i keep starting posts…

by kaleidegirl

i have tried to post several times this week. you would think i would have no problem doing it being stuck in hospital but it gets pretty crazy here sometimes and i am spending as much time either out of bed or doing whatever physical activity i can in my bed.
(if i had my yoga mat i’d be getting stretched to do my yoga, i miss doing my yoga and i never thought i would say that and actually mean it, like, ever)

i’ve been seeing the transplant team most of the time i have been here. they are doing what testing they can while they have me here but it isn’t something that they are rushing to get done. just sort of while i’m here, might as well do such and such lab work or random EKG etc. one of these drs is not super friendly. she seems fine until she asks you a question then cuts you of like you are 5 years old when you start to answer rather than just like agree with her or something. its rude and its fucking annoying.

miss ‘stick up her ass’ keeps bringing up the requirement to walk, i think its 440-450 feet as a requirement to get on the transplant list. until yesterday i had no idea how easy this would be for me. i knew it would be no problem at all in the very near future but i walked about twice that, just on my second walk yesterday. day before i walked around 150 ft. yesterday i walked 300, then 600 then about 200. my numbers weren’t awesome but all things considered they were pretty impressive.

i could have made much more progress much sooner had i not been psyched out by the stupid numbers on the machine and the awful headache the alarm on the machines was causing…for no reason. my anxiety was actually telling my brain that i was short of breath when i really wasn’t. not every time but enough that it had me fucking freaked out and sure i’d never get out of here.

it may sound stupid but i really thought those numbers were crucial to my progress and escape. turns out it is totally fine to listen to my body and judge how i breathe and feel rather than letting the numbers on a broken ass machine tell me. i’m already doing really well on just 9L at rest and when i get up i use the other mask and i’m totally fine. i have what i need at home to have this exact set up. i look up at my O2 level and i could easily bump down to 8L, no problem. if i had a tank and could just adjust back and forth i would probably need much less while at rest. until then i have to deal with a little too much when resting and not enough to get up without the mask.

fuck this noise…let me out of here.

do i order up some fruit and such or wait an hour order an actual breakfast….?

once i am free of all these tubes and wires and shit i will post something not entirely focused on having busted lungs. i don’t want to and won’t let this disease define me.