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 […]
Category Archives: cystic fibrosis
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 – […]
Trees
I came up with a plan today or goal. My plan is to return to the MN CF clinic 3 times a year, roughly once every four months. I also decided to schedule my PFTs routinely there as well. I want it to be as close as a controlled study as possible. Last time I […]
A Gorgon and A Frog
I got permission to share a couple poems from another friend. I am actually going to just share the one at this time. The other poem which I want to share – is a bit bolder. I will have to think about it. It might be a bit for my blog. Hmmm . . . […]