The Joys of having CF

The Joys of having CF

Wednesday, December 17, 2014

The Blackout

The blackout of a not so good appointment. 
Well to start, we left Monday night for my dr appointment Tuesday(we stay the night before) and we were getting some interesting weather. Anyways we get to the town where our hotel is and it is black, literally black. We go to the hotel and the worker meets us at the door. Apparently the whole power source for the town(a transformer) blew and the whole entire town was out of power. I must admit it was kinda cool, but they couldn't promise when the power would be back on , so we drive the rest of the way to MN and eventually found a hotel. 

Anyways this was just the start of a bigger blackout. 

Yesterday (12/16/14) I had a doctors appointment at my CF clinic. This was my first appointment at my CF clinic since my hospitalization. I was supposed to go last month but the doctor canceled my appointment. Anyways, I haven't been to happy with my doctor lately so I saw a different doctor this time. She was shocked at how not on top of things my dr was mad that know one informed me I was growing...pseudomonas(sp?) again. That explains a lot; probably why I got sick, why I haven't been feeling 100% lately and the biggest of all, my PFT's at my appointment yesterday were...85%!!!
I have never had that low of a PFT in MY.LIFE!
This time last year I was blowing 95-99%. Needless to say I'm not only mad, but also kinda upset to say the least. 
The doctor I saw today wasn't happy that even when I was telling my other doctor something was wrong they didn't do anything about it. 
So, the plan currently is ill be starting a new med, Cayston(as long as insurance approves). I have hope for this as I've heard great things about it. I also have a sample of the Tobi Podhaler to try as well. So with that we'll see how I am at my next appointment which is in 2 months, not the usual 3, and I'll also have annual studies that day. 

After taking in all this information and then seeing my PFT's it puts you in a "blackout". Things blur together, you try to forget some of it, you try to stay positive and reassuring yourself it WILL get better, but right now, in reality, it hits leaves you kind of feeling defeated. BUT, even though I'm currently in "blackout stage", Once I officially let everything sink in, I will then be in the "fix it" mode, meaning I will start my own research and make a plan of how I can increase my lung function. I WILL get my PFT's up, I WILL become 100% again. When there is a will, there is a way, and I will figure out how. 

So my first plan of attack, I will start researching different doctors, yes I do like this new doctor I saw, but I'm still not 100% comfortable with how things have gone. Getting second opinions are not a bad thing. There informative, and you have to trust your instincts. It is YOUR body, trust what it tells you, and that's exactly what I'm going to do. I WILL beat this thing, and before long "blackout" mode will be gone and I will enter "fix it" mode. 

I know everything will land up alright as long as I leave everything in Gods hands and keep believing in my faith. 

I hope everyone has a great Holiday Season; 
~God Bless 

Tuesday, December 9, 2014

Big Changes This Last Year

This past year there have been some big changes. I haven't been as good at updating the blog and for that I apologize. As I reflect on how this last year has gone I should probably give you all some backround information. 

Let's go way back to August 2013:
I had been out of the hospital for a year, done with high school for about a year and a half and I felt really good where I was at health wise, so I decided to try to get a job. I had always been apprehensive because I wasn't sure how my health would handle it. So if anyone knew me they knew that my favorite place ever was Starbucks. The closest one to me was 28 minutes away. Not to bad. I was there quite a bit so some people actually recognized me by face. I applied online, had an interview, and within 2 weeks I had myself a job. I was excited and nervous. But I absolutely adored and LOVED my job. Not many people can actually say they love their job, but I did. I was so proud of myself. This job had many great perks, one of them just happened to be great health insurance, which was a bonus because since I turned 18 I'd been in appeals for my insurance. They claim I'm not sick enough, even though one of my ends cost over $6,000 a month.
Anyways...I was so proud of myself. I had accomplished so much; great job, great co-workers, new friends etc...and I was only 18.

Now let's go to April 2014:
At this point Ive been at Starbucks for 8 months, and still loving it. I've made so many new friends, I couldn't wait to go to work and see the "regulars" everyday, and work in the drive thru(it was my ultimate favorite spot). Even though I worked the morning shift so I had to be to work by 4:30 a.m. to open by 5:00 a.m., which meant me getting up at 2:30 a.m. so I could get my Meds done and leave by 3:30 to get to work on time( I only lived 30 minutes but I liked to show up early).
So at this point I still of course loved my job but was thinking maybe there was something else I could do in my spare time(like I had a lot of that) so I got another very part time job(literally like 8 hours a week) in the same town as I worked and it was after I worked at Starbucks about 2 days a week. Not bad at all, it was a good experience, but just not my fit. 

Fast forward to August 2014:
I hit a huge milestone...this month marked 2 years! hospital free. I was so proud of myself. I was thinking this job thing was a good idea. I decided to put in my notice at my other job, just wasn't for me. My last day was scheduled to be September 8th, 2014. 

September 2014: 
The month that all the craziness started. I could start to feel something wasn't right. I had that feeling of something creeping in my lungs. I put it off for a while then called the doctor. They didn't think it was anything but prescribed 2 different Meds which totaled about 6 pills or more with each dose. Yeah, that wasn't good. The first day I took them(with food) I got so dizzy/lightheaded I got sent home from work. So I had had enough of that, did my research and found someone local who actually dealt with CF(that doesn't happen often). They prescribed a different med, and said see you in a week and if it doesn't work we'll discuss it them. Well it was a little before the time frame and I wasn't feeling better. Mind you, I looked ok, I was able to work, but on the inside my lungs just Hurt. It hurt to take deep breaths. I was able to hide it for quite a while but after a while you can only do so much. I had a follow up appt, and I warned some of my co-workers and boss what may happen. Well at the appointment the decision to be admitted was made. I made my first call to work, and they were great they said don't worry about it just get better. I got admitted, got IV's and started feeling better. I them came home on home IV's with a PICC line(you can see all my hospital updates in previous posts). 

I bet you're all thinking I got better and went back to work end of story. Nope, not even close. So right before all this sick business, and after I left my previous job I actually got another part time job. I promise you I am not a workaholic. This job was at a clothing retail store as a part-time assistant manager. I was excited and knew I'd be good at this job.
Well I had every single intention of going back to work, but at another doctor appointment the dr said to me I needed to consider leaving one job, probably Starbucks because of the early mornings and even though i made sure I got enough sleep my body was still getting run down. I was upset. I was going to have to give up a job I loved, and I didn't want to work another shift, because even though I'm not a morning person, I loved seeing the regulars in the morning. So after lots of talking and contemplating with my parents I decided to leave Starbucks. Writing up my letter of resignation was probably the hardest thing I've had to do. This job meant everything to me. I know it may sound silly but it did. I had a job that I could work with people which I love and yes not everyday was great, but that's what you get when you work with people :) but sometimes as a barista our smile or small talk was the only nice thing that customer may get that day and I strived to try to have each customer leave with a smile, it doesn't always work but that was my goal. It's what I strived to do. I tried to make the customer thee most important priority. 
The day I went in to give my boss my letter was probably the hardest thing I've ever done. When I gave it to my boss, who by the was was great, she always worked with me if I had a dr appt or anything. I couldn't have asked for a better first boss. But the day I gave my notice, I cried, she cried. It was hard!
In my heart I knew it was right, but I didn't want to face reality. I wasn't just leaving a job; I was leaving amazing co-workers, and friends, and since I gave my notice right after my IV was pulled I never got to say goodbye to the "regulars". To say I don't miss this job a small understatement. October 17, 2014 that chapter in my life, my first job, closed.

Fast forward to October & November 2014:
Alright so I quit Starbucks, I now have 1 job. I still have insurance battles, now I don't have insurance through Starbucks(well I have till March), and I have my secondary. Somehow by the grace of God I know everyone will fall into place. 
Now just because my lungs for the most part are better I am now left with side affects I've never had before. I for some silly reason can't drink coffee anymore(I sure hope this comes back eventually), and I'm left with no appetite, all my favorite foods I can't eat, something will look good in the store, and when I go to make it a few days later it makes my stomach flip flop. This is no fun and gets kinda pricey with all the groceries. I'm the last 2 1/2-3 months I've lost 10+ pounds because of it. I've been advised by the CF dietician to try a drink called Kiefer, it has lots of probiotics and their thinking maybe the IV Meds messed with my stomach in a big way and I need to try to replenish good things in my body. I'm praying someday my appetite comes back. We'll see if the drink works. Anyways on a more fun note, 
For my 20th birthday my parents took me back to my most favorite place ever, Beverly Hills, CA. You can read about that in a previous post, but it was awesome. 

This also enters my favorite time of the year, Thanksgiving and Christmas. For thanksgiving we went to my moms side of the family and my dads side. My grandpa came from the nursing home for Thanksgiving. I get so happy when i see him. I miss seeing him almost everyday, I cherish every holiday with him. I love him so much! 

Now this brings me up to December 2014-current:
Currently I'm still at my part time job, I had a doctors appointment a few weeks ago, and it wasn't that good as you probably read in my previous blog post, lung function test is the lowest I've ever had 85%.  Also on the 23rd I heard back from my doctor and my culture came back showing I am now not only growing psudamonas(sp?) but also staff, and stenotrophamonas(sp?). They want me to go back on an antibiotic that makes me sick. So we'll see how this turns out. I'm also now going to physical therapy. The doctor is hoping that maybe by doing different things it could help open my airways and loosen my lungs. I'm excited to see if this helps....

Then it was time for Christmas, my most favorite time of the year. We decorate the house:
We don't go crazy on presents but we each get a few, and some of us are more curious as to what's in the package than others :) 
Then on Christmas Eve I got Bo dressed up: 
He was less than amused, but so cute. 

This year for Christmas we went by family, and just like this year being full of firsts, this was also the first Christmas ever that my wonderful grandpa wasn't there. The nursing home called Christmas morning saying he was sick. To say we all missed him would be an understatement. Our minds I think were on him all day. We're all just praying he kicks whatever bug it is and that he'll be ok, he's strong I know he'll be okay. This just makes us all remember to not take things for granted and spend as much time with family whenever possible. 

Now I bet you're all wondering why I decided to write this post. Well I decided I wanted to inform you on my interesting journey this last year and tell you all the truth. That's what this blog is about, the fun times and the rough times and you know what; life isn't always a bed of roses. Sometimes it's REALLY hard especially when your health creeps up and takes you on an unexpected journey. Sometimes you may have to give things up that you love, but in the long run its the right thing to do. I want to look back on this year as we go into 2015 as a year I learned A Lot, a year my will and strength was tested a lot, a year where I didn't always have control of everything, a year where I truly put everything in God's hands. 
But you know what, I made it. He did not fail me. Everything turned out okay. I am happy and healthy. I am ready to fight off all these bugs in my lungs and have a great new year. I have a God who loves me. I have my faith, which I rely on a lot. I have a family who always has my back and is always there when I need them, and I know I never thank them enough. Yes sometimes we sweat the small stuff, and stress out over things, but at the end of the day nothing else really matters as long as you have your faith and family. 

I know this blog post was extremely long, and maybe it's jumbled, and if it is I apologize, but going into a brand new year I wanted to make sure I had all the facts. Maybe this is more for me in the future, but I also hope that maybe it will help someone along the way. 
I can not wait to see what this year brings. I hope 2015 is the year for big things and is an amazing year. 

I sure hope I made God proud with my decisions, and I hope I can continue to serve him in the way he enables me to, and someday hopefully a very long time from now when God decides it's my time to go, I hope he greets me at the gate and says" well done thy good and faithful servant". 

Happy new year everyone, God Bless.

Monday, November 17, 2014

20 years...Outliving Statistics

5 days ago I turned 20 years old. For a CFer that's a big milestone, especially because when I was diagnosed with CF the doctors said I probably wouldn't live to graduate high school. Proving statistics wrong is kind of a good feeling. Here's to another 20 wonderful healthy years, I cant wait to see how the next 20 years.
This year for my birthday my parents took me back to one of my favorite spots: Beverly Hills, CA. It was a lot of fun. Here's a link to the pictures on my facebook: Birthday Trip
Things have been doing good. I have another doctor's appointment on December 16th.  I have been feeling good for the most part, even though it is officially winter in Wisconsin.
I know it sounds crazy, but the only reason I like snow(not cold weather), is because it means my two favorite holidays are coming up: Thanksgiving & Christmas. Those are my two absolute favorite holidays...I can hardly wait to have Thanksgiving dinner, Christmas cards, decorating, the food.
It's going to be a great holiday season.
I will try to update before & after the holidays, I hope everyone has a great start to the holiday season.

~God Bless

Thursday, October 16, 2014

"How are you really doing?"

This was a question I was asked yesterday and quite honestly I didn't know how to answer it. I always say I'm doing fine, or i'm doing good, because usually I am but the more I thought of this question through out the day the more I realized that this was the first time ever, I was kind of stumped for an honest answer.

Let me explain: I always try to have a good attitude especially with CF, and life in general. Getting sick or going into the hospital doesn't bother me, because I know its something that needs to be done--basically it's like "routine maintenance", I know, a weird analogy, but it's true.
Yesterday I got my IV pulled since being on home IV's for the last 2 weeks, I also got my flu shot. I'm all set for winter.
But I realized something...I don't "bounce back" like I usually do. This hospital stay/sickness this time has been much harder, it's really taken much more out of me than usual. Usually by the time I finish IV's I feel 110%, this time i'm about a 97%, I'm almost there but not quite.
So what have I really learned the last 3 weeks:
-I need to not let myself get run down, tired/exhausted. Even though I think I'm fine-my body knows best.
-I need to work harder than usual to stay healthier...I think that honestly comes with age, the older you get sometimes the harder it is to bounce back
-I don't "bounce back" like I used to.
-I need to slow down...period.
So back to the main topic: "how am I really doing?", I'm doing okay. Now as good as I should, but Much better than I was.

This hospital stay/sickness has really been a learning experience for's really made me stop and look at my life, and realize I need to simplify my life as much as possible, I need to truly SLOW down, and I need to just enjoy life...and take it easy.

But in the end I know everything is in God's hands, and I WILL do everything in my power to prove statistics wrong, and I WILL live a very long, and wonderful life :)

~God Bless

Monday, September 29, 2014

Home-Day 1

Today was my first official day home. Honestly I didn't do much at all. I slept in(minus my 6 a.m.) IV, then ran some errands with my dad, and went and got coffee in honor of "National Coffee Day".
After errands we came home in time for me to start my IV's. I have Zosyn & Levaquin, so i'm basically hooked up from around 2-5ish. So in that time I decided to also do a VEST treatment. It's basically been a "catch up" day. It happens, especially when you've been gone for a week unexpectedly.

I am pretty proud of myself. After not being on IV's in over 2 years, I wasn't sure if i'd remember how to do some things, like take a shower 1 handed while trying to keep my arm covered enough to not get soaked. I wasn't sure if i'd remember how to inject myself with meds, or how to make sure I don't over due it(which is the hardest for me).

I am happy to report all that stuff has come back like second nature. I am a Pro at a 1 handed shower...and I am great at injecting myself with meds.
Some may think it's not normal to know how to do that & to be comfortable with that, but it goes with the territory. While I'm administering my meds into myself I cant help but think, no other person probably will ever go through this or understand what im doing, but in my mind I know that this is  my "life", this is the only way for me to get better faster, and its what I have to do to stay healthy; and no it's not "normal" but to a CFer...its our lifeline.

Well there's not to much else to report...things are so far going good at home. I have nothing pla

Sunday, September 28, 2014

Hospital-Day 6 & Home

I'm home!!! I'm very happy to be home with my BoBo. I'm on home IV's but that's the least of my worries. After I got discharged my first stop was the pet store. I had to buy my baby a present...and I ended up buying him a new harness, and collar. In my defense they were all on sale. Then we stopped at the grocery store for food. Then home. The home health nurse came showed us how to do meds(we know but it's protocol). 
It's great to be home...I'm currently on VEST I have an IV at 10:00 then bed. 
I was thinking about this yesterday and today...only a CFer can lose 5lbs(which is good usually when I'm sick I lose more) and Gain stomach muscles. Oh the life of having CF, but you know what: i love my life and I wouldn't trade it for anything!

Here's the table we set up for all my IV equipment: 

I also have 2 antibiotics; Zosyn which looks like this(my favorite IV type):
and levaquin(not pictured but I do it once a day and unfortunately it has to be hung on a pole).

Bo was also happy I was home: 
Well I will continue to update on my process at home. Thank you all again for the wonderful well wishes, prayers, texts, calls, and visits. It truly means a lot.

~God Bless

Saturday, September 27, 2014

Hospital-Day 4&5

Just a quick update yesterday I got my PICC line placed: 
My new accessory for the next 2 weeks or so. 
Discharge plan is for tomorrow late morning early afternoon. I'm excited to get home. I miss my baby, my dad has sent a few photos to me: 
I miss him, so when I get discharged the first spot is to the pet store to get him a treat, I know I'm a sucker for that face. 

Today is pretty chill as most Saturdays at a hospital are. I may have some visitors later. My one older sister came the other day and my other sister came yesterday and my dad has been stopping up. I also had some friends up. Its good to see everyone-the perk of staying local. 

Well I will write soon. It's almost time for a treatment and then a shower. 

~God bless 

Thursday, September 25, 2014

Hospital-Day 2

Day 2: not to much has changed. Had a few visitors today and yesterday. They ordered my PICC line placement. It was supposed to be put in tonight a around 5:30 but it got delayed until tomorrow around 11:00 a.m. This hospital is very busy with lots of stuff going around so there was an emergency that came in and was higher priority. Oh well, my temporary IV is still working good. So the plan is home IV's. Hopefully discharged Saturday or Sunday. Monday at latest. I will keep everyone posted with updates. Thank you all for the thoughts & prayers. They truly mean a lot. 

~God Bless

Wednesday, September 24, 2014

Hospital-Day 1

Day 1: I was admitted to the hospital. After going home from work again it was time to figure something out. So I didn't make it to my Thursday appt. 
I am now inpatient, at a hospital I've never been which is very close to my house and they don't know to much about CF but there is a pulmonologist here who has a 60 year old CF patient so I feel pretty confident. I'm on my strict VEST regiment, I am on 3 IV meds,(levaquin, zosyn, and another med that starts with a V, I can't really remember) but it seems to be working so far. I can already feel stuff moving around. Tomorrow I'm possibly getting a PICC line, waiting for results from culture then we'll discuss going home on IV's hoping to be home by the weekend. 
I'll keep u posted. Please also keep the CF community in your thoughts and prayers. Quite a few CFers sadly lost their battle yesterday. Very sad. Keep their families in your prayers. 

All my wonderful meds :) 

Will write soon. 
~God Bless

Tuesday, September 16, 2014

10 days...

Where has the time gone...the last time I blogged was May?!?! I guess time has gotten away from me. There's quite a bit to catch you all up on, so here goes.  Since May not to much has happened. I was staying busy this summer, and also staying "cool" since we had kind of a humid summer. I stayed in AC most of the time :) Then August came upon us...
In August I had my annual 3 month check up, and if you remember my post back in May(See Here), you know things weren't going great but they certainly weren't bad. Well fast forward to PFT's are currently down 9% in lung function. Which to some may not sound bad but in a CFer's life its not that great. I've gone from being a consistent 96-98% lung function down to 91%, yeah, you could say I'm not happy. Yes I understand warmer/humid weather does affect PFT's and will make them lower, but that is a significant drop. So my doctor still doesn't think anything is wrong, he says lets wait it out. Well I am not concerned even more so because I see my numbers slipping, and I know someone with lower PFT's than mine will probably say: "you're functions are good", but am not proud of my numbers. Now about a week ago my lungs started to feel even more tight than they have the last few months(and I have expressed my doctor with my concern and he says lets wait it off a little). So they put me on 3 cipro pills and 2 bactrum pills twice a day. That's a total of 5 antibiotics even before all my others. Well I took my night time dose, then morning, and I DID take with food. Well all those pills caused some kind of reaction with my stomach, I became hot/cold, dizzy/lightheaded, upset stomach. I.Was.Done! I literally crawled in bed and slept for 30 hours. finally after all that I started feeling somewhat better, and all I had eaten was chicken soup. then they decided to call in Levaquin(my Miracle drug). it does the trick ever.time. well at this point and am not willing to try any.more pills.
So I decide to do my research and get a second opinion. I found someone local who actually does deal with CF patients(that's a first for the area I live in), so I had an appointment today. I gave her my last PFT's. she wasn't to happy with them. She totally understood my frustration, and we discussed a game plan. I have 10 days...10 days on 750mg of Levaquin, 1 pill once a day for 10 days. If I don't feel any better by 10 days when I go back to see her, we will be doing a chest X-Ray and a admission....if anyone has remembered I haven't been in the hospital in over 2 years...for some reason oral levaquin doesn't always work, but IV always does the trick, we aren't sure why, she said it could be because CFers have a harder time breaking things down in their system and with IV it's more direct, and with that it's now down to 10 days...
Soooo that's where things are at lately. Kind of a long update. I apologize. I will try to not take so long with updating next time. I will try to post and let you all know the decision after my appointment next week.

I hope everyone's doing well and enjoying this Fall like weather we've been having.

~God Bless

Monday, May 5, 2014

"You're one of those Patients"

That's what I was told by my doctor today. Today started out normal, I got up, did my meds, my dad rode along with me and we headed to my dr appt. I felt great. I've been feeling the best I ever have been. I got to the doctor, checked in, and that's when the mood of the day changed-and not for the better. I went upstairs for my PFT's(pulminary function test), they checked my weight. I gained a little, which is good. Then came PFT's. I usually do a total of 5 tests(5 blows). My first one is usually lower since I just started,  like around 87% and then my best is usually number 4. Works like clock work every time. Well today I had a guy who only let me do it 3 times. No more. So my first blow was 87%, typical, next one was 92%, typical and my third one was 94%, and I was told-"you're done". I was not happy. I just started getting my numbers good. 94% was my old usual like 2 years ago. The last 2 years I've been averaging 98%-99% and 3 months ago I was at 100%. So needless to say my dr is now concerned. 
He asked if I'm doing anything different and when I said no and that I feel the best I ever have it alarmed him a little. 
I'm also one of those people that can feel wonderful and have an infection and pneumonia and not even know it, that's when he said "so you're one of those patients" with a smile of course. This is only my third appt with him. I love my dr because he doesn't believe in doing unnecessary antibiotics or X-rays unless needed, so we talked and agreed that in 3 weeks I'm going to repeat PFT's, and if their up then we're not going to worry. BUT if their any lower or the same then we're going to dig deeper to make sure nothing's wrong. I appreciate though that he doesn't want to give me antibiotics for precaution because like he said, if he gives me to many now someday when I may really need them I could become resistant. So that's how my day went, but I feel really confident that I'll raise my numbers in 3 weeks. I don't want to break my good stretch of being healthy, because this upcoming August will make 2 years since I've been in the hospital. I'm so excited.
Also I'm part of a small research study with my old doctor so every time I go to the dr for the next 2 years I have to get blood drawn(which I enjoy), crazy I know. Well today there were practice lab drawers. Now I always have a rule, 3 pokes and you're done because my veins are so bad. So they nicely asked first and of course I said they could practice, they have to learn sometime, the lady tried once, and missed, then the tech tried and missed, and the tech finally did it a third time and got it. Now I have a bruise on my right arm, but blood got drawn, not really painful so all is good. 
I'm going to stop rambling now but just wanted to give you all an update. Will write soon. 

~God Bless

Sunday, May 4, 2014

In honor of CF Awareness Month

In honor of CF awareness month I thought I'd share a few photos of things us CFers sometimes go through. 

Call me crazy but somehow I enjoy getting IV's, and i enjoy having PICC lines. Thankfully I've been IV free for 21 months. I can't believe it. It's been so long since I've been this healthy. I'm so thankful. 
Also here's the link to the video I made of me getting a PICC line 
Will write soon. Tomorrow I have a doctor appt. 

~God Bless 

CF Walk-A-Thon

On Saturday, May 5th, we had are local CF Walk. Our local walk, which is fairly small, raised just over $11,000 not counting online donations. There were lots of new faces this year. Lots of little kids. There was around 100 people. It was a great turn out and it was sunny instead of the predicted rain for the day. 
It was a wonderful day of people coming together to help find a CURE for CF :) 

"Helping to add tomorrow's everyday and to make CF stand for Cure Found".

~God Bless

Visit with Grandpa

So, some of you may or may not know but my wonderful grandpa has been in the nursing home now since last summer. He had a minor stroke, and then through a chain of events was put in the nursing home. He is at our local nursing home in town, and there's some of his friends he grew up with there, but it's not the same as when he was home. See my grandparents live just a few hundred yards away. I can see there house from our house window, it's walking distance. 
I would usually see my grandpa multiple times a week, but now with him being in the nursing home which is only 10 minutes away it's harder to see him. Time gets away and before I know it, it's been weeks since I've seen him, and I don't like that at all. He's 90 years old and will be 91 in a few weeks. I am very close with my grandpa, and he is also very close with my dog, Bo. 
So today I went to see him. The sun was shining, it was just the perfect day. He was so happy to see us, as was i to see him. I love him so much, and I don't know what I'd do without him. 

My grandpa and I.

~God Bless 

Tuesday, April 29, 2014

4 days

I just wanted to do a quick post about what's happening in 4 days. In 4 days it's CF Walk-A-Thon time! I get excited every year when it gets closer to May, because May is CF Awarness month. 
This year I really dropped the ball on fundraising for my walk. I'm still getting personal donations from friends and family but I forgot to utilize my fundraising site. BUT, this Saturday rain or shine, my family and some friends will be doing the walk. I 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 Awarness 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 Awarness and I noticed the other day somehow it was private, so i changed the settings to public so hopefully everyone can see it now. Here is the link to the video:
I really hope it helps raise some Awarness for others. So turn up your speakers and enjoy. 
Lastly, I have had some people ask for my fundraising link, feel free to message me, or find it on my Facebook page. 
I hope everyone's doing well and staying healthy. 
Also, I go to the doctor on Monday for CF clinic! Fingers crossed for great PFT's. 

~God Bless 

Thursday, April 17, 2014

Happy Spring

I hope everyone's enjoying Spring, or if your like those of us that keep getting snow, waiting for Spring :) 
I've been a little MIA, we recently went on a Caribbean cruise, so I was gone for 8 days, and we visited with my grandma in FL for 2 days as well. 
The trip was great. This was our first cruise. It was a little long, but id definitely do it again. We went on Royal Caribbean's ship the Allure of the Seas(the biggest ship currently in the water). Lots of fun. We started off from Ft.Lauderdale and then went to the Bahamas, St. Thomas, and St. Maarten. 
St. Thomas was my favorite spot. 
I thought id share a few pictures quick,

Our boat

St. Thomas-my favorite

St. Maarten

I'll try to post more pictures or a link to the pictures I put on Facebook. All in all it was a great trip and lots of fun. 

I did miss my dog but he was in good hands, & my health stayed great through the trip. I brought all my meds and VEST with me on the boat. 

Hope everyone had a great day. 
~God Bless 


Friday, February 21, 2014

Wisconsin Winter

I love where i live. I live in Wisconsin and it's so beautiful. You get to see all 4 seasons, my favorites are definitely Spring and Fall. Something about drury, sloppy, rainy, muddy days i just love, I'm not sure why. I like summer but with my CF I don't like it too humid, and yes believe it or not I do like winter. The snow is so pretty, but this winter is testing my patience. I believe one site said out of 30+ days all of them have been in the negative. But the -30* days made me consider my liking for winter. I'm not one to complain because the cold air does actually help and make my lungs feel good but I'm ready for warmer weather. Just today we got more snow. 
This is the drift in front of our garage: 
Above my knees. 
And this was after some tracks: 
So deep. 
But it does give me an excuse to stay in sweats all day. 
Even Bo isn't impressed that the snow is taller than him: 
BUT: one thing I know for sure, the snow can't stay forever :) 
Hope everyone has a wonderful day! 
~God Bless 

Thursday, February 20, 2014

2 Months

Has it really been 2 months since I blogged last. Yikes. I'm doing great. In January I had my annual studies at the dr, thankfully all my levels are normal. Then I had PFT's a few weeks later and they were...100%!!! I have never in my life seen my number. I'm so happy. 
Here is a picture of my PFT chart: 

Things have been very good, despite the very long and cold Wisconsin winter. Spring will come eventually I'm sure :) 

Bo Is doing good. He's over the cold weather and snow. He wants to take walks again, and quite frankly I don't blame him but I do love sometimes just sitting in comfy clothes and having Bo on my lap, like he is as I type this,and doing nothing. 

I don't know to much else. I hope everyone else is doing well. I'll write soon! 
~God Bless 

Love Bo and I :)