Have I ever told you that a very large percentage of the time when I fly I get the guy or woman that likes to lean their chair back, oftentimes way back cutting into my precious airspace? In the past while setting my head down on my pull-down table, just when my eyes finally close […]
Category Archives: cystic fibrosis
The Gopher Way
I have not written in a while because I have not been well. I have not had the health to write. Something small turned into something much larger. Last week I came into the hospital with shortness of breath, and come to find out pneumonia is real. I don’t want to write much about how […]
Mending the pieces
I have been quiet because I have been blessed with diseases. However, drinking lots of water, rest, treatments, and drugs – seem to be muting and resolving them. And just knowing – this to shall pass, really does help. For some reason, yogurt tastes phenomenal; smoothe and comforting. Not to mention – I am very […]
As we do, how we do
My ears will not stop filling and popping. Life is muted and then confetti! Today, today, oh glorious day – I think I can muster some thoughts together. I have had this cold for almost a week, seemingly working its way out. I have been doing three treatments when and where I can, sometimes just […]
2000%
What a great day – My PFTs went up 5% – which is pretty amazing. However, I can’t take full credit. Yes, the air came from my lungs, but the respiratory tech showed me a new technique – a technique I had never been shown before. The last time I went to my doc’s in […]
Two to Share
BIG NEWS! Vertex announced a new drug application to the FDA – it’s a big deal. Link at bottom. To add – I just want to say that people in Minnesota are so nice. There is the passive-aggressive behavior no doubt – but when a Minnesotan is nice, they are genuinely truly nice. I have […]
A girl of fourteen
J.M. The Patient. A girl of fourteen with round cheeks, blushes of pink blooming. She sprouts, freckles that show her youthful fresh-face. Bound for sweetness. Then the reel comes; no way out. Deeper than the earth’s fire she wheezes, she roars, inflaming the groundlings of her lungs. Bogged branches climb her airways, her voice is […]
I am not giving up
Minnesota is conundrum. Some people know this and many don’t – one of the main reasons I left Minnesota is I followed my gut. The last year I was in Minnesota I had hemoptysis four times. Each time I got treated and started to recover – the weather and air quality turned me upside down, […]
At first glance
My treatments take forever. I am just saying, they take forever. Mentally, it is a daily exercise. I never told you about this machine; this vest. My other one died last fall – like September or October. Years ago when I got a new upgraded vest I paid 20% upfront to always be eligible for […]
Quandaries
I love my writing room. This is where ideas that move around in my head all day settle, ground me. I have a writing playlist, and that sets the tone. Then a bug flies by my head. A friend of mine recommended this book called 18 minutes by Peter Bregman. It has wonderful things to say – […]