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Biomarker for Diffuse Scleroderma skin has been discovered!


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#21 barefut

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Posted 05 November 2006 - 05:43 PM

I don't usually correct people but I've seen a few people type "b-a-r-f-u-t" and since that brings to mind something kinda gross :( , I'll have to kindly ask that y'all don't forget the "E" please ;) :lol:

Thanks
Barefut (as in Bare feet :rolleyes: )
Love you guys :)

#22 WestCoast1

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Posted 05 November 2006 - 06:34 PM

oops your right Barefut....sorry about the typo!
*WestCoast*

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#23 adensmore

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Posted 06 November 2006 - 09:00 AM

Hi my name is April. I'm 43 years old and live in Raleigh NC. I'm a commercial real estate paralegal who has worked for the same law firm for the past 19 1/2 years. I am married to my best friend, Kevin, and have 2 wonderful step-children, Taylor(14) and Will(9). We also have 4 dogs, 4 birds, and a cat. Needless to say, my life is a little hectic. 3 of our 4 dogs are Golden Retriever's, and they are a source of endless laughter and entertainment.

I was diagnosed with Diffuse Systemic Scleroderma about a year and a half ago. My original rheumatologist thought I had Rheumatoid Arthritis, and treated me for 2 years will little or no results. Once my skin began to harden, it was clear that I didn't have RA, and I am fortunate enough to live 35 minutes from Duke University. I see a wonderful specialist, Dr. Shanahan at Duke. In addition to being a great doctor, he is a very kind man. I recently began chemotherapy (Cytoxan) treatments at Duke. Having chemo is a very surreal experience, and it is my greatest dream that at the end of the treatments that I will see some improvement. Through all the curve balls that Scleroderma has thrown me, I continue to work full time. I think it helps keep my mind active and gives me a sense of purpose to keep me going.

I'm glad to be here with other people who struggle daily with this disease, and love reading the topics and experience that other's have had.

Warmly,
April

#24 Guest_Jennifer_*

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Posted 06 November 2006 - 09:16 AM

I'm Jennifer. I am 39, single and have no children. I have two adorable puppies that could easily be just as much work! I recently moved back to my home town of Fayetteville, AR after a 16 year stay in Colorado. I spend my free time relaxing, exercising, playing with my dogs, doing a wee bit of volunteering and hanging out with my friends and family. If I had it my way, I'd take a beach trip every month.

I have systemic sine scleroderma. I've had symptoms for about ten years but was not diagnosed until 3/2005. My biggest issue with scleroderma is having interstital lung disease and being on oxygen 24/7....kinda puts a damper on things but I make the best of it and still lead a fairly normal lifestyle.

I am glad to have this thread...It's nice to read about everyone.
Jennifer

#25 fragiledancer2

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Posted 06 November 2006 - 01:32 PM

Hey- I'm a 51 year old psychoanalyst and live with my husband of 29 years. Our two kids are in college and I work part-time. If you can believe I used be a ballet dancer- can't do that anymore! Anyway, I was diagnosed with diffuse 6 years ago, but am doing pretty well. It's great reading about all of you. Shirl.

#26 Sarahp

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Posted 06 November 2006 - 02:03 PM

Hi everyone

I am a retired librarian. I live in Northern Indiana and am 54 years old. I have been married to the same man for 32 years. We have two girls.

I am on several online forums. I love it. I have learned so much. I was diagnosed with Lupus and Raynaud's 25 years ago. I have always been told I fit the CREST pattern also. About 4 years ago I was given the limited Systemic Scleroderma diagnosis as well as APS.

It is very nice to learn more about each of you. I will try to get a picture up soon.

Sarah

#27 luvbnmom3

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Posted 07 November 2006 - 07:37 AM

I just read through everyone's post in this thread....I see mine was mostly about why I'm here as opposed to who I am....lol. I mentioned kids husband already, I have 2 cats & 1 dog & 1 fish. I'm a student, studying to become an RN, hopefully in Pediatrics. I spend much of my freetime studying or researching about this stuff & right now I'm doing some research for a friend who's 3yr. old was diagnosed a week ago with CML (Leukemia). I'd say researching or studying is my favorite past time. I LOVE LOVE LOVE going back to school (I'm 32), but it is going to be a LONG time to finish since there is a 5 year waiting list to get into the nursing program here.

It was fun to read everyone's posts in here....see who we all are outside of this autoimmune stuff.

#28 Lauriejill

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Posted 08 November 2006 - 03:48 PM

Loved reading everyone's stories ....so I thought I would add something too. I am 58 years old and am in my second semester of nursing school .....yes, I am crazy.......its hard work but I really do love it! Of course I am the oldest student in my class....older than most of the instructors too. My intention is to become a Hospice Nurse.
I was diagnosed with Scleroderma a month after I started Nursing school in January. I have been taking pre-requisite classes for over two years and have been on a LONG waiting list. It was not the nicest surprise to find out that I was sick when I had finally started!
I was initally diagnosed with CREST (without the C). But now I have skin thickening in areas that suggest diffuse. I am hoping to be able to keep going and finish school. I am on Methotrexate injections and feel that I have a great team of Doctors looking after me. I especially love my Rheumatologist's Nurse Practitioner!
I live in CA., have two grown children, 4 cats, and a crazy household of unusal people who are my renters and my friends. So nice to meet you all!!!!!
Laurie Jill

#29 luvbnmom3

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Posted 08 November 2006 - 04:08 PM

lauriejill,

It's so funny you say you're intending to become a Hospice nurse, that's my 2nd choice....I think...lol. Sometimes I still lean that way but I still think it'll be PEDS for me. I'm excited for you that you finally got off the waiting list, long list her in MI as well. I'm taking the prereqs myself right now.

#30 memeto2

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Posted 09 November 2006 - 02:15 PM

hi,my name is melissa(memeto2)i work in a long term care facility as a restorative nursing assistant,i love my job!!! I live in west virginia,born and raised.i am an only child but I have 3 children of my own and 2 grandchildren ages 4 and 5 months.i have a boyfriend but we are on the verge of splittingup,he is not a very good support system to me since ive had this disease.to be honest I can't stand him!!!!you find out who is really gonna be there for you when things get tough,and he is not .well anyways,i have diffuse sclero.have had it for 1 year now.and I hate it ,hate it.im so glad I have you all I know I dont post often enough but im always on here reading.for one thing my computer is total junk.well nice to meet everyone take care..memeto2

#31 WestCoast1

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Posted 09 November 2006 - 03:40 PM

Shirl, Jen, April, Laurijill, Melissa & Sarah,
I am so glad to have read your posts. You are all from different places, geographically and in life, however it seems that we can all come here and find exceptance and understanding.

BTW Melissa, I lived in WV a year and it is breathtaking there...but chilly in the winter. I do miss the summers and fall!

Thanks,
*WestCoast*

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#32 Shelley Ensz

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Posted 11 November 2006 - 02:34 PM

Welcome, new members! This is a great thread to try out your first message to the forum. We'd love to know a bit about you. Just pop in and say a brief hi, or tell us about why you joined, where you are from, and/or what your interests or hobbies are.

My name is Shelley, and I'm from Minnesota. It's rather chilly here today. I sewed a pillowcase this afternoon, and when I sign off, I'm going to sew a coverlet for my musical keyboard.

See, it's as easy as that. Your turn!
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.

#33 Shelley Ensz

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Posted 11 November 2006 - 06:01 PM

Hello Lisa,

I'm delighted that you have found us. I'm sorry to hear about all that you have been through. You will find a lot of wonderful friends here. I look forward to hearing from you again soon.
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.

#34 kiwimum03

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Posted 11 November 2006 - 07:20 PM

Hi everyone,

well I am a bit late on this post, but never mind.

I am a 31year old mother of three and I live in New Zealand.
My three little boys are aged 4, 3 and 17months, and are the light of my life.

I am also married, and my husband was diagnosed with Paranoid Schizophrenia 2years ago.
With my boys and my husband to care for I kind of put my symptoms on the back burner for a while, and it was only until at the begining of this year that I could barely walk from arthritis in my feet and ankles that I sought out help.
This lead to a positive ANA which lead to seeing a rheumatologist, who told me I probably had Fibro.
I sought a second opinion from a great doctor who says I don't have fibro but I do have carpal tunnel in both wrists and we are currently trying to get to the bottom of everything, but I have great confidence in him.
I currently have great troubles with dry eyes, and arthritis and muscles pain in my arms and hands and I think I am getting Raynauds, which I will discuss with my rheumatologist in 3 weeks.

This site has been a wonderful support to me, and I thank each and every one of you.

It is great to have a support group. I also have a good Schizophrenia support group online as well, so the internet is somewhat my lifeline at times.

Its great to read everyones stories!!!

Hugs,

Irene

#35 elena

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Posted 12 November 2006 - 06:34 AM

Hello everyone!

I am new on this forum, I am glad I found such a well informed site as sclero.org.
I am 28 years, I live in Romania, with my parents and I am a doctor for three yers now.

I have been recently diagnosed with Sclerodermia. It has been a huge shock for me, even though I am a doctor, I couldn't think about me having this disease. Actually it is possible that I have this disease for ten years.

My symptom is: a Raynaud Syndrome which I have for ten years, and went from worse to worse but all doctors, even myself, thought is just Raynaud's disease. Last winter I had ulcers at two fingers wich my mother treated with natural remedies (cabbage leaf on finger each night and they healed in a few weeks).

Two years ago I went to a rheumatologist and I did a few test and I found I have some autoantibodies: SCL70 which are very specific for Sclerodermia, but the rheumatologist said I could just have them without having the disease, so I did nothing until this year when I did the tests again and I found that I have the ANA also. My Raynauds is severe, I cannot tolerate cold at all, not even take something from the fridge, or drink something cold cause my hands turn blue. My skin looks pretty good, just that looking at pictures I see that my lips are so much thinner, practically my upper lips it doesn't exist anymore, so that is another sign. A rheumatologist (I have seen three doctors) said that it is definitely sclero and that I should start treatment with methotrexate. I got so scared, I went to other doctors who said that nothing can be done and that immunosuppressants are too soon to be taken.

I went to a doctor who treats only with natural remedies and I started a new lifestyle now, and I treat myself only with natural remedies, which don't have side effects. My goal is never to take drugs if possible, all substances are found in plants so why should I stress my body. True remedies are: diet, fresh air, therapy with water, plants and first of all, faith. My advice to everybody is to spend time trying to find spiritual faith, in love, friendship, nature, sports, also to eat healthy and be positive. I am completely vegetarian now, I eat raw food which is the healthiest, and I feel better than I was a few months ago.

Good luck to all of you, and keep in touch. I would be glad to answer to any question regarding this disease because now I read alot about it, as a patient and doctor as well.

Elena

#36 Shelley Ensz

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Posted 12 November 2006 - 08:11 AM

Dear Irene and Elena,

Welcome to our forum. Thank you for introducing yourselves and congrats on posting your first message, too. We are thrilled to have you both join us!
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.

#37 WestCoast1

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Posted 12 November 2006 - 04:25 PM

Hello Irene and Elena,
I am also glad to get to know you.

Irene, I have an aunt that lives in New Zeland...she loves it there and we can never get her to visit the states. I am sorry to hear that you have so much going on with your health (and your husbands), but I am glad to hear that you have the internet for support when you need it!!!

Elena, that is very interesting to hear that you have chosen to treat your illness with a healthy lifestyle instead of meds. I am glad that it is working for you.

best wishes,
*WestCoast*

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#38 teeceekg

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Posted 12 November 2006 - 04:49 PM

Hi everyone!

I too am new to this forum but I am finding in a short amount of time it is quite informative and supportive. My husband is the one with systemic scleroderma which was induced by a stem cell transplant for (AML) acute myleogeneous leukemia. He had his transplant 3 years ago and began with symptoms of scleroderma shortly after before hitting his 100 days after transplant. The progression has been severe and many treatments have been tried without much success. He has restrictive lung disease and some cardiac involvement as well. We thought having cancer was bad enough. We didn't realize that he'd be exchanging one disease for another just as severe. My husband and I have been married for 22 years and have 2 children. We live in Nebraska and have seen many different specialists throughout this whole ordeal. These past four years have certainly been a challenge but we just keep on fighting!

TeeCee

#39 Heidi

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Posted 13 November 2006 - 03:04 AM

Hi Teecee,

Welcome to the forums.....it is good to meet you! I am so sorry to hear about your husband's scleroderma and how it was triggered. I am sure it must be very hard to think that the treatment for one disease brought another one on!

Where in Nebraska do you live?

Warm wishes,
Heidi

#40 Sherion

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Posted 13 November 2006 - 03:01 PM

Hi All, I've been putting off posting here because there is not too much to say, but, here goes. I've been married for forty long years, I had three daughters (my oldest died five years ago), I have six biological grandsons and a foster grandson. The boys range from three years to twenty.
I was diagnosed with sclero in January, this year but I've had many symptoms for several years. Most of my problems from sclero are in the G.I. tract, esogophus and now some high blood pressure. My rheumatologist says I have Raynauds but I've not seen the drastic color changes that most get. I really get the "brain fog".
That's about it for me, nothing exciting like travel or interesting jobs, just routine, boring things.
Sherion