FaithHopeLove

New Member

22 posts in this topic

Hi, my name is Andrea and I was diagnosed with Limited Systemic Scleroderma approximately 8 years ago (after also being diagnosed with Hashimoto's Thyroiditis approximately 12 years ago), and since then, have been trying to carry this by myself, without support, or anyone to talk with. Even the rheumatologist I was referred to doesn't seem to 'get it'. How do I explain to my family, friends and work colleagues that simply trying to get through a normal day is an incredible challenge? To be honest, I think most of the problem is mine, as I am a master at covering up exactly how I am really feeling and just 'get on with it'...yet in reality I can't even pick up the phone to talk to a scleroderma group without falling to pieces - and hence, haven't made the call. Even whilst typing this I am crying. Not out of self-pity, but out of a desperate feeling of self-imposed loneliness and isolation. I try to keep positive, and mostly do, but I sometimes wonder if this is more a case of denial than positive thinking!!

 

Every so often, I 'Google' scleroderma in the hope of finding some new information. Today, I was encouraged when I found 'Scleroderma Australia' (thank you!). I live in Adelaide, SA, and I would really appreciate the opportunity to talk / chat with other people who can relate to this emotional, psychological and physical rollercoaster. I would also appreciate the name of a Scleroderma specialist in Adelaide whom I can consult.

 

Thank you!

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Hi Andrea,

 

Welcome to these forums!

 

Firstly many kudos to you for dealing with Scleroderma for the last 8 years; I also have Limited Sclero but am a comparative newcomer, having only been diagnosed for the last two and a half years. I'm so sorry to hear that you've been struggling to come to terms with the disease and have been feeling so isolated and alone. Because this disease is so unusual and manifests itself in so many different ways, it is difficult for friends and family to understand the intricacies of it. (My friends were intrigued to begin with and then bored witless after hearing continuous minute descriptions of all my symptoms and treatment! ;) :lol: ) However, now you've joined our commumity, you'll find there will be many like-minded people who do understand how you're feeling and can give you lots of excellent advice.

 

We do recommend that you consult a Scleroderma specialist as sadly some rheumatologists do not have the expertise to deal with this bizarre disease.

 

Do please keep posting and you will find a wealth of help and information both on the forums and in our medical pages.

 

Here's a welcoming :emoticons-group-hug: ( I'm the red one! ;) )

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello FaithHopeLove,

 

Nice to hear from you, but sorry that it is because you have Scleroderma.

 

Just remember there are quite a few of us out here who are willing to talk at any time about anything that is worrying you.

 

I live in Auckland so am in the same time zone as you are and in the same weather zone which makes a difference!!!

 

Use this forum as a source of support and information, and you will find people with the same worries and concerns as you have.

 

In the meantime, warm hugs and best wishes.

 

JudyT

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Hi Andrea,

What a brave move you have made, and I fear in desperation.

 

Doing it alone is certainly the hard road, but sometimes it does take a while to get there.

 

If you contact me via the Scleroderma Australia website, www.sclerodermaaustralia.com.au we can put you in touch with a group in Adelaide, but most importantly we can head you in the right directions for a rheumatologist who specialises in Scleroderma.

 

There is an Australian Scleroderma Interest Group who have rheumatologists and other specialists in each State and have a scleroderma clinic. Not only can they look after you, but they also keep data for research purposes. They are a very dedicated group of specialists.

 

I am so pleased that you posted and I know you will get so much support from all our friends here at the ISN.

 

Keeping things to yourself is probably a defence, but not the best way to travel.

 

Kindest regards,

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Hello Andrea

 

Welcome to the forums! Being on the scleroderma rollercoaster takes constant adjustment, both physical and emotional because things are always changing. The problems you encounter in year one are very different to those you encounter in year 4 or 8 and so forth.

 

Being in contact with other sclerodermians is really beneficial and I hope you will continue to post here.

 

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)

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Hi Andrea,

 

You have come to the right place for finding out information that is for sure. :) Chin up Chookie, this is a good place for you start. I too am in Adelaide and attend the Scleroderma Clinic at the RAH. You need to get your Rheumatologist or general practitioner to refer you to the Royal Adelaide Hospital, Rheumatology Deptartment first, then if nothing happens get your boss boots on and contact the RAH yourself to get the help you need they will point you in the right direction.

 

The Scleroderma Clinic is involved in the Australian Scleroderma Interest Group who are researching this horrid disease and they are fantastic. The doctor in charge of the Clinic is Dr Suzanna Proudman. Or even get your Rheumatologist to contact them.

 

We are really lucky here in Australia, when I read what our overseas Scleroderma patients have to go through to get help, I am truely thankful for our public health system. It does have its problems, but I am glad we have one.

 

 

:happy-day:

 

Cheers Deb

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Thank you so much for your replies, which are in themselves an encouragement and a relief of the 'finally' type. And thank you Robyn and Deb - I visited my general practitioner this afternoon, and have a referral to Dr Proudman. For the first time in a very long time, I feel as if I have taken a positive step in the right direction. I am very very grateful.

 

:thank-you:

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FaithHopeLove may you have many more positive steps in the right direction and please let us know how you get on.

 

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)

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HI Andrea,

 

We are so pleased that we were able to help set the ball rolling for you.

 

Good luck with your appointment, I am sure you won't be disappointed.

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Hi Andrea,

 

That is wonderful news, and I am really glad you finally have that feeling of relief. It sure does feel good. :emoticons-line-dance:

 

Just be aware though that things slow down at the RAH over the holidays, so if things seem a bit slow at first, dont be too concerned, its normal for this time of year.

 

You are in very good hands with Dr Proudman, she is fantastic. As Robyn said Good luck with your appointment and keep us posted.

 

 

Cheers. Deb

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Hi Andrea,

 

I'm so pleased to hear that you were able to contact your general practitioner and that you'll be getting a referral to an excellent Scleroderma specialist.

 

Do please let us know when you get your appointment and also how you get on with it.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Andrea,

 

Welcome to Sclero Forums! I'm so sorry that you spent so many years isolated in dealing with scleroderma. And I am thrilled that you have found us now, finally, at long last. It is terrific that you will be seeing a scleroderma expert and getting involved with Scleroderma Australia.

 

You can especially thank Robyn, who was the one to establish contact with us and so graciously trained to handle this Australia subforum.

 

Since you have lived with scleroderma for so many years, I'm sure you'll have a lot of insight to share with others.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Andrea,

 

That is wonderful news.

 

I think now you will have some Peace for the festive season.

 

Thinking of you and looking forward to hearing how all goes.

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Excellent news, Andrea; I'm so pleased for you! :emoticons-yes:

 

Do please let us know how you get on with your appointment.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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