By Ed Coghlan.
Katie O’Leary is a former college athlete who has CRPS–a condition which has changed her life. In part one of her interview with the National Pain Report, the Los Angeles woman recounted how a surgery started this journey. Today, she talks about successes and setbacks in how she deals with CRPS.
What have you done to help fight your CRPS? What are your successes?
“From January 2016 up until June 2017 I was receiving Ketamine infusions. Ketamine is a tranquilizer used in veterinary medicine and it is also a sedative used in pediatric surgery. Ketamine is not FDA approved for the use of treatment for CRPS, which is why United Healthcare denied my claims when 2017 beckoned with a slithering hand of bad luck and setbacks. Of course, they approved all of my treatments in 2016, but suddenly they were just “not safe.” Luckily, I had applied for financial aid through USC Keck hospital and was approved from Dec. 2016-June 2017. This meant that they would pay for all of my bills for the next 6 months. Starting in April 2017, my pain management team ran by Dr. Steven Richeimer decided to increase my dosage of ketamine from 200 mg over a 4 hour period to 400 mg over a 4 hour period. That helped tremendously with the inflammation and the pain – and with allodynia (hypersensitivity to touch).
Other treatments and exercises that have helped me are therapy band workouts, yoga (from youtube), and especially swimming. Swimming in the Pacific ocean is the most therapeutic exercise for me. As a child, my family would visit the Jersey shore for a week. Some of my happiest memories were on the beach as a child – and that hasn’t changed as an adult. There is something so peaceful about standing on the shore, breathing in the salty air and taking in the endless blue waves. When I step into the water, it is the only time I feel almost normal. The cold water makes my inflamed leg feel so much better, and the salt adds more buoyancy when I swim and float, making this the best workout for my body.”
What has happened that caused setbacks?
“United healthcare denying coverage for ketamine infusions, Experiencing the death of a dear friend and the death of a family member, atrophy of muscle in my right leg due to pain or lack of mobility. I was hospitalized the second week of August 2017 because the emotional and physical hell I went through to be there for my best friend’s mother’s funeral (insert article link?). For every step forward I take, I feel as if I move two steps backward. It is a constant uphill battle to keep my leg muscle calm and prevent atrophy. Furthermore, flare ups have been harder and harder to deal with since I cannot get ketamine through my insurance. The ketamine helps desensitize my leg, and without it – the nerve sensitivity increases.”
You are a competitor by nature…What advice do you have for people who encounter those setbacks?
“My best advice for people who encounter CRPS/RSD or any debilitating disorder is to empower yourself with knowledge. The more you know about your disease or disorder, the less afraid you will become and the more in control you will feel. Read as many books, articles, studies, and papers published wherever and as often as you can. Knowledge is power – and that power gives us the ability to compartmentalize our fears and work towards making ourselves better.
In addition, do not be afraid to ask for help. Pushing yourself to the limit because you are too “proud” to ask your friends, family, or co-workers for assistance is silly, because you will only make yourself worse.
Finally, KNOW YOUR INSURANCE COVERAGE. Understand what your deductible is and what it means. Figure out what your “in pocket maximum” means and what that number is. Find out which hospitals, specialists, and therapists, and doctors are covered by your insurance. Always challenge a claim by your insurance company if you think there has been a billing error (this happens all the time). Never take a bill or an explanation of benefits at face value. Fight and appeal decisions from your insurance company – they do not always do what is best for you!”
Thanks to Katie O’Leary for sharing her continuing story with the National Pain Report. We are looking for similar patient stories which we will feature in September during Pain Awareness Month. If you have an idea, submit it to firstname.lastname@example.org