The Joys of having CF

The Joys of having CF

Thursday, August 26, 2010

New Look! & Change

okay, so i changed the blog backround. what do you think? i'm not so sure about it yet. it will take some time to get used to. i just wanted to put out a post and ask everybody--"What do you think about change?" i know with having CF you get used to change VERY quickly, whether it being medicine changes, or going to the hospital etc...what do you guys think about change in life in general. i am going to be very interested in seeing all of your answers. i hope you all have a WONDERFUL weekend, i know i'm going to be(shopping trip with my cousins=best weekend ever!). i look forward to seeing all of your answers.

here's a picture to start you all on a great weekend:

REMEMBER: sleep in, relax and enjoy your weekend :)

Wednesday, August 25, 2010


Now, you're all probably thinking this is a weird post. I am posting about one of the downfalls of having CF. Now I LOVE CF. I love the IV's, I like going to the hospital. I don't mind all of the extra baggage that comes with CF. Now as you have probably read, about my wonderful E.R. visit Monday night, I did have an IV so they could get blood drawn and fluids in me. Now they had to poke 2 times!!! to get an IV. Now for those of you who know about my CF, you may or may not know that my veins aren't so good. I have had LOTS of PICC lines(so many to where I can't have anymore in my left arm), and lots of temporary IV's and lots of blood draws, and by having all of that it makes it hard to get IV's in. So, anyways~~my veins in my left arm are usually GREAT(most of the time), and the veins in my right arm usually aren't(most of the time). Well, on Monday they tried to get an IV in my left hand--it was a success, then they tried to draw blood from the IV to get it all done with one poke. BAM! IV's gone! Stopped working! GRR!!! So that means try again. **sidenote--we have a rule that they are only allowed 2 pokes and if they can't get anything with the 2nd poke their done trying**. So the nurse is allowed 1 more poke, she goes for my RIGHT hand. I'm a little leary but if she thinks so okay. Well she gets the IV in YAY!! they draw the blood!! GOOD SIGN! and-------IT STILL WORKED!!! What a good nurse. So my point of this is that when you have medical issues sometimes your veins become weaker and harder to use. So with that i'm going to share some pictures of some of my past IV's i've had. The first picture is the second try from Monday, the second picture is from the first try from Monday, the third and fourth pictures are from September 09, and the last one is from January 10'. Enjoy!!

Tuesday, August 24, 2010

E.R. Visit

Well, what an interesting night. Let me start by giving a brief overview of what happend.
First: I usually go up to my uncle's(the one I have the strange connection with) at night who has a farm, and help them with chores. Well last night was something special. I went up like usual, *feeling great* let me remind you, and I had eaten a little bit at my grandmas house(who lives across the driveway) and something tasted different, so I stopped eating it. So, then I went out to the barn and I was feeling good. Well, once milking was done I had this odd feeling, so I want up to the house to use the restroom, and vomitted. YUK! but then, I felt better, so I went back out to the barn to finish cleaning the barn & let the cows out, and I couldn't do it. I sat in the milk house with my aunt, and then told her that I had to go up that something I ate wasn't agreeing with me. So I apologized and went up and called my dad to come pick me up *sidenote--my uncle and grandma only live a few miles away on the same road we're on* anyways in the 5 minutes it took my dad to come get me I vomitted again. YUK! so we get home and I take a shower and vomit again, and then I went to bed with my dog. Well that's when the excitement comes in, at around 10:30ish I had my dad wake my mom up because around every 5-10 minutes I was vomitting, and then I had vomitted blood. So around 12:45ish I told my mom I wanted to go in. So we get in our truck(my dad had to carry me, I couldn't walk) and I layed on the back seat. I had asked my mom on the way there to call my uncle(who is an EMT) and see what he thought we should do, and he said to keep taking me in, and if we thought I needed an ambulance to just call 911 and he would hear the page. So, anyways my dad drove around 70-80 mph the whole way there, and to everyone's surprise there was NOT 1 police car out the whole time. So, we get there and I vomitted right when we were checking in (i didnt vomit the whole 20-25 minute ride), and then they take me back to room 9. So the nurse comes in and does bp, etc..then the Dr. comes in. I have had this Dr. before and like him. So he said to do some blood work and hook me up to some fluids(1 liter of fluids), and some nausea medicine. So they come in to do the IV(i love iv's let me mind you) and they did my left hand and got a good vein, well they tried to draw blood from the same vein and BAM! IV stopped working (also keep in mind that I have some not so good veins from so many iv's etc) so they try in my right hand-good vein again, and they draw blood and IT WORKED! so then I get hooked up to my IV and then I was allowed only ice chips for a little bit then the Dr. suggested some juice(apple) =) So, then I start feeling better and we go. We got home around 5 a.m. or a little after. WHAT A NIGHT!, and the most interesting thing is, it had NOTHING to do with my CF at all!! WOO HOO! CF(check good) so, i'm feeling better as I'm typing this, and maybe(hopefully) I can go help my uncle in the barn tonight but if not, i'm sure he'd understand. So there's the story of the wonderful E.R. visit. Well off to take nap ;) Have a good day!

Thursday, August 19, 2010


Good Morning! I haven't posted for quite a while, and I apologize. So, Today i'm going to try to get back in the swing of things. So I want to talk about Make~A~Wish.
Make~A~Wish is a foundation that grants wishes to sick children with illness's, such as Cancer, Various disorders that cause you to be sick, and go to the hospital quite often, and even Cystic Fibrosis. Yes you heard right. Most(not all)but most people from ages 2 1/2-18 who have a disorder like some of the ones I listed qualify for Make~A~Wish.
You can wish for just about anything, trips, pools, meeting famous people, shopping spree's, ANYTHING! and yes, I qualify for Make~A~Wish. I was offered my Make~A~Wish when I was 2 1/2 years old, but my parents turned it down and said we'd do it when I was older so I could choose my own Make~A~Wish. Now that i'm 15 1/2, I have been thinking about seeing if I still qualify and if so, putting in for my Make~A~Wish. To find out if you're eligable for Make~A~Wish, you either have to have your parents or social worker nominate you, and then if they think you qualify here are the steps that have to happen;
1)Have someone Nominate you
2)IF you qualify Make~A~Wish will call you and get some info from you
3)After they call you they will send some paperwork to your doctor(s) so they can say if they think you're eligable
4)IF your doctor(s) think you're eligable you will get *I believe* a letter in the mail saying if you are or are not.
5)Then *I believe* the Make~A~Wish person/people will come sit down with you to find out your dream
6)They go to work and your wish is Granted!
--It's a Wonderful thing. *When* I do mine I will let everyone know and keep them posted.
But the reason i'm writing about this is because I'm so grateful to all those people who donate money to the Make~A~Wish Foundation, because if it wasn't for you, makeing people's wishes come true would not be possible, so if you are someone who has ever donated money the the Make~A~Wish Foundation, I want you to know how grateful I am for you, because any little bit you do helps someone's dream/wish come true!

Remember; "Dreams DO come true, they really do"

Tuesday, August 10, 2010

~~Climbing for a Cure~~

On November 18th 2010, my mom, me, and some others are doing "Climbing for a Cure". We are going to Milwaukee Wisconsin(which is about 3 1/2 hours from my house) and we're going to be climbing the tallest building there, which is I believe like 49 floors, and 1,000 something steps. Don't quote me on that, I could be wrong. What we are doing is I'm making a goal(money) that I want to hit, and we're having people donate, and or come with us, and all the money that's donated is going to CFF(cystic fibrosis foundation). So, if ANYBODY is interested please leave a comment, and I will definetly get back to you with some information. I'm excited and going to start training/working out to get in better shape for climbing ;) We'd really like to have a couple *teams* there. So if anyone's interest again let me know. Thanks!! Have a good day =)

Monday, August 9, 2010

My "strange" Connection

So, my topic, My "strange" Connection has to do with my uncle, DaWayne, and I. We have very odd and neat connections. I believe that these connections have made us closer together, and made us a bond that is truely amazing. My uncle is such a nice person, and I would like to share our connections.

1) I was born on November 12th.
....My uncle and his wife were married on November 12th.

2) I was diagnosed at 3-4 months old.
....That same day I was diagnosed, was also his birthday.

You see those are 2 odd and neat connections, and I am very proud to call him my uncle. He means so much to me, and when I get confirmed this coming December, I asked my uncle to also be my sponsor because he means so much to me.

I apologize that I don't have a picture of the 2 of us, but I will post one oneday...

Wednesday, August 4, 2010

Top 5 things I love about CF

Todays post, the top 5 things I love about CF, is just something I thought I would do so you can all see what I love about CF, and maybe you agree with some of the things.

1) Strength-I believe that people with CF have a stronger Strength, and they are able to handle more things than most people because they know having strength keeps them healthy =)

2) Differences-I believe that CF makes you different, In a good way. It makes you who you are as a person. It makes you who YOU are.

3) Life-I believe that having CF makes you realize what life is all about and what life truely is about. I believe that if you have CF or any other illness for that matter, I believe that it makes you really appreciate life, and makes you learn to live your life to the fullest EVERY-SINGLE-DAY!

4) Determination-I believe that CF gives you a determination or shall I say will power to live life, and not be afraid,and I believe that CF gives you more strength and you learn at a very young age how to live life, and not be afraid.

5) My Life-I love my life with CF, I wouldn't have it any other way. I believe that God put me on this earth with CF for a reason/purpose, and I'm going to live out my purpose and not let him down. I love waking up and being thankful that I'm here another day. I love telling my story to people. I love being different. I am thankful that I have CF. I wouldn't have it anyother way(well at least until the cure somes). I am not going to do anything in my power to make CF stand for "Cure Found". I believe that each and every person who has CF, is a gift from God, and is amazing in there own special way. I hope everybody knows how SPECIAL they are, and I hope that you don't forget it!

I want to sum it up by saying I love my life. Sure it may be difficult,and stressful at some points, but that's life. You just have to move on. We may hit obstacles in our way, but we just have to fight through them and move on and wait for the another one. I want everybody to understand how precious life is, and I believe that if you have CF, you are some of the strongest people I know, and I truely believe you understand just how precious life is. I want you to remember that "life is a journey constantly turning down an unknown path". I hope each and every one of you remembers to life your life to the fullest EACH and EVERY day! Because remember; "live each day as if it were your last, because tomorrow's never promised"

Tuesday, August 3, 2010

So you're the one

I always love when we run into friends we haven't seen in a while. Usually right after my mom or dad says, "this is Paige, you probably don't recognize her", which is usually true because most of my parents friends haven's seen me since I was very young. I love it when they you're the little "sick kid", or "you're the one". I laugh everytime they say that. It makes me wonder if they actually know what I have, or if they are afraid they will hurt my feelings asking me how i'm doing, thinking I may be sick or something.

You see, many people don't realize how far CF has come. Most people don't realize the research that has been coming out, and most people haven't heard about the cure. I wonder if people really.

Now, I hope that it doesn't bother you if someone says, "you're the one", or the little "sick kid", because in all fairness--they have no idea about CF.

I hope that we are able to start educating and get around to the different states and start to educate people about CF, and how just because you are a person who lives with CF or anyother kind of illness, that you are NOT different. I wish you all a very wonderful day! and remember,

"nothing great was ever achieved without enthusiasm" ~Ralph Waldo Emerson

Monday, August 2, 2010


Now I first want to start out by saying---WE HAVE INTERNET!!! this is great, because the whole month of July we had internet a total of 9 days. So anyways we have a new internet provider and all is good.
So, now onto my topic, exercise. This past weekend we went up to Ironwood Michigan by some friends of ours who were having a get together. Where we were in Ironwood, we were right by the water, I believe Lake of Superior, anyways, there is sort-of a mountain there, so we decided to take one of the trails, it was called Rainbow Falls trail, which let to a very pretty water fall, anyways, the trail said it was 3/4 of a mile. HAHA!! it was more like 2 or 3. It was very long, and we were in the woods which made it a little more challenging because it was a dirt trail, with wooden bridges, lots of steps, uphill, branches, etc...Now, I really enjoyed the walk/hike. It was very fun, and I was thinking about half was through, about CF. I had started getting warmer on the hike, and I do admitt, I was caughing quite a bit more, and my chest got tight from the humidity, and then I looked back at my mom and two friends, and they were warm but it didn't seem to phase them. It didn't even phase my dog. But, on the way back I had to stop on a bench for a little bit to take a rest, and at that point I got to thinking, look at CF--compromised lungs, asthma, and I was able to climb the mountain. Do you know how georgous it was(i'm kicking myself, that i forgot to bring my camera with). It was very pretty, and all I kept thinking was, "why is this more difficult for me". I love doing things like this. For a mere 3 seconds I got a little mad at CF, but then I said to myself, "don't complain". You are who you are for a reason and a purpose. Just because it may be a little harder to do some things DOESN'T mean you are different by any means. In fact, I must say(i was ahead of everybody the whole time), but that's not my point, my point is that exercise is an amazing thing, because it helps your lungs, and yes even though it may be harder to do some things, that's okay. It's my life and I love it. I hope that made sence.
I hope you all had a good weekend and i have been watching the hockey movie, Miracle and there's a line in there I love- remember; "who do you play for", I play for...The United States of America" so I hope you all think about that, I think it should be, "who are you fighting for", I'm fighting for...The Cure for Cystic Fibrosis"