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Thursday, April 5, 2012

challenge day 4... its all in your head

i would love love LOVE to only see ONE doctor. ok, maybe 3- pcp, gyn and the eye dr. that would be great wouldn't it? no specialists. no second opinions. no third opinions. no one telling me im crazy... but no. why should i be that lucky?

no one would listen to me. and i begged and pleaded with doctors. 'there's something wrong. i shouldn't be having these headaches'. i fought my way to the ER and asked and asked for a catscan, they did one. said i was fine and sent me home with tylenol... and from there... it all went into a downward spiral.

i was blacking out in april and was forgetting alot more.
id black out driving
i wouldnt know who i was with, where i parked, how i got places
i forgot the names of things.

so let's send nicole to a psychiatrist because she's going crazy. she doesn't really have anything wrong...

one of my blackouts (june 2010) caused me to fall down the inside steps, out the front door and down the outside steps. i guess i mustve opened the door? i have no clue. but i went to the ER and they diagnosed me with a sprained foot. and told me after 5 days i could walk on it. awesome.

so i walked on it and walked on it, and went to Six Flags on it, still lots of pain. enjoying my pain killers. and nothing. still having headaches- just not as many bc i was on tylenol with codeen. but i was walking awkwardly... and at six flags... all of the upside down coasters were out of order... which will be a godsend in a few paragraphs.

i finally got a foot doctor to rexamine my foot- you broke your fifth metatarsil nicole, it's clear as day on the first xray, it's already starting to heal itself
so he casted me and i was out of work again

but, and i quote "we dont believe your headaches, but THIS we can visibly see" gee thanks guys.

and with the cast came leg pain. like OH MY GOD leg pain. at first, it was a small pain in my calf, like a charlie horse. that went away. then, they became more frequent and lasted longer. the pain was so bad one day that i ended up missing work because i had a fever and was throwing up. mind you- i had called every day for 3 days complaining and the receptionist just told me to take my pain meds, this was normal.
i guess she got sick of me because she finally just told me to come in. so i had my dad take me. he sawed off my cast, pushed on my foot, i screamed and he sent me for an ultrasound. great.

guess what i got? blood clots in my leg. oh happy day... but im faking right? its all in my head?

so i get put on lovenox and cumaden and am told, if you have chest pain, go to the er.
uhm... im an asthmatic, i always have chest pain.
so of course, the next day i feel like someones twisting my chest. so i take advantage of not having the cast, i shower, shave, paint my toes... and go to the ER.
guess who has blood clots in her lungs and is being admitted?! THIS GIRL.
so im in for a week.
and i almost got kicked out of the hospital. i cant help that my 'friends' are loud and want to visit me and make me smile. such is life. i made friends with the nurses. no one realized how serious these things were because... i was just faking it, its all in my head, right?

i get released from the hospital. and am doin ok. still havin pain in my foot, enjoying my scooty- rolling around everywhere. wearing sneakers to work- good times. and then the headaches came back. like... hardcore. so i call my sister, who works at the pharmacy. she talks to her pharmacist and im told to call my dr right away. i could be having effects from the cumiden. so, i call my dr. i go for an ultrasound and... dun dun dunnnnnnnnnnnnn

'you dont have a clot in your brain.'
'you have a tumor. on your pituitary gland. and brain atrophy'.

it's all in my head, right?

the hits just seemed to keep on coming!
my mom grabbed my hand but i shook her off of me. he sent me for an mri. and i broke. right in the machine. i flipped out on the lady who ran my foot over. tried to breathe through it, but i couldnt. i just couldnt. i broke into hysterics so the mri took longer than it should have. but i did it

and then i had an appointment with a neurologist. but my head hurt so bad that i wasnt waiting. i rolled in there and said, i want to see dr. so and so now. i told them who i was. i also told the receptionist that i knew the nurse. she brought me up and said id probably have to wait. and i said i didnt care. i was in so much pain i couldnt see straight.

the dr came in. we called my mom. her and my dad picked up my mri disk while i laid in a dark room trying to get rid of my headache. sitting with the nurse bc growing up she was like a second mother to me. and they came back. the dr went over my ct from may and my scan from the previous week. (its july 2010) and guess what? the tumor GREW and was clearly visible in may. FANTASTIC!!

i love the medical field. i really do.

so then i make appointments for neuropsych testing, a neurosurgeon bc the tumors so big it needs to be removed. i was told i had plenty of time for this.

the dr gave me an injection and told me not to go to work. he said itd make me tired. i said i didnt care. i needed to work. so off i went. trying to hold it together. sat down at my desk. looked at my friend, burst into tears. im scared. i dont know whats happening. what did i do to deserve this? why me? im a good person. i always try and do the right thing. WHY WHY WHY?!!!!
and then i fell asleep. on my desk. and my boss let me sleep. because... well... how do we handle this?

because ya know, its all in my head right? maybe its just a bad dream

nope. not a dream. its reality. its happening. so im smiling. im being brave. im taking control. im not gonna let this bring me down. i always survive. always.

and then i get the call. you need emergency surgery. your tumor is too close to the optic nerve. if you dont have this surgery, you're going to go blind.


so we meet with the surgeon. i was fine until he told me he was doing a crainiotomy. he was going to shave half of my head- my beautiful hair was going to be gone, and he was gonna hack into my skull and get rid of the tumor.

but i should go to the beach for a day with my family to ease my tension. so i did. and i saw george and chell and conner. my strength. but... it took all i had to not break
but i had george. who wanted his heart to beat inside of me, because we were going to get through this together. his heart was my heart. his breath would be my breath. because that's what family does. thats what cousins do. thats how true friendship should be. unconditional love, in sickness and in health. always. forever. no matter what.

i had 3 days to decide. no time for a second opinion...

and in we go. i get a greenfield filter put into my chest to keep the clots from moving up.

a few days later im doped to high heavens and am having my brain ripped apart.

i woke up fine. asked my sister if she checked my facebook. and everyone laughed.

and then the darkness set in.
no... not depression
literal darkness.

i cant see. the nurses come in to do my neuro testing and i cant see. everything is dark on my right side. there is no periferal vision. theres no way to detect light. everything is dark.

im now blind in my right eye.

i was rushed for an MRI. i begged them not to call my mom to tell them. ya know, that whole HIPPA thing... so my mom called. and they told her. and she was right there.

i chose to ignore what was going on. i just kept asking for a washcloth to put over my eyes because i had a headache and didnt want to deal.

so im still in pain. i cant see. my head hurts. my body hurts. my head is shaved. great. i cant walk. im using a walker... but im down 55lbs. holla!

so i go home. with a headache. unable to walk. unable to feed or bathe myself. not remembering what things are. or how they work. needing sticky notes on things to tell me what they are or how they work. needing 24 hour care. waking up, opening the wrong eye and thinking im completely blind. having the guy i was dating tell me i was better off dead.
starting to feel like i was better off dead.
what kind of quality life was i going to have? im 26 years old (i was 26 when it all happened)
but i pushed through it.
i had no other choice.

i did physical therapy. the weight came back. i was never hungry. i was nauceous all the time. shitting all the time. dizzy. sweating. in menopause.
but still fighting.

my mom and i went to see lady antebellum. i fought for about an hour to be able to stand online to meet danny gokey.
didnt happen
i almost collapsed.

but we met him anyway at another private event. that was cool.

and then there was my birthday. my parents took all of us to the shore and stayed in this awesome hotel with a jacuzzi and an indoor waterpark. of course, i only went into the jacuzzi... but it was 80 degrees that weekend so i walked in the ocean- my birthdays in october.

and then there was hanson. that was life changing. i told everyone God wouldnt bring them to stroudsburg if i wasnt going to make it. and i met them. we all did. and they gave me a signed guitar.

things were looking up. or so i thought
more headaches. more moonfacey. more fatigued. more everything. i was told i needed gamma knife radiation. my eye specialist wouldnt hear of it. so he gave me the name of another neurosurgeon to talk to. he did a MRI. he met with a tumor board. i needed a second surgery.


youre gonna crack my skull AGAIN?!

no. hes going thru my nose, which is what should have been done the first time. but it was going to be more difficult, because not only did the first surgeon leave in HALF of the tumor, it had begun to grown, and wrap itself around my carotid artery.


so second surgery we go. they had me stop working 12 days before my surgery because of the anxiety/panic attacks had elevated and i could barely function.

so of course i went to the shore to heal.

and then i had my surgery. but they didnt get it all. he couldnt. if he did, i would have lost all facial movement. so he left it in. and i would need radiation in a few months.

there was alot of pain. alot of anger. alot of frustration. a lot of everything. my nose wouldnt stop bleeding or leaking. i ended up having to  be rushed back to philly to check it out. but i was fine.

and then came the radiation. not typical radiation... no no. 20 hardcore proton beam radiation. a normal person would only be wearing that halo and dealing with it for 2 hours. not me. 14 hours. im a freakin champ

and then i slept for 2 days.

i was more tired. more nauceous. more sick. but that was supposed to cure me.
and then the medications started. and now here i am.

still sick
still not cured
but working on it.
still smiling
still staying positive.
still sick.
and a cushie.
the queen.

they say theres no sign of residual tumor.
they say my cortisol is lower

so why am i still tired?
why am i still sick?
why do i still look like this?

and now theyre saying i have occipital nerve blockage
and im losing bone in my spine.

i forgot.
its all in my head.

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