This woman is an inspiration....

Annette Perez wrote a bilingual (Spanish/English) children s book about a little girl growing up with hydrocephalus called "my Brain won't float away".

Click this link for more information.

I need to write a book for adults now :)

Headache

Still get really crushingly blinding headaches on an almost daily basis. More updates soon.

an update for both of my readers

Sorry I haven't been updating much lately. Last month I started seeing a wonderful man who I'm deeply in love with...blah blah blah...and it's taken my mind off everything so I've been too happy to write about what's wrong with me.

I had two night terror attacks at his house. When we first started dating, I had told him about my "condition" and about the night terrors which I don't think are directly related but due to nerves. He was pretty well read on both problems, having a family member with Hydro.

The first time I had a night terror was also the second night I had spent at his place. He gently woke me up and told me everything was ok, he was there and he loved me and wouldn't let anything happen to me.

Last night I had another incident - I heard myself screaming my fucking head off and I couldn't' stop! I had dreamed that my guy had gotten out of bed to use the bathroom or something, and this figure got in the bed next to me -and that's when I started screaming in real life. My guy woke me up and again calmed me down, and when i was ok he told me I had been screaming for a good five minutes!

I've been having really bad headaches lately - whenever my head is lowered, like looking under things, or if I have to look up for too long, I get really dizzy and actually can't see for a few seconds. Then I get a headache that lasts for days! I don't think its a coincidence I've had a half dozen of these dizzy spells and then have a night terror attack.

Once the accident case is over - when i finally get my settlement - I"m going to have the endoscopic surgery.

like a hole in my head...

Long disjointed ramblings...

SO heres the latest on the head juice - the neurologist took my mri film to his buddy the neuroSURGEON who - TA DA - recommended surgery! Everyone - SHOCKED FACE. At first I was like "NO WAY IN HELL AM I HAVING A HOLE IN MY HEAD" because I need surgery like i need a hole in my head....so that's where the expression is from...? The neurologist said the surgery isn't necessary, but it would improve my quality of life and my psychological outlook. Meaning what I don't know - maybe I wont get really insanely depressed on a regular basis? You know what though a lot of people would like to improve their psychological outlook and they don't have holes drilled in their bloody skull.

The surgery isn't that big time as I thought - its endoscopic - basically they wouldn't cut me open like a over ripened cantaloupe - they would just drill two tiny holes IN MY BRAIN so the excess fluid would have another place to drain. the surgery has an 80% success rate and no reports of fatalities which is fantastic. But again let me reiterate that this is two holes being drilled in MY SKULL. This is not a decision to be made lightly - its not like "hmm maybe I should get french tips on my nails today?" no - its a hole in my skull - this is big time major surgery - BRAIN SURGERY.

My friends are divided about whether i should have it done. The argument for it is I should have it done while I don't have any symptoms, while I have the support of my friends and family (thanks Ralph!) who will be there for me - rather than one day passing the fuck out or going into epileptic fits and waking up with a straw sticking out of my head. This isn't shunting, its minor and I'd most likely only have to spend one night in hospital.

The argument against the surgery is there is nothing wrong with me, i don't have any symptoms and who knows what will happen once i get the holes drilled - will something go horribly wrong? IF things are OK don't fuck with it - basically. It is still BRAIN SURGERY and you really shouldn't fuck around up there unless its absolutely necessary.

News

So yesterday I went to the neurologist and it was a bit nerve wracking. He did a few little tests, like testing my reflexes, making me touch my toes, touching my fingers together...etc.. He read my brain scan chart and showed me where the fluid was building up. The end result is he said the condition is congenital - meaning I was born with it. Why I was never diagnosed with this sooner I have no fucking idea.

As for what's going on now - the neurologist to my test results to a Neurosurgeon affiliated with one of the top hospitals in Brooklyn for Neurology - and...I'll find out Monday what's going on. The Neuroloist left me a message today saying that there is absolutely nothing urgent but he would like to speak to me.

Uh

What the fuck does that mean?

I think it means that my condition isn't life threatening but there may be treatment or medication to alleviate the pressure - or something.

There is like so much crap going on right now - in addition to my REAL problems, my "lawyer" is constantly calling me - saying that I need to go to "physical therapy" more often, and now I have to go to another doctor who works for the car insurance that I'm suing - I think. I don't know - but I know I am not going to see any more fucking doctors who look for things wrong with me so they can get money from me. It's enough. And I decided that if this means there is no settlement then I don't fucking care - if I never want to a doctor in the first place I would never know I had this brain lemonade bullshit - who knows what this scam place would find wrong with me next? And its like how am I supposed to tell what's real or not? So yeah - no fucking settlement - I don't really care enough -there's only so much underhanded stuff I'll do before I draw the line.

My head's full of water

Last night I had another night terror and I think its about time i get out into the open with this.

The first one happened back in July after two back to back nights of staying up really late working for bands.  I got dropped off at my house at like 1 am and went right to sleep.  About two hours after I had went to bed, i was suddenly wide awake and terrified.  My mom was standing at the foot of my bed and in a very calming voice she told me to calm down, that i had a bad dream, and to try to go back to sleep.  I didn't have a night mare - in fact I still remember I was dreaming about going shopping or something mundane.  My mom had told me she ran into my room because she heard my screaming like I was being killed or something.  I was shaking - like I had just gotten into a fight or was PREPARED to fight - thats how i felt - pumped up with adrenaline.  I was too scared and confused and decided to do some online research.  I typed "wake up screaming" into google and came up with some death metal lyrics, then eventually found the Night terror resource site.    For those of you too lazy to click the link, night terrors are:

Night terrors occur during a phase of deep non-REM sleep usually within an hour after the subject goes to bed. This is also known as stage 4. During a night terror, which may last anywhere from five to twenty minutes, the person is still asleep, although the sleepers eyes may be open. When the subject does wake up, they usually have no recollection of the episode other than a sense of fear. This, however, is not always the case. Quite a few people interviewed can remember portions of the night terror, and some remember the whole thing.

so yeah - THAT.... then no incident for months.  Then in December when i was diagnosed with head trauma this shit started again - and a lot more frequently.  At one point last month I had an entire week of getting up in the middle of the night.  I attributed it to stress.  The last time before last night i felt like someone (a woman?) was trying to drag me off my bed by my right leg.  I woke up screaming, terrified, and my leg was swollen and throbbing.  could be because I stand on my feet for most of the day at work.

Then Last night I woke up screaming about two hours after I went to sleep.  My brother was watching a porno in the living room and I heard him go, "What the hell is that?"  but my mom had told him about my "problem" and he knew not to come in to disturb me.  Again I woke up all shaken, pumped with adrenaline, and I had all this ....I just started crying.  IT just all came out - everything.  The medical problems, everything - I just started bawling -and I didn't want to - I wanted to go back to sleep - I had to be up for work in a few hours!  But I couldn't go to sleep.  I surfed the 'net for a little bit, played a few games of solitaire, then told myself I HAD TO GO THE FUCK TO SLEEP.

This is getting fucking ridiculous now - but I wouldn't be surprised if this all has to do with the brain deformity and if i wasn't fucking scared before...

On the plus side...

er

That was a mistake...

Today I had to pick up the film of my MRI to bring to my neurologist next week.

I made the mistake of reading the report that came with it.

Basically according to the results of the MRI, my brain is seriously deformed, there is extreme weight being put on the brain stem because of this deformity. The left ventricle is extememly enlarged (hydrocephalus).

In red marker was written, "Holy shit she's still alive?!"

So I'm a little upset. On the plus side I probably shouldn't be too concerned about dieting anymore....