Complex Regional Pain Syndrome Severity Score (CSS)
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.
A few days ago, the weather was in the upper 80’s, a nice treat for me. It inspired visions of driving a short 2 hrs to the mountains by the ocean I love so much.
Strangely though, while the warmth was soothing, old symptoms cropped up again, like the little skin blisters and itching. Difficulty sleeping too after I attempted to drop back from the medication a bit to see if these improvements with the weather could be built upon.
I have been doing my daily mediation in the morning, listening to Louise Hays every day to work on rewiring my brain.
I’ve had been off my right leg for many days now, so yesterday, when I went to see my child off, I felt like I was doing pretty good. Except, I felt like a failure that I could not drive him, and in the morning, I called myself lazy and asked, was I just not wanting to make the effort?
But, later in the afternoon, after an ambitious attempt to organize my room lead to excruciating pain in my right leg and arm, I realized, it was an illusion I could drive that far on my own, and back 2 hours? The pain reached that pitch that literally causes me to fall asleep. Like the pain killers used to, but, all the time.
A few days ago, I used dance as healer, playing a few songs that can’t help but make me want to move. My left side does most of the moving but I coax the right side as far as I can. I miss dancing sooo very much. More blisters came out, this time, on my left side. I had a blood draw two weeks ago, on my left arm, and I’ve noticed now a few subtle changes on my left side. Still, not enough to hold the left side down in a bit of dancing.
I wrote earlier that I was going to share more about a few of the heroes that I want to give thanks. After being turned away from the neurologists, I was feeling pretty down, and confused about this entire process. Then, in the midst of it all, and because my new GP had thought we needed a RSD evaluation from a neurologist, I finally started connecting with other people who have RSD.
I purchased a book written by Nicole Hemmenway, “No, Its Not in My Head,” about her nine-year plus journey through a very extreme case of RSD in her arm that she got as a young, soon-to-be high school graduate. Nicole eventually ended up in a wheelchair.
Nicole had traversed something few people at her age or older ever had, and as is her spirit, she shared her journey with the world in her book.
Nicole Hemmenway walks the walk daily in her blog http://blog.nicolehemmenway.com/2011/06/25/celebrate-good-times.aspx (You can get her book there too.)
I thank Nicole greatly for her courage, and her kindness.
What has been most inspiring in reading Nicole’s story is hearing about her recovery, of her getting out of a wheelchair. She gives thanks to Dr. Rhodes in Texas who has worked with many RSD patients, and others with similar conditions, to bring pain relief.
I spoke with Dr. Rhodes a few weeks back, and, just talking with a doctor who understands, who didn’t assume I was trying to get out of a ‘bad life’ with an illness, who did not make any judgment of me but had answers about the condition, It was Healing right there!
I have also been inspired by Joseph Martinez. You can read more about Joseph’s experience here http://www.dailybreeze.com/news/ci_18130738
Joseph is currently being seen by Dr. Rhodes. Joseph has a very extreme case of RSD because the condition came on by way of a stomach flu, so his entire body was deeply impacted since the RSD originated in his stomach.
Joseph was also experiencing the nausea that I have, and I shared with his mom that honey has been a savior for me. I take it when I go out to avoid any mishap as exertion seems to provoke severe nausea. When it was warmer, the nausea, just from eating, returned.
The honey immediately stops the nausea, and I am able to recover very quickly. Strangely, I have noticed since using honey for this purpose that my level of nausea has decreased overall.
‘It’s not hokus pokus,’ were Dr. Rhodes’ music to my ears. He knew every symptom I had been experiencing for the last 2 plus years, each and every one, not just 2 or 3 he read from a book.
And, Dr. Rhodes was nice. Hey yeah, he was nice. Not overly so in a fake way, but ‘understanding’ and well, let’s just say, I’ve had a shortage of understanding from doctors so I am grateful for any.
Dr. Rhodes, and the patients who have been treated by him, do not speak in any absolutes. Each case is going to be different. No promises. But, understanding, wow, that is half-way to hope right there and that’s the closest I’ve come to the type of doctor patient relationship I had always remembered until this RSD came up.
I am very excited to leave behind the past and move forward.
My last meeting with the new GP was also inspiring. She understood my frustration in not being seen by the neurologists, and she did say she had ordered my records from the previous place but still had not arrived. She said as soon as she had those records, she wanted to find a neurologist in SF to evaluate me. She took more blood, not sure what for, but it seems right she’s at least checking the levels so to speak. Thankfully, so far, everything else is fine with my health.
To get to see Dr. Rhodes, I need to find out whether I can travel and as my GP confirmed, she doesn’t want me traveling until I do have the neuro evaluation. Dr. Rhodes will work with me for five days and then, can work closely with my GP here to continue the treatment.
I am very excited that, soon, I will have some answers about next steps. If I can travel, next steps are – how? How to be able to afford to travel there, and how to afford the machine and other things that the insurance does not cover. I know I have to get there if Dr. Rhodes can make this pain go away so I can resume my life again. Since I dreamt that I will walk again, I believe this will happen and I only need to find a way there.
It frustrates me that non-invasive approaches such as this don’t have coverage while, often other things, with side effects that can degrade health, are approved lickity split.
My limited income till now has forced me to consider alternative ways to healing. Since there is no cure, only pain management available, there is a lot of space in between that is complex and often difficult to understand, even for doctors.
I see from the RSD Canada site interesting research that shows RSD is caused by nerve damage, and there is another treatment with IV that, like, what I am learning, may be related to how much oxygen the nerves are getting, related to circulation.
There is more research coming available every day. In this day and age, it seems that its important that research be put together considering the rareness and small number of patients globally speaking. What about harder to reach places where many may get this tragic condition and face unknowing doctors too?
I am having to consider the realty again of not having the resources to get to the doctors I need. I thought Medicare would be an answer, but I see the politicians ready to punt it down the road.
I’m not even sure I will be able to cover the costs not covered by Medicare, and some days, I think about giving up on seeing a doctor at all. Talking to Dr. Rhodes helped me consider once again that what happened these last two years may recede forever as a memory, remaining only an impulse to make sure it never happens to anyone else.
In light of the upcoming budget cuts coming down in July 2011, I am now faced with a dramatic income shift.
The in-home support and benefits had made these six months bearable where before, getting food, doing laundry, were painful reminders of what I could not do. Reminders of how awful to be stuck on the 3rd floor and how little I get out at all.
The budget cuts for vital disabled services feel like another sign that I am disposable in this world. Only, I know I am not, so I must find another way.
I feel the stress, which pushes me to want to get better faster, making the month in between till my next appointment with my new GP feel almost torturous.
I want to travel to Dr. Rhodes and live the dream I had a few weeks back of walking again.
I am reminded by Nicole’s experience that this is a process.
Dr. Rhodes also makes sure to explain, his treatment is not a cure, its pain relief to allow for the best possible life.
Knowing that my GP is moving forward and can be part of the team in finding a solution is a huge step forward.
Dr. Rhodes said with the relief of his treatment, patients can stop taking pain medications.
Its one of the most appealing aspects of this treatment, and is a great addition to the arsenal I have been utilizing to gain the improvements I have so far: mediation, positive thinking and looking beyond limitations. I have chosen not to take pain killers, narcotics.
In that vein of considering creating the best possible life moving forward, I have been considering what comes next in my career. I’ve sought the support and guidance of a Small Business Counselor who is helping me address both the internal and external blocks.
I have found myself, at times, very sad that I am unable, right now, to physically lead my life as I had before. I’ve had to process this change, a letting go of the past, to be in the here and now.
I’ve also begun to consider how I can work given my physical limitations and I am trying new experiences.
I’m developing the Catherine Herrera Photography online site for sales from my photo portfolio, from which these latest images are a part.
I am now working on a cover photo for a book, which has been a delight of a project. In this assignment, I have set up the images in my studio, instead of running around on the streets.
I am still working on graduation photos, now several weeks in process, rather than what would have been a day to turn around before. I have to let this be ok, but it feels like a pull weighing me down. Perhaps that is why the new approach to my work is inspiring, having the advantage of a different workflow than photojournalism.
In that vein, I have started to look at writing in a new light too.
Recently, I shared with some friends that this condition’s impact on my mobility had the effect of forcing me to sit down, to stop long enough to focus on editing in a way I had not before. Also, writing.
I try to cultivate a ‘present’ moment attitude, and it is from that space that this series, From My Window, began. I’ve just uploaded new images to the series.
I also took the step of applying to the art institute to see if I can take any classes next semester. I have been encouraged by the experience of RSD patients further into the condition who often say ‘pain is not going to rule my life.’
I did not understand this entirely before, but now I do. Maybe I won’t be a student like I was before, but as I have seen so far, art, communicating and sharing my experience with others has been very healing and positive.
The internet has become an indispensable tool for the disabled, or those with illness. A lifeline that never existed before.
I remember thinking in that awful first year how dearly grateful I was to the internet. It provided needed distraction, and it provided a way to still interact on a level that was not in any way ‘disabled.’ I think that’s why perhaps so many have said they never knew what happened, or others who were shocked by the cane and walking difficulties where my voice and person was so clear here.
The internet is a source for information. It is a PIPELINE to Laughter, which became my best friend.
Since I did not want to start pain killers or medications that had varied results, or in some cases, recalls for off-label uses, I had to cultivate a new tool box of devices. Without the internet, my life might have been very different today.
The cold has rumbled back in, and the warm water of my healing bath each day feels divine, like a rejuvenation and soothing spa. Summer, I bring with me the smells and flavors of fruit. This week, with the left over Jasmine flowers from my photo session, the fragrance of a forest, of deep soil, and I smell health.
I like getting fresh mint and basil, now in season, to put around the house, to smell those aromas feels very soothing to me, and gives me an upbeat connection to nature here in this 3rd story perch.
As I contemplate a career moving forward, I must consider housing for live/work. On SSDI, my income is limited and I have had to grapple with that reality. I felt hopeless about it before, and as I begin packing and looking for where to go next, I may feel that way again, but I am trying to simply recognize it and not attach judgment.
I have looked at artist communities in different places, and even considered purchasing a $100 house in Detroit or Philly and joining other artists seeking places to survive.
But, then, California keeps a strong hold, and I wonder, is there a little plot of land for me? I guess the issue of housing, as an artist, has truly always been an issue for me since I moved out of my mom’s home. I was working on the photo series, Landless Indian, at the time I was injured. You can see the work in progress here.
I joke with my grand-aunt that I will have to learn to grow my own food and figure it out like in the old days and she sounds more relieved with the joke rather than worried as she had sounded a minute before. You see. Laughter. Best friend.
I don’t tell her I am scared.
I feel the beating down of the pressure from the social service agency, again. Now, claims that they did not know about SSDI income, which seems odd, so I have sent them the emails clearly indicating we discussed it right after my hearing, and again, when the housing social worker recalculated my income for housing based on both the ssdi and social service aid. What if in-home support is cut? These are the worries that I try to wash away with Louis Hays in the mornings to start my day, but I can’t say it’s as easy to push away in the evening.
I’ve sent proof now to the hearing judge, will it matter? I have learned over two years of these constant battles, often, its a losing one. It’s discouraging on top of the struggle to get my health back.
In speaking to the, now, several RSD patients I know, one recurring theme that jumps out at me is the need to be an advocate within one’s own community. I have provided information on RSD to the social services agency, hoping I would no longer be seen as an ‘enemy’ out to ‘take’ something. The disbelief on their part has been an added and constant burden since the first diagnosis of RSD in 2008.
I was encouraged by the results others have had in bringing greater attention to the experience one goes through after being diagnosed with RSD, and I believe in sharing with the goal, instead of punishment, of greater understanding.
I decided to bring attention to my experience to disability advocates. I did this in part because of the affinity I feel for Veterans, both as someone whose family members fought, and as a result of the afternoon I spent last spring at the Veterans building in San Francisco. You can see images from that day here.
Soon after, I read about Veterans with RSD, who had gone to Congress to share their experience with the condition, and similar tug and pull with agencies meant to help but confused as we all are by this condition.
I am always encouraged by the positive, yet, determined approach of the heroes I’ve mentioned today. What I appreciate about Nicole is her forthright understanding of the very difficult, and often, solo experience RSD brings, on top of the body ‘feeling’ hurt. She doesn’t hide that painful reality, and in so doing, makes it possible for others to see a way through.
I am inspired by Joseph for his parent’s and his courage to visit over 17 doctors in search of a cure for the excruciating pain their son was experiencing. I am rooting for Joseph and his family. I’ve heard from his mom and Joseph is doing very well.
I am someone who is in the common age group of RSD. I am older than both my heroes, still, I am without shame in saying, I am grateful to them for lighting the way forward with their resilience and faith. May they both be blessed with permanent relief from this pain.
Here’s to living in the moment.
Thank you to people visiting this blog. It took so long for me to open up about what was going on – no one wants to share vulnerability. Isn’t that we have all learned?
If this experience has taught me anything, it’s that I really did think I could do everything on my own, this was the sign of independence, a life well lived, a success. Of course, I totally wasn’t doing anything all on my own, but I guess I felt that way. I was caught between that belief about independence, and the ultimate knowledge, that all of life is connected.
I needed to consider things from a different perspective. That has been one of the best parts of this experience: opening up to needing that connection to everything and everyone else. To really understand how the butterfly flapping the wings can effect the wind in a village in China.
Not in an abstract fashion, like it was when I first heard it, as information on the fly, whizzing around my brain but never quite settling in until now.
This week was an interesting experience for me.
I had physical therapy again. We started the mirror work but honestly, I was wondering why we were not working on my arm. I had watched the video and I liked what I learned. But, I simply could not understand why we were not working on my arm, the site of the original injury, CPRS diagnosis, and the extremity that shook the very most, just lifting my arm.
I put my arm out, the shaking visible to everyone in the room. I am a photographer/filmmaker, so, to me, this right arm is as functionally important as my right leg.
That’s when I learned that supposedly my right arm was no longer being evaluated. We ended our session so we could review the doctors referral because I knew for sure the referral says my right arm and leg so I hope that will clear things up for next Tuesday’s appointment.
This was a tough week, I had three, albeit short, things to do this week. I gave myself a day in between to rest, and I made sure to get to bed early. That’s not a problem this week. When I go out walking with my cane for any extended period, the pain when I return is enough to put me asleep. I guess the brain can’t take pain levels that high. I don’t take pain killers so I guess it’s the body’s natural reaction.
Today, I’d like to go out again but I barely made it last night, and its raining today. I am home it appears.
Before I left last night, I thought about how days like yesterday, having done an interview very early in the morning, barely able to get my body together to go out again, a lot of shaking through my right side. Two new dots on my wrists, this time, much smaller. I thought about the wheelchair, how it would have been nice to be able to get myself to the stage that evening, and then walk around a bit with the cane, but avoid the painful walking that just grows into a pounding, and makes it hard to stand on the leg at all.
DANCE TO HEAL, EVEN IF ITS USING YOUR MIRROR NEURONS
I put music on early this morning. Ancient sounds sat with me as I watched the gray rainy sky, seagulls flying, drops fall in considering the seriousness, and beauty of life. Gratitude.
Now, I put on music that makes the left side of my body move like it always did and I close my eyes, I see myself dancing – all of me, the right side too. The right arm might be slow dancing right now, the right leg silent, but, the whole body sings with movement and I see all of me dancing. Just like before, Just like in the future, so be my present.
I could go on about the science of this…or how ancient the knowledge…or just give gratitude for this moment, sharing with you reading my words from where I don’t know….invite you to turn on your music. Even if you can’t entirely picture yourself, forgive yourself, tell that part of your body that hurts, I love you, and I thank you for the message you have brought. I embrace you.
My gait was better this week, in fact, that felt much better. I shared with the PT how this cycle has played over the last two years, these cycles of symptoms coming and going, oscillating between, doing a dance themselves.
Right now, its stepping on the foot and leg that hurts, the ankle swollen and blue. I won’t step on it today too much.
But, I will keep dancing in my mind, and the mirror neurons and the emotion neurons, will be happy.
DANCING WITH PAIN
I want to share with you a beautiful site I ran across in my research. Dancing with Pain explains the phenomena of dance healing, directly from someone who not only healed herself, but witnessed and connected with other people who have done so. It’s not just any old song, it’s a particular vibration of music that allowed this woman to be able to dance without pain where another song without the connecting beat did nothing to ease or eliminate her pain.
It’s interesting that Dance Therapy is having such an impact on chronic pain, and this site really explains in much better detail the science behind that concept than I could myself.
Dancing with Pain describes the vibrational value of life, highlighting the interconnectedness of all of life. From Dancing with Pain:
‘Ayurvedic medicine – an ancient holistic system originating in India – teaches that if we introduce a healing vibration, it will set up a certain resonance or harmonic effect on whatever is disharmonious or dissonant. This resonance in turn provides the memory of harmony — helping the imbalanced or disharmonious state to recall its previously harmonious state. With that, ayurvedic medicine teaches, comes the restoration of wholeness and health – thus the ancient chanting traditions of many cultures around the world.’
Very encouraging. This site has been a great source of positive hope and expectation.
A few weeks ago, I tried one session of singing with my drum, the one I made myself. It was such a beautiful experience, feeling the vibrations in my body, and the joy in singing. My neighbor downstairs didn’t like the deep sound of the drum. He is an older Vet, he’s had a challenging life, and suffers many health problems. He uses morphine to control his pain. We don’t visit often, but I do pay him respect for his service, by sharing food or giving gifts.
He pounded on the floor underneath me, the roof above him. I stopped because I could understand his position.
It made me think, how did we create a world where singing and dancing is so rare? A nuisance. A relic of the past. When will there be a day of singing and dancing freely?
In some strange way, my not walking on my leg to prevent high pain levels, which builds more neural pathways of pain, has been the best advice I took. It came after a long time of me trying to push myself out to walk. I thought, naturally, that’s the way to heal. And, mostly, it is.
Yet, in the opposite direction. Mirror therapy, dance, and any activity that brings relief will create more positive pathways in the brain, and the idea is that eventually, those paths will take over, and the pain path will diminish and disappear entirely. This isn’t quick. A woman in a wheelchair no longer needed it with dance therapy, but, after a few years. It’s not like magic. And, you wouldn’t want it to be if you think about it. You, and I, we, must be involved in building these pathways in our own brain.
Here are a few articles to explore more about dance therapy:
A) This article shares a wonderful practice of using movement to better understand the feelings, emotions, and challenges a patient faces, and works with that body truth to perform healing – healing from reading the verbal language of one’s body. Brilliant!
B) I share this beautiful writing on the power of dance to heal, in this case, the earth. I find the words so powerful, and, its kinda exciting, even if you stopped to dance because of illness, stop and do it.
I love how our very own dancing joins us to the web of connection of life. Right there as you lay on a couch or in bed, even the very little you might be able to do today, just do it, add your grain of sand, your beat to the dance of healing. And, consider, the earth too, which needs dancing so it can heal.
If these articles are kinda foreign still to your own individual healing process, don’t worry. Music vibrations present unique healing opportunities. The most important thing is that you find what resonates for you.
Remember, kick up a jig or two, it just might save your life.
I hope its warm where you are.
I was transferring my photo of the day, and this colorful ‘mistake’ happened. It seemed appropriate to this post so I have left it. The original is posted below.
Its gotten real windy and the rain clouds are here. I already knew they were on their way. The type of pain in my right arm and leg changes a little before, now, I know the signs. Its a weirdly deep pain, and much more of an attention grabber.
I spent a lot of time in the warm water yesterday, but, there wasn’t much exercise or prayer. Frankly, I could hardly move so I let the water do its thing.
I did think positively because, as I might have explained, I believe in the power of water, both within our body and out, to be a powerful medium of thoughts and actions. The water of my daily soak is a healing companion.
As I am now starting to understand, I probably do have CPRS, probably not CPRS-I, but II, with nerve damage. I still have not heard from my doctor about the PT’s report they said they were sending her.
Having finally started physical therapy, I can be much more directed in my own work at home. Before, with the constant doubt, and confusion from the doctors due to the complexity of the condition, visits have been very frustrating. I have been asking to see a specialist, but, I kept getting the strange blank stares.
Now, armed with more information, I am able to work as a very dedicated partner in healing, no insurance approval needed.
After a few months of seeing that incredulous face staring back at me, and the horrible emotional strain following those appointments, I realized my health required that I stop putting my self before the doctor as the only source of my healing. This is when I started the mantra, ‘I am the doctor.’
I believe that switch emotionally, and mentally -neurologically- helped me tremendously.
As did my mindset only a few short weeks after the injury, when I had learned the frightening level of pain that CPRS can bring.
LEAN INTO THE CHANGE
I remember laying in utter pain on the couch. My son was doing his homework, but he too was suffering and stressed. I did my very best to make dinner, carefully doing everything so as not to cause more pain, but, it didn’t matter, every movement was so painful I was grunting with every movement.
Finally, the meal prepared the best I could, we sat down to eat.
My son was visibly upset. I am sure he was scared. I am his only parent, and seeing me suddenly unable to move like before, was deeply scary for us both. I was having difficulty adjusting myself, but, I knew my son needed my help more.
It was in that moment I made a choice. That evening, I shared with my son that life does not guarantee anything. We do our best, and go about our lives, but sometimes, unexpected changes come about suddenly.
What we do in the face of that challenge makes a world of difference.
I shared with my son (and myself) all the things I gave gratitude, for all I was able to do in my life.
I thought of how I had made the most use of my legs getting myself around, dancing from the time I could, travels to distant places, these legs had carried me many places, and I was deeply grateful at that time that I had been able to do so much of what I had hoped.
I was now required to learn something new, and there were going to be important lessons for us both. (Not the least of which, having better, or, any, medical insurance).
I pledged to him that I would do the very best I could. In place of resisting, I’d lean in, learn all I could about the condition, and give my all to regaining use of my arm.
I didn’t know only a few short weeks later, the pain from walking would completely debilitate my ability to get around. I also had no idea that, soon, I’d be told by the neurologist CPRS doesn’t travel , or that it would be a whole other 2 years before I was seen by a PT.
I know this experience is one so many people have, even with the best of medical insurance.
NEURO ORTHOPEDIC INSTITUTE
In researching CPRS, I learned early on about the importance of new discoveries in neuroscience, clues that point to the brain as one of the keys to treating CPRS.
When my physical therapist brought up mirror therapy – which we will try tomorrow on my leg – she also invited me to learn more about the treatment from the Neuro Orthopedic Institute, a site where you can also find out more about the exciting research being conducted for CPRS-1 patients and people with complex pain conditions.
I have noticed a lot of the research on CPRS is coming out of Australia and the Netherlands, and its very encouraging. The NOI group has as its motto: ‘Healthy notions of self through neuroscience knowledge.’ Nice vision, very empowering.
I will check tomorrow with the PT whether, or how, the nerve damage impacts the diagnosis – does this mean I have CPRS II?
I also took the step today to call my doctor and ask for a new diagnosis in writing based on the work with the physical therapist.
I must admit, I thought my PT appointment was last Friday as that’s been the day of my last two appointments. A very kind message from the PT on Thursday afternoon to find out if I was o.k. and why I missed my appointment, made it clear I had missed my appointment. The automated appointment confirmation message from the hospital stopped just short of the time and date. We rescheduled for Tuesday.
Tomorrow, I will find out more about whether the nerve damage means I have CPRS II.
The reason I asked the PT this question previously is because one can have nerve damage but not CPRS. Since I have only had one recent EMG, during which the pain was apparently so high the technician could not read the report properly. I’ve asked my PT whether my right arm and leg nerves will be tested again. She says only my doctor can make that referral.
In viewing the very helpful material from NOI, I realized the treatments speak to CPRS I. Either way, and for those who have CPRS-I, this video is pretty amazing.
THE BRAIN – OUR PARTNER
I have become fascinated with neuroscience since this all began, and the research described in this video from NOI points to the incredible resilience of the brain, and its ability to be our greatest partner in the healing process.
I think this encouraging information will give hope to people because, often, in those first few months, the sudden isolation in the first phase of CPRS, is tough, and it can be hard to hold on to hope.
Now, we know from this research, just how important our brain is to healing.
In the video linked below, David Butler shares a pretty amazing fact. The brain not only has the ability to respond to real movement, but also perceived or visualized movement.
This natural neuro activity is the way into the brain with mirror technology, using the brain’s ability to react exactly the same to perceived as to actual movement.
Since I ‘graduated’ during my last therapy session, I will be working with mirror therapy tomorrow. To show my brain the side that works well, and convince my brain its the side with the nerve damage, but without pain, to push the brain on to heal.
I am a little confused by this all, and whether I can heal nerve damage with mirror therapy. It seems nerve damage requires a different approach, but I still do not know much about this all. Let’s see what information I can find out tomorrow.
What’s very cool about the research David Butler presents is that our brain can be helping us the whole remainder of the time we are not seen in the doctor’s office, those deep gulfs of time and space when great fears can creep in.
Early on though, in reading more about the neuroscience, I realized the positive state of my mind was crucial. I must admit, keeping positivity in the face of the medical doubt and delays, and, physically struggling with homelessness and poverty, I lost perspective many times.
Since visits to the doctors were painful encounters, I began to notice the peace in between. To survive mentally, I told myself I was the doctor. Now, I am starting to realize my mantra was not just a mediation tool, but, an actual intuition towards my own brain’s ability to heal.
You can listen and watch David Butler’s presentation on Graded Motor Imagery.
GINGER’s HEALING IMPACT
As I mentioned, I have been working with ginger ever since the PT confirmed the nerve damage. I continue to feel overall benefits in my health that I enjoy, and I have noticed over the last week, fewer changes in blood flow on the outside of my right leg.
Yesterday, I had terrible shaking on my right side, feeling so strong, it was like an earthquake was rumbling through, and the nerves through my body were firing off.
TECHNOLOGY CAN CONNECT US TO INFORMATION
Keep that in mind today – we are lucky to have this intuitive healing research available and accessible online. Counting the positives was also a big healing tool, so I often realized how lucky, if one is disabled, to be so in this day and age, when there is thankfully still a world and way in which to participate, for the speed with which patients can connect to each other and experts, and, innovative researchers like those at NOI who are educating doctors and physical therapists from around the world.
Ok, yesterday, and last week, I was feeling pretty powerless. A friend called yesterday afternoon, my cheery disposition a surprise. She tried last week to help by referring me to two people who might be able to help me find access to a neurologist. My dear friend heard the panic and fear last week as I realized the specialist’ advice to get to a neurologist was not something I could compel the hospital to do, and frankly, how ridiculous to not have access to a neurologist and pain specialist anyway?
I was cheery because I put that stress in a space of time, allowed it out yesterday – and, then, I put it away.
I was able to sit up most of the day working with my leg in the right spot for the pain to not become overwhelming. Walking around the house, the pain was shooting in my foot. I stayed put. Luckily, now, I have in-home support so laundry was done and brought back up the 3 flights of stairs, and, she did a little grocery shopping so we had food to eat.
Nausea came, I ate honey. I drank Ginger tea. The tea is really starting to have an impact. It’s interesting that it takes time, it’s a gentle building up. Yesterday in the evening, I felt some tingling in the right side of my right leg, and it was noticeable. You can imagine I have started my morning today with Ginger.
I am also on a Live Chat with Dr. Christo from John Hopkins, who is answering questions about CPRS from readers. This chat feels like a blessing, to connect with a real live specialist. I have submitted several questions so I hope I can get a few answers today for things I did not know already, and maybe some of the answers can turn around this situation.
Anyway, I want to open up to hope and possibility by learning, finding out as much as I can about CPRS – If you want to catch the last half of the Chat you can visit at
I hope this brings you a little comfort today!