Follow by Email

Monday, August 29, 2011

a glimpse into the past year 5.30.2011

i posted this in my cushings support group. most of you have NO clue as to what im going through. alot of people judge me, think im sittin home having the time of my life. of course im gonna smile through the pain asses... it's what ive done all my life. you think im gonna let freaking almost dying a few times stop me? ha. funny. but seriously, it sucks. but read. see. eff the haters :) you just make me fight THAT much harder!

about 4-5 years ago I went to a dr about my buffalo hump. her response? you're fat. you need plastic surgery to get rid of it (i was about 4 sizes smaller at that time. fat? ha no) i worked out like a crazy person. ate like a bird. very health conscious... as time went on... i was gaining weight. i saw a difference maybe 2 years ago, my face was rounder and i had gone up a size or 2. i thought it had been because of the relationship i struggled to get out of (i was being beaten)... but no one seemed to be able to help. i work a very high stress job and had a crazy emotional relationship. i was having blackouts and not remembering who/where i was or what things were. my speech was starting to slur too. but, the drs thought it was the seraquel. i went to the emergency room, they did a CT and told me it was all in my head, nothing was there, gave me some tylenol and i went home. so? i weaned myself off the pills. and then what? i fall down my inside steps out the front door and down those steps, "spraining" my foot. do i remember? nope. another black out. the ER said it was a sprain. great. so im out of work for a week or so. and the girls at my job? yeah, think i did it on purpose to go to the beach. did i go to the beach? NO! i cancelled my trip because i was BROKEN. wtf. i swear. anyway, so i start walking on it, go to six flags and for some reason all of the upside down coasters arent working... interesting... so my foot still hurts. i go to the foot dr... guess what? ITS BROKEN! it WAS broken before and the hospital misread the xray. gee thanks. so i get casted and im out of work for a few weeks. and then... this EXCRUTIATING pain in my leg... i call the dr every day and the secretary tells me that i need to take my pain meds and this is normal... so normal that i had a 102 fever and was throwing up? i dont think so. i make them see me. he cuts off my cast. guess what? BLOOD clots in my leg. great. so? im out again. dr says if i have pain in my chest go to the er. im asthmatic... i always have pain. but whatever. i showered. shaved. did my toes and went to the ER the next day. guess what? clots in my lungs. fanfreakintastic. and then? im in the hospital for a few days. then im home bc my dr went on vacay and couldnt sign me back to work. and then these headaches, omg. so i call the dr and he has me come in to make sure there are no bleeds in my brain. no bleeds... but he saw the tumor. like my life wasnt sucking enough, lets add this to the mix! it's bad enough i had been cheating death the past 3 months... so i do the MRI... tumor the size of a QUARTER on my pituitary. so i make an appointment for a neurologist. he says i have time to make all these appointments for a surgeon and all these tests. well, i get a call THAT NIGHT that i have to see the surgeon the next day bc its too close to my optic nerve. (had those coasters been working... id have gone blind) so i meet with the surgeon and he says theres a blood test and maybe i dont need to have surgery... nope. not me. I NEED EMERGENCY SURGERY. he was going to do a crainiotomy and shave my head... i just had my hair done. and i was bawling. great. lovely. made my day. AND? he tells me about cushings, that i have it and it makes sooooo much sense! the mood swings, the crazy periods i would or wouldn't get, the weight gain, the buffalo hump... *sigh* so, emergency surgery. i wake up fine, go back to sleep wake up... blind in my right eye. great. so i was put basically on sucide watch bc of how my life was going. but whatever. just another bump in the road. i liked that my surgeon wanted someone to stay with me every day :) my sister and i got really close and the nurses at sacred heart... phenomenal. anyway, we didnt know much about cushings, but i lost 35 lbs in the hospital ;) i was bringin sexy back! i went home, had visiting nurses bc i could barely move (but my foot healed) and they were nice. i started physical therapy... but no one knew how i was really feeling. i woke up some days thinking i couldnt see bc i opened my blind eye. i wouldnt know where i was. what things were, how things worked. i wasnt sleeping. i was itching. i was hot. i was cold. i was sad. i was angry. my friends had abandoned me i felt so alone... wtf was going on!? and then... id swell randomly. the weight came back. i wouldnt be able to lift my legs because they would be so big and sore. i had pain in my head all the time. the drugs didnt always work. i had the dilauded itch. my mom had to bathe me. i couldnt do much on my own. but i persisted. i worked my ass off at physical therapy. the people at my job were mad that i was getting my nails done, or going to see a movie or going to the beach. for every good day i had... i had 3 bad days. my REAL friends were trying to help me feel normal. i didnt have money, but people were helping me. and i hate asking for help, but i did. life was pretty sucktastic, but i found alot of blessings. i went to the beach for my birthday. my mom and i met danny gokey (american idol) my friend set me up to meet hanson... my obsession and they even had a concert in my town! i figured out who mattered and who didnt, what mattered and what didnt. i went back to work in january, figuring i was ok, especially because my surgeon said he got all the tumor. my endo was an ass. he didnt know anything about cushings, wouldnt listen when i said i was allergic to the generic form of sinthroid, funny tho... because as soon as i went to the name brand, my rash left! hmph. anyway, my surgeon wanted gamma knife. but my neuroopthamologist said NO. so we went to thomas jefferson for a second opinion. guess who still has MOST of her tumor! 1st surgeon left most of it in, and it was growing. not like the stress of my job was helping... god forbid i have a support system. anyway, so we still have a tumor. and were getting sicker and if we dont kick this thing, im dead by 30. (im 27). ok, so lets do this! april 12 i went for a transphenoidal to get rid of the rest of it... but noooooo. he got most of it, but its attached to my carotid and in my cavernus sinus which means if he pulls it wrong... i lose all facial movement. so now were hoping that it falls away and in july/august well do gamma knife to kill it and get rid of it so i can finally start to heal. i swear... its like one thing after another. i didnt heal right from that either. these dizzy spells... forgetting things, my temper, the crying, the feeling of being a burden on everyone around me... it sucks. i hate it. i hate it. i hate it. but godforbid i complain. i do have a lot of blessings. i do. i have an amazing family. the friends i have are amazing, "team nicci" or "nicci's army". my boyfriend? forget it. he's the best. i dont think i could be getting through this right now without him, my family or my friends. do i wish things were different? that i could see? that i was already healed? sure. i was already supposed to be back at work! i love what i do, but i cant go back. i cant drive. some days i can barely move. some days i fall into the wall. i have a few good hours and then i collapse, but some people only want to see the good. they dont want to see that im struggling every day to smile and get through the pain. no one knows what its like. well i mean, some people do. but im tired of being judged because im smiling and laughing. its not always real people. i fake it. its hard, but i do it. i cant wait until im finally better. i look at pictures... this isnt me. the smile and the light in my eyes, thats me. this body? these emotions? not me. im a strong, independent, positive individual who had a shitstorm thrown at her. but this is me. surviving. i dont know any other way than to push through this. and that's what ill continue to do.

1 comment:

  1. Well, my dear…I can't tell you how proud I am of you…your courage, your spirit, your integrity and loyalty. I am so grateful to be a part of your life. You are right about your family. THEY ARE THE BEST! And as for the pettiness you endured at work; well chalk it up to the small mindedness some people are cursed with.
    As for you…you're doing it ALL right! You are a great inspiration to me. Thank you for sharing your deepest thoughts and fears as well as your soaring joy!
    I love you!
    Love and Light, Lori