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.