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Nov 26, 2018
Welcome! Looking for ways to help? Here to learn?
Follow me, read each entry, listen for understanding not to respond. Send me a message that you're thinking about me. Don't try to fix me. Ask me how you MAY help. Can implies ability, may is asking for permission. Take me clothes shopping. Ask to pick me up for lunch or ice cream. Don't invite me over and leave me in a corner and ignore me. Do not tell me to eat more EVER. Respect my diagnoses. Don't ask about my scars, I don't want to relive my medical PTSD. My pain is not your pain. You are allowed to have pain too. Ask me how me how you may show me support and love.
Many of my lifetime and chronic syndromes/illnesses/diseases/conditions are described in the journal entries here so everyone gets the same info.
These are some of the conditions I have: Ehlers-Danlos Syndrome (EDS): hypermobile subtype and vascular subtype Meniere's Disease (MD) Gastroparesis Fibromyalgia Sjogren's Syndrome Polycystic Ovarian Syndrome (PCOS) Postural Orthostatic Tachycardia Syndrome (POTS) Lymphedema Neuropathy Pelvic Floor Dysfunction Complex Regional Pain Syndrome
One of these is horrible, all of these is torture.