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.