well,well,well...

and away we go!

i haven't blogged in quite some time. mostly because i've been feeling like crap. or because i haven't really wanted to. or then i did want to but my computer was fucking up so i had to send it away to the geek squad so i was computer-less for a few wethis eks. i've had so many thoughts running through my head and so many pains running through my body.  as i'm sitting here typing this, i'm wondering when this day is going to end, and it's only 2pm!

so let's see... what have i been up to... well, this year has seemed to have been the year of music. i've gone to a ton of concerts. in august i went to the dirt road diaries tour- headliner luke bryan, openers florida georgia line and thompson square. that was fun. but, as the concert progressed i found myself wondering when it was going to be over. it's not that it wasn't a good time, it just i don't know. i have a hard time enjoying things. and the next day i had to spend the day in bed because i was completely drained and in pain.
then there was kelly clarkson and maroon 5. the concert that i had been looking forward to all year. or, since i had bought the tickets. that was a blast and a half. i didn't find myself questioning when it was going to be over, but again, i ended up in bed all day because of the pain i was in.

i can't have a day of enjoyment without a day with pain following. i'm exhausted, sore, achey, brain foggy, annoyed... this disease fucking sucks.

what else... oh. world suicide prevention day came and went. and since i'm a suicide survivor, especially more recently, i decided to get a tattoo on my left wrist that says "you cannot be replaced". my left hand is the hand that i take my pills with and if i was going to kill myself i would overdose on medication, so it's kind of symbolic. it's also a reminder that no, i cannot be replaced and that this world needs me. this year, twloha, to write love on her arms, their theme for wspd was you cannot be replaced and that's what inspired the tattoo. i bought the t-shirt and the bracelet and the cards. i started sinking again though, having those thoughts that i was worthless and that the world would be better off without me. that i didn't matter. that i was just here, taking up space. so, i decided not to wait until october to get this tattoo, i decided i needed it now. i needed to inflict some sort of pain upon myself, or do something for myself to make me feel better. and it did make me feel a little better. A LITTLE. my tattoo artist and i talked about why i was getting the tattoo i got and he opened up to me a little bit and suggested some music for me to listen to. i really liked it once i listened to it. my mom saw me sinking. so we did some retail therapy, she got me out of the house, since i had become a hermit again. my friends had stopped coming around again and i started to feel lonlier.i know everyone has their own lives, but it takes 2 seconds to send a text message. and i'm not wrong in feeling this way. i'm entitled to my feelings and anyone who thinks otherwise can suck my nonexistant dick.

the lonlieness has started to set in again. the friend who i had been spending a lot of time with has fallen off the face of planet again, which is common for him. which i don't know how he can call me his best friend when i don't feel the same way. i feel like i'm just here when it's convenient for him and he treats me like garbage. and i'm sick of it. i go above and beyond and i'm done. i just don't see a point in me being there for people when they can be there for me one minute and then disappear the next and only be around when they wanna be. actions speak louder than words and i'm sick of being hurt. i don't need to have a lot of friends. hell, i DON"T have a lot of friends. i may have a shit ton of friends on my friends list on fb, but how many of them are REALLY my friends. let's be honest. how many of them do i really interact with. how many of them could i depend on if i really needed to? not that many. and that's fine. that's how it is.it just seems like the friendcount is dwindling. it seems like people seem to think i'm better and that i don't need anyone and that's not the case at all. i DO need people and I"M NOT better. maybe it's because i don't complain. but what's the point in complaining? it doesn't do anyone any good. it just makes everything worse, at least that's how i see it. i mean, i have a few people that if i need to vent, i'll vent but carrying on and on and on about the same damn thing? yeah. no one wants to hear it. but what do i do? do i say? hey. i'm lonely. it'd be nice if someone came by the house and watched tv with me? or hey. i need to get out of the house. anyone wanna go to lunch or dinner? i mean, i guess i could do that. but i think i want to be reached out to. i don't want to do the reaching. and maybe that's selfish or maybe that's not the right thing, but that's how i feel. because i feel like no one cares anymore. and when i do reach out, i feel like i'm being ignored. or that i'm a problem. and it's not fair. this disease has taken so much from me as it is. it's like people don't want to be around me because i can't do what they can. i can't go dancing. i don't drink. i can't go hiking. i don't do much. and it's like people don't want to be around me. that's how i feel. last summer i was going out all the time, spending time with friends- friends who have disappeared completely now- because i was healthier and this summer my health has taken a turn for the worst. this year actually.

i had to deal with feeling like i was beneath people this past weekend. i always look forward to my monthly weekends away. but this past weekend, it was different. i felt alone. i felt like i was beneath the people i was surrounded by. not all of them. just a few. and it was awful. i ended up leaving the party, going up to my room and crying my eyes out for a good half an hour. we went to the ren faire and i felt alone there, too. something i've been looking forward to all year and i just felt alone. and that never happens, but it did. maybe i wasn't feeling well. or maybe it was the emotions from the night before. or maybe it was because there was so many of us. or maybe it was because we didn't stop and sit still and i was in so much pain. i don't know. but i did ok. i think we walked at least two miles that day. and sunday i didn't sleep all day. i mean, when i got home i slept. i slept a alot. and monday i was in a lot of pain and slept alot. like i said, one day of activity takes a whole lot out of me. but i was really sad when i left. it was kind of like i never even went away. because the feeling of lonelieness never really left. i had a good time, don't get me wrong. there was a lot of smiling and laughter but... it just wasn't... it just wasn't.

and let's bring it to tuesday. tuesday we took a trip to hershey to meet with the surgeon who plans on changing my life. the two pituitary (brain) surgeries i had, plus the radiation didn't work to cure my cushings disease. i'm still producing an overabundance of cortisol. so, what do we do? i was put on ketocanazole which is used to lower cortisol, which is working. BUT it's not a long term thing. it will kill my liver and the oral medication is going to be taken off of the market soon. so, what other option do we have? more surgery. your adrenal glands are responsible for pumping out cortisol, adrenaline, hormones, etc. so, what do we have to do? remove the adrenal glands. both of them. can you live without them? nope. so, i have to be put on replacement steroids for the rest of my life. and this sounds horrible, but not having them would make it so much easier to end my life if i get that low again. but i think it would take more than just missing my steroid dosage. anyway. i'll be put on replacement steroids and i'll be at risk of adrenal crisis/ adrenal insufficiency. i have to really watch weaning myself down to the right steroid dosage. if i get sick, i'll have to take extra steroids. i'll have to teach people how to inject me should i black out and go into AI and not be able to swallow the pills. yesterday i learned a lot about the surgery. he was really knowledgeable. he knew a lot about cushings, he's done a lot of BLA's. he studied under the guy who created the filter that's in my chest. he knows the surgeon who did my friends surgeries. his resident studied under my neurosurgeon. he really made me feel at ease and he liked that i knew my shit. i knew that i was going to have to have a good trip meeting him before i even went. i knew from making the appointment that he was going to be the right guy. everything's sweeter in hershey! i scheduled my surgery for december 6th. oh em gee. i don't know man. kinda crazy. i'm gonna have a whole new operating system. i'm gonna be going into 2014 as a brand new person. i'm really looking forward to not looking like this hideous creature that i've become...

hideous creature. are you hearing me right now? who am i? what happened to me? when did this become who i am? when did i become so dark? i really hate this disease. i really do. i can't wait to be rid of it. maybe then i'll feel sort of normal. maybe then i won't be so sad and angry. maybe then i won't feel so ugly. maybe then i won't feel so lonely. no, i'll probably still  feel lonely because honestly, if you're not around during my struggle, you sure as hell aren't going to be around when i'm better. #truth.

i'm so sick of feeling like this. i really am. i don't even know who i am anymore. i don't recognize who i see in the mirror. hell, i avoid the mirror because i don't like what i see looking back at me. she's gross. and you know what's nice? most people with this disease feel the exact same way that i do. that's what's nice about my support groups. they get it. they get me. they're going through it, or have gone through it. our journeys are different and yet they're the same. i just wish my cushie friends were closer so we could all be sick together, so it wouldn't feel so lonely. so we could all lay on the couch in pain together. we could cry together. watch tv together. take our meds together. lay on heating pads together. use ice packs together. just be cushified together. because THEY GET IT.

am i afraid of this surgery? yeah. it's a big deal. they're gonna be moving around all of my insides. it's a major surgery. i'm gonna be getting rid of the disease that's been killing me for years and years and years, recovery is gonna be  a bitch. it's gonna be months before i start to feel better and then years until i'm TRULY free of the beast. but will it be worth it? hells yes. will i be riding rollercoasters? going to the beach? going places on my own? yes yes and YES. it's going to be a wonderful feeling. and then, i can forget about everyone else and leave everyone in my dust and throw up my middle fingers and say DEUCES baby! why? because isn't that what most of y'all have done to me? so why can't i do it back? it's not like i'm doing it to the people who've actually been there for me. they're gonna be riding the glory train with me.

i have big plans for when i get better. i'm gonna go see dawn. maybe i'll see nicole. maybe i'll finally get to go on that vacation with christine and pete. who knows. but i'm gonna get better. and you all can fuck yourselves. :)

and this is why i hate you

i think we've all heard that what we don't like about others is what we don't like about ourselves, right? well... let's discuss.

so... day after day i sit here, and i can't do much. some days i can't get out of bed. i've actually had weeks where i've been bedridden. or couchridden, however you want to put it. i'm kind of stuck in this body that is waging a war on itself. i've got a mind that doesn't stop chattering. i have words that sometimes won't form sentences. i have two college degrees that i can't do anything with because i'm too sick to work. i have friends who have fallen off the face of the planet because they can't deal with my sickness, and yet they made me feel like i was the burden, that i was the worthless one. i went from changing the world, to being stuck unable to do much. i get these godawful headaches, like the one i'm experiencing now where my eye hurts, my head hurts, and my teeth hurt. i sit here and i just want to go hiking or dancing or shopping or go work and change someones life. or i want to exercise like a psychopath- like i used to. or i want to take off and go to the beach or go to dorney park or read a book without my head spinning. but i can't.

and then there's you. you with your healthy body. you're ability to move, your ability to work. your ability to change lives. and yet... you don't. you would rather sit around and do NOTHING. NOTHING with your life. i see such wasted potential and it drives me BONKERS!! you could be doing so much more with your life and you choose not to. you'd rather be lazy, playing on your phone or your tablet or your computer while there's a whole world going on around you that you want no part of. when did social media take over? when did technology become more important than human interaction? when? it's disgusting! what i wouldn't give to be you! let's trade bodies, please. i would GLADLY take on your body, male or female and go run wild. i will go hiking for you. i will go enjoy God's earth. i will go change someone's life. i will go on vacation. i will go have fun. i will go be THANKFUL for my health and stop complaining about stupid, petty bullshit that i have control over and that i can change! you have the ability to make great strides and positive changes in your life and yet YOU DO NOTHING!!! why is that? WHY?! do you have a reason?  well... DO YOU?!

i sit around, fighting for my life, every day. i'm thankful that i can put a freaking SMILE on my face. i'm thankful on the days that i can take a SHOWER and it not hurt my body. because yes, some days, showering hurts. it freaking hurts. the drops of water sting, the steam gives me a headache. i'm grateful to have grab bars in my shower because i get dizzy and need to hold onto them while i wash up. maybe that's tmi for you, but whatever. no one said you had to read this.

i try not to complain. i try to stay positive. i try to help people, still, even in my condition. i'm thankful for my cushings support groups. we uplift each other, we give each other advice. we get it. i still try and be around for my friends, even though they don't really come to me with their problems because i think they don't think they can. which is fine. it does make me feel kind of useless, though. like i'm less of a person. yes, i'm going through my own crap, but if you need a shoulder to cry on, i have two of them. and i'm a good hugger. more than likely i'll cry with you. i'm a bag of emotions. part of my disease, or part of who i am, it all depends on the day i suppose.

but seriously. i see so much potential going to waste and it breaks my heart. why waste your life? you have the ability to do so much more than you're doing. i can't do it for you. i'd love to, trust me. i'd give anything to be healthy right now. but i'm not.

so do me a favor. live up to your potential for me. please. make some positive changes. change someones life. CHANGE YOUR LIFE.

make me stop hating you.

is there really hope for the hopeless?

seriously though... is there?

because i'm starting to lose it. i really am. or i was. i don't know anymore.

this disease is really starting to wear me down. and hard. and it just comes out of nowhere, well, maybe not nowhere.

i had been waiting and waiting on a phone call from my doctor to tell me what the endocrine board had said at their meeting about my next round of treatment. and i was waiting and waiting and waiting. and he always seemed to call me when i was in the shower, and he was never there when i called him back... typical, right?

but let's go back a little bit. i had been feeling alot worse. the fatigue was setting in alot worse. and i don't know if i was becoming depressed again or if it was just the disease having control over me again. i'm not really sure. all i know is that everything hurt, i was nauseous, and all i could do was sleep. and i was getting bad headaches again. i had to cancel physical therapy all last week because i couldn't get there, and i could barely move to do anything. so yay for me for feeling like garbage.

so the doctor finally calls, wakes me up actually. i had refused to take a shower until i had heard from him. he talks to me about this medication that i said no to, because i'm not a guinea pig and he wasn't really keen on me going on it because there's not much information out there about it and he doesn't like the side effects, neither does my current endo, so meds are a no go. and i can't stay on the current medication that i'm on long term because it will destroy my liver, and they're not really doing much for me anyway. so, surgery is my best option. and then he tells me, well, it's going to lower your cortisol but i can't guarantee that you're going to feel better. you might actually feel worse. so wait, what?!! you're going to take out my adrenal glands, have me chemically dependent on a steroid for the rest of my life and then tell me that i may not feel better, ever?! are you fucking kidding me? really giving me hope there doc. so please, tell me, what exactly is the point in all of this? because i'm not seeing one...

i really thought that he was gonna be like, my superman or whatever and honestly, he's not telling me anything new. i already knew i was going to need surgery. but telling me i may not get better? everyone else that i've spoken to has said that i WOULD feel better. everyone else who's had the surgery HAS felt better, so wtf?! but idk... now i'm not so sure. and then my friend ended up back in the hospital after her surgery. they nicked an artery, she lost a lot of blood, they killed part of her kidney, which is now dying off. she's been so incredibly sick that she's been bedridden, unable to hold food down, she ended up BACK in the hospital... i've been worried sick about her, scared and... i don't even know what. i honestly was scared that she wasn't going to make it. i was on my knees praying to every god i could think of to pull her through this. it made me not want to go through this myself. it's so scary. and life changing. and life threatening.

i've cheated death 4 times. do i really want to chance it again?

is this really going to make me feel better?

is this really going to be it?

am i making the right decision?

am i choosing the right surgeon?

am i going to the right hospital?

we all saw what choosing the wrong surgeon could do does to a person. hello no sight. i mean, granted, i trusted my doctors when they told me that he was great and knew what he was doing and when they told me i only had 3 days to make a decision and that my life was in the balance and that i didn't have time to get a second opinion...

my cousin told me i inspired him the other day. that kinda wore on me. i almost broke into tears in the middle of panera. i inpsire him? how do i do that? i don't see it. i mean, he told me how strong i am, how i don't complain, how i just keep fighting and i keep going and i just thought to myself... you have no idea how much i want to give up and stop going. i just want to stop. i just want to quit. i just want to be done and never have to deal with any of this ever again. i want to scream THIS ISN'T FAIR! WHY ME?! WHY?! WHERE IS MY RAINBOW! WHEN IS THIS STORM GOING TO BE OVER?! that's what i wanted to say. but instead i just bit the inside of my cheek so i didn't cry and smiled that smile that i use to hide everything so no one knows what's really going on. i don't see it, the whole me being inspirational thing. i told him that i was almost hospitalized back in march because i was so close to killing myself, but the whole reason that i didn't was because i didn't want to ruin my brothers graduation and he said there you go, doing it again. putting others before yourself even in your darkest hour. and i never thought about it that way. but that's just who i am. and idk. talking about all of this is really hard. really hard. i mean, i thought about it again the other day. how much easier it would be if i just wasn't here to have to deal with any of this crap. because then no one would have to worry about me, then i wouldn't have all of this stress. i think people think i have this incredibly easy life because i'm home all the time and don't do anything. but you have no idea what i go through on a daily basis, how difficult it is just to live. it's so hard. sometimes breathing gets hard. it gets hard just to get out of bed. my desire to even live gets hard. smiling gets hard. the want to want to do things, the want to enjoy things... it's hard. life is hard. living is hard. you just don't get it. and quite frankly, you never will. hopelessness. it's not an easy thing. and i've been feeling myself get dragged down to that dark place again...

it's just so hard. i miss so much. i miss being able to work. i miss amusement parks. i miss hiking. i miss the beach. i miss dancing. and my doctor telling me he can't tell me that i'm going to get better... makes me think i may not have these things again. i want these things now. it's been three fucking years. three years today actually... no wonder i'm miserable.

i'm scared to death. and have been feeling dragged down until my girl started to be on the mend. until i had two little kids tell me how much i meant to them and how much they were going to miss me when they went away on vacation. until i signed up for a kindness club thingy for cushies. until i talked to sonia and cried. until i lit some candles and prayed and prayed and prayed. until my sisters dog licked the tears off of my face. until i started to see some sunshine. i don't know that i see sunshine for myself, but seeing sunshine for my friend really helped me. and i've had 2/3 good days so far this week so i'm embracing them. i'm not doing much of anything, but i'm awake so... that's a plus. i am ready for a nap right now and my head is starting to throb but hey, that comes with the territory.

so is there hope for there hopeless? maybe... just maybe...

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?