Reply To: Support Group in NYC ??

July 7, 2013 at 11:23 am

Dear Ksasha,
it’s ok to feel lonely…. i know what u mean. but u are truly NOT alone at all. it being a rare disease, CIDP doesnt get enough attention i think. so we’re left feeling alienated and maybe forgotten about… like living on the island of misfit toys. i was diagnosed in 2005 …eight years later, i too battle the constant pain in my feet and awful nerve damage that seems to be all-consuming some days. i do everything possible to stay healthy and fit (diet and exercise) …i have mostly good days, but the bad days wear me out. my CIDP “arsenal” includes mainly a positive attitude, a lot of “being good to myself” (massage therapy, aromatherapy, time off, etc) and a LOT of gratitude for all of the GOOD in my life… these things really help alot. …so, im able to cope. Acceptance is key. ..and distraction from the disease by doing things u really like to do and surrounding yourself with people u truly love to be around… sounds like u have been through alot already, i hope things get better. i just thought i’d reach out and try to allay your fear of lonliness or despair. (or both). ive never really pursued a real live support group other than this forum. …might be nice to actually talk to someone who understands what we go through. my name is Steven and i wish u all the best. S