“Accidentally on purpose…”

the attention just encourages her..

Month: May, 2016

i keep starting posts…

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.


monday can go suck a fuck

not sure if i can do this today but i will try.

my head and neck hurt but i don’t want to have to take norco to fix it, which is exactly what a norco will do. i’m trying a heating pad. nothing aside from the big guns has an effect on headaches for me that i am allowed to take, well maybe i should double check that because it would be nice to not have headaches without the need for those big guns.

i don’t know what is causing these headaches. been getting them at and/or morning for several days now. i had hoped it was just the hospital bed and pillows but it is still happening here at home with my awesome memory foam bed and pillows my head thing were quite happy with before the hospital. i expect to hear from my specialist or at least Nurse Chaz today. i sent a message over the weekend about some stuff.

i can’t remember if i told my dr that i wasn’t planning on a transplant but would let the transplant team evaluate me for one. maybe i did and that is why he stopped coming to see and check up on me the last few days in hospital. maybe he thinks i’ve given up. i don’t know but he does need to know i have done even more research and decided to trust the drs for the most part anyway.

i have tons of calls to make and things to fix, cancel, reschedule, pay etc and my fucking head and neck are killing me. normally the day of the week is irrelevant to me but right now it sucks to be monday.

to be continued…

too much too much

this post is here for anyone i am following that has blogged in the last couple weeks or so.

i was in hospital for a week due a flare up of my lung disease. i am sure i had plenty of time but it was a busy stressful stay most of the time and when i did feel i could get out my laptop for awhile i was just too overwhelmed by all the posts in my inbox. i wanted to read them but i just can’t catch up without the list growing everyday still overwhelming me. i was already struggling to keep up despite the fact that i was very interested and curious and wanted to blog myself.

i had to delete all of my subscription emails which are 99.99% blogs. i know you will understand and probably think i am silly for posting this but i feel like i have been distanced from all of you just as much as the people i normally interact with regularly on FB.

if you or some wwe both follow posted something i may have deleted that you think i should make the time for please link it in the comments of this post and i will read at least one of them everyday. i want to know how you are and soak up the knowledge and humor you share here.

i'm here

the thousand hour blog

things are a bit crazy these days. my breathing is almost as bad as it was when i left the hospital. i might have had a heart attack a few days ago, if that is what it was it lasted an hour or more, i forget now because it started to fade in waves of excruciating chest pain. no i didn’t go to the ER, i was sure my husband was trying anything else to avoid having to take me. he says that isn’t true and that he asked what i wanted him to do. he never asked if i wanted to go to the hospital though so that was just him covering his tracks. he’s an aspie, specific questions and answers are his thing. i don’t blame him. what if it was just really really really bad heart burn from my prednisone. what if it was just a side effect. its my fault i didn’t go though really. i’m sure…i assume…i hope… he would have taken me had i asked, had i said please take me i feel like i’m dying and when it started i was sure it was something big bad and i was terrified. my fault. i know this now. i just hate being a burden, i hate showing up at the ER so often with almost the same issues every time but i almost always only go because i was told to by a dr or nurse. as a result i avoid calling them because then i can say it must not have been bad enough so it would have been a waste of everyone’s time at the hospital where there are probably sicker and more important people in need than me.

i hate not breathing, the shortness of breath from the simplest task. i feel like i am drowning just trying to get myself situated in bed or with my blanket on the couch. it hurts. many people don’t quite realize this. it really hurts. if it is bad enough it feels like you are so short on air that you will pass out or just die. i’m not being dramatic. that is how it can feel when it is severe. my lungs would kill me in a zombie apocalypse before a zombie could get me. no joke. that is a good example.

so my heart is a bit bigger than usual. my fam dr is concerned because that sort of thing doesn’t generally happen in just a few months (since my last echo-cardiogram and several EKG’s since). i hope it is temporary and maybe just caused by the rapid heart rate i likely caused by drinking myself stupid while on a new med.

something is wrong with my liver, intestines or bones. i was supposed have a liver biopsy this morning but had to reschedule because my breathing is so bad. then i got a call yesterday about blood work showing possible intestinal issues, they wanna see if maybe i have celiac disease. fucking hell. i really don’t care about possibly having to cut wheat or whatever out of my diet. i’ll probably feel much better and lose weight. honestly after being told to get checked for this it makes even more sense than the liver issue. my stomach does occasionally hate me.

my mind is going.

no really, it is and it scares the ever living fuck out of me on top of being so damn frustrating and adding so much more guilt to my life. my memory loss is worse. i’m forgetting how to spell simple words. how could I, ME forget how to spell “vodka”? seriously. i’m often frazzled and confused trying to articulate myself, is that how you use that word? when i write i often forget how to write letters or end words so there is a lot of messy scribbles at the end of things. it is really fucking bad. it is possible that it could be an ADD/ADHD issue which is common with bipolar disorder. i hope that it is if that can be managed somehow. i have lost so much of my mind already, will this continue? joking about ending up like the wife in The Notebook is one thing, having it feel like that is actually happening before the age of 40 is no fucking joke.

so i was distracted, happily so and am back to finish this post.

everything and everyone is waking up and maybe i’m a bit manic still and that is making me flustered, maybe i just have more to deal with than i realized. i need to call the pharmacy and get access to my meds history if possible. i need to know what i was taking during certain times of my life the past 12 years or so. i also hate never being sure why i stopped a med or how long i took or if i even actually did. it is so frustrating because my psych is running out of options.


wow i give up.

i started this post at like 4 or 5 ayem, it is now almost noon.

have good moms day to the moms and anyone being a mom by choice.

have a good weekend kids.