2019 has been a whirlwind. I’ve had a lot of firsts. I traveled a little, started some personal projects, launched keepitmovindc.org, my non-profit organization, met some wonderful people, and ventured onto social media for the first time ever!
Life with Lymphedema
Having Lymphedema has limited me in many ways. It’s affected my life in both positive and negative ways. For a person who’s normally guarded, it’s forced me to talk about my health, be more open and vulnerable.
Having Lymphedema has altered the way I dress. Small things that are normal to most women are a task for me: like getting pedicures. Ignoring my Lymphedema was easy. I didn’t discuss it with anyone outside of my family and close friends. However, several bouts of cellulitis over the years and spending days in the hospital pushed me to focus on self- acceptance, self-care, and eventually advocacy.
Stepping out of my Shell
Lymphedema has been a gift; it has taught me to be more understanding. It has taught me to look beneath the surface and see the true beauty in people. I’ve never been a judgmental person, but I can say that I wasn’t as empathetic as I am now. I lived in my own bubble, in my own world. It has definitely opened my eyes to realize that you never know what a person is going through.
This year, I’ve learned a lot about myself. I have connected with so many new people from all over the world, and thanks to social media, I have also connected with people who are living with lymphedema.
Conferences
I met some wonderful women at my first blogger’s conference.
In October, I attended the National Lymphedema Network In Boston, Massachusetts. The days were long, so I found myself leaving the sessions so that I could elevate my legs. Overall, the conference was very good and provided a wealth of information.
I witnessed some extraordinary people get honored for their amazing work at the Rare Disease Awards in Washington, D.C.
The 9th International Framework Lymphedema Conference in Chicago, Illinois was an amazing experience. It was my first time in Chicago and I was able to take a tour of the north and south side of the city. I visited the homes of President Barack Obama and Mrs. Obama, Muhammad Ali, and the Honorable Minister Louis Farrakhan. My husband and I saw the first Playboy Mansion in Chicago, ate at the first Uno Pizzeria, and the first International House of Pancakes.
The most surprising thing to me was the weather in Chicago. I assumed that because it was June it would be hot, but to my surprise, I had to purchase gloves and a hat. Even the heat was on in the hotel.
During a delicious dinner at Carson’s Ribs and Barbeque with my husband, we met a beautiful couple celebrating their 50th wedding anniversary. We talked to them for over an hour. When they started to leave, the wife grabbed my hand and gave me $40 for dessert and words of wisdom I will never forget.
Advocacy Training Committee
In August, I was nominated to the Advocacy Training Committee for the Lymphedema Treatment Act and it has been a great experience. I’m learning about the inner workings of operating an advocacy organization.
Special Thanks
A special thank you to:
Heather Ferguson who has done tireless and selfless work in getting the Lymphedema Treatment Act to the floor for the bill to be voted on in Congress.
Becky Sharp and Deborah Crow who have been extremely helpful to me as I continue on my advocacy journey.
Bill McCann and Cindy Cronick who have assisted me virtually over and over, even when I call with the same questions. Thanks for not being irritated with me.
Reflection and Looking Forward
Overall, 2019 has been a productive year for me. I started Keep it Movin’ DC, my non-profit organization, to assist people affected by Lymphedema get wrapping supplies in Washington, D.C. Although I’ve had a couple of personal projects going on, I’ve tried my best to stay engaged and consistent on social media, but I can do much better. I traveled to a few new places, and met new lymphie and non-lymphie people.
As I head into 2020, I hope to become a better version of me. I’ve learned to be present. I’m learning to stay connected. I’m grateful for this platform. I’m thankful for my health. I’m thankful for my family. I’m thankful for my friends. I’m thankful for my failures, mistakes, and thankful for growth. Looking forward, I’m hoping to continue to have peace, love, and gratitude. I’m wishing everyone well on their journey and here’s to a great 2020.
