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Rank: Newbie  Groups: Registered
Joined: 11/12/2012 Posts: 7
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Hi Im Fiona and like others this is the first time Ive used any site like this, although I have in the past few days conceded to using Twitter. still trying to figure that out  I was diagnosed with Systemic Onset JIA 40 years ago at the age of 4  The past few years have been absolutely awful and having recently moved I'm hoping to get my Rheumatology treatment back on track. It isn't something that comes easily as treatments have changed so much recently and parents and then doctors were taking most of the decisions. I've been resting the past few days as my back went and Ive got an enlarged lymph node in my armpit. give it a few days and when I'm past hobbling whilst doubled up I can get myself off to the GP. Glad to have a site where i can just let off frustrations without all the sidelong glances and side shuffling  hugs
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Rank: Advanced Member  Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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[grin] Hi Fiona Welcome, nice to meet you! I can't imagine what its like to have this condition when you were you were a youngster and having parents & doctors making decisions on your behalf. Sorry to read about your back & nodes, I hope that your resting! I'm 40 years old, had ra at 34yrs old when I had my daughter. Its been an emtional rollacoaster learning to be a mum but adapting at the same time with pain and ra. Being a mum is magical! I try to laugh, smile as much as I can!  Yesterday at the school parents were invited to come and do craft with their children - we had to cut circles with a plate on green card - cut in half and glued sep. Same with white card (smaller plate) to make x4 xmas trees with snow (white card) on top! It was fun, gloopy with prick stick!!!!! And my daughter went on over drive with xmas stickers to decorate!!!! I had a big day with orthopedic surgeon late pm for my knee. What's your twitter address? I joined twitter earlier this year - mine is @campingdude. Many ra peeps and staff from nras are on twitter! I follow queen & camilla (its a parady/joke one) very funny! And followinga joke pensioner - its funny also! Take care. Hugs Jane Xxx
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Rank: Advanced Member  Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Fiona - glad you've found us. We're a friendly bunch here. I'm 54 and only diagnosed earlier this year, so I can't imagine what it must've been like to have RA for so long. My nephew's girlfriend also has JIA although she doesn't talk about it much. As you say treatments have changed a lot in 40 years, and I gather that the new NICE guidelines have only been around for a few years so there's a lot of variation in how each patient progresses. I'm so sorry to hear that you've got extra problems just recently - good luck getting sorted out with a new hospital. It's very unsettling to have to get to know a new set of doctors and nurses and find out how they do things in their trust. I'm at Torbay, and I've found them very helpful. What area are you in? Good luck especially with seeing your GP - I've learnt that they know very little about RA and us patients have to be very assertive to get what we need. Keep posting - it's lovely to hear from you - Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Newbie Groups: Registered
Joined: 11/12/2012 Posts: 7
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Lovely to get some friendly responses from people. Ive been rather isolated for quite a while. Jane Im so glad your daughter gives you a focus other than the RA. I bet she does her fair share to keep you smiling and active  . Ill certainly add you to my twitter account. My address is @FioKrst. Ive managed to add a few people but am still unsure of how to utilise the site properly so please look out for my twitter. Sylvia I dont know a lot about the Nice guidelines but am starting to look at them. House of Lords last night on the TV werent that complimentary about them tho (Slightly different subject about obesity at work but drew in the implications of medication and disability, to my way of thinking anyway)  Although over the years I've had the full range of responses to the Arthritis from "Oh youre RF negative and showing no inflammation Are you sure its RA" to "You really need to get used to the fact that youll probably be stuck with the wheelchair for life" Doctors and their teams in Somerset and Plymouth where Ive lived before have provided excellent treatment and Ive tended to let them just get on with it as I always felt included in their analysis of the situation but whilst Ive been in Wales the recent doctors have seemed reluctant to actually talk to me about my condition. They seem to to think JIA is the same as RA but when Im trying to insist that there is a problem they either look at me as being someone who has done too much looking up on the internet without the actual experience or someone who is being over sensitive and demanding attention.  I try to do it from a combined perspective. (Large numbers of patients few specialists and different aspects of experience etc) still cant connect with the specialist. I wasnt even given contact details for his rheumy nurse or secretary until I was trying to transfer  Ive got a last appointment with the current specialist at the end of the month and am hoping he will refer me to a new team in Haverfordwest. The new surgery have advised me that is the easiest and most efficient way of transferring. Hey ho Fingers crossed it will be better with the new team  Hugs ps. Im off to try and figure out how to put a foto on my username 
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Rank: Newbie Groups: Registered
Joined: 11/12/2012 Posts: 7
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Jane how do I reach you on twitter? When I've searched for campingdude Im just getting campingdude101 a tony something or other. Other than that just do a search for@FioKrst and you should be able to tweet me.
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Rank: Advanced Member Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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 Hiya Fiona Just found you on twitter - I tweet you in a little while! I Follow lovely people on twitter, love the parady ones - like queen and gives breaking news as well! Found a rude one 50sheds of grey - is aimed at men (so, not following)!! Take care Jane Xxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Fiona I am Barbara, just want to say welcome to the site. It must have been terrible growing up with JIA, its hard enough having RA as an adult. I was diagnosed in July 2009 after over a year of problems I hope you get your treatment back on track soon, and I'll look for you on Twitter!!! thats if I can sign in, most of the time I must be doing something wrong!!! You'll find lots of information on here, I hope all goes well for you  BARBARA
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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footnote!!1 Ive managed to log onto Twitter lol!! I am @Renette77  BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
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Hi Fiona welcome I'm Sophie 38
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Fiona,
welcome aboard.
i must be honest as before i developed RA in June 2010 ( well diagnosed then ) i always associated the condition with Children i.e. JIA. having seen it on television programme's such as when they film in hospitals, and my heart went out to them .. well still does.
it's beyond my comprehension how you grow up with this disease, and trying to lead a normal life.
i found it scary enough at 56 as i was then,
and to take some powerful drugs as well, i go into meltdown if i have to start new meds.
i hope you get great treatment at your new hospital, i know when i joined NRAS i went to a meeting at my hospital and was told how treatment or lack of it varies from area to area.
so i count myself lucky that i have great care and regular appointments where i am.
Best Wishes and do keep posting,
Suzanne
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Rank: Advanced Member  Groups: Registered
Joined: 5/7/2012 Posts: 149 Location: S E London
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Hi Fiona,
I'm Mary, am 53 and was diagnosed in the early part of this year.
I don't do twitter but hope you all 'find' one another.
Sorry you've had problems recently, lets hope your new team include you in decision making.
All the best.
Mary
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Rank: Advanced Member Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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Hi Barbara, I copied and past your name on twitter! Jane
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Fiona - good luck getting sorted out with your new hospital team in Wales - as the crow flies Wales isn't that far from where I live in Devon, but it's a long,long way by road! I know this well as my girls sometimes travel to equestrian events there and it's a journey that seems to go on forever, along lots of very small roads!! I haven't done the trip for a couple of years as cost of diesel is getting too expensive, which is a great shame because it's nice location. Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hi My name is Paula and I just wanted to welcome you to the forum. I've had RA for just over 4 years now and I am about to start on anti tnf's. See you do twitter, my daughter keeps telling me to have a go. Don't really want to start, I can spend along time on the internet without having another interest, mind you it might be a bit interesting following people and seeing what they are up to. My husband tells me I am nosey, but I always say.....I am not nosey, I've just got a thirst for knowledge... Keep posting. Paula x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Fiona, and welcome to the forum. It must have been hard growing up alongside JIA with all its problems - I was diagnosed almost seven years ago at 55, and found it hard enough! I don`t "tweet" I`m afraid, but usually look on here a few times a week. Take care, Kathleen x
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