Yank, my tale... (A day in the life o... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Yank, my tale... (A day in the life of a Yank in England)

uknlv profile image
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Well I guess I will start with introducing myself, kinda like standing up at your first AA meeting, and no I have never been to one but have seen them loads of times on TV or the Telly depending on your country! 8) 'I am Jean and I have Scleroderma, Raynaud's, Sjogrens, Acid Reflux, Lichen Sclerosis and a host of other problems not to mention a few mental ones, which if I am honest I was always a bit crazy the condition has just given me a good excuse for it now! '

I have been suffering from the various symptoms of Scleroderma and Raynaud's for many years, they just hadn't been given a name yet. I had Raynaud's, which I noticed about three years ago, but as I am transplanted here in the UK from Las Vegas, USA, I thought it was just down to how much colder and damper it was than Vegas. I found out I had Scleroderma quite by accident at the end of 2010, I went to my GP to get a referral for what I thought was Arthritis, my hands were really tight and it was becoming difficult and painful to bend my hands. Arthritis runs in my family so I figured I am 46 I guess it was now my turn to have it. Many tests and poor pincushioned me later and I was told I had Scleroderma, Raynaud's and so on phew! And I was also told how lucky I was that it was Limited Systemic Sclerosis, and I thought 'You must be kidding right!' Lucky to have all this pain, to be so tired I can hardly move, my hands and feet turn into white and then blue lumps on the end of my limbs, yeah I was lucky. *)

I was told by my doctor to NOT look this condition up on the internet, as it would only scare me, and me being me I promptly looked it up when I got home! And yeah I am lucky at the moment I suppose, it could be much worse. But I am a recent initiate into the wonderful world of Scleroderma and Raynaud's and still dealing with all the issues and limitations I am developing, so lucky is not a word I would use.

I was recommended to go to the RSA site by my doctor, that it had good information for me and it was accurate, so I checked it out and am now a member, I have found another site that is really good as well that has many forums and people who share their experience with us newbies. I was asked to do this blog so that I could share my experience with others, and as I am new to all this hopefully I can help others through my journey into the weird and wacky world of Scleroderma and Raynaud's.

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uknlv
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Emma2 profile image
Emma2

You have a lot to contend with there - I am not surprised you don't really feel lucky. There is always someone out there who is worse off than you though and sometimes you just have to be thankful for the everyday things which you take for granted - like family and friends. It is good that you have found the RSA website and that you are a member. If you have not attended the annual conference they do then I highly recommend it - I have been twice now. It is a positive weekend which is really informative and it gives you chance to meet with other sufferers. Stay positive!!

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