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AVM Survivors Network

Hello this is me.

#1

don’t really know what I am doing, so I thought that I would just write some stuff down.

My name is Jane, I am 42 and I had a brain bleed ( don’t know how to spell the other stuff) 9 years ago on September 13th. It was a Friday, wierd eh!

Well it was completely out of the blue and kinda bad, I nearly died and all that. I now have a shunt and my left side is not working very well. I use a scooter am dizzy loads and lets just say I feel crap.

I now have no job, live in Norfolk ( moved here because my partner got a new job) and am not really happy. I had spent lots of money studying while working so I have a Master’s in education Autism Adults and I had just been published. I could go on about my first failed degree, number of jobs and mental health difficulties. Another time maybe. Sorry that was a rant I think I just needs to get it down (using my one functioning hand)! Thank you for giving my this opportunity.

Jane XXX :dog2: :rainbow_flag:

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#2

Welcome Jane! I had a brain bleed in May of 2016 and spent Friday the 13th of May, 2016 in the step down unit of a neuro unit. I’ve aways been a little superstitious, and when those days roll around I try to be careful! Funny enough however my last day of my job after 28 1/2 years, guess what, Friday the 13th of July, 2018…go figure!

Its great you’re here and look forward to hearing more of your journey of you’re so inclined. You’ll see we have a ton of varied experiences here, and a great community. Take Care, John.

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#3

Hey Jane,
Welcome to the network. You are among friends here, many of us know what it’s like because we live it too. Ain’t it just fun. NOT.
I too have a shunt, well, I actually have 2. One fractured so they inserted a whole new one, leaving the old one floating around inside of me and I have all of those ‘Fun and Games’ in managing the fluctuating symptoms that go along with it all. The dizzies, the tingles, the headaches, etc, etc… all add up to that same feeling of crap.

Don’t you dare be apologising for that rant either, we all need a safe place to let it out and that is exactly what this place is, that safe place. Many people just don’t get it, they think ‘It’s been operated on, so it’s been fixed. So move on’. But how? It just ain’t that simple. We know this because we live it too. So you rant as much as you need. We have these plans in life, we aim ourselves in the direction we want to head. We take steps to achieve our goals and then BANG and our world implodes. Now what??? Where do we go from here???

I too was working within the disability sector and had been for over a decade, to then end up being the one with a disability has been real difficult to come to terms with, so to be saying I understand where you are coming from would be a bit of an understatement. For me now, well, I can’t work, so I come on here and try to assist other people having similar battles.

So, don’t be a stranger, come talk to us because as I say “We know this because we live it too.”

Merl from the Moderator Support Team

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#4

Hi Jane:

Welcome to our group. This is where you can vent, call your AVM foul names, cuss it out and everything else. It’s okay with us! I had to chuckle when you said you had your bleed on Friday the 13th. Well I had mine on the 13th as well, but it wasn’t on a Friday. My bleed in my Cerebellum was a little over 4 years ago, and I’m still on the road to total recovery. I’ve made great strides, but I still have issues too. Once again, welcome to the group. You can always come here for info, encouragement and support. My recipe for dealing with my AVM is P&P (Prayer & Patience).
Try it! Wishing you the best.

Sharon D…

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