Life after diagnosis

help with getting a diagnosis

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Life after diagnosis

Postby kittycat » Thu Nov 04, 2010 10:36 am

I wondered if anyone has any positive stories about how their life improved after diagnosis? I got my illness phobic partner to (skim?) read the tmau websites and he said 'you can't have that, I can't smell it' and I emailed my bro saying I wasn't mad, just rare, with the websites and he left a message on my phone saying 'YOU haven't got that!' Move over world experts, there's two new kids on the block! I was thinking of sending a round robin to my friends on the lines of Re: TMAU....I've been diagnosed after 35 yrs of this....I'm sorry if I've been crabby...love Flipper. Also thinking of business cards to hand to loud people in hot shops, explaining this illness. Does anyone think these ideas are wise or will I regret it? Kx
kittycat
 
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Re: Life after diagnosis

Postby kittycat » Thu Nov 04, 2010 11:21 am

Ps. Have just spoken to bro on phone for the last hour and I think he's beginning to get it. Feeling like I've 'come out', very liberating! All you hesitators...get diagnosed :) Kx
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Re: Life after diagnosis

Postby mel304067 » Thu Nov 04, 2010 12:34 pm

Hiya kittycat, I also feel a sort of coming out relief too! So even with only that change I feel my life's improving already.
My sisters going to be the hard one to tell as she was my main verbal reminder of what I am. I've been pleasently surprised at my friends reaction though.
The business cards thing is an idea I dont know if i'd be brave enough to take on myself! But a good one!
One thing I have to say though, is all the years of comments and cruel jibes, not one of them has came from a child. It's always been adults!
Mel :?:
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Re: Life after diagnosis

Postby Lisa » Thu Nov 04, 2010 2:47 pm

Kittycat, it is a relief, after all the years I've suffered, to finally have a name for it, and know it's not in my head, is a great feeling. As for the business cards, I've already ordered mine. :)
Lisa
 
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Re: Life after diagnosis

Postby Lisa » Thu Nov 04, 2010 2:49 pm

kittycat wrote:I wondered if anyone has any positive stories about how their life improved after diagnosis? I got my illness phobic partner to (skim?) read the tmau websites and he said 'you can't have that, I can't smell it' and I emailed my bro saying I wasn't mad, just rare, with the websites and he left a message on my phone saying 'YOU haven't got that!' Move over world experts, there's two new kids on the block! I was thinking of sending a round robin to my friends on the lines of Re: TMAU....I've been diagnosed after 35 yrs of this....I'm sorry if I've been crabby...love Flipper. Also thinking of business cards to hand to loud people in hot shops, explaining this illness. Does anyone think these ideas are wise or will I regret it? Kx





Yes, had all that, "theres nothing wrong with you", I"I cant smell anything", must be something in your nose, blah, blah, blah.
Lisa
 
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Re: Life after diagnosis

Postby Maisie » Thu Nov 04, 2010 6:54 pm

Hi Kittycat

I haven't got my diagnosis yet, my urine samples went away nearly 4 weeks ago so hoping for a result soon but I'm sure it will be positive.

The three people I've told (including my doctor) have all said "No, you haven't got that. I've never smelt anything bad on you". I wish they could be a fly on the wall in my life!!!

I love your posts, you've got such a fantastic sense of humour. Keep it up!
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Re: Life after diagnosis

Postby kittycat » Thu Nov 04, 2010 10:51 pm

Thanks for your response ladies, I can't get enough of your thoughts on this forum, this disease makes us so lonely and every positive answer is like a healing balm :)
Sorry Mel, I accused you of liking my humour in another post when it was Maisie. Ta Maisie. I was going to say something to you, and Lisa, but I've forgotton what now, lack of omega 3 I say!! What I really meant to ask you Mel was, what do you mean about your sister, what has she said to you? There can be a lot of jealousy in families, the famous sibling rivalry :evil:
No-one menched my email to my friends, did you think I was only joking or is it a rubbish idea? I'm just so fed up with the elephant in the room. Love to you all, Kx
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Re: Life after diagnosis

Postby mel304067 » Fri Nov 05, 2010 11:48 am

Hiya k,
My sis called me "honk" when growing up,(nothing like a reminder eh?) and is not the type to sugar coat anything so perhaps when I pluck up courage to tell her she'll be the only one to be honest! You can pick your friends!!! :?
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Re: Life after diagnosis

Postby kittycat » Fri Nov 05, 2010 12:11 pm

Oh she's hilarious, your sister. :( But if she's honest she may turn out trumps, and even apologise /sympathise like my bro!! If she was mine she'd be harnessed and working as my own personal sniffer dog! 8-) Kx
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Re: Life after diagnosis

Postby kittycat » Mon Nov 08, 2010 11:12 pm

On my diagnosis it said 'diminished' secondary, has anyone else had that one? I can't decide if it's cos I'm middle-aged (if I live to a 120) or the probiotics have 'diminished it'. It also says I can phone Dr Manning with questions about the diagnosis, has anyone done that ? Kx
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