I wanted to share with you Brené Brown’s TEDX Talk: The power of vulnerability.
It feels like a good thing to share right now. The month of November – VRSD awareness month – came to a close, I found myself surprised to be facing such a different experience than I had hoped for this month.
It is very hard to have the will, and no way, to make the changes I’d like to make in my life. I barely made rent last month, thanks to the help of others. Its been months that I had been running on empty fumes. No food stamps. I have to ensure my son can eat. I get behind.
Its been six months since I’ve had the money to purchase a battery charger for my photo camera. I can’t photograph the new art project I started last month.
How to deal with limitations – physical and financial
I had hoped to start selling the new pieces in time for Christmas and the holidays. I am also without the hard drive space to upload photos even if I had the battery.
Its so very difficult to be stuck with no options. If I can’t work, I can’t make money. If I don’t have money, I can’t buy supplies to make the things I can sell.
It is not easy to face the physical limitations.The physical limitations lead to financial limitations. I am grateful to the many people who have helped me over the last six years.
It is very hard to be so vulnerable.
Its one reason that Brené Brown’s talk stood out for me in the mass onslaught of content when entering the information highway.
‘The original definition of ‘courage’ when it first came into the English language – being from the Latin word ‘cour’ meaning heart – the original definition was to tell who you are with your whole heart.’ Brené Brown: The power of vulnerability.
Surely, anyone who follows this blog – Letters of Courage – understands why I felt most drawn to this part of Brown’s talk.
In the six years that I have written here on this blog, I have tried from the start to face my vulnerability.
My good friend who had been helping me and knew and saw what was happening to me at UCSF, the injury, and afterwards, being denied care in those first months when the disability could have been prevented. I was encouraged me to write about my experience.
Letters of Courage was born.
I was diagnosed with VRSD from the very start so – unlike many people with RSD who must visit so many doctors to find one that might possibly know of RSD – I was told I was facing a serious matter after I was diagnosed. UCSF – at that time – was considered a specialty center for RSD.
Its no longer considered that due to the number of people who have faced difficulties with treatment there – it turns out, UCSF doesn’t really believe in RSD, but pressure from the support groups has supposedly led UCSF to try some new approaches.
Of course, they’ve never reached out to me – not to apologize, not to offer treatment, not to restore what they took by delaying treatment for RSD which could have prevented the very aggressive VRSD, and different from regular RSD for its very quick and debilitating impact and progression.
When I think back to laying there in bed, in so much pain, nerve spasms racking my body and spine, that UCSF let me lay there knowing full well what had happened to me and what treatment I would need, I find myself crying uncontrollably. Only later would I learn UCSF knew of the spine damage and knew VRSD was extremely aggressive.
When my friend suggested I write about what was happening to me, I felt heartbroken to contemplate writing about a medical condition – not just the condition, but that I got it, and got it while having blood drawn – instead of the ten-part PBS series I was interviewing and had trained my whole life to have the privilege to do on a professional, large production.
To do this writing of Letters of Courage, to document my personal details and share them with state and federal representatives, and to share socially that not only had I been injured, but I had been had by a medical and legal system, and, had to admit the vulnerable financial position I had been as the October 03, 2008 financial crisis hit the world on the same night I was injured in the ER at UCSF.
‘Quite simply, these people had the courage to be imperfect,’
from Brené Brown: The power of vulnerability
Connection with Others – ‘Whole-hearted’ people
In studying vulnerability, Brown identified people who faced their imperfect situation and authentic selves with courage as being ‘whole-hearted.’ Interestingly to Brown, the very well from which human connection sprung was precisely being in one’s most authentic self.
One of the most important changes that came out after my advocacy efforts were the online support groups for RSD.
Started in 2010, and really taking off through 2011/12/13 – online support groups gave people with RSD a chance to be vulnerable with each other about what we were experiencing and going through.
Newly diagnosed and long-term survivors with RSD were connecting in an online forum, and sharing experiences, information and research developments.
We were also starting to notice similarities in the way RSD patients were treated, how many were being denied care, and, especially, similarities in symptoms.
Vulnerability is necessary
What Brown’s research also showed was that vulnerability – and learning how to embrace vulnerability was key to living a healthy and positive life – and to avoid joining what Brown describes as the most heavily indebted, heavily medicated and overstuffed cohort of American adults in history. To avoid numbing and difficult challenges, people have to face their vulnerability and express their authentic beings.
‘These people fully embraced their vulnerability. They believed that what made them vulnerability made them beautiful. They didn’t talk about vulnerability being comfortable, nor did they really talk about it being excruciating, as I had heard earlier in the shame interviewing. They just talked about it being necessary.’
Let ourselves be seen
‘Let ourselves be seen’ is another one of the positive ways of facing traumas and imperfect situations.
Sharing our stories can help others with RSD and increase awareness in the medical community.
During RSD Awareness Month, there was an outpouring of RSD awareness projects, expressed in a diversity of actions – from awareness bracelets, t-shirts, memes for social media – it was so inspiring!
RSDr’s are sharing their experiences and joining together to change how RSD is diagnosed and treated – especially in the United States where – from the support groups we have been able to gather common experiences and symptoms to advance the understanding of RSD where so many in the medical field dismissed out of ignorance patients and sadly, learning as much as they can from patients – insurance and money dictate policy bypassing real advances in the more than 150 years that RSD has been around.
One of the reasons that I made myself vulnerable in sharing my story here in Letters of Courage – and with state and federal officials – as well as the City of San Francisco and its Civil Right Division – was so that I could get help for the injury caused by the botched blood draw at UCSF and for the delayed and denied treatment that lead to this life-long condition that has devastated my physical mobility, and requires long-financial support for living and treatment.
‘How to move beyond?’
One of the most painful aspects of my particular case is that I was left with a disability and limited ability to work professionally, and no recourse against UCSF. I tried every possible avenue to get help defending myself and even now, accepting that I am without any legal help, trying to access IHSS, food stamps and other social services like Department of Rehabilitation or the PASS programs, all of which have been denied to me.
So, every month, after spending for rent, I relive the trauma over and over when facing stark finances, and no physical ability – despite my young age – to change my financial situation each month.
My mind is sharp, but I have a serious nerve injury in my right arm, with neuropathy traveling up and down, from head to toe.
I went to a psychologist for help right away in December 2008, because I was so scared as I lost my ability to walk so quickly, and the hospital had transferred and delayed my neurology appointment five months despite the ongoing acute situation.
My psychologist worked with me for months on developing alternative methods for handling the stress and anxiety that the disability had provoked, presenting new challenges I had never encountered.
It was he who called the UCSF Neurology department demanding to know why after six months of seeing me, there was no care forthcoming and I was being denied the treatment and care he had read about in the book on RSD.
UCSF never called back. We were to learn, they were about to do nothing. Except, gather intelligence on me to defend themselves.
Calworks told me two years ago when we were cut off from social services that I had ‘been on long enough.’
When I tried in August 2014 to restore benefits and IHSS help, I provide the judge and Calworks with the following information – from the attorney who represented a man in Georgia who had the same thing happen to him as happened to me – with the male nurse drawing the blood even after he damaged my nerve – but, this fellow VRSDr had good legal representation and he now has the financial resources to obtain treatment and meet his family’s living expenses every month.
Me – on the other hand – denied legal representation and medical care – must face every single month not having enough money for food and medicine – let alone anything for my son and his needs for school and in his life.
In case this is useful to others in my situation, here is some guidance for Calworks and Judges and other agencies that encounter people like with me venipuncture RSD.
The agencies need to be prepared that if hospitals like UCSF are never held accountable for malpractice injuries and disabling a person who supports their family and for denying medical treatment in crucial months to prevent disability, the client might need social services and benefits for life – and not because the person has done anything wrong or is gaming the system.
When institutions like UCSF get away with this type of discrimination, people suffer.
RSD Is Real: How to Help the Adjuster, Judge and Jury Understand
The purpose of this article is to offer an overview to lawyers of some of the key issues involved in obtaining significant settlements and verdicts on behalf of clients suffering from Reflex Sympathetic Dystrophy (RSD). Helping adjusters, judges and juries understand our client’s injury presents several unique challenges that, if not overcome, can leave our clients without significant recovery and, therefore, without necessary medical care. My hope is that this article can offer lawyers who are currently representing clients suffering from RSD the benefit of some of what we have learned from several years of RSD settlements and trials.
Some background on RSD
RSD is a debilitating and life-changing condition. It is a chronic pain syndrome wherein a traumatic injury and the sympathetic nervous system combine to create an excruciating cycle of pain. RSD was first recognized in 1872 by a doctor treating soldiers from the Civil War. The soldiers had bullet wounds or bayonet injuries that would heal completely, but the patients would continue to report excruciating pain. They would often show signs of swelling, discoloration, and temperature or skin changes. He called the syndrome “Causalgia.” Doctors have refined the nomenclature to refer to the disorder as Reflex Sympathetic Dystrophy (RSD) or the more modern label of Complex Regional Pain Syndrome (CRPS). I continue to use “RSD” to refer to the disorder, as clients and jurors prefer it.
RSD begins with a traumatic injury. The injury can be severe or mild. In fact, the initial injury is often a minor trauma. Our firm has represented clients whose RSD began with injuries ranging from fractures, crush injuries and burns to bruises and needle-sticks. The medical literature includes cases of RSD resulting from sprains and even bee stings. How that initial traumatic injury develops into RSD is largely a mystery to doctors. For most people who suffer a traumatic injury, the injury eventually heals. But for roughly 1 out of 1,000 people the injury triggers the sympathetic nervous system and sets off a pain “loop” where the pain signal travels from the initial injury site, through the nervous system, then back to the site – keeping the initial injury and the pain response constantly agitated and inflamed.
RSD patients describe their pain as a “burning” pain that can rise and fall throughout the day. In fact, the burning characteristic of the pain is the hallmark of RSD. Throughout the day the RSD pain can remain around a “2” or “3” on the pain scale. However, when the pain “spikes” (because something touches the injury, or the sympathetic nervous system is triggered by stress, anxiety, temperature change or activity) the pain can be excruciating. Men compare RSD spikes to the pain of a kidney stone. Women compare it to the pain of childbirth.
How doctors make the RSD diagnosis
RSD is a classic diagnosis of exclusion. This means that doctors must “rule out” more common causes for the symptoms they are seeing with a patient who has RSD. Because RSD always begins with trauma, the doctor making the earliest diagnosis of RSD is often an orthopedist, neurologist, or even a general practice doctor treating a patient for a traumatic injury.
Many patients follow a similar treatment pattern:
1. Traumatic injury;
2. Injury “heals” but patient continues to complain of severe (usually “burning”) pain;
3. Patient is noted to be “hypersensitive” in the area of the initial injury and may “guard” the injured limb;
4. Doctor questions why patient is still complaining of pain (considers “somatoform”);
5. Patient may show objective signs of RSD including extreme sensitivity to touch, swelling, excessive sweating, tissue discoloration, skin and nail changes, temperature differences between the RSD limb and the uninjured limb;
6. Doctor refers patient for a “rule-out” of RSD;
7. Eventually the patient is referred to a “specialist” (usually an anesthesiologist/ pain management doctor or doctor of physical medicine and rehabilitation).
This time-line can take patients months and often more than a year from the initial injury date to RSD diagnosis.
Capture the criteria
Even after the client has been diagnosed with RSD, explaining RSD to a jury and helping them understand that RSD is “real” can be challenging. The lawyer must make the disorder and the diagnosis simple for the jury to accept. We have found that the first way to do this is to identify a single diagnostic criteria and embrace it with every witness. There are several versions of the diagnostic criteria repeated throughout the medical literature describing RSD, but the most widely used criteria for diagnosing RSD are those promulgated by the International Association for the Study of Pain (IASP). (A more recent revision of the IASP criteria is referred to as the “Budapest Criteria.”) There are two types of RSD under the IASP Guidelines. Type I does not involve an identifiable injury to a nerve. Type II does.
Whether your expert and treating doctor feel more comfortable with the IASP or the Budapest criteria does not matter. They both adequately represent the state of the art in diagnosing RSD. However, you must chose a criteria and stay with it. Put another way: it is hard enough for an adjuster or a jury to understand RSD without forcing them to deal with multiple criteria for diagnosing it.
Prove it (over and over)
Jurors, already skeptical of lawsuits (and people who bring them), are understandably skeptical about RSD. The signs of RSD are often invisible, and it can be hard to understand how an injury so “small” (cut, burn, needle-stick) could cause an injury so “big.” I start cases on behalf of RSD clients with a healthy respect for juror’s skepticism and decided long ago that I would err on the side of “over-proving” the injury. I use three primary tools to prove a client’s RSD to a jury: photographs, a checklist, and confirmatory medical testing.
Many patients with RSD will have objective symptoms a jury can see. The challenge is that a client’s RSD symptoms (edema, red and shiny skin, or purplish skin – even sweating) come and go. We keep an evidence photographer on retainer to capture the physical symptoms whenever they present.
Doctors diagnose RSD based on a combination of symptoms. It is important to demonstrate each symptom to the jury in a way they can remember. We comb the medical records and interview friends and family members for witnesses who have seen the objective symptoms of RSD. We then create a checklist that identifies when each of the IASP criteria have been met. Presenting a checklist educates the jury that all the symptoms do not appear at the same time but will appear on different days and thus be seen by different people. The checklist is also an important visual tool to show the jury that RSD is a real, diagnosable condition.
Confirmatory TestingThroughout the years, physicians have attempted to use nerve blocks (stellate ganglion blocks or phentolamine injections), x-ray imaging (three-phase bone scans) and even NCV testing to confirm a diagnosis of RSD. Each of these methods produces high percentages of false negatives. The current state of the art in confirmatory testing is Isolated Cold Stress Testing (ICST) with laser thermography. This is, essentially, a sophisticated time-lapse imaging test that compares blood circulation in the RSD limb with the non-RSD limb under temperature “stress.” The testing generates a color thermograph image that allows the jury to “see” the changes in the RSD limb. Only a few hospitals in the country are able to do this testing, but it is powerful scientific and visual evidence.
Expert, treating doctor and life care planner (the three-legged stool)
For the clients whose RSD is permanent, I routinely see life care plans that include electrical implants (spinal cord stimulators, peripheral stimulators, intrathecal pumps), prescription medications, and “off-label” medications (Ketamine). These life care plans can often total several millions of dollars in future medical care and interventions. In order to recover the full value of the life care plan, it is critical that the treating doctor, the expert and the life care planner agree on the treatment contained in the plan. Our firm retains out-of-state experts and life care planners who often have 20-30 years experience with RSD patients. However, I have seen instances where well-meaning treating doctors can undercut a life care plan by millions of dollars simply because they are unfamiliar with the current state-of-the-art possibilities in RSD treatment. Therefore, it is imperative that your client do their own research and identify a doctor in their region who treats a large number of RSD patients, attends the national seminars, and is aware of these state- of-the-art RSD treatments.
Pitfalls (defense IME’s, defense experts and defense surveillance of your client)
Defense lawyers routinely rely on “expert” doctors who rely on outdated or improper criteria to rebut the diagnosis of RSD in your client’s case. I have seen several “experts” point to the AMA Guidelines (4th or 5th Edition) criteria for RSD that contain much more stringent “criteria” than the IASP or Budapest Criteria. This approach can be easily debunked. The AMA Guidelines contain several indications within the text that warn physicians against using the guidelines as a diagnostic tool. Another approach I have seen is an “expert” in an IME rejecting an RSD diagnosis because they did not observe all of the symptoms of RSD during their (often abbreviated) examination. Of course, no RSD patient will show the full range of symptoms on any given exam date. Finally, since the symptoms of RSD can come and go, the client will have “good” days and “bad” days. It is not uncommon for the RSD client on a “good” day to be able to grocery shop, drive a car or carry groceries with their affected limb. The Defense will often conduct secret surveillance of your client in order to show video of them shopping, driving their car, or picking up an object. We deal with this issue head-on. We educate the jury about “good” days with RSD, and our client always is given a chance to talk to the jury about what they can do on their “good” days.
In shortRSD is very scary for clients. It can be hard to understand for an adjuster or a juror. The fear of how to prove RSD can be scary for lawyers. However, RSD is very real, and our clients need our help. Our firm has learned that we can achieve multi-million dollar settlements and verdicts on behalf of clients with RSD when we do the work to educate the adjuster or juror on how “real” this disorder is. It takes painstaking work, and we must avoid the many pitfalls the Defense can create for us, but our clients deserve it.
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.
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!
The last six months have been very tough. Apart from the loss of the housing subsidy, even more cuts have fallen on our family. I no longer have money for medicine, often, short on food, and forget any extras. Everything has gone to rent just to ensure I won’t be on the street again, with no physical strength even to walk.
At the same time, the discouraging experience at Stanford only grew more so:
1) After returning to my GP in October after Stanford refused to do anything at all, I begged and cried for an MRI – what Stanford would later characterize as my “demanding medically unnecessary testing.”
Well, over the next 3 months (yes, 3 months since my GP refused to order all the MRI’s at the same time) the MRI’s of my spine, neck and finally, yes, finally, ONE MRI of my ankle/foot – of course, I was denied an MRI of my entire right leg (now that would just be too much!) – REVEALED MANY SURPRISES.
While UCSF and Stanford claimed I had ‘mental health problems’ or ‘fibromyalgia’ – yes, you guessed it, with absolutely NO testing to back their claims – this is what they missed while they did nothing for the last 9 months – before throwing me out of care just like Stanford PM threatened – as they claimed because I had ‘demanded medically unnecessary testing’
A) Significant damage in my Spine that requires Orthopedic Surgery.
B) A ganglion nerve cyst in my right ankle,
and, drum rolllllll
C) the chronic tear that appears on the top of my right foot – right where I pointed to every single time, and completely ignored for over 3 years! (Yes, the same three-year time limit for a Medical Malpractice suit against UCSF for the Venipuncture Wound).
So, as Stanford and UCSF were padding my file with fake Pain Management appointments, and failing to conduct ANY tests at all, they were also trying to build a picture of the ‘savage, angry, violent’ Indian to fit their narrative of why they did not do their jobs, nor, conduct any of the necessary further testing to ‘eliminate’ anything else.
No testing of anything, nada, zilch.
So, by last October when Stanford sent me on my way, the three years expired during which from the time of the nerve injury from the blood draw, complaining that I was ANGRY, they failed to conduct any testing nor find the damage described above.
What was worse was that:
1) After the MRI revealing the ‘extensive’ damage to my spine as my GP mentioned, we both – she and I – called Stanford PM to follow-up and get an assessment of the spine damage. We called over and over and over. No reply, no response.
I called Medicare to ask why I was not getting appropriate treatment and response. Stanford’s Patient Advocate contacted my GP’s office staff to ask about their experience and when they described the numerous lost faxed documents, appointment and MRI requests and failure to call us back, all they got from Stanford was ‘sorry.’
What did I get? I got a letter stating that ‘my behavior’ and ‘demands for medically unnecessary’ testing was the reason Stanford, after 9 months of NOT even seeing me, testing or doing a thing, said they were no LONGER going to see me as a patient.
When the Patient Advocate said Stanford PM would send a report my GP, I laughed. Was she joking? What were they going to report?
From August 2011 to June 2012, I was seen a total of 7 hours between Stanford PM and Neurology.
Stanford Neurology said there was nothing more they could do – mind you, they had done NOTHING, not even an MRI despite the visible continued shaking of the arm and the PM diagnosis of the VRSD/CPRS II – I later found out, Stanford Neurology had ordered an MRI in August 2011, but the MRI was ordered and cancelled with no one telling me at all.
The way I found out? When I called for my follow-up appointment with Stanford Neurology, the receptionist told me. Medi-cal has now confirmed the MRI request was submitted and rejected. I had never been told. NEVER.
I have submitted a letter to Stanford asking that hereon forward, STANFORD SHOULD REFRAIN FROM REPORTING a THING about my health.
2) When I went in to get the results of right foot and ankle MRI – mind you, this being the MRI that I was ABSOLUTELY unable to get any UCSF or Stanford doctor for 3 years- despite the mobility disability and EXTREME PAIN, the Foot/Ankle doctor’s receptionist smiled when she saw me – ‘you are going to be very happy!’
I knew then that they had found in the MRI the cause of the pain and walking difficulties. Maybe now he’d order a whole MRI of my leg in those spots that I told him hurt so much.
I knew the MRI showed the damage I had pointed to these three years.
Yet, instead, the doctor didn’t mention the chronic tear or cyst found by the MRI.
No, not at all. Not one peep. This from a doctor who continues month after month to damage my credit by showing a pending amount for doctor services not even provided!
No, the only way we learned about this information on my foot and ankle was thanks to a dear friend who drove all the way out to the laboratory herself, and got the films and report.
When I read the report, I literally SOBBED!
3.5 DAMN YEARS! All the times I had been told they just ‘didn’t know what I had!’ After all kinds of nasty notations about me:
a) Mental Health Problems: yet, no testing, referrals nor even talking to me about any mental health problems. Rather, these ‘mental health’ problems were reported to SSDI, and included in my File.
Instead of asking why I was angry after so long of not being listened to or treated, Stanford threatened to cut off medical access because I had tried in vain to have Stanford find my medical files which they said they had ‘lost’ – Like the lost faxed appointment and MRI requests, Stanford had also supposedly ‘lost’ my medical records.
This was all quite RICH given that I never got any access to those shiny machines and stellar medical knowledge. Instead, myself and my doctor were treated to rude and snickering receptionists who said over and over and over how someone would call me back and never did, or would call the Doctor’s office and never did.
b) Fibromyalgia was something since UCSF even that the doctors kept suggesting, yet, there was ABSOLUTELY no testing of any sort to confirm nor corroborate this claim. In fact, Stanford and UCSF physicians kept INSISTING that I had pain on both sides of my body – which fit the FIBRO criteria – but was simply NOT TRUE!
In the last appointment with Stanford PM, I insisted in front of two witnesses that they stop, STOP insisting I had pain and symptoms on both sides of my body when it wasn’t true. UCSF had done the same thing.
But, I was also SHOCKED and HORRIFIED why this foot and ankle doctor, who I had trusted and was a colleague of my GP, would simply LIE, and HIDE medical facts from me.
Since I didn’t know he had hidden the facts during our appointment, today, I called to ask that the Dr. call me and provide a complete analysis of the MRI results.
His receptionist was quite surprised to hear the DR. had never given me the results of the MRI.
No, in my appointment with the foot/ankle doctor, he instead suggested maybe I had a ‘pinched nerve’ or perhaps it was CPRS and there was ‘nothing more we can do for you.’
When I asked why it had taken so long to get the test, the Dr. replied that ‘some people think it’s easier to get benefits…’
I was stunned – this man was suggesting that their failures as doctors and institutions pointed to me wanting BENEFITS! Are Doctors and Hospitals now the GateKeepers for Public Benefits?
And, if so, how makes up for their mistaken beliefs that ensure that the patient in fact DOESN’T GET FAIR AND EQUAL ACCESS TO BENEFITS DESIGNED FOR CPRS AND DISABLED PATIENTS? WHO PAYS WHEN THEY MAKE A MISTAKE IN JUDGEMENT?
I told the foot/ankle doctor that he didn’t know me – knew nothing about me or the job I was up for at the time of my injury – who I was as an individual, how hard I had worked my entire life, how excited I was about MY LIFE and OPPORTUNITIES, and WHY WOULD HE THINK THAT ABOUT ME? DID HE KNOW I WAS A FULBRIGHT SCHOLAR, GRADUATED TOP 30% OF MY LAW SCHOOL CLASS?
WHAT MADE HIM THINK I’D WANT TO BE ON BENEFITS RATHER THAN LIVE MY DREAM?
I was just stunned.
Well, that was not to be the end of my day.
No, next was a visit with my GP who I had seen for over a year. She had been the one who ordered the first MRI after 3 years, and found the significant damage in the spine. She had referred me to the foot and ankle doctor.
What I was to experience next was simply stunning.
I had asked for a longer appointment because I had been having continuing problems with my vision, and in fact, during a recent exam with the eye doctor, when the light went into very edge of my right eye, I nearly threw up and passed out. I was also starting to have some new dystonia and other ‘freezing’ in my arm.
Not having money for medication has meant that my symptoms have begun to dominate my life again, impacting my sleep, ability to eat, and to manage the pain. In the process of the medication moving further out of my system with no replacement, I noticed the numbness in my right hand and arm, and I wanted to talk about the swelling and extreme pain in right leg.
I now wanted an MRI of my right arm.
With the MRI’s we had done already, we were starting to pinpoint the physical issues that were present in my body, and I wanted to have my right arm examined in this way too, to reveal if there was continuing nerve damage.
I asked if we could do an MRI of my right arm.
This doctor who had treated me for over a year suddenly looked at me and said ‘Catherine, what more can I do? I’ve sent you to 4 neurologists – UCSF, Stanford and two in the city – and YOU DIDN’T WANT TO GO TO ANY OF THEM!’
What? What? What?
I was stunned but before I could react, the doctor had left and gone into another patient room.
I simply couldn’t take it anymore, and I broke down crying right there. The doctor’s assistants came in and I said – ‘what is going on here? UCSF – I didn’t even come to this doctor until after UCSF so how could she refer me? Two of the Neurologists that she referred me – 1) refused to even exam me because ‘did I expect him to believe a needle had done that to me?’, and 2) the second Neuro didn’t want to get in the middle with UCSF. Stanford Neurology said there was ‘nothing more they could do and perhaps I should go to the Mayo Clinic!
When the doctor came back, she denied in front of her assistants saying that to me – basically, calling me a liar, which upset me even more. Here was this doctor I trusted, and she was simply LYING.
What I learned next shocked me.
I had tried to explain to my DR that I had learned that my aunt had been diagnosed with MS. I wanted to know if it was possible I might have MS, and should we do a comparison MRI of my brain given that the last one was in 2009.
I said this seemed important given how FAST the spine damage progressed.
This is when the Dr. told me that, in fact, the UCSF MRI of my spine, neck and brain, had, in fact, SHOWN SPINE DAMAGE!
What? What? What?
Neither myself, nor my father, were told this information by the UCSF GP, EVER.
The UCSF doctor, when we begged to know why UCSF was not doing any testing, or treatment, they said ‘they had no idea what was causing the walking problems’ although they were POSITIVE it wasn’t RSD.’ When I asked why I could not have the MRI, we were told it was ‘political.’
Last week, we went to UCSF to get that 2009 MRI and report.
I had requested that MRI in August of 2011, never given, and then again, in November 2011, when I was told the MRI and report would be ‘sent to me in the mail,’ – it NEVER WAS.
Well, last week, they also refused to give the MRI over, claiming, once again, that they were going to ‘send the MRI and report’ by mail.
We were very lucky that the Radiology Department was able to give us the MRI.
Not only is the spine damage EVIDENT, and never mentioned to us, but, I’ve also learned that I had A CYST IN MY SINUS CAVITY.
We were NEVER TOLD ABOUT THIS CYST EITHER, NO TREATMENT WAS OFFERED. NOTHING.
To say I have been totally disillusioned with the efforts all these doctors and hospitals went to protect UCSF against Medical Malpractice, even the Administrative Court where I went over and over to seek relief to access medical treatment – its beyond comprehensible.
While I sit here with no food, no money, to think of what I have been subjected, just to protect UCSF, its beyond comprehensible.
My doctor saying I didn’t want to see a Neurologist is beyond belief given the numerous times and documented times I BEGGED to be seen by a Neurologist. I even filed a request for access to a NEUROLOGIST with the State of California, so, for my DR to now suggest I didn’t want to see a Neurologist, was more than I could bear.
I was so hurt, angry, distraught, I am sure there are more notations of what a ‘bad patient’ I am.
Last week, I went to a new Neurologist here in San Francisco. Referred by Medicare. A fresh start, with the new MRI’s and no longer being treated like some crazy woman out for benefits.
The Neurologist listened, then, asked, “have you filed a lawsuit against UCSF?,’ as the doctor asked me to hold my arms out and touch my nose. ‘A settlement?’
The Neurologist asked me to send her the ‘evidence’ of the MRI’s. I did.
I’ve never heard from her again and my calls to her office have gone unanswered.
Each time these doctors choose to protect UCSF and do nothing for me, sending me home with CRPS II, Spine Damage, Ganglion nerve cyst, Sinus cyst, with absolutely no care or concern or follow-up, it feels like a part of me is torn apart.
I have NEVER BEEN TAKEN SERIOUSLY SINCE I WAS INJURED AT UCSF, and even now, HAVING MRI’S AND EVIDENCE THAT I AM HURT, AND SICK, AND IN NEED OF MEDICAL ATTENTION, AND I STILL CAN NOT GET IT???
Let me tell you, this is one of the worst feelings in the world.
I can not help but notice that many CPRS patients deal with this kind of run around. I’ve heard that doctors who treat CPRS HATE these patients, hate their complaints, and many of them, think CPRS is made up!
Like that those doctors who were protecting the BENEFITS, all these trusted medical professionals worried more about UCSF, protecting public benefits and their own asses and nothing about caring, helping, healing or serving me.
In concert, these institutions prevented me from 1) receiving information about my own health and conditions, 2) prevented any further testing, treatment or diagnosis’, 2) failed to provide the appropriate testing to eliminate any other causes, and 3) failed to treat the condition of CPRS-II or spine damage or cysts.
In fact, when I think of how a wheelchair has been denied over and over, despite wheelchairs being issued commonly to RSD patients like myself who are no longer able to walk, the MRI’s we kept requesting and never got, when I think about how we were treated by the public agencies and these institutions who are supposed to protect and help patients, I am STUNNED THIS is CALLED HEALTH CARE.
First, I was injured, and experienced pain levels that were beyond anything – the highest levels of pain on the McGill Pain Scale – and TORTURED EMOTIONALLY, Refusing to help me in PM when I begged and cried in the UCSF Pain Management doctor office, begging them to please help me, the way they told me, laughing, ‘to buy some new shoes,’ and the way they lied, trumped-up mental health conditions, while telling myself and my dad, a psychiatrist, that this was ‘physical, not mental, but we don’t know what it is.’
I think of how on 2 occasions UCSF, instead of reporting the CRPS-II to SSDI, given the special designation of CPRS for people just like me who become disabled within weeks and can no longer work, UCSF lied and said I had a ‘sore back.’
We did not get benefits but instead lived on $561 dollars a month for two years, often, like now again, not having enough food or money for medicine and rent. My SSDI lawyer, despite telling her we were homeless, did not submit an SSI GA request for support, but instead said there was no provisions for someone like me, and never ever spoke to me before my hearing.
I lost good friends, colleagues, jobs while these prestigious medical institutions with SPECIALISTS IN RSD never even BOTHERED TO OFFER THEIR EXPERTISE to help me.
The experience I have been through these last 3 years has shattered many beliefs and faith I had in our country and the people. In the medical system, in doctors.
How much money did these doctors and institutions make from Medi-CARE and Medi-CAL while they lied and hid facts and information?
How much of my life, the life of my family did they take?
AND, WILL I BE ABLE TO GET ANY DOCTOR TO HELP ME?
WILL ANYONE HELP ME THAT WON’T BE AFRAID OF UCSF AND, NOW, STANFORD?
This past weekend, I came to terms with the fact that these doctors, these institutions were quite experienced at, and easily able to throw me under the bus, able to delay my care and testing for 3 years to protect themselves from liability.
It is what has motivated me to become a dedicated and serious advocate. I WILL BE SHARING MY STORY, and I WILL BE FIGHTING FOR PROTECTIONS;
A) To create a new system for patients who are INJURED at a hospital, to ensure a third-party is immediately interjected to PROTECT THE PATIENT AND MONITOR CARE OF THE PATIENT INJURED AT A HOSPITAL,
B) A COMPLETE CHANGE IN HOW RSD/CPRS PATIENTS ARE TREATED.
My case is extreme in the legal details since I was injured at UCSF, but, not rare in the lack of coordinated, careful and kind treatment.
I will be exploring what sort of Large Coordinated Effort RSD patients can undertake to ensure that officials and representatives have a CLEAR AND COMPLETE PICTURE OF WHAT IS HAPPENING TO RSD PATIENTS ACROSS THIS COUNTRY, MANY, MANY ARE NOT RECEIVING PROPER, APPROPRIATE AND CONDITION-SENSITIVE CARE..
Many are Veterans and Military who have RSD/CPRS from the line of duty. Many of these good people are now friends, and are inspiring as advocates themselves.
I WILL BE A FORCE FOR CHANGE.
I will add my voice to the chorus of RSD/CPRS patients demanding that CHANGE HAPPEN.
It’s simply unconscionable that because I was INJURED AND DISPOSED OF BY UCSF AND STANFORD, THAT I CAN NOT ACCESS ANY DOCTORS EVEN NOW.
What am I supposed to do?
In my next post, I will be announcing new changes to Letter of Courage – changes that will be in line with the goals described above.
I have sent out letters to Stanford, UCSF, San Francisco Health Plan, Nancy Pelosi, Marc Leno, the Department of Health Services ‘Disparities in Health,’ State of California, and the Civil Rights Division describing exactly what happened to me because many of these people/orgs have been informed since early on in the process.
Documentation of what I have shared here is available because I FOUGHT TO TRY TO GET THE ACCESS, TREATMENT AND COMPASSION I DESERVED, trying so very hard to be taken seriously, and to get equal access.
I will be sharing my story far and wide and making sure change comes to how RSD and CPRS is treated, how patients are treated.
In 2008, in November, one night as my child and I sat a dinner, me so very sick and trying so very hard to put on a good face for my child, to try with all my fiber to be myself like before the injury, I told my child that I knew there had to be a reason this awful experience was befalling me/us.
When I started Letters of Courage, it was to share my experience with RSD, to share how the condition impacted me as a patient, artist, a woman, and a mother.
I simply had NO IDEA what journey we were going to have to travel.
Well, now, I know that I will be using my skills and talent and intelligence to ENSURE THIS SORT OF TREATMENT NEVER HAPPENS TO ANYONE EVER AGAIN.
Its been sunny, but chilly. It’s that time of year when standing on my foot is painful, as if my foot bones were broken. Sharp shooting pains come out of nowhere. I feel myself become afraid. I tell myself to relax. Hold on to hope, hold on.
I’ve learned that apparently no one can find the MRI done on me two years ago. In fact, it was December 2009, a sudden appointment with neurology, I believed I was finally going to get help.
That was a joke. I got a phone call on a Sunday evening from the lowest doctor on the rung, telling me ‘you’ll get better.’
I don’t want to think back to that moment now that I have, it makes me sad.
Now, they say they can’t find my MRI. Oh, yeah. right.
I go back over the last year since I was told that the first hospital was ‘off-limits’ to me in December 2010.
I remember driving home with my Dad, in shock that my doctor had said that to me. I was crushed.
I was reviewing some old correspondence in my year-end cleaning. I came across emails I had forgotten. Twice, Stanford lost the first referral from my GP.
I was so distraught at the time, it seemed like more of the same from the first hospital.
It took my mom calling to ask that Stanford see me. They finally agreed. When the specialist said he knew exactly what happened to me, and told me about a patient of his in England who had just started Graduate School, I felt so hopeful. The nightmare was over.
Then, my medical files from the first hospital were ‘lost.’
No one could find the file I sent by email even though the file never bounced back.
I kept calling, I sent it over and over by email as they asked me to do. I even sent it by registered mail in time for our meeting. But, they didn’t want to talk about the MRI.
At all. Now, the MRI is lost.
I think back to the last appointment. I was told that I was ‘rude’ because I kept calling, and was anxious, that my medical file was lost.
I was told if I ‘do that again,’ I will be prohibited as a patient. Again.
Now, my MRI is lost, no one knows where it is. You can guess I’m not about to call to try to find out.
Ironically, since my dad is a doctor, I sent him the same medical record, and he reviewed the MRI himself. In fact, we talked with them about the MRI, and what he had seen on the MRI, in the meeting.
I mean, I was asking them if they didn’t want to perform even 1 (one) test at all???
Of course, what am I to do now? I can’t call chasing down my own MRI, otherwise, I might be ‘banned’ from the specialists.
Another symptom that has been spiking recently is the incessant pins and needles and itching. Its awful when it spikes at night, making it hard to sleep.
I’ve talked enough on this blog about how I’ve used the warm water (sometimes, hot) as a method of pain control and management.
Over time, I’ve added and experimented with various herbs. I’ve added ginger for inflammation, honey for soothing skin, lavender for relaxing, Epson Salt, and even various anti-oxidant fruits.
This month – Oatmeal!
I’ve added Oatmeal to see if it helps calm my skin in general, or if its more of a ‘spot’ treatment. Since the itching is often worst at night, I may just have to try a late night Oatmeal soak.
So far, I still had itching last night, but I’ve found relief during the day with the Oatmeal soaks so give it a try if you are so inclined.
Well, it has been a year of little progress on the treatment front. And, as I said, we’ve just lost our housing subsidy. While the delays piled on, lost referrals, lost records, lost MRI’s, a whole year has passed, and I am no closer to knowing what is going on or how to access treatment.
I hear people in my RSD support group talk about the testing and treatments, but none of those things are ever offered to me. I called an expert to find out if he can talk to my GP to find out what is going on.
Through prayer and alternative treatments, this year has been a HUGE gain. Spiritually and emotionally, I am a lot stronger within than last year feeling crushed when I was told in Dec 2010 that treatment access was never going to be offered at the first hospital.
The trauma of the last 3 years, of having a medical system that not only hurt me, but pushed me under the rug, attempted character assassination, gathered intelligence rather than help me, the entire experience was a huge lump that sat within me.
It’s a trauma I’ve never known.
It opened my eyes to the Tragedies in Health Care occurring every single day.
Even today, I hear about another woman with RSD who is losing her housing.
The other night, my son brought me to a bawling mess.
He shouted, ‘if there is a Creator, how did he let something like what happened to you happen?’
Alone, in the dark of night, I looked up to the sky and asked Creator, ‘how can we restore my child’s faith? Please help me because I do not have an answer for why this medical system has been able to get away with what it has.’
This horrendous process, from the moment I got hurt up to lost MRI’s today, has shaken the faith of a woman who was embarking on the job of a lifetime, and a 10-year old who watched mom get stuck in the arm with a needle, heard the bear cries into the night, and saw as the rest of our world came crashing down when soon I was unable even to walk. He saw what the medical and legal fields offered by way of help.
The alternative healers worked on me to remove that trauma so that I can grow strong again. Where every visit with the hospital was soul crushing, the work with the alternative healers offered positive discussion with the illness, and sought to mediate the damage of the trauma on my spirit and emotions. I must be strong so I can prove to my child.
I pray to the Creator to please help me restore my child’s faith in this New Year.
May you have pain-free days and walk a good road towards healing, and arriving at peace.
Sometimes, it’s not good to speak. This is what I have learned. Sometimes, words are only that – words.
Actions speak louder than words.
I had hoped for more action in my last appointment.
I suspect that the doctors had wished for fewer words from me.
I went with, what I felt, were reasonable questions. What I was asking for now was a conversation. Gone were the days of telling me they didn’t know what I had.
Now, I wanted to talk about what I had.
I had learned about all the possible tests for CRPS and nerve damage, so that I could be informed and calm, yet, also ask for information about whether my nerve was still injured, and if it was, why it had not shown up on the 2nd EMG, unlike the first time, when the technician personally went to make the appointment with the neurologist. The 2nd EMG, I was told, was hard to read because the hospital reported I was in ‘so much pain,’ and, yet, two different doctors came in to test me twice that day.
Now, two years later, can we do another EMG to see if I have nerve damage in my arm and leg?
But ever since my records from the first hospital had arrived, then, not arrived, suddenly, I had become a ‘kid’ and told to bring my dad along. Did they realize how old I was? Really, my father?
When the clarity of the first appointment there gave way to the sudden wishy-washy, I saw the familiar picture.
I first asked about ispolateral spread of the RSD. Why had that been ruled out in my case? I brought the recent journal article from Europe that showed isolateral spread is not random.
No one wanted to talk about it.
I was very sorry to learn that no new tests of any kind, I was told, were warranted.
I was also told I was rude.
And, told I was rude to the staff when I tried, for over a month, to locate my own personal medical files which the hospital had lost a month after the email was received.
I was told to send it again, but the email now bounced, over and over and over again.
I was already feeling a chill. Like the hospital where I was injured, a coloring of the situation had been set in motion and I was not asked to contribute to the landscape of understanding.
That’s not an easy place for me.
I was told we were starting from a fresh slate, and yet, still, there were no new tests. The one EMG scheduled at the new place was cancelled because an EMG had been done previously, almost two years ago now.
I was not asked about my symptoms, and was continually told my symptoms were on both sides of my body despite repeatedly trying to share my experience rather than the one painted in swaths on me.
I felt like the whole world of medicine and technology, boasted about and claimed as our advantage, completely cut off to me.
Another moment in this process with CRPS that makes me wonder, what exactly is going on with this condition? Why is there so much hostility to questions?
Why did the doctors seem shocked I knew about ipsolateral spread, or that I would ask why ipsolateral spread was not a reasonable consideration.
All questions or inquiry was missing.
This stunned me when so little is known about CRPS.
No one asked me anything about my experience.
Instead, I was threatened of losing access to care, again.
This time, because I had called so many times to try to track down my records the hospital lost. The staff had found me rude.
No one said it was rude to lose the files, or, for all the bounced emails when I resent the files again, and, again, and again. Like they didn’t have any other way of getting the files?
Of course, no one says its rude that I got hurt in the first place. Or that I was asked whether I filed a lawsuit rather then the doctors asking themselves whether a spinal block was necessary.
Being threatened again with ‘bothersome patient’ for wanting to be a collaborating partner, to be treated like an adult – which I am, by the way – and, be informed about what’s going on, to have access to the technology and tests that I read about in the journals, was more than I could handle.
Is this for real? What makes this acceptable medicine?
I am told that I should have taken the anti-depressant prescribed to me — even before the diagnosis had been complete — which was pulled the next year after a lawsuit in 2009 for excessive off-label use.
I asked why the doctors didn’t want to study me since I had not gone to pain killers right away, and, is it possible those drugs, in fact, make the CRPS worse?
As my father said on the way back home, ‘they don’t care what you have to say.’
The unfairness of having been hurt by the venipuncture wound, having them lie about what happened, and now, I can’t even be a part of the process? What I have to say doesn’t matter?
I guess not. I was hurt, put through a horrendous process, so why would anyone treating this illness, or who creates policy, want to know what happens to the patient in the US who suffers a venipuncture wound at a major hospital?
Of all the elements of CRPS treatment, the one most covered by insurance is Medication.
One of the other pain centers sends a long form with all kinds of warnings about pain medications, and how, even before being seen, patients will be put through a database, and on and on, and I wonder, what?
So, people hurt at hospitals, suffering extreme pain, now become drug suspects?
I don’t use painkillers and I don’t want to. I have rejected any narcotics. Why do I want to go into a situation where, off the bat, the entry door to help is submitting to a drug check?
It says the same thing as being told at my age to ‘bring my father.’
I didn’t ask to come into this RSD world. If I hadn’t been injured, maybe it would have been easier to get to a place of acceptance, if it had been some bad luck, but it wasn’t. It was the action of hurting my nerve during the blood draw, and the delays of months in treatment, and in fact, the utter denial of isolateral spread that led to further break down in the patient-doctor trust and care.
I’ve never been evaluated for a spinal unit or any other possible pain blockers. I am told, I must first take the Medication.
The doctors know that my insurance won’t now cover mental health support, nor a specialist RSD PT. They know that potentially two out of three treatment pillars won’t be available to patients who can’t pay for it on their own.
I asked if they understood that I would not be able to access those services.
No one says that’s rude.
It simply breaks my heart the approach and process CRPS took in my case. I cry when I think back to all the positive experiences I had with doctors before this condition, before I was suddenly on trial for an injury, and my body accused for it’s reaction to the injury.
I read this week about a man who had the very same thing happen to him that happened to me. A blood draw during which his nerve was hit, and just like in my case, the nurse continued to draw blood after the injury.
In my case, the state investigator refused to interview the witness who saw that two vials of blood that were drawn, nor to the attending physician who initially diagnosed the venipuncture RSD. Instead, the investigator took the hospital’s word. She laughed at me and said the RSD must be my age since she had never heard of a needle doing what happened to me. She said my records showed, incorrectly, that I had taken drugs, pain killers. I offered to have a notary count and certify that I had not taken any of the pain killers originally given to me.
This was the state! I felt I had no recourse. In fact, the state investigator said I didn’t have any recourse to their ultimate finding that nothing happened to me. Erased.
I couldn’t fight anymore on my own.
I was tired, from the RSD, from the pain, from not being able to work, from being tossed out when I could no longer afford the rent, told we had 2 weeks.
The man I read about who developed CRPS following the nerve damage from the venipuncture wound had experienced the same thing.
The man’s attorney called the case a ‘David vs. Goliath’ trial against the hospital for the award of $2.5 million dollars.
I think about the bright, well-educated and prosperous S.F. attorneys who laughed at me when I tried to get help, who said there was no way a needle could cause the damage that I had experienced. Those laughs, I would find, were pretty tame in comparison with the many accusations, not only that I was looking for pain killers, but, a way out a bad economy.
My way out of the bad economy 3 years ago had been the producing job I had been referred by a professional colleague and for which I had made it to the second round when the venipuncture wound happened.
Where before I had not been involved with hearings and medical rights, suddenly, I would show up now as on the records defending my access to health care, needing ssdi and calworks.
Not my idea of success.
The investigator didn’t say anything when I told her I didn’t take pain killers. No laugh. No apology.
The one thing to come out of the appointment with my doctors was a prescription for 12 weeks of physical therapy with mirror box therapy, 2x a week.
I was surprised to hear they did not think a specialist PT in CRPS was necessary.
So, the search for a PT begins. Below, I offer some tips on how to find a good PT for CRPS.
Right now, I face daunting housing challenges I feel entirely incapable of handling. I struggle to hold on to faith.
Yesterday, I had a meeting with a disability specialist to see if there is any way I can find another apartment, on the first floor, so I can try to get out more often, to keep pushing myself.
Even after three years, the doctors said the other day I should not have a wheelchair as I might become dependent on the wheelchair.
I was upset and said ‘but, it’s not you who can’t get out to get to the store or out with people!’
I felt embarrassed to speak so directly, or to let my emotions get beyond me – to be emotionally unintelligent.
Say nothing of being dependent on an in-home care worker for groceries, laundry, and the limited options of going out every day to try to walk. No one seems to care.
After a year, and numerous attempts to get the appropriate paperwork from the local paratransit service, I was finally been approved for more taxi script so I can try to get out more often by taxi, and not have to fear how to get to and from home, especially those days when every step can be so excruciating.
If I share with you the challenges of finding affordable housing for disabled people in a large city today, I will not serve my goal of being positive. And, I want to be positive.
Ironically, most disabled housing is often with senior housing which don’t allow children. And, yet, I was told today that most likely we won’t continue to receive help with rent because my son is away at school during part of the year so we are no longer considered a family.
I felt so discouraged. I had no idea the challenges of disabled people. I know that part of this journey is seeing what I had not known of previously, yet, often it’s so overwhelmingly difficult to view, I am often speechless.
I am grateful to friends who each contribute in their own way to giving me faith, to help me hold on to faith in the face of overwhelming and daunting challenges.
If I think about disabled housing from this new vantage point. Its now very important for me to have a home that is also within a community, with access to the needs of daily life, interaction with people of all ages.
Now, where I live and how I live becomes really important. Before, a car and gas money and physical strength in my right leg made possible visiting with friends in so many places.
Physical Therapy and American RSD Hope
I started physical therapy last week. I was so anxious to get started, I went to the PT in the building with my GP. I asked whether the PT had experience with CRPS, which he said he did but had not treated anyone with CRPS. I could tell the PT was a great trainer, the gym offered many items like a bike and weights and mats. Still, when we didn’t start with mirror box therapy, I was a bit concerned. The PT said we weren’t going to worry about the CRPS.
Its been warm out lately, which is always good for me. It’s already November and still, I can sleep often with the windows open, a rare treat where usually the winds and chill blow through at this time of year. I felt pretty strong at the first appointment.
I have been able to get to a point now, from limited activity on the limbs, where I have beat back the daily excruciating burning and deep pain, and enough days that my brain has begun to consider myself starting to heal, like I have made improvements.
Walking and use of my right arm are the activities that I can not seem to master, jump the blockades if you will.
I was in more pain after the first day of PT, but I thought, NO PAIN, NO GAIN, right!
By the day of the second appointment, the pain and lack of movement were pronounced just getting to the PT. I was embarrassed to cry through most of the appointment, and remind the PT that I was not on any pain killers.
When the blisters appeared and swelling started to spread over to the left side after the second appointment, I knew I had to face that I had acted too quickly, and needed to take the time to find a specialist PT.
I was also concerned that the PT’s assistant had wanted me to sign a paper stating that Medicare had an annual cap of 15 physical therapy appointments a year, which they do, yet I knew that 15 sessions was already fewer than what had been ordered by the doctors. I felt the stress of having to deal once again with explaining the condition to more laughing faces. I shuttered.
I found this great site American RSD Hope which provided many answers to the stresses of these questions. The American RSD Hope site has a great section on how to choose a Physical Therapist, and the importance of finding a PT who not only has heard of the condition, but who has treated at least 5 patients.
Admittedly, the bored huffing of the PT frustrated by my performance by only the second PT appointment convinced me that I had to admit that the trauma of speaking with unknowing faces from doctors for 3 years has produced a strong counter-reaction in me that makes it hard to stand any longer being in such a situation.
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I knew I could not bare working with, albeit a kind person, someone who did not have experience with the challenge of CRPS.
I suppose the purpose of starting with mirror box therapy is that the potential ‘off’ switch for CRPS is in the brain, not in the muscles.
HOPE – In capitals!
I have shared on this blog the story of Joseph Martinez, a young teenager who got CRPS from a horrible stomach flu. He was transported by medical helicopter to Stanford before he began working with Dr. Rhodes in Corpus Christi, Texas. Joseph started his treatment a few weeks after my Medicare became effective. I was hopeful I too could go there for treatment.
Unfortunately, Medicare had decided to stop covering Dr. Rhodes treatment.
Well, in the week of my very discouraging meeting with the doctors, I received the most exciting text message from Joseph’s mother that Joseph Martinez had not only been able to stop using a wheelchair and walker, but he was GOING HOME!!!
I was so happy that this young man has a new lease on life, a chance to be a kid, a teenager, and to go on to be an amazing person in this world. Joseph’s mother sent me wishes of prayers for my healing and I was so grateful.
Joseph’s ongoing recovery and his mother’s prayers for me eased the sadness I felt knowing that getting to Corpus and paying for the treatment was more than I could afford.
I am working through emotions too as part of my healing. Learning to feel and accept even difficult realizations is healthy and maintains emotional fitness.
Lately, I’ve had to deal with my feelings about how my life has changed since CRPS.
Some days, I simply can’t work through the issues of sustainability, which only exacerbates the stress I place on myself. If this is in my brain I reason, I must be able to turn the CRPS switch off.
I must get on with my life. A drum beat to get back on my feet.
The fear of not being able to provide for one’s family when disabled is to a degree I thankfully did not know before. Yes, as an artist, it’s always been tough, but each day you can hit the pavement is a chance to change things around.
The challenge while disabled is much more overwhelming that I could have imagined.
When I read about a recent study that there might be a ‘fear’ element to using limbs after the onset of CRPS, I find myself feeling again a disconnect from people who study this condition.
If they only knew the fear that comes from losing one’s ability, and in the process, all the other overwhelming aspects that come with CRPS.
The Fear of Using My Limbs is the least of my Fears.
In fact, I dream of walking. I daydream myself dancing, walking, living a life again, to make it out to the social events I am invited rather than sitting at home.
It’s not the fear of the pain, it’s the actual pain that pushes back even the best of my intentions.
Mind blowing, scary levels of pain that will make anyone sit down rather than walk to have the pain stop.
As I sat soaking my limbs and body after the two PT sessions, I had to recognize the deep sadness I feel to not be able to go out socially as I have done my whole life, or to be able to set out myself, or with family, on an adventure.
I’ve promised to attend so many things, and yet, in the moment, I recognize the reality of what going out means. Several days to recover from the pounding pain from standing on my leg for any length of time, or dull, deep pain in my leg and arm, and then, the burning.
So, I have to measure, in the moment, what is doable.
Empowered by the physical therapy and wanting to just push through the pain, I tried to move around and organize boxes of my work and our family memorabilia.
I was shocked to see my wrist swollen so large and so quickly.
I was shocked to see how quickly I was back in the tub soaking to warm my body and try to tame the burning in my right arm, the severe stabbing pains in my right leg.
All my natural responses to fight through the pain – ‘No Pain, No Gain’ – the motto that inspired me to swim 5x a week in college, and walking and dancing for fun as an adult – does not help me now.
As the RSD resource explained, with CRPS, it’s the opposite,
‘NO PAIN, GAIN FOR CRPS PATIENTS’
Meditation Mantra – ‘I am the Doctor’ – What does this mean?
I meditate on letting go. Letting go of feelings of lack, of lack of understanding and support from the doctors, working to let go of accusations.
In the meeting with the doctors, I sensed they believed that my mantra ‘I am the doctor’ is literally my belief — like I am a doctor.
No. I do not think I am a doctor.
‘I am the doctor’ was a healing mantra I started using to try to activate any and all possible healing mechanisms and energy I possess within my own body.
In today’s terms, I guess this belief can be termed a healthy mantra for ‘taking responsibility for my own health.’
Faced with doctors who do not have consensus, let alone a cure for CRPS, and considering the lack of access from the start after the Venipuncture RSD diagnosis originally, the long journey of 3 years to a specialist that was located a mere 30 minutes away from my home, my sanity demanded that I not come home crushed every time I saw those blank faces staring back.
The mantra was my defense.
A healing meditation to retain and strength my mental health, and in the process, my physical health.
HOLDING ON TO FAITH
I must balance the desire to walk with the reality, balance loss and gain, have faith.
I am also working hard to accept the amazing support and abundance in my life, even when I feel so hopeless sometimes. To focus on the positive aspects of my art business which is starting to see some positive signs of life. I have begun my consulting with the art business expert and have been energized to continue to look ahead and see possibility still.
I am deeply grateful to all the people who have been sending me prayers.
I seek to embrace the abundance that does exist, opening myself up again to long-time friends and the many good people in my life, who encourage me to hold on to faith.
I want to give great thanks to the community in Guatemala who are devoting days of prayers to my healing, I am humbled by their generosity. I am so grateful for so many prayers from people who barely know me, and pray as much as those who have loved me for years.
Their faith that I deserve healing, their willingness to give up food and water to make the prayers stronger, for my healing, tells me a lot about medicine.
I feel the worst about myself when I face my role as the provider, the sole provider. I feel trapped when I consider how to work harder when my legs can not carry me faster. It’s then I feel so hopeless. So, I have to hold on to faith.
All I can do now is put my faith in the prayers, and pray to find the right PT.
I did find a doctor who is very experienced with CRPS, and he employs alternative methods. I was so excited to find him. Then, I found out he doesn’t take insurance. I don’t know how I’d be able to afford it given the other challenges.
I did find a PT that takes Medicare and I start next week. They have experience working with nerve injuries. They offer a range of approaches and although mirror box therapy is not yet a modality they offer, the assistant said they’d check into it. The PT’s office was also familiar with the Medicare exception and it was nice to not have to also be concerned on that front given that I will start with 24 PT sessions.
This week, someone said that I might actually get better from the PT. I had just read about a variety of people who had tried so many different approaches to CRPS without success, so I was less optimistic.
But, its true, I might heal from the PT. It took so long to get access, my friend’s reminder helped me retain hope. I started informing myself about the best way for CRPS patients to choose their PT, and by learning about the CRPS exception for physical therapy.