I hurt today. The weather is changing and my knee is hurting. Just now, I caught myself sitting at my desk with my leg crossed over the hurt leg. I say hurt… I hurt it back on Feb 9, 2012. Since then, I’ve had exploratory surgery; MRIs; tests; therapies; medications; and the specialists can find nothing wrong from which the diagnosis Chronic/Complex Regional Pain Syndrome (CRPS) previously known as RSD is an appropriate diagnosis for the symptoms. I realize you do not understand my disease, the pain I am experiencing or how simply making a few changes to my diet along with non-toxic cleaning and care products improved my overall pain you’ve or another doctor been fighting for years.
As I sit here I do so with an invisible illness where the pain I am experiencing sitting with my legs crossed over one another hurts nowhere near what I have experienced before as a daily level of pain, I am trying to figure out what I should and shouldn’t say to you to get you to understand what I am living through with out you thinking I am a pill seeker. I am talking pain that causes me to vomit because you can only be unconscious from the pain for so long, and no the antiemesis medication you gave me that smells like a solvent when I open the bottle… No, it doesn’t help… I have lived with this intense pain for-days-on-end and to change my positioning to another position that is no more or less uncomfortable than the chairs in your office, is only natural. I just want a little relief.
Try to understand the greatest improvement for me came from stopping all the medications but one the doctors have had me on and implementing lifestyle changes and to be honest this sounds crazy to me but the proof is in the pudding. I am asking you to, please, stop judging and simply listen to me, to wait until I’ve finished speaking and take your time to think about what I just said before you reply. I am sure you are aware that I am already judged by the rest of the world because I do not look sick, nothing is obviously broken. Moreover, I’m judging me. Isn’t that enough for now? You must realize I sit here in fear of the words you may write in my file should I challenge you. What is even more frightening is that you won’t allow me access to my information because though it is mine and I should have access to it, I don’t because you own the paper it is printed upon of course I could purchase my records from you because the $290 office visit won’t cover the cost.
What’s worse no one has thought to tell me I am grieving the loss of me and what could have been. I could have been working on this and helping myself through it rather than kicking myself for feeling as I do over it. Doctor, I need empathy from you, along with information about my disease and above all else honesty. Not your judgment or your opinion, I’ve hired you to provide me, my care-team leader, with the data with which to make an informed decision on what to do next. I realize some people come to you and would rather you just told them what to do… I am not them.
Your Patient Pain