About

I was diagnosed with CPRS in my right arm in October 2008. I was injured from a blood draw at a local hospital. When the neurologist realized I had CPRS, she brought in the attending neurologist to ask whether CPRS could be caused from a needle injury to a nerve and he said, ‘it’s rare but it does happen.’  Rare is an understatement, everything about what happened to me was rare.

I was in total shock when the pain first started, I had never felt anything like it. I was immobilized immediately, and my life as I knew it, shifted forever. Unable to work, yet, having a family to support, I did not know what I was going to do. I am a freelance filmmaker and photographer, and I had always worked as an independent contractor. I did not have available any of the safety nets that could have caught us. Social Security Disability lagged (in the end, two years from when I first started experiencing pain and difficulty walking.)

A friend who had witnessed everything up to that point, she looked me square in the eyes and said, ‘your situation is going to take courage to get through. You are going to have to ask others for help.’ She asked me to write a letter, that she offered to send to friends, explaining what happened so that she could ask her friends’ for donations. She pointed out what I knew, I had no money, and there was quickly no money to even eat. A cousin, a friend, $20 here, $20 there is how we made it day by day.

It took me days before I could pick up the pen to write that letter. I termed it the Letter of Courage.

As the months passed, I realized that Courage was not needed just that once, but, courage is a constant requirement for people living with CPRS. It takes courage to face the pain, the shock and trauma that comes when your life is suddenly changed. It takes courage to live with a very rare and little understood condition that most doctors are unaware and very uneducated, particularly in regards to newer advances.

Letters of Courage began as posts on a former blog but over time, I started this Letters of Courage blog as a way to share and connect with others. As I begin my research and inquiry about CPRS – why does the medical field carry out a debate about CPRS on patients individually? And, why was it believed originally to be a mental health disease, and why does that characterization persist even after research shows clearly its not a mental health issue? Who gains from the controversy?

I am also seeking alternative care, and this blog is a way to document this journey. Unfortunately, treatment and care of a CPRS patient is expensive. I had a city offered health insurance for low-income residents (making below 40,000 a year). I had been so grateful for the health care and for five years, I went for all my check-ups, and each year, I was grateful to be healthy! So, I think it was a shock to my insurance to suddenly have a patient with extreme complex, and ultimately, with pain management and neurology, expensive treatment. I believe this is why my insurance never approved for me to see a CPRS specialist,  and why they denied every possible treatment except some drugs. As it became clear the hospital was not trying to suddenly deny the CPRS diagnosis, suddenly, in appointments, doctors were pointing out that I would get better, even though they didn’t know what I had, and kept offering drugs for nerve injury, and since I was ‘undiagnosed’ now, the insurance – which makes it decisions based on a diagnosis were free to reject treatment.

It suddenly became clear to me that I had to seek out something different. After all, little is known about CPRS, so I figured, why not try alternatives? CPRS is not like other conditions where there is a fix. I have always felt comfortable with western medicine, but, suddenly, I was having an experience with the medical world I had never known. It has been a shock to have the patient-doctor trust broken time and again to protect the hospital from liability.

So, Letters of Courage became a place for me to be able to share my experience, explore all these themes, and share discoveries, information and education from my research with others in a similar position.

Thank you for visiting!


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