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

Scleroderma & Raynaud's UK (SRUK)

11,113 members5,639 posts

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

uknlv profile image
1 Reply

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.

Written by
uknlv profile image
uknlv
To view profiles and participate in discussions please or .
1 Reply
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!!

Not what you're looking for?

You may also like...

Advice very much appreciated

Hello, I am a 56 year old female and I'm a bit unsure where to begin with my story. Maybe...
AMC7 profile image

You've hit a milestone! 2500+ of you now have joined the Raynaud's & Scleroderma Association HU community

Congratulations for building a true Raynaud's and Scleroderma health movement in HealthUnlocked!...
HealthUnlocked profile image
HealthUnlocked

Just found this and thought i would share ;)xx

Dental/Raynaud's Disease Connection In my clinical experience since 1969, I have come to the...

Twisting and it's nothing to do with Chubby Checker.

Hi all I don't post very often but I do read what you guys post. In fact I would say that I have...
angelahook profile image

One of the Scleroderma patients

Hi All, I am new here and I found this forum/group along the way searching for info for...
sa0001 profile image

Moderation team

AnnabelSRUK profile image
AnnabelSRUKAdministrator
Chicunique27 profile image
Chicunique27Administrator
SRUKadmin profile image
SRUKadminPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.