Cuppa?

1Most of you know that I did an online course about blogging in May/June.  I have been learning from the maestro herself, Pip Lincolne.  Have you seen her blog Meet Me at Mikes? I’ve still got so much more to learn and things to do to improve things around here, so I have signed up for the next intake as well.  I’m going to be like a Year 8 girl this time instead of a Year 7 newbie.

When I signed up for the course, I didn’t really look into it too closely.  It was an impulsive decision.  I’ve been writing parenting posts for Kylie over at Nic-Nac since the beginning of the year and I thought it might be good to find out what constituted proper ‘blog writing’ so I could see if I was doing it right.  I didn’t consider the possibility that I might make friends!  But that is exactly what has happened.  You’ve already met some of them if you saw my post here, called Chain Gang.  It’s like I’ve been milling around the quadrangle of this cyber secondary school, scratching my toe in the dirt, noticing the people I think are really cool and then… I’m in their gang!  These are my people, I have found the kids who like to hang out in the library at lunch time or discuss poetry under the shade of the trees.  Kids who want to run for school council or paint the sets for the school play. The sometimes-rebellious-but-never-suspected-because-we-look-too-much-like-nerds-crew. My kind of people.

We have formed a kind of community that will carry on long after the course has finished.  It’s a lovely place to be. A common room full of bright bean bags and big ideas, questions, learning and lots of support.  This week, our teacher, Pip, has invited us to join a ‘linky’ on her blog.  If you head on over there you’ll see links to all the blogs created or perfected during the May intake.  I’m there too, hanging out with the kids in the common room.  Come and have a cuppa with us.  Today we’re talking about five things we are loving right now.

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I am loving my red scarf.  It’s a deep, deep red.  Warm and super long, it covers my tummy when it is embarrassingly distended.

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I love my family.  We are many.  Last night there were eight around the table.  My immediate family is four, but we have two teenagers (from other mothers) who live with us too, my sister-in-law is staying, and last night, my daughter’s bestie was with us as well. She and her family are so much a part of our family that when we’re together we call ourselves by our hyphenated surnames.  Their close proximity to us in distance and heart gives us a true community, right here in urban Auckland.
It’s big and beautiful, my family.

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I love sunshine on my shoulders.  The winter sun is so much more appreciated by me than the summer scorch.  I love being right here on my bed while the sun inches it’s way across my feet and up, until it blankets me entirely in warmth.

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I love being around extraordinary women.  Recently I had tea with my sister in law and my Granny, two inspirational people who help me to be my best self.  Time with women is good for the soul.  So is a cuppa.  Put them together,  ahhhhhh, bliss.

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I love tea.  Warm, liquid love.  That’s what a cuppa is to me.  Comfort; me time, restorative repose.  A hiatus, a tiny, hand-held hug.  I love a good cuppa.  Thanks Pip Lincolne for inviting us all to have a cuppa tea with you.  Click here and see what Pip and the Pipsters are loving at the moment.

Might just go pop that kettle on for another…

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Top 10 Dysautonomia Links

I’ve been sick for a long time.  Back when it all got bad I didn’t think illness would last this long;  any information I found, I read and absorbed, talked about with my hubster or forwarded to my doctors.  I certainly didn’t save the links or think I’d be collecting them.  So, because this blog is a resource as well as a record, I am going to go through and find and rate the top ten links I’ve been looking at lately.
Do any of them relate to you too?
I’d love your comments or suggestions for adding to this page of links, all recommendations welcome.

Screen Shot 2014-05-31 at 3.50.17 pmThis blog…
Michelle is the literary mama of the Dysautonomia communities in Australia and New Zealand.  This weekend, she is presenting at the Emerging Writers Festival in Melbourne.  She is loved by all for her humour and her intellect.  As a neuropsychologist, her scientific approach and her hilarious and heart rending explorations into the realities of Dysautonomia make her blog a ‘Go To’ resource for so many of us:
http://bobisdysautonomia.blogspot.co.nz/

This video…
about treatable forms of Dysautonomia.  Still my source of hope.  Recorded during the Syncope and Dysautonomia Symposium in the USA, 2011.
Dr Steve Vernino, Associate Professor of Neurology
UT South Western Medical Center, Dallas
https://vimeo.com/32792885

This PDF for clinicians…
From the Mayo Clinic. A flow chart providing information about the testing algorithm for autoimmune dysautonomia:
http://www.mayomedicallaboratories.com/media/articles/algorithms/adysautonomia.pdf

This website…
caters to the information needs of Patients and Doctors.  It is well organised and easy to use. It was founded by Lauren Stiles, a big mover and shaker in the Dysautonomia community in the States.  I love her passion to help people find answers, even after she has already found her own:
http://www.dysautonomiainternational.org/page.php?ID=125

This overview…
of Autonomic Disorders of the Neuromuscular variety. From the Neuromuscular Disease Centre, Washington University  USA
http://neuromuscular.wustl.edu/autonomic.html

This update…
over on Dysautonomia International about promising research into the condition Postural Orthostatic Tachycardia Syndrome.  Research in the area of Autonomic Dysfunction is not as prevalent as the more frequently diagnosed conditions in the world of medicine.  This latest study is giving POTS patients new hope!   New Evidence of Auto-immunity in POTS:
http://www.dysautonomiainternational.org/blog/wordpress/new-evidence-of-autoimmunity-in-pots/

This organisation…
Dinet and Dynakids were one of the original Dysautonomia information portals and patient forums.  There is much good information to be found here. They are US based but have an international following:
http://www.dinet.org

This video about POTS…
was the first time I saw doctors and patients interviewed about what it is like, the aetiologies and symptoms of Postural Orthostatic Tachycardia Syndrome.  Still has many useful and relevant sections and is helpful for family and friends who don’t understand what and why POTS patients feel, living with POTS:
http://m.youtube.com/watch?v=8UPMYNkm6Bc

This article…
about management of patients with dysautonomia who need a general anaesthetic for surgery:
http://www.anaesthetist.com/anaes/patient/ans.htm

This Summary…
of Autonomic Testing.
http://www.touchneurology.com/…/…/articles/9076/pdf/hilz.pdf