Posted 18 November 2009 - 10:13 PM
I stumbled upon your site last night while looking up some things that had come up at my latest rheumatology apppointment yesterday morning.
I never knew that there was a group in the UK. I used to be a member of an international MSN group that seemed to 'disappear' - I had some PC issues and when they were all resolved I went back online to find that MSN groups had gone and my hotmail account linked me to 'nothing'.
Its so nice to find there is a group in the UK - people I can catch up with at 'regular' times
I was finally diagnosed with Scleroderma (systemic) 11 years ago after about 3 years of 'it could be this or that' and 'take these and see what happens'.. like everyone else I have lots of niggly issues and its nice to know there are people out there just like me that know exactly what I'm talking about. Family and friends are good but they don't really 'know' how it all works.. it's confusing for me sometimes so I wouldn't like to hazard a guess at what they may think of my neverending list of aches, pains and other issues. Just the mention of heart / lung issues sends them into a panic or just a funy shade of grey. To me it's something you get used to and after this long I'm pretty much expecting something new all the time - if it doesn't happen, even better.
hope to get to know you and offer help and support wherever I can
Take care all
Posted 19 November 2009 - 04:13 AM
Welcome to the Forum. We've got quite a few members in the UK and not only do we have a 'special' Forum, we also have a real-time chat room open on Wednesdays (7pm your time). Perhaps one of the best resources we have for the folks on the right side of the pond is Amanda Thorpe, who is a trustee and the webmaster for the UK Scleroderma Society. I'm sure she'll be welcoming you herself.
It is great having so many people in one place that can relate to just about every issue that crops up without flinching or getting dreadfully upset. Having someone say "Congratulations!" (and mean it) when you mention you are celebrating the 3rd anniversary of your diagnosis is absolutely priceless! Who else but one of us would do that?
Again, welcome! We're glad to meet you.
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Posted 19 November 2009 - 11:01 AM
Welcome to the forum, it's great when a newbie joins but even better when they've had 11 long years, despite sclero's best efforts! In another recent post I listed out how many "old timers" I knew to try and reassure them they weren't necessarily a death's door and now I can add you to the list!
I am into year 2 of diffuse systemic sclerosis and it's jolly well worse than the first even though my mobility is better. How does that work?
I know what you mean about talking to relatives about internal issues, I should be having a long overdue ECG next week and whenever I mention it to my mother her eyes get all wide and scary, my husband is very calm thankfully as is my sister but none of them gets it...so I come here where everyone knows what I am on about!
I'm not aware of the sclero group you refer to but I do know MSN suddenly closed a lot of its online groups.
I look forward to hearing more from you and take care.
Jeannie, congratulations and celebrations!!!
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Posted 20 November 2009 - 09:50 AM
A warm welcome to this very helpful & informative forum from another UK sufferer.
I have only just been recently diagnosed so it's good to hear from someone who has been able to cope with Scleroderma for a number of years.
Kind regards x
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Posted 21 November 2009 - 06:49 AM
I'm really glad you found us, just as I was also very pleased when I found this site, too. I'm now approaching my first anniversary with sclero, but it is on top of 6 other autoimmune conditions, so the last in a long list. I'm still a beginner at understanding it all, so its really nice to meet someone new who has had sclero for a long time.
Hope to see you posting again soon.
Posted 22 November 2009 - 07:31 AM
Welcome from another UK sufferer. I was diagnosed 2 years ago and there certainly are a lot of things to get your head around. Everyone on the site is so supportive and it does make things easier having others understand just what you're going through.
Posted 23 November 2009 - 08:56 AM
I've had a mad weekend holiday shopping so I have only just had chance to log back in, thanks for the welcome.
You can certainly add me to that 'old timers' list Amanda. I was diagnosed 11 years ago in March so coming up for 12 years now, it has definitely been 'eventful' I'm sure you know that there are days when you ache in places you did not know you had, but as long as the good days outnumber the bad it's not too bad. My doctors are fantastic and I'm lucky enough to have a general practitioner who is pretty clued up on Sclero too. I used to have a general practitioner that used to send me to the hospital at the drop of a hat, blaming everything on the sclero but the one I have now is much more understanding and actually looks to other things before making any assumptions, she's great.
When I was first diagnosed I couldn't find a great deal of information on the condition - the only information sites I could find were so complicated you needed a degree to understand them. Places like this are fantastic for people to just chat to fellow 'suffers' and offer advice or even just a 'friendly ear'. Thanks for welcoming me onboard.