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Old 09-22-2009, 08:20 PM
SandyRI SandyRI is offline
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Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
SandyRI SandyRI is offline
Senior Member
 
Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
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Quote:
Originally Posted by keep smilin View Post
We are all on the same page.. the feeling of dispair and helplessness and hopelessness... times 50 some days..other days I feel I can move mountains and smile while doing it...We are all living with a very scarey, unpredictable illness.. I was told once that I have it for the good of others..to set an example.. for the good of others... I am okay with that except sometimes I am overwhelmed with saddness but then those are the times I search for a positive and thank god it is me suffering as I would never want to see anyone I love .. my family or friends go thru this.. anyone...ever! This was a wonderful topic.. well written!!

Plz.. keep smilin..
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

Last edited by SandyRI; 09-23-2009 at 09:26 AM. Reason: Editorial correction
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AintSoBad (09-23-2009), allentgamer (09-23-2009), hope4thebest (09-22-2009), loretta (09-25-2009), Mslday (09-22-2009), Sandel (09-26-2009)