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This fundraiser ended on 04/30/10

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My wife Carrie is in constant pain. Carrie was diagnosed at Mayo Clinic with CRPS/RSD (Chronic Regional Pain Syndrome/Reflex Sympathetic Dystrophy). We are fundraising to get money to take her to the RSD/CRPS Treatment Center in Tampa, Florida.

In November 2001 Carrie was kicked in the back by a little boy sitting behind her at a basketball game. This kick triggered intense pain in her right lower back. Over the years, we have seen roughly thirty to forty doctors in seven states and tried many procedures and medications to eliminate her pain. The pain has remained and never ceased in all these years – no treatment has helped. In fact, the pain has continually worsened. The pain has progressively moved all the way up her right back and down lower on her back and through her right hip. She also now suffers from pain in her wrists, elbows, and knees. Finally, Carrie has suffered from intense bladder pain over the last four years which I and some of the doctors believe could be related to her back pain. 

In 2009, we traveled four times to the Mayo Clinic in Rochester, Minnesota. Carrie was diagnosed with Reflex Sympathetic Dystrophy (RSD) also called Chronic Regional Pain Syndrome (CRPS). The Mayo Clinic treated us better than any other treatment facility has, but in the end all their treatments failed to help and they can now only recommend a pain rehabilitation program which will not stop Carrie’s pain – it will only help her to hopefully cope better with it.

RSD/CRPS is a disease of the central nervous system that was first discovered during the Civil War in soldiers wounded in battle and the disease mainly affects women. It is described as one of the most painful, debilitating diseases out there. The pain never stops and tends to increase and move throughout the body of the person affected. Many people eventually are so disabled from their pain that they lose the use of their arms and legs and are confined to a wheelchair. The pain is aching, burning, stabbing, and excruciating. People with RSD/CRPS suffer mentally as well with extreme depression and anguish. Many people with this disease commit suicide or become alcoholics or drug addicts. Likewise, the narcotics prescribed to try to take the edge off the pain are very toxic to the body and can cause addiction, stomach ulcers, and other additional medical problems.

Carrie for the last six years has not been able to work full-time and only recently started teaching a limited number of piano lessons to help us financially due to all the medical debt we have endured trying to fight this disease. Her pain is burning and stabbing and aching and never ceases. She has gone through many narcotics to try to help with the pain, changing to another one when they no longer work due to her body building up too great of a tolerance to them. One of the narcotics she took for many years is the most powerful narcotic doctors have and they use it to treat terminal cancer patients with their pain. She does not sleep or eat much at all due to the terrible pain. Furthermore, Carrie is limited to staying at home on our couch 95% of the time and cannot even attend Church services anymore. She has struggled greatly mentally and has gone through her own moments of wanting to give up just to have the pain end. One thing with Carrie is that she is a great actor and is amazing at hiding how much pain she is in when around other people. I witness her when it is just the two of us and it is heart-wrenching and painful to see a beautiful vibrant young woman struggle and deteriorate over these last eight years. We both have cried many tears together just trying to hold on for the day when she can feel better and will stop getting worse. Also, I worry greatly that she will one day lose the mental battle with this disease because mentally dealing with pain is such a tremendous struggle.

In researching RSD/CRPS, I have found the only RSD/CRPS treatment center in the United States. It is in Tampa, Florida and the main doctor, Dr. Kirkpatrick has been steadily treating patients with this disease with miraculous results from some new treatments. The treatments involve using a drug called Ketamine to infuse or “flood” the body in high doses to essentially reset the nervous system so that it will stop telling the brain that there should be pain due to an injury when in reality there is no injury. This is the glitch this disease causes in the nervous system. The treatment does not cure this disease – it only puts the disease in remission. Any future trauma or injury or even stress can retrigger the painful symptoms of the disease. However, just to get Carrie pain free or almost pain free would be an incredible blessing! The treatment initially involves giving four-hour doses of Ketamine for three days straight. On average, if the treatment works, three or four follow up treatments are needed every three to six months to fully put the disease in remission.

The RSD/CRPS treatment center in Tampa does not work directly with medical insurance and requires 80% of costs up front when you visit. As such, we will need around $10,000 for the first (and if needed), another $10,000 for the second follow up trip. We can submit the costs to our medical insurance, but we have a high deductible, high maximum out of pocket plan that still would require us to pay at least $9,600 out of pocket. After the second trip, hopefully, we can be reimbursed by the insurance to have money to pay for a third follow up trip if needed.

We currently have around $12,000 in medical debt, including our Mayo Clinic trips and are asking if you would please help us acquire the money needed to help Carrie.   We have saved and aquired already through fundraising $3,500 of the $10,000 we need for the first treatment.  I am searching for a part-time job in addition to my full-time one to help save money and we will be putting as much money into savings for these trips as we possibly can.

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