Helping RSD Patients

Letters of Courage – A PLACE TO SHARE HOW U THINK RSD TREATMENT SHOULD CHANGE!

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COURAGEOUSLY, I ASK THAT RSD TREATMENT CHANGE IN THIS WAY – 

1) Establish a Patient Registry for anyone injured or hurt at a hospital to ensure that proper care and treatment is followed, and a patient can’t just be thrown out!

ADD YOUR OWN SUGGESTION IN THE COMMENTS BELOW – HOW SHOULD MEDICAL TREATMENT OF RSD CHANGE? HOW CAN PATIENTS DO A BETTER JOB WITH RSD? 

I have been sharing my experience with RSD since my diagnosis after an injury at a hospital in 2008. It took great courage for me to share my experience because I was so scared and I definitely didn’t want anyone to know I was sick lest I lose work as a filmmaker and photographer. If you look at the About and Archive Pages, you can find out more about my experience over these last three years.

What I have learned from my experience with RSD is that not only must I become empowered as a patient, but the Medical Field MUST CHANGE HOW THEY ARE TREATING RSD PATIENTS –

It will take COURAGE for Patients and Doctors to face the MESS that has been created with RSD, and to start to Change things.

Letters of Courage has been transformed into a PLATFORM for RSD PATIENTS TO SHARE BELOW IN THE COMMENTS OR  BY SENDING ME AN EMAIL AT MAYANMX@GMAIL.COM WITH SUGGESTIONS FOR THE WAYS YOU THINK RSD CARE MUST CHANGE!

A Dialogue. A dialogue that really has no place to go in the RSD Field – Doctors are often resentful of RSD if not RSD patients, many are simply UNSURE how to help and feel powerless, and Patients are no different, struggling with the pain, the loss of life experiences, and disability.

However, I believe, with COURAGE, and by sharing with each other, WE CAN MAKE A Better Experience for those who have RSD now or in the future, and there can be a better, more collaborative approach between medical field and patients.

What I know is that SOMETHING HAS TO CHANGE!

Letters of Courage is part of a larger advocacy and documentary project that seeks of inform, inspire and bring about this change for patients and the medical field.

Letters of Courage is now a space for the whole RSD community to be able to share their wishes, hopes, dreams, ‘if you could CHANGE one thing what would it be?’

It may take COURAGE for the doctors and care professionals to read this blog, and for Patients, COURAGE to share their experiences. Without COURAGE, things will not change so please help us CHANGE THINGS FOR THE BETTER! 

For example, yesterday, I read how Britain had come up with a new RSD System and how all the Doctors and Specialists had AGREED – HUH???? – DID ANY RSD PATIENTS AGREE? I mean, after all, just last month a woman in Britain had been shocked she was pregnant because she had been told by a DOCTOR that one could not get PREGNANT with RSD???!!! Yeah! She was shocked when she found out she was pregnant!

ITS IMPERATIVE that the RSD Medical Community STOP treating RSD Patients like Loons, and People with no volition or part in the process. PATIENTS AND MEDICAL PROFESSIONALS MUST COME TOGETHER TO REALLY BE ABLE TO GET TO THE ROOT OF RSD AND FIND A CURE.

I’m sorry, but being forced for 10 years, as some patients are, to travel to doctor to doctor, often being ignored, IS NOT APPROPRIATE, nor conducive to patient health. In some cases, delays can amount to a form of TORTURE.

SO, with no further ADO – or Complaining! – Please meet the NEW LETTERS OF COURAGE!  A place to share one’s experience as provider or patient so that with COURAGE, we may BEAT RSD TOGETHER!
I will get this party started!

COURAGEOUSLY, I ASK THAT RSD TREATMENT CHANGE IN THIS WAY – 

1) Establish a Patient Registry for anyone injured or hurt at a hospital to ensure that proper care and treatment is followed, and a patient can’t just be thrown out!

 

 

 

I will be posting more in the next coming weeks because, as you can imagine, the list is long!

Please, feel free to add your own in the weeks and months ahead.
Together, Patients and Doctors, we can BEAT RSD!

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