it's dark here

it's dark here
and not just because it's midnight

everything just feels so
empty
dark
sullen
angry
sad
lonely

i have this vision of what it would be like if i left
seated around the table at my pop-pop's house in wayne
all of my family who've gone before me
al is there
aaron is there
there's ham on the table
pineapple
root beer
everyone is smiling
laughing
i have this overwhelming sense of love
of family
like everything is finally going to be ok
that i'm home.
my family hugs me
i'm at the other head of the table
we're all laughing
and i look up
and there he is
petey-pete
he just stands there.
looking at me.
shaking his head. arms crossed
i always thought he'd be happy to see me
and he just keeps saying
it's not time
it's not your time
you need to go home.
all i want to do is be here
in this home
this paradise
with my loved ones
where the darkness no longer exists
where the pain will stop
where i can be free
i can have thanksgiving and easter whenever i want it
mooch and snickers and buttecup are running around
i mean
normy won't be here
but one day he will be
i'll have al. my alphonso
i'll be surrounded by unconditional, non-painful love
all the time
there will be never-ending laughter
a place no more harm will come to my heart
my body
my soul
a place i can be myself and not feel like someone is going to yell
someplace i won't be made to feel wrong
feel like i'm some terrible human for caring too much
like the knowledge i have due to circumstances beyond my control
make me  a shitty person
that my need to care
my loving too hard
makes me seem like a bad person.
i won't have to have another broken heart
cry anymore tears.
i'll be the one welcoming people into the green house
with the big table
and the neverending lifesavers in the crystal dish
the ugly couch that everyone loved to hate but had the best cushions to sleep on
the rocking chair for the little ones who were lost before they had a time to shine
the cigars for the pops while the played poker
and the pots of sauce on the stove while gram taught me how to make bread
we'd have a never-ending garden of fresh vegetables
i'd be eating radishes with my other pop, just like before
on the deck
and they'd be gross
but maybe they'd taste better in my paradise
everything is better here.
but petey
oh my petey
he's the one keeping me here.
he just shakes his head
and tells me to go back
it's not time yet
that i am loved
and i am missed
but it's not time.
he messes up my hair
because he knows i hate that
kisses my forehead
turns to my family and nods.
they know they've had me long enough.
i have to hug them
i have to come back
kiss my dogs
kiss my grandparents
my aunts
my uncles
my aaron
my alphonso
the sister i never knew.
and then petey
he hugs me tight
he tells me he's here
he's always here
and it's going to get better.
and one day
one day far away
it'll be time for thanksgiving
with extra pineapple.


it's dark here
and not just because it's midnight.

**************************
It's been two years today.
8.9.2017
SGT Peter Kamper, EOW #164

can i have your attention please

no but really?
can i?

i don't think  you've been paying attention.
like
at all.

9 years people.
9.
have you heard a damn word of what i've said?

no really

have you?

i'm not really sure how else to explain things
how many more pictures
how much more detail
i need to give you
to make you try to understand
any of this.

this isn't easy
healing isn't easy
this life isn't easy.

it is a daily struggle to keep going
the pain is never ending
the medication is never ending
literally
if i stop taking it
i will die.

I REPEAT

IF I STOP TAKING MY MEDICATION I WILL DIE.
I
WILL
DIE

that is the definition of life sustaining medication.

look it up.
do the research i've been asking
no begging
you to do for the last 9 years.

have you?
have any of you?

just because i'm smiling
doesn't mean i'm not in pain

a smile doesn't mean an easy day

a smile means
hey
fuck you
i'm going to push anyway

a smile means
hey
i had ice cream
so that was awesome

a smile means
hey
we woke up today
let's keep going

a smile means
we don't want frown lines.

it doesn't mean i'm cured.
it doesn't mean it doesn't hurt
it doesn't mean my life suddenly became easier.

i'm not sure why people seem to think surgeries aren't serious
especially for me
i am the queen of complications
i mean
come on now

my routine ankle reconstruction
wasn't routine
more things to be fixed

follow-up showed
i can't bend my foot
i can't put pressure down

when i say i still can't walk
I STILL CAN'T DO IT.

why do you think i'm lying?

if i say i can't leave the house
i physically cannot leave.
are you going to push?
are you going to pick me up?

yeah

didn't think so

when it comes to visiting
you don't
so kindly shut up

i am not lying
this is not easy

ask any of the people who are here
every day
who see this

do you want me to video this for you?
how i can't get out of bed?
my screaming in the middle of the night?
no?
ok then
so stop

if i say no
it's no
it's not let's guilt you
let's do this
let's do this

NO

drive
visit
do all the things i can't

follow the fuck through

stop with the one days
and start with the todays.

i was visiting you with a broken foot
while on driving restriction

done

d
o
n
e

stop.

pay attention

really

pay attention

i took a year off because i was going to end my life
i was going to end it.
i was done
i was tired of feeling so completely alone
like the entire world had abandoned me
my family
my friends
everyone i loved
everyone
i was alone.
i took a year to find some peace
to gather myself
to try and heal myself

and you know something?
coming back sucks

i think i preferred the quiet.

no one listened
no one paid attention
no one learned

i'm not sure why i kept trying
why i kept reaching
why i kept trying to educate
to help
to care
to keep going

none of it seemed to make a difference

i did
i made a difference
there's that one
i know he's out there
she's out there
and they listened

i'm sorry you're not
but i really hope you start
because i can't make this any clearer.

pay attention
i can't get any more graphic than i have been
but if you want x-rays, MRI reports and doctors notes because it's not really that serious, i'll gladly supply them.

xoxo

it's a new dawn, it's a new day, it's a new life....

so.
i was reminded tonight about my writing, how open and raw and real i once was, and how i had used this as an escape to just let everything out. to raise awareness. to bring about change. to give people hope and to let them know it's ok to be human, it's ok to hurt, to be honest, to be open. to scream, to cry, to yell. to just be.

but i stopped.

i won't say let it fall to the wayside, because that's not what i did. i intentionally stopped. i would blog in my head or say, this would make a good blog, someone should hear it, but no one would. i just didn't feel like i could put it out there. i completely shut down. i still kind of am. or re-shutdown, i'm not sure. could go either way at this point.

i had to stop sharing, stop letting people in. the more i let in, the more i shared myself, the more they left. the more you left. the more was used against me. my vulnerability became a weakness, and i couldn't have that. i am this rock, this mountain, this beacon of hope. i can't be weak. i don't have time to be weak. i have to keep thinking of new ways to inspire people and to not let anyone see the darkness inside of me. i can't let anyone see the holes. but they're there.

by shutting down, i got sicker. and sicker.and darker, and darker. it was to the point i had a plan. a plan, a good plan. and then a plan with my psychiatrist to save me. he and my therapist are on speed dial. i think everyone who has mental health issues should have a plan with their doctors. have a plan to get their mental health back in shape. we need to work our minds, strengthen them. realize that just because there is darkness inside of us, it doesn't make us bad. it just means we need a little more light, and that when the light does shine, it's gonna be bright as heck!

i've been angry a lot. like a lot a lot. life these last few months have been rough. really rough. my relationship took a hit. i haven't really cared about anyone in... 7? years maybe? so to be even in a relationship is a huge deal. this isn't one of those, k. free food and movies kind of relationship. this is an, i can see myself with you til the end of time, relationship. i guess when things go as good as they were, you kind of forget there's a real world out there and then when something happens you're just like oh. hey bubble. *pop* but i mean, if it's broke, you fix it. you don't walk away. that's what love is. it's not like this is anything earth shattering. people get into it. it happens. and they move on. i'm just not an easy to move oner. and he gets that. it's why we work. he knows i have a hard time forgetting. and he's an overthinkiner. we just work. we're perfect. we can go from me being upset to talking about bowel movements to cat videos to supergirl to surgery to did you eat today to flowers. like, we just work. he's my perfect human. be with someone who asks the question, did you poop today? you want someone who cares for your body as much as you do. he is fantastic, even when i want to punch him in the face or pinch his nose closed. <there is a slight chance ive done one of these> he's there. he holds my hand. he ices my ankles. he laughs when my jokes aren't funny. he explains jokes so i'll think they're funny. and when i don't understand something, he doesn't make me feel less, he helps me understand and then we do more research on the subject so we learn even more. he's incredible. i'm truly blessed to have someone who not only likes to learn, but is excited to learn. he wants to experience life with me, wants to go on adventures, and we don't even have to leave the country. we're making a bucketlist of places to go in the US that look exciting. there are so many fun things in our own backyard no one seems to notice.

two friends from college came down yesterday and basically pulled me out of the darkness. they don't know that though. if they read this they will.
i was having such anxiety about yesterday. and then he couldn't come and i was going to be by myself. so the anxiety got worse. i don't leave my house. like ever. every time someone says they're going to make plans with me or we're going to do something, it's one of those up in the air fake plan kind of things. we can't even blame it on my crap anymore because i don't have junk. i'm doing a lot better. i have a broken foot so i can't stand for long periods of time, but whatever. i've been walking and dealing with the pain since december. i'm so tired of the fakeness.
anyway
so i've only really been going to ulta or hottopic. they're literally my safe spaces. i know where i'm going and the people there. or they know me lol. hottopic is where i went the day i wanted to drive my car off a cliff. the people in that store are amazing and i love them like family. they are my chosen family. and ulta? two of the girls there have huge pieces of my heart. HUGE. i can't even say how many times i went in there and broke down into val's arms when everything happened with my brother. that girl is everything. and american candle, i love the lady in the candy section. she just makes me feel at ease. i'm just not comfortable going anywhere else by myself. i'm assuming that's what it's turned into.
it could be all of the bad things that are going on in the world, all of the accidents, the fires, the crime- in our area alone. it's just scary. and i don't know. the trust i have for people in general has just disintegrated. i don't like people coming up and talking to me. i don't like it. it's creepy.
so
my friends were up. we met for lunch and i had no idea they were here to celebrate the 14th anniversary of their first date! GAHH!!! HOW FREAKING CUTE, AMAZING, FANTASTIC, BEAUTIFUL is that?! we had such a good time! it was so nice talking with friends and sitting with people and feeling like a normal human being! talking about college and sports and kids and drinks and life and things that had NOTHING to do with ANY of my illnesses! nothing about surgeries! nothing about any of my crap!!! that was such an incredible feeling! I WAS A FREAKING PERSON TO THESE TWO! A PERSON! I was just Nicci. Nicci from ESU. Nicci from Tri-Sig. Nicci Becca's Little. NOT Nicci with Cushing's. or Nicci with the tumor. I WAS JUST NICCI. these two who knew me for who i was, saw me for who i still am. it was such an incredible feeling. i mean, i am still feeling good. i feel like a new life has been put into my bones. i just, it was amazing. there were no phones at lunch. no nothing. just enjoying each other's company. and i made eye contact with them. i don't make eye contact with anyone anymore. i had eye sutgery and i still have a hard time with it. when i met Anthony Boyle he kind of locked his eyes with mine and i had no choice. that was one of the first times, prior to eye surgery, i had locked eyes with someone, wonky and all. and then yesterday. no problem at all. i'm not even sure if i look the man in the eyes all the time. i try, but i either 1. get self conscious or 2, decide his face needs my kisses. so.
yesterday was phenomenal. and listening to her husband talk about how much he loves her and watching them look at each other? ugh. everything!!!!  i loved the stories about their kids, too!! it was such a great time! i really do have great people in my life.

speaking of great friends, my cousin is pretty much one of the best people i know. one of the highlights of my day is when she calls me on her way home from work. i love our chats! we talk every day and when we don't talk it feels like something is missing. i love that our families are reconnected and she and i are so close. we are. the same. we have a family party celebrating her niece next saturday so im really excited for that. we'll all be together again.

so. i think this a good start to reentering the blogosphere. cheers

********


ive had quite the entry into 2019. i mean... just... wow.

December
a few days after I posted that, I think 2 days after, I ignored my better judgement and walked where I shouldn't have. i let someone decide they knew my body better than i did. in the dark. a blind person. walking in the dark. on a street full of potholes. how could this go wrong? and instead of continuing to disagree, i caved and i walked. and ended up BREAKING my ankle. i mean, BREAKING. tearing ligaments, the whole nine yards. if people would get their shit together i could schedule my foot surgery. yeah. that bad. but. i digress.
never let anyone tell you they know your body better than you. i learned this lesson 8 years ago. i've known this. i've been arguing for myself for years. but this particular night, i didn't. i listened to someone else. and now i'm paying for it. dearly.

a few days later, my brother went to florida to see some friends and was involved in a hit and run. he was the one who got hit. the driver jumped four lanes of traffic, a median, a red light and hit my brother's harley sending him off the road. my brother spent 32 days in the hospital in Daytona. the surgeons ended up amputating the lower half of his leg, below the knee, because they couldn't save his foot. my brother is incredible. he has been in good spirits throughout the whole thing. handling it better than i think most would. well, maybe not most. i dont think you know what you can handle until it's handed to you. he does have an amazing approach to it. he's laughing. smiling. making everyone around him feel better about what's happened to him. it's what we do. he's such a good human.

when it happened, i felt so stuck. i was frozen. i had no idea what to do. my mom was on the floor hysterical. she could barely talk and im not sure she could hear what his friends were saying. i ended up getting information at one point. i just, i dont know. i didnt know where to go or what to do or how to handle any of it. i dont even think i cried until i was at my therapy appointment. i was just kind of numb for a while. and then when i did cry, it was like the flood gates were open. i wanted to be at the hospital to take care of my brother, to fix him, but i was stuck here and i couldn't do anything. so i was a mess. my parents went to florida and were worried about me being home by myself, i do enjoy my alone time, but the boyfriend came the night they left to stay for the weekend. i'm not sure if he made things better or worse. i did enjoy his company, i just wasn't processing anything at that point so i'm not even sure if i was present when he was with me.
then new years came and i was a mess. i didn't want to go to that party. didn't want to get into a car. didn't want to get on the road. people were going to be drinking and driving and i didn't want to get hit. i knew my boyfriend was a safe driver, but i also knew there was going to be alcohol at this party. i didn't want to be the reason he didn't have a good time. we ended up being late because i became a basket case at my house. my mom seemed to be the only one aware of what was going on and made me talk to him about why i didnt want to go. he promised me he wouldn't drink and i ended up having a really good time. aside from hating him most of the night. for not dropping off at the door. for parking so far away. for having me walk in the rain, in the dark, through more potholes with a swollen ankle. i was fuming. so i really didn't want to be there. limped up the stairs, made friends with a girl and talked about harry potter for a good 40 minutes. so then i was comfortable. let the negativity go, made some friends, ate some good food, played some games, got mad again. I KNOW MY BODY. PAY ATTENTION TO ME. STOP. I AM A HUMAN. and then talked politics with the host. i enjoyed that the most i think, even more than cards against humanity. really strange game.

JANUARY
seemed like it was taking forever since joey still wasn't home yet. i really don't remember much about it. it could be when the lighting of the vineyards was and when we met rina and ted. i love them. they're the best. unless that was november. i'm not really sure. i really have no idea what happened that month.

FEBRUARY
joey came home!! that was amazing. then there was valentine's day. that was really special. we went to this really amazing restaurant. had a really nice weekend together. his dad came up one weekend and i got to meet him.

MARCH
KELLY CLARKSON!!!!! i mean, i honestly don't think anything else is going to top that. at all. maggie rose opened for her. it was incredible. we spent the weekend away. it was so much fun! last weekend i went to a salt cave with a friend of mine. if you get the chance, i suggest you do so! it was amazing! if you have AI, take extra salt and hydrate before you go in. and hydrate and take more salt when you come out! i ended up crashing the next day. i'm sure it wasn't just the cave and had a lot to do with everything going on the last few weeks, months even and then the cave and us not having dinner til almost 9pm. i dont even think i ate prior to that. someone doesn't seem to understand i can't do that. i need to eat on a normal person's schedule. i really need him to understand and try and pay attention. i want to be treated like a normal person, but normal people eat food. and most people i know, if they dont eat, they end up sick. it's not just and AI thing. i ended up in the ER sunday night because i crashed so bad and that ER doc was such a piece of shit. he was convinced i drank too much and i kept saying i hadnt drank at all. but please, tell me how i'm wrong, don't test my blood like im daring you too. all i wanted was fluids and steroids. he didn't even want to give me fluids, as i was passing out. if you get dr.cobb at st lukes monroe, request someone else. he sucks. i already have a letter started. so i spent the week recovering because ive felt so shitty. and then i had 3 doctors appointments. bf stayed home from work sunday night t take care of me and then all day monday before he went in. he was pretty scared. this was his first time witnessing it firsthand. he couldn't even sleep until he got me tucked into bed and surrounded me with water and gatorade. he also watched me sleep for a few hours until he knew i was really asleep. we took this weekend off. he needs to take care f himself too otherwise the stress will get to him, too. he works crazy hours, has a hard time sleeping, and spends all his weekends with me. he was hurtin this weekend. i think we both needed it. i had an awesome time with my friends and he slept for almost 72 hours straight. so, we both had good weekends.


i started a gofundme for my brother. you can read the whole story, post it, share it, donate, pray. anything and everything helps. i'm updating it tomorrow with more photos of how well he's doing now. he should be getting his new leg soon!

https://www.gofundme.com/road-to-recovery-for-joe-velardi

an entire year

happiness can be found in the darkest of times
if only we remember to turn on the light.
-Albus Dumbledore

wow.

it has really been an entire year since i've written anything in here. i never thought i'd let this fall to the wayside, but i did. i'm sorry for that. these past two years have been something of a whirwind. my mental health has been taking a beating. i almost didn't make it through 2017. i'm not even 100% sure how i made it through 2018.

in 2017, the darkness was really bad. it had gotten to a point where i had made a plan researched which hospitals i wanted to go to. decided who should get what. figured out what part of my life insurance should go to what charity. i was ready to end it all. i saw no point in being here. some days i still don't. i don't really give a shit if you say, BUT LOOK AT HOW FAR YOU'VE COME! YOU'VE GOT AIR IN YOUR LUNGS! well fuck you then. you really don't get it. if you've never walked a mile in my shoes. never lived with depression, never had someone crack your skull open, never had a new diagnosis about every other week, been to the hospital 2~3x a month because no one will listen to you so you have to diagnosis yourself, shut the fuck up. i don't care. i really don't. i shut down social media last year and it was awesome. i didn't hear a peep from anyone. so, what does that tell you? a few people reached out to my mom to check on me. a few cheecked on me. a lot of the people who had my number didn't say anything though. so whatever. i still reached out to them, still did the checking in. because that's just what i do. i do feel like a shitty friend though. i disappeared and i can't do everything i once did. i can't drive everywhere and spend and buy things for everyone like i once did. birthdays and christmas will kind of come and go and it's like i forget about people. i don't, i just can't afford to celebrate them because i'm trying to afford to live. it sucks. i'd love to be able to work and spend money and do all the things but i can't. medication is expensive. food restiction is expensive. far away doctors appointments is expensive. having a brain tumor that causes you to gain over 100lbs is expensive *credit card debt* losing 100lbs is expensive *cash only for new clothes* <--- but yay for the cushing's weight falling off. medical marijuana is expensive, and it doesn't necessarily work. some of these dispensaries add things and they make this shit so expensive... street weed is probably better and cheaper. life is crazy.

i also spent last year coming to terms with something awful that happened to me. i realized it happened. and i've been working on processing it. i'm a #metoo girl and it SUCKS. it's impacted pretty much everything. it's taken me 4 years to deal with it. FOUR. so many people say, why now? why this? why that? you don't want to think it could happen to you. that one of the strongest people you know, could have this happen. that you couldn't defend yourself. that you let this happen. and yeah, somehow in my brain, i thought it was my fault. in no way did i think i deserved it or enticed it in any way. it wasn't the way i was dressed or anything like that. i woke up to it. but i thought maybe somehow i had let my guard down and hadn't kept my walls up high enough to alert myself that this person wasn't safe. that the person i was in a relationship would turn out to be a predator. i blamed myself.

it took a few years and some major therapy to get through it and to come to terms knowing it's not my fault. still can't really handle the GYN's office. the whole relationship thing is scary as hell. i'm in one now and i don't know how i got to be so lucky to find him, or him find me. i have never. NEVER met anyone as kind, as generous, as empathetic as he is. he is just... i don't even know. i'm not going to call him my knight because that would imply i needed saving but, i don't know. in a way i guess we kind of saved each other maybe. we've shown each other that love is real and it exists and there are good, genuine people in the world. he hasn't walked. i've told him more than everything, and when i can't tell him what's going on, he'll just hold my hand, or stay on the phone with me til i fall asleep. he is my person. and he's a hufflepuff. so there's that.

i know things are going to get better. they get a little better every day, even when they go backward, which they have been. well, they have been the last few weeks.  i spent the first two weeks of december in the ER. November and I think my birthday. i'm running pretty low on spoons right now. i've been running myself ragged trying to get everything done for christmas and this party we're going to tomorrow. i just want everything to be perfect to be introduced to the friends. i made us ugly sweaters for a party on the 9th, but i was in the hospital. so, there went that.

there have been a lot of good things this year though. they've been the little things that i've been pushing myself to keep myself here for.

i had a valentine's day with huey.
i went to dropkick in march with cristian.
in april sissy, huey and me went to CURSED CHILD ON BROADWAY!!! we met the cast and i pretty much cried the entire time.
i also had my right eye recessed so i look like im looking at you now.
i may have done something in may.
in june biffy came and we had a big bbq. i spent almost every day with her while she was here, and if i wasn't with her i was with her kids. it was also mom's birthday. and huey's birthday. and i took a dreams class. and found out i can have kids. i just have to take shots and stuff.
in july i met with the senator to discuss funding for rare diseases and how we can get a better emergency injection for adrenal insufficiency.
in august i was finally able to go back to the center for vision loss. it was really nice to see everyone again. i haven't really been back since because i got sick, but still. nice nonetheless.
September was filled with incredible things. absolutely incredible. I saw Casting Crowns with Becky and Laura. I met Shmoops.
October was my birthday. I had been on this amazing exercise journey. i discovered XHIIT. It's been on the backburner for a bit, but I'm looking forward to getting back into the swing of things next year when my body gets back together. Shmoops and I have been going on long walks and hikes here and there so i want to be functional. oh! we went to homecoming, too.
Novemeber was thanksgiving. probably something else.OH! Hanson String Theory. WHICH WAS ABSOLUTELY INCREDIBLE! an experience i'll never forget.
and now we're in december. which has been a mess. and my depression has been awful. sissy has  a contract in SC and she won't be home for christmas. knowing she's sad makes me sad. i hate her being so far away. the weather sucks. i keep getting sicker and sicker. but not like, dying sicker. my steroids have been a bitch to manage lately. i can't keep my electrolytes up. i keep needing to go get a bag of fluids and then i wake back up. i have no idea why i'm so drained. i want to run the idea of getting a bag of fluids once  a week past my doctors and see what they say. one said it was a good idea. maybe this week she'll agree with me. christmas will be over and her kids will have had Santa visit lol. *sigh*

it feels like so much, doesn't it? my life? like it just keeps... idk. the rain keeps falling. the sun comes out. it always does. even if i don't always see it. eventually it shines. even if only for a few hours.

i know i'm the stars shine brightest in the darkness girl, but my goodness. i'm tired. but they do, don't they?

we do. i mean. WE shine brightest. we just have to shake it off. get sad. cry it out. climb under the covers. sleep. sleep for as long as we need. hug a plushie. hold our own hands, because we can pull ourselves out of this. it's going to be ok. it has to.

there are good people, good things, in the world. we just have to remember they existed before all the bad was brought to light, look in our hearts and we'll find them. good exists. we just have to find it.

/*lumos /*

From a text message. [9.12.17]

I was having a text conversation with someone about different writing styles and I brought up my blog. And a little piece of me kind of escaped. 

I've been going through some things this last year. With people. And it slipped out.

I really need to write a blog about what happened with the 'sister' I once had. No, not my actual sister. But the one who decided to take advantage of my family and then rip out their hearts. Because ya know, apparently that's what people do? Ya know. And I'm about to get heated and say things I shouldn't so I'm going to just let you read what's down there, take a breath and drink some coconut water. 

Btw, Goya and le fe agua de coco with pulp is freaking AMAZING! I strain the pulp out, but holy Hannah Montana Batman! This seems to be the only thing that can fix my stomach issues. Oh yeah, new dx. Yay me! 

Ok.

Here ya go.

⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇

➡ Sounds like your blog is very positive. How long have you been doing it?

My response:

My blog is real. Is it positive? Most of the time. I just don't have time for bullshit. I call it like I see it. If I have a problem, I let you know. I don't tolerate being treated like shit. Or being taken advantage of. And if it's someone I can't talk to about it right away, I go to my private blog. The internet isn't for trash talk. Social media has turned this world into a place where bullies rule and it's not ok. I use the hashtag #TypeWithKindness a lot on twitter. Or try to at least. Our current person who lives in the White House has made it ok for people to suck. He's terrible.

I'm trying my best to develop a backbone. I have one, I'm just too nice sometimes and I care way too much. It's one of my worst character flaws. I'll break my back for people, and then I end up on the floor being stepped all over. But whatever. I'd rather help than hurt. And if people feel they need to take advantage? So be it. God put me here to show people love, and that's what I do. That's why I love social work. So many who don't feel loved, I can let them know they are.

I mean, I have a defense. I can throw walls up so high the birds can't fly over them, but I'd rather keep them down if I can.
But once they've gone up, it takes a hell of a lot to get them down.

I should just copy and paste this. Lol

Since 2010. I think. Maybe 2011.
It's not always consistent. I'd gone into a dark place and just stopped altogether. So when I did write, it was on my tablet, in a private journal. I didn't want anyone to know anything. I just wanted to be kept away from the world.

But now I'm back.
I'm here.
I'm living.
I'm alive.
I've chosen to stay. 

i'm more. not less.

what part of "i am not my illness" are you not comprehending?

no, serioulsy. i'd really like to know.

i HAVE a disease. IT DOES NOT FUCKING HAVE ME!

i don't know how many times i have to reiterate that effing point!

will there be days where i cannot get out of bed, were i feel lie complete and absolute garbage? yes.

will there be days where i feel as though i can dance in the clouds and sparkle stardust everywhere? FUCK YES.

more and more i am riding mothereffing unicorns and shooting rainbow darts at anyone who walks past me, but yall have to realize, when a bad day comes, IT IS NOT GOING TO LAST FOREVER! IT IS NOT GOING TO DESTROY ME! I WILL NOT LET IT!!!

have we not been playing this game long enough to not realize i own this shit? my crown has yet to fall, so stop acting like it's going to!

yeah. i can be in bed for a week. i get it. but stop making it out to be the biggest deal in the world! speak to me like a person. treat me with the respect i deserve. i'm winning this war. have faith in me. i've had faith in every.single.one. of you for all of your accomplishments, all of your battles, how about you do me a solid and do the same for me? i'm smiling through all of this pain. i am pushing for it. i wouldn't trade any of my good days for the shitstorms that follow.

so please. don't discredit me. when i tell you i can do something. stop telling me i can't. don't ever tell me i can't. don't tell me something is a bad idea. i know my body and my health better than any single one of you, i've proven that over the last 7 years, longer in fact. i know my limits. if i think i can't handle something, i won't do it. i'm not a moron. the more someone tells me i can't accomplish something or that it's not good for me or that i won't be good at it, guess what? i'm gonna do my damnedest to prove you wrong.

so do us both a favor, and either support me, or sit back and watch me soar.

you can either fly with me or you can get left behind. the choice is yours. [i really hope you choose the first one.]

i'm not writing this to upset anyone. i don't know how else to get any of it out. i'm so frustrated and so upset and so angry and just so... so tired of feeling like i'm less. because i'm not less. i'm so much more. i'm more than i feel i'm being given credit for.

so, i apologize if this comes off as harsh but, this is me. being real. and not breaking something.

Have you ever?

This started out as a private journal entry... but... then this happened. My mind just started going a bunch of places I didn't like tonight/2am so I thought I should get it out before I had a night like the last. We'll see if it works. I think I need to get back into the blogosphere. I can't let the dementors win. I just can't.

⬇⬇⬇⬇⬇⬇


Have you ever stopped to think about how much of yourself you've given up for other people? How much of yourself you've lost, parts of yourself you'll never get back, for your friends?

I have.

I didn't mean to.

But I am tonight.

So many sacrifices I've made these last 7 years.
Hell.
Much longer than that.
And what do I have to show for it?
Where are those people?
They only exist in my minds eye now.

Have they all forgotten?
Did I imagine all of it? Was it all a dream?
Because it seems as though I'm living in a nightmare now.

So many things I've sacrificed for myself
Experiences I'll never get back
Because it's too late
Not only am I by myself
But I'm broken
Beautifully broken
But broken nonetheless.

Life is harder now.

And the ones I moved mountains for wouldn't even pick up a pebble for me.

What kind of world do we live in
When friendship is about what we can take
And not what we can give?
When a friendship isn't a one-way street where you walk side by side,
But a race to see who can do better than who.

Why aren't we helping each other?
Lifting each other up?
And if this is a race
Why not run it together?

Why am I the only one still on the street?

My heart is aching tonight.
I wish you could understand.
But you can't.
You won't.
You never did.
You just wanted a savior.
A hero.
So that's what I became.

Until you struck me with kryptonite.

Like a Phoenix I rose.
And I'll continue to rise.

I just wish you knew.
You hurt me.
So
So much.

I gave so much for you.
Lost so much.
I don't know if I'll ever find those pieces.

Do I look?
Do I forget?
Do I try something new?
So many questions.
So much xanax.

Have you ever stopped to think? I have.

its a great day to be alive

it's a great day to be alive. you know the sun's still shinin when i close my eyes.

i honestly can't remember the last time i've felt so good.

like... that i've been excited to be alive.

i wake up every morning and it's not like, ugh. i'm alive.

no.

it's like. IM ALIVE!!!!

i have survived the night and thank you Jesus for letting me see another day! i am so blessed to be living in this world, even though we are going through some trials and tribulations, i am so blessed to be Your daughter and I am so blessed to have woken up this morning to live to see another day, to live, to breathe, to inspire.

i may not have figured out my purpose yet, but i am going to wake up every day and be excited about figuring it out!

it hasn't been, ugh. i'm alive. another effing day to get through and deal with shitty people. who do shitty things. and try and fight my way through the darkness. through the muck. the slime. the quicksand.

i'm not crying nearly as much.

i still haven't found my patronus. but the dementors have stopped bothering me.

i'm writing again. which is  a beautiful thing.

i'm also letting things go. i'm not getting as worked up about as much. i'm learning that sometimes it's best just to keep scrolling,.

no one really knows my business unless i post it on facebook. am i sick? have i gotten a terminal diagnosis? has my vision gotten worse or better? does anyone know the answer to that?

nope. not really.

unless you're one of the few who actually take the time to have a conversation with me.

i'm also not settling.

i don't do the no respect thing.

like, i mean, why? yall know we deserve to be respected right? we aren't pieces of garbage, right?

i hope if you're reading this you know how important you are, that you're worth it and that you're enough. you're wonderful, you're beautiful and you should never settle for second best. ever.

oh. and sidenote.

i'm watching my girl. after every first kiss, from now on, we shouyld recite the pledge of allegiance. that's just the way it should be. from now until the end of time.

and if you don't understand why this happens, then either you're too young, or just not educated enough.

and now thomas jay is going to get stung by the bees and my life is gong to be changed. again. so the tears are going to start falling and here goes the end of my happy day.

damn those bees.

i'm going to have a separate post about death and heartache next month.

but back to the amazingness that it YOU. that is US.

i know how hard life is. life is one of the most difficult things to survive.
and our demons? the dragons? the dementors? they are so hard to fight sometimes. it would be so much easier to give up.

and when you're fighting an illness, forget it. especially when there is no end in sight. you get tired of being sick. tired of being tired. tired of the pain. tired of losing the ones in your support system (because they gave up their fight or their illness got to them first), or your friends and family got tired of your fight and left you.

being sick is not an easy task.

none of this is.

depression is hard. being sick is hard. having an illness: emotional of physical is hard.

but that just means we need to be stronger. fight harder.

be dragged into the muck and the slime and the darkness and look for the vine, the tree branch, the sunshine and pull ourselves out of it because no one will pull opurselves out of it.

this is a battle that we must fight on our own.

it's one of the shitties things at could ever happen to any of us.

but it's ours.

we can win.

together.

people need other people.

on october 2, 8 days from now, i'm leading  a team for the Out of The Darkness walk for the Association For Sucide Prevention.

All of the funds raised from this walk will go toward putting suicide prevention programs into schools.

We can raise funds until December. I have $175 left to go for my personal goal. Our team has about $300 left.

Would you mind helping us raise that money to get us to where we need to be?

here's the link:

http://afsp.donordrive.com/participant/NicoleVelardi

If every person who reads my blog, or every insta follower I have, every twitter follower, every facebook friend, donates just ONE DOLLAR, we would have our goal met and then some!!

We all have no problem donating to a cause for someone to get a vacation, or new tires, or fake breasts, but when it comes to sucide prevention, people just turn their heads.

Please don't be that person.

I have been sharing my story with you for 5 years now. We're like family.

Please donate at least $1.

help me help others.

we can all make a difference.

people need other people. x6

are we about to lose our shit?

oh no. i think we're way past about to. i think its already been lost.

im so sick of everyones shit.

so sick of the whining and the bullshit and the drama.

SHUT THE FUCK UP.

do you not realize that there are real problems in the world that are bigger than how big your fucking ring is?
how many selfies you can post on instagram or facebook?
how many bad things you can say about a person?

am i the only one whos been paying attention to whats been going on in the world? around me?

am i the only one who has realized that...

im dying?

that im crying?

that the silence in my world is so loud its deafening?

or that im screaming so loud that no one can hear me?

is that whats been happening over the past few years? is that why youve decided to treat me like shit?

is it true that i remind you of whats wrong in your life? that i remind you of your downfalls?

is it true that im not actually a burden to you, that youre really a sucktastic human being and im really the awesome person that ive always been and your true colors are finally coming out?

is that whats happening?


you do realize its been six years, right?

and you all have lied to me at one time or another.

right?

i mean.

we have those of you who are in the pictures at the beginning of the album. who promised to stay. who never faltered.

but as the days and weeks and months went by, you stopped coming and stopped calling and stopped responding.

and the cys people were cuntbags so there was that. because, ya know, my posting about having a bad day and being in pain and having a boyfriend who cheated on me was my posting about hating the people i loved the most. because that makes sense. right?

dumbasses.

and then you have the people who sent cards who stopped sending cards.

and then you have the people who showed up about two years in. because they thought i was finally getting better. but when they saw i started to decline and then i was no longer of value to them because nicci didnt drink. nicci couldnt karaoke. nicci couldnt drive their drunk asses home anymore, nicci was worthless.

so theres them.

and then you have those who just went away altogether. my illness was just too much anymore. they were sick of me being sick.

uhm. hello!!! do you not think im sick of that too?

or the people who can find time for boyfriends but not for me. because that makes perfect sense. because dicks before chicks. obvi.

and then there are the people who say they care and then they dont. theyre on your facebook. they friend you. they send you event invites when it benefits them so you can buy them stuff. they only spend time with you when you have money and you can pay to do things. god forbid they spend time at your house and you watch a movie or you have conversations. because... you know... youre sick and disabled and you dont have an income like people who work and who are healthy.

do you know who i have in my life?

if you can name yourself as one of those people that you think i would name right here, good for you.

but if you question whether or not i would write your name, we might have a problem.

more than likely we do.


why do you treat me this way?


do you have any idea how dark it is being alone for 12 hours a day? any idea at all?

what its like to be alone, to not be able to drive or to go anywhere or to have anyone to sit with you and have a conversation with you or tell you youre worth it or that they want you to stay or that you matter or that your life is important or that you should not kill yourself?

do you?

do you know what its like to sit on hold with a suicide hotline for 10 minutes and then hang up because youre still on hold and then fight with yourself and try with all your might to give yourself reasons to hold on?

because ive been fighting with myself. for weeks now.

and its just not getting any easier. it did. but then today happened and were back to the beginning.

but thursday is coming so i will keep fighting because panda is coming so i will until then because he will be here. and at least i will have a friend that i can cry with.

i have had a friend crawl out of the wall over the past few days. not sure why, but i believe God knew i needed him. ive been blessed to have someone to talk to and open my eyes to a new way to view my life and the way people are and to a new way of thinking.





i havent been this angry in quite some time.

i am stressed beyond belief.

i just want to punch someone in the teeth.

im sick of being taken advantage of. of people making me feel guilty.

of people doubting my abilities. just because i am sick does not mean i am not longer me. i am still a star. i still shine. i am still an individual. i am still capable of doing things myself. just because i cannot do everything i used to, does not mean i need to be constantly treated like i am 6 months old. people need to start having more faith in me and stop treating me like i am going to die tomorrow.

how can i live if im constantly being treated like im already dead?!



and i think thats why more and more i want to just end my life.


if everyone treats me like im already dead. then what exactly is the point of me living? if im just a ghost wandering through your lives, would my absence even matter? i mean, what good to i do for you? i dont add anything to your existence. i dont matter to your life.

you just say you know the sick girl.

and please. dont attend my funeral because you havent been around during my present.

that would piss the shit out of me off.

that sentence made no sense but you get my point.

and again, no. i am noy going to kill myself.

i am not going to kill myself.

i am not going to kill myself.

it wouldnt be fair to my cousin whos far away right now if i didnt say goodbye to him, since he seems to be the only one whos actually taking the time to be there for me, even when he cant.



please stop being so caught up in yourselves that you forget about the people around you.


people are hurting.


the world is a scary place.



people need other people.

i lost my sight today

well, five years ago today.

5 years ago yesterday i went in for emergency brain surgery. a crainiotomy, to remove my pituitary tumor that was causing my cushing's disease that no one knew i had. all anyone knew was that i had this tumor, that was growing rapidly and was pressing up against my optic nerve and that if i didn't have it removed i would go blind.

funny story about how i didn't go blind before we even knew i had this tumor.

i was walking around with shitbrick (my term of endearment for my loving ex boyfriend whom, when we found out about my tumor told me, this is your problem, i'm out. oh, and when i had my blood clots in my lungs, told me he didn't care if i died in the hospital. i pick winners i tell ya!!) anyway, i was walking around with him at great adventure on flag day in 2010 because i had such an awesome job working for the county that we got that day off and he well, had no life and had that day off as well so we went to great adventure. and, i was walking around on a broken foot because lovely pocono medical center told me it WAS NOT broken. asshats. anyway, ALL OF THE UPSIDE DOWN ROLLER COASTERS WERE OUT OF COMMISSION THAT DAY! so, we we didn't know i had my brain tumor and i was told if i had gone upside down, i would have lost my sight because the tumor could have moved and pushed up hard against my optic nerve and BAM. blind girl.

back to today. i had my surgery and woke up fine. and then the next day, today, well, 5 years ago today, i couldn't see out of my right eye. there was no vision. the nurse didn't believe me, but it was black. more of a beige, but nothing. she did all sorts of tests and nothing. she called dr douche and he came to the hospital right away and sent me for an mri of my head which scared the shit out of my mom because i had JUST came out of surgery and was in icu and that was a NONO. so, my mom raced to the hospital and i told all of the nurses to not tell her about my vision loss because i wanted to tell her. i didn't want her to freak out. but she did. i handled it quite well. i though maybe i'd get it back. i never did. i remember i wouldn't let anyone visit me in the hospital because i just sank. and the headaches were awful. but, they did lots of testing and no one could figure out what happened. the doctor put me on suicide watch and put a bed in my room and i had to have someone stay with my 24/7. i didn't understand why. i wasn't suicidal. he felt really bad. i kinda was just like, i'm alive so... what's the big deal. i still have my other eye? am i allowed to drive? he said yes. so... at least i had that. i mean, it sucked, but, i was ALIVE. oh. and then i found out the guy who was promising to stay by my side while i was in the hospital was fucking someone else. thank you to the girl who decided to text me while i was recovering for that message. that made everything so much easier to deal with. that was a bitch move. you know who you are. but, we're friends now. not me and him, he's a douche. we both hate him. me and her. weird, i know but, whatever.

so. here i am.

oh. before i start that. i had gone to a neurologist  two years later and he said hmmm. and i said what, and he said there it is. there what it? that's where he severed your optic nerve. i can see the slice.

WHAT THE HOLY FUCK?! well, that's lovely. and not like anything can be done because my shitty lawyers took their sweet ass time with the malpractice suit and by the time i wanted to get new lawyers, it was too late. the statute of limitations was up. yay me. but, at least i was granted disability. for a multitude of things. that was fun.

so anyway. here i am. my mom wants me to talk about it. and i don't know what she wants me to talk about. so, i'm just gonna go...

it sucks not being able to see. i look at pictures of myself and i see my eyes looking two different ways and that bothers me. or how bout when someone points out to me that my eye is shifting. because that's something i always like to hear about it. yeah nicole. i can see that you're disabled. gee thanks. i know i look like a fucking moron. you don't need to point it the fuck out to me. that goes for all of you. i know i look different. i know that you can tell i have a headache when my eye shifts. you asking, do you have a headache? your eye is shifting. IS A FUCKING ASSHOLE THING TO DO! HOW BOUT I SAY, DID YOU EAT AT WENDY'S? YOU LOOK LIKE YOU GAINED FIVE POUNDS! do i do that to you? no, i do not. do i comment on how you raise your children? your relationships? do i make any comments about your physical appearances whatsoever? NO! SO WHY THE FUCK IS IT OK FOR YOU TO DO IT TO ME?!

and yes. i get it. my hair gets in front of my eye. do i know that? NO. if it's bothering you, TOO FUCKING BAD! I CAN'T SEE IT! if we're going to be taking a picture though, and my hair is in front of my eye, the kind thing to do would be to either 1. push my hair behind my glasses or 2. tell me but be fucking nice about it.

oh. and if we're going somewhere, walk on my left side. walk NEXT to me. NOT behind me. if you walk behind me, i won't know where you are and my anxiety will be going through the roof! i will be constantly looking to see where you are. and DO NOT WALK ON MY RIGHT SIDE BECAUSE I WILL HIT YOU. i talk with my hands. i have hit people before. it's not my fault if you get smacked. deal with it. if you feel the need to walk on my right side, link arms with me. my friends tend to walk on my right side and then they'll disappear on me. DO NOT DISAPPEAR ON ME. that is one of the worst things you can do to me. DO NOT ABANDON ME SOMEWHERE WHERE I DO NOT KNOW WHERE I AM.
1. i have short term memory loss and i will not know where i am
2. i have anxiety and i will freak out
3. i am like a small child and will feel lost

my douche bag ex boyfriend that i talked about in my blog before this one did this to me and we had and all out brawl.

i still walk into things. i have no depth perception and i think things are farther away than they are. or i'll think something is closer than it is and i'll go to grab something and i'll miss. that's why i don't pour drinks for people at parties or at restaurants. i can't reach across the table and pour. it has to be done for me. i can do it at home, no problem, because i can pick it up as close to my face as possible, but i feel like an ass doing that in public.

i'm still a pretty bad ass driver and i'm pretty good at parallel parking. maybe even better than i was when i could see.

i try not to let this get the best of me because, well, what good would it do?

the past three days have been rough. all these memories. my depression has been in overdrive. i do have a good friend who has been by my side letting me talk to him about everything and i'm really blessed because even though he doesn't get what i'm going through, i've been able to cry on his shoulder.

wow. i can't believe how many times i've cussed lol. i haven't cussed in three months. haha. oh well. Jesus still loves me. Guess i'll have to start over.

but there. now i've talked about it.

i just don't see what point there is to holding onto the anger about going blind would do me. does it suck? yeah. do i want my sight back? yeah. did i think that once i was baptized i'd be seeing again? you betcha. but, that didn't happen, now did it? no. so... there's the story morning glory.

be blessed.

and don't take your health for granted.

you need to read this

i could tell everyone what you did to me. how you treated me. the bad thing that you did.

i could write all the awful things i think when i think of you. how you make my skin crawl. all the thoughts i have when i think of you.

i could write a really nasty blog to get my point across. and i have. a few times. but i've deleted it. because really, what would hurting you do?

LEAVE ME ALONE!!! STOP READING MY BLOGS!!! STOP CREEPING ON ME!!! STOP MESSAGING ME!!! 


I AM NOT YOUR GIRLFRIEND ANYMORE! I HAVEN'T BEEN SINCE APRIL! WHAT GOOD DOES IT DO YOU TO SEE WHAT I'M DOING? STOP IT! GO AWAY! YOU ARE SCARING ME! YOU SCARED ME AND THAT IS WHY I LEFT. DOES IT MAKE YOU FEEL BETTER TO KNOW THAT YOU'RE SCARING ME NOW? NOW LEAVE ME ALONE! YOU DID THIS TO YOURSELF! GO AWAY!!!



whatever i am going through, is none of your business. my life has nothing to do with you anymore. you are NOT my boyfriend. we are not even friends! you destroyed that on your own. so do us both a favor, and just move on!

Jesus said to turn the other cheek and to love our enemies, I am TRYING to do that, but you are creeping me out and making me sick to my stomach. so please, do us both a favor and just GO. and if you still feel the need to read my blog posts, DO NOT comment on them, DO NOT message me about them, JUST GO! this blog was meant for me and my friends and family and for people dealing with cushings disease and depression. not creepy psycho ex boyfriends who get off on stalking me. even that was a low blow. and i'll ask for forgiveness tonight for those hurtful words but, i don't know how else to get my point across. GO AWAY!!!

now, maybe i'll sleep tonight without nightmares.

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,. 

I was baptized yesterday...

So... I did it. I took the plunge.

well, I got dunked is really how it went. It was a decision I know I'm never going to regret. I even gave a little testimony about what brought me to my decision, and had a good little ugly cry while I told the story, but, I won't tell that story here. no... that story will come in time. i'm not ready to write about it. well, i'm trying to write about it. just not here.

i'm excited about my new life in Christ. i haven't been swearing. my anger has been decreased. i've been happier and been living a more positive life... life has been GOOD. am i still sick? yes. i'm always going to have my illness. everyone keeps saying God will heal me. and, here's the thing. unless God is going to grow me some adrenal glands, i'm always going to have primary adrenal insufficiency. can He heal my of my symtoms? yes. can He heal me of my migraines? yes. He can work miracles! and... i was praying for a miracle on Sunday but... it didn't happen. and that made me a little sad. i think a part of me was expecting everything to be immediately better when i got baptized, like everything would be brand new. i know this signifies my starting over, and what i talked about in church was my cleansing of something else, and this is an amazing thing, i just was kind of hoping to get my sight back. and maybe that's silly. but i pray for it every day. and  i know Jesus healed the blind man... i just want Him to heal me, too. but at least my depression is getting easier to deal with and my anxiety is getting easier to deal with, too.

i know i made the right decision. and i'm excited.

the tests however, aren't fun. but i am learning how to breathe through them and how to be slow to speak and slow to anger and to just not let people and their crap bother me. there's a delete key and i'm using it.

i was tested today. when the new doctor said to me, of course you have adrenal glands. everyone has adrenal glands. and i had to respond with, no. i'm pretty sure i had mine removed. and then he said, well, you still produce hormones. and i had to respond with, i don't have a pituitary gland either. and then he tried to convince me that i could take a medication that three of my doctors have all warned me against on multiple occasions.
instead of going off on him i just clenched my fists and nodded and yessed him to death and walked away and told one of the nurses that i would never be seeing him again and told her what had happened. tomorrow and i am calling my regular doctor to tell him what had happened so this can be handled and when i have to go back at the end of the week i don't have to see this guy.

but back to this baptism.

you weren't there. and that kind of made me sad. i know it's supposed to be between me and God. and it was. but... it would have been nice if you could have been there to support me. i mean, i wasn't at your wedding. we're done. our friendship has bit the big one. i just ripped up pictures of us that i found to day. and my heart aches from what you did to me. so i guess i just need to pray that God heals my heart and maybe heals our friendship, or lack there of and that we can go our separate ways without any ill will toward one another. i send you love because holding onto this pain is destroying me.

i'm excited that i got baptized. i love my new church. i hope i can find some way to get involved in it. i'm slowly building up my strength and i'm having better days. i'm still having my bad ones, like today i didn't get up until 3 but i finally SLEPT so that was a wonderful thing and right now i'm not in any pain, aside from the pain that's in my ear and the dizziness that i keep experiencing, but i just chalk it up to the norm and that it's what's supposed to happen. nothing really surprises me anymore.


i send you all love and blessings.

i know. this wasn't too exciting. but, they will be. especially when i'm ready to confess :)

My story: UPDATED: 6.28.16

For those of you who don't know the story behind my getting sick...

I was never diagnosed with Cushings, or even thought that it could be an issue. No one ever suggested it to me, I never researched it. When I started the rapid weight gain, my first doctor told me that I was fat and I needed plastic surgery to correct the problem. When I asked her about my buffalo hump, she told me that I had that because I was fat.
I worked out like a crazy person, three hours a day. I lived off of salads and yogurt! I never thought this would be my life...

In April of 2010 I was starting to have blackouts. I've always struggled with migraines, but these were really bad. I was even forgetting who I was, where I was, how I got places, nothing was making sense. In May, I went to the emergency room because I started to black out while I was driving for work. I asked for a CT to be done on my head. The ER dr just gave me tylenol and told me to go home, that my headache was was just that, a headache and I was just stressed out. He told me to take the next day off of work to rest, so that's what I did. Maybe I was too stressed out from work, I mean, I was a county caseworker, I had a crappy boyfriend. Maybe I was just too stressed out and that's what was getting to me.
Bring me to the following week where I blacked out, fell down the inside steps at my house, went out the front door and went out the outside steps. How this happened, I still don't know, but that's what happened. My brother took me to the er and they said i had a bad sprain so I had to miss work. AGAIN. And of course the rumors were flying. The girls at work were saying that I was missing work because I wanted to spend time with my boyfriend, that, get this, he was going to take me to the beach ON A SLED and pull me around. ARE YOU FREAKING KIDDING ME? DO YOU NOT KNOW WHAT A DOUCHE HE WAS? I swear. I worked with some AWESOME people! So, resting I was. And then I was walking on it. But, I was walking funny. A couple of the girls at work convinced me to go back to the foot doctor, so I did. Guess who actually had a BROKEN foot? yeah. the hospital MISREAD the xray. Nice, right?
So, he casted me and told me to stay home for a few days. AGAIN. I was home AGAIN. They were really starting to love me at work. So, after being at work for a few weeks, I started to get charlie horses in my leg. I called the drs office and the receptionist told me that they were normal and to take my painkillers. Did she put me through to the nurse? No. She decided to take it upon herself to answer my questions. Well, a few days later, I had a fever and was throwing up so I DEMANDED to be seen. He saw me, actually had no idea I was even coming in and took my cast off. Did a pressure test and sent me across the street to have a dopplar done. Turns out, I had BLOOD CLOTS in my leg. So, the dr gave me some shots, taught my mom how to do it and then sent me home. Told us that if I had pain in my chest that I should go right to the emergency room. Well, I was an asthmatic. I ALWAYS had chest pain, so how would I know the difference?
I took advantage of having my cast off. I gave myself a pedicure, shaved my legs and then the next day, we went BACK to the emergency room, where... you'll never guess what! BLOOD CLOTS in my LUNGS! YAY ME! So, I was there for a week. Then, I was home for two because I still had a broken foot and my dr was on vacation and he couldn't clear me to go back to work. So, I FINALLY went back to work and the headaches were starting again. I called the pharmacy where my sister worked and her pharmacist told her to have me call my dr right away. (I was on coumadin and they wanted to make sure I wasn't bleeding in the brain) So, I called my Dr and he had me come in right away to do a catscan. Well, no brain bleed. But, I did have a tumor on my pituitary gland and brain atrophy. What a great day I was having. So, I went for an MRI to confirm what we already knew. My dr, my NEW dr (the one who discovered the blood clots, the brain tumor, the man who, in essence, SAVED MY LIFE, Dr. Degler) had put a call into the neurologists office and set me up with an appointment to see him in a week or so. I can't remember. What I DO remember is having a headache so bad that I had my parents take me to his office and FORCING him to see me. (It didn't hurt that his nurse was  my lifelong best friends mom) So, he saw me and do you know what he told me? That THE HOSPITAL MISREAD MY CATSCAN! The tumor had been there the entire time! He had no idea how they hadn't seen it and it had continued to grow! (now we're in July) He gave me a shot of tramadol and then gave me a list of tests that I needed to have done. He told me that I had plenty of time to have them all done.
Yeah... so much for that theory. 

He called me around 7 that night and told me that I had an appointment on Friday with the neurosurgeon because I couldn't wait. The tumor was pressing on my optic nerve and I was lucky that I hadn't gone blind yet.
*Funny story. As I was walking around on my misdiagnosed BROKEN foot, I had gone to six flags and ALL of the upside down roller coasters were not working.*

So, I met with the neurosurgeon and he told me that there was a blood test I could do to see which kind of tumor it was to see whether or not it had to be out within the next three days. I failed the test. So, I needed it out. I woke up fine. Then the next day, I had no vision in my right eye. (Later we would come to find out that he had nicked my optic nerve. ) I was in the hospital for 13 days. Shaved head. Blind. But making friends with all the nurses. Oh, I had had a crainiotomy. That's the way he decided to hack into me. (Because of what he did to me, he has since retired)

He sent me to his brother in law, the endocrinologist, who was worthless. He told me that there was no way I could have cushings. No one had cushings. And that I was just fat. I needed to stop eating. Gosh, I just love these doctors!

And then I come to find out that the tumor isn't gone! First, he told me that the MRI was completely clear, that he got it all and that it wasn't going to come back. But, I wanted a second opinion. We sought out a new neurosurgeon at Thomas Jefferson University Hospital in Philadelphia and found Dr.Moshel (who has since moved to a different practice). He was a godsend! He did a new MRI on me and found out that I still had a tumor, that the MRI that Dr. Daneshdoost (old guy) did still had a tumor on it and that this one had grown and wrapped around my carotid artery and down my sinus cavity. He was going to save me! He and Dr.Degler had directed me to Dr.Vengrove at LVPG Diabetes and Endocrinology and he was a godsend! He listened to me, he diagnosed me with cushings, he had no idea why no one didn't before. His entire staff was so kind and caring. I actually started to cry when I met him because I finally met someone who was listening to me. I finally had a team of doctors who were going to work together who were going to save me! So, I had my second surgery in April, a transphenoidal sinus surgery. He had to leave some of it in because if he didn't and pulled it the wrong way, I would have lost all facial movement. Our next step was Proton Lindic radiosurgery. Well, it killed my tumor, but didn't kill the Cushing's. I had to wait two years to see if it worked. Nope. So, That brings us to December 6,2013. The day I supposedly got my life back. I had a bilateral adrenalectomy. (had both of my adrenal glands removed) You can't live without your adrenal glands so now I'm living on replacement hydrocortisone and fludrocortisone. The weight started to fall off, but now I'm at a plateau. I still feel like garbage. Some days, I wonder if the surgery was worth it, even though, I know that it was. The Cushing's is gone. I'm praying that it stays gone. I don't say I'm cured, I just say that I'm in remission. One day there will be a better cure for Cushing's than destroying us. I can't work. Some days I can't even get out of bed. This disease is nasty. And now? Now I'm primary adrenal insufficiency, which is scary in itself. This disease could kill me, too. Some days I wonder why I was chosen to live this life, but if I keep sitting around and wondering why, I'll never live. So, I just have to keep pressing on. One day there will be a cure. I just hope that maybe my case was one that teaches the doctors something new, maybe helps them find something that can help them find that cure, or maybe help someone who is struggling with this disease better understand it and be able to get the answers that they need.

UPDATE:

So, it's november and if you've been keeping up with my blogs you know that i posted one about the day i lost my sight... well... guess whose sight has gotten a hellua lot worse?

in september, i had noticed that i needed to start taking my glasses off to use my phone. scratch that. BEFORE that even happened, i came out of the shower and almost screamed when i saw my face in the mirror. my bad eye, the blind one, the right one, was COMPLETELY SHIFTED TO THE RIGHT. LIKE ALL THE WAY. LIKE IT WASN'T MOVING. well, it did move when my mom told me to look to the left, but it was STUCK. i was completely freaked out. i was also experiencing severe eye pain. to the point where i was eating dilaudid and tylenol 3 like candy. it was bad. so i made an appointment to see my internist to see what he thought. he was no help. at all. he actuallly made me feel worse. i left there with a higher pain med rx and feeling defeated. i actually started to cry when i saw my other doctor. just... completely lost it.

ANYWAY

i went home feeling sorry for myself, and the pain meds didn't even work! so, i went home cried some more and then BAMO a few days later, i wasn't seeing anything. my GOOD eye completely dilated, my eyelid drooped 3/4 of the way down and i had to walk using my cane. my mom called my neuroopthalmologist and he had me come to philly right away. they ran some tests on me and i was admitted to the hospital to make sure i didn't have an aneurysm or a new brain tumor. exciting right? well, none of that BUT i DO have third cranial nerve palsy. what is that you ask? it's when your eye has a stroke and blood and oxygen can't get to it. tcnp is one of the worst ones to have because it affects all of the muscles that makes your eye look up, down, left, right and the eyelid. i am typing this with my eyelid taped up. it's the only way i could do it.

i can't see my lap top anymore so my mom got me this nifty tablet and her friend got me an ebay gift card so my aunt ordered me a case that stands up with a wireless keyboard. pretty fancy, huh? at least i can attempt to start writing again! this is killing my back though...

back to my story

so, i went back to my internist for the pain (ny sister drove me. i'm on driving restriction until this clears up... which we're hopeful it will...) and he put me on morphine which seems to be doing the trick. for the headaches at least. and the eye pain. i still have break through ones, so for those, i'm allowed to take my other stuff. basically, they need to legalize medical mary jane in PA. idk if it would help me, but i'm willing to try anything at this point!!

on this new journey, i did meet the awesomest new eye dr. he specializes in nerve palsys. he gives me new eye exercises to do every time i see him and he helps us keep the hope alive. if my palsy doesn't correct itself by next october, there are surgeries i can have to lift my eyelid and reposition the bad eye. so.. there's that.

  we even took a creepy halloween selfie because we were both dressed up at my appointment. seriously, how many doctors do you know that do that? i truly have been blessed with some awesome medical care!

so, i pretty much always look like i'm winking at you. my youngest nephew, he's 3, came over to the house and it was the first time they had seen me since all this had happened, he just kept on winking at me. it made me sad. it was cute, but it still made me a little sad at the same time. i really can't explain it.

i've been really sad a lot lately. i know i'm blessed. and people have been coming out of the woodwork to support me, flowers, birthday surprises, and it's been wonderful but ya know... it's like... when is the shitstorm gonna be over? when is it gonna finally be my turn to relax and not worry about my health and just say, ok. i'm ok. life is good. i am free. i can see again. no worries.

when? everything was going so well for me! it doesn't hurt that i have pretty much the WORST COLD EVER in the history of my life right now and i have to be super cautious that i don't go into adrenal crisis because i have a compromised immune system. damn you cushing's/adrenal insufficiency!! i just cannot win these past few months! at least i'm getting to spend more time talking to my best friend. and i have had some pretty good things happen to me. i do have a good life. it's just, i'd rather not be a sick person. i'd rather be healthy and working. and be complaining about my job instead of the fact that i'm losing my sight. or however you'd like to look at it.

i stayed home for the first  week. i let it take me over. but then i said, fuck this shit. i have a life to live. and then i slowly started going out and going to the store with my mom and my sister and got practice using my blind girl stick. restaurants were another feat altogether. i refused to go out to eat. i think my first time eating out was Halloween at my friend's wedding. i just kind of went for it. i was so nervous. eating was/is pretty difficult. i have no depth perception and well, i can't see what i'm doing.

i still trip over things. so if you're with me you NEED to tell me when there are things in my way or if there is a step. if you are the ONLY one with me, you need to stand on my left side and let me lock my arm through yours because i need to have a sight guided escort at all times when i'm out and about. because, well, duh. and don't walk too fast. i can't keep up. and if this is too difficult for you to comprehend or to assist with, then, we don't have to hang out. i already have friends who don't hang out with me because i don't have money and because i can't physically do what they do and i can't drive so... really... are they friends? that's a damn good question.

anyway. this tape is hurting my eye so i think this is about all the update i can muster. but, i think i did pretty good for my first time typing since the whole palsy thing and not being able to see this ghetto computer! (i can't wear my glasses because i can't see the screen with them on so everthing is kinda blurry but kinda not}

xoxo. livehard.lovestrong.never EVER lose hope!

UPDATE!!! 6/28/2016

hello my lovelies! so, would you like to know where i am now? almost a year has past and i am a completely different person! i never thought i would be where i am right at this very moment, but i am still alive. i am still breathing. and guess what? 

MY EYE IS OPEN!!!

It started happening on Christmas eve! merry christmas to us! it was beautiful! i was even able to wear makeup! it's just been getting better every week! 

i have had days where it would swell and close back up but, thanks to my amazing opthamologist and the girls that have been working with me for vision therapy, i have been making leaps and bounds and i am happy to say that I AM ALIVE AND I AM SEEING AGAIN!!

the picture on top of this one is what i look like as of right now :)  

this collage is my journey over the past 6 years and what you all have stuck by me with. what we all have been through together and what you all have been reading up on.

i know i havent been posting much... really nothing since i posted almost a year ago. im going to try and change that.

if you guys need me, hit me up on insta @colebear06 and ill try and guide you the best i can <3

This needs to be said.

ok. so, y'all know how completely, wonderfully, "refreshingly honest" i am, right? well, get ready. cause here it comes.

if there's one thing i can't stand, it's negativity. i really can't stand someone who's negative all that time. life really isn't all that bad.

but nicci, what about you? what about all the negativity you spew?

i know. i suck. i hate that about myself. no. no, i really don't. i don't hate anything about myself. and do you know WHY that is? because i am a bowl full of AWESOME that's why! even when i was DROWNING in my depression, deep down, i knew that. i knew that i was worth it. that i was worth someone's time. that i was worth the effort. that i deserved to be loved. i struggled with the will to live, but i knew that i was awesome.

doesn't really make much sense, does it? i know. but NEWSFLASH!!!! DEPRESSION DOESN'T MAKE SENSE!

and for you fuckers who say that you CHOOSE to be depressed? here's a nice bowl of go fuck yourself because NO ONE CHOOSES TO WANT TO DIE. NO ONE CHOOSES TO FEEL HOPELESS. NO ONE CHOOSES THE DARKNESS TO WASH OVER THEM.

do you really think that if i had a choice, i would feel like this all of the damn time? fucking assholes. seriously. that's what you are. did i offend you? GOOD. I DON'T GIVE A FLYING FUCK.

and here's the kicker. i'm feeling damn good about myself right about now. i am not caring what anyone thinks of me. i am loving my beautiful self. i am not letting the darkness consume me as much as it was. and do you know WHY that is? i am not CHOOSING anything. i am taking some really good shit! that's right! i am on some good holistic medicine and it is working it's magic on me and i am not feeling so down about my life. so of course, i am gonna see negativity and want to slap it in the fucking face!

but, here's another thing, even when i was drowning, i was still trying to save people. i didn't want anyone to feel what i was feeling. if you've never dealt with depression, and i pray to God that you never do, you won't know what it's like to feel like you're never gonna get better. that your life is over. that there is no way out. that you're suffocating. that you're drowning. that there is no sunlight.

but on the days where there is that little glimmer of sunlight.... you dance. and you dance with all of your might and you hold on for dear life because let me tell you friends, that little bit of sunlight doesn't last very long and then you're back to feeling like you're drowning again. the darkness takes over and you feel like the world is going to end.

and now? now i see sunshine. not a lot of it, but i do see it. i've always known how incredibly blessed i am. do i know why i got sick? no. but maybe it was God's way of telling me to slow down. to protect me from something else. who knows. only HE knows. and you know what? for now, that's ok, i've been beaten. i've been almost raped. i've been cheated on. i've been left. my fiance told me he didn't believe that i was as sick as i said i was, that i was FAKING my brain tumor, even though we started dating WHILE he was visiting me IN the hospital AFTER my SECOND brain surgery and he proposed to me TWO DAYS before my RADIATION. i've been lied to. i've been left for dead. i've lost part of my vision. i've had three brain surgeries. i've had blood clots that almost killed me. i've had cushings disease that tried to kill me. i now have primary adrenal insufficiency which, if not treated, can kill me. i have ptsd, anxiety, depression, mood disorder, seasonal affective disorder, occipital neuralgia, medial nerve damage, tennis elbow, golfers elbow, cognitive delays, traumatic brain injury, chronic migraine, and the list goes on. oh, and i can't work. not sure if i'll ever be able to go back to work. so please, tell me how bad your life is.

my life is so incredibly blessed it's not even funny. even in my darkest hour, i prayed. i prayed for someone to save me. none of my friends seemed to want anything to do with helping me, so he sent my angel, my mother. and she saved me. she stopped me from swallowing those pills. she stopped me from killing myself that night last year.



do you know what else he did? he gave me a csilla. someone who has stood by me since the 5th grade and has consistently checked in on me. someone who has shown me the meaning of true friendship. someone who is proud to call me her friend. someone who, all of her friends know who i am. this girl even calls me her HERO! who does that? this girl has a piece of my heart that i'll never want back. i'm so honored to be standing up for her in her wedding next year as her maid of honor. this girl is not just my friend, but my sister. we share most of the same beliefs, we pray to the same God and we believe in the same love. i'm so excited to have double dates with her! our guys finally met at her superbowl party and while they didn't get to talk much, they have a lot in common so i know our double dates will just be wonderful. i'm excited. and i'm so blessed to have her in my life. she has stayed up late with me many a night to talk me off my ledge, most recently as last week when i was bawling my eyes out after a certain situation erupted and brought chaos to my life. she's a godsend. a true earth angel.

life is not that bad.

oh. and there was the whole, meeting Jamie Tworkowski from TWLOHA. but that's another blog for another day. that man has saved my life many a day. He's amazing. and I met him. and... it was better than meeting HANSON. SO. MUCH. BETTER.

but yes. i can't stand negativity. if you think your life is so bad, change it. you're the only one who can control your situation. unless you're clinically depressed. no one chooses that. depression chooses you.

and come to terms with your depression. if you have thoughts of depression, sadness, inferiority, feelings of hopelessness and despair and they just won't go away... it's not a bad thing to ask for help. there's no shame in that. i see a therapist every week. i have been since i was 16 years old. i'm not ashamed to say that.

yes. talking to friends helps. but sometimes, you need more than that. i'm always willing to listen, but i can't save you. and i can't always help you. i'll be honest, i've got A LOT of shit going on, but i'll always listen. sometimes i think my friends don't want to tell me about what's going on in their lives because they're afraid of what it will do to me emotionally. that and, they don't want to hear the truth. but here's the thing, i've never been the, there there. it's all gonna be ok. kinda friend. no. i'm gonna tell you how it is and that's just how it is. yes, i will tell you that you are a bucket of awesomesauce, because you are. but the minute i see you settling, or see you living a life that you shoudn't be, once you ask me for my opinion, believe you me, you will get it. Csilla knows that. that's one of the things that she says she loves about me. but, if you can't handle that about me, then we don't need to be friends. i think that my friends, they may not say it, but, they appreciate it about me. anyone who knows me, knows how "refreshingly brutally honest" i am. i won't change that about myself. ok, so maybe i could tone it down sometimes, but, whatever. you either handle me, or you don't. man up.

so, i end with this, find your blessing. even in your darkest hour. none of us want to die, we just want to be saved.

and when you say that dying won't solve your problems, well... that's another story for another day. but i'm feeling pretty darn good so i won't go down that path. but i could start a whole nother argument for that one...