Hey all, introduction to me.
Posted 18 June 2011 - 09:37 AM
Posted 18 June 2011 - 10:27 AM
Welcome to these forums!
I'm sorry to read that you've been diagnosed with Limited Scleroderma. I'm also a member of that club and unfortunately had lung involvement which was improved greatly by the treatment I received.
It is sometimes difficult to explain this bizarre disease to other people, especially as it can affect everyone in very different ways. Are you being dealt with by a Scleroderma specialist? This is very important as sadly many rheumatologists don't have the expertise to manage this complex disease. I've included a link to give you some information about Scleroderma specialists which I hope will be helpful to you and my good friend Robyn will no doubt be able to advise you further and also let you know about the support groups in Australia.
I'm very pleased you've found our forums, joined our community and am looking forward to reading your future posts.
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Posted 18 June 2011 - 10:51 AM
Welcome to the forums! I'm into my 4th year with diffuse scleroderma and into my 3rd year as a member of ISN! One of the best things I ever did was to join ISN, it's been life changing and I hope you find it as beneficial.
Have you had scleroderma long and how does it effect you?
Take care and keep posting.
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Posted 23 June 2011 - 09:51 PM
Welcome to our Australian forum. I have been a little remiss lately as I have been on a short holiday away from computers and phones.
Our forum has only been up and running with the ISN since November last year but already we have seen quite a few people link up and share their support and handy hints.
There is an organisation in Queensland and they have members all over the very large and sparse State of Queensland. Then again, the tropics could mean Northern Territory!
It's great that you have posted as it is not easy to cope with scleroderma on your own. I imagine that you look fine and healthy and no-one really understands the problems you are dealing with.
Please check out our Scleroderma Australia website for more information on more local support.
Look forward to hearing more from you Charly
Posted 24 June 2011 - 08:28 AM
Welcome to the Forum! I hope we'll hear from you often.
My favorite explanation of what it is like to live with scleroderma is The Spoon Theory (also known as "But you don't look sick!"). That difficulty is why it is so great to meet fellow sclerodermians, no explanations needed!
Many, many years ago when I met my first Australian, I thought all of Australia was tropical! Just the other day I got an email from my friend with the mention that it was snowing in Orange and Bathurst and really cold in Canberra. I still find that hard to picture.
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Posted 24 June 2011 - 10:52 AM
Welcome! I am THRILLED that you have found our awesome family, albeit the result of Limited/CREST brought you to seek out information. I want to say that we are a Family here and have many commonalites, you will find.
Even though each of us has varied chronic illnesses that may overlap one another, we stand united in our caring support of one another
Oftentimes, you will find those of us who have (shared) experiences on these forums and the friendships that can come about are WONDERFUL !
As you mentioned...who knows better than those who also have like-diseases?
I also was diagnosed with Limited/(the REST of CREST), only my doctors are teetering between it and Diffuse! At any rate, I first began displaying symptoms in 1991 and 4 years later, began receiving diagnoses.
Dispite my many chronic illnesses, my doctors and I have been able to manage them quite well, so I count myself very fortunate.
Please feel free to peruse any and all medical information available on this site, but give yourself time to process/digest what you read.
Post as often as you please, as you get to know folks here, you'll find someone here at any hour of the day AND night.
If you have never chatted in a chat room, you're in for a TREAT! Even though we (as members) are welcome to chat in there anytime, you can also find scheduled hosted chats on Sundays, Tuesdays, Wednesdays and Fridays! For the times, there are banners at the top (in green that announce upcoming chats)!
Posted 29 June 2011 - 06:41 PM
Welcome. I hope the warmer climate up north helps the hands a bit. Down south it is getting pretty cold, but the thermoskin gloves make a huge difference. Mind you, I have friends in Darwin who say they have just had temperatures under 10 degrees. Outrageous!
Welcome to the family. I am a newbie also but am finding the opportunity to post on the forum really beneficial.
I was diagnosed with diffuse scleroderma around 3 months ago after 6 months of hand swelling and joint pain. The skin is getting thicker as I am waiting for the Methotrexate to kick in. Hopefully I will be seeing some slowing down in the next little while.
Lots of positive thoughts heading your way.