Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 02-13-2010, 05:37 AM #11
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fmichael fmichael is offline
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fmichael fmichael is offline
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Join Date: Sep 2006
Location: California
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Dear Kathy -

I keep feeling the need to try and connect with you. I guess I was again struck in your last post when you noted that "RSD is not our friend..but it has met its match.."

Please be careful. It's been my experience after living with this for nine years now that the more we struggle "against" RSD, the greater our sense is that life has become unsatisfactory. Which may be the case, seems to be especially so if we express our satisfaction relative to meeting certain pre-set goals and expectations. I know some wonderful women who have withstood the greatest possible challenges of motherhood while fully afflicted with CRPS. It's my sense they have done so by modifying in some subtle sense the definition of what it meant to be a success as a parent, while not losing touch with its essence: maintaining a compassionate relationshio with one's child, through which the child will grow and mature. (Never easy for me in the case of my youngest son, now 12, who has no memory of me being healthy and doing a lot of the expected things with him, and which will bring him to tears in a second if focussed upon.)

But the key IMHO is not to wear ourselves out swimming against the tide. You let the rip tide take you where it's going, and swim into shore where you have the chance, not necessarily where you planned.

I was reminded of this over the last week in two related contexts. Firsts I was discouraged when a doctor changed my psychiatric diagnosis to "personality change secondary to general medical condition" (DSM IV 310.10) until a very wise psychologist who's currently repeating some neuro-psych testing on me in response to increasing complaints of loss of attentional skillls - which were never good - pointed out that I wasn't being told that I had acquired a personality disorder, only that my deep patterns of dealing with the world had changed. Then, case in point, I got my revised WISC III scores back (using the older test for better comparison with old data) and while the spread between my verbal and non-verbal IQ has increased to an almost unheard of 45 points (6 points is considered by some to be probative of ADHD, and 12 points typically conclusive, but 45???)* the thing was, although my non-verbal scores had decreased - as expected - my total verbal score was the highest it had ever been, with the most substantial increase in my ability to spot abstract similarities.

The point being, if we are determined that we are going to beat this thing, then we might as well stop trying to learn anything from it. In the words of Ram Dass, we "take the curriculum."

Of course, that doesn't mean that we shouldn't take advantage of opportunities when they come along, such as the chance that we may soon bave access to potentiated analgesics, with more effectiveness in controlling pain and less opportunity for developing either tollerences or GI/respiratory side effects. Which would be - in my own book of prejudged outcomes - not a bad thing at that.

Peace.

Mike

*This, by the way, is the reason I could never be a doctor.
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