Posted 30 April 2008 - 10:02 AM
Posted 30 April 2008 - 10:08 AM
Welcome to the Sclero Forums. I'm sure sorry to hear about your diagnosis, and the lack of support. However, I'm sure glad you found us! You will find wealth of information, support and friendship here from those that truly get it!
Posted 30 April 2008 - 10:15 AM
Posted 30 April 2008 - 10:46 AM
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 30 April 2008 - 10:57 AM
I'm glad you found us too You'll find you will get lots of help and support from all your new friends here on this site!
Posted 30 April 2008 - 10:58 AM
Try to find any sort of local groups or courses you can join to expand your social network. It's normal for our social life to take a royal dive whenever we go through major life changes like divorce or diagnosis and it takes some creativity and determination to restore our support resources.
Our forum is a great start for you!
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.
Posted 30 April 2008 - 11:12 AM
Posted 30 April 2008 - 11:42 AM
My namesake! That was my nickname growing up. I can truly say I know how you feel. My sons walked out just short of the diagnosis. The oldest, like myself, had somewhat known for quite a few years. They decided to remain estranged as well. Funny Linda, it was my ex husband who started to call and check up on me, and started to pay court order monies when he found out I was sick.
Don't despair. How long will you live? Does anyone have a given time period, either normal or sick? Concentrate on getting your thoughts together. Twenty three years of marriage is a long time, you need some adjustment in trying to cope with that in addition to your diagnosis. Things will start to straighten out. I started seeing a psychologist when things started to cave in and fall apart. It helps tremendously as does this forum site. You'll meet new friends here who share your illness and who can provide many answers to your questions. This is an uplifting site full of truths and good advise.
Once you're able to level out over all this news, you'll be able to see there is a life after diagnosis. You could live to be 100, but you'll probably be pretty bored.
It is what it is...........
Posted 30 April 2008 - 05:04 PM
Did I mention that I've had scleroderma for 26 years and my lovely wife has had it for 15? I'm 52 and she's 50.
We are not given guarantees in life. However, it is guaranteed that if you do not live life to its fullest, if you do not live life with your senses wide open and if you don't stop to smell the flowers...or grow them.... you might miss out on some fantastic opportunities and you might miss out on meeting some wonderful people. Plus, you'll miss a flower or two along the way.
Set up small goals and some longer goals.....and then go live.
I've been thru a heart attack, chemo treatments, numerous hospital visits and getting hit by a car twice while on my bike (I'm a cyclist). But I still get up every morning cause I've got goals that still need to be reached. Anyway, just my dime's worth (2 cents plus inflation).
Posted 30 April 2008 - 10:23 PM
How dare someone you love, walk out on you! He must have been very selfish and very weak because it takes two to fight illness in a marital situation -- My assumption is, you're better off without someone who has no sympathy or support for you. I bet if the boot was on the other foot, you would have stood by him through thick and thin!
Everyone here is special. We all cope and sometimes we don't, and that's when you can air your views right here amongst people who really care. We don't always have the right answers but at least everyone knows what you're truly going through.
Good job everyone! And welcome to the board.
Posted 01 May 2008 - 02:00 AM
This is the best place for support and friendship and some giggles too. We are here for you. Keep that chin up girl.
Posted 01 May 2008 - 02:12 AM
You sound like you usually have a great attitude and that's so great. I'm 59 years old - and have had sclero since I'm 21. And tho' I've had plenty of "pity" days, I've had more fun days. I've come to let myself focus on pleasures, and indulge myself, because, why not. It's given me the freedom to do things just because I want to.
My feelings are to steal pleasure for yourself purposefully every day and take care of yourself. You deserve it.
Try not to let the small stuff get you down - we've all had thinning hair, small mouth problems, and this is a great place to come and share our burdens.
Sending you warm days and sunny skies,
Posted 01 May 2008 - 04:37 AM
Again welcome and warm hugs,
Posted 01 May 2008 - 09:17 AM
Posted 01 May 2008 - 06:57 PM
I was diagnosed with sclero in my 30s and I'm now 65. I am doing pretty well, too! Just stay on top of symptoms, get help for pain and live your life!
Sorry you were dealt a double blow like that. I have an extremely supportive family and my husband is wonderful.
Posted 01 May 2008 - 10:19 PM
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host
International Scleroderma Network (ISN)
Posted 02 May 2008 - 01:27 AM
I noticed in your first post you said something about a permanent tan. It's funny you mention that because every time I go the doctor, and the nurses take my vitals, they always mention my skin being tan, asking where I went on vacation etc...which I have not since my honeymoon 2 years ago. Is this common with sclero? Tanned skin? Just wondering as I havent seen anything on this subj.
Anyone have a similar experience?
Posted 02 May 2008 - 06:07 AM
People always ask if I've been on a cruise! They remark how beautifully tan I am. My skin has always been fair up until this.
It is what it is...........
Posted 02 May 2008 - 06:34 AM
I really think you found this great site just in time. Those of us here... may be biased about "our family" and the information that is so abundant here.
We not only try to help, we are also here to support one another... emotionally.
Your feelings are also normal... so soon after diagnosis. However.... there are others here who also have diffuse and will likely share their thoughts, feelings and experinces with you. As a result, I hope you feel better about all aspects of your life and find the strength we all feel.... strength in numbers!
I'm sorry things ended as they did.. with your marriage.... but now, you can focus on becoming your own advocate and becoming empowered with as much information you need to feel a little less stressed.