It has been a long time. When I am doing, moving, changing a lot, I don’t write a lot. Writing is reflective, an assembly of my thoughts. How have I been lately is crap, literally crap. The funny thing is I don’t usually give into the crap feeling state; I hustle and charge on through. […]
Category Archives: cystic fibrosis
No Title This Time
What can you believe? I just read an article on what the actual cost of the CF drug already on the market to help 4% of the CF population is – $294,000/year. This crushes me a bit. I knew it would be high – Damn. I don’t want to be like the Russians. I read […]
Bollocks!
I have hammering out P90X and P90X2 months, and have been doing awesome with it. I have been building muscle that I have never been able to do – but I need to do up the Annie. I read my last progress note, and even though I am in the “normal” range for my PFTs, […]
Gratitude
I have been trying to compile all these positive and negative energies surrounding us: What to do with this information? How to filter it – taking it in, processing it, while not having it suppress us at the same time? I don’t know if I will be able to accomplish this in this post, but […]
So Simple
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 […]