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Posts Tagged ‘Blogging’

I started this blog at the beginning of June this year, with lots to say but not really sure if anybody would be interested in reading it.  I knew there were plenty of people out there with Still’s Disease, but finding them was a different matter – we tend to blend in with the RA crowd, or there is confusion regarding the interchangable term Systemic JIA.  Then slowly, but surely, more and more people found their way here, through links, facebook and search engines… and today we reached 1000 hits.

The Top Ten Posts so far have been:

  1. Home Page
  2. My Story
  3. A Slightly Better Day
  4. Still’s Disease
  5. Confused About Still’s Disease?
  6. Articles Section
  7. First Orencia / Abatacept Infusion
  8. Round Two
  9. Poor Veins For IVs Blood Tests
  10. Two Cortisone Shots Later

I hope that the information I post has been useful to some people; it is difficult to find info that corresponds directly to Still’s Disease rather than RA, but it is out there and I’ll keep on posting what I find.  My intention was always to use this blog as a stepping stone to creating a UK Still’s Disease website and I’m hoping to soon make that a reality, so watch this space.

Thank you for reading,

L

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It’s about two months now since I started this blog and to be honest, I’m still trying to find my voice and post in a way that is useful to others, not just self-indulgent.  It’s taking a while to get used to talking about myself, but I guess sometimes another person’s experiences can be as informative as an article and I hope I get the balance right.

My main intention has always been to provide information for people with Still’s Disease, especially those in the UK, since there isn’t an awful lot of information/support out there and this can leave the newly diagnosed feeling isolated. Many people that I have talked with have commented that the Foundation just didn’t accommodate their needs and so my goal is to eventually get an actual UK site up and running. Of course, this is all a learning curve for techno-shy me so I have to take things one step at a time.

I did take a step in the right direction today though, when Arthritis Care added this blog to their Community index.

Thanks guys 🙂

L

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Write about something you know, people were always telling me.  So, with ten years experience of living with Still’s Disease, what better subject to write about when jumping on the blogging bandwagon?

The only problem is where do I start?

I guess traditionally the best place to start is at the beginning and an introduction wouldn’t hurt either, so here we go.  My name is Laura, I am twenty-eight years old and live in the Northwest of England; Lancashire to be precise.  I was diagnosed with Adult Onset Still’s Disease at the age of nineteen during my first admittance to an ‘adult’ hospital, having previously been treated for a similar condition, called Dermatomyositis, at the local children’s hospital from the age of fourteen. 

Since then I have been through a lot thanks to this lovely disease, some of which I’ll share at a later date; but there have also been a lot of good times, ‘normal’ times and plain ol’boring times just like for everyone else.  I live my life as best I can – it’s the only one I’ve got – and although I do get frusrated at times, deep down I know that my experiences have become a part of me; without them I wouldn’t be the person I am today.  I hope that people who may be going through similar things, (either with Still’s or another chronic illness), will  be able to read this and see that despite the rough times, there is ‘Still life’.

L

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