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.
Friday, February 28, 2014
Friday, February 21, 2014
CRPS: The Suicide Disease
In a few days, it will be the 18th anniversary of the accident that caused my CRPS. Over the years, I have talked to hundreds and hundreds of people. My doctor's office had me talk to people going for the coma ketamine treatment. Then I was a pain mentor with RSDHope and currently I am a pain ambassador for US Pain Foundation and run a support group on Facebook.
In my 18 years, I have not seen as many suicides as I have in the last 12 months. Some I met in person others I only knew via Facebook. I understand depression. I've been their. I understand the pain both physical and emotional that this disease inflicts on us. I do not judge these people who could not take it any longer. That is not my place. What bothers me is that people are using these tragedies to voice their own agenda. These families are hurting, Suicide is very hard for the ones who are left behind.
I will miss these CRPS Angels. I will speak to the families that reach out to me but I will not engage people who are using these tragedies to voice their own agenda. I'm sure that these people are passionate about their agenda. There is no evidence to back it up. The people I knew who took their own lives did not take this medication so it can not be the cause of their death.
RIP
Carla
Janet
Julie
John
Thomas
Leslie
You are no longer in pain. Our thoughts and prayers go out to your families. Your loved one is no longer in pain.
In my 18 years, I have not seen as many suicides as I have in the last 12 months. Some I met in person others I only knew via Facebook. I understand depression. I've been their. I understand the pain both physical and emotional that this disease inflicts on us. I do not judge these people who could not take it any longer. That is not my place. What bothers me is that people are using these tragedies to voice their own agenda. These families are hurting, Suicide is very hard for the ones who are left behind.
I will miss these CRPS Angels. I will speak to the families that reach out to me but I will not engage people who are using these tragedies to voice their own agenda. I'm sure that these people are passionate about their agenda. There is no evidence to back it up. The people I knew who took their own lives did not take this medication so it can not be the cause of their death.
RIP
Carla
Janet
Julie
John
Thomas
Leslie
You are no longer in pain. Our thoughts and prayers go out to your families. Your loved one is no longer in pain.
Saturday, February 8, 2014
Harmony
This month has had it ups and downs and we are just over a week into it. CRPS Partners In Pain was able to send one RSDer to a top notch doctor for a pain consultation. Tomorrow another is going to Clearwater for ketamine. While we are in the midst of doing what we feel is important work; there have been attacks on three of our board members.
First there was the WEGO Health Activist Awards. One of our ketamine klub members nominated me last year. Endorsements ended January 31. When some of our members looked at the judging process, they found that nominees in one category can be judges in another. When ketamine klub at large heard this, they began writing letters to WEGO in protest. Naturally the people who have been harassing us for several years, assumed that I was behind it. Well you know what happens when people ass-ume. I wrote to WEGO and asked them to remove my name from the nominees. I never heard back.
I do not want there to be discord within the RSD/CRPS community. In an ideal world we would all work together. If someone I speak to needs a service that CRPS PIP can't provide, I would like to be able to refer them to another group that can help them. If someone else speaks to someone with CRPS and their needs fit better with our business plan and philosophy then I would hope that they would send them our way. Unfortunately, this isn't happening. It is a great disservice to the CRPS community that we can't always get along.
Facebook has me frustrated even more. To run a Facebook group, you need to be able to message and friend perspective members. Evidentially Facebook has other ideas. Once again I'm in Facebook "jail" unable to friend or message people who are not on my friends list. We have often thought of taking the group off of Facebook but the decisive feelings of our members is that they don't want to have to go to multiple places for multiple groups. Only 6 weeks into the new year and I'm already in jail for 7 days. Grrr
CRPS PIP has some exciting events coming up. This fall we are going to do a 5K walk/run. Miss DE will be handing out metals. Her platform for the Miss USA competition is CRPS. How great is that?? We will also be having a silent auction with some gorgeous stain glass items, water color prints, etc. We have set a goal of raising $8,500 per quarter. In January we met our goal of $2,100. I'm hoping that we will be able to do as well this month.
On a personal note; Ian will be 11 months next week. Where did the time go? He is the most amazing little guy in the world (ok I'm prejudiced)
First there was the WEGO Health Activist Awards. One of our ketamine klub members nominated me last year. Endorsements ended January 31. When some of our members looked at the judging process, they found that nominees in one category can be judges in another. When ketamine klub at large heard this, they began writing letters to WEGO in protest. Naturally the people who have been harassing us for several years, assumed that I was behind it. Well you know what happens when people ass-ume. I wrote to WEGO and asked them to remove my name from the nominees. I never heard back.
I do not want there to be discord within the RSD/CRPS community. In an ideal world we would all work together. If someone I speak to needs a service that CRPS PIP can't provide, I would like to be able to refer them to another group that can help them. If someone else speaks to someone with CRPS and their needs fit better with our business plan and philosophy then I would hope that they would send them our way. Unfortunately, this isn't happening. It is a great disservice to the CRPS community that we can't always get along.
Facebook has me frustrated even more. To run a Facebook group, you need to be able to message and friend perspective members. Evidentially Facebook has other ideas. Once again I'm in Facebook "jail" unable to friend or message people who are not on my friends list. We have often thought of taking the group off of Facebook but the decisive feelings of our members is that they don't want to have to go to multiple places for multiple groups. Only 6 weeks into the new year and I'm already in jail for 7 days. Grrr
CRPS PIP has some exciting events coming up. This fall we are going to do a 5K walk/run. Miss DE will be handing out metals. Her platform for the Miss USA competition is CRPS. How great is that?? We will also be having a silent auction with some gorgeous stain glass items, water color prints, etc. We have set a goal of raising $8,500 per quarter. In January we met our goal of $2,100. I'm hoping that we will be able to do as well this month.
On a personal note; Ian will be 11 months next week. Where did the time go? He is the most amazing little guy in the world (ok I'm prejudiced)
Tuesday, January 7, 2014
LOSS IN THE CRPS COMMUNITY
Yesterday I learned of yet another loss of life within the CRPS community. Some of the six people who died in the past 12 months were straight up labeled suicide. The others, no other cause of death was given. I am struggling to think what could we as a community done to prevent this loss of life. I interact with about 600 people with CRPS. To loose 6 of them is devastating. I am at a loss as to what to do.
There needs to be some way that these people can reach out to another with CRPS. Yes their are suicide hot lines; but if you don't have CRPS you have no clue what it is like day to day. We publish suicide hot line numbers everywhere. How do we help these CRPSers know that they are loved, that there is hope and they are not alone?
I am open to any suggestions. I am thinking that before I write my pediatric book, I need to write something for both caregivers and people with CRPS about suicide...more that what is in book 1.
There needs to be some way that these people can reach out to another with CRPS. Yes their are suicide hot lines; but if you don't have CRPS you have no clue what it is like day to day. We publish suicide hot line numbers everywhere. How do we help these CRPSers know that they are loved, that there is hope and they are not alone?
I am open to any suggestions. I am thinking that before I write my pediatric book, I need to write something for both caregivers and people with CRPS about suicide...more that what is in book 1.
Monday, January 6, 2014
A New Year and New Goals
As we begin the first full week of 2014, I have set some goals for this new years. Here are my hopes for 2014
First and foremost, I need to stay healthy. If I am not healthy, I can't help anyone.
2. Spend time with my grandson Ian!
3. Raise money for CRPS Partners In Pain, Inc. Our first quarter goal is to raise $8,500. This will permit us to provide ketamine treatments to one person for one full year. That includes the loading dose (5 days at $500/day) at $2,500 and boosters every other month at $6,000. In 2013, we were able to help one person pay their COBRA Health Insurance so that they could continue to have treatment for their CRPS. We funded 2 people's ketamine treatment, boosters for 2 people and medications that were not covered by insurance for another. In order for us to help more people in 2014, I need everyone that I know to donate just $10 and share our donation requests with their friends. Donations can be made by going to www.crpspartnersinpain.com and click on donate.
4. Write a book on Pediatric Pain for children and their families.
5. Continue as a co-admin of Ketamine Klub
6. I so much want to find a place where those with CRPS who either live alone or with elderly parents can pull their resources and live together. Most are on fixed incomes that barely cover the basics. If you took 5 people and their incomes the standard of living would improve for all. They would be able to support each other emotionally, help with treatments and know that they are not alone in this battle. The problem is finding an organization willing to donate a house in a warm climate and near a reputable CRPS doctor.
I know that it is unrealistic to think that I can meet all of these goals in 2014. Goal 1 - 5 are very doable but I fear it will take more time to reach number 6.
Please share my blog with your friends and family. Hopefully it contains information that is new to you.
HAPPY NEW YEAR to you all!!
Nancy
First and foremost, I need to stay healthy. If I am not healthy, I can't help anyone.
2. Spend time with my grandson Ian!
3. Raise money for CRPS Partners In Pain, Inc. Our first quarter goal is to raise $8,500. This will permit us to provide ketamine treatments to one person for one full year. That includes the loading dose (5 days at $500/day) at $2,500 and boosters every other month at $6,000. In 2013, we were able to help one person pay their COBRA Health Insurance so that they could continue to have treatment for their CRPS. We funded 2 people's ketamine treatment, boosters for 2 people and medications that were not covered by insurance for another. In order for us to help more people in 2014, I need everyone that I know to donate just $10 and share our donation requests with their friends. Donations can be made by going to www.crpspartnersinpain.com and click on donate.
4. Write a book on Pediatric Pain for children and their families.
5. Continue as a co-admin of Ketamine Klub
6. I so much want to find a place where those with CRPS who either live alone or with elderly parents can pull their resources and live together. Most are on fixed incomes that barely cover the basics. If you took 5 people and their incomes the standard of living would improve for all. They would be able to support each other emotionally, help with treatments and know that they are not alone in this battle. The problem is finding an organization willing to donate a house in a warm climate and near a reputable CRPS doctor.
I know that it is unrealistic to think that I can meet all of these goals in 2014. Goal 1 - 5 are very doable but I fear it will take more time to reach number 6.
Please share my blog with your friends and family. Hopefully it contains information that is new to you.
HAPPY NEW YEAR to you all!!
Nancy
Tuesday, December 31, 2013
Suicide
I thought that my last post would be my final post for 2013 but circumstances have changed.
Over the weekend we lost to suicide someone who was very active in the CRPS community. This was the fifth person this year to take their life due to CRPS. I connect with about 500 people and there are 5 suicides that I know about. Who knows how many more we have lost this year alone.
I want to so something to get the word out that CRPS is known as the Suicide Disease. I have shared my story with my readers about my dark days. I feel the need to do more. I would like to see Dr Phil do a show on CRPS and Suicide. This is right up his ally as his show deals with psychological issues. It would be great if the audience could all be those of us with CRPS. Please join me in a writing campaign to Dr Phil.
http://www.drphil.com/beondrphil_main/
In honor of those with CRPS who took their life, let's all post this as our status. We all need to write into Dr Phil and ask him to do a show on CRPS and suicide. To those who have lost a loved one to suicide; please share your story as a survivor. To those of us who have attempted suicide in the past, please share your story. To those now thinking about suicide, please call a suicide hot line:1-800-273-8255
National Suicide Prevention Lifeline
and then write your feelings to Dr Phil. Dr Phil is the only show that deals only with psychologic issues. Perhaps we could get Dr Pradeep Chopra to write in and to be the expert that advises Dr Phil. If I personally know of five people who in 2013 have CRPS who committed suicide; then how many were there that we didn't hear about.
Wishing you all a low pain Happy New Year!!!
Nancy Renée
Over the weekend we lost to suicide someone who was very active in the CRPS community. This was the fifth person this year to take their life due to CRPS. I connect with about 500 people and there are 5 suicides that I know about. Who knows how many more we have lost this year alone.
I want to so something to get the word out that CRPS is known as the Suicide Disease. I have shared my story with my readers about my dark days. I feel the need to do more. I would like to see Dr Phil do a show on CRPS and Suicide. This is right up his ally as his show deals with psychological issues. It would be great if the audience could all be those of us with CRPS. Please join me in a writing campaign to Dr Phil.
http://www.drphil.com/beondrphil_main/
In honor of those with CRPS who took their life, let's all post this as our status. We all need to write into Dr Phil and ask him to do a show on CRPS and suicide. To those who have lost a loved one to suicide; please share your story as a survivor. To those of us who have attempted suicide in the past, please share your story. To those now thinking about suicide, please call a suicide hot line:1-800-273-8255
National Suicide Prevention Lifeline
and then write your feelings to Dr Phil. Dr Phil is the only show that deals only with psychologic issues. Perhaps we could get Dr Pradeep Chopra to write in and to be the expert that advises Dr Phil. If I personally know of five people who in 2013 have CRPS who committed suicide; then how many were there that we didn't hear about.
Wishing you all a low pain Happy New Year!!!
Nancy Renée
Sunday, December 15, 2013
2013 in review and planning for 2014
2013 has been a crazy year for me. Obstacles kept popping up. Hopefully most of these obstacles have been resolved (child care, health issues in DC). In 2014, I plan to continue to be very involved in Ian's life. This means travel. I have been a Guardian ad Litem for two years and have had two cases. Both were adopted in 2013. I feel that it would not be fair to a child in foster care or their family to take on a new case. I started being a Guardian ad Litem to make a difference in the lives of children in foster care. I still feel that they need an advocate but I have too much on my plate right now to be able to give the time needed to take on another case.
Ketamine Klub: I meet so many people through this Facebook group. We have close to 600 members; many of whom have been a part of the group for a long time and are able to help new members. I also have great co-admins who can fill in. More than two years ago Sandy and I took over as admins of K Klub and have seen new members blossom and become advocates for others. This is too important to me for me to give it up.
Loved Ones Group: I hoped from the beginning that one of the members would step up and take it over just like with Teens to Thirty. A group of members rose to the occasion and I was able to slowly to ween myself out of the group. There are other parents' groups through TCAPP; so if I need to dissolve the group, these parents will have somewhere else to go.
CRPS PIP: This is my baby. There is so much more that I want to do with our non-profit. I need to devote more of my time on fundraising and helping people who wouldn't otherwise get treatment. The symposium was a wonderful experience. It was very time consuming but the end result was great. There are two long term projects that I would like to see us work towards. A mentor program and a house where those with CRPS who are single or living with elderly parents can live together like a co-op. These are long term goals and will take time and effort.
I want to write a book on Pediatric Pain. I was a peds nurse for 10 years. We had chronic patients but they were not chronic pain patients. I will need to do some research in order to write this book. At this point I haven't even come up with a title. Even when I am in DC, I'll have my evenings to research and write. This is the easiest to fit into a time frame because I only need the Inter net and my computer to work on it.
I would like to set up a FL support group where we can meet in person in different areas around central FL. I will need a partner in developing this as I can't take on too much as again I will be traveling.
I have learned a lot in 2013. I very rarely feel overwhelmed but for a good part of 2013 that is how I felt. That is not good for my health or for the projects that I am working on. I want to continue to make regular visits to DC to spend time with Kim, Bennett and Ian but there should not be any emergency child care issues and hopefully no emergency health issues. Knowing in advance when I will be away and when I will be home should help me to organize my time better.
To my followers: Merry Christmas and wishes for a low pain healthy 2014. Thank you for your support.
Nancy
Ketamine Klub: I meet so many people through this Facebook group. We have close to 600 members; many of whom have been a part of the group for a long time and are able to help new members. I also have great co-admins who can fill in. More than two years ago Sandy and I took over as admins of K Klub and have seen new members blossom and become advocates for others. This is too important to me for me to give it up.
Loved Ones Group: I hoped from the beginning that one of the members would step up and take it over just like with Teens to Thirty. A group of members rose to the occasion and I was able to slowly to ween myself out of the group. There are other parents' groups through TCAPP; so if I need to dissolve the group, these parents will have somewhere else to go.
CRPS PIP: This is my baby. There is so much more that I want to do with our non-profit. I need to devote more of my time on fundraising and helping people who wouldn't otherwise get treatment. The symposium was a wonderful experience. It was very time consuming but the end result was great. There are two long term projects that I would like to see us work towards. A mentor program and a house where those with CRPS who are single or living with elderly parents can live together like a co-op. These are long term goals and will take time and effort.
I want to write a book on Pediatric Pain. I was a peds nurse for 10 years. We had chronic patients but they were not chronic pain patients. I will need to do some research in order to write this book. At this point I haven't even come up with a title. Even when I am in DC, I'll have my evenings to research and write. This is the easiest to fit into a time frame because I only need the Inter net and my computer to work on it.
I would like to set up a FL support group where we can meet in person in different areas around central FL. I will need a partner in developing this as I can't take on too much as again I will be traveling.
I have learned a lot in 2013. I very rarely feel overwhelmed but for a good part of 2013 that is how I felt. That is not good for my health or for the projects that I am working on. I want to continue to make regular visits to DC to spend time with Kim, Bennett and Ian but there should not be any emergency child care issues and hopefully no emergency health issues. Knowing in advance when I will be away and when I will be home should help me to organize my time better.
To my followers: Merry Christmas and wishes for a low pain healthy 2014. Thank you for your support.
Nancy
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