Legislation and Lymphedema Awareness

Lord, I thank you that you value the calling of motherhood. As I work to serve my family and build our house into a home, I pray for wisdom, endurance, energy, and joy. Help me to know that raising children is a significant and high honor. I don't have to be in an office to be significant. Thank you for the privilege of building strong and lasting values into my children.

The wise woman builds her house, but with her own hands the foolish one tears hers down. Proverbs 14:1 ~ Tara's Second to Final Facebook Post, February 14, 2013

Everybody has a cause. Every cause has a ribbon. March 6th is World Lymphedema Awareness Day. This year, I did not make a big deal about the designated day, because it has little to do with pregnancy, breastfeeding, and postpartum care, which is where my passion lies at the moment. However, for the past 10 years, I have been a certified lymphedema therapist, which easily led to my interest in oncology rehabilitation and wellness. From the single day lecture that we had in occupational therapy school, I knew that I would one day pursue this specialization. I loved this work and remain grateful for and connected to the Lymphedema and (breast) cancer communities. However, with March also being dedicated to women, nutrition, developmental disabilities, pregnancy after loss, and birth psychology awareness, all of which are relevant to Blossom, I decided to let someone else wave a flag for Lymphedema. 

March is also the month that one of my dearest friends transitioned to peace after a long battle with breast cancer. The last time I saw her healthy, she was weeks away from delivering her third child, a daughter this time. She had already beaten cancer... twice, and she was absolutely full of love and life. Shortly after her daughter was born, she was diagnosed for a third time. This time, everything was bigger, more aggressive, and more resistant. I can remember her telling me that with this bout, she had never gotten a good report from the doctor. Through it all, she continued to not only smile, but also encourage others- daily. As in, every single day on Facebook, she offered a scripture-based meditation, that rarely mentioned her cancer, and was always applicable to anyone's life. Even during my own challenging pregnancy, she encouraged me, insisted on being my daughter's godmother, and even (jokingly) offered me an anti-nausea pill while we were at an event where she was being honored, as somehow I felt sicker than she looked. That was the last time I saw her, ever. Three months later, while she was in the hospital getting pain and nutrition management, I was in the hospital laboring for 23 hours. She stayed up texting me nearly the entire time. She said nothing of her pain and fatigue, but offered constant help with mine. She made me smile. She transitioned two months later. My daughter's birth and her death are inextricably connected in my mind and in my heart. Thinking of her, especially this month, reminds me of all of the courageous cancer survivors whom I have known, loved, and treated. That's my justification for writing this piece... that, and the presidential election. 

The pain, isolation, chemotherapy, radiation, and surgery associated with cancer is enough for anyone to handle. Still, roughly 30% of women with breast cancer, have an additional, incurable complication called lymphedema. Lymph is a thin, clear fluid that circulates throughout the body to remove wastes, bacteria, and other substances from tissues. Edema is the buildup of excess flluid. Lymphedema occurs when too much lymph collects in any area of the body. People can be born with lymphedema, where it can show up in childhood, or later on, in adulthood.  Lymphedema can also present itself after some assault to the lymphatic system, usually after surgery or radiation. If lymphedema develops in people who’ve been treated for breast cancer, it usually occurs in the arm and hand, but sometimes it affects the breast, underarm, chest, trunk, and/or back. 

Lymphedema may be on a spectrum from barely noticeable to mildly annoying to debilitating. It may be very well controlled in common situations, but become more significant during more physically or emotionally stressful times. Lymphedema treatment includes a special kind of massage, compression bandaging, exercise, and skin care. The treatment is rigorous, time consuming, expensive, and has limited (and in some cases, no) insurance reimbursement. The maintenance is lifelong, requiring new compre$$ion garments, AT LEAST once a year. What does any of this have to do with the election? Plenty. For many years, there has been a push by the lymphedema community, including patients, family members, and therapy providers, to encourage insurance companies to provide comprehensive, lifetime coverage to lymphedema patients. 

Lymphedema Treatment Act

Whenever patients lamented about their insurance coverage being insufficient for their prescribed lymphedema therapy, I suggested that they contact their congressmen about the Lymphedema Treatment Act. A blank stare was the typical response. They were usually too distracted, too hopeless, too confused, or too ill to make any progress, but I always gave them the information, including a form letter, telephone speech, and contact information. I had written our congressmen on their behalf, each year, since 2006. Sometimes, my patients just did not believe that there was any connection between their condition and their congressmen. By 2010, the lobbyists were fairly close to getting the full support needed in the House of Representatives. However, following the mid-term congressional elections in that year, most of the support was lost. There was a ground zero type of re-grouping required, and we are still in the first phase of having the act sponsored, supported, and passed, even in The House, which is an early step. When I revealed this fact to patients who were otherwise thrilled about the election results, they were dumbfounded. They never considered this impact of their vote. As we move closer to the general election, we could find ourselves in a similar situation. There are 469 seats available in the 2016 November election- 34 Senate seats and all 435 House seats. 

SchoolHouse Rock... Remember?

In this ridiculous, hostile, and confusing political climate, the following questions need to be asked, about this and any other issue that concerns you. Are your representatives representing? Does this matter to you? What does? How do you decide who gets your vote? If not this one, what issues would move you to support, oppose, or abandon a candidate? Are you willing to speak to your congressmen about the issues that are important to you?  Find out here if your congressmen are attached to this bill, and learn what more you can do to help the process. 

Lymphedema ACTion Across The United States