I started writing this two weeks ago; wasn’t sure where I was going. I decided to leave it actually. We have arrived. I am not exactly sure what that phrase means, but my thoughts keep repeating it. 2012 is going to be “blank” year. What exactly, I am not sure. It is early, but my […]
Imagining Just That
Having high expectations is difficult; I believe I was born this way. My physician told my mom and dad at one point in time, when I was quite young – not too long after my diagnosis “You have to be perfect like God – and even then Tessa may not live” regarding my treatments, medicines, […]
The 3 musts
There are so many things on my mind I am not sure where to begin. Primary, is the excitement I cannot contain regarding the development of the new drug that treats CF at the cellular level: VX-770. Then, the trial that is in Phase II: VX-770/VX-809, which is aimed for my genetic mutation is also […]
The Door of Revolving Resistance
I wish for a world without resistance. I wish for patience, love, forgiveness, understanding, friendship – all without a byline. I wish that people would go out in their daily lives with the assumption that FIRST people are good, while at the same time understand that sometimes they do bad things or make mistakes – […]
Doing the BEST that I can
I had my f/u doctor’s appt today. First let me tell you the lay of the land – i.e. the new clinic – is comfortable, clean, quite beautiful actually, if a clinic can be. It is in a new building, completely separate from the hospital; all for CF patients. They have food and refreshments available, […]
Back to the Basics
This time I knew the title right off. Sheila and I cancelled our trip to Maryland and DC because spending money gives me stress – stress that puts stress on my health. Last Thursday this lady smashed my car. I believe I was in the absolute right, while Mass being a fault state compared to […]
Weaving
I exhale. I feel like I am climbing a mountain. Not just with CF, although I think that it is where it began; but showing, being, acting as if one should. “Be the change you want to see in the world” – Ghandi. Apparently I am striving to be like Ghandi, kind of a lot […]
Just Saying
An old classic, “Fumbling Towards Ecstasy” by Sarah McLachlan, can’t go wrong with that . . . When I was in yoga today, I had trouble of letting go and focusing on the practice. It felt good, nonetheless; but a little trouble. I printed some communication notes from my CF doctor to my primary about […]
As One
Trying to find my words. I know they are here somewhere. I am in my sixth week of P90X. My strength is building. I am getting definition I have never had. With most CF folks, if you know or not, it is hard to build muscle. I did a glucose intolerant study in my early […]
Protein Pac Man’s
It is funny, because I feel as if I should say “Hello” each time I start a new post; so, “Hello”. The challenge at hand: to sustain. I am in my fifth week of P90X. I can feel the difference in my strength. I feel energized, yet exhausted at the same time. Twice this last […]