If you should ever need to go to a hospital, go to a Children’s Hospital if you can. I have not written in a while because of many changes in my life. I am back. Today was my first appointment at Children’s Hospital in Boston, my home anchor. I think everyone should be able to […]
Category Archives: cystic fibrosis
One Trip
“Little Sarah gets her chest PT and keeps giggling. She didn’t cough once. One day, when she’s older and sicker, she won’t be able to laugh without going into a coughing fit. I hope that one day I will soon be able to laugh like her.” – Laura Rothenberg Laura Rothenberg wrote, and wrote a […]
The Rocket
You know you are tired when you have to take a nap before you finish your responsibilities of the day, meaning body passes out in convoluted and not always comfortable position. It takes the edge off. Then somehow, someway the will of the body says, “Wake up, must do treatment, and btw – don’t forget […]
Too Hard To Sink
A friend of mine said living with a chronic condition is a strength and a weakness. That is what it is. I have always stood up for the underdog, and yet I am an underdog on paper; a strength and a weakness. I believe in working with others not against. There is no peace in […]
WE RISE
I am angry. I am actually very angry, although I dislike using the word “very”. My MGH CF appointment was supposed to be this Thursday with this ridiculous 30-min pulmonary function test. MN feels they are worthless, which they are. I am a firm believer that if a test does not change your standard of […]
Heart
It seems to me in pretty much everything I read, the flashes of images, bits of propaganda from Pinterest to magazines, commercials, sound bites that do not stop – the only way to have a meaningful life is to have a Big life. I disagree. There are only so many hours in the day, and […]
A Toast
Too long ago does the train pass We forget where we have been, Who we are, who we have been, and Where we must go. My lesson to not let too much time go without writing. I have been writing, but a different kind of writing. Constructive then completely loose at other times. I will admit […]
Thank you.
Waiting for the long list of people to see me at the University of Minnesota CF clinic, Anne walks into the room, with a mission – as she always has. “How are you?” Anne says. “Good overall.” “What the hell has happened? You left 10 or so years ago with 100% lung function and now […]
The Dawn
I wrote this little didi about a week and half ago – The Dawn The Sun shuts its eyes, Gives a solemn sigh “Rest now,” the Ocean says, Settle in until the night turns over again Let me gather my friends – All the world’s Trees, you see They anchor you and me – […]
6, 5, and 2
Each day I am reminded of gratitude. Amazement. Even being thankful for all the quirky things in life. I went to my f/u CF appointment last week and I gained 6 pounds and my PFTs went up 5%. I have been working at gaining weight, but in the past it has been difficult to gain […]