“And above all, watch with glittering eyes the whole world around you because the greatest secrets are always hidden in the most unlikely places. Those who don't believe in magic will never find it.”
― Roald Dahl
the world is such a beautiful place, isn't it? full of such magic, wonder, beauty, happiness and loveliness... it's so... wonderful! and magical!
i can't explain why i've been so happy lately. maybe because i've decided to continue to look at the world through my rose colored glasses. i enjoy seeing happy things. seeing the light. seeing the good.
i feel... i don't know. like my senses are becoming much more... hmmm... im much muchier! to quote alice in wonderland lol.
my heart feels full. i feel like im discovering more about myself. i'm becoming more 'spiritually aware'. awakened. im listening more intently. some may think im crazy. some laugh at me. but really? they're just closed minded. and to those who want to laugh and jest, they can go right on ahead and do so, but ill continue to be me and to do my thing.
im just happy. and ill leave it at that. because i feel that if i continue to write all that i want to write right now... itll just bring out the negativity in others and i really dont feel like dealing with any of that. im in too much of a good mood.
im still sick though. my physical body is ailing tremendously, but my spiritual body feels amazing!!
This is me, and the life I've been living. In July of 2010 I was diagnosed with: a brain tumor, a blood clotting disorder, and Cushings Disease. Since then, I've had 3 brain surgeries that left me blind in my right eye,a BLA, I've almost died 4 times, I'm out of work, I've had my heart broken and saw who my real friends are. this is my journey. One I refuse to give up on, no matter how bad it gets... and trust me... it gets bad.
Wednesday, May 30, 2012
you failed.
you failed.
you're a failure
sorry. the surgery didn't work.
you suck.
are you kidding me right now?
is that really your answer?
you're ugly.
you're fat.
you're stupid
you're slow.
you stutter.
you can't speak properly
you're broke
you're friends don't care
you're a burden
people don't care
how often do we hear these things from other people? scratch that. how often are WE the ones telling ourselves these awful things? we're our own worst enemy. seriously. i'm not perfect. i tell myself some of those things too. i know that's something that i struggle with daily. i'd like to blame it all on cushings, but i can't. it's something that i've struggled with all my life. ive always been too tall, too fat, too open-minded, too opinionated, too loud, too happy, too laughy, i smile too much, too everything. well... too damn bad. id rather be too happy than too sad. im going to work on continuing to focus on the good parts of me rather than the bad parts. instead of 'failed surgeries' i wanna look at what went right- IM ALIVE. :D id say that's kind of a big deal, wouldnt you?
ive always said that there is a positive with every negative. isn't it about time that YOU start seeing how beautiful YOU really are? the more you see how wonderful you are, the happier you'll be!
while i don't mind listening to people be upset and vent, because, well, we all need someone to listen to us. lord knows i unload on some of you... whether it be through text, email, blog or whatever, when we start to see what we DO have AS WELL as what's wrong... things don't seem as bad. and then the bad seems less and we're less sad.
i'm not saying i'm not sad or angry or that you shouldn't be sad or angry or whatever but... look at the good. look at how great you are. see the wonderfulness that is you, instead of focusing on the 'failures'. in fact, try and erase that word out of your dictionary. it's something i'm going to work on, so why don't we try to do it together? :]
you're a failure
sorry. the surgery didn't work.
you suck.
are you kidding me right now?
is that really your answer?
you're ugly.
you're fat.
you're stupid
you're slow.
you stutter.
you can't speak properly
you're broke
you're friends don't care
you're a burden
people don't care
how often do we hear these things from other people? scratch that. how often are WE the ones telling ourselves these awful things? we're our own worst enemy. seriously. i'm not perfect. i tell myself some of those things too. i know that's something that i struggle with daily. i'd like to blame it all on cushings, but i can't. it's something that i've struggled with all my life. ive always been too tall, too fat, too open-minded, too opinionated, too loud, too happy, too laughy, i smile too much, too everything. well... too damn bad. id rather be too happy than too sad. im going to work on continuing to focus on the good parts of me rather than the bad parts. instead of 'failed surgeries' i wanna look at what went right- IM ALIVE. :D id say that's kind of a big deal, wouldnt you?
ive always said that there is a positive with every negative. isn't it about time that YOU start seeing how beautiful YOU really are? the more you see how wonderful you are, the happier you'll be!
while i don't mind listening to people be upset and vent, because, well, we all need someone to listen to us. lord knows i unload on some of you... whether it be through text, email, blog or whatever, when we start to see what we DO have AS WELL as what's wrong... things don't seem as bad. and then the bad seems less and we're less sad.
i'm not saying i'm not sad or angry or that you shouldn't be sad or angry or whatever but... look at the good. look at how great you are. see the wonderfulness that is you, instead of focusing on the 'failures'. in fact, try and erase that word out of your dictionary. it's something i'm going to work on, so why don't we try to do it together? :]
Friday, May 25, 2012
cushings- the ultimate friendship test
being diagnosed with something as serious as cushings, really tests the limits of friendships. and im gonna write this out for anyone who's been diagnosed with something life-threatening, life-altering, anything scary... whether it be cushings, cancer, pancreatitis, a mental illness, lupus, pcos, lymes disease, any kind of illness that changes who you are-inward and outward that YOU HAVE NO CONTROL OVER. a disease that controls you. a disease that takes over your emotions, your physical and mental well-being. a disease that makes you a burden to others... or makes you feel like you're a burden to others, or... that makes others TREAT you as though you're a burden to them... ready?
so... ive been feeling like the worst friend ever. why, you ask? nicci, you say... you're always there for me. you're always putting others before yourself. you're fun and you're there and you're wonderful...
ok, so why don't i feel wonderful? why do i feel like im not a good friend? i feel like im not there enough. i feel as though cushie nicci isn't good enough for those of you who have stuck around. but that's not true. and that couldn't be farther from the truth, but when i realize that, ill be happier. and i know this.
i am so happy to have you in my life, those of you who have stuck around, and those of you who have decided to come around STRONGER for me now. those of you who have seen me falter and decided, hey... nicci has always been the strong one, the one whose never left my side... its time for me to do the same... and that's so awesome... like... you have no idea.
but its hard for me to not feel like im letting some of you down. and i see that i have let some of you down, which is why you've chosen to walk away from me. because im not healthy enough to be the friend i once was to you. im not healthy enough to be there all the time. im not healthy enough to run around like i did, to go dancing, to attend events, to drop everything and go. to spend money the way we did, to afford things...
i dont have money. today i was gonna pay to go out using quarters. its sad to admit, but... it would have been worth it... but those plans got smashed because of how sick i got and how much pain i was in. but that wonderful friend of mine... said no matter what hed still love me and just wanted me better and wed make it up. who just wants a cure for me, so ill be better all the time. that's a real friend.
i have real friends. these friends who get mad at my disease with me. like ashleigh, who last night wanted to punch cushings in the face for me.
my twin who doesnt get mad when i just vent to her and then apologize and she tells me not to because i have every right to be mad right now.
i have a truly blessed life. it just hurts that i cant be who i feel like i should be for people. but as mana so lovingly puts it, its time to let people be there for me.
but then when i feel like just saying, ok. let people be there for me... i tend to hear crickets. it gets quiet...
getting sick is the ultimate friendship test. you really see who is going to be there for you and who won't be. who actually cares and who doesn't. there are too many names to write down of who acutally cares. i dont write that list because my memory sucks and id offend someone if i left them out. but my circle knows who they are. and they know that i love them.
and i do. i love all of you and appreciate all that you do.
one day were gonna kick cushings ass.
i just dont think the sickness that is the past week is cushings related. le sigh.
anyway. its a total test this whole being sick thing. those of you who dont get sick, dont get it. you can bounce around and you dont realize how much leaving us behind hurts. you dont get it.
i was always fucking there for you but once i needed you... fuck it. done.
so goodbye.
and you know what the sad part is? i dont even really miss you.
oh well
everyone has a life of their own. i have a life of my own. sure, right now it may not be that exciting. and it may revolve around doctors appointments, tentative plans, my health and taking it easy, but its my life. and my friends dont mind just sitting on the couch, or going with me to the doctors or sitting at a restaurant. they dont mind it... becuase it's spending time together. they dont mind full conversations through texts or emails because that's all i can do... it's what friends are for. and if i have to cancel? they dont get mad at me. or say, she's always sick. or she's using her sickness as a copout. or say something like, im so sick of you being sick all the time. nope. they say, i may not understand, but i love you and i just want you to get better. and THAT means everything.
just remember that words do hurt. that sticks and stones thing is bullshit.
and remember this... we wont always be sick. so if were not good enough for you now, dont expect YOU to be good enough when were better :)
so... ive been feeling like the worst friend ever. why, you ask? nicci, you say... you're always there for me. you're always putting others before yourself. you're fun and you're there and you're wonderful...
ok, so why don't i feel wonderful? why do i feel like im not a good friend? i feel like im not there enough. i feel as though cushie nicci isn't good enough for those of you who have stuck around. but that's not true. and that couldn't be farther from the truth, but when i realize that, ill be happier. and i know this.
i am so happy to have you in my life, those of you who have stuck around, and those of you who have decided to come around STRONGER for me now. those of you who have seen me falter and decided, hey... nicci has always been the strong one, the one whose never left my side... its time for me to do the same... and that's so awesome... like... you have no idea.
but its hard for me to not feel like im letting some of you down. and i see that i have let some of you down, which is why you've chosen to walk away from me. because im not healthy enough to be the friend i once was to you. im not healthy enough to be there all the time. im not healthy enough to run around like i did, to go dancing, to attend events, to drop everything and go. to spend money the way we did, to afford things...
i dont have money. today i was gonna pay to go out using quarters. its sad to admit, but... it would have been worth it... but those plans got smashed because of how sick i got and how much pain i was in. but that wonderful friend of mine... said no matter what hed still love me and just wanted me better and wed make it up. who just wants a cure for me, so ill be better all the time. that's a real friend.
i have real friends. these friends who get mad at my disease with me. like ashleigh, who last night wanted to punch cushings in the face for me.
my twin who doesnt get mad when i just vent to her and then apologize and she tells me not to because i have every right to be mad right now.
i have a truly blessed life. it just hurts that i cant be who i feel like i should be for people. but as mana so lovingly puts it, its time to let people be there for me.
but then when i feel like just saying, ok. let people be there for me... i tend to hear crickets. it gets quiet...
getting sick is the ultimate friendship test. you really see who is going to be there for you and who won't be. who actually cares and who doesn't. there are too many names to write down of who acutally cares. i dont write that list because my memory sucks and id offend someone if i left them out. but my circle knows who they are. and they know that i love them.
and i do. i love all of you and appreciate all that you do.
one day were gonna kick cushings ass.
i just dont think the sickness that is the past week is cushings related. le sigh.
anyway. its a total test this whole being sick thing. those of you who dont get sick, dont get it. you can bounce around and you dont realize how much leaving us behind hurts. you dont get it.
i was always fucking there for you but once i needed you... fuck it. done.
so goodbye.
and you know what the sad part is? i dont even really miss you.
oh well
everyone has a life of their own. i have a life of my own. sure, right now it may not be that exciting. and it may revolve around doctors appointments, tentative plans, my health and taking it easy, but its my life. and my friends dont mind just sitting on the couch, or going with me to the doctors or sitting at a restaurant. they dont mind it... becuase it's spending time together. they dont mind full conversations through texts or emails because that's all i can do... it's what friends are for. and if i have to cancel? they dont get mad at me. or say, she's always sick. or she's using her sickness as a copout. or say something like, im so sick of you being sick all the time. nope. they say, i may not understand, but i love you and i just want you to get better. and THAT means everything.
just remember that words do hurt. that sticks and stones thing is bullshit.
and remember this... we wont always be sick. so if were not good enough for you now, dont expect YOU to be good enough when were better :)
Saturday, May 19, 2012
miss me?
so its been a whirlwind. a sickly unfun whirlwind.
too sick to finish the cushings challenge.
but whatever. i ended up back in the hospital. that lovely c.diff came back with a vengence. but of course that dipshit at the GI place told me i had nothing to worry about. you're fine nicole. thats normal. take another pill.
no. no. no. that's not normal. i dont feel good. this isnt normal. i feel awful. theres too much blood. i shouldnt be in this much pain.
i finally got someone to listen to me. i ended up in the ER, TWICE and then being admitted. i love hospitals. and no, that wasnt sarcasm. LVH was wonderful. big room, comfy bed, wonderful doctors, amazing nursing staff... aside from all the pain... it was great. i slept wonderfully... and they figured out the problem. they put me on some hardcore antibiotics. i had the choice of staying a few more days or going home but all they would do for me was antibiotics and rest, so i went home. bed rest and antibiotics. i was kind of nervous. i had a nice little anxiety attack on the way home but i survived it. mom, annie and i went to dinner on the way home.
im loved. thats for sure. i had some nice flower deliveries. and my friends, my REAL friends, checked in on me, and my cousin jeffrey came and visited! of course my brother and my fam came and visited. my friends wanted to, as well, but i had to turn them away. i was wayy too sick and i too uncomfortable to have them in there with me...
but i do appreciate them being there and wanting to be there. the thought was there, and much appreciated.
ive been touched by the kindness that ive been shown.
ive also decided who can get the fuck out of my life and never come back.
theres the door.
and ive been surprised by who's walked into my life. but i wouldn't change it.
im glad i got sick. it's brought me closer to some pretty wonderful people and im happy to have them in my life. i have some friendships that are growing pretty strong! and i love love love it!
special shoutout to my twin. seriously. like... i dont even think she knows. but she probably does. we have that twin thing. so i dont even need to say it. :)
so back to the sick thing. just because i dont complain all the time, doesnt mean im not sick. what does complaining do for anyone? it just makes everyone annoyed. it makes me feel worse than i already do. id rather try and spread cheer or think happy thoughts rather than wallow in my own misery. i dont pity myself or feel sorry for myself. there's no point. its not going to get me anywhere. it's not going to change what happened.
but it also doesnt mean im not sick.
it doesnt mean im not in pain.
it doesnt mean i dont need to know someone cares.
ive always been the kind of friend that i want to have. but it seems to me that... it's not really getting anywhere. i can count on both hands the number of people i can count on (excluding family) and you know what? thats fine by me :) i like the people i spend time with and the people who actually care. the ones who legit put a smile on my face.
ive been having those horrible headaches again. so i went for my nerve block yesterday. not only did i spend most of the day in the bathroom... my headache went away! so it was a lose/win situation? but i made sure i enjoyed my day... liz came with me. and we surprised csilla with graduation balloons. and i got my dress for ericas wedding. so yay for that.
im super excited for ericas wedding. hughs my date. im so glad hes one of my greatest friends. and im glad i got to spend yesterday with liz. shes so nice to talk to.
im always surprised when people step up. maybe i shouldnt be, but i am. and yesterday it was nice. and i opened up to her about alot. things i dont tell anyone, unless theyre in my circle... aka danielle, twinny, girl with the coolest name everr, bestie, ange, chellbell or my family. so its like... BAM. its nice being able to trust someone. and its nice having an inner circle.
i dont remember what else i was... oh right
so im also on topomax now. i think its helping. its a little easier to form thoughts now. its not a TON easier, but, baby steps!
and... i think i know why im getting so angry... aside from the new drugs. and the cushings. next saturday, the 26th marks the 2 year anniversary of PMC misdiagnosing my tumor. fucking idiots.
this next line is not meant for weak eyes. so.. if you're under 18... dont read it
motherfuckingpiecesofshitcuntwhorebagsihateyouworthlessidiotswhodontknowhowtoreadanimageitsyourfaultimwhereiam
theres more i could say
but they know what they did
:)
im sad im sick today. its the relay for life and i wanted to walk with my mom.
for my mom
im so proud of her
kicking cancers ass
but its 80 degrees out. i wouldve gotten sick anyway, had i not been sick right now.
but shes walking. im glad her friend met her there.
and my aunts there.
and my brother is gonna walk the survivors lap with her. so thatll be nice for her
they're walking team cupcake
and thats my name :(
*sigh* one day they'll be a cure
for me.
for everyone
my disability hearing got scheduled. june 6th. finally. justice.
and now i feel like throwing up. awesome.
<3
be blessed.
too sick to finish the cushings challenge.
but whatever. i ended up back in the hospital. that lovely c.diff came back with a vengence. but of course that dipshit at the GI place told me i had nothing to worry about. you're fine nicole. thats normal. take another pill.
no. no. no. that's not normal. i dont feel good. this isnt normal. i feel awful. theres too much blood. i shouldnt be in this much pain.
i finally got someone to listen to me. i ended up in the ER, TWICE and then being admitted. i love hospitals. and no, that wasnt sarcasm. LVH was wonderful. big room, comfy bed, wonderful doctors, amazing nursing staff... aside from all the pain... it was great. i slept wonderfully... and they figured out the problem. they put me on some hardcore antibiotics. i had the choice of staying a few more days or going home but all they would do for me was antibiotics and rest, so i went home. bed rest and antibiotics. i was kind of nervous. i had a nice little anxiety attack on the way home but i survived it. mom, annie and i went to dinner on the way home.
im loved. thats for sure. i had some nice flower deliveries. and my friends, my REAL friends, checked in on me, and my cousin jeffrey came and visited! of course my brother and my fam came and visited. my friends wanted to, as well, but i had to turn them away. i was wayy too sick and i too uncomfortable to have them in there with me...
but i do appreciate them being there and wanting to be there. the thought was there, and much appreciated.
ive been touched by the kindness that ive been shown.
ive also decided who can get the fuck out of my life and never come back.
theres the door.
and ive been surprised by who's walked into my life. but i wouldn't change it.
im glad i got sick. it's brought me closer to some pretty wonderful people and im happy to have them in my life. i have some friendships that are growing pretty strong! and i love love love it!
special shoutout to my twin. seriously. like... i dont even think she knows. but she probably does. we have that twin thing. so i dont even need to say it. :)
so back to the sick thing. just because i dont complain all the time, doesnt mean im not sick. what does complaining do for anyone? it just makes everyone annoyed. it makes me feel worse than i already do. id rather try and spread cheer or think happy thoughts rather than wallow in my own misery. i dont pity myself or feel sorry for myself. there's no point. its not going to get me anywhere. it's not going to change what happened.
but it also doesnt mean im not sick.
it doesnt mean im not in pain.
it doesnt mean i dont need to know someone cares.
ive always been the kind of friend that i want to have. but it seems to me that... it's not really getting anywhere. i can count on both hands the number of people i can count on (excluding family) and you know what? thats fine by me :) i like the people i spend time with and the people who actually care. the ones who legit put a smile on my face.
ive been having those horrible headaches again. so i went for my nerve block yesterday. not only did i spend most of the day in the bathroom... my headache went away! so it was a lose/win situation? but i made sure i enjoyed my day... liz came with me. and we surprised csilla with graduation balloons. and i got my dress for ericas wedding. so yay for that.
im super excited for ericas wedding. hughs my date. im so glad hes one of my greatest friends. and im glad i got to spend yesterday with liz. shes so nice to talk to.
im always surprised when people step up. maybe i shouldnt be, but i am. and yesterday it was nice. and i opened up to her about alot. things i dont tell anyone, unless theyre in my circle... aka danielle, twinny, girl with the coolest name everr, bestie, ange, chellbell or my family. so its like... BAM. its nice being able to trust someone. and its nice having an inner circle.
i dont remember what else i was... oh right
so im also on topomax now. i think its helping. its a little easier to form thoughts now. its not a TON easier, but, baby steps!
and... i think i know why im getting so angry... aside from the new drugs. and the cushings. next saturday, the 26th marks the 2 year anniversary of PMC misdiagnosing my tumor. fucking idiots.
this next line is not meant for weak eyes. so.. if you're under 18... dont read it
motherfuckingpiecesofshitcuntwhorebagsihateyouworthlessidiotswhodontknowhowtoreadanimageitsyourfaultimwhereiam
theres more i could say
but they know what they did
:)
im sad im sick today. its the relay for life and i wanted to walk with my mom.
for my mom
im so proud of her
kicking cancers ass
but its 80 degrees out. i wouldve gotten sick anyway, had i not been sick right now.
but shes walking. im glad her friend met her there.
and my aunts there.
and my brother is gonna walk the survivors lap with her. so thatll be nice for her
they're walking team cupcake
and thats my name :(
*sigh* one day they'll be a cure
for me.
for everyone
my disability hearing got scheduled. june 6th. finally. justice.
and now i feel like throwing up. awesome.
<3
be blessed.
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