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 I am not fine!!

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Boxer601
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PostSubject: I am not fine!!   Sat May 19, 2012 1:43 pm

Tired of people saying you look fine to me get back to work quit whining etc......... Sorry needing to vent
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Heidi
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PostSubject: Re: I am not fine!!   Sat May 19, 2012 2:46 pm

You vent all you need to, we totally understand because we are tired of being told that too hugs
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Jewls27
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PostSubject: Re: I am not fine!!   Sat May 19, 2012 3:03 pm

I totally agree with you, Im so sick of it also! Feels like they think im lying to them sometimes! Even some family shrug it off like its nothing. Even AFTER i show them articles or what the doctor says
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medmisfit
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PostSubject: Re: I am not fine!!   Sat May 19, 2012 7:31 pm

Absolutely! Work is the worst for me. I just had surgery three weeks ago & they're still treating me like I'm ridiculous. I've found that relying on members of this site & family/friends that do understand is the best way to get through it. There will always be people that don't get it, so try to focus on those that do.

Hugs,
Julie
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BananasMom
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PostSubject: Re: I am not fine!!   Mon May 21, 2012 7:29 pm

*hugs* Yes, we've all been there, sweetie. That's why sites like this mean the world to me! Smile
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Sophiasmom
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PostSubject: Re: I am not fine!!   Tue May 22, 2012 12:00 am

that's all I've heard since the year 2000 when I started getting sick: "well, you look good!" when I tell people how awful I feel. I have even gotten suspicion from my husband that "maybe there is a mental component to your illness" what a pile of crap! he finally stopped after he saw my LP happen in front of him and my pressure was elevated. but he still doesn't understand. the only one who does is my mother who I think has the same problem but has not been diagnosed. it took forever to even get anywhere with diagnosis because I think you tell your docs how bad you feel but they just don't get it. I have become very self-insulated. I do not expect to get anything I need from anyone else. I do not expect that anyone will understand. I do not expect my docs to do the right thing. I just set my sights on what the truth is to me and I keep going, and ignore the rest. I try not to feel my feelings because it is not a good place. I just try to do all I can to have a clear head from day to day. they can all go fly a kite! but it has been a big relief to finally get this diagnosis and find this community; we all speak the same language, finally I am not completely alone.
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Heidi
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PostSubject: Re: I am not fine!!   Tue May 22, 2012 12:44 am

It is so difficult to get across to people what it is like to live with IIH on a daily basis. My own sister admits she never understood my IIH, but now she has just been diagnosed with it, after three years of, being told it's ME, Depression and having memory tests. Now she gets it.

When someone tells us they have cancer, MS or some other disease we automatically accept it, sympathise and give support. When you have a disease or condition that is an invisible one, is rare and has very little awareness or media coverage, then that support, understanding and sympathy just isn't forthcoming.

We hope to change that as an organisation and charity.

If you haven't already point them in our direction or to [You must be registered and logged in to see this link.]and also show them these videos

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Krystyn<3
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PostSubject: Re: I am not fine!!   Tue May 22, 2012 1:52 am

There are very few people who understand a chronic condition. I have tried to push myself to do things that I normally would. I thought that I only felt as bad as I allowed. I was totally wrong, all along I should have been fighting to maintain wellness. With the school year ending, I have had a lot of family invade my domain. While feeling terrible I was asked, "whats the matter don't you feel good?" All I could do was laugh, the more rare times are when I feel good. Everyone knows about my IIH and yet it fails to register. It would be easier if I had an amputation, or if I had already gone blind then there would be a visible symptom. I think we need more IIH accessories something like the 'save the ta ta's' campaign that is memorable. My new mantra is "Pro-me I will not compromise myself." My illness may impact others but they are impacting my right back.
*Insert fighting smiley*
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Sophiasmom
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PostSubject: Re: I am not fine!!   Tue May 22, 2012 4:55 am

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sometimes I wish I had cancer instead. people understand that. and then there might be an endpoint to the misery.
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Sophiasmom
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PostSubject: Re: I am not fine!!   Tue May 22, 2012 4:14 pm

for a mantra, how about: "wishing for no brain squishing"?
it sort of gives a visual to people for what we are experiencing.
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VDubs
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PostSubject: Re: I am not fine!!   Wed May 23, 2012 4:06 am

I've tracked my IIH back to 2007 ish but from then till April 2011 I was told I had stress or mental health problems.

I've always been good and had my eye tested. Yet it was not untill one in April 2011 that my paps was seen

For the last year my mind fell apart and I too found people so harsh

But at the moment I have a happy ending as I was given mr stuntamabob 2 weeks ago

Finally I can think and see again. If anyone ever needs hugs I'm about x Hugs x


Dyslexic & Special
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Sophiasmom
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PostSubject: Re: I am not fine!!   Wed Jun 20, 2012 5:02 am

we could have an ad with a play on that COPD commercial, with an elephant sitting on our heads to show how much pressure we feel.
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Wylee
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PostSubject: Re: I am not fine!!   Wed Jun 20, 2012 5:12 am

where are the three stooges when we need them!!!
I can just picture Moe tightening a vise that is around Curly's head.
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