I would like to thank all those that have helped me in my struggle with Reflex Sympathetic Dystrophy (RSD). I have had a lot of support from family and friends and I am eternally grateful for their help. I would also like to thank Dr Schwartzman for his amazing work and for the Ketamine infusions that I had last year and Dr Stephan Neff and the other New Zealand Doctors. I would like to thank Dr Kirkpatrick and Dr Cantu for considering me for this Ketamine Coma Study. The research being done gives a lot of hope for people suffering from this debilitating disease.
I don’t remember what it’s like to be without pain; it has become a part of my life. I know before I developed RSD I was very active. I was extremely competitive and played lots of sport including ice skating, swimming and ballet. My favourite sport was netball and I had dreams of becoming a Silver Fern (National NZ Team). However, I developed RSD and at the age of 10 I was forced to give up all the sports I had previously loved so dearly.
As the years living with RSD progressed, the disease itself progressed. It travelled up my leg and now I feel pain everywhere in my body. My hands became so painful and weak that I was forced to stop playing all my beloved musical instruments that had been my focus for so many years.
My goal for the last few years has been to complete my high school years. Although at times it was a struggle and I didn’t attend many of my classes, I completed my last year at high school and gained university entrance. I am currently unable to attend university but hopefully I will be able to attend in the near future.
No words can describe the intensity of the pain. It is the worst pain imaginable. It feels like my whole body is on fire, a fire which refuses to go out. The intense pain has altered my life completely; I can’t perform simple day-to-day tasks because of the pain my body is under.
Taking a shower feels like hot, burning knives are being plunged into my flesh. Such immense pain means that my body is continuously under stress. The pain restricts me from sleeping properly and as I use almost all of my energy to fight the pain, I have little energy for anything else. Such high levels of pain means I also suffer from daily headaches, nausea and often migraines.
At times I completely black-out as my body can no longer cope with the high level of pain. My life has become focused around pain and restrictions; a good day is a day that I am able to cope with the pain, a bad day is when all I can see is the pain, and I feel as though I have no control over my body.
Over the last eight years of living with RSD, I have tried many unsuccessful treatments and last year (March 2009) I travelled to Philadelphia to see Dr Schwartzman where I underwent 2 weeks of daily ketamine infusions (as an outpatient). Initially I responded well, but over the coming weeks I returned to my pre-treatment state and later continued to decline.
After lots of consideration, I have decided that I want to participate in the RSD Ketamine coma study in Mexico that was recommended to me by Dr Schwartzman last year. Although it seems extreme to deliberately put your body into an induced coma, I feel that it is something that I have to try as my condition is declining rapidly. I feel excited about the possibility of being able to live a normal life. I also think that no matter what my results with the coma are, my involvement in the study will help other sufferers in the future and I want to do all I can for others that live with this intense pain.
To ensure that my results from the Ketamine Coma help others with RSD I am committed to returning for Dr Kirkpatrick's required evaluation of my status at 1 month, 6 months, 12 months and 24 months after the Coma.
RSD has taken almost everything away from me; but it cannot take away my love for my family and friends, and my will to survive despite the pain.
Hamilton, New Zealand
August 16, 2010
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