November was RSD awareness month, and in the weeks following, I have seen many wonderful articles that are bringing awareness to so many. This efforts are very much appreciated by me. In these stories, I see my experience with the doctors and insurance, and approach from the medical field to RSD is not just my own unique experience, but of many people. In this, I have drawn immeasurable comfort.
The pain and fear that come with RSD are quite a lot to suddenly have thrust upon one. I realize, now 2 years in, that I have been in shock. Pure and simple. RSD brings on a huge shift in the lives of those who are diagnosed.
When I started this blog, I thought I’d be able to write consistently, since there is a portion of my life that involves RSD now, where before I knew nothing. I imagined this blog to be a place to share my journey, and hopefully, my healing.
In the last several months though, I have had to face once again my lack of medical care access, and the constant judgments and challenges within a hospital system that, given that I was injured there two years ago, is not very concerned about my care. I have been told I am a ‘problem patient.’ I have been officially ‘barred’ now from pain management – a department that only saw me once, and during which I was asked whether I had filed a lawsuit. Not a referral from neurology nor my general physician, not begging and crying, have ever opened pain management again.
When pain management refused me again as a patient this summerl, I demanded to know why. That’s when I was told. Not only have I been barred from pain management but neurology too. I believe my indignation when the pain specialist asked me whether I had filed a lawsuit, and the anger as I expressed after experiencing repeated “weird” appointment cancellations, or lost records, or sometimes, straight up hostility, and in failing to receive treatment for RSD. I believe as a whole, these experiences add up to my characterization as a ‘problem.’
I have been fortunate to be in good health. I am still am, overall, in good health. My medical ‘problems’ started when I was diagnosed in October of 2008 after a botched blood draw hit a nerve in my right arm, I was diagnosed within 3 weeks because the signs and symptoms were so acute. Within weeks, the symptoms traveled to my right leg and I became disabled within two months. Delays due to the insurance, three months later, the same neurologist who diagnosed my arm told me RSD couldn’t travel to my leg, and refused to hear any of the research that says that is not true. Distrust set in, and off we went for two years worth of tests, and delays, while descriptions about my symptoms went ignored. By this point, skin changes, legions and other symptoms were already present.Every time I tried to share research or information the with doctor, I was termed a ‘problem who wanted RSD.’ Oh yeah, cuz this is so beautiful!
This summer, when pain management rejected the referral again, they told my general physical they had ‘found’ a prescription from that prior appointment the year before, and said I was to take those medications first. After a year without seeing me? After asking me about a lawsuit?
That was pretty much the end for me. After two years, after returning again and again, even, begging to please help me the pain was so bad, pain management at this top flight hospital would not see me. The pain in that experience is beyond words, yet, its transformative, and speaking out about the horrendous way patients with RSD are diagnosed, treated and managed, is something I will do. I believe its shameful that the debate about RSD and its treatment within the medical community is a travesty played out on patients who themselves have no role in making a diagnosis, but, once one is diagnosed, suddenly, a whole theoretical, and frankly bizarre, medical debate comes crashing down on top of people already experiencing a physical change that frankly that could make anyone go mad.
I have made the choice to seek something better for myself. This blog is a documentation of this journey to discover.
I have invited my father along with me. For many reasons.
I respect my father for the accomplishments and contributions he’s made in his work over a lifetime. He’s a doctor, or was. Like many, the medical field was changing, and his calling lead to transforming communities by the numbers – economically. He knew if people can’t feed themselves, they can’t go anywhere. He has created urban community farm models that train youth, foster knowledge exchange on farming and food security between generations, while building community in the process.
I asked my dad along this road with me too because he is a skeptic. Has been since the injury and symptoms started. It has been painful too to face his doubt. Unlike my doctor, family is hard to leave behind. So, I thought exploring RSD together, seeking out answers and turning our debates into inquiries, could not only be healing for us, but, for others faced with RSD, or any type of challenging health situation.
I do not have health insurance except for one provided through a city program for low-income people. The insurance has fought back just as hard as the hospital, and like them, their resources and ability to draw out the fight is substantial. Oh, and did I mention I live daily with the symptoms? When I was first injured, over these last two years, I have woken up many mornings crying to think how cruel this whole experience can be. I have gone through the range of emotions, but, in the end, I come back out for hope because I am alive. I am not alone. So many people living with RSD point and help show the way, and I am truly grateful.
If I can offer any New Year 2011 insights, from my limited experience, it’s this:
1) Start every day and, in between, and in the evenings, end with this meditation: “I am the doctor.”
I found that when I could focus myself back on what I could do myself, I felt more empowered, less angry, and able to minimize pain.
2) I have as much of a chance of healing myself as the doctors do.
There is no cure for RSD. Its so little understood. Why can’t patients, instead of being feared and isolated, be a source of great learning for the medical community, and be of support, rather than a thorn for doctors? Instead of this shameful debate within the medical community about whether RSD even exists, let’s get on with it now, and start learning together. We need a cure as much as doctors want to not hear us talk about our condition.
I came to use whistling as a means of distracting myself from the sharp, out of this world type of pain that comes with RSD. It was also a way for me to turn the pain into something else – as I focused myself on the whistling and trying to share my emotions through whistle, I started creating songs. Whistling also was a way for me to share with family members that I was being shaken by a tremor without having to speak about it all the time. If you were just recently diagnosed, I know, its really important to speak about what you are experiencing because so many people who are supposed to support healing instead carry out this debate within the medical community on patients directly by denying RSD exists or being poorly informed about the constant new research.
4) Please, please, whatever you do, do not believe you will be only that pain forever. The trauma takes time to work through. Take the time, ask for understanding, search if you have to, for others who are going through the same thing. I believe the trauma caused by the medical community in dealing with RSD patients can be extremely damaging emotionally, and, its important to guard your emotional equilibrium. Extreme pain levels are enough of a spiritual and emotional, if not physical, challenge. As one of my greatest supporters said recently, the change that comes from RSD rocks people’s worlds. Not just those with RSD, but those who love them. Give them time too. As someone else said, this is a rare condition, so it is harder for people to believe, and no one wants their loved one to suffer. Not you of them, or them of you. RSD will be a great teacher to you both. I have seen those around me thrive from the adversity too, so have faith.
In 2011, I hope to be a more consistent support to others going through an experience with RSD, by sharing my search for information and answers about RSD, to better understand the condition itself, and, the challenges RSD patients face. I hope to be a support to those who may, for whatever reason, find themselves without the medical access and care they need, regardless of the disease.
I am excited about all the alternative pain techniques; just pick one or two for right now, those most easiest to grab on to if you’re just at the start of the road, a whistle or a mediation. It will be easier to add more techniques as time goes on. Give thanks for any healing done, even the small positive changes, hold on to them as reminders, things will get better. I want to give thanks to those people who helped us when I was completely unable to work, and we lost our home, for all those who have shared their time energy, and resources. I want to thank people who share their RSD journeys for people like me, just barely down this road. Most of all, I want to thank my son who has proven to be one of the most amazing beings on this earth, and, many thanks to my Dad, for walking the road with me to discover what this RSD stuff is all about.
Here’s to 2011 being the year that the Medical Community and RSD Patients come together to find a cure for RSD!
Happy New Year! December 31, 2010 California.
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