Its been several months. My attention turned towards uncovering and finding out what happened over these last few years, new information that came to light that 1) helped put things in perspective, and, 2) propelled me to advocate for change so what happened to me is different for anyone else injured at a hospital or by a doctor.
I was stunned by what I learned, but, it started to all make a lot of sense. Interviews with disability advocates surprised me in learning that many of the organizations I came in contact have ‘reputations’ and point to serious system wide problem. The problem is, we aren’t talking about defective lightbulbs. We are talking about actions that can cause life-altering disability.
The level of business intelligence, and the use of the doctor appointments to ‘gather information’ rather than help takes ones breath away.
I had to balance my general advocacy with seeking accountability and remedy for what happened in my particular case now that the facts were laid bare. As someone recently said, ‘that’s illegal!’
When the health care system is so rigged, is it any wonder there is so much illness despite the amounts spent on health care?
What the review of all the documentation showed was that while I was experiencing high, untreated pain, there was evidence and knowledge very early on in the process about the damage that had been done and that was spreading.
I had been so stupid to trust. There was no way that hospital was going to suffer any consequence, so that has meant that as the city and state agencies found my care ‘too expensive’ – I have been left to deal with treatments I can’t afford, doctors who refuse to treat me for fear of the hospital, and, without any city, state social or legal support, must ‘overcome.’
Another advocate said only the other day, more people have been hurt and disposed. It’s rather sickening from my viewpoint.
Even attempts to return back to work – paid work – have met with denial after denial by DOR.
I literally cried in the hearing. What do these people want?
To crush me because I am evidence of their liability?
Their wrath knows no bounds.
We now know that they never reported the information to the state or city agencies, which must explain why the agencies decided to say – against the medical documentation I had to fight to even be able to get the MRI’s – that I was no longer disabled (now they are doctors?) or over income or whatever little legal manuevers, despite the law, despite the facts, to make life more miserable for those who had the audacity to walk into a hospital for care and be injured.
I owe a lot thanks to many incredible supporters who have helped me deal with the realization that not only was I hurt at a hospital, but, their reach is so far, they can make my life a living hell.
I owe gratitude for those who have stepped forward to help me transform a difficult experience into a chance for growth, empowerment, and, well, learning more than I ever knew or could have imagined about sooo much! I will be sharing more about that over the next while…
For today, I want to share a few quick thoughts/tips:
A. New RSD Tip of the Day! Much of what I have learned to do to manage the RSD symptoms has come from experiment – today, I want to share an exercise that combines sound healing, touch sensitivity, and, developing the brain to limbs connection.
I have an anklet bracelet that I came across. I looked at it, and thought, ‘oh yeah, in days past!’ One day, after my exercises, feeling pretty good that day, I put the anklet on. I found — for the time I could stand having the anklet on — that I looooved hearing the beautiful music and that the music came from my arm or leg.
I liked that the music was a new, very positive way to be in connection with my right leg, and eventually, my right arm.
I liked the notion of these painful regions transformed into music machines!
As I mention, some days, forget it. Like today, I am having muscle spams in my arm that are quite insistent and repetitive. Yet, these are days when I forgo my routine, when symptoms are more debilitating.
I find my appreciation for those good days – and sounds – only increases on those days I can make a little music!
I wonder how you will feel??
Hummingbird – Sweet Nectar, Sweet Medicine
I have written before about the connection to Hummingbird, and the ancient importance of the Hummingbird to the Native people of the Bay Area.
When we speak of ‘medicine’ – this term can be confusing. Today, ‘medicine’ is most often imagined as a prescribed cure.
Complementary and Alternative Medicine covers many of the Native healing traditions and practices, and is seen as…well, as the tile implies, complementary to Western medicine traditions. No door to healing is closed.
The National Institute of Health offers a healthy start to better understanding Native People’s concepts of health and wellness. Visit their site to watch videos and hear about the Healing Pole that now graces the National Library of Medicine!
Our community was graced with a Healing Pole, and its inspired great discussions on health and wellness.
I have tried very hard to advocate for greater cultural competence here in the Bay Area, especially at the teaching and university hospitals in this region with the third largest urban Native population in the United States.
My own experience led me to advocate for these changes.
EFT TAPPING – LOUISE HAY
I have written before about my experience with EFT, often called ‘tapping.’
Its an interesting therapy that works with the acupuncture points to help relieve emotional blocks that can cause physical ailments.
I like this therapy for a variety of reasons, and for RSDr’s, I think the option of a ‘soft’ vs. acupuncture by needle is very helpful, bringing many of the benefits without the physical pain many patients comment about after acupuncture.
I have also spoken about the impact that Louise Hay’s mediation had in my life, something I listened to and still listen most days.
I was so inspired when I saw a recent video with Louise, learning the tapping technique. She was such a down to earth person, sharing the challenges she faced, and, inspiring with her achievements in personal and professional growth.
Nick Ortner and Louise Hay invited people to share how EFT played a role in their lives by writing in – and well, I submitted my story!
Interestingly, members of my community have begun working with returning veterans as part of a collaborative project to incorporate Complementary and Alternative treatment for PTSD.
Recently, I read that EFT is also being used to help veterans in a pilot project designed to measure and assess its effectiveness as a therapy before broader implementation.
Its believed that we use less than 1% of our brain capacity – still. I wonder, what new advances will we learn about the brain’s capacity to engage in the healing process?
When we look for a positive side to this experience, for me, I’ve been empowered by the healing process, and, by seeing most intimately our medical system, empowered to voice my experience, to heal, to help other people who experience a similar trajectory of care, and, to bring attention to the general need for greater collaboration between patients, doctors and researchers.
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.
I’ve learned that apparently no one can find the MRI done on me two years ago. In fact, it was December 2009, a sudden appointment with neurology, I believed I was finally going to get help.
That was a joke. I got a phone call on a Sunday evening from the lowest doctor on the rung, telling me ‘you’ll get better.’
I don’t want to think back to that moment now that I have, it makes me sad.
Now, they say they can’t find my MRI. Oh, yeah. right.
I go back over the last year since I was told that the first hospital was ‘off-limits’ to me in December 2010.
I remember driving home with my Dad, in shock that my doctor had said that to me. I was crushed.
I was reviewing some old correspondence in my year-end cleaning. I came across emails I had forgotten. Twice, Stanford lost the first referral from my GP.
I was so distraught at the time, it seemed like more of the same from the first hospital.
It took my mom calling to ask that Stanford see me. They finally agreed. When the specialist said he knew exactly what happened to me, and told me about a patient of his in England who had just started Graduate School, I felt so hopeful. The nightmare was over.
Then, my medical files from the first hospital were ‘lost.’
No one could find the file I sent by email even though the file never bounced back.
I kept calling, I sent it over and over by email as they asked me to do. I even sent it by registered mail in time for our meeting. But, they didn’t want to talk about the MRI.
At all. Now, the MRI is lost.
I think back to the last appointment. I was told that I was ‘rude’ because I kept calling, and was anxious, that my medical file was lost.
I was told if I ‘do that again,’ I will be prohibited as a patient. Again.
Now, my MRI is lost, no one knows where it is. You can guess I’m not about to call to try to find out.
Ironically, since my dad is a doctor, I sent him the same medical record, and he reviewed the MRI himself. In fact, we talked with them about the MRI, and what he had seen on the MRI, in the meeting.
I mean, I was asking them if they didn’t want to perform even 1 (one) test at all???
Of course, what am I to do now? I can’t call chasing down my own MRI, otherwise, I might be ‘banned’ from the specialists.
Another symptom that has been spiking recently is the incessant pins and needles and itching. Its awful when it spikes at night, making it hard to sleep.
I’ve talked enough on this blog about how I’ve used the warm water (sometimes, hot) as a method of pain control and management.
Over time, I’ve added and experimented with various herbs. I’ve added ginger for inflammation, honey for soothing skin, lavender for relaxing, Epson Salt, and even various anti-oxidant fruits.
This month – Oatmeal!
I’ve added Oatmeal to see if it helps calm my skin in general, or if its more of a ‘spot’ treatment. Since the itching is often worst at night, I may just have to try a late night Oatmeal soak.
So far, I still had itching last night, but I’ve found relief during the day with the Oatmeal soaks so give it a try if you are so inclined.
Well, it has been a year of little progress on the treatment front. And, as I said, we’ve just lost our housing subsidy. While the delays piled on, lost referrals, lost records, lost MRI’s, a whole year has passed, and I am no closer to knowing what is going on or how to access treatment.
I hear people in my RSD support group talk about the testing and treatments, but none of those things are ever offered to me. I called an expert to find out if he can talk to my GP to find out what is going on.
Through prayer and alternative treatments, this year has been a HUGE gain. Spiritually and emotionally, I am a lot stronger within than last year feeling crushed when I was told in Dec 2010 that treatment access was never going to be offered at the first hospital.
The trauma of the last 3 years, of having a medical system that not only hurt me, but pushed me under the rug, attempted character assassination, gathered intelligence rather than help me, the entire experience was a huge lump that sat within me.
It’s a trauma I’ve never known.
It opened my eyes to the Tragedies in Health Care occurring every single day.
Even today, I hear about another woman with RSD who is losing her housing.
The other night, my son brought me to a bawling mess.
He shouted, ‘if there is a Creator, how did he let something like what happened to you happen?’
Alone, in the dark of night, I looked up to the sky and asked Creator, ‘how can we restore my child’s faith? Please help me because I do not have an answer for why this medical system has been able to get away with what it has.’
This horrendous process, from the moment I got hurt up to lost MRI’s today, has shaken the faith of a woman who was embarking on the job of a lifetime, and a 10-year old who watched mom get stuck in the arm with a needle, heard the bear cries into the night, and saw as the rest of our world came crashing down when soon I was unable even to walk. He saw what the medical and legal fields offered by way of help.
The alternative healers worked on me to remove that trauma so that I can grow strong again. Where every visit with the hospital was soul crushing, the work with the alternative healers offered positive discussion with the illness, and sought to mediate the damage of the trauma on my spirit and emotions. I must be strong so I can prove to my child.
I pray to the Creator to please help me restore my child’s faith in this New Year.
May you have pain-free days and walk a good road towards healing, and arriving at peace.
Happy New Year!
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.
I was very sorry to learn that no new tests of any kind, I was told, were warranted.
I was also told I was rude.
And, told I was rude to the staff when I tried, for over a month, to locate my own personal medical files which the hospital had lost a month after the email was received.
I was told to send it again, but the email now bounced, over and over and over again.
I was already feeling a chill. Like the hospital where I was injured, a coloring of the situation had been set in motion and I was not asked to contribute to the landscape of understanding.
That’s not an easy place for me.
I was told we were starting from a fresh slate, and yet, still, there were no new tests. The one EMG scheduled at the new place was cancelled because an EMG had been done previously, almost two years ago now.
I was not asked about my symptoms, and was continually told my symptoms were on both sides of my body despite repeatedly trying to share my experience rather than the one painted in swaths on me.
I felt like the whole world of medicine and technology, boasted about and claimed as our advantage, completely cut off to me.
Another moment in this process with CRPS that makes me wonder, what exactly is going on with this condition? Why is there so much hostility to questions?
Why did the doctors seem shocked I knew about ipsolateral spread, or that I would ask why ipsolateral spread was not a reasonable consideration.
All questions or inquiry was missing.
This stunned me when so little is known about CRPS.
No one asked me anything about my experience.
Instead, I was threatened of losing access to care, again.
This time, because I had called so many times to try to track down my records the hospital lost. The staff had found me rude.
No one said it was rude to lose the files, or, for all the bounced emails when I resent the files again, and, again, and again. Like they didn’t have any other way of getting the files?
Of course, no one says its rude that I got hurt in the first place. Or that I was asked whether I filed a lawsuit rather then the doctors asking themselves whether a spinal block was necessary.
Being threatened again with ‘bothersome patient’ for wanting to be a collaborating partner, to be treated like an adult – which I am, by the way – and, be informed about what’s going on, to have access to the technology and tests that I read about in the journals, was more than I could handle.
Is this for real? What makes this acceptable medicine?
I am told that I should have taken the anti-depressant prescribed to me — even before the diagnosis had been complete — which was pulled the next year after a lawsuit in 2009 for excessive off-label use.
I asked why the doctors didn’t want to study me since I had not gone to pain killers right away, and, is it possible those drugs, in fact, make the CRPS worse?
As my father said on the way back home, ‘they don’t care what you have to say.’
The unfairness of having been hurt by the venipuncture wound, having them lie about what happened, and now, I can’t even be a part of the process? What I have to say doesn’t matter?
I guess not. I was hurt, put through a horrendous process, so why would anyone treating this illness, or who creates policy, want to know what happens to the patient in the US who suffers a venipuncture wound at a major hospital?
Of all the elements of CRPS treatment, the one most covered by insurance is Medication.
One of the other pain centers sends a long form with all kinds of warnings about pain medications, and how, even before being seen, patients will be put through a database, and on and on, and I wonder, what?
So, people hurt at hospitals, suffering extreme pain, now become drug suspects?
I don’t use painkillers and I don’t want to. I have rejected any narcotics. Why do I want to go into a situation where, off the bat, the entry door to help is submitting to a drug check?
It says the same thing as being told at my age to ‘bring my father.’
I didn’t ask to come into this RSD world. If I hadn’t been injured, maybe it would have been easier to get to a place of acceptance, if it had been some bad luck, but it wasn’t. It was the action of hurting my nerve during the blood draw, and the delays of months in treatment, and in fact, the utter denial of isolateral spread that led to further break down in the patient-doctor trust and care.
I’ve never been evaluated for a spinal unit or any other possible pain blockers. I am told, I must first take the Medication.
The doctors know that my insurance won’t now cover mental health support, nor a specialist RSD PT. They know that potentially two out of three treatment pillars won’t be available to patients who can’t pay for it on their own.
I asked if they understood that I would not be able to access those services.
No one says that’s rude.
It simply breaks my heart the approach and process CRPS took in my case. I cry when I think back to all the positive experiences I had with doctors before this condition, before I was suddenly on trial for an injury, and my body accused for it’s reaction to the injury.
I read this week about a man who had the very same thing happen to him that happened to me. A blood draw during which his nerve was hit, and just like in my case, the nurse continued to draw blood after the injury.
In my case, the state investigator refused to interview the witness who saw that two vials of blood that were drawn, nor to the attending physician who initially diagnosed the venipuncture RSD. Instead, the investigator took the hospital’s word. She laughed at me and said the RSD must be my age since she had never heard of a needle doing what happened to me. She said my records showed, incorrectly, that I had taken drugs, pain killers. I offered to have a notary count and certify that I had not taken any of the pain killers originally given to me.
This was the state! I felt I had no recourse. In fact, the state investigator said I didn’t have any recourse to their ultimate finding that nothing happened to me. Erased.
I couldn’t fight anymore on my own.
I was tired, from the RSD, from the pain, from not being able to work, from being tossed out when I could no longer afford the rent, told we had 2 weeks.
The man I read about who developed CRPS following the nerve damage from the venipuncture wound had experienced the same thing.
The man’s attorney called the case a ‘David vs. Goliath’ trial against the hospital for the award of $2.5 million dollars.
I think about the bright, well-educated and prosperous S.F. attorneys who laughed at me when I tried to get help, who said there was no way a needle could cause the damage that I had experienced. Those laughs, I would find, were pretty tame in comparison with the many accusations, not only that I was looking for pain killers, but, a way out a bad economy.
My way out of the bad economy 3 years ago had been the producing job I had been referred by a professional colleague and for which I had made it to the second round when the venipuncture wound happened.
Where before I had not been involved with hearings and medical rights, suddenly, I would show up now as on the records defending my access to health care, needing ssdi and calworks.
Not my idea of success.
The investigator didn’t say anything when I told her I didn’t take pain killers. No laugh. No apology.
The one thing to come out of the appointment with my doctors was a prescription for 12 weeks of physical therapy with mirror box therapy, 2x a week.
I was surprised to hear they did not think a specialist PT in CRPS was necessary.
So, the search for a PT begins. Below, I offer some tips on how to find a good PT for CRPS.
Right now, I face daunting housing challenges I feel entirely incapable of handling. I struggle to hold on to faith.
Yesterday, I had a meeting with a disability specialist to see if there is any way I can find another apartment, on the first floor, so I can try to get out more often, to keep pushing myself.
Even after three years, the doctors said the other day I should not have a wheelchair as I might become dependent on the wheelchair.
I was upset and said ‘but, it’s not you who can’t get out to get to the store or out with people!’
I felt embarrassed to speak so directly, or to let my emotions get beyond me – to be emotionally unintelligent.
Say nothing of being dependent on an in-home care worker for groceries, laundry, and the limited options of going out every day to try to walk. No one seems to care.
After a year, and numerous attempts to get the appropriate paperwork from the local paratransit service, I was finally been approved for more taxi script so I can try to get out more often by taxi, and not have to fear how to get to and from home, especially those days when every step can be so excruciating.
If I share with you the challenges of finding affordable housing for disabled people in a large city today, I will not serve my goal of being positive. And, I want to be positive.
Ironically, most disabled housing is often with senior housing which don’t allow children. And, yet, I was told today that most likely we won’t continue to receive help with rent because my son is away at school during part of the year so we are no longer considered a family.
I felt so discouraged. I had no idea the challenges of disabled people. I know that part of this journey is seeing what I had not known of previously, yet, often it’s so overwhelmingly difficult to view, I am often speechless.
I am grateful to friends who each contribute in their own way to giving me faith, to help me hold on to faith in the face of overwhelming and daunting challenges.
If I think about disabled housing from this new vantage point. Its now very important for me to have a home that is also within a community, with access to the needs of daily life, interaction with people of all ages.
Now, where I live and how I live becomes really important. Before, a car and gas money and physical strength in my right leg made possible visiting with friends in so many places.
Physical Therapy and American RSD Hope
I started physical therapy last week. I was so anxious to get started, I went to the PT in the building with my GP. I asked whether the PT had experience with CRPS, which he said he did but had not treated anyone with CRPS. I could tell the PT was a great trainer, the gym offered many items like a bike and weights and mats. Still, when we didn’t start with mirror box therapy, I was a bit concerned. The PT said we weren’t going to worry about the CRPS.
Its been warm out lately, which is always good for me. It’s already November and still, I can sleep often with the windows open, a rare treat where usually the winds and chill blow through at this time of year. I felt pretty strong at the first appointment.
I have been able to get to a point now, from limited activity on the limbs, where I have beat back the daily excruciating burning and deep pain, and enough days that my brain has begun to consider myself starting to heal, like I have made improvements.
Walking and use of my right arm are the activities that I can not seem to master, jump the blockades if you will.
I was in more pain after the first day of PT, but I thought, NO PAIN, NO GAIN, right!
By the day of the second appointment, the pain and lack of movement were pronounced just getting to the PT. I was embarrassed to cry through most of the appointment, and remind the PT that I was not on any pain killers.
When the blisters appeared and swelling started to spread over to the left side after the second appointment, I knew I had to face that I had acted too quickly, and needed to take the time to find a specialist PT.
I was also concerned that the PT’s assistant had wanted me to sign a paper stating that Medicare had an annual cap of 15 physical therapy appointments a year, which they do, yet I knew that 15 sessions was already fewer than what had been ordered by the doctors. I felt the stress of having to deal once again with explaining the condition to more laughing faces. I shuttered.
I found this great site American RSD Hope which provided many answers to the stresses of these questions. The American RSD Hope site has a great section on how to choose a Physical Therapist, and the importance of finding a PT who not only has heard of the condition, but who has treated at least 5 patients.
Admittedly, the bored huffing of the PT frustrated by my performance by only the second PT appointment convinced me that I had to admit that the trauma of speaking with unknowing faces from doctors for 3 years has produced a strong counter-reaction in me that makes it hard to stand any longer being in such a situation.
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.
Some days, I simply can’t work through the issues of sustainability, which only exacerbates the stress I place on myself. If this is in my brain I reason, I must be able to turn the CRPS switch off.
I must get on with my life. A drum beat to get back on my feet.
The fear of not being able to provide for one’s family when disabled is to a degree I thankfully did not know before. Yes, as an artist, it’s always been tough, but each day you can hit the pavement is a chance to change things around.
The challenge while disabled is much more overwhelming that I could have imagined.
When I read about a recent study that there might be a ‘fear’ element to using limbs after the onset of CRPS, I find myself feeling again a disconnect from people who study this condition.
If they only knew the fear that comes from losing one’s ability, and in the process, all the other overwhelming aspects that come with CRPS.
The Fear of Using My Limbs is the least of my Fears.
In fact, I dream of walking. I daydream myself dancing, walking, living a life again, to make it out to the social events I am invited rather than sitting at home.
It’s not the fear of the pain, it’s the actual pain that pushes back even the best of my intentions.
Mind blowing, scary levels of pain that will make anyone sit down rather than walk to have the pain stop.
As I sat soaking my limbs and body after the two PT sessions, I had to recognize the deep sadness I feel to not be able to go out socially as I have done my whole life, or to be able to set out myself, or with family, on an adventure.
I’ve promised to attend so many things, and yet, in the moment, I recognize the reality of what going out means. Several days to recover from the pounding pain from standing on my leg for any length of time, or dull, deep pain in my leg and arm, and then, the burning.
So, I have to measure, in the moment, what is doable.
Empowered by the physical therapy and wanting to just push through the pain, I tried to move around and organize boxes of my work and our family memorabilia.
I was shocked to see my wrist swollen so large and so quickly.
I was shocked to see how quickly I was back in the tub soaking to warm my body and try to tame the burning in my right arm, the severe stabbing pains in my right leg.
All my natural responses to fight through the pain – ‘No Pain, No Gain’ – the motto that inspired me to swim 5x a week in college, and walking and dancing for fun as an adult – does not help me now.
As the RSD resource explained, with CRPS, it’s the opposite,
‘NO PAIN, GAIN FOR CRPS PATIENTS’
Meditation Mantra – ‘I am the Doctor’ – What does this mean?
I meditate on letting go. Letting go of feelings of lack, of lack of understanding and support from the doctors, working to let go of accusations.
In the meeting with the doctors, I sensed they believed that my mantra ‘I am the doctor’ is literally my belief — like I am a doctor.
No. I do not think I am a doctor.
‘I am the doctor’ was a healing mantra I started using to try to activate any and all possible healing mechanisms and energy I possess within my own body.
In today’s terms, I guess this belief can be termed a healthy mantra for ‘taking responsibility for my own health.’
Faced with doctors who do not have consensus, let alone a cure for CRPS, and considering the lack of access from the start after the Venipuncture RSD diagnosis originally, the long journey of 3 years to a specialist that was located a mere 30 minutes away from my home, my sanity demanded that I not come home crushed every time I saw those blank faces staring back.
The mantra was my defense.
A healing meditation to retain and strength my mental health, and in the process, my physical health.
HOLDING ON TO FAITH
I must balance the desire to walk with the reality, balance loss and gain, have faith.
I am also working hard to accept the amazing support and abundance in my life, even when I feel so hopeless sometimes. To focus on the positive aspects of my art business which is starting to see some positive signs of life. I have begun my consulting with the art business expert and have been energized to continue to look ahead and see possibility still.
I am deeply grateful to all the people who have been sending me prayers.
I seek to embrace the abundance that does exist, opening myself up again to long-time friends and the many good people in my life, who encourage me to hold on to faith.
I want to give great thanks to the community in Guatemala who are devoting days of prayers to my healing, I am humbled by their generosity. I am so grateful for so many prayers from people who barely know me, and pray as much as those who have loved me for years.
Their faith that I deserve healing, their willingness to give up food and water to make the prayers stronger, for my healing, tells me a lot about medicine.
I feel the worst about myself when I face my role as the provider, the sole provider. I feel trapped when I consider how to work harder when my legs can not carry me faster. It’s then I feel so hopeless. So, I have to hold on to faith.
All I can do now is put my faith in the prayers, and pray to find the right PT.
I did find a doctor who is very experienced with CRPS, and he employs alternative methods. I was so excited to find him. Then, I found out he doesn’t take insurance. I don’t know how I’d be able to afford it given the other challenges.
I did find a PT that takes Medicare and I start next week. They have experience working with nerve injuries. They offer a range of approaches and although mirror box therapy is not yet a modality they offer, the assistant said they’d check into it. The PT’s office was also familiar with the Medicare exception and it was nice to not have to also be concerned on that front given that I will start with 24 PT sessions.
This week, someone said that I might actually get better from the PT. I had just read about a variety of people who had tried so many different approaches to CRPS without success, so I was less optimistic.
But, its true, I might heal from the PT. It took so long to get access, my friend’s reminder helped me retain hope. I started informing myself about the best way for CRPS patients to choose their PT, and by learning about the CRPS exception for physical therapy.
With the good news, and forward movement, I am feeling freer to approach two other specialists I was recently referred.
One, an accupuncturist, who works with other RSD patients, and, a homeopathic consultant with years of experience.
I will be exploring all the options available. I will be sharing the experience here for others who are struggling with pain like RSD or other pain conditions.
Only just a year ago, my day was mostly spent dealing with the overwhelming burning, horrible headaches and nausea. The daily warm soaks, using skin cremes to beat back headaches and aches, and, using honey to push back the nausea, as alternatives, have all had positive impact on my pain levels and general comfort.
I can’t say enough about daily meditation, and, EFT for bringing down stress and fears.
I think Emotional Freedom Therapy can be one of the most important tools in the healing box because it works directly through accupressure points on fear and trauma, which can arise just from the pain levels, but also, accompany the ‘disbelief’ aspect of this condition.
In my case, limiting my activity enough over a long enough period allowed for a space to develop a new level of ‘normal’ when the pain is limited and I can be easily distracted by turning towards my endeavors.
I thought to try this approach after reading about mirror therapy research, noticing how with RSD, the patient’s brain creates these pain pathways that never get shut off with the condition, so these pain pathways get grooved into the brain from so much pain.
It was such a struggle until, with SSDI and In Home Support, I was able to stop pushing my body long enough to rest.
I also stopped fighting the need to rest. Instead, I focused on what I could do. As I always say, I give great thanks to my computer, the lifeline to the community.
I was able to, little by little, build up the positive, low-pain moments and, unless the weather was particularly bad, these moments started adding up. Was I was creating positive pathways? It sure felt like it.
Unfortunately — not yet anyway — has this theory and experiment of mine changed the end result whenever I head back out into the world with the same confidence I feel sitting day after day.
When I go out walking to do errands, it’s not more than a short period of time I am brought back to the same place, same symptoms. It becomes a cycle in itself.
I still believe that these positive pathways are going to continue to grow. With the help of the pain specialists, I am going to extend the positive pathways into walking without pain, using my arm without pain.
As I have strengthened emotionally and spiritually, my desire to increase my activity has grown.
Although the recent swimming experiment and driving brought the burning back, and actually extended it, I want to find a way to move beyond the pain.
I know just ‘doing it anyway’ brings on more symptoms, so I am excited that physical therapy, in a consistent way, can possibly help me move beyond what I have been able to do till now.
I don’t know what will happen in the appointment with the pain specialists, what testing we will do.
I pointed out to the neurologist this one point on my hip, a nerve or a muscle, when I touch it, the pain is excruciating and goes all the way down to my foot, and goes numb whenever I stand for any extended period.
Each day my symptoms are different depending on the weather, making planning difficult.
Going down to the neurologist, I was in the warm weather and out of the fog. It was a delight to my body and skin.
The specialist I spoke to this past weekend mentioned that the cold, damp climate probably is not the greatest for me. The joy of the sun on my skin, and the sight of the beautiful California coast prompted me to consider once again moving to a warmer climate.
Anyway, in the meantime, until the next appointment, I continue to do all I can on my end to improve my health.
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?
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.