Pants on Fire

IMG_20140106_202032_kindlephoto-31338506Ugh my feet.

Twelve years ago I was hit with the news of having RSD. Reflex Sympathetic Dystrophy. Six years after that an extra treat came my way. An additional diagnosis of sarcoidosis. Two completely different health issues from one possible source,  at very different times in my life.  Both were shocking and unwanted but nonetheless  –  here. It is said that there are certainties in life, illness is one of these certainties. Illness let’s you know you are alive. Out there in the trenches of it all you have with the hope and dream that you still fit in somewhere. Everyday,  surviving in a world that seems to only accommodate and acknowledge the strongest and most fit. Fighting through the deepest stigmas society has to offer us. Healthy. Not healthy.  . I know both sides of this fence very well.

Always was a sports fan. Very fortunate to have had the physical abilities to run track, learn archery, love gymnastics and had enough stamina, endurance and sheer will and confidence to compete on local and state levels while growing up. Even enough to see my way to the Presidential Physical Fitness Award two years in a row.  I sure was one proud athlete and worked very hard to become disciplined enough to achieve these goals. It’s a part of my life I always remember and treasure. Always. This discipline spilled over into my work as I became older. Very pleased to accomplish most goals in my professional life – being focused on productivity and rewarded with deep satisfaction. Life was good and I was in charge.

So I thought. One day I went for a root canal and it was one of those life changing events that would ultimately change the course of my life forever. Six months after this root canal I was diagnosed with dystrophy in my feet. It was to spread up one leg, then the other leg with such force and pain there were times walking was just so painful. My legs became heavy and my walk became reminiscent of a Frankenstein scuffle. The world of one specialist after another then pain docs was maddening.  I was fired from my job and my world became small.  It takes time to adjust to illness in many different ways as in lurches in and bends and folds your life in unwanted directions. As the spread continued to the upper body, one of my options for treatment was ganglion nerve blocks into my spine. This is now six years into RSD and proved to be helpful to slow this relentless spread down and quiet the pain. There is no repairing the damage done so slowing the progress was a wonderful feeling of accomplishment.

Then… I got sick. Straight to bed sick. Feeling like I won’t survive kind of sick.  This was not RSD. This was a “kill me now I can’t take this “… and then some.  Sarcoidosis. Now that is some kind of being sick. Immune system stuff. Just what I needed. In my mind’s eye – no one can convince me that I did not contract this from anything other than bacteria from the ganglion nerve blocks. Not from the drugs used, but rather from the insertion of a very long needle into the front of my neck to the base of my skull into my spine.  My treatment for RSD had led me straight into the waiting arms of sarcoidosis. Or…did it?

Over a year later after dinner one night, I was using a toothpick and watching TV when I felt a lump of something in my mouth.  Where did this come from? What was this? Could not imagine as it was much to big to be a piece of food. I could taste the blood as it filled my mouth and in horror ran to the bathroom sink. I spit it out …looked…and was stunned. In fact, I couldn’t release my gaze into the sink. I couldn’t budge. Packing. Dental packing from the root canal I had years earlier. There it was in all its glory. The answer to the mystery of the RSD and possibly sarcoidosis.  That dumb, stupid piece of rolled up cotton that was never removed after surgery. You bastard! I was staring at the truth after searching for it for so many years. It had always been with me. I just didn’t know.

Is it no wonder why I can hardly talk myself into telling this story. The very rare times I do its met with one of two responses.  Shock is one response – just better to keep quiet. Or.. the opposite response – sheer disbelief.  There are never any questions. That does not mean I am not free of lots of speculation and judgment. That if only I pushed harder. Try harder. Stop pretending.  After all ..I still think and walk and talk – what could be the problem? And by-gosh I even laughed today… I must be cured! My goal is to stay out of a wheelchair, not to jump in one so folks believe my story.

It really happened this way.  And no, my pants are not on fire.

“Courage is fear that has said it’s prayers..”   ~  Dorothy Bernard


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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