Can you have a healthy CF diet?

Having Cystic Fibrosis, I am put on an insane diet. Not the normal diet that most of you know. My diet is, pack in as many calories a day, hoping I've hit 4,000 calorie; and to make sure it contains a lot of fat and protein. For those of you that don't know, Cystic Fibrosis also effects my pancreas. My pancreas does not produce enzymes, such as lipase, that breakdown fat and protein; resulting in no absorption of fat or protein ever. In order to try and fix this I take enzymes with practically everything I eat. It is extremely hard for me to gain weight and the second I gain one pound I usually jump for joy.

With being put on this enormous diet I tend to only focus on how much calories, fat and protein I can consume. Since I focus on this, the things I tend to eat probably aren't that healthy for me. I want to challenge all my CFer's to try and eat healthy getting in all the veggies, fiber, grains, (basically all the food groups), while still getting all the extra calories in the whole required for the CF diet. If any CFer's have some tips out there I would greatly appreciate them!

Where to begin?!?

I haven't posted in FOREVER it seems like!!! SO much has happened since I last blogged. A lot has changed so fast in my life.

Apparently I'm going to become a professional mover! About almost a month ago my originals plans of staying in Fresno got flipped. I ended up having to leave my job and I moved back home for a couple weeks while frantically figuring out my next move. Notice this move was not due to my health. So with a little good luck I was able to work it out with a couple of my old roomies in Sonoma since they hadn't found a house yet for the school year. We found a cute little four bedroom house, filled out applications, signed the lease, and moved in about two weeks later. I'm so lucky that Santa Rosa Junior College also hadn't had class registration for this fall semester yet, so I was able to sign up in time for classes too! I'm also changing my major to Dietetics and want to be a sports nutritionist or a clinical dietician. I was able to sign up for a couple nutrition classes and so far I love them.

My health through all this has done surprisingly well. It's been since April that I last went into the hospital. I think the new switch off of Tobi and Collistin must be doin the trip. I'm hoping I can stay out for over 6 months this time; the goal is to go until Christmas without having to go in. One big thing that I think has helped a lot is that, I definitely tried to not stress at all, which was a little hard, but paid off considering that I haven't gotten sick through all this re-arranging. That's one thing that I have realized about myself; since I know stressing does horrible things for my body, I have become a very care free person and learned to go with the flow on things.

I'll be trying to post way more often as long as I dont get too overwhelmed with school and work. Even though I've been all over these past few months, I'm extremely excited for this next part in my life, because I feel like it's where I'm suppose to be :)

A couple things here

I got my shirt in the mail from Piper! That's me in it above :) It's pretty sweet and I'm so excited to be a part of CF awareness. To know a little more about Piper, go and visit her blog, amatteroflifeandbreath.blogspot.com. Next on the list, work has been going fantastic! The long week of eight hour shifts, I survived (haha). My body made it through. I'm still feeling pretty good. I'm very sad though because my manager is putting in his two weeks. He is really awesome and invited me into the Buckle family in Fresno the first second. The other day when we were both on our lunch he started asking me about my Cystic Fibrosis more. He wondered what exactly it did and what it affected. I told him about all of the basics and how I have to do treatments everyday, about hospital trips, and iv's; all the good stuff right. He asked me "So does it keep getting worse?" When ever I answer this question, it's always interesting to see what the reaction of the person will be. I told him that yes it does, my life expectancy is about 37. His face and answer made me happy. He told me that how can that be; that he has never seen anyone so happy and smiling all the time. Knowing that people can tell that I have so much hope, joy, and faith in life makes me feel amazing that I can be inspiring to other people around me.

Next. I've been slacking on exercising, but i start ballet this this thursday and I can't wait to be picking back up with my passion.

Health. I finished my Tobi 28 day cycle and I've started my next 28 day cylce inhaled anti-biotic Colistin. I've heard lots of good stuff about this med and I did a week of it when I was in the hospital. This Colistin better kick the psudeo in my lungs butt so that way I can continue to stay feeling good. The only thing I hate about this, is the fact that I have to mix it myself every single time; drawing sterile water out and mixing it with the powder. This stuff better do it's trick because the nausea I get from it stinks, literally haha. I only get it for about the first minute or so, but i made the mistake the other day of eating right before I did it. Let's just say I won't be eating before I do my Colistin again, after my breakfast decided to give a surprise visit while taking it. Other than that I'm doing great, juts hoping to still get my weight up a little more.

On June 24th, a little boy named Conner, touched my heart. He passed away after battling Cystic Fibrosis and Prune Belly Syndrome for seven years. This breaks my heart, and makes me frustrated, because it's not fair. I couldn't even imagine how much strength and faith this little boy had. His mother blogged about his faith about heaven. She talked about how strong he was to endure so many weeks, years, of the hospital and iv's. It scares me. It just isn't fair that his time here on this earth he had to endure so much pain. Conner spread so much happiness through all of it though; he spread so much LOVE. At his memorial service everyone wore the color red; the color of LOVE. I did not get to ever meet him, but I will always remember Conner. Love, love, love, always, always, always.

a RED rose of LOVE for Conner

Vertex...So Close!

So, we all know that there is no cure for Cystic Fibrosis. I have always known this. No cure. It is the worst. Even though this is true, I, my family and friends, have always hoped that one day some one would find a cure; or something close. Since 2006, Vertex Industries has been working on two amazing drugs that seem to me, unbelievable. When I heard that Vertex was working on medications to target the actual cause of Cystic Fibrosis, my heart literally leapt with joy. I remember reading about VX-770 and VX-809 (the two drugs) for the first time earlier this year. Reading about how these drugs would target the defects in the mutations G551D and DeltaF508. Was I reading it right? Yes, I was! These two drugs deal with my two gene mutations!!! As i kept reading about them I started to cry. Tears of joy rolled down my face. I seriously couldn't believe it. I scrambled calling my momma and reading it to her over the phone. Basically, VX-770, which is in the last phases of clinical trials before getting approved by the FDA, helps the CFTR proteins open up and work properly. VX-809, in phase two trials, corrects the placement of the CFTR proteins, so then VX-770 makes them work. Can you even imagine how smart the people have to be to figure out these messed up cells and fix them must be?! Amazing. Cystic Fibrosis is so much more complicated then people describe it to be, which makes it very hard to even imagine that scientists are making such a breakthrough already. I have talked to people about the VX-770 study. Lung function has improved like crazy, like almost 15% higher. That is a big deal, beyond a big. I have read what someone who is in the clinical trial wrote and said they can't believe they feel HEALTHY. Now, a lot of us with CF will say we feel good, because to us coughing everyday is our normal good. To feel healthy I can't even imagine. This woman said that she has even backed off a little bit on doing nebulizers, and her lung function has still improved. Crazy! If I can stay healthy enough, I hope to become involved in these life changing clinical studies. These drugs could change my life. Yes, I know this is not a cure, but hey, I think its getting pretty damn close! Knowing that these target me specifically (my mutations) it could help me have so many more tomorrows. It gives me hope to continually want to try and get even better so that when these get approved, my lungs will again hit PFT numbers that I never thought I would see again. Please continue to believe, have hope, faith, and pray that these drugs will continue in their incredible movings toward getting approved by the FDA; because when they are, it will be THE best day of my life.

To help you understand what it looks like (not my x-rays):

These are "Normal" Lungs

(notice how clear they are)

These are lungs of Cystic Fibrosis

(the cloudiness is scarring)

Dear Daddy,

Thank you so much for everything you do for me, it means the world. I feel terrible that I can't drive home for father's day this year; my first father's day away and hopefully that last. You've always been supportive in my dreams, whether it be dancing my heart out, going to college, or more relevant to today making sure I keep my health in check. One memory that sticks out a lot is the dance "Butterfly Kisses" for Kids Unlimited several years ago. It was the father daughter dance that I got to do ballet in and the daddy's got to join us. I remember the practices at I think it was or one of the middles schools, the outfits with light pink, the picture we took in our outfits, and the dance on stage. Crazy how vivid I can remember it, and how fast time flies! I know I'm growing up, but I will always be your little princess. It was fun though. I know we've had our bumping of heads but this past year or so, our relationship has been blessed. I am thankful everyday that we have become so much closer and that our relationship is continually growing everyday. Now, you need to rest up and let that knee heal, so we can go dirt biking! I hate being away from family and holidays; hopefully I will be visiting home soon. Happy Father's Day Dad, I LOVE YOU!

~Sunshine

The Best 3hrs of Breathing

For three hours out of the day (at least), I breathe in what feels like the best thing ever. Waking up in the morning, my lungs crave my nebulizers; they crave the antibiotics. Duoneb, the bronchiodialator, that calms my lungs from spams; trying to help them relax and clear mucus with each breath I breathe in. Next comes the Hypersal. Man does Hypersal kick my butt, but the outcome of it later in the day is well worth it. Hypersal is hypertonic saline 7%; extreme salt water for interpretation. Breathing this in is amazing, as it makes the dry thick mucus in lungs hydrated like it should be, so I can actually get things moving and get it out. It irritates my lungs a little and helps me cough stuff out that I normally never would. While I do this, I strap on my vest. My best friend calls it the shake-n-bake. There is no "bake" part but the shake part is very true, as it shakes me and percussions my lungs to move everything around so mucus doesn't build up in one place causing a lung infection. After thirty minutes of that, I start my next neb of Pulmozyme. This helps loosen up mucus and cause it to become thinner; and this one only takes about ten minutes. Lastly, I start the antibiotic nebulizer. This one takes forever, but is my favorite; for it helps me the most. Tobi targets the bacteria psuedomonas that grows in my lungs that the mucus has trapped and made a nice convenient home for. Gee, I sound like a hazard. Tobi, I do as a 28 day cycle and on my 28 days off I do another antibiotic called Coliston. This thirty minutes of nebulizer fights for me what I can't fight. I finish it up with a quick shot of Advair and meds are complete. When I'm done with everything I feel good, I feel great. This is my everyday, every morning and every night routine. It really is a love hate relationship. I hate it because I HAVE to do it, but I love it because I can breathe.

My Job

Growing up is a little difficult. I have a job. I work for my body and Cystic Fibrosis. I've recently learned that CF is a full time job. The moment I wake up it starts by reaching over, grabbing a new nebulizer cup, getting the duoneb med, strapping on my vest, and plugging into my nebulizer; all so I can breahte. Every morning I do this for I'd say at least an hour to an hour and a half. I do that same thing at night. I also do two treatments in the middle of the day when I can fit them in. On top of all that I take many pills every morning, and even more with everything I eat. That's my first job. Of course I also need a job that makes some money.

I finally started working again, since I've moved. I commute about a half an hour away, to work in Fresno at Buckle. Working there so far has been great. All the people I work with are very welcoming and the manager is very nice. I have been put on the team as a part-time employee. I've only ever had a part time job and I have managed it quite well. Keep in mind that my part time jobs have always been at tops around 20 hours a week. When my manager asked me if i wanted some more "full time weeks" thrown into my schedule every now and then I said "Yes," thinking that more hours means more money. Well I got this next weeks schedule and he gave me a full-time week. I'll be working some 8 hour shift. A lot of you might be thinking, "Yea so, not that big of a deal, I work that much everyday." My problem is that I already have one job without Buckle; my CF. So, yes, I am nervous for this up-coming week. I'm resting right now since I have two days off, but I am also praying that my body works with me this next week and doesn't get exhausted, weak, or sick. So, please, pray for strength for me and for my body. Thank you!

~B