Carrie Difilippantonio MsCarrieRenae

First post: Mar 23, 2011 Latest post: Nov 15, 2022
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)
Sjogren's Syndrome
Polycystic Ovarian Syndrome (PCOS)
Postural Orthostatic Tachycardia Syndrome (POTS)
Pelvic Floor Dysfunction
Complex Regional Pain Syndrome

One of these is horrible, all of these is torture.

Thank you,


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