Losing Hope, FINDING COURAGE

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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.

And, ANGRY.

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.

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4 thoughts on “Losing Hope, FINDING COURAGE

    sunlight in winter said:
    April 18, 2013 at 7:03 am

    I just read your story… I am so sorry that this happened to you. I hope you are doing better these days.

      Sweet Entertainment responded:
      October 29, 2014 at 6:58 am

      Thank you Sunlight in Winter! I do appreciate your kindness, every bit of understanding adds to my healing. I took a long hiatus in writing about my experience as the challenges were daunting. I continue to try to raise awareness as much as I can, including the new ‘Light a Flame’ Campaign to go along with a new art project I am launching to spark greater awareness of VRSD, and RSD in general. Thank you again, and may this reply find you in good spirits and health.

    Lisa (@purplebutterly7) said:
    September 2, 2012 at 1:35 am

    My injury happened at work after my fall and I was told I had to work 180 days and because I could not get back to my full time duties they fired me on the 181th day. After that I was sent home to wait on surgery. A year after my injury I recieved surgery. I was already showing amall signs of CPRS/RSD but, after the surgery they worse. It has been 6 years and I just had a second surgery to fix a problem with the first.
    I am still battling with the work comp insurance which like you has amazed me. At the begining I thought I was being sent to their doctors for IME’s to get me help. OH NO…it was to judge me, call me crazy, tell me that most patients act this way to just get the benefits. I am about to have my fourth IME and so far each doctor has treated me that way.
    Like you, I LOVED my job, honestly I was awesome at it. My life was almost perfect..I moved up easily in my company and was begged my upper mangement and coroporate to expand my talent to different parts of the division. My life, marriage, children couldnt have been any better. I was always a happy, out going person.
    So, how could these doctors say this about me. All I wanted was help, I didnt understand what was going on to my body. The first surgeon diganosed me with CPRS and sent me to a pain doctor in Atlanta at Emory Midtown Hospital. I thought finally a doctor that isnt a workcomp insurance doctor..I will get help. I went through several injections, she burnt my nerves, I have had neurotin, cymbalta,savella, vicodin, loratab, Lidoderm patches, bustran patches, many, many muscle relaxers, voltren gel, voltren pills, fentnyal patch, methadone and meds right now I cant even think of right now (I have liver damage because it wasnt kept up with). But, yet she will deny that I have temp changes,cold rushing water feeling that will turn to a frozen feeling in my leg, swelling, burning, pin/needles, hypersensitivity. Which now has progressed to feeling like knifes cutting, bee stings, headaches, nausea, nose bleeds and the foot drop is so bad my leg drags when I do walk and then it will just “scoot” on the floor so then I am in a wheel chair. The doctors that work under her will look at me and ask me why she dont send me to someone else if she dont know what to do or they question my treatment she is giving me. She tells us,” well, the insurance wont pay for it” or “i dont know what to do”. She will come in after seeing her almost 5 years and run her hand down my leg so hard just to see how i react and ask if it hurts. She wont send me to a neuro surgeon and everytime we have had EKG done by a podiatrist or MRI’s or another surgeon or a second opnion pain doctor she will say either she never got the report or if I bring it that she cant read it or dont understand it. I have had other doctors say I am disabled, unemployable…she says that she never says no one is disabled because if you can pick up a phone you can find a job but, she will say that if i do find one I would not be able to keep it due to my condition…????
    After begging to go to a therapist that helped me and had 35 years expienrence in this..which she knew and had worked with, she finally did …ONLY that when the therapist told her what was wrong and what I needed to help me after my second surgery the pain doctor would not return her calls even thought the therapist called everyday for two weeks.
    I have been so upset with what has been wrtiten about me that I have panic attacks when I must see these doctors.
    I seen one doctor who made me sign a paper that said my husband or no one could be in the exam room with me…now I know why. He was an insurance doctor..a neuosurgeon, At our visit, he talked of hating being a doctor, he wanted to be a farmer. I ask him if we could move a sheet off my leg because the touch of it was painful, he looked at me strange, I had been off any meds for 33 days and was in so much pain tears just ran down my eyes, he wrote in the report that i was crying exessivly to gain attention, that he believed i was being false in my statements. My physicologists knew this doctor because he had used him for his own physican with a neurology problem he had and told me to make sure I took my pain journals that he felt it would help him to understand what I was going through. When I did show him the journals he said this is obsessive while just glacing through the first two pages, and the called the others vol one and two and laughed.
    When I tell the doctors I only sleep about two hours a night because of the pain, that my husband and I spend hours massaging and trying to keep me comfortable, that clothes hurt to wear, that I go no where and now have no friends, that I fall all the time, depend on my family for all my needs..showering, cooking, what little shopping I may do, they listen and then the reports will say that I have a social problem, they believe I have a drinking problem, It has been stated that becausse my father is disabled (heart attack that almost killed him at 42) that I just want to be disabled.
    i hve been tested for 8 hours by phyciologists and when they ask kme questions they always get turned around and yes THEY DO LIE!!!
    When did having MD behind your name make you a saint and not lie.

    I could write for years on how I have been judged, called a liar, told I had mental problems, that I was faking it (how do you fake EMG and MRI’s?) . I have been denied medication, doctors, therapist by the insurance company. I have to fight for everything even with when a doctor says I need it. froze
    All I want is help with my CRPS/RSD..so I can play with my grandkids, I can have a normal relationship with my husband not the patient and nurse relationship. So,I am not in pain 24/7. I just want what I should be given do to this injury..not become a millionaire.
    I would rather work and have a normal life.
    The doctor wont help my attorney or the ones who know how to get me to a doctor that can. But, she will along with the doctors that did my IME’s help the insurance.
    I just dont know how these people sleep at night.

      Sweet Entertainment said:
      September 11, 2012 at 11:35 pm

      Lisa, I am very sorry to hear what is happening to you, and has happened. Its very sad and shocking that doctors have installed themselves as gatekeepers, meting out treatment prescribed by the companies and agencies seeking to save a buck on the back of people who have a very complicated, serious, and physical – not mental – disability.

      I am working now on a program that will see the United States implement a mediation program for patients hurt at hospitals.

      Its simply too easy for these institutions to take advantage and its sad but true their only interest is saving money for their shareholders and profit.

      Patients hurt at hospitals need knowledgeable third parties who will be charged to ensure patients receive the APPROPRIATE treatment.

      I encourage you to also write your representatives about CPRS and the very unique situation that this condition brings in terms of immediate and total disability, and the very SUSCEPTIBLE nature that patients with this condition experience given the Extreme Pain levels – particularly after the injury – which in my case was a blood draw that damaged the nerve in my right arm.

      To those from whom I sought help, I seemed like a raving lunatic. They did not understand what it was like to be in that much pain, have no idea and the DRS have no idea how to cure, and instead, begin cancelling appointments, losing paperwork, receptionists subtle laughing as the patient complaining calls back.

      They do not understand that patients with CPRS on average, are in fact, very ACTIVE people, who Love what they do, and to be immediately (and without any actual evidence) as someone out to seek benefits is very cheap.

      In fact, from the insurer to the hospital, all they see is lifelong care for something they do not know how to fix.

      Ironically, their actions of delaying and obstructing any immediate care often means the patient is well beyond the time when treatment can make a difference and now, the institution and insurer are on the hook for lifetime liability.

      A Mediation Program for Patients Injured at US Hospitals can benefit institutions and insurers who apparently are not contained by morals or ethics but only dollars and this makes dollars and sense too.

      I have brought a civil rights complaint against the Public Agency that denied in home support for three years, and began a discriminatory retaliatory action of constantly discontinuing our family of benefits.

      I will seek compensation from these institutions because dollars and sense talks to them and they need to hear that its UNACCEPTABLE to treat CPRS patients this way and if they do, they are going to need to pay for the injury, and the delaying and denying of treatment.

      I honestly believe its this sort of action that will change the education and approach of CPRS in the United States. Research in the U.S. is lagging and is influenced – yes, once again – by the very institutions that stand to gain money from pretending this is some women’s condition that afflicts emotional females.

      Can you imagine that before any MRI of my ankle or spine was done, these doctors who hurt me and then denied me care, bring me in at Christmas time to ask whether I was sexually abused.

      This system for treating and relating with CPRS patients is abusive and hiding it behind this ‘incurable’ condition is bogus.

      There are new CPRS patients every day – many are children – its imperative that we speak up as the adults and INSIST that treatment for CPRS patients changes, that insurance coverage for CPRS be adjusted to be able to QUICKLY treat patients.

      Most importantly, We Need a Mediation Program for Patients Injured at U.S. Hospital.

      It is simply too easy for patients to be abused at a time when they are least able to defend themselves.

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