Well, shall I say a miracle occurred?
It felt like it to me.
Perhaps that’s why today I have no photos to post, as my mind was directed to, finally, meeting with the doctors – neurologists. I now move on to a team that will include a pain specialist, physical therapist and pain psychologist so we can do more diagnostics to confirm whether I have RSD.
So, forward movement.
It feels great, and I have hope. The neurologists felt that despite my lack of balance and difficulty initiating movement when walking, there were many positive signs from a neurological stand-point.
So not RSD?
Perhaps muscular-skeletal,? they wondered. Maybe RSD,? they wondered again. Hence, the team.
I learned information too.
The first EMG had shown possible radial nerve damage in the right arm. The neurologists yesterday still didn’t have the 2010 EMG test of my right arm and leg, nor, I guess, the rest of the tests done on bone density, vit D levels, etc.
I will receive those files soon, so I can take them to my next appointment.
Yet, as far as I understood, they did not find nerve damage or muscle weakness.
When I mentioned that I had been told by the PT’s that I had nerve damage, the neurologist told me that in that type of general conversation about nerves and muscles, it’s not in way I understood.
Interestingly, the neurologist explained, nerve’s don’t hurt. If a nerve is cut, you don’t feel pain from the nerve itself. It’s the muscles and tissues.
Again, remember, I am not a neurologist, I am still only processing medical information to better understand this experience.
So, soon I will be meeting with this team to learn more.
I feel a deep relief to be moving forward.
Especially since I recently overcame my fear about whether physically I can go to school this Fall, I went to the DOR appointment anyway to begin the process.
Now, I will be working with this team to regain physical strength I need, and overcome the pain.
All this news comes too just when I have heard from the book publisher that the photos I took for my client’s cover images were accepted and just what the client wanted! It was the first assignment that consciously took into account my reality of not being able to run and do the documentary work I have before, making it possible to open up to a new way.
As a result of the experience, I am working now with my business coach to create a series of books that will be available when I give presentations or talks, and online for the wonderful people from around the internet that I meet through this great medium of blogging.
The drive and walking for my visit has left me with shaking in my right arm, pain in my neck and leg. I’m going to work on recovering from the activity to regain my physical balance, that zone where I have been able to find relative calm from the pain thru the day – as long as I don’t walk or stand too much – daily soaks in warm water, meditation (still every day for me), continuing with the food as medicine work, and creating natural skin treatments to help with the skin rashes, itching, and strange bumps.
Ok…I said no photos but here is one from two days ago. The bumps showed up about 40 minutes after a strange painfully sharp pinching in my right forearm that produced swelling.
The neurologist mentioned that its possible I might have processed the RSD differently, in a way they don’t know about yet.
I wondered if I processed it differently because, ironically, the way the process went, I never started the standard drug treatment.
I mentioned to the neurologist that shortly after I was diagnosed, looking on the internet for alternative treatments, I came across an RSD study being done at the hospital where I was seen. I tried the experiment myself since it seemed like a better way to go then the other options, which are more invasive.
Does the medication treatment protocol for RSD cause a reaction with the RSD,? I asked. Currently, the treatments are designed to address pain but are not a cure for RSD, nor is there a generally agreed upon cause for RSD.
As the neurologists said, RSD is still little understood.
Hum, maybe I did process the condition differently.
What feels amazing is to move forward. I can now work with experts, doctors who study this condition, who will know and have access to all the newest research around the globe.
I feel very grateful, deeply grateful to eliminate the big stress of disbelief that seemed to block forward movement.
One big stress from the moment the pain started was the experience of ‘disbelief.’ It happened right after the second visit to the ER brought the diagnosis of neuropathy, then, a call from neurology to cancel my appointment because what I had wasn’t serious enough.
I was relieved when finally, several weeks later, I was finally seen in neurology, and the attending came in with the resident to say he was ordering more tests, that RSD was the initial diagnosis.
Finally, the disbelief had disappeared.
Only, it hadn’t, it had only just begun.
To experience such traumatic pain levels and have such accusatory eyes staring back is a nightmare I wish on no one. I remember in those darkest days, when someone reached out to help me here, there, I thought about others who may not have that support, maybe not as strong as me.
It’s what made me ask the questions I have here in Letters of Courage.
In my case, that ‘disbelief’ eventually traveled down a line that impacted our lives in so many exceedingly stressful ways as the agencies I turned were also ‘disbelieving,’ pointing to ‘the tough economy’ to suggest RSD was my way of dealing with the economy. Yes, seriously.
I remember that afternoon in the ER before I was stuck with the needle, as we waited and waited, I saw the news on the tv in the waiting room. It was October 03, 2008. The economic meltdown was being announced by the reporters.
I turned away to get my son dinner in the cafeteria.
Yesterday, the first question the attending neurologist asked when she came in to consult was whether I was stressed when the whole RSD started.
I thought back. I had been under stress.
My consulting contract had ended six months before when city funding for the organization’s outreach work was cut. In fact, we were house sitting at the time, because I could not afford our rent.
I said yes.
Yet, when I got home, I realized I did not mention to the neurologist that by the time I was seen for the urinary tract infection at the hospital, I had already had to adapt. Despite the set backs, I had been resilient.
I was in the second round of interviews for a dream t.v. documentary producing job on a 10-part series with a director for whom I had tremendous respect. Only days before, the professional camera I saved and worked 3 years to finally purchase had arrived.
I had already turned negatives into positives.
When I no longer had a car, I walked my son instead to and from school, seeing it as a good way to lose pounds, feel healthy.
I had started advertising and getting freelance assignments, was starting to earn money, and I felt certain the dark days had already passed me.
I also forgot to tell the neurologist yesterday that despite the disability, and tough economy, I already had a new client by the New Year. Despite the pain, I accepted the assignment so we able to move into a new home, in a neighborhood, close to my son’s school as I was no longer able to walk him to school anymore.
Nor did I tell the neurologist that the contract ended six months later, on the same day I was finally seen by a pain specialist, 6 months after I was told I did not have RSD in my leg.
Instead of an appointment, I was asked whether I had filed a lawsuit against the hospital, oh, and that the pain specialist would not be answering any questions about my EMG, or anything else.
I was so confused by what had happened since my GP had told me the pain specialist would answer my questions. I remember struggling on the bus trying to get home, in shock, apart from the pain, just in plain shock that a doctor would ask me such a question.
When I got home, I had to deal with the loss of my consulting contract.
I missed an important meeting for the client that day, but I had waited so long to see the pain specialist. I understood the client’s frustration, they had a show date that involved teams of performers, tickets had been sold, the show had to go on!
We lost our home two months later.
Nor did I mention to the neurologist yesterday, I had just completed a dream video commission this March that had felt like the greatest assignment of my career to date, but that required super patience from the client for the same reasons.
Still, none of those positive events, or decrease in stress as a result, have brought back the ability to use my arm and leg without pain or sparking symptoms, the more activity, the more the symptoms. It’s a hell.
I did mention to the neurologist yesterday that I have been accepted to SFAI for the Fall.
Can we just wrap this up now? Can I can get on with my life?
The neurologist also said I should stop saying that RSD is progressive.
I listened because ‘progressive chronic nerve condition’ is used all the time to describe RSD.
What she said, it kinda made sense to me now that I hear about people healing spontaneously, even years after having RSD.
When I got home, I wondered, why is RSD described as ‘progressive’ in so many places when it’s not true?
This seems like something the RSD medical community can agree? So that sort of description is no longer used by patients or others.
I’m no medical doctor so perhaps I didn’t understand completely myself 🙂
It was a great relief to share the news with my son, who had been there and saw what happened during the blood draw, and the terrible pain that came after, and all that happened next. The disbelief had hurt him too.
I could hear his relief. Joining up with mine.
It’s a healing, and restores faith because this experience, if anything, really rocked my faith in many things that I had granted full credit.
The team the neurologist said they are referring me is what I kept reading is standard for people with RSD.
It’s all I kept asking for, and I could not understand if the hospital wasn’t sure entirely, why did they only see me every 6 or 8 weeks? or, why didn’t they send me to the specialists two years ago when I begged? or why did the pain specialist not accept the neuro and GP referrals? or help when I went to the pain clinic to find out why the referrals were not accepted, crying, and practically, begging for help?
My mom reminded me that moving forward is good, and I give great thanks that she also called the neurologists on my behalf to ask for the neuro appointment. Special mom power she said.
Since forward movement is here, I’m going with the flow rather than looking back.
I will learn even more about RSD, and that can only lead to better understanding all around.
The neurologists scheduled an MRI, but not right away, in a few months, to me, further confirmation in what the neurologists said they saw as good information from our appointment yesterday.
So, onward movement.
I am working to gather all the Letters of Courage posts into one archive. While I do this work, I am listening to the Hay House Radio. I enjoy the positive approach, and particularly, the focus on what we can do ourselves to build hope and happiness regardless of limitations. Right now, since I have been home bound for two weeks, I need distraction from the frustration that rises at times when I am unable to do as much.
When I started the blog in December 2008, it was at the urging of a friend, who had sat me down to face the fact that while the doctors went about the process of confirming the RSD, I was unable to work and my meager savings was gone.
Since the pain in my right arm had traveled so quickly to impact my walking, I had become unable to even get myself around. I was in shock.
It was her quick action that saved our family in that moment. Having to also battle the agency that doubted even the doctor’s letter, without courage to ask for help to survive those months, I would not have had food for my child.
I sat with her suggestion for a while. I hoped I’d get better. The neurologist had told me not to look up CRPS on the internet, she didn’t want me to become afraid, and CRPS could go away as quickly as it came on. The walking problems caused me to panic. My regular doctor kept calling the hospital to get my next neuro appointment sped up.
By December, I had to consider that there was no other option. Without family and friends sending $25 here or there, some who made larger donations, there would have been no food.
While my own doctor worked to get the hospital to see me sooner, I was left to deal with the panic myself. Utter terror had overtaken me when ‘resting up’ was not eliminating the horrific pain in my leg and arm, let alone when trying to walk. I was afraid. I didn’t understand what had happened before, nor what was happening then, nor why the neurologist didn’t think the development urgent enough to see me. I believe anyone who has experienced losing a vital ability understands that terror.
I was introduced by this same friend to a therapy called emotional freedom therapy. EFT makes use of the same pressure points in acupuncture, adding a tapping that had proved helpful to reduce fear, anxiety and stress. The therapy gave some immediate relief, and has become a very useful tool today to build internal strength.
Yet, it was not enough to stop the symptoms and pain, and nothing was helping me walk.
I took to writing to save myself. What had been started as a necessity to be courageous and share my experience in a letter to friends, now became a way to be courageous more often in writing the blog.
While the doctor’s confirmation process dragged on into the years, writing became more about connecting with other people with similar experiences as I understood what they were going through.
I eventually learned that there were other people sharing their stories, many with worse symptoms, but all with the same type of experience.
I found courage again when at the start of 2011 I wrote that I think the way RSD is treated now leaves a lot to be desired, and started asking why.
I will soon upload the Letter of Courage archive so that people who are at the beginning of the process have access to the writing.
In the meantime, I want to share a new RSD newsletter that I just ran across called the Definitive Link Library for CRPS/RSD.
I am really impressed with the range of articles, but particularly by the author Howard Black. Mr. Black had RSD for 15 years until January 2010, when, for some reason, his symptoms began to diminish and he is now at 90% remission.
Coincidentally, Mr. Black is looking to connect with other RSD patients who have also gone into remission suddenly after having RSD for 5 or more years.
To give back to the community, Mr. Black has started the Definitive Link Library for CRPS/RSD.
Check it out for range of good articles.
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.
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!