One of the biggest problems reported with CPRS is the difficult communication between patient and doctors

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.

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
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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….

Brighter Days

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'Purple, From My Window Series, photo by Catherine Herrera 2011
'Purple, From My Window Series, photo by Catherine Herrera 2011

A few days ago, the weather was in the upper 80’s, a nice treat for me. It inspired visions of driving a short 2 hrs to the mountains by the ocean I love so much.

Strangely though, while the warmth was soothing, old symptoms cropped up again, like the little skin blisters and itching. Difficulty sleeping too after I attempted to drop back from the medication a bit to see if these improvements with the weather could be built upon.

'Purple, From My Window Series, photo by Catherine Herrera 2011 9 of 18
'Purple, From My Window Series, photo by Catherine Herrera 2011 9 of 18

I have been doing my daily mediation in the morning, listening to Louise Hays every day to work on rewiring my brain.

I’ve had been off my right leg for many days now, so yesterday, when I went to see my child off, I felt like I was doing pretty good. Except, I felt like a failure that I could not drive him, and in the morning, I called myself lazy and asked, was I just not wanting to make the effort?

But, later in the afternoon, after an ambitious attempt to organize my room lead to excruciating pain in my right leg and arm, I realized, it was an illusion I could drive that far on my own, and back 2 hours? The pain reached that pitch that literally causes me to fall asleep. Like the pain killers used to, but, all the time.

'Purple, From My Window Series, photo by Catherine Herrera 2011 13 of 18
'Purple, From My Window Series, photo by Catherine Herrera 2011 13 of 18

A few days ago, I used dance as healer, playing a few songs that can’t help but make me want to move. My left side does most of the moving but I coax the right side as far as I can. I miss dancing sooo very much. More blisters came out, this time, on my left side. I had a blood draw two weeks ago, on my left arm, and I’ve noticed now a few subtle changes on my left side. Still, not enough to hold the left side down in a bit of dancing.

'Purple, From My Window Series, photo by Catherine Herrera 2011 16 of 18
'Purple, From My Window Series, photo by Catherine Herrera 2011 16 of 18

I wrote earlier that I was going to share more about a few of the heroes that I want to give thanks. After being turned away from the neurologists, I was feeling pretty down, and confused about this entire process. Then, in the midst of it all, and because my new GP had thought we needed a RSD evaluation from a neurologist, I finally started connecting with other people who have RSD.

I purchased a book written by Nicole Hemmenway, “No, Its Not in My Head,” about her nine-year plus journey through a very extreme case of RSD in her arm that she got as a young, soon-to-be high school graduate. Nicole eventually ended up in a wheelchair.

Nicole had traversed something few people at her age or older ever had, and as is her spirit, she shared her journey with the world in her book.

Nicole Hemmenway walks the walk daily in her blog http://blog.nicolehemmenway.com/2011/06/25/celebrate-good-times.aspx (You can get her book there too.)

I thank Nicole greatly for her courage, and her kindness.

What has been most inspiring in reading Nicole’s story is hearing about her recovery, of her getting out of a wheelchair. She gives thanks to Dr. Rhodes in Texas who has worked with many RSD patients, and others with similar conditions, to bring pain relief.

'Purple, From My Window Series, photo by Catherine Herrera 2011 18 of 18
'Purple, From My Window Series, photo by Catherine Herrera 2011 18 of 18

I spoke with Dr. Rhodes a few weeks back, and, just talking with a doctor who understands, who didn’t assume I was trying to get out of a ‘bad life’ with an illness, who did not make any judgment of me but had answers about the condition, It was Healing right there!

I have also been inspired by Joseph Martinez. You can read more about Joseph’s experience here http://www.dailybreeze.com/news/ci_18130738

Joseph is currently being seen by Dr. Rhodes. Joseph has a very extreme case of RSD because the condition came on by way of a stomach flu, so his entire body was deeply impacted since the RSD originated in his stomach.

Joseph was also experiencing the nausea that I have, and I shared with his mom that honey has been a savior for me. I take it when I go out to avoid any mishap as exertion seems to provoke severe nausea. When it was warmer, the nausea, just from eating, returned.

'Purple, From My Window Series, photo by Catherine Herrera 2011 2 of 18
'Purple, From My Window Series, photo by Catherine Herrera 2011 2 of 18

The honey immediately stops the nausea, and I am able to recover very quickly. Strangely, I have noticed since using honey for this purpose that my level of nausea has decreased overall.

‘It’s not hokus pokus,’ were Dr. Rhodes’ music to my ears. He knew every symptom I had been experiencing for the last 2 plus years, each and every one, not just 2 or 3 he read from a book.

And, Dr. Rhodes was nice. Hey yeah, he was nice. Not overly so in a fake way, but ‘understanding’ and well, let’s just say, I’ve had a shortage of understanding from doctors so I am grateful for any.

Dr. Rhodes, and the patients who have been treated by him, do not speak in any absolutes. Each case is going to be different. No promises. But, understanding, wow, that is half-way to hope right there and that’s the closest I’ve come to the type of doctor patient relationship I had always remembered until this RSD came up.

I am very excited to leave behind the past and move forward.

'Purple, From My Window Series, photo by Catherine Herrera 2011 4 of 18
'Purple, From My Window Series, photo by Catherine Herrera 2011 4 of 18

My last meeting with the new GP was also inspiring. She understood my frustration in not being seen by the neurologists, and she did say she had ordered my records from the previous place but still had not arrived. She said as soon as she had those records, she wanted to find a neurologist in SF to evaluate me. She took more blood, not sure what for, but it seems right she’s at least checking the levels so to speak. Thankfully, so far, everything else is fine with my health.

'Purple, From My Window Series, photo by Catherine Herrera 2011 14 of 18
'Purple, From My Window Series, photo by Catherine Herrera 2011 14 of 18

To get to see Dr. Rhodes, I need to find out whether I can travel and as my GP confirmed, she doesn’t want me traveling until I do have the neuro evaluation. Dr. Rhodes will work with me for five days and then, can work closely with my GP here to continue the treatment.

I am very excited that, soon, I will have some answers about next steps. If I can travel, next steps are – how? How to be able to afford to travel there, and how to afford the machine and other things that the insurance does not cover.  I know I have to get there if Dr. Rhodes can make this pain go away so I can resume my life again. Since I dreamt that I will walk again, I believe this will happen and I only need to find a way there.

It frustrates me that non-invasive approaches such as this don’t have coverage while, often other things, with side effects that can degrade health, are approved lickity split.

'Fresh Starts, From My Window Series,' 2011 photo by Catherine Herrera 2011 1 of 1
'Fresh Starts, From My Window Series,' 2011 photo by Catherine Herrera 2011 1 of 1

My limited income till now has forced me to consider alternative ways to healing. Since there is no cure, only pain management available, there is a lot of space in between that is complex and often difficult to understand, even for doctors.

I see from the RSD Canada site interesting research that shows RSD is caused by nerve damage, and there is another treatment with IV that, like, what I am learning, may be related to how much oxygen the nerves are getting, related to circulation.

There is more research coming available every day. In this day and age, it seems that its important that research be put together considering the rareness and small number of patients globally speaking. What about harder to reach places where many may get this tragic condition and face unknowing doctors too?

I am having to consider the realty again of not having the resources to get to the doctors I need. I thought Medicare would be an answer, but I see the politicians ready to punt it down the road.

I’m not even sure I will be able to cover the costs not covered by Medicare, and some days, I think about giving up on seeing a doctor at all. Talking to Dr. Rhodes helped me consider once again that what happened these last two years may recede forever as a memory, remaining only an impulse to make sure it never happens to anyone else.

In light of the upcoming budget cuts coming down in July 2011, I am now faced with a dramatic income shift.

The in-home support and benefits had made these six months bearable where before, getting food, doing laundry, were painful reminders of what I could not do. Reminders of how awful to be stuck on the 3rd floor and how little I get out at all.

The budget cuts for vital disabled services feel like another sign that I am disposable in this world. Only, I know I am not, so I must find another way.

I feel the stress, which pushes me to want to get better faster, making the month in between till my next appointment with my new GP feel almost torturous.

'June 15, 2011 Eclipse, From My Window Series, photo by Catherine Herrera 2011 3
'June 15, 2011 Eclipse, From My Window Series, photo by Catherine Herrera 2011 3

I want to travel to Dr. Rhodes and live the dream I had a few weeks back of walking again.

I am reminded by Nicole’s experience that this is a process.

Dr. Rhodes also makes sure to explain, his treatment is not a cure, its pain relief to allow for the best possible life.

'Chilly Winter Morning, From My Window Series,' 2011 photo by Catherine Herrera 20
'Chilly Winter Morning, From My Window Series,' 2011 photo by Catherine Herrera 20

Knowing that my GP is moving forward and can be part of the team in finding a solution is a huge step forward.

Dr. Rhodes said with the relief of his treatment, patients can stop taking pain medications.

Its one of the most appealing aspects of this treatment, and is a great addition to the arsenal I have been utilizing to gain the improvements I have so far: mediation, positive thinking and looking beyond limitations. I have chosen not to take pain killers, narcotics.

'Spring, From My Window Series, 2011 photo by Catherine Herrera 2011 2 of 6
'Spring, From My Window Series, 2011 photo by Catherine Herrera 2011 2 of 6

In that vein of considering creating the best possible life moving forward, I have been considering what comes next in my career. I’ve sought the support and guidance of a Small Business Counselor who is helping me address both the internal and external blocks.

I have found myself, at times, very sad that I am unable, right now, to physically lead my life as I had before. I’ve had to process this change, a letting go of the past, to be in the here and now.

I’ve also begun to consider how I can work given my physical limitations and I am trying new experiences.

I’m developing the Catherine Herrera Photography online site for sales from my photo portfolio, from which these latest images are a part.

I am now working on a cover photo for a book, which has been a delight of a project. In this assignment, I have set up the images in my studio, instead of running around on the streets.

'Humu and Jasmine, From My Window Series' 2011 photo by Catherine Herrera 2011 1 of 1
'Humu and Jasmine, From My Window Series' 2011 photo by Catherine Herrera 2011 1 of 1

I am still working on graduation photos, now several weeks in process, rather than what would have been a day to turn around before. I have to let this be ok, but it feels like a pull weighing me down. Perhaps that is why the new approach to my work is inspiring, having the advantage of a different workflow than photojournalism.

In that vein, I have started to look at writing in a new light too.

Recently, I shared with some friends that this condition’s impact on my mobility had the effect of forcing me to sit down, to stop long enough to focus on editing in a way I had not before. Also, writing.

I try to cultivate a ‘present’ moment attitude, and it is from that space that this series, From My Window, began. I’ve just uploaded new images to the series.

I also took the step of applying to the art institute to see if I can take any classes next semester. I have been encouraged by the experience of RSD patients further into the condition who often say ‘pain is not going to rule my life.’

I did not understand this entirely before, but now I do. Maybe I won’t be a student like I was before, but as I have seen so far, art, communicating and sharing my experience with others has been very healing and positive.

'When Grandma stopped by, From My Window Series,' 2011 photo by Catherine Herrera 2010 2 of
'When Grandma stopped by, From My Window Series,' 2011 photo by Catherine Herrera 2010 2 of

The internet has become an indispensable tool for the disabled, or those with illness. A lifeline that never existed before.

I remember thinking in that awful first year how dearly grateful I was to the internet. It provided needed distraction, and it provided a way to still interact on a level that was not in any way ‘disabled.’ I think that’s why perhaps so many have said they never knew what happened, or others who were shocked by the cane and walking difficulties where my voice and person was so clear here.

The internet is a source for information. It is a PIPELINE to Laughter, which became my best friend.

'When the Moon Comes Closest to the Earth, From My Window Series,' 2011 photo by Catherine Herrera 2011 3 of 12
'When the Moon Comes Closest to the Earth, From My Window Series,' 2011 photo by Catherine Herrera 2011 3 of 12

Since I did not want to start pain killers or medications that had varied results, or in some cases, recalls for off-label uses, I had to cultivate a new tool box of devices. Without the internet, my life might have been very different today.

The cold has rumbled back in, and the warm water of my healing bath each day feels divine, like a rejuvenation and soothing spa. Summer, I bring with me the smells and flavors of fruit. This week, with the left over Jasmine flowers from my photo session, the fragrance of a forest, of deep soil, and I smell health.

'When Hawk arrives and Crows come along, From My Window Series,' 2011 photo by Catherine Herrera 2011 2 of 2
'When Hawk arrives and Crows come along, From My Window Series,' 2011 photo by Catherine Herrera 2011 2 of 2

I like getting fresh mint and basil, now in season, to put around the house, to smell those aromas feels very soothing to me, and gives me an upbeat connection to nature here in this 3rd story perch.

As I contemplate a career moving forward, I must consider housing for live/work. On SSDI, my income is limited and I have had to grapple with that reality. I felt hopeless about it before, and as I begin packing and looking for where to go next, I may feel that way again, but I am trying to simply recognize it and not attach judgment.

I have looked at artist communities in different places, and even considered purchasing a $100 house in Detroit or Philly and joining other artists seeking places to survive.

'Drying Sage in Spring, From My Window Series, 2011 photo by Catherine Herrera 2011 1 of 7
'Drying Sage in Spring, From My Window Series, 2011 photo by Catherine Herrera 2011 1 of 7

But, then, California keeps a strong hold, and I wonder, is there a little plot of land for me? I guess the issue of housing, as an artist, has truly always been an issue for me since I moved out of my mom’s home. I was working on the photo series, Landless Indian, at the time I was injured. You can see the work in progress here.

I joke with my grand-aunt that I will have to learn to grow my own food and figure it out like in the old days and she sounds more relieved with the joke rather than worried as she had sounded a minute before. You see. Laughter. Best friend.

I don’t tell her I am scared.

'Drying Sage in Spring, From My Window Series, 2011 photo by Catherine Herrera 2011 5 of 7
'Drying Sage in Spring, From My Window Series, 2011 photo by Catherine Herrera 2011 5 of 7

I feel the beating down of the pressure from the social service agency, again. Now, claims that they did not know about SSDI income, which seems odd, so I have sent them the emails clearly indicating we discussed it right after my hearing, and again, when the housing social worker recalculated my income for housing based on both the ssdi and social service aid. What if in-home support is cut? These are the worries that I try to wash away with Louis Hays in the mornings to start my day, but I can’t say it’s as easy to push away in the evening.

I’ve sent proof now to the hearing judge, will it matter? I have learned over two years of these constant battles, often, its a losing one. It’s discouraging on top of the struggle to get my health back.

In speaking to the, now, several RSD patients I know, one recurring theme that jumps out at me is the need to be an advocate within one’s own community. I have provided information on RSD to the social services agency, hoping I would no longer be seen as an ‘enemy’ out to ‘take’ something. The disbelief on their part has been an added and constant burden since the first diagnosis of RSD in 2008.

I was encouraged by the results others have had in bringing greater attention to the experience one goes through after being diagnosed with RSD, and I believe in sharing with the goal, instead of punishment, of greater understanding.

'In Time, From My Window Series,' 2011 photo by Catherine Herrera 2010 1 of 1
'In Time, From My Window Series,' 2011 photo by Catherine Herrera 2010 1 of 1

I decided to bring attention to my experience to disability advocates. I did this in part because of the affinity I feel for Veterans, both as someone whose family members fought, and as a result of the afternoon I spent last spring at the Veterans building in San Francisco. You can see images from that day here.

Soon after, I read about Veterans with RSD, who had gone to Congress to share their experience with the condition, and similar tug and pull with agencies meant to help but confused as we all are by this condition.

I am always encouraged by the positive, yet, determined approach of the heroes I’ve mentioned today. What I appreciate about Nicole is her forthright understanding of the very difficult, and often, solo experience RSD brings, on top of the body ‘feeling’ hurt. She doesn’t hide that painful reality, and in so doing, makes it possible for others to see a way through.

I am inspired by Joseph for his parent’s and his courage to visit over 17 doctors in search of a cure for the excruciating pain their son was experiencing. I am rooting for Joseph and his family. I’ve heard from his mom and Joseph is doing very well.

I am someone who is in the common age group of RSD. I am older than both my heroes, still, I am without shame in saying, I am grateful to them for lighting the way forward with their resilience and faith. May they both be blessed with permanent relief from this pain.

Here’s to living in the moment.

'Presidio, 2 days later' 2010- Photo by Catherine Herrera 2010 3 of 4
'Presidio, 2 days later' 2010- Photo by Catherine Herrera 2010 3 of 4

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.