Posted 30 January 2008 - 10:27 AM
Just wanted to put out a hello and an introduction from a newbie. I'm not sure if this is the right way to do this or not. So, if it's not I'm sorry.
My name is Sarah. I was diagnosed with Scleroderma on August 16, 2001, after many months of trying to figure out why I was so sick. I was living on my own; I didn't have much of an appetite, and had lost about 60-70 lbs in about 4 months.
I am now 30 years old. I live in Ogden, Utah in my parent's home. I'm
currently not working, but help with my grandparents whom also live with my parents.
When I was first diagnosed I had progressed fairly fast. But for the last 4 years I have not had any progression or any problems with my health. That was until March of last year. I started having some trouble breathing and was diagnosed with Pulmonary Fibrosis in August of last year. The irony is that I was diagnosed almost 6 years to the day of when I was diagnosed with Scleroderma.
I'm currently on Cytoxen IV treatments. I've only had one treatment so far. I'm also on oxygen, have a lot of problems with my stomach, and seem to be getting a cold.
I love to play on the Internet, talk with friends around the world, I also
like spending time with my family especially my mom and dad who take such good care of me. I love knit, crochet, and I am a huge movie buff. I have this ability for keeping useless information in my head, especially about all things entertainment. My family calls me either imdb Sarah or moviephone Sarah. I also love spending time with my nieces and nephew in Arizona whenever possible.
I'm looking forward to meeting new friends!
Posted 30 January 2008 - 01:40 PM
I think you will love this forum as everyone is so very kind and helpful. I have been on here so much and have gained so much good information and advice. Everyone is wonderful.
It sounds like you have some wonderful help with your family and in that you are blessed. Good luck and welcome!
Warm hugs from Minnesota.
Posted 30 January 2008 - 01:55 PM
Posted 30 January 2008 - 06:06 PM
I'm new too. I was just diagnosed last month with limited. I haven't had a lot of serious problems and I, too, am still in the research mode. I find the people here very warm and friendly, and very helpful. There is always somebody who can answer a question or understand what you are going through.
It was really nice to read about you; thank you for sharing. It sounds as if you are very close to your family. I have always wanted to learn how to crochet and knit, I need to make the time for that. I'm sorry you are going through so much right now, and I hope things settle down for you.
Posted 31 January 2008 - 03:06 AM
Welcome to the forums! Well, I am not a newbie to scleroderma or this site, actually I was diagnosed about 15 years ago. I too have pulmonary fibrosis and went through IV cyclophosphamide treatments two years ago. It definitely helped the progression in my lungs. It is great that you have a caring family and support system. It is such an important part in fighting this disease.
We are all here to support you and offer any helpful hints that we can.
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
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International Scleroderma Network (ISN)
Posted 31 January 2008 - 04:32 AM
Your intro was perfect... only wish we all didn't have a need to be here, other than to meet one another as "healthier" folks.
This is a wonderful forum and I'm sure you'll find great comfort from this "family"... I know I do!
My trek for diagnoses began in 1991 and results "started" coming in 1995, when I lost 18 # in a month. After 2 weeks, the flu-like symptoms continuing, my internist knew there was a great deal more going on and sent me to one of the best gastros in town. At that time, he diagnosed me withCREST Scleroderma... my hands, face, mouth (microstomia) were clinical indicators, along w/ the problems I wrote of having for so long without a reprieve. I was grateful to at last know it wasn't "in my head", as the doctors prior, had come up with "nothing".
Today, my Sclero has been determined Limited, though I had more skin involvement at the onset, much has since calmed down. I am more fortunate than many who are family here, yet Scleroderma has so many "faces", that you are also fortunate to have been diagnosed as soon as you were, in my mind's eye.
I have no doubt you will have many contributions to make here, due to your experiences with your diagnoses/treatment. There is a wealth of information within this group, as well as on this very site.
Posted 31 January 2008 - 04:59 AM
From what I've just been told recently, symptomatic breathing issues often show up before they register on Ct scans or lung function tests.
Since my last lung function test in April, I've been having a hard time breathing. THe tests I just took last month did not show anything much different than the April tests, but the bronchoscopy lavage thing they did showed a significant amount of inflammation.
So it might be something worth mentioning to a doctor, if you haven't alread.
Posted 31 January 2008 - 10:25 AM
This is why I love this site as you learn more here than you could ever find out on your own and it is so very beneficial!
Warm hugs from Minnesota.
Posted 31 January 2008 - 11:52 AM
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host
International Scleroderma Network (ISN)
Posted 01 February 2008 - 05:57 AM
It is a pleasure to meet you. I am 30 years old as well and I was diagnosed with diffuse sclero a little over two years ago. The progression the first year was horrendous, but things have settled down for now. Good luck with your cytoxen treatments.
dx Jan 2006
Posted 01 February 2008 - 10:00 AM
Posted 02 February 2008 - 09:07 AM
I'm a newbie too; I just found this site a couple of days ago. Have you been crocheting and knitting for very long? I started knitting a while back to calm my nerves and have enjoyed it a lot. If it isn't an overly complicated pattern, it's almost a kind of meditation; you can just put yourself in "the zone" clacking those needles together!
I think educating yourself to every treatment that's available and comparing notes on what works and what doesn't is a giant step in the right direction. It's got to feel incredibly empowering to know all your options before agreeing to a treatment or procedure. You know, we haven't had the opportunity to chat yet, but I hope we do soon.
Good luck with your treatments!
Posted 02 February 2008 - 10:31 AM
Sorry I'm late. Welcome!
I hope the cyclophosphamide works. I'm doing IV cyclophosphamide too. It has made my skin baby soft, but also brought on some boils. Yuck. I took antibiotics to help; they went away but kept coming back. My mom told me to try a salt bath and what do you know they're all gone without the help of antibiotics. Her thought was cyclophosphamide is in my body, but also in my skin. The salt draws out the cyclophosphamide preventing the boils from forming. Now I take baths all the time and its so relaxing. Hopefully this doesn't come up, but just in case I thought I'd share.
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...