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Scleroderma & Raynaud's UK (SRUK)

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Hello from a blogger

Heucherella profile image
6 Replies

Hi guys,

I am new here. I was diagnosed in October, and my Raynaud's is only mild so far, so I can't complain. It took me ages to find this site, and I am learning so much from reading all your posts. Last week I started a blog about my journey with this disease, so that non-sufferers, or newly-diagnosed folks can learn what it is all about. I am no expert, so some of it may not be quite right. But please feel free to have a read.

anotherpairofgloves.wordpre...

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Heucherella profile image
Heucherella
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6 Replies
Rp321 profile image
Rp321

Today was great for me as well, in my very short time outside i felt normal to!!!!!!

I loved your blog it really did make me chuckle in parts :)

I can completly identify with you - the strategically placed gloves, buying new 'fashionable' gloves in the winter only to find out they are not going to help much and the ski mittens must come out, horrible drive to work, life style changes i have been there to.

I have done some really silly things since being diagnosed when i was 17ish, i cant really remember how old i was (playing out in the snow, over night hike in november, mountin climbing where it was snowey on top, canoeing in march to name a few). The moral of the story is i wouldnt give up on your swimming in the sea just yet, yes it really will hurt but come to that conclusion from experience rather then just saying because you have the lable raynauds you cant do it.

Will i be out playing in the snow tommorow - NO WAY i have learnt my lesson there a couple of years back but do you know what i had fun doing it!!!!!!

I shall look forward to reading the rest of your blog.

Heleno profile image
Heleno

Hi, I've had raynauds for about 8 years now (I'm 46), when I first went to the doctors wih symptoms of numb toes and fingers they never even told me what it was. I ended up self diagnosing by researching the internet. It is only in the last year that one of the doctors arranged blood tests to test my auto immune anitbodies (I think). These came back with abnormalities and I eventually was referred to a rhumotologist and then a gastroentorologist (excuse my spelling). I'm now being monitored by both of these consultants and CREST has been mentioned but very early stages. Despite all this I still am totally confused as to what I have despite researching CREST & whether I should be worried!! But with regards carrying on doing things I love. I still ski, with heated boots, layers of socks and expensive gloves with hand warmers. I cycle & completed training for and taking part in a 400 km charity cycle (all be it in a hot country). But I don't cycle in the winter, I just couldn't take the pain and numbness and have considered giving up skiing even though I love it but I am going to carry on until it does become unbearable. I just accept that even with gloves I end up walking into work with dead mans hands (as I call them) & just have to wait for the numbness to go. I take my hat off to you if you can continue to swim, but you should do it for as long as you can bear it. I read some of your blog and totally empathise with the situations you talk about. Good luck with your blogging :-)

Heucherella profile image
Heucherella

Thanks for your kind comments! I have added another post, about the challenge of handling cold food...

Heucherella profile image
Heucherella

I tried the three glove system this weekend, as it was flippin' freezing!

anotherpairofgloves.wordpre...

Heucherella profile image
Heucherella

Spring is here, and I managed to do some gardening :)

anotherpairofgloves.wordpre...

colddonna profile image
colddonna

I enjoyed your blog. I'm so glad that alcohol is on the list of good things to help us!!! I enjoy that much more than my tea:)

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