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

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

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 :)

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

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

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 :)

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

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

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

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