when you have a smile that lights up a room, people tend to always think the best of you. and i won't lie, i've got that smile. don't deny it, you've noticed that about me. it's one of my best features. actually, i think it's kinda gotten to be one of my worst...
i smile through everything. every blood draw. every iv.damnevery question unanswered. every diagnosis. every broken bone.
and it stems back further than cushings.
every heartbreak.
every liar
every abusive boyfriend
i smiled. i took it. i smiled.
i dealt with the hurt.
even now. well, maybe not NOW. but, recently. i've been smiling through all of it. and you're all so... WOWed by me. so, enamored by it all. so... Nicci's so strong. Nicci's such an inspiration. Nicci's so this, Nicci's so that. How DOES she do it?
damned if i know.
and then... i go silent for a while. have you heard from nicci? i wonder how nicci's doing. is nicci ok?
go on. talk ABOUT me all you want. but ask ME how i'm doing? now why the HELL would you bother to do that? really? oh that's right. because i'm strong so i MUST be ok.
NEWSFLASH. I'M NOT OFUCKINGKAY!!!
not at all. not in the least bit.
wanna know why i've gone silent? because... well... i've been drowning. i've been starving for air. i haven't been able to swim. i haven't had a life-preserver. my boat flipped over.
my friend said to me, why now? you've been struggling and endured for so long...
maybe that's the problem. two years is a long time to struggle and endure and to not really be getting anywhere. maybe i'm sick of being sick. or i'm sick of feeling like i'm being left in the dust. like i'm at a standstill and the world is moving on around me and i can't really go anywhere. my plane is circling and it just won't land. or maybe i feel like a failure. or that i will fail. i'm tired of being in pain. i've come to grips with my own mortality. i know that i could die. i know that this thing could kill me. i know this. i also know that i could end my own life. i know this. i've those thoughts have been eating away at my brain. EATING AWAY at it. but there's no guarantee that if i attempted it, that i would succeed and i wouldn't want to fail at that, too.
there's so much going on inside. so much that people don't know. so much that people don't seem to care to know because they don't ask!
no, you're right. i'm not going to tell you everything. but seriously, i'm sick. so ask me if i'm ok. don't assume that i'm fine because i smile. or because i'm strong. or because i've been so strong for so long.
i sit here and cry. and i ask YOU if you're ok. i sit here and i read on fb about your struggles and i ask if you're ok. or i read your blogs or i reach out. oh wait, i forgot, i'm the person that actually gives a shit. i don't know how to be a fairweather friend.
but let me tell you something about this past week. it's been the lowest of the low for me. i've never cried so much or hurt so much or just wanted it all to end. and randomly... people were reaching out to me. people who didn't know what was going on, people who i didn't really speak to, i heard from. and it was strange. and it really weirded me out. but i was touched by it. there was my lissa who just makes all the difference all the time and i don't think she realizes how much a difference she makes in my life. she's one of the most wonderful, most beautiful people i know and she is just... perfect. i save her text messages because they mean so much to me. i like to reread them, and usually they make me laugh. i got a nondrunk drunk dial from jen, just to tell me she loves me and was thinking about me. and then, there was the phone call yesterday. from my michael. now, i watched it ring, mainly because i love the picture that shows up (it's of him and i at his sister's wedding and we look fantastic) and the ringtone rocks= make it out alive by hanson. i can't handle talking to people on the phone because i just cry, i was out walking with my mom and sister and i didn't know why he was calling me. so listen to the vmail, and i was so touched, i cried. i had posted a picture on fb that said, when you're strong, no one asks if you're ok. my friend lori commented on it and asked if i was ok, i said no. and he called me. to see if i was ok. to let me know that he was here for me, to tell me that he doesn't talk on the phone (like me, i'd rather text anyday) and that he would be around his phone all night for me, so i would have someone and that i wasn't alone. seriously? who does that?
my heart soared. and pieced back together a little bit. now, i do have my amazing circle of friends who don't leave my side. but i've been so low i haven't been able to find joy in anything. and i mean in ANYTHING. i haven't cared about people, tv shows... nothing. i didn't even want to see my kidlets. and when that happened, i cried so hard because i love them to pieces.
maybe the sun is going to start shining. maybe. today i left my house. on my own. i ran errands without relying on someone else. i got my nails done. i didn't sleep the day away. yeah, i've been sleeping 16-18 hours a day. why? because that's all i've felt worth doing. i've felt completely worthless. and i know that i don't need people to make me feel like i'm worth something, i should be able to feel worth it on my own, but when you feel as low as i have, when your life takes a turn for the worst, when you're constantly faced with your own mortality and you feel forgotten about... yeah. it's easy to feel worthless.
and a smile? can hide a thousand lies.
so don't assume that i'm ok just because i'm strong. i may not be as strong as you think. or maybe i am, but it's dark. and scary. and this smile... try and see beyond it. because you're letting me down. and i'm drowning.
Tuesday, March 12, 2013
Friday, March 8, 2013
you left me for dead.
this shall be a venomous blog. so stop reading.
you left me for dead.
you saw me drowning. gasping for air and just let me go.
i reached out to you. held out my hand and you pushed me farther down into the abyss.
it's like i'm only good enough when i'm smiling, or when i'm healthy or when i'm ok. but godforbid i'm not ok...
and you KNEW i was having surgery and where were you? and i had TWO SURGERIES! i had to have an emergency second one because idk what happened but i couldn't stop bleeding from the first one and where were you? NOWHERE!!!
fairweather friends. you fuckin left me for dead.
or have we forgotten i have what's called, 'the silent killer'.
or have you just forgotten about me altogether?
and you... you guys are supposed to be my FAMILY. FAMILY. right. i don't even think you know what that word fucking means. because honestly? i have a girl here, who's not even close to being blood related to me, but she's more family to me than you will ever be. family my ass. i'm worthless? ha. if i recall correctly, i was there for you no matter what you needed, no matter what time of day it was, but wait, cole's getting sicker so let's ignore her cries. let's leave her for dead. because we're selfish fucking pricks.
and you know what? i don't care how much my words are going to be offending anyone. do you have ANY idea how much you've been hurting me?! ANY IDEA?!
i'm only good enough when i'm healthy. well fuck you. seriously. FUCK YOU. you know i'm sick. why is it my job to call you to say, hey. i'm fucking sick as hell and i'm miserable. can you ask me how i'm doing? how assbackward is that?
don't get me wrong, everyone has their own lives, i get that, but if i'm reaching out to you, WHILE I'M SICK, you could at least reach back. or not. because apparently i don't matter.
and YOU. YOU are the biggest fucking prick of them all! oh i love nicci. she's my best friend. i care about her so much. she does so much for me. she's always there for me. blah fucking blah. you're damn right nicci does so much for you. correction. she DID so much for you and where the fuck are you now superman? waste of 10 years of my fucking life. everything i did for you. my god. could you have at least tried to be there while i was scared to death? could you have been there holding my hand? could have been there encouraging me the same way i did for you all those years? oh wait, i'm sorry. it's not about you so why fucking bother. asshole.
go on. leave me for dead. alot of you are so goddamn good at it. selfish pricks.
i told you this was going to be venomous.
you have NO idea what i'm going through right now.
do you have ANY idea how scary that second surgery was? i couldn't stop bleeding so i had to RUSH to the TJH ER... RUSH 3 hours to an er... and we even had to pull off the tpk because i ran out of gauze pads! i had JUST been to the dr the day before and he cotorized me and said i was fine. welp, guess not! i was scared shitless! i already have a rare blood disorder, i have cushing's disease, was i dying? was the surgery not a success? what was going to happen to me now? yes, i was surrounded by an amazing medical staff and hott doctors, but still. i was scared. i had my dad with me, and my owl and an amazing person texting me until i made him go to bed bc he didn't want me to be alone. but i was scared.
but in the hospitals i feel safest because there someone can treat me. there someone knows my condition. there someone is gonna be able to fix me. the only reason i made them send me home is bc i didn't want my parents going broke by staying in a hotel. tjh is great but my dad couldn't stay in the room with me bc they are so small.
i had a few people texting me and my mom checking on me. and that doesn't go unappreciated. but there are still those who've left me for dead. and i shouldn't be mad at you. but i am. i think you are craptastic human beings.
seriously. i'm a great person. and if you don't see that, fuck yourself. i shouldn't let this bother me as much as it does, but it does.
i guess because i'd never let you drown. hell, no matter how much my ship has sunk, i've still reached out to you. because i'm not a shitbrick and i'd never let you die.
but that's ok. just let me die. but do me a favor, don't show up at my funeral. i don't want you there.
you left me for dead.
you saw me drowning. gasping for air and just let me go.
i reached out to you. held out my hand and you pushed me farther down into the abyss.
it's like i'm only good enough when i'm smiling, or when i'm healthy or when i'm ok. but godforbid i'm not ok...
and you KNEW i was having surgery and where were you? and i had TWO SURGERIES! i had to have an emergency second one because idk what happened but i couldn't stop bleeding from the first one and where were you? NOWHERE!!!
fairweather friends. you fuckin left me for dead.
or have we forgotten i have what's called, 'the silent killer'.
or have you just forgotten about me altogether?
and you... you guys are supposed to be my FAMILY. FAMILY. right. i don't even think you know what that word fucking means. because honestly? i have a girl here, who's not even close to being blood related to me, but she's more family to me than you will ever be. family my ass. i'm worthless? ha. if i recall correctly, i was there for you no matter what you needed, no matter what time of day it was, but wait, cole's getting sicker so let's ignore her cries. let's leave her for dead. because we're selfish fucking pricks.
and you know what? i don't care how much my words are going to be offending anyone. do you have ANY idea how much you've been hurting me?! ANY IDEA?!
i'm only good enough when i'm healthy. well fuck you. seriously. FUCK YOU. you know i'm sick. why is it my job to call you to say, hey. i'm fucking sick as hell and i'm miserable. can you ask me how i'm doing? how assbackward is that?
don't get me wrong, everyone has their own lives, i get that, but if i'm reaching out to you, WHILE I'M SICK, you could at least reach back. or not. because apparently i don't matter.
and YOU. YOU are the biggest fucking prick of them all! oh i love nicci. she's my best friend. i care about her so much. she does so much for me. she's always there for me. blah fucking blah. you're damn right nicci does so much for you. correction. she DID so much for you and where the fuck are you now superman? waste of 10 years of my fucking life. everything i did for you. my god. could you have at least tried to be there while i was scared to death? could you have been there holding my hand? could have been there encouraging me the same way i did for you all those years? oh wait, i'm sorry. it's not about you so why fucking bother. asshole.
go on. leave me for dead. alot of you are so goddamn good at it. selfish pricks.
i told you this was going to be venomous.
you have NO idea what i'm going through right now.
do you have ANY idea how scary that second surgery was? i couldn't stop bleeding so i had to RUSH to the TJH ER... RUSH 3 hours to an er... and we even had to pull off the tpk because i ran out of gauze pads! i had JUST been to the dr the day before and he cotorized me and said i was fine. welp, guess not! i was scared shitless! i already have a rare blood disorder, i have cushing's disease, was i dying? was the surgery not a success? what was going to happen to me now? yes, i was surrounded by an amazing medical staff and hott doctors, but still. i was scared. i had my dad with me, and my owl and an amazing person texting me until i made him go to bed bc he didn't want me to be alone. but i was scared.
but in the hospitals i feel safest because there someone can treat me. there someone knows my condition. there someone is gonna be able to fix me. the only reason i made them send me home is bc i didn't want my parents going broke by staying in a hotel. tjh is great but my dad couldn't stay in the room with me bc they are so small.
i had a few people texting me and my mom checking on me. and that doesn't go unappreciated. but there are still those who've left me for dead. and i shouldn't be mad at you. but i am. i think you are craptastic human beings.
seriously. i'm a great person. and if you don't see that, fuck yourself. i shouldn't let this bother me as much as it does, but it does.
i guess because i'd never let you drown. hell, no matter how much my ship has sunk, i've still reached out to you. because i'm not a shitbrick and i'd never let you die.
but that's ok. just let me die. but do me a favor, don't show up at my funeral. i don't want you there.
Friday, February 8, 2013
kinda freaking out.
so... surgery on tuesday...
apparently i'm not as excited about this as i thought i was, or as strong as i thought...
monday i went for my pre-admission testing. no big deal, right? just go to tjh, do the bloodwork, answer the questions, pee in the cup, do the catscan, just like before... just like before. just. like. before... and that's what it was. it was just like before. the same room. the same tests. the same hospital. the same doctor. all of a sudden it was april 2011 all over again and i was prepping for brain surgery. i was scared. i was angry. i was frustrated. i didn't want to be there. what if they found something else? what if something went wrong? and then there's the... everyone's gonna leave. no one's gonna stick around. i'm not going to have friends who are there for me when i come out of this. they all left me before, why would they stick around now?
but it's not april 2011, is it. and i'm not having brain surgery. i'm having sinus surgery. i'm having septoplasty turbinectomy endoscopic sinus surgery. that's what i'm having done. i'm having something that should be a simple procedure, so simple in fact, that i don't even need to stay overnight! so why... why am i freaking out? i am surrounded by people who love me and care about me. people who won't leave me alone... but my past... oh that past and those awful people have left such doubt in my head that i can't help but think that maybe... just maybe... something may go wrong.
i've been crying every day since i came home from those tests. every day. and alot. monday i cried so hard i was hyperventilating, in my bed, under the covers with my teddy bear. it was bad. i don't take my anxiety medication because it's as needed. i haven't needed it in i don't even know how long... but i took it that night. and i took it on tuesday. and wednesday. and thursday. and i plan on taking it every night until my surgery. something's gonna have to get me through it. they're probably going to have to give me ativan the morning of my surgery just to get me through it. and i'm ok with that.
we were going to stay in a hotel the night before so we'd be closer to the hospital, but instead we're driving up the morning of. i'd rather sleep in my own bed. i think i'll be less anxious, use my own shower, sleep in the car on the way up. it'll be better, and cheaper that way. we're staying in a hotel the night of the surgery though.
i actually opened up to a few people about how i'm feeling. well, three people. but three is better than none. well, four if you include my mom. i told my twin, the biffster and the boy. and all have reassured me that they don't plan on leaving my side. and ya know something? i believe them.
i'm still freaking out. alot. but not as much as i was. i started painting again. that felt really good. it feels good to be doing something for other people and to be focusing my attention on other things. painting is just so... calming. and beautiful and just nice. i make some pretty cute things, too. :) maybe tomorrow i'll paint some more, make some faerie houses, some bracelets... since date night has moved to sunday because of this damn weather... oh well.
so yes. i'm scared. and i'm trying to hold it together. and i haven't wanted to but... i let some people in and i'm letting them help me hold it together. and ya know what? it makes it not so scary...
apparently i'm not as excited about this as i thought i was, or as strong as i thought...
monday i went for my pre-admission testing. no big deal, right? just go to tjh, do the bloodwork, answer the questions, pee in the cup, do the catscan, just like before... just like before. just. like. before... and that's what it was. it was just like before. the same room. the same tests. the same hospital. the same doctor. all of a sudden it was april 2011 all over again and i was prepping for brain surgery. i was scared. i was angry. i was frustrated. i didn't want to be there. what if they found something else? what if something went wrong? and then there's the... everyone's gonna leave. no one's gonna stick around. i'm not going to have friends who are there for me when i come out of this. they all left me before, why would they stick around now?
but it's not april 2011, is it. and i'm not having brain surgery. i'm having sinus surgery. i'm having septoplasty turbinectomy endoscopic sinus surgery. that's what i'm having done. i'm having something that should be a simple procedure, so simple in fact, that i don't even need to stay overnight! so why... why am i freaking out? i am surrounded by people who love me and care about me. people who won't leave me alone... but my past... oh that past and those awful people have left such doubt in my head that i can't help but think that maybe... just maybe... something may go wrong.
i've been crying every day since i came home from those tests. every day. and alot. monday i cried so hard i was hyperventilating, in my bed, under the covers with my teddy bear. it was bad. i don't take my anxiety medication because it's as needed. i haven't needed it in i don't even know how long... but i took it that night. and i took it on tuesday. and wednesday. and thursday. and i plan on taking it every night until my surgery. something's gonna have to get me through it. they're probably going to have to give me ativan the morning of my surgery just to get me through it. and i'm ok with that.
we were going to stay in a hotel the night before so we'd be closer to the hospital, but instead we're driving up the morning of. i'd rather sleep in my own bed. i think i'll be less anxious, use my own shower, sleep in the car on the way up. it'll be better, and cheaper that way. we're staying in a hotel the night of the surgery though.
i actually opened up to a few people about how i'm feeling. well, three people. but three is better than none. well, four if you include my mom. i told my twin, the biffster and the boy. and all have reassured me that they don't plan on leaving my side. and ya know something? i believe them.
i'm still freaking out. alot. but not as much as i was. i started painting again. that felt really good. it feels good to be doing something for other people and to be focusing my attention on other things. painting is just so... calming. and beautiful and just nice. i make some pretty cute things, too. :) maybe tomorrow i'll paint some more, make some faerie houses, some bracelets... since date night has moved to sunday because of this damn weather... oh well.
so yes. i'm scared. and i'm trying to hold it together. and i haven't wanted to but... i let some people in and i'm letting them help me hold it together. and ya know what? it makes it not so scary...
Wednesday, January 30, 2013
i'm a suicide survivor :)
i think the title speaks for itself.
WARNING. DO NOT READ IF YOU DON'T THINK YOU CAN HANDLE WHAT FOLLOWS.
i am a suicide survivor.
i think the first time i contemplated ending my own life, i was in the 5th grade. 5TH GRADE! what would that have made me, 10 years old... TEN FREAKIN YEARS OLD!!!! that's how ridiculed i was. that's how terrible kids made me feel. i remember going home, looking in my mirror and saying to myself, you're fat, you're ugly, nobody likes you, you have no friends, everybody hates you, go kill yourself. TEN YEARS OLD! what on earth... lardy velardi they called me. wait, YOU called me that. YOU did that. do you remember? i don't know if YOU specifically did that, because i don't know if my readers are my previous bullies, but i also remember my bullies also telling me to go kill myself. and i would tell myself that i was better off dead... at TEN YEARS OLD!! and i thought about it. i'd look at my deck, i'd walk out on it. climb the rungs, and contemplate jumping off and just ending it all. why not? what did i have to lose? no one would miss me. i had no friends. no one cared about me. i was fat. i was ugly. i was constantly getting picked on. i wasn't a popular kid by any means. i was the tallest girl in the class, every year. i had stains on my teeth. i believed in God. i listened to country music. i stood firm in my beliefs. i didn't have the same friends that everyone else did. i was awkward. the ridicule didn't start in 5th grade, it started, i think, in 3rd or 4th, but was the worst in 5th. that's when i heard, why don't you go kill yourself.
we had a gun safety course in 5th grade. we learned about guns. i learned about guns. i knew we had guns. i remember asking my dad where they were. where he kept them. i also remember asking where he kept the bullets. i told him that in class i learned that to promote gun safety the bullets and guns should be kept in different places and that there should never be a loaded gun in the house. he, trusting his baby girl, showed me where everything was, and taught me that we did not keep loaded guns in the house. i wasn't just asking him these questions because of what i learned in class, i was asking because well... they trusted me and sometimes i was home alone and well... do i have to spell it out for you? who was really going to care? right?
well, somehow i managed to become cared about. my dear friend mana cared about me. she laughed at my taste in music, but loved me no matter what. her mom always welcomed me into their home. she played with me on the playground, and she was picked on, too. i don't know the extent of it, but, she loved me. she still does. she's one of the best people i know and some days i don't know how i survive without her. she's a big part of how i survived back then.
i also have an amazing family who loves me. that's also a reason that i'm still here. a reason that i didn't find my way to my daddy's guns. i didn't swallow pills because i couldn't swallow pills at that time and, well, i was ten years old, it would get better, wouldn't it?
in 6th grade i was thrown into a new school, with new people and was away from the people who ripped me apart. i was still awkward, but i was around new people and people weren't so mean.
in 7th grade i found my niche. i found a group of people as awkward and weird as i were and we became attached. it was lovely. we laughed. we we were in band. we had similar disinterests. we got made fun of, but were made fun of together, and that made it all ok. i met my soulsister. we looked pretty identical. we were both amazons and could share clothing. she was all misery and darkness and i was all peaches and sunshine. we were the perfect pair. we are the perfect pair. she completes me and gets me through my days. she knows when i'm sad without speaking to me and is an incredible part of my family and i don't know what i'd do without her. i lost her for a few years, but she's back and it's wonderful. but yes, in 7th grade it was great.
so it had seemed my sadness had ended. i was going to be alright.
and then... high school happened. and it all fell apart. i joined marching band. where i became a disgrace. too tall. too fat. too slow. too awkward. too unbalanced. too unpretty. no one liked me. i wasn't good enough. i didn't fit in with the freshman. i didn't fit in with the upperclassmen. i was a joke. everyone made fun of me. it was 5th grade all over again. i was ten years old, all over again. and no one seemed to care. my band director made my life hell, and making me cry, made him smile. i'd go back to my mirror and yell at myself. i became withdrawn. who in their right mind would want to spend time with me? i tried to be happy. to get lost in my writing. to continue some friendships. and i guess i put on a good act. but... i was dying inside. i climbed that deck again. i held a knife to my wrists more than once, i was too much of a scairdy cat to cut, though. but boy... was i tempted. i watched girls get boyfriends, and thought hmm... maybe that's what i need to be accepted. why the hell i thought that, who knows. i had never thought that way before, never really cared but... i had friends who felt that way and i had friends who talked shit behind my back, friends who talked down to me, and friends who made me feel like garbage. good friends, right? bring on the inner darkness...
10th grade i found amazing awkward people. people who wanted to save me. people who saw my inner struggle, the struggle i refused to talk about, but they saw it in my eyes. they held me without touching me and made me feel like i was worth something. we laughed. we cried. we were awkward together. i wrote, they drew. jenni and sarah were like my rocks. ROCKS. sarah caught me trying to end my life IN school. there was a stairwell in the middle of the building and as i was getting ready to climb the ledge, she stopped me. it was just the two of us and i believe God had sent her there to be my angel and stop me. i collapsed into her embrace. my wonderful boyfriend at the time, told me he wouldn't have cared if i lived or died so really... if that's what 'true love' was all about, then i wanted nothing to do with it... but sarah... she caught me, literally, in the nick of time. and i'll never forget that. jenni came to see me when i was in the hospital. she brought me a bunny from her and sarah, i call him jefferson rabbit and i sleep with him every night. everyone else sent a teddy bear but... the rabbit? he's perfect. unique and special, just like us. they helped save me.
junior and senior year were eh... junior year was rough, just not as bad. i wasn't in marching band so i only had a bad boyfriend. abusive. but hey. whatevs. it happened. you'd think i'd learn. but no.
senior year i joined the colorguard, where, i sucked. i fractured my ankle and busted my kneecap, was ridiculed for my firm belief in God but... i was a SENIOR so it was kinda like FUCK everyone else. and then i got kicked out of the youth group, where i held a leadership position because the cuntwhore NEW pastors daughter was making out with MY boyfriend and then i was told that because i chose to do my graduation project, ya know, so i could GRADUATE, i was putting the world before the Lord that I was no longer welcome. are you serious?! whatever. when the new pastor took over, it had slowly turned cultish, and i'm not even kidding. just about everyone left so... i'm not missing out. i actually like the way i worship now, a whole lot better. i think i thought about suicide once or twice my senior year...
let's bring on college, shall we? that was a bitch. freshman year i made a name for myself. i was involved in everything and i mean EVERYTHING. christian fellowship, student activities, i was chosen to be a part of the presidential advisory board, i worked in the office, worked another job, attended school functions, my picture was hung up around the office, did interviews, had a full-time boyfriend, worked at a summer camp... i was little miss go-getter. things were looking up for me. i mean, unless you include the stalker i had... yeah. i ended up learning how to use a knife. no. i didn't have to use it, but jason taught me how to use one and had me carry one because someone was following me and threatening and i read conversations where he had talked about wanting to rape me. i actually had someone walking to me to my car, and then the security guard was walking me to and from my classes. AND I WAS GOING TO A COMMUNITY COLLEGE!
and then there was the abortion. that was a rough one. yes. i had an abortion. it was hard to deal with. i know that i made the right decision. i don't regret it and you can say whatever you want. you can hate me for it, you can judge me for it, call me a babykiller, that's fine. you're entitled to your opinion. at that time, i struggled with it. did i want to kill myself for it? strangely enough, no. did i want to kill the guy... yes. a few months afterward i did struggle with it and hated myself for it. i just had a hard time with it. but, i'm prochoice and feel that unless you've been in that situation you can't say what you would do. so, you can either stop reading and hate me, or keep reading and don't judge me.
college was really rough for me. the abortion happened. then a bunch of my friends killed themselves... within weeks of each other... during my birthday month. i had a boyfriend who brought me into his rollercoaster of a family- he was abused as a child, his brother came home and beat the shit out of his girlfriends... i became a borderline alcoholic/sex addict...
then i had a boyfriend who consistently beat the shit out of me but i was too afraid to leave because i was afraid he would kill me. or himself. or both of us and i didn't know what the right thing to do would be. and while dating him, i fell in love with someone else. and i mean, love love. like the real deal. like the one i wanted to be with for the rest of my life. and he felt the same way but i was stuck... and then... he died. he DIED. my soulmate. i would have left that relationship for him. i should have left. he DIED. two days before my birthday. gone. he's gone. GONE. are you reading this. THE LOVE OF MY LIFE DIED. what reason would i have now to keep going? i might as well stay with douchebag. *sidenote, i know he's my guardian and he walks with me and protects me daily, so that's something to smile about ;)*
*insert that i met my OTHER soulmate, the female soulmate of mine (wifey) while in college, at ESU. she keeps me breathing. i hate that we live so far apart now. i miss her so much. a hug from her can cure any illness. she seems to know what i need just when i need it. during school, we fell in platonic love during one of our courses while putting together an event for school on domestic violence. 'silence the violence, increase the peace' she held my hand as i told my then boyfriends story about his abuse from his father. she's amazing and i'm so blessed to have her in my life. she keeps me afloat. and the days when i'm drowning, she surprises me and makes random trips to my state to see me*
and stay with douchebag i did. i started defending myself. i'd fight back. one time i hit him so hard i thought i broke his nose. the amount of blood that was on my living room floor... holy hannah banana! he'd hit me, i'd hit him back. one time, he called me a whore... well, he called me a whore one too many times that day, so, i scared him. i ripped my clothes off, took out his wallet and said. pay me motherfucker. yeah... really healthy right? i tried to drown myself that day. while living with him i tried mixing tylenol with tequila, drowning myself, i tried sitting in a running car, i tried driving my car off the road... nothing ever seemed to work. eventually... i just stopped coming home. i felt bad for him... you'd think i'd care more about me. but no. i'd had too many people tell me that i was so worthless and unimportant that... i still thought his life was more important than mine. so him throwing me across the room, throwing a cd player at me, having a coffee table land on me, having him try and snap my ankle or trying to crash my car with both of us in it because if he 'can't have me than no one can'.. i still felt sorry for him because no one wanted him around. so i had to save him, right? at my wifeys graduation party, someone noticed the bruises... at work my boss knew something was going on. he would stay late with me and find things for me to do. another supervisor knew that things were getting bad and would help me find reasons to work late. they helped me leave my relationship. i ended up getting my head together and moving back home. and i'm home. and i'm safe.
after that i hadn't battled with suicide. even with the shitbrick boyfriends i had. they never made me want to end my life. i hadn't struggled with suicide until i got here. until the cushing's. the depression gets so bad that i wonder how more of us haven't ended our own lives. i'll sink so deep into the darkness that sometimes i'll think, why am i still here? what is my purpose? i have no reason to wake up, to get out of bed. blah blah blah.
that's how sad i get. that's how bad the pain gets. some days i can't get out of bed, it's not that i don't want to, i physically can't do it.
but you know what? that's ok. i'm ok. i'm a survivor. one of the things that i've learned in therapy is that, it's ok to give into the darkness. let it take over you. it's not going to last forever.
and you know what? it's not. it hasn't. i've been blessed. maybe i'm here to uplift people. maybe i'm here to keep other people going.
i went out saturday night, and it was wonderful. i spent the night laughing and jumping around and being goofy and pretty with my twin. i think she needed it as much as i did. and she loved me being happy and i loved her being happy.
i make people happy. i bring light wherever i go. it's a part of me. i can't help it. :) i like letting my light shine. so you should let your light shine.
i'm a suicide survivor. and i'm going to keep on surviving. no matter how dark or how sad i get. it will always get better.
i hope you're surviving, too. or that maybe this saves you. because it will get better for you. no matter how old you are. i started surviving a little too early, if you ask me. bullying sucks.
i've also noticed that i'm alot happier now that i don't have negativity and pointless drama in my life. i've forgive those who've hurt me, i just don't have a place for them in my life anymore. and you don't have to let someone back into your life just because they've said that they're sorry. it's like giving them the bullets for that gun that they've already shot you with and honestly? i don't feel like bandaging that wound again...
anyway... in the dark is where the stars shine their brightest
the sun will come out tomorrow
and you are beautiful
so smile
and before you go to sleep
and every morning when you wake up
tell yourself: i am worthy of love. i am worth it. i am awesome. i am amazing. i deserve to love myself. i love myself. i am great!
because you are.
WARNING. DO NOT READ IF YOU DON'T THINK YOU CAN HANDLE WHAT FOLLOWS.
i am a suicide survivor.
i think the first time i contemplated ending my own life, i was in the 5th grade. 5TH GRADE! what would that have made me, 10 years old... TEN FREAKIN YEARS OLD!!!! that's how ridiculed i was. that's how terrible kids made me feel. i remember going home, looking in my mirror and saying to myself, you're fat, you're ugly, nobody likes you, you have no friends, everybody hates you, go kill yourself. TEN YEARS OLD! what on earth... lardy velardi they called me. wait, YOU called me that. YOU did that. do you remember? i don't know if YOU specifically did that, because i don't know if my readers are my previous bullies, but i also remember my bullies also telling me to go kill myself. and i would tell myself that i was better off dead... at TEN YEARS OLD!! and i thought about it. i'd look at my deck, i'd walk out on it. climb the rungs, and contemplate jumping off and just ending it all. why not? what did i have to lose? no one would miss me. i had no friends. no one cared about me. i was fat. i was ugly. i was constantly getting picked on. i wasn't a popular kid by any means. i was the tallest girl in the class, every year. i had stains on my teeth. i believed in God. i listened to country music. i stood firm in my beliefs. i didn't have the same friends that everyone else did. i was awkward. the ridicule didn't start in 5th grade, it started, i think, in 3rd or 4th, but was the worst in 5th. that's when i heard, why don't you go kill yourself.
we had a gun safety course in 5th grade. we learned about guns. i learned about guns. i knew we had guns. i remember asking my dad where they were. where he kept them. i also remember asking where he kept the bullets. i told him that in class i learned that to promote gun safety the bullets and guns should be kept in different places and that there should never be a loaded gun in the house. he, trusting his baby girl, showed me where everything was, and taught me that we did not keep loaded guns in the house. i wasn't just asking him these questions because of what i learned in class, i was asking because well... they trusted me and sometimes i was home alone and well... do i have to spell it out for you? who was really going to care? right?
well, somehow i managed to become cared about. my dear friend mana cared about me. she laughed at my taste in music, but loved me no matter what. her mom always welcomed me into their home. she played with me on the playground, and she was picked on, too. i don't know the extent of it, but, she loved me. she still does. she's one of the best people i know and some days i don't know how i survive without her. she's a big part of how i survived back then.
i also have an amazing family who loves me. that's also a reason that i'm still here. a reason that i didn't find my way to my daddy's guns. i didn't swallow pills because i couldn't swallow pills at that time and, well, i was ten years old, it would get better, wouldn't it?
in 6th grade i was thrown into a new school, with new people and was away from the people who ripped me apart. i was still awkward, but i was around new people and people weren't so mean.
in 7th grade i found my niche. i found a group of people as awkward and weird as i were and we became attached. it was lovely. we laughed. we we were in band. we had similar disinterests. we got made fun of, but were made fun of together, and that made it all ok. i met my soulsister. we looked pretty identical. we were both amazons and could share clothing. she was all misery and darkness and i was all peaches and sunshine. we were the perfect pair. we are the perfect pair. she completes me and gets me through my days. she knows when i'm sad without speaking to me and is an incredible part of my family and i don't know what i'd do without her. i lost her for a few years, but she's back and it's wonderful. but yes, in 7th grade it was great.
so it had seemed my sadness had ended. i was going to be alright.
and then... high school happened. and it all fell apart. i joined marching band. where i became a disgrace. too tall. too fat. too slow. too awkward. too unbalanced. too unpretty. no one liked me. i wasn't good enough. i didn't fit in with the freshman. i didn't fit in with the upperclassmen. i was a joke. everyone made fun of me. it was 5th grade all over again. i was ten years old, all over again. and no one seemed to care. my band director made my life hell, and making me cry, made him smile. i'd go back to my mirror and yell at myself. i became withdrawn. who in their right mind would want to spend time with me? i tried to be happy. to get lost in my writing. to continue some friendships. and i guess i put on a good act. but... i was dying inside. i climbed that deck again. i held a knife to my wrists more than once, i was too much of a scairdy cat to cut, though. but boy... was i tempted. i watched girls get boyfriends, and thought hmm... maybe that's what i need to be accepted. why the hell i thought that, who knows. i had never thought that way before, never really cared but... i had friends who felt that way and i had friends who talked shit behind my back, friends who talked down to me, and friends who made me feel like garbage. good friends, right? bring on the inner darkness...
10th grade i found amazing awkward people. people who wanted to save me. people who saw my inner struggle, the struggle i refused to talk about, but they saw it in my eyes. they held me without touching me and made me feel like i was worth something. we laughed. we cried. we were awkward together. i wrote, they drew. jenni and sarah were like my rocks. ROCKS. sarah caught me trying to end my life IN school. there was a stairwell in the middle of the building and as i was getting ready to climb the ledge, she stopped me. it was just the two of us and i believe God had sent her there to be my angel and stop me. i collapsed into her embrace. my wonderful boyfriend at the time, told me he wouldn't have cared if i lived or died so really... if that's what 'true love' was all about, then i wanted nothing to do with it... but sarah... she caught me, literally, in the nick of time. and i'll never forget that. jenni came to see me when i was in the hospital. she brought me a bunny from her and sarah, i call him jefferson rabbit and i sleep with him every night. everyone else sent a teddy bear but... the rabbit? he's perfect. unique and special, just like us. they helped save me.
junior and senior year were eh... junior year was rough, just not as bad. i wasn't in marching band so i only had a bad boyfriend. abusive. but hey. whatevs. it happened. you'd think i'd learn. but no.
senior year i joined the colorguard, where, i sucked. i fractured my ankle and busted my kneecap, was ridiculed for my firm belief in God but... i was a SENIOR so it was kinda like FUCK everyone else. and then i got kicked out of the youth group, where i held a leadership position because the cuntwhore NEW pastors daughter was making out with MY boyfriend and then i was told that because i chose to do my graduation project, ya know, so i could GRADUATE, i was putting the world before the Lord that I was no longer welcome. are you serious?! whatever. when the new pastor took over, it had slowly turned cultish, and i'm not even kidding. just about everyone left so... i'm not missing out. i actually like the way i worship now, a whole lot better. i think i thought about suicide once or twice my senior year...
let's bring on college, shall we? that was a bitch. freshman year i made a name for myself. i was involved in everything and i mean EVERYTHING. christian fellowship, student activities, i was chosen to be a part of the presidential advisory board, i worked in the office, worked another job, attended school functions, my picture was hung up around the office, did interviews, had a full-time boyfriend, worked at a summer camp... i was little miss go-getter. things were looking up for me. i mean, unless you include the stalker i had... yeah. i ended up learning how to use a knife. no. i didn't have to use it, but jason taught me how to use one and had me carry one because someone was following me and threatening and i read conversations where he had talked about wanting to rape me. i actually had someone walking to me to my car, and then the security guard was walking me to and from my classes. AND I WAS GOING TO A COMMUNITY COLLEGE!
and then there was the abortion. that was a rough one. yes. i had an abortion. it was hard to deal with. i know that i made the right decision. i don't regret it and you can say whatever you want. you can hate me for it, you can judge me for it, call me a babykiller, that's fine. you're entitled to your opinion. at that time, i struggled with it. did i want to kill myself for it? strangely enough, no. did i want to kill the guy... yes. a few months afterward i did struggle with it and hated myself for it. i just had a hard time with it. but, i'm prochoice and feel that unless you've been in that situation you can't say what you would do. so, you can either stop reading and hate me, or keep reading and don't judge me.
college was really rough for me. the abortion happened. then a bunch of my friends killed themselves... within weeks of each other... during my birthday month. i had a boyfriend who brought me into his rollercoaster of a family- he was abused as a child, his brother came home and beat the shit out of his girlfriends... i became a borderline alcoholic/sex addict...
then i had a boyfriend who consistently beat the shit out of me but i was too afraid to leave because i was afraid he would kill me. or himself. or both of us and i didn't know what the right thing to do would be. and while dating him, i fell in love with someone else. and i mean, love love. like the real deal. like the one i wanted to be with for the rest of my life. and he felt the same way but i was stuck... and then... he died. he DIED. my soulmate. i would have left that relationship for him. i should have left. he DIED. two days before my birthday. gone. he's gone. GONE. are you reading this. THE LOVE OF MY LIFE DIED. what reason would i have now to keep going? i might as well stay with douchebag. *sidenote, i know he's my guardian and he walks with me and protects me daily, so that's something to smile about ;)*
*insert that i met my OTHER soulmate, the female soulmate of mine (wifey) while in college, at ESU. she keeps me breathing. i hate that we live so far apart now. i miss her so much. a hug from her can cure any illness. she seems to know what i need just when i need it. during school, we fell in platonic love during one of our courses while putting together an event for school on domestic violence. 'silence the violence, increase the peace' she held my hand as i told my then boyfriends story about his abuse from his father. she's amazing and i'm so blessed to have her in my life. she keeps me afloat. and the days when i'm drowning, she surprises me and makes random trips to my state to see me*
and stay with douchebag i did. i started defending myself. i'd fight back. one time i hit him so hard i thought i broke his nose. the amount of blood that was on my living room floor... holy hannah banana! he'd hit me, i'd hit him back. one time, he called me a whore... well, he called me a whore one too many times that day, so, i scared him. i ripped my clothes off, took out his wallet and said. pay me motherfucker. yeah... really healthy right? i tried to drown myself that day. while living with him i tried mixing tylenol with tequila, drowning myself, i tried sitting in a running car, i tried driving my car off the road... nothing ever seemed to work. eventually... i just stopped coming home. i felt bad for him... you'd think i'd care more about me. but no. i'd had too many people tell me that i was so worthless and unimportant that... i still thought his life was more important than mine. so him throwing me across the room, throwing a cd player at me, having a coffee table land on me, having him try and snap my ankle or trying to crash my car with both of us in it because if he 'can't have me than no one can'.. i still felt sorry for him because no one wanted him around. so i had to save him, right? at my wifeys graduation party, someone noticed the bruises... at work my boss knew something was going on. he would stay late with me and find things for me to do. another supervisor knew that things were getting bad and would help me find reasons to work late. they helped me leave my relationship. i ended up getting my head together and moving back home. and i'm home. and i'm safe.
after that i hadn't battled with suicide. even with the shitbrick boyfriends i had. they never made me want to end my life. i hadn't struggled with suicide until i got here. until the cushing's. the depression gets so bad that i wonder how more of us haven't ended our own lives. i'll sink so deep into the darkness that sometimes i'll think, why am i still here? what is my purpose? i have no reason to wake up, to get out of bed. blah blah blah.
that's how sad i get. that's how bad the pain gets. some days i can't get out of bed, it's not that i don't want to, i physically can't do it.
but you know what? that's ok. i'm ok. i'm a survivor. one of the things that i've learned in therapy is that, it's ok to give into the darkness. let it take over you. it's not going to last forever.
and you know what? it's not. it hasn't. i've been blessed. maybe i'm here to uplift people. maybe i'm here to keep other people going.
i went out saturday night, and it was wonderful. i spent the night laughing and jumping around and being goofy and pretty with my twin. i think she needed it as much as i did. and she loved me being happy and i loved her being happy.
i make people happy. i bring light wherever i go. it's a part of me. i can't help it. :) i like letting my light shine. so you should let your light shine.
i'm a suicide survivor. and i'm going to keep on surviving. no matter how dark or how sad i get. it will always get better.
i hope you're surviving, too. or that maybe this saves you. because it will get better for you. no matter how old you are. i started surviving a little too early, if you ask me. bullying sucks.
i've also noticed that i'm alot happier now that i don't have negativity and pointless drama in my life. i've forgive those who've hurt me, i just don't have a place for them in my life anymore. and you don't have to let someone back into your life just because they've said that they're sorry. it's like giving them the bullets for that gun that they've already shot you with and honestly? i don't feel like bandaging that wound again...
anyway... in the dark is where the stars shine their brightest
the sun will come out tomorrow
and you are beautiful
so smile
and before you go to sleep
and every morning when you wake up
tell yourself: i am worthy of love. i am worth it. i am awesome. i am amazing. i deserve to love myself. i love myself. i am great!
because you are.
Friday, January 25, 2013
my story
you've got questions, i've got answers...
a
how did you know something was wrong? when i noticed the weight gain and the hump on the back of my neck back in 2008, my doctor told me that i was fat and that i needed plastic surgery to help me. really doc? plastic surgery? and i'm a healthy person. i was working out 2 hours a day, eating salads and yogurt, limiting my alcohol intake, everything. but... nothing was working. i was fat and needed plastic surgery, her words EXACTLY. i was tired alot, and started experiencing depression and insomnia... but i kinda blamed that on my job as a CPS (child protective services) worker, dating a real piece of crapola, and having a busy lifestyle- i was going out all the time- dancing, the shore, the bar, working a SECOND job, spending oodles of time with mister crapola... i didn't FEEL sick, didn't LOOK sick, so i didn't think anything was wrong... i was just fat, right? but then... then in 2010 i was starting to get more depressed and forgetful, i was blacking out, which was really scary. i wouldn't know who or what things were and how i was ending up places... that i think was the worst. and people were starting to think i was crazy... hell, i was starting to think i was crazy. especially when i went to the hospital after one of my big black outs and they told me that nothing was wrong... good job misreading my catscan assholes. that was may 2010. in june 2010, just about a week later, i blacked out, fell down the steps, fell through my front door and fell down those steps. my brother took me to the emergency room where they misread that xray, i fucking hate that hospital, which is why i drive an hour for my er visits now. but anyway, i ended up breaking my foot. so, a few weeks into my break, i see a foot dr who diagnosed that break. and in july i start having crazy bad leg pain. guess who has blood clots? that's right... this girl! and then i had chest pain, so then i had to go to the bad hospital, where they actually got something right and found i had blood clots in my lungs. so i was hospitalized for a week. after i got out of the hospital, i was home for about a week when the horrible headaches kicked in, so to ensure that i didn't have clotting in my brain, i was rushed to have CT done... well, no clotting... just a brain tumor and brain atrophy... lovely. just lovely. and... this could have been caught in may... actually... could have been caught in 2008... because a hump on the back of the neck is a sign of a pituitary tumor. but whatever. can't go back in time, can we? nope. so... low and behold, something was definitely wrong, but i never felt sick. i was starting to feel sick to my stomach at this point... wouldn't you? i had emergency brain surgery in august, which left me blind in my right eye because the surgeon nicked my optic nerve, he did a crainiotmy because the tumor was so big. he said he got the whole thing, he lied. he left 50% of it in, causing it to GROW and wrap around my carotid artery. he sent me to his brother, and endocrinologist who kept telling me i couldn't have cushings because no one had cushings, that i was fat and needed to stop eating. are you fucking serious? and yet his brother, the brain surgeon, told me i had cushings. so who am i supposed to listen to?! the surgeon said i was having radiation. my eye specialist said no way and referred me to a different surgeon, who also referred me to a fabulous endo who i adore. and HE met with a TUMOR BOARD and they decided i needed ANOTHER surgery, a less invasive surgery, one that wouldn't put my vision at risk. so, boom. surgery number 2. april 2011. he got most of the tumor but said i'd need radiation because he couldn't get it all because of it being attached to my carotid and if he pulled it the wrong way i would have lost all facial movement and he didn't want to risk that. so july 2011 radiation. i was put on a cushings medication treatment. and i'd like to say that with the radiation worked. but, i don't freaking know. i lost some weight. but not enough to be convinced of anything.
how did you feel? when i heard the words: you have a brain tumor, i just bit my tongue. it was like, what else can go wrong? i felt like i had to be strong, i couldn't let anything else fall apart. i needed to power through it. i didn't cry until the doctor told me that he was going to shave my head. i was very upset about that. i had just gotten my hair cut and highlighted and i didn't want it to be ruined because of stupid brain surgery!
we didn't know much about anything so we trusted him when he said we didn't have much time to make a decision. it was like, ok, we gotta get this done. when i woke up blind i freaked out. actually, i was more worried about how my mom was going to take the news. i asked the nurses not to tell her until she came to the hospital. i didn't want her to freak out. but, godforbid anyone listen to me, they told her i was going for a CT so she knew something was wrong. i think i handled it pretty well, until i got home. then it was difficult for me because i didn't know what things were or where things were. i was forgetting things and bumping into things. i was irritated, frustrated, angry, sad, i felt alone... i still feel alone. i was humbled. i couldn't bathe myself, feed myself, it was annoying. it didn't last very long, though. i wasn't about to not shower in my own home. i got over that real quick. maybe it took me longer to heal because i pushed myself too hard, too fast but, shit had to get done and i wait for no one. i couldn't take it. i had a life to live!
i worked my ass off as physical therapy, too because i had a concert to go to and i wasn't going to sit there with my walker. i sat through lady antebellum with my cane. the pain was well worth it. i was in bed for a few days afterward, but i survived.
i felt like i was finally going to have answers. i dropped 35-40lbs after my first surgery. it was fantastic! and then, a few months later, out of nowhere, it came back. that was one of the signs that the tumor was growing... and it grew with a vengeance. so my happiness soon dissipated. i had one doctor telling me that i didn't have cushings, and then all the other signs are pointing to cushings, i was showing all the signs: fatigue, muscle aches, the thin skin, dizzy spells, the weight, the moon face, the round stomach, the cortisol levels, the headaches, the forgetfulness, the brain fog, the depression, the anxiety... so much more... but no. he didn't want to listen.
i didn't start feeling like i was getting somewhere until i found my second neurosurgeon, dr.m, and my second endo, dr.v, they are my godsends. they are heaven on earth. they listen. they find answers. they sit with me, they answer questions, they research. they don't brush me off. with dr.v i feel like a person, i feel like he cares, i feel like we're going to be getting somewhere.
how do you feel now? i honestly don't know what's going on with my body anymore. i'm up, i'm down. i'm sick, i'm not sick. i'm prone to infection. my immune system is shot. i'm tired. my muscles ache. i've been battling a sinus infection since november that i'm having surgery for in a few weeks, thank god. i think i'm the only person i know who looks forward to surgery... i'm depressed, i'm not depressed. some days i can hardly move. i'm actually starting to blame alot of this on the sinus infection- pain brings on depression according to the neurologist. but depression is also a part of cushings disease. i know this and i know that the sun will always rise again. :) it's ok to give in to the darkness, as long as i know it won't last forever, even though when it consumes me, sometimes it feels as though it will. that's how today, i know i'm starting to get better, because i can say that it's going to be ok.
i feel frustrated. i'd like to not be sick anymore. i'm sick of being sick. i'd like to be better. i'd like to have answers. i'd like to know what the hell is going on with me. i'd like there to be a freaking cure for all of us. i'd like to not be so tired. i'd like to not need a nap every day. i'd like to be healthy enough to work. i'd like alot of things. i'd like to not worry so many people. i'd like to be able to be around people. i'd like to be positive 100% of the time. but it's ok that i get angry at this disease, because i don't stay angry. and i don't lie when i say i'm thankful for my life, because i am. and you should be thankful for your life, too.
i feel blessed. i'm alive, and not everyone with cushings disease is alive to tell their story. not everyone gets a second shot at life. i'm a walking, talking miracle and that's a blessing in itself. i have a family who supports me and loves me no matter what. i have friends, good friends, who love and support me. i have people who think i'm a champion, a hero, an inspiration, a diamond. i have people who i can lean on, depend on, even when i don't want to. i have a good life, even when i don't want to see it, even when it doesn't feel that way, it's good, and it's mine. when i feel like i have nothing to live for, i'm sure there's something. even if it's just to give someone else courage or encouraging words, maybe that's my purpose, i don't know. but... it is what it is...
it's not easy being me. i never said it was. my story is one that's not finished. thanks for writing these chapters with me. i know it's not easy for you either, but know that your love and support doesn't go unappreciated <3
a
how did you know something was wrong? when i noticed the weight gain and the hump on the back of my neck back in 2008, my doctor told me that i was fat and that i needed plastic surgery to help me. really doc? plastic surgery? and i'm a healthy person. i was working out 2 hours a day, eating salads and yogurt, limiting my alcohol intake, everything. but... nothing was working. i was fat and needed plastic surgery, her words EXACTLY. i was tired alot, and started experiencing depression and insomnia... but i kinda blamed that on my job as a CPS (child protective services) worker, dating a real piece of crapola, and having a busy lifestyle- i was going out all the time- dancing, the shore, the bar, working a SECOND job, spending oodles of time with mister crapola... i didn't FEEL sick, didn't LOOK sick, so i didn't think anything was wrong... i was just fat, right? but then... then in 2010 i was starting to get more depressed and forgetful, i was blacking out, which was really scary. i wouldn't know who or what things were and how i was ending up places... that i think was the worst. and people were starting to think i was crazy... hell, i was starting to think i was crazy. especially when i went to the hospital after one of my big black outs and they told me that nothing was wrong... good job misreading my catscan assholes. that was may 2010. in june 2010, just about a week later, i blacked out, fell down the steps, fell through my front door and fell down those steps. my brother took me to the emergency room where they misread that xray, i fucking hate that hospital, which is why i drive an hour for my er visits now. but anyway, i ended up breaking my foot. so, a few weeks into my break, i see a foot dr who diagnosed that break. and in july i start having crazy bad leg pain. guess who has blood clots? that's right... this girl! and then i had chest pain, so then i had to go to the bad hospital, where they actually got something right and found i had blood clots in my lungs. so i was hospitalized for a week. after i got out of the hospital, i was home for about a week when the horrible headaches kicked in, so to ensure that i didn't have clotting in my brain, i was rushed to have CT done... well, no clotting... just a brain tumor and brain atrophy... lovely. just lovely. and... this could have been caught in may... actually... could have been caught in 2008... because a hump on the back of the neck is a sign of a pituitary tumor. but whatever. can't go back in time, can we? nope. so... low and behold, something was definitely wrong, but i never felt sick. i was starting to feel sick to my stomach at this point... wouldn't you? i had emergency brain surgery in august, which left me blind in my right eye because the surgeon nicked my optic nerve, he did a crainiotmy because the tumor was so big. he said he got the whole thing, he lied. he left 50% of it in, causing it to GROW and wrap around my carotid artery. he sent me to his brother, and endocrinologist who kept telling me i couldn't have cushings because no one had cushings, that i was fat and needed to stop eating. are you fucking serious? and yet his brother, the brain surgeon, told me i had cushings. so who am i supposed to listen to?! the surgeon said i was having radiation. my eye specialist said no way and referred me to a different surgeon, who also referred me to a fabulous endo who i adore. and HE met with a TUMOR BOARD and they decided i needed ANOTHER surgery, a less invasive surgery, one that wouldn't put my vision at risk. so, boom. surgery number 2. april 2011. he got most of the tumor but said i'd need radiation because he couldn't get it all because of it being attached to my carotid and if he pulled it the wrong way i would have lost all facial movement and he didn't want to risk that. so july 2011 radiation. i was put on a cushings medication treatment. and i'd like to say that with the radiation worked. but, i don't freaking know. i lost some weight. but not enough to be convinced of anything.
how did you feel? when i heard the words: you have a brain tumor, i just bit my tongue. it was like, what else can go wrong? i felt like i had to be strong, i couldn't let anything else fall apart. i needed to power through it. i didn't cry until the doctor told me that he was going to shave my head. i was very upset about that. i had just gotten my hair cut and highlighted and i didn't want it to be ruined because of stupid brain surgery!
we didn't know much about anything so we trusted him when he said we didn't have much time to make a decision. it was like, ok, we gotta get this done. when i woke up blind i freaked out. actually, i was more worried about how my mom was going to take the news. i asked the nurses not to tell her until she came to the hospital. i didn't want her to freak out. but, godforbid anyone listen to me, they told her i was going for a CT so she knew something was wrong. i think i handled it pretty well, until i got home. then it was difficult for me because i didn't know what things were or where things were. i was forgetting things and bumping into things. i was irritated, frustrated, angry, sad, i felt alone... i still feel alone. i was humbled. i couldn't bathe myself, feed myself, it was annoying. it didn't last very long, though. i wasn't about to not shower in my own home. i got over that real quick. maybe it took me longer to heal because i pushed myself too hard, too fast but, shit had to get done and i wait for no one. i couldn't take it. i had a life to live!
i worked my ass off as physical therapy, too because i had a concert to go to and i wasn't going to sit there with my walker. i sat through lady antebellum with my cane. the pain was well worth it. i was in bed for a few days afterward, but i survived.
i felt like i was finally going to have answers. i dropped 35-40lbs after my first surgery. it was fantastic! and then, a few months later, out of nowhere, it came back. that was one of the signs that the tumor was growing... and it grew with a vengeance. so my happiness soon dissipated. i had one doctor telling me that i didn't have cushings, and then all the other signs are pointing to cushings, i was showing all the signs: fatigue, muscle aches, the thin skin, dizzy spells, the weight, the moon face, the round stomach, the cortisol levels, the headaches, the forgetfulness, the brain fog, the depression, the anxiety... so much more... but no. he didn't want to listen.
i didn't start feeling like i was getting somewhere until i found my second neurosurgeon, dr.m, and my second endo, dr.v, they are my godsends. they are heaven on earth. they listen. they find answers. they sit with me, they answer questions, they research. they don't brush me off. with dr.v i feel like a person, i feel like he cares, i feel like we're going to be getting somewhere.
how do you feel now? i honestly don't know what's going on with my body anymore. i'm up, i'm down. i'm sick, i'm not sick. i'm prone to infection. my immune system is shot. i'm tired. my muscles ache. i've been battling a sinus infection since november that i'm having surgery for in a few weeks, thank god. i think i'm the only person i know who looks forward to surgery... i'm depressed, i'm not depressed. some days i can hardly move. i'm actually starting to blame alot of this on the sinus infection- pain brings on depression according to the neurologist. but depression is also a part of cushings disease. i know this and i know that the sun will always rise again. :) it's ok to give in to the darkness, as long as i know it won't last forever, even though when it consumes me, sometimes it feels as though it will. that's how today, i know i'm starting to get better, because i can say that it's going to be ok.
i feel frustrated. i'd like to not be sick anymore. i'm sick of being sick. i'd like to be better. i'd like to have answers. i'd like to know what the hell is going on with me. i'd like there to be a freaking cure for all of us. i'd like to not be so tired. i'd like to not need a nap every day. i'd like to be healthy enough to work. i'd like alot of things. i'd like to not worry so many people. i'd like to be able to be around people. i'd like to be positive 100% of the time. but it's ok that i get angry at this disease, because i don't stay angry. and i don't lie when i say i'm thankful for my life, because i am. and you should be thankful for your life, too.
i feel blessed. i'm alive, and not everyone with cushings disease is alive to tell their story. not everyone gets a second shot at life. i'm a walking, talking miracle and that's a blessing in itself. i have a family who supports me and loves me no matter what. i have friends, good friends, who love and support me. i have people who think i'm a champion, a hero, an inspiration, a diamond. i have people who i can lean on, depend on, even when i don't want to. i have a good life, even when i don't want to see it, even when it doesn't feel that way, it's good, and it's mine. when i feel like i have nothing to live for, i'm sure there's something. even if it's just to give someone else courage or encouraging words, maybe that's my purpose, i don't know. but... it is what it is...
it's not easy being me. i never said it was. my story is one that's not finished. thanks for writing these chapters with me. i know it's not easy for you either, but know that your love and support doesn't go unappreciated <3
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...
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...
Thursday, January 10, 2013
welcome to my horror story
i don't like to admit it, but it's true. my life can be quite scary.
i spent the past few days doped up on morphine because the pain was so bad, and i didn't know what the pain was from.
my entire face hurt... it started at my hair follicles, the back of my neck, my eyes, underneath my eyes, my jaw, my nose, my teeth, even my tongue hurt...
and then there was the migraine...
from there we'll travel down to the collarbone, to my arms and my elbows. strange to have elbow pain, but they were throbbing. my hands didn't hurt, yay for that. but i had a hard time lifting my arms.
and then the stomach. painful to touch. and my lower back. i don't get a period anymore, but for my girls who get pms, think of the worst pms back pain EVER.
and then my thighs, and my knees... my knees were screaming, my calves were aching and my feet were crying and my toes were just not having it.
every fiber of my being hurt, and from what? what did i do differently? what was wrong? oh right. i have cushings disease so it all came out of nowhere. welcome to my life.
this journey isn't all peaches and cream. and yeah, i do it with a smile on, because i want to. but let me tell you... i'm still hurting. today i danced around because the pain was gone. but for two days i was in a morphine coma. i fought to the death to even take them. i hate taking pain killers. i probably should've taken them a while ago, but i'm stubborn and try and push through the pain... which usually ends up making things worse for me.
i'd been feeling so much better, too! damnit. fuck this disease. fuck it hard.
cushings disease makes me prone to lots of other things, lots of infections and colds and the like. so guess who has some weird ass bacterial sinus infection that's been killing me slowly? haha. only me. now that i've been diagnosed i can be treated, so the pain will probably be less. but the little things, make everything worse. a little cold for you, will be ginormous to me. it sucks, but it's the hand i've been dealt.
it does suck. i'm not gonna say that it doesn't. and you know what? i am gonna cry about it damnit. that's how i know the pain has taken it's toll on me. if i'm crying, it's time. i can't push through it anymore. if i'm sitting here and all i want is hot chocolate, my blanket, and my mommy, then damnit i've had enough.
and i'm sick of people telling me to push through it. let me give you my uggs and you can spend a day with this shit and YOU push through it. you're not as tough as me. i can guarantee you that. half of you probably wouldn't be as strong as i am. in fact, i've had people say to me that they don't know how i do what i do, how i've dealt with what i've dealt with and that they couldn't do it. and you know what? they're probably right. i appreciate their respect. i appreciate YOUR respect.
so, when i'm tired or cranky or sad or bitchy or sick, do me a favor and be there for me. offer me a hug or hot chocolate or see if i want company and a movie. i probably don't want any of those things because, i'll be sleeping. but still, it's nice to hear, is there anything i can do for you? because some days, this horror story scares the shit outta me.
i spent the past few days doped up on morphine because the pain was so bad, and i didn't know what the pain was from.
my entire face hurt... it started at my hair follicles, the back of my neck, my eyes, underneath my eyes, my jaw, my nose, my teeth, even my tongue hurt...
and then there was the migraine...
from there we'll travel down to the collarbone, to my arms and my elbows. strange to have elbow pain, but they were throbbing. my hands didn't hurt, yay for that. but i had a hard time lifting my arms.
and then the stomach. painful to touch. and my lower back. i don't get a period anymore, but for my girls who get pms, think of the worst pms back pain EVER.
and then my thighs, and my knees... my knees were screaming, my calves were aching and my feet were crying and my toes were just not having it.
every fiber of my being hurt, and from what? what did i do differently? what was wrong? oh right. i have cushings disease so it all came out of nowhere. welcome to my life.
this journey isn't all peaches and cream. and yeah, i do it with a smile on, because i want to. but let me tell you... i'm still hurting. today i danced around because the pain was gone. but for two days i was in a morphine coma. i fought to the death to even take them. i hate taking pain killers. i probably should've taken them a while ago, but i'm stubborn and try and push through the pain... which usually ends up making things worse for me.
i'd been feeling so much better, too! damnit. fuck this disease. fuck it hard.
cushings disease makes me prone to lots of other things, lots of infections and colds and the like. so guess who has some weird ass bacterial sinus infection that's been killing me slowly? haha. only me. now that i've been diagnosed i can be treated, so the pain will probably be less. but the little things, make everything worse. a little cold for you, will be ginormous to me. it sucks, but it's the hand i've been dealt.
it does suck. i'm not gonna say that it doesn't. and you know what? i am gonna cry about it damnit. that's how i know the pain has taken it's toll on me. if i'm crying, it's time. i can't push through it anymore. if i'm sitting here and all i want is hot chocolate, my blanket, and my mommy, then damnit i've had enough.
and i'm sick of people telling me to push through it. let me give you my uggs and you can spend a day with this shit and YOU push through it. you're not as tough as me. i can guarantee you that. half of you probably wouldn't be as strong as i am. in fact, i've had people say to me that they don't know how i do what i do, how i've dealt with what i've dealt with and that they couldn't do it. and you know what? they're probably right. i appreciate their respect. i appreciate YOUR respect.
so, when i'm tired or cranky or sad or bitchy or sick, do me a favor and be there for me. offer me a hug or hot chocolate or see if i want company and a movie. i probably don't want any of those things because, i'll be sleeping. but still, it's nice to hear, is there anything i can do for you? because some days, this horror story scares the shit outta me.
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