the problem with being me

maybe i should change the title to, the problem with being me. i did change it. the original title was: the problem with living with a chronic illness

once again this disease is kicking my ass. and kicking it hard. cushings, the gift that keeps on giving. 

i'd like to return to sender please. 

my anxiety was having a good time running rampant the past two weeks because i decided to read my own mri report and it said new finding, where it mentioned a meningioma, measuring 0.5cm x 0.7cm. and it said where it was. so of course, i'm going crazy now. a new tumor? fanfreakingtastic. just what i needed. and it wasn't on my pituitary. so i have this tumor, that's not cushing's related and no i get to freak out until my neurosurgeon appt on the 20th. (my mri was the 4th) so la di da. let's hold it all in. tell a couple people. have some more headaches. get sick to my stomach. but then... my friend convinced me to call my neurologist. he didn't know he was convincing me to do that. i kind of spazzed out on him and he calmed me down and i made the call. i brought my mri report to the neurologists office and met with the p.a. she confirmed that it was a tumor, told me it had nothing to do with my headaches, upped my migraine meds, and told me that these types of tumors were benign and was glad that i was going to see my neurosurgeon. so, she really didn't make me feel that much better. 

i decided to post it on facebook. i felt like i needed to get it off of my chest and tell someone and i didn't know how else to do it, so i figured if i posted it on facebook, it would ease my mind a little bit. and this way, my cushie friends would know, my other friends would know, the people who follow my medical journey who i don't even really talk to would know, my family who i don't talk to would know... that's what i like about facebook. i can reach a large audience without really talking to people. maybe that's horrible to say, but seriously? you all feel the same way. that's why you post shit. so people can know your business, or at least what you want them to know. i post pictures into albums on fb so i have them cataloged. 

i had quite the outpouring of love and support. that was to be expected, and maybe that's what i kind of wanted, too. i needed to hear that. needed to know people cared. which is kind of sad and pathetic but whatever. 

and then there was my little vacation that i was going on. i was looking forward to getting away, forgetting about everything, going to the beach... well... i was trying to look forward to it anyway. it's just so hard to care about anything anymore. so hard to enjoy things. these anxiety attacks come out of nowhere. or i'll get tired or i just have a hard time caring about things. i just have a blahze blah attitude about everything. so anyway. i packed everything. we packed the car up and i was superexcited to go. i really was. and then i got tired. so mom said she'd drive the first part. so i got her to the parkway. and i fell asleep. i soooo wanted to do the driving. i love that drive. this is MY trip. MY wildwood. MY shore. MY life. MY beach. MY thing, right? so why does it have to start sucking now? why is it already being taken away from me? WHY?! i could blame it on the weather. it was crappy out when we left. and it's not like my ankle is healed yet. but the closer we got to the shore, the sunnier it got. we switched driving at the first rest stop we saw. i felt better driving. felt a little more in control, a little happier. finally. this party was getting started. we got to the hotel and checked in. it  was nice that the owners remembered me from all my stays there. we unloaded, unpacked, changed and got excited. we went to dinner, had a killer rainstorm, saw my cousins and went for ice cream. we went back to the hotel and surprisingly enough, i slept. the next morning we woke up early because we had planned on going to the flag day ceremony at sunset beach but that didn't happen because it was pouring. so of course, im not gonna feel the greatest. we went to my favorite breakfast spot, the doowop, drove around wildwood, and i almost fell asleep while driving. fantastic. so i, of course, needed to rest. i took a 2 or 3 hour nap when we got back to the hotel. i really wish coffee didn't make my heart race now. this whole resting shit really fucking blows. so i woke up and i don't remember what we did. oh yeah. we went to the beach. and then we went to the boardwalk and walked a mile. got some polish water ice, which is my favorite thing in the world, got my superman hoodie, and then the sky turned black. and i mean BLACK. we hightailed it back to the car and then BAM a monsoon hit. we drove back to the hotel and ran, i hopped, back to our room and then ordered takeout from my favorite pizza place, romeos. so the next dayyy... we met my uncle for brunch then went hunting for something for my dad and then hit up the beach. or mom took a nap and then we hit the beach. i don't remember. but i slept on the beach. which is really all i had wanted to do. that's where i wanted to do my napping. but this damn disease makes me so sensitive to the sun and the heat that i can't stand to be in it for long periods of time, it really sucks. we were out there for 2 hours though. the only reason i woke up was because of the horrible pain that i was feeling on my leg. guess who was getting sunburned? this girl. so in we went. we had wanted to make use of the pool so many times, but it was infested with children, and lots of children so that didn't work. we went to a fancy dinner and then went to cool scoops which is the cutest malt shop and then we hit up sunset beach for an hour or so to watch the sky turn a pretty pink and then we headed back and i ended up crashing. notice how many times i crashed or needed sleep. i was tired alot. i needed alot of sleep. i always need sleep. i'm always tired. it's like i can't have a freaking life. whenever mom asked me what i wanted to do, i'd say i don't care. i mean, there was plenty that i wanted to do, but i just couldn't find it in me to WANT to do it. like i said earlier in my blog, it's hard to care about things. i mean, i'm not a cold hearted bitch or anything. this disease has taken the best of me and i'm struggling to reclaim it. every day is a struggle. every.freaking.day. 

so, my vacation, was rough. it wasn't MY wildwood anymore. not MY shore. not MY beach. it just wasn't... the same. i was flooded with all of these memories of spending hours upon hours lying on the beach, laughing, sleeping, tanning, running through the waves. laying pool side, walking the boardwalk beginning to end countless times, doing the superman ride over and over again, the coasters, drinking in different rooms, making everyone my signature margaritas, or amaretto sours... just living. all those memories, a time before i knew that there was something wrong with me. a time where i could be carefree and just go. when i could run and be free. when i had no setbacks. the only thing i'd cry about was a douchey boyfriend! hell, i even had memories come flooding back of him while i was down there. that was fun, let me tell you. but it was a time when i wasn't sick like this. i mean, i had cushings but it feels like the surgery made everything so much worse. i lost my sight. i lost weight, then gained it. i got more tired. had trouble walking. started falling more. needed people to take care of me, drive me places, depression set in, anxiety got to be 10xs worse, panic attacks, i lost friends and family, memory loss became greater, more frequent and more severe headaches, i had to move upstairs so it was easier for me to get around- closer to the bathroom, no more stairs, easier to be near my parents should i need them, my life was basically not my own anymore. who was this girl in the mirror? i sure as hell didn't know who the fuck i was looking at. some days, most days, i still don't. 

i don't go to my drs alone. i can't take the drive by myself, resulting in my mom having to either leave work early or go in late or take the day off. 

i have such bad anxiety about going places or doing things, when i'm about to go out, i'll catch myself sinking and i'll say to my mom, i don't wanna go. and when i'm out, i'll catch myself counting down to when it's gonna be over. i hate that. I FREAKING HATE IT. i don't deserve that. my friends don't deserve that. well, they don't know about it, well, they will now. i mean, i kinda freak out before i go, and then once i get there i'm fine and realize it was all for nothing. unless i'm going to the movies with btf. then, i'm fine. i never have anxiety about that. or if i'm going somewhere with him, well, that's really all we do so... i've gotten pretty good at talking myself out of things. i can find something wrong with any activity that is in the real world. you give me one and i can find a reason not to be out there. cushings has turned me into a hermit. 

i really am having a hard time with living life. not as hard a time as i was having. things are starting to get better. but i wasn't myself. not like i really know who that is anymore. but people noticed. i didn't know that they noticed, but they did. i guess that's a good thing? i sure as hell noticed. i hated who i was becoming. i'm starting to like who i am. i think. i'm either liking who i am, or i'm accepting who i am and then we're gonna work on the whole self love thing. i mean, if i have all these people who love and accept me, why am i having such a hard time with it? is it because i'm not getting better? is it because i'm scared? is it because i don't trust anyone?

i have a beautiful inner circle. a group of friends whom i wouldn't trade for anyone in the world. last night lissa took me to a concert. and it was glorious. did i almost talk myself out of it? you betcha. but as i was walking out the door i said to my mom, kyle's gonna be there and maybe jimmy and that'll make things easier. i don't know why i said that because all i wanted was coley and lissa time. maybe it's because if something were to happen they'd know how to take care of me? i don't know. the three of them always make me feel comfortable in my own skin. lissa is one of the most amazing people i've ever had the pleasure of knowing and i'm so blessed to have her in my life. if i hadn't gotten sick, i never would've met her. it's all because of hanson. no, seriously. i met her because i met hanson at the radio station where she works and we formed an incredible bond and i wouldn't change it for the world. kyle? he's just fantastic. i started talking to him because he works at the sherman and wanted to tell me about rhps and we just haven't stopped talking. he's been a rock for me and it's been wonderful. i have so much faith and trust in him, sometimes i feel like i can talk to him about things that i can't talk to anyone else about. and jimmy? he works at the sherman, too. he helped me at the hanson concert when my legs swelled up and i had trouble walking. he let me bring in a water bottle. and he calls me his diamond, because a diamond doesn't know it's a diamond, but that doesn't mean it doesn't shine. jimmy wasn't there last night, but nonetheless i had an amazing time. like i said, once i get there, my anxiety wears off. i'm so blessed to have lissa around. we laughed. we danced. we talked. turns out we have a lot more in common than i realized. 

but like i said, my inner circle seems to put up with me. i don't know how they haven't gotten sick of me being sick all the time, or cancelling plans. i'm sick. and so many other people have left. so many other friendships have fallen to the wayside. but i've got these people who refuse to give up on me and that... that speaks volumes. even in my darkest hours. i have a twinny, a bestie, a wifey and a btf- they just won't go away. even when i feel like they've disappeared, they just kind of show up. or when i start to feel down or if i have to cancel, they're really understanding, especially btf right about now. he was even trying to rearrange his work schedule to come to my neurosurgeon appt with me so i'd have a hand to hold. who does that? 

i just wish i wasn't so sick. i'm tired of letting people down. i'm tired of letting myself down. i'm tired of being tired. tired of being sick. tired of not knowing if and when i'm going to be cured. tired of avoiding mirrors. oh, did i fail to mention that? yeah. i don't look at them anymore. i avoid them at all costs. i can't look at them. i don't know who's looking back at me. i don't like what i see. when i walk past the mirror in the hallway, i avert my eyes. i have 3 mirrors in my room and i don't look in any of them. i'll check myself if i'm going out but, that's about it, and it's rare so... there's really no point in seeing what i look like. the only time i look at my face anymore is once a day for my daily cushings picture that i upload to the cushings symptoms tracker on my phone. that really sounds like me, doesn't it?  

some days are harder than others. i remember not too long after my radiation, when i had started my cushings meds, i was starting to have more good days than bad. when i could push myself and be alright, now i'm just wondering when those days are going to start happening. is it harder because of the deep depression that i had sunken into? is that why it's harder for me to claw my way back to the top? i just don't have an answer. my psychiatrist, therapist and my mom have all said that this is the most stable they've seen me in a long time. i guess that's a good thing. i mean, i guess i agree with them. i can't disagree with them. most days i feel alright, i just feel... blah. or i'll have alot of energy and nothing to do or nowhere to go with it. but they're mostly blah days. 

are you seeing the problems with being me yet? no? the list can go on. try cushings on for size. tell me how you'd enjoy it. not knowing if you're gonna live to see another day. having to take catnaps. feeling low energy. feeling like you're letting everyone down. having your mind race constantly. moving slower. not recognizing the person staring back at you in the mirror, or the thoughts that cross your mind, not caring about anything anymore. please tell me how much you like it. 

 being me kind of sucks. if i were you, i wouldn't want to be me. would you?

freaking out

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.