Managing my lymphedema Dedicated daily compliance
By Doreen Henriksen (as introduced and
transcribed by her daughter, Lynda
Henriksen)
Despite being outside her comfort zone, Doreen was encouraged to share her experience by her certified lymphedema therapist. She was also inspired by fellow lymphedema patient stories. Doreen’s motivation is simple yet profound: she believes people with lymphedema should be seen, heard, and understood. By opening up about her personal journey with this chronic condition, she aims to raise awareness and increase understanding of the challenges faced by those affected by lymphedema. Doreen is grateful to the Pathways Editorial Board for this opportunity. It is our hope that Doreen’s story will resonate with you and your loved ones, fostering empathy and support for the lymphedema community… Lynda Henriksen
How I became “Mrs. Compliant”
My lymphedema journey started in 1965. It was an eventful year when I married the love of my life and we started a family. During my pregnancy, I was diagnosed with toxemia and best rest was ordered. The swelling in my ankles didn’t subside post-delivery. As the years marched on, the swelling progressed into both of my legs. It took 49 years for me to receive an official lymphedema diagnosis!
In 2014, internal medicine specialist, Dr. Rajender Hanmiah confirmed primary lymphedema. He recommended three crucial management steps: moisturizer with the appropriate pH, certified lymphatic drainage massages, and compression stockings. Having already implemented these strategies because I had pretty much figured out for myself that I had lymphedema, I remember replying back to him “check, check and check”! It felt validating to finally have a
diagnosis, but also frustrating to know that I had been right for so long and yet went through decades of feeling like no one was listening, or understood the pain, discomfort and frustration when the swelling prevented me from wearing my shoes or being able to do the things I loved, like dancing with my husband. Worst of all was the feeling that it was somehow my fault. I’m sure many can relate to hearing from doctors and friends alike, “You may have had a lot of salt recently or you need to reduce your sodium intake.”
My daily management routine
Today, managing lymphedema is like a full-time job, requiring daily moisturizing, compression stockings, and lymphatic massages. My routine begins with leg and ankle exercises
and includes 30 minutes on my circulation machine before donning custom compression stockings. Due to scoliosis surgery, fusions in my back limit my ability to bend down. The tall butler and rubber gloves that I use are very helpful donning tools. I also appreciate my husband’s kind support, especially at night when it’s time to remove my custom day stockings, do 30 minutes on my circulation machine and then don my night stockings. I’m so dedicated to this daily routine that my husband jokingly started calling me Mrs. Compliant.
Doreen Henriksen, a devoted wife, loving Nana, and soon-to-be great-grandmother, lives in Brant County, Ontario. Married to her gold-hearted (and Kenny Rogers look alike!) husband, Wayne, for 60 years, Doreen recently celebrated her 78th birthday.
Recognizing the importance of the other things I do to manage lymphedema also helps me to live my life to my fullest capacity each day. I’ve enjoyed learning Tai Chi with a friend and making use of the private pool in our retirement community for swimming and water exercises. My walking poles are put to good use in warmer weather, helping me with balance and endurance, even if it’s for a short distance. In the summer I enjoy gardening and flower tending.
I also stay hydrated, eat nutritiously, rest my legs, and engage in creative activities like crocheting and reading. Managing lymphedema has become my mission, and I hope that sharing my story will raise awareness and understanding.
Embracing compliance has allowed me to maintain my mobility and quality of life, enabling me to enjoy simple but meaningful pleasures like driving and spending time
with my grandchildren, running errands, and supporting friends and my community.
Over the years, I’ve been fortunate to travel extensively, creating cherished memories with my husband. We have been across Cuba, Arizona, California, and Alaska. We experienced an RV adventure last summer through Nova Scotia and Newfoundland to visit family and spend weeks exploring with my daughter and son-in-law. It was the trip of a lifetime.
Advocating for better care
My care team, including my experienced lymphedema therapist Pamela Renneberg Monarch, my certified garment fitter, family doctor, and loving family and friends, have been invaluable in my lymphedema journey. However, retirement funds are limited for treatments, and the Ontario Assisted Device Program only partially covers the cost of my compression stockings. As someone living with lymphedema, I firmly believe that everyone facing this chronic condition deserves access to optimal care. Together, we must urge our government to provide more comprehensive
support, including coverage for lymphedema treatments, assistive devices, resources, and better healthcare professional training. I urge you to join me in advocating for the millions of individuals affected by lymphedema. Together, we can create a future where everyone has access to the care and support they need to live their lives to the fullest. LP
