no need to be inspired, i’m not doing this alone

by kaleidegirl

my nurse was loud and inconsiderate last night. not rude just didn’t seem AT ALL concerned with the fact that sick people need sleep. i know if Chris had been here he may have given her a what for like he did the night before and i don’t think that would have gone too well.

i’ve noticed when i have one of the not so awesome nurses it is at night. now i’m not nurse bashing here. i love and respect nurses for all they do. they just aren’t all as awesome as Katelyn. who i think is actually a newbie.

my trach cannulaa was supposed to be downsized for the last 3 days. yesterday they said they would do it today. its getting pretty frustrating. they are literally holding up my getting discharged. every new step towards leaving requires a day or two of observation to be sure i take to it ok. once the trach is downsized i can get a speaking valve and i guess couple days after that i can have the trach removed. it sounds like aside from that i just have some learning about the new rules of my life. like a sort of teaching class type thing.

*dr just popped in to say they are coming to downsize my trach. she’s also going to give me IV ativan. my anxiety has been off the charts*

~~~well that was absolutely awful. the skin around the balloon in my trach had started to heal around it so she had to give me lidocain and add to the incision to get it out.~~~

~~its weird, i’m recovering and healing much faster than anyone expected yet i feel like i have a long wait to get out of here still~~

i totally won’t lie. i’m feeling a little bitter. i feel like its terribly unfair to wake up still short of breath and having to relearn how to walk because my body was so deconditioned. i’m doing better at getting around but if i didn’t feel so short of breath i know i could do so much more. i can sit in room air just fine but once i get up even to take a couple steps i get short of breath and my legs still wobble a bit. i’m just so frustrated. it seems like every procedure involved with this process is a shit show. my biopsy 2 years ago was a nightmare and the last few weeks here has been even worse at times.


did i really work hard enough to get strong for this? did i follow the rules? is it all a punishment? is it a bad dream i will never wake up from?

i know these things are different for everyone but i’m too young and healthy for so many complications.

acute rejection already.

hands trembling worse than ever.

blurry vision.

upset stomach every morning.

need sleep.

and Chris is at home working on a huge cleaning list. so sure i’m coming home this week. *no pressure or anything* though i do hope he’s right.


so i have my downsized trach cannula and my speaking valve.  i think i might go ‘live’ on FB for the first time ever. i do of course need some make up first.

one of my doctors said something very inappropriate a couple weeks go, right in my room at the end of my bed. “she just needs  fire lit under her ass”. later that day my social worker came to see me and was appalled.  surprise surprise, she’s been super sweet ever since. so much so that she spent a good half hour in here trying to help me through my anxiety. she even suggested a therapy dog which she expected me to laugh at but Siobhan is actually a service dog. so Mary is coming today and bringing my pup.

sorry this blog is all over the place. my mouse is acting up and i’m distracted by the storms. worried about so many people in danger.

better luck next time.