Astray

Oh blogiverse. Its been a tumultuous time in my world. This year has felt as though my path had been steered directly toward a funnel cloud not knowing what fury it would fling my way.  There have been some incredible highs such as receiving my first custom wheelchair (Permobile M300) and deep lows including a rapid physical decline and the death of a dear friend. To sum it up I lost my "mojo" for a while. More

Causing A Stir

Advocacy isn't easy but ignorance is worse. Unfortunately there are many happy in their "fool's paradise" who choose to perpetuate misconceptions that are more comfortable to them than the truth especially when related to health. (more…)
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When In Doubt “Psych” It Out

Hypochondriac, Conversion Disorder, Anxiety, Depression all things people with rare disorders or unusual presentation are bound to be told they have at some point. True our horrible symptoms can casue psychiatric complications. Who wouldn't be anxious when your joints suddenly dislocate or you vomit at random and people keep telling you its all in your head? More

Lyte Me Up!

Chronic illness or not at some point everyone experiences the kind of dehydration that drags you down to a listless lump. With chronic illness whether it is the disorder itself or the medication and treatment prescribed to you dehydration and electrolyte imbalance can be a daily battle. (more…)
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May Is For Zebras!

May is designated as the awareness month for Ehlers Danlos Syndrome (EDS) which is a type of connective tissue disorder. Connective Tissue Disorders (CTD) are a collection of heritable genetic disorders that effect tissue such as collagen and cartilage. Connective tissue is present everywhere in the body from the skin and eyes to our blood vessels and digestive tracts. So depending upon the particular mutation you've inherited you may have limited issues or head to toe involvement. More

“Floxed”

As enticingly fetishistic as the word sounds sorry to disappoint you but this is wholly medical.¬† "Floxed" is a shorthand you may come across in internet groups and support forums especially relating to various connective tissue disorders. (more…)
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