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WestCoast1

Getting To Know You - Archives

255 posts in this topic

Hello Mrs. Zeke,

 

I'm glad you have joined Sclero Forums but sorry that you have scleroderma. As you probably know by now, CREST is also known as Limited Systemic Scleroderma. The only really "limited" thing about it is that skin involvement, if any, is limited to the hands and/or face. But it is a systemic illness and can affect any of the internal organs. Sometimes it is (comparatively) mild and sometimes, not. Everybody is different in that regard.

 

The most important thing is to become an informed patient, so you can take the best care of yourself. Diagnosis usually takes an awful lot longer for most of us, which is not good but at least it usually gives a bit of an opportunity to learn about the illness before being hit with trying to cope with the diagnosis.

 

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.

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Hi

 

I have been diagnosed with Limited SD just 2 months ago this was after approx 14 years suffering from Raynauds & always having a blood test which came back borderline with an autoimmune problem. Well the bloodtest have come back positive & my rheumatologist eventually diagnosed me. I hate my raynauds because I seem to react very quickly to anything remotely cool! I have some facial involvement & possibly my heart. I had a number of tests done & have recently had an Iloprost Infusion however this doesn't seem to have helped a great deal. i have also got Fibro & have had a number of health issues over the last 10 years which now make me wonder if some are related to SD. Still feeling in denial I think & keep thinking it will go away or they've got it wrong. My symptoms are thankfully at the moment mild compared to others on this site but not really sure what it will lead to. Oh and I also don't particularly like doctors, had some bad experiences in the past. Enough of that & onto a bit about my life.

 

I am 52 years old and have been happily married for 28 years & have 2 daughters who have both graduated one in Environmental earth Sciences & the other in History who is also about to go on to do Law. I am a teacher in the UK but have been off sick due to ill health this year but am hoping to return this coming term.

I enjoy walking, photography(still learning), reading fantasy novels and sewing etc.

 

Jen

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Hi Jen,

 

Welcome to the Sclero forums. I'm really glad you found us, but sure sorry it's due to you have scleroderma.

 

Sounds like you have quite a bit going on. You'll find a lot of good information here, advice and good ole friendship.

 

I look forward to knowing you better.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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So glad to 'meet' you Mrs Zeke and Jensue. I believed I spoke to you in another thread, MrsZ, and I look forward to hearing more from you. Jen, this is your first post, but hope it won't be the last. Looks like our UK faction is growing steadily. My symptoms are also relatively 'mild' compared to some on the boards, but the impact on quality of life is all relative, isn't it? I look forward to seeing more of you on the boards. Hugs to both of you.


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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my names jaxs I joined this group in 2006 just after I was dignosed with limited systemic sclrosis, didn't understand wot that was and at times still dont haha, sumetimes I feel very depressed, but I read a lot on this site and has giveing me much hope and courage to get on with my life , and just take one day at a time,

i live in the uk with my 5 kids and beautiful granddaughter, of 3 , i have 1 dog who is huge haha and 2 cats and 10 goldfish, my little boy of 12 has alopicia for 6 years now , but he's got a lillt bit of growth so fingers crossed... i sometimes do feel very not dizzy its like a strange feeling light headed and I fall over , i have to stop driveing at times like that coz my brain dont register traffic lights ...lol sounds mad but as my pals say the mad life of jaxsxxxxx


live life for today and not for tomorrow

 

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Hi, Jaxs. So good to learn a little bit more about you. Animals do help to take the focus off ourselves sometimes. I have a bird and two tanks of small fish. I'd love to have a cat, but we are sadly both allergic. Is the dizziness you feel related to any drugs you are taking? Have you talked to your doctor about it. You are right about not driving. Emotional Adjustment is one of the major things to deal with in any kind of chronic disease and particularly with scleroderma. The link I have given you may prove to be of some help. Do come here often and get to know us better.


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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I am new to the forum. I am searching for information, advice, and answers. I will start by saying that I am not the one who has been diagnosed, or should I say, undergoing diagnosis?

 

My wife is in the process of being diagnosed. So far she is showing signs of MS, but her blood work is coming back with what are indications of scleroderma - in fact it was specifically listed on the report. The symptoms she is showing seem to be all MS related, but I don't really know enough about Sclero to make tha assessment. I read that the combination is apparently rare, like 1:1,000,000...

 

I am also dealing with a lot of anger issues. My wife has triumphed over adversity her entire life - from a awful childhood through just about everything that follows that into being themost amazing and caring mother/human being I have ever met. I am outraged that there seems to be so little ability in the medical community to diagnose these illnesses... and I am angry that after all she has been through that this has now been brought down upon her.

 

I know there is a lot to deal with... and anger seems to be more productive than despair...

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Seeking Answers,

I wanted to welcome you to the Forums. I am truley sorry to hear about your wifes struggle to find a diagnosis for her illness. Please encourage her to post here.

 

You have come to the right place. Many of us understand the struggle to find a doctor that knows enough about Scleroderma to give a correct diagnosis. Often it is worth while to seek out a specialist in your area...or as close as possible.

 

The ISN provides many links to valuable articles, labs, and stories.

 

Thank you for letting us know a little about your situation. Feel free to post often with questions, comments or even a vent or two.


*WestCoast*

 

********

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Hi SeekingAnswers,

 

Welcome to the Sclero Forums. I'm so glad that you found us. I'm really sorry for all that you and your wife are going through. There definitely are an array of emotions that come with this process. I wanted to give you a link on emotional adjustment that may help you and your wife.

 

Don't despair, there is so much that can be done these days with autoimmune disorders. I feel the key is to find the right doctor. If you can let us know where you live, perhaps we can help you locate someone.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Let me add my welcome to you and your wife, Seekinganswers. The diagnosis process is frustrating and often raises more questions than it answers. It is important for both of you to find support with others who are going through the same thing. We have quite a few significant others on the forum who, like you, are looking for information and support. I am glad you found us and look forward to hearing more from you.


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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Hello Everyone~

 

My name is Michelle and I too am a newbie to the forum. I am 40 year old and happily married to my wonderful husband Wayne. We have two boy's 11 & 12 and I have two step girls 20 & 25 both married and the youngest is a brand new mommy. We have 3 big dogs, and 1 cat. We are HUGE dog people. I work full time as a service rep for a communications company. I live in southern California and will most likely be moving to North Carolina with in the next 2 years. (My husband just got transferred out there. He flies home every other week for 4 days). So we are all adjusting to this new life style. My boys and I are staying put until the housing markets turns around. I enjoy spending most of my time around by children and family. We like baseball, movies, swimming, bar-b-ques and hanging out with friends. We LOVE to travel and going to amusment parks.

 

Anyway, I haven't been offically diagnosed with Scleroderma yet. I have had Raynaud's since 2004. I have it in my toes and most fingers on both hands. I see my rheumatologist every month so she can keep tabs on me. I am going for a second opinion this month. I don't feel as though she is taking me as seriously as she could. I am also going to the dermatologist this month as well. I read an article on Scleroderma and it sounded just like what I was going thru. I brought it in the my rheumatologist and she quickly dismissed it and said, "oh you don't have that" I have many other patients that are far worst off than you are. So I put that out of my mind, until the last few months when the skin on the back of both hands started to become SUPER tight. It feels as though I have really tight gloves on. It's gotten so bad that I can barely open jars, write anything by hand and hold large cups. I also have tightness in both my calves. Oh, I almost forgot to mention that I have a ulcer on the tip of my middle finger that I have had since last October. It doesn't hurt as badly as it use too and its a lot smaller that it use to be. I think I have scar tissue there that helps with the pain of it.

 

My rheumatologist has be on several meds for my Raynaud's. I am taking: Prozac, Cartia XT, Plaquinel, Acifex. It's hard to believe that I am 40 years old and I am already on 4 daily medications.

 

I am so glad that I found this forum. I felt so alone with what was going on with me. No one that I know can relate to what's happening. It's scary when you have no one to talk too. :(

 

Thanks to all of you who show so much support! :D


Take care and stay warm,

 

Michelle

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Hello,

I am joining this forum is to get as much information as I can for my eleven year old son. He was diagnosed with morphea almost a year ago. For a while I thought someone was abusing him because of the the marks on his skin. I took him to doctors for almost 3 years before he was finally diagnosed. Most things we lookup about morphea seems to scare him more that help. We looked around on this website together.

 

Thank you,

Phantomwi & son :mellow:

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Hi, Michelle. We are also glad you found us. Even though you may not have a sclero diagnosis yet, the treatments you are receiving are on the right track. Fluoxetine has a double benefit, treating depression and the Raynaud's and many forum members swear by Plaquenil's effects on the general feelings of fatigue and pain of scleroderma. The best thing you can do in the meantime is remain as active as possible and take care to keep warm and avoid Raynaud's attacks. The forum is a great place for information and support.


Hi, PhantomWi and son. I am happy to welcome you and your son to the ISN Sclero Forums. We have several forum members with Morphea and several mothers of young people with morphea and linear scleroderma. Please read all you can and feel free to post whenever you like.


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 Phantomwi and son, and welcome to the Sclero Forums!

 

I'm terribly sorry to hear about your son, I can only imagine how that must feel as a parent.

 

You will find a lot of information, support and great friends here. We look forward to knowing you better!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi everyone, I'm Cleo. I was diagnosed with sclero about a year and a half ago. At first I thought it was an absolute death sentence, but since then I've learned that it doesn't necessarily have to be that way. My symptoms are not too bad -- some sclerodactyly, though I still have use of my hands, Raynaud's when it's cold, moderate to severe acid reflux, some skin thickening (but that's gotten better recently), and joint pain. I am blessed and lucky that my internal organs so far are unaffected. I joined the forums to get more information on management of symptoms, especially the joint pain/arthritis. I'm especially interested in nutrition.

 

Thanks so much for this space to talk about a disease that most people have no clue about!

 

Cleo.

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Hi Cleo~

 

Welcome aboard! I new to the site too. I have found it so helpful and the people here are .............. well, just plain AWESOME!


Take care and stay warm,

 

Michelle

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Hi. I'm Marjori, new girl on the forum.

 

I've been diagnosed with Systemic form of Scleroderma for 11 years. Most of my organs have been involved at one time or another. My GI tract is pretty much paralyzed, so my nutrition/diet is mostly in the form of a liquid called Osmolite. It has minerals and vitamins that sustain me. I add herbal decaf teas, healthy broths and I have a system that I call C and S. For those of you who want to understand this, it stands for chew and spit. Sounds gross, but allows me to taste such things as fruits and other goodies. I don't do this in restaurants!

 

My rheumatologist is my main guy, but I have about 8 specialists related to specific organs. I was told I would live for 5 years, but 11 have passed. Told that doctor not to give people negative, unnecssary or "old belief" system feedback.

 

I believe in miracles.

 

I'm very involved in research online. It's helpful to our doctors at times, to be brought up to date. I write questions before each of my doctor appointments. I always end the appointment with 1) question whether this doctor would like to add anything new to my 6-week standing labwork 2) are there any tests such as MRI's, X-rays, etc. that I need at this time

 

I have a very friendly yet, professional relationship with my specialists. I appreciate their support, although there are times when old doctors need to be replaced with new doctors.

 

Looking forward to the forum and to new friendships. We can help one another.

 

Blessings, peace and Love. Marjori

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Welcome Marjori!

 

Really glad that you found us, but goodness I'm sorry you have Sclero and sounds like you've been hit full force. You have a terrific positive attitude that I'm sure has carried you.

 

Looking forward to reading your posts.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hello, Marjori, and a big welcome to the ISN Sclero Forums. While it is unfortunate that you have had such a rough time of it, I am glad you are willing to share your experiences with others on the forums.


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 Marjori~

 

Your positive attitude is awesome and very appreciated. You will add so much to this site, thanks for finding us!


Take care and stay warm,

 

Michelle

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Hello Phantomwi and Cleo. I too am glad that you found the Forums. There is always someone here that can relate and that is so reasurring.

 

~Welcome~


*WestCoast*

 

********

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I've searched this site for information over the years, but never took the time to register. It's way past time!

 

I'm a 36 year old mommy to 2 beautiful boys (ages 6 and 19 mos), and a wife to a career Air Force officer. We have been happily married for almost 14 years. Our lives are full and busy and FUN!!

 

When I was 25 and living in Vegas ('96), I had this annoying "white numb finger thing" and it was in the middle of the summer! It took a few months but ended up seeing a great rheumatologist there in Vegas and soon was diagnosed with Raynaud's, and a positive Anti-Centromere. My rheumatologist told me CREST might be in my future, it might not...for now, it was "just information to have."

 

We moved all around, we had two kids, I finished my degree, began teaching 1st grade, etc... life was busy and I never went to see another Rheumatologist. Of course hindsight is 20/20, so while six months ago I'd have said I had no need, I suppose I did.

 

Over the years I have progressed ever so slowly. I definitely have the R, some S, and lots of T. I am always complimented on how tan I look too. I figured I was really lucky that the big bad "it" hadn't really stopped me and if THIS was CREST Syndrome, I was jeeeest fine.

 

But I'm not. I'm pretty sick right now and I think my real journey for CREST is beginning now, not back in '96. I have tons of questions and am trying to read as much as I can.

 

I have some lung/heart issues. I'm in the middle of about a million tests and "ologists" and am just trying to be patient while we gather information so we can move ahead. Some days I can handle that, some days I just don't want to!

 

I look forward to getting to know everyone here. After years of infertility (and a support network online during those years that helped keep me sane) I know the value of a place like this.

 

Sorry so long...I got up with the new puppies and am a little slap happy that I can't sleep!

Maddy


Maddy

38 yr old mommy to 2 boys

Raynaud's, CREST diagnosed '96

Pulmonary Hypertension diagnosed Oct '07

GERD, Inefficient Esophageal Motility diagnosed Jan '09

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Hello, Maddy, and a big welcome to the ISN Sclero Forums. I am sorry to hear about the scleroderma that seems to be catching up with you after all these years, but at least you have had times to get to know something about it before it arrived. I am sure you will find this a great place for information and support. I look forward to hearing more from you.


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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