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Date: 18.04.2005
From: Trina

Subject: Welcome to the Arthritis Forum Message Board

Hi All!
Well, as you can see the website is now up and running - not loads to see at the moment but it is somewhere to start.

We could really do with a few more personal stories, so if you fancy having a go that would be great. Just type or copy and past your story into the box on the Personal Stories page and press the send button. If you have a picture you would like to include you can attach it in an email to info@arthritisforum.org.uk

Please feel free to use this space however you want - I'd like to see people using this message board to keep in touch with all the people in our group and I'd like to invite anyone with arthritis to drop in and say hi from time to time.

This site is a bit of a blank canvas at the moment so if anyone from our group would like to get involved running the site or gathering material for it please get in touch - you can email me directly via the link on the front page.

Anyway, don't forget our next meeting is 28 April at the Hare & Hounds 12 noon. Dr. Viner and a colleague will probably be joining us to talk about how we can help the rheumatology dept. at Torbay hospital.

See you there..
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Date: 18.04.2005
From: Cherie Cliff

Subject: Re: Welcome to the Arthritis Forum Message Board

Hi Trina, I've done it at last! Wow i'm impressed - what a great start. I'll post something on the site tomorrow if that's ok.

Talk soon.

Love cherie.
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Date: 18.04.2005
From: Trina

Subject: Re: Welcome to the Arthritis Forum Message Board

Hi Cherie,

Hooray! You made it onto the site - Glad it works for on other people's machines too...

All I need now from you is you personal story. Not that I'm nagging or anything.
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Date: 20.04.2005
From: cherie cliff

Subject: Re: Welcome to the Arthritis Forum Message Board

Hi Trina,

Just to let you know I've started my personal story today - god knows how long it's going to be or how long it's going to take...

Shall I book the table at the Hairy Mutt and should I include Nick Viner & co?

Talk soon
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Date: 20.04.2005
From: Trina

Subject: Re: Welcome to the Arthritis Forum Message Board

Hi Cherie,

Can't wait to read your story - make it long enough and we could try to get it published!

It would probably be a good idea to book a table - I guess we should just estimate how many people will turn up and say to the pub that some will be eating and others will only wants drinks.

I'll ring you...

Hope you are feeling better.
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Date: 21.04.2005
From: cherie cliff

Subject: Re: Welcome to the Arthritis Forum Message Board

Hi Trina,

God it's difficult writing my story but probably theraputic. I'm having to be selective tho' else everyone will be in tears! (including me).

Will book the table as you said.

Talk later...

Oh feeling better - thank you.
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Date: 19.05.2005
From: nunsworth

Subject: Re: Welcome to the Arthritis Forum Message Board

Hello Trina What do you mean by personol story how and when i started with PMR & RA or treatment i have recevied how how cope what? N Unsworth
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Date: 19.05.2005
From: Trina

Subject: Re: Welcome to the Arthritis Forum Message Board

Hi Nunsworth,

One of the things I thought may be of interest to people visiting this website is an archive of personal stories about what it's like to live with arthritis or related conditions day-to-day. If someone comes to the site with a particular condition they can look through the personal stories and hopefully they will be able to relate to what they read.

It would be great if you would consider writing a piece about having PMR for the personal stories section. I figured that people should write in what ever way feels right to them. Some people prefer to write a personal history about where and when they got their condition etc. starting with when they were diagnosed and telling the story up to the present day. Other people may prefer to consentrate on one part of their experience eg what it's like adjusting to the side effects of steroids etc. Or some people may want to write a poem. I know it can be difficult doing this - quite a few people have said they found it very emotional seeing it all there on the page.

If you - or anyone else reading this - would like to have a go please go to the personal story page, read the ones already there and start typing!

Let me know if there are any questions you'd like to ask.

Great seeing you on this site - I hope you are having a good day...
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Date: 26.05.2005
From: nunsworth

Subject: Re: Welcome to the Arthritis Forum Message Board

hello Trina i have been doing a lot of thinking about personel story and yes i will have a goI spend a lot of time chatting away to four friends iv,e found as youwell know on the other site you formed. If i had not found that site that night i dont honestly know where i would be right now so if it helps your cause at all i am willing to give it a go thank you for what you started it given me a lot of hope
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Date: 27.05.2005
From: Trina

Subject: Re: Welcome to the Arthritis Forum Message Board

Hi Nunsworth,

It would be great to have a story from you! It has made a real difference to me hearing about your new-found friendships that have been made via the other site I started. It makes all the work and arguing with Arthritis Care worth while... They wanted me to take the message board off the site and I really had to stand my ground - but now they're seeing that it can be of benefit to people so will hopefully include a message board in their new UK site which should be ready for the new year.

Thanks for visiting this new site. It takes time before sites start showing up in search engines so the more people who come by make the process quicker.

I'll look forward to reading your story.
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Date: 27.05.2005
From: Dale Milanese

Subject: Re: Welcome to the Arthritis Forum Message Board

Hi Trina:
Every day when I read my e-mail, I thank you for what you started. I have found friends that I never would have without that site.
There is Pat, Inez, Norma, Barbara, Anne and Angela. Wow I made new friends all in one week.
We talk about a lot of things and send pictures and jokes and also talk about our PMR.
I am so happy to get home from work and read my mail. I am learning about other parts of the world.
What more can I say. Thank you, Thank you.
Much love and good wishes go your way.
Dale
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Date: 02.06.2005
From: norma jean unsworth

Subject: Re: Welcome to the Arthritis Forum Message Board

Hello Trina I do check the site both this and the one you started Arthritis care I find that not so many people have visited and wonder did we by we Pat Inez Dale & Myself put others off we did kinda take over. But i can only speak for myself i needed the comfort and company of others that understood how i felt it was quite by acccident i found it and thank god i did i was that night at the end of my wits I have lots of family & friends but only one who understands how i feel and this is because she has lupas but still manages to work 4 days a week so i only see her when she is not working Through the site you started i found friends i can talk to any time doing this helps take my mind of things mainly the pain I am not as lucky as most the predisone didnt work for me as didnt anything else they tried and are trying you may wonder why i am telling you this Its because i am still debating with myself as to MY STORY i am afraid of giving anyone who reads it negative thoughts about medication as the amount i have tried none have done me any good but thats not to say they wont help others I shall wait and see what you think b4 starting and check tommorow Many Thanks for both sites Norma
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Date: 02.06.2005
From: nunsworth

Subject: Re: Welcome to the Arthritis Forum Message Board

hello cheri i have read your story i wont say im sorry as its not pity any of us are after is it i to have spent time in a wheel chair but i now have an electric scooter people dont me the looks comments i used to get in the chair like what have you been doing why are you in that i got fed up of explaining and the oh i am sorry I now get looks that say are you kidding do you need that or are a fat lazy so and so or some looks that say im sure i need that more than her I am 58 and where i live comparativly yunger than most people that use them but it gets me out of the house on my own so i tend to not bother.I am debateing withmyself over My story and waiting for trina,s advice i did enjoy reading yours it gives a good insight on how other people feel about themselves,Its now 2-45 i should go and make myself sleep if only so i will say goodnight and wish you well Norma
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Date: 02.06.2005
From: Trina

Subject: Re: Welcome to the Arthritis Forum Message Board

Hi Norma,
I don't think you guys have taken over at all. It's great that you have found the message board so useful, and I've seen how helpful you have been to new people posting so don't feel you can't post as often as you like.

About the my story thing...
Cherie and I had quite a chat about exactly the kind of things you have said here. We were worried about how we would come across to other people and thought long and hard about whether or not we should keep it positive and not say negative things in case we put people off trying drugs etc. but in the end we decided that it was best to tell it like it is. We felt that we wanted people to say exactly what they wanted (if they want to be positive that's fine too), so that people can have a space to be open and honest about how it is for them. If we all put a positive spin on everything it may make people think 'what's wrong with me, I feel terrible all the time'. So all I can say is write it from the heart and you can't really go wrong. I'd like to read something that is about you and your life warts and all!

Let me know if there are any questions you want to ask...
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Date: 11.07.2005
From: Gina

Subject: Re: Welcome to the Arthritis Forum Message Board

Just like to say congratulations to you all. It is hear nice to hear from people who are honest in what they have gone through or experiencing its take some guts to write what going through so other people might be able to gain some POSTIVELY out of it.It was everyone in Challenging Arthritis that I met gave me the inspirational to move on with my life instead of moping around being idle. So just to let you know the hard work in motivating me to see more too life has paid off. Just to say THANK YOU
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Date: 10.08.2005
From: Randy N.

Subject: Re: Welcome to the Arthritis Forum Message Board

Thank you, Trina for yours and your crew's wonderful idea of a website!!
Was recently diagnosed as having arthritis of the neck and spine? Don't know how to react to this, am "still in limbo" and don't quite know what to say or ask except help I'm brand new
Again, Thanks for the website.
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Date: 10.08.2005
From: cherie cliff

Subject: Re: Welcome to the Arthritis Forum Message Board

Hi everyone, just to say thank you for your comments about My Story. It is difficult to write but I did find it very theraputic - so if you can - have a go. Maybe you could write it first and then decide whether to post it on the site or not...
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Date: 28.10.2005
From: nunsworth

Subject: Re: Welcome to the Arthritis Forum Message Board

Thank Trina for your reply and again thank you for your help I will just keep the E-Mail as that is what i have done clicked on that and the site came up magic I wont leave it so long in the future
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Date: 22.02.2006
From: Debby

Subject: Re: Welcome to the Arthritis Forum Message Board

Hi Trina,
I put in a topic about Polymialgia, and now when i click on my Packaging Problems subject, I keep getting the Polymialgia one coming up instead.
Please can you tell me how I can delete the Polymialgia subject or sort this problem out?
Sorry to be a pain
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Date: 22.02.2006
From: Trina

Subject: Re: Welcome to the Arthritis Forum Message Board

Hi Debby,

Sorry my fault.. I've put it right now and it should work properly again.
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