The Joys of having CF

The Joys of having CF

Thursday, September 30, 2010

Firsts for Me

next friday october 8, i will be going with a good friend of mine, and getting mani/pedi's. this is a first for me!!! i've never had a mani/pedi before. i'm soo excited. i love expierencing things for the first time. it's so awesome.
another first i got to expierence(that i remember) is getting poked 6 times for my IV last week. yes you heard that right. 6 times. i don't remember ever having to get poked that many times. i have a rule that they only get 2 try's and there done, but i knew i really needed this IV so i let them poke more. it didn't help that i was becoming dehydrated so my veins weren't happy in the first place, and it didn't help that i have rolling veins, so my veins didnt like staying in one spot. so anyways after the fifth poke i told the second nurse(the first one stopped after she missed 2 times) to try a hotpack. and wala-first try got the IV, and it was a good one let me tell you. i have a bruise on my left arm that oh my word is very large(i'll maybe post pictures later) but you know what. it all worked out. but hey a bright side--i needed blood drawn at the same time, and the phlebotomist(sp) got blood first try. thank goodness. and the next morning they needed blood again, and first try again. it seems to work better when they listen to you, because you kind of know your body a little better, and know tricks that work, and know where the best places and wors places to get IV's. so i think it's a good thing if you pay attention, and don't be afraid to speak up if this ever happens to you, and don't be afraid to make rules like i have about 2 pokes and you can't try anymore unless i say so. because you, and only you knows your body the best.
so, hope everybody has a great friday and great weekend! i will definetly post pictures of my lovely mani/pedi :)

Tuesday, September 28, 2010


i was able to come home yesterday(Monday). i was still really tired, but overall i was feeling pretty good. cough was better-not gone-but better. sore throat gone. conjested head-better. goofy bacteria-still there!
so we called my specialist in mn, and told them i was coming home, but with no antibiotics. this concerned them, so they now want to see me. so next week tuesday i'm going to minnesota to make sure my lung function stayed up(i'm sure it did), and to possibly be put on an oral antibiotic to fight that other bug. not the worst.
Make~A~Wish update--still waiting to hear from them.
so i hope everyone has a great day, and will keep you updated :)

Sunday, September 26, 2010


well it's day 6 in the hospital. fingers crossed but it looks like tomorrow is freedom day :) just have to wait and make sure tomorrows x-ray still looks good.
not eating the greatest, but better than when we came in.
as for the cough, it's quite a bit better. i can sleep through it, and oh my word the things i've been spitting up. i never realized how gross and horrible the stuff that's in your lungs is. it's bad.
and i grew another bacteria. for years i always grew pseudamonas(a lung infection), and i would be on bactrum(antibiotic). well i grew a different bacteria(i can't remember the name) but it's pseudamonas's cousin(the name starts with a T, but i can'r remember) anyways i'm on bactrum again to get rid of the infection. no big deal. just another part of cf.
oh, and the big news......i still have my ORIGINAL iv. yes you heard that right. it hasn't blown. amazing!
so anyways i will try to keep my blog updated and keep fingers crossed for tomorrow.

Wednesday, September 22, 2010

In the Hospital-Day 3

hey everybody, just wanted to give you an update to let you know i am in the hospital. i came in on monday around probably 5-6. time went by so fast i'm not really sure. i started not feeling good saturday night(while in milwaukee for the weekend). i had a sore throat-not the worst. sunday morning-very bad sore throat. the ride home on sunday was miserable. monday morning my chest was tight, and the sora throat was gone. well anyways we went that afternoon to my local dr. he did an x-ray and things looked good. BUT i was down like 7lbs in 2 days. Not Good for a CF patient. so thats when we had no choice and the dr. said-you're in!! i was admitted because with losing all that weight they didn't want something crazy to happen and then have pnemonia really start, so they are doing antibiotics for percautions.

so i had packed a bag(i had a bad feeling) my mom didn't. so we get our room and then time for iv. i have really bad veins so it took a few tries. the one time they had the iv and then my vein rolled away. DANG! so now i have a HUGE bruise on my arm. so anyways i am on zosyn. i'm in until i start gaining weight. my specialty CF dr's in MN are in contact with the local dr. daily. NO PICC this time so we're praying that the one in my right wrist doesn't blow. i try not to use it much(typing is an exception). i'm supposed to be doing at least 3,000 calories a day and yesterday i barely did 1,000. so i'm not out of here until i'm able to do that. losing 7lbs in 2 days is not good. they even tested me to make sure i didnt have diabetes(thankfully no). j

just wanted to give you all an update. bye!!

cant wait for make~a~wish =)

Sunday, September 19, 2010

leave your mark

this post, leave your mark, is about what you want to leave on this earth. what do you want your legacy to be? what do you want to be known for? do want to be known for doing good, and making a difference? what is it for you? , What is your mark?
i was recently reading the poem, "Footprints in the Sand" and thought that this fit in so perfectly with this post. i hope you all decide to leave your mark, and do good, make a difference and help people, live each day to the fullest, and leave your footprints in the sand.
i hope you really think about this and i hope you decide to leave your mark.

Thursday, September 16, 2010

CF is NOT a disease

most people think that CF is a disease. well sort of, but the phrase illness sounds a lot better. i had one doctor tell me(Dr. Warwick), and sort of give me a lecture one time about calling it a disease. he said, "CF is not a disease, because if it was a disease everybody would have it, because a disease is contagious,". he told me, "Paige, you just have an incurable illness". and after that i thought wow! so true. CF isn't contagious because if it was, man everyone of my family members would have it. haha. so, i would like to inform people that you do NOT, i repeat DO NOT have a disease, you just have an incurable illness. so maybe that will make somebody's day a little brighter.
let me just say that was the longest dr's appt, i think i've ever had(Dr. Warwick created the vest), he was filling in for my one dr, Dr. Carlos Milla(who is now at Stanford, and helped Dr. Warwick create the vest). this dr loved to talk, i mean loved to talk, but he did have tons of knowledge. *he is also the same dr. that created the vest*

everyones opinions are different/unique in their own special way

i was recently looking at somebody's facebook profile, and i love reading my cf friends profile's to see how they describe cf (if they put it in their bio) one person had--life threatning illness, another person had, life shortening illness, somebody else had this horrible illness kinda get the point of how everybody describes what cf is in their own special way. me personally i describe it as an incurable illness. there are many ways to describe what cf is. i love just looking to see how people describe it in their own words. its so interesting.
i believe that everyone has the right to have their own opinion. i think its great seeing how people describe it, because you can kinda get/feel how their perspective on cf is. i hope that made a little sence, but i want to thank everybody for having such very different opinions on cf. it makes it so interesting to hear everyones opinions on cf.


Tuesday, September 14, 2010


hasn't set in yet. i feel like i just won $1million. i have never had such a mix of emotions before. since the make~a~wish, i was just a 15 year old living my day to day life, trying to figure out how to help make a difference in the world, and in people's life. i am still that person, but make~a~wish has made me see life in a different way. it has tought me that no matter how big you dream, your dreams will come true! i want everyone to remember that you must always keep dreaming, never loose sight of your dreams, and always dream big, and remember your dreams will come true. you have to just have faith in yourself, and you must never stop believing!
*remember* dreams do come true...they really do!!

***another hint***

Monday, September 13, 2010


sooo...the make~a~wish people came over, lets just say amazing. i have picked out my wish. i will give some hints but won't say until everything is approved. lets just say i'm amazed, and it's so surreal that my dreams coming true. it's going to be a wish of a lifetime, and i can't wait until someday when i'm able to donate money back to make~a~wish and help some child get their wish of a lifetime.

so breathtaking...*hint*

Sunday, September 12, 2010

Don't Stop Believin'

i hope everybody remembers to not stop believing. belief is something everybody must have, just as you must have faith. i heard a quote one time, "you must always have faith in each other, but you must always have faith in yourself". i thought that quote was amazing.
have you ever thought what belief means? do you always believe in yourself? or sometimes do you just stop having belief in everything. i believe that if you don't have belief in your life, your life won't mean so much. if we stop believing our goals and dreams won't come true. if we take the time to have faith, and believe-you will be surprised how your life changes.
my life has changed, as many of you know, tramendously in the past month.
i put in for make~a~wish, got a phone call from them, got approved, got an evelope in the mail from them, got a phone call, and tomorrow night(Monday) my wish granters are coming to our house for a visit to get to know my family, and find out what my wish is. i totally believe that if i would have stopped having faith, and stopped believing that none of this would have been possible. i strongly suggest that you should have faith, and don't stop believin'
I highly suggest that if you have never heard of the song, Don't Stop Believin' by Journey, I think you should give it a listen, because it's in my list of favorites.
and i want you to remember, no matter what health issues occur, keep moving forward, keep your faith, and don't stop believin. because only good things will happen if you just remember don't stop believin, and you must always have faith in each other, but you must always have faith in yourself.

Friday, September 10, 2010


i am amazed to be even writing this for all of you to read. so if any of you read my blog, you've probably read all about my make~a~wish journey. as many of you know i qualify for make a wish, and how there are wish granters that will be calling us to set up an appt. to come over to find out my wish and get to know me a little better. well guess what....THEY CALLED!!! WHOOT!! they are coming over Monday. im so amazed and thankful for everything in my life. i'm thankful for the wonderful people god's placed in my life. i'm amazed at my life and want to thank all my family and friends who are part of my life, whether it be knowing you personally or via the internet or via blogs. i just want to take this time to say; Thank You! I couldn't do this without you!

Monday, September 6, 2010


what does wish mean to you? i have been thinking about that a lot lately. i want you to imagine that your wish/dream of a lifetime is finally coming true, and you can do ANYTHING! you can go on a vacation, meet someone famous, be something for a day etc...imagine that your one true wish/dream was coming true, and the sky's the limit. just imagine that. what would you do if you could do anything! no cost to you, the SKY's the limit. what would that feel like? what would that mean to you? what would your feelings be?
i have that opportunity at this very moment. i am planning my one true wish/dream in life. it's very hard to imagine that the sky's the limit. my feelings are overwhelmed. i am so happy it brings tears to my eyes. at night i think of my wish/dream and i just start crying, because its so hard to believe that my wish/dream is COMING TRUE! reality hasn't set in. i think about my wish/dream ALL.THE.TIME. when you can think about it all the time, that means it's THE.ONE. i am so thankful for number 1)my lord and savior jesus christ. 2)my parents, for not doing my make-a-wish when i was younger and letting me choose it myself. 3)make~a~wish for allowing me to qualify and for going to help me make my wish/dream come true. theres not one second, minute, hour, day, or moment that doesn't go by that i'm thinking about my wish/dream and there's not one second that doesn't go by that i almost start crying, because i am so grateful, thankful, and happy.
i want to end with what wish stands for. it was in one of the packets for my parents that we got from make~a~wish, and i think it sums everything up.

Wander.... Through your memories to the time you were a child. What did you love? What made your heart beat faster? Where did you dream of going? Who was your hero? What made the sun rise? What were your last thoughts when you were going to sleep? What did you dream you would one day be?

Imagine.... Imagine you have a wish. Close your eyes and experience the magic of wishing. Imagine how a wish would feel, a wish that could come true.

Stop.... and let your child do the rest. Children wish so beautifully all by themselves!

Hold.... Your child's hand and reach for the stars together. Forget adult cares and worries, thoughts of bills, hospitals, and treatment plans. Allow your child to reach out fot the wish that will come true, reach out for hope, strength, and joy!

Saturday, September 4, 2010

My "coming" true

today is a very great day! i am in the mood of crying, laughing, hugging family members, smiling, jumping with joy, and some sadness. why you ask all those mixed emotions, well remember about a month ago i believe it was when i had talked about the make~a~wish foundation, and i had been nominated from my mom, and how the dr's had to approve of my medical health to make sure i fully qualify...well guess what-----I QUALIFY!!! yesterday afternoon, we got the mail and there was a large envelope from make~a~wish. i tore it open right away and the only words i was able to see was "paige had been medically qualified" and i was so excited. those were the first words i read and finally read the whole thing later tonight right beore i decided to write this. i am so happy i could cry, laugh, hug, smile, jump w!ith joy, and the only sadness is knowing that some people will never get this opportunity, or some child passed away to soon before they could make their "wish". i feel so blessed, and thank god so much, for this wonderful opportunity. i am planning what my wish is, but all i know for sure is that i know the main part of it, just with out the details. so now we are waiting for a phone call from our wish granters(people who do like the anicial visit with the family) to set up an appt. to come to our house and plan my wish. i am so speachless right now, and i am so honored to be blessed so much, i only hope one day i can help some little child's dream come true, just like mine is going to. i want to end with a poem that was in one of the pamphlets they sent along for us to read, its absolutely INCREDIBLE!

What is a Wish?

When I go to sleep at night,
I dream in color, not black and white.

I dream of things both big and small,
like playing in the band
or shopping at the mall.

I dream of what I'd buy if I could,
Clothes, music, toys, etc...
Everything sounds good!

I dream of places both near and far,
And how I might get there-
By plane, bus, train, boat, or car!

I dream of what I would like to do,
If I could have any job to go to.

I dream of meeting a famous person-YEAH,
What would I wear, what would I say?

To Go, To Have, To Be or To Meet,
Make your favorite wish-
We'll work to make your wish complete!

Thursday, September 2, 2010

2 months and 10 days

in 2 months and 10 days i turn 16. yes the big sweet 16. now at 16 it means i'm almost done with school, almost time for college, almost time to drive, maybe time to get a job-maybe, it means 4 more years till i'm 20. it means i've officially had CF for 16 years. WOW 16 years. it doesn't seem that long. i'm very excited to become 16, because i know that if i keep doing my medicines and treatments like i need to, i will be as healthy at 16 as i will be at 36. i hope you all enjoy turning another year older. i know i do. because that's another year that i'm beating the odds of having CF. another year of being healthy. another year of fighting for a cure. and another year of trying to make CF stand for Cure Found!