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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...