Saturday, February 8, 2014


This month has had it ups and downs and we are just over a week into it.  CRPS Partners In Pain was able to send one RSDer to a top notch doctor for a pain consultation.  Tomorrow another is going to Clearwater for ketamine.  While we are in the midst of doing what we feel is important work; there have been attacks on three of our board members.

First there was the WEGO Health Activist Awards.  One of our ketamine klub members nominated me last year.  Endorsements ended January 31.  When some of our members looked at the judging process, they found that nominees in one category can be judges in another.  When ketamine klub at large heard this, they began writing letters to WEGO in protest.  Naturally the people who have been harassing us for several years, assumed that I was behind it.  Well you know what happens when people ass-ume.  I wrote to WEGO and asked them to remove my name from the nominees.  I never heard back.

I do not want there to be discord within the RSD/CRPS community.  In an ideal world we would all work together.  If someone I speak to needs a service that CRPS PIP can't provide, I would like to be able to refer them to another group that can help them.  If someone else speaks to someone with CRPS and their needs fit better with our business plan and philosophy then I would hope that they would send them our way.  Unfortunately, this isn't happening.  It is a great disservice to the CRPS community that we can't always get along.

Facebook has me frustrated even more.  To run a Facebook group, you need to be able to message and friend perspective members.  Evidentially Facebook has other ideas.  Once again I'm in Facebook "jail" unable to friend or message people who are not on my friends list.  We have often thought of taking the group off of Facebook but the decisive feelings of our members is that they don't want to have to go to multiple places for multiple groups.  Only 6 weeks into the new year and I'm already in jail for 7 days.  Grrr

CRPS PIP has some exciting events coming up.  This fall we are going to do a 5K walk/run.  Miss DE will be handing out metals.  Her platform for the Miss USA competition is CRPS.  How great is that??  We will also be having a silent auction with some gorgeous stain glass items, water color prints, etc.  We have set a goal of raising $8,500 per quarter.  In January we met our goal of $2,100.  I'm hoping that we will be able to do as well this month.

On a personal note; Ian will be 11 months next week.  Where did the time go?  He is the most amazing little guy in the world (ok I'm prejudiced)

1 comment:

  1. You deserve to be nominated Anita! I asked for my nomination to be withdrawn.

    Here we are grieving for yet another fellow warrior who was in such pain that she felt the only option was to take her own life. She was so loved and respected yet people felt they had to violate her page with nonsense forcing her family to deactivate her account w/o hearing how much she was loved and respected.