February 25, 2013 § Leave a comment
Its been several months. My attention turned towards uncovering and finding out what happened over these last few years, new information that came to light that 1) helped put things in perspective, and, 2) propelled me to advocate for change so what happened to me is different for anyone else injured at a hospital or by a doctor.
I was stunned by what I learned, but, it started to all make a lot of sense. Interviews with disability advocates surprised me in learning that many of the organizations I came in contact have ‘reputations’ and point to serious system wide problem. The problem is, we aren’t talking about defective lightbulbs. We are talking about actions that can cause life-altering disability.
The level of business intelligence, and the use of the doctor appointments to ‘gather information’ rather than help takes ones breath away.
I had to balance my general advocacy with seeking accountability and remedy for what happened in my particular case now that the facts were laid bare. As someone recently said, ‘that’s illegal!’
When the health care system is so rigged, is it any wonder there is so much illness despite the amounts spent on health care?
What the review of all the documentation showed was that while I was experiencing high, untreated pain, there was evidence and knowledge very early on in the process about the damage that had been done and that was spreading.
I had been so stupid to trust. There was no way that hospital was going to suffer any consequence, so that has meant that as the city and state agencies found my care ‘too expensive’ – I have been left to deal with treatments I can’t afford, doctors who refuse to treat me for fear of the hospital, and, without any city, state social or legal support, must ‘overcome.’
Another advocate said only the other day, more people have been hurt and disposed. It’s rather sickening from my viewpoint.
Even attempts to return back to work – paid work – have met with denial after denial by DOR.
I literally cried in the hearing. What do these people want?
To crush me because I am evidence of their liability?
Their wrath knows no bounds.
We now know that they never reported the information to the state or city agencies, which must explain why the agencies decided to say – against the medical documentation I had to fight to even be able to get the MRI’s – that I was no longer disabled (now they are doctors?) or over income or whatever little legal manuevers, despite the law, despite the facts, to make life more miserable for those who had the audacity to walk into a hospital for care and be injured.
I owe a lot thanks to many incredible supporters who have helped me deal with the realization that not only was I hurt at a hospital, but, their reach is so far, they can make my life a living hell.
I owe gratitude for those who have stepped forward to help me transform a difficult experience into a chance for growth, empowerment, and, well, learning more than I ever knew or could have imagined about sooo much! I will be sharing more about that over the next while…
For today, I want to share a few quick thoughts/tips:
A. New RSD Tip of the Day! Much of what I have learned to do to manage the RSD symptoms has come from experiment – today, I want to share an exercise that combines sound healing, touch sensitivity, and, developing the brain to limbs connection.
I have an anklet bracelet that I came across. I looked at it, and thought, ‘oh yeah, in days past!’ One day, after my exercises, feeling pretty good that day, I put the anklet on. I found — for the time I could stand having the anklet on — that I looooved hearing the beautiful music and that the music came from my arm or leg.
I liked that the music was a new, very positive way to be in connection with my right leg, and eventually, my right arm.
I liked the notion of these painful regions transformed into music machines!
As I mention, some days, forget it. Like today, I am having muscle spams in my arm that are quite insistent and repetitive. Yet, these are days when I forgo my routine, when symptoms are more debilitating.
I find my appreciation for those good days – and sounds – only increases on those days I can make a little music!
I wonder how you will feel??
Hummingbird – Sweet Nectar, Sweet Medicine
I have written before about the connection to Hummingbird, and the ancient importance of the Hummingbird to the Native people of the Bay Area.
When we speak of ‘medicine’ – this term can be confusing. Today, ‘medicine’ is most often imagined as a prescribed cure.
Complementary and Alternative Medicine covers many of the Native healing traditions and practices, and is seen as…well, as the tile implies, complementary to Western medicine traditions. No door to healing is closed.
The National Institute of Health offers a healthy start to better understanding Native People’s concepts of health and wellness. Visit their site to watch videos and hear about the Healing Pole that now graces the National Library of Medicine!
Our community was graced with a Healing Pole, and its inspired great discussions on health and wellness.
I have tried very hard to advocate for greater cultural competence here in the Bay Area, especially at the teaching and university hospitals in this region with the third largest urban Native population in the United States.
My own experience led me to advocate for these changes.
EFT TAPPING – LOUISE HAY
I have written before about my experience with EFT, often called ‘tapping.’
Its an interesting therapy that works with the acupuncture points to help relieve emotional blocks that can cause physical ailments.
I like this therapy for a variety of reasons, and for RSDr’s, I think the option of a ‘soft’ vs. acupuncture by needle is very helpful, bringing many of the benefits without the physical pain many patients comment about after acupuncture.
I have also spoken about the impact that Louise Hay’s mediation had in my life, something I listened to and still listen most days.
I was so inspired when I saw a recent video with Louise, learning the tapping technique. She was such a down to earth person, sharing the challenges she faced, and, inspiring with her achievements in personal and professional growth.
Nick Ortner and Louise Hay invited people to share how EFT played a role in their lives by writing in – and well, I submitted my story!
Interestingly, members of my community have begun working with returning veterans as part of a collaborative project to incorporate Complementary and Alternative treatment for PTSD.
Recently, I read that EFT is also being used to help veterans in a pilot project designed to measure and assess its effectiveness as a therapy before broader implementation.
Its believed that we use less than 1% of our brain capacity – still. I wonder, what new advances will we learn about the brain’s capacity to engage in the healing process?
When we look for a positive side to this experience, for me, I’ve been empowered by the healing process, and, by seeing most intimately our medical system, empowered to voice my experience, to heal, to help other people who experience a similar trajectory of care, and, to bring attention to the general need for greater collaboration between patients, doctors and researchers.
August 1, 2011 § 1 Comment
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.
June 27, 2011 § Leave a comment
A few days ago, the weather was in the upper 80’s, a nice treat for me. It inspired visions of driving a short 2 hrs to the mountains by the ocean I love so much.
Strangely though, while the warmth was soothing, old symptoms cropped up again, like the little skin blisters and itching. Difficulty sleeping too after I attempted to drop back from the medication a bit to see if these improvements with the weather could be built upon.
I have been doing my daily mediation in the morning, listening to Louise Hays every day to work on rewiring my brain.
I’ve had been off my right leg for many days now, so yesterday, when I went to see my child off, I felt like I was doing pretty good. Except, I felt like a failure that I could not drive him, and in the morning, I called myself lazy and asked, was I just not wanting to make the effort?
But, later in the afternoon, after an ambitious attempt to organize my room lead to excruciating pain in my right leg and arm, I realized, it was an illusion I could drive that far on my own, and back 2 hours? The pain reached that pitch that literally causes me to fall asleep. Like the pain killers used to, but, all the time.
A few days ago, I used dance as healer, playing a few songs that can’t help but make me want to move. My left side does most of the moving but I coax the right side as far as I can. I miss dancing sooo very much. More blisters came out, this time, on my left side. I had a blood draw two weeks ago, on my left arm, and I’ve noticed now a few subtle changes on my left side. Still, not enough to hold the left side down in a bit of dancing.
I wrote earlier that I was going to share more about a few of the heroes that I want to give thanks. After being turned away from the neurologists, I was feeling pretty down, and confused about this entire process. Then, in the midst of it all, and because my new GP had thought we needed a RSD evaluation from a neurologist, I finally started connecting with other people who have RSD.
I purchased a book written by Nicole Hemmenway, “No, Its Not in My Head,” about her nine-year plus journey through a very extreme case of RSD in her arm that she got as a young, soon-to-be high school graduate. Nicole eventually ended up in a wheelchair.
Nicole had traversed something few people at her age or older ever had, and as is her spirit, she shared her journey with the world in her book.
Nicole Hemmenway walks the walk daily in her blog http://blog.nicolehemmenway.com/2011/06/25/celebrate-good-times.aspx (You can get her book there too.)
I thank Nicole greatly for her courage, and her kindness.
What has been most inspiring in reading Nicole’s story is hearing about her recovery, of her getting out of a wheelchair. She gives thanks to Dr. Rhodes in Texas who has worked with many RSD patients, and others with similar conditions, to bring pain relief.
I spoke with Dr. Rhodes a few weeks back, and, just talking with a doctor who understands, who didn’t assume I was trying to get out of a ‘bad life’ with an illness, who did not make any judgment of me but had answers about the condition, It was Healing right there!
I have also been inspired by Joseph Martinez. You can read more about Joseph’s experience here http://www.dailybreeze.com/news/ci_18130738
Joseph is currently being seen by Dr. Rhodes. Joseph has a very extreme case of RSD because the condition came on by way of a stomach flu, so his entire body was deeply impacted since the RSD originated in his stomach.
Joseph was also experiencing the nausea that I have, and I shared with his mom that honey has been a savior for me. I take it when I go out to avoid any mishap as exertion seems to provoke severe nausea. When it was warmer, the nausea, just from eating, returned.
The honey immediately stops the nausea, and I am able to recover very quickly. Strangely, I have noticed since using honey for this purpose that my level of nausea has decreased overall.
‘It’s not hokus pokus,’ were Dr. Rhodes’ music to my ears. He knew every symptom I had been experiencing for the last 2 plus years, each and every one, not just 2 or 3 he read from a book.
And, Dr. Rhodes was nice. Hey yeah, he was nice. Not overly so in a fake way, but ‘understanding’ and well, let’s just say, I’ve had a shortage of understanding from doctors so I am grateful for any.
Dr. Rhodes, and the patients who have been treated by him, do not speak in any absolutes. Each case is going to be different. No promises. But, understanding, wow, that is half-way to hope right there and that’s the closest I’ve come to the type of doctor patient relationship I had always remembered until this RSD came up.
I am very excited to leave behind the past and move forward.
My last meeting with the new GP was also inspiring. She understood my frustration in not being seen by the neurologists, and she did say she had ordered my records from the previous place but still had not arrived. She said as soon as she had those records, she wanted to find a neurologist in SF to evaluate me. She took more blood, not sure what for, but it seems right she’s at least checking the levels so to speak. Thankfully, so far, everything else is fine with my health.
To get to see Dr. Rhodes, I need to find out whether I can travel and as my GP confirmed, she doesn’t want me traveling until I do have the neuro evaluation. Dr. Rhodes will work with me for five days and then, can work closely with my GP here to continue the treatment.
I am very excited that, soon, I will have some answers about next steps. If I can travel, next steps are – how? How to be able to afford to travel there, and how to afford the machine and other things that the insurance does not cover. I know I have to get there if Dr. Rhodes can make this pain go away so I can resume my life again. Since I dreamt that I will walk again, I believe this will happen and I only need to find a way there.
It frustrates me that non-invasive approaches such as this don’t have coverage while, often other things, with side effects that can degrade health, are approved lickity split.
My limited income till now has forced me to consider alternative ways to healing. Since there is no cure, only pain management available, there is a lot of space in between that is complex and often difficult to understand, even for doctors.
I see from the RSD Canada site interesting research that shows RSD is caused by nerve damage, and there is another treatment with IV that, like, what I am learning, may be related to how much oxygen the nerves are getting, related to circulation.
There is more research coming available every day. In this day and age, it seems that its important that research be put together considering the rareness and small number of patients globally speaking. What about harder to reach places where many may get this tragic condition and face unknowing doctors too?
I am having to consider the realty again of not having the resources to get to the doctors I need. I thought Medicare would be an answer, but I see the politicians ready to punt it down the road.
I’m not even sure I will be able to cover the costs not covered by Medicare, and some days, I think about giving up on seeing a doctor at all. Talking to Dr. Rhodes helped me consider once again that what happened these last two years may recede forever as a memory, remaining only an impulse to make sure it never happens to anyone else.
In light of the upcoming budget cuts coming down in July 2011, I am now faced with a dramatic income shift.
The in-home support and benefits had made these six months bearable where before, getting food, doing laundry, were painful reminders of what I could not do. Reminders of how awful to be stuck on the 3rd floor and how little I get out at all.
The budget cuts for vital disabled services feel like another sign that I am disposable in this world. Only, I know I am not, so I must find another way.
I feel the stress, which pushes me to want to get better faster, making the month in between till my next appointment with my new GP feel almost torturous.
I want to travel to Dr. Rhodes and live the dream I had a few weeks back of walking again.
I am reminded by Nicole’s experience that this is a process.
Dr. Rhodes also makes sure to explain, his treatment is not a cure, its pain relief to allow for the best possible life.
Knowing that my GP is moving forward and can be part of the team in finding a solution is a huge step forward.
Dr. Rhodes said with the relief of his treatment, patients can stop taking pain medications.
Its one of the most appealing aspects of this treatment, and is a great addition to the arsenal I have been utilizing to gain the improvements I have so far: mediation, positive thinking and looking beyond limitations. I have chosen not to take pain killers, narcotics.
In that vein of considering creating the best possible life moving forward, I have been considering what comes next in my career. I’ve sought the support and guidance of a Small Business Counselor who is helping me address both the internal and external blocks.
I have found myself, at times, very sad that I am unable, right now, to physically lead my life as I had before. I’ve had to process this change, a letting go of the past, to be in the here and now.
I’ve also begun to consider how I can work given my physical limitations and I am trying new experiences.
I’m developing the Catherine Herrera Photography online site for sales from my photo portfolio, from which these latest images are a part.
I am now working on a cover photo for a book, which has been a delight of a project. In this assignment, I have set up the images in my studio, instead of running around on the streets.
I am still working on graduation photos, now several weeks in process, rather than what would have been a day to turn around before. I have to let this be ok, but it feels like a pull weighing me down. Perhaps that is why the new approach to my work is inspiring, having the advantage of a different workflow than photojournalism.
In that vein, I have started to look at writing in a new light too.
Recently, I shared with some friends that this condition’s impact on my mobility had the effect of forcing me to sit down, to stop long enough to focus on editing in a way I had not before. Also, writing.
I try to cultivate a ‘present’ moment attitude, and it is from that space that this series, From My Window, began. I’ve just uploaded new images to the series.
I also took the step of applying to the art institute to see if I can take any classes next semester. I have been encouraged by the experience of RSD patients further into the condition who often say ‘pain is not going to rule my life.’
I did not understand this entirely before, but now I do. Maybe I won’t be a student like I was before, but as I have seen so far, art, communicating and sharing my experience with others has been very healing and positive.
The internet has become an indispensable tool for the disabled, or those with illness. A lifeline that never existed before.
I remember thinking in that awful first year how dearly grateful I was to the internet. It provided needed distraction, and it provided a way to still interact on a level that was not in any way ‘disabled.’ I think that’s why perhaps so many have said they never knew what happened, or others who were shocked by the cane and walking difficulties where my voice and person was so clear here.
The internet is a source for information. It is a PIPELINE to Laughter, which became my best friend.
Since I did not want to start pain killers or medications that had varied results, or in some cases, recalls for off-label uses, I had to cultivate a new tool box of devices. Without the internet, my life might have been very different today.
The cold has rumbled back in, and the warm water of my healing bath each day feels divine, like a rejuvenation and soothing spa. Summer, I bring with me the smells and flavors of fruit. This week, with the left over Jasmine flowers from my photo session, the fragrance of a forest, of deep soil, and I smell health.
I like getting fresh mint and basil, now in season, to put around the house, to smell those aromas feels very soothing to me, and gives me an upbeat connection to nature here in this 3rd story perch.
As I contemplate a career moving forward, I must consider housing for live/work. On SSDI, my income is limited and I have had to grapple with that reality. I felt hopeless about it before, and as I begin packing and looking for where to go next, I may feel that way again, but I am trying to simply recognize it and not attach judgment.
I have looked at artist communities in different places, and even considered purchasing a $100 house in Detroit or Philly and joining other artists seeking places to survive.
But, then, California keeps a strong hold, and I wonder, is there a little plot of land for me? I guess the issue of housing, as an artist, has truly always been an issue for me since I moved out of my mom’s home. I was working on the photo series, Landless Indian, at the time I was injured. You can see the work in progress here.
I joke with my grand-aunt that I will have to learn to grow my own food and figure it out like in the old days and she sounds more relieved with the joke rather than worried as she had sounded a minute before. You see. Laughter. Best friend.
I don’t tell her I am scared.
I feel the beating down of the pressure from the social service agency, again. Now, claims that they did not know about SSDI income, which seems odd, so I have sent them the emails clearly indicating we discussed it right after my hearing, and again, when the housing social worker recalculated my income for housing based on both the ssdi and social service aid. What if in-home support is cut? These are the worries that I try to wash away with Louis Hays in the mornings to start my day, but I can’t say it’s as easy to push away in the evening.
I’ve sent proof now to the hearing judge, will it matter? I have learned over two years of these constant battles, often, its a losing one. It’s discouraging on top of the struggle to get my health back.
In speaking to the, now, several RSD patients I know, one recurring theme that jumps out at me is the need to be an advocate within one’s own community. I have provided information on RSD to the social services agency, hoping I would no longer be seen as an ‘enemy’ out to ‘take’ something. The disbelief on their part has been an added and constant burden since the first diagnosis of RSD in 2008.
I was encouraged by the results others have had in bringing greater attention to the experience one goes through after being diagnosed with RSD, and I believe in sharing with the goal, instead of punishment, of greater understanding.
I decided to bring attention to my experience to disability advocates. I did this in part because of the affinity I feel for Veterans, both as someone whose family members fought, and as a result of the afternoon I spent last spring at the Veterans building in San Francisco. You can see images from that day here.
Soon after, I read about Veterans with RSD, who had gone to Congress to share their experience with the condition, and similar tug and pull with agencies meant to help but confused as we all are by this condition.
I am always encouraged by the positive, yet, determined approach of the heroes I’ve mentioned today. What I appreciate about Nicole is her forthright understanding of the very difficult, and often, solo experience RSD brings, on top of the body ‘feeling’ hurt. She doesn’t hide that painful reality, and in so doing, makes it possible for others to see a way through.
I am inspired by Joseph for his parent’s and his courage to visit over 17 doctors in search of a cure for the excruciating pain their son was experiencing. I am rooting for Joseph and his family. I’ve heard from his mom and Joseph is doing very well.
I am someone who is in the common age group of RSD. I am older than both my heroes, still, I am without shame in saying, I am grateful to them for lighting the way forward with their resilience and faith. May they both be blessed with permanent relief from this pain.
Here’s to living in the moment.