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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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More of the latter than the former !
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 64 Location: Sussex
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It is a queer thing this disease name thing, when I tell people I have lupus they take a quick step back in case they are going to catch it!!!!!!!!
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Thats the key I think more understanding of these diseases, its true, you just dont realise what these conditions are all about until you have them or know someone who has it...
When I was a student I did a research paper on "living with ra" and was staggered at its impact on peoples lives...little did I know then that Id end up with it and lupus...strange world.
Ellie x
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Rank: Advanced Member  Groups: Registered
Joined: 12/19/2009 Posts: 49 Location: Bearsden, glasgow
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I have had RA for just over 3 yrs ( diagnosed). Last night i was c/o pains in shoulders/hands/elbow/wrists to Silvano (other half). I am as stiff as a board just now, all hunched up to try stop the pain. What does Silvano tell me..................... its the cold weather that causes it. I then explained the difference between Arthritis and Rheumatoid Arthritis, for the millionth time. jenny  xxxx
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 854
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Jenny hello! Nice to see you posting! My husband is just the same. Pays lip service to what I say but has no understanding of it even after 10 years. He still trots out the same old rubbish ie it 'll be the heat/cold/whatever! Grrrrr!
How is Glasgow? Lots of snow? Cold and driech I bet?
Take care,
Eleanor x
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Rank: Advanced Member Groups: Registered
Joined: 12/19/2009 Posts: 49 Location: Bearsden, glasgow
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Hi Eleanor, Glasgow is absolutely freezing and still all covered in snow. I stay in the house most days ( due to cataract and flare-up), but i need to venture out this afternoon to go hospital for some physio. Hopefully by the weekend i will feel like a new woman with my new "eye"  and movable arms and hands  . jenny xxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Jenny, Icy, cold, and nasty flare-up, hope you get better soon - is it you in the photo?, you look too young to have a cataract  Good luck with the treatment and that it goes well. Re name of the illness I like the sound of " Systemic Rheumatic Immune Disease" Does anyone know of a celebrity with RA, perhaps we could approach one to help raise awareness of the disease? Love, Barbara XXXXX
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Both Juliet Caplin (Pearl from Sumer Wine) and Ainsley Herriot are RA suffers and they both support NRAS. They are both mentioned on the NRAS web site - there's a picture of Juliet with Ailsa. Maybe you could contact Ailsa?
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Rank: Member  Groups: Registered
Joined: 12/4/2009 Posts: 28
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Sorry to go AWOL in the middle of the thread, but what an interesting discussion! I take Jenni's point about the inflammatory arthritis umbrella, and Amanda's about changing the name of the charity - that's what made me think the stationery ordering person would faint when they saw the thread, at the thought of changing the letterhead. But I think a lot of us are unhappy with the name of the disease. I'm surprised how many consultants use the term "rheumatoid disease" - it's made me think it would be OK for me to call it that when I tell people what I have.
I'm sure NRAS have had a look at the posts but I'll send them a mail to see what their vews on name changes are before doing anything else.
Meanwhile, Happy New Year to all from a sleety but snow-free Eastbourne.
Helen
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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Im sure there must be more affected and also there are bound to be other celebrities who have relatives or loved ones affected..... I think Ainsley is amazing - really inspirational with his "bring it on... attitude" i didnt realise it was RA he had..., i will have to read more about Juliet - i only know of her as Pearl! i think people take on board what they want and dont always listen or process information... i almost always mention immune disease but ive then had people ask me if its related to aids....  i do think its important to talk about it tho' especially at work. I kept it quite quiet for a long time but i now talk about it much more nowadays. I think we definitely should "raise the profile" of RA or whatever we call it 
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Doesn't Max Clifford's daughter have severe RA?
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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I KNOW I've got a VERY wierd sense of humour, but have just laughed at the thought people of thinking we have aids. At least they would then take us more seriously!! They certainly wouldn't say they had "a touch of that" in their big toe!
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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That made me laugh Jean. I've been to the park with my friend and the kids today and we bumped in to one of the other mums from school. I remebered I'd told her I has RA when I was really struggling back in July and she said 'how are your toes now Julie, are they better'. Wasn't limping so much today in my big wellies so just said yes thanks.
Julie
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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If we didn't laugh, Julie, we'd all end up going crazy!
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Rank: Advanced Member Groups: Registered
Joined: 12/19/2009 Posts: 49 Location: Bearsden, glasgow
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Hi Barbara, thats me with 2 of my 3 grandchildren in the photo. The reason for the early cataract is due to the 5/6 steroid injections i got within 2 yrs, they brought on the cataract with avengence apparently.
Bob Mortimer also has RA, i didnt realise Ainsley Harriot had RA.
jenny
xxxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 872
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Max Clifford... as in PR Guru? Maybe HE is the man to have on board to raise the profile even more....
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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People often ask me how are my hands now, as if I don't have it anywhere else! I suppose that was the most visible.
Max Clifford would be the person to have on board.
Lyn
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 872
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Hello Jenny - i like your piccie by the way,
...can you remind me who Bob Mortimer is, please - i think i know who is but not quite sure.....
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Rank: Advanced Member Groups: Registered
Joined: 12/19/2009 Posts: 49 Location: Bearsden, glasgow
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Thanx Liz, Bob Mortimer is the other half of Vic Reeves ( comedy duo) Shooting Star was the name of the programe.
jenny
xxxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Yes, Max Cliford is the PR man and here is an article about his daughter who has had severe RA since childhood. She is exactly the same age as me so I grew up hearing all about her and tried to follow her journey as much as possible.... http://www.dailymail.co....d-arthritis-suffer.html
Love, Amanda PS; I do think he would be an excellent person to have on board for very obvious reasons!
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 351
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Louise Clifford's RA story is on NRAS too. Carol
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