Monday, October 20, 2014

I am a normal person

For the past few years, I have been a co-admin of a Facebook support group.  I have this blog and I have written a book:  CRPS/RSD Facts, Fiction and Feelings.  I try to be accessible to the members of my support group but some how that doesn't come across.  I find it very frustrating that I am viewed as inaccessible.

I can't get used to people knowing who I am when I have never met them.  Two weeks ago, I was sitting with a friend who was getting ketamine at Florida Spine Institute in Clearwater FL.  Crissy, one of their fantastic nurses, asked if I knew "Mary".  I said that I did not.  Crissy wanted to know if I would talk to her.  Of course I said yes.  Crissy checked with "Mary' to be sure that she was okay with it.  "Mary" shouted out "I have her book!".  We spoke for a while, I gave her a hug and went back to my friend.  "Mary" started calling friends/family to tell them that she met me and I gave her a hug.  I appreciate that she purchased my book as all royalties go to my non-profit CRPS Partners In Pain, Inc.  It felt weird to me that someone would be excited to meet me.

I am just a normal person with CRPS who wants to use my nursing education to help others with this monster disease.  CRPS Partners In Pain, Inc is my baby.  The founding mothers saw a need to help those not getting treatment because of financial issues needed treatments.  There are non-profits that promote CRPS Awareness (I whole heartedly support them) and non-profits supporting research.  There was no one helping the educated getting the treatment that research has found helpful.  This is why we started CRPS PIP.

I don't see anything special about what I am doing.  I don't think of myself as inaccessible yet that seems to be the perception of others.

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