I'm disappointed with the RSD community. A few people patted me on the back for taking action and writing to senators. But when I asked my fellow sufferers what they would want to make a difference, a change in their lives as people with RSD, not one person spoke. The crickets chirpped.
I know everyone wants a cure. I would love to get rid of this burning pain, stop taking the meds, and move on to living a full pain free life where I am not dependent on those that love me.
But that is not my reality. And it saddens me that no one feels strongly enough to voice the same.
What is the point of trying to help people that don't want to be helped?
RSD has robbed me of freedoms I didn't even know I had. I have to spend a majority of my time sitting in a recliner. The majority of my savings goes to medical bills. I can't write or paint anymore. I have trouble picking up my son. And if the emotional pain were not enough, I have to live with the fact that I am probably going to get worse, and every time I see a new doctor, I have to try and convince him that this is a real condition.
It saddens me that no one has their own story that makes them feel as mad or upset to want to change what has happen to their life.
Update- I have been working with the RSD community, and I should apologize for this post. This was a combination of all of my frustrations- pain, doctors, and at the time, a lack of overall support, not just from the RSD community. Now we are all working together, and hopefully will get some things done. Baby steps are a start.
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