ever say to yourself... that dog has got the life! they just lay around... sleeping... cuddling... sleeping... peeing... sleeping... eating... sleeping... sleeping... sleeping....
ive said that.
ive wished for that
and now?
i have that.
im not sure how i feel about that. i sleep. alot. alot alot. and i can just sleep for days and days and days... and its like, if i wake up im still tired. i can be awake for 4/5 hours and then sleep soundly at night. and wake up and i can still sleep the day away... *sigh*
so is a dogs life really all its cracked up to be?
Monday, April 23, 2012
Sunday, April 22, 2012
day 22... its gettin hot in here... or is it me?
its definately me.
its always me.
haha
and i dont mean because i look so damn good either. its maybe... 46 degrees outside. the windows are open. im wearing shorts and a t-shirt... and whoooooooooooosh hellooooooooo hot flash! my hair just curled because i sweat so bad!
its so gross. my face turns multiple shades of red. sometimes i dont sweat. i just get pink. then red. then pink. then normal. but holy cannoli batman! i cant take it anymore! some days its not so bad. some days i have none. and its great. and other days... they come on every hour or more. it sucks.
i keep a battery operated fan in my car so i dont freeze everyone out when were on long trips.
some people think im strange, but, whatever.
and i keep bottles of water on me, at all times. the people at the theatre let me bring them in now because they know me and know that i NEED water. i MUST stay hydrated or ill get sicker. thanks cushings. i guess thats kind of a bonus because then i dont have to buy water there ;)
cushings= menopause. no, not for everyone. only for some. i think its because our pituitarys are shot. and i think it depends on the type of cushings you have. whether it be the disease, the syndrome, cyclical, etc etc.
i feel bad for picking on my mom for what she was going through when she went through 'the change'. it is not a fun change, no no... aside from not getting my monthly visitor. i do love that. but ive been loving that since 2009... when it started getting really irregular. it used to make me so sick id miss school (high school AND college) one time it made me so sick i missed work at CYS and dbag had to call me out bc i couldnt stop puking. that was a wonderful day... but ya know, my gyno said, oh it's normal.. you're on birth control. IT WASNT FUCKING NORMAL. i dont know why no one ever wanted to listen to me.
and the boobs. i love my boobs. i do. but... it'd be nice if they were a little more... symmetrical? is that the word? itd be nice if they were more the same size. yes, i know. every girl has one a little bigger than the other... but a full cup size? really? ive got a DD and a DDD. awesome. we pointed that out to the drs too... but they just said it was normal. or the other one would grow. it wasnt always this bad. i used to be able to wear those camis with the shelf bras but... not now. that was before i got sick. before i got cushie and got fat. and dont tell me im not. no wait, yes. tell me im not. i just wont believe you lol.
hot damn. i need an ice pack.
and now theyre saying its going to snow tomorrow... im thinking shorts and a tank top!
its always me.
haha
and i dont mean because i look so damn good either. its maybe... 46 degrees outside. the windows are open. im wearing shorts and a t-shirt... and whoooooooooooosh hellooooooooo hot flash! my hair just curled because i sweat so bad!
its so gross. my face turns multiple shades of red. sometimes i dont sweat. i just get pink. then red. then pink. then normal. but holy cannoli batman! i cant take it anymore! some days its not so bad. some days i have none. and its great. and other days... they come on every hour or more. it sucks.
i keep a battery operated fan in my car so i dont freeze everyone out when were on long trips.
some people think im strange, but, whatever.
and i keep bottles of water on me, at all times. the people at the theatre let me bring them in now because they know me and know that i NEED water. i MUST stay hydrated or ill get sicker. thanks cushings. i guess thats kind of a bonus because then i dont have to buy water there ;)
cushings= menopause. no, not for everyone. only for some. i think its because our pituitarys are shot. and i think it depends on the type of cushings you have. whether it be the disease, the syndrome, cyclical, etc etc.
i feel bad for picking on my mom for what she was going through when she went through 'the change'. it is not a fun change, no no... aside from not getting my monthly visitor. i do love that. but ive been loving that since 2009... when it started getting really irregular. it used to make me so sick id miss school (high school AND college) one time it made me so sick i missed work at CYS and dbag had to call me out bc i couldnt stop puking. that was a wonderful day... but ya know, my gyno said, oh it's normal.. you're on birth control. IT WASNT FUCKING NORMAL. i dont know why no one ever wanted to listen to me.
and the boobs. i love my boobs. i do. but... it'd be nice if they were a little more... symmetrical? is that the word? itd be nice if they were more the same size. yes, i know. every girl has one a little bigger than the other... but a full cup size? really? ive got a DD and a DDD. awesome. we pointed that out to the drs too... but they just said it was normal. or the other one would grow. it wasnt always this bad. i used to be able to wear those camis with the shelf bras but... not now. that was before i got sick. before i got cushie and got fat. and dont tell me im not. no wait, yes. tell me im not. i just wont believe you lol.
hot damn. i need an ice pack.
and now theyre saying its going to snow tomorrow... im thinking shorts and a tank top!
Saturday, April 21, 2012
day 21... must love... doctors?
some people say they don't know how i do it... go to the doctors so much.
well, i don't now, but at the beginning, hell, for most of this journey, i was going to one a week, some days id have 3-4 a DAY, let alone in a week. most ever in a day? 7. in philly. it was kinda fun though. met a reeeeeaaaaaaallllllllllyyyyy sexy cardiovascular guy. he was yummy. and he had jokes. and he said hed visit me in the hospital. i didnt believe him. but... there he was. in jeans. in my hospital room. on his day off. because he wanted to check on me...
anyway... i could have a hatred for doctors, seeing how no one wanted to listen to me. i was told i was fat. or it was all in my head. or i was fat AND crazy. but... as we now know, that wasn't the case. finally someone listened, it took a broken foot and some hardcore blood clotting for someone to listen, but hey, at least someone listened, right?
i loved my internist. id use names but, idk if hed get in trouble. so anyway, he was fantastic. he and his PA were always researching cushings, drs, medications, treatments, anything and everything they could to help me. when i was having a meltdown, i could call their office and be seen. one of them would sit with me and talk with me and help me. they were wonderful.
my first neurologist, he was alright. i only saw him once. and then he sent me off right away to my first surgeon. im sure he didnt know what a douchebag he would be. we sure as hell didnt.
we liked the first surgeon. we TRUSTED the first surgeon. we hung on his every word. we didnt know any better. he said right away. he said emergency. he siad id go blind if we waited. so ok. we did it. we went for it. how were we supposed to know he was going to do it wrong? he said going blind was a risk if i DIDNT have the surgery, not a risk of the surgery itself!!! we listened to him... and he screwed us.
we listened to him when he sent us to his brother in law as an endocrinologist. his brother in law who told me i didnt have cushings. his brother in law who said i needed to stop eating. his brother in law who told me that there was no way i had cushings and my cortisol levels didnt make sense to him. his brother in law who was a fucking piece of shit and i hope he gets run over by a fucking elephant!!!
and then this first surgeon said i needed radiation. so i went to my eye specialist. oh, hes wonderful. the first surgeon hooked me up with him since he fucking made me blind. and this specialist is a godsend. top 10 in the country. anyway, he said no. no way. no how. he said i needed a second opinion. so he sent me to philly. he sent me to thomas jefferson. and i adored my second surgeon. he was wonderful. he IS wonderful. his nurses are wonderful. he took the time to get to know me, my family, everything. became a part of my life. which i think is important. and then i needed a new endocrinologist. so he recommended one.
and then i told my internist i needed a new endocrinologist. and he recommended one. and he hadnt spoken to my new surgeon, but they recommended the same one. done. awesome
and he is. my endo is freakin fabulous! i love him. he laughs with us. eases our minds, and not just about endo stuff, about all stuff. stomach stuff, neuro stuff, psych stuff, cancer stuff, all stuff. and he's awesome. and he gets back to you.
and then i had to get a new internist. thanks medical assistance. i had to leave the dr who saved my life. freaking awesome. did that near kill me? you betcha. but he recommended a dr for me. and i like my new dr. hes good. hes recommended. but i do miss my other guy. he was like family :(
my hematologist rocks. he calls me back himself. and he fights my insurance company when they dont want to cover things. "this medication will save her life. do you want her death on your head? i didnt think so" love him :)
my otolaryngologist rocks too. i met him because of my second surgery. he takes good care of me. love my sinus rinse samples- that shits expensive! and he laughs. and reads my charts. and keeps up to date with me. says im the poster child for transphenoidal sinus surgery.
i have a new neurologist and he's freakin sweet. he talks fast and has an accent, but that's ok, because he tells you that and then tells you to tell him to slow down. he asks questions. he takes notes. he laughs with you. he did some test to me and since it made me laugh, he did it to rae too. which made her laugh. i made him drop his pen. it was a good trip. and he said hell run whatever tests i want to ease my anxiety.
and then theres my therapist. i love her. she is amazing. and i wouldnt want to have my head shrunk by anyone else. ive seen other shrinks before, but ive never felt as comfortable with anyone as i do with her. hell, some days i spend most of our visit in her bathroom, and thats ok. i can text her while im in there if need be. maybe thats gross to some, but... we just have that kind of relationship.
thats what i like. all my doctors talk. they all read my charts. they keep in touch with each other. they know all about whats going on with me and they fill each other in. they keep ME in the loop. they genuinely care. when i had my surgery, they called my house. they called my parents to check on me, they called to check on my parents... that means something. that says something. where are you going to find care like that?
i make friends wherever i go, it's just what i do. theres a joke, wheres your entourage? because i always have a ton of people with me. my first surgery- i knew all the nurses. one of them would bring me vegetables from her garden. the dietary guy would leave snacks for my friends in the fridge on my floor. he also brought his pastor to pray with me the day of my surgery AND the day of his daughters wedding, came in his tux so i could see him. i had a nurse bring me in pictures of her daughters because my sister and i reminded her of them.
my second surgery i had nurse dan who was constantly making jokes with me. my doctors would laugh with me.
my old blood lab... me and those girls were BONDED. and even the lab i go to now, its, hey nicole. they know who i am. its all good. i do miss my kelkel. we keep in touch though. and she loves my family. and they love her.
THAT is how i do it. i make sure to LOVE who i see. who i HAVE to see. if im going to be in a longterm relationship with someone, i want to at least like them :)
so thats what i do. i bond with them. find common ground. cross boundaries. i probably shouldn't know my drs backgrounds or their personal lives or have their cellphone numbers, but i do. and i think that's ok...
maybe that's one of the things i like most about myself, what i liked about me as a social worker. i didnt mind crossing boundaries. people needed to know that i cared. that i do care. and that's ok.
love does conquer all you know. ill never stop believing that. never
well, i don't now, but at the beginning, hell, for most of this journey, i was going to one a week, some days id have 3-4 a DAY, let alone in a week. most ever in a day? 7. in philly. it was kinda fun though. met a reeeeeaaaaaaallllllllllyyyyy sexy cardiovascular guy. he was yummy. and he had jokes. and he said hed visit me in the hospital. i didnt believe him. but... there he was. in jeans. in my hospital room. on his day off. because he wanted to check on me...
anyway... i could have a hatred for doctors, seeing how no one wanted to listen to me. i was told i was fat. or it was all in my head. or i was fat AND crazy. but... as we now know, that wasn't the case. finally someone listened, it took a broken foot and some hardcore blood clotting for someone to listen, but hey, at least someone listened, right?
i loved my internist. id use names but, idk if hed get in trouble. so anyway, he was fantastic. he and his PA were always researching cushings, drs, medications, treatments, anything and everything they could to help me. when i was having a meltdown, i could call their office and be seen. one of them would sit with me and talk with me and help me. they were wonderful.
my first neurologist, he was alright. i only saw him once. and then he sent me off right away to my first surgeon. im sure he didnt know what a douchebag he would be. we sure as hell didnt.
we liked the first surgeon. we TRUSTED the first surgeon. we hung on his every word. we didnt know any better. he said right away. he said emergency. he siad id go blind if we waited. so ok. we did it. we went for it. how were we supposed to know he was going to do it wrong? he said going blind was a risk if i DIDNT have the surgery, not a risk of the surgery itself!!! we listened to him... and he screwed us.
we listened to him when he sent us to his brother in law as an endocrinologist. his brother in law who told me i didnt have cushings. his brother in law who said i needed to stop eating. his brother in law who told me that there was no way i had cushings and my cortisol levels didnt make sense to him. his brother in law who was a fucking piece of shit and i hope he gets run over by a fucking elephant!!!
and then this first surgeon said i needed radiation. so i went to my eye specialist. oh, hes wonderful. the first surgeon hooked me up with him since he fucking made me blind. and this specialist is a godsend. top 10 in the country. anyway, he said no. no way. no how. he said i needed a second opinion. so he sent me to philly. he sent me to thomas jefferson. and i adored my second surgeon. he was wonderful. he IS wonderful. his nurses are wonderful. he took the time to get to know me, my family, everything. became a part of my life. which i think is important. and then i needed a new endocrinologist. so he recommended one.
and then i told my internist i needed a new endocrinologist. and he recommended one. and he hadnt spoken to my new surgeon, but they recommended the same one. done. awesome
and he is. my endo is freakin fabulous! i love him. he laughs with us. eases our minds, and not just about endo stuff, about all stuff. stomach stuff, neuro stuff, psych stuff, cancer stuff, all stuff. and he's awesome. and he gets back to you.
and then i had to get a new internist. thanks medical assistance. i had to leave the dr who saved my life. freaking awesome. did that near kill me? you betcha. but he recommended a dr for me. and i like my new dr. hes good. hes recommended. but i do miss my other guy. he was like family :(
my hematologist rocks. he calls me back himself. and he fights my insurance company when they dont want to cover things. "this medication will save her life. do you want her death on your head? i didnt think so" love him :)
my otolaryngologist rocks too. i met him because of my second surgery. he takes good care of me. love my sinus rinse samples- that shits expensive! and he laughs. and reads my charts. and keeps up to date with me. says im the poster child for transphenoidal sinus surgery.
i have a new neurologist and he's freakin sweet. he talks fast and has an accent, but that's ok, because he tells you that and then tells you to tell him to slow down. he asks questions. he takes notes. he laughs with you. he did some test to me and since it made me laugh, he did it to rae too. which made her laugh. i made him drop his pen. it was a good trip. and he said hell run whatever tests i want to ease my anxiety.
and then theres my therapist. i love her. she is amazing. and i wouldnt want to have my head shrunk by anyone else. ive seen other shrinks before, but ive never felt as comfortable with anyone as i do with her. hell, some days i spend most of our visit in her bathroom, and thats ok. i can text her while im in there if need be. maybe thats gross to some, but... we just have that kind of relationship.
thats what i like. all my doctors talk. they all read my charts. they keep in touch with each other. they know all about whats going on with me and they fill each other in. they keep ME in the loop. they genuinely care. when i had my surgery, they called my house. they called my parents to check on me, they called to check on my parents... that means something. that says something. where are you going to find care like that?
i make friends wherever i go, it's just what i do. theres a joke, wheres your entourage? because i always have a ton of people with me. my first surgery- i knew all the nurses. one of them would bring me vegetables from her garden. the dietary guy would leave snacks for my friends in the fridge on my floor. he also brought his pastor to pray with me the day of my surgery AND the day of his daughters wedding, came in his tux so i could see him. i had a nurse bring me in pictures of her daughters because my sister and i reminded her of them.
my second surgery i had nurse dan who was constantly making jokes with me. my doctors would laugh with me.
my old blood lab... me and those girls were BONDED. and even the lab i go to now, its, hey nicole. they know who i am. its all good. i do miss my kelkel. we keep in touch though. and she loves my family. and they love her.
THAT is how i do it. i make sure to LOVE who i see. who i HAVE to see. if im going to be in a longterm relationship with someone, i want to at least like them :)
so thats what i do. i bond with them. find common ground. cross boundaries. i probably shouldn't know my drs backgrounds or their personal lives or have their cellphone numbers, but i do. and i think that's ok...
maybe that's one of the things i like most about myself, what i liked about me as a social worker. i didnt mind crossing boundaries. people needed to know that i cared. that i do care. and that's ok.
love does conquer all you know. ill never stop believing that. never
Friday, April 20, 2012
day 20... 4/20... let's all get high...
juuuuuuuuuuust kidding!!!
haha. but let's use todays challenge to talk about medications, shall we? and getting high, on life that is.
as needed:
dilauded- for pain
tylenol w/ codeen- for pain/headaches
ativan- before bed, as needed for anxiety
bentyl- stomach
zofran-stomach
pulmicort-sinus/chest
sinus rinse
nebulizer
cholestyramine- stomach
hyoscamine- stomach
occipital nerve block- injection into my brain once a month
am:
400mg ketocanazole
40mg protonix
50mg cozar
10 ml arixstra
125mcg synthroid
500mg calcium
1000 iu vitamin c
25 mg phrenegan
cranberry supplement
pm:
folic acid
500mg calcium
1000mg vitamin d
20mg doxepin
10mg zyrtec
400mg ketocanazole
25mg phrenegan
5mg melatonin
25mg topomax (which will be bumped up next week)
acididopholous
think im on enough?
i will be adding fosamax into the mix in a few weeks, once the topomax has had some time to kick in and we see if there are any side effects, and then i have to find some fish oil and flax seed oil to add in to my med mix... yay.
im like a walking pharmacy.
i print out this list and give it to the dr every time i go. it's so much easier than remembering it all. i also have it saved on my phone so i can just pull it up that way. its important, as a cush, to always have a copy of your med list with you, the drs wont always believe you. i also wear a medical id bracelet with 'cushings disease, factor 5 lieden' on one side, and the other ' risk of adrenal crisis. allergies: sulfa, latex, penicillin, levothyroxine'. my friend amanda got it for me, and i havent taken it off since i got it... except for my MRIs. i think im ordering one for my friend. hes not liking the fact that hes going to need one, so i suggested we get matching ones... kind of like best friend bracelets, cheesy i know but... i am all about the freaking cheese!!
so yeah. its important to keep a record of all your meds. i also carry around a list of all my drs and how to contact them. this way, everyone's in the know. it's easier that way. i have that list on my phone, too.
i think ive been on a gamut of different pain killers. i cant take vics- they make me hallucinate. i cant take percs they make me pukey. morphine works, but they wont prescribe that, and yet they prescribe dilauded which is 10xs stronger. i hate taking pain killers. hate it. i dont like the way they make me feel. dilauded always dopes me up and i end up having an out of body experience... its crazy. the only thing i like taking is the tylenol. it usually helps, except last night. the headache i had was KILLER! im thinking its because of my contact lens. i really need to get a new script but... i dont know if insurance covers it. maybe ill call today and see whats what.
so yeah. today is 4/20. and while some of my friends are getting lit or getting drunk... i am planning ways to get high on life. or id like to if i didnt feel like such garbage.
i felt so good yesterday. well, sort of. my heart felt good, well, good and sad. i went to that adoption and it was beautiful. i got to see my favorite family, watch one of my favorite old clients get adopted, saw some of my old coworkers, hung out around the courthouse, spend some time in juvenile probation... and yet... i just wanted to cry. hard. some happy tears yes but.... idk. did i miss it? did i miss my job? i do NOT miss the people i worked with, ok, a few people i miss, but those people i spend time with so... im not missing out. and im in touch with the foster families that i bonded with so i have that... i just... i dont know. maybe it's because i thought i KNEW what i was meant to be doing with my life and now... now i just have no clue.
janice came to the house yesterday, leilas house, to meet with our girl. and she didnt know how sick i was. and i told her. and she was like wow. and she said that she was meant to be there, with me, at that very moment. and that theres a reason im here. and i know that. im meant to be here, i just.. i dont know what that reason is. maybe its to keep others going. maybe its to encourage and to love and to keep making a difference. maybe its to write a book... alot of people have been suggesting the book thing to me...
i just feel like im starting to fall into a dark place, and this time its harder to crawl back out of it. i know its the cushings that's doing it, but, that doesnt make it any easier to crawl out of.
part of me thinks its because im so tired. and part of the reason im so tired is because the keto got bumped up so my body is trying to get used to it again, or used to the new dosage and the time of day im taking it.
i dont know. oh right. i was writing about being high on life.
i need to be reikied. seriously.
maybe ill play with the chakras.
do some meditation
buy a pendulum
id love to go out today, but i dont think driving alone is such a good idea at the moment. maybe i need to eat something. but my stomach is back to being on the fritz so im afraid to eat something. oh life... <3
haha. but let's use todays challenge to talk about medications, shall we? and getting high, on life that is.
as needed:
dilauded- for pain
tylenol w/ codeen- for pain/headaches
ativan- before bed, as needed for anxiety
bentyl- stomach
zofran-stomach
pulmicort-sinus/chest
sinus rinse
nebulizer
cholestyramine- stomach
hyoscamine- stomach
occipital nerve block- injection into my brain once a month
am:
400mg ketocanazole
40mg protonix
50mg cozar
10 ml arixstra
125mcg synthroid
500mg calcium
1000 iu vitamin c
25 mg phrenegan
cranberry supplement
pm:
folic acid
500mg calcium
1000mg vitamin d
20mg doxepin
10mg zyrtec
400mg ketocanazole
25mg phrenegan
5mg melatonin
25mg topomax (which will be bumped up next week)
acididopholous
think im on enough?
i will be adding fosamax into the mix in a few weeks, once the topomax has had some time to kick in and we see if there are any side effects, and then i have to find some fish oil and flax seed oil to add in to my med mix... yay.
im like a walking pharmacy.
i print out this list and give it to the dr every time i go. it's so much easier than remembering it all. i also have it saved on my phone so i can just pull it up that way. its important, as a cush, to always have a copy of your med list with you, the drs wont always believe you. i also wear a medical id bracelet with 'cushings disease, factor 5 lieden' on one side, and the other ' risk of adrenal crisis. allergies: sulfa, latex, penicillin, levothyroxine'. my friend amanda got it for me, and i havent taken it off since i got it... except for my MRIs. i think im ordering one for my friend. hes not liking the fact that hes going to need one, so i suggested we get matching ones... kind of like best friend bracelets, cheesy i know but... i am all about the freaking cheese!!
so yeah. its important to keep a record of all your meds. i also carry around a list of all my drs and how to contact them. this way, everyone's in the know. it's easier that way. i have that list on my phone, too.
i think ive been on a gamut of different pain killers. i cant take vics- they make me hallucinate. i cant take percs they make me pukey. morphine works, but they wont prescribe that, and yet they prescribe dilauded which is 10xs stronger. i hate taking pain killers. hate it. i dont like the way they make me feel. dilauded always dopes me up and i end up having an out of body experience... its crazy. the only thing i like taking is the tylenol. it usually helps, except last night. the headache i had was KILLER! im thinking its because of my contact lens. i really need to get a new script but... i dont know if insurance covers it. maybe ill call today and see whats what.
so yeah. today is 4/20. and while some of my friends are getting lit or getting drunk... i am planning ways to get high on life. or id like to if i didnt feel like such garbage.
i felt so good yesterday. well, sort of. my heart felt good, well, good and sad. i went to that adoption and it was beautiful. i got to see my favorite family, watch one of my favorite old clients get adopted, saw some of my old coworkers, hung out around the courthouse, spend some time in juvenile probation... and yet... i just wanted to cry. hard. some happy tears yes but.... idk. did i miss it? did i miss my job? i do NOT miss the people i worked with, ok, a few people i miss, but those people i spend time with so... im not missing out. and im in touch with the foster families that i bonded with so i have that... i just... i dont know. maybe it's because i thought i KNEW what i was meant to be doing with my life and now... now i just have no clue.
janice came to the house yesterday, leilas house, to meet with our girl. and she didnt know how sick i was. and i told her. and she was like wow. and she said that she was meant to be there, with me, at that very moment. and that theres a reason im here. and i know that. im meant to be here, i just.. i dont know what that reason is. maybe its to keep others going. maybe its to encourage and to love and to keep making a difference. maybe its to write a book... alot of people have been suggesting the book thing to me...
i just feel like im starting to fall into a dark place, and this time its harder to crawl back out of it. i know its the cushings that's doing it, but, that doesnt make it any easier to crawl out of.
part of me thinks its because im so tired. and part of the reason im so tired is because the keto got bumped up so my body is trying to get used to it again, or used to the new dosage and the time of day im taking it.
i dont know. oh right. i was writing about being high on life.
i need to be reikied. seriously.
maybe ill play with the chakras.
do some meditation
buy a pendulum
id love to go out today, but i dont think driving alone is such a good idea at the moment. maybe i need to eat something. but my stomach is back to being on the fritz so im afraid to eat something. oh life... <3
Thursday, April 19, 2012
day 19
i was going to write about how ive started to get used to being alone. and i have. i mean, id rather have an awesome social life, or spend time with my friends who seem to have forgotten that i exist....
or i could write about how im discovering that im the friend of convenience, that im only good enough for some people when THEY need something... or they need their egos boosted....
and how ive been so scared the past two weeks and felt so helpless and yet... no ones really asked if im ok... (and when i say no one, there have been 4) and people DO know that im going through something. a big something. and yet... silence.
and i could tell you how yesterday, i heard from people i didnt expect to hear from, which was a nice suprise, but the people i expected to hear from and wanted to hear from... i havent...
and i could tell you how it hurts my heart. and how i've pretty much stopped speaking to alot of people. and if they want to pursue our friendship, it's all them.
and i could tell you that once you get used to being alone, it's really not all bad.
i could go on and on and on about that... but i wont.
nope. today.... today is going to be a beautiful day. it's going to be a day full of sunshine and smiles and happy tears.
today feels like a wonderful day for adoption!
i worked for 4 years as a social worker, and today, one of my absolute favorite kids is being adopted by her foster home. her absolutely incredible foster family has kept in touch with me when i got sick, and all the year/months after. i was invited to the adoption today, so how could i say no?
this family welcomed me with open arms as i started coming to their house. the love they shared with one another was beautiful. just walking into their home you felt loved... it was like walking into my own home.
sure, i probably crossed the boundaries. i used their bathroom. i played outside with the kids. i ate dinner there. i went to her husbands funeral, and then to their house after... but whatever. i think social workers SHOULD care. i think we make a bigger difference when we do.
i havent been able to return to work, dont know if i ever will again, but they have kept tabs on me. made me feel like i mattered. still invite me to things for the kids, and to dinner... even though the last time i was supposed to go to dinner i got so sick i couldnt go, and ended up in bed for 3 days. and you know what she said? dont worry. well always be here and we love you. get better.
its nice to not have people get mad at me when im too sick to do something or i need to cancel plans because i get sick. those type of people are few and far between.
but anyway... today is a beautiful day to watch a family come together :)
or i could write about how im discovering that im the friend of convenience, that im only good enough for some people when THEY need something... or they need their egos boosted....
and how ive been so scared the past two weeks and felt so helpless and yet... no ones really asked if im ok... (and when i say no one, there have been 4) and people DO know that im going through something. a big something. and yet... silence.
and i could tell you how yesterday, i heard from people i didnt expect to hear from, which was a nice suprise, but the people i expected to hear from and wanted to hear from... i havent...
and i could tell you how it hurts my heart. and how i've pretty much stopped speaking to alot of people. and if they want to pursue our friendship, it's all them.
and i could tell you that once you get used to being alone, it's really not all bad.
i could go on and on and on about that... but i wont.
nope. today.... today is going to be a beautiful day. it's going to be a day full of sunshine and smiles and happy tears.
today feels like a wonderful day for adoption!
i worked for 4 years as a social worker, and today, one of my absolute favorite kids is being adopted by her foster home. her absolutely incredible foster family has kept in touch with me when i got sick, and all the year/months after. i was invited to the adoption today, so how could i say no?
this family welcomed me with open arms as i started coming to their house. the love they shared with one another was beautiful. just walking into their home you felt loved... it was like walking into my own home.
sure, i probably crossed the boundaries. i used their bathroom. i played outside with the kids. i ate dinner there. i went to her husbands funeral, and then to their house after... but whatever. i think social workers SHOULD care. i think we make a bigger difference when we do.
i havent been able to return to work, dont know if i ever will again, but they have kept tabs on me. made me feel like i mattered. still invite me to things for the kids, and to dinner... even though the last time i was supposed to go to dinner i got so sick i couldnt go, and ended up in bed for 3 days. and you know what she said? dont worry. well always be here and we love you. get better.
its nice to not have people get mad at me when im too sick to do something or i need to cancel plans because i get sick. those type of people are few and far between.
but anyway... today is a beautiful day to watch a family come together :)
brain surgery-bringing people together since...
day 18 baybee.
dont ask me how im functioning right now, because i honestly have NO flippin clue. im so exhausted from yesterday, i legit slept 20 hours straight. and then random naps here and there. ill be going back to bed shortly.
ok, so i gave in to the fatigue and went to sleep. so let's attempt day 18 again, shall we?
bringing people together...
ok. so, before i got sick, my grandfather (moms dad) was really sick. he had been sick for quite some time. the drs never could figure out what was wrong. oh wait, the assholes did figure it out- gave him a diagnosis of esophogeal cancer FOUR HOURS before he died. they always said he was making it up, or it was all in his head or that he wasnt in pain where he said he was... fucking idiots. its because of how sick he got, that my mom became such a patient advocate and wouldnt take the doctors answers for either of us.
anyway. there had been a nice falling out in our family when he passed. my mom and her sister had always been super close. and then... things happened and they stopped talking. i developed the fuck you mindset. like seriously? and then i got sick. really sick.
so i did what any bitchy kid would do. sent this text message :so, i have a brain tumor and am having brain surgery in 2 days. you might want to call your sister.
sweet right? well... i honestly didnt think she even deserved to know, after the way she treated my mom. but turn the other cheek right? grandpa wouldnt want everyone at odds, hed want everyone to come together.
so my aunt asked me what was going on. and all my responses were, call your sister. text your sister. i wasnt going to say anymore. i didnt need her to be there for me. my mom needed her. my mom was falling apart in front of me, and that was not something i was prepared for. my mom was trying to be strong for me. my dad was trying to be strong for me. and all anyone really was, was scared. i think i held it together pretty well. i didnt break down until i hit the beach.
everybody needs somebody... and BAM. it took some time, but my being sick kind of forced them to rebuild their relationship...
you're welcome :)
as for the bitchy texts... i did that to more than one person...
i was tired of being treated like crap. and watching my friendships fall apart. why the hell do i have to be the one to hold them together? so i decided i didnt want to do that anymore.
as most of you know, i broke my foot and thats how they found the tumor. so i got a text from a friend saying, hows my favorite gimp?
my response? you mean the gimp with the brain tumor who needs emergency surgery? that gimp? oh she's fine...
that's all it took for that friendship to go back to the awesomeness that it once was. now it feels like it's kind of falling apart again but... shes married and pregnant and im still sick so... really... why make time? right? she has her own life. and that's fine. something im getting used to...
im really getting used to this being alone thing... hmm... i guess i see day 19...
dont ask me how im functioning right now, because i honestly have NO flippin clue. im so exhausted from yesterday, i legit slept 20 hours straight. and then random naps here and there. ill be going back to bed shortly.
ok, so i gave in to the fatigue and went to sleep. so let's attempt day 18 again, shall we?
bringing people together...
ok. so, before i got sick, my grandfather (moms dad) was really sick. he had been sick for quite some time. the drs never could figure out what was wrong. oh wait, the assholes did figure it out- gave him a diagnosis of esophogeal cancer FOUR HOURS before he died. they always said he was making it up, or it was all in his head or that he wasnt in pain where he said he was... fucking idiots. its because of how sick he got, that my mom became such a patient advocate and wouldnt take the doctors answers for either of us.
anyway. there had been a nice falling out in our family when he passed. my mom and her sister had always been super close. and then... things happened and they stopped talking. i developed the fuck you mindset. like seriously? and then i got sick. really sick.
so i did what any bitchy kid would do. sent this text message :so, i have a brain tumor and am having brain surgery in 2 days. you might want to call your sister.
sweet right? well... i honestly didnt think she even deserved to know, after the way she treated my mom. but turn the other cheek right? grandpa wouldnt want everyone at odds, hed want everyone to come together.
so my aunt asked me what was going on. and all my responses were, call your sister. text your sister. i wasnt going to say anymore. i didnt need her to be there for me. my mom needed her. my mom was falling apart in front of me, and that was not something i was prepared for. my mom was trying to be strong for me. my dad was trying to be strong for me. and all anyone really was, was scared. i think i held it together pretty well. i didnt break down until i hit the beach.
everybody needs somebody... and BAM. it took some time, but my being sick kind of forced them to rebuild their relationship...
you're welcome :)
as for the bitchy texts... i did that to more than one person...
i was tired of being treated like crap. and watching my friendships fall apart. why the hell do i have to be the one to hold them together? so i decided i didnt want to do that anymore.
as most of you know, i broke my foot and thats how they found the tumor. so i got a text from a friend saying, hows my favorite gimp?
my response? you mean the gimp with the brain tumor who needs emergency surgery? that gimp? oh she's fine...
that's all it took for that friendship to go back to the awesomeness that it once was. now it feels like it's kind of falling apart again but... shes married and pregnant and im still sick so... really... why make time? right? she has her own life. and that's fine. something im getting used to...
im really getting used to this being alone thing... hmm... i guess i see day 19...
Tuesday, April 17, 2012
challenge day 17... let's talk about sex baybee
sex and cushings? ready..... go!!
i hadn't planned on writing about this, but a couple of the girls in my support group were talking about libidos and sex drive, etc.. etc... etc.
so here's my experience.
mom, you may want to stop reading here.
i enjoy sex just as much as the next person... maybe a little more depending on the person im dating. im in no way a slut, my numbers are NOT high (not even double digits) and i wont spread my legs for anyone.
do i have stories that could make your headspin? of course
are there things i probably SHOULD remember and dont? yes
are there stories that i dont write about because my mom might faint? you betcha.
so anyway
alot of cushies have lack of sex drive, or lost their sex drive.
so as i sit and think back... i never really lost it. i mean, i used it as a coping skill, and eventually the guy i was dating, my libido wouldnt work for him. i dont chalk it up to cushings, i chalk it up to he was a piece of shit and i was unattracted to him so i couldnt get myself to WANT to sleep with him. but ya know, i was the dutiful girlfriend, so i banged him anyway.
and then there was the cushings/brain tumor diagnosis. and he became an even bigger piece of shit. so i left him. and then he went nuts blowing up my phone, my friends phones, to know how i was doing. seriously? fucking scumbag.
but im an ass and let him into my life again, sort of. i had a sense of normalcy, and i knew i could get what i wanted out of him. so we ended up hooking up a few times- while he had a girlfriend, nice right? and the day BEFORE she aborted his baby, we ended up hooking up. what a stand up guy... but i really didnt give a shit, which sounds terrible, but i didnt. if he didnt care, why should i? and it felt good to know my parts still worked!
but i left him again.
started dating someone new. i kind of became a serial dater. this guy was aight. nothin special to look at, nothin special, at all... really. no goals, no nothing. but he was a good kisser. and thought i was uh maze ing.
and i left that one too. he was just... NOT worth my time. at all.
and then there was chris. oh dear lord. why he had to contact me ill never know. they say you never forget your first love, right? yeah... i dated him when i was 15/16. and i was crazy about him... but he was fucking WEIRD. i cant stand boys who cry. ok, no thats not true. i think its sweet, but seriously, you SHOULD NOT be crying more than me. so i dumped him. he was tooooooooo in love with me. im 15 years old and hes talkin about marriage and babies... seriously? i dont know what i wanna have for dinner and you wanna marry me? talk about sending a girl running! PLUS i was 15, wtf? so i enjoyed the many boys of high school. and i never really spoke to him again. and then he found me on facebook. and i was excited. so we hung out a few times. he came to see me in the hospital after my 2nd surgery. the chemistry was on point. but the sex? oh my god, i was always excited for it to be OVER. he had this 'im the god of sex' complex and it took all i had to tell him, dude, you fucking suck. you dont know how to use your dick and its small as hell.
normally, size doesnt matter. and im a firm believer in that. but if you dont have the size, know how to use what you got, right ladies? but whatever, my parts worked.
one of the things i think i like about cushings, is that our skin and our bodies are so sensitive. i think my body reacts differently than everyone elses. the littlest touches send chills down my spine. or they did anyway.
typically, with cushies, our sex drive dies, we dont lubricate, or experience what we should.
and yeah. i probably can never give birth. but my friend linda said, a working uterus doesnt make a mom. love does. and i really liked that.
but anyway. douchey douche and i broke up. because hes a slimelord, and got mad at me bc i got denied disability. then hed yell at me that i was going to leave him when i got better and would get mad at me when i was hanging out with my dad.
turns out he was fucking his mother.
thank god i left that situation! smh. talk about gross... fucking psycho. AND he tried to withhold my medication, lets not forget that.
i had stopped sleeping with him LONG before we broke up. he just didnt do it for me. and every time he looked at me or went to touch me i wanted to throw up. RED FLAG!!! if you want to knock the person your dating out, every time they breathe... kind of not the best relationship to be in, haha.
so, yes. sex. love it. having it now? no. because im unlike alot of my friends- i wont open my legs up to just anyone, or just because i wanna get laid. seriously, if i feel the need that bad, i can just go buy a flipping vibrator. i dont want a disease. i dont want to be used. some may say its because im uncomfortable in my own skin, or with my body. but thats not true at all. i got naked for chris, before i started to look as good as i do now. so... yeah. hes a slimebug, but i felt comfortable enough in my own skin, so for that i thank him.
if/when i get into another relationship, eventually that line will be crossed. but i have to trust the person, and actually give a shit about them. i dont want to fake it (the relationship, not the orgasm, because, let's face it... we all fake it now and again... and im the queen ;) )
maybe cushings HAS caused me to not want to have sex, and that really doesnt bother me. it used to be that i couldnt go a day without it. hell, id drive 45 minutes to see my ex (while we were dating) just so i could get laid and then peace out. yeah- i learned how to shut myself off and make it unemotional. but i dont think i want to do that anymore. i KNOW i dont want to do that. it should be something beautiful and shared between people who care about one another, not just a hump and dump.
so... the way i see it... cushings killed my horomones, but maybe its a blessing in disguise that i CANT let myself fall into numbness and use sex as a coping skill.
it was sex and alcohol but... i cant drink anymore. and im not having sex so... blessing in disguise.
especially since with my last i needed that liquid courage to deal with him. and to sleep with him.
now this isnt meant to discourage the boys that if theyre not packing, sex wont be good.
and thats not to say that if you're not experienced, it wont be good.
sex should be treated as something special, and beautiful. and i really believe that LOVE is what makes it good. unless you're really drunk and just fucking around. thats good too.
but for me, now, there has to be more than just fucking around.
cushings changes things.
cushings changes you.
and i actually think it's been changing me for the better...
i hadn't planned on writing about this, but a couple of the girls in my support group were talking about libidos and sex drive, etc.. etc... etc.
so here's my experience.
mom, you may want to stop reading here.
i enjoy sex just as much as the next person... maybe a little more depending on the person im dating. im in no way a slut, my numbers are NOT high (not even double digits) and i wont spread my legs for anyone.
do i have stories that could make your headspin? of course
are there things i probably SHOULD remember and dont? yes
are there stories that i dont write about because my mom might faint? you betcha.
so anyway
alot of cushies have lack of sex drive, or lost their sex drive.
so as i sit and think back... i never really lost it. i mean, i used it as a coping skill, and eventually the guy i was dating, my libido wouldnt work for him. i dont chalk it up to cushings, i chalk it up to he was a piece of shit and i was unattracted to him so i couldnt get myself to WANT to sleep with him. but ya know, i was the dutiful girlfriend, so i banged him anyway.
and then there was the cushings/brain tumor diagnosis. and he became an even bigger piece of shit. so i left him. and then he went nuts blowing up my phone, my friends phones, to know how i was doing. seriously? fucking scumbag.
but im an ass and let him into my life again, sort of. i had a sense of normalcy, and i knew i could get what i wanted out of him. so we ended up hooking up a few times- while he had a girlfriend, nice right? and the day BEFORE she aborted his baby, we ended up hooking up. what a stand up guy... but i really didnt give a shit, which sounds terrible, but i didnt. if he didnt care, why should i? and it felt good to know my parts still worked!
but i left him again.
started dating someone new. i kind of became a serial dater. this guy was aight. nothin special to look at, nothin special, at all... really. no goals, no nothing. but he was a good kisser. and thought i was uh maze ing.
and i left that one too. he was just... NOT worth my time. at all.
and then there was chris. oh dear lord. why he had to contact me ill never know. they say you never forget your first love, right? yeah... i dated him when i was 15/16. and i was crazy about him... but he was fucking WEIRD. i cant stand boys who cry. ok, no thats not true. i think its sweet, but seriously, you SHOULD NOT be crying more than me. so i dumped him. he was tooooooooo in love with me. im 15 years old and hes talkin about marriage and babies... seriously? i dont know what i wanna have for dinner and you wanna marry me? talk about sending a girl running! PLUS i was 15, wtf? so i enjoyed the many boys of high school. and i never really spoke to him again. and then he found me on facebook. and i was excited. so we hung out a few times. he came to see me in the hospital after my 2nd surgery. the chemistry was on point. but the sex? oh my god, i was always excited for it to be OVER. he had this 'im the god of sex' complex and it took all i had to tell him, dude, you fucking suck. you dont know how to use your dick and its small as hell.
normally, size doesnt matter. and im a firm believer in that. but if you dont have the size, know how to use what you got, right ladies? but whatever, my parts worked.
one of the things i think i like about cushings, is that our skin and our bodies are so sensitive. i think my body reacts differently than everyone elses. the littlest touches send chills down my spine. or they did anyway.
typically, with cushies, our sex drive dies, we dont lubricate, or experience what we should.
and yeah. i probably can never give birth. but my friend linda said, a working uterus doesnt make a mom. love does. and i really liked that.
but anyway. douchey douche and i broke up. because hes a slimelord, and got mad at me bc i got denied disability. then hed yell at me that i was going to leave him when i got better and would get mad at me when i was hanging out with my dad.
turns out he was fucking his mother.
thank god i left that situation! smh. talk about gross... fucking psycho. AND he tried to withhold my medication, lets not forget that.
i had stopped sleeping with him LONG before we broke up. he just didnt do it for me. and every time he looked at me or went to touch me i wanted to throw up. RED FLAG!!! if you want to knock the person your dating out, every time they breathe... kind of not the best relationship to be in, haha.
so, yes. sex. love it. having it now? no. because im unlike alot of my friends- i wont open my legs up to just anyone, or just because i wanna get laid. seriously, if i feel the need that bad, i can just go buy a flipping vibrator. i dont want a disease. i dont want to be used. some may say its because im uncomfortable in my own skin, or with my body. but thats not true at all. i got naked for chris, before i started to look as good as i do now. so... yeah. hes a slimebug, but i felt comfortable enough in my own skin, so for that i thank him.
if/when i get into another relationship, eventually that line will be crossed. but i have to trust the person, and actually give a shit about them. i dont want to fake it (the relationship, not the orgasm, because, let's face it... we all fake it now and again... and im the queen ;) )
maybe cushings HAS caused me to not want to have sex, and that really doesnt bother me. it used to be that i couldnt go a day without it. hell, id drive 45 minutes to see my ex (while we were dating) just so i could get laid and then peace out. yeah- i learned how to shut myself off and make it unemotional. but i dont think i want to do that anymore. i KNOW i dont want to do that. it should be something beautiful and shared between people who care about one another, not just a hump and dump.
so... the way i see it... cushings killed my horomones, but maybe its a blessing in disguise that i CANT let myself fall into numbness and use sex as a coping skill.
it was sex and alcohol but... i cant drink anymore. and im not having sex so... blessing in disguise.
especially since with my last i needed that liquid courage to deal with him. and to sleep with him.
now this isnt meant to discourage the boys that if theyre not packing, sex wont be good.
and thats not to say that if you're not experienced, it wont be good.
sex should be treated as something special, and beautiful. and i really believe that LOVE is what makes it good. unless you're really drunk and just fucking around. thats good too.
but for me, now, there has to be more than just fucking around.
cushings changes things.
cushings changes you.
and i actually think it's been changing me for the better...
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