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Date: 23.08.2010
From: Sally

Subject: blue badge

Hi gang! Just got back from hols to find out I've been turned down for a BB. Grrr! I had the most cursory examination possible, the woman was even ticking the boxes before I had given any answers! The letter said if I got a consultant's letter saying I had mobility problems they would reconsider but when I offered the OT the letters I had she turned them down. They also said that I wasn't in pain when I walked. NOT TRUE!! Didn't get a chance to say anything. Swear to god I was only in the room for about 3 mins. I am furious. Don't mind being turned down for legitimate reasons but the day after I had the interview I had to have a steroid jab as was in so much pain. Been driven around all week by my sister as can't walk very much. I live on my own and just can't manage this blooming disease any longer. Btw, have started on MTX injections but had to miss two doses due to having a virus. However, managed to have a lovely break. Not pleased to be home though.
How are you all?
xx
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Date: 25.08.2010
From: Sally

Subject: Re: blue badge

Thanks for the support
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Date: 26.08.2010
From: Jake

Subject: Re: blue badge

Hey Sally
Im a newbie too here.
these guys are unreal, they are just pencil pushers and have the right to decide yes or no, its crazy.
i would try and see your local MP or council, just make some noise shake some trees and see how you do.
i would have thought that MTX alone would be enough of an excuse for a blue badge, unless somebody can come and say they are on the drug and having a really pleasant time?
when it comes to council/courts/anything govermental dont expect the truth to prevail.
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Date: 26.08.2010
From: katknapp

Subject: Re: blue badge

It terrible,my mum found it very humiliating,she was turned down the first time..and she has arthritis,diabetes and kidney failure and imn a wheelchair!
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Date: 26.08.2010
From: Sally

Subject: Re: blue badge

Thanks! My gp said to keep battling the beaurocracy (can't spell that this morning.) I know the councillor in charge of Adult social s
Svs so will have a word with her when I see her next week. I'm bed bound at the moment with a really nasty virus and on antibiotics for secondary infection so have no energy to start writing letters. But will when I feel better. Can't believe your mum turned down if she is in a wheelchair. I don't see what they lose by giving out BB more easily. Maybe even save money - people more independent and self reliant, less isolated etc.
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Date: 26.08.2010
From: KayJay

Subject: Re: blue badge

Sally sorry to hear you are not well and the BB refusal. You had to be examined to get one ?? That's disgraceful !! I must be lucky where I live [ Sheffield ] and I got mine when I got DLA I just had to go to the council offices with a photo and it cost £5.00. I don't drive because of my ankle but I can use it when my Son takes me shopping. I also got a free mobility bus pass which my GP pushed for me as I use the bus mainly to get about.

Hope you feel better soon Sally then you can start to appeal for the BB ;0)
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Date: 26.08.2010
From: Sally

Subject: Re: blue badge

Thanks Kay. I feel really ill at the moment, antibiotics don't seem to be working very well. U am so depressed with it all but thanks for your support.
How are you?
xx
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Date: 26.08.2010
From: KayJay

Subject: Re: blue badge

Hi Sally I'm fine thanks. The only problem area [ at the mo ] is my feet especially my right foot it swells up at the ankle and bliddy hurts. I've already got a dodgy left ankle and have to wear a brace for that. Hope you get better soon - if the anti biotics don't work tell the GP to try another one or do a swab test for the specific bacteria present.tcxx
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Date: 26.08.2010
From: Sally

Subject: Re: blue badge

Hi Kay, I will. Got to phone the specialist nurse tomorrow, she was talking about upping my oral steroids and that might help. I think I've got flu.
Sorry to hear about your feet. What are you on for it?
xx
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Date: 26.08.2010
From: KayJay

Subject: Re: blue badge

They are trying me on Hydroxycholroquine next review will be in October then I will have been on it for 6 months. He said if no improvement I will have to have a full body Isotope scan ? Don't know if it's because I'm Diabetic or what but they seem very reluctant to try anything else, cant have Steroids because I'm Diabetic. Must say though havn't been having any major hand/finger pain lately it's just my wrist and feet that give me jip. Hope you feel better soon xx
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Date: 26.08.2010
From: Sally

Subject: Re: blue badge

Thanks. You too. What do they hope to do with an Isotope scan? Never heard of one before. Isn't this illness awful? I just can't cope with it right now.
xx
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Date: 27.08.2010
From: Jake

Subject: Re: blue badge

I Had the scan its not to bad at all. you get injected with radioactive stuff and you wait 2-3 hrs then they scan and check as it courses through the body.
mine showed alot of action at the painful joints, it look abit like the medecine boxes were they show inflamation in red through the body.
you cant go near a pregnant/bfeeding woman or a new born for 48hrs, but thats about it. its nothing at all and it confirms things normal xrays dont.
for me it was almost a relief, you get the impression the doctor doesnt belive you sometimes or you feel you are whinging too much, this scan proves to you and the world that its no physcalogical.
my father is on kidney dialysis at the moment and belive me guys we got to be happy and stronger, just remember there are people out there in worse situations.
just my views i guess and thats how i keep going.
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Date: 27.08.2010
From: Sally

Subject: Re: blue badge

Maybe your circumstances are different from mine Jake. Knowing there are people worse off than me is no consolation, it just makes me sad that anyone has to suffer.
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Date: 27.08.2010
From: Sally

Subject: Re: blue badge

Just spoke to my rheumy nurse who was surprised I didn't get it and is going to write a strong letter for me. I'll get there in the end but it's so boring to have to challenge every little thing.
xx
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Date: 27.08.2010
From: Shirley

Subject: Re: blue badge

Hi Sally, Good for you, I hope it gets sorted soon. I've been thinking of you all morning wondering what I can say to make you feel better as I know what its like when you feel totally drained and down. I don't have any magic words I'm afraid but thank you for being so honest and sharing your feelings. You've certainly helped me although you may not know it and I do hope things brighten up for you soon.
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Date: 27.08.2010
From: JILL

Subject: Re: blue badge

welcome Jake, send lover to your dad from all of us, U r so right, there r so many people far worse off than ourselves....that keeps me grounded...stay well x

SALLY x

Canbt beleive ya been refused whe u get DLA....its diabloical, I think there is some Human error going on here, U msut challenge this ok....get gp behind u, he shld be the one that gets u this bb ok.....let us know how u get on xxx
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Date: 27.08.2010
From: Sally

Subject: Re: blue badge

Thanks so much Shirley for your very kind message. It's support from all of you that is helping me through this and thanks.

Jill, where have you been? :) Missed ya! You have to get high mobility rate to automatically bet bb. I don't have that. My rheumy nurse was very nice and is sending me a letter - she says she writes dozens so hope it works. How are you?
xx
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Date: 27.08.2010
From: Jill

Subject: Re: blue badge

Sally ive been very ill, had gall bladder removed in April, but prior to that, have Gastritis(Inflamed Stomach Lining) still causing me probs, and found out approx 6 weeks ago, that I have Pernicious Anemia, I thought I was dying, so so so weak......so now I take B12 jabs for life, every ten weeks, its something to do with yet another Immune disoorder in the gut!.....so i havnt really been on much, sorry, missed u too, im back, pop in now and then, i get tired so much, anyway hope U get the BB, and U tell them your Mobility is crap ok, that u r in pain when U walk, im sure your nurse will sort it out for u xx
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Date: 27.08.2010
From: Sally

Subject: Re: blue badge

Sorry to hear how rotten you have been feeling.
It's hard when you constantly have a problem of one sort or another. I find it v difficult at times. I didn't post for ages too, just too fed up but really nice to get some support from everyone. In bed for fourth day running with chest infection. Can't seem to get rid of it and am scared I will get pneumonia - had it once before and it was dreadful. So am trying to be good and rest up. Keep chatting to friends on the phone but really should sleep a bit more!
lovely to chat again. Take care.
xx
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