Ancient Possibilities for Today
You all know the saying about the coldest summer right?
So, when it’s warm here, its lovely, and every frustration within the Golden city is forgiven with views that inspire deep understanding of the word ‘paradise.’
I was offered the opportunity to house sit for friends who have one of the most beautiful gardens in this city. It’s almost the size of a house lot itself, and in the very back reaches is a special pool.
I was doubtful about offering to house sit, since movement and use can spark symptoms, and I know now that activity has its price.
The family themselves eased my fears, letting me know that the house had been adapted for one of the family members who has MS.
Even the garden had been set up so that there were plenty of supports to make it all the way thru to its end, where, tucked in the far reaches, I saw the shining pool, custom designed for MS therapy. My youthful pool side days growing up here in California flooded back, and I smiled to see the blue waters.
I knew the family understood my physical situation, so I felt more at ease and excited to sample an environment that had so beautifully integrated mobility enhancements into such a wonderfully warm, bright home. I was inspired, as if someone had opened a window to show me what is possible, a normal life with some modifications.
I was also happy to have a place to enjoy with my son, so much of his childhood we had spent outside, I hoped the garden would allow us an important connection that had been frayed and tested by this condition.
I was also excited to try swimming as exercise. I hate that I can not walk. I hate that I can not exercise. I do any type of movement I can at home, when I feel good, I dance, or at least move the part of my body that can, and when I feel good in the right arm and leg, I do small movements, careful to remember that building up, little by little, can be built upon for longer-term improvement.
By now, many of you might recall that into the second year, I began using warm water as a pain management technique. Over the last year, as it seems I am experiencing more ‘chills,’ the warm water has become instrumental in managing the pain in my right arm and leg, and brings relief in a way that a shower had the opposite effect, each drop burning my skin.
I also found the water temperature somehow balances out the internal temperature, bringing relief.
On caveat. I have noticed that afterwards, until I lie down again, there is a sensation of the outer side of my leg being ‘asleep’ like the circulation is not moving there, and its bothersome. This is what I feel when I stand for too long, when I go out, I have to ‘shake’ my leg to try to get relief. Getting off the leg is what eventually brings relief, and one of the reasons that I, over time stopped trying to force myself to walk, thinking I’d strengthen that way. The nighttime after walking or activity comes with throbbing pain in my arm and leg, and incessant nerve firings or perhaps, now I better understand, those are spasms.
I’ve wanted to try swimming, believing that all my many swimming days when I did not have RSD would add up to extra movement in the water, the opposite of the restriction I feel walking on land.
Last summer though, as I prepared my application for the local YMCA, and started doing small exercises to prepare to swim, the activity upped the symptoms in my right foot, provoking the sensation of a broken foot with each step, and a near 3 months almost entirely home bound.
FRUITY ANTI-OXIDANT FLAVORS!
Speaking of healing waters! Don’t forget that summer is a great opportunity to combine fresh fruits – high in antioxidants – and other supporting herbs for a healing bath. I have recently read research that shows how the skin in involved in chronic pain, and perhaps this points to the various skin reactions of people with CPRS, the ‘burning’ sensation, and other skin issues that develop for chronic pain patients. If I understand correctly, the skin symptoms may be an indicator of pain, rather than as a symptom of pain. Read the full article here to learn more. Taking in mind what I read, I wonder if I am inadvertently nourishing my skin, and hence decreasing symptoms by adding these anti-oxidant elements to my baths. Worth a try.
So, a year later, and a pool right in the back yard, a yard where I could sit with the trees and birds and sun, I felt blessed for a break from the little 3rd floor studio from which I rarely venture, I felt blessed.
Before arriving at their house, I had to figure out how to get my son home from camp, located about an hour and a half away. The camp had arranged a carpool there, for which I was grateful. Yet, I had felt so useless as a mom to not be able to take him, to not be able to enjoy an activity we always had, driving through beautiful California, exploring together this great land.
So, I set all my sights on going to pick him up. I couldn’t wait for him to see the garden and pool too. I spent a few days preparing physically, resting up. It was a beautiful day. Warm, which helped a great deal, as for me, the warmth seems to make it easier, movement wise.
Already having driven over an hour in unexpected stop and go traffic nearly the whole way instead of the cruise-controlled, gentler-for- my leg ride I envisioned. I was late too which stressed me. I should have stopped and done a quick EFT which immediately helps lower stress and has become a valuable tool for me.
My teen son was happy when I drove up, dusty and tired, but happy. He jumped in the car with ‘I hope to come back next year too’ which was a good sign he had a positive, healthy experience at this new camp. Yet, quickly, as I wanted to know everything he had done, before I knew it, he remembered he’s not supposed to not like his mom, and the conversation ended with ‘I hate you.’
I tried to push back the sense of being unappreciated, and tried to remember I could be purple and my teen probably would find something to hate in his parents. The bull and the lion. We quickly were done with our mutual fit, and we went on down the road towards the late setting sun along the coast.
I had driven this road so many times, it was familiar and felt like home since I had known it most of my life.
Before jumping back on the road, we stopped for a bite to eat which was nice for about 10 minutes before texting interrupted and we were two generations at odds as to what to do with such a beautiful moment in the here and now.
I realized just how close we were to the spot where my grandpa had always taken us each summer. I decided to share that special place with my son, stopping so he would know it too.
Sitting there with him, in the presence of the spirit of my grandfather, I knew that we had come through so much these last 3 years, so many changes that RSD brought, requiring us to become stronger in other ways, to grow closer in new ways. In my next post, RSD and Parenting, I will be sharing a bit more about this experience we’ve had and what I’ve learned.
The journey seemed to bring us back together for a brief moment, before he made it clear that it was already an hour and a half later, and he wanted to get home, he was tired and wanted to connect with his friends.
We set out on the return journey, now with no traffic, cruise control the savior. Time with my son, a reminder of normal like before. A reminder of what we lost, and what we’ve gained.
The sun kept shining the next day, now, at the house sitting, the garden my new den. The sun didn’t take the pain away, but it felt like a soothing hand. The birds, the breeze, the trees, they sang to me and helped ease the pain and connected me to a deeper truth about how fragile life is, how quickly time passes, how we are a grain of sand rolling in the ocean of time.
A day later, when I read that the health plan had rejected the request for a wheelchair, this time, because ‘there was no diagnostic testing to show’ I needed the chair, there was no proof I needed the chair.’
I began to feel an overwhelming sense of futility. It was like a kafka nightmare. I realized no one is really going to care whether I get treated, or whether I am seen by a neurologist. No one worried whether I was going to be able to have a better quality of life with RSD.
Perhaps it was the visit to the generational spot of our family, there on the coast, or perhaps it was simply accepting that my experience is like so many others that no one cares about either.
I came to face my own temporal existence in the world. To consider the future, what is left to me, and how I will live that life. The experience had the effect of pushing me to come to terms too with the change in my body that is there 24/7, when I wake up, and when I go to bed, and to recognize that I am different too.
Its perhaps what has lead me to become more vocal in ways I might not have before, perhaps because I now have experienced things, and I feel that its important I add my voice to respectfully asking for change.
There, at that spot on the coast, I had time to give so much thanks to my ancestors and to life, to this land, to our country, to my family and all those people who have shared so much with me on this journey, for all the people I came in contact, or got to know, or grew to love, and even those, who later drifted away, or from whom I ran.
I use meditation to work towards acceptance and forgiveness, and pray, that one day, things will change, a cure for RSD, cooperation on research, diagnosis and treatment, and a change in how RSD patients are treated.
What I learned while house sitting, laying down, not moving in my little studio was masking what having a huge house and garden to walk showed.
My symptoms increased steadily each day I made my way thru the house, and the swelling in my right arm started again.
Swimming, despite the most luxurious feeling even when not using my legs, brought swelling in my left forearm, and skin rashes sprouted up again. After another week of pushing myself so my son could get to camp and back each day for a week, both my arms are swelling, and the terrible burning that I had been able to calm, has come back in both arms.
Today is my birthday, and despite my plans to go out this evening, even for a brief moment to wish a friend well on her way to graduate school, or to go sit to see another friend’s film, I realize, that’s probably not going to happen.
As the symptoms spread, I work hard to keep down my panic. I feel my attention turning again to the doctors, why isn’t the new neurologist calling, is this going to happen again?
I saw my new doctor again. She mentioned that the last place had not recorded all my symptoms. This did not shock me. I have the photos to show the symptoms they said they never saw. I began taking the photos when the first blister developed that left a crater in my right arm, just below where the needle had gone in. As the delays continued, I wondered, if the doctors keep sending me home and telling me to come back in six weeks, what symptoms do they see? I am never asked what my symptoms are, nor asked to record them. I have any way.
My new doctor has referred me again to a neurologist, a 3rd attempt to see a neurologist, to confirm what she believes is RSD. I pray they will finally see me.
This time I was referred to a neurologist outside the city. My first referral sent by my doctor was not received. The second fax was, and my case is being reviewed, they’ll call me in 5 days.
Its been a week. I work at pushing away the worry, besides, there is only one neuro specialist there now so it might be a while still.
I turn again to my meditation, ‘I am the doctor.’
I turn to this meditation not just to spark my own internal healer, but, also, as a protective mechanism to the wait, wait, waiting.
I also use the EFT too, to strengthen myself.
So, I continue to wait for the call. I’ve been trying to get to a neurologist since April.
In the meantime, I am trying to find a new balance, to bring the symptoms down again. That means being home bound right now, using the arms as little as possible, walking as little as possible…and its hard for me to accept.
Writing and connecting with people thru the internet is a lifeline. I can start to see a line ahead towards crafting a new life, even if RSD is confirmed.
I have been watching Youtube videos about CPRS, well, really, people’s stories about how they have healed, others sharing their symptoms, helping each other by sharing hope, by making connection.
Regardless of any challenge any of us may face, we all need connection to lead healthy lives.
I am deeply grateful to the family in whose home we stayed, for giving us the space to reconnect to each other.
And, to that special place on the coast, I am grateful for the connection with those ancient cycles of life, just as vital to human development today.
I left the house very inspired to move ahead in life, to do the best I can, with the abilities I do have, and to strive to overcome limitations.
I was inspired to reach out to the Department of Rehabilitation about attending art school in the Fall since I was accepted in June. My recent flares have worried me though, will I be able to go? Will doing so only cause a relapse of the torture of the very worst symptoms?
I’ve had to soak twice a day lately. I am adjusting my food to add even more healing, pushing back a cold, which seems always at the ready these days.
I wait. Doing the best I can in between.
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.
When the weather becomes colder and damper, for a reason I, nor any doctor, can explain, the symptoms get worse.
No need to walk to cause pain, so, my pain management technique of not walking much to keep pain levels down, is not useful. From morning till evening, the right leg and arm burn, sometimes, its feels like someone has put spikes in both sides of my right leg, and the blood flow slows leaving the sensation of the leg asleep at the very right side of the right leg.
These are the symptoms I try to keep at bay while trying to focus myself on working. I have an exhibit coming up, and I am glad that I planned the walk through sooner rather than later as stress can bring on the worst symptoms. I use meditation and faith thinking to beat back a panic as the right arm spasms with shooting pain, and numbness and swelling on the edge of my right arm increases Then, I have to remind myself to let it be o.k. when I can’t work, to not add frustration upon stress.
I push back to retain my center base of strength: faith, love, forgiveness, service. As the real change in my life rears its head again, I find myself wandering back to the cause of this change. I am pulling myself out of that form of thinking, and at the same time, increasing my courage to write to people who can help change policy for CPRS patients. To share my experience so that, hopefully, – and granting its an imperfect world – we can try to still make things better – without anger, with respect, of course, but also letting people know what happens when one is diagnosed with CPRS.
Since patients are not the ones making the diagnosis, its important that doctors begin to understand what happens when they do. My doctors told me the day I was diagnosed not to read the literature on the internet because I would become too afraid and they felt this injury would resolve. I listened to them because I did not want to hear bad things, I trusted I would get better.
When the pain came on so badly, I became afraid.
At night, when I tried to stop myself from howling like a bear in pain to not wake those in the house, I sought out information because I was terrified, what was this thing in my body that was causing so much pain? I didn’t pour over information, instead, like a whiz of a microfiche slider, my mind kept settling down on “spontaneous healing” – that is exactly where I was headed I told myself. I don’t need to read the rest.
When the symptoms hit my leg, and the resulting unbearable pain in walking, I became terrified beyond belief, what was happening to me? I could not get an earlier appointment, so I turned to the internet again. I read that this disease traveled and the symptoms I had were those commonly experienced. But, that was the web, and not a doctor, so I went to my doctor. She said the internet was wrong. I said I had not just been reading patients experiences, but, reputable CPRS organizations and studies in respectable journals. I mean, hey, I know how to do research. I asked to see a specialist in CPRS. I never did get to see that specialist. There was never any doubt or dispute of having CPRS in my arm, just in my leg. Still, I was never seen by a CPRS specialist, even though I asked, and, when I continued to ask, I was ushered into a pain specialist who asked whether I had filed a lawsuit, who then, without talking to me or asking me anything or even answering a question said, ‘you don’t have CPRS.’ Apparently, she was the doctor to ‘ban’ me. Oh, and I was told to take a prescription from her from a year prior.
O.k. What do I have then, and what are you testing for? MRI, Bone Density of bones unrelated to the areas affected, i.e. not my arm and leg, but, my pelvic bone? Vit. D. Vitamin D is causing this? Every time my GP said we could not look at CPRS any longer as a possible cause, I was told it was “political.’ I demanded to know what that meant, and why, if I potentially had CPRS given we had searched every possible cause besides CPRS for two years, was I not being seen by neurology and pain management? That’s when I asked for a new written diagnosis, and I was told in the letter, that I had been ‘banned.’ In my last appointment, my GP pretty much said the whole place was ‘off-limits.’ Great. Lovely.
When pain is highest, I often have a hard time eating because of the nausea. Soups and liquids often help. My weight goes up and down 10 pounds between each cycle of pain. I have recently switched to eating as much organic food as I can. I was already on that road, which is why my GP said there wasn’t much else to change, but now, I find, my stomach reacts differently to foods, like…heck no!
One trick I found to be a life-saver – especially in those moments the nausea takes over to the degree that I am dizzy – is HONEY! Yes, honey. I can’t tell you how grateful I am to this golden elixir. Truthfully. I knew all the various miraculous benefits of honey and bee pollen, for so many purposes. Yet, wow, now I really understand.
So, enough soapbox for today – Tip: Take a tablespoon of honey as needed for nausea. Try it and let me know the results.
This site is a site for people like me who have complex medical issues in which the medical field is still in the research phase itself or for people who do not have access to health care and need a different way. I do believe together patients and the medical field can be great partners.