RSD ~ The Stranger


Have never gone public with my diagnosis of RSD.  It’s rare that I even talk about it with family or friends. There are many good reasons for this, being judged, questioned.. for what is not so easily understood is difficult. In a world where each human will eventually address some kind of illness or injury in their lifetime, it still is not okay to be sick or injured. Disabled in some way. Oh, what a word that is. Disabled. It’s just not okay. Thus, it is usually hidden away.  The more it is hidden, the less likely to encounter numerous questions that are most likely difficult to answer. If I am feeling bold and patient and dare to explain RSD in general, then I must be prepared for puzzled looks and long gazes.

RSD ~ Reflex Sympathetic Dystrophy, also known as CRPS ~ chronic regional pain syndrome.  It’s not a new thing, been around for quite a while. Usually caused by nerve damage from an injury, but not always.  Could be as simple as a paper cut, or as nasty as a crushed limb from a car accident. Maybe a simple surgery. A twisted ankle. RSD  is a neuropathy, as the brain continues to send pain signals to the body long after the injury is healed. Maybe years. Maybe for a lifetime. No one knows for sure, and each case is as different as the person. No two cases are alike. RSD is chronic and  debilitating in many cases. Treatment ranges from medication, nerve blocks, spinal cord stimulator to pain pumps and more. Each patient has many choices to make as there is no one standard treatment. Muscle atrophy can be common. Nerve damage. Its pain. One day is good. The next day is bad. It spreads and mirrors to other parts of the body. It pretty much does what it wants when it wants. No rules or guidelines to follow. The treatment works one day, maybe not the next. And then there is flair. When RSD seems to go beyond any boundary, any medication or treatment and its a free for all. Nothing about RSD is predictable except…  the pain.

In late summer of 2001, had my first root canal done. After my dentist determined it was not a fractured tooth, I went with his advice to seek this treatment and visited the specialist he recommended. Four trips later, root canal finished and all seemed well.  Months later as I was sitting at my desk at work one day, an awful pain in the bottom of my foot started. Typical female thinking told me it was caused by years of heeled dress shoes, and now my foot was revolting. Foot doc injected a block into my foot and it seemed to help. A week later, that pain came back, not just in my foot, way up to my knee. It got worse quickly. Another nerve block, more pain. Something was wrong. When it was suggested to cut the nerve in my foot, I knew it was time for an orthopedic specialist.

Sitting down in the exam room at the ortho’s, diagnosis was very quick. The only thing I had done was take my shoes and socks off. RSD. Doc explained that a second opinion with a foot/ankle specialist was needed. He dashed off to make the arrangements and I sat dumbfounded. A week later, the top foot/ankle specialist in Charlotte, NC was waiting for me when I arrived. This left a very odd feeling in me, since when do you not wait? After the exam and visit I remember standing in the parking garage. Just standing there. Stunned. RSD confirmed. Do I go home? Back to work? What do I do now? I really had no idea. An appointment was made for me to see a pain specialist. That was it? Where was the surgery or whatever it was going to take to fix this? Wait a minute!!!

It only made sense to me in these moments to realize the beauty of the day. Mild temp, sunny. Fresh air and blue sky. Stop all this thinking and come back to the moment. I think I called my Mother. In my mind’s eye, I could see a very thick forest ahead. It was dark, musty, full of uncertainty and I did not want to enter this forest. For now, I would look at the day ahead and not beyond. Just this moment, just this day.  Back to work.

“You must do the things you think you cannot do..”    Eleanor Roosevelt


About Leslie Kay

Life and RSD warrior, sarcoidosis fighter and new blogger enthusiast. Lover of... a great cup of coffee. Let's tell stories. Born in Saginaw, MI USA but raised in Lincoln, NE and Norman, OK. Have lived and worked in many states, including Florida and North Carolina. Currently reside in Texas, USA Attended the University of Oklahoma, and have worked for hospital's as a nurse tech and pharmacy tech. Medical waste field as inside and outside sales of bio-hazardous waste disposal. Am a daughter, a sister, a niece, an aunt, a friend, a good neighbor. A true lover of life and animals.Spiritual.Devoted. Love nature. Adore the ocean. Like to consider myself somewhat of an activist in today's very confusing political times. A champion of RSD/CRPS and related causes, and those effected by this disease.
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