Letter of Courage: #9 Lessons
I am still on this journey of healing, more tests, more doctors appointments.
Improvements, setbacks, fighting courage, resignation. Acceptance of the present now.
Raw foods, nuts berries tofu too, my green tea with honey and apple cider vinegar, and aloe vera every morning.
I tell myself I have all the medicine I need. Whatever is available to me, accessible, that is exactly what I need to heal. I do not think of lack, I think of plenty and just right.
I meditate. I tap on emotional spots to achieve freedom. I set out to do my morning exercises. I tell myself my little exercises will build up into one big exercise session and soon, everything will snap back into place.
Trips to the doctor and hospital for tests, brief dips into a world of white coats, shiny machines, no answers.
There are not enough Native Americans to make a category for bone test comparisons. Choose. White, African American, Latino, Asian. I choose the most convenient, I lie down and let the machine do its work.
I wonder later why I don’t feel like doing anything, I know I am pushing off thoughts, begging away consideration.
If they never identify us, how will they ever build up a body of medical knowledge about Native Americans? Let’s just consider it scientifically.
Emotionally, its harder to explain away. In its strange cloak of fairness and objectivity, why does this feel so subjective?
Perhaps this is the medicine I need today. After all, it got me writing.
Letter of Courage #8 – A series of drawings
I began this series of drawings in 2007, after several years of not drawing or painting, the longest I had gone since I first started. Drawing and painting have been other mediums of expression, walls to bounce off of when video or writing or photography wasn’t quite the medium to capture what I was trying to share.
The last year has been such a challenge physically, as the doctors work excruciatingly slow, and sometimes, not at all, to figure out whether an initial diagnosis in October of 2008 of RSD, a rare nerve disease, was correct. The process has been terribly eye opening as I passed through the health care system that seems structurally compromised, a weight bearing on me as a patient that I had never in a million years expected. The physical pain was exacerbated by the pain of having a rare condition that not many understand in a system intended for diseases that can be cataloged and billed out. Without much health insurance, and no disability insurance, I have had to manage healing as best I could. Its a journey that has required self-examination of health habits in myself, and adopting any new habit that can help in the healing process.
The healing of my spirit from the injury when the needle hit my nerve was another journey. Drawing became my tool, a way for me to distract my mind from the high pain levels I was experiencing. A drawing often took a week or more, with me adding a bit here and there when I felt well enough. Every time I sat at the table, I’d open up my drawing book, an outlet for me to distract from the crippling, burning pain in my legs, and arms. I believe the drawings, which I see now as possible initial sketches for future paintings, has been a salve in the recovery process.
I share them now with the hope they can be curative or healing for others who experience RSD or any chronic pain issues or who are moved in any way by the images.
I want to thank Xavier Quijas Yxayotl for use of the song Music for The Full Moon, from his CD Pearl Moon. Xavier is an inspiration for me, after several meetings at events, I have come to admire Xavier’s music and the hard work he and his wife, Candace, put into sharing music for the people with the people. Support his work with the purchase of a CD and enjoy the tunes that have rocked people at concerts around the world!!
As I continue the wait for treatment, nine months after being injured, and being diagnosed with RSD, I have not sat idly by. No, that just would not be like me. I have continued to seek alternative ways to heal, turning back to older traditions, seeking out new, and in general, figuring out – what is life like if one is disabled?
I walk a fine line. I have my belief that I will be better, will walk just like before (hey, I am feeling some improvements) and dance (I listen every day to the songs that make my body remember the steps I have danced before), and having to deal with where I am right at the moment. The heartache of treatment in the health care system recedes as I no longer look towards it to heal me. So, I walk that line, trying to see a bright future ahead, and dealing with the challenges that I face today with the RSD.
I am looking out, in to the world. I notice more the people like me who use canes. Most are older than me, and often they look at me as if to say, or sometimes they just say, ‘you’re too young to use a cane.’ My sentiment exactly.
I began seeing artists I had never seen before either. Disability appears to be nothing for stopping the people I learned about in the last few months.
I stumbled across The Art of Possibilities Studio founded and run by artist Ketra Oberlander, an amazingly inspiring painter who lives by the credo that she doesn’t “have any business deciding what I can’t do, people cheat themselves out of all sorts of opportunities because they think they can’t do something. Well, what if they can?”
Aside from being a painter, Ketra was awarded the Micros to Millions grant, an incubator program for business development through the Count Me in for Women’s Economic Independence Initiative. Ketra’s business plan for The Art of Possibilities Studio outlines how APS can offer exclusive representation to physically disabled artists via licensing partnerships for all kinds of products.
ABC Local Station 7 in the Bay Area did a great report about Ketra’s work as a painter, and as founder of The Art of Possibilities Studio. You can see the program by clicking on the video on the left hand side of the blog.
I suppose when one goes looking, one finds.
Recently a good friend CB Dahl-Smith, who does amazing work with youth, and as a producer through her company Community Bridge Video, introduced me to her friend Leroy Moore, founder and hip hop artist with Krip Hop Nation. Leroy Moore is an advocate for disabled hip hop artists around the world, so when he sent out a call to Hip Hop artists around the world: send in a track that didn’t have swearing, didn’t put down women, and had positive lyrics that opened a window into disability, the response was wonderful. Leroy Moore gathered the artists’ work in a two-CD compilation available from his website. Mr. Moore also did a three-part series on KPFA radio about Hip Hop Artists with disabilities.
Inspiration comes from far away too. In China, the 7th Performing Art Festival for Disabled was held in May at the Art Performance Center in Lluzhou City of China’s Guangzi Zhuang Autonomous Region in the Southwest of the country.
- A handicapped artist rehearses on the Performing Arts Center stage in preparation for the 7th Guangxi Joint Performing Art Festival for the Disabled.
- Letter of Courage #6: Sunshine, MRI’s and the future
- I really appreciate the support people have shown me throughout these last six months, for helping me keep the faith.As I mentioned in my first letter, I was encouraged to write about my experience by people who were around me as the illness unfolded. In great part, I realized I wanted to write about my experience with RSD because of those months when I was very alone in the process, and terrified about what was happening to me. It was also a time when, unfortunately, the health care system itself was but one big locked building, lights out, and no one inside who could help me. I just want that one person out there, who may be entirely alone in this process, to have someone who knows what they are going through. It was people who shared their stories that helped me face the terrifying circumstances.I remember forcing myself to go vote last November, a month after I was injured. It was a chilly. S.F. late fall afternoon, I waited for the bus, and tried not to cry from the pain in my arm by the bus’s movement. In the late nights when I could not sleep, I had studied how I was going to vote on everything except the President, that one I knew by heart. I tried to vote as quickly as possible and not grunt so much with pain. I got myself back outside, and stood on the corner for the bus. The street in front of the fire station where the neighborhood voted was otherwise dark.The cold S.F. wind picked up even more, each second felt like an hour. RSD impacts the body’s nerve regulator, cold can be excruciating, and that night, it was enough to bring me to tears as I waited, and waited, and waited – not for a chance to vote – but for SF’s notorious Muni, which pulled up an hour later. Also not a city known for a reliable taxi system, forget catching a cab. I knew I would not be able to walk back home. I had never felt so stuck after just exercising the greatest of freedoms.Now, I am super careful about finding myself outside in the SF chilly air, and about getting around. I try to make sure I don’t get stuck again.These last days have been warm here, near Spring, a reminder of Summer. The warm weather makes it possible to actually move my legs, even if painful, I CAN move my legs. I think about moving to warm regions where I will always been at walking temperature. I think about 365 days of near sunshine.
- Rain is predicted for tomorrow.I am happy to report that the MRI has been moved up! I never thought I’d be so happy to have an MRI, but I am – greatly. We’ll learn whether there is anything in the brain or neck that might be causing the walking difficulties. I always have hope in these times, just before the tests, just before another explanation.But, as I mentioned in my last post, apart from the health care system, I need to find another way. There’s gotta be another way, a way that makes sense to me. A way to health that seems to actually be in touch with my whole being, my spirit, mind and body. I intuitively sense this is the only way. Its why I have been approaching my experience from so many fronts, from making healthier lifestyle choices, to dealing with the stress through relaxation and mediation -which comes very much in handy at times of extreme pain – and meeting with a therapist to talk through the stress and frustration over what happened from the day of the injury till now, and connecting with healing people who share similar spirits.I need a health care system that connects the dots, in addition to our excelling at individuals specialties. My intention is only to share my experience, my opinion as a result, but not to criticize the medical profession which is clearly filled with people who work hard, and are under incredible pressures that are often not based in medicine or healing.
I have begun to work with a new healing technique which I look forward to sharing here. I believe this system may very well have some of what I am seeking in my healing process, and may be useful to you too.
More about this soon.
In December, two months after I was diagnosed with RSD, broke and practically homeless, a friend called me to say that she had been sharing what happened to me with a friend, Samuel. Having lost his father to a misdiagnosed health issue, Samuel wanted to share his experience with me so that I would be proactive in seeking access to care and treatment.
Since then, Samuel has checked in on me at times, sending me suggestions, always at the right moment, for resources to help me remain strong. So it was his email arrived this week after seeing the neurologist.
I am told that the MRI on my brain and neck will be moved up from May, and that I am going to be transferred to an RSD specialist, six months after the initial diagnosis. I have been told I will be transferred back to the hospital where I was injured and originally diagnosed, so that I will be able to see the neurologist more than once a month.
Do I sound as one of little faith? Perhaps its little strength, to fight what feels like a mammoth system that could wind me up in knots with legal briefs till the day I die. I have decided instead to seek alternatives, to improve my own health, and to activate the ancient knowledge of old times within my body, mind and spirit to heal myself right out of what I am being told are the options for my future.
I don’t understand why I have this disease, but I do know I can at least try to educate myself and others about the experience.
According to the “McGill Pain Index,” the pain associated with RSD ranks among the highest degrees of pain a patient endures. Out of a possible score of 50 (50 being the most severe pain), RSD scores 40 points compared to childbirth at a score of 32, cancer at a score of 25 points and fractures at a score of 18 points. Considering the severity and scope of RSD, it is hard to understand why many government agencies such as Worker’s Compensation, Social Services, etc., are still relatively ignorant of the suffering that RSD victims endure.
Samuel sent me this site, which today has been a god send for me – its called For Grace.
For Grace is a site started by Cynthia Toussaint who has had RSD for many years now. According to Toussaint, it is uncommon for more than one family member to have RSD, which is usually sparked by an injury. After the person has an injury, the nervous system sends a message to the brain notifying it of the pain. Unfortunately, RSD patients continue to get the message of pain sent to the brain.
‘With RSD, that message can’t shut itself down. It continues to amplify and the injury heals normally, but the pain signal never goes away,’ Toussaint said.
RSD is a curable disease only if it is caught within three to six months of the injury where it can then be treated with nerve blocks and physical therapy.
According to Toussaint, many RSD patients don’t get the care they need and are not diagnosed early enough.
This week marked six months since I was diagnosed with RSD. As I come to realize that the system in which I was hurt will not place healing as a priority, I need to seek out alternatives. I have faith I will be healed.
For Grace offers a powerful resource, which tonight, gave me hope in the face of the largest challenge I have ever faced. I realize I must start informing, and educating myself about RSD.
Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome, is a debilitating, chronic pain disease that, if not properly treated, often leaves its sufferers confined to a wheelchair or bedridden.
The disease typically begins after an injury and, in fact, it was first discovered among wounded soldiers over a century ago during the Civil War. RSD is caused by an overactive nervous system and is estimated to afflict between 1.5 and 6 million people in the United States—exceeding those with breast cancer, HIV/AIDS and multiple sclerosis combined.
While RSD is most common among women, it does not discriminate on the basis of age, race or gender. It can happen to anyone at anytime.
There are several progressive stages to RSD
and it can spread to any and all parts of the body.
Severe, burning pain is the most common
symptom. Sufferers describe the pain as if
“doused with gasoline and lit on fire.” Even simple sensations such as a gentle breeze or vibration
can send one into spasms of unrelenting pain.
To date, the only chance for a cure is with immediate and aggressive treatment by RSD experts, which rarely occurs. Otherwise, as the disease progresses, the effectiveness of treatment sharply drops off.
Those with RSD often suffer devastating personal, financial and social hardships. If the disease is left untreated, the sufferer can expect a lifetime of pain and disability, abandonment by family and friends, financial ruin, social isolation and depression. All this makes life with RSD a supreme challenge.
Always a fighter, I suppose I was given the fight of a lifetime.
I am going to begin exploring alternative treatments and learning more about this world I knew nothing about six months ago. I realize that I have been forever changed but I still have the ability to transform.
I accept the challenge.
I have not wanted to write about the harder side of RSD or the experience I have been having in the health care system. I have wanted to be strong, to show everyone I can see the silver lining, to be brave like so many others who face even more daunting challenges than I. I have wanted to go on with my life, creating a new one with the current reality before me as just another part of the journey called life. I have done those things.
Yet, as the friends that encouraged me to write about my experience with RSD and the health care system have reminded me, not sharing the challenges eliminates the opportunity to connect with other people and hopefully, inspire a larger discussion about the health care system in general.
It’s always a fine line to walk, between remaining upbeat and hopeful about healing, and ignoring the experience lived in the present. I believe strongly in the philosophy of living in the present, and that, piling buried feelings about the illness on top of it all can only lead to more physical problems. So here it goes.
My family and I have faced a huge challenge since I was diagnosed in October with RSD. This experience has affected every aspect of our lives, from the financial – which was already tenuous as a new business owner bumping along the lead up to the financial crisis – to our housing, our relationships, and our overall life style.
Unlike many people, I was diagnosed with RSD immediately given the proximity of being stuck in the arm with a needle during a routine blood draw at a hospital and the extreme pain in my arm that developed right away. So, in this respect I have been lucky. Many people do not know for years that RSD is causing the extreme, over-the-top pain they are feeling and I feel deeply for what they are going through.
During that first appointment when I was immediately diagnosed, I was also fortunate that my doctor made crystal clear that RSD is not a psychosomatic illness as thought up until ten years ago. I had no idea how important that piece of information was at the time, but it became clear later when even health care professionals without updated RSD information would look at me like perhaps I was crazy.
I can’t tell you how painful it was to hear the former head of a major metropolitan hospital trauma center caution my friend against me, warning that I was instead having mental problems. It was his professional opinion that the diagnosis was a crock of s – – t.
What struck me at the time was – if he thought the diagnosis was bogus, why would he warn my friend about me? As if I had self-diagnosed rather than the professional medical diagnosis of a doctor from one of the top neurological centers in the country. Why had he not cautioned my friend about the doctor who made the diagnosis?
I wonder, how many other top medical professionals react the same way around the country?
Thankfully, my friend and I were able to talk together about the experience, and reflect on how many people have similar experiences, how many people receive flippant, prejudicial, uneducated advice from medical professionals unwilling to examine their own responsibility within the ‘health’ care system.
The trauma center doctor is just one more reminder of how unhealthy our health care system is now.
I have an appointment today with my doctor. I am supposed to get the results of the EMG test taken two weeks ago. The doctor who did the test said he found something that could be good news in the scheme of things. The electrical jolts through my nerves and needles stuck in my muscles revealed something in my neck region that may point to another cause than RSD for my diminished ability to walk, something that is treatable, curable. This is the news I want to hear. The RSD in the arms, that’s one thing, if I can regain my ability to walk like before, I will feel blessed.
The EMG results were encouraging, although he said he did not want to give me false hope. He wanted me to see the neurologist right away, but I already had her earliest appointment two weeks away since she only came into the public hospital once a month.
I emailed my doctor to share with her the test results, no answer. I wrote to ask how I should proceed given what the EMG said about making sure not to cause any strong jolts to my neck or whiplash, which naturally was concerning. The Health Plan said it would approve me returning to see my doctor back at the private hospital where I had originally seen her, so I wrote her an email, no answer. I wrote her again last week as my condition grew worse, and I felt a horrible headache for several days. No answer. It’s been that way for over three weeks, and really, even from the start.
The EMG I took two weeks ago was originally scheduled for me four months ago, when I was still being seen at the private hospital where my doctor works when she isn’t visiting the public hospital where I am now, where I was transferred because of my health insurance. The two times I was seen at the private hospital after being injured there, I was given immediate doctor and test appointments, with practically no one in the waiting rooms with a view of Golden Gate bridge, all of Golden Gate park and the ocean. If I had been allowed to stay there rather than transferred outside to the public hospital, we could have found this issue in my neck sooner, and maybe I’d be walking again already.
I am embarrassed to say that it’s taken me until now to fully understand what everyone else is saying between the lines to me. I am on the poor people’s health insurance, Medical, essentially, one step up from not having any insurance at all. I also hear clearly now, my position within the health care system is my own fault.
Since I am quite a smart individual, its doubly deserving since I chose to dedicate myself instead to art and film rather than the lawyer I could have been, the upstanding citizen to make my parents proud that I trashed to work independently in the media.
So, for the last four months, given the huge error in my health insurance judgment, I was sent out for all kinds of physical therapy, tests, and procedures, and even to a mental health professional for the stress, rather than the EMG test that could have staved off months of utter upheaval in our family life in all the ways I’ve mentioned. Each test and procedure and therapy keep pointing back to the need for the EMG.
These painful trips to the hospital for tests and therapies are reminders of what I did wrong. If only I had had private insurance and access to private health care, no one would have thought my time was expendable. As the time goes on, my income only slowly rebounds from zero over the months I could not move my arm, to barely surviving now that I can’t walk.
Everybody is making money off my illness while I am sent home to soldier on with the pain that no one seems to know anything about or even how to cure after over a 100 years. Why has it taken so long to find out anything? Numbers. With only 9 million people in the U.S. diagnosed with RSD, who could really make much money anyway on finding a cure?
In this health care system, I am a simple number, and not a very valuable one at that.
I’m told it’s my own fault because I didn’t have medical insurance. It’s the card that lets everyone out of feeling bad in seeing the change from a friend who walks to one who doesn’t. It’s the card that the doctors must scan as they dole out appointments. Its what people will say when many millions of Americans are gone from the disease called lack of health care to which no one can find a meaningful cure. How many will we lose? Will I be one?
I get it, I know, by the rules of this system, it’s my own fault. What can I say to that? Does it matter if I tell you how awful it feels?
I suppose not since millions of Americans have come before me, picked off one by one. No one talks about fault then, at that point in the chain of responsibility it becomes no one’s fault. Interesting how that works.
When I read about the special day designated now for chronic pain sufferers, I feel angry to see the sponsoring drug companies, and complicit regulatory agencies. All I see is a system created to push through diseased profit regardless of the cost to human consumers, smiling while leading us down the plank for which the drug companies and health care system are the ultimate rescuing white knights with a medication that might cure me before I die, or another test or procedure that can lead to more medications down the road we are supposed to travel together. I don’t bemoan the pain community, I know connecting with others experiencing the same thing is so valuable.
What can I say? I am in pain. My income shrinks to nothing, and their’s grows. My family falls apart and their’s grows stronger.
Well, perhaps this is the case, or just the emotions of someone who has experienced what I have, but thank god, my brain and heart still function.
This is what I didn’t want to share with you, this side of the experience, the part that is so terribly painful, and eye opening. To be one more person the health care system doesn’t care about because I don’t have money.
I am told to advocate for myself. I hate that word ‘advocate’ now, especially on those days I feel so bad its all I can do to make it through the day without crying like a baby.
I don’t have enough woman hours in the day to ‘advocate’ for myself as required by this mammoth system that can only be opened with the magic word. Cash. I don’t have.
After the tears dry, and I readjust my cap, keeping in mind the next generation and that the show must go on, I say, now what? Now what?
I am beginning to believe that the only hope for me is leaving this ‘health’ (income) care system in search of a larger answer. I want to walk out of this illness so I am going to look for what I can find to do so. I will share my results here.
As I went out on my daily journey, walking becoming my measurement rather than exercise now, I began to think about mobility, my own.
To understand me is to know that since I could afford a car, I have always had one. For me, the car symbolized freedom, and the luxury to travel, to see the world, or at least that world close enough to drive.
My car had also been a refuge, a vessel that delivered me to the ocean on sunny and even on stormy days. I’d drive the coast and feel sure I was on the edge of the earth, knowing I lived on this dramatic land called California. Driving, I saw the Pacific rush by, with crashing waves sometimes reaching up high enough to remind just how close to the edge we really live. I could be on the edge at the edge of the world, that world in which I could drive.
Here I was, taking baby steps, shocked when my legs did not move as I had always known them to move my whole life.
How was it that I ended up so very limited in my mobility?
As I look at this RSD diagnosis and experience, seeing it as yet another journey in this life, I ask, why? Why did I need to be brought to the point where I was immobile?
To distract myself from my legs, I turn to look at everything along my path. Its been a warm winter, just a few weeks ago it felt like summer. I see the honey bees are out early, swarming in search of honey. I see the apple blossom tree blooming and wonder, what will happen with a cold spell? Would they be confused with a freezing, foggy San Francisco winter day? Only, this is February, and we still have yet to have a real winter day this year. I wonder, what is happening that winters are warm in San Francisco? I bet we’ll have a real foggy summer.
So here is my lesson today. Remember to stop and look at what is right in front of me. Present. Today.
I guess, now, I stop to smell the roses, and pay attention only to where I am today. Rejoice if I have a good day, and can practice walking without a cane. Care for myself on days when the pain in my body presents a view of nothing else.
As a dear friend has always said, ‘onward and upward!’ Aho.
Several people have asked me to share more information about RSD. A few have asked me to explain what has happened to me over the last four months. I suppose I have been reluctant, in part, because I believe its important to move forward, and not live in the past. Mainly, I think a part of me feels if I write it down, its more real than keeping it to myself. Why it might seem better to ‘hide’ what is happening is a topic for another entry. Right now, while I have some courage, I better just write rather than think too much only to talk myself out of sharing.
In October 2008, just as I prepared for one of the most important events in my year, a four day gathering, I began to feel very tired, and wondered if I was coming down with a cold. I begged off the night of camping, and said I’d catch a ride the next day. Waking the next morning, I still felt very tired and slept another few hours before my friend woke me up to say he and his girlfriend were heading out there and could give us a lift. I was grateful, jumped out of bed, and began making a list of all that I needed to pack: sleeping bags, tent, flashlights, wool reboza to keep warm against the frigid winds that came off the bay in Coyote Point at that time of year, food for the now three day trip, and my clapper stick, abalone shell, my necklaces. Yet, within a short time, I realized that I was spotting blood and called my doctor. She advised me to go immediately to the emergency room.
We had just moved in to a new neighborhood, within a good walking distance to the school, such that I had been walking a strenuous hilly S.F. trek in the mornings and afternoons. I was feeling great, eating lots of salads, with visions of a sleek self by summer as I’d end my walks at one of the highest points in the city, looking out to the great Pacific Ocean that lines this coast. My doctor confirmed my good health is shortly before that – decent/good cholestetrol, no diabetes, healthy eating habits. Definitely, I still had some bad habits, but I was on the road to change. After all, I am at that point in my life when the Chinese speak about needing to change one’s path for ultimate health.
So when my doctor suggested I go to the ER, I listened and took a cab to the nearest hospital ER. A diagnosis of a urinary tract infection was simple enough, so I was surprised when the nurse asked if he could insert an IV. ‘Why,’ I asked. He told me the doctor wanted to run some tests. I suddenly wondered why they wanted to run tests. I told the nurse that I was fine with having my blood drawn and did not want an IV. I also mentioned that I did not feel comfortable going through so many tests when they had already made a diagnosis. Well, they wanted to be sure, to make nothing else was wrong. I did want to know if there was any other problem, of course.
Yet, I also felt kinda embarrassed to be given any more time in the busy ER, sure more serious patients needed ER care. I shared that I was sorry I had been referred for something I could have seen my doctor for on Monday. The nurse agreed, then told me that the last guy who brought in a minor problem was left to languish in the waiting room a full 8 hours. I suppose I should have been relieved I was only in the waiting room for 5 hours. I felt even stranger there.
The nurse stuck the needle in my right arm, and instantaneously, the pain was strong enough to bring tears to my eyes. This was no simple blood draw. ‘I’ve hit a nerve,’ the nurse stated, which seemed like an understatement in my opinion. The nurse filled the entire vital with blood before ending the procedure. My child looked at me, and contrary to everything I had taught him since his first shot, the needle hurt and I cried.
What Happened Next?
I was given a prescription for antibiotics for the tract infection and went home. As I fell asleep that night I thought about salvaging the remaining two days of the event and how I’d get there.
Yet the next day, and next, passed. During those days, stuck at home instead of across the bay, with a growing flu feeling and increasing soreness in my arm, I tried to distract myself. Anything that made me laugh was good, and sitting in the warm Autumn sun were soothing. In the evenings, I worked slowly on a pastel drawing, feeling sore, but still ok. The antibiotics had started to take effect, and I felt less abdominal pain, still just tired. Yet, at night, the growing pain kept me up, and I’d cry, sometimes drops landed on my drawing. I created this drawing called Woman Rising
Prior to my hospital visit, I was implementing the next phase of a business plan for Flor de Miel Media that I had worked so hard on over a six month period and with guidance of Paul Terry and business management class at S.F.’s Renaissance Business Center. Part of my plan called for developing an online presence with separate websites for the media services offered by FMM. At the same time, one of the pillar elements of the plan, a professional video camera, was within reach after several years of participating in a savings program for small businesses. At the same time, a colleague referred me for the chance of a lifetime – to associate produce for a director, her work I greatly admired, welcoming a chance to work on a 10 part series, to support her work and learn in the process. It felt like a great moment at 43 years of age, even if my bank balance painted a picture significantly impacted by the economic wave than began cresting over me already back in October of 2007.
I created the Woman Rising posting on October 05, 2008. That is the last time I have drawn. Only recently did I try to hold a camera in my hand, and felt certain there was an umph missing that had been there before.
By October 07, 2008 I was in a free fall of leaps and bounds in pain at levels I never knew existed, childbirth was a scratch in contrast, even c-section was minor in comparison. And the pain did not stop there, it kept rising until I realized I was willing to have the extremity cut off rather than continue in such pain. That was the day I returned to the ER, still trusting that this was the place I’d be healed, and cared for on that Monday afternoon that turned into an evening ending towards late night, my child and I still without having eaten and needing to get to sleep for school the next day.
That visit to the ER though, we did not very long before they took me back into the ER, the excruciating pain entrance fee to a gurney in a hallway, where I was left to handle the pain for an hour or so. I explained to the attending doctor what had happened to me during the blood draw. I was told to wait for the neurologist, with hours passing and a Vicadin in between, before I was released with a scheduled follow-up neurology appointment after an initial diagnosis of neuropathy. What happened next, well, that is for another entry of Letter of Courage.
Who can Tell you what RSD Means?
I have been preliminarily diagnosed with RSD. What is RSD? Well, that depends on who is answering the question. For someone like me, its a chronic pain syndrome that is extremely complicated. Although increasing mobility and decreasing pain are experienced in my right arm at times, I think the pain in my upper body is simply silenced by the raging pain in my legs. I have had extreme difficulty walking, even with a cane. Making it around even a half block is now an excruciating task. RSD is life transforming. RSD is one pain in the ass. RSD is an invitation to let go of my body for awhile when the pain is so bad, perhaps practice for that final day of ascent. RSD is an opportunity to be a good example to my child of what one does when life hands off something unexpected – how to make lemonade out of lemons.
To the hospital where I was stuck in the arm, RSD is a tough case to be made against them, and there is enough power in those halls to ensure a case like mine is probably never made by any attorney who wants to do business or golf again. To the hospital, me as the patient now diagnosed by its very own doctors with RSD, I am the pain in the ass.
To the doctors who are so overwhelmed already by the extremely busy neurology departments, especially so prominent of one, having a case of RSD that spreads is complicated. I have no opinion as to what influence working for said hospital has on the doctors as they try to assess this very rare and very understudied disease.
To the therapists who I meet each week, either to develop strength where there is none, either in my muscles, in my pain tolerance level or the dealing with excruciating pain, they help me keep clear the light at the end of the tunnel so I have hope that I will get better. To those who work with me to bring back my body to a manageable place, RSD is merely a “bucket” diagnosis, until everything else is ruled out. That is, don’t get stuck in RSD. The weekly therapy sessions are the lights that show me back out of those most painful days, when I could sit down on the sidewalk for lack of energy to move another muscle, and tell my story whole to pass the time and not have to remember my body hurts in ways I didn’t know were possible.
For lawyers to whom I have been referred or sought out, RSD can be a goldmine but it must be the right goldmine to take the case. No doubt, sticky cases of spreading RSD, especially from such a routine procedure, is a pain in the ass.
I am told that having a blood draw is risky business. So it may be. In this case, or any other, why is it only the patient should incur this risk? Why must it be I? If it must be me, then where were the signs that informed me that indeed the average person to contract RSD is indeed a 42 year old woman? After having to move four times in four months as a result of the devastating poverty, I feel the risk should not be mine alone.
As the months pass and I continue to have extreme difficulty working, or sitting oreven walking, I feel certain that its not fair that I walked into a hospital healthy and come out injured. Even more, I feel certain it can not be just me who bears the brunt of this unfortunate circumstance.
What is RSD? Links.
RSD is a rate progressive chronic nerve disease – its an acronym for Reflex Sympathetic Dystrophy. Often today its know by CRPS – Complex Regional Pain Syndrome. I understand from reading more about this disease, that patients tend to prefer the RSD name as opposed to CRPS. Perhaps its that, at times, I can hardly think, and RSD seems to come easier to me that remembering those four letters which seem like a pile of letters unrelated to me.
RSD reflects the body’s unexplained excessive pain reaction to a procedure or injury to the body. Often, RSD goes for years without being properly diagnosed, and often results after an injury or surgery. However, there are cases of RSD developing from simple blood draws.
RSD was first recognized in soldiers of the Civil War, and despite the years passing, still little is known about why the body reacts this way, or what can be taken to cure the disease.
Women are several times more likely to contract RSD. The average age of patients that contract RSD is 42. Currently, doctors are now starting to recognize a pediatric RSD, also at a higher rate of incidence in girls. To learn more, please read here.
To learn more in general, please visit here to and to read more about RSD, its symptoms, and impact on the patient, family and community.
I know this is a long entry, perhaps I need the distraction more today – its a day of excruciating pain, muscle spasms in my legs and back, and burning arms. I am grateful tomorrow is another day.
Letter of Courage, Published Feb 03, 2009.
I have developed a separate section of my blog to share an experience that I hope will lead to greater dialogue and discussion about the health care system in our country, and about the nature of Reflex Sympathetic Dystrophy.
I was diagnosed with RSD in October, 2008 after a simple blood draw that went wrong, damaging the nerve in my right arm, and developing into RSD. In the last several months, the RSD has spread to my legs, causing extreme pain when walking, and in my legs in general.
This section of my blog is titled the Letter of Courage, named after a very difficult letter I had to write very shortly after my diagnosis. The Letter of Courage took almost a month to write. The prose was not difficult, but the news I had to convey was – I needed help.
A dear friend who had witnessed the drastic change in my life following the initial injury sat down with me one day to ask that I consider in earnest what I was going to do given that I had been unable to work for over a month. She and I considered the options, which were few given that I was completely unable to use my right arm, and particularly as the doctor predicted it could take anywhere from a few months to many years to be completely healed.
My friend asked me to face my reality, and have the courage to ask for help, to ask for donations to help make it through the several months it would take before I could obtain help through SSI, or hopefully, begin working again.
The Letter of Courage blog section is much more than a blog about RSD, or the health care system. At its core, the Letter of Courage is a place to consider how we view those who need help in our society, particularly those afflicted with chronic conditions, and how we consider, as individuals and as a society, what it means to ask for “help.”
Given that RSD has no known cure, nor any explanation for its cause, or why it affects women twice as much as men, I have had to reach into the healing capacity of my own body, and seek out those healers that I trust to help support the medical work and physical therapy that my doctor has prescribed.
As I have sought increasing emotional and spiritual balance even when faced with this illness and devastating resulting poverty, I have come to see my current experience as a lesson.
In the process of writing the Letter of Courage, I came to see that on some deep level, I had been having difficulty asking for and accepting help in my life. I believe that the lesson this illness is teaching me is to see that its ok to need others, and its ok to need help. It’s ok to not be perfect and have all the answers. It’s ok to accept love and support in my life.
The Letter of Change blog section came about as a forum in which to talk about the experience of being in the health care system as it exists currently. To achieve this goal, I will invite other readers and experts to join the conversation.
I am also inviting the friend who inspired the Letter of Courage, to join the discussion so we can learn tips and exercises that can be useful to all chronic pain sufferers, their caregivers and family members, and to learn about her experience with the health care system in Europe as one of many systems I hope to study on this journey.
Stay tuned for further discussions!