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.


October, November and December hold a lot of memories from 2001.  It was October 26th 2001 that I was put into a Ketamine Coma in Germany.  At the time, we thought that this would cure CRPS.  That was not the case.  As of this post, ketamine coma is not available anywhere.

As a RN, I knew what the risks were of any drug induced coma:  respiratory illness, infection, blood clots, etc.  If I were presented with the opportunity to get ketamine coma treatment now; with the ketamine options available now that were not available then, I would not take the risk.  We now know that ketamine is needed on an ongoing basis and that it is not a cure.

I arrived back in the US on Veteran's Day.  My father, who was dying of ALS, went into a nursing home for two weeks, so that my mom could accompany me to Germany.  The entire time that I was awake, I was concerned that we would get a call telling us that he was gone.  It did not happen.  November 26 2001, my father passed thinking that my CRPS was cured.

December 14 was my father's birthday.  All special events are difficult once you loose someone.  This was particularly difficult as his birthday was just after his death.