You are not alone: My Lupus Story Pt.3

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On Monday I went to a coffee and natter meeting with other people from the East Midlands Regional Group of LUPUS UK. I went to my first one of these last October and since that time volunteered to set up and manage our Facebook page…click on the butterfly for the link

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I love doing this, sharing posts from other sites, finding inspirational and motivational posts from a range of sources and seeking out interesting articles. Then back in April whilst attending the regional AGM I was elected onto the committee. The highlight of that meeting for me was taking part in a taster session of Tai Chi for health. So relaxing I nearly fell asleep. You can find out more about this here…again the picture is a link.

taichi

Back to Monday. It was fantastic to meet two new members including Sue Buck  and  Annie supported by her mum and boyfriend. Apologies already made to Sue since Liz decided we should take a picture of the event after Sue had left!

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It is always good to talk about and share each other’s horror stories! Sue is very proud of her grizzly photo which reminds her of how much better her leg is now and Liz kept reminding us she was here to be cheered up! As you can see we drank plenty of tea etc and Annie and her mum sampled some extremely chocolatey cake, all in the name of science since it was gluten free…

I had remembered to pack some LUPUS UK goodies such as book marks and balloons, information leaflets and the introductory video. If you go to the website you can see what they have to offer both in terms of support and the afforementioned goodies. Clicking on the badge will take you to the website.

54-800x800Liz, the newly elected Chair of the regional group has been working hard on updating the regional site which is taking shape very nicely and she has even incorporated a moving, yes, MOVING butterfly! Sounds like a challenge to me! Click to access the site. Here goes…

bew. mooie vlinder

The following extract is from LUPUS UK-

So it’s Lupus…

Systemic lupus is a chronic and presently-incurable illness of the immune system, a condition in which the body’s defence mechanism begins to attack itself through an excess of antibodies in the blood stream causing inflammation and damage in the joints, muscles and other organs.

The name systemic lupus implies that almost any organ or system within the body might be affected andlupus is perhaps the classical multi-symptom illness, deserving of far greater priority and investigation by the medical community.

Discoid lupus is a condition of the skin alone, and in a very few patients can develop into systemic lupus.

Lupus may be triggered by various means and can present in a bewildering number of ways, even to the extent of mimicking other diseases such as rheumatoid arthritis or multiple sclerosis.

The causes of lupus is not positively known though research has provided evidence implicating heredity, hormones and infections including viruses.

Some 50,000 may have lupus in the UK and 90% of sufferers are female, mainly between the ages of 15 and 55.

With its many symptoms, lupus can often be overlooked by a GP or consultant which may delay final diagnosis and a vital start to necessary treatment which can contain the disease and hopefully limit potential damage to the kidneys, heart, lungs or brain. Those diagnosed usually remain in medical care and receive ongoing treatment. Many symptoms will have less impact but there may be side effects.

Lupus can adversely affect the lives of sufferers and their families, and influence relationships with friends and business colleagues.

Visit NHS Choices for further information about lupus

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Why the Butterfly and the Wolf you ask?

Here’s a good explanation from LUPUS UK again…

THE BUTTERFLY

Many lupus patient support organisations across the world use the butterfly for their logo, in various different shapes, styles and designs. Quite a number of patients have the malar rash across the cheeks and on the bridge of the nose and this is said to resemble the shape of the butterfly, hence its adoption by way of a logo.

LUPUS UK is unique in that we have incorporated the butterfly not with wings spread but poised to fly and we see this as the Butterfly of Hope, representing the patient achieving all that is reasonable and possible despite presently-incurable lupus.

THE WOLF

Systemic Lupus Erythematosus – this long Latin title beloved of clinicians, often in its shortened form of SLE. Most patients and support group people use the word lupus.

Lupus is the Latin word for wolf and the best explanation that we have heard to date suggests that the heavy facial rash found in lupus vulgaris was likened by doctors to the scarring that builds up around the muzzle of young and adult wolves from eg food begging by the young and playful and not so playful snarling and biting in the adults.

All illnesses seem to move on and relatively few cases of lupus vulgaris are now seen but the name has stuck and wolf is often alluded to in articles as being the villain of the piece in lupus. It just happens that, all those years ago, they just used his name………

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And remember, YOU ARE NOT ALONE! Music with the link!

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Author: onoodlesstitchcraft

An erstwhile teacher who has taken a new path due to illness and returned to an earlier existence exploring her artistic and creative skills of stitchcraft. My oldest son laughs and says I am as mad as a spoon, qualifying the comment that I am not like other middle aged mothers... well hurrah for that! So what do I do? I love to cook, I am never without a craft project or a few on the go, I love my garden, walking, nature and the environment. I am a magpie for vintage patterns and love colour. I get pleasure from creating and giving to friends. I have a rabbit! I ride a bike and recycle... Drink too much tea and like nothing better than to lunch with friends. Snuggling up on cold winter nights is essential. I like the theatre; musicals and dance in particular. Amongst my favourite films are Seven Brides for Seven Brothers, Singing in the Rain and Fried Green Tomatoes. I love to read anything from Crime thrillers to classics (love Wuthering Heights) or biographies about inspirational people. I hate sexism or racism and disingenuous people. I value friendship and above all else my family.

3 thoughts on “You are not alone: My Lupus Story Pt.3

  1. whoops, i liked my own post! Didn’t mean to, didn’t know I could, well I do, even if it appears narcissistic! He he!

  2. Thanks for your comments and this great lupus awareness post. The conversation about butterfly v. wolf is indeed one of interest. I have been just amazed that my post about this subject in April last year has my highest stat for reads above any other post on my blog over the last three years. It still gets more daily reads than any other post. I’d love for you to post a comment with your two cents worth. It WILL be read. http://lupusadventurebetweenthelines.wordpress.com/2012/04/24/lupus-and-its-mascot-butterfly-or-wolf/ LA

  3. Hi there, thanks for your comment. I have been over to your blo and responded! I like the fact you see yourself as a Lupus adventurer- a very positive notion and one I share xxx

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