I don’t really understand many things in life. Sometimes I think I do, and then I don’t. A very good friend of mine, during one and many of our discussions talk about how the best place is to start is by saying, “I don’t know anything.” Therefore, your ego is checked and the learning can […]
May is CF awareness month – welcome to becoming aware, five
Before this month closes, because I am not sure if I will have the brain cells in the next few days to write – I have to, have to, have to spotlight Josh Llewellyn-Jones, a 30 year old CFer that lives in Wales. The first time I saw him, I could not believe he had […]
May is CF awareness month – welcome to becoming aware, four
Organ donation and becoming an organ donor – Please become one if you haven’t already! Organ transplant – two words that sit in the back of many if not most CFers’ minds. There are a few people in my life that inspire me and one of them is Claire Wineland. This girl has gone through […]
May is CF Awareness month – welcome to becoming aware, three
Philosophy: I often ask myself and quite confused why some CFers are healthy and why some are not? What is that each of us are doing so differently? Is it because of their genotype? Perspective? Medications? Care center? Routine? What is it? To de-clutter the confusion, the genotype matters. I am not going to go […]
May is CF Awareness month – welcome to becoming aware, two.
Genetics – let’s keep this simple. I have to keep it simple. This is straight out of the CF Foundation as they have perfected the language: “To have cystic fibrosis, a child must inherit one copy of the cystic fibrosis transmembrane conductance regulator (CFTR) gene mutation from each parent. People who have only one copy […]
May is CF awareness month – welcome to becoming aware
I have been writing this blog for a few years now, and I have never mentioned it. In the past, I have often thought “People know what it is.” However, it seems they often half know what it is. Whenever I am in a new space, people often notice that I am taking something like […]
Believe
I believe in the impossible. I believe every person has the ability for the impossible. Every waking step, interaction, breath, tied up shoe lace, drop of sweat and tear, sleepless night and glorious day – I believe in the impossible. I think I always have. “Why not?” One caveat – hard work and determination must […]
Planning
You know what the best thing in the world is – sleep. I am thankful for so many things. I will say, I am not thankful for everything, but I am trying. I am so thankful for physical relief. I am so thankful for not feeling nauseous from lack of sleep. I also extremely thankful […]
You
“Can you do 3 treatments a day?” “Some days.” “Try, if you can.” “It is all too much for me.” “You can’t get life insurance?” “No, I don’t live long enough for them to get enough money out of me.” “That discriminates.” “Yes.” Even a 10-year old can do it (paraphrased). The Elements of Style […]
Life
1. Dropped TA class. Never heard back from Professor so wasn’t sure if I was supposed to go today because in the email she said she was going to talk to admin how to proceed. I wrote a follow-up email, no answer. I must be at class by 2pm. I must have materials ready for […]