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I'm 45 with wegeners diagnosted this time last year

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Guest
Guest

What a roller coaster of a year, i was taken into hospital this time last year with a suspected heart attack, after being ill for quite some. after many many tests i was lucky enough to be diagnosed before organ damage. The thing that stands out in all this for me is how alone you feel and the lack of support, not from groups but just for the little things, if your unable to see your own GP forget it as no-one has a clue about wegener's. Anyway, this is a poem i wrote when i was first diagnosed. My mood has improved since and i now realise there are others out there with this complicated rare horror. i think what i have realised is you live every day to the max when your feeling ok and rest when your not, oh, and keep your chin up

Oh my god how alone I feel

Has this really happened, is this for real?

A million to one that’s what they say

Well forget the statistics JUST TAKE IT AWAY

It's just rheumatics? , I’m sure they are wrong

Why all the tests? What’s going on?

A biopsy will clinch it I hear them say

Bugger biopsy. TAKE THIS AWAY

I’m frightened, it’s rare, and no one knows how to be

They whisper and sniffle when they come around me.

Doctors say that chemo may keep it at bay

But the disease is incurable. IT Won’t GO AWAY

Now a life full of medicine when once I was fit

Fatigue is my partner on my shoulder he’ll sit

I’ll be popping these pills, and checking myself

A permanent look out, ‘a voyeur of my health’.

There are others out there, I’m just finding out

Maybe I’m not so alone others know what its about

I can get more advice, and knowledge from what they say

Coz no matter how I take this IT’S NOT GOING AWAY

anyone who has wegeners and wants to contact me, please do so at

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2 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    Hi Carole, my partner Mark has just been diagnosed with Wegeners and starts his chemo on Monday. He is tired all the time and aches and has just been started by the Specialist on Steriods and other tablets. Did you work whilst you were being treated? Mark hopes to go back to work but I am not too sure if he will be able to whilst being treated. He is a coach driver. Mark and I liked your poem it is so true. Hope you keep well.

    Janet x

  • Guest
    Guest

    Posted

    my wife was diagnosed with wegeners over 8 years ago, shes had about 40 infusions of chemo which did not work in her case, 18 months ago she was given a infusion of retuxmub or retuximab, not to sure of the correct spelling, which put the wegeners in remision, her next infusion is 15th of july 2008, during all these years she had to give up work and had to retire at the age of 46, we have both always worked full time and its a bit of a blow to come down to one income, we didnt have a clue what benefits if any we could claim, also our life styles have had to change, our lifes now revolved around wegeners for years, never really going to far as she was always so tired, walking is painfully slow when we are out, she told me to go out and enjoy a night or two out, but at our age who do you go out with, yes its difficult for the partner who suffers in silent watching the wegeners taking over your partners life,

    many thanks for reading this,

  • Guest
    Guest

    Posted

    i have had wegeners since 1993. you poem is spot on in every way.
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