Dissension In The Ranks

I belong to over 15 adult, RSD related groups on Facebook and never have I ever seen so much catty behavior in all my life!!  Seriously people??  C’mon now!!  We’re supposed to be “helping” each other, providing “support” for each other, “listening” to each other, and for God sakes, not cutting each other down!!  We need to bond “together” to promote awareness, possible treatments, and positive attitudes.  To the, yes I’ll say it, WOMEN who have turned on each other, belittled each other, verbally abused each other, attacked each other, and spread lies and rumors about each other, I have this to say to you … HIGH SCHOOL IS OVER!!  WE are fighting for our lives here!!  How dare you climb to the top of your high horse and be the cause for additional stress and pain to another sufferer!!  Yes, I am pissed!!  This falls under my heading of “Bullying” and I have zero tolerance for it!!

Facebook has become a Godsend for us RSDers.  We have found that we are not alone in our fight against the pain.  I have over 150 “friends” that I have never met, but we have a formed a bond through RSD, and quite a few of us have become very good “friends.”  And the one thing I have learned, more than anything else, from these people is that even a cripple with an open mind and a big heart can move mountains.   For instance, I have never been face to face with the Warrior Mama or the Penguin, who live in Florida, but, thanks to FB, they started Crazy Sock Day, sucked me in to the event, and then they let me run with it this last year.  We have raised awareness together and brought comfort and hope to each other.  And then there’s Raspberry Shortcake, who lives in PA.  Never have we seen the whites of each other’s eyes, but because we feel like the pioneers of the new onslaught of sufferers (we‘ve both had it since ‘91), and have tried similar treatments, and found solace in the same things, we have become confidants and true friends to each other.  I reconnected with my Godfamily through Facebook and RSD (dammit), I met others in my area with RSD and have been able to meet them face to face.  I need these groups!!  To keep me focused on the fight, to be my sounding board, to get me out of my own head and help someone else who is struggling, I need them!!

Most of us are confined, in one way or another, to our homes.  Because it hurts too much for us venture out in public when it’s cold, or windy, or snowy, or rainy.  Because we can’t always wear enough clothes to cover our private parts since our sensitivity to touch, of any kind, is amplified to an excruciating level.  Or because we’re afraid of slipping on the ice,  Or because we’re too hopped up on our meds to drive.  Or because … ah hell, all of the possible reasons are too numerous to name.  Our social lives are right here, on the computer.  Yes, some of us have been able to re-forge a trail towards independence, but not all of us.  I can still get out from time to time … and it’s been more and more, lately, since I have constant support from My Team and my family.  It’s been fantastic!!  I get to see real faces instead of profile pictures!!  I get to hear voices (not just the imaginary kind) without having to hold my phone up to my ear for hours on end.  I am getting more comfortable allowing certain others to see me in pain so that they have a better understanding of what “good pain days” and “bad pain days” look like.

But I need my network!!  The drama and BS that has transpired over this last week has caused people that I have come to care about to leave these groups.  And yet the instigators remain, perched upon their roosts, waiting to descend upon the next unsuspecting victim who is seeking help and advocacy.  I am here to tell you that even the vultures can be shot down if you have the right gun (ally, advocate, attitude) in your holster.  

I have faith that I can be that gun, if I am sought.  I have faith that the cattiness will subside for a while, and rationality will resume it’s roll as our overseer!!  And I also have faith that as soon as I take a lavender Epsom salt bath, drink a cup of chamomile tea in between pots of coffee, and do some bio-feedback breathing that this last round of “She Said, She Said” will be a distant memory.  Onward and upward people!!  We have awareness to raise!!