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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 linda lou

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Posted 30 April 2008 - 10:02 AM

I have diffuse scleroderma,just found out in septenber. not happy about it ..i have no support,find it hard at times.was married 23 years but the ex ditched me in april just before I found out.i am a positive person,make jokes about tight skin, no wrinkles at 46....tanning no cost....not sure what this road is going to take me.i wonder how long I will live...linda

#2 Sweet

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Posted 30 April 2008 - 10:08 AM

Hi Linda,

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!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 Hilda

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Posted 30 April 2008 - 10:15 AM

Hi welcome .I am a newbie too and have really appreciated the kindness and info from the people on this site. Sending you good thoughts and support Hilda.

#4 linda lou

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Posted 30 April 2008 - 10:44 AM

thanks pam,i need all I can...linda

#5 peanut

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Posted 30 April 2008 - 10:46 AM

The unknown and the lack of answers to all our questions is so hard. I'm glad you found us.

Hugs, peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#6 Snowbird

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Posted 30 April 2008 - 10:57 AM

Hi Linda Lou

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!
Sending good wishes your way!

#7 Shelley Ensz

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Posted 30 April 2008 - 10:58 AM

Welcome, Linda Lou! I'm glad you found our forum for support for scleroderma and we're glad to have you here. I also found counseling and support groups very helpful when dealing with divorce. It's such a major adjustment to make, and doubly so, I'd think, when dealing with illness on top of it all.

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!
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.

#8 linda lou

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Posted 30 April 2008 - 11:12 AM

thanks shelly and everyone else,i feel a little better,im not good at typing or computers ....im from saint john n.b. there is no meeting here.im glad I found a site with people that can relate to me.linda

#9 truman

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Posted 30 April 2008 - 11:42 AM

Hey Linda Lou:

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.
Tru

It is what it is...........

#10 YFChoice

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Posted 30 April 2008 - 05:04 PM

Hi linda lou....I've been in a similar situation. My 1st wife called it quits after 18 years.....I didn't die with scleroderma like she expected. I thought it was better to be by myself than with someone like that.....didn't need the extra stress. But as one door closed another opened up. I met my soulmate and we will celebrate 10 years of marriage this summer.

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).
~ You have to think anyway.....you might as well think big

#11 CFMBabs

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Posted 30 April 2008 - 10:23 PM

What positive attiudes you all have. I particulary like yours YF! I guess we all have our different ways of coping and it's not easy when you have to cope with personal trauma's as well.
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.

Best wishes
Barbara xxx

#12 Karenlee

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Posted 01 May 2008 - 02:00 AM

Welcome Linda!!

This is the best place for support and friendship and some giggles too. We are here for you. Keep that chin up girl.

Karen

#13 Annie N

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Posted 01 May 2008 - 02:12 AM

Hi Linda Lou
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,
Annie N.

#14 Peggy

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Posted 01 May 2008 - 04:37 AM

Welcome! I am so sorry you were dealt with two blows! It's bad enough to have your marriage end and then get the diagnosis of sclero. I, like you, wanted and still would like to know "how much time" we have. What I have learned is that this disease is ever-changing and if you stay on top of your symptoms you are ahead of the game. What this site will do for you is provide a place to have your questions answered but more importantly have somewhere to go for support and care! Please feel free to post any thoughts, questions, or concerns as there is always someone here who can relate and provide some insight.

Again welcome and warm hugs,

Peggy

#15 Guest_Sadie_*

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Posted 01 May 2008 - 09:17 AM

Welcome to the board! This is a great place! I've gotten so much support from here! I'm so sorry to hear that you are going through a rough time. We are all here for you! I have had Diffuse scleroderma for 18 years. At that time, the doctors told my parents that I may only live 3 years. I am alive! Peggy is right, if you stay on top of the disease, you do well. Even though it's scarey, there is alot of Hope for us! One the best things that has really helped me is just talking with everyone on here. Everyone gets it. Feel free to send me a PM.

Sadie

#16 bookworm

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Posted 01 May 2008 - 06:57 PM

Hi Linda Lou,
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.

#17 jefa

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Posted 01 May 2008 - 10:19 PM

Hi, Linda Lou. There is not much I can add to the good advice you have already received, but I just wanted to offer a hug and extend my welcome to the Forums. It is good to have you and I look forward to hearing more from you in further discussions.
Warm wishes,
Jefa

Carrie Maddoux
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#18 Karenlee

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Posted 02 May 2008 - 01:27 AM

Linda lou,

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? B)

Karen

#19 truman

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Posted 02 May 2008 - 06:07 AM

Karenlee:

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.
Tru

It is what it is...........

#20 debonair susie

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Posted 02 May 2008 - 06:34 AM

Linda,

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.

Hugs,
Susie
Special Hugs,

Susie Kraft
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