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Monday, January 21, 2013

one in a million

it's becoming more of a daily struggle... trying to find things to live for. trying to keep myself from crying. trying to keep myself alive inside.

no. i wouldn't kill myself.

but seriously... some days i have to wonder... what exactly do i have to live for?

for those of us living with a chronic illness... life can suck.i really don't know how more of us haven't ended our own lives. or maybe more of us have, it's just not reported.

wanna know what i've been doing? what i've been up to? nothing. a whole lotta nothing. i've been on my couch. watching tv. sleeping. or i've been in my bed. sleeping. i've been in pain. headaches. nausea. and sleeping. i sit around and count the hours until i can go back to sleep, when normal people sleep. the days i feel good enough to do things... i can't do anything. my friends work. i can't work. i'm not healthy enough to work. so what exactly can i do...

i have a book. and i've been reading it, but i can't even find the motivation to do that. i don't even have the motivation to watch tv. how sad is that?

maybe it's because my cortisol is lowering, that i'm so fatigued all the time. today i took a 3 hour nap, only 2 1/2 hours after i woke up. i didn't sleep well last night. i had some seriously messed up dreams and i was in alot of pain before i went to sleep, but did i take any pain killers? nope. i tried to stick to just tylenol because mom and i were going to try and see a movie today. but that didn't happen. we were both feeling like garbage so we just watched the inauguration stuff, which was fabulous btw. i'm glad i voted for him. anyway... yeah. idk if it's my cortisol lowering or what's going on. i left a message with the staff at jeff because i want my surgery bunped up. i can't take this pain anymore. i'm over it. waiting until feb 19th just doesn't seem feasible to me. my pre-op testing is feb 4th, so i'm thinking that they can take me sooner. the surgical scheduler is supposed to be calling me back, she was supposed to call me today, but i'm sure she'll call me tomorrow, probably bright and early, which is fine, so i'll just have to make sure there's a notebook next to my bed.

i've been waking up randomly angry... and sad. or... frustrated. i've been reliving the nightmare that was chris and the horrible things he put me through. why? who the hell knows.

and then i'll have these negative thoughts in my head as to what could go wrong in my life now. not healthwise, but peoplewise. it's kinda like, why would he want anything to do with a sick girl? or he's not gonna stick around. or you know... all the thoughts that chris and anthony and jay had put into my head. or hell, even my friends and family had put into my head. why am i listening to those thoughts? who knows.  i'm probably just looking for anything to go wrong right now. right? because when i'm sad... everything is bad.

everything. everything. and i know that it's not everything. but it feels like everything. it feels like there's something wrong with everything.

first my doctor tells me that i'm going to need an adrenalectomy in july. so i freak out. get upset. calm down and become ok with this decision. and then i email him so we can schedule this, and then things change and we're going to run more tests, to make sure that i have active cushings. oy. so ok. which is a good thing. so in may, i'll be doing another 24 hr ufc to see what those results are and possibly a salivary test. and we'll go from there. i already told him that i wouldn't have surgery before july because i have a wedding to go to and i'm not missing that. i'm not letting this disease destroy my life anymore than it already has, even though it has a nice grip on me and seems to be pulling me down...  but an adrenalectomy... that would cure me. that would stop the cortisol from producing, i'd lose weight, i wouldn't be so tired, my mind wouldn't be so foggy, the headaches would become less frequent... but i'd also be on a steroid for the rest of my life. i'd also be at risk for nelson's syndome, which means i could develop a pseudotumor in the pituitary, but i'm at extremely low risk for that since i have no pituitary gland and i've undergone so much radiation. my neurosurgeon doesn't see why i would need the adrenalectomy since my cortisol is down so much. he's hoping that my numbers just continue to decrease. i think i'm hoping for that, too. but, if i need to have the surgery, i need to have the surgery. i'd rather have liposuction, if i don't need an adrenalectomy. and i will. i'm sick of not fitting into clothes. i'd really like to be able to wear jeans. cushings really fucked up my body. yes, i'm pretty. i understand that, but i miss wearing jeans. my body is deformed. i'm sick of either wearing sweats or dresses all the damn time.

i'm sick of being sick. i'm sick of biting back these damn tears. i'm tired of hearing, hang in there kiddo. we're gonna figure this out. how bout you figure it out now. how bout that.

you have no idea what i deal with on a daily basis. what any of us, who are fighting to stay alive, are dealing with. don't tell me to hang in there, because you're not hanging in there with me. are you? no. some days i feel like hanging in there with a damn noose.

it's lonely being a cush, being one in a million... i'd love to be healthy enough to be at work and bitch about my job and how it sucks. but i can't. i can't do half of the stuff you're doing and it blows. i thought i was getting better. i really did. oh wait, maybe i am getting better. no one seems to know. no matter how much research i do on this disease, i'm left with more questions because it's so rare.

yay for being one in a million...

1 comment:

  1. Hey there Nicci..hmmm...well...i wear leggings. I haven't worn jeans or fitted pants in 2 years. Stupid jeans. I can't stand them touching my skin. I tried them again this winter, but nope, that didn't work, i took them off with lightning speed. Yep, im a leggings girl now. Not that i'm upset about it, i really liked them in the late eighties, when I had a muscular build. But now, i wear them out of necesssity. I'm sure all the lumps and bumps that I rock now, could probably be camouflaged with something else, but all i can stand are leggings. The bad thing about leggings during the winter, you probably guessed it, the stinking cold. I've luckily found a brand of tights that i wear with the leggings that are incredibly comfey. As for summer, i havent worn shorts in a couple summers. My wardrobe is capri leggings and many sundresses. I haven't had to worry about an uncomfortable zipper in forever. That's an odd thought. None of my pants have zippers. HA! What the hell.

    "One in a million"...WOW. To me, that phrase used to initially implicate something FORTUNATE WITH A PLEASANT UNIQUENESS. Hm. My interpretation of that phrase will forever be altered to something that is UNIQUE. i am enlightened.