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

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 ;)

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.

the problem with being me

maybe i should change the title to, the problem with being me. i did change it. the original title was: the problem with living with a chronic illness

once again this disease is kicking my ass. and kicking it hard. cushings, the gift that keeps on giving. 

i'd like to return to sender please. 

my anxiety was having a good time running rampant the past two weeks because i decided to read my own mri report and it said new finding, where it mentioned a meningioma, measuring 0.5cm x 0.7cm. and it said where it was. so of course, i'm going crazy now. a new tumor? fanfreakingtastic. just what i needed. and it wasn't on my pituitary. so i have this tumor, that's not cushing's related and no i get to freak out until my neurosurgeon appt on the 20th. (my mri was the 4th) so la di da. let's hold it all in. tell a couple people. have some more headaches. get sick to my stomach. but then... my friend convinced me to call my neurologist. he didn't know he was convincing me to do that. i kind of spazzed out on him and he calmed me down and i made the call. i brought my mri report to the neurologists office and met with the p.a. she confirmed that it was a tumor, told me it had nothing to do with my headaches, upped my migraine meds, and told me that these types of tumors were benign and was glad that i was going to see my neurosurgeon. so, she really didn't make me feel that much better. 

i decided to post it on facebook. i felt like i needed to get it off of my chest and tell someone and i didn't know how else to do it, so i figured if i posted it on facebook, it would ease my mind a little bit. and this way, my cushie friends would know, my other friends would know, the people who follow my medical journey who i don't even really talk to would know, my family who i don't talk to would know... that's what i like about facebook. i can reach a large audience without really talking to people. maybe that's horrible to say, but seriously? you all feel the same way. that's why you post shit. so people can know your business, or at least what you want them to know. i post pictures into albums on fb so i have them cataloged. 

i had quite the outpouring of love and support. that was to be expected, and maybe that's what i kind of wanted, too. i needed to hear that. needed to know people cared. which is kind of sad and pathetic but whatever. 

and then there was my little vacation that i was going on. i was looking forward to getting away, forgetting about everything, going to the beach... well... i was trying to look forward to it anyway. it's just so hard to care about anything anymore. so hard to enjoy things. these anxiety attacks come out of nowhere. or i'll get tired or i just have a hard time caring about things. i just have a blahze blah attitude about everything. so anyway. i packed everything. we packed the car up and i was superexcited to go. i really was. and then i got tired. so mom said she'd drive the first part. so i got her to the parkway. and i fell asleep. i soooo wanted to do the driving. i love that drive. this is MY trip. MY wildwood. MY shore. MY life. MY beach. MY thing, right? so why does it have to start sucking now? why is it already being taken away from me? WHY?! i could blame it on the weather. it was crappy out when we left. and it's not like my ankle is healed yet. but the closer we got to the shore, the sunnier it got. we switched driving at the first rest stop we saw. i felt better driving. felt a little more in control, a little happier. finally. this party was getting started. we got to the hotel and checked in. it  was nice that the owners remembered me from all my stays there. we unloaded, unpacked, changed and got excited. we went to dinner, had a killer rainstorm, saw my cousins and went for ice cream. we went back to the hotel and surprisingly enough, i slept. the next morning we woke up early because we had planned on going to the flag day ceremony at sunset beach but that didn't happen because it was pouring. so of course, im not gonna feel the greatest. we went to my favorite breakfast spot, the doowop, drove around wildwood, and i almost fell asleep while driving. fantastic. so i, of course, needed to rest. i took a 2 or 3 hour nap when we got back to the hotel. i really wish coffee didn't make my heart race now. this whole resting shit really fucking blows. so i woke up and i don't remember what we did. oh yeah. we went to the beach. and then we went to the boardwalk and walked a mile. got some polish water ice, which is my favorite thing in the world, got my superman hoodie, and then the sky turned black. and i mean BLACK. we hightailed it back to the car and then BAM a monsoon hit. we drove back to the hotel and ran, i hopped, back to our room and then ordered takeout from my favorite pizza place, romeos. so the next dayyy... we met my uncle for brunch then went hunting for something for my dad and then hit up the beach. or mom took a nap and then we hit the beach. i don't remember. but i slept on the beach. which is really all i had wanted to do. that's where i wanted to do my napping. but this damn disease makes me so sensitive to the sun and the heat that i can't stand to be in it for long periods of time, it really sucks. we were out there for 2 hours though. the only reason i woke up was because of the horrible pain that i was feeling on my leg. guess who was getting sunburned? this girl. so in we went. we had wanted to make use of the pool so many times, but it was infested with children, and lots of children so that didn't work. we went to a fancy dinner and then went to cool scoops which is the cutest malt shop and then we hit up sunset beach for an hour or so to watch the sky turn a pretty pink and then we headed back and i ended up crashing. notice how many times i crashed or needed sleep. i was tired alot. i needed alot of sleep. i always need sleep. i'm always tired. it's like i can't have a freaking life. whenever mom asked me what i wanted to do, i'd say i don't care. i mean, there was plenty that i wanted to do, but i just couldn't find it in me to WANT to do it. like i said earlier in my blog, it's hard to care about things. i mean, i'm not a cold hearted bitch or anything. this disease has taken the best of me and i'm struggling to reclaim it. every day is a struggle. every.freaking.day. 

so, my vacation, was rough. it wasn't MY wildwood anymore. not MY shore. not MY beach. it just wasn't... the same. i was flooded with all of these memories of spending hours upon hours lying on the beach, laughing, sleeping, tanning, running through the waves. laying pool side, walking the boardwalk beginning to end countless times, doing the superman ride over and over again, the coasters, drinking in different rooms, making everyone my signature margaritas, or amaretto sours... just living. all those memories, a time before i knew that there was something wrong with me. a time where i could be carefree and just go. when i could run and be free. when i had no setbacks. the only thing i'd cry about was a douchey boyfriend! hell, i even had memories come flooding back of him while i was down there. that was fun, let me tell you. but it was a time when i wasn't sick like this. i mean, i had cushings but it feels like the surgery made everything so much worse. i lost my sight. i lost weight, then gained it. i got more tired. had trouble walking. started falling more. needed people to take care of me, drive me places, depression set in, anxiety got to be 10xs worse, panic attacks, i lost friends and family, memory loss became greater, more frequent and more severe headaches, i had to move upstairs so it was easier for me to get around- closer to the bathroom, no more stairs, easier to be near my parents should i need them, my life was basically not my own anymore. who was this girl in the mirror? i sure as hell didn't know who the fuck i was looking at. some days, most days, i still don't. 

i don't go to my drs alone. i can't take the drive by myself, resulting in my mom having to either leave work early or go in late or take the day off. 

i have such bad anxiety about going places or doing things, when i'm about to go out, i'll catch myself sinking and i'll say to my mom, i don't wanna go. and when i'm out, i'll catch myself counting down to when it's gonna be over. i hate that. I FREAKING HATE IT. i don't deserve that. my friends don't deserve that. well, they don't know about it, well, they will now. i mean, i kinda freak out before i go, and then once i get there i'm fine and realize it was all for nothing. unless i'm going to the movies with btf. then, i'm fine. i never have anxiety about that. or if i'm going somewhere with him, well, that's really all we do so... i've gotten pretty good at talking myself out of things. i can find something wrong with any activity that is in the real world. you give me one and i can find a reason not to be out there. cushings has turned me into a hermit. 

i really am having a hard time with living life. not as hard a time as i was having. things are starting to get better. but i wasn't myself. not like i really know who that is anymore. but people noticed. i didn't know that they noticed, but they did. i guess that's a good thing? i sure as hell noticed. i hated who i was becoming. i'm starting to like who i am. i think. i'm either liking who i am, or i'm accepting who i am and then we're gonna work on the whole self love thing. i mean, if i have all these people who love and accept me, why am i having such a hard time with it? is it because i'm not getting better? is it because i'm scared? is it because i don't trust anyone?

i have a beautiful inner circle. a group of friends whom i wouldn't trade for anyone in the world. last night lissa took me to a concert. and it was glorious. did i almost talk myself out of it? you betcha. but as i was walking out the door i said to my mom, kyle's gonna be there and maybe jimmy and that'll make things easier. i don't know why i said that because all i wanted was coley and lissa time. maybe it's because if something were to happen they'd know how to take care of me? i don't know. the three of them always make me feel comfortable in my own skin. lissa is one of the most amazing people i've ever had the pleasure of knowing and i'm so blessed to have her in my life. if i hadn't gotten sick, i never would've met her. it's all because of hanson. no, seriously. i met her because i met hanson at the radio station where she works and we formed an incredible bond and i wouldn't change it for the world. kyle? he's just fantastic. i started talking to him because he works at the sherman and wanted to tell me about rhps and we just haven't stopped talking. he's been a rock for me and it's been wonderful. i have so much faith and trust in him, sometimes i feel like i can talk to him about things that i can't talk to anyone else about. and jimmy? he works at the sherman, too. he helped me at the hanson concert when my legs swelled up and i had trouble walking. he let me bring in a water bottle. and he calls me his diamond, because a diamond doesn't know it's a diamond, but that doesn't mean it doesn't shine. jimmy wasn't there last night, but nonetheless i had an amazing time. like i said, once i get there, my anxiety wears off. i'm so blessed to have lissa around. we laughed. we danced. we talked. turns out we have a lot more in common than i realized. 

but like i said, my inner circle seems to put up with me. i don't know how they haven't gotten sick of me being sick all the time, or cancelling plans. i'm sick. and so many other people have left. so many other friendships have fallen to the wayside. but i've got these people who refuse to give up on me and that... that speaks volumes. even in my darkest hours. i have a twinny, a bestie, a wifey and a btf- they just won't go away. even when i feel like they've disappeared, they just kind of show up. or when i start to feel down or if i have to cancel, they're really understanding, especially btf right about now. he was even trying to rearrange his work schedule to come to my neurosurgeon appt with me so i'd have a hand to hold. who does that? 

i just wish i wasn't so sick. i'm tired of letting people down. i'm tired of letting myself down. i'm tired of being tired. tired of being sick. tired of not knowing if and when i'm going to be cured. tired of avoiding mirrors. oh, did i fail to mention that? yeah. i don't look at them anymore. i avoid them at all costs. i can't look at them. i don't know who's looking back at me. i don't like what i see. when i walk past the mirror in the hallway, i avert my eyes. i have 3 mirrors in my room and i don't look in any of them. i'll check myself if i'm going out but, that's about it, and it's rare so... there's really no point in seeing what i look like. the only time i look at my face anymore is once a day for my daily cushings picture that i upload to the cushings symptoms tracker on my phone. that really sounds like me, doesn't it?  

some days are harder than others. i remember not too long after my radiation, when i had started my cushings meds, i was starting to have more good days than bad. when i could push myself and be alright, now i'm just wondering when those days are going to start happening. is it harder because of the deep depression that i had sunken into? is that why it's harder for me to claw my way back to the top? i just don't have an answer. my psychiatrist, therapist and my mom have all said that this is the most stable they've seen me in a long time. i guess that's a good thing. i mean, i guess i agree with them. i can't disagree with them. most days i feel alright, i just feel... blah. or i'll have alot of energy and nothing to do or nowhere to go with it. but they're mostly blah days. 

are you seeing the problems with being me yet? no? the list can go on. try cushings on for size. tell me how you'd enjoy it. not knowing if you're gonna live to see another day. having to take catnaps. feeling low energy. feeling like you're letting everyone down. having your mind race constantly. moving slower. not recognizing the person staring back at you in the mirror, or the thoughts that cross your mind, not caring about anything anymore. please tell me how much you like it. 

 being me kind of sucks. if i were you, i wouldn't want to be me. would you?

freaking out

so. june 20th i go back to the neurosurgeon for my 6 month check-up, to go over my latest mri and for him to say, i see nothing. which means it'll be almost two whole years that this tumor has been gone. the tumor that pretty much destroyed my life. the tumor that took away my sight, my job, my body, my ability to do alot of things, my tumor that gave me cushings. my tumor that turned my sunshineyness into dark skies, that took away my tiara, that took away my friendships, that turned me into a hermit, that made me afraid of so many things...

and i am afraid. i'm afraid to go out places. i'm afraid to look in the mirror. i'm afraid to trust people. i'm afraid to look at people, to talk to people, to go to the doctors, to walk dogs, to spend time with people, to just be.

and i'm freaking out about june 20th. i keep getting these headaches. and they're headaches that linger for days and days. i'll be taking my painkillers every 4 hours. it's like my body knows when they're wearing off because the headache will come right back. my head hurts, my teeth hurt, my eyes hurt- yes, both of them. laying down doesn't help. the dark doesn't help. nothing seems to help, and that scares me. what if it grew back? what if it's growing back? it shouldn't be. i had TWO surgeries AND radiation. i should be done with this shit. i shouldn't have cushings anymore. i should be cured. i should be losing weight. i shouldn't be falling. i shouldn't be crying all the time. i shouldn't be anxious or afraid. i should be able to sleep like a normal person. i shouldn't be tired all the time. i should be a functioning member of society.

there's that damn anxiety again. it keeps me up at night. i fell asleep somewhere between 4-5 this morning. nice, right? i took my melatonin, had my reiki music playing and nada. i even took an ativan, but i took that at like 2, which could be why i feel so crappy today. i did have a burst of energy around 4 this afternoon so i took a shower, but that's gone now, so maybe i'll sleep tonight. my dr wants me to go for a sleep study, but we know why i can't fall asleep. it's called cushings. do your research. i don't want to be on anymore drugs. i don't want a sleeping pill. i don't. and i know that's what he'll rx me. and i can't do it. they're addictive. he had rx me ambien before and i slept for an hour and a half and then i was up with all sorts of energy.

i have full blown cushings. my salivarys came back nice and high, i know, i read the reports. i'm glad my endo sends them to me so i can see what's going on. he's good like that.

i think i'm also freaking out because i have to wait so long to see the guy in july. july is a long ways away. or, maybe it's not. it's a little over a month away. i just don't know what he's gonna suggest. surgery? more meds? more tests? aye aye aye. this disease is quite sucktastic. quite quite QUITE sucktastic and i just don't know anymore.

and what really sucks? i had an awesome day yesterday. i got my haircut, i felt pretty, i went to target, went to cvs and even went for froyo with my mom and today? nothin. i just want to curl up into a ball and take a sledgehammer to my head.

what.the.frig. so over this.

oh. annnnd i've been doing research on my disease. and other diseases, like nelson's syndrome, which i could get if i have a bla. i never used to do research because i didn't wanna know so i wouldn't freak out. ignorance is bliss, ya know? so much for that theory.

what to do, what to do... *sigh*

and i'm worried that one of my friends might have this. i want her to get tested. her dr only did bloodwork but... she needs more tests, she really does. the bloodwork almost always comes back normal. she needs a ufc. but... she probably won't listen to me. idk. i guess i diagnose everyone.

and i'm worried about my dawniekins. she's not doing so well. i just wish i could take this away from her and make her a taylor ham, egg and cheese sammich, serve her some starbucks cawfee and fix her.
:(

i wanna fix us all.

but since i can't, i'll just keep freaking out. because i don't know how NOT to.

hmm...

i feel like i should blog today, but i really don't know what to say, but i'm good at randomness and not shutting up so... i'm sure i can find something :)

i woke up in a really bad mood. probably because of the dream i had. it wasn't a good one. it was about a friend abusing a kid. and probably bc the kid's been abused before and i worry about him. so i woke up ready to punch someone in the face. but i'm having a really good hair day. i have beach curls because i didn't blow it out, i just let it dry and i had pt today and that went well. the swelling went down in my ankle a little. it doesn't hurt so much to walk on it, so that's a plus. and i had some chocolate and i talked to my twinny so things are starting to look up.

i spent the weekend with the wifey, which always makes me feel better. i didn't get to spend as much time as i would have liked to there because i wasn't feeling well, but she understood. she's always so understanding. her and her hubs are the best. we had italian food, i got to be in a parade with her, we went to 3 bbqs, we had Sunday dinner with her folks, aside from me getting cushingy, it was great and much needed. we drank. we giggled ALOT... THE BEST! and? she's taking me and my mom to meet my specialist in july. i'm telling you. she's perfect. and a few days after that we're going to medieval times. holla! and my best guy is going to try and come with us. what a crazy weekend that will be! the four of us? oh lawdy lawdy!

friday i spent the DAY AND NIGHT with my best guy. we saw epic. we went back to my house and hung out. he met my sisters puppy. i was surprised with a gift from the popcorn factory from my aunt and uncle. then we went to dinner and then we went and saw hangover 3- which wasn't that great. and then we sat in my car for an hour and a half and talked. and i cried a little bit because i talked about some really emotional things that i'd been bottling up. but it was a GREAT day.

thursday my baby brother graduated college! i'm so proud of him. he did so well. he's really proud of himself, as he should be! we took a really nice family picture, too. not in his cap and gown of course, because the dope took it off and returned it before we got the chance! *sigh* boys. eh well. what can ya do?

so... that was my weekend. and i've been feeling craptastic. OH! i had my food stamps appeal hearing. what's that you ask? well, they decreased my fs because i'm on disability and they cut my medicaid. so, i wanted to appeal it bc i didn't think that was right. i knew nothing was really going to change, but i wanted my voice heard. someone needs to speak for the disabled, bc to get fs now, you have to be knocked up or have kids. if you're sick or old it doesn't matter and that's not right. old people need help. sick people need help. i need help. so, i opened my mouth. when they did my calculations, i'm actually due more than i'm getting, but my caseworker sucks and when i submitted the paperwork, she never entered it into the computer! THIS IS WHY I SPEAK UP! ugh. ANYWAYYYY... turns out, i'm eligible for the state to pay for my medicare deductible, too! soo... i'm being sent paperwork to fill out so they can do that, AND i'll get back pay because AGAIN my caseworker didn't give me the forms to fill out when i had asked her about it MONTHS ago! so, i could either accept less fs and take the medicare payout or take a bit more fs... i think we know which i'm taking! i'd rather have my healthcare paid for and i'll just stick with what i'm getting. at least my voice was heard. that's what i really wanted. talk about good news!
AND THENNNNN...
my mom bugged me to check my email to see if my dr sent me anything. i didn't want to. so she checked hers bc she emailed him about how terrible i've been feeling and how much worse i'd been getting. bc i've been getting worse, i just haven't been talking about it. i've been sleeping more, my muscles are weaker. i've been falling. my headaches are coming back with a vengeance. i'm having crying spells. fits of rage. a rounder face. my clothes aren't fitting right. i'm getting dizzy while laying down. dizzy standing up. not sleeping at night. hot flashes. freezing. stomach pains. you name it, i got it. it's like i just had surgery. so, i checked my email. and sure enough, my salivary tests came back high! i knew they would. i don't know how high they came back, but they were high enough to bother him to say, you definitely have cushings and i want you back on your medication. THANK FREAKING GOD! i can't even begin to tell you how happy i am to 1. be rediagnosed and 2. be back on my meds! i know they're not going to work right away, but at least i'm going to see SOME relief at some point! cheese and rice THERE IS SUNSHINE TO MY DARK SKIES!!! just had to be patient. and patient i have been. bitchy, but patient :)
i am kinda bummed because i couldn't even go to therapy because i felt so awful. i'm really over feeling so terrible. i'd like to see my therapist again. i really would. she's so awesome, she said that she'd see me spontaneously. all i have to do is text her on a day i'm feeling good and she'll work with me. how awesome is she?

i'm going to a concert tomorrow with bina. my lovey got us tickets to summer smash so we're gonna see carly rae jepsen, 3OH!3, emblem 3 and cher lloyd. do i know these people? nope. well, i know who the first two are. kind of. but it should be fun. i love concerts. and i love my bina. and i love my girl who got me these tickets. it's gonna cheer me up. and i think i can convince bina to go for fume for dinna. that'll be nice.

hmm... what else... this blog is probably boring you. but whatever

i'm glad adam levine doesn't really hate america. and i'm glad judith hill got voted off the voice. i'm sorry. but she sang back up for michael jackson. she has a career. leave. give it to someone else!

speaking of adam levine... maroon 5 and kelly clarkson in september! woot woot!

apparently i'm pretty awesome. some girl, well, she's my friend now, found me on twitter and she's from the UK and she's struggling with possibly having cushings and getting a diagnosis. we've become good buddies and i'm helping her fight to stay above water and to keep going. it's a bitch this disease, it really is. but i've made some incredible friends along the way and i wouldn't trade them for the world. i have my dawniekins who i can go to at any time of day with anything and she's there for me no matter what. she sometimes knows things before twinny does. but twinny always finds out. i usually text them at the same time, lol. but she's super amazing and i'm so grateful that i got flown to san fran last year and got to meet her. and then there's bernadette, whom i also met in san fran, who apparently grew up 20 minutes away from me. granted, she's older than me and went to my RIVAL school district, freaking bear, but we've become really close, too and i love it. she gives me good cushie advice and she's living in florida now, but she's going to be moving back up here and i'm gonna have a cushiesis HERE! how awesome is that?! and then there's my stevie. my lovely, lovely stevie. whom i adore so so much and i just want to wrap my arms around and hug the crap outta her! she's so cute and sweet and don't piss her off because she'll stomp on you. we've had some of the same symptoms. so we can share the journey. i think she's cured though, she just has the recurrence of symptoms, because it takes 7 years for a FULL on cure. lovely right? and then there's my instagram crew- Rachel and Jerry and Alicia. They're awesome and we're all supporting each other as much as we can. It's a good time. This disease is evil but we're making it together. We hold each other up and fight. we get pissed off together, get mad at each others doctors, suggest things to ask the doctors, give each other advice, it's good. i like having a support system. i mean, my friends here are great, but they don't get it. and part of me is glad that they don't because i wouldn't wish this on anyone.

haha. sisterwives for hanson. i love my lissa. she's crazy.

they're closing down my elementary school. that's depressing. the school board says they don't have the money to keep it open. i loved that school. the district is goin to crap though. at least that's what i'm hearing. it makes me sad. but, what can ya do? i heard that one guy stood up to the other board members, a really stand up guy, too. he's always been awesome so, that made me happy.

i think now i'm just talking just to talk. so... i'll end with this.

this is my beautiful family at my brother's graduation. and yeah, that's my awesome boot for my sprained ankle. i tried out the aircast today, though :)

be blessed my readers!

the girl in the mirror

who is this girl i see, staring straight back at me?

do you know? because lord knows, i don't have a fucking clue anymore.

i was originally going to just type in my journal entry from last night into this blog... but... i don't know that i can get THAT personal with y'all but... who knows what's about to flow out of me...

i don't know who i am anymore. i don't recognize myself. the girl i see... isn't the fresh-faced, pretty, happy-go-lucky, sunshiney, positivity princess that i once was. nono, the girl that I see is a monster. she had sad eyes. she has a hard time smiling, a hard time laughing. she's dark. she's filled with negative thoughts. she's ugly. she wants to hide away. she wants to runaway. she doesn't trust anyone. she feels disgusting. she hates alot of things. she looks in mirrors and at times just wants to put her fist through them, or cover them with scarves. taking selfies? yeah. that rarely happens.

i was looking at pictures of myself from 2012, when i was on my Cushings medication and i feel like... then i was prettier. then i didn't look like this. then i was happier. then i didn't feel like such a waste. maybe it's because i'm going on two fucking years since my radiation and NOTHING has changed. ok, the tumor is gone, but there are still cells secreting cortisol and i'm NOT getting better. if anything i'm starting to go back downhill. my face is rounding up again. my stria is coming back. my weight is starting to go up. my depression got so bad i had to start medication. my joints are weakening to the point where this is the SECOND time i've fucked up this ankle. and this time i think it's actually worse because it's going on two weeks and i STILL can't walk on it. i mean, i'm trying to walk on it but it hurts like a bitch. i feel so alone, so completely alone and you can say i'm not but it doesn't really matter does it? because my feelings are my feelings. so validate them. or don't whatever. i don't care.

it's gotten to the point where, i don't necessarily want to go out in public because i don't want people to see me. i don't want people to have to look at me. because that's how gross i feel. since when did i become my 10 year old self?
i'm throwing around the idea of NOT going to one of my dearest friends wedding because i don't want to ruin her wedding photos. i don't want people to look at me and be disgusted.
who is this person talking? who am i? when did i become this? when did this become me? where did all of this come from?!?!?!?!?

i fucking hate you cushings. i hate hate HATE YOU.

or me. maybe i hate me.

i hate what it's done to me, what it's doing to me. what every day does to me. every day that there's no answer. every day that there's no cure. every day is another day that i'm stuck in limbo that i'm stuck that i'm in this body that i'm this person that i don't know... that i'm this person who just... just sucks.

who is this girl in the mirror? when did i become so dreadful? this disease seems to get worse and worse every day. i'm learning more about it and hating it more every day.

there was a time when i chose not to know anything about it. i wanted to be surprised by what was happening to me. i thought, if i didn't know what was coming, i couldn't be afraid of it and i couldn't know more than my doctors. well, guess what. i'm freaking educated now and i'm starting to think i know more than my doctors because no one has answers. i'm glad i'm going to see a different specialist in july. it sucks that i have to wait so long, but apparently he's worked with a lot of cushings patients. he better tell me 1.that he's giving me medication or 2. that i need surgery. something is going to fix me. or i'm going to fix my fucking self. i will call that dr out in california that everyone's always talking about and make him see me. or i'll find my way to the mayo clinic. i'm not going to stop because i want to look in the mirror and like who i see. i want to recognize that person.

there was a time where i thought i was beautiful. where i had a light in my eyes. where i'd take a bajillion pictures of myself. i did take a few pictures of myself the other night because i couldn't sleep. i looked at them yesterday and almost got sick to my stomach. since when did i become so vain? i miss the girl i was when i was in california. i want to be the girl who'd go to karaoke and sing the song my friends wanted me to sing. i sang lion king songs for crying out loud. hell, i made huey sing a sonny and cher song with me because i was mad at him so i signed him up for it behind his back to make ME feel better. and it worked. i miss ME. where the hell did i go?

i hate feeling like this. the self-loathing. i just had frozen yogurt and now i feel like i just gained 500lbs.  or that my face just ballooned. and the sad thing? i sometimes eat breakfast and i eat dinner. that's it. that's what i eat.why? because with cushings we have NO appetite! we are fat anorexics. at least when i didn't have a fucked up ankle i could work out and at least not feel so disgusting. but no. cushings makes my balance suck so down i went and now i can barely walk. so i sit with my legs up in the air, and i just sounded like a whore, watching tv. today i at least made cushings awareness bracelets.

i never thought i'd feel this way again. never ever.

i only ever had one boyfriend make me feel like this. ugly that is. i mean, i dated some real assholes, but they never made me feel unpretty. they made me feel worthless, and not good enough, but always beautiful. i know that doesn't make any sense, but in my head it does. i was always hott and just torn down. but there were also times where i felt above them, like i was dating down. and in fact, i dated beneath me alot. i guess that's just what i was trained to think i deserved. when you're talked down to for as long as i was, you just start accepting less. and now that i'm not settling... well... i won't settle for anything less than being someone's sun and moon. and i know what i deserve. which is why i walked away from the most recent scum of the earth. he was a looneytune and beneath me. do i sound like a bitch? well, too bad. it's true. i deserve someone who's gonna be there and be true and HONEST and alot of things, alot of things that he wasn't. so, why settle? NO ONE should settle. i see too many people settle and get treated like shit and then i think, hmm... i bet that's what people were thinking when they saw me with x,y and z...

and yet here i am talking about hating myself. but i don't think i really hate myself. i hate what's going on within myself and what's been happening to me. and what's not happening to me. i'd like answers. i'd really like answers...

i know i'm in there somewhere. i'm just lost.

can anybody find me? please? because i don't know where i went. and i miss me. i miss me alot.

i think i looked better with the bolts in my head...