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#121 kathyrw

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Posted 12 March 2007 - 07:39 AM

Hi Janey,

Thank you!

Kathy

#122 afii

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Posted 18 March 2007 - 10:09 PM

Hello again!

My name is Linda, and I'm 17. I have a wonderful family that supports me a lot.
I'm in highschool, in 10th grade and I looove english, geography, biology and history. After highschool I want to study medicine - it would be great to have a physiotheapist or orthopaedist career. In free time I try to go to the bellydancing lessons and I like cycling. Also I like computers - I'm a adminstrator in our schools web page so it gives responsibilities and tasks, for example putting there news, articles and so on. usually I'm not even feeling like having scleroderma and in my case it is not so serious (I have morphea). The biggest probem is metothrexates side effects, but I know that I'm not he worst case and try to think positive thoughts.

#123 WestCoast1

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Posted 21 March 2007 - 04:59 AM

afii,
I am sorry to hear that you have morphea and have to deal with negative side effects of the metothrexate.

It sounds like you have alot of wonderful goals, and some fun school activities. I am glad that you found this site. Welcome!
*WestCoast*

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#124 Shelley Ensz

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Posted 26 March 2007 - 09:40 AM

Hello Linda (Afii),

Welcome to Sclero Forums! Somehow I entirely missed your post earlier. I'm glad that you are staying very active and involved, despite morphea and being on methotrexate. I hope the treatment helps. Keep up the great work in school!
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#125 relicmom1

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Posted 22 April 2007 - 02:42 AM

Hey everybody!! My name is Barbara (there seems to be a few of us here :) ) I am 49 years old/young that differs from day to day!! I have a 22 yr old son and 17 yr old daughter , both still live at home. I have two great dogs, an 8 yr old Jack Russell names Rocky and an 1yr old Australian Shepherd named Zoe. I had to "retire" in 2004 due to this disease. I had worked in the medical field for about 25 years as insurance and billing specialist. I have worked in a Cardio, dermatologist and then Gen Practice. I was in general practitioner the longest. As those of you know, someone who works in the medical field makes the WORST patient sometimes :P .Even though I didn't try to go on and become a nurse, I tried to learn as much as I could. The last two doctors I worked for loved to teach, so I did learn an awful lot. I'm a true American southern girl!! I live in central Virginia, USA. I have been married to my high school sweetheart for almost 28 years. We have been together for 35 years!! I was 14 and he was 17 when we met and just knew we were each others soul mate!! I love my family very much and if it weren't for their love and support, I don't know what I'd do. I'm the mom that all of my kids friend consider their "mom#2". I have many other "kids". I was the mom that would take their kids and friends all over the place. We loved to go sight seeing, amusement parks, weekend trips to the beach or mountains. I've been to many, many concerts and been just about the only parent there. Hey, I do like most of the music the kids listen to now :) I do miss that!! My "kids" still come by and check on me or call me to check. I have listened to a many of them when their own parents wouldn't and helped to keep them out of trouble or harming themselves. I've gotten calls in the middle of the night asking for a ride home and yes, I got up and went and got them. I probably angered some parents, but I have a hard time not helping a kid who asks for help. But I've also had parents thank me because they couldn't reach their child and help them and I did. My children are my most prized, valuable things in my life and I would go to the end of the earth and back to protect and help them. I respect them as a human beings and my love is unconditional. There are three things of my that you don't mess with 1.my kids 2.my money and 3.my man and IN THAT ORDER!!!
I spend most of my days on this computer or watching that stupid tv. I can't go like I use to and that has been really hard for me to deal with. I love to cook, but I don't much anymore. I'm a true old time southern cook (learned from my mama). I sell on ebay to try to help supplement our income since I no longer work. I did finally get awarded Social Security disability and my daughter gets it because she's a minor. It took me almost three years and a lawyer to get it, so of course by the time it came through our credit had been ruined, we almost lost our house. My husband has a good job and good benefits(thank goodness!!) He has good health insurance on us..good thing...I take 18 different prescription meds a day, more when I get sick. We are slowly getting back on our feet financially, but it's tough!! He will be eligible to retire in 3 years, he's been with the same company since he was 18, but we don't think he's going to able to because then we will have to pay for health insurance in full and right now we're told it runs about $900.00 a month and we wouldn't be able to aford that if he retires early. That's been tough for him to accept. He's always planned to retire at 55 and now because of me he won't be able to. That makes me sad. But he's never ever said anything bad to me about it being my fault. He's the most wonderful man and I do love him so much even after all of these years :) Ok, this has been waaaay toooo loooong :P If anybody wants to email me, please do!!
Peace :)
Barbara aka relicmom1

#126 Heidi

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Posted 22 April 2007 - 04:14 AM

Hi Barbara,

Thanks so much for posting on this thread and letting us all get to know you better! And, don't ever apologize for it being too long.

Your family sounds wonderful and I am so glad to hear you have so much love and support in your life!

Warm wishes,
Heidi

#127 CraigR

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Posted 27 April 2007 - 11:18 AM

Hi,

I'm Craig, age 52 and live in Escondido (near San Diego), Ca. I work as a financial analyst at a local tourist attraction. I used to be Food Service Director for 20 years, but that was too physically challenging after severe health problems (Burkitt's Lymphoma and stem cell transplant) in 2002.

No kids or wife - but I have two sisters, each with a grown boy and girl. One niece recently made a grandmother of my sister. Other sister lives north in the California wine country, which I love to visit, by way of the Big Sur coast.

Interests are gardening (I have a new custom home built in 1 1/3 acres with about an acre of native plants, as well as fruit trees and roses) and restoration of old pneumatic player pianos. Many years ago I restored player pianos as a business. Still have about ten pianos, in various states of repair. I also love to read, especially since I don't get around as well as I used to.

I live with my best friend Judith; also have a Cardigan Corgi and two cats.

Diagnosed with CREST 30 years ago (actually CRST, since I don't have esophageal involvement) Raynauds was the worst problem until about ten years ago when I developed secondary Sjogren's. Then, in 2002, I came down with Burkitt's Lymphoma, a very aggressive cancer, which I seem to have beat (knock on wood...). However, the cancer treatment left me much weaker and with peripheral neuropathy in my feet.

Craig

#128 janey

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Posted 27 April 2007 - 03:43 PM

Craig,
Welcome to the forum and thanks for telling us somethings about you. Your home sounds absolutely beautiful surrounded by fruit trees and roses. I've never been very good at growing roses so I envy those of you who have that rose green thumb.

You obviously are a real fighter! You've survived quite a bit. Keep up the fight! You're an inspiration for us all.

Hope to see you posting often.

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#129 gordon

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Posted 13 May 2007 - 02:01 AM

Hi There
My name is gordon. im a newbee, in fact did my first post a couple of days ago, I got a very warming and caring responce which was fantastic. All the stories touch a nerve, I myself am still waiting for a biopsy result which has been nearly 4 weeks now. im a very outdoor person enjoying all aspects of outdoor life, I have a 2 year old working springer spaniel to keep entertained, I have been with my partner lyn for nearly 9 years. we have a 7 year old son and my stepdaughter is 15 going on 20. we share our house with 2 persian cats, a barn owl, 3 chickens, a rabbit, guinea pig, 2 ferrets and 2 goldfish. already what I have seen in this forum has been uplifting,hope to speak to you all soon.
kindest regards
gordon

#130 WestCoast1

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Posted 13 May 2007 - 04:15 AM

Thank you Gordon for your post. It sounds as though you have a nice family to support you and a fun little zoo of animals to keep you busy. I am so glad that you found this forum.
*WestCoast*

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#131 Sharonvandee

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Posted 16 May 2007 - 12:27 AM

Hi My name is Sharon I am 33 married with three wonderful children and a great Husband, I currently work in Childcare and am studying to get my Diploma. I was diagnosed with Raynaud and Hughes Sydrome, I suffer from scoliosis and have Gi tract problems and regurgitation of 4 out of 4 valves of the heart, I am asthmatic. That will do enough of the sad stuff now the good stuff I like scrapbooking, reading, cooking and hanging out with my family

I love the warmth and information on this site the support is wonderful Thanks for letting me join this wonderful group
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#132 WestCoast1

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Posted 17 May 2007 - 04:31 AM

Hello Sharon,

Welcome!

We are so glad that you joined us. With a family, working in childcare and getting a degree, you must have your hands full. That takes allot of dedication, you have so much to be proud of!

Thanks for posting a little about you.
*WestCoast*

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#133 Timo

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Posted 30 May 2007 - 01:36 AM

Hi my name is Jess

I am 19yrs old and I live in Australia. I have rheumatoid arthritis, polymyositis, scleroderma and raynauds. I was diagnosed 5 years ago while at high school. I'm really only now finding out the full extent of my illness and what may lie in the future. I was still a child when I was diagnosed so I have had to fight to be treated as an adult as I have grown up. It has been a huge relief to find this site!

I am curently studing at university to become a primary school teacher. I am half way through my second year. I have an amazing boyfriend of two years who is a huge support, and a family that helps me every day.

I love to paint and have recently been asked to place my paintings in a small shop to be sold which is really exciting.

Thanks for listening!!!!

Timo

#134 LoriAnn

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Posted 31 May 2007 - 01:00 AM

Hi Everyone

I am new to your forum, and just came across this discussion.

I have been married for 24 years. I have 2 great teenagers (girls). My oldest has just come home from her 1st year of college. My youngest is going to be a junior in high school. We live in the very cold state of South Dakota. (Not a good place to live with Raynauds) Just kidding we love it here. We moved here from sunny warm CA about 10 years ago. We have a very spoiled German Shepard named Teddi. I work full time in a grocery store.

My hobbies are, running, hiking, reading and now roller blading. My oldest is teaching me how to roller blade.

I am so glad I have found this site. Everyone has been so warm and friendly.
Reading your stories and how everyone is doing has helped me deal with some of my fears. BIG THANK YOU!!!!!
DX: Diffuse systemic Scleroderma 06'
Lori Ann

#135 Sweet

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Posted 31 May 2007 - 08:27 AM

Hi Lori Ann,

It was so nice to read about your family etc. I'm so impressed with how active you still are!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#136 WestCoast1

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Posted 31 May 2007 - 01:14 PM

Hello Jess....and Welcome. That sounds really tough to have had a diagnosis as a teen and not be treated as an adult. I bet you are so releaved to finally be taken seriously.

That definitly is exciting news to be showing/selling some of your pieces in a store. Even though you are going for your teaching degree, I hope that you never put down those paint brushes!
*WestCoast*

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#137 WestCoast1

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Posted 31 May 2007 - 01:20 PM

Hello LoriAnne~
Welcome to the forum. Dispite your illness, it sounds like life is pretty good with so much to love.....hubby, kids and a spoiled puppy!
Thanks for your post!
*WestCoast*

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#138 Margaret

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Posted 31 May 2007 - 02:26 PM

Hi Timo ,

My son, Gareth, is 19 and just diagnosed with sclero last Nov. The doctors have been going back and forth between sine sclero and UCTD.....all the same to me, his Mom. I know he has had a rough year of school and his strenght is gone most days, but he will be *graduating* next Friday with his class. I put that in astericks because he has Down Syndrome and Autism which allows him 2 more years of schooling. He wants to go to a state university (PSU) that offers a program called Lifelinks....where special needs kids can 'go to college.' They can continue their academics and work on job skills while interacting with their normal peers. As sick as what he has been this year, he is still excited about going this fall. Best of luck in your schooling to be a primary school teacher.....the world can always use good teachers!!!

Take care, Everyone.
Margaret

#139 Timo

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Posted 31 May 2007 - 09:31 PM

Wow Margaret, what a lot for you and your son to be dealing with.

I definately know how hard school can be but I believe we are each given only as much as we can handle. That's really great that your son is getting ready to graduate and if you are anything like my mum you must be bursting with pride. Your son sounds a little but like me. Every single obstacle that I came up against only made me more determined to do what I wanted in life and succeed at my goals. Good luck for the graduation, thanks for sharing your story and I hope to get to know you and your son a lot better.

Take care
Timo

#140 Shelley Ensz

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Posted 01 June 2007 - 12:42 AM

Hi Timo and LoriAnn,

It's a great pleasure to have both of you join Sclero Forums, and with such inspiring stories, too. I look forward to hearing more from both of you. Welcome!!
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.