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!
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
At the beginning of each year there is one week where I get my 1950’s housewife on. I bake. From scratch. Mostly from scratch. Ok, on the whole, not really from scratch. But the point is: I BAKE. In preparation for my return to work tomorrow I have baked muffins and biscuits. Muffins and biscuits, … Continue reading
I had my wisdom teeth out. To be pedantic, I had a “coronectomy” which is what all the cool kids (with stubbourn teeth that have roots lying in close proximity to important nerves) are having done. They butterflied my gums and cheeks like a leg of lamb, exposed my wisdom teeth, gave them an experimental … Continue reading
7:10am – I wake up. Before my alarm. Why? Why, on a day off from work, when I cannot even eat or have a cup of coffee to assuage my gnawing hunger, do I wake up early? 7:45am – Despite waking up early and not having anything to do except dress myself I leave the … Continue reading
One positive of Dave’s most recent admission was that he was treated by the senior physio. Words cannot convey the value that she has for me, for us, and I daresay, every adult with CF at RPA. Dave and I are very valuable to her too. Since we are married and have accepted a certain … Continue reading
The Annual Review is an institution in CF care. Because CF affects a heck of a lot a huge amount of data is produced during annual review tests. It’s common to check up on bone density, fat-soluble vitamin levels, kidney function, liver function, hormone levels, auto-immune markers, X-ray, CT scan, Cystic Fibrosis related diabetes (CFRD) status, lung … Continue reading
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
