Amy's Journey with...

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness Seizures (Complex Partial Seizures) ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I ~ Migraines ~ Obsessive Compulsive Disorder ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis (Autoimmune Hypothyroidism) ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Monday, June 13, 2011

EDS never plays nice

Another person in the EDS Community has been lost, though this time it was not to EDS. Barbara Mostow Goldenhersh passed away from breast cancer this June, a few days ago.  Another EDSer is fighting for her life in the hospital.  EDS is such a stupid, stupid disorder.  Not only is it a thief, stealing someone's life and dreams away from them, but it also is a murderer.  It doesn't care whether it steals from or murders a child, mother, father, brother, sister, cousin, aunt, uncle...it doesn't matter who you are.  EDS steals such a big part of your life away, so many of your dreams, your plans for the future.  EDS steals it and leaves your mangled body for you to pick up and find new hopes and dreams if you are lucky.  If you aren't, EDS sneaks in, murdering those unlucky enough to be born with the vascular form of this horrible disorder.  I wonder sometimes where on the "horrible scale" it is when people are not yet at the stage to accept EDS.  It is a hard place to be for long, and it is somewhere you don't want to hang out.  Yet there are those who let themselves live in that lonely place.

Right now I'm finding it hard to deal with EDS.  It's always harder for me to deal with it when it's after an EDSers death, even though that's not what took Barbara from this world.  She shouldn't have had to suffer EDS then get something horrible like breast cancer, too.  It's not fair!!! Why did she have to??? Why???  And why won't EDS ever play nice????????????


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