RSD Interview #9 - With Jennifer Ginsburg

HOW AND WHEN DID YOU GET RSD?

I got my RSD in May 1994. I had surgery to my knee about 4 years prior and I re-injured it. My orthopedic surgeon told me to go to 6 weeks of physical therapy and that I was a possible surgical candidate again. Physical Therapy was in my gym and my mom had just finished getting PT done for her, so they knew me well in there. During my 1st visit, they were icing my leg and it didn’t feel right. I told the therapist that I thought I was getting frost bite and he said “Shut up, Jen, you’re fine. The ice packs have not been on very long”. I ended up leaving with a giant red patch on the back of my calf and lost feeling in my toes that evening. The next morning I was admitted into the hospital and was diagnosed immediately.

I met with Dr. Schwartzman this past summer. He felt that it wasn’t frost bite that I experienced. Instead he felt that the episode at PT was actually cold Allodynia.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?

Since I was diagnosed so early, my RSD was always easily treated with Lumbar Sympathetic Nerve Blocks. Unfortunately, I spread to full body starting in 2009. My life has been completely turned around since. I can no longer work and have relocated to be closer to my family. Every area of your life is really touched by this disease and there isn’t really any time that you’re not making a decision because of it.

DO YOU HAVE A GOOD SUPPORT SYSTEM?

I do have a good support system. My friends and family are always there for me. I have become very close to others with RSD and/or their family members and they, for the most part, provide the best support. Nobody can really conceptualize the gravity of this disease unless they directly feel the pain or see it on a daily basis.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?

I am spiritual but not religious. I don’t normally think faith plays a part in my illness. However, when I’m sitting here and actually attempting to associate it, it can be done. I do believe that no matter how much pain you’re in…tomorrow is always a new day and fresh start.

HOW HAVE YOU RE-INVENTED YOURSELF?

I think we’re always reinventing ourselves. I believe that is how we grow and evolve. I’m a completely different person than I was a few years ago. My career was always everything to me and now it’s a distant memory. I always defined myself as a career-woman and it’s taking a lot of soul searching to figure out how to define myself now. It’s a transformation-in-progress and I think it always will be. Just when you think you’ve got everything figured out with this disease, you’re faced with something else to adjust to, adapt to or figure out.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

Yes. I’ve learned to appreciate what is truly important in life. I’m a bigger believer in being present in every moment and that time spent is more important than anything money can buy. I’m much more patient and understanding. For the first time in my adult life, I’m actually learning that I need help sometimes which is enormous for me since I was always so fiercely independent. I’ve also become more compassionate.

WHAT THINGS DO YOU MISS THE MOST?

I try not to think about what I miss the most. I try to reflect on the positives more than the negatives. It keeps my head in a healthy place. That being said, I miss my independence. It gets frustrating not being able to do basic tasks that used to be so easy.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?

I think others could benefit by realizing that we may look fine but we really are not. If you look at me and don’t see anything wrong, it’s because you don’t know what to look for. I may appear fine when you see me for lunch but what you’re not seeing is how long it takes for me to recover from it.

I also don’t think that people understand how many things are affected by this disease. It’s not just that I’m in indescribable pain. My breathing, heart rate, blood pressure, stomach, bladder, hearing, eyesight and countless other things are affected, too.