Now are you ready for this?? She never had an initial injury to spawn her RSD!! She went to her 6th grade classroom one sunny, Pennsylvania morning in April 1989 as if all was right with the world. Her knee was a little sore, but this urchin was a baseball playing tomboy, therefore oblivious to “little pains”. By the time she had gone home for lunch that day, her knee had grown to 3 times it’s normal size. Kristen went back to school having been told by her mother to, basically, shake it off. Three days later, as they were in the car on their way to the Emergency Room, they rethought that assessment.
It wasn’t until June of 1990 that she got her RSD diagnosis. (Yes, those were the days when it was still diagnosed as RSD and not CRPS.) She saw an orthopedic surgeon who ran all of the excruciatingly painful process-of-elimination tests, MRI’s, CAT Scans, x-rays, and thermal scans before her diagnosis came … courtesy of a new-to-her doc at Children’s Hospital of Philadelphia (CHOP). He reviewed all of her test results and <BOOM> ten minutes later he said those three mind-blowing letters … “RSD“.
To hell with baseball at this point, this 13 year old kid had been on crutches for the last 13 months and was wondering if she’d ever be able to walk again!! She, for obvious reasons, was confused. How had this happened? She was in the prime of her kid-dom, what was going to happen to her now?
Within 72 hours, she was admitted into Children’s Seahorse House for a 5 week series of nerve blocks, intense physical therapy sessions and behavioral therapy sessions as well. Her docs found the nerve blocks to be beneficial to pain relief and very helpful when increasing her PT to 6-9 hours per day. Over the course of the next three years, Kristen spent a total of 12 months at CSH undergoing 40-50 nerve blocks. The doctor was reluctant to give her any pain killers and told her that she‘d have to learn to live with it. (I’m thinkin’ that her age was a huge factor in that decision.)
After all of this suffering and hard work, she had finally been diagnosed as 98% pain free. The word they used was “remission” ... but they said it would probably not last forever.
At 16, Kristen lost her mother. Shortly after this devastating and tragic event, she met her, now, husband, Raheem. Two years later they gave birth to a baby girl and year after that, their litter grew to four with the birth of their 2nd daughter. Still she was in “remission“. I asked her how she explained RSD to her husband. She told me that she didn’t. She was of the mind that if she just forgot about it, it might never come back. She returned to school, landed an ah-mazing job and 6 months into her newfound career, she was awakened in the middle of the night by a blinding cramp. Remission was officially over. It was time to tell the hubbs!!
“He did not understand,” she said. “Despite my docs even telling him, he took it personally when I didn’t want to be touched. It’s been extremely hard.”
At 27, Kristen gave birth to a bouncing baby boy. This time the pregnancy affected her pain and vice versa. She was informed about what affects her medications could potentially have on the baby so she weaned off of all meds for the last 6 weeks of being a human incubator. When the little man was finally ready to make his debut, Kristen was given an epidural. Aaahhhhhhh … It had kept her pain manageable through childbirth and she was able to care for him right away.
She says that raising children and having RSD has been tough. The kids know that Mom needs extra time these days; extra reminders of dates, events and projects that are due. They need to help out a lot more around the house, but they also know that Mom will be there for them always. Case in point: 1 daughter is a Jr ROTC and 1 daughter is active in dance. Kristin doesn’t miss an event. She says, “They are truly supportive even as teens. They try not to give me too much trouble.” She also recently started home-schooling 1 daughter and their son … and they are already seeing a huge grade-spurt! (Kudos to the Mom!)
Kristen has carried with her everything she ever learned at CSH, which she now calls “RSD Bootcamp”. It was absolutely one of the hardest things that she has ever had to endure, but she has learned how to fight and live her life as best as she can despite the pain. My fave quote of hers is “Keeping moving keeps me moving.” I love that! She uses in-home physical therapies daily and comes up with some kick-ass nail designs to distract herself from the pain.
Her final pearl of wisdom for you is this, “After more than 20 years, I’ve learned that it’s not about what I can’t do, like when I was young. It’s about what I can do now.” She a genius!! A friggin genius!! (I’m gonna hafta try that one!!)
Do you have any RSD questions for Kristen … or myself? Leave a message in the comments below, or email them to me at havefaith_91@hotmail.com.
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