Kathryn’s pain began spiking again 4 weeks post treatment and it has continued to increase. At this time she’s averaging an 8 on a 1-10 pain scale. However, we still see positive results from the week in the hospital on Ketamine such as pain has not spread to full body again and meds still have the ability to bring pain down to a 6. These are results that day treatments (boosters) alone cannot give. This may not seem like enough but we are very thankful for any relief!
Medication changes and their nasty side-affects have been tough during the last month and in combination with increased pain, Kathryn has been struggling through partial days of school and missing school frequently. She’s doing most of her school work in bed.
Kathryn’s family is heartsore and, as always, is looking for alternative treatment options to make the torture stop and to give Kathryn a life!
Today Kathryn and mom are in NC for a Ketamine booster. Kathryn is half-way through the treatment at this moment and is doing well; we keep getting better at this thing 🙂
I’ve been meaning to share Kathryn’s college essay with all our friends who visit this site. I believe it reveals an amazing attitude which is, at least in part, the fruit of your faithful love and prayers and God’s great mercy. So here it is….
KATHRYN’S COLLEGE ESSAY
As a young child I whirled, jumped, and pirouetted. At the age of ten my dancing stopped. I was given a “life sentence” with the name Complex Regional Pain Syndrome. CRPS is a pain syndrome in which the victim suffers constant, excruciating neuropathic pain. It is a progressive affliction of the Sympathetic Nervous System that leaves physicians, specialists, and researchers scratching their heads. Some patients find a treatment that brings them to remission; others never again experience a painless day. I am one of the unlucky few who fall into the latter category.
As a young child, I loved playing basketball, volleyball and ballet. CRPS abruptly slammed the door on those activities. Classical guitar, a passion that began when I was seven, became my primary pastime and outlet. Although I never stopped playing, CRPS limited my performance opportunities. I was invited to attend the All State Virginia Guitar Ensemble for two years in a row. Unfortunately, days before I left for the second event, I had to back out due to CRPS pain. I spent months preparing for this event, and was frankly heartbroken to miss it. I devoted hundreds of hours to practice and looked forward to rehearsing and performing with Virginia’s finest guitar students. While I didn’t get to enjoy the experience, I am not sorry for the time I spent with my instrument. While I don’t have the luxury of more typical expectations, I have the gift of music. It has been my salvation.
Although the initial diagnosis was grim and borderline hopeless, I decided that my chronic disease would not be wholly negative. I became determined to use my chronic pain as a blessing for the community of chronic pain sufferers. I have been pained by my nervous system and the awareness of the pain and suffering CRPS has caused my parents, brother, and close friends. This baffling condition and the impact on those I love have contributed to my transformation from carefree young child to a determined and self-reliant individual who will have a positive impact on others.
With the help of physicians, family, and educators, I continue to explore methods of improving my daily function and overall health, and have come to appreciate collaboration, research, medical technology, and patience. I recognize that my condition required me to depend on my closest friends and family; it has also catapulted me into adulthood.
Due to my frequent inability to physically attend classes, I embraced long distance learning with my instructors. This method of learning required me to exercise discipline and assume full responsibility for my learning. It also taught me to value the opportunity to learn. I have made the most of my educational opportunities and excelled in academics while battling chronic pain. I learned to use alternative educational resources and to push myself beyond normal limits to succeed. I discovered that my education is not limited to the classroom. Every experience is a learning opportunity.
At ten years old, I began considering a career in medicine to help treat people who also suffer from chronic pain. My interactions with healthcare professionals after diagnosis led me to believe that western medicine needs researchers and problem solvers. The world can benefit from a person who knows the power of the scientific method, and who has applied the scientific method to her own life. I hope to challenge the scientific community to ask itself new questions.
While seemingly impossible, joy and purpose amidst indescribable pain is feasible. My life has been, and will continue to be, joyously focused on the hope that science and medicine will soon have more to offer those who suffer from daunting disorders like Complex Regional Pain Syndrome, Fibromyalgia, Arthritis, Lupus, and many others. Although I may not be physically well enough to twirl and leap, my ultimate goal is to ensure that no one else will ever have to stop dancing.
TWO SHORT ANSWER QUESTIONS
Question: As you start your college career, what is your primary goal as a student and how have you prepared to meet this goal, how do you plan to succeed, how do you feel you will do at VCU?
Answer: I plan to pursue a degree in science in order to conduct medical research. Throughout my schooling I have had a special interest in math and science. My interest in medical science reached its full potential when I was diagnosed with Chronic Regional Pain Syndrome. I have been to doctors all over the east coast, exhausting all options to achieve pain control. My experience with CRPS has inspired me to want to study pain syndromes and contribute to their eradication. I hope to contribute to the scientific and medical communities and patients in the future.
My high school career was marked by frequent absences from school, requiring distance and self-directed learning. While my condition required me to deviate from the Honors track I had been on, my academic commitment and energy never faltered. I am driven to succeed and have demonstrated the ability to do so. A modified schedule may be necessary but need not detract from my pursuit of a rigorous program of study. I am confident that the discipline and perseverance I cultivated to cope with CRPS will serve me well at VCU. To VCU I will bring strong communication skills, cultivated in my efforts to advocate for my health care needs, and commitment to excellence.
Question: Describe a challenging situation you’ve faced. Briefly state the situation, how you responded and why, would you have done anything differently, has it affected or shaped who you are today?
Answer: My personal essay provides details of my experience with Chronic Regional Pain syndrome and chronic illness. Although my journey has been marked by pain and struggle, there have also been triumphs. One of the most difficult experiences I had was the discovery (during a meeting with a pain management specialist) that the opiate medications I had been prescribed for years were in fact making my condition worse. In that doctor visit, I discovered that accepted medical practice was flawed. Then, I went through the very strange and difficult experience of controlled detox in order to transition to alternative pain management. I felt I had no choice but to endure excruciating withdrawal to improve my health. This was one of the most taxing experiences I have had. I triumphed over physical dependence and grew determined to contribute to a better understanding of pain and its treatments. There are numerous ways in with my experience with CRPS has shaped my adolescence, sense of self and relationships. While I would not wish CRPS on anyone, I can honestly say I am grateful for the strength, courage and determination I have discovered in myself as a result of its presence in my life.
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