I'm new here too...
Posted 23 June 2008 - 06:35 PM
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!
Posted 23 June 2008 - 09:31 PM
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host
International Scleroderma Network (ISN)
Posted 23 June 2008 - 10:44 PM
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
Patience is something I am still working on. I've got time...
Posted 24 June 2008 - 12:01 AM
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 .
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 .
It is what it is...........
Posted 24 June 2008 - 12:05 AM
Welcome to the forum, you will be lots of wonderful and warm hearted people here!
Posted 24 June 2008 - 01:45 AM
I totally relate to the laid back attitude! I notice that I drive more peacefully now too, besides not cleaning a whole lot. 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.
Posted 24 June 2008 - 01:54 AM
I never was a clean freak, but now I just have an excuse
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.
Posted 24 June 2008 - 02:41 AM
Posted 24 June 2008 - 03:01 AM
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.
It is what it is...........
Posted 24 June 2008 - 04:04 AM
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.
Posted 24 June 2008 - 04:23 AM
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!
Posted 24 June 2008 - 04:35 AM
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!
Posted 24 June 2008 - 06:35 AM
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,
Posted 24 June 2008 - 10:27 AM
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.
Posted 24 June 2008 - 11:15 AM
Just wanted to welcome you too! I see you already have loads of friends here!! Glad you decided to join us.
Posted 24 June 2008 - 01:09 PM
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 he is helpful on those many, many weary days.
Posted 24 June 2008 - 01:27 PM
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!!
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!!
Posted 24 June 2008 - 01:31 PM
Posted 24 June 2008 - 02:01 PM
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.
P.S. Age is just a number!
Posted 25 June 2008 - 10:24 AM
I just want to jump in and say Hi and welcome to Sclero Forums! We're very glad you joined us.
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.