Living with Cystic fibrosis (CF) is a unique experience. Marrying a fellow person with CF makes our experience even more unusual. Join me as I share images, information and stories capturing the varied facets of living with CF x 2.
Capturing CF now has a Facebook page. The content will differ between the blog and Facebook so check both out. Happy Facebooking!
Over the last three years I had to become Dave’s carer even though neither of us wanted me to be. It was hard work to assume “carer” as part of my identity and for Dave to assume “caree” as part of his. We both struggled with it. Pushed back against it. Put it off for … Continue reading
The most astute amongst my readers will notice that I haven’t written a blog post in almost a year. Let me catch y’all up to speed real quick. Dave’s lungs tried to kill him. They didn’t give it an acute shot, but they certainly waged a successful chronic assault upon his ongoing physical life on … Continue reading
For the first time in nine years I have no venous access. I am 99.9% sure that my port has infused it’s last bolus. I have a portogram* scheduled later this week which will no doubt snuff out the last vestige of hope that it can be salvaged. Oh, holy crap sticks. Almost every human ably … Continue reading
Oh, f*ck. It’s happening. Oh, sh*t. We’re going in. Oh, thank all the gods. Someone else can keep him alive. Oh f*ck. Oh sh*t. Thank God. On repeat. Which of our neighbours can I interrupt to drive him to hospital? Of course, of course, the only people at home on a Friday night and answering … Continue reading
People often appear a tad puzzled when they see Dave on the scooter for the first time. They seem to find it hard to reconcile their picture of the Dave they just saw walking home from the local grocery store with the Dave they see on the scooter. I wonder what they are thinking. “Is … Continue reading
It’s been two years since we last caught up with Heidi and Andy. A lot has happened. Monty happened. They are now a content family of three with their longed-for fur child. A human child did not happen. “We found out that our second cycle of IVF failed on the same day we were told … Continue reading
The spark has gone out of my current gastroenterologist/patient relationship. He doesn’t return my calls or emails, or even want to spend time with me anymore. We just don’t talk deeply about the really important things in life, you know, like my poo. He’s just not that into me, I guess. It’s a real shame … Continue reading
When you or your child is about to be admitted to hospital for God-knows-how-long your head will be in a bit of a spin. Thoughts as varied as “When was the last time I shaved my legs?” and “Who will follow up with that suicidal patient?” or “I need some Tim Tams STAT to activate my … Continue reading
We recently sold our car. It’s no biggie because we live in inner-city Newtown where we can walk to everything except a butcher, because: vegans. Dave wanted to head to the Moore Park Supacenta to check out several pieces of furniture that he has been dreaming of buying for our home when we win lotto. … Continue reading
In the last month I have been existing in a dehydrated and randomly sugared state with a perpetually uncomfortable abdomen. As a result, I have been a bit of a massive grump. Stomping into the house to escape the hot and humid weather that almost melts me like an ice cube on my commute home. Getting snappy … Continue reading
