Quote:
Originally Posted by Adalaide
Yesterday was my appointment with a pain doctor to confirm my CRPS diagnosis. I went into it scared that he would say something else, but still hopeful that I would finally have my confirmation and validation after 5 years. This is what I wanted, a diagnosis, an answer. I believed it would be what I needed to move forward and nothing more. He didn't even bat an eyelash at my symptoms before saying it sounded like CRPS.
Instead, I was surprised to leave his office with so many mixed emotions it is hard to describe. I am happy to have a firm diagnosis finally after 5 years. I'm also scared and worried about my future because now I'm certain that this is my future. And I'm mad, mad as hell. For 5 years I went to doctor after doctor, sometimes literally begging and in tears in the office for them to help me because I just wanted the pain to stop. They wanted to give me drugs without a diagnosis, called me depressed, said it was anxiety or somatization. Mostly, they dismissed me. Once, I even saw a neurologist and asked him if it could be CRPS. After explaining to him what CRPS and RSD stand for (not a good sign) he told me that there was no way I could fit that profile and sent me on my way. That was nearly two years ago. He could have helped me, and instead he half listened and I spent that time looking for answers again.
I wouldn't have my answer now if I hadn't asked my new neurologist if it could be CRPS. She told me my symptoms could fit, but that this pain doctor she works with is who she sends all potential cases too for diagnosis because he'll see it so much more than her. I have a diagnosis because I spent 5 years fighting, begging, advocating. I don't know how I'm supposed to trust any doctor. On top of this issue, I slipped through the cracks with undiagnosed celiac for over 30 years and the bad neuro misdiagnosed me with a very serious issue I don't even have by not doing the sole test you can use to diagnose it with. I need them, and I need their help, but I don't know where to start to trust any of them to provide anything approaching appropriate care or advice.
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Wow...
The big moment. We all remember it. The most difficult and emotionally convoluted moment in most of our lives. You finally got the answer you were looking for. Now you know what you're up against, at least as far as the medical world defines it.
And how does the basic medical world define it? Reflex Sympathetic Dystrophy? Or Causalgia? Or Complex Regional Pain Syndrome I? Or Complex Regional Pain Syndrome II? Or Sudeck's Atrophy?
My point is, the medical field gave you an answer that they don't understand... Complex Regional Pain Syndrome? Really?! Just the name itself is friggin' MEAN. (Can I say friggin' Che-Mar??
) Explaining to people that the reason your life is a living hell is because of something called "Complex Regional Pain Syndrome" is just fuel on the fire that other people already don't understand. It's why you "don't know where to start to trust any of them to provide anything approaching appropriate care or advice."
Mixed emotions because you feel validated that you knew all along instinctually, and no one would listen. Happy for a sort of closure, a sort of reason, to validate the past 5 years, but deeply afraid of what that reason means for the future. Determined to get a definition of what you've been dealing with... and now you have. And now you're mad as hell. Made me mad as hell too.
What if you used this same determination for an answer to create a NEW answer? What if...
What if you could channel your anger into pure positive determination? What if the anger and the sadness and the FEAR went away and you were left only with the healing process, and you got to watch as the pain slips away back into the nothingness it came from. And the real you emerges all over again - what a beautiful process it is.
Adalaide - I am a little bit nuts. I am sorry if this is an inappropriate response in any way.
I just want to see every last person who's ever had to deal with the hell that is RSD to live in the joy that is rightfully theirs, and I want that to happen NOW
Keep your head up Adalaide.