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WestCoast1

Getting To Know You - Archives

255 posts in this topic

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

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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.

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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

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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.

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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

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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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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.

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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.

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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

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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

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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.

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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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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

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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

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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

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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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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.

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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

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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...

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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

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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...

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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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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.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Jefa,

 

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

 

Warm wishes,

Heidi

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