount of money helps. So if anybody is able to help donate anything, please let me know! email me at or leave a comment. Anything helps. And for my fellow CFers it's that time again--Tobi time! it's my 30 days to be on. I like tobi, but also dislike it also. it makes me lose my voice, cough yucky stuff up, give me headaches in the beginning, BUT i don't mind because it helps me so much! i will do anything to make sure I stay healthy, and if it means losing my voice and coughing mucus up. well So be it! I'm going to do whatever it takes! to stay healthy and stay out of the hospital. Well I do apologize for not blogging more. I'll try to blog more. Hope things are going good. ~God Bless

Wednesday, March 30, 2011

Make~A~Wish Trip!!

So I know a lot of people have been asking for photos, and how my Make~A~Wish trip was. One word to describe my trip-BREATHETAKING!!!! It was the most amazing trip to paradise in the world. I wish everybody could expierence it in their lifetime. We left on Friday March 11th, and got home Sunday March 20th. We got picked up at about 6 a.m. and we headed to Minnesota airport. We left their and went to Denver, Colorodo airport. Then we left their and were headed to Los Angeles airport(LAX). So their we had a 6 hour layover, and at about 10 something at night we were on our way to Tahiti. When we got to Tahiti, at around 5 or 6ish we then caught a little plane to Bora Bora. about an hour ride away. Then from Bora Bora airport a boat shuttle came to take us to our resort, about a 30 minute ride. So we finally got to the resort at about 11 ish in the morning(on Saturday). So we then go to our room(no glass bottom floor hut), their was a reservation mixup. So where we were going to stay was a place for if you wanted quiet, meaning to get to the bar, restaurant, gift shop, or pool you had to take a boat for about 5 minutes across to get the to the main island. So I asked if I couldn't have a glass bottom hut, could we at least stay on the other side. So we did-no glass bottom hut-but closer to everything. So that night we went and ate the buffet and watched a show, that had hula dancers, and a fire guy :) it was very cool. We were all so tired we went back and went to bed after the show. Oh, and my nebulizer compressor also blew up the first day because they said it would work in the outlets...wrong. but my vest worked great! So then Sunday we had a free day. We got to do whatever we wanted to do. We chose to go to what they call a Pearl Market, and give you a tour of where pearls are from, how they get them etc...and show you how they get the pearls out of the clam. It was a pretty awesome tour. *did you know-that to get black pearls they have to put the clams in water from the Mississippi River because there's a certain mineral in the water*. So then we went to the Tahiti Pearl Market(it was right outside our resort, and I bought myself a loose pearl, and a ring. A friend of mine is going to help me design something for my loose pearl :) So then Monday was the Shark & Sting Ray tour. It was pretty awesome, except at our first stop-Coral Reefs, we got out of the boat, I decided to take a life jacket, thank goodness, and we had our snorkles and we were looking at all the fish, it was so awesome, but the waves had to be at least 2 ft high. So everytime you'd come up they'd take you back under. It freaked me out a little bit, so I didn't go in by the sharks and rays, but I did pet the Rays. My Sister, and Dad said the sharks were awesome! So then Tuesday we decided to go into town. That was awesome. We went shopping, and saw what the town was really like. Then Tuesday night we went to an american owned restaurant called Bloody Mary's. Oh my I highly recommend it if you ever go to Bora Bora. And our last day in Bora Bora(Wednesday) we just hung out, watched a show, and took pictures. It truely was an amazing trip. Thursday we cought the plane and went to Tahiti for 2 nights. Friday, we went into town in Tahiti, and shopping and got to see more of the culture. It was pretty fun(and then it started to rain) but stoppped within 5 minutes. and Friday night(our last night) we ate at a Terryiaki(spelling) place where they make the food in front of you-it was so awesome! and Saturday we cought our plane from Air France, and flew to L.A. and spend the night and Sunday we made it home. It was truely a trip of a lifetime. I wish everyone could have seen the colors, the water was so blue, it was never the same color in the same place. One word to truely describe the trip-Breathetaking!!! So here's a slideshow of some pictures I hope you enjoy, and I apologize for waiting so long to do this. Enjoy!!

Saturday, March 26, 2011

I am back!!!

I am back. I apologize tramendously for not posting sooner. I am going to try my hardest to get up a big post about the trip(hopefully before Monday). I just wanted to say I am here's a picture....more to come later :)

(I know this isn't the best picture. It's hard to see but there's 2 different water colors here, a dark and almost teal color...breathetaking)

Thursday, March 10, 2011

7 1/2 hours...bon voyage!!

The counting is finally coming to an end. in just 7 1/2 short hours we are getting picked up at our house, and heading to the Minnesota airport to catch our first, of 4 flights. Once we get their, our plane leaves around 11:50 or so. Then we are on our way to Denver, Colorodo. We have about a 45-60 minute layover there. Then from there we go to LA!!!!! I'm very excited about that. And after 7 hours there....BON VOYAGE!!!
Well this will be my last post for a while. Love you all, thank you all for the wonderful calls, texts, and messages wishing me and my family a wonderful trip.!! I love all of you, to my fellow CFers...stay healthy and "just breathe". ~God Bless

'just another day in paradise'

Monday, March 7, 2011

3 1/2 days!!!

In just 3 1/2 days we will be leaving for Bora Bora. We will be getting picked up at 6:00 a.m. to go to the airport, and leave around noon for Denver. From Denver we are going to LA and that is where we have the long layover. Around 7 hours to be exact. But, we have to get to our gate for our flight to Tahiti 3 hours early because of customs, so technically only a 4 hour delay. Not to bad. I love people watching :) and going to coffee shops and getting iced coffees :) Plus, we're in LA right? I'm bound to see or meet a celebrity at somepoint(hopefully). So then we're off. We are leaving LA at like 9 or 10 at night, so when we get to Tahiti it's 4 a.m. so when we get to Bora Bora we have the whole day to spend. So from their I/we get to spend the next 7 days in Paradise. So, if I don't get a chance to write a post before Friday...Bon Voyage!!! and will write after we get home, oh and share pictures!!! :) God Bless!!

Here's a link to a Rascal Flatts song off their new album: Nothing Like This. I hope you really listen to the words. Enjoy!!!

Thursday, March 3, 2011

8 days & Going Away Party we're only 8 days away from the most amazing trip ever! I am so excited. But, you know, it doesn't seem real at all. It sounds so exciting, planning activities and trying to decide what to do, what to get, what to see, where to go etc... but in the end it sounds sooo unbelievably amazing, yet not real. I feel like i'm living this amazing dream and waiting for reality to set it, but reality is I'M GOING TO BORA BORA!!!! I don't think this trip will feel real until I am sitting in the airport, waiting to board the plain. I wish everybody could expierence this amazing opportunity. It's truely amazing!! Yesterday(Wednesday) we had my "going away party". We got our itinerary, tickets, and all the awesome information! I got presents, my sisters got presents, we had pizza and soda, with cake. ooo yummy cake. My grandma and Aunt and Uncle came also. It was a really good time. I really enjoyed it. Sooo...time for pictures.
Click the link below and this will take you to some pictures I uploaded earlier. Enjoy!!!
8 days!!!

Wednesday, February 23, 2011

378 Hours?

In roughly 378 hours, or 16 days, we will be on our way to Bora Bora. Seems like a long time right? Not really. Starting next week things are going to be getting craz(ier) than normal. We have our hair appt's scheduled, mani/pedi's scheduled, plus we have to get some extra things to bring with us, so we have to do a little shopping, and when I say little I do mean little. And...we still have to get the adapters or converters for my VEST and compresor, since the wattage of my VEST is 300, and the wattage of my compressor(its small) is 200. So our week is going to be a little crazy starting next week. Plus--we have to meet with my wish granters once more, and plan my going away party which will be squeezed in there somewhere. On Wednesday the 2nd, I go to get my hair done :) and then go and hopefully get a swim suit, then on the 6th, my sister and I and maybe my cousin are going to get mani/pedi's(i'm just getting a mani, but they'd be getting both). Then on the 7th, my mom and I go and get pedi's, and she's hopefully getting her fake nails back...oh how I miss those on her. and then we're down to 3 1/2 days after that and we leave. Sounds stressful a little, but it's going to be all FUN!!!! I am so thankful for all the snow we've gotten the past few days because that's making me appreciate my trip more and more, so to all the 8+ inches we've gotten lately...THANK YOU!!! So will write soon.
~God Bless~

Saturday, February 19, 2011

2 1/2 weeks!!!

In about 2 1/2 weeks(20 days) we'll be heading off to Tahiti!!! It's coming up sooo fast. I'm getting really excited! I've been looking at pictures of the place, looking at the activities we're going to be doing and it just doesn't seem real at all. I'm getting very very excited about gettting to feed the sharks and sting rays. My sister and I are going to do that. I am also getting really excited about getting to go pairasailing. I've never done it before. 600 ft in the hair only straped in by a harness and parashute(sp) soooo awesome! If you can't tell I'm kinda a dare devil sometimes, especially when it comes to water sports. Where we're staying in our overwater bungalows, my sister and I have our own hut, and my mom and dad have their own to. It's awesome! I can't even fathom what an amazing time this will be, and I'm so excited to be able to have this adventure. and hey, maybe I'll even get to meet a celebrity with our 6+ hour layover in L.A. :) and hey, maybe i'll even get to meet John Travolta--never know. I just want to include a very peaceful, calm and beautiful picture I found of Tahiti. It's paradise. ~God Bless

Thursday, February 17, 2011

Top 10 Islands to see before you die!?!?

Did you know; that there is a list of 10 islands you should see before you die? I did not know that. As I was reading the list of the top 10 islands to see before you die, I realized I had only heard of a few of them. A little sad huh? Well I wanted to share this list with you, and I hope that in my lifetime I am able to visit all 10. So here's the list:

1) Bali
2) Vieques
3) Easter Island
4) Ischia
5) Chiloe'
6) **Bora Bora**
7) Key West
8) Penang
9) Galapagos
10) Palm Island Dubai

I hope you enjoy the list. Notice the *'s :)
1 down 9 to go!! Maybe this will interest you and you will have to visit some of them. I know it interested my parents and I. Have a great day!!

Wednesday, February 16, 2011

Nitty Gritty

Well we're down to the Nitty Gritty of my Make~A~Wish trip. We got the final flight times, the final plane/travel schedule. We have about a 7 hour lay over in LA before we head to Tahiti. I'm not so sure what we're going to do in an airport for 7 hours, but like I keep saying, it's LA we're bound to see someone famous ;)
I'm getting so excited. Later this week or early next week my wish granters, Scott and Donna, will be calling to get together to go over itinerary(sp?) and events, activities, and plan my wish party :) I am beyond excited.
My mom and I already scheduled our Mani/Pedi's, and my sister and I are going one day for her to get a mani/pedi and me get a pedi. Mom and I are going by a friend of hers so she's getting her fake nails-I love my mom in fake nails :) and a pedi, and i'm just getting a pedi by her.
So we're down to 22 1/2 days and counting patiently. Will keep everyone posted, and I'm just sooo stinkin excited to go to Bora Bora for a trip of a lifetime, and I am definetly coming back with an original black pearl and then a friend of mine, Jill, is going to help me design a ring to put it into. I'm so stoked!!! :) Have a great day/night :)

Sunday, February 13, 2011


Today I decided to do a post on what I am thankful for. Currently my Make~A~Wish trip is only...26 days away!! Going fast I know. I can't believe it myself. But, today I want to tell you all what I am thankful. I am thankful for being a believer in Christ. I know with him all things are possible. I am thankful for my family. I am thankful for all the things they do for me, they are always there for me know matter what. They go out of their way when i am sick to make sure things get done and everything is good. I am thankful for them. I am thankful for my Illness(CF). CF has taught me so much. It has taught me not to take things for granted, and live each and every day to the fullest, and appreciate everything. Through having CF I have met and have so many friends it's just unbelievable and I am thankful for that. I am thankful for my friends and my CF friends for always being there for me. For always knowing just how to cheer me up if i'm down, for sending that text message or email just when I needed it the most, for believing in me when I don't always believe in myself. Thank You. Lastly, I am so thankful for my life. The life has chosen me to live. It may not always be easy, or just a simple walk in the park, but it's my life, and I love it!

Thursday, February 10, 2011

Just Because

Sooo....we are down to 28 days till the trip!! I am getting so excited, and the trip still doesn't seem real. I don't think it will seem real until we are in the airport, or until we are in LA, our final departure place until we hit Tahiti. I am definetly looking forward to the weather. Tahiti today is supposed to be a high of 87, and today it hasn't left -13 all day :( My mom said on her way into town this morning the car said -24. yikes!! This WI weather is sure getting old. I was made to live somewhere with warm weather and an ocean, don't get me wrong I LOVE where we live but quite frankly in the winter Florida's looking better and better all the time. :)

So have a great day, and a picture...just because ;)

Wednesday, February 9, 2011

Awesome Appointment

Well today I had a dr. appt to see if the antibiotics worked from last month(when I had pnemonia), and they worked!! It was a great appointment. Last time the best FEV1(amount of air I can blow out) was 92%. My personal best is 97%. Which is awesome. See my predicted FEV1 is 101%, and how they predict that is, they compare me to somebody identical to me who doesn't have CF, and that's how they get the predicted amount of air I can blow(FEV1). So predicted for me is 101%. My personal best is 97% which is AMAZING for someone who has CF. Last time in January I was down from 97-92%. So that's down 5% which means something's up. So after 28 days of Tobi, and 2 weeeks of Bactrum, upping my vest to 3 times a day, and more excersing, I go in their today and my first blow is 93%, already better, then my second blow was 94%, and my last one, my all time best was 95%. Antibiotics worked...Tahiti here I come!!! I am all healthy! It's looking like so far i'm on track for a hospital free year. :)

So here's what my clinic/hospital look like(there's a bunch more that is not showing on the picture, it's a school campus, research center, clinic, and hospital). Next time I go back to the doctor in May, I will be at a different location(1 exit up) and at a different clinic/hospital. The pediatric center joined with a different clinic(which is great cause then there's more specialists, more dr's, more CF teams etc..) So this was my last visit to this place, until i'm an adult, then I get to go back.

Tuesday, February 8, 2011


Tomorrow(Wednesday February/9/2011) I go to the dr, to redo PFT's and see if their up. Last time my highest was 92%, and my best is 97%. So at my last appt. we figured out I had pnemonia(of course) so I was put on an oral antibiotic(Bactrum) for 2 weeks, and went on Tobi for 28 days. and I have increased my VEST therapies to 3 times a day instead of 2, and started excercising more. So with all that said, i'm praying my PFT's are at least 95%. I know I can do it!! I WILL DO IT!!! My PFT's WILL be 95% or higher!!! I gotta feeling that tomorrow's gonna be a good good day!! So I will update tomorrow when we get back (from the dr. and after meeting one of my very good friends on the way home) to give y0u all the good news.
Make~A~Wish update; I got presents in the mail for Valentines day :) I got a journal, body gel, and a book mark that says "Bon Voyage". They will be contacting us in the next couple weeks to plan my going away party :) So other than that, talk to ya tomorrow...bye

Friday, February 4, 2011

Well...what do you think???

So here is what I purchased about 2 weeks ago :) My parents told me I was a little crazy because of the price...but said if I wanted it I could. I saved my $ and bought this...for Bora Bora of course :) So what do ya think?

It looks better in person...I spent $48 the most i've ever spent for anything(besides my car). But hey, if it's for Bora Bora it's alright :)

Wednesday, February 2, 2011

Almost 4 Months Ago

I was looking through some old photos tonight, and noticed that in 5 days it will be 4 months since my uncle sold his farm. Wow! Has it really been that long? I wanted to share a few photos with you from the day of the auction. It does not seem like 4 months ago already. There's one cow I miss dearly--I named her Mama Red! She was my favorite, and she new her name if I called her. When I could call her name she'd look up and perk her ears to see me :)

Here's some photos from that day.

Me with one of the Cows :)

Me and Mama Red--Take 1

Her heads to big--Take 2

Take 3--Perfect :)