It has been some time since I have written.
I fought for so long to try to get appropriate medical care, and the social services that I need as a result of being disabled by VRSD.
I gave up. I stopped trying. I didn’t have the fight to fight them and stay alive.
I had to choose my ‘aliveness’ – which – during the second half of the month, when there is no food or medicine – I wonder what that means in a society that allows a hospital to hurt a patient, dump them from care, accuse them, and abuse someone with the highest known pain levels on the McGill Pain scale.
In October 2014, I was invited to give a talk about my artwork. Sitting in the audience, with a shirt with UCSF logo imprinted, sat a man who took notes before leaving as I finished. Can you imagine what it feels like to be followed by UCSF?
Because I walked into their ER. Because I was injured. Because I developed VRSD. Because I am smart and knew something was really wrong about how I was being treated and seeing others with RSD being treated the same.
This nightmare never ends – how this hospital can get away with what it does.
When I first started writing about what happened to me – beginning in December 2008 – I was stumped as to what was happening to me and why I was not getting medical care. It was too late once I realized what had been done to me, and it would be 2012 before I even had the MRIs showing very logical reasons for the pain I experienced. UCSF’s feigning they did not know was just the beginning, as we’d learn in 2012 that UCSF knew about the spine damage in 2009.
These are tough questions for an adult.
What about for a child?
Over a year ago, I learned of a young girl who had gotten VRSD from a shot. Like what I experienced, her mother had the fight of her life. In their case, the state they lived in had zero – 0 – doctors who know about RSD, let alone VRSD.
Venipuncture Reflex Sympathetic Dystrophy results from a blood draw or vaccination or other venipuncture that causes nerve damage that leads to RSD.
Venipuncture RSD cases in Japan
A rash of VRSD cases arose in Japan in 2012, resulting from the HPV vaccination. So many people experienced the VRSD, a case went all the way to the Japanese Supreme Court, which ruled cases of liability could move forward.
Lack of Support for VRSD Patients in U.S.
I tried so hard and in so many ways to move my life forward after this RSD. Its been a cruel result that I am excluded now from IHSS services, and other support services that might ease the financial situation that is every month without being able to work.
I have set up a paypal account on the advice of fellow RSD supporters who ask how they can help. Donations are very appreciated and go directly towards basic necessities beyond what is left after rent from my SSDI. Which is $75.
I continue to try to get PASS support from SSDI for the time I used SSDI funds to pay expenses related to making money but I did give up on trying to go back to school since DOR was unwilling to pay the difference with the scholarship I received and refused me to find a different school.
I am working hard to be a positive force of support in the RSD community and I have developed new art project for RSD Awareness which I am launching November 03, 2014. I’ll write more about that art project in my next post.
For now – will you take the ‘Light the Flame’ Challenge? For the month of November, please light a Solidarity Candle and #LightaFlameforRSDAwareness or #LightAFlame and post to social media. If you can spare to make a donation to any individual RSDr – your contribution will make a very important difference during the holiday.
Or donate to an art project like the one I will describe in the next post – one of many RSD projects by people like me trying to raise awareness of RSD.
Or contribute to your favorite RSD charity.
Either way, post your pledge and solidarity with the hastag #LightAFlame or #LightaFlameforRSDAwareness!