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

Being a grandmother with CRPS

March 12, 2013 my adorable grandson, Ian Alexander was born.  I traveled up to Washington DC on February 25th to be there incase the baby came early.  I was a childbirth educator, pediatric nurse and a midwife prior to CRPS.  I was honored that both my daughter and son in law wanted me to be there with them during the birth.  At 39 1/2 weeks, the baby turned breech.  Attempts to turn him failed.  Being well versed with the medical profession; my job was to make the hospital experience as uncomplicated as possible.  We had only met the physician who delivered Ian once.  He arranged for Kim to have the cesarean.  From the anesthesiologist who allowed Bennett to be in the room while the spinal was given, to the pediatricians who allowed me to follow Ian to the nursery for his first exam, to the nursing staff who helped us breeze through the check list to discharge quickly everyone did their best to make it a good experience.  Since Kim, Bennett and Ian were being discharged with a RN, we left the hospital in 40 hours after Ian's birth.

Kim was amazing.  Taking nothing stronger than Ibuprofen for pain, she breezed through the first two weeks postpartum.  She began running at 4 weeks postpartum.

From the time we entered the hospital March 12th until now, I have been walking 1/2 a mile to and from my apartment to their house, making meals, doing grocery shopping, laundry, etc.  All things that I do not do at home.  By 5 weeks after Ian's birth, I had cellulitis (an infection of the skin and underlining tissue) and sores on the bottom of my foot.  A photo texted to a RSD doctor and a call to my physician got it under control in a few days but it was a tough few days.

Right now, the only things that Ian needs me to do are to hold him, and change his diaper.  Once he becomes mobile, will I be able to keep up?  I guess if the last two months are any indication, I hopefully can.

I look at my daughter (my baby) holding her son and watching her as a wonderful mother gives me hope that I will be able to continue to assist them and be involved in Ian's life to the best of my ability.

Anniversaries

3/4/96 at 7 p.m. the car accident that changed my life occurred.  For years, I would be depressed around this date.  For the past few years, I remember what happened on that cold March evening, but not with sadness.  For most people who have had a traumatic event in their life, whether it be the death of a loved one, an accident or a diagnosis, certain feelings come up surrounding that anniversary.  Many get angry all over again, others get depressed and others choose not to let this affect them year after year.  Life altering events cause us to grieve.  We grieve for what could have been.  We are angry that it happened to us.  If you go full circle in the grieving cycle, you finally come to acceptance.  Acceptance in no way means that you roll over and give into the disease, accident or diagnosis.  Acceptance is what you need to do to move on with your life.

Believe it or not, wonderful things can come out of a tragedy.  I was once asked to write down all of the positive experiences that I have had since my accident.  Believe it or not, there are many:

• I learned how strong of a person I am
• I have met wonderful supportive people who I never would have met without having CRPS
• I have been able to put the skills that I have learned through nursing, to help people who otherwise may not have had access to that information 
• I feel that my girls are more compassionate and caring women that perhaps they would have been
• I learned that many of my friends, were not true friends because they drifted away after my diagnosis and yet there are friends who have hung in with me for the past 17 years.  I know that they are truly my friend.
• I feel like there is a reason that this all happened to me because I am able to help others who have not lived with this disease as long as I can.

So I celebrate today.  I have learned over the years to pace myself, to choose what is the most important things and do them knowing  that the next date I would pay for it with a higher pain level.  There are some things that are worth doing even though you know that you will over do it.

Over the years, I've wondered if the 19 year old who hit me even remembers this day.  I seriously doubt it. There is no way that she could know the events that followed that accident.  She has no way of knowing the years of pain and anguish that that accident caused me to have.  She was simply a 19 year old headed towards an intersection on her way to a date, who made a mistake and hit my car while she was making a left turn.  We are all human. We all make mistakes. It just so happened that her mistake caused a huge impact on my life.  She had no way of knowing that.  I will always remember her name, but I'm sure that she doesn't remember mine.  That's ok because I'm ok.

New To RSD?

https://www.facebook.com/groups/CRPSRSDINFO/

I have started a facebook page for those who are newly diagnosed with CRPS/RSD.  The link is above.  It will help you sort out doctors, treatments and share with others in the same situation.

Helping Those In Need

For most people with CRPS/RSD ketamine is the only treatment that reduces our pain.  Opioids actually make us more sensitive to pain.

Right now, I am circulating a petition that I will hand deliver to the FDA this spring.

http://signon.org/sign/fda-approval-for-ketamine.fb23?source=c.fb.ty&r_by=6720555

My hope is that if the FDA approves Ketamine for the treatment of CRPS/RSD and changes the classification to class 3 from a class one medication, then we will be able to convince insurance companies to reimburse physicians who treat with ketamine for CRPS/RSD an amount of money that allows them to accept insurance.  Ketamine is an inexpensive drug.  That is not the issue.  The infusion of Ketamine requires monitoring: heart monitoring, blood pressure monitoring, blood oxygen monitoring and a nurse to watch over the patient.  For small practices the near $340 that Medicare pays, the $95 that Blue Cross pays doesn't come near to covering the salary of a nurse let alone the purchase of the monitoring equipment.  It is for this reason, physicians charge from $500 to $2,500 per infusion.  They collect directly from the patient.

There are larger practices who can treat 10 or more patients at one time with Ketamine infusions using one nurse to oversee them all.  For these larger practices, the larger number of patients being treated at the same time can survive on insurance reimbursement.  There are very few practices that are able to do this.

This leaves most CRPS/RSD patients paying thousands of dollars for treatment of their chronic pain.  Most are on a fixed income such as workman's compensation or social security disability.  They can not afford to spend this amount of money for treatment.

CRPS Partners In Pain, a non profit entity, is raising money to offer scholarships to people with CRPS/RSD in financial need to cover their treatments.  We need people to help with fundraising, to make items that can be sold to raise money and to donate a tax deductible donation.  We need this to go viral.  We need people to share this with all of their family and friends.

www.crpspartnersinain.com is a way that you can donate to help those of us who can't afford treatment.  Please pass this along to all of your friends and family and help us make a difference in the lives of those confined to bed due to their excruciating CRPS pain.

I hope that you will take a minute to donate and to pass this message on.

Nancy

Non Profit

For several years now, I have heard the stories of those with CRPS/RSD who can not afford treatment either because their insurance won't cover it, their workman's compensation won't cover it or they had no health insurance.  I am fortunate that my husband has a good job with good insurance.  I wondered what could be done to help these people.  I have helped people fight their insurance.  I did that as part of my job as a nurse so I am fairly good at that.  There are only a hand full of doctors who are considered CRPS/RSD experts so even if I was able to successfully fight the insurance; they then had to find a way to save up for travel and lodging.  A few of us thought that perhaps we could start a non profit group with the sole objective of helping those with CRPS/RSD pay for treatment.

In December 2012, things came together and we were able to launch CRPS Partners In Pain. (www.crpspartnersinpain.com)

We are now in the process of trying to raise money in order to meet our objective.  I have written a few grants, people are making items to sell on Ebay but what we need is a grant from some one or an agency that wants to help people who are in excruciating pain 24/7.  So far we haven't found that person or group.

If you know of someone who would like to make a tax deductible donation, please go to our site.  There is a portal there that allows you to make a donation from your computer.

Nancy