Saturday, November 13, 2010

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

Friday, August 27, 2010

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!

Wednesday, August 25, 2010

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 :)

Monday, July 5, 2010

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

Wednesday, June 30, 2010

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)

Sunday, June 20, 2010

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


Friday, June 18, 2010

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.

Wednesday, June 16, 2010

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

Sunday, June 13, 2010

Working Out :)

I'm starting my personal work out today! Exercising is so important for those with Cystic Fibrosis. Cardio workouts are key and keep our lungs in shape and healthy. When I was in high school I was always active everyday with cheerleading and dancing; participating in more than two hours per day. After high school I stopped doing a lot, and I think that has contributed to part of the drop in my lung function in the past couple years. So, to fix this, I plan on signing up for summer dance classes this week, and I can't wait. I have to get some exercise in to get my lung functions up; even if it's one percent at a time. My next doctor's appointment is in a little more than two weeks. I have two weeks to gain some weight and improve my health for this first "check point." Tonight I went on a bike ride for about ten minutes; but I'm going to have to drive my car around to see how far I went. I also did some stretches and a little living room dancing so I can start getting in shape for dance too. I can't wait to build some muscle; and actually have some to flex!!! :)

Saturday, June 12, 2010

Oh, How I WIsh...

I wish i could reassure you. It would be nice to know myself, what I'm going to feel like the next day. Not knowing is the worst part of it all. When someone says "Oh, you will get better," I automatically respond with something positive like "Oh I know, I will." Deep down inside when I am told something to that extent, it kills me to say a lie; because if I couldn't tell a lie I'd probably reply with "I HOPE so, I hope I will be able to get back to where I was before." I wish the consistency in my life wasn't a cough, a hack, or deep breath every once in a while. It kills me that I'm not able to reassure you, honestly, and tell you everything will be okay.

Short, Sweet but full of Love.


Love is not just a rose, a box of chocolates, an anniversary, or a holiday. Love is beyond that; beyond an emotion. It has the power to change anything. I choose to love with all of my heart. I agree with the saying "it is better to have loved and lost, then to have never loved at all." I believe love is strong and can touch people unexpectedly like they never thought it could; whether it be in a smile of a passing stranger, a hug from best friend, the opens arms of a family, a the butterflies from a kiss from your true love, or the unconditional love of God. Being surrounded my love my entire life, it was only natural that I would "pick it up" and pass it on as well. I am very blessed to have so many people in my life that love me; I truly am. It wasn't too long ago that I felt like I was selfish when it came to any form of love. Its a hard thing to explain.

It sucks to say, but CF effects my relationships too, especially through my teenage years. My CF was and is something that is always on my mind, and I believe (or use to believe) was always on my friends, boyfriend, or family members mind. Sometimes I didn't want to have to get so close to another person because I felt that getting close to them was being selfish. See, I told you, hard to explain. You're probably thinking, what? Having Cystic Fibrosis I know that my time here is will be shorter. I mainly went through this difficult subject with a significant other. I didn't want to get so close to someone get married and what not then pass away, cutting them short of something that two people have the joy of sharing throughout an entire "average" lifetime. I hope this is making sense. I felt like me creating relationships or loving someone was just me setting everyone up for eventual heartbreak. I felt like a person deserves to have a full lifetime of love from someone, and not just half. Part of this, was me being afraid; not wanting to have to loose all those who mean so much to me and who I love one day, and not getting to spend more time with them.

It was hard for me to get past this stupid idea that I had in my head, but then I realized that it was ridiculous. We are here to spread love. When I look back in my life right now, the ones that stick out are all of those filled with love, joy, and happiness. Why spend my time worrying, being afraid, and not making people happy? The truth is, is that no one really knows what is going to happen to them the next day. When I do leave (which hopefully won't be for a long time) I want to be remembered for love; and touch as many lives as I can for the better. So, with my knowledge now and how I've grown, even though I know what is "suppose" to kill me, will kill me sooner than those around me, I choose to love; and I hope you will too.

1 Corinthias 13:13 "And now these three remain: faith, hope, and love. But the greatest of these is love."

Saturday, June 5, 2010

My CF Awareness Video

video

Blessed with Strength

Today I've just been browsing CF sites and just relaxing, eating, and doing treatments. Strength has been on my mind.

Being strong is what I believe is an understatement, for those who have Cystic Fibrosis. Every person I know, read about and hear about; they have more strength than anyone I know. Strength: 1. the power or state of being strong; vigor 2. mental power, force, or vigor 3. moral power, firmness or courage. Our bodies are weak. Our bodies are not strong, but we have strength to push through it all. It seems to me that those with CF have more hope. It seems that God blessed us. Giving those who he knew would have the strength to handle this disease; to turn this breath taking disease and see it as a blessing. Someone once posted a question on a CF blog site asking "if you could go back and choose to have CF or not would you?" This is a question that is easier than you might think; and you might get a different answer than you would expect. I would not want to change a thing. True, life would be so much easier, simple, less stressful. If I didn't have CF though, I wouldn't be who I am today. It has helped shaped ME, but it is not all of me. I have been faced with challenges and I have overcome them. I know that there are more battles ahead and it makes me want to continue to be hopeful, have faith, be strong, have courage; know that God does not give us more than we can handle.

Many people pass away from Cystic Fibrosis at a young age. An age that seems unfair. In a way it is, but not entirely. Because I know what could happen, I take a different aspect on life. I know I appreciate every family member, friend, laughter, happy moment, sunny day, and breath so much more than anyone else. I love my life exactly the way it is and wouldn't change a thing because I know I am blessed.

Tuesday, June 1, 2010

Finally Moved!

So for a few months now ive been planning this next chapter in my life. I had been planning and trying to make plans to move so I could go to school and work in Fresno; as well as relax. Looking into different living options, I found and was blessed with the perfect set up! I have family in Chowchilla, so my Uncle David is letting me live in a house he owns. I'm now living with my awesome cousin, Colleen, on the almond ranch.

I just moved in yesterday and I am so excited! It's so nice and I cant wait for more fun to come. I had my meeting with the manager at where I'll be working today; so hopefully I get put on the schedule soon. Other than work and having fun my goal here is to relax but still get some exercise that way I can improve my health.

I had my one month check-up at Stanford last friday. I thought I was feeling good, though I did have a feeling I wasnt feeling better than when I got out because I had starting to cough a little that week. Unfortunately, my numbers went down 5% :( I was very disappointed in myself. On the upside of things I had gained weight, now weighing 105lbs!

This was just a little update...more too come and pics of my new place soon!

~B

Tuesday, May 25, 2010

So It's Been a While...

So let me catch y'all up on a few minor yet major details that have happened since I last posted.

Getting sick this last time was, lets say, life changing. In one month or so, my lung function dropped 15%. The last thursday I posted was the worse I had ever been. I was short of breath the moment I would get up to walk 10ft. I had been staying in bed all day. I would walk down my stairs to the kitchen to get food dreading to have to try and make my body to walk back up the stairs, because I knew by the time I got to the top, I would be hacking/coughing, racing to get to my bed and trying to catch any breath I could. Luckily my momma came down that day, otherwise that night would've been difficult to get through by my self. I couldn't breathe. If I had gotten worse my mom said she was going to take me to the emergency room.

The next morning, we drove to Stanford. I walked into my appointment by myself while my mom parked the car. This was my first time at the adult clinic side of Stanford. I was called to my room and the moment I walked in the lady was waiting for me to blow into the gun, that would spit back numbers that would cause me to come to realization. This was my worse PFT (pulmonary function test) ever; an FEV1 of 41%. Waiting for my mom I held back the tears that I ended up bursting out the second she walked into my room. I knew I was not going to have good numbers, but these were lower than I expected or wanted to accept.

All of this scared me. Things had to change, starting with being admitted into the hospital. This meant I couldn't finish out my semester at Sonoma State. It was one of the hardest decisions, because I didn't want to be a failure or fail at anything. From this point I also realized that my body is unpredictable and that I cant push it so much. Realizing this meant, my body can not handle the job of being a nurse. I hate that I can't become what I have a passion for and what I've wanted to be for such a long time. Not knowing what I was going to do next with my life made me feel confused. What would I do?

Everyone told me that I don't have to do anything; that having CF is a full time job itself. Which is true, having CF is a job and my life first before anything else. I still want to be something other than that though. I want to still be involved in the medical; I can't imagine not being in the medical field somehow. I needed to find something that wouldn't put stress on my body. So, I have decided to become a dietician and then minor in health management. It should be interesting...hopefully.

Since I've been out of the hospital, I've been resting back at home, in Redding. I needed this. I must say it has been a little on the boring side but oh well. Soon, in less than one week, I will be moving! I'm moving down south to Chowchilla. I'll be decreasing my load of school in the fall and only be going part-time in Fresno. I decided that its not worth the rush to get sick again. I'll work a little over the summer for some cash, but my focus this summer is to start some cardio and increase my numbers so I can make it through another semester.

To end this, thank you to everyone who has helped and been there for me the past month (Mom, Coleman, Dad, Jeff, Jesse, Kelsey, Olivia, Alyssa, Chelsa and everyone else.) You all mean the world to me and always will. You help me push through that bad times so I can have the best moments in the world with all of you! I love you all with every beat of my heart <3


Thursday, April 29, 2010

Long night...

So I haven't been feeling well, even though I have been on two oral antibiotics for over a week now. I hate feeling tired all the time, with no energy, not having a big appetite, coughing nonstop, and through the night. Last night was killer. I woke up around 3:30a.m. not being able to catch my breath. I had to do my inhaler, and it took a while for that to kick in. My body was sore from coughing so much in a short amount of time. I knew it was going to be hard to go back to sleep, and I was right. The moment I am able to relax I cough again, having to try and steady my breathing and relax all over again; its a vicious circle. So naturally I hop on my computer. Alyssa was on which was nice having someone else up to talk to (Alyssa is my friend, from my hometown, and also has CF). Watched some tv, then realized I should probably eat, since yesterday I hadn't really ate that much at all. It was now 5:30a.m. and I'm laying downstairs on the futon trying to sleep and became comfortable down there. I think I was finally able to fall asleep by 6a.m. Looooong night. I'm so tired still.

Since I haven't been feeling great whatsoever, I am headed to Stanford tomorrow. I will probably be getting a picc line placed and we will see if I will be staying in the hospital itself for a few days, or if they will let me do treatments back at home, in Redding.

My momma is coming down today though and I am so excited to see her!!! She always helps when I'm not feeling good. I love her!

~B

Sunday, April 25, 2010

Weekend Wrap-Up

Ok, so this will be a short one because i am studying and super tired from the drive back from Tahoe today.

The wedding was soooo much fun! The weather was perfect, a little on the chilly side, but still sunny. The reception was filled with lots of dancing! I was bummed because I think for the first time I was affected by the altitude. It made me more short of breathe, making me not be able to sing :( I'm sad I wasn't able to sing for my dad. Anyways everyone had fun and I will post a few pictures tomorrow. Goodnight!

~B

Wednesday, April 21, 2010

Sleep Now Work


Okay, so I've given my body a few days of rest and tomorrow I'm goin to start getting on this up trail to getting the lungs in better shape.

Anyways, this weekend is my dad's wedding, in Tahoe! I'm pretty excited because it gives me a chance to see family and friends! I am also superly nervous. I'm going to be singing at the reception. I'll be singing with the band. I feel bad for my roomies because all they will be hearing the next couple days is the same song over and over as I belt my lungs out to practice for saturday.

Singing is such a good cardio work out for my lungs; having to take all the deep breaths. I love it though!!! Wish me luck my voice stays here through all my coughing :)

Tuesday, April 20, 2010

Short and Sweet


My body craves sleep. It craves to eat, and consume what my body will allow. It craves medications, nebulizers, vest treatments, and antibiotics. It craves to once dance like it use to be able to, to show emotions through movements. It craves love, salt, laughter, to breathe, to be free. Free to be. This is what I want and will always want; a cure. No cure means, no we can't fix you. We can try to push it back but no it won't go away. I know eventually that CF will overcome my lungs and continues to try and make me weak. The idea of this, is harsh. It's my reality that I know of but I choose to fight against. When I think about the fact that this disease is going to shorten my time here, it does make me sad. Sad, because I don't want to miss anything. I've talked to other CFer's about this too. When most people in life don't want to get old, I do. I want to be able to get married, start a perfect family, have kids, watch them grow up, graduate. I want to be a grammy one day. I want to be able to have grandkids and love them, like my grammy does. I want the simple things out of life. It's not the fear of dying. It's the fear of dying and missing out on being an impact.

Whenever I think about this it makes me want to do everything. Makes me want to race around. Maybe that's why I tell myself to dream big, so I push myself.

~B

Monday, April 19, 2010

Time For An Anti-Biotic?

Deciding whether or not you are getting better, staying the same, or worse, is hard to do. I've been stepping up taking care of myself lately, hoping to stay healthy for my dad's wedding that is coming up this weekend. Unfortunately it's been a struggle. I'm not getting worse, but I'm not getting better either. My allergies hit my sinuses last week and then hello sinuses hitting my lungs! I had a sinus surgery a little over a year ago because my doctors and I decided that my sinuses were always leading to my lung infections. It's a lovely unending cycle for me. I'm probably the worst at taking care of my sinuses too. I hate doing the sinuses rinses, even though they are just as important as any other medication I take.

I called the doctor's earlier and had a long chat with my CF RN Coordinator, Mary. Told her I haven't been feeling great and asked a few other questions as well. You see, this last appointment of mine was the last with my amazing pediatrician (lil kids) Doctor Robinson. I will have a new doctor, staff, and building, next time I go in for a check up. So Dr. Robinson put on two oral anti-biotics; rifampin, for the MRSA cultured in my lungs, and levaquin, for the psuedomonas. Hopefully I will be feeling even better than before after this two weeks of hard core meds.

My day was filled with work, many phone calls, errands, and also work. Overall it was a pretty good day. I even talked to my manager about transferring to the Fresno Buckle when I move in a couple months, and she said she would talk to their manager to make sure it's okay. Yay! Everything right now is falling into place for me, and through it all I'm "growing up".

Psalms 16:9 "Therefore my heart is glad and my tongue rejoices; my body also will rest secure."

~B

Sunday, April 18, 2010

This Weekend and other thoughts.


This weekend was so much fun having Coleman here visiting me. He and his three friends came as well, so this weekend our house was full of rowdy boys! My roomies, boyfriend, and friends all had such a great time this weekend. Thursday night, we all went to a Mardi Gras themed dance, which turned into a long, crazy, yet exciting night. After this long night my body was tired. Then next day was just a day of relaxing and hanging out, then out again that night. Yesterday, I had work, while the boys went to Bodega Bay. That was a big bummer because I love the beach :( Oh well. Working kinda wore me out because after two late nights before that, my body was getting really tired. Luckily, my manager let me off early. I came home with a headache and then took a shower and tried taking a nap to get feeling a little better. It went away after some yummy pizza and some laughter with everyone. Later we popped popcorn on the stove, and turned it into a movie night.

So, with the fun weekend all summed up here comes the real part of my blog for today. Having Cystic Fibrosis, gets to me sometimes after I've had all my fun. Reality hits me after having a night of dancing, just hanging out with friends, or even having to cut the night a little bit early because I need to start my treatments. Waking up the next morning after two long nights, trying to ignore the fact that my body is just a little bit tired, got to me. I was tired. My body was tired, telling me i need rest and more inhaler/vest treatments. I hate this part of it all; having to stop myself and refocus on my CF and what really matters. The worst part is, this shouldn't have to be my main focus. I wish that it could just be school, friends, work, and having FUN. Knowing that I don't get to do everything everyone else does it what really gets to me the most.

So, yes, I did have a little breakdown this weekend about all this. I am lucky though because I still have people here for me when I do. Breaking down is one of the worst feelings, because you know inside that you've been fighting to keep feeling good and then you don't. Starting to cry, is almost like the feeling of giving up, because you don't want to admit yourself to CF. Yet somehow at the same time it is so relieving to get it all out. Such a strange mix that makes it frustrating and hard to understand why everything happens as it does. I hate being an emotional wreck. Makes my mind think way too much.

Anyways, thats all for today because I need to work on some homework. Here's a few pics from this weekend! And thank you Coleman for coming to visit me :)


Friday, April 16, 2010

Crackles

Today has been a super lazy day of relaxing, naps, and eating. This is what I need right now too. I can hear the crackles again, that's why. So in that sense, I'm goin to post my poem I wrote a couple of months ago about the crackles I get in my lungs.

Crackles:

sitting at night we lay and try to fall asleep

trying to ignore the breath of this disgusting disease


only those who are fighting

knows what its like to hear the inside dying


our fear of the first crackle that wont disappear

sends our mind whirling into thinking, why cant it be clear.


we sit and listen to the sound of fait

turing to the variety of medications that awaits


breathing in the moist meds that our lungs crave

we forget about our difficulties and the again become brave.


the first time you the faintest crackle

hoping with the next treatment it will fade away.


to waking up at midnight trying to breathe

from the crackles, that albuterol just cant put at ease


once its attack is over and its stopped its little tease

i sit and lay the trying to ignore the breath of a disease.


suddenly time flys by before you could ever catch it

and you wonder how you ever be able to get past this.


we know inside the daunting hospital is waiting

we figure hey we know eachother this well, why shouldnt we be dating


walking up to our room with our clothes & crackles

we realize we'll be bound to this bed with i.v.s as shackles


getting stronger and healthier as the days go by

the nurses and rp's comment that our smile is finally alive.


but the day the doctor comes in with a smile

means we get to pack up and our stay was all worthwhile.


defeating the crackles of these scarred lungs

give us the hope and again makes us feel young.


all us c.f.er's will always be in this fight together

accomplishing our goals and relating to eachother


though we cant sit face to face and talk

because of fear of cross infection.


we will always be there for one another

because with cf we have a special connection.



~B

Thursday, April 15, 2010

Taking it One Breath at a Time

So this morning waking up was a bit a surprise. I couldn't quite breathe, and it took a good ten minutes into my inhaler for me to even feel it working. I ask myself, "Am I getting sick? Again? Already?" No i realize that I kind of slacked off a tiny bit over my little spring break. I wish the spring break meant a break from everything; like including CF. So bummer. I got to step it back up and work my butt off to get back to feeling as my normal self. Hopefully I won't need to start an antibiotic. I hate it when I slack off with treatments. Thats the one thing I will always regret. So someone please tell me why I do it over and over again! I guess I just get tired of it every once and a while; wanting to be "normal."

Anyways after some extra inhalers and a walk around my campus the lungs are working better. Cardio? Cardio. Cardio! I need some more cardio and exercise in my life. I just find working out and stuff like that boring. I know its something i need to get my lungs healthier though. I am hoping to start the P90X workout DVDs soon. I also want to get back into dance this summer after the stress of school is over.

Talking about dancing, my boyfriend came to visit me today (and for the weekend), and we went to one of the fraternities dances. It was a lot of fun! It was some good cardio as well.

I'm so excited that Coleman came to visit me for the weekend. I love you Coleman.
Goodnight everyone!

~B

Wednesday, April 14, 2010

Focusing on Those I Love

I have been very blessed with an amazing support system. With everything that I have to do on a daily basis, to when i get really sick, I always have people that I can count on no matter what.

My family has been here with me through it all. I want to thank you all so much for everything you do for me. My momma, Heidi, is ALWAYS there for me, helping me, reminding me, and taking care of me when i need her most. From doin CPT on me when i was younger, to taking me to countless doctors appointments, staying with me when i have to go into the hospital, and supporting me through everything. I love you mom! My little brother, Jesse, keeps me wanting to do better everyday, so I can continue to be his big sister. I love my dad, Donnie, and so thankful that over that past year we have become so much closer; for it has meant to so much to me. Chelsa Aboud, my cousin, is my ispiration. She also has Cystic Fibrosis. I look at my cousin, and I see one of the strongest people I have ever met in my entire life! I look up to her and I always will, because throughout everything she has gone through she always is so positive and always keeps and smile on her face. I love you Chelsa so much!

Not only do I have my family, but I have had someone else that is special to me walk into my life. My boyfriend, Coleman, and I met this past September. From pretty much day one, I was open with him about my Cystic Fibrosis, and he has been so supportive and helpful. Since I've met him I have had a smile on my face everyday. I started getting sick in November. I was just trying to fight off the infection to hold off IV's and having to go into the hospital. Not going to lie, but I was nervous about how he would react to me having IV's and what not. I remember one night when i was a little upset and said that I probably will be going into the hospital next month. His response, "Dont talk like that because I know you are stronger than that." He had faith in me, and that meant so much. Him saying that made me change my perspective that I can change things and that I can fight it. I ended up not having to have IV's till late January. He went with me to my doctor's appointment, when I got my picc line IV in, and even drove back to Redding to stay with me for a few days (which is 5 hours from where he lives). He is amazing! I know that i can count on him, and i thank him for that so much. I love you Coleman.

My best friends. What i would do without them, i have no clue! Everyday, they are here for me. Olivia and Kelsey are truly more than best friends they are my soul sisters. Olivia and I met our freshman year of highschool and have been attached to the hip ever since. I appreciate her so much as she has seen my disease start to progress. She's visited me whenever I go into the hospital, and she definitely knows when I start to get sick and keeps me in check. Kelsey, you are the best positive support system I have. You help me everyday; help me with my treatments, remind me of things, have gone to my doctor's with me, visited me in the hospital. You will always be my Sonoma Mamma :) Olivia and Kelsey I love you both so much and I always will. You both have left more than footprints on my heart!

I know that all these people in my life have helped shaped part of who I am today. They push me when I need to push myself further and yet know when I just need some comfort. I love you all for everything you do!

~B

Tuesday, April 13, 2010

Loving life and its challenges with Cystic Fibrosis.

So this is my first blog and a little about me. I'll probably be rambling on, so bear with me :) Right now i am doing my nebulizer and vest. Life right now is a tiny bit up in the air and since i have so much on my mind blogging seems like a great way to relieve some stress. My number one priority is staying healthy. Cystic Fibrosis, for those of you who dont know what it is, is a lung disease. It causes mucus in the lungs, pancreas, and liver, to thicken. Cystic Fibrosis mainly effects my lungs, causing infections and decreasing my lung function. Yes, it sounds intimidating, and at times it is; knowing that it will cut my life short. I see it more as a blessing though. Living with this, I see life through different eyes. I cherish it more, want to live everyday, always want to have fun, laugh as much as I can, and always love unconditionally.
Right now, health wise I'm doing okay. The pft's are at 56%, and my weight is slowly rising (currently 105). But having the stress of school, work, and trying to make plans for my future has caused my lungs to feel a little blahhh right now. I want to be able to breathe more. I need to find motivation for exercising more and doing cardio to get my lung function back up to the 60's. Hopefully this blog thingy will help me track it all.
Anyways, life is good; just stressed.

~B