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New Member - Karenlee


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#1 Karenlee

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Posted 24 March 2008 - 05:41 AM

Hi everyone. This is my first post on this forum. I can't tell you what a comfort it is to have others to talk to about these issues. I am recently diagnosed and completely anxiety ridden.
Anyway, I have the red spots on my face and hands, and some on my chest.
My dermatologist told me to put vitamin K cream on my face and that may help. It can be found in natural food stores. I just started a couple days ago, so I will keep you posted as to any progess (if any) on the red spots.

And yes, I love the upside of no wrinkes. At least we have that going for us huh? ;)

#2 Sweet

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Posted 24 March 2008 - 06:18 AM

Hi Karenlee,

Welcome to the Sclero Forums. I'm so glad you've joined us, but sorry to hear of your recent diagnosis. If you have any specific questions that we could answer for you to allay your anxiety throw them out there for all to help you.
Warm and gentle hugs,

Pamela
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#3 Sheryl

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Posted 24 March 2008 - 06:45 AM

Karenlee and Ted's Wife,
Welcome to our giant group of wonderful friends. We love to help and learn what ever we can when we can. If anyone new isn't sure how to send private emails or a private post to people in the group. just click on their name on the left side of any of the persons posts. Sometimes when a person is new it is very hard trying to figure out how to send an email if the person didn't give you their email address. I hope you enjoy our group as much as I do. Sheryl
Strength and Warmth,
Sheryl

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#4 Karenlee

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Posted 24 March 2008 - 07:03 AM

Thank you so much Sweet and Sheryl. I'm still trying to learn to navigate this forum so bear with me Lol.
I think the worst problem I am having is not really understanding and knowing what it going on with my condition. I was diagnosed with Raynauds about 3-4 years ago, but thought "I can live with this, I'll just have to try to keep as warm as possible". Recently I was told by my primary physician to see a Rheumatologist, so again, I thought, ok, arthritis, I can learn to live with this. I saw a Rheumatologist who told me the term CREST and to see a Dermatologist. My Dermatologist was awful. He was whispering the word "Scleroderma" to the nurses in the office, while he was taking pictures of my face, hands and back. He gave me a tube of cream and told me to come back in a month. I left scared, stunned and confused. So of course, I googled the diagnosis when I got home and nearly passed out from fear and anxiety. I have an appointment tomorrow to have a Dopplar procedure on my hands to check blood flow. So as you can see this is all new and very scary. Will my face harden up like my knuckles are? Will my internal organs fail? How long do I have to live? It's all too much to bear at times.
Again, I am so grateful to have people to share my story with and thank you all for being so kind.



#5 jefa

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Posted 24 March 2008 - 07:24 AM

Hello, Karenlee, and welcome to the ISN Sclero Forums. Finding out that you have scleroderma can be a very scary thing indeed, especially when you have people whispering behind your back. In some ways, however, you have had it very lucky for all the doctors to have come together with the diagnosis and move along with appropriate treatment. There is no one way for the disease to progress in an individual as you will find reading around a bit in the forums. I am including a link for our page on Emotional Adjustment as you will find many useful links, including an overview, coping strategies, pain management and quality of life. We have all been where you are at one point.
Warm wishes,
Jefa

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#6 Karenlee

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Posted 24 March 2008 - 07:38 AM

Thank you Jefa for the links. I am sure once the shock wears off and I have more solid information I will have better coping skills. For now I am taking Xanax for the pannick and Lunesta to help me sleep.
I am lucky in that I do have a team of doctors that are keeping up on me. I just think I will have to find a new Dermatologist. One with a heart perhaps.
Thanks to all of you again for being so kind. This forum has made me feel better already and I don't feel as alone and scared.
And I must say thanks to my wonderful husband who has been a gem thru this. The poor guy (besides listening to me go on and on about this) has taken over a lot of the household chores since I am no longer able to to many things. All this on top of working full time.

#7 janey

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Posted 24 March 2008 - 08:06 AM

Hey Darlin',
I'm so glad you found us. In addition to our spouses, partners and friends, it's always nice to be able to talk to people that can truly relate to what we are going through. We've all asked those same questions. Unfortunately, there is no one answer because this crazy disease is different for everyone.

We do have a great page on CREST, a form of limited scleroderma. You might be able to find some answers there.

It sounds like you do have a good team of doctors, and as you mentioned, one with a heart. Gotta have that one. smile.gif A supportive partner is also important. It makes this road so much easier to travel. But remember, you both need a break from it once in a while, so try to do things together that you enjoy. Go to a movie, a concert or take a picnic in the park. Life is different now, but it's still fun if you work at it.

Big hugs to you and the hubby,


Janey Willis
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#8 Karenlee

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Posted 24 March 2008 - 08:14 AM

Janey you are so right on with that. Our 2 year anniversary is coming up in June and he keeps asking me what I want to do, but my head has been in the clouds since this whole mess started that I can't even give him an answer. You are right, I really will try to keep living and not lay down to this disease.

If I havent said it already, thank you all so much for your warm loving support. You have to know how helpful it is. I never knew complete strangers were so selflessly kind. :) I just hope someday I have some words of wisdom to pass on to you all that will help others.

Peace.

#9 peanut

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Posted 24 March 2008 - 02:17 PM

I'm late piping in but I wanted to welcome you also. You're lucky to have good support especially since you're new to all this. It really is so overwhelming. Take care of yourself, treat your self since stress can also aggravate scleroderma. What a fantastic reason to go get a pedicure or a margarita...

peanut

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

#10 barefut

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Posted 24 March 2008 - 07:24 PM

Karenlee,

Hi and welcome. Just wanted to let you know you're not alone in your anxiety and fears. As Jefa said, we have all been through that. The key words there are "been through" and we made it to the other side where there is knowledge of our disease, support and comfort from our peers here at ISN and with that comes peace. You will get there but it takes time. Keep us posted on you!

#11 Karenlee

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Posted 25 March 2008 - 12:37 AM

Hi barfut and peanut,
I just couldn't wait to come back on here today and get to speak with you wonderful people.
I am off to have a Dopplar done on my hands today to check the blood flow back to my fingers. From what I understand they will submerge my hands in ice water and then track how long it takes for the blood vessels to open back up. Am I scared? Absolutely, but I know this is just part of treating this bizzare disease.
I have been trying deep breathing techniques and have my trusty bottle of Xanax in my purse just incase.

I wonder if any of you have had this procedure and what if any help has it given you?

(((hugs)))
Karen

#12 Peggy

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Posted 25 March 2008 - 04:07 AM

I am late in welcoming you...........but Welcome. I am fairly new to this also having just been diagnosed last August. This forum has been a life saver for me as I am always coming here with questions and advice and everyone is so very helpful. Having the support of your husband is worth more than words can say. I know my husband probably gets tired of seeing me in pain and having to rest so much but he never says anything. This disease can take so much out of you and if you have a support system to turn to makes all of the difference. There have been some days that I am so down and so sick of it and I go to this site and ask a question or just read what others are going through I realize that I'm not alone.

Good luck on your test. I haven't had that one. I have systemic sclero with Sjogren's and Raynaud's and also Polymyositis. I have some lung involvement and have terrible time with gastro problems and skin issues. I am in the process of having to appeal my insurance company as they have denied IVIG therapy that I believe I easily meet the criteria to receive. It's having those issues to deal with makes this disease hard also.

I also received great advice from people here in this forum when they told me to deal with health professionals that know what sclero is and have that specialty or it can be a waste of time as it is such a complex disease. They were right when I had to go to the emergency room and told them I have scleroderma and the doctor on call had no idea about the disease.

Take care and good luck.

Warm hugs.

Peggy

#13 epasen

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Posted 25 March 2008 - 04:30 AM

Welcome Karenlee, you've come to the right place! I hope you can find advice and help from here. Enjoy your stay, Emmi

#14 Karenlee

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Posted 25 March 2008 - 06:45 AM

Thanks Peggy and Emmi,

I had my doppler done today. The only thing the technitian would tell me was that I have a lot of swelling and inflamation. She said the Doctor has to review the actual sonogram results with me. Now I just have to wait until next Wednesday to go back to my Rhumetologist for a consult on my blood work and the doppler results. I suppose that's when I will get somewhat of a diagnosis. All I know at this point is that I have CREST with Scleroderma but I don't know much past that.
The waiting is the hardest part. Imagining what will happen to me, sometimes your mind can race and take you places you shouldn't go. So for now, I have all you to keep me somewhat sane and I appreciate all of you wonderful people!

(((hugs)))

#15 Snowbird

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Posted 04 April 2008 - 03:35 AM

Hi Karenlee

I'm late for chiming in too (I've been away)....welcome aboard! I'm fairly new to this as well (I joined in November)....I have Systemic Scleroderma CREST, Limited. Can't say it didn't scare the you know what out of me, because it definitely did too!! It takes time to absorb what might or might not happen, that kind of news is so unexpected and such a shocker...time will help and all the wonderful people on this site! Sounds like you do have a good team of doctors, that's really good.
Sending good wishes your way!

#16 Karenlee

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Posted 04 April 2008 - 06:30 AM

Thanks for the warm welcome Snowbird. Nice to meet you. Albeit under these circumstances.
Yep, I was pretty much a walking zombie for a couple of weeks until I had an actual diagnosis. Unfortunately I had a bad Dermatologist who made me horrified, but my rheumatologist is an angel and I'm so lucky to have him looking after me.

Plus this forum is so comforting. The most wonderful warm people on here. :)

#17 Cheri

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Posted 04 April 2008 - 07:36 AM

Hi KarenLee,

I'm pokey too - I had other things going on in my life and am just getting back to this. So, a big welcome. I know it's scarey when you don't know what's going on. I have recently been diagnosed with CREST Limited (in November) and I was really scared too. My original doctor gave me the diagnosis and told me not to read about it on the Internet until I saw the rheumatologist. So, of course, I immediately came home and read everything and was scared to death. Since becoming part of this site, it has really helped. There are so many warm and wonderful people and such great support. Now I have found that the more I know (the facts), the less fearful I am. At least it works that way for me. Or at least now it does. I guess too, with time, it always helps.

Hugs,

Cheri

#18 Karenlee

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Posted 04 April 2008 - 08:01 AM

Hi Cheri!!

Haha you sound just like me! I googled my brains out after I heard the words CREST and Scleroderma and nearly passed out from fear. I wanted to know everything there was to know about it. Although it was a bit overwhelming, the upside is we found this forum and all came together. :)

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Posted 04 April 2008 - 09:41 AM

Karen, I have the red spots on my face, neck, arms and tummy. I just use lotion for them. People always think I have a rash.
Sadie

#20 Karenlee

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Posted 04 April 2008 - 09:50 AM

Hi Sadie,

When they first started appearing on my face, my sister thought I was drinking too much and had gin blossoms :P