Global CPRS Databank

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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A Year Later….

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Letters of Courage
Winter Skies #1

Today, our housing support ends.

I don’t know what comes next.

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.

Letters of Courage
Winter Skies #2

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.

OATMEAL

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.

Winter Skies #3

New Year

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.

Happy New Year!

Faith, Holding on to Hope – Physical therapy

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'San Francisco Bay at Sunset, 2011,' photo by Catherine Herrera 6 of 36
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Actions, Not words

At times, like now, it’s not easy to write.

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.

'San Francisco Bay at Sunset, 2011,' photo by Catherine Herrera 11 of 36
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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.

'San Francisco Bay at Sunset, 2011,' photo by Catherine Herrera
Click on the image to visit a secure site for fine art prints and gifts as seen on this site.

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?

'San Francisco Bay at Sunset, 2011,' photo by Catherine Herrera 13 of 36
Click on the image to visit a secure site for fine art prints and gifts as seen on this site.

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.

'San Francisco Bay at Sunset, 2011,' photo by Catherine Herrera
Click on the image to visit a secure site for fine art prints and gifts as seen on this site.

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.

Housing

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.

'San Francisco Bay at Sunset, 2011,' photo by Catherine Herrera
Click on the image to visit a secure site for fine art prints and gifts as seen on this site.

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.

'San Francisco Bay at Sunset, 2011,' photo by Catherine Herrera
Click on the image to visit a secure site for fine art prints and gifts as seen on this site.

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.

'San Francisco Bay at Sunset, 2011,' photo by Catherine Herrera
Click on the image to visit a secure site for fine art prints and gifts as seen on this site
Click on the image to visit a secure site for fine art prints and gifts as seen on this site.

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.

See a broadcast about Dr. Rhodes success with patients from around the world!

Is there an exception for Physical Therapy with CRPS?

I also found an answer about the Medicare and PT appointments for CRPS patients. Please visit this link to access the valuable information American RSD Hope about the Medicare Annual Cap on Physical Therapy.

‘NO PAIN, GAIN FOR CRPS PATIENTS’

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.

'San Francisco Bay at Sunset, 2011,' photo by Catherine Herrera
Click on the image to visit a secure site for fine art prints and gifts as seen on this site.

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.

'San Francisco Bay at Sunset, 2011,' photo by Catherine Herrera
Click on the image to visit a secure site for fine art prints and gifts as seen on this site.

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.’

'San Francisco Bay at Sunset, 2011,' photo by Catherine Herrera
Click on the image to visit a secure site for fine art prints and gifts as seen on this site

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.

'San Francisco Bay at Sunset, 2011,' photo by Catherine Herrera
Click on the image to visit a secure site for fine art prints and gifts as seen on this site

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.

Resuming hope….

Amazzzing Honey!

Posted on

Its been a while since I’ve written.

After my second appointment at Stanford, both myself and the woman who helps me, we both caught a horrible flu.

I haven’t had a flu-like that for a long time.

I haven’t written much either because not much else has happened.

I feel very fortunate to be meeting with the doctors at Stanford. It was such a relief to hear the doctor say immediately he knew what I had. When we were in the waiting room, we talked to a couple who had traveled from Bakersfield for their appointment. They told us in Spanish they drove the distance because the doctors at Stanford were the best in the world.

It’s a relief to meet with experts who know and understand RSD. I mean, I feel lucky to talk with them. They are on the cusp of this fight to find an answer for RSD.

I met with my GP. She recommended taking a semester off from SFAI so I can work with the pain specialists. Unfortunately, the SFAI program is a year-long, so that means I can’t go back until next September.

Not the news I had hoped for, yet, I had to open myself to seeing the positive side of focusing on getting completely better.

Mobility

I went to the bank and store the other day, walking and rolling my cart was unbearably painful and I caught a cab home. I felt rather defeated.

When I go to the Stanford Pain Clinic, which is in the back of the wing, I can use one of the many wheelchairs, and avoid the painstakingly slow pace of walking.

I love how fast I can move and get myself around.

I hope that until I can get back on my feet, I can finally obtain a mobility device. I think a scooter, mobility, can really help in the meantime.

The insurance rejected the request for a wheelchair, several times. They said I wasn’t diagnosed so they couldn’t approve the chair.

Now, I am told, with Medicare, all I have to do is ask.

Well, I called and called, but the Medicare number kept disconnecting after a few rings.

So, is that the joke. All you have to do is ask, if, you can get through?

I liked the rush of air on my face when I was in the wheelchair, feeling my hair blowing in the breeze.

Until now, I didn’t realize how long its been since I’ve felt that sensation.

Tests and Records

My GP said that the neurologist had ordered more specialized blood tests, and that Stanford confirmed CRPS II. She also said they were concerned about a possible spinal issue.

That was a surprise.

I sent my records of EMGs and MRI’s so let’s see what Stanford can see from those tests.

Maybe Stanford will schedule new tests. Now, 2 years have passed since the last ones.

Wait and see.

Urgency

In the meantime, I am starting to adjust a bit now to the change in my child being away for the first time. He’s at home now for the monthly break so I am happy to be with him. I had hoped in the month he’s been gone, I’d have more answers, and be further along in the treatment.

Its been over a month since I sent the first copy of my medical record from the first doctors I was seen during the first 3 years.

I get angry with the waiting.

I have a child to support.

I have a life I want to get back to, opportunities that are my dreams, a lifetime of working towards. I was interviewing for a documentary series when I was injured. I want to go back to my career.

Despite the doctors signing reports and notes, the social services continue every month to delay our benefits. Every month. I feel like I am being punished for needing the disability support. It compounds the sense of loss to not be able to work like before, do what I could before, and I feel badly to not provide.

I wonder, is this how other disabled people are treated each month too?

Its exhausting.

This week, I allowed myself to feel the frustration in not being physically well, particularly since, for the first time in over a decade, my single parenthood schedule is different enough so that I can consider returning to my career full-time.

I feel an urgency to have the testing and evaluation done so that treatment can finally happen.

Why is it so hard to get the results of tests that hospitals and doctors have access?

Spreading of RSD

Still, no one can tell me what’s wrong in my right leg. Still, the specialists say, RSD generally doesn’t travel.

So, what of  the hundreds and hundreds of people with RSD in whom it spreads, is documented to have spread?

The whole issue of whether RSD can spread to another limb was the big question that held up treatment for an assessment of what else could be causing the leg issue. That’s been going on for 3 years.

Well, this conundrum I am told, is one of the many aspects of the RSD debate.

So, when I recently found this study, its findings helped clear up the debate for me.

The spreading of the RSD from my right arm to my right leg is not unheard of — in fact, this type of spreading is called ‘Ipsilateral,’ as opposed to ‘Contralateral,’ which the name implies, spreads from one limb to the limb on the other side.

Spreading of CRPS is not random, the study concluded.

In fact, I rarely read of when RSD doesn’t spread.

Why am I being told this kinda thing? Still?

The article published in February 2011 summarizes a study at the Department of Neurology of the Leiden University Medical Center of 185 patients.

Ispilateral spread occurs less frequently, but does tend to show up in younger patients, and may point to other genetic and immunological components still being studied.

As with all research, it’s always best to read the source article (link above) as I’ve only provided here a simple, non-medical summary. I read this article on what I have found so far to be one of the most dynamic of the research sites, T. Howard Blacks Definitive Link Library on RSD.

Why then the lack of testing with all that equipment to find out what is wrong in my leg if it’s not RSD?

The urgency of making a living for myself and my son makes this debate so esoteric as to feel rude. Especially while it’s so hard to even get those devices that can improve mobility. Three years have passed since I have walked without pain.

Dreaming

I had another dream. This time, I saw myself walking around a new neighborhood, and I remember looking at myself with happiness to see that I was not walking with the cane any longer.

Community Healing and Prayer

One of the nurses shared with me how much prayer had helped her daughter and asked if I had begun praying.

I have not written much here about that part of my healing journey. Maybe I should have written more, but, all the outcomes are what I share in my writing.

Prayer, no doubt, has been an element from the start. For those moments of horrific, mind-blowing pain, you can believe me, prayer is a huge part of making it through that type of pain.

I have been fortunate to have so many people praying for my recovery from CRPS, and, I have participated in group prayers for healing.

I have felt an improvement in my mood, and decrease in my sense of isolation.

I am inspired by so many with stories of healing, even, when all hope was lost.

Ever since I read there are cases of spontaneous healing of CRPS, I have set my sights on doing just that – healing.

Looking within – Art as Healer

At the same time, as my grandfather taught me – ‘when there is a problem, look inside first.’

It wasn’t easy because I was in so much physical pain, but, I also began to take a look at my own life and who I was as a person. My art during this time, captured in this video below, was part of my healing work.

Art was my refuge, a place to pour my feelings so I could move past the anger I felt about suddenly having a horrific pain and disability where the day before I had none. I know everyone with this condition understands that feeling.

The woman floating on the ocean, and the one at the end, where she is sitting on the banks by the ocean holding a shell above her head, were recently published in the program announcing the screening of my film.

I have so much in life I want to return. I am just grateful for the art I can do still.

I stopped drawing and painting after we became homeless. My supplies are in storage still, hoping soon I can leave this perch on the 3rd floor, to get to the ground so I might try to get out more often, and get my things out of storage. I’d like to start drawing and painting again.

Measuring Pain

When I was seen by the new doctors, I was told the pain in my arm and leg were separate, unconnected.

I had never thought of it.

So, I spent the last few weeks observing – is the pain connected?

I never found a time when my arm and leg pain was disconnected. In the morning when I wake, it’s there – sometimes less, sometimes more. Yet, always there, on both limbs.

My arm pain may be less in comparison to the leg when the pain spikes from walking, but, like last Sunday, when I screened my film at an event, all this week, my entire right side was in deep, deep pain for several days afterwards. All week, my ankle has that swollen ball from which the pain seems particularly worse.

If Venipuncture RSD is so rare, why do they keep trying to tell me what is happening in my body instead of asking me?

My dad will say that the pain switch that goes on with CRPS is triggered by stress so in a way, that pain and disability was always there, just latent, and the stress of my artistic, on-the-edge life is what eventually caused the CRPS.

Yet, a new study adds to a growing body of work that seeks to dispel – once and for all – the notion that CRPS is caused by emotional or psychological issues. The 2010 study published in Joint Bone Spine Journal (Vol. 78, pages 194-199) found that biopsychological complexity is not associated with perceived pain in CRPS type I. Although different from the CRPS II with nerve damage, I wonder if the study applies.

So, its back to that question – does the fact that I didn’t recover from the Venipuncture wound, vs. someone who does, mean that there is an emotional/stress factor that causes CRPS?

The Debate.

I don’t know the answer. When I offer to go to therapy 5x a week if it can make me walk, in three years, no one has taken me up on the offer.

Do I resent the debate being carried out on CRPS patients? Yep.

If the issue of who does or doesn’t experience pain is such an important debate, well, how about trying the study on cancer patients with neuropathic pain, or patients going for a root canal. Do a whole psychological work up to find out what might be making it possible for those, and not others, to feel the pain from their conditions.

And, make sure to deny that they should even feel that pain.

I mean really.

I read about this new innovative test for verifying pain. Like measuring heartbeat (yep, I’ve felt my heart speed up when extreme pain strikes. Like cutting my food the other night at dinner, when a sharp pain caused me to drop the fork and knife like hot coals), or, sweating with increased pain (check).

It occurs to me, there might be some simpler answers.

Why hasn’t one of these doctors, in three years, ever gone walking with me?

I mean, simply walk outside, around the block, observe what happens when I walk, where the pain is, and how it impacts my walking.

Not only do we do no walking, there is no actual exam of my leg or arm. No tests for weakness or damage to the bones.

I sit on a table for 15, maybe 15 minutes, sometimes an hour, that’s it. How are they going to know the pain when I am not using my leg and arm?

“Self-reporting” pain

Excuse me, is there any other type of reporting?

I’ve never been asked to log my pain, or describe the symptoms over time, or to share how the symptoms change with weather.

How exactly do doctors find out about pain?

If there is a way, in 3 years since the Venipuncture RSD, I have not been shared those tests or methods.

Meanwhile, I continue to wait to hear about the results of scientific, medical procedures to know whether there is radial nerve damage still in my arm and leg, and whether there might be a spine issue.

CRPS vs. Neuropathic pain?

In 3 years, no one has been able to say whether its possible to have nerve pain and not have CRPS. I’ve asked, over and over.

I mean, if my nerve was injured, what makes it CRPS and not just plain painful nerve damage? These are questions no one answers because they say they don’t know why – why someone with spinal injuries can report no pain at all and why people with a simple nerve damage from a needle can have pain.

Well, in a study published in the European Journal of Neurology 2010, (vol. 17, pages 1010-1018,) carried out by a team of experts from various Pain and Neurology Clinics and University Departments from around Europe. The study sought to consider the guidelines for Neuropathic Pain Assessment, and the tools used to make NP diagnosis.

Interestingly, the study found that NP can often be confused with CRPS, with the study authors, in fact, finding that CRPS can sometimes be ‘overdiagnosed’ where possibly a Neuropathy or NP related condition is instead a proper diagnosis.

The study concludes by sharing which testing mechanisms the team assessed and found useful in diagnosing Neuropathic pain.

Again, please read the study yourself, or talk over with your doctors, to get a medical review of the article.

Reflection – A Mutual Benefit

I know others with CRPS can also understand how awful it can be to have someone pointing the finger at you when they themselves have no real answers either.

If we are asked as patients to dig into our personal lives to see how our actions could be cause for CRPS, why not the same of the medical system that treats the condition?

After my experience, I think these are valid questions.

As many times as I’ve been asked whether I filed a lawsuit, why has no doctor asked more about the pain, or done any testing?

Why can I still not get a factual answer about what the tests done up to now say?

And, if Venipuncture RSD is so rare, why am I spoken to like they have all the answers or know all about it?

I feel lucky to be able now to see the experts at Stanford, known for its innovative research.

I will meet with the experts next week.

HONEY – 20 amazing uses!

I’ve written before how Honey has been life-saving for me with the nausea that results when I exert myself physically. I’ve also written how using honey over the last year seems to have actually improved the nausea that came even when I was lying down, and got worse as the pain increased.

Well, here is a wonderful list of 20 uses for honey written by Anna Brones, travel and food writer, Marketing Manager for EcoSalon, published in the Huffington Post in celebration for Honey Month! Enjoy!

20 Unusual Uses for Honey

Superpowers and parasitic cleansing? Honey, who knew?

It was brought to my attention last week that September is in fact National Honey Month. Honey gets an entire month all to itself? Why yes, it certainly does.

Turns out that Americans consume 1.5 pounds of honey per person annually, and there are more than 300 types of honey in the United States alone. That’s impressive, and we figured that if honey gets to be honored all month long, the least we could do is give you 20 different uses for it. Enjoy!

1. Put it on your lips

Did you know that making your own lip balm is as easy as tracking down some almond oil, beeswax and honey? Sure is. Makes you feel a little guilty about that $10 version you picked up at the health food store yesterday, doesn’t it?

2. Make your own honey moisturizer

If you’ve got a handful of sweet smelling herbs — think lavender — laying around and ready to be used, why not use them for your own homemade honey lotion? Warm honey over a saucepan until it gets to a liquid consistency. Pour honey over herbs and cap tightly; the ratio you want to use is 1 tablespoon of herbs per 8 ounces of honey. Let sit for a week and then mix 1 teaspoon of liquid into an 8 ounce bottle of unscented lotion.

3. Eat it with goat cheese

In need of a classy hors d’oeuvre but lacking in the time department? Try this: put a round of goat cheese in a ramekin, sprinkle honey and chopped walnuts on top and place in oven at 350F until honey and cheese are both soft. Serve with baguette or crackers and you’ll be the life of the party.

4. Prepare for the end of the world

You never know what’s going to happen, so stock it. Now.

5. Drink it

We all know a drop of honey in tea is good for a sore throat, but you can add it to most drinks for an extra energy boost. And simply because it’s a whole lot better than tossing in a few Sweet ‘N Lows.

6. Make a salad

One of my favorite and easiest fruit salads uses just a touch of honey to enhance the sugars in the fruit, and it’s a perfect late summer dessert.

  • 1 cantaloupe, chopped
  • 3 nectarines, chopped
  • 4 tablespoons chopped basil
  • 2 tablespoons honey

Mix together and enjoy!

7. Give yourself a facial

Honey is a natural humectant with antimicrobial properties, which means your skin will be happy when you give it some sweet honey love. Try a basic honey wash by mixing a dollop of honey and two tablespoons of warm water and massaging the mixture into your skin. Or you can go all out and try the Cucumber Honey Facial.

8. Go the extra mile

Forget energy bars and shots, just pop a tablespoon of honey before your next workout. Seriously, it has been proven to boost athletic performance.

9. Remove parasites

Got a post-Southeast Asia backpacking trip bug that just won’t leave you alone? Mix up a good blend of honey, water and vinegar and you’ll quickly be on your way to being parasite free.

10. Clean your cuts and scrapes

Honey can actually be used as an antiseptic, like a natural Neosporin. Because of its many antimicrobial properties, it can be used to treat wounds and even burns.

11. Get rid of your hangover

Forget a morning of popping ibuprofen, spread some honey on your toast or add some to your tea. Because honey is loaded with fructose, it will help speed up the metabolism of alcohol.

12. Clear up your dry elbows

Nothing’s worse than scratchy elbows (no really) so next time, after you’ve washed and scrubbed, rub some honey on to soften the skin. Leave on for 30 minutes then wash off.

13. Soften your skin

Honey is an excellent exfoliant. You can pair it with ground almonds and lemon juice for a killer homemade facial scrub.

14. Mix a drink

After you’ve been busy reaping all the health benefits that honey has to offer, it’s time to celebrate, and what better way than with a good ole cocktail. Honey Gin Cocktail? Bring it.

15. Eat the honeycomb. No really, just do it. 

Yes, it can be done! One of our fave food bloggers Clotilde Dusoulier, of Chocolate & Zucchini, put the ingredient to her readers and got some fun responses. The best sounding one? Mix it with crunchy peanut butter on toast.

16. Get an energy boost

Feeling a tad lethargic? Skip the coffee and go for the honey instead. Mix a tablespoon into a cup of tea and you’ll be feeling better in no time.

17. Beautify your hair

In the shower, after you wash your, coat the ends with a bit of honey. Let it sit for a few minutes before rinsing out and you’ll find that your hair is less frizzy and extra conditioned. Or make your hair shiny and bright by adding one teaspoon honey to one quart of water, and after washing your hair, pouring the mixture over your head. Let dry and enjoy your new-found shiny do.

18. Preserve fruit

Jam is so five years ago; show you’re truly cutting edge by preserving your fruits in a honey sauce. All it takes is one part honey to ten parts water and then covering your berries. Pretty much the closest you’re ever going to get to bottling up a little bit of summer.

19. Relax in the tub

Add a few tablespoons of honey to your bath, for sweeter smelling, softer feeling water. Pure bliss.

20. Lose weight

Well, what were you expecting? With a list this long it had to be pretty apparent that honey is in fact a wonder food, and as it turns out, you can even make it part of your next weight loss plan. Honey is an excellent substitute for sugar and it also helps speed up metabolism. Just remember: all things in moderation.

New Scoring for CPRS to Help Patients and Doctors

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'The development of an orchid, Adolescence,' 2011. Photo by Catherine Herrera

You might remember I started off 2011 expressing hope that CPRS patients will be embraced as partners in seeking a cure and treatment for CPRS.

It is my wish that CPRS patients no longer have to deal with such drastically uninformed, and at times, antagonistic responses from doctors facing patients with mind numbing pain levels, without any understandable cause beyond an injury that has healed but the pain has not turned off in the neurological wiring of the brain.

I have shared previously that when the symptoms traveled from my right arm to my right leg only a few short weeks after being diagnosed with CPRS, the insurance and doctors insisted I could not be seen until I was transferred to the public branch of the same hospital. I only had health care insurance through a public program for low-income people. As an artist living in San Francisco, I was unable to afford health insurance for myself and my child, and I had always been grateful for the preventative care I had received. I was even happier with the clean bills of health each year.

So, when I woke up with a what turned out to be a urinary tract infection, my health provider, as a precaution sent me to emergency since I was bleeding.  A needle inserted to draw blood hit the nerve in right arm.

My life changed forever in that instant. What followed was pain so high in my right arm that I howled through the nights, terrified by what was causing so much pain. The nights were the absolute worst, the pain too high to sleep for very long. I was prescribed painkillers and it did help put me to sleep. But, soon, it became clear the pills made me so out of it otherwise, I had a hard time staying awake when my child came home from school, me no longer able to walk him.

I could not take the pills anymore. I choose to retain the little energy that remained for my child so I could keep myself awake since the painkillers completely knocked me out.

The development of an Orchid, Adolescence,' 2011. Photo by Catherine Herrera.

I saw the same neurologist at the public hospital as who had diagnosed me in the first, private, hospital, where I had been seen in the ER when the nurse drew the blood that hit the nerve in my right arm. Despite emailing my neurologist when the leg symptoms started a few weeks later, to no avail, insurance wasn’t going to approve me seeing her any sooner.

My general provider saw me several times in those next few weeks but she was not a neurologist. Her phone calls got my appointment moved up two months, from the four they wanted me to wait.

When I showed and described the symptoms I was having in my leg, the neurologist did not agree that the CPRS had traveled to my leg. She did not so much as offer me a cane. She sent me to the Physical Therapist who sent me right back and told the neurologist he needed a diagnosis to treat me.

'The development of an Orchid, Adolescence,' 2011

Two plus years later, the same doctors not only won’t see me, they say they don’t know what I have or how I got it. They keep trying to go towards Fibromalgia which I don’t understand since I had a clear cause that incited the CPRS. In fact, the attending neurologist participated in my diagnosis and when the neurologist asked the attending if CPRS can be sparked from a needle injuring the nerve, he said it can, it has been documented previously, although, it is rare.

When my new general physician referred me this Spring to PT and Pain Management for CPRS, and instead, the Pain Management and Neurology said I was “banned” from care, I realized that I was never going to get care at this hospital in which I was injured. Had I had private insurance, I would have moved away from the entire hospital, both its private and public arm, a long time ago, but I didn’t.

I didn’t realize that the last two years have been used instead to build a case against me. I am ‘banned’ because I made too much fuss about my leg and whether it was CPRS, and because I made a fuss at being asked if I had filed a lawsuit, when, nine months later, I finally had my first appointment with a pain specialist, who did not care at all about speaking to me, in fact, she said I could leave even before we had talked. When I first asked, then, insisted that I be allowed to ask her questions about my symptoms and EMG test, she refused and I was ushered out.

When my general physician’s referral to pain management was denied again this summer, I asked to know why. I was simply notified that I had been ‘barred.’

The Development of an Orchid, In the End,' 2011, photo by Catherine Herrera.

Now, the problems with my general physician have escalated. No longer available are any of the specialists who can help, my general doctor has taken to focusing on a Vitamin D deficiency. Later, we find out the same doctor secretly noted in my Social Security Disability file that I have a ‘mood disorder’ while never mentioning this condition to me, nor to my father, a former psychiatrist, when we asked together whether my symptoms were the result of a physical or mental condition.

My doctor said to us both the cause of the symptoms were physical, not mental. Unfortunately, the doctors just didn’t know what was causing the symptoms, but it was definitely not the nerve damage to my arm. And, since that was their position, I could not have any tests or support from Neurology nor Pain Management.

I start to understand, not only will the hospital go to all lengths to protect itself, it will even lash out and lie to gain its objective.

'The Development of an Orchid, In the End,' 2011, photo by Catherine Herrera.

This last visit,  the doctor does a cursory neuro exam by touching the sides of my face, my arm, my leg, as if these are tests for CPRS. She looks at my fingernails. She ignores my symptoms of extreme migraines, nausea, debilitating pain when I walk and burning in my right arm. For two years now I have been unable to walk unassisted, and even when I do, the pain goes to such levels that I have found peace only when I don’t walk. These symptoms are ignored every visit billed to Medicare, as has happened now consistently for two years. I see the hospital trying to erase even that I was injured in their ER.

My general physician didn’t want to prescribe a wheelchair, even though I explain I am a single mother who needs to be able to get out and care for her child. Reluctantly, the doctor prescribed a wheelchair. She ‘forgot’ to send the instructions on how to or where to order the wheelchair. She apologizes, it was an oversight. When I asked during our appointment for the information, she refused and said I needed to contact the insurance provider. I called the insurance, and they don’t call me back.

The development of an Orchid, Adolescence,' 2011. photo by Catherine Herrera.

This summer, an overwhelming sadness I felt when I was told I was barred from access to care. It was truly a moment of complete loss of faith. The love of friends, and family, the reaching out to hold my hand-made the difference. I am grateful to these people because I  never experienced such a loss of faith in the binds that tie together community and the world.

I can’t say how deeply this kind of approach hurts. It’s truly one of the worst feelings in the world to have doctors, hospitals and insurance companies so coldly turn their back on care. Even when I said I simply wanted to get better, I didn’t care who was at fault, and to date, no lawsuit has been filed, still, the care is not forthcoming.

The way that I have survived those feelings has been to turn to alternative care and spirituality.

I am afraid now of doctors, and I do not trust them.

My dad was a doctor. He was a doctor from a time that perhaps I compare my care now. I have never been seriously ill before, and I just never had much experience with hospitals or doctors. All interactions prior had been good, in fact, I never even would have questioned a doctor. I trusted. And, perhaps that is why I have been so blindsided,  so unprepared for the fight that the insurance and doctors and hospitals, who know perfectly well how patients who are sick have to fight to get care, even patients with private insurance.

The development of an Orchid, In Full Bloom,; 2011. Photo by Catherine Herrera.

I thought it was because I only had San Francisco Health Plan, an initiative that seemed to me to be wonderful, and for which I was grateful. But, when I witnessed lies and delaying treatment, resorting to tactics like not returning phone calls with instructions for a wheelchair, I see a terrible replica of the same horrible insurance scam. I wonder, do these programs collect Medicare money for the services it provides, and if so, does it not have a fiduciary responsibility for the services paid for with that money?

The Development of an Orchid, Adolscence,' 2011. Photo by Catherine Herrera.

So, it is that I was happy to see an article in eOrthopod that a new Scoring System for CPRS has been developed by specialists from a range of institutions in the United States and the world. The eOrthopod article points out that, until now, patients were diagnosed with either ‘you have’ or ‘you don’t have’ CPRS. The Scoring System appears to reflect the reality of CPRS patients in that symptoms appear to not only be different in-depth and range for each patient, but to also confirm newer research that is pointing to even the uselessness of the Type I/II categories.

The Complex Regional Pain Syndrome Severity Score (CSS) will consist of a checklist of common CPRS signs and symptoms related to temperature, skin color, sweating and swelling as reported by the patient. A second section of the CSS Scale evaluates the doctor observations in exams, such as pain with prick test, changes in skin temperature, and decreased range–of-motion of the affected limbs.

The Complex Regional Pain Syndrome Severity Score (CSS) was put together and tested by experts from the rehabilitation centers, including Institute of Chicago, Vanderbilt University School of Medicine, Trauma Related Neuronal Dysfunction Consortium in The Netherlands, Rush University Medical Center in Chicago, two German universities and Stanford Medical Center in California. The article does not mention what type of experts created the scale.

'The Development of an Orchid, In the End,' 2011, photo by Catherine Herrera 2010 5 of 8

The experts believe that the CSS can accurately identify people with CPRS and the severity of their condition. With time, this system, it is hoped, will show changes or fluctuations in individual cases. eOthropod is recommending this system to improve communication among health care professionals treating patients with CPRS.

I’d like to venture to say that hopefully the Complex Regional Pain Syndrome Severity Score (CSS) can help communication among professionals and patients. This is deeply important. With so little understood about this CPRS, it’s a wonder that patients aren’t included more in the process of discovery.

Perhaps the CSS will help. However, honestly, until the medical profession starts working more in partnership with patients, CPRS can not be resolved in the haphazard way it has been addressed until now.

The development of an Orchid, Adolescence,' 2011. Photo by Catherine Herrera.

I’d like to float the idea of a CPRS Databank that all those researchers could access, into which the patient information and symptoms can be collected and evaluated for further study. This Database could also serve in registering CPRS patients injured and contracting CPRS as a result of injury at medical facilities. My case is a perfect example of how important it is that CPRS patients have some oversight into how insurance and the very same hospitals are treating or not treating patients.

I seriously do not know how a top neurologist could tell me CPRS doesn’t travel.

I believe the internet is a tool CPRS patients and doctors/researchers are already using to speed up the understanding of CPRS. In fact, I venture to guess that the increase of knowledge regarding CPRS is directly linked to our increasing global connection through the Internet.

The development of an Orchid, In Full Bloom,' 2011. Photo by Catherine Herrera.

As everyone toots the horns for medical ‘modernization’ with electronic patient records, as a patient, I have the same feeling about that system as I do about all the money being spent on new buildings while patient care suffers tremendously at hospitals. Instead, a Global CPRS Databank, can offer real bang for its buck, and bring to an entire condition to bear the resources of specialists around the world. This is particularly important given that political views regarding CPRS treatments such as ketamine stymied research in the United States, and sadly, patients asking for what is promised as total relief from CPRS are considered as hipster drug addicts in search of a rave drug.

Taking that a step further, a master Global CPRS Databank can allow for a global study of CPRS, and perhaps the identification of trends in symptoms.

Why does the CSS scale not mention nausea and migraines? These are consistently reported symptoms with CPRS. What about the skin lesions? Fluctuations in blood flow?

The CSS is a step in the right direction. However, even a cursory review of chat rooms and blogs about CPRS can show even the untrained observer that many symptoms were excluded from the CSS.

If I can, as a patient, find my symptoms reflected commonly among CPRS patients, why is the CSS  lacking the same symptoms? Perhaps the eOthopod article, geared as it is towards medical professionals, didn’t cover all the symptoms, and so, perhaps the aforementioned symptoms are included in the CSS. Yet, in this day and age, a simple daily Google alert for CPRS brings to the average patient resources that, decades ago, were not available.

Is it any wonder then that CPRS patients as a whole feel that care and response from the medical community to CPRS is plainly and simply not helpful? Doctors are stuck reading some scale that fails to take into account real, documented symptoms. They are doctors. Policymakers and Specialists, however, have a responsibility to pick up the tried and tested “common experience’ technique to bear on conditions such as CPRS and respond to patients. And, especially not to use a scale unless it takes into account patient’s experiences. After all researchers have access now though to millions of CPRS patients that can be collaborators in finding a cure and treatment.

'The Development of an Orchid, In the End,' 2011, photo by Catherine Herrera

One of the biggest problems reported with CPRS is the difficult communication between patient and doctors. Its one reason that a ‘rag tag’ approach by doctors with CPRS patients is cautioned against because the CPRS patient often develops distrust and can leave care all together.

Will the CSS instead set up doctors and CPRS patients for more tortured conversations?

The one area of focus for me as I start learning more and more about CPRS more is – why?

Why is the medical community at odds with CPRS patients? Why are insurers and others interested in characterizing CPRS as a “crazy” disease as Fox News recently reported?

I am curious to understand the forces behind the interests involved in CPRS. I have to wonder why the CSS is not exhaustive rather than limited in the symptoms it checks, and to question whether the CSS will be yet another tool to divide patients and doctors with pressure from insurers and other possible responsible parties to not make a CPRS diagnosis with expensive and, potentially life-long costs?

I believe it’s really important that patients have a resource to which they can turn to find honest answers from real experts without a stake in CPRS, either way the diagnosis. Too often CPRS becomes a battle ground with the patient trying to cope both with an illness, and trying to understand the war. It’s a frightful place to be.

I am well-educated, I can hold my own. But, what came after CPRS simply knocked me down.

First, the condition.

Then, the fight for treatment.

A fight when one is ill is just plain crazy. It’s why I had to constantly, constantly redirect my attention away from the doctors and towards myself. What I could do to help myself.

When one is in that much pain, I know, it’s not possible to fight. If you are a single parent, or low -income or even without insurance, fighting is out of reach, making it day by day is all there is, and that knowledge can make one feel very hopeless and increase stress. That’s where my mantra “I am the doctor” came from.

'The Development of an Orchid, In the End,' 2011, photo by Catherine Herrera 2010 4 of 8

It came out of praying to Creator. I just couldn’t believe Creator would leave the people without medicine and I thought about times before doctors. I thought about and was inspired by people who had taken control of their own health. Stories of people refusing to believe they had a disease and then they didn’t. Stories of healing people would share with me to give me hope when I would sob about the doctors not caring week after week that I could no longer walk.

I have still tried, when I could. To fight. I have brought administrative complaints against the insurance. When the judge believed the doctor who said I was seen by a pain specialist this summer when I wasn’t- just plain wasn’t seen by a pain specialist, but instead barred – I realized, there is not going to be any oversight, there is no one who is going to swoop in and be witness to what happened, or even care. I am just one more CPRS or other patient without access to care.

I fought within, wondering how it was that the doctors were not pointing at all to the needle, the injury that precipitated what happened. I asked my father, begged him to explain over and over again how it was the doctors kept telling me they did not know what caused the condition when the very same day I was stuck in my right arm with a needle.

As I am two years into this now, and after trying to get the hospital and doctors to be accountable, I see my original instinct was correct. In those moments when I had a clarity that only level 50 pain can bring, I realized my energy would be spent better trying to heal.

'The Development of an Orchid, In Full Bloom,' 2010, photo by Catherine Herrera.

Now, with my pain more properly managed – I can say that what I will be doing is speaking up about the way that CPRS is dealt with specifically in the United States, and how I think communication between doctors, researchers and CPRS patients can be improved. I don’t think one should 1) be hurt in a hospital, 2) be thrown out of care, 3) not receive adequate protection, nor 4) suffer the devastating economic consequences that result from CPRS.

It was 2 years before I received disability, in the meantime, we went through homelessness, extreme poverty and food insecurity. The welfare agency that could have assigned In Home Support to help my child while I was too ill to cook, clean nor do anything else, instead lied and told me until I got Social Security, I could not have in home support services.

For two years, my tweener was in-home support, on top of going through homelessness, and all the while working hard at school.

These kinds of tactics from support agencies who are also unfamiliar with CPRS is on top of fighting insurance, and the general lack of understanding in the general population.

If the CSS is going to be helpful at all, it needs to be complete by taking into account patient symptoms. When symptoms are not included in the ”official” description, but all over the internet from patients with the condition, there is a huge disconnect that is adding to communication problems about CPRS.

If doctors had a cure for CPRS, or CPRS were like so many other diseases with clear options, we’d be talking a different story I suspect.

If the CSS is going to make a real difference, it can be one of many global tools used to help CPRS patients. The kind of coordinated support needed for CPRS patients can span not just medical, but because of the overwhelming debilitating physical changes experienced by  CPRS patients, needs to include agencies like social security on the federal level, as well as, state agencies like Calworks which never should have been allowed to deny in home support to a CPRS patient over a two-year period, particularly since documentation in my case of the ongoing CPRS evaluation is there.

I have waited a long time before speaking up and out about my experience with CPRS. Frankly, I was in shock and then, the trauma of having agencies and organizations supposedly there to help, organizations up till now I had never doubted as supportive, were instead vindictive and petty and untruthful.

As a whole, it’s a trauma that my family and I continue to recover from today, going into the third year.

I believe the approach these agencies took was allowed under the current cover of “entitlement’ bashing, and its a horrible shame because behind the rhetoric are real people.

Sadly, in my case, I now must go out and seek treatment elsewhere when I finally get Medicare, in another few months. In the meantime, I push through the anger by writing, researching, learning, growing, and ultimately, taking responsibility for my own health.

I’d like to think had I had the money for stellar health insurance things would be different, but so many families will tell you a different story.

In those horrible hours of the utmost pain, I remember I would beg the Creator to understand why this had happened. I rolled through my life, I saw errors, and I apologized. I even apologized and mended with people I had hurt. As the symptoms continued, I came to understand that, emotionally, that healing had been helpful, but, it had not changed the reality of the symptoms nor the impact of CPRS on every level of my life.

When a friend looked into my pleading eyes, and said, ‘you didn’t do anything to deserve this, bad things happen to good people every day,’ I knew all I could do was try to learn from my experience, and, also, help the medical field learn too.

'The Development of an Orchid, Adolscence,' 2011, photo by Catherine Herrera 2010 4 of 8

As I go about taking accountability for myself, I will be asking it now too of the medical field.

If CPRS patients and the medical field come together, so much can be accomplished, especially with the global potential of the internet.

In those wee hours, as the light of the morning arrived, so did an acceptance that indeed I had been put here, had this experience for a reason. I am a writer, an artist, a filmmaker, I figure Creator knew that too. So, I am here now to share my experience. It takes Courage. Thanks for reading.