the little things are enormous in times like these

by kaleidegirl

i warned you these blog updates might get repetitive and boring but i also explained that they help me clear my head and keep a good record and occupy a little extra time in these long days.

i’ve been having issues with night sweats. i get very clammy and gross but also quite cold. its very uncomfortable and very gross honestly. i had them turn down the temp in here yesterday and after sitting for awhile away from the blankets i started to feel better. then i got washed up and into fresh clothes and feel even better still. i found some bobby pins to put my hair up a bit and generally just feel much more comfortable.

i may get to go outside for a bit today. maybe. i’m going to have my lunch soon here and then ask about that. i know it is stupid hot out and i am ridiculously photosensitive but damn. i need fresh air. i have them keep my door and curtain shut so i can keep my music going and use the bathroom whenever i need to without having to wait for someone to come close the curtain. it also eliminates the feeling of living in a fish bowl. i mean i’m already the goth girl being walked like a dog three times a day. the staff is clearly talking about me. my nurse mentioned me “having a crazy experience” getting here. i had no idea what she was talking about. then one of the drs asked about my “boyfriend the chef”. i said i had a husband and he is a great cook but he is not a professional chef or known publicly for it or anything. i don’t know where this stuff is coming from. i don’t mind, like i’m not offended or anything i’m just confused but don’t want to ask about it. once Chris shows up tomorrow they will have concrete gossip for the remainder of my stay on the floor. he rarely has to even ask for directions to my room. they see him and just know he’s mine. they assume he is a biker. they often think he did all my tattoos. it is amusing. not just because neither of those things are remotely true but because of what is true. man i miss him. i can’t wait to finally see him. we didn’t have much alone time the week before all this went down so the distance is a little sharper.

its friday so things will be slow and boring. the drs came around like they do. i’ve seen the same one every day for a few days now and she said she’d be the one i see most for the next 2 weeks. nothing has really changed. my condition, my oxygen needs, my labs. the plan is the same. will be down to 20mg of prednisone tomorrow and once she comes through to see me and things are still the same she will put in the call to re activate my status on the waiting list. the only other thing they are doing is giving me Lasix to combat any fluid on my lungs. my days for the time being consist of taking walks and breathing on this machine.
~~i have a wiki link about said machine that i will link at the end of this. i’ve had a lot of people asking about it. it is not something that can go with me. needing it is the reason i cannot go home.~~

my breathing will either improve enough for me to get the oxygen i need with my home set up or it won’t and i will be here until i get the call. i might stay at this plateau i’ve been at at my current flow rate until that happens or maybe get down a little but not enough or even get worse. there is no way to know.

the wait here will be the same as home. the same stars have to align to get the right match. the biggest difference is that my score will be higher here than if i stabilized enough to go home. logically i will get the call much sooner if i am here in this state.

i’m basically OK with this because i am eager to get my life back and willing to do whatever i have to. suffer the boredom. be away from my fantastic husband. miss out on dates with my girl. worrying about my pup being alone more than usual and probably so confused about where i have gone. i might be stuck here on our anniversary again and Halloween and maybe even the rest of the holidays. who fucking knows. but i will stick it out the best i can and hope that call comes soon.

hell, i could suddenly start improving and be home next week or something.

my life is so completely up in the air it is hard to wrap my brain around sometimes.

if you have questions about any of this process i am happy to answer to the best of my ability. i don’t mind talking about it. it doesn’t upset me.

if you want to call, do call. obviously i may be unable to answer. routine in rare here, there is no way to say what a “good time to call” is.

if you want to video chat, i’m game. just have to work out whatever method is best for us.

if you want to visit that would be lovely. just give me a heads up if possible. i get myself cleaned up and dressed as soon as i’ve seen the drs in the morning. if i do it sooner i run the risk of not seeing them unless they happen to be able to come around again.

if you read this far i hope it wasn’t too repetitive. i’ll start re-reading previous posts to be sure i’m not just saying the exact same shit every single day.

~~~here is that wiki link about this machine keeping me alive. it is actually somewhat new technology. still a lot of testing going on to really understand the benefits and risks and uses.