Quote:
Originally Posted by SandyRI
You guys are my inspiration. My injury was almost 3 yrs ago, but my first diagnosis was just 15 mths ago, and I left my job for a LOA just 3 mths ago. I'm a newbie at this. I often turn to you all for support and advice. Thanks for always being here. I don't know if I will ever adjust, I still intend in my mind to get better.
I go to NYC this Friday for a ketamine evaluation. I have no idea what I will do if I can't get it because the doctor doesn't believe I have RSD (I only have about a 50% success rate with that), or if it doesn't work. I don't have a Plan B. I finally stopped crying about a month ago. But I don't think the sadness will ever completely go away. I also sent an application to Dr. Getson in Marlton NJ, but it has been more than a few weeks and he has not responded. Bummer. My evaluation with Dr. S is in June 2010.
My therapist asked me last week if I ever get mad about my fate instead of sad. The answer is not really. I don't know why I'm not mad about it. The only time I've ever felt angry is when the WC insurance company interferes with my care.
I agree with Keep Smilin - I am profoundly relieved that I am the one in my family that have RSD. I wouldn't be able to stand it if it was my husband or one of my kids that was suffering like this. I'd much rather it be me.
I am scared to death of the upcoming winter. Just wanted to share that with you all. Has anyone else said that yet? Last year was my first winter with RSD. If the cold wind blew on my head I would wake up vomiting with head pain in the morning. Does anyone else have RSD in their upper back, cervical spine or the occipital area of their head? My RSD spread up from my shoulder (location of original injury), instead of down to my hand (or extremity), which is what most docs are accustomed to seeing. I feel like a freak because my RSD is so very unusual. And most docs haven't seen my kind of RSD before and don't know what to make of it. They want to see a swollen, discolored extremity in order to make a diagnosis - hence, my dismal 50% diagnosis rate.
Thanks for a great thread, MsL. I think many of us appreciate talking about the psychological aspects of RSD because of the monumental toll it has taken on our lives. No one else can quite appreciate how things have changed for us - it really is devastating. Not just because we are in so much pain, but because our livelihoods and sense of purpose have been taken away also. I never expected to "retire" at the age of 48.
XOXOX Sandy
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Sandy...
I too have a lot of the same problems you have with have the doctors saying you don't have RSD and then many others saying I do. I actually saw Dr. Getson about 2 weeks ago. I had a Thermogram done. Have you had one of those? I was amazed at how clear cut the results were and feel now that any Dr. that says I do not have RSD is a quack. Dr. Getson, told me that my RSD in my leg is more than obvious...which I and many other doctors have seen...but many put in their reports that my leg has no evidence of RSD. Now I feel validated. I knew what was wrong with me...but I have a physical test I can walk in an office with in my hand and say..."here is my thermogram I have RSD what are we going to do about it." I was taken back a little when he told me that what I thought was a pinched nerve in my neck from the accident that flared my leg again is not a pinched nerve but new RSD...not only was I a little surprised, but very surpised that the Thermogram his office does is so intricate that he could tell that.
He was so nice and kind, I said I will probably be back to him in the future for ketamine infusion therapy, but for now to stay the course in my treatment, and possibly consider a SCS...he was right in line with my other doctors, that I have who I finally feel comfortable with. Let me know if you need any names or any help. Keep your head up!