Ted's wife

new member

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Hi My name is Tracey and this is my first forum visit. My husband Ted (55) has FINALLY been corretly diagnosed with Scleroderma. He is very short of breath, tires easily, has lost 20 lbs. and is retaining fluid. We have been reading as much as we can but don't know anyone else with this disease. We are from Colorado, we live in a very small town on the western slope. I am a Children's Librarian and My husband has is own Trucking Company. We understand that this is not a "man's" disease and wondered of there were any men on this site or any partners of patients. Thank for your time. Happy Holidays.

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Hi, Tracey, and welcome to the ISN Sclero Forums. It is so nice that you have joined us and yes, we do have several male forum members and also spouses, partners, parents and offspring of those who have scleroderma among our ranks. Off the top of my head we have Kamlesh, CraigR, GocartMoz and Birdman and his wife, BMW (Birdman's Wife). Lori-Scleroderma Spouse is another wife. There are others who I hope will speak up and introduce themselves to you. If you have any specific questions or experiences to share, please speak up. Hugs to you both.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Tracy,

I'm sorry to read that your husband has been diagnosed with scleroderma. From you comment, it sounds like it took a while to get diagnosed. Pretty typical for this disease. Is he seeing a rheumatologist?

 

As Jefa mentioned, there are a few men members that frequent the forums. I'm sure you'll hear from some soon. All of our members are very supportive and willing to share their personal experiences with living with this disease. This ISN site is also full of information that is very helpful in learning more about any symptoms your husband may be experiencing. Just ask anything.

 

I'm glad that you have joined us. Welcome!

 

Big hugs to both you and Ted,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Tracy

 

My husband was diagnosis about 2 years ago. He was 39 and self- employed. It has been a long battle but with modern medicine he has done better than we were first told. I would be glad to talk with you at an time. I fyou will send me a private message, I will give you my e-mail address and any other info. Keep all the positive thoughts.

Lori


Lori

Scleroderma Spouse

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Welcome Ted's Wife!

 

I'm so very glad you've joined us. You and your husband will find this site valuable. It is full of information, support and good ole friendship.

 

As Jefa mentioned there are several men here on our site, I see a couple have touched basis already. I do hope this is helpful to you.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Ted's Wife:

 

I was diagnosed in 2006 at the age of 43. Although a larger percentage of woman than men suffer from the disease, many men also suffer from Scleroderma. There are certainly our fair share on this site. You have come to the right place. I am sorry that your husband has this awful disease, but be re-assured that new and innovative treatments are being discovered regularly. We have come a long way and I am encouraged that we will see even better treatments in the near future. I have diffuse scleroderma and would be very willing to share my experiences with either your husband or you. One of the things that made this disease easier for me was the support of a wonderful wife and caregiver. Your husband should be very thankful he has you. The support of family goes a long way. Without family and this forum, the road would be much more difficult. Welcome to the site.

 

Dave in FL

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Thanks Sweet,

 

That is me in the back of a Limo, this past weekend, on our way to Orlando to have dinner at Emerils. We surprised my father by taking him there for his 75th birthday. My brother surprised him as well by flying down from NJ. It was a great night. Let me recommend Emeril's(Emeril Lagasse from the food network) to anybody who is up for some great grub. I ate way way too much.

 

Dave

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Hi Tracey and welcome. You have come to a place with wonderful people who are very supportive. I wish you and yours the best and know that we are all here for you. I am a newbie myself, and the members here have brought much comfort.

 

Karen

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Hi Tracy and WELCOME!!! You have definately found the BEST website for support and information out there!!As others have said, I'm sorry you had the need to find us though :( . You will learn that family support is of the utmost importance to someone with sclero. I am 49 and the diagnosis rollercoaster (however, this rollercoaster is NO FUN!) began 10 years ago. I had to "retire" 4 years ago, if I hadn't I honestly don't think I would still be here today. My husband and kids (23yr old son and 18yr daughter) are ABSOLUTELY WONDERFUL to me. I couldn't do or go as much as I do if it weren't for them. I will be adding another wonderful daughter one day, my son is engaged to a wonderful girl (no date set :( .) It is imperative that your husband has the support he will need thru his bad and good days. My husband was a truck driver for many years for a large company, now he's the city dispatcher so he can stay here for me. Now if I need him, he's just a call away, not thousands of miles away. So I have insight to your world of the trucking industry. Hopefully , you can get your husband to visit us as well. Both of you will need lots of support and correct information. Again, WELCOME!!


Peace :)

Barbara aka relicmom1

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Tracey

I'm BMW (birdmans Wife) he was diagnosed with diffused 1 1/2 years ago. You came to the right place for info. and support. No question is too small or unimportant. Someone will always try to help. Feel free to PM if you want to talk about being a spouse, or if I can help in anyway.

BMW

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