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#1 Ted's wife

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Posted 23 March 2008 - 07:05 AM

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.

#2 jefa

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Posted 23 March 2008 - 09:26 AM

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

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#3 janey

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Posted 23 March 2008 - 04:53 PM

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
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(Retired) ISN News Director
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International Scleroderma Network (ISN)

#4 epasen

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Posted 23 March 2008 - 09:53 PM

Tracy,
sorry to hear about your husband's diagnosis. You've come to the right place. :)
Take care,
Emmi

#5 Lori-Scleroderma Spouse

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Posted 24 March 2008 - 04:11 AM

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
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#6 Sweet

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Posted 24 March 2008 - 06:14 AM

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)

#7 GocartMoz

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Posted 24 March 2008 - 05:09 PM

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

#8 Sweet

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Posted 24 March 2008 - 05:31 PM

Love your new pic Dave!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 GocartMoz

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Posted 24 March 2008 - 05:43 PM

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

#10 barefut

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Posted 24 March 2008 - 07:12 PM

Hello Ted's Wife,

Just wanted to say hi and welcome to you. So glad you found us! Visit often. Maybe Ted can visit too someday soon?

Hey Dave,

Looking good! Looking healthy! Hope you feel the same.

#11 ez62

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Posted 25 March 2008 - 01:51 AM

I have eaten at that Emeril's, Dave. It is amazing!

#12 Karenlee

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Posted 25 March 2008 - 02:42 AM

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

#13 relicmom1

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Posted 25 March 2008 - 03:45 AM

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

#14 Sweet

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Posted 25 March 2008 - 05:22 AM

Dave,
What a wonderful gift you all gave your dad. Oh and yummy on the food, I'll keep that in mind!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#15 bmw

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Posted 25 March 2008 - 11:38 AM

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

#16 Ted's wife

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Posted 26 March 2008 - 06:02 AM

:) Thanks for the names of the others I really appreciate this. Tracey

#17 Snowbird

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Posted 04 April 2008 - 03:41 AM

Hi Tracey

Welcome from me too! I've been here since November.
Sending good wishes your way!

#18 truman

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Posted 04 April 2008 - 07:31 AM

Hi Tracey:

Welcome aboard....you found a wonderful, loving and supportive site!

It's been my thinking that there are more with Sclero than is reported. I firmly believe doctors treat symptoms one at a time, but when compiled and with a little knowledge, the diagnosis is evident.

I actually had a male schoolmate who was diagnosed in his early twenties and just learned of another family I went to school with in which the brother, sister and mother have begun symptoms of CREST. I myself have had it going on 17 years now but kept it a secret from everyone other than my doctors. I never even told my doctors until certain symptoms clearly made it obvious and there was no hiding it anymore. I think there are a lot that are hiding it too, either out of fear or like me, in denial

Of my three main doctors, my general practitioner had little knowledge of CREST and was getting annoyed in that I couldn't be cured of any minor ailment easily, my Podiatrist who had absolutely no knowledge of CREST and my rheumatologist who obviously was well aware of CREST. My general practitioner and Podiatrist are quite up on the subject now. I even overheard my Podiatrist tell his nursing staff both at the wound care center and at his office to get on the internet immediately and start learning about CREST and Sclero. My Podiatrist had to perform a toe amputation due to a condition started by Raynauds. The nurse at my general practitioner's office asked what CREST was, and I tried to explain. She too, said she was going to hit the internet and begin learning more.

I guess what I'm trying to say, is there are more of us than I think anyone realizes and we're definitely not alone. Take a peek at the Member Map on this forum, which doesn't list all of us, but you'll see we are quite a few all over the states and countries.

What I find the most interesting and comforting is I can share and post with others from all areas of the world! It's amazing. Try the chat room as well. Interesting discussions, swapping of thoughts and a little laughter thrown in.

To you and Ted....

Welcome!
Tru

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

#19 Cheri

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Posted 04 April 2008 - 07:59 AM

Hi Tracey,

Welcome - although I think more women have this disease, I think there are probably a lot of men who have it too. To make a long story short, my little sister was adopted when she was 2 and I just found her a few years ago. Her "adopted" dad and I have become friends. My sister was telling me about some weird disease that I had never heard the name of before - and promptly forgot the name as soon as she told me. A year later when I was diagnosed with Scleroderma, it all of a sudden clicked that some of my symptoms sounded like things she had said about her dad although he has diffuse and I have limited. He is doing okay and he is even in his 70's. He has had the disease for about 10 years and when he came to visit two years ago (driving an RV from California to Washington where I live), I didn't even know he had a problem. It was after the visit that I learned what he had. He continues to do well and is thinking about coming to visit again this summer - driving his RV.

This site is awesome - not only because the people are so warm, but they are so full of information and so willing to share.

Welcome and hugs -

Cheri

#20 Margaret

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Posted 04 April 2008 - 09:49 AM

Hi Tracey ,

I am chiming in a bit late, but my son, Gareth, was diagnosed 18 months ago at the age of 18 with sine Scleroderma. It's been revised to UCTD since he was put on Plaquenil last June and improved so much. I was totally shocked and surprised by the diagnosis after reading that it usually affects middle aged women.

Take care, Everyone.
Margaret