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Monday, April 23, 2012

day 23... its a dogs life

ever say to yourself... that dog has got the life! they just lay around... sleeping... cuddling... sleeping... peeing... sleeping... eating... sleeping... sleeping... sleeping....

ive said that.
ive wished for that

and now?

i have that.

im not sure how i feel about that. i sleep. alot. alot alot. and i can just sleep for days and days and days... and its like, if i wake up im still tired. i can be awake for 4/5 hours and then sleep soundly at night. and wake up and i can still sleep the day away... *sigh*

so is a dogs life really all its cracked up to be?

Sunday, April 22, 2012

day 22... its gettin hot in here... or is it me?

its definately me.
its always me.
haha

and i dont mean because i look so damn good either. its  maybe... 46 degrees outside. the windows are open. im wearing shorts and a t-shirt... and whoooooooooooosh hellooooooooo hot flash! my hair just curled because i sweat so bad!

its so gross. my face turns multiple shades of red. sometimes i dont sweat. i just get pink. then red. then pink. then normal. but holy cannoli batman! i cant take it anymore! some days its not so bad. some days i have none. and its great. and other days... they come on every hour or more. it sucks.

i keep a battery operated fan in my car so i dont freeze everyone out when were on long trips.

some people think im strange, but, whatever.

and i keep bottles of water on me, at all times. the people at the theatre let me bring them in now because they know me and know that i NEED water. i MUST stay hydrated or ill get sicker. thanks cushings. i guess thats kind of a bonus because then i dont have to buy water there ;)

cushings= menopause. no, not for everyone. only for some. i think its because our pituitarys are shot. and i think it depends on the type of cushings you have. whether it be the disease, the syndrome, cyclical, etc etc.

i feel bad for picking on my mom for what she was going through when she went through 'the change'. it is not a fun change, no no... aside from not getting my monthly visitor. i do love that. but ive been loving that since 2009... when it started getting really irregular. it used to make me so sick id miss school (high school AND college) one time it made me so sick i missed work at CYS and dbag had to call me out bc i couldnt stop puking. that was a wonderful day... but ya know, my gyno said, oh it's normal..  you're on birth control. IT WASNT FUCKING NORMAL. i dont know why no one ever wanted to listen to me.

and the boobs. i love my boobs. i do. but... it'd be nice if they were a little more... symmetrical? is that the word? itd be nice if they were more the same size. yes, i know. every girl has one a little bigger than the other... but a full cup size? really? ive got a DD and a DDD. awesome. we pointed that out to the drs too... but they just said it was normal. or the other one would grow. it wasnt always this bad. i used to be able to wear those camis with the shelf bras but... not now. that was before i got sick. before i got cushie and got fat. and dont tell me im not. no wait, yes. tell me im not. i just wont believe you lol.

hot damn. i need an ice pack.

and now theyre saying its going to snow tomorrow... im thinking shorts and a tank top!

Saturday, April 21, 2012

day 21... must love... doctors?

some people say they don't know how i do it... go to the doctors so much.

well, i don't now, but at the beginning, hell, for most of this journey, i was going to one a week, some days id have 3-4 a DAY, let alone in a week. most ever in a day? 7. in philly. it was kinda fun though. met a reeeeeaaaaaaallllllllllyyyyy sexy cardiovascular guy. he was yummy. and he had jokes. and he said hed visit me in the hospital. i didnt believe him. but... there he was. in jeans. in my hospital room. on his day off. because he wanted to check on me...

anyway... i could have a hatred for doctors, seeing how no one wanted to listen to me. i was told i was fat. or it was all in my head. or i was fat AND crazy. but... as we now know, that wasn't the case. finally someone listened, it took a broken foot and some hardcore blood clotting for someone to listen, but hey, at least someone listened, right?

i loved my internist. id use names but, idk if hed get in trouble. so anyway, he was fantastic. he and his PA were always researching cushings, drs, medications, treatments, anything and everything they could to help me. when i was having a meltdown, i could call their office and be seen. one of them would sit with me and talk with me and help me. they were wonderful.

my first neurologist, he was alright. i only saw him once. and then he sent me off right away to my first surgeon. im sure he didnt know what a douchebag he would be. we sure as hell didnt.

we liked the first surgeon. we TRUSTED the first surgeon. we hung on his every word. we didnt know any better. he said right away. he said emergency. he siad id go blind if we waited. so ok. we did it. we went for it. how were we supposed to know he was going to do it wrong? he said going blind was a risk if i DIDNT have the surgery, not a risk of the surgery itself!!! we listened to him... and he screwed us.

we listened to him when he sent us to his brother in law as an endocrinologist. his brother in law who told me i didnt have cushings. his brother in law who said i needed to stop eating. his brother in law who told me that there was no way i had cushings and my cortisol levels didnt make sense to him. his brother in law who was a fucking piece of shit and i hope he gets run over by a fucking elephant!!!

and then this first surgeon said i needed radiation. so i went to my eye specialist. oh, hes wonderful. the first surgeon hooked me up with him since he fucking made me blind. and this specialist is a godsend. top 10 in the country. anyway, he said no. no way. no how. he said i needed a second opinion. so he sent me to philly. he sent me to thomas jefferson. and i adored my second surgeon. he was wonderful. he IS wonderful. his nurses are wonderful. he took the time to get to know me, my family, everything. became a part of my life. which i think is important. and then i needed a new endocrinologist. so he recommended one.

and then i told my internist i needed a new endocrinologist. and he recommended one. and he hadnt spoken to my new surgeon, but they recommended the same one. done. awesome

and he is. my endo is freakin fabulous! i love him. he laughs with us. eases our minds, and not just about endo stuff, about all stuff. stomach stuff, neuro stuff, psych stuff, cancer stuff, all stuff. and he's awesome. and he gets back to you.

and then i had to get a new internist. thanks medical assistance. i had to leave the dr who saved my life. freaking awesome. did that near kill me? you betcha. but he recommended a dr for me. and i like my new dr. hes good. hes recommended. but i do miss my other guy. he was like family :(

my hematologist rocks. he calls me back himself. and he fights my insurance company when they dont want to cover things. "this medication will save her life. do you want her death on your head? i didnt think so" love him :)

my otolaryngologist rocks too. i met him because of my second surgery. he takes good care of me. love my sinus rinse samples- that shits expensive! and he laughs. and reads my charts. and keeps up to date with me. says im the poster child for transphenoidal sinus surgery.

i have a new neurologist and he's freakin sweet. he talks fast and has an accent, but that's ok, because he tells you that and then tells you to tell him to slow down. he asks questions. he takes notes. he laughs with you. he did some test to me and since it made me laugh, he did it to rae too. which made her laugh. i made him drop his pen. it was a good trip. and he said hell run whatever tests i want to ease my anxiety.

and then theres my therapist. i love her. she is amazing. and i wouldnt want to have my head shrunk by anyone else. ive seen other shrinks before, but ive never felt as comfortable with anyone as i do with her. hell, some days i spend most of our visit in her bathroom, and thats ok. i can text her while im in there if need be. maybe thats gross to some, but... we just have that kind of relationship.

thats what i like. all my doctors talk. they all read my charts. they keep in touch with each other. they know all about whats going on with me and they fill each other in. they keep ME in the loop. they genuinely care. when i had my surgery, they called my house. they called my parents to check on me, they called to check on my parents... that means something. that says something. where are you going to find care like that?

i make friends wherever i go, it's just what i do. theres a joke, wheres your entourage? because i always have a ton of people with me. my first surgery- i knew all the nurses. one of them would bring me vegetables from her garden. the dietary guy would leave snacks for my friends in the fridge on my floor. he also brought his pastor to pray with me the day of my surgery AND the day of his daughters wedding, came in his tux so i could see him. i had a nurse bring me in pictures of her daughters because my sister and i reminded her of them.

my second surgery i had nurse dan who was constantly making jokes with me. my doctors would laugh with me.

my old blood lab... me and those girls were BONDED. and even the lab i go to now, its, hey nicole. they know who i am. its all good. i do miss my kelkel. we keep in touch though. and she loves my family. and they love her.

THAT is how i do it. i make sure to LOVE who i see. who i HAVE to see. if im going to be in a longterm relationship with someone, i want to at least like them :)

so thats what i do. i bond with them. find common ground. cross boundaries. i probably shouldn't know my drs backgrounds or their personal lives or have their cellphone numbers, but i do. and i think that's ok...

maybe that's one of the things i like most about myself, what i liked about me as a social worker. i didnt mind crossing boundaries. people needed to know that i cared. that i do care. and that's ok.

love does conquer all you know. ill never stop believing that. never

Friday, April 20, 2012

day 20... 4/20... let's all get high...

juuuuuuuuuuust kidding!!!

haha. but let's use todays challenge to talk about medications, shall we? and getting high, on life that is.

as needed:
dilauded- for pain
tylenol w/ codeen- for pain/headaches
ativan- before bed, as needed for anxiety
bentyl- stomach
zofran-stomach
pulmicort-sinus/chest
sinus rinse
nebulizer
cholestyramine- stomach
hyoscamine- stomach
occipital nerve block- injection into my brain once a month

am:
400mg ketocanazole
40mg protonix
50mg cozar
10 ml arixstra
125mcg synthroid
500mg calcium
1000 iu vitamin c
25 mg phrenegan
cranberry supplement

pm:
folic acid
500mg calcium
1000mg vitamin d
20mg doxepin
10mg zyrtec
400mg ketocanazole
25mg phrenegan
5mg melatonin
25mg topomax (which will be bumped up next week)
acididopholous

think im on enough?
i will be adding fosamax into the mix in a few weeks, once the topomax has had some time to kick in and we see if there are any side effects, and then i have to find some fish oil and flax seed oil to add in to my med mix... yay.

im like a walking pharmacy.

i print out this list and give it to the dr every time i go. it's so much easier than remembering it all. i also have it saved on my phone so i can just pull it up that way. its important, as a cush, to always have a copy of your med list with you, the drs wont always believe you. i also wear a medical id bracelet with 'cushings disease, factor 5 lieden' on one side, and the other ' risk of adrenal crisis. allergies: sulfa, latex, penicillin, levothyroxine'. my friend amanda got it for me, and i havent taken it off since i got it... except for my MRIs. i think im ordering one for my friend. hes not liking the fact that hes going to need one, so i suggested we get matching ones... kind of like best friend bracelets, cheesy i know but... i am all about the freaking cheese!!

so yeah. its important to keep a record of all your meds. i also carry around a list of all my drs and how to contact them. this way, everyone's in the know. it's easier that way. i have that list on my phone, too.

i think ive been on a gamut of different pain killers. i cant take vics- they make me hallucinate. i cant take percs they make me pukey. morphine works, but they wont prescribe that, and yet they prescribe dilauded which is 10xs stronger. i hate taking pain killers. hate it. i dont like the way they make me feel. dilauded always dopes me up and i end up having an out of body experience... its crazy. the only thing i like taking is the tylenol. it usually helps, except last night. the headache i had was KILLER! im thinking its because of my contact lens. i really need to get a new script but... i dont know if insurance covers it. maybe ill call today and see whats what.

so yeah. today is 4/20. and while some of my friends are getting lit or getting drunk... i am planning ways to get high on life. or id like to if i didnt feel like such garbage.

i felt so good yesterday. well, sort of. my heart felt good, well, good and sad. i went to that adoption and it was beautiful. i got to see my favorite family, watch one of my favorite old clients get adopted, saw some of my old coworkers, hung out around the courthouse, spend some time in juvenile probation... and yet... i just wanted to cry. hard. some happy tears yes but.... idk. did i miss it? did i miss my job? i do NOT miss the people i worked with, ok, a few people i miss, but those people i spend time with so... im not missing out. and im in touch with the foster families that i bonded with so i have that... i just... i dont know. maybe it's because i thought i KNEW what i was meant to be doing with my life and now... now i just have no clue.

janice came to the house yesterday, leilas house, to meet with our girl. and she didnt know how sick i was. and i told her. and she was like wow. and she said that she was meant to be there, with me, at that very moment. and that theres a reason im here. and i know that. im meant to be here, i just.. i dont know what that reason is. maybe its to keep others going. maybe its to encourage and to love and to keep making a difference. maybe its to write a book... alot of people have been suggesting the book thing to me...

i just feel like im starting to fall into a dark place, and this time its harder to crawl back out of it. i know its the cushings that's doing it, but, that doesnt make it any easier to crawl out of.

part of me thinks its because im so tired. and part of the reason im so tired is because the keto got bumped up so my body is trying to get used to it again, or used to the new dosage and the time of day im taking it.

i dont know. oh right. i was writing about being high on life.

i need to be reikied. seriously.
maybe ill play with the chakras.
do some meditation
buy a pendulum

id love to go out today, but i dont think driving alone is such a good idea at the moment. maybe i need to eat something. but my stomach is back to being on the fritz so im afraid to eat something. oh life... <3


Thursday, April 19, 2012

day 19

i was going to write about how ive started to get used to being alone. and i have. i mean, id rather have an awesome social life, or spend time with my friends who seem to have forgotten that i exist....

or i could write about how im discovering that im the friend of convenience, that im only good enough for some people when THEY need something... or they need their egos boosted....

and how ive been so scared the past two weeks and felt so helpless and yet... no ones really asked if im ok... (and when i say no one, there have been 4) and people DO know that im going through something. a big something. and yet... silence.

and i could tell you how yesterday, i heard from people i didnt expect to hear from, which was a nice suprise, but the people i expected to hear from and wanted to hear from... i havent...

and i could tell you how it hurts my heart. and how i've pretty much stopped speaking to alot of people. and if they want to pursue our friendship, it's all them.

and i could tell you that once you get used to being alone, it's really not all bad.

i could go on and on and on about that... but i wont.

nope. today.... today is going to be a beautiful day. it's going to be a day full of sunshine and smiles and happy tears.

today feels like a wonderful day for adoption!

i worked for 4 years as a social worker, and today, one of my absolute favorite kids is being adopted by her foster home. her absolutely incredible foster family has kept in touch with me when i got sick, and all the year/months after. i was invited to the adoption today, so how could i say no?

this family welcomed me with open arms as i started coming to their house. the love they shared with one another was beautiful. just walking into their home you felt loved... it was like walking into my own home.

sure, i probably crossed the boundaries. i used their bathroom. i played outside with the kids. i ate dinner there. i went to her husbands funeral, and then to their house after... but whatever. i think social workers SHOULD care. i think we make a bigger difference when we do.

i havent been able to return to work, dont know if i ever will again, but they have kept tabs on me. made me feel like i mattered. still invite me to things for the kids, and to dinner... even though the last time i was supposed to go to dinner i got so sick i couldnt go, and ended up in bed for 3 days. and you know what she said? dont worry. well always be here and we love you. get better.

its nice to not have people get mad at me when im too sick to do something or i need to cancel plans because i get sick. those type of people are few and far between.

but anyway... today is a beautiful day to watch a family come together :)

brain surgery-bringing people together since...

day 18 baybee.

dont ask me how im functioning right now, because i honestly have NO flippin clue. im so exhausted from yesterday, i legit slept 20 hours straight. and then random naps here and there. ill be going back to bed shortly.

ok, so i gave in to the fatigue and went to sleep. so let's attempt day 18 again, shall we?

bringing people together...

ok. so, before i got sick, my grandfather (moms dad) was really sick. he had been sick for quite some time. the drs never could figure out what was wrong. oh wait, the assholes did figure it out- gave him a diagnosis of esophogeal cancer FOUR HOURS before he died. they always said he was making it up, or it was all in his head or that he wasnt in pain where he said he was... fucking idiots. its because of how sick he got, that my mom became such a patient advocate and wouldnt take the doctors answers for either of us.

anyway. there had been a nice falling out in our family when he passed. my mom and her sister had always been super close. and then... things happened and they stopped talking. i developed the fuck you mindset. like seriously? and then i got sick. really sick.

so i did what any bitchy kid would do. sent this text message :so, i have a brain tumor and am having brain surgery in 2 days. you might want to call your sister.

sweet right? well... i honestly didnt think she even deserved to know, after the way she treated my mom. but turn the other cheek right? grandpa wouldnt want everyone at odds, hed want everyone to come together.

so my aunt asked me what was going on. and all my responses were, call your sister. text your sister. i wasnt going to say anymore. i didnt need her to be there for me. my mom needed her. my mom was falling apart in front of me, and that was not something i was prepared for. my mom was trying to be strong for me. my dad was trying to be strong for me. and all anyone really was, was scared. i think i held it together pretty well. i didnt break down until i hit the beach.

everybody needs somebody... and BAM. it took some time, but my being sick kind of forced them to rebuild their relationship...

you're welcome :)

as for the bitchy texts... i did that to more than one person...

i was tired of being treated like crap. and watching my friendships fall apart. why the hell do i have to be the one to hold them together? so i decided i didnt want to do that anymore.

as most of you know, i broke my foot and thats how they found the tumor. so i got a text from a friend saying, hows my favorite gimp?

my response? you mean the gimp with the brain tumor who needs emergency surgery? that gimp? oh she's fine...

that's all it took for that friendship to go back to the awesomeness that it once was. now it feels like it's kind of falling apart again but... shes married and pregnant and im still sick so... really... why make time? right? she has her own life. and that's fine. something im getting used to...

im really getting used to this being alone thing... hmm... i guess i see day 19...

Tuesday, April 17, 2012

challenge day 17... let's talk about sex baybee

sex and cushings? ready..... go!!

i hadn't planned on writing about this, but a couple of the girls in my support group were talking about libidos and sex drive, etc.. etc... etc.

so here's my experience.
mom, you may want to stop reading here.

i enjoy sex just as much as the next person... maybe a little more depending on the person im dating. im in no way a slut, my numbers are NOT high (not even double digits) and i wont spread my legs for anyone.

do i have stories that could make your headspin? of course
are there things i probably SHOULD remember and dont? yes
are there stories that i dont write about because my mom might faint? you betcha.

so anyway

alot of cushies have lack of sex drive, or lost their sex drive.

so as i sit and think back... i never really lost it. i mean, i used it as a coping skill, and eventually the guy i was dating, my libido wouldnt work for him. i dont chalk it up to cushings, i chalk it up to he was a piece of shit and i was unattracted to him so i couldnt get myself to WANT to sleep with him. but ya know, i was the dutiful girlfriend, so i banged him anyway.

and then there was the cushings/brain tumor diagnosis. and he became an even bigger piece of shit. so i left him. and then he went nuts blowing up my phone, my friends phones, to know how i was doing. seriously? fucking scumbag.

but im an ass and let him into my life again, sort of. i had a sense of normalcy, and i knew i could get what i wanted out of him. so we ended up hooking up a few times- while he had a girlfriend, nice right? and the day BEFORE she aborted his baby, we ended up hooking up. what a stand up guy... but i really didnt give a shit, which sounds terrible, but i didnt. if he didnt care, why should i? and it felt good to know my parts still worked!

but i left him again.
started dating someone new. i kind of became a serial dater. this guy was aight. nothin special to look at, nothin special, at all... really. no goals, no nothing. but he was a good kisser. and thought i was uh maze ing.

and i left that one too. he was just... NOT worth my time. at all.

and then there was chris. oh dear lord. why he had to contact me ill never know. they say you never forget your first love, right? yeah... i dated him when i was 15/16. and i was crazy about him... but he was fucking WEIRD. i cant stand boys who cry. ok, no thats not true. i think its sweet, but seriously, you SHOULD NOT be crying more than me. so i dumped him. he was tooooooooo in love with me. im 15 years old and hes talkin about marriage and babies... seriously? i dont know what i wanna have for dinner and you wanna marry me? talk about sending a girl running! PLUS i was 15, wtf? so i enjoyed the many boys of high school. and i never really spoke to him again. and then he found me on facebook. and i was excited. so we hung out a few times. he came to see me in the hospital after my 2nd surgery. the chemistry was on point. but the sex? oh my god, i was always excited for it to be OVER. he had this 'im the god of sex' complex and it took all i had to tell him, dude, you fucking suck. you dont know how to use your dick and its small as hell.

normally, size doesnt matter. and im a firm believer in that. but if you dont have the size, know how to use what you got, right ladies? but whatever, my parts worked.

one of the things i think i like about cushings, is that our skin and our bodies are so sensitive. i think my body reacts differently than everyone elses. the littlest touches send chills down my spine. or they did anyway.

typically, with cushies, our sex drive dies, we dont lubricate, or experience what we should.

and yeah. i probably can never give birth. but my friend linda said, a working uterus doesnt make a mom. love does. and i really liked that.

but anyway. douchey douche and i broke up. because hes a slimelord, and got mad at me bc i got denied disability. then hed yell at me that i was going to leave him when i got better and would get mad at me when i was hanging out with my dad.

turns out he was fucking his mother.

thank god i left that situation! smh. talk about gross... fucking psycho. AND he tried to withhold my medication, lets not forget that.

i had stopped sleeping with him LONG before we broke up. he just didnt do it for me. and every time he looked at me or went to touch me i wanted to throw up. RED FLAG!!! if you want to knock the person your dating out, every time they breathe... kind of not the best relationship to be in, haha.

so, yes. sex. love it. having it now? no. because im unlike alot of my friends- i wont open my legs up to just anyone, or just because i wanna get laid. seriously, if i feel the need that bad, i can just go buy a flipping vibrator. i dont want a disease. i dont want to be used. some may say its because im uncomfortable in my own skin, or with my body. but thats not true at all. i got naked for chris, before i started to look as good as i do now. so... yeah. hes a slimebug, but i felt comfortable enough in my own skin, so for that i thank him.

if/when i get into another relationship, eventually that line will be crossed. but i have to trust the person, and actually give a shit about them. i dont want to fake it (the relationship, not the orgasm, because, let's face it... we all fake it now and again... and im the queen ;) )

maybe cushings HAS caused me to not want to have sex, and that really doesnt bother me. it used to be that i couldnt go a day without it. hell, id drive 45 minutes to see my ex (while we were dating) just so i could get laid and then peace out. yeah- i learned how to shut myself off and make it unemotional. but i dont think i want to do that anymore. i KNOW i dont want to do that. it should be something beautiful and shared between people who care about one another, not just a hump and dump.

so... the way i see it... cushings killed my horomones, but maybe its a blessing in disguise that i CANT let myself fall into numbness and use sex as a coping skill.

it was sex and alcohol but... i cant drink anymore. and im not having sex so... blessing in disguise.

especially since with my last i needed that liquid courage to deal with him. and to sleep with him.

now this isnt meant to discourage the boys that if theyre not packing, sex wont be good.
and thats not to say that if you're not experienced, it wont be good.

sex should be treated as something special, and beautiful. and i really believe that LOVE is what makes it good. unless you're really drunk and just fucking around. thats good too.

but for me, now, there has to be more than just fucking around.

cushings changes things.
cushings changes you.

and i actually think it's been changing me for the better...

Monday, April 16, 2012

challenge day 16... i love my endo

*sigh* i do love my endo...

i had another meltdown today. in the car. it has just NOT been a good week/ days, anything! im sad. im angry. i feel like im breaking. i feel lost. confused... id like to see the silver lining.

and my endo confirmed what i have been saying all along- IM NOT HEALING! i should be looking and feeling a whole lot different than i really am. so he finally increased my ketocanazole, only by 200mg, but he wants to start slow with me because of all of my medical junk. so i appreciate that, especially because he knows im not patient. at all. i told him- if i dont need my adrenals, take em out. hell. take out my appendix, take out everything i dont need! he laughed and said no. removing my adrenals is going to be a last resort. :p

but whatever. if in 6 weeks im not how he wants, hes going to go at it more aggressively. thank god. im ready to START recovering.

oh, you thought i WAS recovering? haha. NOOOOOOOOOPE. im still undergoing oodles of treatment! and once the treatment WORKS, THEN i will be healing. until then... im not.

i cried in his office today. i dont think that's something he ever expected to see- since im always happy-go-lucky and all smiles when im in his office. not today. that AND i took an ativan to deal with life.

so mom took me for retail therapy.

and tomorrow is my EEG. im compltely exhausted, but im not allowed to sleep. at all. well, i am from midnight -4am bc i have to be drowsy. greeeeeeeat. i already warned my aunt that ill probably be bitchy. especially if this headache doesnt go away. and since its NOT going away, i have to call my neurologist and possibly need another shot. awesome.

eff
em
el

Sunday, April 15, 2012

extra! extra! cushings is a killer!!!

have you heard the news? CUSHINGS IS A SILENT KILLER!!!

i dont know why people dont believe me. people die from my disease all the time. it's so hard to diagnose and to treat... but wait... were just fat right? we just need to sleep and get lots of exercise right? yeah... thanks.

thats why a few months ago a guy in my support group passed away, right?

ill admit it. im scared shitless. medically speaking i shouldnt be breathing right now. i shouldnt be alive. but i am. and im not healing like im supposed to be. do you know how scary that is? the medication is KIND OF working. great. tomorrow im going to be bitching at my endo AGAIN. i want a higher dosage or i want something. i know were going to be talking about medication for my bone loss, but seriously. i have a feeling were just going to remove my adrenal glands. and that's whatever. my friend had it done and he siad it wasnt so bad. but... still. another surgery? why cant i have answers already? why cant i be fixed?

i thought my 1st surgery would fix me. nope.
then i thought, ok the 2nd surgery will do it. nope
ok, so maybe radiation... nope. well, kind of

cant there be a FIX FIX? like seriously!

these past few days have been really hard for me. ive been crying. randomly losing it. like... its been to the point where i just want to quit! or stop breathing. and just end it all. this way, no burden for my friends, family or doctors. just let it all go.

but thats not me. ill conquer this. i always do. im just really frustrated with how this is all playing out.

ive come to terms with my own mortality. if i have to have another surgery, i WILL have a will written out.

but doesnt mean i want another surgery. or to face death AGAIN...

Saturday, April 14, 2012

i survived another day

after yesterday, i really dont know how im still doing this. my head is pounding, my eyes hurt, i feel like ive been walking on air all day... everythings been spinny, i still feel like crying and im just... MISERABLE!

i just... UGH! i dont wanna keep crying, but i feel like theres so many tears taht need to fall! i woke up this morning, and i guess i had cried while i was sleeping because there was mascara on my pillow case... guess im doing laundry tomorrow.

i made it through the day, though. and i wasn't quite sure i would.

i really was on the verge of quitting, giving up, throwing in the towel. it got to a point where i just didnt see a point anymore. why keep going? i should be better already!

and i hate talking to people becuase i feel like a burden. i mean, seriously, who wants to deal with the sick girl?

and dont spend time with me out of pity. spend time with me because you actually want to. not because you feel sorry for me. seriously. if i need pity or someone to feel sorry for me, i have a dog. and hell pay attention to me. so bite me.

arrrrrrrggggggggghhhhhhhhhhhhh

cushings suuuuuuuuuuuccccccccccccckkkkkkkkkkkksssssssss

day 14... the official mascot...

one of the options for this blog challenge is to choose a mascot for your disease and describe it.

i don't have just one. i came up with a few... mostly because they represent different aspects...

the phoenix. the phoenix always rises from the ashes. the phoenix is burned and then reborn from its own ashes... and i think thats me. ive been burned, beaten torn down... but i keep on rising. this disease has forced a rebirth of myself. the phoenix doesn't rely on other ways or other people to reincarnate itself, to come back as something completely different. no, the phoenix comes back as a better version of itself... and id like to think that, im like that. im not allowing others to turn me into something. im not allowing this disease to turn me into something... even though it has the ability to turn me into a monster, i refuse to let it. im going to be stronger, and more beautiful than i was before. im a phoenix, watch me rise.

and then, there's the unicorn. "The Unicorn is the only fabulous beast conceived not out of human fear but as the sole single creation of mankind’s fertile, positive and ever hopeful imagination, a legendary creature whose power is exceeded only by its mystery. Fierce yet good, a symbol of strength, endurance, agility, perseverance, wisdom and playfulness, Unicorns are selfless yet solitary, a wild and untamable animal symbol of purity, hope, love and majesty, grace, finesse, and unconquerable nature."- Mayer, Marianna. The Unicorn and the Lake (1961) and Odell Shepard, The Lore of the Unicorn. (1930)
  how dead on is that? maybe that's why ive always had such an infatuation with unicorns. as a child, my dad would always bring me unicorns when he was away for work. my room was done up with unicorns, i had unicorn books... they're so beautiful, peaceful, and possess such a wonderful magic about them... and i am the unicorn. all of those traits completely describe who i am. This disease has forced me to 'be the unicorn', if you will. just one more reason im going to beat this. it's who i am. and that's ok.

and then i have a mascot with my friend, more like two. we are the wolf and the raven. they go into battle together, one watching out for the other, and they survive together. and that's exactly what we plan on doing, it's what we are doing. we fight together, we survive together. failure is NOT an option for either one of us.


the more i think of it, i think the unicorn is more my mascot than anything else... so now i need to create that mascot in picture form...

and here she is. my cushiecorn

Friday, April 13, 2012

and now im all alone again...

i just spent a good hour crying my eyes out. and this wasnt just a cry where tears fell... it was a good, heartwrenching, choking, sobbing cry. i left makeup on my brothers white t-shirt because i was such a wreck.

im not quite sure how i made it home, because i completely lost it in the car. i think i would have been fine and have kept everything bottled up had that damn superchick song started to play. "stand in the rain". it's an awesome song... and totally me. and how ive been feeling. and i broke. i finally broke. me. the strong one. the one who's got everything under control and who pisses sunshine... broke. completely.

thank god my brother was up. i was hoping he would be. i just lost it on him. and cried and cried. and he just held me. tight. and the harder i cried, the stronger his grip got. he cant stand to see me cry. it hurts him. especially when i told him what was wrong.

im sick of being sick.
i wanna be better already
i should be better already
i cant see.
i want to be able to see damnit!
im tired of the headaches
i hate crying.
i want the pain to end
i want to be happy
i want my life back
i want any life back
i want to be healthy enough to work
i miss having money
i miss being able to do things
i hate feeling alone.
i am alone

i am alone.

i dont wanna hear, 'im here for you' or 'jesus is there' or anything. you can TRY and comfort me, but you can't. you can't fix this. no one can.

im not being negative, its the fucking truth.

there's a handful of people that i could probably spend time with and not feel alone. because they get it.

but most dont get it. and im glad you dont. because i wouldnt wish this on anyone.

but im alone. i feel alone. i can be surrounded by people, but feel completely alone.

i feel left behind. forgotten about. like i dont exist.
and that's not a fun feeling. not fun at all.

my friends are having fun. living their lives. getting married. having babies. doing couples things... and im happy for them but... do i have to be left behind? or made to feel like crap? im sure its not intentional. but its happening. there are no phone calls. no plans to hang out. no text messages.

unless i do it. i make the phone calls. send the texts. the cards. try and make plans. me. i do it. i feel like the only way some of these friendships are going to survive, is if i keep them going. if i keep putting forth the effort.

and while i say i hate feeling alone, sometimes i think it's better. im not a burden on anyone. no one has to deal with my sickness. no one has to deal with me. and maybe that's a good thing. i know i can survive this on my own, but it'd be nice feeling like someone is in my corner. and you can say you're in my corner, and im sure some of you are but... im still alone.

i hate feeling like im being left in the dust. its like the world moved on without me... and it's true. the world didnt stop because i got sick, itd just be nice to feel like people were there for me. and i didnt have to be scared all the time, all by myself. because thats how it feels. all the time. i feel like im being lied to. and it sucks

i guess what brought this all on tonight was my therapy session, and spending time with my nephews tonight. theyre so beautiful. and i just rocked charlie and thought, you're gonna be a good mom one day. and then i thought, oh wait... you can't have kids. awesome.

i miss having that one person i can call, day or night, night or day, and know they'll be there. whether it be someone to listen, someone to talk, or someone to just be on the other line and let me cry. but that person, seems to have disappeared...

this journey is such an emotional roller coaster. i want to be cured!

there's so much going through my head right now.

i cant even go to my freaking high school reunion. why? ill probably punch someone in the face. im not anywhere close to where i wanted to be in life. i dont want people looking at me and judging me and talking about me. i dont want high school all over again. i dont want to be hurt. i dont need to be surrounded by a ton of people and again feel completely alone. if i had someone to go with me, i might go but at this point... i dont and i dont think id feel comfortable. so why bother.

and then theres a wedding in october. and of course im going. but im allowed to bring someone. seriously? do i even know anyone that id want there? well... yeah. i do but... idk

i just feel like my whole world is in shambles right now. and im always so positive. i think im tired of that responsibilty.

supergirl is ready to hang up her cape. anyone care to save me?

challenge day 13...headache much?!

headache much?

one of the many blessings of this wonderful disease...

and we dont just get headaches... no no. we get PAIN that shoots into our eyes, the base of our skull, our temples, our jaw, our ears...

so maybe FACEACHE is a better word. oh it sucks, suckity suck suck sucks!! im having one right now. and its driving me crazy. its not as bad as they usually are.  but the one right now, is shooting from my right eye, down my head, into my ear, and into my neck. and my oh my is this one a pain!

i especially love that i cant take my migraine medication for it, because apparently fiurocet will just make things worse because of the types of headaches i get- damn occipital nerve! oh well

if i could go back for another injection, i would. hopefully the pain subsides so when i call monday we can schedule the second one.

and maybe my eeg that im having on tuesday will give some more answers. i am tired of taking drugs but... maybe theyll have one to fix me.

who knows.

i had therapy today, and that was good. i love talking to her. she makes everything better.

ok. i need some drugs. my head is spinning.

Thursday, April 12, 2012

challenge day 12... happy anniversary?

today marks the 1 year of my 2nd surgery, that glorious TSS- transphenoidal sinus surgery- that was supposed to fix it all...

it didnt.

my surgeon wasnt able to remove the whole thing. the first surgeon cut it funny and said he had gotten it all, when he didnt. the tumor then grew down into my sinus cavity and wrapped around my carotid artery. most tumors are circles, which make them easier to remove. but alas, surgeon 1 effed it up. surgeon 2 did all he could. he said he left part of it in, because if he had pulled on it wrong, i would have lost all facial movement. he said i had been through enough, a botched first surgery, losing sight in my right eye... so he left part of it in.

which meant that i was going to need radiation. lovely.

so today... is kind of a rough one for me. if i hadnt had already made plans with the wonderful, miss ivory... i would have spent the day in the dark, in bed, self-medicating myself and sleeping. while my dog slept in his little corner. i think he likes the days i dont feel up to doing anything because that means he has company.

but i pushed the sadness aside. i was really angry though. really really REALLY. like i was ready to throw things. break things. scream... and i did scream. i banged the cabinet doors a bit. took a shower and went shopping.

i may not have much money but... sales and retail therapy seem to do the trick.

and then i went to the movies and watched Mirror, Mirror... fantabulous movie! i recommend it to EVERYONE. lots of laughter. and we talked back to the movie, which is always fun. followed by a race to the bathroom and lunch at the olive garden.

today was much needed, and much overdue. and its nice spending time with my 'twin'. someone who i can not speak to for ages, and when we get together its like we were never apart. its nice to have family back. and we both thoroughly enjoy word vomit. and were both brutally honest, but were not mean about it. its kinda- this is how it is. take it or leave it, but we also have big hearts and care for people. seriously- i hope our friendship continues for ages and that we become as close as we once were. its nice spending time with someone that i dont want to punch in the face, and who genuinely care about me, my family, etc. and we care about her.

so... my anniversary started out shitty, but ended on a positive note.

i still hate cushings though.
hate it

Wednesday, April 11, 2012

challenge day 11, again...

sometimes... i feel like i care too much

or like the fact that i care annoys some people

maybe im just uberemotional today. maybe its because everything has been building and building and building and its just ready to explode...

i really thought i was stronger than this, but im on the brink of tears.

i dont know why i take on what i do, because i probably shouldnt. but i cant help it. caring is in my nature.

its been a rough few years.

tomorrow marks 1 year post 2nd surgery, and im still not fixed. i did write out my anniversary cards for my surgeons, because that's what i do. they'll be surprised, well... maybe. dr moshel and dr rosen both think im a blast in a glass because i always try and find the good in everything and make everything a positive experience.

but its bittersweet. like... cant i be better now? couldnt that have been the cure? i was so convinced that was going to be it... the cure. and id finally be able to heal and get on the road to recovery, go back to work, etc...

but no... couldnt get the whole tumor because it had wrapped itself around the carotid artery. hence, my needing radiation last july. and that MAY have worked. who the hell knows. and they put me on medication, which lowered my cortisol but isnt working the way it was supposed to...

so yes. tomorrow is going to be bittersweet. i guess ive had alot on my mind. i think i overworked myself for today. today was my occipital nerve block- they injected a steroid and lidacane into my occipital nerve (in my brain) to decrease the swelling and the pain. it wasnt bad at all. ok, yeah it kinda hurt. but... whatever. i had it done. i guess i was expecting more from it? occipital neuraligia is what i was diagnosed with. it causes headaches, eye pain, swelling, etc.

but there are other tests they wanna run on me too. next week im having an EEG done, and then he wants to admit me for an overnight EEG. so that should be fun. i actually wont mind the time in the hospital, i kinda like it there. maybe that's weird, but, i guess its because ive spent so much time in them that i feel safer there. plus i like meeting new people and making friends with my nurses. he wants to see if im having seizures at night and idk what else hes testing me for. i dont really understanad the whole thing. but, it's a day to spend with my aunt so... at least thats a bonus.

and then there's the bone loss in my spine. were learning more about that on tuesday. not something im excited about. im sure it's cushings related... its ALLLLLLLLLLLLL cushings related. the dictation i got from my neurologist says blah blah cushings, blah blah cushings, cushings blah blah blah... etc etc cushings etc. so that's good.

im just siiiiiiiiiiiiiiiiick of being sick!

oh well.

im up and down. and my head hurts and ive been scared.

and my moms ok. but still, everything we dealt with was scary as hell.
its like we cant get a break

and my friends ok. which made me burst into tears.

i hope things start looking up. for everyone.

its hard being strong all the time...

and seeing the reality of life, of friendships... because you THINK you know someone and you THINK they care when in actuality, if it's not about them... you don't matter. and that's fine. because i do matter. and if they cant see it, bye bye. i dont need assholes in my life. at all. or people who like to make me feel bad, or who get off making others feel bad because theyre that insecure with themselves.

ill always be the one to give the shirt off my back if it would help someone, but... not everyone. not anymore. i need my shirt.

*after a while you just smile and hope is just a fairy tale*

challenge day 11... !@#$%^

im ready to punch someone in the face. really hard.

not for any particular reason, i had a fairly good day today. but lately ive been really dizzy and lightheaded. idk. maybe i worked myself up about the injection today. or maybe my sugar was too high or too low.

that shot sucked. it burned like a mothertrucker. and now im all swollen. im not in pain, i just feel like complete and utter garbage.

but i did enjoy my time with csilla. and the sushi was good. and the little surprise i found my friend made me laugh...

and then we got lost. multiple times on the way home. but we laughed alot. and sang car karaoke. and became infected with bieber fever :)

Tuesday, April 10, 2012

challenge day 10... my dress!

today's going to be short and sweet.

one of my favorite dresses, one that i havent been able to wear since august 2010 bc of my surgery... fits. it doesnt fit like it used to, but it fits. and looked good. so good that i wore it out today :)

and i have enough hair on my head that i can curl it without any scars showing, or patches of hair missing.

brighter days are coming <3

now... to figure out these stomach issues, the brain pain and the eye junk :)

Monday, April 9, 2012

challenge day 9... ill sleep when im dead

my original post was too personal for me to announce to the world. we'll save that for another day, maybe.

so today, let's talk about sleep.... or lack thereof.

im either an insomniac, or i want to sleep all day.

i seem to get my best sleep during the day. at night i deal with panic attacks, night sweats, night terrors, peeing, excessive thirst... you name it, it happens.

right now im ready to fall asleep. AND i had a GINORMOUS iced coffee from DD (they're 99 cents all month!!)

it really sucks. especially bc at night ill lose feeling in different parts of my body. or ill wake up and think im completely blind because i open the wrong eye.

but,... im awake for my drunk friends bc theyll be getting home from the bar and ill still be awake. so they have someone to talk to.

i dont even remember what else i wanted to write about... hmm...

i do have to have a sleep deprivation EEG soon, overnight in the hospital. im not allowed to sleep.... no big for me! i rarely sleep. haha.

happy day 9

Sunday, April 8, 2012

challenge day 8...i have been reborn

HAPPY CUSHINGS AWARENESS DAY!!!

HAPPY EASTER!!!

hmm... this year they coincide...

coincidence? maybe... but... im gonna take it a step further...

'On the third day he rose again from the dead'.

On my third surgery, they said i would be ok.

Jesus promised us a life of happiness, love, strength, courage and smiles... But we have to BELIEVE. He never said that we wouldn't have to go through trials and tribulations. In fact, I believe the trials and tribulations help strengthen us and make us appreciate things more.

I could sit here and look at my disease as a curse and the worst thing that has ever happened to me... but I don't. Why should I?
ok. so they shaved my head.
they hacked my skull
made me blind in one eye
i gained all this weight
my memory sucks
i trip over my words
i have headaches that can last for days
i get out of breath
my bones are wearing away
i may have occipital neuralgia
i have ptsd, anxiety and panic disorder
im in menopause
i may never be able to have kids
im stuck in a body i dont like
i have days (like today) where i just want to spend the day throwing up
i barely sleep
i have hot flashes like whoa
and if im not sweating like a whore in church, im freezing

but...
i still smile.
i still have a GREAT smile
i still believe in the good of mankind
i still have sight in one eye
i still laugh
i still make bracelets
i still love
i still try and make other people happy
i still encourage others

ive learned that by still maintaining that part of myself- the good- that it makes me stronger.

sure, i could let all of that bad stuff make me miserable. and i can sit around playing the victim card but... im not a victim. maybe a victim of idiot doctors, and poor decisions but... im a survivor. ive been given another chance at life, and you best believe im going to make the most of it.

Saturday, April 7, 2012

challenge day 7... let the music heal your soul...

let the music heal your soul, let the music take control...

there's a song for every feeling anyone could ever feel. ever.

make a playlist.
make a few playlists.
songs that will encourage you
songs that will make you smile
songs that will get you angry
songs that will help you cry.

do it.

or write a song.
make up some lyrics.
make silly lyrics
and dance
dance out your anger
dance out your happiness
let it go.

let go laughing.

ive got lots of playlists.
ive got friends who hear songs that make them think of me
i have a beautiful friend who wrote me a song
i have a beautiful friend who made me a cd.

it helps. alot.

encouragement songs:
courage- orianthi featuring lacey of flyleaf
stand in the rain- superchick
wind beneath my wings- bette midler
hero- whitney houston
smile- kirk franklin
make it out alive- hanson

happy songs:
the happy song- delirious
mmmbop- hanson
bye bye bye- nsync
radar- britney spears
everybody- backstreet boys
lookin for a good time- lady antebellum

cry:
why- jason aldean
whiskey lullaby- brad paisley
if you're reading this- tim mcgraw
via dolorosa- sandi patty (i think)

angry:
jealousy- brokencyde
im not ok- my chemical romance

just a few suggestions.
and then there's 'Nicole's Song'... which is everything all in one, minus the angry. it makes me smile, it makes me cry... and here's her performing it on TV... tonight ill be watching her sing it live to a few hundred people as she opens for Sully Erna at The Sherman Theatre tonight:

http://www.youtube.com/watch?v=buSHeI4E5Aw&feature=g-user-u&context=G2d87fdbUCGXQYbcTJ33b-AK3WFmXawnA2tfF5CI_xy_hPsM-ROak

i use music in every aspect in my life. while i was in the hospital, i became addicted to danny gokey. his music just speaks to me.
and of course... hanson.
but then again... hanson is just perfect in every aspect :)

hey... they did give me a get well soon guitar ;)
if i hadnt been struck with this horrible disease, id never have met hanson, and id never have met lissa.

so thank you, cushings, for making my dreams come true :)



the boys signing my guitar


that's lissa on the microphone, and rock giving me my awesome guitar

thats me, after getting the awesome guitar , November 19 2010







Friday, April 6, 2012

challenge day 6. nothing 'common' about it!

not only does cushings disease suck- the fatigue, nausea, weight gain, headaches, brain fog, dizzy spells, memory loss, pins and needles, hot and cold flashes, eye pain, leg pain, joint pain, bone loss, hair loss, stria, hair in strange places, thin skin, etc. etc. etc...

try having a 'common cold'

ha. common.... common my ass.

ive been fighting off a cold since... hmm...sunday? it's now friday. now, for a non-cushie, this cold would be on its way out... but no, no. not me. today i feel worse than i did when it first started. i still cant breathe through my nose, im pukey, got that post nasal drip thing, cant stop running to the bathroom, my head is pounding, im freezing... or im sweating... oh what a great day.

see... when you have cushings, your immune system is compromised. so anything that a non-cush would get, we get 1,000 times worse.

is it something we get used to? unfortunately, yes. but that doesnt mean that we like it. or that it's ok. or that it doesn't suck.

id love to just take a shot of tylenol cold and sinus and go about my day, but i cant. we have to be extremely careful with the medications we ingest.

i cant just take something, without consulting a jillion people.

case in point: my neurologist wants to put me on topomax. the endo said ok, the hematologist said ok, but now i have to wait to see what my eye specialist says. he's not in until monday, so ill just have to wait. one of the side effects is weight loss- so im hoping that happens lol. but the other side effects are pins and needles and difficulty forming words/sentences... which i already have difficulty with...

probably why id rather text/ type/email instead of an actual conversation with someone...

and then there's the injection the neurologist wants me to have in my skull. it's: ropivicane and depomedrol. and i have an occipital nerve blockage so... that's supposed to help. my endo said ok. my hematologist said ok... im just waiting for the eye specialist. again. but he's not in until monday.

having cushings makes it difficult to treat every day sicknesses/allergies/etc.

once you're diagnosed, you're like a guinea pig forever. which is ok. guinea pigs are cute. and they snort... which i do if i laugh really hard...

Thursday, April 5, 2012

1 dr, 2 dr, 3 dr 4.... challenge day 5

how many doctors does it take to treat THIS GIRL and her crazy cushie life?

hmmm

1 pcp
1 endocrinolist
1 otolaryngologist
1 hematologist
1 radiology oncologist
1 neurosurgeon
1 neurologist
1 neuroopthamologist
1 gi specialist
1 gyencologist
1 cardivascular guy
1 pscyhotherapist
1 psychiatrist
3 pharmacists
1 incredible sister nurse

add in
2 incredible parents
1 strong family
2 of lifes most incredible siblings
some good friends
and a wonderful dog.

yep... cant have just one...

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
awesome
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.'
yay
'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.
assholes

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.

awesome.

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.

what
the
fuck

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.

awesome.

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.
awesome.

i forgot.
its all in my head.

challenge day 3... 'the revolution'

'you can easily lower your cortisol level by eating right, exercise and getting enough sleep'

gee thanks tv show 'the revolution'. why didn't i think about that before? of course! i must have been overeating those 2 salads a day, and the 3 yogurts a day... my 2 hour daily workouts must not have been enough! how silly of me... and my 7-8 hours of sleep a night... i guess i should have quit my job and slept 10-12 hours... right?

fucking morons. are you serious? yeah. i get it. for a NORMAL person, lowering cortisol is simple. but for me? not so much.

i asked a doctor about the hump on the back of my neck and do you know what she said? oh, you're just fat. you need plastic surgery.

PLASTIC SURGERY?! ARE YOU FUCKING KIDDING ME RIGHT NOW!?
so i listened. i tried to diet harder, worked out more... and NOTHING!!! i wasnt losing weight. i wasnt gaining weight... and then i gained a ton! how? i didnt eat more. i ate less. i didnt work out less, i worked out more.

dun dun dunnnnnnnn......... i have cushings disease! thanks for playing. seriously. no one wanted to listen to me about the headaches. no one wanted to listen about the brain fog and forgetfulness. no one wanted to hear me when i said i was eating healthy... no no. nicole... you're crazy. it's all in your head...

turns out? IT WAS ALL IN MY HEAD! i had a pituitary tumor! duh nah nahhhhhh believe me now?!

of course, after i was FINALLY diagnosed and had my head hacked open, people started to believe me. cheese and rice. im glad i had to have emergency surgery and lose my sight for someone to finally listen to me.

cushings disease is a rare, life-threatening disease.... a silent killer.
it causes your body to produce 10xs or more of the body's natural steroid cortisol.
it causes weight gain. not just weight gain. it makes you FAT
your body will become disfigured
a moon face
disgusting stria
mood swings
depression
anxiety
ptsd
crying spells
early menopause
fatigue
pins and needles
losing feeling in body parts
feeling alone
scared
like you ARE crazy because no one listens
a hatred for yourself
a hatred for others
annoyance at the medical field.

and the worst one?

you dont like, and dont recognize the person you see in the mirror.

Wednesday, April 4, 2012

fanfuckingtastic. challenge 2? or just a basketcase

ready to scream. ready to hit someone. ready to cry. ready to explode.

yup. back to the poconos.

i need to be healthy. i need my own place.

i need the anxiety to end.

i need the attacks to stop.

i need to feel like i belong. somewhere. anywhere.

sometimes i think i feel like i belong when im all alone. theres no one to judge me. no one to make me feel bad about myself. just me. and thats all i need

because some days, most days, i feel like i dont need anyone. and that id be better off without anyone. because then i wouldnt be burdening them. no one would have to worry. no one would have to care. itd just be me. and my dog. and thats it.

one day.

today, though... i just kind of feel like giving up. like quitting. like i hate everything. like i just dont feel like existing anymore. and i hate that feeling.

maybe its because i feel like i just keep getting more and more bad news. or maybe its because i feel like crap. or maybe its because jason is going under the knife. or maybe its because next week will be one year from my 2nd surgery and im still not healed. maybe its because my mom is sick. maybe its because im tired of being lied to. maybe its because im tired of being a friend to so many people. maybe its because im tired of feeling used, and letting people walk all over me.

maybe its because i spend time with negative people. maybe its becuase these 'friends' i have.... some days feel more like enemies. or people i just want to hit.

maybe its because of everything ive been through, experienced and am dealing with. maybe im tired of being so strong all the time. maybe its because im tired of being depended on. maybe its because im sick of limitations. maybe its because i miss being me. maybe its because i just want to run and keep on running. just go. leave. and never look back. forget everyone and everything. forget every doctor, every test, forget people, forget that im sick. forget that i need people. forget that bad things exist. pretend to live in a world where its all rainbows and butterflies- there is no disease, no sadness, no sickness no war, no anger, no high gas prices.... a place where people are free to love and be loved and feel loved. a place where people can laugh and not feel like the world is judging them or that everyone is against them.

a place where its ok to cry. to be angry. to smile. to laugh. to be different. to be 'disabled' and not be looked at like a freak show. to not feel forgotten about. to not BE forgotten about. a place where there is no violence. a place where forever means forever. a place where i dont have to hold up the world all the time. a place where i can collapse into my best friends arms and just let loose, and not feel like im a burden to be around. because thats how i feel. like im not good enough. that ill never be good enough. that im not the strong person everyone sees. my heart is broken. i wear my smile well. i fake it. im good at that, ask any of my exes. but i hurt. and i feel so let down, by so many people. i give my heart freely, i trust, and i allow people to take up space. i allow myself to care about people.

you know whats sad? i would love to crumble in my best friends arms... but the truth is? i dont have a best friend. i dont. i have people who say im their best friend, but im not. because where are they? when things get rough, they get going.

so im done. i just want to quit. and to be done with everything. im nowhere near where i want to be in life. i cant work. i cant see. im not in love. i dont even know if i ever want to be in love again.

so many people tell me they care, and they love me and they're here for me... but i feel so completely alone, and scared and... i just want to quit.

i know there are people who care. and they show it. and i dont mean to sound like i dont appreciate them... i just... this isnt the life i planned. or the life i wanted.

maybe i need to relive everything. and just cry. because ive been crying off and on for about 3 hours now. and im trying to hide it, as well as i can. thank god tonight was the one tree hill series finale. it was a good excuse to let the tears fall.

thanks cushings. for... well... showing me who really cares. and who doesnt. and for this awful feeling of being alone.

no one can fight this battle for me. some say theyre fighting it with me but... most days its hard to see that.

and i guess thats why i like the beach. its me. the sand. and the waves. and nothing else matters. i dont care whos around or who's not around. i dont care whose let me down. its me. the ocean. and thats it. and thats all i need.

sometimes i feel like id like to just walk into the ocean, succumb to the waves and let it swallow me.
but i dont
i cant

but id like to.

some days id like to imagine what itd be like if i didnt exist. how much better off people would be without me because...
most days?
i feel like i dont exist to them anyway...

Cushings Awareness Challenge: day 1

Since I didnt have access to a computer... I'm taking the challenge now. And will complete each task daily.

april 8th is cushings awareness day...

legggoooooooo!!!!!!!!!

day 1: 5 Challenges & 5 Small Victories. 
      challenges... there have been plenty! i lost sight in my right eye. it'll never come back. ever. how'd i lose my sight? my first surgeon did the surgery WRONG. but whatever. my depth perception sucks and ill get crazy pain in my eye, even though i can't see out of it. it's annoying as hell. walking into things, not seeing things coming at me and freaking out... i try to tell people that i only see half the ugly in the world, but it doesnt make not being able to see any easier. and then everyone asks me, you really cant see? no dumbass. im making this up. seriously?!
    
challenge 2: feeling comfortable in my own skin. i was never superskinny, but i never saw myself becoming this big. i gained 70lbs in a month. A MONTH!!! and i was eating yogurt and salads and working out 2-3 hours a day! A DAY! not 2-3 times a week... i was like a health nut. and nothing, NOTHING changed. so i became this blob. a blob of yuck. i felt so ugly. and so... gross. like... ew. i hated who i saw in the mirror... to the point where i would avoid them. and anyone who knew me pre-cushings... knew that wasn't me. id always STOP in front of a mirror to check myself. but then cushings struck me down. and i hated who i saw. and somedays? i still do.
   
challenge 3: feeling like the world went on without me. and ya know what? they did. i guess i shouldn't have expected people to understand or to really care... it was like... no one wanted to be with the sick girl. no one wanted to hang out because i couldnt do what i used to. i couldnt just take random road trips to the beach, no more amusement parks, no more running to the mall or going out to eat. everything took/ still takes, so much out of me. i get tired. i get weak. i get frustrated. i cant handle crowds. so, instead of people working with me... they left me. ALOT of them left me. even you. you reading this. you may think you didnt, but you did. every single one of my friends did. im not the same girl i once was. cushings changed me. and not everyone could handle that. i was no longer the life of the party. and even when people did come around... i never felt more alone than i do now...

challenge 4: the 'no one wants to love a sick girl' complex. man... that complex SUCKS. no one understood, and no one will ever understand, unless they get struck with this godawful disease. i felt so alone, and sometimes i still do. i couldnt/cant work. i cant provide for myself. i cant run around with my friends. i have limits... i NEVER had limits. i was a risk taker... now the little things scare me. some days im afraid to leave my house. and id always be the first one to run! i had/have/trying not to have this complex where i feel like such a burden to everyone. which is why i stopped trying to make plans with people. i always here: lets hang out. let's get together. i miss you. i get it.... but when it comes down to it- no one wants to. i feel like id just get in their way. and when they told me know, and i would go out- i saw their looks of frustration and disgust when id get tired. and i wouldnt want to do everything they did. i cant help it. i didnt ask for this. what the fuck? if you cant handle me at my worst, then why the hell do you deserve to be in my life as i get better? it was let down after let down, heartbreak after heartbreak... and i fought to stay positive. i FOUGHT to keep these friendships alive... but then learned how to say FUCK IT and let go. im a sick girl, but im also an amazing girl. IM A SURVIVOR and IM NOT WORTHLESS. IM WORTH IT. i just wish more of my 'best friends forever' 'through thick and thin' would see that...

challenge 5: staying positive. i lost my sight. i got fat. i trusted the wrong people. i let others hurt me. i felt/ feel like a burden. i lost a big chunk of who i am. im angry. im depressed. im anxious. i have panic attacks. there are days i cant get out of bed or lift my head off the pillow. and then if i have a bad day, im made to feel guilty for getting upset. IM ALLOWED TO BE ANGRY DAMNIT! but godforbid i show it!! so no... im not allowed to voice my anger or be negative... which isnt necessarily a bad thing because im always positive. i love seeing the good in people and in life. i had people YELLING at me because i had no right to be angry. NO RIGHT? are you fucking kidding me?! yeah. ok. so that made me feel worse about myself. but... on the days i feel like giving up, i remember that i dont have it that bad. sure, i could die any second but... i have to fight. and ill continue to fight. maybe it wasnt as hard as i thought it would be but... try to walk a mile in my shoes... i really dont think that many people could be as strong as i am. i dont care if that sounds conceited either. some days are harder than others but.... i find that continuing to do my random acts of kindness, and just continuing to be nice... helps. :)

5 small victories
1. the first time i bathed myself... after my first surgery my mom and sister had to help me shower... talk about humbling... i was having a superawful bad day and started throwing things, almost punched a hole in the door and said fuck it. i stormed into the bathroom slammed the door, threw my shower chair and took a shower. i lathered myself in victorias secret body wash and cried... and i gently washed my hair and i cried and cried and cried. kind of like im doing now. it hurts to remember everything ive been through and what im still fighting to go through... but i have to keep fighting. i cant quit...

2. feeding myself. i couldnt open my jaw bc the dr cut through it. i couldnt see to feed myself. i couldnt hold a spoon. i just didnt want to eat. and when the nurse force fed me i spit it right back at her. my dad would feed me. my mom. my sister. it was quite depressing. and i hated it. but then... i said fuck it. i made a mess of myself.... of course. all i wanted was tomato soup... that shit burns on bare skin... (surgery was in the summer, and put me into menopause so i was always hot and in tank tops and shorts) thank god for tide-to-go.

3.making taco dip. i freaking love that stuff. and would crave it. so i made it. i made a mess. got it in my cleavage, the table, the floor... everywhere but the pan... but i did it. my mom put me in the oven, but i did it.

4. walking without a walker. no depth perception. dizzy all the time. broken foot. no energy. difficulty breathing... i couldnt go to the bathroom without my walker. couldnt make it from the couch to the kitchen. or the bed to the bedroom door. nope... had to have it. people stared at me. looked at me funny. i guess because im so young. and my head was shaved... why not stare at the freakshow right? smh. not only was i embarrassed to be walking with this thing... it was a pain in the ass to lug around.

5.driving by myself. wow. i got lost but... it felt so good to be behind the wheel of MY car. my happy place. granted, i only drove to physical therapy, which was across the street from my dads job but... I DID IT. ME. BY MYSELF.

part of me doesnt know if i can do this challenge... april 12th = 1 year post 2nd surgery... and im still not where i want to be. so bring on the emotions. bring on the tears... its gonna be a bumpy ride... maybe bumpier than i thought...