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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.,,