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razz

I'm new here too...

39 posts in this topic

Hi everyone!

 

I've been hanging around for a while and finally thought I'd take the plunge into your forum. The ISN forum was recommended to me by someone very special here and I see a few of my friends posted here. My name is Doris (I like to use Razz) and I've had systemic scleroderma for 10 years now. When I was first diagnosed with scleroderma, I had never heard of it before, nor did I have a clue what to expect. I am stubborn by nature, and it takes a lot to get me down, but I was determined to beat this thing called scleroderma. Boy, did I have a wake-up call.

 

I went through the wringer physically and emotionally, tried all kinds of treatments and doctors and am glad to say I'm still here. Scleroderma didn't beat me. I look different now. I call it the new and improved me! I'm not a clean freak any more, I stop and take in the beauty around me, and I'm more patient with myself and others.

 

I have my days, as we all do, but I get through them. But it's always easier when there's other people helping and supporting you. I've enjoyed reading your posts and appreciate the support you give each other. Thanks for listening and keep up the good vibes!

 

 

Razz ^_^


Live well, Laugh often, Love much

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Hi, Razz. So nice to meet you - wish it could have been under different circumstances. I am glad you finally decided to start posting and I look forward to getting to know you better. Please let us know if you have any questions or particular concerns.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Razz~ What a cute name :)

 

So glad to meet you. Looking forward to hearing more about you. I am not a clean freak anymore either. Don't know if it comes from having 2 boys or having scleroderma :lol:

 

Patience is something I am still working on. I've got time...


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hi Razz:

 

So nice to meet you. Barefut, I'm definitely am no clean freak anymore either; and yes, it comes from having 2 boys. All kidding aside, the boys became the clean freaks :lol: .

 

Razz, I believe attitude plays a large part in how our bodies deal with abnormalities. This site is wonderful for support as we all share a common denomination. Just to be able to get on this forum, ask a question and get responses from others with been there/did that, is an important tool. Just to be able to reach out and quell someone's fears, share their happiness, etc., has been invaluable.

 

I'm sure we'll all get to know each other better through the days, months and yes; the years :lol: .


Tru

 

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

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Hi Razz,

 

Welcome to the forum, you will be lots of wonderful and warm hearted people here!

 

big hugs,

Irene

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Welcome Razz~~

 

I totally relate to the laid back attitude! I notice that I drive more peacefully now too, besides not cleaning a whole lot. :rolleyes: Nothing upsets me very much as a whole. I realize that life is short and it's ment to be enjoyed slowly and conscientiously. Hope you enjoy the comraderie here, it''s the one place where we truly understand. Peace.

Karen

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Welcome Razz,

 

I never was a clean freak, but now I just have an excuse :lol:

I'm glad you found us. You sound like you have such a good upbeat attitude, which is priceless when it comes to dealing with sclero.

 

I look forward to getting to know you.

 

Karen

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Hi "Razzledazzle"!!! :) Glad you made it!! I've been looking for you. That's a very nice picture. How's the garden doing?

 

Christy


Love makes the world go around!

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Christy:

 

Is Razz a friend of yours :) ? My friend visits this site too, but I can't seem to get her to post and join us :( . Maybe give a yell out to Patti to get on the band wagon. She knows more about me and whats going on from this site, then just from us being good friends.


Tru

 

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

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Welcome, Razz!

I am so glad you decided to join the forum. It's a great place for support. You have a great attitude! I find that I really appreciate the little things more now too. I tell my husband and son that the sticky stuff on the vinyl floor is ok because it works the leg muscles when you have to pull your foot off of it. :) I am all excited now because the ramp is almost done on my house. I am not in a wheelchair , but the steps going up to my house are so steep my husband and I decided a ramp was a good idea. I am just getting over a 27 week stress fracture in my foot. It feels good to wear two shoes again.

Take care,

Nan

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Thanks for the warm welcome you guys! Christy, hey I finally poked my nose in...it takes me a while before I feel I can dive in, but I did it! It's funny because I recommended this site to my pals, yet I held back. By the way the garden is coming along great. The tomato plants are about 2.5 feet tall. Today me and my mom are opening up the pool. Yikes! It might take us a while, my 73 yr. old mom is a very strong lady though and a great help to me. Hopefully if I survive this grand opening you all can come over and hang out!

 

Truman, I can totally relate to your friend. It's not that I'm shy and I'm sure there's others like me, it's just that I'm apprehensive with new situations and people. But you all sound like a terrific group here and I hope to join in and tell you more about myself. There's actually a couple here that I know.

 

Sadie, thanks for the update! You always bring a smile to my face and I'm glad you're feeling no pain! Yfchoice, I made it here, I still use Razz. I couldn't decide on a name. I thought maybe bluebird, razzcal, starfire, starburst!

 

There's still so much I don't understand about scleroderma. I hope to find out more about understanding this disease and about each of you while I hang out on your block! :lol:

 

Razz


Live well, Laugh often, Love much

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Hi Razz,

 

 

 

Welcome! I'm so very glad you too the plunge and posted. You have a terrific attitude and I know will give so much support to others in addition to having a great support team for yourself now.

 

 

 

I look forward to knowing you better!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Razz:

 

Welcome! I just wanted to let you know that you have come to the right place. There are so many special people here who are always ready to answer questions; give advice; lend support; and be such kind and listening ears. Your upbeat attitude is half the battle and there are days I wish I had that. I have good days and bad days like everyone and sometimes I let this disease get the better of me. The I decide that it's not going to be that way and I fight back but it does get hard. My life is so different than what it used to be but I have decided not to look back and accept it for what it is. This I guess is the new me and I have to learn to live with it.

 

Welcome again and warm hugs,

 

Peggy

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Hi There-

 

Is that you "razzmatazz? If so, Yeah - it's like hearing from a lost friend. I still log in here often. I am comforted by all the shared optimism, strength, and knowledge of the group.

 

How are you these days?

 

I am almost recovered from the skin relapse after the doctor tried to switch me off Cellcept (to methotrexate to help with myositis symptoms) He thought I was in full "remission" from the early diffuse sclero - but no, not yet. I am back on the Cellcept and lucky to be so responsive. It's been a great drug for me.

 

I've just started IVIG specifically for muscle issues, and it is really making a difference.

 

Welcome - it is good to see you! I hope you post your story for all to read.

 

-RTS

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Hi Razz

 

Just wanted to welcome you too! I see you already have loads of friends here!! Glad you decided to join us.


Sending good wishes your way!

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Welcome Razz (I like Razzcal too!)!! Looks like you're fitting right in and I'm sure some of us can learn a thing or two through you.

 

Barfut & Tru...I truly undertstand about the "boys" thing. I love both of them dearly, but they can zap the energy right out of me with all their activities. My oldest is driving now so while it still "scares" me to no end :huh: he is helpful on those many, many weary days.


I may have Scleroderma, but Scleroderma doesn't have me!

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You guys are terrific! Thanks for welcoming me. I think I'm gonna like it here. I hope I do fit in here because I like to laugh and I have a great sense of humor. You have to when you have scleroderma!?

 

Nan, I think having a ramp is a great idea. Going up and down stairs used to be hard on me. Especially because my washer and dryer are downstairs and I have to carry my laundry basket up and down. I have more energy now than before but I still get worn out. When I first developed scleroderma I was tired all the time. Now I'm better but I still push myself. Like today, me and mom got most of my yard ready and the pool cleaned up somewhat. Tomorrow I hear we're having 90 degree weather and I wanted to be ready. I sure am worn out though. I keep saying I'm gonna sell my small house but sometime in the future I will.

 

Thanks for listening to me ramble and keep up the great comaraderie!!

 

Razz

 

RTS--

 

Yes it's me, the new and improved "Razzberry", how do you like the spin on my name? I would like to change it to chocrazzberry, you know like chocolate rasberry. Now I'm hungry! I have to go feed the stomach. Caio!!


Live well, Laugh often, Love much

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Razz.......you made it. And here I thought you had been posting for a long time. This is a very cool place. Everyone here is respectful which is a nice change. Besides, you already have an old group of friends (well, I'm prob the only age old one) here. Now you'll just add some new ones.

 

YFChoice


~ You have to think anyway.....you might as well think big

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Yfchoice,

 

I see the respectfulness here and I love how the posts get screened before they appear on the board. Yeaaaa. Nope, I hadn't been posting. Just snoopin'. Now I'm a poster. I definitely look forward to being here for the long haul and adding some new friends. Yippee! I promise to tell my story but I couldn't hold back from saying howdy.

 

 

Razz

 

P.S. Age is just a number!


Live well, Laugh often, Love much

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Razz, Boy, I haven't been on here for a few days and I just got on here.

I am so happy that You joined us here!!! Soon as I saw Razz in your name I knew it was You!! Sorry that I haven't replyed till now. I had some bad days and Hospice upted my Morphineso I'm doing alot better!

 

Sadie

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Hi Razzberry {one of my most favorite berries :D} ... good to see a new face here! Glad you decided to start posting, because I think we're going to enjoy you too :rolleyes:!

 

Many wonderful folks here...I see you know some of the special ones already!

 

You're off to a good start!

 

Hugs,

 

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Razz ~ I'm rather new also, plus I don't get a lot of opportunities to post ~ so I'm no well known. Sounds like you came to the right place, I've had a wonderful welcome. I'm trying to write my story to explain all that I've been through over the past 8 years or so. I guess I've never been "officially" diagnosed, which is really crazy. But that was then, this is NOW. I have an appointment with the rheumatologist for July 30th and I plan on getting some answers then.

I had a major operation in January (a portion of my stomach removed) due to Watermelon Stomach ~ and I expected that to be the "cure all." Unfortunately, that isn't the way things worked out. I'm back to feeling pretty rotten and I'm really stuggling to keep my head above water.

At any rate, welcome ~

I'm sure you'll be right at home here. For me it's like the port in the storm!

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Great description Nina; it is the port in the storm, the place where you can feel comfortable and safe, if only for a moment.


Tru

 

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

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The welcome here is phenomenal and I can see why people hang around here. I started reading some of the older posts and got lost in a den somewhere. That's where I found out you can log personal stuff, recipes and special hobbies. I'll figure out how this works so bear with me.

 

Before I tell my story (in a new thread) I wanted to shout out to Sadie! Hey Sadie, I missed you and I am thrilled to hear you're in great spirits! You know I am the only Razz. I'm glad you knew it was me!

 

Tru and Nina, this is a nice place to come to after a long day. I agree it is a safe and comforting port! Nina, I hope your rheumatologist gives you the best medical treatment and helps you feel much better. I went through five doctors before I found this last one. I've been with him for 7 years.

 

Debonair Susie, Shelley, and Andyko, I'm also looking forward to getting to know more about you and everyone here.

 

Razz :)


Live well, Laugh often, Love much

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