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Date: 03.08.2009
From: vicky

Subject: Questions n a lil update!

Hiya,

Been a while since i came on. Unfortunatly im still not having any kind of medication. But the hot weather was amazing for me (i swear by heat treatment!!) Although now the pain is setting back in espically in my wrists, im seeing my consultant on the 18th august.

But i have a few questions:

1) Is weight lost anything todo with RA? I am under 6stone and have a low BMI

2) Does anyone have mobility sector of DLA?

3) Does RA make have effects on your memory?

4) Do you get more fatigue in autum/winter time? I have been finding my fatigue setting in again

5) Is it possible to work or study? I am desperate todo somthing but my doctors are saying no at the moment and im absolutly bored stiff i was training to be a teacher until the RA got the better of me and i was forced to leave because of pain and fatigue!

Thank you In Advance
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Date: 03.08.2009
From: Lynne

Subject: Re: Questions n a lil update!

Hi vicky I've had RA for twenty years. It would help you tremendously to get the right meds . If thet get your RA under control there is no reason you can't study I did a advanced diploma course five years ago. Not going to say it wasn't hard it was and tireing. I also had an understanding tutor who would give me extra time to submit assignments, when I was having a flare up.
The weight thing I don't think has to do with RA. Could be more to do with the pain and the depression it could cause... Maybe?
Fatigue is a great part of any arthritis unfortunatly.. Not too much you can do about that apart from listen to what your body is telling you. And don't do too much. Different for all l of
us
memory is something else we nearly all seem to relate too. We've put some posts on here about it if you wish to scroll through
re DLA I get the highest increment on the mobility and personal care. Took a while though. Got turned down a few times but kept resubmitting
hope your specialist comes through for you and that you get the treatment you need. A good thing to do is to write down the questions you want to ask him cos when you get there they can overpower you with there medical questions. And your left unsure what it all meant
good luck to you and hope this helps. Please get back to us if you need any help take care
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Date: 03.08.2009
From: Lynne

Subject: Re: Questions n a lil update!

Just had another though vicky re weight loss I seem to remember in the begining when I first got it . I was in so much pain I couldn't bo bothered to cook or prepare food cos it hurt so much. I did loose some weight then. Then the rheumy got the pain undet control and I could manage to cook and prepare food again
now I'm a stone overweight no winning lolololol
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Date: 03.08.2009
From: vicky

Subject: Re: Questions n a lil update!

Hi Lynne,

Thank you for your reply. My problem with medz is i also have congential heart diesase (sp) basically called Fallots of Techtrology and so the medz conflict with it n as im also under investigation for possible surgery for my heart i crnt be started on ne drugs incase i need drugs for my heart (heart specialist sees there drugs more important! which doesnt help me!) So although i n consultant want to help me its impossible with my cardiologist saying yes (i have 2 cardiologist & one rhmertologist & asthma nurse) n i am still getting no ware i cud just cry.

Im really pleased you have managed to get a qualification i wish i cud finish my degree but i have no energy n find it hard todo much :(

Your right i crnt cook ect my partner has to cook and prepare all our meals and has had to leave work to look after me because i crnt do much at all its so depressing, Im also on anti-depressents cuz RA came out after id lost my mum (within 2 months of loosing my mum i started getting symptoms.)

I get confuse as to what my tiredness is because of my heart and ra i take regular naps these days but im only 24 n its quite embrassing esp wen friends come rnd to see me!

I will read
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Date: 03.08.2009
From: vicky

Subject: Re: Questions n a lil update!

Hi Lynne,

Thank you for your reply. My problem with medz is i also have congential heart diesase (sp) basically called Fallots of Techtrology and so the medz conflict with it n as im also under investigation for possible surgery for my heart i crnt be started on ne drugs incase i need drugs for my heart (heart specialist sees there drugs more important! which doesnt help me!) So although i n consultant want to help me its impossible with my cardiologist saying yes (i have 2 cardiologist & one rhmertologist & asthma nurse) n i am still getting no ware i cud just cry.

Im really pleased you have managed to get a qualification i wish i cud finish my degree but i have no energy n find it hard todo much :(

Your right i crnt cook ect my partner has to cook and prepare all our meals and has had to leave work to look after me because i crnt do much at all its so depressing, Im also on anti-depressents cuz RA came out after id lost my mum (within 2 months of loosing my mum i started getting symptoms.)

I get confuse as to what my tiredness is because of my heart and ra i take regular naps these days but im only 24 n its quite embrassing esp wen friends come rnd to see me!

I will read the the memory post i can somtimes be doing somthing then suddently its completely gone n im just staring into space, another depressing factor.

DLA awarded me care middle rate but i think this is unfair ive appealed but they have lost my file and so crnt send me paperwork. I sent in my appeal form 3 weeks ago and still no paperwork from them and i had to wait nrly 14 weeks for an original decisition. How did you manage to get the decisition in the end? have you any tips?

I dread seeing my consultant because ive not been able to have a blood test because ive lost so much weigh my vains are collapsing as soon as a needle is put into my arm so i crnt give him an up-to date reading of my bloods its realli upsetting me these days cuz i just want to be health even if its just for one day i seem to be forever at the doctors or at hospital seeing one consultant or another i just want to live my life again :(

Thanks for replying again
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Date: 04.08.2009
From: val h

Subject: Re: Questions n a lil update!

hi vicky u r going through so much at the moment hang in there u will get through it must be a bit like to many cooks spoiling the broth with all those docs. not your falt about bloods more like those who should have been taking them :-( i think your heart is most important but wish they would sort it 4 u. so u can get arther under control good luck keep fighting :-)
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Date: 04.08.2009
From: Jill

Subject: Re: Questions n a lil update!

((((hugs for U vivky))) I remember u a while bk...cldnt beleive u have heart probs as well as arthritis etc.... tirednesss/fatigue is my biggest prob too...Lynnes right about the weigth loss, that happens becos we cant coook and be bothered to do a thing....take care ok

Love Jill x
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