Learning To Live

I have cystic fibrosis.  I have other health problems, too, but CF is the biggie.  It's the one my parents stay awake at night worrying about.  No one worries because I have fibromyalgia or because I have endometriosis.  I know my parents are concerned and sympathetic if I am having symptoms, but it doesn't keep them awake at night.  My CF (sometimes called 65 Roses by children) is currently fairly well controlled thanks to the Mannitol - my miracle.  My parents and I are sleeping better at night; they aren't up worrying and I'm sleeping soundly with my O2 taped to my face - my second miracle.  I couldn't be happier with the way the Mannitol and now the oxygen at night have helped me.  They have allowed me to pursue a dream - something I thought I might never do because of my cystic fibrosis.  I am dancing with 65 Roses.  This story goes all the way back to September, when I lost my babysitting job.  It wasn't my fault - the chi...

A long time ago - about three years, I wrote about first a home health company bringing Big Ugly to me, and then a couple months later taking him away.  Big Ugly was my first oxygen concentrator.  Big Ugly was just that - big, ugly, and also really noisy.  I hated that thing, but sleeping was better and eventually I needed O2 during the day as well, and then when my PFTs went up, they took Big Ugly away.  And I was Happy. But I was also sleepy... for three years.  I have been The Queen of Sleep, She Who Sleeps A Lot, The One Who Is Always Asleep for about three years now - and it's gotten worse over the course of those years.  I have switched CF centers, and mentioned my sleepiness when I went to clinic a week ago.  They eventually (after several grueling days of knowing in my heart what I needed and not being able to get it right away) decided I need O2 at night.  So Big Ugly returned... but this Big Ugly is less big, less ugly, and definitel...

You breathe, I breathe, even the terrorists breathe. Some of us just have more trouble than others breathing. I happen to be one of them. I know my lung functions could be a lot worse, but I'm not happy with where they are. I will now try to explain PFTs in as few words as possible. Pulmonary Function Tests - lung tests. Spirometry - the most common lung function test. I breathe in REALLY deep and blow out the air as hard and as fast as I can... and keep blowing until there is no air left. There are three numbers they mainly look at: First, FVC - Forced vital capacity , the amount of air a person can expire after a maximum inspiration. The total air out is the FVC. My FVC is running about 90% predicted when I'm healthy, about 75-80% when I'm sick. I don't like those lower numbers. The second number is FEV1 - Forced Expiratory Volume in 1 Second. This is the amount of air I force out in the first second. My FEV1 is about 60% when I'm healthy (not happy...) and...