This is me, and the life I've been living. In July of 2010 I was diagnosed with: a brain tumor, a blood clotting disorder, and Cushings Disease. Since then, I've had 3 brain surgeries that left me blind in my right eye,a BLA, I've almost died 4 times, I'm out of work, I've had my heart broken and saw who my real friends are. this is my journey. One I refuse to give up on, no matter how bad it gets... and trust me... it gets bad.
and in between, while things were good and there was wedding planning, the amount of people who wanted to be around me was ridiculously insane! everyone wanted to have a part in the planning, in knowing what was going on. everyone had something to say. people i hadn't talked to in ages were commenting... the sick girl fell in love... her prince had come... blah blah blah.
i fell for it, too. i didn't love him. i wanted to love him, but i didn't. and the sex was terrible. and he's gay. so ya know, that's kind of a deal breaker.
but anyway... i fell for the people who wanted to be around. apparently a $5000.00 ring meant i was a big deal. that meant that people wanted to spend time with me. but, people should've wanted to spend time with me beforehand because i'm hella awesome! i just didn't realize that.
and then there was the break-up. and, i being the wonderful person i am, refused to blow his shit up. i still don't. people still don't know all of what happened. unless you're really close to me, you'll never know the full story because it's none of your business. yes, he's gay, but that came out after the break-up. there was... nevermind. anyway, it never would have worked. i didn't love him, he didn't love me. he was abusive, etc.
but, the people wanting to know, and asking me questions... wowza! and where are said people now? what happened? was i only important because i was engaged? because there was drama? i do believe that was the case.
because they're ghosts now.
i hate facebook. i really do. i don't post my personal business like i used to on purpose. there's way too much drama. if i feel the need to get shit out, i'll rant. or i'll blog and post the link. there's a not so friendly/uplifting at the end post up now but... i'm just sick of all the negativity i see.
people can make changes in their lives and they don't. they'd rather play the victim or sit and cry about it. get the fuck over it. you can make changes in your life and you don't. well, too damn bad. we're responsible for what happens to us, most of the time. is it my fault i went blind? no. but i choose what comes next. i can sit and bitch and moan and whine and cry about it, or i can adapt and change and make positive steps to make things better and that's what i do. do i get annoyed when i trip and stumble and fall? of course. but, this is my life now, and this is what i have to do. i hate when people don't just DO things. stop whining, start doing. don't be lazy.
lazy. ugh. too often that word gets abused. or misused for us sickies. but then i see people take advantage of the system that we sickies NEED and then we sickies get screwed. like me. i'm losing my health insurance in december because my ssi is gone and my medicaid stopped. medicare doesn't kick in til january and the adult basic program got cut. so because i didn't get knocked up or have a drug addiction, i'm screwed. i can't get sick the month of december, or have a flare up or anything. i'll be walking around in bubble wrap. woohoo.
i still don't understand why people take their lives for granted. you don't know how good you have it. you woke up didn't you? your heart is beating. yeah, you might be going through a rough time right now, but it's going to get better. and if there is something that YOU can do to make it better, and i'm sure there is, DO IT. even if it's eating a piece of chocolate, or smiling at a stranger, or letting someone get in front of you in line, DO IT. you'd be amazed at what a little bit of kindness can do for your soul...
and another thing. APPRECIATE SOMEONE!!! i said it. i'd like to know i'm appreciated, i really would. i'd like someone to say to me, nicci, i appreciate you. i really do. thank you for being you. it'd be nice to hear. i hear it from danielle, ivory, amanda, my wifey, mama lee... but it would be nice to hear it from someone that i don't hear it every day from. because, i appreciate YOU and i try and let people know how important they are to me, all the time. i don't want my friends and family, the people i care about, to think that they don't matter, because you do. you're important to me and i adore you. i wouldn't tell you that i cared if i didn't. i wouldn't involve myself in your life if i didn't care. i wouldn't argue with you or try to hold onto these relationships if they didn't matter, would i? i'd just let them die off, which is what i've been doing with others...
and now... peeing in jugs. yup. it's that time of year again. i've had to stop my cushings med, which you'd know if you'd been keeping up with my bloggity blog. since i'm losing my insurance i have to do it a month early. i turn in the jugs tomorrow and we see what my levels are and what kind of success radiation has been. that's just a little stressful.
and then there's foot surgery on tuesday, which my darling danielle is taking me to.
and the insurance stress
and the people stress
and the insomnia
and the cortisol highs and lows
and the dizzy spells
and the cushings sucking ass
and the holiday
and we saw TSO tonight, what an awesome show.
and the people garbage.
so yeah. cushings has been kicking my ass. so i'm anxious to see what the peejug is going to reveal. oh, right. what am i talking about? i pee in a jug for 24 hours and that monitors my cortisol levels. my dr will look at the results and see if they're high or low. i've been off the cushings med for almost a month and we'll see what kind of change, if any, there has been. so then we'll see if i need to be put back on it.
and yes. i am really blind in my right eye. no my brain surgeries were not a joke. i am not kidding when i say i can't see. i really can't. it's not funny. don't joke about it. making cracks on a person with a disability is NEVER funny. how old are we? 5?
that's another things. kids need to learn respect. oh my. i need to stop or this will just keep going. i better sleep tonight!!!
part of me feels like i need to apologize for me, but i won't.
part of me feels that i should apologize for what happened TO me, but that's not going to happen either.
instead... i'm going to thank you.
and please, don't take credit, because there are some of you who are going to say, i've been around, i've been there for her, and you're a lying piece of shit who needs to jump off it because you went running when things got tough and you're no longer in the picture because there's no longer room for me in your life. and that's fine. you're reading this and you probably are thinking, what is she talking about? i was there. sure, you were. at some point. and that's fine. so thanks. you served your purpose. maybe a season. but seasons change. so make like an autumn leaf and go fly away. your colors changed, you've fallen from my tree. goodbye.
this is to those of you who are here. who are now. those of you who haven't left. who have stepped up. who have shared in my heartache. my struggles. my frustrations. you've cried with me. you've sang with me. you've laughed with me. you've sang to me. you've helped me find my joy again. you've helped me find the song in my heart when i thought i had no song left to sing. you didn't leave.
and i thought you did. so many times i had felt like you forgot about me, like you had moved on without me, like i didn't matter. like my tears didn't mean anything. that my struggles meant nothing... but that was never the case, was it? you were always here, weren't you...
if you've been paying attention, any attention at all, you know that i have this little disease called CUSHINGS. and you know that it sucks, it sucks A WHOLE LOT. you know that i put on a brave face and i smile through it the best i can. now, if you've done your research, and by research i mean more than just read my blog you know about what comes with it. in case you haven't, i'll fill you in... this is what i've been dealing with: - SEVERE mood swings angel-bitch-psycho-crying-angel real fast and not know why - SEVERE panic attacks - SEVERE anxiety- to the point where i'll be afraid to leave my house
- night terrors
- 29 and in menopause
- i can't conceive, i can't give birth... that's alot for a young girl to deal with. ALOT. - confusion - forgetfulness- who/where i am
- memory loss- who/where you are, what we're doing, what we're supposed to be doing, past events, the past few years - dizzy spells, nausea, falling into things, stomach issues, MRSA, infections, tumors, sinus junk - migraines that confine me to bed - 3 brain surgeries
- balance difficulty
- loss of sight in my right eye
- bone loss, which means my bones are very brittle
- i've shrunk- i'm now 5'11 1/2 and i used to be almost 6'1
- i weighed almost 300lbs and i used to be 185...
- my body went through crazy changes. i hated the way i look. some days i still do.
- a moon face.
- easy brusing
- scared that i'm going to die. because this disease is a silent killer. and no one understands it. doctors don't get it. we don't get it. YOU don't get it.
that's just a little blurb. so... it hasn't been an easy journey. it still isn't easy. i mentioned in my last blog about a breakdown i had back in october. well, that breakdown probably should've hospitalized me. i'm not even kidding. i thought about it. signing myself into the hospital. not around here though, pmc sucks monkey balls. BIG monkey balls, god i hate that place. but yes, i did really think about it, alot. alot, alot. i went and saw my psychiatrist, and i have no secrets, and no shame in saying that i cried alot when i talked to her and she said, you don't need an antidepressant, you need a mood stabilizer. and ya know what? i finally caved. i said ok. i hate being on medication, and i've resisted for so long. but, i said ok. i did not want to be the crazy girl on medication!!! but, ok. let's try it. it's not fair to my family or my friends or to me to be snapping all the time. to not understand what's wrong. and my dr, she said, you're not crazy. you had a tumor take over your brain nicole. you need help, it's ok to take the help. so, ok. and you know what? i'm getting there. i'm understanding things more. i'm not as sad. i'm not freaking out all the time. it's only been a week, but i'm seeing a difference. granted, i just kinda yelled at my mom, sorry ma. but, it's a gradual thing. and i'm gonna get there. and i'm gonna be ok.
but you... you haven't given up on me, have you? you've stuck by me. mood swings, crying spells, happy, sad... all of it.
and when i wanted to drive off the road, you wouldn't let me. when i wanted my life to end, you made me see the value. you all just wrapped your arms around me and said it's going to be ok. we love you. you love you, it's in there. you're gonna find it again. when i couldn't find my song, you sang it to me. you didn't leave me, you were always here. i just... i can't always see it.
sometimes the brightest stars need the darkest skies to shine. i love you for shining through my darkness
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...