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#1 FaithHopeLove

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Posted 08 December 2011 - 06:24 AM

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!

#2 Joelf

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Posted 08 December 2011 - 12:20 PM

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 Sclero Forums Manager
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#3 judyt

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Posted 08 December 2011 - 02:29 PM

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

#4 Robyn Sims

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Posted 08 December 2011 - 03:29 PM

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,

#5 Amanda Thorpe

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Posted 08 December 2011 - 05:00 PM

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
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#6 dglake08

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Posted 08 December 2011 - 06:13 PM

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

#7 FaithHopeLove

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Posted 09 December 2011 - 05:46 AM

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:

#8 Amanda Thorpe

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Posted 09 December 2011 - 02:31 PM

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
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#9 Robyn Sims

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Posted 09 December 2011 - 03:27 PM

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.

#10 dglake08

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Posted 09 December 2011 - 05:50 PM

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

#11 Joelf

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Posted 10 December 2011 - 09:57 AM

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
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#12 Shelley Ensz

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Posted 15 December 2011 - 10:02 AM

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
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Hotline and Donations: 1-800-564-7099

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#13 FaithHopeLove

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Posted 21 December 2011 - 05:59 AM

Greetings!

I have an appointment at the RAH Rheumatology-Immunology Clinic on January 10th.

:)

#14 Robyn Sims

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Posted 21 December 2011 - 07:14 AM

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.

#15 Joelf

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Posted 21 December 2011 - 08:00 AM

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 Sclero Forums Manager
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#16 viva la diva

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Posted 23 December 2011 - 08:18 AM

Hi,

I am new here as well. I have been reading everyone's posts behind the scenes and have truly benefited from all of your honest words.

I injured my back 8 years ago. I have nine levels of damage to my spine, and the doctors all say to 'do what feels good'.

Secondary to my back injury I was diagnosed with mixed connective tissue disease, fibromyalgia, degenerative hip disease, celiac disease, and more recently CREST. I also have two leaky valves in my heart as well lung problems that I will be getting looked at in the end of January. The CREST affects me via Raynaud's, wrist pain, what I describe as 'hair hurt', in my veins (also to be looked at), joint stiffness, exercise intolerance, fatigue, and throbbing all over.

The most challenging aspect of this for me is the attack of my GI tract. I have esophageal dysmotility, as well as problems with 'waste removal' due to spinal stenosis. I have been coping with 'flares' and trying to manage my life differently, but since we relocated last year (due to my need for a one level house) I have had trouble finding balance again.

I love food, and miss having an appetite. However, the one thing that always carries me through is my hope and my sense of humor. We are installing our new appliances next month and plan to fake it til I make it in the appetite category! I will cook up a storm as usual and eat what I can.

Participating on this blog is my first step toward seeking a new equillibrium. I found a pain association website this year, and have enjoyed reading their website. They talk about going from patient to person. That is my goal. Before all this happened, I was a person, with hopes and dreams. Now that I have accepted what I can no longer do I am excited to discover some things I can do despite of my conditions.

I think others here can relate to that decision everyday to get up and wage a war. These conditions have helped me to simplify and prioritize my days in such a way that I carve out more time for pleasure, don't sweat the small stuff (it's all small stuff) and especially to try new things so I can still be be me not my diagnosis.

I currently am waging war against Raynaud's and wrist pain by playing piano again. Sometimes I play so much, my fingers actually get hot! It's great because I am able to make some beautiful music from my pain! One more thing to share, I have a good spirit about me, but need to be around others who 'get it'.

Thanks for reading!

Viva La Diva

#17 Shelley Ensz

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Posted 23 December 2011 - 12:57 PM

Hello Viva,

Welcome to Sclero Forums! You have already been through a lot and I am glad to see that you are making the best of a bad situation. You have certainly found a whole new batch of people who 'get it' on this forum!

: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.

#18 Amanda Thorpe

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Posted 23 December 2011 - 02:11 PM

Hello Viva

Welcome to the forums! Great attitude and it seems to be working for you as well!

Take care.
Amanda Thorpe
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#19 Joelf

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Posted 23 December 2011 - 02:52 PM

Hi Viva,

Welcome to these forums!

Sorry to hear that you're having to deal with so many health problems. Hopefully, your symptoms will settle down and you won't be suffering with so many 'flares'.

Playing the piano to help Raynaud's and wrist pain sounds a very novel idea. I suffer with very painful wrists and hands, but sadly my piano playing never graduated beyond playing 'Chopsticks' with one finger, so I don't suppose that it would help me much!! ;) :lol:

Kind regards,

Jo Frowde
ISN Sclero Forums Manager
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#20 Robyn Sims

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Posted 23 December 2011 - 07:04 PM

Hi Viva,

Seems to have come through the other side!! Congratulations and all the best wishes to you for continued psychological wellbeing.

Great about the piano!!

Look forward to hearing more from you