Harmony

I do not understand why everyone with organizations helping people with CRPS/RSD feel that it is a competition.  Why can we not work together to help one another?  Why attack others who are trying to help those with CRPS/RSD.

I know that the CRPS community is a representative of society where unfortunately there are people who are nasty and unscrupulis.  You would think that because they know how difficult it is to live with this monster, that they would have more compassion for one another.

I could sit here writing and name names of those who are making it their mission to try to stop CRPS Partners In Pain, Inc and our board from helping others.  I will not stoop to their tactics.  I will not give them the satisfaction of affecting the good work that we are doing for others.

Everyone associated with CRPS Partners In Pain, Inc volunteers their time.  No one take a salary.  We all either have CRPS or have a family member with CRPS.  Every donation goes directly to help those who otherwise would not be able to get treatment.  Additionally, we try to provide information on CRPS/RSD.  RSDSA.org has great research articles and information on learning more about CRPS/RSD.  I support their efforts 100%.  The board of CRPS felt that there was no need to duplicate the fine work that RSDSA.org is doing with research funds and education.  They also have a small fund to help people with RSD catch up with bills and assist with treatment.  We felt that we could be more effective just trying to get those with CRPS who otherwise would not be able to afford treatment some financial assistance.

There are several CRPS/RSD non-profits.  We each need to work together toward the betterment of the CRPS/RSD community.  I freely vow to help any of the other organizations that represent chronic pain patients or specifically RSD.  Some of these organizations are:
www.rsdsa.org
www.rsdhope.org
www.forgrace.org
http://powerofpain.org
US Pain Foundation

As members of the chronic pain community, we need to work together.

Going Gluten Free

Well today I am starting a gluten free diet.  It isn't because I have celiac disease or any known gluten sensitivities.  My PCP suggested going gluten free and preservative free to help with my joint pain.  I was eating preservative free during the four months that I lived with my daughter, son in law and grandson as they eat preservative and organic.  I did all of the cooking.

I ordered a cookbook that arrived today and did some grocery shopping as well.  I am not much of a bread eater.  So cutting out wheat bread shouldn't be a problem.  I actually made a gluten free potato muffing for my "kids" last week and it was very good.  I make a to die for pumpkin cookie recipe which I think that I can substitute the wheat flour with another.

The hardest thing for me to give up is my coke zero.  I brewed a large batch of green tea and started drinking that this morning instead of my morning coke zero.  I hate coffee.

After going gluten free for 8 weeks, I am going to add PurePea which has also been recommended.  I do not want to start both at the same time as then if I feel an improvement, I won't know which one it is.

Back at Home

This has been a crazy year for our family.  The birth of our grandson Ian Alexander Hawley has brought so much joy into our lives.  I spent a winter in Washington DC.  It was my first winter up north in seven years.  I did okay during the winter.  It was June/July with it's rain that caused me the most issues.  Both of my feet have been swollen and cracked

NEW ON LINE SUPPORT GROUP FOR CRPS RUN BY NANCY RENEE COTTERMAN

Facebook has been making all sorts of changes making it very difficult to run our support group: Ketamine Klub For CRPS/RSD Patients.  I am starting a new support group which will give information on all treatments for CRPS, research articles and support for it's members.  The group can be found on the web site for my non-profit:  www.crpspartnersinpain,com

Click on CRPS Support Group and sign up.  Right now I have to approve all posts.  Once we all get familiar with this new protocol, I will remove the caveat that I must approve all posts.  Please join me in our new support group.

For those in Ketamine Klub For CRPS/RSD Patients, the site will remain there but I will not be receiving email updates after mid-August as I am going to deactivate my account.

Sincerely,

Nancy Renée Cotterman 

Strength

It has been quite a while since I have had time to post.  It is amazing what you can do when you have to.  Since Ian was born, just over 4 months ago, I've been doing things that I haven't done in years.  There have been some ups and downs since Ian arrived and I was able to step up and help out.  I surprised even myself.

Having Ian in my life has been a great joy.  He is always smiling and happy.  I have been here in DC with him all but 2 weeks and 4 days of his life.  I have watched my daughter bloom into a wonderful mother and my son in law a wonderful involved father.

Next week Kim's best friend will begin to take care of Ian and another 4 month old as part of a nanny share.  My role will begin to wain.  It is great that things have stabilized but I will miss being here every day seeing everything that Ian does.

Reflections

I have been in Washington DC for nearly 12 weeks now for the birth of my first grandchild.  I have one week left until I must head home.  It is going to be extremely difficult to leave.  A lot has happened in this 12 weeks that have required me to push beyond my CRPS limits.  I've been doing things that I haven't done in years.  For example: I walk to and from my apartment and my daughters house daily (a half mile).  I have been doing housework, laundry and grocery shopping.  All of these are things that I ordinarily do not do.  In spite of all of this extra physical activity, I have only had one really bad flare up.  I guess it has really been a mind over matter experience.  I've been beyond exhausted at the end of every day but exhausted in a good way.

I am honored that my daughter and son in law wanted me here for Ian's birth.  Even though his birth didn't go as planned, we managed.  We had some other difficulties that put more of the responsibility of daily activities on me but I have enjoyed being needed.

I am already planning my next trip to visit so that it won't be as difficult to leave.  When I return he will be twice as old as he is now (now 2 mo will be 4 mo in July).  I doubt that he will remember me after that length of time.

This has been one of the most memorable times of my life; after the birth of my own children and my wedding.  My goal is to be able to come up here at least quarterly so that I can have the type of relationship with Ian that Kim and Laura had with their grandparents.

Book Release

Hi!
I am pleased to announce that my book CRPS/RSD Facts, Fiction and Feelings is now available as an e-book.  Go to:  www.crpspartnersinpain.com to order your copy.  All proceeds will go to CRPS Partners In Pain.  CRPS Partners In Pain is a 501 ( c ) 3 non-profit whose sole purpose is to assist those in financial need get the treatment that they would otherwise be unable to obtain.

Additionally on our web site, you will find information on CRPS and current articles of interest to those with CRPS.

~Nancy Renée