i lost my sight today

well, five years ago today.

5 years ago yesterday i went in for emergency brain surgery. a crainiotomy, to remove my pituitary tumor that was causing my cushing's disease that no one knew i had. all anyone knew was that i had this tumor, that was growing rapidly and was pressing up against my optic nerve and that if i didn't have it removed i would go blind.

funny story about how i didn't go blind before we even knew i had this tumor.

i was walking around with shitbrick (my term of endearment for my loving ex boyfriend whom, when we found out about my tumor told me, this is your problem, i'm out. oh, and when i had my blood clots in my lungs, told me he didn't care if i died in the hospital. i pick winners i tell ya!!) anyway, i was walking around with him at great adventure on flag day in 2010 because i had such an awesome job working for the county that we got that day off and he well, had no life and had that day off as well so we went to great adventure. and, i was walking around on a broken foot because lovely pocono medical center told me it WAS NOT broken. asshats. anyway, ALL OF THE UPSIDE DOWN ROLLER COASTERS WERE OUT OF COMMISSION THAT DAY! so, we we didn't know i had my brain tumor and i was told if i had gone upside down, i would have lost my sight because the tumor could have moved and pushed up hard against my optic nerve and BAM. blind girl.

back to today. i had my surgery and woke up fine. and then the next day, today, well, 5 years ago today, i couldn't see out of my right eye. there was no vision. the nurse didn't believe me, but it was black. more of a beige, but nothing. she did all sorts of tests and nothing. she called dr douche and he came to the hospital right away and sent me for an mri of my head which scared the shit out of my mom because i had JUST came out of surgery and was in icu and that was a NONO. so, my mom raced to the hospital and i told all of the nurses to not tell her about my vision loss because i wanted to tell her. i didn't want her to freak out. but she did. i handled it quite well. i though maybe i'd get it back. i never did. i remember i wouldn't let anyone visit me in the hospital because i just sank. and the headaches were awful. but, they did lots of testing and no one could figure out what happened. the doctor put me on suicide watch and put a bed in my room and i had to have someone stay with my 24/7. i didn't understand why. i wasn't suicidal. he felt really bad. i kinda was just like, i'm alive so... what's the big deal. i still have my other eye? am i allowed to drive? he said yes. so... at least i had that. i mean, it sucked, but, i was ALIVE. oh. and then i found out the guy who was promising to stay by my side while i was in the hospital was fucking someone else. thank you to the girl who decided to text me while i was recovering for that message. that made everything so much easier to deal with. that was a bitch move. you know who you are. but, we're friends now. not me and him, he's a douche. we both hate him. me and her. weird, i know but, whatever.

so. here i am.

oh. before i start that. i had gone to a neurologist  two years later and he said hmmm. and i said what, and he said there it is. there what it? that's where he severed your optic nerve. i can see the slice.

WHAT THE HOLY FUCK?! well, that's lovely. and not like anything can be done because my shitty lawyers took their sweet ass time with the malpractice suit and by the time i wanted to get new lawyers, it was too late. the statute of limitations was up. yay me. but, at least i was granted disability. for a multitude of things. that was fun.

so anyway. here i am. my mom wants me to talk about it. and i don't know what she wants me to talk about. so, i'm just gonna go...

it sucks not being able to see. i look at pictures of myself and i see my eyes looking two different ways and that bothers me. or how bout when someone points out to me that my eye is shifting. because that's something i always like to hear about it. yeah nicole. i can see that you're disabled. gee thanks. i know i look like a fucking moron. you don't need to point it the fuck out to me. that goes for all of you. i know i look different. i know that you can tell i have a headache when my eye shifts. you asking, do you have a headache? your eye is shifting. IS A FUCKING ASSHOLE THING TO DO! HOW BOUT I SAY, DID YOU EAT AT WENDY'S? YOU LOOK LIKE YOU GAINED FIVE POUNDS! do i do that to you? no, i do not. do i comment on how you raise your children? your relationships? do i make any comments about your physical appearances whatsoever? NO! SO WHY THE FUCK IS IT OK FOR YOU TO DO IT TO ME?!

and yes. i get it. my hair gets in front of my eye. do i know that? NO. if it's bothering you, TOO FUCKING BAD! I CAN'T SEE IT! if we're going to be taking a picture though, and my hair is in front of my eye, the kind thing to do would be to either 1. push my hair behind my glasses or 2. tell me but be fucking nice about it.

oh. and if we're going somewhere, walk on my left side. walk NEXT to me. NOT behind me. if you walk behind me, i won't know where you are and my anxiety will be going through the roof! i will be constantly looking to see where you are. and DO NOT WALK ON MY RIGHT SIDE BECAUSE I WILL HIT YOU. i talk with my hands. i have hit people before. it's not my fault if you get smacked. deal with it. if you feel the need to walk on my right side, link arms with me. my friends tend to walk on my right side and then they'll disappear on me. DO NOT DISAPPEAR ON ME. that is one of the worst things you can do to me. DO NOT ABANDON ME SOMEWHERE WHERE I DO NOT KNOW WHERE I AM.
1. i have short term memory loss and i will not know where i am
2. i have anxiety and i will freak out
3. i am like a small child and will feel lost

my douche bag ex boyfriend that i talked about in my blog before this one did this to me and we had and all out brawl.

i still walk into things. i have no depth perception and i think things are farther away than they are. or i'll think something is closer than it is and i'll go to grab something and i'll miss. that's why i don't pour drinks for people at parties or at restaurants. i can't reach across the table and pour. it has to be done for me. i can do it at home, no problem, because i can pick it up as close to my face as possible, but i feel like an ass doing that in public.

i'm still a pretty bad ass driver and i'm pretty good at parallel parking. maybe even better than i was when i could see.

i try not to let this get the best of me because, well, what good would it do?

the past three days have been rough. all these memories. my depression has been in overdrive. i do have a good friend who has been by my side letting me talk to him about everything and i'm really blessed because even though he doesn't get what i'm going through, i've been able to cry on his shoulder.

wow. i can't believe how many times i've cussed lol. i haven't cussed in three months. haha. oh well. Jesus still loves me. Guess i'll have to start over.

but there. now i've talked about it.

i just don't see what point there is to holding onto the anger about going blind would do me. does it suck? yeah. do i want my sight back? yeah. did i think that once i was baptized i'd be seeing again? you betcha. but, that didn't happen, now did it? no. so... there's the story morning glory.

be blessed.

and don't take your health for granted.

My story: UPDATED: 6.28.16

For those of you who don't know the story behind my getting sick...

I was never diagnosed with Cushings, or even thought that it could be an issue. No one ever suggested it to me, I never researched it. When I started the rapid weight gain, my first doctor told me that I was fat and I needed plastic surgery to correct the problem. When I asked her about my buffalo hump, she told me that I had that because I was fat.
I worked out like a crazy person, three hours a day. I lived off of salads and yogurt! I never thought this would be my life...

In April of 2010 I was starting to have blackouts. I've always struggled with migraines, but these were really bad. I was even forgetting who I was, where I was, how I got places, nothing was making sense. In May, I went to the emergency room because I started to black out while I was driving for work. I asked for a CT to be done on my head. The ER dr just gave me tylenol and told me to go home, that my headache was was just that, a headache and I was just stressed out. He told me to take the next day off of work to rest, so that's what I did. Maybe I was too stressed out from work, I mean, I was a county caseworker, I had a crappy boyfriend. Maybe I was just too stressed out and that's what was getting to me.
Bring me to the following week where I blacked out, fell down the inside steps at my house, went out the front door and went out the outside steps. How this happened, I still don't know, but that's what happened. My brother took me to the er and they said i had a bad sprain so I had to miss work. AGAIN. And of course the rumors were flying. The girls at work were saying that I was missing work because I wanted to spend time with my boyfriend, that, get this, he was going to take me to the beach ON A SLED and pull me around. ARE YOU FREAKING KIDDING ME? DO YOU NOT KNOW WHAT A DOUCHE HE WAS? I swear. I worked with some AWESOME people! So, resting I was. And then I was walking on it. But, I was walking funny. A couple of the girls at work convinced me to go back to the foot doctor, so I did. Guess who actually had a BROKEN foot? yeah. the hospital MISREAD the xray. Nice, right?
So, he casted me and told me to stay home for a few days. AGAIN. I was home AGAIN. They were really starting to love me at work. So, after being at work for a few weeks, I started to get charlie horses in my leg. I called the drs office and the receptionist told me that they were normal and to take my painkillers. Did she put me through to the nurse? No. She decided to take it upon herself to answer my questions. Well, a few days later, I had a fever and was throwing up so I DEMANDED to be seen. He saw me, actually had no idea I was even coming in and took my cast off. Did a pressure test and sent me across the street to have a dopplar done. Turns out, I had BLOOD CLOTS in my leg. So, the dr gave me some shots, taught my mom how to do it and then sent me home. Told us that if I had pain in my chest that I should go right to the emergency room. Well, I was an asthmatic. I ALWAYS had chest pain, so how would I know the difference?
I took advantage of having my cast off. I gave myself a pedicure, shaved my legs and then the next day, we went BACK to the emergency room, where... you'll never guess what! BLOOD CLOTS in my LUNGS! YAY ME! So, I was there for a week. Then, I was home for two because I still had a broken foot and my dr was on vacation and he couldn't clear me to go back to work. So, I FINALLY went back to work and the headaches were starting again. I called the pharmacy where my sister worked and her pharmacist told her to have me call my dr right away. (I was on coumadin and they wanted to make sure I wasn't bleeding in the brain) So, I called my Dr and he had me come in right away to do a catscan. Well, no brain bleed. But, I did have a tumor on my pituitary gland and brain atrophy. What a great day I was having. So, I went for an MRI to confirm what we already knew. My dr, my NEW dr (the one who discovered the blood clots, the brain tumor, the man who, in essence, SAVED MY LIFE, Dr. Degler) had put a call into the neurologists office and set me up with an appointment to see him in a week or so. I can't remember. What I DO remember is having a headache so bad that I had my parents take me to his office and FORCING him to see me. (It didn't hurt that his nurse was  my lifelong best friends mom) So, he saw me and do you know what he told me? That THE HOSPITAL MISREAD MY CATSCAN! The tumor had been there the entire time! He had no idea how they hadn't seen it and it had continued to grow! (now we're in July) He gave me a shot of tramadol and then gave me a list of tests that I needed to have done. He told me that I had plenty of time to have them all done.
Yeah... so much for that theory. 

He called me around 7 that night and told me that I had an appointment on Friday with the neurosurgeon because I couldn't wait. The tumor was pressing on my optic nerve and I was lucky that I hadn't gone blind yet.
*Funny story. As I was walking around on my misdiagnosed BROKEN foot, I had gone to six flags and ALL of the upside down roller coasters were not working.*

So, I met with the neurosurgeon and he told me that there was a blood test I could do to see which kind of tumor it was to see whether or not it had to be out within the next three days. I failed the test. So, I needed it out. I woke up fine. Then the next day, I had no vision in my right eye. (Later we would come to find out that he had nicked my optic nerve. ) I was in the hospital for 13 days. Shaved head. Blind. But making friends with all the nurses. Oh, I had had a crainiotomy. That's the way he decided to hack into me. (Because of what he did to me, he has since retired)

He sent me to his brother in law, the endocrinologist, who was worthless. He told me that there was no way I could have cushings. No one had cushings. And that I was just fat. I needed to stop eating. Gosh, I just love these doctors!

And then I come to find out that the tumor isn't gone! First, he told me that the MRI was completely clear, that he got it all and that it wasn't going to come back. But, I wanted a second opinion. We sought out a new neurosurgeon at Thomas Jefferson University Hospital in Philadelphia and found Dr.Moshel (who has since moved to a different practice). He was a godsend! He did a new MRI on me and found out that I still had a tumor, that the MRI that Dr. Daneshdoost (old guy) did still had a tumor on it and that this one had grown and wrapped around my carotid artery and down my sinus cavity. He was going to save me! He and Dr.Degler had directed me to Dr.Vengrove at LVPG Diabetes and Endocrinology and he was a godsend! He listened to me, he diagnosed me with cushings, he had no idea why no one didn't before. His entire staff was so kind and caring. I actually started to cry when I met him because I finally met someone who was listening to me. I finally had a team of doctors who were going to work together who were going to save me! So, I had my second surgery in April, a transphenoidal sinus surgery. He had to leave some of it in because if he didn't and pulled it the wrong way, I would have lost all facial movement. Our next step was Proton Lindic radiosurgery. Well, it killed my tumor, but didn't kill the Cushing's. I had to wait two years to see if it worked. Nope. So, That brings us to December 6,2013. The day I supposedly got my life back. I had a bilateral adrenalectomy. (had both of my adrenal glands removed) You can't live without your adrenal glands so now I'm living on replacement hydrocortisone and fludrocortisone. The weight started to fall off, but now I'm at a plateau. I still feel like garbage. Some days, I wonder if the surgery was worth it, even though, I know that it was. The Cushing's is gone. I'm praying that it stays gone. I don't say I'm cured, I just say that I'm in remission. One day there will be a better cure for Cushing's than destroying us. I can't work. Some days I can't even get out of bed. This disease is nasty. And now? Now I'm primary adrenal insufficiency, which is scary in itself. This disease could kill me, too. Some days I wonder why I was chosen to live this life, but if I keep sitting around and wondering why, I'll never live. So, I just have to keep pressing on. One day there will be a cure. I just hope that maybe my case was one that teaches the doctors something new, maybe helps them find something that can help them find that cure, or maybe help someone who is struggling with this disease better understand it and be able to get the answers that they need.

UPDATE:

So, it's november and if you've been keeping up with my blogs you know that i posted one about the day i lost my sight... well... guess whose sight has gotten a hellua lot worse?

in september, i had noticed that i needed to start taking my glasses off to use my phone. scratch that. BEFORE that even happened, i came out of the shower and almost screamed when i saw my face in the mirror. my bad eye, the blind one, the right one, was COMPLETELY SHIFTED TO THE RIGHT. LIKE ALL THE WAY. LIKE IT WASN'T MOVING. well, it did move when my mom told me to look to the left, but it was STUCK. i was completely freaked out. i was also experiencing severe eye pain. to the point where i was eating dilaudid and tylenol 3 like candy. it was bad. so i made an appointment to see my internist to see what he thought. he was no help. at all. he actuallly made me feel worse. i left there with a higher pain med rx and feeling defeated. i actually started to cry when i saw my other doctor. just... completely lost it.

ANYWAY

i went home feeling sorry for myself, and the pain meds didn't even work! so, i went home cried some more and then BAMO a few days later, i wasn't seeing anything. my GOOD eye completely dilated, my eyelid drooped 3/4 of the way down and i had to walk using my cane. my mom called my neuroopthalmologist and he had me come to philly right away. they ran some tests on me and i was admitted to the hospital to make sure i didn't have an aneurysm or a new brain tumor. exciting right? well, none of that BUT i DO have third cranial nerve palsy. what is that you ask? it's when your eye has a stroke and blood and oxygen can't get to it. tcnp is one of the worst ones to have because it affects all of the muscles that makes your eye look up, down, left, right and the eyelid. i am typing this with my eyelid taped up. it's the only way i could do it.

i can't see my lap top anymore so my mom got me this nifty tablet and her friend got me an ebay gift card so my aunt ordered me a case that stands up with a wireless keyboard. pretty fancy, huh? at least i can attempt to start writing again! this is killing my back though...

back to my story

so, i went back to my internist for the pain (ny sister drove me. i'm on driving restriction until this clears up... which we're hopeful it will...) and he put me on morphine which seems to be doing the trick. for the headaches at least. and the eye pain. i still have break through ones, so for those, i'm allowed to take my other stuff. basically, they need to legalize medical mary jane in PA. idk if it would help me, but i'm willing to try anything at this point!!

on this new journey, i did meet the awesomest new eye dr. he specializes in nerve palsys. he gives me new eye exercises to do every time i see him and he helps us keep the hope alive. if my palsy doesn't correct itself by next october, there are surgeries i can have to lift my eyelid and reposition the bad eye. so.. there's that.

  we even took a creepy halloween selfie because we were both dressed up at my appointment. seriously, how many doctors do you know that do that? i truly have been blessed with some awesome medical care!

so, i pretty much always look like i'm winking at you. my youngest nephew, he's 3, came over to the house and it was the first time they had seen me since all this had happened, he just kept on winking at me. it made me sad. it was cute, but it still made me a little sad at the same time. i really can't explain it.

i've been really sad a lot lately. i know i'm blessed. and people have been coming out of the woodwork to support me, flowers, birthday surprises, and it's been wonderful but ya know... it's like... when is the shitstorm gonna be over? when is it gonna finally be my turn to relax and not worry about my health and just say, ok. i'm ok. life is good. i am free. i can see again. no worries.

when? everything was going so well for me! it doesn't hurt that i have pretty much the WORST COLD EVER in the history of my life right now and i have to be super cautious that i don't go into adrenal crisis because i have a compromised immune system. damn you cushing's/adrenal insufficiency!! i just cannot win these past few months! at least i'm getting to spend more time talking to my best friend. and i have had some pretty good things happen to me. i do have a good life. it's just, i'd rather not be a sick person. i'd rather be healthy and working. and be complaining about my job instead of the fact that i'm losing my sight. or however you'd like to look at it.

i stayed home for the first  week. i let it take me over. but then i said, fuck this shit. i have a life to live. and then i slowly started going out and going to the store with my mom and my sister and got practice using my blind girl stick. restaurants were another feat altogether. i refused to go out to eat. i think my first time eating out was Halloween at my friend's wedding. i just kind of went for it. i was so nervous. eating was/is pretty difficult. i have no depth perception and well, i can't see what i'm doing.

i still trip over things. so if you're with me you NEED to tell me when there are things in my way or if there is a step. if you are the ONLY one with me, you need to stand on my left side and let me lock my arm through yours because i need to have a sight guided escort at all times when i'm out and about. because, well, duh. and don't walk too fast. i can't keep up. and if this is too difficult for you to comprehend or to assist with, then, we don't have to hang out. i already have friends who don't hang out with me because i don't have money and because i can't physically do what they do and i can't drive so... really... are they friends? that's a damn good question.

anyway. this tape is hurting my eye so i think this is about all the update i can muster. but, i think i did pretty good for my first time typing since the whole palsy thing and not being able to see this ghetto computer! (i can't wear my glasses because i can't see the screen with them on so everthing is kinda blurry but kinda not}

xoxo. livehard.lovestrong.never EVER lose hope!

UPDATE!!! 6/28/2016

hello my lovelies! so, would you like to know where i am now? almost a year has past and i am a completely different person! i never thought i would be where i am right at this very moment, but i am still alive. i am still breathing. and guess what? 

MY EYE IS OPEN!!!

It started happening on Christmas eve! merry christmas to us! it was beautiful! i was even able to wear makeup! it's just been getting better every week! 

i have had days where it would swell and close back up but, thanks to my amazing opthamologist and the girls that have been working with me for vision therapy, i have been making leaps and bounds and i am happy to say that I AM ALIVE AND I AM SEEING AGAIN!!

the picture on top of this one is what i look like as of right now :)  

this collage is my journey over the past 6 years and what you all have stuck by me with. what we all have been through together and what you all have been reading up on.

i know i havent been posting much... really nothing since i posted almost a year ago. im going to try and change that.

if you guys need me, hit me up on insta @colebear06 and ill try and guide you the best i can <3

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...

challenge day 11, again...

sometimes... i feel like i care too much

or like the fact that i care annoys some people

maybe im just uberemotional today. maybe its because everything has been building and building and building and its just ready to explode...

i really thought i was stronger than this, but im on the brink of tears.

i dont know why i take on what i do, because i probably shouldnt. but i cant help it. caring is in my nature.

its been a rough few years.

tomorrow marks 1 year post 2nd surgery, and im still not fixed. i did write out my anniversary cards for my surgeons, because that's what i do. they'll be surprised, well... maybe. dr moshel and dr rosen both think im a blast in a glass because i always try and find the good in everything and make everything a positive experience.

but its bittersweet. like... cant i be better now? couldnt that have been the cure? i was so convinced that was going to be it... the cure. and id finally be able to heal and get on the road to recovery, go back to work, etc...

but no... couldnt get the whole tumor because it had wrapped itself around the carotid artery. hence, my needing radiation last july. and that MAY have worked. who the hell knows. and they put me on medication, which lowered my cortisol but isnt working the way it was supposed to...

so yes. tomorrow is going to be bittersweet. i guess ive had alot on my mind. i think i overworked myself for today. today was my occipital nerve block- they injected a steroid and lidacane into my occipital nerve (in my brain) to decrease the swelling and the pain. it wasnt bad at all. ok, yeah it kinda hurt. but... whatever. i had it done. i guess i was expecting more from it? occipital neuraligia is what i was diagnosed with. it causes headaches, eye pain, swelling, etc.

but there are other tests they wanna run on me too. next week im having an EEG done, and then he wants to admit me for an overnight EEG. so that should be fun. i actually wont mind the time in the hospital, i kinda like it there. maybe that's weird, but, i guess its because ive spent so much time in them that i feel safer there. plus i like meeting new people and making friends with my nurses. he wants to see if im having seizures at night and idk what else hes testing me for. i dont really understanad the whole thing. but, it's a day to spend with my aunt so... at least thats a bonus.

and then there's the bone loss in my spine. were learning more about that on tuesday. not something im excited about. im sure it's cushings related... its ALLLLLLLLLLLLL cushings related. the dictation i got from my neurologist says blah blah cushings, blah blah cushings, cushings blah blah blah... etc etc cushings etc. so that's good.

im just siiiiiiiiiiiiiiiiick of being sick!

oh well.

im up and down. and my head hurts and ive been scared.

and my moms ok. but still, everything we dealt with was scary as hell.
its like we cant get a break

and my friends ok. which made me burst into tears.

i hope things start looking up. for everyone.

its hard being strong all the time...

and seeing the reality of life, of friendships... because you THINK you know someone and you THINK they care when in actuality, if it's not about them... you don't matter. and that's fine. because i do matter. and if they cant see it, bye bye. i dont need assholes in my life. at all. or people who like to make me feel bad, or who get off making others feel bad because theyre that insecure with themselves.

ill always be the one to give the shirt off my back if it would help someone, but... not everyone. not anymore. i need my shirt.

*after a while you just smile and hope is just a fairy tale*

feeling overwhelmed...

somedays... this disease makes me feel so completely overwhelmed... it's like, cushing's is so unheard of and so rare, that you'd think there wouldn't be anything on it... and then the more research i do... the more info i find and then im not sure if i should feel hopeful or hopeless? i mean... yay. we survive and there's a diagnosis... but the recovery... idk. maybe im annoyed bc i thought that i would be getting better! i didnt know that removing the tumor meant that NOW i would have cushings? i guess it starts with the tumor, and then once the tumor is removed it blows up then gets knocked down? im still confused. i try and wrap my head around it, and once i think ive got it figured out, i dont. it's kind of nervewracking to tell ya the truth...

and maybe it's unfair to the people in my life, because i want them to understand, but then again i dont. i wouldnt wish this on anyone. especially because of how painful it is and how hard it is to come to terms with. im in pain all the time. im an emotional rollercoaster. im irritable. i either dont want to be touched, or i need to be touched and held and cry. it's all... so confusing. sometimes i feel like im trapped in my own head and i cant get out... like it's a puzzle that's missing pieces...

maybe i need to get my puzzle tattoo with josh n george. well, who knows about josh. he's kinda up and down too... but we were gonna get it for autism, but i think it can relate to cushing's too... me and my crabcake... we are medical mysteries...

im glad i have my support system tho... thank goodness for facebook! some people think im crazy and i spend too much time on there, but that's where my cushing's support group is. that's where i have people who understand. and then i blog. and post pictures. and can keep up with family...

my family who is the absolute shiznit! i really don't think id be doing so well without them! they're hardcore there for me. it's awesome. i didn't think my sister and i would be as close as we are. anyone who knew us growing up knew we didn't get along, like at all. and now? i can't see having another best friend :) i can tell her anything and everything and we're there for each other. it's rather refreshing :)
and yesterday... totally got to see family i havent seen in 7 years... i had an anxiety attack the night before bc we hadnt seen them in so long and there was gonna be so many people but... it was amazing. and i had no attack and i didnt even take my anxiety pill! i forgot! it was GREAT! maybe it was because i was with MY family... i felt so at ease, so comfortable and so HAPPY. it's so hard to describe how great i felt... and we ate crap food ;) probably shouldnt have but... man oh man! pizza and wings and calamari and fries... so bad but so so good! it's back to healthy now.

speaking of healthy... starting tomorrow im cutting meat out of my diet, or at least im going to try to. my friend wants me to try a plant-based diet, a vegan diet... but im kind of afraid to throw my body into that kind of shock, so im going to try the vegetarian diet first. we bought hemp milk... its kinda funky but hopefully it helps.

hmmm... i guess that's all for now <3

some secrets ive found to help with this disease...

so, this disease sucks. you gain weight for no apparent reason (btwn 60-80lbs in like 2 months), you work out like a nut but that doesnt help, your hair thins, you lose your hair, you develop stria, you have fat pads, you look pregnant, your muscles start to deteriorate, your skin thins, you itch all the time from the cortisol, it's harder to do anything because you're so tired all the time, you become depressed, you have crazy mood swings, you feel like crap most of the time... and there are days that you hate yourself and want to end it all. and? you start to hate the way you look.

that was my big thing, well, still kind of is. some days i just look in the mirror and want to break it. i dont look like i used to. some days its really hard to push through, but i do. how? i dont know. some days i just cry and cry and cry, other days i force myself to laugh and smile. it sucks, but it's doable.

so right, beauty things.

Jergens Moisturizing Body lotion/ self tanner. It gives your skin a natural glow, without leaving orange streaks. Since we cushies cant be in the sun for too long, it's nice to not look so pale, plus it helps cover some of the stria.

Avons moisturizing lotion: for those who dont care about the tan. it's fabulous and calms the skin, unscented and doesn't leave a rash.

Triamcinolone cream. I got this from my dermatologist, it helps with the breakouts/rash while moisturizing. It also helps to relieve the itching.

Mary Kay has a timewise facial cleanser, moisturizer and day and night cream. Fabulous stuff. My skin feels incredible. Since our skin is so sensitive and delicate, it helps to keep me look refreshed.

HAIR LOSS: this is a big one. our hair thins and falls out, one of my biggest fears for after radiation was that I was going to lose it all. my mom bought me nioxin, it helps with hair growth, and it's working! so far so good.

dry scalp: from the radiation my scalp was dry and itchy. it drove me bonkers. i was afraid to touch my head bc i didnt want to risk pulling my hair out. so, im flipping through my moms womens world and it tells me to mash up two asprin and mix them into my shampoo... i havent itched since! and my scalp is alot calmer... who knew?!

the bump it: i know... i thought they were pretty lame too... but... i can't cut or dye my hair and it's not working for me... so i caved. bought the generic at the dollar store and it works! you couldn't even tell i had something on my head! i went to a friends wedding and actually FELT pretty, something i havent felt in months. it was a good feeling.

aloe juice- pour a shot of that into juice or soda or whatever you want... it helps with the itching!
painting. just something i started to do. it helps occupy my time, and i feel accomplished. im not too good, but im working on it. this whole having to relearn everything sucks.

when i say relearning i mean: walking, talking, focusing, writing, reading... it's hard... but im doing it.
i guess those are all my fun things for the day, hope it helps!