I should be doing my treatment, instead I am upstairs in my writing room. I write better here, because it is where the writing is done. I have had many thoughts running through my head. I had a patient say the other day, “You are very present.” “Well, all this stuff is not easy.” I […]
Category Archives: cystic fibrosis
Claire Wineland
Claire Wineland: “Death is Inevitable. Living a life we can be proud of is something we can control.” I had been waiting for an update. I had never met Claire for obvious reasons, but she touched your heart as if you already knew her, as if you were friends. She had been through so much […]
Never Give up and Never Give in
I love to travel, although I hate to pack. I love traveling because a person has a chance for reflection. A person also has a chance to compare and contrast, putting all the nuggets in your back pocket; the good, bad, and the bloody other, whatever that may be. I take note of the infrastructure, […]
Sub-plot
I am writing a novel, or so I say that I am. I am trying. I am truly trying. Will it go anywhere? I do not know. But, I believe I have a story, cross fingers. I need to create a sub-plot or more than one sub-plot. That’s what I am doing here, buying time […]
All that is.
There is a lot of luck in this game. There is a lot of will in this game. I was derailed recently, very recently. Prednisone is a doozy. It hiked my white blood count to 22K, and that is after a week of getting better and feeling better. Normal range 5-10k. We had to bomb […]
Ah – thank you
I don’t really understand many things in life. Sometimes I think I do, and then I don’t. A very good friend of mine, during one and many of our discussions talk about how the best place is to start is by saying, “I don’t know anything.” Therefore, your ego is checked and the learning can […]
May is CF awareness month – welcome to becoming aware, five
Before this month closes, because I am not sure if I will have the brain cells in the next few days to write – I have to, have to, have to spotlight Josh Llewellyn-Jones, a 30 year old CFer that lives in Wales. The first time I saw him, I could not believe he had […]
May is CF awareness month – welcome to becoming aware, four
Organ donation and becoming an organ donor – Please become one if you haven’t already! Organ transplant – two words that sit in the back of many if not most CFers’ minds. There are a few people in my life that inspire me and one of them is Claire Wineland. This girl has gone through […]
May is CF Awareness month – welcome to becoming aware, three
Philosophy: I often ask myself and quite confused why some CFers are healthy and why some are not? What is that each of us are doing so differently? Is it because of their genotype? Perspective? Medications? Care center? Routine? What is it? To de-clutter the confusion, the genotype matters. I am not going to go […]
May is CF Awareness month – welcome to becoming aware, two.
Genetics – let’s keep this simple. I have to keep it simple. This is straight out of the CF Foundation as they have perfected the language: “To have cystic fibrosis, a child must inherit one copy of the cystic fibrosis transmembrane conductance regulator (CFTR) gene mutation from each parent. People who have only one copy […]