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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 yogabear

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Posted 03 October 2007 - 09:16 AM

i saw my new rheumatologist a week ago and he says I have scleroderma. he says I have tendon thickening in my right index finger. I can't close it all the way especially when I first wake up. he's sending me for a colonoscopy, upper endoscopy, upper gi swallow/small bowel test, and to cardio for an echo to rule out pulmonary hypertension. he's also putting me on cardizem for raynaud's.
he believes I might have limited at this point. he did bloodwork for scl-70. no results yet.

to refresh you all I have nuclolar and midbody patterns. evidently the midbody is pretty rare.

i've been processing lately and have found myself having some anger issues lately. I tend to keep my cards pretty close to my chest, or so my boyfriend says. I don't share much with my family. it puts me in a very lonely place. I'm sure you all understand.

i guess once this sinks in I'll feel better.

anyway, glad you're all here.

sharon in washington

#2 Shelley Ensz

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Posted 03 October 2007 - 10:26 AM

Hi Sharon,

I'm sorry you have scleroderma but glad you have a rheumatologist who is taking things seriously.

A helpful thought for me is that anger always means we feel hurt. So it is time to hit the pause button and ask ourselves, why we feel hurt. It is amazing how that takes the focus off of other people (usually aren't we figuring they did something wrong?) and puts it back on ourselves.

Usually I discover that I have an attitude that could be improved. Sometimes it is just expecting too much from others or "assuming" things. It is normal to feel a lot of anger when we are first diagnosed -- such as, what did we do wrong to get sick, why didn't our doctor catch it sooner, hurt over the way it may change our whole lifestyle, upset because our friends and relatives don't seem to understand or worse, they act like they couldn't care less.

So give yourself some slack. You're going through a lot right now. While you are processing the anger, see if you can process it through all of the hurt in a way that gets you back on a path of love and acceptance, without disrupting any relationships with your boyfriend or your family -- they are also going through a difficult time, too.

Anyway, I'm glad you're here. And I wish you luck through all the testing, too.
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 MicheleM

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Posted 03 October 2007 - 11:08 AM

Hey Sharon - Michele from Atlanta. I understand your frustration and anger. It is so hard to hear so many tests coming at you and how frightening not knowing is. Once you get over the hurdles and the unknown is known you will feel better and figure out a game plan. Know the game plan will have many variations, but hang in there and roll with the changes. I was diagnosed in 2000 and have had many down times, but the up times have been more. I think because of sclero that I appreciate my good days or moments - most of the time! I hope you find some peace in these words and knowing we are here to listen and care! Soft hugs your way - Michele
Soft hugs your way,

Michele

#4 truman

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Posted 03 October 2007 - 11:34 AM

Hi there.......

When I was told 16 years ago, I ran from that doctor and pretended it did not exist until this past December when it became undeniable. Even with 16 years I did not allow it to sink in until the arm and skin from my elbow became one and the same. I've let it sink in now, and can manage to even say CREST when asked what my condition is. They nod and say oh, but I'm sure when they hit the internet, they're scared out of their wits looking up just what that is. Thing is, it's just my arm at this point, which is probably why I can allow all this to sink in..

One day at a time...........
Tru

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

#5 janey

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Posted 03 October 2007 - 05:00 PM

Hey Darlin'
Sorry to hear about your diagnosis. I know you didn't want to hear it, but at least now you know what to work with. As Shelley mentioned, it sounds like your rheumatologist is taking care of you by running the necessary tests to determine what is and what isn't happening. Please let us know the results when you find out.

The anger is a natural reaction, but eventually you will take things in stride. I know that's hard to believe right now, but it did happen to me after the first year. I did find, that the more I learned the more "in control" I felt. It was very scary having the doctors talk me in the beginning and not really understanding what they were saying. Once I started learning more about my diseases things became more matter of fact. You'll get there. Just work with your rheumatologist, ask questions and don't let him blow you off if you don't understand something.

But most of all - find that partner, family member or close friend that wants to know. I found it in my sister-in-law and I can't tell you what a jewel she has been. She always asks and she always listens. Then of course - there is always the family you have here. We're here 24/7!

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#6 debonair susie

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Posted 04 October 2007 - 07:40 AM

Hi Sharon... Janey and the others who offered help are real peaches, aren' t they ;) ?!
Janey's absolutely right, in that you have family here that understands too. Yes... processing takes time, but once you've gotten a handle on this, you'll find it easier to accept.
Hugs to you,
Susie
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International Scleroderma Network (ISN)

#7 yogabear

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Posted 04 October 2007 - 12:36 PM

a ginormous hug to all of you who responded. I needed a little boost and some tlc. I got that and so much more. thanks again.

it's so nice to know that I can feel safe to share my feelings and not be a burden to you all. I tend to be a bit stoic and don't like to inconvenience anyone, but the weight was getting a bit too much. I just need to protect my family from any more drama.

it's the unknown that's really bugging me. how will I be in five years? will I no longer look like the mom that my kids love so much? will I look like a stanger to them? if I do, will they mourn the loss of the mom they knew? will all of this cause them hurt that they don't deserve?

i know that there's a pretty darned good chance that I could sail through these next years and this "thing" could burn out and leave no trace that it was even here...and I could be a basically healthy lady til I'm old and gray. ok I'm already gray but it's premature so that doesn't count, lol.

what I'm trying to say is that I could have been getting all worked up for a lot of nothing. I does happen. this could crash and burn and leave me with only raynaud's. but I'm smart enough to know that I'm pre-disposed to have a bunch of junk thrown my way and I don't want my kids to be undeserving victims. that's what terrifies me. I can handle anything...except having my kids suffer. ouch, that hurts.

thanks again, you all. it's nice to officially be part of your "family".
sharon

#8 emmie

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Posted 04 October 2007 - 05:02 PM

Hi Sharon,

Sorry to hear of your diagnosis, But it's always nice to welcome a new member to our family. This is a very safe place to come to with questions, when you need to vent, when you have good news to share, when you feel lonely....no matter what, it's just a good place where people really understand. Don't be a stranger!

xoxo emmie

#9 jefa

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Posted 04 October 2007 - 11:32 PM

A few hugs from me, as well. You can never get enough, in my book. One thing you mentioned is how your kids will feel about you. Even those with normal health will change over time. It is unlikely that your kids will notice much about changes in your outer appearance because they will be there with you as you gradually morph into mom-five-years-on, whatever that may entail. The important thing is to keep your "inner mom" as stress free as possible. Odds are that any suffering they do will be of the normal angsty variety that everyone must endure as a right of passage.
Warm wishes,
Jefa

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#10 peanut

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Posted 05 October 2007 - 01:28 AM

yogabear,
welcome to the family. I too have found it to be an enormous support and very informative. the "unknown" is difficult and unfortunately sclero is full of them. I really do think though that it's all about attitude. worrying won't solve much but add stress and stress makes sclero worse. do what you need to, to find a positive attitude and a little humor in each day. I have interstitial lung disease caused sclero and one of my favorite jokes is my 84-year old lungs have applied for an AARP membership. My old body wants movie discounts too.

i also encourage you to find a local support group. it helps to know you're not alone and there are people near you - and here that will help you through.

best of luck,
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#11 Vee

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Posted 05 October 2007 - 02:32 AM

Hi Sharon,

I just want you to know that you're not alone in this anger thing. I went to a support meeting recently, and there was a guest speaker. She is a nurse who has studied the stages people with a chronic illness go through throughout thier lives, and they are the same as the stages of greif and loss. they are as follows:

Denial-Shock
Anger/Depression
Guilt
Bargaining
Acceptance

It was very interesting, because I have always viewed my sclero moods as a mourning process. As you can see, anger is one of them, and she said that we don't necessarily go through them in that order, but that we all go through them all at one time or other, and they do repeat themselves as we move on in life. So please know that it is "normal" to be feeling the way you are, and also please take comfort in knowing that it will pass and that we are all here for you.
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#12 debonair susie

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Posted 05 October 2007 - 06:14 AM

Dear, Dear Sharon... If I may be permitted to offer some loving advice?... Please don't anticipate as you seem to be... As time goes by, you will become empowered with a great deal of knowledge, which will then quell the angst you now seen to have.
As how you will look in 5 years?... Goodness... your children will be 5 years older, you will have been around them during that time and you will be the same loving mom you are to them now... their love for you will probably only get stronger and you, no doubt will be as beautiful to them... then... as you are now.

So... save your energy for the good things in life... your children, etc.

Hugs, Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)