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.