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Friday, January 25, 2013

my story

you've got questions, i've got answers...
how did you know something was wrong? when i noticed the weight gain and the hump on the back of my neck back in 2008, my doctor told me that i was fat and that i needed plastic surgery to help me. really doc? plastic surgery? and i'm a healthy person. i was working out 2 hours a day, eating salads and yogurt, limiting my alcohol intake, everything. but... nothing was working. i was fat and needed plastic surgery, her words EXACTLY. i was tired alot, and started experiencing depression and insomnia... but i kinda blamed that on my job as a CPS (child protective services) worker, dating a real piece of crapola, and having a busy lifestyle- i was going out all the time- dancing, the shore, the bar, working a SECOND job, spending oodles of time with mister crapola... i didn't FEEL sick, didn't LOOK sick, so i didn't think anything was wrong... i was just fat, right? but then... then in 2010 i was starting to get more depressed and forgetful, i was blacking out, which was really scary. i wouldn't know who or what things were and how i was ending up places... that i think was the worst. and people were starting to think i was crazy... hell, i was starting to think i was crazy. especially when i went to the hospital after one of my big black outs and they told me that nothing was wrong... good job misreading my catscan assholes. that was may 2010. in june 2010, just about a week later, i blacked out, fell down the steps, fell through my front door and fell down those steps. my brother took me to the emergency room where they misread that xray, i fucking hate that hospital, which is why i drive an hour for my er visits now. but anyway, i ended up breaking my foot. so, a few weeks into my break, i see a foot dr who diagnosed that break. and in july i start having crazy bad leg pain. guess who has blood clots? that's right... this girl! and then i had chest pain, so then i had to go to the bad hospital, where they actually got something right and found i had blood clots in my lungs. so i was hospitalized for a week. after i got out of the hospital, i was home for about a week when the horrible headaches kicked in, so to ensure that i didn't have clotting in my brain, i was rushed to have CT done... well, no clotting... just a brain tumor and brain atrophy... lovely. just lovely. and... this could have been caught in may... actually... could have been caught in 2008... because a hump on the back of the neck is a sign of a pituitary tumor. but whatever. can't go back in time, can we? nope. so... low and behold, something was definitely wrong, but i never felt sick. i was starting to feel sick to my stomach at this point... wouldn't you? i had emergency brain surgery in august, which left me blind in my right eye because the surgeon nicked my optic nerve, he did a crainiotmy because the tumor was so big. he said he got the whole thing, he lied. he left 50% of it in, causing it to GROW and wrap around my carotid artery. he sent me to his brother, and endocrinologist who kept telling me i couldn't have cushings because no one had cushings, that i was fat and needed to stop eating. are you fucking serious? and yet his brother, the brain surgeon, told me i had cushings. so who am i supposed to listen to?! the surgeon said i was having radiation. my eye specialist said no way and referred me to a different surgeon, who also referred me to a fabulous endo who i adore. and HE met with a TUMOR BOARD and they decided i needed ANOTHER surgery, a less invasive surgery, one that wouldn't put my vision at risk. so, boom. surgery number 2. april 2011. he got most of the tumor but said i'd need radiation because he couldn't get it all because of it being attached to my carotid and if he pulled it the wrong way i would have lost all facial movement and he didn't want to risk that. so july 2011 radiation. i was put on a cushings medication treatment. and i'd like to say that with the radiation worked. but, i don't freaking know. i lost some weight. but not enough to be convinced of anything.

how did you feel? when i heard the words: you have a brain tumor, i just bit my tongue. it was like, what else can go wrong? i felt like i had to be strong, i couldn't let anything else fall apart. i needed to power through it. i didn't cry until the doctor told me that he was going to shave my head. i was very upset about that. i had just gotten my hair cut and highlighted and i didn't want it to be ruined because of stupid brain surgery!
we didn't know much about anything so we trusted him when he said we didn't have much time to make a decision. it was like, ok, we gotta get this done. when i woke up blind i freaked out. actually, i was more worried about how my mom was going to take the news. i asked the nurses not to tell her until she came to the hospital. i didn't want her to freak out. but, godforbid anyone listen to me, they told her i was going for a CT so she knew something was wrong. i think i handled it pretty well, until i got home. then it was difficult for me because i didn't know what things were or where things were. i was forgetting things and bumping into things. i was irritated, frustrated, angry, sad, i felt alone... i still feel alone. i was humbled. i couldn't bathe myself, feed myself, it was annoying. it didn't last very long, though. i wasn't about to not shower in my own home. i got over that real quick. maybe it took me longer to heal because i pushed myself too hard, too fast but, shit had to get done and i wait for no one. i couldn't take it. i had a life to live!
i worked my ass off as physical therapy, too because i had a concert to go to and i wasn't going to sit there with my walker. i sat through lady antebellum with my cane. the pain was well worth it. i was in bed for a few days afterward, but i survived.
i felt like i was finally going to have answers. i dropped 35-40lbs after my first surgery. it was fantastic! and then, a few months later, out of nowhere, it came back. that was one of the signs that the tumor was growing... and it grew with a vengeance. so my happiness soon dissipated. i had one doctor telling me that i didn't have cushings, and then all the other signs are pointing to cushings, i was showing all the signs: fatigue, muscle aches, the thin skin, dizzy spells, the weight, the moon face, the round stomach, the cortisol levels, the headaches, the forgetfulness, the brain fog, the depression, the anxiety... so much more...  but no. he didn't want to listen.
i didn't start feeling like i was getting somewhere until i found my second neurosurgeon, dr.m, and my second endo, dr.v, they are my godsends. they are heaven on earth. they listen. they find answers. they sit with me, they answer questions, they research. they don't brush me off. with dr.v i feel like a person, i feel like he cares, i feel like we're going to be getting somewhere.

how do you feel now? i honestly don't know what's going on with my body anymore. i'm up, i'm down. i'm sick, i'm not sick. i'm prone to infection. my immune system is shot. i'm tired. my muscles ache. i've been battling a sinus infection since november that i'm having surgery for in a few weeks, thank god. i think i'm the only person i know who looks forward to surgery... i'm depressed, i'm not depressed. some days i can hardly move. i'm actually starting to blame alot of this on the sinus infection- pain brings on depression according to the neurologist. but depression is also a part of cushings disease. i know this and i know that the sun will always rise again. :) it's ok to give in to the darkness, as long as i know it won't last forever, even though when it consumes me, sometimes it feels as though it will. that's how today, i know i'm starting to get better, because i can say that it's going to be ok.
i feel frustrated. i'd like to not be sick anymore. i'm sick of being sick. i'd like to be better. i'd like to have answers. i'd like to know what the hell is going on with me. i'd like there to be a freaking cure for all of us. i'd like to not be so tired. i'd like to not need a nap every day. i'd like to be healthy enough to work. i'd like alot of things. i'd like to not worry so many people. i'd like to be able to be around people. i'd like to be positive 100% of the time. but it's ok that i get angry at this disease, because i don't stay angry. and i don't lie when i say i'm thankful for my life, because i am. and you should be thankful for your life, too.
i feel blessed. i'm alive, and not everyone with cushings disease is alive to tell their story. not everyone gets a second shot at life. i'm a walking, talking miracle and that's a blessing in itself. i have a family who supports me and loves me no matter what. i have friends, good friends, who love and support me. i have people who think i'm a champion, a hero, an inspiration, a diamond. i have people who i can lean on, depend on, even when i don't want to. i have a good life, even when i don't want to see it, even when it doesn't feel that way, it's good, and it's mine. when i feel like i have nothing to live for, i'm sure there's something. even if it's just to give someone else courage or encouraging words, maybe that's my purpose, i don't know. but... it is what it is...

it's not easy being me. i never said it was. my story is one that's not finished. thanks for writing these chapters with me. i know it's not easy for you either, but know that your love and support doesn't go unappreciated <3

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