Written in memory of Nancy Lou Sarver
September 13, 1957 – May 16, 2006
By: Mandy Duchesneau (Soon-to-be Mandy Breden), 2011

I’m Nancy’s daughter, Mandy.  I am writing this memoir in her honor, hoping that survivors of this disease will never give up hope on a cure, and never lose faith in their legacy.  Not many people can relate to a family member of a patient of RSD, but I hope this reminds people that life IS short, no matter how bad the pain feels, and you can’t ever give up the fight to keep living.

My mother contracted this disease around the age of 25, several years before I was born.  The doctors explained that she was infected with Reflex Sympathetic Dystrophy Syndrome when she had a back operation on a slipped vertebrae disk.  After her first symptoms of pain were revealed, the doctors assumed she had Multiple Sclerosis.  (It was over a decade before the doctors realized that that was the wrong diagnosis).  Several years later she became pregnant with me, despite the doctors telling her she shouldn’t try to bear a child.   She claimed was the healthiest period of time she had in her life since the onset of the disease.  It was very difficult for her to take care of me on her own once I was born, and thankfully her mother, my grandmother, lived with us and helped raise me. 

My mother was very intelligent, and throughout her career, as short lived as it was, she was proud and excited to work everyday.  When I was about 6 years old, about 9 years after the beginning of the disease, she finally had to stop working.  It was too difficult for her everyday, and the muscle spasms were happening too frequently now.  A couple years later she had a few failed attempts to regaining her career, and eventually was never able to work again.
Her RSD was in her entire body, and it wasn’t until about 15 years after she contracted it that a doctor finally realized what she had.  Even when they KNEW that it was actually RSD, there was nothing that they knew of that would help her.  There was no medicine left that would help, she was tolerant to all the pain killers.  Unfortunately her pain, health and faith continually got worse.  By the time I was about 17 (20 years now having RSD) she was practically bedridden.  Her spirit was broken, and along with the negligence and lack of experience from the medical community, she lost hope in a cure.  May 16, 2006 her prayers were answered and pain finally stopped when she passed away in our local hospital.

I know this sounds like a very sad story… unfortunately there aren’t always happy endings.  But for me and my family it was, because even though I was crushed as a 20 year old young female to lose my mother, I was happy to see she wasn’t in pain anymore.  It’s truly invaluable to learn some of life’s hardest lessons before you’re even old enough to drink, or finished with college.   I’ve had the weight of the world on my shoulders since I was 19 years old, and though I miss her, I wouldn’t give that up.  It’s taught me that life IS short, you can’t count on everybody being there tomorrow, and you have to be thankful for everything in this moment.  Don’t wait to share your love.
It’s horrible to watch someone you love give up hope for living.  So my message to all of you, never stop thinking about your legacy and the people you’re leaving behind.  I know in 2 months when I walk down the isle to marry my husband, she’ll be looking down on me, and she’ll always be with me.  Frankly, I sometimes feel luckier than most, because I have at least one more guardian angel than most people do.

Col Douglas Strand, a DAV Life Member, was injured in a line of duty in July 2008 which led to his acquiring a central nervous system disorder called Reflex Sympathetic Dystrophy (RSD) also known as Complex Regional Pain Syndrome (CRPS).  This affliction can result in one of the greatest forms of pain known to man - higher than cancer, amputation of a digit, or childbirth.  After being processed for disability retirement by the Department of Defense (DoD), he discovered there was no rating criteria for RSD in the VA Schedule for Rating Disabilities (VASRD).  Since an estimated 5% of nerve injuries result in RSD, without having RSD included in the VASRD, many will be discharged with no benefits or inadequate benefits.

On 25 Oct 10, Col Strand testified before the Advisory Committee on Disability Compensation, in Washington DC.  The Committee’s charter is to make recommendations for change to the VASRD.  Along with Col Strand, Peter Moskovitz, MD, an Orthopedic Surgeon and a member of the Board of Directors of the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) and also of RSDSA’s Scientific Advisory Committee, and Barby Ingle (Best-selling author about her experience with RSD) testified before the Committee. 

Dr. Moskovitz testified that the diagnostic criteria for RSD/CRPS are based on good science.  In comparison, Fibromyalgia,  which can be rated as high as 40% in the VASRD, cannot be diagnosed with as much certainty and reliability as can RSD/CRPS. Ms Ingle testified that the syndrome has been known and diagnosed since the Civil War.  The distress of her own experience, that included a 3-year delay in diagnosis and much unneeded treatment, convinces her that the VA should rate RSD/CRPS for our veterans. 

Col Strand testified that a rating under an analogous VASRD code will be incorrect, since the cause of RSD/CRPS resides throughout the nervous system, including the brain and spinal cord, and not only in a nerve, bone, or muscle group for which the VA typically rates physical impairments that are complicated by RSD/CRPS.  “It needs to be rated as a central nervous system disorder” he said, adding “If MS can be rated at 30% and Fibromyalgia can be rated at 40%, RSD deserves its own rating criteria.”

According to a studies sponsored by RSDSA, and TREND in the Netherlands, there are between 50,000 and 78,000 new cases of RSD/CRPS in the US each year.  How many are veterans is presently under study.

After a 2-hour session and rigorous question and answer periods, the Committee recommended a study on RSD/CRPS among veterans.  With the information provided, the committee will determine what further actions are needed to determine the best course of action toward getting RSD/CRPS added to the VASRD.

In a letter to Col Strand, the Committee Chairman James Terry Scott, Lt. Gen. U.S. Army (Ret) said, “The information you provided and the exchange we had with you contributed greatly to our understanding of the difficulties encountered by those suffering from Complex Regional Pain Syndrome (CRPS) in effectively treating CRPS’ disabling symptoms.  In particular, we valued your perspective as a reservist navigating the military medical retirement system and also your recommendations for the DoD-VA pilot program.”

Patient - Robert Hinton’s struggle with RSD

Update: April 25, 2010: Robert underwent the inpatient Ketamine Infusion process and will have his first set of boosters in the coming weeks. The Ketamine treatment helped his pain, At the time of this update, we are waiting to see how much progress it has provided him.

Mr. Hinton is 36, of Cumberland, RI married his High School sweetheart, Lee, almost 13 years ago. The couple was leading a happy life. They also love being parents to their two young daughters. Robert was involved in a car accident in February 2005. The family’s life changed forever. This car accident caused Robert to develop Full Body RSD. RSD is a chronic neurological condition which causes severe burning pain as well as other symptoms listed on the symptoms page of this site. This pain is 24/7 and does not stop. Prior to Robert’s accident he had a career selling durable medical equipment and was also a Firefighter and EMT in North Smithfield, RI.

Robert has undergone all standard treatments for RSD including physical therapy, over 100 nerve blocks, epidural injections, medications and nerve stimulation and nothing has helped slow the disease progression. Robert has been seeing Dr. Schwartzman, an RSD specialist from Philadelphia, PA,  for his care. Robert is working hard to raise the $30,000 for his needed Ketamine infusion and travel expenses. Robert’s family held a Spaghetti and Meatball Dinner / Raffle, on September 27, 09 at their Parish, Saint James Church, Manville, RI. The family was able to raise almost $3,000 for Robert’s Ketamine treatment. The Power of Pain Foundation has also awarded Robert a small grant to help with travel costs for this procedure. The Hinton family has created a website were additional donations can be made, you can learn about RSD, view news footage and follow Robert’s progress in greater detail.

The website is http://www.robertsfightwithrsd.webs.com.

Please also check back here to see progress notes on Robert’s fight.

Patient - Kristin Birchfield’s struggle with RSD

Kristin Birchfield is in her early 40’s.  She is the wife of our church’s Music Worship Pastor, Wade Birchfield, and is the mother of a beautiful little girl named Kiaura (now 7).  A little less than 8 years ago, when Kristin was in labor with Kiaura, she underwent an epidural injection which was improperly administered. In fact, the anesthesiologist inserted the needle at least six times before he found the effective location for the injection.  That event triggered the RSD.

Kristin has never been able to enjoy her role as a mother because of the constant pain she has been in.  For years, the family tried to hide the severity of the condition, ashamed, in a way, to let people know what they were going through, and terrified that their young daughter might find out what happened and somehow blame herself for her mother’s condition. But now, the condition has gotten so severe that they have finally turned to their friends for help. Kristin is desperate. Before the RSD, Kristin was a model, a singer and an artist. The RSD has taken all that away.  It has traveled throughout her body.  She is covered with lesions and bruises, she has lost all her teeth, her vision is poor, and her vocal cords have deteriorated.  She no longer has the strength or coordination to even hold a paint brush, let alone paint the beautiful pictures which she used to.  The pain is constant and unrelenting in her legs, arms, neck, feet, back and head.  At times, the agony has gotten so bad that she has begged her husband to help her die.

Kristin has tried just about every form of treatment over the years, but only one treatment has provided any real relief.  Several years ago, under the direction of Dr. Schwartzman, she underwent the Ketamine Coma treatment in Germany.  When the ordeal was over, the treatment had worked and she was 90% pain free.  Unfortunately, the relief was only temporary, and about four months later the pain returned, as bad as it had been before. She has been undergoing the Ketamine boosters and the Ketamine inpatient treatments available here in the US through Compassionate Care but the treatments have not been very effective.  Dr. Schwartzman has told her that her only hope for more permanent relief is to undergo another Ketamine Coma treatment.  As you know, the treatment is now only available in Monterey Mexico.  Kristin is willing to undergo the ordeal again, but the problem is the cost.  If you feel you can offer Kristen any help please e-mail us at info@powerofpain.com

Patient - Christine Leiendecker’s struggle with RSD

Name: Christine Leiendecker, Pain Patient

City: San Diego, CA, Sent:: 04/04/2009

Power of Pain Foundation,

I was lucky enough to have someone mention that I should do research on this condition after my injury, December 2, 2006. The X-rays and MRI showed no damage and all doctors stated that my case "perplexed them". Since doing the research, I have seen a pain management doctor and now have a Sympathetic Nerve Block scheduled for May 23rd. Do to finding my saving grace and doing my research my doctor is optimistic that I caught it early enough to keep it from going permanent. I also have a wonderful support group that I would be lost without. Enjoy the show, comedy is the best medicine.

Patient - Mrs. Brummitt’s struggle with Polyneuropathy

Name: Mrs. Brummitt

Sent:: 05/05/2009

I was diagnose with Polyneuropathy and a pinch nerve in my back. I have been in lots of pain for 2 yrs. I have tried physical therapy that did not help and now I go back to my back doctor. I guess he will tell me what is next. WISH ME LUCK PLEASE,

Thank You Very Much,
Mrs. Brummitt

Patient - Wendy’s Thank you to the POPF

Name: Wendy, Pain Patient

Sent:: 04/04/2009

Power of Pain Foundation,

Thanks so very much for all that you are doing to help all of us with RSD!

Peace

Patient - Pat Eaton’s comments on our website

Name: Pat Eaton

City: Tacoma, WA, Sent: 04/24/2009

Thank you for this info!  My husband went through a trauma surgery, was intibated for two and half months was in a coma for  2 months, in rehab for P.T. for 4 weeks, cannot walk, cannot use fingers, has burning pain...  no one could tell me exactly what the problem is. Your site has given me some valuable tools!

Thank you.

Patient - Lil’s struggle with RSD

Name: Lil

City: Buckingham, VA (Arvonia), Sent:: 04/01/2009

Dear Barby (Power of Pain Foundation),

I received the Pamphlets you sent me out, I Thank You so much, I like your pamphlets a lot more than ones I've had and seen, you break down an Important Fact, Not Everyone gets the as I'll put it "By the Book changes", I've met many RSD’ers in my 16 yrs. of having & dealing with it and we all get hit in different ways, some people sweat, some always cold, I like how there put together , gives a not so Brain Surgeon Break down. I had my hubby at work seeing how far you are from us, are you in Colonial Heights VA? I would love to get together and meet and talk with you on possibly jumping on board and helping your Organization in any way I can. You should be very Proud of yourself, the website is Great, I plan on ordering your book and I feel like your the person I've been looking for. Your a Blessing to us All whom Suffer!!!!!!!

Gentle Hugs!!!!

Caretaker - Cathy Bergman’s comments on a POPF awareness event

Name: Cathy Bergman, St. Andrew's The Apostle

City: Chandler, AZ, Sent:: 04/04/2009

(Power of Pain Foundation) Ken & Barby,

Thank you for your energy and brightness, for your kindness and compassion, for the light you shine on the world. Thank you for your time on Saturday, May 17th, 08. I enjoyed your seminar, thanks for some of the insights provided to me. May the Hope you gave to those here continues to be encountered by you and all those you meet.

Many Blessings

Lisa Fibromyalgia and Lupus Patient
www.lupusgirlgoesraw.com

Its been almost 2 years since I found remission and life has never been better!! I've certainly had my ups and downs but once you find a way to feel truly amazing you want to stay there. I'm not talking just OK, or good, no I'm talking incredible!

Lisa’s Blog is about nutrition and the active role it plays in your health and well being. You never realize how poorly you are eating until someone points it out to you, and you suddenly start feeling better because of those changes. We believe what we are told about the food we eat, and yet we don't know anything. In my search for better health, I found the that the source lies within what we put in our bodies and the need to know more about what that is and where it comes from.

Throughout my journal, which began in May of 2009, I hope you will be educated on how to achieve and maintain optimum health though my findings, pitfalls, and awakenings. My hope is that through the information I have been sharing for the past 2 years, from being bedridden with Lupus to dancing the Irish Jig, I can help others find their answers. Not to be 100% raw, but to remember that the bounty of the earth was provided to us for a reason.

You can also visit my sister site, Life Beyond Remission, dedicated to giving you proven and effective means to live your life beyond remission forever. There are clinical trials, articles of research, and links to answers for everyone. You just have to be willing to reach outside the box for answers and you will find them.

If I can help you in any way with your search for better health,
please e-mail me at lisa@lupusgirlgoesraw.com

Volunteer- Corey Edwards, a volunteers experience

Name: Corey Edwards

Sent: Sept 15, 2009

Thank you very much for the opportunity. It was a great experience (being a volunteer). Me and Chris had a great time on stage! Brian's friend Sheldon was looking at me and Chris the whole show like he wanted to kill us cause he thought we were still talking about his clothes. ha-ha. I have been to several hypnotist shows but I have never been as convinced as I was this past show. I look forward to the next show.

Best of luck to you and continue to stay strong! Take Care

Volunteer- Joey Meyer’s, a volunteers experience

Name: Joey Meyer

Sent: Sept 15, 2009

Hi Barby,

Thank you so much for giving us the opportunity to help out! Every one of us from Chi Psi that were there really enjoyed it, not just the show, but learning about your organization and actually helping out. We really had a good time, and think The Power of Pain Foundation has a great cause. We wish the best of luck to you and your organization! And we would love to help out with any other events you may have nearby in the future. So if you ever need a hand in the future, just e-mail or call me and I am sure I can gather up a bunch more Chi Psi's to help out!

PEOPLE WITH PAIN ARE BEING HEARD!
Connecticut's Channel 3 Eyewitness News broadcasted a powerful news story yesterday about fail first and step therapy practices. Reporter Heather Hegedus spoke with Wendy Foster, an Essex resident, who has lived with chronic pain for over eighteen years.

Calm and composed, Wendy honestly shared her journey dealing with a progressive neuromuscular disorder. She was heartfelt as she recalled the many years that her insurance company forced her to take medications that did not relieve her pain. Unable to control her symptoms properly, Wendy's muscles steadily weakened. Now, Wendy relies on a precious black lab service dog named Alli for balance and assistance in her every day life.

Two weeks ago, Ellen Smith also testified before Rhode Island legislature about this same issue. Doctors diagnosed Ellen, a former master swimmer, with Ehlers-Danlos Syndrome (EDS), a progressive degenerative connective tissue disorder in 2004. Just like Wendy, Ellen's life drastically changed due to pain. No longer able to participate in activities she once enjoyed like swimming and home improvement projects, she also has a NEADS service dog named Maggie. Maggie helps stabilize Ellen so she can stand and walk, and brings her medicine from the refrigerator; she even saved her life one night when she stopped breathing.

Too often, we discredit our ability to make a difference. We tell ourselves that we are in too much pain, we do not have the monetary means or we do not have any valuable experience to offer. In addition, we fear further ridicule, criticism and judgment from others. It is a challenge opening up after years of feeling isolated and defeated.

Yet, we forget the power that lies within our stories and universal truths. We dismiss the notion that one simple action can have a significant impact. By making one phone call, e-mailing a state representative, connecting with others with pain or just passing along this information, we have started a grassroots movement.

I am in awe of Wendy, Ellen and everyone else who have the courage and strength to be publicly vulnerable. After years of believing she could not make a difference, Wendy realizes she was mistaken. Now she feels empowered. She understands her life story has everything to do with changing the pain community.

Regardless of the name of our conditions, our experiences and emotions are similar. We all endure debilitating agony, struggle with the same doubts and heartache, question whether we will ever find our answer and worry if we are receiving the care and treatment we deserve. It is no secret pain affects every aspect of our lives. Yet with that said, all of us are resilient, strong survivors as well. 

By coming together and expressing our personal stories of desperation and hope, we grow. We gain insight, support and empowerment. We form friendships that help us find our voice and worth again.

Right now, we are in a position of having our voices heard and our pain validated on a national level. Without inspirational stories, landmark rulings will not occur. One voice makes a difference. Therefore, can you imagine the impact we will have when all of us speak out for what is right.

In order to generate a national discussion about the concerns of fail first and step therapy, we need to continue sharing our stories and photographs. I encourage everyone to become involved in a way that makes you feel comfortable and proud. Please visit the US Pain Foundation website, www.uspainfoundation.org, to learn more about the ways you can contribute. Remember, we all make a difference. We are all part of the solution.

To view Wendy's story, please click here

Tyler Graham is the 10 year old son of Stormy Green Staten. Tyler was diagnosed with Reflex Sympathetic Dystrophy "RSD" a neurological disorder they causes the brain and sympathetic nervous to send constant pain signals through his body almost 24/7. Tyler hasn't walked since Oct, 2010. This disorder has completely taken away Tyler’s ability to lead a normal childhood. His family has found treatment in Courpis Christi, Tx. The treatment is very costly and insurance will not cover it.

We are having a music benefit music by "10 Years Gone” we will have hot-dog plates, cakewalk, face painting, games, a lot of fun for the whole family. Please come and not only enjoy great music, a fun day with friends and family but most of all help this wonderful little boy have the chance every child deserves a normal PAINFREE childhood. For more info Tyler’s mom Stormy Staten @ 662-213-1576 or stormystaten@yahoo.com also by Facebook.

10 Years Gone Music Benefit
May 21, 2011
Furrs Volunteer Fire Department
1159 Sims Gin Road
Pontotoc, Mississippi

Also you can contact Stormy if you would like to donate desserts, time, or have any questions about donations. God bless you all and once again come and help Gods greatest gift a child!

From Stormy (his mother), “I’m married to Terry & I’m mother of 3 great kids a 19 year old daughter Destany 13 year old Drake and 10 year old Tyler. I grew up in Pontotoc where I still have my mom and a lot of wonder friends and family. We recently got the news that my 10 year old son Tyler has RSD which is a neurological disorder that totally took over his body in Oct 2010 so since then myself family and friends have been working and praying to find not only treatment but also other families that know what we have are facing. We are praying everyday that something good comes from this awful disorder if there are any families that know what we are going through please let me know. RSD not only affects the people with it but it effects everyone who loves them.”

July 2011- Update

Tyler underwent Calamare Treatments in Texas with Dr. Rhodes and is out of his wheelchair and going to be attending regular school starting in the fall. Thank you to the POPF for it’s grant as well as all the people who attended the fundraiser in Pontotoc and donated online.