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Tuesday, July 16, 2013

running with the bulls

sometimes i think this disease just gets harder and harder to deal with.

the funny thing? i knew it would be. "it gets worse before it gets better". that's what everyone's been saying. the doctors, the people in my support group... i kinda knew what i was in for. but COME ON! this is freaking RIDICULOUS!!! ESPECIALLY that i'm not on the path to redemption. i'm not on the healing path, i'm on the path to another surgery. i'm on the path to hey, we THOUGHT we fixed you, but we didn't so... let's try something else. let's give you some medication to tide you over until we can pop out your adrenal glands, too. great. oh, and you know what's fun about that? i could die. yep. if cushing's didn't kill me, i could die from having my adrenal glands removed. how lovely. it's called an adrenal crisis. your body NEEDS them to survive. and i won't have them, so i'm going to be relying on drugs to get me through. great. more medication. part of me doesn't want to have the surgery and just say fuck it and continue to feel like shit the rest of my life. let the disease win and destroy me even more. let me waste away to nothing. i don't want to risk death. i've cheated death 4 times already, why take more chances? the old nicole was a risk taker. the old nicole would've laughed in its face and said bring it on. this nicole? is a chicken. this nicole kinda likes living. well, most days anyway. this nicole is scared to death of the thought of an adrenal crisis. but, when i posted about it in my support group, i did hear good things from people who have had their pituitary removed as well as their adrenal glands and they are doing just fine and haven't had an adrenal crisis... so that gives me hope. i've also read stories about people who've had an adrenal crisis and when it's treated properly, they're fine. i may just be overreacting, but this is my body we're talking about, this is my life. and if you've been paying attention to me at all, you've seen that it's been completely fucked up by doctors in the past 3 years and this disease has destroyed me. so i'm allowed to be skeptical

and i'm sick of people telling me how to feel or what to think or how to act. shut up. are you walking my path? has this happened to you? you don't know what's best for me. you don't know what it's like. you may think you're helping me, but really, you're just pissing me off. and people wonder why people with a chronic illness have a negative attitude, it's hard to stay positive when you have people down your throat telling you how to live when they have no idea what it is you're going through. you may think you have an idea, because i tell you a little bit, but until you're living MY life... you have no idea.

i went away this weekend. it was wifey weekend. i went to jersey friday night. it was rough. my cousin came over in the morning, and at first i told her not to come because i felt like such garbage. but then after moving around a bit and taking some medication, yay for drugs, i started to feel better and let her come over. we had a nice time conversing. but then she left and i had to take a shower. some days, i dread the shower. showering HURTS. it takes so much out of me. and friday, was one of those days. my hair hurt. but i had to do it. had to get clean. had to push myself so i could go to jersey friday and enjoy, or at least try, to enjoy myself. i hate that i have to do that. TRY. why can't i just DO it. why is it so difficult for me? oh right... i remember now. because i'm not normal anymore. well, i was never "normal" but now i'm a cushie. yep. that's part of what defines me. not my eyes, not my smile, but my cushings. anyway, i managed to shower and get all prettied up for my trip. and i got there and it was lovely. for some reason, being around the two of them just lights up my life. there was no try. there was no sickness. it was like... cushing's didn't exist. i forgot i was sick. i mean, they walk a little slower with me, and a little ahead if they're on my right side so i can see them... but i get to forget for a while. and it's magical.
they took me to medieval times. i love that place. it's so much fun! i love the show, the joust, the knights, the horses, the sword fights... and the food is great. i had to box mine up because they give you so much (one of the benefits of cushings is that you have no appetite. you're just a fat anorexic). the drinks were good, too. i didn't drink, drink. everything i had was non-alcoholic. love me some pina coladas! our knight won, which was a bonus. and petey bought me a faerie to add to my collection. i didn't expect that at all. it really touched my heart and i cried a little bit. she's beautiful and she's sitting above my bed, watching over my room. i named her aurora. i just looked up what it means and it was the name of the Roman Goddess of the morning. maybe she'll help me become a morning person. so now i have an aurora, a bella, a persiphone and a cornelia. so if you're struggling with what to get me for my birthday in october, a faerie is a good idea. but make sure she speaks to you, don't just get me any old faerie. she really has to be a GOOD faerie, one that makes you think of me. like aurora, i fell in love with her. bella, she's me. cornelia, she's a mix of me and my grandmother. persiphone, was a gift and raven said that as soon as she saw her she knew that she belonged to me. wow, talk about getting off track. so friday night was a good night. and i have my own room there, well, i share it with the cat, which is fine as long as i take some benadryl...
saturday we started early. we ran some errands, went shopping, and then wifey treated us to mani/pedis and mini chair massages. they were much needed and much appreciated. after our nails we went home and petey was waiting for us. we were going to see an early movie, but we took too long so we ended up going to mr.sushi- omg BEST SUSHI EVERRRR and then petey took us to see despicable me 2. i think i laughed louder than anyone in the theatre. we got home a little before midnight. i did pretty good.  i didn't nap at all, which is unlike me. i usually take a 2-3 hour nap during the day. i did start to nod off but, we got some wake-up wraps at dunkin and i had some decaf coffee and that seemed to help. so i survived saturday.
sunday is a whole other story... i crashed and burned. horribly. there was a pancake breakfast that her emt squad was putting on, but i couldn't go. my cortisol was so all over the place that i had a hard time sleeping saturday night and there was no way i would be able to function in the morning. so i stayed home and rested. we went out to breakfast which was delish because i got the same thing i always get when i'm down there- taylor ham, egg white and cheese sammich, mm mm mm! then we went to petsmart to look at puppies and then it was home. we were gonna work outside on the house but i kept falling asleep in the car so i said i needed to take a 20 minute nap. and then it was 4 hours later. smh. 4 freakin hours. i felt bad because i wanted to help, but they were so understanding. i woke up to find wifey standing over me, making sure i was ok. so i woke up, kinda of out of it, lacking energy, not really ready to move. or really able to. but i did. we were having dinner at her parents house for her sisters birthday. so we got there and i ended up almost falling asleep on their couch. there was no way i was driving home that night. her mom's not in good shape either. the two of us were quite the pair that night. dinner was delish. her dad is quite the chef. i love being there. my other family. they're so wonderful. i hate that i was crashing so bad, though. but they were really understanding. we all watched a movie together after dinner, i don't know how i managed to stay awake for it, but i did. we went home and i couldn't even stay awake for anything. i just brushed my teeth and said goodnight.
then morning came. i got ready to go and wifey and i said our goodbyes. big mistake. i should've stayed at her house and slept until she got home from work and left then. driving home was dangerous. i kept nodding off. i was swerving. i was scared. the fatigue took over. cushings took over. and it was not good. thank god there was a rest area that i could pull into. i slept for about 20 minutes and then i started freaking out that someone was going to smash my car and steal me. yay for anxiety. i made it home in one piece. my parents had offered to come get me sunday, but i didn't want to miss birthday dinner and i thought i'd be fine to drive on monday. when i told wifey what had happened monday, she was not happy. so we're gonna figure something out for next time. i think i'm just going to end up sleeping all day and then driving home in the afternoon because that would be safest.
i don't want to say i overdid it, because it felt so good to be normal. to feel normal. to not feel sick for that day and a half. and then sunday i was reminded, oh hey nicci. don't forget, you have a chronic illness. you're not allowed to have fun. you have to be bedridden for a while now. you're an idiot if you thought cushings was going away.
so it's tuesday and i had physical therapy and that nearly killed me. i'm so sick of feeling like this. i'm just ready to get better. i'd like it to be my turn. i'd like to be able to work. to be able to run around in the sun. to chase my friends kids. to do yardwork. yes, i said it. to go swimming. to take off and go to the shore with my friends and not have to think twice about it. to be able to say, yes, i will be at your brothers memorial service, not, it all depends on how i'm feeling because i can't guarantee that it'll be safe for me to drive there. like seriously. i want to go back to being a good friend.
speaking of being a good friend, i ripped photos off my wall today. that was refreshing. i figure, if i haven't seen or spoken to you in over a year, or you've been a douche to me, you're picture's coming down. so that was kind of a good feeling. i was rather productive today.
i ran with the bulls this weekend. i kept up. or i tried to. but i survived. barely. i'm learning my limits. i've always kinda known my limits, i just feel bad letting people down. that's why i don't like to go anywhere because i don't want to hold people back. but, they got a firsthand glimpse into my life and what i go through when i do too much so... idk. i feel bad but, i'm just glad i got home ok.
i did have a good weekend. the only thing i'd change, would be me. i would've rather been someone else. i would've liked to have been a healthier version of myself. maybe a version that they would've liked better but, they seem to enjoy this version. i don't think they'd trade me for the world. and that means everything. sick or not, they love nicci 2.0

Tuesday, July 9, 2013

if i didn't have cushings...

ok. so, i need to write a happier blog. yesterday's was kinda ranty and angry and sad.

i cried alot today. i cried pretty much from the time i woke up til about 7pm. that's a whooooooooooole lotta tears. idk what was coming down harder, the rain or my teardrops. and when i say i was crying, i don't mean that my eyes were leaking, i mean, they were leaking, but i mean gut-wrenching sobs. i was shaking i was crying so hard. i had angels riding in the car with me, that's how i made it home. there's no other explanation because i was pretty much blinded by my tears. al was with me. i know he was. i don't care if you believe me or not, but he was. the songs on the radio proved it. first i asked him to get me home, and then i heard wanted by hunter hayes and then i heard clarity by zen or zed or whoever it is.
but anyway...
so i was talking to jason, because he tends to make me feel better, and he's gone down this road, a different type of this road because my case is more complicated than his was. and i said to him, this disease sucks, but it gave me you. and i smiled. a real genuine smile.
and you know what? this disease gave me alot of good people. a whole lot. and it got rid of the bad ones.
because of cushings, i have a jason, i have a dawniekins, i have a bernieboo, i have a cushie princess, i have a lissalovebug, i have my twinny back in my life, i've gotten closer with my mana, me and the btf reunited because he showed up in my hospital room the day before my brain surgery, me and my aunt sue got alot closer because she had to take me to all my appointments so we were always together, i got my mom and her sister to start talking again. this disease has given me alot. oh did i mention, I MET HANSON AND THEY GAVE ME A SIGNED GUITAR?! right. they kinda did that. that's how i met lissalovebug. and she is simply amazing. i met one of my best friends, through hanson, who i met from getting sick. crazy right? God is good.
Jason is like... a godsend. haha. play on words maybe? he is just fantastical and i love him oh so much. he's a cush, or an excush. and he gives me hope and he gives me smiles and i can talk to him about anything and everything. and he may be miles away from me, but he's always close to my heart.

Dawniekins just rocks my socks. She's a cushie like me, but she's been battling way longer than i have. she's the definition of strength and courage. seriously. look either of those words up in the dictionary and you'll find her picture. any time, day or night, i need her and she's there. she's also miles away but it's like she's not. we even got to go to california together for a cushings research thing. we had so much fun exploring together. we were both hurting when we got home, but it was nice to be able to be together. oh, did i mention she lives in illinois? right. met her through an online support group. and now i can't imagine my life without her.

Bernieboo i met in california as well, but we didn't get close until we found out we lived near each other. i know i can go to her with anything. i can't wait til we start hanging out. it's nice to have someone in my life who really gets it, and then to be able to spend time with someone like me? even better! oh, did i mention she's fabulous? yeah. and she's a nurse. she's kicking cushings ass and doing an amazing job at it.

my cushie princess, my stevie. my cushie sis. we hold each other up, we encourage each other and we get each other. i wish i could click my heels together and be near her, but that's a wish for another day. i'll get my ruby slippers and it'll happen. or maybe one day we'll be healthy enough and be able to afford going to the magic convention in vegas and we can all be together...

my lissalovebug... what can i say about her... what can't i say?our relationship blossomed out of my love for hanson. mmmbop baybee! she wrote me a song when she found out i no longer had a brain tumor. she makes time for me when no one else does. she loves me when i feel unloved. she holds my hand, she holds me up, she gives me strength, she makes me laugh, she rocks out with me at concerts,  she's  crazy, impulsive, sarcastic, witty one who tells dirty jokes and will do anything to make you smile. she's my hanson sisterwife!!

twinny and i got back together. and we just kinda resumed where we left off in high school. daddy said when she comes over it's like we're 15 because we're loud, we're laughing and we're just... well, we're us. she's like my rock. i know, i have a lot of rocks. but she is. she's a strong one that twinny. she's a mom. she's my best friend. she works full time. she's wonderwoman. she makes time for me. she never lets me feel forgotten about, even when i do. especially when i do. she always comes around juuuuuuuuuuust when i need her, or when i'm feeling at my worst, she just kind of knows and pops her head in. it's a twin thing i guess, she just always knows. and i've been dealing with so much of my own crap that i probably haven't been the best sister lately, but i know that she understands and still loves me. which is nice. it's nice to be cared about and loved.

and my mana. she's a nutjob like me. and she makes me feel not so crazy. and when my world is falling apart, she picks up the pieces. hell, she drove up from indiana, and didn't tell me that she was coming and showed up on my doorstep. talk about best surprise ever! i was a basketcase and she was the best medicine. she knows me so well, it's scary. we've been friends since the 5th grade. one of my longest and definitely my strongest friendships.

btf, who's my male counterpart. my soulmate. my backup. my wedding date. we have so much fun together. he's just superduper. we came together, fell apart and came back together again. i think our friendship is stronger than it's ever been. it's nice having a single friend. we can take off and do things that my married with children friends, can't. and there's nothing wrong with being married with children, but when you're the only single one in the group, it kinda gets lonely. especially when you have a chronic illness and are alone all the damn time... it's nice to have someone to be alone with. if that makes any sense. it makes sense to me, and that's what matters. anyway, he's there for me. and we go to the movies alot. and we talk alot. or we try to, and he tries to understand what's going on with me and offers advice when he can and just always offers an ear to listen, which is nice.

and then there's my aunt sue. who i love talking to. she came over tonight because i needed someone to talk to. i mean, i can talk to my mom. i always talk to my mom. but it's different talking to my aunt. i just kinda needed her, and no questions asked, she came over and listened and gave me her opinion and knew what i was talking about. i want the doctor to tell me what my best option is, i don't want to be given different ideas. what if i make the wrong choice? but like she said, i'll make the right decision, because i pretty much already know what i want to do, i just have to make the decision to do it, and decide when to do it and then that's that. and i can't put it off forever. she said, it's time to get your life back. and she's right. i'm sick of feeling like this so, we decided on novemeber. that seems like a good time for surgery, right? this way, i'll start 2014 a little healthier :)

everyone knows i have a terrific family. i've praised them in multiple blogs before. they're always there for me and i guess getting sick has brought us all closer together.

maybe i needed to cry like this and come to grips that i'm so scared. but am i scared of the surgery or scared of finally getting better? i'm not sure. but i know i don't want to have to have another surgery. but like jason said, he'll hold my hand through the whole thing, even if it's only heart-to-heart hand-holding. it still counts.

i have been really blessed throughout this whole thing. and maybe i've been forgetting about those blessings. maybe i needed to read people's bitchy posts on facebook about how terrible they think their lives are, when really, they have no idea how lucky they really are. people don't know how good they have it. i've faced death multiple times and overcame it. i've overcome so much. and i've lived to tell about it.

my physical therapist said to me today, i wish there was a way to show people their inner beauty. like plug them into something and show them, because nicole, you are so beautiful.
wow. just, wow. and she's just my physical therapist.
it's time to get off the pity train. but i don't know that i'm really a passenger on it, but maybe i am. i'm just having a hard time dealing with life. but it's going to get better. life has been pretty calm lately and i feel like either something really good is about to happen or something really bad is about to happen... and i'm going to go with really good. it has to be really good. my rainstorm needs a rainbow.

so... if i didn't have cushings... i wouldn't have some of the incredible blessings i've mentioned. and for that, i'm grateful to this godawful disease. so thank you cushings, for giving them to me. because i love them, and can't imagine my life without them. and hanson. that was a good day. that was a very, VERY good day ;)

Monday, July 8, 2013

i need a hero

i'm ready to say fuck it all.
i think i may have said that before. i don't really remember. i'm so sick of being treated like a guinea pig. i pretty much hate the world right now. i feel like no one is giving me answers, or they are giving me answers, but not the right ones. or they're still not sure themselves as to what to do so they have to do more consulting so i'm still left with nothing.
the doctor told me today that what i'm dealing with sucks and that it's not fair and that he hates what i'm going through. gee thanks doc. please, tell me something i don't know. he also went on about this new drug that just came on the market that he wants to maybe try on me that i've already heard about and the side effects are terrible. you're pretty much guaranteed to get diabetes. and then there's cardiomyopathy. and it's an injection twice a day. like i really want to inject myself again. i'm already doing that once a day for my blood thinners. he also said that the surgery is another option. well duh. i went in there knowing that. and it's a serious surgery. and i'll have to be on a replacement steroid for the rest of my life, and there would be some hormone replacement i'd have to be on, but there would be no more cushings. he said that i'm in the driver's seat and the decision is up to me. so i guess i have alot to think about, even though my mind is pretty much made up. so i guess it's just a matter of when...
i'd have to have the surgery out at jeff, which sucks because i'm gonna be all alone. because really, who's gonna drive to philly to come visit me? are you?
alone is something i've gotten used to. i shouldn't be, but i am.
and it brings tears to my eyes. i've been crying pretty much since i've been in his office.
he's going to present my case to the endocrine board and then contact a lady at NIH about me because i'm such a rare case.
some days, like today, i'm just ready to throw in the towel.
i just don't know how much fight i have left in me.
i've been fighting and i've been strong for so long... i just don't know.
i need a hero. preferably one with a cape. because let's face it, capes are freaking cool.