Nonsensical Rambling


The helicopter is roaring in again - 4:30 am. I’m proud because I think I slept a solid four hours in a row last night and I’m sort of awake now. Awake and listening to the multi-level sounds in my room. It’s dark in here other than the phone screen, which I’m sure is terrible for my eyes. There’s my shallow breathing because I haven’t built my diaphragm up. I can’t say rebuild, I never really had to use it before, was never really able to. Then the copter is flying overhead.

My mouth is so dry it isn’t funny... I haven’t been allowed food or drink for weeks. Not even water or ice chips. I have never wanted an ice water so badly. I’m now that person who can’t move by herself. I need a couple of people to come move me. They’re feeding me just enough now - through a tube in my nose - to make it so I can’t wipe my own ass.

I lay here most of the time unable to move much except my arms and even those are twiggy toothpicks. I can’t move my own head, I can’t lift my own legs. People have to move me around, “do you need a boost?”, “can we reposition you?”, or “let’s get you onto a side” I hear all the time.

My modesty is gone, I guess that tends to happen when every male or female has had to change your foley and wash you up. I no longer care I’m too skinny or I have tiny boobies - it’s so unimportant. So trivial. Just the fact that I don’t mind my gram helping wash me now shows how little I can care. I am just an outer shell.

My legs look like chicken legs left in the fridge as leftovers. No kidding; they’re tiny, dry, shriveled, and pretty useless. I’m working on them as often as I can to get my strength back up, but it’s not super lucrative. It’s a slow process.

I have pain that mostly I forget about unless I let it get too bad. I just had a double lung transplant and my new lungs look great. At least according to the x-rays. I want to take this time to thank my donor and their family. Without organ donation, I would not be alive right now.

Consider being an organ donor and if someone you love passes away, donate their organs... it’s a selfless gift to give back to turn a negative into a positive.

I’m nonsensically rambling now, so I’m going to sign off for the night... but thank you for reading and thank you for your support and love! As always, I couldn’t do this without y’all.

#cysticfibrosis #invisibleillness #determination #hospital #lungtransplant #lungs