Sarah Angelini

Here I am

2010-01-19T17:46:00.000-08:00

Here I am Blogger, needing you again. I guess I need someplace to be completely honest. So I will be honest, 100% honest.
I thought I'd be fine without this special place to vent, but as I have found out I need an escape.
I seem to be in these cycles of depression.
My Nonni (italian for grandmother) passed away November 19th. I traveled to Florida for the burial. It was the hardest thing I have ever done. Seeing her lay there in that casket completely stiff and dead made me feel like there is just nothing in life. Nothing in life because it will always end this way. I feel a little bit more open to god. I need salvation.

On a lighter note I'm graduating this year, maybe.

When I look back onto my posts I feel a bit embarrassed about being so candid, yet at the same time I need to be this way. I have nothing else, nobody else to depend on. No one else listens.

2009-08-02T08:52:00.000-07:00

I've decided this is the end of my blogging days. If anyone wants to get ahold of me, Angelini.sarah@gmail.com is where you can do that.

2009-06-10T19:01:00.000-07:00

Tomorrow is my last day as a junior in high school and I can't wait for summer! I've been in a lot of pain, head and body.
I'm not complaining, just going along with life, where ever it so chooses to take me. I hope its somewhere with some good scenery because I'm in need of a vacation.

2009-05-20T04:43:00.000-07:00

I am tired tired tired. I could sleep forever and wake up and be exhausted still.

2009-05-14T19:14:00.000-07:00

Nothing new to report, my life still sucks.
Death is looming all around me, my Nonni is sick and I just watched my cat die. It makes me wonder what life really is about.

I'm still pretty numb, still pretty upset with no answers.

2009-04-27T18:27:00.000-07:00

I got my blood test results back and they were all normal.
I joined a venturing group which is basically an off branch of boy scouts.
My Nonni (grandma) who lives in florida is doing very very badly, they said 25% of her heart is working..

I've been pretty depressed lately, but it's mainly been very secretive. I keep things to myself and I hate to talk about how I'm feeling.

I haven't been going to school because I've been so stressed out and tired. I keep seriously considering dropping out because I'm so far behind in credits it doesn't matter anyway.

Things pretty much suck, but whatever I guess. I've been toughing it out

2009-04-10T06:08:00.000-07:00

I'm starting to look in other directions for answers instead of just Chiari related things. Lately my biggest complaint is the headaches, the forever foggy feeling I have and the temperature intolerance. If I get too warm my heart begins to race and I feel nauseas and exhausted, if I get too cold I begin to shiver and my body is ICE cold. I've been feeling so much fatigue as well. I did a google search of temperature intolerance and found a page about thyroid problems which create a foggy feeling and a temperature intolerance. It may not be anything but atleast its a new place to start.

2009-04-07T19:16:00.000-07:00

I feel I'm beginning to figure out who I am. I think I have always known but sometimes my severe insecurities talk me into thinking that I don't know who I really am on the inside. Spring break is here for me now, except looking out the window into a winter wonderland is quite surreal. We have about 10 inches of snow right now. I've spent the first 3 days of spring break doing nothing really, yesterday Collin, my good friend Jenni and I went to see monsters vs. aliens and afterward built a giant snowman taller than myself. I've been spending so much time away from the "world" it's as though all of my friendships have literally disintegrated right before me. I know they are all pretty much gone and I have no clue how to rebuild them or if I honestly want to. Part of me has become very very antisocial. It's hard to spend time with people or have relationships because I almost don't want to be involved with people. There's really no good way to give any sort of insight into my thought process lately. Thinking of how I used to have tons of friends and now only have at most a handful makes me sad but I have no desire or know how to fix it.

My headaches have been bad lately, and the insurance company denied me going back to U of M. Maybe I've lost hope or maybe the reality is setting in so there is no point in fussing over something I have NO control over.

I hope all is well for you.

2009-03-27T07:29:00.000-07:00

The insurance company is fighting us seeing the neurosurgeon at U of M again.
My appointment was for Monday for her to review my ct and mri, She ordered the scans and they approved us to see her once. It's so frustrating

2009-03-24T16:19:00.001-07:00

I had my MRI's and ct scan done monday, today i stayed home from school, i was so stressed and sickish so i slept in.
The insurance company keeps denying the requests we make to see the neurosurgeon who also works on pain management.

Sometimes i feel that insurance company are purely money hungry cows who care little about peoples well being.

2009-03-10T19:07:00.000-07:00

To say I've been feeling bad lately would be an understatement, I need answers soon. I'm too young to be going through these things, I deserve a social life with friends.

2009-03-05T16:54:00.000-08:00

good news, i got the earth watch program but the bad news is i got selected for something i don't really want at all. Id be going to Pennsylvania from July 12th through the 25th Mapping Antibiotic Resistant Bacteria Across a Landscape, doesn't sound fun to me.

2009-03-03T17:49:00.000-08:00

My life seems to be going downhill

Some shit happened to me which is quite quite personal so i will not be sharing it with you all, but it is not good.

2009-02-22T18:40:00.001-08:00

I've been feeling bad lately, my head hurts SO much.

2009-02-19T09:25:00.000-08:00

I've been feeling so alone, but it almost seems like a good thing. I haven't been going to school. I need to but I don't know if I have it in me. My head hurts terribly. I sat down today and did homework, which is nice i guess.

2009-02-17T21:19:00.000-08:00

I lay in bed tonight wondering how I can go on like this for much longer. Despite my words and complaints to my secret blogging world I keep a clean face. I don't complain outwardly or expect any sort of pity in the real world. I'm overdoing it, clearly. I want to be normal so bad that I pretend to be completely fine. It's all catching up to me now though. I am the only one who knows my true feelings and thoughts, most of the time I wish to keep it that way. The reality of my situation is I need help, like so many others who struggle and feel as though there is no where to turn and no relief. There are SO many questions and seemingly no right answers. I think about others who are struggling, such as Cindy, you seem to always have comfort to provide for me and I appreciate it sooo much,even though I know you are going through such a rough patch. I don't know what the answers are to my questions, I don't know what to do. I just know that I need help.

Like I said, I've been overdoing it. Doing too much and now I feel sick all the time and have intense headaches. It feels like the drive inside of me to be a young teenager overpowers the fact that when it's all said and done I'll be sitting around in agonizing pain.

2009-02-17T16:27:00.001-08:00

My headaches have been unbearably bad lately accompanied by nausea, it sucks.

2009-02-12T14:09:00.000-08:00

Nothing new, saw the doctor at U of M, She didn't say much except there are no answers, and its majority psychological and some other stuff. I don't know, I know it's not in my mind. I know that what I've been going through is NOT psychological, I've been sad but I honestly know that what I'm feeling's real. I know what I'm feeling is not psychological. So far 2 neurosurgeons say I need surgery, 1 says my symptoms aren't Chiari related and the other says that there isn't much to do and whatnot. I don't know what to think.

2009-02-11T18:53:00.000-08:00

It seems like I'm getting more and more "forgetful" It worries me, but only to a certain point.
I haven't really been doing anything, which would include going to school. I've been pretty blue. Whoa is me, right? ha..

2009-02-09T16:20:00.000-08:00

I've been thinking a lot lately, I don't know what I've been thinking about.
I guess when I think it ens up being about how I'm not like everyone else.
I find myself running away from social groups because I really don't want to interact with people who seem so fake and people with no morals. People who don't care about anything but themselves and not caring about doing the right thing or being a good honest person. I constantly feel like crying. Today and yesterday I've been sick, nauseas and have had a terrible stomach pain, along with a terrible headache that seems to be getting progressively worse.

The neurosurgeon only an hour away from my house had an opening so I have an appointment with her Thursday, which is good i guess..

I got a letter from Earth Watch telling me I'm a semi-finalist and have to fill out some papers and find out if I made it sometime this month.

2009-02-05T08:41:00.000-08:00

I heard back from the Institute of Chiari and they told me I do have slump and do need surgery. We are waiting to hear back from them about consultation appointments, so we will see.

2009-02-03T20:27:00.000-08:00

My legs are driving me nuts! It feels like something absolutely undescribable and its driving me crazy. I have to move or else it hurts soooo incredibly bad!

2009-02-03T17:12:00.001-08:00

7 days, still no sleep! My mother and I were able to compromise on some tylenol PM so I'll be trying that tonight, hopefully I can catch some z's tonight! Wish me luck!

2009-02-01T11:36:00.001-08:00

5 days with no sleep, i feel like im crazy

2009-01-30T06:44:00.000-08:00

I still haven't gone to sleep and my mom, who thinks fucking melatonin is going to help- WHEN IT HASN'T!, she literally won't let me use sleeping pills because shes some fucking fake hippie, along with my brother. I hate it, I feel like part of the reason I'm in situations like this is because of her, she will jump at the opportunity of me getting a numbing shot in my head but won't even let me take sleeping pills when I haven't slept in 3 nights, literally. It's retarded and I almost hate her for it.

I NEED sleep!

2009-01-29T07:50:00.000-08:00

I haven't slept yet, I CAN'T fall asleep. I took some sleeping medicine and still I never fell asleep, I'm so out of it and in pain and weird feeling. I hate it!

2009-01-28T07:05:00.000-08:00

I haven't gone to school yet this week. I don't feel good. I also have severe sleeping problems! Last night I laid in bed the entire night but never fell asleep, I went downstairs when I heard my mom walking around and told her, she said I could go upstairs and try to sleep so I did. I haven't fallen asleep YET. It's so frustrating. I'm also gaining weight, I eat but I don't really want to be active because it hurts. I'm always uncomfortable.
My mom is trying to get an appointment for me at the chiari institute in Wisconsin, I have no idea whats going to happen but I hope and pray its good.

2009-01-27T11:12:00.003-08:00

The neurosurgeon called this morning and left a message on the answering machine asking my mom if she could mail him my MRI's so he could review it again and possibly with other neurosurgeons.... strange?

2009-01-26T17:21:00.000-08:00

According to the neurosurgeon I saw today, I hardly even have Chiari. He looked at one of my MRI's out of the pile of 13 or 14 I brought with me. He told me my symptoms weren't Chiari related,and I'm suffering from migraines! He told me I should have a numbing shot in the back of my head. I refused.

To say the least, everything he said went in one ear and out the other because he would hardly even listen to me when I tried explaining my symptoms. I'm super disappointed, I was hoping for some sort of answers. I don't know where to go from here.

A Little Perspective

2009-01-25T17:26:00.001-08:00

Sometimes in life there is steep inclines in the greatness of the events happening, most people experience the excellence of life. I've experienced moments of beauty and moments where I've felt fully alive. I haven't felt that in a long time, I've almost lost the memory of how it feels. I can't wait until the day where feeling alive and truly happy is somewhat of an everyday occurrence. I miss having energy and being active and young. I can't believe I took it for granted for so long. They say you should try to take something positive out of every situation, I guess the good thing I can take away from having chiari is that I could never again take for granted a day when I felt like myself, alive happy and smiley.
My grandma has been fighting cancer for quite some time and is currently undergoing radiation. She can't eat now because of the amount of sores inside of her mouth so now she's having a feeding tube implanted. Seeing someone you love so much experiencing something so incredibly saddening puts a lot of things into to perspective, it makes it seem like what I've been going through is minuscule, almost as if comparing an ant to a moose.
Tomorrow is my second opinion, I need answers. I'm sick of putting my life on hold because i have Chiari, I want to be a 16 year old girl again.

2009-01-22T06:18:00.000-08:00

Monday morning I have an appointment with a neurosurgeon who specializes in Chiari at the Children's hospital. I don't have any expectations at all. People often ask me if I'm in pain/having a good day. I always try to have a happy response because I don't want to go around depressing people (that's what here is for..ha) Everyday I'm in pain, constantly and pretty much without any sort of relief. I choose to have a positive attitude and pretend like I'm okay. I've been in pain for almost 2 years, I think my body is just getting used to it. Some days I can't pretend because the pain is more intense than normal, days like today, so I stay home and lounge around hoping to feel better. I don't go around complaining and saying how bad I feel, so people assume that I'm fine, but I'm really really not. I just want my life back! I can only hope the day will come when someone will ask me how I am and my response will be an honest okay.

2009-01-16T08:01:00.000-08:00

I'm not doing good, at all. Nothing about any of this is good. I don't feel like mentioning it. There's a lot to say. I have a lot of negative feelings, maybe that's all I've got. I know I'm probably depressing everyone that reads this but I can't help it.

2009-01-06T13:59:00.000-08:00

I have a rare condition which they call cerebellar slump. My only option for relief is yet another surgery. I'm numb.

2008-12-31T09:41:00.000-08:00

A new years resolution has been on my mind lately, considering its new years day.
I think my resolution for this year is to feel good, however that may come about and no matter what I've got to do. I want to feel normal again, normal and in no pain. I'd say that the hardest part is knowing nobody can relate, I could tell my family members or friends how I feel, but they really don't understand. I get worried that people will start to feel like I'm exaggerating so I've learned to not complain.. or try my very hardest not to. Sometimes though, people mistake my not complaining for me feeling fine, when in reality I'm trying to stay positive even if I feel absolutely terrible. Truthfully I'm not fine, everyday's a struggle. I'm managing though, to say the most. I hope the new year brings along with it happiness and relief.

2008-12-28T16:48:00.000-08:00

I've lost almost all hope in alot of things. I don't find myself relating to anyone anymore. My mind thinks differently than most people, almost as if I'm not human. We tried to get an appointment with a doctor out of U of M but HMO denied the referral. Typical I suppose.
I've been in an extreme amount of pain lately. Life's so hard.
I just want to be happy and normal.

2008-12-26T08:57:00.000-08:00

I'm starting to not feel, To not care.
Why should I when nobody else does?

I'm somewhat of a prisoner in my own mind

2008-12-23T09:50:00.001-08:00

It sucks, all of it. Everything.

I'm getting SO good at pretending that it almost scares me.

Maybe I'm just becoming more normal, like everyone else who pretends

A little distraction..

2008-12-19T06:15:00.000-08:00

I started watching the show Dexter, and although its gory and all that I LOVE it!
My friends been trying to get me to watch it for a long time and I was always a little hesitant but last night I finally watched it.

We have a snow day and I think I may be the only person in Michigan to be unhappy about it, I hate being here doing nothing. I want to go do something! I can't though, because we are basically snowed in. It's crazy and I hope I don't die of anxiety!

My neurosurgeon has yet to answer my response, I talked to my dad...
He said he paid her last week, What a coincidence. She gets paid and now her nurses don't even call me back. I heard about a morphine patch, The only thing that's ever taken away my pain and headaches was morphine. Hopefully I can get some to help me out, but I don't know.

Dissapointment, to say the VERY least.

2008-12-15T17:01:00.000-08:00

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.

2008-12-08T17:02:00.000-08:00

Here I am.
Unhappy, in pain and struggling to live through each day.

I wish I could stay in bed and never get out.
I'm trapped inside of my own body.

2008-12-04T06:30:00.000-08:00

Today's a really hard day for me. This is much more than sadness and I'm not quite sure what to do about it, or what to do with myself. Along with chiari my life has been super stressful. I no longer speak to my dad and I'm not sure he minds so much, which bothers me a lot. There's so much going on in my mind, and with my body.

2008-12-02T16:27:00.000-08:00

Today I met with Dr.Gilmer and received the news I've been wanting all this time. She told me that my skull is shaped in a way that she was worried about my brain slumping when she did surgery. She said she took out less skull than she normally would but there was still the possibility of it happening regardless. She said, because of my persistent symptoms that there is a large possibility it may be happening. Next month, the 5th will be my MRI to determine exactly whats going on. If my brain is slumping, like she thinks, I'd have to get something put in to pull my brain up without creating pressure.

On a better note, my grandma is doing well. I hope the holidays make me cheery, because right now the smile I've been holding is fake.

2008-12-02T05:12:00.000-08:00

My appointment with my neurosurgeon is today, I'm hoping and praying for some answers. I stopped taking vicodin and valume and the anti nausea pill last thursday, just so I know what my real symptoms are. I still get nauseas and the pain, at some points, is pretty terrible. Things have been happening lately, making me thankful even if I am (most of the time) in constant pain. My grandma has cancer in her jaw again, and they just did surgery yesterday. I'm thankful that I only have chiari, even though it is quite a big deal, I'm realizing how much worse things could be.

2008-11-26T20:14:00.000-08:00

I am so nauseas everyday that I'm finding it hard to function. Sound makes it worse as well as moving my eyes. I feel as though I'm getting worse, and I no longer feel positive. My anti-nausea pills don't work. I hope god is watching over me, because I'm desperate for relief. I don't know how much longer I can take this. I'm so young and I have so many things I have to do, school work and just being involved in my life in general and I can't do it fully, I can't live fully because of the condition I'm in. I'd write more but I think I might pass out if I don't close my eyes.

Thank God for the holidays!

2008-11-25T08:42:00.000-08:00

My headaches are so terrible sometimes! The vicodin and valume aren't working, as I've said in previous entries. I get these hot flashes where I feel as though I will either end up puking or blacking out. Sometimes I've come too close for comfort to both of those things. What sort of effect is taking this much prescription medicine having on my body? Sometimes noises make me feel nauseas as well. I can't stand this vicious cycle that my day has become. My mom is looking into medicinal marijuana, she doesn't agree with the use of it but sees how insanely terrible I feel. She wants me to feel better and is willing to try ANYTHING since the doctors don't seem to have any answers.
I got my medical bracelet in the mail today, It's not huge and gaudy, I got a decorative one and It is nice and comfortable. I'm just glad the holidays are here so I can take a break from school, well sort of (I still have a project and final exam I have to make up). I'm starting to get back into a normal routine, even though its really hard for me at some points. Some points in the day though, I feel okay. But I've been trying to keep my spirits up by staying positive and happy even when feeling at my worst.

I can't wait for Thanksgiving!!!!!
I hope everyone has a wonderful holiday!

2008-11-23T17:33:00.001-08:00

This weekend was the best I've had in such a long time. I enjoyed myself thoroughly and realized the importance of having a little fun. With each day that passes this feeling inside of me gets stronger, the feeling that I have to do something. I have to do something for all of us, all of us suffering with this. I know I'm 16 but I'm going to do something. My thoughts lately have been that I need to be proactive. I know Chiari is currently incurable but I think awareness is much needed. This may seem like an idea way out of my league, but I want to write a book. Not just my story, but all of our stories. I was thinking if we could somehow get a publisher and anyone willing to share all the details of what they have gone through we could somehow put a book together. Have each chapter a different Chiarian's story. I've been writing bits and pieces hoping to put it all together. I really want to do this, I'm going to put everything I have into this. So if anyone would like to be involved PLEASE contact me, and we can work something out.

The science program (heres the link, it's very interesting; http://www.earthwatch.org/) i was nominated for is due today, hopefully everything goes well

2008-11-20T19:50:00.001-08:00

I am so stressed I could literally puke.
I finished my drivers training classes, but I'm so far behind in school that its making me feel unbearably miserable. I'm exhausted all the time as well. Absolutely exhausted, and nauseas. I need something to help me, I cant explain it well enough but somethings wrong.

2008-11-17T07:33:00.000-08:00

This morning I woke up to birds chirping, the ground has a light layer of snow and my windows were shut tight. For some reason though, I heard them loud and clear. I can't explain why it made me so happy to hear them, but it did.

2008-11-16T06:56:00.000-08:00

I found this photograph today, it sort of struck me in a weird way. I go on everyday like a normal person. The only difference with me is that I have Arnold Chiari. It's not that I forget that I have Chiari, its just sometimes I feel normal again. Sometimes I forget that I have a scar (even though its still really scabby). I forget that a little over a month ago I had to get brain surgery.

My headaches are still here, everyday all day long. I'm now on valume as well as vicodin and neither of those things are working. On top of that, my throat is killing me, I'm on antibiotics but it hasn't helped me yet. I'm hoping this week is much better than last.

On a positive note, I got nominated from my teachers at school to do a science program in the summer. In order to win the all expense paid trip to work with a researcher I have to write a story about my life. The boy that won it last year had a pretty powerful story about his drug addicted mother among other things. I have no idea what to write, or even where to start. Finals are this week and I'm behind still in school because I can hardly make it through the 2 hours of school I'm attending now. I also have drivers training Monday-Thursday 3-5 pm. My life is busy, and I'm just not quite sure I can handle it all, but I'm trying. I know it seems like I'm a big downer, but this is my venting spot. This is where I let everything out. Nobody else knows about these things, my thoughts and true feelings, nobody but the people reading.

Through all of this though, my boyfriend has been amazingly supportive. He is there for me, Helping me through every obstacle that faces me. He is there for me at my best and worst times, even when I'm sitting on my kitchen floor almost in tears. It feels good to know that he will be here for me no matter what, it's one of those things that keeps me going every single day.

2008-11-13T05:44:00.001-08:00

My heads killing me today and I think I may just be sick now as well.

I really appreciate everyones comments. It's one of those things that keeps me going. Thank you all!

2008-11-12T13:13:00.001-08:00

Today was sort of my breaking point, I didn't do anything. I didn't go to school, or drivers training. I just needed a break and I've been feeling sort of sick, not deathly ill, I just don't feel 100%. I went to the doctors and she said I probably have strep, so I shouldn't go to school. I definitely feel like I need my rest, except I can't rest because I'm so uncomfortable when I lay down. I've been really stressed with school trying to keep my grades at A's. I need some sort of relief from the pain. It's a constant thing for me, I'm always in somewhat terrible pain and at times it gets worse. I just can't do it all anymore. I can't get A's and be in pain every moment of my life and go to drivers training and not be able to sleep. I'm starting to feel the effect of the stress. I just need SOME sort of relief!

2008-11-09T11:00:00.000-08:00

I ended up having to go to the ER, 3 days in the hospital with a ton of tests and morphine accompanied by Tylenol 3's, and that didn't even help the headaches. They couldn't find anything wrong, and they said the blood was somewhat strange but nothing to be worried about. So they prescribed me vicodin and sent me home. I hate having to take pain pills in order to be able to function.

2008-11-05T06:18:00.000-08:00

I woke up this morning with blood crusted around part of my incision. I don't know whats going on with me, and I'm sure people are getting sick of hearing me complain about my pain. People probably don't understand why tomorrows a month since i got surgery and I'm still in so much pain, even I don't understand. I'm hoping everything's okay, I could never handle getting more surgery.

2008-11-04T19:14:00.000-08:00

My life consists of complete and absolute pain. Everyday is full of terrible and almost, at some points, unbearable pain. I wish there was relief, but even 2 Tylenol 3's don't do the trick.

2008-11-02T12:33:00.000-08:00

For awhile there I thought I was out of the water for the pain, but it's all hit me suddenly and intensely. I'm managing though, and I will continue to do so.

2008-10-22T19:08:00.000-07:00

My pain is still persistent, today worse than ever before. I feel as though I'm 100 years old. My lungs are wheezy and I cant figure out why, I don't know if it's related. The days are getting harder and longer and more tiring but I'm making it. I just wish someone could relate to me.

Maybe I just need a little hope, something to keep me going.

2008-10-16T02:25:00.000-07:00

My surgery was successful (as far as I know), The compression in the back of my skull had warn the bone down to as thin as a babies, and my brain stem was off to one side. I meet with the neurosurgeon October 21st to see how my incision is healing and when I should be going back to school. I was completely incoherent from Monday the 6th until about the 12th, ( I was fully awake but on so much medicine I couldn't remember anything to save my life) I have little to no recollection of any hospital visitors, phone conversations, or any other human interaction during those 6 days. My life consisted of nausea, extreme pain, sleeping, becoming overwhelmed with emotions and crying. My pain is now in my body, my knees and basically the entire lower region of my pelvis and back. I lose my hearing in my ears periodically and sometimes at night my eyes will shake when I try to go to sleep, making me feel like I'm having a seizure.

Surgery is weird, at first I had so much hope inside of me and after the decompression surgery I felt invincible, in the worst pain of my life but blessed to be alive. My family and friends were all here for me 100%, making me feel like I could do this no matter how nauseas i felt or how painful it got. I guess my faith in myself is fading, or maybe theirs. With the loss of intensity in their support and understanding of exactly what I'm going through I've lost touch with the "I'm absolutely blessed and can't believe I'm alive to fulfill out each day the best I can" attitude. My brother said something yesterday that sort of started all of the good positive feelings to lessen, something along the lines of "Just because you had brain surgery doesn't mean you should be pampered, it doesn't make you special". Those weren't his exact words but it struck something inside of me. Afterwards I just sat there thinking and crying, how heartless of him, it takes everything inside of me each day to keep going and to try to stay as positive as I can, which is when I started feeling more and more alone. The thing is, nobody understands that living, doing everyday things is a TASK. I wake up in the morning (extremely early some days) in pain, like I'm a 100 year old woman who's broken her hips, knees and back repeatedly. After laying in bed exhausted, and not being able to get back to sleep I meander downstairs, get some breakfast and take my pain medicine along with some steroids for swelling and after a couple minutes head back upstairs to try to fall back to sleep. Normally I sleep until 11 or as late 2 sometimes even. When i wake up, I go back downstairs for more food (I'm starving by then) and then attempt to wash myself the best I possibly can. I don't know how it is for others who just had the decompression surgery but bathing is the hardest, most exhausting thing I have to do each day. After a bath thats agonizingly long I'm completely and utterly exhausted, and not to mention I'm not that clean either. The rest of my day is either me sleeping or laying down. I'm a 16 year old girl, but I can hardly move around for long before my body seems to want to give up and stop completely. My decompression surgery was October 6th, and since then I hadn't left the house besides to come back from the hospital and for a few car rides with my mom to drop my boyfriend off at his house (car rides are also very exhausting, and painful).

Yesterday was the first day I left my house in clothes (normally I'm in my pj's) with any intention of leaving the car whatsoever, I was starting to feel more like a hermit crab rather than a teenage girl. Me and my mom decided we'd try really hard to get me through the salvation army, I just needed to get out. After walking around for 5 or 10 minutes my entire body just couldn't do it anymore, I made sure to eat tons of food for energy but my body cannot handle me shuffling around (my movements aren't really steps right now, more like old people shuffles). I found a nice little chair and tried to regain some energy because I was completely determined to get through the store, which in the end I ended up doing. The thing that struck me most is how different I felt, My hairs sorta greasy, no matter how hard I try to wash it. It's really thin and falls out all of the time everywhere, I'm weak and the last thing on my mind is to put on some makeup. The range of motion in my neck is still coming back so I move more like a robot than a human. People look at me with this look in their eyes, like they feel bad. With all those people walking around me inside of that store I felt less human, I felt like someone who everyone knew was in pain, everyone knew was struggling to smile and I hated that.

I guess this blogs not as nice as i thought it would have been, but its 6am on a Thursday morning and sleeping was the last thing I was going to be able to do. I hope that even though my struggle seems like a lot of me right now (which it is), if anyone else with Chiari is reading this then disregard what I'm saying because you can absolutely do it, even if you have your down moments and thoughts like I do. Right now I just wish I had someone to relate to, someone who's been through this all before.

These are not the greatest pictures ever, but this is just some pictures my mom took of me at the hospital. My lip got a huge blister from being inhibited face down for 3 hours, it was absolutely humongous.

I'm trying to stay positive.

surgery is not so fun

2008-10-09T14:33:00.000-07:00

Today is the 4th day of my hospital stay, the first day i dont remember anthing at all besides extreme pain and lots of tears. I'm missing alot of hair, ill update tomorrow with photos and details. Thank you to everyone for all of your prayers and thoughts, i appreciate them all and they all paid off!

Today seems like a good day for brain surgery... I think?

2008-10-06T02:45:00.000-07:00

Today seems like a good day for brain surgery.

But really, I went to bed at 12 last night and couldn't sleep for the life of me. I don't feel much emotion about it, yet at the same time I feel too much. When someone says to me "good luck on your surgery" I almost say to them, "I'm sorry, Brain surgery? I'm not getting brain surgery". It feels to me like they are mistaking me with someone else. But here i go, head first into this, thinking makes me scared. Wish me well, prayers and thoughts are very much appreciated.

2008-10-04T20:14:00.001-07:00

Today was overwhelming and wonderful, but mostly overwhelming.

I cried, it all sort of hurts now i guess. Maybe thats a good thing.

2008-10-03T11:51:00.000-07:00

Today was somewhat overwhelming, the last day of school until I'm healed, I'm realizing how much is coming up for me. The teachers made me a big pink card with flowers on it, opening it I almost cried. Everything is becoming more and more real the closer Monday gets.

2008-10-01T17:20:00.000-07:00

With everyday that passes the more numb I seem to get to all of this. Getting brain surgery is one of the biggest things that will ever happen to me in my entire life, yet for some reason I don't feel much about it. I don't know whether this is the result of me numbing myself in some sort of subconscious way or if I really don't feel anything. When I'm around people, family for the most part, I try to be strong so everyone else doesn't worry about me, people don't need the extra burden of worrying. But when I sit by myself thinking about what soon will be my reality, my eyes sometimes swell up with tears, but thats all I let it get to.This is my thing, my problem and I feel bad anyone worries about me at all. I don't know if I'm scared, or if I'm anything at all for that matter. I need to get through this, that's all I can think, that this is something I have to do.

Surgery

2008-09-30T16:28:00.000-07:00

I woke up this morning with little to no concern or anxiety about what the day held for me. I took a shower and got ready like the day was completely normal, as if I were simply going to school. I try to take those moments, like showering, to feel like I'm a normal person without pain. Having Arnold Chiari makes me feel weird, even though it shouldn't, I feel weird knowing theres something wrong with me and always has been, and that somehow I've only now stumbled upon it. I arrived at the doctors office at 12pm and finally was escorted to a room at 145, the longest hour and 45 minute wait of my entire life. The door opened and a 4'11 woman came walking in with a smile on her face. She examined my MRI's and confirmed that I definitely have Chiari, without a doubt. She measured my cerebellum, it's 8mm which is pretty long. She tested my motor skills and reactions and they were all really off. My mom asked her what she recommended, she said I definitely needed the surgery, which basically entails removing part of my top vertebrae thats cramping the space and therefore causing all of my pain and other symptoms, and opening up my skull. I haven't cried about it, which I believe is because I knew this was coming, I knew what to expect. My brain surgery is monday at Beaumont hospital. A surprising fact is that i will not be bald. (not that if i would have to of been it would have been a big deal anyways). My family and friends have been here for me 100% which is so reassuring. I'm glad that soon I may be pain free, and I cannot wait!

Diagnosis

2008-09-29T15:33:00.000-07:00

8 months ago I started feeling nauseas and really hot, like I had a fever but a strange sort of hot sensation, with no clues as to why I dismissed it as nothing. Every once in awhile I would get headaches that felt like someone hit me with a baseball bat in the back of my head as hard as they possibly could. I told my mom and she said I probably was just getting migraines and I figured i probably was too. Overtime my headaches would get more and more frequent, along with nausea and strange body aches and pains. I saw a chiropractor and I told him I swore I had a brain tumor or something, because of the constant headaches that would become less painful when I laid on my back. He told me I didn't have a tumor and that it was probably just nothing. When I would tell someone, I seemed completely insane. Then the headaches started everyday, some lasting 4 or 5 hours along with weird body numbness, along with aches and stabbing pain. I finally decided to go see my family doctor who asked me where my pain was and had me do some tests to see how my motor skills were, then told me shes ordering an MRI along with an EKG (I was also having heart palpitations). My tests went well and I waited 5 days before hearing back from the doctor, who then told me I had Arnold Chiari Malformation type 1 and that I needed to go see a neuro surgeon. Being diagnosed with Arnold Chiari malformation type 1 is the scariest thing that has ever happened to me. Chiari malformation is an abnormality in the lower part of the brain called the cerebellum. There is no cure for chiari, only headache and pain management, physical therapy, as well as surgery. Tomorrow I meet with a neurosurgeon at Beaumont hospital to figure out what the best treatment for me is. The only thing that keeps crossing my mind is that finally, the most nerve racking part of not knowing whats going to happen with me will soon be over.