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What Was The Environmental Spark!

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51 replies to this topic

#41 janey


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Posted 05 January 2007 - 12:57 PM

I live right at the mile high marker in Albuquerque and I do know that the altitude affects my lungs. When I go higher, I can't breathe, but whenever I go to sea level, I breathe so much better and I don't get near SOB. Oh Well - I love living here and wouldn't live any where else. Right now we're still digging out of the 16 inches of snow we got last week and they are saying more snow tonight. It's beautiful!!! The kids have had off all week so they have been sledding every day in the park across the street. I love sitting at my computer listening to the little girls screaming as they go down the hills. Nothing like a little girl's "fun scream."

I hope you have a safe and not too tiring move back to Denver. I hope it doesn't have too much of an effect on your health.

Big Hugs,

#42 Guest_Jennifer_*

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Posted 05 January 2007 - 01:44 PM

I am moving back to Denver to marry the man I left behind five months ago, to move to a lower altitude and be with my family in Arkansas. I miss him too much and so the love story goes, I went back to Denver last weekend and came home engaged. I have no doubt it's going to be harder on me but I'll just have to use more supplemental oxygen. drag...but in the name of love I will do it. Yes, it's snowing again there...and the summers are fantastic...all five months.

#43 Sweet


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Posted 05 January 2007 - 02:03 PM

Congrats Jen!!!
Warm and gentle hugs,

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International Scleroderma Network (ISN)

#44 Sheryl


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Posted 05 January 2007 - 02:25 PM

If people get this disease after being sick or tired and run down. If you are a child and sick alot had maybe tonsils and adnoides out and dental work is done, could that be where ours orinigated. A couple surgeries on top of being run down in the first place. Are we getting hotter. I don't think so. But, we have to go thru what happens to the kids up until they are diagnosed I would think. It could be so simple and everyone is overlooking it. Where is our think tank? Sheryl

#45 Heidi


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Posted 05 January 2007 - 02:34 PM

Hi Jennifer,

Congratulations on your engagement! That is so wonderful. I do hope your move goes smoothly and you are able to re-aclimate to Denver's weather without too much difficulty.

Warm wishes,

#46 Shelley Ensz

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Posted 05 January 2007 - 02:43 PM

Hi Sheryl,

As I understand it, there are only a very few children who have the systemic form of scleroderma. The vast majority of them have localized scleroderma (morphea and linear), which is very different in many ways from systemic. It primarily affects the skin, and for the large part lacks internal organ involvement.

Oddly, scleroderma affects children equally until about 8 years of age, whereupon it predominantly affects females. That is mentioned in our most recent book, Voices of Scleroderma, Vol. 3.

There has been a lot of research done into causes of scleroderma, and as I mentioned a lot earlier in this thread, we have dozens of pages on it, beginning at Causes of Scleroderma.

A few of the causes are definitive. I think part of the difficulty is that many of us have been exposed to many things which could adversely affect our immune system, which makes things even more difficult to pin down. And there may be many different causes, too.
Warm Hugs,

Shelley Ensz
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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.

#47 emmie


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Posted 05 January 2007 - 05:20 PM

As far as cause goes in my case I think predisposition, I had severe mono at 17, Raynauds came in '95, major stress for 2 years, '99-'01....during and after those 2 years, the symptoms of sclero and other diseases started "coming out". Didn't go to dr. about any of it until '04.

Since these diseases have changed the ideas and "dreams" I/we had for the 50's and beyond years of our lives, I am as concerned about trying to fight them back and be an example to my children and grandchildren. Life does not have to end or become second rate because of a "diagnosis" or two or three or......

It will be different. But I am really working on adapting my ideas and attitudes and ways of thinking. I don't want to come off like a Pollyanna. It is not easy. I get ticked off about it. I get sad. I get depressed. But I also believe that I was not meant to live as a big cry baby. So, I eventually find a way to get off the pity pot and back at it again. I don't want to be remembered as a martyr, or a "brave" woman, or anything exceptional. Just as a mom and grandma and wife who loved her family and enjoyed spending time with them and laughing and having fun.

In other words, the same way I would be remembered if didn't have a diagnosis or 2 or 3 or.....

So while it may be important for the researchers etc to find the causes and the triggers etc, for me right now, I'm putting my energy into finding the right way for me to manage my symmptoms so I can live a happy life.

Happy New Year!

xoxo emmie

#48 Patty


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Posted 06 January 2007 - 02:43 AM

Congrats Jennifer on getting married. I wish you years and years of health and happiness.


If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#49 Elehos


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Posted 06 January 2007 - 06:53 AM

Hi Emmie,

You certainly don't sound like a Pollyanna, and the only thing you can do with all the CTD's is fight tooth and nail. I've been doing it for decades as well, but simply became annoyed with the "happy-think everything away" mentality that could pop up. A postitive attitude is one thing, denial is another, and it sounds like you've got your head on the right way, Lady! I think you'll be remembered exactly the way you want to, not just with your family, but with all of us.

Shelley summed it up well with saying that it could be a variety of factors affecting our immune systems, and after reading the posts, it doesn't seem like it's a simple thing we're overlooking at this point. Mono seems to come up a lot, and it would be great if we found one or two particular viruses and nailed them, but so far the medical world doesn't seem to be looking in that direction.

Hugs and best wishes to you,

#50 Piper


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Posted 07 January 2007 - 11:18 AM

Hi, This is a really interesting thread. Oh, and I'm another who played with mercury as a child. lol
I believe my illness started from an e-coli infection. My father initially had contracted it from another person and I had a mild case of it from him. It eventually killed him after 5 years when one thing after another shut down. It was a very stressful time, looking after him and small children. It wasn't long after, that I started with joint pain and fatigue. We also have quite a family history of autoimmune disease with aunts and grandparents including rheumatoid arthritis, lupus, type 1 diabetes, graves disease and vasculitis. I also have a familial osteoarthritis that all the women in my family have including my teenage daugher.That I know is in the genes.
Hugs, Piper

#51 Dee


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Posted 07 January 2007 - 04:55 PM

A very interesting topic.

I think the cause of my scleroderma is directly related to (1) genetic predeposition (my sister has lupus) and (2) exposure to a toxin that killed over 1000 people (when I lived in Spain). I think the scleroderma was perhaps "dormant?"

But I have no doubt that my scleroderma was activated by a tremendous amount of (1) lack of sleep and (2) tremendous stress that I experienced 3 years ago. I spent months assisting my son as he went through a very messy divorce and caring for my grandaughter. He often said to me, "Mom, you don't ever sleep!"

Sounds to me like there are possibly many triggers that vary from person-to-person, but I feel prolonged, excessive stress and lack of sleep are high triggers.

Hugs to all,


#52 Katherine


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Posted 08 January 2007 - 01:23 AM

In my case I tend to think about stress as being the number one cause for my problems.

When I was 6 my father died and I was diagnosis with psoriasis shortly thereafter. Then my daughter was diagnosed with MS after the birth of her second child. then I was diagnosed with scleroderma after my divorce.

I wonder, could the psoriasis have opened the door for me along with the stress of the divorce?