Posted 07 November 2007 - 05:47 PM
Posted 07 November 2007 - 06:46 PM
I think we all know what you are feeling. We've all been there at one time or another and it's a place that, unfortunately, gets revisited way too often. I've lost some very dear friends because they didn't understand and didn't want to accept that I had "changed." Well, it's their loss, not mine. I have found other friends (like all the members of ISN) that are just as dear as the old ones, probably more so because of their understanding and support.
There's lots of people here that understand, so you're in the right place.
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 07 November 2007 - 07:46 PM
You are in company of many friends here who feel exactly like you. It is important for you to be in supportive group like this.
Janey has said much better than I can summarize.
I know it is very difficult, but we need to get out and seek friendship/help from sources such as this group.
Please take care of yourself!
Posted 07 November 2007 - 11:39 PM
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 08 November 2007 - 02:12 AM
It is a sad but true reality of life that most people do not care to hear about illness and tend to shy away when an illness is chronic and not understandable to them.
I came to realize this disease took me years to understand and it still keeps me guessing at times. So I quit explaining it to anyone and have found friends in people who respect me and have compassion and like to have fun!!!!
And you are never lonely when you have all these people here who more than understand and can help you through the tough times. WE ARE HERE AND CARE!!!!!!
Your friend , Susie54
Posted 08 November 2007 - 03:29 AM
Scleroderma is a lonely disease. It is hard to understand for US let alone our friends and families.
I am glad you have come here. Welcome! You will find much support and understanding within this great group of people.
Keep on coming back. We're here for you.
Love and hugs,
Posted 08 November 2007 - 05:49 AM
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host
International Scleroderma Network (ISN)
Posted 08 November 2007 - 08:27 AM
My heart goes out to you, but I feel better, knowing you've come here.
You will find, very quickly, that we understand only too well, what you're going through.
Please rest assured... we are only a "click" away... whenever you feel a need for comfort and support.
Posted 08 November 2007 - 12:22 PM
Posted 08 November 2007 - 01:40 PM
Like you we all fall down but we have to try hard and get up again.
Good luck and keep posting. Gizelle
Posted 08 November 2007 - 05:34 PM
Welcome to the Sclero Forums, where you've just adopted a huge family that absolutely understands what you are going through. *hugs* Please take your time reading through the posts and you'll find you are amongst those that are going through just what you are and who will have valuable insight to help you through the tough times.
Post often, ask questions and most of all, know you are not alone!
Posted 08 November 2007 - 07:29 PM
Talk about alone, I lost my children when they found out my diagnosis....lock, stock and barrel.....just moved out! They couldn't deal with it, and refuse to speak to me or see me and they live four miles away!
I used to hide my condition except for a select couple of friends. Now I say what it is, and have found no "shock" reactions to it. Instead, I have found friends being so supportive and positive.
In addition, I think my main sanity upon my diagnosis, was finding this website and all the beautiful people here who have bolstered my ego and accepted mye as a member to the inner circle "club" of a special group of us who share the same illnesses and symptoms.
Alone? You are not alone here........we care......we know.....we feel the same things you do. You are never alone here, and those that walk away (or run away), are those who would only bring you down. Here, you can only look up!
Always feel confident to post here, or if you want to contact any of us directly, just send us an email.......we are here for you always.
It is what it is...........
Posted 09 November 2007 - 10:02 AM
Posted 09 November 2007 - 09:31 PM
I totally understand how you feel. In Finland it's impossible to find anyone with scleroderma, cause we have less than 500 cases among more than 5 million healthy one.
I bet none of my friends truly understand me, and even my boyfriend admits that he can never totally understand what I'm going trough, and what it's like to be me. I've stopped to try to make them understand, cause I've realized that it's enough if they understand why I don't have energy to do all the things and all the same options.
Posted 10 November 2007 - 07:11 AM
Please know that even though I'm new to this I am still here for you! You, and everyone in this forum, are in my thoughts!
Thanks for listening.