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 Huggy diagnosed 2010

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huggy
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PostSubject: Huggy diagnosed 2010   Thu May 10, 2012 7:18 pm

Nice to come across this website.

I got diagnosed with IIH in September 2010, fortunately my eyes have not been affected, apart from photophobia when the pressure got too high. I had a LP shunt in January this year, which I'm struggling with (long story lol, I'll bore you with it later in the surgery section)

I have Ehlers Danlos Syndrome too, guess I'm extra special! Basically means my joints are hypermobile and have bruise easily.

I work full time for a charity, i'm on sick leave at the moment though.

Live with my partner in London. We have a rescue pug, who I love more than anything.
I guess I'm a frustrated geek, love reading, theatre, cooking and usual stuff.

Oh and after seeing several episodes of Hoarders, I'm obsessed with cleaning! lol
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Heidi
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PostSubject: Re: Huggy diagnosed 2010   Thu May 10, 2012 8:52 pm

A very warm welcome to the group. hug I love your spirit and you obviously have a strong determination which I also admire. Having IIH is hard enough but to have another illness on top of that is very difficult for some to cope with.

I applaud you for continuing to work fulltime, it is always reassuring and inspirational when you read that a sufferer of IIH can work and juggle the illness so to speak, it gives hope especially to the newly diagnosed.

I'm a little OCD with the cleaning myself, and after watching hoarders it's hardly surprising lol.

Heidi
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BananasMom
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PostSubject: Re: Huggy diagnosed 2010   Thu May 10, 2012 9:56 pm

I love Hoarders! Always makes me feel like my house isn't quite as messy as I thought it was ... :lol:

Welcome to the group! I'm glad you've joined us and I look forward to getting to know you better. Sorry to hear you are having troubles with your shunt. I don't have a shunt myself, but lots of the folks here do, and I know they'll all be glad to share their experience and try to be helpful.

This site has been a wonderful source of information and support for me, and I hope it will be the same for you! *hugs*
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Wylee
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PostSubject: Re: Huggy diagnosed 2010   Fri May 11, 2012 2:46 am

Hello Huggy, and welcome2. I have recently joined a chronic illness group here in North Carolina. The organizer has E-DS and had a VP Shunt installed. That is quite a bit of challenges y'all are dealing with. I wish you good times and am looking forward to hearing more of your story.
I have three rescue cats. And I swear, they know they were and are so much more appreciative.
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huggy
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PostSubject: Re: Huggy diagnosed 2010   Fri May 11, 2012 12:14 pm

Thank you so much for your warm welcome... very sweet :well done

Wylee, been trying to find someone with EDS and IIH, very interesting. Nice to know I'm not THAT special Very Happy

Oh i. loving the emicons on this site... do poke me if i go too mad :oops:

So yes Hoarders... lol. Since I've been home I'm found some really werird programmes on TV..loving the Tidy home in New York programme, specially the camp guy who presents it. Least he tells them how filthy they are! lol

Notice 24 is coming on C4 soon. Funnily enough I was asked to be on that. Didn't think the world was ready to see my belly on tv though and declined. Be interesting to watch it though and hurl abuse at the tv with who my viewpoints. I really do need to get out more!

Anyway... have a good day everyone, thanks again for the warm welcome thank you

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