Update 11-3-2008

Hey everyone,

My synopsis and video has been put together with the video evaluation, so my webpage with the International Research and Treatment Center has turned out quite well. Here is a link to that page, please go check it out!

http://www.rsdfoundation.o rg/rutgers.htm

Also below I am providing links to some very informative video clips

award winning report on ketamine coma treatment
http://www.rsdfoundation.o rg/Coma.htm

For CNN Report with Dr. Schwartzman on ketamine coma
http://www.sarahrutgers.co m/special.html

As of this point, my coma is scheduled for December.

 

My Story

Hi everybody! My name is Sarah Rutgers, and I have been suffering from reflex sympathetic dystrophy, otherwise known as RSD or CRPS since July of 2006. RSD is a chronic neurological disease that causes severe chronic pain. My symptoms began in July of 2006. Since then, it has become an uphill battle, which I still fight on a daily basis.  In a small percentage of RSD sufferers the condition can spread to involve the entire body.  My pain began in my right knee, and since then has progressed and spread to full body RSD. The McGill pain scale ranks RSD pain higher on the pain scale then any other painful condition, including cancer pain, childbirth and even amputation without medication. The nature of the pain is chronic, so it does not stop or go way, and the pain cycles are often like a roller coaster. My RSD also affects my entire autonomic nervous system and multiple systems in my body, causing a multitude of problems not just the pain. Dystonia, changes in skin, muscles, tendon, and bone, vascular dysfunction, chronic edema, insomnia, and difficulty initiating movement are among a few. My limbs are always swelling, changing color and temperature. The disease has hijacked my vascular system affecting my heart, circulation, and other internal organs. I have developed deformities of my limbs due to the dystonia, bone marrow edema and the many other complications. I have tried TENS unit, numerous spinal injections, physical therapy, various medications, and even numerous holistic and alternative approaches.  I have tried every other form of treatment for RSD.  Unfortunately, my body has not been responsive and the disease has continued to progress.  I take various medications and work really hard to keep my body functioning and make every day life bearable. Even though it may be extremely difficult at times, and sometimes impossible; with the strength God has given me, I try to stay as active in my life as I can.

I have a rare severe and advanced form of RSD, which has not responded to conventional treatments. Now, a drastic treatment is my last resort to get my life back, and that is to be put into a medically induced coma. I am under the care of Dr. Robert J. Schwartzman, Professor and Chairman of the Department of Neurology and Neuropathic Pain Research at Drexel University College of Medicine in Philadelphia, PA. Dr. Schwartzman is a nationally and internationally known pain management specialist, who has spent his entire career studying the disease and helping bring relief to people suffering from it. He has pioneered research, discoveries, and advancements that reveal how pain brings about physical changes in the spinal cord and the ways in which certain molecular cascades cause pain. His focuses on use of ketamine to block specific pain receptors associated with RSD has lead many of the most intractable RSD patients into full remission and recovery.  Dr. Schwartzman has referred me for the ketamine induced coma, which can only be done in Germany or Mexico.  While on the waiting list, I will be fundraising for this procedure. Meanwhile, I will be getting lower dose infusion treatments in Philadelphia, PA.

Having a physical disability has changed my life more than I could have ever imagined. The pain, swelling, dystonia, and other symptoms limit everything, from my ability to stand for more than a few minute, to my ability to sleep, concentrate, and relate to other people. The pain is so intense it can often leave me feeling frustrated, angry, helpless, and exhausted. I am learning more about my disease and how to cope and adapt as I go. I value every bit of your support, as well as your patience and understanding of my disease and how it impacts my life and who I am. Your prayers, friendship, and encouragement are vital in my life. God is my source of strength and my rock. Without the grace and mercy he has shown me, and the strength he has given me through my relationship with Christ, I would have failed miserably and given up on life like this. Romans 8:31-39 basically sums it up with these words, “If God is for us, who can be against us? He who did not spare his own son, but gave him up for us all-how will he not also, along with him, graciously give us all things? Who will bring any charge against those whom God has chosen? It is God who justifies. Who is he that condemns? Christ Jesus, who died-more than that, who was raised to life- is at the right hand of God and is also interceding for us. Who shall separate us from the love of Christ? Shall trouble or hardship or persecution of famine or nakedness or danger or sword? As it is written: “For your sake we face death all day long; we are considered as sheep to be slaughtered. No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” I hope to be a living testimony to his power, his faithfulness through difficult times, and his miraculous healing.

• I have Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy Syndrome (RSD).
• Physicians do not know precisely why it develops or what causes it, but CRPS is a nerve disorder that usually occurs after a traumatic injury, surgery, sprain, fracture, or a period of immobilization. The principal symptom is pain dramatically disproportionate to the injury.
• More than 140 years ago Dr. SilasWeir Mitchell, a Union Army surgeon, first described the excruciating pain that we know as CRPS.
• CRPS can lead to disability.
• I may look “healthy,” but I often suffer unbearable, unrelenting, and burning nerve pain. The McGill Pain Scale rates the pain of people with CRPS higher than that of people with cancer.
• My skin may swell, sweat, change colors, change temperature, or hurt to the slightest touch.
• CRPS can spread.
• Often it is difficult for me to sleep so I may have trouble with attention and concentration.
• I am frequently following a prescribed medication regimen that usually involves powerful drugs with many side effects that may affect my alertness or attentiveness.
• It is often hard to move easily or keep my body steady.
• Chronic pain, like that caused by CRPS, often leads to depression because we undergo significant, and often negative, life changes.
• I have good and bad days; even hours. Stress increases my pain.
• Presently, there is no “cure” for CRPS, although the ketamine coma is thus far the only treatment confirmed to have permanently put such severe case into remission. I always have hope because of the support of my church family, friends, ongoing research, a great medical team and Dr., and most of all my faith and trust in God.

Here Is How You Can Help Me

Although the ketamine coma is currently my only option, it is not approved for use in the United States by the FDA. Therefore, the cost of the treatment is not covered by insurance, and must be raise entirely through gifts, donations, and fundraising. Any financial contribution is greatly appreciated and desperately needed and will go directly to the cost of my medical treatment and the ketamine coma.

You can also help by donating your time and energy to the fundraising process and raising awareness about this disease and my unique circumstances.

Please believe that the pain is real even though it is invisible and may not be readily apparent in my demeanor or activities.

I am learning various coping mechanisms to get through the day, but the chronic pain is always there. I have good and bad days, even hours, and I cannot predict how I will feel each day.

Sometimes it hurts to be touched, so please ask before you touch me.

You can stay updated and informed about my progress and needs through my website, sarahrutgers.com

You can contact me through mail, phone, or e-mail for more information on how to help specifically.

Most importantly please always keep me in your prayers!