Had another episode yesterday where for18 hours, my hand/arm/torso was paralyzed on my left side. oh, how i love these wonderful events. /sarcasm. today but hand is still jagged, lacks movement, dexterity. cannot pick things up, my arm is heavy. when i go to grab a cup, my hand wobbles in the other direction, swaying around the place, before finding the cup and my fingers are too weak to pick it up. for f%$&($%( sake. hopefully i’ll recover soon.
My medical review is coming up soon and my Neurologist and Neurosurgeons are good doctors but they suck as empathetic people. I’m scared they’ll write that I’m competent to work, even I’m not. They only see I have paralysis/seizures every now and then but what’s the big deal about that? so you can’t move, so what?! but they don’t know how fucking tired, stressed, scared that it’s possible this is my last breath, get cramping headaches, being awake for any length of time is an immensely hard task, my left hand cannot be used for most things, severe depression, loss of confidence in myself and life, trauma etc. on top of being rushed to hospitals in ambulances frequently because you lose consciousness and cant move your arm and noone knows fucking why. I don’t go to hospitals anymore because they don’t know what to do with me because they can’t see that something is wrong, i’m not shaking like a normal seizure but I just can’t bloody MOVE and it’s not a bleed, so stare at me why you chew on your pen. and so, they CT scan me or they don’t and doctors just do stupid blood tests and up my medication and pretty much admit they don’t know what to do. THERE NEEDS TO BE MORE RESEARCH DONE INTO FUCKING ARTERIOVENOUS MALFORMATIONS so doctors can help people like me. Some don’t even know what one is, fucking idiots.
Yes, I am bitter.
[edit] i just realized it seems to be getting worse. i can barely move my arm and i have to really strain my mind to move my fingers even a fraction. please please don’t let it stay like this. i can’t even put my fingers around a cup now because they just won’t do what i tell them too. it’s only temporary, that’s what i have to keep thinking. and no i’m not going to a doctors because they dont help and its not a bleed.
As far as feeling bitter goes, you’ve got every right to feel that way. I don’t want you to think I don’t understand how you feel about those darn hospitals…it’s just that I’m worried about you and “better safe than sorry”.
i tried ringing my neurologist but her or her assistant could not be reached. i’ll try again tomorrow, but hopefully things will be better.
all my rage is penetrated here - i dont see a psychologist anymore (looking for a new one) and i don’t like to trouble loved ones with my avm ‘issues’, so it’s such a relief to rent them here, even if i do sound like a lunatic.
thanks connie, i understand your concern and i know i am stubborn. just every time i’ve gone (all other times i have long paralysis, i go straight to the ER), nothing is done. literally 10 hours or more waiting to see a doctor, and then i’m sent home after tests that show nothing.
anyway, i will go if it gets worse. thank you again
Vent any time you want, Catherine! I know what you mean. No one can figure out what causes the horrific headaches that srnd me to the E.R. I’m always getting scanned for a bleed, but it’s negative (thank God!). They just keep upping my pain meds too.
By the way, did you ever get the results of your angiogram?
Which hospital do you go to in Brisbane? I have found most of them useless, and as for being empathetic, well might as well give up there!..I found loads of neurosurgeons who didn’t even diagnose my AVM.
Have you only just started to get this numbness since ur radiation? Or was this one of the symptoms before??
I am starting to feel a lot more movement in my head, it clicks too sometimes - so weird, whenever i look to the right my eyes click- like those dolls u have when ur younger and their eye lashes flicker and sound a bit clicky.
I hope you find out what it is soon, Liam sounds like he may be on a winner there with the myoclonic seizures.
I know you probably don’t want to meet up with anyone when your feeling like this, but if it does help - I am in Brisbane, contact me when you like.
cathereine!! how are u doing today!!! are u okay? are u a bit better? what’s the news?! your last few posts were … well, moving. u are one beautiful woman so do not let this overcome u!!! please! U HAVEN’T BEEN ON THIS SITE FOR SOME TIME AND I HOPE U ARE OKAY …DMR
