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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.

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

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...

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.


Monday, January 7, 2013

jump off a cliff

yes. i said it.

jump.
        off.
              a
                 c
                   l
                     i
                       f
                         f

wheeeeeeeeeeeeeeeee

was it fun for you? was it? i hope so. because you've basically told me to jump off a cliff with your deafening silence. and then you come around only when you want something. and let me tell you how GOOD it feels to just NOT CARE anymore! and you may sit back and read this and say, well, if she's writing about this then she must care. but the truth is, it just feels good to say NO! it really, truly does. it's like, i haven't talked to you in HOW long? i don't know what's going in in your life, and quite frankly, i don't want to. we don't exchange hellos, or how are yous... nothing. i don't even see your shit on facebook because i have it hidden. we're 'friends' to save face. and you know what? that's fine. but then you come to me asking for my help? and my responses are short and tell you to help yourself. THAT felt good.

there's no need to use me. if you know me at all, you know that i'll tell it like it is. i will call you on your shit and if i feel like you're using me, i'll tell you i feel like i'm being used. even though... i haven't. but i will. the song "be the girl" by aslyn comes to mind. i'll post a youtube link and the lyrics. because it seems to be fitting.

but again. jump off a cliff. because, i don't need you. i really don't.

why should i? because i'm sick? because i'm disabled? i don't know if you've noticed or not, but i'm doing quite well for myself. i have a family that loves me. and incredible medical team that helps me. the friends that i DO consider my REAL friends, rock my socks. and i'm holding food down. yeah, i'm on a lot of medications. and yeah, i'm sick. but whatever. i've got love in my heart and YOU didn't put it there. i have a positive attitude about everything. i'm smiling. yeah, i have really rough days where it feels like the darkness can take over, or my limbs go weak or the fatigue is awful... hell, i'm dealing with more than you can even imagine, shit i don't write about because, well, i don't want to. am i freaking out about my surgery? eh. it's just surgery, but it's never JUST surgery... is it? *sigh* and this whole medicare/medical assistance thing is crapola, too. but i DO have health insurance, so i'm thankful for that. but i can't help but wonderful, if that cuntwhore of a caseworker i had hadn't had fucked me over... would i be needing this surgery? or would i be not so sick because i would have had health insurance had she had done her job, and then i would have been able to go to the doctors and gotten a ct and antibiotics, etc etc etc...

but anyway. yes. being sick sucks. and is draining. but i also make the most of it. i'm not going to let it steal my sparkle. so why don't you let MY illness affect you AGAIN because i forgot that it's all about YOU, right? my life somehow revolves around you.

there's your cliff. hope your parachute opens.

Aslyn, Be the girl

Friday, January 4, 2013

how am I doing?

how am i doing?  how am I doing?  how am I doing? wow...

i guess i don't really answer that question in my blogs, do i? i have a new follower, and she actually asked me how i was doing... with the cushings and with myself. so... here gif i geoes.

i am... alive. i had my cortisol levels checked back in novemeber and it was normal. so that's good. i'm still... blah. if i get too excited, my adrenaline pumps and the next day i'm completely useless. i'll have to rest, take pain meds, have dizzy spells... it's a good time. or i won't be able to sleep. or my anxiety will go nutty. or the walls will feel like they're closing in.

that's something that i'm dealing with now. or have been the last few weeks. the walls have been closing in. sort of. everyone's been getting on my nerves. if you chew your food the wrong way i'm ready to rip your face off. it's like december became my october. part of me thinks it's because of the people i've been dealing with and the problems that have been thrown on top of me. but when i'm sick, everything is magnified. sometimes i think people don't remember i'm not healthy, or they get annoyed with me when i can't do everything i used to. get the fuck over it. but the walls... these walls... oy.

i had no health insurance in december, remember? so i was told 'not to get sick' and sick i got. well, sicker. i have no sense of smell. it hurts to wear my glasses. the pressure in my face is absolutely insane. my ears, my eyes, my nose, my neck, my shoulders... EVERYTHING. it's to the point where i want to put my head through a wall. i never take my painkillers because i've been getting better, yesterday was tylenol after tylenol followed by dilauded! i haven't needed one of them in SEVEN months!!! SEVEN! so you can imagine the bag of fun that i was last night! my friend got to experience the weirdness that was me... haha. i was a good time. it's nice that he stayed awake and checked on me though. it's nice to be cared about...

so how am i... the walls have felt like they were closing in. i've been getting sicker. i finally was able to go to the doctors. i'm having sinus surgery in february. my doctor says i'm his favorite, well duh. i'm everyone's favorite. ;)  i got put on a high dose antibiotic and a nice course of steroids yesterday, which worries me because the last big antibiotics i was on gave me cdiff and i ended up in the hospital and steroids + cushings = no fun AND will make me bitchy, so watch out. yall thought i was hulkish before... here's your warning.

so how am i... i'm feeling... happy. i have a new song in my heart and it's  beautiful one. physically i'm trying to stay afloat. mentally i can feel myself start to sink. but i'm working on ways to keep myself up. i'd ask you for your opinion, but really, i don't want it.

oh and don't fucking hit your kids. because i'll come after you. asshole.

let's see... how am i. i've had some muscle weakness. i'm dealing with foot and leg pain. when the weather changes i have these weird pains. idk what that's about. so i'm using these pain patches my mom got, but they're holistic so it's not hardcore drugs. they really help with the foot pain. not so much the leg pain. santa brought me a chillow. i've been sleeping with it under my neck to help with the headaches but the past few nights, i've been using it under my legs and it seems to be helping. i highly recommend it.

what else... i feel kind of taken advantage of. like i'm around when people need something. and that's pretty much all i'm good for. it's an old song and dance. but it's how i feel. and it's sickening. but i don't know how to say anything or turn people away. i kind of feel like everyone needs someone to love them, so i might as well be that person, but it's so fucking taxing. so... i'm just going to start ignorning text messages and phone calls. so if i just stop talking to you... consider yourself that person :)

i fucking hate steroids. i can just feel myself getting bitchier. what a great fucking day i'm having seriously.

i had a really good night on wednesday. i got out of the house. watched some boys play pool. laughed alot. it was much needed.

tomorrow afternoon i have something to do, too.

i guess i'm just sick of being sick. i'm ready to be healthy again, to be back in the work force, to be a productive member of society. you're not the only one who's sick of me being sick. sometimes i think ya'll think i'm living the high life. why? because i collect disability? yeah. what a great thing that is. i worked my ass off for it, but now i'm on medicare. which is a bitch. so, i don't make that much and i'm putting a shitton into health insurance- kind of like YOU! but the thing is, some days i can't get out of bed. and the days i'm healthy enough to do things, what is there for me to do? i'm running out of things to paint. i'm reading a book, a great book actually. i love it. but it takes alot for me to focus on it. i'm going to start a pottery class, soon. that should be fun. i'm going to sign up for a salsa workshop, too. if i like that, then i'm going to enroll in the classes, it'll give me something to do.

so yeah. that's how i'm doing. i guess. idk. i'm pretty happy in my heart though. i just don't feel like writing about it.

i just don't feel like feeling right now. maybe it's all the drugs they pumped me full of. maybe it's the fact that it's 6:30 and the last time i ate something was... lunchtime yesterday. i'm just not hungry. it's part of cushings. but i have to eat with the steroids, but if i force food into my system i get more nauseous. so... it's a catch 22. oh, and of course medicare isn't going to cover my nausea meds so i'm fucked when it comes to feeling better that way.

whatever. i need a drink. maybe i'll just do that.

so that's how i'm doing.