harry potter make nicci sad.

if you're reading this, i guess you got the hint that this was about you. or you were curious as to what i was up to since we haven't spoken since april. i guess you do care. 

dearest muggle,

are you proud of me? i know what that word means now. i watched a harry potter marathon over the weekend. watched six of the seven movies. (all but goblet of fire. abcfamily didn't air that one) i can kinda see what the hype is about and why you're obsessed with the books and Harry himself. i had a lot of questions, things i couldn't catch onto because my brain doesn't work like a normal persons but, i couldn't call you. couldn't text you. i had to ask someone else. SOMEONE ELSE. 

i really enjoyed my marathon. but, there was a tugging at my heart during the entire thing. something just didn't feel right. i wanted to cry during the entire thing. my friend said that deathly hallows was emotional, and i did cry when dobby died, i loved that little elf. but... tonight... when i was learning new exercises, i just started thinking about you and harry potter (partly because i had taken a shower and beforehand i had watched a youtube video of danny r rapping with jimmy fallon so maybe that's why you were on my mind, who knows) and the tears just began to fall. 

this wasn't supposed to happen to us. we weren't supposed to fall apart. we were supposed to be together forever. we weren't supposed to let my illness or your boyfriend/fiance/now husband come between us. you were supposed to stand up for me. be by my side. not let him make fun of my illness or my disabilities or what i was going through. but you didn't. you let him dig at me and hurt me. and just say, that's just how he is. ok. so it's ok for people to make fun of my disabilities and until i have a complete meltdown (which i did the day of the NYRF) THEN we will tell him to shut up and apologize? that's what it's going to take?

and then telling me not to come to your wedding because i asked for some assistance for my medical condition and that would be putting you out so you uninvited me. how difficult would it have been for my mom to sit in the parking lot and wait for me while i stood and watched you marry your other best friend? and then i could have kissed you both and went on my way. but no. that wasn't good enough. you just told me not to come. do you have any idea how much that hurt me? 

and now, we haven't spoken since april. 

and before then, when we had our weekend and it was just awful and i told you how i felt that we were drifting apart and i cried and you just told me that we would fix it and that it wasn't true, now look at where we are. we aren't even speaking. i told you that we were growing apart. you promised me wouldn't. that our friendship was one that could survive anything and everything. you had been there for me through EVERY hospital stay. EVERY operation. EVERY funeral. and now? i'm attending the funeral of us. alone. 

it's like i'm the only one feeling the pain of this. i have this huge hole in my heart that i don't know will ever be filled. i can say time will heal this wound, but really? losing YOU? this is the most awful break up i've ever experienced. this hurts worse than when anthony and i ended it, and anthony's pain was like i couldn't breathe. or maybe it comes close to when Al died. and you were there for me through that pain. you sat with me. held my hand. and now? you're gone. you told your husband the day he met me that if he was going to date you, he was going to have to take me, too. it was going to be a package deal. but, you let him come between us. you chose him. it's no longer the three of us. it's you and him. you weren't happy when i started dating, you wanted me to stay single. you are surrounded by couples. no man i ever date will ever be good enough for me. i get that. but you still have to be nice. 

i'm content being single. i was happy being the three of us, but then, you started pushing me out and treating me like the odd man out, like i WAS a third wheel or a burden. you would have all of these get togethers with your couple friends, but wouldn't invite me because i was single and wouldn't fit in and then say, oh, wish you were here. well, how would i be there if i didn't even know about it? you were always worried about how i would be places but you would never invite me. and then when we would make plans to go places, you would spring other people on me and throw my anxiety into a tizzy. so that was fun. so how was that good for me?

i just don't understand. maybe it's meant to be like this. but my heart is aching right now. and it's all because i watched freaking harry potter. i wanted to text you. and tell you what i was doing. and plan a trip to harry potter world. but, i know that will never happen. because, well, you threw me out with yesterdays trash,. 

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*

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.

feeling overwhelmed...

somedays... this disease makes me feel so completely overwhelmed... it's like, cushing's is so unheard of and so rare, that you'd think there wouldn't be anything on it... and then the more research i do... the more info i find and then im not sure if i should feel hopeful or hopeless? i mean... yay. we survive and there's a diagnosis... but the recovery... idk. maybe im annoyed bc i thought that i would be getting better! i didnt know that removing the tumor meant that NOW i would have cushings? i guess it starts with the tumor, and then once the tumor is removed it blows up then gets knocked down? im still confused. i try and wrap my head around it, and once i think ive got it figured out, i dont. it's kind of nervewracking to tell ya the truth...

and maybe it's unfair to the people in my life, because i want them to understand, but then again i dont. i wouldnt wish this on anyone. especially because of how painful it is and how hard it is to come to terms with. im in pain all the time. im an emotional rollercoaster. im irritable. i either dont want to be touched, or i need to be touched and held and cry. it's all... so confusing. sometimes i feel like im trapped in my own head and i cant get out... like it's a puzzle that's missing pieces...

maybe i need to get my puzzle tattoo with josh n george. well, who knows about josh. he's kinda up and down too... but we were gonna get it for autism, but i think it can relate to cushing's too... me and my crabcake... we are medical mysteries...

im glad i have my support system tho... thank goodness for facebook! some people think im crazy and i spend too much time on there, but that's where my cushing's support group is. that's where i have people who understand. and then i blog. and post pictures. and can keep up with family...

my family who is the absolute shiznit! i really don't think id be doing so well without them! they're hardcore there for me. it's awesome. i didn't think my sister and i would be as close as we are. anyone who knew us growing up knew we didn't get along, like at all. and now? i can't see having another best friend :) i can tell her anything and everything and we're there for each other. it's rather refreshing :)
and yesterday... totally got to see family i havent seen in 7 years... i had an anxiety attack the night before bc we hadnt seen them in so long and there was gonna be so many people but... it was amazing. and i had no attack and i didnt even take my anxiety pill! i forgot! it was GREAT! maybe it was because i was with MY family... i felt so at ease, so comfortable and so HAPPY. it's so hard to describe how great i felt... and we ate crap food ;) probably shouldnt have but... man oh man! pizza and wings and calamari and fries... so bad but so so good! it's back to healthy now.

speaking of healthy... starting tomorrow im cutting meat out of my diet, or at least im going to try to. my friend wants me to try a plant-based diet, a vegan diet... but im kind of afraid to throw my body into that kind of shock, so im going to try the vegetarian diet first. we bought hemp milk... its kinda funky but hopefully it helps.

hmmm... i guess that's all for now <3