The reality of Ehlers Danlos Syndome

 

Please say a prayer/spare a thought/take a moment of your time to be quiet and still for my sweet friend Kelly Wehling Hardie and her family.   Kelly died on Saturday, she was 29 years old....that's no age at all is it?   So please, whether we talk on a regular basis or not, whether you have EDS or not.... just say a prayer or take a minute of your day to spare a thought for everyone with EDS....I know I live with it every day.  
She was born 27 February 1983 in Maryville, Ill.. She treasured working with her dad in the crop insurance business, loved her pets, and antiquing. She was an accomplished swimmer, golfer, college and businesswoman.  .
Kelly died Saturday 5 January at Barnes-Jewish Hospital in St. Louis due to complications resulting from Vascular EDS. In addition to her husband, she is survived by a half-brother and a half-sister as well as numerous aunt, uncles and cousins.Kelly's family requests memorials to charity of donor's choice or Ehlers-Danlos Syndrome Network Cares Research Fund at www.ehlersdanlosnetwork.org.

Holiday Cottage in North Norfolk

http://www.norfolk-holiday-cottages.co.uk/cottage/jeckells-cottage.html

   Only a few minutes from Sheringham, West Beckham is in an ideal spot from which to explore all that is great about North Norfolk.    As well as the sandy beaches on the coast, there is the bustling small Georgian town of Holt up the road with its numerous pubs, restaurants, cafés and shops. 
   Blickling Hall and Felbrigg Hall are both nearby and the fishing villages of Blakeney and Wells-next-the-Sea are also a short drive.  The village itself has a very good pub, the Wheatsheaf and a local shop.

   Rustic one-bedroom flint cottage with open plan kitchen and living room. Fully equipped kitchen with hob, oven, microwave, toaster etc. Flat-screen tv and internet access for rainy days.
   Feel free to light the wood burner (logs are provided).   Bathroom is fitted with a bath and a shower over the bath as well as a washing machine.   Bed linen provided but please bring you own towels.

    Sorry no pets

   Short lets also considered. 

Hair...grow it!

This is the longest my hair has ever been - a full 18" - another 2" and it is being cut off for charity.  Dark glasses on as no sleep due to pain.  Admire peter Kavanagh's bum in the background.  Winter Solstice soon - having huge bonfire at Helene's house and a Solstice party.  Hopefully going on Buddhist retreat for Christmas.

Wigs galore!

 Take one box of e-bay wigs and four people and you get a whole load of silliness.
Later on a very touching moment when we drank a toast to Uncle Harry as my four family members had all met him, dined with him and appreciated my sadness without Harry in my life anymore.
Long live laughter, love and loyalty.

Lovely family visit

John

Ruud

Margo

Sandra

Four of my lovely Dutch family came over for a week - John , Sandra, Margo and Ruud.  I had three really good days and then EDS flare up - but it was worth it.  So much fun, laughter, stories and love. 

Two carpetmen, two cats........and a happy Tabi

Wimble's comment

In comes the 4m x 4m purple carpet bought from e-bay

The end result

My lovely faux suede deep olive green sofa which no-one is allowed to sit on except me!

Chevvie inspecting Mark's work

A took a long time to get that carpet in!

Hubbie, for reasons only known to himself, vacuums the ceiling

As my computer room was starting to look like the local tip and I kept tripping over the carpet, action had to be taken.   So Mark was called in again and hubbie his ever-trusted labourer.  Chevvie the Cat became Health & Safety and Quality Control and Wimble the Cat remained totally unimpressed with the whole situation.  I, on the other hand, am over the moon!