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WestCoast1

Getting To Know You - Archives

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I watercolor doodles of animals, mainly kitties. I make prints of them and sell them as cards which is kind of fun.


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Peanut,

Very cute kitty! I love the idea of making cards and selling them. I usually paint flowers and put them on cards for the holidays, but that idea is very inspiring.

 

and Jefa, sounds like you might have a good set up with the computer table! I use a very high dinner table where I can just stand and paint, sitting too long means I might never get back up.... :)


*WestCoast*

 

********

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Hi Everyone:

 

It is nice to read all of your stories, and know that there is somewhere to come where your information is not new or unheard of.

I am a 37 yr old female, my husband (38 yr old) was diagnosed 1 month ago (definately by a specialist, but in July/06 by an internist). We have 2 boys 12 and 5.

I have been reading all I can regarding this rare disease, and all I can consistently say is that nothing seems to be similar between patients.

Its hard to find information re: males as the ratio seems to be 4:1 female.

He has been diagnosed with Diffuse Systemic Sclerosis Scleroderma.

Skin thickening is present almost everywhere. His hands, arms beyond elbows, face, chest, abdomen, and legs have thickening, tightening, and severe itchyiness.

Raynauds commenced significantly in the summer, but it may have been present 2 winters ago.

Cannot make a fist, or fully extend fingers, tendon rubs are present too.

Slight esophogeal involvement.

PFT was normal and Echo came back - "normal apart from mild aeortic sclerosis."

He has stopped reading about this disease, as it affects his mental attitude and doesn't seem healthy, so....Im the researcher (for better or worse). I do have quite an interest in the medical field, so my inquiring mind helps (hopefully doesn't hinder) too.

Our first experience with Scleroderma, a good friend of my husbands was diagnosed 20 years ago, while we were in high school together, and unfortunately he passed away 3 years ago at the young age of 35 due to SD complications. Im sure you can imagine what has been going through our heads since receiving a confirmed diagnosis. My husbands specialist, (she was our friends specialist too) has told us that she is 99% sure that my husband will not travel the same road. This has been of some comfort to us.

I keep a journal of questions and notes of changes.

Im sure I am like most people, wondering if one thing in this disease, links to another, and so on.

A few questions that come to mind that are not easily answered frrom any information I have read are:

Could it be genetic? Re: 2 boys 12 and 5

How do two good friends (hanging out together in public school) contract the same rare disease?

Does this disease present differently, progress faster, etc. in males?

Would love to hear any information anyone would like to contribute. Just hoping to make contact with those in the same boat!


Oddone - Spouse - 38 yr old Husband diagnosed October 2006, Diffuse Systemic Scleroderma

Normal PFT(July 06), ECG(Nov/06)

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Hi,

It is great to have you posting and introducing yourself and your husband to us! I am just sorry it has to be under these circumstances. You asked some great questions and there are no hard and fast answers. However, I did a bit of research on our Sclero A to Z website and came up with a few articles that may be of interest to you.

This first link takes you to a page discussing different theories of the cause of scleroderma: http://www.sclero.org/scleroderma/causes/a-to-z.html

I hope you find this information helpful.

Warm wishes,
Heidi

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Scleroderma may be caused by chemicals or drugs, like vinyl chloride and silica. Perhaps your husband and his best friend were exposed to the same things…

 

Although I'm female I totally relate - I was just diagnosed and at first I felt I should read everything possible about this disease. Then, my mental attitude turned bad. I was quite emotional; it's a lot to deal with at once. What helped me are antidepressants. Not to say its the answer for everyone but because of them I have been able educate myself with some peace of mind.

 

I hope you find the answers your looking for. There are lots of great people here to help.

 

Best of Luck


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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WOW - I haven't visited this thread in a while and I can't believe all the new members. Welcome to Everyone - old and new. What very interesting stories!

Oddone - you ask about genetics and scleroderma. Heidi has provided you some great links from this site (ISN). I'm highlighting another link from ISN that might provide a little more direct information. This is from the Scleroderma Association of NSW..

"Scleroderma appears to affect people of any race and ethnic background, and in any part of the world. It is an uncommon disorder, and affects approximately 1-2 people in every 10,000. Scleroderma is not directly inherited but there is evidence to indicate that in very rare circumstances some families may have certain genetic tendencies towards the disease. "

Please keep us up on how your husband is doing. He's a lucky man to have you as his caregiver.

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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Hi everyone,

It's so nice to get to know you!

 

Erin and Peanut

I am also a graphic designer and art is my passion in life! I finished college at the end of last summer and am now only getting around to setting up a graphic/web design business so that I can work from home. As a single parent, I found it hard to manage my son and his needs, housework, full time college and around 56 assignments with deadlines while suffering with the dreadful cold here. I got through it and did really well but my poor house suffered, haha.. In art, I love doing faces with different media and try to portray emotions from my art. My final piece for a college exhibition was about how I feel in winter, I called it 'Surpressed'. I was surprissed when it sold because it was so emotional.

 

I live in Glendalough, Ireland and enjoy walking through the peaceful forests and sitting by the lake drawing, painting, writting and reading on hot days. My son Leo normally cycles rings around me while I walk and we have great fun playing frisby and tennis etc. when we get to our destination. I love the sun, my friends call me 'The Oracle' and say that im like a sun dial, I always get them to move when the shade comes near us.

 

I try to be positive about life and live in the 'now', but I do get sad sometimes. Its very cold now and a long way untill the climate starts to heat up. Sometimes I wish I could hibernate, but I am going to use this winter to build my business and express more art.

I think that the majority of you that have partners are very lucky to have the support!

 

HazelTree

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Hi HazelTree,

 

It is so good to learn more about you. I as wondering if your avatar is your own artwork. It is really good!

 

Warm wishes,

Heidi

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Hi Heidi,

 

Thanks for the welcome. We live in Omaha, NE.

 

You are so right, it is hard knowing we traded one disease for another one. It's also hard because from what I'm told even though my husband does have scleroderma since it is secondary it is a some what of a different form and I'm not quite sure what that means exactly. We just went to a pulmonologist today to evaluate his new lung problem going on. He also has pericarditis right now and we found out today that the pericardial effusion has doubled in size from last week. They'll repeat his echo this week and decide what they'll do - either drain it or watch it. We still aren't even sure what has caused the pericarditis as well as the pleual effusion he also has. It's difficult to know who to seek out for answers since all of this is caused from his transplant. It seems like the medical field is surprised at even his existence therefore they act as if we should just be thankful that he is alive. Although we are of course extremely grateful for that he deserves a level of quality of life. I'm hopeful that this week will bring some answers.

 

TeeCee

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Hi again,

 

Wow! You two really do have a lot on your plates right now! It sounds like things are pretty scary and frustrating...especially not really sure who to be asking what questions of since it seems like the transplant started things off.

 

Is your husband seeing a scleroderma specialist? Even though it was brought on by the transplant, and therefore, somewhat different then other forms, I am wondering if a specialist might have more answers for you.

 

Please do keep us posted on what you learn...and know that we are all here for you to provide encouragement and support (and when we can, advice and information).

 

Warm wishes,

Heidi

 

P. S. I live in Lincoln

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Hi Heidi,

 

My avatar is actually a photo I took of myself after drawing leaves and designs on my face with an eye pencil (I know, its a strange think to do, haha..), I changed the colouring in photoshop! I uploaded some of my art to the Photo Gallery if you want to have a browse! Some of the names got mixed up when they were uploaded but I will correct it soon.

 

HazelTree

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WOW This is great, getting to know everyone. I only recently found this site and have found it terrific. My husband has scleroderma, with lung involvement. My husband won't even look at the website ( it depresses him to see the problems)(then agian everything these days make him sour) but I have found it very helpful and informative. We own a small retail store. Lately he hasn't been able to work much. Thinking about selling it. Hats off to all that suffer with this awful disease and their spouse's.

Birdmans Wife


Hugs for All,

 

Julie (Bird Lady)

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Hi Heidi,

 

So we're neighbors! Yes, my husband has seen a scleroderma specialist about a year ago. I didn't care for him at all - he was very arrogant and talked down to us and didn't really provide much help. I was very disappointed to say the least, especially since I was so excited to find someone in town who was well known for his work with scleroderma and in transplant patients as well. My husband's oncologist has done very well with his treatment up to this point and he has always brought in other specialist as problems arise. Is there a specialist there in Lincoln you see or do you know of one Omaha by chance?

 

TeeCee

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Hazeltree, your uploaded artwork is amazing. Thanks. I also think your avatar idea was quite original and very striking.

 

Peanut, I love your kitty, too. I smile every time I see it.


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 Teecee,

I don't know of any specialists in Nebraska (that is why I asked you). The rheumatologist I see here in Lincoln was trained at Mayo and I believe he is very competent and I have come to appreciate him very much. After coming here and reading all the different posts, I realized that he was providing me the best treatment. However, if mine progressed and became a lot more severe, I probably would seek an expert opinion from a Scleroderma Specialist at one of the centers known for their research and work in Scleroderma. I don't know if you have considered that route or not, but here is a link to finding a Scleroderma specialist Scleroderma Expertsl

Please do keep us posted on how you and your husband are doing!

Warm wishes,
Heidi

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I'd just like to remind all of our new members that this is a great thread to post your first message in. Just tell us a little (or a lot) about yourself, just to break the ice and get your feet wet with posting in the forum.

 

I remember being so scared to post my first message in a forum. I worried about whether I would be able to do it right, how it would work, whether anyone would ever reply to my message, etc. I can't exactly say my first message was met with thunderous applause, actually probably none of them ever have been, but the world did keep revolving on its axis and eventually I got used to it.

 

So just jump in and try it out. Our support specialists will make sure your message fits all our Forum Guidelines, if you haven't studied them extensively yet.

 

My name is Shelley. I live in Minnesota. We celebrated Thanksgiving on Thursday and I made turkey stock for soups yesterday. I love to do artwork and crafts and sewing.

 

What's your name? Where are you from? What do you like to do? Why did you join the forum? It doesn't much matter what you say...the important part of your first message is just getting it over with. :blink:


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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Hello,

 

I am Denelle and I am from Minnesota also. I was diagnosed with Diffuse in February of this year. I thought I knew what to expect, but then something happens and I am off kilter. ;) I have been trying to find a doctor that I respect and that I feel respects me... and it has been a challenge. I work at the University of Minnesota, Fairview hospital in the lab. I have also been accepted to nursing school, but have deferred for a year. I live by myself with 2 cats - Otis and Callie. I have learned to lean on my friends for support. I often feel others ignorance regarding the severity of this disease...

 

It's nice to meet you all,

Denelle

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Hi Denelle,

 

Welcome to the Forums! I am glad you found us here, but sorry it is because of your diagnosis of sclerderma. I do hope you can find a good rheumatologist soon. I hope you will come here and post often. I am sure you will find everyone here very encouraging and supportive....and willing and able to provide you with information and advice when we can.

 

 

Again welcome,

Heidi

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Hi Denelle,

 

I'm delighted to meet you! I'm also in the Twin Cities, and my husband Gene is on the lung transplant list through Fairview University. They have a wonderful transplant center.


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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Wow, how did I miss this thread? I'm here all the time! What a great idea. It's so good to hear that we have lives outside scleroderma. I truly cherish this message board, since I've never met anyone with diffuse in person. I'm sure many of you are in a similar situation.

 

I was diagnosed a year ago at 43. In fact, I diagnosed myself since my doctor was sure I had a rash and was just reading too much when I told her what I suspected I had. Then I found a great rheumatologist, who has been wonderful to me through thick and thin (no pun intended.)

 

I'm lucky enough to live outside Philly, where I was born, home of Rocky and cheesesteaks. For over 20 years I've been in the dental field as an office administrator and insurance specialist. Since I've been on disability, I've been doing some consulting here and there, and temporary work, which works out great for me.

 

I've been divorced for 10 years and have two sons, a 22 year old (in his 5th year studying architecture) and a 16 year old (a junior in high school who drives me insane.) We have two cats, Caesar and Cleopatra, and a crazy lovebird named Duncan. She bites! Hard! Lovebirds are the biggest misnomer in the animal kingdom, so now you know the truth.

 

For several years I owned my own paint your own pottery studio, where I taught ceramic classes. I still paint ceramics and do other crafts when my hands let me. I have a big, loud, crazy family, who are always there for me and for whom I am forever grateful.

 

My favorite quote is 'Life is a banquet !' which pretty much sums up my philosophy.... thanks to you all for posting, glad to know you! Love, Mary in Philly


Diffuse sclero; diabetes; hypertension; GERD with Barrett's

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Hi Mary in Philly,

 

What a delightful introduction! It sounds like you have a wonderful and rambunctious household, what with the cats and birds and crafts -- plenty to keep you happily distracted and involved in life!


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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Hello everyone!

 

I live in Washington State, with my husband of 28 years. We have 4 sons ranging in age from 27 to 17, and we are soon to become grandparents for the first time.

 

I just was approved for disability in October, and before that was an administrative assistant. Now I stay home and be a mom as well as enjoying my hobbies, which are reading, crafts and painting. I love country music, and decorating shows on tv.

 

Some of you might remember me from a few years ago, when I was much more involved in the board, and I remember a lot of you too... I went through a difficult year caring for my terminally ill m-i-l, who passed away at the end of this summer. Now, I am back and more in the mood to share and be involved again in the board and all of you.

 

I have Limited Systemic Scleroderma, and Pulmonary Arterial Hypertension. I was on Flolan for almost 4 years and tried Tracleer without success. I have recently switched to IV Remodulin which is working very well.

 

Hope to get to know all of you better. LizzyC

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Lizzy, I'm very sorry for all you have gone through the past few years, but it is absolutely delightful to see you back again!

 

For those of you too new to know, Lizzy used to volunteer as an ISN Senior Support Specialist, and she helped out in some administrative areas as well.


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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