natural remedies

Yes! A new day for Letters of Courage!

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Its been several months. My attention turned towards uncovering and finding out what happened over these last few years, new information that came to light that 1) helped put things in perspective, and, 2) propelled me to advocate for change so what happened to me is different for anyone else injured at a hospital or by a doctor.

I was stunned by what I learned, but, it started to all make a lot of sense. Interviews with disability advocates surprised me in learning that many of the organizations I came in contact have ‘reputations’ and point to serious system wide problem. The problem is, we aren’t talking about defective lightbulbs. We are talking about actions that can cause life-altering disability.

The level of business intelligence, and the use of the doctor appointments to ‘gather information’ rather than help takes ones breath away.

I had to balance my general advocacy with seeking accountability and remedy for what happened in my particular case now that the facts were laid bare. As someone recently said, ‘that’s illegal!’

When the health care system is so rigged, is it any wonder there is so much illness despite the amounts spent on health care?

What the review of all the documentation showed was that while I was experiencing high, untreated pain, there was evidence and knowledge very early on in the process about the damage that had been done and that was spreading.

I had been so stupid to trust. There was no way that hospital was going to suffer any consequence, so that has meant that as the city and state agencies found my care ‘too expensive’ – I have been left to deal with treatments I can’t afford, doctors who refuse to treat me for fear of the hospital, and, without any city, state social or legal support, must ‘overcome.’

Another advocate said only the other day, more people have been hurt and disposed. It’s rather sickening from my viewpoint.

Even attempts to return back to work – paid work – have met with denial after denial by DOR.

I literally cried in the hearing. What do these people want?

To crush me because I am evidence of their liability?

Their wrath knows no bounds.

We now know that they never reported the information to the state or city agencies, which must explain why the agencies decided to say – against the medical documentation I had to fight to even be able to get the MRI’s – that I was no longer disabled (now they are doctors?) or over income or whatever little legal manuevers, despite the law, despite the facts, to make life more miserable for those who had the audacity to walk into a hospital for care and be injured.

I owe a lot thanks to many incredible supporters who have helped me deal with the realization that not only was I hurt at a hospital, but, their reach is so far, they can make my life a living hell.

I owe gratitude for those who have stepped forward to help me transform a difficult experience into a chance for growth, empowerment, and, well, learning more than I ever knew or could have imagined about sooo much! I will be sharing more about that over the next while…

For today, I want to share a few quick thoughts/tips:

A. New RSD Tip of the Day! Much of what I have learned to do to manage the RSD symptoms has come from experiment – today, I want to share an exercise that combines sound healing, touch sensitivity, and, developing the brain to limbs connection.

I have an anklet bracelet that I came across. I looked at it, and thought, ‘oh yeah, in days past!’ One day, after my exercises, feeling pretty good that day, I put the anklet on. I found — for the time I could stand having the anklet on — that I looooved hearing the beautiful music and that the music came from my arm or leg.

I liked that the music was a new, very positive way to be in connection with my right leg, and eventually, my right arm.

I liked the notion of these painful regions transformed into music machines!

As I mention, some days, forget it. Like today, I am having muscle spams in my arm that are quite insistent and repetitive. Yet, these are  days when I forgo my routine, when symptoms are more debilitating.

I find my appreciation for those good days – and sounds – only increases on those days I can make a little music!

I wonder how you will feel??

Hummingbird – Sweet Nectar, Sweet Medicine

I have written before about the connection to Hummingbird, and the ancient importance of the Hummingbird to the Native people of the Bay Area.

When we speak of ‘medicine’ – this term can be confusing. Today, ‘medicine’ is most often imagined as a prescribed cure.

Complementary and Alternative Medicine covers many of the Native healing traditions and practices, and is seen as…well, as the tile implies, complementary to Western medicine traditions. No door to healing is closed.

The National Institute of Health offers a healthy start to better understanding Native People’s concepts of health and wellness. Visit their site to watch videos and hear about the Healing Pole that now graces the National Library of Medicine!

Our community was graced with a Healing Pole, and its inspired great discussions on health and wellness.

I have tried very hard to advocate for greater cultural competence here in the Bay Area, especially at the teaching and university hospitals in this region with the third largest urban Native population in the United States.

My own experience led me to advocate for these changes.

EFT TAPPING – LOUISE HAY

I have written before about my experience with EFT, often called ‘tapping.’

Its an interesting therapy that works with the acupuncture points to help relieve emotional blocks that can cause physical ailments.

I like this therapy for a variety of reasons, and for RSDr’s, I think the option of a ‘soft’ vs. acupuncture by needle is very helpful, bringing many of the benefits without the physical pain many patients comment about after acupuncture.

I have also spoken about the impact that Louise Hay’s mediation had in my life, something I listened to and still listen most days.

I was so inspired when I saw a recent video with Louise, learning the tapping technique. She was such a down to earth person, sharing the challenges she faced, and, inspiring with her achievements in personal and professional growth.

Nick Ortner and Louise Hay invited people to share how EFT played a role in their lives by writing in  – and well, I submitted my story!

Interestingly, members of my community have begun working with returning veterans as part of a collaborative project to incorporate Complementary and Alternative treatment for PTSD.

Recently, I read that EFT is also being used to help veterans in a pilot project designed to measure and assess its effectiveness as a therapy before broader implementation.

Conclusion

Its believed that we use less than 1% of our brain capacity – still. I wonder, what new advances will we learn about the brain’s capacity to engage in the healing process?

When we look for a positive side to this experience, for me, I’ve been empowered by the healing process, and, by seeing most intimately our medical system, empowered to voice my experience, to heal, to help other people who experience a similar trajectory of care, and, to bring attention to the general need for greater collaboration between patients, doctors and researchers.

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.

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!

Amazzzing Honey!

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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.

Forward Movement

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Well, shall I say a miracle occurred?

It felt like it to me.

Perhaps that’s why today I have no photos to post, as my mind was directed to, finally, meeting with the doctors – neurologists. I now move on to a team that will include a pain specialist, physical therapist and pain psychologist so we can do more diagnostics to confirm whether I have RSD.

So, forward movement.

It feels great, and I have hope. The neurologists felt that despite my lack of balance and difficulty initiating movement when walking, there were many positive signs from a neurological stand-point.

So not RSD?

Perhaps muscular-skeletal,? they wondered. Maybe RSD,? they wondered again. Hence, the team.

I learned information too.

The first EMG had shown possible radial nerve damage in the right arm. The neurologists yesterday still didn’t have the 2010 EMG test of my right arm and leg, nor, I guess, the rest of the tests done on bone density, vit D levels, etc.

I will receive those files soon, so I can take them to my next appointment.

Yet, as far as I understood, they did not find nerve damage or muscle weakness.

When I mentioned that I had been told by the PT’s that I had nerve damage, the neurologist told me that in that type of general conversation about nerves and muscles, it’s not in way I understood.

Interestingly, the neurologist explained, nerve’s don’t hurt. If a nerve is cut, you don’t feel pain from the nerve itself. It’s the muscles and tissues.

Again, remember, I am not a neurologist, I am still only processing medical information to better understand this experience.

So, soon I will be meeting with this team to learn more.

I feel a deep relief to be moving forward.

Especially since I recently overcame my fear about whether physically I can go to school this Fall, I went to the DOR appointment anyway to begin the process.

Now, I will be working with this team to regain physical strength I need, and overcome the pain.

All this news comes too just when I have heard from the book publisher that the photos I took for my client’s cover images were accepted and just what the client wanted! It was the first assignment that consciously took into account my reality of not being able to run and do the documentary work I have before, making it possible to open up to a new way.

As a result of the experience, I am working now with my business coach to create a series of books that will be available when I give presentations or talks, and online for the wonderful people from around the internet that I meet through this great medium of blogging.

The drive and walking for my visit has left me with shaking in my right arm, pain in my neck and leg. I’m going to work on recovering from the activity to regain my physical balance, that zone where I have been able to find relative calm from the pain thru the day – as long as I don’t walk or stand too much – daily soaks in warm water, meditation (still every day for me), continuing with the food as medicine work, and creating natural skin treatments to help with the skin rashes, itching, and strange bumps.

Ok…I said no photos but here is one from two days ago. The bumps showed up about 40 minutes after a strange painfully sharp pinching in my right forearm that produced swelling.

The neurologist mentioned that its possible I might have processed the RSD differently, in a way they don’t know about yet.

I wondered if I processed it differently because, ironically, the way the process went, I never started the standard drug treatment.

I mentioned to the neurologist that shortly after I was diagnosed,  looking on the internet for alternative treatments, I came across an RSD study being done at the hospital where I was seen. I tried the experiment myself since it seemed like a better way to go then the other options, which are more invasive.

Does the medication treatment protocol for RSD cause a reaction with the RSD,? I asked. Currently, the treatments are designed to address pain but are not a cure for RSD, nor is there a generally agreed upon cause for RSD.

As the neurologists said, RSD is still little understood.

Hum, maybe I did process the condition differently.

What feels amazing is to move forward. I can now work with experts, doctors who study this condition, who will know and have access to all the newest research around the globe.

I feel very grateful, deeply grateful to eliminate the big stress of disbelief that seemed to block forward movement.

One big stress from the moment the pain started was the experience of  ‘disbelief.’ It happened right after the second visit to the ER brought the diagnosis of neuropathy, then, a call from neurology to cancel my appointment because what I had wasn’t serious enough.

I was relieved when finally, several weeks later, I was finally seen in neurology, and the attending came in with the resident to say he was ordering more tests, that RSD was the initial diagnosis.

Finally, the disbelief had disappeared.

Only, it hadn’t, it had only just begun.

To experience such traumatic pain levels and have such accusatory eyes staring back is a nightmare I wish on no one. I remember in those darkest days, when someone reached out to help me here, there, I thought about others who may not have that support, maybe not as strong as me.

It’s what made me ask the questions I have here in Letters of Courage.

In my case, that ‘disbelief’ eventually traveled down a line that impacted our lives in so many exceedingly stressful ways as the agencies I turned were also ‘disbelieving,’ pointing to ‘the tough economy’ to suggest RSD was my way of dealing with the economy. Yes, seriously.

I remember that afternoon in the ER before I was stuck with the needle, as we waited and waited, I saw the news on the tv in the waiting room. It was October 03, 2008. The economic meltdown was being announced by the reporters.

I turned away to get my son dinner in the cafeteria.

Yesterday, the first question the attending neurologist asked when she came in to consult was whether I was stressed when the whole RSD started.

I thought back. I had been under stress.

My consulting contract had ended six months before when city funding for the organization’s outreach work was cut. In fact, we were house sitting at the time, because I could not afford our rent.

I said yes.

Yet, when I got home, I realized I did not mention to the neurologist that  by the time I was seen for the urinary tract infection at the hospital, I had already had to adapt. Despite the set backs, I had been resilient.

I was in the second round of interviews for a dream t.v. documentary producing job on a 10-part series with a director for whom I had tremendous respect. Only days before, the professional camera I saved and worked 3 years to finally purchase had arrived.

I had already turned negatives into positives.

When I no longer had a car, I walked my son instead to and from school, seeing it as a good way to lose pounds, feel healthy.

I had started advertising and getting freelance assignments, was starting to earn money, and I felt certain the dark days had already passed me.

I also forgot to tell the neurologist yesterday that despite the disability, and tough economy, I already had a new client by the New Year. Despite the pain, I accepted the assignment so we able to move into a new home, in a neighborhood, close to my son’s school as I was no longer able to walk him to school anymore.

Nor did I tell the neurologist that the contract ended six months later, on the same day I was finally seen by a pain specialist, 6 months after I was told I did not have RSD in my leg.

Instead of an appointment, I was asked whether I had filed a lawsuit against the hospital, oh, and that the pain specialist would not be answering any questions about my EMG, or anything else.

I was so confused by what had happened since my GP had told me the pain specialist would answer my questions. I remember struggling on the bus trying to get home, in shock, apart from the pain, just in plain shock that a doctor would ask me such a question.

When I got home, I had to deal with the loss of my consulting contract.

I missed an important meeting for the client that day, but I had waited so long to see the pain specialist. I understood the client’s frustration, they had a show date that involved teams of performers, tickets had been sold, the show had to go on!

We lost our home two months later.

Nor did I mention to the neurologist yesterday, I had just completed a dream video commission this March that had felt like the greatest assignment of my career to date, but that required super patience from the client for the same reasons.

Still, none of those positive events, or decrease in stress as a result, have brought back the ability to use my arm and leg without pain or sparking symptoms, the more activity, the more the symptoms. It’s a hell.

I did mention to the neurologist yesterday that I have been accepted to SFAI for the Fall.

Can we just wrap this up now? Can I can get on with my life?

Nope.

The team.

O.k.

The neurologist also said I should stop saying that RSD is progressive.

I listened because ‘progressive chronic nerve condition’ is used all the time to describe RSD.

What she said, it kinda made sense to me now that I hear about people healing spontaneously, even years after having RSD.

When I got home, I wondered, why is RSD described as ‘progressive’ in so many places when it’s not true?

This seems like something the RSD medical community can agree? So that sort of description is no longer used by patients or others.

I’m no medical doctor so perhaps I didn’t understand completely myself 🙂

It was a great relief to share the news with my son, who had been there and saw what happened during the blood draw, and the terrible pain that came after, and all that happened next. The disbelief had hurt him too.

I could hear his relief. Joining up with mine.

It’s a healing, and restores faith because this experience, if anything, really rocked my faith in many things that I had granted full credit.

The team the neurologist said they are referring me is what I kept reading is standard for people with RSD.

It’s all I kept asking for, and I could not understand if the hospital wasn’t sure entirely, why did they only see me every 6 or 8 weeks? or, why didn’t they send me to the specialists two years ago when I begged? or why did the pain specialist not accept the neuro and GP referrals? or help when I went to the pain clinic to find out why the referrals were not accepted, crying, and practically, begging for help?

My mom reminded me that moving forward is good, and I give great thanks that she also called the neurologists on my behalf to ask for the neuro appointment. Special mom power she said.

Since forward movement is here, I’m going with the flow rather than looking back.

I will learn even more about RSD, and that can only lead to better understanding all around.

The neurologists scheduled an MRI, but not right away, in a few months, to me, further confirmation in what the neurologists said they saw as good information from our appointment yesterday.

So, onward movement.

Letters of Courage Archive and New Resources

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I am working to gather all the Letters of Courage posts into one archive. While I do this work, I am listening to the Hay House Radio. I enjoy the positive approach, and particularly, the focus on what we can do ourselves to build hope and happiness regardless of limitations. Right now, since I have been home bound for two weeks, I need distraction from the frustration that rises at times when I am unable to do as much.

When I started the blog in December 2008, it was at the urging of a friend, who had sat me down to face the fact that while the doctors went about the process of confirming the RSD, I was unable to work and my meager savings was gone.

Since the pain in my right arm had traveled so quickly to impact my walking, I had become unable to even get myself around. I was in shock.

It was her quick action that saved our family in that moment. Having to also battle the agency that doubted even the doctor’s letter, without courage to ask for help to survive those months, I would not have had food for my child.

I sat with her suggestion for a while. I hoped I’d get better. The neurologist had told me not to look up CRPS on the internet, she didn’t want me to become afraid, and CRPS could go away as quickly as it came on. The walking problems caused me to panic. My regular doctor kept calling the hospital to get my next neuro appointment sped up.

By December, I had to consider that there was no other option. Without family and friends sending $25 here or there, some who made larger donations, there would have been no food.

While my own doctor worked to get the hospital to see me sooner, I was left to deal with the panic myself. Utter terror had overtaken me when ‘resting up’ was not eliminating the horrific pain in my leg and arm, let alone when trying to walk. I was afraid. I didn’t understand what had happened before, nor what was happening then, nor why the neurologist didn’t think the development urgent enough to see me. I believe anyone who has experienced losing a vital ability understands that terror.

I was introduced by this same friend to a therapy called emotional freedom therapy. EFT makes use of the same pressure points in acupuncture, adding a tapping that had proved helpful to reduce fear, anxiety and stress. The therapy gave some immediate relief, and has become a very useful tool today to build  internal strength.

Yet, it was not enough to stop the symptoms and pain, and nothing was helping me walk.

I took to writing to save myself. What had been started as a necessity to be courageous and share my experience in a letter to friends, now became a way to be courageous more often in writing the blog.

While the doctor’s confirmation process dragged on into the years, writing became more about connecting with other people with similar experiences as I understood what they were going through.

I eventually learned that there were other people sharing their stories, many with worse symptoms, but all with the same type of experience.

I found courage again when at the start of 2011 I wrote that I think the way RSD is treated now leaves a lot to be desired, and started asking why.

I will soon upload the Letter of Courage archive so that people who are at the beginning of the process have access to the writing.

In the meantime, I want to share a new RSD newsletter that I just ran across called the Definitive Link Library for CRPS/RSD.

I am really impressed with the range of articles, but particularly by the author Howard Black. Mr. Black had RSD for 15 years until January 2010, when, for some reason, his symptoms began to diminish and he is now at 90% remission.

Coincidentally, Mr. Black is looking to connect with other RSD patients who have also gone into remission suddenly after having RSD for 5 or more years.

To give back to the community, Mr. Black has started the Definitive Link Library for CRPS/RSD.

Check it out for range of good articles.

Summer Treats!

Posted on Updated on

You all know the saying about the coldest summer right?

So, when it’s warm here, its lovely, and every frustration within the Golden city is forgiven with views that inspire deep understanding of the word ‘paradise.’

I was offered the opportunity to house sit for friends who have one of the most beautiful gardens in this city. It’s almost the size of a house lot itself, and in the very back reaches is a special pool.

I was doubtful about offering to house sit, since movement and use can spark symptoms, and I know now that activity has its price.

The family themselves eased my fears, letting me know that the house had been adapted for one of the family members who has MS.

Even the garden had been set up so that there were plenty of supports to make it all the way thru to its end, where, tucked in the far reaches, I saw the shining pool, custom designed for MS therapy.  My youthful pool side days growing up here in California flooded back, and I smiled to see the blue waters.

I knew the family understood my physical situation, so I felt more at ease and excited to sample an environment that had so beautifully integrated mobility enhancements into such a wonderfully warm, bright home. I was inspired, as if someone had opened a window to show me what is possible, a normal life with some modifications.

'California Coast, Half Moon Bay, Landless Indian Series, 2011 photo by Catherine Herrera
'California Coast, Half Moon Bay, Landless Indian Series, 2011 photo by Catherine Herrera

I was also happy to have a place to enjoy with my son, so much of his childhood we had spent outside, I hoped the garden would allow us an important connection that had been frayed and tested by this condition.

I was also excited to try swimming as exercise. I hate that I can not walk. I hate that I can not exercise. I do any type of movement I can at home, when I feel good, I dance, or at least move the part of my body that can, and when I feel good in the right arm and leg, I do small movements, careful to remember that building up, little by little, can be built upon for longer-term improvement.

'California Coast, Half Moon Bay, Landless Indian Series, 2011 photo by Catherine Herrera
'California Coast, Half Moon Bay, Landless Indian Series, 2011 photo by Catherine Herrera

By now, many of you might recall that into the second year, I began using warm water as a pain management technique. Over the last year, as it seems I am experiencing more ‘chills,’ the warm water has become instrumental in managing the pain in my right arm and leg, and brings relief in a way that a shower had the opposite effect, each drop burning my skin.

I also found the water temperature somehow balances out the internal temperature, bringing relief.

On caveat. I have noticed that afterwards, until I lie down again, there is a sensation of the outer side of my leg being ‘asleep’ like the circulation is not moving there, and its bothersome. This is what I feel when I  stand for too long,  when I go out, I have to ‘shake’ my leg to try to get relief. Getting off the leg is what eventually brings relief, and one of the reasons that I, over time stopped trying to force myself to walk, thinking I’d strengthen that way. The nighttime after walking or activity comes with throbbing pain in my arm and leg, and incessant nerve firings or perhaps, now I better understand, those are spasms.

'California Coast, Half Moon Bay, Landless Indian Series, 2011 photo by Catherine Herrera
'California Coast, Half Moon Bay, Landless Indian Series, 2011 photo by Catherine Herrera

I’ve wanted to try swimming, believing that all my many swimming days when I did not have RSD would add up to extra movement in the water, the opposite of the restriction I feel walking on land.

Last summer though, as I prepared my application for the local YMCA, and started doing small exercises to prepare to swim, the activity upped the symptoms in my right foot, provoking the sensation of a broken foot with each step, and a near 3 months almost entirely home bound.

FRUITY ANTI-OXIDANT FLAVORS!

Strawberry Healing Waters'  2010-  Photo by Catherine Herrera 2010
Strawberry Healing Waters' 2010- Photo by Catherine Herrera 2010

Speaking of healing waters! Don’t forget that summer is a great opportunity to combine fresh fruits – high in antioxidants – and other supporting herbs for a healing bath. I have recently read research that shows how the skin in involved in chronic pain, and perhaps this points to the various skin reactions of people with CPRS, the ‘burning’ sensation, and other skin issues that develop for chronic pain patients. If I understand correctly, the skin symptoms may be an indicator of pain, rather than as a symptom of pain. Read the full article here to learn more. Taking in mind what I read, I wonder if I am inadvertently nourishing my skin, and hence decreasing symptoms by adding these anti-oxidant elements to my baths. Worth a try.

'California Coast, Half Moon Bay, Landless Indian Series, 2011 photo by Catherine Herrera
'California Coast, Half Moon Bay, Landless Indian Series, 2011 photo by Catherine Herrera

So, a year later, and a pool right in the back yard, a yard where I could sit with the trees and birds and sun, I felt blessed for a break from the little 3rd floor studio from which I rarely venture, I felt blessed.

Before arriving at their house, I had to figure out how to get my son home from camp, located about an hour and a half away. The camp had arranged a carpool there, for which I was grateful. Yet, I had felt so useless as a mom to not be able to take him, to not be able to enjoy an activity we always had, driving through beautiful California, exploring together this great land.

'California Coast, Half Moon Bay, Landless Indian Series, 2011 photo by Catherine Herrera
'California Coast, Half Moon Bay, Landless Indian Series, 2011 photo by Catherine Herrera

So, I set all my sights on going to pick him up. I couldn’t wait for him to see the garden and pool too. I spent a few days preparing physically, resting up. It was a beautiful day. Warm, which helped a great deal, as for me, the warmth seems to make it easier, movement wise.

'California Coast, Half Moon Bay, Landless Indian Series, 2011 photo by Catherine Herrera
'California Coast, Half Moon Bay, Landless Indian Series, 2011 photo by Catherine Herrera

Already having driven over an hour in unexpected stop and go traffic nearly the whole way instead of the cruise-controlled, gentler-for- my leg ride I envisioned. I was late too which stressed me. I should have stopped and done a quick EFT which immediately helps lower stress and has become a valuable tool for me.

'California Coast, Half Moon Bay, Landless Indian Series, 2011 photo by Catherine Herrera
'California Coast, Half Moon Bay, Landless Indian Series, 2011 photo by Catherine Herrera

My teen son was happy when I drove up, dusty and tired, but happy. He jumped in the car with ‘I hope to come back next year too’ which was a good sign he had a positive, healthy experience at this new camp. Yet, quickly, as I wanted to know everything he had done, before I knew it, he remembered he’s not supposed to not like his mom, and the conversation ended with ‘I hate you.’

'California Coast, Half Moon Bay, Landless Indian Series, 2011 photo by Catherine Herrera
'California Coast, Half Moon Bay, Landless Indian Series, 2011 photo by Catherine Herrera

I tried to push back the sense of being unappreciated, and tried to remember I could be purple and my teen probably would find something to hate in his parents. The bull and the lion. We quickly were done with our mutual fit, and we went on down the road towards the late setting sun along the coast.

I had driven this road so many times, it was familiar and felt like home since I had known it most of my life.

Before jumping back on the road, we stopped for a bite to eat which was nice for about 10 minutes before texting interrupted and we were two generations at odds as to what to do with such a beautiful moment in the here and now.

'California Coast, Half Moon Bay, Landless Indian Series, 2011 photo by Catherine Herrera
'California Coast, Half Moon Bay, Landless Indian Series, 2011 photo by Catherine Herrera

I realized just how close we were to the spot where my grandpa had always taken us each summer. I decided to share that special place with my son, stopping so he would know it too.

Sitting there with him, in the presence of the spirit of my grandfather, I knew that we had come through so much these last 3 years, so many changes that RSD brought, requiring us to become stronger in other ways, to grow closer in new ways. In my next post, RSD and Parenting, I will be sharing a bit more about this experience we’ve had and what I’ve learned.

The journey seemed to bring us back together for a brief moment, before he made it clear that it was already an hour and a half later, and he wanted to get home, he was tired and wanted to connect with his friends.

We set out on the return journey, now with no traffic, cruise control the savior. Time with my son, a reminder of normal like before. A reminder of what we lost, and what we’ve gained.

The sun kept shining the next day, now, at the house sitting, the garden my new den. The sun didn’t take the pain away, but it felt like a soothing hand. The birds, the breeze, the trees, they sang to me and helped ease the pain and connected me to a deeper truth about how fragile life is, how quickly time passes, how we are a grain of sand rolling in the ocean of time.

A day later, when I read that the health plan had rejected the request for a wheelchair, this time, because ‘there was no diagnostic testing to show’ I needed the chair, there was no proof I needed the chair.’

I began to feel an overwhelming sense of futility. It was like a kafka nightmare. I realized no one is really going to care whether I get treated, or whether I am seen by a neurologist. No one worried whether I was going to be able to have a better quality of life with RSD.

Perhaps it was the visit to the generational spot of our family, there on the coast, or perhaps it was simply accepting that my experience is like so many others that no one cares about either.

I came to face my own temporal existence in the world. To consider the future, what is left to me, and how I will live that life. The experience had the effect of pushing me to come to terms too with the change in my body that is there 24/7, when I wake up, and when I go to bed, and to recognize that I am different too.

Its perhaps what has lead me to become more vocal in ways I might not have before, perhaps because I now have experienced things, and I feel that its important I add my voice to respectfully asking for change.

There, at that spot on the coast, I had time to give so much thanks to my ancestors and to life, to this land, to our country, to my family and all those people who have shared so much with me on this journey, for all the people I came in contact, or got to know, or grew to love, and even those, who later drifted away, or from whom I ran.

I use meditation to work towards acceptance and forgiveness, and pray, that one day, things will change, a cure for RSD, cooperation on research, diagnosis and treatment, and a change in how RSD patients are treated.

What I learned while house sitting, laying down, not moving in my little studio was masking what having a huge house and garden to walk showed.

My symptoms increased steadily each day I made my way thru the house, and the swelling in my right arm started again.

Swimming, despite the most luxurious feeling even when not using my legs, brought swelling in my left forearm, and skin rashes sprouted up again. After another week of pushing myself so my son could get to camp and back each day for a week, both my arms are swelling, and the terrible burning that I had been able to calm, has come back in both arms.

Today is my birthday, and despite my plans to go out this evening, even for a brief moment to wish a friend well on her way to graduate school, or to go sit to see another friend’s film, I realize, that’s probably not going to happen.

As the symptoms spread, I work hard to keep down my panic. I feel my attention turning again to the doctors, why isn’t the new neurologist calling, is this going to happen again?

I saw my new doctor again. She mentioned that the last place had not recorded all my symptoms. This did not shock me. I have the photos to show the symptoms they said they never saw. I began taking the photos when the first blister developed that left a crater in my right arm, just below where the needle had gone in. As the delays continued, I wondered, if the doctors keep sending me home and telling me to come back in six weeks, what symptoms do they see? I am never asked what my symptoms are, nor asked to record them. I have any way.

My new doctor has referred me again to a neurologist, a 3rd attempt to see a neurologist, to confirm what she believes is RSD. I pray they will finally see me.

This time I was referred to a neurologist outside the city. My first referral sent by my doctor was not received. The second fax was, and my case is being reviewed, they’ll call me in 5 days.

Its been a week. I work at pushing away the worry, besides, there is only one neuro specialist there now so it might be a while still.

I turn again to my meditation, ‘I am the doctor.’

I turn to this meditation not just to spark my own internal healer, but, also, as a protective mechanism to the wait, wait, waiting.

I also use the EFT too, to strengthen myself.

So, I continue to wait for the call. I’ve been trying to get to a neurologist since April.

In the meantime, I am trying to find a new balance, to bring the symptoms down again. That means being home bound right now, using the arms as little as possible, walking as little as possible…and its hard for me to accept.

Writing and connecting with people thru the internet is a lifeline. I can start to see a line ahead towards crafting a new life, even if RSD is confirmed.

I have been watching Youtube videos about CPRS, well, really, people’s stories about how they have healed, others sharing their symptoms, helping each other by sharing hope, by making connection.

''Ascension, From my Window Series,' 2011 photo by Catherine Herrera 2011
''Ascension, From my Window Series,' 2011 photo by Catherine Herrera 2011

Regardless of any challenge any of us may face, we all need connection to lead healthy lives.

I am deeply grateful to the family in whose home we stayed, for giving us the space to reconnect to each other.

And, to that special place on the coast, I am grateful for the connection with those ancient cycles of life, just as vital to human development today.

I left the house very inspired to move ahead in life, to do the best I can, with the abilities I do have, and to strive to overcome limitations.

I was inspired to reach out to the Department of Rehabilitation about attending art school in the Fall since I was accepted in June. My recent flares have worried me though, will I be able to go? Will doing so only cause a relapse of the torture of the very worst symptoms?

I’ve had to soak twice a day lately. I am adjusting my food to add even more healing, pushing back a cold, which seems always at the ready these days.

I wait. Doing the best I can in between.