Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

New & having a bad day


  • Please log in to reply
8 replies to this topic

#1 Marnie

Marnie

    Newbie

  • Members
  • Pip
  • 2 posts

Posted 06 September 2011 - 10:24 AM

Hi everyone, I can't believe it's taken me all this time to read this great forum, trying to ignore the fact that I have this horrid disease, I didn't want to read it for fear of nasty stories but you all sound so up beat, I hope we can have some good chats x

#2 Joelf

Joelf

    Star Ruby Member

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

Posted 06 September 2011 - 12:13 PM

Hi Marnie,

Welcome to these forums!

I'm very pleased that you've decided to join our community and I do hope you'll keep posting and let us get to know you.

Being upbeat is all part of the course; I very soon realised (after relentlessly boring my friends witless! :rolleyes: ) that nobody would ever speak to me again if I was a complete misery and as I hadn't any intention of becoming a social leper I decided that a positive attitude goes a long way! ;)

We have hosted chats in the chatroom four times a week and would love to meet you there. As you're in the UK, you'll may find the Wednesday 7pm and Friday 10am (UK) times the most convenient for you but you'll be very welcome at the other times as well.

I'm looking forward to meeting you there. :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)


#3 uknlv18

uknlv18

    Silver Member

  • Members
  • PipPipPipPip
  • 155 posts

Posted 06 September 2011 - 01:11 PM

Welcome to the forums Marnie, and just to say that it is 4pm UK time for the Friday chat, well I think that is it, as it is MST of 10am so that would make it 4pm GMT unless it has changed from the postings that is!

This is a great resource of information not only from the many files in the News and Medical section but from all the people who have lived with Sclero for many years and are more than happy to share their experiences and help others to understand what is going on with them better. Keep posting and look forward to getting to know you through the forums and hopefully see you in chat, if I remember I tend to remember about 5 mins before an hour after it has started so everyone is ready to go by then LOL

Jean

#4 Marnie

Marnie

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 2 posts

Posted 06 September 2011 - 01:47 PM

Thank you so much for your reply; that meant a lot.

I've been so scared of this disease that I've not been able to open up to friends and family. I'm 48 years old, married (just celebrated our 25 wedding anniversary) my husband and I have 2 children and 4 grandchildren, would say I don't feel old enough but then I'd be lying :lol: I have been diagnosed with limited sceroderma but my lungs are suffering now and I'm just about to have a heart scan as getting very bad heart palpitations. Keeping my fingers crossed; this is the first time I've spoken about this let alone write it down (I feel like I'm in therapy :lol:)

#5 Joelf

Joelf

    Star Ruby Member

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

Posted 06 September 2011 - 02:39 PM

Hi Marnie,

Please don't be scared; you will find that there are many of our members (including myself!) who have been very worried by having such a bizarre disease as Scleroderma but you will find a wealth of help and support from these forums. I also have Limited Sclero with lung involvement but thankfully have not had any Cardiac involvement at present. Like you, I have been married for many years (my long suffering husband would have received a lesser sentence for committing murder!! ;) :lol: ) so we do have a couple of things in common!

Are you seeing a Scleroderma specialist? I've included a list which I hope you'll find useful, as we do recommend that you consult an expert. Scleroderma is such a complex disease and sadly many rheumatologists do not have the knowledge and expertise to deal with it. Also I've included another link to emotional adjustment which I do hope you will find helpful.

I'm sure some of our other members will be along to welcome you and do please let us know how you get on with your heart scan. :emoticons-i-care:

: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)


#6 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 06 September 2011 - 05:59 PM

Hello Marnie

Welcome to the forums! My dear friend who also has scleroderma calls it "scary drama" and at times it sure is but it's not always like that. Have you thought about meeting people with scleroderma, you can and so can your family. The Scleroderma Society hosts various local groups around the country which enable people with scleroderma and their families to meet others in the same boat.

I host the local group for Essex, we meet 4 times a year and it's just the greatest encouragement, for me and for my husband, to spend time with other people facing the same challenges we are and triumphing over them.

You're most definitely in the right place to be for all things scleroderma!

Take care and 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)

#7 rubydoo

rubydoo

    Senior Bronze Member

  • Members
  • PipPipPip
  • 41 posts
  • Location:sheffield,uk

Posted 08 September 2011 - 12:03 PM

Hi Marnie
I am a newbie to the site too and think it is fantastic to hear/read all the positive stories and advice that people are willing to share. So nice to know we are not alone and that others care. Not new to the disease but never thought I would find something like this my cup of tea but I think it is brilliant. Looking forward to hopefully many years of posting.
:VeryHappy:

#8 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 08 September 2011 - 12:38 PM

Hi Marnie and Rubydoo,

I've got another positive story for you. :)

October 26th is the fifth anniversary of my diagnosis: systemic sclerosis sine scleroderma with pulmonary fibrosis and pulmonary hypertension. So what are my husband and I doing to celebrate? Going to Australia! (Excuse me for a second while I go make woohoo! sounds. :lol: ) We'll be gone a month and hope to see lots of this beautiful country. (We're also celebrating milestone birthdays and wedding anniversary.) Other things a sclerodermian can do? How about walking 3 miles at 8500ft in altitude? Sure, I had to lug supplemental O2 in a backpack and didn't set any speed records, but I did it! I've taken on a couple of new jobs, gotten a couple of new looms, started a 2 year program to get a master's certification in weaving, and finally, finally, gotten my garden under control. That last one was tough.

As daft as it may sound, I've found my life to be richer, fuller, and still very enjoyable since my diagnosis. Just the rewards in figuring out 'work arounds' have been satisfying. I'm sure I was never this good at problem solving before. I can't think of a single thing I have had to miss out on because of the disease.

So, get out there and enjoy life! And don't forget to post about your adventures, we love to hear about them.

Best wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#9 scampie5

scampie5

    Silver Member

  • Members
  • PipPipPipPip
  • 158 posts

Posted 08 September 2011 - 01:36 PM

Hi Marnie and Rubydoo,

So glad that you have found this site. It is great and everyone is so helpful and friendly so do not be afraid to ask any questions and I'm sure every one will do their best to help you or direct you in the right direction.

Whereabouts in the UK do you live? There is a chat on Fridays and Wednesday on the US site about 6.45 onwards (I'm sure someone will correct me if I have the time wrong) Look forward to talking to you in the chat room,

Take care Lyndylou