RSD Interview #39 - With Tracy Block Zuckerman

HOW AND WHEN DID YOU GET RSD?
I was driving in my neighborhood fifteen years ago and I was in an auto accident. The airbag deployed and crushed up against my left hand, also hitting the right side of my jaw. I was fortunate enough, after being taken to the hospital, that no surgeries were needed and I was released. As I sought out the follow-up for medical treatments, I was lucky that my orthopedist had seen a case of RSD in medical school. So I was
diagnosed just a few weeks after the accident. At that time, I had never heard of RSD and was told to explore a variety of diverse treatments and consultations, because this was a multi-symptom disorder.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
After learning I had RSD, I went to the public library (the internet was not as available for research and gathering resources, as it is today).  I printed as much information as I could find, sharing it with my doctors and therapists. I then committed myself to raising awareness, by writing articles about my experiences living with RSD. Needless to say, I became a walking, talking RSD advocate. Learning to live with the illness became a full time job over the years. I had to prioritize, since the quality of my health is very important to me. A doctor said to me once “you will never stop searching“. It is still challenging to flow through the cycles of pain flares and loss of function that make/made an impact on my life. But, then again, I only have to choose to LIVE in the here and now.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
It’s been interesting, since RSD became an uninvited guest. I do have a good support system but that  (like all relationships) requires attention, time and effort. It’s challenging, and it varies, as I seek to engage myself as much as I can with others. I have learned to balance and accept my limitations. Also, self reliance is a tremendous factor; like with anything, it all starts with SELF. I refer to my support system as my hammock. It helps me swing through the cycles and, yet, stay still when needed. My hammock of support is critical to my well being.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
I have always had hope; that is what motivates me. Without hope, there is no faith. Over the last few years, I have become more dedicated to balancing my mind/body connection through guided imagery, meditation and yoga. I think it does help me to stay centered and grateful…as well as, learning to accept things at times for the way they are. Having a strong belief system in energetic patterns and behaviors has helped me to recognize my ability to be more intuitive with my own treatments. The nervous system puts off energy in a very confusing way when you have RSD, and learning more about my body’s responses helps to steer the
direction towards wellness.

HOW HAVE YOU RE-INVENTED YOURSELF?
Thinking outside the box has become a motto of mine. As I work towards raising awareness and advocating, there is a very fine line between living with RSD and letting it become the navigator. I prefer to choose my own path or journey. Each day it’s a new beginning, of sorts, as there are new opportunities and new goals to set always. I have learned to trust my own instincts about treatments and medicines, as I consult with my treatment team. Independence is something you spend most of your life seeking but, when you live with RSD, you learn to compromise and accept help, when needed. Learning and exploring what I am capable of every day is imperative so I can move towards better wellness, but RSD sometimes has a mind of its own and redirects me.
I believe in taking baby steps and staying more in the present.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
It helps me look at the world in which I live differently, appreciate what I have, and remain grateful. You learn to live in the present. It’s truly a gift because, at any moment, a pain flare can decide to settle in and change the way I feel and function. There is a strong desire inside me to acquire better wellness, although its frustrating, challenging, and even deceiving. I have learned to let go of the negative things, which do not serve a purpose, and focus in on the positive. For instance, the other day, my doctor mentioned to me that I am a hero, and I thought “why?”. His feeling is that patients living with severe illness like RSD have to deal with facing a major battle every day and we persevere the best we can. It’s all about survival and quality of life. I have been very fortunate to have compassionate doctors and therapists treat me for long periods of time but, like everything in life, there is always change. And now some of my treating team are no longer treating patients or have moved away. Therefore, I have had to seek out what is in my highest and best interest, as I remain open minded to new things. Learning to trust myself and keep a good hammock of support around me is imperative. It’s so important to be totally engaged and actively an advocate for my own health care. It’s probably one of the longest, most tedious, learning lessons in my life. I have learned to preserve my own energy and use it wisely, each and every day.

WHAT THINGS DO YOU MISS THE MOST?
Being very athletic and participating in a variety of activities has been a very long process to accept, and also recognize that there NOW are boundaries, set by my own body. The challenges have challenges, and simple things become more difficult. As the years have passed, I still try to regain strength and explore new options. My mind is helping to guide me into accepting what the body needs and wants. There are so many things to miss but I look forward to lower levels of pain and getting back more function. Those become more important than the what ifs??

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
That I have been so fortunate to receive a variety of treatments and therapies, most of which are not covered by insurance. But it is still not enough. There needs to be a greater understanding and integration of alternative treatments and main stream medical ones. I am extremely dedicated to understanding and learning about everything I do and every medicine or supplement I take. I am truly my own best advocate. As a human being suffering with a long-term chronic pain illness, I have had to overcome a lot. We need to provide better care and more attention to chronic pain & RSD. Our society is not tuned to the correct channel. More comprehensive healthcare is a critical concern. Medicines, supplements,  treatments, therapies, doctors, therapists...all play a part in treating each of us as unique human beings. Personalized health care is what is needed, as well, for RSD since it is a multi-symptom disorder requiring a very diverse health care regime. Health is truly the greatest wealth one can have. PLEASE ADVOCATE AND RAISE AWARENESS WHEN YOU CAN.

Wishing you wellness,
Tracy Block Zuckerman