What do you guys do with all of your old nebs? I get a new one every single time I’m shipped Cayston, and right now they’re just collecting on top of my dresser.
Can you recycle it? Do you just throw them in the trash?
I don’t really like the “cyster” and “fibro” labels that CFers use to describe females or males in the community.
For one, I can only think of cyst when I see “cyster” and those gross me out.
Secondly, I don’t know why, but I cringe when I hear or see those words. It’s kind of the same feeling that I get when adults use outdated internet acronyms thinking that they are being relevant but they’re really just embarrassing themselves by showing how aged and out of touch they really are.
It’s not that I don’t love all of you, I just don’t want to call you those names. I hope you guys understand. <3
I’ve heard that phrase from many people in my lifetime, but with the reality of Cystic Fibrosis, what does that really mean? Most people who say it think that I am getting through a cold or some temporary flu and will eventually be healthy again.
Cystic Fibrosis is not temporary therefore their “better” isn’t realistic. So what does the phrase mean to me?
To me, it means I hope you have the strength to go home and do an extra treatment.
I hope that you do that extra antibiotic or spend more time with the vest.
I hope that you actually take your antibiotics as they are prescribed this time.
I hope that one day you wake up and decide to take the initiative to take care of yourself like you’ve always wanted to.
I hope that you know what it’s like to go a day without coughing in front of strangers so that you don’t have to hear that phrase.
I hope that your denial of this disease that is degenerating your body turns into acceptance and makes want to be healthier than you ever have been.
So to all of you CFers out there, no matter how you’re feeling right now, I hope you feel better.
“The research found that estrogen promoted the presence of a ‘mucoid’ form of the bacterium Pseudomonas aeruginosa in the lungs of women with cystic fibrosis.”
I’m not scared of my future.
Because if CF ever does get me, hurts me, makes me suffer, I’ll know that it’s nothing that I’ve done.
If CF does shorten my life, I’ll know that it wasn’t my fault.
It’ll be enough for me to know that I’ve done what I could to stay healthy for as long as possible.
I can’t change what CF will do to me, because nature will take it’s course. But I can try. And that’s enough for me to not be scared any longer.
(via cfgirlflying)
This relaxing start to summer has been the best thing for my lungs. I finally feel as though I can breathe, figuratively and actually. Semesters at college are time consuming. I can finally do what I want and not feel as though I am missing a deadline or wasting study time.
This is a great feeling. I just wanted to share.
(Source: emilycozort)
Has anyone else had it? I just wanted to hear about other people’s experiences with it. I had one particularly bad flare up, and maybe two others within a year of that bad one, but other than that I have been pretty much symptom free since.
I was in 6th grade. I woke up to find that my ankles were horribly swollen and aching, but I had a field trip that day so I was NOT about to miss out on that. We went to the Science Center and there was a lot of walking involved. I was hobbling the entire day and everyone asked what was wrong to which I would point at my freak show ankles and everyone gasped and felt bad (I still had no idea what caused this.) My only refuge was when we went into the IMAX to watch a documentary. Just kidding, there was no refuge because the boy who sat next to me was my 6th grade crush and he kept trying to play “footsie” with me. Every nudge of his foot into mine sent a shooting pain all over my ankle. This was my only “footsie” experience and I’m pretty sure I cried a little. Once we got back to school at the end of the school day, my concerned teacher allowed me to call my mother to pick me up to go to the emergency room, and off we went. I just wanted the throbbing to go away. We were seen by a doctor and he diagnosed it as an arthritis flare-up. The only treatment was 4 Ibuprofen every 6 hours. (Yes, that is over the recommended limit of Ibuprofen that a human is allowed to take in one day.) I was infuriated that he couldn’t immediately make this go away. This flare up and my iron clad will to go on that field trip caused me to be bed ridden for the next 3 days. But after that, it was gone, just like it had never happened.
So mysterious you are, Cystic Fibrosis.
Instead of accepting it for what it was, I did a treatment.
I don’t think that a lot of people understand that with this disease comes pain as well. I don’t think they know that I cough up blood sometimes or that it hurts to just breathe. I don’t think they know that I can only lay on my stomach sometimes at night because it’s the only position that keeps me from coughing. I don’t think they know that sometimes I puke because I’ve been coughing too much. Most of them don’t, anyhow. And I don’t want them to know.
A silent fighter. We all are. Fighting a seemingly invisible disease every day. We will continue our war until our last breath, and even then, there will be others who will continue for us.
The war will be over when people read about the disease in books and journals and only know it as a problem that can be fixed with a pill or procedure.
But until then, we must continue to fight.
