Two Steps Forward!

I just wanted to update everyone and let you know that I got my PICC line pulled and finished my IV antibiotics. It felt so good to shower without a plastic bag taped around my arm (I can’t get my PICC line wet) and to sleep without having tubes tangling up in the sheets.

Today my hubby took me out to breakfast at our favorite place.

Pancakes!!

Pancakes!!

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Dealing With Emotions When I’m Sick and In the Hospital

Early on the morning I was to be discharged, my Oxygen levels dipped lower than they should be, so they hooked me up to some supplemental O2. Thankfully, it only lasted a few hours and didn't affect my discharge plan.

I just came home from a week in the hospital for an exacerbation of my Cystic Fibrosis. Several rounds of oral antibiotics and increased airway clearance/chest physiotherapy weren’t enough to keep me healthy, so I headed back into the hospital … Continue reading

The Marathon Continues

My life has become a marathon. Whereas in the past, through my childhood and teen years, and even well into adulthood, my health was a series of stops and starts – a lot of sprints and then recovery time. But now, there’s no clearly defined periods of wellness or sickness. It’s all one, long, nonstop flight to infinity.

Big Hill Ahead!

My doctor appointment last week showed that I’m experiencing another lung flare-up/exacerbation/active infections. With more bugs than I can count on one hand, it’s a crap shoot to figure out which of the bacterial strains actively growing are making the loudest noise.

My lung functions are down, I’ve lost weight, and I’m worn out. My doctor suggested that they admit directly from my appointment, but I begged them to give me some time with oral antibiotics (hoping that they some of the bacteria that’s acting up responds to them) and increasing my airway clearance (as close to six hours a day as I can do). Continue reading

Cystic Fibrosis: Simply Surviving

Sometimes I want to scream to people, “YOU DON’T UNDERSTAND!”

Every so often, someone will send me a link to a news article or blog post about someone with physical impairments doing amazing things – a marathon runner with artificial legs, a blind skydiver, a model with a colostomy bag. The moral of the story is usually something akin to “they never gave up” on their journey to achieving their personal dreams despite what most people would consider a disability or limitation. Continue reading