a little sugar, a little spice

well... it's been a while, hasn't it? ALOT has been going on, and then maybe alot hasn't been going on...

it's been up and down and all around here...

i posted a little about my breakdown in my last blog, but i didn't make it really public, or, moreso, didn't post much about it, just that i had a breakdown. October 10th.full on breakdown. Now, I don't know if it was a nervous breakdown, or what you want to call it, but everything came to surface. Everything had been coming. Things had been getting bad. I'm just really good at keeping it all inside... I was like a tea kettle, or a volcano, and it was time for me to errupt... and errupt I did.

I'm blessed though, I was really taken care of that night, and for the weeks to follow...

But let's talk about this breakdown, shall we?

You all know I'm fighting cushings, which every day in itself is a battle and I think I've come to handle it quiet well. I'm not medicated to deal with the emotional aspect of it, which is changing today, as my neurologist so lovingly put it, he can't have his sunshine going dark :) I try to stay positive as best I can. I had some pretty rough things to deal with, family hurts. People telling me that my life sucks, that my friends are moving on and leaving me in the dust... and I guess I had starting to believe that. But really? That's not true. Those same friends that I was being told were going to leave me? Were the ones who were saving me that night. (I've come to these realizations POSTBREAKDOWN MIND YOU)

So breakdown, right. I was on bedrest for most of September and I felt neglected. I was stuck at home. I couldn't go anywhere, I could hardly walk. I was doped up most of the time and in excrutiating pain. I felt alone...

And before that, there was a bunch of hurtful stuff that happened in July/August that I don't even want to BEGIN to talk about because it just turns my stomach and makes my eyes water because these are the people who were never supposed to break my heart. Oh wait, but I'm Nicole, he'd never hit me right? He didn't hit me, but it doesn't mean I'd ever trust him again. Or that I like him. Or that I can even stomach the thought of him. Trust? Right. I've turned over a new leaf. Once you've broken my trust, that trust is DEAD. GONE. BYE BYE.

October's always a hard month for me. There were alot of deaths that month. And it was my birthday. I was just... not feelin it. I never do.

I just felt myself slipping. And I wasn't angry anymore. I wasn't sad. I just felt hopeless. I didn't want to die. I just didn't want to exist. I just felt... blah. I didn't want to be anymore. I felt like no one would care either way.

A close friend of mine had an abortion. I had one. But this one...I just couldn't handle it. And the pressure was on me to deal with it. To take her for the appointments. Which made me late to my doctors appointments. Which added more stress to my life. Which I can hardly handle.

And then there's the stress of day to day life. I don't work. I can't work. I miss working. I miss being a contributing member of society. Some days I feel like I'm just useless. What am I good for? What can I do? I give smiles and sunshine, and if I'm not giving smiles and sunshine, what good am I?

And then I have people telling me that I'm not good enough. That what I feel that I'm good at, I'm not. Or that they feel sorry for me. I don't need your sympathy. I don't need your pity. Don't feel sorry for me. Because I don't. I'm going to be ok. I'm just not ok.

When you ask me how I'm doing, and if I say, "I'm managing" or "I'm not ok" I AM NOT OK!!! listen to me, would ya?

One of the benefits of having a meltdown at that beautiful bar that I like to hangout at with my amazing friends, (and no, i don't drink) someone finally listened! as my wonderful friend put it, "you're always saving everyone else, maybe tonight you need to take your cape off and let someone save you".

i was there for a few hours. talking to people. hugging people. having people LISTEN TO ME. and not just, uh huh, yeah ok, listen. i mean, REALLY listen. and they are beautiful people. BEAUTIFUL PEOPLE.

i talked about how scared i was that my dr wants to stop my cushings medication to see if radiation was successful, bc keto isn't something i need to be on for a while. i'm freaking out bc of the anxiety, the weight, the blowing up, the idk what could happen. and they all stepped up and offered to come to my house and sit with me.

after my breakdown? i had people sitting with me. taking time to be with me. spending a day with me. a few hours with me. talking with me. it's been good. i've always been the one to reach out to everyone, make the calls, make the plans, but it's hard for me now. and i feel like i shouldn't always be the one to do it. but i also think i need to do it, too.

idk. sugar and spice.

so... it's been 2 years, 2 months and 4 days since my first surgery and 3 days off the ketocanazole. i'm down 29 lbs so... that's good... i wish it were more but i'll take what i can get!

i took that picture before going to the psychiatrist today. not bad, right? :) starting to feel beautiful again, and trying not to let the negativity of others bring me down. and i'm totally in love with the hat my little brother got me for my birthday!

so, what else... my disability came through, praise God. it's nice to be able to help out my parents. but... since i no longer qualify for SSI... my MA has been suspended so, in dec that means i won't have health insurance? and the only reason i know that is because i called today to find out about whether or not i will have MA once medicare kicks in in january...

so then i call my insurance company, and THEY tell me that NO my insurance has NOT been suspended... so wth. i'm just a basket of confusion...


just one thing after another i suppose...

over and out

i am really ready to just be done with everything.

it's like whatever i say is wrong.

whatever i do is wrong.

some people don't believe that i'm really sick. what more do i have to do? really? 3 brain surgeries aren't enough? a chronic illness isn't enough? bedrest for most of september isn't enough?

what about the fact that i haven't been leaving my house? how about the fact that i've been pretty completely silent? does the fact that you haven't heard my voice or seen my face worry you in the least bit? it seems that it hasn't. and that worries me, or well... no. no it doesn't anymore. i'd say it angers me, but it doesn't even do that anymore. i've fallen so far deep into this darkness that all i really feel is numb and sad. and sad and numb. and all i really want to do is cry and sleep and cry and sleep and maybe... just maybe drive my car into a tree. or into a ditch. or off a bridge. maybe. but then, you probably wouldn't notice if i was gone, would you.

no, this isn't a cry for help. because, i wouldn't really do it. just stating how i've been feeling. and i've been feeling this way for quite a long time now.

it all came to surface last wednesday. i had a complete breakdown.

fuck it. i can't even type anymore.

ATTENTION CUSHIES!!!

CAN I HAVE YOUR ATTENTION PLEASE?
can i have your attention please?

all cushings patients, possible cushies, this is for YOU!!!

this is a message from the cushiequeen, aka ME

we have what is called, CUSHINGS DISEASE or SYNDROME or CYCLICAL CUSHINGS or... THE UGLY DISEASE... OOOOOOooooooooo.........

well, NEWSFLASH: CUSHIES ARE HOTTIES! i dont care how much you weigh, how much stria you have, hair you grow, you are freaking beautiful, are you reading this? YOU ARE BEAUTIFUL. CUSHINGS WILL NOT DESTROY YOU! YOU ARE FABULOUS! ♥

i know we all have our bad days, trust me... i've been sinking into the darkness so much that it's almost been impossible to crawl out of. i've been so incredibly sick recently that i've been on bedrest for two weeks. and i just... pretty much hate everyone. and october is a very rough month for me. while i should be enjoying it, it's my birthday month, my best friends got his lead role as an actor, i'm going to a wedding, i'm also mourning the loss of the 6 year anniversary of some suicides of a few friends and the tragic death of another. i hate this month. and im trying to stay strong, but this disease has made it harder...

but you know what? i can't let it beat me. i can't. and i won't. and you can't either. you are more beautiful than you give yourself credit for. remember that. when you're struggling and don't think that someone gets it, we do. when you think that no one loves you, we do. we're stronger together. and we will get through this. 

you're beautiful. you're a star. don't let anyone knock your shine ;)

pills, pills and more pills...

instead of saying, there's an app for that... in my life it's... i have a pill for that.

seriously. you should see the arsenal of medication i have. pain meds. nausea meds. life saving meds. blood thinning injections. steroids should i go into an adrenal crisis. something for anxiety and panic attacks. headache meds- because i can't take regular tylenol. something to stop me from going apeshit on someone. something for acid reflux. breathing medication. c.diff medication. antibiotics that i need to keep around. MRSA cream. bacitracin-because im allergic to neosporin. vitamins.

you want it? chances are... i got it.

and you know what? im getting to the point where i am ready to be done. i just am done. i don't want to take anymore pills. i don't want to inject myself every day. i'm sick and tired of being sick and tired all the time. ok, so it's not ALL the time. but september really took a toll on me- physically and mentally.

i really feel like i'm heading for a break down. and maybe that's why i've blogged two days in a row. maybe that's why the douchebag at the supermarket got to me and i broke into tears in my car...

oh right. my good time at giant...
so there i am. at giant. checking out. and i swiped my fs card. paid the rest in cash, and then i'm putting my bags in my cart when the guy behind me LITERALLY RAMS ME WITH HIS CART. I said, could you give me a second? His reply? Could you move a little faster? What the hell's wrong with you lady? My reply? I'm sorry. There's a reason I'm disability sir.

Are you fucking serious?! what the hell is wrong with people!? and this guy had to have been in his 40's or older. like seriously. he grew up in a time when people should have learned respect. 

so i brought my stuff to my car, walking slowly because i don't feel well. and i have tears streaming down my face. so after i put everything in my car, i walk back into the store. i'm not sure what i was going to do. he wasn't there, so i was going to tell the store manager about what had happened and then i thought... was he going to care? probably not. the cashier didn't say anything. she ignored it, so why bother?

so... i walked back to my car. sat in it for a while. started to cry and then thought i could drive home. nopers. so i drove to the back of the lot. and just bawled. i don't know if i was crying because i was treated like that, because my back hurt... shopping carts hurt, or just from everything i've been dealing with... 

but i'm home... and i have a pill for that. i have an arsenal. and i could take enough where i could never have to deal with ignorant pieces of shit again...

and then i think... that wouldn't really solve anything either. i'd much rather fight back. 

i look forward to the day where i no longer need to take 20 pills a day. not the day i have angel wings and am walking with al and aaron, though i know i will cherish the day i see them again...

this is why i hate october. 

anyway. i really am sick and tired of being sick and tired. i do have my good days but lately... it's been more bad than good. and i'm not liking that. i want more good than bad! 

and i'd really like people to reach out. i'm tired of reaching out. call this a cry for help or a cry for attention, call it whatever the hell you want. but if you care- do something about it and freakin prove yourself. because im slowing becoming done with you.

actually, i think i've already become done with you. if your picture's not on my wall... chances are your dead to me. and if i've taken your picture off my wall, then yeah... you ARE the weakest link. goodbye.

demons sure do come out at night...

i know it's been a while, and i had planned on writing about california, and i will. i have it all on paper, i just need to upload it, i've just been really, really sick- physically and emotionally.

when i got back from california, i was on bedrest for two weeks. TWO MOTHERTRUCKING WEEKS. seriously. talk about major sucktasticness! my goodness. and let me tell you what that did for my mental health, a whole lotta NOTHING! especially because my new soulsister was on the other side of the flipping country. yeah. the person who understood what i was going through, physically and emotionally- lives forever away... NO BUENO!

so... anyway... when i'm physically ill, that seems to be when i'm under attack the most. i feel my lowest. the darkness likes to take over. my heart sinks. it just keeps breaking. anything and everything hurts. the fearies seem to have disappeared. i know i need to do something to welcome them back, and i will. i miss them. whatever, think im a nutbag, i really don't care. you have your beliefs, and i have mine. but i hurt. and i just want to cry...

tonight, as im washing the dishes, everythihng that had hurt me in the past just seemed to have come up. and im not talking dbag anthony stuff. because that's been dealt with. and, really, i could probably not even say dbag in front of his name anymore. that's done and over with, and i don't hurt anymore. i really feel NOTHING and it's a beautiful thing. but, i was washing dishes and got ANGRY at chris for trying to keep my meds from me. yes, he did that. he felt that i didn't need to have them back when we broke up. knight in shining armor right? his stepdad is the only reason i got them back. fucking piece of shit. seriously. he's a fucking scumbag and i really can't wait til karma gets him. or someone stomps on his hearing aids. because he is a complete fucking asshole. like, why would try and keep my medication from me? were you planning on taking my pills? were you going to inject yourself with my blood thinners? honestly, what good would that do you? that's the only thing that pisses me off. i don't care that it's over. the only reason we were together was because i had the whole 'someone needs to love a sick girl' mentality. did i love him? no. was the sex good? oh god no. it didn't last long. and it was just BAD. he was a good kisser. and when he was around, we were good friends. ill give him that. he was a really good friend, a good listener. which is why i tried to convince him from the beginning we should only be friends, but no. he wanted more so i tried. but anyway, WHY withold my meds when you of all people know what that's like? i don't know why that came to me when i was washing dishes but it really pissed me off.
and another thing he always used to throw in my face- the fact that i was gonna get better and leave. or that i would go to the movies. like, grow up. im independent, always have been. i never relied on anyone. that's just not my thing. im not the upyourassallthetimeclingybitchassneedamantosurvive kinda girl. jump off my vagina you fucking prick. seriously. im sorry you were breastfed until you were 18. that's not my fault. like really. get a life.

and then im washing dishes and ROB pops into my head. all the fucked up things he did- the choking, the trying to break my ankles, the throwing me over the tables, the telling me my headaches weren't real, stealing my money, the naked pictures of his exes on his cellphone, all the crap he put me through...

it's like when i get as sick as i am right now... all the bad comes to surface.

and it's weird. if you're wondering what kind of sick i'm talking about, i'm talking about puktastic sick. my acid reflux is kicking in wayyyy harsh. like, making it difficult to sleep harsh. water is repeating on me, it's difficult to do anything. everything burns. dairy seems to help, but i'm lactose intolerant so that's a bag of fun. but it's strange, when i get the acid reflux, the past repeats on me... it's kinda nutty, kinda crazy... but it's true.

so i'm trying to figure out how to deal with all of this. and i'm not sure how to do it. i think i'm going to smudge my room, maybe smudge the house. for those of you that don't know what smudging is, it's when you take a stick of sage, or a bowl full and use a feather, and blow it around the house, asking Spirit, God, the angels, archangels, Orishas, whatever you believe, to cleanse your home and yourself of negativity and negative energy. I also plan on lighting my black candle to ground the negativity, kill it. I forgot there was a full moon this weekend so maybe I need to reenergize my crystals...

Blah. I really don't like this whole being sick thing!

BUT... I am looking forward to October, and I never ever look forward to this month. I used to, because it's my birthday month but... then everyone started dying... the suicides, Al's death... it just became a month I wanted to get through, and now? Now I'm excited. Huey has the lead in Sherlock, Jen's getting married, it's a BTF weekend,  I have my birthday, Ivory has her birthday, we're supposed to go see RHPS at the Sherman, Halloween... I think it's going to be a kickass month, I really do :) I'm just going to keep moving forward and keep training...

Training? Oh right. The NBTS 5k is November 4th. We're going as the Cushings Crusaders. At least me, Christine and Laura are. Mike says he is, too. I have to repost the link. I have people telling me they want to walk with us but,.. the clock is ticking and I'm not going to be up people's asses. You wanna do it? Great. But don't expect me do remind you every day. It's not my job. I'm not your mother. That's not how this works.

I'm in rare form tonight. Thank God "Once Upon A Time" comes back on. I'm lacking my fairy tales. lol

I've been finding it harder and harder to come out of the darkness. It's been pulling me under, I've been sinking. I don't know if it's the cushings, that I've been sick, or that there's been so much bad going on all around me. Maybe it's a combination. I really need to go back to therapy, and I have absolutely no problem admitting that. I love my shrink, she's amazing. But when I'm this sick, I can't get there. I can't physically get there, which sucks big ol' monkey balls.

I've been telling people how I feel, though. I think that might be part of it. Instead of holding it all in, and letting myself tell those who have hurt me know... but really... I've only talked to one person. Maybe it's because I only really cared to save that one relationship. The other people who have hurt me, I'm kinda just like... go fuck yourself. But this other relationship, I kinda don't want to live without it. hmm... but, as the other's go, I'll put on my brass bra and talk to them, if it's that big of a deal.

Demons... need to be slaughtered, not played with.

There's a reason I'm called the CushieQueen. I run this shit. I don't back down. I look good in my crown.

fall in love with the person in the mirror.

dios mio...

maybe it's just me. and maybe im just having an episode. or maybe im just on edge. or maybe im just... just. today. but really?

EVERYONE IS BEAUTIFUL. EVERYONE. DO YOU HEAR ME?! DO YOU!?

YOU ARE FUCKING BEAUTIFUL. GO. NOW. LOOK IN THE FUCKING MIRROR. TAKE A GOOD HARD LOOK AT YOURSELF. RIGHT NOW. ok, maybe not right now, finish reading this first. YOU ARE BEAUTIFUL. YOU ARE A WORK OF ART!

double chins? so what! who cares if you have hair in the wrong places, or you don't have hair. maybe you have scars, or have funky birth marks, or are overweight or are underweight. maybe you don't fit the mold of what society says is beautiful, but you are...

i really wish everyone could fall in love with who they see in the mirror. i really do. it's taken me a few years... ok, more than a few. let's say, 6 or 7 or 8. to fall back in love with myself. but i did it. and it's well worth it. yeah, i have days where i look at myself and am like, blech. BUT, that's why im glad i FINALLY listened to the advice of my beloved friends and did the affirmation things. i was told to tell myself positive things about myself every day. well, who really wants to do that? so, i took it a step further so i had NO CHOICE. go big or go home, right?

i see these every day. so i have NO CHOICE but to see positive things about myself. i didn't come up with all of these by myself, either. i asked my friends. i said, so, what do you like best about me. why not? who better to ask then the people who love you the most? and they gave me some really awesome answers. one of my favorites came from my cousin: "one of the things i love most about you is the fact that you can walk into any room and change it. you just bring it to life." i loved that. and then my friend: "i haven't known you very long, but one of the things i love about you is that you can make anyone feel welcome and loved. you did that for me and you do that for everyone you meet". and people who've read my poster saw that and agreed. so, asking them was actually quite beneficial for me because it made me feel good. i came up with alot of it on my own, though. i had to. i needed to think of what i liked most about myself. and i did. i like alot about myself. and i also wrote down things that i wanted to like about myself. the whole "i have a beautiful body" thing... that came from a boy i know. he also came up with the whole, "you're sexy, you have the most kissable lips" that sent my cheeks bright red but... hey. i'll take it. i kinda thought that asking him would give me some good ones... but nothing like that!

i encourage you to fall in love with yourself. we live in a society that encourages us to point out the bad in ourselves, and in others. but why? why do we just keep hurting ourselves? why do we get joy out of hurting others? it just doesn't make sense to me. and we do it all.the.time! we need to stop.

everyone's always sayin no negativity blah blah blah. and yet... that's all you people do! no drama... and yet, you're the one's creating it! WELL FUCKING CUT THAT SHIT OUT ALREADY! cheese and rice, man. do you know how much better your life will be when you start to breathe and just be happy with yourself and stop ripping other people apart? that's not what it's all about. and stop ripping yourself apart. tell the negativity committee to take a seat. they're not meeting today.

really. you're beautiful. and stop looking for bad things to happen. look for good things to happen. because they're going to. if things are going really good, don't say "great. now something bad is gonna happen". say, "what else awesome is gonna come my way?" when you change your thought pattern, you'll in for some good surprises. trust me. i'm experiencing daily.

when i say cushings is one of the best things that's ever happened to me- i'm not kidding. i've gotten rid of most of the bad people in my life. i'm doing it daily. i'm working on getting rid of my bad habits. i'm loving life more. i'm being more positive. i'm making positive changes. i'm loving myself more. i'm appreciating myself more. i'm taking a stand for what i believe and not allowing others to talk me out of it. i don't tolerate being talked down to. i don't tolerate being treated like garbage. don't like me? bye. i won't sit here and cry. if you don't want to be a part of my life, there's the door. and that's ok. it's quality, not quantity. i don't care if you've been my 'friend' for 10 years or 10 minutes. hell, i don't care if you're my family. buh-bye. i don't preach hate, either. and i won't listen to it. there are just some things that need to be done. and i care about my health. and if my not doing something with you or going out or whatever because i'm sick upsets you, then you can jump off it, because i'm not going to jeopardize my health for anyone anymore. it's crap. so... yeah.

anyway, fall in love with yourself. the more you love yourself, the more your inner light will shine. and the more your light shines, the brighter the world around you becomes :)

Pituitary Bill of Rights

I don't know who wrote this, but I saw this in one of my support groups:

PITUITARY PATIENT BILL OF RIGHTS

Preamble

As a patient afflicted with a chronic, often lifelong disease, I wish to affirm the following:

I did not bring this disease upon myself through any form of omission or commission.

I know, however, that my illness and its many symptoms and manifestations are poorly understood, and often imperfectly treated, with results that are unacceptable in any medically civilized society.

I affirm that I am a valuable human being: to myself, my family and the society in which I live and work. My right to proper diagnosis, care and management shall be second to none.

Either I or my fellow patients may have our lives and the length and quality of life at constant risk.

I cannot allow my rights as a member of society to be trampled on. I realize that it is not currently politically popular to give me my fair share of quality medical care, research, education, and mental, moral, psychological or societal care.

For these and other reasons and on behalf of myself, my loved ones, my family, and my fellow patients, I claim the following:

Our Rights

Pituitary diseases, tumors and the resultant hormonal imbalances shall be recognized as a serious, major public health problem afflicting a large segment of the world's population.

The financial and intellectual resources of my government and our public and private health services shall be as fairly allocated to me and my disorder as they are to any other life-threatening and life-altering disease.

I have a right to an early and appropriate diagnosis, treatment, care and medical intervention by the experts in these fields of medicine. I have an inalienable right to be told of - and allowed to use, whenever possible, any and all medications and treatment methods past, present or future -which will complete or assist in my healing.

Upon completion of any medical evaluation, treatment and care, I am entitled to the emotional and psychological care afforded anyone else with psycho-socially affective disorders.

I reaffirm my right to be treated completely so I may reclaim my place in society and my family as a fully functioning and contributing member.

I shall not be discriminated against in my workplace or any other part of society because of my physical, mental or emotional state.

There shall not be any financial, insurance, job, or promotional stigma attached to my diseases discovery, medical care or emotional recovery. My future life shall only be limited by conditions not under man's ability to rectify.

My family and coworkers have a right to be informed and counseled about my illness and Its many manifestations. In order for them to understand and accept the temporary limitation to my job performance and my family obligations, they must if possible, become part of my healing environment.

I reaffirm to the world: I am a valuable member of the society and family of man. My life is too valuable to waste. It is too costly to society and too detrimental to my family to allow me to merely exist at their sufferance and largesse.

I have the right to be believed! Just because a physician has not yet heard of, or seen, my symptoms before, does not mean they are not real and deserving of medical care and further investigation.