The Joys of having CF

The Joys of having CF

Wednesday, December 30, 2015

Letter to 2015

Dear 2015, 
To start...we made it. At some points throughout this year I wasn't sure if an end was in sight. You started off great...
Let's begin, first I had gotten a small promotion at work. My goals were set high. Then April/May hit and man, it's been crazy ever since. 
In May I got a job in Minnesota, I was so excited to finally "be on my own". I had my own apartment. Things were going great. Then, I got sick. CF decided it needed some attention. After a week in the hospital, my emotions tested to the max, I was sent home on IV's. Nothing unusual. Then it was suggested I move back closer to home. 
I was a little crushed. I had to leave my home that I loved. It was mine. I wasnt to upset to leave where I was working as I was able to transfer locally. 
So in July, somehow God was watching over me, one of my neighbors parents wanted an apartment, and mine was right next door to her, and they even needed furniture, so everything was worked out and  they got my apartment. I'm not even sure how that happened, but I know it was all in Gods hands. 

This year I also became an aunt for the first time, and oh my gosh do I love that title. Such a blessing. 

That now brings us to current. Last month I turned 21. A milestone years ago I was told wouldn't happen. I went to Beverly Hills with my parents and amazing friends to celebrate. Then we had the holidays, my favorite time of the year, and I was blessed with yet another holiday season with my amazing grandpa. 

In conclusion, even though we're ending a little negativity with health issues(see last blog post), I write all this to say, Thank You 2015.  

Thank you for all the craziness this past year. Out of all the past few years I will say, this has been one of the worst, and best. It's been one of the worst because there were times I didn't know what was going to happen or how things would turn out, but somehow everything always figures it's way out. But it's been one of the best years, because besides all the bad, this year has made me so much stronger. I've learned a lot and grown a lot. I've come closer to God and learned to leave everything up to him and it'll work out. I've learned to be thankful for the little things, and in the end it's made me a much stronger person. 
You started out a good year and I would've never known all that was going to happen. I guess the saying is true; "I didn't know my own strength". But now I know that with my faith I can conquer anything, and I now know my own strength. I've gotten to live the saying; "you don't know how strong you are, until being strong is your only option", and I must say...I AM strong. I will NOT break. I AM a fighter. With those three things, and my faith...ill be alright. I've got a lot of living left to do. 
Thank you 2015, you've been swell, but I think we'll end here. 

2016...welcome. I can't wait to see the adventures this year. 

~God Bless

Thursday, December 17, 2015

The Reality

For so long I think I've taken CF for granted. I've taken for granted the great health providers I've had. The great medical facilities I've gone to. But most of health. 
For as long as I can remember I've never had "serious" lung issues. The infections have always been able to be treated. My sinuses have always looked great. Never any polyps or build ups. I've pretty much had "perfect" CF health, in the eyes of the CF world...until the last 2 years. 
The last two years I'm not going to lie have been a little rough. Two years ago I switched from the pediatric CF team to the adult CF team and oh my what a difference. It's been a learning experience for sure. 
In the last two years my health has decreased. My lung function has gone from 100% to 89%. I've gone from never coughing stuff up, to now coughing up lots of stuff, sometimes even blood. I've gone from taking good deep breaths to being wore out after coughing. I've had a few hospitalizations(one of which left me with no appetite for food-a loss of 15+ pounds, which is still in affect today), and another which left me with nerve damage in my hand(thankfully that has gotten somewhat better). I've Doctor hopped to find a new doctor...which I'm still also doing. 
Overall the best word I can find for the last two years is roller coaster. 
Now currently, I am waiting to hear back from a different CF center in the state I live(the center I went to from 3 months old to 10 years old). I've been doing tons of research to find answers, to find the right care for me. I've taken it in my own hands. 
At my last appointment I was approved for a new VEST which is great: 
I asked the doctor if part of my problem is my old VEST is 10+ years old and not a hill rom, to which she said "prossibly". So step one-I got my new vest. 
Step two-I had a visit with an ENT. Which also unwrapped a small piece of the puzzle: I have a huge polyp in my left side so that could be why I have a constant runny nose and stuffy head. The doctors solution was immediate surgery. I know I need the surgery. I am not denying that but I am denying her being my doctor. 
My prayer is that I hear back from this other CF center soon so I can get on the right track. 
Now I say all this to say; don't worry this post isn't to scare anyone. It's to make aware that sometimes YOU have to take matters into your own hands. But it is also to state don't take your health for granted. 
Going into 2016 I plan on it being a fantastic year to remember. Even though I have to have my first surgery ever(besides the immense amounts of PICC lines). It's something that eventually would be inevitable. I'm very blessed that I've gotten to wait 21 years. 
Even though life seems crazy now, I WILL come out stronger. I will stand up for my health and fight to make sure I keep myself healthy. I will do whatever and go wherever to find the answers. I will be an advocate for myself. 
Somedays I stop and just look back on this year and think oh my gosh how did I make it through, and the only answer  I have is my faith. I know deep down that God has a plan. Only he knows what it is, and oh, some days I wish I new what it was but I truly feel he has big plans in store. 
As of today this is my current reality. A reality I kinda always wanted to blur out, but that's selfish of me. Compared to some people with CF I have it easy. Shame on me to complain. 
Today I woke up and was able to breathe.
 For that, that made today great, and as long as I can keep doing those two things, this reality...will turn into amazing moments that someday years from now I'll look back on and say, "I'm so thankful I went through all that to make me who I am today". 
This illness will not beat me...I am a fighter...and my story, is just starting.....

~God Bless 

Friday, November 13, 2015

21st Birthday Trip

For my birthday my present was another trip to Beverly Hills. My favorite place. It's such a calming place and I turn my phone on vibrate and just rejuvenate. Don't get me wrong, I do that on other trips, but Beverly Hills is one of my happy places. 
Some have asked why I spent my 21st birthday with my parents. Honestly, why wouldn't I want to spend my birthday with the two people who've done so much for me. Been there through everything. It's kind of a Thank You for everything they've done. 
Then to be able to have our two best friends with as well. I couldn't have imagined a better way to ring in's to many many more. 
Here's a link to some photos of my trip.

~God Bless 

Thursday, November 12, 2015

21 Days...Day 21

I can't believe today's my 21st birthday. It seems like just yesterday I started the countdown. There's so many things in life is like to share, and I probably will eventually share on here, but I just wanted to narrow down a few important things I've learned in the past 21 years. Now to say I'm 21 is a huge blessing in itself because as you know I was told I'd never live to be 16 lite lone 21. 
Today I feel blessed. 
My last and final lesson(for now); don't ever take your life for granted. It's as simple as that. I'm not a perfect person and never will be, but remember to cherish every moment. 

Remember, "life may be a climb, but the view sure is great." 

~God Bless 

21 Days...Day 20

1 day left...this is getting posted on the 12, but it's from the 11th...anyways; 
My lesson today...CF is the best thing that's ever happened to me. I've written about it before, but I'm very thankful God blessed me with CF. He knew I'd be strong enough to handle it, he knew I wouldn't believe in the odds and beat them. 
Having CF has made me a much stronger person, it's made me look at life in a different light, it's made me grow up faster.  I've gone through more in 21 years than some people do in a lifetime. I have many scars from the years...and I wear them proud. The biggest thing CF has done for me is its taught me to have a relationship with God, and accept him. Lastly, it's truly taught me to cherish my life, because tomorrow is never promised. I try not to take anything for granted. 
Having CF can be hard, don't get me wrong, but it makes me different, unique, and I can't imagine my life any differently, and frankly, I wouldn't choose to have it any other way. 

~God Bless 

Tuesday, November 10, 2015

21 Days...Day 17-19

It has been a couple days since I wrote. It wasn't my plan to skip, but a couple nights flew by and the more I thought about it, these next few life lessons kind of blend right in together. Let's get started. 
My life lessons for days 17-19 are: 
-your mother will become your best friend 
-your father is always right 
-yes it's true what they say; the older you get the more you realize your parents are always right(even when you don't want to admit it). 
Let me explain. 

My mom and I have a,ways been close, I mean let's face it she's been with me through EVERY hospital stay and NEVER once did she leave me alone, and to this day even at almost 21, she still comes to every appointment and stays with me. Per my request. She is the one person who knows exactly what's wrong when I'm sick. I don't even have to say it. She just knows, which is nice because if for some reason I'm having a hard time, she can communicate to doctors. 
Now I'm not saying we have a perfect relationship. It's actually far from it. We disagree A LOT, we get into big disagreements, we get on each other's nerves a lot, we have the same personality, which sometimes clashes, but at the end of the day she is one person I tell everything to. We disagree hard, and love hard. I call or text her first when I have bad news, or good news. I bounce ideas off of her. We may or may not share the same love for coffee. 
I've always heard the old saying; "a daughters just a girl who grows up to be your friend". Well she will always be my mom first and foremost. And yes, I do have other friends, but at the end of the day my mom is one of my best friends, and I can't imagine, and wouldn't want it any other way. 

I really have no explanation for it, but somehow my dads always right. He is the smartest man I know. I always bounce ideas, problems, and questions off of him, and I always ask him for advice, and I still can't figure it out but 99.99% of the time he is ALWAYS right. I'm so thankful for always having him around. I know I can always count on him. 

You know the saying that when your growing up your parents know nothing, and are never right. Well yes, I had those same thoughts, but the older I get the more i realize(and sometimes don't like to admit it) but in more and more life situations I've come to learn to listen when you ask for advice, and it's usually best to take their advice because most of the time...their right. 

I can't believe my birthdays 2 days away. I am so excited. I'm also very thankful for everything my parents have done and taught me the last 21 years and that's why I've dedicated this post to them. 

Till tomorrow 
~God Bless 

Saturday, November 7, 2015

21 Days...Day 16

Hospitals will become family. 

Being diagnosed with CF at 4 months old and spending almost my whole childhood in the hospital, early on I learned respect for everyone involved in my health. From doctors, to nurses, to phlebotomists, X-Ray technicians, social workers, child life name them I learned respect for them. It made me grow up faster. Made me really realize what life was/is and to not take it for granted. It taught me that family is important...and during sometimes I would see those wonderful people in the hospital more than my family, and they became my family. 
To me, family just isn't who you're related to by blood. It's those who are there for you, care for you when others are far away, or can't. 
Having CF I've learned to cherish my family, and cherish every moment with them, because years ago it wasn't always the case...and in those instances the hospital then became my family, and it's blended well, I have so many people who have/do care for me. I have one BIG family, that I love dearly. 
Thank you CF for my extra family, and the extra life lessons along the way. 

~God Bless 

21 Days...Day 15

Day 15 is a little late; but my life lesson today is: 

Make Memories

I know I talk about it on my blog a lot, but it's true. I think that's part of the reason I love to travel, which I have my parents to thank for that. My dads famous saying has always been, "you will never remember that item or toy you once wanted, but you will remember the trips we took, and you'll always have that memory". And you know what...he's 110% right(more on that in the next few days as well". Now I'm not saying take big extravagant trips, it may just be a little day trip, or a road trip, but if memories were priceless. 

3 of my favorite pictures from 2 favorite memories. 

~God Bless

Thursday, November 5, 2015

21 Days...Day 14

One week till I'm 21. In one week I will have beaten all the odds I was faced with, because I was told this moment wasn't even possible...which means now it's time to make new goals to hit and surpass. 

Onto my life lesson for and quotes will speak to your soul. 

I've always loved music, I could listen to it all day...there are just some songs that speak so loud it's like they were made for you. Spending a lot of time in the hospital, and not always wanting to watch tv, I've done lots of listening to music, and also reading. Which leads me to my love for quotes. I fully believe there is a quote for everything in life. For me, a good song or a good quote can lift me up from any situation. 

If you've followed my blog for sometime you probably know my love for Rascal Flatts. I love country music, and 80's rock(specifically Bon Jovi and his song It's My Life, kind of my motto song), and if there's any time I'm having a bad day, I can immedietly turn on any rascal flatts song and my mood will change instantly. My Wish is one of my favorite songs.  

With having CF, you learn that you sometimes make your life into a "fight". A fight against beating odds...a fight that will make you stronger...a fight for your life, and you will do ANYTHING to win that fight, just like Rachel Platten says in her song, "Fight Song".  

My point being, there is a song for every situation.

Lastly, I'll end with my favorite quote that comes from a George Strait song, a quote I use often, and I try to live my life the best I can to this quote: "life's not the breaths you take, but the moments that take your breath away". 

~God Bless 

Wednesday, November 4, 2015

21 Days...Day 13

As day 21 quickly approaches I'm going to leave this post short and sweet. Today's life lesson is very simple. 

Hang out with likeminded people and it'll become contagious. 

Case in point. If you hang out with someone with negative attitude long enough, you may just start developing a negative attitude. 
If you hang out with someone who is positive, you may just start to develop a positive attitude. 
It sounds hard, but it really is simple. One of my favorite quotes goes; "if you hang out with dogs, youll get fleas". 
*just a little food for thought*

Till tomorrow...
~God Bless  

Tuesday, November 3, 2015

21 Days...Day 12

This next life lesson I've learned has kind of taken me a while to be able to admit...and to be honest it's probably the one that I will forever have to keep working on. 

It's okay to be wrong...and admit it. 

Lets face it, nobody likes to be wrong, litelone admit it. So far I've learned , after many years of being stubborn, that it's better to just admit when you're wrong, because in the end it can save a lot of disagreements, and quite frankly a lot of time. 

Nobody is perfect, we will always be sinners, and we will always be wrong about something at some point or another, it's inevitable, but in the end when we're in a situation where we're wrong...just admit it. Trust me, it will suprisinly make your life much easier. 

~God Bless 

Monday, November 2, 2015

21 Days...Day 11

Today is Day 11. I want to put a little different spin on tonight's post. I want to talk about the biggest hero in my life...and why it's one of my biggest life lessons. 

What does a hero mean to you? To me a hero is someone who I look up to, teaches life lessons, and someone I want to follow in their footsteps. 

Who are my heroes? My number one hero is God. My parents are also my heroes. But my biggest hero is a man who has many names, he goes by dad to some, husband, uncle, to some he's called "pops", but to me he is best known as Grandpa. 

My dads father is my biggest hero. I've done posts about him before, this one is from his 90th birthday he is now 92. In the last 2 years he's had lots of health issues, and he is now in a nursing home. He is a selfless man. A man of his word. A man who when you talk to him, if you've never met him, you feel like you've known him forever. He has lived through the Great Depression, multiple world wars. Him and my grandma had 5 kids. They now have 12 grandkids and 1 great grand kid. They were farmers their whole life. My grandpa has told me that he became a farmer so he didn't go to war.
In his life he has been through it all. My grandpa has taught me so much. He has taught me what it's like to be selfless, to work hard. I've never met anyone whose worked as hard as him. When we were little he was the one who let us have late night snacks after helping with chores on the farm. 
He taught me to braid by showing me on bailor twine.
He is the kind of person I want to be. Will I ever be as great as him? Probably not. But I can sure try. 
Now, I do have great guidance to become like him. My dad is the apitamy of my grandpa. 
My goal in life is to make my grandpa proud. I truly believes he's proud of his whole family. 
The legacy he has created. I truly believe that he is proud of the life he's created. I can not imagine my life without him. He really is my best friend...and Bo's. I am proud to be his granddaughter and I will forever make it known. 
Now, why is this my life lesson? My parents have taught me from early on that family is forever, and one of the most important things in life, and I'm forever thankful for that. 

My hero.

~God Bless 

Sunday, November 1, 2015

21 Days...Day 10

I can't believe my birthday is next w keep...only 11 days left. 
As it gets closer, it has me really thinking of some important life lessons that I haven't mentioned yet.

The next lesson I've learned is: a good book will get you far in life.

I've always loved reading, I can knock out a good book in a day, thick or not. I love informational book, relationship books, & leadership books. I shared yesterday one of my favorite books, "Do YouThink I'm Beautiful".
 I've read so many books I love I can't choose just one, but ive learned that if you read the right books, it will take you very far in life...and you will always continue to learn. 

~God Bless 

21 Days...Day 9

Wow, I can't believe the countdown is almost all way done. 

The one lesson I learned a long time ago and I still try to abide by it today is: it's okay to be yourself. 

Everything about you is perfect in your own special way. Sometimes the hardest thing is learning to accept ourselves. The one thing I always remind myself when sometimes I start thinking about things to much, as a lot of us do; God created each of us special in our own way, let's not disappoint him and be someone were not. Be the best YOU! 
One of my favorite books I read often that reminds me that being myself is wonderful, is a book called Do You Think I'm Beautiful. I highly suggest you pick it up. 

~God Bless 

Friday, October 30, 2015

21 Days...Day 8

Today is day 8, this next life lesson is probably one of my favorites. 

Dare to Dream.

I see a lot of people that are afraid to dream, dream of the future, dream of the unforgettable. Growing up my parents always encouraged me to dream, they never told me I couldn't do something, instead guided me how to achieve it.
I know we all have dreams in us, deep down. Even when life gets tough sometimes those dreams become smaller and eventually fade. You have to remember to keep your dreams alive! It gives you something to look forward to. 
Having Cystic Fibrosis has taught me to always dream, and imagine the future. Even though there's a life expectancy on CF, that doesn't stop me from dreaming, in fact it makes me dream even more, it makes my dreams that much more real. Something to look forward to.
And I'm not afraid to say, I'm stubborn enough, and a little selfish that I will do whatever it takes so I can see all my dreams come true, and I hope you all do to. 
I think in the end, dreaming will make me live even longer...and that's just the plan I have. 

~God Bless

Thursday, October 29, 2015

21 Days...Day 7

Wow I can't believe how fast time is going. Already on day 8. My lesson today is one I'm reminded of everyday...

Everything's a learning experience. 

It's so true. Every situation in life is a learning experience. Sometimes we don't know why till later but it always makes us a better stronger person, but you must always be open minded as well, because if you aren't sometimes that one experience could've made a huge impact, and you might have missed out on a great lesson. 

Till tomorrow. 

~God Bless

Wednesday, October 28, 2015

21 Days...Day 6

Day 6...

This isn't so much a life lesson as it is a "fun analogy". 

A girl can never have to many handbags or shoes. 

I know this was a very short post, but sometimes it's ok to be "short and sweet". 
Until tomorrow, 
Remember "Don't let anyone dull your sparkle". 

~God Bless 

Tuesday, October 27, 2015

21 Days...Day 5

Day 5.

Take a risk.

Sometimes, I know for myself, I get so caught up in the moment, that I sometimes need to stop, focus, and look at reality. Especially when in a situation where I don't know what to do. 
When i need to make a decision; there's always two conclusions to a situation, usually an easier one, and sometimes one you're not sure how it'll turn out. I need to remember that you only get one life, take that risk. Jump in with both feet first, because sometimes taking the risk will be the best choice you ever made. 

How does Robert Frost say it: "two roads diverged in a wood, and I-I took the road less traveled, and that's made all the difference". 

~God Bless

Monday, October 26, 2015

21 Days...Day 4

Day 4. This topic is a major life lesson that I've learned. 

Live a life with no regrets. 

I know sometimes it is easier said than done, but I've learned, especially lately that you should always try to live your life with no regrets. When you're faced with situations, sometimes it's easier to take the easy way out, but in the end, will the easy way out be the best way? 

I'm going to keep this post short and sweet, but the one thought that is always in my mind is this; I heard someone say this before, and it is so true
"on your tombstone someday there's a birth date and a death date, and it's separated by a dash. what are you going to do with your dash?" 

In the end know ones going to remember the stuff you had. The material things dont matter. What matters is the impact you made on others during your dash...the memories, the difference you made in someone's life. 

Live a life with no regrets, spend it with those you love the most...because as I'm learning, it's true what everyone goes by WAY to fast. 

~God Bless 

Sunday, October 25, 2015

21 Days...Day 3

It's day 3 today. Today's post isn't going to be a lesson rather something I've learned the last 6 years. 

Life is better with a dog. 

Let me explain. 
If you follow me on any social media sights you've probably seen this already, but six years ago today one of the best things happened. 
My mom and I were on our way to visit with our wonderful friend, or so I thought. When we got to her house she said we have to go, so we hopped in her vehicle. It didn't seem to out of the ordinary. We drove for a little while, and got to this little town, and then my mom was on the phone talking to someone. I thought it was a little weird but hey, I was having fun just being with our friend. Next we pull up to this house. I was thinking we were picking something up, but as we got out of the car we go to the front door, and a lady answers and there is this tiny little Yorkie puppy at her feet, and it was at that moment when I was told this was MY new puppy. At first I didn't know what to think, and then the puppy and I went to the living room, sat on the couch, and bonded. My mom and our friend were visiting with the lady. I was still in shock. I think that lasted for a few days. 
Once I got this puppy home I was so excited. He was mine. I had wished for one for a really long time, and finally I had him. 
To say this was a surprise of a lifetime is an understatement. It was the surprise of a lifetime...and I honestly can not imagine my life without him. 

This is Beaureguard, also known as Bo, or Little Man: 

He is literally my best friend, and here's why; 
When I got him I though I just got a dog, but he is more than that, he has turned out to be like a child, but he's also been amazing with my Cystic Fibrosis. He can sense when I'm sick, when I'm worn out and need to rest, and he can also sense when things just aren't right, and he is always by my side when I do my treatments. The impact that that's had is so wonderful. 

I don't think anyone realized what an amazing impact he'd be in my life, maybe our wonderful friend because she has a Yorkie as well, but I don't know anything better to say to them than Thank You. 

Sometimes the biggest impacts of your are the things you least expect. 

~God Bless

Saturday, October 24, 2015

21 Days...Day 2

Today is day 2, and I'll be honest...I'm not sure if this is a life lesson, or just something in life I've learned you should never pass up. 

Never pass up traveling.

As most of you know I love to travel, I'm always up for an adventure. I've been blessed to have gone many places, in and out of the country. Seeing the beautiful creations...there's nothing like it. Some of my most favorite trips have been: 
-going to Canada
-going to Disney(of course) 
-Driving cross country to AZ(it's a fun drive, but I think next time I'll fly) 
-going on a Carribbean cruise on the Allure of the Seas(can not wait to go again)
-going to Beverly Hills for my 18th birthday with wonderful friends
-going back to Beverly Hills for my 20th birthday 
But hands down one of my favorite trips to date has to be my Make A Wish trip to Bora Bora. 

I say all this not to say "look at me", but to say; the trips, yes, have been amazing, hands down, but the most amazing things about all of them is the memories that were created with the people that mean the most to me in my life.

Memories that will last a lifetime, and for that I am forever thankful. 

In Bora Bora 
The island of Bora Bora 

In Arizona 

In St. Thomas one of the days on the cruise. 

~God Bless 

Friday, October 23, 2015

21 Days...Day 1

In 21 days it will be my 21st birthday. I've always been one to countdown my birthday and probably always will, but this birthday is a little more special. 
See my parents were told I'd probably never make it to graduate high school, nonetheless live to be 21. So I thought I'd do something a little different on my blog. For the next 21 days I will be posting 21 life lessons, or things that I've learned so far...some may be very random or just fun, but I'm doing this so I can look back one day and see what I've learned from then till now. I hope you all enjoy and keep an eye out for a new post a day. 

Day 1: Leave everything up to God 

I know this is very simple but it's so true. I've come to find my faith even more as I get older and even though sometimes I get mad and confused and don't understand why things are happening, I have learned that EVERYTHING happens for a reason, and only God knows that reason, and I've learned that he will never steer me wrong, and for that he's taught me to trust him, and I will always leave everything up to him. 

~God Bless 

Wednesday, October 14, 2015

Where Things Are At

I know it's been a short while since I've done an update. Let's jump right in.
First last night I headed over to MN to spend the night as I do before most of my appointments. It's easier than leaving the morning of. I'm 2 hours away which isn't to bad but getting some extra sleep and a full VEST treatment in before my appointment is worth it. 
My parents were in MN yesterday so I thought it would be fun to bring my dog with last night, because the hotel accepts dogs, and then this morning my dad would take the dog home while my mom and I headed to my appointment. Well it was a great success...the dog behaved very well and it was a lot of fun. 

Onto today. I had a 6 week follow up appointment with my specialist. Last time we were concerned over my PFT's being so low and that I've been just not myself. 

Well my PFT's were a tiny bit better. I lost almost 2 pounds. 
So my doctor is concerned even more so than last time. Last week I was sick with flu like symptoms for almost 3 days but it turns out I just don't tolerate inhaled Cayston, which is kind of a bummer since it took months to finally get approval. Oh well, I still have my old reliable, Tobi. 
Anyways; so my doctor is aware of how sensitive my system is to pretty much all pill form antibiotics. They mess with the lining of my stomach which is why I have to get hospitalized most of the time to get treated. But, we both remembered one medicine I have not been on in years, Doxicyclin. So I agreed to try it. I will be so happy if we've found one pill form antibiotic that works. I took my first dose tonight so with me luck. 
This is where things start getting tricky. I have to now go back again in 6 weeks because she is prettying concerned with how my numbers are, how my lungs are, and because I'm just not feeling myself and I'm just plain exhausted all.the.time. I also need to add that for the last 8 months I've had a constant runny/stuffy nose. Today she asked me an odd question, "have you ever got your sinus's checked out?". My mom and I thought and I have never seen an ENT before. I've never had polup issues before so I've never thought to see one. Ive heard of other CFers going before. My doctor now feels bad because she's thinking that maybe all this is cause of sinus issues. So in 6 weeks I will be visiting with the top ENT at my specialty clinic, who only works with CFers and(my favorite part) she doesn't like to operate unless absolute need be. To me that is important because IF this is all sinus issues, a surgery is something I don't want in my future. 
There was also some other things discussed at the appointment in regards to being so worn down, and being exhausted, so in the next few weeks I need to make some decisions, but no need to worry because whatever is decided will only be for the better. 
So there is a little update on how things are going, more exciting news though, only 28 days till my birthday. Yes I'm excited. I count down to my birthday every year, especially because if means another year outliving statistics. 
Also, it is officially the holiday season. If anyone knows me they know I could listen and watch Christmas music and movies year round, but i am so excited for the holidays. There is something about them that makes me so happy; whether it's spending time with the ones you love, or being a little more generous, and remembering all you're thankful for. 
 I truly do wish every day could be like Christmas. If even just for the feeling. 
I will probably have a few more blog posts before the end of the year, for sure next month, and after my next doctors appointment. 
I hope everyone is getting ready for the wonderful holiday season upon us. 
~God Bless 

Sunday, August 16, 2015

Be Aware

Last week i had a doctor's appointment with my CF specialist to discuss my hospitalization and to follow up. I did my PFT's and believe it or not my PFT's were the LOWEST they've ever been. My highest one was 81%. 
Next I met with my doctor, she was very happy to hear I'm feeling much better, but my numbers are a little alarming. So we are waiting on my cultures to come back, & my doctor suggested Predisone. this also leads me to my next topic...steroids. Specifically Predisone.
If anyone knows about steroids it can be a scary thought. The reactions. You're told you may get hungry. That's not to bad, but the other retractions you're not always told about, like mood swings, the fact you may become temporarily diabetic, sometimes your cholesterol will raise and physical affects can also come in the form. These are just a few things I wasn't necessarily informed about. 
I know getting steroids are sometimes scary because you don't always know what will happen, but done be afraid to ask questions, ask why you're being prescribed them. Get all the facts because sometimes the side affects, like becoming diabetic, which is a side affect I wasn't told about at first until I was on them once and my sugars hit 500+. Make sure YOU are comfortable with the decision because it is a big deal and life change and you have to make sure YOU are aware of the side affects. Do not be afraid to ask questions. 
Now why am I talking so much about Steroids? 
I got contacted a few days ago by someone who works with a company regarding "medical side affects, and asked if I'd like to write about a medicine that sometimes has hidden side affects and help raise Awarness. 
In conclusion in 8 weeks I'm going back to the doctor to decide if that is the right decision and from there we will put together a plan to get my PFT's back up because 81% does NOT cut it for me. I 
WILL do whatever it takes to get my lungs better. 

~God Bless 

Saturday, July 25, 2015

The Hardest Post By Far Part 2

When I left off with my previous blog post Part 1 I was beginning to talk about the start of a lot of changes, so let's continue, and I do apologize if when I left off I had people worried.
I went to the doctor, she said do you think it's time for a hospital stay, and I said probably, she said me to. She then told me how excited she was to see the new advances in the CF community for the medicine Orkambi. She said to me, "my goal is to keep you healthy enough so when a medicine comes out for your gene, you're healthy enough to have it". That made me so happy to hear. So I had an X-Ray done and there were multiple little spots in my lungs, that weren't there in May on my last X-Ray. Honestly, it looked a little worse than I had thought as well. So we went ahead and got a room, and by 1:00 p.m. I was down for my PICC line already. Before my PICC line they did blood work and my veins are pretty bad so they could hardly get a vein, so it was decided that since I was going to get a PICC to not even try a temporary IV. That is a good/bad thing. It's a good thing because it saves a poke, but its a bad thing because if there's an issue getting the PICC line in there's no other option. You're then stuck.
So down to interventional radiology I go to get a PICC line. Last time it surprisingly only took 30 minutes which is how long it's supposed to take. The few times before it took hours which is because I've had so many PICC lines that there's lots of scar tissue.
I get in the room, they strap me on that small table that feels like you're going to fall off, it's of course freezing so they cover me with warm blankets, then they warn me that the doctor is good but's always odd when they warn you first about a doctor. They try my right arm first. My worst arm, lots of numbing medicine which hurts, he tries and tries, and then he starts hitting my nerve which makes my hand start flying off the table. The pain literally shot through my whole hand. After multiple times of that happening I asked the nurse next to me if they could switch arms. There was some bleeding as well.
My right arm, the arm that they couldn't get an IV in, all those little holes are from numbing medicine. I believe we counted 11 needle marks in my right arm.
The doctor finally agreed to change arms. I am of course in tears at this point because it was just mentally exhausting. The nurse was amazing! He was wonderful. Then they switch arms and start trying on my left it takes many tries but FINALLY after 3+ hours they get it in. I had had enough. I asked if they could not put stitches in and just do the clamps and the assistant agreed.

I finally get put back in the wheel chair to go back to my room. They come get my mom out of the waiting room, and we go upstairs. I was so mentally exhausted, that I was on the verge of tears the whole way up to my room. When we got back to the room it was just my mom and I and she asked me how did it go with a very worried look on her fiace, and I just LOST it. Big time lost it. I felt like I had been through a bad rollercoaster ride. After all that I just wanted to see my dad, so my mom called and he said he was on his way. Somehow he made it in less than 40 minutes and we live almost 45 minutes away. I won't ask questions. At that moment I only wanted to be with him and my mom. I just wanted to feel "safe" if that makes sense. I was also left with semi-permanent nerve damage in my middle finger on my right hand from so many tries, and they said it should slowly come back in a few months. If not I have to go back in for that.
While laying on the table when trying to get the IV in, I could see the clock, and just watching time pass, there was lots of thinking time.
I'm usually a positive person, and try to always see good, but during the procedure I felt like I was no longer in control of my illness. I felt like it had officially started controlling me. Then they started talking to me about that one dreaded word...a Port. A port is the one thing I've never wanted to think about, because to me when it comes to that it means I'm not in control. To me that meant my illness is progressing. I know it sounds silly but those are the thoughts that went through my mind.
This hospital stay has made me look at my life WAY different. It's made me see reality a little more. It's made me realize that even though I'm a strong person, and always try to have a positive attitude, I'm not "super woman". I can't always be strong, It's ok. God knows how much I can handle, although sometimes I wonder why he thinks I can handle so much. I know that he's always watching over me and that everything will be ok.
While in the hospital I was asked/hinted many times if I was going to go back to Minnesota or if I was thinking of coming back to Wisconsin. That made me think...I finally have my own place, a good job...but I should be closer to my doctor, and I'm probably going to continue more care here in Wisconsin, and if my illness is starting to very slowly progress a little, maybe it's in my best interest to move back.
So after 7 days in the longest stay in a very long time, I went home to my parents house on home IV's. In the hospital I was on levaqin, zosyn, and vancomycin. When I came home I was only on Zosyn.

After much prayer, thought, and discussion with my parents & my boss, it was decided that I'd move back to Wisconsin. Where I work there's one not to far from my parents house so I'm going to be transferring there, and it's the same position I had in Minnesota, so I'm excited about that.
I told my parents moving back with them will be temporary till I can get settled in my new job and get a routine and find a place. 
I say all this to say, yes I am doing good. My health is good, my lungs feel good, I feel good about my decision, and I'm very excited to start this new journey. I'm also a little happy to be back in Wisconsin, it truly is home. 

IV free, below is how long the actual IV was. They said its one of the longest they've done. 

Did I think 2 months ago I'd be moving again? Absolutely not. Am I doing it for the right reason? Absolutely. My health is my number one priority. I will do anything to keep my health in check.
I've had lots of time to think since being off work. I'm going to do more myself to keep me healthier.
This hospital stay has kind of been like my aha moment. It taught me that I can't "plan" everything, and as much as I want and would like to, I can't control everything. That's just how life is. 
This hospital stay though has taught me a lot, and for that I'm very thankful, yes I had a hard time but it's made me stronger and I've learned and grown from it. It truly showed me that I can handle anything that comes my way and its showed me just how strong I really am. But at the end of the day I am doing very good in all aspects, and I truly know that God has bigger plans for me, and I know that he will not give me more than I can handle, and I just have to leave it all up to him. And from now on...that's exactly what I'm going to do because I know with him, everything will be ok.

~God Bless

Friday, July 17, 2015

The Hardest Post By Far Part 1

I've been trying to write this post for almost a month. It's probably one of the hardest posts to write because there's a lot to update on, so let's get started. 
Back in September of 2014 I got a new job at a great place. I got hired as a part time assistant manager. In January of this year I got a promotion to an Associate Manager. That was a 6 month training course. It was a position to where at the end I'd be able to be a store manager. In May I learned of a store opening in Minnesota. They had a position opened for a First Assistant Manager. Not Store Manager but still a great position. I was excited, so I inquired, interviewed, and got the job. This meant moving to Minnesota, which was exciting because I've always liked Minnesota and I'd be on my own. I had to be moved by June 1st because that's when my job started. 
After lots of looking I found my dream apartment. Is that even a thing? It was beautiful. 
Even Bo liked it. Isn't it cute?! 
Well in May we moved in. It was just Bo and I. Surprisingly we really enjoyed it. Bo was a little homesick, but other than that we were "on our own". It felt good to have that "independence" I guess you could say. 
Fast forward to the middle to end of June...I started to not feel right. Those with CF will know; there's that feeling you get and you just know...this isn't going to end well. 
Me of course being new to a job didn't want to take time off so I started "self medicating", doing more treatments, doing more exercise etc, by the second to last week in June I told my mom I have to go in. I started feeling like I do each time I go into the hospital. 
When you have CF you just know when it's time for a tune up. So I told my boss what was going on. She was good about it said keep her posted. On June 30th my mom and I went to my CF clinic in MN. 
*just a little side note, I cannot take any oral antibiotics, my stomach can't handle them, it's even listed as an allergy, so I can only do IV*
At the clinic my PFT's were 85%. The lowest they've ever been my whole life. I was seeing a doctor I'd never seen before due to my doctor being booked full. The doctor came in and said ok let's do IV levaquin, the IV medicine I always take. 
I asked for an X-ray but he said I had one at my last appointment in May so I don't need one, to which I replied; "I wasn't sick then",  but he said that didn't matter...then he said we'll do an outpatient PICC line and do home IV's. To which I replied again, "can I at least stay 24 hours because 1) they always have an issue getting a PICC line in because I've had so many and there's a lot of scar tissue, and 2) usually the second day I get nauseous and light headed. He said no because insurance won't cover it. I've never had an issue with my insurance before. I said let me think about it. He left and then a nurse came and said they don't think insurance will cover it. So my mom and I called and my insurance was shocked they would say that, so we asked if they'd do a pre-authorization and they said no. 
At this point I'd had enough and i had had my breaking point...I lost it. I was overwhelmed. Never have I had these kinds of issues. I couldn't believe it. It was like because I was an adult the level of care didn't matter, and what really got me upset and to my breaking point was they wouldn't listen to ME. The patient. My mom wasn't saying these things, I was and they weren't listening. 
Now I'm usually a very strong person, I dont let much get to me,  but as I get older things change. After my mini break down, and asking the nurse to leave, and talking to my mom I asked if she'd call my other doctor in Wisconsin where I was last time. She called told them what was going on and they said they had an appointment at 8:00 a.m. the next day. I took it, I asked them for a copy of my current PFT's, we kindly left, and I'm not sure if I'll return...
The next morning my mom and I left my apartment in Minnesota with my bag packed, we dropped the dog off with my dad on our way through and headed to my appointment...and that is where everything changed...not for the better....

~God Bless 

Part 2 coming soon.

Tuesday, May 19, 2015

The long wait

After being told I should start Cayston back in November or December I finally received it. It only took 6 months for insurance approval, and many calls to the pharmacy etc...but those with CF will understand the urgency to get it. Tonight I took my first dose and my prayers are for increased lung infection and less chest congestion. So when I'm done with 28 days of Cayston I hope for at least some improvement, but I am very thankful to have been able to receive it. 

Wish me luck!! 
~God Bless 

Wednesday, May 13, 2015

Appointment Update

Yesterday(Tuesday) I had my 3 annual month check up. I had a chest Cat scan first to check on a spot in my lungs that's been there for years but won't go away. 
Going into this appointment I was a little nervous because with all the humidity we've been having lately my lungs have not been happy. It's been a little more difficult to take a deep breathe etc...
So I had my appointment, my PFT's were 91%, good but not great, but the doctor isn't concerned. Me on the other hand, I'm not to thrilled with the numbers because this time last year they were 99%. It sort of shows that my CF is "progressing" so to speak, but my numbers are still good considering all odds. So my goal this summer is to exercise more and get my numbers up. 
The results from my CT scan weren't in yet but good news is when my doctor zoomed in and looked and the spot is actually not in my lungs, so she's thinking maybe it's some kind of scarring. Hopefully I hear the results in the next few days. 
That was my exciting day, my next appointment is in August, praying for better numbers. 
I will hopefully write soon, I may have a few fun new topics to post about soon, so stick around and keep checking back. :)
Hope everyone is having a wonderful week, and remember keep spreading Awarness for CF this month. 
~God Bless 

Saturday, May 2, 2015

Great Turnout

Today was our local CF walk. The walk in our area has been going on for over 20 years now. We had the biggest turnout that I can ever remember and we raised almost $17,000. For the size of our walk that is incredible. It made my heart so happy to see everyone who came out to walk and show their support to help find a cure. With all the money raised it will help add tomorrow's everyday, and will one day make CF stand for cure found. 
Here is a picture of all the people who walked today and raised money for a cure. 
I hope everyone has a great weekend and if you haven't had your CF walk yet, I hope there's great turnout. 

~God Bless 

Friday, May 1, 2015

Reflection, Hope, & Celebration

Today is the start of Cystic Fibrosis Awarness. It is the month where Facebook turns "purple", but it's also a time where I reflect on my life, and where I am, and where my future is going. I reflect on my goals and dreams for the future. It reminds me to not take each day for granted and live it to the fullest. 
Also, it reminds me of those who have lost their battle with CF. Those who fought a tough fight. 
May is a month of reflection, but also a month of hope, and celebration. It's a month of hope because as we raise Awarness we also raise money to help find a cure, so hopefully one day there will be a cure, and it's a month of celebration because even though people have lost their battle with CF, we can also celebrate the amazing life they lived while they were here.
My hope and prayer everyday is that one day CF will stand for Cure Found, and I don't have a doubt in my mind that that day will come...and soon. 
So this month as we celebrate CF Awarness if there's one final thought I can leave everyone with is this: as CFers we know that sometimes we don't know how strong we are until being strong is the only choice we have. But we also know how to celebrate life, and life each day to the fullest, because tomorrow's never promised. 

I hope everyone has great CF walks if you haven't had yours yet. My local one is tomorrow so I will update after that. 
~God Bless 

Sunday, April 26, 2015

Walk-A-Thon Time

It is almost May?! Can you believe it. If you've followed this blog at all as I've said before May is my favorite month because it is Cystic Fibrosis Awareness month. This coming Saturday(May 2nd) is our local CF Walk A Thon. I am very excited to go and see everyone again. This CF walk will be a little bittersweet because one of my great CF friends will not be there since he passed away last year. He was someone I looked up to because he was one of the first people my family and I met who had CF. 
Anyways I wanted to share the link to my personal fundraising site. I didn't do much for online fundraising this year, but did personal donations. I get asked each year for my fundraising link, so if someone is interested in donating here is the link: Personal Fundraising Site
I'm still getting personal donations from friends and family but I always forget to utilize my fundraising site. BUT, this Saturday rain or shine, my family and some friends will be doing the walk. We live in a smaller town so it is a pretty small walk but we raise as much as we can to help find a cure. 
Also, in honor of May being CF Awareness month, a couple years ago I was asked to be a "model" for my children's hospital and they took photos from me getting my PICC line, so they could show some photos to help those who were nervous and so they could show them what's going to happen and for teaching. Well I then created a YouTube video with the photos to help raise Awareness and I noticed the other day that somehow it was private again, so I changed the settings to public so hopefully everyone can see it now. Here is the link to the video: PICC Video  So turn up your speakers and enjoy. 
I will write soon, and I will end with one of my favorite quotes in honor of CF Awareness: "life's not the breaths you take, but the moments that take your breath away."
~God Bless

Thursday, April 16, 2015

It's been a While

Hey everyone, 
It's been quite a bit since I've blogged, and I had some time tonight so I decided to do a quick update. First, I hope everyone had a great Easter.
Isn't he cute?!
 I got to spend my Easter with family & especially my amazing grandpa. If you've followed my blog, Facebook, Instagram know I have a huge place for my grandpa. He's one of my most favorite people, someone I truly look up to. 
Don't worry, I'm sure I'll post more about him soon. 

As far as my health, other than my nonstop stuffed up nose things are going good :) I go back to the doctor May 12. I will be having a CT scan of my lungs to see if we can't figure out why there's one spot that won't go away, and to figure out what it is. 

Lastly, its almost my favorite month of the year...May. Cystic Fibrosis Awarness month. It's the time when Facebook turns purple, and we all snow our support for CF Awarness. It's also the time we remember those who lost their fight with CF, and we raise money and Awarness so less people lose their battle and can live long happy Healthy lives. On May 2nd we have our local CF Walk~A~Thon, as does many locations the rest of the summer. 

hope everyone is doing well, and I will update after our local CF walk if not sooner, and with that I'll end with one of my favorite quotes:
"don't let anyone dull your sparkle". 

~God Bless 

Wednesday, March 11, 2015

One of my greatest Memories

4 years ago today me, my mom, my dad, and my sister started out on one of the greatest adventures ever. My Make~A~Wish trip. We were going to Bora Bora. We were all super excited, especially since we weren't entirely sure how big the island was. Come to find out it was only 5 miles big :) if you want to see the original post I'll link it right here: Make~A~Wish Trip.

Let's just say it is a memory we will all have forever and I will always be forever thankful for the Make~A~Wish foundation. There are definitely children much sicker than I am who should be doing their wishes, and I'm just thankful that I was allowed to have one of my greatest Wishes come true. It is truly a memory I will remember forever, and for that I am thankful. It really goes to show that "Dreams DO come true".

Lastly, here is a link of pictures from my Make~A~Wish trip: Make~A~Wish Album
~God Bless

Friday, March 6, 2015

20 Years

Today March 7, 2015 marks my 20 year anniversary of being diagnosed with CF. I was four months old, and when I was diagnosed the life expectancy was not very good. In fact my parents were told I may not live to graduate high school. 
Having those kind of odds against you isn't very good, but I am very thankful that my parents did everything they could to make sure I got the best care. They took me to one of the top medical centers in Wisconsin to give me the best chance, and for that I am forever thankful. 
The past 20 years have been amazing, I went to school, proved statistics wrong & graduated high school, went on some pretty amazing trips, stayed relatively healthy, obtain a job, and the best part; the life expectancy keeps increasing. 
But I've never really been one to worry to much about statistics. Now don't get me wrong there's been many tough times, but in the end, those times just make us stronger.
To me the only thing that matters is living your life to the fullest each day, because tomorrow's never promised for anyone.  
I am so thankful the last 20 years, and yes I was born with CF but I always celebrate my CF anniversary because that is the actual day all of our lives changed forever.
I was also diagnosed on my uncles birthday; the same uncle who I was born on him and his wife's anniversary, so it's kind of a special day. 
Today's also a bittersweet day because it makes me think of all those who didn't get to celebrate days like these. 
So please keep them in your prayers today. I am so excited to see what the next 20 years hold, I can't wait for the next journey. 
I'm going to end with one of my favorite quotes: 
I hope everyone has a wonderful day, and remember to live your life to the fullest with the ones you love because tomorrow's never promised and remember: "don't let anyone dull your sparkle". 

~God Bless

Tuesday, February 10, 2015

A Good Day

Today was the day. The day for my big doctors appointment. 
First to start the day right, the lady got my IV for annual studies in on the first try which never happens! 

The initial blood draws...

Then to basically sum everything up short and sweet, God answered my prayers and my PFT's went from 85% last time, to 92%!!! There still not my best but they are MUCH better. Then I got the results of my annual studies and all my results are normal, and I'm not really even borderline diabetic, it's close but not quite, and lastly my chest X-Ray looked good, but there's a spot on my left lobe I've had for literally 3-4 years and my doctor wants to figure out what it actually is so at my next appointment I'm going to have a CT scan to see if we can't figure out what this weird spot is. 
But, all in all it was a GREAT appointment, the day was good, even though it was bad weather on our way home. After a good appointment nothing else really matters, and I really don't even have a bruise: 
Today just went to show that if I truly believe, and leave everything in God's hands...everything will turn out fine. I am truly so thankful for the outcome of today, and it just reassures me that in the end everything will turn out okay. 

~God Bless

Monday, February 9, 2015

As I Sit Here...

As I sit here tonight, in the light of the hotel room, watching Full House and drinking a coffee chiller, the night before my long doctor's appointment tomorrow, I'm reflecting on the last two months. 
Just two months ago I had thee worst PFT's of my life. Still considered good but not to MY standards. Tonight the thoughts in my mind keep replaying; have I done what I needed to improve them? Am I doing ALL that I know I am capable of? 
Before I put my head to the pillow tonight my final prayer will be for God to help me have improved lung function. I hope tomorrow my prayer is answered. 
I also have my annual studies tomorrow which included the 2 or 3 hour glucose tolerance test, X-Ray, PFT's and the doctor visit. I also pray that my border line diabetes has stayed borderline, and that all my functions and levels are good. 
As I get older each appointment becomes a little more difficult, but I know that with God's help everything will be ok and I WILL live a very long, healthy life.  
I will write later with an update. 

~God Bless