Friday, February 28, 2014


Next week marks the 18th anniversary of the injury that caused my CRPS.  Last year at this time, it didn't even pop into my mind as we were waiting for Ian to be born.  I was feeling so positive and all was going well. Even the past years, this anniversary did not cause me to stop and rethink what I was doing.  This year is different.  I am questioning everything.

There is so much going on within the CRPS community that saddens me and sickens me.  We have lost so many CRPS warriors in the past 12 months. Was there something that we as a community could have done to prevent them from taking their lives? Is there something we can do in the future other than continuing to post suicide prevention hotlines?

We have seen attack after attack between one "organization" and another as well as within organizations.  I do not understand why this drama is necessary.  Why can we not all do what it is that we do best whether it be awareness, research, or funding treatments?  Why is it that their is a need to compete with one another.  We all have the good of the CRPS community in mind.

As people with CRPS we all have slightly different symptoms and respond to different treatments.  We have so few physicians treating the CRPS community.  Why are we arguing over who prescribes what to whom?  I have voluntarily been involved in multiple medication studies over the years.  How do we know what treatment will work unless we study it?

I do my best to try to help those who need information, referrals and financial assistance to get treatment.  I get so frustrated that I have to walk on pins and needles, worry about personal attacks and worse yet, personal attacks on those who I am trying to help.

What can we do to get everyone to work towards a common goal?    I guess I am just naive to think this is possible.

No comments:

Post a Comment