Anniversaries of the incident that caused our CRPS are difficult. For me, this one is particularly difficult. Twenty years ago today, on my way home from opening a home care case when I was hit head on by a 19 year old on her way to a date. It is the 20 years that is tough. From the beginning of 2016, it has been haunting me. This is not like me. It has been a really tough three months.
Today, I refuse to sit at home and cry. I refuse to sit home and feel sorry for myself. I plan to go out and do some shopping for my grandson and grand baby due this summer. Tonight, my husband, mom and I are going out to dinner. My accident was days before my husband's 40th birthday. The accident ruined my husband's 40th birth but it will not ruin his 60th birthday. My husband will be away on his birthday so we are going to go out and celebrate.
Thursday, March 3, 2016
Friday, February 5, 2016
An Interview by Nancy Renée Cotterman of CRPS Partners In Pain, Inc and Charles Mattocks of Trial By Fire
Nancy Renée Cotterman, of CRPS Partners In Pain, Inc., recently spoke with Charles Mattocks, director of Trial By Fire, a film based on complex regional pain syndrome (CRPS). Charles is known as a celebrity chef, an Emmy-award nominated actor and film and television producer about what inspired him, his history with the disease and what people can do to help patients and advocates of CRPS. Nancy and CRPS Partners In Pain, Inc. were instrumental in making introductions that got this project started. We at CRPS Partners In Pain, Inc. are so proud to have played a part in this ground breaking film about CRPS (Complex Regional Pain Syndrome)
Nancy to Charles:
Charles, it was a year ago that you first contacted me and started the journey that is now Trial By Fire. What is the most important thing that you have learned in making this film?
Charles:
I've learned that I'm thankful each day that I don't have to experience the type of pain I have seen, to be honest, I'm not sure I could handle it. While I think that I am strong, this takes the strength that at times is super human. I give a lot of credit to the people of CRPS, many deal with pain, some work jobs and take care of their families. I've also learned how amazingly talented in wanting to give, that many are in the community. There are people that help each day that I am thankful to have in my life. They do the work of a thousand, for people who never know that they are fighting for them.
Nancy to Charles:
What surprised you the most while creating this film?
Charles:
The fact that we couldn't and didn't get support from the medical and pharmaceutical companies. There's a division in the community that seems to hold back organizations from working together, and some of the people putting negative energies toward one another. I've heard too many stories of people leaving groups, being hurt, and depressed by negative comments or slander. I understand people have different views, but maybe I thought, those could be put aside for the bigger picture. I feel that the world is looking at CRPS and I'm praying that those with issues can focus on the bigger picture, because there are too many hurting that need help desperately. That is what is really key, not who doesn't like me or some other people, but the people.
Nancy: We should all work together. We fight this monster day in and day out. We shouldn't be fighting each other as well. It is what distresses me the most as a member of the CRPS community trying to make a difference
Nancy to Charles:
What do you hope will be accomplished by Trial By Fire?
Charles:
When I first started talking talking to people in CRPS, I heard they needed a voice, I heard they needed a face. I don't claim to be that, but I hope what I brought helps spark a fire, helps create conversation, helps bring awareness. Some who have seen the film, tell me Charles, "my husband, my wife, my mother didn't understand how serious this was and after seeing the film they did." As much as this is for the people of CRPS, it's even more so for the doctors, the friends, the family members, the undiagnosed, who need to know about this disease.
Nancy to Charles:
How has this journey impacted you? Your mom?
Charles:
Mom is on a journey that she sees little hope ,right now it is just about quality of life. It's about living the best she can with the least amount of pain. I think she has given upon a cure and even treatment, but is trying to do the best she can each day. For me, I have met friends and what I call family members, for what I hope will remain with me forever. I have seen the best and the strongest through pain.
Nancy to Charles:
5. Since creating this film what do you think needs to be done to help those with CRPS? Especially regarding medical treatments?
Charles:
I am a man at times, of many words, but this is one that leaves me clueless. Many companies are motivated by money. If there is no money in a treatment or cure they won't pour hundreds of millions into it, because that is what it takes for a cure. I hope that there is something that is already out there to help on the market. I hope that a miracle happens, but I think this film might help at least open a door to a conversation getting started. At times, we force them to care.
Nancy to Charles:
6 .What moment during filming stands out the most?
Charles:
Losing Hannah at 19, two days after wrapping the film. I remember walking the street in shock as I had just seen her two weeks before. I think that is what stands out the most. There were amazing memories, but that one is what stays in my mind.
Nancy: It is horrible when we loose someone as young and sweet as Hannah. It never gets any easier. She was a ray of sunshine even though she lived in horrific pain trapped in a body that did not allow her to do the things someone her age should be able to experience.
Friday, January 29, 2016
Trial By Fire
Marie McGowin of CRPS Partners In Pain, Inc. recently spoke with Charles Mattocks, director of Trial By Fire, a film based on complex regional pain syndrome (CRPS). Charles is known as a celebrity chef, an Emmy-award nominated actor and film and television producer about what inspired him, his history with the disease and what people can do to help patients and advocates of CRPS.
What inspired you to make Trial by Fire?
What inspired me was the fact that my mother was diagnosed 8 years ago with CRPS and my father had just died a couple months earlier from cancer literally out of nowhere. So I remember going to her house and she was having a very bad day and talking about wishing she wasn’t here type thing. That really moved me because it was like, I just lost my father and didn’t want to lose a mother less than a year later.
So I realized because I had done so much work in diabetes as far as being an advocate for that and I had a background in that, so I figured, you know what, I was also directing a film on diabetes that I’ve been directing around the world. So I figured I would kind of step up for the people of CRPS because from what I saw didn’t really have a face or a voice and I figured I could combine the 2 of being not only an advocate for CRPS but also doing something to kind of tell my mother’s story while I try to figure out how I can help her.
In your own words, what is CRPS?
It’s Complex Regional Pain Syndrome and obviously it’s a rare disease that comes from some form of contusion or some trip or fall or people get it from even blood draws. It’s a painful disease that’s rated higher up on the pain scale, higher than amputation and childbirth. So the people living with this are living with a severe pain that’s daily is just intolerable at times.
Can you talk a little about the patients and families you spoke with for the film?
I spoke to one young girl, her name was Hannah. She was at the time 19 years-old. She was suffering very badly from CRPS. She had a great support system. Her mother named Janet was there to work with her. CRPS had clearly run rampant on her and she was pretty much paralyzed. Her eyesight was affected. Her internal was affected, so she was also. She had to eat through a feeding tube. She actually passed away 2 days after completing the film from complications of CRPS.
I had a young girl who’s 15 years-old now, a beautiful young girl with a great support system. But once again, the CRPS has run rampant on her too where once again it’s affecting her internal and she also has to eat through a feeding tube. But she is trying to live the best life she can. She’s going to school now and even though she can’t really get around the way she should. She’s in a wheelchair at times.
I spoke to another young gentleman named Clark who was once a tennis pro who is now just trying to live the best life he can, getting ketamine treatments and just trying to keep the pain down.
I spoke with another lady named who is being taken care of by her 80 year-old parents who was living a productive life and just through the smallest of episodes, her life is now turned upside down. She recently had to move from south Florida to central Florida just to be close to treatment, so they had to sell their house and relocate. It’s very sad stories but people are dynamic and still fighting. At times, they give me hope because I wonder how someone going through so much can still be so positive and still keep smiling.
What has been the feedback of Trial By Fire?
Unbelievable. It’s been unbelievable. I think for people who have CRPS, for them this is real life. The film is very real. There are light moments but we tell a story that these people deal with every day. So, even if people have some hope and get some treatment and the treatment puts them in remission for a short period of time, it’s actually only a short period of time. And they also have their lives that are upside down now. Many have lost work, don’t work, have hard times with loved ones and have hard times finding support.
I think people are literally blown away and, from what I understand, many in tears and blown away from the truth and the reality of the film. It’s a very gripping film. For 54 minutes, it keeps you glued, wanting to know more, wanting to understand more or understand that this is your story. I had one girl say, “Thank you, Charles,” because her husband or fiancé maybe didn’t get it but I think he gets it now after the film. There was also another young girl who was there who I think her father didn’t get it or didn’t understand the severity of it. And now because of this, he was able to understand really what his daughter was going through because it’s hard to understand pain, especially when it’s someone else.
Is there something that people can do to help advocates and patients with CRPS?
I think the best thing they should do is learn about what CRPS is and learn about some of the symptoms. And if you are a caregiver, support is so key because you have to learn how to be a good support system and understand they are going through tremendous pain, mentally, physically and emotionally.
There’s a young girl, about 26 years-old and she was working in Manhattan, got injured on the job, now had to move back home to Florida to live with her parents where she’s not getting any income. She can’t work. She can’t drive. She’s in tremendous pain. You could imagine how heartbreaking that could be for someone. And, if you don’t have support or the correct support, you don’t want to be mentally abused or told something that could put you in a worse situation because you’re already requiring someone’s assistance for life. Being a real positive support role model for whoever you’re dealing with is very key because they’re in a vulnerable situation. So learning about the disease, being able to do the research, talk to the doctors, get information, work hand-in-hand, find a good doctor. That’s also key. I’ve seen several stories where even with Hannah, it took her 10 years to find one good doctor and a lot of people thought they were crazy and it was all in their head. A lot of these doctors actually did more harm than good mentally to some of these people. So making sure that you become active in their lives and in their medical life.
Where can people see Trial by Fire?
Right now we’re in film festivals. Then after that, we are in talks with many major distribution companies. So once we finish the film festival run and win some awards and we are doing some select screenings across the country. We just had one in Florida. We have another one coming up in Texas and then another one possibly in New York. But then we will be seen around the world very shortly in the next few months.
Is there anything else I should know about CRPS or Trial by Fire?
Trial by Fire is not just a movie. It’s a movement and that’s really what I wanted to do here. I didn’t just want to create a film. We have engaged thousands of people with CRPS and allowed them to be active in the promotion of the film. So we encourage them to tweet. We encourage them to Facebook. We encourage them to comment on stories. We encourage them to share. We encourage them to tell their friends.
I look at the ALS movement, I look at other movements and that’s what we want to create. I think what CRPS needed was a shot in the arm and it needed a voice, and Trial by Fire is more of a voice and a shot in the arm and also a sounding board for positivity and change because this film needs to be out so doctors can know more about what CRPS is. Because most doctors don’t know what CRPS is. You can imagine if you’re in, let’s say, Jamaica, how many cases of CRPS in Jamaica that will never be diagnosed because if doctors in America don’t know about it, you can imagine what’s in Africa, or in India, or in the Islands. So this needs to be seen so that we can educate doctors themselves so that they can diagnose these patients correctly and get them the treatment that they need, so that it may not get to a point where it’s something that could take their life. This is called the ‘suicide disease.’ It won’t kill you but it will make you wish you were dead.
Marie McGowin
Patient Advocate
CRPS Partners In Pain, Inc.
Sunday, January 17, 2016
Trial By Fire
Friday January 15, 2016 Trial By Fire made its red carpet premiere in Tampa. Invited were people who were featured in the film. Trial By Fire is a documentary film about CRPS. Charles Mattocks (created and producer) has personal experience with CRPS. His beloved mother has CRPS. Charles set out to tell her story and the stories of others with CRPS.
Some of the recent press about the film:
http://linkis.com/selfdiscoveryradio.com/ZCOyc
http://www.huffingtonpost.com/bryan-cainjackson/a-pain-that-few-know_b_8975800.html
I am honored to be a part of this story that will bring CRPS into the limelight. The film, as of today, is entered in three film festivals in NYC, Miami and Hollywood FL. This is just the start. We need everyone in the CRPS community to rally together and promote this film. It does matter if you were involved in the filming or not. We need to all cut out this petty infighting and rally around Charles Mattocks and Trial By Fire!!
CRPS Partners In Pain, Inc is wiling to work together with any individual or organization to get the word out. We need a voice and Trial By Fire is giving us a voice. WE WILL BE HEARD!!
Some of the recent press about the film:
http://linkis.com/selfdiscoveryradio.com/ZCOyc
http://www.huffingtonpost.com/bryan-cainjackson/a-pain-that-few-know_b_8975800.html
I am honored to be a part of this story that will bring CRPS into the limelight. The film, as of today, is entered in three film festivals in NYC, Miami and Hollywood FL. This is just the start. We need everyone in the CRPS community to rally together and promote this film. It does matter if you were involved in the filming or not. We need to all cut out this petty infighting and rally around Charles Mattocks and Trial By Fire!!
CRPS Partners In Pain, Inc is wiling to work together with any individual or organization to get the word out. We need a voice and Trial By Fire is giving us a voice. WE WILL BE HEARD!!
Saturday, December 26, 2015
Trial By Fire
Charles Mattocks creation; Trial By Fire a documentary on CRPS is complete. The first screening will be announced soon. In order to follow the film go to the trailer on YouTube
https://www.youtube.com/watch?v=aIB3V1BKaI8
on Facebook: Trial By Fire
on Twitter: Charles Mattocks
This has been a labor of love for Charles. His mom has CRPS. He has spent months interviewing, researching and filming people suffering with CRPS. The final editing is done and now the work of getting into film festivals and on TV is next. Please keep a look out for additional information on this amazing film.
https://www.youtube.com/watch?v=aIB3V1BKaI8
on Facebook: Trial By Fire
on Twitter: Charles Mattocks
This has been a labor of love for Charles. His mom has CRPS. He has spent months interviewing, researching and filming people suffering with CRPS. The final editing is done and now the work of getting into film festivals and on TV is next. Please keep a look out for additional information on this amazing film.
Saturday, October 24, 2015
Anniversary Of My First Ketamine
Fourteen years ago I had my first ketamine infusion. In October of 2001, I flew to Germany to be the fifth American to receive a ketamine induced drug coma. Here is my story.
In August of 2001, I was asked if I would like to participate in a study of ketamine on CRPS. At that time, it was hoped that this ketamine coma would be the cure for CRPS. My oldest daughter was in college and my youngest daughter a senior in high school. As a nurse, I knew the risks of a drug induced coma. There were potential complications related to bedrest such as blood clots and muscle waisting. There were the risks of infection from the foley catheter (drains urine), the central line, the endotracheal tube (goes into your lungs to attach to a ventilator) and the arterial line. There was the risk that it would not work. Unlike most studies where the cost of treatment was covered; we would be responsible for air travel, hotel costs, meals and the cost of the treatment which involved 10 days in the ICU.
What should I do? Do I give up the chance for a potential cure? Do I take the risk of leaving my daughters motherless? It was not an easy decision but ultimately I thought that the potential benefit outweighed the risk.
A family member had to be with you. My husband stayed home with my daughter. My father (who had ALS) volunteered to go into a nursing home for two weeks so that my mom could accompany me to Germany. Days before we were scheduled to leave, I began to freak out. I was not sure that I had made the right decision. Fortunately all did go well.
My mom and I flew to Frankfort Germany where my father's twin (my uncle) met us. My father and uncle were born in Germany and spent their first 11 years there. My uncle came to stay by my mom's side while I was in the coma. He drove us to Saarbruken where the treatment would take place and drove my mom to and from the hospital when she was permitted to see me. He was a lifesaver as I didn't have to worry about my mom as I was about to undergo this treatment.
It is not easy to put your life in the hands of physicians that you have only known for hours. The night before I was going to be put into the ketamine coma, I had dinner with the physicians conducting the test and the other American patient of Dr Schwartzman's. Ironically her name was Nancy as well. Additionally, she had been a medical student at Drexel when I was a patient there. We are pretty sure she was assigned to me. The next morning, IVs were started and off to sleep Nancy and I drifted. The ketamine coma protocol was evolving. The previous 4 patients were not given versed and ativan. They were psychotic until the ketamine was out of their system following their ketamine coma. We were the first two to receive these supportive medications. I was the first to be intubated because of my severe reflux. The "other Nancy" ended up also being intubated. Going forward this was part of the care plan.
In addition to being intubated, I had a foley catheter to drain urine, an arterial line so that arterial blood could be drawn to check my oxygenation, and pH. Blood pressure readings were done through the arterial line. I had a central line as well. PT came in and did passive range of motion to prevent some of the risks of immobility. I was given the ketamine for 6 days. It took about 24 hours for me to wake up afterwards. I did not have hallucinations. I did have some vivid dreams. Before they put me under; I had good thoughts about my daughters. I had good dreams about them.
I had some PT after the coma. I was very weak. At that time, I was pain free. The next six weeks would be the only time since my accident in 1996 that I have been pain free. At that time, I was taken off of all of my CRPS medications before traveling to Germany (except for my Medtronic Pump which was in the process of being weaned). There was no follow up ketamine protocol in the US. December 26th, 2001 the burning pain returned. I was devastated. I called Dr Schwartzman and he prescribed all of the medications that I had been on before ketamine.
Two weeks after my mom and I returned home, my father died from his ALS. He had made the ultimate sacrifice by spending 2 of his last 4 weeks in a nursing home so that I could receive this groundbreaking treatment. As far as he knew, my pain was gone and I was cured.
My ketamine roomy also had a return of her CRPS pain. She had been a surgical resident at Cooper Hospital in Camden. Nancy knew the head of anesthesia, Dr Michael Goldberg at Cooper. By February of 2002, thanks to Nancy's contacts, Nancy and I were receiving ketamine in the pre-op area of Cooper. Drs Goldberg and Schwartzman had to figure out an outpatient protocol. Over the next year, they tried a variety of dosages and frequency of infusions. Of course, I needed someone to take me to and from these infusions. I lived about an hour from Cooper at the time. My uncle came to the rescue. My Uncle Jack was retired. He drove to my house (30 min) to pick me up and then drove me to Cooper. He waited 6 hours as IVs were started, infusions started, a 4 hour infusion and time to recoup. His sacrifice of his time was amazing. One day that I was not receiving treatment, he fell down the stairs at home and broke his neck. The tables were turned and I was the one to drive to Jefferson and be sure that he was well taken care of. My ketamine infusions were put on hold.
It wasn't until 2003 that Dr Schwartzman got ketamine infusions approved at Hahnemann. I did inpatient infusions there about every 6 months. He also had an outpatient ketamine program. With all of these protocols put in place, in January of 2004, I returned to Germany for a second ketamine inducted coma. This time my husband went with me. The results were not as successful the second time. I did get CRPS pain relief for about a couple of weeks, but the arthritic and orthopedic pain in my foot remained. During this coma infusion they added Fentanyl to the mixture of medications given. They felt that I needed to be on an opioid to keep the non-CRPS pain in my foot calm. It was felt that it was this other pain in my foot that was fueling my CRPS pain. We now know that opioids cause inflammation which works against the ketamine. I was living proof of this.
Fourteen years later, although ketamine is not the cure that they hoped it would be, it is still the best treatment that there is out there for CRPS. Many of us still have to pay out of pocket for this treatment. Insurance Co's do not reimburse physicians enough to cover the costs of most physicians. Medicare covers Ketamine but other insurance companies do not. I still get regular ketamine infusions. Some worry about the long term affects of ketamine. Prior to going to Germany, I had a MRI and cognitive testing. In 2010, I had these tests repeated. There was no change in the MRI or cognitive abilities. Studies in Australia go back 40 years. They use ketamine for other conditions and their study shows no long term negative effects. Studies that do show negative effects were done on people who abuse ketamine and other drugs. Prescribed dosages of ketamine have not been linked to long term negative effects. There are long term negative effects of chronic pain.
I was fortunate to get in on the ground floor of ketamine infusions for CRPS. Now, I am the Executive Director of CRPS Partners In Pain Inc. We provide financial assistance to those who qualify so that they too can get ketamine infusions as pain management for their CRPS.
In August of 2001, I was asked if I would like to participate in a study of ketamine on CRPS. At that time, it was hoped that this ketamine coma would be the cure for CRPS. My oldest daughter was in college and my youngest daughter a senior in high school. As a nurse, I knew the risks of a drug induced coma. There were potential complications related to bedrest such as blood clots and muscle waisting. There were the risks of infection from the foley catheter (drains urine), the central line, the endotracheal tube (goes into your lungs to attach to a ventilator) and the arterial line. There was the risk that it would not work. Unlike most studies where the cost of treatment was covered; we would be responsible for air travel, hotel costs, meals and the cost of the treatment which involved 10 days in the ICU.
What should I do? Do I give up the chance for a potential cure? Do I take the risk of leaving my daughters motherless? It was not an easy decision but ultimately I thought that the potential benefit outweighed the risk.
A family member had to be with you. My husband stayed home with my daughter. My father (who had ALS) volunteered to go into a nursing home for two weeks so that my mom could accompany me to Germany. Days before we were scheduled to leave, I began to freak out. I was not sure that I had made the right decision. Fortunately all did go well.
My mom and I flew to Frankfort Germany where my father's twin (my uncle) met us. My father and uncle were born in Germany and spent their first 11 years there. My uncle came to stay by my mom's side while I was in the coma. He drove us to Saarbruken where the treatment would take place and drove my mom to and from the hospital when she was permitted to see me. He was a lifesaver as I didn't have to worry about my mom as I was about to undergo this treatment.
It is not easy to put your life in the hands of physicians that you have only known for hours. The night before I was going to be put into the ketamine coma, I had dinner with the physicians conducting the test and the other American patient of Dr Schwartzman's. Ironically her name was Nancy as well. Additionally, she had been a medical student at Drexel when I was a patient there. We are pretty sure she was assigned to me. The next morning, IVs were started and off to sleep Nancy and I drifted. The ketamine coma protocol was evolving. The previous 4 patients were not given versed and ativan. They were psychotic until the ketamine was out of their system following their ketamine coma. We were the first two to receive these supportive medications. I was the first to be intubated because of my severe reflux. The "other Nancy" ended up also being intubated. Going forward this was part of the care plan.
In addition to being intubated, I had a foley catheter to drain urine, an arterial line so that arterial blood could be drawn to check my oxygenation, and pH. Blood pressure readings were done through the arterial line. I had a central line as well. PT came in and did passive range of motion to prevent some of the risks of immobility. I was given the ketamine for 6 days. It took about 24 hours for me to wake up afterwards. I did not have hallucinations. I did have some vivid dreams. Before they put me under; I had good thoughts about my daughters. I had good dreams about them.
I had some PT after the coma. I was very weak. At that time, I was pain free. The next six weeks would be the only time since my accident in 1996 that I have been pain free. At that time, I was taken off of all of my CRPS medications before traveling to Germany (except for my Medtronic Pump which was in the process of being weaned). There was no follow up ketamine protocol in the US. December 26th, 2001 the burning pain returned. I was devastated. I called Dr Schwartzman and he prescribed all of the medications that I had been on before ketamine.
Two weeks after my mom and I returned home, my father died from his ALS. He had made the ultimate sacrifice by spending 2 of his last 4 weeks in a nursing home so that I could receive this groundbreaking treatment. As far as he knew, my pain was gone and I was cured.
My ketamine roomy also had a return of her CRPS pain. She had been a surgical resident at Cooper Hospital in Camden. Nancy knew the head of anesthesia, Dr Michael Goldberg at Cooper. By February of 2002, thanks to Nancy's contacts, Nancy and I were receiving ketamine in the pre-op area of Cooper. Drs Goldberg and Schwartzman had to figure out an outpatient protocol. Over the next year, they tried a variety of dosages and frequency of infusions. Of course, I needed someone to take me to and from these infusions. I lived about an hour from Cooper at the time. My uncle came to the rescue. My Uncle Jack was retired. He drove to my house (30 min) to pick me up and then drove me to Cooper. He waited 6 hours as IVs were started, infusions started, a 4 hour infusion and time to recoup. His sacrifice of his time was amazing. One day that I was not receiving treatment, he fell down the stairs at home and broke his neck. The tables were turned and I was the one to drive to Jefferson and be sure that he was well taken care of. My ketamine infusions were put on hold.
It wasn't until 2003 that Dr Schwartzman got ketamine infusions approved at Hahnemann. I did inpatient infusions there about every 6 months. He also had an outpatient ketamine program. With all of these protocols put in place, in January of 2004, I returned to Germany for a second ketamine inducted coma. This time my husband went with me. The results were not as successful the second time. I did get CRPS pain relief for about a couple of weeks, but the arthritic and orthopedic pain in my foot remained. During this coma infusion they added Fentanyl to the mixture of medications given. They felt that I needed to be on an opioid to keep the non-CRPS pain in my foot calm. It was felt that it was this other pain in my foot that was fueling my CRPS pain. We now know that opioids cause inflammation which works against the ketamine. I was living proof of this.
Fourteen years later, although ketamine is not the cure that they hoped it would be, it is still the best treatment that there is out there for CRPS. Many of us still have to pay out of pocket for this treatment. Insurance Co's do not reimburse physicians enough to cover the costs of most physicians. Medicare covers Ketamine but other insurance companies do not. I still get regular ketamine infusions. Some worry about the long term affects of ketamine. Prior to going to Germany, I had a MRI and cognitive testing. In 2010, I had these tests repeated. There was no change in the MRI or cognitive abilities. Studies in Australia go back 40 years. They use ketamine for other conditions and their study shows no long term negative effects. Studies that do show negative effects were done on people who abuse ketamine and other drugs. Prescribed dosages of ketamine have not been linked to long term negative effects. There are long term negative effects of chronic pain.
I was fortunate to get in on the ground floor of ketamine infusions for CRPS. Now, I am the Executive Director of CRPS Partners In Pain Inc. We provide financial assistance to those who qualify so that they too can get ketamine infusions as pain management for their CRPS.
Monday, May 18, 2015
CRPS Study
For the fist time in a long time, a clinical trial is taking place around the country. For more information go to www.studycrps/com for additional information
Documentary
Great news for those of us with CRPS!! Charles Mattocks is doing a documentary on CRPS. The link to his blog is:
http://www.caregivingcafe.com/blog/2015/05/trial-by-fire-caregiving-for-mother-with-crps-ignites-passion-for-world-advocacy/
I had the honor of having Charles come to my home to interview me and some friends with CRPS/Caregivers. As we all know, we desperately need to get information out there about CRPS that are true. Many doctors, nurses and patients do not have accurate information. This is our chance to get some attention paid to this monster we call CRPS.
http://www.caregivingcafe.com/blog/2015/05/trial-by-fire-caregiving-for-mother-with-crps-ignites-passion-for-world-advocacy/
I had the honor of having Charles come to my home to interview me and some friends with CRPS/Caregivers. As we all know, we desperately need to get information out there about CRPS that are true. Many doctors, nurses and patients do not have accurate information. This is our chance to get some attention paid to this monster we call CRPS.
Monday, October 20, 2014
I am a normal person
For the past few years, I have been a co-admin of a Facebook support group. I have this blog and I have written a book: CRPS/RSD Facts, Fiction and Feelings. I try to be accessible to the members of my support group but some how that doesn't come across. I find it very frustrating that I am viewed as inaccessible.
I can't get used to people knowing who I am when I have never met them. Two weeks ago, I was sitting with a friend who was getting ketamine at Florida Spine Institute in Clearwater FL. Crissy, one of their fantastic nurses, asked if I knew "Mary". I said that I did not. Crissy wanted to know if I would talk to her. Of course I said yes. Crissy checked with "Mary' to be sure that she was okay with it. "Mary" shouted out "I have her book!". We spoke for a while, I gave her a hug and went back to my friend. "Mary" started calling friends/family to tell them that she met me and I gave her a hug. I appreciate that she purchased my book as all royalties go to my non-profit CRPS Partners In Pain, Inc. It felt weird to me that someone would be excited to meet me.
I am just a normal person with CRPS who wants to use my nursing education to help others with this monster disease. CRPS Partners In Pain, Inc is my baby. The founding mothers saw a need to help those not getting treatment because of financial issues needed treatments. There are non-profits that promote CRPS Awareness (I whole heartedly support them) and non-profits supporting research. There was no one helping the educated getting the treatment that research has found helpful. This is why we started CRPS PIP.
I don't see anything special about what I am doing. I don't think of myself as inaccessible yet that seems to be the perception of others.
I can't get used to people knowing who I am when I have never met them. Two weeks ago, I was sitting with a friend who was getting ketamine at Florida Spine Institute in Clearwater FL. Crissy, one of their fantastic nurses, asked if I knew "Mary". I said that I did not. Crissy wanted to know if I would talk to her. Of course I said yes. Crissy checked with "Mary' to be sure that she was okay with it. "Mary" shouted out "I have her book!". We spoke for a while, I gave her a hug and went back to my friend. "Mary" started calling friends/family to tell them that she met me and I gave her a hug. I appreciate that she purchased my book as all royalties go to my non-profit CRPS Partners In Pain, Inc. It felt weird to me that someone would be excited to meet me.
I am just a normal person with CRPS who wants to use my nursing education to help others with this monster disease. CRPS Partners In Pain, Inc is my baby. The founding mothers saw a need to help those not getting treatment because of financial issues needed treatments. There are non-profits that promote CRPS Awareness (I whole heartedly support them) and non-profits supporting research. There was no one helping the educated getting the treatment that research has found helpful. This is why we started CRPS PIP.
I don't see anything special about what I am doing. I don't think of myself as inaccessible yet that seems to be the perception of others.
Memories
October, November and December hold a lot of memories from 2001. It was October 26th 2001 that I was put into a Ketamine Coma in Germany. At the time, we thought that this would cure CRPS. That was not the case. As of this post, ketamine coma is not available anywhere.
As a RN, I knew what the risks were of any drug induced coma: respiratory illness, infection, blood clots, etc. If I were presented with the opportunity to get ketamine coma treatment now; with the ketamine options available now that were not available then, I would not take the risk. We now know that ketamine is needed on an ongoing basis and that it is not a cure.
I arrived back in the US on Veteran's Day. My father, who was dying of ALS, went into a nursing home for two weeks, so that my mom could accompany me to Germany. The entire time that I was awake, I was concerned that we would get a call telling us that he was gone. It did not happen. November 26 2001, my father passed thinking that my CRPS was cured.
December 14 was my father's birthday. All special events are difficult once you loose someone. This was particularly difficult as his birthday was just after his death.
As a RN, I knew what the risks were of any drug induced coma: respiratory illness, infection, blood clots, etc. If I were presented with the opportunity to get ketamine coma treatment now; with the ketamine options available now that were not available then, I would not take the risk. We now know that ketamine is needed on an ongoing basis and that it is not a cure.
I arrived back in the US on Veteran's Day. My father, who was dying of ALS, went into a nursing home for two weeks, so that my mom could accompany me to Germany. The entire time that I was awake, I was concerned that we would get a call telling us that he was gone. It did not happen. November 26 2001, my father passed thinking that my CRPS was cured.
December 14 was my father's birthday. All special events are difficult once you loose someone. This was particularly difficult as his birthday was just after his death.
Monday, September 1, 2014
SEPTEMBER IS PAIN AWARENESS MONTH
Today, September 1, 2014 is the start of Pain Awareness Month. Most people are unaware that chronic pain is a diagnosis of it's own. Doctors blame the pain on depression; however, in most cases it is pain that causes depression.
The most common type of chronic pain is the migraine.
From www.migraines.com
Migraine is a headache with pain that can last from 4 hours to 3 days.2
The most common type of chronic pain is the migraine.
From www.migraines.com
Migraine is a headache with pain that can last from 4 hours to 3 days.2
- Pain is usually moderately to severely intense, pulsating, and often occurring on 1 side of the head
- Telltale signs of migraine may be nausea and/or vomiting, and sensitivity to light and sound
- Changes in vision or hearing, called aura, may come just before or just as the migraine begins2
- One type of migraine occurs with fewer than 15 headache days per month, some of them being migraine. This is called episodic migraine
- The second type is when headaches occur 15 or more days per month with headache lasting 4 hours or longer for at least 3 months, some being migraine. This is calledChronic Migraine2-4
Sunday, June 15, 2014
How do you do........?
I am often asked how I can do so many things with full body CRPS? How do I go to Orlando attractions with my husband Jim or travel to DC to see my grandson? I was 38 when I was injured. My girls were 11 and 13 years old. I made a decision way back then that I could sit at home and not participate in family activities or I could swallow my pride and use a wheelchair. I walk within the house but when we go out anywhere, it is done in a wheelchair.
To prevent atrophy due to non-use, I ride an exercise bike daily. This is non-weight baring but it helps keep my muscles strong and increases blood flow to my foot. I've tried weight baring exercise which is better for you but my foot can not tolerate that. The crush fractures of my foot and subsequent fusion surgery are what caused my CRPS. The orthopedic injury was bad enough to have disabled me even if I never got CRPS.
This is not always easy. Sometimes, like everyone else, I over do it and pay big time for it. Other times there is something that I really want to do but it isn't feasible even in a wheelchair.
I choose what activities are important to me. I can't do everything and if I try I will end up not being able to do anything. When my children were young; I asked them; what event that you have this week or this month is most important to have me attend? I made sure that I had rest days before and after those important activities that they wanted me to watch.
My husband likes to plan surprises. He gives me dates to reserve. Again I plan days before and after to rest. He knows my limitations. We use the wheelchair. If I can't do everything that he has planned; we just skip it. When we are away, we go out in the morning to do things and spend the afternoons in the hotel/timeshare so that I can rest before we go out to dinner.
I know that some have injuries that a wheel chair won't help. When I had my back injury; I could not sit in a wheel chair. I was only comfortable when I was flat on my back. That year between the injury and surgery; we did very little. I get it that not everyone has something like a wheelchair that will allow them to get out and do things that they enjoy.
With ketamine infusions, I am also able to do more things. The LDN reduces the frequency, severity and duration of my flares. I still get them. Earlier this month I had the worst flare that I had had in 10 years. Why? Because my adrenals decided to stop functioning and my May ketamine did not help. It is a huge emotional set back when something new crops up. We have figured ways to deal with our main health issues. When a new one pops up, we feel defeated. Instead we need to try to stay positive, to look for answers as to what is going on with this new symptom and not automatically assume that it is CRPS related. Not everything that happens to us is CRPS related even though it feels like it is.
I try my best to keep a positive attitude. That is not always possible but I have always been a glass half full person and have tried not to let CRPS change that.
To prevent atrophy due to non-use, I ride an exercise bike daily. This is non-weight baring but it helps keep my muscles strong and increases blood flow to my foot. I've tried weight baring exercise which is better for you but my foot can not tolerate that. The crush fractures of my foot and subsequent fusion surgery are what caused my CRPS. The orthopedic injury was bad enough to have disabled me even if I never got CRPS.
This is not always easy. Sometimes, like everyone else, I over do it and pay big time for it. Other times there is something that I really want to do but it isn't feasible even in a wheelchair.
I choose what activities are important to me. I can't do everything and if I try I will end up not being able to do anything. When my children were young; I asked them; what event that you have this week or this month is most important to have me attend? I made sure that I had rest days before and after those important activities that they wanted me to watch.
My husband likes to plan surprises. He gives me dates to reserve. Again I plan days before and after to rest. He knows my limitations. We use the wheelchair. If I can't do everything that he has planned; we just skip it. When we are away, we go out in the morning to do things and spend the afternoons in the hotel/timeshare so that I can rest before we go out to dinner.
I know that some have injuries that a wheel chair won't help. When I had my back injury; I could not sit in a wheel chair. I was only comfortable when I was flat on my back. That year between the injury and surgery; we did very little. I get it that not everyone has something like a wheelchair that will allow them to get out and do things that they enjoy.
With ketamine infusions, I am also able to do more things. The LDN reduces the frequency, severity and duration of my flares. I still get them. Earlier this month I had the worst flare that I had had in 10 years. Why? Because my adrenals decided to stop functioning and my May ketamine did not help. It is a huge emotional set back when something new crops up. We have figured ways to deal with our main health issues. When a new one pops up, we feel defeated. Instead we need to try to stay positive, to look for answers as to what is going on with this new symptom and not automatically assume that it is CRPS related. Not everything that happens to us is CRPS related even though it feels like it is.
I try my best to keep a positive attitude. That is not always possible but I have always been a glass half full person and have tried not to let CRPS change that.
Wednesday, April 16, 2014
Tough Time
I have encountered a new health problem. My adrenal glans are not producing normal amounts of cortisol. Lately I have had no energy and an increase in pain in areas where I didn't have pain before. My doctor suggested a saliva test. It showed that I am not producing cortisol.
I have been trying to push through this but it is very difficult. Some times this disease can be overwhelming. It seems that every time you think that you have established a new norm, something new pops up. I am trying not to let it drag me down. It is a tough fight.
We also lost another CRPS Warrior last week. I met Lisa and her partner at our CRPS PIP symposium last November. It is so sad to loose such a vibrant person. I always wonder if there was something more that I could have done to get help for her.
I am trying to eat a healthier diet and have added resistance to my exercise bike. It is really difficult to get motivated to ride it but I have making it a priority. I have given up diet drinks. I am trying not to eat processed foods. We are getting organic fruits and veggies. I even got Jim to buy free range chicken.
I have been trying to push through this but it is very difficult. Some times this disease can be overwhelming. It seems that every time you think that you have established a new norm, something new pops up. I am trying not to let it drag me down. It is a tough fight.
We also lost another CRPS Warrior last week. I met Lisa and her partner at our CRPS PIP symposium last November. It is so sad to loose such a vibrant person. I always wonder if there was something more that I could have done to get help for her.
I am trying to eat a healthier diet and have added resistance to my exercise bike. It is really difficult to get motivated to ride it but I have making it a priority. I have given up diet drinks. I am trying not to eat processed foods. We are getting organic fruits and veggies. I even got Jim to buy free range chicken.
Thursday, March 27, 2014
Justice For Justina
Recently I learned of a teenaged girl who is in the middle of a custody battle. The battle is not between her parents but between Boston's Children's Hospital and her parents. Justina and her family live in CT. She was diagnosed at Tuffs University Hospital with a rare genetic syndrome. Justina's parents took her to Boston Children's Hospital for treatment. In February of 2013 DCF of Mass took custody of Justina. . Justina's parents took her to Boston Children's Hospital for treatment. Instead doctors there over ruled Tuff's diagnosis and diagnosed Justina with a psychiatric disorder. She was locked up in the psychiatric unit in spite of the fact that she was there to be treated for this genetic disorder.
This tuesday, the judge awarded permanent custody to DCF of Mass. In his four page decision, Judge Johnson faulted the CT's child protective agency for it's failure to get involved. He wrote that Justina's parents of having haphazard decision making regarding their daughter's care.
How would you react if your 15 year old daughter was diagnosed with a rare genetic syndrome? You would seek treatment. That is exactly what Justina's parents did when going to Boston's Children's Hospital. How would you feel if your daughter was diagnosed as having a psychiatric illness rather than a physical illness? As someone with CRPS, I have heard over and over again that my CRPS is all in my head or there is no such thing as CRPS. I was angry.
If my teen had a rare illness and was then told that her symptoms were made up; I too would be furious. How would you feel of your child was taken from you and given to DCF and locked in a psych unit getting no medical treatment? How would you feel if your daughter went a year without a court appointment advocate (Gardian ad Litem or GAL)? I know that I would be furious. I would do everything in my power to fight to get my daughter back to Tuffs and get treatment for her medical condition. This is exactly what Justina's parents are doing.
How can you help?
Learn more about this case
www.bostonglobe.com/lifestyle/health-wellness/2014/permanent-custody-justina-pelletier-awarded-state-massachusetts/puyPhesGkKE6GLid2VM2L/story,html
Go to www.justiceforjustina.com
Sign a petition:
https://petitions.whitehouse.gov/petition/we-petition-doj-criminal-investitation-boston-chidrens-and-massachusetts-dcf-abusing-justina/jgdThjc
I can not understand why DCF of Mass sees it as their duty to take custody of Justina when her home state Conn and Tuffs University Hospital do not see this situation as child abuse. What gives Mass the right to limit contact between Justina and her parents. To have supervised visits fearing that her parents would discuss things that DCF deems inappropriate.
Help Justina get the medical treatment that she needs and has been suspended for over 13 months. Get involved. This could just as well be your teenaged child.
Thank you Sue Pinkham for bringing this to my attention. As a former pediatric nurse and as a GAL in FL; this situation infuriates me. We all need to help Justina get the treatment that she needs and reunite her with her parents.
This tuesday, the judge awarded permanent custody to DCF of Mass. In his four page decision, Judge Johnson faulted the CT's child protective agency for it's failure to get involved. He wrote that Justina's parents of having haphazard decision making regarding their daughter's care.
How would you react if your 15 year old daughter was diagnosed with a rare genetic syndrome? You would seek treatment. That is exactly what Justina's parents did when going to Boston's Children's Hospital. How would you feel if your daughter was diagnosed as having a psychiatric illness rather than a physical illness? As someone with CRPS, I have heard over and over again that my CRPS is all in my head or there is no such thing as CRPS. I was angry.
If my teen had a rare illness and was then told that her symptoms were made up; I too would be furious. How would you feel of your child was taken from you and given to DCF and locked in a psych unit getting no medical treatment? How would you feel if your daughter went a year without a court appointment advocate (Gardian ad Litem or GAL)? I know that I would be furious. I would do everything in my power to fight to get my daughter back to Tuffs and get treatment for her medical condition. This is exactly what Justina's parents are doing.
How can you help?
Learn more about this case
www.bostonglobe.com/lifestyle/health-wellness/2014/permanent-custody-justina-pelletier-awarded-state-massachusetts/puyPhesGkKE6GLid2VM2L/story,html
Go to www.justiceforjustina.com
Sign a petition:
https://petitions.whitehouse.gov/petition/we-petition-doj-criminal-investitation-boston-chidrens-and-massachusetts-dcf-abusing-justina/jgdThjc
I can not understand why DCF of Mass sees it as their duty to take custody of Justina when her home state Conn and Tuffs University Hospital do not see this situation as child abuse. What gives Mass the right to limit contact between Justina and her parents. To have supervised visits fearing that her parents would discuss things that DCF deems inappropriate.
Help Justina get the medical treatment that she needs and has been suspended for over 13 months. Get involved. This could just as well be your teenaged child.
Thank you Sue Pinkham for bringing this to my attention. As a former pediatric nurse and as a GAL in FL; this situation infuriates me. We all need to help Justina get the treatment that she needs and reunite her with her parents.
Friday, March 21, 2014
Wednesday, March 12, 2014
First Birthday
A year ago at 8:25 p.m. the most amazing person came in to this world. Although his birth was not what we anticipated, he could't have been loved more. I have watched Kim and Bennett evolve from a couple to a family. At first Kim would ask Ian if he wanted to go to Bennett. As the days passed, Bennett was daddy and Kim was mommy. The normal sleepless nights have been handled with grace. There couldn't be any two people more dedicated to being sure that Ian is a healthy happy baby.
This year went by so quickly. I go back and forth from Orlando being a wife to DC where I am grammy. It is so rewarding seeing that big smile and his face light up when I come to visit. Being a grammy with CRPS has it's challenges. Challenges and all, it has been a great year as Ian's grammy
This year went by so quickly. I go back and forth from Orlando being a wife to DC where I am grammy. It is so rewarding seeing that big smile and his face light up when I come to visit. Being a grammy with CRPS has it's challenges. Challenges and all, it has been a great year as Ian's grammy
Sad Day
Yesterday I resigned from Ketamine Klub. There was too much stress and bullying. K Klub has gotten too crazy with people worrying about who is friends with whom. Although I will miss my friends in K Klub; I can no longer be involved. This has me sand and depressed.
Friday, February 28, 2014
Annniversaries
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.
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 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)
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