Open letter to Wikipedia about THAT ‘controversy’
Donna Williams diagnosis controversy Dear Wikipedia, I write with reference to this page http://en.wikipedia.org/wiki/Donna_Williams regarding this extract: Diagnosis controversy In a 1996 report,...
View ArticleLet’s stop calling it ‘the autism’: Reward Deficiency Syndrome
In The Jumbled Jigsaw, I wrote of Reward Deficiency Syndrome as one part of some people’s ‘autism fruit salad‘. Reward Deficiency Syndrome (RDS) results in low levels of feelings of reward. As such...
View ArticleDIDville – living with Dissociative Identity Disorder
When people think of Dissociative Identity Disorder (DID) they commonly confuse it with the self injury or suicidal tendencies of Borderline Personality Disorder (BPD) or with the voices of...
View ArticleThe blessings of my autism – by Donna Williams
I thank my autism for many things… for making me appreciative of language, to never waste it, for making me great at my own company and being alone, for showing me the world in a dust bunny and...
View ArticleOverdoing death
Death Becomes Death becomes boring played to the max. Get out the yoga tapes an learn to relax. Death has patience, Death will wait. Fixate upon death = mentally masturbate. Death is worth a thought...
View ArticleRecipe Blog: Coffee and vanilla GF, CF, low salicylate, low sugar ice cream
Chris insisted I blog about our icecream tonight… and it was scrummy. The base of it is cashew cream to make this you take RAW CASHEWS, through them into a blender add RICE MILK enough to mix this to...
View ArticleComing to terms with Ehlers-Danlos type IV (Vascular type)
I saw a Clinical Pharmacologist this week about my Dysautonomia. I have been told I have Ehlers-Danlos type 4… the vascular type (one of my cousins dislocated both hips at age 5 and later survived...
View ArticleFall Apart Syndrome – a poem about EDS IV
Glue me together and glue me well or at least make me youthful so no-one could tell perhaps skin of velvet, the skin of Snow White ears without earlobes, a pixie’s delight the bruises must be that...
View ArticlemEDS IV at the age of 49 – what I may have done right
Being 49 years old and just diagnosed with EDS IV (vascular type) I ask myself how I got this far with a condition that has an average life expectancy of 40 years old and a median life expectancy of...
View ArticleOn going ‘pop’! – Spontaneously bursting finger veins in EDS
Tell people you keep bursting veins in your fingers and seems everyone has a story. Similar, however, isn’t same, so here, in detail is what happens with mine and my cousin’s. I’ve been getting these...
View ArticleLiving with Primary Immune Deficiencies
Every time I think, hey I feel fine, I’ll get back to work, I’ll, I’ll, oh damn, another infection… third one this year… I say, its ok, you are ancient in terms of primary immune deficiencies… 49 is...
View ArticleMedical mysteries and relatives that burst…
DID YOU OR ANY FAMILY MEMBER OR YOUR GRANDMOTHERS OR GREAT GRANDMOTHERS HAVE ARTERIES OR ORGANS SPONTANEOUSLY RUPTURE?…. ie: uterus, spleen, bowel or aneurysm/arterial rupture before the age of 50… or...
View ArticleAutonomic dysfunction and venous insufficiency in older adults with Vascular...
I was diagnosed with central apnea Mar 2012, then with Vascular Ehlers-Danlos (VEDS) in Mar 2013 then also diagnosed then Inflammatory Tenosynovitis Mar 2013. Would love to say the dramas stop there,...
View ArticleNot death but metamorphosis
For some months now I’ve been peeing vast volumes of urine. I kept increasing my sodium intake to try and stop this. Because I already had central apnea (diagnosed in March 2013, 3 months after chemo...
View ArticleLiving with the spectre of metastic breast cancer – and the elephant winks
Finished chemo Dec 2011. Mar 2012 was diagnosed with Central Apnea – brain MRI fine – phew. Inflammatory tenosynovitis made my hands claw up and feet immensely painful to walk… Sept 2012, brain MRI...
View ArticleDeath is an illusion
Don’t fear death…it is just the body evicting its TENANT… we never owned these houses, our biological mechanisms did… we rent space, pay for it with food, drink, warmth in caring for our host… the...
View ArticleSet yourself free from co-dependency
Sick of being used, being a doormat, a pleaser, having people leech on you at the expense of developing their own resources, skills or coming to terms with their own lives? Sick of people disabling...
View ArticleMixed apnea, Ehlers-Danlos Syndrome and respiratory ‘fruit salad’
As a person diagnosed with mixed apnea and Ehlers-Danlos Syndrome (EDS), I wondered about the connections. Moreover, I had recently had 4 episodes in the space of two weeks in which a full on belly...
View ArticleContractures in Ehlers-Danlos Syndrome
Vascular Ehlers Danlos is the gift that just keeps on giving. In late childhood I was diagnosed with juvenile arthritis. In adulthood I got a lot of the joint issues managed until I was around 45...
View ArticleNeuropathies in Ehlers Danlos Syndrome
Breakthrough by Donna Williams Connective tissue can be found throughout the body. Muscles, ligaments, tendons, cartilage, joints, skin, vascular walls, the walls of organs and some of the brain are...
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