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.
Sunday, February 3, 2013
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
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
Thursday, January 31, 2013
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
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
Sunday, December 16, 2012
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!!
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!!
Wednesday, November 14, 2012
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.
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.
Thursday, September 6, 2012
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.
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.
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.
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