Sarah Angelini

The past few days have been an extreme struggle. Friday was the last of my pain medicine, my mom called for a refill early in the morning and by 4 they hadn't called me back, she called again but nobody answered. I've been stuck without any pain medicine and with no communication with anyone to help me. I've been having more and more "body Attacks", which is basically intense shooting pain up an entire side of my body, or my entire body. It's a pain which is more so in my nerves and comes on strong and without any reason. I guess that's what having a neurological brain disorder does to you. Saturday was my first attempt to be a teenager, I invited a few of my friends over for a Christmas-esque party. It was a lot to handle, and Sunday I was beyond exhausted. It was pretty intense not having ANY medication, so me and my mom went to meijer and bought some high dosage migraine medication and 500mg arthritis medicine. It doesn't work, but nothing really does. Lately I've been thinking about how my neurosurgeon has been acting shady since the beginning and it makes me feel increasingly uncertain. I want someone to care about me. She didn't say a word about the whole brain slumping thing until after my symptoms were persistent and she really had no other choice because I had a strong feeling something was up with my body, something was off. After my surgery I asked if she would do another MRI to make sure it was all good, and her remark was "no,if it wasn't would you want me to open you back up?" It didn't feel right at the time, it bothered me a lot. The surgery I may have to get is extremely invasive and the recovery time is longer than my first surgery. They basically have to support my brain with something, screwing some sort of thing into my skull to pull my brain up. I've lost hope in everything. I just want someone to care about me, tell me the truth. This is a major thing and it feels like my DOCTORS are taking the issue lightly, or that they blatantly don't give a shit about me whatsoever. To them I'm just a paycheck. How can she withhold information from me that I have every right to know. I know she's a neurosurgeon and that she does this type of thing often, but I'm a human being and I deserve some sort of respect and honesty. If she were to say its not her fault that I didn't ask, my reply would be "Was I supposed to ask if the structural integrity of my skull was alright to support my brain correctly?". She hasn't billed us yet, and I'm hoping that's not a sign. My rooms alone, the recovery room,ICU room and ect. were 30,000 dollars. I'm sick of having no answers, my life is on hold for this, pardon my french but I feel it's exactly what it is, bullshit. I need help, I need answers and I need someone in the medical field to care.





My blog is called I Am More Than Chiari, but right about now I get the feeling that's just about all I am, I feel that I don't have the resources to rise above it.


Another thing that's been happening is that I am 16, but inside I'm so much more mature than almost all people my age. I have a terribly hard time relating to them or seeing things in the same light. I've had a lot of things in my life happen, more than most 16 year olds should ever experience (more than anyone should ever experience), so hearing them complain about petty unnecessary crap makes my skin crawl. I have a hard time making REAL friends, lately I feel most of my friends are just temporary people I spend my school days with. I wish I could just be normal, without pain, without this new view on life.

I've mentioned the separation I've created between me and my father, I never said the specifics though. My dad was terribly terribly abusive my entire life, I always forgave him for what he did to me and my family, more than I ever should have. He has never once apologized or owned up to the pain hes inflicted in me that I feel will always be with me. My dad was removed by police officers from my house August 28th, the day after my 7th birthday. My parents then divorced, but from time to time he would hit me. I've stopped talking to my dad many many times because I felt there was no way I could possibly handle what was going on, what he did to me psychologically. This time, I asked him to pick me up 2 hours earlier and 1 mile further down the road than I had planned (I didn't go to drivers training that day because of terrible headaches, but despite all of that I still wanted to spend time with him). He met my mom at krogers to pick me up and the moment I could get in the car I felt the angry vibe, almost radiating off of him. The moment I shut the door he started yelling at me, saying I needed to learn how to stick to my plans and that my mom MADE him come one extra mile and all of this other dumb shit. I told him that I felt terrible and if he was going to say things like that I refused to hangout with him. So, he said to me "Fine, I don't want to hangout anyway, get out of my car"
I QUOTE. How can someone tell their daughter to get out of their car? At any rate I've decided that whats best for myself in my current situation is to keep a great distance between him and I. It hurts a lot hearing your own father tell you to get out of his car. I see a counselor and that's one thing that's been helping me get by...

...This was somewhat of a rant but it's only half of the thoughts inside of my brain.