You will always be in my Heart

So, I don't even know where to start, mostly because I don't know where I left off last time. So much has changed since last time i wrote. I have moved back to my home town Redding. I started living at my momma's house, moved out and got my own place, got sick, got well, and the next month got sick again. Found out I had to move back in with my momma because the house I was living in had a mold issue. In July I had a feeding tube placed, which hurt like hell! Im finally starting to gain weight since I've been sick so many times since I have had it. The plus side is that I have not lost any weight at all. Even with all this moving around and having many changes going on in my life there has only been one thing on my mind everyday. My best friend, Alyssa Crank, passed away July 17 because of Cystic Fibrosis. Even though I knew that it was coming, I never thought that she would pass away that soon. Part of my heart was torn that day. This is when I hate all those little cliches in life, like, life isn't fair. Life truly is not fair, and it does not make make any sense. She was the biggest fighter I knew, the strongest person. Alyssa, in her tiny little body, had the biggest heart, best sense of humor, and the strongest will to live. It really sank in at her memorial service. She was always there for me no matter what, she was a true friend. I can't even start to explain how much I miss her. It's very hard not to be selfish and want to see her again when I know she is laughing without coughing, dancing without getting short of breath, and celebrating the amazing breaths that she can now take in heaven. I still can't believe she is gone though. It scares me so much because she passed away from something that I have. It's made my disease more real to me than it ever has been before. Loosing has made me try to fight this battle even harder. I can't and I will never give up because she never did either. Words really can't explain how much it hurts to loose you best friend. I long for the day where I get to see you again and we can both truly breath forever. Alyssa Marie Crank you are forever loved and you will always be in my heart. I love you and miss you.

Finding your Motivation

Trying takes every fiber of body. For some reason to keep trying is the most difficult when times aren’t the hardest. I get exhausted so easy. You think that your LIFE and the number of days you have depending on how well you take care of yourself would be enough of an influence. I guess its not so much as its hard for me to keep on trying but for me to stayed focused on the future 100% of the time. I have to stay focused and think about my future every single day, the moment I wake up, the second I get ready for bed, and many times in between. I want to be able to live in the present, but for me to have more time I can’t. Inhalers all the time wear me out. I have to always remember. Remember is the hardest when I’m feeling good; like right now. I get so excited that I’m doing so well that I forget that I have to keep at pushing more so I stay like that. This time it has been a little bit easier because I haven’t just been focusing on life in general, but another life. To clear the air right away, no, I am not pregnant nor plan on getting pregnant anytime soon! BUT I do eventually want to have a kid. Talking to the doctors this last time helped me become more positive and confident in myself that I will one day be able to have kids; as long as I keep trying to get my lung function up and it stay up. After being off of I.V. antibiotics for about a month now my lung function is up to 60%! Now for me, that’s good, since I haven’t had numbers that high in a while. I want to get them higher though. My goal is to get a steady baseline of 65%. Having this new motivation (even though I don’t have anything planned for the near future) has helped me see life in a new, positive way. I encouraged everyone of you CFer’s to seek out that motivation and keep fighting whether its good or bad times; cuz remember you gotta keep on fighting today to get a better tomorrow. Sending love to all of my CFer’s out there, love you all!

B

rushing through life a bit

I know I haven't posted in such a long time, so here it goes. Lately, everything in my life has been going perfect. I've been able to juggle both work and school, and still not get sick. Everything with my family has been great and things with the boyfriend couldn't be better. Even though things are going so good, I can't help the feeling but to want to more. I'm feeling great and I have been out of the hospital for I think 6 months now. It makes me so happy. Feeling like this makes me want it not to end. This makes me want more while I'm still feeling good because I know the second my health goes down hill my life freezes. When I feel this great I want to do everything and go everywhere.; which is the bad part. I feel good so I go out and have fun. I think I can handle it but eventually I know I will start spiraling down. It's so hard to to have to keep yourself from having fun and living life so that way you can live more life (I hope that just made sense.) I just want to all now; so that way time doesn't run out before I achieve it.

~B

To all my CFers...

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