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#41 WestCoast1

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Posted 13 November 2006 - 03:52 PM

Hi Sherion,
so glad you posted! Well you may not think you have an interesting job...but a grandma to that many boys sounds very interesting (and fun)!

thanks,
*WestCoast*

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#42 Patty

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Posted 14 November 2006 - 02:02 PM

I am a 43 year old grandmother of 4 kids and grands. I am about to adopt my 2 year old grand daughter.
I just got my diagnosis about 5 months ago and it came as a shock. The only time I had ever heard of this was in a movie about Bob Sagets sister and the outcome for her was not good. I was frightened to death so I ame home and found you all.
I can not work any longer and my Dr suggested to me tha I apply for SS. I see how so many of you can ski and do water sports and I can't do anything now. I am using a cane because I have severe hip pain. I have faith that once I get on the right meds my health will improve and I will be back to my old self. I love to hear how so many are doing very well!

I live with my boyfriend of 10 years. (3 of my kids are his and 3 of my grands are his but in my heart they are all mine!) I have one cat that is a big furball baby boy!
At the moment I have my sister and 3 of her children staying with me along with a dog so I have a full house!

I used to work in a meat room as a meat wrapper. I was the one that put plastic wrap on the meat!
I live in the north east and even though its Nov. its been very warm. ( 59 today!)
I am not looking forward to the winter but I guess if I want spring to get here I need winter to arrive so bring it on to get it over with I guess!

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.

#43 Piper

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Posted 14 November 2006 - 03:30 PM

Hi All, I've been a member for a few years and I still don't have a definite diagnosis but I continue to have new symptoms all the time. I was a stay at home mom and girl guide leader for years and loved it. When it was time to resume my career, I was too ill. I have 2 children, now both in college and I care for my mother who is legally blind. Not having a diagnosis other than fibro has been rough. Now it looks like my illness could be called UCTD. I don't know where it will go from here but I mostly have symptoms of scleroderma. Thank goodness I had a G.P who believed there was something wrong with me.
Take care,
Hugs, Piper

#44 Shelley Ensz

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Posted 15 November 2006 - 01:21 PM

Welcome, Patty and Piper! We are thrilled that you joined us, and introduced yourselves.
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.

#45 peanut

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Posted 16 November 2006 - 06:33 AM

Wow. It's so good to read everyone's posts. I was recently diagnosed in August 2006 and I was unsure how it would effect my life, my career and longevity, but after reading all your stories I am so encouraged. A little about me: I'm 27 and in the last year I moved to Arizona, got married (on the beach in Maui), started a new job (I'm a graphic designer), my husband opened a restaurant, I was diagnosed with Interstitial Lung Disease caused by Systemic Scleroderma and started Cytoxan treatment. So it's been quite a year.

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#46 Heidi

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Posted 16 November 2006 - 08:14 AM

Hi Peanut,

It is so good to have you join us and share a bit about yourself! What a year! As I am sure you know, stress exacerbates this disease and it sounds like you had quite a year of stresses. I hope things calm down for you and the Cytoxan works for you.

Warm wishes,
Heidi

#47 peanut

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Posted 16 November 2006 - 08:30 AM

Actually I didn't know that. Having been diagnosed 2.5 months ago, I'm just now learning what's involved in having this diesase. I've been trying to incorporate lots of yoga, pilates and rest into my day. I also like to water color which is also calming. If you have any other tips you might want to share please let me know...

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#48 WestCoast1

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Posted 16 November 2006 - 03:53 PM

hi peanut,
sounds like we have something in common. I am also a graphic designer, and my hobbie is watercolor painting. I am sorry to hear that you have ILD. I dont have any lung involvment but if you have any other symptoms or questions please feel free to ask.
*WestCoast*

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#49 jefa

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Posted 16 November 2006 - 08:43 PM

Hi Peanut and Erin,

I just started playing with watercolour painting this summer when my husband gave me some paints and watercolour pencils for my birthday. I used to paint in oils many years ago and I can draw, but this is all new. I am finding it hardest to get an arrangement where I can work with the paper and brushes and still sit comfortably. I'm thinking about modifying a portable computer cart as a painting table.

#50 Heidi

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Posted 17 November 2006 - 05:40 AM

Hi Jefa,

I like your new Avatar! Is this one of your watercolors....very nice!

Warm wishes,
Heidi

#51 jefa

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Posted 17 November 2006 - 06:27 AM

thanks, Heidi. No, this is me fooling around with my computer's paint program.

#52 peanut

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Posted 17 November 2006 - 08:36 AM

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...

#53 WestCoast1

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Posted 17 November 2006 - 01:23 PM

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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#54 oddone

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Posted 20 November 2006 - 09:38 AM

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)

#55 Heidi

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Posted 20 November 2006 - 10:36 AM

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.or...ses/a-to-z.html

I hope you find this information helpful.

Warm wishes,
Heidi



#56 peanut

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Posted 20 November 2006 - 10:43 AM

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...

#57 janey

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Posted 20 November 2006 - 11:15 AM

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)

#58 HazelTree

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Posted 20 November 2006 - 12:03 PM

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

#59 Heidi

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Posted 20 November 2006 - 03:26 PM

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

#60 teeceekg

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Posted 20 November 2006 - 07:02 PM

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