Saturday, November 13, 2010
Friday, August 27, 2010
Wednesday, August 25, 2010
Monday, July 5, 2010
Wednesday, June 30, 2010
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.
Sunday, June 20, 2010
Friday, June 18, 2010
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
Sunday, June 13, 2010
Saturday, June 12, 2010
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
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
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!
Tuesday, May 25, 2010
Thursday, April 29, 2010
Sunday, April 25, 2010
Wednesday, April 21, 2010
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.
Tuesday, April 20, 2010
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.
Monday, April 19, 2010
Sunday, April 18, 2010
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.
Friday, April 16, 2010
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.
Thursday, April 15, 2010
Wednesday, April 14, 2010
Tuesday, April 13, 2010
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.