The Joys of having CF

The Joys of having CF

Monday, April 25, 2011

Lungs tell time...

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

**these are pretty healthy lungs**

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

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

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

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

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

Have a great day ~God Bless

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

Sunday, April 24, 2011

Happy Easter and...Photo Shoot???

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

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

Do you notice the sort-of matching clothes :)

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

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

Monday, April 18, 2011

We Need Your Help

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

Wednesday, April 13, 2011

i want it back

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

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

Monday, April 11, 2011

It's that time again...

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