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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hello all,
I have been musing for a time about how I can do something for NRAS. They are a fantastic organisation. We haven't got spare money and with the uncontrolled lairy disease- things are often very up and down.
So I have decided to try and write a book for NRAS to profit from.
I have written a lot before and want to do it in the general up beat quirky tone of the wonky warrior blog.
I think I would like to be able to support other Mums with RA as thats what I know about the most- what are your thoughts on this?
With 1 in 3 RAers being women I think this could have a broad audience.
What do you think?
What would you want to see in the book? I am hoping to interview Mums with RA for part of it. Would you be happy to do this? I have emailed Alisa and let her know- hopefully speaking to them face to face later in September.
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 357
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Jenni, I think this is a wonderful idea, you've always been such an inspiration to so many here on the forum, and I'm sure that mums with RA would love to have the experiences of others available to them, and if written in the style of your blog would be such a positive book. I look forward to hearing more about it in due course :) BIG hugs Jo. xx 2012 Fundraising for the National Rheumatoid Arthritis Society (NRAS) http://uk.virginmoneygiving.com/RoboJo
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Absolutely fantastic idea, Jenni. With you all the way on this one.
Lots of love xxx
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 83
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Jenni
I have just read your post with interest. We have now finalised our survey for this year, which will be on the impact RA has on the family and carers so I think that this may well produce some interesting information and give us a clearer picture on what people feel is 'missing' and what they would find helpful so your post was very opportune! You are right, with so many more women affected by RA than men this area I am sure will be one which is discussed in detail. We intend to launch the survey findings at the BSR in April next year so perhaps it would be sensible to see what these are and then think about the best way forward?
Thank you for your support Jenni, it is appreciated.
Tracey
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Rank: Advanced Member  Groups: Registered
Joined: 5/12/2011 Posts: 124 Location: Wilts, nr Stonehenge
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Hi Jenni,
I think this is a FAB idea. May I suggest that along with the Mum's part you put some information/ feelings etc from a child's point of view. I know you have a teen age son, so is it poss to use his experiences. My Son was 15 when I was diagnosed and it may have helped to have something for him to relate to too.
Hope you didn't mind my suggestion.
Good luck with your fab venture
Trace xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Go for it Jenni, it will be a definite success! I always enjoy reading your blogs. Good luck  Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Great idea Jenni. Although my children were grown up by the time I developed RA I will help you all I can.
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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great idea,maybe even someone on the r/a/team can give their view on the subject good luck.
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi again Jenni,
My daughter was just 11 when I was diagnosed, I'm sure she would be happy to give you some input if you need it.
Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Jenni
What a great idea. You certainly have experience of this more than others - GOOD LUCK .
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Fab idea Jenni With all your experience and your wonderful wit and sense of humour it will be inspirational.. Good luck  xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Please can I be on the dust-cover, Jenni - draped in something see-through but tasteful?
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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The idea is for it to sell, Jean. 
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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 how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Jenni
What a wonderful idea. The books I have read on RA are all medically based and they did not tell me about the impact it would have on my family, my working life and, more importantly how I should tackle the subject with a child. What to tell and what not to tell. There are so many new people being diagnosed each day and thrown into the "pit" of RA. A lighthearted but factual book would be a god send. I would be happy to help in any way I can.
Jackie
xx
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Rank: Advanced Member
Groups: Registered
Joined: 10/21/2010
Posts: 178
Location: aberdeen
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I take my hat off to all you ladies who are raising/have raised children at the same time as coping with RA, I do not know how you have managed. Any newly diagnosed mum I am sure would welcome an entertaining but factual account of problems they may encounter, physical and emotional, how others have coped, but all in your upbeat and positive style. It might also be interesting as an appendix to gather together some of the FAQs we see on the forum, how often do you have blood tests? how often do you take folic acid? a sort of one stop shop for all your RA queries as well as maybe links to useful websites.
good luck with this jenni xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Excellent idea Jenni, there is certainly a place for something like this. Having brought up four children, including twins, three of them arrived within 16 months, I would hope the experience I've gained could provide some useful input for you. You've heard of juggling? It gets even better with three baby boys ... drop one and they all howl!!! (No, really, I didn't make a habit of dropping them but came close several times!) Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 346
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Great idea Jenni. My children were only three and five when i started with ra, so have grown up with it. I have probably said this before but they used to call it mum's 'harthritis'!
Bevxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Jenni - have you given any further thought to this book? I really think you should write it, asap - it will help so many young Mums
x
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Rank: Advanced Member  Groups: Registered
Joined: 1/29/2010 Posts: 264
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Brilliant idea Jenni, I'd also like to see it available in every RA hospital waiting room. Go for it , it will be great. Sheila
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