Hospital shenanigans

Hospital shenanigans

The first week He’s admitted. He can start the intense process of finally turning things around. More importantly, I can eat gluten and dairy again. Our dogs can sleep on the bed. Halle-friggin-lujah! In between shovelling creamy pasta into my mouth and snuggling our fur kids to sleep I check in with him. He is … Continue reading

There is no “I” in team

There is no “I” in team

In August of last year Dave and I took a trip to Rydal. In the middle of winter, with snow falling, we needed the wood fire. Dave just so happens to be an expert at setting fires. He has mad skills. He has a sixth sense about where to find the perfect amount and substance … Continue reading

When Heidi met Andy

When Heidi met Andy

In 2011 Heidi Prowse had an absolute cracker of an idea. To cajole friends and family into stripping down to their Speedos, donning Santa attire, and running laps around a Canberran lake in the middle of freaking Winter. These crazy-but-in-a-good-way people were not focused solely on a chilly exercise session but would find sponsorship for Cystic Fibrosis … Continue reading

#whatsinmybag?

#whatsinmybag?

The other day was our first drizzly and autumnal day in Sydney. I snuggled up in a coat, grabbed my umbrella, wore rain appropriate footwear (read: boring) and set off for work. Whilst waiting for a green light to cross the road my attention strayed to a young guy who was also waiting to cross. … Continue reading

Vividly limited

Apparently Dave has never walked across the Harbour Bridge before. Say whaaaaaat? We’ve been meaning to right this considerable wrong for a while but the timing has never worked out for us. This weekend however, Dave had the brilliant idea to complete the crossing in the cool of Saturday evening. We began our stroll whilst the … Continue reading

Grapefruit and other killers

Grapefruit and other killers

To say that we have complicated medical regimes is like saying that waves have a slight tendency to err on the larger side in a tsunami. 99% of the time I ably coordinate what meds I’m taking and when but these last few weeks have been the other 1% of the time that I just can’t get it together. There’s a … Continue reading

2015 was sponsored by….

2015 was sponsored by….

Y’all might have noticed that we’ve entered a new year. Thank you to our sponsors throughout 2015! Exercise Orkambi Blogging Celebrity status Home IV fashion parades Hospital sunsets Facial hair contemplation Coffee… and Vertex Snacking Ten years of marriage Rydal relaxation Achieving goals Pre-medicating for bushwalks Sydney sun Being happy  (even when you look like a … Continue reading

Canapés: unexpected challenges for a person with CF

One Friday night Dave and I thoroughly enjoyed ourselves at the celebration of a fifteenth wedding anniversary. We were surrounded by happy and friendly people, good food, endless Moet and manicured gardens. It was a perfect evening. We were served canapés. Scrump-tious. As I enjoyed each plate of deliciousness I began to remember that canapés can … Continue reading

The Hospital Vortex

The other day Dave spent more than ninety minutes waiting for medications to be dispensed at the hospital pharmacy. Everyone I’ve told simply can’t believe how long we needed to wait. And they have a point.

O Day

O Day

We both have dates for our transition from the Orkambi clinical trial over to the marketed dose of Orkambi. My O Day is scheduled for November 20. Only two weeks away. I am expecting my health to stay exactly the same.