FWD:Not Your Average Club(a wonderful article about living with RSD)

RSD In the News : FWD:Not Your Average Club(a wonderful article about living with RSD)
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From: byrd45 (Original Message) Sent: 8/18/2005 8:34 AM
NOT YOUR AVERAGE CLUB
This piece was inspired by Maureen K. Higgins work

Written by Samantha Lademann

Many of you I have never met face to face, but I've seen you on the Internet, at the library, and in shops. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are "RSDers."

Yes, you and I, my friend, are members in a club. A very elite club. We are special. Some of us were invited to join immediately, some not for months or even years. But unlike most clubs All of us tried to refuse membership to this, but to no avail.

We were initiated in neurologist's offices and physical therapy units, in pain management physicians offices, in emergency rooms, and during bone scans. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and nerve blocks. All of us have one thing in common.

One day things were fine.

We were living our lives, doing our jobs, or we were recovering from an injury, or we had just had surgery. Yes, one minute everything was fine.

Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. It was then that we found ourselves facing the reality of life with RSD.

We are united, we members, regardless of the diversity of how the disease effects us . Some of us are unable to walk or to use our hands. Some eat through feeding tubes. We do not discriminate against those members whose needs are not as "special" or are more involved then ours. We have mutual respect and empathy for all the people who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know that the disease is degenerative and progressive and we hold our breath while we wait for the Drs to confirm what we already know - that the disease has progressed yet again. Without formal education, we could become board certified in neurology, pain management, and physiatry. We have taken on the medical establishments and Workers Comp to get what we need to survive, and to flourish. We have prevailed upon the powers that be to see the medical necessity of medications, Spinal Cord Stimulators, Intrathecal "pain pumps", Ketamine drips, Trigger point injections, nerve blocks, and Occupational Therapy.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "bad days " and gritted our teeth while "moving faster" was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have nodded politely and kept quiet when people who don't have RSD gripe about paper cuts and tooth aches. We have learned that many of our closest friends can't understand what it's like to be in our club, and don't even want to try. We have our own personal copies of the Serenity Prayer We keep it by our bedside and read and re-read it during our toughest hours.

We've gotten up every morning since our journey began, wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. But we keep the faith. We never stop believing, we never stop hoping for a cure. But cure or not. (though that would be great!), the things we will achieve in life know no bounds.

We dream of hitting home runs and of returning to work and of finishing our educations. We visualize ourselves running sprints and marathons. We dream of planting vegetable seeds, riding horses and chopping down trees. Our palettes are smeared with watercolors, and our fingers will fly over ivory keys in a concert hall.

But in the meantime, my fellow members, the most important thing we do, is stand strong and united while we wait for the day when a cure WILL be found.