#after i was diagnosed with epilepsy my neurologist told me i shouldn’t just to be on the safe side

[aleksikesa]

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[beautifullychaoticworld-blog]

I might have a pituitary tumor and was just wondering what treatment looked like for you?

Were you diagnosed with it?

I was put on a medication called cabergoline (there are others but cabergoline works best), however it had really strong side effects which last for a long time (3 years for me) until I got adjusted to it. I take two halves of the pill twice a week so it brings my prolactin levels back to normal levels and shrinks the tumor, instead of getting surgery done.

I was put on an antidepressant Citalopram (helps with depression and anxiety) to go with the side effects of cabergoline which I stopped after a year or something (it actually helped to slow to down my racing and intrusive negative thoughts). I remember going to a counselor in the beginning (since a pituitary tumor is close to the brain it affects your mental health a bit but I didn't even expect I had a tumor close to the brain when I first went but it was found by my doctor soon after I started going to a counselor) and the counselor said I needed CBT (Cognitive Behavioral Therapy) or talk therapy which I never went on to try. The funny thing is that cabergoline side effects were making me manic and bipolar for a quite a bit, also highly energetic... I even remember hallucinating and having delusions in the beginning of drinking cabergoline... and I had seizures as if I have epilepsy... 

I get an MRI scan done once a year or even less to measure if the tumor is shrinking or if it's there at all before being put on cabergoline.

I get blood tests done for my prolactin and TSH levels (they found that my TSH levels in my thyroid were too high but it wasn't as damaging as having high prolactin levels) every 3 to 6 months. I take Levothyroxine for my TSH levels.

When I see my endocrinologist she checks my thyroid and weight as well. She asks if my mental health is okay too and if I'm getting regular periods now (since high prolactin levels causes you to lose your menstrual cycle for years and it lowers your libido). I had very big problems with weight gain from prolactinoma but it seems like I have a yo-yo effect (when I lose weight I gain it back). I go to the gym to stay in shape and shake off all the energy that cabergoline gave me but still find it hard to lose weight.

According to my endo I can go and get pregnant now since prolactinoma makes people infertile and have a lack of libido but due to being unlucky in love, I don't have a stable partner so I find myself engaging in risky casual sex instead while on cabergoline (sorry if it's a bit TMI but your sex drive is part of the medical condition and treatment)... However she has prescribed me birth control (Jazz) that goes with my medication if I don't wanna get pregnant. My endo tells me if I need to prolong my intake of cabergoline...

If I get pregnant I have to stop the medication because it harms the baby, but maybe the tumor could grow back... some women on social media that I followed said that after childbirth (they are married unlike me), the tumor grew back : (

I was told that a pregnant woman shouldn’t be sick during her pregnancy and shouldn’t be on medication because of the damage to the unborn baby and to the mother’s health... she should be healthy when she is pregnant and giving birth... unless you were really trying to get pregnant... but I would advise people to not risk the mother and the baby’s health at once.

Edit: I also used to go get a few echocardiograms for the heart, to check if cabergoline side effects were affecting my heart valves badly. Considered going to a neurologist but me and my family thought it wasn’t necessary. Consulted with a neuro-surgeon about getting surgery done... They check my eyesight sometimes because it could cause losing your vision.

That's all I can think of for now in terms of my treatment. I don’t need brain surgery for this as it's not big enough (they cut it out with an endoscope that they put through the nose and it looks similar to having a lobotomy done...) I heard that after surgery it could grow back too so it seems like it's best for me to be on the medication to shrink it and lower my prolactin levels. Maybe will be on it for life.

[kellbug21-blog]

my  entire life story

Hi, I wanna tell u all about me and my life story. i was born and everything was fine for a few mins. Shortly after I was born I had a stroke. I had to be taken to the Miami children hospital and was put into a coma because i was having so many seizure When I woke up I was taken cared of by the doctors. After 3 weeks of lots of testing they discovered i had a stroke and  had epilepsy. I was able to go home afterwards with lots of seizure medison after my 2 disabilities  were  found. When I turned 5 years old I started to struggle on my first year of school. The stroke affected all my learning abilities. It affected my math, reading, reading comprehension, , learning memory, writing and spelling. I was slow learner  then everyone else in school. I get extended time on tests and help with homework due to my learning disability. For my math disability it makes me struggle with adding,subtraction,multiplication dividing and remembering numbers. For my reading disability i struggle with reading, decoding, remembering, getting lost when reading, read words wrong, re read what I'm reading, skipping words ,pronouncing and sounding out words. Four my writing i struggle with spelling,takes me a very long time to write, forget ending of the words, spell the words a different way and make punctuation errors. It doesn't mean i cant write. It's just harder then most people. My tests and work are sometimes modified because its to hard for me. People sometimes think i cant talk but i can. It's just i don't know what to say. The doctors who studied my mind said that My stroke makes me rock my body and bounce my head  and body subconsciously, I do it without knowing I'm doing it. I'm often told by people I shouldn't do that and get told to stop rocking my body or bouncing my head and body  because its considered weird and can make people uncomfortable because they often don't understand , dont do it themselves, dont have anybody in there family that does it, cant relate and its considered not normal , weird and different.  

but  the question we should all be asking is what is normal though? there is no  such thing as normal.  ill get stares by people for doing these  behaviors. when ever somebody pointed  it  out i felt  judged  and scared and felt like they thought i was weird. Did u know people made rocking chairs? if u see someone who rocks there body or bounces there head and body  and u notice  they arent aware there doing it please dont bring it up. if i rock my body or bounce my head and body  dont make me feel embarrassed. im doing subconsciously. Not every person that rocks there body  or bounces there head or body is a  weird  person. dont always assume when somewon rocks there body or bounces there body or head  are weird. i will rock my body subconsciously when im listening to music,  when im  thinking about something,  happy,sad,scared, or angry.  i might  do it randomly  subconsciously without any of these reasons above.  there are 3 reasons why a person rocks there body or bounces there body and or bounces there head. number 1: its because they were just born that way. number 2: they could be brain damage and u wouldnt even know it. if you ever meet or met somewon whos had a stroke or some type of brain injury  theres a 50 chance there gonna rock there body and/or  bounce there  head and body. number 3: its a obsessive compulsive behavior for that person. When I was 5 years old I started to do behaviors and show symptoms of another disability. My parents didn't really think much of it. They always thought it was just my stroke. Then one day my mom was reading about autism and Started to realize I was showing the same symptoms and behaviors. My mom went to the doctors and said to them what symptoms and behaviors I was showing and the doctors started to agree with her. So the neurologist doctors were studying my mind and were looking at my damage to my mind. theirs no test for autism but there are people who went to schools to study the mind and watch it by looking at it, recording it , observing it, watching what a persons doing and reading books about the mind. And it turned out I had another disability. Which was called Autism. At the time I didn't even know I would have autism because my parents never mentioned it to me and kept it hidden from me. They never felt the need to label me because it was very mild and didn't change who I was.

My 6th grade year came when i was 12 years old and it was bad. That was the year I found out I had autism. When I was in my math class I was obsessed over blood poisoning. Then my teacher asked me why I was obsessed over blood poisoning. Then I said i don't know why i just am. After i said that the teacher randomly says you have Autism. I said wait i have autism? And she said yep you do have autism. I thought to myself no i cant be. I thought i was misdiagnosed. And i told her prove it I don't believe u. Then she pulled out a paper and it said  i was  a student diagnosed with high functioning autism. When i saw that paper i was surprised and after a few mins i started to cry. i thought why me? and thought to myself i already had a stroke and learning issues. why do i have autism as well? I knew i would have to deal with this the rest of my life i thought to myself will i never have friends or get married because of my autism disability? Mom walked in the room a few mins after i found out and she saw me crying and started to wonder why i was crying and asked me whats wrong. my teacher realized telling me was a huge mistake.   my teacher told my mom we need to talk and pulled my mom aside for a moment. That's when my teacher told her. she said she was so sorry  to my mom and   said  she accidentally told me i have autism.   after that she told me come on  will talk about it more in the car. and i told her is what she saying true? is that paper true?  she told me come on again and i started to question in my head why isnt she telling me. i was still crying at the  time  while leaving the school and walking to the  car. After that we went into the car to get ready  to go to the doctors appointment and before we drove there she  told me i have a very mild form of autism. Then i asked my mom what caused it and she said nothing caused it and i was just born that way and she told me autism isn't something that can happen to u.     Brain injuries can cause autism like symptoms and or autism like behaviors but not autism. Autism is the same as having Down syndrome. I was born with autism and at the same time had a stroke a few mins after my birth. My autism makes me have sensory sensitivity issues with sound and can cause sounds to hurt me and sometimes becomes overload. my autism makes me have deficits in my social skills meaning there always impaired.   My social deficits impairments are making friendships, maintaining friendships, getting into a romantic relationship, continuing a  romantic relationship, starting,continuing ,ending conversations,  Reading facial expressions, body language, social cues, reading tone of voice , joining in group interactions and reading what people are thinking. My autistic behaviors are rewinding,obsessions, literal thinking, sameness with food, flat affect, monotone voice, asking the same question over and over, repeating myself and no filter. i might say something completly random and people would be surprised, think its idiotic  or  find it funny. you cant go around and force friendships they just have to happen. thats like forcing somewon to love u when they dont love u back. i dont want people to be my friend just because they feel bad for me.  I  want to be like everyone else.   i want people to understand me. its time to talk about how i feel. when ever im alone or out  in public i sometimes think to myself will i ever find love someday and have friends?   they say u cant find love you just need to let it come to you.   when im out in public i always see people with there friends talking and having a good time.  when i was in school i always   saw   people hugging  and kissing there loved ones in the hallways   and still see people  do  out in public places. i would  see people in the hallways, at lunch and walking down stairs  talking to there friends. i thought to myself why is it so easy for people to make conversations, relationships and friendships that fast?  i also thought to myself why am i not experiencing this as well? lets talk about my school experiences. when i was at my old  school i always had people who hated me  and  thought i was an idiot and i didnt know why.   i now know why they hated me. it was because of my autism, learning disability and the way i behaved. because i say random things, am quiet, dont talk the way most people do,behave differently  and have learning disabilities people think im not smart and think im an idiot because of the way i interact, behave  and  take longer to learn things.

i wanna explain emotions for a minute.

i always struggle with talking about  my feelings because  im worried how people will react. at a young age ur taught and told  not to show and express ur emotions. in public  and when ur around people  or someone u think u need to be happy all the time because showing emotion isnt acceptable. the only acceptable emotion ur allowed to show is to be happy. when ever u show ur sad ,scared or angry  about something people will tell u to stop acting like a kid and say  ur being rediculous.  im here to tell u its ok to show and express your emotions. were not robots. showing emotions is natural. its what makes us HUMAN. what is monotone voice? its when u speak without emotion. flat affect is when u show no emotions. what is a obsession? its when you think about something all the time or alot and talk about it alot.  it also  means u might need to compulsively do something  in order to get rid of the thought. literal thinking is when u believe anything and anybody tells you. it means you have struggle understanding metaphors, know when someones  joking  and figure of speech. i might speak literal at times. i may not always respond in the normal way. lets talk about rewinding for a moment. when i say rewinding i might go back to a certain part of a video or song and you might question it.   when i say no filter i mean i might say things that are racist, things you shouldnt say , inappropriate things and being honest, without realizing and aware what im saying is that and i might not understand why its not ok to say those things. being honest isnt always a bad thing but it can hurt someones  feelings and come across as being rude. because my autism makes me not think clearly i really need to think about it.

because i might say racist or inappropriate things people will get the wrong idea and it might make them feel bad about themselves and come across as im a bad person. if i ever  say something racist i usually would feel bad. only a racist person wouldn't feel bad.  

when i mean i struggle with reading tone of voice i mean i cant always tell when somewons being sarcastic, serious, speaking in a way that there bored, angry,happy,sad and all the other types of tone of voice.   i cant always tell when someone looks happy,sad, angry,scared,surprised bored,annoyed  and any other facial expressions. i wanna talk about repeating for a moment. when i say  i repeat myself  i might say the same thing again or over and over again without even knowing and aware im doing it.

 I never went around and told anyone about my autism and was told mine isn't the type where u can tell by looking at me. The rewinding was the only thing that became noticeable and people would question it but never knew i had it until they were told. if u were to look at me you wouldn't have guessed or noticed.  

When i mean i struggle with making conversations i mean i struggle with small talk and talking to people. There's the hi how are u? Then u say good or fine and sometimes ask back how are u? Then that person says good. But it never goes anywhere. I learn social skills. Does that mean i have great social skills? Nope. They will Always be impaired. in order to get an autism diagnosis it NEEDS to be disabling in some way and needs to always impair  and limit  the person.  what high functioning really means is how well a person can pass and  look normal. I was an autistic child and teenager and ill become an autistic adult and eventually an autistic old man. People think autism goes away when you get older which is not true.  Alot of the time people don't try to get to know me. i usually get ignored alot. i  sometimes dont try to get to know people because there judgemental and im afraid they just see me as some dumb  and weird person. I get uncomfortable when around you and other people because of my autism. I may be socially awkward  or appear annoying because of my deficits impairments. People don't often stop to think why that persons uncomfortable or socially awkward.    i sometimes dont respond to people because i dont know what to say , how to respond ,may not understand what there saying and need time to think. because i might not respond people might get confused,might  think i did not  hear them or think im ignoring them when im not. i didnt like being in special ed sometimes because there were people who came to help students with special needs when  some people see  a person in special ed they sometimes  automatically think that there dumb and to stupid.   not every person who helps a special needs person  are like that  and think that way but alot people are like that sadly. i  worry what  people think of me.

most people dont ever give me a chance.

whenever i was in a normal class i liked it because they wouldnt think of anything at all. i felt  normal  when ever i went in the regular classes. When i was in 10th grade i wrote a speech about my autism. i never thought people would like it. after i read it the whole class clapped. when they clapped i felt really happy and felt proud. I want friends but don't know always how to make them. people think i dont want friends and thats not true. there are 2 others reasons i struggle with making friends and there a small part on why its hard for me to make friends. first reason people judge me because my hand is bent and my fingers look weird  and different a bit. second reason i have trouble making friends is because i have learning issues. when a person sees u arent smart they think  your an idiot. people  nowadays only want to be friends, date and marry people who are considered not dumb and different. i know im not dumb im actually very smart. i have a very good vocabulary then most people and thats a stereotype where people think autistic people are smart and speak smart then most people.

Let's talk about cerebral palsy. Cerebral palsy is when you have trouble walking, eating,swallowing , have mussles issues and have speech issues. I mumble and talk to quietly without realizing it and might stutter. I trip and fall easily.   lets talk about my childhood. I grew up not having the childhood most people had where you talked to people, hanged out with friends, eating lunch with friends, going to sleep overs and parties with friends. I wish i got to have those experience but sadly i wont be able to because I'm older now. As you grow up ur expected a lot more and people expect you to behave a certain way , talk a certain way and  do certain things. people dont like it when you dont act like them, talk a certain way and behave like them. if you dont behave and talk the way people think u should act and say you will most likely not be accepted and they wouldnt ever want to be your friend, date you, marry you and get to know you because to them ur considered weird,dumb and not the social and society norm. in there eyes different is considered bad and shameful.  it makes people who want u to behave a certain way and talk a certain way angry because ur not meeting there expectations and want u to not be yourself. if you arent extroverted and if you dont talk people will make comments about it and tell you why dont u talk? well to answer your question i cant always talk because there are social rules you always have to follow and if u dont follow them people will get mad at u.  i cant always talk because i  dont always have a filter. if i were to talk about something that wasn't inappropriate and it was a normal conversation they probably wouldnt like it because to them its not the right way to talk. im sometimes quiet because i have nothing to say. you know the phrase people tell u to to just be yourself? yeah that phrase is a lie. What if you couldn't always do those things because of ur issues?  or what if u liked yourself for who you were and what you are? Why do people have to act a certain way and  talk a certain way just to be accepted? It sometimes makes me sad because i cant be myself. Nobody can honestly be themselves due to society. but sadly you have to behave  and talk  certain way. people try to stop and change people who are different. I enjoy some of my autism actually and wouldn't want to be cured. i like that i can rewind something and never get tired of watching it. We need to learn to stop caring what people think of us and learn to stop judging each other, weather people are good or bad. Nobodies perfect. Everybody makes mistakes. We need to just learn and grow. I hope that when i get friends and a girlfriend ill be accepted and if i ever do get married i hope I'm accepted by my wife to. people with learning disabilities get made fun of because they have a hard time  with reading, writing ,math and spelling. people try to act cool and popular in elementary school, middle school and high school.

but what they often dont realize is when they graduate high school they will no longer be considered cool and popular and will be like everyone else. I don't feel bad for myself.

There are some good things about myself. I'm non judgemental,accepting, nice ,smart and funny. I try my best to be a good person but i sometimes don't know how.

Sometimes i try my best to hide my right hand by Putting on my brace that makes it straight and people would just think i broke my arm.

I'll hide My right hand by using a long sleeve shirt and covering my right hand with the long sleeve just to make people not notice and look normal as possible. if somewon doesn't like that your a introvert then you dont need them in ur life. if u are extrovert accept it but dont change someone  else personality. if u are a introvert accept  your personality. if u are both extrovert and introvert personality accept it.

if someone doesn't like that you are being yourself , doesn't like  your  personality or is not liking that you arent talking and behaving  the way u should then forget them.

accept your personality. accept yourself for who you are and be yourself whether people like it or not. if u meet some won that is disabled or not try to get to know them.

If u see some won who's had a stroke help them and be there friend if u want to. If there's a person who's autistic you should accept them.  

if you love somebody who is  disabled, different or both you should accept them. if you have a friend that are any of these you should accept them.   if u have a friend or love somebody that doesn't have any issues and  there  just normal you should still accept them. I am so much more then my disability labels. Remember to be accepting of people who are different, black, white, Indian, Chinese gay,straight,bisexual,transgender,, asexual, lesbian, have anxiety disorder issues, have eating disorder,   disabled  Or not disabled and are just as normal as you.

I don't enjoy having these disabilities. But will always have to deal with them.

I hope my life gets better.