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Biomarker for Diffuse Scleroderma skin has been discovered!


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Feeling better these days


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#1 smac0719

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Posted 17 February 2009 - 02:19 PM

Good evening all. I've had so many days where this disease has just beat me down that I had to mention that I have been feeling better. The crazy part is I didn't realize it until someone asked me how I've been feeling.

My Sclero specialist increased my methotrexate dose in December to 25mg. I wonder if that had something to do with it. I have also noticed that some areas of my skin aren't so tight anymore. Boy will the doctors sure be pleased if it lasts until my next visit in June!

I've seen some people post that they have experienced a remission after several years of discomfort. I hope this is truly what it is and it lasts for a nice little time.

I still have some Raynaud's issues (but not as frequent) and I get muscle pain, tenderness and soreness in my shoulders pretty often still. I think it has been much more bearable though without the constant fatigue.

I have still been trying to take it easy and not overdo it, but it feels so good to bend, stretch and to get up and go a little more that I'd gotten used to over the past few years. It's been great to come home from work and not crash! I have even started exercising on a regular basis.

I'll keep you posted!!
I may have Scleroderma, but Scleroderma doesn't have me!

#2 Shelley Ensz

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Posted 17 February 2009 - 04:21 PM

Hi Smac,

Well, I hope you are enjoying a bit of a remission due to the meds finally kicking in. For me, any time I have any relief from fatigue (more endurance with less backlash of fatigue after exertion) I consider it a remission even if other symptoms are the same or worse.

That's probably not how the doctors figure it -- but I say we should rejoice and do the Sclero Happy Dance any time we have any relief for any period of time from any symptom! It does happen, sometimes for long periods of time, and I think we truly appreciate it because it feels so good when it quits hurting, doesn't it?!
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.

#3 barefut

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Posted 17 February 2009 - 07:27 PM

Yay Smac!

Good for you with the regular exercise. I wish I had the discipline.
I am so glad to hear you are doing so well. I hope it lasts a good long while for you.

Shelley, I'd like to see the sclero happy dance! Maybe we should post videos of our own versions and make it a contest. Who wants to be the judge? What could be the prize?

#4 Amanda Thorpe

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Posted 18 February 2009 - 02:17 AM

Hello Smac

Way to go!

You know when we feel better, however briefly, we achieve more and appreciate more than "normal" people who take feeling good for granted.

I hope this lasts a long time for you so much so that it's a turning point for you and you don't look back!

Regarding the sclero dance, I want to be a judge: "It was hideous, I mean really, really hideous!" See I can do it. :lol: Of course I would be referring to my own sclero dance!

Take care.

Amanda
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#5 ozzy69

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Posted 18 February 2009 - 03:01 AM

Horray Smac,

I am glad you are feeling better.. Have fun and enjoy it... :)

Hugs,
Nina Lynn

#6 Shelley Ensz

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Posted 18 February 2009 - 04:24 AM

Okay, Barefut, I'm game! You do a video of the Sclero Happy Dance and send it to me. We'll post it and let Amanda be the judge. Just be forewarned, Amanda already has her lines prepared, "Hideous, really hideous!". I think I could toss in an "Atrocious, really atrocious!" free of charge (because people adore controversy and negative opinions, so this will increase your viewership dramatically!) and then Jefa could ameliorate the situation by voting you up to the next level of competition, anyway.

Please consider this seriously, Barefut. It could help raise awareness of scleroderma, or dancing, or perhaps even propel Amanda's career forward as a dance competition judge! :lol:

The moral of this story, of course, is that there is nearly always a bright side to scleroderma -- even if it is watching hilarious videos of various Sclero Forums members attempting the Sclero Happy Dance during those moments when the symptoms are just a tad bit better than usual.
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.

#7 razz

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Posted 18 February 2009 - 07:46 AM

Smac0719,

I am thrilled that you are feeling better! When you don't notice feelings of fatigue or aches and pains as much as before that's great news.

Shelley,

Of all your many talents, you must also be a mind reader. I have wondered what the Scleroderma Happy Dance would look like. I have done my own version of it, with my skinny arms flailing about and kicking my legs back and forth. Although very few people have witnessed this scenario. I wonder if there's a Scleroderma Dance competition in the forecast? Hmmm. ^_^

LOL,
Razz
Live well, Laugh often, Love much

#8 Shelley Ensz

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Posted 18 February 2009 - 07:58 AM

Razz, you, of all people, certainly know how to make a Sclero You Tube Video for Sclero Forums. I think I can definitely see a Sclero Happy Dance Video in our future! :rolleyes:
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.

#9 razz

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Posted 18 February 2009 - 08:27 AM

Shelley,

Perhaps we can have Scleroderma Dancing for Awareness. Of course, I wouldn't want to be the only dancing participant in the spotlight.

So, let's all polish our dancing shoes and come up with our Scleroderma Happy Dance! I'm going to start working on my dance techniques right away! I know there's plenty of other dancers out there. Come on everyone, join in! Besides making you feel good, it's fantastic exercise.

I'm dancing the blues away, :lol:
Razz
Live well, Laugh often, Love much

#10 Amanda Thorpe

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Posted 18 February 2009 - 12:04 PM

Actually I feel that Shelley, as member number 1 has an obligation to be the first to demonstrate the Scleroderma Happy Dance :lol:

If I had the equipment and know how to video myself and upload it I would. Please be advised that I would simply be making a complete idiot of myself and no one would find it as hilarious as me nor watch it as many times as me. I am my own fan club...see I really AM Simon Cowell!

Amanda
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#11 smac0719

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Posted 18 February 2009 - 01:35 PM

Thanks everyone and I have gotten the biggest laugh off the Sclero Happy Dance.

Barefut,

I have not exercised in a long while so I have been taking it slow, but determined to establish a regular routine. My 18 year old has been "coaching" me, but forgets that he's still in high school and has not obtained a degree or certification in personal fitness. :lol: He has been a great support though and just has to remember I still have limits.
I may have Scleroderma, but Scleroderma doesn't have me!

#12 Helen

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Posted 18 February 2009 - 04:44 PM

Hi Smac

So glad you are feeling so good. You sound a lot like me. Since I have been on Methotrexate and Plaquenil I have been feeling really good, too. I still get a bit fatigued, but nothing like I used to. Can't remember the last time I took a painkiller. I even feel like dancing! :lol:

Seriously, I can't wait to see some Sclero dances. :wacko: I couldn't dance before I got this, so I don't think you'll be seeing a video of me, although I was a keen line dancer for 3 years.

Happy dancing everyone!

#13 barefut

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Posted 18 February 2009 - 05:58 PM

I like Amanda's idea! Shelley, you go first and I'll be 18th.

I'll be working on my dance in my 'spare time' HA-HA! :P When I have it all choreographed, I'll get my 11 year old do all the techie stuff.

But don't you all hold your breath!

I'll bet Razz could Dazzle us! Take it away Razzle Dazzle! :D

#14 razz

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Posted 19 February 2009 - 08:06 AM

Barefut and Amanda,

I agree wholeheartedly that Shelley being member number 1 should lead and be the number 1 happy dance!

If I end up laughing at my own stiff dancing, then it has to be side-splittingly funny. Try and imagine the tinman (only very skinny) from the wizard of oz dancing, that's me. :lol:


Razz
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#15 Shelley Ensz

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Posted 19 February 2009 - 11:30 AM

Oh c'mon, you guys. Being fiscally and physically responsible, plus terribly shy and out of shape, I would only do the Sclero Happy Dance for $1 million or more of ISN donations, that being a fairly safe threshold to keep me from ever having to perform.

But we could have quite a fun fundraiser with online bidding wars for Sclero Happy Dance tapes. For example, I'd pay really good money, including tons of money I don't even have, for a chance to see Jefa do the Sclero Happy Dance!

My granddaughter does a really great Clean Kitchen Happy Dance. Maybe I could have her stand in (oh, er, okay, dance in) for me? For those who wonder exactly how boring it gets in Minnesota during the winter, now you know, not at all. That's because we liven it up by celebrating even the smallest things, like cleaning the kitchen and setting the table after each meal.

Or, having even a few precious moments when one or more symptoms relent. A meal without heartburn? An hour with less pain? A brief chill with no Raynaud's? An afternoon with no need for a nap? Etc. ad infinitum. I see millions of Sclero Happy Dances must be taking place every day among us. So one, two, three...start dancing, start taping...
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.

#16 TJ903

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Posted 19 February 2009 - 01:46 PM

I'm in as well, might be just the thing I need to boost my emotional meltdown--

#17 Shelley Ensz

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Posted 21 February 2009 - 03:25 AM

Hi TJ,

I'm sorry you're in a meltdown. I know how that is! Did the Sclero Happy Dance help to restore a bit of your spirits yet?
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.

#18 Purr

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Posted 21 February 2009 - 08:14 AM

How about a song to go with our Happy Dance??
Love makes the world go around!

#19 Penny

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Posted 21 February 2009 - 07:52 PM

The Happy Dance Song

(sung to the tune of "It's a Small World")


When I woke up this morning
And jumped out of bed
It occurred to me
That my pain was dead
I pranced across the floor
And like never before
I was doing the Happy Dance

It's a Happy Dancing Day,
Because my pain has gone away,
And my skies are never gray,
On a Happy Dancing Day!

On days when things,
Are not as good,
And my spirits fall,
It's still understood,
That soon there could be,
More dancing for me,
And another Happy Dance

It's a Happy Dancing Day,
Because my pain has gone away,
And my skies are never gray,
On a Happy Dancing Day!

It's a Happy Dancing Day,
Because my pain has gone away,
And my skies are never gray,
On a Happy Dancing Day!


The dance steps for this are very easy, just watch any toddler giving their best diaper boogie and follow along. Arms bent and held in close to your side, knees bent with lots of tush wiggling and a huge smile!

Penny

#20 barefut

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Posted 22 February 2009 - 10:40 AM

Penny,

I LOVE it! Thanks for the huge smile this morning!

Shelley,

That's a really good idea for fundraising you know! Especially if you start the bidding at about 100K. I would make a fool of myself for no less. (Still working out self-esteem issues and have some pounds to lose <_< )

I already have my dance choreographed in my head. Waiting for a Happy Dance Day to practice it. Just to give you guys a visual, it starts out with me and a cane, trying to get out of bed. Then it goes into a little soft shoe shuffle and ends with me twirling my cane like a baton and tossing the out the window. Still picking out the music.

I'll start the bidding on Jefa's Happy Dance at $100!