Jac

Hello from Me!

14 posts in this topic

Hi Folks -
 
Found this place at last.
I was diagnosed with Systemic Sclerosis about a month ago although it took them 3 years to decide what was wrong with me. I have got Raynaud's and Sjogren's previously.
Am now waiting for gastrointestinal investigations and lung stuff because I'm very clogged up in my lungs and something showed on X-Ray, probably fibrosis starting.
 
I am also autistic which complicates things in 2 ways - 1) I have no friends or support so I do this pretty much on my own (I have an elderly mother but she is limited in what she can do for me) and 2) I am not good at hospitals and have some difficulty communicating and hate being touched which makes some procedures difficult and distressing for me and so far my local hospital have been less than understanding.
 
I am very scared about my future and feel unwell a lot of the time and lonely too.
Am hoping a forum like this will be good to be part of.
 
If I post stuff in the wrong place, just tell me!

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Hi Jac,

 

Welcome to these forums!

 

I'm sorry to hear that you've recently been diagnosed with Systemic Sclerosis and have been suffering with Raynaud's and Sjogren's syndromes. I've also included links from our medical pages to Gastrointestinal Involvement and Lung Involvement to give you some more information.

 

We do recommend that our members, if possible, consult a Scleroderma expert as this very bizarre disease does really require specialist treatment, which sadly some rheumatologists are unable to give. It might also help you to be in a hospital which does specialise in Scleroderma, where perhaps they might be a little more understanding about the problems you're facing.

 

Now that you've found our forums and joined our community, you'll find there will be a wealth of help and understanding towards you. I've moved your topic from the Fun and Friendship forum to our main Forum, to enable as many members as possible to read it and hopefully offer you support and advice.

 

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 Jac,

 

Sorry to hear you're having such a traumatic time with the diagnosis and the treatment at the hospital. I can only imagine just how alone and vulnerable you have been feeling :crying:

Well, you have found the best place for support, help and advice, and very gentle, warming hugs whenever they are required ! :emoticon-hug:

 

Hopefully, now they have a confirmed diagnosis of SSc, they should be able to help with some of the weird and wonderful symptoms that come along with it. Please don't think that each visit to the hospital will be the same, if you can stay calm, and explain about your concerns - maybe with the nurses before you go in to see the doctor - you can get your feelings and worries about examinations highlighted before they ask ?

 

What part of the UK are you located in ? Maybe you can look at getting referred to a specialist (Joelf has given you a link to the UK specialists in her post above) and ask on here about the clinic etc. before you go - so you will have an idea as to what to expect before you attend ? I know I'd be happy to share my experiences with my specialist in Manchester.

 

Good look with the additional tests that are coming your way, and remember, you are not alone in this ! :flowers:

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Hi Jac, Welcome!!

 

Hope you find peace here as I have. Not easy going it alone but here you can feel at home :)

 

I was diagnosed in 2000. I also have Raynauds, Sjogrens, and intestinal flare ups. Breathing is getting harder for me when I overexert myself. t's hard to adjust to slowing down and not being able to do things normally. At least I'm not feeling guilty for napping anymore. :happy-dance:

Big hugs to you. Again, welcome!

 

Carr


CarriePan :fairy:

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Hi Jac,

Just wanted to welcome you to the site. Everyone is very friendly and you'll find lots of support. Also we do have a chat night on Wednesday evening at 7.00pm and you would be very welcome to join us then.

Take Care,

Buttons

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Hi Jac,

Believe me, you are not the only one who is not good at hospitals and communicating, and many times it is not your fault. Dealing with an illness is difficult, the not feeling well, dealing with multiple doctors, understanding what they are saying, trying to coordinated your care, feeling isolated and other things you are expressing are common for anybody and must be even more difficult for you. I can see where hating being touched could really be a problem.

You appear to have a good understanding of your issues. Are any kind of advocates available for persons with disabilities in England? Perhaps someone from there will be able to give you some advice on this.

You have come to the right place for information, support, and FRIENDS!!

miocean


ISN Artist

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Thanks everyone, it has really helped to know I have a place where I can ask questions and get some answers and support.

 

Still waiting for next appointments and still taking the pills - lots of them but I think some of them are starting to work because I haven't had a Raynaud's episode at all this week which is the first time in a long time so that's good!

But feeling lousy otherwise.

 

I'll stay in touch - thanks guys!

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Hi Jac,

 

I somehow missed your thread when it began, and want to stop by to welcome you to Sclero Forums.  I'm glad you are getting your Raynaud's under control.

 

Now that you're diagnosed, you will find that in many ways it becomes easier to cope with some things. There is more stress than we realize when we are in the pre-diagnosis stage. And having a proper diagnosis means you can get the most appropriate treatments and support. Many of us were floundering trying to figure out where/how to get support before we knew, for sure, what we were dealing with.

 

I'm sending some extra warm hugs -- of the happily nontouchable variety -- your way.

 

: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 Jac,

 

I just wanted to let you know that you are not alone. I have a sister who has been battling scleroderma for years now. and she is my strength. I recently found out I have COPD and asthma and on top of that I have extremely bad arthritis and planter fasciitis. Life doesn't ever seem to get any easier, but we always have hope and Sclero Forums!!

 

Take care,

 

northstarhope*


northstarhope* :emoticons-i-care:  :thank-you: 

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Hi NorthStarHope,

 

Welcome back to Sclero Forums!  We've missed you. I'm sorry you have COPD and asthma, arthritis and plantar fasciitis. It is very kind of you to reach out to Jac.

 

: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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Shelley, thank you very much!!! I truly miss everyone!!!

 

Even though I have these problems of my own, I keep my chin up because I have become a stronger person as I watch my sister portray her strength and also as I speak with friends here who have given me so many kind words and show so much concern and strength!!   I feel the road may be a long one, but at least we can walk it together.

 

:thank-you:


northstarhope* :emoticons-i-care:  :thank-you: 

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Hello Jac

 

Please accept my belated welcome to the forums! I hope you are feeling right at home here because we are mighty glad to have you with us.

 

Hospitals and tests can be overwhelming for sure and yes, people can be less than sympathetic even when we tell them we have reservations. As difficult as it is you really need to have whatever tests they want you to so they can find everything out and hopefully treat it.

 

Please keep posting.


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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Hello NorthStarHope

 

Lovely to hear from you again! I hope you and your sister are doing well.

 

Don't be a stranger, keep posting!

 

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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