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First time dealing with Scleroderma


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#1 PHYLLIS.G

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Posted 29 April 2008 - 05:36 AM

When I was first diagnosed with scleroderma several years ago I had a very positive outlook about it. I thought I'm young, in good shape and take care of myself, I can live with "cold fingers" once in a while this won't effect my life much. Today, not so positive...
I'm very very angry about the changes in my life.
Thinning hair that is getting so noticeable that I wear a ball cap when I'm out with my friends. I'm going to a dermatologist and have been using products for this for years but it's not helping, iI still notice it.
I have seen first hand a person who's mouth has been effected with scleroderma. I took a long hard look in the mirror and I noticed not only is my hair thinning but I now have a receding mouth!!! How do you deal with that!
I have a lack of engery and heartburn all the time. My relastionship is suffering because I'm angry all the time.
How do I explain to others whats going on when I don't understand it myself?? It's embarrassing. I feel like I'm on a runnaway train and there's nothing I can do to stop it! What is there to look foward to when I know it's only going to get worse...

#2 TJ903

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Posted 29 April 2008 - 07:00 AM

Phyllis,

First off - stop and take a deep breath and know that you have come to a place of amazing people with insight and knowledge that can help you ease your burden.

I was diagnosed 01-04-07 with rapidly progressive systemic sclerosis and believe it or not, felt exactly the was you do. The great support system here came to my aid immediatly. They told me to try and take each day at a time and not look too far into the future. We have a tendancy to overwhelm ourselves with 'internet' info and that can be scary. They told me to expect that and also to expect that during my first year, I would learn that I can deal with it and could even laugh. I did not believe them, but I was so wrong!!!!

When our hair is thinning- we can 'wig out' literally. I can be a diferent personality with each different look! My mouth is small ( save on the costs of lip products) and I've learned to smile more so that the small mouth is not so noticeable.

All of your symptoms can be treated, you need to educate yourself and ask us for help and support. The train is not 'running away' and we are your brakemen so to speak to keep you on the right track.

We have fatigue, down days, days without humor - those are the days you get online for a dose of hope, humor and fellowship. There are a lot of tricks that we have and a really good story called 'The twelve spoons' at least somewhere on here.

Can someone help her find this? It will help your boyfriend too!

I am so very sorry for you and know that my thoughts are with you. I am available for PM anytme for things you can't post here. USE ME< USE THE FORM< USE THe COLLECTIVE KNOWLEDGE OF THE MEMBERS. We'll do our best to help you

#3 Sweet

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Posted 29 April 2008 - 07:56 AM

Hi Phyllis,

Welcome to the Sclero Forums love. My heart goes out to you in the feelings of despair you are having. We've all been there. I've been diagnosed for 8 years now and I have the same feelings as you off and on. They wax and wane but are always there. I'm going to give you a link to emotional adjustment that may help. After you've read that, we'll keep slipping you a few more to help get through the rough spots.

This forum is filled with a bunch of really amazing people that have kept me going through everything. Read often, post when you feel like it and we'll be here for you.
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#4 Guest_Sadie_*

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Posted 29 April 2008 - 08:10 AM

Phyllis,
Welcome to the board! This is a great place for support and info! I've made so many
new friends on here. I'm so sorry to hear that you're going through a rough time. I was diagnosed 18 years ago with Sytemic Scleroderma. I've gone through all the emotions that we all go through. I still go through them. Feel free to send me a PM if you want to talk.
I wish I could give you a {{{{{{Hug}}}}}}

Sadie

#5 Sheryl

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Posted 29 April 2008 - 08:34 AM

Phyllis, welcome to the sclero forums. What TJ was referring to is called the Spoon Theory. It is so helpful when explaining to others what is happening to you on any given day. There is a link on the site which I will try to locate. We had a good discussion about it in chat a couple of weeks ago. It is a very good way to explain to someone who doesn't understand how limiting a chronic illness can be.
Strength and Warmth,
Sheryl

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#6 Sweet

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Posted 29 April 2008 - 08:46 AM

Here's a link to "The Spoon Theory" that Sheryl talked about, in the event you want to share it with those around you.
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#7 Snowbird

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Posted 29 April 2008 - 09:42 AM

Hi Phyllis.G

I wish I had the right answer....but unfortunately, it all takes time to adjust to. These things are so difficult and because of that they are even more scary to us because we never know what might happen, if it might happen, when it might happen...and as we all know, that list goes on. All you can do is try really hard to take things one at a time and one day at a time. Share things with your partner, if you can....they feel helpless sometimes too because they want to fix things for us but don't know how...but they can help alot by just being there and being supportive (it's easier for them to do that for us if they can understand our worries/fears). It's good for you to talk things out as well when/if you're ready, that's what we're all here for (to help each other!). Don't hesitate to PM me either.
Sending good wishes your way!

#8 truman

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Posted 29 April 2008 - 10:16 AM

Phyllis:

I denied it for 16 years. It was scary and there was nothing on the net about it. When I was diagnosed again last year by the rheumatologist, I knew I had to deal with it; what's the alternative? Giving a condition a name is not going to change the condition. Outlook is a big part of progression; I firmly believe that. I think that's why for 16 years, virtually nothing happened.

Don't despair over this; move on. Keep doing what you're doing and take symptoms one at a time. Get to learn your friends here. You'll find messages, thoughts, ideas, etc. 24/7 here. If I get up at 3 AM, I'll pop on here and post a thought as do others.

Don't let this ruin your relationship. One day, one step at a time. Don't put the cart before the horse. You lost hair, I lost a toe; there are so many of us here who have suffered to some degree. As long as I can get up, move around, do for myself and feel good, I can forgive losing the toe.

Chin up Phyllis, you can count on us.
Tru

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

#9 PHYLLIS.G

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Posted 29 April 2008 - 11:09 AM

WOW, I'M SORRY FOR THE "PITTY PARTY I HAD. YOU LOST A TOE?
CAN I ASK, DO YOUR FINGERS GET REALLY COLD AND TURN A
BLUEISH/BLACK?? MY FINGERS WILL GET LIKE THAT AT WORK AND
I WONDER IF I'M NOT GETTING ENOUGH OXYGEN THEN I COULD LOSE MY FINGERS!!??

#10 PHYLLIS.G

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Posted 29 April 2008 - 11:12 AM

THANK YOU SO MUCH FOR YOUR KIND WORDS. I AM SENDING THIS FROM WORK AND WANTED TO LET YOU KNOW THAT BEFORE I LEFT.
PS
WHAT IS PM???

#11 janey

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Posted 29 April 2008 - 11:37 AM

Phyllis Darlin',
Pity parties are allowed here! :) We all give ourselves one every once in a while and by George - we deserve it. Those physical changes are the hardest to deal with - we may not look like we used to and we certainly don't feel like we used to. It's a struggle at times, but life does exist even with scleroderma. We just have to find those things that make us happy that we can still do OR haven't done in the past. And if we do them a little slower, then so be it.

I hope you read through our emotional adjustment page that Sweet provide a link to. It's definitely shows that what you are going through right now is quite normal and then provides things that you can do to help get through it. I do feel that you will benefit tremendously just having joined us here at ISN. It's a great group of people and a wonderful source of information.

BTW - PM means Private message. If you look at the bottom left of each posting you'll see our "Send a Private Message" box. So for example, you want to PM TJ, just go to her posting and click on the green box at the bottom of her message. You can then write to her personally.

Welcome Darlin'!
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#12 truman

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Posted 29 April 2008 - 11:48 AM

Phyllis:

It's not a loss of oxygen but rather the extreme drop in temps that causes the Raynauds and yes that's why. My office kept temps at a grueling antarctic. We weren't allowed space heaters but when I started demanding my rights as being ill, I was allowed to keep one.

As far as a pity party; why not, we all need to vent, and it's at that party that we all realize reality and bring each other up. Invite me anytime you have the pity party; I'll bring the refreshments! :)
Tru

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

#13 PHYLLIS.G

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Posted 29 April 2008 - 12:55 PM

hey truman,
i admire you for your strength. 16yrs is a long time of not knowing or being diagnosed with a disease and that's what it is is'nt it a disease.
How hard it is to come to grip saying that about myself. I have a disease!
It's crazy, when I was first told of scleroderma I was'nt too worried cause my only symptoms were the "cold fingers". now my fingers are "fat"/swollen all the time " I"m a little scared about this. I just don't know what to expect from it...

#14 omaeva

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Posted 29 April 2008 - 12:58 PM

Hi Phyllis!

I just wanted to welcome you and say Hi!
Sorry you're going through so much emotional stress right now. But aside from what everyone else already said, I think sometimes freaking out a little is good. Gives us an opportunity to let it out and then compose ourselves and finally deal. At least it's true for me.

This site is a fantastic resource for support and information.

#15 Shelley Ensz

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Posted 29 April 2008 - 01:05 PM

Actually, we're more than a little weird around here, as we are entirely in favor of a reasonable amount of freaking out with a few royal pity parties thrown in! It's just all part of learning how to make a good adjustment to life with scleroderma and it's abundant peculiarities and challenges.

We've all found that about the best way to deal with anything is facing it head on, with a very healthy dose of humor. That's why our main site is home to the World's First Virtual Pity Party! And everyone is always invited, the party is open around the clock. The music playing is, of course, It's My Party and I'll Cry If I Want To...

If you feel capable of wallowing in a good dose of self-pity, you may visit it now at:
http://www.sclero.or...mor/a-to-z.html

But fair warning, if you are too happy-wappy, our mysteriously empathetic servers will detect it, and kick you out of the party.
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#16 Margaret

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Posted 29 April 2008 - 02:06 PM

Hi Phyllis ,

I just wanted to say 'Hi' and let you know that I am the Mom of a kid (19 years old) with UCTD who has other *issues* too. Anyways, we had a discussion with his child psych today and he reinterated the fact that autoimmune diseases can cause autoimmune depression. The same antibodies that attack the body cause the Serotonin levels in the brain to drop....thus, the depression/anxiety/why-oh-why-me-outlook. If you are really bummed about life and sclero, then see your doctor and maybe meds will help get you over the depressing aspects of living with sclero. This site has been a blessing for so many of us.

Take care, Everyone.
Margaret

#17 GocartMoz

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Posted 29 April 2008 - 02:54 PM

Hi Phyllis,

Just wanted to join in and welcome you to the board. We have all had our own trials and tribulations. Freaking out is something I have become an expert in. We probably all have. Only thing you can do is be your own advocate, get medical care from doctors you trust and who listen to you and ask alot of questions. Other than that, do the things you enjoy and are able to do and give yourself a break when you need it. This board is a shining example of those who have lived very long and happy lives notwithstanding this disease. Good luck with everything.

#18 Lady Deb

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Posted 29 April 2008 - 03:48 PM

Hi Phyllis,
Welcome to the group. I agree with everyone when they say take it one day at a time. This is a great group and they know how to help through the over-whelming times and positive times. I must say that I found the spoon story very inspiring and the pity party very funny. Sometimes laughter is the only way I get through some things :lol: Smile there's a lot friends here for you to lean on.
Lady Deb

#19 Karenlee

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Posted 30 April 2008 - 01:07 AM

Welcome Phyllis,

You have come to the right place for venting, support, questions, and just plain yammering on. I'm sorry you feel so overwhelmed. We all do at some point.
I lost my hair at 19, so I fully understand the pain of that (especially being a woman, no offense to the males on here) can cause. Watching your body/skin changing is very scary. I felt just as scared as you when I first joined here, but it's the best thing you can do, to surround yourself with people that truly understand and care about you, as we do.

My best 2 peices of advice are: 1. Stay away from the web 2. Find a good doctor that you can feel confident with and cared for.

Karen

#20 jefa

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Posted 30 April 2008 - 02:32 AM

Hi, Phyllis. I see you are in good hands here with advice from so many good friends, but I just wanted to add my welcome and extend a good virtual hug.
Warm wishes,
Jefa

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