Today, our housing support ends.
I don’t know what comes next.
Its been sunny, but chilly. It’s that time of year when standing on my foot is painful, as if my foot bones were broken. Sharp shooting pains come out of nowhere. I feel myself become afraid. I tell myself to relax. Hold on to hope, hold on.
I’ve learned that apparently no one can find the MRI done on me two years ago. In fact, it was December 2009, a sudden appointment with neurology, I believed I was finally going to get help.
That was a joke. I got a phone call on a Sunday evening from the lowest doctor on the rung, telling me ‘you’ll get better.’
I don’t want to think back to that moment now that I have, it makes me sad.
Now, they say they can’t find my MRI. Oh, yeah. right.
I go back over the last year since I was told that the first hospital was ‘off-limits’ to me in December 2010.
I remember driving home with my Dad, in shock that my doctor had said that to me. I was crushed.
I was reviewing some old correspondence in my year-end cleaning. I came across emails I had forgotten. Twice, Stanford lost the first referral from my GP.
I was so distraught at the time, it seemed like more of the same from the first hospital.
It took my mom calling to ask that Stanford see me. They finally agreed. When the specialist said he knew exactly what happened to me, and told me about a patient of his in England who had just started Graduate School, I felt so hopeful. The nightmare was over.
Then, my medical files from the first hospital were ‘lost.’
No one could find the file I sent by email even though the file never bounced back.
I kept calling, I sent it over and over by email as they asked me to do. I even sent it by registered mail in time for our meeting. But, they didn’t want to talk about the MRI.
At all. Now, the MRI is lost.
I think back to the last appointment. I was told that I was ‘rude’ because I kept calling, and was anxious, that my medical file was lost.
I was told if I ‘do that again,’ I will be prohibited as a patient. Again.
Now, my MRI is lost, no one knows where it is. You can guess I’m not about to call to try to find out.
Ironically, since my dad is a doctor, I sent him the same medical record, and he reviewed the MRI himself. In fact, we talked with them about the MRI, and what he had seen on the MRI, in the meeting.
I mean, I was asking them if they didn’t want to perform even 1 (one) test at all???
Of course, what am I to do now? I can’t call chasing down my own MRI, otherwise, I might be ‘banned’ from the specialists.
Another symptom that has been spiking recently is the incessant pins and needles and itching. Its awful when it spikes at night, making it hard to sleep.
I’ve talked enough on this blog about how I’ve used the warm water (sometimes, hot) as a method of pain control and management.
Over time, I’ve added and experimented with various herbs. I’ve added ginger for inflammation, honey for soothing skin, lavender for relaxing, Epson Salt, and even various anti-oxidant fruits.
This month – Oatmeal!
I’ve added Oatmeal to see if it helps calm my skin in general, or if its more of a ‘spot’ treatment. Since the itching is often worst at night, I may just have to try a late night Oatmeal soak.
So far, I still had itching last night, but I’ve found relief during the day with the Oatmeal soaks so give it a try if you are so inclined.
Well, it has been a year of little progress on the treatment front. And, as I said, we’ve just lost our housing subsidy. While the delays piled on, lost referrals, lost records, lost MRI’s, a whole year has passed, and I am no closer to knowing what is going on or how to access treatment.
I hear people in my RSD support group talk about the testing and treatments, but none of those things are ever offered to me. I called an expert to find out if he can talk to my GP to find out what is going on.
Through prayer and alternative treatments, this year has been a HUGE gain. Spiritually and emotionally, I am a lot stronger within than last year feeling crushed when I was told in Dec 2010 that treatment access was never going to be offered at the first hospital.
The trauma of the last 3 years, of having a medical system that not only hurt me, but pushed me under the rug, attempted character assassination, gathered intelligence rather than help me, the entire experience was a huge lump that sat within me.
It’s a trauma I’ve never known.
It opened my eyes to the Tragedies in Health Care occurring every single day.
Even today, I hear about another woman with RSD who is losing her housing.
The other night, my son brought me to a bawling mess.
He shouted, ‘if there is a Creator, how did he let something like what happened to you happen?’
Alone, in the dark of night, I looked up to the sky and asked Creator, ‘how can we restore my child’s faith? Please help me because I do not have an answer for why this medical system has been able to get away with what it has.’
This horrendous process, from the moment I got hurt up to lost MRI’s today, has shaken the faith of a woman who was embarking on the job of a lifetime, and a 10-year old who watched mom get stuck in the arm with a needle, heard the bear cries into the night, and saw as the rest of our world came crashing down when soon I was unable even to walk. He saw what the medical and legal fields offered by way of help.
The alternative healers worked on me to remove that trauma so that I can grow strong again. Where every visit with the hospital was soul crushing, the work with the alternative healers offered positive discussion with the illness, and sought to mediate the damage of the trauma on my spirit and emotions. I must be strong so I can prove to my child.
I pray to the Creator to please help me restore my child’s faith in this New Year.
May you have pain-free days and walk a good road towards healing, and arriving at peace.
Happy New Year!
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.
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!
Another post without photos. An update of sorts I suppose is in order.
I am totally confused and feel like I have no one to ask for help in understanding this disease.
My doctor never called to explain the PT findings of nerve damage and muscle weakness. My PT was given approval to work only on my leg, not my arm.
Why ignore my arm again, the site of the original injury, when nerve damage in my right arm and leg is found by PT?
For the last two years, just like in the report that came back from the State, my arm and what happened is erased, like it never happened. Despite confusion about whether what was going on in my leg was CPRS, there was never doubt about the arm. I kept asking why I was not receiving treatment for the CPRS in my right arm.
I asked the State investigator why she didn’t want to speak to the witness that was in the room that evening with me, who saw the immediate pain and tears, and heard the nurse say he hit a nerve. No, none of that information is ever revealed, in fact, they say I was never even harmed by that needle. They said nothing happened to me there. I have a witness. No one cares.
The PT had me do an exercise with photos, which you can imagine, I did pretty well on. Except for one angle that seemed to send my brain in a tailspin, literally, I just could not process that particular angle. My brain sped through all the photos until that angle threw it off each of the three times we did the exercise.
Since I did so well on all the rest, I was told I graduated, and this week, we will do mirror therapy.
CPRS therapy without a CPRS diagnosis. After two years of fighting, insulting me and saying I was basically crazy and making this CPRS up despite a diagnosis in my right arm in October 2008. When I think about the stress and pain the doctors themselves caused, I am beside myself to think this is allowed behavior from doctors.
My dad said doctors have the right to deny treatment to patients. My dad and I are not speaking now. Perhaps we never will again. I said he owed me an apology, and so did the hospital.
I feel bad the hospital sends in a student PT, after all the hearings, and struggle, their denying access and causing delays, they send a student in to do the work. I told the PT I didn’t blame her, and I knew she is gathering more information about what is going on in my brain.
The PT agreed that until we know about the nerve damage, we are working in the dark.
Why would I be treated for CPRS if there is actual nerve damage? Can doing mirror therapy heal nerve damage if it’s there? I mean, is my brain working well or is it not? If I have an injured nerve, doesn’t it make sense my brain was registering pain?
Of course, there is CPRS II – with nerve damage.
My PT can’t refer me for the necessary medical team support required to figure out.
I guess my insurance doesn’t want to pay for neurology, pain management, pain psychologist, EMG, these are all the standard medical support offered to a CPRS patient.Why else would they deny these services right from the start, delaying my treatment now two years, after one and now, it appears, two diagnosis’ of CPRS? The insurance receives Medicaid money for the service they provide. Is there no oversight? How much Medicare money was spent to not treat me for two years?
Yes, ok, my fault, bad person. I did not spend the extra money I didn’t have on health insurance. The insurance I have now is for low-income people who can not afford insurance, the insurance administers the Medicaid dollars.
I have been waiting, counting the days until I get Medicare, so I can leave this hospital all together.
Nobody is going to stop these delays and unethical tactics of a hospital doing all it can to protect itself, they get away and got away with this for two years already.
I called the specialist who is also a neurologist to share what the PT found. This is the specialist who takes Medicare, and whom I had planned on traveling to see on April 1 when Medicare goes into effect.
What I wanted to find out from a neurologist – since I have no access to one now – was, if there is nerve damage and muscle weakness, is it possible I don’t have CPRS at all? Is it possible my brain is working fine? Registering pain from nerve damage? Yes, and Yes.
Catch: The specialist said I have to get to a neurologist before I can travel, and before April.
This information sent me into a tailspin. How can I get to a neurologist? It’s not like I can refer myself.
I can’t even get them to follow through on the wheelchair so I can get myself around. I have told my doctors that since last July its become so difficult to walk that I just don’t. I have been trying to get a wheelchair since last July. I even brought an administrative hearing to get it. Oh, the judge ruled in my favor, a wheelchair prescription was issued by a doctor I don’t know, without instructions in December 2010. When I asked my doctor why she had not prescribed the wheelchair herself, she said because “you were in such a rush and I wasn’t here that day.’ When I asked for the instructions so I could order the wheelchair since only a prescription had been sent, she said I had to contact my insurance. I did, they don’t call back.
I can’t refer myself, what can I do? Is there no one who looks over the behavior of doctors and hospitals? How does this happen? I was diagnosed in October 2008 with CPRS in my right arm. I have not been seen by a neurologist since April 2009, and once again briefly in January 2010, when I was told they would not see me again until pain management saw me, and well, as I have said, even going to the pain management office in tears begging to see a pain specialist, didn’t make a difference. I have not been seen by a pain specialist either. After insisting to know why, I was told I was ‘barred’ because of my behavior.
It’s just me and the student PT now (she does have many years of experience, six, and she is very nice to me).
The PT said she looked all through my file for any mention of me being barred, and nothing! Presto. Gone. Don’t worry, I say, I have a copy of the letter, and a witness that heard the doctor tell me I was barred from neurology.
This is not the first time my records show something different from what happened. Their files say I was seen by a pain specialist last July, I was not. The files say I ‘missed’ appointments when I did not. Why would I have avoided seeing a doctor?
But, it sure adds to a great story: woman misses appointments, complains of pain of unidentified source, makes scenes claiming extreme pain. ‘We had to bar her.’ Shouldn’t hospitals be barred from turning away patients?
My dad said I wasn’t being turned away, they are giving me PT. o.k.
I forgot my honey last week when I went to PT. Sadly, I was not able to get out of the building before nausea overtook me, and I was embarrassingly sick right there. The PT overseeing the student PT came out to the hallway. I begged her to explain what is happening to my body. She told me to breathe. I did. One more embarrassing scene in the lobby as we made our way to the taxi.
No phone call from my doctor. No follow-up. I am being given PT -finally – for CPRS, and no one has called to even tell me I have CPRS in my leg. After a year of checking every other cause – my doctor even telling me ‘don’t go chasing the big money on CPRS’ – all I get now is PT sessions for CPRS.
And, if I do have CPRS, its not CPRS 1 – its CPRS 2 with nerve damage.
How do I handle this? What do I do now? The fear, sadness and then, anger – I allow it in for moments only, I must not let this take over me. I pray. I pray a lot. I light a lot of sage. I visualize someone seeing what has happened and giving a damn. I visualize a warrior, a medical overseer who will see what horrible experiences have occurred since being hurt at a hospital, someone who will notice I went in for a urinary tract infection and now I can’t walk.
I can’t walk.
I push that aside now. I must go on now with the day. My leg hurts a bunch, it started straight from the morning, the veins in my right foot push out, and there are remnants of the bruises that come from walking to PT last week. I also tried one work assignment, a photo assignment for a book idea someone presented to me.
This assignment, and my other one preparing for the installation, these give me simultaneously hope, and at times, wonder at how long I will be able to do even the little I am able to do now. I focus more on the hope and the excitement I feel in working at all.
A while back, I took photos of my bruises, the different lesions. I sent them to my doctor. She said nothing. Not even nice pictures.
Today, I better push aside the feeling I have been treated worst than a dog.
Let it go now. Time to focus on something else.
Any neurologists out there who can do pro-bono work?
No photos today. Getting ready for my first physical therapy in two years.
Starting the bath, soaking helps with the pain, and calms me. I want to aid myself as much as possible by being in a good space. To bring the strength and resolve I feel when I am not dealing with doctors, without bringing it. I am scared because my general physican said last that the hospital was pretty much off-limits to me. So, what can the PT do?
I want so badly to get better. I can feel myself walking again, and I want to make this a reality.
Apparently, this condition is meant to teach me patience. All the healers, doctors and not, who I visit to find healing, they all say, ‘its going to take a while.’
I do not expect an immediate solution today. All I pray for is real care, real concern, and real knowledge. I know that the doctors may not have answers, but, then tell me. I can be a partner in the discovery because no one wants healing more than myself.
I do share a bit of hope today. I found this week a doctor who is very knowledgeable about CPRS, and, in fact, she specializes in the condition and is up to date on the research. And, she accepts Medicare so in April, when I have it, I can consider going to get her evaluation. Several patients share their dramatic decrease in symptoms. I heard the word reversal, – poor doctor! I cried, could barely keep back the tears. To not have this condition any longer…wow….
Also, there is growing evidence that CPRS may be an issue of inflammation. I have gotten fresh organic ginger to make tea. Knowing that could be the cause, there are many ways to address inflammation with food, with teas. I need a nugget I can hold on to, to work with.
The PT is someone who can tell me more information, and share how to exercise to live the best possible life if I have this CPRS, if I can’t get healed…ifs…
I know I want the wow, but only time will tell…patience my dear girl, patience.
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.