Letter of Courage – Entry #2 – What is RSD? How did I get it?

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.

What Happened?
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.

2 thoughts on “Letter of Courage – Entry #2 – What is RSD? How did I get it?

  1. Oh how I feel for you!! RSD is something that is so easy to come in ones life, but so difficult to explain, difficult to understand, and so difficult to cope with on a daily basis. But there is hope, there is life despite the horrible pain!!

    My RSD started in my left ankle in 2003 and has now excelled to my entire body. But last year (2008) it got lonely and needed some friends, so it invited Fibromyalgia, Osteoporosis, and MS to come live with us and play with RSD. At that time I so could have given up and stayed in my lonely world of depression, low self-esteem, and horrible pain. And I would have been completely happy to do just that, had it not been for my desire to continue to live my life to the fullest possible. So when I turned that negative attitude into a positive one, I began to learn so very much about myself and now look at all my interior playmates as gifts!! The most positive thing I did was research RSD, study Life Coaching techniques, and then I became the first known RSD Coach™ and I get to help other RSDer’s on how they too can live their life to the fullest and see the positive from each and every day.

    Anyway, enough about me. =)
    I just wanted to let you know that I empathize with you and appreciate you sharing your experience and RSD story with all of us. Thank You!

    Much Love & Respect,
    Coach Marla

    Like

  2. Hi Marla,

    Thank you for replying! Your site was one of the first I saw when I began researching RSD. I was diagnosed in October 2008. My doctors cautioned me not to research too much in the beginning as we all hoped my case would be one in which the RSD disappeared quickly. They didn’t want me to be scared, and I didn’t want to be scared, so I did not research it too much. Your site was the inspiration I needed to keep positive, thank you! I thought, ok, if I have RSD, I can live with it and still have a life. I am pretty sure I returned to your site on sleepless nights when the pain scared me by its strength, and by its unrelenting nature.

    By December, when I first began experiencing difficulty walking, I had to research more about RSD, to educate myself and try to figure out what was wrong with me. Given that we all wanted the RSD to disappear completely through waiting it out, I wasn’t scheduled for a follow-up neurological visit for two and a half months. I had to educate myself and see if there was anything I could do. Some nights, the notion of not walking kept me up late at night, in fear and panic. Some nights I was filled with self-pity and anger. One day when I was most scared, a dear friend reached out to talk with me. My friend Jene McCovey is a poet, we met during a commercial film job I had, a PSA for assisted living technology that can enhance a disabled person’s life, made for a Native American audience.

    I was moved by Jene’s spirit when I met her, and by her poetry when I heard her perform. Jene has been in a wheelchair for many years, and wanted me to know that I had someone I could talk with if I needed. I felt blessed. I could see a positive role model, and know once again that life does go on – so on with it!

    I have been very fortunate to feel mainly positive on the whole. I limit my pity parties to five minutes if I need it, and sharing is an outlet for seeing my life in a new context. My spiritual life is such that I know this experience is just a journey, another pathway to reaching deeper understanding of life’s meaning. Just the other day, despite being unable to move my legs very quickly, I looked up at the mountain that stands behind my house as I trudged on, moving what felt like weights called legs, and yet, in my mind, I saw myself walking again, and I know I will. I could see myself dancing again. From what I am learning about the pathways in the brain, and how I need to help along the visualization of my limbs healed, I appreciate all the support that helps keep that dream alive.

    What I found is being positive is the only choice.

    At the same time, I have been walking a fine line with also needing to acknowledge what has happened so I can get the medical support I need.

    What you share in your post and website is learning how to live with both of those notions: being positive and acknowledging I have RSD. Since my doctor has been thrown by the fact that it has traveled so quickly through the rest of my body and impacted my walking whereas the initial injury was in my arm, she has been playing the waiting game, running more tests, hoping with time it will go away. I am in diagnosis limbo. This allows me to continue to believe that I may not have RSD, and I pray its something else that can be cured easily.

    I admire your strength.

    Thank you for writing and sharing.

    Like

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