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Nancy Orvis: My Journeys with Lymphedema

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by Nancy Orvis

When the Challenger blew up in space 25 years ago, I was recuperating from exploratory surgery in my left groin.  The lymph nodes had nodules on them and were removed which caused lymphedema in my left leg.  Thankfully I didn't have the suspected cancer.  I have been blessed to be able to stay active over the years.

 I retired as an elementary teacher 6 years ago, but during my years as a teacher I was able to talk about and educate my students and their parents about lymphedema.  When my second graders would ask why I was wearing a compression stocking and why one leg was so much bigger, I would explain simply about the lymph system and how mine didn't work normally in my left leg.  Often when I was reading to the class and they were sitting around my feet on the floor, I would feel little fingers rub my compression stocking, then my toes, and finally my normal leg.  Because I wear the compression stocking all the time, I found that little fingers like to feel the difference between skin and the stocking.  Our two grandsons would do the same when we played games sitting on the floor.  Once children have an answer they are satisfied with they are very accepting.

 I have been able to travel with my husband, Don, and take short-term trips to countries outside the US.  In the picture, I was in the Middle East in April 2010.  I am looking forward to going again this April. Long airplane travel is one of the hardest things for me to do with lymphedema, but I sure enjoy the country and the people once I am there. I know a lot of patients with lymphedema are afraid to fly because they are worried about the possibility of the swelling getting worse, but I have found that these practices help me. While on long flights I always wear my compression stocking, avoid soda and salt and try to drink water often. To help my circulation, I walk or stand up periodically. I also put soft cotton batting under my stocking on that bone bump on the top of my foot if the vein starts hurting. Once I land, I try to elevate my leg and do some of the exercises that Saskia gave me many years ago.  Since my travels usually require a lot of walking, I spend the most time trying to get comfortable with the shoes I wear.  Leather Tevas and my Nikes usually work best. I have men's Nikes since they give me a little more space to expand if needed.   

Saskia was a big help to me 18 years ago when my husband and I spent a week at the Lymphedema Clinic in San Francisco. We have three married children and two grandsons and I love spending time with them.  My husband has been my biggest supporter in living with lymphedema.