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Who All Has Sclero And Who Is A Loved One/ Care Giver


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#1 Patty

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Posted 22 October 2006 - 06:32 AM

I was looking around and its so hard to tell who has sclero and who is a care giver or loved one of a sclero person.
I have sclero but its nice to read from people that have family with it so maybe I can understand what my boyfriend is going through dealing with my illness. I know as hard as it is for me to me ill , its hard on him to watch me be ill knowing that he can't fix this.

Hugs,
Patty

#2 Guest_Jennifer_*

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Posted 22 October 2006 - 07:58 AM

Patty,
I just added my information for my signature. Maybe that will look alright...we'll see.
Jennifer

#3 debonair susie

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Posted 22 October 2006 - 08:29 AM

Hi Patty,
I'm glad you're here and that's a great question! I was diagnosed with Sclero in 1995. Prior to that, my hubby and I had been married for 9 years and had never dreamed of becoming ill with chronic diseases. We had 5 years together before I started losing weight and showing symptoms. After I got a semi-grip on the reality, I was able to see that he was in denial, anger and then...sadness. The life we had dreamed of... was a distant memory... we thought. With time and education about Sclero, he came around to understand that I was the same person, but needed his support and understanding. Call it a twist of fate... He was first diagnosed with asthma, then chronic bronchitis, COPD/asthma component and prostate cancer.
Patty, we pulled together and face it all... together. He is my very best friend and he often says, "Susie, I don't know if anyone realizes just how happy we really are"!
Most (outside of our family, of course! lol) might think we're pretty silly for as much fun as we have together. But, it doesn't matter whether we're with others, or alone, we treat each other the same... lovingly. Our reasoning: Life is much too precious to be unhappy... Attitude is everything when dealing with what we who are ill...do. As a matter of fact... many of our "friends"... don't even know my hubby and I are ill! We feel better, as do they... when we're smiling and having fun!
Sure, there are those days we don't feel well, but when we're among our friends/loved ones... it makes allthe difference in the world... what kind of day(s) we're going to have.
I wish you and your boyfriend the best in getting through this... together, Patty.
Hugs, Susie (BTW... Please keep us posted on how you...and he... are doing :rolleyes: )
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#4 Lori-Scleroderma Spouse

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Posted 22 October 2006 - 12:24 PM

HI Patty
My husband was diagnosed with diffuse scleroderma in April 06. He has progressed very quickly with the skin and GI. Luck has been on our side and he does not have lung involvement. It is hard some days to deal with it all. We have two young children. Hope everything goes well with you.
Lori
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#5 scleroguy

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Posted 23 October 2006 - 01:40 AM

Hi Patty,

I have diffuse scleroderma and myositis. I was diagnosed in 2002. I am a 51 yr old male.
Ron

Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.

#6 janey

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Posted 23 October 2006 - 03:19 AM

Patty,
I was diagnosed a little over 3 years ago with MCTD (dSSc and polymyositis). My hubby and I had been married 30 years at diagnosis. During those 30 years we had backpacked all through the mountains and canyonlands of the southwest, climbed 14,000 foot mountains, kayaked in the northwest and rafted in Alaska. So watching me lose my ability to get up out of a chair was very hard for him even though he never showed it. He has been with every single minute of every single day. Last night he started planning us a trip a Hawaii in May for 2 weeks of snorkeling because that's the one physical thing that I can still do all out. And it's WARM!

I know it is very hard on him, but he has been able to find his own releases. When he takes off and goes flyfishing for a couple of days, I'm thrilled. He needs to do that and unfortunately, sometimes I have to push him to do it.

Because of my hubby, my best friend - I still have a very high quality of life. He makes me laugh a lot!

Big Hugs,
Janey

#7 GocartMoz

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Posted 23 October 2006 - 04:37 AM

Hi

I was diagnosed with diffuse Scleroderma and Polymyositis earlier this year. I am 43.

Dave

#8 Sweet

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Posted 23 October 2006 - 04:48 AM

Hi Patty,

I have Lupus, CREST, and Sjogrens. Frist came the Lupus in 1999, Sclero in 2000 and Sjogrens 4 months ago. I'm 47 years old.

I have to say it was very hard to adjust for both my husband and myself. It felt like a death sentence, but we've worked through it and he's been so kind, supportive and understanding. It kills him to see me hurt and I feel badly for him that I've taken some of his freedom away from all of the fun things we used to do. We still try to do the things we love, like boat, snow ski etc, but it's greatly reduced.

One of the things I battle with is trying not to complain each day about how I only slept 3 or 4 hours (not in a row either) a night because I was in pain, or how I hurt all day long. Being in pain constantly can make me grumpy and frustrated and I try not to pass that onto him......it's hard.

Love Sweet
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 Heidi

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Posted 23 October 2006 - 07:16 AM

Hi Patty,

I was diagnosed with Undifferentiated Connective Tissue Disease 5 years ago, but my rheumatologist has always leaned toward it being more scleroderma then anything else. I fit the criteria for CREST but he doesn't use that particular designation so sticks with the UCTD diagnosis.

At first I was really scared as was my husband. He tried to hide his fear from me, but I knew he was really worried about what was going to happen. Now, we just take it in stride and it has just become one of those daily irritants that we all deal with and we don't let it dominate our thoughts or our lives.

I actually feel a lot better today then the entire first two years, and can still do pretty much everything I did before I got sick. We travel quite a bit and luckily that has not changed. I am not as active as I would like to be on those vacations and have to really be careful not to push myself or I will pay the price. But, I still snorkel (as long as the water is not too cold) and snow ski (but do not have the stamina I used to have).

My husband and I agreed early on that we would not hide our feelings from one another and that we would always keep our sense of humor. The first year I regurgitated my food ALL the time so that I had to travel with a "spit" cup all the time. We just laughed about it and let people think I was chewing and spitting tobacco.

Warm wishes,
Heidi