Short and simple – this is what the blog will be. Claire Wineland’s birthday is today. She would had been 22 years old. A light. A light. A light that is missed, yet – will never ever, ever, go out. I am doing what I have been doing, welcoming the day, working hard, trying to […]
God sent
This last appointment was a God sent. It is almost like the Universe has been listening . . . The doctors have been listening as well. The clinic received a grant for a pharmacist to assist CF patients. The pharmacist comes to you; sits down with you. The pharmacist came in and had my medication […]
A good orange hat
My spirit is reaching. Endurance. Strength. I have to say I truly dislike the month of February. I don’t know if it has to do with the exact opposite of my birth month – some sort of polarization going on, or just that the month is difficult with weather and a lot of darkness. I […]
Dreams
Today is a great day. It is the last day of Tobi. I am doing my second dose earlier than recommended, but I don’t care. I want to be done for this month. This precious hour is my hour that is on loan every other month. It isn’t bad, it is just nice when I […]
Settle in and break through
My head is buzzing. I am not sure why my head is buzzing – I think I need to exercise. I will, soon. I also have three projects roaming around and I have made progress on two of them – I think that’s good. Tiny, fun, fruitful, bouncing bits of energy. So, I decided to […]
The Artist
I am reading two books: Becoming by Michelle Obama, of course. And a little fluff – and yet not fluff. It’s actually quite interesting: The Most Beautiful: My Life with Prince – Mayte Garcia, Prince’s first wife. In the book, Mayte writes: “We shared a common belief that whatever you’re passionate about, you should learn about […]
Silliness
“Take on step off a hundred foot pole.” It means, can’t rest at your success. Or your failure. “I have written something wonderful.” Good, but it is a new moment. Write something else. – Natalie Goldberg, Writing Down the Bones I have written anything yet this New Year. I needed a rest. I needed to […]
Nutshell
Yesterday I did my repeat PFT and it went up 5%! It actually went up 7%, but I am not sure if that is accurate. I am never sure if any of my PFTs are accurate, but that is the score, recorded in time. I had made the decision that if my lung scores stayed […]
Pesto
I started watching this four-part series on Netflix last night: “Salt, Fat, Acid, Heat.” I heard the creator in an interview on MPR this last week and how she was talking about the history of olive oil and how Americans really don’t know very much about it. How olive oil is truly supposed to taste, […]
Tater-tot hot dish
I grew up around men with rough and course hands from endless days of gripping and pounding. Calluses formed and smoothed over their palms and inside of their fingers protecting their beaten skin, making them look larger than they were. Tiny cuts in and around the bends of their fingers, some bright red from moments […]