I have been absent writing and reading; trying to wrap up my class. I still have to make some edits . . . My brain is quite tired tonight, so forgive me. Yet, I want to say a couple things. I want to say that going to graduate school has been one of the best […]
Thank you
When you live with a life-threatening condition – and I am not even going to put that in quotations or downgrade that – you always plan and prepare for the worst. You plan and prepare to when you can’t anymore. I save, I don’t do things I would really love to do – because getting […]
The More I Write
Remember I was talking about goals the other day – well I refinanced a loan of mine for a lower interest rate. So great. And good news – I haven’t focused on my impending hospital bill. Knowingly I have already maxed-out with my pharmaceuticals and knowing approximately the damages. The total of my two-week stay […]
Learning
I recently started talking to someone, a professional. Someone separate from the hospital. A different space. I caught myself a couple times saying or thinking, “I think I need to speak to someone.” My brain notes – I am speaking up which I do not always do. I always have someone I can talk to, […]
Peculiarity
Something very peculiar is happening . . . I am not coughing. I may cough once or maybe twice in any given activity but I am not coughing into a spiral or bronchospasm. I am not coughing when I get out of bed. I am not coughing when I lean over to put my socks […]
Superman
Gosh. I came home and did my 3-minute machine and then changed to do my treadmill – I could definitely feel my sugars getting low. I had a snack bar in the car but perhaps, I guess, not quite enough. So – I did 15 minutes, had to stop, eat, and now I am finishing […]
Practice, practice
Yesterday I received an email from Children’s that since the FDA passed the new med on October 21st – some patients have actually received the new drug. They have a system in place – thank goodness and they are writing out scripts to patients who are seen in clinic and then the patients who have […]
Forceful thinking
I am getting more and more excited. I read Gunnar Esiason’s blog last night and my mind is trying to take it in – or encompass or even hold the possibility. He writes: The first few weeks of the study were some of the most powerful of my life. My lung function seemingly skyrocketed overnight, I […]
Flip-flop and filled to the top
So I fucked up. I forgot to do an f/u response paper to my presentation that I did three weeks ago. It didn’t have to be too long, but I needed to answer four questions. It isn’t a huge percentage of my grade but still. I remembered and then I forgot. My professor emailed me […]
TRIKAFTA
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 […]