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Monday, December 26, 2011

where oh where...

warning: very angry. annoyed. miserable. happy. emotional rollercoaster ahead.

i am really starting to get sick of fucking life. i really am. im tired of everything. of people, of situations, of negativity, of liars, of being sick, etc. seriously. and im tired of feeling like im alone. like i dont belong anywhere. i dont feel like i fit in. hell, i even feel like a stranger in my own home somedays. its like, what the fuck is the point of existing or being around, when im by myself. ive grown accustomed to being alone, and its like, being around people is starting to get on my nerves. sure, i get annoyed bc i feel so COMPLETELY abandoned by my 'friends' who, id like to say a BIG FUCK YOU to :) i love being 'good enough' when it's convenient for you, but seriously, i dont need you. guess i never really did.
so anyway, since im alone all the time, and feel alone, whats the point in being around people? so then when people are around, i feel like i wanna punch them or tell them to jump off a bridge. why? why not? who knows, maybe it's the hormones or lack of hormones talking, or maybe its too much sugar, but im so fucking angry. and im snappy... and snapping, at everyone. even those who dont deserve it. i need to take up boxing, or something, to get out all of this aggression. there's gotta be an easier way than feeling like this. there has to be.

yesterday was christmas, and it was nice. annie came home joe was home... me n him were up crazy early because he had to go to work, so he woke everyone else up... it was kinda funny... we're all adults and we're up at the asscrack of dawn because santa came to visit. being older, i know that it's not about presents, even though ive always known that. my parents brought us up knowing that it's about love, family and the birth of Christ. i never thought the holidays would depress me, though. like... super depressing. all i wanted to do yesterday was curl up into a ball and hide away. just cry and shut myself off from the rest of the world. but i didn't. and i kinda regret not doing that. even though, all of us going to see WarHorse was a good excuse to cry... talk about emotions... it was a good movie though. idk. im a wreck and im starting to even annoy myself. this whole snapping at people needs to stop, but it's like i can't stop. and it sucks. oh right, depressing. yeah... idk. there's just so much going through my mind right now... love, love lost, brokenness, sickness, heartache, healing, friends, lack of friends, disappointment in people...

im really disappointed in those who claimed they'd be there 'forever'. really? where are you now? cause as far as i can tell, you're not here. and im no longer going to be the one to chase you or try and hold our friendship together. the phone works both ways. friendship is supposed to be a two-way street and im tired of walking it alone. and you can say you're there. and blah blah blah, but when it comes down to it, you're not. and i can't even believe ive allowed myself to be hurt so much by people. im so completely let down, and it's disgusting. never in a million years would i have thought that you would have turned out to be this way. but you did. and it makes me want to throw up. but then... the more you let me down, the easier it's going to be to let you go. why? well, honestly, what do i have to hold onto? you're making the end of this far too easy. and it's really quite sad... because if a friendship is so easy to end... was it ever so real to begin with?

im starting to question everything now... the only thing i dont question is my faith, which im thankful to have because it really pulls me through some of the worst times, i just have to remember to focus on it and to find it and to pull it out when i need to. like today. but im struggling. and i dont like that. and all i want to do is cry, cry, cry....

and i know none of this makes sense. i feel so confused and brain foggish... like... i dont know which way is up. i just wanna be away, or be me, or feel something... anything. idk. im just tired of feeling like a convenience.

which is why im deleting people out of my life. i got rid of becca last night and i dont feel bad about it. why? because she's a shitty friend. so ill be deleting more and more as the days go on. if im not important to you, there's no reason for you to be important to me. you left your mark, wrote your chapter in my book of life... and now your chapter is closed.

im even kind of sick of blogging. i think the only reason i do this some days is so i DONT cry, or maybe so i do... and then it's like... i dont have to physically voice how im feeling. someone will read it and that's all i have to do. no talking, no feeling, no nothing. just writing down everything i want to say so i dont feel like such a dipstick because ill talk too fast, or repeat myself or not remember what im saying... im really sick of not remembering. why cant i not remember stupid people? why do i remember the hurt? it's ridiculous.  i feel like if im stuck not remembering things, i should have a choice in what im not going to remember dammit!

smh. whatever. i dont even know anymore. all i know is... i wanna write you off. i could tell you how i feel, but what would be the point there? we've been down that road before... and things changed a little... but we're back to where we started. i get it. you have your own life, and maybe i served my purpose in yours. and if that's the case... don't fake it. be real.

but you can't. dont worry about hurting my feelings. because im a hell of a lot stronger than you think. ill keep going with or without you. havent you realized that yet?

oh, and if you think this is about you... it probably is.

Wednesday, December 21, 2011

Oh Christmakuh, Oh Christmakuh...

i dont know where to start. i thought i did but... idk. i had all intentions on writing happy thoughts, but now i feel like slitting my wrists... *sigh* oh well. tis the season, right?

anyway... there was a time i didn't know that i would be celebrating another christmas. i really didn't. i basically put on a good front, told people what they wanted to hear, that i was fine, while inside i was dying. i was waiting for the storm to come back... even though it never left. i was doing everything i could to try and stay positive, while inside i was ready to die. literally. i was waiting to not wake up, and every morning that i did wake up i was surprised as hell. the headaches, the dizzy spells, the nausea, the frustration, the blindness, the tremors, the hot flashes, the cold flashes, the fact that memories were fading rapidly, the chest pain, the shortness of breath, the anxiety, the fact that i was being let down by so many people: MCCYS, the girls i worked with, the girls i considered friends, guy friends, relationships- romantic and non-romantic... so much hurt. so much defeat. so much pain. so many tears i refused to cry. so many downs and not too many ups, feeling like i lost a huge part of myself, wondering if id ever get that part of me back... and i still wonder.
i find myself tearing up as i write this because there is still an insane amount of hurt inside of me, and sometimes i think ive let it all go, but it sneaks up on me and comes out of nowhere. it'd be nice if the hurt and the sorrow and the doubts and the pain would be gone for good, but that doesn't seem to be the case.

this is my second Christmas since my surgery. and i've been hurt a ton, but ive also gained alot. im happier now. im feeling better. id like to say my anxiety is less but.... i had three panic attacks last night, in a row, and felt that the world was closing in on me. i still have the aches and the pains but im not so dizzy. and im alive. so i guess that's a good thing. im pushing forward and staying positive, well, as positive as i can be... and today... today i saw why i needed to stay so positive. i was actually touched by some of my friends, and their kindness, even people i barely speak to...

there's a family in town who's in need. i dont know who they are or really anything about them, but manda is helping them. so? i put out an SOS to my facebook peeps and man oh man! the response was wonderful! ive already picked up a bag of food, more people are putting presents, clothing and food together for these kidss. Santa lives in all of us, and I love that this is happening. It makes me want to believe in people again, like maybe theyre not all so horrible, that there ARE good people in the world. it means alot that there are people who are willing to help complete strangers.

maybe i sound ungrateful for the help that ive been given, but that's not the case. i love and appreciate every single one of my friends, family, strangers, and doctors who have offered up love and support to me and my family. it means the world to me. im thankful to be alive, and to have incredible people in my life... and some days its harder than others to remember the good when there is just so much bad happening! and not just bad to me, but to my family and my friends. im tired of seeing people be taken advantage of, manipulated, hurt, lied to, etc... there's so much negativity and bad... but you would think that because it's CHRISTMAS/ HANUKKAH/ CHRISTMAKUH, that people would be a little nicer. you would think that all the hate and anger would disappear, for a little while. i guess that's another reason im touched at the outpouring of help for this family- people are being nice, they're putting others before themselves and just... idk. being good people. the world lacks good people. it really does.

idk. like i said before, there's so much hurt that sometimes it's hard to find the happy. yes, there is happy in everything, and it's always been kind of my job to pull positive out of every negative... but for some reason it's harder around the holidays. it shouldn't be, because Christmas is about family, it's about love, it's about friendship, it's about goodness, it's about a lil baby who was born to save us all... and yes, He was born and we're supposed to turn to him, but some days i wonder if He can really save me? or am i the one who has to save me from myself? some days i feel like im falling and falling and falling... but there's no one around to catch me. and i guess that's ok, because ive gotten pretty good at doing things on my own. i always have been. maybe im getting tired of it? idk. and i know im not alone and im sure whomever reads this is going to say, im here for you. and i get that. and it's nice. and it's appreciated but... you're not me. you're not living this. and you're not forgetting who you are. and sometimes forgetting how far you've come. some days, when im proud of who i am and how far ive come... i get sad because it's like, should i be this excited? does anyone REALLY care? i mean, everyone SAYS they do but... idk. maybe i need to see proof. and most of the proof ive seen... is a lack of caring. a lack of compassion. a lack of LOYALTY you fucking bitch. whoops. :) whatever. idk.

but yeah. it's nice to see that people aren't so awful. and that they see the real meaning of Christmakuh.  so yeah. happy holidays.

Tuesday, December 20, 2011

shut the eff up. please

i am really, really, REALLY getting sick of all of the negativity and bad news in the world today. and the fucking stupid people. seriously. if there's something that you don't like about your life, then do something about it. dont just sit there and bitch and complain and be all, 'woe is me'. i really dont care. i dont. i tried to care, i did care. BUT... YOU CAN CHANGE THE OUTCOME OF WHAT'S GOING ON IN YOUR LIFE! dont just sit on your ass and complain.
you're s/o is cheating- leave them
you're being talked about- so stop running your mouth
you owe people money- stop borrowing
everyone's against you- no, they're not. stop thinking so negatively
i dont feel good- go to the doctor
i dont have insurance- look into medical assistance.
im above medical assistance- sucks to be you then
i applied and am waiting- so wait it out, and if you're denied appeal it
i dont like my hair color- dye it
im ugly- no youre not
im broke- well... were all broke. this economy sucks.

like... i dont know what to say anymore. people come to me bc i tell it like it is, then get mad when i tell them what they dont want to hear... so here's a solution- DONT COME TO ME AND ASK FOR ADVICE! yall know i run my mouth and speak the truth, i cant help it. easy way to keep me from giving u my opinion... dont ask for it.

and another thing, my goodness. ever look at an ex and say, wtf was i thinking? i TOTALLY had that the other day. i THOUGHT maybe, id be sad or feel something... but all i felt was disgust. haha. no seriously, like, my stomach turned and in my head it was like, really? i wanted THAT for my future? smh. and there are so many awful things i could say about him and how he treats people and what a fucking waste of life he is but... i wont stoop to that level, kinda why i dont mention names on here. but seriously... i never had a relationship that i would call a waste of time... but i think that one might have been. i always like to try to pull something good out of every bad experience... so let's see... good... goood... hmmm... i did get a new dress... haha. and... hmm... oh yeah. i realized i dont need anyone to make me happy bc i do a good enough job of that on my own. i dont need someone to take care of me. yeah, im sick. but i have my parents and my family and my REAL friends to help me out. i dont need to be lied to, and from now on im gonna KEEP my armor on and keep the walls up. what the hell was the point of taking them down for a guy? hell, the sex wasn't even good. which should have been a red flag... especially when i wouldnt let him touch me bc the thought of him even kissing me made me wanna throw up... but no. i chose to fight it, thinking maybe it was the cushings, and i really did care... nope. i was forcing myself to. which wasn't a good idea. and even breaking up... i cried a little but, got over it within a day or so. because now i DONT have to give up my dreams for some asshole who doesn't and never did, deserve me. i feel bad for the next girl he plays. hes on a mission to marry but... will fuck around behind her back, lie, emotionally and mentally abuse, and try and make her feel worthless to make himself feel better. that's another reason it didn't work, 1. im not worthless. 2. i have my own opinions 3. no one controls me. i dont know why he thought id let him. no honey, that's not how it works.
phew. that was alot. feels good to get it out. there's probably more but, hes not worth my time.

anyhoo... today's the first day of hanukkah. and i dont really know anything about it, so im gonna make it kinda like thanksgiving, and im super thankful for the awesome people in my life. and im especially thankful that Jenn and I are as close as we are again. the situation that brought us together absolutely sucks, but it's nice to have my girl back and to laugh so much and feel so completely NOT alone. no, she doesn't have cushings and she's not medically retarded... but it's weird. its like im back to OLD nicci, well, sort of. its fun. so yay :) and were totally going to be reaking havoc on cape may in a few weeks... holla!

ok, so this blog was supposed to be a bitch fest, and im done bitching :) have a great day!



meet me underneath the mistletoe <3

Friday, December 16, 2011

apparently not...

so... i had written this LONG LONG blog, about my fears and my anger and what ive been experiencing... i even wrote out every little thing i wanted to say to dbag... BUT... my plug fell out of my computer! :( and i dont know how to recover the blog or the word doc that i had written... smh. but... maybe that's God's way of saying, the world doesn't need to know what a complete and utter shitbrick he is. I did feel alot better after writing it though, like a weight had been lifted off of my shoulders.

so what i DO remember, is that IM NOT REMEMBERING. my memory loss is pretty sucktastic as of late and i fear its getting worse. its kinda scary, but i dont know what to do about it. im on the waiting list to see a neurologist.

i dont have any anti-anxiety meds, or anti-depressants... so im trying to face this alone... alone... something i feel allllllll the damn time. i can be surrounded by the most amazing people but... i still feel like an outcast. its hard. im different now, and not everyone wants to or can accept that. i dont drink, well, i CANT drink, which is fine. it takes longer for my body to recover after a day of fun, i cant see, i get scared, i dont drive at night, i dont work, i have no money... i feel alone. i do have friends and family who do their best to make me not feel so bad, and i am having more good days than bad. but... sometimes, i still feel like crawling into a ball and cry cry cryyyyyyyyyyyyying my eyes out. sometimes it helps, sometimes it doesnt.

idk. maybe thats one of the reasons i love the shore so much. i dont get treated like im sick, i dont get talked to like im dumb, they dont get frustrated with me when i dont remember something. im sorry to whomevers reading this, if you have to repeat yourself a few times because i cant remember what you said. and im sorry that i dont remember what i say so i repeat myself. if you can't deal with it, then just dont talk to me. im never going to be the same 'normal nicci'. as my beloved chell put it, after i bawled my eyes out "you want to be normal nicole, but you're not. you never will be. YOU'RE EXTRAORDINARY. and it's ok that you dont have the energy like you used to, that you cant run around like you once did, that you get tired. we love you. we accept this. we dont think any less of you. we never will and we will always be here, no matter what. i know it's hard for you because this is your escape and you come here because no one treats you different, but maybe you need to be treated a little different so that you can help yourself. we'll never leave your side, you just need to realize your limitations so you don't get sicker'. i love her. and im sure ive heard that over and over again, but for some reason, sitting in chells living room, after getting mad a crab and jay, hearing her say those words... hit home. and she's right. that day i had hit my breaking point and tried to force myself to be ok, but i couldn't.
crab said, you always cry when  you come down here. but that's ok. because ill hug you. ill cry with you. <3 bee eff eff right there. and he did. i think part of the reason i get so emotional down there is because im constantly trying to hold it together out here. i have to be a superhero. but down there... theyre my superheroes. its nice.
my moms superwoman too, dont get me wrong. but it's different. moms are supposed to be superheroes. its in their job description, and my mom wears her cape well. my cousins dont have to be, but they are. and they always have their guards up for me. it's cute. hell, jailbait even said to me, i kept coming into your room when you were sleeping to check on you, to make sure you were ok. like seriously? who does that? other than my parents... no one. my ex didnt even do that. but i guess thats love, unconditional love. good, bad, happy, sickness, health... always.forever.nomatterwhat. im so proud to be apart of the family i have.

i could write about anger, but... that has left the building. i do kinda feel like crying, but oh well. ill be seeing jenn later and if i need to cry, i will. were getting pedi's done. and tomorrow me, jenn and her mom are getting makeovers, and then jenn and i are hittin up a club... she wants to go. and idk i guess i kinda do too? itll be interesting to see how i handle it. im not gonna let my anxiety win. i will conquer this. i will. because im a soldier. im a warrior. and i win. always.

Friday, December 2, 2011

when it rains, it pours... but why cant it rain candy?

where to begin... well... the ketocanazole seems to be working. my cortisol has been cut IN HALF. so thats a plus. and i think im looking better. which always makes me feel  better. i had a colonoscopy and an endoscopy done last week... that sucked. omg. i thought i was going to die. i literally sat in the bathroom for 4-5 hours... it was terrible. ive had 2 brain surgeries and radiation, and i honestly think that was worse! ugh. just terrible. i got the results yesterday, and the biopsies came back ok. but i do have erosive gastritis, which, i dont really know what it is. but im on protonix for it. its painful. but whatever, weve been through worse right? blech. i just googled it. its another RARE disorder... lol. always knew i was special right? haha.

i felt like garbage pretty much alllllllll last week and this week. and not just from the colon stuff. i think it had to do with the celexa the psychiatrist put me on. i was more pukey and nauceaus, not holding food down and soooooo tired and in soooo much pain. everything hurt and all i wanted to do was sleep... sleep and more sleep. i talked to my therapist about stopping it, bc id rather have random crying spells then feel like complete and utter garbage. so i stopped the celexa and i have more energy and dont feel as awful. smh. one day things will be figured out... apparently today is just not that day.

i got to spend the weekend with one of my longest, greatest friends. it was amazing! we havent seen each other in years but, we just picked up where we left off. we talked, we laughed, we took silly pictures... it was great. and we TALKED. i love spending time and talking to Tris, she's one of the FEW who i feel will always be there, who doesnt judge me, and kinda gets it <3 love u girl! saturday was a superfantastic day... though when she left i fell right to sleep because i was exhausted.

sunday we (mom, my brother and sister) went to the cemetery to visit grandpa, grandma and his family. this may sound morbid but... i love walking through the cemetery. walking and singing... which to some may sound weird, but i like to sing to the dead. idk. to me it's comforting. i even cleaned off some of the stones that had weeds growing over them and that were practically invisible... my mom wanted some time at grandpas grave, and my brother- greatest kid in the entire world, followed her and just wrapped his arms around her. he is the most amazing brother in the world. i dont care what anyone says- mines better than yours. end of story. just like my sister is better than yours. my siblings and my family is quite possibly the most amazing group of people anyone will ever have the pleasure of knowing. no lie. even when mom and joe yell at each other bc theyre lost in the car and trying to avoid traffic :)

i did get some rather disturbing news on sunday. my good friend... her fiance passed away Sunday morning. my heart breaks for her. she is one of the toughest, strongest people i know... and she's carrying a burden that no one should have to carry. but she's doing it. and she's staying as strong as she knows how. God bless her. he was taken wayyy too soon... i did get to spend the day with her on wednesday, which seemed to do both of us some good. i felt terrible that i cant be there for her on saturday bc ill be down the shore with my family... working on healing myself. i had such a panic attack about it too, but she said it was ok. and i think i needed her to tell me that. it was nice being together and laughing together, and releasing some anger/frustrations we were both dealing with. i love you chica <3

tuesday lori came. and that's always awesome. i love reiki. and i love her. <3 were so connected on so many levels, its insane. but beautiful.

went to philly yesterday to see my otolaryngologist- im still the poster child for transphenoidal sinus surgery. so thats cool. dont need to go back for 6 months. i even got my uncle to stop at a botanica... which i loved. botanica chango on north front street. i love going into botanicas... the smell, the atomosphere, the people... i met some awesome people in there yesterday and they totally made me feel better with everything...

right. the whole, when it rains it pours thing? yeah... mom was diagnosed with thyroid cancer... seriously, can we catch a break? like now? that'd be nice. really nice. she still is walking around like she's superwoman. trying not to show any fear and be the best mom/friend/wife/person she can be. i think that's where i get it. we don't let anything get in our way and we fight and we conquer and WE WIN. it's gonna be ok mom. promise. i tried to talk her into letting me NOT go to cape may so i could go with her to the surgeon, but of course she said no. i need to heal. so im going, in a few hours, to cape may. to be with my cousins. to walk the beach. to heal. i just need to get my ass in gear and go. it was just soooo cold when i woke up that i had a hard time getting out of the covers. had i done that, id be on my way right now.

idk how to deal with all of this. its like, one thing after the other. but were fighters, survivors. and will be ok. im glad that thyroid cancer doesn't spread, and that it's easily cured but... that C word is quite scary... hasn't my mom been through enough? she had to watchme almost die- more than once. she had to help me try and rebuild myself, my life and she's still dealing with my disease and trying to help me. because alot of times i get scared, angry and confused. and ugh. idk. its a mess and i do not approve. i just cant wait to be done with everything...

Saturday, November 19, 2011

there's no use crying over spilled milk...

ok... so how about crying over eaten mac n cheese? no seriously, THAT is what set me off this morning.

last night i went to the movies with my cousin, and my legs were throbbing during the whole thing. i hate this disease. and the man next to me wouldnt stop leaning into me and hitting his leg on mine so i had to manipulate my body to stay in a position where i wouldn't be touched. so then i ended up stiff. i was really excited to be seeing 'Breaking Dawn' last night, too... the movie was kind of a letdown, but it may not have been if i wasn't in so much pain. i brought my cousin home and just wanted to scream bc i hurt so bad. and then we got to her house and it took all my energy to get up the damn steps. i couldn't even stay with my family for dinner bc i was losing momentum and wouldn't be able to drive home. :(

i started to cry a little on the way home. id really like to go back to being normal again, at least my version of normal. i used to be able to sit through a movie without being in pain. i could drive in the dark. i could drive. i could walk up and down the stairs without being short of breath or without being in pain. this pain is ridiculous. my legs are throbbing and sore. my arms go numb, my thumbs are sore- which makes no sense. and this back pain... fuggedabout it! its like im flipping 80 years old! smh

so back to the mac n cheese. i slept through the night, woke up early and took my pills, went back to sleep. woke up to go to the bathroom, took the rest of my pills and did my shot, and went back to sleep. i woke up again around noon bc if i didnt eat something id be sick. i never have an appetite and everything makes me sick, so i have to force myself to eat something. you wouldnt think that by looking at me but... its true. so i go for my mac n cheese that i made yesterday so id have it today and where is it? GONE. so then im thinking maybe i never really made it and it was in my head, until i saw the empty container in the sink. i know who ate it. whatever. so i had a mini meltdown. crying, getting angry, short of breath, tightness in my chest... i even smacked the wall. then i went back to bed. and lost it. cried and cried. i just wrapped myself up in the covers and got angry with myself.

i mean, why the hell was i crying and getting angry about mac and cheese!!! it's not that big of a deal, AT ALL! so why am i freaking the eff out?! ive been storing this negative/bad energy for days... trying not to explode. trying not to tell people how i feel so i dont offend anyone. even though... does it really matter if i offend them? should i really care when... they havent shown me any different? but i keep my mouth shut... and i guess ill continue to do so and just deal with this the best way i can... sleep or blogging. i need to get it out somehow... i dont have money to shop so... retail therapy is out of the question. i cant drink so alcohol is out... and exercise makes me feel like im going to die.

which brings me to physical therapy. if i ever remember im going to ask my internist or endo to give me an rx to try it again. i almost couldnt get up off the floor. getting up and down is a  real struggle for me. i need to get my muscles moving again since im going back to cape may on the 2. i cannot wait to get the hell outta here. the plan is a sock hop on the 3 and i plan on going to flip flops with my girl to get our dance on. im gonna be her dd. she needs it. and i need to get out. maybe monday i wont feel so awful and can try and function. hell, maybe ill feel up to jumping around later. ill hook up my ipod in my sisters room and bust a move...

crap. there goes the memory AGAIN. there was more that i wanted to say but i have no idea wtf that was. yay. some days this really effing blows. some days, ha. who am i kidding. this disease blows freaking chunks. and some days its hard to remember that im more than just my disease. but... when your disease takes you over... its hard to remember that there's an incredible person inside of you. there's someone with strength and courage and beauty and fun... not just some disabled person who cant move like she used to or love like she used to...

i guess the love thing is wrong. because... my heart is huge and is constantly loving other people. and no, not the romantic kind. the friendship kind, the encouraging kind, the kind that others need. idk. i guess im glad thats a part of me that wasnt lost in all of this....

i did lose my looks though, or at least a chunk of my self esteem. i had another one of those, i hate the way i look in everything/ im disgusted by who i see in the mirror days the other day. i got sick of parting my hair over my scar so no one could see it. its annoying and not my natural part so i figured id try and let the natural part take over.... and try again. ha. nooooooooope. theres a nice chunk of hair missing, that will probably never grow back. it hasn't yet. the whole crainiotomy/skullhacking/scar/radiation i think kinda killed that section so... looks like well be reworking the new part and forcing my hair to do something it doesnt want to. eh. oh well. it's just hair right? it may sound shallow but my hair was always a big part of me. a big huge part. i guess it was kind of like cutting samsons hair, or rapunzels... that's where most of my beauty was. people were envious of my hair, and my skin... well... my hairs a pain in the ass now and my skin sucks. well, my hairs not completely awful... its still pretty just taking forever to grow.

i started tanning again. well.. sort of. im giving it a shot. im tired of being so pale. hopefully it doesnt warp me, but at this point, ill try anything to feel better. i think the vitamin d thing might be helping. its supposed to anyway

there we go again... forgetting my point...

oh yeah. all of this pain im in... it takes alot of out me. alot. a whole freaking lot. the whole gouging out my cyst on tuesday almost killed me... and then thursday... holy guacamole. i wanted to die. i almost passed out at the drs out from the amount of blood they drained out of me. seriously. it looked like i gave birth. the sheets were covered, the room was spinning, everything started going dark, so i had to lay down. i had no other choice. i screamed alot. and punched the wall. but after the shot started working and i was finally numb... i was ok. sort of. completely exhausted after that so when i got home i layed on the couch and that was the end of me. oh wait, no. i had to go pay my moms bill and then go tanning, and THEN that was the end of me. i slept really good that night. maybe because i was so freakin exhausted... hmmm... maybe thats the answer to me getting sleep. i need to be completely worn out or in oodles of pain and THEN i can sleep through the night... i actually think ive been sleeping better because im moving upstairs into my sisters room since she moved out, and i can sleep with my dog. hes my lil protector. and i love him. so so much.

Wednesday, November 16, 2011

WARNING! CONTENTS UNDER PRESSURE!!!

do you have ANY idea how much pressure is on a person to be so optimistic and happy and positive and encouraging and inspiring and courageous and heroic ALL THE FUCKING TIME?!

no clue? well let me fill you in!

the LAST time, well, maybe not the LAST last time... but... i had a day where i was completely miserable after my first surgery. and i wasnt happy. and i posted it on my facebook... well... let me twll you what kind of hell i got for that one! "nicole you're so negative. nicole you have a low self-esteem. nicole you don't appreciate what you have. nicole, you need intense therapy." INSTEAD of telling me that it's gonna get better, i had my 'closest friends' crucify me. am i not allowed to mourn the loss of my sight? am i not allowed to get angry that i dont have much of a life because im sick all the time? am i not allowed to get annoyed with the fact that i dont remember much? im so sorry. i didnt know i wasnt allowed to have a bad day. i forgot that it was my job to be the glue that holds everyone and everything together!!!

because thats who i was, pre-surgery. i held everything together. i held EVERYONE together. i was responsible for keeping my friendships alive. i was the one who'd come running, every single time. u needed a shoulder? call me. u need a ride? call me. u need money? call me. i will be there. no matter what. we fight like we hate each other, but u get your heartbroken , call me., ill be there. I WAS ALWAYS THERE. always checking up on you, calling you, making plans with you. sending you little pick me ups because i knew you needed one, or just to let you know im thinking of you. that's just who i am.

POSTSURGERY- i did the same damn thing. you were having a bad day, didnt tell me, i had to read about it on facebook or hear about it from someone else but guess what? there i was. caring about you. trying to pick you up while inside i was a mess. while my world was falling apart all around me, i was still caring. still being there. still showing you that HEY! EVEN THOUGH THEY HACKED MY SKULL, SHAVED MY HEAD, TOOK MY SIGHT... I STILL LOVE AND CARE ABOUT YOU! pushing my feelings and life aside, still putting you first.... but wait!

you're gone. where did you go? because now i need to lean on you, or need you to show me you care... you disappear? because im not 100% im not good enough to be part of your life? (i know this sounds like its directed at a boyfriend, but its not. its a friendship. ALOT of friendships, or lack there of) i dont understand. i never asked for anything from anybody. i never expected anything from anyone... except friendship, acceptance and understanding. i didnt think that was asking too much, ever. is it so wrong for me to want people to return the favor? to be there? to be an ear? a shoulder? to have someone call me out of the blue because they're thinking of me? am i selfish or shallow because i want to hear a friend say, its ok to be sad. i love you. is that so terrible? to want someone to wrap their arms around me and cry with me? get angry with me? i didn't think it was... but then... i dont know. maybe i expect people to have big hearts like i do, and they just dont...

funny thing? im actually closer to those who are the furthest away from me... and i love and appreciate them so much. hell, I'll even use freakin names! Jennie, Mike, Chell, George, Christine, Jackie, Jo, Amy and Angie... they're far far away from me... but always let me know...  I can't forget my Amanda. She's around the corner. They let me know my friendship is not one of convenience, that I can rely on them. Hell, people from HS are surprising me too! We never really spoke but... there they are. popping up in my life, like Nicole. Who hates stupid people as much as I do. And then Vanessa who wanted to take pictures of me and my family (love this girl. we used to make fun of rattail together ;) ) I've rekindled some friendeships, like with Csilla and Tristina. I love those girls and CANNOT WAIT til we run away to the cabin next week.

I guess I don't understand, but maybe I'm not supposed to. Maybe I'm supposed to learn to not give a flying fig about people and just tell them to screw off. I'm slowly learning where I stand with others. Maybe I'm overreacting. Maybe people do care, they're just so wrapped up in their own lives that i got pushed to the wayside... which is fine... you know what? NO. IT IS NOT FINE!!! no matter how busy my life got, who i dated, what i was dealing with... i ALWAYS made time to let others know i was thinking of them. that i loved them. that i was here for them. why is it too much to ask to expect the same damn thing!?

No one seems to get how simple i really am. did i love the flowers and get well cards i got after my first surgery? of course. i especially loved the teddy bear i named Sam that my Jessi sent me. Did i love when Kris, Clair and Panda took me to the casino for a few hours? hells yes. did i love spending oodles of time at the Sherman Theatre or hanging out with Andie? hells yes! did i adore being queen for a few days at Joannes house? omg yes. or them driving all the way out here just to have dinner with me? or come to my house? loved it. or how bout being amazon sat by kris? fabulous. and meeting danny gokey and hanson? duh. that's a no brainer! but then... I started to get better, and I guess getting better meant I no longer needed anyone. (ps. thats wrong. because i did need you) and then i got sicker, and a few faces popped back up. that was nice, until they disappeared again. i dont like dumping my problems or my feelings on people, because i feel like a burden. and then i feel like people are only listening because they feel bad for me, or feel guilty. but shouldnt friends just be there no matter what? am i that awful for wanting that? i didn't think i was...

i spent alot of today in tears. because im sick of being sick. im sick of feeling bad about being frustrated with being sick. im sick of people taking others for granted, or for taking advantage of others who have kind hearts. im sick of feeling guilty for being sick. im sick of wanting to go back to my old life because then people were there... but shouldnt it be in sickness and in health? idk... maybe that's just me... im sick of being allergic to everything! it suuuuuuuucks. got on an antibiotic yesterday that doesnt interact with the keto and i wasnt allergic to before...well... guess who got a rash, had trouble breathing? ME! oh happy day. i want answers. i want others to be healed. i want people to be nicer. i DO want to live in a world where LOVE CONQUERS ALL. where love is loud enough to drown out the sounds of hate. I WANT IT ALL! i dont care. i do.

i want to stop feeling like im going to explode. i want the anger to subside. the sadness to go away. the happiness to be constant. i want to get off of this emotional rollercoaster. i dont want to need medication to help my mood because the cushings caused my horomones to be shot to hell. i want this weight to be gone. i want to see my friends smile more than they cry. i want my family to know how important they are to me and how much i love them. i want my brother and sister to be the most amazing people they can be- and hell, already are! my brother and sister are my walls of support. my mom and dad are too, but theyve always taken care of me. i dont like needing someone to take care of me. but... ive regressed and it's something im still getting used to. you'd think after a year id be ok with it... noooooooooope. i am closer to my aunt now too. she took me to most of my appointments before she went back to work. that was fun. i miss that.

i dont know. i dont even know where to go with this anymore. just that... i feel alone. completely... alone. and sad. sadness isn't an emotion i choose to deal with, ever. but it seems like today i have no choice but to attempt to deal with it. i guess i made a positive step, im blogging instead of buryin myself in my blankets and sleeping the day away...

if you love me, tell me. if you're thinking about me, tell me. if you want to hang out, tell me. if you have a problem, tell me. im sick, not dead. i never needed people to let me know they cared about me before, and maybe that's why im not really getting what i need now... but this is me. telling you that i need you. i dont want to need you. ive always been miss independent, miss i dont need anybody... but here i am. open to your rejection and hurt... and here i am. asking you... to be there for me. to make this street a two-way. to let you know that i miss you.

Tuesday, November 15, 2011

11.7.2010

11.7.10

its not the life I asked for
not even a life I wished for
not a life I wanted
not a little bit
not a lotta bit
not at all
but it’s the life I got
do I hate it somedays?
You betcha
Do I wanna cry somedays?
Try every day
Do I wanna end it all and never look back?
Oh honey
You have no idea
But no
Im stuck
Im here
For some strange reason
Im here
And I don’t want to be
I want to be in a place where…
There is no hurt
There is no sadness
There is no sick
I wanna be free.

Im tired of crying
Tired of TRYING
Tired of people pretending
I hate pretending
I hate acting like im ok
When I AM NOT OK
So why pretend?
To make you happy
I’m not allowed to be sad
Because im strong
And pleasant
And blah blah blah

Yeah.
I get it
I can move fucking mountains
I can help the poor
Heal the sick
Cheer the sad
I get it
But who’s gonna catch me?
I have done so much
For so many
And for what?
Im never the one who asks
I never want help
I never need it

But I need it
Now
And where is it?
I have no idea
Rely on God
Yeah. I get that too
But he can’t really hug me
He can’t really give me a tissue
So what do I do?
Who do I talk to?

Im tired of hearing
This too shall pass
Im tired of hearing
I understand
You don’t know
You don’t get it
You never will.
None of you.
Ever
Will.

Im tired of the lies
Im tired of getting my hopes up
Im tired of caring
Im tired
Im fucking tired
Of all of it
But no
I have to slap a smile on
Look at you and grin

Why?
Oh right
Because that’s what I do
I do for others
And you’re probably thinking
Im here
But you’re not
You pray for me
You think happy thoughts
But are you really here?
Nope
And do you know how I feel?
Do you?
Like a fucking burden
That’s how
Like im a waste of fucking time

Why hold anything back now?
No reason
Im not ashamed of my past
The things ive done
Who ive done
Ok, maybe id delete a few of the whos
But you cant take life back
But my life?
Feels like it’s been taken from me
And im tired
Im tired of feeling like this

Alone.

I don’t care what you think
Go on
Say im just bitching
You try and be me
You try and feel like this
You try and push through
You try having your heart ripped out
Spending your summer on crutches
In and out of the hospital
Wondering whether or not you’re gonna wake up
Try it
Be me

You can’t can you
You can’t handle the pain
The questions
The being afraid of EVERYTHING
Not knowing what kind of pain should send you to the hospital
Not knowing if you’re gonna wake up with NO sight
Or THINK maybe you’re seeing
But you’re not
Or being AFRAID TO FUCKING SLEEP
Because you don’t know if a wrong turn
Will cost you your life

And looking in the mirror?
Forget it
I wish I could cover every mirror I walk past!
Look at me
LOOK AT ME
I used to stop and stare at myself
Why?
Because I thought I was beautiful
KEYWORD: THOUGHT
And then what?
I was ripped apart
Drugged up
And now look
Just look.
It’s disgusting what I see
I hate it. hate it. hate it

Im tired
Tired of holding in the tears
Tired of feeling like im crying for nothing
Crying for something that was bullshit
Crying because it should have been different
Crying because I don’t understand
Crying because…
Well because I can

Some days I just want to stop
And quit
And just walk away
Or curl into a little ball
And hide
Where no one
Ever
Can hurt me
Again.

But no.
Im stuck
Im stuck here
Being tired
And tear-stained
And here

So here we go
Another day
To paste a smile on
And push through
Why?
Because of people like you
I’m not allowed to hurt
To cry
To give up
Because you need me
To be happy
To catch you when you fall
To be who everyone says I am
Strong
An inspiration
Happy
Beautiful
A star

And on the inside?
I feel like none of those things
But don’t worry
Ill keep pretending.
I always do.

what do u see?

when you look at me, who do you see?
my sickness?
my disability?
my downfall?
my scar?
my body that doesnt always work?
or an eye that can no longer see?
my struggle?

or do you see what i see?
strength
courage
insecurities
bravery
someone who grits her teeth and takes the pain
someone who has no other choice
someone who smiles through it all

or do you see what i WANT to see
beauty
happiness
peace
a friend
someone who's loved
someone who's unstoppable

some days
im all of the above
some days
im not blind, just ignorant to ugliness
some days
im strong enough to take down goliath
some days
my happiness is overpowering
some days
im the most beautiful girl in the world
some days
im no longer insecure
some days
i am my sickness
but everyday
I AM A FIGHTER
everyday
I AM A SURVIVOR
everyday
I WILL NOT GIVE UP
everyday
I LOVE
everyday
I CONQUER SOMETHING
everyday
I AM TRUE TO ME.

so again i ask,
what do you see when you look at me>?

Sunday, November 13, 2011

a poem

i just wrote this
its untitled
but it felt good to write again...


11.13.11



so alone
so completely alone
trapped
in a dark well
where there is no light

but there is light
there’s you
isn’t there?
Are you still listening?

Save me

Send a rope
Send a body
Send a
A smile

Smile for me
Show me the way
That it’s not all dark

Believe

Believe FOR me
Believe IN me
Believe WITH me

Its harder today
Harder than yesterday
To wake up
To get up
To fake it

Sleep
Under the covers
And hide away
From you, from her,
From the world

Don’t wake me
Unless you can save me
Because i
Im tired of saving myself.

Tired of being the one
The only one
Who’s love and trust
 I can depend on.

 It’s me against the world
Again
Fighting for my happiness
My freedom
My sanity

This is my life
This is my heartache
This is my time

Can it be your time?

Show me that people aren’t monsters
That love exists
That friendship exists?
That im not the only one?

Prove me wrong
Please.

I’d like to believe again
In you
In people
In me.

my bad..

i always thought frienship was supposed to be a two-way street... my bad.

it seems to me, more often than not, i walk this street alone. oh dont worry, i can bail and nicci will still be there. i can make promises and break them and nicci will still be there. i can trust that nicci will be there for me, even though ive continually failed her. i can go to nicci when i have a problem, and not listen to hers. nicci doesn't give up. nicci doesn't back down. nicci's the glue that holds everything together. nicci this. nicci that.

oh yeah? well nicci's about to hand you a big ole sandwich full of i dont give a shits. because honestly? why do i have to do everything? why do i need to be the one to make the phone calls? make the plans? and be the one to always follow through? sorry. it's bullshit. and i wanna stop. i really do.

im tired of feeding egos too. seriously. dont come to me just because you want to feel good about yourself. i think people tend to forget who I AM. i can build you up, sure. make you feel incredible about yourself and make you think that your shit dont stink... but did you also forget i can make you feel invisible? like you're nothing? hmmm... granted, i dont like the second half. id rather build you up and make you feel on top of the world. it's what i do best. i've always been the sunshine and the smiles and the positivity princess but... this girl's a warrior and i wear my armor with pride and there's NO WAY im letting anyone destroy what ive taken so long to build in myself. i refuse to be taken down, to be made to feel less than amazing. but for some reason... lately i am.

maybe it's because people are letting me down. so im shutting down. it's just so much easier to be trapped in myself, then to allow other people in. or to start to care. or even continuing to care. my problem is i care too much and i have a heart of gold and i just... well, let people hurt me. but, whatever. maybe i shouldnt be hurt and maybe im taking this all to heart but... im really sick of my 'friends' letting me down. like seriously. it's ridiculous. and annoying. and frustrating. but do i say anything? no. why? well... i never said anything BEFORE i got sick, so why start now? im sick of people blaming my feelings and emotions on my sickness. ive felt this way before, i just never said anything. my bad for thinking you'd be there for me now, as i had always been there for you.
my bad for thinking that you cared
my bad for thinking you wouldnt let me down
my bad for continuing to be there
my bad for continuing to care
my bad for allowing you to hurt me
my bad for allowing myself to be hurt.

dont worry. im just gonna disappear for a while. and then... well... we'll see if you  noticed. more than likely, you wont. and that's fine. i know who my real friends are.

Thursday, November 10, 2011

tomato, tom ah toe... either way... :/

oh acid reflux... how do i love thee...

or not! freakin a! it wasnt as bad today, thank goodness. i think im gonna have to look up what to stay away from... tomatoes, anything acidicy, which sucks because EVERYTHING is... except milk... but im lactose intolerant. so thats awesome. but mom bought me dairy pills and they seem to be working.

mom read that drinking aloe juice is supposed to help, so ive been doing that. idk if its helping but today it wasnt that bad. tuesday it wasnt that bad. yesterday it was awful. like awwwwwwwwfuuullllllll. and i was running to the bathroom like every 10 minutes. but... i looked freakin hott as hell. it was AWESOME!! i slid into a dress i havent worn in, oh... idk.. 3 years maybe? i looked good. mentally/emotionally felt amazing... just that whole stomach issue. oh right, acid reflux. my dr said i could take my dexillant if i needed to, but im nervous so im not. im just gonna deal with it until i cant any longer. bc if i have to take the dexillant they up the ketoconazole. which may not be a bad thing, but... ive dealt with worse pain.

i think the keto might be working. ive been happier. which is a plus... unless im just on the up part of the cushings roller coaster, who knows. im really tired today. probably because i started the 3xs a day instead of the 2. and ive been running around like a nutzo. i dont remember what i did monday, but tuesday i sat at the polls for Colleen which was awesome. and she won MDJ so that rocks. I was there alllllllllll day... but what a wonderful day to be out! 72 and sunny! :) i was exhausted though. and then yesterday i had Beth and then I attempted to rest before going out with Nicole, which was nice. she popped my chili's cherry... acid reflux nightmare, but soooooooo good! and so nice to be out, lookin good, feelin good and having good conversation. today? today blows. im tired. sore. achey. headachy. dizzy. but... whatever. im glad the only thing i had to do was call to find out where i can have blood work done. i couldnt even move. and there was no way i was driving anywhere today. not.at.all.

but im so excited as to how awesome i looked... idk. maybe its vanity, but when i look at myself and i like what i see, i feel tons better! probably because cushings stole my body and im looking forward to getting it back.




i kind of look like a duck in the last one, but whatever, it happens. haha. OH and we got some of the prints back from our photo shoot... we are one good looking family!


ugh. now i dont remember what i wanted to say... oh right. my friends. apparently i have some pretty incredible people in my life. i spent most of today, while in pain, laughing. i love smiling and that my friends do that to me. i smiled alot yesterday too. and tuesday night. :) maybe its the full moon but ive been shocked/impressed/flattered the past few days. and i love it. i love how awesome my friends are. i love knowing who my real friends are. i love that im going to get better and be able to spend more time with them <3 things can only go up! im convinced :) and to hear that my friend wants to do a cushings awareness day next spring? that speaks volumes. 


Sunday, November 6, 2011

strong enough to break perhaps?

that's what it feels like. and im only blogging today because i hate crying. i really do. these tears are coming out of nowhere and it's like... i dont want to let one fall because if one falls... what if i can't stop? i hate being sad. i hate feeling sad. i feel so alone. so lost. and i try so hard to be strong for everyone, but moreso for myself. i need to hold myself together. i can't let myself fall apart. it's my job to keep positive and try to convince everyone that im ok. and that i will be ok. and that i am on the road to recovery, even though some days i have lots of doubts. and i mean LOTS. there are days i wanna say WHEN WILL I BE BETTER?! but this is all a waiting game, right? a test of patience perhaps? of character? of willpower? i have no idea anymore. and a part of me doesn't want to know. a part of me just wants to say I AM FUCKING DONE.  im so over this whole being sick thing.

and this new medication makes me not able to take my anti-depressants/anxiety meds. the plan was do wean off, but silly me forgot to put them in my pill box so i went cold turkey. so, im going through withdrawal, my horomones are all out of whack, im getting pissed off at people and i just want to scream at some of them.

like the girl who could be making something of herself but is just wasting her life. i get it, we all have our own storys/journeys but my God. were you not raised better than that? im absolutely disgusted. seriously. im to the point where if i see u i may just take your face and smash it into mashed potatoes! smh. and maybe i shouldn't care, but i do. but whatever. ill let it go. because you disgust me. and it's depressing because you have all this opportunity and you just throw it all away on some awful people. but whatever. you made your bed. just watch out for the fleas.

and im sick of people feeling sorry for me. im sick of the look. that pitiful look. yeah, i get it. im sick. but stop feeling sorry for me. and stop pitying me. hell, u wanna keep feeling sorry for me? then spend fucking time with me. or how bout u pick up the phone? im sick of being the one to hold friendships together. and im DONE.

but whatever, we had nice family time today. playing at the park with my friend who's an awesome photographer. she wanted to do an inspirational shoot/story board. im looking forward to seeing how it turns out.
even though ill probably hate the pictures of myself because i hate looking at myself. so that'll be great.

and im sick of being the 'convenience' friend. im there no matter what. do the fucking same. or? stop coming to me only when u need something. because im gonna stop being there for people. why should i try when u wont do the same? OVER IT
oh well. another day another... ride on this rollercoaster...

and here ive been spending time trying to convince other sickies that we're blessed and should look for the blessings in everything and blah blah blah. i guess i feel like... if i convince others that they're ok, and i keep telling other people that im ok, eventually ill believe it. or ill wake up one morning and this will all have been a terrible nightmare. im doing the best i can, but at times i feel like my best isnt good enough because im struggling and i hate to struggle. i like to be the strong one. the one who holds everything together. the one who holds EVERYONE together. the strong one. the secure one. the reliable one. the friendly one. the positive one. the strong one.the happy one. but those are some hard roles to maintain...

Thursday, November 3, 2011

and ill smile anyway

so... today was my trip to the neurosugeon to find out the results of my mri and if radiation was successful. the reason he couldn't remove the entire tumor during my TSS (transphenoidal sinus surgery) AKA my 2nd surgery, was because the tumor had clung to my carotid artery and if he had pulled it, i would have lost all facial movement and possibly have gone blind. so they did radiation in July to try and kill what was left. well, the tumor is still attached to my carotid artery. one part of the tumor is gone, and the one on the artery is smaller, but still there. so... ok. let's deal with this.

were back to playing the wait and see game. hopefully the new medication starts to work too, but that wont shrink it. the neuro said that radiation takes a while to see full results. so... i go back in 3 months after another mri. fingers crossed.

patience. that seems to be the key to beating this whole thing. and if u knew me at all, prior to this, you would know that patience is NOT one of my strong points. i am NOT good at being patient... at all. but, this whole cushings thing is a wait and see game. u wait for results. u wait to get better. u wait for ur tumor to shrink. u wait out the pain. wait. wait. wait. no more make things happen now, no no. it's all in God's time... and I guess I'm still struggling with that. But whatever. I guess each day it gets a little easier... I say that but other days I feel like it gets harder. and that it's never going to get better. i know it will, and that i am but.... holy canoli. im so ready for this to be over. to be healthy. to go hiking. to be skinny. to go a day without pain killers. to laugh and laugh and laugh. to dance the night away. to work. one day... one day...

so, ok. i like to post my little accomplishments, or positive things that happen with my recovery on facebook. im sure people are probably sick of it, but i really dont care. i post stuff because i need to feel that someone cares. that someone who doesn't HAVE to care, cares. maybe that's vain or insecure, but its how i feel. my family HAS to care about me, they're family... but when i get comments from my friends or people i havent talked to in a few years, and they say to keep going, or that they're praying for me, or that im an inspiration, it makes me feel good. so, call it whatever u want but, i need that right now. some think its lame, but i say eff em.

and let's talk about dr selection shall we? i totally have an awesome team now. if i dont like what one of them says, or if ive done research, i let them know. and? they LISTEN. it's nice to have a team listen to me, and a team that works well together. and supports me.

im sure there was more i wanted to say. but im exhausted. and im still not sleeping. and i feel so blah. and my legs are throbbing. and i just want to fall asleep. but if i do that now? well... ill be up allllllllllllllllllllllllllllllllllll night. again.

Tuesday, November 1, 2011

i knew there was a reason i woke up smiling!!

i did. i woke up with a big ol smile on my face! did i sleep? hell naw, of course not. I woke up every 45 minutes. and i was itchy as hell. and i was burnin up and i had a headache that wouldn't quit... but i guess, thats 'normal' for me now. especially when i had my dog barking at my door to let him in so he could snuggle with me.

dog snuggles, plus the sun pouring into my window... not too bad, not too bad at all :) i guess it's about time that the darkness started fading from my life. it only lasts a week or so, sometimes not even that long. this bout of darkness lasted longer than i had wanted to, but sometimes i just cant escape it. thanks cushings disease.

but ANYWAY, i got a call from my endocrinologist, who is freaking amazing, seriously. you know you have a good dr when they call u themselves, email your mom, and do extra research to make sure you're gonna be alright. so anyway, he calls me and wants to start the ketaconozole or however you spell it. im excited. actually, really really REALLY excited. ive heard more good things then bad about this treatment. yeah i have to cut out some of my meds, and take liver tests every 2 weeks and watch my blood pressure and the side effects, but whatever. THE ROAD TO RECOVERY BAYBEE!!! all i gots to say is... its about damn time!!! :)

and the cushie camp doc got in touch with me soooooooo now i just have to wait for our phone call to talk about me and the joys of being a cushie girl <3

and i know im more than a girl with cushings disease, but when something like this takes over your life, you tend to focus on it. and ive met some of the most incredible people on my journey- cushies and non-cushies. watch us change the world. :) because we will. and we are. one day at a time.

Monday, October 31, 2011

a happier blog... sort of

so, yesterday, my friend mark told me i needed to smile. because it's not worth it to frown. and he's right. but im still feeling annoyed and angry. so i got a new mug today. and no one is allowed to use it

why? because this is how ive been feeling EVERY SINGLE DAY for the past few weeks. it's up and down and up and down. i have been working on things that make me happy... spending time with my sister, sleeping for more than 2 hours at a shot... im kinda lookin forward to the lil brats comin to the door in costume tonight. i like the cute ones, not the scary creepy slutty ones. i love halloween, it's a day to pretend to be someone you're not. im actually tempted to put on my eye patch, since i cant see out of my right eye anyway... why not be a pirate princess or something? i have horns too... oh decisions, decisions.

i keep getting asked if im going to write a book, and i think i might... it's just too bad i can't focus long enough to do it. but maybe... maybe this week ill start it. i have to start painting again. i need to get out of this funk, but all i wanna do is sleep. if im sleeping, im not having anxiety attacks. if im sleeping im not feeling sick. if im sleeping... im shutting out the rest of the world, and not allowing anyone to hurt me.

and people keep asking how im doing with the break up. honestly? im not sad. at. all. i kinda thought i would be. but, how can u miss someone who was never really there anyway? right? the relationship died long before we spoke the words. and im glad hes out of my life. him and his crazy family. seriously. creepers.

so yeah. today's been kind of a blah/bummy day. but id rather that then to be freaking out.

thursday we get the results of my mri. if u had asked me what i thought the outcome would be 2 weeks ago, id say radiation was successful. today? eh... im not so convinced.

what am i most looking forward to about getting healthy? moving to cape may. getting a house. with crabcake. or at least my own house. and he can have a room there. i can't wait to be healthy enough to get away from here and start over. and REALLY start over. fresh. clean. forget all the jacktards around here who do nothing but bring me down. seriously. so over the fake people. now only if they would get over themselves!

Sunday, October 30, 2011

some links

a cushie convention? hmm...

cushie info

what makes me happy

why not be pissed off today

i just cant seem to kick this angry thing. maybe the medication stopped working. maybe im just tired of it all. maybe im sick of people and their drama. or people being lazy.

ha. lazy. that's a good one. i love love loved it when people said i was just being lazy because i was tired, or i wasnt working hard enough bc i dont have a job. id love to have a job. IM FUCKING SICK YOU JACKTARDS! i really just want to... ugh... punch someone maybe? becuase there ARE lazy mofos out there, and i see them and wanna hit them. why? because i CANT work. i would love to be working, changing lives, making money and living a life. but i cant. until im cured. and whatever. fine. im still having a hard time accepting that though. like, why does this have to take so damn long? smh. oh well. whatever.

and today its like all the stupid people were out. they were too afraid to drive yesterday in all the snow, so theyre out today. one car was swerving all over the place, another almost ran someone over in the parking lot, another lady wasnt watching where she was going and almost sideswiped someone else. wth. its like everyone ate a big bowl of stupid this morning.

i feel like there was something else i wanted to bitch about, but for the life of me... cant remember. there's a shock.

and now i remember. im so sick of being let down by people. seriously. if you say you're gonna be there, THEN BE THERE! what about that concept is so hard for people to comprehend? if you don't have your word, you have nothing. seriously.
see if i make any more efforts on my part. im sick, yeah. but im always there. and i make an effort to be there, no matter what. my word actually means something.

#stopbeingfake

Saturday, October 29, 2011

i sound like a pepto bismol commercial...

nicole, what kind of symptoms are you experiencing?
upset stomach, diareah, nausea heartburn indigestion, oooh pepto bismol...
apparently it wasnt as funny as i thought it was. but i laughed :) other symptoms you ask? sure ill tell you! dizzy spells, black outs, headaches, facial pain, back pain, numbness in my hands and feet, forgetting where i am, who im talking to, what im doing or where im going... itching, cysts, some acne, dry skin and i THINK my eyelashes are falling out... but im not sure about that one. and im not sure what kind of dr i go to for that... oh and the swelling, and bitchiness. my goodness. the incredible hulk is ready to come out... and she's coming out more and more... and randomly... *sigh* i kinda feel bad for those who get in my way, or on my bad side. i never really had a bad side. ive always been so optimistic and happy and, well, a doormat... not anymore :) one of the better things from being diagnosed. i dont take anyone's shit anymore.

on another note:
so, i thought these panic/anxiety attacks were getting less. and i guess they kind of are, during the day anyways... but last night. holy canoli batman! i was laying there, and my mind started racing, i started sweating, i could barely breathe and felt like the room was closing in on me... just as i thought i was starting to fall asleep. i didn't want to get up bc i was too achey and it was too cold and i was cozy under the covers, so i tried to breathe through it. that worked, the first time. and then i woke up again, 2 hours later, same symptoms, minus the sweating. and then two hours after that. and then four hours after that. some nights its so bad i just turn on the tv and listen to whatevers on to try and relax. *sigh*

oh, and theres a good chance ill rant/blog/post about the same stuff more than once. why? because i dont remember. and it sucks, but you're reading so i must be keeping you entertained.

Friday, October 28, 2011

touched by an angel

soo... i received a very much needed to hear message from my grandfather last night... mind you, he passed away almost 2 years ago...

things have been rough, im not gonna lie. it's become harder and harder to keep it together. im forgetting more. im getting confused more. im dizzier. im puffy again. im falling. im waking up more irritable. im cranky. i feel like my brain cant shut off. i talk in circles. im losing what im saying. im speaking incredibly fast- i do this in order to get everything out, bc if i dont, then i forget. im stuttering. speaking in chopped up sentences, im not even making sense sometimes. it's scaring the crap out of me... however, since the break up the anxiety attacks have been a little less. hmm... sounds like a PLUS to me! but yeah, it's hard to hold things together. and i just get so angry... i have alot of anger in me... and yet im happy. does that make sense? probably not. but. whatever. oh, and i love my support group. i really do. i have met some of the most incredible people ever there, and it's nice to have someone to talk to, who understands. my girls are fab.

so grandpa. right. so last night im in my room, saying my prayers and just thinking... and then i get the urge to try and find a birthday card for my friend who's dealing with his own medical baloney. so, i go to my bag of cards that my grandpa had given me when he moved from his house to the nursing home. the top card was one with a mermaid overlooking the earth... and if u know me, u know i love the ocean and that it means alot to me. so, i open the card to see what it says inside and who i can give it to... it read: treat yourself with kindness, listen to how you feel. wrap yourself in soft warm thoughts, for this is your time to heal.... wow. just... wow. thanks grandpa. looks like ill be keeping this one for myself.

its crazy. well maybe not crazy but, it was just what i needed to hear. its time to stop taking care of everyone else and to really focus on healing. i texted this to my girl last night bc i needed to tell someone and i knew she'd be up. she told me that was him telling me to ignore everyone elses drama, bc everyone comes to me with it. and my other friend says i always listened to my grandpa, so he wants me to listen now.

this whole cushings thing is alot scarier than i let on. i could die. that's pretty much it. i thought i was getting better and that radiation was working. did u see how hott i looked last week? no? ha. well...
i know right? and then today:
im all puffy and cushingy again. wth!!


im so frustrated! it's like... i have these amazingly wonderful days, and then WHAM. i get sick again. it's ridiculous. and the second picture isnt even the worst of it. i was a big ole puff ball on monday, but i wont show that shot to anyone. bc it bothers me too much. *sigh* theyre talking about putting me on a new medication to shut down my adrenals so ill stop producing cortisol. but of course, there are side effects. my moms been researching it like crazy.but the side effects, that ive read about, I ALREADY EXPERIENCE WITH CUSHINGS! so really... would it be that much different? i did tell my mom that maybe they should just take out my adrenal glands. if i dont need em, take em. what's one more surgery? one more pill? have i not proven that I AM A SURVIVOR, I AM STRONG AND I WILL BEAT THIS? smh. yeah it sucks. and yeah im angry. and yeah i wanna cry but... i dont let myself cry... i kinda feel like if i let one tear fall... i wont be able to stop.

my friend made me a cd, to help get me through everything... and this song just seems fitting. it's called 'stand in the rain' by superchick:


i highly recommend clicking the play button. but if you don't want to, here are the lyrics:
She never slows down.
She doesn't know why but she knows that when she's all alone, feels like its all coming down
She won't turn around
The shadows are long and she fears if she cries that first tear, the tears will not stop raining down

[CHORUS]
So stand in the rain
Stand your ground
Stand up when it's all crashing down
You stand through the pain
You won't drown
And one day, whats lost can be found
You stand in the rain

She won't make a sound
Alone in this fight with herself and the fears whispering if she stands she'll fall down
She wants to be found
The only way out is through everything she's running from wants to give up and lie down.

[CHORUS]
So stand in the rain
Stand your ground
Stand up when it's all crashing down
You stand through the pain
You won't drown
And one day, whats lost can be found
You stand in the rain

So stand in the rain
Stand your ground
Stand up when it's all crashing down
Stand through the pain
You won't drown
And one day, whats lost can be found

[CHORUS]
So stand in the rain
Stand your ground
Stand up when it's all crashing down
You stand through the pain
You won't drown
And one day, whats lost can be found
You stand in the rain


ok, back to me. i do lead a blessed life. and i am grateful for the friends and family i have- the ones who have stuck by me through it all and the ones who refuse to let me down. not everyone has family they can call friends or friends that they consider family. im one of the lucky ones. and i get that, i do.

IM JUST SICK AND TIRED OF BEING SICK AND TIRED! i just wanna scream, WHEN WILL I BE BETTER?! but like my doc said today: patience.

great. God has been trying to teach me patience, oh, idk, all my life... and its taken 3 brain surgeries for me to get the hint. *sigh* im workin on it...

Thursday, October 27, 2011

courage

i absolutely fell in love with this song while i was in kohls today...

"Courage"- Orianthi

Take all my vicious words
And turn them into something good
Take all my preconceptions
And let the truth be understood
Take all my prized possessions
Leave only what I need
Take all my pieces of doubt
And let me be what's underneath
Courage is when you're afraid,
But you keep on moving anyway
Courage is when you're in pain,
But you keep on living anyway
We all have excuses why
Living in fear something in us dies
Like a bird with broken wings
It's not how high he flies,
But the song he sings
Courage is when you're afraid,
But you keep on moving anyway
Courage is when you're in pain,
But you keep on living anyway
It's not how many times you've been
knocked down
It's how many times you get back up
Courage is when you've lost your way,
But you find your strength anyway
Courage is when you're afraid
Courage is when it all seems grey
Courage is when you make a change,
And you keep on living anyway
You keep on moving anyway
You keep on giving anyway
You keep on loving anyway

Wednesday, October 26, 2011

they say not to give in...

dont give in to the darkness
stay strong
keep smiling
you are an inspiration
you're my hero

those are some pretty big shoes to fill. and it's hard. i won't deny it. i try to stay away from the 'sad' and 'depressed' emotions. they just don't work for me. id rather be upbeat... or lately... angry. id rather be pissed off then sad. apparently that's not the route to go. because then it all just builds and builds and eventually i cry and shut everyone out. i guess i feel like... if i let the sadness and the darkness take over, then im giving in. or that im letting others down, or that im letting myself down. everyone expects me to be positive all the time and to keep going, and i will keep going. i always do. and i guess before the cushings i would go and go and go and go... and now i can go and go, then i need to rest. and then i can go and go... and then rest. if i dont rest i feel like garbage, but no one seems to take that into consideration. and when i feel like garbage im more miserable. dont get me wrong, i like that people see me as a hero and an inspiration but... some days i need to take my cape off and be a human.

i really just wanted to crawl under the covers today and sleep the day away. i felt like there was a blanket of sadness/darkness falling over me. and i just wanted to let it take over. i just wanted to cry. and to be left alone... but no. i dont like it. i dont like feeling like that. so i sucked it up and went to walmart with csilla. who said to me, " its ok to cry. you don't have to be strong all the time"... THANK YOU CSILLA!!!! <3 i NEEDED to hear that. even though i got defensive and told her I had no other choice but to be strong, and then i thought about it... and eff it. i can go through the motions if i want. i dont have to be superwoman all the time.

so i went through the day, feelin kinda numb... and then i got lost. i thought i knew where i was going but... apparently not. thats what sucks about this whole brain surgery/cushings thing. the brain fog. while i was driving, i knew where i was going, and randomly... i had no idea where i was. and no idea how to get home. so... i took it in stride and just kinda drove around, enjoyed the changing leaves and fresh air and hanson, and found my way home. well... no. i didnt. i ended up going to mama z's house. she has an open door policy. so i knocked on her door and said, 'im here for the open door policy'. she wrapped her arms around me and i just cried and cried and cried. and it felt GOOD. there's no hug like a mama z hug. i talked to her. cried to her. laughed with her... then my boys came and had me rolling. just what i needed. those two are so cheerful. im blessed to have been able to work with them.

im still kinda... blah. but... this too shall pass. i wish there was a way to predict when these emotions were going to come on. or how long they were going to last.

id really like to scream...

WHEN IS IT GOING TO BE OVER?! WHEN AM I GOING TO FINALLY BE BETTER?! HOW LONG IS THIS GOING TO TAKE?!

but see... there are no answers. and i just have to deal with it. and maybe that's where my problem lies... i dont like not knowing... but... i used to love not knowing anything. i was a risk taker and whatever happens happens kinda girl. because i could. and now i dont have any other choice but to be that way... *sigh*

so... here we go again. time to suck it up. smile. and try to forget...

Tuesday, October 25, 2011

the girl in the mirror

it's not always easy to fall in love over and over again with the girl in the mirror. some days i think... i wish i was someone else. someone who didn't have cushings. someone who wasn't beaten by an ex boyfriend. someone who didn't always trust so easily and allow herself to be hurt. someone who doesn't always see the good in people. someone who doesn't wear her heart on her sleeve.... but then i think, would i like that girl? if i was that girl, i wouldn't be me. and... i kinda like me.

i have my bad days. my down days. the past few days, since saturday, it's been harder to smile. and i know it's the cushings, because this disease is an emotional roller coaster. and it's little things that trigger the tears or the frustration. yesterday it was the lawyer. and then... i dont even know. i was just so irritable. and it doesnt help when i wake up in a terrible mood. today, woke up happy. was fine most of the day and WHAM. it sucks. im not ashamed to say that im on anti-anxiety meds. i'm not ashamed to say that i need help... which is odd coming from me because i never would have asked for help before, nor would i have wanted to rely on anyone... which i still dont want to do.

one of the biggest things ive learned with this disease is that, well, u really can only count on yourself and family. well, some family. and a couple of friends. it's like niccis sick, so lets run away and then when she gets better come back. or, be there when i get sick and take off when i get better. how bout u stick around for the entire process? why can't that be who you are? like, i dont run. ive always been a ride or die kinda girl. and i still feel bad kicking people out of my life, the people who don't deserve to be a part of it. why? i dont freakin now. maybe because i want to believe that there is good in everybody? im pretty sure there is. i mean, not EVERYONE is malicious, rude, cruel, or out to get you, right? with everything ive been through its hard to trust and keep my belief in the good in the world. i always seem to trust the wrong people, because i wouldnt hurt someone or lie, so why would someone do that to me? it doesnt make any sense. but, everything over the past year doesn't make sense...

ive learned alot about myself though. im stronger than i thought i was. just because i cry doesn't mean im weak. it's not that bad needing people. it's scary because you have to trust that they're actually going to be there for you and you have to be able to rely on them... which im still not very good at. part of me feels that if i rely on someone, im a burden, or weak. but then i think, they count on me, so why cant it be reciprocated? ive also learned that bullshit drama doesn't matter. who needs it? im also sticking to my brutally honest truthful self. i dont sugar coat. i dont lie. if you want my opinion, and it's gonna bother you, don't ask for it. i can't help it. sometimes the truth does hurt. it's cliche, but thats life. so get over it. we all have issues, but if you're not going to better yourself and just want to complain, dont complain to me. and dont come crying to me about the same shit. especially when it's your own damn fault you're in the situation that you're in. it happens.

and then theres that whole some days i cant feel my legs or arms kinda thing. let me tell you how much fun that is... there's a reason it's called an invisible illness. no. im sitting down so how could you tell that i have no feeling? or all i have is pins and needles... smh. people.
*sigh* i dont know. it's a whirlwind. and it's my life. some days i dont know which way is up. but, there are better days ahead. and the more i convince other people of that, the more i am convinced myself.

Monday, October 24, 2011

what a journey

so... im 28 now. as of the 22nd and i got to spend an awesome birthday weekend with my amazing family. im telling u, im truly blessed.

i finally felt healthy enough to drive down to cape may BY MYSELF! it was exciting, i wasnt scared at all! there's just something about taking that trip that heals me... and i hadn't even gotten to the beach yet! such craziness... but i made it. :) and my cousins blew up my phone til i got there. it was so nice to be around my family.
and then the craziness of the ex happened. and i almost ended up going to the hospital. freaking cushings. my cortisol skyrocketed and i almost blacked out. i did collapse. that was exciting, but my cousins were there to take care of me. this disease sucks. stress makes me so sick. i get dizzy, black out, fall over, throw up... it's a good time let me tell you!
i ended up sleeping forever from friday- saturday. but i didnt wanna lose any time with my fam so i tried to need as little rest as possible... yeah, that worked. i ended up falling asleep crazy early on saturday. which i needed. and im exhausted today. exhausted, sore, cranky, headachey, nauseas... great day. but im meeting with the disability attorney later to appeal the denial... apparently im not 'sick enough'... yeah. that's because people know NOTHING about my flippin disease. oh well. im gonna raise awareness. we need to... i dont like that this disease is known as a silent killer. so not cool.

but i am blessed. and things are going to get better. they always do. and im not scared. Everything happens for a reason. and there's a reason I'm still here. I may not know why right now... but I will. He has a plan for me. whether it's to be a patient advocate, an event planner, a painter, a candle maker, a cushie awareness raiser, a writer... He has plans for me, and I'm excited to be on this journey, even though some days I just want to die, there are brighter days ahead.

Sunday, October 23, 2011

who knew? i sure as hell didnt...

well.. well.. well...

"there you go again, using your disease to get out of doing anything"

*sigh* this entry may be a little... heated? emotional? but not mean. im not mean.

im not gonna sit here and badmouth you. why the hell should i? i did NOTHING wrong. you on the otherhand... turned out to be some sort of two, maybe three, faced nutso. THANK GOD we didn't get married. why? oh... idk... because you're an abuser and so emotionally messed up... you tell me that the last girl u were with was crazy but... im thinking she wasnt as bad as you made her out to be and maybe your abuse did it to her.
and using my disease as an excuse? really? come on now. since when did u become so cruel? im glad its over. and im not sad. and part of me thinks that maybe it never was real to begin with. maybe i was in love with the person i created. the one i thought u were, the one i wanted u to be. sure, u come and rescue me. and then u appear perfect. and act perfect, make me ur priority and BAM. then u become someone i dont even recognize.
so no. maybe i didnt love you. did i care for u? sure. but i think, honestly, i was trying to prove to myself and others that HA! someone will love me sick and all! but... apparently that wasnt you.

but i realized something today. i dont have to prove myself to anyone.like... at all. and it's an amazing feeling. and once i realized that i dont need to prove myself, i felt this HUGE weight being lifted off my shoulders. i actually think i figured that out a few weeks ago... when i FINALLY cut the cord to someone else. when that cord was cut, i realized... i didnt need YOU either. i dont need to prove myself to anyone. why? because im freaking awesome as is and... if someone doesnt see that, then i dont need them in my life.

i am the 2%. only 2% of the worlds population will have this disease. and im part of that group of unique individuals who get to deal with this. i could be sad and cry, but i wont. ill smile and press onward. and keep kicking the trash out of my life. because i only deserve the best and im tired of settling. so i wont.

besides, i hear single nicci is a lot more fun!

and i deserve someone who will love me in sickness AND in health. who wont be intimidated by my independence. i dont NEED someone to make me who i am. i dont need a relationship to define me. ive never been THAT girl. i like who i am. and how i am. and i dont need anyones approval. and its amazing to be able to say that now.

i feel like there was alot more i wanted to say but, whatever.
im happy
and thats that :)

Sunday, October 16, 2011

This video may be about cancer, but i think the song relates to all of us. Though we may appear strong and that we don't need you... we do.
but we also need you to let us know that you're not going to abandon us...




"I'm Gonna Love You Through It"

She dropped the phone and burst into tears
The doctor just confirmed her fears
Her husband held it in and held her tight
Cancer don’t discriminate or care if you’re just 38
With three kids who need you in their lives
He said, "I know that you’re afraid and I am, too
But you’ll never be alone, I promise you"

When you’re weak, I’ll be strong
When you let go, I’ll hold on
When you need to cry, I swear that I’ll be there to dry your eyes
When you feel lost and scared to death,
Like you can’t take one more step
Just take my hand, together we can do it
I’m gonna love you through it.

She made it through the surgery fine
They said they caught it just in time
But they had to take more than they planned
Now it's forced smiles and baggy shirts
To hide what the cancer took from her
But she just wants to feel like a woman again
She said, "I don't think I can do this anymore"
He took her in his arms and said "That's what my love is for"

When you’re weak, I’ll be strong
When you let go, I’ll hold on
When you need to cry, I swear that I’ll be there to dry your eyes
When you feel lost and scared to death,
Like you can’t take one more step
Just take my hand, together we can do it
I’m gonna love you through it.

And when this road gets too long
I'll be the rock you lean on
Just take my hand, together we can do it
I’m gonna love you through it.
I’m gonna love you through it.

-martina mcbride