Rallying The Troops

For the next three weeks, I will probably write and/or mention quite a bit about the 2nd Annual Crazy Sock Day celebration that will be taking place, worldwide, on January 24, 2012.  So that you don’t feel left out, here’s why…

99% of all RSDers have a “that day” … that infamous day when their lives changed forever … the day that they developed RSD.  Some RSDers curse that day, others celebrate it, but everyone dreads their RSD anniversary.  It means that another year has gone by without a cure or any sign of relief.  It means that 365 more days were suffered through, and most of those were streaked with tears but masked by smiles.   This is the very reason why I think every RSDer should ‘celebrate’ their day!!  365 more days have been SURVIVED!!!  

Down in Florida, it is no different for little 12 year old Melanie Dickens.  While at a friend’s birthday party on January 24, 2010, Melanie was walking on stilts along with her friends when she fell and sprained her left ankle.  After the sprain had healed, the pain remained … the diagnosis, RSD/CRPS.

Just to give you a quick little refresher course on the beast,  RSD/CRPS is caused by trauma to a nerve or nerves, usually in a hand or foot.  It can be brought on by a sprain, fracture, and surgical incision; or even something as insignificant as slamming a finger in a door or stubbing a toe.  It can also happen as the result of another disease, such as shingles.  RSD has been described as a condition characterized by pain that is over and beyond the normal amount of pain that accompanies the initial injury, and when the injured limb has healed, the out of proportion pain is still prominent.  In addition to the pain, other symptoms include, but are not limited to: blood flow deviations that change the color, temperature and/or skin thickness of the affected area; loss of movement (range of motion), atrophy (disfigurement), increased sweating, and dystonia (uncontrollable muscle spasms and shakes) of that same area.  RSD/CRPS is manageable but not controllable, nor is there a cure for the disease … and it can spread, within an individual’s body, to the other limbs, core, face, and even organs.  RSD/CRPS can also lay the foundation for, and incite, numerous other autoimmune diseases.  Doctors have ranked RSD/CRPS higher on the pain scale than amputation and childbirth.

Once diagnosed, Melanie began a rigorous series of physical therapies, one of which was the desensitization process of putting on a knee sock and taking it off, repeatedly.  Eventually Melanie was able to tolerate the sock and began to look at is a her safety net.  It protected her leg from the pain spiking Florida breezes and hid the often off-putting mild discoloration, while still allowing her to wear shorts in the warmer Florida climate.  But white tube socks were too boring for this mini-fashionista, and her mom knew this.  The only answer here was “crazy socks.”  Tye-dyed, striped, cartoon character splattered, multi-geometrical, you name, it, Melanie now wears it with pride.

Question:  How do you UN-depress  a pre-teen with a painfully debilitating disease??  If you are Melanie’s mother, Laurie, you round up every family member, every RSDer and RSD caregiver that you know, every family friend you can track down and you ask them to wear the craziest socks they can find on January 24, 2011.  I had the privilege and honor of being one of the first people to join the 1st Annual Crazy Sock Day craze and I was amazed at all of the pictures that were posted on Facebook showing their support for Melanie.  So when Laurie asked me if I would spearhead the 2nd Annual Cray Sock Day, I was even more honored.

Melanie’s RSD is still in her left leg, but it has also spread into her abdominal organs causing Gastroperesis.   Up until a couple of months ago, she was unable to keep any solid food down and the pain of throwing up was unbearable, so she had to have a feeding tube threaded through her nose and into her stomach.  Today she will be having a surgical procedure to have a temporary gastric stimulator put in place to “wake up her tummy.”

I will keep you updated on her progress, but I challenge you, RIGHT NOW, to either find, buy or make the craziest socks you can imagine and wear them on January 24, 2012 (3 weeks from today).  And if you’re on Facebook, feel free to search for the public group “2nd Annual Crazy Sock Day” and join in the celebration of a young lady with the spirit of a warrior while helping us to raise awareness for all who suffer from RSD!!  Crazy socks are great conversation starters and when someone comments on yours, you can say, “it’s for Melanie and RSD.”

Have faith people … If a 12 year old can do it, so can you!!