Tuesday, January 7, 2014

LOSS IN THE CRPS COMMUNITY

Yesterday I learned of yet another loss of life within the CRPS community.  Some of the six people who died in the past 12 months were straight up labeled suicide. The others, no other cause of death was given.  I am struggling to think what could we as a community done to prevent this loss of life.  I interact with about 600 people with CRPS.  To loose 6 of them is devastating. I am at a loss as to what to do.

There needs to be some way that these people can reach out to another with CRPS.  Yes their are suicide hot lines; but if you don't have CRPS you have no clue what it is like day to day.  We publish suicide hot line numbers everywhere.  How do we help these CRPSers know that they are loved, that there is hope and they are not alone?

I am open to any suggestions.  I am thinking that before I write my pediatric book, I need to write something for both caregivers and people with CRPS about suicide...more that what is in book 1.

Monday, January 6, 2014

A New Year and New Goals

As we begin the first full week of 2014, I have set some goals for this new years.  Here are my hopes for 2014

First and foremost, I need to stay healthy.  If I am not healthy, I can't help anyone.

2.  Spend time with my grandson Ian!

3.  Raise money for CRPS Partners In Pain, Inc.  Our first quarter goal is to raise $8,500.  This will permit us to provide ketamine treatments to one person for one full year.  That includes the loading dose (5 days at $500/day) at $2,500  and boosters every other month at $6,000. In 2013, we were able to help one person pay their COBRA Health Insurance so that they could continue to have treatment for their CRPS.  We funded 2 people's ketamine treatment, boosters for 2 people and medications that were not covered by insurance for another.  In order for us to help more people in 2014, I need everyone that I know to donate just $10 and share our donation requests with their friends.  Donations  can be made by going to www.crpspartnersinpain.com and click on donate.

4.  Write a book on Pediatric Pain for children and their families.

5. Continue as a co-admin of Ketamine Klub

6.  I so much want to find a place where those with CRPS who either live alone or with elderly parents can pull their resources and live together.  Most are on fixed incomes that barely cover the basics.  If you took 5 people and their incomes the standard of living would improve for all.  They would be able to support each other emotionally, help with treatments and know that they are not alone in this battle.  The problem is finding an organization willing to donate a house in a warm climate and near a reputable CRPS doctor.

I know that it is unrealistic to think that I can meet all of these goals in 2014.  Goal 1 - 5 are very doable but I fear it will take more time to reach number 6.

Please share my blog with your friends and family.  Hopefully it contains information that is new to you.

HAPPY NEW YEAR to you all!!

Nancy