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fjperry

Newly Diagnosed - Possibly CREST

33 posts in this topic

Hi Felicia,

 

The world of scleroderma does seem a very frightening place at first, until you find a forum like this and you realise you are not alone and you are not about to die. I was diagnosed with systemic sclerosis about fifteen years, at the time my General Practitioner dismissed it as something that would affect my skin when I am older and left it at that. Last year things kicked off a bit and the S word was mentioned again and the rollercoaster ride started. At first I was frightened when I realised for the first time what I had really got, (I didn't have access to a computer in the 1990's) but then it suddenly struck me that I had had the disease for at least fifteen years possibly longer. With acceptance comes some sort of peace of mind, I have it and I can't change that fact, so learning to live despite it, is the key.

 

As to dying, I seem to remember reading somewhere that more women get this disease, but more men die of it, so on a positive note you are in the right gender group, (as if we didn't know that anyway girls!)

 

You take care and try not to worry, worrying will not make it go away, it will only make you feel worse. So chin up and kick butt!!!

 

Cotton wool Hugs

 

Sandy B

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Hi Lulu -

 

When you say that you saw 3 specialists, what kind?

 

I've been to a number of specialists and they all came up with the same diagnosis, scleroderma. But they all had different specialties (e.g., GI, dermatologist, endocrinologist).

 

Thanks!

Felicia

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Hello Sandy B - :)

 

Thanks for the inspiring words.

 

I've read either on this forum or other websites I came across during my research, that scleroderma can go into 'remission?'. I'm not sure if that's the correct term or not. Is that what happened to you? I just wonder what was going on during the time your doctor said it was only your skin to once you were finally diagnosed.

 

It's hard not to worry. I still haven't told my 18 year old the real story of the disease and what I'm really going through. I'm picking her up from college for the weekend and wonder if I should give her the complete picture. Or should I just update her when things start getting bad and I Have to tell her? I just don't want her worrying needlessly when she needs to focus on school. She has a full academic scholarship and has to keep her grades up. I feel knowing this may not be such a great idea right now.

 

Thoughts?

 

Felicia

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Hi Felicia

 

I really agree with all the others on here who are reccomending that you press your doctor to go onto medication. I also think it is really important to find a Sclero specialist.

 

I am not a medic but I hate to think of you fiddling while Rome burns.

 

Keep your chin up and get on the case.

 

Vanessa

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Hi Felicia,

 

My son went off to university in September. Like you I didn't want to tell him too much, just in case he decided not to go and I didn't like the idea of that happening as I want him to live his own life and not put it on hold because of me. I told him what I thought he needed to know as matter of factly as I could, I assume I fooled him because off he went.

 

May be you could put off giving her the full picture just a little bit longer (or dilute the facts down) until you have got your head around it all and you feel strong enough to deal with it yourself. If she can see that you are strong and coping with it, then hopefully she will worry less. But like us our children also have access to the internet, so there is always the danger she may do her own research and come across all the scary stuff anyway, so it is a difficult call to make and the flip side of the coin is, that it is important to have family and friends on board so that you get all the help and support you need with this.

 

I'm sure you will find the right words and the right time, so good luck and take care.

 

Sandy B

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Felicia

 

I went to two rheumatologists, one who said maybe lupus and one who diagnosed me with lupus, so I went to the lupus clinic in the city that I live in and saw a immunologist. She diagnosed me with Scleroderma.

 

The reason I went to so many doctors is that I was unhappy with the care I was receiving. I wasn't looking for a different diagnosis. When I went to the lupus clinic they started from scratch and tested me for everything. They took 15 or 16 vials of blood, a complete medical history and asked lots of questions.

 

I'm concerned that you are just searching for someone that will tell you that is is all a bad dream. At some point you're going to have to come to terms with it and take control of your situation. Finding a doctor that you can talk to and will take the time to explain things to you is important and will help you accept that you are ill. You've taken a huge step in getting diagnosed and it's scary. Trust me I know, I wish I had lupus, because when I thought I had lupus it looked like I had a mild form of the disease.

 

If you learn all you can and take an active role in managing your disease it will help ease your mind.

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Hello Lulu -

 

You are correct! I was trying to find a completely different diagnosis. I didn't want it to be what it is or coming to be.

 

Yes, it is very difficult not to have this in your head on a daily basis.

 

Unfortunately, I am pretty tired and it's very difficult for me to focus and stay awake long enough to complete a thought here.

 

I'll continue to check in throughout today.

 

Thanks!

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Hi Felica,

 

Just wanted to give a word of encouragement on the child front. My son,who is 19 (20 at holiday), is getting ready to embark at university in September.

 

I was diagnosed last July with systemic scleroderma, and over the last few months its been a roller coaster ride of emotions and coming to terms with all the disease brings our way, but our children are a lot more intelligent and resolute than we think! We still see them as our babies and have this great need to protect them from the harsh realities of life, that's what us mums do! But as young adults, they need to be aware and told what our illness is and how it affects us,and above all.

 

Be honest and upfront with them. I sat my son down and we had a lovely talk about things and I gave him the chance to ask me his worries, and when things do raise their heads, yes he worries but he knows that I am in control and have been well looked after. He has been wonderful, he knows that he must get on with his life and education and move into a new way of life at university and that's what I want for him. You know your child better than anyone, but if they must know then let it come from the one person they love and trust the most. I am sure you will be pleasantly surprised how well they take your news and its one less thing for you to stress and fret about.

 

Warm Hugs,

 

Lynn

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