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 […]
Category Archives: cystic fibrosis
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 […]
Steadfast
I have a number in my head. I want that number. A lung score number. I believe I can achieve it. I am realistic and I do not believe it can happen overnight. My PFTs at my appt yesterday showed some improvement. My PFT’s definitely have shown an improvement from a year ago. The number […]
Two Good Somebody’s
I believe in guardian angels. This may sound silly to some, but I truly believe in them. I believe I have two, and I believe I know their names. The reason I know their names is because a friend of mine who one could say is a clairvoyant. I think a psychic would be a […]
Getting It
I am taking a pause for a moment to write about CF. It was just announced at the North America CF Conference (NACFC) that the average or median lifespan for CFer’s just jumped from 41 to 47 – I am sure due to Orkambi. This is amazing news. The variables are in question. Now, there […]
Fat
“Would you like something to eat?” Bettie asked me as soon as the wind carried the storm back out to sea. “What do you have?” “I hope you like fat.” I did not like fat. Bettie went through a tube of real butter each week. Deep fried chicken nuggets to turkey. “Can I have some […]
Swat
I went home and I packed. I packed way more than I needed to, yet, since I didn’t know where I was going or for how long, over-packing seemed quite normal. I climbed backed into the van. This van was one of those big metal vans. Not a cute crossover, but a big van with […]
Work in Progress
I am not sure if a storyteller, but I sit down and I keep trying. I decided I am not going to try and make this perfect, (i.e. I am sure I will find all sorts of little mistakes tomorrow. I will fix then). And writing, as well as everything in life, is a work […]
Happy National Coming Out Day
I am going to try something here. It may work or it may not. My attempt is to tell my story in bits and pieces. Perhaps like several short stories or chapters. I don’t truly know yet. What I do know is something can be learned. I am biased and this is from my perspective, […]