A Time to Reflect – Reflex Sympathetic Dystrophy


MaraJanuary, 2014  – It has been 20 years since I had my injury that resulted in Reflex Sympathetic Dystrophy (RSD), now more known as Complex Regional Pain Syndrome (CRPS.) I am 20 years older and I would like to think wiser, however, some days I know that to be false.  One truth I am sure about is how the choices we make affect us, especially when it comes to our health and our quality of life.  Back in 1994, Reflex Sympathetic Dystrophy wasn’t as known as it is today, which isn’t saying much, since it is still pretty much unknown and more people are diagnosed with it per year than Parkinson’s.

I remember in 1994 when the doctor gave me my diagnosis.  Twenty years ago, you didn’t have the internet and the University of South Florida was on my list of places to go to search their medical data base.  I read articles from all different medical journals and various studies on topics from “medications” to “what is a sympathectomy.”  The pain back then was absolutely horrid and I have a faint recollection of asking the doctor to cut off my leg during one of my lumbar sacral blocks.  I am so very glad he didn’t!  What I can share reflecting on myself from back then is that the decisions I made do affect how well I am doing today. Maybe sharing this will help you.

My Key Decisions

Attitude – Your attitude can make or break you. I know how hard it can be when faced with a dismal diagnosis and the depression that can follow. However, our diagnosis isn’t what defines us.

Opiates – I opted not to take opiates. Sitting there at 32, opiates didn’t seem like a viable option for someone with a chronic condition that was expected to last a lifetime.  Right away I had a concern on the long term effects of opiates.  Besides, there was information that opiates  showed a lack of effectiveness in treating neuropathic pain, however, they did work well for other types of pain. I also spoke to several other patients in the waiting room, and they said the opiates seemed to help more in the beginning and not so much over the long term. I don’t want you to think I didn’t take any medications, because I did. I just decided not to take opiates.

Physical Therapy – Rehab! Some people know why they are who they are, however, I don’t know when I became me.  My mom says I was born this way. She said I was always disciplined, driven, strong willed, and extremely independent.  I mean I was 32 years old, I had a lot of life left, this couldn’t be it and it wasn’t going to be it.  If I was going to feel bad, I certainly wasn’t going to do it alone on my couch! I also had always been an exercise type person with a dancing background so I insisted on physical therapy with my insurance company.  It started with the pool, exercise with no weight. Oh how I can smell that lovely chlorinated pool, the pool that turned my black bikini brown after six weeks! So physical therapy began, and what I learned most about physical therapy, is that it isn’t effective unless you participate during your treatment session and actually do the exercises they tell you to do at home.   So, I pushed and I chugged and I puked and I rested and then I pushed and I chugged and I puked and I rested and finally moving got easier.  They taught me how to navigate the stairs, walk properly with the cane, and navigate safely on those surfaces that are not so smooth.  To this day, on occasion, I still use those skills. I also will never forget my physical therapist – she was awesome and her support was crucial for me maintaining independence.

Supplements – Back in 1994, my family doctor was a Doctor of Osteopathy. They had all the training a medical doctor has, yet they also received training in manipulation. My family doctor used a more holistic approach to medicine and added nutrition to his practice. My doctor advised me to take Vitamin C and a B-Complex vitamin. He told me the nervous system needed a lot of B vitamins and Vitamin C was a great antioxidant.  Back then I was overwhelmed with information and it wasn’t until a  couple years later after relocating to Indiana in 1996, that I began taking those supplements and my journey with Nature’s Sunshine and natural health began!

Lifestyle – Nature’s Sunshine is big on education and with that education I could see that I needed to make more lifestyle changes.  My cigarette smoking had to go, I had to let my body rest when it was time to rest, and my diet had to improve. I finally quit smoking and I am very proud of that. For years I wouldn’t admit I was an ex-smoker because I always felt I was only one cigarette away from becoming a smoker.  Now, I definitely am an Ex-Smoker and that feels awesome! My biggest diet changes were implemented after reading Dr. Fuhrman’s book “Eat to Live” – all I can say is read it because a nutritious diet just makes sense!  You wouldn’t buy a Cadillac and replace the oil with the cheapest oil would you? So why when you eat, do you buy food that lacks nutrients and eat it expecting to get results?

SOQI Wellness Products – My biggest helpers came way later in 2005 with the Chi Machine, it makes me think back to movement and physical therapy. I really believe the chi machine was so helpful because it moves your body from left to right in a rhythmic motion, allowing your muscles and nervous system to relax. You are moving so its physical, however, it is seems like it is also a movement of energy.

Decisions and Reflection are a wonderful thing. I am reaffirmed in my belief that the person in the mirror is the final one responsible for our wellness.  We can blame others if we want, however, we make the final choices.  The most important thing I learned is being able to make decisions is a wonderfully huge tool. It just so happens, if you don’t like the decision you made, you can make another one.  So decide something because not deciding means not doing anything or taking responsibility. Not taking responsibility or waiting for someone else to decide is being stagnant, or not moving forward and life is too short for that.