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.