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Getting To Know You - Archives

255 posts in this topic

Hi Karen,

 

You are lucky to live in Michigan -- there is a major scleroderma center at Ann Arbor.

 

If your insurance allows it, it is always great to have a scleroderma expert on your medical team, as the majority of rheumatologists may only encounter one or two cases in their entire career...and then quite often, they hardly know how to diagnose, monitor or manage it, when they do happen to stumble upon one.


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.

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Hi everyone,

I was so excited to get on the computer and see that so many people responded to my post. Here is a little bit about me. I am 35 years old,my husband and I have been married for 16 years(highschool sweethearts :wub: ). We have 3 great boys,who are really active in baseball,football,basketball,& golf.They keep me pretty busy. I was diagnosed with limited systemic sleroderma right after my 29th birthday,my biggest problem is raynaud's withdigital ulcers. It doesn't help that I live in the midwest,it gets pretty cold here. I lived in Va. Beach for 17 years, then we decided to move here to be closer to my family,that's when all of my problems started. I was lucky to have a good doctor and got a quick diagnosis. I love to go on vacations with my family anywhere warm. My husband and I have been to carribean a couple of times but I would really like to take our kids next time. My goal is to go twice a year,once with kids,once without. I really didn't feel the pain and stress of this disease when we go on nice,warm vacations. It's definetly a break from everyday life.Well I didn't realize I had so much to say. Looking forward to meeting new friends.

Diana


Diana

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Hello to everyone, what a great idea Erin. All of you have very interresting stories to tell.

Let's see where do I start. I am 52 years old, live in Wa. State, close to the Canadian Border. We moved here one year ago from Ridgecrest Ca. My husband worked for Dept. Of Defense for 38 years and retired. Well at least he thought he was retiring, until he found out his ex wife gets more of his retirement than expected. Now he works for Home Dept at the Pro. Desk. Needless to say he has been a little down in the dumps for the last 5 months. I haven't been able to work for the last few years, due to many health issues, which I won't get into now. From age 19 to age 38, I think that's right, my memory isn't that great, I was a Dental Assistant/ Receptionist/ Office manager. I have been married 3 times. My first husband was my childhood Sweet Heart, who is the father of my incredible 28 year old daughter, who is going to university, in Toronto Canada, to be a Mechanical Engineer. I am Canadian, I have lived in the US for 15 years. My second husband was a Dentist, who unfortunately decided he would rather be with an older woman, oh well!!! I owned and operated a clothing store in B.C. for a few years, unfortunately I couldn't keep up with the big Department stores. After I closed my store I went to Hawaii for a vacation with a Flight Attendant friend of mine, and that is where I met my super handsome husband, I'm with now. Boy when they say third time lucky, were they ever right. I met him at a singles bar called Studebakers. He was with someone, but I couldn't help myself, I zeroed in on him and when she went to the bathroom I walked over and introduced myself. Now normally I wouldn't have been so forward, but that afternoon I saw, one of those people who can see into the future. I actually still have this on tape. She told me I was going to meet my third husband on that trip. I know it sounds crazy, but that's what happened. I was only there for 10 days and a couple of month's later he came to see me in Vancouver and before I knew what hit, my daughter and I were living in the US. He is the best thing that has happened to me, sure we have our ups and downs, but all in all he's my Dream Boat. Sorry that took so long, as it was, I just covered the basics.

 

Friends Always

 

Jackie S.

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I have read this and never posted on it so I guess its my turn.

I am 43 years old, I live with my boyfriend and my 2 year old grand daughter. I was given a diagnosis of limited sclero and dermatomyositis last spring I think it was. I am not working anymore but my goal is to get things under control so I might go back to work at some point. I hate to think that this has gotten me. I have to get "IT" I am about to adopt my beautiful grand daughter. We got to court in May and then I adopt. By the end of 2007 she should be all mine.

 

OK My health is a funny thing, for a few years we thought I might have Multiple Sclerosis, but on one Dr visit he asked me about my face and the color change and wanted me to go to a dermatologist but I said that the color was due to an old sunburn I had and with that I let it go. I guess he planted the seed that day because one day I looked in mirror and noticed the color was very bad along with the tough skin on my chest I knew something was wrong and it was not MS ( multiple sclerosis) I called the dermatologist and as soon as he saw me he thought I was correct and it was from the sun but he wanted me to come back for a skin biopsy. To be honest I don't even remember what that showed but it was something because that's when the merry go round of sclero started. I was told I needed to see a rhummy. I did and as soon as they looked at me they told me I had dermatomyositis and scleroderma. Boy I was in shock. I only heard of scleroderma one time and that was the movie about Bob Saget's sister and she died! I remember being numb like and coming home and getting on puter fast to look it up. That's how I found this forum (or the MSN one before the move) Besides the color change on my face I also have red hands. I knew looking at my hands something was wrong but I figured it was just eczema and never did anything about it. Around the time I noticed my face I also started to have a bad rash in my back.. it was so itchy I was sleeping with a back scratcher in my bed. I had also had a bump under the skin on my finger. I had x-ray done and was told it as a deposit of something I don't remember at this point. I now assume it was calcium.

 

I also had to have a liver biopsy. It was easy enough and the results were good.. I had a heart cath done about 4 months ago and it showed no PAH but Diastolic dysfunction. Meaning the left side of my heart is getting or already is stiff.

 

I guess that's about all I can think of too say and this is long enough!

 

Hugs,

Patty


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

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Hey everyone & Patty-

 

 

I'm TJ Ilive in Merritt Island, FL , diagnosed 1-4-07, diffuse sclero, lung and kidney involvement. Meds are CellCept, Protonox, and Lyrica. What a great place to divert one's attention too!

 

I'm married to a wonderful, supportive man, have two cats and like everyone here has a story to tell. Unfortunately, I'm one of those people that the more I read the worse I get and I haven't found my way around this forum to check back up on the things I've responded too.

 

Computer geek I'm not.

 

Hope that everyone is doing well!

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Hi TJ,

 

Welcome to Sclero Forums, it is wonderful to have you here.

 

I dare say most of us were initially upset and overwhelmed when we learned about scleroderma and related illnesses. In the beginning, learning about it can be frightening. But, after a spell, we usually begin focusing on the more positive aspects of it -- the terrific examples of people who have somehow happily coped with far more than we will probably ever encounter, the wonderful friendships, and the sense that we can go on with life, even exuberantly.

 

Severe illness puts special demands on all of us, to quickly expand our methods of coping with stress, to build a stronger support network, to learn how to be more flexible. We learn, if we haven't already, that happiness is an attitude that is entirely independent of our circumstances; we can choose to be happy in spite of everything. We don't have to give up living, in fear of dying; if anything, we have even more reason to wring happiness and joy out of every single moment!

 

Some of us need counseling and/or medications to help us over the hump, especially if we have not encountered major situations before that have forced us to develop additional coping techniques. Embrace all the new opportunities to learn and grow through it, and a little while down the road, you'll be able to greet others who are newly diagnosed with your special insights on how to get through the hurdle stage.

 

You can do it, and in fact you already ARE doing it, by joining this support group and sharing how you feel about it all. The people who don't do as well are those who avoid the whole issue in the first place. By avoiding learning about the illness and seeking support, they also do not learn how to take care of themselves properly.


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.

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hi all, my name is kerry, and I just turned 30. my dad was diagnosed with scleroderma (i think localized) about 3 years ago. i like to come here for support and to learn more about his condition. my friends really don't understand, so it's hard to talk to them about it. i myself work in the pool/spa/stove industry in WA. single with no kids, less drama that way lol. so I spoil my nephews instead and babysit them when I need a kid-fix :) you may not see many posts from me since I myself don't have scleroderma, but I do read the threads here. i feel for all of you, as I see my dad suffer. i hope someday sooner than later they can find a cure, so everybody can get back to normal, or close to it. be well everyone.

 

kerry B)

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Hi everyone! I'm new to the board, as I am newly diagnosed (or tentatively diagnosed) with diffuse scleroderma (I'm SCL 70 positive but have very few symptoms). I am an Assistant Professor of Psychology at a community college in Northern Illinois. I've been married for 13 1/2 years to my college sweetheart, and we have a beautiful 3 1/2 year old girl named Kirsten. She is the light of my life.

 

ErinF

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Erin, Kerry, TJ, Jackie, Diana, Karen, and all the new members (sorry if I've missed some),

WELCOME! We are all very glad that you have surfed the net and found us here at ISN. It's a great group - lots of experience and endless support for those with scleroderma and for the families of those with scleroderma. You are all welcome here!

 

Thank you for telling us a little about yourselves. It's a great way to start to know you. I hope to learn more about you in future postings. Please join in anytime. See you all soon.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Wow - page 5 eh?

Well if anyone is still reading this mammoth thread I'm soon to be 35 years old and I live in a beach side town of about 5000 people called Whangamata in New Zealand.

I have diffuse Sclero diagnosed 2 years ago. I have limited lung involvement but huge skin involvement and my hands are curled and ulcerated. Eight months ago I finished 6 months of Cyclophosphamide infusions.

I no longer work and spend my days stretching, walking the beach, trying to eat well and visiting friends in nearby towns. Although I used to paint I find it hard to hold the paintbrush now so I have adapted my creativity somewhat and now incorporate sand and shells to my canvasses.

It would be my two greatest wishes to regain some hand function and also to fall pregnant, although if I could fall pregnant I have reservations on whether I could cope!

I have never met anyone with Sclero so I am hugely grateful for this site.

Take care, Megan


Kiwi

 

Diagnosed 2006 - Diffuse Scleroderma

Skin and lung involvement

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Hi Megan,

 

We certainly are still reading this thread...it is our most popular thread, by a long shot! I hope other members take the hint to introduce themselves to us here, too. It is a great way for us to all get to know each other.

 

I love the way you have adapted your creativity. Do you live anywhere near Sherrill Knaggs?


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.

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Hi Shelley

No, I think Sheryll lives about 3 hours away. But I am delighted to hopefully be meeting someone with Sclero next week. She is coming to town, has similar hand and arm function as me (very little !) and is training to be a fitness instructor of all things! I have NO IDEA how she could be doing this but I'm intrigued none the less. Apparently she has been trying a new treatment and she's feeling a lot better so I'll be finding out what that is!

Take care, Megan


Kiwi

 

Diagnosed 2006 - Diffuse Scleroderma

Skin and lung involvement

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Hi everyone.

 

It is really wonderful to get to learn about all of you! I am 46 and have been married for 21 years and have two teenagers. My husband took me to the university health services when we were both in college because another of our dearest friends said my hands (with Raynauds) looked like a corpse's! I was diagnosed pretty quickly at MGH in Boston.

 

I haven't had too many problems until lately and always loved skiing and even rock climbing. Two years ago, I developed some really problematic ulcers on one finger and have had to curtail some of these activities. Still, I'm keeping at it all and have had some improvement with Cozaar.

 

It is quite a relief to get to learn about others with similar experiences. I wish all of you the very best in your health and all other things as well.

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Kathy,

Welcome to the forum! Your story is so familiar. Sorry that your suffering from ulcers. Hope the Cozaar works to not only relieve them, but eliminate them..

 

Look forward to learning more about you in future post.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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