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Date: 03.02.2010
From: bsk

Subject: hello Jill

So good to have you back, not the same without your wit and humour! I am not too bad though have painful wrists and ankles and had to go up on steroids but they're still not doing their job. Been on mtx for a few weeks now with a break for 2 weeks when got a chest infection so delaying it kicking in. I don't like my rheumy nurse very much, patronises me and tells me everything is to do with something it's not (if you know what I mean?) Am more comfortable talking to my gp, who is fantastic. So am hanging around at home at the mo, trying to amuse myself! Going to din dins with friends tonight and looking forward to that. How are you coping with your bad neck? I read about your amazing mattress thing - wish I could have got one for my Mum as she had such trouble getting in and out of bed. I feel very sad as am finding out through my own illness all the things that could of helped her and didn't. Lousy council in mid-Devon messed her around and only offered things like handrails when she needed wheelchair access to the house, took a year to put her bathroom in (she died a week after it was done) etc. I keep reading about stuff that would have helped her and she wasn't offered any of it. My parents were not well off either. I think she should have had a personal budget to pay for some care, god knows she needed it. My dad did his best but he is in his 80's. Sorry to moan but it does upset me a lot.
sally
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Date: 03.02.2010
From: Jill

Subject: Re: hello Jill

Hi Sally....ya known what....U did all U cld with the info that was given to u at that time....so dont u feel bad....Of course its soooo sad ya lovely Mum didnt get those adaptations that she needed so bad, but ya know what Sal, I only just found out about the pillow Riser ive got, appparently they have been put for years, but beecos they r so costly, some OT wont mention them.....I spoke to my OT other day, shes been brill, told her about my diabled best m8(who recently got wet room) anyway, she cld do with the Pillow riser too, they only offered her a grab rail by her bed......My ot siad, that a person MUST get across to the OT that they cant get IN or OUT of bed....im sure u told your OT about ya Mum, but mb she didnt listen...rotten I know.....since being on this forum, ive learnt a lot too.....I could have done with one when I had my first spine op.....I only got offered Methtrexate just over two years ago, and enbrel a year ago, so u c, the NHS do NOT get across to us some of the things we deserve.......that is Y, I will always pass on any info that just mite help someone....ive had to learn thehard way Sally, ive had thos prob way over 20 years, but got worse from 2002.....I took it upon myself to ring the OT, i got the support I needed from a very good OT...the Hosp wont do things for us, so I self refered.....think it mite depend on the local area budgets??? my neck has settled down now, having MRI tomoz , but wont get results for 2 weeks....my spine op has been delayed, until he sees my neck results of MRI.....anyway, u stay positive, stay strong, and im always here for u, we all are.....take care (((((HUGS 4 u)))))xx
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Date: 03.02.2010
From: bsk

Subject: Re: hello Jill

Jill thanks so much. I know you are right, I did do the best with the info I had at the time. It's just that life was such a struggle for her and just wanted to make things easier. Mum's OT was rubbish, I wasn't there when she came but she gave a really inadequate response to mum's severe disability. I think the budget in Devon was all used up, lots of old peeps there! Know it can be the same with nhs. You have to fight for things sometimes. Also, Mum was stubborn and refused some things, not even sure what :) cos she wouldn't tell me everything. I rang social services for myself 4 weeks ago, they said I was urgent case but have heard zilch! Just looking on forums has helped me a lot and am grateful for that. Know we don't have gift of hindsight but wish it was so. Glad your neck is better, good luck with the scan tom. Thanks for being there :)
Sally xx
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Date: 03.02.2010
From: Jill

Subject: Re: hello Jill

Sally.....ring them again!! tomoz!! ring your local council, sod social services, ask for the Occupational therapist dept.....they will talk over phone with u, send u forms, (not big one) and then they ring u back to make an appointment.....brilliant, that was how I did it.....thanks for ya kind words, u stay well too x
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Date: 03.02.2010
From: bsk

Subject: Re: hello Jill

I will, thanks. I think I did speak to OT, know there is a 2month waiting list in islington but will try. Having probs turning the shower on and getting in and out of bath and stuff like that.
Thanks for support. xx
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Date: 07.02.2010
From: Jill

Subject: Re: hello Jill

Sally hi, know nthat is quite a wait, but its better to have that, than not do a thing..u deserve that help, they take Hygiene very seriously, so once u get your visit, it doesnt take long to get the addaptions....lol I use to have a m8 live in Islington.....Im from saf london Innit!...born in croydon, lived stockwell, now live in East Sussex....love being near the sea, bout 10 miles away ...tc x
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Date: 07.02.2010
From: Sally

Subject: Re: hello Jill

Hi Jill, I can wait, though am bad today. I would love to live near the sea, one of my dreams is to get out of Islington! Though there could be worse places to live in London!
xx
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Date: 07.02.2010
From: J

Subject: Re: hello Jill

yea sally ya right, after i got married, we kept visiting Hastings(some ppl hate hastings) but there is more to hastings than the sea front, its beautiful up on the cliffs,lots of countryside too, amazing,we decided be cheaper to live here, so thats what we did....love it here, its close to Brighton, fab shops there, and I use to go clubbing there in my hay day lol....being by the sea makes me feeel alive and feels sooooo spacious,cities r too closed in for me, lived in them until 26......try rest up as much as u feel is good for u, eat well, plenty of water.....lots love J
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Date: 07.02.2010
From: sally

Subject: Re: hello Jill

I've got friends in Hastings. It's a great place to live, somewhere i would consider if I left London. It's got the best of both worlds in my view. Have been resting up, re-reading Cancer Ward by Solzhenitsyn, first read it as a teenager and wondered if it still stood up as a great book. It does but a bit depressing lol!
speak soon.
xx
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Date: 07.02.2010
From: Jill

Subject: Re: hello Jill

Go for it then, great that u have freinds in hastings, WHAT U WAITING FOR? LOLOLOL...u only live once! u cld live say in Battle, on outskirts, not in hastings mb, some parts, like everywhere, can be run down....dont know that Book Sally, gotta be honest, My Mum died from Breast Cancer, and two years later my dad died from Brain Tumour, so cant read stufff like that, However, even tho when I get bad, I do realise how lucky I am, compared to others that are so ill and are terminal....funny tho, I love my crime books, u know murders, and forensic stuff....morose to some, but i love em....
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Date: 07.02.2010
From: sally

Subject: Re: hello Jill

Sorry Jill, didn't mean to upset you, it was thoughtless of me. I don't think I could read it if I had lost people to that terrible disease. It is more a social commentary of life in Soviet Union and is interesting from that point of view. I really love crime books too - read them all the time. I've just got on to Peter Robinson but have read a lot of American crime writers. Though I found them a bit tricky to read for a while after Mum died. I've got a couple of friends who are big fans of crime writers too. Who do you like? Always looking for something else to read! xx
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Date: 07.02.2010
From: sally

Subject: Re: hello Jill

J, double sorry, am really rubbish today at communicating. Wanted to say in last post sorry about your Mum and Dad. Must have been hard to lose them so close together and both from cancer too. I know how hard I've found my mother's death. Nothing prepares you for it. I also agree with your other statement about feeling lucky not to be worse. Though sometimes it's hard to remember that though I'm not bad at all compared to some (you seem to have a lot on your plate for example!) The human spirit is an amazing thing but then so is this forum! What would we do with out it? Take care, chat soon. xx
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Date: 08.02.2010
From: Jill

Subject: Re: hello Jill

sally u dafty, u didnt upset me (((huggles 4 u)))) xx
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Date: 08.02.2010
From: sally

Subject: Re: hello Jill

I'm glad. You are too valuable to upset :)
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Date: 09.02.2010
From: Jill

Subject: Re: hello Jill

LOLOL...u make me giggle......mind u, u r right hehehahehhahehah xxx
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Date: 09.02.2010
From: Sally

Subject: Re: hello Jill

I know!!
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Date: 11.02.2010
From: J

Subject: Re: hello Jill

I know U know!...hehehehahehahehahehaeha
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