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Wednesday, September 25, 2013


and away we go!

i haven't blogged in quite some time. mostly because i've been feeling like crap. or because i haven't really wanted to. or then i did want to but my computer was fucking up so i had to send it away to the geek squad so i was computer-less for a few wethis eks. i've had so many thoughts running through my head and so many pains running through my body.  as i'm sitting here typing this, i'm wondering when this day is going to end, and it's only 2pm!

so let's see... what have i been up to... well, this year has seemed to have been the year of music. i've gone to a ton of concerts. in august i went to the dirt road diaries tour- headliner luke bryan, openers florida georgia line and thompson square. that was fun. but, as the concert progressed i found myself wondering when it was going to be over. it's not that it wasn't a good time, it just i don't know. i have a hard time enjoying things. and the next day i had to spend the day in bed because i was completely drained and in pain.
then there was kelly clarkson and maroon 5. the concert that i had been looking forward to all year. or, since i had bought the tickets. that was a blast and a half. i didn't find myself questioning when it was going to be over, but again, i ended up in bed all day because of the pain i was in.

i can't have a day of enjoyment without a day with pain following. i'm exhausted, sore, achey, brain foggy, annoyed... this disease fucking sucks.

what else... oh. world suicide prevention day came and went. and since i'm a suicide survivor, especially more recently, i decided to get a tattoo on my left wrist that says "you cannot be replaced". my left hand is the hand that i take my pills with and if i was going to kill myself i would overdose on medication, so it's kind of symbolic. it's also a reminder that no, i cannot be replaced and that this world needs me. this year, twloha, to write love on her arms, their theme for wspd was you cannot be replaced and that's what inspired the tattoo. i bought the t-shirt and the bracelet and the cards. i started sinking again though, having those thoughts that i was worthless and that the world would be better off without me. that i didn't matter. that i was just here, taking up space. so, i decided not to wait until october to get this tattoo, i decided i needed it now. i needed to inflict some sort of pain upon myself, or do something for myself to make me feel better. and it did make me feel a little better. A LITTLE. my tattoo artist and i talked about why i was getting the tattoo i got and he opened up to me a little bit and suggested some music for me to listen to. i really liked it once i listened to it. my mom saw me sinking. so we did some retail therapy, she got me out of the house, since i had become a hermit again. my friends had stopped coming around again and i started to feel lonlier.i know everyone has their own lives, but it takes 2 seconds to send a text message. and i'm not wrong in feeling this way. i'm entitled to my feelings and anyone who thinks otherwise can suck my nonexistant dick.

the lonlieness has started to set in again. the friend who i had been spending a lot of time with has fallen off the face of planet again, which is common for him. which i don't know how he can call me his best friend when i don't feel the same way. i feel like i'm just here when it's convenient for him and he treats me like garbage. and i'm sick of it. i go above and beyond and i'm done. i just don't see a point in me being there for people when they can be there for me one minute and then disappear the next and only be around when they wanna be. actions speak louder than words and i'm sick of being hurt. i don't need to have a lot of friends. hell, i DON"T have a lot of friends. i may have a shit ton of friends on my friends list on fb, but how many of them are REALLY my friends. let's be honest. how many of them do i really interact with. how many of them could i depend on if i really needed to? not that many. and that's fine. that's how it just seems like the friendcount is dwindling. it seems like people seem to think i'm better and that i don't need anyone and that's not the case at all. i DO need people and I"M NOT better. maybe it's because i don't complain. but what's the point in complaining? it doesn't do anyone any good. it just makes everything worse, at least that's how i see it. i mean, i have a few people that if i need to vent, i'll vent but carrying on and on and on about the same damn thing? yeah. no one wants to hear it. but what do i do? do i say? hey. i'm lonely. it'd be nice if someone came by the house and watched tv with me? or hey. i need to get out of the house. anyone wanna go to lunch or dinner? i mean, i guess i could do that. but i think i want to be reached out to. i don't want to do the reaching. and maybe that's selfish or maybe that's not the right thing, but that's how i feel. because i feel like no one cares anymore. and when i do reach out, i feel like i'm being ignored. or that i'm a problem. and it's not fair. this disease has taken so much from me as it is. it's like people don't want to be around me because i can't do what they can. i can't go dancing. i don't drink. i can't go hiking. i don't do much. and it's like people don't want to be around me. that's how i feel. last summer i was going out all the time, spending time with friends- friends who have disappeared completely now- because i was healthier and this summer my health has taken a turn for the worst. this year actually.

i had to deal with feeling like i was beneath people this past weekend. i always look forward to my monthly weekends away. but this past weekend, it was different. i felt alone. i felt like i was beneath the people i was surrounded by. not all of them. just a few. and it was awful. i ended up leaving the party, going up to my room and crying my eyes out for a good half an hour. we went to the ren faire and i felt alone there, too. something i've been looking forward to all year and i just felt alone. and that never happens, but it did. maybe i wasn't feeling well. or maybe it was the emotions from the night before. or maybe it was because there was so many of us. or maybe it was because we didn't stop and sit still and i was in so much pain. i don't know. but i did ok. i think we walked at least two miles that day. and sunday i didn't sleep all day. i mean, when i got home i slept. i slept a alot. and monday i was in a lot of pain and slept alot. like i said, one day of activity takes a whole lot out of me. but i was really sad when i left. it was kind of like i never even went away. because the feeling of lonelieness never really left. i had a good time, don't get me wrong. there was a lot of smiling and laughter but... it just wasn't... it just wasn't.

and let's bring it to tuesday. tuesday we took a trip to hershey to meet with the surgeon who plans on changing my life. the two pituitary (brain) surgeries i had, plus the radiation didn't work to cure my cushings disease. i'm still producing an overabundance of cortisol. so, what do we do? i was put on ketocanazole which is used to lower cortisol, which is working. BUT it's not a long term thing. it will kill my liver and the oral medication is going to be taken off of the market soon. so, what other option do we have? more surgery. your adrenal glands are responsible for pumping out cortisol, adrenaline, hormones, etc. so, what do we have to do? remove the adrenal glands. both of them. can you live without them? nope. so, i have to be put on replacement steroids for the rest of my life. and this sounds horrible, but not having them would make it so much easier to end my life if i get that low again. but i think it would take more than just missing my steroid dosage. anyway. i'll be put on replacement steroids and i'll be at risk of adrenal crisis/ adrenal insufficiency. i have to really watch weaning myself down to the right steroid dosage. if i get sick, i'll have to take extra steroids. i'll have to teach people how to inject me should i black out and go into AI and not be able to swallow the pills. yesterday i learned a lot about the surgery. he was really knowledgeable. he knew a lot about cushings, he's done a lot of BLA's. he studied under the guy who created the filter that's in my chest. he knows the surgeon who did my friends surgeries. his resident studied under my neurosurgeon. he really made me feel at ease and he liked that i knew my shit. i knew that i was going to have to have a good trip meeting him before i even went. i knew from making the appointment that he was going to be the right guy. everything's sweeter in hershey! i scheduled my surgery for december 6th. oh em gee. i don't know man. kinda crazy. i'm gonna have a whole new operating system. i'm gonna be going into 2014 as a brand new person. i'm really looking forward to not looking like this hideous creature that i've become...

hideous creature. are you hearing me right now? who am i? what happened to me? when did this become who i am? when did i become so dark? i really hate this disease. i really do. i can't wait to be rid of it. maybe then i'll feel sort of normal. maybe then i won't be so sad and angry. maybe then i won't feel so ugly. maybe then i won't feel so lonely. no, i'll probably still  feel lonely because honestly, if you're not around during my struggle, you sure as hell aren't going to be around when i'm better. #truth.

i'm so sick of feeling like this. i really am. i don't even know who i am anymore. i don't recognize who i see in the mirror. hell, i avoid the mirror because i don't like what i see looking back at me. she's gross. and you know what's nice? most people with this disease feel the exact same way that i do. that's what's nice about my support groups. they get it. they get me. they're going through it, or have gone through it. our journeys are different and yet they're the same. i just wish my cushie friends were closer so we could all be sick together, so it wouldn't feel so lonely. so we could all lay on the couch in pain together. we could cry together. watch tv together. take our meds together. lay on heating pads together. use ice packs together. just be cushified together. because THEY GET IT.

am i afraid of this surgery? yeah. it's a big deal. they're gonna be moving around all of my insides. it's a major surgery. i'm gonna be getting rid of the disease that's been killing me for years and years and years, recovery is gonna be  a bitch. it's gonna be months before i start to feel better and then years until i'm TRULY free of the beast. but will it be worth it? hells yes. will i be riding rollercoasters? going to the beach? going places on my own? yes yes and YES. it's going to be a wonderful feeling. and then, i can forget about everyone else and leave everyone in my dust and throw up my middle fingers and say DEUCES baby! why? because isn't that what most of y'all have done to me? so why can't i do it back? it's not like i'm doing it to the people who've actually been there for me. they're gonna be riding the glory train with me.

i have big plans for when i get better. i'm gonna go see dawn. maybe i'll see nicole. maybe i'll finally get to go on that vacation with christine and pete. who knows. but i'm gonna get better. and you all can fuck yourselves. :)