Hey everyone, just a very friendly FYI, not poaching... We have another organization here now. A Syringomyelia group for us Victims (yes, were all Victims) to vent our hostilities, share our frustrations, enjoy our conversations, get the true friendships solidified, and to have the truth along with our families and friends ENTIRELY AND ETERNALLY UNCENSORED. When a SM Victim is pissed, let em sound off...we have more than enough cause to be. We have so many great people and so much learned wisdom we have when pulled together. There arent any medical experts in this field, its true. If there were, hey, they would say something to the tune of WE GOT A CURE NOW! Im just thinking that creating an uncensored group, a firm, can be the other half of some of the other groups we have for support just like this one we are in now, that censor comments and others even require the group owner to approve the posts before they go up, WE DONT, so what we have in this new group or firm is a place that Victims and their friends and family can go to so that no one is left unable to have a place to call their own. Im not proposing an arena of a circus, but I am damn sure gonna make certain everyone has the tools they need to fight this monster with everything they need whether its strategy planning for a doctor appointment, putting together their package for disability, a resume for work, statements for employers and workmans comp, financial assistance paperwork, tips for talking to family members about SM, getting handicap parking permits and modifications, mental health, getting MRIs looked over, discussions about what the reports say and perhaps most importantly discussing the medications we need to function to the best of our abilities. Were all aware of the challenges that we face, but what becomes of the new members of this nice and tidy hell we are damned to reside in? Arent they allowed to be bent about what they are going through without being chastised? YES! For the newly diagnosed and even those that have been diagnosed but are willing to bash your self in the face with a blunt object just to get seen by a doctor, let us see if we can help, and if so, I promise we will! If anyone would like to join please dont hesitate to PM me so I can add you to our family as well so between all the groups, theres something for everyone. -Sam This truly is: Mission: Impossible-Syringomyelia This message will self-destruct in 5 seconds.
Posted on: Sun, 31 Aug 2014 02:33:16 +0000
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