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cornishgirl

New member banging head against wall!

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Thanks for the advice Judy and Jo. Having a bit of a bad day today I'm afraid - which I guess is natural in the early stages of seeking a diagnosis. Ended up crying in front of my boss - not a good look! I think tiredness has a part ot play - 5 yr old has chicken pox and 2 yr old just doesn't do sleeping at the moment so I will put it down to that. Lets hope tomorrow is a better day, or at least less waterworks on my part.

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Hello Cornishgirl

 

Regarding the supplements, it may well be the consultant didn't pick up on all of them (?), not a criticism just that they have so much information from us in a small time period! As Jo already said the issue is to not stimulate the immune system.

 

I used to take supplements prior to scleroderma and when I was initially diagnosed, prior to scleroderma I didn't find they made any difference but once I had scleroderma I could not take them because of side effects?! I am back up to about 30 tablets a day again and think that's enough to swallow literally! I have them in little cases and my dearest hubby bought my a cute little bunny bag to put them in complete with handle to carry it around!

 

Crying, yeah you're going to do if you get a diagnosis of anything, do you really think you won't? That's unrealistic and putting yourself under unnecessary pressure although I understand the concern about crying in front of your boss. When at work, now some 5 years ago, I was a boss and never thought badly of emotional staff provided there was legitimate reason and there sure is for you!

 

Fatigue is part of scleroderma but also part of the having children thing as well! There's no cure for either!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Cornishgirl,

 

I'm so sorry you're having a bad day; as Amanda has said, we all take refuge in tears. I remember in the early days before I was diagnosed (and before I joined these forums; I was still awaiting my consultants' appointments at that point) and I went to the doctor because my cough was quite bad, my joints were excruciating and I had convinced myself that I had Idiopathic Pulmonary Fibrosis, having been foolish enough to google it. :rolleyes: I burst into tears in her surgery, which I can tell you is most unlike me (Pollyanna, the cockeyed optimist describes me normally! ;) ) We're all only human (and I don't have two small children, one of whom has chicken pox!!) :emoticons-i-care:

 

Things will improve for you; the beginning of your Scleroderma journey is always the worse time, whilst you're unsure of how bad things could be and are awaiting a diagnosis. Strangely enough, I was almost jubilant (although that's probably the wrong word really) once my consultant told me it was Scleroderma and to do with my immune system. I was so relieved I started babbling incoherently about immune problems in cocker spaniels and how it can affect the breed (I'm sure the poor man thought "We've got a right one here!" :rolleyes: and has considered me a bit touched ever since!! ;) :lol: )

 

I hope that you'll feel better tomorrow and that the children allow you to get a little more sleep tonight!

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hey, I forgot to plug myself, Cornishgirl, have a look at my video about emotional adjustment. We all have to make it, the adjustment that is.

 

Take care and keep posting.

 

 

Jo, I can just see you babbling about immune problems in dogs! You are very unique for sure and you are also very dear to me. You work so hard to keep the forums running smoothly, Chats and news articles, I have no idea how you do it all but I am very glad you do.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Thanks so much, Amanda; you'll make me blush!! :blush:

 

As I've said before, the very best thing about having Scleroderma is getting to know all the really lovely people like yourself and Michael and my other friends at ISN whom I would never have met if I hadn't contracted this weird disease. It's very true that good things can often come out of bad things!

 

Much love to you all,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Just to say that I have scleroderma quite mild with Rheumatoid Arthritis. Well firstly, I no longer worry about it as there's not a lot I can do about it. Have been diagnosed 5 years now and I have got a rheumatologist who has seen a lot of Scleorderma who used to work at the Royal Free.

 

I have been tested for stacks of things. I have strange skin and rosea ( face all blotchy). Been tested for CREST and really all of this time I don't have a firm diagnosis.

 

Basically I have a mixture of auto immune things. I don't work anymore as the stress would bring something out worse then it already is; plus I am weaker and slower. So that is a big help as life is more relaxed; and the rest of me, well you can see the changes in 5 years. I know I have had it longer then that.

 

It's slow, I am alive, still enjoying myself, so I no longer worry. Just take the pills and go.

 

Christine

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Clothes and keeping warm. Well, forget fashion. Some clothes make me feel cold. I wear 3 layers; normally a cotton vest (nice one purple ) which is long. I have all colours then a granny's jumper which comes up to the neck and down the arms but in nice colours with a fleece on top.

 

Long johns if it's below zero. Always jeans as I find them the warmest; always long socks (knee length); always in winter short socks and a long pair on top.

 

And sheepskin boots ( cornish ones ) and sheepskin slippers. Then life is not so bad as that lot keeps the heat in and a hotwater bottle at night, magic gloves and a spare pair in pocket to put on top.

 

Chris.

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Don't take ginko biloba if you are on Methotrexate. Well if I move about my Raynaud's is not so bad. I did have a load of heat pads but have not worn them for 2 years now; I find moving about is the best answer. Some clothes make you feel cold; its the case of finding what suits.

 

I take nifedipine for the Raynaud's but on the whole it's bad if I am not moving about .Best way is to get the vacuum cleaner out.

 

Chris

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