• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
WestCoast1

Getting To Know You - Archives

255 posts in this topic

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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*

 

********

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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*

 

********

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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*

 

********

Share this post


Link to post
Share on other sites

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*

 

********

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

Welll errmm..

 

I'm a 17 - year - old finnish upper secondary student and I've had linear scleroderma for more than 7 years. It only affects my skin and fatty tissue at the moment, but I'm really worried about it prgressing to the muscle or getting on to new ares of the skin.

 

Dancing is my passion, I also like to ride, run, got o gym, swim and stuff. My other interests are computers, friends etc.

 

Everyone else is telling about their children and marriadge which I'm not able to do right now, but I just wanted to say something :) I'm worried and I have a lot of questions and somehow I'm going trough a really hard period with this illness right now, mentally I mean. I just feel like wanting to talk or to SEE someone who would undrestand me, even that my scleroderma is not the worst of the world. (Born under the lucky stars, hah.)

 

Didididididii, my summer holiday just started yesterday ;D Nice.

 

Well, I'd like some people to e - mail me if you have ANYTHING to say, I'd like to hear and talk about things :)) C ya

 

Emmi

Share this post


Link to post
Share on other sites

Welcome to the forums, Emmie. :)

 

No, you haven't yet married or had children, but you are alive and wondering about what is going to happen in your life. There are other young people in the forum - kobi has posted elsewhere that he is afraid of what is happening and would like to have some perspective of others his own age. Louise and Gareth are other young ones and I believe there are others, though my mind is blank at the moment. Dancing is your passion? Good thing, as exercise, stretching, keeping your mind and body challenged and active are all important ways to keep the disease from getting the upper hand.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

I am 45 years old. I live near Denver, Colorado. I have been married to my awesome wife for 17 years. We have an 11 year old daughter who we adopted at 3 years old. She is doing really great now. We have two black labrador retrievers. One is a rescue dog. He was all skin and bones and scabs all over and had been at the shelter for 2 months and was just about to be put down. Got him from a rescue organization. He is just an awsome dog and is finally all fattened up. I work for a large defense contractor and have been employed there for 24 years. I am a Sr. Computer Systems Analyst. The job is high stress but I love it.

 

I was pretty athletic until about a year ago. I have Systemic Scleroderma with Kidney involvement. My hands, arms, calves are affected. My gastro is also affected. I seem to have reached a plateau and have actually seen a reversal, a softening in my arms and hope it continues. I found that a distant cousin on my mom's side also had Scleroderma so I think it is related to genetics.

 

Joe

Share this post


Link to post
Share on other sites

Glad to see all of you posting here (Barbara, Craig, Gordon, Sharon, Jess, Emmie, LoriAnn and Joe just on this page). It is so nice to be able to find out a little more about each of your lives. I encourage you to read through from the beginning and get to know the rest of us. Hugs to all and..


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Wihii I just came to tell you how glad I am for having summer in Finland right now! It's nice when it's warmer and sunny, oh I love this! I just hope my boyfriend will come back from sailing competition from Germany and bring me some courage to go to doctor to talk about Raynauds and to get me some answers for my questions. I'm also a bit afraid my scleroderma has started to progress again. But if my boyfriend is here it won't matter what the doctors will say.

 

Have a nice day you all,

Emmi

Share this post


Link to post
Share on other sites

I havent really posted much about myself so I thought I would here. Im a 34 year old female with two boys ages 16 and 12. I have been married to the father of my children for 15 years and he is wonderful. I am 3 classes away from having a Bachelors degree in Social Services Management. I have been accepted into a Masters program for Counseling. It will start this fall and with my symptoms, Im not sure I will be able to do this. My symptoms started the past Nov with swelling and pain in my index finger hand knuckle. A few months later the skin broke on this knuckle and I have been dealing with trying to get this to heal. It will seem almost healed and then will act up again. I have a history of fibromyalgia and endometeiosis. I have controlled the endo with birth control pills and the fibro is mild most of the time. I am very fearful of doctors and have put off tests, but I have appts coming up.

Share this post


Link to post
Share on other sites

Hi, I'm yet another Barbara :lol: I'm 45, retired social worker and teacher. I train my dogs and do craft stuff otherwise. My fiancé is wonderful and extremely understanding. Currently, I have a definite diagnosis of restrictive lung disease, fibro, and elevated levels of enzymes that are being checked out. My pulmonologist is about to "duke it out" with my rheumatologist about the sclero diagnosis (I don't have any ANA, and no obvious skin calcinosis). Typical for me - ::sigh:: Stealth disease :(

I am engaged, mother of 3+ (I seem to have inherited all their friends as well - they call me Mamashine) 2 in U of Texas Austin, one graduated and getting ready to go to grad school. I feel like I've been sat on by an elephant with this - so thanks in advance for any advice.

Share this post


Link to post
Share on other sites

Rachelle, so nice to hear more about you. Your masters program sounds very interesting. I hope you will feel well enough to handle it. Take good care of yourself in the meantime.

 

 

 

Lasarina, welcome to the ISN Sclero Forums. I can see from your first post that you have two of the most important things you need to fight this illness - a very supportive family and a sense of humor! I hope you will soon find time to get stuck into the other topics as your sense of humor will be welcome. This is a great place for information and support from your peers.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

hi I am Gaurav form punjab,India I am also suffering from systemic sclerosis.i love to watch comedy movies specially rowan atkinson,jim carry,read n write poetry,well I love to donate my self for the experiments done to find right medication and cure for systemic sclerosis,

 

i love to make people happy and this is my only aim of life

 

Rgds

Gaurav :)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now