WestCoast1

Getting To Know You - Archives

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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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