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!
Its been several months. My attention turned towards uncovering and finding out what happened over these last few years, new information that came to light that 1) helped put things in perspective, and, 2) propelled me to advocate for change so what happened to me is different for anyone else injured at a hospital or by a doctor.
I was stunned by what I learned, but, it started to all make a lot of sense. Interviews with disability advocates surprised me in learning that many of the organizations I came in contact have ‘reputations’ and point to serious system wide problem. The problem is, we aren’t talking about defective lightbulbs. We are talking about actions that can cause life-altering disability.
The level of business intelligence, and the use of the doctor appointments to ‘gather information’ rather than help takes ones breath away.
I had to balance my general advocacy with seeking accountability and remedy for what happened in my particular case now that the facts were laid bare. As someone recently said, ‘that’s illegal!’
When the health care system is so rigged, is it any wonder there is so much illness despite the amounts spent on health care?
What the review of all the documentation showed was that while I was experiencing high, untreated pain, there was evidence and knowledge very early on in the process about the damage that had been done and that was spreading.
I had been so stupid to trust. There was no way that hospital was going to suffer any consequence, so that has meant that as the city and state agencies found my care ‘too expensive’ – I have been left to deal with treatments I can’t afford, doctors who refuse to treat me for fear of the hospital, and, without any city, state social or legal support, must ‘overcome.’
Another advocate said only the other day, more people have been hurt and disposed. It’s rather sickening from my viewpoint.
Even attempts to return back to work – paid work – have met with denial after denial by DOR.
I literally cried in the hearing. What do these people want?
To crush me because I am evidence of their liability?
Their wrath knows no bounds.
We now know that they never reported the information to the state or city agencies, which must explain why the agencies decided to say – against the medical documentation I had to fight to even be able to get the MRI’s – that I was no longer disabled (now they are doctors?) or over income or whatever little legal manuevers, despite the law, despite the facts, to make life more miserable for those who had the audacity to walk into a hospital for care and be injured.
I owe a lot thanks to many incredible supporters who have helped me deal with the realization that not only was I hurt at a hospital, but, their reach is so far, they can make my life a living hell.
I owe gratitude for those who have stepped forward to help me transform a difficult experience into a chance for growth, empowerment, and, well, learning more than I ever knew or could have imagined about sooo much! I will be sharing more about that over the next while…
For today, I want to share a few quick thoughts/tips:
A. New RSD Tip of the Day! Much of what I have learned to do to manage the RSD symptoms has come from experiment – today, I want to share an exercise that combines sound healing, touch sensitivity, and, developing the brain to limbs connection.
I have an anklet bracelet that I came across. I looked at it, and thought, ‘oh yeah, in days past!’ One day, after my exercises, feeling pretty good that day, I put the anklet on. I found — for the time I could stand having the anklet on — that I looooved hearing the beautiful music and that the music came from my arm or leg.
I liked that the music was a new, very positive way to be in connection with my right leg, and eventually, my right arm.
I liked the notion of these painful regions transformed into music machines!
As I mention, some days, forget it. Like today, I am having muscle spams in my arm that are quite insistent and repetitive. Yet, these are days when I forgo my routine, when symptoms are more debilitating.
I find my appreciation for those good days – and sounds – only increases on those days I can make a little music!
I wonder how you will feel??
Hummingbird – Sweet Nectar, Sweet Medicine
I have written before about the connection to Hummingbird, and the ancient importance of the Hummingbird to the Native people of the Bay Area.
When we speak of ‘medicine’ – this term can be confusing. Today, ‘medicine’ is most often imagined as a prescribed cure.
Complementary and Alternative Medicine covers many of the Native healing traditions and practices, and is seen as…well, as the tile implies, complementary to Western medicine traditions. No door to healing is closed.
The National Institute of Health offers a healthy start to better understanding Native People’s concepts of health and wellness. Visit their site to watch videos and hear about the Healing Pole that now graces the National Library of Medicine!
Our community was graced with a Healing Pole, and its inspired great discussions on health and wellness.
I have tried very hard to advocate for greater cultural competence here in the Bay Area, especially at the teaching and university hospitals in this region with the third largest urban Native population in the United States.
My own experience led me to advocate for these changes.
EFT TAPPING – LOUISE HAY
I have written before about my experience with EFT, often called ‘tapping.’
Its an interesting therapy that works with the acupuncture points to help relieve emotional blocks that can cause physical ailments.
I like this therapy for a variety of reasons, and for RSDr’s, I think the option of a ‘soft’ vs. acupuncture by needle is very helpful, bringing many of the benefits without the physical pain many patients comment about after acupuncture.
I have also spoken about the impact that Louise Hay’s mediation had in my life, something I listened to and still listen most days.
I was so inspired when I saw a recent video with Louise, learning the tapping technique. She was such a down to earth person, sharing the challenges she faced, and, inspiring with her achievements in personal and professional growth.
Nick Ortner and Louise Hay invited people to share how EFT played a role in their lives by writing in – and well, I submitted my story!
Interestingly, members of my community have begun working with returning veterans as part of a collaborative project to incorporate Complementary and Alternative treatment for PTSD.
Recently, I read that EFT is also being used to help veterans in a pilot project designed to measure and assess its effectiveness as a therapy before broader implementation.
Its believed that we use less than 1% of our brain capacity – still. I wonder, what new advances will we learn about the brain’s capacity to engage in the healing process?
When we look for a positive side to this experience, for me, I’ve been empowered by the healing process, and, by seeing most intimately our medical system, empowered to voice my experience, to heal, to help other people who experience a similar trajectory of care, and, to bring attention to the general need for greater collaboration between patients, doctors and researchers.