Tuesday, December 31, 2013


I thought that my last post would be my final post for 2013 but circumstances have changed.

Over the weekend we lost to suicide someone who was very active in the CRPS community.  This was the fifth person this year to take their life due to CRPS.  I connect with about 500 people and there are 5 suicides that I know about.  Who knows how many more we have lost this year alone.

I want to so something to get the word out that CRPS is known as the Suicide Disease.  I have shared my story with my readers about my dark days.  I feel the need to do more.  I would like to see Dr Phil do a show on CRPS and Suicide.  This is right up his ally as his show deals with psychological issues.  It would be great if the audience could all be those of us with CRPS.  Please join me in a writing campaign to Dr Phil.


In honor of those with CRPS who took their life, let's all post this as our status. We all need to write into Dr Phil and ask him to do a show on CRPS and suicide. To those who have lost a loved one to suicide; please share your story as a survivor. To those of us who have attempted suicide in the past, please share your story. To those now thinking about suicide, please call a suicide hot line:1-800-273-8255
National Suicide Prevention Lifeline
and then write your feelings to Dr Phil. Dr Phil is the only show that deals only with psychologic issues. Perhaps we could get Dr Pradeep Chopra to write in and to be the expert that advises Dr Phil. If I personally know of five people who in 2013 have CRPS who committed suicide; then how many were there that we didn't hear about.

Wishing you all a low pain Happy New Year!!!

Nancy Renée

Sunday, December 15, 2013

2013 in review and planning for 2014

2013 has been a crazy year for me.  Obstacles kept popping up.  Hopefully most of these obstacles have been resolved (child care, health issues in DC).  In 2014, I plan to continue to be very involved in Ian's life.  This means travel.  I have been a Guardian ad Litem for two years and have had two cases.  Both were adopted in 2013.  I feel that it would not be fair to a child in foster care or their family to take on a new case.  I started being a Guardian ad Litem to make a difference in the lives of children in foster care.  I still feel that they need an advocate but I have too much on my plate right now to be able to give the time needed to take on another case.

Ketamine Klub: I meet so many people through this Facebook group.  We have close to 600 members; many of whom have been a part of the group for a long time and are able to help new members.  I also have great co-admins who can fill in.  More than two years ago Sandy and I took over as admins of K Klub and have seen new members blossom and become advocates for others.  This is too important to me for me to give it up.

Loved Ones Group:  I hoped from the beginning that one of the members would step up and take it over just like with Teens to Thirty.  A group of members rose to the occasion and I was able to slowly to ween myself out of the group.  There are other parents' groups through TCAPP; so if I need to dissolve the group, these parents will have somewhere else to go.

CRPS PIP:  This is my baby.  There is so much more that I want to do with our non-profit.  I need to devote more of my time on fundraising and helping people who wouldn't otherwise get treatment.  The symposium was a wonderful experience.  It was very time consuming but the end result was great.  There are two long term projects that I would like to see us work towards.  A mentor program and a house where those with CRPS who are single or living with elderly parents can live together like a co-op.  These are long term goals and will take time and effort.

I want to write a book on Pediatric Pain.  I was a peds nurse for 10 years.  We had chronic patients but they were not chronic pain patients.  I will need to do some research in order to write this book.  At this point I haven't even come up with a title.  Even when I am in DC, I'll have my evenings to research and write.  This is the easiest to fit into a time frame because I only need the Inter net and my computer to work on it.

I would like to set up a FL support group where we can meet in person in different areas around central FL.  I will need a partner in developing this as I can't take on too much as again I will be traveling.

I have learned a lot in 2013.  I very rarely feel overwhelmed but for a good part of 2013 that is how I felt.  That is not good for my health or for the projects that I am working on.  I want to continue to make regular visits to DC to spend time with Kim, Bennett and Ian but there should not be any emergency child care issues and hopefully no emergency health issues.  Knowing in advance when I will be away and when I will be home should help me to organize my time better.

To my followers:  Merry Christmas and wishes for a low pain healthy 2014.  Thank you for your support.


Wednesday, December 4, 2013


The holidays are upon us.  To me, Christmas it a time of love, hope and peace.  I would love to see this happen in the Chronic Pain Community.  There are several great organizations helping those with Chronic Pain (not just CRPS).  I would love to see us work in harmony and share our expertise.  Alas, I guess that I am too much of an idealist as in the real world, this just hasn't been possible.  It is a shame.