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Wednesday, January 29, 2014

chirp, chirp

all i hear are motherfreakin crickets.

chirp, chirp. chirp, chirp.

don't know where everyone ran off to. everyone wanted to know my business when i was on top of the world, my goodness. let's be nicole's best friend. let's see how nicole's doing. let's get invited to nicole's wedding. holy freaking shit. did my popularity SOAR when i was engaged! EVERYONE wanted to be my friend and i mean EVERYBODY!! of course, his cousins wanted to to make nice, that was a given. i had people i hadn't spoken to in YEARS wanting to spend time with me, and these people weren't even around when i got sick! but slap a diamond on that finger and blamo! instant bffs. this world is sick. oh and THEN when i break off the engagement, people are even thirstier! i'm getting slammed with messages from strangers wanting to know every dirty detail! heffas be hungry! seriously? and where were you when i first got sick? oh, and where are you now? riiiiggghhht....

and let's talk about the dear old friend whos wedding i was in. yeah. let's talk about that bitch shall we? right. i was always running for her. ALWAYS. i can't even tell you how many trips i made to Scranton. and if this gets back to her, GOOD. she needs to know how bad she hurt me. that girl was my BEST FRIEND. i mean, my BEST. we would stay up for hours talking about EVERYTHING. we did just about everything together. but i was the one who held the relationship together. i did the running. i made all the first moves. i was always going to her house, making the lunch/dinner/club plans, etc. so when i broke my foot we lost touch because i couldn't come out to play. i actually lost touch with a lot of friends because i was useless to them. i was no longer the fun party girl because i was broken. and then she texts me one night, how's my favorite gimp doin? my response? oh you mean the gimp with the brain tumor? yeah. that threw her off. so we talked and i freaked her out and she started to be there for me. she started to be the friend i needed. and then she got engaged. and i was excited. her bf kept me in the loop before anyone else. i knew the night of and called her 10 seconds after she said yes. we had one of the greatest friendships of anyone i ever knew. and then... she gets married and i became invisible. now, when people get married, things change. that i understand. but to flat out say to me, i'm married and i have a family. i don't have time for you anymore. to say that to me? how fucking dare you! are you serious?! of course, this is a few days after i break up with my fiance and she says this? because i really need that shit. and my parents went above and beyond for her wedding. i couldn't afford to be in it, but they did everything they could for me. everything. i was out of work, wasn't even on disability and had depleted all of my funds. i was ghetto broke. and for to end our friendship because i wasn't married and didn't have kids so i wouldn't understand what it was like... bullshit. but i guess i didn't matter to her then. right? so... it just ended. just like that. i lost, who i thought, was my best friend, just because i wasn't married and didn't have kids. i didn't know that was the criteria for friendship.

and now facebook has been getting on my nerves. i'm ready to get rid of it. i don't see a point to it anymore. what purpose does it serve? i see funny pictures or see touching videos. i don't really use it to keep in touch with people. i don't really care about my support groups. i don't really care about anything anymore, to be honest with you. i did just delete three people. two of the people i addressed in the first rant. and one that i'll be addressing later. i'm drowning into a pit of darkness and i'm not bitching about it, and then i see all of these people complaining about such trivial things that they can fix. and i'm sitting here like... HELLO!!! i can't see. i can't work. i'm still in recovery. my hormones are dead. i'm dead inside. most days i just want to give up and die. but am i bitching and complaining about it? no. but is anyone asking me how i'm doing? no. maybe if someone was checking on me, i might not feel so awful. oh, who am i kidding. i probably would because i have absolutely no control over what's going on inside of my body. none whatsoever. and i pretty much either don't care about what's going on or i hate you. or it. it's true. i'm numb. or i'm crying. this is my life. and it's lonely. really, really, lonely. and i'm told that most people probably don't know what to say to me. really? is it really that hard to fucking say hey nic. just wanted to check in. or hey nic how are you feeling? or hey nic how are you? or hey nic love you. really? not that fucking hard!! so what's the point in having a facebook to keep in touch with people when they just don't care to keep in touch and you're struggling to keep above water?

so. let's talk about my anger toward my old job. and how a bunch of shits they are. when i first got sick everyone was there for me. my 'friends' promised to stick by me, no matter what. and for the most part they were. when i broke my foot, i was still working and they made it fun. aside from the bitch who started the rumor that i broke my foot so i could spend time on the beach. right, how the fuck would i get there?! dumb cunt. and then we found out about the brain tumor. that was a lot for all of us to swallow. but we all pulled together and we were all gonna fight this together. and then i was out of work, after the surgery. but i still tried to keep in touch. i tried to be a part of everything. and then people started to drift. and i was alone. when i came back to work, everything was different. no one would talk to me. it was like i was a leper. rumors had spread about me behind my back, saying that i was talking shit about them while i was out. i don't know who i'd be talking shit to because i didn't have anyone! but the rumor was that i was spewing on facebook. ah lovely facebook. so my return to work was absolutely terrible. i was alone. in a dark office. and i cried, every day. and when i'd trip over something because i couldn't see it, God forbid they didn't leave it in my foot path, i was told that maybe i shouldn't be working. but my 'friends' weren't there for me. they were the first to abandon me. and yet they want to be friends on facebook? really? how bout no. how bout i was the dumbass that accepted that friend request because i thought things could go back to the way they were, before all of the hurt, but turns out... i'm still holding on to all of that hurt so no. you have been DELETED.

i'm dead inside. dead. dead. dead. really. i can't get excited about anything. at all. i really can't. i try. but... nada. nothing. i think i MAY be excited about my trip in June. i'm trying anyway. i tried to get excited about seeing my wifey a few weekends ago, but i couldn't. i just kinda went through the motions. that really sucked. i was glad i got to spend time with her, and glad i got to see hubster but excited? nope. even when she mentioned us going away in novemeber... nothin. this whole hormone thing better get straightened out and soon because i don't know how much more of this i can take. i really don't. my psychiatrist did some messing around with my meds but so far, i haven't noticed any difference yet. my sister says it can take up to two weeks to see a change and it hasn't even been a week yet. le sigh. fingers crossed i see something soon.

so chirp chirp.

i posted something about how upset i am that people have disappeared. i think what bothers me the most is that the people that i want to care don't. i want to be hearing from my cousins. i would go running for them. and they've all disappeared on me too. but... what can ya do? i'm just not that important to them and that's something i have to get used to. you'd think that after almost two years i'd be used to it by now. and maybe i should be. and i will be. but that doesn't mean that it doesn't hurt or that it doesn't suck.

maybe because i cared so much i expect people to care the way i do. but, i'm starting to not care anymore... about anyone really. that's this whole being dead inside thing. it's making things easier to deal with. you don't care about me? i won't care about you. the less i hear from you, the less i need to and the less i'll want to. the less i'll try to contact you and pretty soon... i'll end up deleting you. or? when i delete my facebook you really won't be hearing from me unless YOU contact ME because like i said, dead inside. i'm as warm as winter baby. just call me the ice queen.

chirp, chirp.

Tuesday, December 31, 2013

The end of an era

I could be writing about the end of 2013, I could be writing about the end of Cushings... let's see where this goes.

So, I had my BLA (bilateral adrenalectomy) on December 6th. I have no more adrenal glands, which means no more production of cortisol = the end of cushings disease. Now, what does this mean, you may be wondering. Well, without these vital organs, I should be dead,very true. BUT, I am going to be on a replacement steroid for the rest of my life. Should I not take my steroids, I could go into adrenal crisis and if not treated, well then, I'll die. Fun stuff right?

Let's talk about surgery. My amazing wifey and her hubs rented a hotel room out in Hershey so they could be with me every step of the way. How wonderful was that? It was nice having them there with me. My parents and my sister were also there with me. I had an amazing surgeon and surgical team. The doctors and nursing staff were also incredible. I was really blessed at this hospital. I even had a dilauded pain pump! WONDERFUL!!! I was able to control my pain medication! I wasn't in too too much pain, but I was pretty doped up so... that's probably why. I was in the hospital from Friday-Monday. Monday's car ride home was pretty rough, but I survived. The next few days I spent in my bed or on the couch. I couldn't dog sit, which was kind of sad, but there was no way I could handle Sammie, she's wild and likes to jump on my stomach. My stomach was really sore. Like, really really sore. I felt like someone beat the shit out of me. I felt worse being home than I did being in the hospital. I was also really nauseated, all the damn time. It was like I was never going to get better! I had my first appointment with my endo and I was zombified. yeah, dilauded and ativan don't mix... they're apparently not supposed to be taken together and I didn't read that memo... I was a hot mess. So, he ended up increasing my steroid, because he wasn't sure if I was just overmedicated or if I was going through steroid withdrawal. So, I ended up feeling a lot worse than I was. During the week I got more nauseous and dizzy and just completely awful feeling. I couldn't shower, couldn't get off of the couch, couldn't do anything. And the depression? oh lawdy, lawdy... let's talk about that...

the darkness decided to take over again. and when i say take over... i mean i was drowning. i didn't know how to find my way out. i was crying all the time. i was sad. i didn't know what to do. was i suicidal? you betcha. i was starting to regret having my surgery. i was feeling sicker. i felt like it was easier dealing with the cushings because i knew what was making me sick and i knew what to expect and with this... everything seems like it's crashing all around me. i feel like puking. i feel like crying. i'm sent into fits of rage for no reason. i feel like life would be easier if i weren't here. i had finally gotten a handle on my depression and the suicidal ideations and then... then i had my bla and everything got thrown for a loop. i don't know what you know about the adrenal glands, but they're in charge of more than just cortisol, they're in charge of more hormones. MORE HORMONES! If you've been paying attention, you know that my pituitary gland is dead and that i don't have hormones to begin with, or i have very little. and now? NOW? now i'm fucked royally. i'm completely all over the place. i've stopped talking to people because i can't stand the way that i am or the way that i'm feeling. i don't want to take it out on anyway and i don't want to burden anyone with the way that i'm feeling or with what i'm going through. there's that word again... burden. ugh. damn you chris and anthony. burn in hell.

and let's talk about the physical junk. there is none. i feel completely numb. numb. all over. like i feel nothing. and do i want to feel anything? sure. but i don't. i don't know what to chalk that up to. the cushings made it difficult before to feel anything physical and now it's slim to none. and i can go from zero- ice queen in a matter of seconds. either i really like you or i want you nowhere near me. like today. today i want everyone to be as far away from me as possible. like... go fuck yourself because i hate you. that's the kind of mood i'm in. why? i don't know. there's no real reason for it. i just hate everybody. hate my life. hate myself. hate everything. that's just today. yesterday? yesterday i got to spend time with my favorite kids and my favorite twinny and i had a few hours of happiness.

i need my meds straightened out. but no one wants to listen to me and that's pissing me the fuck off too. i'm about to take matters into my own hands. as a matter of fact, tomorrow i AM taking matters into my own hands and doing my meds MY way since no one is getting back to me. fuck this shit.

so, cushings is supposed to be on it's way out the door. and, there are some changes already taking place. my face is changing, it's already thinning out. people are taking notice. and my stomach is shrinking. it's noticeable in some pictures. i actually have boobs! who woulda thunk it? yes, i know, i've always had boobs, but my stomach started to become bigger than they were and now? not so much! and i'm only 3 weeks post op. crazy crazy. which is why i want to get this steroid thing under control so we can get the changes moving. and i can stop feeling the way that i'm feeling, even though the girls in my support group tell me i've got a few months of feeling like this to look forward to. yay.

so 2013... what has this year brought me... 3 surgeries. a trip to the renaissance faire. time with my wifey. concerts, concerts and more concerts. time with amazing friends. finally opening my mouth to people and telling them how i feel. getting closer to some and walking away from others. developing an incredibly strong friendship with my cushie sis Nikki.growing much closer to Lissa, whom without her, I don't know what I would do because she seems to make everything better. Her laughter, her smile, her jokes, she's just always, always, ALWAYS there. who knew that HANSON would give me one of the most wonderful friendships I'd ever have. I'm so blessed....making a new best friend who refuses to leave my side, which this could develop into something more and maybe it is and i'm just freaking out because i don't do this whole feelings thing because i never have. feeling something for someone leaves room to be hurt and i don't do that very well. i'll be as open and honest as anything, tell you whatever you want to know, but when it comes to caring about someone... that's a whole different ball game.
2013 has also brought me a lot of pain and suffering. A lot of tears. A lot of anguish. A lot of hurt. 2013 almost brought the end of my life, i came so very close to ending it all... but i didn't. somehow i made it through. 2013 brought me a stronger spiritual relationship. i'm closer to God, the angels, the orishas, the faeries, my guardian angel... I have a stronger faith now. I also have a lot more tattoos.

I'm ready to say goodbye to 2013. now that i have a new body, i'm ready for a new year and for a new me. every year everyone says it's a new year, new me... but how many of us can actually really say that? haha... I CAN!!! I feel like crying today, and I probably will at some point. But I'm ready for this new year to start and to see what it's going to bring me.

I don't think I ever did a thankful blog. Maybe I did. who knows, my brain doesn't always work. oh right. THAT IS WHY I'M IN A BAD MOOD. i had a shitty dream last night about being around someone and them talking shit about me to other people about my illness and that's what set me off. did this really happen? no. did this person do this? no. would this person ever do this? probably not. but has a situation like this happpened before? yes. so that's part of the reason for my shitty mood. now i remember. motherfucker.

so anyway. thank you for standing by me. my lissa. my wifey. my petey. my nikki. my cushies. my mama. my daddy. my sissy. my bruver. my friends. my family. you know who you are.
and thank you for showing me your true colors. you know who you are. 11 years down the drain. and to you, the girls who i spent an amazing summer with in 2012 and then you completely abandoned me in 2013, it felt really good ripping your pictures apart and pulling them off of my wall. thank you for being the bitches you are and showing me that i couldn't count on you, that you were there for me when i was healthy but then when the going got tough, you got going. to those of you who haven't been able to handle my sickness, i thank you for leaving, because if you hadn't left, there wouldn't be room for the people who really care and who can handle it to stay. so thank you.
to my doctors, my nurses and my surgical staff, you've been wonderful and i thank you for saving my life.
to my therapist and psychiatrist, without you i'd be lost.

so 2013, suck my dick. be gone. you gave me some amazing concerts. you gave me Christian Porter. you gave me Kelly Clarkson. you gave me Dropkick Murphy's. you gave me Jimmy hugs. But I'm ready for you to just disappear.

Tuesday, December 3, 2013

I hope I can do this

Well ladies and germs, the time is upon us. Friday the 6th... I officially am slaying the Cushings Dragon. Yup. My adrenal glands are coming out via bilateral adrenalectomy by an incredible surgeon at an amazing hospital. I'm not telling you who and where because some things are better kept private and I don't know who creeps on my blogs.

How do I feel about all of this? Well, if you had asked me a few weeks ago, I would have told you how excited I was! I mean, come on now! This is the end to my illness! This is giving me a shot at a semi-normal life! This is giving me a longer lifespan! I'm going to be ME!!! Well, a new and improved version of me. I'm calling this new version of myself Nicci 3.0. Nicci 2.0 was the cushiequeen. But anyway, I was filled with excitement and I was just thrilled at this surgery! I was counting down the days! I'm still counting down the days, 3 more! But now... now the anxiety has set in. I've cried every day since Sunday. I just can't keep the tears from falling. I'm not even sure why I'm crying to tell the truth. I think I'm more worried about AFTER the surgery. How am I going to feel? What's the pain going to be like? How am I going to care for the stitches? Will I remember to take my meds? What happens if I forget? What happens if I go into AI? What IS AI? How long til I'm better? How long am I going to feel like crap? Who's going to disappear on me this time?

And the big one... what's it like to be healthy? I've been sick for so long... I don't think I can remember a time where I was healthy... or not drunk, lol. I'm kidding. But seriously, what was healthy like? Was I healthy in college? My cortisol was super high back then and I know this because I was constantly running around and never tired. I was able to do things that other people weren't. I was nuts. And at times, I really thought I was crazy. Looking back, there were so many signs that I was sick, but how would I have known that? I just thought that's how I was. And now? Now I diagnose everybody. If I know one of my friends is having symptoms of ANY endocrine disorder I'm IMMEDIATELY referring them to a doctor. It doesn't even have to be an endocrine disorder, any type of sickness and your ass better be going to the doctor or you better shut the fuck up. Seriously. I don't want to hear you run your fucking mouth about how sick you are when you can take care of yourself and you don't. I was ALWAYS at the doctor and they couldn't diagnose me. They tried, but they were wrong and they wouldn't listen to me when I would suggest things. Thankfully, I broke my foot, got those blood clots, and had a bad headache. Otherwise, I'd be dead right now.

I've also been EXTREMELY happy since the beginning of November. Like, it's completely nutty and I'm not sure how I feel about it. It's weird. I'm not used to good things happening to me. I mean, let's get real. Look at all of the shit I've gone through in the past few years. When has there been light? I can pick out a few good spots, but mostly it's been one shitstorm after another and now? Now it seems like there is light at the end of the tunnel. I'm afraid to blink because it's all gonna turn out to be some sort of dream. You know what they say, when something seems too good to be true, it usually is. But, I've discovered some flaws, so it's not exactly too good to be true so that makes it good. But, it all could turn to shit in an instant so I'm trying to not get my hopes up, but a part of me has them up already, which sucks. But it doesn't suck in the same respect. I don't know. I'm really good at building walls, and it's really hard to knock them down once they're built, so I guess only time will tell, right? I'd like to stay happy though. It's a nice feeling. I like it. It's like the world is more colorful and it doesn't seem so scary. This doesn't seem so scary, Well, I wasn't scared of it to begin with, but you know what I mean. But, I'm not counting my chickens before they hatch. Like I said, I've experienced way too much. One day at a time.

3 days kids... and then my life changes. Having your adrenal glands out is a huge deal. I could die without them. I have to be on a replacement steroid for the rest of my life, if I don't take the drugs I will go into adrenal crisis, have to be rushed to the hospital or injected with my steroid and be taken care of. This isn't something that can be messed around with. I'd really like to not die. Now do you see why I'm freaking the fuck out? It'd be so much easier to just stay sick... Sure my life expectancy would be shorter, but I wouldn't have to deal with the medication monitoring and crap. It's some scary shit. I hear it's easy and not as difficult as I think it is. When I'm in the hospital I'll be on IV meds and then they're gonna switch me over to oral steroids and they're going to teach me what to do. I'm glad I like and trust my surgeon, otherwise I'd be fucked. I know that I'm in good hands, but still. It's alot to handle. I just hope I'm up to the challenge.,,

Monday, October 7, 2013

the knife

so... i was putting the dishes away today, and i happened to stumble upon the big kitchen knife. and all of these thoughts came flooding into my head. i'm sure you can imagine those thoughts. they were dark. and then i thought, but i'm not a knife girl, if i wanted to take my own life, i'd pop some pills. and then i thought, but i'm past that now. i don't want to be that girl anymore. i don't want to have those thoughts anymore. i don't want to have to fight those demons anymore. i want to be done and over it. i want to be the girl who's smiling every day. the girl who's got a positive attitude. who loves life and all of the people in it. the one who just says screw everything, i believe in the power of love and all that it entails! i'm me and i'm proud of myself. i love myself. i am amazing. i am beautiful. i am wonderful. i am worthy of love. i am incredible. my illness does not define me. i will overcome.

i would LOVE to be that girl. but the truth is... i'm not that girl. i was that girl. i used to be that girl. i'm trying to be that girl. but when you have demons, when you have a chronic illness, when you have to fight as many battles on a daily basis as i do... you start to falter. you fumble. you fall. you lose strength. you lose hope. you become a victim. yes. i know. i'm stronger than i realize. and i'm a survivor. i know this, i'm well aware of this. but it's a struggle. and i'm fighting to survive.

hearing people say just push through it. or it's all gonna be ok. or you have to be more positive. REALLY DOESN'T HELP!! you're not doing anything for me at all. unless you're walking in my shoes or living my life, you have no room to talk. i understand that you're trying to be helpful, but you're not. telling me to push through something when i'm having an incredibly hard day, doesn't do jack shit for me. just to let you know. some days i can't even get out of bed. i can hardly move.

the past few days, however, have been... i'm afraid to say it... kind of wonderful. i've been feeling ok and smiling. i've been happy and cheerful, for the most part, and the dark thoughts are alot less. they're still there. i'm still battling them, but they're easier to fight.

depression is a bitch. and asking me, why are you depressed? i can't give you a straight answer. it's a feeling of hopelessness, of lonliness, of loss, of darkness. i was so low two weeks ago, that as i felt the darkness wash over me, i didn't recognize myself. i actually felt my soul leave my body and look down on me. i didn't know who the girl was that i was looking down upon. she was so sad, so helpless, so lost. there was no talking to her. and her tears, they just wouldn't stop falling. i watched as she tried talking to her friend, and i watched her friend tell her how important she was and how she needed her here, and i watched myself tell that friend that she was full of it. it was scary. i hated being that low. i just didn't want to live anymore. i wasn't going to take my own life. i just wanted to sleep. sleep. sleep. sleep. i didn't want anyone to bother me. i made the mistake of voicing how i felt in one of my online support groups, because the cops showed up at my door. one of the members was worried about me; a person i had never spoken to before. and apparently she didn't read the whole thing where i said i was feeling better and i appreciated everyone's concern! but the cops showed up to make sure i was ok. so that was a little rough. mom had them in tears when she told them my story. the life i'm living isn't an easy one. and it IS amazing that i'm still alive. medically and emotionally speaking.

every day i'm fighting these demons, and on the days i win, i feel like i deserve a trophy! like today, i didn't want to punch anyone in the face. thursday i was in the store and i looked at a lady and i just wanted to deck her. i don't know why, i just did. i didn't hit her, obviously. i can't help these emotions. I HAVE NO HORMONES. thank you cushings disease for destroying that for me. and not everyone who has cushings loses all of their hormones. no no. some people get to be on replacements. but not me. i'm lucky enough to have a blood clotting disorder that prevents that. so i get to have a psychiatrist who tries to balance me out other ways. some days it works, some days it doesn't. and the days it doesn't... well... i need a bigger sword on the battlefield. or, i just become a casualty.

holding the knife in my hand today... stirred up alot of thoughts, alot of memories. october is a rough month for me as it is. yesterday was the anniversary of aaron's suicide. next week will the anniversary of morry's od. a few days before my birthday will be the anniversary of my love, al's death. so... i usually hate october. it's full of sadness. but then, as i'm typing this, i thought... there's also so much happiness. i have my birthday, my dad's birthday, twinny, ajs and matthews birthday. it's also fall so that means football games, marching band season and the changing leaves. so there are alot of good things. i think going to the old hs football game and then going to my cousins marching band competition really did alot to lift my spirits. it's nice to see him carrying the torch. even though it made me remember all of the hell i went through and then made me think... what the hell was i thinking? but then, i was mostly on crutches so... but there were alot of other thoughts. like my tattoo. a few weeks ago, well, last month i got a tattoo that says: you cannot be replaced. it's supposed to serve as my reminder that no. i cannot be replaced. i am needed and i am loved and there is no one quite like me. but two weeks ago i was ready to cover it up because i didn't believe it. i thought to myself, everyone's replaceable. no one really matters. we're all expendable. what happens when you leave your job? you get replaced. what happens when you leave a relationship? they find someone new. what happens when a friendship ends? they find new friends. so... are we really irreplaceable? just food for thought. things the darkness brings on. maybe that makes you sad but, that's what goes through my head.

like i said. every day is a struggle. i'm not the girl i descibed in the first paragraph. or maybe i am. maybe she's hiding away somewhere. maybe she's buried in here and when the demons are defeated she comes out to play. but every day there's a demon. every. single. day.

Wednesday, September 25, 2013

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. :)


Wednesday, August 7, 2013

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.

Sunday, August 4, 2013

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...