FDA approves new cell corrector medication – TRIKAFTA. I have two copies of the F508del mutation – the most common mutation. This is not a “cure” but, and a big BUT – this one medication has the potential to help 90% of the population. Let us hope! Vertex Pharmaceuticals is making more dreams possible. Exciting […]
Locomotion
I have been writing a lot this week, so I think my mind is slightly fried from putting words together – but here I am writing again. So, take note as you go forward, some of my sentences could be frayed. I feel like there has been a lot of motion of with my health […]
To story tell
Storytelling and the need to story tell. Not stories that are written from someone else, but your stories. I am not talking about stories about that one time you can’t remember what truly happened, but stories. People are reading and writing more than anytime in human history, but they aren’t really saying a whole hell […]
Next generation
I started a new cell corrector med. It is the next generation from my last one. New one named Symdeko, old one – and a good nugget as it has treated me so well, Orkambi. It is not the trifecta that is probably going to come out later this year or early next. I actually […]
Write your life
I have this belief that you can write your life – what you put down becomes true. We know this when we say things – so really not that different if you write it. Because of this belief – I sometimes avoid saying or writing down those real numbers, to not give it weight. Instead, […]
Trust your Pencil
While reading some of my new found literature, did you know that Henry Thoreau and his family own one of the most lucrative pencil manufacturers of the time? I did not. Some people could care less – I find it so interesting. So, as you may have read or at least heard of Henry Thoreau […]
Building-up
I figured out what that blood-clotting drug is – and I am happy I went with my route. The difference is that drug stops the ability to clot and what I am doing thins the blood. I find it slightly alarming that there is a “one dose fits all” kind of deal for that drug […]
Mrs. Tiggy-Winkle
I love life, I really do. Grow, expand – believe, push, take a deep breath and think and say some more. Narrow in on your goals; watch, feel the distractions, hindernesses fall not like feathers but big bricks that smash double-pane windows. Not your windows – No. The hindernesses. I love school. I love this […]
Today
I have listened to John Butler Trio’s “Ocean” thousands of times. I saw them in concert last year and by the end, tears. One of the most endearing books I have ever read is Hey World, Here I Am! by Jean Little. I found it in my local library and decided I could not let go of […]
In Truth
Last week while waiting for the nurse practitioner to come in the social worker steps in, “How are you, Tessa?” I’m fine, good. She looks at me in concern – “How are you fine?” I am fine, by me. In my head, I am thinking of a lot more than that – but really I […]