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Saturday, November 19, 2011

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, November 16, 2011


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

no clue? well let me fill you in!

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

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

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

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

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

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

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

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

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

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

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

Tuesday, November 15, 2011



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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

what do u see?

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

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

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

some days
im all of the above
some days
im not blind, just ignorant to ugliness
some days
im strong enough to take down goliath
some days
my happiness is overpowering
some days
im the most beautiful girl in the world
some days
im no longer insecure
some days
i am my sickness
but everyday

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

Sunday, November 13, 2011

a poem

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


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

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

Save me

Send a rope
Send a body
Send a
A smile

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


Believe FOR me
Believe IN me
Believe WITH me

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

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

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

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

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

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

Can it be your time?

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

Prove me wrong

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

my bad..

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

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

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

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

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

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

Thursday, November 10, 2011

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

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

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

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

i think the keto might be working. ive been happier. which is a plus... unless im just on the up part of the cushings roller coaster, who knows. im really tired today. probably because i started the 3xs a day instead of the 2. and ive been running around like a nutzo. i dont remember what i did monday, but tuesday i sat at the polls for Colleen which was awesome. and she won MDJ so that rocks. I was there alllllllllll day... but what a wonderful day to be out! 72 and sunny! :) i was exhausted though. and then yesterday i had Beth and then I attempted to rest before going out with Nicole, which was nice. she popped my chili's cherry... acid reflux nightmare, but soooooooo good! and so nice to be out, lookin good, feelin good and having good conversation. today? today blows. im tired. sore. achey. headachy. dizzy. but... whatever. im glad the only thing i had to do was call to find out where i can have blood work done. i couldnt even move. and there was no way i was driving anywhere today.

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

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

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

Sunday, November 6, 2011

strong enough to break perhaps?

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

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

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

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

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

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

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

Thursday, November 3, 2011

and ill smile anyway

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

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

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

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

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

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

Tuesday, November 1, 2011

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

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

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

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

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

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