so. june 20th i go back to the neurosurgeon for my 6 month check-up, to go over my latest mri and for him to say, i see nothing. which means it'll be almost two whole years that this tumor has been gone. the tumor that pretty much destroyed my life. the tumor that took away my sight, my job, my body, my ability to do alot of things, my tumor that gave me cushings. my tumor that turned my sunshineyness into dark skies, that took away my tiara, that took away my friendships, that turned me into a hermit, that made me afraid of so many things...
and i am afraid. i'm afraid to go out places. i'm afraid to look in the mirror. i'm afraid to trust people. i'm afraid to look at people, to talk to people, to go to the doctors, to walk dogs, to spend time with people, to just be.
and i'm freaking out about june 20th. i keep getting these headaches. and they're headaches that linger for days and days. i'll be taking my painkillers every 4 hours. it's like my body knows when they're wearing off because the headache will come right back. my head hurts, my teeth hurt, my eyes hurt- yes, both of them. laying down doesn't help. the dark doesn't help. nothing seems to help, and that scares me. what if it grew back? what if it's growing back? it shouldn't be. i had TWO surgeries AND radiation. i should be done with this shit. i shouldn't have cushings anymore. i should be cured. i should be losing weight. i shouldn't be falling. i shouldn't be crying all the time. i shouldn't be anxious or afraid. i should be able to sleep like a normal person. i shouldn't be tired all the time. i should be a functioning member of society.
there's that damn anxiety again. it keeps me up at night. i fell asleep somewhere between 4-5 this morning. nice, right? i took my melatonin, had my reiki music playing and nada. i even took an ativan, but i took that at like 2, which could be why i feel so crappy today. i did have a burst of energy around 4 this afternoon so i took a shower, but that's gone now, so maybe i'll sleep tonight. my dr wants me to go for a sleep study, but we know why i can't fall asleep. it's called cushings. do your research. i don't want to be on anymore drugs. i don't want a sleeping pill. i don't. and i know that's what he'll rx me. and i can't do it. they're addictive. he had rx me ambien before and i slept for an hour and a half and then i was up with all sorts of energy.
i have full blown cushings. my salivarys came back nice and high, i know, i read the reports. i'm glad my endo sends them to me so i can see what's going on. he's good like that.
i think i'm also freaking out because i have to wait so long to see the guy in july. july is a long ways away. or, maybe it's not. it's a little over a month away. i just don't know what he's gonna suggest. surgery? more meds? more tests? aye aye aye. this disease is quite sucktastic. quite quite QUITE sucktastic and i just don't know anymore.
and what really sucks? i had an awesome day yesterday. i got my haircut, i felt pretty, i went to target, went to cvs and even went for froyo with my mom and today? nothin. i just want to curl up into a ball and take a sledgehammer to my head.
what.the.frig. so over this.
oh. annnnd i've been doing research on my disease. and other diseases, like nelson's syndrome, which i could get if i have a bla. i never used to do research because i didn't wanna know so i wouldn't freak out. ignorance is bliss, ya know? so much for that theory.
what to do, what to do... *sigh*
and i'm worried that one of my friends might have this. i want her to get tested. her dr only did bloodwork but... she needs more tests, she really does. the bloodwork almost always comes back normal. she needs a ufc. but... she probably won't listen to me. idk. i guess i diagnose everyone.
and i'm worried about my dawniekins. she's not doing so well. i just wish i could take this away from her and make her a taylor ham, egg and cheese sammich, serve her some starbucks cawfee and fix her.
:(
i wanna fix us all.
but since i can't, i'll just keep freaking out. because i don't know how NOT to.
Love you, baby girl. We just gotta keep on swimming. I'm still trying to find our magic wand to make us all better. XOXO
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