This year I am having a hard time with the Christmas season. It literally changes year-to-year – I have no idea how it will be, how I will be. I am fine in all aspects of being “fine”, but I am always much better on December 26. It will change in a snap, just […]
Category Archives: cystic fibrosis
Making an Attempt
I am going to try something and I am not sure if I will be successful at it. Frankly, I am not sure if I am ready for it, but as with most things you have to try. My over-arching goal in life is to live more whole. To put pieces together, sew them up […]
In Awe
Days turn into weeks, into months, and into years. I am in awe of this. I strive to get the most of it each day. Reading, writing, being, believing, and hold this energy to let it go into something better. It is one more day to a different story, maybe a better story – I […]
To Feel Alive
Taking pleasure in the little things – the things that you are doing without even being conscious of it. The evening of getting my PICC out I decided to go to some of my favorite places in Boston. Sheila was out-of-town at Headquarters in CT and I needed a celebration of sorts so I went […]
One of My Favorite Things
One of my favorite things in the world is not coughing. It is the small things. In my case, probably not so small. I, thankfully, got a PICC placed yesterday as an outpatient. Two-weeks of potent, knock the socks off of you, drugs. The infusion nurse asked me yesterday if I was nervous. I am […]
Just Stop. Listen.
Yesterday I turned 37, nearing 40. I have many goals for myself – striving to make 40, Fabulous 40. I want to feel strong, focused, and feel damn good. I have a list of objectives, of course. I want to feel and be better than ever. Just making that declaration is a good place to […]
Numbers
As I was trying to fall asleep last night the words “numbers” kept circling. I decided it is time to talk more about my hospital stay, since numbers are everything. When I am admitted the over-arching goal is to get my PICC placed and start my antibiotics to get my “levels.” The PICC line is […]
Dear Friends
“In order to get a friend, you have to be a friend…” – Maya Angelou When I heard this quote – I knew it was relative to friends outside of me, but I always think about being friends with myself first. I must be friends with me before anyone else, because plainly I will make […]
Cue it
I love a full sound, a full orchestral sound. Your hairs stand and it feels as if the music is coming from inside and echoes, shakes, stirs, swirls around you – wrapping you in this cloth of sound. It feels limitless, boundless. This is my wish. The last two weeks have been extremely difficult. I […]
Say It
On “Oprah’s Soul Sunday” series she asks each person she interviews “What has been the most difficult thing for you to learn?” I would answer, “To live.” “To thrive.” Sheila and I have talked about when people have asked, “If I ever thought I would be married to a woman?” No, I never thought I […]