Hello everyone,
It has been a long time since I first created this site, and you may have noticed the lack of posts since then. When I first started this, I was very determined to create a place where people could feel at ease and discuss their experiences with RSD in a judgment and pity free environment. To that end, I wanted to be able to at least start with some lighter stories and elements that didn't immediately fall into a category of "this is my tragedy."
I think, however, that though I meant well, I was much mistaken in my desire to not post the troubled posts from the get go. People struggling with RSD often have a lot of pent up frustration - at themselves, at the situation, at the lack of understanding- and as such it can be extremely difficult to get to the lighter side of the issue without first venting about the darker side of living with this disorder. It can also help to build trust and allow our followers to feel more comfortable with each other (a necessary step to sharing that lighter, supportive, camaraderie I was so hoping to provide) if folks can first get an understanding reaction to the barebones telling of their stories.
So, to that end, I have decided to make it a policy to post whatever stories I receive (within reason, of course) which I will do retroactively. Please feel free to spread the word, and by all means please feel free to contact me with any questions or concerns!
With Love,
Kate
Monday, July 18, 2011
Thursday, October 25, 2007
What this is all about
Greetings, all, and welcome to Nervous Thoughts, where I intend to create a safe, supportive on-line environment for folks whose lives have been effected by Reflex Sympathetic Dystrophy (RSD).
I was diagnosed with RSD, localized in my left ankle, as a young teen, after spending several years being bounced from one doctor to another with no satisfactory answers, and mounting pain and frustration. My RSD had progressed to the end of stage II by the time I enrolled in the study conducted at the Boston Children's hospital, but was thankfully mostly reversed.
I was inspired to create this space earlier this year, after a sudden (and very unexpected!) flare up I had while in labor with my first child. I had not thought about the frustrations of dealing with RSD in a long while, but the bewilderment of the nurses on duty brought on a flood of memories.
Thinking back on the many events I experienced in relation to RSD as a teen, from the angering remembrance of being told by a doctor that I should win an academy award for my performance in faking the pain, to the dumfounding realization that I once asked another doctor to amputate my foot in hopes of escaping the pain (he thankfully declined), I came to the conclusion that it would have been far less trying to go through if I had been able to exchange stories with others who were going through the same thing; at least, perhaps, I wouldn't have felt like such a freak.
A traditional support group for RSD is not really adequate as a means of reaching out, since many of those afflicted have a hard time getting around. Therefore, I wanted to create an online community where folks could find kindred spirits without needing to leave the house.
Back when I was in the thick of my own RSD struggles, there were very few resources at all--let alone on-line resources--available to the average joe, and what few there were seemed to me to be self-pitying and somewhat un-intelligent, and seemed to send the message that everyone with RSD lived and breathed nothing but angst and injustice. Also, There were times when I'd want to tell a story about something weird my foot did, or vent about how angry i was with my body, but found that I had to censor myself or else bring on a barage of (usually well meant) pity and sympathy that left me feeling like half a person. So, my goal here is to provide a space for people to share stories without the stigma that this affliction defines who you are or even how you live your life. To be able to talk about it all, from the dutifully macabre, to those things that are really funny if you live with what you live with, to the facts and newest findings, without worrying about the drama such stories could create in other circles of friends.
It will likely take a while for this to really get going, but what I'd like to do is to post a new story here each day (depending on volume, perhaps just once a week at first, and perhaps even more in the future). and anyone who'd like to can comment and join in. If you'd like to share a story (or a dozen!), please send it, along with anything else you'd like posted, to: RSDstory@gmail.com . I intend this to be open to anyone, whether you are dealing with it currently, have dealt with it in the past, are close to someone with it or have just had a single encounter...all are welcome.
Happy Posting!
With Love,
Kate
RSDstory@gmail.com
I was diagnosed with RSD, localized in my left ankle, as a young teen, after spending several years being bounced from one doctor to another with no satisfactory answers, and mounting pain and frustration. My RSD had progressed to the end of stage II by the time I enrolled in the study conducted at the Boston Children's hospital, but was thankfully mostly reversed.
I was inspired to create this space earlier this year, after a sudden (and very unexpected!) flare up I had while in labor with my first child. I had not thought about the frustrations of dealing with RSD in a long while, but the bewilderment of the nurses on duty brought on a flood of memories.
Thinking back on the many events I experienced in relation to RSD as a teen, from the angering remembrance of being told by a doctor that I should win an academy award for my performance in faking the pain, to the dumfounding realization that I once asked another doctor to amputate my foot in hopes of escaping the pain (he thankfully declined), I came to the conclusion that it would have been far less trying to go through if I had been able to exchange stories with others who were going through the same thing; at least, perhaps, I wouldn't have felt like such a freak.
A traditional support group for RSD is not really adequate as a means of reaching out, since many of those afflicted have a hard time getting around. Therefore, I wanted to create an online community where folks could find kindred spirits without needing to leave the house.
Back when I was in the thick of my own RSD struggles, there were very few resources at all--let alone on-line resources--available to the average joe, and what few there were seemed to me to be self-pitying and somewhat un-intelligent, and seemed to send the message that everyone with RSD lived and breathed nothing but angst and injustice. Also, There were times when I'd want to tell a story about something weird my foot did, or vent about how angry i was with my body, but found that I had to censor myself or else bring on a barage of (usually well meant) pity and sympathy that left me feeling like half a person. So, my goal here is to provide a space for people to share stories without the stigma that this affliction defines who you are or even how you live your life. To be able to talk about it all, from the dutifully macabre, to those things that are really funny if you live with what you live with, to the facts and newest findings, without worrying about the drama such stories could create in other circles of friends.
It will likely take a while for this to really get going, but what I'd like to do is to post a new story here each day (depending on volume, perhaps just once a week at first, and perhaps even more in the future). and anyone who'd like to can comment and join in. If you'd like to share a story (or a dozen!), please send it, along with anything else you'd like posted, to: RSDstory@gmail.com . I intend this to be open to anyone, whether you are dealing with it currently, have dealt with it in the past, are close to someone with it or have just had a single encounter...all are welcome.
Happy Posting!
With Love,
Kate
RSDstory@gmail.com
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