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

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

Peace

The holidays are upon us.  To me, Christmas it a time of love, hope and peace.  I would love to see this happen in the Chronic Pain Community.  There are several great organizations helping those with Chronic Pain (not just CRPS).  I would love to see us work in harmony and share our expertise.  Alas, I guess that I am too much of an idealist as in the real world, this just hasn't been possible.  It is a shame.

A COMPELLING STORY TO CELEBRATE INTERNATIONAL CRPS/RSD AWARENESS MONTH

Tiffany's RSD Treatment Fund:  https://www.giveforward.com/fundraiser/4r93/tiffany-s-rsd-treatment-fund

Dear Nancy, 

My name is Tiffany Turner and I am 31 years old. I am the mother of one adorably brilliant and spirited two and a half year old daughter, Penelope and the wife of a talented and loving engineer, Eric. We live in Phoenix Arizona. My story is a bit long, but beautiful and transformative. Three years ago our lives were changed forever and will never be quite the same again. 

May 8^th 2011 was Mother’s Day, and I had spent the day doing what I had done for the past three Mother’s Days- volunteering at a local women’s shelter in a rather underprivileged area of Phoenix making over disadvantaged mothers and children so they and their families could have a professional family portrait taken. For many of them, it was the only family portrait they ever had. This Mother’s Day was particularly special for me- I myself was 8 months pregnant with my first child- a baby girl- and with the new life growing inside of me I was thrilled at the prospect that every Mother’s Day to come I would have my own daughter to celebrate with. Little did I know that in less than 24 hours the hope of that reality would be challenged. Eric bought me this red dress and locket for Mother’s Day that year. 

        

When police and medics arrived on the scene, they had to cut me from my seat belt, and immediately noticed I was extremely pregnant. My large belly was  crushed following day I was driving to a routine checkup after work. Rush hour traffic was starting, and I could see traffic in front of me beginning to slow to a stop. As I stopped, I looked into my rear view mirror and saw the truck behind me was not stopping. I was driving a small Honda Coupe; he was driving a large crew cab truck.  He hit me at 50+ miles per hour- my small car was crushed in between his truck and the truck in front of me. I later learned he was either texting or talking on his phone. He was cited and given a small fine. 

When police and medics arrived on the scene, they had to cut me from my seat belt, and immediately noticed I was extremely pregnant. My large belly was crushed into the steering wheel. They were asking me questions about the baby’s movement, if I could feel parts of my body- arms, legs, etc. Much of what happened was a blur, but I was pulled from the car and laid out on a stretcher, loaded into the ambulance and taken to the nearest trauma center. 

Being involved in a bad car accident that far into a pregnancy, the trauma unit was prepared to handle whatever situation both I and my unborn daughter were in at the time of arrival. My clothing was cut off, I was hooked up to fetal monitors, IVs were started- there were more doctors and nurses than could barely fit into the room. And in walked my husband…to see his pregnant wife, naked on a table, surrounded by doctors. I calmly greeted him, and much to the surprise of the medical team, I reassured him that everything would be okay. My daughter was starting to move and her heartbeat was gaining. She was reacting to the sound of his voice in the room. I would not need an emergency C-section, but my spine had been damaged. Very badly. 

Over the next month, I gave up on my plans for a natural birth. I had to change OB’s because I would need a cesarean and a specialized anesthesiologist and surgeon to accommodate the nerve and spine damage that had been done as a result of the accident. I mourned the loss of my “birth plan”, but a happy and healthy baby was what I wanted more than anything in the world. And so it goes. 

I also learned that shortly after her birth I would need to undergo surgery to correct for a completely herniated disc that was floating in my spinal column and causing severe pain and increased nerve damage. My daughter was born on July 14^th 2011 and was perfect in every regard. 

When my daughter was 6 weeks old, I went in for my first spine surgery. After this surgery, I was not able to lift my daughter for 10 weeks.  I went through months of physical therapy, while also continuing to work full time. One part of this story that I had not previously mentioned is during all of this, I was (and still am) supporting my husband through a PhD program. I was/am the primary financial support for our family, so without my income and my insurance, we could not have survived. I had to continue to work through the pain. When my husband was initially searching for PhD programs 2007, he chose Arizona State University, and therefore we left our family behind in Pennsylvania to start a new life in Arizona. 

On June 24^th our sweet Penelope suffered a series of severe febrile seizures that lasted nearly thirty minutes. We almost lost her that night. We spent the next week sleeping next to her crib in the intensive care unit and she made a remarkable recovery, but it was a terrible experience for any parent to go through. 

The stress was too hard on my already fragile spine and body, and less than a week later on July 2^nd 2012 I suddenly became paralyzed in my left leg. An MRI showed the initial spine surgery I had the previous November had failed and the disc in my lumbar spine had re-herniated. I had to have emergency surgery if there was any hope of me walking again. My daughter would turn one in 12 days. I was 29 years old. After the surgery, my neurosurgeon felt confident he had fixed the problem, but the nerve damage I had suffered was likely irreversible. I would not regain feeling in most of my left leg or foot, but I would walk again. 

We celebrated my daughter’s first birthday with an Alice in “One”derland theme.  Two days later, I fell paralyzed once again. Another MRI, yet another failed surgery. This time, I would require a much more serious surgery, with more serious risks. A lumbar spinal fusion. The surgery was performed on July 26^th 2012 and I blew out the candles on my 30^th birthday cake from a hospital bed unable to walk. Or pick up my baby girl. Or sit up to receive a hug from my husband. 

But I was determined to walk and be the mom that I had wanted so desperately to be for all of that time. In October 2012 I returned to physical therapy…But something was not quite right. My left leg would turn purple or blue sometimes after sitting or walking, and then it would burn- as if someone were holding a flame to it. I couldn’t stand to have the lightest sheet touching me, or even water in the shower. I returned to the neurologist, who diagnosed me with Reflex Sympathetic Dystrophy, or Type II Complex Regional Pain Syndrome (CRPS). CRPS is a neuropathic pain disorder and autonomic nervous system condition. It is recognized by the medical community as the most painful disease in the world, with a McGill Pain Scale ranking of 42. The pain, burning and external signs of the disease (color change, edema, and open sores) can spread from limb to limb, and as I have since learned in this past year, it can systemically attack internal organs such as the heart, lungs, kidneys, digestive tract, and most importantly the brain. There is currently no cure for CRPS. 

To be 30 years old with a one year old child and staring down the barrel of this type of diagnosis was absolutely devastating. My team of doctors immediately started trying to slow the progression of the disease by using a myriad of powerful medications, invasive nerve blocks, physical therapy, etc. None of these approaches worked. With the added stress of continuing to work and financially support my family, I reached a breaking point. From January – July 2013 I suffered from Pneumonia four times. I was diagnosed with Addison’s Disease- a cortisol production insufficiency. I have severe tachycardia. All while continuing to work as the Comptroller of a large farm in the Phoenix area. But all I could do up until September of this year was go to work, come home, sleep, and go back to work. My marriage was failing…I rarely saw my sweet baby. But why up until September you might ask?

In September I found my “cure”. It came in the form of a long researched and well-studied treatment protocol in the CRPS community that many of my fellow sufferers have been getting for over a decade. It’s called ketamine infusion therapy. In the mid-1990s research trials began on this medication and its uses on patients with “stubborn” CRPS. The results were astounding- over 80% found close to 90% pain relief. Insurance companies started paying for the treatments in the mid 2000’s. The drug itself is extremely cheap, but the method of administration and the fact that patients need to be monitored closely is what is expensive. 

My insurance company, Cigna, has recently denied my claims, despite approving this procedure for other patients like me. Medicare, Medicaid, Blue Cross Blue Shield, United, Aetna- they are all paying for this life saving procedure.  Not only has Cigna denied it once, they have denied it three times. I had to liquidate my 401(k) - all of our savings- to put a down payment on this treatment that has saved my life. My parents have also given all they can, but my dad suffers from Parkinson’s Disease and my younger sister who is 17 is about to start college next fall, and it is not fair to take from her college fund, although she has generously opted to delay starting to help pay for my medical bills.

 I have set up a fundraiser, but I just cannot get the word spread without more help. So far, I have only been able to raise $2,500 of my $30,000 goal on my own. My husband and I have reached a point of emotional and financial desperation.  With no family here in Arizona, all of the care for my daughter and I has fallen onto the shoulders of my husband. 

This is why I am reaching out to you.  Before my inpatient ketamine transfusions, my outlook was bleak. Afterwards, I have slowly been able to come off of my pain medications, be more active in my daughter’s life, and have a renewed outlook on life. November is RSD/CRPS Awareness month. 

 I desperately need the help of other spiritual warriors, truth tellers, and hope spreaders in our community to raise awareness and funds to pay for my treatments and help cover some of the costs our family have incurred to maintain our household expenses. 

Thank you for taking the time to read my story. I give permission to make my story and all correspondence public. 

Sincerely, 

Tiffany Turner,

CRPS Awareness

November is just a week away.  In addition to my daily facts/fiction related to CRPS, my non-profit CRPS Partners In Pain, Inc. is holding an Awareness Symposium on November 16, 2013 at Drexel University New College Building, Philadelphia PA

The presenters are:

Dr Pradeep Chopra, MD

Dr Chopra is a professor at Brown Medical School in addition to being director of a pain management center in RI

Dr Guillermo (Bill) Alexander, PhD

Dr Alexander worked closely with Dr Robert J Schwartzman for years developing clinical trials and research.  He is a professor at Drexel Medical School.

Nancy Renée Cotterman, RN

Nancy has had CRPS for over 17 years, has published a book on CRPS called CRPS Facts, Fiction and Feelings and is a CRPS advocate

Jess Feinberg

Jess is a CRPS patient who has been in remission for 16 months.  She is back in school and studying to be a social worker.

Shirley Shea

Shirley's daughter Kaitlyn has had CRPS for 17 years.  Shirley will speak about the care taker role and the affect of CRPS on the family.

To Register go to:  www.crpspartnersinpain.com and click on Symposium.  Registration is $25

November 17th Meet and Greet

Sunday, we will be having a meet and greet fundraiser at Not Just Sandwiches in Warminster PA.  A portion of the proceeds will go to CRPS Partners In Pain, Inc.  We will also be raffling baskets and a Kindle Fire.

This is CRPS Partners In Pain, Inc's way of sharing CRPS Awareness.  I hope that you will join us.

CRPS Awareness

Yesterday, October 22, 2013 the TV show The Doctors did a segment on RSD.  Overall it was a good piece for what it was, but it could have been so much more.  The person highlighted in the piece has had CRPS for 10 years but for the most part was untreated.  This we all know is not unusual.  They explained how CRPS can spread which was good.  They implied by changing her diet to a non-inflammatory diet would get rid of her symptoms.  HBOT was offered for wounds that were not healing due to the extreme edema.  A prominent LA physician who treats CRPS was briefly shown.  He spoke about the importance of a multi-disaplined approach, which was good but he did not lay out all of the treatment options such as ketamine or lidocain infusions. I know that he treats with Ketamine so I wonder why it was not even mentioned.

Purely as an awareness piece introducing the general public about CRPS it was ok.  I would love to see them do a follow up piece with someone who as a patient, is more knowledgable about the treatment options.

November is CRPS/RSD Awareness Month

I will not be able to be on line for the first week of CRPS/RSD Awareness Month; there for, I will be posting 7 CRPS Facts or Fiction for the next 7 days both here and on Facebook.

1.  Fact or Fiction?
CRPS/RSD can not spread beyond the injured limb

Fiction.  Although many physicians are not aware that CRPS/RSD can spread in the limb on the other side or up one side; it can.  The internal organs can also be affected such as the GI Tract, vision and hearing.  If you are told by a medical professional that CRPS/RSD is either
1. all in your head
2. not able to spread
3. will burn itself out

Find another physician as CRPS is a physical illness that can lead to depression.  It is the physical injury that comes first not the depression.

CRPS does spread and I have never seen it burn itself out.

October is: National Breast Cancer Awareness Month, and Domestic Violence Awareness Month

Two members of my family have had breast cancer as well as several of my friends.  Those of us with CRPS tend to ignore routine preventive testing for fear of causing a flare.  It is true that a mammogram may be painful for some; however there are other things that you can do to be sure that if you have breast cancer, it will be caught early.
1) Self exams monthly are essential.
2) Did you know that a breast ultrasound can be done in place of a mammogram?  This is a great alternative for those of us with CRPS.
3) GYN exams are also important.

If caught early, a lumpectomy may be all that is needed for treatment.  This can be done under ketamine to reduce the incidence of CRPS spread.

Breast cancer is something that is not in our control, much like our CRPS; however domestic abuse is something that we can prevent or at least get away from.  Because most of us are financially dependent on someone else, we feel that it is ok to be verbally abused.  Yes verbal abuse is abuse.  There are so many other options for those who are abused.  If you are involved in an abusive relationship, please contact a health care professional and let them help you find a way out.

November Is RSD Awareness Month!!

November is National RSD/CRPS Awareness Month.  Although I try to raise awareness all year long, this is our big push every November.

I am the Executive Director of CRPS Partners In Pain, Inc (www.crpspartnersinpain.com)  November 16 and 17 we are having awareness events both educational and social events

Day 1

RSD/CRPS is a neurological chronic pain syndrome that strikes the young, the old, men and women.  Sufferers are seeking medical care in a system that doesn’t really understand the disease.

The purpose of this symposium is to cover the facts of CRPS, where research is headed and hear from a patient, and an author who has written about CRPS.

WHEN:  November 16^TH, 2013

WHERE: Drexel University’s New College Building

COST;     $25 registration

FOR MORE INFORMATION:  www.crpspartnersinpain.com 

TO REGISTER

SPEAKERS INCLUDE: Dr Pradeep Chopra, MD

  Dr Guillermo Alexander, PhD

  Nancy Renée Cotterman, Author and Advocate

Please share this information with friends, family members and your health care professionals.

Day 2

Not Just Sandwiches in Warminster PA is not only allowing us to take over their restaurant but they are donating a portion of their sales on November 17, 2013 to Partners In Pain, Inc.

CRPS Partners In Pain, Inc will have awareness items such as T-Shirts, jewelry and raffle items.  You will have the chance to meet and talk to others with CRPS.  Believe me when I say that nothing compares to sitting in person and talking to a fellow RSDer. 

So, what can you do to promote National RSD/CRPS Awareness Day?

• I have a bracelet that is orange and has CRPS Awareness on it (we will be giving bracelets to everyone who registers for the symposium).  I am asked all of the time what it represents.  I whip out my handy brochure on CRPS and give them a brief education on it.
• Drop off brochures at your pain management physician's office, PCP's office, etc so that others will read it while waiting in the doctor's waiting room.

Theses are just two ideas.  I'm sure that you can think of some more.  Please share them with us.

New Writing Project

I worked as a pediatric nurse from 1991 to 2001.  People always ask me how I could work with children.  To me it is the best nursing job that there is.  We all have our own niche and mine was pediatrics.

After talking with Dr Pradeep Chopra, MD I realized that the pediatric population is under served when it comes to pain diagnosis and pain management.

I am looking for children - teens who have chronic pain.  What are their diagnosis?  How do they feel that they are treated?  Does the medical profession believe that they are in pain?  How does it affect their schooling?  Their families?

I would like to have some children - teens write about their experiences and share them with me.  With their parents' permission I would like to incorporate it into my book.  I would also like to hear from their siblings and parents on how they feel seeing their sibling/child in pain.  What helps them?

Please send these stories to rsdadvocate@yahoo.com
I will email you a release.
In addition to stories, photos of the affected parts of the body would also be appreciated.

NOVEMBER IS NATIONAL RSD AWARENESS MONTH

NOVEMBER IS NATIONAL RSD/CRPS AWARENESS MONTH 

CRPS PARTNERS IN PAIN, INC

IS

PROUD TO PRESENT 

RSD/CRPS AWARENESS MONTH SYMPOSIUM

RSD/CRPS is a neurological chronic pain syndrome that strikes the young, the old, men and women.  Sufferers are seeking medical care in a system that doesn’t really understand the disease.

The purpose of this symposium is to cover the facts of CRPS, where research is headed and hear from a patient, and an author who has written about CRPS.

WHEN:  November 16^TH, 2013

WHERE: Drexel University’s New College Building

COST;     $25 registration

FOR MORE INFORMATION:  www.crpspartnersinpain.com 

TO REGISTER

SPEAKERS INCLUDE: 

Dr Pradeep Chopra, MD

 Dr Guillermo Alexander, PhD

Nancy Renée Cotterman, Author and CRPS Advocate

Jess Feinberg, patient

NOVEMBER IS NATIONAL RSD/CRPS AWARENESS MONTH 

CRPS PARTNERS IN PAIN, INC

IS

PROUD TO PRESENT 

A MEET AND GREET FUNDRAISER

WHEN:  November 17^TH, 2013

WHERE: Not Just Sandwiches in Warminster PA

Fundraiser:     Not Just Sandwiches is donating a portion of the sales to CRPS Partners In Pain, Inc.  We will also have a raffle and RSD Awareness items for sale

FOR MORE INFORMATION:  www.crpspartnersinpain.com 

TO REGISTER

RSVP To:  rsdadvocate@yahoo.com

NOVEMBER IS NATIONAL RSD AWARENESS MONTH

NOVEMBER IS NATIONAL RSD/CRPS AWARENESS MONTH 

CRPS PARTNERS IN PAIN, INC

IS

PROUD TO PRESENT 

RSD/CRPS AWARENESS MONTH SYMPOSIUM

RSD/CRPS is a neurological chronic pain syndrome that strikes the young, the old, men and women.  Sufferers are seeking medical care in a system that doesn’t really understand the disease.

The purpose of this symposium is to cover the facts of CRPS, where research is headed and hear from a patient, and an author who has written about CRPS.

WHEN:  November 16^TH, 2013

WHERE: Drexel University’s New College Building

COST;     $25 registration

FOR MORE INFORMATION:  www.crpspartnersinpain.com 

TO REGISTER

SPEAKERS INCLUDE: 

Dr Pradeep Chopra, MD   

Dr Guillermo Alexander, PhD

Nancy Renée Cotterman, Author

Jess Feinberg, patient

And yet it continues

I am at the end of my rope.  I got a call this morning from a prominent physician.  He shared my book with a colleague who then wrote a review.  He franticly called my friend upset about the remarks to his comments.  These bullies assumed because they were using false identities, so was the doctor.  The reviewer is a well known doctor and he used his actual name to write the review after reading it.

We tried to set up a conference call to see if we could resolve this once and for all.  They refused to participate.  My 82 year old mom and my daughters have read this trash on amazon, on Facebook and comments on my blog which were later removed.  I do not hate these people.  I think that what they are doing is childish, hurtful and amounts to bullying.  Prior to this 18 month long attack, I had no feelings about them one way or another.

I worked for 10 years as a nurse to put my daughters through private school as my daughter is blind.  The first 5 were before my accident and the second 5 1/2 were after when I was the Director of Nursing of a Home Health Company.  They fabricate their version of the truth; I only worked as a nurse for 10 months?  I became an RN in 1991, went on to get my BSN.  I completed the BSN program in 1995 and had started a master's program.  How is that 10 months.

The lies and bullying go on and on.  It never ends.  I know that they want to see me close up and stop helping people.  If they spent as much time and energy helping others as they do attacking me, the world would be a better place.  Instead, they divide the CRPS community, call directors of large non profits telling more lies and are not womanly enough to get on the phone and say it directly to me.  Instead they create false Amazon personalities, get their friends to post crap, etc.

I do not know how much more I can take, but that is what they want.  I am typing this with tears running down my cheeks.  Enough is enough.  Crawl back under your rock and leave me alone!!

Hope

This has been a difficult year for me on Facebook but a fantastic year with my family.

One of the more well known Pain Foundations suggested a conference call to see if these differences can be over come.  I am more than willing to talk things out.  We have not selected a date or time (we are all in different states which can be challenging with the time differences.  I am hoping that all parties will go into this discussion with open arms and an open heart.

A Day We Will Never Forget

Today marks the 11th anniversary of 9/11 attacks on the World Trade Buildings.  I'm sure that all of us over 16 can remember what we were doing that fateful morning.  It was my last day at work.  I was packing up while watching my 11 mo old God Daughters (there mom was at school).  I had the TV on to keep them occupied.  All of a sudden I was watching live as the plane struck.  I left the house at 5:00 am to get to work early to finish packing.  My husband often makes day trips to NYC for work.  I can tell if he is in the office or seeing a client by the way he dresses.  Well, that morning I left before he was awake.  The cell towers and his office phone had been knocked out.  My oldest daughter was in college at the time.  She asked if her dad was out of town.  I told her that I did not know and would call her as soon as I knew something.  My husband was in his office that day.

The enormity of that day's event put into perspective my final day of work.  For five and a half years, I had struggled to continue working.  All of that was dwarfed as I sat in the office glued to the TV.

Since that day, there have been some happier 9/11's.  My first cousin Dave and his wife were married on her birthday, 9/11 and that very same 9/11 Jim's cousin got married.  All in all it is 9/11/2001 we will remember forever.  The brave first responders that were lost, those who worked in the towers, the children in daycare and all of the raw emotion that everyone felt.

For me, 9/11/01 marked the end of my career as a nurse but for the country it was a wake up call.

Perplexed

I am at the end of my rope right now.  Besides having a huge flare because I was smashed by an elevator,  the weather changes, etc I am sick and tired of people accusing me and my friends of things that are not true or are half truths.

I have never publicly bashed anyone.  In private, I may have expressed frustration about people's action but never publicly.  I have never harassed anyone with non-stop emails, posts, etc.  It is not in my nature. I am a very trusting person, which has come back to bite me. Now I don't know who to trust outside of a small group of people.

About 18 months ago, I was added to a veteran's group by a friend who is a veteran to share my CRPS knowledge.  While posting in the group, I had a difference of opinion with one of the group's members over the definition of remission.  I though that we agreed politely to disagree.  Since I was not a vet, but an invited guest, I thought it would be best to leave the group.

The next thing I know, I am being called to ask why I am apposing  testimony in front of congress that I knew nothing about.  I had no opinion or reason to chime in about veteran affairs since I am not a veteran. I thought that the difference of opinion had been resolved in the group.  Obviously I was wrong.

Things seemed quite for a while.  All of a sudden, someone else was harassing me with nasty messages.  At that time, I did not know that there was a connection between the two.  I added a third party to the message for the very reason listed above.  That situation calmed down.

The next thing I know, CRPS PIP was asked by an individual who I did not trust to help someone that I did know.  I asked this individual if they wanted to be part of the board.  Again, I did not know that there was a connection with this individual either.  During our board meeting, done on line as we are in several different states; we discussed having some other groups split the cost of the financial help to this individual.   I was told that neither group was in a position to do so.  Since I didn't know (and still don't) what the mission statement was of the one group, in private I asked that question and a few more.  This was done in a private chat; not publicly.  Six days later this person resigned from the board stating she wasn't comfortable with the group not having liability insurance.  I had not had a chance to officially add her to the board on paper, I just added her to our meeting.  I never said that I kicked her out or anything like it.  I said that I had not officially made her a board member yet.

Again, there is a calm period.  Next thing I know, the privileged information contained in that board meeting was publicly posted.  Two innocent people had their private business publicly posted.  After that, the posts, emails, Amazon comments, and blog comments began.  If my friends (not prompted by me) tried to defend me, they too became targets.  They were barraged by wall postings, emails, etc.  My daughter saw one of the nasties public postings and was very upset by it. I had to unfriend my mom and step father to keep them from seeing what was going on.  Yes, in the beginning I defended myself but that just made them harass me more and more.  I tried ignoring them.  That did not work either.

Next, I get an email from the head of an organization that I have been a part of for many years stating that he needs to speak with me urgently.  Because of family issues with my daughter and her new baby, I was away for four and a half months.  My husband and I took some time off to get away.  I responded to the email saying that I was not making or accepting phone calls at this time.  I also indicated that I had a pretty good idea what it was about.  Back comes an email loaded with accusations made by a third party against me.  My nice vacation was ruined as I cried on my husband's shoulder about all of this for the first time. I had not shared any of this with him until now.

So here I am back in DC to see my grandson and the saga continues.  I do not see these individuals as a threat but obviously the see me as one.  Why else would they go to such great lengths to bash me in so many mediums?  I will not stop what I am doing to help others.  I will not name names although my name and that of my friends have been tossed around openly.  Our children, grandchildren, cousins, aunts and uncles all had to read this trash about us.  These are people who volunteer their time to help others even though we too have this monstrous disease.  Stress and emotional upset make our pain increase just like everyone else with CRPS.  Don't they have better use of their time?  How can they hate someone so much that they make every day a nightmare?  I do not understand it and I never will; however if I let them stop what I am doing, they win.

So, what can I do or say to stop this?  I have no clue.  Thus the title perplexed.  Whatever it is that you think that I have done, I have no malus towards you in spite of all of your antics.  It is not in my nature to hate people.  We are all human and make mistakes.  I do take issue when you involve innocent people who have a friendship with me or I was trying to help. They should never have been dragged into whatever your issue is with me.


At this point, I think that it is defamation of character.  Because it crosses state lines, that would make it a federal offense.  I have been advised that I probably have a good case.  That will just stir up more crap and continue the harassment to myself and innocent people.  I am at a loss as to what I should do.   I am perplexed.  I have been told that what goes around comes around.  I've been told that the people who really know me, know that I am an honorable person.  Right now, I just want to be left alone.

September Is National Pain Awareness Month

September is National Pain Awareness Month. So why do we need a Pain Awareness Month?  Most people think of pan as a symptom and not as a disease in it's own right.

When we are injured, we have acute pain.  But not all pain is acute pain.  There are many syndromes that cause chronic pain and are diagnoses themselves.

CRPS/RSD = when the nervous system goes haywire and the nerves send messages to the brain saying that the injury isn't healed.  The nervous system is sending independent nerve signals.  It is usually  preceded by an injury.

Fibromyalgia = it is a more generalized pain that is accompanied by fatigue

EDS =

What is Ehlers-Danlos syndrome?

Ehlers-Danlos syndromes are a group of disorders which share common features including easy bruising, joint hypermobility (loose joints), skin that stretches easily (skin hyperelasticity or laxity), and weakness of tissues.

The Ehlers-Danlos syndromes are inherited in the genes that are passed from parents to offspring. They are categorized according to the form of genetic transmission into different types with many features differing between patients in any given type. The fragile skin and loose joints is often a result of abnormal genes that produce abnormal proteins that confer an inherited frailty of collagen (the normal protein "glue" of our tissues).

In 2001, researchers discovered a new form of Ehlers-Danlos syndrome that is caused by an inherited abnormality in a protein other than collagen that also normally plays a role in binding together the cells of our tissues (including the skin, tendons, muscle, and blood vessels). Abnormalities in this protein, called tenascin, also lead to a form of Ehlers-Danlos syndrome. Researchers suspect that tenascin could play a role in regulating the normal distribution of collagen in the connective tissues of the body.

Arthritis =  joint pain and inflammation

I could go on and one but you get the picture.  We need to educate the public that pain is not simply a symptom by a syndrome of that is ongoing and requires specialized treatment.  

Dissapointment

Like millions of others, I suffer each day with physical pain that is ranked higher on the McGill Pain Scale than Childbirth or Cancer.  Most days, I do my best to push on.  Right now, I am being bombarded on every source of on line organizations by people who must have nothing better to do with their time.  Normally my blog is a place where I can write down how I am feeling, alas they have infiltrated here as well.

I have spent the majority of my adult life helping others. In 1975 I started as a Freshman at Syracuse University and graduated with a BA in psychology.  The business that I worked for when my husband and I moved to PA was being moved to Central PA and I could not go with it.  At the age of 32, I went to a local community college to get an AS in nursing.  I had a blind daughter so I had to be involved in al of her activities.  I helped others with blind children by telling them what I had leaned with my daughter.

In 1990, the four year Universities like Villanova would not accept college credits over 10 years old  because they were considered too old.  Now there are a ton of schools helping those with a degree in something other than nursing expedite their way to getting an RN.  My local Community College would take those "old" credits.  At that time you had to camp all night to be given a number to have your application reviewed (it is now done by lottery).  There were as many as 500 people competing for 135 spots.  So in 1989, I started nursing school.  This enabled me to be a nurse extern the summer between my two years and to begin working as a RN as soon as I passed my boards. I had my girls in private school and my salary covered their tuition.  Sadly this was the best way that my daughter could get an education.  The teacher student ration was 1:30 in the public schools and 1:10 in the Friends School.

Now that these same SU credits were on a recent transcript, Villanova accepted me into their RN to BSN program.  Since I was raising two children and working full time, I graduated from Villanova in 1995.  My plan was then to go on and get my CNM.  Those plans came crumbling down when March 4, 1996  when my car was hit head on.  This was the start of my RSD journey.  In 2001 after having Ketamine Coma, I once again took the entrance exam and was accepted into a CNM program.  Ketamine was not the cure that my doctor had hoped.  With a 4.0 average, I had to take medical leave as I realized that there was no way that I could do the clinical portion which meant a long hours on your feet.

I was lost for a while.  All of this schooling and only 6 mo as a BSN.  I tried volunteering at a local NICU but they required that you rotate through 8 NICU units and do an 8 hour shifts.  If I could do that, I would be working.  I became involved as a mentor through RSDHope.  I met some wonderful people through that program.  But it really didn't help me occupy my time.  I had tried on line support groups before Facebook and they were just bitching sessions. I withdrew from them immediately.  I started doing scrapbooking for all of my friends.  That was fun and a great gift to give people until I developed RSD symptoms in my hands.   I was then presented with the offer to be a co-admin of Ketamine Klub on Facebook.  I joined Facebook to keep in touch with my cousins; many of who are 12 to 16 years younger than I am.  They were just having their kids and mine were grown and gone.   In Ketamine Klub,  I could use the skills that I learned doing a desk nursing job for 5 1/2 years after my accident.  I knew what the insurance companies needed to hear and how to appeal.  I'd found my nook. Or so I thought.

Later, I began corresponding with a younger member and talking about the need to start a non-profit to help those who had lost the battle with workman's comp or their insurance pay for their treatment.  We drifted apart and so with some others with RSD researched how to start a non-profit.  We did some research and realized that it would take a while to set it up.  Another Ketamine Klub member told me about a friend who ran a non-profit and you could work under his FED ID.  Well after doing considerable research, we found that he had lost his non-profit status. We took ownership of our website and started the process of becoming our own non-profit.  That is where we are now.  I guess that this was seen as a threat to others within the RSD community because I began to get attacked on every segment of the Internet.  At first I fought back, but that did nothing but egg them on.  I am now doing nothing.  Let them rant and rave.  The people who really know me, know the truth.  They know that I have a big heart and hate to think badly of anyone.

Once I joined Ketamine Klub I have had two Facebook Accounts because the number of posts on the account that I shared with family and close friends had become so big that I wasn't able to see my family's posts.  I opened a personal account.  Well public posts were made that my daughter saw.  Understandably this greatly upset her.

These people have ways of seeing things that you think are private, are relentless and quite honestly, I don't know how they have time to do all of this crap and at the same time actually help people.  I will not share their names.  It doesn't mater who they are or who they are using to get the information.

I am no longer a trusting person willing to help anyone who comes to me.  I do not like the fact that I can no longer trust anyone except for a few people who I speak to regularly or have met.  What a disappointing world we live in if you can't go out and help people without thinking that every word could be shared.  Privileged information about people's health and finances have been posted openly with no regard to their feelings. I am not upset about what they are doing to me as much as how the fall out has hurt different people.

If it were not for the love and support of this close knit group, I would take down my Facebook page for RSD and find something else to fill my days laying on my sofa at home.  I feel terrible that right now I am turing away people who might need my help.  They will not stop me.  I will regroup and get back to the role I was born to do.  For right now, I am disappointed in the world of pain.  Where is the compassion for your fellow RSDer?  They have none.  At least not for this RSDer who has been battling RSD for 17 1/2 years now.  I know that the RSD community reflects the world at large.  This means that there are crazy people, nasty people, loving people and those who don't want to be bothered.  That is how the society at large is.  I guess the RSD community reflects our society at large.  I find this very disappointing. I have never published who they are or publicly said anything bad about them.  Hell, I don't even know them.  How can you hate someone that you don't really know?

I will not give up or give in.  I will continue to do the work that I do.  I'm literally sick from all of this with pain levels soaring.  I will not engage; that is my mantra ; I will not engage.

Moving Forward

Well week 2 of gluten free went better than the first.  It is so much easier to do it when you are eating out.  My husband could eat what he wanted and I could choose gluten free.  This week I had nothing made of gluten and had no desire for it.

When I am back home, I will have to purchase some gluten free things.  Last weeks cinnamon raisin bread that I made was a hit with my husband as well.  This gives me hope that I can stock the kitchen with things we will both like.

There have been some toxic people causing drama and pulling me away from the work that I love to do.  I will move on.  I am excited to be going to see my grandson in a couple weeks.  I'll be going to RSDSA's conference in Ft Lauderdale Sept 28 so I have so many things to look forward to.

I lost it yesterday.  I should have just walked away but I didn't.  My pain levels were soaring.  I shut off my computer and just enjoyed time with my husband.  Now I have a new outlook on things.  There are people who depend on me and I depend on them.  I can not allow myself to be sucked into their drama again.  I need to delete it and ignore it.

I am sad that my daughter had to see what was written publicly but she knows her mom well.  She was upset for me.

Meanwhile, Ian now has two bottom teeth.  He is starting to work on the top ones too.  Even in this short period, I've missed some milestones.  I'll be going back up soon and will enjoy my time with him.

Thank you to all who have supported me though this difficult week.

Unitity

Earlier this week, I posted that I wanted harmony among the organizations and Facebook groups that help people with CRPS.  I have to admit that after a while, I could not contain myself and was drawn into the mess.

I am truly sorry for getting involved.  I removed it all from my wall.  I can not control what others do but I can control what I do.  It seems that other innocent people were dragged into all of this who didn't know what they were posting was hurtful.

I have a duty to those involved with CRPS Partners In Pain, as the Executive Director, to lead by example.  I did not do that this week.  I let myself get dragged into it all.

Let me clarify a few things.

• CRPS Partners In Pain, inc is a Florida Corporation
• We have our EIN
• Our non-profit status is under review by the IRS and as it usually takes up to a year, by law we can say that we are a non-profit as the status will go back to the beginning; up to three years.

I will hold myself up to a higher level and will not let myself be drawn into these cat fights.  I wish that I had been strong enough not to involve myself from the beginning  These instances have forced me to resign as an admin for my teen to thirty group (not mind but theirs) and has caused me to be removed from the only other group that I was a member of (other than my own) because people feel the need to attack my credibility.

My actions were counter productive in helping the CRPS community work in harmony.  This will not happen again. No matter what they post about me, I will not respond and will continue to ask my friends and colleagues to do the same.

Thank you for your support

Nancy

Pain Awareness Month

September is Pain Awareness Month

We are just ten days from the beginning of September.  September is Pain Awareness Month.  What can we do to spread the fact that pain itself is an illness and not just a symptom of an illness?

• Ask your local library if you can set up an information booth.  Print out some of the flyers available from different non-profits such as: RSDSA.org, crpspartnersinpain.com, US Pain Foundation, etc.
• See if your local pharmacy will allow you to put fliers near the pharmacist counter.
• Talk to people about your pain syndrome
• Have a T-shirt made about your pain condition and use it as a conversation starter.

It is important for those of us with chronic pain conditions to help to educate the general community.  There may be someone that you reach out to who has an undiagnosed pain syndrome.  There may be someone you can educate.

It is difficult for some of us to get out and about.  If you have others in your community with a chronic pain syndrome, see if together you can man a booth at a health fair, county fair or in some of the locations mentioned above.

If you have awareness ideas, please share them with me and my readers.

September 28, 2013 at Great Event

September 28th, 2013 RSDSA.org is sponsoring a wonderful conference in Ft Lauderdale FL.  Such distinguished speakers:  Dr Pradeep Chopra, MD Dr Phillip Getson and Kaitlyn Stevens will be speaking.  The cost is only $25 to register.  I for one am going and would urge anyone in FL and neighboring states to register now. Go to www.rsdsa.org to register.  Don't let this great opportunity pass you by.

The Facebook support group that I administrate has people coming from TX, PA, RI, NC, etc making the trip.  You can get a great hotel rate at the Residence Inn Ft Lauderdale.  Their phone number is 954-723-0300 for a weekend rate of $99 a night.

I hope that you will join me in supporting this wonderful organization and these great speakers.  I can hardly wait to meet them all.

Nancy

Harmony

I do not understand why everyone with organizations helping people with CRPS/RSD feel that it is a competition.  Why can we not work together to help one another?  Why attack others who are trying to help those with CRPS/RSD.

I know that the CRPS community is a representative of society where unfortunately there are people who are nasty and unscrupulis.  You would think that because they know how difficult it is to live with this monster, that they would have more compassion for one another.

I could sit here writing and name names of those who are making it their mission to try to stop CRPS Partners In Pain, Inc and our board from helping others.  I will not stoop to their tactics.  I will not give them the satisfaction of affecting the good work that we are doing for others.

Everyone associated with CRPS Partners In Pain, Inc volunteers their time.  No one take a salary.  We all either have CRPS or have a family member with CRPS.  Every donation goes directly to help those who otherwise would not be able to get treatment.  Additionally, we try to provide information on CRPS/RSD.  RSDSA.org has great research articles and information on learning more about CRPS/RSD.  I support their efforts 100%.  The board of CRPS felt that there was no need to duplicate the fine work that RSDSA.org is doing with research funds and education.  They also have a small fund to help people with RSD catch up with bills and assist with treatment.  We felt that we could be more effective just trying to get those with CRPS who otherwise would not be able to afford treatment some financial assistance.

There are several CRPS/RSD non-profits.  We each need to work together toward the betterment of the CRPS/RSD community.  I freely vow to help any of the other organizations that represent chronic pain patients or specifically RSD.  Some of these organizations are:
www.rsdsa.org
www.rsdhope.org
www.forgrace.org
http://powerofpain.org
US Pain Foundation

As members of the chronic pain community, we need to work together.

Going Gluten Free

Well today I am starting a gluten free diet.  It isn't because I have celiac disease or any known gluten sensitivities.  My PCP suggested going gluten free and preservative free to help with my joint pain.  I was eating preservative free during the four months that I lived with my daughter, son in law and grandson as they eat preservative and organic.  I did all of the cooking.

I ordered a cookbook that arrived today and did some grocery shopping as well.  I am not much of a bread eater.  So cutting out wheat bread shouldn't be a problem.  I actually made a gluten free potato muffing for my "kids" last week and it was very good.  I make a to die for pumpkin cookie recipe which I think that I can substitute the wheat flour with another.

The hardest thing for me to give up is my coke zero.  I brewed a large batch of green tea and started drinking that this morning instead of my morning coke zero.  I hate coffee.

After going gluten free for 8 weeks, I am going to add PurePea which has also been recommended.  I do not want to start both at the same time as then if I feel an improvement, I won't know which one it is.

Back at Home

This has been a crazy year for our family.  The birth of our grandson Ian Alexander Hawley has brought so much joy into our lives.  I spent a winter in Washington DC.  It was my first winter up north in seven years.  I did okay during the winter.  It was June/July with it's rain that caused me the most issues.  Both of my feet have been swollen and cracked

NEW ON LINE SUPPORT GROUP FOR CRPS RUN BY NANCY RENEE COTTERMAN

Facebook has been making all sorts of changes making it very difficult to run our support group: Ketamine Klub For CRPS/RSD Patients.  I am starting a new support group which will give information on all treatments for CRPS, research articles and support for it's members.  The group can be found on the web site for my non-profit:  www.crpspartnersinpain,com

Click on CRPS Support Group and sign up.  Right now I have to approve all posts.  Once we all get familiar with this new protocol, I will remove the caveat that I must approve all posts.  Please join me in our new support group.

For those in Ketamine Klub For CRPS/RSD Patients, the site will remain there but I will not be receiving email updates after mid-August as I am going to deactivate my account.

Sincerely,

Nancy Renée Cotterman 

Strength

It has been quite a while since I have had time to post.  It is amazing what you can do when you have to.  Since Ian was born, just over 4 months ago, I've been doing things that I haven't done in years.  There have been some ups and downs since Ian arrived and I was able to step up and help out.  I surprised even myself.

Having Ian in my life has been a great joy.  He is always smiling and happy.  I have been here in DC with him all but 2 weeks and 4 days of his life.  I have watched my daughter bloom into a wonderful mother and my son in law a wonderful involved father.

Next week Kim's best friend will begin to take care of Ian and another 4 month old as part of a nanny share.  My role will begin to wain.  It is great that things have stabilized but I will miss being here every day seeing everything that Ian does.

Reflections

I have been in Washington DC for nearly 12 weeks now for the birth of my first grandchild.  I have one week left until I must head home.  It is going to be extremely difficult to leave.  A lot has happened in this 12 weeks that have required me to push beyond my CRPS limits.  I've been doing things that I haven't done in years.  For example: I walk to and from my apartment and my daughters house daily (a half mile).  I have been doing housework, laundry and grocery shopping.  All of these are things that I ordinarily do not do.  In spite of all of this extra physical activity, I have only had one really bad flare up.  I guess it has really been a mind over matter experience.  I've been beyond exhausted at the end of every day but exhausted in a good way.

I am honored that my daughter and son in law wanted me here for Ian's birth.  Even though his birth didn't go as planned, we managed.  We had some other difficulties that put more of the responsibility of daily activities on me but I have enjoyed being needed.

I am already planning my next trip to visit so that it won't be as difficult to leave.  When I return he will be twice as old as he is now (now 2 mo will be 4 mo in July).  I doubt that he will remember me after that length of time.

This has been one of the most memorable times of my life; after the birth of my own children and my wedding.  My goal is to be able to come up here at least quarterly so that I can have the type of relationship with Ian that Kim and Laura had with their grandparents.

Book Release

Hi!
I am pleased to announce that my book CRPS/RSD Facts, Fiction and Feelings is now available as an e-book.  Go to:  www.crpspartnersinpain.com to order your copy.  All proceeds will go to CRPS Partners In Pain.  CRPS Partners In Pain is a 501 ( c ) 3 non-profit whose sole purpose is to assist those in financial need get the treatment that they would otherwise be unable to obtain.

Additionally on our web site, you will find information on CRPS and current articles of interest to those with CRPS.

~Nancy Renée

Being a grandmother with CRPS

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

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

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

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

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

Anniversaries

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

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

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

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

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

New To RSD?

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

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

Helping Those In Need

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

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

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

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

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

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

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

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

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

Nancy

Non Profit

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

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

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

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

Nancy