Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

a new member and rejoicing


  • Please log in to reply
8 replies to this topic

#1 tarah

tarah

    Bronze Member

  • Members
  • PipPip
  • 12 posts
  • Location:Country Victoria, Australia

Posted 16 May 2011 - 02:19 AM

Hi all

I was diagnosed with diffuse scleroderma 4 weeks ago now and am just finding my way on the start of this journey.

I am happy to find this great resource as I agree with many others who have spoke of the isolation felt with this diagnosis. Fortunately I have only had symptoms for 7 months before being diagnosed, swift work on the medical teams behalf by all accounts.

Interestingly I suffered a bout of encephalitis 9 months ago, which left me a little vague but otherwise OK. 1 month later I started getting the hand swelling and foot pain which moved into the joints. Naturally we thought it was normal post viral inflammation until it just got worse rather than better.

I have been started on Methotrexate and low dose steroids to combat it all. Currently my organs seem to be behaving but the skin is continuing to thicken and the pain increasing. I am trying to brace myself for the pulled back look. I never thought I cared much about looks, until coming across a disease like this.

I am in the process of trying to find some links with others (like this site) as I am in country Victoria, just so I can talk to others who "get it".

Thanks again to all for your honesty and the support shown to one another.
Tara

#2 Robyn Sims

Robyn Sims

    Silver Member

  • Members
  • PipPipPipPip
  • 166 posts
  • Location:Melbourne Australia

Posted 16 May 2011 - 03:48 AM

Hi Tara,
You seem to be taking all this in extremely well. Yes, you definately were lucky to be diagnosed so quickly, especially as you live in rural Victoria.

There are many support groups around Victoria, Gippsland, Seymour, Albury/Wodonga, Bendigo, Ballarat, Geelong and Mornington/Westernport. The numbers in the groups are slowing increasing as the word is spreading.

At the moment I am in Western Australia meeting with a support group here but am so pleased you found this site. We have not been affiliated with the ISN for long but I know that people such as yourself will find it a great source of information.

I know the doctors would not have given you a prognosis, as this is not possible. There will be many others who reply to you and give you advice and support. I do not have scleroderma myself but my daughter was diagnosed twelve years ago at the age of 26 so I feel I have had a lot of experience, albiet as a mother.

If you go to the scleroderma Australia website you will find links where you can get in touch with the Victorian organisation and take it from there. In the meantime watch this space and you will be amazed at the great people who will reply.

Kindest thoughts
:emoticons-group-hug:

#3 uknlv18

uknlv18

    Silver Member

  • Members
  • PipPipPipPip
  • 155 posts

Posted 16 May 2011 - 04:33 AM

Welcome Tara, and you will find this is a great place to come and just have a 'talk' with people who have been there and done that so to speak in some form or another. Look forward to you keeping in touch and hope the new medication regime helps you!

Here's a little welcome dance to get you started.

:happy-dance:

Cheers
Jean

#4 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 16 May 2011 - 06:23 AM

Hi Tarah,

Welcome to these friendly and informative forums!

I'm very glad you've found us but sorry it's because you've been diagnosed with Diffuse Scleroderma. I'm hoping that you'll find the link I've included helpful and I've also included one to Skin Involvement as well.

As you have been diagnosed comparitively quickly, I'm assuming you're being treated by a Scleroderma specialist; this is very important as sadly many rheumatologists do not have the expertise to deal with this complex disease.

I do hope that the medication you're taking will help you and now that you've found our forums and joined our community, you'll find a wealth of help and support both here and through the support groups Robyn has given you.

Do keep posting and let us know how you're getting on. :emoticons-group-hug:

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#5 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 16 May 2011 - 08:40 AM

Hello Tara

Welcome to the forums, I was diagnosed 4 years ago and and like yourself my diagnosis was relatively quick after the onset of symptoms. Mind you by the time I saw the rheumatologist who diagnosed me I had near total skin involvement so it was a done deal.

The "pulled back look" isn't a foregone conclusion, I don't have it because I never had skin involvement on my face, however, my lips are half the size they were and my mouth smaller...some would say that's not a bad thing!!

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#6 tarah

tarah

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 12 posts
  • Location:Country Victoria, Australia

Posted 23 May 2011 - 07:15 PM

Thanks Robyn

It is so empowering to connect with people like yourself who understands how it is.

Thank you, thank you, thank you and I look forward to connecting in person with the Ballarat Support Group.

Cheers
Tara

#7 tarah

tarah

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 12 posts
  • Location:Country Victoria, Australia

Posted 23 May 2011 - 07:19 PM

Indeed.. it was a bizarre experience to have my mouth measured on my first visit to the scleroderma specialist.

Thank you for your welcome. I appreciate your positive thoughts immensely.

Cheers
Tarah

#8 tarah

tarah

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 12 posts
  • Location:Country Victoria, Australia

Posted 23 May 2011 - 07:22 PM

Thanks Jean

I appreciate your support. The process of 'normalizing' this stuff is hugely challenging, but I know possible when reading the responses from you and others.

Cheers
Tarah

#9 tarah

tarah

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 12 posts
  • Location:Country Victoria, Australia

Posted 23 May 2011 - 07:29 PM

Thanks Jo

Yes I have connected in with a scleroderma specialist. She is a very down-to-earth type which is how I like it. Of course I would like it if she would give me certainties about progress, time to remission, whether organs are going to be involved, mortality etc. but it seems that this disease doesn't afford us such luxuries.

How rude. The world was pretty stable before this.

I had a plan, career success, retirement at the beach, my son to become Prime Minister you know, the usual.

Who would of thought that life would be so inconsiderate and challenge my illusion.

Cheers
Tarah