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

Year In Review

As the year comes to an end, I usually look back on what has happened and forward to the coming year.

Over all 2012 was a good year. I started a book on CRPS/RSD which I hope will be published this coming spring. Fellow RSDers and I have started a non profit to help those unable to get treatment financial help. Here is the link:
www.crpspartnersinpain.com

Personally, I learned that I will be a first time grandmother in March 2013.
I have met wonderful people who have responded to this blog or to the Facebook groups where I am an admin.
 Ketamine Klub For CRPS/RSD Patients
Ketamine Klub 2 For CRPS/RSD Patients monitored by Dr. Pradeep Chopra
Caregivers of CRPS/RSD Patients
Teen To Thirty: CRPS/RSD Support

We are raising awareness and informing the public about CRPS treatments, feeling and caring for someone with CRPS.



2013 is right around the corner. Through the above organizations, my book and non profit I hope to positively influence those who have CRPS, those who know nothing about CRPS as well as educations physicians of caring for the CRPS patient.

Merry Christmas and a Happy Healthy 2013!!

CRPS Awareness Month

Wow! It is hard to believe that November is half over. November is CRPS Awareness month. I am currently in the hospital for migraine treatment. Every nurse and doctor who enters my room gets my CRPS Speach.

The book that I have been writing has taken me away from my blog. It should be published in early 2013. I am also working on starting a non profit to help those whose insurance doesn't cover their treatments. I talk to people every day who aren't getting treatment for a variety of financial reasons.

Please help me to spread CRPS Awareness this month.

Involved in a legal issue regarding RSD?

If you are involved in litigation surrounding your RSD, you might want to look into having a life care planner who specializes in RSD to assist you in your fight.  There is an excellent article about it at RSDSA.org. ( http://rsds.org/4/resources/Life_Care_Plans.html)

It is an important part of your case to show what treatments you are likely to need while living with RSD.  Check it out.

Follow up on Carpal Tunnel Surgery

I haven't been blogging because my RSD spread into my hand after the carpal tunnel surgery.  I knew going into this surgery that there was a 50% chance of spread but my doctor thought that by getting Ketamine during the surgery and immediately after that this would prevent spread.  Well it did not.

I was started on LDN (Low Dose Naltrexone - www.ldn.org) and got another round of Ketamine.  Two and a half months after the surgery, my hand is improving.  A great weight has been lifted for me. I depend on my upper body to compensate for lower extremity RSD.  Not being to use my dominant hand was an experience that I never want to repeat.

Carpal Tunnel Syndrome Surgery

It has been a while since I have posted. My worst nightmare came true following the carpal tunnel release

The Carpal Tunnel Release Surgery and RSD

High Dose Ketamine and CRPS/RSD Spread

Wednesday June 20^th, I finally had my carpal tunnel release surgery with the wonderful Dr. Brian Leung.  I had it arranged that I would get 100 mg of Ketamine during the surgery and would then drive down to Miami for high dose Ketamine with Dr Denmis Patin the following week.

The risk of spread of the RSD from carpal tunnel release surgery is 50%.  My dilemma was that I was losing function of my right hand due to the carpal tunnel syndrome.  I was having difficulties doing my activities of daily living.  So if I didn’t do the surgery, I could totally lose function of my dominant hand.  If I had the surgery and the RSD spread to my hand, I would not only lose function but have pain as well.  After talking to my RSD neurologist, we decided that the risk would be greatly reduced if I had Ketamine during and after the surgery.  Of course he could not make a promise that I still wouldn’t have RSD spread; there are no promises when it comes to this disease.  I weighted the risks and benefits and decided to have the surgery.

I had arrangements made for a friend to drive me to and from the surgery and another friend to accompany me to Miami for the Ketamine as it is required that someone spend the night with you after the infusion.  Two weeks prior to the surgery, the friend who was going to go to Miami with me had a person issue come up and all of a sudden, I had no one to spend the night with me.  Fortunately I was able to get another friend to stay with me. She lives in Miami so I would make the drive to and from Orlando on my own.

The surgery went well.  I was in a bit more pain than I expected, but nothing that I could’t handle.  It did cause a flare in my RSD however.  I expected that.  I had hoped that by getting the Ketamine during the surgery that I wouldn’t flare, but for me 100 mg isn’t enough to prevent me from flaring.

Sunday, I headed down to Miami driving through tropical storm Debby.  That was a harrowing drive.  I was never more relieved than when I pulled up in front of the Spring Hills Suites!!

Monday through Wednesday, I got 200 mg per hour of Ketamine along with IV Versed and IV Ativan.  The resident was wonderful as is the nursing staff at Sylvester Cancer Center’s Surgical Center.  I can not say enough about the staff there!!  The resident made sure that I was asleep the entire time so that I would not have any negative side effects from the Ketamine.

When I got home, I still had a suture in my wrist and was still having some burning pain.  I rubbed my Ketamine cream into my hand four times a day.  Within 48 hours, the burning was gone and although I was still having surgical pain it was soothed by NSAIDs.

Tuesday July 3^rd, I saw the surgeon and the suture was removed.  I had my first OT session.  I realized during the OT session how far I have to go to get full range of motion back.  During this week doing the home exercises, I have already seen improvement.

Thanks to a great surgeon, high dose Ketamine and now OT, I feel confident that I made the right decision to have the carpal tunnel release surgery with the high dose Ketamine.

 Immediately after surgery this is what my hand looked like

This is my hand July 6, 2012 sixteen days after surgery and a week after high dose Ketamine.